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.

Simple Gratitude

To pit it simply, I am feeling supported, carried and loved. This week has felt different than the other last weeks of treatment. It's the last chemo, so there is the excitement surrounding the end of what has been the most difficult 3 months of my life. There is also the anxiety surrounding the end of chemo and diving into the unknown. Some of my side effects have gotten a little unnerving. My fingernails are separating from my nail beds. It's unsettling, but pretty common, and it will probably get worse but then it will get better. I am missing my work. Where there have been moments around the halfway mark of chemo that I questioned my ability to withstand anymore of it, I am certain now that I can do this. Mentally, I am already skipping a little ahead. I'm starting to practice gobs of visualization. I visualize a healthy body. I visualize my muscles becoming strong again. I visualize a body without pain, that I can move, lift weights. I visualize myself running. A body with no limitations. A cancer free and thriving body. visualize myself doing things as simple as smiling and laughing, my hair grown into a nice pixie cut, my boobs are soft and squishy again. I visualize a life with my wife of joy and laughter and community. I visualize the wealth and wisdom that I will acquire and I visualize giving/serving...financially and spiritually.

In that powerful visualization I have found the strength to take two long walks this week. At one point yesterday my body was ready to give out. Kayla and Linda wanted to go home and get the car and come back to get me but I refused. I made a joke "I just have to keep swimming." That that came out of my mouth at the moment that I was hobbling along stiff legged with snot running down my face cracked me up. We all giggled uncontrollably. I was able to make it home and I felt accomplished. Then last night I felt sick but the serotonin I had worked up from that walk had me giggling all evening. That felt amazing. But today I'm feeling it. I pushed myself and it was good, but it cost me my ability to work this morning. I felt hung over! I'm in this teetering in between two worlds of where I reside in my health realistically at the moment and where I believe myself to be headed.

My friends are organizing a fundraising event for me post chemo, pre reconstruction surgery. I am touched to the core that they are putting so much effort into this. Humbled. My coworkers donated a days earnings to me back at the beginning of chemo. One of them is going to assist me on a busy day next week, so that all my clients will be taken care of despite my current limitations. I was introduced to a new yoga instructor via a new dear friend of mine gifting me with a private session. This turned into a new beautiful situation where I am receiving healing by somatic counseling on a regular basis. I have received healing sands, candles, bracelets, sage, cards, books, food, scarves. There is so much love infused into all of these things. I can sit with them and feel the warmth of the well wishes. These are the things that keep me going. I have these insanely supportive and loving people in my life and I didn't even ask for them.

Like I said, I feel supported and carried and loved. Gratitude!

Rhythm

"Pierced by a keen sense of my own mortality, I was much more interested in discerning the small miracles embedded in each moment than I was in catching the 9:03 Midtown Direct to Penn Station. And there was a part of me that was disappointed when the time came to once again catch that city-bound train." From Losing a Comforting Ritual: Treatment
By DANA JENNINGS.......in regards to the "letdown" at the end of treatment.




It seems like a rhythm is beginning to develop in the process of treating and dealing/living with breast cancer. I think I am deciding to take a much more active part in the rhythm of my life. I have always been self observant; I was a broody teen with sexuality/identity/trust and abandonment issues. I recorded every thought, memory and musing with an obsessiveness. I used to imagine that I would use the art of language to serve. I was consciously aware of an ability to supply a source of insight to others. Perhaps the insight is a result of all of the paying attention. The self observation. The gift of expression. I think it's common for people like me to abandon an important artistic practice once they leave adolescence or early adulthood. But that need to create, to express never ceases. It's that need that can be awakened with practice or abandoned, bringing us at times struggle, at times peace. Hopefully a balance is met. I think that's what I mean about the rhythm. This cancer has reminded me that I need to pay attention.

