Everything keeps moving in the right direction. The last time I needed a transfusion was March 19th. So when I went to Dana Farber two weeks ago on March 25th I had my central line removed! This was huge for my day-to-day. The three lumens on the line had to be flushed daily (by me, if I didn’t have an appointment at Smilow). I had to wrap it up to take a shower and never stand full on in the front in the shower. An inconvenience for sure.
With my hemoglobin and platelets continuing to rise it was just my ANC that was lagging and needing a boost from time to time (shots of filgrastim that I administer). The last time I needed a boost was March 29th and yesterday I asked Dana Farber if I could go to once a week blood draws instead of twice a week – and they agreed!
And most importantly my multiple myeloma numbers continue to go down. I go back to Dana Farber on April 22nd for another check in. When I went in March I had three questions all ending in -ine:
Central line ✓ (removed)
Vaccine ✓ (I can get it at 3 months, however they don’t know if I will develop an immune response or not)
Wine ✓ (in moderation)
And I am back to doing toe lifts and squats when I diffuse my hair. Full workouts coming soon. I feel better and better every day. (The new puppy is definitely contributing to my activity and fitness!)
I have been going to Smilow every Monday, Wednesday, and Friday since I came home from Boston on February 12th. I started off needing blood (low hemoglobin) and platelet transfusions almost every single time and have always needed something and often both.
In the last week and a half or so things have been looking up:
March 5th: only blood
March 8: only platelets
March 10: only blood
March 12: only platelets
March 15: NOTHING!
March 17: NOTHING!
So, today Alfredo at Smilow and Liz at Dana Farber decided that I only need to get my blood checked two days a week. I will go in every Tuesday (because I need my central line bandage changed weekly) and I will get my blood tested locally on Thursday and only go in on Friday if I need anything!
There is light at the end of the tunnel!
My ANC with the assistance of the Neupogen shots had gotten all the way up to 2.8! So they took me off of the injections. But, Monday it was 0.8 (which means I am at high risk for contracting infections) and today it was 0.7. Alfredo and Liz decided that I wold give myself the Neupogen injections on days that my count falls below 1.0 (and that should hold “for a bit”).
The next goal: my platelets and hemoglobin continue to improve so I can have the central line removed!
It has been wonderful being home, after being away for a month and a total of 24 days in the hospital (24 days!!!).
I have had some very exciting news from Dana Farber. My free light chains (one of many myeloma markers) have completely normalized. My heavy lightchains have gone down by lalmost half and my M-Spike is also down by almost half.
Lisa, Erica, and Kirsten “watched” me this week while Scot worked. Next week (my last week that I am required to be watched) Erica and Sarah are on duty. Sarah will take me to my Dana Farber visit on Thursday (bone marrow biopsy, blood work, EKG, and 2 MRI’s because insurance is denying the PET scan again).
I’ve been feeling pretty well. My legs have been sore, I think from laying in a hospital bed for all that time. The only remaining bone pain seems to be my lower back. I had aggressive lesions at L1 and L5. I get tired and nap every afternoon.
When I am not at home being watched I am at Smilow (3 days a week) getting blood work and transfusions as needed. This is because of my lingering cytopenia. Here is some information about cytopenia from Healthline:
Cytopenia occurs when one or more of your blood cell types is lower than it should be.
Your blood consists of three main parts. Red blood cells, also called erythrocytes, carry oxygen and nutrients around your body. White blood cells, or leukocytes, fight infection and battle unhealthy bacteria. Platelets are essential for clotting. If any of these elements are below typical levels, you may have cytopenia.
Several types of cytopenia exist. Each type is determined by what part of your blood is low or decreased.
Anemia occurs when your red blood cells are low.
Leukopenia is a low level of white blood cells.
Thrombocytopenia is a deficiency of platelets.
Pancytopenia is a deficiency of all three parts of the blood.
The symptoms of cytopenia depend on which type of the condition you have. They can also depend on the underlying problem or condition that’s causing the low blood cell counts.
Symptoms of anemia include:
shortness of breath
dizziness or feeling lightheaded
cold hands and feet
Symptoms of leukopenia include:
Symptoms of thrombocytopenia include:
bleeding and bruising easily
difficulty with stopping bleeding
My hemoglobin held from my transfusion at the hospital last Friday, until this Friday. My platelets did not fair as well. They were 24 last Sunday, 11 on Wednesday (I received a transfusion of platelets) and 10 on Friday (received more platelets). My ANC (absolute neutrophil count – what they follow for the leukopenia) has been ready at 200 even as I give myself Neupogen shots every day.
I did some research and found a study with this chart showing how long it takes CAR-T patients to recover from low blood counts.
The research nurse at Dana Farber threw out 2 months as a time frame. We’ll see.
What it means for my day-to-day is that I have to flush my trigger-lumen central line every day, give myself the shot of Neupogen and go to Smilow 3 days a week. If I need a transfusion the visit can be 4-6 hours.
Trying to be patient, but you know that’s not exactly my forte!
Let me also take an opportunity (again) to thank everyone who has reached out, sent food, babysat me, sent other gifts and treats. I am so blessed to be loved and cared for by so many. Everyone’s generosity has been mind blowing.
