Saturday, January 9, 2010

Afraid of What I Don't Know

"I'm worried about your scan results," said my oncologist's voice on the other end of my office line. Those were literally the first words out of his mouth - very uncharacteristic.

Like I got a hearty punch in the gut I may have stopped breathing for a minute - or two. Things blurred in front of me and my mouth felt as if it were stuffed with cotton balls.

But me being me, I responded: "Really? What do you mean?" in my cheery voice.

He told me to come in and that I should bring Craig and my mom if I could. Before we hung up the phone he asked me if I was going to be okay - told me that I sounded very calm. He asked if I wanted him to write me a script - some Ativan, perhaps? Me? No. Half a box of red wine will do.

I had had my fourth PET-CT Scan two days earlier. We all had every hope that this scan would be the affirmative that all was clear. It would be the final sign-off and I could schedule an appointment to get my port removed from my chest. Apparently, no such luck.

Going in for a scan is incredibly unnerving. I was very anxious, apprehensive, nervous - all those emotions that keep you from sleeping and kick around your stomach like it's a soccer ball. There was a lot riding on this one and I'm disappointed to say that the outcome wasn't what I had been hoping so desperately for. To avoid any false positives I was careful not to do any physical activity the day before my scan, I went to bed early and I drank every last drop of that horrific milky/chalky barium sulfate. Despite all of these efforts, I can't say I am entirely surprised that
my scan wasn't clear as I had been experiencing that heaviness and fullness in my chest for several weeks and had that gut feeling that something wasn't right - as much as I tried to grin and bear it through the holidays. What I didn't expect was how much suspicious activity would show up. Right now I'm feeling defeated and anxious beyond words.

There are what are called "hot spots" growing on my sternum, in my mediastinum, behind my abdomen and in my left pelvic bone, as well as some warmth in my spleen. "Son of a bitch" I thought cursing the results as Dr. Dailey carefully and thoughtfully explained this to my mother and me at a follow-up on Thursday. Just because there is hot spotting does not mean that it's cancer activity, but I quote, "There is a fairly high chance that something is brewing." That's not an easy sentence to swallow.

PET-scans are very finicky and are notorious for rendering false positive results. Hot spots reveal anywhere where there is increased metabolic activity taking place in the body. Cancer activity shows up this way, but so does inflammation or scarring action that may be a result of my body still playing clean up after everything it's been through ... though my doctor says that should have already happened.

Because my cancer was so widespread at diagnosis with a 4b staging, the chance of recurrence is higher than those with lower stages of Hodgkin's disease. There is a chance that even if the ABVD chemo regimen killed 99% of the cancer cells, that 1% could have been resistant to it and are now replicating and spreading like little rogue bastards. I'd been told all along that if I were to have a relapse it'd most likely happen in the first two years of remission. Two months after finishing treatment? No, I did not expect this.

But again, we don't know anything for certain and won't until the cells in these suspicious areas are examined. So, on Wednesday, I'm headed in for a ct-scan-guided fine needle biopsy of the area in my left pelvic bone that is hot spotting on the scan. My life as I know it is riding on the results.

If it comes back negative - great news - but, we still won't know for sure if this area was just a false positive while the enflamed lymph nodes in my chest or the activity in my spleen might be signs of another malignancy. So unless the negative result shows some very definitive answer as to something else completely unrelated to cancer going on in my body, then we'll have to continue to watch this closely and I'll likely have to go in for more biopsies of the other areas in question. Slice and dice we will ... .

If in fact the ABVD didn't kill everything and the results show that the Reed Sternberg cells are back - a tell-tale sign that the Hodgkin's disease is again on the attack, then there's a long road ahead. We talked a lot about what the next steps would be if I am in fact having an "early recurrence" as Dr. Dailey phrased it. To be blunt, the thought of it all scares me shitless. It'll involve much high-dose chemotherapy, hospital stays, and an analogous stem cell transplant which will in effect wipe out my entire bone marrow, force me to produce new cells, harvest and freeze them, then re-implant them for my body to start fresh without any abnormal cancer cells lurking. To get the procedure needed I'd have to go to Yale New Haven or Dana Farber hospital and would have to spend a lot of time there ... . But even if I have to go through it, I'm told that my chances of being cured are still very high - a 35-60% chance to be completely cured. In preparation I've been told to get my rest, eat right, no strenuous exercise - to keep my focus on getting/staying strong.

But right now that's neither here nor there. We were just laying all the options on the table. I am now doing my very best not to create scenarios in my head, not to focus on the unknown, not to drive myself crazy. I have no doubt that this week will be one of the longest in my life as I await my fate. I have so many questions, so many fears, so, so, so much anxiety and am working my hardest to keep it all from overtaking me.

As Dora in Finding Nemo says: "Just keep swimming ... Just keep swimming ... ."


  1. Karin,
    You never stop amazing us. Keep on thinking the way you've been thinking, you've got a good head on your shoulders. Just know this....the procedure that you describe at Dana Farber is very similar to one that a 5 year old friend of ours just went thru. The 3 of us have been wearing his rubber bracelet for the last year that says "Blake's cure". Two weeks ago we received awesome news. Blake had a different cancer, but he was stage 4b with a 30% chance of survival. Nick summed it us best....he got a Sharpie out and wrote and "D" on his bracelet. "Blake cured".
    We love you.

  2. just simply, you are in our thoughts. we can't imagine. xo. we are constantly thinking of you.

  3. I believe I know of the little Blake from Torrington---they have come sooo far and this may be what you need to knock it out once and for all---positive thoughts coming your way and keep up the good work---We are thinking of you every minute xoxoBev & Blake

  4. Found your blog through a Google news alert... I'm a 30 year old diagnosed with Hodgkin's in May 2008. I did ABVD and radiation, which totally got rid of everything. Six months later the lymphoma was back. I just finished an autologous stem cell transplant and am in remission again.

    You have a long road ahead of you, girl. You can't control the situation, but you can control your attitude. That's about the only advice I've got. The whole thing just sucks, sucks, sucks. If you ever have any questions or just need to vent, please shoot me an email:
    my blog:

    Hang in there.


  5. Dear Karin,
    My name is Jean and I’m a volunteer with the National Bone Marrow Transplant Link. Our organization helps patients, caregivers, and families cope with the social and emotional challenges of transplant from diagnosis through survivorship by providing vital information and personalized support services. We subscribe to Google blog alerts, where we found your story.
    Please know that others are thinking of you and pulling for you! To learn more about our programs and services,including peer support on call, please visit or call 800-546-5268.
    All the best!