I love you.

August 19, 2008

06:31 pm

Just wanted to stop by for a few minutes to ask all of you to keep Tim and I in your thoughts. It seems that our relationship is coming to an end. It’s by no fault of his, I can promise you. There have been more tears and more moments of pleading between the two of us these last few days than I ever thought possible. Along with that is a lot of love and respect. This is by far the most difficult break-up I’ve ever been through. To me, it makes perfect sense because I want him to be happy and not have to sacrifice, compromise his dreams, or have to wait for me to be able to trust and believe. For him, he simply wants to love me no matter what hand we’re dealt or how long it takes for me to believe that he’s not walking away. I am frustrated that I can’t find the words to make him understand exactly what I’m feeling and he’s frustrated because he can’t find the words that will work to convince me that he’s not going anywhere and loves me. He promised me he’d be happy just making me happy until the day we die and I want him to be happy more than he knows. I’m convinced that I’m not capable of being the one to make him happy. I’m dealing with too much baggage and apparently still mentally worked over and wrung out from the last year. I’m having a tough time being able to find the strength to put myself out there again and be vulnerable. I’ve been through this moment… the one where I am told I’ll never be alone, I’m loved, a real man would stay, and that somebody wants to be the one growing old with me…. I’ve been through it before and I’ve been promised all of it before. In the end I am left alone. I’m still left with the wedding dress from the last time I believed somebody who said that. (Remind me to get rid of that fucking thing….) Everyone I have ever loved has walked away and I’ve got nothing left for anyone to take. I’m hanging on by a thread as it is and everything I have left in me is being used to keep myself alive. I mean that more literally than I’ve admitted to anyone.

Neither one of us knows what to say to each other aside from “I love you” which right now has to be all there is I guess. It’s really tough to go through something like this right now because when you have somthing going on in your life which pulls you apart, you turn to your best friend for support and for help to try and keep it all together. I’m trying to push my best friend away to save him from getting hurt and he’s trying to pull his best friend closer. There isn’t a right answer and I’m not sure where we’re headed. I don’t have any faith left to believe that it’s going to work out for the best or that this is how it’s meant to be. I don’t think that everything happens for a reason. I think somebody made that up to get somebody else to stop bitching.

Anyway, keep us in your thoughts while we go through this, especially Tim. He’s given up a lot for me and I’d go through a lifetime of cancer, chemo, and all that comes with it if it meant that he’ll be ok. I will always love him immeasurably and forever, no matter what.

On Hold…

August 18, 2008

02:41 pm
I’m sorry that I haven’t written here lately. You’ve all been kind enough to share your love and support and I’ll try and do better with updating this site more often.

I haven’t had much to write about to be honest with you. I had been in a holding pattern of sorts for a bit thanks to some other stuff going on. Now I find myself just days away from surgery. On Friday I will be having a double mastectomy , a hysterectomy, and a procedure called a prophylactic salpingo-oophorectomy. This is a totally fancy medical term for the preventative removal of my ovaries and fallopian tubes. Because of my genetic and family history risks and prior medical issues, this was decided to be the best option for me. I initially had decided to hold off on the hysterectomy and oophorectomy portion of the surgery so that I would be able to have biological children and I even sought out the advice of two fertility specialists to find out what my options were at this time. It turns out that I really have very few options which would make sense or be responsible for me right now. The right decision turned out to be to take care of my health. So… I will be having everything done on Friday.

I’m having a tough time emotionally. There are so many thoughts going through my head. The biggest one is that any physical attributes or characteristics of a woman will be gone on Friday for the most part. I always thought of myself as being fairly girly despite the fact that I wasn’t exactly blessed with big breasts. I think I tried to compensate for my lack of boobs with longer girlie hair and feminine clothes. Now even my hair is short. I cut it in anticipation of the chemo. I have the locks they cut off in a bag on my dresser. I was supposed to send it in to Locks of Love but I just haven’t been able to bring myself to do it yet. I took them out of the bag and looked at them the other day. I don’t know why. All it did was made me cry.

