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Round 3- let the frustration begin

Feb. 26th, 2007 | 09:35 pm

Well, as of today I am at least half-way through chemo and things physically are still fairly good. I know there were a lot of people I was supposed to email or call over the weekend (especially my family!) and didn't get to and I apologize for that. I apologize that you more than likely won't hear from me tonight or Tuesday either :)

I'm actually going into work for a couple of hours tomorrow. Tuesdays seem to be my good days and there are a few things that I absolutely HAVE to do from the office, so I figured I'd show my face for a bit. Fortunately, I have the ability to leave pretty much whenever, so I won't get stuck there if I start to feel ill.

I went for a short walk tonight. The IV meds that they give me for nausea are also a steroid, so they concurrently give me a headache and make me have way too much energy (in other words, I can't sleep off the headache), and I think I've been feeling a little frustrated/irritated/angry because I've been spending so much time doing little to nothing physical. So, I went for a walk around my (sort of) neighborhood.

Heather and I live near (not in) the Country Club area of ABQ and it's kind of like going to a whole other part of the city. Not that our neighborhood is bad, but it's the difference bewtween $140,000 houses and $500,000 houses. You know what I mean. It's seriously only like three blocks away, but it's so much cleaner and put together and the yards are landscaped really nicely. It's funny how those things translate in my head to "safer" too. Maybe it's because I'm from Detroit.

Anyway, it was a nice walk and actually calmed my headache down a little bit, but it made me think about some things too.

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To quote Bilbo Baggins, "I feel thin, like butter spread over too much bread."

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Cream Puff

Feb. 24th, 2007 | 05:13 am

It's early. Or late. Depending upon if you've been to sleep or yet not. I have been, so the verdict is: early.

I'm not really up for any particular reason other than that my life has taken on a sleep/wake cycle of it's own based on very little outside of what my body feels like doing. Sure, there's an appointment here and there that I have to make or some phone calls for work and such, but for the most part, I eat, sleep, bathe, move around when I feel like it. For someone who has been on a schedule (especially in retail management) for so long, it's very surreal.

Saw my doc yesterday, had labs run, went over my "routine" for the next few weeks. So far, I'm actually doing quite well. According to my doc the benchmark for what is considered "well" under such circumstances is your weight. I have actually gained .2 kilos. Which basically means that I am at the same weight I was two weeks ago and am getting enough calories in my body to deal with this poison. I am the first to admit that they are not always the "healthiest" of calories (many are due to Dove's new Easter Eggs), but he says that now "is not the time to worry about your health food diet."

My Oncologist is a really funny guy. Just a big huge guy's guy straight out of a place like Kansas. "Corn-fed" I believe would be a good way of putting it. At first I thought this was going to be a bad thing, but the irony is that he's actually ended up being THE person who has treated me like a guy through this whole thing. Don't get me wrong, the nurses do too, but more in a "you poor boy (we can get what you're going through *wink)" sort of way. Yesterday, when talking about getting the internal implants done in the next few weeks you know what this guy says?

"I'm gonna tell you what my football coach always used to tell me: SUCK IT UP CREAM PUFF."

And the weirdest part? I FIND THIS COMFORTING. It's made me think about a lot of stuff revolving around being a man in this situation rather than a woman and even though in the beginning I think I thought it was worse, in so many ways I am so much luckier for it.

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And that is the kind of care that everyone, regardless of gender, should have.

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a break

Feb. 21st, 2007 | 01:03 pm

Okay, so today I officially get a break from radiation. The machine's down. This is making me happy, but in a nostalgic way. Nostalgic only because missing your radiation appt. is like having a "snow day" in elementary school. It just gets tacked onto the end of the calendar. But, for today, I'll take it.

The only other real news medically is that my insurance is now denying payment of my damn Zofran. Zofran is a very good anti-nausea pill that I am supposed to be taking three times a day, at least five days as week, more if needed. My first script was only for 15 pills, I filled that on Feb 8th. Now, mind you the script I am getting right now is the generic, not the name brand Zofran, and for those 15 pills my insurance company paid five hundred dollars! I paid $10. Also, usually chemo cycles are once every three weeks, mine are every week. So, under usual circumstances, those 15 pills should last me the whole cycle and be refilled in a month. For me they are only covering roughly one cycle and then I'm supposed to go through three without them?

I talked to my research nurse today and they are going to try to get it Pre Authorized to get it covered in time. Hopefully this will work out because they are the best drugs to prevent the chemo related sickness. If not, I'm going to have to suppliment with something else and that kind of worries me. But, once again, I will just say "Thank the powers that be that I have insurance!" Otherwise just these stupid pills (not to mention my other five prescriptions) would be costing me over $3000. Why again are we against universal health care? Don't even get me started.

