So Very Tired

I don't really have anything interesting to say. But I am having a bout of extreme frustration with my situation and I don't want to sit with it quite yet. I want to write about it first. I usually do things the other way around. This post may be more like a catch you up to date on how things are actually proceeding in my cancer journey/ bitch fest than anything else. Don't look for inspiration here. This is just me venting.

I've gone back to work full time. I feel great when I'm at work so know its a good thing for me. It's nice to have some what of an income again. But I often wonder if its still too much. Much like when I fist started chemo, I seem to have an allotted amount of energy and then I crash. I have lost all interest in cleaning my house, mainly because I don't have the energy for it. I used to love to nest. Now the chores that I used to love feel like chores and i find myself fantasizing about a house cleaning service. I'm also interviewing plastic surgeons to get second opinions regardimg my reconstruction debacle. That takes up a lot of time. There is also the research. What could have caused the infections? The fear of more infections, the fear of more surgeries, the fear of a less than desirable cosmetic outcome due to very delayed reconstruction. These are all thoughts that when I let my mind free to roam, plague me. I have reached out to my current surgeon to let him know what I'm doing and say that he isn't completely off the table to continue reconstruction, that I had been traumatized by what happened and I really needed to feel like i was getting all of the information that I could and making the best decision for my care. That relationship was difficult to consider parting with, I think it has a lot to do with him seeing me from the beginning. He saw me when I was who I was. Pre cancer treatment. The people I now meet see a bald chick with no breasts. a new beast for sure, but there was comfort in having someone who is in charge of restoring something cancer takes away see you as the person you once were. And we become attached to these people as we plow through these terrifying blows we are handed. He had been a beacon of hope for me. He was going to make me beautiful again. And he did, but things went wrong and now I'm left with this. I wanted to sit down and consult with him again possibly. It was a heartfelt email. I didn't want him to be blindsided and I wanted all the cards on the table. But he hasn't responded. So I'm a little annoyed about that.

Like I mentioned earlier, I will feel great for a few hours a day and then I crash. When I crash its so hard though. I feel I still have so much healing to do, and I worry that my plate is too full. I wonder if my efforts shouldn't be so focused on finding a new surgeon when I am still I'm cancer treatment, and there are other things that are paramount to my healthcare. For instance, I have to start getting screened for ovarian cancer every 6 months (it should have happened by now) but the OBGYN that I chose, because she takes a more holistic approach, is practically impossible to get a hold of. I had my initial consult with her where we discussed how we would screen and watch for tamoxifen side effects, and she would get my cancer records and proper test orders from my other doctors and get back to me. This was over two weeks ago. Still nothing. I wish I didn't feel a sense of urgency concerning reconstruction and would focus more on these things. Having the second of my implants removed eased some of the urgency since I hated wearing a prosthetic and I hated only having one boob. I also hated feeling torn about whether to stick with my surgeon or find a new one when I had one perfectly reconstructed breast and one deflated mass of skin. Now at least when I start over, it's a clean slate, if you don't count the scar tissue and all of the things that go along with my already being operated on four times in the last year. But there is a sense. I mean, in clothes I feel cute ish. I bought a padded bra. It covers up the mess underneath. I'm comfortable with the flat chest in clothes. But every time I undress I look down and I am reminded that I had cancer, am still fighting, and this is really happening. I lost my breasts. Psychologically there is a huge jump from waking up with expanders in serving as breast mounds and never having to see yourself flat...to going into a surgery that is supposed to be the easy one, to ending up with two chewed up looking pieces of flesh on your chest with deep red scars underlining them, at a time when things were expected to be wrapping up.


Then there is this awesome skin rash. It started a few days ago, on my belly. By this morning it was hip to hip and as I type it is crawling onto my back and my legs and up my mess of a chest, swarming around my port and creeping onto my shoulders. I spoke to both my oncologist and the nurse of the infectious disease doc on my case today. Oncologist wanted to wait to see what ID doc had to say, assuming he may take me off the diflucan. ID doc didn't bother to get back to me so I had to call his nurse at end of day. Oh yeah, she had spoken with him. He said he has never heard of any reaction like that to the drug and to take a Benadryl. If it doesn't go away or goes worse ill have to come in and see one of the other doctors since he will be on vacation. It could be the tamoxifen, my hormone blocking drug; it could be the diflucan, my antifungals drug. I've been on both for the same amount of time. I'm also having searing chest pains and shortness of breath. This could be a result of all of the surgeries. This could be a side effect of the tamoxifen. This could also mean that although I'm holding my shit together pretty fucking well, I'm pretty anxious about the situation. Faith or no faith. The shit gets old when it doesn't stop slinging.

