Thursday, June 29, 2006

So Much Pain

I have mentioned this before, but it seems like ever since my diagnosis, over a year ago, I am seeing more and more people suffering with the effects of cancer -- all kinds. When I went to San Angelo back in March, one of the ladies I was working with was just told that day that she might have breast cancer. She was waiting for a schedule to have a biopsy and she still didn't have the appointment by the time I left at the end of the week. Obviously she was upset. I thought for sure I wrote about that here and how she continued to do the training. However, I can't find it in my post, other than a quick mention. Perhaps I wrote about it in my patient's forum. Anyway, I wrote to her a couple of times but never heard anything back until a couple of weeks ago. She did have breast cancer, had a masectomy and is now undergoing chemo. Her first round was horrible for her as she had very bad nausea which even powerful nausea pill couldn't control. Last week she began to lose her hair which really has bummed her out. I have met several people lately in similar situations and it is so very sad. Several of the folks in my patient's forum are not doing very well and, ironically, most of the group of folks that founded the forum are all currently struggling with treatment decisions.

However, the very, very saddest thing occurred this week. A wonderful member of our forum experienced a real tragedy. Her beautiful little 8-year-old niece, Hanna, died from cancer. This little girl put up a three year battle having suffered through many, many rounds of chemo, radiation and two bone marrow transplants. Late last year she was sent home from St. Jude's Children's hospital when there was nothing more they could do. Hanna had a very special relationship with her aunt. Closer than I have ever witnessed and aunt and niece to have. Hanna said they were "cancer sisters."

Last Saturday, after a dream or a vision, she told her family:

"I just can't wait to get to Heaven and ride my big white horse." She said she named her white horse Salvation. Good name, I think!

I am copying what her aunt Debra (but Hanna had always called her Aunt Bebbie) posted to our leukemia forum the other evening. Debra is the lady with leukemia. I am posting two pictures, also. Hanna apparently had been a thin, pretty girl, but the steroids just puffed up her body. I think she still looks beautiful in the pictures. The first is from this May when Hanna received an Awanna's award at her church. The second was taken this Saturday. Debra said that even the dog knew what was happening and was not her hyper self and just stayed there quietly for hours in the crook of Hanna's leg. Debra wrote often of Hanna and posted many pictures. We really came to know this little girl through her aunt. She was quite special.

Her is what Deb wrote last Monday:

Our precious Hannah went to be with the Lord this morning at 9:25. I got to go be with her right after she died. She looked so peaceful and like an angel laying there. I can just see her running into God's loving arms. I already miss her terribly and can't imagine life without her. She has taught me so much in her 8 short years here on earth and has touched so many people's lives here on earth. She has brought me more joy than words can ever say. We had a bond that even I can't describe. She was left a little money 2 years ago when my brother died and she gave $1000.00 dollars to help start a church in a small village in Haiti. She also sent them clothes, toys, jewelry, etc. She had the most giving heart of anyone I have ever seen. Her main wish was for everyone she knew and loved to be saved so she could see them in heaven. I am heart broken but also so glad she is free from pain and now I have the BEST guardian angel. God Bless you all for your prayers and kindness to us during this time.

Hanna told her dad last week, "Daddy as soon as I get to Heaven I am gonna shout GLORY and sing Jesus a song."

Hanna's service was this evening and Aunt "Bebbie" just posted this on our forum:

The service tonight was such a celebration of Hannah's life.Hundreds came and her Drs. and nurses were there and the most beautiful flowers everywhere. She looked like an angel and made such a difference in my life and so many others. I will miss her greatly.

God saw you were getting tired
And a cure was not to be.
So he put His arms around you
And whispered "Come to me"
With tearful eyes
We watched you suffer,
And saw you fade away,
And although we love you dearly
We could not make you stay.
A golden heart stopped beating,
Hard working hands now rest.
God broke our hearts
To prove to us
He only takes the BEST!

Please pray for this family as they deal with the loss of Hanna. She touched many lives including those of us who are members of the CLL Forum who only knew her through the many postings of her beloved Aunt "Bebbie."

Latest Blood Work

Well, thought I would put in a quick update before leaving in the morning for Ohio. We fly into Columbus, OH, in the morning to attend my niece's wedding on Saturday in West Chester, OH, just north of Cincinnati. On Sunday we have a family time there at my brother's home -- miniature golf tournament, BBQ, Lip Sync contest, followed by a bonfire in the evening. Then on Monday we fly back to Austin. Today my energy level finally seemed much better than it has been the last two weeks. Hopefully it will hold throughout the long weekend. Then on Wednesday, chemo again. Followed the next week with a visit to MD Anderson on July 12th. I will have blood work there, but I think those results will be off because that will be the last day of taking Prednisone. Oh well, it will be good to see what advice the CLL expert, Dr. Weirda has to say. He is the one I consulted with last year.

