Cancer Is My Piano

I think of the Universe as a living breathing thing that knows what you ought to be doing and will try to clue you in if you get off track. Here is how it works.

When the Universe wants your attention, it sends you signals. It throws tiny little downy feathers and bits of soft moss at you. If you are paying attention, you’ll see them, you’ll feel them! You’ll get the message! Most of us need something more solid. Luckily, the Universe doesn’t give up. It starts throwing little sticks and pebbles. If this doesn’t work, it moves up to branches and rocks. Hard as it is to believe, many of us are weirdly able continue hiking along our life path without even noticing the boulders and tree stumps flying at us from every direction. We duck when we have to but only the truly astute say to themselves, “Gee, there must be a better path out there somewhere, I’m going to try and find it.” For the rest of us, the Universe eventually works itself up to smacking us down with a grand piano.

Getting fired and cancer on the same day was my grand piano. I’ve spent the last 7 weeks totally smacked-down. I think I’m ready to sit up now. I’m not sure where I’m going from here or what I’ll need to sustain me on the journey. I know I’m not going to head off in the same direction I was traveling. I can’t anyway…that stupid piano is in the way!

I don’t know what I’m going to do now for a home or a career. I feel determined not to settle for anything less than what I really really want in my life. I don’t want to play it safe or worry about whether I might fail and disappoint people. For the first time in my life I feel like I know the answer to, “What’s the worst that can happen?” The worst would be if I got cancer again. Since I can’t really control that, I’ve decided to go ahead and try for the life I might have always dreamed of it I’d ever had the courage.


I don’t know what that is yet, but I promise to keep you posted as I figure it out. If you want to help me along the way, please write and tell me about the life you’ve always wanted. I want to know what you dreamed and how you tried to make it come true, or how you didn’t. I want to know how you succeeded and how you failed and what you might have found instead. I need role models for how to reach big dreams! But, I also want to hear from those of you who gave up or failed or didn’t even try. I especially want to hear from other people like me who are only just starting to figure out what their dream-come-true might look like.

I know it can be tricky leaving comments here if you don’t already have the right kind of e-mail or blog account set up. You can also email doublewhammydiary@gmail.com. Just mention this post in the subject heading so I know it’s not spam. I’m sincerely looking forward to hearing from you.

August 30th Relocation

I'm all moved in. Well, kind of. The things I need are here in this beautiful little studio. I'm here too. But, all my things are still in the crates, and I am worn out. I'll start unpacking tomorrow.

I am able to get on-line using the unsecured wireless from one of my new neighbors. I've opened the french doors wide out onto the brick patio that overlooks the garden. I can see the rolling hills that stand between this artsy college town and the ocean. I can hear a mourning dove in the tree right outside my window. This is going to be a wonderful place sit and write in my journal every morning.

I am still really sore on my right side, slightly swollen and unable to really use my arm like normal. But, I'm getting better every day. The worst part right now is that the skin around the incision has become super-sensitive so that even the sensation of my loose Tshirt moving across that area is totally annoying! Also, I still get physically tired a lot faster than I used to. That might just be because I'm out of shape from my 7 weeks of sofa-centric lifestyle.

I hardly had to do any work at all today. Two really nice friend of mine did all the lifting and carrying. Actually, one of them was just a friend of a friend...but I hope she'll be my friend too from now on. I plan on being hers.

When they had brought all my bags and boxes up the hill from the road, my very sweet and talented new neighbor, H., invited us to sit with her at the table and chairs right outside her kitchen door. She served us (I am not making this up) home-made scones fresh from her oven, red raspberries and Devonshire cream, with a glass of iced tea on the side. I felt like I had died and gone to South West England. This is the same young lady who has promised to play the baby grand for me. I might never want to leave!

Another generous friend, J. (Gosh, I feel so wealthy with all these good friends!) has loaned me her Honda CRV for the week, so I'll be able to easily shop for the things I need to make this little one room apartment into a livable space. First, I need a mini-fridge and a microwave.

It's getting dark now and I'm going to bed feeling very 80% grateful, 19% hopeful and just 1% scared of what happens next.

I plan to spend the rest of this 3 day weekend unpacking and exploring my new home. Tuesday thru Friday my main occupation will be dealing with all the issues around being unemployed. Next weekend I'm going to clean out my old house, pack things up for storage, and make a trip to Goodwill so the house will be ready for my new tennants when they move in on the 13th.

I hope everyone out there is having a wonderful holiday mini-break! Please enjoy every minute of it!

What to say.

People want make me feel better about my new lopsided figure. A surprising number of them look at me and say, "Don't worry, I can't even tell!" This is kind and well meant, I know. But, it doesn't make me feel any better at all! Imagine gaining 30 pounds, or getting a terrible haircut, or accidentally wearing your creepy halloween costume to work a week early. Hearing, "I can't even tell," makes you wonder if you've just always looked bad.

Yesterday I went on a walk with my big-tough-muscley-rugby-guy friend, E. He is exactly not Mr. Sensitive. He's always really nice to me, but he just says what's on his mind and doesn't bother to worry about how his comments are going to sound to other people.

Also, he is a pinnacle of heterosexual masculinity. He is about as far on the other side of the gender spectum from me as a person could get. I firgured he'd have a real attatchement to the idea of breasts on a woman, and see them as a indispensable facet of female desirablility. I expected him to wonder why I wasn't getting re-construction.

Instead, while I was lamenting my loss, he said, "Dude, whatever! Scars are hot."

This is the very best comment I've had yet! I didn't loose a breast, I gained a sexy new scar!

Of course, then he had to go ruin it with, "Dude. It's not like you had that much in the first place."

August 28th Medical Update

Just to make sure everyone knows: I am totally CANCER FREE.

That is the most important thing! Yay!

It’s been 2 and a half weeks since my mastectomy. I had all of my right breast removed, and four lymph nodes on that side.

I asked Dr. Rocco yesterday about my right armpit smelling bad and she said some of her patients do say that happens. She told me to call the physical therapist to ask what underarm product she recommends. Also she reminded me that it takes 90 days to completely heal from this surgery.

My hormone receptor tests came back half-positive. There are two different hormones that they test for and my cancer was positive for one of them. That means that the kind of tumor I had was encouraged to grow by this hormone that by body naturally produces. (I’m sorry, I forget which hormone it is right now.)

I guess the likelihood that I will develop more of this kind of malignant tumor in the future is pretty good…so they want to give me medicine. The medicine is called Tamoxifin, and it interferes with the way my body produces or absorbs hormones. I’m not sure. I'm also not sure I spelled Tamoxofin right. That doesn't look right either.

It has a lot of side effects, and seems to me equivalent to taking poison every day for the rest of my life. At the moment, I know almost nothing about it. I’m going to do some research and talk to an oncologist before I decide what to do.

I talked to my N.P. (the lovely Patty O.) about my recent blood work. I do not and never had Valley Fever. The nodules they saw in my lungs on the chest Xray seem to be scars from previous illnesses. I remember having bronchitis pretty bad a few times as a kid so I guess that makes sense.

My body seems to be healing up pretty well. I’m back to only needing 8-9 hours sleep like a normal person. I’m taking long walks or gentle bike rides every evening. I am able to lift things with both hands if they are not too heavy. I am being easy on myself and not doing too much. I’m drinking lots of fluids and eating well.

My chest only hurts a little bit most of the time. Sometimes I will have sudden deep painful breath-taking sensations that last for up to 3 minutes. I think this must be the nerves healing. I still cannot bear to have any pressure applied to the skin where my breast used to be. I have explored it very delicately with my fingertips and seem to have several patches of skin that are completely numb. The literature suggests these may heal and regain feeling again someday…or not.

I called the place about getting fitted for a prosthesis yesterday. Apparently, for the first 6 weeks they give you fluffy little generic thing you can stuff in your bra until you are healed up enough to get custom fitted for your permanent falsie. I’m not going to bother with the temporary one. I can’t stand to wear a bra for more than an hour or two at a time right now anyway…and I really don’t think I look that bad. If I have a job interview or something, I’ll stick a sock in it.

Dr. R wrote me a prescription for the prosthesis so I can get my insurance payment to cover part of the cost. On the paper, there is a blank space next to the words “duration of use.” In the blank space, she wrote “lifetime.” That just felt weird when I read it. Am I really going to be using this same fake boob when I am 75!?

That’s all I can think of as far as technical updates. Feel free to ask if you have questions.

It Might Be a Big Deal

I’m a big believer in the benefits of a good long cry. When stressful and upsetting things happen in my life, I always try to give myself the space to sob about it. Maybe it’s only for 5 or 10 minutes, but I think it makes a big difference. I think it enables me to bear whatever the situation is with a better handle on reality. It takes a lot of energy to hold those feelings down deep. If let it out, I can use that energy to do other things. That’s how I see it.

