Hair this morning, gone this afternoon

Wait ‘til you see my new ‘do! PJ supervised my haircut today, it’s not quite what my mother would call a “pixie” cut, but it’s short and I like it for what it is—a transition cut before it’s all gone (as I continue to assume will happen).

We noticed that there’s no gray in it at all, and this is the first time in years I don’t see any gray in my hair. I thought maybe I’d had a miracle, then Dave reminded me that the chemo is killing living cells. I colored it about a week before my first chemo treatment, so maybe there wasn’t time for it to start to grow in gray.

So, duh, Penny—that’s why there’s no gray.

Sorry I have no photo evidence for you just yet. PJ took pics but I need Dave to size them and he worked a killer long day, so maybe tomorrow.

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A few good days

It’s been a good few days, and each one gets better. I can’t know if it’s a sign of things to come or just that the first round of chemo is long gone. I expect it will get tougher with each subsequent treatment, but for now I’m feeling like myself—and that’s a real good thing.

My appetite is healthy and I’m game for just about anything except tomato sauces and sweets. Someone had a birthday at work on Thursday and her group brought in a chocolate fountain with the usual treats for dipping, from strawberries and bananas to marshmallows and more. I couldn’t get away from it fast enough. That’s so unlike me.

I enjoyed the company of family last night over dinner at The Horseshoe Grille here in North Reading (Been there? It’s fabulous! The old restaurant was torn down and a beautiful new one built in its place, check it out.) Dave, PJ, me, my mother from Maine, brother Ted (whose hair style I will rival in days…) from Wilmington, my aunt and uncle Nancy and Mike Thornton from East Kingston, NH, and their daughter and my cousin Kathy Bennett from Wilmington and her daughter and son Lauren and Connor. Nice time, lots of laughs. We don’t see each other often enough. It’s easy not to take time for gatherings like that one, easy to blame the myriad constraints on our time. I’m learning those things aren’t as important as time with people you care about.

So, I feel good. Really and truly.

What’s next? Blood work on October 4, at which point my white cell count should be as low as it will go for this round (it takes 10 days or so to bottom out, then it should start to climb). Then I go for blood work again on the 11th, followed by Chemo #2 on the 12th.

Before all of that comes a hair cut. It’s starting to come out, not dramatically yet, but it’s beginning. I can run my hands through my hair and come away with multiple strands in my fingers. I need (mentally) to ease myself into it, even though I know it’s coming, and go from current length to short, even for a few days, before buzzing it away.

When I look like my dear brother, I’ll snap and post a photo. You can vote on which of us is cuter.

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My appetite came back

I’ve been operating on little food and the minimum of fluids for the past two days. I had no appetite and had to force myself to drink water.

I left work yesterday (Monday) at noon and headed home, worried I’d either fall asleep on the highway or have to pull over for a nap. I called my in-laws and invited myself to come for lunch. At my request there was an egg salad sandwich in process on arrival, and it was absolutely wonderful. It took about an hour to eat it; each bite was a tasty but a struggle.

Today my appetite is back. I realized at about noon that I was hungry, and honestly, that’s a sensation I don’t feel very often. I eat because it’s time to eat or because there is food at hand, not because I’m hungry. I’d love to put a dent in that habit over the next few months.

At least my taste for sweet things is still on leave. The thought of chocolate, cookies, ice cream—all dear friends—is seriously off-putting. Not a bad thing, not at all.

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Treatment #1, Second Day

Tired, no appetite (who me??), uninterested in drinking water (8-10 glasses a day are my goal), emotional. Just worn out. That’s all. Time for bed.

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Treatment #1, Next Day

I slept like a rock, interrupted only by frequent trips to the bathroom. Fortunately I crawled back into the sheets each time and crash back to sleep, my usually active mind elsewhere for the night.

I woke feeling like a million bucks and headed off to the health center for my Neulasta injection. Now I’m nursing the beginnings on a headache and have an upset stomach. It’s probably all normal and natural.

