Tuesday, August 31, 2010

Guest Post - Diana Raab, Author of Healing with Words - and a contest!

Diana Raab has written a book about coming to terms with DCIS. She wrote a book chronicaling her emotional struggle. Interspersed with the book are writing prompts designed to help people put their thoughts about a cancer diagnosis on paper.

Here is what Diana has to say:

Breast cancer affects one in five women. I never thought I’d be a part of that statistic, particularly since there’s no breast cancer in my family. I did have breast cancer and I am now moving on with my life. I will tell you how I coped.

One of the physical drawbacks of having had a mastectomy and reconstruction is the degree of deformity and how you feel about your sexuality. It helps to have a supportive husband, partner, friend or confidant to confide in and talk to. Journaling your feelings also empowers you and relieves stress. Plus, it’s really cheap therapy and guess what? The journal does not talk back and that’s a real bonus.

Following my surgery, I felt quite unattractive. My surgeon had a great suggestion, “Just go out and buy some provocative clothes, and you’ll see how much better you will feel.” He recommended I first wear them around the house and when I was courageous enough, to wear them out. I followed his instructions and found him to be absolutely right. My husband also enjoyed this exercise!

Another difficult part of having had breast surgery, was the complete loss of physical sensation on the surgical side. It’s very weird because you are left with no erotic sensation at all. The nipple and surrounding area are completely numb. According to my plastic surgeon, over time, some women do get some of the sensations back, but the good news is there’s always the other side!

In the days following my diagnosis with breast cancer, I needed ample time alone for reflection. Sometimes I’d just sit in the backyard writing about things I might never want to share. Other times, my journal entries actually became published articles to help other women cope with their own demons and issues about breast cancer.

As a nurse-writer I teach journaling in the community and believe it is a critical component for emotional healing. I’ve been journaling since the age of ten when my mother gave me my first journal.

The day I was diagnosed with breast cancer, I began to chronicle my journey. As time went on, my journal entries evolved into a self-help/memoir, Healing With Words: A Writer’s Cancer Journey which was released in June 2010.

Many women have used journals to record their breast cancer experiences, either to share with their families or to refer back to at a later date. Some of these journals or books have been published, such as those of Audre Lorde, May Sarton, Betty Rollin, Rose Kushner, Hilda Raz, and Elizabeth Berg, to name a few.

I also decided to allow my breast cancer journey to rivet me in a positive way, using the journey to inspire me to higher grounds. I earned a graduate degree and decided to remove all toxic people from my life. I now surround myself with those who are uplifting and make me feel good about myself. For me, now, it’s all about celebrating life. In the journaling classes I teach at UCLA Extension and at conferences around the country, I work to inspire others to do the same!

I read Diana's book.  It is very well-written, and when she describes the tests she went through to determine her DCIS diagnosis, I found myself nodding my head.  However, some of the facts in the book seem to differ from what I understand to be true.    Diana's reaction to her DCIS diagnosis was pretty much the polar opposite of my reaction when I discovered I had cancer, which made the it a bit hard for me to relate to her. But, as you all know, I express my emotions with sarcasm, so that's to be expected.  I'm certain that this book will be quite helpful to anybody who is either newly diagnosed or who is undergoing treatment, and who needs a way to get their emotions on paper.

The good news is Diana's publisher is giving away a copy for one of you lucky readers!  Please post a comment below and I'll draw names.  The contest ends Saturday by 8:00 a.m. California time.   If you post anonymously, you can still win, but please put something identifying in the note, and you will have to give me your name and address to give to the publisher.

Thank you, Diana, for wanting to help other women with breast disease.

Saturday, August 28, 2010

For technical assistance......

This post is going to go down in the annals of Too Much Information  And, while my blog history has quite a few TMI moments, somehow, when they involve the boobage area, it doesn't seem so intimate.

Everybody loves boob(s).

It's different when you are discussing the bottom end.   I have never felt as sorry for my colorectal cancer blogging counterparts as I do now, because the subjects they need to discuss can be pretty uncomfortable.  It can't be easy being a booty blogger.