However, I haven’t really been crying all that much since my mastectomy. It just didn’t seem like a big deal. I wasn’t going to die. At no time during my month of diagnostics did it look like I might be going to die. The cancer is all gone. My chest hurts…but it will get better soon. I might not have a breast, but I’m tall and leggy with smooth skin and bright blue eyes. It seems silly to worry too much about my lack of cleavage when I’ve got so much else going for me in the “looks” department. I mean, really…it’s not such a big deal. I’m fine!

My wonderfully sweet and feisty friend D. called me last night and offered to just listen to me if I wanted to cry or rage or whatever about the whole thing. I told her it didn’t really feel like that big a deal. She’s really smart. I’m really smart. We both know it’s been a big deal! I know it in my head, I just can’t seem to feel it.

So between the two of us, we decided that for 12 minutes I would pretend that maybe it was a big deal. I sat in front of the full length mirror in my guest room and took off my pajama top. I looked at the new reality of my body. I looked at the tape and dried blood still stuck to my incision site. I asked myself how I would feel if this had been a traumatic, terrifying, life-changing event that would affect me forever. I asked myself how I would feel if the loss of my breast made some kind of difference in how I felt about my body. I asked myself how I would feel if I had to choose between taking semi-toxic medicine every day for the rest of my life or worrying that my cancer might come back any moment.

My head opened up like a floodgate. I just howled and water streamed down my face from my eyes and nose. This might not sound like a wonderful thing, but it really was. I wasn’t sobbing and heaving and struggling to get control of myself. I just felt wonderfully OPEN. I felt like the top of my head had been screwed off and all this yucky stuff that had been swirling around inside me was just evaporating out of my body. After my twelve minutes were up…I felt SO much better.

D. and I wrapped up our conversation. I put my pajama top back on and got in bed. For the first night in 3 days (since my last caring house-guest left) I didn't lie awake for hours in the dark. I went right to sleep.

If you don’t agree with me about the value of a good cry, or letting your feelings out in general, I’m not going to argue with you. We all find what works in life. However, maybe you are like me. Maybe you believe that getting them OUT makes sense. Maybe you’ll have something similar going on in your life someday, or maybe you do right now. Maybe in your head you know it’s a big fat ugly thing that’s happening, but you are so determined to get through it with out being traumatized, that you are not able to feel how scary or awful it is. If so, you are the reason I took the time to write this blog entry today.

Let me gently and lovingly encourage you to take just a minute (or 12) and just pretend that what you are going through is a big deal. Set a timer, and when it dings, you can stop pretending and remember the truth. You are a big, strong, capable, grown-up person who, with the help of loving friends and family, can handle this challenging time with grace and strength and creativity. And, so am I.

The Downside I Didn't Expect

I smelled pretty bad the first week after surgery. I couldn’t take a bath or a shower because half my chest was wrapped in bandaging that couldn’t get wet. I tried to wash my armpits with a damp washcloth, but it didn’t go very well. My right arm was so sore and weak that I couldn’t reach my left armpit at the right angle or scrub with appropriate vigor. On the other hand (literally,) my left arm worked okay, but my right armpit was so tender that I could hardly bear the lightest pressure with the washcloth. Also, I didn’t get the cloth very wet because I didn’t want it to drip down onto my bandage.

To compound the problem, I think pain must make your sweat smell worse than usual. Like fear, it must trigger a different chemical balance in your body. I’ve heard hunters say that the best venison is from deer that were surprised by the shot. If they are munching peacefully in a meadow when they die, they taste better than deer who were startled and tried to escape. I believe it. I did not smell like I was peacefully munching in a meadow.

As I started healing, I was able to wash more insistently. Also, when I stopped taking the drugs, I started remembering to use deodorant more often. I still smelled bad, but I figured it wasn’t anything a hot shower wouldn’t fix. I had to wait 7 days for that pleasure.

The first day I was able to stand under running hot water was like heaven. I have never been so grateful for modern conveniences. It pulled out the aches and tensions from a week of lying on the sofa in awkward suture-sensitive positions. It erased seven days worth of flaky scalp and made me feel like there was hope that I would actually feel good in my body again someday. But, it didn’t solve the odor problem. Just a few hours later I was wafting like a piece of overripe fruit.

I tried not to worry about it. After all, I didn’t have to go to work and I wasn’t spending time with anyone who didn’t already love me. Also, I secretly love the way my armpits smell when they are a little sweaty. I think this is because of the way I was raised. When I was a tiny baby, my family lived far from civilization in a hippie outpost of self-built houses and minimal technology. There was no electricity, telephone or plumbing. It was a humid climate. I imagine my mom’s armpits were healthily damp most of the time she was holding me in her arms. I look kind of like my mom. I bet I smell kind of like her too. So, I reason, the smell of my own armpits probably triggers some deep subconscious memory of being held and safe and fed and happy and loved. But, as I don’t expect anyone else to have this pleasant response to my particular scent, I am anxious for it to go away.

I am now in the third week of healing from my mastectomy. I am able to wash like a normal person. I use the same underarm deodorant I’ve been using for years. I took a long hot shower last night and indulged myself with scrubby gloves and a delicious tangerine body-wash that arrived in one of the many care packages I’ve received lately. I didn’t do anything afterwards but eat supper and go to bed. I haven’t done anything this morning but sip tea and type. And yet, my armpits are overpowering. I smell like I’m wearing a used jogging bra from last week. I smell like a construction worker in Alabama in August. I smell like I will never land another professional job, or get asked out on another date, for the rest of my life.

It suddenly dawned on me that maybe this odor extravaganza has something to do with the four lymph nodes removed during my operation. I did a sniff test on my left. Nothing. I breathed deeper and got a hint of a light, clean, slightly soapy scent. I smell like a girl. I smell like a nice girl you would bring home to meet your grandmother. I turned to the right. I smell like a goat. Actually, I’ve never smelled a goat. Maybe I am being unfair to goats. Maybe they smell better than this.

In none of the literature I’ve read, or in any of my conversations with other survivors, was I told to expect this. Maybe my body will adjust. Maybe my remaining lymph nodes will learn to compensate. Maybe lymph nodes have nothing to do with how a body smells and I am just imagining this. I’ll let you know if I figure out a solution. In the meantime, please only sniff me on my left side. If you’re dyslexic, don’t worry, it’s easy to tell which side is my left without even thinking about it. It’s the side with a boob on it.

How I Found My Lump

I did not perform regular breast self exams. Once in a great while I'd paddle at my breasts with my fingertips, looking for cancerous lumps. Of course, I didn't want to ever find any and the best way not to find something is not to look for it, so I didn't paddle very often.

In the earlier part of the year, I had a tiny patch of rough skin on my nipple. I only noticed it if I was topless and raised my arm in front of me, close enough for the sensitive skin of my inner arm to graze the surface of my breast. It felt rough on my arm instead of soft and smooth. I put some extra lotion on it for a few days and it went away. After a week or so, it came back. I used lotion on it again, and forgot about it. I now know that this was probably my fist sign of breast cancer. At the time I had no idea.

In May, I started to feel a twinge inside my breast. It was hard to explain to people. It wasn't painful and it wasn't there all the time. Most often I said, "It feels like the sound of someone dragging their fingernails across a blackboard. The sound doesn't physically hurt your ears, but my goodness it's unpleasant." For a week I tried to ignore it.

On Sunday the 25th, while taking an evening shower, I decided to look for a lump. I found one. It felt about the size of a super-bouncy ball, but squishy. It was in the very center of my breast, right behind my nipple. I think this is why I had that twingey sensation. It must have been hitting a nerve or something. Thank goodness, because otherwise I don't know when I would have found it. I might have found it too late.

Standing in that shower with the lump between my thumb and forefingers, I started to cry. I cried because I thought I might have cancer and I was scared. But, I wasn't afraid of cancer. I wasn't afraid of surgery and chemo and maybe even dying. I was scared of being alone. I had moved across the country less than two years ago. Since then, the love of my life (so far) had "fallen into the arms of someone calm" and moved out. I now lived by myself in a small two bedroom house three thousand miles from my family. I had lots of friends, but I hadn't known any of them for very long. I knew that if I had cancer I wouldn't be able to handle it all alone. It suddenly dawned on me that I couldn't even handle having a suspicious lump all alone.

Luckily, I was not at home by myself. I was in Maryland at a three day peace-monger (I just made up that word) workshop. The participants at this workshop were all emotionally courageous people who are devoted to facing their fears and also to being present and connected with other people. Even though it was late, I was able to find a friend there who was willing to stay up with me. She sat next to me and held my hand and just let me cry and talk about how scared I felt. After about twenty minutes I felt a lot better. I remembered that my next door neighbors are kind and generous people who would probably come over to check on me and bring me casseroles if I needed them. This made me feel like I could face cancer if I had to and I went to bed.

