Overwhelmed

This post is going to be quite the juxtaposition from the last. I am still feeling okay and getting good care here at Dana Farber. But, starting late in the day on Friday it felt like a lot was coming at me all at once.

It started with a call from the visiting nurse company assigned to deliver the supplies and give me the instruction for me to flush my PICC line myself every day at home. I really am fine doing that, I’ve seen it done again and again in the hospital.  The problem was the woman on the phone. She was irritated with an end of the day on a Friday request for service on Monday. Plus I work, which is an inconvenience for them. And then she needed to know which doctor would sign the nursing plan. I gave her my list of doctors but I did not (and do not) know who will sign off on the plan. I finally got to the point where I asked her if I should not leave the hospital with the PICC line in – she was giving me no confidence that she could get everything done for me on Monday. She then backed down a little bit, but basically insisted on leaving it open and me with some doubt.

Shortly after that I checked my email and I had received the calendar and more information in preparation for the stem cell transplant.  There were some surprises in there for sure. A whole packet of information regarding dental evaluation and treatment that needs to be done before the transplant. Stressful for me because a.) I am in between dentists and b.) I am trying to not miss so much work.

And then there are all the details of the SCT and how much time I will be away from home (it is looking like a little over 3 weeks, if all goes well). Never mind the side effects of the treatment and transplant itsself.

And then there are all of the restrictions after discharge once I am home. And how long they last.

And I have to get a wig.

Oy. It will be okay. As a few wise people have reminded me in the last day, one ting at a time, one day at a time, one moment at a time.

I was talking to Sarah today and I started to “be concerned” about not being able to bring my own toiletries for my stem cell admission and what would my hair look like without my bevy of hair products, and then, we remembered – I won’t have any hair!

Next

So, the new regimen also did not exactly do it’s job, so Dr. Munshi at Dana Farber has prescribed a different treatment, CDEP, Dexamethasone, Cyclophosphamide, Etoposide, Platinum (Cisplatin). The four drugs are given in combination over four days, dexamathesaone in a pill and the other 3 via a slow, constant infusion as an inpatient. I am going to Boston late morning tomorrow and will be admitted to Brigham and Women’s (across the street from Dana Farber, where they do all of their inpatient treatment).I should be discharged on Saturday. My understanding is that I will mostly be bored (maybe I’ll blog!). The following week I may not feel great as my blood counts will likely be very low. I will be watched by my doctor here at Smilow and may need transfusions and/or the support of neulasta (again).
And the following week, I may lose my hair – eek. There will at least be thinning – which I can well afford, as long as it isn’t in a big clump right on my forehead!  But, I am mentally preparing to lose it all. And even if not from this treatment then certainly from the stem cell transplant that this treatment is preparing me for, which will likely be in about 8 weeks or so.
Aside from total vanity, losing my hair means that the world will know I have cancer.  Although it is not a secret, I am not “out” at work, nor on Facebook. I just don’t want any pity parties!
The other problem with losing my hair is covering my head, my huge, gigantic head. I did some rough measuring and from my calculations I am just on the outside of the largest size in women’s wigs. I already know my head is too big for women’s hats. So, it shall be interesting…
The best suggestion so far came from my friend Michael, and I quote,”more cleavage”  Yes, there is always that. It reminds me of that old W.C. Fields quote that Ken use to repeat (often),

“If you can’t dazzle them with brilliance, baffle them with bullshit.”

or cleavage, same thing…

Cycle #4

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Lily pads at the Victoria Falls Hotel, Zimbabwe

I started my 4th cycle of revimid/velcae/dexamethasone this morning. My doctor at Smilow would like to see me making quicker progress and would like to add a 4th drug. My doctor at Dana Farber is pleased with my progress and does not want to make any changes at this point. When I spoke to the APRN at Dana Farber late last week she actually said that sometimes with a very quick response there is also a faster relapse, that sometimes a slower, steady response is better. “Sort of like when you lose weight too fast and then gain it all back”, she said. I am happy with Dana Farber’s plan. I have virtually complete trust in them, they are the experts, this is all that they do.

My mom accompanied me to my appointment this morning (for the first time). We had a very long wait in the exam room after seeing the fellow, waiting for the doctor. I finally said to her “You know Mom, if you want to have cancer you need to be more patient than this!”

I did have the flu (influenza A) for about two weeks. So there’s another good thing about cancer, if I had the flu and did not have cancer, I probably would have never known I had the flu, I would have not gotten the rest I needed and I would have just kept pushing myself and wondering why the heck I couldn’t get over this terrible cold – so there’s that.

Now I have two weeks of treatment and then the off week leading up to my daughter’s wedding, which is perfect.  Lots to do, exciting stuff, can’t wait to see my baby girl get married and visit with family and friends from near and far.

(micro) Managing

One of the things I have struggled with since being diagnosed is my, what some might call, my control issues. (Think the National Car Rental commercial “I’m not a control freak, more of a control enthusiast.”). Once you become a patient you do lose a lot of control, not all, but a lot. I admit, that where I can, when dealing with my personal things I do like to try and take control. (I can literally hear those that know me well making all kinds of snide and sarcastic comments – it’s o.k. I can take it!)

