Cytopenia

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

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.

Types

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

Symptoms of anemia include:

  • fatigue
  • weakness
  • shortness of breath
  • poor concentration
  • dizziness or feeling lightheaded
  • cold hands and feet

Symptoms of leukopenia include:

  • frequent infections
  • fever

Symptoms of thrombocytopenia include:

  • bleeding and bruising easily
  • difficulty with stopping bleeding
  • internal 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.

Remission

Dana Farber has a patient portal, where you can see your appointment and your lab results and send messages to your doctor. And they have a new feature now where you can read your doctor’s notes after your visit. These are the notes that your doctor puts into your record. Doctors have always done this. They are leaving information for themselves and for anyone else who might look back into your record. And now there is a new initiative afoot called Open Notes. I know about Open Notes because of my job at Yale Health. We have implemented this and call it “Shared Notes”. Interestingly, at Yale only 7% of patients are reading their notes.

For the most part notes are somewhat boring and a tad redundant. And this was as it should be. The idea is that your doctor would have shared what he wrote already. When I visited with a cardiologist last year he actually dictated his note while I sat there, and told me to let him know if he didn’t get something right. It was very interesting – and talk about transparency!

A few months ago I read my note from my visit with Dr, Munshi on January 18th (the notes are often not available right away so you have to remember to go back and read them) I saw something that caught my eye, this is what I read:

She is in remission both from symptoms point of view and Also from laboratory results.

Well, will you look at that, I am “in remission”.

I have to say that it does feel a bit different. The stem cell transplant is coming up on 3 years (3 years!) and I’ve been on maintenance therapy for two and a half years. Everything is moving along without much fuss. All good!

I have found myself feeling a bit cocky, well, not feeling cocky, but having some cocky thoughts – maybe I could take a break from treatment – which my intellectual mind knows is not wise nor possible. And there isn’t any reason to want to take a break, other than the biweekly bloodworm sticks, visits to Smilow and injections into my stomach (oh and the constipation, don’t forget about the constipation!). But, really, there is no need. And all it takes to burst my cocky bubble is to wonder about what would happen if I did take a break, and the numbers went up, and it was back, and back where I had to get more and different treatments. Thank you, no, I will stick with my boring schedule.

And that brings me around to why I will be walking in the MMRF Tri-State 5K Event on Sunday, June 10th. Multiple myeloma remains an incurable cancer, so we walk, and raise money and support great organizations like the MMRF in hopes of finding a cure. If you’d like to join my team on the walk (or donate) visit my page.

P.S. The co-founder of the MMRF, Kathy Giusti was highlighted in an article in the Wall Street Journal this weekend, “An Urgent Mission to Speed Progress Against Cancer”.

Back in the Saddle

I had three photo shoots this past weekend and I started working from home on Monday. It feels good. I feel good. I can’t return to the office until September 16th, wish it were sooner.

In other non-cancer news. Two weeks ago I had my MRI of my olfactory cortex meningioma (see my post Incidental Findings) done and last week Sarah and I went to see Dr. Sisti at Columbia-Presbyterian, CD in hand. It had been a year since my last MRI. There had been no growth the 6 months prior to that so he said we could go a year. Much to my surprise and my chagrin he told me it had grown, not a lot, but it had definitely grown and will need to come out. When he heard I had just had a stem cell transplant he said we would not do it this year. But still, it will need to come out at some point.

“Coming out” involves a craniotomy, it is not actually brain surgery, as they do not go into the brain, but it is skull surgery. There is a risk of damaging the olfactory nerves, in which case I would lose my sense of smell/taste. It is a 3-4 day hospital stay and a 30-day recovery. They make the same cut in your hairline as they do for a face lift, except you don’t get the face lift!

Oh, and I almost forgot, my first day working from home, I lost power. I ended up working in my local Starbucks for three hours.

I kid you not, it is truly always something 🙂

No more baby steps

Upon returning home from our week long vacation in the Hamptons I started to toy with the idea of starting to work from home earlier than I had originally anticipated. I am feeling better and better. The lingering symptoms are dry mouth, thirst and the biggest one, fatigue. The fatigue is somewhat difficult to track. I felt good on vacation, the trips down and back to the beach were completely manageable. Dining out every night was easy (ha!) as was strolling around town. I felt so good when I came home that on Monday I did what was close to my old full work out, the next day however, I was wiped out. So I am working on finding a balance. And although I am back to my regular 40 squats a day and take long walks without a problem, I wake up every morning with my legs feeling exhausted even though I have had a good night’s sleep.

We even went to a great wedding in NYC this past weekend. To prepare for it, I really took it easy the day before and the day of and I did fine. I danced and even stayed up until 11:00!

So. although I am heading up to bed these days at 8:00 p.m. I do feel ready to start back to work. At this point, I am only going to get fat and poor being home with no purpose. I have my first photography shoot this Friday (followed by one on Saturday and one on Sunday) and I will start working from home on Monday the 24th. In getting the doctor’s note required to start back to work I found out that I can return to working in the office on September 16th, which is earlier than I had thought (confusion on my part over which date we were counting from, transplant or discharge dates) and very good news. I miss my work peeps!

