Hair and the Dog(s)

Okay, no more brave, little, wistful, stoic sufferer. I HATE the hair thing. I am so ugly. I am falling to pieces, everything hurts: my chest, my head, my scalp, my hair follicles, my armpits, my shoulders, my neck. Hair is everywhere. I am shedding more than my black lab, my border collie mutt and my friends' two golden retrievers combined. They told me that one day I would wake up bald, end of story. They didn't tell me that I would have to personally remove each hair from my head. I am beginning to appreciate what a full head of hair I used to have. I must have had about gazillion pieces. Now they number in the thousands. Thousands of hairs don't look like much. It's nothing like thousands of dollars, for example. Thousands of hairs is mostly bald. It's worse than bald. It's like I have skinny, little, glass needles sticking out of my head that with any pressure snap off with tiny splintering burns. It's revolting.

Remember the blog post where I was raving about the dignity and charisma of bald headed people...

Guess we need to reconsider...

Then there are the smells. Everything smells disgusting, including me. My shampoo (yes, even a thousand hairs could use a little shampoo), my skin lotion, my pee, my clothes, everything smells ghastly. I'm telling you it is just like morning sickness. This whole thing is like a sadistically distorted version of pregnancy. The queasiness, the hypersensitivity to tastes and smells. Even the chest pain sometimes feels like the tingle of breast milk "letting down". I mean how cruel is that?! Breast cancer, which is pretty much the opposite of fertility, birth, and new life, is an experience that most resembles pregnancy for me. Perhaps it isn't breast cancer so much as chemotherapy. When you think about it, I have no idea what breast cancer is like. Let's hope I never find out.

Well, thank you. It feels good to rant a bit. I'm sorry I haven't written for a while. As I've mentioned, having cancer is very time consuming. Last week, after feeling a bit yucky for a couple of days, my husband and I went to Martha's Vineyard to work on estate stuff related to the recent deaths of his parents. (As I've also mentioned, he's had a sensational year losing two parents, an aunt and an uncle, completing the annihilation  of that entire generation of his family.) So to break up the week of cancer blues, we thought we'd take a happy jaunt to the Vineyard to deal with death. It wasn't too bad really. We had the dogs. Everything is better with dogs.

The Hair

Dearest Bloggees,

As promised, I am posting the photos of the hair odyssey. Most of these pictures were taken Sunday, March 20, 2011 when the first of clumps of hair began to drop. I panicked. Time to cut it off so I don't have to endure the full brunt of the ugly denudation.

I confess that I have not enjoyed this experience. Even more than chemo it brings home the not so terrific predicament that I am in. The surprising thing about losing your hair is that it sort of hurts. I hadn't expected that. It also makes me feel paranoid.When I go to the grocery store, the drug store, the coffee shop, I feel like people are staring. I may be imagining this. I want to do these chores, to live my life as normally as possible,but my appearance is shouting, THAT LADY HAS CANCER, so loudly that I can't concentrate on what I am doing. I forget to bring home the thing I bought. I leave my wallet at the check out counter. I forget to buy the thing I left the house to get....It's scary. Chemo brain some call it, but I don't think so. I think its just that I am rushing to avoid the run-in with the casual acquaintance. How will that conversation go?

*****************

Amy: Hi Jane (I am using a fake name here to protect the innocent? Any resemblance to a real person is purely coincidental.)
Casual acquaintance, Jane: Hi there. (Not remembering my name and unable to place the bald-headed women with the slightly swollen nose and greenish complexion.) How are you?
Amy: (This is where I am really at a loss...Great? Been better? Not so good, I have cancer? Not bad, considering I have cancer? Fine, except that our plumbing is on the fritz, and I haven't been able to wash my hair for a while which is why I have to wear this funny scarf?) How are you?

**************

The only places where I don't feel conspicuous are at the hospital and at shops that cater to cancer patients. Not places where I am eager to hang out more than is absolutely necessary.

Well, no point in further belaboring this loss. Here are the photos, without air brushing.

  Before taking action.

 Pigtails in preparation for the lop off. Looking slightly hysterical.

 Forget the pigtail-lop-off approach. Just hack at it.

The husband admiring his handiwork. The wife looking a little sick.

Husband increasingly proud of his creation, takes close up shot. 

The sad wreckage.

Today

I still have some hair. If I go completely bald I will be sure to add the photo. Please note, not everything is deteriorating. My nose and eyes are starting to clear up. Maybe that is the silver lining to tripping over the dog two weeks ago. Having the opportunity to observe improvement in the midst of decline.

Oh, and the wig...

