Cancer Journey

Note: if you ever wanted a breast reduction and have just been diagnosed with breast cancer, please do yourself a favor and read this piece in its entirety. I wrote this especially for you.

Ever since my teens, I have had big breasts. No, not "big breasts," but very big breasts. At age 17, my breasts were not even finished developing and I was a size 34DD. All grown-up and at my best weight and state of physical fitness, my cup-size was an FF... if I ordered from a certain company in England where their sizing ran larger. For at least ten years, I've hovered between a G-cup and an H-cup, all depending on the brand.

Some women might envy this, but please, don't. Having breasts this size has brought me no end of physical and emotional pain. My life has been affected by the size of my breasts in ways I can't count. I know plenty of uber-busty babes are reading this and nodding: you know it isn't fun.

In my case, I've dealt with chronic back, neck, and shoulder pain since I was 16 years old. By chronic I mean that I hurt every single day, and sometimes the pain makes me cry. I've tried to find ways to treat the symptoms, but chiropractic work, massage therapy, and Western medicine have never been able to reduce the pain. Weight lifting helps a little bit. Acupuncture helps a lot more. But nothing can "fix" the pain as long as my breasts work against me.  Read more »

As predicted, my update on my visit to the surgeon is anti-climactic (and Lisa, you're right - that's ideal for doctor's appointments and air travel). Hysterical amnesia it is! That is to say, my surgeon isn't worried about the lump on my right breast and thinks it is scar tissue. I figure, she's been doing this longer than me, so I will trust her on that.

My left breast, of course, is just plain acting out. She said that on large-breasted women, radiation sometimes makes the breast tissue reluctant to heal, and that seems to be what's going on. Her advice was to put a lot of antibiotic ointment on it, bandage it, and wait for it to close up again. (I did not ask if it might re-open again, because...well...I want to assume the answer is no and never think about this again.)

"We should probably do a round of antibiotics just to be safe," she added, before wrapping up.

So, as expected, I'm back to taking Keflex, the antibiotic that smells like poop. I wonder if I'll catch Lola trying to bury the bottle again? I wouldn't blame her if she tried!

Oh, and...I didn't get a mammogram; I'll do that in a month, when I see the surgeon for a re-check and get my follow-up with the medical oncologist. Until then, I appear to be clear! Except, of course, for my left breast, which it appears I can't take anywhere.

Thank you to everyone who sent me good wishes. That means a lot to me.

(Note: parts of this are not for the squeamish)

Last Tuesday, after I left a message my surgeon's office about the new lump I found in my breast, I got the best customer service ever from UCSF. I know I bitch about their horrid customer service all the time, but this time was different. My surgeon's nurse called me back within 30 minutes of my message, and within 10 more minutes, she called me back with an appointment for the following Monday (today). That's lightning fast compared to anything I've experienced before.

However, by Tuesday night, I decided that I had made a big deal about nothing. The lump, which is not on the breast that had cancer, is close enough to the site of a surgical biopsy to be scar tissue. I have no idea how I never noticed this scar tissue before, because I certainly noticed the scar tissue on the other breast. But, you know, I bet that's what it is and I'm just suffering from hysterical amnesia.

As soon as I figured this out, I thought, oh, gee, this is going to be so embarrassing. I am going to waste my surgeon's precious time, having her check out a non-suspicious lump that I magically never noticed in the two years I must have had it. I am insane!  Read more »

Saturday morning, out of the blue, I started thinking that I might get cancer again. Actually, I was convinced of it and in no time my thoughts became a runaway train, rocketing down a track that quickly wound from my diagnosis to my sad, eventual death.

Those of you who know me well also know that this is very unlike me. When going through cancer treatment, I never once thought I was going to die. Not even when first diagnosed. I rolled my eyes at anyone who suggested such a thing. But this Saturday? That clock was ticking!

My rational mind tried to get a word in edgewise and point out that perhaps PTSD might be influencing my thoughts. Perhaps I might want to take some anti-anxiety medication. But I ignored rational thought, instead making notes on where I might want to have my ashes scattered and thinking, wow, I better start cleaning house. (Because in my mind, whether you are going on a short vacation or going on the Big One, that's what you do first: clean house.) I better leave instructions. I better do some repairs around the house. And what about all those boxes in the garage? I can't leave Kathy to have to sort through those! Maybe I should just dump them all. What to do, what to do....