I started thinking about why that is.  I mean, after all, "everybody poops."  Why is the subject taboo?  I think our distaste for the topic goes back to caveman times, when the very act left you exposed.  When a saber-toothed tiger could be behind the next tree, ready to pounce, taking the time out to squat in a position you can't immediately get up from seems fraught with danger.

Humans don't like to discuss their vulnerability.  Especially when it smells bad.

Of course, some people can react to the aforementioned tiger threat quicker than others.  I, for example, have never needed to take the sports page with me to the bathroom.

I do like my fiber.

The name of the test I just had to "do" is called the Hemoccult Sensa, which sounds like something Woot would sell at a discount.  However, Woot, one of my favorite online shopping places, sells high tech and super fun gadgets you can't live without.

This sensa test is pretty much the exact opposite of that.

The purpose of the test is to detect blood in your stool.  Since my blood levels are all over the map, and since I have been too busy dealing with breast cancer to get a colonoscopy (can there be a better excuse?)  it's a quick - albeit disgusting - way of finding out if I have any bleeding polyps, colon cancer, or any blood in my guts.

The kit consists of a little cardboard packet with three spaces that open like an envelope.  On each space, you write your name, your address, your date of birth, and the date of sample collection.  When you open the envelope, there are two squares there, where you are to paint your sample. You are supposed to take three samples, three days in a row.

Since bad things come in threes, you also are not allowed to eat red meat for three days prior to taking these samples.

In the kit, as a sort of bonus prize, are three wooden sticks, three sheets of wrapping-paperesque tissue paper, and instructions on how to do the deed, aka take the sample.

In case you haven't guessed by now, you catch your poop, dig some up with a stick, and spread it on little test strips on the sample kit.  Not only do you do it once, but you have to take a sample from a second spot.  Your stool will be thoroughly examined by you, probably for the first time since you were 9 months old.

At least, I sincerely hope it's the first time since you were 9 months old.

My nurse, when handing me the kit, suggested that the best method for sample collection was to put saran wrap over the toilet bowl and then to go about your business naturally.   Your prize will be waiting patiently on the saran wrap for you to use your probing stick, and then you simply dump and flush. 

So, three days after eating only chicken and vegetables, I got up in the morning, grabbed my box of saran wrap and hit the bathroom.

Day 1:  FAIL.  Saran wrap is slippery, and it covers a toilet bowl as well as it covers a plastic food container.  Lesson learned.

Day 2.  I tried the same thing with the tissue paper included with the test.  Success! 

Day 3.  Tissue paper again.  FAIL!  Apparently, a high fiber diet is a bit powerful for the thin paper I was given. I was left looking down at a hole in the tissue paper with blue water beneath. 

Day 4.  Augment tissue paper with paper towls.  Success.

Finally, when I was all done and ready to mail the package (my deepest apologies to the best mailman ever, Chuck) I noticed a slip of paper inside the mailing packet.

For technical assistance, call 1-800 Beckman Coulter or email askpcd@beckman.com


I could  have gotten technical assistance?

Which part would they have assisted with?

"Thank you for calling technical support.  All of our technicians are currently helping other people.  In order for us to better assist you, please listen to the following choices:   Press 1 if you accidentally ate a Porterhouse last night and don't know what do to.  Press 2 if you lost your little sticks and want to know if you can substitute a toothbrush.  Press 3 if you find the whole process disgusting and need us to talk you through it.  Press 4 if you are a mailman upset about carrying the completed test kit in your bag."

Curious about what kind of technical assistance they provide,  I went to their website to look for a FAQ.  I found a section intended for doctors. Not only do they provide technical assistance, but they also have patient sample collection videos that are supposed to help "drive compliance."  In the video for a test kit similar to the one I had, a woman  walks us through the process, from start to finish, ending with her walking her dog up the steps to her house, secure in the knowledge that she avoided having her yearly colonoscopy.

In the video, they actually suggest using a "clean" milk carton as a collection tub. Alternatively, you can use a pie tin.

Speaking of TMI, this video is pretty, um, descriptive. I wonder what they used for the brown parts?

