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 The peach fuzzy hair I shaved off has been replaced by about 3mm of normal looking, dark hair on my scalp.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.