"September"
my journey with esophageal cancer

by: Mark Roger Nelson
June 11, 1964 - October 31, 2007

Part 1, 2005 | Part 2, 2006 | Part 3, 2007

(New Years Day, 07)

2007 is here!
I am very concerned what could happen to me in 2007.
My last appointment for the 2006 was exactly my 100th cancer-related medical appointment.

Beneficial information (I hope)
I'm not doctor and still don't play one on TV but this is what I found while doing some research. These are foods that may help reduce the risk of getting cancer.

Good choices:
Alcohol (red wine)
Avocado (raw)
Beans (kidney, navy, northern, soybeans)
Bran (oats, rice, wheat)
Fish (bass, cod, halibut, tuna)
Fats - Polyunsaturated (corn, safflower, sesame, and soybean oils)
Fats - Unsaturated (olive, canola, and peanut oils)
Fruit (apples, blackberries, blueberries, cantaloupe, cranberries, grapefruit-pink, kiwi, melon, oranges, peaches, plums, prunes, raspberries, strawberries, tangerines, watermelon)
Fruit juice (100%)
Fruit – Dried (apricots)
Garlic
Grapes (red)
Mushrooms (maitake, shiitake)
Nuts (almonds, pecans, walnuts)
Oil or vinegar dressing
Poultry
Rice (brown)
Sesame seeds
Broccoli
Tea (decaffeinated green)
Tomatoes (and tomato products)
Vegetables (broccoli, broccoli sprouts, cabbage, carrots, cauliflower, celery, lettuce, onions, red bell peppers, spinach, squash, sweet potatoes, watercress, yams)
Whole grains (breads, cereals, pasta, rice)
Yogurt

Good snack choices:
Low-fat cheese and crackers
Popcorn (plain)
Pretzels
Raisins

Limit these food items:
• Fried items (fries, chips, vegetables)
• Meats and fish (smoked, cured, and pickled – flavored with liquid smoke is OK)
• Peanuts
• Pickled foods (or salt-cured foods, sweet pickles)
• Red meats (beef, pork, and lamb). Don't fry, broil, or grill at high temps. Lean cuts include 'loin' or 'round' such as tenderloin and top round. Baking or broiling without charring is better than frying or charbroiling
• Refined carbohydrates (pastries, sweetened cereals, soda, sugars)
• Saturated fats (butter, egg yolks, chocolate, dairy products palm and coconut oil, meats and poultry with skin)

Questions, questions, and more questions
Below is a list of questions that cancer patients can ask their doctors. Please don't rely on my questions alone. Read books, jump on the internet, ask other patients, and go to support-groups. Immediately write down questions that pop into your thoughts as you go about your day. Don't expect to remember them when you go in for your appointments. The news and information you receive during appointments can be overwhelming at times and you may forget to ask important questions. And write down the answers during the appointment. A good doctor will encourage your questions, not be annoyed by them.

Questions for your general doctor and/or oncologist:

• How do I request a fertility, vision, hearing, (or any other medical test) due to the risk of possible physical damage resulting from my cancer treatments and surgeries?
• Should I exercise during chemo/radiation treatment? How long should I wait after surgery?
• How will I know if I'm going through depression? What are my treatment options for depression?
• What is physically happening to my body when I get abdominal pains, chest pains, etc?
• Are there any non-traditional treatments (i.e. herbs, acupuncture, etc) that might help me?

Questions for oncologist:

• Is there anything that may increase the chance of the cancer spreading? (i.e. exercising, diet, alcohol, smoke-filled rooms)
• I have a vacation planned. How can we time the treatments to reduce the risk of side-effects while on vacation? Should I get vaccinations (i.e. Flu, Hepatitis A&B & Typhoid) or shots to boost my red or white blood cell counts before the trip?
• Which vitamins should I be taking? Not taking?
• Should I stop taking my (non-cancer-related) medications?
• Where is the cancer? Are lymph nodes involved? How large are the tumors? Is surgery an option?
• Which stage cancer do I have?
• What is the most aggressive treatment I can pursue? Likely side-effects?
• What is the least aggressive treatment I can pursue? Likely side-effects?
• Is stereotactic radiation, CyberKnife® Robotic Radiosurgery, Aloxi injection, Photofrin, photodynamic therapy (or other treatment options found on the internet or suggested by friends and family) an option for me?
• Should I be checked for diabetes if a blood test result shows a high sugar count?
• Why does this form of cancer have such a high reoccurrence?
• Does my cancer have any 'tumor markers', such as CA-125 with ovarian cancer, that I can be monitoring?
• Should I get a chest portacath for chemo treatment? What are the risks and benefits of a portacath?
• How often do I need to have Heparin injected into my chest portacath?
• Should I be doing any maintenance (i.e. cleaning) of my portacath?
• Do I need a medical card stating I have a portacath to get through airport security x-rays?
• Should I quit flossing my teeth during chemo to reduce the chance of gum bleeding?
• Is there a database that I can access to search for patients of my age, cancer, stage, and treatment to get survival rates?
• What studies did you use to arrive to my surgery, chemo, and radiation treatment plans?
• What are the failure/success rates of this treatment plan that you have personally experienced through your own medical practice?
• Will CT or Pet Scans be used to monitor my cancer? How was this choice decided?
• Who else is checking my blood work, X-rays, and CT/PET scans for cancer?
• How often will I be getting future CT/PET scans?
• Will non-diagnosed cancers be looked for on future CT/PET scans?
• Does anybody else help you come up with my specific treatment plan?
• Should I avoid eating foods with live bacteria (i.e. yogurt, salads, uncooked vegetables) during chemo?
• Should I avoid oily, spicy, highly-acidic food/beverages (i.e. OJ and grapefruit juice) the night before and day of chemo?
• Should I avoid swimming in public pools during chemo?
• What numbers from blood tests should I be monitoring?
• Would taking additional chemo benefit me even if no cancer is evident from recent CT/PET scans? Would this reduce the chance of reoccurrence?
• Will my dentist be able to perform cleanings, X-rays, and procedures during my chemo and radiation treatments?
• Am I now more susceptible to getting other cancers?
• Are my siblings/children at higher risk of getting this cancer?
• Am I at higher risks for blood clots?
• How long does it take the body to rid the actual chemo?
• Should I consider low-dose chemo after surgery in case there is residual cancer?
• Should I avoid tanning booths?
• Can I still donate organs?
• Am I more likely to get a skin burn from sun exposure during/after chemo or radiation?
• How was my chemo/radiation schedule determined? (i.e. type of chemo, radiation, and number of days)
• Should I be concerned over changes in my bowel movements or changes in color to my stools?
• How often does remission occur more than once with my form of cancer?
• Is it OK to drink alcohol during or after chemo?
• Are vaccinations less effective if taken during chemo treatments?
• Am I at higher risk of getting Shingles?
• Should I get a Neulasta shot after all of my chemo treatments, including oral chemo?
• How long might I live if I do not continue treatment? When would I start to feel sick or have pain?
• How long might I live if continue or start a new treatment?
• What should I expect for quality of life during my last days/weeks of my life? What part of my body is most likely to be impacted? How will my pain be managed?

Questions for the radiologist:

• How much radiation will I receive during my radiation treatments?
• How much radiation can my body be exposed to during my lifetime?
• What studies did you use to plan my radiation treatment?

Questions for surgeon:

• Should I consider low-dose chemo after surgery in case there is residual cancer?
• Are the post-surgery pains that I am experiencing to be expected?
• When would my body be able to handle another round of chemo or radiation?
• How long should I wait to exercise after surgery?
• How often do you perform this procedure?
• What are my surgery options?
• What studies did you use to plan my course of surgery?
• How long should I take Flomax to control urinary problems?
• What is the unusual "percolating" noise I hear/feel when I deep breath in?
• I experience muscle twitching, particularly while lying down, since taking Oxycontin. Should I be concerned of this known side-effect.
• Is it true that Ibuprofin helps with pain when cancer has gone into bone?
• How much fluid was drained during Pleuradesis procedure at hospital?
• How much is too much Oxycontin (pain meds) per day?
• How much is too much Ativan to take at night?
Questions during Hospice care:
• Will my insurance pay for Hospice nurse visits to my home?
• Will my insurance pay for medical equipment delivered to my home?
• Will my insurance pay for medication courier serviced to my home?
• Can oxygen pumps help me sleep better?
• If I rely on oxygen to help me sleep, will it make me more dependant on it during the day?
• Who decided the air flow rate of the oxygen equipment?
• What is the cause of my puffy feet and ankle? What can I do about it?

(Added: Tuesday January 16, 2007)

(Thursday Jan 4, 07)

A bit of a concern
I had a little scare today but ended up OK. I have been getting easily winded lately and my chest discomfort continues so I decided that I should get checked out before I leave for the cruise. I was concerned that liquid was collecting in my chest again. Fortunately I was able to get a last-minute appointment with my oncologist this afternoon. She said my breathing was diminished so she ordered blood work and a chest x-ray. I was really concerned about cancerous liquid collecting again and having to have the liquid extracted the day before we depart for the cruise. Fortunately the x-ray did not reveal anything to be concerned about and my blood work was good. My oncologist and I think the chest problems are related to the Xeloda oral chemo pills.

(Saturday Jan 13, 07)

The end of another great trip
Today we returned from a great cruise! The weather, although very windy, was very good. The rough waters unfortunately did not allow us to land at our port in Grand Cayman so we missed out on the snorkeling excursion I was very much looking forward to. But we had great weather for our ports in Haiti, Jamaica, and Cozumel Mexico. Unfortunately I did not feel nearly as well has expected and hoped. My chest discomfort continued and early into the trip I started getting occasional abdominal pain. It hurt when I coughed, sneezed, and even laughed. It was most noticeable while trying to fall asleep. I was unable to fall asleep on my sides as I like to do because it was too painful. It was very difficult to find a comfortable sleeping position. Even with the help of my Ativan pills, most nights it took 2-4 hours to fall asleep. Very frustrating! Thus I was sleepy the following days. I slept too much of the cruise away. But it was still a great time! I felt my best while snorkeling in Cozumel and climbing the 600-foot terraced Dunn's River Falls. Climbing the falls was a bit tricky at times, with an element of danger, but a lot of fun. We all had many, many laughs aboard the ship! And I gained three pounds thanks to the great food and service on Royal Caribbean's Navigator Of The Seas.

(Tuesday Jan 16, 07)

Chemo and oncology appointment day
I spoke with my oncologist about the abdominal pain I experienced during the cruise and particularly over the past few days. The pain was constant starting Saturday morning all through last night. I was concerned that my chemo treatment would have to be postponed until we determined what was causing this pain. If you recall, last September is when I found out the cancer had returned to the lymph nodes of my abdomen and liver. Of course my concern was (and still is) that the cancer is spreading in my abdomen, causing this pain. Fortunately the pain had greatly diminished today so I was able to start another round of chemo. Sounds odd to say that I was glad to get chemo. I will have a CAT scan if the pain returns.

I need to feel better this round
I asked my oncologist what I should do differently this time so that I feel better the week or so after chemo. The last round was rough. I will be taking the anti-nausea med Decadron (dexamethasone) along with the Zofran I have always taken. She said it might help with the nausea, fatigue, and possibly improve my appetite. I hope so. My plan is to also wear the pressure-point wrist bands that many people use to reduce motion sickness.

My next PET scan is Feb 1 with results on Feb 6.

Having a slightly better hair day
My hair started getting a little darker and grew in a bit while on vacation. My oncologist thinks the heat and humidity helps speed the process. Looking back, I recall my hair growing faster while in Disneyworld last spring and Galapagos last fall. I hope the opposite isn't true and that I still have hair after this current streak of zero degree temperatures.

Having cancer is expensive
My known medical expenses have exceeded $250,000. The maximum out-of-pocket expense with my insurance plan is $3,000 a year. And of course my medical expenses far exceed that amount so I've had to pay the max each year. And now I'm into my third calendar year since the diagnosis. I can think of more enjoyable ways to spend nine grand. The anti-nausea meds I picked up today for this round of chemo is valued at $1,333.00. My responsibility is $728.04 so out came the credit card.

(Added: Thursday January 25, 2007)

Well I survived another round of chemo. Fortunately this round was overall more tolerable than the last. I felt less nauseous, had a better appetite, food tasted less salty, and I was less fatigued. I am confident the extra anti-nausea med Decadron made life a bit easier.

I'm not saying that it was an easy go-of-things because it never is, and never will be. There were rough periods over the past week filled with abdominal pain, diarrhea, nausea, and fatigue. When asked by others how I feel, my answer is usually relevant as to how awful I have felt in the past, not how I truly feel. My "good" or "OK" response is quite different from how "typically healthy" people would reply. I am confident that most people would not enjoy my best days. It continues for me that I can feel fine one moment then be experiencing intense abdominal pain the next. I never know if it will last a brief moment or ruin my evening.

I also don't seem to sleep as well since taking the Decadron. I have to get up several times during the night to urinate. Not sure it it's a side-effect or not?

I ain't done dreaming yet
I set the bars high with Galapagos. I don't know if a trip like that can be topped but I can dream. Now I get excited when I think about taking a two-week safari in the heart of Africa. I would like to see what else Mother Nature, and her amazing wildlife, has to offer. There's a whole lot of world out there that I'd like to see. Whether I can make it happen, who knows? There are definite risks and uncertainties with me traveling for an extended period of time, particularly in remote regions where access to good health facilities is few and far between.

Years ago I saw an Imax documentary on Galapagos. At the time I never would have imagined that I would ever experience it for myself. So why not Africa?

(Added: Wednesday February 7, 2007)

(Saturday Jan 27, 07)

Youch!
I woke up today with shortness of breath. Quite unusual for me. And my chest pressure was stronger than usual. Later that day I ate a portion of food that was probably too large and I did not feel well as a result. I need to remind myself to eat in smaller portions. It's tough though after going through over a week of food tasting like salt. I tend to eat and eat and eat as much possible while it tastes appealing. Especially when I know that I could use the weight and that another round of chemo is just around the corner.

(Tuesday Jan 30, 07)

A very sad day for our family
Today I was very saddened to hear that Gary, a family-in-law member, died of esophageal cancer. He was diagnosed in 2003. He is the husband of my mother's cousin's daughter. (I hope I got that right). His wife Gwen began our dialogues after my struggle with the same cancer began. I had forgotten that he was suffering from this horrible disease. In the past I really didn't see Gwen and Gary that often. She lives nearby but we only saw each other two or three times after my diagnosis. However we shared our stories and our struggles through many e-mails. I have now become very close to her. That was a very difficult day for me for two reasons. Firstly and formostly, I felt so sad for Gwen and their family. I know how much they loved him and his battle was very, very difficult. I cried for myself too as I was a few short days away from learning my own fate.

(Saturday Feb 3, 07)

Friends and family pay their respect to Gary
His death hit too close to home for me. I didn't know if I would have the emotional strength to even go to the visitation before the funeral service. I knew that I would not hold up well during the service so that was never in my plans. Funeral services are difficult enough. In my case I would have kept imagining how I will soon be in the same situation. So today I woke up and was confident that I would have the strength to see Gwen. I really wanted to see her and I'm so glad that I did. I did not attend the service. I later heard that it was a very uplifting service and maybe it would have been good for me to have been there after all.

(Tuesday Feb 6, 07)

A day I dreaded... a day I expected
E-mail to family and friends:
Unfortunately I did not receive the results that I had hoped, but rather the results I was expecting. The tumors are increasing in size in all three areas where the cancer returned last fall. I started a new chemo today that will hopefully slow down the growth of these tumors. I am quite realistic about my future (and have been since last September) that 2007 will be my last. However, there is still time for laughs and more good times and hopefully I can sneak in a few more trips.

A 'No Reply' to this e-mail is actually a preferred reply. I'm sorry if this sounds cold or impersonal but it's easier for me to deal with not having to reply to many "I'm sorry's". And I know how difficult it must be for you to try to find the right words or afraid of saying the wrong. And when I see you next time, as I have said before, a simple "hello" is what I'd like to hear.

So please know that I know that I am in your thoughts and prayers. And most importantly, I know that I have lots of love around me, support, and plenty of assistance if needed. And I will ask for help when needed.

Mark

I have a lot to say. Don't expect any rhyme or reason to my notes. Off we go...

I have been experiencing a lot of abdominal pain for the past month and a half. I wasn't telling very many people that I was in pain when they asked how I was feeling. I didn't intend to be dishonest. I was afraid of worrying people and I know that if I were completely honest all of the time it would have seemed to others that my days were pretty miserable. And now I can honestly say that most of them have been lately. Most days I would wake up OK but would start having pain about 9:00 AM that would continue and increase in intensity as the day progressed. I think I was able to speak to most people face-to-face without them even knowing that I was in pain. And since I found out last September that my cancer had returned to the lymph nodes of my abdomen, I was very concerned that the cancer was taking its toll. And that is why I was expecting bad test results yesterday. The days leading up to my PET scan results I started dropping hints to some people that I have had a lot of pain lately. I guess it was to kind of lessen the shock of the news that I was expecting.

During the oncology appointment I handled the news, not as news, but rather a confirmation of my suspicions. I hesitated to ask, but felt I needed, to get a time table. Even though I already knew the answer, I asked if I should expect to pass this year. My lips quivered and I held (tried anyways) to fight back tears. It's an unbearable question to have to ask knowing the answer will not be good. She said that the average person with metastized (the spread of cancer from it's origin to other parts of the body) esophageal cancer is six months and I am nearing four months since my Stage IV diagnosis. She did say that I am doing better than most so hopefully I have several more good, relatively-healthy months.

I started a new chemo today, Irinotecan (Camptosar). It received full FDA approval in 1998 as a second-line treatment, and as a first-line therapy in 2000, for metastatic colorectal cancer. The limited effectiveness of chemotherapy in esophageal cancer used to palliate (relieve without curing) metastatic disease. Irinotecan has shown promising activity in a number of gastrointestinal cancers, including esophageal cancer. Like other chemos I can expect nausea, hair loss, and decreased white blood cells. And it sounds diarrhea is a very common side effect. My oncologist and I spoke about this unpleasant side-effect for about five minute so I get the impression that it could be a big problem. I was prescribed two meds for when the diarrhea kicks in and additional meds to reduce nausea.

