Friday, October 31, 2008

Fixing Myself - One minor ailment at a Time

I actually felt good today. Not just physically good, but also almost free of anxiety. Cancer brings on a lot of anxiety. Every ache and pain feels like a cancer recurrence. Two weeks ago I began the journey of trying to understand every physical issue that was bothering me. It’s a long list and I’m going to talk about each one. So, for those who don’t really want to read about someone else’s minor health problems, there is no need to read any further. But, for those of you that are in my situation or are helping someone like me, this may actually be instructive. In order of what has been bothering me physically, here goes. 1) A change in vision. 2) Lateral arm movement and shoulder pain. 3) Fatigue and always feeling cold. 4) An acute pain in my jaw that seems to happen about once every 4 months and lasts for 24 hours. The mind plays funny tricks on cancer patients. Being paranoid is not too strong of a term to describe it. Every one of these could be caused by some serious disease. I decided to attack each of these individually two weeks ago and to get some answers.

1) Vision – I had my eyes checked. My prescription glasses had not changed in decades. My eye doctor confirmed following my exam that my vision had deteriorated a little, but he saw no signs of eye cancer or eye nerve cancer. He prescribed a new pair of glasses in the 20/40 range. My anxiety about my eyes is now gone. I also have a new pair of glasses and my vision with glasses is 20/20.

2) Lateral arm movement and shoulder pain – I visited my family doctor. It was my first visit with him in over 3.5 years. I told him my concern about ALS (Lou Gehrig’s disease) or MS since it was attacking both arms and shoulders in a similar fashion. I asked to see a neurologist. He suggested an orthopedic surgeon. After listening to his reasoning, I agreed with him. I saw the orthopedic surgeon. He first did a full set of shoulder x-rays. Based on those findings he did an extensive MRI on each shoulder. We then discussed the results. He sees a slight tear in the tissue between my ball and socket in the shoulder on the right side and stiffness in both. Although he can’t rule out MS or ALS with this type exam, he felt strongly based on other patients that this was an orthopedic problem and not a neurological issue. He thinks a 10 minute procedure under light anesthetic, some shots into each shoulder and forcing a breakup in the stiffness via arm manipulation in each shoulder would do me wonders. I’m not ready for that, but I’m now anxiety free about this being a serious disease.

3) Fatigue and always feeling cold – I’m still on a daily chemo pill. My last chemo IV was August 18th (2.5 months ago). I really thought I should be feeling much better than I have been lately. While visiting with my family doctor he did some blood tests. He called and said one test showed a slow thyroid. My TSH (Thyroid Stimulating Hormone) was at 15. It should have been between .5 and 5. There is an inverse relationship between the count and a hyper versus slow thyroid. The higher the count, the slower the thyroid. I looked up “slow thyroid” on Google. The first sentence in the first site I visited said the primary symptoms of a slow thyroid were fatigue and feeling cold. I began a thyroid replacement medicine yesterday. They say it could take a few weeks for it to kick in. But, I’m no longer anxious about these symptoms. This is a very plausible explanation. One other point on this issue. When I received radiation treatment in mid 2005, my radiologist said that the radiation could actually cause thyroid problems and possibly even thyroid cancer 20 years down the road. At the time, I understood the risks and went forward with the treatment plan.

4) An acute pain in my jaw – I visited a local ear, nose, and throat doctor referred to me by my family doctor. Although my care at MD Anderson is superb, I wanted a really fresh set of eyes on this and a few others facial pain issues. After listening to me describe my symptoms, he described TMJ. TMJ is basically a facial muscle pain that can bring on the exact pain I was feeling. It is caused by trauma to the jaw which could be the result of an accident or surgery. We also talked about a way to address chronic pain left over from my July 2006 surgery. It is a nerve blocker medicine. If this nerve blocker medicine works I could then begin reducing and maybe even eliminating some of the stronger pain medicines that I take daily. I began this new medicine today. It too will take a few weeks to figure out if it works. Again, with a plausible explanation for the acute pain, my anxiety level is far reduced.

Here are the lessons to take away from the above. Break the problem down, address each methodically, seek appropriate specialists, and be proactive. I can’t tell you that there is not something seriously wrong with me. But today, I feel like a real weight has been lifted off of me for the first time in over 3.5 years. I don’t know how long this optimism will last, but it is so very welcome. I’m looking forward to the physical results of these new drugs over the next few weeks.

I hope this was helpful. That’s it for now. Thanks for checking in and take care of yourself.

Friday, October 17, 2008

Scan Results

I’ll make this brief. The scan results for both my chest and head & neck showed no evidence of cancer. My next appointment will be in 4 to 6 weeks for a follow up. The last detectable cancer was removed from my body surgically on October 18 2007. That means I’m half way (1 year) through a period of “no evidence of disease.” If/when I hit the two year mark at this time next year without a recurrence, it will mean that I’m in remission. I think this is a great thing. But, as Gust Avrakotos (played by Philip Seymour Hoffman) in Charlie Wilson’s War said of the Zen master's statement, “we’ll see.” I’m just recently beginning to think longer term. More on this later as my thoughts and plans crystallize.

That’s it for now. Thanks for checking in and take care of yourself.