On the can/bottle recycle front....I have decided that although I am anal retentive, I do suppose that the WHOLE Earthship doesn't have to be one kind of can. I can be anal retentive with each particular wall. So, I will still have my PBR wall, but considering how much Dr. Pepper Heather goes through and the cans at work (Mt. Dew, Sunkist, Coke, etc) that the staff goes through, I will just have to make each wall it's own theme. This will also negate my friends (and me for that matter) from becoming alcoholics off of cheap beer.

And the Boost can go into some interesting decorative thing too I suppose :) Maybe drainage for the base of pots too? That's an idea.

Anyway, it's nap time. I get worn out from the simplest things these days. Hope everyone else is well. And thanks for all of your great ideas!

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PS of the day- beer cans

Feb. 20th, 2007 | 11:52 am

Since I'm on the topic of recyclables....

This is for local people only unless you are driving to NM for some crazy reason and want to haul garbage with you. If so, feel free.

Heather and I are seriously talking about buying some new property in the next five years (still in the ABQ area, but probably a few acres) and building an Earth Ship on it. If you don't know what an Earth Ship is: they are a totally self-sustaining house that you basically make out of a bunch of crap that no one wants including old tires (important!), cans, glass bottles, etc. and they are super cool. I know it sounds SOOOOO freakin hippie (and it is), but she and I went on a tour of what was the first ES community built in Taos last year (now they are all over the world) and we really ultimately want to live in something like that.

Find out more information here if you're interested: http://www.earthship.org/

Anyway, since it takes a long time to collect materials for it I figured I would start now. This is also because I am totally anal retentive and want all my cans to match and because though NM recycles, there is no bottle deposit law here, so most can get thrown out. ANYWAY...to get to the point. Any and all people who want to donate their Pabst Blue Ribbon cans to my project can feel free to drop them off at my house at any time. If you need that address let me know.

Why PBR you ask? Because it is cheap beer that is still palitable and I really really like their old timey logo. So, there's the scoop.

Again, I really need to get back to working don't I?

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Totally random question

Feb. 20th, 2007 | 11:41 am

Does anyone have any good ideas or uses for empty Boost bottles? They are about six inches tall made of #5 and #7 thick, hard plastic with a twist on cap.

I've been drinking it so I don't lose too much weight, but they aren't recyclable and I hate that! Why don't they just make ALL food grade plastic containers #1 or #2? It's maddening.

Any ideas? I don't think I can store leftover wood stain in them because I think it would melt it. Maybe not? Any plastics experts in the crowd?

Ask your friends! Ask your families! Ask your local craft ladies/gentlemen! Don't let the Earth get even more polluted! Spend your whole day on my ridiculous quest!

Wow, I really need to get back to working.

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PS for the day

Feb. 19th, 2007 | 06:10 pm

I forgot to mention I am also now ghastly pale. I haven't been this pale since... "the eighties?" Erin asks. It's too bad that I shaved my head. I could have given Robert Smith a run for his money and I wouldn't have to buy any makeup except red lipstick.

Soon, if I'm naked I will be able to camouflage myself against my unpainted interior walls. Talk about commando.

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Round 2

Feb. 19th, 2007 | 04:14 pm

So, today was my second chemo cycle. What I am learning is that the day of and the day after I am actually great. They pump you full of IV Dexamethasone just before the Cysplatin and it carries on for a day or two. It's basically like an upper and though it gives me heartburn (and a little anxiety) I feel good. Then by the third and fourth day (Wed. and Thurs. in my case) I crash and the side effects hit me pretty hard. These days suck. At least that how it was last week. And I'm hoping that this week can be a repeat of last week if nothing else for consistency's sake. On the other hand, if my body wants to negate the crash altogether and just feel fine for the rest of the week that's okay by me.

Last Friday night though was really hard for me and the "gut sloughing" (sounds nice, huh?) began. I will hopefully keep this under control because I DID NOT have it under control last Friday and was up all night sick, freezing, and shaking uncontrollably in the bathroom. That aspect of it will only get worse from here on out.

And as a TOTAL NERD sidenote...

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So, until later...

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Feb. 14th, 2007 | 07:07 pm

Well, I knew it was going to happen sooner or later I suppose. It appears that side effects are kicking in as of today. Yesterday was pretty good until last night when around 1am I started to feel kind of sick. So I took my meds and slept pretty okay, but then I woke up this morning really tired.

