Wednesday, September 15, 2010

Good News, Bad News

I did not get chemo today. Part of me is rejoicing at having gotten out of it. Another part of me is devastated at the reason why. Another part of me has the omnipresent dread that this means everything is going to happen faster. Again, that cancer world cliche comes up: "Take the good with the bad."

And this time the bad is not so bad and apparently it is not a permanent bad. Craig and I went into the cancer center today with the requisite snack and activity bags packed. I was wearing my sweats and slippers and carrying the lavender prayer shawl that I cozy under while I hold ice in my hands and under my feet. By all accounts we were ready for another chemo infusion. The night before we discussed that it was to be the 38th infusion of chemo in 17 months. That's a lot of rat poison.

Except for my usual anemia, my blood counts looked good. They've just started to ease downward so I certainly passed that test. It'll be later this week that I sink the lowest. However, the results of last week's pulmonary function test halted today's treatment. My transplant specialist at Sloan, Dr. Sauter, had ordered this test to have a look at my lungs and make sure that there weren't any signs of toxicity before pumping me with more GND. The test requires a series of inhales, breath holds, sharp exhales, long exhales, etc., done with a respiratory therapist.

Dr. Dailey informed me that the test portion that measures how well my lungs are able to diffuse oxygen into my bloodstream showed less than favorable results: 51% of predicted. This certainly explains why I am easily winded ... the oxygen can't get to where it's needed efficiently enough. This is obviously disheartening. I miss the other 49%. I was only in the 80th or so percentile when I had this test done pre-autologous transplant in April, showing that the Bleomycin in the ABVD regimen had already taken a toll on my lungs. Most recently, the Gemzar in GND can have the same toxic lung effects. This added insult to injury.

We waited while Dr. Dailey consulted by phone with Dr. Sauter at Sloan about what to do. It was decided to spare me any further damage and to pull the plug on this last infusion. Instead, the transplant date will be sooner. Get out the eraser ... again.

I'm happy about getting things moving I guess, but I'm not happy about this lung damage news. However, I'm told it's not a permanent condition. Once this is all over, my lungs, like everything else that has been damaged, will be able to rebuild. I believe it. I've been impressed over and over at how my body has been able to bounce back. Though I'm discouraged now, I know it's not forever and half capacity is better than no capacity.

So now I'm on the full-speed transplant train. This is actually going to happen. Next Tuesday I'll go back to Sloan for a marathon day of pre-transplant testing. Then, I'll head to the city again on Friday to see the doctor and go over it all. I could be admitted and starting the whole shebang by the week of September 27th. That's 12 days from today. This is pending any new developments of course.

The day has been a mishmash of emotions. I had to take an intense walk with some classic Dave tunes blaring to blow off some anxiety steam. I'm not sure really what I feel right now. Good? Bad? Indifferent? Yes. Yes. And, yes.


  1. Karin,

    We continue to think of, and pray for, you and all of your family. You're wonderful support system and awesome fighting spirit will continue to carry you towards your ultimate cure. Wishing you all the best in the days ahead.

    Frank, Laura Loyot and family

  2. K - It is 3AM, I can't sleep either. I spent part of the night whispering to Jen about how hard this whole thing is. And how no one can understand. I can't really know what you're going through and vice versa. But you're the closest I got to a sister in all of this. I just went through those same sets of tests on Monday as I get ready for my stem cell transplant.

    I know that when the time comes, you will put one foot in front of the other, put on a hesitant smile and walk bravely into the hospital room ready to beat this thing once and for all. At this stage, I don't think there really is 'good' news and 'bad' news anymore- I think it is all just 'news'. Just information for us to process until that day when the really really good news comes in, that we have won. Until that day, keep rolling with the punches, never stop moving your feet, keep your head up and some other lame boxing cliche that I can't think of to end my comment.

    Lots of love.

    -s and j

  3. Hey!!
    caught up to your blog since I had been neglecting reading it while I went through my own SCT. I'm sorry to hear about the fact that you're going in again, this time for allo, but graft vs lymphoma effect should hopefully be good :) u can do this, and im glad you seem to remember it yourself too :)
    Good choice on MSKCC, I went there for my 2nd op too, saw Dr. Moskowitz, I liked him and I'm glad you're being taken care of by an expert crew.
    Good luck with your allo, it'll probably be super shitty but keep your eye on the prize!!
    oh and PS, after I read your blog post about your wig I ordered one for myself too. I wasn't able to pick it up until yesterday because my SCT intervened, but I'm diggin' it :) thanks for the inspiration!

    take care,

  4. Karin - You have such wonderful friends. I like what one of them said: news is just that - news. Things are meant to be and knowing that the bond will come even sooner with your sister is a very good thing. I'll be prayin'and lookin' forward to your remission party this December! Yours in love & harmony. xoxo

  5. Hi Karin - I don't really know you (although you write beautifully so i feel like I've gotten to know you). Anyway, my sister Rebecca now works at Hartford Hospital (in your old dept. i believe) and she told me about your blog - I've been reading it! I am a radiation therapist that worked at Brigham and Woman's Hospital in Boston and then at Memorial Sloan Ketting Cancer center in NYC. You are in great hands and I think you wrote that you will receive total body irradiation at MSKCC so you'll be in my old dept. I'm now in Memphis, TN where my husband works as a Radiation Oncologist at St. Jude Children's Research Hospital. I just wanted to wish you luck and let you know that you have a gift for writing about your cancer travels - good and bad. Your attitude is amazing and it shows in your writing. We'll all be thinking of you. I wish you the best of luck with your next transplant. Love, Karen Ullman (sister of Rebecca Stewart who works with your co workers at Hartford Hospital)

  6. Hi Karin.

    My name is Pegah and I also have Hodgkin's Lymphoma. I just turned 27 on Sept. 9th. I got my official diagnosis July 25, 2009. I would love to get to talk to you because from what I've read we are alike and are going through the same treatment. I've gotten 16 rounds of ABVD, 3 rounds of ICE, and 2 out of 4 rounds of GNR.

    Please send me a message at

    Good Luck!
    Pegah *_*

  7. keeping you close in heart and prayers,as you begin the next part of your journey. Love, Irene