Saturday, February 14, 2009

Quite a week

First of all, I am a little late, but technically I have 20 minutes left here in Texas, so Happy Valentines Day. I hope you all had a good day. Cheryl and I actually went out for dinner and it was her idea! Those of you who know us know how unusual that is. About the only time we go out to eat is on Sunday after church. Even many of our wedding anniversaries we have stayed home. So when she suggested it, of course we went. Over the years I have pretty much stopped asking because 99% of the time she would rather stay home. Here are a couple more pictures of our grandson, Gavin that have a Valentine theme.

This week was a huge milestone in my Mother's life. She entered a nursing home. She is 94 years old and although she is in overall general good health, she has been getting much weaker and has required more and more care. She reached the point where she couldn't get in the shower and had trouble dressing herself. She lived most of the year with my older brother in upstate NY and it became too much to try to properly meet all her needs. She used to come down here from January to about May and then she would go spend a couple of months with a younger brother in Ohio and then go back to NY which she always considered home. A few years ago we discussed having her move here, but she always wanted to get back "home." She was too weak to come down this year. She is in her wheel chair most of the time and walks very little with her walker. With my lack of strength now, if she had fallen I would have had to call for help to get her up. I think my brother found her a terrific place. She has her own room, and was able to bring all her own furniture. Before she went to look at the place, she told me it was important that she could bring her lift chair, her nightstand, her Bible and Jimmy's picture (our grandson who lives with us. They really bonded last year). Well, she got her wish. She said she really likes her room very much, the entire staff is very nice. The only thing she seemed to be having some trouble with is the food, but then she barely eats anyway and we have had trouble getting her to eat properly for a couple of years. She even attends physical therapy there, so that is good. I pray she continues to adjust well to her new surroundings. I know all the relatives up there will visit regularly and she won't be forgotten.
Sunday afternoon I went to Corpus Christi with Cindy so I could watch Gavin while she presented at a conference. I was able to take him to a beach for the first time and we also spent a lot of time walking around the waterfront sightseeing. I took TONS of pictures with my new camera. Here are just a couple:

When we got back home, I was wiped out, like Gavin was on the waterfront. The day after our return, I wasn't even dressed when Cheryl got home from work. But it really was worth it. Two places I have always loved are the mountains and waterfront - ocean, gulf, or lake.

Health wise I am hanging in there. The IVIg infusion seems to have pretty much cleared up the sinus infection. Last Saturday night/Sunday morning I woke up in the middle of the night with my chest really hurting. I even got up and took an aspirin, just in case it was my heart. Well, as I kind of thought, it was a chest cold starting as I could rapidly feel it getting congested. I started coughing some and coughed into the afternoon. I was afraid it was going to ruin, or cause me to cancel the trip to Corpus Christi. However, by Sunday afternoon it wasn't getting worse and by Monday morning the cough was gone! Every once in a while I can feel it trying to make a comeback as my chest will feel heavy and I feel stuff rattling around, and then it is gone again. Kind of a mystery. But then again, everything with this leukemia/lymphoma seems to be a mystery. My only concern is that twice now I have had lung infections with no real symptoms. Once pneumonia and once E. Coli. that only showed up on staging CT scans. I just don't want to get paranoid about it.

Finally, Cindy found out about a beautiful baby contest on "Live with Regis and Kelly." First prize is $125,000 college scholarship. The only problem was, she read about it late and the deadline was Friday at 5 p.m. eastern time. So she came over and I took over 100 pictures of Gavin. It was difficult trying to choose which one to send in. Some were funny, most were adorable. Here is one fun one, one of the many cute ones, and then the one she submitted.

After we submitted it, I heard that last year there were over 50,000 submissions. Oh well, we had fun. Besides, I already know he is the World's Cutest Baby. I don't need the judges to tell me that.....but, it would be nice if they did.

Tuesday, February 03, 2009

Naps - Not Just For Preschoolers Anymore

"A nap is only nice when it's a luxury and not a necessity."

When I first read that statement somewhere a couple of years ago, I thought, "exactly!" One of the most common complaints those of us with CLL have is fatigue. Fatigue is very different from simply being tired and it is very, very frustrating. Frustrating for those of us that experience it and frustrating for those who have to put up with us. It doesn't matter whether the patient is in stage 0 or stage 4, the fatigue seems to affect most everyone -- but not all. Most of us feel like this:

On, I did a search of the word fatigue and there were 237 separate threads with multiple posts that had the word fatigue in them. Here are just a couple of samples of comments:
"It's a way of life for me. You tell a 'normy' how tired you are and they just don't understand. And since I'm in remission it can't possibly be leukemia! Hey, just because there's gas in the tank doesn't mean it's good gas"

"Can u spell F A T I G U E????.........that is my new normal......I have decided I don't know what being "full of energy is anymore" is something I have to deal with"

"And I was always so damn tired! When I consulted my family doctor about it he dismissed my occasionally profound fatigue as simply needing more exercise...Even post-diagnosis, when I discussed how I felt with my oncologists, they told me to spend more time in the gym and get into better shape...I was not amused! Gradually, I was being exhausted by the smallest effort of even very basic tasks and climbing stairs became a chore. By the time I reached the top steps of even one flight my legs would be burning like I'd been in the gym doing squats."

