Saturday, August 30, 2008

Probably My Last Post Before the Transplant

The chicken Hawk and I made the long trek back to Palo Alto and the Stanford Cancer Center to do the final checkup before we do the last step in the process that I have been working on all summer: the actual transplant. Thus far the process has been much harder on me than it is on most people. I have ended up in the hospital and feeling really sick for the two rounds of apherisis (removing the stem cells that they will put back into me next week.) Most people do all of that as out patients but I have not responded as well.

However, on this last cycle we have figured out why that is. My kidneys are much more damaged than most people. That causes me to have sever electrolyte shortages. The symptoms of these electrolyte shortages look a lot like a violent reaction to chemotherapy; extended nausea, diarrhea and general sickness. This imbalance is called Fanconi Syndrome. Since the last time I was in the hospital we have learned how to control the symptoms of the fanconi syndrome really well with me taking about 70 electrolyte tablets a day. As a result I have been feeling better and better since the last time I was in the hospital.

So we went to Stanford, I did a series of blood tests, a chest X-Ray, and an EKG. All of those as well as several test that Stanford asked me to get through Kaiser including a 24 hour urine test and yet another Bone Marrow biopsy (I hate those) show that my Fanconi Syndrome has improved and that I am doing better.

After doing all the tests we met with Dr. Miklos, my BMT doctor. Both the chickenhawk and I were expecting a surprise from him, he always seems to have a surprise for us, this time he didn't disappoint. He told me that based on my tests, I still qualified for the procedure, however, he wanted to inform me that he was very concerned that it was going to be particularly hard on me with increased danger to my recovery. His opinion was based on my performance thus far. He reminded me that I do not have to continue with the treatment, but...

BUT now that I have developed a blood clot in my leg, I am no longer eligible for the most popular other medicines that they would treat me with. There is basically only one medicine left that I can take that is safe for people with clots. Furthermore, when I start the BMT I will have to go off of the anti clotting medicine that I'm on now, so I have an increased risk of a pulmonary embolism (very bad).

I am faced with the choices of going through with the transplant or waiting indefinitely while trying that one med (over the course of many months). There is a chance that that med would work and put my cancer into some sort of remission. There is also a chance that during that period of time I will get sicker, ie: fanconi gets out of control, I get another blood clot or the cancer progress so much that I no longer qualify for the a transplant. The transplant on the other hand is going to be really, really hard. Potentially life threatening. I really don't think that the doc would allow me to go forward if there was a good chance that transplant was going to kill me.

I feel like I am on a difficult Class V river run and am scouting a big, bad rapid. I can get out of my boat and walk around the rapid, or I can run the rapid and face the dangers that are there. It feels that if I choose to walk (wait, take the meds and do the transplant later) that I am wasting time. I have been sick for a long time and am really tired of it. I want to take the quickest path to good health that I can. I want to move on and find out what is on the other side of this transplant process. That means that my choices is to run the rapid. To go in and do the transplant on Friday. It will probably be hard, I will be really nauseous again. I will loose all of the 20 pounds that I've put back on the the last 20 days. I'll feel terrible. I'll loose all the hair that I have grown back. I will have excruciating mouth sores. I'll be exhausted. I'll be stuck in the hospital for about a month (maybe longer). But that is what I am going to do.

I will not feel like writing blog posts for a while when I am recovering so all the news will come from Sarah and our LotsaHelpingHands, Loco Care website. I am intentionally keeping that private, so if you know us and want to be in the loop just call or email Sarah and she will tell you how to sign up for that if you haven't already. If you don't know us personally, just know, I'll be back and writing a post as soon as I am able.

Thanks to everyone for your support and good wishes. It means a ton to me. I will be reading the comments below so keep me posted about the cool stuff that is happening in your life.
Thanks for reading.

