Naked Mole Rats and Trees

We’re camping out at Goldstream Provincial Park near Victoria B.C. As I watch a man walk his very large Beagle/Bassett mix down the path, I turn to Francois and say “See, that would be a good dog to have.”

“You LIKE that dog?”

“Sure, he’s big enough to rough house and play with, but also calm and easy….What kind of dog would you like?”

“I don’t like ANY dog. I don’t want to OWN a dog.”

“Ohhhh…. Come on….. You LIKE dogs…”

“You WANT a dog? OK, don’t worry. If you die I’ll get Delphine a dog.”

“Hey, then, if I have stage III cancer, I get a dog right away!”

I’m really loving this play we have.

But then suddenly Francois becomes a bit over-aware. He flinches and stumbles out apologies. Yeah. OK. I was having fun.

But I still get a dog if I’m stage III. (PPPBBBLLLFFFTTT!!)

So…updates. Hmmmm…. What have I been thinking about?

Naked mole rats.

I started by thinking about wigs and strangers conversing with me about my cancer.

Then I started thinking about eyebrows.

And armpits.

And places that usually itch like Hell if I shave the hair off of them.

And while I seriously believe I’m not going to feel my ‘womanhood’ threatened by losing my breasts or the hair off my head, …I am still afraid of the Naked Mole Rat look. What will it feel like to look at this scarred, completely hairless body?

I associate images of abused pre-pubescent girls, death camp survivors and other, confused, weak, identity stripped, victims.

So who am I going to ‘be’ as I make this journey through chemo? I feel this need to create an image of myself for myself. A sense of who I am, no matter how hairless, scarred or sick I become.

So since I’m camping in a big forest of big trees, I’m thinking I’ll take a tree as my symbol — a place to house my identity as parts of it are shredded by my treatment choices.

A big tree.

A strong tree.

I’ll be that tree that leans off a cliff into the space above the sea. It rarely has any leaves, but can endure the constant onslaught of wind and water. And my family will be able to depend on me for support. I can continue to anchor them, to hold them, even if, for the fall and winter seasons, I cannot shield them.

And the (IS there a correct spelling for this?) HOKINESS of what I’m writing warns me that, just in case this whole tree plan doesn’t really work, I should get a WHOLE bunch of naked mole rat posters and just paste them all over my office door at work.

Vive le MOLE RAT! Long live the mole rat!!

Maybe Francois would be up for investing in a couple of pet Mole Rats….

I imagine they aren’t very cuddly though.

I’d go for the dog. ;-P

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Mellow and Happy

Having a sense again of the earth under my feet is a welcome feeling. I’m up with the sunrise this morning, sipping coffee, reading my newspaper and thinking about yesterday. I received a LOT of information from my oncologist and I’ll include some of that further down, so if you’re not interested in my storytelling (What? You mean MY self absorbed mental meanderings are NOT the highlight of your day??!) you can just skip down to the next entry.

Friday Morning

My snarling intolerance for cancer questions devolved into a slow boiling subconscious simmer of generalized impatience and irritability.

At breakfast Francois asks me some innocuous question about the car or the garbage or whatever and I give him a glare that could freeze boiling water.

“It’s nice to have Suzy back!” He jokes.

“What’s THAT supposed to mean?” I snap (knowing full well what he means).

Delphine has been working very hard on her summer reading project, sponsored by the King County Library. She’s been wanting me to bring her to the library to turn in her work. I needed to get a new battery for my cell phone, so I wanted to stop at Qwest. Since Qwest

(By the way, they do NOT carry batteries for their own cell phones!! I swear somehow I will find a way to punish them for this. They will suffer the vengeance of grouchy cancer woman and feel my pain. Boy will THEY be sorry when I finally decide on a family cell phone plan and I DON’T INCLUDE *THEM* Naa nah naa nah naaaaaa NAA! And here’s a big fat raspberry for them: PPPBBLFFFTTSSSPPPFFFT!!!)

Ahem…Since Qwest is located near Taco del Mar and that’s my kids’ favorite resteraunt, we went there for lunch.

“Mom, do you LIKE having breast cancer?”

Then she gets out her angry eyes.

“Because sometimes you ACT like it.”

So I explain to her how the stress effects me. I can get really hyper and overexcited, but then I can also get very grouchy and mean.

“How are you today?”

“I’m feeling pretty grouchy.”

“Oh.”

“Do you think I’m acting grouchy?”

“No, you’re OK.”

“Good. I’m trying really hard not to act grouchy.”

Still, I just can’t bring myself to walk kid slow. It’s suddenly some sort of physical impossibility. If I do anything more at kid slow I’ll EXPLODE. So I’m marching off in large, fast, long adult legged strides and defiantly refusing to look back for my kids as my poor daughter does some kind of crazy upright skipping side-stroke through the mall trying to keep up with me and simultaneously cajole her 3-year old brother into moving faster with little races and running games.

