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.

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.

 

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!

Attitude and Support

Attitude and support, support and attitude – they go hand in hand. I am fortunate to have a wide and deep variety of support. I have my family – parents, my kids, siblings, aunts, uncles, cousins, and my husband’s family. I have friends who are like family who I have known my entire or life or 37, 34, 0r 25 years. My book club peeps, my work friends, Trumbull friends, my kids’ friends, basketball friends, friends who are cancer survivors, friends who  are getting cancer treatment, and my Facebook friends. And there is my boyfriend who supports me in so many ways, literally nourishing me, body, heart and soul.

I have been listening to a guided imagery from Health Journeys and a section of it goes like this:

“as the expanding circle of light approaches you with its generous energy, and gently surrounds you, you become aware of a warm presence surrounding you. And looking around in this remarkable light you can see that you are encircled by gentle loving beings, immediately recognizable as allies, loving friends with special gifts and powerful abilities, a whole circle of smiling well-wishers in the bright humming light….all gathered around you, warming you with their protective presence, nodding and smiling.”

I have absolutely no problem, seeing this, feeling this and seeing all the faces, feeling the love and support, because I live it every day.

This week I have received it in spades. Lisa drove me to Boston and stayed overnight to visit the second day, Alison came for a 6 hour visit today, Scot came up and surprised me for a quick 2 hour visit (plus the 2 1/4 hour ride up and back), Sarah comes on Saturday and will stay with a friend to visit on Sunday too.  And then Scot comes back to pick me up on Sunday. I have received loads of emails, texts and phone calls. My nephew Hunter sent me a youtube playlist of videos to cheer me up. Everyone keeps asking if I am bored – I actually don’t have time to be bored!

This support allows me to maintain a very upbeat attitude. The staff here has been regaled with peals of laughter from my room, me with a friend, me alone with a silly video from my sister.  I’ve been trying to maintain some fitness walking laps in the hallway, or like today dancing laps in the hallway with my headphones on.

I had a ton of delays before they finally got the treatment started at 5:00 p.m. yesterday, more than a full day after I was admitted, But I really didn’t get too aggravated. I try to be understanding while staying on top of what I need,  My attitude is appreciated by the staff, who have really been terrific here. It is service like you would expect in a fine hotel.  Every time anyone comes to my room it’s, “Do you need anything?” or “Is there anything I can do for you?”

The love and support from friends and family on top of the confidence I have in my doctor and care team here leaves me generally feeling calm, secure and peaceful.

Don’t get me wrong, I have my moments, I worry about the future, I have mourned the impending loss of my hair (just trying to come up with a solution now) and stress sometimes over all the self-management of my care that is required.

Because, you know, it’s always something…

Today it was chemotherapy and an ever-growing list of other meds (including finding an anti-nausea med that is working), laughing at cat videos, delivery of my bubbly water and a stack of magazines, dancing in the hallways, surprise visits, a completed crossword puzzle or two, godiva chocolate and love from everywhere.  I’ll take it.

Now if I can just figure out how to get some sleep between the dexamethasone and all the necessary overnight visits from the staff!

Life

After a glorious wedding weekend, filled with love, fun, family, friends, laughing, dancing, and wedded bliss, a dear friend’s son suddenly passed away. Just like that, elation to devastating sadness. Life us like that. And there are no words of condolence. No fixing it. And it seems so banal, but truly all we can do is relish the “good” things, the happy moments, the glorious occasions, the glowing smile of your daughter the bride, the arm of your son around your shoulder with a knowing squeeze, the silly laughs, the snuggle of your dog, or holding hands.

And then, there’s the cancer. A couple weeks before the wedding my doctor at Dana Farber decided to switchg treatment. My “numbers” had plateaued. They want to see them going down, hopefully to zero, a “complete response”.

So, after my off week the week before the wedding (which was perfect, I felt great, super great even!), my 5th cycle started last Monday. No more Revlimid. Still getting dexamethasone (steroid) and Velcade twice a week. And adding cytoxan on days one and eight of the cycle (followed by one week off). With the cytoxan I get an anti-nausea medication (Zofran) along with a prescription for it.

I have to say I don’t feel as well with this regimen as I did with the last. The nausea lasted all week, although was abated by the Zofran. I was more tired, more achy. But nothing that actually held me back (save the one day that I went straight to bed when I got home from work).

This morning my blood work showed that I am neutropenic (low white blood count), a side effect of the treatment. But going ahead with treatment anyway with the addition of Neulasta (a drug that promotes white blood cells) which I will come back in for tomorrow.

So, onward we go!

Because that’s life.

So much to celebrate

My daughter is getting married this week. My daughter, my baby, my firstborn. And yes, there is so much to be thankful for, to celebrate.

She is marrying a wonderful, fun man, who seems to be a very good match for her. The wedding also makes them officially a family, as he has two young daughters from his first marriage, who adore my daughter and she them.

loveI had hoped to get through the wedding without starting treatment and without revealing that I had multiple myeloma, but that was not to be, But, I am grateful that it has not interfered with any of the activities or the joy of planning such an event. We hosted an engagement party, bought dresses, tasted food, had a fabulous “Showerpalooza”, shopped for accessories, worked on centerpieces, and scanned a zillion photos. I even made my daughter try on my wedding dress, as I always said I would, she has always hated it, and indeed it was not at all appropriate – but it was fun doing it. She made hEr wedding ring from her father’s wedding ring. We’ve had so much fun, reminisced and made new memories – and we haven’t even had the wedding yet!

We will all miss my husband, her father, but she is determined that this be a happy day and I could not agree more.  He will be with us, as he always is, and we have already talked about setting aside a moment, which we will do. But, if there is anything that losing a spouse and having cancer has taught me, it is to enjoy all the good things, the happy moments and the joyous events, fully and with all I’ve got.

We will be surrounded by friends and loved ones, not only from our backyard and all over the country, but all over the world – Massachusetts, New Jersey, Pennsylvania, DC, Virginia, Michigan, Florida, Georgia, California,  London and Argentina.  we are so fortunate to have so many people with which to share our love and this special day.

And as someone asked me recently, yes, I have comfortable dancing shoes, if you’re looking for me I’ll be on the dance floor!