I will be… an it. I won’t be able to have children. I won’t be able to breastfeed. And thanks to the assault last year… let’s just say that relationships aren’t exactly my strong point and let’s not even get started on the topic of sex. I’m trying not to mourn the loss of being able to have biological children. I don’t even know if I want children because I’ve technically been raising one for the last few years. I just would have liked to have had the option. I have been told more than once that my chances of adopting are slim thanks to my medical history. My Mom quotes a line from Steel Magnolias when I bring that up. She says, “We’ll adopt. We’ll buy one if we have to.” I love her optimism. I try not to remind her that Julia Roberts dies in the end.

Despite all this sadness, part of me is relieved to start this whole process of getting better. For two months, this cancer has been eating away at me and I want it gone. I hear it in my head like a ticking bomb and I just want that to stop. I am well aware that the next few weeks and months will be unpleasant. I’ll have a few weeks to recover from major surgery and then it’s time to start chemo.

Somebody asked me why I’m having chemo if all my “parts” will be gone anyway. It’s more of a preventative measure. Because of the type of cancer, my age, and the location… they don’t want to find out a few months from now that they missed something and I don’t want that either. I’ll have six rounds of really nasty chemo and then hopefully I will be able to say that I’ve been through the worst and find my way into remission. You’re never really cured of cancer. The doctors are always careful to remind me of that.

I will be spending the next few days preparing myself emotionally, physically, spiritually, and mentally for this fight. The first step is that my house is clean. We’re talking spotless. I don’t think it’s been this clean since I moved in. Jill surprised me on Friday with a “subscription” of sorts to a cleaning service. They’ll come in once a week to dust, mop, vacuum, and disinfect. I don’t like the thought of people coming into my home to clean because I’m picky but something told me to swallow my pride and that I probably will be grateful for the help. Plus, it was given with the best of intentions by the best friend a girl could ask for.

I’ve started a semi-macrobiotic/vegetarian diet. I’ve never been much of a meat eater so it’s not that different except that I know I have to be careful to get all my nutrients and iron. I feel less tired so far so maybe it’s helping. I slipped today and had a peanut butter and jelly sandwhich but that was out of laziness. I don’t know how long I’ll realistically be able to keep it up because I won’t feel like cooking my own meals or probably eating much at all. I’m planning a trip Outpost Foods and Whole Foods on Wednesday to stock up on things that I can make easily or have somebody else make for me without too much trouble.

I started meditating recently, too. It happened by accident. I was sitting on the floor of my room, cleaning out some dresser drawers. As I sat there, I felt my body relax and realized that I was feeling quite comfortable. After closing my eyes and taking a few deep breaths, I felt so peaceful. Since then, I’ve taken a few minutes out of each day to put on some soothing music, light a candle, tune out the rest of the world, and find my peaceful little spot on the floor of my room. I try to think of good things and I picture myself feeling healthy and recovered.

Spiritually, I could use some work. I’m still feeling quite angry and my faith isn’t very strong compared to what it used to be. One of the toughest things is that my pastor retired last month and because of stupid rules that neither of us likes right now, we’re not allowed to have contact. They say (they being the denomination) that it would interfere with the progress and healing of the congregation and finding a new pastor. I miss him dearly and I think that rule sucks. I continue to go to church on a regular basis and I try to stay active. My church family has been very kind and supportive, which I’m grateful for. I have it on good authority that the little old lady sunshine committee is spending the weekend cooking a bunch of stuff for me that I can just warm up as needed. So much for eating healthy.

I try to have conversations with God, but when I do it feels like I’m in a big empty room and my own voice just echoes. I try to remind myself that He is with me and I need to trust in that. It’s tough when I don’t think I’ve ever felt so alone in my entire life.

I’m going to stop writing for now. To say that I’m emotional is an understatement and it’s times like these when I’m grateful to have Lucy. All I have to do is grab the leash and she knows that it’s time for a walk.

I don’t know that I will have time or be able to write between now and Friday. My Mom has the log-in for this site and I’ve asked that she update it when I am not able to do so. I will make sure that she lets you all know how I am doing on Friday and the following days.

I love you all and thank you for your thoughts and prayers. They mean so much to me, as do all of you.

Now What?!

July 16, 2008

01:49 pm
So now that I’ve had 24 hours for it to sink in slightly, I am thinking more rationally. Maybe. Last night was a really rough night. It wasn’t pretty. I finally took a sleeping pill at 5 a.m. Restoril will knock you on your ass, btw.

