Didn't Reach the "Fork"

As promised a recent photo! August 30, 2010 Terry is 55!


Sorry for the long wait, but it looks like I haven’t made it to the fork in the road yet. Some of you might remember, or you can read back, basically…after this last biopsy (Sept 8th), I was to be at a “fork in the road..” One way would be remission, if not it would be the other way, back to looking for a different treatment. Well, according to my last test, I am at neither place just yet. That is GOOD news. I really don’t want to hear, “this treatment is not working.”



Last June my marrow showed 60% plasma cells (plasma is a nice word for cancer), and now I am showing only 30% plasma cells. Now, while that is not “remission,” NE status (no evidence of cancer cells), it is still very good news because it does show that my present treatment IS WORKING. Amen! I am not yet in remission but I still could get there in a few months or so. The most important thing is the Velcade is still working and killing the cancer cells. It is just taking a little longer. Right now I am finishing my 4th cycle of chemo and I am not sure if I will take a 5th or do a break. I am sure they will be taking another biopsy within a few months to see where I stand.




I do feel great. I have very little pain now, just tired, but that is to be expected. So keep praying for remission. I know it is coming. My blood is 100% donor, and my marrow is 92% donor. I didn’t realize that there was a difference between the two. So we are waiting for those last few bad cells of mine to get killed off ,out of the marrow, and we will be in good shape.



Here is some fun news! AJ, Lazar and Teal left for Germany last Wednesday for 10 days. They are attending the 200 anniversary of the Octoberfest, and their hotel is right in the middle of it all. Between the 3 of them, liters and liters of beer are being consumed, along with shank meat and kraut! I estimate a substantial weight gain for all. I talk and text with AJ daily and they are having the time of their lives. Lots of male bonding! Keli and I are not so sad that we were left behind, because BEER is not our thing. When they get back, I will post a photo. This is a trip that AJ has been planning for years. I am so happy he was able to make it, and I pray for their safe return.



Love to you all. T.


What is faith?
"It is the confident assurance that something we want is going to happen. It is the certainty that what we hope for is waiting for us, even though we cannot see it up ahead." Hebrews 11:1

Miracle~Absolutely No Matter the Results

First let me tell you I am feeling really good. Stronger everyday. Cut my pain patch in 1/2 back to what I was using when I started and my blood counts were really up yesterday. It has been two weeks shy of six months, 1/2 way to the year!

A few weeks back I saw someone that I haven’t seen in a long time. She said to me, “ you are already a miracle.” It was an odd thing for me to hear. Was I? I have incurable cancer, I am not in remission, I have been categorized as critical….ok, how is that a miracle?

If you know me and have kept up with my blog, you know I depend strongly on my Christian faith. I believe in prayer and that God does answer prayer. Maybe not the way I want, but nonetheless, he is here with me and does answer me. After all, I have and excellent physician team, I was in remission from my auto-transplant for at least 4 months, I have responded extremely well to all chemo treatments, I got just the right amount of GVHD….my prayers (and those of the hundreds that are praying and sending good thoughts with me), are being answered!

I am at a critical fork, remission or, I still have the nasty aggressive cancer and need more treatment. I have finished my 3^rd round of chemo and yesterday they did testing. I will know something preliminary and the bulk of the results next week. Many of you went with me on a 21 daily prayer through this last chemo, to ask, believe and receive remission. I nicknamed this round, REMISSION ROUND and claimed its victory. Today is day 21! Amen.

What if it is not remission? Did God blow off my prayers? Am I not a miracle? Hard questions….I want you all to know that God does not blow prayers off. God is good! If you allow him he will be with you always, as he is with me. God did not bring this cancer to me. We live in a ungodly, unfair, and injustice world. In closing I am going to quote Rabbi Harold S. Kushner, from When Bad Things Happen to Good People, “And what about your prayers?...Were then left unanswered? You face a situation that could easily have broken your spirit, a situation that could have left you a bitter, withdrawn…incapable of responding to promise of being alive. Somehow that did not happen. Somehow you found the resiliency to go on living and caring about things. Like Jacob in the Bible, like every one of us at one time or another, you faced a scary situation, prayed for help, and found out that you were a lot stronger, and a lot better able to handle it, than you every would have thought you were." I have read a lot of self help, spiritual, and cancer books, but these few words really hit home for me.

In short, I love my prayer time. God has answered my prayers just by letting me know that I have such a strong multi-religious community supporting me and I know that I am not alone. And yes! I am already a MIRACLE! Amen.

I will post results soon….within the week! Love to you all and I will post a new family photo. I am now 55! Yeah.