The next day, the workshop ended and I caught a ride to the part of Maryland where I grew up. I was going to stay with my mom for the next week. I wanted to tell her about the lump, but I knew the first thing she would say would be..."you'd better call your doctor and make an appointment!" So, I waited until I could sneak away with my phone, called my OB/GYN for the appointment and then told her about it. I recommend this technique. We were both able to relax and enjoy our week together, knowing I'd done everything I could do about it for the moment.

Some one recently told me that women wait an average of 6 months after finding a lump before they make an appointment to have it checked out. I've gotten a lot of praise for being so prompt, but I didn't really have any choice. That twingey feeling was driving me nuts.

The Choice I Made and the One I Didn’t.

Before my mom left she tried to apologize to me for anything insensitive she might have said or done while she was here helping me through my cancer adventure.

I didn’t know how to respond to this. I feel all teary just trying to write about it. She was every kind of thoughtful and considerate and caring during this surreal time. She was the reason I wasn’t completely terrified the whole month long. She was also the reason I was able to let myself feel completely terrified once in a while. I find it a lot easier to face my fears about the future when I know I’m safe in the moment. Even though I’m a real grown up now (35!), I still find it hard to feel anything but safe when my mom has her arm around me.

So, I was shocked when she said she thought she might have said something inappropriate. How could she not know how wonderful she’d been to me? But then I thought about it and realized she had a point. There is no way to know what is the right or wrong thing to say to someone who is going through something so emotionally turbulent…especially if you’ve never gone through it yourself. And, of course, the stupid hurtful thing that gets said out loud is going to come from someone you adore and trust who only means to be helpful. (We may all have assholes in our lives who say insulting and infuriating things on purpose, but why would we care what they have to say?)

So, my mom was right to worry. It turns out the one and only cancer-related comment that really pissed me off did come from a very well-meaning and supportive person whom I adore and deeply appreciate. When I told her I was going to have a mastectomy she said, with genuine sympathy, “Is that what you’ve chosen to do?”

Here is what I wanted to scream at her: “NO! This isn’t what I’ve chosen! This SUCKS! If I had any kind of real choice at all, why would I CHOOSE this!? Who in their right mind would choose this if they felt like they had any other real option!? I’m going to get knocked out and have one of the organs of my body sliced off with a knife! It’s going to hurt like hell for I don’t know how long, and I will never look the same again! Don’t be an idiot! Shut the fuck up! Let me out of here, you thoughtless creep! God, I HATE people!”

Here is what I said out loud: “Um, well…my surgeon says that since I have two malignant tumors that are pretty far apart from each other, there isn’t any other option.”

While I didn’t have any choice about whether or not to have the mastectomy, I did have a choice about getting reconstructive surgery, though this was not made obvious to me at first.

Early on, before we even knew about the second tumor, my excellent surgeon explained the available treatments. If possible, she would remove the lump without really changing the shape or size of my breast. However, if the lump was too close to my nipple, she might have to remove that too. Furthermore, if the lump was spreading through more than one “quadrant” of my breast, a mastectomy would necessary. She then explained that for either of the first two options, I could have the procedure done here in Santa Maria and she would be my surgeon. But, for the third option, I’d have to go down to LA so that the plastic surgeon could be there too and do the reconstruction immediately following the mastectomy.

She then went on to explain that the cosmetic surgeon she would recommend sometimes worked a day or two in Santa Barbara and I might be able to avoid Los Angeles all together, but I wasn’t really listening. I was stunned that she had just assumed I would have reconstruction.

I interrupted her to ask, “If I didn’t get any reconstruction, could I have the operation here and would you be my surgeon?” She answered, “yes,” and I said, “because that’s what I’d do.”

She raised her head from the paperwork and looked right at me. I think now she was the one who was stunned. For one very long second we just looked at each other. Then she kind of shrugged and nodded and smiled at me. The office manager made some sweet and funny comments about how it doesn’t matter how many breasts I have, since I’m so beautiful and we continued to talk about my treatment plan. My surgeon commented that I could always have the reconstruction done later if I changed my mind.

No one at that office, or at the hospital, ever seemed to judge me for not having the “cover-up” procedure. No one acted like I was unusual or questioned the wisdom of my decision. Still, that long moment of silence and the fact that my extremely thorough and communicative surgeon completely overlooked discussing this option with me, really makes me wonder about other women’s decisions.

What percentage of women in my age group opt for reconstructive surgery after a mastectomy? What about the other age groups? If they choose the reconstruction, how much information do they have before hand? Are they made to feel like they have a choice? What are the factors they consider while deciding? Do they feel like they need to have the surgeries done on the same day or do they know they can have the reconstruction done later?

Here’s why I decided not to have the boob-job.

First, it’s not just a boob-job. I used to think reconstructive surgery meant they would just scoop out the inside of my breast and fill it back up with silicone. That’s not what happens. A mastectomy is removal of the entire breast, including skin, areola and nipple. There isn’t any thing left to fill-up. The doctors have to start from scratch. There are two different ways to do this. One way is to take skin and fatty tissue from other parts of your body to create a breast. Then, they remove some darker, more nubby-textured skin from a different part of your body to shape into a nipple. Then, they use a tattoo gun to create an areola-type area. This takes several surgeries, lots of healing, and, at best, results in some small scars and a breast that looks fairly similar to the other one. (There is a small possibility of large, infected scars and a lopsided, unappealing bosom.) The other way is to stretch out the skin that remains after the mastectomy is completed. They put in a “spacer” under the skin and slowly enlarge it until there is enough skin to make a breast. Then, into this pocket of flesh, they insert a silicone cushion. This technique doesn’t involve surgery on any other part of your body, except to get the nipple. There is still tattooing involved. It is less extensive, but it is still surgery.

No matter what reconstruction technique one chooses, it is stressful, painful, time-consuming and expensive. I just couldn’t see going through all this just for looks. I have never been the kind of person who would consider getting a “lift” or a “tuck.” I don’t have the kind of career, relationships or self-image that make my physical appearance seem important enough for such drastic extravagance. “So,” I thought to myself, “If I wouldn’t have ever considered a beautification-operation before cancer, why on earth would I consider it now?”

(I hope I don’t seem judgmental here. I have two friends who have had breast augmentation and several more who’ve had reductions. They are all delighted with their results and I am delighted for them. As an ardent feminist, I will staunchly defend any woman’s right to do whatever she wants with her body, and to define beauty in whatever way seems right for her. In discussing my own decision making-process, I am just talking about ME.)

There are several other side benefits to not having the reconstruction done. For one, I will never have to worry that someone is dating me “just for my looks.” Also, I’ve got instant credibility if I want to do public speaking on topics relating to cancer. And, I now feel free to stuff my bra with impunity. It might be fun to be a double D once in a while!

I hope that I’ll discover more benefits as time progresses. I hope that not having the surgery will allow me some time to deal with the emotional realities of being a cancer survivor. I think that if I’d had my figure “restored,” I might be tempted to just get on with my life and try to forget the last 6 weeks. But, this has been a life-changing experience and I really don’t want to forget it, even though it’s been painful and scary. I want to be reminded every morning how precious my life is, until I don’t need to be reminded anymore.

I also hope that I could be a model for other young breast cancer patients who might feel pressured to get reconstruction. I’d like to be a vibrant, sexy, confident reminder that there is a choice.

Finally, since I’m going around breast-less anyway, I’d like my new lopsided but healthy body to be a reminder to other women of how scary and common this disease is. It could also be a reminder of how curable it is when caught early. Maybe a few more Breast Self Exams will get done and a few more mammograms scheduled on time.

I can think of several other possible “bright sides” to my choice to forgo reconstructive surgery…but I can think of only one real down-side. I will never look “hot” in a low-cut sweater again. I think I can live with that.

August 19th Landmark Day

I don’t know what other people need when they are recovering from surgery, but one thing I need is lots and lots of sleep. In my old, pre-cancer life, I would wake up at about 6 am to pee, and just stay awake. But lately, I have to go back to bed for 2 or 3 more hours. Each time, it seems like I crawl back into bed all blurry-brained and try to curl up on my right side. Of course, this hurts so much that I whimper and wiggle my way back over to my left side. (Just turning over is really difficult when one whole side of your upper body is this weak and sore.) But, yesterday was a landmark day! After curling up on my right side, I thought to myself, “Oh no! I did it again.” But then I realized that it didn’t hurt and I actually stayed in that position and fell asleep! It was so satisfying.

It didn’t hurt at all…but it did feel odd. My body feels so different on that side; empty, stripped. It’s really clear that I’m missing something but because of the way my nerves are healing right now…it’s not obvious what I’m missing. I guess that accounts for my first thought upon waking up later that morning.