"Some days horrible, next day OK. Doesn't make sense to me."

"Somedays I can go and go like the energizer bunny, other days I can barely drag myself out of bed. I hate it, it makes me nuts."

Just get some exercise. Get up and do something. Get more rest at night. That is common advice given to many of us. In fact, it is good advice to combat normal tiredness. BUT, it does nothing for this type of fatigue, in fact, one researcher says it can make it worse.

What causes it? The doctors aren't sure, in fact, MANY doctors and even oncologists dismiss the complaint as being trivial, or non-existent. If they can't do a blood test for it then it must not be real. I have even read comments from other CLL patients who don't experience it dismiss it from others and say we just need to get up and get moving. Fortunately it is becoming recognized more and more as legitimate and is now in the list of B symptoms for those of us with CLL.

Dr. Michael Keating, world renowned CLL expert says on his site:

"Most recently, we have recognized that many new symptoms appear to be related to CLL. One of the more common complaints of CLL patients is the presence of fatigue; patients describe themselves as drained from energy. They require multiple rest periods during the day to perform their activities. This reduced energy does not appear to be necessarily related to the stage of the disease although it is commonly found in the early phase of CLL and appears to be more noticeable in women. As with fatigue, patients with CLL will often complain of difficulties in concentration and in performing complex tasks. The exact cause of these symptoms is unknown although we are actively studying the potential cause of the symptoms. The symptoms may result from an immune reaction by normal lymphocytes to the persistence of the CLL cells.

The ability of CLL to interfere with patient's performance, ability to work and daily responsibilities and activities is very important because patients with this disease can live for many years and need specific recognition and intervention programs to reduce the burden of leukemia on their quality of life."

The National Comprehensive Cancer Network published a 39 page PDF document titled "Cancer-Related Fatigue." Unfortunately, they don't allow any copying of their document, but you can find it by clicking HERE. It has a lot of good information. Their definition includes the fact that cancer related fatigue is physical, emotional and/or cognitive tiredness or exhaustion that has nothing to do with any actual physical activity but interferes with normal functioning. They also say it doesn't compare to fatigue in healthy individuals and that it is more severe and more distressing and is less likely to be relieved by rest.

My fatigue was worse before my chemo treatments. It comes on suddenly and can be overwhelming. I remember one day when I was too tired to drive and that is so very rare that anyone else drives when I am in the car. We were heading home and were coming up to our street when I felt the wave wash over me. By the time we turned the corner and went a block and a half down the street to our house, only 1/10th of a mile, I was asleep.
After chemo, the fatigue never did go away. It was a different type during chemo. I would describe it as worn out, I guess. But now as my counts are going up again, it is getting stronger. I can be feeling fine one minute and then the wave washes over me and I just need to sleep. I take up to three naps a day and sometimes more. Yesterday I had my IVIg infusion and I came home and Cheryl was outside cutting down our mostly dead Jasmine that grows up and across the trellis on our patio. I was feeling fairly well so I went out to help. I worked less than an hour up on top of the trellis cutting and pulling off the vines and I was absolutely and totally wiped out. I barely got down the ladder. I was out of breath for about 30 minutes after I quit and had no strength. My red cells are almost up to normal so it isn't lack of oxygen there.

The fatigue takes away the motivation to do anything too. Before Christmas I was trying to get the outside lights up before our annual Christmas party we have at out house for our Sunday School department. I had a week to go with not much else to do. I just couldn't get out and do it. There were a couple of days I wasn't even dressed when Cheryl got home from work. It is very frustrating. Fortunately the day of the party I had a surge of energy and went out and finished it up by three that afternoon, although I didn't put everything up. My two grandsons did the gutter and roof line lights for me the week before. All except for the two tall peaks which scared them. So I did those. Going up to the second peak I could barely make it up the ladder. I used to do this all myself.

Lately it has really bothered me that I don't get things done (but not as much as it bothers Cheryl, I am guessing). I have been trying to self evaluate if I am just tired, really fatigued, lazy, or even depressed because depression is very common with cancer. I decided I am not depressed because when I was trying to figure out if I was, I didn't cry. HA!

I had my monthly oncology appointment yesterday along with my infusion. The results of my blood test from a week ago showed that my lymphocytes tripled since November 1st. They are definitely on the move again. He said we will have to keep a close watch on this for the next couple of months. My IgG levels were low which explains the sinus infection that started over the weekend. That is giving me both toothaches and an earache. Ah the joys of cancer.

Well, I wasn't depressed before I wrote this, but now....