Sunday, January 29, 2012

Cancer can suck it

Last night the floodgates opened. I cried torrents. I sobbed til it was hard to breathe. I huddled as tightly as I could against Andy, saying over and over "I'm scared. I'm just so scared." He asked whether I was rethinking the surgery, whether I'd changed my mind. I told him I didn't know. I said that it didn't matter what I chose, all my options sucked. I read recently that there are no shitty choices, just shitty options. Because at the heart of it all, as the bracelet I wear says, "CANCER CAN SUCK IT."

I couldn't sleep, so I got up and went out into the kitchen to think. In the dark, wee hours of the night, I realized that it wasn't about whether my choice of treatment was in question, but about grief. I'd been told that at some point I'd grieve the loss of my breasts, but it hadn't happened yet, so I had set it aside, thinking that if it did happen, it would be after surgery and I would deal with it then. I chose to have immediate reconstruction, knowing I could never look in the mirror if I didn't, I really thought that I'd be ok. My breasts are already scarred from my reduction over 20 years ago, so that wouldn't be too different.

But last night, Andy's arm brushed against the side of my breast and suddenly I heard a thunderclap inside my head as the realization hit me that I will probably never feel that again once I have surgery. I'll never have normal reactions to cold, to arousal. Despite knowing I'm nearing 45 and am perimenopausal, the knowledge that even if we were to somehow have another child, I will never nurse another baby, shrieks in my heart.

I try to think about how lucky I am. My cancer was caught early. Because of the treatment path I've chosen, I won't need radiation or Tamoxifen. As long as nothing microinvasive is found on my final pathology, I most likely won't need chemo, either. I'll recover from surgery, and be largely done. I don't let my mind wander to the things that cancer is taking from me, but rather I spend my days thinking about what cancer has to teach me. I try to present a positive face to the world, to draw on the well of inner strength I've discovered this past shitty year. People are always telling me to think positive, to be strong, and I do, and I am. But I think maybe that's done me a disservice.

I chose last week to start my time off work early. I hate my job, and continuing to work and to go about my life as normally as possible kept me choked off from my deepest, darkest fears. I wasn't truly processing what's happening to me, what I'm about to go through, how it's already affecting me. I paid it great lip service, letting those around me think that I was some kind of superwoman, figuring it would help me not give into the depression. But once I decided to stop working, to spend the time til I leave for the hospital actually taking care of my emotional health for a change, all that changed. Cancer's lessons began in earnest, and not all of them are positive. Don't get me wrong, some are amazing: there is the realization that I do not want to remain stuck at this job I hate, that I deserve to find something that allows me to fulfill my financial obligations in a way that gives me satisfaction. The continuing discovery of my seemingly neverending well of inner strength. The blossoming of my creativity. The joy that opening up to my friends, learning to trust people with my feelings, brings. The understanding that pain is pain, it's not a relative thing. That hating my job and wanting to find another way to earn money doesn't make me a horrible human being because there are people who would do anything to have a job at all. That yes, I can be angry and frustrated with people who tell me they're jealous that I get a tummy tuck out of this whole thing.

The price that cancer extracts is so high. I've spent so much of the past 4 months terrified, anxious, depressed. Finally having all the information on what I'm facing, then choosing a treatment path and having a surgery date, helped immensely. But still... in just over a week I'm going to have the biggest, riskiest operation of my life, trusting that the people taking care of me when I'm under anesthesia do their jobs to the best of their ability, honor their oaths, and that my body cooperates. I don't want this surgery. I don't care what my body may look like later, how much better my clothes may fit. I don't care what the lessons I learn do for me, because right now, they are doing things TO me. Tomorrow I hope I can pull myself back up and face the world again, but at this moment, I am in the tight grip of terror, of nebulous fear, of paralyzing grief. I want the world as it was in the seconds before I heard the life-changing words "you have cancer." I want a magic wand that's not broken, a fairy godmother who will come and take it all back.

I just want to not have cancer. This is the single worst, most terrifying thing I have ever faced, and while I understand how the world sees me facing it, that is not my truth, or at least it isn't all the time. Right now my big-girl panties are in the wash, and I feel small, vulnerable, and more afraid than I have ever been.

Tuesday, January 24, 2012

A postponement, and a bit of grace

Last week (January 17th) I woke at 2 a.m. feeling like I'd swallowed razor blades. A cough, postnasal drip, and a slight fever followed. By the time we made it to UAB for my day of pre-op appointments I was well and truly sick. I was so pissed - I'd been washing my hands til they hurt, not touching my face, wiping down everything with sanitizer, and still I caught the crud! As soon as Dee (my plastic surgeon's PA) came in, she asked if I was aware that it was imperative I be 100% healthy for 7 consecutive days, and as it was then day 8, I wasn't going to make it. Surgery had to be postponed. At first I was really upset, and I cried a little right there in the exam room. The next few days, however, I was too sick to care; I slept and nebulized (I'm asthmatic, another reason the delay was so important). A course of antibiotics and a lot of rest meant I got better fairly quickly; it's been a week and I'm down to just a bit of residual congestion.

