Ground Hog Day

I’ve been in the hospital for 2 weeks today, and received my CAR-T cells one week ago.

Yesterday I asked the attending physician when he thought I could get out and when I could leave Boston for home. He said he would email Dr. Munshi for an answer

Today when they rounded on me he said, “No word on when I can go home.” A nurse mentioned that they wouldn’t let me go home if I was neutropenic (low neutrophil/white blood count) so I asked about that. And he said that would keep me in the hospital, that and side effects. So here we are. Ground Hog Day, again and again.

Finally Moving to the Next Step

The IRB approved my protocol. Now the protocol needs to be posted and printed and then Dr. Munshi will come over and consent me and then we can start.

The chemo is a 2-drug regimen. The first day I’ll get both (which is standard) and then apparently there’s some wiggle room for days 2 and 3.

The goal of this chemo is to move out all of my lymphocytes to make room for the re-engineered ones (CAR-T cells) which will proliferate.

They will watch my platelets (currently 12) and hematocrit (currently 23.4) and supplement with transfusions as needed.

I am about 90% sure we’ll start today, but it’s 10:30 and the clock is ticking…

I am so grateful for the love and support that continues to come my way. Thank you, thank you, thank you.

Inpatient

Sitting in the inpatient waiting area for my room to be cleaned. So close…

The FDA approved the expanded access request for me for the CAR-T cell therapy. The request still has to be approved by Dana Fatber’s IRB (Institutional Review Board) but that is being expedited. All of my orders need to rewritten and they are changing the dose of my chemotherapy because of the low platelets.

They anticipate starting the chemo tomorrow afternoon.

It’s been an interesting day because Alison and I had to check out of the hotel at 11 am. And COVID.

First we headed to the Blue Hills Trailside Museum (which is mostly like a small zoo), but it was closed.

From there we headed up the North Shore where we found delicious fish and chips and the Gloucester Fisherman’s Memorial.

Our last stop was Rockport, MA which is just lovely, hope to go back non-COVID (and feeling better).

All the while checking for email messages and finally calling the hospital and was told it would be ready around 5:00. Got up to the room around 6:30.

It was good to tool around in a car and see some sights (without exerting myself too much). This stay in the hospital could be anywhere from 10-14 days. No visitors allowed.

Day +5

Day +5 was a good day, although it started with a rough night prior. I woke up around 4 am sopping wet, assuming I had just had a terrible night sweat. It was not until I realized it was more moisture than would evaporate on its own that I hit the call button. As it turns out my fluid line had gotten disconnected. And then, after changing the bed and falling back to sleep I woke up with a migraine an hour later.

BUT, I had a nice visit with Kyle, neither of us needed a nap and I did not need any “coverage” anti nausea meds (I am getting two of them without requesting over the course of the day). I feel more like myself with more energy. I do understand that it may get worse again before it gets better. But I am also open to the possibility that it will continue to get better, or stabilize with a few bumps. Either way, I’ll get what I get and I won’t get upset (that works for 53 year olds as well as it does for three year olds).

My WBC is down to 0.22, which is considered fairly close to bottoming out. My hematocrit was low enough that I did need and received a unit of red blood cells. The nurse made sure to inform me and Kyle that this was prime stuff, from one donor, screened and irradiated, so more “good stuff” for me!

Anxious for Sarah to arrive tomorrow for a four day stay and not just because she is going to do my laundry.

Thanks to all the people who have hosted or will host me and my visitors here in Boston: Alison’s Aunt Maureen and Uncle Joe, Lisa’s friend ‘Grini, Ken’s cousin Herman and Marsha, Sarah’s friend Suzanne, Kyle’s friend Jane, and perhaps even an old school chum of mine Ellen (if it works out).

And lastly, a Happy Father’s Day to all you dads out there – I was sad to miss all three celebrations I would have gone to today, but delighted that a good time was had by all.

Day -2

All settled into the room. I ended up in one of the three rooms here without a shower. This means I have to put a mask and gloves on (which I have to do whenever I leave my room) and actually leave the unit and walk into a public hallway to get to a shower. I was warned that this might happen and was advised to request a room change, which I did. I am number three on the list for the three rooms. It’s not so bad for right now, but will get old over time.

The staff here is great. I feel very well cared for. This floor is exclusively for stem cell/bone marrow transplant patients. It’s all they do here and it shows. My overnight nurse told me her other patient flew here to get treatment from Dubai!

