Radiation Simulation

Well, this was not the most pleasant experience (but compared to some of the other things I have experienced with treatment, it was a piece of cake!). I think the most disconcerting thing was having to be completely topless on the table for like 30 minutes. I was pretty cold and all I kept thinking about was asking for a blanket. They told me it wouldn't ever be that long when they're really doing it, so in the future it will be over before I know it. I didn't get my tattoos this time, just a whole lot of permanent marker to hold the spots. They told me I could shower but couldn't scrub until they had the tattoos on there. They will use the marks to help line me up again on the first day, and then give me the tattoos and the first dose of radiation. It will take about 10 minutes and I will go in every day for three weeks and then it will be over!

Anyway, they said it will be radiation to the neck and chest, at a relatively low dose since it's just consolidating the stem cell transplant, and that I will start on Wednesday February 2nd and go for 15 days. They said I should start to feel the effects (fatigue, sore throat) near the end of treatment- perfectly timed for the massive four-day campaign meeting I have scheduled at work! Ah well, I have worked through two kinds of chemo and a stem cell transplant, I think I can work through some radiation fatigue, haha.

I am really looking forward to 2/21-3/28, when I will get to have the luxurious Adams-Morgan apartment (with cable, a dining room table, and a treadmill with its own TV!) of a co-worker while she is off on a writing retreat in Texas... ALL TO MYSELF. Yes... space, privacy, amenities... doing whatever I want at whatever hour, not having to share... I love my life and housemates, but have to admit that one of my favorite things in the hospital was plenty of alone time.

Anyway, I will get through this next month and the stupid radiation, the stressful series of meetings, and then reward myself with this great month in my own apartment, working from there between treadmill runs...

Always gotta have something to look forward to!

Oh well,

yay!

remission!



dang, it took long enough!



radiation starts next week and of course I will be faithfully posting about all THAT fun...

:)

Doctor Visit Updates Pt 1

I went to visit the radiation oncologist, Dr. Saini, at GW Hospital. She was very nice and explained a lot about what to expect. She is going to consult with Dr. T and the Hopkin's doc about exactly what kind of treatment plan we are looking at, but it seems like I should expect about 15 days (3 weeks) of radiation to my neck and chest. I will go in next week to get the simulation done- they will strap me down to the table and give me my tiny blue tattoos and line things up where they need to go. I am ready!

On Wednesday I had my post-SCT PET scan, and now I have about a week before I see Dr. T and get the results. I am not tooooo worried about it because we are planning to do radiation, whether there are still spots or not. The only bad thing that could feasibly happen would be growth in different spots than I have had it before, especially if they are below the diaphragm as that would rule out radiation. Ideally the scan will be completely clear, but considering I have yet to have a clear scan since diagnosis, my hope rests in a significant reduction that WILL be completely cured by radiation.

I have started to sprout quite a few hairs on the top of my head, but none around my ears (still smooth and soft there). I am back to working about 14 hours per day and barely having enough time to eat/sleep, but I am starting (starting!) to figure out a new pattern. While part of me wants to continue to "take it easy" the other part of me is scared that I will relapse soon and wants to get as much accomplished while I am feeling this awesome as I can! It's complicated.

I have a ton more to write about (non-cancer related) but I will save it for another day because I have some work to do right now :)

Love

Tiffany

Haven't posted much here in a while, as I am feeling great and totally too busy to think about cancer...

I am doing great and feeling 100%, maybe even 110%

I am dreading the radiation side effects (Hodgkin's board has some yucky stories), but looking forward to getting the treatment anyway. My gut tells me that there might be something showing up on the scan in a couple of weeks, but I feel lucky that we are planning to do radiation regardless. It makes the scan less important. I try not to think about what would happen if I relapse soon after radiation. I hope that I can get some work and life in before that time, if it comes!

Scan and first radiation oncology consultation will be Jan 18 and 19... nothing but fun until then!

Tiffany

My Elementary School Pen Pal

I am writing to share some sad news that I haven't quite processed yet, and hope that by writing I can ease some of the pain. Some of you know that I am a pen-pal/mentor for a 3rd grader in Missouri. Her class is part of a program called "In2Books" where they pick a book to read, and adult penpals from around the country read the book with them, and then we write each other about the book. It's supposed to help the child develop critical thinking skills, as well as practicing using the computer, spelling, and grammar. It's a great program.

My penpal and I read this book called "A Letter to Mrs. Roosevelt" and we had just written our first set of letters about it. My pen pal and I share some things in common, we discovered. Just like the little girl in the book, we are big sisters to precocious little brothers and we talked about that.

I got an email from her teacher this morning saying that my pen pal was no longer in the classroom because she had moved. Apparently the mother was at work on Christmas Day (a tragedy in itself), and the kids were left alone and one of them decided to cook breakfast and accidentally started a fire that burned their house down. Luckily everyone escaped unharmed, but there was too much damage and the family had to move.

I am so upset about this, probably projecting my own memories of my own house fire when I was in elementary school (3rd grade too, actually) and my own family having to move. I wish I could talk to my pen pal and tell her I understand what she is feeling and how scared she must be about losing her home and having to move and change schools, but the privacy policies that (rightly) protect the kids don't let me do that.

I guess I am just writing to share this and hope that you can please send some healing energy to my pen pal and her family. I am literally in tears writing this....