Oh no, stress isn't getting to me. I am cool as a cucumber. Yep.  Read more »

Warning: This post contains mild gynecological talk of the hand-waving variety, accompanied by impassioned medical system rants. Reader discretion advised.

For most of my adult life, I've taken gynecology appointments as a fact of modern womanly existence. As much as I've always wanted to be somewhere other than "stirrups-up" in the OB/GYN office, obsessing about whether I remembered to shave my legs that day, I made my annual visits a priority. I figured that this is just what you do. And being a complicated woman-type with all those fancy internal parts, there were plenty of opportunities, outside of annuals, to count the indentations in the ceiling tiles while having my U-joints and gaskets re-checked. Or to blush coyly while asking if this or that is supposed to happen when...well, somebody did that other thing. A-hem.

The joys of being a girl are endless.

While I had great compassion for my friends who found OB/GYN appointments stressful or even terror-inducing, personally, I didn't have that much anxiety associated with these visits. True, I kind of wish they would at least buy me a drink before taking such liberties with my vital controls, and I kind of wanted a shower afterward, but...whatever. You do what you have to do.  Read more »

If you were to meet me during cancer treatment, you might be misled about my approach to cancer. Given the flamboyant wigs I wore, the way I'd cheer up other patients and entertain the medical staff, you might think I was one of those folks who believed the great cancer myth of positive thinking. You know, the one that says,"You have to keep a positive attitude if you want to survive this disease. Attitude is everything."

I'm here to tell you attitude is not everything. It is so not. I'm just naturally perky, with cancer or without. And this has nothing to do with my status of being cancer free.

But the Positive Thinking Brigade would like to congratulate me, nonetheless. They like to point out that I am a sterling example of how with love, gratitude, and giggles, one can overcome even the dark specter of cancer and go on to live the good life. I am an inspiration.

Oh, please. I'm not that stupid. If having a positive attitude led to overcoming cancer, a whole bunch of lovely, upbeat people would not have died from the disease. Mean, bitter people would not have lived. Yet they have!  Read more »

When I had my frozen shoulder, and then shortly after that when I went through cancer treatment, medical professionals seemed to always be asking me about my level of pain. They'd say, "On a scale of one to ten, how would you rate your pain?"

This question always made me crazy because it sent me into a tailspin. I'd never say ten because, well, it could always get worse, right? I mean, someone could shoot me in the gut at close range and I could be bleeding to death slowly while trying to tuck my insides in, and that would probably hurt worse, right?

Just as the meaning of "ten" eluded me, I never got the "one" right, either. Kathy was with me when a nurse asked me to rate my pain during an allergic reaction and I weakly murmured, "I don't know...six?" Kathy heard to the reedy sound in my voice, looked at the way my hands were clenched on the arms of the chair and my eyebrows knit together while the sweat broke out on my brow, and she rolled her eyes. Once the nurse was gone, she talked to me about my rating and pointed out that "one" didn't mean "I'm hurting but I think I can cover it up okay." One meant I'm okie-dokie. And thinking I might scream the next moment? That was pretty high up there. Maybe even higher than six.  Read more »

For the past few days my left pectoral muscle has been super-sore. While it could be caused by that 200-lb, one-armed bench press session I did on Friday (ha!), I can't help but wonder if it's more about last week's mammogram. It's the only imitation I've done of a contortionist of late...at least, that I can recall.

I showed up at the diagnostic imaging department early, before they had re-opened after lunch. While I was the first one in and finished my questionnaire at breakneck speed (do I really need to repeat my breast history to them every six months? Don't they keep any records?) I wasn't called until a half hour after my appointment time. That meant that I got to wait in the antechamber for another twenty minutes, clutching a too-big gown around me.  Read more »

A year and a day ago I wrote, "Cancer Made Me a Cold-Blooded Killer," exploring my most bizarre chemo side effect: losing my life-long bug phobia and becoming a shrewd-eyed bug killer. Overnight. Probably not a chemo side effect, sure, but that's the only thing I could attribute it to, given my sudden transformation from holding my skirt up while I shrieked from atop a chair to pummeling a wasp to death with a light-weight fly swatter.  Read more »

