Wednesday, February 06, 2008

Stable -- It's Not Just For Horses

I went to my monthly oncology appointment and got the results of a CT scan from last week. The bottom line, my nodes have remained stable! That is pretty amazing because the last time they had doubled. Yes, they are still wide spread everywhere, but mostly have not grown at all, and one was reported to have shrunk a little. It is so weird because I felt like my neck nodes had gotten bigger just since the scan, but my doc rightly pointed out that they will have a tendency to wax and wane. My blood work also remained stable since last month. The platelets dropped a little, but not much and are still just above 100.

The CT scan did say that the discs in my lower spine had deteriorated more since last time, but I knew that. I am getting up out of my chair and walking like an old man. And I ain’t old…unless you ask my grandchildren…and my kids…and my, oh, never mind.

I forgot to report other great news from last month. Although I lost another 1/4 inch in height (that's over two inches since I got out of the Air Force), my osteoporosis actually improved! It is still in the severe danger of fracture range, but barely. The doctor was very pleased and so am I. The weekly Fosamax pill is doing what it should.

Cindy's husband also had pretty good test results. The doctor saw no tumors and only found inflammation. He gave him antibiotics for a possible infection and if the bleeding has not stopped by next week, he will be doing other testing. Cindy was very disappointed that he didn't do all the tests at one time like she thought he would. Pray the antibiotics take care of this and the scare is over.

- My sister-in-law's sister's husband died of cancer Monday. He was only diagnosed in late November and it spread very rapidly.
- David E's prostate cancer is on the march and he will be trying a different treatment (see the link to his blog on the right). Pray for him, too.
- Karen, (The Adventure's of Cancer Girl link on the right) who has had multiple myeloma since 2005, has been undergoing treatment now for some time. She has gotten results, but not all that she deserves. She is the mother of a toddler (WCK - world's cutest kid) and her blog is fantastic. She has been able to keep a fantastic sense of humor. Obviously she could use some prayer also.

Yes, cancer still sucks!

(Wow, four entries in a week - even though three were all on the same day, I did done gooder, huh?)

Saturday, February 02, 2008

Health Update

I have continued to get the IVIg infusions and they really have worked as I still have not had any new infections. I still struggle with headaches for a couple of weeks after, but I don't think it was as bad this time. The main thing I don't like is that it takes all day.

The great news is that my IgG levels have really climbed. In fact, I may not need this next treatment and we made the appointment for six weeks out instead of four. The last blood test showed the levels all the way into the normal range (more than double what the level had been). I really thought we would skip this last round. However, my doctor thought the test was done too close to my last infusion and that it was just a spike and not an accurate reading. This time I will have the test two days before the scheduled infusion and then the results will be back by the morning of my scheduled infusion. If the level is still up, we will skip it and just monitor my levels. My doctor at MD Anderson said once they reached 700 to spread the infusions out to just be able to maintain that level. My other blood tests looked pretty darn good. My platelets have stayed above 100 for two months now. I did read somewhere that IVIg can also raise platelet levels. However, most of my tumor load is not in the blood, but in my lymph system and bone marrow. My nodes are continuing to grow and he ordered a CT scan to check on them. I have such mixed feelings over getting this test because of the radiation and there is a lot of controversy, even among doctors, over the advisability of getting them for this disease. I will get the results at my monthly appointment on Monday. I would guess that either he or my doctor at MD Anderson may want another bone marrow biopsy soon. Almost a year and a half ago my marrow was 50% infiltrated with the cancer cells (not sure I stated that properly).

My MD Anderson follow-up appointment was changed to the end of this month. Dr. Weirda will be out of town the day it was scheduled, so they had to reschedule. That's OK.

I seem to be pretty much holding my own. The only real difference I notice is the increase in my lymph nodes and I am MUCH more stiff and sore in my joints but I don't think that is related to the leukemia/lymphoma. Hard to say for sure. When I get up out of my chair, it is a struggle and I can barely move until after I have taken 10 or 15 steps. I know sometimes when I have gone shopping, I feel like I can barely make it around the store. Oh well, at least I can go to the store.

Recently we lost several members of our on-line support groups to this stinking disease. One of those was a young mother of a toddler; another was a father of a nine year old boy. Several others who's death was no less tragic and too soon. Also, the gentleman that was a former member of my church and with whom Cheryl and I visited at MD Anderson in November died. He never recovered from his transplant he had last May. He never did get home. One of the founders of the CLL Christian Friends web site was just diagnosed with lung cancer in addition to his relapsed CLL. His wife also has a different cancer that has come back. Another member about to have a stem cell transplant is putting that on hold because tumors from another type of cancer were discovered and they have to deal with that first. A wonderful lady who is a member of my Sunday School class had a mastectomy and is now undergoing chemotherapy. (She is handling it beautifully so far.)

Cancer SUCKS.

What Happened to January?

Not sure how it can be February already. It sure seems like it was just Christmas. I really have been busy -- I think. We had a great Christmas with our girls and grandkids. Then we had our usual wild New Year's Eve celebration. Cheryl went to bed about 9 p.m. and I watched TV. At 11 p.m. I whispered "whoo-hoo" when the ball in Time Square lit up 2008, then said "whoo-hoo" again when it reached midnight here (I think I was still awake). That has been our tradition for about 30 years.

The only difference this year was that my killer dog, which I adopted last August, spent the night shivering in my arms -- terrified by all the fireworks being shot off in the neighborhood.