And of course, there is the hair update: it is growing. I’d have to say I am at the Sinead O’Connor stage. Here is a photo from the wedding prior to donning my wig.

IMG_0100

As I have felt better I started to wear the wig more (for the longest time I was just wearing buffs or nothing) and I did go and have it trimmed (only I could spend money at a salon when I have no hair!) and it is much more manageable now. But I am also going out now with “no hair”, meaning no artificial hair (I also have a baseball hat with hair that Scot calls my Sandra Bullock). I am now trying to figure out when I have enough hair to dye it to hide the greys.

So, I am moving along now at a fairly quick pace. I have an appointment on September 3rd at Dana Farber where I hope to learn what sort of consolidation therapy and maintenance therapy they are planning for me.

 

I Can’t Stop Touching Myself

My head, that is – and my new baby hair to be precise!

About 3 days ago my head started growing hair, real hair. I’ve had this weird stubble for weeks that has just been static, no growth, no change and only in a few spots on my head. Now I have this soft, baby hair all over my head! Progress! Real honest to goodness progress – most excellent. And I do find myself rubbing my own head all the time!

My red and white blood cell counts and platelets are all still trending in the right direction. I don’t have to have them checked again until August 17th. I am not sure when they will actually look at my “cancer numbers”. I am thinking maybe when I go back to Dana Farber on September 3rd.

I’d have to say I have reached a plateau in terms of how I am feeling. I am still easily fatigued and remain queasy most of the day. I did just read that the fatigue often lifts 3-4 months after the treatment, so I may have a ways to go. I continue to try and improve my fitness, but with baby steps. The queasiness seems to be something I just need to get used to for a while.

I have started to have an occasional quarter glass of wine with company (just don’t want more than a taste) and I had my first cup of coffee this morning, which feels more normal.

This Saturday is a big milestone for me as nearly all of my food restrictions (save raw meat and fish, salad bars and soft serve ice cream) will be lifted and I will be allowed to eat restaurant food – just in time for my annual Hampton Bays vacation. I can’t wait. I have been tempted to cheat as the date gets closer, but I am holding strong. After all, I have waited this long, what’s a few more days.

I have to admit to some anxiety about the long walk off the beach, up the dunes in the broiling sun, because of my fatigue, but I’ll just take it slowly, nothing is going to keep me off that beach, which is truly my “happy place”.

Thanks to everyone who sent books, cards, visited, walked with me, called, texted, etc. It has meant a lot to stay connected to the outside world during my “confinement”.

Trot, trot to Boston…

Kirsten and I headed up to Boston to get my first post-transplant check up at Dana Farber. We departed with plenty of time to spare, but In true “it’s always something” fashion there was an oil tanker that rolled over and caught on fire on I-91, which delayed us 45 minutes. It all worked out in the end as once we got there I pretty much sped from blood draw to visit faster than I ever have and we missed most of the traffic coming home.

The news once there was all good. There was of course the repeated refrain of “You look really good.” which is almost silly at this point, but better than the alternative. My CBC counts all look good. Platelets are steady, hemoglobin is in the normal range and my WBC continues to inch up. She actually said I had good bone marrow – which made Kirsten laugh, because you know, my cancer is in my bone marrow!

So at the end of July many of my restrictions will be lifted.I will be able to:

  • go to other people’s houses
  • go to restaurants and other public places (when they are not busy/crowded)
  • all of the food restrictions will be lifted except for sushi, soft-serve ice cream and salad bars

As of right now:

  • I am released to drive if I feel up to it, only short distances, and during daylight
  • I can have take-out cheese pizza (my Mom is bringing me one from Modern Pizza tonight!)
  • I can have a glass of wine (but I still have no taste for it at this point)
  • Some of the strict cleaning details have been eased
  • Only one more week of that disgusting mepron!

My primary instructions are to stay away from sick people and go home and continue to recover. My daily walks are up to 35-45 minutes and are including some decent size hills. I am up to 20 squats and I am getting ready to throw in some more of my other exercises.

The problem comes with the more I do, not only does it make me tired but it makes me more nauseous, so I am walking a fine line. I get tired from simply being upright for too long (just sitting). Yet I can do things like cook as long as I take breaks. Speaking of breaks, I can finally shower, get dressed and put on my eye make-up without resting in between! Big step!

Things continue to taste weird/bad and my tongue still feels yucky.

I will haveweekly blood checks this month at Smilow, then every other week in August and back to Dana Farber on September 3rd. Things still to be decided are if and what a consolidation treatment might be for me (possibly the RVD, revlimid, dexamethasone and velcade I started with back in January) and what my maintenance therapy might be (just revlimid?).

I am cleared to go to the wedding on August 15th in NYC and my vacation in Hampton Bays the first week in August. It is always inspirational to have things to look forward to!

P.S. Shout out to my friend Donna who weeded my front garden – woot woot!