Wii Fit

The conditioning for the transplant and the steroids have been taking their toll on Ann's back, leg and hip muscles. Even though she has been tapering off of the steroids for a couple of weeks now, she has been complaining that it's difficult to do things like carry a modest weight while walking up a step. So to combat this she has started doing Wii fit at least once a day.

This isn't a commercial for Nintendo, they certainly don't need my help in that department, but the results have been pretty impressive so far. So much so that I would strongly recommend that anyone who is recovering from a transplant go out and get a Wii and a copy of Wii Fit.

The exercises are gentle to start off with and the difficultly is progressive enough for a variable amount of challenge. As you do more it rewards you with the option to take on more difficult and rewarding exercises. Its kind of like having your own personal physical therapist.

After doing it for a couple of days Ann was very happy to point out to me that the steps on the front of the house were nowhere near the challenge they had been. Now she is able to help me do things like take the groceries from the car and carry laundry baskets. That might not sound like much, but considering doing those things left her totally wiped out before it’s a small step back to normal. More importantly, now when a 14 Lbs. cat sits on her she's not trapped for the rest of the afternoon.

I had my monthly checkup in Houston yesterday and all is well. My blood work was normal for the most part, with the exception of my liver enzymes. Yet again they are elevated. Dr. Kebriaei thinks that this is due to the V-fend that I take and has decided to stop it in favor of Noxafil. She's worried that my liver is irritated due to a number of things, including extra iron from all of the transfusions I've received over the last two years.

In two weeks I'll see my local oncologist for follow up blood work. If my liver enzymes are still elevated then Dr. Kebriaei wants to start me on a new medication that will help eliminate the iron from my liver. She's a little hesitant since I'll be the first transplant patient that she's prescribed this to.

I've also been given the green light to stop testing my blood sugar. After quizzing me about my numbers and the amount of insulin I inject, she decided that maintaining the integrity of my skin was more important. W00t! I still have to follow a diabetic diet, but that shouldn't be a problem. She also wants to be more aggressive about tapering the amount of steroids I take. If all goes well, then I should be completely off of Medrol by the beginning of March. This does mean that I'll start to feel a lot more tired and will probably have more muscle wasting issues. I'll deal with it when it comes.

If anyone needs me, I'll be sitting on the couch recovering from yesterday.

One of the side effects of being on a high dose of steroids is that you may become diabetic. As a result of being on steroids since last November, I have become diabetic. I'm supposed to test my blood sugar three times a day and dose myself with insulin when appropriate. I've been very lucky in that I rarely need insulin, maybe two or three times a week. The shots are no big deal and having to stick myself to test my glucose levels rarely hurts. I do find the whole affair highly annoying, though.

I've never been the kind of person who eats on a schedule. I much prefer to graze throughout the day when I'm hungry. Now, if I want a snack, I have to weigh my choice of food against what it will do to my blood sugar. If I eat too close to a set meal, I can guarantee myself a shot in the stomach. In the scheme of things it's a minor inconvenience and I know it's not going to be a permanent way of life, but there's a reason for this rant.

Saturday morning I had a feeling that I was headed for a urinary tract infection. I wasn't displaying any symptoms, but a little voice in my head was telling me that I needed to do something before I started to run a fever or feel that ever pleasant tingle. UTI's are normally no big deal if you're healthy, but for me, it means a trip to the ER.

Chris ran to the store and picked up six litres of cranberry juice. I drank three litres alone on Saturday. Here comes the rant...cranberry juice is full of sugar. (Yes, I know you can get the "lite" version which has significantly less sugar, but doesn't quite taste right.) My blood sugar has been out of whack all weekend. It's driving me crazy. It's also making me cranky, but I can blame that on the steroids.

I've almost finished the last of the juice and hope that I've nipped this little problem in the bud. We're headed to Houston on Wednesday, so I should update by Thursday. Think happy thoughts.

The Crave!

Being a resident of south Louisiana, I sadly live in a world deprived of one of my favorite fast-food treats, the White Castle Slider. While I was on my job interview a few days ago I was delighted to discover that right next door to the hotel I was staying at there was a shiny brand-new White Castle. I felt like I had stumbled into the realm of a lost but much more advanced civilization, that just happens to make small hamburgers. This must have been like what Howard Carter felt when he found Tutankhamen's tomb. As soon as I checked in I hot-footed it over and ordered a sack of sliders, and no fries, since they are just empty filler. I managed 8 before I had to stop and they were exquisite.

My only regret was that I couldn’t share the experience with Ann. She's an even larger White Castle fanatic than I am. In fact those little sliders rank among her most favorite things ever. The thought of her missing out on something she loved led me to explore several ideas after my interview on how to transport a bunch of sliders back to Baton Rouge. Sadly, none were workable. Almost every idea I could think of ended with botulism and a emergency trip back to MDA.