I’ve had some time to reflect on yesterday and the emotional roller coast it all was. I arrived at the oncology clinic on time for my 11 a.m. appointment but unsure whether I’d have my first treatment (I described all the indecision and tears in yesterday’s post).

As I stood at the check in window, I could see across the clinic floor, past the two rows of desks and work stations and beyond to one of the four treatment rooms. I saw someone in a blue baseball cap and could tell it was a patient, probably bald under the cap, and the image scared me.

“That’s it,” I thought. “That’s what it looks like.” I’ve seen plenty of people I recognize (or suspect) as being in cancer treatment, but here I was, about to one of them. It was a significant moment and I chose to stand there and try to take it in because even though it was scaring the crap out of me, I was trying to mold the scene and the moment into the foundation I’m trying to build for my recovery.

Once we worked through the “should I or shouldn’t I” scenarios, Dr. Bowler took me to the room I’d seen before and pointed to a chair next to the woman in the blue hat. The fear had evaporated. I knew it was the right place to be. That chair belonged to me.

From there it was as comfortable an experience as the staff could make it. Pillows and blankets warmed to a toasty 120 degrees, lunch and beverages served with a smile by a lovely gentleman who seemed unable to do enough to be helpful, my nurse Kristi with her gentle touch and happy smiles, a pumped “you can do it” fist from Rose, a visit and chat from the oncology social worker Melinda, and periodic check-ins and pats of encouragement from Dr. Bowker.

No pain but hopefully tons of gain.

Given the choice to walk away from chemo, it didn’t seem like the right thing to do. I don’t ever want to wonder or worry that I made a bad decision. I don’t ever want to look back and ask ‘What if,” or “Why didn’t I?”

I don’t want my beautiful daughter to ask those questions about me, I don’t want her to think for one second that I didn’t fight as hard as I could. I want to be here for PJ and Dave, my mother and sister and brother and their families, my extended family, my friends, but most of all, for myself. I’ve got too much living left to do to let this thing get in the way any more than it already has.

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Chemo Treatment #1

(This one has all the marking of a long entry—you might want to pour a glass of wine or grab a beer.) I had my first chemo treatment today. It went much better than I expected it would. That's really what you tuned in to learn, right?

It almost didn't happen at all. I got a call yesterday from Dr. Bowker, my oncologist, and she hinted that perhaps chemo wasn't the right treatment option. It's a long, complicated story.

Winchester Hospital has a relationship with the Dana Farber Cancer Institute of Boston, and yesterday morning the two facilities' joint tumor board reviewed my case (again). The DF consensus was that chemo isn't appropriate, but the board didn't have all of the tests and pathology.

My oncologist wasn't present at the meeting. She called yesterday to let me know she was on the fence and that we'd discuss this morning. Dave and I talked with her for about 30 minutes and focused mostly on the ultimate benefit that adding chemo should add to my overall treatment plan. She offered to send me into DF for a second opinion, but I nixed that.

I've had plenty of additional opinions from the DF board all along. Between my oncologist, surgeon, and radiologist, they all initially supported adding chemo. Dr. Bowker was leaving the chemo decision to me. I asked her point blank for her opinion and she said the magic words: "If it was me, I'd be having chemo."

"Go find a needle," I said, "let's get started." So we did.

I spent the next three and a half hours in the company of more wonderful members of Winchester Hospital's oncology center. Kristi, my nurse, was as nice as she could be, filled with encouraging smiles and humor. Rose, my oncology teacher, checked in regularly, and countless others motored through, checking tubes, resetting delivery through the IV pump, and offering support.

And I met Jane, another chemo patient who was on her third treatment. She's the kind of person who isn't going to let a bothersome thing like breast cancer get in the way of living her life. She was kind enough to answer our questions and didn't seem to mind our intrusion in this very personal time in her life.

It was simple. No problems. The first hour on the IV was a saline solution for hydration. I took a series of pills (to fight nausea and inflammation), and then Kristi pushed three large syringes of Adriamycin into my line and hung a bag of Cytoxan. It was smooth all the way around.

