Search This Blog

Friday, January 29, 2010

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.

Wednesday, January 27, 2010

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.

Monday, January 25, 2010

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.

Sunday, January 24, 2010

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).

Saturday, January 23, 2010

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.

Wednesday, January 20, 2010

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.
-------------------------------------------------------------------------------------------------------------------------


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.

Tuesday, January 19, 2010

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.

Patch pt. 2

:)

Got a voucher for this round, so it will be free.

Onco nurse is talking to drug rep about getting samples for the rest.

That's a relief.

Thanks to all who showed concern. I feel the love.

Saturday, January 16, 2010

that patch...

My insurance does pay for it. However, my portion would be $125, which as the pharmacist so kindly pointed out is less than half the cost. That's just not feasible. I'm working on a work-around.

Thursday, January 14, 2010

The next step

I had an appointment with Dr. Mo today. I love spending time with her. I just wish it were under different circumstances.

::sigh::

I feel fully recovered from surgery, except for a lagging energy level. Yes, I slept (mostly) until noon today and didn't "get up" until 1:45. But otherwise, I feel fine:)

Although I knew this was coming, it was still disheartening to hear about the next four rounds of chemo I have to do. Dr. Mo was all "hey, it's only 4 rounds!!!" and I was all "Hey, you aren't doing them and never have, so bite me!!!!"

I've opted to do "dose intensive" chemo, which wasn't an option last time. Dr. Mo is letting me do this because I'm not working this semester and I'm "strong" and "determined." Dose intensive chemo is just "the same dosage more frequently." Instead of getting infusions every three weeks, I'll get them every other week. The downside is I'll never have those "good days" that people get in the third week. The upside is, it'll all be over a month earlier this way. By the time the weather is warming up, I'll no longer feel like shit. I hate the month of February anyway.

From what I've been told and what I read today, this chemo cocktail will be more challenging than the last one. Everyone keeps talking about nausea. I hate nausea. I'm sure no one likes it, but I really hate it. I had very minimal nausea the last time. I walked out of the office today with a huge handful of anti-nausea prescriptions, one of which insurance may choose not to pay for. The steroids are on a much different regime, and the nurse was insistent that I understand when to take what. I'm almost afraid to take the scripts to the pharmacy because they look scary expensive. Guess I do that tomorrow so I can find out (a) if my insurance will pay for the patch and (b) know what I'm in for cost-wise.

The one chemo drug is also quite cardio-toxic.

If the cancer doesn't kill me, there's a very real possibility the treatment will shorten my life expectancy.

Gotta love that.

Anyway, in the next week, I have to get a new set of baseline bloods drawn, get an echo-cardiogram, and get my prescriptions filled. Then away we go....

On the upside, I'll only be in the infusion center for a couple of hours as opposed to most of the day on chemo days.

Wednesday, January 6, 2010

Recovery: The half-way mark

Today marks three weeks since surgery. Given that the recovery time is six weeks, that makes today the half-way mark. The next three weeks will be spent healing internally, I guess, since the external healing apparently seems to be finished.

Two days ago, I still felt some soreness and weakness and some slight restriction in range of motion. I avoided, for instance, using my arms and shoulders to get up off the couch and would think twice before reaching for or lifting something (such as a 2 litre bottle of soda water), and would whinge when reaching and lifting. My sternum and ribs were tender.

Yesterday, I was expanded for the first time, and suddenly the vast majority of all discomfort disappeared. In fact, I have more range of motion than I did before. I can put one arm over my shoulder reaching toward my waist and the other reaching up my back, and they touch. I'm not able to grasp my hands like I was pre-surgery, but my fingertips touch. I'm satisfied.

I don't have a lot of strength, but I can function independently for the most part. I am driving without issue, I can get the drawers open on my own as well as the closet doors. I can fold laundry (shhh....don't tell my family), and I just proved that I can put on shirts over my head without discomfort. I pulled on my boots today without thinking about it. Two days ago, I had to make sure they were totally unzipped, sit down, and put them on like shoes. Today, I stood at the door and pulled them on.

