Hodgkin's Journal 39: Don't Waste Your Cancer

Obstacles are put in your way to see if what you want is really worth fighting for....

Yes, so true!!

Forgive the long radio silence. But I encountered a very serious scare last week and I just didn't want to send out the red flag before I knew what I was facing.

The important thing is that tragedy has been averted.

Part I: Last week, Friday, I went to see Doctor T for what I thought would be a closing visit with her before my big move across the Atlantic (now being called "return to the mother ship"). She was supposed to go over my recent CT and PET which were done to create a "baseline" for future check-ups (my first scans since the end of chemo). From my point of view, it was just to close up a few little detail questions about my future care and healing time.

She presented me instead with some scary news. She said that while my PET was negative that my original mediastinal mass (tumor mass inside the chest cavity) had not reduced in size since the end of chemo, i.e. that it showed no signs regression (no effect) from radiation. The total reduction appeared to be about 50%. The original mass was 7x7x10. And now it appeared to be 4.9 x 2.9. She explained that the tumor mass in my chest was too large to consider me "finished with treatment." She said it would be impossible to be sure that there are no remaining cancer cells (despite the clean PET) without an invasive surgical biopsy.

The other shocking news was that she told me my original diagnosis WAS "bulky," a special indication that is used in diagnosing Hodgkins. You get to"bulky" status if your tumor mass reaches 10cm. Something I never thought I had. But apparently, that has always been a factor in my case, unknown to me. Being bulky is considered a complication in curing Hodgkin's. It moves the case from favorable to unfavorable simply because it is difficult to combat tumors of that size.

Feeling my heart sink down into my shoes, I asked her what all of this meant. She said my case had contradictions. On one hand the good PET results twice in a row. And on the other hand, a residual tumor mass much larger than is considered "remission" status. She chose therefore to take my case to her academic board the following week to gather opinions. But finally I said, "what are we talking about here, really?" And that's when she said she felt it was very likely that they'd recommend I go back for more chemo, probably 2 more cycles of ABVD with the goal of reducing the tumor mass further. One week to wait for a decision. Meanwhile, she said I should think about which country I would do the chemo in.

I stumbled out of the office on shaky limbs. I managed to pin down an appointment for the following week. Then I ran through the halls as the tears started to escape from my eyes. I landed in the front seat of my car, fumbling through the keys of my cell phone to call home, ignorant of the fact that it was only 6am on the East Coast.

For the next 24 hours I felt like the world had stopped, again. My fledgling new life was going to be squashed before it ever spread its wings. Suddenly, I didn't have the easy cancer anymore. I had the real cancer. The scary one. The dangerous one. The one that's hard to get rid of. So it's not over?, I asked myself. Will it ever be over?

On the same day I had a phone interview for a job in Philadelphia. I had to block everything else out of my mind and try to act as if I had any right to be applying for a job that required energy, fortitude, and the ability to put in a 40 hour week. That Friday night and Saturday were low low times for me. It wasn't even the prospect of more chemo. I could do that. It wasn't just losing my precious newborn hairs. It wasn't just the delay of my new start. It was the feeling that this beast was stronger than I realized. That the enemy was a real one. That serving my sentence maybe wasn't enough. It was a feeling of renewed vulnerability. The feeling that I'm not a regular person who got cancer once. But maybe just a "cancer patient" period.

No one ever mentioned that there was a possibility of going back to chemo. All I ever heard was that I was making excellent progress. What happened to my airtight prognosis? What happened to my beautiful life?

Part II: Finally, I went back this Thursday to hear the verdict. By this point I'd decided with mom and dad that I would come back to Philly no matter what the outcome. To stay here and feel delayed and trapped would be too much. Emotionally, I felt pretty sure I couldn't do this again without my family.

I guess the news was a mild miracle. Dr T. said she'd spent a busy week consulting experts on my case. Not just the other doctors at the hospital but around the country. She also met with radiology experts who sat with her to measure my scans slide by slide (CT scans take several pictures in sequence as your body travels through the tube). They measured each slide and compared it to my original CT scan at the time of diagnosis. In other words, they measured every angle, every nook and cranny of that tumor mass in my chest. She told me that in doing so, they found much more evidence of reduction than when they measured the mass as a whole. Doing it piece by piece they felt the overall reduction was closer to 75%, not 50%.

While 75% is still not complete, it's in a range that they feel more comfortable with. She said that the recommendation was no more chemo, no more radiation, and no biopsy. At least definitely not now. In 3 months, for my first scheduled follow-up scans, they will be looking to see more reduction as should naturally be the case. If so, great, stay on course. If not, then they want to open me up and take some of the mass out to be sure it is cancer-free. At this point, I'm confident the mass will shrink and everything will go as planned...... and the biopsy won't be necessary. What else can you think?

So.......

Dr T. hugged me (which was a first) and wished me a great new beginning in the USA. I soared out of the office into a warm sunny day. I raced home under blue skies with the windows down and the music loud. I thought, "I could scale a mountain! I could run a marathon! I can drive off into the sunset! I can do ANYTHING I want to do!"

I think it was one of the happiest days I've ever had. To feel free! To feel grateful! To feel the reality, the beauty, the GIFT of being able to make your own choices, fulfill your own destiny. Just to live your own life. It's so simple. And so precious.

I'm trying to promise myself, every day, every bad day, rainy day, boring day----that it could have been different. That it could have been taken away. It's cheesy but it's really true. It is all a gift. And I want to go out there and do it right this time. Whatever I'm up against next I have to remember to keep moving, keep growing, and stay focused on the good. Whatever life brings, I must remind myself, Don't Waste Your Cancer.

Thanks for all of your continued love and support. I know some of you are probably running out of get well cards and E-messages. I hope you won't need any more...

With love,

Jessica