New year

I'm at a new years party, and I probably shouldn't have come. I feel like Debby downer.  My stomach hurts and they are playing Beyonce singing "I was here". I'm just working very hard not to burst into tears out throw up. 

Lists

Went to see Les Miserables. It was wonderful. Would go to see it again.

I've started making lists in my head. I want to live and fight this and grow old with my husband. I want to be his forever. But I also know my luck has not been good, and the 5 year survival rates are not good... so I've done what I always do when faced with a difficult task... started lists. Lists of things I need to do.

Need to make a will
Need to get the house title in both names
Need to make living will
Need to get medical power of attorney set up
Need to get stuff set up with the businesses so if something happens, my husband can continue with his work
Need to list all the passwords for credit cards, etc so he can pay the bills

Need to fight this
Need to work out regularly, especially with weights, to help combat osteoporosis
Need to get my daily calcium
Need to take my medicine
Need to take a vitamin
Need to find something to do for the five hours I'm getting pumped with poison
Need to get my hair cut (well, shaved off)
Need to get a wig
Need to figure out how I'm going to teach and work in the midst of all this
Need to contact the HR person to figure out sick leave
Need to let principal know I still need a sub

Need to find a counselor
Need to stop crying
Need to be strong
Need to stop getting upset with people
Need to enjoy every minute I have left, if it's six months or sixty years...

Need to say I love you to those that count as often as possible

Want to get better at playing my violin
Want to see Europe again - and the mountains and hills of the Black Forest
Want to see the west coast
Want to see the temperate rain forest and giant redwood trees
Want to take husband to Tangier Island
Want to go back to Prince Edward Island
Want to see Boston and Philadelphia and the historical sites
Want to trust in God again... want to believe in God again
Want to raise a child
Want to go to a really fancy event again, and wear a formal gown
Want my husband's business to take off, so I don't have to worry about him financially
Want to make a difference in my students' lives
Want to be remembered for something good
Never want to hear the word cancer again

Merry Christmas!

Merry Christmas one and all! I've had an odd mix of feelings this holiday. I wobbled between macabre thoughts and feeling happy and contented. I might write more later - I have thoughts swirling in my head, but I can't get anything coherent together.

Where are you Christmas?

I sang this a couple years at one of our church services. I feel it's quite appropriate for me this year. We have this terrible tragedy at a school, which has my mind churning over what would happen in my school. I know my classroom is the first anyone can get to from the front door - so I always try to be aware of what I could do for my students. Then the cancer is hanging over my head, making me feel somewhat selfish. I'm only vaguely aware Christmas is on the horizon because there is a giant tree sitting in front of me, with bunches of gifts under neath, and today a ton of gifts were delivered from my coworkers at school. It was really uplifting and overwhelming how many thought of me.

Instead of counting down to Christmas with butterflies to find out what those gifts are under the tree, I'm counting down to this Friday, when we go back and find out the pathology results. I get to find out what my chances of survival are, knowing that even 95% chances in my favor can be defeated (since that's what I've managed to do so far)... I get to hear about what's going to be in store for me with the chemo and radiation. I've already decided right after the doctor, I'm going to call and make my hair appointment to have all the hair cut and then I can donate to locks of love. Maybe I should die the remaining hair some speckled green and red creation, to feel more Christmas-like? But I'm not actually going to get it cut off until after Christmas, just so the pictures don't have me looking horrible - my fat face really doesn't look good in short hair, but I'm going to make the best of it.

Meanwhile, under the column of minor annoyances - iTunes just updated and it's AWFUL!! I hate the new layout and how things are navigated. It's the most retarded thing I've ever seen! UGH!! Why the fuck do companies have to radically update shit that people like? Just some additional things to grumble about at five in the morning when I can't sleep.

Week Update

I got home last Sunday night, so I've been home a week now. The time has passed in sort of a haze. There were many times I meant to make a post, but just didn't for some reason or another. Sometimes it's just me falling asleep because my energy is just not there - body diverting it to healing I suppose. Sometimes I got distracted... and sometimes I forgot. I'm not sleeping well. I quit the percoset last Tuesday, because it was totally messing with me - I was watching the curtains melt in my hospital room, and it was keeping me high for 24 hours. I've been making due with ibuprofen and tylenol, and so far that's been okay until last night and a little this morning. I feel like my insides are doing somersaults in order to heal... with lots of random stabbing pain in weird places that don't seem like there should be anything healing there.

Meanwhile, I'm working to come to terms with the fact I will never have my own child. I almost broke down at the church cantata yesterday morning. Something about church is making it really hard for me. Whenever I go to church, the emotions just get ramped up. Not only am I mad at myself for my delusional belief in God's involvement in my life, I'm questioning my faith, but then, I'm also thinking of everything I had planned for our little family. I can still see the children in my mind's eye - participating in children's choir... getting impatient during the church service... playing a sheep or pig or whatever in the church Christmas play.  That's a hard image to watch fade away. The pastor even said we would have cute children... but the little curly haired brunettes, with green eyes, cute cheeks and slightly larger ears, are not to be. It makes me cry thinking about it. I know I need to grieve, but it is hard.

I told Wayne this morning, I know I'm going to need to watch my tongue at work. I deal with so many pathetic and sometimes just neglectful parents, I can see myself going off. How can someone do some of the stupid things they do, when they have been blessed with a beautiful child (or as is usually the case, many children)? Wayne and I would be wonderful parents, but life has denied us, and yet I've taught 12 year-olds who got pregnant by stupidity. I feel punished for my responsibility. All the years I've had sex, I think I had two pregnancy scares, and they were due to failed methods. Turns out, if I really wanted a kid, I should have been reckless and not trying to wait until I was mentally and financially ready. I guess I didn't realize how much the loss of fertility would affect me... or maybe it's just the shock of having it taken from me when I thought I still had some options.

After meeting with the fertility doctor, I had felt so hopeful, because he said it just takes three things - egg, sperm and uterus... so all we needed was a uterus. It sounded so simple. Now we're down to just one ingredient.  Wayne said it's up to me if we pursue having children, but I'm so exhausted. I'm sick of disappointment and losing what seems like such good odds, I don't think I could go through rounds with a surrogate, along with harvesting eggs from some other woman. My husband mentioned my sister, who would probably gladly donate eggs - but she looks so different from me. No one ever mistook us for sisters... I just feel like I would look at my child and always see him/her as my sister's child.  I would probably prefer finding a donor who kind of resembles me - but that would ramp up the cost to something just exorbitant and ridiculous. If we were fairly secure financially, and Wayne's business were up and running, making money, I might consider it... but now that just seems selfish. We'd only be having the kid because we wanted, not because we could provide a secure home and future.

