Crossing Cancer (Chapter 4)

IMG_5352The day after I got the diagnosis, a friend came over to tell me what to expect with chemo.  He mentioned that he researched and asked questions until he was sure he was with the right doctors.  Then, he dove into their recommended care with full confidence—explaining that there’s no way to learn rocket science in weeks.  I have done the same with my care.  Knowing that I’m with the right doctors gave me one less thing to worry about.

It’s October and breast cancer awareness is everywhere I turn.  Did you happen to see the People Magazine recently with a bald and beautiful Joan Lundon on the cover? Here’s a great example of how much I trust my doctor.  Joan has exactly the same type of breast cancer as I do, “a rare and aggressive form!”  The article states that she did so well with her first 12 weeks of chemo that she didn’t need to continue with her second treatment– “the red death”–which I have to assume is Adriamycn/ Cyclophosphamide.  I’ll take the AC beginning around Christmas time for 8 weeks.  I asked Dr. Moasser if he could envision a scenario where I’d not have to undergo all 20 weeks of chemo.  He looked at me quizzically as he shook his head no.

“Did you see Joan Lundon on People’s cover this…?” I trailed off, feeling infantile.  “Of course you haven’t,” I corrected.  I pictured him on the weekends, sipping coffee, spending precious free time reviewing his next NIH grant.  Thank goodness.  When I explained the background behind my question he replied: “AC is the most effective chemotherapy for all types of cancer- your lump is already decreasing in size thanks to Taxol and CarboPlatin, but that’s the easy part.  There are invisible cancer cells that we can’t see on the PET CT scan that have escaped into your body that we’re going after with the AC.”  Right.  That’s why he’s wearing a white coat and I’m not.

Trusting your doctors allows you to focus on other things—and what’s shocking is how big the remaining milestones are.  I’ve written about this before, the whole appearance thing is larger than I thought.  It affects not only you, but your family and most notably, your children.  It’s a giant walking billboard advertising that things are not right in your own home.  I did a couple of things that I’d recommend to anyone going through this: the first is chopping my hair into a short pixie cut and sending my locks to “halo hats” to make a semi-wig, so that my old hair could peek out beneath hats and scarves.  It took a little over three weeks to arrive–after my pixie cut was buzzed off.  Now that short haircut is distant memory that I can look forward to once my hair grows back in about 8 months time.  Small consolation: for now I’ve got a semi-wig with my own hair.

Buzzing your head.  There is no glossing over this one. Last week, I woke up and lazily ran my hands through my hair as we all do in the morning.  This time my nerves stood up on end at what I saw: my fingers were covered in a netting of my own hair. I panicked, but was late for my daughter’s soccer game so I rushed on.

Watching her game, I was distracted by a nagging feeling of “not right”- like a bad e-mail that haunts you all day.  But worse.  I didn’t want to see that again, but I really hadn’t thought through how—or the moment—I’d go bald. Let’s face it: no woman should ever have to.

I assumed I’d go to a barber shop (because where else do you shear your hair off?), yet couldn’t imagine sharing such an intimate deflowering with someone I didn’t know.  After talking to Mauricio and some friends, it became apparent: let’s take this into our own hands.  Amanda, Evie and Maja showed up in wigs and brought a shaver and a super-hero cape for the client.  Together with Mauricio, my daughters, my mother, Right Said Fred, killer heels and some champagne to witness, we shaved my head. IMG_5357

What I loved about this experience was how my daughters were there—and it morphed into a strange abstract sort of mirth.  My youngest saw my friends in wigs and promptly put on her Halloween costume– a Tootsie Roll.  During the buzzing, she territorially clamped onto my wrist, wincing.  But once she saw that I was joking with my friends, she relaxed.  When I finally opened my eyes and saw myself in the mirror I exclaimed: “Well, I’ve been wearing swim caps for half of my life– this isn’t too different.”  Both my daughters surveyed the new exposed look, scanned my face for it’s true reaction and pronounced: “I kinda like it.”  It was over.

You might see a theme in these post about support.  Quite simply put, I’ve gotten a tremendous amount of strength from others.  A friend got me into the right doctor, another a short haircut. Friends and family have flown out from afar, brought bright flowers, heavenly meals and green juices.  They’ve sent cards with lovely words inscribed inside and libraries of books that mean something to them.  They send boxes of hat wear (and photos of themselves wearing them) from Barcelona… and throw scarf-tying parties just down the road. They e-mail strength-building quotes and drop over snuggly blankets. They sit through chemo treatments (no way around this one– it’s friggin’ depressing).  They take me to acupuncture and sign me up for yoga.  They drag me out to walk 5 miles when I don’t feel up to it. They’ve dedicated athletic challenges (so awesome since I live vicariously) and art shows. I’d go on because there’s more, but I fear I’m sounding long-winded (and blogs should be short).

But one last thing–worth seeing… some of my colleagues from Worldreader made this hilarious video.

Some people have said that when you go through cancer, you want and need to retreat from the normal, vibrant world.  And to a large degree, you have to.  However, every time I hear that, I’m thrown back to a moment when Amanda, Mauricio and I were walking down the street, discussing doctors and chemotherapy before we were sure of my medical care, back when my long ponytail swung right to left with each un-tired stride of my legs.  Amanda remarked: “pretty soon things are going to cleave into two and Susan will be the only one experiencing that.” I actually stopped in my tracks at her observation.  What actually frightens me more than cancer, feeling depressed, looking weird, suffering side-effects–anything, really, (even mortality) is doing this alone. As I write this, I realize something: no one wants cancer get the upper-hand.   And the support is a giant, unwavering buoy.  THANK  YOU!

