Tuesday, November 4, 2014

Last 2

Down to the last two treatments. Hard to believe this phase is wrapping up, as well. Once you get to single digits, I was told by a friend who's been on this path (same but different), it would go quickly. That seems to be true.

All in all, I'm still feeling very lucky. I've had a great team here in NH building on my positive experience at MGH. I feel like everyone has been invested in taking very good care of me. Except for a few days, my whole time in Hanover so far has involved the daily Monday through Friday trips to Dartmouth-Hitchcock. It will be quite odd to finish treatment and not see my therapists every day and my doctor and nurse for the weekly check ups. Good for me, but still odd. Already, I have to keep to myself from making the turn into the hospital when I drive by. I will certainly enjoy getting back the time lost each day!

Next up will be coping with the end of treatment. Another friend, also in the club, referenced the PTSD after treatment. He sent me a link to an article, but this PDQ from the National Cancer Institute (cancer.gov) spells it out simply,

"Some survivors  of cancer experience trauma-related symptoms similar to symptoms experienced by people who have survived highly stressful situations, such as military combat, natural disasters, violent personal attack (such as rape), or other life-threatening events. This group of symptoms is called post-traumatic stress disorder (PTSD) and includes avoiding situations related to the trauma, continuously thinking of the trauma, and being overexcited."

"People with histories of cancer are considered to be at risk for PTSD. The physical and mental shock of having a life-threatening disease, of receiving treatment for cancer, and living with repeated threats to one's body and life are traumatic experiences for many cancer patients."

"Fear of recurrence and the anxiety of being a survivor" are particularly significant.

However, there is good news for me! Protective factors: "Certain protective factors may decrease a person's chance of developing PTSD. These include increased social support, accurate information about the stage of the cancer, and a satisfactory relationship with the medical staff." Check, check, and check! Thank you, everyone!

Thursday, October 30, 2014

Count - Ah, Ah, Ah

I'm in single digits now for the remaining radiation treatments. After this morning's, there will only be 5 more times on the table. As Count von Count would say, "Five, Ah, Ah, Ah."

First of the follow up appointments will be in December with my medical oncologist at MGH (bloodwork, etc), and again in March with my surgical oncologist (more imaging). I'm already slated to start (Nov 1) daily tamoxifen which is a hormone inhibitor, specifically an estrogen agonist, and specifically targeted for me since my cancer is hormone receptor-positive. I'll continue to have 6 months check ups and will probably be on tamoxifen for five years, though that will be under review as well.

More immediately by the end of last week, and more clearly this week, the skin in the treatment area - essentially the upper right quadrant of my torso from my sternum to my side and from just below my breast up to just above my collar bone - looks like I've spent a little too much time in the sun on a topless beach. Two places are a little harder hit. Under my arm, there is a patch of skin that is a darkish not quite purple color and it's also starting to get a little raw. The only other suffering spot is across my color bone which looks like a small rash has developed. Since the friction of clothing doesn't help, and I'm already using special ointments (Jeans Cream and Aquaphor), we've added Mepilex patches to protect those areas. Mepilex is this really cool silicone foam dressing that sticks to my skin but doesn't use an adhesive. I can take it off and put it back on multiple times.

If you want to see a photo of the skin and the patch, you can click here. The uncovered skin looks like a shadow, but that's fairly accurate in terms of color. Just below that, you can see one of my treatment tattoos (slightly enhanced by a sharpie each day by the therapists). And, about halfway up the darkened skin, you can see a small horizontal scar which is where the sentinel lymph node was removed. The second photo shows the Mepilex dressing. This is completely safe to open at work, and I am not exposed, shall we say, at all.

Monday, October 20, 2014

Friday, October 17, 2014

2k or 5k?

