Sunday, May 31, 2009

Four months "out"

Yesterday marked four months out from my transplant.

It was a beautiful day here. Katie and I put Maddie in the car, drove to the lake and walked around it -- one mile. It was the second time I did it. The trees were lush, the water sparkling and a light wind was blowing. Because Maddie had run away, I didn't totally trust her to be off-leash, but I know she needs to run around. So I took a bag of bribes (leftover chicken) and let her off. Every time I called to her, she ran right back. She dashed into the water, splashed around, ran circles around us and then sat in front of me for her treat. She made us laugh.

On the way to the parking lot there is a little incline. We swung our arms, Katie urging me on. When I did that walk about a week ago with my friend Ellen, I slept on the couch for at least an hour afterwards. I must be getting stronger, but sometimes I can't stop myself from whining about how weak I feel compared to my "old" self, and how it pains me to see the joggers running by me on the lake path and to look up at the tennis courts and watch the players thwack the ball.

But this is a long slow recovery I am on and I'm grateful to now be able to walk around the lake. I need to remember that just a few weeks ago, I could only walk to the corner and back...and that not too long ago I couldn't walk at all.

Last night I decided to take my "bed" exercises onto the floor. (Stretching, leg lifts and some yoga poses.) I rolled my yoga mat out and figured that I could call one of the kids if I couldn't get up. It's harder on the floor! While I was down there I found myself eye-to-eye with a big bag on the floor next to my dresser. Obviously I see it every day, but I hadn't looked inside it, figuring it was stuff left over from my tag sale. I didn't want to deal with it, so I just kind of stopped seeing it.

I inched over and looked inside. It was full of gifts, cards and miscellaneous things that Diane had packed up and sent home with the kids over the winter. One box contained a beautiful garnet bracelet that I had bought for myself when a friend had a jewelry party with items from the Silpada catalogue. I don't usually buy jewelry from a catalogue. I shouldn't buy any at all; my mother was a jewelry designer and showered us with jewelry. But this bracelet really caught my eye.

I had been looking for that bracelet ever since my discharge, when I was at Diane's and realized I hadn't seen it for a while. She said she was sorry, but it was probably misplaced in my rushed move in the hospital from 6C to the ICU and then to 6A, the section with the most intensive care. I liked the bracelet so much, I was about to order another from the catalogue.

And there it was, right under my nose. It's always tempting to look for morals, and one presented itself to me right away: When you stop trying so hard to find something, whether it's simple like a "lost" bracelet or complicated like the answers to life's big questions (such as why did I get sick?), that's when you find, if not answers, then at least peace of mind.

Thursday, May 28, 2009

High potassium alert

For my latest adventure in post-transplant complications, I have been dealing with high potassium. Once again, I pose the question: Who knew?

This results when the kidneys do not filter out potassium as well as they should. My kidney function continues to improve, but after what I went through this winter, they are apparently not up to speed in this department. The number was high for two weeks in a row. The treatment was drinking this awful concoction that gives you the runs, plus taking in more fluids and avoiding high potassium foods, which actually cover a wide range.

Complications from high potassium can include arrhythmias, cardiac arrest and changes in nerve and muscle control. My potassium was not so high as to be extremely concerned, (5.8 out of a normal range of 3.5-5.0), but it was high enough to do something about it. Yesterday I took an extra dose of the lovely medicine, and today it was back to normal -- 4.8. I will need to take the medicine twice a week and monitor my potassium intake.

I wasn't that worried, but when I learned that the kidneys are responsible, I did have a flashback to those days in the winter when I was on dialysis and my kidneys were failing. Once you have had a problem in a certain area, you are always hyper-alert to possible signs of a flare-up.

My platelets were 18 today (out of a normal range of 155-410). They seem to be at least staying in the teens instead of going down to single digits, and Dr. Alyea was pleased. He said I might be able to decrease soon from two visits a week to one. "But we have to get those platelets out of the teens!" I said. "One step at a time," he replied. Ooops. Thanks for reminding me. One step at a time, I went to the infusion room and got a bag of platelets.

You might be surprised at the long list of foods that are high in potassium:
• Apricots, canned and fresh
• Banana
• Cantaloupe
• Dried fruits - apricots, dates, figs, prunes
• Honeydew melon
• Kiwi
• Nectarine
• Orange
• Orange Juice
• Pear, fresh
• Prune Juice
• Asparagus
• Avocado
• Bamboo Shoots
• Beets
• Beet Greens
• Brussels Sprouts
• Cabbage, Chinese
• Celery
• Chard
• Kohlrabi
• Okra
• Pepper, Chili
• Potatoes, white and sweet
• Pumpkin
• Rutabaga
• Spinach, cooked
• Squash, winter
• Tomato
• Tomato sauce
• Tomato juice
• Vegetable juice cocktail
• Black-eyed Peas
• Chick Peas
• Lentils
• Lima Beans
• Navy Beans
• Red Kidney Beans
• Soybeans
• Split Peas
Nuts and Seeds
• Almonds
• Brazil Nuts
• Cashews
• Peanuts
• Peanut Butter
• Pecans
• Pumpkin Seeds
• Sunflower Seeds
• Walnuts
Breads and Cereals
• Bran
• Whole Grain
• Chocolate
• Cocoa
• Coconut
• Milk and Milk Products
• Molasses
• Substitute Salt

Sunday, May 24, 2009

Dog days come early

Maddie gets to know her new friend, a labrador retriever
named Mary Margaret.