I fought a little indigestion along the way and came away with a headache (but I started the session with a headache—most likely due to the frustrated weeping I did while we were trying to decide whether to move ahead with chemo). My face felt sunburned, too.

Dave stood by very step of the way and held up well. He looked sad watching Kristi push one of the syringes into my IV line. That made me sad. Wonderful guy that he is, when he went out in search of lunch he came back with a bottle of my favorite non-alcoholic beverage, strawberry-kiwi water.

When PJ got home she said I looked pale. Dave treated me to a Ritchie’s Watermelon Slush from the neighborhood ice cream truck. There is new house construction going on up the street and all I can smell is the scent of freshly cut wood.

Tomorrow morning I have to go to the health center for an injection of Neulasta, a drug that boosts white blood cell production. Jane (the other chemo patient) says it creates significant pain in her joints. Time will tell, right?

So now I've installed myself on the couch. I've taken my evening dose of anti-nausea med (two doses on Saturday and Sunday). I feel like I'm retaining fluid (you know, girls, that puffy feeling you get in your hands and feet—I can feel it in my arms and legs but it honestly doesn’t look puffy).

Kristi told me to be sure to drink 8 to 10 glasses of water and I'm doing my best to get it down. I’ve also got the sensation that maybe I shouldn’t be behind the wheel of a car, I feel out of step by a half. Nothing serious, I know I’ve got a lot of drugs in my system.

So, long and short of it, today went well. I understand it gets a little harder as we go along, so we'll see how it goes. I'm on a three-week cycle, so my next treatment is October 12; I’ll be done the day after Thanksgiving.

Thanks for the good wishes, they mean everything to me. That's about it from here, what's new with you?

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Chemotherapy 101

I met Rose today, one of the oncology nurses at the breast center. We laughed and joked our way through most of her “this is what it’s really all about” teaching session. I was reduced to tears just once.

We discussed everything from fluid intake, nausea medications, constipation and diarrhea, meal ideas (small and frequent), to avoiding people who are coughing and sneezing and children who have recently been vaccinated, the need to watch out for cuts and scratches, and the need for contraception (in my case that’s unnecessary, not for lack of interest, rather because my baby-making machine is not longer in place).

Looks like I won’t be hanging around in bars over the next seven weeks.

Here’s the deal. Chemo starts on Friday of this week and will be delivered in four sessions, each two weeks apart. That assumes that my blood counts are high enough to warrant a treatment. Chemo sucks the life out of red and white blood cells and messes with platelet counts, so I have to have a series of blood tests done the day before each chemo treatment. Assuming the counts are where they should be, I’ll be able to go ahead with each session.

Actual delivery takes about four hours. Here is the sequence:
• two (or so) hours of hydration (saline by IV)
• several drugs in pill form (Zofran for nausea and Decadron, a steroid for nausea and as an anti-inflammatory)
• then a few syringes of the first chemo drug, Adriamycin (red on color, says Rose, "don't be alarmed if it turns your urine red")
• then a bag of the second chemo drug, Cytoxan
• then the remainder of the saline

That evening I'll take the first of five Zofran (one every 12 hours through Sunday night). There's another prescription for Compazine, for break-through nausea that occurs between the Zofran doses, or for other times up until the next treatment.

On Saturdays after treatment I have to go to the lab for an injection of Neulasta to boost my immune system.

So my new friends are Adriamycin, Cytoxan, Zofran, Compazine, and Neulasta.

It’s all a little overwhelming. I have a lot of material to read and a lot of thinking to do, not about whether to go ahead (because I’m going ahead with everything I have to give). It’s more about getting my head around everything that is likely to happen, how it’s all going to affect me, and then putting plans in motion to manage everything that’s about to happen.

I also need to think about how this impacts my family. I know they’re all with me, whatever I need and whatever it takes. It would be a whole lot easier if I could do this out of town someplace and reappear in two months with it all behind me. Given that option, I think they’d have me stay here, even though it’s pretty much assured that it’s not going to be much fun.