I called my aunt this morning out in D.C. She battled Non-Hodgkins Lymphoma a decade ago and since then has used her job in PR to work with a lot of cancer organizations. I updated her on my visit with the oncologist yesterday and she suggested that I get in contact with the Cancer & Fertility Society. I called them and they are getting me the name of a specialist here in the Milwaukee area. I want to talk to them so that I know for certain what my options are. I might be able to go through egg harvesting but that will most likely delay my treatment. I just need to know if there is anything I can do in case I want to have biological children in the future. I need to find out so that I don’t regret not taking the time to do so later on.

I’m also doing a lot of reading regading reconstructive surgery, chemotherapy, and menopause. Regarding the menopause, I consider this payback for all the times I’ve made fun of my Mom and her hotflashes.

Chemotherapy scares me. I hate throwing up and I’m definitely not ok with losing my hair. I’ve already decided that I’m going to go get my hair cut really short and let them use my hair for Locks of Love. And then as I go through chemo, I’ll already have gone through the hard part of getting used to not having long hair. There won’t be that much to lose. =/ I think Tim should shave his head the entire time I’m going through chemo. We’ll be the hottest looking bald couple EVER.

I’ve also been doing research regarding medical marijuana for use during chemo. The jury is still out on that one but I’ll be honest and tell you that I’m considering it.

That’s about it for now. I’m waiting for my doctor to call me back with the name of another oncologist that I can see for a 2nd opinion. I’ll update here again when I have any news.

BRCA Positive

July 15, 2008

03:43 pm
I had an appointment with the oncologist today. It was to go over the results of my genetic testing and the MRI which I had done last week. The results were not what I was hoping for and despite being prepared for them as best I could be, I’m quite upset.

First, the MRI showed that I have not one tumor, but two. There is another really small tumor near the first one.

Second, I do have the BRCA1 gene.

To make a long story short, my oncologist is recommending a double mastectomy and the removal of both my ovaries and fallopian tubes. This will put me into menopause and I will not be able to have children. In addition, she is recommending 3 months of follow-up chemo and five years of Tamoxifen, a drug which should help limit my chances of having cancer again.

As you can imagine, it’s a lot to take in. I’m angry and I am sad. I’m scared. I’m going to be getting a second opinion from another oncologist. I don’t anticipate the recommendation to change, but I want to hear it from another viewpoint. At that point, I will be meeting with the surgeon to schedule whatever surgery I will be having.

The next step (other than a second opinion) will be having a port-a-cath put in. This will eliminate any needle pokes I’d need into my arms and will make chemo easier to administer.

I wanted to write all this stuff down because it’s really making my head swim. I am trying to somehow understand it all and handle the fact that I’m going to lose my breasts, my hair, and not be able to have biological children. Seeing it written down… having me actually write it… is making this suddenly so real. All too real.

Sunrise

July 11, 2008

05:58 pm
I saw the sun come up this morning. It was the most beautiful sunrise I’ve seen in a long time. It was bright red and pink. I don’t think sailors liked it, as I recall a saying something like… “Red sky in the morning, sailor’s warning. Red sky at night, sailor’s delight.” This was definitely red. I stayed up all night, as I just was not tired. I played some WoW and then sat out on the patio. I listened to the sound of my windchimes blowing around in the breeze, and watched the sun slowly rise. Lucy slept at my feet, dreaming as she often does. As the darkness changed to day, the birds woke up and sang to each other, welcoming the new day. This is how it should be. While I could not sleep, I did find a few moments of quiet and peace. My head did not rush around from one thought to another. It was lulled by Lucy’s breathing and the music from my windchimes. The singing of the birds foretold the coming of the dawn, long before I could see the first light of day. They knew. They instinctively knew that it was time to push on and do what they were there for. Happily, they chirped. And then… the rose blush coming from the horizon… so slowly. It was as if a warm blanket was being pulled over the sky to get rid of the chill of the previous hours.

Insomnia Strikes AGAIN

July 9, 2008

04:20 am
I can’t sleep. As much as I’d like to just crawl into bed and drift off, I just can’t. A while ago, I was looking at some pictures of myself on MySpace. As you know, I love taking pictures and I have a lot of pictures of myself. The reason for that I’ll explain another time. I was looking at these pictures and seeing how much I’ve changed in the last year. I tried to pinpoint when I might have gotten sick. There are moments where I look so tired and think maybe that’s when. But other days I look like I’m having a good day. And since I have some pictures within the last year that make me look like I’m having a rough day for an entirely different reason than cancer… I can’t pinpoint it.

