So we are on vacation number 2. Number one was quite an adventure - 10 days with my parents, sharing hotel rooms, on a revolutionary war odyssey. We started in Philadelphia and saw Independence Hall, The liberty Bell and various other sites of interest. Then we went to New York. We did take in a show (Kinky Boots - awesome btw), but took a walking tour of lower Manhattan to discover the sites and NYC's role in the war for independence. After New York was Boston, with the U.S.S. Constitution (I know, War of 1812, but still very cool) and the Tea Party Museum (highly recommended). We then drove to upstate New York and took in Fort Ticonderoga (where they were hosting a reenactment), Fort William Henry (which was literally next door to the hotel) and finally the National Park where the Battle of Saratoga took place. We also did a ghost tour at Fort William Henry.
It was very interesting, but one of my favorite outcomes of the tour was some of the conversations I had with Wayne. Now we are on our vacation in Detroit (yes - I vacation in Detroit), checking in with all the in-laws. Wayne's youngest niece is just 15months, and adorable. She really loved me, and we played some music together and she loves dancing. She kept wanting me to hold her, and of course I'm just in love with her - but it leaves a bit of a lump in my stomach. I'm glad we don't live closer, just because I did have a few crying sessions since we came. Makes me wish there were a way to have a child.
But otherwise, I'm also trying to keep up with my violin/mandolin practice. I've finally taken the advice of my fiddle teacher (one year later) and do a mode (essential a scale) a day. I practice on mandolin, then fiddle - both scales, arpeggios, etudes from a book, double stops and then some actual songs in the right key. Today it's Tuesday, so it's key of G - and I had a nice version of Irish Washerwoman that fit.
I found pinterest a couple weeks ago and went nuts. I love the visual links. I've also been inspired to do a lot of sewing. I making some aprons, which will get pictures posted at the appropriate time. I think after years of doing various crafts and what-nots, looking for my own favorite hobby I've officially settled on sewing. It's just unfortunate that it can cost quite a bit - but Wayne thinks I could sell some of my stuff on etsy :D We'll see. Maybe that will be my summer project - sell stuff to support my personal hobby. I've been drawing an entire line of aprons inspired by various things - the 50s, Steampunk, kimonos... just goes on. Anyway, I'm excited we set up the office so sewing will be far easier now, with a dedicated sewing table.
I found this song randomly browsing YouTube as I was contemplating my blog entry. Lately I've had some nightmares - they aren't typical nightmares... they seem like happy dreams - happy family, everything going well. I'm usually pregnant in the dreams, or toting around a baby. Then I wake up, and that's when they become the nightmare... because they are hopeful dreams... and to quote Hamlet 2, hope is a demon bitch.
I haven't shared with anyone I've been having the dreams, because I know it's just my mind trying to deal with things. I've had a few days when Wayne was in the office working on the computer and I was in the living room working on a sewing project or watching TV, and I had flashes to the distant future, and I can feel content in that life. Just the two of us into our elder years. So I shove the dreams to the back of my mind.
So what makes me write about them? There are always random moments that pop hidden things to the surface. Today I read the Facebook announcement by my cousin that he and his wife are expecting their second child. A pregnancy that has been so easy, she was 20 weeks along before realizing she was pregnant! I pray their child is healthy - their first one had a little scare when he was born with a harelip, but good surgeons have probably made it so there will be no trace.
The song seemed appropriate though - there is room for happiness I know. I have this fantasy of winning the lottery... buying a little land with a nice size house... adopting some children to fill the halls. I was browsing the kids available for adoption, and know it wouldn't be easy to give a child (or more likely a teenager) a new home, but I think we could be good parents... but I know it's a fantasy. Sometimes I think it's fun to day dream for a moment - browse nice houses with land for sale... look at home plans... look at children needing a family... but it's probably not a good idea, when it can lead to a trigger.
I know there is room for happiness... this empty void inside of me can be filled I know. I just have to keep going and leave the fantasy of last year behind.
I have been a world traveler since birth - a military brat, I was born in Germany and took my first transatlantic flight a couple months old. I've seen much of Europe, backpacked with friends and had a few adventures. From childhood trips, I've traveled across the southeastern United States extensively. Then I made a trek between Virginia and Alabama for several summers to work at Space Camp. This summer my family is going north for a trip to do some Revolutionary War sightseeing (I'm a history geek, which is a trait shared with my dad and husband). I lived in Kansas - my husband is from Michigan - I have family in Pennsylvania... But I've never quite made it West.