You may know that once you have had cancer, even when you are declared cancer-free, it is not over. There is often ongoing treatment to help prevent you from getting cancer again, as well as regular follow-ups with an oncologist to screen for recurrence. Just when you want most to stop thinking about cancer, it seems you have to go see someone and talk about it some more.  Read more »

When I was ten years old, my mother went through chemotherapy for breast cancer. I don't have a lot of clear memories of this time; they all come in flashes. Mostly, they are flashes of her feeling very sick, or doing arm exercises for lymphaedema, or wearing her wig and trying to stay upright, taking care of everything that needed to be taken care of.

One more coherent memory that I have, though, is later, when her hair grew back. As with most people, her hair came back gray and white. She hated it and bought hair color to fix it. But, she couldn't lift her left arm over her head to apply it, so she asked me if I would please help her color her hair.  Read more »

I don't!

My surgeon walked into the exam room today, speaking as she entered. "It was just as I thought - negative!" I smiled at her, so relieved. SO relieved.

She said that she hadn't thought it was anything to worry about in the first place. I asked, "If this kind of thing comes up again, do we wait longer before doing surgery?" I thought maybe next time we could track things for a few months before doing a biopsy.  Read more »

While I've talked about how this potential recurrence scare has made me lose all semblance of graciousness, truth is, when I am around real people, I revert back to Nice Girl mode. Good thing, too, because when you choose to get treatment at a teaching hospital, patience and grace are necessary to your survival. It is never in your best interests to make the people with sharp instruments cranky or nervous.

I arrived in radiology before 10 am, as perky as someone can be who hasn't had any water to drink for 10 hours. My royal blue hair was contrasting wonderfully with my red and black cotton track suit. You know, when I'm heading into surgery, I don't really care how I look. I just want to be cozy as long as possible.

We waited for an hour past my appointment time. I could see the woman at the front desk getting edgy as the minutes ticked by, because she knew I had to go to surgery. She kept calling in back to remind them, and finally she just made them take me. I bet she didn't want to be the one to call over to the hospital wing and say they just hadn't gotten around to inserting the guide wire into my breast.  Read more »

Today, I went to UCSF for my pre-op appointment for my surgical biopsy on Thursday. Now they call them "prepare" appointments. Whatever.

Last year's pre-op was a bigger deal, because they had me meet with the surgeon's nurse to understand surgery and recovery, as well as get tests done at the hospital. This time, they just sent a packet of information on the surgery in the mail and made an appointment for me to get the tests done.  Read more »

Someone from UCSF called today to give me the appointment times for my surgery and pre-op appointment (though she called the pre-op appointment the "preparing" appointment - who trains these people?).

She told me that I need to report to room such-and-such at 10 am for the needle localization. I had that done on both breasts last year - that's where the radiologist put a guide wire into each breast to guide the surgeon to the surgical location. Thing is, they use the core needle biopsy equipment for this...you know, the same equipment that the radiologist said couldn't detect my microcalcifications.  Read more »

Kathy and I made new journals today for our classes with Kelly Kilmer. Class starts tonight, so we've been heads-down on our project.

I think Kathy's journal just ROCKS. She used my homemade templates for the binding holes and then made up her own beading design. It's awesome, and I love the images on the cover. You probably can't tell, but she has a sheen of iridescent gold glazed over the whole book. Check it out:

   Read more »

Today's title is actually an instruction flashed to Lincoln Six Echo in the movie The Island. Hey, I need to report to the tranquility center, too! Where is it?

I decided that my tranquility center is located in my art studio. I haven't been spending enough time there of late. What with all recent stressors (sick kitty cat, waiting for a surgical biopsy, broken computer in repair, and more) I find myself needing to create.

I just love color, so I started out by making this very colorful art journal to use for my color studies:  Read more »

I pulled out the card that the surgeon's nurse gave me and rang her up this morning to find out what's up with the confirmation call I received for a Wednesday appointment. Now, she gave me her number when I had the almost-biopsy last Wednesday. She said to call if I had any questions.

