Thursday, April 27, 2006

Managing the Moments (Originally written 4/9/2006)

The Medical Stuff

A month ago, just about, I found out that I had a “mass” on my left ovary. The time since then is a blur of doctor visits, multiple co-pays to doctors, radiologists, labs, clinics and the like. None are large, those bills come later. My pharmacist associate at the super market (Courtney) and I are on a first name basis now. She is a babe, under other circumstances……I digress.

So, the quicker fast forward is to simply say that I had, as many of you already know, surgery on the 16th of March, which they did laprascopically, a method that is less invasive of the body overall and has much faster healing (through two small incisions on the belly and via the belly button). The “frozen section” pathology, done during the surgery, was encouraging, and after removal of many internal parts (which I will simply refer to as “girl parts” for the squeamish), I left the hospital with a pretty optimistic prognosis the next day. I never even got a bowl of Jell-O.

I do want to comment about the folks at Duke, who were mostly quite nice and worked well with me and as a team. Except when listening to what I wanted for pain. I asked for Vicodin, which has worked for me in the past, and I tend to take one or two and be done with it. Instead, they offered up Oxy-contin which I recalled hearing about as a new “street drug” on 20/20 or something. Why, I don’t know. They make me sick to my stomach nearly immediately and I rejected all further offerings. I got something else instead, but ended up with lots of Ibuprofen, which is both cheaper and less likely to make me unable to drive.

My sister and dear friend Barbara were home with me for a few days post op and got me through all the recovery, which was actually mostly uneventful. Jamie visited every other day with Sofie. And I prepared to go to a development conference in Las Vegas the following Sunday through Thursday. I left without fanfare on Sunday and returned home Thursday PM, going was totally the right thing to do! And the Kinsey Sicks were at the Hilton, I got to visit with Ben and Irwin. Thanks to Tracey and Sharon, who were, as Sofie called them “the visiting mommies” and moved into my house to care for her for the work week.

Then the pathology report came and things shifted a bit. The “borderline” tumor that you all heard about from Barbara and Nancy (found on frozen pathology at the surgery) was not the final report. Tumors of all sorts have to be “staged”. I have what would be called a Stage 1c Ovarian tumor, graded as such due to the fact that the damn thing burst several days prior to surgery. All other organs were negative for cancer, but this is still more serious than it was if it had not burst. But it did. And so I got more info on the path report (and later, at clinic, from my doctor and nurse, who are pretty cool folks) and found out it ago gets “graded”. I have a Grade 2 tumor, which refers to how organized the cancer cells are. Mine are pretty organized (not as good) but the thing with Ovarian cancer is that most women don’t even find out about it until Stage lll or even IV, which reduces overall chances of survival considerably (although some women do survive Stage III after treatment.

Getting to the point: this means that I have to have chemotherapy, and they wanted it to start soon (meaning next week) and it will be a biggie. The first thoughts I had were not about hair, but about vomiting, which I truly hate more than most things. Interestingly, in a moment I think of as “anticipatory nausea” I got a bit of stomach flu last Saturday. Sofie had been up all night with an ear infection, I had not slept much and woke up feeling punk. On the way to her doctor appointment, I puked my guts out on the ground right near the car. Sofie was totally appalled and proceeded to tell pretty much everyone she saw all day (including strangers at a restaurant) that “My mom threw up stuff that looked like hot dogs on the ground…Eeeeew, GROSS”.

So, as you can see, vomiting is not a popular activity in our household. I realized later that day that since her adoption in April 2002, Sofie has *never* thrown up on my watch or at all from what I know. Pretty amazing. I for sure have jinxed this now, but it was a nice ride.

Last Friday, I went to the Morris Clinic (the cancer clinic at Duke) for my pre-chemo work up. Delma, a friend who is a cancer nurse at UNC came along, incognito, to the appointment. I was very glad she did. Right from the start. I was put in a room and given a sheet/drape and asked to undress. Out of habit, perhaps, I started to unbutton my blouse. Delma gently reminded me that they had no interest in my top parts, just to take off my pants! Good thing she was there, saving me the embarrassment of being totally naked for the appointment!

About the Hair Issue

After a lot of explaining about the side effects (they have to list all of them) and what they as a team could do for me to help, I got a “goodies bag” for patients who are starting chemo. From drug reps of course, but this am I read through all the materials. Mostly quite helpful, but I couldn’t help but wonder, why do the pamphlets have all those pictures of lovely looking people, *with hair and eyebrows* ????? They have caught up with the PC notion of having them all be racially/ethnically diverse, and of different ages, but why not actually show a person not from a stock photo but with actual hair loss? Does GSK or Amgen think I might say “hey, no thanks, I read the booklet and I did not like the way that woman on page 39 looked, so I will skip the treatment, thanks anyway”. Not likely.

So, camera shy as I am, I plan to have some photos taken of this journey. I don’t know that I will send them out with these updates or the blog if I ever get that actually set up (I plan to really try), but I want to record all of this. Make it real.

During the days that followed this appointment, I had a couple of moments of sadness and tears, once when I realized that “hair loss” meant all hair, including eyebrows. That moment of tears while driving to work on Monday morning, gave birth the subject line of the email, which will probably be the ongoing title: Managing the Moments. Because that is, of course, what a lot of this will be about. The tears resolved, I reached out to a dear friend to share that moment went on with my day.