Other days, I feel fine with the childless future. I look at my husband and other chosen family, and feel content and happy. Lots of people have been helping me and offered to help. I feel blessed and loved. I've been reading hystersisters - an online site/forum for women going through a hysterectomy for whatever reason. Lots of women have posted about how terrible their family is in helping take care of them. I can't lift more than five pounds, I can't bend over, I can't pick something up I dropped on the floor, I can't reliably stand up for long periods or sit in a regular chair, and I can't do my work... yet my family and friends are taking care of me, without getting mad or upset or sick of my helplessness. I feel lazy, and that's like a cardinal sin to me, but it's all ok.

So that's pretty much my ramblings for today. I'm getting tired and will probably fall asleep again.

Bells

I'm decked out like Christmas, but it's hard to remember it's that time of year. I want to be home. Waiting on my stupid digestive system to restart itself - which is problematic anyway, let alone after dramatic surgery. Hopefully will get to take something to help so I can sleep in my own bed, cuddled next to my husband tonight.

After winter must come spring

Stolen from a friend's status update on Facebook. It's a good reminder. This too shall pass and good can come. I'm blessed with more than I could have imagined just a couple years ago. I have a wonderful husband and good friends who are willing to help take care of me, even when I don't know how to accept help. My family loves me and supports me, and the doctor is going to be aggressive. I can beat this, and my life can be good even after surgery, chemo and radiation. I am strong, and there is too much living left for me to do. Now I just need to find a chemo hobby - something I can do for five hours while stuck in a chair with a tube running into me... Perhaps I'll finally finish all these novel ideas that run around my head and I've recorded randomly.

Surgery

 I was supposed to have a davinci total hysterectomy, keeping eggs and fallopian tubes, in order to get rid of endometrial cancer.

Problems started Wednesday during my bowel prep and liquid diet. I never do well if I can't eat my normal diet, so the liquid diet triggered a really bad migraine. At midnight, I started throwing up from it. My husband called the doctor on call, who happened to be my doctor, at 2am, and he wanted me to try and tough it out until my scheduled arrival time at 5:45 (when the OR first opens). But by 3, I was dry heaving (nothing left in the system) so badly, that I was having trouble breathing. My husband decided it was time to take me to the E.R.

At the E.R. they gave me some pain killer and an antiemetic, which was slow to work, but the headache did subside. At 6am, they rolled me across the hospital and I was admitted for my surgery. The nurse was concerned I wouldn't be able to have the surgery, because the wheelchair trip had triggered the dry heaving again. She got some more meds of some sort and let me sleep about an hour. By the time my doctor and the anesthesiologist met with me, I was looking improved and the nausea had passed, so we all decided to go ahead with it. I was especially adamant, since I knew it was the prep that triggered it, and there would be no point delaying for me to just go through the same problems later. Around 7:45, my husband and parents came in and it was hugs and kisses all around. Then they put the mask on me, and I was out.

Next thing I know, they were calling on me to wake up, but I couldn't get my eyes open. I could hear everything going on, so I heard an alarm go off, and felt them putting the tube down my throat. Apparently they had to reintubate when my oxygen was dropping. Eventually I was able to half flutter my eyes open, but the doctor was asking me to lift my hand and I couldn't do it. I felt totally paralyzed. The best I could do was to slightly shake or nod my head. I was working so hard to try and move my muscles, my breathing was stopping on and off, and then I think I passed out for a little while.

I woke up again and could barely lift my fingers, and was trying to move them again, but this just resulted in me doing a lot of shaking, so the nurse who was squeezing the air for me (don't know what that thing is called) thought I was having a seizure. Pretty soon, it felt like I had a hundred people crowded around my little bed. I looked unconscious, but I could hear everything that was going on around me. The doctors thought the muscle relaxer was not wearing off for some reason, and the anti-muscle relaxer medicine they were giving me wasn't working either.

I was in and out of consciousness here, but eventually they got me stabilized and I was very weak, but able to lift my hands and feet. At this point, they let my husband in to see me. He brought me a cute stuffed snoopy that played the peanuts theme music :)  I held this, but couldn't say anything because the tube was still in, and I had to focus in order to breathe. I could feel mucus or something around the tube, but I also couldn't clear my throat. I had a near drowning experience as a child, and that's pretty much what it felt like. The nurse, Joy, was talking with my husband and discussing how long I would be staying in the hospital, and this is the first time I was aware enough to realize things must not have gone as planned (beyond my trouble with the muscle relaxant).

I eventually communicated for them to get me a pad and paper. I wrote "Did they take the ovaries?" and Wayne nodded yes, with tears in his eyes. At that point, all I could do was focus on breathing, because I knew if I started crying I would probably choke to death. Instead, I asked some other questions unrelated to the surgery, because Joy said my doctor would be back to discuss things once I was a little more conscious. Even though he wasn't supposed to be there, the nurse let Wayne sit with me for about an hour. I spent most of the hour focusing on breathing, so my oxygen stats would go up enough they would finally remove the darn tube.

After Wayne returned to the waiting room, they finally took the throat tube out, but left the nasal canula which still bothered me. I was dozing in and out at this point, but had overheard more discussion from the staff, but waited to ask questions. My parents came in for a little while, as the nurse went to get my doctor. I was pretty aware there was more bad news coming, so I asked my parents to get my husband because I knew I would need him.

Apparently, when they opened me up, Dr. West discovered the cancer had spread outside of the uterus, and my uterus was far too large to remove without an abdominal incision. So they had to cut open my abdomen after all, and removed the uterus, along with the fallopian tubes and 11 lymph nodes. This was a major blow, because my husband and I had been planning to get eggs harvested after the surgery (recommended by the fertility doctor, so that I could heal before he stimulated the ovaries). We could have harvested the eggs before the surgery, but since no one seemed to think the cancer was that spread we decided to wait (it was stage 1, grade 1, and all MRIs and ultrasounds indicated it was fairly small). Dr. West said one of the lymph nodes looked suspicious as well, so now I'll be waiting on the pathology results. He also said I will now need radiation and chemotherapy for about six months, starting in about two weeks. Merry Christmas to me.

So, I managed to keep it together. I had had a feeling, but everyone (including a gyn-onc who is one of the best in the state and perhaps the east coast) had assured me the feeling was wrong. So, when it wasn't wrong, I was at least a little prepared. And besides, I couldn't start crying with the stupid nasal canula or I might choke. The nurse did sneak the canula out, even though my oxygen was still at 93%. I think she realized I was about to rip it out myself.