There is a place along the West Coast that calls to me. I see pictures, and my heart skips a beat - like I'm seeing a lost love. Now, the mountains tend to do this to me - whether it's the foothills of the Alps in the Schwarzwald (Black Forest) of Germany or the Appalachian Mountains and Smoky Mountains. I have yet to see the Rocky Mountains, but I'm sure I will one day. However, the place that beckons me is not so mountainous... instead it is the forest. And when I think about it, it's the forest of the mountains that really makes my heart soar.
What beckons me is the temperate rainforest in the northwest of the north American continent. The Tongass National Forest includes part of this.
I long to walk among the moss covered trunks of the giants of the forest. I want to smell it and close my eyes and listen to it and feel the wind whip up goosebumps on my skin. I imagine a smell of must and mold and earth. I imagine putting my fingers on piece of fallen tree, and watching as it the mass of once living pulp disintegrates in my hand and falls to the forest floor, where a multitude of iridescent insects await it - the cycle continuing.
So I've determined I'm going to go there. Even though I'm a little concerned about the bears - I'm going to figure out how my husband I can make a pilgrimage there one year - maybe next summer or the summer after (since I'll be also saving to go visit my sister in Prague too). So, I guess I've started my bucket list - and it begins with the Earth and nature and the rush of water and the whisper of wind through the trees.
I have no music for this one... I've been out of touch listening to my music. It's a goal I made just today actually... more quiet time with music, less time with TV on. I've neglected this blog a little, but part of that has been good. I've been in a better mood, and been doing some fiction writing and some work on school stuff (seriously, that's a good sign!)
I'm also doing some journaling, but figured I might share some here too. After my fourth treatment, I got a cold which wiped me out, and now after my fifth, it's just like everything is catching up. I'm exhausted. It's a bone weary, joint aching kind of exhaustion that you should only get after doing something like building a stone fence from scratch or something. It makes me feel awful - because in my mind, laziness is a cardinal sin... and how lazy must I be to feel tired just from walking the dog down the steps? or showering - that is so ridiculously exhausting... And I'll get up and take a nap within an hour or two. But I need purpose in life, so I've been getting up to make Wayne his coffee, then the last two days I gave myself permission to go back to sleep until 11am, because, as Wayne reminds me, my job right now is to get better! And sleeping in just might help a little with that.
So, for the journaling, I found this bit online, and it seems to go well with where I am at the moment:
What are my mental, emotional, physical and spiritual needs? How can I nourish each need?
Mental needs: I need my mind to be active... I need to feel challenged. I love puzzles - not like jigsaws, or even puzzle books with two-minute mysteries to solve. I love real life - how do we get kids to learn better? how can we save the political system? How can I tell my boyfriend this? I would love to be an advice columnist. Real world puzzles are great because there is no right answer and there are a million possibilities. This is probably why I've been posting to various internet boards, to entertain myself. So how can I nourish this? I guess continue some with what I've been doing the past few days. I've been doing a lot of education research - and I feel like this theory is fomenting in my mind... something that could become some research experiments... I would like to actually follow through with them and complete the action research with my students. Super bonus would be if I can somehow tie it in to my grad work.
Emotional needs: I need to feel loved and supported - but not smothered. There is a limit to how much I can take of "Are you okay?" and "Is this okay for you?" and "How are you feeling today?" I know people just want to check in on me - but my life is really not exciting at the moment, and to be constantly reminded of it with questions about what I did today is really not helpful. It just reminds me that I'm being lazy and doing nothing to contribute. I also feel myself pulling away a bit emotionally, but I'm really trying not to. I don't know how I can nourish the emotional at the moment, other than keeping my loved ones in the loop.
Physical needs: Well... energy... I just keep working on good nutrition - doing small workouts on the Wii fit when I can. It's ridiculous how tired I get after the most basic yoga warrior pose - but that scares me a little, because it tells me how much rebuilding I'm going to have to do once this chemo is over. I'm going to have think of it like physical therapy... and hopefully I'll be able to lose some weight in the meantime. It would be nice to be back to 200 by next Christmas (it would be really nice by the end of summer, but I don't want to set myself up for failure). For ways to nourish this? Just continue with the healthy eating after the chemo - that will be vital - home made food, without too many preservatives, and keep the exercise going.
Spiritual needs: I feel in flux with my spirituality. The total hysterectomy threw me for more of a spiritual loop than anything that has ever happened to me before... all the deaths, dropping from med school, severe depression... I've survived it all with my spirituality and faith fairly in tact. My life was tripping along so well, and even the original diagnosis of cancer, while devastating, was not what knocked me down. I still felt guided by God... lead to this path... I was being shown what I would end up with... and then I was shown how totally wrong I was. I wasn't being led, because that path was just destroyed. There is no way to get near that path - there is no alternative solution. So, how could I have been so totally wrong? I know people might say, you can't know God... who was I, after all, to be so egotistical to think God would reveal plans to me. How stupid... but see, that was part of my faith - I can't believe in a God that would just have us blindly flailing about and laughing at our failures when we can't figure out which of the cups hides the penny. Life isn't a shell game. And if it is, set up by some great deity, then frankly, I don't believe that deity deserves my faith, praise or anything else. I'd rather be atheist - even if I knew there was a God, I would deny such a God.
