Month: November 2017

I saw a picture last night and it really spoke to me, so I saved it. Not really for any particular reason, maybe just to reinforce to myself that taking a step back this past 8 months was what I needed to do both physically and mentally.  

Yesterday was a follow up with Dr. McCormick, my radiation oncologist. All in all, she is very pleased with my response to the treatments. I mentioned that I’ve been swimming a lot and how I was developing a bit of an ache in my right shoulder area, but not a spot I’ve had trouble with before. She looked at my chart and said that it was not a surprise. – six weeks out from my last radiation treatment is when the chest muscles and tissues are most inflamed, and since everything involved in my treatments wraps around and is connected to the muscles I’m using for swimming it made perfect sense. Nice to know the cause!

Today was my follow up visit with Dr. Traina, my chemotherapy oncologist. I will see her once a month while I’m on Enzalutamide.  It’s funny how the little things sometimes upset me most.  When I put my gloves on I took a look at my finger, one of the four nails that have already fallen off.   And it’s ugly.  And it really bothered me that I have these constant reminders that will take months to go away.  It takes 6 months +/- for a new nail to grow back.   It’s one of the facts that I have to deal with, and sometimes I just I don’t want to. I want all these cosmetic issues to go away, because they are all reminders of something I’d like to pack up and put away.  And if I’m being honest, like the day my hair fell out, there was something about looking at my hand that actually brought me to tears. The new hair on my head is mostly a great silvery grey mixed with a bit of dark hair.   I’m comfortable with the close-cropped style I have at the moment.  I love my darker and fuller eyebrows and eyelashes that have grown back.  I’m not so comfortable with the excess facial hair — it’s all longer than before and a lot of it is dark!

I get to the lab at Sloan, my first stop to have blood drawn.  It’s crowded, and I notice an older couple with an infant in a carriage.  I just assumed one of them is the patient.   A few minutes later a young woman walks out from the lab area, she is obviously the patient.  And the mother of the infant.  And I’m crying about facial hair and ugly fingers?

My name is called and there you go – I’m next up for the blood draw. I chat with the guy who’s taking my blood and mention the mom with the infant and how it gave me a reality check on my complaints over my cosmetic issues. And he says yes, but you have cancer. And I say but how do you deal with this everyday. And he says I go home and sometimes I just need to not talk to anyone. I totally get it, and show him the quote I saved last night. He says that makes my day and can you please send it to me. And that I just made his day. Well, that just made my day.

A lot of good stuff has happened since my last update. Tuesday was 7 months post surgery.  Twelve weeks post chemo.  6 weeks post radiation.  But who’s counting?  My surgical follow-up appointment showed that everything looks good, I’m clear on that front until April 2018. I made sure to have the follow-up mammography and sonogram scheduled now.

 It’s five years until I’m considered “in remission” so that’s the best news I can hope for in that department.  I don’t want to rush the next five years but then again . . .

I’m almost three weeks into a new journey — I agreed to participate in a clinical trial for a drug that shows promise in preventing the return of cancer in women with AR(+) triple negative breast cancer, and that would be me.

Enzalutamide has already been FDA approved for use by men with metastatic prostate cancer, and studies in women with metastatic AR(+) triple negative breast cancer have been very positive so they are now expanding to women with cancer that is not metastatic. Yet.  And I feel I have to keep that option open since there are no guarantees and I don’t want to take anything for granted. No, I’m not being negative — quite the opposite actually. But I also need to be realistic and accept as best I can that anything is possible in the future. And that is why I’ve agreed to the study — I want to feel that I’ve done everything possible to prevent this from coming back. And if it does come back — well . . . I don’t want any regrets about roads not taken.  I’ve felt no effects from the drug, yet.  Fingers crossed for the days ahead.  And I’m still on drugs, for at least a year.  From the woman who doesn’t even like to take an aspirin.  But, I’m grateful for the monthly in-depth follow-up appointments that are part of the study.  I’m still scared of what the future holds, I don’t dwell on it and it doesn’t stop me.  It actually motivates me to make the best use of every moment that I have.  There is an IRONMAN finish line in my future in 2018, I have not doubt about that.

An excerpt I read recently online:

“I love it,” she stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.

“Mrs. Jones, you haven’t seen the room …. just wait.”

“That doesn’t have anything to do with it,” she replied. “Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged, it’s how I arrange my mind. I already decided to love it. It’s a decision I make every morning when I wake up. I have a choice;

“I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do. Each day is a gift, and as long as my eyes open I’ll focus on the new day and all the happy memories I’ve stored away, just for this time in my life.”

She went on to explain, “Old age is like a bank account, you withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories. Thank you for your part in filling my Memory bank. I am still depositing.”

And with a smile, she said: “Remember the five simple rules to be happy:

1. Free your heart from hatred.

2. Free your mind from worries.

3. Live simply.

4. Give more.

5. Expect less, & enjoy every moment.”