Joe's Story

By Carol Gray

My husband, Joseph Blaustein, lost his courageous battle April 16, 2003, 20 months after being diagnosed with adenocarcinoma of the distal esophagus. He was 55 when diagnosed & had never had a serious illness. In retrospect, he had a lot of predictors for EC (smoked a pack a day until 1975; his mother & her 2 brothers all had cancers; 10+ years of nasty heartburn; & an ache in his chest the year before that was attributed to bronchitis) but he had a doctor who had never seen a case of EC.

Early on, Joe did really well. He breezed through neo adjuvant chemo & radiation, recovered well from THE surgery, had good pathology results (T1, N0), and returned to work & to tennis. For 4 months he ate like a champ & we celebrated beating the odds, but then in May that scary ache in his chest returned & there were mets in his lungs, adrenal glands & brain.

He underwent whole brain radiation before he even had symptoms & began chemo again. In July, with his white cell count very low, he contracted aspergillus, a nasty fungal infection, in his lungs. Kaiser sent him home to die, so we switched health plans. The new doctors called in an infectious disease specialist who prescribed Vfend (voriconazole) a new antifungal that actually worked. There was a 5 month break from cancer treatment while he regained his strength but also dealt with surgery for a detached retina & a deep vein thrombosis in his leg requiring placement of a Greenfield filter. By December the tumors were growing again & one chemo agent & then another was tried to no avail. Tumors spread to his spine, ribs, & liver. The final blow was a blood clot that developed in the superior vena cava, probably on the tip of the PICC line.

This is one of so many sad tales posted here, but Joe was a remarkable man & managed to squeeze a lot of living into these last months. That is the message of hope I want to convey, that even in the throes of this horrible illness, you can find moments of joy& delight & profound meaning. Joe decided that his illness would not be a secret & by sharing what was happening, he drew support from family, friends, & co-workers. They found time to visit & our house was filled with company. They picked Joe up, wheelchair, oxygen & all, & took him on outings. Between pre-op treatment & surgery, we splurged on a fabulous cruise through the Panama Canal. Just 10 days before the end, our children created their own "Make a Wish" foundation & flew us 1st class to a family party in Philadelphia where Joe amazed us all by donning his tux & dancing one slow dance with me. He kept busy with e-mail, sending jokes far & wide. He supported the economy by buying gifts on-line for many of the people dear to him. At each stage of his illness, he found activities that he liked & could still manage.

We learned some practical lessons along the way, and though they might seem obvious, I'll pass them along in hopes they might be helpful to someone else:

TOP 10 TIPS FOR EC
1. There really are no clear treatment guidelines. Although we read countless journal articles & spoke to many doctors trying to sort out treatment options, the studies & statistics did not provide a clear recommendation.	2. Know your infusion pump. We relied on a nurse who set up the equipment & told us it was fool-proof. Although we checked with her again 2 days later, she still did not see that she had assembled it incorrectly. When we finally figured it out for ourselves, we saw that she had not closed the pump properly & the wheel that pushes fluid along was not in contact with the tubing.
3. Find a good surgeon. The first surgeon assigned was annoyed by questions & angry when we insisted on preoperative staging (EUS & PET scan). We asked every connection we could think of until we found someone who knew the best surgeon available with Joe's health plan. He was reassuring, drew pictures to explain procedures, even congratulated Joe on the shape of his rib cage which he said would make the operation easier to do.	4. Don't worry about cisplatin harming your hearing, the other drugs will also harm it. Because Joe had a serious hearing loss from childhood, he opted for taxol & 5-FU for the first chemotherapy & it increased his hearing loss. When the disease metastasized, he figured cisplatin was his best bet & it also increased his hearing loss, but not as much as the first drugs.
5. If you have an HMO, find a primary care doctor who knows the system. Although Joe only saw this doctor twice, she was a marvel of efficiency, getting the right referrals without delay. She did thorough physical exams, understood the significance of symptoms,& sent Joe to the appropriate specialists.	6. Demand appointments. Don't be put off by secretaries who offer you appointments in two months time. If the situation seems serious, explain, be insistent, & get an appointment within a week.
7. Ask your doctors what to watch for & what constitutes an emergency. When Joe's foot swelled up we had no idea that solid tumors leave you prone to blood clots & that it was a critical situation. A nurse asked, "Is this your FIRST clot?"	8. Don't tolerate pain. Everything is worse when you're hurting. Good pain control that doesn't leave the patient in a stupor, is possible. You won't get a medal for bravery so take the prescribed pain medications.
9. Keep tax records. Make a list as you go of doctor appointments, prescriptions, co-payments, mileage & parking. If you have to reconstruct it from calendars & receipts at the end of the year as we did, it will take you 2 weeks of work & cussing.	10. Buy a big new TV. You're going to be home a lot. Get a satellite dish, a DVD player, TIVO, & subscriptions to the sports channels if you like sports. And don't forget headphones if you're hard of hearing.
Just one more tip: Hope for the best, but plan for the worst. Get your affairs in order right away while you feel good & can cope with the decisions& details. Knowing that you've dealt with these difficult issues will give you some peace of mind & let you use your energy on more enjoyable activities.

I regret that I didn't post to the entire [EC-]group but only replied to individuals from time to time. I was intimidated by how large an audience there was. I'll close with my thanks to everyone on the EC list who was willing to share & provided a sense of community & a source of practical advice through this ordeal. My special gratitude goes to AL who spent an evening with us on the phone at the beginning. There were days when I couldn't bear to read the postings, but I kept coming back to follow your journeys which so closely paralleled ours.

To those who are fighting EC & those who are caring for them, I offer these words from a prayer that has sustained me:

May the source of strength, who blessed the ones before us;
Help us find the courage to make our lives a blessing
And let us say, Amen.

Carol Gray
Los Angeles