Home Again

Our new tandem

Leukemia never ceases to come up with something unpredictable and bizarre. This past ten days I have been enduring some of the most painful symptoms yet. There is a virus called BK virus that is endemic in about 80% of the general population without any symptoms. For some reason peculiar to Bone Marrow Transplant patients taking immune suppressants like Tacrolimus, the BK virus often rears itself and inflicts Hemorrhagic cystitis. The symptoms include severe pain during urination and blood in the urine. There is no cure. I am told that after six weeks it should go away. The only relief is to ingest copious amounts of water. The problem is that when I urinate I can only squeeze out about 50cc when normally I can go about 700cc. That means a lot of getting up to go. At night when I don't drink as much, my urine becomes more concentrated which only aggravates the pain and increases the bleeding.

Now after a week of aggressive hydration I finally have it under control with little pain. It will come back unless I keep up the drinking. I am now able to urinate an average amount. The pain meant that I had to resort to going on Vicodin until yesterday.

I am told that it will still be about two months until I can go to a restaurant or go shopping. The prednisone I am on keeps me wired like I am on ten cups of coffee. Being so wired makes it hard to stay off my feet but my sore feet knocks me down late in the day. It is hard to sort out what is a side effect of the drugs and what is GVH. The GVH in my gut is still there causing little mouth blisters on my palate and a sore rectum. The skin GVH has calmed down from applying moisturizer every day to my entire body. My skin actually looks and feels good. At the weekly clinic they say I am doing as good as can be expected. We are still waiting for the final cytogenetic results from my bone marrow biopsy to determine if the FLT3 ITD gene is still present.

The result of having so much pain down there has delayed my getting back on the bike. Today I hope to go out for a spin for the first time in about three and a half months.

Billie and I also bought a used tandem off of Craigslist. I saw the tandem for sale last fall and I was shocked that the guy never sold it because it showed up on craigslist again recently. It is older and steel but still a very nice bike. I missed my old road tandem that I traded for some misguided reason for a Mt. bike tandem in the late 80s. The bike needs some minor brake upgrades but overall it is ready to go. That is one more bike in the garage. I purged a few bikes I wasn't using a while back, so now we are down to only nine bikes including Billies'.

I have been at home in Sacramento for two weeks now. Moving in has been quite a chore. Our neighbors who we paid $700 a month for over three months to clean the house and pick up after our dogs did less than the minimum. I am grateful to them that the dogs are here and still alive. The gratitude ends there though. We made a trip on the Tuesday before we moved back to check in on the dogs and pick up a few things we needed to help us move. The front door was hard to open because it had swollen from the heat in the house being off. The pilot light had gone out on the heater and the caretakers had not bothered to restart it. Consequently the humidity had risen in the house so much that the oak flooring had swollen and buckled in several places. The water table is high in the winter because we are so close to the river. The caretaker had been forcing the door which warped it. I spent a few hours again shaving back our new mahogany door to make it work again.

Our new front door in Sacramento

When we entered the house there were hundreds of grapefruits and oranges in varying states of decay all over the house that the dogs had brought in. Billie picked up all the rotten fruit and scraped the floor where the fruit had hardened after rotting with a wooden block while I mopped behind her. The rest of the time, Billie was in the back yard cleaning up months worth of poo from four dogs that was never picked up. They had picked up a little into an unlined garbage can that had no lid so rain water had saturated the whole mess. The heavy slurry of poo was dumped into the trash by Billie with the help of the gardener. Billie was mad to say the least.

I could go on. In hindsight I should have asked our next door neighbors who I know would have done better. The people across the street we hired seemed like nice enough people. The dad has been out of work for about two years. He is holding out for a job at a Christian radio station. Evidently they are not hiring the mentally challenged at Christian radio right now. The wife works at a near minimum wage job. Their house looked clean and they had a dog and a ten year old boy. They really needed the money.

Since I have been home, Billie has gone back to work. I have been playing the role of House Husband. I get Billie up early with a latte in bed to give her time to exercise on her rowing machine. I make her breakfast and pack her a lunch and send her off.. During the day I have been cleaning house and getting the office room together.

Our office with my computers on one side of the desk and Billies' on the other side.

We took a day trip to the Tahoe house to pick up a few things including a recliner and my old computer that has my drafting program on it. I can now use it to design our remodel of this house while I recover from this disease.

Billie at our house last week.

I went on a shopping spree online now that we are on a secure internet connection. I ordered a few kitchen gadgets and some camera accessories among other things. I have a new citrus juicer that I used for the first time this morning. There are still a ton of super sweet oranges on our trees that I plan to eat. In the summer we have unlimited grapefruits. The juicer was less than $25 and was rated best by Cooks Illustrated.

My new Black and Decker Citrus Juicer.