Back to Being A Member of Society

I'm back to interacting with the world rather than glimpsing it through my bedroom window. I'd say I'm feeling 95% of normal - give or take being in horrible shape and getting winded just walking a block or so. I must say I am delighted to be back. I'm not sure the world missed me or even noticed I was gone for the past four and a half months but I sure missed it. Remember the sushi dinner with friends I was looking forward to? I've had two of those now and they were worth the wait. I've had a friend staying here for the past two weeks and it was great for me. We went out, we had friends here, we stayed up late, we talked and talked and talked, we watched movies, we ate lots of cheese (mmmm cheeeeese), and best of all there was lots of laughter. Ah - to be normal again! Phoenix this weekend was a nice break too. I've never lived in a city unless you count Champaign or Toledo. I practically twist my neck out of shape looking around at things and people watching. We got pedicures. I even agreed to having flowers put on my big toes. It has been forever since I've felt even close to girlie so I am smiling at my flowered red sparkly toes right now. I've got all sorts of new hairs growing in on my head. They look pretty dark but that's OK. I've glimpsed one pretty light one sticking up on the top so there might be some grey coming in. The old Linda would have probably plucked it but at least for now every hair is sacred! Another chemo strange thing - my fingernails have four white stripes across them - one for each treatment. Odd. Oh - and I've got a few eyebrows coming in also. I was watching a Travel Channel show on the southwest tonight. Man are there some great places in this area to explore - not to mention the big ditch in my backyard. I can't wait until January to get started. I think that's about it for random thoughts for tonight. It's nice to be back - back home and back to Linda.

Finally - I Am The Wild Rebellious Sister!

I now have FOUR tattoos - that's three more than both of my sisters combined!

.

Radiation Simulation Day is over. I got there at the appointed hour and to get to the radiation waiting room I had to pass the chemo room. I didn't want to look into it and bring back bad memories but then I had to when I heard the noises that were coming from it. It sounded and looked like a party was going on in there. All of the chairs were full with people that actually looked healthy - there was a movie playing on the big screen TV and there was talking and laughter. I get homeless looking chronic coughing guys with me on Tuesdays (and they were very nice to me). No one told me that the cool kids get chemo on Fridays. It almost made me wish I was in there with them. HA - just kidding. I skipped past the room glad it wasn't me and wishing all of them the best.

.

I met with my radiation oncologist next. She had all sorts of good news for me. First of all instead of the 30 sessions I was planning on which would get me finished right at the end of the year. (Thereby I would avoid having to pay my deductible and co-insurance payments in the new year plus to top it off my company is changing insurance companies at the end of the year.) I will instead have 33 sessions. 33?! Who comes up with this stuff. Anyway, no matter how I try to count the days I won't be finished in 2008. Secondly she told me that I can't take baths during treatment. Oh heck - that one hurt. I do love a good bath. Then to top it off she tells me that they not only aren't open on Thanksgiving or Christmas, they aren't open on those Fridays. Which you wouldn't think was so bad but instead they are open the Sunday before. Which means I can't go to California on December 20th for my friend's Christmas party. And I was really looking forward to going to it and seeing the ocean and having some laughs with them and their great friends. Did I mention the great food and drinks?! And then there were all the fun side affects of radiation - such things as cracked ribs, lung problems, skin cancer. I signed another release to let them hurt me to save me and she sent me for the simulation.

.

I was shown the radiation dressing room which has robes and lockers. I'll start here each day and change into a smock and a robe. I was told I would then go sit in the waiting room. I will not need to check in with anyone since there is a camera in the room and they can see that I am there and will come get me when they are ready. That explains the picture they took of me way back in August when I had my first appointment. I look a bit different now so I hope they recognize me and I don't spend hours there waiting every day.

.

It was then on to the simulation. They laid me down on a table and took a CT scan. I wasn't allowed to move but it didn't take long at all as they sent me through a machine that looked like a large very expensive donut with all sorts of cool red lights. I then got to stay laying there in a freezing cold room as the oncologist decided where I needed to be marked with my tattoos. They didn't hurt too much except for the one right on my sternum. That one really stung. But now that I have been through chemo there is nothing they can do to me that hurts ever again.

