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.