It’s Been a While

It’s been a year since my stem cell transplant. The ‘birthday’ of my new cells was June 15th. And it’s been almost four months since I’ve posted.

The reason for not posting has been two-fold  – super busy work/life stuff and not much cancer stuff.

I squeezed in a quick jaunt to Costa Rica with my son Kyle and my mom. It was beautiful, fun and full of adventure (zip-lining, Tarzan-swinging, waterfall rappelling, hiking, kayaking and driving on the roads). Our good friends Erica, Stacey, Lisa and my sister Kirsten threw us a fabulous engagement party.


Two of Scot’s daughters graduated (Maia from college and Tess from high school) and we threw them a graduation party.


We went to two weddings, one in Philadelphia and one in Georgia.

And my photography business has started the season with a bang – two weekends of three shoots each.

So as far as the multiple myeloma goes my myeloma numbers have remained low and stable (yay!). However, the revlimid has been messing with me a bit. First some nausea (enough to get me out of bed in the middle of the night to take something) and low platelets caused them to stop the revlimid three days early. And then the next cycle (two weeks ago) my ANC was 0.5 so they didn’t give me any treatment so I had almost two weeks off.

Last week I went to Dana Farber and Dr. Munshi changed my revlimid does from 25 mg to 15 mg.

In a recent conversation I had with Dr. Seropian at Smilow I said that treating this “is an art not a science”. He corrected me and said  “a craft really, you create a product with an art”.  So there 🙂

Writing this today while at Smilow getting poked and prodded – Zometa infusion, 5 vaccines (each a separate intramuscular shot) and my velcade injection. Fun times!

And last but not least enjoying every second I get with Kensley.

Kensley

Last Thursday, March 3rd, my daughter gave birth to a beautiful baby girl, Kensley Sarah. And although I would have been equally happy had she given birth to a boy, there is something very special about the name they chose for their daughter. They chose a “K” name to honor Ken, my husband who passed away 4 years ago (see About Me), and not just any “K’ name, but one with his name in it. I love it. Additionally, they honored my family tradition, one that I think is very special as it is passed down through the women, giving the first born daughter the mother’s name as the middle name. It has gone thus: Elizabeth Mary, Barbara Elizabeth, Heather Barbara, Sarah Heather and now Kensley Sarah.

It was an arduous labor, but Sarah was a trooper and Demian steadfastly supported her. I was honored to be there to support her as well. Kensley was amazingly alert from the moment she was born – so much so I commented that she was nosy! Sarah is like an old pro at this mothering thing, relaxed and confident, caring and calm. I am equally in love with this baby as I am watching my daughter be a mother.

And now, just because indeed it is always something, a quick multiple myeloma update. When I went to Smilow for my velcade injection on Thursday my white blood count had dropped quite a bit (my ANC was 0.6). So They halted all treatment (did not get the injection and stopped taking the daily revlimid) until they check my blood work again next week. The upside is that I feel totally fine. The downsize is that I am at risk for getting an infection that would be difficult for me to fight off. And just a reminder that this is a long and winding road, this cancer thing.

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.

On ice

i went to work on Friday. Had a lovely lunch with a fellow “cancer buddy”. Then around 3:30 I started to feel cold. And by 3:50 I had to leave. I shuffled along to my parking garage, drove home, went straight upstairs and into bed. 

I had the chills, started piling on the blankets and my temperature started rising: 99.8, 100.8, 101.7, 102.7.  I called my local oncologist and they wanted me to be admitted. Maia drove me to the hospital and Kirsten met me there. 

The staff at Smilow met their “gold standard” of care in this situation by getting my blood cultures drawn and IV antibiotics going in under an hour. My fever did go as high as 102.9 at which time they brought in the ice bags. 

By 9:00 my fever seemed to go down as fast as it went up. Kirsten could tell as I went from laying there not talking at all to talking more and more and more!

They have kept me here and weaned me from IV antibiotics to oral and tried to get my nausea under control. I should go home this morning. 

I won’t be going back into the office this week. Turns out Friday was my last day there. I’ll stop in on my way home today and grab my laptop, etc. and hopefully be up to working from home this week. 

As always it takes a village. Sarah and Demian took Minka to the vet for me Saturday morning (something that had to be done prior to my SCT). Sounds simple, but not with Minka! She is a bit of an anxious pup and HATES the vet. She got out of her collar outside the vet (which is on Main St. in East Haven). They scrambled to corral her and Demian heroically, quick-thinking, and fleet of foot stopped traffic on Main St. so Minka wouldn’t kill herself!