Callback

Callback from my Oncologist NP confirmed that the pain I’ve been having is normal and typical. Monday/Tuesday were the days when my bone marrow was at it’s most vulnerable and that can apparently lead to pain and related issues in my bones and joints. She’s refilling my pain pill meds and said to let them know if it doesn’t continue to improve.

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I haven’t called the supplemental insurance people. Because I just don’t have the energy for the argument right now.

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Going to get dressed, and go see my family to collect some love. Then come back home and go back to bed until I feel better. Because… well, that’s my life right now.

Chemo Fog

That moment when you suddenly remember you’re waiting on a decision for a supplemental insurance claim and check their website…. and now you can’t sleep because you’re so pissed that it was declined that you may have to wait up until their phone lines open to give someone a piece of your mind.

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There is absolutely, positively, ZERO reason for my disability claim to be declined. The ONLY requirement when I signed up… was that you were out of work for 14 days at least in order to qualify. Guess what bitches, it was after the waiting period, and I’ve been out for months. You owe me $3600.

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The fact that I completely forgot about it in my chemo fog doesn’t change the fact that it was a totally valid claim that you have no valid reason to deny. I can’t WAIT to hear the explanation on this.

What to Worry About

I’m in too much pain to bead. But I’m too hopped up from being in bed for like 2 days to lay back down and try to sleep either.

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It’s too early to take another pain pill (those are going really fast by the way… erm…)

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I don’t know what to do with my time right now.

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And dammit if my left pointer finger isn’t decidedly numb. Am i really supposed to call up to Simmons and say, “hey remember how I’m supposed to tell you about any synesthesia? I have one single solitary numb finger, does that count?”

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I feel like an idiot. Back to not knowing what’s a problem and what’s not, what’s a big deal and what’s not.

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I think I’ll wait on the numbness thing. I mean, it’s just one stupid finger right? It’s not even the whole finger that’s numb. Just the top… top to the first knuckle. No fevers, no rashes.. just the excruciating pain… and the one numb fingertip.

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I DON’T UNDERSTAND WHICH THINGS I’M SUPPOSED TO WORRY ABOUT.

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/freaking out.

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don’t mind me.. just.. having a moment.

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Maybe me and my numbdumb finger should go back to bed after all.

A Couple of Good Hours

Heard from my gran today who confirmed several of her friends who have done chemo… have had issues with the kind of severe body pains I’ve been dealing with. She said for her friends, it was a matter of a few days and then things settled back down.

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Had a couple of good hours today so I managed to get a little beading done. But now pain is back so I’m headed for a pain pill and back to bed.

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But, a couple good hours today is more than I had yesterday or Sunday so… yay.

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Otherwise, still having taste issues.. oh and.. while my hair hair is still fine… I am losing eyebrow hair, lashes, and pubes. Because… yeah….. wtf. Guessing my head hair is going to be next at some point but for now… it’s all the extra hairs that i wouldn’t even notice otherwise.

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Guess there are pluses to not having anyone to have sex with. Nobody to notice my odd hair-shedding. Chemo side-effects are fucking weird.

How to Deal

I honestly don’t know how to deal with how much pain I’m in right now. I took another pain pill but my knees and my shins are still just… excruciating.

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I finally looked up side effects and it turns out the Paciltaxen (sp) does cause 2-3 days of arm and leg joint pain. Which is swell to know except it doesn’t actually make it hurt any fucking less.

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Not that I didn’t before, but having a whole new level of respect for people who live with chronic pain. I have to think this will actually go away at some point- but seriously, on my second full day of just…horrifying pain and I can barely think much less function.

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I don’t know how to deal with it. I just don’t. I can’t THINK. My whole body just hurts so so much, it doesn’t even feel like mine.

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And of course the pain pills give me really bizarre dreams so if I DO fall asleep, when I wake up I’m in pain and completely disoriented too. . I really fucking hate this. Sorry to be a whiner. But it’s 6:30am… it’s not like anyone will actually read this anyway.

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time to try and sleep again. Hopefully that fucking pill will finally kick in. At least a little. jesus.