I'm observing quite a bit right now, after playing the active passenger in the autopilot that can become your life in a tragic situation. I am a little goat, head down, horns charging at the bull. You can't be touchy feely all the time. You can't be in a constant state of meditation. At least not in my level of spirituality, which I am working on, but its also part of that rhythm. Sometimes you are a goat and the cancer is the bull. Sometimes you are the muse and sometimes you are the gatherer of inspiration. You can bend and sway with it, become more accepting of the different ways of existing. You began to recognize it when you pay attention. In my spiritual path I recognize this as Awareness.

This situation has granted me the precious gift of time with myself. I am allowed to cultivate, if nothing else, thoughts and inspiration about how to bide the rest if my time in this body. I want it to count. In what ways though? What is it that I'm here to do? My instinct is that it is to preserve the practice of observation and expression. Somehow that notion will guide me to better serve, love and honor. What that means after treatment is certainly not clear. Right now it means to do this. Share what I can honestly part with, infusing every word or action with an intention of honesty and light. Move in my body, connect with and keep loving it, nurturing it through its restricted state. Listen to music. It also means that I make lists. To do after cancer lists.


I began this entry yesterday. I was emotional. I do cry almost every day, if only for a fleeting moment. Perhaps a 30 second downpour during my 10 minute drive to work, a few minutes in the shower, an hour sprawling and bawling on my bed. I often find myself sitting in my driveway after I pull into it, bawling it out before I can go into my house. So, I cried and then I started to move. My body aches from the medication, the stiffness and numbness can be disabling. But there was music playing and I began to choreograph the ballet in my head. It was the cancer ballet. The movements were rigid and inched slowly toward a stretch. In my imagination we were dancers in a room, on a stage dancing out the rhythm of this disease. It is raw and beautiful. In my bed it was me, swaddled in my PJs, surrounded by my dogs, trembling with each stress of a movement, but finding ease and breath eventually delivered to my abandoned limbs. I recognized the music then as a source of inspiration. A way to connect with inspiration. Gratitude for the gift. I was compelled to pay attention.

Today has been nice. I had to go for my weekly blood work. It's usually the first time after a chemo treatment that I leave the house alone, or at all. It was cloudy but the sun came out when I got home. I sat with the garden. I talked to my Granny on the phone. She told me a joke. I appreciate that she always has a joke for me. I feel my spirits lifting. I'm moving into a new step. It's the rhythm. I want so desperately to keep paying attention.

These are Just some of the Things

Our wedding anniversary is in 15 days. No one is banking on us being able to do much, as I will be one day closer to my last round of chemo infusions, and I have gotten more sick with each one. Kayla's mom is here again, just like last year, to help. This time she's not making pies, helping sew finishing touches on our wedding clothes and preparing for family and friends to be here for our magical weekend. She's cleaning our house and maintaining our yard. She is touching things we haven't been able to reach for lack of time, money, energy. It's nice to have her here. It's comforting to feel like someone is taking care of Kayla. It hasn't been easy. For me, that's a given. As for Kayla, I've seen her coping right before my eyes. Like an extension of my brain and like clockwork she makes the world still go round. She works constantly. Sometimes I think I am disappearing. She often reminds me that I'm not. For me it takes a lot of reminding. This cancer is like quicksand. It's difficult to muddle through. I reckon I will find a way to keep afloat, and that I will reach a place of normalcy in my life. Maybe even joy. I hope so...

Because, I am suddenly consumed with worry about my prognosis. I have managed to get this far into this cancer journey without asking too many questions about my chances of survival or recurrence. When I asked my oncologist at our last appointment, "So, how do we know that all this worked?" He kind of chuckled and shook his head. "We will know in time. There aren't any blood tests that are going to show us. We just have to wait and see." Without getting into too much detail about the cancer itself, I will just say here that there are two characteristics of it that exist simultaneously and are also slightly opposing and that make my cancer slightly rare and more aggressive. I think it's something like 35% of breast cancers have both of these characteristics. This means that there are two different ways of looking at my survival rate, but those two percentages have to be considered in lieu of the other. I find it confusing so I realize that as a reader this might not make a lick of sense of it at all. Due to this sudden lack of certainty I feel a little trapped in this state of mind that is a whirlwind of what ifs, and why even bothers. I will find a way to tie all of this confusion into a neat little bow eventually. It's just that right now I'm in pain. I'm sick. Im sore. Im stiff. Im lonely. I hardly recognize my own face. Im scared. And there is a little taste of bitterness in my mouth.