By 7pm, I was wheeled up to my room. A church member was there waiting, with dinner for my parents and husband, and prayers for me. She helped me get settled, because Wayne had to go find my parents and move his car to a new parking lot. I was able to suck on some ice with a little bit of cola. My parents only stopped in briefly, because they had to go home and take care of their dogs, and also stop by my house to get my dog, since we weren't planning on a four day hospital stay. Wayne stayed the night with me, and plans to alternate with my dad. We had a long night with getting pain under control and switching around IVs until we found a place that would stay put.

Sorry for the super long post, but it helps to vent about it I guess. Dr. West discussed some of the chemotherapy and radiation today. Yes, I'll be going through sudden menopause because I can't take any hormones, because they feed the cancer. We're going to treat this aggressively - which means it's probably bad. I'm never lucky in anything, but I might just win the 4% odds here. Six months of chemo and radiation and menopause and no chance for children... and my world got very small very suddenly.

Misfit toys

Watch "Island of Misfit Toys" on YouTube

I couldn't find the real Rudolph clip, but this video was cute. I'm scared tonight. My head hurts from not eating all day, so I'm sure that is contributing. I wish I could be brave and empowered and prepared to face an uncertain future. I'm terrified of going under and waking up broken. It's not like I could choose to go without the surgery and try to get pregnant.. If I don't go through with it, I just end up with a tumor that will grow until I'm dead. I just lose and I have so many fears for the future. 

I miss feeling the hope.  Even after I was diagnosed but Wayne held me, or when I was on the medicine getting my tattoo, or even after the fertility doctor appointment. But I feel it's gone now, and it's pretty final.  I'm the misfit wife with no uterus, the woman who can never have kids. not choosing not to have kids... I'm the tragic female of the Bible... I can't fulfill my duty. Only I don't get a late in life miracle.  I'm the misfit, and so ridiculous for feeling this way when so many other women have been through similar experiences. But still I'm on my island of misfit toys

Frantic

It's the holidays, which makes everything seem more frantic and crazy any way - but I feel especially frantic. I only slept about 20 minutes at a time the other night. And today has been the big bowel prep and cleansing, and I haven't really done anything all day, but I still feel like time is spiraling too fast, propelling me towards this terrible thing. What probably makes it worse is that I don't really have a choice in any of it - it's not like someone with endometriosis or fibroids or cysts, where hysterectomy is just one of several options. There is no choice with this. It's cancer... it has taken all my choices away and I have no say in anything that is about to happen.

Thanksgiving

The holidays are going to be tough. I figured that out yesterday when I couldn't stop crying long enough to tie my shoes. I have a cold, so everyone assumed my eyes were red from that. When I told Wayne about it last night, he was upset with me for not letting him know so he could help me feel better. I understand that, but I'm afraid to let him know when I'm feeling the worst, because I'm afraid to let him down or I'll share how I'm feeling and it will upset him. Yesterday, I kept thinking how different last Thanksgiving was. Last Thanksgiving I was meeting his family for the first time, and we were happily telling them about our plans to get married... planning for children soon after.

I keep thinking how the actual surgery and sickness would be scarier alone, but having the hysterectomy would have been easier probably, just because it would only affect me. I would be single, no prospects on the horizon, and I would figure it just wasn't meant to be for me to have kids. I could be like several other single women I've encountered who had to have the surgery - they happily had the useless organ removed so they never had to worry about kids, etc...

Meanwhile, every time Wayne meets someone new and makes new friends, I'm reminded what a great guy he is. He would be a great catch for anyone, and somehow I got lucky enough for him to fall in love with me... but I'm broken. If I were out of the picture, I'm sure he could find another women in no time that would be able to give him the children he deserves. But I love him, I could never let him go, and he loves me. We're stuck with my broken body, and it makes me feel like such a failure... I can't quite figure out how to get past that.

Well, I have more thoughts flailing around, but I've got a dinner to get to and I need to get ready.

Gotta have...

So we got our free subscription to sirius and this came on the 80s channel. One of my long time favs.
One year after getting engaged and planning on a family, it's official that the only thing my uterus will ever grow is cancer. I will need to have the hysterectomy, and will know when Monday after meeting with my original oncologist. I probably wasted to much time with the second opinion. I'm sick of everyone being so fucking positive about the outcome because it's never held true.  I was bleeding and assured it was just a problem with the pill, no big deal... Well it's not the pill, but don't worry, it's not cancer. Well, it is cancer, but here's a pill, you'll still be able to have babies. Well the pill isn't working, but we can cure it with this surgery and you can freeze embryos. Fucking forgive me if I don't believe it.  I read the first actual report of my current status today (I recognize most patients wouldn't understand the jargon, but I do... I probably should have been reading the pathology all along). Anyway I noticed it mentioned some lymph nodes that are growing, and they have not ruled out local metastasis. I'm fairly pessimistic at this stage.  The only lucky part of any of this, was I have a wonderful partner who had been right here going through all of this with me.
I guess I was trying to believe the optimism, but the way the doctors look at me has changed, so I don't think there is much cause for hope now. I'm afraid I waited to long, and I might lose my ovaries now and then there is definitely no chance for a family, even by surrogate.  There is definitely a chance of radiation... And if I weren't knowledgeable about doctor jargon, I'd have no clue about that. At least the fertility doc said my ovaries are good at the moment.

Stupid Girl

I don't know what's wrong with me. I'm playing a ridiculous video game with my husband, and I don't play games or really get that invested in them, and he's convinced me to do the PVP... and in a few short chat messages, the other players, who are probably 12 year old boys had reduced me to tears. These are probably stupid kids, the kind that I can easily reduce to little blubbering boys with a look and a few words... and I feel like the idiot. I was crying so much I couldn't hardly click the freaking mouse. That's not normal. I don't know what's wrong with me - and I feel all crappy and shaky now and on the verge of tears. I managed to hold it together and not log off in the middle of the game, but it totally ruined what was a very good mood. Wayne even says I did very well for my first game, and I don't feel I did that bad.

Even as I was crying, I felt the craziness of the moment. The sheer absurdity that complete strangers saying a couple stupid things would upset me! I endure middle school hatred daily, as I force them to do things for their own good, and it doesn't faze me. I don't care that much about games, I knew it was my first game, not to expect much... so why was I crying? I can't have something like that happen to me during school. Even twenty, thirty minutes later now I feel cold. I can look objectively at myself and the event and think how stupid... but I can't make my emotions match my logical mind.

In my head

Every post I write starts in my head. A thought or song flits through and I start composing. I do this with stories too... usually by the time I sit down to type or write, I've got a general skeleton in my mind, or at least a significant theme or thesis, or whatever. Tonight, I've been composing in my head, but it's been about twenty different beginnings of posts... so probably very stream of consciousness tonight.