Managing my time off from work is one of those areas that I have tried to take control. From my perspective I should be able to do it and I need to do it. Let me preface by saying that my boss and workplace are very understanding about my condition and situation, unequivocally great. Additionally, my place of work gives a very generous sick  and paid time off benefit. However, when my husband was sick and dying I used all of my accumulated sick time. So 3 years ago I was starting at ground zero. Work is flexible and I typically arrive at work 30-45 minutes early. When I take a half day to go to Boston for treatment I check email and respond where I can even if I can’t actually “produce” any work. I try to be fair, sometimes more than fair, I am good with that, I rest easier if I do it that way. Which brings us to treatment days (days 1,4,8 and 11 in a 21 day cycle).

My actual treatment, including have two nurses check and cross-check the drug takes less than 5 minutes.  The give me 4 small pills of dexamethasone (decadron) and then give me an injection in the fat of my lower belly.  I don’t have to wait after that,  I can just walk out.  Simple, right?

Here’s the thing that I try to do.  I try to beat the system. I have an 8:30 am treatment appointment, the lab opens at 7:00 am. I figure I’ll quick get the blood work and then go to work for a bit and come back for treatment. I arrive at the lab at 6:50 am.  Surprise – I am not the only one with this idea, there is a line and they aren’t even open yet. Foiled! I now go to the lab right in my town at 7:00 on my way into work.

I arrive early for my treatment appointments. I am ever hopeful. But – the drug hasn’t been ordered, have to wait for MD to approve a slightly low blood count, they didn’t mix the drug because of the snow storm they didn’t know who would show up, the drug hasn’t been mixed (no explanation), etc. Suffice it to say, it’s always something.

I am not, by nature, a patient person (again I hear the guffaws). I do try to be reasonable. When I am scheduled to see a doctor for an appointment, particularly an oncologist, I have learned that you often have to wait, however you are never rushed out of an appointment. The doctor will take all the time he/she and you need.  So you wait, but then the time is yours until you are completely done. And when I arrive at 7:20 for a 7:30 appointment I truly do not start to get irritated until 8:10. Because by 8:10 I know that I will not get to work on time. Does my boss care if I arrive 15, 20 or 30 minutes late?  Not at all. But I do. Partially because I am working so gosh darn hard to get there on time! And I know that stress and anxiety is not good for me, not good for my body, my immune system.  Maybe once I learn to meditate (on my list) I can make better use of that waiting time.IMG_9610

This morning, I arrived (with a terrible cold) at 7:20 for my 7:30 appointment. One of the nurses comes out and starts chatting with a patient who she has befriended who she does not have today. Picture me sitting there, and all I can think, as she is chatting away, is if she is MY nurse!!@$#@$!! She wasn’t. Then the medical assistance arrives, she is the sweet older woman, perfectly lovely and efficient. She greets the receptionist and the receptionist starts telling her that some friend of hers, or her friend’s sister or something (breaking every HIPAA regulation there is!) was hospitalized, blah, blah, blah, blah, blah… She finally takes three of us back to be weighed (you get weighed before every treatment and at every visit) and she tells me the nurse I have – score! – the smart, nice, super efficient and very thorough one. I go to my room and wait. The MA does my vitals (I’ll have you know with all this impatience etc. my blood pressure 118/72 – I credited all of my swearing, an excellent release). Then the nurse stops in.  She just stops in because she forgot her badge at home this morning, but her husband is meeting her in front of the hospital to give it to her, because he is awesome like that, and then she is going to do this other woman’s blood draw, it’s really quick, buy my velcade is there and my blood work looks great.

It just goes to show you, it’s always something.

P.S. Got to work at 8:51.

Treatment

In December my doctor at Dana Farber said it was time to start treating my disease. The treatment is a 3-week cycle. I need to go to get a subcutaneous injection of a chemotherapy drug, velcade, on days 1, 4, 8 and 11, along with a dose of dexamethasone (a steroid) and I take a pill every evening for days 1-14 of revlimid and then i get 7 days off.  Because of the frequency of the treatment it was decided that I would get my treatment at Smilow (Yale New Haven).  How the relationship between my treating doctor at Smilow and my primary doctor at Dana Farber will work has been a little bit stressful. No one was very clear as to precisely what the parameter were.

I started treatment at Smilow on January 5th.  It was a scramble to start it that day, and it was the day I “needed” it to start. The timing starting that date worked best for my daughter’s wedding and for my February trip to Florida.  Fortunately we got it done.

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I am halfway through the third cycle now.  Side effects are nothing terrible and are mostly predictable.Day 1 is a weird combination of the stimulating effect of the steroid coupled with the flu-ish and tired feeling from the chemo drugs. Day 2 is usually a good day (even if I don;t sleep much the night of Day 1 from the steroids), Day 3 I am really tired and then it repeats.

I didn’t realize the subtle ways that the treatment affected me until my first “off week” when I woke up the first morning “drug free” and immediately thought, “this is just me, I feel like myself”.

On top of the chemo regimen I now also take acyclovir (antiviral medication) twice a day, every day even my off week, an aspirin to prevent blood clots, a multivitamin, and a variety of things to help with the nagging side effect of constipation. So, I have gone from being so proud of being middle-aged and on no medications, to having a medicine cabinet full of drugs I take every day.

I also have some neuropathy in my feet (a common side effect) and irritation at the velcade inject site (the administer it in your belly fat – lovely!).

So nothing onerous, haven’t missed any work (except for appointment time), just try to schedule events appropriately, avoiding my really tired days – definitely do-able.