I need to think about friends, colleagues, and my ability to go to work and be a more-than-simply-functioning member of my department. That’s all a good distraction from the seriousness of the situation.

All of that comes well down the line, after I put myself first and put the business of taking care of myself as my first priority. That’s new for me. I’ve been trying. It’s not easy for me, but I’m trying.

As usual, let me know if you have any questions. If nothing else, your question and my reply might make the road easier to travel for the next person forced to pull out onto Route Chemo.

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A living billboard

I’ve been on top of the world for the last few days. I feel great emotionally. I feel centered, balanced, and ready to take on what’s ahead.

I’ve been doing a lot of thinking about what’s coming, and while I don’t know exactly what’s going to happen, I’ve got a good idea. While I’m not looking forward to any of it, I know it’s all temporary.

(BTW: Following an e-mail back-and-forth exchange, my cyber-friend Robin scheduled her first-ever mammogram the other day. I was so proud of both of us—her for putting herself first and making the call, and me for encouraging her to do it. Hopefully I didn’t nag too much.)

This feels like my final weekend of freedom. On Monday I meet with the oncology nurse to learn about and plan a schedule to start chemotherapy. I’m contemplating what to about my hair. I think the smart thing to do is cut it short (even though there are those around me who feel short isn’t my best look). I can think of not much sadder than having longer hair and watching it come out the way people describe it will, in clumps and bunches. Thinning hair and see-through-to-scalp on a woman is, in my opinion, quite unbecoming, and I don’t want to look like that through this experience. Slap me if you see me doing a comb-over.

I’ve made the decision not to buy a wig. My plan is to survive the next few months with a wardrobe of hats. Not turbans or scarves, but hats. I’ve never been a baseball cap fan, I don’t like the way I look in them. But who knows, maybe I’ll like the way the bald me looks in one. I have one I picked up at Disney World a number of years ago; it reads “Grumpy” across the front. Might be very appropriate on certain days.

And on days when I’m feeling very brave I’ll go out and about without a hat. A lot of women go that route these days and if I can be brave too, I’ll be a billboard for my condition, my attitude, and my outlook.

I’m not happy to be in this position, but I’m proud of myself for a lot of reasons. I’ve been proactive about breast health. I’m taking the aggressive road to recovery. I’ve been doing a lot of reading, been all over the Web for additional information, studied my pathology reports. I’ve been open and honest about the situation and will answer any question someone wants to ask.

I’m not ashamed or embarrassed to be a breast cancer patient. I have my moments when I’m scared out of my mind about this, but those moments have—thankfully—been few and far between. I know this isn’t going to kill me, and that accounts for most of the reason I can look it in the eye and work against it instead of letting it work against me.

Hair grows back, right? Just about every woman I know who has been down this road how enjoys a head of thick hair. Who knows, maybe it will come back in curls?

I’m heading Maine in the morning with PJ. We’re going to stop in Sanford and pick up my mother and then head to Portland, to (among other places) the “Life is Good” store. I’ve got my eye on a sweatshirt that I’ve wanted since forever. The sun will be shining, I’ll be with my two best girls, and it will be a spectacular day.

Then I can come home and get ready to get started with the next phase of my life as a breast cancer patient.

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Negative

So says the oncologist about the results of my bone and CT scans done last Friday. Negative. Looks like I have a green light to run with great enthusiasm into chemo treatment next week. Isnt' that great?

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180 degrees

Well, that last post wasn't too pleasant, was it? I've tried so hard to be positive and upbeat, and it all came crashing down yesterday.

It probably wouldn't have been so bad if I hadn't spent all that energy beating myself up for having a bad day. Those are going to happen and there isn't much I'm going to be able to do about them. I need to learn to roll with it. This too shall pass, right?

Today was light years better than yesterday. Who knows what tomorrow will bring? I have amazing loved ones who are walking with me arm in arm, wonderful friends walking behind me and pushing me along, and a gallery of yet un-mets who are aware and keeping me in their prayers.

Aside from a cure, what more could a girl ask? Thank you.

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