But old habits die hard - Literally at Christmas I would have called myself an atheist, but I morphed just a little to agnostic... Of course, I was highly depressed too. For Lent, to support my husband, I gave up sweets for a brief time (you have no idea how hard that is to do when literally the only taste you can taste is sweet - it's not even about craving a cookie!) But, I was a little bitter about it, because I felt it was so stupid I should give up something for a God that I didn't believe in. Perhaps it helped me a little though - I don't know - but I did start praying occasionally again.
They are just little prayers. The first one I'm not sure even qualifies - it was more of a, if you give a shit about me, just let this pain pass... Kind of a self-fulfilling one too, because of course the pain will pass eventually.
Anyway - I feel a little lost spiritually. I don't know if I want to continue to explore with my husband, or if I just need to find my way back on my own. Or, if I just won't find my way back. And I have no idea how to nourish any of that. I know eventually I'll have to start going back to church, because my mom will guilt me otherwise... but it's going to be tough. I like singing, but don't want to sing in the choir songs I don't believe. I don't want to see happy families and little children, because that alone makes me want to burst into tears. It's going to be hard enough being a teacher. I don't want to contribute money to campaigns... I don't mind helping others - that will be the only thing I would get out of church I think, an ability to serve others. I might just have to tell my mom to back off ultimately, because I don't want to spend half of my weekends feeling depressed and crying or feeling guilty.
Well, I guess I can think of one song that still resonates with me... so I'll leave this with a song after all.
I haven't written much as the chemo has started. I was in a rather bad place, as to be expected, but the Zoloft I think has kicked in and my mood has improved. I'm halfway finished - so that's a huge thing... I feel lost in this weird vortex, where life is on hold for me - but it's moving along for everyone else.
It's a strange feeling when one's body betrays you. Logically, I know six months ago I was canoeing two days straight, with little trouble. I'm 32, in pretty good shape, despite the weight issues caused by the medicines. I've actually managed to lose just a little bit of it back (healthy loss, not sickly weight loss). This morning, though, I played with the dog a little - threw her ball a few times up and down the living room, then took her out for a walk (as in walking up and down the stairs, not a walk around the neighborhood) - and then it wiped me out. My joints ache like I'm 80 with severe arthritis.
After a long nap, I managed to do a few minutes on the wii Fit. I'm proud of myself for that. I plan to keep it up - small victories. Now, the task of vacuuming the living room and hallway seems herculean. I look forward to when this mess will be over - and I'm halfway - and hope my body returns to me too - stronger and better even.
So chemo started last week - it's been a whole week now. It was kind of a nightmare, because they couldn't get the port line in and had to put a PICC in, which was painful and awful. Fortunately they took that out Tuesday, but I nearly passed out when that happened. It might have been a hot flash hit me the same time some medicine hit me, but my skin was flushed white except my face that was splotched beet red. Soon after, I found out I'm anemic too, so trying to keep that under control with iron supplements, meat and lots of iron rich greens.
Meanwhile, Tuesday night I had some terrible gas, like a baby who just couldn't burp. After an hour or so of laying still, I finally started to drift off to sleep. Wayne was wrapped around me, but I had an out of body experience. I felt like I was floating miles away from him, just kind of held tethered by some thin strand. I wasn't myself anymore, and I could float away to a place where everything was different... floating backwards maybe and rewind a little over a year, to when I didn't have cancer. Now, being a science person, I'm completely aware that I had the cancer cells well before that, but it's fun sometimes to float into an imaginary world.
I feel rather disconnected from everything now. It's the end of the semester with my current students... normally I would be saying goodbyes and preparing for the next group. Instead I just kind of don't care, because I realize I won't be doing any work while on chemo. I'm so wiped, just taking a shower in the morning makes me feel like the most strenuous exercise mucking in the marsh! I unloaded the dishwasher and walked the dog today too... both quite wiping and now I'm too tired to even go to the couch and get another blanket to pile on top and keep me warm as the snow falls. I look in the mirror and see this alien face. My skin is getting drier, and whiter, and dark circles are appearing under my eyes. More eyelashes fall out everyday, so I know soon enough they will be gone too. I get splotchy and red, and my long hair is gone...
