Follow up with Doc – April 2019

Hmmm…

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.”

Wait……………… What?……………..

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…

Hmmm…

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.” 

Sad cat 3

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.

Michael33 

5 thoughts on “Follow up with Doc – April 2019

  1. Michael, you keep journaling away, about anything and everything you want and need to. Writing is good for the soul. As for the bills, I understand. We have them, too. Have you contacted the offices and asked for charity care? There are some guidelines that have to be followed, but I doubt you’re not a candidate. Call your local hospital. Even the VA should have info on it. Take care, my friend. You’re in my prayers. xoxo

    Like

  2. Yes yes yes. Hope. It’s one thing we metsers cannot lose. Please know there’s copay help out there and if you live near a teaching hospital they will usually write off the 20%. I’m in your financial shoes and am stuck living in the Bay Area of California which is so bloody expensive it blows my mind. There’s a charity called Patient Advocacy Network, and the American Cancer Society has a ton of info on help with copays, financial assistance on day to day living expenses, and you could also seek out a medical trial through the NIH (nih.gov). I have Medicare and bought decent part D this year but last year I wound up in the hospital because I couldn’t pay for the 18k a month chemotherapy after Silverscript dropped me for non payment which was impossible because it was direct withdrawn before I ever saw the rest of my social security. God, what a nightmare. It’s like answering the question about your pain on a scale of 1-10 – which pain? Where? Which day? Now or last week? Compared to what!?!

    Like

    • Good morning. Yes… we must hold on to hope or we fall into a place we do not want to be.

      Honestly… I’ve been totally unable to find any assistance anywhere with copays. The nearest teaching hospital is about 180 miles away and I am too I’ll to travel along with having obligations I cannot avoid.

      I have applied for medical trials but am always turned away due to the additional problem of severe heart disease. They don’t seem to want any variables that might distort their statistics. I obtain my medications through the VA which lowered their income levels for no copay meds below the average social security check… which cut me out of that part. They are still cheaper on most outside sources but I take a lot of medication and it gets really expensive very fast.

      I think that when we start costing the insurance companies too much money… they look for reasons to drop us or just make one up, which is what is sounds like they must have done in your case with Silverscript. United Health Care did that to my sister in law because her cancer treatments were getting far too expensive. She… like many… finally just gave up trying to deal with it. Sad that they can get away with that kind of crap. I’m so sorry you had to deal with something that ridiculous while you were just doing what needed to be done in an attempt to keep you on this earth. They should be ashamed… but we know that they are not. They just want to save that dollar and stick in the… ummm… pocket of the CEO’s.

      On the pain scale… I usually just throw my hands up… sometimes I laugh which usually just makes the nurse or doc a bit angry… but really… how stupid a question is that… and to think… our dear government requires them to ask. Really?

      I’ve so enjoyed reading your comments Illene and thank you with all my heart for the conversation.

      It’s Tuesday… a wonderful day of the week… may yours be most beautiful.

      Michael

      Liked by 1 person

  3. Hi, Michael. I haven’t had much time for blogging in, I don’t know, maybe a couple of years. But, I woke up this morning thinking of you and decided to make time to check on your blog and see your latest reports. Though I have never met you and really know little about you, your blog touched my heart several years ago when I discovered it; so you’ve been in my thoughts and prayers ever since. I hope you will never lose the ray of hope and tiny moments of joy that can brighten your day. There are no words or deeds I can do to help you (if you think of something, please let me know!), but I do wish you the best. Your example of endurance while striving to keep positive leaves an encouraging example. Thanks again for sharing your story.

    Liked by 1 person

    • Good morning Miss Merry Hearts… Oh… but there is in deed words and deeds that you can do to help me… like the time you took to leave these words that have so brightened my day… like you have done so many times before… and I thank you with my own merry heart.
      Wishing you a most beautiful day
      Michael

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s