So what happens next?
My new chemo schedule will be a little more grueling in that I will go once a week for four weeks then have two weeks off to allow my body to recover. A future PET scan will determine if this chemo is helping. If not, my oncologist said there is one more chemo I can try or begin a phase-2 trial clinical study of Cetuximab plus Cisplatin and Ironotecan. These are the words from Memorial Sloan-Kettering Cancer Center, in Manhattan, one of the few testing centers in the U.S. conducting this clinical trial:
At present, there are very few active chemotherapy drugs to treat metastatic esophageal and gastric cancer, especially in patients whose cancer continues to grow after initial treatment. The purpose of this study is to determine if adding the drug Cetuximab to the chemotherapy drugs Irinotecan and Cisplatin can benefit patients with metastatic esophageal or gastric cancer that continues to grow despite prior treatment with Irinotecan and Cisplatin.

In patients with metastatic colon cancer, Cetuximab appeared to result in more tumor shrinkage when it was given with the chemotherapy drug Irinotecan, even in patients who had been treated with Irinotecan before. Cetuximab given by itself, or in combination with chemotherapy, has been approved by the FDA for patients with metastatic colorectal cancer as well as for those with head and neck cancers.

I honestly don't know how far and for how long I will want to continue with chemo treatments. It is very exhausting and has been frustrating that nothing seems to be working for me. Of course I hope my current chemo slows down the growth. I am not expecting a miracle at this point, just some more quality time. I'm not there yet but at some point I have to raise the white flag.

I wish my prior chemos were more effective than they have been for me. At least I won't have to take Xeloda, the oral chemo, since that was giving me so much grief. I'm also hoping my appetite will be stronger now and the peeling and roughness of my hands and feet will continue to improve. It also seems my chest pressure has gotten less noticeable. A good thing since I had it almost all of the time.

Some of my meds will fatigue me (as with the chemo) and some will reduce fatigue. So far, the first full day after chemo I am doing OK. I worked a full day today. I got a bit sleepy near the lunch hour but perked up a short time later. I felt a little nauseated but not bad. I did not get very much sleep last night so this may not be a good indicator of how fatigued I will get in the upcoming days.

My oncologist and I talked about the abdominal pain. She is not surprised with the results of the PET scan the way they were. She suspects that as I eat, it is putting pressure on my abdomen and surface of the liver. Here are the results of the PET scan:
• There is an increase of cancerous fluid in my left lung, suspicion for metastases of the lining of my lung.
• Within the abdomen, there in an increase in the front and side of the liver, suspicion for metastases of the lining of the abdomen cavity.
• Poorly-defined increase in the region of the 'porta hepatis' – the opening for major blood vessels to enter and leave the liver.
• An increase in the right proximal iliac chain lymph nodes. Sorry for all those medical terms. I don't even know myself what or where these are. I was unable to find a clear definition of this on the internet. Is there a doctor in the house?
• An increase in the lymph nodes of the Aorticopulmonary (AP) window. The best definition I could find for this one is a congenital anomaly consisting of a communication between the ascending aorta and main pulmonary artery.

So you don't have to be a doctor to know that my results are bad, real bad.

I was prescribed Vicodin for pain relief for my abdominal pain. Fortunately, the past four days I have had very little abdominal pain.

That dreaded guardrail
So today was a challenging drive in the morning and lunch hour with very slippery road conditions from a light snowfall during the morning rush hour. So on my way home, about 4:00 PM, I took the same fateful route I took late in December '05 after returning from an emergency care visit. By the afternoon rush hour the roads were in surprisingly good condition except for the same entrance ramp leading onto northbound highway 169 from Highway 7 in St. Louis Park. I approached this ramp with a bit of caution as I could see there was slush just as it merged into the highway. That's where I hit heavy slush last time that then pulled me into the guardrail and flipped me around striking my drivers side. The slush didn't look as ominous today. I drove passed it OK and noticed that some unfortunately soul before me did not, probably earlier that day. The same guard rail that I wrecked looked like the way I left it after my impact with it. I even went so far today as to drop an e-mail to Minnesota Department Of Transportation. Here it is:

Hi, I was involved in a one vehicle collision with a guardrail on December 30, 2005. The guardrail is located at the end of the entrance ramp leading onto northbound highway 169 as you exit Highway 7 in St Louis Park. I hit some heavy slush on that day, as the slush was not completely removed from the ramp. I hit the guardrail hard in the front of my vehicle which forced me to spin around resulting in a hard impact on my driver side. Fortunately I was not hurt.

I noticed yesterday, another day full of accidents, that somebody had the same fate I did (or at least I assumed it happened yesterday). It looked like it had fresh wounds.

Here is what I don't understand about this guardrail. It seems to be so much longer than it needs to be. It appears to extend about 60' from a light pole (I believe it's a light pole) and isn't needed for a drop in terrain off the shoulder. In my opinion this guardrail could be much shorter. At least in my case I would not have hit the guardrail. I just would have gone into the ditch and wouldn't have totaled my vehicle. Please review this guardrail design before it is repaired once again and could lead to further injuries. Thank you! (I left my name and phone number)

Palm Pilot overload
For those not familiar with the term Palm Pilot, in my case I have a device that includes my cell phone and programs to store my personal contacts, prompt me of events on my calendar, and reminds me of tasks that I need to do at specified times throughout the day. I don't know how I would keep track of my daily regimen of drugs and too-frequent medical appointments without it.

What scares me now?
I am terrified at the thought of having to enter hospice care. I expect that I will someday need home hospice care. The thought of having to enter a hospice facility is so frightening that I can't even see myself allowing it to happen. I'm afraid of those final days and weeks and how I will feel and how reliant I will be on others to do simple tasks such as eating, dressing, going to the bathroom, and breathing without the help of machines. That's what really scares me now.

I could use a little fun right about now
I am so excited about a trip I scheduled for February 22-25 in San Diego with my 9-year niece and 12-year old nephew. On our first full day we are going to SeaWorld where we will have lunch next to Shamu's Orca Whale show. We will go on a one hour 'Animal Spotlight Tour' that will give us the opportunity to touch and feed bottlenose dolphins, feed moray eels, and feed sea turtles.

Our second day will likely be a day of hiking along the coast in some of the beautiful parks around San Diego, maybe rent bikes, go to an ocean side amusement park to try to win stuffed animals, let the kids swim in the hotel's outdoor pool if it's warm enough, maybe catch a drive-in movie. It should be a great day!

And on our last day, I booked a whale watching tour aboard a 30' U.S. Navy SEAL Deployment Rigid Inflatable Boat (R.I.B.) custom built for the U.S. Department of Defense, Naval Surface Warfare Division, U.S. Navy SEAL, and Underwater Demolition Team. And it only holds six passengers so we make up half of them which should give us a very personalized experience with our captain who will also serve as onboard naturalist, relaying a wealth of information about the natural history and migratory habits of the California Gray Whale. Should see dolphins too.

From December through March, visitors to San Diego have the unique opportunity to glimpse one of nature's most extraordinary events—the migration of California gray whales from the chilly Alaskan seas to the warm water lagoons of Baja California where they birth and rear their young. Each winter, tens of thousands of these "peaceful giants of the sea" come within a few miles of the San Diego coast on their 5,000-mile southern journey, the longest known distance any mammal migrates on an annual basis. With 70 miles of coastline, San Diego makes an ideal location for viewing this impressive parade. During the peak migration season in mid-January, as many as 200 whales per day have been counted off of San Diego's shores. Hopefully we get the chance to see a few of these amazing creatures. There is nothing like seeing them so close in their natural environment and only be about three feet about the ocean surface in a rubber raft. I did this in Puerto Vallarta a few years ago. Amazing!

So I treated myself at dinner tonight
I boiled me up some Snow Crab and later some asparagus with butter. Yummy!

(Added: Thursday February 15, 2007)

(Saturday Feb 10, 07)

My first week of this new chemo
Well it's day five of my new chemo and so far it's going relatively well. I have little nausea, a fairly strong appetite, and I'm less fatigued. I still like my naps though and some days I need one. And thank goodness I have experienced little abdominal pain since last Saturday which is actually three days before starting this round of chemo. I now wonder what was causing that pain. Was it the combination of the two chemos I was previously on? My hair is coming out a little bit but I am not expecting a complete fall-out. And the fear of diarrhea affecting my every-move hasn't materialized (that much that is). So that's a good thing. That's enough about that subject.

(Monday Feb 12, 07)

How much do I really need?
I have had (I don't think unusual) thoughts in the past, particularly since I found out in September of last year that my cancer aggressively returned. While shopping for non-food items I will pick up an item and wonder how many "I really need". Just today I had zip-lock sandwich bags on my shopping list. The box contains 50 bags. I hesitated for a moment and wondered if I really need two boxes. These thoughts have definitely impacted my shopping habits. This past fall I considered purchasing a new leather winter jacket but it just didn't make sense. I would only get one season from it.
Oh... I ended up buying two boxes.

(Tuesday Feb 13, 07)

Round 2
Today was round two of this chemo. I briefly spoke to my oncologist about my desire to travel to Africa. I wanted her opinion as to whether it would be too risky for me since I may be more susceptible to disease with lowered white blood cell counts at times. Vaccines for travel should be administered six weeks before departure. In my case, I need to be covered for Malaria, Meningitis, Rabies, Typhoid, and Yellow Fever. My oncologist did say that the vaccinations would not be as effective in my case if administered during chemo treatments. But taking the vaccinations would not impact the effectiveness of my chemo. She is encouraging all the travel I care to take.

(Thursday Feb 15, 07)

Planning the unpleasantries
I faxed a completed cremation form to Cremation Society Of Minnesota. It will cost a bit over $1,200 for a simple cremation with an inexpensive urn and with no reception service at the cremation facility. I also started my plans for the reception that will be held after my death. It will be non-traditional.

(Added: Thursday March 1, 2007)

(Tuesday Feb 20, 07)

Hernia --- wasn't expecting one of those
For the past two months I have noticed an unsightly little bulge protruding between my lower rib cage. It was getting slightly larger as the recent weeks passed. I wasn't concerned about it though. I thought it was just part of my new, weird stomach configuration. I finally remembered to show it to my oncologist and she said I have a surgical hernia. Hernias can occur beneath an old surgical scar. When the pressure on a hernia rises, the bulging tends to increase. My doctor told me that I only need to worry about it should it become painful or if it sticks out "too" much when I lie down. For now, it flattens nicely when I lay down, which is a good thing I guess.

Had chemo today: 3rd of 4 of this weekly series. You have know idea how quickly a week goes by when you realize that it's yet another Tuesday and you have to endure another chemo injection. (yuck)

Considering another big trip
I asked my oncologist how I might feel in May for traveling (Africa?). She says it's possible that I may be healthy enough in May. I am concerned though as a lot can change for me in three months. If I decide to go on a safari in March instead, we would rearrange my March chemo schedule by delaying treatments for a few weeks. My oncologist really wants me to travel as much as I can, while I can. And so do I. April tends to be the beginning of the rainy season in East Africa so there are not any safaris scheduled from April to late May with the same tour company that I used for Galapagos Islands. I just don't feel comfortable waiting to see if I will feel healthy enough in late May/early June.

I received polio and typhoid vaccines for Africa (just in case it works out). I will get Malaria and possibly Meningitis vaccines shortly before departure if I confirm a safari.

My net PET scan is March 13 to see if this chemo is having any impact. If the cancer is stable or even slightly larger, she will want to do another series (4 weeks on, two weeks off) to see if another series will make a difference worth putting me through additional chemo. If the tumors are still increasing too rapidly I would likely discontinue this specific chemo. I'm running low on options and honestly running low on wanting to keep enduring chemo after chemo only to get frustrating results.

(Wednesday Feb 21, 07)

This hasn't happened in a while. And I didn't miss it a bit.
I vomited today for the first time in many months. I think it's because I ate too much (too much in my world is different from most people's world). Overall I have been feeling more nauseous after eating meals with this week's chemo.

(Sunday Feb 25, 07)

Great Times!
I returned from a trip to San Diego with my niece and nephew. We had a fun day at Sea World (fed dolphins, moray eels, and sea turtles), hiked around the shore coasts, played Frisbee on the beach, and played a dice game on borrowed hotel towels as the sun set on its way toward a distant land. My niece and nephew have never been to the West coast so they were able wade in the cool Pacific waters for their first time in pursuit of the perfect seashell. We also went whale watching on a small, six-passenger rigid, rubber raft. Unfortunately we were shut out on seeing whales. The water was a bit too wavy to see any whales or their water spouts. Perhaps we were close and didn't even know it. Although we did get very close to three different species of dolphins; Bottle-Nosed, Pacific White-sided, and the much less seen Risso's. It was fun to roll around the ocean waves for a couple hours in pursuit of the migrating gray whale. And the dolphins were beautiful and fun to watch them dive in and out of the water near us as they munched on bait fish skimming at the surface. We got very close to the dolphins. Our guide told us that he doesn't recall ever seeing these three species on the same outing. His outing the day before ours did see three whales though. Drats! --- missed them by one day.

The first two days in San Diego I did have some more nausea but not to the point of effecting our great long weekend. Diarrhea is becoming more of an issue now. I'm down to 142 pounds. I haven't weighed this little since last June 4. I know it's because this weekly chemo cycle isn't giving me the last "free" week where I can fully enjoy food and gain some of the weight lost during chemo. I just don't have a break in the action any more.

(Tuesday Feb 27, 07)

Thoughts
Had chemo today: last of this series. Now I have two weeks off (in a row). That's huge for me with this grueling schedule. During injection, while resting in my comfy recliner, I wondered if this could be my last chemo treatment. If the next PET scan gives me more dire news, I will have to give some very serious thought as to how much more I want to endure. That's about all I'm going to say about this subject matter at this time. I really have no idea which direction I may go when I have to make my next major decision. There are just too many major decisions that have to be made over the course of choosing your own cancer treatment. I don't know how many times I have said the word "overwhelming" in this journal. And I can't imagine anyone going through it without second-guessing what they did or what you should do. I don't beat myself up over it though. Even though I'm not getting the results I'd hoped for, I feel I have made good and proper decisions based on what I knew at the time and I have taken care of myself throughout. I still cannot believe that I haven't even gotten a sniffly, cold since this all began.

(Tuesday Feb 27, 07)

Really great times to come! I'm heading to Africa!!!
Today I booked a 14-day African Safari that will whisk me off to the great parks of East Africa in Kenya and Tanzania. I will visit Tanzania's "must sees" of Tarangire, Serengeti, Ngorongoro Crater, and Oldupai Gorge. Kenya will treat me to Amboseli National Park noted for its elephant herds and dramatic views of Kilimanjaro. Masia Mara is said to be Kenya's game country at its best. I will depart March 23 and arrive in Amsterdam early the following morning which will give me a full day to explore a city that I love but had so little time with it when I traveled through it for business. The following morning I leave Amsterdam on my way to Kilimanjaro airport in Tanzania where the "another trip of a lifetime" really begins. I am so excited about it! I will be traveling solo again as it is a very $$$ trip and will keep me from home for 2-1/2 weeks. My return flight departs from Nairobi Kenya through Amsterdam again (with a four-hour layover) then back to Minneapolis, arriving April 7. That will be a grueling 21 hour travel day (in coach seats). Too bad I couldn't cough up another five grand or more to fly business class. At least my trip to Africa will have a full days break in Amsterdam which will help me adjust to jet lag and time zone changes.

Now I need to work on my appearance
I haven't been exactly pleased with my stark facial features in photos, particularly with my weight loss and barely visible eyebrows. So last week I decided to start growing facial hair again. I will eventually trim it down into a goatee. Even the facial hair is growing in much slower than it use to. But it is growing. And it's growing in patches of gray and darker colors so who knows what it will look like once it thickens up a bit and it's trimmed down to a goatee. I'm hoping it makes me look healthier. Less like somebody going through chemo is my goal.

(Friday Mar 2, 07)

A very good-feeling day
I have not felt this well in such a long time. This has been a great day! And even though this was a chemo week, I felt very well these past few days with very little chest pressure. And more importantly, it's been several weeks since I've had abdominal pain. It really makes me appreciate a healthy-feeling day!

To sum up this journal entry... so excited about the Safari !!!

(Added: Thursday March 15, 2007)

(Sunday Mar 4, 07)

Well at least...
After feeling "nearly perfect" this past Friday and Saturday, severe diarrhea kicked in today. Well at least I wasn't in a wrestling tournament today.

(Thursday Mar 8, 07)

Concern
I have been feeling different in my chest area and am really concerned that "things are starting to take over". And now I am concerned about my health during the trip to Africa. I will be home from the trip in exactly one month. I hope things don't progress too quickly. I am really excited about my trip and really need it to go as well as my Galapagos trip! It's going to be an amazing time and experience. I love nature and look forward to all that Africa has to offer.

(Sunday Mar 11, 07)

Putting a little more pressure on the scale
I gained 7-1/2 pounds this week, a tie for the most I have ever gained in one week since this all begin (probably in my life if I really think about it).

(Tuesday Mar 13, 07)

Another uneventful PET scan

Living on borrowed time
Well nearly six months after being told that I have about six months to live (if I didn't continue chemo), rather than dying I am within days of an amazing trip and experience to the Great Parks of Kenya and Tanzania in East Africa. But I continue to feel that I am living on borrowed time. The chemo so far hasn't done the trick and I am scared that this new one may not be either.

(Thursday Mar 15, 07)

This qualifies as a good day
I received some overdue, unexpected good news today. The results of my PET scan on Tuesday were very good. All of my tumors have either reduced in size or disappeared. They do not see any new tumors either.