What she neglected to say was that she was about to go on vacation...for a full month! Her voicemail let me know not to leave a message.  Read more »

Ever wake up early in the morning - after far too little sleep - and feel like you are going to throw up? Without a hangover, that is. Well, it could just be me, but that's how I felt at 5 am today when I had to get up to get ready for my core needle biopsy. It was o'dark o'clock, as my friend Christine says, and thanks to the daylight savings time, I wouldn't see the sun for two more hours. Yeah, yeah, you're thinkin' I'm a sissy and maybe you're right. But I hadn't slept well and my body was rebelling. Thankfully, coffee helped.  Read more »

Ah, finally, a day of success.

My new drive enclosure was delivered to me from Newegg this afternoon. It works like a dream. Very easy hardware install and no problems at all. I managed to backup my system drive and hookup my data drive. I still can't do everything I did on the desktop system because I either can't install the applications on the laptop or installation is complicated (like with development tools) and I haven't gotten around to it yet. But I have all my writing and know that I have not lost anything.  Read more »

UCSF is trying to drive me crazy. They are succeeding.

I have been waiting since Wednesday afternoon to find out when they want me to come in for the stereotactic core needle biopsy. After all, the surgeon said she wanted it done this week. I figured they'd call me by the end of last week, at least, but ... no call!  Read more »

This morning, on her drive to work, Kathy called me to wish me luck today at the surgeon's appointment. Thing is, we weren't sure what would constitute good luck.

My appointment was at 11 am, which meant that I was taken to the exam room at 11:45. I had a good chat with the person who takes my vitals - I remember her well from chemo - so that was nice. The surgeon popped her head in after I had waited about 10 minutes. She said she was going to examine my films and then she'd be back.  Read more »

We all hear that cancer is big business, involving expensive treatment, but how expensive is it exactly?

I was recently reviewing my medical expenses for last year and was shocked at the numbers. I decided to share them to give my readers an idea of what cancer treatment can really cost. Keep in mind that this is nine months of treatment for early-stage breast cancer in a 40-year old woman with a strong family history. All treatment was provided at cancer centers in the San Francisco Bay Area.

Total cost of care billed:  $224,725
Total paid by insurance: $134,110
Total paid by patient: $5,706  Read more »

Yesterday I read the mammogram report that I had shoved into my tote bag after this week's visit with the oncologist. (It got mixed up with the printouts of PHP code for a website; I'm such a geek!) The radiologist reported  "Surgical biopsy recommended."  Read more »

I had to hit the ground running this morning. Tomorrow is my niece's birthday and, as usual, I hadn't made her card ahead of time. That would be, I dunno, just not panicked enough for my style! So, I needed to make her card at 7 am and then fly out the door to drive to San Francisco for my appointments at the Breast Care Center. Here's the card that I made:

 Read more »

Yesterday I had my hair cut and bleached. The cutting part is funny, because it is soooo short, but what we're doing is trying to get the top to grow enough so that I can start growing the whole thing. I'd rather not grow the sides at the same rate and start to look like a dandelion - crazy me, I know!

My hair has starting curling, which is new for me. I've always had stick-straight hair that required harsh chemicals if it was going to hold a curl. Thank goodness I stopped doing perms over a decade ago. But now it's starting to act out and curl in funky directions of its own accord. I knew that might happen as hair often comes back curly after chemotherapy, but nonetheless, it's WEIRD.  Read more »

I remember one day, as a teenager, when my family was getting ready for a wedding. I felt very ugly out and out place. My grandmother who was visiting from Chicago had just congratulated me on putting on weight. She thought was a compliment; I was crushed. On top of that, my face was shiny and I hated that. Why did I have to be the one with oily skin?

My aunt walked with me outside to talk to me. She said, "Let me tell you a secret. I had oily skin all my life and your mother never did. But then you get older and see? Look who doesn't have wrinkles!" She laughed wickedly. "Don't hate your skin; you're going to be thankful for it later on."  Read more »

As I expected, my doctor decided today that I must have a bacterial antagonist living inside me because I shouldn't be running fevers this long after having the flu. She prescribed an antibiotic; we'll see how that goes. In other news...

As seen on the drive home...

