First of all… my sincerest apology for waiting so long to update this journal. It has been an extremely heart wrenching few months. I have not been able to think clearly nor to write anything about what has occurred in my life so far this year because the biggest and best part of my soul has been taken from me.
How do you start writing about something so deeply personal that you can’t begin to gather the thoughts that might in some strange way… explain how you feel? Isn’t that what a journal is supposed to do… explain what’s going on in one’s life?
I’ve attempted to leave those I care very deeply about out of this journal all together. After all, I started this writing in order to document my journey through time and space while dealing with various stages of cancer with heart disease as a complicating factor. I didn’t want to infiltrate the privacy of those whom I care so much about. However… I must say here that my whole life changed forever in the wee hours of the morning of April 3rd… I lost the love of my life… the best friend I could have ever dreamed of… the one who “always” stood by my side, the one who showed me day after day after day… what love really is. After her long struggle and suffering in an attempt to just… breathe… the world lost a beautiful part of itself. She showed me what a compassionate, caring human being is all about. She made me a far better person than I ever was or ever could have been without her. She taught me that we are all ‘one’ in this world and if everyone would just realize that… our world would be a much more beautiful and peaceful place to dwell. I will never be the same here without her. Life can sometimes be quite short… or so it seems… but love… well… love is forever.
Yes… to answer what some of you are asking… she also had lung cancer… as well as additional serious pulmonary diseases and a very rare autoimmune muscle and skin disease. She was already in a serious state of weakness. She really didn’t stand a chance in her attempt to survive cancer. But, one thing I heard straight from a doctor’s mouth was this… “the chemo is what destroyed her lungs.” I suppose he was perhaps just thinking out loud and didn’t really intend to say those words in front of anyone else… but I believe that to be the truth. Please… if you find yourself in a similar situation of needing chemo… think about it very, very seriously… ask questions… find out about options… and if you are already in a weakened state of being…that chemo crap can and will kill you.
Sorry… I had to express my true state of mind before bringing you up to date on myself… which seems so trivial at this point. Ironic, isn’t it… that I have wandered these pages for about six years… battling cancer… and yet… the love of my life passes before me? She always said that she wasn’t going to stay here without me… and so… she didn’t.
I will tell you things in this post that perhaps should not be written or spoken to certain people, but I must keep this journal honest and express my deepest and truest feelings at this point of my journey.
I postponed my latest treatment because of the stress and distress that was going on when it was scheduled a couple of weeks ago. I postponed a CT scan for the same reasons. I was supposed to have the scan to see if the immunotherapy was working. Since I already had a fairly good idea that the treatments were not working, I wasn’t much concerned about the scan or the treatment. The pain level that I have been experiencing for many weeks now, continues to worsen. The docs and nurses all have the nerve to ask me to put a value of zero to ten on that pain. What I want to tell them is that the pain has reached the level that I might just pull their fucking heads off and stick them up their asses if they ask me again to put a number value on the pain. They are the ones that have told me over and over again that advanced stages of lung cancer are extremely painful.
Well… I’m there.
So… last Monday I went to have the CT scan and for blood work to precede my treatment scheduled for Tuesday morning. On Tuesday I had an appointment with the oncology doc before treatment time to discuss the results of the scan.
Her first words… “How are you feeling?” What? How am I feeling? Really? I’m in excruciating pain… I’m coughing up blood… I look like a starving human being from a third world country… I’m too weak to even do simple house work most of the time… and I just lost the love of my life… you already knew all of this… and you ask… “How are you feeling?” What I wanted to say was… ‘come home with me and spend a couple of days inside my life doc… I don’t think you’ll ever need to ask me that again.’
I knew the treatments weren’t working because of the increased pain level. Trust me… I’ve endured a lot of pain in my life but this is the greatest physical pain I have ever experienced. Mainly located in the right upper side of the rib cage… from about an inch below the arm, extending about seven inches down the right side is the worst of the pain. However, that pain radiates around to the back beneath the shoulder blade and around the front to the sternum.
I had told those around me that it felt like the tumors were growing into the rib cage. As it turns out… they are.
Following the short discussion of ‘how I felt’… the doc said… “Your scan was not good. The medication is not working. The tumors have increased in size… they have infiltrated the right side of your rib cage. That’s why your pain is so severe.” I asked, “So… where do we go from here?” She replied that we could do chemo… (using the exact same drugs that just finished destroying the love of my life)… try to find another immunotherapy drug that might slow the progress of the cancer… or hospice.
Hospice… Hmmm… so… these are my choices… I just smiled. She smiled back and we both knew what my answer was most likely going to be. She told me to think about it and to call her next week and let her know my decision. She then added… if you decide hospice, I will get things set up for you.
How about this doc… I’d rather die against the curb, homeless under a bridge than to go to hospice. Yes… those of you thinking that I am a bit bitter and opinionated are exactly correct in your assumptions. I know that it may truly become a necessity and I will have no other choice. I’m getting very close to that point in time. Everything I do… hurts. I hurt 24 hours a day every day. It’s gotten very, very old. I’ve finally reached that point where we as human beings… just don’t have the will to fight it any more. They’ve showered me with opioids… which I truly despise, but evidently… they are the drugs of choice by the health care profession. I’ve tried everything they’ve sent me… none of it so far has worked to even lessen the pain to a tolerable level. I received a new prescription a few days ago, but I have felt too weak and nauseated to even try it. I must confess that I have tried medical marijuana recently with the approval of all my current docs. Some strains I have tried don’t help in any way… some make me too sleepy to function in any capacity… but I have found a couple of strains that have actually given me some sort of relief. They relax my body (which always helps at least a little to ease pain) and relax my mind to the point where I almost….. “Almost”….. don’t give a shit.
Here’s the brief summary of the scan:
Large right hilar mass significantly compressing the right lower lobe pulmonary artery at the hilum as well as compressing the pulmonary artery of the right middle lobe.
Multiple calcified granuloma in the spleen.
Significant mass progression since the PET scan.
No definite hepatic mass.
Metastatic involvement of the lateral right fourth rib and lateral right fifth rib with adjacent chest wall mass.
Calcified granuloma medial left lung base with the left lung otherwise clear.
Progressive nodular areas in the periphery of the right mid and lower lung.
Degenerative changes lower cervical spine.
There it is… in black and white. Not a pretty picture. Not a pretty prognosis.
So… for this moment… I have chosen to procrastinate. Check out what home hospice has to offer that the VA or Medicare will cover at 100%… I’ll be sure and let you know on that one. I will have to phone my oncologist and inform her of my current… perhaps momentary decision. I will have to call my pulmonary doc and let her know what I’ve decided about her suggestion… she wants to do a bronchoscopy to determine if the bleeding is coming from the tumor pressing against the wind pipe and possibly remove enough of it to stop the bleeding. Otherwise… it will continue to get worse. However… that procedure does nothing to stop the cancer and from all that I have read about that type procedure… it can cause the cancer to spread even more profusely.
Where I go from here… well… it’s very uncertain in this moment, but then… all of life seems to be a bit uncertain.
A most beautiful day to you all. Stay well!