Tag: survivor

Monday September 25 – Oncologist

Today was the first oncologist appointment (getting to know you, getting to know all about you….)

  1. My Care coordinator picked a good match.  We both like her.
  2. Her assessment of the treatment plan matched the consulting Oncologist’s recommendations and reasons why
  3. Ready, set, here we go…. (First star to the right and straight on till morning!)

My Oncologist’s name is Swati Sikaria. She is a Hematology and Medical Oncology Specialist. She is taking a very hands-on approach to my treatment. Not only will I be going to the same office for all my treatments, but she has me coming back in for a physical checkup every few weeks in between… (That is a whole lot of driving to the other side of the hill.)

She is placing me in early Stage IIA for my cancer, the main reason for Stage II – size.

She is starting me on chemo first; then we move to lumpectomy (or bye-bye babies if genetic test results come back with bad news).  We will go from there for the next steps.

Chemo cocktails (Dr. Sikaria already confirmed; these are not the fun 5 o’clock cocktails) will be done in two parts.

Part 1:

Adriamycin &  Cyclophosphamide every 2 weeks for 4 cycles (total of 8 weeks)

She said this will most likely kick my ass for about 4 to 5 days, then I will start to feel better.  There is the possibility of working part-time during this cycle, but in speaking with the patient advocate who handles all the disability stuff, variable leave sounded complicated.  My company is willing to work with me on this.  Tomorrow, we will sit down and put together a tentative plan and go from there once this actually starts, and we see how I react.

Part 2:

Taxol & Carboplatin (which is a new drug in the chemo arsenal, and she is willing to fight the HMO if they don’t approve it.  It is tough on triple negative cancers like mine.)  This will be administered weekly for 12 weeks.  Adding the Carboplatin will kick my butt on day 1 and maybe day 2, but I will recover quickly, and I can work from home, but I cannot go into the office when I do this.

This all starts Tuesday, 10/10, at 9am sharp.

But wait, there’s more… (and you don’t even have to cover shipping and handling charges)

  • We get to have Chemo Training….  (they teach me the best way to puke and Robert the best way to hold the bucket?)  That is this Friday at 1 pm.
  • I am being scheduled for a port—yeah, another battle scar! (And fewer needle holes!)
  • I am being scheduled for Genetic Testing (as hinted above) – it has to be approved by the Insurance company; if that fails, we will be doing this anyway and paying for it out of our own pocket.  It’s important.  It will be a full genetic markup, not just the breast cancer genes.
  • I will be given a self-injectable of Nulasta to take after every chemo session to keep me healthy during all these designer drugs I’ll be doing meant to kill me, oh, wait, I mean the cancer.
  • And the bad news – genetic testing results take about three weeks…  If I come back positive for any cancer indicators, all three kids will then need to be tested as well.

That is all the new news for today.  You can all go back to your regularly scheduled programming.

Life is preparing for battle

Friday, September 22 – Cancer Support Community

We go to the Cancer Support Community, as Evelyn directed, as Robert insisted.  He has to go with me.  I cannot do this alone.  We meet with several interns there who provide us with a brief tour before we are taken to a room to learn about the center, how they are funded, what services they provide, and for them to learn about us.  I feel small.  I feel insignificant.  I feel lost.  I can do this.  I feel lost…

There are three of us with cancer: a gentleman with bladder cancer and only one kidney, and his wife, who I can tell is desperate to have something to cling to.  A young woman who almost died of Leukemia is waiting for a bone marrow match.  And me, the one with the aggressive, triple-negative breast cancer.

There is another person in our “Welcome” group; her brother is dying, and she is distraught.  Her parents died when she was 7; I gather her brother raised her.  And my husband.  My black and white, sarcastic, dry-witted, loving husband.  The man who thought at a way too early age that he would not live past 50 had a bucket list by age 10 and started working on it by 20.  This deep-hearted, compassionate man who hates drama hates dramatic, over-emotional upheavals.  Who thinks he cannot benefit from being in a group all sitting around feeling sorry for themselves rather than taking some sort of positive action?  I sit next to this man and realize he needs this as much as I do.  We must get through this together and with as much help as possible.

As we’re all being handed the paperwork necessary to fill out to continue with placement in a support group, I tell him if I have to join a support group, he does as well.  There are three support groups offered, three nights a week. One for spouses/companions, one for newly diagnosed breast cancer patients, and one for other cancer patients.  We pick Tuesday nights.  We will start next Tuesday.  We are shown more of the facility.  I am trying to remain calm, to keep the fear-laced anxiety contained.  It bubbles up and threatens to consume me.  With all my willpower, I push it back yet again.  I can do this.  I have so many in my life I can call on for support.  Oh my God, how is this happening to me….