Everyone is in love with my friend Deb's new puppy, who was seven weeks in this photo. (We've had some discussions about the name, but hey, to each her own.) Maddie really wants to play with her, but she knows not to squash her. She prances around and tries to engage her; the first time, the puppy ran for cover, but she's gotten a little bolder and now occasionally swats a tiny paw at Maddie. My dog is actually pretty small for a lab, but she looks like an oaf next to the puppy.

We've been talking a lot about how great it is to have a dog. I was sitting at the kitchen table talking to Deb yesterday, both dogs asleep on the cool tile floor, when someone came to the door. Maddie jumped up and ran to the door, wagging her tail. "Isn't it great to have a dog come running to the door when you come in?" I said.

Maddie has been great about coming when called, so sometimes I take her in the yard without a leash. We live on a busy street, but the house is set back, and she seems to know to stay at the edge of the property away from the road.

Yesterday I went out to clip a few spring flowers from the garden, and the dog wandered off a couple of times to the woods around the house, but each time I called her, she ran back. When it was time to go inside, I called her and she dashed into the woods and disappeared. At least she didn't go towards the street. The woods border a residential neighborhood, and I cut through to the house of our nearest neighbors, Eugene and Susan. (Moss and overgrown trees...weak legs...I did not need to be doing this.)

Eugene and Susan reassured me that she'd come back, and they started calling for her too. So did Joe and Katie. I got in the car and drove around. No sign of her. I got that sickening feeling like when you "lose" a young child in a crowded store. Usually the child is right behind your legs. I figured that the dog would come back, but I felt sick and guilty.

Joe headed off to the store to buy a few things. There was nothing we could do. Katie sat on the couch with me and comforted me, saying it wasn't my fault. Then Joe called. He had made one more loop of the neighborhood called Sycamore Knolls. He said he found the dog in someone's yard. She stunk and was covered with something that she must have rolled in.

It wasn't far, so I walked down with the leash. When we got her home, he sprayed her with the hose to get the worst of it off. Then off to the bathtub. She sat nicely for her bath, looking pretty pathetic, and then when she got out, she shook. What a mess.

Joe then had to go to the store and get a new collar, because the old one was covered with whatever it was. I tried not to glare at her. I know that dogs have a short memory, and she would just be confused by an angry tone hours later. I was so relieved to see her, but I was also angry.

Today I didn't let her come outside without a leash. I'm not sure if she should get her "privilege"
back. It's nice to have her romping around when I go into the yard, but I'm not sure if it's worth another runaway episode.

There is, of course, one good thing about our little ordeal.

I didn't think about leukemia once.

Thursday, May 21, 2009

Thoughts on hair and hematocrit

I dreamt I was fishing in my purse for a hair tie. Finally I found a black one. I was happy that I found it; it didn't occur to me that I had no hair.

I forgot about the dream until last night, when I saw Diane doing the same thing I had dreamt about. I think everyone who's bald after chemo has had hair dreams. I've had others before. They usually leave me feeling sad. Little hairs are actually sprouting, but it will be a while before I am comfortable taking the scarf off.

The past few days I have felt incredibly lethargic. On Wednesday, I just couldn't get out of bed. I was awake, but I just lay there with thoughts running through my head. The few times I tried to get up, I was light-headed and had to get back in bed. "Don't lie down," I kept telling myself. But I couldn't help it, and by the time I got downstairs and forced down my shredded wheat and banana, it was 2:45 p.m. 

Today at the clinic my hematocrit was down to 24. No wonder I felt tired. (Platelets were 15, and wbc 6.6). I got a bag of platelets and two bags of blood. I was there for about eight hours, but I didn't really care because I knew the blood would perk me up. Yesterday when I went for a walk I could hardly catch my breath, but tonight after dinner when I went for a stroll with Diane, my breathing was already easier.

Ben and Joe went to the Red Sox game tonight, and Ben is going to pick me up in the morning and drive me home. I have appointments Monday and Thursday, but I am going to patch together rides so that South Hadley can be my home base through next weekend. Then I'll see what I can work out. As I told Melissa today, I'm getting a little mentally weird from spending so much time at someone else's house, with much of that time being alone.

