Wednesday, February 18, 2009

Hard to Believe

Nervous. Meeting with Barlogie today. Last week we were told my response to the chemo, based on IGG levels, was not great. Already met one of the transplant nurses who told me that I would definitely get sick from the side effects of the high dose chemo used in transplant. Barlogie walks in, warmly hugging Susan and shaking my hand. Sits at the computer and begins a review of the data. Oh, so much data. I glance over. He is reviewing a bar chart of the IGGs. Not a great drop. I had so much trouble accepting what we were told in January before I started the first round of chemo that I never blogged this info: My cancer levels, i.e., the degree of cancerous plasma cells in my bone marrow had jumped to 90%, from 10% to 15% in November. I was so frustrated that delays in scheduling my trips here and treatment left me untreated for almost 2 1/2 months and the myeloma seemed to be out of control. Barlogie speaks. "This is hard to believe." I look at Susan, she at me. Oh shit, now what. "Hmmmm," he says. Then, "your bone marrow shows your cancerous plasma cells have dropped to 5 %." "This is hard to believe."

He starts flipping through the paper file in front of him, which is now about 6 inches thick. I'm sure he will find a way to take back my rising spirits. "No," he says. "Dan, look at this." He shows me a graph of spicules from the bone marrow biopsy in January and compares it to the biopsy of last week. The difference is obvious. "This is excellent." "This is proof." Then, he sits back, puts his finger to his lips, "what to do, what to do", flipping through more of my data. He lurches forward, pulls out an order sheet and begins to write. "I think we'll do another round of chemo, this time for 14 days, and some new drugs, along with some of the same ones." I point at him and say, "I'm no doctor, but I agree. My intuition told me this is what would be best for me." This was one of the many questions I had written down to ask me---why not another round of chemo. He reviews the drugs with me. I ask, "and then are we looking at a transplant." He responds, "I'm not sure. We'll have to see how you respond to this next round." We have moved from the presumption of a tandem transplant to perhaps no transplant!

Relief does not describe the massive weight that has lifted from Susan's and my shoulders. We know this is not the end of this disease, this process, or my treatment. But we so desperately want some up days to keep us going. Last week was such a low point, with the doctor (not Barlogie), telling us I was now in the high risk category (Barlogie says definitely not) and that I would most probably be going right into transplant and would be given one of the harsher high dose chemo regimes. One that I had unerstood was used mostly with high risk people. I asked Barlogie about that regime. He said definitely not for me at this time.

Another day in the life of a person dealing with this nastiness. Today, not so bad. I never thought I would have that response to a prescription of 14 days of constant (yes round the clock) chemo, but that is how I feel right now.

Last weekend we drove to Tyler, Texas to visit my brother Mike and his wife Penny. We had the greatest time. First just getting out of the treatment mindset was so refreshing (30 days of mostly 2 visits a day to the clinic/hospital). And being able to do it in the comfort of their beautiful home, with family. They took such good care of us with meals, manicures (no, not for me), and idle conversation. We came back refreshed. Thank you Mike and Penny.

Catherine will be joining us this weekend. We are so excited. More so knowing that I won't be in the transplant unit of the hospital. We might even get to go out for dinner (I continue to be the optimist).

And thank you to everyone for your continuing support. As we get battered around you provide us with strength through your love and support. We continue to be so grateful.

Much love,
An insight into my own disbelief at the tremendous response to the chemo: I awoke this morning and thought maybe they had mistakeningly put someone else's bone marrow report in my file. I checked my copy. No it's mine. It is true. Also, stem cell collection is very good in Barlogie's view. With the 16 million I have (10 mil from Denver) we've got enough for 4, maybe 5 transplants. Let's keep them on ice, I say. Despite the runup in the numbers while waiting for treatment, based on other data, Barlogie does not believe my disease is particularly aggressive or angry. And finally, for you true biologists, (yes that would be you Molly) technically speaking the 90% and 5% numbers referenced above are not "cancerous". The tests measure bone marrow cellularity and then the percent of plasma cells within both the bone marrow and the aspirate drawn from the bone marrow. So my celluarity in January was 97% and is now 50%. 50% is about normal. The plasma cells were 90% and are now 5%. That is where the cancer resides--in the plasma cells--we all have plasma cells, mine just produce too much of the IGG antibody. Hence they look at IGG levels as an indicator of the cancer levels. As I've said in earlier posts, the biology of this disease escapes me. I spent way too much time staring at the high school girls in my biology class and not reading the books to be able to understand all this. But, it's all still good.


Big Frank Dickinson said...

Dan the Man,
Yes! Yes! Yes! Very very happy to get this good news.

Love, Tom

Brother Ted said...

Maybe it is the "camo outfits" you and Susan are wearing these days that sent the cancer on it's way. As they say, when in Rome. It is fantastic news. I am sorry that you and Susan had to carry the burden of those high numbers on your own. Next time share the load and the worry. That is what we are all out here to do for you. With love and gratitude. Ted

Pam said...

I've been following your blog and Sonny and I always share your ups and downs. l can't say I know how you feel (other than your stay in Arkansas, which I will say no more about), but we are rooting for you every day.
I am sending whatever strength I have to you and your amazing family to use however you see fit.
This is marvelous and I am cheering so loud I bet you can hear me. Hugs all around. Pam

Joni said...

Danimal!! This is great news! We are all keeping our fingers crossed that there is nothing but more good news on the way. We miss you tons and have all kinds of exciting things going on here in Denver that we can't wait to share with you when you are back home. Give Susan a hug for us!


The LLS Girls

Nick said...

I had the delight of having dinner tonight with Bart and his wife. If there is one person in the world who knows how to beat this disease, it is him. We are both in the right place. Well, except I'm in your old condo here which SUCKS. :)

Seriously, Dan, I'm so happy for such a good day. Between us, the good doctor and his nurse Bonnie both think you're a great guy.

Cheer to your health. One of these days I'll sliip a note under you door, neighbor!

All the best,