Here is a comparison of my most recent two PET scans:
• From February 1 PET scan: There is an increase of cancerous fluid in my left lung, suspicion for metastases of the lining of my lung. From March 13 PET scan: "The lungs appear clear."
• From February 1 PET scan: Within the abdomen, there in an increase in the front and side of the liver, suspicion for metastases of the lining of the abdomen cavity. From March 13 PET scan: "there has been significant improvement..."
• From March 13 PET scan: "The previously noted focal areas of increase uptake (presence of cancer) along the pleural surface of the left lower thorax have resolved [basically no longer visible]. This measures 1.7 cm in maximal thickness, decreased from 2.5 cm on the 2/1/07 PET/CT scan."
• From March 13 PET scan: "The previously noted high uptake in several lymph nodes in lower mediastinum (the space in the thoracic cavity behind the sternum and in between the two pleural sacs containing the lungs), just above the diaphragm, are improved. There is still high uptake in these lymph nodes however, consistent with residual viable tumor. The mediastinum appears otherwise unremarkable."
• From February 1 PET scan: An increase in the lymph nodes of the Aorticopulmonary (AP) window. [The best definition I could find for this one is a congenital anomaly consisting of a communication between the ascending aorta and main pulmonary artery]. From March 13 PET scan: "the previously noted increase...in AP window region lymph nodes has resolved."
• Conclusion of March 13, 07 PET scan: "Overall, there has been a significant improvement compared to 2/1/07 PET/CT scan. Many of the previously noted areas of metastatic disease have resolved. There is however still residual intermediate to high uptake in mild lymphadenopathy (chronic, abnormal enlargement of the lymph nodes usually associated with disease) in the lower mediastinum just above the diaphragm as well as over the peritoneal surface of the liver and in one or several proximal right chain lymph nodes. Overall, these findings are consistent with a partial, but incomplete, response to treatment."

My oncologist and I were surprised after continuing to get bad news after bad news. It seems the new chemo Irinotecan (Camptosar) that I started February 6 is helping. Finally, a chemo that appears to actually be doing some good.

Taking in the news
I sent an e-mail out to many friends/family today informing them of the good news. I almost used the word "great" but decided to use "good". The reality of the unexpected improvements in my condition means that I return to the world of chemo. And a return that started less than two hours after getting the good news. I have felt pretty darn good over the past few weeks. It's difficult for me to know that I will have to endure another seemingly endless cycle of weekly chemo. This may be difficult for some people to hear, and understand, but I was (almost) at peace with living out my final months feeling as well as possible for as long as possible. The thought of not having any more chemo was almost tranquil. A person would have to have the amount of chemo I have had and the "unpleasantries" (made-up word) that accompany it to fully appreciate my mixed emotions. When will the chemo end? And when it does, will the cancer return with a vengeance as it did last year after my very short remission? I hope this explains why I may not be as excited as one would think following such news. Although (of course) I am very pleased!

I am scheduled for chemo next Thursday, one day before I leave for my 17-day trip to Africa. I was not expecting to have any chemo before my trip but I need to continue the momentum of this chemo. I was really expecting to feel well during my trip even though I did have concerns about the "unexpected" and being in a third world country for such a long period of time. I am concerned about how I will feel for my long flights ahead, my day in Amsterdam, and bouncing around the jeep in Africa. I am concerned about the side-effect of diarrhea making my trip very unpleasant at times.

Look for my next update in about one month
I return from Africa April 8 and will have chemo treatment the following day and the following three Mondays. My return will be a tough week with the exhaustion, jet lag from a 22-hour commute home, and chemo. I will update my journal when I find the time and energy.

In the meanwhile, I have updated my personal web page with San Diego trip photos and plan to add Caribbean cruise photos this weekend. http://home.comcast.net/~markymark1964/

I cannot wait to share photos and stories from my trip!!!

(Added: Wednesday March 21, 2007)

(Saturday Mar 17, 07)

I need to clarify something
I didn't have intentions to update my journal again before my trip but over this past weekend I was a little concerned that my previous journal did not come across in the manner that I wish it would have. I don't like how I ended my paragraph regarding the good news with the sentence "I hope this explains why I may not be as excited as one would think following such news." In hindsight I realize that it may appear as if I am not grateful when in fact I am VERY grateful. I revised that paragraph so now the last sentence is "Although (of course) I am very pleased!" This is a minor, but important, change. I truly am ecstatic with the test results!

(Sunday Mar 18, 07)

More of the ups-and-downs
After gaining a whopping 7-1/2 pounds two weeks ago, I lost 8 pounds this week. Oh – the joys of chemo.

(Monday Mar 19, 07)

No lion is going to be sneaking up on me
I decided over the weekend that I have put so much money into my safari that a little more won't matter. So I decided to order night-vision binoculars from the internet. I know we will be doing a couple excursions to view the nocturnal animals frolic and feed at night. I am really looking forward to that aspect of the safari. So I thought why not buy a pair of night-vision binoculars to get an even better view of the animals after the sun goes down. These binoculars will be a lot of fun to use!

(Tuesday Mar 20, 07)

Please pass the butter (and the gravy)
After reading a pamphlet from the Mayo Clinic called "When Eating is a Problem. Recipes and Suggestions for Increasing Calorie and Protein Intake" I realized that my dietary intake has been too healthy lately. This pamphlet was given to me by a family member who went through this issue with her husband resulting in his excessive weight loss. I lose too much weight during chemo but it's Catch-22 because I do not feel well if I eat too much. So I need to return to a diet of eating smaller portions of "bad" foods similar to the diet I was on last spring when I had so much weight to gain back. I need to use more butter, creams, gravies sauces, cheese, dressings, eat high-caloric snacks and desserts and drink soda. You get the idea.

It's been a while since Home Depot has seen me
I did a simple home-improvement project of converting a two-outlet wall plate in my bathroom to one-outlet with a switch that provides power to vanity lights over my sink. I was very pleased with myself for three reasons: 1) that I worked with electricity and did not electrocute myself; 2) my project actually worked when I was done (OK – not the first way I had it wired but the second way). Now whether it's up to code is quite possibly another story; 3) this is the first home improvement that I have done in nearly one year. It felt good to even want to make an improvement. For me it was easy to think "does it really matter" when I felt I had been given such little time. I have also been exercising on my elliptical machine for 1/2 hours per day for the past week or two in preparation of my trip. I feel great that I am feeling well enough to exercise again! I will avoid strength training because I don't want to aggravate my surgery hernia. It's hideously sticking out of my belly. I am starting to wonder if it's a space alien getting ready to rip out of my stomach as in the scene from the 1986 film Aliens.

(Wednesday Mar 21, 07)

I am doing well
This round of chemo was fairly easy on me. The reduced appetite and weight loss will likely always be an issue. However, I have felt well over the past several days. I have chemo tomorrow and hope this round goes smoothly too so that my trip is enjoyable from start to finish. Well, except the long flights. I just want to pass out and sleep through that part of my vacation.

(Added: Sunday April 15, 2007)

(Sunday Apr 8, 07)

Simply Amazing!!!
I'm back from an amazing adventure in Africa! The trip exceeded my high expectations. Tanzania and Kenya was so much more beautiful than I expected. I guess I was expecting to see nothing but the plains of Serengeti. We saw so many animals and we got so much closer than I anticipated to huge, powerful, and beautiful animals. We ate great food and stayed at very interesting lodges along the way. Each lodge, and every day, brought a new adventure and story to tell.

I safari'd with six great people that made the trip fun and always interesting. One of the fellow travelers was a representative from the tour company through which I booked the safari (and Galapagos Islands). He knew of my medical situation ahead of time and I assume he told his girlfriend who traveled with us. I did not tell the other four women in our group as I did not want to change the group dynamics by tossing a downer-grenade into our trip. There was one day where I really felt like I was unfairly keeping a secret from them. It was the day that I wore short pants and a short-sleeved shirt for the first time. It doesn't take a doctor or a rocket scientist to notice how skinny I am and that something just isn't right with me. I thought for a little while that they deserved to know but decided it wasn't necessary to disclose it during the trip. I struggled a little with this issue because I thought we had become good enough friends and they deserved to know the truth. I still haven't decided if I will ever inform them through future e-mail communications.

The trip was a bit physically difficult for me but I am very pleased how well I endured. I did have severe diarrhea for the last 2/3 of the trip. It made some moments "challenging" and nerve-wracking to say the least. Most days we did a morning and late afternoon safari. I only missed two safaris due to diarrhea and I skipped a late morning safari to get caught up on sleep. I lost 3-1/2 pounds while on vacation. I was surprised that I didn't lose more weight than that considering how relentless the diarrhea was. Other than that I bounced around the back of the Land Cruiser like a rag doll. Most of the roads we traveled on were in really rough shape. But it was fun watching the animals and landscape from within our Toyota-made safety cage. I borrowed a hotel pillow, towel, and an inflatable seat cushion to help soften the bounces.

Most of the lodges we stayed at were set within the park system. The lodges were often setup with rooms that are separate from the lobby/dining area with access via short walking paths. That made every night exhilarating because it required that a security guard walk us to our lodge room. It wasn't people that we needed to be protected from, rather animals such as lions, cape buffalo, elephants, and even hippos. It was usually OK to walk to/from our room during the day without the assistance of a guard. There were a few times during dusk, without a guard, that made the walking a bit interesting. I wondered what might be lurking in the bushes. In fact one night I decided to walk to the restaurant on my own at 7:00 just as the sun was beginning to fall into the horizon. I found out later that two lions were seen by the pool at about the same time. Usually the guard just carried a flashlight and a stick. The idea was to shine the flashlight ahead of the path to warn any creatures that we were approaching. The last thing you want to do is startle a dangerous animal. A few times security was armed with a gun but that was the exception.

I found the beds of the lodges we stayed at far too firm. It was particularly difficult for me with my weight loss. I would take extra blankets and fold them in half or quarter, length-wise, and place them under my lower sheet to help soften the sleep experience. It helped a little but overall I didn't sleep well while in Africa. The exciting sounds of nearby animals also contributed to interrupted sleep. I would often (carefully and quietly) get out of bed and peer out my tent screens in hopes of seeing an elephant, lion, or cape buffalo, or hippo walk by. Unfortunately I only heard the animals. They often sounded close but they went undetected. I think the baboons or monkeys made the most noise. They always sounded like they were fighting. But it was an awesome experience to be right in the middle of these creatures, often with just canvas walls.

Our weather was absolutely perfect. April is the beginning of the rainy season for Tanzania and Kenya but we were spared the moisture. I didn't even get bit by a mosquito. I find this very interesting because fellow travelers were bitten several times. I wonder if it is because I am full of chemo. I did a little research on our pesky-pesk, the mosquito. Mosquitoes are attracted to humans by the initial odor consisting of carbon dioxide and a range of chemicals found in human breath, sweat, and excreta. We produce up to 400 of these as by-products of our body metabolism, and most of them are released through the skin. I wouldn't be surprised if all the chemo-chemicals flowing through my body made me less than desirable to the mosquito palette. I asked my oncologist about this and she had never heard of anything to support my theory. Who knows?

I should have my personal webpage updated with pictures and highlights by the end of this week.

(Saturday Apr 14, 07)

Long day (and week)
I don't think I have ever been more physically exhausted as I have been this week. With jet lag, not sleeping well in Africa, returning to another round of chemo, and back to work full time, I guess that's a fair explanation. I slept for almost two hours after getting home from work this week and in addition went to bed early. I had absolutely no energy to do anything, except pay a few bills.

My stomach has not been cooperating with me over the past few days either. Today was a very long, miserable day. With the fatigue and diarrhea continuing, now combined with constant indigestion, I took many naps all day long to find some relief. I thought this day would never end.

(Tax day, 07)

Still shedding pounds
I am now down to 138-1/2 lbs. I haven't weighed this little since last May. And I'm concerned that I will continue to lose more weight since I have three more weekly chemo treatments in April.

I have had shoulder discomfort for a couple months now and have not been able to determine its source. There isn't anything to be concerned about when looking at my PET scans. So that's a good thing. I attributed it to the way I was carrying my stress, possibly in my shoulders. Even prior to cancer, my shoulders would take the brunt of my stress. Recently I think I might have come up with an explanation. I believe my weight loss is forcing my shoulder bones up and away from my chest while sleeping. I can no longer sleep comfortably again on my side. So today I purchased a 2" memory-foam pad to soften my bed. I took a nap this afternoon and it helped but it wasn't quite soft enough. I then purchased a 3"-thick goose-feathered featherbed. I think the featherbed will help me sleep more comfortably.

Well I hope to get more energy and more back to normal soon.

(Added: Monday May 7, 2007)

(Thursday Apr 19, 07)

Starting to sound like a broken record
I realize my journal has not been an enjoyable read lately. I could go on and on how bad today was but it's starting to sound like a broken record. I started a new prescription, Omeprazole, for the severe indigestion that I have had lately.

I added pictures of my Africa safari and trip highlights to my personal website today. Even though the trip was only a few weeks ago, I enjoyed putting the highlights to paper as it brought back the amazing experiences I had in Africa. I wish I could put my short digital videos on the website too. For instance the one with the huge-tusked elephant getting within feet of our vehicle, me jump-dancing while holding a stick and looking like a fool, the one with a huge lion walking right up to our vehicle, baboons climbing down palm trees with little babies holding on for dear life, and Maasai children singing for us.

(Monday Apr 23, 07)

A needed chemo break
Fortunately, or unfortunately (?), I did not have chemo today as scheduled. My oncologist was too concerned about all of the diarrhea that I have had lately. She started me on a new med, Opium Tincture to hopefully get control of the big D. Opium Tincture belongs to a class of drugs known as narcotic pain relievers, but this medication acts mainly to slow the movement of the intestines. This liquid is the worst tasting medicine I have ever had. I also stared taking Potassium Chloride (horse pills) because my potassium level is low from the diarrhea-caused dehydration. Potassium is a mineral that helps the kidneys function normally. It also plays a key role in cardiac, skeletal, and smooth muscle contraction, making it an important nutrient for normal heart, digestive, and muscular function. I had the choice to have potassium injected into me, via a needle, or take the pills. After finding out that I wasn't having chemo today, I opted for the pills so I can get out of the clinic as soon as possible. Besides, one less needle poking works for me.

(Tuesday Apr 24, 07)

A sigh of relief
Today was the first day that I have felt relatively well since I returned from Africa over two weeks ago. I survived the ugly first days of chemo and I think I'm finally caught up on rest.

(Monday Apr 30, 07)

Uncooperating veins
It goes without saying that I really hate chemo days. Today is chemo day. And to make matters worse it took four attempts, and two nurses, to get an IV needle into my arm. I hate the IV needle because I can feel the needle and it feels like it goes deep into my arms. I'm sure it's not as deep as I think --- but nonetheless, it aint' fun. I guess my veins were not in a cooperative mood today. The oncology nurse put some backing into my theory that being under chemo is the reason I did not get bit by mosquitoes in Africa. The nurse has been told by other patients that they do not get bit by mosquitoes while on chemo.

(Tuesday May 1, 07)

The effects of chemo didn't take long to kick in --- it never does. I threw up twice today and napped three times. I nap when I'm not feeling well. It takes me away from the ickyness for a while. I am clearly not tolerating this chemo as well as I used to.

Just say no to drugs
I can no longer take the liquid Opium Tincture to control the big D even though it was working so effectively. I gag at the thought of even taking it and nearly throw up when I do. The taste is bad enough on a good day let alone on day when I am nauseated from the chemo. And unfortunately that is when I need it the most. The taste reminds me of the stomach bile that I was throwing up last spring when I was sooooo sick. Sorry for the gory details. So I have completely stopped taking that med.

(Sunday May 6, 07)

Living With Cancer
Ted Koppel hosted a three hour television program on Discovery Channel tonight called Living With Cancer. It was an interesting program that featured appearances by Lance Armstrong, Elizabeth Edwards, and a personal friend of Ted Koppel named Leroy. All three people are in different stages of their cancer. Leroy was given "six months" but fortunately is doing much better and has outlived that sentence. I related and agreed to most of what Leroy had to say during the program. The Discovery Channel is replaying the show tomorrow (Monday, May 7) but unfortunately I don't see another date when it will be replayed. I wish I would have been able to tell people on my journal about this show as I think most people would have found it very informative.

On the program Lance Armstrong said that cancer was the best thing that ever happened to him. He said cancer has made him what he is today. That was one statement on the show that I was completely unable to relate to. Lance does acknowledge that he is very lucky as he is in remission and feels well. I consider getting cancer to be the worst thing that has ever happened to me and I always will. In my case it's such an obvious statement that I don't know why I even put it in my journal. I guess because it shows how differently cancer can impact a person's life. I am thankful for all of the fund-raising, government-lobbying, and awareness Lance brings to cancer.

Bringing a ladder to bed
I sleep and nap so often that it has impacted my ability to breathe normally. I have lost so much weight that it is once again uncomfortable to sleep on my back. And my back is the most comfortable way that I can find to sleep. Forget about trying to sleep on my stomach or sides. I believe that my back is so bony that it takes such little downward pressure to cause me discomfort. So today I went out and purchased yet another 3" featherbed to place on top of the one I recently purchased. My mattress is now so puffy and thick that I almost need to a ladder to jump into bed.

An overdue cleaning
I impressed myself today by finding the strength, and ambition, to thoroughly clean half my house.
I have very little physical strength again, as was the case last spring when I was scary-skinny. I find myself being fatigued sometimes after walking up a flight of stairs. I had to clean the house in shifts, taking an occasional nap. The house needed a good cleaning and I was proud of myself for really getting in there and doing a top-notch job. I hope to finish the lower-half this week. I do try to exercise every day for 1/2 hour on my elliptical machine.

(Monday May 7, 07)

An overdue journal update
Several people have contacted me being a bit concerned as to how I am doing because I have not updated my journal for three weeks. I have been putting it off for several reasons:
1) I have not felt well lately and it's hard for me to get motivated to do much of anything when I'm not feeling well.
2) I really don't enjoy the actual process of updating my journal.
3) And the main reason for the delay is that I have dreaded putting into words my most current thoughts. I don't think friends and family are going to want to read this.

But here goes...
I might be to the point where I can no longer undergo any more chemo treatments even though I am fully aware that this decision may ultimately threaten my overall health. It's sometimes hard for me to accept chemo as a form of treatment considering its cruel side-effects. It continues to be a relentless force on my body and mind.

This weekly regimen of chemo is far too difficult for me. As I recently told a friend, I am sick and tired of being sick and tired. I do not feel well at least 90% of the time. Therefore I rarely feel happy. This is no way to live. I am concerned that I could very slowly slide into depression if I continue chemo. My day job has been less than enjoyable lately too so that doesn't help as that is a big portion of my day. I could use a lottery winning right about now and start booking more trips to yet-unvisited lands. Or maybe just an exotic beach serving endless Pina Coladas served in pineapple husks while darning those cute little paper umbrellas.

Leroy, the cancer survivor, on the program Living With Cancer said you can't do chemo forever. In my opinion, at some point I will have to accept my cancer in the stage that it's currently in, discontinue chemo, and hope that it doesn't spread or increase. I think I could be at that point now. I really need to be happy again. I am at the point where a happier, healthier-feeling life is so important to me that I may have to face the possibility of having fewer days. I have had too many "I can't do this any more" moments over the past several weeks. The frustrating thing is that the only way to get a better life for myself is to put my health at risk.