Thank GOD for parent friends!! The parents of Delphine’s friends have literally saved my butt this week. DeNova, Kristy and Tara have been true Godsends. Taking both Paul and Delphine at a moment’s notice and juggling them into their already very busy daily schedules has really helped Francois and I out. What a relief to be able to protect those cute kids of mine by simply placing them in their competent hands for a few hours.

So kids go to DeNova. Francois and I get in the car to drive to the CANCER CENTER. The CANCER CENTER is a very short mile from our house. Still, for some reason EVERY F***ING CAR in BELLEVUE needs to be ON THAT ONE MILE at THIS ParTICulAR MoMENT!

“I HATE that car! Why can’t that CAR MOVE? Oh, the light is RED. I HATE that LIGHT! Maybe we should go the OTHER way around the block next time. Move OVER Now now NOW NOW or they won’t let us in. I am SO GROUCHY. How can you LIVE with me? I can’t STAND sitting in this CAR. Park park PARK now THERE THERE I have to get OUT of this CAR and WALK. Boy I need a WORKOUT! Am I BEING HORRIBLE Francois? I’m SO GROUCHY.”

“You’re fine.”

He’s genuine in his response. He means I’m not bugging him. I need that. I need to be with someone who knows me so well and has suffered so much at my moods over the last 18 years that this venting stuff really just doesn’t faze him.

That’s when I start mellowing out. It’s a slow, easy descent.

I love you Francois.

Visiting the oncologist

OK, silly images? There was this book series I read when I was ten years old called The Chronicles of Pydrain. It’s a fantasy with high kings, wise enchanters, noble warriors and young foolish (but also noble-hearted) aventurers.

So, like, Dr. Harrington is the hero Prince Gwydion, cutting through evil foes, planning attacks, coordinating battalions — and uh, Dr. Wahl is the wise warrior and gardener Cole, also a noble and experienced warrior, but skilled in cooking up magic potions, nurturing personal growth and dispensing wisdom. Or maybe she’s the enchanter. She’s rather young and vibrant to be an old enchanter though. Anway, I’m Taran the assistant pig keeper, the hapless, over-enthusiastic, naive newbie.

OK. If you didn’t read it when you were ten, don’t bother now. It’s not really that important. It’s just the whole fantasy aspect of this — the cancer quest! And the experience of being the novice central figure in this quest guided by experienced, noble, battle-wise souls.

(And yes, it sucks that all of these fantasy characters are MEN when all of the real characters here so far are WOMEN.)

So the news. The big stuff. I discovered that the tumor they found in my breast is even smaller than I thought!! It’s barely 1 cm. So, so small!! So if Dr. Harrington and her pathology troops don’t find any more lymph nodes or tumors, we are, indeed, at a stage 2a breast cancer.

If they find more than 4 cancerous lymph nodes or a tumor larger than 5cm in my breast, they’ll have to add radiation to my list of to-do’s for this cancer.

Dr. Harrington lays it all out in a line and walks you straight through it. 1, 2, 3, bam, bam, bam. Dr. Wahl has this funny multi-vocalic ability that allows her to communicate at many levels simultaneously. There’s just no way to capture everything she said here — but here’s are some things that might interest you:

The treatment is 1. Surgery 2. Chemo 3. Radiation (if needed) and 4. Drugs.

Chemo is ‘TAC’ — Taxolene, Adriamyun and Cytoxan —

These guys are administered in one dose, over 3 1/2 hours, once every three weeks. I’ll take a total of six doses.

One week feeling crummy. One week recovering. One week feeling good.

Here’s the fun part — I get to decide, within a certain window, when to start all of this! It’s kind of fun, like a simple calendar soduku or something. Hmmmm… I’m mapping different start dates out on my calendar. So, if I don’t want to be sick on neither Christmas nor Thanksgiving, I’ll have to be sick on Halloween. Hmmm… If I want to have a hope of hair for my daughter’s birthday in March, I’ll have to be sick on Thanksgiving. So….

I got it! These are the weekends I chose to be ill!! I’ll do treatments October 10th, October 31st, November 21st, December 12th, January 2nd and January 23rd.

So by April I’ll have hair.
By Halloween I’ll be bald.

I wasn’t too keen on the wig idea, but Dr. Wahl warned me that being bald with chemo is like being noticably pregnant. Complete strangers will come up to you to talk about it.

I had this dream last night about going to a wigmaker. It was hysterical. It was in an Cairo bazaar. I’ll tell you about it later.

Right now my kids are hungry and I’ve got to get ready for our annual camping trip to Vancouver Island.