However, I did hit on a plan, which I put into action yesterday. While I couldn’t bring Ann to the sliders or the sliders to Ann, I could make my own for her. And after a quick trip to Wal-mart and a little research on White Castle via Youtube, I had everything I needed to crank out two dozen of the tiny but tasty little burgers. I know they aren't the "real thing", but I love her so much I wanted to get as close as possible. Sadly the operation was too large for it to be a surprise, but Ann was over the moon about them. She gobbled 4 at dinner and another 2 for breakfast this morning. So I think she likes them.

Still no word about the results from the job interview. Never fear, if it doesn’t work out I have a couple of irons in the fire still.

Eek!

My niece, with whom I'm living, just got the official word that she has pink eye. Insert paranoid scream here. According to the doctor she'll be contagious for the next two days. This means that we'll be isolated from each other for the next few days. I can find humor in this since we just had a lengthy conversation with each other from the relative safety of our rooms. Imagine the two of us yelling across the house to each other. The neighbors must think we're insane.

I've sent an email to my transplant nurse to see what further precautions the team wants me to take, if any. On the cat front, there appears to be a lack of squiggly little parasites, so I'm going to assume that the shots worked.

I'm currently working on a knitting project for myself and it's making me feel like Sisyphus. The whole project should have taken less than a week and yet it keeps dragging on due to mistakes on my part. I keep getting to the same point and having to rip back an inch almost daily. This morning I was feeling pretty smug about being almost done when I noticed a dropped stitch that was slowly unraveling down the side of the hat. Now I have to fix it. Grrrrr. At least I'll have something to do while I'm on lock down.

After one missed flight, a mechanical problem with the plane, and some lost luggage, Chris is back safe and sound. He's currently ensconced on the couch watching Sponge Bob and fending off Etsuko who has worms. That's right, she has worms.

I made the discovery yesterday while home alone and thought, "Of all the times for something like this to happen." I know how the worms are transmitted, so I knew the likelihood of me contracting them was low, but nonetheless. I have the unfortunate distinction of being the slowest moving thing in the house, so you can usually find either Pez or Etsuko draped over me or in my lap. The cats in my lap, I don't mind. The cats plus their wiggly little passengers, I do.

Chris, Dixie and I brought the two girls to the vet this morning to take care of business. I stayed out in the car just to be safe. The vet assured Chris that the cats should be worm free in 24 hours.

I've recently realized that I haven't been writing about some of the side effects that I've been experiencing since this last transplant. I suppose that they've become so ingrained into my daily life that I take them for granted.

Some days, my hands shake uncontrollably. It gets to the point that I can't write legibly or hold knitting needles. Most days, it's just a fine tremor. If I try to hold my hands still, I can feel the muscles in my shoulders begin to shake as well. It's a surreal feeling not being able to control your fine motor skills. My transplant doctor says it's a combination of Prograf and steroids.

For the most part, I find the side effects funny in a ha-ha sort of way. My face, neck, and abdomen are puffy from the steroids and to be absolutely honest, it doesn't bother me. I know it's not permanent and will go away once the steroids stop. I've also run into a little steroid induced acne which I don't love. I feel like I've already been through that phase in my life. The do over isn't so bad, but who really likes to deal with a pimple.

My most favorite side effect of this medication is the luxurious hair growth. The hair on top of my head is coming in much more quickly than it did with the last transplant. I almost have a head full of quarter inch long hair. Unfortunately, the luxurious hair growth doesn't stop on my head. I've developed quite the man-stache and I suspect that my sideburns/beard will be the envy of many a twelve year old boy. I am not exaggerating and know that there are others of you out there who are experiencing the same thing. Chris was calling me "Fuzzy P" for a short period of time. It was that bad. Past tense since I got my hands on some cold wax strips.

With all of that being said, I know I have it easy. I'm doing well and staying out of the hospital. Chris just got back from his job interview and maybe something good will come of that. Since I promised to reveal all, it was in Kentucky.

I took another step toward normal today when I dropped Chris off at the airport. Of course I couldn't go in with him, but I felt well enough to drive there and back which is a small victory. I won't say where Chris flew off to, but will say that it was for a job interview. He comes back tomorrow night and I know he'll be exhausted with all of the flying and driving that he'll have to pack into two days.

While he's away, I've promised to stay out of trouble. No running with scissors or licking door knobs for fun. This is the longest that we've been away from each other since this entire cancer saga began and I know it's hard for him not to be able to "see" that I'm well. I'll do my level best not to instigate an internal coup against my graft while he's gone. I'm staying hydrated and taking my temperature at intervals. I've done all that I plan on doing of significance today, so he can rest assured that I'll be taking it easy. He's left me in good hands with Dixie. She's already checked in. Pez and Etsuko are keeping me company while studiously pretending the other doesn't exist.

Just another lazy day around the Gregory household.

As an aside, can you believe how puffy the steroids have made my face?