Monday, May 31, 2010

Contest Winner Announced!

Below is a video with the big drawing for the book, "Promises to Keep" by Jane Green.

Congratulations to the winner!

Anybody else who wants the book, Promises to Keep, you can purchase it from Amazon. Use that link and I get 4%.

Love to all the veterans today. Thank you for your service to our country.

Sunday, May 30, 2010

What Reconstruction Surgery is Not

"At least you'll have nice, perky boobs forever!"

Some mastectomy patients who are about to undergo implant reconstruction get offended when people say that to them.  Not me.  Being an 80 year old lady with high, perky boobs has been my lifelong goal.  I've always been hot for the centenarian and what better way to attract one?.

Now, living to 80 with any kind of boobs is the goal.  Amazing how priorities change.

Really, I know people who say this are just trying to look at a positive, or else they really don't understand the difference between augmentation and reconstruction. They haven't seen the hundreds of "after" pictures that me, the cancer patient, has after all.  If anything, they've googled and come across the very best example a plastic surgeon has to show - very few of which reflect norrmal results.

Except for the use of an implant to recreate a shape, there is no comparison between reconstruction after mastectomy and a boob job..

Here is an analogy.  Have you seen photos of that woman who had the middle of her face shot off and received the first US face transplant?

It's remarkable that plastic surgeons gave her a functioning face again, (and her appearance will continue to improve) but wouldn't it sound a bit silly to compare what she has now to, say, a face-lift?

Reconstruction is a surgical technique to attempt to rebuild something lost, but nobody can return a missing body part.  Skin and tissue has been removed; the architecture of the body has changed. Stretching the skin and using an implant may sound like a boob job but the results are not the same because the underlying structures aren't there.  Few of us will ever return to our pre-treatment shape.

Some get close though, even with tissue expander reconstruction.  They are in the minority, but it happens.

I've been warned I will not be among them.  I'm too thin, too much skin was taken.  Plus, I had a unilateral mastectomy and getting a match is always hard.  My doctor has never misled me into thinking I would look the same as I did before, but he seems confident that in a bra, I can wear clothes and look relatively normal.

The key is to remember that I will not look normal for me, but normal for a woman.  In clothes, in a bra.  Not nude.

We'll see.  As surgery approaches,  I've been trying to prepare myself for the worst, but as in all things cancer, hope springs eternal. Maybe my picture will end up on a plastic surgery site, displayed as a best result.

Maybe not.  I better start doing squats and perk my butt up, so my husband has something to look at, just in case.

I came across this picture of a woman who covered her mastectomies with tattooing.  I'm not a fan of tattoos, and I'm way too ADD to ever want to do something permanent on my body,  but this is pretty clever.

Does she walk around shirtless, I wonder?  What is the protocol for a woman who no longer has breasts?  If a big flabby guy with man boobs can mow his lawn shirtless, I would think she and her cute inked top should be able to do it too, don't you?

Thursday, May 27, 2010

Reconstruction Surgery Scheduled

And, for the worst possible time, I might add. I will be having my surgery on June 8th, the last week of school for the year.

While this surgery isn't as intense as the first one, I will need a drain, and so I'll need a week recovery time, unless I want to walk around a middle school with bloody bulbs swinging out from under my clothes.

This means an unpaid week off of work. My surgical choices consisted of a date either this year or next school year, and I decided that this year was already shot, so I might as well get it over with. I can recover, get used to my new and not-improved body, and start the year with cancer mostly behind me. Next year, I will just have herceptin every three weeks and a couple of minor revisions (and nipples and tattooing if I choose to do it) that I can schedule whenever.

I'll continue to work several weeks after the students are out, but there are things due the week I'm gone so it's going to be a struggle to accomplish everything in advance.

But, I'll manage.

Tuesday, May 25, 2010

Book Review - Promises to Keep

I have received a couple of perks as a result of writing this blog, aside from the nice comments I've received from the people who are sharing my experience with me.

For example, one day I opened up my email to find a letter from a publishing house. Naturally, I immediately figured they had come across my blog and were going to offer me a book deal. After all, there are zero books about breast cancer out there and few bloggers have tried to cross over into the publishing world. Why wouldn't they be out searching for unique people like me?

Reality has never been my specialty.

But, after reading the email, I was offered something a lot less work than a book deal. I was offered a copy of the book Promises to Keep, by Jane Green.