I'm sure that if I were wearing somebody else's shoes, and that I was the friend or family member of a cancer patient, that I would want (and expect) him or her to fight to the very end. Things are drastically different from this side of the fence. I believe some people are going to be able to understand how I feel while others may not. I know that I don't have to prove to people that I have put so much into this fight. My journal says it all. Although I was kind of curious for myself so I went through my calendar over the past twenty months. This is what I have done to battle this insidious cancer:
(1) major surgery
(4) emergency hospital visits
(21) radiation treatments
(18) chemo treatments
(114) cancer-related medical appointments
When I toss around these numbers it makes me realize how expensive of a burden I have been to the health-care system. Thank goodness for good health insurance.

Next test/results
My next PET scan is Monday, May 14 with results on Monday 21 during my next oncology appointment. I am scheduled for chemo on that day too. That will be a big day for me regardless of what the results will be. I have a HUGE decision to make. I may change my strategy once I get my test results. But I may not.

I don't want to hear from people that I should reevaluate my decision. I need to make this decision on my own and I don't need somebody telling me that I am making a misguided decision for myself. Thank you!

2008?
Do I dare even consider putting an event on my calendar for 2008? A friend of mine is getting married next April. Yes --- I did put it on my calendar.

(Added: Monday May 21, 2007)

(Monday May 21, 07)

PET scan results
Unfortunately I did not get good news today. All regions that previously had cancer have either remained unchanged or increased in size or intensity. No areas decreased or disappeared as were the results of my last PET scan. This PET scan also shows cancer in my left first anterior rib meaning it is now going into my bones. That is very bad news as I have recently learned how painful it is to have cancer in the bone.
PET scan conclusion: Findings consistent with mild progression of metastatic disease involving the chest, abdomen, pelvis, and skeletal.

My oncologist agrees with me that we should no longer use chemotherapy as treatment. It has not proven effective for me for any substantial amount of time and the side-effects have been making my life miserable.

I may be out of treatment options at this point. My oncologist is going to find out if my medical insurance will cover a drug called Bevacizumab (brand name: Avastin). It is very expensive (of course) and has not been approved for the treatment of esophageal cancer. This drug is not a chemo and does not have the associated side-effects. It would be injected through an I.V. every three weeks. There are risks in taking this drug including serious, or in rare cases fatal, internal bleeding. Blood clotting, coughing up blood, and other serious adverse effects are possible. I will find out in the next day or two if it has been approved for me. At best this drug would slow down the inevitable and give me some more time.

My oncologist said I could expect to live four to six months. I could begin getting sick or experiencing pain in two to eight weeks. I have been down this road before but this time it really feels like the end of the road without a choice of a left or a right turn.

(Added: Friday June 8, 2007)

(Saturday May 26, 07)

Why am I painting?
A few weeks ago I repainted my bathroom walls because I was tired of the white walls. I'm not even sure why I decided to paint the walls at all since it felt like I was painting more for the person or people that were going to be moving into my townhome after I die. My intention was to paint the walls a light blue. Somehow I picked out a blue that looked horrible for the room. What was I thinking? It was a bright blue that looked very gaudy with my nice bathroom vanity and ceramic-tiled walls and floor. The blue would have been appropriate in a Caribbean-themed bathroom, but that's not what I have. I hated the look of the bathroom when I was completed with the painting. For the first few days I wondered if I could just deal with the ugly blue walls as "it wasn't going to be my problem" in a few months. The new owners would have to paint the walls a more pleasing color. But the more I looked at the walls, the more I decided that I didn't even want to live with it either. So I repainted the walls again. This time I picked out a blue that was so light that it actually looks gray. It took two solid days to repaint the bathroom but it looks so much better.

One more trip
I booked a long weekend in Las Vegas with my 9-year old niece and 13-year old nephew. We leave Friday June 15, returning Monday 18. We are going to see a David Copperfield magic show and take a helicopter ride from Las Vegas into the Grand Canyon. I booked one of the better helicopter excursions where the helicopter will descend 4,000 feet into the canyon and land next to the banks of the Colorado River. We will have a light lunch and have a short amount of time to explore and take photos. It should be a great weekend with the kids!

Memories
Most of my fondest memories as a child were family vacations. I want Bailey and Logan to have the photos and memories of me in these trips where it was just the three of us. As a reminder, since my diagnosis 20 months ago, the three of us have taken trips to Disneyworld, San Diego, and soon Las Vegas. We have also done family trips to Jamaica and a Caribbean cruise. I think it is especially important for me to travel alone with the kids so that I can spend all of the time and attention on just them, building more memories of their uncle.

General health
For the past few days I have started feeling tightness/discomfort in my chest that has me concerned. Each day I start out OK but it gets worse throughout the day. I have been taking Aleve tablets at night to help alleviate some of the discomfort. It's not at the point where I consider it pain. I am very concerned that my cancer, which seems to be very aggressive in my case, is really going to spread quickly now that I am not taking any form of treatment. I am concerned how I will feel, and how much pain I will be in three weeks from now in Las Vegas. I don't want to appear sick to the kids. I want to be able to be as physically active as possible. I won't be able to pick them up and toss them around in the pool because I just don't have the physical strength and I still have the surgery-caused hernia. The last thing I want is to aggravate my hernia resulting in surgery. I hope to be feeling well enough to take a roller-coaster ride if the kids are up to it.

I am able to tolerate food more as I get further away from my chemo treatments. There are still many times when I don't feel well after eating though. And some of those times can still be quite unpleasant but fortunately I no longer have the nausea.

(Friday June 1, 07)

Still waiting for approval (or denial)
It's been 1-1/2 weeks since my oncology appointment. I am still waiting to hear if my insurance company will cover the Avastin drug, my last possible form of treatment. I was told it usually only takes a few days to get accepted or denied. It can't be a good sign that it's taking this long to get an answer. I called my oncology nurse again who told me that the insurance company has yet to approve or deny the treatment but they would need to have a decision by Tuesday June 5. I wonder at this point if the drug would even do me any good. Is it worth any possible side-effects?

(Sunday June 3, 07)

Counting sheep ain't helping
I tried to lie down this afternoon to take a nap but my chest discomfort made it impossible. I'm still not quite ready to call it pain but it's to the point of interfering with my ability to fall asleep. I was prescribed Vicodin months ago but have not taken any until today. As many people know, Vicodin is commonly prescribed for persons experiencing pain after surgery or intense pain. It helps calm a person down and increases his or her ability to relax and forget thier pain. I decided to take one pill because the Aleve tablets weren't doing the trick anymore. Taking Vicodin makes me feel like I have entered the "pain management" phase of this disease. And that scares me. Perhaps that is why I have avoided using the word "pain".

My oncologist told me during my last appointment, when I received the dire news, that I would likely need to have fluid drained in the future. I have the feeling that fluid is building in my chest causing this pressure. I will call my oncology nurse tomorrow to see if I can get an appointment to have the fluid-draining procedure even though I know it will be a very unpleasant experience.

(Monday June 4, 07)

Unpleasant is an understatement
I spoke to my oncology nurse this morning to ask if I can get the procedure (known as Thorancentesis) to drain the liquid from my chest. I was kind of doing my own self-diagnosis as I didn't feel it was necessary to have a doctor give me an exam to determine if there was even a need for this procedure. I assume the nurse spoke with my oncologist and decided the procedure was appropriate. They were able get me an appointment early this afternoon.

So exactly what is Thoracentesis?
Thoracentesis is a procedure in which fluid is drained through a needle or tube from the space between the lining of the lungs and the chest wall. This treatment alleviates many of the symptoms and chest discomfort, but its effects are often short-lived. In many cases the procedure has to be repeated. The doctor administered a few shots that were used as an anesthetic to alleviate most of the pain of the procedure. The shots themselves were painful and the procedure was very uncomfortable. At one point I thought I was going to vomit.

The doctor saw how I was reacting to the procedure and asked several times if I was OK and if I wanted him to stop. Each time I told him that I was OK and to continue. Since the worst part was getting the tube in my body, it only made sense to continue on. He was able to complete the procedure and drained out as much fluid as possible.

The procedure today was much more painful and unpleasant then when I had it done last year. I looked at my journal entry for last September and discovered that I actually had a different procedure at that time. My memory failed me again. Thank goodness for my journal. Last September I had a needle biopsy into my chest cavity to determine if the fluid contained cancer. During that procedure, there was just a small amount of fluid extracted. They didn't actually attempt to remove excess fluid, just to obtain enough fluid for a biopsy. So that explains why I remember last years procedure not being as grueling as it was this time.

The doctor drained 1/2 liter of fluid which sounded like a lot to me. He said they often drain up to one liter but 1/2 liter was a significant amount that should definitely help reduce the pain. I saw the glass bottle of liquid on the countertop on my way out of the procedure room. The fluid looked yellowish and slightly murky but I didn't spend a lot of time looking at it. Didn't need to I guess. I was just amazed how much they extracted. No wonder I was having chest problems and heavier breathing.

(Wednesday June 6, 07)

Everybody jump into the pool
I checked the forecast for Vegas. The forecasted highs for the four days we will be in Vegas will be 104-109 degrees. We are staying at the MGM grand because it looks like they have a great pool area and a lazy river that my niece has always enjoyed. With temps over 100 degrees, I'm sure we won't be the only people in the pool area. I continue to exercise almost every day, 1/2 hour on my elliptical machine. I want to keep my leg strength up, particularly for the long walks expected in Las Vegas. I hear the hallways at the MGM Grand are a block long themselves. I will ask for a room near the elevator. I booked a rental car so we could drive to some of the hotels and attractions since, as anybody who has been to Vegas knows, the distance between the massive hotels are very deceptive. What appears to be a relatively short walk ends up being quite a hike.

I spoke with the oncology nurse again today. They still are waiting for an answer from my insurance company even though the "deadline" was yesterday.

More brief moments of sadness
Over the past few weeks I have had numerous moments of sadness resulting in brief cries. It usually stems from the thoughts of my niece and nephew, knowing that I will miss out of the joy of seeing them grow into fine adults and become the wonderful people I know they will become. That overwhelms me to tears every time so when I get those thoughts I have to try to shake it off as quickly as possible. I also get sad to think that there will be times ahead where I won't know if goodbyes to friends will be last goodbyes. I know how sad it is for my friends and family to know that they will soon be losing a friend or member of the family. It's really difficult for me to think that I will soon be losing ALL of my friends and family. I am choking up as I write these words.

I have wonderful friends and family that have been keeping me very busy lately. I have had a dinner, movie outing, or get-togethers planned nearly every day over the past several weeks. I have enjoyed these times and it helps keep my mind of the bad stuff. Some people are helping fatten me up too. I weighed in at 147 pounds tonight. I have wondered in the past if I will ever break the 150 pound barrier again. Perhaps I will. Bring on the cheeseburgers and cheesecake.

(Thursday June 7, 07)

Pill popping
I have been taking only one Vicodin per day since I started popping the pills last Sunday. Yesterday I took two. Today three. Still far below the eight per day allowed per my prescription but it does have me concerned that I'm experiencing more frequent pain. I tried doing my nightly 30-minute routine on the elliptical machine but was in too much pain. I had to stop after eight minutes. About twenty minutes later the pain subsided and I was able to complete the remaining 22 minutes.

(Friday June 8, 07)

Calling a spade a spade
Today was an unpleasant day. I woke up early to pain in my chest/back area so I got out of bed and took a Vicodin. I had some brief but intense abdominal pain during the first 1/2 hour at work so I took a second Vicodin. My prescription allows me to take one or two pills when needed. I took a third pill after lunch. I did not feel well at all this afternoon. It was a new kind of not feeling well. My friend at work told me that his wife had stomach problems when she first started taking Vicodin. I wondered if the three pills were the source of my overall unpleasantness. I hope my system gets used to Vicodin because I know I'm going to require them from here-on-out. I left work a few hours early and immediately crawled into bed. I woke up about two hours later to more back/chest pain that would not allow me to fall back asleep. I started feeling better around 6:00 PM. With the way I have felt over the past few days at times, I am ready to call my discomfort "pain".

Still no word from the insurance company
Yesterday my oncology nurse suggested that I call my health insurance company to get an update on my request for Avastin. I was told that somebody would call me. My oncologist and I are still waiting to hear from them. I will call my insurance company on Monday and put some pressure on them to get an answer.

Should be a good weekend
I'm looking forward to this weekend. Tomorrow I will go to my niece Bailey's dance recital and Sunday my sister is hosting a barbeque to celebrate my upcoming birthday. I turn 43 on Monday, June 11th.

(Added: Monday June 25, 2007)

(Monday June 11, 07)

They say it's my birthday --- and it is
My birthday gift was being approved for the new treatment drug, Avastin. I am very surprised' and so is my oncologist' since (as previously mentioned) the drug is not approved for esophageal cancer and is quite pricey. Hats off to Blue Cross Blue Shield Of Minnesota. I will get a PET scan next week that will be used as my "before" photo. The drug will be administered intravenously every three weeks. After my third treatment I will have another PET scan to see if this drug is doing any good (slowing down the growth).

(Friday June 15, 07)

Las Vegas Baby!
This morning I left for Las Vegas with my niece and nephew. Should be lots of fun!

(Tuesday June 19, 07)

Why do I book these late flights?
Another end to another great trip! Our plane from Vegas arrived in Minneapolis at 12:30 in the morning. It was 2:00 AM when my head finally hit the pillows. I am not looking forward to hearing the 6:15 alarm.

Test Results
The cancer continues to grow in some areas while remaining unchanged in others. I was definitely expecting these results. In fact, my oncologist and I expected the spread to have been greater since my cancer was so aggressive during treatment. We both expected it would just go crazy since I haven't had any form of treatment in seven weeks. There is an increase in the amount of chest fluid too.

The pressure continues
I did not feel well for several hours after landing in Vegas last week and after returning home. Most of the discomfort was from the chest pain. My oncologist thinks it is a result of the plane traveling. I'm not sure if it is from the landing/taking off of the plane or the cabin pressure. I guess I should come to expect this if I do any more airline traveling. And this means an end to the thrill ride 'Power Tower' at my local amusement. This is the ride I have mentioned before that plunges it's riders up and down nearly 250 feet at a very high speed. That would likely cause me a lot of pain. I will try the roller coasters and hope they don't cause any problems. I would not be happy if my thrill-riding days are over.

Treatment of another kind
So today was similar to chemo treatment days in the past. A blood draw, a talk with the oncologist, and an I.V. needle to administer the Avastin. Surprisingly most people do not experience side-effects with this drug. Not even nausea and fatigue. However, I did have extreme abdominal pain immediately after the treatment that lasted until 11:00 pm. I have not had ab pain this painful for a while and last for such a long time. I really don't think it's directly related to the Avastin treatment

(Wednesday June 20, 07)

New pain meds
So today I started taking 20MG tablets of Oxycontin. Oxycontin is a prescription painkiller used for moderate to high pain relief associated with injuries and pain associated with cancer. Oxycontin contains Oxycodone, the medication's active ingredient, in a timed-release tablet. For the past few weeks I have been taking one or two Vicodin tablets every three hours. My oncologist wanted me to switch over to a longer-lasting pain med that didn't require swallowing so many tablets every day. I will start off by taking one tablet in the morning and another in the evening. I was also prescribed Oxycodone that I can take to relieve pain flair-ups throughout the day. I was told that if I end up taking three or more Oxycodone tablets for these flair-ups that I may have to increase the milligrams of Oxycontin.

(Thursday June 21, 07)

The new pain meds are not doing the trick
Today is the second day using Oxycontin. I know it's early into the program but I'm not getting the pain relief I was getting from Vicodin. It's also making me extremely sleepy during the day. I told my manager at work that it is becoming too difficult to work and that I will need to return to medical leave soon. I am not sleeping well at night. I often wake up three or more times during the night. Sometimes I will take a pain med tablet if the pain is not allowing me to fall back asleep. And since I am not sleeping well, it is becoming more and more difficult to wake up at the 6:15 bell. There are times at work that I can feel really bad and wish that I was home to crawl into bed to sleep it off. I expect to go out on medical leave within two weeks. I think it would be better for my overall health, happiness, and well-being.

(Friday June 22, 07)

An unpleasant day
I had a brief meeting with my Human Resources representative to discuss short-term and long-term disability benefits. Fortunately I do qualify for both. Now I need to determine if I can afford to go out on medical leave.

I left work at noon today, shortly after vomiting. I went home and slept for six hours. I threw up two more times today. At first I thought it might be from the Oxycontin I started taking this week. Logan and Bailey each threw up several times while in Las Vegas. I think I might have picked up their stomach bug and it took a few days for it to affect me. I was extremely sick and nauseous. I started feeling much better at 11:00 PM. I don't think it was a result of my pain meds because it lasted only 12 hours and the pain meds have not made me feel sick since.

(Saturday June 23, 07)

Better but not great
Thank goodness I no longer feel nauseous. I still have constant chest pain and the pain meds are not giving me the relief I need. I am concerned that the pain is being caused by the increase in chest fluid. I know that I'm going to have more of the chest-fluid-draining procedures, but I hope that I don't need to get them too frequently. The last time I had it done was June 4. Did I tell you then how much it hurt? Just kidding --- I know I did.

On a lighter subject
Tonight I added pictures and two short videos from our Las Vegas weekend to my website: http://home.comcast.net/~markymark1964/
It was fun to go through the pictures and videos. I hope you enjoy them.

(Sunday June 24, 07)

Upping the dosage
I spoke with my oncologist last Friday because I was concerned that my pain was not being relieved with Oxycontin. She suggested that I start taking two tablets at night and if that doesn't help, to also take two in the morning. This is a doubling of my original prescription. It seemed to have helped. I am getting a few of the side-effects of Oxycontin including:
Itchy skin (no apparent rashes)
A very, very itchy nose
Slow urination. Even thought at times it feels like I really have to urinate, it can take about one minute for the urine stream to begin and I don't release as much fluid as it feels like I should.

Still managed to squeak out some good times
Although this has been a pretty horrible week for me, fortunately I have been able to sneak in some great times with friends and family. A few weeks ago I was feeling better in the mornings then getting worse as the day progressed. Lately, many of the mornings have been tough and I've been feeling better as the sky darkens. So even though I have had some painful days, I was still able to keep my social engagements.