Ever since Dr. Rocco told me that my second lump was malignant and that I would need such drastic treatment, my first conscious thought has been the same. I open my eyes and think, “A mastectomy! How awful. I just can’t believe it!” It’s a dismal way to start the morning. But, yesterday was different. I opened my eyes and thought, “I can’t believe I had to have my right arm amputated. How awful. My whole life is going to be so different now. How will I type?” Then, as I considered the dilemma of typing with only my left arm, my brain woke up all the way and I realized… “I didn’t have my arm amputated! I only had a mastectomy! Thank goodness!” I jumped out of bed completely happy and deeply relieved.

Yesterday was also a landmark day because for the first time I was able to put both my hands behind my back and fasten my own bra. I feel really independent now! I guess I’ll be okay when C. leaves at the end of the week and I go back to living alone.

Yes, I will be okay…but I won’t be happy about it! Who is going to sit across from me at the kitchen table, clicking away on her own laptop while I write these journal entries? Who is going to lounge outside with me, sharing beautiful, healthy meals and appreciating our excellent Mediterranean climate. Who is going to engage in serious battles of silly string with me? And even more importantly…who else is tall enough to reach up with a spatula and scrape the silly string off the ceiling the next morning?

August 17 Studio and Shower

This is a photo of the inside of the studio apartment I will be moving into at the end of this month. It is situated behind the house of my good friends, S, L, and S. The window looks out onto their beautiful garden. I'll be right in the middle of San Luis, only about 15 miles inland from Los Osos. There is a grand piano in the middle of the living room, and one of my new neighbors promised to come play it while I'm there. Also, the bathtub is awesome.

My plan is to sublet my little house near the beach for the next six months or so. I'll leave all my furniture there and the utilities in my name so that moving back in will be easy when the time comes. I've talked to several potential tenants, but my favorite contenders are a young couple moving up from Lake Cachuma. They have wild animal nicknames, and didn't think it was odd at all that I am called "Magic."

This next photo illustrated my brilliant solution to a recent dilemma. I was so excited on Saturday to finally be allowed to take a shower. I hadn't washed my hair since the day before surgery, an no amount of scrubbing my armpits with a damp washcloth had helped me to feel actually clean. The problem was, I was so upset and disgusted when I looked at my naked chest that I just couldn't bear the thought of staying undressed for more than five seconds at a time. I thought about waiting until nightfall and taking a shower with the bathroom lights turned off, but that seemed dangerous. Blindfolding myself also seemed dangerous, and emotionally disturbing. The last thing I need right now is to become more emotionally disturbed than I already am. So I took a good long look at the nightshirt I was wearing and decided it could stand a good wetting, too.

At first I felt weird, but once the shirt got soaked with hot water I didn't mind it at all. I was able to thoroughly scrub myself down without any danger of disrupting my pleasant state of denial regarding my physical appearance. I felt like one of those really modest Victorian ladies, who's too shy to be naked even when she's all alone. But whatever--it worked.

This is what a cancer patient looks like.

I wanted to post photos of what my chest looks like now, but then I decided that if I can't even stand to look at it myself...I shouldn't ask other people to look at it!

Instead, I am posting this photo...because a lot of you are far away and not able to see me and you might be worried about me sometimes. I am worried about me sometimes.

My mom took this photo a few nights after my surgery. I look fine, don't I?! You can even see the bandage a little bit in this photo.

Looking at this picture makes me feel better. I don't look like my idea of a cancer patient. I don't look like I've had parts of me removed. I look whole and healthy and like everything is going to be okay.

August 16th First full day with no drainage bulb or padding

My chest hurts. I am still not able to look at my own body...or really touch the place where my breast used to be, but I did look at the pictures that mom took of my chest yesterday. (She was very sweet and didn't argue when I demanded that she photo-document the appointment.)

She had said it looked really good, meaning the skin was pink and healthy and the incision seemed to be healing well. But, I just cried looking at them. I look like I've been mauled. part of it is that my breast is gone...which makes the other one look weird too. Part of it is that my skin is all red and sore where the tape from the bandage used to be. It's also dirty in the way that things get dirty when they have glue on them and all the dirt and fuzz and stuff from regular living sticks to the glue.

I'm sorry if I'm a bad writer. Today I have kind of lost touch with why I'm keeping this blog and who would care about any of this. I want to put up the pictures of how my chest looks now...but I'm afraid they are too gross.

I finally finished the post I was working called "August 8 Surgery day; part two." I thought when I finished and "published" it, that it would go to the front as the most recent thing...but it didn't. It stayed back on the day I had started it. So, if you want to read more about my surgery...and see some not-too-disgusting pictures, you can go down to that page.

August 16th One week Mastectoversary

Whew! What a day.

I finally checked my voice mail. It's been days...maybe all week. Thank you everyone for your sweet sweet sweet, and sometimes hilarious messages!

I only called one person back. I'm just too tired. Sorry, I will next week...promise!

The one person I called back was Kevin from the Yacht Club in Morro Bay. He called to ask if I could crew on a two day sailing race! Oh! I am so bummed! I wish I could, but right now I can hardly drive a car. I had to call him right back, so he won't think I'm not interested for next time. For everyone else, whatever you called about, please know...I am still interested!

Today Mom and I had a big day. We shopped for more cars. I still didn't find one. The P.T. Cruiser I had my eye on has transmission trouble, according to the guys at Morin Automotive.

Then we went down to Santa Maria to get my big padded bandage removed and the drainage bulb pulled out. Ugh. It hurt! But, it was worth it. I am so happy not to have that plastic bulb hanging off my body any more! It feels so much better. I couldn't believe how far inside me that tube went. I kept my eyes scrunched up tight, so I couldn't see anything. But, I could feel Dr. R pulling it out and it seemed like it just kept coming and coming and coming.

With the padding gone, and all the tape that held it on gone too, I don't itch any more! Also, without that double D padding, I am now completely flat on my right side, except for a little swelling that should go down soon.

After Dr. R was finished, I kept my eyes closed and asked mom to put my shirt back on for me. I am just not ready to look at it or touch it. Mom looked at it. She says there is still a small bandage over the actual incision, so she couldn't see that. But, the skin on my chest looks really pink and healthy. I guess on that side I look just like a kid again...without the nipple.

When we got home, I had two packages waiting for me. Inside were: A pink ribbon Care Bear, a mechanical rooster in a pirate costume, and two cans of silly string. In case you know someone else who just went through a breast cancer experience, let me tell you...this is EXACTLY what will make them feel better about the whole thing. How can you possible feel down with a Care Bear, rooster pirate and silly string? I don't know why I didn't go out and get them for myself the very day I got diagnosed.

I am trying to figure out how to write that without it sounding sarcastic...but I am too tired to figure it out. I am just going to say...I am NOT being sarcastic.

Also, the rooster matches my kitchen perfectly, and the Care Bear matches my bedroom. These are friends who pay attention to the details!

Mom flies home to Maryland tomorrow. I'd be really sad about it except that I just feel so lucky about having her here for the last 4 weeks.

Just a few hours after she leaves, my wonderful friend C. arrives from Denver. She'll be here for a week.

After that, I should be able to take care of myself again.

August 13th Pathology Reports

I got a weird call from Dr. Rocco this evening. I mean, it wasn't weird that she was calling me, but what she said made me feel weird.

Here is what I understood from it.

I am fine I am fine I am fine...I still don't have cancer anymore. But, there is some interesting information in the pathology reports.

First, let me take a moment here to tell you what happened to my breast after they removed it.

Before surgery, I imagined that they would just slice it off and throw it in a big bin in the corner of the operating room. I imagined it landing there with other discarded body parts. Livers, melanomic skin patches, moles, diseased limbs, tumors and cysts would all mingle peacefully before heading off to the incinerator at the end of the day. In my mind, the bin looked like the ones we used at the costume shop to store rolls of fabric; about waist high with a metal rim, as big around as I can hug, and the same color as a brown paper bag. I guess I figured it would be lined with something...like a bright red plastic bag, and labeled "SURGICAL WASTE," or "SOLID PARTS."

I never asked about whether or not this image was correct, because every time it floated into my consciousness, I tried to block it out again. Sorry, to have shared it with you now. I know it's disgusting. Let me assure you, it is not what really happens. (I don't think so anyway.)

I got my first hint of the real story immediately after surgery. Unfortunately, it was so immediately after surgery that I was still pretty medicated and don't have any real memory of it. Here is the interaction with Nurse Susan as my mom (Sandy) recounted it.

***

Nurse Susan enters my curtained room for the first time.

Magic (from the bed-on-wheels): I changed my mind. I want you to put my breast back on.

Susan's eyes get big.

There is a long pause.