I love to read and I like free stuff, so I was super happy.

I was chosen to receive this book because my topic is about breast cancer, and the book is about a family who ends up dealing with breast cancer. The book is not released yet - it will be out in mid-June.

Not only was I given a copy, but I can offer a copy to one of you.

It arrived a week ago but I was in the middle of both Better: A Surgeon's Notes on Performance and Between Here and April. (I liked both)

Sunday, as I was flying back from a quick trip to Chicago (where I discovered I was weaker than I thought), I opened the book. And, I read the entire thing on the flight back. It was a quick read, one of those fantastic summer pool books - that is, if you don't have breast cancer.

If you do, it's slightly disturbing.

It is the story of three woman and their families, initially told from each of their perspectives. There is Steffi, a free-spirited chef who has not settled down yet. Her sister, Callie, is a photographer who is married to the love of her life and who has young children. And, there is Lila, who is Callie's best friend and who at 42, just now finds a man to marry. The book alternates between the lives of these three women and finally comes together when Callie has a metastatic recurrance of breast cancer.

And dies.

This is the disturbing part - the story takes place four years after Callie was declared NED, which means No Evidence of Disease. Suddenly, she finds that her cancer has spread to her brain. (Apparently, we breast cancer patients don't go into remission - we are NED. I haven't quite managed to understand the distinction but NED is a more fanciful word, so I'll stick with it.) Those of us who are "dancing with Ned" may not enjoy a story of somebody who gets run over by Ned.

It's a character study and not a mystery, and while the jacket doesn't tell you what happens in the book, the publishing materials and the author's blog does. So, I don't think I'm giving secrets away when I tell you Callie dies.

Interestingly, the author chose not to tell the story from Callie's point of view after the diagnosis except in a few brief conversations. From that point it's just her sister and her friend - effectively killing her before she even dies. But it does soften the impact of the tale just a bit if you are a reader with cancer.

After reading the book, I have to wonder what went on in the mind of the publishing house marketing team when they decided who should get free promotional books. "Hey, lets find some bloggers who are trying to survive the diagnosis of breast cancer and stay positive about their prognosis, and who are sharing that positivity with others, and give them a book about a breast cancer patient who dies! Her readership are probably breast cancer patients looking for answers, and they may want to read a book about a woman who dies of cancer too!"

It's an interesting marketing tactic.

But, I guess it worked because I'm writing about it.

Okay, if you haven't guessed, the book depressed me. It did bring home the fact that there are many who don't survive this disease. It can come back at any time, especially HER2+ cancer. There are no guarantees that in four years I won't have to start treatment all over again. The possibility exists that I could end up with metastatic disease, and being HER2+, if I do get it, it's also possible it'll show up in the brain. Herceptin doesn't penetrate the blood/brain barrier.

Those are things that I am aware of but have chosen to believe won't happen to me. Although my oncologist won't give me statistics, everything I read says I have a fine chance at a long life, and I believe that.

But, when you read a good book you get inside the heads of the characters. And, inside the head of a family dealing with the death of one of their own from a disease I have, isn't a place I want to be right now. Even though the family missed her daily but survived without her, which is what I'd want my family to do - it's still not something I would typically want to focus on at this phase in my life.

On the up side, the book is mostly told from Steffi's point of view, and being a vegan chef, every chapter closes with a delicious and healthy recipe. I imagine these are the kinds of foods we breast cancer patients should be concentrating on, and I will be making some of these dishes.

I thought this was a good book and a fast-read. Despite the heavy subject matter, it was actually a pretty light book - the cancer stuff didn't happen until the end. It's not high literature, instead it's perfect for sitting by the pool on a hot summer's day or for taking your mind off a plane crash when flying from Chicago to California.

I am allowed to give away a book, and I'm not your mother to tell you what will affect you negatively or won't. If you want a copy, feel free to post a comment below. I will number them all in order of posts, put them in a hat and draw them out. The winner will get the book. You will have to share your address with me, and I will pass it along to the publiser. You can't post anonymously unless you are willing to post something in the text that tells me who you are. First name, last initial should do.

Let's put an end date on this: comments must be received by midnight Cali time May 30st. Maybe I will video the winning results and put it on YouTube and then you can see how awful my hair is.