Here are yesterday's results. Most everything that is off, is only just a little off. So even though there is a lot of red, it really still is a good report. The only thing I was really disappointed with was the platelet count. They had been all the way up to 122 the morning of my last chemo. Even so, 81 isn't in a real danger area. The numbers in parenthesis is this lab's normal

WBC 3.7 (4.0 - 11.0)
NEU# 1.4 (3.0 - 7.0)
NEU% 37.9 (40.0 - 74.0%)
LYM# 1.6 (1.0 - 4.0)
LYM% 43.30 (19.00 - 48.00%)
MONO# 0.5 (0.1 - 0.6)
MONO% 14.9 (3.0 - 11.0%)
EOS# 0.1 (0.1 - 0.6)
EOS% 1.6 (0.0 - 7.0%)
BASO# 0.1 (0.0 - 0.1)
BASO% 2.3 (0.0 - 2.0)
RBC 4.46 (4.70 - 6.10)
HGB 15.20 (13.00 - 17.00)
HCT 42.40 (37.00 - 49.00%)
MCV 95.2 (80.0 - 100.0)
MCH 34.1 (27.0 - 34.0)
MCHC 35.8 (32.0 - 36.0)
RDW 11.8 (11.0 - 15.0%)
PLTS 81.0 (130 - 400)

Monday, June 19, 2006

Chemo and Father's Day

Well, that was a strange title for this entry, but it does cover both subjects I wanted to mention today.

First of all I had a great Father's Day and I hope every dad and grand dad reading this, did too.

We all went to church where we heard a terrific message on the importance of father's in the home and the blessings a father receives from his family. Then later we all went out for a steak dinner. Eight of us. The grandkids were well behaved -- AND I didn't have to pay for the meal! My one grandson, Jimmy (oops, "James" now) picked out a blue shirt for me to match his "church-shirt" so that we could wear them together when we go to Ohio at the end of the month. And he picked the tie to match. Actually among the gifts was another tie that I also LIKED very much. I received a total of three shirts, two nice ties, sunglasses, a paid-for steak dinner, a couple of great cards and the best company in the world -- my wife, my two daughters, three grandkids and one son-in-law. (Cindy's husband was out working in the oil fields. He guides the drillers by computer.) So the day included the two most important things in my life - God and family! Can't get much better than that.

This has been chemo week and my buddy, DavidE called the other night to see how I was. He and his wife had been waiting for a posting. I know I should post quicker as I have so many folks concerned over me, but after seven rounds now, there isn't much to say. Still tolerating it well. I did have even more severe "restless leg/foot" stuff going on during the infusions, but I did get a great foot massage out of the experience from Cheryl. She rubbed and rubbed until it finally started calming down. This has been pretty normal chemo week with NO nausea (praise God!) and trouble sleeping but being tired. Moodiness isn't quite as bad, I don't think, but you would have to ask Cheryl to be sure. I know when I read something sad or sentimental on my CLL Forum, I tear up really easy.

However, Friday night to Saturday I did get 12 hours sleep! And that was without overdosing on any medications. I guess my body said enough is enough. That 12 hours was about as much as I had total the days previous. Also, this time, my diabetes is a little more out of control. Several times the glucose level has been over 350 two hours after eating even with an insulin shot before eating (should be below 120). Sure hope I don't end up permanently using insulin when this is over.

A very good piece of news was that my blood work on Monday before starting the chemo was the very best it has been. Only platelets were low but they were very OK at 122 (normal 140 - 440). Here are the terrific numbers with normal range in parenthesis:

WBC 6.1 (4.1 - 10.0) YEA!
LYM 2.4 (0.6 - 4.1) DOUBLE YEA!
GRAN 3.3 (2.0 - 7.8) These are sometimes reported as neutrophils. TRIPLE YEA!
RBC 4.42 (4.20 - 6.30) Quadruple -- ok, you get the idea!
HGB 14.5 (12.0 - 18.0)
HCT 42.7% (37.0 - 51.0%)
PLT 122 (140 - 440) still a little yea :)

Next blood work is the 28th, just before heading out for a long weekend in Ohio, then the next chemo is July 5th followed by an appointment at MD Anderson in Houston on July 12th.

