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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My two lives

A good cry is usually therapeutic. Not tonight. I’ve been completely miserable all day. I can’t even describe how I feel. I’ve kept everything bottled up inside and worked so hard to show a positive face. Today is all just crumbled away and I wanted nothing more than to climb into bed and pull the covers up over my head.

I keep saying that I’m lucky this isn’t more serious, and grateful for all the love and support, but today I’m not in the mood to recognize lucky or grateful. I’m angry that I have to go through all of this.

Tonight I just need to be by myself and feel sorry for myself. I just want to be able to spend some time being angry at whatever it is that caused my cancer. Is it in my genes? Something I did? Something I didn’t do? Who can I blame?

It might be a little easier if there was something I could blame, but I don’t know whether a something exists. I think I’m just going to have to accept the fact that life is the way it is. And I don’t want to do that, I don’t want to accept anything.

I’m tired of being upbeat and nice and positive. I want to call the shots, have things go my way, on my terms, on my schedule. I don’t want to wait for any more test results or wait for doctors to keep our appointments, or to be told what someone else decides is going to happen next.

This is my “I’m feeling sorry for myself” night. Tomorrow I’ll go back to being what everyone else thinks I am, positive and strong. I’ll put everything else first and bury myself in the rest of my life all again, and some day down the road it will all boil over again and I’ll sob myself into another pounding headache.

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Later that same day...

If I appear to be glowing, just simply radiant, it’s nothing special. It’s just the Technetium -99m.

I had my CT and bone scans today. The CT scan involved the previously blogged abut Berry Smoothie Barium Sulfate, and the bone scan involved an injection of Technetium-99m (TC99m to the nuclear medicine experts among us). Here’s what it’s all about:

From Wikipedia:

• Technetium-99m is a metastable nuclear isomer of technetium-99, symbolized as 99mTc. The "m" indicates that this is a metastable nuclear isomer (metastable: of, relating to, or being an unstable and transient but relatively long-lived state of a chemical or physical system, as of a supersaturated solution or an excited atom.
• Technetium-99m is a gamma ray-emitting isotope used in radioactive isotope medical tests, for example as a radioactive tracer that medical equipment can detect in the body. It is well suited to the role because it emits readily detectable 140 keV gamma rays (these are about the same wavelength emitted by conventional X-ray diagnostic equipment), and its half-life for gamma emission is 6.01 hours (meaning that about fifteen sixteenths (93.7%) of it decays to 99Tc in 24 hours).
  
• The short half life of the isotope allows for scanning procedures which collect data rapidly, but keep total patient radiation exposure low.
  

From WebMD:

• For a bone scan, a radioactive tracer substance is injected into a vein in the arm. The tracer then travels through the bloodstream and into the bones. A special camera (gamma) takes pictures of the tracer in the bones. This helps show cell activity and function in the bones.
  
• Areas that absorb little or no amount of tracer appear as dark or "cold" spots, which may indicate a lack of blood supply to the bone (bone infarction) or the presence of certain types of cancer. Areas of rapid bone growth or repair absorb increased amounts of the tracer and show up as bright or "hot" spots in the pictures. Hot spots may indicate the presence of a tumor, a fracture, or an infection.

We’re hoping for a boringly uninteresting result. No hot spots, no cold spots.

According to bone scan technician Andrew, there’s more radiation exposure walking outside on a sunny day. He added that if you took the hospital’s entire inventory of this nuclear stuff and worked with it quickly, you could injure a termite. (He was very nice but kept calling me “Ma’am.”)

Are you as curious as I am to see the bill for these tests?? I’ve got a few here in my DCIS Sally file, from biopsies, laboratory charges, pathology charges. It’s frightful what this would cost me if I didn’t have health insurance. I’ll have to compile everyone some one f these days, you’ll understand why rates are so high.

BTW, have you had a mammogram lately? Or, have you reminded someone you love to have one? Your mother? Grandmother? Get on that, please.

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Tests and Dear Friends

I hope I pass my tests today; I didn’t study at all. (OK, really bad joke, but I take advantage of every opportunity to cast a little humor at the situation. It’s my blog, I can make bad jokes.)