I had to go in to the vascular clinic this morning to make sure 100% that my circulation was doing okay in my thumbs still. It's fine. I'm glad I had that appointment actually because it snowed again here last night and before I left I got a call from the Cancer Center saying they were going close early. Which actually I was happy about because originally I was supposed to go in at 10am then 1pm then 4pm for radiation. This way I got it all out of the way before noon.

The other funny thing was that Heather and Erin both ended up going with me because Erin was supposed to drive me, Heather was supposed to meet some of her employees at the Peds clinic there too, but then our work was closed due to the snow (how funny!) so none of us had to work today.

Anyway, while at UNMH I started to get really flushed and sick feeling. No temp, but hot everywhere, sweating, getting a little dizzy. I got my treatments done and came home to crash for about five hours. I've been up and down sporadically since, but overall feel pretty shitty. I know it's just going to get worse from here on out and I'm not happy about that, but I know I'll get through it and by Summer I will be back to riding my scooter and having fun and hopefully camping.

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I will as a last thing say that Heather has been wonderful through this thing so far and I love her to death for it. And I realize that I really do have a wonderful group of people in my life that are offering me more support than I ever expected. That makes me very thankful and I appreciate all of you.

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Feb. 13th, 2007 | 10:32 am

My new favorite thing about having an upgraded blog with advertisements is that the ads are done by google which skims your posts or emails to come up with relavent ads. So far, on this page I've seen ads for chemo, hair replacement products, prostate, and breast cancer. HA!

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Round 1

Feb. 13th, 2007 | 10:25 am

So, yesterday was my first day of chemo and radiation. We got up a little late and kind of rushed to UNMH. It was the whole hurry up and wait thing. Got there and then sat for a little over an hour. Funny thing is that every one kept saying things like, "Oh, I'm sorry you had to wait so long!" For me coming from a large city like Detroit, waiting an hour is normal at the regular old doc's office, easily two at the hospital. Actually I think the last time I had to go to the ER for a non-emergency emergency I waited for over five hours. So, an hour seemed pretty quick.

I have to admit that I was pretty freaked out by the whole thing. I didn't know what to do what to expect, I thought it was going to be horrible. You know you see these things on cancer in the mass media and it's all people who look like they've come through the holocaust or something. People being so sick they can't move, bald, skinny, pale. And I do know that for a lot of people with cancer that's how it is. But, from what I've seen so far (which admittedly has been little) most of the people are not like that. It's actually pretty surprising how much chatter and laughter and upbeat stuff is going on in the chemo room. And the wide range of diversity that's there. Especially in regard to race and age. I think that the kids wing is somewhere else because I haven't seen any really young children, but there was a guy there yesterday that was definitely younger than me. For some reason this made me feel better. I guess it was because I didn't want to feel like I was in a room full of old dying people. Not that I wasn't aware that there would be old dying people there, but more that it probably wouldn't make me feel real hopeful.

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Last but not least I am apparently some anomaly of nature. Yesterday about 20 minutes after my chemo ended my thumbs turned blue. I thought it was just dye that had rubbed off on my hands from my radiation markings, but then it was also under the nail bed and moving down toward my wrists, so I called the nurse who called my doctor who called every one else and within 15 minutes there were like 15 people coming in to look at my thumbs. My doc (who I love but tends to say whatever is in her head) said, "I've only seen this kind of thing happen three times before in my career and one of them had to have their finger amputated!" Um, wow. So, after already spending eight hours at the hospital Heather and I had to stay longer to get vascular tests done and blood work to make sure that I didn't have a hole in my heart of some weird blood disease that they missed.

Fortunately, our friend Retu is a Cadiologist at UNMH and she just so happened to be working on Echocardiograms while I was there. I only know this because she came to visit us in the chemo suite, which was really great of her. So, I mentioned this to the nurse and lo and behold they sent us up to Retu to get an Echo. Also fortunately, I have what Retu classifies as "a beautiful heart." Literally. No holes, no blood disorders, no strange rhythms. Everything appears to be fine and I just got blue thumbs for God only knows what reason.

In addition to this weirdness, chemo can cause a fever, my temp is actually low hovering about 94.8F, the anti-nausea pill that should have no side effects makes me dizzy, but the one that is supposed to make me dizzy takes the dizziness away. My nurse says that I have, "One crazy metabolism." But, all in all I am still healthy and fine, so I guess it's okay.

Well, now I'm a little tired so more later I suppose. Radiation at 4pm today. I think I'll nap before.

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