Friday, July 15, 2011

So we are headed home. We are currently in Minneapolis enjoying an incredible thunderstorm. We had planned to take the light rail downtown and walk around the river trails, but the weather doesn't seem to be cooperating. We are holed up for the time being with numerous families with little kids who have all ventured here for summer vacation at the Mall of America. I didn't realize that a mall could be a "destination". We did get over there for a while yesterday and it is pretty amazing with a huge amusement park set up in the middle. But I don't think it will be high on my list for a return visit any time soon.

My last test, an EMG, went ok. They set you up with these electric shocks up and down your legs and arms to see how the nervies are responing to and sending information. As I had assumed, things are still pretty dead from the knees down. It hasn't spread into the thighs or upper body. The tests measured about the same as a year ago, so that is good. The neurologist I met with later put me through a number of standard tests for strength, balance, response to heat and cold, etc, and again was about the same as last year. My hope had been for some improvement; my expectation was status quo and that is pretty much how it turned out. The neurologist said it can get better, so my job is to stay positive and keep working the legs as best I can, so I'll just keep on keeping on. The doctors explained why my balance is so difficult in certain situations like when I am standing still vs. when I am walking. It was suggested I get a cane for those occasions where I might be standing around a lot, so I guess that is now on my shopping list. Most of the time I won't have to have it with me. Maybe I'll use my 1 iron, I never could hit that club any way.

So we said our goodbyes to our new friends at the Gift of Life House. It seems like there were so many this time with such overwhelming challenges in front of them. Yet all were so upbeat and positive, it is inspiring just to meet these people. Jeanine and I have turned to a new chapter in this story. We both feel and said the same thing. We no longer are worried or are hearing that little voice in the back of our minds that this disease is going to kill me. We are convinced that it has stopped. After what is now four years of fear, uncertainty, and apprehension, we can finally move on. I will move on a little more slowly than I used to, but it gives me more time to stop, slow down, and look around at all there is around me: all of you out there, friends and family who have supported us, the beauty and magic around us each day--like this incredible storm I am watching right now. Take the time to appreciate it all each day. You never know when it can all be taken away.

So if you are reading this, do me a favor if you haven't done so already. Be an organ donor. It's important. There are people whose lives depend on it, literally. Remember, "Don't take your organs with you when you die, heaven knows we need them here on earth". Love to all, Rick

Tuesday, July 12, 2011

So now I know why I came back to Mayo: the people. And it is the people and the caregivers that will keep us coming back. When we were traveling back here I was thinking this is an awful long way to go and a lot of money to spend for a handful of tests I could probably get in Eugene and have forwarded to the doctors here at Mayo. And then you get here, and you meet the people and you hear their stories. You talk to the doctors who have all the time needed to sit and listen to your questions, address your concerns, and explain to you all you would ever want to know about this "insidious" disease. And you know this is where you need to be.
Once again it was an encounter on the porch that brought it all home to me. It began by talking to Richard and Sarah from Dallas, Texas. They have been here one year now. He has multiple myeloma with a lot of complications that are preventing him from doing his stem cell transplant. So they wait. People come, and people go, and they wait. They are truly in the moment each day. No anxiety, no bitterness. Just waiting for the time to come when they can harvest his stem cells and start the road to recovery, or alternatively, be told to go home because there is nothing more to be done.
As we spoke, out came Rita from Denver. Here husband Kirk, one of my new heroes, has familial amyloidosis like me. A kindred spirit--a brother. But they have been here one year, and one month ago he had his transplant: heart, liver and kidney all at the same time. Are you kidding me? Is that all you got ? I am flabbergasted by the magnitude of what he is going through. On the transplant train he is riding first class and I am sitting back in coach! Yet another reminder and lesson to me that there is always someone who has it worse than you. I had the pleasure of meeting and talking to him today. We kept it short because he was exhausted after a day of tests. But all appears to be well, and there is a good chance that they will get to go home in September. Overall his prognosis is very good, probably better than mine. For him, the affected organs are all removed, and he should be functioning as well as ever within a year.
For me it will be different. Or so they believe. As far as the transplant itself goes, the doctor gives me an A+. My rejection medication has been further reduced, and all is looking great. The amyloid doctor was less enthusiastic, lets call it a C+. The good news is that all indications are that the spread of the amyloid has stopped and he does not believe I am at further risk. On the other hand, he was very non-commital about the nerves improving and my impaired function being restored. But, and he was very emphatic, there is so much they don't know about this disease. My particular gene mutation, V32a, is a rare form and they have very little data about it. But there is hope that with time it can improve. So that's what Jeanine and I hold on to. We can be patient. And if it doesn't improve, if this is "as good as it gets", we can live with that. Who I am hasn't changed. What I can do in the physical world has been altered, but as I continue to learn, that really isn't what matters in the long run. Its a tough lesson to hold on to. It's easy to fall back into the mindset of focusing on what I can no longer do, instead of what I still get to do. So I am back here for a refresher course. And now I know we will keep coming back each year to Mayo for lessons about life. Be well, Rick

