Chemo Done, We Are On To Radiation

I will use the power of positive thinking and I designate Tuesday, August 15th as my last trip into NYC for labs, my last visit with my oncologist (well not really the last but the last for her to prescribe chemo) and my last trip to the “treatment suites” for chemotherapy.  My lab results came back good — a part of me will miss this two-week status check.  I’d really like to have a two-week update to check on my system as it works its way back to normal, without all the drugs.  My main questions were answered — I should allow about a month and then slowly add back foods I’ve stayed away from like rare meats, raw seafood and ease up a bit about my hyper-sensitivity to potential germs.  Although I tend to forget not to hug or kiss people when I see them.  She suggested that I give myself a month and then proceed slowly and cautiously.  I asked about anything that I would take after chemo and radiation is done, it’s something to discuss with my oncologist at my next appointment on Tuesday, September 26.  There is a drug that is in clinical trials and already FDA approved for another type of cancer.  Seems there are promising results from this drug for women who are triple negative / androgen positive, which I am.  So we will discuss enzalutamide again at that visit.  Ugggh, part of me wants this and part of me doesn’t — I’m that person who’d rather not even take an aspirin.  Just another reminder that this is all part of my new normal.  We will cross that bridge when I get there.  My husband Bryan asked the “elephant in the room” question — what’s my prognosis?  The answer — we will be watching you closely for the next two to three years.  Not sure what else I can say about that for the moment.  There’s a lot of living to be done in these next two to three or twenty or thirty years.  That’s all I have.

Sunday Funday with my family.

On to the treatment suites and my last chemo.  After the last experience I was very vocal about my vein issues and the nurse was very empathetic.  She took her time but still the results were that the first two veins collapsed.  She spent a lot of time looking for another vein but finally left and returned with who I assume is the resident expert.  She was a bit more brusque and said that there is no reason why I couldn’t use my right arm and that latest research says it’s fine in spite of the lymph node involvement.  Well, I’d rather not but I didn’t have to go down that road since she struck gold with a good vein in my left arm and off we go.  Three plus hours passed quicker than I thought they would. I definitely missed the steroids in a couple of days, though.  Last chemo, last steroids, last Neulasta injection.  Sorry, I won’t miss any of you!

I had a good ride on Wednesday but on Thursday I was totally and competely exhausted.  I did ride but all I could think of the entire ride was I’m so tired that I don’t even want to put my bike back in my car.  Ran knew something was wrong, I wasn’t even talking.  When I said how I felt about taking my bike home he promptly put it in his garage and said it will be here for when we ride tomorrow.  Which we did.  I spoke to his wife about the ride a few days later.  She asked why I didn’t stop.  I’m not quite sure except I’ve never stopped, or called for a ride home, or dnf’ed a race.  And I don’t plan on doing it any time in the forseeable future either.  My concession that day was to come home, take a shower and take a nap on the front porch.  And then take a nap on the couch.  And then tell Bryan I was just too tired to cook dinner and proceeded to go to bed!  So, I’ll designate Thursday, August 17th as my worst post chemo day and move on.  But since my worst day involved feeling crappy on a 17-1/2 mile ride and averaging just under 15 mph, I will remain grateful for my first world problems.  All my workouts are posted on my Strava and I look forward to the day I look back and see how far I’ve come from today.

Radiation next.  My feeling about it — let’s get it started and finished as soon as possible.  With that as my motivation we scheduled “setup” for Monday, August 21st and my first appointment on August 28.  Well, setup went quickly in spite of the first unpleasant staff person I’ve come across as MSK.  I’m just going to let that go in spite of all the mis-information she gave me.  Since I don’t settle for answers that don’t make sense I decided to follow up with my doctors and found out the correct answers.  Another space age room with space age technology, a few pictures and I was out of there.  Those two weeks went by quickly between that last chemo treatment and what I thought was going to be my first radiation treatment.  Seems someone messed up and I was only scheduled for a “practice” and not an actual treatment.  Kind of annoying but it was nice to find out that my actual radiation appointment would be a less than 5 minutes and was not claustrophia-inducing;.  The downside is that it extends my schedule for one more day and ends up with treatment #20 on September 26.