Thanks everyone for listening. No need to tell me that I look great. I'm doing okay, and feel no inhibition about being bald in front of you!

Lots of love,
Amy

Support Group

I went to a breast cancer support group meeting this week. This was the second support group I have ever attended. My first experience involved a group of people dealing with marriage separation. During the late nineties, my husband and I split up for a while. I was pretty devastated. A lot more devastated than I am now about breast cancer. I remember that the first thing I noticed walking into that gloomy church basement that reeked of loneliness and resentment, was that I was the youngest person there.

The facilitator had each of us go around the room to tell our sad story of desertion (I'm pretty sure there were no "deserters" in the group). When the woman who had separated from her husband ten years ago finished telling her story, that she must have told thousands of times, I left. It was obvious that the support group strategy was not for me. I had no intention of mourning my loss for more than a couple of months.

The first thing I noticed about the breast cancer group was that I was one of the oldest. Why are so many women in their thirties and forties under attack by this disease? My own children have experienced far more loss of grown up friends (parents of their friends, in their thirties or forties) to cancer than I did as a child. I can't recall a single one of my childhood friends losing a parent to anything other than divorce. There is the theory that as detection technology improves we find more cancer. But that does not explain the younger woman thing. In fact, the data suggest that the incidence of breast cancer in younger women (under age 50) has been stable, at least between the years 1975 and 2006. I guess it's just me. It's the young ones that find support groups and similar resources useful. People over 50 expect ugly lumps in their lives and perhaps need less support living with them.

The second thing I noticed were all the wigs in the room. I have become quite skilled at spotting wigs. There is no way those things can fool anyone who's on the look out for that particular artifice. I realize that this skill is not too impressive when deployed in a room full of cancer patients, but when your productivity is on the decline, you have to celebrate small accomplishments.

One of the most amazing sensations I experienced during the meeting was how my impression of each woman in the room changed radically during the hour and half we were together. As in the ruined marriage group, the facilitator had each of us in turn tell our cancer story, and explain where we were in the treatment process. Following each story I arrived at a fatuous, myopic judgment about the character of each member of the group.

As the newest and least cancer experienced person in the room, I told my story last. I told them I was having my second treatment this coming week and that I was expecting to lose my hair two days later. I told them that I felt prepared and wasn't too scared, but that it was becoming a more significant milestone than I had planned for it to be. I told them that I was worried about what my bald head would look like and about my fear of seeing the ugly moles and shape of the thing. I told them my plans for cutting my hair in advance and about my preparations for living without it.

And then each bald woman told her hair loss story. And in the telling, each woman impulsively, and without apparent regard to what the woman before her had said or done, removed her wig. Perhaps it sounds schmaltzy, but each woman revealed a head that was so much more beautiful without the costume hair than it was with it. I was awed. I wanted to praise each one of them, tell them how much I respected them, rave about how brave and good I thought they were. Something about a bald head, it radiates dignity and commands respect. That realization feels supportive.

Denial?

I wonder if I am in denial. I am not really programmed for denial. I have always looked for the worst possible outcomes of most life experiences. I have a couple of nicknames that celebrate this trait:  "Eeyore" and "Amy Little" (as in Chicken).

I've been waiting since I was 24 years old to get breast cancer. I was prepared. There were times when I was so anxiety ridden about getting breast cancer that I couldn't eat or sleep for weeks. Those were days in my mid to late twenties. Then I moved on to AIDS. During the early 80's I took my temperature so often, looking for that "low grade fever" I kept reading about, that work colleagues would sometimes walk into my office and catch me in the act. So humiliating. Every cough, nose dribble or sore throat were significant harbingers of impending doom. I was a study in health anxiety disorder.

I remember the morning I found the tiny lump in my breast that would change my world, sort of. It was shortly after the holidays. I had had a very busy couple of months working hard to enjoy the newly emptied nest. I was busy with work, dates with my husband, socializing, and traveling. Our Christmas holiday was an especially festive time that included lots of eating and drinking that made me feel guilty about how I had treated my body. I frequently prided myself on eating healthfully, exercising regularly and treating my body with respect. So, as kind of a punishment for bad behavior, I decided that I deserved a really thorough breast exam, no short cuts. There it was, a little pea slipping around near my nipple. I knew it was not a familiar lump. A week later the tests began and here we are.

I think I behave better handling a disaster than I do anticipating it. I remember the night my husband and I dropped our five-week old son during a weary late night hand off gone wrong. At the time we were on an island off the coast of Maine. We hired a private plane to take my son and me to the nearest hospital on the mainland. My husband, an optimistic, emotionally consistent sort of person, stayed behind to take care of our two-year old daughter. During our telephone conversations that night, an inadequate connection between me at the brightly lit hospital and him at the quiet, dark island house, I was shocked to sense that I felt completely confident that our baby would be fine  while he seemed less certain.