Thursday, May 20, 2010

Six Months Surgical Follow-up

I had my appointment for my six month post-mastectomy follow-up with Rockstar Raja today.  Since I'm still being seen by the oncologist and plastic surgeon, I figured seeing the breast surgeon was superfluous - but I now do what doctors tell me to do.

For the most part, anyway.  My surgery was actually 7 months ago.  Time flies.

I wonder if doctors realize how much we women read into what they say and do?  Here is the examination from my point of view:

He checked out my mastectomized breast and asked me if it hurt.  He seemed amazed when I said it didn't.  

I must be really strong to not feel pain when a doctor thinks I should.

He said, "it's time to get it out of there"  meaning the expander.  Yes, I thought,  the skin is stretched tight.  I told him surgery is tentatively scheduled for June.

Then he did an exam on my remaining girl.

As he did the breast exam he looked concerned and frowned.

Is he concerned about me?  Does he feel something in my breast?

He looked at me and said, "Who is your primary care physician?"

I answered, "Dr. Q."

Dr. Q.  happens to have an office across the hall, and he used to share a practice with Dr. Raja so they know each other very well.

Why does he want to know?  Is there something that he has to talk to him about?  Does he feel a lump? Do I have cancer again?

Dr. Raja looked at the nurse and said, "Is Dr. Q in today, can we get him?"

Oh God!  Something is wrong.  He needs the doctor right now!  Why would he need him now? Does he need pre-approval for a test? He feels something!

The nurse said no, he was out of the office today.

I said, "Is something wrong, do you feel something?"

He said, "It's hard to tell.  When did you have your last mammogram?"

I told him August, when I'd been diagnosed.

Do I need another one right now?  Am I going to go through all this again, just a few weeks after finishing chemo? How can I do this to my boss again? My family?  

He said to have the surgery to get the expander out and then to call my primary care physician and schedule a mammogram for August and make sure he got a copy.

Make sure he got a copy?  Does he think he'll have to plan another surgery?  Oh no, I don't want to do this again!

"I'll see you in six months."  Unless your next mammogram shows cancer, in which case I'll see you in August.

Now, here is the same conversation from what I imagine to be Dr.Raja's perspective:

"Did you have pain with this expander?"

"No, it''s not painful, just a little uncomfortable."

"Well, it looks like it's time to get it out of there."

What has it been, 7 months?  What is the plastic surgeon waiting for, she's clearly as full as she can get.  It will be hard to do proper tests while that is there and she's almost due for her yearly checkup.

Time to do a breast exam on her remaining breast. There is some hardening that is consistent with her previous history of cysts.

"Who is your primary care physician?"  I need to remind her to schedule her yearly exam with him.

"Dr. Q."

Oh, Ernie.  I wonder if Ernie is around?  I wanted to talk to him about that poker game this weekend. I wonder if my nurse knows?

"Is Dr. Q in today, can we get him?"

The nurse said no, he was out of the office today.

Darn, it's his turn to bring the beer.

"Is something wrong, do you feel something?"

"It's hard to say."  

You have a history of cysts and I can't tell the difference by feel between cysts and cancer and I'm not going to guess with a patient."

"When did you have your last mammogram?"


Ah, that's right, it took her a while to be comfortable with a mastectomy as opposed to a lumpectomy.

"Have your surgery to get the expander out and then to call Dr. Q. and schedule a mammogram for August and make sure I got a copy.

Ernie's office staff always forgets to send me information for my records - maybe the patient can help me with that. 

I'll see you in six months.  

I'll see you in six months.

His way sounds so much better, doesn't it?  But, you can see the holes where he left ambiguity with a patient.  And, you can see where I didn't probe enough.  I am not sure "it's hard to tell" is an appropriate answer when it comes to "do you feel something?" but then again,  I am experienced in the ways of breast lumps and I don't feel anything..

In any event, my plan is to see Dr. Raja in November.

Wednesday, May 19, 2010

Hope for the Best

But prepare for the worst.

I believe, without a doubt, that I will have a long life.  This cancer experience will be put behind me, and just become a story to tell my grandkids.

You know how certain Grandpas like to say, "Pull my finger?"  I think I'll be the grandma that says, "Wanna see my tattoo?"

And, it won't be a little wrinkled butterfly on my ankle.

