Wigging Out

It's pretty much a guarantee that all my hair is going to fall out in the next couple of weeks, since I've completed my first chemo treatment.  While I will miss it since winter is just around the corner and I rely on my hair to keep my neck and ears warm, I see the pluses of having no hair.

No hair means no shaving or waxing.  No greasy grossness just because I took a fifteen minute nap.  No need to find a new hair dresser in a new city, at least not for a while.

All good, in my book.

But I have to say that all the literature (and trust me, the doctors have given me a whole bag of books and pamphlets to read so that I can understand my cancer and my treatments better) recommended that I get a wig BEFORE my hair began to fall out.  Since my first treatment was last Thursday and most of my hair should go by the by in another week or so, I felt like the pressure was on.

It was sort of like finding out that prom was in a month, and you needed to have the perfect dress in a week just in case it had to be altered.

Thank goodness I didn't have to rely on Sean to do his part to properly accessorize . . . I can just imagine the fiasco that might have occurred if he had to find a corsage and tux to match my new 'do.  I still remember this one combo he always wore when I first met him:  a plaid flannel shirt (pink and green stripes on a black background) and army camouflage pants.  It wasn't pretty ladies, and it took a lot for me to see past his scary lack of clothing taste.

See what happens when you're trying to give orders while you're the subject?  Anyway, here's my "before" shot -- my real hair (which I still have, probably for another week).  It's looking pretty meh right now because I didn't want to pay to get it colored and cut right before it all fell out.  So here's me saying goodbye to ugly roots and uneven self-appointed trim!

The thing is, just like with a prom dress, I had to ask myself what did I really want with this wig -- did I want to get the one that looked the most like "me" and fit my personality the best, or did I want the dream that I never had?  It was a tough choice, made all the tougher by the variety of places to help with hair loss here in the city.

Or at least, that's how it seemed when I first looked at the list of wig shops and hair treatment centers that they gave me at the Breast Center.

Not as many choices as I thought, I soon found out, although there are a couple of really good options.  First, there's this website put together by the American Cancer Society called tlcdirect.org, and that's where I started my search.  Kindly, the Breast Center had put a copy of the TLC catalog in my bag of literature, and I looked through it before hitting the web.  It was a great place to find out some of the basics of wig shopping -- seriously, who knew all the necessities included in wearing a cranial prosthesis?

Did you know there is a specific way to measure the three dimensions for your head?  I didn't, so it was a great lesson, and that one was soon followed by an introduction to all the accoutrements that go with wearing a wig -- a stand, a band for your head, hats, scarves, "hat hair," wig shampoo stuff, and so on.

And here's Lydia, making me all pretty.  I might admit to just a touch up or two of this photo, but seriously, with that gorgeous hair, I had to do it justice.  I'll be going back to the Wig Shoppe to get a bit of a trim and tuck as soon as my real hair falls out and we can see what adjustments have to be made to get the best fit for me.

The hat hair might be my favorite thing, and I'll definitely be getting some of that as well.  It's basically a hair rim, so there's no hair on top, just like those monks from the middle ages.

I think it will be a good look for me.  Not that I'm prepared to wander around pretending to be a monk from that era (despite it being right up my alley of study!), you understand.  But a hat with a bit of hair peeking out the sides will be a hearkening back to my dorm life years.  Ah, good times.

But I haven't ordered anything from the tlc website yet, because Sean suggested that I visit a shop and put my hands on a wig or two to get a feel for what I wanted.  He was right, as usual.

My first attempt at a local establishment failed, but my second one was a success.  Despite how much I hate talking on the phone, I called a hair replacement institute where they basically make you a custom wig.  I'm sure they charge a pretty penny, but I can't say for sure.  When I called, the sweet young lady told me that she didn't have the information that I needed (I asked about their process and cost), and that she would have someone else call me back.  I gave her my number, and waited the rest of the afternoon.

It's been over two weeks now, and I still haven't heard from them, but I'm taking that as a sign.  A sign that I'm too poor to be their client, or that they're swamped and just can't take on any new business.

And another shot of my new best friend, because she is so beautiful.  I think Lydia is a fair compromise between the hair I've always had and what it could look like if I actually fixed it!  While she's fairly traditional in color and very true to the styles I've worn over the years, she's also much more polished than I usually take the time to achieve.

My success came to me a couple of weekends ago, and it was a pretty good day, all in all.  I got up early (for me) and went to the Music City Quilters Guild meeting, listened to a guest speaker, and met the members of the guild for the first time.

