Monday, December 22, 2014

Post game (after treatment)

Today was my first post-treatment (survivor) appointment. Going back to November, suffice it to say, I got over not being seen by medical professionals everyday very quickly after my final radiation treatment. Celebrations abounded. Cupcakes were baked (and consumed), my colleagues took me out to lunch, and then on the weekend more cupcakes were produced (by my team). I even got a diploma (really, these are for the kids) for completing my treatment with such a good attitude. Tears were shed frequently, but that seems to be my m.o. these days - emotions are dialed up a bit for both the happy and sad spectrum. 

It took about four and a half weeks for my skin to look normal again. What I hadn't noticed until two weeks post was the small patch of affected skin on my upper back, mirroring the treatment area around my collar bone - that radiation goes right through. The skin looked tan more than anything else, but it was the itchiness that tipped me off that anything was going on. 

Back to the present, today's visit was with my medical oncologist. The visit included all the standards - vitals, blood draw, physical, exam, and arm measurement. Weight, temp, and BP all normal. Blood draw will show how my liver is doing (should be fine, but confirmation will show nothing has changed with the tamoxifen); it takes a few days for results. After the exam (skin check, palpitating, listen to lungs), my doctor said, "perfect." (yay!) I also had my arm measured, adding to the periodic comparison before and after surgery, looking for lymphedema and any other changes in size (none).

My next visit at MGH is with my surgeon in March and will include imaging. Then, I will be on an every-six-months schedule. Prior to that, I will be enrolled in a follow up survivors group at Dartmouth-Hitchcock. (It would have been at MGH, but that's a little far for a commute.) Looking forward to that, really!

Little by little, and some days more, I am embracing this whole survivor business. From having people think it's a bad-ass hair cut to only feeling tired from a lack of sleep or a hard workout, it's pretty good! And, the extra time each day - remarkable, not to mention the improved availability of mental bandwidth for things other than cancer. 

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!

Wednesday, September 10, 2014

Doctor-Doctor-Doctor

I returned safely from the Amsterdam and the racing on Labor Day. Results were, for the most part strong, though many of the athletes were affected by unfair conditions on the course. Even for an outdoor sport, it was a tough go watching so many athletes in a position of having so much out of their control despite the countless hours of training and devotion to technique. It was heartbreaking to watch whether you've been there competing at that level or not.

After my day of rest, it was time to dive into a series of doctor's appointments which would close the loop post-surgery and pre-radiation as well as set me up for the transfer of treatment to Dartmouth-Hitchcock. Tuesday, first up, MGH and my radiation oncologist. We went over my pathology report which had been updated in the form of "final report." Pre-chemo, I was originally diagnosed as T2 N0 where T indicates the size of the tumor (between 2 and 5cm) and N indicates what is found in the nodes (0 means none, clear). Following the chemo and surgery, I am now T1 (the tumor shrank to under 2cm) and N1 (one positive node). As planned, this indicates radiation therapy in my future - once a day for 6.5 weeks, Monday-Friday, or 33 treatments. What we discussed was where to have the treatment which boiled down to my right breast where the tumor was removed, under my right arm to get to the remaining lymph nodes, and above my right collar bone where the lymph nodes under my arm drain through. Short term side effects include hair loss at the site of radiation (not like chemo where I lost all my hair), skin issues (discoloration, loss of suppleness, burning, peeling, rash), and fatigue (mainly toward the last few weeks and likely less intense than with the chemo). Long term side effects could be lymphedema (swelling of my arm due to damage sustained by the lymph system) and brachial nerve damage (resulting in loss of control and strength in my arm), as well as an increased risk of skin cancer at the treatment site and other tumors/cancer in general. Both of the major long term side affects which could wind up affecting my arm are less for me because of my age, good health, and fitness/exercise. The best long term side effect is that overall, the radiation lowers my chance of recurrence of breast cancer by 30-40% such that I will have a less than 5% chance of recurrence over 25 years. That works for me!

The next day, Wednesday, early in Hanover, I met my radiation oncologist at D-H. We also went over my pathology report and agreed on the same treatment plan. This precipitated a radiation planning meeting for the following Monday. Afterward, it was great to then have a whole day in Hanover to get going on the transition to a new job in a new town, but at the end of the day, another 126 mile drive back to MA.

Thursday, day 3 of doctors, I met with my surgical oncologist at MGH to close the loop on the follow up team meeting - I had met with my medical oncologist right before going to Amsterdam but at that time the rest of my team was on (deserved) vacation. From my my surgical follow up, it was confirmed that the incisions were healing well and that the scars and puckering would continue to fade and smooth out. None of that bothers me and since nothing is terribly sore anymore and is healing well, I am very happy.

Time at home Friday-Sunday allowed for some socializing, some packing, some work from home, and some rowing before heading back to NH for Monday's early morning radiation planning meeting at D-H. Monday involved going over the treatment plan again and essentially staging a simulation. My radiation oncologist marked the treatment area with a sharpie and some indicator beads that would show up during the CAT scan. The three sites within this zone are basically my entire right breast, under my right arm where the lymph nodes are located, and the supracavicular nodes (think just above the really bony ridge of your collar bone). This would enable the team of nurses and technicians working with my doctor to line me up properly and plan for the correct dosage of radiation. It turns out, my surgeon placed (microscopic) clips where the tumor was removed which makes if very easy to see where I need treatment - these clips show up on this kind of imaging but are way too small to feel. After positioning me just so, I was marked, literally tattooed with 4 tiny dots - two on my sternum one each above and below my breast about 4" apart, and two others on my sides one each under each arm about 1/3 of the way above the lower sternum mark. They really look like small, dark freckles. One more trip in the CAT scan allowed them to adjust my chin out of the way. I'll have to look hard left for the treatment. Each treatment itself isn't very long, maybe a minute or so. And, just like an X-ray, I will not be able to feel the radiation therapy even though this amount of radiation kills fast dividing cells which is not at all like the lower amount you get at the dentist's office or to look at a broken bone - that amount does not kill your cells.

I will begin treatment on September 22 and my last day should be November 5. I would be starting a week sooner, but decided to wait out for my doctor's return from the annual American Society for Radiation Oncology Conference Targeting Cancer (I think I have that right).

Finally, I became especially aware of the time frame of all of this when I got a call from my old mammogram provider reminding me of my 6 month check up. (I won't be going since my next one is scheduled at MGH 6 months from now. Sometimes, it is hard to believe this all began 6 months ago, that it is over 2 months since my last chemo, and that I am feeling as good as I am today. Beyond that, life is the general craziness that ensues at the beginning of every new school year as the returning students come back to campus and the new ones arrive for the first time. Throw a somewhat bossy/needy dog into the mix, two brand new coaches, a first practice in only a few days and you've hit the nail on the head on the level of the excitement going on around me.