I know I have an aggressive kind of cancer with a high rate of recurrance, but I also believe Herceptin the Miracle Drug is going to give me many more years to nag my family and gross out my future grandchildren.  I fully expect to be an old lady with a sassy Betty White attitude who complains her kids never come to see her. 

And yet, despite my belief that I'll live a long life,  I was very pleased when I got a message from our HR department.  They are switching insurance companies, and I have a one-time opportunity to purchase life insurance without a medical check-up.

I think I'm going to live a long time.    But, I bought the maximum amount.

I never had life insurance before, except for whatever was free with whatever job I had.  I'm uninsurable now, but before, I was always very teenager-like in my approach to my mortality.  I would rather spend that money on shoes. 

Cancer made me practical.  $35.00 a month for $100,000 in case of my death seems like money well-spent right now.

I don't think this cancer will kill me.  But, the possibility exists.   And, I want my family protected.

Tuesday, May 18, 2010

A frivolous post on being grey

 This guy is my new hero:

He doesn't care that his hair is grey.

I do.

Of course, his is way longer than mine.  But, I still look cuter in a skirt.

At the risk of being repetitive, I'm going to discuss my hair again.

I know you ladies will understand.

It's very odd that having hair bothers me more than not having hair.   At least when I was bald, I looked like a person undergoing chemotherapy and nobody could blame me for how I looked.  Now though, nobody knows I had cancer treatment. 

People believe that I choose to look like this.  That I buzzed my hair to 1/2 inch and let it be grey because I like it that way.   Maybe they think I decided on a super short pixie cut because I think that is what flatters me, or that I imagine myself to be Halle Berry.

Hopefully, they know I'm female.

Now, I realize that the world is not focused on my hair.  I understand people are not thinking about me, and in fact, likely don't notice me at all.  I certainly don't walk around judging the haircuts of strangers, and I would expect that nobody is doing that to me.

But, that doesn't really matter, does it?.  There is the term "bad hair day" for a reason.  I don't think men have this feeling,  but it's pretty much a universal experience among women.  Having a day when you can't tame that curl, when your hair looks dirty and you don't have time to wash it, when you are overdue for a cut but have been too busy, or just having that morning when no matter what you do you can't get your hair right - well, that "bad" hair can sour our world and make us uncomfortable all day. 

And, I have really bad hair, and I will for a while.

Not only is it short man-hair, but it is starting to vaguely curl.  I had curly hair before but it was long and thick so it was mostly a wave.  

And, it was a fabulous red.

Pretty soon, I'm going to look like a sheep.

My world is off because of my hair.  I went shopping recently and felt uncomfortable in Bebe, Express and Cache.  I have been shopping in those stores for years. They cater to younger women than me, but they carry my size (few stores do) and at least have clothes for people out of their teens. But, searching the racks at Bebe, all I could think about was my grey head.

I no longer belonged.  They knew it, and I knew it.

I'm a fast driver.  When I go past people, I wonder if they are surprised that this grey-haired old lady is in a rush?  I've certainly decided not to get behind people because of the color of their hair. 

There are times when I fear it's not really the hair that is bothering me.  It's what's now showing under the grayness. I have never seen so much of my face in my entire life, and  I'm pretty sure that's not a good thing.  Let's just say I wasn't meant to enter a beauty contest.   We women use our hair as a screen to hide behind.  On a bad skin day, or a shy day, or when we need a break, we can lean our heads forward and let our locks cover our faces. But, now my screen has been ripped away and I feel exposed, for all the world to see.  The funny thing is I was always the one who didn't care if a cut wasn't perfect (although I never allowed it to be shorter than shoulder length).  "It'll grow back" was my mantra. 

"It'll grow back in two years" doesn't quite sound as optimistic.

If I was as pretty as Mr. Jay, maybe I wouldn't mind the grey.

But, I'm not. 

He puts his makeup on way better than I do too. 

I may pop on on my stylist this week and see if she thinks there is enough to dye.  If I have super short dark hair, at least I can pretend to be French.  If it's too early, or if I'll have to do my roots too often, I guess I'll try to adopt the relaxed attitude of that guy in the skirt. 

At least, when summer comes, we'll both be cooler. 

That's something.

Saturday, May 15, 2010

Lady Lump

It's been a long time since I updated you on the state of my bosom.