I’m wearing jeans, socks and shoes – street clothes – yay!! Pick up time is 3:00, if things work out a rad earlier with the hospital and Scot’s arrival here (still no one can come in) I might bust out a little earlier.
I’ll be self-administering Grannix injections and flushing my 3 lines daily. Plus some Smilow visits for transfusions.
Fortunately, they are letting me go home and not to a hotel here in Boston. I will need caregivers on days that Scot is at work. Thankfully, Lisa and Erica are able to be with me (with a few back ups just in case). Then, Lisa and I will return to Boston for my first follow up tests on the 25th. (And maybe line removal??)
The photo above is “y” I haven’t updated the blog, I apologize for the lapse.
Since I arrived here at Brigham and Women’s (Dana Farber’s inpatient hospital) I have been asked what every nurse and doctor calls “those silly questions”:
Where are you? Brigham and Women’s Which city? Boston Some version of what’s the date? February 2021 (at least) Can you name 3 simple objects in the room they point to? Flashlight, refrigerator, pen Can you count backward by 10’s from 100 to 0? 100, 90, 80, 70, 60, 50, 40, 30, 20, 10, 0. Some doctors ask can you name the days of the week backwards starting with today? Tuesday, Monday, Sunday, Saturday, Friday, Thursday, Wednesday
And the last one is to write a simple sentence. Seems weird but for the most part thinking of what to write was the hardest part. In one midnight testing I wrote: “The rain in Spain stays mainly on the plain.” I laid back down and couldn’t even remember where that came from, then of course, My Fair Lady, Eliza Doolittle – random!
But on Thursday (day +9) I did get a fever and they could see the indicators in my blood that there were a lot of cells were dying. I was finally getting the response to the CAR-T cells I had been hoping for. Both Friday and Saturday were rough days. Below are sentences from Saturday.
For several days I was in and out, coming and going with the fevers. I totally “lost” at lease one day, maybe two. Examples of what it was like:
I could not figure out how to make a call with my iPhone
And I wanted it on speaker, also a no go
If you did get a call from me there was a day I could only get about 3 words out
Texting was very difficult, and I chose not to for several days, that took the longest to come back
Difficulty getting out of bed
Napping most of the day
It was just yesterday morning that I quickly sat up on the side of the bed and felt almost totally like myself.
This was all part of the CRS (cytokine release syndrome). CRS is also seen in COVID patients.
I also had TLS (tumor lysis syndrome), this was less something that I felt, but was carefully controlled by the team here. TLS can damage your organs, including the kidneys, heart, and liver.
The really good news, as they kept telling me, was as badly I was feeling my myeloma was getting it worse. They were very impressed by the response, saying they hadn’t seen such a great response. It will be several weeks before I come back for scans, etc.
And yes, I said “come back” – it looks like I will really be going home on Thursday. Today they finally stopped the extra fluid, and other meds, and as of tonight my numbers look great on their own.
I will update if that changes, and plan to update more as I can now.
I hope you can laugh along with me at my neuro toxicity “writings”. When I first laid eyes on it I laughed and laughed.
There must be some others in a trash bin somewhere, perhaps I’ll ask if they save them as part of my record.
Again, this team here both nursing, rounding PAs, PCAs, and the amazing brains on the CAR-T team (including my Mr. Munshi, but many others).
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.
No signs of side effects. They gave me platelets yesterday (count was down to 8). I am feeling okay, except for the bone pain.
They administer the neurological test 4-5 times a day. Part of the test is writing a sentence. Any sentence. Whatever comes to mind. I’ve done the weather, Kensley, etc.
But tonight when they woke me up to check my vitals they administered the test. Write a sentence, hmmmm… this is what I came up with: “The rain in Spain stays mainly in the plain.”
After the nurse left I racked my brain to remember where that came from: My Fair Lady. What?? I passed the test but I think I may be going a little crazy! Nine nights in a hospital with no visitors allowed.
But seriously, I’m fine. What will I come up with next?
Everything looks good to get the CAR-T cells today. White blood count is sufficiently dismal to make room for the CAR-T cells to move in and proliferate. And I’m getting some extra fluid for my slightly low blood pressure.
I passed my baseline neurological test with flying colors (now I sound like our former president). I asked them if I started to not do as well would I notice or would still think I was doing fine. They said I wouldn’t notice and they would still tell me I was doing great! I found this comforting. They also said neurotoxicity in myeloma patients getting CAR-T is not very common (but possible).
The cells are currently being thawed in a water bath and I should get them early this afternoon. It is somewhat of a non-event, but the attending did say congratulations on his way out 🍾
The nurse asked me last night if I wanted my cells blessed. This took me aback. And then I received some beautiful words from some friends and know that I am already blessed.
“Hope sees the invisible, feels the intangible and achieves the impossible”. Anonymous
May each cell be the hope we can’t see but believe will be the cure.
I bless you, and all your cells; I bless the cells you are about to receive; I bless the minds and spirits, and brains and bodies, and spirits of every person, and every energetic and vibrational presence involved in this process.
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.