Sometimes the effortlessness of existence that people crank out around us astonishes me. It's just that when Kayla and I managed to pull out our wedding from scratch last year, it symbolized the building of a foundation from what we were determined to build upon. We were hunting for an ease, a bite of that effortlessness. We spent so many of our efforts rapidly weaving our safety nets and our home into a happy nest. We built. But then the diagnosis. I just look around at the ease and effortlessness that I imagine in the lives around me and wonder if I will ever feel a part of that momentum. Like I'm not expecting to be denied or to lose or to die, even. These are the things I'm supposed to be learning not to fear. Loss, denial, death. These are just some of the things.

Pros

I am on round 2 of 6 chemo treatments. I am less terrified the second time around. But new things come up. There is so much to process at such a rapid rate.

Kayla and I are nearing our one year wedding anniversary. The idea of qualifying our relationship in such a way is what inspired me to start this blog. We were rookies when we met. We had under our belts failed attempts at intimacy and failed relationships, a poor standard of communication and little to no example of how it could be done. But we found in each other the need to prevail at this. We found a desire to learn, to grow, to bend and to fight full heartedly for something that was separate from ourselves. Commitment. Marriage. Fidelity. Family.

And here we are. Our marriage is almost a year old. And we have my cancer to contend with. And sometimes I feel like all I think about is the cancer. I think what happens is that we are both so busy kicking ass at kicking cancer in the ass that we forget to check in, to connect. We carry on with our lives, convincing ourselves and each other and the world around us that everything is going to be fine.

Only a few short months ago I felt so youthful. I was visualizing my pregnancy. The youthful thirty something with the baby bump and the glowing skin, practicing yoga with my long thick hair twisted into a bun, pedicured feet, contented smile...Kayla building furniture for the nursery, tool belt and tight T-shirt clad...

Now, I notice myself in conversations, reminding anyone who will listen that even though my last chemo treatment is in April, that is not the end of this little detour. I still have a year of herceptin, possibly five years of hormone blockers (or not), check ups, scans, loss of fertility, plastic tits, hot flashes, ovarian cancer screenings, the list goes on... Plus, I have a strong suspicion based on the way we survivors cling to one another in online forums, long after treatment is done, that this is a ride I will forever be on. I think I'm nervous that everyone without cancer's expectation of me, that my wife's expectation of me, is that after chemo, then after I get my new boobs, that everything is going to go back to "normal". But, what will I have lost? Can I even fathom that now? During treatment there is little room for mourning and loss. It is all I can do to keep my spirits high enough to fight. And I manage to be strong, to be positive, to be fearless. But in this trial there are hundreds of little ropes, and eventually I reach the end of each one...and the fears come tumbling out.

But she's scared too. And when we finally stop flexing and curtsying for the world for a moment, and talk to each other, I realize this. There are moments like these that I believe are born of our love, commitment and our determination to see each other through life, regardless of what that life looks like. So when I blubber into her shirt that I'm scared of her expectations, that I can't be sure that I have resolved myself the desire to carry our child, that I'm afraid I may still break down when this is over, and that I may need help, that I find it still so fucking difficult to relate to anyone without cancer, she doesn't seem disappointed. She reminds me that besides me, she is the person carrying the heaviest load from this. And that when this is all over she may need to break down too. And there are no expectations. Except for the one. That each of us would maintain the need and desire to be married with one another. I think you could call us pros.