I'm tired. I'm so very tired. That's the truth.

It's Not About the Tits

My PRC friend Renee posted a blog about how cancer isn't pretty not too long ago. Like many of us, she is squeamish about all the pink stuff...the way in our culture breast cancer awareness had become something of a disease tied into a pretty little package with a pretty little bow. Well meaning friends and family send us pink ribbons and pink mittens and pink pink pink galore. Some of us embrace it. Some of us loathe it. Some of us (like myself) could give two shits about all the pink stuff, but while not much caring for it, love the idea behind the gesture when receiving the color pink. Pink has never been one of my favorite colors anyhow. I prefer orange, green, and blue. In that order actually. But I digress...her blog made me reflect because it struck a cord in me at how we as survivors contribute to the notion that this is a pretty disease the general public believes it to be a survivable disease, something if we are diagnosed with, there is enough research and science to get us through unscathed. We get the prize of the "perfect new rack" if we so choose. The general public isn't so aware that breast cancer comes in gobs of shapes and sizes and severity. It affects us for life. It changes our bodies' chemistry, our hormones, our ability to heal, our daily dose of medicine, medical maintenance, our appearances and our relationships to the people and the world around us. And yes, it can actually kill us. I can't tell you how many times I could be quoted as saying "Well, at least those breast cancer survivors got a new pair...I mean, there has to be a silver lining, right?" That was pre diagnosis. I can say something similar to that now, to make people feel comfortable, to look on the bright side of things, but behind that reality is the physical cringe I get that the former me actually mouthed anything like that out loud. Because I know that I was clueless. I was uninformed. And I couldn't possibly have known what those women before me had gone through to get that perfect pair of plastic tits, and I had no fucking clue what I would have to endure to get mine. I don't fault anyone for thinking this way. I don't fault myself for having thought this way. I just reflect on what part we survivors play in making it all look so pretty. As for me, I went into treatment with a handful of things that I knew would happen, surrounded by a million zillion scenarios that might alter those few known realities, and a million zillion things that I had no clue about that might happen to my body, my mind, my place in this world, my life. The things I knew were that I would loose my breasts, opt for reconstruction via implants, hoping for no radiation as to keep the likelihood of reconstruction simple, that I would most definitely be on hormone blocking drugs for the rest of my childbearing years, most likely preventing me from ever conceiving or carrying a child of my own, and that I would probably go through chemo. I grabbed on to two things that I had control over, and that I could turn into "sunshine shit pie" (a term I coined a few years ago. I really don't use it enough). I decided that I would use the loss of my hair as opportunity to play dress up with turbans and long earrings. I adopted a new style, altered my make up regimen, and set out to take photos of myself almost every day (that I got dressed) to share and connect with people in my virtual world that I wasn't seeing on a regular basis. I knew that they wanted to see a brave face. Instinct tells us that the people who care for us, the ones who pray and hope and want us to continue to live and to be present in their lives, really want us to look good, to feel good, or to at least look like we're feeling good. It gives them peace of mind. But it made me feel good too. It made me feel good to be able to embrace this change in me. It made me feel brave to look brave. It was almost like putting on a costume. But then the costume becomes you. And I think that's what happens...

