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.
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 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!
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.
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 🙂