Why the words are so important

I had my appointment at Dana Farber this past Thursday. And I waited to post about it until I had time to listen to my recording of it. I knew it was positive. There were lots of “yays” and even hugs at the end. So when I was asked how it went I would say “it went well”. But with cancer, at least with my cancer, I am relying on numbers and then how those numbers are translated into words to know how I am doing. Because aside from effects of the numerous treatments I have had, I have no symptoms of my cancer.

So this morning I listened to the recording and wrote down some of the words.

  • With myeloma at this low level
  • Light chains are great
  • IgG is normal
  • Standard maintenance therapy is revlimid 3 weeks on and one week off, because of your genetics (this is the genetics of my multiple myeloma) we will also do velcade every other week
  • Shouldn’t cause more neuropathy
  • Side effects pretty minimal
  • The transplant achieved what we were hoping
  • Free light chains came down quite dramatically 400-500 to 20
  • Come back every 4 months then stretch it even beyond that
  • We are on cruise control now
  • Your myeloma is going to be gone. It’s almost pretty much gone. This (maintenance therapy) is to keep it away for years and years.
  • Your immune system is actually better than it was because the myeloma is not affecting it.

So there you have it, lots of positive words, along with “yays”, smiling faces, joking around and hugs.

I don’t know why, but I remain pretty neutral, not pessimistic, but not even cautiously optimistic. I feel like I’m from Missouri – show me. Show me I’m still cruising along a year from now, 2 years from now.

I guess, I don’t want to get too high, it makes the lows feel that much steeper.

Work, treatment, photography

So those are my reasons for not blogging. Or to clarify, I think it is a combination of the three: back to work in the office full-time, getting the consolidation treatment, and the prime season for my photography schedule – have all kept me from sitting at the computer and blogging. I’ve been tired, and any free time sitting at the computer at home, I should be editing photos.

Work has been good, you know, it’s work. It’s good to be back and seeing everyone on a daily basis, interacting with friends and colleagues (sometimes, every once in a while, they are both!). Everyone has been very gracious and kind. Examples of which are the in the photo above. Those are three “gifts” given to me in my first week back at the office.

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The first one, the mini blueberry muffins, are from someone I know very casually at work. We say “hi” when we pass in the hall or the break room, a nice guy, but a co-worker, not a friend. The day after I came back he swung by my office and quickly dropped the package on my desk and said “welcome back”. So sweet.

The flowers are from someone who has only worked here for about a year, we have worked on some projects together. A colleague.

The last item is from a friend, and also a colleague, someone I sometimes refer to as my “rabbi”. While I was out she had traveled to South Korea to visit her son and his young family., And while there she had this name stamp/talisman made for me, with my name (or the closest approximation, I think they do not have the “th” sound) with a healing message on it.

All of them, so kind and conpletely unexpected.

On Saturday night I finished the last of the “consolidation” treatment. My white blood count took a bit of a hit over the course of the two cycles. I had to get a neupogen shot at one point and then when it went down again they cut my dose of revlimid in half for the last week.

I’ve been tired. Sometimes very tired. With a few nights of very little sleep from the decadron. And the neuropathy in my feet has worsened, and I sometimes feel like I am starting to have a little bit of tingling in my fingers, this is from the velcade. It is the same treatment I had last January through March, but it seemed a little bit harder. Maybe it’s coming off the stem cell transplant. Maybe I baby-ed myself more last time. Maybe I don’t remember what it was like. Maybe I’m just getting old!

Well, it might also be the photography. I have not done as many shoots as I did last year. But I still have been doing 2-3 per weekend. So it is hours of driving, hours of shooting and hours and hours of editing. I’m looking forward to “the season” being over. But then again, I’m always looking forward to the photography season being over.

Next Thursday Lisa and I are off to Dana Farber for a follow-up visit with Dr. Munshi. I anticipate that he will firm up his plans for my maintenance therapy. I have already scheduled an appointment at Smilow with Dr. Seropian and a treatment appointment for the following week so hopefully ti will all go smoothly on this end.

And I am also hopeful that the maintenance therapy will not be too onerous. we shall see.

New Land Speed Record

i went to Smilow when the lab opened at 7 am to get my pre-treatment blood work and then went to work. 

I had a 12:30 appointment so I left my office around 12:15, 5 minute walk to my parking garage,  then drive and park at Smilow and check in on the 7th floor. The nurse took me in right away – weight, vitals and the usual questions (pain, neuropathy, bowels, etc. ). She had ordered the chemo when she saw my test results come through. I took the dexamethasone. She got a co-worker to “read” (safety double check to make sure the right person getting the right medication ) then the shot in the belly and I was out of there and back in my office in less than an hour!

I had Book Club in Redding tonight. Not the best planning on my part. I was tired. Couldn’t have any wine. Got leg cramps driving to and from. BUT it was really good to see everyone who made it and catch up. (We even talked about some books!)

Having trouble sleeping tonight, even with my “aids”. My legs are achy and I’m quite nauseous. 

But, only 6 more days this cycle and then a week off. 