I wrote that blog entry intro several weeks ago, before I went in for the second stage of my reconstruction surgery. Originally, as I was wrote, I wanted to convey to that, this being an entry not only about how we as survivors play our roles in society's perception of our disease, but also of body image issues and the havoc this disease wreaks on a breast cancers survivors image and acceptance of herself. I wanted to shed light on the fact that, although it may seem like a silver lining that we get new boobs...I can't tell you how many people have said, "well at least you will have perfect tits for the rest of your life." Well meaning, of course...that we often go through so much to get here that its not actually all that "worth it" and it isn't actually all that important either. I wanted to point out that while there are several different options for reconstructing a breast these days,one of the most common for smaller ladies like myself is one called the expander to implant method. What happens is that we go into surgery for a mastectomy, where every ounce of breast tissue is scooped from inside our breasts like a pumpkin, that tissue is sliced up like a loaf of bread and biopsied for cancer cells, and a plastic expander (balloon with a valve) is put in as a replacement. It is placed under the pectoral muscle. The nipples are most often removed. Some are opting for nipple sparing mastectomies these days. I did not. During that initial surgery the expander is filled as much as can be with saline so that, if we are lucky, we wake up with mounds that resemble breasts. Over time, we go in to our plastic surgeons offices to have a needle stuck into the valve in our expanders and we are injected with saline to grow our boobs before our very eyes, to achieve the desired size, usually a bit larger than the size we want to end up with. The expansion process hurts and causes some tightness in the chest...it is stretching your skin and your pectoral muscle out to help create a pocket for your new "breast". When the time comes, depending on your treatment regimen, you will go in for phase two of your reconstruction surgery and get your expanders swapped out for implants. There is usually a third surgery where nipples are made, using tissue from another part of your body, or the twist and sew method, like I was planning to have done. During this third procedure, oftentimes fat grafting is done or other methods of perfecting the placement of the implant. Then months later, you can get the aureola tattooed on. The 3D portion of your nipple often doesn't stay that way and flattens over time. The tattoos have to be touched up. The implants often have to be replaced every 10 years or so. This is another maintenance issue. Yes, they look great in clothes. Yes, they are perky. Yes, they look pretty close to the real thing. But look close enough and you know they aren't the real thing. Look close enough and you know those nipples aren't real. And most of all, you lose every ounce of feeling you had in your breasts before this happened to you. No sensation. Nothing. And then there is the risk of infection or other complications due to reconstruction or placing a foreign body in your body. As cancer patients who have gone rigorous immune altering treatments, we are at larger risk for these complications already. Throw in radiation and most of the survivors I know just cross their fingers and hope for the best. Hope they don't lose their skin, or that their end result will be symmetrical enough in clothing, or that they will learn to live with the discomfort the implants cause in the tightened, usually burned and radiated skin.

I am revisiting and revising this blog entry today from a perspective I didn't expect to be coming from at this point in my journey. I have gone through stage 2 of my reconstruction. I got my expanders swapped out for implants. I have since lost both of my implants, undergoing three surgeries in a 5 week period, due to infection. I am seeing my unreconstructed and mangled breasts for the first time since my diagnosis, 8 months ago. It is one thing to make the decision to lose your breasts all together, and then wake up with something in their place that looks similar to a breast. It is one thing to go through treatment with expanders. They are not comfortable. I liken the feeling to wearing footballs and an underwire bra under your skin at all times. But you get used to them. And they look good in clothes. You still have a womanly shape. You cant lie in your stomach. They don't bounce. They don't give at all. They aren't fun to fondle. I didn't feel super sexy naked, but I liked the way I felt in clothing, and I embraced it as part of my journey, most of all embracing the fact that with expanders, I did not have to wear a bra! But then this happened. I have no choice but to go flat until further notice. And it's not like I'm just a flat chested woman, or a woman who from the get go opted out of reconstruction so she has a nice smooth flat surface of a chest. I wore expanders for 6 months and had my pectoral muscles stretched and my skin stretched to hold a 400cc implant on each side. And now they are not only flat, but indented. And wrinkled. Mangled. I can't wear a shirt that doesn't show the mess that lies underneath. I have to wear a bra. Thank god I found a pullover bralette with a little foam padding that makes me look like a normal flat chested woman under clothes. But God, does this put a damper on some things. My self image. My ability to feel sexy. More than anything I was ready to get my "groove" back and this whole 3 surgeries in 5 weeks thing has really put a damper on the romance. My friend told me the other day, "I know this kicked your spirit down...you don't use words like mangled. You have always been so positive about all of this" He was reminding me that the important thing really was that I was alive and that I was/am in theory, beating cancer. But we talked about how ironic it was that one of the most life threatening experiences that I have had since diagnosis was that first infection, one week after implant surgery, when my body was this close to going into septic shock and I had to have emergency surgery to remove it, and it had nothing to do with my having cancer. It was technically a cosmetic procedure... I was one breasted for three weeks before the other one came out, because cultures showed that there was still yeast in the implant.