Chemo Therapy

It is a daily reckoning. To be faced with your own mortality when you don't feel physically ill is one thing. To be faced with it when feeling physically more ill than you've ever imagined feeling is a new thing. A thing all it's own. Apart even from the reality of death, being forced intellectually to recognize that you will definitely die someday is interesting. Logistically, intellectually I know that Stage 1 Invasive Ductal Carcinoma isn't the thing that will kill me. It is only the thing that brought me here, to this uncomfortable place of reckoning. Chemo, on the other hand...whew. I'm on some serious drugs. Not your run of the mill glass of wine, not a little hit of grass here and there, and not the funny "hahahahahaha, I'm so HIGH on drugs because I just had surgery and I am sending hilarious text messages of my noobs to all of my friends, weeeeee!" type of drugs. No. these are serious fucking drugs. My mind is blown by the level of terrified I can manage to feel. I am devastated beyond any level of depression I have experienced, I am lonely, I am utterly sad and sick and tired. So I take whatever additional medication I need to in order to sit back and close my eyes and drift for a bit. And I sink into it. I sink into every thought and sensation that the present is willing to grant. I sink into the discomfort of the disparity. And that is when I realize that I am in the trenches now. I am in the clutches of the experience. I know that in time will come the glory of this fight. For now I drift.

Anterior to Life

"Love is anterior to life
Posterior to death,
Initial of creation, and
The exponent of Breath~Emily Dickinson

Today was a good day. I have come a long way in a short time. A cancer diagnosis does that to you. You find out you have it. Your life as you know it ends. You live in limbo. You begin to accept that you have cancer. you do so by waking up each morning feeling for a millisecond that you know your life, and then remembering that you now have cancer. And with each moment you gain the strength and the knowledge and hopefully the support to empower you to make the decisions to not only carry on and function with the knowledge of your having cancer, but finding the tools to get rid of it, or fight it, whichever your case may be. You learn that you will change, your life will change, your perspective will change, your partner may change, and a number of other things will most likely change. So, here I am 10 days post bilateral mastectomy and having one of the better days I have had since diagnosis. Despite the scars, my under construction, nipple free boobs look fantastic in clothing and they don't scare the shit out of me or make me cry when I see them naked in the mirror. In fact, I love to show them off. They don't yet feel like they belong to me. I wonder if they will ever feel "private" again. I still have drains which make it a total pain in the ass to get dressed. You have to hide the drains somehow, in my case today, duct tape on the inside of my cashmere cardigan best served me with a suitable disguise (thanks to the infamous Kayla who is a superhero freak of nature that has the ability to solve, with little to no resource,everything that needs solving). Today is the second day that I have actually bothered to wear real pants or put on mascara in over 10 days. It was because Kayla needed a haircut and I still cant do it and we desperately needed to leave the house. So we went to the shop. I love my new short haircut. My skin looks fantastic. I got some new lipstick and some fancy hand me down clothes from my bestie's fashionista mom. I've gained five lbs but I'm willing to ignore it for a minute and cut myself a break. I've been high on narcotics for over a week and I'm bound to get tired of the shit and start exercising one of these days. So overall I feel good. I feel cute. It was nice to see the girls and nice to see my chair, touch my stuff, hang out in my break-room, shop talk for a bit while Jen cut Kayla's hair. After her adorable haircut, we headed to one of our staples for dinner and our gals Shae and Jenny met us there. As always we had a good time and on our way home I spoke with my friend Mel about co hosting my birthday scarf party that we are holding on Sunday. She and her hubs are starting a party planning biz of sorts and I like to promote good people