Coffee, Peanut Butter, Wine, Buffs and the Ocean

My stay at Dana Farber/Brigham & Women’s ended Sunday night with what felt like a miracle.  Not unlike the story of the Chanukah oil/menorah, only in reverse. The last bag of chemotherapy was scheduled to end at 11:00 p.m. At almost 8:30 I decided to start packing up my belongings, just to pass the time. As I was dragging my IV pole around the room, I glanced at the furthest most tube and saw that it was no longer dripping – the chem bag (covered by a colored sleeve to keep it protected from the light) was done all except for what was in the last piece of tubing! We were home right around midnight – total score! (The nurses jokingly teased that I had changed the settings to get out sooner.)

Since getting home I have felt pretty well, nothing terrible, some nausea, some fatigue, mostly just not feeling like myself. Case in point, I have absolutely no desire to have, what most people consider my three staples: coffee, peanut butter and wine,  It is the strangest thing.

On Monday, worried that my hair would start falling out in clumps at any moment (I am unclear as to the actual timing), I went to an outdoorsy store and bought a buff, just so I would have something on my head (see video here on how to wear a buff) in case I suddenly looked ridiculous. I chose a nice neutral shade, a cream that would go with everything. I put it on, and actually thought it looked pretty good, that is until I realized that the nice neutral cream color, absent my dark curls sticking out, will just look like a skull cap, precisely the look I am trying to avoid! (I exchanged it yesterday for a deep purple with fuchsia print.)

In other news, I fainted for the first time in my life on Tuesday. I was getting my first blood draw from my PICC line. It took a bit of time and the nurse was flushing the lines several times and I was feeling nauseous from the smell of the heparin. I told the nurse I was feeling nauseous and lightheaded. She told me to take slow deep breaths, which I did. And then I told her I was feeling really lightheaded. And then, that I thought I was going to throw up. She held a pan in front of me and told me to take slow deep breaths and look at her,  I felt terrible and all I could think was, “That’s it?  I’m in a hospital, with a nurse and all you got is ‘slow deep breaths’ and ‘keep looking at me’!?!? Really??” The next thing I knew I was dreaming, a rather pleasant dream (although I could not recall the details and my sister advises that likely it was a hallucination as opposed to a dream). And then I woke to my name being called and very surprised that I was not home snoozing in bed.  Apparently, I was passed out for about two minutes. But, some IV fluids, anti-nausea meds and a ride home I was fine.

I am continuing to wrap my head around the details, appointments, restrictions, etc. of my upcoming stem cell transplant (SCT),  I spoke to the SCT coordinator today about several things, but I was keen to find out if she thought I would be able to go on my annual vacation to Hampton Bays, NY in August.  And….she did not think that would be a problem!  And not only that but she added that I would be able to swim in the ocean, which is probably my favorite thing to do in the world.

Life is good.  It really is.

Overwhelmed

This post is going to be quite the juxtaposition from the last. I am still feeling okay and getting good care here at Dana Farber. But, starting late in the day on Friday it felt like a lot was coming at me all at once.

It started with a call from the visiting nurse company assigned to deliver the supplies and give me the instruction for me to flush my PICC line myself every day at home. I really am fine doing that, I’ve seen it done again and again in the hospital.  The problem was the woman on the phone. She was irritated with an end of the day on a Friday request for service on Monday. Plus I work, which is an inconvenience for them. And then she needed to know which doctor would sign the nursing plan. I gave her my list of doctors but I did not (and do not) know who will sign off on the plan. I finally got to the point where I asked her if I should not leave the hospital with the PICC line in – she was giving me no confidence that she could get everything done for me on Monday. She then backed down a little bit, but basically insisted on leaving it open and me with some doubt.

Shortly after that I checked my email and I had received the calendar and more information in preparation for the stem cell transplant.  There were some surprises in there for sure. A whole packet of information regarding dental evaluation and treatment that needs to be done before the transplant. Stressful for me because a.) I am in between dentists and b.) I am trying to not miss so much work.

And then there are all the details of the SCT and how much time I will be away from home (it is looking like a little over 3 weeks, if all goes well). Never mind the side effects of the treatment and transplant itsself.

And then there are all of the restrictions after discharge once I am home. And how long they last.

And I have to get a wig.

Oy. It will be okay. As a few wise people have reminded me in the last day, one ting at a time, one day at a time, one moment at a time.

I was talking to Sarah today and I started to “be concerned” about not being able to bring my own toiletries for my stem cell admission and what would my hair look like without my bevy of hair products, and then, we remembered – I won’t have any hair!

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!

Luggage and Math

i am a terrible packer. Ask anyone who has traveled with me. Almost three years ago I opened my suitcase in Cape Town, South Africa and said, “Who packed this!?!” I had it all wrong. I don’t always pack badly but I always overpack. As I did today. 

I knew I was going to have a PICC line in for the treatment. But I thought I would have an opportunity once a day to change my top. And I was wrong. So bag full of comfy, hanging around all day in a hospital for 4 days clothes and I am in a Johnny coat. 

And speaking of 4 days, my excellent calculating skills totally failed me. I knew that although I had to be admitted today I would not start the treatment until tomorrow (Wednesday). I knew that the testament was a constant infusion for 96 hours (4 days). I have no idea why I thought I would be going home on Saturday. No, I am here in the Johnny coat, closet full of clothes, until Sunday.  

Next

So, the new regimen also did not exactly do it’s job, so Dr. Munshi at Dana Farber has prescribed a different treatment, CDEP, Dexamethasone, Cyclophosphamide, Etoposide, Platinum (Cisplatin). The four drugs are given in combination over four days, dexamathesaone in a pill and the other 3 via a slow, constant infusion as an inpatient. I am going to Boston late morning tomorrow and will be admitted to Brigham and Women’s (across the street from Dana Farber, where they do all of their inpatient treatment).I should be discharged on Saturday. My understanding is that I will mostly be bored (maybe I’ll blog!). The following week I may not feel great as my blood counts will likely be very low. I will be watched by my doctor here at Smilow and may need transfusions and/or the support of neulasta (again).
And the following week, I may lose my hair – eek. There will at least be thinning – which I can well afford, as long as it isn’t in a big clump right on my forehead!  But, I am mentally preparing to lose it all. And even if not from this treatment then certainly from the stem cell transplant that this treatment is preparing me for, which will likely be in about 8 weeks or so.
Aside from total vanity, losing my hair means that the world will know I have cancer.  Although it is not a secret, I am not “out” at work, nor on Facebook. I just don’t want any pity parties!
The other problem with losing my hair is covering my head, my huge, gigantic head. I did some rough measuring and from my calculations I am just on the outside of the largest size in women’s wigs. I already know my head is too big for women’s hats. So, it shall be interesting…
The best suggestion so far came from my friend Michael, and I quote,”more cleavage”  Yes, there is always that. It reminds me of that old W.C. Fields quote that Ken use to repeat (often),

“If you can’t dazzle them with brilliance, baffle them with bullshit.”

or cleavage, same thing…

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.