I have to talk to my family about this.  They have been so patient about this.  I still have not processed this, this lump, this process; why am I struggling so much?  I am still so lost, small, and frightened, and The Lump is so big.  How did I miss it for so long?  What is WRONG with me?  I can do this.  I can beat this; who cares if I have no boobs?  Who cares if I have fake ones?  Will I care?  I have fucking CANCER!  Breathe…  I feel like I’m constantly on the verge of tears.

We finish up at the Cancer Support Community, and because it’s National Ice Cream Cone Day, stop for an Ice Cream Cone.  I go back to work.  I should be exhausted.  Sleep is still not coming to me.   Will I still be able to be attractive when this is over?

My husband purchased Pink Die-Cut tape-backed letters and stuck them on the bathroom mirror: Treatable, Curable, Survivable, Temporary. I love him.

Life is big and scary.

Wednesday, September 20 – Symposium…

I didn’t really sleep.  I fell asleep last night, but I was awake again at 2 am.  I fell back to sleep after 5 am, and I woke up before 6 am.  This is now my thing.  I get ready, I have the Symposium today.  How do I act normal?  My world is upside down.  How do I do this?  My dragon is active, squeezing my heart here, punching my lungs there, kick to the gut, a whoosh through my head, remember to breathe girl, breathe.

I leave for the Symposium like it’s any other day.  A normal day.   You can do this; it’s just another day of the week.  You were looking forward to this.  You can do this.  I arrive at the location where the symposium is being held.  Lots of people I know and recognize, people I don’t know.  I should sit near an end where I can excuse myself if necessary.   Evelyn will be calling with MRI and HER2 results.  She may be able to get me in for Genetic Testing…

Act normal, smile, fake it.  Ten minutes before the opening remarks, my phone rings.  Evelyn.   MRI is clean.  No other lesions or lymph node involvement were spotted.  It’s a relief.  Exhale some of that pent-up anxiety.  HER2 is negative as well.  We’re confirming this is a triple-negative cancer.  And that little bit of anxiety just released is back.  Triple Negative sounds bad.  My husband begged me not to Google anything about cancer.  I will not go down that rabbit hole.

I can do this today.  Immerse myself in the day.  I signed up for this so I could learn more about this system.  I can do this.  I run into Rita.  I worked for her a long time ago.  During a break, it comes out.  I tell her I was just diagnosed yesterday.  She had breast cancer.  Different.  Slow growing, lumpectomy, radiation.  She will help me.  It helps knowing I have someone on my side.  I have her number.  I will call her.  I make it through the day.  I run into a few others.  I told an old colleague who was there as well.  I leave as soon as I feel it is appropriate.

Home.  I’m trying to be normal about this.  My world is no longer normal.  I email the family with the news of the MRI.  Small steps.  We can do this.  We.  We.  Me…  Husband insisted I had to join a support group.  Arrangements are made to be at the Friday morning welcome meeting so we can start that immediately as well.  How do I not have questions?  I do have questions about chemo; I know the basics.  How sick is this really going to make me?  Google that.  I can Google that.  It’s not answering my questions.  Maybe I need to be more specific on my cancer so I can get specific answers on the chemo.  Google: Triple Negative Cancer Chemo.  First sentence up: Triple Negative cancers have the lowest 5-year survival rate…  OMG, close, close, close!  Google is not my friend!  Stop trying to figure out what will happen with chemo.  My anxiety now contains some tendrils of fear, orange, and red, mixed in with the gray.  It is a hard ball in the center of the anxiety, making it heavy and nauseous.   I should catch up on work.  Work takes me away, do not think about that C word.  Don’t think about Triple Negative.  Don’t think about any of it.  Ignore the ball in my gut. 

What if I must have a mastectomy?  Do I want reconstruction?  Do I have to know this now?  What if I need a bilateral mastectomy?  Will they feel fake?  Will they feel at all?  My husband says he will love me no matter what.  He doesn’t love me for my boobs.  He doesn’t care if I have them or not.  But I think he might.  Do I want new boobs if I must remove my real ones?   One, maybe the other, is trying to kill me.  Why?  I should eat.  I can’t eat.  Maybe I’ll sleep tonight.  Do I want new boobs?  Do I want a prophylactic bilateral mastectomy?  I don’t know what I want…  my heart aches.  Will I still be me?  I know I am not my boobs, but I just don’t know how I feel about losing them or replacing them…

Life is broken.