Second Wedding

We got married again! Kayla and I recently went to San Francisco and Napa and we got married while we were there! In light of the marriage bans being lifted across the country, we thought it would be a good idea to tie the knot legally. By the time Texas is legally recognizing all marriages, we will already be set! In the meantime, we have federal benefits and will be able to file our taxes jointly. This is a huge deal for us as a couple. Fingers are crossed that the bans will be lifted in our state before we decide to expand our family. If that happens it would mean that the mother who doesn't carry the child will be listed on the birth certificate. If our marriage is not locally recognized by the time that happens, we will have to go through an adoption process for second parent adoption. 

Our vacation was lovely. We spent one day in San Francisco. We stayed in The Red Victorian in Haight Ashbury, where we stayed during our first vacation together six years ago. We revisited all of our favorite thrift shops and ate delicious food. 10 minutes before our cab was to pick us up, we jetted into a vintage shop next to the Red Vic and bought a new hat for me to wear for the ceremony. Kayla found a tie and a pocket square and in moments our outfits had transformed into something magical. Then we went to City Hall and got married. It was all very orderly and official seeming. We waited in lines to get our certificate squared away and then to meet our officiant. We were the first couple to get married at 3pm, our appointment time. In the meantime we chatted with our photographer and his girlfriend and had a photo shoot in between appointments. It was cool because we have been through the ceremony business before. I swore I wouldn't cry. Kayla teared up when the officiant said that we would comfort one another in times of hardship. When I get overly emotional I cry or laugh nervously, so when she cried I laughed. Then we both laughed. The photographer captured the moment where we were both laughing through tears. When Kayla tried to slip my ring (back on) my finger it was difficult because my hands were swollen. We had just taken our rings off and swiftly dropped them in Kayla's pocket before we held hands for the ceremony. We laughed again. We did our thing, got shooed away for the next 3pm couple, and posed for more photos (making out and marathoning in heels from side to side and top to bottom of City Hall). It was perfect. 

After a Whole Foods snack run we drove to Napa and spent the next few days lolling around the small town, eating food and tasting wine. We did manage to drive to one winery for a tour, and we saw Ani Difranco at the adorable Uptown Theater for Kayla's 31 birthday present. Napa, in a word, was delicious. Everything I ate melted in my mouth. If you haven't noticed already our vacations are largely centered around food. We had coffee in bed, snacks on the deck, sunned in the hammock and soaked in the tub every day. 

 

Now that we are back home I thought I would update the blog with some happy news and share some of the teaser photos that we have gotten back from our (second) wedding. 

Life after Cancer

Gosh, it's been a while. The call to update my blog has been gnawing at me for a while. It's been 6 months! To be fair I have three unfinished drafts saved that I will probably never post. At first my excuse was that I was adjusting to being finished with chemo, attempting to live life again. Too busy! But I was committed to my blog before cancer. I don't know. I just know that today it had to happen. I had to write. I'm going through something that I always knew would freak my shit if it ever happened. I have an ultrasound tomorrow to look at a strange area on what is left of my natural breast (the skin) My plastic surgeon found it in yesterday's appointment. And today I have committed the shameful torturous act of Internet research. I am rendered frazzled and frantic, having conversations with myself and everyone around me, in a desperate attempt to calm my nerves. I couldn't manage to make my grocery list and I walked around in circles for 15 minutes, trying to decide if I should take off my pants or get into bed fully clothed to write this blog. 

That's today.

If you are reading this, you might be curious about the happenings during my 6 month blog absence.  I will summarize. I started running after I lost my first reconstruction. It made me feel like a champion. I even wrote an inspirational blog post, reveling in my body's ability to heal itself, which I never published. I started dancing on Sundays. We went on an amazing vacation to Kauai. I ran on the beach! I interviewed plastic surgeons from San Antonio to Round Rock, chose one and made a huge decision about reconstruction. I cancelled my surgery. I rescheduled it. I started reconstruction over again. I sadly had to quit running to heal from surgery. That may have thrown me into a depression. I turned 35. On the Eve of my birthday I realized I had a little PTSD, something I arrogantly swore that I would never experience because I would deal with it all as it comes, staring down my demons one by one. Ha! I had my last herceptin infusion. I got my port taken out. I have been making plans with my wife to get married legally in California! (More on that later...yay!). I had another surgery (recon phase 2, take 2). My hair isn't growing back like I thought it would. I've lost most of my eyebrows and eyelashes after treatment was over and they haven't grown back in. I feel like I look like baby or an old man. I learned that these are things that may never be the same.