I usually feel pretty confident about my coming out of this predicament alive. But then I start reading other peoples' blogs, written by women who had similar or better prognoses than I have. I read about their recurrences, their renewed anguish over a revised diagnosis, an ever more toxic treatment regimen and the amplified threat to life. I feel the need to check these blogs every day to make sure these people keep posting. If they live and blog, I reason unreasonably, so will I. I am sure that some of you may do this with my URL too. It's okay. Maybe it works both ways. You keep checking. I'll keep blogging.

P.S. More info on the RSS feed business. Many thanks to Robert and Kimberly! xoxoxox

Turns out you CAN create an RSS feed for this site. Simply add: herpositive.blogspot.com/rss.xml  to your RSS reader (browser or email program). 

Or, if you use Google Reader, you may subscribe to this blog through that service, which will automically issue notice of updates.

Thank you for reading.

Side Effects

Dearest Bloggees,

I'm sorry. Does that sound disrespectful? I shouldn't think so. I'm  stickin' with it. How have you been? For some odd reason, I am so grateful for your readership. It's cozy. It makes me feel less lonely. Not that I am feeling particularly lonely these days, but to the extent that loneliness is a constant condition that ebbs and surges, having bloggees prolongs the ebb. So when I ask how you have been it's because I am genuinely curious. If you feel like sharing, this needn't be a one-way street. Email, use the comment button below, whatever.

So it was a whirlwind week of side effects from chemotherapy, a smashed nose, and birthday celebrations. In the midst of the birthday/reunion celebration with five of my college roommates and dearest friends, my husband arrives home with my daughter whom I haven't seen since my surgery. She and I do not communicate much from a distance. Mostly text. I never had the guts to send a text like: "BTW removed the boobs". I'm thinking she got the picture during the hug. Hugging your children without bosoms is a little sad for a parent. (I am trying to be sensitive here to the reality that dads get breast cancer too, holy-mother-of-god forbid.)

I've begun taking baths again. Used to be that baths were a major winter indulgence for me. I was not supposed to take them for the first couple of weeks after the surgery. They are not as enjoyable as they used to be. One of the best things about the bath was how the water made my boobs float off my chest the way they never did in dry life. (Perhaps that was a wee bit personal for this blog? To hell with it. I warned you from the start that this blog was not for delicate sensibilities.) Now, the only things floating in the bath are scabby bits of dead skin.

Ok. Now, I'm making myself sick. I'll change the subject. My sister-in-law gave me an orchid. I love it.

Not a very good picture, but I'm hoping it will help to remove other images that may be installed in your minds.

Here is a picture of Orchids from the Singapore Botanic Gardens that I took last September while traveling there for work.

Ok. This is boring.

More information on how to follow this irresistible production. I have been asked how, if you are a Follower, you may be notified of new posts. There isn't really a way to do that without an RSS tool button on the site, which there is not. So, if you want:

• You may add this link:  http://herpositive.blogspot.com/ to your "favorites" or "bookmarks" list and just take a peak from time to time.  You will see this URL in the address window of the browser when you're viewing the blog.

• Or, a simpler way to save the URL...if you see the tiny white on orange "B", in the browser address bar - just left of the URL, grab that with your mouse, and drag it to your desktop (or anywhere else that you like). An instant shortcut to this post. Note that today, you may see an orange on white "B". Tomorrow, it could look different.

Well thanks for reading, if you made it this far. I wish you all happy, productive days.
Lots of love,
Amy

Trouble with Other Body Parts and a Sailor's Welcome

Dearest Friends and Family,

I apologize for the blog gap, but it's been a busy few days. What with chemotherapy session #1, follow-up visit with the surgeon, and a brief visit to the local ER after tripping over my dog and breaking my nose. Yes, my friends, the physical transformation continues. No boobs, thinning hair, two black eyes and a big, fat schnozzoli.

Just in case you need a closer look...

Don't worry. I won't be posting pictures of my chest. 

So chemotherapy is fun. You have an appointment at 12:30 for blood draws. You have an appointment with the doctor at 1:15. You have infusion at 2:00 and you're done at 4:30. Add in the driving, it's full day, which wouldn't be so bad except that you have to have someone with you. Someone who may have a family to take care of, work colleagues to keep happy, and their own busy lives to deal with. Not only is cancer a time sink for me, it  is one for my loved ones. 

