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.

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.

 

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. 

iPhones

I don’t know how people managed to get through cancer treatment without cell phones. 

Although I am kidding I am also grateful to be able to utilize this technology today as I start the stem cell transplant process with the mobilization chemotherapy at Dana Farber. 

This is essentially an all day affair starting with my 4 am alarm (on my iPhone) and hitting the road with Lisa, who slept over the night before. 

iPhone utilization this visit:

  • Lisa kept a list of the questions I wanted to remember to ask the SCT coordinators in her Notes for  me (we’re both in our 50’s and can’t remember sh!t). 
  • We used the Waze app to get here and more importantly navigate the horrendous Boston traffic. 
  • I ended up walking the last quarter mile (yes, the traffic was THAT bad) and was able to text Lisa where I was. 
  • Checking blood test results for labs that were taken an hour prior. 
  • I will be hooked up to this IV pole for 9 hours. But Lisa and her iPhone are my eyes to everything outside of this room. I’ve been able to browse the gift shop and peruse the cafe offerings all with photos from Lisa!
  • And then there is the entertainment portion, Drop7 (me), Farm Heroes Saga (Lisa), Facebook, Instagram, etc. helps to while away the hours. 
  • Also an excellent resource for argument solving; is it catmint or catnip? We were both right!
  • Lastly, but not least, the texts, emails and messages wishing me well today. 

I am ready for this next step and all it brings (both side effects and healing) but I have enjoyed these last few weeks being treatment free, just me. And to my credit (yes, I’m giving myself credit, oh the power of a blog!) I appreciated and acknowledged it daily. 

Addendum: I almost forgot – I used my iPhone to update my blog too!

    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:

    IMG_4610

    • 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!