Sunday, August 24, 2014

Amsterdam, The Netherlands

Three and a half weeks past surgery, almost a full 7 weeks post-chemo, and 11 days since my last post and I am doing well. The follow up with my medical oncologist was uneventful. The pathology report showed clean margins on the tumor which measured a little over 1cm in the biggest dimension. There was a micromatastasis in the first sentinel lymph node but it is no cause for concern. Any others were likely zapped by the chemo which is what it was meant to do. Both of those results mean no more surgery and no more chemo. Onto radiation!

In the meantime, since my last post, a lot has been happening. The CPET went well, as well as could be expected especially if you are a rower who has ever done a VO2 max test. The technician set up the erg for me and we picked a 12' piece with shifts each 2' to step up the watts in a linear fashion. I made it a little over 30sec into the final shift, and from the data it looked like I had definitely peaked and plateaued (good for providing the desired information). If I heard correctly, I was on the order of 165% of my predicted (age/height/weight) capacity. I'll have to look up what it was 15 years ago, but only when I'm feeling particularly secure, I think. While the technology may have improved to measure and record data, the actual test wasn't any easier to do. With a plugged nose and having to breath in and out of a tube held to your head with a neoprene mask, not to mention more than a half dozen or electrodes, it was quite the set up. Sorry, no photo. I remembered too late. I'm not as fit, understandably, as I was before the cancer treatment, but the outcome of the erg piece honestly wasn't as grim as I had anticipated. 

My hair is definitely growing back now. The peach fuzzy hair I shaved off has been replaced by about 3mm of normal looking, dark hair on my scalp. On top of that, just as I was down to the last eyelash on each eyelid, the barest fringe of eyelashes became noticeable. At roughly the same time, the light hair on my face returned. I no longer feel weirdly naked and exposed. And, last but not least, my eyebrows have just started to grow, too - they look faintly colored in, but are more and more noticeable every day. Eyebrows certainly add or convey a lot of expression that is notable more for its absence. Still waiting on some nose hair to fill in and help with the filtering system, but this is an excellent start, for sure. It only continues to get better from here on. 

Post surgery, I have also resumed rowing and running - the week off following surgery was tough without exercise but definitely the right thing to do since I was physically tired and needed to protect the surgical sites, and I'm glad I toed the line. This week, in Amsterdam at the World Championships, I've been able to bike (in the gym or following practices along the race course, a fun but frightening peloton), run, and erg with some regularity which is nice. It certainly helps to have a physical release at these kinds of events. I'm tired at times, sure, but mostly that is a combination of jetlag, cellular recovery, and being a hardworking coach. 

I do have some really big new in the plus column for a change. I have a new job - I know, I'm dropping the bomb late in the post. I am now the Head Coach of Dartmouth Women's Rowing. Bet you didn't see that coming. Neither did I. But when I got a call about the position mid-July I thought why not explore the possibility. It turns out  liked what I saw on my interview, but tried to think practically about it being a viable option. Then, after what seemed like too long of a time to get a good phone call, it came in the form of an offer, and I said yes! Now, when I get back to the US, I will have two major tasks in front of me. Arranging for radiation to be moved to Hanover (that shift is actually underway) and getting up to speed seriously fast with Dartmouth - a new assistant coach, learning more on who my new team is, and finding a place to live among other tasks. 

Until then, back to the racing, writing some emails, and more when I get home. 



Tuesday, August 12, 2014

P.P.S.

Post Post Surgery

Once again, I am past due for a post so here is another very brief update. And, again, as last time, no news is good news. 

First off, feeling much less sore from the surgery. The swelling and general discomfort has been replaced by a somewhat normal looking bruised area on my right breast, as if a bruise can look normal. The steri-strips are still going strong on both incisions, there and just below my underarm. The stretches and exercises for shoulder mobility and to prevent tightening around the surgical areas have been effective if not poorly written. Give me a specific amount of time and number of reps, and I'm happy. The vagueness of 3-4' total, 15' per day, or "stretches for any time of day," really needs to be rewritten. 

Tomorrow, I am going in for a CPET,  a Cardiopulmonary Exercise Test designed to determine my baseline prior to radiation, or as it says in the pre test instructions it will "evaluate my exercise tolerance ... to maximal effort." Uh oh. Good news - it will be done on a bicycle, treadmill, or indoor rower. 

Thursday, meeting with my medical oncologist, and, I hope, reviewing the final pathology report which is due out on Wednesday (tomorrow). This is the precursor to getting set up for radiation treatment to begin in September 

Lastly, my hair is definitely on the return. I had nearly a true 1/4" of very wispy, extremely fine hair starting to appear on my head which is what I had expected timeline-wise. I did shave it off this morning, however, because it was fairly patchy and growing unevenly - not a good look. I'm ready, however, and will wait for the real stuff to start growing back. And, yet, at the same time, I am down to a total of 19 eyelashes evenly split along both upper lids. Fastest growing returns first.

Thursday, July 31, 2014

Post Surgery

Surgery went well yesterday! Two boxes checked, only radiation left to go, probably starting in September.

poster on my door early Wed AM
It was a long day. It started out very well with a good row on a beautiful morning on the Charles, and the fantastic poster (left) taped to my front door before that. I didn't have enough time to make it over the HOCR course twice, but still managed to get in 10k - no complaints. I was a little dry (dehydrated) since I wasn't supposed to drink or eat after 10pm the day before, and was only allowed 8 ounces of a clear beverage up to 4 hours before my procedure. Banking on them meaning the surgery (noon) but not sure if the wire insertion counted (10:30), I drank those 8 ounces during the beginning of the row which still kept me good for either deadline.

The row was followed by a thorough cleansing with Hibiclens Antimicrobial Soap. On Monday, Tuesday, and Wednesday, I was instructed to wash my "body gently for five (5) minutes," which helps with the "prevention of surgical wound infection." It was pink and not unpleasant smelling, but it didn't lather up very well. I had to laugh because the washing instructions also included a line about not shaving the area of my body "where surgery will be performed." These must be generic instructions and not geared toward someone with essentially a total loss of hair. That was followed by patting dry with a clean towel and donning comfortable clothing - a pair of DHA sweatpants and an old, white button down (no pullovers or t-shrts was the recommendation, go with buttons).

2 gowns, 2 socks, glasses - that's it
After arriving at MGH just before 8am, I checked in and waited about 40' to check in with a nurse - when had I last eaten or had anything to drink, when had I bathed with the soap, when had I used the bathroom, what pills was I taking and when, etc. I passed that test, fortunately, and then got to change into two gowns - one opening in back, one opening in front. And my vital signs were ok - BP, temperature, HR. These questions were asked almost every step of the way. The one question that really made sense was their asking me what the procedure would be - they knew, and I knew, but it is a way to make sure everyone REALLY knows what's going on. As part of the checking in process, an IV line is inserted. Usually, I am a what they call a good stick. But, I was dehydrated which means my veins were not as veiny as usual. The first attempt into the back of my hand went in and then came out, but was still under the skin - not the ideal location to receive IV fluids. Attempt two went well and into the vein in the crook of my elbow. Pro tip - any time you're going for a blood draw or to make a donation, make sure to be super hydrated - it makes the needle going in so much easier.