Since I had my port installed on the Thursday prior, I didn't want to drive that Saturday -- my port is on the left side, and I was afraid that the seatbelt would put too much pressure on my chest.  Sean, in his role as supportive husband and encourager of me hanging out with other quilty people, dropped me off and picked me up to take me wig shopping afterward.  I think he enjoyed the experience almost as much as I did, no kidding.

The Wig Shoppe, located in Brentwood, has a great atmosphere, and the owner herself waited on us.  Her fun personality and sensitivity to cost really put both of us at ease as soon as we walked in.  I picked a couple of models, she picked a couple more, and I tried them on.

With a name like that on the box, I'll have to look great wearing this wig, right?

It was sort of like being at the beauty shop:  she has three booths with mirrors and the chairs that spin.  I sometimes spin a little too much and too fast, which is bad for the stomach, but I always feel like a kid when I get in the beautician's seat!

The wig I chose was pricier than the ones I saw online at tlcdirect.org, but . . . I have to admit, it was worth it.  Although I brought my new hair home with me, after my hair falls out, my head will be smaller, and my wig will need to be resized.  The shop owner will do that for me.  She's also going to cut "my" bangs for me.

There is nothing like paying for customer service and feeling like you got your money's worth, especially when you're under the gun and facing some pretty unpleasant tasks ahead.  Seriously, I can't remember the last time I felt so good spending so much money.

(And no, the Wig Shoppe isn't sponsoring this post.  I feel like it's only fair that I share both the good and the bad, for anyone in the Nashville or surrounding area, who comes across my blog.  I know I've appreciated all the help I've gotten over the past few weeks.)

Hello, Lydia.  Nice to meet you.  I know we're going to be such good friends.  ;)

Now, time for me to go play dress up with my new best friend.  I think I'll call her Lydia.  One of my old suitemates from college made Lydia my alter-ego because she could never remember my name, even though we lived right beside each other.

See, even in crisis I'm sticking with what I know.  It usually works for me.

Life's a Funny Thing

I have been planning to write a post about degenerative disc disease for quite some time, and have thought a lot about what I would say.  I knew that I wanted to address how I have come to terms with living with chronic pain by essentially following some of the same steps that alcoholics must go through to manage their disease.  You know what I mean -- first you have to actually admit you have a problem, and then you get to some form of acceptance, and so on.

But that's not what I'm going to write about today, although if you have questions or comments on how to live with a disease that isn't a disease at all, but instead a condition, I welcome what you have to say.  Everything I learn about how to cope with chronic pain has the potential to make my life better, and I never dismiss shared information out of hand.

Many of you who have arrived here have done so via Facebook, Twitter, or flickr, and some of you got emails.  A few of you probably got directed here by multiple formats, and I hope you will forgive me for that.  I know there are some of you out there that I've made tentative plans with, and you may think that I've forgotten or blown you off, and some of you are going to nurse hurt feelings because you feel like you warrant a phone call.  I wanted to make this as global as possible, and I thank you for taking the time to visit my blog, but right now I do not have the mental energy that I would have to spend reassuring other people's worries.  I'm being selfish and I'm conserving that energy for what I have to do over the next few weeks and months because it could make a huge difference in my life.  I want to be very clear:  this is not going to be a witty little essay about one of the small wonders of life, and if you do not wish to read a serious post about a serious issue, you might not want to hang around for the rest of what I have to say.  Thanks again for clicking through on my link.

Butters says hi.  She actually likes the new condo, but this was taken right before I joined Sean in the city.  Butters missed the couch.  Can you tell?

As I have mentioned in a couple of places, I went to get a mammogram a little over a month ago at Vanderbilt's Breast Center.  It was nothing short of a surreal experience, from the setting (a mall) to the check-in process (a computerized kiosk), to the discussion that I had with the very nice young lady who must be assigned to talk with people who come in with a "concern."  This term was used ad nauseum during my visit, and while I didn't use such a word because that made it seem more sinister, I guess it is an apt enough term to cover the small lump that I felt along the outside of my right breast.

During my conversation with the patient service provider assigned to me, Eve (we'll call her Eve because I don't want to give her real name to the whole wide world of internet weirdness) explained to me that they would skip the screening process with me and go straight to diagnostics because of my "concern."  This meant that immediately following my mammogram, I would go back to their interior waiting room (another surreal experience, because it was located in a revamped department store dressing room, and had a bunch of older ladies sitting around in Vanderbilt Breast Center robes casually perusing home interior and fashion magazines, all while awaiting their turn in the torture chamber), and when the ultrasound technician had a hole in her schedule, she would go ahead and do her thing with me.

