We have just received some alarming news about my husband, Jim, a six-year scc bot survivor. He has been through so much already, this is just too much to bear.
A little background - In August 1999 he was diagnosed as stage T3N2cM0. He was a nonsmoker, and like so many others had practically no symptoms, until he noticed an enlarged lymph node. He underwent the RADPLAT treatment at Mayo Clinic - intra-arterial chemotherapy with cocurrent radiation, follwed by a neck dissection. Things seemed to be going along pretty well, considering all the misery that is a natural part of the treatment. Then, about three weeks after the surgery, his face swelled enoromously. His eyes were nearly swollen shut, and his lips were so swollen he resembled a duck. We went back to Mayo, and they really had nothing to offer except waiting for it to go down. We also consulted two ent's locally (Des Moines, Iowa) who said the same thing. About four weeks after that, he fell at home and the entire incision reopened. Our local ent tried closing the incision and giving him hyperbaric oxygen treatments to help it heal, but nothing helped and February 4, 2000, the left carotid blew. He was at home watching football at the time (Sunday afternoon). Luckily, he remained conscious and was able to keep pressure on the wound and I got him to the hospital before he bled out. However, due to the loss of blood and emergency room efforts to stop the bleeding, he suffered a stroke affecting his right side. They did a pec flap to cover the neck wound, with little hope that it would "take." Interestingly, within 24 hours of the surgery his swelling was gone. Twelve days later, the doctor told us that the left carotid was at risk and they would need to do another pec flap at once to protect it. He said it was far too soon to do another surgery, but there were not any good options. Amazingly, he came through that surgery just fine and we began a long waiting period to see if anything would heal. Finally, it did. He spent a month in the hospital and another month in a skilled care facility. He is able to walk with a cane and has some minor memory problems - and a trach and a feeding tube. With all that, he is still glad to be alive and enjoying some quality of life.
Whew. Sorry, that turned out to be a book. And a potboiler, at that.
Anyway, the latest disaster. He had a bump on the back of his neck, right at the hairline. He had asked his dermatologist about it, and the doctor said it was a sebaceous cyst and there was really no need to remove it. About 3-4 months later he went to the ent doctor for a regular checkup. The doctor noticed the lump and said that it didn't look at all likely as possible recurrence, but he would take a needle biopsy just be sure. He did, and the report came back that it was scc. Now we are waiting for approval from Blue Cross for a PET scan to be sure there is nothing worse. If it is localized, there will be surgery to remove the growth and the doctor is pretty optimistic about the outcome if that is the case.
I just had to share this with someone. I'm so anxious to have to test and get on with things, yet so afraid of what we may find out.
How do you bear the unbearable?