when I can so I asked them to help me with this little last minute project. As usual, as soon as we get home I check the Facebook. My grandma had, unbeknownst to her, unleashed a ripple of effects that would cause Kayla and I to end our evening crying in one another's arms. She commented on a photo that was taken of me by K a couple of months ago on a day date to our favorite Texas winery, William and Chris. On this particular day, we had just come up with the financial solution to how we were going to buy our sperm. We had found our donor. He was perfect. We were giddy with joy and excitement and every natural high feeling that comes along with standing at the brink of what you believe to be one if the biggest and most beautiful, important exciting abysses of joy in ones life. We were going to make a baby. We had a donor and we would be parents, probably by this time next year. Our morning conversation was giddy full,of laughter, high fives, and random jumping up and downs. We had started the date off at brunch, then a drive to our favorite spot in the hill country to pick up our wine club shipment and enjoy a glass. Next time we made this drive I would be the DD and we would pick up a couple of bottles to save until after the baby was born, talking about how we would build up our collection during the pregnancy instead of drinking our shipment with our usual unabashed enthusiasm within days of receiving them. We brought the dogs and flirted with a baby girl who was barely walking and talking and kept wobbling over to pat Marybelle and Bertie. As had become our regular routine with any activity we did, we talked about how these trips would be different for us once the baby was here. As young parents to be, we never went anywhere or did anything anymore without comparing the experience to how it would be once our little person was finally with us. When I look at this photo I see in my eyes how my heart felt that day. I had to harden myself to it, let it melt, and then give in. Just a glimpse into what could have been, what almost was. And with my sniffle, she instinctively moved in from the other room to hold me as I cried. And here we are, a few weeks shy of my first chemo treatment, out of full time work, celebrating the fact that my cancer has not spread and that there are drugs that will keep it from coming back, the same drugs that will prevent me from allowing a pregnancy. I have done a lot of processing on this front. To mourn the loss of motherhood, or at least the idea of physically carrying a child, had to happen quickly in order for me to have the oomph that was required to do what I needed to do to face the cancer treatment. For Kayla, it has been all about taking care of me, and taking over my roles in the household as well as her own, staying professionally available at work, upholding the health insurance, making the bacon, and generally keeping our little world turning, while Im kept busy making huge decisions about how to handle what's happening in my body. For her, it was about getting shit done so I could get well. Renovate the "would be"nursery into a yoga/healing room, turning the trashed out art studio into a family guest room, etc. etc. So, the funny thing about what happened tonight is that after I wiped my tears and blew my nose to go about my business, she found something light and funny for us to watch on TV. We decided on The New Normal, because I had heard it was cute and its a gay show so I'm down...It didn't occur to me that we were setting ourselves up for the little breakthrough that we so desperately needed to finish. In the pilot of the sitcom, one of the men in the gay relationship that wants to become a dad is recording a video for his future child to watch. He gets choked up as he is telling his unborn baby how desperately he or she is so wanted and already so very loved. My mouth dropped in that awkward smirk between a laugh and a cry and I look over to see my beautiful rock as she crumbles. We fall into each others arms and we cry for the first time together, for our baby that we won't yet get to meet. Our baby that will not come in 9 months from my womb, but in almost two years from hers, our baby that will not yet live in the nursery and will not yet celebrate its first Thanksgiving or Christmas next year. We cried finally, openly for what we feel somewhat robbed of.

