Friday, March 2, 2012

Target Radiation

A very quick and boring treatment update:

I have been off any type of chemotherapy for a month now. Though my last scan looked better, the Vinblastine chemo was not well-tolerated, so I have come off of that seeking something that will be more in sync with my current goals of long-term treatment to keep the cancer forever at bay and me living as long, active and fulfilled of a lifestyle as possible.

After review by all of the brains in the lymphoma service at Sloan-Kettering, it's been decided that the best course of action for me right now is to get rid of the problem spots of disease on my vertebrae and sacrum. It is not safe to let those spots ride; if they grow any larger, there will be no more room for my bone and the vertebrae will give out on itself – a very sobering thought. The spots are each causing significant pain and the one collapse risk involves potential permanent problems and very severe pain or loss of movement. Not acceptable.

So, we're going to go in and zap these areas with very targeted beam radiation. Three spots will be radiated: my right sacrum, T7 and T10 vertebrae. The radiation will melt these areas of disease on and in my bone without effecting the surrounding tissues nor the rest of my body. I am told that there will be no side effects, except maybe a little fatigue. It's nothing like chemotherapy nor anything else that I've been through. However, I've never received radiation in all of my near three years of treatment, so obviously the unknown is a little scary.

Once these problem areas are taken care of, then we will rescan my body and address the other smatterings of disease (of which there was not much at all on my last pictures). The hope is that once these bulky, dangerous areas are gone, we can be a little less aggressive with the chemo and allow my new immune system to hopefully kick in some more, or do some exploring with novel therapies.

All of this will be determined after I complete 10 consecutive days of radiation at Sloan. I'll be on the radiation table for about an hour each time to get each of the three spots (the max amount of spots that can be radiated in a session). I won't have any restrictions otherwise. So, though I'll have to relocate to Manhattan for two weeks, this time I'll actually be able to enjoy the city. I'm making a list of all the things that I want to do while I'm there and not having to wear a mask and gloves and avoid crowds. Bring on the museums and shows! I'm trying to focus less on the few hours a day that will be spent at the hospital.

Last week I had my simulation done during which a mold was cast of my back body and seven pin-size tattoos were permanently inked on my body to ensure accurate placement on the machine for each time I show up to be treated. The tattoos correspond and triangulate with lasers in the room that will keep me placed in the right spot. My newest team of doctors - the radiation oncologists – are now working on the plan of how they will aim the radiation beams themselves to most accurately shoot and destroy the cancer cells while keeping the rest of those delicate spinal areas unharmed.

The start date is still up in the air ... . There's a chance that I could begin with the dry run-through as early as Monday. In the meantime, I am on a course of 50mg Prednisone steroids to reduce the pain and inflammation I've been experiencing. That has it's whole own set of side effects: crazy dreams, shakes, swelling and eyeball-popping-out feelings, but it gives me the energy to get through the day.

This plan sounds very promising and I love the idea of getting directly at these problem areas without all the residual side effects. Of course, we're risking the chance of other areas of lymphoma growing while I'm not on systematic treatment, but it's about finding that balance and focusing on the most immediate task at hand.

When the 10 days of radiation are done the spots will be gone, my pain will be alleviated, and I can continue forward with a cleaner slate to work with.


  1. Believe what they tell you! Radiation (I had it after my transplant as an extra boost to my previous areas since I was refractory), was not that bad. I did experience fatigue, and a sore throat because they were radiating my neck. But that's it. And, the process itself is crazy easy. The tattoo was the only thing that hurt and it was a tiny mark. I love my little blue dots. :) It took me like 20 minutes from walking in, changing clothes, getting zapped, and walking out, which is why I guess they feel justified in making us do it every single day. Consider this a downward dog. Not exactly a rest... but not exactly a headstand either. :) ALL MY GOOD (RADIATING) VIBES!

  2. I say... ZAP it All AWAY!!!!!!!!!!!! Sending all good wishes- enjoy Manhattan!!!!

  3. Send in the beams to clean up you sites and have you feeling good again. Enjoy your time in NY. Such an opportunity in that respect. Not the best way to experience the city but might as well take advantage of whatever you get to do on your free time while in NY. Good luck, donna and don

  4. Tania CHrzanowskiMarch 14, 2012 at 8:55 PM

    Hope you are staying strong! Thinking of you!

  5. Thinking of you and hope everything is A-OK! In our hearts and prayers!!

  6. Sending good wishes and positive thoughts; so hope that you are feeling well! Take care and know that SO many are with you always!

  7. How are you doing? Thinking of you so much.....

  8. Dear Karin,
    My dear friend was just diagnosed with Hodgkins and started ABVD. I've been reading blogs trying to understand more of what she is experiencing in order to be a better support for her and I found your blog from the link on Stephen's blog. I've spent the past few evenings reading every post. I am so amazed by your strength and honesty and courage. I'm amazed by the incredible support you've written about from family and friends and your dear husband and puppy. I think you are wonderful writer and a phenomenal human being and I dearly hope that things are much easier going forward. As hard as it has been to read about the disappointments, I've been inspired by your joys and successes as well. It feels strange to care so much about someone I've never met, but after reading this, I care about you and those around you. I sincerely wish you and your loved ones the best. I sincerely wish you and your loved ones the best. Sarah

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