The food is almost comical starting with the photo above. That is last night’s dinner, Chili con Carne with cornbread, both very tasty. But I took the photo, adding the tiny packet of butter for perspective. It was the tiniest serving of cornbread I have ever seen! I had requested butter as a condiment and they sent three packets – there was literally more butter than cornbread!

I also ordered a banana, knowing that when I go home I can have thick skinned fruits, but the answer was no. Watermelon? No. Cantaloupe? No. So canned peaches it was.

For breakfast, I asked for Raisin Bran, no, no dried fruit (I forgot). So I went with Cream of Rice. Brown sugar? No. (I have no idea why.)

Lunch, turkey breast and provolone on a whole wheat wrap? No cold cuts. Ok, tuna and provolone? No to the cheese (I think maybe because it is sliced like a cold cut?). Ok, just tuna. And so it goes. Their mashed sweet potatoes and their butternut squash are both good and decent portions. I think I’ll end up looking slightly orange by the time I get home like a baby who only likes the mashed carrots and sweet potato baby foods!

I received my first dose of melphalan. I had to suck on ice for two hours and 15 minutes in order to avoid mouth sores. It’s amazing what you can do when properly motivated! Upside to that was no hot flashes during the ice sucking or for several hours afterwards (bonus!). They gave me prophylactic anti-nausea meds and so far so good there as well.

I walked in the unit twice for twenty minutes and they put in an order for a stationary bike for the room, waiting on PT for that.

Made of “Good Stuff”

Last week I had an appointment with my neurologist, because you know, I don’t go to enough doctor’s appointments!  Actually, I had to go because the stem cell harvesting process gives some people migraines, which I do get. Typically I handle my migraines with a combination of tylenol and advil. However I am currently not allowed to take advil, so off to the neurologist I went to get a prescription for migraine medicine, just in case. (Turns out I did not need it, I got a few headaches but no migraines.)

I have sen my neurologist on and off for over 25 years, she comes highly recommended from a doctor friend of mine, is Ivy League trained and I have always found her thorough and a very good clinician.  She is a little but, I don’t know, eccentric.

I had not seen her since being diagnosed with multiple myeloma, but she is the one who discovered my olfactory cortex meningioma (see Incidental Findings). So after a long review of my past and more recent medical history, a physical examination, etc. (everything neurologically is fine!). She sits across her desk and looks at me and says, “You know, you look really good.” I reply, “I know, everyone says that – nurses, medical assistants, doctors, specialists, attendings in the hospital, everyone.” She says, “I don’t think you know what they mean. Some people are made of bad stuff and they get sick and they look bad, but you’re sick and you look really good, you’re made of good stuff. I think you’ll be o.k.”

So after a not very technical evaluation, I guess that’s a good thing, I just might be made of good stuff, even though I have bad stuff going on.

My good stuff best be there for me as I approach the coming weeks. I have learned something recently, mostly talking to nurses (nurses are da’ bomb, by the way, so full of great information). The “stem cell transplant” is not actually the treatment for the cancer.  The treatment, to get rid of the cancer cells in my blood is the two days of high dose melphalan. This will “kill” both the bad cells in my blood as well as the good cells, hence the need for the stem cells. The stem cell portion of the treatment is actually called “peripheral stem cell rescue”. The stem cells come in to save the day and get your blood counts back into a normal range.

There are other side effects besides the low blood counts: nausea, vomiting (maybe for longer than the hospital stay), diarrhea, mucositis (sores along the digestive tract), heartburn espohagitis, risk of infection and fever.

This is the schedule:

Saturday, June 13th (afternoon or early evening: Admission to Brigham & Women’s Hospital
Sunday, June 14th (Day -2): First melphalan dose
Monday, June 15th (Day -1): Second melphalan dose
Tuesday, June 16th (Day 0): Stem cells reinfused

And then recovery in the hospital Days +1 through +14.

Days +6 through +10 are likely the days I will feel the worst.

Day +5 neupogen injections start and about a week later my white blood cell counts will start to climb as my stem cells mature.

Day +14 is my potential discharge date (June 30th). And then it is home where “the bulk of my recovery will take place” with diet restrictions for 30 days after discharge and infection control restrictions for 90 days after discharge.

Everyone’s side effects and recovery are different.

Here is to my “good stuff” doing it’s thing!

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!

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…