(Monday June 25, 07)

I spoke with my oncologist today regarding the side-effects from Oxycontin. I was most concerned about the problem urinating. I want to make sure the side-effects are not going to lead into something more serious. She said I should give it a few more days to see if my body starts getting use to the new pain meds.

Walking like an old man
I find myself walking like an old man at times, particularly after being seated for more than an hour or so. I often have abdominal discomfort that makes it more comfortable to walk slightly bent forward. I'm sure people notice it when I walk. I try to walk with my back as straight as possible when people are around so that I appear less sick-looking. You might even notice it a little on the short Las Vegas video before and after crawling into the bed of pillows with the kids.

(Added: Tuesday July 3, 2007)

(Tuesday June 26, 07)

My breathing is becoming much heavier and I'm often short-of-breath. Week-by-week it seems I'm "losing ground" bit-by-bit.

Leave-of-absence (probably a bit overdue)
I told my manager that this Friday needs to be my last day of work before beginning a new medical leave-of-absence. I sincerely believe that working is taking a toll on me. I had a lot of chest pain today so I made an appointment for tomorrow for the chest-fluid-draining procedure (Thoracentesis). I also experienced an odd sensation where I could hear and feel air bubbles coming up through fluid at the top of my chest when I took deep breaths. It was a very odd feeling.

I unpacked from our Vegas trip (and finally completely unpacked from the Africa trip three months ago).

(Wednesday June 27, 07)

I started a prescription of Flomax that I hope will help my urination problem. The "breathing-gurgling" sensation continues.

So today I had my Thoracentesis procedure where 750 ML (3/4 liter) of fluid was drained. The same procedure three weeks ago yielded 500 ML. This time I did not experience much pain during the procedure but immediately following the procedure I felt nauseous and had sudden intense pain in my chest. It felt like my lung was starting to collapse (not that I would know what that would feel like). They admitted me to a hospital room for one hour where they administered oxygen and monitored my vitals. I did start feeling better about 1/2 hour later. My right chest cavity now contains fluid but not enough to have drained. That gives me something to look forward to (insert a note of sarcasm here).

One of the minor side-effects of the Avastin treatment is constipation. All I have to say about this is that "I'm overdue" so I started a stool-softener medicine. Does this really need to be in my journal? Not sure?

Lately I have experienced muscle twitching several times a day. It usually occurs while I'm lying down. This is a known side-effect of Oxycontin.

(Thursday June 28, 07)

I have pain in the left side of my chest. I wonder how close I might have come to having my lung collapse at the end of the Thoracentesis yesterday. I don't recall having this pain the day after my last Thoracentesis. Next time I have this done, I'm going to ask how often a lung collapses during or after this procedure. I know that it's one of the risks.

(Sunday July 1, 07)

Some people have reported to me that they are unable to view the videos that are posted on my Las Vegas website page. I added a note with a possible technical fix that you'll now see on the Las Vegas website under the list of pictures and videos.

A truly special birthday party
I went to my niece Bailey's 10th birthday party this afternoon. I showed our photos and videos from Las Vegas. It was fun and it really meant a lot for me to be there. Not too long ago I didn't know if I would even be alive to celebrate her birthday (her birthday is actually June 29).

(Monday July 2, 07)

Today was my first day off from work with medical leave. I woke up at 4:00 AM (not on purpose) and ate a small breakfast (since I was up). I woke up again at 7:00, exercised, and ate another small breakfast. After breakfast # 2, I crawled back into bed as I was still tired. One of the biggest problems I was having at work lately was that I would get to work and immediately be so tired that I could fall back asleep. I woke up again at 9:30 only because my phone made a noise from a Task reminder that I had previously set. It felt good to sleep in. I think my body needs more sleep than I have been giving it lately. I get very winded and short of breath doing simple things such as walking up a flight of steps. Sometimes I have to rest for a few minutes to catch my breath.

(Tuesday July 3, 07)

I called my oncology nurse today to let her know that the "breathing-gurgling" sensation is still occurring even after having the Thoracentesis done last Wednesday. She was able to get me in to see the oncologist this afternoon. My oncologist checked my breathing then ordered a CT scan of the chest to get more information as to what might be going on. My oncologist told me that I have a significant amount of fluid in my left chest cavity and some in the right as well. I was given the option to do another Thoracentesis but since the last two times were very unpleasant, I chose to do a procedure that I hope will have more lasting results.

More questions than answers
I think they will go into both of my chest cavities and place a membrane along the chest wall that may help reduce the accumulation of this fluid. All of this happened late in the day and I missed a phone call from my oncologist so I don't know the details. I don't even know if this procedure would actually be considered a surgery. I do know that there is a chance that this procedure may not even help but I don't want to have to keep going in every week for a Thoracentesis. I was told to expect to be in the hospital for three or four days. For those of you that recall my journal notes from my previous stays at Methodist Hospital in St. Louis Park Minnesota, the service is wonderful but the food is horrendous. I might be asking friends and family to sneak in real food from the outside world. I can't afford to lose any more weight while in the hospital.

My oncologist thinks the gurgling might be coming from my stomach, not my chest. Thanks to the major surgery I had in late 2005, my stomach is up much higher than 99.9% of the population and this might be the reason I can feel and hear it. I'm not sure why this just started over the past week. Who knows?

At least I have a good ticker
With all the chest pain that I have, it sometimes feels like I could be having a minor heart attack. My oncologist said my heart sounds good. One less thing to have to worry about.

More info in a day or two
I'll find out more about the procedure/surgery this Thursday morning. I'm going to start calling it surgery because they want me in the hospital for three or four days. When I think of a "procedure" I usually equate it to being released the same day. I will try to update my journal one more time with more information before I go into the hospital.

(Added: Thursday July 5, 2007)

One of the side-effects of Oxycontin is "abnormal dreams". I have had odd dreams while half awake/half asleep. This is usually while taking a nap, not during heavy overnight dreaming. I find myself conscious and alert to what is really going on around me but at the same time I'm experiencing these dreams. I did some internet searching on dreams while on Oxycontin and read about a woman with the same phenomenon of dreaming while being awake.

Here are a few of the odd things that have occurred during these dreams:
1) I was waiting for a friend, who shall go nameless (Patty), for lunch. I got to the restaurant early so I took a quick nap in my car. I had a dream where she and I were in the restaurant and one of us dropped a ketchup packet. I "woke up" from the dream while reaching down toward the floorboard of my car to pick up the ketchup packet.
2) A bottle was falling off a table in one of my dreams; I awoke in a motion of my hands trying to catch the bottle before falling to the floor.
3) Again in a dream, I was walking down a flight of stairs and misjudged the number of steps at the bottom. I woke up from the dream with my feet in the motion of walking down steps as you really would if you misjudged the number of steps.
So far I don't think any of my Oxycontin dreams have been bad dreams.

(Wednesday July 4, 07)

palpitation. A palpitation is awareness of the beating of the heart, whether it is too slow, too fast, irregular, or at its normal frequency. I often have these palpitations which I hate because it feels like the onset of a heart attack. Tonight the palpitations were bad, beating too quickly. I was also unable to sleep in the bed likely due to the fluid in my chest. I had to sleep in a non-reclining chair. All of this combined with chest pain and taking more Oxycontin later at night than I usually do, I had this brief, slightly scary feeling that I could die overnight.

So what is Pleurodesis?
The procedure that I will be having is called Pleurodesis (pronounced ploo-ro-DEE-sis).
It is quite common for fluid to collect when cancer affects the lungs, causing breathlessness. Fluid can gather between the sheets of tissue covering of the outside of the lung and lining the chest cavity. These sheets of tissue are called the pleura. The fluid stops the lung from fully expanding when you breathe. So as it builds up, the collected fluid will cause shortness of breath.

Pleurodesis is a treatment to stop this fluid from building up and help relieve the symptoms. It seals the space between pleura with sterile talc (powder). The idea is to put in something that will irritate the pleura. This makes them stick together. Then there is no space in which the fluid can collect. I will have to stay in hospital for several nights because there is a lot of fluid to drain.

This treatment does not treat the cancer but can be very useful for relieving difficult symptoms such as breathlessness. It should be easier to breathe after this treatment.

The doctor first gives you a small injection of local anesthetic. The doctor then inserts a tube (cannula) with a sharp pointed needle attached which allows puncturing of the chest. The tip of the needle goes into the space where the fluid is collecting. This is attached to a drainage tube called a chest drain and a collecting canister. The doctor will put a stitch (called a purse string suture) around the tube to hold it in place.

If there is fluid on your chest, your doctor will want to drain it off first. As long as the drainage canister is kept lower than your chest, this will happen automatically. If there is a lot of fluid, draining it can take a while. In my case, it drained slowly overnight. It has to drain at a slow rate because draining off a large amount of fluid too quickly can make your blood pressure drop suddenly and may feel faint.

Once the fluid has stopped draining, the doctor injects the talc into the pleural space through the drain. The drain is clamped and left for over an hour. During that time, I was asked to lie in different positions on my bed – on one side, my back, then the other side. This is to help the talc circulate between the pleura. The aim of putting in the talc is to irritate and inflame the pleura

After all this, the doctor or nurse will remove the drain tube and pull the stitch tight to close the small opening in your chest wall.

(Added: Saturday July 7, 2007)

(Thursday July 5, 07)

I checked into Methodist Hospital and had the draining tube installed. I was administered Morphine through an I.V. tube with a button that I could push every 15 minutes for an extra does of Morphine if needed. The procedure was a bit painful and again I felt nauseous afterwards.

(Friday July 6, 07)

The doctor injected the talc into the pleural space. This second part of the procedure was very uneventful. It took about two minutes and there was no pain involved. However I was very nauseous after it was done. I am pretty sure the Morphine was causing the nausea so I asked the nurse to cut the continuous flow dosage by half. I felt soooooo horrible today. I couldn't eat anything, not even the food I brought in from the outside world. I didn't even try to eat the hospital food. I probably woke up every 20-30 minutes overnight.

(Saturday July 7, 07)

Very disappointing
I found out today that the Pleurodesis procedure didn't work because a lot of liquid is still draining from my chest. I was very disappointed that going through all of this didn't help. I was told by the doctor that it is successful in 50-75% of the time. I can't catch a break, can I? I will likely have to return to the Thoracentesis procedure. And I'm concerned that I may need to have this done weekly. We'll see. There is a true surgery option where the surgeon goes into the chest and manually irritates the lining of the lung. Evidently it's 99% effective but I don't think my body and I can endure a surgery and the estimated three days in the hospital.

I got home from the hospital at 1:00 pm today. I was completely "out of it". Hiccups are painful and I still get winded quite easily. It took all of my strength just to speak to people today so I will have to return phone messages tomorrow. I hope things are better tomorrow. I lost three pounds over the past three days.

(Added: Thursday July 12, 2007)

(Monday July 9, 07)

I cut back on the Oxycontin from 40 MG to 20 MG in the morning to see if it helps me feel a little bit better. Hopefully, I don't feel more pain as a result of this test. I will continue to take 40 MG at night so I can get a more restful night.

(Tuesday July 10, 07)

Irony
I am really starting to get concerned about not feeling well most of the time. I was hoping today was the day that I would start to feel better, as I get further away from my hospital stay. I hate to think about my own timeline but these thoughts frequently cross my mind. I am confident that I will see the end of August but I'm less confident about September. Ironic, isn't it? My appetite is down quite a bit. This is not a good thing. Food has been tasty very salty over the past several days. I wonder why?

(Wednesday Jul 11, 07)

I couldn't sleep at all last night
I tried sleeping in my bed but putting any pressure on my back causes too much pain. I took a pain and sleeping pill then tried sleeping in my leather, non-reclining, chair. I managed to get a little sleep (1 to 1-1/2 hours) but I had poor support for my neck and woke up with a sore neck. I took another pain and sleeping pill then crawled into bed once again. Again, I probably slept another 1 to 1-1/2 hours. It was an awful, frustrating attempt to get any sleep. I think I waited one too many days to get my chest drained again even though I was just drained last Thursday and Friday.

Some good after all (?)
I scheduled myself a Thoracentesis for today. Last week, at the hospital, a doctor called this process a "tapping" so that's what I'm going to call it from now on. Besides it's easier to spell. They use ultrasound to look for the best place to tap me to get as much fluid as possible. The doctor said there was not enough fluid to tap me. There is a risk of a collapsed lung if there isn't enough fluid. The doctor said the pain that I am experiencing might be from the Pleurodesis procedure last week in the hospital. He said it is a very painful experience and it might take a week or two for the pain to go away. I told him that they told me in the hospital that the procedure didn't work for me because too much fluid drained the day after inserting the talc powder. He said that one day was too early to know if the procedure was beneficial. I am hoping that the procedure did help and it this pain that I currently have will go away in a few days. If it did help after all, that might explain why there wasn't very much fluid in my chest cavities today. I was really expecting them to extract a record amount for me with the way I felt last night. So I didn't get tapped and we'll wait until next week to see how I feel. I really, really hope the Pleurodesis procedure did some good after all.

Afraid of the night
Will I get any sleep tonight?

(Thursday Jul 12, 07)

Propped up by pillows
I think I might have found a better way to sleep on my bed. I took two fairly firm pillows and separated them by 6", lining them up along both sides of my chest, just below the shoulder bone. This allowed much of my body weight to be lifted off the bed with less direct contact of my back to the feather-top mattress.

I need some fake energy
I am sleepy far too often so I started drinking Red Bull energy drinks today. I don't know how many I will drink per day, maybe two or three. We'll see if that helps.

Bye-Bye games
I contacted a liquidating company to see if they would purchase the remaining inventory of my games so that I can close out my home-based game business. I am waiting for a reply.

Oncology appt
My oncologist was pleased to hear that the fluid in my chest is not accumulating at the pace it had been over the past month or so. She said my breathing sounded pretty good today. She could tell there was some liquid in there, but not much. She thinks the Pleurodesis treatment in the hospital may have helped too. I told her that I was feeling better than I was a few days ago. I asked her how much pain medication is too much. I am taking a relatively low dosage so I'm going to up the daily dosage again. I think I was taking less than I could because it seemed to make me sleepy. My oncologist said that my body will get used to it and to take more pain meds if needed. My cousin told me that Ibuprofen can help relieve the pain from cancer once it has spread into the bones. I asked my oncologist about this and she agreed. She said I could use Ibuprofen in place of the 5 MG Oxycodone tablets I have been using to relieve pain flair-ups. I will continue to take 40 MB of Oxycontin in the morning and evening. Hopefully I won't be so tired during the day. I also asked her about the muscle twitching that I occasionally get, usually while relaxing. She said that I might be low on electrolytes so I will start drinking more sport drinks such as Gatorade.

Treatment # 2
I had my second of three Avastin treatments today. The first treatment lasted 1-1/2 hours, today's lasted one hour, and my third treatment (three weeks from now) will only take 1/2 hour. It seems my veins are getting weaker. The nurses used to always get the I.V. needle in with their first attempt. Lately it's been taking them two or three pokes. I did not get any nausea from this treatment but I was completely wiped-out and had too much overall pain. I didn't take enough pain meds today.

My Last Will & Testament
In 2002, long before all of this fun and excitement began, I had a lawyer draw up my Will. I made an appointment to see him tomorrow to make some minor changes to the Will. It will be a relief to complete this as it was one of those "bigger" things toward the top of my to-do list.

(Added: Friday July 20, 2007)

Am I repeating myself, repeating myself?
I do not go back to read what I have previously written in my journal so occasionally, as I'm typing away, I get the feeling that I have already covered a topic or shared a specific thought or emotion. I hope I don't do this too often. My apologies if I do.

(Friday Jul 13, 07)

I didn't sleep well at all last night. Here I am repeating myself already. This morning I went to a lawyer to discuss my Personal Will. I nearly drifted off to sleep the entire time I was in his office. I had to apologize for my rude behavior after our meeting.

As a result of not sleeping well last night, I slept most of the afternoon away. If I disregard the sleep deprivation for a few minutes, today is the best I have felt in several weeks. I feel very little pain. I actually called my sisters just to let them know that I had a good day. My brother was out of town otherwise I would have called him too. They usually hear that I'm not feeling well so I thought they deserved a phone call to let them know that I was actually feeling well for a change.

(Sunday Jul 15, 07)

Vehicle camping
I have felt well over the past few days. My appetite is strong again and I am sleeping better. My pain is under control and I had a fun weekend. I actually went camping (sort of) with friends. I decided that it wasn't worth setting up a tent so I inflated an air mattress in the back of my Toyota RAV4 and slept in my truck. Besides, I wouldn't have had enough physical strength to setup the tent myself so I would have had to recruit my friends to do the work. The Flomax prescription was working its magic so I woke up four times to urinate. It was inconvenient to have to crawl out of the back of a truck and walk to the restroom in the dark of night. A flashlight in hand helped guide me the short walk. I woke up once and started feeling a bit claustrophobic so I opened the window next to me, just an inch or two, so that I could feel the fresh air. That helped calm me down and ease my anxiety. I forgot to pack my Ativan which helps me sleep so I was concerned that I was not going to be able to fall asleep. I wondered a few times if it was a good idea (health-wise or for my back) to be sleeping in a truck. I knew that I would be far more comfortable at home but sometimes I feel like I need to push myself a little bit. I don't want this disease stopping me from doing everything.

Several times I recall putting events on my calendar and thinking to myself that there is a good chance that I won't be feeling well enough or perhaps even be alive to do these things. This camping weekend is one of those events. I am so happy that many of these planned events are coming and going.

I gained 3-1/2 pounds this week. But I'm still far too skinny at 138 pounds.

(Monday Jul 16, 07)

Minor Panic Attack
At least two times today I had minor panic attacks during episodes of being short of breath. At least once during the day and once tonight while lying down to sleep. As I've mentioned before, I can get winded so easily. Mentally I was afraid that I was not getting enough air into my system even though at the same time I could convince myself that physically I was getting enough air. It was a scary couple of minutes. I had to try to calm myself down. It scares me to think that this will happen more often as my breathing deteriorates over time. And it reminds me of the moment my mother passed away from breast cancer when I was 16 years old. I saw her grasping desperately for her next breath until she took her last. It was a horrible thing to witness.

Fortune cookie fortune from tonight's meal: "Good health will by yours for a long time."