On the Way Out

Pain is a little better finally. Can’t remember what time I took the last pain pill, but it was long enough ago that I can say the pain is actually improving.

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Won’t be doing any jumping jacks anytime soon, but at least I’m not in pain to the point of tears anymore.

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Wonder if this is going to happen after each treatment?

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In other chemo news… have found quite a few foods that still taste normal. Diet coke unfortunately is not one of them (yech). Watermelon, ritz crackers, apples. My chinese food last night tasted… different but not bad. And today’s omlette was also different but not bad.

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Hair is still.. hanging in there. So far. She said it might be a couple weeks before it started to fall out though so technically… it may not start till next week.

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I’ll just be glad if the joint/bone pain is on it’s way OUT.

Common

Finally looked up side effects for this round of chemo:

“Side effects

Common side effects include nausea and vomiting, loss of appetite, change in taste, thinned or brittle hair, pain in the joints of the arms or legs lasting two to three days.”

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2-3 days of joint pain. Maybe that means after today it’ll be better. Right?

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fuck.

Side Effect Check

Leaning more and more towards pain being a side effect of the chemo. Last night’s discomfort continued today in varying degrees but the pain is so …. universal and so total I can’t think of anything I’ve done that could possibly be causing it physically or directly.

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Mostly joints and bones… but even… pain in my cheekbones, my jaw. Knees are arguably the worst right now— stuck in vices almost.

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I’ve been taking pain pills throughout the day bu trying not to overdue it.

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Better when my body is warm, so I’ve been hiding out under quilts despite the 90+ temperatures outside the house.

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When I finally fell asleep last night it was after a lot of tears and discomfort. She said the 4th and 5th days after would be the worst and today is day 4… if I’m not better or in less pain by Wednesday, I’ll have to call. I can’t live like this for much longer, it’s just… it hurts too much.

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I wasn’t really expecting it, I don’t remember joint/bone/muscle pain being discussed as a possible issue with this round. And I’m not planning to stay upright long enough right now to go research it.

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Just want to stop hurting and get some more sleep.

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Aside from that, the only real side-effect I’ve noticed is change in taste. But that happened last time too (although it seems a bit more obvious this go around).

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Don’t really care about that though. Just want to not be in pain. Not handling the pain very well.

Bone Pains

Somehow in the last hour, it seems that every single joint in my body is in pain and under pressure. Knees, ankles, wrists, shoulders. My head is aching and I feel… just… I feel like shit.

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And I keep shifting in bed, turning, tossing, trying to get comfortable and I can’t. I’m just… it fucking hurts.

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And I have no idea what to do about it. I took a hydrocodone but it hasn’t kicked in yet and I don’t even know if this is chemo related or just body weirdness or what. But I’m just… sitting here, bawling.. uncomfortable and in pain and out of sorts and unhappy.

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I don’t want to be in pain. Where is it coming from? I didn’t do anything weird or different today it just… started in. I mean, my ankles felt a little weak earlier, and my headache’s been building but now it’s just… like my whole body is sore and uncomfortable. All over. And my knees hurt so fucking badly. I really really hate this.

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I don’t know what to do about it. Like, is this something I call the oncologist about? Or do I just try to deal with it? Normal? Not normal? Fuck. I just got to a point finally where I knew what my body was doing and now it’s all fucked up again.

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Right now, I just want to sleep. Seriously, just sleep. I’m so tired and I hurt and fuck this shit. FUCK IT.

How Long...

You know the thing is… Even though those CTs came back clear. I am still afraid. I had CTs come back clear before… when there WERE tumors.

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And maybe it’s too soon to be asking this. Maybe I should wait until I’m really done with treatment, but the truth is, it is always in the back of my mind:

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I am afraid. I think I will always be afraid. What if it comes back and they don’t see it? Will I be afraid of Cancer for the rest of my life? Even when this is “over”?

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I’m not even done with treatment and I’m afraid. How long will I be afraid?

Chemo... Round 2

So the Chemo trail gets real today.

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The last round was just a booster to help the radiation work bettter. But now we’re dripping the real shit.

