Too much information

I feel like I'm living in a bubble, far away from home, friends and family. I planned on using my recovery time here to do some painting, drawing and maybe practice my guitar skills. To be honest, I spend most of my days in bed resting. For the first 30 days after my transplant, I didn't even have enough energy to read. I just laid in my hospital bed, napping and listening to the pumps send IV nutrition, saline, and medicine into my body. I didn't eat solid food for at least 3 weeks, my mouth and throat were sore from the whole body radiation I'd received. Christina and Peter were my lifeline to the world. Christina made sure that I walked a mile through the hallways each day. I'd get a paper footprint to put on the door with each mile. Days seemed to go by so slowly.

To be released from the hospital I needed to show that I could eat solid foods again, swallow my pills, and show that my engraftment of my brother's stem cells was successful (this showed up in blood tests). When I left after 30 days, my blood counts were at the minimum for being sent home. I was vomiting almost every day and most foods made me nauseous. I'd lost most of my sense of taste- most food tasted like cardboard. And it was cold! I'd spent a month at a near constant temperature and now i could barely stand to go outside. But, sweet freedom! I felt like I'd been released from prison after spending so long in the same room, only able to wander the hallways of my hospital floor.

The second 30 days went a lot faster. We had our kids come up two at a time to visit for a week, which was just plain awesome. I slowly regained my taste and broadened my acceptable foods list. I'd still feel nausea, but was down to vomiting once a week or so. I wasn't able to drink water and most days would be hooked up to IV hydration for 8 to 12 hours. Fortunately, we were given a portable pump and hydration system, so I'm able to carry it around with me. My saliva was really thick, and swallowing it made me nauseous, so I carried an empty peanut butter container around with me to spit in. I felt like a high-school wrestler trying to make weight for my next meet. But we received the glorious news that no cancer was found in my spinal fluid and that my bone marrow was clear as well!

Today I am 87 days post-transplant. I've had a cold for the last two weeks. Christina and Peter both had it for about 5 days. My immune system is obviously still struggling. But I've kept out of the hospital and haven't had to have a growth factor shot (to boost my neutrophil counts) for several weeks now. I'm able to drink water again and am only on IV fluids for 4 hours a day. My taste for food has come back and even though I'm still fighting nausea, my list of friendly foods has grown.

My weight is down to about 165 lbs., which I haven't seen since high school. I look in the mirror and see that I've lost a lot of muscle mass. About 3 years ago I weighed 225 lbs. Deciding to shed some weight, I was down to 190 lbs a year later. My secret was to cut sugar out of my diet for several months, then to allow myself one treat per week. I think that was a pretty healthy weight for me. Now I feel like I've been in a concentration camp. My apologies to anyone who has actually been in a concentration camp, I know that my experience is actually nothing like it :)

I'm shaving again and growing my hair back (although it has yet to make much of an appearance on my scalp). I think I might have a pinched nerve in my back from one of my last spinal taps. When I cough or get out of bed I feel an almost electrical jolt in my hips, lower back and the backs of my legs. Not too fun. I've read several issues of Wired and MotorTrends, thanks to my brother-in-law. I've also read a book, not just a light one, but "Rough Stone Rolling" by Richard Bushman. It's a biography of Joseph Smith, the founder of Mormonism. I haven't read anything with so many footnotes since I finished my masters degree!

Instead of painting, I've been digitizing our CD music collection and organizing the files. Christina and I are on season 5 of Psych and enjoying laughing together. We've been listening to Christmas music and try to go to the mall every day to go on a walk together. The days are going by much faster and we're so looking forward to being with our children for Christmas. If all goes well, we'll be heading home on the 24th! I'm excited to see all of our friends in the Tri-Cities again!

We're looking at a new oncologist in Yakima for my follow-up care. We've had difficulties communicating with my doc in Kennewick, but their aren't many lymphoma specialists around. Dr. Boyd in Yakima has worked with the SCCA for follow up care before, and he's a lymphoma specialist. I'll need to meet with him at least once a week for the first month. I'll have two more spinal taps to look forward to (they're giving me intrathecal chemo as a precaution against the cancer cells coming back). I'm hoping that I'll be drinking enough fluids that I'll no longer need IV hydration. Before we leave Seattle, the doctors will remove the catheter to my jugular vein that we're using for the hydration.

We'll be watching for signs of graft vs. host disease over the next year. It can manifest itself in many ways, mostly through skin rashes or in the gut. The nausea that I'm still experiencing is a sign of graft vs. host in the gut and I've been taking steroids to try to help with it. I'm really hoping that it's a temporary manifestation and that I'll recover from it. I think I'd rather have a skin rash.

Sometimes I feel like I've had the last year of my life taken away from me. I certainly would never have chosen to go through this trial, but whenever I start to feel down about it, I have the thought run through my head that there are many people who are much worse off than I am. I've met several people here who are no longer on this earth, or who have little hope of being healed. I know several people at home with incurable diseases or who have lost loved ones through car accidents.

This one bad experience has also contained many good experiences. I have been truly blessed with good friends and neighbors. I've also felt the love of my Heavenly Father surround me and comfort me, stronger than any previous experience I'd had in my life. And in just a little over a week we'll be home!

Feeling better all the time

Day 75 post transplant. My eyebrows are growing back. I'm shaving again. Not much signs of hair, but I'm hoping that it will forgive me for all of the indignities I've forced upon it and make an appearance. Water is losing its bad taste and I'm able to drink more. My taste buds are coming back, along with my appetite and I don't feel as picky as a 3 year old when it comes to dinner.

My blood counts, white blood cells, platelets, and neutrophils are starting to stabilize. It's been almost two weeks since I've needed a shot to stimulate my neutrophils and about a week since I've had a blood transfusion.

I had another spinal tap yesterday (I think that makes around 15, but I've lost track) in which I received a precautionary dose of chemotherapy. It was pretty rough, it took three different people to finally get the needle into my spinal fluid. I had a headache afterward and threw up on the way home. But other than that, it went great because we got the results back AND ITS STILL CANCER FREE! Which is what we expected at this point, but I do not tire of hearing good news! Today I've been resting and feeling better, I don't think I'll have a long term headache from the spinal tap, just a sore back for a few days. We've got three more planned, every two weeks.

I can taste food again! I know I mentioned it already, but it came just in time for Thanksgiving, which we spent with a wonderful family. We met the Walkers through church and they invited us for dinner and then out to see Disney's Frozen with them. It was a wonderful day. I very much appreciate their generosity in sharing their time, family and delicious food with us.

We had our boys Michael (15) and Derek (8) with us for the week and they had a great time as well. Derek's birthday fell on Thanksgiving this year and he was excited to spend it with us. We also got to visit the Museum of Flight last Tuesday, which was AWESOME! I can't believe how many neat airplanes they had stuffed into that place. Some favorites were the SR-71 blackbird, all of the WW1 and WW2 planes, and the real Air Force 1 that president Kennedy used and we were able to walk through.

I have a good friend who came to pick up our boys and bring them home for us.We talked for a bit about people who inspire us. I've thought a lot about this recently and what inspires me is people who do service for others without being asked. Frankly I feel like this has been one of my weaknesses. I'm usually happy to help others out, but I usually have to be asked first. I don't volunteer a lot. But I've seen a lot of others do this and I appreciate your example!

If all continues to go well, we'll be home in about three weeks, just in time for Christmas. We've really enjoyed having kids up to visit the last few weeks, I'm going to miss being with them for the next little while. But it will be a short time and then we'll be together again! And for the most wonderful time of the year!