Monday, July 11, 2011

Mayo revisited

So we're back. Two years and counting. We got picked up in Minneapolis by our friends Scott and Gail that we met when we were here for our transplant. We were able to spend a day with them touring their home and stomping grounds in Maple Lake, MN. We had a great time catching up with them and getting a taste of how they live. The highlight had to be beers at the local legion club and getting to know the "regulars". Think of the bar as a dingy and divey Cheers, but with characters every bit as colorful as on the show.
We arrived Sunday afternoon at the Gift of Life House. There are actually two now, right across the street from each other. We are housed in the new one this time. It isn't quite as homey and intimate as the old one, but it is a lot more up to date. The rooms are bigger and nicer, there are beautiful gardens and fountains with more outdoor seating areas available.
But regardless of the amenities, it is the people housed here, and who work and volunteer here, that make it so special. You walk in the door, and you are immediatley bonding with people. There is no pretense, and very little small talk. Within minutes of meeting someone you are sharing each other's medical history and respective journies. I am once again struck by the realization that no matter how bad you believe your lot in life has become, there is always someone with even greater and more grave challenges.
The first couple we met, as we walked in the door no less, are from Corvallis. They have been here 10 months now, with her still at the top of the donor list, waiting for a lung transplant. A rare blood type and unique anti-bodies complication have made it very difficult to get a match. Another woman, Terri, told me of her sister, Summer, who is today on her 60th day in the hospital. Summer is a 33 year old single mother of 5 kids-the youngest is 4 years old. She has leukemia. She has had numerous complications since her marrow transplant, including being in a coma that lasted 3 weeks. Their other sister lives in Arizona, has 6 children of her own, and has taken in Summer's 5 as well while Terri attends to Summer here in Minnesota. So me? After that 30 minute re-introduction to life at the transplant house, I think I'm doing pretty good!
I actually had a couple of tests on my heart today to see if it has been affected by the amyloid proteins. I trust and remain hopeful that it has not. I have a whole battery of tests and visits tomorrow, so I should get some feedback by Tuesday afternoon or Wednesday. If all goes well we should be done Wednesday afternoon. There are some tests scheduled for Friday which we hope to move up earlier in the week, and if not, I think they can wait until next visit.
Things feel differently this time. I can't yet articulate it. Feeling like our visit may be so short-lived, there is not the same sense of belonging or connection that there was in the past. You almost feel guilty being one of the many who are just back for "check-ups". A couple of days in and out and your gone. Also, as I mentioned above, this house doesn't lend itself to being quite as intimate as the original Gift of Life House: a lot more spacious.
Anyway, going to close for now. Don't know if I have any readers left on this blog, but if so, I hope this finds you well. Cheers, Rick