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.

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.

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 +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 🙂

Day 0

Today I received some of my stem cells back (the rest are stored frozen for possible later use). It was pretty much a non-event. And I’d have to say that today I am pretty much a non-event myself!

I slept well last night with just one wake up for some nausea meds. But I was pretty nauseous upon waking for the day and ended up vomiting before anyone could get me anything, That said, they have added an additional anti-nausea medication to my arsenal, which is now up to 4, so it should be easier to manage going forward.  The rest of the day, I slept, and slept.

I am officially the worst person to visit in the hospital. Lisa has taken to sending selfies of herself with her mask on giving herself different occupations!

I did just get on the stationary bike for 12 minutes, so I’m not a complete waste of space. I am still kickin’.

Made of “Good Stuff”

Last week I had an appointment with my neurologist, because you know, I don’t go to enough doctor’s appointments!  Actually, I had to go because the stem cell harvesting process gives some people migraines, which I do get. Typically I handle my migraines with a combination of tylenol and advil. However I am currently not allowed to take advil, so off to the neurologist I went to get a prescription for migraine medicine, just in case. (Turns out I did not need it, I got a few headaches but no migraines.)

I have sen my neurologist on and off for over 25 years, she comes highly recommended from a doctor friend of mine, is Ivy League trained and I have always found her thorough and a very good clinician.  She is a little but, I don’t know, eccentric.

I had not seen her since being diagnosed with multiple myeloma, but she is the one who discovered my olfactory cortex meningioma (see Incidental Findings). So after a long review of my past and more recent medical history, a physical examination, etc. (everything neurologically is fine!). She sits across her desk and looks at me and says, “You know, you look really good.” I reply, “I know, everyone says that – nurses, medical assistants, doctors, specialists, attendings in the hospital, everyone.” She says, “I don’t think you know what they mean. Some people are made of bad stuff and they get sick and they look bad, but you’re sick and you look really good, you’re made of good stuff. I think you’ll be o.k.”

So after a not very technical evaluation, I guess that’s a good thing, I just might be made of good stuff, even though I have bad stuff going on.

My good stuff best be there for me as I approach the coming weeks. I have learned something recently, mostly talking to nurses (nurses are da’ bomb, by the way, so full of great information). The “stem cell transplant” is not actually the treatment for the cancer.  The treatment, to get rid of the cancer cells in my blood is the two days of high dose melphalan. This will “kill” both the bad cells in my blood as well as the good cells, hence the need for the stem cells. The stem cell portion of the treatment is actually called “peripheral stem cell rescue”. The stem cells come in to save the day and get your blood counts back into a normal range.

There are other side effects besides the low blood counts: nausea, vomiting (maybe for longer than the hospital stay), diarrhea, mucositis (sores along the digestive tract), heartburn espohagitis, risk of infection and fever.

This is the schedule:

Saturday, June 13th (afternoon or early evening: Admission to Brigham & Women’s Hospital
Sunday, June 14th (Day -2): First melphalan dose
Monday, June 15th (Day -1): Second melphalan dose
Tuesday, June 16th (Day 0): Stem cells reinfused

And then recovery in the hospital Days +1 through +14.

Days +6 through +10 are likely the days I will feel the worst.

Day +5 neupogen injections start and about a week later my white blood cell counts will start to climb as my stem cells mature.

Day +14 is my potential discharge date (June 30th). And then it is home where “the bulk of my recovery will take place” with diet restrictions for 30 days after discharge and infection control restrictions for 90 days after discharge.

Everyone’s side effects and recovery are different.

Here is to my “good stuff” doing it’s thing!

Short

Ken used to use a fair amount of army vernacular, partially from the year he spent in Germany teaching on a military base, but I think mostly from his dad. Some of these terms have stuck with me and I still use them. So we come to “short”, typically I am not short, not in stature and I try not to be financially, but right now I am “short” in the military sense, or really in reverse of the military sense. Soldiers who are “short” are almost at the end of their tour of duty. I, on the other hand, am short and feel like I am going into the military, or perhaps prison.

And no, it is not that bad, nor that long, neither my hospital stay nor my limitations when I get discharged. But I am feeling like scrambling to do the last few things I can do now that I won’t be able to do later like eating now what I will have to avoid soon.

I am feeling much better than when I was feverish last weekend, but feeling the effects of last week’s chemotherapy – very tired and some occasional nausea. It took me three days to have both the energy and the appetite to go to Ashley’s for ice cream – oh the trials and tribulations! 🙂

I have just two more days of working (from home). One more photo shoot to edit. Dinner out with my kids. And I’m trying to use as many of our fresh herbs as I can when we cook!

At any rate, I’m counting down, but I’m still kickin’!

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Dreams & Wishes

Disclosure: This post is probably not what you thought it was going to be.

Two things this week have tickled my funny bone.