 And now I'm in the midst of my first "scare" after diagnosis/treatment. It is strange to have this feeling again; mind buzzing, humming anxiety. This insatiable hunger for cake and pizza against all rules of acute nervousness (I never lost my appetite for food, even during chemo...this girl likes to chow.) In short,this blog post is a way of controlling my meltdown. It's tough to admit that a year and a half after my diagnosis I am experiencing the same paralyzing fear that I did when I found that fateful lump. I wanted to move beyond fear. In the throes of chemotherapy I had this sense of having the strength to endure anything after what I was going through, because it was so hard. But sitting here thinking about my upcoming ultrasound, I am struck by the relativity of these situations. It's all fucking scary. It never gets easier.  Surgeries, hair loss, permanent bodily changes, friends with recurrences, fears of  recurrence..THIS IS life "after cancer." Like my survivor sister told me this afternoon..."I feel sad for you because you're realizing now that this is never over or behind us." She said this to me after I said the same thing to Kayla over breakfast in so many words.  All the while we have been waiting for it to come to a close of some kind. 

I'm starving.

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.

Fraidy Cat

I used to be afraid of roller coasters. Horses. 3 wheelers. Something of a "fraidy" cat.

A lot of talk has been had about how cancer changes a person. There is the really obvious seize the moment type stuff. But personally I'm also less worried about the general outcome of things. Where will we will be in ten years? Where will we be in five? Who knows. That's the general recognition, that we don't know what tomorrow holds or how much time we have left. We don't really know, so how much effort do we really want to spend on things that are less important? And how do we gage the importance of the thing? My entire perspective on life has changed. I met with some cancer survivors for lunch yesterday. We talked about how it's different to say that we feel good today, because we may not have the energy level that we once had, but we know what it's like to feel like total shit so it's all relative, right? After cancer treatment it could take 6 months. It could take a year to recover from the toll that cancer drugs take on your body. It could NEVER be what it once was. My oncologist told me, when I inquired about my still below normal white blood count, that sometimes our counts never return to normal. There isn't anything non synthetic that we can do to raise them (the answer to my next question..."Well, what can I do to raise them?") There are studies that show that after cancer treatment our bodies age 10 years. But that doesn't matter so much. It feels good to feel good. Our bodies have been through so much trauma. We have carried a burden so heavy in it's load that even though it leaves us tired, once the struggle of the big fight ceases, the load may have deemed burdensome before cancer seems somewhat more manageable. There becomes an ease to life, a magnificent lightness amidst the tragedy that is so prevalent, and so necessary, for there to exist balance in our world. We decide how much our fatigue and our forever altered bodies will affect our livelihood and our qualities of life. Perhaps we just fuse the energy that we are left with into different things...one peer described that she was a very self disciplined person before, and still is, but that meeting periodically,on a regular basis with other cowgirls reminds her that its okay if the laundry doesn't get done on Wednesday, or if the to do list doesn't get finished by the weekends end. "Weekends are for relaxing", she said". I made a new survivor friend recently that has a very high stress job and she says going back to work after cancer treatment and a series of surgeries feels different. She has a different approach to her work stress. I have a friend whom I've only met online. Her existence has made me a braver person. She is a fellow cowgirl and she is living with stage 4 metastatic breast cancer. Her cancer has spread to her brain and she has had 3 brain surgeries in 8 months. I know her through her blog, through social networking I've been able to see her paintings, her photos, and read her words. She blows my mind. I remember the post where she announced that they had found what might be a second brain tumor and she would have surgery again. She was at a restaurant, drinking a beer with her husband. She was scared shitless. She said so in her blogs. She was asking for support and prayers. She begged her friends not to let her isolate like she did the last time. I could relate to that plea. I was so anti social during my treatments. I could barely look the person in the eye, if I dared let them into my house to visit. But she was being so brave. Just thinking about what her experience stirred in me brings me to tears as I type this. She had surgery shortly after, and it was a tumor. They got as much as they could. A few days later, she posted photos of her surrounded by her loving women friends, and then a self portrait of her, beaming at herself in the mirror. I am sobbing now. That beaming smile came to me at a time when I was at one of my darkest places. I was terrified that I would always feel so bad, that I would never feel a load lighter than the boulders I carried. And she was beaming, a few days after brain surgery. This is a woman who only months before had to learn to walk again, and went into a