Sandy (apologetically) : She's a jokester.

Susan (seriously) : I'm sorry. We can't do that. It's in formaldehyde now.

***
Poor Susan. In relating this incident to me, my mom felt compelled to point out once again that I am "just like Grandpa!"

So now I picture it floating in pale green liquid in a jar only slightly bigger than one you would buy spaghetti sauce in. (I was never a large-breasted woman.) But that isn't accurate either.

Apparently, they slice it and dice it and do all kinds of test on it. They look at pieces of it under microscopes and do things to change its texture and consistency. (I will research more about this whole process and post it later.) It was the results of this post-surgical dissection that Dr. Rocco called to tell me about today.

One. I had an additional disease called Paget's in my right breast. It is also a kind of cancer, and was in the tissue of my nipple. She said symptoms are similar to dermatitis. As she described the symptoms...I said, "I had that!" And I did. In the early part of this year my right nipple had a tiny patch of dry skin that came and went away over few a weeks. I didn't think much of it. I used more lotion. The usual treatment is to either remove the nipple or perform a mastectomy. We just did that, so we're done.

http://www.cnn.com/HEALTH/library/DS/00771.html (for more info on Paget's disease of the breast.)

Two. It might not have been In Situ (stage zero, contained, non-life threatening) cancer after all. There are signs that it might have started breaking away from the milk ducts and spreading. The next step after acquiring this information would be to extract my sentinel lymph nodes on the right side and biopsy those for any sign of cancer. We just did that too. The lymph nodes were clean, so we're done.

Nothing has changed. I am still cancer free. I should feel comforted knowing that having the mastectomy and sentinel node biopsy was really really really the right thing to do, for even more reasons than we knew at the time.

But that phone call shook me up. It was like re-living the whole last month all over again, but this time condensed down to a 7 minute phone call.

I have cancer! Oh my god! I might need my nipple removed! Oh, Gross! No, I need a mastectomy! Even worse! Oh, and they'll cut my lymph nodes out! OW! Right! Okay! It's already been done! Everything looks good! You're okay now! Rest and drink lots of fluids, see you later.

Even thought I KNEW everything was okay. Even though I was sitting there in the parked car, looking out at the beautiful ocean and watching the surfers in the fog and hearing Dr. R's kind and reassuring voice in my ear...my heart started pounding and I started sweating and I felt like I was going to cry and scream at the same time.

This is the weirdest thing I have ever been through.

I'm not the only one with bad days

My freind C. emailed me this story to cheer me up and help me keep things in perspective.

My question to you (my beloved readers) is...at exactly which point do you laugh out loud?

Poor Guy.

Rob is a commercial saturation diver for Global Divers in Louisiana Heperforms underwater repairs on offshore drilling rigs.Below is an E-mail he sent to his sister. She then sent it to radiostation 103.2 on FM dial in Ft. Wayne, Indiana, who was sponsoring aworst job experience contest. Needless to say, she won.

Hi Sue, Just another note from your bottom-dwelling brother. Last week I had a bad day at the office. I know you've been feeling downlately at work, so I thought I would share my dilemma with you tomake you realize it's not so bad after all Before I can tell you what happened to me, I first must bore you with a few technical ties of my job.

As you know, my office lies at the bottom of the sea. I wear a suit to the office. It's a wet suit. This time of year the water is quite cool.So what we do to keep warm is this: We have a diesel powered industrialwater heater. This $20,000 piece of equipment sucks the water out of thesea. It heats it to a delightful temperature.It then pumps it down to the diver through a garden hose, which is tapedto the air hose. Now this sounds like a darn good plan, and I've used itseveral times with no complaints.What I do, when I get to the bottom and start working, is take the hoseand stuff it down the back of my wet suit. This floods my whole suit with warm water. It's like working in aJacuzzi.

Everything was going well until all of a sudden, my butt started to itch. So, of course, I scratched it. This only made things worse. Withina few seconds my butt started to burn. I pulled the hose out from myback, but the damage was done. In agony I realized what had happened.The hot water machine had sucked up a jellyfish and pumped it into mysuit. Now, since I don't have any hair on my back, the jellyfishcouldn't stick to it However, the crack of my butt was not as fortunate.When I scratched what I thought was an itch, I was actually grinding thejellyfish into the crack of my butt.

I informed the dive supervisor of my dilemma over the communicator. Hisinstructions were unclear due to the fact that he, along with five otherdivers, were all laughing hysterically.Needless to say I aborted the dive. I was instructed to make threeagonizing in-water decompression stops totaling thirty-five minutesbefore I could reach the surface to begin my chamber dry decompression.

When I arrived at the surface, I was wearing nothing but my brasshelmet. As I climbed out of the water, the medic, with tears of laughter runningdown his face, handed me a tube of cream and told me to rub it on mybutt as soon as I got in the chamber.The cream put the fire out, but I couldn't poop for two days because mybutt was swollen shut. So, next time you're having a bad day at work, think about how muchworse it would be if you had a jellyfish shoved up your butt.Now repeat to yourself, 'I love my job, I love my job, I love my job.' Now whenever you have a bad day, ask yourself, is this a jellyfish badday? May you NEVER have a jellyfish bad day!!!!!

August 13th Midnight Nipple Pinchers

I woke up in the middle of the night because someone was pinching my right nipple really hard! Well, that's what it felt like. I took two tylenol and tried to go back to sleep but it was hard. Could you sleep with someone pinching your nipple?

I tried to read for a while. I've been slogging through Your Inner Fish which is the perfect post-surgery book. It has an interesting enough concept that I want to read it, but is technical and dry enough that it puts me right to sleep! I was too sleepy too keep my eyes open for reading, but too pinched to sleep. So, I just layed there in the dark brainstorming about how to get Dr. Rocco on to Oprah so she can talk about breast cancer. I had some good ideas!

Finally the pincher let up and I went back to sleep.

I know people who have lost a limb sometimes have phantom pain and other sensations from the nerves that used to go to the missing apendage. I have never heard of phantom nipple syndrome! Have you? I wonder if last night was just my body trying to process the pain from my new scar trying to heal, or if these sensations will continue even after I'm all healed up.

August 12th Fourth Day of Healing.

Today's been much better.

The dressing itches and I can't wait to get it off.

I'm only taking tylenol for the pain.

Headache is gone.

In a much better mood.

Watching lots of movies.

Feeling hopeful about my career future.

Love to you all.

August 8th (back-up) Surgery day part two

I woke up in the same room I had started out in. There was some nice man in scrubs there and I asked him to get my Mom, which he did. I felt so anxious until she came back. It seemed like it took forever. As soon as she came in the room I wanted to ask her to help me to get up and get dressed and get out of there...but I was so sleepy. I couldn't believe I could be awake and be this sleepy. I felt like all my blood was made of lead and I was at the bottom of the ocean, so I went back to sleep.

A nurse came and asked how I was feeling and I said, "I'm asleep." She said, "Oh, I wanted to talk to you about something but I'll come back later."

Those aren't really words you want to hear after surgery, but I was so sleepy I didn't care. I went back to sleep some more.

After a while I woke up again and I still felt like I could sleep for years, but I really wanted to go home, so I tried to perk myself up and asked if someone could help me go to the bathroom.

I didn't really have to go, but I remembered that I would not be allowed to leave until I had gone to the bathroom...so I figured I'd better try.

A nurse (I think it was Kathy) came and walked me over to the restroom and I felt so dizzy when I stood up that I thought I might fall down, but I REALLY wanted to go home, so I tried to act normal.

I was able to pee, and it was bright bright blue in that white hospital toilet. I thought maybe they had one of those sanitizer tablets in there, but no. That was the radioactive stuff coming out of my body. I wanted to go and get my camera, but I was too tired.

Kathy (I think) helped me back to my bed and I sat there and started shaking really hard. My whole body was shaking and my teeth were chattering really hard. I didn't feel cold. I don't know if it was a side effect of the anesthesia and other chemicals or if I was just scared...but I didn't try to fight it. I just sat there and let my teeth knock against each other. The nice thing was, it kind of woke me up enough that I felt like I could get my clothes on.

I let my mom dress me. I didn't even try to look down at my chest to see what my bandages looked like. I just wasn't ready to face it. I just wanted to get home. I felt like a little kid again, needing her mom to pull her pants up for her.

Then the nurse came back to talk to me now that I was awake. Apparently, someone had gotten accidentally stuck with one of my needles during my surgery. She didn't explain how it happened exactly, but I guess no matter how careful they are, sometimes people get stuck with contaminated stuff. She did tell me that one time there was a used needle on a table and it just rolled right off the table and stuck someone in the foot...right through their shoe! Being a nurse is really a risky job, I guess.