I’ll be taking the Victoria Clipper back on Tuesday for a breast MRI and genetic testing on Wednesday. I’ll try to write a quick update then.

Coming down

It’s kind of funny — the bit of good news tonight took a bit of wind out of that adrenaline kite I’ve been flying. I’m feeling rather sad.

Of course, I suppose it was a rather dumb idea to stay up two hours past my bedtime watching Titanic!! (Go figure!)

Adrenaline is such a funny mask. I can have the illusion that I’m just fine and dandy, especially when things are quiet (the phone, the kids, etc.). But I’ve noticed I have developed a strange intolerance for questions!! Anyone asks me a question about my cancer that is even slightly off the exact point of discussion I want to make and I bite their head off.

I wonder when that psychologist I called is going to call back!?

Paul asked me why my hair didn’t come out when I went to the doctor this evening.

I’m looking forward to going camping next week.

;-P

GREAT NEWS!!

Dr. Harrington, my breast surgeon, just called me and gave me the results of my scans. It does not look as if the cancer has spread anywhere else! The bone scan came back completely negative (by the way, the technician told me I made beautiful pictures…I’ll insert a humble bow in here) AND the CAT scan looked completely clear except for one small spot on my lower spine, which because of the bone scan, can be ruled out as something worrisome.

I guess this makes my situation MUCH less dramatic and interesting — but you know what? I think I can live with that. Curable cancer is a very nice phrase to pass around. I have a curable breast cancer.

I have a curable breast cancer.

Now…about those boobs… what to do what to do what to do…

MANY HUGS TO ALL —

Suzy

Logic? Schmogic.

I swear, it feels like it has been WEEKS since I’ve written in this blog.

So in the Seattle P-I my horoscope lists me (Sagittarius) as having a perfect ’10’ of a day. My first thought is that by some stroke of horoscopial magic *if* there is cancer anywhere else in my body, it will be spontaneously cured today, before the bone scans and CAT scans. Or, if that doesn’t work, the fact that I had a great workout yesterday and my body feels really really GOOD today means that all will be clear (as if, if I HADN’T worked out, the bad stuff would all still be there).

But you know what? Smarter more cancer-educated people than me have been spreading some of the non-logic this week as well. I told my breast surgeon that I would really like a simple mastectomy on my left breast when she does the modified radical mastectomy on my right. Apparently that’s called a ‘prophylactic mastectomy’. (And here I thought those were all about men and their sexual tools!) Anyway, she told me more and more women are requesting this, and she would do it, but unless there is a medical reason, she couldn’t professionally recommend it.

I told her I just didn’t think I would be able to find a good running bra for a uni-boob. Especially a BIG uni-boob. (Now, when I use running bras that are not special ordered from Montana, it does, in effect, create a uni-boob effect, with a large single sausage mass swinging back and forth, THAT’s a BIG uni-boob….) But after listening to me complain about the big uni-boob problem, she tells me I could get a lift and tuck and reduction and all sorts of fancy options for my breasts afterwards. (Tassles? Did I hear someone mention tassles?)

So I’m trying to be open…hmmmm….new boobs. Made to order boobs. Cute little frenchie looking boobs?

So I open up their packet and start reading about breast reconstruction.

Holy mother of Jesus!!

If the breast surgeon can’t professionally ‘recommend’ a phophylactic mastectomy how can she professionally recommend reconstruction!! Man, snipping that baby clean off seems much easier than salvaging fat and muscle from other parts of my body to mold into a non-feeling breast shape.

My breasts have served me well. I’ve enjoyed them. My children have enjoyed them. My husband thinks they’re OK (actually, when I was younger, they were GREAT) but he’s always been a legs man.

I’m a bit mystified about the whole reconstruction argument.

So I guess I’ll be cold-calling strange women and asking them about their breasts today.

“Excuse me Madame, I don’t mean to bother you this afternoon, but I was told you are a breast cancer survivor and would be willing to talk about your breasts?”

“What shape are your breasts currently in now?”

“How do you typically use your breasts?”

“Do you take your breasts on runs? How do they perform?”

“How many people are involved with your breasts? Would you be willing to talk about their feeings regarding your breasts?”

One of my very dearest friends’ mother-in-law is a breast cancer survivor. This woman is just beautiful, inside and out. She’s the kind of person you feel you know deeply as soon as you meet her. She’s probably one of the women I’ll talk to this afternoon.

My mother-in-law is also a survivor. But the funny part of the conversation went like this:

Friend: “So you’ve never talked to your mother-in-law about her reconstruction?”

Apparently, my friend has talked with her mother-in-law about this.

Apparently, they’ve talked a LOT about her boobs.

I just guffawing with laughter in attempt to picture this with my mother-in-law.

I mean first of all, the woman is FRENCH. Have you ever tried to pronounce ‘boob’ in FRENCH?