second surgery not knowing if she would have to do that all over again. Today she is posting online asking of anyone has a recumbent bike that she can borrow so she can ride in the Texas Mamma Jamma Ride, benefitting the BCRC this year. She can't ride a regular bike because she has balance issues, but she's getting out there anyway. Seriously? What the hell. Lets all take a moment of silence and let go of the thing that pissed you off today. I, for one, considered myself a person that thrives on organization and control. I'm not abandoning practical organizational skills, but I have abandoned the need to control others, and let go of situations that are simply out of my control. I don't need to bother myself with what everyone else is doing. I don't need to mama hen everyone. That is a quality that I have had that has been detrimental to my own development and quality of life in the past. I will no longer fuse my energy into that that which does not need my input. Nor do I need to worry about how things get done that are none of my business. Cancer has freed me of this and many other "stories" that I have believed about myself that are no longer true. In so many words, we all agree, as survivors of a traumatic life altering diagnosis and various experiences related to that diagnosis, we share a similar approach to life. It is really easier to let the small things go. Another thing a lot of my breast cancer sisters have in common is a new appetite for life. We want to socialize, especially with one another. But mostly we want to hug and squeeze the people that we love. We want to express our feelings to the people in our lives every chance we get. We have a special insight into the alternative to living that urges us to show up for life. That doesn't mean the same thing for everyone, but it carries a similar weight in each of our lives. Sometimes, for me, it is just savoring the time I spend alone with myself, allowing myself to enjoy the music, take a drive, smell the flowers, pet the kitties, snuggle the doggies, look at my fashion mags, read a book, connect with a friend on the phone...blog....without letting my mind wander and worry about what's for dinner, the bills on the fridge, the to do list in my bag, whether or not I will get fat or break out with acne on tamoxifen or if I will ever do a handstand, when will I have children, will I be a terrible mother, will my pets like the house sitter when we go on vacation, and what if my cat tries to run away?!



So, I guess what I'm trying to say is that I used to be afraid of roller coasters. I used to be terrified to drive on the highway. I used to lie in bed at night wondering when I would die, when my parents would die, when my lover would die...depressing right? Terrified of that moment, frozen by it so that it kept me from living. Something is changing in me. I'm not saying I'm throwing caution to the wind, that I have a death wish, or that I might want to skydive... But I will say that I'm less afraid of what might happen tomorrow. I'm more driven to go see the things that I need to see,pet the horses, ride the helicopters, the airplanes, the three wheelers, the proverbial roller coasters of life. I'm more open to the vast possibilities of tomorrow, rather than limit my possibilities to what I "think" I have planned.

How does this tie into my marriage? At lunch we talked about how our new outlooks, I prefer the word "awakenings", translate into our relationships with our partners. Many of my peers have moved out of old patterns and their partners may not have arrived at the same place, or aren't getting there at the same time. A balance needs to be met. And that's OK. These women have changed. In so many ways we are not the same wives we were to our partners when we started this journey. I have been thinking a lot about this actually. From the beginning of diagnosis, I was very aware that this thing was going to rock me. It would rock us as a couple too, in one way or another. We had just signed up for "till death do us part", and the death part was looming in such a way that was a bit...er...uncomfortable, 7 months into that very serious commitment. Here we would be tested. I was nervous because I had the insight to know that This Thing would break me open and it might be ugly and painful before it was beautiful and it may not bade well for our marriage. I had the insight to know I would be given the gift of being woken UP in some way. I knew that she would stand by me. I never doubted that she would be by my side. I never doubted that because when we grasped hands right before we walked down that aisle together in front of god and everyone, I felt in my gut that she was truly the one that could withstand to be my partner for life. I had an inkling that one of the most integral components of a successful marriage was to be able to bend and sway, and I believed us both to be willing to do what it takes. So when I was diagnosed I knew that we could "do this thing" because we "get shit done" but I didn't know what struggles would emerge in our relationship to each other because of it. But I had to let that go. I had to trust that she would do right by her and I would do right by me and we would do right by one another because that's who we are at the core. I had to put a trust in her that I never imagined I would need to put into practice so dramatically that soon into our marriage. I had to let go. I had to stop believing that she needed me to meet every need and take care of her in every possible avenue of life that I had the power to care for her.