It started when I burst into tears while watching TV. There was a kid in some show, doing something, and it made me cry of course. Then I was thinking about after the surgery, how my friends will say "You're so lucky, you don't have to worry about the hassle of your period anymore."  Which, yes, I would love to stop bleeding. Nearly a year of it is enough. But, many of these friends will have children... and all I will think is you're so lucky, you have a child. You have a family and a legacy and were able to use your female parts for something worthwhile. All the while, I'll have to smile and say "Yeah, you're right... I don't have to worry about that."

I feel torn about alone time. Right now, I'm alone in the house, because hubby is watching my grandmother at my parents. My grandmother has dementia and can't be left alone. I might have gone with him, but I wanted a little alone time and figured I'd get some work down. I did get a little work done, but very quickly I began to spiral down emotionally - but that might have just been the unfortunate scenes on the shows I saw. One show had a coincidental storyline in which a father was sending his only daughter off to college. They reminisced about him looking for monsters under the bed... I cried. It wasn't even that poignant, and it's not really that type of show - but I cried. I don't like my blog to sound repetitive - probably why I never really had one, because I was afraid of being too dull and repeating myself with nothing important to say - and here I am, crying once again over the fact I won't be able to have children.

I suppose I should be all excited that next Thursday is the big second opinion, that there might be some sort of hope... but as I've always said, it's hope that kills. If you want to truly torture someone, give them hope that they can escape... hope that it will end... then rip it from them. That is how you break someone's spirit. I was so afraid of the hope that filled me last year at this time. I was in a new relationship, that I knew would be the big one... Actually, next Thursday is the anniversary of our engagement. It was so exciting - planning a future and a family. Promising him my children would be his... now I have to work to relax when he talks about his ex step kids, because I realize that unless he finds another woman outside our marriage, those children may be the only ones he ever has. I had false advertisement, saying I was ready for babies, and I thought he would be a wonderful father for them - as if I had the choice. My body at that point had already been conspiring against me. Such a great practical joke.

Meanwhile, work is crazy. I can't seem to catch up or keep up. I don't think it's the cancer necessarily. My energy isn't too terrible - but I think some of it is the fact I have cancer, and going home I don't have as much to do, and then I'm reminded of what our home will not be used for... and it's like ghosts running through the house. So I think I might be doing more than I need to at work. As a teacher, there is always more I could do... especially as a science teacher. There is new research to read and implement, there are new lessons or labs I could design, technologies to integrate, budgets to plan, there are parents to call, children to tutor... the list goes on and on and on. And somehow, this year, I'm finding myself working on more and more. There are some new things in place that I think are adding to my work load, because many of the other teachers are feeling the same way, but I think maybe it's more.. or maybe I'm paranoid, and it really is just insane at work this year.

Well, anyway - Wayne's home and I've lost my train of thought now... probably a good train to derail.

Bumping

I really liked this song today, playing it in Wayne's car with the subwoofer bumping :D Baseline reminds me of some old rap song I can't quite place at the moment. It will come to me eventually. I don't think Wayne likes this song though - but not everyone can have fabulous taste like me.

Faith in Hard Times

So my parents asked if we were going to church yesterday. I think they blame Wayne, which I feel a little bad about. I also feel a little bad about letting my parents down. What I don't feel bad about is skipping church. I think I've fallen into being an agnostic. I was considering this today, and it's a little depressing to think most of my life I've been deluding myself. However, after a life of seemingly being led and directed and carried when necessary, I've been left completely by myself. I'm the kind of girl who goes by her gut, and for whatever reason at many points through my life, my gut showed me ways I was being led by God or helped by God. I developed a very complex personal faith, that incorporated tenets from several major religions...


And my faith has been tested before - by people who questioned me and by circumstances and events in my life. Yet, I always came out stronger in my faith. Sometimes it changed - but it was always there. Now I feel something different - it's not even like I've been abandoned by God. I just don't feel that the deity I thought was there even exits. And you can't be abandoned by something that never was. Maybe I'll change my mind - maybe somehow this whole experience will open my eyes to some new level of enlightenment. Instead, I see a rather depressing experience ahead, devoid of uplifting life lessons. My eggs are good - which is nice - but my uterus will soon be gone. Which means, if we want children it will be quite expensive, all for the possibility it IVF might take in a stranger's womb... and then we have to somehow support our little family, when Wayne still can't find a job. It just doesn't seem like any of this could possibly work out, so I feel a little selfish trying to go through any of it, just because I feel the need to have a child. And why should I feel this need? I don't believe anymore that a God cares if we go forth and multiply, and I know the depressing statistics on human population and the thought of how close we could be to carrying capacity...

meh - I just don't know now. So I guess that makes me agnostic - I don't deny the possibility of a God (though if there is one, I doubt very much there is any thought given to the goings on of life here on Earth), but I doubt very much in the existence of such.

Down

Watch "blink-182 - I Miss You" on YouTube

I'm posting from my new phone app, so I hope my imaginary audience will forgive randomly odd auto corrects.  Like it just tried to change audience to silence... So ironic. I guess we all hope to toil under the delusion that our lives have meaning and significance enough that others, even strangers, would care to learn about them.

The song came to me from a dark time in my past. A good friend had just been tragically killed,  after I had lost a large number of family members, and I was coming to the realization I could no longer progress in med school. Despite the fact I cried every time it came on the radio, it helped me persist.  It helped me find significance and meaning in my life. I thought maybe it would help again.

I'm so overwhelmed by everything. I can't get caught up at work to save my life... I keep falling behind in my graduate course work... I feel like I'm neglecting an important new relationship in my life, and I worry about failing my husband. Then there is the complete uncertainty of when the surgery will be, our if it will be,  because I went for a second opinion,  and now I wish I hadn't because it will probably just cost us more money and time for a different doctor to say the same thing. Then money is always an issue. With Wayne still out of work, keeping my job becomes a serious worry, plus we have had to rely on my parents to help financially... And they offered to help make IVF with a surrogate happen, but the first fee we told them about related to the potentially 90,000 dollar process and I get grief from my mom. Awful thoughts fill my head.

I'm sure I need to talk to a therapist, but the process of finding one promises to be so fucking difficult I don't have the energy on top of all the other bullshit I'll have to find out - like how I'll be able to take off 6 weeks of work and still get paid...And still teach the students to pass the stupid test so I score well as a teacher on this new evaluation system, which I can't fully comment on, for fear of being scored poorly and losing my job. Then if by some miracle we have a baby by surrogate, I have to figure out if I can get maternity leave... And I have to alter my expectations and realize we'll be lucky to have one kid, forget two... But see, that's me being positive... At least it sounds like I expect to have a kid...

Then I avoid my best friend, whose going through a tough time, just because I selfishly don't want to be around a pregnant woman, and also feel guilty about the fact I'll survive my cancer, and her mom probably won't.

