Thursday, October 16, 2008

Cause for Concern

I haven't posted Ann's labs in a while and I wish I had better ones to post.

WBC 13.7 K/uL (4.4 - 11.0)
ANC 11.15 K/uL (1.7 - 7.30)
PLT 203 K/uL (140 - 400)
RBC 3.34 M/uL (3.5 - 4.4)
HBG 10.9 G/dL (13 - 15)

The problem is pretty clear isn't it? Because Ann's neutrophil count is too high, she is now in a state called "neutrophilia". Considering that neutrophils are the potion of the white blood cell population that defends the body against bacteria and fungi, you would expect that Ann would show some symptoms of being infected with either of those. Namely a fever, a cough or something like that. However, her temperature has remained nailed in the 98's (F) with only minor variations, and she has had no real coughs or respiratory problems to speak of.

So whats gong on? Could this be a relapse? After all this is starting to paint a similar picture to what Ann's counts were before we had to come back to MDA. However, Ann's chimerism tests (performed on 10/6) did come back today and the result is that 100% of her T-cells and 100% of her meylod cells are from her donor. Also the bone marrow biopsy results from a week ago reported that the pathology, PCR and FISH tests were all negative for leukemia. However, our doctor will admit when pushed that these results don't necessarily mean that a early relapse is impossible...just that its unlikely.

Rather than focus on the worst I have formed a working theory, which I'm going to hope is right in this case. Since the conditioning regime Ann has had a "inside-out" sunburn. Where the innermost layers of skin suffered damage from the chemo and the dark patches have become more apparent as the upper layers of skin are worn off. This is essentially a chemical burn, and Ann says it itches as it begins to peel. Neutrophils can be stimulated by tissue necrosis, like damaged cells from chemo or burns. In addition Ann just recently stopped taking oral cellcept (immune suppressant) this Saturday.

When Ann relapsed last time it was in the presence of not just an elevated neutrophil count, but a constant and chronic low grade fever as well, which she doesn’t have this time. Her blood work also shows a high percentage of monocytes (the body's clean up crew). So I'm theorizing that the elevated neutrophil count is a response to the chemo burns and dead tissue left behind from the transplant, and is appearing now that some of the immune suppression has been discontinued.

Sounds good...and I hope I'm right. I didn’t get to ask Dr. Kebriaei about this (formulated it after clinic), but when I did ask her what was causing the neutrophilia she basically said she didn’t know. She did however, point out that we have "lots to worry about and we should enjoy our time while we have it". Needless to say that felt like a giant bucket of cold water being dumped on both of us.

Neither of us said much on the walk out of MDA, as we both felt shell shocked and demoralized. When we got in the car I made an obligatory phone cail to family to let them know what was going on. During which my Mom asked Ann what was going on. Then Ann recited what Dr. Kebriaei had told us for the first time out-loud, and tears began to well in her eyes. I stopped the car and held her as tightly as I dared without damaging her central catheter.

"That hurt saying out loud" she choked into my shoulder.
"I know. I'm sorry."
"We've just fought so hard...I don't want to die!"
"We aren't giving up...ever", I said.
Then I kissed her, and tried to let her know how completely I love her.

19 comments:

Nancy said...

I'm sorry. I don't think your doc should have said that. Is this the first time her "bedside manner" has been lacking? I definitely vote for your theory that the neutrophils are elevated because of the tissue necrosis. I guess we're in a "wait and see" stage. So, think positive! Our thoughts and prayers are with you. love, n

Anonymous said...

I'm sorry.....that is a horrible thing to hear, let alone say out loud. Your theory sounds plausible to me as well. I'm not sure what to say....just wanted to send support. Hang in there, there are a lot of people pulling for you both.

Susan C said...

Good grief! I can't believe the doctor said that to you. Other than the elevated neutrophils, it sounds like there are many, many positive "worry-free" things going on - from the 100% donor to the clean tests to the normal platelets and red blood.

I'm trusting that Chris's theory is 100% correct.

PJ said...

Please call the doctor tomorrow and talk about what you've said here. You deserve to know exactly what she's thinking, although she might not have any real answers for you since Ann is in unchartered territory. If she thought Ann were relapsing, I think she'd pull her off the immune suppressants. Hang tight and try not to think worst case scenario.

xo

Michelle said...

I agree with Susan, I'm happy to see all of the other great counts. I think the working theory makes a lot of sense and I'm eager to see what your doctor says about it. Sometimes it takes someone to think outside the box. You two are the strongest couple I know. Hang in there. You are always in my thoughts.

Anonymous said...

hello

today's post is really cause for concern. how i wish that you shouldn't have to get through all this.

be strong ann. i'll continue praying for your well being

nora

Anonymous said...

First, I am sorry that the two of you even need to hear anything like that in the first place.

Second, I am not a doctor but at 10 months post transplant- a slight drug change (and Ann has had MAJOR ones) make my WBC and ANC hit the roof and off the charts.

Pulling for you guys. You have every right to be real and thanks for sharing that with us. But PLEASE try to keep that "could be" comment in check. Yeah, it could be a lot of things- like an infection too.