I drove behind a postal police car all the way across the Bay Bridge. I've never seen a postal police car! It had a rack of lights on top and looked very official, in that "armed officers will hunt you down and make your life scary" kind of way.  Read more »

I just came from an appointment with my surgeon. This is the follow-up appointment that was mistakenly scheduled for August, but then couldn't be done then because I was in the middle of chemotherapy. I had to wait until after radiation and the re-check with the oncologist, blah, blah, blah.  Read more »

Happy New Year, everyone!

In hopes of having a better chance at a good year, I have made the radical decision to discontinue Tamoxifen treatment. The past several weeks have been a descent into hell thanks to my body's personal response to the drug. What good is it to lower my risk of breast cancer recurrence if I cannot enjoy my life? The anxiety was edging me toward suicidal thoughts and that is where I draw the line.  Read more »

I am really trying to be patient with Tamoxifen, but the side effects keep stacking up like cordwood and I feel wrung out. I know there are women who have few side effects or who can mange their side effects well. What I don't understand is why I am not one of them!  Read more »

I emailed my oncologist about how Tamoxifen has made a new edgy me. I asked her if there was something I could give Kathy to use on me when I start lashing out, maybe something in aerosol form that she can spray at me. I told her that if I could slip it into Kathy's Christmas stocking, it might be her favorite gift of the season!

The doctor wrote back and said that she really didn't think pepper spray or MACE would help with the situation. If I wanted, she'd be happy to make an appointment so I could bring Kathy in and she could explain to her that it's not my fault.  Read more »

For the past few weeks, I just keep getting crankier and crankier. Cranky isn't the right word. Scary-bitchy might be more descriptive! Anyone reading this who knows me also knows I do not have a bitchy bone in my body. But suddenly, thanks to Tamoxifen, I've turned into Dr. Jekyll and Mr. Hyde. YIKES!  Read more »

Today was my one-month check-up after completing radiation. I was looking forward to going back for the appointment because I had hoped to see the radiation therapy leads again. Actually, I don't know if they are called ‘leads' -- that's just what I call them because they appear to lead each team that they are on. Hmmm, maybe they are just pushy. Well, I like them, whatever they are called, but they were both out today. Bummer.  Read more »

Angela Kinsey, who plays Angela Martin on the US version of The Office, was on Conan O'Brien just last night. Because I like this actress and read Angela's blog, I made sure to watch it. As it turned out, she was hysterically funny. Angela is from North Texas and she had some great stories to share about her first time in New York City (as an intern on the Conan O'Brien show, ironically enough) and her early jobs.  Read more »

Today was my check-up with my medical oncologist to see how I am doing on Tamoxifen. Mostly, my side effects have been that weird mid-thigh pain and the low back pain. I think that's all, though it is always hard to tell what is causing what. I've been edgy lately, but maybe that's just the holidays.

Both the nurse practitioner and the oncologist asked me about hot flashes or night sweats, which are often a problem for women who take this drug. I told them nope, none of those. They seemed surprised, but the doctor did say that they have seen a few women who don't get them.  Read more »

Kathy had an appointment with our hairstylist yesterday and so I went along with her. My hair is way too short (I'd say less than 3/4 inches long) to do anything with, but I enjoy our stylist, so I thought it would be fun to tag along for a visit.

While Jennifer was working on Kathy's hair, I was complaining about how much I hate my own hair. It is dark gray, like pencil lead, all over. That's not my hair! I feel old in this color, as it doesn't flatter my skin tone at all. After listening to my whining, Jennifer looked at me with bright eyes and said, "Let's bleach it!"  Read more »

 

Is this an awesome T-Shirt or what?

Wish I had made it myself, but...it's okay that Lisa Spodak beat me to it. It's part of her Save the Boobs! Fight Breast Cancer! shop at CafePress.com.

http://www.cafepress.com/lisaspoavonwalk
 Read more »

Today I started taking Tamoxifen (anti-estrogen therapy to lower chances of breast cancer recurrence). My oncologist prescribed 10 mg tablets that I take twice a day; the pharmacist said that the literature doesn't say to take with food, but take it with food anyway. I know some women get nauseated. My trick will be learning how to take something twice a day without fail. There are few things beyond brushing my teeth that I do every day on schedule!

I've decided to have a neutral-to-positive attitude about the Tamoxifen. It may be just fine. Lots of women tolerate it well; I'll just keep reminding myself of that. Last thing I want to do is start demonizing my medicine; that can't be good.

