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.

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.

 

Why the words are so important

I had my appointment at Dana Farber this past Thursday. And I waited to post about it until I had time to listen to my recording of it. I knew it was positive. There were lots of “yays” and even hugs at the end. So when I was asked how it went I would say “it went well”. But with cancer, at least with my cancer, I am relying on numbers and then how those numbers are translated into words to know how I am doing. Because aside from effects of the numerous treatments I have had, I have no symptoms of my cancer.

So this morning I listened to the recording and wrote down some of the words.

  • With myeloma at this low level
  • Light chains are great
  • IgG is normal
  • Standard maintenance therapy is revlimid 3 weeks on and one week off, because of your genetics (this is the genetics of my multiple myeloma) we will also do velcade every other week
  • Shouldn’t cause more neuropathy
  • Side effects pretty minimal
  • The transplant achieved what we were hoping
  • Free light chains came down quite dramatically 400-500 to 20
  • Come back every 4 months then stretch it even beyond that
  • We are on cruise control now
  • Your myeloma is going to be gone. It’s almost pretty much gone. This (maintenance therapy) is to keep it away for years and years.
  • Your immune system is actually better than it was because the myeloma is not affecting it.

So there you have it, lots of positive words, along with “yays”, smiling faces, joking around and hugs.

I don’t know why, but I remain pretty neutral, not pessimistic, but not even cautiously optimistic. I feel like I’m from Missouri – show me. Show me I’m still cruising along a year from now, 2 years from now.

I guess, I don’t want to get too high, it makes the lows feel that much steeper.

New Land Speed Record

i went to Smilow when the lab opened at 7 am to get my pre-treatment blood work and then went to work. 

I had a 12:30 appointment so I left my office around 12:15, 5 minute walk to my parking garage,  then drive and park at Smilow and check in on the 7th floor. The nurse took me in right away – weight, vitals and the usual questions (pain, neuropathy, bowels, etc. ). She had ordered the chemo when she saw my test results come through. I took the dexamethasone. She got a co-worker to “read” (safety double check to make sure the right person getting the right medication ) then the shot in the belly and I was out of there and back in my office in less than an hour!

I had Book Club in Redding tonight. Not the best planning on my part. I was tired. Couldn’t have any wine. Got leg cramps driving to and from. BUT it was really good to see everyone who made it and catch up. (We even talked about some books!)

Having trouble sleeping tonight, even with my “aids”. My legs are achy and I’m quite nauseous. 

But, only 6 more days this cycle and then a week off. 

Balls!

I went to work yesterday, in my office, for the first time in 3 and a half months. It was good to be back. And only two people made me cry with their kindness and sympathies – not bad!

But the line of the day goes to someone I don’t know well. When I walked by her in the lounge she said, “Your hair looks great! That takes a lot of balls!” Well, yes, yes it does. 

Getting my second treatment this morning. I’m a little tired. A little cranky. A little queasy at times. A little achy at times. 

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!

Consolidation and Maintenance

During my visit to Dana Farber yesterday Dr. Munshi determined what is next for me. I will start with 2 cycles of RVD (revlimid, velcade and dexamethasone) for my consolidation therapy. This is the same chemotherapy I started with back in January 2015. I will get velcade injections and dexamethasone twice a week, two weeks on and one week off, with revlimid (pill) every day for the two weeks on. For my maintenance therapy he is recommending velcade (injections every other week) and revlimid (I am not clear on how often, I know it is a lower dose). The maintenance therapy is ongoing, as long as it keeps working and I do not experience adverse side effects.

They ran blood work, including the serum electropheresis which shows my M-spike, a key multiple myeloma indicator, the results of which are not in yet. Smilow ran it a few weeks ago and it was down to 0.8, which is good, but not 0. Dr. Muhshi and Tina Flaherty (the APRN) said that the melphalan (the chemotherapy I had prior to the rescue stem cell transplant) keeps working for 6 months sometimes even longer, that and the consolidation therapy should help to push that number down further. They also told stories of patients who never get to 0 but hover under 1 for years and years.

So that’s where I stand and what I will be doing. I’m slowly remembering what the treatment was like for me last winter. Not terrible, not fabulous. Some sleepless nights, some tired days after sleepless nights, feeling a little bit off, constipation, some queasiness, some shakiness and then feeling normal again on the week off. And it’s only 2 cycles. I got this.

Lisa took me to Boston yesterday and we laughed and giggled our way through. When we were waiting in the exam room I was explaining and demonstrating how lunges were still hard for me, and it’s all about the balance and how I need to look ahead at something stationary. I was looking at her, so of course she proceeded to waive her arms and move all around. All this while Dr. Munshi and Tina happened to be walking by the room on their way to another patient. Apparently, we were a bit loud, they said “We’ll join the party in a minute.” They mentioned later it sounded like we had 10 people in the room – nope, just me and Lisa! It was actually a fun trip. And I wore the mask and gloves for the last time when we were in the clinic, which I whined about. Lisa got a big kick out of this, ‘After all you’ve been through without a complaint, this you’re whining about?” Everyone has their limits 🙂