Several weeks ago I had an appointment for my last "fill" - the final one that would pump up my breastical area and give me my C cup back.

I was not looking forward to it. The skin is stretched thin and tight, and I was afraid more saline would ending up busting me like a water balloon. It's so tight you can see the expander right through it.

This is what an expander looks like:

Do you see the big round, dark thing?  Well, not only can you see that through my skin, you can see what color it is.  Through my skin.   The raised area around the edges?  It created a raised area on my skin too.   You could trace it with your fingers, should you desire.

I know that you don't.

Let me detour and say that it is not painful.  However, it is not comfortable either.  It is hard, with slight give, like a bike tire.  I can't sleep on my stomach because it feels like I'm lying on a tetherball, and I'll slide off at any moment.

The most difficult part is, of course, dressing.  I have a huge, high, rock hard lump on one side and a small, sad, soft, lonely breast on the other.  I'm completely uneven and mismatched and it's hard to cover.   I suppose, with a complicated system of pulleys, levers, padding and a touch of duct tape, I might be able to get both sides to match, but unfortunately, I don't have an engineering degree.

Since the weather is nice and my sweaters are put away for the season, it's even more difficult to disguise.   At least now that I have man-hair I can take scarves and use them around my neck to try to mask the mismatch.  It makes me hot and I've always hated stuff touching my neck, but at least it distracts the eye.  Thank you, Miley Cyrus, for popularizing this fashion and making my cancer life easier.

So, back to my plastic surgeon appointment: getting even more saline in there seemed impossible.  And, as it turns out, it was.  My doctor declared me done, and we discussed the next step.

The next step is surgery to take out the expander, and in its place put in a silicone  implant.  This is the same implant used for women who want "enhancements.""

He showed me some implants in the size I will have (275 cc) and left the room for a bit.  I sat there and looked at them, squeezed and played.  I can't relate to them as breasts.  Women say they feel natural -  like real breasts.  To me, it feels exactly like what it is - a bag of silicone.

When the doctor came back in I couldn't resist the impulse to say, "I'm just playing with my boobs."  I wonder how many times he's heard that in his life?  I'll bet at least a thousand.  I said it anyway though, there are just some life experiences you don't want to miss out on.

Anyway, along with the implant on the mastectomy side I'll be getting surgery and a very small implant under the muscle on my non-mastectomy side.  The second surgery/implant is just to try and achieve a symmetrical appearance - not that I'll be bigger, I won't.

In fact, he said I "might" end up as large as a B cup.

After 50 years of being the skinny girl with the big boobs, I could end up with an A cup?  I guess I'll have a new identity - as a member of the itty bitty titty committee.

I'll be the chairman in no time, just you wait and see.

He has warned me all along that he can't give me back my breasts so I have no illusions that I'll look the same.  According to the doctor, I have a difficult anatomy - I'm very small, "like an 18 year old."  (You gotta love that doctor, don't you?)  They took a lot of tissue and the skin is thin.  It's likely the implant will show like the expander shows, around the sides especially, and I may have some ripples..  I am likely to end up looking like a woman who got a really bad boob job although he promised me he'd do everything in his power to give me a normal appearance.

I just want to get dressed without having a plan.

I left to talk to the scheduler, but when she found out I'd just had chemo she said she'd call in six weeks when my blood had the chance to return to normal.

Yesterday, I came home to a message on my answering machine.

"Good news! Your surgery has been scheduled for June 8th."

I am,  frankly, dying to get this expander out of me, no matter the result.  Better to dress around a rippling A cup than what I have now.   But, June 8th is the last week of school and a busy time for a school secretary.  My sub, who has been doing my job (in a most excellent way) since October, will be finished by then.   With this surgery, I will need to take a week off for recovery, and because I'll have a drain again, I really will have to be off - no cheating.

As much as I want to make that appointment, and I really, really do - I may have to see if I can arrange another time.  I'm not off work until the 23rd.  While nobody is indispensable, I have a job because there is a job to be done.  Lots of people have taken up my slack, and my boss has had to make do, and I'm not sure it's fair to do that again, even if it's only a week.  I hope the surgeon can accomodate me for the following week or two weeks later, when the kids are gone and it's just invoice clean-up.  But,  I sure don't want to go through the summer like this.

I'm ready.

Wednesday, May 12, 2010

Post Chemo - the 6 Week Update

Today is six weeks since my last chemo session.