It's not unusual for people who have had chemo to have crazy blood levels so I have no worries anything will be found when the results come back. But, I think that if I ever need anything like this again, I'll just do a colonoscopy.

At least they put you to sleep.


Saturday, August 21, 2010

Leaking Blood

I went in for my herceptin/oncology appointment Wednesday.  It may sound shocking, but I look forward to these appointments.  I get to see people I like, I get to sit and rest for an hour without having to do anything, and I don't mind the needle stick.

Not everyone feels the way I do, but just like a school cafeteria, the like-minded sit together.  The people who treat it as a social event are on one side, the sleepers are in the middle, and the frightened or upset are on the other end with the nurses.

I was thrilled to see Bert and Jeannette.   Jeannette was in for a checkup, and came back to the infusion room to visit.  She looked great  - her hair was down to her shoulders , and she looked vivacious, healthy and happy.  She had dyed it stark black, which I think is aging on a 77 year old woman, although I did not tell her that.  She wasn't too thrilled with my gray hair  (which she did tell me: "Why do you want to look old?" ), so we are even.

It was so nice catching up with them - old home week on the oncology ward. Bert told me all about the zucchini soup he'd made with vegetables he got as a volunteer for the Senior Gleaners.  They talked about pies they'd made and how Bert grows rhubarb in his garden.

Jeannette is coming back in a month to get her port out and I hope our appointment times coincide - I should have asked.

When it was my turn to see the doctor, my opening comment is always and forever the same, "I hate tamoxifen."  He knows why, but I won't let him forget; he needs to share in the pain too.   He recited my options again - removing my ovaries, or going on an AI - all which will have the same side effects.  I declined, again,  and we got on with the rest of the appointment.

I  did ask if the joint pain I was experiencing was permanent - it feels like it is going to be.  If I sit cross-legged and try to stand (which I've always been able to do) my knees are so stiff I have to hold on to something to support myself.  But, he says it's not permanent.

I'll let you know four years and seven months from now.

My blood has still not recovered and at almost five months out of chemo, it should be back to normal.  I'm still anemic and my red cells are abnormal and my whites are still a little low.   My oncologist says that it's probably nothing, and I believe him.

But, they are going to do tests to be sure.

Nobody ever told me that once you were diagnosed with cancer they want to continually test you for more.

If it's not nothing, then what is it?  It could be that my body no longer absorbs B12, due to damage from chemo, which means I might have what is called pernicious anemia.  That would explain the sudden numbness I've gotten on the tips of my fingers that I thought was chemotherapy-induced neuropathy. It came on a couple months after chemo, which is weird, but now there is an explanation.    If that's the case, then I would have to get vitamin B12 shots on a regular basis. They took some extra blood to test for vitamin deficiencies.

I could also be leaking blood, so they are going to test me for colon cancer.   Actually, I'm going to test me for colon cancer.

I'm not worried that I have colon cancer at all, so don't you be either. 

What I am worried about is the test I have to do to find traces of blood where blood isn't supposed to be.  It involves three days of no beef,  a little card, some wooden sticks, and a strong stomach.  "nuff said.

Besides, I can't have colon cancer.

But Doctor, I Hate Brown is a terrible name for a blog.


Tuesday, August 17, 2010

A Letter to the Newly Diagnosed on my One Year Cancerversary

Dear Newly Diagnosed Breast Cancer Patient,

I was diagnosed with breast cancer one year ago today.  August 17th, 2009.  On this cancerversary, I thought I would share some wisdom with you.

The first thing you need to learn about a diagnosis of breast cancer is that you have to learn stupid terminology such as "cancerversary."

Most professions have their own lingo:  in schools, we SARB people, in IT they "image" computers, in Hollywood, the electrician is called a Gaffer.   Why an illness has its own terminology is a mystery - but you will learn it.  Instead of recovering, you are a Survivor.  You don't heal,  you have a "New Normal."  You have foobs and fipples, have rads and get chemo curl. 

