Like A Whole New Beginning

For the past few days, each morning has felt like a whole new world. 

Waking up and knowing that I don't need to shuttle myself off to the Farber or BMC, wear another Johnnie or have another IV (at least for now) has been a really strange feeling. Maybe as foreign as when Arial walks on sand for the first time in The Little Mermaid.  While I have lived most of my life as a fully functioning, healthy individual, the past year has certainly taken its toll on both my body and spirit.  Not to seem too melodramatic, there are times when I've almost forgotten what it feels like to be "better" and be capable of doing anything I want without any hindrances. 

While I wish I could run a marathon, go to a Baptiste power yoga class and resume my life as the Energizer bunny's preppier friend, I'm still not there yet - but I am closer than I was. Last Monday (8/30) I celebrated 90 days out of transplant so that means no more food or space restrictions (except no buffets/salad bars for a while). It was a huge victory for me last week when I asked my medical team about eating frozen yogurt (my favorite) and they said that was fine. Obviously my first thing I had on Monday afternoon was peanut butter fro-yo from J.P. Licks.

On top of being restriction free and full of fro-yo, I celebrated another big milestone last week: my last radiation treatment was on Friday! Radiation as a whole has been so much easier than chemo and transplant. It certainly isn't fun - there is nothing nice about having to go to the hospital every day, battle BWH traffic for 14 days, throat problems and a fun, itchy rash on my chest. BUT it is still better than nausea and infusions. Hands down. 

I do think that my radiation team thought I was a bit jaded because anytime they asked me about the discomfort, I always compared it to the pain I was in during transplant (10 out of 10) and this just can't compare. Obviously at times it did feel like someone was stabbing me through the throat but it has never gotten above a 5 or 6 on the pain scale. 

While radiation is over, I am still experiencing the fatigue, throat issues and skin irritation so I am hoping that everything will subside in the next week or so. It's amazing how trying to ignore the fatigue just ends up kicking you in the rear when you finally slow down.

Besides all of my radiation side effects subsiding in a few weeks, I have finally been approved to get rid of the prednisone on September 20.  This isn't really enough time to start looking normal again for my cousin's wedding, but it is going to be a super important day!

I hope you are all well, experiencing good health and good karma. I will post again after I get my port taken out.

xoxo

t

Week Two Begins

Up until last week, things with me have been super quiet hence why I haven't posted lately.  Pretty much my days had been occupied by long walks, going to the beach and trying to heal myself in as much isolation as possible.

The healing would have been a lot better if I wasn't on these damn steroids to heal the pneumonitis.  Of course I have experienced the typical and awful side effects of my dear friend Prednisone like "moon face" (not my description), joint pain in my knees to the point where I couldn't walk up the stairs, terribly tight muscles and of course my favorite, weight gain...  Over the course of the past month, I have negotiated my way down to 20 mg from 90 which is a huge victory on my part. Obviously I wish that I weren't on Prednisone at all but that is a battle I continue to lose.  I foresee another six weeks on this toxic drug.

Last Tuesday I began radiation which has been going pretty well. I'm not exhibiting any real side effects at this point: my throat is doing ok and my skin isn't too irritated -- all positive things!

When I met with Dr. M (my radiation oncologist) on Monday, he outlined what was going to happen for the next few weeks. In a nutshell, it was too risky and dangerous for my lungs to give me the full adult dose of radiation typical for Hodgkin's patients (3,000) so instead he was going to order 2,500, a dose consistent with pediatric radiation. He felt that this lower dose would be much more "kind" to my lungs and that a heightened risk of "tumor recurrence" was unlikely.  The only real difference I see is that the number of treatments I have to go through is less - hooray!!

I think the coolest part of the whole radiation process so far is the blocks they put in the machine.  The blocks help prevent the radiation from penetrating areas that don't need it like my heart and parts of my lungs. The blocks come in two parts: the first is inside the machine and can adjust to different shapes depending upon which area they are about to radiate.  This part is so cool and strangely similar to those toys you saw at the science store as a kid, you know, the ones where you can put your hand in the thing of nail-like metal things and it held the shape?  The second part is this tray that they slide into the machine that has two steel-looking cutouts that are in the exact shape of my vital organs.

My radiation team seems really nice - there are about six of them and they are all so precise (thankfully!) and kind. There have been points in my five treatments where I have felt a bit like a rag doll as they pull on the sheet to move me the smidge to the right they need.  All in all, this process is super quick. I might be on the table for five minutes, at the most!  The past few days, I have gotten in and out in less than 20 minutes which is so glorious and unlike chemo.

The next two weeks will be huge milestones for me: on Monday, August 30 is 90 days so that means no more restrictions and on Friday, September 3 I will finish radiation. I can't even tell you how exciting this is.  More updates on radiation to come.

xoxo

tiff