July 23rd, 4 months

Sorry it’s been so long since my last entry. Things have been busy and at times difficult. I have a lot of shakes and tremors, so couldn’t type. Also very, very fatigued.

Fantastic news! A.J and I celebrated our 35th anniversary on June 14th. I wish such happiness for everyone.

On not such great news, June 23^rd, 90 day check up after the transplant, my bone marrow biopsy showed cancer still present. I don’t know how much, the percentage… but the doctor said it wasn’t important to focus on that, at this time. The ALLO transplant does seem to be working but either the cancer is reproducing more quickly than it is being destroyed or my body may need more time to kill and build up better abnormal cells. They are just little babies in there and not to many of them either!

I have been released back to my oncologist, Dr. Dice, and both my doctors, LesMaistre and Dice, have formulated a new plan of action which I began in early July. I am back on the chemo (Valcade). I have responded well to this medication in the past and look forward to similar results but the cancer possibly has grown to a more aggressive mutated form so any results are very day by day. I was classified as “critical”, meaning few options available. The good news is that there are options. I’ll be on this routine for a couple of months, 21 day cycle; chemo day 1, 4, 8, 11, and 10 days off. Second cycle starts tomorrow. Any we will see where this takes us. Not jumping to far ahead.

Also, I had two vertebrae, causing a good amount of pain, that had cracked or on there way to collapsing. They fixed in the same surgical procedure that was used when my L-1 collapsed in March of last year.

I want to thank all of you for your concerns about my condition and after more research, I want you all to know that I remain firm in my belief that my medical team is the right one for me, hand picked by lots and lots of praying.

If you pray, please pray for me to have strength, fighting the fatigue and better mental health. God is good. He never promised life without strife but he did say he would always be there…and He has for me, still now every moment.

“God did not give you a spirit of fear, but a Spirit of power, love and sound mind.” 2 Timothy 1:7

I am not fearful…. But I sure could use MORE of a sound mind! I thank God for the work he is doing through me, and for me. I love all my friends and family. My kids have been here all the way, AJ is amazing, and other family and friends I could not be here without all you prayers, well wishes and love. <3, T.

Long time....

Greetings all. It has been a long time since I have written, but I have a good excuse...I have been really sick and quite frankly haven't had the energy or the spirit to write. But I am now on the mend!

In short here is whats been going on since I last wrote. My rash did finally test positive for GVHD. Which isn't a bad thing because now it is clear. However, I am still on steroids which really does wreck your body. The steroids are different from the ones athletes take, don't as me how...I just know they are different...the worse thing I have experienced is the deterioration of muscle mass. The doctors did tell me this would happen, but I didn't really realize what it was...until now that I can't walk up stairs, unable to really get up from chairs etc...my calf and legs muscles are shot! Good news...it does come back with time and work. I have to walk, do stairs etc to get it back, but it is coming. It is just so weird to think you are going to stand up or walk up a 5 inch step and your body can't do it.

So after GVHD rash, about 4 weeks ago, I got a stomach/intestinal virus of some sort. It just came upon me and because I have nothing to fight with it just took over. I haven't gone back into the hospital but I have been coming to the clinic daily for fluids and meds. I also contracted an additional virus, para influenza #3 (can turn into phenomena), which just put me under. All you can do for a virus is ride it out. So that is what I have been doing for the last 3 1/2 weeks...riding all of this out, many days using a wheel chair to get to the clinic because I just had no strength, plus I have lost a total of 16 pounds since the transplant in March. I am hoping to get at least 10 of those back! I never thought I would ever say that. But TODAY, I am stronger...walking in to the clinic on my own and maybe next week I can start driving again. I am so thankful that GVHD did not land in my colon. it certainly was a concern during all of this intestinal stuff but the test proved otherwise! Thank you God.

I love my clinic, The Bone Marrow Transplant Center! ~Best decision ever. Dr. LesMaistre is amazing, but his staff is more so. It is like a small community. There is no rushing, no shuttling...they focus on you and your needs. They really do "treat" the patient not just the cancer.

I decided that I will probably write monthly because there really isn't much going on now. So don't be alarmed...also feel free to email me or you can always call AJ if you feel to much out of the loop. I want you all to know that I have read your emails, texts, cards, and listen to you phone messages. I haven't responded because I just have been so tired and I appreciate that you all understand "if Terry doesn't feel good...she doesn't talk!"

I am so fortunate to have such a strong support base, I really thank you all for you prayers and healing thoughts, they are working! As you all know, I love bible scripture. My friend and prayer warrior, Lola, sent this to me. It says much!

I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Christ who gives me strength. Philippians 4:11-13

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!

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 14^th 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.