During this discussion, I asked what I thought was a simple question -- I wanted to know how much the ultrasound would be -- because I feel like sometimes I'm talked into expensive medical tests that either A) aren't really covered by my insurance for one reason or another and have a more affordable alternative, or B) are totally unnecessary based on information that I've gathered via the internet in an attempt to prepare myself adequately to ask intelligent questions when I actually go in for my doctor visit.  Eve was very reassuring, explaining to me that no matter my ability to pay or my insurance coverage, Vanderbilt was committed to helping all patients in a time of medical need.

So close you can almost smell her breath.  Thank your lucky stars you can't, because Paulie could knock you over with a couple of well-timed puffs in your face.

Unfortunately, this part of the conversation was immediately followed by her explaining that the mammogram order that I had brought with me wasn't good enough to cover what they were planning to do.  My order was marked "screening" and I needed one that said "diagnostic."  Now, I want to explain here that I got this screening order from my gynecologist at the end of March -- she knew I was moving to Nashville, and I discussed waiting until June or July to get my mammogram.  She was okay with that, and actually told me that it would probably take that long for me to get in for a mammogram in Lexington, and I had no "concern" at that time.  However, based on the legal need for Vanderbilt's finest to cover their medical asses (please excuse my language if you wish), they couldn't perform a mammogram on me until a diagnostic order had been obtained because I had noticed the abnormality in the interim three months.  If I had kept my mouth shut about my "concern," they would have performed a mammogram that day, and all of the rest of what has been going on for the past few weeks could have begun sooner.

Whether that is a good or bad thing is still up for debate, but in essence, it doesn't matter.  The outcome was the same.  I received delayed care for something that needed treatment.

I had to wait an extra two weeks to get my mammogram, and if Eve hadn't been persistent and had just decided to shrug her shoulders of the whole matter, I probably would have had to wait another couple of months.  This is due to a couple of issues, one being my recent move, which has led to me having to start all over again with yet another new primary care physician.  I won't see her until October 11, and I scheduled this appointment in the beginning of July.  I have learned an important lesson over the years:  if you want good, quality medical care, don't go to the doctor that can see you right away.  There's a reason they can fit you into their schedule so soon, and it's not just because they are efficient at managing time.

The second issue stems from this learned lesson.  My primary care physician in Richmond, Kentucky, would not write me a diagnostic mammogram.  Instead, I got the royal treatment when I went in to make my request.  First, the window clerk kept arguing with me, telling me that I wasn't allowed to schedule my own mammogram.  I knew this wasn't true -- even though Eve contacted me about setting up a second appointment for a mammogram, she let me choose the date and time, just as I had for the first appointment.

The next argument that the window clerk gave me was just as bad.  (cue snotty tone) The doctor had informed me that it was my responsibility to keep my appointment with my ob/gyn.  Okay . . . that prissy little statement baffled me.  I had kept my appointment with my ob/gyn, MONTHS previous.  I guess she thought that she was really letting me have it, by being so self-righteous.  My problem with that attitude is that by acting like it was the patient's fault for needing something that had come up since that time seems very similar to blaming a rape victim for the crime committed against her.  Seriously, you're a doctor and that's what you instruct the window clerk to tell the patient?  Talk about quality care.  Even if I had missed my appointment, at what point does the Hippocratic oath cease to be in effect?  As far as I'm concerned, this was an attitude bordering on negligence.

The window clerk's last argument, and she delivered this bit with a nice big smug smile, informed me that I wasn't even a patient any more.  I was stunned by this.  It had been only four or five months since I'd seen the doctor, and I thought it a bit precipitous for her to end our relationship after such a short absence on my part.  I asked the clerk why she even thought such a thing, while secretly thinking they probably had me mixed up with another patient by the same name, and she told me that her computer showed that I had requested to be released from care.  Since I never did such a thing (unless I have developed a mental illness that prevents me from remembering such actions), I told her no.  No? she said.  No, I repeated.  I never requested such a thing.

That's when she explained to me AGAIN, that her computer showed my request.

My request to have my records released to another doctor.

My pain management doctor.  A specialist.

I was so frustrated by this time that I said something about their ineptitude at care and I left.  She closed the window on me, after going to get the OTHER window clerk, as though I were threatening her, and acted as though the problem wasn't hers, so neither was the mistake.  Some of you know me well enough to realize my temper can be ugly, but I have to say that as angry as I got, hands shaking, heart racing, when I got in my car, the realization that I would NEVER have to settle for mediocre care again hit me, and the relief that I felt is indescribable.  I wish I could say that my experience with this particular primary care doctor was different than what I've had in the past, but the past three or four GPs that I've had have been equally as bad in one way or another.

