Finally, A Wanted Answer to My Many Prayers

Today we had our meeting with Dr. Carroll to find out whether last week's marrow biopsy yielded remission or not.  We went in without any expectations, given that the last time we had this kind of consultation we had a very unexpected blow to the ego and spirits.

Before meeting with the doctor, the Financial Coordinator (Raj) came out to go over what Tom's medical benefits cover as far as medications and the transplant are concerned.  During our meeting with her I was listening rather attentively and it didn't particularly cross my mind as to why we were discussing it, but once she left I thought, Wait, I wonder if Tom is in remission and that's why we're talking about coverage for transplantation! Then I shut my thoughts down so as not to over excite myself and then be punched in the gut with bad news.  The time in that room could not possibly go by fast enough.

We had to wait for Tom's labs to come back before Doctor Carroll would see us.  Why is he putting us through so much torture!!!! Tell us already!!!! My mind was racing with thoughts and also aching from lack of sleep last night due to the anxiety attached to this meeting.  Suddenly I was getting very anxious and thinking about ways to stay calm if it was bad news.  This in turn made my stomach sour.  Hunched over with a headache and upset stomach I could only just urge the doctor in with my thoughts.

Finally, he came in and he sat down.  What does this meeeeeeeean?!?!?!  I tried desperately to read his face, his body language, anything.  "So, I hear you're not feeling well?"  OH COME ON!!!!!! Tell us already!!!! Tom tells him he thinks it's one of the meds that he's on, etc.  Cut the chit-chat.  Then he says it... "The biopsy shows that you're in remission."

Come again? "Our pathologist had a thorough look and found nothing suspicious, which is not what your previous biopsy was like.  We got a great sample!"  Now, I had coached myself on what I would respond with for bad news... what do I do? I end up having to fight back tears! Tears of joy of course, but this was way more overwhelming than I'd anticipated!  Out of my mouth comes, "Yay!!!"  Frantically tapping Tom's arm, "Do you hear that?!"  Then I look at the doctor and say, "We weren't thinking positively at all!!! After last time, we didn't want to get too excited."  That sounded awful. He continued to reassure us and talk to Tom about the biopsy and it was just all so damn exciting!

He said he is nervous about this remission however and so we need to maintain it with some more chemo until we have a donor set up.  He hadn't heard any news on Alex's marrow typing test yet, we assured him it was done last week to which he said we should then have the results hopefully this week!  Whether Alex is a match or not though, it can take nearly a month to get things sorted and be ready for transplant, so he still needs to do some maintenance chemo.

Tom's mom arrives from England on Wednesday, so Tom asked if he could go in on Thursday so that he could accompany me to San Francisco to pick up his mom.  I assured the doctor that if this would in any way impact Tom's status of remission, it was not necessary.  Surprisingly, Dr. Carroll came back and said, "Let's do Monday. Spend the weekend with your Mom."  YES!!!!! 

The best part is, this chemo is only for 4-5 days of hospitalization.... so long as Tom doesn't get any kind of fever/secondary infection while in.... He'll be home for Christmas!!!! Miserable, I'm sure, but home nonetheless!  Because he'll be coming home right after the chemo, it means his counts will crash while at home, which leaves him tired and vulnerable to outside infections. He was really wanting to be home for Christmas, but we were afraid that him being home would mean him not being in remission... but we get to have our cake and eat it too on this one! I'm so thrilled!

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To say that on the way to the hospital I was highly considering taking up smoking upon our return home today (in anticipation of really awful news).... I must say that I am feeling especially relieved.  I have also not picked up smoking, instead I've picked up a rather silly grin and large amount of relief. Merry Early Christmas to me!

Trying to Ease the Anxiety of Impending Doom

The social worker suggested that it would be a good idea for us to get out of the house and go somewhere this week. She thought it would serve well as a means to keep Tom's mind off of the pending biopsy results. We chose to visit friends and family in Santa Cruz.

I don't know if it's because Monday is nearing and that I'm bound to be thinking of it, or if it's the fact that I'm here to not think about it that's causing me to think about it; But last night when I went to bed, all I could think about is how horrible I'm going to feel and how earth shattering its going to be if this biopsy doesn't have a negative leukemia read.  So I start thinking about this and reliving the moment of the last biopsy results and my collapse and how horrible it was, and then I think, "My God, Tom's anxiety must be a MILLION times worse!"


Surely being away IS a good idea, visiting with so many folks must at least be keeping our minds off of it to a certain extent, but when left to my own devices, I'm afraid I'm my worst enemy.  A few nights ago I couldn't sleep at all and I found myself praying past the usual amount, hoping it would subdue me into sleep... Instead, I ended up bawling my eyes out, begging God to have mercy on my husband and to let us grow old together healthily. Believe it or not, that actually helped me fall asleep! It was such an awful feeling though. I'm getting so anxious and overwhelmed about these results, perhaps not building up false hope will ease the blow if it's not what we want... I'm not sure.

Our Justified Sense of Denial

When he's at home and feeling good, it's so easy to forget that he has this very serious disease.  Obviously, things are very real and serious when he's hospitalized, but when he's home and feeling good, it really is easy to sometimes forget. Maybe the more correct word is ignore. We've both said it and maybe that's what makes it so easy, is that we both get into this easy going routine of normality, especially when we have a few days off from doctor visits.

I don't know if it's a good thing or a bad thing. I mean, it isn't really denial is it? I know that he has leukemia, I know that he has to get a bone marrow transplant, and I know that he is still susceptible to terrible infections and that he will have some rough patches ahead; BUT when he's home and feeling good, I think it's important that we both get a break from the stressful moments of reality and we both get a chance to feel happy and unburdened temporarily. Yeah, that's my justification.  We shouldn't have to be constantly reminded of what a crap situation this is... Because it isn't all terrible.

For one, we are so lucky that I am able to have this time off and when he's feeling good, God is it wonderful to spend time with my husband. Likewise, when he feels his worst, it's so wonderful that I can be there for him... Even if there isn't much I can do, at least I'm not at work somewhere worrying and feeling completely worthless.


In other news, brother two was finally able to get his typing test done to see if he's a marrow match.  Today Tom is having a bond marrow biopsy to see if he's in remission or not, so fingers and toes crossed.  God we really need this to come back with him in remission, quite seriously.

Anyhow, that's all she wrote.