The good news is that the side effects have been very tolerable. No puking, which is the best news. I'll keep you posted on the hair thing. I wonder if I will still have a swollen nose and black eyes when the hair falls out. So many beauty challenges, so little time (or, should I say, so few effective resources...)

On the home front, the husband has returned from the high seas, handsomely tanned as predicted, scruffy, but not as happy and relaxed as he might have been. That may have had something to do with the welcome home he received. I think I will include here a message he wrote to some friends that describes his home coming.

*********************

 OK, Amy is laughing about this now.....

7PM: I am dropped off at wonderful home after a long arduous vacation (thanks again Elise for picking us up!!) expecting to walk in to give Amy a huge hug, and hugs to Whit, who is home on Spring break, dogs etc and finally to be able to resume taking care of my wonderful wife...

Well, it didn't exactly unfold that way:

Walk in, Whit comes out from the office, hug, great to see you, is mommy upstairs sleeping?

Whit: "you haven't heard?" (is this a joke or something?)

 Me: "heard what?"
Whit: "Mommy's in the hospital" (uh oh)
Me: horror-stricken look unable to speak
Whit: "no, its OK, she tripped over Lilly and landed on her face, she's fine really...we can go pick her up in 15 minutes" (huh?)

 Me: "if you took her to the hospital why didn't you stay with her?"
Whit: "no, the ambulance took her... the blood was dripping into her eyes so we decided to call an ambulance..." (not sure what to say here- oy vay? yikes? OMG? WTF?)

It took a while to sort out the whole story, but evidently about a half hour before I got home, Amy tripped over the dog, landed on her face, perhaps broke her nose, and was taken to the hospital by ambulance after a consensus was reached among EMTs from 5-6 emergency vehicles lined up in our driveway.  She was treated and released promptly, we picked her up and brought her home, ice pack on the nose, Amy laughing all the way.

If our plane had landed on time I could have been around for the festivities (although the good news is that I have an alibi if there is any question about how Amy got the cut on her nose and two black eyes).  Of course, if the mechanical issue that caused the delay forced a flight cancellation, who knows what I would have eventually come back to....

And did I mention that Amy is undergoing chemo.  And that she is hosting a reunion for her college roommates Friday night (I am designated "cabana boy" in Amy's words).  And its her birthday tomorrow (which we are looking forward to celebrating with others' on Sat if we get there.)

*********************

Catching Up and Cancer Glamor

Cancer is a total time sink. I have no time to play Bosom Blog (BB).

Over the last few days, I've had several appointments.

First appointment: Echo-cardiogram

 I think I was more worried about the echo than I was about the bilateral mastectomy. That thinking goes something like this:

• Every time I go to the doctor my blood pressure is elevated. 
• Since my cancer diagnosis, the staggering heights to which my systolic and diastolic readings soar triggers inspired scientific inquiry and debate among medical professionals throughout the region. 
• People with high blood pressure have thinning of some parts of the heart that should be fat. 
• Conclusion - my heart parts are too skinny. (That would be the only parts that are. Cruel world.)
• Skinny heart parts lead to big trouble

Next appointment: Oncologist

Following the echo, I go to the appointment with the oncologist. Very quickly they call me for my vitals. Very soon after that they call me into the exam room. I love this speedy service, I think to myself as I take my seat in the exam room. Ten minutes go by. I listen to the hallway sounds: footsteps, voices, doors opening and closing. I check the clock. Five minutes have elapsed. My breathing shallows. Big inhale, slow exhale, I recall from yoga. Feeling a bit light headed. Notice that my hands are sweating. Check the clock, 5 more minutes have elapsed. What is the cause of this delay? I begin to wonder. More deep breathing. Check the clock - 4 minutes have passed. Beginning to panic. The radiologist and the oncologist must be discussing the echo results. They are struggling to figure out how to treat a cancer patient with a failing heart. Deep breaths, blood pounding in the ears, light headedness. I drop my head between my knees. Bolt upright as I notice the revolting absence of boobs between my chest and knees. Check the clock. Another 3 minutes have elapsed. Full blown panic. What's the worst that can happen? I think comfortingly. I die. Does it really matter? My kids are almost grown. They can take care of themselves. My husband, sisters and friends will move on; and I'll be dead and won't care. My failing heart begins to beat less frantically. Doctor enters. "Sorry, I'm late. Your heart is fine. We'll start chemo on Monday."

Next appointment. The wig and boob store. 