Next step was having the wire localization (not much thicker than a human hair) set up to mark the

nuclear radiation warning card
tumor so my surgeon would know where to make the incision. I got wheel-chaired to imaging in another wing on another floor for this procedure They weren't as forthcoming about this procedure as I had anticipated, or maybe I just underestimated it. The wire is inserted during a mammogram with a little lidocaine. I was going to be under compression for so long (5' each direction), that they provide a chair to use. After the first compression, they switch the orientation by 90 degrees. But that wasn't all of the prep. A doctor from nuclear medicine showed up with a radioactive trace that indicates where the sentinel lode is located under my arm, again, so my surgeon could tell where to make the incision. That was injected after the wire was in place. Let's just say it stings a lot and it is nearly a dead-center, frontal assault. Ouch. Do the math. They gave me a little business card as verification that I will be radioactive until August 2 in case I get stopped in one of the tunnels, by a police officer, or at the airport. Then, I was ready for surgery, and got wheeled back to the waiting area back upstairs where I watched tv for about 45 minutes (old rerun of the Gilmore Girls - nearly all daytime tv is pretty bad and CNN was going to be too much).

After taking away my glasses so they wouldn't get lost during the operation, they wheeled my gurney to just outside of my OR (41), the Induction Room. The waiting area is the hallway, literally. If you've seen the Fugitive with Harrison Ford, picture the area where he looks over the little boy with the chest films. A hallway. That's it. And they call it the Induction Room. Lame. At this point, they covered my head with a shower cap style hairnet. Seriously? What did they think was going to fall out and contaminate the incision? At least, I had as many warm (135F) blankets as I wanted. Then, the same list of questions from the Anesthesiologist plus a few more about past surgeries. I was able to name drop (it couldn't hurt) and made sure to let him know that my HR would be about 40-45 while I was under and that that is normal for me (so that I wouldn't be over medicated trying to get my HR and BP up to the sedentary level). It was then that I found out I would have a tube inserted into my trachea - ugh - standard operating procedure, as they say.

Finally, it was noon. Right as I was being wheeled into the operating room (very bright lighting, especially compared to the hallway), they started me on some relaxant and after moving from the gurney to the operating table under my own power, that was all I can remember till I came to in the Recovery room. As I understand it, my surgeon inserted some blue dye that wouldn't filter out of the sentinel lymph node so that when she made the incision at the radioactive site she could also see the first node which would be blue. That node and the second one were removed and sent to pathology while she continued and made the incision at the end of the wire. The tumor was then removed (with clean margins, they check for that), and then the bulk of the surgery is putting everything back nicely (cosmetic) and making nice seams. I am peeing a pale blue, and that could last for a few days. The nodes are clear of cancer, but it will be 7-10 business days before the full pathology report is back.

After coming to in the recovery room, where I finally got something to drink (ice water) and to eat (saltines and graham crackers), I was home around 5pm.

My throat is still sore today when I swallow, slightly more noticeable than the soreness from the surgery which is easily managed with some ice and tylenol or ibuprofen. And, I'm convinced that some of the soreness is from being in the contortionist positions required by that mammogram yesterday. Walking around is allowed for now, more brisk walking approaching a week out, and then I can ride a stationary bike one week out, and rowing can commence two weeks out.

Monday, July 28, 2014

Homeward Bound

No post in a week again, but I have a good excuse this time. Yesterday, the World Rowing Under-23 Championships wrapped up after a busy five days of racing, a total of nine days on site. Both of the boats I was coaching had very good results, from a gold medal to an eleventh place finish in highly competitive events.

Up next is a busy week. Today, I am flying home. Tomorrow, I wrap up the final visit at MGH for a fatigue study associated with chemo and breast cancer. Then, Wednesday is the big one - Lumpectomy Day! Phase two, as I see it, will be over and done with before I (almost) know it. While that may be in part due to jetlag, I'll take it!

This past week has been my first third week of a cycle and I have to say, what a difference. Even with the fatigue I felt at the end of the 8 weeks of Taxol, I have felt noticeably better this week. Noticeably!!! I worked very hard and long hours at the regatta and I didn't feel nearly as wiped out as I had the last few weeks at home, particularly week one following Taxol 3 and 4. I even got exercise 6 out of the last 8 days, and it wasn't a struggle - not any more than one would expect in an un-air-conditioned gym anyway. It is really heartening to me how good I feel, although there is still a way to go. 

Two physical updates of note. The purple fingernails from the nail bed attack of the Adriamycin are just starting to grow out long enough to clip. The base of my fingernails looks normal again, and at the last clipping, I had a little collection of faintly purple slivers of nails. Number two is that I have the tiniest amount of peach fuzz-like hair on most of my scalp. It is barely noticeable, but I the right light - a hotel bathroom with a half dozen mirrors and at least as many light bulbs - it just shows up. This doesn't mean the chemo isn't working, it's merely a part of this whole, weird process. However, it will still be a while before real hair starts to grow back. 

Finally, for those of you who we're wondering, and if you were wondering you probably had already guessed the answer, yes, the Head of the Charles guaranteed 2x entry is in. Time for the callouses to develop - let's go skin, step it up, at least by October. 

Sunday, July 20, 2014

Varese, Italy

Alive and well, and coaching at the Under-23 World Championships held in Varese, Italy! Day 14 never felt so good, especially staring down something new - Day 15! 

Here I am, hard at work today setting up the boat for the lightweight men's double scull. It has either been raining or about 75% humidity AND over 80F. Keeping the sun off. "Tomorrow is forecast to feel cooler than today." Not much is more fun than this - seriously. #iloveracing


Thank you for the photo, Allison (c/o USRowing)!

Monday, July 7, 2014

Red Buoys

I am officially in the red buoys of chemo, the last 250. My white blood count was high enough to go ahead with today's transfusion. I have to be very careful the next few weeks to avoid getting sick - extra rest, plenty of fluids, and Howard Hughes style hand washing (my descriptor, not the medical profession's) because it will continue dropping before it starts to improve in later on in about three weeks. I am not taking Neulasta now because the white count does not drop as precipitously as on the A/C and, also because of possible side effects. The Neulasta can cause bone pain in the hips and sternum, typically, and we already know the Taxol does that to my legs. Combining the two could make things unbearable. If my count hadn't been high enough, I would have probably just had to wait it out another week. However, I am very happy tow stay on schedule and to have that bigger window between today and surgery.

