Some Tough Days

So, as I write this down I’m reminded that my problems are still “first world” problems.  But, they are my issues and on Monday I was close to tears quite a few times.  I woke up and got dressed to go the pool to meet my friend to swim.  He’s training for IRONMAN Lake Placid.  I had thought we’d be training together but unfortunately, that isn’t happening.  I was happy to be back in the pool as of April 18 and not much slower than my previous pace.  Working out has made me feel good physically and mentally.  And it gives me some moments of normalcy in the midst of all this madness.  When I was changing I noticed blood on my pajamas under the arm.  It looked like it came from the incision where the lymph node had been removed.  I kind of blocked it out and continued to the pool.  I saw a nurse friend in the locker room, she didn’t know what was going on so I filled her in.  I told her what I saw this morning and asked if she’d take a look.  She said, “I’m not your surgeon’s nurse but there is a small hole there, I wouldn’t go swimming if I was you.”  So, waist deep only in the hot tub and then the steam room for a bit while I watched Ben swim.    I had an appointment today with the radiation oncologists so I asked her about it and also sent a picture to my surgeon’s office.  Nothing serious but stay out of the pool for 3 to 5 days.   It’s now Wednesday — I know it’s not the end of the world but, I still feel like crying.  Last week was the start of getting a plan in place for my continued treatment.  One thing that has become very evident is an entirely new language I’ve learned since this all started at the beginning of March.  Who knew how many different types of breast cancer there are, how many different stages and grades, or what triple negative means?  Learned another new one — adjuvant.  This was thrown out there in connection investigating whether I should have chemotherapy administered into a vein or by a port.  I could happily have spent the rest of my life never knowing what any of this meant.

So, let’s go back to last week and my appointment with my chemotherapy oncologist.  Dr. Tiffany Traina is a doctor who came highly recommended from two friends and everything I read about her impressed me.  In person, she was just as impressive.  One thing I’ve been struck by about everyone I’ve dealt with at Sloan, especially the doctors, is that they seem to be so genuinely kind.  To make a very long story short, she explained the treatment plan to me which came down to the following:  A total of 8 rounds of chemotherapy (for those of you who know about this stuff — the regimen consists of “ACT”).  The first four treatments will be the “AC” portion and the last four treatments are the “T” portion.  These treatments will happen every other week, followed by a Neulasta shot the day after each chemo treatment.  The Neulasta will be sent to me at home and I will inject myself.  Fortunately, we have specific chemotherapy and injectible prescription coverage since Bryan is retired FDNY.  Two injections cost $11,000!  I need to meet my deductible of $100 and then our coverage for these types of drugs is unlimited.  Treatment #1, 3, 5 and 7 are scheduled locally at the MSK facility in Middletown and about 20 minutes from my house.  Treatment #2, 4, 6 and 8 will be at MSK in NYC.  This will give Dr. Traina a chance to discuss how I react to the first treatment and ease the stress and expense of commuting into NYC somewhat without compromising my treatment.  The seriousness of all this creeps in just a bit more each day.  After our appointment, I was sent to the lab for some blood work.  They took 8 tubes of blood for testing.  This will mean they can monitor changes in my blood as a result of my chemotherapy.  I was scheduled for more appointments on Tuesday (yesterday):  I got an echocardiogram so they can monitor potential damage to my heart and lungs as a result of the chemotherapy.  As this was being discussed I remembered the stress test I had no long ago — Dr. Shah kept saying my heart was “perfect” and an example he would use for other patients of the advantages of exercise to keep your heart healthy and young.  I know starting from where I am at is good but do I really have to risk heart damage to get healthy?  I’m not even going to discuss all the other possible side effects.  Each drug I will be getting comes along with several pages of information that spell out all the risks, side effects and more.  This is a rhetorical question, of course.   I do understand that I do have to do this.  A healthy heart won’t do me much good if I have cancer.

The first four treatments are on the calendar.  Tuesday, May 9th is the beginning of a whole new type of training plan.  If all goes as planned treatment # 8 will be on August 15th.  What do I have to do?  Make sure I stay as healthy as possible throughout all this so there is no need to change any of these appointments.   I know that I am mentally and physically strong and healthy enough for this, I just hope that I am lucky enough to keep this train on the tracks.

So, as if all of this wasn’t enough I met with my radiation oncologist on May 1st.  Dr. Beryl McCormick also brings with her amazing knowledge and experience in her field.  I felt good when I saw her biography information included mention that her newest research will explore whether breast radiation after surgery has an impact on patients’ tolerance for exercise.  Well, if the chemotherapy information wasn’t frightening enough this took it all to another level.  Potential damage to my heart, my lungs, the muscles surrounding where the radiation is targeted (my entire right breast first, then the specific area where the tumor was removed) is associated with these treatments.  The protocol here will be 20 treatments over a 4 week period.  Every day, Monday thru Friday.  This will start about 4 weeks after chemotherapy ends, so according to the calendar, that would mean starting the week of September 11th.  The irony of that is not lost on me.

I am blessed to have so much emotional support.  Flowers, cards, thoughtful gifts and more arrive on an almost daily basis.  Some of my friends surprised me with these bracelets.  They have sent out many to friends all over the world and they’ve also given me a bunch to share.  If you’d
like one please just let me know.  I really do feel an amazing sense of comfort and strength and love each time someone posts a picture or shares with me in person.

There is lots more to add — I spent an amazing day at Mary’s Place by the Sea last week and have another scheduled for tomorrow.  All I can say at the moment is if you or any other woman you know has or had cancer, check out the resources available.  I’ll share more about them another time.

I also met with my chemotherapy nurse yesterday.  But I just can’t share any more of this information at the moment.  I have a list of stuff I need to get — over the counter medications, new toothbrushes, and some other dental products, etc. for possible side effects.  Also birthday cards and the like.  Somehow or other “normal” life continues also.