Last week I discussed the worst case scenario, namely, what if I wouldn’t survive these three cancers in 2007. Well, I am delighted to say that I am still here and writing this chapter, which is the last one in my series. So – now you’ve come along on my journey through these cancers. You read about the treatments, my support systems, the need to educate myself, and many other topics.
At one point, my surgeon discussed the average costs of a throat cancer like mine with his assistant, and he estimated it to be in excess of a quarter of a million dollars. If we did not have any health insurance, you can imagine that we’d be in very deep debt by now, and most likely our house would be gone. Even with our insurance (which is “catastrophic” coverage only, meaning we have a sky high deductible), we were over $12,000 out of pocket that year. And that is not even counting the frequent trips for doctor visits, scans, and associated hotel stays (some were 200 miles away from where we live). Cancer can be extremely, sometimes even prohibitively, expensive; see this article that I found just recently. It talks about the cost of new cancer fighting drugs. And on a different note, after having had three cancers, I will (under the current rules as of 2010) never be able to change to another insurance company. No private insurer would take me on, so I need to be extra careful not to miss an insurance payment ever!
Having been through and survived all the treatments, now is the time to ask questions like: How does follow-up work? What do I need to do? When will I be cured? Or better, will I ever be cured?
Even if today I do not have any known signs of cancer, there are a number of things that are still not “right” with me.
Firstly there is the thyroid medication that I need to take for the rest of my life. Since my thyroid is gone, I need to take a replacement hormone to mimic the function of my thyroid gland. This medication I take, Levrothyroxine (the generic form of Synthroid), is measured in micro-grams, an extremely small dose indeed (technically it is a 1-millionth of a gram, or 3.52739619 × 10-8 ounces); and it is rather fickle when it comes to absorption rates. You are supposed to wait at least 30 minutes until you can eat after taking your pill, meaning any food can severely interfere with the uptake of this medication. To see if the level of thyroid hormones in your body is “within range,” regular blood tests are ordered. I have my blood tested about every two to three months. The values to look at are TSH (Thyroid Stimulating Hormone) plus T3 and T4 in the blood levels. For more info on this important balance between the various thyroid hormone components, see: here and here. But popping a pill a day is not the entire story. My thyroid hormonal balance is still not the way I like it (after 3 years of fiddling with the dosage). I am still extremely tired, and my energy is sapped most of the time. I am irritable, have problems with anger, and at times I am depressed (something I hadn’t experienced before my bouts with these cancers). So, my thyroid cancer may have been surgically removed and radioactively eradicated, but I still have a chronic thyroid disease that needs constant and lifelong attention.
About six months after my RAI ablation, I had a full body scan to find remnant thyroid cells which could be cancerous. This scan showed an “uptake”. Oh, how I loathed that word. In my case it meant that the scanner found some thyroid cells at the bottom of my neck. My doctors decided to repeat the scan in another six months, and again after another year. In both cases it showed the uptake at the very same spot. After some consultation with other doctors it was finally agreed that some of my saliva must have been trapped in scar tissue from the throat cancer operation each time the scan was done on me. Luckily there is a blood test that shows thyroglobulin antibodies if there is cancer left in your body, and my antibody values were extremely low, indicating no cancer present. So – now my doctors feel that though there was an uptake on the scans, that I am actually cancer free. This is also a good example how one cancer treatment can be affected by the treatment for another. Without the scar tissue from the throat cancer, I would not have needed the subsequent additional thyroid scans, and the anxiety and fears associated with hearing the word “uptake”, and that there might be more cancer present in my body.
But there are other issues as well, things I have to live with, like – my left neck is still numb from nerve damage during the throat cancer operation; also, my left arm is partially numb from the skin cancer op (luckily my fingers are working fine). I also have constant dry mouth, and nightly, reach for the bottle next to my bed (I really should make that appointment with AA) … no, I am only talking about the water bottle on my bed stand. The dry mouth also is not so good for my dental health. In addition, I still have problems swallowing certain foods; some meats and breads gum up in my mouth, and I always need a drink of liquid to get them down. “Aspiration,” meaning getting food down one's windpipe, is also an occasional problem, and I am always very careful when chewing and swallowing, because I know that food particles in the lungs can easily lead to nasty pneumonia.
Of course nowadays every little insect bite, or every bump or bruise on me, is inspected thoroughly and treated with great suspicion. As I described before, I had my share of so-called harmless cysts that turned out to be much more than I bargained for. These days I’d rather cry “wolf” a few times too often than be sorry again. Self-examination is one of the tools to spot things on your body that are not supposed to be there. Of course, with all the scarring on my neck, it is really difficult to detect “new” stuff there when I feel for bumps, etc.
Some cancers can be detected by specific blood tests, like the thyroglobulin check for thyroid cancer, but others, like my throat cancer, the Merkel cell skin cancer, or breast cancers for that matter, do not have such tests. Here, the only way to find out if one is in remission or cured is to wait and see, and hope that the cancers do not return. Oh, I so hate to wait.
The other great tool for follow-ups are PET and CT scans. Since my cancers, I had several PET scans and a few specific CT scans to the neck area. PET scans can detect cancerous growth down to about the size of a large pea (10 mm or 0.4 inch). As more time passes since the cancers, my intervals between doctor visits and follow-up scans increases. First it was every few weeks, then three months, soon it was six months, and now the docs want to see me only once a year. Hey, that is good news, it means I am on the mend! Yippie!!!
Medical science moves along constantly, since I contracted the Merkel cell skin carcinoma (in 2007), scientist have found out (in 2008) that it may be caused by a newly identified virus (called merkel cell palyoma virus or MCV); and guess what, it is a “neuro-endocrine” virus. Does that ring a bell? It is, again, a cancer caused by a hormonal disturbance of the endocrine system, like the thyroid. Could the thyroid and the skin cancers be somehow related? I don’t know the answer to this, but it is interesting to observe that two of my three cancers may be caused by a virus (HPV for the throat and MCV for the skin cancer).
Fear of recurrence, or of contracting yet another cancer, is constantly on my mind. Especially because the Merkel cell skin cancer is so very dangerous – some studies say that about half of all patients will suffer a recurrence within 5 years. So, one wonders, will there be another shoe to drop for me?
One is definitely not the same person after going through all of this! Life and the three cancers have surely left permanent marks on me, physical marks, but also mental/emotional changes. Something I need to live with, and the emphasis here is definitely on “live”!!
So, now you know a whole lot about me and my fight with these three monsters. I hope that some of my information was useful to you, or to someone you know. If anyone has specific questions, please feel free to asked me directly.
Thank you so much for staying with me through this 10-part series.
Here is to your health! We well and prosper!
HD in Oregon