If I could get my energy back, I would feel terrific. I told Cheryl on the way to church this morning that I didn't know why I was feeling so drugged. Oh wait, I am so drugged. Everyone says I look terrific (they must like seeing me fat again). Wished I felt as terrific as I look. I think I soon will!

I have been thinking about my next posting all week and trying to phrase it in my mind to do it justice. I want to comment on a man who makes a difference in the lives of all people with CLL. It needs to be good.

Wow, need to get to bed. I am attending a conference here in Austin all week and I don't have to be there until 9 a.m. so I get a little bit of a sleep in. Even though that is two hours later than I usually go in to work, it will be the height of rush hour so I will really only save about an hour.

Have a great week, everyone. And, once again, thank you so very much for your concern, prayers and support. It means a great deal to Cheryl and me. Please say a prayer for my many friends who are suffering/fighting with this same disease. A few of them are having great difficulty right now and it is rough on them and their loved ones.

Wednesday, June 07, 2006

That Was a Short Break!

Here I am in El Paso again. It is hot! 102 the last two days. But they say it is a "dry heat." Well, so is a campfire.

Monday, before I left to fly up here, I saw my Dr. again and had more blood work. I won't post that here other than my platelets came up some and my RBC went down some. Other than that, nothing much changed. However, after seeing him I now have two more chemo rounds scheduled. Since I am in El Paso all week, the next round will be next Monday. Then again on July 5th. I will also extend the Prednisone for an extra five days so I can decrease it slowly rather than the sudden stop.

How did I happen to agree to this? Well, as you know, he wants a better response but I have been happy with the good partial response. However, a couple of weeks ago he had ordered another CT scan of my chest, abdomen and groin. He left out the neck this time. At first I hesitated to do this because of the high dose of radiation that it takes to do this test -- equivalent to 400 chest X-rays! But, since my neck lymph nodes went down after the first chemo round, I thought this would show him I had a better response than what he thought. Well, I was wrong, sigh. Although all the nodes had decreased since before we started chemo, they only went down to half or some to 1/3 of the original size. There are several that are close to 2 cm x 3 cm. And I still have quite a few in the lungs. So, because of the fact that he said he was more pleased than he had been, that he didn't suggest FCR (the one I don't want to do yet), and the nodes that haven't gone away, I agreed to do two more rounds of what I have already had six rounds. He said he wants a more complete response. He will then do a bone marrow biopsy in August.

Well, the fact that we are doing more chemo made Cheryl happy because she really wants me in a remission. As my daughter, Cheri, said, "when Mom is happy, everybody is happy." I was absolutely fine with the decision in his office and on the drive back to work. But then some disappointment set in. It was nice not having to do chemo for awhile. At least I know I tolerate this well, so two more rounds won't be bad. I just know I will have a couple of more times with my steroid friends. More sleepless nights, more fatigue and more moodiness. Watch out!

Also, in Monday's mail I got a letter from Dr. Weirda's office at MD Anderson. He is the CLL expert I saw last year for my second opinion. They automatically made a follow up appointment for July 12th. I will have blood work there in the morning and then see him in the afternoon. That is good timing because I will get his opinion on what I should be doing now after these two extra rounds. However, I will still be on the Prednisone and that will throw the blood work off some. It will make some numbers look better and some worse.

I noticed on the CT Scan report when I was reading it here in the hotel, that as noted last time, I have coronary artery calcification. My oncologist never mentioned this and I don't know how significant this is. I will need to ask when I get back.

I will also be making an appointment with a dermatologist. Skin cancer is a danger with this leukemia, particularly after chemo. Although not as much danger as with FCR. I have a spot on my arm that has appeared in the last couple of weeks. When I asked him about it, he kind of pooh-poohed it before he looked at it. When he was examining me, he did look at it and said a dermatologist could cut it out. Since my dad had lots of skin cancers with this leukemia, I will definitely go.

My energy level has been on a roller coaster ride. Last Friday I felt great all day, including after driving to Ft. Hood after work to get Rx refills, a haircut and some grocery shopping. I thought, FINALLY. Then I slept a lot all weekend. Yesterday it was pretty good again and then today a little on the down side. Oh well, it should be pretty good just in time to start over on Monday. I came back to the hotel tonight and slept for three hours. Just went and ate and about to go back to bed for the night. I never sleep that well the first couple of nights in a hotel.

Pray that these next two rounds will give me a more complete response and I can knock those nasty cancer cells running all around my body into submission.