During my visit to Dana Farber yesterday Dr. Munshi determined what is next for me. I will start with 2 cycles of RVD (revlimid, velcade and dexamethasone) for my consolidation therapy. This is the same chemotherapy I started with back in January 2015. I will get velcade injections and dexamethasone twice a week, two weeks on and one week off, with revlimid (pill) every day for the two weeks on. For my maintenance therapy he is recommending velcade (injections every other week) and revlimid (I am not clear on how often, I know it is a lower dose). The maintenance therapy is ongoing, as long as it keeps working and I do not experience adverse side effects.
They ran blood work, including the serum electropheresis which shows my M-spike, a key multiple myeloma indicator, the results of which are not in yet. Smilow ran it a few weeks ago and it was down to 0.8, which is good, but not 0. Dr. Muhshi and Tina Flaherty (the APRN) said that the melphalan (the chemotherapy I had prior to the rescue stem cell transplant) keeps working for 6 months sometimes even longer, that and the consolidation therapy should help to push that number down further. They also told stories of patients who never get to 0 but hover under 1 for years and years.
So that’s where I stand and what I will be doing. I’m slowly remembering what the treatment was like for me last winter. Not terrible, not fabulous. Some sleepless nights, some tired days after sleepless nights, feeling a little bit off, constipation, some queasiness, some shakiness and then feeling normal again on the week off. And it’s only 2 cycles. I got this.
Lisa took me to Boston yesterday and we laughed and giggled our way through. When we were waiting in the exam room I was explaining and demonstrating how lunges were still hard for me, and it’s all about the balance and how I need to look ahead at something stationary. I was looking at her, so of course she proceeded to waive her arms and move all around. All this while Dr. Munshi and Tina happened to be walking by the room on their way to another patient. Apparently, we were a bit loud, they said “We’ll join the party in a minute.” They mentioned later it sounded like we had 10 people in the room – nope, just me and Lisa! It was actually a fun trip. And I wore the mask and gloves for the last time when we were in the clinic, which I whined about. Lisa got a big kick out of this, ‘After all you’ve been through without a complaint, this you’re whining about?” Everyone has their limits 🙂
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.
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 seem to be following the expected trajectory of this treatment. Days 6-10 were slated to be the nadir (the lowest point) of the treatment in terms of numbers and that is where I am at now.
On the multiple myeloma forums it was recommended over and over again to pack extra undies when you go in for a SCT, now I know why. And the fatigue is quite debilitating, bathing today required 3 rest periods.
The doctor on rounds this morning said I’d have three or four days like this, then I would feel better and then my numbers would start to climb and then I could go home. I am going to assume he was counting today since he said it at 9 am, right? 🙂
My numbers continue to plummet, as expected (WBC 0.03, platelets 24 and hematocrit 24.7, up a little, but I have had red blood cell transfusion both Sunday and Monday). But not my spirits! Oddly, the time is going by fairly quickly. I am already past the half way mark. I get emails and texts, cards in the mail, I’ve listened to a couple of podcasts, watching a lot of Food Network, Face timing with Scot, getting videos from Tyler of Minka – the time passes. Plus, I take lots of naps.
So this morning was not as good as I had hoped.
Woke up to another migraine at 4am and then shortly before noon I experienced the worst 30 minutes I have had so far. And 30 minutes may not seem like a long time unless it is happening to you. The lovely list of incidents included: stomach cramps, diarrhea, and vomiting.
Aren’t you glad you came to read my blog today?
After IV anti-nausea meds and a two hour nap I have been feeling better; I even took a walk!
Sarah has arrived and is actually typing as I dictate.
One day at a time, one day at a time.