Waiting for information is one of the hardest parts that I've faced so far.  I'm not looking forward to some of the other stuff, but at least now I know what's going on.  I have a plan.

I am therefore very thankful to be where I am now, because I need quality care more than ever before.

When I finally had my mammogram, they took the usual three or four pictures, plus some extras.  Then the radiologist looked at the images while I waited in the dressing room/lounge area with all my fellow be-robed compatriots.  She requested some more images.  I want you all to understand that I do not get impatient or huffy about this because I see it as a sign that they are dedicated to getting as much information as possible.  And besides, Vanderbilt gives you these little pasties to wear when you're getting your mammogram.  Who doesn't love a free gift with an otherwise unpleasant medical test?  I really hated giving them up when I went to get my ultrasound.

After my second session in the mammogram x-ray machine (all digital x-rays so 97% safer for the patient than traditional x-rays and crystal clear images), I was eventually handed off to another member of the caring and professional staff at the Breast Center to conduct my ultrasound.  Her facial features reminded me a great deal of the woman who plays the main character on Bones, so it was a bit disconcerting, considering what that character does for a living.  Despite that, I felt like I was treated with dignity and humanity, and I cannot express how much that means to me, after coming from a place where nothing is cutting edge and the hospital would schedule two tests for the same time slot with a mere sheet hanging between two patients.  Nothing says we don't care about you as a person as a lack of privacy for medical tests.

The ultrasound technologist had difficulty trying to get a fix on what she was supposed to image, and brought the radiologist in.  Again, I have never felt like I was getting such quality care, and the best part is that I'm not special in that sense.  I feel like this is the norm at the Breast Center, and not the exception.  The radiologist also had a hard time figuring out what should be imaged, and for the first time, I looked up at the monitor.  I hadn't bothered earlier, because I had an ultrasound of my right armpit a while back and I really couldn't tell anything even though the technologist during that procedure tried to explain to me what she was imaging.

I know I have a dark sense of humor, but I swear to you that this was lying in the mammogram waiting area.   Not too sure who the intended audience is, but I have never seen a child hanging out back there.
 Gimpy's Secret . . . It's What's Missing

During this test, however, I felt like I could sort of see something, and what I saw was unsettling.  I have been feeling a lump similar to a jelly bean, but what I saw on the screen looked more like a much bigger, oblong-shaped mass, with seaweed-like tendrils reaching outward.  Based on the very limited amount of research that I had done thus far, this seemed like a bad sign.  The radiologist told me while she was in the room with me that they would go ahead and schedule me for a biopsy because there was definitely a new thickness that had never shown up in any of my previous mammograms.  I cannot say it enough:  having the radiologist herself, the one who was reading my films, tell me what she saw, was so comforting, despite it prompting the need for yet another test.  I got dressed, met with another woman who handles the scheduling of this level of testing, and left for the day.

A week and a half later, I had my breast biopsy, and it was performed by the radiologist that I mentioned above.  Her first comment to me was, "I don't know if you remember me, but . . ."  When I get care like that, I don't forget who provided it for me, and I was again reassured by the very personal, hands-on approach that seems to permeate the attitude of the Vanderbilt Breast Center.  The biopsy was preceded by my opting to participate in a research study that's trying to create a blood test to determine if breast cancer is present in a patient's body.  I authorized the collection of blood, urine and left-overs of my biopsy tissues.  That might not have been the best decision short-term, because I am not as good at handling medical stuff first thing in the morning.  While the radiologist was taking my samples, I almost passed out on her, and it was only through sheer force of will that I managed to remain conscious.  I'm almost certain that this resulted from the three vials of blood that they took and not the procedure itself, although I have to admit that it is disconcerting to know that someone is using an implement similar to a piercing gun to take out core samples of your flesh.

I asked when I would know the results from my biopsy and found out it could be by the end of the week, but would probably be on Monday or Tuesday.

They called me Friday morning.

The results of the biopsy came back as showing breast cancer.  I have known since I was 20 years old that this day could be a reality in my future, and it has been one of my biggest fears for so long that I can't even describe how much of my life it has affected.  With each year that has brought me closer to 40, the more I began to believe this was a bullet that I might be able to dodge.

As it turns out, I am now living with the same disease that killed my mother in a span of two years, and I know I should be more frightened now than I ever have been before.  But, and I want to make it very clear that my life will be no bed of roses for the next year, I have a dedicated team of specialists to help me through this rough bit.  Today Sean and I met with my surgeon (the director of the Breast Center) and my medical oncologist, and I feel so very lucky to have both of them.

