Sunday, July 11, 2010

What Do You Want From Me?

I had nothing but a big bowl of anxiety the morning I was to go in for all the tests. I wasn't allowed any food because of the scan, but I don't think I would have been able to eat anyway. The drill was routine enough: injected with the dye and left to drink the milky, chalky barium sulfate in a dark room for an hour with no stimulation allowed. Once in the PET Scan machine I fell asleep to its whir under the color changing lights installed in the ceiling that remind me of the back of a limo. Blood work followed then it was upstairs for a breathing treatment and to see my oncologist.

He and his nurse spotted Craig and me in the waiting area and called us right back to the exam room. He joked about how we blew him off for a vacation (I was supposed to have my scan July 1, five days earlier) and then said he had heard from Dr. Dailey that I hadn't been feeling well.

I told him that no, I hadn't been, and the conversation continued into the exam room. As we spoke, his nurse Erin pulled my PET Scan pictures up. We were all seeing it for the first time.

"Well, it looks like it's back," said Dr. Cooper. Craig witnessed Erin do a double take and a little jump, so taken aback by what she was seeing.

Dr. Cooper palpated the lymph nodes I had been concerned about and they were in fact the exact places lighting up on the scan. The four of us then huddled around the flat computer screen marveling at my 3-D body head to toe marred by these black globules filling my chest, my left underarm, my neck and collarbone area. Some starting in my abdomen and pelvic bone.

"How is that possible?" I asked, deadpan. At this point we were looking at the PET Scan I had after ICE which was completely clear save for one questionable area in my chest lined up next to this one with so much activity.

Noticing that I was a little woozy, Dr. Cooper invited me to sit down as we talked further.

"I'm positive it's malignant," he said. He explained that it's most likely the Hodgkins back again, but that there is a chance it morphed into Non-Hodgkins or another type of lymphoma. He explained that it's "highly unusual" to see a relapse this fast especially after the highly aggressive treatment that I just came out of. "Whatever this is, it's pissed off," said Cooper.

From this point on I only heard words. No coherent sentences, just words. All I could think about was how small his pupils were as I stared at them through his rimless glasses. He went on about treatment options, why I may have relapsed, allogeneic stem cell transplants, stem cell donors, DNA testing, smart missiles, Ebstein Barr Virus, b-cell lymphoma ... . It was Charlie Brown's parents on the other line of the phone again: "Wah, Wah Waaaaah, Wah, Waaaaaah."

Craig diligently took notes and paid full attention so I was able to let myself go even further. I stared at Dr. Cooper's khaki's and his blue office shirt and wondered why he never wears a white coat. Then I pictured his closet full of boat shoes and khakis and only light blue colored shirts - striped, checked, plain. It's all I've ever seen him in. Kind of like a cartoon character.

I'd float in and out of the conversation. My tears would well in my eyes and then subside. The lump in my throat continually jumped. I was not surprised at the news, though I was deeply, deeply disappointed with it. I know my body very well and I knew that the cancer was back as much as I tried to will it and visualize it otherwise. That is why I pushed to go away on vacation together so last minute. I knew deep down that this scan would reveal a whole new adventure to come, but this knowledge did not make receiving the news one iota easier.

They decided to bring in the pathology team right then and there to try and get some tissue samples from my external lymph nodes through a fine needle biopsy. This would help us to better know what we were working with and be able to better formulate a plan.

A doctor, resident and intern come in and I mustered all my strength to not burst out crying. I had hot tears rolling down my cheeks for the few moments that Craig and I were alone in that dreaded room. He looked ashen and his eyes instantly grew dark bags below them.

With no numbing medication whatsoever, the doctor came at me with a "fine needle" which he jabbed into the lymph node on my collar bone and then moved up-and-down, up-and-down, sucking up tissue into a syringe gun. It felt like it sounds. I just stared at the wall and gripped the soggy tissue in my hand.

They'd leave the room to go look at the sample under a microscope then come back and say: "no diagnostic material to work with." This happened twice in my neck. Then they went for the node in my underarm – again, twice to no avail and they decided to stop and instead schedule a surgical biopsy. More slicing and dicing.

After my breathing treatment and more blood work which kept us there until nearly 5:30pm, we were finally released. As soon as I got to the parking garage I lost it and cried and cried as we sped along the highway. I felt so angry and so sad all at once. I kept kicking and smashing an empty Poland Spring bottle at my feet and choking and yelling.

I felt so awful and so faint that all I wanted was McDonald's ... something I haven't eaten since I felt so awful after my bone marrow biopsy last year. Craig pulled off the highway and I indulged in French fries, two "cheeseburgers," and a mocha Frappe. The grease and immediacy of it made me feel better. Though my stomach didn't feel so hot that night.

I called my parents who came to our house and the four of us sat in the sweltering heat of our living room under the ceiling fan as we recounted what happened. We were all crying on and off and all glowed from sweat and anger. We asked a lot of unanswerable questions and tried to wrap our brains about what was coming next.

Here is what I currently understand:
The very likely path we are embarking on is toward an allogeneic stem cell transplant. This means that I will this time get the stem cells of a donor to create an entirely new immune system since my own stem cells still couldn't combat this disease. The ideal donor will be my brother or sister. Both are being tested to see if their DNA is a close enough match. If not, then the national bone marrow/stem cell donor registry will be searched, which contains over 7 million people. The hope is that one can give me the stem cells that will save me. The allogeneic transplant is much more risky than the autologous transplants I have already gone through because there is the life threatening risk of graft vs. host disease and that this new immune system could recognize my own body as foreign and eat me alive. I'll be in the hospital for at least a month with major precautions and will be watched very closely during the most crucial first 100 days.