(Wednesday Jul 18, 07)

A night out at the clubs
I met up with two friends tonight at a club with live music. The music was so loud that it was difficult for me to speak to my friend sitting directly next to me. I was getting winded mustering up enough energy to speak loudly. I sometimes get winded just speaking to somebody over the phone so trying to carry a conversation in this club was too difficult. Also the heavy beat of the music was giving me heart palpitations, similar to the ones I was getting as side-effects from the early days of taking Oxycontin. I was physically uncomfortable in the club so I was only there for about ten minutes.

(Friday Jul 20, 07)

Tap, tap
I am scheduled for a tapping this afternoon. They will first do an ultrasound on my chest to see if there is enough fluid to drain. A significant amount of fluid might be the cause of my pain while sleeping. If there is not enough fluid to drain, my oncologist said we should start looking deeper into what could be causing this pain.

A typical day
I wake up around 7:30 AM (never feeling rested), exercise for 1/2 hour on the elliptical machine, eat breakfast, and then crawl back into bed because I'm still very exhausted from the previous night's rest. I'll reawake around 9:30 AM and many days I will take an afternoon nap.

I don't know if it's the pain meds that I am on but I find myself not as "sharp" or focused as I used to be. Occasionally I find myself unable to finish my thoughts or sentences. I have nodded off many times while typing on my computer. I am still sleeping during the day more than I wish but I don't feel it's healthy to deny my body of sleep when it's asking for it. So I give in and nap, nap, nap.

(Added: Thursday August 2, 2007)

(Friday Jul 20, 07)

Tap, Tap, nobody's there
Again there wasn't enough fluid to drain on left side to do a tapping. The doctor said he would be happy to remove about 200 CCs from the right chest area but it's not a significant amount and probably not worth doing the procedure. He said it is unlikely to help that much with my breathing or sleeping problems. 200 CCs is a little more than 6 ounces. That compares to 500 CCs and 750 CCs drained during my first two tappings. I am very pleased that the talc powder procedure that was done three weeks ago in the hospital seems to have helped slow down the production of chest fluid.

(Thursday Aug 2, 07)

Today I had my third of three treatments of Avastin.

Oncology appointment
I also had an appointment with my oncologist. She said my breathing is good and it doesn't sound like there is very much fluid in my chest. This is a good thing

My oncologist told me that I should not be working. And I completely agree. I do not have the energy and am too fatigued throughout much of the day. My oncologist will be extending my medical leave for an undetermined amount of time.

I told her how much sleep I have been requiring lately. She said this is very typical because there are three things that are causing my fatigue:
• the cancer itself
• I am anemic. This is a decreased number of red blood cells or less than the normal quantity of hemoglobin in the blood. The oxygen-carrying capacity of the blood is, therefore, decreased.
• my pain med, Oxycontin, causes fatigue

I need to find a new way to sleep
I still wake up several times during the evening and usually wake up with back pain. The meds I take in the morning usually diminishes the pain within an hour or two. I asked my oncologist if I would qualify for a hospital reclining bed to be delivered to my home. She agreed that it might help so she wrote up an "approval" order. I called my health insurance provider to make sure they would cover the bed rental. They will. One of the requirements for approval is that my sleeping position requires an angle greater than 30 degrees. I expect that an angle of about 45 degrees will be comfortable and will put less pressure on my back, hopefully resulting in a better nights sleep. I will go shopping next week at medical supply companies to look for a suitable bed.

Is it doing any good?
I am now scheduled for a PET scan August 16. I have an appointment with my oncologist August 21. It is then that I will find out if the Avastin treatment is doing any good.

(Added: Thursday August 9, 2007)

I forgot to mention in my last journal that last week that my siblings got together to go through old family photos, albums, cassette tapes, greeting cards, slides, and 8 MM film. I had been storing all of these items in about six large plastic storage containers. We sorted the items so that each sibling received the items pertaining to them. My sister Lisa kept the mementos and photos of our mother and father. It was an enjoyable evening. To set the mood, we prepared food that our parents would often make for us during our growing-up years. My dad was a great soup-maker. We made chicken soup with large Biscuit dumplings, one of our father's masterpieces. My sister Becky actually made the soup and it was delicious. I made the dumplings. Although they started out looking large and fluffy, like dad's, by the time we sat down and ate the soup the dumplings turned into a dense dough. I think we let it cook for too long. Oh well. My mother was not known for turning out culinary delights. She would usually prepare us good, simple meals. One of them being chipped corned beef on bread. So we made that in addition to the soup. It was obviously very simple to make so that turned out well, like mom use to make. It's a bland food item but it hit the spot.

I also presented my niece and nephew with I have been calling a "memories" frame. It's a large custom, double matted frame that holds eight 5x7 photos. I placed photos of times together and vacations that we went on since I was diagnosed. I am really please with how it turned out. I think they liked the frame and I know it will mean more and more to them as they get older.

(Saturday Aug 4, 07)

I finished my Health Care Directive, a form to control my own medical care by consenting to or refusing medical treatment if I should ever become unable to communicate my preferences. Basically it says that I do not want medical treatment if I am no longer able to socially relate to those I care about, have little or no chance of doing everyday activities that I enjoy, or if I occur severe or permanent brain injury. I do not want medical care or nutrition support if my health condition is more likely to worsen. It states that I am not able to donate my organs, tissues, or other body parts because of my cancer and that I am to be cremated after my death, not before.

I went to Wisconsin with the intention of spending the night at my sister's camper. I was so exhausted. I tried sleeping on the way up there (I wasn't driving). I tried taking a nap while everyone else went on a boat ride. I wasn't able to sleep because of the back pain I get while trying to rest on a bed that is completely horizontal. I decided not to spend the night as I didn't think I would sleep well. My brother drove us home late that same night. I tried sleeping on the way home too. I think I tried sleeping the whole day away. I might have just been exhausted from a busy week of doing stuff.

(Sunday Aug 5, 07)

Because of my exhaustion yesterday, I thought I would try a little test to see if I would get less fatigued if I didn't take any Oxycontin pain meds. Instead, I took about eight over-the-counter Ibuprofen tablets. I felt OK, not too much pain, but I was still very tired throughout most of the day. I may try to go a few more days without Oxycontin to see how it goes.

(Monday Aug 6, 07)

I am still completely exhausted. I had a really full schedule last week and wonder if that is why I was so exhausted over the past 2-1/2 days. I finally felt back to "normal" this evening. I could not find the energy to get out of bed yet I couldn't get comfortable enough to nap in my bed, couch, or chair. I was getting so frustrated. Along with my fatigue I started to allow sad thoughts to enter. I had a couple emotional break downs today. It's been a while since I've broken down like that.

I returned to my regular schedule of Oxycontin for pain management. I was experiencing pain throughout the day and the Ibuprofen alone was not effective. I also had severe, self-induced diarrhea. Yesterday I had a very nice dinner at a friend's home. I ate slightly more than I probably should have but was OK. Then I made the mistake of eating a lot of junk food from the moment I got home until the moment I went to bed. I couldn't stop myself from eating. And I wasn't even hungry. I really need to eat smarter and more carefully.

(Tuesday Aug 7, 07)

At last... a better nights sleep
The hospital bed was delivered today. I moved a file cabinet from my hallway next to my bed so that I could set my alarm clock and cell phone charger on it. The cabinet originally held a silk floral arrangement. I moved the flowers into the bedroom, next to the hospital bed. It really made my bedroom look like a patient's room in a hospital. I don't want to wake up every morning and feel like I'm in a hospital. The floral arrangement will stay out in the hallway, thank you. With the new bed, I am now able to control the angle of my feet and back.

(Wednesday Aug 8, 07)

I went shopping for new sheets and pillow supports to keep my head from resting too much to the left or right. I did have a slight sore neck this morning. As I mentioned earlier in my journal, I had to purchase two 3" thick feather pillow-top mattresses for my standard king size bed. The hospital bed is a narrow twin size, not what I'm used to. I took the two pillow-top mattresses, folded them each in half, and stacked them on my hospital bed. So now I have nearly one foot of cushion on top of the bed mattress. I am sleeping better now, thank goodness.

The battle of the bulge, trying to get one that is
I am currently weighing in at 137 pounds. I just can't seem to gain any weight.

I'm heading up to northern Minnesota this weekend with friends. We will be going to the International Wolf Center in Ely, MN and the Vince Shute Wildlife Sanctuary to view black bears. It should be a wild weekend.

(Added: Tuesday August 21, 2007)

(Thursday Aug 9, 07)

Bye-bye game biz
I accepted an offer from a local liquidating company for the remaining inventory of my games from my game business. I didn't get a whole lot of money for them but I didn't expect to. Liquidating companies purchase excess inventories or discontinued items from companies. As soon as I get paid for the games I will be able to close out my game business company and that will give me one less thing to have to worry about. And I will be able to save a little money as I won't have to pay for current expenses such warehousing the games, hosting my game biz website, monthly fee for being a credit card merchant, etc.

I can't believe it's August
I find myself pleasantly surprised every once in a while when I purchase an item that I didn't expect I would need to purchase again. For example: I specifically remember the last time I purchased dryer softener sheets, thinking there is a good chance that it would be my last box I would ever buy. Well I am glad to say I recently had to purchase a box of softener sheets. "I can't believe it is August" is what most people say in reaction to the nearing of summer's end. To me it means, I can't believe it is August and I'm still here. It's wonderful !!!

(Sunday Aug 12, 07)

Up Nort'
I had such a great time in Ely MN with my friends. The weather was great. I felt very well Friday and (most of) Saturday. We watched the great clear, northern skies. We saw three falling stars and a meteor as part of Perseid meteor shower over this past weekend.

I did not sleep well at all last night. My friend drove from Ely to his home in central Minnesota. I threw up several times that day. I could not get comfortable enough in the car to get any sleep. I was miserable. I had a big decision to make, whether to drive from my friend's house in Central Minnesota to my home or spend the night at their house and drive home the following morning. I was apprehensive but decided to drive home. My friend was very generous to offer to drive me home too but I thought I would try it on my own, but play it safe. I took three naps along the way. Two at wayside rests and one a Volvo truck auto lot. I really wanted to be home, sleeping in my own bed, the hospital bed. And I had Zofran tablets, the anti-nausea meds I took during chemo, waiting for me at home. I didn't think I would be able to get any sleep at my friends house with the way I was feeling. I now keep Zofran in my car should I get nauseous again. I hadn't needed them for such a long time.

(Tuesday Aug 14, 07)

The Bridge
I walked the length of the Stone Arch Bridge, up-river a bit from the 35W collapse. I needed to use the binoculars I brought to get a good view of the devastation. I did see three smashed cars covered under tarp getting towed away on flatbed trucks. 25 vehicles were removed from the site today. The first few days following the collapse I decided that I did not need to see the actual devastation up close. The event was too sad. I really don't need to invite sadness into my life which is the reason I don't watch the local news any more. The local news is usually sad story after sad story. Today I slept in until noon. That's late for even me. I decided that I needed to get out of the house and do some walking. I decided to walk over to the Stone Arch Bridge and look at the bridge collapse after all. There wasn't a lot to see from this vantage point but it was enough for me. I continued on with my walk trying not to think about the loss that took place downstream.

(Thursday Aug 16, 07)

I had my PET Scan today.

Newly discovered website about EC
http://www.fightec.org - Esophageal Cancer Education Foundation was formed by Mr. and Mrs. Bart Frazzitta with 2 initial goals in mind: the first to educate people who have been diagnosed with esophageal cancer; the second to raise awareness of the disease to the general public and practicing physicians in order to promote testing and early diagnosis of this disease.

In addition, Bart Frazzitta, founder of the ECEF authored a book with the medical staff at Memorial Sloan-Kettering Cancer Center called "100 Questions and Answers About Esophageal Cancer". This book published by Jones and Bartlett can be purchased at your local bookstore or through this web site.

I have not spent a lot of time on this website and I have not read the book. I just wanted to bring it to the attention of those reading my journal that may have a friend or family member going through this awful disease. Hopefully there is some helpful information on the website or in the book.

(Monday Aug 20, 07)

The good and the bad
I've had some good and some bad days lately. My stomach has been more sensitive lately resulting in lower food intakes. That has been frustrating. I am going to ask my oncologist tomorrow if there is anything I can do try to reduce the frequency of this problem. I am still exhausted for much of the day. I am going to ask her if I can take Flomax (for urine flow) every other day, rather than daily, since drowsiness is a known side-effect. I am also going to ask her what I can do/take to improve my energy level.

Another big test result tomorrow
It makes me nervous that I have not been feeling as well over the past week since I will be getting the results of last weeks PET scan. Of course I fear that it means the cancer could be spreading.

(Tuesday Aug 21, 07)

An odd morning... should I take this as signs for my PET scan results?
• I am usually very good about time management. Last night I set the alarm for a time that I thought would give me enough time to get ready and to get to my morning appointment. I jumped on the elliptical machine, as I usually do in the morning, for my 1/2 hour workout. Twenty minutes into it I realized that I barely had time to eat let alone take a shower. I ate a very quick breakfast but did not have time to shower or shave.
• My high-speed internet was not working this morning.
• My cable television was not working either. I woke up several times last night and I did hear heavy rain but I'm not aware of a severe storm that might have taken out these services.
• After starting a load of clothes in my washing machine, the water starting gushing into my laundry room. I soaked up as much water as I could before leaving for my appointment (for which I was already running late).
• The local police were closing down both sides of my nearby streets for parking. On my way home after the appointment, they had signs up for "closed for through traffic". I'm not sure what the police activity is all about yet.

Test results
Despite having an unusual morning, I received fairly good news today. My cancer is "generally" not increasing. The notes from the company that does the PET scan states that the right-sided pleural effusion (excess fluid that accumulates in the pleural cavity, the fluid-filled space that surrounds the lungs) appears to have increased in amount whereas the left side appears to have diminished. My oncologist said that basically the cancer is not increasing and in my case, with the aggressiveness of my cancer, that she considers this treatment with Avastin a success. There are not any new cancer hot-spots to be concerned about.

I do have more liquid in my chest and belly. However my breathing is good so I will not drain the chest fluid at this time. The fluid in my belly might be the cause of my stomach problems but there isn't enough there to drain due to risks involved with removing the fluid.

I asked my oncologist if I should ever expect the possibility of this drug to actually shrink my cancer. Her answer was that we are in unchartered territory. Potentially yes, but realistically I think we both will have to accept that this drug will, at best, continue to stabilize my cancer and give me some more time. I am pleased with the test results. Usually I go into these "results" appointments with an idea of expecting to hear good or bad news. This time I really didn't have a hunch which way it would go.

I decided to continue this drug as my treatment. I had treatment today and will repeat the same plan with treatment every three weeks followed by yet another PET scan around the end of October.

(Added: Monday September 3, 2007)

(Wednesday Aug 22, 07)

Today was my first full day after treatment. It was marked with shoulder pain, sensitive stomach, and extremely fatigue all day. I didn't have the energy or desire to return e-mails or voice mails.

Again I don't feel like I properly conveyed my honest reaction to my last PET scan results. I remember being in a hurry to finish and publish my journal so that I could take a nap. This will better explain my true reaction:
• I am not pleased that the test results did not show the cancer is shrinking.
• I am not pleased that the test results show that I still have stage four cancer. This is why it is difficult for me to be truly happy about the test results. I would like you to really think about this for a moment. Would you be happy to get a test result stating that you still have stage four cancer?
• With that being said; I am pleased that the test results show the cancer is not increasing.

Most things have a good explanation
If you recall, several odd things occurred before I left for my appointment to get my PET scan results. The police activity and road closures were in preparation of ABC's filming of an episode of Extreme Makeover Home Edition taking place two blocks from my home. The episode will air November 25.

My washing machine gushed out water: I was washing a king-size pillow that fully soaked with water, overloading the machine. Fortunately I didn't have to call out the Maytag repairman. I just had to manually squeeze out enough water from the pillow for the machine to continue with the spin cycle. And with these wimpy arms, that wasn't as easy as it should have been.

(Sunday Aug 26, 07)

This has been a very unpleasant week. I need to resolve the following three problems as soon as possible to have a decent quality of life:
I need to get rid of my shoulder pain, particularly of the left shoulder. I need to determine if I should be exercising or if I'm not sleeping correctly. I think I had my hospital bed to cushiony-soft and my shoulders were being forced inward, toward my chest. Tonight I moved back into my conventional king-size bed, modified to make it more hospital-bed like. I placed metal baskets under the head of the mattress. I fashioned a foam cushion the width of my body so that it would soften my back yet allow my shoulders to rest flat. We'll see if that helps.

I need to take anti-nausea medicines immediately after doing further treatments. If my memory serves me correctly (and knowing me --- that in itself is questionable) I did not require the anti-nausea meds for the first three treatments which makes me VERY concerned that I am going to have a difficult time tolerating Avastin from here on out. I'm afraid that I may become unwilling to continue with this treatment if it makes my life miserable. I began taking Zofran, the "Cadillac" of anti-nausea meds, a few days after treatment but I still felt horrible for several more days. Hopefully next time I will feel better if I keep on top of the nausea immediately after receiving treatment.
I need to gain weight. I need to start eating smarter. Lately I have just been eating as much food as my body will allow. Some of it would be "junk" food, some of it health food such as fruits and vegetables. I pulled out an old brochure that I received early into my diagnosis that explains how to gain weight while going through chemotherapy. I was unable to tolerate much of the food it recommended while going through chemo. Now that I can eat most foods, perhaps I will have better results following their suggestions. I wonder if my skinny frame, as the result of my weight loss, is the reason for my shoulder pain.

As I mentioned, this past week was miserable. I slept a lot. I was unmotivated. My shoulders were causing almost constant pain. Occasionally my breathing would be heavy or forced and that always scares me a little when that occurs. I'm sure I had bouts of mild depression this week. I was out-of-touch with friends and family and that really upsets me. I apologize to my friends and family for being so distant when I don't feel well.

I gotta get out of my house
I did get out of the house at least four times this week to see the progress of the home building for the Extreme Makeover Home Edition program. I'm not the type to go Hollywood crazy but it was fun to see Ty Pennington film segments of the show. And Michael Moloney, one of the designers on the show, was out with the crowd signing autographs and taking pictures with fans. Michael had the honor of shaking my hand (just kidding).