Anyway, she asked me to sign a form and consent to a blood test to see if I had any blood borne pathogens so that the person who got stuck with my needle could sleep easy tonight. I said, "sure," and signed it. Mom thought it was weird that they would ask me to sign stuff and consent to procedures when I was so doped-up, but I'm sure I would have made the same decision even if I'd been clear headed.

As I started to sober-up a little, I noticed that my throat was really really sore. I guess they put some kind of tube down your throat while you are knocked out. It hurt really bad. Much worse that my surgery wound. I wish I'd been told to expect that. It felt really violating to realize something has been shoved down your throat while you were passed out. They gave me a grape popsicle and I enjoyed it, but it wasn't like it made everything okay.

Mom told me that Dr. Rocco had stopped by the waiting room to talk to her before she headed home. Dr. Rocco said that surgery had gone just fine, they had removed my lymph node to check for spreading cancer and they were completely clear! This was great news because it meant that I was now totally cancer-free. Apparently, my lymph nodes were really hard to find and Dr. R had to dig around for a while to find them. She was looking for them at the side up my body, kind of just past my breast and up towards my arm pit. She took out what looked like one but was actuall four of them all in a little bundle together.

A young man named Joe in a white lab coat came by with a rolly-cart full of needles and test tubes and color-coded labels. I always ask to have blood drawn from my left arm because I have a big mole on my right arm that is exactly where they usually stick the needle. But, I still had an IV in on the left side so Joe said he would take the blood from my right arm. I didn't argue. I was so sleepy.

After he rolled away with his little cart, the nurse came back to give us instructions. She showed Mom how to empty the drainage bulb that collects the fluid from my wound. (I looked away...not ready to deal with this just yet.) Then, she told us to make sure I didn't put any pressure on my right arm or have any blood drawn from that arm. My mom spoke up and told her how Joe had just been in and taken blood from my right arm minutes ago. The nurse pressed her lips together like she was mad and stayed real quiet for a moment. Then she told us she was sorry, that shouldn't have happened and told us to look out for pain or swelling. "But it will probably be fine," she said. It was.

After my IV was removed I was ready to go home! YAY.

The nurse asked me if I was hungry and I told her, "Yes! I want to go get fish tacos from Cabo San Luis." She said that probably wasn't a good idea and handed me a little bag to carry in my lap on the way home in case I needed to throw up.

I didn't need that bag. I needed something more like a bucket.

I felt okay for the first twenty minutes or so of the drive. Then, at some point I asked Mom, "Can we stop at a gas station and get some ginger-ale? I need something to calm my stomach if I'm going to make it the rest of the way home." She said, "Okay honey," and I shut my eyes. I really didn't feel that bad, just a little queasy.

We drove on for a few minutes more, and I didn't start to feel any worse. It was like a little voice deep inside me bubbled up and said..."You need to pull the car over." So I asked mom in what I thought was a real relaxed voice, "Can you pull over?" Boy...she pulled that car over so fast I couldn't believe it. Thank goodness there was a nice wide shoulder on that section of the 101. I looked at the door and thought, "If I just had some fresh air, that would be nice." So, I opened the door and leaned out.

All of a sudden I opened my mouth and all this water poured out of it from I just didn't know where. I felt like my head was a spigot and someone had turned it on when I wasn't looking. I didn't heave or strain, it just poured out of me. Then it stopped. Then some more came out and this time it was dark colored and that worried me until I remembered the grape popsicle. I leaned out of the car for a while, and mostly clear liquid kept pouring out of me. I felt so happy to have short hair that stayed out of the way without any effort on my part.

I don't know where all that liquid came from. I hadn't had much to drink that day. It's true I was hooked up to an IV all day, but that fluid doesn't go into your stomach...so where had it come from? I just don't know.

The rest of the ride home was uneventful.

Once there, we crashed on the couch, ate yogurt and watched movies.

I was mostly just tired. It all seemed so surreal. Even the fact that my breast had been removed was still unclear to me. The bandaging they put over the surgery site was all built up and rounded out just like a breast. It was easy to imagine that I still had one under there...in a serious padded-out push-up bra. I haven't asked yet, but I think they did that on purpose. That way, your first week home after surgery is just spent dealing with recovering from surgery. Your body doesn't seem that different. You still have something to cup if you put your had to your chest. It's was higher up and firmer and bigger than what I had to cup on the left side, but I could hardly complain about that. It certainly didn't feel like I'd lost some part of myself.

I could put off that realization for another week.

August 11th Third day of recovery

Today is a bad day.

The first day after surgery was okay. I took lots of drugs and watched my favorite movies. Good friends stopped by to check in on me and bring me home-made treats. Flowers were delivered. Mom and my ex (who I still love so much) babied me all day long.

The second day after surgery was okay too. It was Sunday. I slept alot. More friends. More movies. More food. More flowers. I cried because the whole thing has been sad and scary. I cried because I feel so loved and supported by such incredible wonderful people. I cried and felt better.

Now it's Monday; the first business day of my new cancer-free life. I thought I'd feel better enough by now to stop taking the Vicodin and smarten-up for a while. After all, I've got stuff to do! I've been putting off really dealing with the other half of my double whammy for a full month now. It's time to get a job and a car and rent my house out and file for unemployment and write about ten thousand thank you notes!

Instead of getting a good night's sleep, I woke up at 1:00 am with a serious headache, the kind that feels like there is an iron band around your head and it is much much much much MUCH too tight. I took some ibuprofen and went back to bed.

I woke up around 7:30 feeling like I'd been beat up. It hurts a little where I had the surgery, but mostly my whole body is cramped up and achey from walking, sitting and laying down funny all weekend. I want SO much to lift things with both hands, put a shirt on over my head and take a nap on my right side. I want to tear off all the dressing and tape and scratch myself silly. I want my head to stop hurting!

I managed to do a little paperwork. I posted an ad on craigslist so someone will come and live in my house and pay my rent for me. I filled out the form to appeal the decision of the Employment Development Department of California so that maybe I can collect unemployment afterall. I balanced by checkbook and paid my bills.

Then I just lost it. I feel so crummy. I feel so angry and crabby and mean and ugly and I just hate everyone and everything and wish I could take a shower. (I can't because the dressing can't get wet.) I cried some more but it wasn't the kind of crying that feels like a relief and things seem brighter when you stop. I cried and it felt awful to cry and I still felt awful when I stopped. I just feel awful and I can't say exactly why and I can't say exactly what would make me feel better.

It is weird to have this huge bandage and sore spot and know that I am healing, but that even when I'm "all better" and they remove the bandage I'm not going to be good as new. There's going to be part of me missing. I feel like a silly whiney baby being so upset about it. I'm so glad I don't have cancer and so lucky it was never life-threatening. I'm so grateful I didn't have to go through chemotherapy and that I had such nice people taking care of me in the hospital.

I don't feel like I won't be pretty or sexy or desirable anymore.
I don't feel like some part of my life is going to be worse now that I only have one breast.
I don't know why I'm so angry and upset.

But I am, and I thought I'd write about it because so much of the stuff I read about getting through cancer is UPBEAT and POSITIVE and sometimes I just want to read about how much it really sucks.

I guess I should have expected to feel like this today. It's the first day after my surgery that I'm not all drugged up. Of course this would be the day that I would have a whole bunch of ugly confusing feelings come up. I wish I had given myself permission in the beginning of the day to just do nothing today but have these feelings and do what I needed to do to deal with them. I wish I hadn't struggled to "get a grip" and be my business-minded, take-charge self.

I'm going to give myself permission now and have popcorn for supper and watch Romy and Michelle's High School Reunion and A Room With a View.

P.S.
I told Mom, "I'm crabby today. I'm upset and grumpy and hate everything." She just looked at me all loving and kind and said, "Okay sweetie." I know some of you might try to argue with me on this point, but I am sure I am right...I have the best mom in the world.

August 8th (back-up) Surgery Day, part one

What do you wear to go and get your breast sliced off? I wanted to be elegant, yet comfortable. (A., I know you'll recognize this jacket.)

Mom is wearing what I came to think of as her "power jacket." It is a nice tailored jacket that she found in the closet of her guest room...where I've been storing the left-overs from the swap meet I hosted a while ago. (M.F., I think this used to be yours.) She looks great in it, either with jeans or dressy pants. She's worn to my doctor and lawyer appointments and it seems like every time she wears it, we had a good day.


It wasn't long before they gave me a new outfit. I particularly liked the socks (which I got to keep.) I don't know why I am wearing my sunglasses in this picture. I think the Valium must have been kicking in pretty good by this point. I look way too happy to be in the hospital. I mean, the socks aren't THAT great.

There are a lot of other details that are foggy about the whole day...but here's what I do remember.




Before they started prepping me for surgery, Dr. Rocco stopped by to say hi in her cap and scrubs. She looked really cute and it was nice to see her there. I was so glad she took the time to come and give me a hug.