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Signed a giant consent form with an interesting array of listed side effects. Things I have to call in about:

-rashes

-fever over 100*

-Feeling… odd or unwell at all

-Nausea issues not managed by meds

-neurasthenia (numbness/tingling in fingers, hands, toes)

-difficulty breathing/tightness in my chest

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I’ve been told my hair WILL fall out this time, probably in the next couple of weeks. I have an extra nausea med, it’s actually a steroid. I’m to take 1-2 every day for 3 days after chemo along with the others if I need them too. Evidently the nausea can be a little overwhelming with this combo.

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It was a really long day. I got to the center at 9am (late by about 15 minutes). They accessed my port but couldn’t get blood return, so they ended up doing my draw from my arm (they had to call the super-phlebotomist to find a vein) while they shot me up with “port drano” to clear my port for treatment. So while that drug was working, I had my appointment with the Oncologist and her team

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Everything looks good. CT came up clear, no new tumor growth, some kidney stones that aren’t bothering me as yet that they’ll keep an eye on. Physical exam was also good. Everything is good.

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We’re planning 4 cycles of chemo for this round. Then another evaluation. At that point she’ll decide if more cycles are needed or not.

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I’ll admit I’m feeling a little anxious about this round. Today didn’t really help, to be honest.

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They set up the drips as usual, pre-meds, flush, etc. There are actually 2 chemo drugs this time… 1. Carboplatin, and 2. Paclitaxel

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The Taxel was first, mostly because they expect issues with it. Whatever fluid they use to deliver the drug seems to have a higher incidence of allergic reaction than other drugs do. And, sure enough… they started the drip, I fell back to sleep and woke up when my face started to super heat… pain radiating from my head down my shoulders and lower back in waves. I called the nurse and they stopped the drip, pushed benedryl and ativan. Apparently it’s especially common in those with gynecological cancers. :shrug: Since I don’t usually have major allergy issues, it was pretty scary and unpleasant, but it got dealt with quickly and before it could really affect my stats. They got Dr. Kehoe who came in and was very reassuring, watched and waited until the symptoms went away, and then talked to me a little about the process.

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They will continue to dose me with the Taxel, but instead of putting it on the full drip, they’ll step up the drip speed bit by bit each time. And they’ll start me with a standard dosing of benedryl and ativan as a precaution each time as well. She’s sure that by the last cycle my body will have adjusted and stop reacting to it anyway.

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The Carbo was easy. It only took 30 min to drip. Unfortunately because they had to slow the drip of the Taxel so much… even with the minimal 30 min drip for Carbo, I didn’t get to leave until 7pm. A 10 hour day at Simmons. :oy:

This is also the time when I start having to be incredibly careful about who I’m around and what I’m exposed to. Got a cold? You won’t see me for awhile. The immuno-suppressant factor is pretty high for both of these drugs evidently.

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Should be interesting. My next cycle is September 27th. If my math is right my sessions will be Sept. 27th, October 18th, and Nov. 8th. So if I’m able to stop at the 4… then I WILL be done before Thanksgiving which would be nice.

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4 cycles. 12 weeks. 1 down, 3 to go.

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I can do this. And then I can be free. Cancer free.

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That’s the whole point right? I mean, all of this will be worth it. To say I beat Cancer.

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I just wish that made me feel less frightened of the process.

Fingers Crossed

CT scans went fine. Nicest facilities I’ve ever been in for a CT. I’m used to having them at small clinics or the hospital.

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I got a warm robe, they covered me with a warm blanket, lots of pillows. Aside from my arms overextended above my head it was actually pretty comfortable.

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Assuming if nothing major shows up she’ll review them with me on Thursday when I go in for my pre-treatment appointment.

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Still a little emotional about starting treatment again. Not to sound immature but… I don’t wanna.

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Just hoping nothing pops on the CT so that we can continue on with this being the last round. I don’t know how people handle being in treatment for years… I don’t know what I’ll do if it comes back someday and I have to do this over again. I don’t know if I’m one of those people who is strong enough to do this again. :shrug:

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Fingers crossed.

Scans

CT Scans tomorrow. Chest and Abdomen.

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Not sure if I’m more scared they’ll find something, or that they won’t. After all… all those tumors in my uterus never showed up on CTs.

