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”.

Day 0

Today I received some of my stem cells back (the rest are stored frozen for possible later use). It was pretty much a non-event. And I’d have to say that today I am pretty much a non-event myself!

I slept well last night with just one wake up for some nausea meds. But I was pretty nauseous upon waking for the day and ended up vomiting before anyone could get me anything, That said, they have added an additional anti-nausea medication to my arsenal, which is now up to 4, so it should be easier to manage going forward.  The rest of the day, I slept, and slept.

I am officially the worst person to visit in the hospital. Lisa has taken to sending selfies of herself with her mask on giving herself different occupations!

I did just get on the stationary bike for 12 minutes, so I’m not a complete waste of space. I am still kickin’.

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.