.

We (me and the folks that just tattooed me) tried to figure out my daily schedule. I hope to go late on Mondays, spend the night in Flagstaff, and then early on Tuesday. Then I will go mid-day Wednesday, Thursday, and Friday. I figure it is the warmest part of the day and if there is snow the plows will have already been around plus i avoid driving in the dark. Right now I start next Tuesday at 3pm and then we will figure out my schedule for the rest of the time. When I told the oncologist my plan she thought it was a bit too ambitious and thinks I'll end up staying more nights to avoid all the driving (3 hours round trip). She said I could try my way if I was open to adapting the schedule if I got too fatigued as we went along.

.

I then was sent over to the main hospital for a blood draw and a pregnancy test. I was sitting in the waiting room wearing my tan hat when a young bald kid around 9 years old came in with his mother. I took my hat off and he cracked up at my bald head. We bonded over how silly we looked and how much chemo sucks. His Mom later told me that he had been in the hospital for awhile now and that his prognosis wasn't very good. Sorry - I have nothing on David, he's the brave/strong/positive/inspiring one in this story. In his shoes I would be a crying wreck but he is up walking around in his rocket ship PJs and laughing with the funny looking bald lady and making her day. What a great kid.

.

Finally I got a nurse who could find one of my veins on the first try. She asked if a student could try to get the blood first. I used my new mantra - I've been through chemo, nothing you do can hurt me now - of course he can try. He felt all over the place for a vein and couldn't feel one. He gave up on me. I told him to try anyway but he just shook his head, he let the expert stick me with the needle. Even she asked if she could try the other arm to see if there was anything better. I told her there was but she could not use it. Just my luck I get breast cancer on the side with my "good" veins.

.

I then returned for a few hours at work. And now it's the weekend! I'm going to Phoenix tomorrow night to hang out with a couple of friends. I haven't been down there since I moved to Arizona so am looking forward to that and a nice "normal" weekend! I hope all of you also have nice normal weekends.

What Time Is It?

Seriously - because I have no idea. I have lost all sense of time. During the day at any given time I can't tell you if it's morning or afternoon without having to think about it or look at a clock. For some reason every day is Tuesday to me. I keep dating things as 2006. And the worst surprise of all is that this is November. At least ten times a day I look at the calendar and am shocked to see it on November. Every. Single. Time. To me it is still August. I have no idea what happened to the last two and a half months. I want summer and fall of 2008 back!

.

Tomorrow is my first day in the radiation side of the building. I'm actually really nervous and kind of wish I wasn't going alone. I guess it's just that nothing new lately has been any fun. Silly, huh? By this time next week I'll be a radiation expert and probably bored with it too.

The Next Step - Radiation

“I only went out for a walk and finally concluded to stay out till sundown, for going out, I found, was really going in.” - John Muir

.

Most of you know I love to hike, explore, and wander. If I'm out hiking somewhere new it's hard to get me to turn around and head home. I want to just look around the next bend, and the next bend, and the next bend; well you see how I am. There is always something new to see and experience. Who knows if I'll ever be this way again - I don't want to miss anything.

.

I'm finding I don't have the same wanderlust with this cancer journey. I really would prefer to not see what's around the next bend and I couldn't care less if I miss anything. There have already been a few bends in this adventure - mammogram to biopsy to diagnosis to lumpectomy to port insertion to chemo. Seriously not a fun one in the bunch. Pretty soon I start yet a new bend - radiation. I'm tired /bored/uninterested of/with/in this cancer thing at this point. This Friday I have an appointment with my radiation oncologist and then a radiation simulation. I start the actual radiation on Monday. Then it's six weeks of daily trips to town for a total of three hours of driving every day. While I'm not looking forward to it I know I just have to get it over with. Barring any snow days and hoping they are open the day after Thanksgiving - I should be finished on December 30th. Then I'll be finally done and the Lord willing there will be no more cancer bends to dread. I can go back to my "let's just go see what's around that bend before we turn around" explorations. And I'll never look back.

