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 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. 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!