I made the mistake of looking at my hair. It’s grown a lot and even though a lot of it got cut off during the assault last year and hacked in the back, I had more layers put in and it has grown back really well and really fast. I started looking at my face and I suddenly saw myself without hair. I saw myself completely bald and without eyebrows. I saw myself in the middle of chemo.

I suddenly felt sick and started to cry. I don’t know why I put myself through this. I don’t even know that I’m going to have chemo and I’m already worried about it and how I’ll look. I seriously think that all this waiting to find out how bad this is and what the treatment will be is making me a nervous wreck. I certainly don’t like what cancer is doing to me physically, but I don’t like what it’s doing to me emotionally either.

It’s 4:30 in the morning and I’m wide awake, sick to my stomach, and trying to stay strong.

MRI Day

July 8, 2008

03:55 pm
I had my MRI today. This was done to determine if there are any other tumors hiding somewhere that we don’t know about. The actual MRI went ok, although I have to admit I now don’t like needles. I’ve never had problems with needles before, but today kinda grossed me out. I mean, I’ve never been thinking, “YAY! NEEDLES!” but I’ve never had a problem with them. They injected dye into me through an IV so they could figure outo what was going on a little better. The grossest part was that my arms had to be above my head the entire time I was in the MRI machine. I was face-down so my arm where the IV was got placed next to my ear and I could hear the dye going through the IV the entire time, even though the machine was loud. And did I mention uncomfortable? I’ve had MRI’s before so I expected the loud part but being on my stomach with my arms above me made it really difficult to stay still. They kept telling me not to breathe so deeply but I couldn’t help it. The way I try not to freak out and stay relaxed is with meditation and what I call “Square Breathing”. It’s where I inhale for 4 seconds, hold my breath for 4 seconds, exhale slowly for 4 seconds, then hold my breath for 4 seconds. I keep repeating that and in my head I might repeat a phrase or word. That little trick has helped me through many an axiety attack. Anyway, I couldn’t do that and had to go with shallow breathing, which I hate. Meanwhile, the machine is so loud that you have to wear earplugs, and I hate having things stuck in my ears. Then, it vibrates your whole body. So here I am trying to stay still through all of this and trying not to breathe, and trying not to move. It made it difficult to stay calm and focused, but thankfully I had plenty of good thoughts to focus on. Tim and I had a great talk last night and I thought about that for a while. Then I thought about all the love and support everyone is sending me through their prayers and thoughts. I imagined that each thought was a beam of light and as they all reached me, they formed this shield of light around me and surrounding me with peace and love. I know, it sounds very new-agey but it really helped. I finally relaxed for the last set of images and probably could have fallen asleep if it weren’t for the noise.

So… what next? Well, I have an appointment with the oncologist a week from today. At that point, the genetic tests will be in and the MRI results will be in. She and I will go over everything and I will know at that point what kind of treatment and surgery I will have. This waiting and not knowing has been so frustrating but I know that everyone is doing what they can as fast as they can. And I know I’m not the only person in the world to be diagnosed with cancer and going through treatment, so I’m ok with being slightly patient.

After I meet with the oncologist on Tuesday, I will make an appointment with the surgeon and we’ll go over everything and schedule the surgery. The surgery doesn’t scare me. It’s what happens after the surgery that I’m worried about. But I’m going to do my best to not worry about that or think the worst. And no matter what I have to face or what I will have to go through, I know that I’m not going to have to go through it alone. Even in this battle with cancer, I am blessed.

Insomnia Strikes

July 7, 2008

02:54 am
I can’t sleep. It’s so warm and humid right now and I just can’t get comfortable. I’m a bit sleepy but when I lay down, my mind just races at a fantastic speed. I wonder if part of the problem is that I’ve started to sleep when I’m tired, no matter what time of the day it might be. I’m tired more often than I was a few weeks ago so I make a point to take a nap when I need one.

