technical issues

Anyone know why my line/paragraph breaks show up in some posts but not others?

"I wouldn't trade it for anything...."

Erm, yeh. That's what a breast cancer "survivor" encouraged me with recently.

Let me pause and warn you that I will be using profanity heavily in this entry.

First of all, I could probably write an entire entry on the term "survivor." People--clearly not enough--survived concentration camps, and odds were with them that they would never go back to one. People survive serious car accidents and rarely plan on having others. Sure, they happen, but it's not expected. People survive natural disasters, and if they are able to and concerned enough, might choose to relocate so as to eliminate the risk of that particular disaster affecting them again. For instance, if I were worried about hurricanes, I'd probably move to Michigan if I could. Yes, certainly, a blizzard or tornado might get me, but I'd be safe from hurricanes.

However, to "survive" cancer is something different. Or at least with many of the more serious cancers it is. Surviving simply means "it hasn't killed me yet" and "I made it through that treatment." I'm not saying cancer is the death sentence it once was, or at least many cancers aren't. Mine certainly isn't. But I also can't move to Michigan. Once you've had cancer, you might be able to move from New Orleans to Tampa, but either place has been hit more than once by hurricanes. You still have to pack in water, pack up your paper valuables into waterproof containers, and keep an eye on the weather. Thank god for weather reporters. No, seriously, once you've had cancer, your weather reporters are those blood tests, check ups, medications, scans, MRIs, xrays...all of those let you know if something is brewing in the Gulf, and then you keep an eye on it, batten down the hatches, check your insurance policies, suck it up, and say, "If necessary, we can rebuild...."

Aw, hell. I am writing an entire entry on the word survivor.

But here's what I really wanted to discuss: the bonus of cancer.

Which I think is pure, utter bullshit.

This woman was encouraging me by telling me she "wouldn't change it for anything." Cancer was a wonderful thing in her life. It blah blah blah blah blah....

Certainly, everyone's experience is different. Nonetheless, there is a premium on finding this experience beneficial. And today, I think I figured out why so many of us fall into the "oh my gosh, my life positively sucked until I had cancer" trap.

Because, during treatment, you can either find something good or life sucks even worse. And if you talk too much about the suck, you sound whiny, even when there probably isn't much good to talk about.

For instance, today, I, in general, felt pretty good. I had good energy (crazy some people might think since I was organizing closets). I only had fleeting moments of nausea. I even sat in a different spot on the couch than the one I've been camped out on for nearly 6 months. All in all, a good day. And that's what I'd tell people.

Except, along with feeling good, there were those moments of nausea. There was the time when I realized I really just couldn't stand any more and I had to sit down. There's the constant neuropathy, which may or may not go away in the future. Or it may or may not get worse in the future. There's the fact that these tissue expanders are a wonder of science and medicine, and at the same time feel like I'm wearing a bra 24/7. I have always hated wearing a bra. I've especially always hated those times I've had to sleep in a bra. Yippee!!!! Maybe only 6 months of bra sleeping ahead of me.....seriously, what the hell? Need I even talk about the chemo brain, which I know I bitch about way too much as it is.

So, it's either talk about the benefits of cancer....good friends, love, support, personal growth, spiritual growth (how do those two things differ, anyway?), physical changes, dietary changes, blah blah blah blah....

But cut me a fucking break...I'd fucking trade cancer for just about anything. Never experience cancer or never eat chocolate again....no brainer. Cancer vs. home. Home is where the heart is, baby. Since I'll be exposing my heart to high levels of radiation in a few weeks and am currently exposing it to cardiotoxic drugs, that seems like a no-brainer, too. Cancer vs. Family? That's a little tougher. I can't wish away what I already have, in that case. I mean, how would I choose (JUST KIDDING!!!!!). But cancer is doing a trip on my family anyway. I'd love to say we'll be better, tighter, closer, more loving when this is all over. If we don't kill each other or end up on the psych rolls in the meanwhile. Cancer v. money. Wish it were that easy. We'd just started crawling out of a financial hole, and now, slam our standard of living has dropped dramatically, and probably will not rebound from this. Cancer v. stability? I can't even imagine what a "stable" life would mean at this point. It's gone. We will live in fear of me losing my job until I do. We will live in fear of losing our health insurance for ever. So, stability isn't even something I could trade on if I wanted to. I'd take instability any day and no cancer. I'm used to instability and uncertainty.

I know I've harped on this many times before, and I don't know why the happy-face attitude gets under my skin. I'm certainly a pro at it, myself. And that's the attitude we all have to have to get through each day, each treatment, each moment of feeling like shit.