I've come to realize that maybe this was a wake-up call: I wasn't ready. While the overall journey has taken what seems like forever (four months since diagnosis), when I got the call with my original surgery date, I had less than two weeks. And despite knowing that the treatment I've chosen is right for me, it felt rushed. There are things I want to do before the long recovery: clean the house top to bottom, weed the garden, make sure the finances are caught up, gather simple knitting projects, even load my tablet with books on the Kindle app. But most of all, I needed to feel mentally and emotionally prepared, and I just wasn't.

The other night Andy told me something very simple, just something he'd been reading. In doing so, he inadvertently opened an emotional can of worms for me. Things I'd put on a shelf, shoved to the back and locked away were suddenly right there in my face. He felt badly for hurting my feelings, but in truth, what he did was push me to confront the very things that were keeping me from being able to feel truly prepared (or as prepared as one can be for this sort of thing) for my upcoming surgery. As much as it's hurt and sucked, this is work I need to do, another in the long list of "what can cancer teach me?" Much of it is too private to put out on the Internet, but I will say that we all have our personal demons, and ignoring them doesn't make them go away. Putting on a pretty public face doesn't change a thing; in fact, what it actually does is cause others to think that you're doing great when in private, it's a different story. This is how it's been for me. I'm having to learn to really pay attention to my public face; apparently I'm a damn good actress without even trying, and nobody knew how I was really feeling, how terrified I am. I don't ask for help, I don't offer up my inner thoughts and feelings. Now, with cancer, I have to, or nobody knows how much support and help I really need.

Andy told me that he watches me and doesn't understand how I function, how I get up every day and keep going. Someone on one of the forums I'm on said "I know your days are good and bad, you freak and you don’t. But your strength is amazing to me. Don’t deny it - you could be a sniveling ball of mess at this point and the fact that you keep breathing, to me, means that you've got a ton of grace in all of this." I read it to Andy, and he agreed. This my answer:
"When you ask 'how do I function,' my first thought is to respond 'I don’t,' but the truth is that I do. I am sometimes a sniveling ball of mess, believe me, but I don’t let that be all I am, because I have to be a wife/mother/sister/aunt/friend/employee/etc and the world, rudely, just keeps turning and having expectations. Laundry still needs to be washed, groceries bought, appointments kept, bills paid. But it leaks out if you pay attention. I mess up simple knitting. I blow up over seemingly small things. I wander off in the middle of IM conversations. I don’t understand when someone speaks to me. I try to convey something and I can’t find the words. I miss a bill payment. I misspell things a lot. I cry - often. I hiccup when I hold back tears. I don't sleep well and when I do, I often have bad dreams. I need to be held a lot, and it’s not practical all the time. I get very afraid that I'll be judged by those who either don't know, or who know but haven't been there so have no frame of reference (nor would I wish it on them)."

Surgery has been rescheduled for February 8th. We leave for UAB the 7th, as I'm having a sentinel node biopsy (this makes sure the cancer hasn't spread to my lymph nodes, which we don't think it has)  and need to visit Nuclear Medicine to have dye injected the day before surgery. The surgery itself is very, very long - up to 12 hours. I have no idea how being under anesthesia for that long will affect me, mentally or physically. I'm trying to stay positive, to plan to be as active as I can as soon as I can after surgery, but the truth is that the unknown scares everyone, and this is pretty damn unknown.

A lot of folks have asked what they can do. I was told that while Andy and I are generally pretty independent and don't ask for help, we are to suck it up, because helping us lets others feel less helpless in the face of something as scary as cancer. The things I know we'll need are meals (something we can freeze, with instructions and your name attached), light housekeeping once my mom goes home (she'll be here for a week after I get out of the hospital), distractions, especially during the day when I'm home by myself (there is only so much TV I can watch), I imagine Quinn would love folks to come hang with him, or pick him up and take him out occasionally. Andy will need private time, which is hard the way our house is structured. I'm sure there are things I'm not coming up with, so suggestions and offers are sincerely appreciated! This is overwhelming to me, and while we are blessed to be so well-loved, it's also very hard to accept the outpouring of help when we're accustomed to being the ones doing the helping, not needing the help!

