I have been a very bad blogger of late. What with a baby shower for my daughter, a week in Naples, FL with good friends, waiting for a baby to arrive, my sister’s 50th birthday, working, maintenance therapy, dealing with this mop of hair growing on the top of my head, and did I say waiting for a baby to be born!?!
Well, today is the due date and we are still waiting. My daughter wants to have a natural childbirth so we are hoping this starts moving along in the next few days so we can stop worrying about induction. Did I say “we”? Well, as her birth doula, I am worried about this too!
Two weeks ago I went to Dana Farber to see Dr. Munshi, I had not been since October. He took a while fumbling with the electronic health record, but after going back and forth he finally said, “We would say you had VGPR.” I knew what this meant and it was what I was expecting, but my friend Alison was perplexed., “What is VGPR?”Well, VGPR is a Very Good Partial Response. My m-spike decreased by at least 90% thus meeting the definition. So I did not have a complete response (or what some people might call remission), but I had a very good partial response. And my numbers could continue to stay where there are today for a long time and they cold also continue to go down a bit with the leftover effects of the melphalan (from the stem cell transplant) and the maintenance therapy that I continue. But as there is no “cure” at some point I will likely relapse, but there are lots of options (read:drugs) out therefor the treatment of multiple myeloma and so far I have only tried a handful, and those can also be revisited.
Here is the clearest information I could find about VGPR: “Based on their results, researchers concluded that achieving very good partial response should serve as a major treatment goal for patients and their physicians – not only does it correlate with better short- and long-term event-free and overall survival, but it also encapsulates a larger population of patients than complete response.” So VGPR, a fancy acronym for “you done good, doing great doesn’t happen very often, now stay there”.
I will try and be a better blogger, (I still have the story of my hair to write) but who knows what will happen after this grandchild is born!
(I haven’t been blogging much lately for two reasons. One, there isn’t much to say; that is there isn’t much going on in my multiple myeloma world. Two, I’ve been very busy with everything else – a hectic fall photography season and the holidays. So two “good” reasons.)
So this past year has been, well, huge. Just a few days over a year ago I told my kids and my family and friends that I have multiple myeloma. A year ago on January 5th I started treatment. I got the flu. I had a weekend hospitalization with a neutropenic fever. My daughter got married. I was hospitalized for 5 days for DCEP treatment. I bought a wig. I lost my hair. I had a stem cell transplant. My daughter got pregnant. I went back to work. My son got a dog. I had a busy fall season of photography shoots and editing. My hair started to grow back. I started maintenance therapy. And then the holidays.
The coming year is already chock full of things to look forward to:
- Sarah’s baby shower
- A trip to Naples, FL, staying with Dennis and Ruth Ellen and vising many others
- The birth of my grandchild (sex currently unknown)
- Graduation of two of Scot’s daughter’s (Maia (college) and Tess (high school)
- A cousin’s daughter’s wedding in GA
- Another week in the Hamptons
- Our wedding (Scot and I)
And the ongoing maintenance therapy. And hopefully that is all on the myeloma front.
And of course the ongoing hair saga. More on that later.
As I wrap up this past year I want to thank everyone again for their love and support. You are my strength.
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.
I sent a message (via MyChart) to Dr.Seropian’s office early Friday morning to start the process to schedule my consolidation chemotherapy treatment. I knew I wouldn’t be able to start this week, but figured next week would not be a problem. I also called to cover my bases. I received a call back from someone in the office who said they would call me as soon as they figured out the best time for me to be seen. Fine.
End of the day Friday, nothing.
And then the long weekend. And yesterday (Tuesday) I’m back to work and although I had a dream Monday night that they couldn’t see me until November (love those anxiety riddled dreams) I forgot about it until 5:00 p.m. when I realized I hadn’t heard anything. I called, even though it was after hours, so I cold at least leave a message. I spoke to someone in the office who said she would get the message to someone right away and they would get back to me as soon as possible. I thanked her and even said I didn’t expect a call back that day and tomorrow would be fine.
I just realized it is 10:00 – and still nothing 😦
Just sent another message (the nurse who responds to the messages is very efficient and quick to respond, although she is not the one who schedules).
When the medical system causes more stress than the disease and the treatment – there is something wrong with the system.
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.
All settled into the room. I ended up in one of the three rooms here without a shower. This means I have to put a mask and gloves on (which I have to do whenever I leave my room) and actually leave the unit and walk into a public hallway to get to a shower. I was warned that this might happen and was advised to request a room change, which I did. I am number three on the list for the three rooms. It’s not so bad for right now, but will get old over time.
The staff here is great. I feel very well cared for. This floor is exclusively for stem cell/bone marrow transplant patients. It’s all they do here and it shows. My overnight nurse told me her other patient flew here to get treatment from Dubai!
The food is almost comical starting with the photo above. That is last night’s dinner, Chili con Carne with cornbread, both very tasty. But I took the photo, adding the tiny packet of butter for perspective. It was the tiniest serving of cornbread I have ever seen! I had requested butter as a condiment and they sent three packets – there was literally more butter than cornbread!
I also ordered a banana, knowing that when I go home I can have thick skinned fruits, but the answer was no. Watermelon? No. Cantaloupe? No. So canned peaches it was.
For breakfast, I asked for Raisin Bran, no, no dried fruit (I forgot). So I went with Cream of Rice. Brown sugar? No. (I have no idea why.)
Lunch, turkey breast and provolone on a whole wheat wrap? No cold cuts. Ok, tuna and provolone? No to the cheese (I think maybe because it is sliced like a cold cut?). Ok, just tuna. And so it goes. Their mashed sweet potatoes and their butternut squash are both good and decent portions. I think I’ll end up looking slightly orange by the time I get home like a baby who only likes the mashed carrots and sweet potato baby foods!
I received my first dose of melphalan. I had to suck on ice for two hours and 15 minutes in order to avoid mouth sores. It’s amazing what you can do when properly motivated! Upside to that was no hot flashes during the ice sucking or for several hours afterwards (bonus!). They gave me prophylactic anti-nausea meds and so far so good there as well.
I walked in the unit twice for twenty minutes and they put in an order for a stationary bike for the room, waiting on PT for that.
I ended up with a grand total of slightly more than 10 million stem cells collected.
They have sent me home where I’ll rest up for the upcoming treatment (I get admitted this Saturday). The additional specific instructions are “to eat all the salad, raw fruits & vegetables and raw fish I can!” It will be almost two months before I can have those again and one year for the raw fish.
I have been feeling, well, I’ve been feeling like myself (yay!) since Monday. I’ve worked out every morning (modified a bit) this week (yay me!). And today when I went for my blood work all of the key blood component numbers are trending up and I am no longer neutropenic. So, while I still can’t shave my legs (low platelets), and I should maybe be feeling tired, which I’m not (low red blood cells), I can garden again and eat sushi if I so choose.
I am feeling very excited by the news. My body is recovering well from the treatment (or tolerating it well as the doctors like to say) even if I do not know yet how well the treatment worked, a couple weeks yet for that.
I have taken to warning whichever nurse is drawing my blood that I did pass out last week, you know, just in case… The nurse today was shocked, she said, “I would never think that Heather would pass out!” – so there’s that!