The word is one of those nasal, closed mouth vowel combos that just kill me. (And yes, I must admit now that because of this same pronunciation issue, I cannot even pronounce my own last name with any dignity!)

And secondly, the Lepeintre’s aren’t really the kind of family that sit around and talk about their body parts.

So I’m imagining the big, festive, french family dinner at their country house in Normandy and my attempt to make conversation with my mother-in-law about her boobs. You’ve got to add in the bad French and the thick American accent.

But you know what, I know she would be very open to sharing with me. She’s a marvelous, empathetic and intelligent woman. We’ve travelled a lot together and we’ve shared some intense stuff. She was probably the very best with me when I suffered a bit of post-partum depression after Delphine’s birth. It’s not her.

It was just the idea of me, before all of this, bringing up the topic of her boobs. That image just still gets me rolling.

OK. 25 more minutes and I can start that barium smoothie.

hugs to everyone out there!

Suzy

It’s announcement time — and of course, many friends and family members have a LOT of questions. So I’m posting some previous emails I’ve sent here to catch up anyone who is interested.

August 18th

Hi to you all —

I saw my breast surgeon this afternoon. She’s great. I really like her.

She told us basically what we already knew — but with a bit of bad news. She doesn’t think the small tumor they found in my breast is what caused the lymph nodes to become infected with cancer cells. She’s expecting to find more cancer in my breast. It is invasive ductal mammary carcinoma. Estrogen positive, progesterone positive and HER2 negative. That means tamoxifen for the rest of my life. Not a pretty drug, but if it works, heck. HER2 negative means it’s not the most aggressive form of cancer.

We have surgery scheduled for September 8th. We want to get the results of genetic testing and the MRI in order to decide what to do about breast #2. Apparently, if I want to, I could get a breast reduction and lift on my left breast when they reconstruct my right and it would all be covered by insurance. So I’m thinking…hmmmm… a complete NEW MADE TO ORDER set of breasts? Tempting….very tempting.

Recovery from a modified radical mastectomy (right breast) is 2-6 weeks. She said no driving, swimming, or any kind of physical activity that gets your heart beat up for two weeks. So I guess I’ll have to limit my exposure to Ricky Martin for a short period.

Here’s my current breast cancer song: http://www.youtube.com/watch?v=gAoDsjvzO4I

But, if I do turn out to have the breast cancer gene, it will mean a double mastectomy AND having my ovaries removed. Ovarian cancer is linked to the breast cancer gene. I’ve got a 1 in 5 chance of having that gene. If I do have the gene, Kaylea has a 25% chance of having the gene. (By the way, the gene can be passed down by both men and women.) I will let you all know when I have some results.

The rest of the week is filled with doctors and scans. I get a CAT scan and bone scan on Wednesday. I see my oncologist for the first time on Thursday. So by Friday we’ll have a stage. If the cancer has spread anywhere, then they start with chemo and do surgery afterwards.

Friday will be a scary day.

Let’s hope for clear and clean images!!

The fun news is that I actually am looking forward to something linked to this cancer. There’s this amazing organization called ‘Team Survivor’ (http://www.teamsurvivornw.org/) and it’s all about women living with cancer working out together. You get all of this sports training and comradrie for FREE!! Hello Latin dancing! Hello triathlon and semi-marathon training!! I found these guys at the registration expo for the Danskin Triathlon.

When the pictures from the Seattle Danskin are ready, I’ll send you all a copy.

hugs,
Suzy

August 7th

I got the call from the doctor this morning and I do, indeed, have (ominous sound effects here please)…breast cancer.

I’m not interested in talking to anyone on your schedule. I’ll talk to each of you on my own schedule. That makes email great — but please no phone calls.

So far they confirmed one cancerous mass in my breast and cancer in two lymph nodes. They are still doing more tests on what kind of breast cancer I have and I’ll be scheduling and MRI to see if there is anything anywhere else. So so far, we’re at stage 2a, which is 92% survival rate. Let’s hope that’s where this all stays!!

I definitely do NOT want sappy sympathy. I’m in the middle of an adreline rush (anxiety induced) that is actually quite a wild, even enjoyable, ride and I think I’m just going to ride that adrenaline rush for awhile. You can feel free to talk about how YOU feel, but don’t try to sympathize/empathize with me. This is a wild ride and I don’t even know what I’m feeling. I don’t want any help interpreting it (LOL).

I’m fantasizing about a ‘breast funeral’. I could make this great slide show with close ups of my chest in different places and times in my life. “Here are my breasts in Egypt. Here are my breasts as they crossed over the wall into East Berlin.” We could end the whole thing with a bra burning.

Whoo. Who needs drugs with this kind of adrenaline??

hugs to you all —
Suzy