So, now I feel the need to express this very very deep to the core guttural gratitude that I have this person in my life that not only can stand beside me and hold my hand through the shitty stuff, but that can bend and sway as I grow. That she had the intuition to let me hide away when I needed it and celebrate my new life as I gained it. I know that my diagnosis and my experience has jilted her to the core. Not in the same way as it has me, and that's okay (letting go of that mama hen stuff...). But in a way that we can look at one another today and realize that we both have changed, we both have grown. We have shed. We have both gained perspective from this experience. And we are steadfast in our love and commitment. In many ways that means the same things that it did before. But in many new exciting ways I am recognizing a new stride that we are learning the steps to. We are opening up to new possibilities for our lives as a result of what cancer has given each of us. There is a new dynamic in the making here. It's becoming more clear to me that my partner has also acquired an appreciation for the unknowns in life. We will still make plans. But we will remain open to the vast possibilities of life. Together.

The Moment is Now

Tonight was supposed to be the fundraiser party thrown by some of my best friends, our wedding officiant, hosted by my favorite "lady performer"/dear dear beautiful man friend, with musical performances by two of my beloved talented friends. We had a lot of rain this afternoon, and when it rains like that here in ATX we have flash flood warnings, bad traffic, bad drivers, and usually a couple of accidents.An executive decision was made to postpone the party since drag queens, sound equipment, and 60+ people in someone's back yard don't mix with puddles, mud and a chance of more rain. I was bummed to postpone because my mom came in yesterday to join the party, and even as I was driving in gridlocked I-35 traffic to my PT appointment this afternoon, I had a gut feeling that this party was going to turn out magical, despite the weather...but it's okay. Kayla, my mom and I put on our PJs, ordered pizza and watched Thor. I signed up for a Pilates class and played on Pinterest. I found a yoga blog and practiced "alternative nostril breathing"/pranayama, drank green tea, and finally got the itch to blog again, even if only to serve as a substitute for the social interaction that I feel like I was gearing up for tonight. It's good though. I'm paying attention.

I haven't blogged in a while. A lot can happen in a short amount of time. I was diagnosed with cancer only 6 months ago and so much has changed. I finished chemo one month and 3 days ago and so much has changed. Kayla and I celebrated our one year wedding anniversary. This blog was intended to be a reflection of our marriage. Our lives look very different than they did a year ago, even if only to us. But our marriage has proven to be rock solid. This is what we signed up for..in sickness and in health. But I digress. I wanted this to be a quick update on the progress that has been made, and shed a little light on my experience this far as a cancer survivor, which is now a major player in the reflections expressed in this blog.

I've talked a lot about the spiritual and mental experience of being diagnosed and going through a mastectomy and 6 rounds of chemo. There are physical challenges too. Now that I am starting to move around a little more in the world, spending less time in private contemplation and coping with illness, I am experiencing the bafflement of the physical complications/challenges imposed on the body of someone going through cancer treatment. Im speaking of a physical experience beyond what the eye can see, beyond loss of hair and breasts. a quick rundown, if you will:

My lips cracked open the first few days of the first few treatments. My nose bled every day for about a week after each one. My skin dried out. About halfway through my treatments I started feeling like my limbs were "sprained". This is a hard thing to describe, as it was a foreign feeling to me. I started noticing that my face looked puffy in photographs. (I took a lot of selfies...compelled to record this physical state that I am so awestruck by). And then despite my efforts to excercise, I began to lose my endurance. Quickly. Very quickly then I started noticing that I couldn't walk from my parked car to the door of the salon I work at without falling utterly short of breath, calves searing with pain. And after I thought I had experienced the "fatigue" that "they" speak of, I realized that there is another tier to that word. There is a state where you can get out of bed, but only if you have a need so great as to use the bathroom and you can't hold it any longer and you aren't wearing diapers. There is a state of being where you can walk from your bedroom to the backyard, but with leaded feet and hunched shoulders, only to find yourself stranded in the middle of the garden in the nearest chair for god knows how long because you can't find it in you to go back inside, much less take one more step...and you can ask yourself how in the hell you got like this but you know it's the chemo and that's when the mental shit comes in...but that's not what we're reflecting on here. And then there came the muscle soreness and the twitching. The twitching started in my thumb, and then my eye. Before long my stomach joined in. I would be lying on the couch and I would see something like a mini ocean wave ripple across my torso. And then my legs. Vibrating muscles everywhere. By the end all over my body. I read it is due to toxic levels of drugs. I continued to do yoga,seated meditation, as often as I was able to get out of bed or off the couch, and I continued to get more and more stiff and sore. By the end I couldn't touch my toes. My hamstrings became gridlocked. Every muscle in my body felt like it just had its first ever trip to the gym yesterday, but all the time, and with no relief from stretching. My fingers and the bottom of my feet went numb from neuropathy. My fingernails separated from the nail beds and threatened to fall off. Pain pills, anxiety pills, these are what we turn to when our bodies are riddled with poison, despite the foremost efforts to stay clean, eat clean, live clean. Comfort food is what you turn to when you can't taste a thing except the chemo and the thought of steamed vegetables makes your stomach churn and raw foods are out because they may contain bacteria and your body can't handle that risk because your immune system is shot. But steroids make you freaking hungry as hell. All bets became off...anything just to get through the day, the hour, the minute. Then the night before my last cycle I noticed that my ankles were swollen. Like sausages. The next day, still swollen. And over the next few weeks my entire body swelled up like a balloon. By the end of chemo I weighed 20 lbs more than I did at the start. My body was like a strangers. I felt as if I had aged 40 years in 4 months. My walk was now a shuffle. And that was scary as shit. There was no clear answer. Two weeks of RX water pills and a trip to the ER to have tests run. I came home with a free pair of support stockings and the same answer I had before. Kidney and heart function showed to be intact, and no blood clots to be found, but the body was still swelling. Keep taking the Lasix, hope for the best. My anxiety and desperation for good health had me running around seeking answers, obsessively recording my blood pressure, heart rate, and studying 4 months of lab results. It reminds me of myself pre diagnosis, but on crack, desperate to find the culprit. The physical state of my body had me in shambles. My mind is free of the chemo fog and heavy medications and I'm reeling. I'm lamenting the abilities and the strength that I took for granted once. I had this capable and svelte body that I could push to higher limits, fill to the brim with health and excercise, but did I do that enough? Did I love it enough? Simply appreciate it every damn second? And now I was a stranger to this body, I was broken, scared. Surreal. I visited my somatic counselor a couple of weeks ago and she reminded me that my body has been working so hard for me. It has been doing its job! It has been functioning! While I was getting frustrated and blaming my body for not being able to walk, run, play, stretch, it was churning and whizzing itself into a frenzy to keep me ALIVE. I should be thanking it. In any way that I can. So, my focus of late has been to move that frenzied thought process into one of gratitude and patience. I realize that stripped of all the mumbo jumbo of it all, my body as a whole is doing its best to recover from severe trauma and inflammation. That in mind, I am gaining so much now. Im detoxing. Its now a daily practice to rebuild. Keep faith. Have patience. Practice gratitude. When I try and sit on my knees or cross my legs or reach my back to put lotion on, I remind myself to breathe and that it took 4 months to arrive at this state. It will take some time to move out of it. And I love this body. I am reborn every day that I wake up to draw new breath.

I am ecstatic to be alive tonight. I am grateful for this life. Tonight is magical. The party will be magical, when it happens. I can't say that I can't wait because I can. The moment is now. The moment is now.