I’ve also had to start eating differently. For some reason, my body has suddenly developed a love/hate relationship with food. I’m sure it’s because of the stress. It definitely does not like red meat or anything greasy. I can eat small amounts of chicken and fish, but I’ve mainly been eating rice and pasta dishes. Cereal and those Carnation Instant Breakfast drinks have helped me through the last few days. I wonder if this is what it’ll be like if I have chemo….

I have my hair in two pigtails right now, one on either side of my head. My hair is so long that it’s still half-way down my back. I keep thinking about what it would be like to lose my hair. I know I shouldn’t dwell on things like that, but I can’t help it. It’s random things that pop into my head and I think about it. I was in the shower today and I was thinking about this really cute dress I saw in a magazine. It suddenly hit me that if I have to have a mastectomy, I probably wouldn’t be able to wear it because my scars would show and it certainly wouldn’t fit right. I never realized how vain I was until now.

Don’t get me wrong… I dwell on the big stuff just as much. I worry that as I’m waiting for these tests to be done and the results to return, this cancer is spreading. I worry that I’ll lose both my breasts and have to have a hysterectomy. I worry that an inability to have biological children would cause Tim to reconsider our relationship. I worry that Tim’s going to get here and either hate it here, or things are going to be really rough and it’s just going to be too much to ask him to go through. I worry that when the surgeon does the surgery, he’ll find that it has spread into my lymph nodes. I’m worried that my anger and recent lack of faith won’t just be a temporary thing. I worry that after all of this is done, I’ll have lost my battle.

I have plenty of time to be negative and worry. And yet I have plenty of people who love me and who do their best to reassure me. I had a friend tell me tonight, “I won’t pretend to know what this is like for you or that I understand what you’re going through. All I can do is hug you, tell you I love you, and be here for you any way that you need me to.” I guess I just need to find a way for that to be enough for right now.

Fourth of July

July 4, 2008

04:13 pm
It’s July 4th. I went out last night and watched the local parade and fireworks with some friends. It was so cold and damp that I couldn’t warm up afterwards. It took a hot shower, some warm jammies, and some tea to warm up. I initially didn’t want to go because of the mosquitos and crowds, but I’m glad I went for the most part.

A few of us wanted to go to the Brewers game today and I got excited at the idea of sitting in the ball park and drooling over… er… watching J. J. Hardy and Ryan Braun. But the game was sold out and it looks like the games for the entire weekend are sold out. So, we decided to grill out and hang out tonight. I know that a few people have fireworks to set off, so if we don’t end up drunk and blowing up each other, it’ll be a good night.

I noticed today that I am definitely more tired. I needed a nap so I wouldn’t fall asleep early tonight. I was falling asleep during lunch. I will have to ask my doctor if this is because of the cancer. I supposed this is something I will have to get used to… being tired.

I hope that all of you have an enjoyable day. As I was watching the fireworks last night, I wondered if I’d be around to see them next year and with my entire being, I said to myself, “Yes.”

The Afghan

July 3, 2008

11:42 am
Next mood swing… 42 seconds.

It’s amazing how acts of kindness can make everything ok. I received a package just a few minutes ago from Tim’s Mom. Inside this gigantic box was a stationary set with what looks like lilacs on it (one of my favorite flowers…. Oh how I wish mine had bloomed this year!), two pillowcases which she beautifully embroidered with butterflies, two cards she wrote wonderful notes in (I think I love her even more after seeing her handwriting), and an afghan which has left me feeling so loved and overwhelmed. It’s huge! She used different shades of purple (my favorite color!) to form this cozy and very girlie afghan. It’s woven out of little blocks and has a scalloped edge. When I think about how much time and love went into this… I can’t help but feel so blessed and tear up. I took a picture of everything and will post it on here in a moment. I’ll take a picture of me curled up with my afghan one of these days when I don’t feel so blah. Although I know that the days when I feel oh so VERY blah, this afghan will be the first thing I reach for.

Something I’ve been staring at for a while now is a passage from Ecclesiastes at the bottom of one of the cards Tim’s Mom sent me. It says, “To everything there is a season, and a time to every purpose under the heaven.” She very knowingly underlined all the right words. Every purpose. There is a purpose to all of this. I have to keep believing this.

I think I have discovered one of the ways I’ll get through this…. It is in these moments of kindness and thoughtfulness which will make me realize I have so much to keep fighting for.