Monday, August 18, 2008

Couch Time

I've been doing some serious couch time this summer. I spent the whole Tour de France on the couch and at this point most of the Olympics. I am on the couch as I write. It is a good couch. We bought it a couple of years ago at Ikea. It is leather, long enough that I can lie down and comfortable for sitting up. It is starting to feel like an old friend. We've spent some good and some bad times together and it is always there to hold me up. The good news about getting to know the couch so well is that I am able to get out of bed and make it to the couch on a daily basis.
Maybe, if everything goes well, in six or eight months, I will be renewing an old relationship with my road bike and the couch's cushions will be recovering from bearing my weight for so long.

I continue to feel better. Nausea and pain are still my biggest challenges and both are under control enough that I am able to eat and move around the house pretty well. At my lowest weight in the hospital I was down to 141 lbs. I weighed in on Friday at 155, so I am doing my work. It would be nice to put on another 10 before I go in for the transplant on Sept 1. So I'll keep eating Ben and Jerry as I sit on my couch.
My energy is fading so it is time for me to sign off. See you soon. Thanks for reading

Saturday, August 9, 2008

What I've got

Well, we made the trip back home last night. I rode with Brother Billy and Sister Jay last night. I got discharged from Stanford in the late afternoon and we went to Thomas' house to wait for rush hour to finish.
It is great to be back home. Brother Bill and Jay are still here and the Chickenhawk is at the gym and off doing some grocery shopping. We watched the Olympics for most of the day. I am feeling a lot better than I was a couple of days ago. With the help of meds, my appetite is back and I am eating as much as I can and regaining weight.
My biggest challenge is my kidney condition. It got diagnosed about two weeks ago as I was entering the hospital. It is called Fanconi syndrome. The problem is that I am spilling all sorts of critical electrolytes in my urine. I drink about 8 literes a day and pee as much if not more. I am always thirsty, I have to pee about every 20 minutes. This has been going on for some time, and slowly getting worse. Until it was diagnosed, I was feeling worse and worse with more and more nausea, etc. We thought that I was just having more adverse reaction to the chemo than most folks but it was more than that, I was dangerously low on certain electrolytes.
When I was in the hospital the doctors first managed the imbalance with IV fluids. That was great for getting me back to health. Now however, I have to manage myself with pills. I haven't actually counted all of them, but I take one particular electrolyte, eight pills, four times a day.

The prognosis for the Fanconi syndrome is mixed. Some of the docs are telling me that I may have this condition for the rest of my life while others are telling me that the BMT msy cause the problem to slowly go away.

In addition to that, I have a blood clot in my left leg/ hip. My leg is swollen about 1/3 of regular size. The doctors have put me back on anti coagulation drugs and we are hoping that will cure the problem. There was some talk of removing the clot through an interventional procedure but we decided not to do that since the dye that they need to use is bad for my kidneys. At this point I need to protect my kidneys as much as possible.

So, I am home. I am happy to be here. The girls are coming home tomorrow after a month in OR (thanks again Shalyn, Lance Nancy and Charlie). The chickenhawk and I are really looking forward to seeing them. We miss them terribly. It feels great to be out of the hospital. I was in for 11 days and I hope that is the most time I ever spend in one again. It is great to be alive!!
Thanks for reading.

Saturday, August 2, 2008

Rumors of my demise are greatly exaggerated

Since the chickenhawk is typing for me right now (verbatim -ed) we'll make this short and sweet.

I am alive.

I checked into kaiser hospital on Tuesday feeling crappy from the latest round of chemo. It was a dark couple of days that I hope I never have to repeat. But I've turned a corner, took an ambulance ride from Roseville to Stanford, and I am geting my strength back and uh (burp) at my new digs. I am really tired, I have lost a lot of weight, and my focus is on learning how to eat whole food again, gaining weight, and getting healthy for the transplant. (my mouth is getting sore, let me take a sip) My uh lack of communication has been intentional; I have to focus on myself right now. I appreciate all the love and support. I love the comments and savor all of them. (Um) I'll let you know when I'm ready fro phone calls and visitors. (Um) All detailed information is going through Adam Forest, my team captain right now. Please contact him for questions or concerns.
Love to all of you, thanks for the support and kind words.
Love, Spencer