But I really don't think I'll ever be better off because of cancer. And I'm sure I'll return to this theme numerous times in the next few months. Would I trade the perky boobies I'm sure I'll have some day (perky boobies that move, that is, as opposed to my cement boobies now) for chemo? Erm...probably not. Maybe one session? Easy to say that now because I know I can survive the weeks after one infusion. But certainly not 6 or 10 infusions.

But looking on the bright side (because if I don't, I would then just have to put a plastic bag over my head, huff some glue, and then go to bed)....

Fuck, there really isn't a bright side.

Good things are coming out of this, because people are working so hard to make them happen, and for those, I am eternally grateful.

Otherwise, cancer would really, really suck.

Fingers Crossed...part 2

Yes! Cleared for full activity with no restrictions!!!!

Of course, somehow, in the last two days, I've also managed to allow my tissue expander on one side to bruise me from the inside out.

That is talent, folks.

In essence, I have a bruise developing from inside and progressing outward.

I don't get it, either.

Fingers Crossed...

A) I'll feel up to driving to my doctor's appointment tomorrow morning since we totally didn't prepare Tynan for an adult free morning before he went to bed tonight. Oops! That means Louis can't drive me, since I have to be at UTMC at 8:45. And Nathan has a class at 9:30. Right this very minute, I feel fine. Earlier today, the idea of driving to Toledo would have wigged me out...not that I would have been incapable, just really miserable. Like driving with the flu.

B) I'll get a clean bill of health (or whatever it would be called in my case...I doubt I'll ever get an official "clean bill of health" from a caregiver ever again) from Dr. L tomorrow (the surgeon). No restrictions. I can go back to yoga. I can exercise. I suppose some would think "I can clean house" but I'm not going that far.

C) I'll get in with the OT for lymphedema assessment soon, get my sleeve ordered, and then be done with it. Actually, I want orders for two sleeves, since my right arm bothers me more than my left (thanks to a totally unrelated case of tennis elbow), and I'm going to try to argue that since chemo seems to make lymph nodes disappear and since I've never had swelling in this arm until doing chemo....a sleeve is in order and, therefore, covered by my insurance. And, I think I found a place in Findlay that sells cool ones.

D) Even better would be that I find out that the lymphedema treatment at Wood County Hospital is reputable. It would be so nice...just so, so, so nice...to be able to to something here in town instead of driving to Toledo.

Round 2, session 1, day 4

It's still early in the day, but in general, I still feel OK. I started having a hang-over sort of feeling yesterday, but a few Tylenol and making sure I stayed hydrated and ate plenty of protein kept that at bay. Sleeping was rough last night. I was so tired (I'm not pretty sure it is the Compazine that is knocking me out) that I decided to not take Ambien, but then I slept very lightly, thanks to the steroids, and woke up at 4:30. After that, I lay there awake, until I finally fell back asleep only to be jarred awake by a horrible Tynan tantrum having to do with his inability to find the exact pair of socks he was expecting to wear to school...somehow this all had to do with his brothers hating on him, the fact that he has no place in his room to store socks, all of which boiled down to the fact that he got a new bag of socks on Saturday, left them on the steps, and I guess someone else wore them. Who knows. I had no pity.

Now, I'm awake.

Bored.

Tired.

Can't sleep.

Just choked down a handful of pills. Get to start Zofran today.

See the surgeon tomorrow and should get full clearance for physical activity.

::sssshhhhh::

Don't tell my family. I haven't washed a dish, pushed a broom or mop or vacuum, made a bed, or done any laundry for weeks. Some of those activities, I haven't done for months!

I will join the Community Center, though, as soon as I get clearance. I just wish they had a pool, not that using a public pool is recommended during active chemo, nor during radiation, nor after reconstructive surgery, so I wouldn't have used it this year anyway! But I do love to swim, and the Rec Center leaves so much to be desired (such as HEAT in the water, convenience, etc). On the other hand, I now have pert boobies so I'd fit in that way.

This entry has devolved into a babbling of nothingness. I'm going to watch a mindless movie on my laptop and hope to fall asleep again.

Success and Monumentous Fail

With the addition of a new body pillow and two new, super plump bed pillows, I am able to sleep on my stomach for various periods of time. SUCCESS!!

For quite some time, I've been stumped about sleeping during the day. I'm a read/tv-->nap-->read/tv--> kind of person, but getting it dark enough to sleep during the day, while at the same time having it bright enough to read, has stumped me. If I get out of bed or off the couch, I then am awake enough to not be able to sleep. Then, I recently read my friend KayLynne's blog about and saw what she had to say about sleep masks. I frequently say I've never been good at being a girl. A sleep mask never crossed my mind. FAIL! (but one I think I can remedy).