I don't know if any other illnesses have their own phrases, although I have a friend with cerebral palsy who sometmes calls himself a gimp. My suggestion is to learn the vocab so you won't be out of the loop, but try not to use it in polite conversation.  Discussing your fipples with your mailman is only going to lead to confusion.

The next thing I would like to share with you is that the fear and shock you feel right now will pass. One year  ago today, I felt it too.   I know it doesn't seem like it will ever go away, and I know you feel like every nerve ending in your body is made out of high voltage wire.  You will eat, sleep, dream, and think about nothing but Cancer for quite some time.

I'm sorry to tell you that you will become a bore, because it's all you will talk about.  God help anybody who asks how you are doing, because you are likely to tell them.  In detail.  If somebody cuts you off in traffic, you will be outraged, "How dare you?  Don't you know I have CANCER?"

But, as they say, this too shall pass.  It will gradually become just a disease you are dealing with, like diabetes or high blood pressure - an inconvenience, but one you can manage.  It's hard to understand that during the early days, and I know you don't believe me now, so you'll just have to trust me. 

The worst part of a cancer diagnosis is the uncertainty, and the worst part of the uncertainty is at the beginning.   You are facing an illness that can take your life.  You are facing medical procedures that are unknown and pretty damn scary.  You may be facing the loss of a body part or two, or even three, counting hair.  You don't know what any of this is like: how you'll feel, how you'll react, how your family will deal with it.  All you may know is what you've seen in the movies or on TV.  You likely will have many sleepless nights, and be on an information hunt/overload for weeks, if not months - all to try to know what will happen to you - to see into the future.

At some point though, you will come to terms with the fact that knowing the future is impossible, and living with the day you have is all you can do.  You will find peace in that.

Looking back on my cancer treatment, do you know what I remember?  I remember Bert and Jeannette and laughing in the infusion room.  I think of Lynn and my chemo nurse, Joe.   I think of my oncologist's funny ties and kind eyes.  I'm still in active treatment until December, and in a way, when it's over, I will miss going in. 

I also think back on the support of so many people - finding surprises like fabulous shoes or a snugli on my doorstep when I got home, or the meals my workmates contributed towards.   I remember Sue, my chemo Angel, who sent me lovely surprises, and Kathy, who tied a ribbon around a tree in my honor, or Dana, my student nurse who treated me with loving care.

Thinking of heartwarming events like that take away any exhaustion you may feel at the moment.

I wish I'd known when I started that the loss of a breast is meaningless.  My breasts were my best feature, I thought.  I proudly carried them, and dressed around them,  and I felt that they made me beautiful.  I was devastated at the thought of losing one.  Yet even with only one left, and the deformity on the other side, I still feel every bit the woman I did before.  My missing breast nursed my babies but in losing it, I find I can be with my babies longer.  I don't feel, as many do, that my breasts tried to kill me and so they had to go.   To use the omnipresent war comparison - I felt that they were the battleground which had to be sacrificed for the greater good. The land is scarred but the soul survives.

There is a lot of controversy about having a positive attitude. A positive attitude will not change the course of your disease, nor will it cure you, nor should you feel required to put one on all of the time. Someone asked me if a pessimist can beat the disease, and the answer is yes.  It's medical science that cures cancer, not attitude.

However, if you can learn to see the positives, the humor, the blessings even, that come from this disease, than your treatment course will be easier on you.  I believe that without a doubt. Some of the treatment won't be fun.  Some may have long-lasting side effects.  But, life goes on, and you have yours.  Dwelling on the negatives, overlooking the good things, is, in my opinion, wasting your new life.

A diagnosis of cancer will change you.  It may always be in the back of your mind, and yes,  nervousness and fear will again pop-up around testing times, but you will learn to manage it and eventually take it in stride.

And, here's the thing:  it's up to you whether cancer changes you for the better or not. It's entirely in your control.  You can't alter the fact that you have the disease, but you can choose how you react to it.

I want to tell you that I'm very sorry that you have to go through this.  But, as horrible as it seems now, it will bring blessings to your life that you never expected.  My advice? Look for them, even if it seems impossible.

Especially if it seems impossible.

Because, they are there.