(Monday Aug 27, 07)

Today I started feeling a little bit better. I did sleep over twelve hours, until noon. Then tonight I felt horrible again. It was nice while it lasted (I guess). I drank 100% fruit juice during dinner tonight. It's been about two months since I have consumed juice. I have been drinking a lot of Gatorade lately. I assume the juice might be the source of my misery so I will stop drinking 100% fruit juice for a while.

Eventually I'll get it right
I know that I have tried at least 100 combinations (literally) of bed adjustments trying to come up with one that is comfortable and doesn't result in shoulder, chest, or back pain in the morning. I have tried several types of pillows, placed these pillows at various pressure points under my back and between my many layers of feather-tops and sleeping bags. I tried the hospital bed of course. I have cut and modified plastic items, such as storage container lids, to make my own supports. I have tried many angles of the head-end of the mattress. Even a slight adjustment of a mattress angle or location of the support pillow can make a huge difference as to how I feel the next morning.

Even the walking-dead must shop
This afternoon I purchased a new pillow, not for my head but rather for back support. I took it out for a test ride during my afternoon nap. It was good but I think the other pillow that I considered purchasing might work out better. I was physically exhausted tonight. It was difficult to muster up energy to return to the store but it's so important to get a night of good sleep that I had to do it. Not only was I tired, I was also feeling horrible. I went into the store feeling like the walking dead. Usually I try my best to look as "feeling-well" as possible when I'm in public places. Tonight I didn't even try. With the way I was feeling I don't think there was much I could have done to fool anyone. I tried not to make eye contact with others but I know that I was getting some glances. How could I expect anyone not to look at the walking dead at Bed, Bath, and Beyond on a Monday evening?

(Tuesday Aug 28, 07)

"move that bus"
I woke up feeling pretty good. I walked over to see the filming of the "move that bus" scene of Extreme Makeover Home Edition. I waited about two hours before the family returned from their Disney vacation. I had to sit down for about 15 minutes while waiting. It was raining by the time the family appeared. I left the scene a few minutes after the new home was revealed to the family because I was physically exhausted. I would have preferred to watch more of the filming but I had to get home and rest.

The two or three block walk home was exhausting. I could not believe how fatigued I was. I was frustrated that I am at the point of being unable to stand for two hours and walk a short distance. I am afraid that I will never have enough energy to take another trip. It's amazing how little physical strength I currently have. It is now one week since treatment. I hope that I can soon regain some of the strength and endurance that I lost this past week.

I did enjoy watching the filming of the show. I did get emotional when I saw Ty Pennington comfort one of the family's young girls as she was very emotional even before her new home was revealed. I think it will be a tear-jerker scene on the show. But then again, I'm not sure if the cameras were rolling when this was taking place.

(Wednesday Aug 29, 07)

I purchased three long-sleeve shirts today. To be honest; early into 2007 I didn't think I would be alive this September therefore not having a need to purchase any more long-sleeve shirts. Last year I gave away all but two or three long-sleeve shirts because they were far too large for me. It's starting to get a bit cooler around here at night. Summer is nearing its end. I was tired of wearing these two shirts again and again. I used to wear a size Large, mainly because I needed the sleeve length. In a perfect world, pre-diagnosis, I would have worn a Large for the sleeve length and a Medium for the amount of material around the waist and chest. Today I purchased Small. It fits me well around the waist and chest but the sleeve length is too short. Oh well. It's better than having too much material around my waist which makes me look way too skinny for the shirt.

(Thursday Aug 30, 07)

Gotta break old habits
Today I woke up at 10:00 and ate breakfast. Now that I'm feeling a little better I need to try to break the habit of crawling back into bed after breakfast and waking up at noon. Even though I was a little tired I resisted and did household chores and ate lunch before taking my afternoon nap. I think I will usually need my afternoon nap. I feel my best between 9:00 PM and midnight. These later hours give me a chance to catch up on e-mail, surf the internet, watch a comedy show on television, or get some light tasks done around the home.

Stick around if you don't like the weather
In Minnesota it is often said that if you don't like the weather, stick around, for it will soon change. With me, I don't know how I will feel from one hour to the next. I hate this. It makes it difficult to plan anything. I just don't understand why my wellness and pain level changes so frequently. I have continuing pain in my left shoulder that is starting to concern me. I cannot get rid of the pain. The pain-meds and Aleve are not helping. It feels like a very sore muscle after overextending it from exercising but this is more intense. I will contact my doctor if this pain does not get better in a few days.

(Friday Aug 31, 07)

I really need this next round of treatment to go MUCH better than the last. I need to feel a lot better. If I feel like this again after my next round, I'm not sure that I will want to do the third and final round of this course.

(Sunday Sept 2, 07)

I decided on my own to take more Oxycontin tablets per day than was prescribed to me. I am very tired of the constant pain. I will also take two Zofran tablets per day for anti-nausea to see if it helps me feel better overall. I will contact my oncologist Tuesday to make sure she is OK with these changes or see if she has a better idea to make my life more pleasant.

(Monday Sept 3, 07)

My next oncology appointment is Tuesday September 11. I am also scheduled that day for my second round of drug treatment. I cannot believe that tomorrow will be two weeks from my last treatment and how poorly I still feel at times. I am very concerned how I will feel after my next treatment. Hopefully my oncologist and I will come up with a post-treatment plan that will work for me. I am very close to making the very tough decision again to stop treatment as I did with chemo. I think that I will be able to convince myself to take the second round of treatment and hope that it goes much, much better.

Many thanks go out to my leather chair
I often feel my best sitting on my cool (as in temperature) leather chair watching television or movies. I have found that at times when I'm not feeling well to take some time out on the chair and just wait until I feel better.

I am sorry that it took two weeks for me to update my journal. Hopefully it won't happen again. Thank you for your patience and following my journey into another September.

(Added: Tuesday September 11, 2007)

(Tuesday Sept 4, 07)

I spoke with my oncologist today. We are going to up my Oxycontin from 40MG three times per day (was twice) with the option to up it to 60MG three times per day if I don't feel my pain is under control. I will also take three Zofran anti-nausea tablets per day. She suggested we tackle the problem with my almost constant upset stomach after we get the pain under control.

(Wednesday Sept 5, 07)

Started feeling significantly better today.

(Thursday Sept 6, 07)

Over the past few days I have had a slight problem swallowing food. It feels like something is stuck in my throat. I scheduled myself a hospital appointment tomorrow for an Esophagogastroduodenoscopy (EGD) with biopsy, also known as upper endoscopy, is a procedure usually performed by a gastroenterologist (GI or intestinal doctor). This test involves passing an endoscope, a long, flexible black tube with a light and video camera on one end, through the mouth to examine the esophagus, stomach and the first part of the small intestine called the duodenum. I may also get a throat dilation if the doctor thinks it will help with my swallowing problem.

I had a panic attack today. I was carrying up a "hospital table" that I purchased over the internet, up to my bedroom. The package probably weighed about 20 pounds, a lot for me. I started getting short of breath and then I when into a panic attack feeling as if I wasn't getting enough air into me for breathing. I quickly went down into my bedroom to sit on my leather chair to calm myself down. It took about five minutes to relax. I've had this happen before and it is actually frightening.

(Friday Sept 7, 07)

I had the EGD today but did not have to have a throat dilation. The doctor said that my esophagus is clear but my stomach is full. So every time I was eating I was packing it on top of food that already existed in my stomach. And since my stomach is up so high, to me it felt like food was getting caught or slowing up in my throat. I spoke with my oncologist today. She said that she would prescribe Metoclorpramide (brand name: Reglan). Reglan increases the rate at which the stomach and intestines move during digestion. It also increases the rate at which the stomach empties into the intestines and increases the strength of the lower esophageal sphincter (the muscle between the stomach and esophagus).

New concern?
Now it makes me nervous that my intestines are not working properly. I hope this is a temporary problem. It scares me to think that parts of my bodily functions are shutting down and require meds to work properly. My oncologist said that if the Reglan doesn't work, that we could be forced to insert feeding tubes. I didn't ask any more questions about that at while on the phone with her. That scares me even more. I need this Reglan to work.

It might be a coincidence, but it seems like my full stomach problems may have started at the same time I upped my Oxycontin intake. I recently found out that Oxycontin causes a delay in the digestion of food in the small intestine. It takes longer for food to wind its way through your intestines. Fortunately over the past few days I have had less shoulder pain and overall pain. I have taken significantly less Oxycontin over the past few days so hopefully that will help my intestines process the food.

(Saturday Sept 8, 07)

I have been on a liquid diet, since yesterday, while the drug Reglan does its magic. That way I'm not packing on solid foods on top of my full stomach. Let me tell you, a liquid diet is very boring. There is not a lot to eat other than broth soups, puddings, gelatin, custards, cream of rice and wheat. I don't feel like I am getting enough nutrition on this liquid diet. I really want to eat real food. I will go back to a regular diet on Sunday as long as it feels like my intestines are back to normal, I have a couple bowel movements, and I no longer feel like I have a full stomach.

(Monday Sept 10, 07)

The last two days and nights have been filled with endless constipation. I would have to wake up every 1-1/2 to try to pass a little "old material" from my intestines. I did return to a regular food diet yesterday. Now today it has turned into severe diarrhea. I have been very physically exhausted and not sleeping well. I have probably slept only four hours over the past few days. Besides the constipation, I am feeling a little better today. I am back to taking Zofran for anti-nausea and fortunately I have had very little physical pain so I am only take a few Oxycontin tablets as needed. I just took an anti-constipation med so hopefully I will start felling even better later tonight. I need to gain strength back. Every simply physical chore makes me so tired.

Yes or No to treatment?
Tomorrow I am setup for my oncology appointment and treatment. I have given this a lot of thought over the past three weeks as I have not felt well since my last treatment. I really doubt that I will continue any future treatment. I am so afraid that another treatment will put me back to where I've been over the past three weeks, or possibly even worse. I don't think I am willing to put myself and my body through it. I am hoping that if I refuse further treatment that my remaining days will be more comfortable and enjoyable. This has been no way to live.

Phone calls
This is something I have been meaning to add to my journal for sometime and have always forgotten. Please forgive me that my phone conversations tend to be short. It is very physically tiring for me to speak on the phone. I don't know why this is. It might be because I am talking louder over a cell phone which is taking some of my breath away? I'm sorry if it seems like I am rude with phone conversations because I know the people calling me may have many questions for me. I just don't have the energy to answer all of them. You may notice how winded I sound over the phone. This doesn't mean I don't want the calls coming in. Just please understand for their briefness.

(Tuesday Sept 11, 07)

The big decision has been made
I did not have treatment today and have decided that I will not have future treatments either. Of course it wasn't an easy decision to make over the past few days and weeks but it seemed easy today while talking to my oncologist. She could tell that I have been through enough and was not surprised by my decision. We will now use medication to make my quality-of-life as high as possible.

I have not been sleeping well lately so I am now going to begin taking Ambien.

I will take three Zofran, anti-nausea meds, and one Decadron which may help stimulate my appetite. I have not had much of an appetite these days. I will take Oxycontin as needed for pain-management. I will try to continue to exercise on a daily basis with my elliptical machine.

Hospice Care
I will be contacted this week from a Hospice Program. They will send out a representative to determine my needs and how many times per week I will need assistance. I wonder if they vacuum too.

Hope
I hope that I begin feeling much better soon and can enjoy my time with friends and family. Except for very rare exceptions, I have not been able to get out of the house lately and visit with the ones I love dearly. I hope my body is as kind to me as possible. I will continue to update my journal, so please return. My thanks go out to everybody as you support my decision.

(Added: Thursday September 20, 2007)

(Tuesday Sept 11, 07)

I am at 133-1/2 pounds so I have some catching up to do. I was told about an interesting side-effect of Ambien, the sleep medicine. Rarely, after taking this drug, people have gotten out of bed and driven vehicles while not fully awake (sleep-driving). People have also sleep-walked, prepared/eaten food or made phone calls. So if you get a drowsy call from me at 3:00 in the morning, ask me if I just happen to be driving at the moment.

(Wednesday Sept 12, 07)

I have been concerned for the past few days as again it feels like food is getting caught up in the swallowing process. I'm afraid that if this continues that I will have to get a feeding tube inserted. I did not sleep well at all last night even thought I am on day two with the new sleep med Ambien. I probably fell asleep around 4:00 am and was up every 1/2 hour from then.

(Thursday Sept 13, 07)

Entering into insomnia world
Since Ambien wasn't working for me, I started a different sleep med called Trazodone tonight. I am in a very delicate situation. I cannot get enough sleep during the day or night. I don't know if it's from my medication, being unable to get comfortable enough to fall asleep, or perhaps I cannot clear my mind enough to fall asleep. I am having serious difficulty getting comfortable so that might be playing a huge part. I move and shift my body parts around approximately every minute. And that really is not an exaggeration. I might find a comfortable position for a moment but it quickly becomes uncomfortable. I don't have any padding on my skinny frame. I have to find softness in my mattress pads, featherbeds, or pillows. I have tried everything and have tried to sleep on just about every piece of furniture in my home. It is beyond frustrating! It is now that I wish I had a recliner. I even called my brother at 1:00 this morning thinking he had a recliner. If so, I was going to ask him if I could come over to his house to see if I could fall asleep on his recliner. I was desperate.

For the past three nights I would crawl into bed feeling as if I could fall asleep but as soon as my head hit the pillows, my eyes and mind would perk up. I even tried counting sheep but I would only get frustrated when I lost my place counting.

(Friday Sept 14, 07)

This is getting serious
Yet another night of not being able to fall asleep. I finally dozed off a little at 7:00 am. This is getting very serious. My body was so weak going into this insomnia phase and then to add three nights of no rest is having a major toll on my body.

And since Trazodone did not work last night, tonight I will try yet another sleep med called Rozerem. I am a walking zombie today. I cannot even begin to find the words to explain how awful I feel with getting only a few hours of (bad) sleep over the past three days. I am feeling absolutely frustrated, exhausted, and powerless. I have to get a good night of sleep or I'm afraid I will have to admit myself into the hospital to get an induced sleep. And I don't even know what that would involve but I know I can't go on like this for another night. The last thing I want to do is go back into the hospital. I don't understand why my weak and frail body just doesn't collapse from exhaustion. Particularly since I have taken three different types of sleep meds. What is going on?

Whatever it takes
I talked to my three siblings today and told them how desperate I have become. My sister Lisa has a comfortable cloth Lazy Boy-type recliner. My other sister Becky and my brother Scott really went out of there way today to pick up the chair from Lisa's house and delivered it to my home. At least now I will have a recliner to try to fall asleep in.

Entering into Hospice
Today I had a social worker and a registered nurse visit me from Methodist Hospital's Hospice Care Program. After signing a few forms and answering some questions, I have officially entered the Hospice Care phase of my illness. I know that it will be a good thing and the timing is right. I felt so bad for these two ladies as they were here in the middle of my worst day as a result of my lack of sleep. I was, at times, literally almost falling asleep at the table while they were talking to me. Then again I wish I would have fallen asleep on them. I was that desperate.

Hospice --- already impressed
The two ladies were so patient, understanding, and concerned for me. They were able to order a new model hospital and still have it delivered tonight. A delivery after 6:00 on a Friday evening; I am impressed that they were able to make this happen. Now I have a recliner and a new hospital bed to hopefully lull me into sleep. The new bed is longer, with a seven foot mattress. My previous hospital bed probably had a six foot mattress and my feet often hit the hard plastic footboard. And I'm 6'1" tall. The old bed had a very firm mattress that didn't work for me either. This bed offers a layer of soft plastic channels in which air is circulated through the channels. It's interesting because it slowly moves air through the channels. One moment I will feel a slight massage-like feeling under my back where the air is moving. Then about thirty seconds later I will feel air movement under my legs. This might work for me.

I will decide how often I would like a registered nurse to visit me at home. For the first week or two I will likely just have them phone in to check on me and answer my questions. I'm sure in the near future I will want them to personally visit starting with once a week.

I'm a mess
So my sister and brother are delivering the recliner at the same time my hospital bed is being installed upstairs. I am completely worthless. I barely had the strength to get out of a chair. To seem me on that day was probably very difficult for my siblings.

(Saturday Sept 15, 07)

And the winner is....
I still had major problems sleeping last night. The hospital bed was not soft enough so I tried the recliner. Eventually I was able to get a few hours of sleep on the recliner. It's a small start but not nearly enough to get me caught up and feeling well.

I softened the hospital bed this morning with two layers of sleeping bags hoping that it would help tonight.

(Sunday Sept 16, 07)

I had chest pressure last night. Perhaps it was anxiety driven from insomnia. That did not help sleep matters at all. Last night I took a combination (my own concoction) of all my various sleeping meds since I wasn't falling asleep. I started like I should; taking what was prescribed to me. After about one to two hours of tossing and turning, I would take a different sleep med. I did this most of the night. I finally managed to get about five hours of sleep waking up at 9:30 am.

I lost 6 pounds this past week. Not good being down to 130-1/2.

(Monday Sept 17, 07)

It's the same story as last night with even more chest pressure pain. I mixed up another batch of sleep meds. I got four hours of sleep, waking up after 12:00 noon.

I can't keep struggling like. The second registered nurse that is assigned to me through Hospice called me this afternoon to introduce herself. I did not meet her last Friday. I told her that my insomnia continues. She recommended that I stop taking Decadron. I started taking Decadron about two weeks ago while I was having digestive problems. I was losing too much weight. Decadron is an anti-nausea, appetite stimulant that is used during chemotherapy. Per doctors orders; I took it in hopes of building an appetite to get a stronger appetite. One of the side-effects is difficulty sleeping (insomnia) so that alone might be the cause of my problem. I was not aware of that side-effect while going through my insomnia period.

The nurse and I talked about all of the combination of sleep meds that I have tried and how ineffective they were for me. She decided to go back to old meds to see if it would help. She recommended two Vicodin (pain relief) and two Ativan (anti-anxiety and sleep aid). So tonight I will not take any of the three new sleep meds that were prescribed to me this week.

Thank goodness for Google
Over the weekend, in the middle of the morning while wide awake, I Googled for an answer to insomnia. I found some interesting things to try. Here is the website if you should suffer from insomnia: http://www.well.com/~mick/insomnia
Some of the tips are well-known while some are new (to me at least). Then again, I have never had insomnia to worry about it. Here are two I am going to try out;
• Drink a warm cup of chamomile tea before bed
• Fall asleep to the sounds of beach waves crashing on shore. I went out and purchased an alarm clock that has four sound effects, including beach waves.

