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.