Surgery is on July 30.  I will show up at 8:00am and head home around 4-ish if everything goes according to plan and nothing else comes up that day causing a delay. I haven't heard of too many emergency mastectomies, so I should be good to go with surgery scheduled for around 12:00pm.

Because the tumor shrunk so much with the chemo, it is very hard to feel. (Yay! Let's hope it zapped any stray cells trying to make a break for it to set up elsewhere.) What had been just over 2cm is now 1cm (and possibly still shrinking). I will start the day following checking in with an imaging guided insertion of a fine wire (3-4 human hairs in size) right into the tumor. This way, my surgeon will know where to make the incision. Final imaging will reveal whether the tumor stays vaguely ball shaped the next two weeks or if it is reduced to s group of foci cells. Either way, out it comes.

I will also be prepped for location of the sentinel nodes, the first two nodes into which the breast tissue drains. These are the same kind of nodes that are felt under the chin in the neck or in the groin - part of the lymph system which helps control infections and keeps things clean from the inside out. The sentinel nodes are located under the armpit. To find the place to make the incision, I'll get some radio active dye ahead of time. Using a Geiger counter device, the correct nodes can be traced and located under the skin - cut here, X marks the spot. I'll also have some blue dye injected to visually mark the first node. The dye will be too large to easily pass through the filter system in the node. Et voilá, remove the blue node and its neighbor. Apparently, I will pee blue for a few days. My surgeon assured me it would not be Yale blue (pretty funny), however. I can only imagine this being the same color as the Gatorade I mix up for my team each spring. Oh. Boy.

While my surgeon moves on to removing the tumor, the nodes will undergo a pathology review to see if any breast cancer cells made it that far. If they are clean, that is that. If not, most if not all of the nodes under my arm will be removed while I am still under. The tumor and surrounding good tissue (the margin) that is removed will be examined right away for a clean margin meaning there are only healthy, good cells encasing the tumor, and in me, there are no cancer cells left at the removal site. If otherwise, a few more bits will be removed till there are clean margins. The removed tissue will also get get a full work up just like my original biopsy, testing for receptors, cell grades, etc - the whole nine yards. It will take a couple of weeks before results are released.

Next, the plastic or cosmetic part of the procedure will fill out the remainder of the hour and a half surgery. This is what takes the longest of the three components and is to ensure that I don't have a dent where tissue was removed, and, also so there is a nicer, less noticeable scar at the main incision.

Two hours, roughly, in recovery waking up, and I'll be good to go. Instructions are to take it easy for a few days and to avoid repetitive motions for about a week and a half. My surgeon made the universal arms rowing motion when she told me this. What's not to like?!

There you have it. Radiation, phase 3, should start 4-6 weeks after that and is not likely to be as fatigue inducing as the Taxol - hallelujah!

How is this final drip coming? An hour twenty to go!

EDITED 7/8/14 - final drip - done! BOOM!

Tuesday, July 1, 2014

Last 500

My final chemo is next Monday. I'm looking forward to the end of this series of hospital visits. I'm also looking forward to having dinner that night with two friends from my rowing past. Now, it will be an even bigger bit of a celebration.

As usual, thankfully, week 2 of the cycle moves along. I've been feeling good since Sunday morning though still more tired than I expect given my level of activity, but manageable nonetheless. I'm also still surprised when I realize that I am indeed starting to feel better, as I was on Sunday, and that the few days prior were a little harder than I wanted to let on (to myself). Part of me wants to not admit to feeling tired because then it becomes a little too real, and I don't want that to bring me down.

Now, a few thoughts and randomness on the previous 1500 as the last 500 winds down.

Tickets. You need a ticket to get your chemo. This is not the ticket you want. Unfortunately, there is no age or height requirement necessary. Where I go, it is only adults. I can't even imagine. My questions are, who would actually go in my place? And, aren't all my vital signs and blood work in the computer report already and that instead you need a hand written 3x5 card from me? And, let's not forget, I do have an appointment to be here, at this specified time. Hmmmm. Should be easier to do this math.

Skin. My mouth feels great just in case you were wondering. On the A/C my mouth always felt sensitive and on the verge of a sore spot developing so I was careful about flossing and brushing and staying away from toast and other unforgiving, gash causing foods. While my mouth is cooperating with the Taxol, my hands are not quite up to snuff. They aren't callousing as they normally would from rowing. Lots of thin skin and peeling layers. No terrible hot spots, though, just the thin skin. Fortunately, when they normally callous up (as in pre-chemo) they are pretty tough, but right now this is not helping the rowing.

Travel. Of course. Did I just have chemo? Yes, then I must be traveling. Just like the spring racing season, it seems every time I have chemo, it is time to travel. Last week, I was off to Mercer  County for the U23 and Senior World Rowing trials on Days 2 and 3. Hello, New Jersey! Fortunately, I was traveling by car with the trusty dog Max and I could stop when I wanted some rest (which I did on the way home). Next travel will be well past a chemo day and even well into week 2 (shocking - who scheduled this). It will actually be Day 12. How great is that? Day 12! Day 12 is always a good day, followed by more good days. Hoorah! Remarkably, by the time I get home, it will be Day 22. I haven't had a Day 22 yet. Fingers crossed I don't ever have one again.

Familiar faces. None, and that's not a bad thing. The people I do recognize are a few of the nurses. The infusion floor has north and south sections, both divided into at least 4 large rooms, not to mention some of the private rooms along the hallway. There is room for a lot of us. I don't terribly mind the time in the chair itself - mostly it is boring, but I do mind the lost time. For most visits, it has been pretty quiet, not a raucous crowd showing up. Last Monday started no differently. It was nice and quiet, that is,  until the last two patients who overlapped with me showed up - one began watching daytime TV at a volume that was working for me if I had really wanted to hear Family Feud and must have been absolutely blaring for her, and one other patient, part of a couple who are apparently married, at least they were bickering like an old married couple. The woman finally threatened to step outside to warm up in the garden and all I could think was, "I hope so, we could all use the peace and quiet." Maybe he would have been better in a private room, with a closed door policy, just to get some rest. I nearly got put into one of those private rooms that day - not fun. Situated across from the coffee station, it would have been quiet despite a fair amount of foot traffic and peering in, but it also would have been about 5 hours in solitary, a good 4 hours and 45 minutes longer than I would have enjoyed - ugh. Thank goodness my nurse found me a better spot - North 380D and this view - just another perk of Yawkey 8.


Lunch. Is it a free lunch? I don't think so, but at least I don't have to worry about bringing or buying food. Plus, it's fresh and the volunteers are very nice about letting you know everything that is on their cart, even if you probably heard them tell the patient in the chair next to you only 60 seconds ago. Very friendly and attentive service! Last two visits, I've managed the chicken caesar salad, chips, fruit cup, and cookies. Only one more to go. Maybe a perk.

