Remission

Dana Farber has a patient portal, where you can see your appointment and your lab results and send messages to your doctor. And they have a new feature now where you can read your doctor’s notes after your visit. These are the notes that your doctor puts into your record. Doctors have always done this. They are leaving information for themselves and for anyone else who might look back into your record. And now there is a new initiative afoot called Open Notes. I know about Open Notes because of my job at Yale Health. We have implemented this and call it “Shared Notes”. Interestingly, at Yale only 7% of patients are reading their notes.

For the most part notes are somewhat boring and a tad redundant. And this was as it should be. The idea is that your doctor would have shared what he wrote already. When I visited with a cardiologist last year he actually dictated his note while I sat there, and told me to let him know if he didn’t get something right. It was very interesting – and talk about transparency!

A few months ago I read my note from my visit with Dr, Munshi on January 18th (the notes are often not available right away so you have to remember to go back and read them) I saw something that caught my eye, this is what I read:

She is in remission both from symptoms point of view and Also from laboratory results.

Well, will you look at that, I am “in remission”.

I have to say that it does feel a bit different. The stem cell transplant is coming up on 3 years (3 years!) and I’ve been on maintenance therapy for two and a half years. Everything is moving along without much fuss. All good!

I have found myself feeling a bit cocky, well, not feeling cocky, but having some cocky thoughts – maybe I could take a break from treatment – which my intellectual mind knows is not wise nor possible. And there isn’t any reason to want to take a break, other than the biweekly bloodworm sticks, visits to Smilow and injections into my stomach (oh and the constipation, don’t forget about the constipation!). But, really, there is no need. And all it takes to burst my cocky bubble is to wonder about what would happen if I did take a break, and the numbers went up, and it was back, and back where I had to get more and different treatments. Thank you, no, I will stick with my boring schedule.

And that brings me around to why I will be walking in the MMRF Tri-State 5K Event on Sunday, June 10th. Multiple myeloma remains an incurable cancer, so we walk, and raise money and support great organizations like the MMRF in hopes of finding a cure. If you’d like to join my team on the walk (or donate) visit my page.

P.S. The co-founder of the MMRF, Kathy Giusti was highlighted in an article in the Wall Street Journal this weekend, “An Urgent Mission to Speed Progress Against Cancer”.

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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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Giving Back

I’ve come a long way thanks to the miracle of modern science. But it’s not entirely a miracle – it is brilliant minds working hard and funding from people like you and me. As I am approaching the 2 year anniversary of my stem cell transplant I am feeling the need to give back. To raise money and awareness for those who have gone behind me and for the struggles (selfishly) that I will face down the road.

I am putting together a team to in the  Multiple Myeloma Research Foundation (MMRF) Team for Cures 5K Walk/Run. And I invite you to join me on June 11th in New Canaan or to make a small donation to help fund the research in hopes that some day there will be a cure for multiple myeloma.

I share the photo above, which I lovingly call “Cancer on the Beach”, remembering the stem cell transplant, not how hard it was – but how amazing it was.

Here’s the link to my fundraising page: https://walkrun.themmrf.org/Tri-State/heathersmith.

Thanks as always for checking in here.

It’s Been a While

It’s been a year since my stem cell transplant. The ‘birthday’ of my new cells was June 15th. And it’s been almost four months since I’ve posted.

The reason for not posting has been two-fold  – super busy work/life stuff and not much cancer stuff.

I squeezed in a quick jaunt to Costa Rica with my son Kyle and my mom. It was beautiful, fun and full of adventure (zip-lining, Tarzan-swinging, waterfall rappelling, hiking, kayaking and driving on the roads). Our good friends Erica, Stacey, Lisa and my sister Kirsten threw us a fabulous engagement party.


Two of Scot’s daughters graduated (Maia from college and Tess from high school) and we threw them a graduation party.


We went to two weddings, one in Philadelphia and one in Georgia.

And my photography business has started the season with a bang – two weekends of three shoots each.

So as far as the multiple myeloma goes my myeloma numbers have remained low and stable (yay!). However, the revlimid has been messing with me a bit. First some nausea (enough to get me out of bed in the middle of the night to take something) and low platelets caused them to stop the revlimid three days early. And then the next cycle (two weeks ago) my ANC was 0.5 so they didn’t give me any treatment so I had almost two weeks off.

Last week I went to Dana Farber and Dr. Munshi changed my revlimid does from 25 mg to 15 mg.

In a recent conversation I had with Dr. Seropian at Smilow I said that treating this “is an art not a science”. He corrected me and said  “a craft really, you create a product with an art”.  So there 🙂

Writing this today while at Smilow getting poked and prodded – Zometa infusion, 5 vaccines (each a separate intramuscular shot) and my velcade injection. Fun times!

And last but not least enjoying every second I get with Kensley.

Kensley

Last Thursday, March 3rd, my daughter gave birth to a beautiful baby girl, Kensley Sarah. And although I would have been equally happy had she given birth to a boy, there is something very special about the name they chose for their daughter. They chose a “K” name to honor Ken, my husband who passed away 4 years ago (see About Me), and not just any “K’ name, but one with his name in it. I love it. Additionally, they honored my family tradition, one that I think is very special as it is passed down through the women, giving the first born daughter the mother’s name as the middle name. It has gone thus: Elizabeth Mary, Barbara Elizabeth, Heather Barbara, Sarah Heather and now Kensley Sarah.

It was an arduous labor, but Sarah was a trooper and Demian steadfastly supported her. I was honored to be there to support her as well. Kensley was amazingly alert from the moment she was born – so much so I commented that she was nosy! Sarah is like an old pro at this mothering thing, relaxed and confident, caring and calm. I am equally in love with this baby as I am watching my daughter be a mother.

And now, just because indeed it is always something, a quick multiple myeloma update. When I went to Smilow for my velcade injection on Thursday my white blood count had dropped quite a bit (my ANC was 0.6). So They halted all treatment (did not get the injection and stopped taking the daily revlimid) until they check my blood work again next week. The upside is that I feel totally fine. The downsize is that I am at risk for getting an infection that would be difficult for me to fight off. And just a reminder that this is a long and winding road, this cancer thing.