 

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PS- Update:  4 chemo’s down. Last week, they skipped a session because my blood counts were too low.  You might think that I’d be kinda excited about skipping a week of feeling badly, but no.  I’ve gotta get through each and every session, so missing a week is prolonging it.  I’ve injected 4 shots of Neupogen into my belly in the last 6 days- all to get white cell counts up.  I’m feeling okay- slight nausea, pronounced headaches, and overall fatigue.  The port has moved from feeling like a dagger to a sharp rock (like in your shoe).  The zits have kinda subsided, but I’m told to be wary– they’ll be back.  Fine.  I’ve not lost feeling in my fingers or toes yet, but there is some weird rash that evidently means that’s around the corner and some laser-like shots are resonating from the beginning of my fingers to the endings.  Damn.  It’s still early and the road is long, but one day at a time.  It’s do-able.

Related Articles:
Crossing Cancer (Chapter 1)
Crossing Cancer (Chapter 2)
Crossing Cancer (Chapter 3)
Crossing Cancer (Chapter 4)
Crossing Cancer (Chapter 5)
Crossing Cancer (Chapter 6)
Crossing Cancer (Chapter 7)
Crossing Cancer (Chapter 8)
Crossing Cancer (Chapter 9)



Categories: cancer

17 replies

  1. Wow. You are so lucky to have such amazing friends. Amanda is a gift. Xoxoxo

  2. Every chapter is a very high impact text to read. One thing is sure your heart and your beauty are not related to the length of your hear!I am sure your smile and your eyes shine even more like that! For the time being your are a kind of warrior!

  3. “Well, I’ve been wearing swim caps for half of my life– this isn’t too different.” You are amazing my friend. I applaud you for your proactive approach and your honesty with everyone you love so much. XXOO!!

  4. Hi Susan

    You are incredibly inspiring.
    Keep your inner smile. It will boost your immune system.
    All the best in this very intense journey.

    Big hugs from AZ
    Shirley, Daniella, Johann and Richard

  5. Hi Susan,
    Fyi my son Sebastian 20 years ago at age seventeen was diagnosed with a rare and aggresive lymphona . The first case in The MD Anderson. His treatment was very similar as yours. A trial protocol which saved his life. He is now happily married and the father of four… Much love, Cecilia

  6. I just got caught up on your blog. So many different emotions to feel after reading it. Thanks for sharing so openly, hopefully it allows you to release and your friends to absorb some of the pain. No one would ever choose to have this happen, but the choice you do have is how to handle it when it does. I am so in awe of your strength and your humor, you are facing cancer head on and though it is the hardest thing you have ever done, you are getting through it. You are truly amazing and I have no doubt you are going to kick cancer’s butt and you have lots of people around you sending you positive energy and love.

    XXOO
    Kim Winterhalter

  7. I don’t think I could be more inspired or awed by your courage. Sending you all my love and thoughts and prayers and mojo…you name it, it’s coming. I love you Sooz, mp

  8. Susan,

    Desde que nos enteramos estamos en shock pero nuestra fuerza y cariño están 100% con vosotros.

    Muchas gracias por compartir este blog con nosotros. Tengo amigas que han pasado por lo mismo pero nunca lo he vivido tan intensamente como leyendo tus comentarios que se nota que salen de lo más profundo de tu corazón.

    Un beso muy fuerte para ti, Mauricio y las niñas de tus primos de Madrid y ¡¡mucha fuerza!! Aunque no nos cabe la menor duda, por todo lo que sabemos de ti, que esto dentro de poco va a ser una mera anécdota.

    Cuídate mucho y contad con nosotros para lo que necesitéis.

    Javier, Javi, Álvaro y Esther

  9. Dear Susan:
    While in New Orleans, Carlos Miguel and Isabel recently told us of your diagnosis. We are grateful Isabel, Sr further updated us with your wonderful Crossing Cancer blogs today.
    It seems unfair that this disease touches so many lives. Cancer is initially one of the most devastating news one can hear. We experienced identical reactions and emotions upon learning our then 15 year old son had stage 4 cancer (diagnosed Christmas Eve; his first chemo was on his 16th birthday, Dec 29th, 1995). Darryl, Jr now looks back on that year as a bum “bump in the road”.
    We are grateful to learn through your blogs that you’ve kicked in your positive, competitive attitude, are supported by a superior medical team, surrounded by devoted family and friends while uplifted by their love and prayers.
    Keep up that amazing “Susan-spirit”!
    You are absolutely blessed with all the keys for remission and cure.
    Our love and prayers to you and your beautiful family,
    Louellen & Darryl Berger

Trackbacks

  1. Crossing Cancer (Chapter 1) | Swim4Good
  2. Crossing Cancer (Chapter 3) | Swim4Good
  3. Crossing Cancer (Chapter 2) | Swim4Good
  4. Crossing Cancer (Chapter 5) | Swim4Good
  5. Crossing Cancer (Chapter 7) | Swim4Good
  6. Crossing Cancer (Chapter 8) | Swim4Good
  7. Celebrating and Movin’ On! (10th and Hopefully Last Post in Crossing Cancer) | Swim4Good

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