I guess what I'm trying to touch on is that not only is cancer not pretty, even pink ribboned breast cancer in all it's popularity, but it can be downright ugly. It can kick the shit out of us. And it's not just the diagnosis. It's not just the treatment. It's the toll it can take on our bodies as women, when we already live in a society that values very highly two things.. Hair and breasts. It's not easy. It is fucking hard. And I'm doing my best to put my best out into the world. And you know what? I am learning again and again and again that its not about the boobs or the hair. It's not about making yourself look pretty for the people around you. That can be fun, it can be embraced.. It can even be a silver lining in this shit storm of a disease. But that isn't what this is all about. One, it is about surviving to tell the tale, or telling the tale for as long as you survive. These two wrinkled masses of flesh on my chest bring this disease to a whole new reality for me, as I was caught up on finishing it up and getting back to the old me. Guess what? That person no longer exists. I am realizing that this journey is not about me. It's not about my boobs. My hair. My looks. It's about the ability I have to touch someone's heart, to receive kindness, to express gratitude, and to find the Divine working in my life and the lives around me. At this stage I know this. I have no breasts. I have a voice. I have learned that my instinct is connected to a higher power and that I can listen to it if I make the time to connect. And that I need to continue to write. To share. Because this isn't about me. It's about something bigger.

"How is it Going?", you ask.

3 weeks and 2 days post op. My tissue expanders (hard plastic balloon boobs) were expanded 4 days ago. I will have another expansion in 3 days. My chemo port was installed 3 days ago. I am going to try and go back to work in 4 days. I have my first round of chemo in 10 days.

How do I feel?

Physically: Sore, slightly winded, fatigued, generally uncomfortable 100% of the time. My armpits feel sunburned. The tissue expanders are placed below my muscles so I occasionally have spasms. All of the time it feels like I have done an extreme chest work out. The sternum is tender to the touch, but getting less so as time goes on. The inside of my chest wall feels almost exactly like your skin feels a few days after sitting for a very large tattoo. For those of you reading that have never healed from a large tat, I always compare the feeling to the tattooed body part being dragged along pavement or gravel, full of open wounds and raw, tender skin. I have phantom nipple pain. I guess. When I am cold, it feels like my nipples are rock hard and tender. But i don't have nipples. Maybe its the plastic not warming to my body temperature. The port is still sore and I hope swollen, otherwise this sucker sticks out so far from my body that it appears I have a raging boil about 2 or 3 inches just below my left clavicle. When I stretch my arm a certain way, or roll my neck as I usually do to loosen up, it pulls the port, which is connected very deeply to one of my main arteries. The port gives me the heeby jeebies. Just as I was in the brink of weaning off the narcotics, I have to have one in the morning just to get moving. I am a side or stomach sleeper, but stomach sleeping is not an option, and to lie comfortably on my side I have to wear a tight sports bra or place a small pillow or my hand in between my "breasts" as the hard expanders seem to knock together. No thanks. It is almost impossible to snuggle with my partner. Intimacy demands creativity at this point and the physical discomfort as well as the mental discomfort doesn't so much lend itself to the creative.

Mentally: Frustrated. It frightens me that I get winded after a brisk walk, and when I have trouble catching my breath as I first get out of bed. I can't do the same activities I could do a month ago. Guilty. I feel guilty that my partner is carrying so much of the weight. I don't feel sexy or interested in sex. Sadness.That my gorgeous honey will get bored of what I have become and will be left unsatisfied for too long. Resolved. I feel prepared for Chemotherapy. I am getting better at the waiting game. I am slightly sedated to the fact that I will be chock full of medicine that will kill healthy cells in my body, and that I will remain unaware of what side effects will happen to me until they actually do...or not. Gratitude. Grateful that I am not in this alone. That my friends have become my family and they have proven to stand by me no matter what. That the tribe I have always longed for exists. I feel loved unconditionally and supported beyond measure. The peace that that feeling brings keeps me afloat. Always.

And I miss...oh my God do I miss.. Moving with abandon, that only those without foreign objects surgically inserted into ones body can. Wine. Sex. Feeling sexy, attractive. Running, jogging, hard core work outs. Caring what I see when I look in the mirror. My long red hair, my breasts...

And still, I would not trade any of the things that I whine about for the naïveté of my mind set pre cancer. I would not trade it because I know that with the weight of this burden comes the fruit of a new life. I am not afraid anymore and that alone is the most miraculous innovation of my life. I know that the lack of fear is worth all of the above, because all of the above is temporary. Or so they say.