Updates – Counts and Hair

My weekly appointment today was fairly uneventful. My counts are holding steady on the very low side of normal. For those interested: White 4.7, Red (Hemoglobin) 10.2, Plates 91. Last week the doctor checked my spleen and liver. He said that he couldn’t feel them and that was good news. Apparently you are not supposed to be able to feel them. He also said that I look great. That’s always encouraging to hear. They are starting to lower the dose of Prograf that I am getting. This is the anti-rejection drug that keeps my body from rejecting the marrow and the marrow from rejecting my body. I asked what horrible thing I can expect to happen as I am taken off of this. He did laugh, but said that they will just keep monitoring for graft vs. host disease – skin rashes, wacky liver enzymes, and unpleasant digestive tract symptoms. We shall see.

I asked about my hair today. Before the transplant, I had started to grow back a little bit of hair (just enough to notice that it was coming back in). It is getting close to three months (Day +83 today), and there is no sign of any hair. I haven’t gotten to the point where I mind this yet. I appreciate not having to dry and style it, but I still scare little kids when I am out in public. The doctor reminded me that Busulfan (the chemo I had before transplant) is VERY hard on hair. I should not expect to see any until 4 – 6 months after treatment. At least that gives me a time line. A friend who is a wonderful artist has been doing art with hair recently. She cut my hair off when I was first diagnosed and kept some. She recently gave me a beautifully framed piece that she made using my hair. It is wonderful.

I feel very good and much of my energy is returning. I am trying to work as much as I can without overdoing it. It is truly a miracle that I have gotten as far as I have, but I constantly have to battle to live in the moment and not worry about the future. I am going to enjoy my family and my friends and job and life while I can.

Laura

Okay, okay!

All right, I guess it’s time for me to answer a question.  Several people have asked where that hole came from that Laura fell in.  There were two different times that a huge tree we had in the back yard lost a limb.  Now the size of one of these limbs was the size of some trees.  It was HUGE!!!  When it fell it covered the entire yard and smashed up our fence.  The end of it hit the ground and dug this hole.  It didn’t start out as big as it is now. I think I finally realized this year just how big it was becoming.  Part of the reason is I believe there is an animal that has decided to use that as an entrance to its lair.  Fairly good size animal at that.

Now for the clincher: Yes, I am that lazy that I would not fill the hole up.  I’m not one to keep up very well on taking care of certain matters around the house, mostly the yard.  I hate yard work and would rather shove bamboo up my fingernails so I tend to ignore projects in the yard.  If no one falls in the hole, no need to fill it in.  Enters Laura.  After her fall, I’m forced to address this issue.  After the gasps from people regarding the hole, it puts even more emphasis on the need to address this issue.  No fear, the hole will be taken care of soon.  Now I have to decide whether she tripped on purpose to get me to fill in the hole or whether it was REALLY an accident.  The mystery remains unsolved.

Brad

Where Did that Hole Come From?

I haven’t been in the great outdoors very much for the past 9 months. Even now that I am feeling better, I have been slow to hang out for very long in the sun. I have to slather myself with 50 spf sunscreen to avoid triggering graft versus host disease and skin cancer. (I am prone to both of these for the rest of my earthly life, due to the transplant.) I really don’t think I have been in our backyard more than 3 times since December.

Imagine my surprise today when I discovered a fairly large hole in our backyard! I discovered this hole by falling in it as I went outside to tell Noah something. It was not a graceful fall! Both of my ankles buckled as I fell in, and I put out my hands to catch myself, scraping both of my palms. My shin hit the side of the hole, promptly swelling up and turning black and blue. If I had seen someone else do this, I probably would have laughed. I know it was a funny sight.

I had been so careful when I first had my transplant to watch every step, hold onto railings, and look where I was going. Apparently, when your platelets are at 7000 one tends to be much more careful than when they are at 94000. After propping my leg up and plopping a bag of frozen vegetables on my shin, I called the bone marrow clinic to make sure I was not going to bleed out. The nurse said that if the cuts on my palm were clotting, they could just look at me during my regular appointment tomorrow. The cuts had barely oozed, so I am safe for now. I know the nurses are really going to have fun with this one tomorrow.

Laura

Day +69

I have been feeling really well this week. My cold seems to be going away, slowly but surely. I didn’t report on the results of my doctor appointment last Tuesday, so I will try to include some details from last week and this week.

Last week they took many vials of blood from me to do extra testing at the Day +60 mark. I received the results of my blood counts that day (Whites – 4.7, Reds – 10.1 and Plates. – 114: all good), but the rest of the results took longer to be returned.

As I was talking to the doctor last week, he said, “So how’s your workout going?” The crazy look I gave him was the result of barely knowing the meaning of the word workout! After recovering sufficiently, I said, “Well, I was thinking about doing 10 minutes each day on the treadmill. What do you think?” His response was, “How about 30? Ten minutes 3 times per day.” Oohhhh.

The nurse told me that because of the long holiday weekend, the clinic would not call me with the results until Monday. Monday came and went, and while I didn’t sit by the phone, the idea did cross my mind that they wanted to tell me the bad news in person instead of calling.

Today my counts were still good (White – 4.6, Reds – 10.4, Plates. a little lower – 94) and the doctor couldn’t find anything wrong with me. “How are my kidneys, doctor?” “Much better!” “How is my liver?” (Liver damage is often a side effect of treatment.) “Your liver is great!”

Most interesting thing the doctor said today: “You really need to push yourself a little bit more, past what you think you can do.” He indicated that this will enable me to go back to work in the fall.

Best news I received today: After expressing my concerns about not receiving test results and tossing out the theory that he was holding the bad news to tell me in person, the doctor said that he hadn’t seen any test results, and that I was correct in assuming bad news would be delivered in person. The results weren’t back, but he would call me later in the day. While I was finishing up my IV treatment, the doctor and nurse came in with the good news. My results show that all of my marrow and blood are from the donor! The bone marrow transplant is taking, and I am doing as well as anybody can. There were of course the obligatory jokes about being male now since my donor is male. I also have a different blood type now.

Thanks to all of you who have been praying for this whole process. It seems like a miracle to me that everything is going so well. I have tried to stay positive through the whole ordeal, but sometimes it was hard to hope. I am continuing to learn to trust God more with my future, knowing that no one is promised tomorrow.

You may see me out and about as I try to “push myself a little more.” Day +100 might even find me in a crowded room!

Love,

Laura