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.

And with cancer comes...

One thing that this diagnosis has taught me is how limited our control is over life's momentum. Spontaneity has never been much of a thing for me. I like to plan things. I thrive on routine and I bask in an orderly and well arranged nest. I am always on time. I am not a fan of clutter. But, I am learning to operate under a new system of control. I am learning as I go what works for my body during treatment, how much I need to rest, how much I need to meditate, how much social interaction I need, how much I can handle and how far I can walk or ride my stationary excercise bike before I am winded and need to take a break. I am learning my body's new boundaries, and in learning them I am learning to accept and love it as it is. I have a body in transition. I literally live in a physical body of reconstruction. We all do. My transition is just more tactile than some. And it wasn't all voluntary. A large part of my personal spiritual practice is maintaining a strong mind/body connection. When I have felt the least alive is when I have suffered a drift of connection to my body. I can't tell you how many times I have gone to see my therapist in utter mental disarray, convinced I should be immediately medicated, to be gently reminded to sit and breathe, ask myself where in my body the pain or confusion is felt, and go there, breathe into it...sit in it...and possibly move with it. As a child I learned to dance and losing myself to the rhythm and the counts and the music and the repetition of rehearsal was therapy for me. Closing my eyes and chanting in a room of yogis is therapy for me too. So a common theme in my reckoning with breast cancer is working to overcome the challenges of a rapidly changing, unpredictable body, a body that I felt had somehow misled me, or turned against me. I thought I was on such intimate terms...but... I have to make a daily practice of trying to connect spiritually to a higher healing power, trying to connect with the depth of healing powers in the well of my deepest self, when at times, especially in the beginning of diagnosis, I couldn't look at myself in the mirror. I couldn't look myself in the eye. I couldn't take my shirt off in front of my wife. I couldn't fix my hair. I struggled for a grasp of how connection to this body could be possible at the same time that I was learning at a rapid rate what was about to transpire for me physically. I wrestled with avoidance but avoiding conflict of any kind is not conducive to my well being. So I started with confrontation. I needed to have a log of what was happening to me. If I log the pain, the suffering, breathe and move through it, like grinding a sore tooth until I can taste the blood, I will eventually find sense in the path that I chose. Eventually. Kayla is helping me log the physical transformation through photography. The images allow me to process what is happening in a new level. There have been moments of paralysis, moments of searing heartbreak. Then there are those sweet moments of peaceful surrender, when the stillness of the present pillows me with the realization that I am ALIVE, and I am finding an ease of grace through each phase of my physical appearance, navigating my way through this trial that tolls me from the inside out. There were many things that I have feared, many things that I desperately wanted to change, or feared I could never confront, that I am beginning to move through now. The change is inevitable. The ability to dig into and connect to the inevitability of it became more profound and more powerful under the knife of cancer.

My wife is awesome. That is all.

So we wrapped our arms around each other
Trying to shove ourselves back together
We were making love
Making love
-"Origin of Love" by Hedwig and the Angry Inch

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.

Free Agent: Guardian Guide

I've been thinking a lot about a woman I once knew. I was a little girl, and she was a woman. And then I was a young woman. And she was dying.

There is much to be said about Sabrina, so much that even as a writer I feel I couldn't properly express her magnitude. You would have had to know her. The important thing to share here though, is that she has been gone for almost 5 years and I haven't seen her in over 8. But I have recognized growth in my life, throughout out my adulthood, seeded from pearls that she sometimes temperamentally shared, years before. Once, I was pissed off about the war that the US waged on Iraq and I paced my living room floor in my hippie apartment in Bryan Texas, raging over the landline to her as she listened patiently. She let me ramble on and on and on. I was distraught and passionate and hell bent on changing the world, or at least the minds of other people. And then she quietly spoke. She warned me about being angry. "This isn't going to get you anywhere. Start with yourself. Love the people around you. If you want to make a change, the bigger picture change starts within you..." I was pissed at her that day. I thought she didn't understand. I thought she was high and acting like a hippie dippy freak. I was 22 years old. The idea that she planted in my noggin that day has manifested itself as the number one motto that by now I live my life. I have practiced it and it has worked. This practice has birthed change that is tangible.