The hospital gown they gave me was soft and felt like it was made of paper. It had pockets and tied on the side (instead of in back.) That was nice, but it was not the best part. Once I got settled into the bed-on-wheels, a very nice nurse (I think it was Terri) pulled back this little flap on the front of the robe and attached a hose to a valve hidden underneath. The hose looked like something from a vacuum cleaner, but instead of sucking air...it blew! It gently filled up my robe with warm air...just like when we were kids in pajamas after our baths and mom would stick the blowdryer into the neck of our jammies and they would puff up with warm air. (S., do you remember that? Did anyone else's parents do that?)

After she left, Eric the Nuclear Medicine Technician came to wheel me away. (Isn't that an impressive title?) He left me in a hallway for a little while and I sang out loud to myself to keep from getting bored or scared. I remember wondering what people who don't sing do in that situation. Mom said Grandma plays word games in her head. I sang, "I'm gonna sit right down and write myself a letter," and tried to sound as good as Lena Horne.


A nice couple walked past me and asked how I was doing. I said fine, and they apologized for asking since I was in the hospital and I must not really be doing fine, but they said they were glad I was okay and hoped everything would be even better soon. I was really happy to see them, because I was getting lonely in that bed in the hallway. I was getting cold too.


Just as I was starting to be really unhappy about being cold, and frustrated because I couldn't remember all the words from the song, a big guy in blue scrubs walked by and said, "Are you cold?"

"Yes I am!" I answered. He got me a second blanket from what seemed like a secret closet and tucked it in all around me. But, he could not help me with the lyrics problem. Later I found out his name was also Eric, and he was also a Nuclear Medicine Technician.


Finally, Eric #1 came back and wheeled me into a room with a big machine in it. The Machine looked like a giant waffle iron, but with a smooth surface...like it would make waffles that were flat on top and about as big as my kitchen table. I remember thinking that the machine looked old and beat up. I couldn't imagine what they were going to use it for...but it turns out they didn't use it on me at all.


Eric lowered the hospital bed down so I was lying flat. I remember being irritated that he didn't give me any warning before he did it.


Now I am getting kind of confused about the order things happened in. At some point, I was in a different room and had to get out of the bed and onto a conveyer belt type contraption that rolled me into a big tube like an MRI or CT scan machine. I think that must have happened first...and I think it was still Eric #1 handling me.


The reason I think I went into the conveyer belt room first is that my breast still looked normal when I was in that room. In the waffle-iron room, they did stuff that made my breast look like it had been stung with bees and smeared with mud.

I know for sure that my breast looked okay in the conveyer belt room because as Eric #1 was pulling back my robe to get my breast exposed for the procedure, I told him, "You're the last person who is ever going to see my breast like this, so will you just take a moment and appreciate it?" This seemed to embarrass him. At the time I thought he was just uncomfortable because he was just trying to do his job and didn't want to think about the fact that I was a nice lady with a nice breast who was about to lose it forever. But, now that I am writing about it, it really does seem like the waffle-iron room happened first. In which case, maybe he just looked uncomfortable because I was asking him to appreciate a breast that looked like it was smeared with mud and had been attacked by bees. Poor guy.


I fell asleep inside that machine and I'm sure I snored.


So, I know you're wondering what happened in the waffle-iron room and here is what I remember. Eric #1 introduced me to Dr. Church whose face I don't remember but he had on very nice trousers. He opened a plastic bag that had 3 giant Q-tip looking things in them that were pre-soaked in some kind of brown liquid. He used these to swab the brown stuff all over my breast. Then Eric opened some kind of bottle and accidentally spilled something all over Dr. Church! I remember telling Dr. Church not to worry because the stuff was splattered across his back...but didn't get on his nice pants. Then I told him he shouldn't wear such nice pants to work and why wasn't he wearing scrubs all over instead of just up top? Even though I was so sassy to him, he was very very nice to me.


He had to put a needle right into my nipple. I think the first injection was lidocaine, so I wouldn't feel the other injections so much. He apologized about 3 times as he was getting ready to do it...and then, (I thought this was so cute) he said "Excuse me," as he actually did it. I'm not gonna lie about it...that nipple-needle HURT.


Then he gave me several more injections all around my nipple that made the skin swell up like I had hives. I think this was the radioactive stuff that made it possible during surgery to identify which lymph nodes my breasts drain to first. The reasoning is...if the cancer has spread outside my breast at all...it would spread to these first. They are called "sentinel nodes" and they were going to be removed and biopsied during my mastectomy.


I got to go back to my first little room for a while, and I asked mom to take a photo of my poor breast. It was still all brown but I was disapointed to see that the hive-like swellings had gone down, so I couldn't get a picture of that. That was the last time I saw Mom before the actual surgery. They made her go wait in the waiting room and a really pretty nurse named Jojo came to wheel me back to a "holding room."

There were lots of other people on beds-on-wheels in the holding room and there were lots of magazines but I couldn't reach any of them from my bed. I tried to push myself over one of the magazine racks by shoving myself off a table, but the table was on wheels too and must have been lighter than my bed, because it just rolled away from me. Then I tried to rock back and forth in the bed to inch my way over to the magazines. I remember being frustrated because I couldn't get close enough to reach one, but maybe I did. Later on...I had a magazine in my lap. I don't remember getting it and I sure don't remember reading it...but how else would it have gotten there? The ad on the back of the magazine had a photo of a big green leaf shaped like a heart and I remember thinking about all the things in nature that are shaped like hearts and how they are like god's little love notes to us.


Jojo wheeled me over so I could go to the bathroom. I must have taken a long time because she knocked on the door and asked if I was okay. When I got back in my bed I said, "Hey, did you take one of my blankets?" She said, "Yes I did," and she got me a new one that was warm like it had just come out of the dryer.


Dr. Johnson, my anesthesiologist came in to meet me. He asked me some questions but I don't remember what they were. I'm pretty sure he asked me my birthday. (It seemed like EVERYONE kept asking my birthday.) He had a nice deep voice.

Several other nurses came and went and I tried to remember everyone's names, but it got too confusing. I do remember a young man in a white shirt named John who wheeled me down the hall. I teased him and told him "Go Faster!" and "Pop a Wheelie!" but he wouldn't because he got in trouble last week for going too fast with a patient.


At some point I was in my little bed-on-wheels in the elevator with Eric #2. I was singing "We're just two little girls from Little Rock" and I asked Eric #2 if he knew who sang that song. (It is the opening number from Gentlemen Prefer Blondes.) He didn't know and I gave him a hint. "She lives in Santa Maria!" He still didn't know, so I told him it was Jane Russell. He said, "Oh, yeah," like he knew who she was, but he might have been faking it.


A little later, we got to a room that seemed like it had several people in it. At this point I was really confused, but I heard this voice behind me and I said, "Hey! That sounds like Dr. Johnson!" I turned around in my bed and there he was smiling at me. If I'd been thinking clearly, I would have known that if you hear your anesthesiologist behind you, you're not going to be awake much longer. But, I was not thinking clearly, I was just happy to see him and proud of myself for recognizing his voice and remembering his name. That's the last thing I remember from my two-breasted life.

Rock Stars at Dr. Rocco's

Here is a photo of me with my wonderful surgeon, Dr. Monica Rocco. She is the Surgical Director at the Marion Cancer Center...and she has been just everything wonderful you could want from a doctor. I cannot imagine having better care than I have had from her. She really puts the CARE in "Healthcare." Everyone else at her office has been wonderful too. Liz, my cancer care coordinator is here in a black sweater. Suzanna (in pink) and Bertha (with the wavy hair) are below.

I hope no one reading this ever has to go through any of what I have been through these last couple of months...but if you do, and you live near here...go see Dr. Rocco!

August 9th Healing

I'm doing great.

Watched movies and napped all day.

There is so much gauze and stuff over the place where my breast used to be that it looks like I got augmentation surgery instead! I'm at least a double D on that size.

The whole surgery experience was interesting and I'll write more about that later.

Just wanted you to know I'm home and healing and really looking forward to the next chapter of my life.

Thank you all so much for helping me get through this.

CANCER FREE!!!

This is Jan and Carrie logging in for Mage. She is Cancer Free! Woo hoo! She sounds good and is on her way home with her mom to recuperate. She said that she will be recovering for the next few days and would love visitors. (Just not tonight, please.) :)

Hugs everyone. Love to all of you.

August 8th Becoming an Amazon

I think "Amazon Upgrade" sounds so much better than "Mastectomy!"
(Thank you for the suggestion, J!)

Actually, according to Wikipedia; the word "Amazon" may actually mean "without a breast."