The T. I have been surprised that no one has offered me a seat. I think it must be a fear thing, and not anything personal. Maybe politeness factors in, too. Who wants to make the assumption about someone's health - what they think: are you sick? What they say: do you want my seat? Translation - you look lousy.  It's hard enough to guess if someone is pregnant (and not overweight) - no one (polite) wants to (or should) ask and risk offending the possible mother to be. Cancer? Talk about a hot potato.

Skin, part 2. I feel like that except for my thinning eyebrows and eyelashes, there is almost no hair left on my face. This makes the skin feel more sensitive to the touch since there is no buffer, but at the same time the smoothness is a) a little unnerving, b) weird, and c) not smooth in a not-slippery sort of way - without the fine hairs that are usually there, there is more friction so if I touch my face it is almost like my fingers stick. True hairlessness is over rated.

Next post - surgical update. I've circled July 30 on my calendar - that's the big day.

Sunday, June 22, 2014

No news IS good news

Yikes! It has been a long time since I last posted. I have mentally written about 6 or 7 posts, but none of them made it to the actual keyboard. To cut to the chase, I am doing fine and have good news. Sorry to keep anyone who is interested in the dark the last 3 weeks or to cause any alarm.

Catching up on chemo #6, the second of the Taxol regimen, found me a bit apprehensive and nervous as the day approached. After the acute leg pains in the first cycle of Taxol, I made sure to let my oncologist know what had happened. Not wanting to take narcotics to ward off the pain should it recur or even get worse on the second cycle (a likely possibility given the cumulative nature of this treatment), the other option would be to split the final two cycles into 6 weekly cycles of a lesser dose thereby reducing the side effects. That seemed less than desirable to me in terms of time and visits, but ultimately would put me at the same finish line which would be OK in the long run. More good news: maybe it was being more aware of what the beginning of the leg pain would feel like that allowed me to get ahead of it this time, but it was much more manageable (I slept through the nights), it never felt as intense, and even though it still lasted just over 3 days (and I was on the road, of course, for most of it in CA on a recruiting trip), I am now not worried about cycles 3 and 4. I do not envision the split treatment to be necessary over a final 6 weeks, yay! Another huge plus - no neuropathy. My fingers and toes did not suffer any numbness or tingling during or after this cycle either. Good news abounds!

With the Taxol, the biggest side effect for me has been fatigue. While I don't feel like I have the flu, not that totally run down kind of feeling, I am definitely lower on the energy spectrum. If I run up a flight of stairs, I am breathing hard. Don't even ask me what my splits are on the water where I am just ahppy to be able to be on the water rowing! Anything at steady state (running or rowing moderately) is fine. Anything intense really takes it out of me really quickly. Mostly, though, it feels like I haven't had enough sleep. While I don't feel the lack of concentration associated with sleep deprivation, I'm experiencing just plain tiredness, most days the last three weeks, I have been taking a nap which is one more thing "I don't have time for." I'm not normally a nap person. On the rare occasion when I have taken a nap in the past, it is usually because I have been sleep deprived for more than a few days and a 30' session of shut eye will take care of it, making me feel much better and more alert. These days, I can easily take a 60-80' nap every day. Making time for that takes a different effort, one in managing everything else that is going on in my life which is not always easy. Even if it is something I enjoy doing, I have to take the energy budget into account. For example, I opted out of working our rowing camps this summer. The days dedicated to camp would have used up energy I would prefer to spend on me and the things I want or need to get done (exercise, nap, walking Max, coaching a fast rower or two). Sure, I miss the paycheck, but know it would have cost me much more in nap time and the ability to have time for me more than the cash could have made up for.

One other incidental (and unintended) cost is being public. One friend recently acknowledged that "there's a lot of pressure to stay positive and you probably don't feel cheerful all the time." She's right, this is true. Most days, most hours, I do feel good. I'm generally an upbeat and optimistic person, truly, even though I know some of you are laughing. When I am out and about, it is because I enjoy spending time with people and I am feeling up to it. Being active and actively engaged in life is one of the best ways to not have to think about what I am going through. Being able to say I feel just OK or that I am a little tired is helpful, even if it isn't what someone wants to hear. (I know, people ask how I am because they care, and that means a lot to me!) Leaving early from somewhere because I am tired doesn't feel like I am playing the C-card, it's just part of the energy balance that's going on. It's not like I suddenly have all this free time. I still have everything else in my life to take into account - family and work being the most dominant two. It, cancer, is a lot to take in all at once, and I can appreciate that someone who is finding out about my cancer for the first time can be overwhelmed (I know I was). What has helped me is finding perspective. I've tried to break it up into manageable chunks, the big three of which are 2000m of chemo (finally, I am through that third 500 and into the last 500), the surgery, and the radiation. I've also tried to focus on how lucky I am - good prognosis, otherwise good health, and many loving friends and family.

More good news! On Friday, June 20, I met with my surgeon after a follow up mammogram and ultrasound earlier that day. The appointment was to discuss surgical options and basically review where things stand. Typically, surgery is scheduled 3-4 weeks following the final (July 7 for me) chemo. Waiting any longer than 6 weeks following that would allow for the possibility of the tumor starting to grow again, not good. Results from the imaging backed up completely what my oncologist has been feeling (literally) since the start of the second cycle of chemo back in mid-April that the tumor has been shrinking. While the largest dimension I was given was about 3cm, that included a bit of a finger-like growth off of the bulk of the tumor. Right now, it is hard to tell whether that exists now or not. Either way, looking at what the bulk of the tumor was initially (just over 2cm), it is now a mass of about 1cm. This makes it difficult to feel (as evidenced by the NP's experience on May 27. In order to find the tumor accurately since going by feel won't be good enough (this is where the clip inserted during the biopsy helps as well), a wire guide will be inserted during ultrasound in the morning before my surgery. The wire is about the thickness of a few human hairs, and a hook on the end will lodge it in the tumor. This allows the surgeon to know where to make the incision to go after the tumor. Although we looked at surgery two weeks post-chemo, I am scheduled for surgery on July 30. I was glad to be able to work around my personal calendar given the possibility that I will be out of the country in late July, and that this fits with my surgeon's operating calendar as well.

Tomorrow begins the last 500 in my chemo rowing metaphor, #7 of 8. In a race, this is where I (used to) try to sit up a little taller and be ready to go (empty the tank), and pretty much every muscle hurt. If I experience leg pain or fatigue in this last 500, I know that means the treatment working. Bring it on!

Saturday, May 31, 2014

Taxol update

Woke up in NJ this morning - the 1V8+ and a recently selected 4+ of upperclassmen and freshmen are racing at the IRA National Championship in West Windsor this weekend. Therefore, NJ is no surprise since I drove one of the team vans yesterday from Boston. Training yesterday and today, racing on Sunday, June 1.

