Well… the appointment with the doc went nothing like I expected. I guess I’m a bit stunned… or disillusioned… disgusted… frustrated… perhaps “discouraged” – would best describe how I really feel.
Although… after receiving radiation treatments… both tumors from December are still present in approximately the same size they were then… with hypermetabolic activity (although the SUV has decreased)… there are three “new” hypermetabolic active nodules in the lower lining of the lung that have developed recently… one of the larger remaining tumors (the hilum area) still blocking airflow to the middle lobe, which is still collapsed, most likely in its entirety… still blocking off the lower lobe making it impossible for the fluid captured there to escape… and according to the doc… it seems there is “nothing that can be done at this time.”
Doc’s explanation was that I’ve received too much radiation in that same area and further radiation without more healing time could cause too much damage to the good parts… I suppose she is most concerned about the heart… or causing further collapse of the lung… or…
Maybe I’m looking at this with a slanted point of view, but how does one determine if possible damage from more radiation would be worse than what the tumors are going to do… like grow and metastasize to other areas… block off air flow completely to the entire lung… cause the lung to completely fill with fluid? I can think of a thousand more things that could happen if “nothing that can be done at this time” is the final answer.
The doc said to call her if my symptoms worsened. I told her I was coughing till I gag (sorry about that description)… coughed so hard at times I couldn’t stand… coughed myself into compete fatigue of the entire body… extreme lightheadedness… dizzy… sometimes nearly passing out… and yet… “call me if the symptoms worsen.”
I know that there will be those who advise me to seek a second opinion and that is something that I would like to consider and probably should do… but… those who suggest that, haven’t seen my current stack of medical bills. I’ve been wrestling cancer since the summer of 2013 when I was given a twenty percent chance of survival. The next session with metastatic cancer into the lung was a five percent chance and this last round the percentage of survival virtually disappeared altogether… and yet… here I am… beating the odds but not surviving the financial burdens of all the appointments, tests and treatments.
I suppose this isn’t the best time for me to go into a rant about the cost of health care in the United States, but I will say that it is utterly ridiculous. Now… they are proposing Medicare for all which may be a good thing for those who are relatively healthy… but for those of us who suffer from debilitating diseases… that remaining 20% of the cost is deadly. Some tests I must have are almost $7000… 20% of that takes a very big bite out of one’s social security check. When each treatment that you must have done to even hope for survival costs more than $1595 a day for several weeks… well… it doesn’t take a CPA to tell you that all you had saved is gone and your social security isn’t going to pay the bills. When you consider the fact that I’ve received more than 100 of those treatments… it’s fairly easy to figure that out.
One more thing that must be said here… every time I have turned to a nonprofit in search of some assistance… any kind of assistance… all I ever get back in return are emails asking me for donations……. Really? And I’ve already talked about how much assistance the wonderful Veteran’s Administration has to offer.
So… where does one draw the line… choosing whether or not to continue going deeper and deeper in debt in a continuous battle with metastatic cancer? Like the doc stated some time ago… “this is just the way it’s going to be.”
I know… this is a bit of a downer post for a site with the word “Hope” in the title… but this is ‘my’ journal about the trials and tribulations of an attempt to survive metastatic cancer. There is no loss of “Hope”. I’m just as hopeful as I’ve always been from the beginning of this journey… I’m just extremely discouraged in this moment. I’m still going to rise at 5a.m. to feed the kitties and to enjoy my morning coffee. I’m still going to share a smile with those whom I may encounter throughout the day… I’m still going to enjoy a gentle morning rain… the hues of dawn… the setting sun… and every bud that blooms within my view. I’m still going to enjoy writing poetry… writing in this journal… and reading every comment that others have to offer.
I’m ‘hope’-full that I discover a better frame of mind soon and do some additional writing in this journal that doesn’t cast such a dim light… Until then… may your days be most beautiful, healthy and happy.