Sunday, May 17, 2009

Good news from the lab

Sorry I've gone almost a week without posting. I still haven't been feeling well, and my desire to post seeped away along with much of my energy.

I did, however, have a good visit at the clinic on Thursday. Having not had a transfusion since Monday, I had 18 platelets, which was good for me. I got a bag anyway, because 18 (thousand) is not exactly high, and there was a bag of closely matched platelets ready for me,  specially donated by one of several people (including my sister).

The big news is that my latest chimerism report came back, and I remain 100 percent donor. That was a relief. While I was getting my platelets, Dr. Alyea stopped by and said I would soon be able to reduce my clinic visits to twice a week, and, he hoped, once a week not too long after that.

I have an appointment tomorrow, when I will again ask about the cough and the intestinal problems and continuing lack of appetite. Since they haven't found anything serious, they are not too worried.

I did get a prescription for Marinol, which is supposed to decrease nausea and increase appetite. Also known as THC, the drug is a man-made form of the active natural substance in marijuana. "Some people say it makes them a little silly," Melissa said.

So I was going to get high and then get the munchies?It sounded promising to me. When I took it Friday night I thought I did feel something different. But over the weekend I felt it just added to my general lack of energy, plus I threw up anyway shortly after I took it. Oh well.

I managed to get home again this weekend, which was nice as usual. On Friday, my friend Barry kindly drove to Newton from Western Massachusetts and took me back to South Hadley. Joe drove me back to Diane's today.

Monday, May 11, 2009

Home for Mother's Day

I'm standing in between Katie and Joe, who is next to
 Ben in this photo taken in our yard on Mother's Day.

I got tanked up with blood and platelets Friday and then Joe picked me up and drove me to South Hadley. It was a beautiful day, with the grass and trees and rolling hills showing off that light green of early spring. Katie was at a show with a friend, so it was just Joe and me. We sat on the couch together as Joe, the master of the clicker, went back and forth between the Red Sox, the Bruins and the Celtics games. Normally I would get annoyed, but I was happy to be at home, Joe switching channels on one side of me and the dog curled up asleep on my other side.

I had a trickle of visitors on Saturday, took a short walk and spent a lot of time on the couch. It was of course great to be home, but I wasn't (and still am not) feeling great. I am having trouble eating, and when I do eat, I often throw it up. When you're tired and not feeling well, it's harder to stay on the sunny side of the street. Patience does not come easy. And as good as it felt to get home, it was also a little surreal. After all, I haven't been there since late December, and I felt like I was plopped from one world into another, and then dropped back into the Boston world again. At least it's not the hospital, and as I've said before, they're treating me well here.

Yesterday, Mother's Day, was wonderful. Ben drove home, and the three of them presented me with very touching cards and great presents: a Red Sox hat, a pack of tennis balls and two books, "Strokes of Genius, Federer, Nadal and the Greatest Match Ever Played," and "We are our Mothers' Daughters," by Cokie Roberts.

I loved being with the three of them and watching them together. Feeling their love for me and mine for them lifted my spirits.

I was supposed to come back to Diane's around 4, but I lollygagged until about 6:30, when Ben drove me back to Boston. I hope to get home next weekend too.

I was expecting a chimerism result today, showing the percentage of donor to me. The last time they did the test, I think in early April, I was 100 percent donor. There's no reason to expect any change, but I am skittish due to the graft rejection I had with my previous donor. So I started to get stuck in my head: What if my symptoms really signal something terrible going on, even though Melissa says the nausea is probably due to what my body went through combined with the large number of pills I take every day. And what if my pokey platelets are  a sign that something is really wrong (although everyone says this is temporary).

Anyway, I practiced my breathing and other distractions, and when it got time to meet with Melissa today she said the chimerism isn't even in. My platelets were 12 today so I needed a bag. My hematocrit was 33, which is great, and my white blood count was 6.7, which is also a good sign. I still need to go to the clinic Wednesday and Friday this week.

Tuesday, May 5, 2009

Bye-bye hospital, hello home (I hope)

They sent me home to Diane's on Saturday. I hadn't had a fever for about five says, so they were satisfied that the infection had backed off. I do have a bad cough, but they said it's probably just irritation from the infection. So they gave me cough medicine with codeine and said not to worry about it. Also, I'm still losing weight and having trouble keeping food down. Solution: take a little Ativan before meals, getting hungry and sleepy at the same time. I do have some Compazine, but it doesn't work as well.

Melissa said that if my bloodwork looks OK tomorrow, I might be able to have clinic visits twice a week, Monday and Thursday, instead of Monday, Wednesday and Friday. If I drop down to twice a week, I could go home for the weekend, which I really would love to do.

Diane and David are being great. They wash my clothes, make my dinner and are very helpful in terms of both my emotional and physical needs. But I want to go home!