.

One good note - the snacks are better on the rads side than the chemo side of the cancer center.

I am a frayed and nibbled survivor in a fallen world and I am getting along. I am aging and eaten and have done my share of eating, too. I am not washed and beautiful in control of a shining world in which everything fits, but instead am wandering awed about on a splintered wreck I've come to care for, whose gnawed trees breathe a delicate air, whose bloodied and scarred creatures are my dearest companions, and whose beauty beats and shines not in its imperfections, but overwhelmingly in spite of them, under the wind-rent clouds, upstream and down.

- Annie Dillard, Pilgrim at Tinker Creek

The Coyotes Are Howling Tonight

It sounds like they have the house surrounded. What a cool sound. The neighborhood dogs are joining in. When we first moved here Maddie would bark along but she learned that they never showed up to play with her so now she just rolls her eyes and goes back to sleep.

.

So, I am back amongst the living. This last chemo sent me for a loop. I spent Thursday night through Tuesday morning pretty much bed bound. I did go out for the BEST strawberry milkshake ever on Sunday but later that night the pain really hit. I went to work again on Tuesday and don't plan any more sick days - at least for chemo. I am still a bit sore, seem to tire very easily, and have a cold / cough that I can't seem to shake.

.

My eyebrows held on strong but the last of them fell off over the weekend. My eyelashes though are still 80% there!

.

I think we had close to 100 trick or treaters at the house. Maddie and I were in the bedroom but the door bell sure rang a lot. Mom had to make up some extra candy handouts.

.

Once again during the worst of the chemo weekend I had all sorts of trouble sleeping. So, I read instead. I started and finished eight books. It helps me enormously to have my mind somewhere other than this bedroom. Most chemo weekends I leaned towards fiction. This time it was mostly adventure non fiction. I read a book about a lady who walked across half of Australia with four camels, I read about an all female trip up Annapurna in the 70s, there was a book about two ladies who traversed Antarctica, the always interesting book about death in the Grand Canyon (not a cancer death in there!), a book with short stories from Colorado river boatmen, and the book I am just now finishing by the guy who hiked from one end of the Grand Canyon to the other under the rim. I think I am ready to get out there and have my own adventures!

.

I keep meaning to post on this blog. I know there are a few of you keeping up with my progress through it and you worry when I get too quiet for too long. Chemo just seems (seemed) to take away my ability to not only write coherently but the will to write at all. Now I am just so stuck in my own head and I don't want to be. And I don't want to even give a hint of how low I went mentally. I am disappointed with myself. I want to be able to explain it without too much drama but I want to be realistic about it. Each day I feel closer and closer to normal for longer and longer periods of time. I'm sure in a few days or weeks I'll have a posting with all sorts of thoughts about chemotherapy and my experience with it. Until then I am just trying to find my way back to Linda.

.

And I so hate being bald.

It Is Finished

Well there was no big celebration to send me on my way. The nurse did do a "chemo is over" dance for me and made me join in. We also went out for a yummy lunch of seafood Mexican. And I was definitely not heart broken to be walking out of the chemo room for the last time (the radiation side of the building has better snacks). I do wish I could say I am super happy tonight but while I am glad to be finished, the heinous hiccups from hell are already here to make sure I know what is coming. I'll be super happy after the weekend - or soon after.

.

The meeting with the oncologist went very well. I had perfect blood work yet again. He says he will be the the doctor I'll be seeing for the next five years. He put me on Tamoxifen starting tomorrow. I'll start the radiation treatments in three weeks. I can get the port out in three weeks also! And he used the word "cured".

.

I was really worried about the cost of the Tamoxifen since I will be taking it daily for five years. We got the presciption filled today and with my insurance co-pay they are only $15 a month. Yippee!

.

