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.

14 comments:

KAYAKRAY said...

I'm glad your home Spence and that your on the upswing. We're coming up next week. If your up to company we would love to see you.

All the best,

Ray

Anonymous said...

You have more people rooting for you than you may know. Keep up the good fight!

bikesgonewild said...

...i'd say that you & the chickenhawk deserve a gold medal in the team "let's get through this crap" event...

...& i'm assuming "the great wall" they've been talking about on tv, is the one you've had your back against...

...just WIN, spencer...

Anonymous said...

I'm sure you and your family have long surpassed the "enough is enough" portion of this ride. We all have you in our thoughts.
Enjoy the girls homecoming!

Anonymous said...

great to see you today spencer-i didn't know what to expect but was psyched to see you eat, walk, and be social. thanks for having me-i thoroughly enjoyed it. keep your chin up,
tom f.

Anonymous said...

Great to hear that you have fared this treatment in winning style. Sounds like you have your condition(s) well in hand; keep up the great attitude!

I thought of you while watching the men's RR in Beijing yesterday. So glad you are home! Enjoy the girls.
-Barb

Heather Brooks Freer said...

No way! You look soooo good in your pic on the website, and in a hospital gown, no less!

Can't wait to see you & the girls (all three) this week!

Welcome home. well, well, well welcome, welcome, welcome.
love H

Anonymous said...

Great comeback vecino, way to go!
Enjoy your beautifull girls and home.We love you. Keep up the good fighting.
pantani

Anonymous said...

Thanks for the blog.
It keeps us updated on your
progress. Have fun with the
girls hi to all.
Love and prayers from Hibbing.

Anonymous said...

Glad to see the blog entry...shows a great attitude. Love to the girls from

granny

Calidad said...

It is great to hear that you are back at home. Looking forward to seeing you all.

bert

Judi said...

Spence! Glad to see you posting - all on your own too! Keep on being strong, Spence. YOU GOT THIS! Like BGW said WIN SPENCER!!!

Judi said...

Spence! Glad to see you posting - all on your own too! Keep on being strong, Spence. YOU GOT THIS! Like BGW said WIN SPENCER!!!

Anonymous said...

SO good to see the girls at school. SO glad you are home. Might not be nearby any more but you are in our hearts always. Much love,
Noey