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.

26 comments:

Khirsten said...

You don't know me, but you have and will be in my prayers. I have always enjoyed reading your blog. I think I heard about you from Fatcyclist in case you are wondering! Blessings,
Khirsten

uncadan8 said...

I'll be praying for you buddy. I just did the Philly LiveSTRONG ride out here and had you and all the others who are fighting cancer on my mind as I rode. I look forward to hearing how your recovery goes.

Anonymous said...

what does one say to someone who is about to go the distance? You and your family are always in our thoughts.

Anonymous said...

This IS a big scary drop. You haven't run this one before, but others before you have. Know that it can be done.

Splash some cool water on your face, Stay focused, and paddle hard.

We'll run safety for you and we'll cheer you along from shore, and know that we'll be there at the bottom to celebrate.

Marek

Calidad said...

What Marek said. Know that it can be done, Spence.

Bert

Anonymous said...

Spence,

Sorry I won't be there to send you off. You will be with me (me on my mini-journey, you on your biggest journey ever). I'm not river savy but I will be at the bottom of this run with my arms open. It lit up my world spending some time with you this week. I hope we can do some couch time when you return. Much, much, love & blessings, Noey

Anonymous said...

Best of luck! I am hoping that against all expectations this turns out to be easier then the prep.

Anonymous said...

Smart boaters take all the information from the guide book, friends, and the signs and then look inward and decide.

I believe your decision is right.

I, too, am waiting at the bottom with a throw bag.

And a Pale Ale.

Love, Kate

Anonymous said...

I wish you and your wife all the best during your transplant. I can't imagine what you must be going through but you should know that complete strangers are praying for you!

Tina C,

Anonymous said...

Granny is with you always

Lots and lots of love

Anonymous said...

Spencer--you are in our thoughts and prayers. We love you!

-M

Anonymous said...

Spencer, We send you all our thoughts and prayers and love and support as you enter the big drop. You were always good under pressure before and this is no different. Lean forward in your boat, paddle hard, make each stroke count. Beth, Marco and Alessia

Anonymous said...

let us all invoke the pre-drop paddler's prayer: "god give me eyes of snail and balls of steel!" (props to joe dengler). sing it loud and long people - maybe spencer will hear us in his darkest hour.

godspeed amigo.

tyler and sherri

Melissa said...

Spencer,
It was so good to see you so strong and ready for this. Thanks for letting the girls & I be there during this decision making time and help as best we could in family support. You are amazing and doing so well - you're an inspiration! Will be thinking of Joe Dengler's quote for you! Love, Melissa & Dmitri & Malia & Kai

Anonymous said...

Spencer...we wish you the best of luck.You are in our thoughts and prayers.Your a very strong guy and we love you.

Rae and Andy said...

Hey Spencer,
We have been following your website for a while now and have not posted yet but I wanted to wish you very good healing and fast healing after the BMT. My dad went through the same thing almost two years ago, it brings back lots of memories. We will be thinking of you and your family in the next month. Lots of love......
Rae, Andy and family

Anonymous said...

spencer...we'll be here for you but you must reach down and grab ahold-fortune favors the bold,
tom f.

Karrie said...

Hi Specer,
Culley and I have left prayers and mantras for you all over the Sierra this spring and summer. I'll be sending off aother really big one in the Marble Mountains come Friday. We are looking forward to the good news on the other side!
Karrie Thomas

Anonymous said...

Spencerama,

I totally agree with your decision. It's a tough one, but it's the right one. I can't wait to welcome you back home and then have another giant party with you when you are ready for it. b

Anonymous said...

As the shirt j Miller wore back when I first met the two of you said " Paddle or Die"...you'll keep paddling. Think of you everyday still Spencer. Aiming my cheers over the hill. ABS

Anonymous said...

Spencer- I agree with your decision!!-You are an inspiration-You're strength and determination are to be admired. I believe in you and will be sending good thoughts and prayers your way.
God Bless
C.

Anonymous said...

Spencie,
While I've not been around much, know that I have been thinking of you often. I have incredible faith in you and your ability to navigate this with grace and vigor.
I trust so much that you will make it through this storm just fine!
Keep focusing on the calm, cool blue water at the end. You can do it! Hold strong, remember to breathe, and know that we all have your back in the true spirint of AFG (adventure, friendship, growth!):) What else can I say? "you are a poem"! much love aidee llady

bikesgonewild said...

...my computer virus-ed out & i literally lost hundreds of sites but i was always thinkin' about cha, spence...

...my best, always, man, but especially now...

...keep up that indomitable spirit & strength & just WIN, SPENCER...

Judi said...

What BGW said....

xxoo - best,
Judi

bikerchick said...

Hi Spencer,
...from another invisible internet buddy. Been following your story for a long time now and am glad you have stuck your oar in the water (sorry I don't paddle so that's probably wrong about 100 ways but the sentiment is the same ;-)

However hard the path, please know that you have a lot of people pulling for you. Count me in for that party, too!

Tourmaline OTC said...

Dude,
the big drop is yours to run and once chosen, and committed to, good things are likely but not without great effort and a few white knuckle moments too. Try to think of that moment when you will be through the maw, in the eddy looking up(back) at the vortex of hell able to mutter those magic words coined by the ghostbusters themselves.....
"We came, we saw, WE KICKED ITS ASS!"
(it was a slimy little bugger too!)
Hang in there my friend. Kiddos are safe at home and the gnome people are representin...
Love,
TOTC