When you're newly diagnosed with cancer, there is so much going on in your head that it is easy not to know what to do and to go with what others recommend. Yet here are some tips on what you might want to do right away in terms of finding your best care. I wish I knew this when I was diagnosed.

The first thing to do is call your medical insurance company, assuming you are insured. Ask them what your options are for finding a center for treatment. You may have to talk to several people to make sure you are getting the right answers, but this is important enough to put in the effort. Your first priority is to find out where you can go and where you can't.  Read more »

Four days have passed since I finished radiation and I have new blisters forming, right in the burned area where I had boosts. My skin continues to peel painfully in the other burned areas. Ow. The thrice-daily skin care regimen continues.

Despite the hard time I have had with burning from radiation, my reaction is not the norm. Only a small percentage of radiation patients (near as I can tell) burn and peel this much. A lot of people never burn at all, or they burn only after radiation finishes and it resolves within a few weeks. I just have a special kind of luck.  Read more »

This morning, was trying to choose a wig to wear for my last radiation session when I looked in the mirror and decided to go without. I have fine, fuzzy gray hair; nothing that looks purposeful, but it's something. Unfortunately, it has come in all gray...but, you know, it's my hair and so I will wear it with pride.

It was a little tricky to get the heavy gift baskets to the radiation center. As it turned out, the staff was in a meeting, so all I could do was leave the "front desk" basket with the person watching the phones. I took the bigger basket in back to the radiation area along with the card.  Read more »

On the way home today, I stopped off at Trader Joe's to get food for the gift baskets I am making. Since tomorrow is my last day of radiation, I want to give something to the staff. I decided to make baskets of chocolate and fruit ... fruit being for the losers who don't eat chocolate.  Read more »

As I've mentioned before, one thing I love about Alta Bates is the free valet parking at the cancer center. It has saved me so much time and money that I can't describe it. But I also like seeing the guys who work there each day. I step out of my car in a different "do" every time and we smile hello...it's a fun ritual. Of course, I have no idea what they think about crazy-haired cancer girl, but as long as they are smiling, I'm happy!  Read more »

This was the perfect day for my electric blue hair. I love the color of that wig. The wig itself is not high quality. If you compare the fibers to those on, say, my "Aqua Purple wig ," there is no contest; Aqua Purple has more fluidity, silkiness, and strength. With the electric blue wig, you don't want to comb it too much (read: at all) if you can help it.  Read more »

The radiation therapists keep sending me to the nurse after looking at my skin and frowning. It just keeps burning more and peeling off. I did not know that peeling skin could be so painful.

The interesting thing is that there are two women who are finishing radiation within a day of me and they do not have any burning or blistering. I don't think most people burn this much or this fast. (I'm sure some have it worse, so I am NOT COMPLAINING.)  Read more »

On Monday, the radiation oncologist's nurse told me to start using Domeboro solution on my raw skin, three times a day. She gave me some samples to start me off, and that day I went to the pharmacy to try to get a box of packets. They said they'd have to order it and told me they'd call me later in the afternoon with an estimated arrival.

Tuesday, after hearing nothing, I called the pharmacy, but they transferred me and put me on hold for fifteen minutes. Finally, I hung up.  Read more »

I met with my radiation oncologist's nurse again today, so she could check out my peeling and oozing skin. (Sorry, I know that's gross!) She brought along two nurses to discuss what we should do.

The challenge is that I need to get air to all the moist burns as much as possible. That's fine for under my arm, but it's not easy to do under my breast. Any large breasted women reading this know what I mean. If you would have failed the pencil test at age 19 - or even the pencil box test - then you know what I mean.  Read more »

A friend of mine in Arizona called me up today. She asked if my hair was growing back. I said yes.

"What does it look like?" she wanted to know.

"Well, did you ever watch Dark Angel?" I asked.

"Sure!"

"Okay, I look like young Max, only...gone bad on the pastries."

It was a good laugh!

My skin has now started to peel off in the most painful way. People say, "it's like a sunburn, right?" I don't know, I never had a sunburn hurt this much when it peeled! My flesh is raw underneath, oozing, and I feel like a mutant.  Read more »