6:30am wasn't the first time I woke up, though - talk about a few restless nights' sleep. From about 48 hours in (afternoon of day 3, like clock work), I've been having what I would consider fairly severe leg pains, what feels like muscle, bone, and joint pain, enough to make me wince once in a while and more likely to wake me up or keep me from sleeping. However, by this morning's final wake up, the pain and frequency definitely began to diminish significantly. It has not been a pleasant day and a half, to say the least, but I am sure the worst is over, at least for these two weeks. Because Taxol is a different mechanism than the prior chemo (it blocks mitosis by not allowing the microtubules to pull apart and the cells can't divide), how I did before isn't necessarily an indicator or predictor of how I will tolerate these second 8 weeks. Side effects can be cumulative, so starting out at a low level is good.

Muscle aches and fatigue are common symptoms of this new (to me) chemo and typically last 2-3 days. Ibuprofen and Tylenol to the rescue. Sort of. I took as much as possible and overlapped the two for some partial relief. Putting my legs up didn't help. Sitting down didn't help. Walking or exercising seemed to provide some temporary relief and I am getting a good stationary bike workout in this morning. Today does feel like muscle soreness but not as though I can relate it to a particular activity. If I were to go run in the stadium for the first time in a long time, I can be sure my calves and other specific leg muscles would be sore. These aches I have now have just been indeterminate or rather non-specific pain and soreness. I will take it as a positive sign that the Taxol is working, doing its thing. And, now that I am feeling better today, I will say emphatically that I would trade it for the stomach upset of the Adriamycin and Cytoxan. I might not have agreed with future self at 2:00 or 3:30 this morning.

Another common side effect is neuropathy - numbness and tingling in the fingers and toes - also with a typical 48-hour onset. Thankfully, I did not experience any of that.

Work out done. Post done. Time to get back to coaching!


Tuesday, May 27, 2014

2nd Thousand

Today marks the 2nd half of my chemo treatment and the (planned) switch to Taxol. I went in today because the Center was closed yesterday for Memorial Day. Instead of meeting with my medical oncologist and oncology fellow who were not in, my appointment was with an oncology nurse practitioner who happened to be the one who took me through my Chemo Teach session. She was great about answering questions, such as she doesn't think I will lose my finger nails which can happen through this whole process, and she went over all the results from my bloodwork (very good numbers). She also talked about the muscle aches which can be a common side effect of Taxol (most likely in the long bones, for example, the femur), and that I should be able to manage it with Tylenol and/or iburpofren, but if not, to let my medical team know so they can figure out something else (other drugs, pain killers, etc). During my exam, she also had a hard time finding the tumor because it has continued to shrink. I really liked that.

More good news - I did not have an allergic reaction to the infusion, and no neuropathy in my fingers or toes, though that could show up in the first 48 hours following infusion. If it does show up, it tends to be cumulative over the next 8 weeks of treatment and the goal is to minimize it, keep it out of the palm and bottom of the feet. As long as I can work buttons or a zipper (fine motor skills) or earrings, then we can proceed as planned and any effects should go away with time.

Bad news - it took 3 sticks to get the IV going. The first one was uncomfortable, it kept stinging which would get old over the 4 hours of the drip, not to mention unnecessary. The second one was like hitting a dry well. (Yes, I still have good veins, easy targets that don't roll, sigh.) The third was the charm but being right next to the spot of my bloodwork draw from earlier in the morning, it started to leak with the tourniquet placement. Ugh. So, four sticks today, all in the left arm - I feel like a pin cushion. Really, really good that I am not squeamish with needles. Dr. Saiya, my visitor today, was surprised I watch the needle(s) go in. I like to see what's going on so there are no surprises, that's all. She also maneuvered my chair so I could see better out the window to see the river (thank you).

Overall, feeling really good yesterday and today going in. Looking forward to a lack of stomach upset the next 8 weeks! Sticking to the plan of taking care of myself as much as possible nonetheless. Only 3 more treatments to go!

Two photos today - one of the final (good) IV hookup from the mirror of the bathroom mid-infusion. The IV pump has a back up battery so I can wheel around. The other is from coaching this afternoon - yes, it is May 27th and I have on a fleece, a down vest, and a puffy-hardshell jacket. Of note is the new hat that came from West Coast friend Elise. Subtle. Yes, that is what it says.

Saturday, May 24, 2014

End of First 1000

After bouncing back somewhat, mostly, by Wednesday, it still feels like a long week. The two days in Worcester definitely took a lot out of me. I can't say it was more than I expected, but how long it took to feel better was the bigger unknown. Being on my feet essentially all day, on back-to-back days without easy access to food and water definitely made things more challenging, but the adrenaline and excitement of being at the end of season championship made it easier to keep going. It wasn't until late Sunday night when I finally had time to relax at home that it really hit me that I was pretty worn out keeping in mind that this weekend is a major energy sapper regardless. Fortunately, the weather was good and there were no major surprises or unexpected events. 

There was also a lot to do this week at work in terms of coaching. Two-a-day practices to select the 4+ to go to the IRA along with end of (academic/fiscal) year meetings - never a dull and rarely a quiet moment. This was the hardest week 2 of a two week cycle, without a doubt. As much as I like to blame chemo for everything (what, bad weather again, must be the chemo), I think much can be chalked up to having more to do this week than some of the other week 2s, more so than the cumulative affect of the treatments.

The biggest news flash is that I'll finally see what long distance travel is like NOT on day 5-6. Heading to a wedding out of town for a former oarsman ('06). A couple of hours in and I'll have to give a thumbs up - so far so good, and by this point I would have been feeling it on the bus. This is very good news. (Update - touchdown and no issues at all!)

Other than that, not much to report. I feel like I am holding steady health- and energy-wise which is also good news. And, I am looking forward to starting the second thousand (making progress) with Taxol on Tuesday (Monday is a holiday even for chemo) although with the same kind of nervousness and low level anxiousness that I had prior to my first infusion. Full report next week.

Sunday, May 18, 2014

Great Day to Row

Today is a great day. My coaching world takes over. And that is what the day is all about. It is the EARC "Eastern" Sprints Regatta, my favorite of the year and the culmination of the Freshman rowing and racing season. Fortunately, the timing of my chemo puts Sunday on the upswing and I will enjoy how I feel this day a lot more than I would have Friday or Saturday.

As great a day as it is, at the same time, it is a nostalgic day and one for reflection mixed in with the joy. After their last day with me, I know I will miss the Freshmen I have come to see as my team, but it is time for them to move on. Even more so, though, today, I feel the loss of my colleague, my mentor, my friend, Harry Parker who was instrumental in allowing me to coach at Harvard  all these years. Race day, today especially, was always a big day for him. He succumbed to Myelodysplastic Syndrome (MDS) last June after coaching through two years of treatment and on some days it was and is incredible how he carried on. He was a strong man and I am not alone in saying how much I miss him.