Not proud

I am not proud, but I did manage to get Smilow to have me start treatment tomorrow (Monday). I did happen to cry on the phone after they told me they were having trouble getting me an appointment. Mind you, they didn’t call to tell me that, I had to call them. It was at the end of the call, and I couldn’t help myself, I had to say something. “You know, it isn’t stressful enough to have cancer, and then I have to deal with this.” That’s when I started to cry. And, no, I am not proud, but I also don’t think it should have to come to that. Within the hour I had a message saying that I was on the wait list for treatment on Monday (this was Wednesday).

So, good, I was on the wait list. I asked if they had started the process of ordering the revlimid. They had not, I have to have a pregnancy test first. I wrote back “If you put the order in I will go take the test.” Really?  You’ve known I was supposed to start this treatment for three full working days and you didn’t get this started? It has to be ordered from a specialty pharmacy and overnighted to me. They write back and say the blood test orders are in. I go and get the blood work done.

Thursday goes by. And then it is Friday afternoon. I have heard nothing, which at this point is no surprise. I have somewhat resigned myself to the fact that I will not be starting treatment. I send them a message saying I assume since I have not heard anything I will not be coming in. (They told me I was wait listed but never explained what that meant.) I get a message back “You are scheduled for 2:00.” Well, thanks for letting me know! I ask again if the revlimid has been ordered, the response “The Hcg isn’t ready yet, when it is we will order.”

So, I happen to have two revlimids left over, which I will start to take tomorrow night. And I don’t think much about it, and wasn’t sure what the Hcg was. I was actually mixing it up in my mind with another test. But then Saturday night I look it up, and of course it is the pregnancy test. They are saying that a pregnancy test that I took Wednesday afternoon is not resulted by Friday afternoon? That is crap.

This experience with Smilow is crap. I sometimes blame it on the fact that they are not acting as the lead for my treatment, but I am not entirely sure if that is the case. And now I am a little bit embarrassed to show up there tomorrow afternoon being the woman who cried on the phone last week, But maybe they should be the ones who are embarrassed.

Venting

Arrrgggghhhh…

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.

Consolidation and Maintenance

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 🙂

Day +7

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.

Day +5

Day +5 was a good day, although it started with a rough night prior. I woke up around 4 am sopping wet, assuming I had just had a terrible night sweat. It was not until I realized it was more moisture than would evaporate on its own that I hit the call button. As it turns out my fluid line had gotten disconnected. And then, after changing the bed and falling back to sleep I woke up with a migraine an hour later.

BUT, I had a nice visit with Kyle, neither of us needed a nap and I did not need any “coverage” anti nausea meds (I am getting two of them without requesting over the course of the day). I feel more like myself with more energy. I do understand that it may get worse again before it gets better. But I am also open to the possibility that it will continue to get better, or stabilize with a few bumps. Either way, I’ll get what I get and I won’t get upset (that works for 53 year olds as well as it does for three year olds).

My WBC is down to 0.22, which is considered fairly close to bottoming out. My hematocrit was low enough that I did need and received a unit of red blood cells. The nurse made sure to inform me and Kyle that this was prime stuff, from one donor, screened and irradiated, so more “good stuff” for me!

Anxious for Sarah to arrive tomorrow for a four day stay and not just because she is going to do my laundry.

Thanks to all the people who have hosted or will host me and my visitors here in Boston: Alison’s Aunt Maureen and Uncle Joe, Lisa’s friend ‘Grini, Ken’s cousin Herman and Marsha, Sarah’s friend Suzanne, Kyle’s friend Jane, and perhaps even an old school chum of mine Ellen (if it works out).

And lastly, a Happy Father’s Day to all you dads out there – I was sad to miss all three celebrations I would have gone to today, but delighted that a good time was had by all.

Day +3

Not much to report today:

  • :I am more tired.
  • Nausea probably not as well managed today as yesterday, but no puking.
  • Kyle left this afternoon and Scot comes tomorrow morning.
  • I’ve lost 13 lbs.
  • I am a little worried about becoming deconditioned, as I am more and more fatigued and up to doing less and less. But I did get out  there and walk a bit this evening and got on the bike yesterday evening.
  • WBC (white blood count) down to 0.41, platelets and RBC lowered slightly but no need for any transfusions.

The photo is of the beautiful silk arrangement Jane brought me yesterday.

Day +2

Day +2 was marked by the changing of the guard, Lisa finished her 3 day tour of duty and left last night while Kyle was driving up. I’ll miss Lisa’s ever present smile and silliness. I was surprised when two of Kyle’s best “girl” friends, Jane and Toni, arrived with Kyle early this morning. It was great to see them both and Jane brought me a beautiful floral arrangement, she is a nurse and knew that it could not be live flowers. It was wonderful to have their energy in the room.

I worked hard and broke my streak, no puking! Nibbled some crackers when needed. The day is not over but getting through the morning was key.

The mighty melphalan is doing it’s thing, my white blood count dropped to 0.64. Which means two things, I can’t go to the shower in the hallway any more and I am more fatigued. It’s a weird feeling to be laying in bed and feel like lifting your phone up to look at it is an effort. But, generally speaking I feel pretty good. And I suppose a third thing – kicking the multiple myeloma’s butt!

And it was nice to have a napping partner this afternoon, we took a good 2 hours snooze after watching some Game of Thrones. To his credit, when he heard me move he jumped awake and said “Are you o,k,?” – he’ll make a good dad some day 🙂