In fact, I had a difficult time getting him out in the yard even the next day. Unfortunately the carpet paid the price and Cheryl threatened him with returning to the pound. I can't wait for the 4th of July celebrations. Just yesterday we had a new back door installed that has a doggy door so he can come in and go out at will. The old door was almost all glass, but the bottom core was rotting from where it used to get wet before we had the patio covered. It needed to be replaced so we did the doggy door at the same time. It was funny trying to teach him to use it. I got stuck part way in it trying to show him how. (Not really)

Of course, now that he can come and go as he pleases, I will get even less exercise getting up to let him out and then getting up to let him back in. We will still have to go for our walks down the street which he gets really excited about!

On January 4th, Cheryl's sister, Diane, and my Mom flew down from upstate NY. Diane was divorced this past year and really needed the break. We were both very glad to have her here, but unfortunately she had to go back on the 14th to go back to work. She always helps out so much when she is here. Last visit she helped paint two rooms plus some other projects. This time she helped us get all the Christmas decorations put away (we have so much we have a separate storage shed full, just for Christmas decorations), washed some windows, trimmed some bushes and still had some time to do some sun tanning on the nice days. I need to have her come down at least once a month.

Mom will be staying with us for a few months. She is now 93 and much weaker than when she was here two years ago. It is a very good thing I am not working because I would not want to leave her very long in the house alone. She still gets around the house with a walker, but barely. One morning, Jimmy forgot his morning medication and I had to take it to him at school. Mom had not been getting up until after 10 a.m., so I decided to take the time to stop at the grocery store as long as I was out. I got back to the house at 9:20 and Mom was stuck in the bathroom on a stool we had put in there for her to sit on in front of the sink and mirror. She had gotten ill in the night and had gone in to get cleaned up. She had a pain in her left side and couldn't get up because it hurt too much when she tried. She had been calling for me and she didn't know I was not home. I felt horrible. I won't do that again! I ended up buying a lift chair from SAMS Club because she couldn't get up off any of our chairs. With my bad back, I was afraid I would really hurt it if I had to help her too much. Now we have pretty much settled into a routine. Her mind really is very sharp and it it wasn't for her horrible arthritis and bad knees, she would be in fantastic shape.

Cindy has been traveling quite a bit so I have also been watching Jonathan and taking care of their dogs. She is still struggling with morning sickness -- morning, afternoon and night. Her allergies have also been terrible. "Cedar Fever" is really bad here for folks with allergies from about Christmas until mid February. She is now up in Amarillo with her husband as he is going to have a medical procedure on Monday that requires anesthesia. He has been having difficulties for a couple of months now and, like a typical guy, had put off going to the doctor. Now it is really bad and they are going inside to look as the doctor suspects a tumor. Of course they are both very anxious over it. She flew up there last week to go with him to the specialist. The doctor wanted to do the procedure the next day, but he is a driller in the oil fields and he said he HAD to be to work that night. He needed time to get a driller to cover for him for 24 hours. They should know something Monday afternoon when the procedure is completed.

Wow, and I had pictured in my mind that when I retired I would be spending many days fishing.Well, since I don't get away from the house that often, perhaps I should try this type of fishing.

Well, I think that is all the news that's fit to print and some that ain't.

I Am Certified by the Federal Government

No, not certified crazy, although, over the years, many people have told me they thought I was certifiable. First, the government certified I was old as I started getting Social Security retirement benefits last September at the ripe old age of 62.

Now, today in the mail, I received a letter in the mail. I was approved for Social Security Disability on my FIRST TRY!!! I have been certified officially disabled.
(Click on these graphics to see the animation)
When I retired September 1st, I applied for disability at the same time I applied for my regular Social Security payments (I turned 62 last August). I did retire earlier than I had planned because continuing to work was just too difficult, particularly with all the travel I had to do and instructing all day in a classroom. Most of the time I felt like I was barely functioning. We figured that as long as Cheryl was working we wouldn't have any problem with me just getting the reduced rate SS retirement payments. I really wasn't going to apply for disability, but when I was talking to the guy at Social Security when I applied for the regular retirement, he said I really needed to go try for it. Everything I read, I figured it would take at least two to three appeals and then maybe even a hearing with a judge. I wasn't too worried about waiting for payments because the regular SS benefits began right away for September. I very carefully filled out all the paperwork and had a copy of every blood test, bone marrow biopsy, CT Scan, bone scan, I had gotten since the year before diagnosis when I was diagnosed with Type II diabetes. I had reports of the diabetes, osteoporosis, arthritis, deteriorating spinal discs, and of course the CLL/SLL which is the real reason I couldn't keep going. I believe they also contact all the doctors I had listed. Even with all that, I didn't hold much hope. What a pleasant surprise. I really don't know if their decision was based just on the CLL/SLL or a combination of everything.
They determined my disability date as August 23, 2007. I only worked one day in August, and that was the date. So, to get the payments, you have to be disabled five full months and then the payments start the next month and that works out to this February. The only drawback, and it is very minor, once I have been getting payments for 24 months, I will become "eligible" for Medicare. Now for many folks that is a good thing, but my military insurance is so very good right now, I don't want it, but I will have to take it and the military becomes secondary. It also means I will have to pay for Medicare part B as the military insurance requires that. So, I will have that monthly expense. However, as Cheryl pointed out, I would have had to do that starting that August when I am 65 anyway and it is only six months sooner. In the meantime I will be getting an extra $350 a month more than I am getting for regular retirement right now, which more than offsets the monthly part B cost (currently $96 a month).
Disability payments must be reviewed every so often as sometimes people improve and can go back to work. There are three categories they put people in. The lowest is people they will review every 6 to 18 months. However, I have been put in the "improvement not expected" category and I will be reviewed in five to seven years. Lord willing, I will still be here for that review!

This extra really helps because when Cheryl retires in a couple of years, we will need everything we can get. We already have told the grandkids only a couple of years left of nice Christmas gifts from us and then it is McDonald's gift certificates (if they are still $5.00 then).
Hmm, don't know why the pictures aren't animated until you click on them.