Radiation Discothèque

On the table ready for blast-off

I never wrote in-depth about what this crazy thing called radiation was like. Now that those 10 days of targeted shots are haunting with long-term side effects, it seems appropriate to revisit this past spring.

March 8-21 was spent in New York City getting daily radiation treatments at Sloan-Kettering. The treatment was necessary to free my T-7 and T-10 vertebrae and my lower sacrum of some cancerous clusters that had grown and were causing me significant pain. If we didn’t eradicate them immediately, the risk was there that the cancer cells would break down my bones and collapse my vertebrae – a scary scenario. So radiation it was. The potential damage from it (like the lung inflammation I’m now experiencing) was far outweighed by the immediate danger I was in.

So to NYC it was. I was able to again secure a spot at American Cancer Society’s Hope Lodge so that I could easily commute uptown versus across states to make it to my sessions. I’d traverse there by subway, absolutely loving the energy of the morning commuters around me. The subway cars would be packed and I’d sludge up long lines of stairs and escalators to get to street level then join more morning New Yorkers pouring into the streets and traversing the blocks of the Upper East Side.

I’d pretend I was going somewhere much more enticing and cool than radiation treatment, traveling with my ear buds in listening to whatever artist in particular would get me pumped that morning. Most often it was the Into the Wild soundtrack with Eddie Vedder as I loved the juxtaposition to the gritty city. I molded into the habits of the others around me, often standing with one hand around a pole and another holding open a book as I read through the stops from Herald Square to 64^th and Lex. I learned the system and the maps and the shortcuts well. Despite being there for treatment, I adored my time in New York, especially being alone in New York for most of it, though the weekend company was welcome. It sated that long-ago desire to be a young career woman living in the bustling city. Two weeks was just enough.

7 States.13 Days. Back Home in One Happy Piece.

Taking it all in at Rainbow Vista, Valley of Fire, Nevada

This is one of those get-everyone-up-to-speed blogs to update my health and life status, as I know so many of you care and are wondering what is happening. Then, I will backfill chronologically with the huge backlog of blogging I have to do. So – like it or not – you’ll be reading a lot from me from now on. I have much to share and many stories ready to burst – about my cancer treatment and life otherwise.

I’m back home in Connecticut after slews of wonderful traveling. The trip out to see my sister in her Las Vegas, Nevada element finally happened after her living out there for a year and a half. That my parents and brother could be there too was an incredible bonus to be able to have that time as the Dubreuil family. The fact that it all tied in with a childhood friend’s wedding in Malibu and that Craig and I got to spend a weekend in Los Angeles with each other and several more of our Connecticut friends and Craig’s adopted second family since childhood? This was an even bigger stroke of serendipity. All worked out so well.

It was an incredible trip full of beauty of all kinds. Did I feel like a million bucks the whole time? No, of course not. But I live on a different wellness scale, and I was thrilled and proud and astonished and how well my body did with all the activity. The reason I went back and had a PET Scan on the Friday before I left on vacation was because I had three nights of soaking night sweats and was having a lot of chest discomfort. This prompted an emergency visit and scan though I had just returned home from New York City after completing radiation on that Wednesday. Because I was planning on going away the following week, we needed to assess what was going on. As I wrote in my last update, the PET Scan looked overall pretty good; the clean areas on my sacrum and spine no less than astonishing. It wasn’t consistent with how I was feeling.

Those feelings may have just been effects from the radiation and coming off a med. The radiation gave me extreme esophageal irritation to the point where even a glass of water hurt to swallow. I had never felt that before and my hope is that I misinterpreted that chest discomfort to be lymphoma creeping in at a rapid rate, because it’s not.

Life is Full

My professional waiting-painfully-long-in
-medical-exam-rooms-for-news face.

I have many notes and seeds for blogs ready to burst. But I've been so busy with wonderful adventuring that I have not had the time to write. Instead I've been out living and collecting wonderful stories to be able to relive again when I get to writing them. This is a wonderful position to find myself in for a change: my life has been rich and full, eye opening, and transformative over the past month.

I lived in NYC for two weeks and experienced Manhattan to the fullest. I received highly targeted radiation to the two problematic areas of cancer growth on my vertebrae and the large area on my sacrum every morning at 8:30am for 10 days. Overall, I felt very well during it, and things went smoothly except for one comedicaly outrageous debacle on the second-to-last day (full blog worthy).

My esophagus is very irritated from the treatment, but besides some deep achiness that's the only thing that's lingering. I'm told it is temporary. More importantly, I had a PET Scan yesterday to check on the other small areas of lymphoma involvement that we have not been addressing while I received radiation to focus on the immediate problem areas. Well, remarkably and unexpectedly, just two days after wrapping my rad sessions, the scan revealed that the three big, scary spots are ELIMINATED!! All that is left are tiny flecks showing divets of where the cancer cells were once collecting.

We were all shocked looking at this scan in comparison to my last. The radiation immediately took care of the problem and my bones are now free of danger and the major pain gone. This is an incredible feeling – a literal weight off my back. Not surprisingly, the small areas of lymph node disease involvement in my chest and in my abdomen are a little hotter on the scan with some new spots creeping in, and I am experiencing some symptoms of this. We are formulating a plan to get those back under control with a next course of treatment.

Overall, it's a very good report for my circumstance. I suppose this is what disease maintenance means. My life of late has been full of good food, culture, weather, parks, tons of walking, clearheadesness, happiness, drive, clarity, and wonderful experiences of both Karin time and close friend and family, husband-and-wife time and love. After some convincing and treatment plan tweaking, my wonderful medical team at Sloan-Kettering gave me clearance to travel as planned. As long as nothing crazy happens between now and then, on Wednesday, Craig and I jet set for a childhood friend's wedding in Malibu, CA. After the weekend in LA, I will fly to – finally – see my sister (my life blood) in her Las Vegas environment. My parents and brother will be flying out as well, and we'll spend the week touring the mountains and deserts of Nevada ... and the crazy Vegas strip ... as a family. It will be wonderful. I look forward to lots of blogging in detail when I get back. I have many stories to tell from the past few weeks.

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.