This will all cut down on my bike time but I had some amazing rides over the last few weeks with friends and training partners Ran, Martin and Gal.  Ran is probably my training partner sould mate.  When I told him I was going to have to cancel our ride this past Sunday his response was no, let’s just start earlier.  And he’s the one who drives into NYC every day for a high stress business and also has a family!  We managed a 140 mile week followed by a 150 mile week, I’m good with that under any circumstances.

So now it’s time for a swim / run focus.  My current plan — get up early and swim, head to Holmdel for my radiation and then head to Holmdel Park for whatever I can manage.  The Holmdel Park cross country course and the roads around the Park have always been among one of my most favorite places to run so I figured I’ll take this as a sign.  I’m slow but it’s okay — I felt a few glimpses of a runner today, even if it was on the downhills!  And who really cares about all those high school runners who are zipping around the park???  No matter how tough it is to look at the pace I’m swimming and biking and running in black and white, when I’m in that moment it feels good.  And I know that to many people it’s a good pace.  So once again, it’s my first world problems.

There are moments that bring me to tears.  Like when I opened a beautiful addressed envelope from my niece, Heather — a phenomenally talented artist.  The ribbon is just one of her drawings. But what touched me even more is her card.  I’m reminded of one of my favorite Avett Brother songs — “if you’re loved by someone you’re never rejected, decide what to be and go be it . . . . . ”

It was especially great to catch up with another of my best friends, it’s been too long Bryan but it’s also like we saw each other yesterday!  Great fun and let’s paddle soon . . . . . SEA Paddle again next year?


Radiation #2 tomorrow.

And I Know Someday I’ll Walk Out Of Here Again

Chemo treatment 7 didn't start out well. When the first vein collapsed I tried to keep a good attitude, after all I've been very lucky so far. When the second and then the third vein they tried collapsed I wasn't quite so calm anymore. And then when a nurse suggested we could try my right arm because "you only had one lymph node removed" I put my foot down and said absolutely not! All the instructions and warnings I have been given have been to not use my right arm for blood pressure, for blood draws, etc. because of the risk of lymphodema. When they described it as swelling of the arm I wasn't too worried, until they told me it's permanent. "Only" one or not, I'm taking no chances. Fortunately a new nurse came in and found an untapped "good" vein along the back of my arm and on the fourth stab they were successful. And so began the third treatment — Benadryl, Dexamethasone and Paclitaxel (Taxol or "poison"). Since I didn't stop breathing during the first two rounds of this drug the nurse no longer waits in my room with an oxygen tank.

Other side effects that have happened over the last two weeks — my eyebrows are pretty much gone, along with the majority of my lower eyelashes. My upper eyelashes have thinned but a good amount of them are still there, although they also seem to be falling out. I caught sight of myself in the mirror the other day and thought wow, you look like one of those people in the commercials that pull on your heart strings. Oh wait, sometimes I forget . . . . I am one of "those" people.
Which brings me to something else: complete strangers are really, really nice to me. No one cuts me off on a line. Complete strangers pay for my coffee at Starbucks. Even people on the streets of NYC look me in the eye and smile and give me an encouraging word. It's going to suck when my hair grows back and people return to their usual asshole behavior. All of which has really made me think about how we all judge people by their appearance. If I hadn't lost my hair no one would have any idea what I'm going through. So what's the lesson here for me? Time to remember that none of us know what's going on with the next person, they may have a way tougher road in front of them than any of us realize.

The neuropathy and the tests I had this past week are an interesting development. The tests I had with the neurologist this past week were interesting. Dr. Tzatha described my symptoms as "mild" but I was very unsettled to learn just how much feeling I don't have in my feet or in my hands. She also said that based on my lack of proprioception she was surprised that when I walked with my eyes closed that I didn't stumble or fall. She attributed that to my fitness, so once again my lifestyle choice has made a difference in my quality of life.
So much to look forward to this week — last chemo, last labs, last neulasta injection. And time to start the road back. And look forward to my trip to Kona with my friends Amy. Who kicked ass today at USAT Nationals!