Round 2, session 1, day 2

So far so good. Yesterday got off to a rather bumpy start, thanks to technology. I was supposed to have either a MUGA or an echocardiogram before starting chemo to get a baseline heart function. Like a good little girl, I opted for the echo, because MUGAs freak me out. There's something about being shot full of radioactive material, having to carry a letter to get me off the hook with Homeland Security, and being told, "Don't let small children sit on your lap for 2-3 days" that just doesn't sit well with me.

However, because Dr. Mo's office is going paperless (a good idea on paper...hahahahaha....but it never seems to go smoothly any place), the results got lost in some electronic netherworld. So, it took 1.5 HOURS to smooth that little glitch out. At one point I was offering to walk upstairs with my flash drive and get it downloaded or even take my laptop up and have it transferred. Eventually, *I* suggested calling Wood County Hospital where I had it done and getting another result sheet faxed to the infusion lab. Even that didn't go smoothly, because their phones were glitched, but I got found a workaround by calling WCRehab services and getting transferred BACK to radiology. Finally, we got it, and all went well. Or as well as chemo infusions can go. Those of you on facebook got to read about the crying woman, but even that worked out well.

I'm doing some wild anti-nausea drugs this time. Something is making me incredibly sleepy. But not tired. I don't know if that's because of the steroids...the not sleepy part...or if it is the drug itself. Which drug? I don't know. So far, no nausea. With nearly $1,000 (retail) worth of meds in me, I'd hope they'd work well. And so far, with the Sancuso patch, the Emend, and the Decadron, all seems to be well.

It'll be interesting to see when the crash comes. It "normally" happens the day after one stops taking steroids, which was day 3 the last time. This time I take Decadron until day 4, which would indicate the crash would come day 5. But day 5 wasn't such a bad day the last time; it was the beginning of the slow crawl out of the hole. Don't get me wrong, it wasn't a good day. But it wasn't a "oh my gawd, how am I going to function" day. It was a "I can't wait for this day to end" day. However, I'll be honest, and admit that I'd rather feel bad than be terminally fatigued. I'm pretty sure the fatigue is unavoidable, but I really do hate it. I hate it.

I had to go get my Neulasta shot today, and once gain, thanks to UTMC and their paperless move, my order was never appropriately received. As a result, what should have taken less than an hour....20 minutes tops...register (empty on a Saturday), elevator,, walk down the hallway, get jabbed, go home...took nearly 4 (yes, more than 3 and less than 5) HOURS. And the nurse was needle bitch from hell. The other three people in the room flinched when she jabbed me. I think she was playing darts or something. Would she be offended if I asked the next time for her to be careful and go more slowly. Holy gosh the shot hurt. And, normally, they don't.

Otherwise, all is well, except the decadron hot flashes are kicking in as I watch this.

No real silver linings.

Oh, and I'm craving Muffaletta, sans bread. Just a stack of meats and olive mush. I wonder if I can figure out a Muffaletta casserole or something.

Gotta love Onco Nurses even more...

Somehow this got stuck in my drafts section...and was never published. It's a few weeks old, but still holds true.....Onco nurses rock.
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Got a call tonight at 7:40 from Dr. Mo's nurse to let me know she had patches for me and some samples of the days 2 and 3 dose of the drug that took my by surprise today. Furthermore, she says I can get the 1st dose by IV when I get my chemo instead of the pill. That will make it fall under major medical, not under my prescription plan.



So, as of right now, it looks like the expensive anti-nausea drugs are, in large part, covered. And that's good news.

Gotta love Jak's Pharmacy...

...the workers there felt so bad that no one had called me to tell me how expensive one of my new meds is, that they are willing to give me a refund if I figure out a cheaper way to get the med. My co-pay for these three pills is $125.

Yikes! Three pills!!!! But if I don't spend 4 or 5 days puking, it's worth it.

My new do

Since I haven't had chemo for 11 weeks, my hair follicles are awakening. Actually, my hair is about 1/2 as long as it should be because I shaved my head the night before surgery. Why you might wonder? Because when it gets to a certain length, it itches and my hats don't stay on well.

However, while my hair "grew" the entire time I did my last chemo trip, only about every 8th follicle cooperated (or, since I'd prefer to be cue-ball bald over weirdly early-pubescent boy chin sort of bald--didn't cooperate), I always had some sort of fuzz going on, that I'd shave every few weeks.

Now, however, all the follicles are now on the same page, just in time to go bye-bye sometime after Friday.

To have some fun and push the dread of 8 more weeks of chemo aside, Amy and I dyed what little hair I have purple-pink. To get the color to take, first we had to bleach my hair, which in itself was a fun look. Here's the final outcome.