Prior to that whole process, I need to get into remission and we need to stop the spread of the cancer now inside me. To get there, I will have the lymph node in my left underarm biopsied tomorrow by the same surgeon who biopsied that same area in May 2009.

We'll get results on Wednesday, and I am on the schedule to start chemo on Thursday. I don't know what kind of chemo or what the regimen schedule will be yet ... that will depend on the biopsy results but a couple different cocktails have been tossed around, each which include drugs that I, and more importantly, this Hodgkins has not seen before.

We're consulting with oncologists at Sloan Kettering in NYC and Dana Farber in Boston, in addition to the expertise and collaboration of Hartford and Yale with the hope of getting a good, solid consensus and making sure that I'm on the absolute best track to get rid of this thing forever. I am no longer an easy Hodgkin's case. I am now an anomaly defying all the odds–something I did not and do not want to be. I have had Adam Lambert's "What Do You Want From Me?" stuck in my head for days just not understanding why this is happening to me.

However, there are still options and my doctors and I are hopeful that there is still a good chance for long-term remission. I am scared as hell, but equally as determined to ensure that that happens. I will endure whatever I have to to keep on living. There's no way that this aggressive cancer can be any more pissed off and determined than I am.

16 comments:

  1. KARIN,

    You inspire me! You are one strong woman....Wow!


    When it is dark enough, you can see the stars.
    Persian Proverb

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  2. You go girl - KICK its ASS!!! You are strong and determined...I can hear it in your writing.

    Keep fighting!!

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  3. Hi Karin, you don't know me but I am an old family friend of Craig's. I stumbled upon the link to your blog awhile back and I've been following it for awhile. Just wanted to finally say hi and tell you I'm rooting for you and thinking of you often, and you are a true *inspiration* to countless people....many of whom you have no idea are even out there!!! Keep up the fight, you are amazingly powerful. :-)

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  4. just remember you have your army of "soldiers" ready to help you in this battle, you are an inspirational leader.

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  5. Listen, read, listen, read - my dear girl-
    "Where can I place my fear - so it will not interfere!!!
    Where can I get my strength?,
    Where can I can I find my peace and calm within
    To find it and hold it - steady within,
    Calm my quaking fear"

    Rid your body of toxins - !!!!!
    In and out of your body
    No shampoos, creams,lip balms, deodorants, toothpaste, mouthwash --- foods!!!
    Give your body a fighting chance - if chemo and cell transplant failed - then baluster your body with alternative means - a combined force of alternative plus traditional can be the force to cure!!!! What's to lose my dear girl, my dear girl. - What's to lose
    -Nobody Loses Fighting Cancer

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  6. We are with you all the way in your fight and know you will win!! We're so sorry that you have to endure more treatment but are confident that this is what you need to beat it finally---love and positive thoughts to you and Craig!!! xoxo Bev & Blake

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  7. Precious girl, We are holding you close in our hearts and prayers as you go through this battle.You will come through this. God bless you dear child and give you the strength you need. You are dearly loved. Irene

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  8. I'm on the donor registry - if you need my little blood makers, I couldn't be more honored to give them.

    I pray for you the strength you need to... To withstand more treatment. To know that this will turn out exactly the way it's supposed to. To accept things that cannot be changed. To understand you may never know WHY this is happening to you. To recieve the love and support that is flooding your way. To keep your smile and positive attitude while understanding that it's okay if it falters because you have people who can be strong for you.

    You are loved.

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  9. we went to middle school and high school together, and I used to be a friend of Eric's when I dated a friend of his way back when...though I don't think you know me, but I have been reading your blog since Jen McDonald sent it out in an e-mail a few months ago.my husband and I pray for you nightly and I put you on my church's prayer roll everytime I get the chance. You are an inspiration to everyone around you and to those who only know you on here..

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  10. Karin,
    I have been reading your blog and keeping you in my thoughts and prayers. I’ve never met anyone as strong and courageous as you. It’s inspiring and I feel lucky to know you. Keep fighting and everyone will keep fighting with you. You are not alone. You are absolutely remarkable and you will not lose this battle.
    Sara Reznick

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  11. Putting the McDonald's cheeseburgers in double quotes struck me as hysterically funny, and then I felt bad for laughing because this sucks. But I know you'll get through it, and you've just inspired me to sign up for the bone marrow donor list.
    We love you!

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  12. Meghan O'ReillyJuly 13, 2010 at 7:56 AM

    Karin,

    Like many of your friends and family, you've inspired me to look into donating bone marrow. For anyone who may be interested, here is a link:

    www.marrow.org/JOIN/Join_Now/join_now.html

    Stay strong - keep fighting the good fight!

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  13. here's the link for the international registry as well. for some crazy logistical reason, only the international registries talk, well, internationally, which may be a benefit for some. it doesn't hurt to be registered in both but this one will cover both within the US and international:

    http://www.crir.org/registerdonor.php

    so many people can be potentially helped by this and it's SUCH an easy process for the donor.

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  14. u inspire me daily... <3

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  15. I donate platelets regularly at Dana Farber in Boston, inspired partly by Karin :-) Anyone who lives in the area and is interested - it's such an easy process and the people there are so unbelievably grateful.

    Stay strong Karin - we're all fighting and praying with you. . .never forget how inspirational you truly are.

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