Other activities requiring muscle use are still uncomfortable, such as cutting/chopping. I can slice. I can cut celery sticks or slice cheese, but I wouldn't want to chop all the veggies for veggie soup. I can't quite use the apple slicer, and I can feel the pull/twinges when cutting oranges. So, I don't do that. In sum, I can move nearly normally, I just can't accomplish a whole lot. But that's ok, because I've been working hard to avoid working hard and make my boyz work harder. Laundry is out, beyond putting things, item by item into the Wonder Washer. However, since my husband is anal about removing items and drying them and I only am responsible for my own clothing, for the most part, this works well.

In general, then, I feel really good. I tire easily, but I don't feel "fatigued" like I did with chemo. By Monday, I'd be in great shape for going back to work, were I going back to work.

And that's the kicker. I'm on medical leave this semester. I dragged my butt through last semester and chemo--the whole loooooooong semester--knowing as a reward, I'd really only have to deal with radiation--and maybe some reconstruction--this semester. I used the carrot of "eight months feeling relatively well" to get through last semester. Instead, I get to do four more rounds of chemo starting later this month. Depending on the protocol, that could be anywhere from 8-12 weeks. That's like a kick in the gut. I didn't tolerate the last few rounds of chemo so well the last time. I'd rather have surgery again, any day.

In sum, I feel great after surgery. I can do this with my tissue expanders. It's been a much smoother recovery than I'd anticipated. I'm trying to not spiral into a depression at the upcoming chemo. Instead, I'm just trying to remain angry. Anger is much better than depression. I'd rather be depressed when I'm in the midst of chemo-smackdown.

Here's what I feel about silver linings right now.

Here's what I feel about surgery and my new, temporary (and ever changing) yayas.

Tuesday, January 5, 2010

Adolescence Redux

Well, not quite adolescence, but I didn't know what else to say. But my body is changing each day:)


I went to see the plastic surgeon today. She said everything looks awesome, healing looks wonderful, my range of motion is superb, and then she said, "so, let's expand you." When I saw her a few days after surgery, she was talking about starting the expansions at my NEXT appointment, so that took me a little by surprise. However, due to starting chemo again in 3 weeks and the fact they don't expand during chemo treatments (or only at the end of each cycle when blood counts are the highest), she wants to get as much expansion done before as possible.


The act of expansion is kind of creepy. There's this hard balloon thing in there. It's certainly a lot harder than a balloon. It's more like softish tupperware. The port is magnetic so they use this stud finder kind of thing to locate it. Let's be blunt here: although I appreciate my ports (and I now have three), the concept of them squicks me out. Needles used to access ports are (a) LONG and (b) LARGE. It doesn't hurt, but it's not a sensation I appreciate.


Oddly enough, I'm mostly numb where my expander ports are, but I still feel this odd sensation. Who knows what lone nerve is functioning there. For my chemo port (aka Portia), I slather on emla cream so I feel only the pressure of the needle.


I had no discomfort today. In fact, while she was expanding me (that, too, sounds odd), on the right side, I couldn't feel anything. Nothing felt different. So, we went for a second syringe of saline. Still, I felt nothing. Did the same on the left side and it felt like the heaviness that accompanies bronchitis. But I got over it. Let's just get this done. I have to be expanded about 30% or maybe a little more than my goal. At this rate, we'll be done before I start chemo.


Oh, and I can take baths now, too, which I'm going to do as soon as the teenage boys leave my domicile and head to school.

Saturday, January 2, 2010

New Year Resolution #3

Take more baths.

Progress....hoping to get clearance for a bath from doctor on Tuesday.

Progress on Resolutions #1 and #2: none on culling pajamas; day 3 in pajamas (I even wore them when I took my walk yesterday)

Just for the record...(pt. 2)

Surgery has been easier than chemo in many, many ways. Overall, I feel better, and after the first few days, the pain in my legs and feet from the taxotere is worse than the pain from the surgery. Yes, I haven't used pain meds for the surgery pain for over a week, but I still need them nightly for the residual taxotere-induced pains in my legs and hips.

Friday, January 1, 2010

New Year Resolutions #1and #2

#1 Cull pajama stash
#2 Spend more time in pajamas

Progress....thoughts about the culling process; pajamas worn all day today:)