A Family Affair

I haven’t been blogging in a while. Sometimes that means there isn’t much to say. In this case, I had things to say but they weren’t mine to say.

In April of this year, my younger brother Roger, started on the path to discovering the growing lump in his leg was a large soft tissue sarcoma. After fits and starts he found a great team of doctors at Memorial Sloan Kettering Cancer Center in NYC. He endured some very rough chemotherapy and then 5 weeks of radiation. On January 11th a team of surgeons will remove the tumor along with most of his quadricep muscle, they will shift nerves, blood vessels, and other muscles, and replace his femur with a metal rod.

To say he has endured all of this graciously is a huge understatement. HIs wife, Hope, has been his rock. We do what we can, mostly cheering from the sidelines as they are pretty self-sufficient. He posted on Facebook earlier this month, publicly sharing his journey:

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I am not sure how we became “the cancer family” and yet here we are. On the upside, he is constantly being told how well he handles everything, how good he looks, how resilient he is (much like I was told during my stem cell transplant and recovery) – so there is that. We are tough, we are strong, we stay positive. We are surrounded by many who love us. And we hold each other close.

The photo is the three of us (my sister, myself and my brother). We pose and my brother says “Stick your tumor out!” and then after we settle down my sister says “Smile if you don’t have cancer!” Honestly, I almost peed my pants.

So we will laugh together, and cry in private. We will be strong, and be strong for each other. And our love will hold us up.

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!

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.

VGPR

I have been a very bad blogger of late. What with a baby shower for my daughter, a week in Naples, FL with good friends, waiting for a baby to arrive, my sister’s 50th birthday, working, maintenance therapy, dealing with this mop of hair growing on the top of my head, and did I say waiting for a baby to be born!?!

Well, today is the due date and we are still waiting. My daughter wants to have a natural childbirth so we are hoping this starts moving along in the next few days so we can stop worrying about induction. Did I say “we”? Well, as her birth doula, I am worried about this too!

Two weeks ago I went to Dana Farber to see Dr. Munshi, I had not been since October. He took a while fumbling with the electronic health record, but after going back and forth he finally said, “We would say you had VGPR.” I knew what this meant and it was what I was expecting, but my friend Alison was perplexed., “What is VGPR?”Well,  VGPR is a Very Good Partial Response. My m-spike decreased by at least 90% thus meeting the definition. So I did not have a complete response (or what some people might call remission), but I had a very good partial response. And my numbers could continue to stay where there are today for a long time and they cold also continue to go down a bit with the leftover effects of the melphalan (from the stem cell transplant) and the maintenance therapy that I continue. But as there is no “cure” at some point I will likely relapse, but there are lots of options (read:drugs) out therefor the treatment of multiple myeloma and so far I have only tried a handful, and those can also be revisited.

Here is the clearest information I could find about VGPR: “Based on their results, researchers concluded that achieving very good partial response should serve as a major treatment goal for patients and their physicians – not only does it correlate with better short- and long-term event-free and overall survival, but it also encapsulates a larger population of patients than complete response.” So VGPR, a fancy acronym for “you done good, doing great doesn’t happen very often, now stay there”.

I will try and be a better blogger, (I still have the story of my hair to write) but who knows what will happen after this grandchild is born!

 

365 days past and leaping into the next 366

(I haven’t been blogging much lately for two reasons. One, there isn’t much to say; that is there isn’t much going on in my multiple myeloma world. Two, I’ve been very busy with everything else – a hectic fall photography season and the holidays. So two “good” reasons.)

So this past year has been, well, huge. Just a few days over a year ago I told my kids and my family and friends that I have multiple myeloma. A year ago on  January 5th I started treatment. I got the flu. I had a weekend hospitalization with a neutropenic fever. My daughter got married. I was hospitalized for 5 days for DCEP treatment. I bought a wig. I lost my hair. I had a stem cell transplant. My daughter got pregnant. I went back to work. My son got a dog. I had a busy fall season of photography shoots and editing. My hair started to grow back. I started maintenance therapy. And then the holidays.

The coming year is already chock full of things to look forward to:

  • Sarah’s baby shower
  • A trip to Naples, FL, staying with Dennis and Ruth Ellen and vising many others
  • The birth of my grandchild (sex currently unknown)
  • Graduation of two of Scot’s daughter’s (Maia (college) and Tess (high school)
  • A cousin’s daughter’s wedding in GA
  • Another week in the Hamptons
  • Our wedding (Scot and I)

And the ongoing maintenance therapy. And hopefully that is all on the myeloma front.

And of course the ongoing hair saga. More on that later.

As I wrap up this past year I want to thank everyone again for their love and support. You are my strength.

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.

 

Not Since May 29th

I am going back to work tomorrow, in my office, where I haven’t been since May 29th. That’s a long time. I worked from home some days before I started the stem sell transplant. And I’ve been working from home full time since August 24th. But I’ve been home here, for a long time (save the time at Brigham and Women’s for the stem cell transplant). A long ass time.

