Thursday, 25 April 2013

It has been a long, slow eight days since I had the PET scan.  I have spoken to the Dr.'s go to person, June several times since then.  On the day of the scan I gave her a heads up that the scan had been done and that results would be available two days later, a Friday.  I spoke to her then and I would have to wait until the next week, which is now this week.  An early Monday morning call to June had her assuring me that I was not being a pain in the ass at all, and that she would have me some kind of definitive answer as to when I could sit with the Dr. and get the results.  She asked if she could call me Russell.  I feel like I have my inside contact taking care of me.  June is very kind, sweet and very helpful and professional, above and beyond the call of duty.  I had my call back before lunch.  The Dr. will go to the Jewish General on Thursday or Friday to view my PET scan for himself.  The Dr. is an assistant professor at Mcgill as well as a practicing pneumologist affiliated with three hospitals that I know about.  I like him, the way he interacts with me and I have confidence in his judgement.  There are only certain days of the week I can get to him, and that is the way it is.  I will not get to see him before late next week.  It took me a day or so to process that.  If the PET scan had been alarming or obvious I would know by now.  So, I do not have cancer is still the reality of the day until further notice, and, I really feel that way.  I don't dwell on it very much.  No dark thoughts or dreams of any kind.    I am just a little bit proud of myself for how I have been handling all this, over the last couple of years.  Self inflicted wounds.  Not so proud of that.  It balances out.

Thursday, 18 April 2013

I had the PET scan at the Jewish General Hospital in Montreal.  Of course I have no inkling of the results.  I was told after the test that the Dr. could have access to the results 48 hours after the test was completed.  When I got home I called the Dr.'s office and let them know that the test was done.  The Dr. will be back in the office on Monday, so it will probably be later next week before I know my fate, maybe.  It is a real comfort to know I can call my Dr. and talk to a person who knows me and cares about me.  I am told there are a lot of false positives and to be prepared for that.  The staff that I encountered at the Jewish were first class, especially Marie Claude who made the experience a positive one.  Last night I did not sleep very well.  My mind wanted to deal with the what if's of me having cancer, now.  So, I let it happen and thought about it.  Today, I am back to being cancer free and on track for a lung transplant until something bigger, stronger and more determined than me comes along.  Waiting still sucks.

Tuesday, 16 April 2013

Tomorrow I have the PET scan, finally.  It has been a very long nine days since the Dr. said the big bad "C" word.  What has made waiting difficult is not knowing where I am going.  I want to know where I am going.  I am ready to fight to live longer.  So, what am I going to be fighting?  A few more days, a week perhaps, and I will know, and I can start taking aim at something.  This waiting and not knowing where I am going, sucks.

Wednesday, 10 April 2013

I feel anxious today.  Over the last couple of years I learned to cope well with my progressive lung disease.  I was fortunate enough to participate in an excellent pulmonary rehab program, twice even, at Mount Sinai Hospital.  The program teaches people coping skills for living well with lung diseases.  They are brilliant at what they do.  I learned how to control my breathing in all kinds of situations, how to stay fit, how to keep stress at bay.  You also learn how to manage your individualized action plan.  The plan provides you with the antibiotics and other drugs you need to fight off infections and other problems, when you need them, without having to make an appointment to see the doctor.  This saves time and keeps people from having to go to the hospital needlessly.

I was comfortable with my life.  I knew where my illness was going to take me but I felt good all in all.  My wife and I were enjoying every moment together, fully.

A little over a month ago a question I asked about radical treatment options led to the discovery that I was indeed a potential candidate for lung transplant surgery.  My reading and research over the last couple of years had led me to believe that someone with emphysema could not qualify for a lung transplant.  Well, that was incorrect and all of a sudden I had hope of a longer life, an active life.   I embraced the idea wholeheartedly as did Nicole, her a little quicker than I.  It took her a millisecond to decide a potential miracle was at hand and she wanted to grab it.   I needed a day to think about all of the possible known consequences before I was sure it was what I wanted to do, try to do.

Somewhere between April 22nd and April 26th I will know the results of the PET scan I am going to have on April 17.  I will know if I am going to Notre Dame Hospital to try to get new lungs or to the Jewish General Hospital for lung cancer treatment.

For the next couple of weeks I will practice the breathing exercises, nibble the medicinal cookies, play with my two kittens, hug Nicole often and hang out on google + and with the help of Alice, learn how to blog.

Tuesday, 9 April 2013

I thought I would wait until I heard from transplant clinic at Notre Dame Hospital before making another post.  It was my intention to start my back story once I was involved with the transplant program evaluation of my suitability as a candidate.  I had a CT scan on March 8th.  Between that date and last Tuesday I waited to hear from either my Pneumologist or the transplant centre.  I had been feeling ok since I last saw the Dr.  but by last Tuesday I was feeling dreadful.  I called his office and they got me started on prednisone right away.  I started to feel better almost right away.
 The Dr. called for me to come and see him on Monday April 8th.  The news is a bump in the road, at least.  I have a polyp showing on the CT scan.  So, I am to have a PET scan next week, April 17th. I  hope I am cancer free, hell, who doesn't.  I think in some places any cancers in your history will make you unsuitable for transplant surgery.  I sure hope not.  One thing I did learn is that I would not survive any other lung surgery besides a lung transplant.  That would limit treatment options.   A bump in the road.