I guess I feel my main purpose is becoming my job again, which is something I had thought I moved past. So now it kills me I can't talk about my job, just because no one ever wants to hear about it. I'm back to where I was 6 years ago, when I would start to talk about my job, and quickly realized from the glazed looks no one really cared, they had just asked to be polite and I was one if the few people with a real job and no longer in grad school.

It's hard to be alone among people, and I think that makes the loneliness worse... Feeding the depression and the darker things. Then my usual methods for dealing with such emotions are cut off to me. Can't have sex, because of my issue... Can't eat because I really want to lose the weight again and be able to wear my rings... Can't cut or burn because that's not really healthy, and I'm sure my husband would frown on that. My only recourse is to go numb, just like I was for so many years when everything was in black and white and meant to be forgotten. Of course, then I was supposed to somehow die young... I had figured I wouldn't make it to 25.

Lucky

This song came on Pandora as I was working at school today, trying to get caught up on all the work I need to do. I started crying of course - I know I'm so lucky and so blessed to have my wonderful husband. It was only a year ago today that he had convinced me to drive up to Michigan and meet him in person. This year has been far too much of a roller coaster for me, but I feel so glad to have found Wayne during the course of it. It's not every day you find a soul mate, who is willing to do the work to stay soul mates through the good and the bad.

Now, I should get back to work.

New Album

Just downloaded this new album from Fun. I like it...
This one got to me though:

I feel so all alone... no one's gonna fix me when I'm broke.
I also know I shouldn't feel this way - because I do have such great people in my life to support me, but my heart doesn't seem to listen to my mind.

Nothing in particular

I have nothing in particular on my mind. I'm feeling totally overwhelmed by school and work at the moment. Then the cancer thing seems to fall behind, but I'm at this point where things are cascading fast so I can't really put anything off. I'm going to get a second opinion at the Massey Cancer Center. I'm pretty sure they will stay the same thing, considering how bad my symptoms have been this week. I was bleeding as bad as I was before the medicine, and the pain this past Wednesday night was so bad I didn't think I would be able to work the following day. It took a lot of pain killer before I felt normal enough to drag myself to bed and sleep. I went in to the doctor when I started bleeding again last week... or was it Monday? I can't remember now, it's just that bad... I think it was actually Friday. My mind is this jumbled mess.

I feel mad for no reason randomly, then I want to cry. When I'm at work, I feel like super teacher because if I pause for even a moment to consider things, I get too sad to do my job. So I throw myself into it, and hope for the best. I try not to think about what's going to happen to me when I'm helping a girl study because I'm the only one who's bothered to take the time to go through the flashcards with her. She's been failing quizzes for two weeks, and no parent bothers to do their job. And here, I could be a good parent, Wayne I know will be a good parent, and we can't have children because of my broken body. But I have to shove these thoughts to deal with later, and when later comes I feel crippled. My brain shuts off, and I then I can't get the other work I need to do done.

I didn't take a class last semester, because I got sick and just couldn't do it. I didn't know I had cancer at the time, but now I'm trying this class, and it's not too difficult, until of course this week. Suddenly we are piled high with assignments and work, and it's mostly the education B.S. stuff, and I just don't have the energy for B.S. I just wrote these stupid "goals" for work, which is basically rolling the dice and randomly chose one of my classes for them to judge if I'm a good teacher based on the scores of these few students... so I'm sick of B.S.ing at the moment. I'll get through it I suppose... probably tomorrow... but I'm still behind on grading papers. The schedule I have makes it so pretty much every day there is more stuff to grade. I keep falling behind, and when I'm out, it's worse because then there are three or four things to grade.

Sexy time?

Well, not so much sexy time. I am so tired and exhausted and just feel so completely unsexy. Too be honest, I think I'm a little nervous about sex at this point. Even though nothing has really physically changed from a week ago, I just feel like I won't be able to satisfy now. It's such a ridiculous thought (I am good, after all ;), but it's been running through my mind this week. It's totally killed my libido. I feel like I should be horny, but I'm not... how odd is that?

Dreams

My dreams betray me. I dream about children... I've probably dreamed their whole life at this point. My mind went into overdrive - probably the result of just wanting what I can't have.

I also worry about losing my uterus. I hate bleeding... it's come back, and I did it almost nonstop last spring... and gee - after the hysterectomy I won't have to worry about that. But then it's because I'm losing something that makes me a woman. I'll be the broken woman, who can't give my husband the family that it's my duty to give him. I keep fixating on this. I know he tells me not to, but it's hard to stop your mind. In the moments that aren't completely filled by something else, my mind wanders around...

Remember

Sometimes it's good to think back, to help moods. My husband is a wonderful man, and right now, he's been giving me what I need. He gives me a purpose and a function when he asks me to do little things for him, which keeps me from wallowing in my thoughts needlessly. He also tells me and shows me how he needs me. It makes me think of this time last year... when I was about to embark on a little road trip that changed everything... a happy time when all possibilities were open to me.

No music

No song today. I don't feel any music. I feel empty and broken. The doctor confirmed my fears - hysterectomy is next move. We will see a fertility specialist soon to discuss egg harvesting and surrogacy. It's totally surreal. My husband is holding me and being so wonderful, and I think maybe if I close my eyes this last year will be a dream. Like Sliding Doors - I've been living my parallel life... but I won't have the cancer... I won't have Wayne either, but at the end of the movie she got her chance again with the guy anyway.

Everyone says I should be glad I'll survive... I won't die... I'll have my life. It's not fucking enough. I'm sorry. I guess I'm selfish. I don't give a shit about my life, not when it means I'm a broken woman. I'll be an empty shell, no different than a male to female post op tranny. And my faith broke too. I had a major "crisis" in faith once before, when a very good friend died senselessly. But still, the way I thought things worked still seemed to be in place. Now, I can see I've been delusional. My entire life, I've had delusions of grandeur (it's a clinical diagnosis) and I've let my delusions guide me. In reality, I should have started vitamin D and a better antidepressant cocktail back in med school, and I'd be a doctor right now. I'd have plenty enough money. I'd be alone. I might still have the cancer, but it wouldn't matter, because I would still not want kids.

It's so silly to mourn something I didn't even want until a couple years ago... to mourn children who never were. Yet I feel this certainty now that I haven't felt in a long time - there will be no children for me. And I've pulled my poor husband into this with me. He's a wonderful man, who charms everyone he meets, and could have married anyone. Unfortunately he chose me. He helped me believe in positive outcomes, but I just can't at the moment.