I'm behind again in terms of posting, but only because things have been busy in a good way. Here is the evidence of my 2k reception (to oncology and radiation) at Dartmouth-Hitchcock.
I'm including it because tomorrow is a big 5k day, the Head of the Charles, a 3 mile head race in Cambridge. I'm rowing again this year with my friend CB. Sometime last March, she did the calculation - 16 weeks for chemo, 6 and a half weeks of radiation, a little time for surgery, "you'll be ready for the Charles." And, she meant I would be rowing with her. At that time, and it still is, about being in the boat together. Over the spring and summer, it was good to think about it on some of the really tough days. Last year, we trained a lot and had a great race day, setting a new course record. This year, despite the surprise move to Hanover last month, we've still had a few rows together - not quite as many as last year - and still continued to train in our singles mainly, just not side by side. It should be a good run down the course. Steering, while still challenging with the buoy line and 7 bridges, should be less stressful since we have no crews in front of us. #poleposition

It's also the first race for my new team. We're in the Club 8+ on Saturday and the Championship 8+ on Sunday. It's exciting and nerve wracking all at the same time. I can't wait. Race day is always a good day. Green Means Go!

Lastly, since it's getting late, an updated photo at a friend's request. It shows my hair which has grown in to a good length, and I'm getting ready for tomorrow. Photo pinched from Anne. Not sure why my eyes are closed, but you get the gist. 2k or 5k? Why not both. 

Friday, October 3, 2014

Slide Control

This week went much better than last week in terms of mentally tolerating the daily radiation treatments. Getting and staying on one (and the right one) machine helped a lot - the initial set up and re-set up were over with so the visits were much shorter. On the first day there was music, I asked if we could keep it on and they said I could pick anything since they have Pandora. Now, as soon as I walk into the treatment room, I pick my music. Even though it will only be for about 4 songs, I have discovered this is my saving grace. One of the techs asked what I wanted to listen to, what was my favorite music. I said I didn't want to listen to my favorite music and then associate it with the treatment. Nora Jones was on the air when I walked in which seemed fine by me - at least it wasn't muzak, Country Western, or some angry 80s rock ballad or even worse heavy metal. Instead, it turns out I have selected Easy Listening (read that nice and slowly for full effect). Nora was followed by Frank Sinatra and that worked for me, too. The music is a nice distraction.

Anyway, here is the chain of events for anyone following along. The whole process takes roughly 90 minutes from my office in Alumni Gym, more on Mondays when I meet with my radiation oncologist. Walk to car, drive to hospital (park for free - score). Go down two flights to the radiation treatment center (room 2K is the radiation/oncology reception area - I kid you not). Swipe in at the bar code reader with my tag (left) and then wait to be called. A few minutes later, and some number of pages into the home decor magazine of the day, I get called to go to the gown changing area where I put on my non-drafty gown (arms through two sleeves then it wraps around from the back and it loops over my right arm, very nifty). Move into 2nd waiting area. Get called into the treatment room, remove the gown (these things will never wear out except from washing) and hop onto the treatment table where they place a bolster under my knees, the custom head pillow is already waiting (not soft at all, hard plastic), and I wedge up against a stop (like a seat but you are lying down) built into the table to keep me from sliding around. As I reach my arms up over my head to hold onto the handles to keep my them and me from moving, the techs remark my tattoos with a sharpie to better see the alignment marks. They use those marks to determine how much to pull on the sheet underneath me to slide me into position. Sometimes, they'll lift my arms to get them in the right place to align me as well. At that point, a red light shines onto me as part of the process. The reflection in the glass of the rotating X-ray disc above me shows an alien looking red patchwork of veins with very small spacing projected onto my bare chest. I can't think of the movie where I've seen this effect before, but it should come to me. On X-ray day, they take a few images at each of the three treatment stations and compare my alignment. This past Wednesday, they re-measured how far each of my sides is from a designated point to make sure I haven't changed in size. Finally, if it isn't an X-ray day, that's it - they leave the room and let me know it's time to start the treatment.

The treatment is delivered through the X-ray machine which looks like a disc from my vantage point, maybe a couple of feet in diameter. It is on an arm which allows it to move in with nearly complete freedom of movement. It usually starts on my left near my elbow aimed at what seems perpendicular to my right breast and then there are a few zaps - I can hear the X-ray machine whirring when I am being radiated. After a those bursts, the disc rotates around me and to the right - next up, I believe, is the supraclavicular region. At this point, I can just see the edge of the disc in my peripheral vision. One or two more bursts, and the final rotation to my right occurs. I can't see where the machine stops because my head is turned up and to the left to keep my chin out of the action. The final two bursts are completed, and then the red light goes out signaling I am done and free to move - relief for my arms, and I can cover back up again with the gown. The total zapping time is about a minute or so and the time from first to last zap is about four minutes. Pro tip - make sure to wait till they remove the bolster and lower the table before disembarking or you'll make the techs nervous.