Friday, January 13, 2012

A link and a date

My surgery is scheduled for Wednesday, January 25th. We'll go up the day before, as I have a 1:00 appointment in Nuclear Medicine to have dye injected for the sentinel node biopsy.

I'll post more soon about my thoughts and feelings regarding the upcoming surgery. In the meantime, I wanted to give a shout-out to the lovely Veronica Seimet, Owner/CEO of Boobie Wednesday. She and I have been emailing about our diagnoses and choices; her Stage 0 cancer was only on one side, and she chose the lumpectomy/radiation/Tamoxifen route. She has some incredible pictures posted on her blog that chronicle her biopsy, lumpectomy, and radiation through 5 weeks post-radiation treatment. They aren't necessarily for the faint of heart, as Veronica's radiation burns are rather spectacular. However, with stupid-special snowflake skin, this is something that played heavily into my own decision to avoid radiation entirely.

Veronica's before-and-after pictures are here, for those who are interested.

Sunday, January 8, 2012

A bit of peace at last

My plastic surgeon wisely told me that there would come a point at which I would know. The right decision for me would make itself known, he said. I had no idea how this would happen, but it did. It started when I was writing the final two paragraphs of the previous post, and solidified at Friday's knit night. I pulled up the previous blog entry on my phone and it was passed around, saving me from having to repeat myself or make a loud proclamation in public. I was asked insightful questions, offered loving advice and thoughts. I've always known I had a fabulous support system, but that night I felt it to my marrow. After all the stress and exhaustion, I got to laugh, to be loved, to be a friend, and it was wondrous. I came home and I realized that I'd actually felt happy all evening, something that hasn't happened in far too long. I woke up the next morning and realized that I felt peaceful - I was near tears  from sheer relief. The endless tests are at last over, the not knowing, the out-of-control nature of cancer, has given way to A Plan. The only thing left is to call the scheduling folks, have the actual surgery, then come home and recover. Of course it won't be easy, and I'm sure there will be more fear involved at some point - after all, I still have cancer, and this is pretty major surgery - but I finally believe I can do it. I finally believe in my own strength again, in my ability to cope with this nightmare. I'll emerge with a new, cancer-free body, and knowledge that I BEAT CANCER, BITCHES!

Friday, January 6, 2012

Information Overload

Yesterday we went back to Birmingham - we were up about 5, took our time with breakfast and left the house around 7. We had lunch, then went to meet with Dr. Krontiras, the Surgical Oncologist at UAB's Kirkland Clinic.

We went in expecting to hear her - not really push, but maybe gently nudge - in the direction of a bilateral mastectomy (referred to as Mx after this), since that's what we heard when we were there two weeks ago. That's not what happened, however. She laid out two options that she said were nearly equal in terms of survival: lumpectomy/radiation/Tamoxifen is 92% survival rate, and mastectomy with or without reconstruction is 96%. However, survival rate is not what I wanted to hear; I wanted to know about recurrence rates. I didn't realize that she was discussing survival rather than recurrence, or I would have clarified. So I was really discouraged, because recurrence is a large part of what I'm using to make my decision. At that moment I told Andy that I felt like curling up in a ball in a corner somewhere and rocking - I wish I could just learn to expect that nothing in this journey goes like we expect; there is always going to be someone throwing a curveball at us.

I'll try to consolidate what we learned over the course of the (very long) day.

My options:

Lumpectomy alone has a roughly 30% recurrence rate within 5-10 years of DCIS itself, and the possibility of the recurrence being invasive. Radiation drops this to 15%, Tamoxifen decreases it further.

I learned that radiation does not only have the immediate skin burn issues that I thought; it can also affect the heart and lungs (and I am asthmatic, upping the lung risk issue), and there are other changes that can take years to appear, such as hardening of the radiated area, drawing in of the skin, and pain.

Known side effects of Tamoxifen (source: blood clots, strokes, uterine cancer, and cataracts. Other side effects of tamoxifen are similar to the symptoms of menopause. The most common side effects are hot flashes and vaginal discharge. Some women experience irregular menstrual periods, headaches, fatigue, nausea and/or vomiting, vaginal dryness or itching, irritation of the skin around the vagina, and skin rash. As with menopause, not all women who take tamoxifen have these symptoms.

In addition, the doctors on my oncology team are concerned because they believe my prior health issues point to an endocrine disorder, and are unsure how I will tolerate the Tamoxifen, especially as I am sensitive to many medications. If I try it and cannot take it, they will strongly advise against resuming my current progesterone and pregnenolone, which are working so well to keep my pain in check.