What a trip. Seriously. I have never had such a prolonged "out of body", so-to-speak, experience. We enter the shop and overhear the following conversation:

Heavy, 50ish woman standing at the cashier's desk:  So the UPS guy show up with a little box, and I say 'Yaaaay, that must be my boob!' I'm sure he thought I was nuts. I open the box and I see this thing that looks like something you might find on the chest of a 14-year-old girl. I mean what were they thinking?! Do I look like a 14-year-old girl? Does this boob [pointing at her left breast] look like it belongs on a 14-year old? Anyway, I got a call that you guys have the right boob. Right boob! That's funny. Cuz it is the right boob!! (Hysterical laughter.)

Cashier: [Hands a large box to the woman.]

Woman: [Opens box.] Jesus! That thing is huge! [Picks up the boob.] Whoaaa! This thing weighs a ton! How the hell do you expect me to carry that around all day. I'm not even supposed to pick up a jug (so to speak) of milk...

Wig fitting:

This is how I look today, more or less...

Here are some options for the hairless future:

The Barbara Streisand

The Justin Bieber,  Ringo or Mo

The Bono or Cher

The Jim Carrey

I know, I know. So many styles, so little dignity...

Decorum and Nightmares

So a few people have asked permission to send the link to this blog to other people. You really must be kidding. Did any of you read the New York Times Magazine this Sunday? "Queen of the Mommy Bloggers"?  When I am not wanting to be Natalie Portman, I want to be Heather B. Armstrong.  Look out, Mommy Bloggers, Amy the Bosom Blogger is goin' viral. In other words, please send the link wherever you want, as often as you want.

Some of you have also been uncertain about how to become a "follower." In the right-hand column there is a button that looks like this:   

Follow

I think you have to click it and then set up a Google account if you don't already have one. With luck, you'll then be able to follow my every thought. What could be better than that.

Others have asked about the artwork behind the text. It is simply a template provided by Blogger.com, but it reminds me of the work of a talented artist who is one of my dearest friends.

So last night I took a pad and pen to bed for that 2:30 AM brain storm. I woke up with blue flair ink all over my "Let Sleeping Dogs Lie" PJs. I also woke with a thudding heart, clenched fists and teeth, in a thick boil of nightmare rage. For the fourth night in a row (a number that perfectly coincides with the number of nights that my husband has been away from home) I woke myself screaming at the absent spouse. "NO I WILL NOT MOVE OUT OF THE HOUSE SO THAT YOUR 30-YEAR OLD MISTRESS CAN MOVE IN MORE COMFORTABLY WITH HER ENTIRE FAMILY!" "I DON'T CARE IF YOU WOULD RATHER LIVE WITH A 30-YEAR OLD, BREASTED WOMAN THAN WITH ME!!! I SIMPLY REFUSE TO MOVE OUT OF MY HOUSE FOR THAT BITCH!!"

I wrote on my pad: "Husband abandonment dream."

Having had the dream four times now, I think I have it well analyzed. On February 14 I had my breasts removed. On February 25 my husband left to go sailing with his buddies in the Caribbean Sea. Don't think I don't know what you are thinking. "That rat!" "That selfish, spineless, thoughtless, pig!" "How dare he abandon his wife at such a critically sensitive, painful time in her life." "At a time when he should be demonstrating 24 hours a day his deep commitment to supporting her through this tragic event". "At a time when he should heroically rise to fulfill the promises he made 25 years ago to be her faithful partner in sickness and in health..." (or however that went...it's possible we deleted that part of the vows in an attempt to make them sound more homemade. That might have been a mistake.)

The truth is I forced him to go. It is a trip he takes annually. He and his buddies had long ago bought their tickets, chartered the boat, and plotted their course. I refused to be the reason he missed this trip. He needed a break from this experience more than I did, having endured three years of successive family illnesses and losses before this fresh calamity.

Nevertheless, I had to practically kick him out of the house. (Could that be the source of the house eviction part of the dream?) I had to collect signed, sworn statements from five different family members that testified to round-the-clock monitoring, feeding and nursing every day of his absence.

Since he's left he's been sending texts that sound a little sad...but how could they sound otherwise. It would just be tasteless to rave about the wonderful time he is having frolicking in the sea and sun and warm tropical breezes while I sit in a chilly, gloomy house listening to the incessant clatter of icy rain pounding on the gray piles of snow topped with smaller piles of melting dog poop, nursing horrible, mutilating scars that have robbed me of my sexuality. (I hope he doesn't read this 'til he's back on dry land. He might throw himself overboard. I also hope he is having a happy, guilt-free time.)

The rationale goes like this. I have a long road ahead of me. I need a well rested, relaxed and handsomely tanned sailor to hold my bald little head over the toilet while I puke up my guts over the next six months.