Unfortunately, I think I'm going to need to see a therapist again. I hate therapy, my thoughts are so dark. I keep waking up crying. The only time I don't want to cry is when I can numb myself... drugs, alcohol, sleep, work... whatever.

Long Weekends

The video doesn't quite match my mood - but that's part of the point at the moment.  The doctor called Friday and the biopsy showed there was still cancer. He said "This concerns me"... oh great... so deliver news that concerns the freaking doctor on a Friday night so I can worry about it all weekend. I couldn't stop crying last night. I can only barely contain it today (I woke up crying - twice). I would love to be positive - but that didn't help before. I was positive and didn't jump to the conclusion that it's cancer... no one thought there was any chance of that, so why think it... then it was. I was positive and thought the medicine would take care of everything... the doctor wasn't concerned about the biopsy giving bad results at all... and then it was still cancer.

And I'm crying over crazy things, and I want to let my husband in, but I don't know how - plus he'll just want to hush my concerns. But I'm worried about him in all this. I'm upset that it's still cancer. I'm upset that the medicine has no effect on my particular cells apparently. I'm upset that the medicine that doesn't work has made me gain so much weight, I'll never get it back down. I'm upset that I can never give my husband children. I'm mourning over children that never were - but who had seemed so vivid in my dreams lately. I thought it was a positive sign from God - but I forgot the medicine makes the dreams crazy vivid. I'm upset to find out God isn't anything like I thought, if God even exists - at the most Wayne is right and God doesn't care about us little peons. I'm upset to think that what I had learned last fall, what I thought I knew and what I thought came straight from God was completely not.

And I'm sad I won't be able to give my husband children. I always get a little upset when he refers to his ex step-children as "my kids". I know Wayne has wanted children for some time, but had bad luck in that area, with crazy exes, etc. But, I only mentioned it a few times and managed to bite my tongue - because I knew I would ultimately be the one to give him his kids... and they would be our children. But now, I won't... and we won't really have other options open to us for various reasons - so now he will only have those children as his. And they will be his... completely separate from me, something I could never share. And also, always bittersweet, because they didn't get to be his for always. I'm feeling baby fever too, so I'm sad about losing my chance to be a mother. I don't know that I would have been good at it... but I would have tried my best.

And so I find myself biting back tears at a scene in a commercial with a blond mother and a blond daughter. I dreamed I would have a daughter with deep reddish brown hair - an independent fearless young woman. And a son with a funny smirk and gleam in his eye, who is always up to mischief, but like is grandfather and father, he would turn out to be a responsible, mature, wonderful prince of a young man. But these dreams float away in the light of reality.

And this is what makes me cry over this long weekend. And this is what I can't vocalize to my husband as he holds me and watches the tears fall.

Catch 22

So my insurance isn't covering the pathology lab that diagnosed my cancer. Cost - $1800... because I'm sure to just have that lying around. They don't like the particular lab the hospital sent the sample to. So, because my hospital didn't bother to check a list from my insurance and see, oh, that lab isn't on the list, let's send it somewhere else, I'm supposed to pay nearly 2000 dollars? I was unconscious, and as far as I knew, they were diagnosing it in-house. They are a large hospital system, so shouldn't they have pathologist on staff? No, wait, they have to send it to a lab in California. The insurance company says I can contest it, and will get a response to my written contest within six months. The lab says the money is due now. I told them both I don't have that money, and won't. My husband has no job, unemployment has yet to come through, and oh, yeah, I keep having $30 to $150 copays for getting my cancer treated. Though, I guess I wouldn't have the copays if I had known diagnosing my cancer was not covered. Well, that would save everyone some money wouldn't it, if I just hadn't gotten diagnosed?

So frustrated. And then the insurance company is giving me shit about the fact I don't have them anymore. Cause I totally had control over the fact my employer changed insurance companies and went to a crappier, more expensive one (out of pocket expenses) that forced me to change my primary care provider now that I'm in the middle of cancer treatment. Grrr.

Breaking Up

No, my marriage is still going strong. It's just I really like that song, and it's really a great description of a breakup and the feelings involved... especially after time has passed. It's one of those songs, like Hey Ya! that is just fun to sing along with and has a great beat, but when you think about the words its a little more depressing.

Meanwhile, I'm going to get a tattoo on August 23rd! Woot - birthday present :D It's going to be a pseudo butterfly - so it will look like a butterfly from a distance, but it's going to be made out of peacock feathers for the wings, and the body will be a peach cancer ribbon (for endometrial cancer). It's going to go on my arm - originally I was going to put it on my upper thigh, but Wayne pointed out I would only be able to see it when in my panties... I'm not sure how much easier it will be to see it on my upper arm, but he promises he sees his pretty well. Meanwhile, we'll also start saving so maybe Wayne can finally get his sleeves finished (one needs covering, so it will take a lot of work).

Nonsense

It's extremely frustrating that insurance would cover an optional abortion, but will not cover infertility treatments necessitated by having cancer. I'm not a conservative, but I can see why this would piss people off and make them think it's some sort of agenda. Of course, it really comes down to one thing - the almighty dollar. It's way cheaper to get rid of a baby than to help create one.

Moving right along

I think cancer is a bit of a self-centered disease - or at least it makes me feel a little self-centered sometimes. It's not a bad cancer - and my best friend confessed she has a little cancer envy - she wants her mom to have the cancer I have. But of course, I'm thinking how awful it is because I might not have children. Of course I think God (the deity, etc) wants to keep me in check. I have stage 1, type A cells - the doctor officially confirmed that the cancer hasn't even penetrated the full wall of the uterus. Meanwhile my best friend's mom is dying and choosing between treatments that differ in terms of weeks and months, so I can't ever feel too sorry for myself. Then of course, I do get a little overly tired from this, but not so much I can't function - but when the yard needs to be cleaned and my energy is flagging just a little and I don't want to get out of bed, I want to yell "Cancer" and use it as a get out of all work free card. But then I realize how utterly lazy this would be of me, and sigh, and get up and do what I'm supposed to anyway. :p Meh to being responsible.

As it happens...

Back from the wedding and honeymoon. Lot's of fun, interesting, exciting things... lots of photos... Lots to share. But what overpowers it all? Our final wedding gift - Monday morning Wayne got a call just after his alarm went off to tell him he had been terminated. WTF? When did my life become a lifetime movie? This is seriously too much to believe - meet a guy online, he moves to me, we get engaged, I get sick.. find out two weeks before wedding its cancer that may prevent me from having the kids we want... then week after the wedding he gets fired and we're down to one small teacher's income to support us and to pay the medical bills.
Ugh... But I guess It Happens...

MRI

Had my MRI today. Stuck in a tiny tube, unable to move, and having to do deep breaths... yes it was meditation time. I meditated on the word "One"... very helpful. But then there was one part where the noise the machine was making sounded just like Fatboy Slim Funk Soul Brother... and then that was repeating in my head...

