Cruisin’ Along

So, putting things in perspective I was officially diagnosed with multiple myeloma on May 5, 2014, rounding the corner to four years ago. (I only know this because I looked it up today.) I have been on maintenance therapy, post-stem cell transplant, for two and a quarter years (per Dr. Munshi, last week). I feel good. I am completely a symptomatic. My numbers look good.

And last week, Dr. Munshi told me I don’t have to go back to Dana Farber for SIX months – woot! No quarterly visits. Bonus!

The Hair Story

I have been meaning to write this for a while now. And I’m not sure why I even feel I need to write it. Maybe it’s because losing your hair is such an emblem of being a cancer patient. Or maybe it’s because my hair is a big part of me, literally, my hair is typically gigantic.

So, the prospect of losing it, was for me like for most cancer patients, something I was not looking forward to.

First, to prepare, the trying on of wigs:

I thought it might be fun to try to be a blonde, nope. Shorter wigs are easier to care for, but it just didn’t feel right and soon enough I would have very short hair! I went with the Raquel Welch “Showstopper”. Something about a Raquel Welch wig made me smile.

I learned an important and expensive lesson after I purchased my wig. Connecticut has a statute that requires insurance companies to cover up to $350 towards the purchase of a wig when your oncologist writes a prescription for a “cranial prosthesis”. My wig cost $478. When I submitted my claim it was denied. When I questioned the denial I was told that I had purchased my wig “out of network”. I had never even considered that there would be In network places to purchase a wig. Anyone going through this – read your insurance coverage carefully!

So, after my DCEP treatment, and before my stem cell transplant I was told my hair would likely start to fall out in about two weeks. So I waited. And then this happened.

And this is what it looked like:

The next day I eventually cut it short to my head and put on my wig to go to my stepdaughter Tess’ junior prom pictures. No one I saw even batted an eye.

I found sleeping on that short hair actually hurt. Somehow the short hairs are pushed against the grain of the way they normally lay and it HURTS, a lot. So on Mother’s Day my daughter Sarah came over and we shaved my head. Just like that. Wearing the wig took some getting used to, for instance in this Mother’s Day photo it is clearly falling too low on my forehead!

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I wore the wig to work every day. And everyone thought my hair looked so great! (Very few people at work, a handful really, knew I had cancer.) But wigs are uncomfortable, they itch, they tangle and they are hot, so at home it was often just my bare scalp.

And then there were the buffs and hats.

And everyone’s favorite the hat/hair!

Occasionally, I revealed my baldness in public.

But mostly I wore the wig, itchiness, tangles and all. At one point I even had to pay for a “haircut” for the wig! I needed to make it a touch shorter so it wouldn’t tangle so much on the bottom.

And then the growing out began.

Where it went from chic, to really not chic at all. My son Kyle was always the most brutally honest (not politically correct to share all the things he called me)!

At one point it was feeling oh-so-not-chic-at-all and in desperation I went for a haircut, where she thinned my hair in spots so it would lose some of it’s bushiness. It worked for a bit, although the growing out of the thinned layers was not so great – not sure I would recommend it.

And then there were the difficult times, which for the most part I found humorous (do excuse my mascara circled morning eyes in lots of these, morning hair was often the most “special”).

But one of my all-time favorites was when I sent a bad hair day photo to my nephew Hunter and he came back with the perfect response in seconds!

And I am still waiting for a great blowout…

In the meantime, some good hair days, some bad hair days…

But, really every day is a great day—and to be fair I’ll always have crazy hair!

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Thanksgiving

This Thanksgiving I am very thankful. Thankful and filled with gratitude despite being a widow and a cancer patient.

I am grateful for Dr. Munshi and Tina Flaherty, APRN at Dana Farber for their expertise in and careful study of multiple myeloma and the treatment of it. And for their kindness and responsiveness to me and my questions and queries.

I am thankful to be living in an era of mostly uneventful autologous stem cell transplants. Grateful for this therapy and the destruction of cancer cells that it allowed.

I am grateful for researchers, and yes, even pharmaceutical companies, who continue to develop new drugs to treat my cancer, two in the last week alone were approved by the FDA. One of these is an oral (pill) form of the maintenance drug I currently have to go to the clinic to get by injection. So this one will make a difference for me in the near future (as soon as it is available locally).

I am grateful to be employed by Yale University and for my co-workers who allow me to continue to work (and get paid) while I take care of my health.

I am grateful for the love of my close friends and family and the support they give me.

I am grateful for the kindness of all my friends, far and wide, both near and far, from old friends who I don’t see very often, and those I am privileged to see much more often, and those I may only “know” or “see” virtually, here or on social media.

This is the first thanksgiving in many, many years that I am not hosting. My daughter Sarah is hosting her first thanksgiving in her first house, which she moved into only a few weeks ago, and pregnant with her first child. We’re splitting the cooking. And as I “pass the torch” in a small way, I am grateful that I have, and we have, all the precious memories of thanksgivings past, when Ken was alive, feeding 3-4 dozen people, hikes in the valley, high school football games, grandchildren visiting, and crescent rolls (for the last time, year after year).

And I am grateful for Scot, who is present for my day to day, my ups and downs, my low moments and my highs, and my whining and complaining. He never panics, never lets me overdramatize, makes me laugh (and laugh and laugh), tells me I am beautiful (even when I am sure I am not), remains eternally positive, feeds me and occasionally, when I need it, reminds me to be grateful, which I am.

 

All sorts of things

Some of the little things, or the not so little things that make me feel better:

  • A friend checking in daily from her vacation in France
  • A co-worker telling me that seeing me go through this has changed his outlook on letting things “get to him” both at work and at home
  • A friend dropping off soup and flowers after I returned from the hospital
  • Texts from my nephew reassuring me of my beauty
  • Texts from  a dear old friend reminding me of the bonus of being hairless while riding in a convertible – so true!
  • Priceless stories from my oldest friend of herself and others fainting
  • Making people laugh retelling my fainting story
  • Having everyone at work tell me “how great (my) hair looks like this” – thank you Raquel Welch wigs and Progressions Hair Salon and Wig Boutique
  • Knowing my kids are supporting each other
  • My mother reading my large stem cell transplant binder while I cook her dinner and telling me that I can’t have salad or raw vegetables for a year, only to read it myself last night and see that it is only salad bars I can’t eat from for a year – the salad/raw vegetable limitation is only for a month – wait, is that a good thing – well, in the end it is, I am incredibly relieved and I’ve gotten a lot of laughs telling that story too
  • Waiting to leave the house with my buff on after a long day of wearing my wig (gets very itchy) and having Scot come downstairs looking like this:

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  • Reminders from those who have known me since I was born that I was bald until I was two years old
  • A former teammate and my cancer buddy reminding me that I am an athlete and that cancer is my competition right now
  • And all the love, emails, messages, texts, and comments on the blog from family and friends alike from near and far – you are all loved right back

P.S. Wearing that blouse and that buff, my kids and I determined that I looked exactly like Lucille Ball in the I Love Lucy episode where she is stomping the grapes (the blouse has poofy sleeves and I was also wearing a skirt) believe you me it was true!