Should I choose this route, there will be monitoring at UAB every 3-6 months to check for recurrence. I know that the anxiety of monitoring will be hard to deal with (she understates, eyeing her bottles of Xanax and Lexapro wryly). If there is a recurrence, I will have to go with a mastectomy, and reconstruction will likely be difficult due to the skin damage caused by radiation - I will probably not be a candidate for the skin-sparing mastectomy at that point. There is also the possibility for further excision/lumpectomy if pathology shows that there were not clear margins at the time of surgery.

In my opinion, the basic pro to this route is the shorter surgery and recovery time, and the lack of psychological issues that tend to arise as a result of mastectomy.

Bilateral Mastectomy with reconstruction (yes, no reconstruction is an option, but not one I'm interested in)

I am a candidate for skin-sparing mastectomy, in which the outer shell of the breast, minus the nipple and areola, are left intact. The reconstruction option I would have, provided that my blood vessels are adequate, is the DIEP, (deep inferior epigastric perforator). In a nutshell, I get a tummy tuck and the skin, fat and blood vessels are used in the pocket left by the mastectomy. It's microsurgery, meaning it's very long and very involved, but has the best recovery time and there are no implants used.

The cons are largely obvious here: long involved surgery, possible complications, much longer healing time. I told the plastic surgeon that while I know it shouldn't be a consideration, I've wanted a tummy tuck since I realized that the skin from pregnancy was never going away. He said that no, it shouldn't be a consideration, but it's definitely a perk, and after all I've been through, I deserve a perk!

The pros are longer: no radiation, no Tamoxifen, no need for a change in the medication regimen that I know works. But biggest of all is that it drops the recurrence risk dramatically. There is no such thing as 100% risk-free even with a radical mastectomy, but this would be close enough for comfort. If I did have a recurrence, I would not look back at this moment and think "I didn't do everything I could have." Both the surgical oncologist and the plastic surgeon said that is not an insignificant thought process - many, many women go for the bilateral Mx for exactly that reason. This is an amazing forum thread that discusses my exact dilemma.

I realize that it may seem drastic to some who only see DCIS as "Stage 0" cancer. However, as you can see above there is so much more to breast cancer - it's incredibly complex and difficult to get a true handle on. As someone in the above-linked forum said, "Every recurrence of dcis can potentially be invasive. Then the whole process starts from square one." This, for me, is the deal-breaker: I cannot go through this again. The whole journey - from the day my surgeon looked me in the eye and told me I had cancer, to now - has changed me profoundly, in ways I'm still processing, and I know that the changes will continue for a long time. I was diagnosed with cancer two and a half months ago, and I still start in shock many times a day as I remember "Oh, my god. I have cancer." Cancer. The "c-word." The worst word I have ever heard directed at me.

There's a Facebook "slactivism" post that says something like "Stupid cancer. We all want a new car, a new phone. A person who has cancer only wants one thing... to survive. Put this on your wall in honor of someone who died of cancer, survived, or who is fighting against it now!"

I want more than to survive. I want to thrive, I want to see my beautiful son grow up. I want to grow old(er) with Andy, I want to love and laugh with my friends. And I want to make as sure as I can that no doctor ever looks me in the eye again and says "you have cancer."

Wednesday, January 4, 2012

Tomorrow is Make a Plan Day

As of today, all the info is in. I've had an MRI-guided core biopsy (that was done Dec. 29th) and it shows that the new area they found is nearly identical to the first. For you geeks like me who like to know such things: I have bilateral, grade 2 DCIS; estrogen and progesterone positive, solid and cribriform, with central necrosis. In layman's terms, it's not invasive at this point, but has some aggressive features. Tomorrow we head to UAB at the ass-crack of dawn to meet with my breast and plastic surgeons, ask questions and make plans.

I'm not screwing around here, you guys: I am completely and utterly off-my-nut terrified. The wait has been awful and I've said so many times that all I wanted was a plan already, but now that we're here I can't stop shaking. This is real: I have cancer. I have breast cancer, both breasts, no shit, really cancer. Some people are focused on it being "stage 0" (though that could change once the surgeons are in there). However, breast cancer is a freakishly complicated beast, and there are other factors, like the necrosis. We'll be asking the docs a ton of questions, but we (meaning Andy and I) are leaning toward nipple-sparing bilateral mastectomy with immediate DIEP reconstruction. If I can avoid radiation, and it drops my recurrence risk by the roughly 90% I believe it will, then I have to do this. I know myself; I'm a ruminant (though not of the bovine persuasion, thanks), and if I don't do everything I can and it should ever recur, I will eat myself alive with recriminations.

So, tomorrow we know. I guess there's already no turning back, but this appointment makes it SO DAMN REAL and I have no words for the fear.