But our baby is so very loved and wanted. Now more than when that photo was taken. And it's moms are so much more prepared. We are stronger for that baby. We are better for that baby. As for me, I am better because of this love. So grateful for this love. This is what we signed up for. I made the right choice. This is the First Day of My Life.

Fear

"Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart. Then they come together and fall apart again. It's just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.

When we think that something is going to bring us pleasure, we don't know what's really going to happen. When we think that something is going to give us misery, we don't know. Letting there be room for not knowing is the most important thing of all. We try to do what we think is going to help. But we don't know. We never know of we're going to fall flat or sit up tall. When there's a big disappointment we don't know if that's the end of the story. It may be just the beginning of a great adventure."~ Pema Chodron When Things Fall Apart

The truth is that I have  lived a large portion of my life in fear. Fear of not being taken seriously, not being smart enough, of being alone, not being good enough or successful enough, and most of all fear of getting sick. Terrified, in fact, of getting sick. The anxiety that has permeated my soul from this particular fear dates back to fairly early childhood, and grew stronger in early adulthood. Over the last year I had been facing this fear head on. I had been working to rationalize my irrational fears of getting sick, had worked on sifting through the root of the fear and what it is about getting sick that I'm actually afraid of. Actively i had been working through this, right up to the very morning of my diagnosis. And now I have cancer. And wheni got the phone call, I literally breathed a sigh of relief. In that instant I was cognitively aware that this fear was going to be addressed, once and for all, and that this was the beginning of freeing myself from it. Then there comes the myriad of emotions that I imagine anyone diagnosed with a dreadful disease experiences. There is the anger, the anxiety, the sadness, the depression. But the fear I was familiar with. The fear did not suddenly become more real. I have been practicing the fear for years, and it has always been real. Cripplingly so. So maybe what I am trying to say is that I am willing to embrace this time in my life because I see it as a real turning point for me. I can't know what this disease holds for me. I can speculate. I can do my best to control what I can control about the situation but I really just.can't.know.

The Bridge

Here is the ketchup. I was diagnosed with breast cancer on Monday. Three negative pregnancy tests and today my monthly visitor came. TMI? Such is my life right now. I am squabbling with myself over starting a new blog, the cancer blog, or keeping up with this blog since we are still, technically in our first year of marriage. The marriage and the cancer go hand in hand now. The cancer is part of the marriage. The cancer is in me. The cancer can go fuck itself. To say that I feel disconnected from the world is an understatement. I feel like I can't connect to anything. To live, to cope, is to go through the motions of my life pre cancer. I can do it well. It's called autopilot. I'm passing. Unfortunately there are decisions to be made, and while decisions like whether or not to lop off your boobies in exchange for something else entirely, or just scoop out part of one boob should be made under sound mind and calm spirit, I just don't know that that is a possibility. The decision could still be made for me, although it would be nice to have some control in the matter. Perhaps I jumped the gun when I went about chirping cheerfully that I knew that underneath all of it, without a shadow of a doubt I would come out on the other side of this cancer thing a better and more inspired person. An inspiring person. A fearless person. And by underneath it all I refer to the fear,the anxiety,the sadness,anger, the mourning of my unborn child, the mourning of a pregnancy I will never have,the mourning of my breasts as i know them,the mourning of my hair(that will grow back, i know), the changes that will take place inside of my body once chock full of chemicals and radiation and hormone blocking drugs with horrible side effects. Perhaps I put too much faith in the old adage "fake it till you make it". I am faking it most of the time. What i have become as a result is a vessel completely void of emotion, eerily calm, or synthetically optimistic, or a blubbering,irritable mess. I feel right now as if I'm about to lose myself. If I make the decision to have this surgery I will lose a part of myself. Forever. And I like that part of myself. In fact , I like all of myself. The self that I knew before cancer. This new self, I fear. I don't know her. I don't know this aggression. I don't know this pain. I don't know this fear or this resentment or this loss. I don't know how to bridge the gap between myself and the people around me that don't have cancer. I suppose that the body who is writing this entry is the bridge between pre cancer and post cancer me. I am not familiar with this body.

Last Leg

As I compose this, surprisingly composed as I do, I could have cancer. On the flip side,I could be 0 to 30 hours away from the biggest relief of my life. After a series of events that could turn out to be a blessing, non issues, or one complicated decision laced with painful and difficult decisions, I sit here on the last leg of my waiting period, succumbing to whatever lies directly ahead. You see, I could be 8 days pregnant and diagnosed with breast cancer. I am this close to receiving news that could mean a plethora of new realities for Kayla and me. From one end of the spectrum to the other I have been randomly putting my finger on the map of hypothetical new realities and analyzing what it would mean to be faced with each one. This is torturous, I know. It is what well meaning friends and family advise you to avoid. But it's how I do. And somehow it makes me feel more prepared for whatever I am about to go through. Here are the scenarios, whittled down to the basics, in order from most desirable to least desirable.
Scenario 1: I am pregnant. I do not have cancer.
Scenario 2: I am not pregnant. I do not have cancer.
Scenario 3: I am not pregnant. I have cancer.
Scenario 4: I am pregnant. I have cancer.