Thursday, October 16, 2008

Scan Day is Over

Hi. Another day, another scan. Yesterday went well from a timing standpoint. I left the house at 5:45 AM and beat most of the downtown Houston traffic. I had my blood drawn at 6:45 AM, a chest x-ray at 6:55 AM, and CT scans of the chest and head & neck (H&N) at 8:00 AM. The scan ended at about 8:30 AM. I then checked in for my clinic visit with my oncologist. At 9:30 AM my vital signs were taken and at 11:00 AM I saw my doctor. The preliminary scan from my chest CT was negative for disease. By preliminary, this means my oncologist’s interpretation, but not the radiologist review and sign-off. My oncologist did not feel qualified to give me a preliminary interpretation on the H&N scan. With the scar tissue from all the surgeries, he wants to leave that review up to the professional, the radiologist. The physical exam was clean; he thought I looked great. Here’s my point. Although scan day is over, it will be a day or two or three until the scan results are in. I’m mildly apprehensive and will bide my time until the news from my scan results are communicated to me. When that happens, I’ll share them on this forum.

Regarding the insurance issue presented in my prior posting, my doctor readily agreed to write an email to my insurance company articulating why this drug regimen (Avastin), which my insurance company denied covering for future use, should be covered. He hopes to send me that email within the next few days. The more I research this issue, the more strongly I feel that what the insurance company did was a direct breach of contract. I plan on submitting my own research along with my doctor’s assessment to my insurance company next week. This is the last step in the appeals process before civil litigation can begin. Depending on my insurance company's response, I'm reluctantly prepared to head down that road. Barack Obama has mentioned a few times how he saw his mom fighting with her insurance company while she lay dying in bed of cancer. I now know how she felt. Fortunately, I’m in better health than she was when this dispute happened and therefore have the strength and resources to fight it. But, it does raise a lot of ethical questions about insurance companies, drug prices, and even how much in dollar terms one’s life is worth. Because, in the end, it is not really about right and wrong, it is all about the money. And, in these tough economic times, who isn’t looking at their bottom line.

That’s it for now. Thanks for checking in and take care of yourself.

Saturday, October 11, 2008

Scan Day and Insurance Issue Continued

It’s almost that time again. I get a new scan this coming Wednesday on 10/15/08. It will be a CT scan of the head and neck using contrast. I’ll also get blood work and a chest x-ray. My tests will be followed by a clinic visit with my oncologist (hopefully he’ll have some preliminary good news from my various tests) and then a visit with the Supportive Care unit. It’s going to be a very very long day. I have a few new ailments which are bugging me. My vision has changed and I have a bump on my finger. Without cancer, both of these would be totally trivial. A visit to an eye doctor and my family physician would more than likely alleviate any concern. But, with cancer, every ailment, no matter how remote or trivial, takes on a greater magnitude of anxiety.

Other than my tests and clinic visit, I’m going to try and enlist my oncologist’s support to help fight my insurance company. Although the insurance company did the right thing by paying for all past chemo treatments, they did the wrong thing by denying payment for future use of my most recent chemo regimen. Here’s the problem. Chemo drugs are approved by the FDA for specific cancers. The drug companies target the common cancers because a drug which helps fight lung cancer (215,000 new cases per year) for example will have more customers than for non-common cancers. “Common” cancers are defined by the American Cancer Society as cancers which have 35,000 or more new cases per year. There are 13 of them (see reference 1 below). Head and Neck (H&N) cancer is not one of the 13. Since H&N cancer is not high on the cancer hit list, the number of drugs actually approved for its treatment is limited. However, once a drug hits the market (i.e., it has been approved by the FDA), doctors have a fairly high degree of discretion in prescribing that drug to treat other types of disease. Many of the professional medical people with whom I talk believe that H&N cancer cells behave in a similar fashion to those of lung cancer cells. So, when they exhaust their use of cancer drugs approved for H&N cancers, they may turn to lung cancer drugs. This is considered off label drug use. Drug companies are not allowed by law to market drugs for off label use, but doctors are allowed to use them for off label use when they believe they are medically necessary. That is what my doctor did for me back in December of 2007. But, my insurance company decided unilaterally to put a policy in place on 7/15/08 that made the use of this particular drug, Avastin, no longer reimbursable for off label use. What this means is that someone who has never met me and has only a superficial knowledge of my case is denying payment for future treatment when the chief of Head and Neck Oncology at one of the best cancer hospitals in the world has determined that this drug is medically necessary to treat my disease. The insurance company knows that research and drug funding for H&N cancers are minuscule when compared to the common cancers and that proving that a cancer treatment is useful for a specific cancer is a very expensive proposition. So, since my insurance company’s unilateral decision may have an impact on my future treatment and literally my life, I’m going to take my case to my oncologist and see if he will assist me in helping the insurance company see this situation from my perspective. My insurance has been good to me up until this point and I’m not out to make a national issue out of this. But, remember, this could happen to you. You’ve worked many years, you’ve paid insurance during all those many years and one day your insurance company says… you’re not covered even though your health plan documents say you are and your highly qualified medical professionals say this is your best chance at survival. This is scary stuff folks and should be taken seriously. On top of all this, I don't want to waste my oncologist's time with my insurance issues. I would much rather see him curing cancer. If anyone out there has any tips for me in this situation, please post them or send them my way.

That’s it for today. I’ll let you all know the scan results as soon as they have been finalized. Thanks for checking in and take care of yourself.