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”.

Balls!

I went to work yesterday, in my office, for the first time in 3 and a half months. It was good to be back. And only two people made me cry with their kindness and sympathies – not bad!

But the line of the day goes to someone I don’t know well. When I walked by her in the lounge she said, “Your hair looks great! That takes a lot of balls!” Well, yes, yes it does. 

Getting my second treatment this morning. I’m a little tired. A little cranky. A little queasy at times. A little achy at times. 

Not Since May 29th

I am going back to work tomorrow, in my office, where I haven’t been since May 29th. That’s a long time. I worked from home some days before I started the stem sell transplant. And I’ve been working from home full time since August 24th. But I’ve been home here, for a long time (save the time at Brigham and Women’s for the stem cell transplant). A long ass time.

So, up a little earlier tomorrow. Put on some “real” clothes. Coffee in a travel mug. The Q Bridge commute. Walking from the parking garage to my office (glad it isn’t calling for rain). And then seeing all my work “peeps”. It’s been a long time. Did I say that already? You know, there aren’t that many people in your life you see 5 days out of 7, week in and week out. Only those you live with and those you work with. So many of them have been incredibly supportive, I am truly blessed.

I didn’t share my illness with everyone I work with (there are over 400 people in my building and because of the work I do I see probably 75% of them in a week). My wig was pretty darn good and didn’t give me away. (Although I suppose in retrospect, when I disappeared after that Friday in May, people said “Aha!”). So going back to a chorus of “how are you feeling?” and “I didn’t know.” and “I’m so sorry” etc. is not something I am looking forward to. But, I’ve been through this before as I did not share Ken’s illness with many people at work and it wasn’t until after he died that people knew what was going on.

I am looking forward to seeing everyone, especially the people in my department. I’ve been told it is very quiet without me there – ha! I bring the noise!

So no wig tomorrow, just my new short do, which a nurse yesterday at Smilow told me looked liked Charlize Theron, to which I replied, not Brittney Spears? At any rate, I will take me less time to get ready in the morning!

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 🙂