This alien creature has taken over my life, and ruined it. People check on me, and I have nothing to say, because I've done nothing. I accomplish nothing in the day - I get up, I shower sometimes (big event), I eat (another wiping event), I wander to the living room, watch tv, sleep, eat, wander to computer room... wander back... nap... eat... go to bed... Nothing accomplished in a day, and lazy is of course a major sin for me. I recognize I can't help it, and I'm not only still recovering from a major surgery, but also battling a major disease with the help of extreme poisons pumping through my body, but I feel like I'm just floating out of reach, beyond anything substantial, getting more and more disconnected from life and everyone.
My own body betrayed me, so the only thing my womb ever grew was a tumor. The cancer ate at my insides, and the doctors ripped out the rest. I'll never be able to give you the children I wanted to. I'll never have kids of my own. Your ex step kids will always be just yours, and I can't complain when you mention them because I can't give you your own, even though it's a little stab in my heart everytime.
And tomorrow... Well in a few hours they will start pumping tons of toxic chemicals into my body hoping to stop this cancer. It might not work. I might go through all this pain and misery and not even be here next Christmas. And if I were to die, I don't know how you would make it. I have to do all these things, like get the house in your name... And I don't know what you would do without my salary.
And we might not have much of my salary, because it all depends on if people at the doctors get it and write the right things in the blanks to convince the school system.
And I want to be doing something useful and productive with my time, and I do love teaching, but right now I love it very much in the abstract... I get very tired thinking about trying to teach right now. Then I feel I'm failing my students, which is I guess the closest I'll come to "my" kids.
And I don't know if I'm strong enough to do this. Physically or mentally
And I feel like it's all my fault and I'm just a burden to everyone.
And everything is wrong. Plan was that I should be several months pregnant now, planning maternity leave... not cancer. And it's not fucking fair someone can have six kids and never have to worry about her paid maternity leave being approved, but I'm sitting on pins and needles hoping I won't lose months of salary.
So everything is wrong, and you can't do anything about it, but I do like when you hold me.
I feel unprepared. I feel nervous. I'm on the verge of tears at every moment it seems. I'm being short tempered I guess. My stomach is tied in knots, and I want to throw up (though I'm not nauseous).
Tomorrow is the first chemo treatment, and I get the port put in - and I'm so afraid I haven't done everything I was could have or should have. I don't know if I have enough stuff or if I'm taking too much stuff.
And I'm afraid that I'll go through all this and it won't work anyway.
Picked a song from Les Miserables because it's near the part where Fantine sells her hair for 10 Francs to send to her daughter's caretakers...
Which brings me to my haircut pictures. I've whacked it all off... and it's going to Locks of Love. I'll be sending it off Monday.
Here I am the last time with my hair...
Hair up in a bunch of little ponytails to make it easier to cut.
Wayne thought he should do the deed. I think his eyes were a little wet...
This is the Les Miserables pose...
This is all the hair! Lovely hair, I'll be sending to help a child in need.
Wayne shaved it to make everything even - down to a #3 on the beard trimmers.
The final results... not too bad I suppose.
People keep telling me I look cute in short hair. So here's to the future... eventually I know I'll be totally bald, but for now I'll keep the little bit of hair I have left.
I also bought three wigs... I'll have to work on pictures of those. The little Korean lady who worked at the wig shop said "But she don't need wig... she look good."
Watch "Tiffany - I Think We're Alone Now" on YouTube
I feel tired all the time, and yet I can't sleep at 3am! Just going to the store for a couple items wears me out. I don't know how I can go back to school and teach with so little energy, but every one says I should focus on getting better... But I feel like a lazy couch potato, and lazy is a cardinal sin in my book. I want to be able to work again, because it's something I do enjoy most of the time. I also feel like my mind is going, but that could also be the premature surgical menopause. I was reading the lovely side effects of that, including heart disease, increased risk of heart attack and dementia... Because I'm not at a high enough risk for those things!
Meanwhile next post will need to be a hair post. I shaved my head, cut off all the hair and I'm going to send it to locks of love so a kid can get a nice wig. We also bought 3 wigs today. We'll see how I feel about using them. I feel like normal... I almost had this haircut once before in college. It was a mistake but I survived. Hair is just hair... The only emotional part of shaving was that it makes the impending chemo way more real... Everything just feels way to drawn out, like the clock is ticking and the only one worried about it is me, because the hospital is booked up and too bad for me that these days might mean the difference between life and death.
But there is nothing I can do about it, so I have to breathe and try not to cry or worry or dwell on what will happen if I lose this battle. I have to take each day as it comes, and not worry if some days are lazy ones. Every minute counts, but they don't all need to be action packed. So far I haven't won the lottery, so I can't afford to do things that would be on a dream bucket list, or to pursue ways to adopt that only money can provide. I just have to focus on healing, which I guess means doing not much of anything at all that means anything.
