June 26, 2009
Just wanted to let everyone know that Dave is progressing thru his "therapy" and seems to be doing okay with it. The brain tumor appears to be benign but it is being watched and scanned every 3 months to check for changes. So far, there have been none, so that is a weight off for the time being.
While I have made it seem a bit like everything is going fine, I don't want people to think that this is a simple or curable cancer. Dave's treatment is going as well as could be expected in a situation like this. This cancer is considered a relatively rare cancer, although the increase in cases is changing that, alaming as that sounds. It is also one of the hardest to treat, there is NO cure and Dave is in Stage IV. Right now, we are dealing with things that I never thought I would have to deal with. I am tired, worried and scared half out of my wits. Everytime we go in for a visit to the doctor, it seems like there is a new problem we have to deal with.
We don't know if the Sutent is working yet because he hasn't been in for the scans to determine that. That comes in about 4 weeks. It hasn't been long enough to take a look yet. He has had nothing major in the way of side effects, but most of the bad ones are cumulative and come after taking this substance over a long period of time, so that is yet another "wait and see". Personally I have high hopes.
Dave is having to take more tests than a school student. Some are like exams, for which we have lots of time to prepare and some are like pop quizzes. He has to have an echo-cardiogram every 8-10 weeks, he is fatigued and has some problems with nosebleeds if he over exerts himself but that could be from something else. We go in every 3 weeks for a monitoring of his other vitals...weight, blood pressure, etc. Yesterday he had an infusion of Zometa, to strengthen his bones against any invasion by the RCC and to help with the healing of his back surgery. It has made him really sick and he is running a fever, but that is supposed to be short lived....48 hours or less. His hair and beard are definitely turning whiter now and I imagine he will look like a really skinny Colonel Sanders in a couple of months, as that is one of the side effects (hair color change, not the Colonel Sanders part). He seems to be getting stronger and feeling better but this isn't a bad cold he is recovering from. The "getting stronger and feeling better " needs to be taken in context.
We have no insurance coverage for any cancer treatment right now (he was cancelled after his first round with this cancer back in 2005...we have lived with that reality since then) and we have doctor's bills well into 6 figures. The medication that Dave is on costs $100 per day. We received some assistance on the first month from the clinical trial he is participating in but we had no idea how we are going to cover the next month's supply. It will just about wipe out our entire savings account to pay for it out of our pocket. So far, Dave has seen 8 different physicians, all specialists in oncology, radiation therapy or immunology, had major surgery, so many MRIs and scans, I have lost count, not to mention the cost of the meds.
We have applied for every kind of medical assistance around and so far, we have not met most of the criteria....no dependent kids, too many assets (anything over $3000 is considered too high....), not young enough or not old enough. The state of NC has declared that Dave is, indeed, disabled, but not eligible for most of the disability assistance for one silly reason or another. Every rejection letter we get is ended with the phrase "If you feel this decision is in error..." and we start the process all over again. We finally were able to get insurance coverage for Dave out of the NC High Risk insurance pool and the premiums are not as steep ($400 per mo as opposed to $1200 for private insurance). Problem with that is that nothing pre-existing is covered until sometime in late October and nothing retroactively. We are paying towards all of these bills to make sure that he continues to have access to medical care so there is not a lot of disposable income around here...good thing we grow food.
The sole source of income we have is this farm. I have been managing things for the entire 2009 season so far. I have no choice but I am no Farmer Dave. He is recently getting to the point where he can actively participate and is doing so, but he is the heart and soul of this farm and it has suffered from his not being more part of it this year. All the rain we have had has not made things easy either and we are a bit behind, but things are finally coming together, now that we have our captain back. There is no way for either of us to get an outside job because I have to take care of everything from paying the bills and feeding chickens to going to markets. Obviously, Dave can't get a job either. I truly don't believe I could be working any harder.
We appreciate all the concern, thoughts, prayers and good energies sent our way. We couldn't do this alone.
“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.”