A few weeks ago I went to the ophthalmologist, and although my distance vision is not perfect, I don’t need glasses if I don’t want them. (I had them a few years ago and found them more annoying then anything else and then I dove into the ocean with the prescription sunglasses on and misplaced the regular pair visiting friends in Orlando.) A couple of nights ago, close to morning I had a dream that someone came to my door and rang the bell. It was a tall, young, fairly good looking man (why I include this fact, I’m not sure, but it’s true) with glasses standing on my front porch. He was an eye doctor, apparently he was tracking me down so I would get glasses. His name was Dr. Seagoode.

Get it?  So apparently I am becoming Henny Youngman in my dreams! I dreamt the spelling and everything and then I woke up. I thought it was hysterical and laughed right away.  Still makes me laugh.  Dr. Seagoode…

The other thing is that Scot has taken to randomly rubbing my bald head to make a wish. This too makes me laugh every time.

He also thinks I should go out some time without any head covering, that I look beautiful. I did take my hat off today when we were sitting by the shore and on a dock, hoping to get some sun on my very white scalp. When we were on the dock there was a boat below us filled with people. And on the boat was a woman with a bald head (hers was evenly tanned, same as her face). A few minutes after I took off my hat I saw her frantically waving at my and smiling at me.  I waved and smiled back. Sisters in arms.

A million details and yet in some ways simplifying

Things are moving along full speed ahead for my stem cell transplant starting the end of this month.

Last week I spent a full day at Dana Farber for tests and “training”. They had already sent me a 3 inch binder full of instructions and materials, a powerpoint, a calendar and the dental package. But it was very informative because they pared it all down and clarified some important items.

First the tests: echo cardiogram, full skeletal survey (xrays, 18 of them), blood draw (19 vials!), pulmonary function test, EKG and my third bone marrow biopsy.  We were scheduled form 7:00 am until 5:00 pm.

The  training session was with the two nurses who are the stem cell transplant coordinators and another one with a social worker. They gave us details about what each step of the process would be like.  As I write this I am realizing I really need to listen to the appointment again (I record most of my appointments on my cell phone – thanks for the tip Laura!). But here are a few of the takeaways:

  • Minka does not need to leave the house when I am discharged from the hospital (the binder said your dog cannot sleep on your bed, and Minka sleeps under the covers!). The nurses clarified that she needs to be groomed, have flea & tick treatment and no face-kissing and I can’t kiss her feet (how did they know I kiss her feet!?!?!).
  • I learned how the neupogen shots I will be giving myself (2 per day) work. They stimulate your bone marrow to produce stem cells. Taking the shots daily for 10 days in a row causes one to produce so many stem cells that they start to sptill out of your bone marrow into your blood stream where they can be collected, I also learned that those overfull bones can be a bit painful.
  • Something I am going to be on (here is where I need to listen to the appointment again!) increases migraines, so I have to make a visit to yet another physician and see my neurologists for some migraine meds  because my current drugs of choice, two tylenol and two advil (thanks Lynn!), will not be available to me as I cannot have any NSAIDS.
  • I was told that I would have to stop drinking alcohol two weeks before the mobilization chemotherapy, and then that that was that day!  One of the nurses gave me that evening to drink my last drink (It could be 4-7 months before I can imbibe again). And I did, well, I had my last few, a little bit of everything, finishing with a Herradura Tequila on the rocks with lime.

herradura

There is more, but now I’ll move on to the schedule. Although I had a copy of the schedule sent to me I could not fully absorb it without the details they gave me. here are the highlights:

May 28: Full day of mobilization chemotherapy at Dana Farber. I will go home that night and plan in going to work the following day.
June 2: The last day I can physically go to work. After that they do not want me to risk getting sick and my counts will be down. I plan to work from home June 3-5.
June 8: Stem cell harvesting begins in the early morning hours at Dana Farber and will continue for anywhere from 2-5 days until they have harvested the 8 million stem cells they need (enough for two transplants, one for now and one in the bank). Harvesting is done outpatient, but are long boring days of being hooked up to machines. I will get to go home for at least a couple of nights afterwards.June 13: My inpatient stay at Brigham & Women’s starts.
June 14: This is called Day -2, first day of the chemotherapy for the stem cell transplant.
June15: Day -1, second day of chemotherapy.
June 16: DAY 0, I get my stem cells back.

And so on, until Day +14, June 30th, that is my “potential discharge date”.

At home I will have 30 days of food restrictions and 90 days of house restrictions. More details on those to follow.

But a quick touch on the simplifying. It is oddly freeing to not be able to make any plans, have no place to go, not need any new clothes, no trips to even consider planning.  Just treatment and healing for 4 months. I go through my inbox and delete all the sale emails, all the Groupons and Living Social deals (I won’t be able to go to restaurants), the Broadway Box offers, the Travelocity sales – delete, delete, delete.

I am counting down the days left that I have to dress for work (7!).

And I have download two different meditation apps to my phone – that I will have time for.