Thursday, April 22, 2010

Bluebonnets on the way~ Lake House Retreat

TEXAS BLUEBONNETS! Nothing Better..........


Our Lake House Retreat. It is my favorite place to go and rest. AJ loves it too. We splurged and put fancy adjustable beds up there just like we have a home for AJ and I. Now we never want to go home. Red wine, moon, stars, peace and quite. God's beautiful nature.
Today is a good day, I am driving! Blood counts keep climbing, not going to do the whole chart thing, but here are the new numbers.

WBC 4/12 5.0, 4/14 7.6, 4/16 10.3, 4/19 9.0 (normal 4.5-10.5)
RBC 4.68 4.62 4.56 5.02 (normal 3.80-5.20)
HGB 14.1 13.7 13.5 15.1 (normal 12.0-16.0)
PLT 235 210 207 139 (normal 150-400)

As you can see, they continue to rise. These are amazing numbers for day 28, these are God’s numbers! Amen.

GVHD seems to be splinting hairs over here. Can’t quite decide, but knows that it is NOT full GVHD, it is still engrafting syndrome and they have to watch it. As far as I am concerned, I have claimed the victory and I don’t plan to be getting any more of that stuff. It can be wicked.

Went up to the lake a few weekends ago and the weather was beautiful on Saturday, not so much on Sunday but it was just great to get away. The flowers were beginning to bloom and AJ finally got to show me my Christmas gift?! Well he had to order it before the EOY, but it finally came, the NEV tax credit. Neighborhood Electric Vehicle! Basically, it is a 6 passenger golf cart. It can be driven on any road in Texas as long as the speed limit does not exceed 45 miles an hour. The only thing about the NEV that is my Christmas present is its color….RED! (he could have ordered blue his favorite color, but got RED for me~smart guy!)I do think it is fun, and it will be nice to run to the Happy Cooker this summer for pancakes! My goal is to sell it to someone in Horse Shoe Bay that really needs a cart….but maybe not…it is PRETTY CUTE!

AJ & I have always wanted a family get-a-way place.

God is good!








Friday, April 9, 2010

Allo~Transplant Lesson 101-103...or so

First let me say, I feel so much better…so all that worry is GONE! The hospital visit was actually good for me. They were able to pump me with strong antibiotics, blood, and other stuff. My mouth, throat and stomach are pretty much healed…and I can swallow again! My meds are cut down, but I am taking steroids (looking forward to the “moon face”) now to keep the GVHD syndrome (I’ll explain that later) under control.

Second, the question; “stem cell” transplant verse “bone marrow” transplant.? It does sound confusing but simply put, they are one in the same. I have copied some technical info from a site that might explain it better.

“A stem cell transplant is a medical procedure in which diseased bone marrow is replaced by highly specialized cells, called hematopoietic stem cells. Hematopoietic stem cells are found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because blood stem cells are typically what are being transplanted, not the actual bone marrow tissue.”

Now, a little more…last summer I did an “auto” (my on stem cells)…didn’t work for me. So this time I did an “allo”…donor cells, a little more risky. Here is some more technical jargon. It also gets into the GVHD question.

“In an ALLO transplant, another major risk is that the donor’s cells will recognize the patient’s body as foreign, causing graft-versus-host disease (GVHD). GVHD may be a serious complication of allogeneic transplants and can be fatal. Other side effects may include liver problems, diarrhea, infections, and rashes. However, GVHD can also be a benefit, in that the donor cells can recognize the cancer cells as foreign and destroy these cells, a mechanism that is one of the major reasons why ALLO transplantation generally works so well over the long term. The risk of GVHD can be reduced with exact HLA-type matching and the use of preventive drugs.”

Now don’t get all excited about the “fatal” word…they have to tell you that because it is true, but that is NOT the road for me. As you can read in the last sentence, HLA-type matching and preventive drugs are great help…and we all know my sister, Linda Joan, is a “10” the highest match available! Not to mention, the blessings given over those aggressive little suckers! You can see it my counts. The next question.

