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).

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.