Among Classical Greeks, amazon was given a naive etymology as from a- (privative) + mazos, "without breast", connected with an etiological tradition that Amazons had their right breast cut off or burnt out, so they would be able to use a bow more freely and throw spears without the physical limitation and obstruction; there is no indication of such a practice in works of art, in which the Amazons are always represented with both breasts, although the right is frequently covered.

http://en.wikipedia.org/wiki/Amazons

The photo shoot yesterday went great. I don't think it's prudent to put up topless photos of myself on this blog...but if you want some just let me know. I like that there is now proof of the fact that I once had two breasts! Maybe if I ask really nice, D. will repeat the favor and take some "after" shots once I've healed.

R. loaned us her Subaru Outback this week, which has been great! (I still haven't decided on a car to buy, and the rental car was getting really expensive.) I folded down the back seat and decked it out with a sleeping mat and blankets so if Mom get sick of being in the hospital today, she can go out to the car and take a nap. If you have her cell phone number, please call and check in on her today. I'll be drugged up or passed out for most of the day, so I'll be fine. But, I worry she'll have a rough day. The hospital is nice, but it's still an awful place to have to spend the day.

Also, after 35 years of doing her best to make sure I'm okay...it must be hard for her, knowing that someone is going to be coming at me with a knife in a few hours. Even worse...rather than doing something to keep it from happening, she is the one who is driving me down to the place where they're doing it! It must be a real head trip.

I have to go get ready now. My bedroom is a mess and I want to come home to a clean home.

(Thank You, R. for cleaning my kitchen yesterday while we were gone! It was a wonderful surprise!)

Also, Thank you C. for sending me your old laptop! It came yesterday and I haven't really opened it yet, but I'm so glad to have it. (I did read the card and just the picture on the front made me cry. You're such a wonderful friend.)

The next time I update this blog...I won't have cancer anymore!

And...I will be a true Amazon!

August 7th Pre-op

Yuck. It sucks to wake up and realize today is the last day you will have both your breasts. I felt like crying yesterday, but today I just feel mad. Damn it.

Here are my plans for the day.

Drive down to Santa Maria for my pre-op appointment at the Marion Cancer Center. I think this means blood-work and usually a chest X-ray. I don't need the X-ray because I had one in June when I had that awful bronchial infection.

Afterwards, I am coming back up to San Luis Obispo for a photo shoot. As mad as I am this morning I can't help smiling about that. I asked a photographer friend of mine to take some topless shots of me while I'm still symmetrical. She usually shoots things, not people, but she's really talented and I think it will be fun. Maybe I can get her to take some "after" shots later.

Here's her website.

www.dinaperkins.com

After that, Mom and I are going on a walk on the architecture trail in Poly Canyon. I'll try to put up a picture. It's very cool. We are going with some friends who are leaving town for the next six months. I would miss them anyway, but it's especially hard to see such an important part of my support network dissapating right now when I feel so needy. I don't want anyone to move away! In fact, I want all my friends to move in with me. We could set up tents in the back yard and just have a big slumber party for the rest of August and I would never have to be alone! Wouldn't that be fun?!

Anyway, these dear and wonderful friends of mine have offered that I could come and stay in the beautiful studio apartment behind their house while they are away. I think I'm going to take them up on it and try to sublet my little Los Osos house out fully furnished. That way, I wouldn't really have to move...just pack a suitcase and go stay in San Luis for a while. I could live rent-free while I recover from this cancer bullshit and think about what the hell I want to do for work now.

I don't want to go back to selling drugs and I thinks it's going to take at least a few months of research and networking and informational interviews before I even have an idea of what kind of jobs I should try to be getting. This will all be SO much easier if I don't have to worry about paying rent while I'm doing it.

I had a little money saved in case of a sudden loss of income. I had a little money saved in case of a health emergency. I did not have enough saved in case of both happening at the same time. You'd think after this experience my advice to everyone would be: "Save more money!" but it is not.

My advice is;
Cherish your friends and family.
Cherish your health.
Wear low cut blouses and show off your cleavage at least once in a while.
When you need help, do not be afraid to ask for it.
When others need help, do not underestimate the impact of just telling them you love them.
Do your monthly breast exams!
Do not settle for doctors who treat you like your opinions and desires are unimportant.
Cherish your friends and family.

August 6th Results from Biopsy #2 and genetic testing

The good news is; we got the results back from the genetic testing and I do NOT have the aberrant gene that increases my risk of getting additional breast and/or ovarian cancers.

The bad news is; lump #2 is malignant and far enough away from lump #1 that a mastectomy is necessary to remove them both.

The other good news is; lump #2 is the same kind of cancer as lump #1...ductal carcinoma in situ, also known as "stage zero." That means, surgery will take care of it and I will be cancer free!

The other good news is; no need for radiation therapy! (There won't be anything left to radiate!)

I can't think of any other good news right now. I am pretty freaked out about getting my breast removed the day after tomorrow.

I kind of wish I was dating so I could get felt up one last time! But, having a sweetheart right now would add a whole extra unpleasant twist of emotional insecurity to this process...so I guess it's all for the best.

If love and support could cure cancer, I wouldn't have it anymore.

I know I've mentioned several times how sweet everyone has been to me since my double whammy hit. I've been wanting to write about it, but I'm afraid I'll leave something out and someone will feel like I didn't appreciate them. But I'm going to risk it and hope you all know that I love and appreciate you for everything you've done...even if it's just a voicemail telling me you are thinking of me.

I won't mention names, so you can all stay anonymous if you wish...but I just have to share some of this.

One:
Some very dear friends of mine offered to loan me their truck so I could go pick up a friend from the airport, only 12 miles from my house. (Remember, when I got fired they took my company car away.) It was so sweet and generous of them. This was just a couple of days after I got my termination/diagnosis news and I was just starting to put the pieces back together. They asked me if I could drive a stick shift, and I said yes...even though it had been a few years since I had. Iwas nervous, but I thought I was doing fine. I was paying really close attention to when I was shifting...trying not to shift too early or too late...and then I heard this big popping noise. Uh oh. I pulled over and the truck was shaking really hard and all the engine oil was gushing out the side like one of those fire hydrants in the city on a hot summer day when they open them and let the kids play in water. Apparently the truck threw a rod. To the best of my understanding the engine is now completely destroyed. Geez. I feel just awful about it, even though I have been assured that it was not my fault and that these things just happen sometimes. My friends were real sweet to me about it, and I just hope that I can do something for them in the future to help make up for the expense and trouble they are going through about the truck. Here is the proof that these are just exceptional, loving, generous people. AFTER they loaned me their truck and got it back destroyed...they loaned me BOTH their brand new mountain bikes so that my visiting friend and I would be able to ride around Los Osos together. So far, nothing bad has happened to the bikes.

Two:
Several people have offered that I could come and live with them for free if I need some time to deal with the cancer stuff and figure out what I'm going to do for a job. Gosh! People are so nice to me! (It's looking like I might take somebody up on that, at least for a few months.) However, the most exceptional offer came from my landlady. She told me she wished she could tell me I could just stay in my house for a few months rent free...but since she can't afford that, I could come live with her in HER house for as long as I needed to. She has a spare room and would even FEED me. It seems like all the time people complain about their landlords...and here I have one who is willing to give me free room and board if I need it. How did I get so lucky?

Three:
My landlady is not the only one trying to turn the usual client/service provider relationship on it's head. My massage therapist offered me free massages! My personal trainer (athletic coach) has been researching cancer diagnosis procedures and treatments on line to share information with me. AND she and her husband gave me the computer that I am now using to deal with unemployement filing, searching for jobs, updating my resume, researching cancer treatments, finding housemates, paying my bills on time, shopping for cars and writing this blog!

Four:
Lots of people want to make sure I'm getting alternative healing attention too. I figure if somebody thinks it will help, I might as well try it. My cousin's been researching turkey-tail mushrooms. Another dear friend is sending me bottles of marine phytoplankton to take everyday. It must be expensive, and I am so grateful, especially since it tastes good. More dramatically, one night when I had been sick all day, I was poking around for a midnight snack and found my fridge had been stealthily stocked while I was sleeping. It was filled with healthy snacks and anti-oxidant rich beverages like white pomagranate tea and berry smoothies. Also, there were half a dozen bottles of Kombucha, a fermented beverage that I am unsuccesfully striving to acquire a taste for. The most dramatic offer yet came from my sister...mother of my two very young nephews. She emailed me a link to an article that extolls the virtues of breast milk in treating cancer. She's still nursing her youngest and the subject heading of her email was, "I've got this!" She is going to freeze some and send it to me. Now that is a devoted sister! Here is the link.

http://discovermagazine.com/1999/jun/featcancer
http://www.infactcanada.ca/milkkillscancer.htm

I've got lots more to add to this list but its getting late and I have to go to bed now!

Love to you all,
Magi