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After CT Scans, I have another week and then Chemo # 2 starts. I’ve been moping most of the day. I know it’s stupid, I just really am not looking forward to this. It could be so much worse. My treatment is so minor compared to some folks. 1x every 3 weeks for 4 sessions. Done after Thanksgiving.

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It’s just in the last week I’ve been feeling so much better. Finally. And now here we go back to treatment and side effects.

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At least my hair should fall out this time. Is it sad that I feel like that will be a good thing? I hate the way it grew in. Wonder how things will change this go around.

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Oh well. Not like I have a choice right?

Bloodshot

I constantly forget that I literally CANNOT eat the way I used to.

I went to Jack in the Box to get lunch. And I guess I ate too much. It didn’t seem like too much, and I was very hungry.

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But I just vomited so violently that there are broken capillaries in my forehead, cheeks, neck… and my eyes are COMPLETELY bloodshot.

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:sigh:

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There wasn’t even nausea first, just went to the restroom and suddenly… ugh.

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So yeah, that was fun.

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I think JiB is officially off my list of places to eat. That’s the 2nd time that food from there has led to something like this. I’m done.

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blegh.

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Hope some of the bloodshotness is out of my eyes by tonight’s show.

Random Nausea

Still dealing with random bouts of nausea. Currently sitting on my bed, trying to decide if this is one of those bouts that won’t go away until I actually throw up and I’m starting to think it is. I hate those. I am not a good thrower-upper. Never have been.

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But I can’t seem to settle it, and I don’t think it’s going to pass until I do. Frustrating, and unpleasant.

SURPRISE!

I don’t think you understand the true marvel that was today.

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I had a really crappy night, hardly slept, issues with a neighbor, wicked bad dreams. Hauled myself up to go to brunch with the Fairy Godmother and Honorary Fairy Godmother. As requested, I packed up my containers of finished jewelry pieces for HFG to go through when we finished eating.

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We arrived at the restaurant, and I discovered: a SURPRISE BIRTHDAY PARTY for me!!!

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I have a group of “goils” here in North Texas that I bum around with… I’ve known them since about 2004 online, and ever since I moved back here, I’ve spent varying amounts of time with them all and they’re a huge part of my support system. Earlier in the summer I’d mentioned wanting to do something really big for my birthday, but not having the energy or gumption to plan it. One of them volunteered to take on that task.

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And today, I discovered the final product. We met at Uncle Julios (my favorite tex-mex restaurant) and I was surprised to see my goils in attendance, balloons on chairs, smiling faces, gifts. It was WONDERFUL!

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And when food and jewelry shopping (I made a ton on jewelry sales today!!) were over— they brought out my very own TARDIS CAKE! :dies:

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It was awesome.

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I was exhausted, and if I’d had to choose, today was not the day I’d have chosen for a party… but oh my heavens it was so lovely and so special and I feel so loved.

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It’s funny. When you get sick, you have certain expectations for people. Some fall away, hide. Either because they can’t deal with the pain of your illness, or because they weren’t as close as you thought they were to begin with. And then… some people just… rise to the occasion. They reach out and check in and constantly remind you that they’re there, that they’re loving you and caring about you and supporting you and praying and thinking about you.

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These girls are like that. Constantly a hand outstretched somewhere if I need it.

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Or, if all else fails— a really amazing Tardis Cake.

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This was the best day I’ve had all year. Easily. And when it finally hits me (after a nap and maybe a quick trip to Michael’s) I will probably bawl my eyes out. But happy tears. Because I still have people who will go to great lengths to tell me they love me. Individually, and as members of this sacred-to-me group of women. And I couldn’t possibly ask for anything more than that.

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So happy belated birthday to me. It was so worth waiting a week.

Radiation Skin

I discovered tonight that I *did* actually get “radiation” skin.

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I was falling asleep, or trying to- and I rubbed my belly… at the sides.. in the crease where my waist meets my hips.. and skin rolled away. Just small pieces. Being a picker, of course, I started peeling.

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It took me a minute to realize the implications. I got up, got a hand-mirror, turned on the light.

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Stared at the dark skin, the peeling flakes, the soft raw-looking flesh underneath.