I know those of you still doing chemo are dying to know how long it will take until you don't need a nap after typing "" Hey, if I'd known how tired we'd all get, I wouldn't have picked such a long URL.

Live and learn.

When I look back a month, it's like I'm a different person. Back then, I was Grandpa Simpson, slightly confused, living in the past, spending a lot of time sleeping with my mouth open, drool pooling on my chin. Now, I'm more like Marge. Brain functioning well (although still a bit slow.) I'm able to manage housework and a deranged family, but I'm not quite up to Lisa standards yet.

Since we in Cancer World like percentages, I'd estimate that my energy level has come back to about 75% of normal. I work 4-5 hours a day (with a 30 minute commute each way) and function fine. I still can't push it; a full day makes me nauseated and exhausted. I can't awaken early and I still need rest, but I'm so much better than I was.

Disappointingly, my blood is not back to normal. My whites are still low, and I'm still anemic, but when I am up and functioning and at work, I'm really there and not thinking about napping. I am even back to cooking dinner for my family again (most nights), something that I hadn't done in months.

I have enough energy to shop the mall again, and spend a half day doing something enjoyable. I can walk up a flight of stairs without needing to stop and rest half way up.

Chemo-brain is also improving. When I first started back at work, before chemo was finished, I couldn't solve the smallest problem if it involved sequencing or tracking something. My substitute set up a filing system of her own (appropriately) and the thought of looking for something in her files was just overwhelming. Like Grandpa Simpson, my memory would flake out on me; I'd forget what I was looking for before I found it and instead start talking about World War II. Now, while I still forget things if I don't write them down, I can follow a thought from beginning to end. I still occasionally discuss WWII but that's just when I want to drive people out of my office.

Physically, I'm better too. As I posted earlier, my hair is growing in, although it's very uneven and not very attractive. (Okay, it's ugly.) My eyelashes are coming back, my brows are full enough and I am forced to shave my legs on a regular basis again. My neuropathy is mostly gone, although when cold air blows on me I still experience some in my hands. My biggest physical problem now is bone aches. It's hard to tell if that is leftover from chemo, or a side effect from tamoxifen or herceptin. I wake up in the morning as I imagine Grandpa Simpson must - groaning, moving slowly, waiting to loosen up.

A nice hot bath/shower in the morning helps a lot with the aching.

I can't wait until I'm back to Lisa status, mind and body bright and able to go an entire day without feeling tired, but I won't complain. I've certainly come a long way in a short time.

You will too.

Friday, May 7, 2010

Quick note for Sacramentans - Race for the Cure

Tomorrow at Cal Expo is the Race for the Cure. Last year they raised over a million dollars for breast cancer research, and hope to beat that record this weekend

I'd considered starting a team and walking, but they want you there at 6:30 a.m. - team leaders even earlier. I think they said 5:30. In the morning. That would be extremely difficult normally, and certainly impossible while I was doing chemo, so I passed on the opportunity.

I had no idea they had a "sleep in for the cure" until just this week, or I would have done that one. It's right up my alley.

In fact, considering I've spent a good portion of my life sleeping in, I probably could have cured breast and colon cancer on my sleep schedule alone.

Next year maybe I'll start a team and you all can join me.

In the meantime, if you want to support the race on a lovely Saturday, here is the information:

Newbies to Cancer

While in the waiting room during my latest Herceptin treatment, I saw a new couple. They were clearly nervous and chatting with each other in the waiting room, eyes tentatively darting around at the rest of the people there.

This couple was young in Cancer Years. In their late 30s or early 40s perhaps. The woman had long, lovely, straight brown hair, and the man was handsome and being very solicitous in his interactions with the woman. I knew which one had cancer. They were clearly new to chemo and this experience, and I empathized with how they felt sitting there waiting to hear about their treatment. It hadn't been that long since it was my initial chemo consultation too, and my husband and I had sat there leaning into each other wondering how this had happened.

I am now as familiar with the oncology office as I am with my own living room. I know the rhythms of the place - the way you write your name and leave your card for when the receptionist is ready to process it, I know all of the nurses and which ones give "good stick." I know a lot of the patients and what they are being treated for. I'm like Norm on Cheers now - everybody knows my name and when I walk in, somebody slides a beer an infusion pole my way without my saying a word. At first, it was all so unfamiliar and scary.