Thursday, May 15, 2014

First Thousand

Last week was a fairly easy week. I got to row a few times, ran (very short, 2 miles), did some stationary biking), and kept very busy with multiple and oddly timed practices due to my team being in Reading Period (papers due and prep time for the end of classes) and now Exams. Throw into that a few meetings and the fact that our League Championship is this Sunday, May 18, and I really didn't think much about being in treatment - very nice. Still, I had plenty of food dropped off (I can't thank all of you enough, and I have piles of containers labeled ready to be returned), lots of cards in the mail, and social media continues to link me up with friends far and near, and many new to me all together.

purple darkening at nail bed
It's already Day 4 of the fourth cycle and holding steady. Yesterday Monday was the final round of the Adriamycn and Cytoxan, the former providing me with one shot of red pee post treatment and the latter with removing a fair amount of my hair, and joining forces to upset the GI system, especially nauseousness. I also have a bit of darkened nailbeds on my fingers mainly which is another site of more quickly dividing cells, another typical side effect. United, however, they have done remarkable work on continuing to shrink the tumor. Every two weeks when I meet with my doctors, both of them can feel the difference in size and density - it's a great thing to have happen. Because of that response, I know that any rogue cells are being zapped as well. It also means the eventual surgery (lumpectomy) will be less invasive (my words), but I have been assured that cosmetically there will now be no difference. Sigh of relief, haha, from the possessor of the AAs.

The only updates outside of treatment are few. I am planning to shave my head again. There is some stubble just barely growing in in the patchy places after a week and a half and I've found hats are easier with much more hair (so they sit off of my ears) or with less hair where hats can slip on (and off, non-Velcro style). The other is that I did get my period this month, a little delayed but it still kicked in. Biology and treatment response can vary so much from person to person, the range of normal or typical can be quite varied in terms of comfort, fatigue, and how normal body functions go on or don't. Definitely being fit and healthy has to help, yet much is out of my control so I do what I can, as I've said before to try to keep a normal daily routine and to include staying healthy, getting exercise, eating well, washing my hands, sleeping, and staying hydrated.

In two weeks, I will begin a similar course, that is once every 14 days, of Taxol. This should make for much less nausea in terms of side effects, to the point where I won't even be prescribed any of the antimemtics I take now on days 2-5 (and 6 or 7 for me depending on hours on the bus). No self-injected or otherwise shots of Neulasta either. The side expected side effects going forward are during administration:  neuropathy - tingling and numbness in the hands and feet. If it is too much, they lower the dose. I asked what is too much, not wanting to tough out something which could be permanently debilitating. If I start to struggle to work a button into a button hole or other fine motor skill, that is the indicator and they drop the dosage down. I am glad there is a line in the sand! The other issue is a possible allergic reaction to the solvent used with the Taxol. However, being in the hospital would allow for a prompt and swift fix, and it would be nothing to worry about once the diffusion is done each day.

Big photo upload to show the various set ups I have. There are needles, so if you're squeamish in that respect you can finish reading here. I'm considering the red pee toilette bowl photo, but that might be too much and you'll have to take my word for it. (Or click on the link at the end of the post.)

Update - shaved my head, by myself - no nicks, nice and smooth.


Photopalooza - the first is blood work results which I have done each morning before chemo when they also check my vitals - weight, blood pressure, heart rate, temperature, and blood oxygen saturation.

The second is when I get prepped for the saline (hydration) drip which will wind up being used to infuse me with the rest of the drugs and chemicals.

Following some antimetic pills, the and the saline, I get Fosaprepitant, a super antiemetic through the IV. After that, there is there is the Adriamycin in the two big vials (super red). Notice the gloves and saftey garb Nurse S is wearing when she administers this nasty-nasty! Following the Adriamycin push, that goes directly into the IV, not through
the drip, is the last of it all, the Cytoxan which hangs and takes about an hour to drip (no photo).

At the end of the day, it all goes into the large hazmat bin at the end of my station. Good riddance! The real marker of the end of this round is the used Sharps container with my 4 spent Neulasta injections. They served me well, but glad that they are done, too. Gratuitous photo of a soggy Max post-walk this AM in lieu of red pee shot (click here if you really want to see it.)

huge hazmat bin
   


P.S. Race fans, this is the big weekend - May 18, Lake Quinsimamond for the EARC Eastern Sprints!    























Saturday, May 3, 2014

Less hair

Good news - not getting on a bus makes for a much better day 5 and day 6! I still had to make sure to eat frequently and drink (way too much) water to keep my stomach under control, but what a difference. And, I know that by Sunday - tomorrow - I'll have turned the corner to feeling pretty much regular in terms of energy levels (higher) and queasiness (banished).

Back on the hair front, I had Mattison shave my head today. The mange look had really been getting to me, some people even thought my hair was growing back in, definitely not a strong look! All in all, clean shaven is a much better look now that my hair has started to "thin." The super slick feel is pretty cool, too, although really cold to the touch which is probably more due to my perpetually cold fingers (it is still well under 72F to be fair).

smooth
Although Mattison agreed to do it, I'm sure this was not something he really wanted to do. I have asked him more than a few times to just trim my hair straight across when it was longer and was always met with grim protest and bare acquiescence. After offering up one of his nice razors and super fancy shaving cream, we were underway. I tried to sound casual saying that I bet he never expected to be doing this, to which he responded, "don't. say. anything." So I went back to focusing on the experience. It was a pretty loud, gritty, scraping sound across my head.
Max and Linda

As he continued, he did relax a little. He told me he would much rather shave my head than cut my hair - because he knows how to shave, that there is too much that can go wrong with cutting my hair, and that there's nothing that can go wrong with shaving. That's not what I was thinking in terms of what could go wrong, totally the opposite! When getting my hair cut, there is no risk of bleeding and it will always grow back. As the scraping continued, I did appreciate how much experience he has shaving, and I realized I didn't feel about to be nicked or cut. Not for the first time I thought about having to shave your face just about every day. It definitely adds up to more finesse and expertise than leg and underarm shaving, hands down. And, right now, I am thankful for all of his experience. The little clean up strokes at the end reminded me a bit of a cat, just licking a little with its tongue, it felt that careful and gentle. 

If I have to do this again, now or later, I think I'll go to a barber. Then they can ask me if there is any product I'll be needing along with a nice hot towel.

P.S. race fans, we had the weekend off - no racing, only practice today.