I will take these two ideas and add it to my list of arsenal, including the Vicodin, Ativan, and no more Decadron. Cross my fingers for tonight!

(Tuesday Sept 18, 07)

Amazing! Finally!
Eight hours of sleep, waking up at 8:00 this morning. Yippee!!!!

(Wednesday Sept 19, 07)

Same routine
Seven hours of sleep, waking up at 7:00 this morning.

(Thursday Sept 20, 07)

Same routine
Seven hours of sleep, waking up at 10:30 this morning. Like most every other night; I wake up to go to the bathroom a couple times and often go down into the kitchen to eat a snack. Last night I just happened to wake up more often and stayed up for one hour during a plate of nachos snack in the middle of the night.

This has been a really rough period. I want to thank my friends and family dearly for everything they did for me including:
• Driving me to pick up meds when I couldn't drive
• An overdue haircut at my home
• Buying food and items then delivery them
• Delivering my recliner
• Visiting (when I was up to it)
• Preparing and delivering home-cooked meals
• (and other things I am forgetting)

I don't know how I would have gotten through it without their love and support. Thank you so much!!!

So what now
My main goal is to build strength and add weight. I am sleeping better but I lost a lot of ground last week. I have to build up my strength. I have done close to 1/2 hour on the elliptical over the past few days. I am going to try to put even more time on the machine. I get so winded, so easily.

One day at a time
I don't know how much time I have left. This time I did not ask my oncologist. Once I made the decision to quit further treatment, I didn't think I needed or wanted to know. Whereas before, I would base my future treatments on her estimates to try to make the best medical decision for myself. I am very afraid of the answer now. I am living life as though I have one or two months to live. I think it's quite realistic. I hope I have more quality time than that. Who knows? I think I will get a better idea as each week goes on. How am I feeling? What is happening to my bodily functions? Am I getting weaker or stronger?

My appetite is fairly good again. My digestive system seems to be close to normal. My swallowing problem has improved, although I make sure I chew my food very well before swallowing and I always have something to drink nearby to wash it down if needed.

Oxycontin vs. Oxycodone
I had to clear up some confusion that I had with the difference between Oxycontin and Oxycodone. I'm not a doctor but this is my best understanding after speaking with a hospice nurse.

Oxycontin is a prescription painkiller used for moderate to high pain relief associated with injuries and pain associated with cancer. Oxycontin contains Oxycodone, the medication's active ingredient. I personally have three different prescriptions for Oxycodone. Oxycontin is a long-acting form of the narcotic medication Oxycodone.

This is what has been prescribed to me:
• Oxycodone HCL 5 MG. These are not long-acting.
• Oxycodone HCL 20 MG - ER. These are long-acting. The 'ER' is abbreviated for "extended release".
• Oxycodone HCL 40 MG - ER. These are long-acting.

Currently I am taking one Oxycodone HCL 40 MG – ER in the morning and one at night to prevent pain with a long-acting formula. I am to taking 2-4 tablets of Oxycodone HCL 5 MG throughout the day, as needed, for pain flair-ups.

I wanted to mention this to other patients or their care-givers that are following my journey. There is a difference in the meds that I was unaware of. I recommend you ask your doctor what you are taking and fully understand the difference between your prescriptions.

(Added: Friday September 28, 2007)

(Thursday Sept 20, 07)

I need to work on my poor posture. I lean forward at the hips and it hurts to straighten my back. I exercised one hour on my elliptical machine, likely the most I have ever used it in one day. One half hour in the morning and another half before bed. The night-time routine seemed to really help my posture and I felt stronger so I will try, try to do close to an hour every day.

(Saturday Sept 22, 07)

A visiting friend re-sparked an idea I previously had to use a grocery delivery service. I went grocery shopping this morning and it took a lot out of me. Besides, I have always hated shopping for groceries.

Another visiting friend came up with an idea that I should have an intercom system installed for my front doorbell. I don't always hear the doorbell on the third floor of my townhome. This would allow me to speak to the person at the door to find out who it is and to let them know I'll be down.

I am now taking more Oxycodone 5MG to relive pain throughout the day. I was taking 40MG two times per day. Now I will take 60MG two times per day.

(Sunday Sept 23, 07)

I gained 4-1/2 pounds this week.

(Tuesday Sept 25, 07)

I slept very well last night but had to endure a day's worth of shoulder and chest pain. I exercised for one hour but that didn't help with the ongoing problem I have with deep, heavy breathing as I walk around my townhome, particularly walking up steps.

(Wednesday Sept 26, 07)

Yesterday and today I had several episodes of shortness of breath leading to anxiety attacks from carrying light loads while walking up my stairs. As in the past I could calm myself down in about five minutes.

Generally I feel descent in the morning, not great in the afternoon, and much better in the evening. Perhaps it's because I am doing small errands around home in the afternoon and carrying around items.

(Thursday Sept 27, 07)

I didn't have any shortness of breath-induced anxiety attacks today. Then again I don't recall carrying anything upstairs that would have weighed more than a pound or two. I wish I could feel throughout the day like I do most nights at 10:00 pm.

I weighed in at 140-1/2 pounds, the most since July 29, 2007.

A typical day in my life
I wake anywhere from 7:00 am to 10:00 am, depending how I slept overnight. I move at a slow pace. Nearly every time I walk upstairs I consciously wonder if I will have difficulty breathing or whether it will result in a minor anxiety attack. I am keeping busy getting my life organized in preparation of my death. It's more work than I thought it would be. In my case it's even more so because I am in the process of closing my game business too. I am creating documents for my siblings detailing what I've completed and what needs to be done after my passing. Almost every moment of the day I am in some level of pain or discomfort. It's very tiring at times.

The simple life
I enjoy getting visitors. I have friends that come over and watch a movie with me every once in a while. I enjoy our time together. I rarely go out to see a movie as it's more comfortable at my home and I have access to anything I might need at my fingertips such as; medication, food, drink. On the other hand, I don't want to be home-bound so I do enjoy going out to see a movie when I'm confident that I will feel well enough for the next few hours. I am doing much of my shopping online so I don't have to navigate the long aisles of huge department and home-improvement stores. Most days I exercise three times a day for 20 minutes per session on my elliptical machine. Some days my stomach bothers me too much so I only get in two sessions. I believe that I would be in very poor shape if I wasn't exercising.

I have a lot of food in my freezers. Most of my lunches and dinners are frozen packaged meals, vegetables, or home-made meals and desserts that were made in my home or the homes of friends.

I can usually get myself to fall asleep at night, around midnight, on my hospital bed. I will sleep for about two hours, get up, and grab a snack. I'll usually be up for about an hour during my mid-morning snack. I'll crawl back into the hospital bed again and sleep for another couple hours (hopefully). Some nights, after two sleep periods on my bed, I need to go downstairs and finish my sleeping on the reclining chair.

(Friday Sept 28, 07)

Battling the anxiety attacks
My Hospice care social worker stopped over this afternoon asking me questions to get to know me better and to make sure the Hospice program is going well for me. I mentioned my breathing-induced anxiety attacks and she had some helpful hints. She said that when it happens to talk aloud and say positive things such as; "I'm going to be OK", "I can get through this.", "I am getting enough air to breath." She said it may also help to walk or at least move my legs as I try to come down from the anxiety attack, rather than sit down and wait for it to get better. I already find myself doing this in a preventative mode when walking upstairs, even if I'm not carrying anything which will help trigger an attack. I have said out loud "I can do this." I am confident her hints will help.

I decided late tonight that I'm in too much pain, too much of the day. Starting tomorrow I will go from 60 MG to 80 MG of Oxycodone two times per day. I hope it helps.

(Added: Thursday October 4, 2007)

(Saturday Sept 29, 07)

I started taking Ambien to get a better night sleep. Now that I'm convinced the Decadron med was causing my insomnia, and that I'm no longer on that med, I decided it was time to try one of the three sleep-aid meds that were prescribed to me during insomnia week.

(Sunday Sept 30, 07)

I slept fairly solid last night. I will continue with Ambien to see if it helps. I am now taking 16 prescription tablets per day, not counting any pain meds I take for pain flair-ups. I weighed in at 142 pounds, a gain of seven this week.

(Tuesday Oct 2, 07)

WOW... 1-1/2 liters
This afternoon I had 1,500 cc (1-1/2 liters) removed during a Thoracentesis (a procedure to remove fluid from the space between the lining of the outside of my right lung (pleura) and the wall of the chest). The attending nurse said they normally stop at 1,000 cc. They asked if I was OK during the procedure and I told them to keep going. It wasn't pleasant but it did go better than previous Thoracentesis' I've had. They said I should feel better tonight and shouldn't get as easily winded. Next time I won't wait so long to get tapped. I didn't realize that there would be so much fluid. I thought I was just getting very weak and needed to build strength.

I made my bed even softer today, with the aid of a folded feather-top mattress pad, to see if that helps me sleep better too.

(Wednesday Oct 3, 07)

Air in a can
I had my weekly visit from my Hospice nurse today. My right ankle/foot is swollen and large but not of any concern unless it becomes painful. This is not an uncommon result of the cancer itself. We talked about having an oxygen machine brought into my home. I decided that it was a good idea. I could use it should I get out of breath or to calm down from an anxiety attack. The tank/machine will be located upstairs by my bedroom with air hoses long enough to reach down at least one flight of steps to my main floor. I figure; why not have it on hand if needed.

I still get a little winded when I walk up steps but not as bad; or as often.

Zonked out
Now that I am taking twice the recommended dosage of Ambien pills for sleeping, and not getting the full eight hours of devoted sleep they recommend, I find myself very tired late into the morning. I still wake up at about 2 to 3 am to enjoy my snack that ends up taking one hour to power down before my next sleep wave. I then wake up around 7 am, exercise, eat breakfast, and then get caught up on things on the computer for a little while. After 9:00 am, I hit the wall and need to take a nap on the recliner. So I 'm asking people if they could please call/or text me in the afternoon with non-emergency calls. Thank you

(Added: Thursday October 11, 2007)

(Friday Oct 5, 07)

My left foot and ankle are beginning to get puffier too. My hospice nurse told me that there is no problem with my heart. The circulation within my body isn't working as efficiently as the good old days. The circulation is going down but not coming up like it used to. The only thing I can do is wear loose socks and footwear and try to keep my feet up, preferably above the heart when I nap or sleep. That is a lot easier said than done. As long as my puffy feet do not become painful, it should be more of a nuisance rather than a concern.

Sleeping with oxygen
The nurse also said sleeping with the oxygen attached to my nostril may help with my sleeping by getting more air inside me. I will try that tonight.

Honesty
I feel my days are numbered. I am losing strength. Simple tasks are becoming not-so-simple. And now sleeping with oxygen just makes me feel like one more part of my body is failing.

Battling Dry Mouth
My Hospice nurse suggested a line of products called Biotene to help with the problem of dry mouth that I experience throughout the day, particularly at night while sleeping. She said my meds are likely causing the dry mouth. I found Biotene mouthwash, toothbrush, and gum at Walgreen's Pharmacy. And they actually have a pleasant taste.

(Sunday Oct 7, 07)

Still Experimenting
I am still trying to find the best sleep med schedule. Last night I took two Trazodone and slept a solid 5-1/2 hours on the bed, then had breakfast and read the paper. At 9:30 am I sat on the recliner with the intention to get some more sleep and slept a solid 3-1/2 hours. That is the best I have slept in a long time. Tonight I might try the same routine but with just one Trazodone before bed then take another when I wake up in the middle of the night.

I have gained over 16 pounds since insomnia week three weeks ago. I gained five more pounds bringing me to 147, the most I have weighed since March. However, some of this weight is the fluid that I am collecting in my feet.

I am not exercising as much as I used to. I try to get at least 20 minutes in per day, 40 if I have the energy. It is more uncomfortable to exercise now with my very puffy feet.

Puffy Feet
Both of my feet are now very puffy with fluid. I asked my Hospice nurse what I can do about it and I keep getting the same answer, "not much". I will apply regular skin lotion to relieve the dryness and redness. There is not a medical procedure that would help. There is not a collection of fluid that can easily be drained. Another reason they don't try to drain out the fluid is the risk of infection. She said I could begin taking a diuretic called Furosemide (commonly marketed by under the brand name Lasix). This will increase the amount of urine I make which may cause my body to get rid of excess water. I will begin this med on October 11. Hopefully it helps.

(Tuesday Oct 9, 07)

Hospice Home Care
I was really hoping to leave this world in the comfort of my own townhome. I had many thoughts today regarding this very important decision and am beginning to come to terms that there is a good chance that I will need to be moved to a Hospice home. I think there will be a point where I do not have the strength to walk the stairs and maintain the townhome on my own. I am requiring help from friends and family to do simple chores such as taking out trash and recyclables to the curb and carrying items up and down to the three levels of my townhome.

I started a document that will list items that I hope can be moved from my townhome to my hospice home, such as the recliner chair and my computer equipment. I have an appointment tomorrow with my Hospice nurse tomorrow. I will ask her a list of questions regarding the Hospice home program. I wonder most when it's time to move into a Hospice home.

Oxygen
I started using the oxygen machine today to see if it would help feel better, or give me more energy, during the afternoon when I feel at my worst. Using the oxygen does help me if I am carrying up items while walking up the steps. I recently used the oxygen while watching television for about one hour. It left my lungs feeling "tight". I don't know how to better explain it. And I don't know if it's a good, bad, or appropriate feeling. Perhaps my body just has to get used to having oxygen administered in this manner.

(Wednesday Oct 10, 07)

More Hospice Info
My Hospice nurse told me that living at a Hospice home is not covered under insurance. The cost is about $400 per day which is actually lower than I thought it would be. I called my insurance company and (if I understood it correctly) I have to pay 20% if it's an in-house, network-allowed home or I pay 40% if it's out-of-network. I looked over some of the pricing information for the Hospice program and to me it states that resident living in a Hospice home would cost $640 per day, a price closer to what I expected.

Each room would have a private bathroom and recliner. There are four locations in the Twin Cities area as part of the Methodist Hospital/Park Nicollet Hospice program.

Friends and family continue to visit me which REALLY means a lot to me. I think I would go a little stir-crazy without their company.

(Added: Thursday October 18, 2007)

(Sunday Oct 14, 07)

Several friends and family came over today to move furniture and household goods from my third floor to my main living area. Now my hospital bed, computer, extra television, and elliptical machine are on the same level as my living room and recliner. I can now brush my teeth, wash my hair, and even give myself a sponge bath to clean up when needed. The only thing upstairs is my full shower but it takes a lot of energy for me to get up there to take a real shower.

(Tuesday Oct 16, 07)

I feel very physically weak today. I feel like I'm losing strength each day. I continue to get a lot of help with errands and household chores from friends and family.

(Wednesday Oct 17, 07)

My journal entries will probably be short from here on out. My days are getting more and more typical so there is less to say. A typical day for me is to wake up at various times in the morning with back pain because I just cannot find the bed or recliner soft enough to carry me several hours for an extended sleep period. Since I don't sleep well at night, I will take frequent naps during the day. I watch a lot of television and a few movies when friends stop over. I eat very simple comfort food that is in my freezer. I don't cook much any longer. It's too much work.

I take many meds throughout the day to try to keep me comfortable. I don't get out of the house much any more either. I went out for lunch twice within the past week and it was more difficult than I wish it would have been. It's easier for friends to visit me for lunch. I don't drive my 2006 Toyota RAV4 very much. I may put it up for sale soon and rely on friends, family, and even taxis if needed to get me to the few places I need to go. My dear uncle Ralph passed away last Saturday and I didn't have the strength today to travel to Rochester Minnesota for his service and to spend time with his family.

I have most of the things on my checklist done that will make it easier for my siblings to take care of business upon my passing. I walk around in a zombie state at times. My eyes appear droopy at times when I speak to people directly. I think a lot of it is the result of medication side-effects. I wish I could show and experience more joy. Regardless of my state of mind and alertness, I am always very pleased to have visitors!

(Added: Monday October 22, 2007)

(Friday Oct 19, 07)

My first hand-bathe today
My hospice nurse informed me of a store-product for which I then had a friend pick up for me. It's a packet of eight pre-moistened sheets that you warm up in the microwave. Then you wipe the warm sheets over your body. Hopefully that will get enough of the funk odor off me to be presentable. I will probably do this every 2-3 days. It was fairly easy to do. I also shampooed my hair today which was a little more difficult to do without getting water all over my sink area. My plan is not to go upstairs for any reason.

(Monday Oct 22, 07)

No more elliptical machine
My hospice nurse suggested that I no longer need to use my elliptical machine as it's probably not building any more strength for me, rather zapping precious energy. I am going to try to walk around my small little area on my main floor where I spend 99.9% of my life. I will also try to move my feet and legs around while in a sitting position. Now even walking up a half-flight of stairs wears me down.

(Friday Oct 26, 07)

Why was my website unavailable?
The company that hosts my website has had technical problems for several days. The problem has not been resolved yet. So that is why I had to supply you with a different website address of:
http://mywebpages.comcast.net/markymark1964/

Life in the hospice home
It's very different living here. In some ways it's easier as I have a lot of great care providers and nurses providing meds, cooking great meals, laundry, bathing, making beds, etc. In some ways it's more difficult as I can't get out of bed in the middle of night without two nurses checking in on me. So I have no privacy here. I am always EXTREMEMLY fatigued and winded so I feel like I am going downhill quicker and quicker. This would be happening if I were still at home too so its better that I have care at my immediate disposal. Please limit your correspondences (phone, e-mail, text messages) to me as that too is more difficult.

Over the past week or two I have become lactose intolerant so that has made life a little less pleasant and has cut down my food options.

I'm guessing my journal updates will be less frequent

Part 1, 2005 | Part 2, 2006 | Part 3, 2007

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Mark Nelson died peacefully on October 31, 2007 at the age of 43 after a two year battle with cancer. He is preceded in death by parents, Roger and Ardyce. He is survived by brother, Scott; sisters, Becky and Lisa (Kevin) Johnson; nephew, Logan Johnson; niece, Bailey Johnson; and many other friends and family. A celebration of life will be held at BUNNY'S BAR AND GRILL in St. Louis Park, on Monday, Nov., 5, 2007, from 2-6PM. Memorials preferred to N.C. Little Memorial Hospice, 7019 Lynmar Lane, Edina, 55435.

Published in the Pioneer Press on 11/4/2007.