Jamie and I discussed how to tell Sofie more about what is going on with me with her therapist whom we see from time to time. Jane was her usual helpful self and also suggested some good ideas for me, about stocking up on anti-depressants, just in case, and also preparing for the (inevitable) hair loss on my head. The essential messaging here has been along the lines of “Mommy will have to take some strong medicine for that bump in her tummy, to make sure it won’t come back. The medicine might make her sick so she might throw up sometimes or it might make her more tired. And guess what! Mommy’s hair is going to fall out of her head, just like the cat hair. But she is going to get pretend hair for a while”. Along those lines. Sofie has managed absorbing this gracefully and only reacted to the idea of my vomiting again (eeeeew, disgusting).

One piece of advice that was consistent and made sense, was to get the wig before the hair loss happens (which is 10 days to two weeks after the first treatment). I tried first to simply Google wigs cancer Durham NC. But most of the hits were either closed or were not specific to chemo induced hair loss. So again, with a referral from Delma, who knows about these things, I went to “Lovely Lady” boutique on Saturday am, and met Darlene, a wonderful woman who is a wealth of experience, 30 years, of dealing with women on chemo. I also met another woman there, about my age, undergoing treatment for breast cancer. We swapped experiences and honestly, if I had met her at Whole Foods instead of the wig room, I would not have thought she was wearing a wig at all.

Darlene wasted no time in assessing my hair color and measuring my head and brought out a wig for me to try that is a pretty darn good color match (to the “color enhanced” version of my hair) and popped it on. When styled (that happens on the next visit) it should suffice for the short haul. I know those of you who watched “Sex and the City” all remember that Samantha moment when in the middle of a surgically induced hot flash, she yanked off her wig. Well, rest assured I have no such plans in mind. Not a promise, mind you, but no plans.

In about ten days, I will go back to Darlene, she offered to do the buzz cut. I graciously accepted and will, as mentioned, try to get some photos. The wig will be styled to suit me and I will be off to the world of bald.

Sofie expressed interested in watching me get my hair cut off, so she is likely going to come to that appointment with me and see me kind of bald (very short stubble). How many 5.5 year olds have that to talk about in show and tell?

After we agreed on “my” wig, which was presented to me on a little Styrofoam wig head, I played around with the other ones in the store. It was just too tempting. I tried on a hooker looking blond number, a black art student cool looking one, a couple that looked like Suzanne Pleshette in the 70’s and so on It was fun, and convinced me that this was not the time to experiment with another color or style. I want to just kind of pass in the hair department. Now, I will have to work on learning how to “draw” eyebrows. I thought for a brief moment of having them permanently tattooed on, but then panicked: what if they grew back in a different place and for the rest of my days, I had to wax the “real” ones off to keep from looking like a Ringling Brothers clown? Not willing to go there.

For hot days, they advise ditching the wig altogether and wearing head scarves. I have never ever been good with scarves, so I will need coaching here. And their assortment was not to my tastes, either. I asked Darlene if she ever got ones that were less “Amish” (with apologies, no insults meant here), they only had ones with little floral patterns in dark colors at the store. She assured me they were getting more in that I would like. So I hope so, because when we are sweating it out in Disneyworld over Memorial Day weekend, I would like not to resemble the fashion style of Wife Number Two on “Big Love”. (Those of you without HBO, look it up). I will even have a little cozy hat to wear at bedtime, if needed.

So, after bringing the wig home, I decided to name it/her since “the wig” sounds so impersonal. And I will be having a long relationship with this piece of synthetic hair…at least five months or so, possibly longer, until my hair starts to really grow out. Her name is now officially Dee Dee. My alter ego? Not quite sure, but I will be getting a lot of practice with her.

So, before I close this long report, I have to say that one of the more disheartening things I heard this past week about chemo was that it does not always mean weight loss. That really affected me, if I cannot even lose weight while having chemotherapy, I might as well give up the entire idea. So my plan is to follow the eating guidelines to have little meals, but to make sure that I don’t turn to my “drugs of choice” (ice cream and other sweets) for comfort.

But Seriously

As you are reading, I am approaching this phase in my life with humor, but also trying to stay focused on living each day at a time. Enjoying the wonderful things too, like the fact that somewhere in the past month, Sofie started drawing realistic looking (for a kid) figures, not scribble scrabble ones. And that she is a wonderful, compassionate child, who wanted to take care of me the day I had stomach flu or whatever that was. So sweet, she rubbed my back like I do for her when she is sick.

I just love her to bits. I am being careful not to say “cancer” to her at this juncture, or “chemo” because those are loaded big words and might be misinterpreted by well meaning teachers or other parents, and she might get a more negative message. So I am saying “medicine” and “treatment” and the like. Hopefully it will be a serious of moments to be managed. Mostly I am concerned about managing the huge co-pay bills now coming in, but will work on a payment plan. My insurance plan is not all it was cracked up to be, that is for sure. But they never are. Hillary Clinton, get to work on universal health care bills, please.

I want to say, at closing, that the love and support, via emails, and cards, and good thoughts I have received have been abundant and welcome. I feel that one of the many lessons that will come out of all this is my increased ability to receive love. That has to be a good thing.

I have not even begun to discuss the joys of a medically induced menopause, that will be later. So far, actually not too bad. But there are months to go!!!

I will write more soon, probably after the first treatment. My mom is coming for her first visit next week, planned six months ago, and this is a comfort, even though spending five hours in chemotherapy treatment room was not on my to do list for the visit. Hopefully we will feel better enough to do more over the weekend and while she is here. I hope so.

My love and thanks to all of you.

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