Now, for the bad news -- I want to get it out of the way first.

1)  I am 40 and pre-menapausal.  Everything that I saw online before I went in for my consultation led me to believe that my prognosis would be bad, and it sort of is.  I am not going to sugar coat this for anyone, because I want you all to have the facts as I got them.  I have infiltrating mammary carcinoma, which is your "run of the mill" breast cancer.  I put that in quotes because the doctor specified that while 80% of all breast cancers fit in this category, there are things that distinguish one tumor from another.

2) My tumor is HER2 positive.  Five years ago, this would have been very bad news, and while it's still not the least likely type of tumor to kill me, there are actually some pluses to having this type of tumor today.  I'll talk about that in just a minute.

3) My tumor is an aggressive cancer.  It is also in the mid-size range, which means it hasn't been detected as early as one would hope for.  For those of you who are going to google the heck out of this, in medical terms, my tumor is "high" grade.

4) According to the MRI that I had done a couple of days ago, there is the possibility that some of my lymph nodes could be affected.  This is another less favorable factor.  In addition, the MRI showed a spot (very small, but there nonetheless) away from the main tumor, and this is also less than ideal.

 I may be missing a fact or two, but that's the general picture right now. You have to understand, I was visiting doctors from 9:00 this morning until around 2:30 this afternoon, and because of what they saw with the MRI, I also had another biopsy today, this time of a lymph node.

I know some of you are probably upset by all the negatives and I can't pretend that they thrill me.  If I could run away and avoid this, I might do just that.  But you only get one life to live, and you sort of just have to learn to live it as you go, and get out of the mentality that life will start when you finish this one thing, or reach that other milestone.  Because of this, I decided a few years ago that all of it, good, bad and ugly, had to count in my life, and while I'm not going to talk about living with chronic pain, it was that situation that made me adopt this attitude.

It wasn't all bad news today.  Just sayin'.

Now for the good news.  If you've managed to stick with me so far, kudos to you, and you deserve something positive to round out what you're reading.  The way I've structured this post is not by accident, but rather by design -- teaching is sometimes about knowing where to get in the most important information, and research shows that we remember the beginnings and endings the best.  So I'm ending on the good stuff.

1) My tumor has positive estrogen/progesterone receptors.  This is a factor that is very much on my side.  It has something to do with the way these receptors indicate the effectiveness of drugs that treat cancer, but I can't remember all the details. This is good news because it means that certain types of drugs can be used to treat my tumor, and these drugs have a pretty good track record.

2) That HER2 status that I mentioned above in the bad category?  While it would have been a death sentence just a few years ago because there was really no good way to treat it, this type of tumor is now considered curative because of a miracle drug that has been developed over the past couple of years.

3) Other than what was found near the lump that I detected, the rest of my breast tissue is considered clean and healthy.

While the good list is shorter than the bad list, both my doctors classify my cancer as curative.  This could change, of course, and I still have to get results on my lymph node biopsy, live through the treatments (I don't even want to talk about the negatives of those today), and undergo a PET scan which will show if this cancer has been sprinkling my body full of bad cells.

Assuming that the PET scan is clean, my doctors are going to treat my cancer on two levels:  locally and systemically.  I will likely have a mastectomy based on the size of my tumor and the suspect lymph nodes, but that is not for at least 5-6 months yet, because I will begin chemotherapy and targeted therapy first to see if they can both manage and even shrink my tumor before surgery.  Yes, that means my hair will fall out.  No, I don't really care all that much.  Besides, I got a prescription for a "cranial prosthesis" which means that I get to get a wig, and I'm thinking I'll go for something I've always wanted, rather than what I've always had.  And all those prop wigs I have for photographs might actually fit on my head now.  Nothing says, "I'm hot," like a purple bob, right?

If only I had the purple wig on here, but alas.  I am still sporting my own hair for the time being.

Right now I just need to live on a hope and a prayer, but I will post regularly as I become more informed.  Chances are I am not going to be the happiest person in the room for quite some time because I'm not going to feel very well, but I'm doing my best to just keep to normal for now.  I still walk the dogs every day, I still sew when the mood strikes, and my camera is within reach.  But I'm extremely lucky that I am not working, I am not in school, and I can focus almost exclusively on getting better.

If you have questions or comments, please feel free to send me a message or comment below.  Your questions may be something that I haven't thought of yet, or I might actually have the information but just forgot to include it here.  While I'm grateful for all well-wishes, I would ask that you not call.  I am terrible on the phone on the best of days, and right now I just don't have it in me to carry on an upbeat conversation if the focus is my cancer.