Today I’m having a bone scan and a CT scan. In preparation for the CT scan I just drank the first of two bottles of “Readi-Cat 2 Barium Sulfate Suspension” (450 ml, 2.1% w/v, 2.0% w/w). And hey, it was the Berry Smoothie flavor! Tastes a little like a berry juice that’s just on the edge of going bad, you know that little tang you get that makes you think, “I probably don’t want to finish this…”

On the bright side, I’ve been celebrating Visitors-From-Away-Days. My dear friend Candace was here from Missoula, MT. Her company was recently acquired by a firm in, of all places, Wakefield, MA, and she was here for her maiden visit to the new home office. I hope this means she’ll be out here every now and again because I so enjoy any time I have the chance to spend with her. She brought a lovely gift of three wishing rocks from Flathead Lake and I’ve added them to the Wellness Shrine I’m creating with Sally and my Mel’s Bracelet (when I don’t wear it, it’s draped around Sally’s shoulders).

(What’s a wishing rock? A rock that has a natural band that circles it, like a ring. It’s obviously a vein of some other material or kind of rock that was pressed into it sometime ago in history, perhaps when the dinosaurs stomped across the glaciers. I have memories of looking for wishing rocks with my mother when I was a kid roaming on the beaches.)

And later today my dear friend Laura will be here. She gets the “distance traveled” award; she’s a Reading native who transplanted to Seon, Switzerland, a few years ago. She and her partner Monica are touring the New England coast with two friends. I can’t wait to see them.

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Life in the Fast Lane

I’ve complained about having to wait, right? Testing my patience, wanting to “get on with it?” Well, we’re picking up the pace.

Things are sliding into a higher gear. Dr. Bowker (my oncologist) booked me for a bone scan and a CT scan in two days (on Friday). I’m also booked for an echocardiogram in Sunday (yes, Virginia, there are technicians working at Winchester Hospital on Sunday). What does that mean? There is urgency to move quickly or is it simply a convenient opening in the schedule? I won’t read more than that into it.

Next comes chemo teaching (that’s really what it’s called) with the oncology nurses at the Breast Center (on the 17th). I assume I’ll be able to start chemo shortly thereafter.

So what will it be? Baseball caps or scarves? Paper or plastic? PJ says she’ll cut my hair short. Someone at work suggests I dye it purple or some other color. I don’t think purple is my color, but it would be fun to be that outrageous if only to see the way people would react.

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Addendum

More changes. I’m doing chemotherapy first.

Makes sense. Why wait? Why let the next month go by without taking any positive action to tackle the problem?

Met with the oncologist today. She ran two hours late for our appointment, which only heightened my apprehension. At least she apologized for the delay. She agreed with me that there is no reason to wait, we can get started right away.

She’s scheduling me for a CT scan and a bone scan, both to ensure that my cancer hasn’t spread. There is no reason to think it has (it was in the first lymph node, the second was negative). She also wants an echocardiogram (as a baseline). Once those tests are complete the fun begins.

This will be an 8- to 12-week course of chemotherapy, unlike the 2 to 3 week course the surgeon suggested. I’m disappointed that, once again, the information I get is different than the opinion he initially delivered.

I’m not going to make any more schedule predictions. I make them and anticipate them, only to have to take it back and start planning again. Looks like the only way to take this is a day at a time. For now I can look ahead a week or two, but that’s about it.

Patience, Penny, patience.

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Stepped out of my life for a while

Dave and I are just back from a wonderful weekend in Newport, RI, with our friends Chuck and Gail Holloran. We walked around the mansions and along a portion of the Cliff Walk, did a lot of window shopping and people watching, enjoyed wonderful food and beverages in a couple of great restaurants, and enjoyed two wonderful nights at the Marriott on Americas Cup Avenue.

It was a wonderful to escape for a few days. Now it’s back to business and life as we know it.

There isn’t much happening. We’re in “waiting” mode and have been for a little while. I have an appointment tomorrow with the oncologist and hope to walk away with a better understanding of what the addition of chemo to my treatment regiment will do for me.

I have plenty of questions, among them:

• How is it delivered, by IV or pill?
• How often?
• How long will each dose take to deliver?
• What can I expect for side effects?
• How will my oncology team measure its effect?
• What kind of follow up will this require?
• Why do I have to wait to start chemo until after radiation?

As to the bad node, which one was it? The first or second in line? What are the chances the tumor cells have traveled further? If the second and there is a chance of additional movement, is a “short course, 2-3 week” chemo session sufficient to do the job intended?

It seems as if I am losing treatment opportunities while waiting for the September 26 appointment with Dr. Nath. I understand that it’s important for the surgical site to heal properly, but still, it’s there something else I can be doing?

More when I know more tomorrow.

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