Sunday, August 15, 2010

How would you like to receive the news you have cancer?

There are times when I feel sorry for doctors.  I imagine telling somebody they have cancer probably isn't the most pleasant aspect of their job - in fact, it's probably right up there with disimpacting bowels.  (Yeah, I know they pawn that off on a nurse.)

I've heard many a discussion about the ways people got their news.  Some people are told over the phone and are upset at the impersonal nature of the method, and some are called to the doctor's office, already knowing something is terribly wrong, that it's probably cancer, and then having to go through the agony of waiting for the appointment, driving to the office, sitting in the waiting room. 

I was told immediately after my sonogram by the radiologist.  I was already sure I had cancer, so was grateful to have it confirmed that quickly.  It's relatively unusual to be told that way - radiologists like to be certain and the common saying is "until the cells are on a slide, you can't be sure."  However, I think in some cases an experienced radiologist can be sure - and my radiologist was.

After he sent the pathology results to my primary care doctor, I called to find out what kind of cancer I had.  He told me it was invasive over the phone - which again, I was grateful for.  He faxed the results to me and I was able to study the terminology before meeting with a  physician to discuss my treatment plan.

To me, the hardest part of this disease is the uncertainty and the waiting.   Finding out the way I did meant I had time to get over the shock before I met with the breast surgeon.   I could google, I could read books, I could find other cancer patients and educate myself a little.  When I finally sat down with my breast surgeon, I had some knowledge and had better questions to ask than "Um.....are you sure?"  I wasn't wasting his time, or mine, by being stunned and trying to absorb the news and come up with an intelligent question when I knew so little about the disease.

Some people though, seem to prefer to be called into the office and told in person.  They need that comforting authoritarian presence, the feeling that somebody cares.  I have heard many people say that they find it cold to be told over the phone. 

Oddly enough, most of these people also say that they were in shock after hearing the news and didn't absorb much of what their physician told them.  But, they did feel better about being in the presence of a doctor, even though they didn't have good questions to ask.

Some have said that they thought the physician who told them rushed through the news and looked bored.  I've heard stories of doctors looking at watches and around the room while they tell somebody they have a serious illness..  Everybody remembers where they were when they heard Kennedy was shot, or when 9/11 happened - those of us who had cancer also remember forever the moment we got the news.  So, if you are a doctor who is easily distracted or has a habit of checking his watch every few minutes, I suggest you not during this particular conversation.

I think the best way to make everybody happy would be to ask the patient when setting up these tests.  "Okay, we have to do a diagnostic sonogram and mammogram on you - if the results do come back malignant, how would you prefer to get the news - by phone or in my office?"   I think that would cover it and make everybody happy.

Except of course, when you get that call to come in - you know what it means.  So, unless you want to go in to hear "nothing is wrong" I guess there really is no perfect way.
How did you get the news, and are you grateful at the way it happened, or did it upset you?


A quick note and apology;  I'm sorry I have not updated this blog as frequently as I have in the past.  I started my new job and it's been an exhausting, but exciting, adjustment.  I'm still dealing with tamoxifen side effects, so by the time I get home, I'm just ready to rest or sleep.  However, once school starts (next week) and I get in a rhythm, I'll be back too my old ways and frequent updates, so please bear with me.

Monday, August 9, 2010

Hot flashes

I had 19 the other day.

How do I know?  Let's just say there is an iPhone app for everything.

I've been trying to think of a way to describe hot flashes so those of you who have never had one can understand.  The best way I can describe them is that you feel like you are blushing lava.

I thought I had experienced them before tamoxifen.

I was wrong.

Wednesday, August 4, 2010

An article you should read

I love this brilliant writer. Not to mention that  I have the exact same bookshelves that are behind him in the photo.

Christopher Hitchins on his cancer diagnosis.

Just a taste: 

The oncology bargain is that, in return for at least the chance of a few more useful years, you agree to submit to chemotherapy and then, if you are lucky with that, to radiation or even surgery. So here’s the wager: you stick around for a bit, but in return we are going to need some things from you. These things may include your taste buds, your ability to concentrate, your ability to digest, and the hair on your head. This certainly appears to be a reasonable trade. Unfortunately, it also involves confronting one of the most appealing clich├ęs in our language. You’ve heard it all right. People don’t have cancer: they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if one might reasonably say of someone that they died after a long and brave struggle with mortality.