Then, I'm on my own again to head back to the gown area, apply some of the skin cream to the treated area, get dressed, and head out. Remembering which floor I parked on is the next major hurdle, and then I can drive away. It's that simple. The whole process (despite my whining) really is how my assistant coach would say much wow.

9 down, 24 to go.

Wednesday, September 24, 2014

Radiation Domination

Today marks day 2 of radiation therapy. 

All in all, a tough day. A dear and loved friend lost her dad early this morning. The side effects of his chemo became too much, but in the long run, how doesn't matter as much as the fact that he is gone. I'm thankful to have some hilarious and good, over the top memories of him - who else builds a pole vault pit in their backyard for fun, but my heart aches for her knowing what that kind of loss is like. It also, it almost goes without saying, cuts a little too close to the bone. 

Yesterday's first radiation visit, delayed from Monday due to a broken water pump, was literally painfully long. The lying still isn't bad. I actually don't mind that at all - it's a challenge I enjoy and can keep my mind on. I don't even have to hold my breath. It's not the molded headrest to keep my chin out of the works. It is as hard as a rock and if I hadn't been there for the taking of the (my) head impression, I'd wonder who sat in for me. It's hard, unforgiving, and has a ridge that digs into my scalp. But I've been told it's the right one - I asked. But wait, there's more. As I lie on the table with my head turned up and to the left, I have to keep my arms above my head. Therein lies the rub. The way my arms rest, particularly my right arm, it goes numb within seconds. The other one takes a few minutes. Today's shorter session was bearable with much counting and trying to focus on something else, anything but what was going on, but yesterday's session which included many x-rays and consultations and adjustments was excruciating both in duration and actual discomfort. I've been told that after today it won't take as long to set me up. I can only hope at this point. 

Adding insult to injury yesterday, I found out after my treatment that I am on a back up machine. Part of my plan in moving my treatment out of boston and waiting till now to begin was to ensure continuity - I would only be on one machine and only have one doctor. Toss that one out the window. Once the water pump situation is resolved, I'll be moved to the right machine. Finding out after the fact really irritated me. 

Not much positive to report here - a sore right neck, shoulder, and elbow, a tendency to numbness and aches after the contortions, and a general feeling of sadness as a result of the procedure. Lying on the table, naked from the waste up, feet strapped together, and arms stretched out over my head is a very exposed position physically and emotionally. Being blasted by a high dose x-ray has me asking is this really all they can do? Which leads down the rabbit hole of how bad is this if this process is part of the cure. And, finally, each session reminds me of this sickness. Even though these treatments are shorter than the all-day chemo infusions, which I would never want to go through again and would not wish on my worst enemy, at least I could distract myself. There is no distraction I've found when you're naked and exposed like this. Not yet, anyway. I find this part of the process quite depressing. Somehow, I have to reframe the focus, like I did with the chemo and its side effects, that this is going to make me better, that it is working, and it will all be worth it. It's like I tell my team on the tough practice days - you can choose to have a bad attitude or you can choose to have a good attitude. 

31 more sessions to go. I can do it. 

Monday, September 22, 2014

Pause drill

Quick update.

Radiation did not begin today as scheduled. I got a call this morning a couple of hours before I was supposed to show up. Coming, as it did, during a very densely packed HR new-employee orientation, I lost my perfect excuse to escape. As best I could understand, a water pump, possibly in the radiation machine (really?), was not working. I've been rescheduled for tomorrow at 5:00pm. In a fortunate turn of events, since that is normally smack in the middle of practice, tomorrow is an Ivy League Rest Day which enough on the team lobbied for. #sororityrush #earnedmytrustalready

Rapid fire update.

  • It's been over a week since I sliced open my boat on the submerged part of a tree on the Connecticut. Ugh. 
  • I shaved my legs for the first time in nearly 5 months. Slightly more pleasant than above.  #sharperblade
  • Max is nearly as excited when he sees a golf bag carrier as when he sees a deer. Or, a skunk. 
  • A week of DVW in the books!