Grade I

It's grade I cells and today I get the MRI to find out if it's stage I (keeping fingers crossed). I get to take this lovely drug called Megace, which will hopefully keep the cancer cells from regrowing and keep any tumors from developing. This is great news, because if it works (get another D&C at the 3 month mark) then after 6 months we can start seeing a fertility doctor. Dr. West (the oncologist) said that it will be difficult for me to get pregnant, because this is usually associated with ovulation problems and trouble for the embryo to implant, so we're just going to start out with the fertility doctor from the start. That's assuming (fingers crossed) it really is stage I as it seems it might be (given the negative biopsies and paps from the past couple months). This is great news!

Now I will just have to combat the weight gain, because Megace also happens to be a drug that makes you very hungry so they give it to AIDS and other cancer patients to help them gain weight... so woot... give the fat girl weight gaining drugs. I've already added 20 pounds since this whole mess started in January. So, I'll have to go on super vigilant mode. I've told Wayne no more little debby or other snack foods in the house. I am no good with temptation - and that's probably why the only time I've ever lost weight in my life is living alone. Because then I just didn't keep any foods in the house to be temptations.

I am going to finish reading a book I got a while back called the Hormone Diet, which is about eating to try and match the natural rhythms of the body, and trying to balance the endocrine system. I think eating with great intention might help me lose the weight, and also could be a bonus and help me be more fertile when the time comes. Plus, now that I'm hopefully done bleeding so much I can't leave the house, I will actually be able to get back on my gym schedule. This summer I have big plans - dog walks at least once (maybe twice) a day for a mile, yoga to get my body going, and gym at least 3 times a week. (I have a secret plot to start dragging Wayne to the gym as well, because I need him to help me with the weight training part - because you have to do more than just aerobics to lose weight).

Matthew 9: 20-22

20Just then a woman who had been subject to bleeding for twelve years came up behind him and touched the edge of his cloak. 21She said to herself, “If I only touch his cloak, I will be healed.”

22Jesus turned and saw her. “Take heart, daughter,” he said, “your faith has healed you.” And the woman was healed from that moment. 

Matthew 17: 20

²⁰ He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

on Joy

When Wayne and I told my dad we were getting married, he told us he wished us Joy in our marriage. This is not the same as happiness. Happiness is ephemereal, but joy is lasting and long - it goes through sadness and pain, anxiety and surprises. Today I think I've come to understand this. This morning after leaving Subway, where Wayne bought me lunch, I felt a great sense of joy. My stomach is still in knots over what the doctor will say tomorrow, and I'm feeling some stress over the wedding, and I'm annoyed about the laundry that needs doing, and I swear one day I will kill the puppy (3/4 Rotty, 1/4 lab, and waaay too much energy), but I still felt a sense of well-being that all would be well.

I think this must be what my dad was talking about. It helped me get through several chores today - like finding out that I did not choose to get cancer coverage, but ce la vie... I did find out this oncologist will be covered by my new insurance (which switches just so conveniently on July 1).

Meanwhile, in other life news, I painted my nails today - rather disastrously! But this is precisely why I'm going to have a professional do my nails for the wedding!

And now I'm working on the bluegrass dinner music playlist - I thought that was the best way to work the roots into the wedding, without expecting people to dance to too many bluegrass songs (and I also figure the motor city DJ will not have a large selection of bluegrass... might just be my southern prejudice...) But doing the playlist on my dad's comptuer, means fixing his mistakes and actually importing the songs onto his new comptuer from the old one - sometimes one by one *groans*

Anyway... Seek Joy... I just wanted to post this so I didn't forget tomorrow.

Up Up Up

Day 2 and 3 after hearing the news I had cancer were rather more blurred. I talked to Wayne several times on the phone, but don't remember specifics of any conversation. I don't think we talked much about the cancer itself. I asked him if it was okay again... You see his first wife had been diagnosed with MS just months after they were married, and it essentially ended the marriage because she shut him out and gave up. Obviously, my diagnosis is not nearly as bad, but I didn't want him to feel saddled to another sick person... He said he wanted to head up to heaven and beat someone up.

My mood was at odds with the venue. My family took a hike and visited the nearby visitors center, where I took many pictures of the butterflies. After breakfast I had also gone to find a spot in the meadow to sit and think on my own. I snapped lots of pictures of the flowers and the butterflies and other insects... I heard a critter, probably some sort of rodent, and I determined to remain still and silent as long as I could to try and capture the creature in my lens.

 

I was having fantasies of leaving civilization for the woods and becoming a nature photographer. Seeking out critters of all sorts for the creation of pretty postcards. It was a perfect plan... and I was about to capture this rodent, or rabbit, or pica or whatever it was, on film.
Then my mom walked up behind me and the rodent made a blurred run for some cover. I think my mom was a little spooked, but I could tell from her voice she was concerned for me. Every time they looked at me, I could see it. They were gauging my reaction and my emotional state. I had to plaster a smile, or at least not frown or cry... I had to make them feel better.

I'm sure I could fall apart in front of them, they are family, but I've never done that. I take care of others. I always try to help others, make sure they are comfortable, find out what needs to be done and do it for them... That's how I cope when those I love are hurting. I've hidden my own hurts from most of the world, and just kept going. Wayne is one of the few people I've let see me cry, or would feel comfortable just falling apart in front of him. I sent him a text to let him know that, and focused on sleeping as my family traveled in the car to North Little Rock, where we stayed an extra night.

North Little Rock is like my childhood home. As a military brat, we never stayed any where long, but we always came back to Arkansas - for visits, to live between deployments, to bury our dead, and this time to celebrate new beginnings. And as we stopped at a sonic, I tried not to think of it as a place where some of my hopes and dreams died. Saturday morning, on the first crop duster plane, there was a child screaming bloody murder a few rows behind me... and I started to cry because I fear that child will never be my own. I mean, seriously, who wants a screaming child?

I felt like I was mourning something - but how can I grieve for something that never was. How did biology get me like this? For two decades I had decided to be the one who didn't have kids, who didn't have a husband, and who was content with herself. For some months I had managed to live that way... and then hope appeared in the form of Wayne. And now hope was dying... all these thoughts swirled in my mind and I knew I needed to rise above them - just as the plane rose above the clouds. So I pulled out my trusty iPod and put on music to lift me out of the bad mood... and closed my eyes... and willed myself to sleep until the plane landed.

