Friday, June 14, 2013

Another Challenge

So the CT was done last Friday, June 7th.  Getting results back in Eugene is not quite as efficient as getting them at Mayo.  It took several calls being the "squeaky wheel", but we finally got the results to a lung specialist and they got me in yesterday.  The bad news is he's about 90 % sure I have lung cancer.  As he was going on about treatment and additional tests and removing part of my lung, I was thrown back to four years ago when Dr. Zeldenrust told me about my amyloid.  He too launched right in to discussions about transplants, and food restrictions and I was sitting there still trying to process the diagnosis.  You sit there in disbelief and it is so hard to take in what they are saying to you.

I liked the Dr. a lot.  He was vey straight forward and didn't mind repeating things several times for me.  Had I known I was going to get a diagnosis during that appointment I wouldn't have gone in alone.  Another set of ears would have been helpful.   The one thing that was very confusing to him is that I am not and never was a smoker, nor have I been around much second hand smoke.  If so, I think he would have finalized my diagnosis right then.  As it is, he is ordering a PET scan in hopes that it might not be a malignancy, and to see if it could have come from some other source of cancer origination in my body.  If that test his positive he is going to do a "navigational" biopsy.  Apparently the growth is in an awkward spot to get at for the usual biopsy method, so they will have to put me under.  I it is for sure cancer, he is pretty sure it is stage one, and the treatment is to remove the lower 1/3 of my right lung.

Wow.  One deadly disease is not enough?  My concern is if I can whether another major surgery?  I'm already pretty weak and down about 35 lbs.  When I had the transplant I wasn't too worried because I was still in pretty good shape.  Now?  Not so much.  He is talking 4-6 weeks recovery time.  I can barely keep my muscles going now.  I work out as much as I can, but the atrophy continues.  How weak will my legs be if I'm down for four weeks?  Not to mention the eating and GI problems I have to deal with every day.  Well, one step at a time.  Next up, PET scan.  Maybe I'll beat the odds and he'll be wrong about the cancer.  In the interim I think I''ll explore non-surgical options to cancer and see what my alternatives are.

Saturday, June 1, 2013

Latest results

So I wrapped up two days of tests in Arizona with mostly good news.  The neuropathy which I perceive to be worse is consistent with a slight worsening of nerve conductivity based upon my EMG test.  That was not unexpected.  The cardiac involvement does appear to have progressed, and that was a pleasant surprise.  I thought I was going to get out the door at that point with an overall good checkup, but then was told they had found a "spot" on my right lung that wasn't there a year ago.  Nothing was discussed about what it might be.  The next step is just to get more information.  So I will be getting a chest CT when I get back to Eugene.  A little bit of investigation on the internet indicates these are often benign nodes or some scarring from some infection.  We'll see.

The question to contemplate for next year is whether to go to Scottsdale or back to Rochester for my annual visit.  Scottsdale actually exceeded my expectations.  The care and competency of the Dr.s and staff was comparable.  But as I indicated previously, its on such a smaller scale.  It was so much easier to get around to the various appointments as they were in such closer proximity to each other.  I know that if it were to involve any type of long term stay I'd go back to Rochester.  The Gift of Life House would play a big part in that choice.  But if its only for a few days, you don't really need the same type of support in your living arrangement.  And if only for a few days, you won't really make those type of connections anyway.  That will be a decision for next spring.  Well, on to the next challenge next week to see what the CT has to show me.