Wednesday, 31 July 2013

It is the last day of July and I do not have a CT scan appointment.  I am not very happy about this at all.  I don't know what I will do tomorrow, but losing my cool is not on the menu.  Causing a ruckus and getting on with stuff is.  I have been sitting patiently since mid March with cancer in my lung.  Nothing has happened cancer therapy wise.  This is still semi ok.  The Dr. wanted to have a pic via CT of how the cancer is doing for end July.  That time frame suited his and my purposes vis a vis getting appropriate therapy going for the cancer and proceeding, finally, with the transplant application.  We are not really late, yet. Tomorrow we will be late.

I try to imagine explaining this blog to my father.  I often do that with questions that come up in my life.  This blog would have horrified him, at least initially.  Where we came from you did not discuss your personal issues with others, especially strangers.  You did not burden anyone other than your most immediate surrounding family with any of your health issues, and you tried to avoid discussion with them if you could.   That is the world I come from, a tough culture of strong people, old school, working people.  

I wonder, entirely too much I am sure, about what my friends and family make of this blog so far.  Throwing out my innermost thoughts for consideration, making obvious my many mortal character flaws and shabbily built intellectual foundations to strangers is one thing.  Doing it for people who know me now, or knew me then is far more scary.  That takes a big leap of faith.  Most people have an image of a person in their minds.  A snapshot.  Fixed.  Even if they know you now, they have this image in their minds.  It's natural.  You stay in each others lives, but you don't really follow all the details.  The image you have is the image you have.  

I have not done any of the things I should have done to plan for my death.  I should.  I will.  All the little things I should not leave to Nicole.

My breathing is bad now no matter how you want to look at it.  I am short of breath at rest all the time.  I keep moving all day.  Slow, slow laboured movement.  Everything controlled.  I stay as fit as I can.  It takes hours to do things that used to take me minutes.  I walk up and down those 12 stairs 20 times a day.  I laugh with Nicole and with the cats.  I Google + a lot on and off throughout the day and evening and that keeps my brain active.  I eat cannabis cookies all day long.  I struggle to breathe too much if I do not.  Cookies ease the tension, the stress of suffocating.  Suffocating sucks.

Monday, 22 July 2013

I think differently than I used to about myself.  Getting to a core understanding of what my motivations, catalysts and other unconscious issues are is a little less important than it has been through my life.  I spent a lifetime starring at my navel, looking inward.  The long search for the "why" about who and what I am will not come to a nice neat conclusion as I long dreamed it would. The point now, is to let go.  

Sunday, 21 July 2013

I saw The Dr. last Monday.  The Monday before, July 1 st, I had called and left a message asking The Dr. to send my pharmacy a script for prednisone.  He had given me a pred prescription at the end of May, with two repeats.  I had gone through those, and the pharmacist had extended me another.  The time between pred bursts had shrunk to just days and it was pointless to suffer needlessly. I wrote last time about seeing a rheumatologist to deal with osteo and rheumatoid issues and The Dr. was not aware I had, so I was rightly expecting resistance to my pred binge.  June called me on Wed July 3rd to tell me to come in to see The Dr. about The Prednisone Prescriptions.  You can tell when June is telling you something in code, giving you a heads up.

  My spirits, my mindset, frame of mind has not been as positive as it has been for the last year.  The last month specifically I had, began to doubt that I could ever have a transplant because I have cancer.  That doubt turned into a certainty as I researched deeper and found many jurisdictions where any type of cancer, anytime, cured or not would disqualify you for any kind of transplant.  The most liberal places allowed for it but only in situations where the patient had been cancer free for a period of five years.   I have been worried that I might fall into a depression.  Depression has been far away from me for a long time now, the better part of a decade.  I really do not want to experience that while either fighting for my life through a transplant or living a meaningful death if I am told I can't have one.  I think just recognizing the dangerous times and old feelings will be enough to avoid the blackness.  I hope.  I hope.

The visit with The Dr. was as positive as could be.  Having time to prepare meant I was able to ask my all of my questions.  I was a little worried that I would be negative with The Dr., difficult to deal with.  I was not and The Dr. was as forthright as I could have hoped.  He also had a lot of questions about what I was doing, how I was feeling, how much I was exercising and my state of mind.  We discussed prednisone, the pros and cons, the new meds from the rheumatologist that will counter the pred and my genetic predispositions.  I asked him straight up if having cancer precluded me from having a lung transplant here in Quebec.  The answer of course was not so simple, but it was honest and acceptable.  My cancer is small, slow, not virulent as these things go.  That is what The Dr. and his friends at the Jewish saw in April.  If that is what they see again when I have the CT scan ( not yet bloody scheduled!) in the next week or so then The Dr. says the following will take place;  I will start a cell level targeted nuclear medicine therapy at the Jewish, and, The Dr. will finally sign off on my lung transplant application at Notre Dame Hospital.  I think if I have those three things done in the next six weeks or so I will be satisfied.  The Dr. emphasized, again, that I have no surgical options for the cancer.  Nor do I have any surgical options, period.  We discussed the PFT test that I had last month at the Lakeshore.  Of course there was no miraculous increase in my capacities, that sort of shit does not happen in real life lung disease.  On a positive (?) note, the numbers continue to fall and my survival prognosis is firmly in the 50% 2 years, meaning that I have a 50% chance of being alive in 2 years.  You need that number or less for a transplant, so it does have a sunny side.    At the end of the discussion The Dr. and I, along with Nicole, decided that regular prednisone was worth a try.  15 mg daily.  I am a week in with that as of tomorrow and I feel very good.  

I will post this now.  More to come.