This helped lighten my mood, so by the time the seemingly interminable hours of travel had passed, and I saw Wayne at the bottom of the escalator, I was able to control myself and keep from sprinting to him. This was good, since I would have taken out an entire family in the process (don't these people know to stand to the right so people can pass on the left? noobs). Seeing him, standing there, solid... holding me... hugging me, kissing me... I knew he was telling me the truth. I knew he would be with me through this, and no matter what size our future family would be, we would be family. And I knew everything would be okay. The stress started a slow leak, deflating the balloon that had grown in the pit of my stomach.

Pictures

Despite the news and the pall that cast on my trip to the Ozarks, I did take some pretty pictures, shared below.

Dive-bombed by a bird protecting its nest

Zebra Swallotail

Bet you didn't realize how close Paris and Havana were to each other

The Old Mill in North Little Rock, Arkansas (taken on my phone)

(taken on my phone)

Those shapes are turtles in the water (taken on my phone)

The News

    I was in what must be one of the most beautiful places on Earth, attending the most joyous of events, the wedding of my cousin. The phone reception was bad in the room, so when the doctor called I kept losing the signal and had to run outside before she called back. The Ozarks are beautiful, but cell phone reception is notoriously bad in the mountains. After several frustrating can-you-hear-me-nows I found a spot with three bars and tried to stand stock still... I was still standing stock still as she said “I’m sorry to have to tell you this, but the pathology came back and you have endometrial cancer.”  You have endometrial cancer? Who is you?

    You know how you read about people getting the bad news about the big C and they don’t remember anything else, and you think, sure... that’s not possible... I wouldn’t be like that. I’m a rational human being, who understands that cancer is survivable in the modern world, there are brand new treatments... even cures for some cancers (albeit preemptive ones). But, there I was on the phone and I know I had a further conversation with the doctor. I even made a very special effort to remember the part where she said “we made an appointment with the oncologist for Wednesday...” though I don’t think I quite caught the time... I’m going to have to call to double check tomorrow. And I also know the answer to my hysterectomy question - yes, that is the most common treatment, but we can probably save the eggs and surrogacy could be an option.

The view, about half an hour before

I think I had stopped breathing about then. I don’t remember breathing again till I had texted my fiance three times (to work and his cell) telling him to call me immediately... then I just made the call once I found four bars. I know I was breathing then, because I was gasping through tears. I was acutely aware that I was standing (literally) on a cliff, and that there were wedding guests seated about fifteen feet behind me admiring the view and the simple yet elegant decor. I could hear the anguish in his voice as he repeated, “What is it Kate?” or something like that (his elephant memory probably remembers the words, I just felt the mountains and the clouds falling in on me and my entire being sucked into a single point in space). I finally choked out, “Ca...a..cancer... it’s cancer...” and then I covered my mouth to hide the sobs. Only that morning my text said, “This place is part of my blood. We will have to come here together and bring the kids when we have them.” How naive could I be?

I know we talked some after that... I know there was some promise made to call him after the wedding... because I had to get ready... I had to tell my family. I didn’t tell him how much I needed him at that moment. I didn’t say how much I wanted his arms around me and I didn’t know how I could make it three more days until I saw him again. I didn’t beg him to try and find me a flight home immediately, no matter the cost. I determined I would be strong, I would survive, and I would get through the wedding first. And then, after I hung up, it dawned on me...my wedding was exactly 2 weeks away... almost down to the exact minute. Then I started to feel ill. Those low level cramps ramped up to severe pain and nausea and I wandered the hotel in pain looking for my mother and sister.

I believe in a supreme deity, and I believe God works in mysterious ways, that sometimes are exactly as we need it to be. For the first time in at least a decade, my family was on a trip together - just my mom, dad and sister. No extras, no boyfriends, girlfriends, fiances, etc... just my core family. And so I found them and told them - mom and sister first - mid pool game. I think I could draw the pattern of the balls on the table, because that etched into my mind as my mother hugged me so tight, I thought I would never be able to break the hug. By the time I told them, I had googled the cancer and looked up the statistics... so I could tell them about the 95% survival rate for Stage I (at this point, I still don’t know what stage I am). I told my dad, and I hugged him and didn’t want to let go. And then we all got ready for the wedding.

I plastered on a smile, and sniffed back the tears. I was grateful for the setting sun and the outdoor wedding, which allowed me to hide behind my sunglasses. The ceremony was lovely and breathtaking, and I didn’t take a single picture. I sat with a niggling fear, and an overwhelming grief of what might be lost. I knew what I would ask W when I called him after work, and I didn’t know how I could choke that out. 

At the reception, I nearly ended up split from my family, and hit a tiny nuclear meltdown inside, immensely relieved when someone made an extra place for me next to my sister. She has the gift of gab and is a diva of small talk. I knew she could carry me through if my social skills failed. I managed to laugh politely and smile when it was appropriate. I ate the food, but it all tasted like cardboard. In fact, just about everything I’ve eaten since has tasted like cardboard - though every meal I feel I’m overeating nonetheless. Then Iz came on singing “It’s a wonderful world” (or was it the Armstrong version??) and it was 9 o’clock and I couldn’t take it anymore. Tears streamed down my face as I walked the impossibly long hallway to my room. I dialed and he didn’t answer the first time, but finally did on the second call. We spoke for fifteen minutes; I watched the clock. I asked him if he still wanted to marry me, and his happy laugh was the most welcome sound in the world. I was silly... he would be there... and I thought to myself I was silly. He had already been with me these past months as I suffered the symptoms, days when my energy flagged and I couldn’t leave the house for more than fifteen minutes at a time. He just wanted me well... and he had done research.

Wayne told me what he had read, much of it similar to things I had read, but in more detail. He had done nothing but google since I had got off the phone with him and gone incommunicado. I had just not wanted to text, and as I said, cell signals were atrocious. He had told his mother and a few friends at work, and one was coming over to drink a little with him now... could I call him back in half an hour? Sure... why not?

Back to the wedding. Back to avoiding answering questions about my own wedding. Suddenly I didn’t want a wedding at all (a marriage yes - just not the bother and hoopla of the public ceremony)... suddenly I couldn’t remember what details we had planned. Dodged and weaved and smiled politely some more and then was back in half an hour. I think my sister caught the bouquet, and some other funny moment had occurred, but it blurred... there was cake (I’m sure it was delicious but it was just cardboard to me), and then I was back on the phone.

I don’t know what we talked about, and I know he had indulged, but after the third conversation of the day, I felt slightly better. I decided to change and walk with my sister to a nearby cabin for the after party. There was laughter, and discussion of bugs versus beetles (there was a very passionate entomologist in attendance) and there was just enough vodka cranberry to make me feel like I might actually sleep.  Which I finally did at some point around one or two in the morning, after a few texts with my fiance - I love you more... no I love you most... nuh huh... yuh huh... kisses... and cuddles...