Tuesday, August 3, 2010

Tamoxifen Nights

At 10:30 I go to bed. It's a work day and I have to get up early. I decide to read a bit to relax. As I open my book, I begin to feel warm and sleepy.

Very warm. Very, very warm.

Oh shit, it's another hot flash. I read through it, dewdrops of sweat glistening off the hard mound of my tissue expander.

As the heat dissipates, I check the clock. It's 11:00, and I am beginning to get chilled, so I pull the covers up to my neck, pet the cat who has begun meowing, get comfortable, and turn out the light. At 11:04, another hot flash hits. I pull the covers off and turn the fan I have on my nightstand so it blows right on me. My skin soaks up the cool air. A few minutes later, when this hot flash lessens, I fall asleep.

11:24, I wake up, chilled from the fan. I pull the covers up to my neck again, and turn to lie on my stomach, which is easier on my aching hips.

With a tissue expander instead of a breast, lying on your stomach is like sleeping on a beach ball, so I prop pillows around the expander to try and get some balance. The cat curls up near my side, and I fall asleep again. 12:30, I wake up. I'm burning hot yet again, so I throw the covers aside, causing the cat to jump to the dresser. I look at the clock, and then turn to my left side. My hips are hurting pretty bad, and I put a pillow between my knees to try for balance.

I lie there, thinking about work the next day, chores I need to do, how much my body aches, how much I need to sleep. I try to get comfortable, using pillows as props.

At 1:43 I'm still awake. I wonder if I should start to read again since I'm clearly not fucking sleeping any time soon, but I decide not to. I pat the bed to convince the cat to come off the dresser and come sleep by my side. She gingerly steps down, and I pet her for a while. I make a little cave with the covers so she'll crawl inside and sleep beside my belly. My formerly feral cat finally does, and curls up next to me, purring. I pet her as another hot flash hits.

Now I have a problem. I really need to get those covers off me RIGHT NOW but I pretty much convinced the cat to come off her perch and cuddle with me. I debate - can I stand the heat? Is it fair to the cat to move the covers? As the heat builds to sauna-like strength, and my heels start to sweat, comfort wins out, and I rip the blankets off.

The cat jumps back on the dresser.


I turn to sleep on my right side, and feel the expander valve that is pushing through my skin dig into the mattress, and I vow - once again - to go buy a memory foam mattress pad to try and soften my night.

I look at the clock. 2:37.

At 3:33 my husband gets up to go to the bathroom, and as he opens the door I realize I had been asleep and am now awake.

And sweating. Covers off. I put my arm by the fan so the air will travel down to my chest.

It's 4:00 in the morning and I have to get up at 6:00. I don't have sleeping pills, but I decide to take a fioricet, a medicine I have for headaches. Although it has caffeine in it, sometimes it makes me slightly sleepy. It's worth a try - I can still get two hours, right?

4:15, I get into bed again, hips and legs and shoulders and back aching and wondering if if I should have taken a pain pill too, but I don't want to take the two kinds that close together. I take pain pills when I wake up, so I'll just wait.

Again, I prop myself with pillows and try to sleep on my stomach. At 4:30, I decide to turn ocean sounds on my iPhone and see if the rhythm of an endless loop of fake waves can lull me to sleep.

6:00, the alarm rings, and startles me awake.

I hit the snooze button and fall asleep again instantly. Ten minutes later, I do the same. And again. After the fourth time, I know I have to get up or be late for work and I've already missed my shower time, so I don't hit the snooze button this time. I pull the covers back and swing my aching knees over the side of the bed, knowing that now I could sleep for four hours straight.

As I wearily get up to go to work, I think that maybe if I start my night with an alarm and a snooze button, I'll get a deeper sleep.

The cat glares at me balefully from the dresser.

Tamoxifen has wrecked both of our nights.