I have attached a summary of my labs.

Day +1

Day +2

Day +3

Day +4

Day +5

Day +6

Day +7

Day +8

Day +9

Day +10

Day +11

Day +12

Day +13

Day +14

LAB Date

24-Mar

25-Mar

26-Mar

27-Mar

28-Mar

29-Mar

30-Mar

31-Mar

1-Apr

2-Apr

3-Apr

4-Apr

5-Apr

6-Apr

WBC

2.4

1.3

1

1.1

1

0.6

0.4

0.2

0.2

0.2

0.7

0.7

1.1

RBC

3.33

3.48

3.35

3.59

3.45

3.41

3.47

3.16

3.13

3.1

2.71

2.71

3.55

HGB

10.3

10.7

10.5

11.2

10.6

10.06

10.7

10.2

9.7

9.5

8.5

8.5

10.6

PLT

50

49

45

43

29

22

17

9

52

42

37

37

63

*

ALBUMIN

3.5

*

3.5

*

*

3.5

*

*

*

3.5

*

2.7

*

*

Day +15

Day +16

Day +17

Day +18

Day +19

Day +19

Day +20

Day +21

Day +22

Day +23

Day +25

Day +26

Day +27

Day +28

LAB Date

7-Apr

8-Apr

9-Apr

10-Apr

11-Apr

12-Apr

13-Apr

14-Apr

15-Apr

16-Apr

17-Apr

18-Apr

19-Apr

20-Apr

WBC

1

2.2

2.5

RBC

4

4.29

4.29

HGB

12

12.6

12.9

PLT

110

188

193

ALBUMIN

3.2

*





It talks about WBC (white blood cells, fight infections), RBC (red that take oxygen out to the body), and PLT (platelets that clot your blood), and some other stuff…but those are the 3 most important cells. Those of you who can’t, basically it tracks my stuff showing the fall of my immune system after the chemo and transplant to nothing. That is why I cannot be around or go any where, and why they rush you to the hospital at any little show of infection. The miracle is that it takes about 14 day for stems cells to start to grow. My labs started an up turn on the 14th day! Thank you Lord, Amen! And they are continuing to go up. My platelets are already well within the normal range, at 193. I only made it to 147 from my last transplant; bottom of the range is 150. Amen! So I have 2 of the 3, just waiting on the WBC presently at 2.5, but WILL continue to get to normal (4.5-10.5).

So what is this rash from? Well it is not GVHD (yet). It is called GVHD syndrome. Big difference; the difference being it is NOT the disease, it is my new cells (sister’s) sending a warning out to my body…”something is not right, but not sure yet.” In other words, the new cells are waking up, and realizing that they are not in a familiar place. This is a good thing! This means the cells are working, now lets just keep praying that my old cells aren’t going to be mean to “big” sister. The treatment is steroids and Prograph (immune system suppression) for now. For how long, don’t know…from this point it is a wait and watch.

GVHD = Graft (LJ cells), Verses, Host (me), Disease

I am in a very happy place right today and going to enjoy it. So please go there with me! The road is still very long, and full of lots of “pot holes,” but I know God is with me and he has purpose for me, I can do this. Going to the clinic really keeps me grounded. I see so many others that are really struggling and I pray for them, who knows that just might be my purpose!...but I don’t need to know. I just need to stay strong in my faith, but most of all become “fearless,” and I gotta tell you…it is hard! But today, my dear friend Barbara sent me a sweet devotional: When I am afraid, I will trust in you (Psalm 56:3) Prayer: Lord, help me to live free from fear as I fully place my trust in You. God is good, sending me this short, simply but oh so direct for me today! Amen.

Also from the clinic, I realize I am so blessed with extensive family and friend support. It is overwhelming to me. It is so heartwarming! Here is a happy photo that I forgot to attach on Easter. Pam came by Easter morning bringing Easter “happys” wearing Mrs. Berry’s hat…and brought and extra one. AJ insisted we wear them to the clinic. What a man my man is! I love him so.