So, up a little earlier tomorrow. Put on some “real” clothes. Coffee in a travel mug. The Q Bridge commute. Walking from the parking garage to my office (glad it isn’t calling for rain). And then seeing all my work “peeps”. It’s been a long time. Did I say that already? You know, there aren’t that many people in your life you see 5 days out of 7, week in and week out. Only those you live with and those you work with. So many of them have been incredibly supportive, I am truly blessed.

I didn’t share my illness with everyone I work with (there are over 400 people in my building and because of the work I do I see probably 75% of them in a week). My wig was pretty darn good and didn’t give me away. (Although I suppose in retrospect, when I disappeared after that Friday in May, people said “Aha!”). So going back to a chorus of “how are you feeling?” and “I didn’t know.” and “I’m so sorry” etc. is not something I am looking forward to. But, I’ve been through this before as I did not share Ken’s illness with many people at work and it wasn’t until after he died that people knew what was going on.

I am looking forward to seeing everyone, especially the people in my department. I’ve been told it is very quiet without me there – ha! I bring the noise!

So no wig tomorrow, just my new short do, which a nurse yesterday at Smilow told me looked liked Charlize Theron, to which I replied, not Brittney Spears? At any rate, I will take me less time to get ready in the morning!

No more baby steps

Upon returning home from our week long vacation in the Hamptons I started to toy with the idea of starting to work from home earlier than I had originally anticipated. I am feeling better and better. The lingering symptoms are dry mouth, thirst and the biggest one, fatigue. The fatigue is somewhat difficult to track. I felt good on vacation, the trips down and back to the beach were completely manageable. Dining out every night was easy (ha!) as was strolling around town. I felt so good when I came home that on Monday I did what was close to my old full work out, the next day however, I was wiped out. So I am working on finding a balance. And although I am back to my regular 40 squats a day and take long walks without a problem, I wake up every morning with my legs feeling exhausted even though I have had a good night’s sleep.

We even went to a great wedding in NYC this past weekend. To prepare for it, I really took it easy the day before and the day of and I did fine. I danced and even stayed up until 11:00!

So. although I am heading up to bed these days at 8:00 p.m. I do feel ready to start back to work. At this point, I am only going to get fat and poor being home with no purpose. I have my first photography shoot this Friday (followed by one on Saturday and one on Sunday) and I will start working from home on Monday the 24th. In getting the doctor’s note required to start back to work I found out that I can return to working in the office on September 16th, which is earlier than I had thought (confusion on my part over which date we were counting from, transplant or discharge dates) and very good news. I miss my work peeps!

And of course, there is the hair update: it is growing. I’d have to say I am at the Sinead O’Connor stage. Here is a photo from the wedding prior to donning my wig.

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As I have felt better I started to wear the wig more (for the longest time I was just wearing buffs or nothing) and I did go and have it trimmed (only I could spend money at a salon when I have no hair!) and it is much more manageable now. But I am also going out now with “no hair”, meaning no artificial hair (I also have a baseball hat with hair that Scot calls my Sandra Bullock). I am now trying to figure out when I have enough hair to dye it to hide the greys.

So, I am moving along now at a fairly quick pace. I have an appointment on September 3rd at Dana Farber where I hope to learn what sort of consolidation therapy and maintenance therapy they are planning for me.

 

I Can’t Stop Touching Myself

My head, that is – and my new baby hair to be precise!

About 3 days ago my head started growing hair, real hair. I’ve had this weird stubble for weeks that has just been static, no growth, no change and only in a few spots on my head. Now I have this soft, baby hair all over my head! Progress! Real honest to goodness progress – most excellent. And I do find myself rubbing my own head all the time!

My red and white blood cell counts and platelets are all still trending in the right direction. I don’t have to have them checked again until August 17th. I am not sure when they will actually look at my “cancer numbers”. I am thinking maybe when I go back to Dana Farber on September 3rd.

I’d have to say I have reached a plateau in terms of how I am feeling. I am still easily fatigued and remain queasy most of the day. I did just read that the fatigue often lifts 3-4 months after the treatment, so I may have a ways to go. I continue to try and improve my fitness, but with baby steps. The queasiness seems to be something I just need to get used to for a while.

I have started to have an occasional quarter glass of wine with company (just don’t want more than a taste) and I had my first cup of coffee this morning, which feels more normal.

This Saturday is a big milestone for me as nearly all of my food restrictions (save raw meat and fish, salad bars and soft serve ice cream) will be lifted and I will be allowed to eat restaurant food – just in time for my annual Hampton Bays vacation. I can’t wait. I have been tempted to cheat as the date gets closer, but I am holding strong. After all, I have waited this long, what’s a few more days.

I have to admit to some anxiety about the long walk off the beach, up the dunes in the broiling sun, because of my fatigue, but I’ll just take it slowly, nothing is going to keep me off that beach, which is truly my “happy place”.

Thanks to everyone who sent books, cards, visited, walked with me, called, texted, etc. It has meant a lot to stay connected to the outside world during my “confinement”.