No post since June 14?  I've been delinquent.  Anyway, had the PET scan which couldn't rule out cancer, so I ended up going in for a biopsy of the lung in early July and NO CANCER!  Nice.  Turns out it is a fungal infection in my lung.  Sounds like its pretty treatable, but I'll be on a new prescription for about six months to treat it.  I have about two months of it left to go and it doesn't seem to be causing any real side effects.

I've reduced myself to 70% time at work.  It is really starting to take a toll on me, but once I'm there I still like my job, and I love my co-workers and partners.  I am determined to keep working as long as I can, and as long as I can perform my work properly.  So far that has not been a problem.

My symptoms continue to slowly worsen.  My weight is down to 125 lbs, primarily due to muscle atrophy from the nerve damage.  I look at myself in the mirror and hardly recognize the reflection ay more.   I made it to the Duck game again last week but it is getting pretty difficult getting in and out of the stadium.   The ongoing challenge has been to let go of identifying myself by my physical appearance ad abilities.  Although my body shell continues to diminish, I remain the same person inside.  Who I AM has not changed.

My youngest son, Jake, moved back home with us in August for the next year.  His energy and vitality are infectious, and it has been a real boost for both Jeanine and I.  As always I am looking forward to the upcoming holidays--its my favorite time of the year.  Blessings to all, Rick

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.

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.

Hello Scottsdale

Well, here I am back for my annual visit to Mayo, but with a twist this time.  I am at the Scottsdale campus rather than in Rochester.  A number of events came together to bring me and my family here for a vacation, and since the Mayo Clinic Scottsdale Campus is only about 10 minutes from where we are staying, it made sense to have my check-up here instead of Minnesota this year.  I must say, it certainly feels different.  It is a fraction of the size of the Rochester facility, but there is still that safe and comforting feeling that comes with being at one of the greatest health care facilities in the world.

My hopes and expectations are not too high for my tests this year.  My neuropathy has progressed noticeably over the past year.  I guess that is fairly common with most amyloid patients post-transplant with a variant other than the Val Met 30 form of amyloid.  I just finished with one of the nerve tests, an EMG, where they give your nerves electric shocks of increasing strength to measure how sensation is registering up and down the nerve.  The shocks that once had my feet and legs kicking are now just minimal sensations that I can barely notice over the course of the exam.  I had an echocardiogram earlier to check heart involvement, and those results  should come back tomorrow.

I am awaiting one more test today, then I'll wrap things up tomorrow. I am in the patient library here at the Scottsdale Clinic.  In the Concourse behind me  is a pianist playing Amazing Grace.  That song always reminds me of my mom, and it has always comforted me.  I continue to battle the progression of this disease the best I can through exercise, naturopathic remedies and acupuncture, but I have certainly had to embrace the lesson of "acceptence" as this disease has progressed despite all of my efforts.  My faith and connection to Spirit remains unshaken, as I have to remind myself again and again that I am a spiritual being having a human experience.  That I am not my body, and despite its continuous decline, who I am has not changed.  It is sometimes hard to recognize myself in the mirror these days as I have become so thin and emaciated, but the essence of who I am remains untouched.  I remain hopeful that a cure for this disease is on the horizon, and until then try to get the most out of each day.  I had a wonderful trip to the Grand Canyon with Jeanine and Jake last Saturday, and Monday was able to play some golf with Sam at the TPC Stadium Course.  It has been a great week as we have enjoyed staying at the home of our friends Stan and Julie Picket here in Scottsdale.  Their generosity is incredible, and it has been a wonderful gift to me and my family to be able to have this time together.

Going to close for now.  I will miss not seeing my friends in Minnesota this year as well as the hospiotalioty of the Gift of Life House.  Hope this finds everyone out there doing well.  Rick