As I played with a two year old whose mother was waiting for her father, their eyes kept landing on me. Maybe because I was at ease, or maybe because we were decades younger than everybody else being treated there. I hope it wasn't because of my odd hair. I smiled at them in a way I hope was reassuring.

During my 45 minute treatment that actually takes 2 hours (another thing I know and accept) I heard one of the nurses explaining the chemo drugs and side effects to them. I remember sitting for that talk too.

As I was finished and left, I found myself in the elevator with them. They started brief chit-chat and then the husband got to the point.

"How long have you been coming here?"

"Since early December. I'm finished with chemo now though, just doing Herceptin."

"What kind of cancer do you have?"

"Breast. You?" looking at the woman.

She said, "Lung cancer."

"What kind of chemo are you getting?"

"Taxol" they both said at once.

"Oh, I did that one. It's not nearly as bad as you think it is. I never got sick once. I did get tired at the end, but if you can just arrange it so you can sleep a lot and don't do anything strenuous, you'll be fine."

The guy said earnestly, "You look really good" and I realized that is why they'd been curious about me. I move with purpose and energy - but I am a cancer patient. I'm in the infusion room, and people are hooking me up to IV bags, but I still look okay. I'm smiling and cheerful and happy to be sharing my iPhone and keys with two year olds.

Maybe I gave them hope.

Whatever it was, I laughed at his comment, and I rubbed my 1/4 inch of white hair. "I feel much better. But, my hair wasn't this color when I started!"

The woman, naturally, clung to that and asked me about hair. Hair means more to us then men can know - we may have lung, breast, ovarian or colon cancer and yes, we are afraid - but we are also upset at the loss of our hair. I can honestly say I feel worse about walking around with this near-bald head showing than I do with one breast.

Anyway, I told her the information she wanted to hear - how it falls out all at once. I described how weird it was to grab handfuls of hair and have big tufts of it come out and you can't even feel it. She asked if she should shave it, and I told her it would be a good idea, although she might want to wait until it starts. With long hair like that, it would be a horrible mess to just let fall out.

It was a brief conversation and then we said good-bye. I don't know if their chemo day will be Wednesday, and if I'll see them again or not.

I do hope my few minutes of sharing my experience helped her and her husband with this overwhelming situation they are facing. I remember how much I wanted to know what was going to happen to me at the beginning.

I've realized as a cancer patient that you never will know what is going to happen to you. Living with uncertainty is part of the deal. But, along the way, a few questions can be answered and I hope I can do that here with this blog, as well as in person. So if you ever run into me, feel free to ask me anything. I'm not shy.

Monday, May 3, 2010

Yes, hair again.

There comes a time in every recovering cancer patient's life where they need to make a critical decision.

No, I'm not talking about which doctor to choose, or a crucial surgical or reconstructive determination.  (Although, the nipple tattoo choice does present some tantalizing options.)

This determination is far more difficult.

We chemo girls all must come to it.  The big choice?   When to reveal your hair to the world after finishing treatment. When is the right time to give up the security of our cancer chic scarves and big earrings, which many of us have been wearing for six months, and just walk around with what is actually growing on our heads?

In a sense, this is the decision where you finally give up your identity as a cancer patient.  In exchange, you get an identity as a person with an unfortunate haircut.

I'm not sure that's the best trade-off.

Me?  I feel like I'm Linus giving up his security blanket.

I'm not alone: I've seen women in the chemo room whose hair is peeking out from under their wigs, because they aren't ready to show it yet.

For younger women, I imagine the choice about when to reveal regrowth is easier. Your locks may grow back a different texture (as mine has) but you are unlikely to have it grow back in an entirely different and unattractive color.

As mine has.

I wasn't grey when I got cancer.

And, it cost me $100.00 every six weeks to be able to say that.

Nobody has ever seen me with grey hair, including me. I intended nobody to ever see me with grey hair. Including me.

But, here I am.   With enough hair to go out and not look like a balding man, but not enough to dye and get the real me back.

So, what do you all think? Am I ready?

For frame of reference, and so you know why I may not be ready to walk around with this short look - this bad photo is the way I looked one year ago on my 51st birthday, right before I found my cancer:

Does that woman look like somebody who wants grey hair?  I think not.

But, out it comes..