Did I mention I can get the port out in three weeks? And that my treatments should be finished by the end of the year? That my hair should start growing in four weeks? That I only have one more bad weekend ahead of me? That I can afford my meds? That despite all my misgivings wondering if I had the strength to get through it - that I had my last chemo treatment today!?!! OK - maybe I am super deliriously happy tonight! I at least feel pretty proud of myself. Tonight I feel like there is nothing I can't handle.

I Can't Sleep

Probably my own fault for going to bed too early. I'm lying here trying to be apathetic about the day. If I start thinking about it I get either really excited (hair!) or a little teary eyed (this weekend is going to really suck). I feel like there should be a big party or something after they yank the needle out but today is just the beginning of the end. I'll wait a few weeks for the party. I do wish that the end of chemo was the end of this adventure and I could just ride away into the sunset. I know it's going to be the hardest part of my cancer fight for me physically and hope it is the hardest part mentally. I have a bunch of questions for the oncologist this morning. Mainly - when can I start radiation, when can I have this stinkin port taken out, and when should I start taking Tamoxifen. I'm not even sure which doctor I'll be seeing in the long run. It's five in the morning out here and I can hear Dad out there starting a woodstove fire this morning. I know my parents are looking forward to the end of chemo as much as I am. Other than that first horrible weekend they have been here right next to me during the worst of it seeing me at my worst and maybe a little bit of me at my best. It could not have been easy for them and I appreciate it more than I could ever express. And thanks to all of you for all the uplifting emails and cards and prayers sent my way. Seriously this journey would be so so much harder without all of you with me. I hope I can make it up to all of you someday. Guess I should get up and give Dad some company. I do love a good fire. I hope all of you have a great day.

Hi

Sorry I haven't posted in awhile. I'm kind of just letting the last post stand. I'm ready to be done with chemo and at the same time dreading what's coming. My parents get here again tomorrow and we will give this thing one last try. I haven't quite recovered from the last treatment yet and seem to have picked up a cold I can't quite shake. I'm hoping that this one isn't any worse than the others. I won't enjoy it but I'll be able to handle it.

.

I did have a fun weekend though. I had some friends visiting and my face still hurts from laughing so much. Thanks Girls and Boy! Laughter really is the best medicine.

I Am Exhausted

And not just physically.

.
It gets harder each morning to make the decision to be happy and positive during the day. And then once that decision is made, it takes me an alarmingly amount of effort these days to follow through on it. There is no reprieve from fighting cancer – at least during chemo. It is an huge physical and mental effort for me every second of every day. There is always something hurting or feeling very wrong and for me it is taking a huge mental toll. If cancer is not what I am thinking about at any given second, it is affecting what I am thinking about - either consciously or unconsciously. It’s almost easier when “I am fighting cancer” is right at the forefront of my thoughts because when it is not, it comes crashing back pretty quickly. “Yeah – I’d love to go on the trip! Oh wait I can’t right now, maybe next year”. "Let's buy candy for the kids that come by trick or treating, oh darn it that's three days after chemo I'll be curled up sick in bed". I’d give anything for just a short cancer vacation. I want to feel normal. I want to look normal. I want to think normally. And I want to do something normal while feeling/being/looking/thinking normal. It just sounds so normal. I smile and get all misty eyed even thinking about it. I know it’s a cliché but by golly when I am “cured” I am not going to take the good things in my life for granted ever again. Seriously. Like being able to breathe easily. Or having a bad hair day. Or going on a walk around the block with Maddie. Or the drive to work. Or losing my keys. Or going to the Post Office. Or phone calls from telemarketers. Or having a weekend off and not spending it in bed in pain. Or the breeze through the tree tops. Or just sitting on the edge of the canyon watching the sunset. Or, or, or and more ors. How about having a sushi dinner out with friends and being able to afford it? Now that sounds like absolute nirvana! - with a glass of wine! Yeah – I am close enough now that I can practically smell the chemo finish line. If I can just hang on for a few more weeks..... How will you recognize me in mid-November? OK – rather than I’m the only bald girl in the area? I’ll be the one with the big grin on my face.

.
Until then I can’t wait for the day when I don’t have to make the decision every morning to be happy and I just am.