Before that she was like an aunt or a god mother to me. The seedy, crude, big, bold, sexy, gut laughing, pot smoking spiritual seeking crystal/rock hugging, incense burning, husky voiced, fearless, unapologetic, admittedly vulnerable, insatiably frustrating, grossly honest and raw and self exposed, crazy god damned godmother.

She is with me a lot since my cancer diagnosis. But now I inadvertently mutter phrases of hers that I have never said myself. Sometimes when I drive myself to a cancer appointment in my car alone, I feel like she is sitting in my passenger seat, sharing raw wisdom of mortality and grace, the fantasy manifesting itself in my body with tears that spring from deep inside my throat. Or laughter. Laughter. Laughter. Sometimes I see her in someone else. A glint in the eye, a toss of the head, a belly laugh, body type, manner of speaking. She is like an invisible laughing buddha angel, occasionally poking me in the ribs. She pokes at me randomly, reminding me that I was not put on this planet to be a pleaser of people, but an inspiration, and possibly a guide. She reminds me to say "fuck it all" every now and then. She reminds me that bands of women can be your best friends, and sometimes your truest sense of familial love. She reminds me that I'm going to die someday, but that it isn't today, and while I am here I should have a hell of a good time and serve others by serving that love and compassion that I have within me. She reminds me that I have a gift. She knew it because she had it too.

It is no surprise that she visited me today, during my first chemo session, in the form of the financial counselor at TX Oncology. There was something in the way she flicked her head when she spoke quickly and laughed, her body type, skin tone, bone structure. She spoke to us like we were familiar, administered her speech and then with a hastiness that would have been awkward from anyone with an ounce of self consciousness said in that husky voice, "You are beautiful." Randomly, spoken like a fact. And walked away.

I found the last letter she wrote to me before she died. I would like to share a few passages here, in the name of keeping her spirit alive and to remind myself that there is so much magic in this life. "It's going on late afternoon now. I'm dressed in my favorite "holy" jeans and my black velvet bra and black velvet panties. I feel good! Black top cut kinda low but not too much, just enough to enjoy to power of the BOOBS, oh yes yes YES. I was just full of myself ... and enjoyed the whole day. Will I actually do that everyday? I will try anyway. SAY YES TO LIFE!! I just hate limitations.....I miss you but you always feel near. Be good to yourself and of course, to others...Love and Peace and Harmony and Passion, Me"

"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.

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.

Woman Centric Life

The greatest universally understood goal in trying to achieve conception when consciously baby planning is to relax and eliminate stress. So silly because the conscious planning in itself is anxiety fructifying. That said I believe that I have been residing in a pretty awesome place since shortly after my last blog entry. The entry itself brought support via social media that was quite sweet and appreciated. Two women in particular that I hardly knew reached out and resulted in my inspiration to start a private lesbian baby planning support group on Facebook! The three of us planning to carry, along with our wives can now swap stories, share blogs, books, and offer inspiration and support. It has been a really cool thing thus far, and I doubt I would have gotten the idea if I hadn't been faced with the news of the dreaded high FSH levels. Its refreshing to find other couples with similar goals and lifestyles, also lesbians, to share in the journey of becoming parents, the not so old fashioned and sometimes incredibly overwhelming and confusing way. Then there are my precious jewels, the ladies with which we have developed close relationships with over the last few years, coming together for an uplifting impromptu dinner party last week. It was that night that I felt my anxiety truly begin to melt away. There is such great power in the support you gain from the people that know you and love you best, and unconditionally. It is no secret that we lead a female centric life, so it is actually no surprise to me that this is the place my soul has dug it's heels into, in preparation for our pregnancy attempts. I revel in my relationship with my amazing partner, in our cuddly monkeys and in the joy that these kick ass women bring to our lives. I am doing yoga, getting acupuncture treatments, taking herbs, and treating my body well. All of the above turns out to be my recipe for stress relief. I am finding myself observing throughout the days leading up to our first attempt, the peacefulness and stillness in my heart. It's all good.