It doesn’t hurt. Less painful than a sunburn anyway. Itches a bit, a sign of the skin repairing itself no doubt. But disconcerting. Strange, to see it when I didn’t even really notice it before. Benefit (or detriment) of being fat I suppose. My own folds and wrinkles hid it from obvious view.

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I don’t know how to feel about it. Relieved? Because I know radiation is over… that I’m only noticing it as it’s healing itself? Upset? Because… one more sign of what I’ve been dealing with? One more piece that just… keeps surprising me with side-effects?

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I’m tired of these surprises. I’m tired of being fine one day, then waking up vomiting the next. Tired of knowing my body, knowing my skin one day and waking up peeling and red and ugly the next.

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I’m tired of this. Things were going so well when I first got sick last year. Really really well, well in ways I never thought it would. I was at a stable job, pursuing my art, loving my body, happy with who I am. And then Cancer changed all that, changed it even before I knew that it WAS Cancer.

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I keep thinking it’s going to be over, that I’ll get used to it because I will be beyond it. But will I ever really? I have another month of treatment, though thankfully no more radiation. But even beyond that. Every 3 months I have to go back. To get checked. 3 months. Every 3 months, to be reminded, to be rechecked, to be re-examined.

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No matter what I think or say… Cancer will be a part of me for the rest of my life. An invisible companion- stretching out a hand, waiting, looking for a way to grab hold of me again. And maybe it never latches on. Maybe I never again have to feel its fingers in mine… but it will always be… THERE. Here. Next to me.

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I don’t know how to manage all of the emotion that comes with that. And I don’t know how to talk about it. How to make sense of it.

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My life was as close to perfect as I could ever have imagined. And now, because of all of this, I have to rebuild. And maybe it will be better. Maybe this is just the beginning of more wonderful and amazing and satisfactory things.

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But right now, all I can see in my future is 2 sets of footprints… one belonging to me- and the other… to the Cancer that will walk (hopefully) silently beside me for the rest of my life.

1 Week

It’s been more than a week since my last radiation treatment, and longer since my last chemo. And yet I started the day by projectile vomiting in the bathtub. Nothing better than that.

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Still a little nauseated, and that was almost 20 hours ago. Just when I start to think it’s over… it starts all over again. I don’t get it.

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I have my follow up with the oncologist tomorrow and I’m hoping there isn’t any conflict with the insurance. I’ve officially opted for my cobra coverage, but I just have this sinking suspicion I’m going to get drama tomorrow. I can’t afford drama.

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Heading to bed now. Spent the day resting and beading… did finally eat something which has managed to stay down, thankfully.

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Have to get bloodwork tomorrow too, fingers crossed that my magnesium and potassium will finally turn up normal again. Or normalish.

Happy Birthday to Me

Feeling a little better with some caffeine. Decided to power through and enjoy myself at least a little bit.

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Today’s plan:

1. Brunch at Barbecs

2. Shopping at the proper bead store (yay!)

3. Napping

4. Beading

Tomorrow’s plan:

1. Doctor Who marathon with Kris

2. Ice Age 3 at Studio Movie Grill (dinner and a movie!)

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And that’s my big birthday weekend. It’s enough. Friends are planning a big to do in a couple weeks (and that’s all I’ve been told). That will be good.

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Now, waiting for Kris to be ready then time for brunch.

Lucy

Lucy (my dog) was put Down about 745 this evening. In the course of the afternoon, in what we call... a chemo fog, I put her outside and then forgot she was there. 

The consensus was that even if she made it to the e-vet (which was frankly a major if), her condition was bad enough that we likely still would have been looking at euthanasia. We talked about it and it seemed crueler to try and take her over there with the high risk that she’d suffocate on the way over than to do the merciful thing here and now. They believe that she’d also aspirated at some point as well which added to the problem.
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Lucy was 11, almost 12 years old and was very very loved. Kris and I were both with her to the end. She will be very missed and its going to take some time for me to be able to look at all of this and not just feel….. Guilty.
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Love you Lucy-loo and I’m so sorry I wasn’t a better doggie mama to you, you deserved a lot better.