Anyways, I know this is harder the second time around since you have "been through" this nightmare before. I know the docs mean well, but we hang on EVERYTHING they say and don't say.
Lea

Jim said...

I agree with PJ. Tell the doc your concerns and questions.

Also, Dori had one doc whose bedside manner was not the best, but we hung with him and we're glad we did. He's a good man. Hang tough, and we so admire the love you share.

Jim

Melinda said...

Lovely bedside manner! Definitely deserves a discussion. Ann certainly has a lot of great tests going for her, and your theory sounds plausible.

A doctor's words carry great power and they need to learn to use them wisely. She's telling you to enjoy life while you worry about everything?

Oy, I got rid of an onc who repeatedly frightened the crap out of me. We need hope and encouragement, not fear-mongering.

Light, Love and HEALTH!

Melinda (Miranda from LLS board)

Judy said...

Guys, your doc needs a lesson in civility. Just a few words can cause a panic. I've seen doctors who seem to major in this area. Look, if the cellcept was discontinued, then the immunosuppression is going to change and the white cells are going to start rising. They may shoot up and then level out.Chris, it seems HIGHLY unlikely that this is a relapse.With her chimerism tests being so good? If you can stay in the moment, it would be easier on you but I am a big talker and don't walk the walk...However, your doctor didn't have an answer so she just threw something out. I would really confront her, or him. This is not good medicine. Try not to read too much into those words. Ann has been doing so well. Besides, with a burn like she has, wouldn't her body feel the need to fight off such an assault? It may not cause a fever but it certainly wreaks havoc to have such burning and peeling. My love and prayers, Judy

Ami said...

You guys don't know me, but I've followed your blog for awhile now. My husband was also cared for at MDA, however, he passed away in Aug but it was due to a fungal infection in his lungs.

Ann, you are in inspiration. When we found out my husband needed a transplant we viewed your blog daily and you were such a hero to us (and still are).

We saw both Dr. Kebriaei and Dr. Thomas. I can honestly tell you the bed side manner of every dr we encountered at MDA could use some improvement.
Don't let what she said get you down. Like everyone else has said, everything is going your way so far. Stay positive!

Marie said...

Take what the doc said with a grain of salt. Truth is we should all enjoy whatever time we have--be it 6 months or 60 years.

Back in early January, we were told to expect 6 months with our daughter. Today she is still fighting, but thanks to some really smart surgeons here in Utah and some really smart folks at MDA, she's working part time and looking great.

Hang in there.

Anonymous said...

Praying for you, Ann.
-Jeannette Hill

Tina said...

XOXOXOXOXO to both of you. I wish i was there in person to give you big hugs.

Anonymous said...

Hi Ann & Chris:

While we do hold physicians to a higher standard, the truth is they're just people. Perhaps it was a "bad day in the office". Either way, if "I" were a doctor I would VALUE a patient like you, Ann, and would show extra care and courtesy when speaking. I'm really sorry you had to hear that. But know that just because a doctor said it, doesn't make it true. I think sometimes it's hard for a doctor to leave something at: I just don't know.

While that doesn't excuse what took place, I have every confidence that you and Chris will grow old together and have many, many more YEARS with that special brand of love that you have. I'd bet the farm on it!!

Wendy

Ronni Gordon said...

I agree with everyone that the doctor should be given a talking-to. Do you have a social worker with whom you could air your concerns? This is the kind of statement that most doctors might give, and, presented with more thoughtfulness, might come out like this: "We have lots to work on. Let's take it one day at a time." Which is probably what the doctor meant to say anyway. Another thought: I share your anxiety at labs that mimic the labs you had when you were diagnosed or relapsed. Something like that is happening to me now. But I think we need to try to remember that since we are not doctors, we don't know all the other, and more benign factors, that could be at work. It could be Chris' theory or it could be any other number of OK things we don't even know about.

Rajesh Mani said...

Do lot of breathing exercises.. Try some Yoga... Thiese things do help... Expecially the Breathing...
Rajesh

Anonymous said...

Dear Ann and Chris,

We don't know each other but I "stumbled" upon Ann's blog through the Advocate sometime ago. I moved from B.R. to Canada upon marrying a Chinese Canadian.

Just know that I am helping you carry this burden by praying for the both of you now. God is not the God of yesterday, tomorrow, or the future but the God of now. The Great I AM. Worry is such an ugly word where no peace or joy is found. Don't go to that place. Don't take the worry detour regardless of what doctors tell you. The love that both of you share is truly an inspiration - That love is a heavenly gift where peace flows of abundance. It will take you through the fight.

Don't ever ever give up...

PriestessT said...

Chris and Ann--

It took me a while just to resond because your story is so shocking. I like to think that all our intentions are good while our executions as mere humans is often lacking.

Yoou should talk to your doctor about her comments and the impact they made on you. No one fighting the fight needs that kind of extra shot. But also, try to forgive nd take what you can from the incident. Ann is here today and we must live every minute of our time here. And remember that the forgiveness is for you - not the doctor. It allows you to continue to live in love and light.

With positive thoughts and prayers.
Tammy