Monday, April 28, 2014

First 500

Today is chemo #3. Guest appearances from former 2- partner Rachel, MD, and former teammate Kate, also MD, have been arranged. Both of them work at MGH, and somehow their schedules allowed them to spend some time with me today. Rachel came to my vital signs and doctor check up (and got her own hug from Dr. M), and Kate bookended the day, catching me at of the drip. I also called a friend to take a short walk with me between the blood draw and the infusion. It was nice to have short visits and not have to worry about them, the visitors, in large part because it is a long day - who has time for this is my main concern. I don't, and to say I'd really prefer not to have to set aside this time is an understatement. Of course, I am making the time for this, the treatment, the taking care of myself, eating well, sleeping, exercising, etc. It is what I need to do, especially so I can keep everything else normal - coaching, time with family and friends, walking the dog. And, I'm lucky. I'm just in for part of a day. No taking the treatment home with me or spending two or three days inpatient each round, or even going in more than once every 14 days. If I had every other Monday off for sixteen weeks, there are plenty things I would choose to enjoy besides these 6 hours. I don't have time for cancer.

I consider this point in the treatment as 500m down, 4 weeks in and the 3rd of 8 treatments in the books of a nasty, drawn out 2k. Except, it's not the 2k you look forward to doing. It's not lining up against the competition you've been thinking about and preparing for for months (or longer) at a time. This is more of an, Oh, by the way, attention, go - what, you weren't ready - too bad, that was the start. Though it seems hard to get away from rowing and a rowing analogy, a 2k seems a fairly apt metaphor so far. I am still feeling ok after the first 500, moving strongly into the second 500m (chemo is my move), and getting ready to buckle down for the second 1000. Can't wait for the sprint...

Yale 1F with pink paint
One more bit on rowing, though not insignificant. My friend Igor caught some of the action on the Charles over the weekend (and does so regularly on his own blog, Charles River Blues). He shot and captioned (in part) this photo from last weekend's racing, "Rivalry is rivalry, and chivalry is chivalry. Well done, Yale 1F." Scroll down to see the caption from April 16. I had seen this crew with their painted blades during Friday afternoon's practice and complimented them, but wasn't able to get a photo. Thank you, Igor, for this wonderful image, and excellent bladework to boot! Once again, I find myself blown away by the support coming from my rowing family, this time so vividly from New Haven. Thank you, Y150s! You've outdone yourselves in my book whether you know it or not. 

For me, generating a race plan on the fly is not my usual plan of attack, but given the situation, that is what I will do, it is what I have to do. Plus, I have so many people in my boat that it is impossible to imagine not being able to break this foe. Sit up & Go!




Friday, April 25, 2014

Short run

party pack
Yesterday, I picked up my party pack of pills for the next two treatments. The Neulasta is already in the fridge. Consider me ready for Monday's chemo. More noteworthy, however, was what occurred on my way back from the pharmacy. I caught myself jogging across the street to catch the walk light. Jogging. Almost an easy run. Later, I noticed it wasn't too bad to walk down stairs anymore. Yay! So, this morning I went for a very easy, very short run, just a couple of miles. For the first time since Monday night, the thought of running or seeing someone run didn't make me cringe. Yes, I was a little stiff starting out, for sure, and my feet are still a bit sore, but I certainly felt better when I finished than when I started, always a good sign. It's finally good to be noticeably recovered from the Marathon. Tonight, I feel very good! Still tired, too, but very good.

Hair update. Even though my medical team said it would fall out between 2 and 3 weeks after my first treatment, I pretty much look like I still have the Buddhist monk haircut since the clipper treatment last week, now well into week 4, no complaints here. Today, it definitely started rubbing off in the shower. (Yes, I am still using conditioner after the shampoo.) I now have a small bald spot on the top of my head which I think is only slightly accelerated by wearing a baseball style cap fairly frequently. Of course, it could also be the super volumizing conditioner I used at the hotel last weekend - maybe it was so effective that it acted as a primer for just poofing it all out.

Actually, most of the time, I don't think about not having (much) hair anymore. When looking out, so to speak, it's not like I would really see my hair. Even when it was short, or long and pulled back, at least, I never really noticed it or gave it much thought. It's more like wearing glasses than anything else. I can see through them, but I don't register what I look like when I'm wearing them versus when I'm not wearing them when I have contacts in. To me, it's all the same unless I see myself. It's only when going by a window or looking in the mirror that it registers again (and again) that it is super short. This morning after setting up some equipment outside for tomorrow's race, and then returning inside I thought I should really take my hat off so I don't have hat-head all day. Um, right. Not a problem, no hair, no hat-head. This was also the first time I went to do something hair related that didn't hold up. Again, later today, walking up the stairs with the sun behind me, there was my shadow and I was startled by how my head looked perfectly round. A few times. Right, again. No hair. No matter - it will all fall out, I prepped with the short cut, I will look a little more mangey before long, and then, in the end, it will grow back. I can live with that.

Wednesday, April 23, 2014

Post Marathon

Well, that was unexpected. Or, I should say, so much happened that was unexpected.

To recap, I did run the Marathon, and I did finish. The triple whammy of a 3-day road trip on the bus with my team, 3 weeks of chemo, and the ridiculously warm hot temperatures guaranteed that I got my money's worth on the course. woo. hoo. Anyone I know who did what I refer to as the Commoners' Start (11:25am) was really hurting out there on Monday and beyond. Today, a day and a half later, I finally feel only tired and only sore, not the hangover-like feeling I carried around for about 36 hours. Ugh. Even starting out 40 seconds per mile slower than pace was not enough - I should have added a minute, but who knew just how hot it would get. (I saw a few bank thermometers along the way pegged at 70F and I am sticking to my story.) The last 10k was hard, the final 5k even harder (run-walk, just keep moving). Not much, though, could ever trump the sheer emotion of the final 1/2 mile to the line with so many people yelling and cheering and saying thank you, all the while I am thinking over and over again, thank you for trusting, thank you for being here, thank you for cheering, and no don't thank me I am thanking you! (It took a long time. I had a lot of time to think.) I am still over the moon for being so lucky able to run (thank you, Dr. M), and I know that the exhilaration and reality of what I accomplished will continue to kick in even more as the weariness fades.

Unexpected
  • most of my team showing up wearing their infamous pink socks to cheer me onto the Finish Line just before the turn onto Boylston Street. They had a sentry outpost who went running, appropriately enough, Paul Revere style to warn the troops that I was in sight. Best sign (that I saw, I missed some) was theirs, "Sit up & Go!" So, I did.
  • the woman who ran behind me with a few hundred meters to go getting the crowd to cheer for me (I could see her shadow). Thank you, wherever you are! xo
  • my sister contacting a writer @realOBF for boston.com and getting me written up in a Marathon blog piece which seems to have gone viral in the rowing community. Good press for my employer, haha.
  • the continued and extended outpouring of care and good wishes from friends and family. #WeAreAllStrong #Survivors
My facebook feed is beeping at me regularly, my inbox is not over the limit (close, but that's my own fault most of the time anyway), and twitter and this blog have seen some serious action. It's all good.

Looking ahead, one more weekend of regular season racing on Saturday, home, thank goodness. Another bus ride might put me over the top. Chemo on Monday, but let's not get too ahead of ourselves. One stroke at a time, one day at a time.