Friday, December 28, 2007

reclaiming my body

Before all this cancer crap, I was in good physical condition, was the slimmest I've been my whole life, was eating well without a lot of effort (took a lot of effort to get there, though!!!). I had recently achieved my personal goal of a 5K (3.1 miles) in less than half an hour.

Three weeks in the hospital, followed by chemotherapy, didn't allow for my usual workout routine (5 days/week, 1 day/week with a trainer). While I have been able to do a bit of exercise in various ways through the course of things, my body just ain't what it was. While frustrating, this is certainly to be expected, given the circumstances.

I've been starting to eat better again (will jump completely back on that wagon once there aren't any more holiday parties), and I've been jogging/walking almost with regularity.

Today, for the first time since May, I was able to jog two miles without walking. It felt fabulous :) :) I feel like I am taking my body back. The cancer tried to get it, the meds did a number on it, and it's my turn again. There is a significant chance that the radiation will take its turn, but I'm not worried about that now. If it happens, I'll deal with it.

In the mean time, I am reclaiming my body, and it feels wonderful :)

Thursday, December 27, 2007

first radiation treatment

Well, I was imaged yesterday and had my first treatment today.

Yesterday, they showed me what to do when I arrive (more on that in a moment), and took me in to the machine. I laid down, they lined up all my dots (I had to point out one of them - they didn't see it, as it's very small and has some freckles around it), drew on me with a magic marker (why are they called magic?), took pictures with the machine (one from the top, one from the bottom) and took a picture with a digital camera. The explanation was that they do this to make sure that everything is lined up the way it should be. If it wasn't, when I went back in today, they would have fixed it.

Today, I followed procedure: parked in the special parking lot (they gave me the gate code), went in, swiped my card (no need to check in with a nurse or receptionist). When my name was (badly) called over the PA, I went back, took a gown out of the heater, took off clothes above the waist, put on the gown, waited. They came back to get me, checked two forms of ID, asked me my birth date, lined me up on the machine, and did the treatment.

It was easy.

I was mildly disappointed with the treatment itself — I was expecting to be able to see a laser or beam of light or something. The only way I could tell that the machine was on was because it buzzed. For maybe 10 seconds, if I round up. Then it rotated around and did the same amount of time on the back. And that was all!

In between getting changed and waiting to go in to the machine, the nutritionist (whose name I forget) came in to say hello. While we were talking, the counselor came in to say hello. I know that she was specifically looking for me - I don't know if the nutritionist was or just happened to walk by and see me.

The massage therapist is there on Wednesday afternoons and Thursday mornings, so she was there. When I was done, I got a nice shoulder/neck/scalp massage :)

The whole thing, from the time I walked in to the time I left (including the treatment, chatting with the two ladies, getting my massage), took half an hour.

One down, 16 to go.

Yesterday, I also saw the doctor. I asked why they do both chemo and radiation. He explained that the chemo is systemic, so it kills cancer cells all over the body, should there be any anywhere else. The radiation is a "backup plan" for the area where there was known tumor. Makes sense.

And that's my story for today. I don't suspect I'll post about every radiation treatment, as I expect them all to be the same, or similar, but if there's anything noteworthy, I'll be sure to let you know :)

Saturday, December 22, 2007

Craigslist post re: cancer

I was just tipped off to this post at Craigslist. While my side effects weren't as bad as hers were, and while I generally wasn't as angry as she is, a lot of what is written here rings really true...

http://www.craigslist.org/about/best/pdx/465030621.html

Saturday, December 15, 2007

hair

Well, this is what I've decided to do with my hair:

Since it started to grow back in, I've been keeping it buzzed, #2 all around. I'm going to get it trimmed this weekend, I'm going to trim it on December 31, then I'm nto going to cut it at all in 2008, and see where it is next Dec. 31. I'll post monthly pics here, for anyone who is actually interested in watching my hair grow LOL Beyond radiation, I'm hoping there isn't much else to report in that year's time...

Wednesday, December 12, 2007

welcome, "dance is life" listeners!

Hello to anyone who has come poking around my blog as a result of Dance is Life, Life is Dance!!

It's been an interesting journey. I am happy to answer questions - just leave a comment and I'll get back to you.

If you live in Arizona (or if you know someone who lives in AZ), I would appreciate it if you'd take a moment to click here and read about tax credit donations.

the decision

Well, I decided, after talking with people (some doctors, some not) and thinking and sleeping that radiation is probably the best way to go.

I had an appointment this morning to get my tattoos; I have four. They’re the size of one needle-point, so they’re pretty teensy, which is good, because they’re black dots. (I don't want to be covered in big black dots...)

I have an appointment on December 26 to get “imaged” (I don’t know what that means), and I start radiation treatments on the 27th.

I also had an appointment with Dr. Oncology today, but there’s not really any news from it. I have another in four weeks and expect equally as little news from it.

Friday, December 7, 2007

radiation or no? that is the question...

I'm deciding whether or not to get radiation. There is a 90% chance that the cancer is dead and gone forever. The radiation's job is to take care of the other 10%. But there are some nasty potential side effects from the radiation, including but not limited to heart failure and decreased lung capacity. The doc said they are less likely than the cancer coming back ... but I know that that's only relatively short-term. They have used chemo in conjunction with radiation only for about 20 years to treat Hodgkins, so they can't know yet what the effects might be in 30 or 40 or 50 years.

Then again, they have used radiation for longer than that overall. I don't know if everyone gets the same kind of radiation. There are hundreds of different chemo drugs. Not sure if radiation is as ... diverse.

If the cancer comes back, we go back to square one and do the chemo thing again. While I don't enjoy the prospect of more chemo (and losing 6+ months of my life), I don't enjoy the prospect of heart troubles, either.

At this point, I know there's a substantial family history of heart disease. I also know that they all had other risk factors (diabetes, obesity, smoking) ... so is it really genetic?

Getting radiation doesn't guarantee that the cancer won't return. It just reduces the risk. By how much? I don't know.

It's a lot of information to process. If you have thoughts about it (or more questions to ask), I am open to them.

Sunday, December 2, 2007

the video is done!

The video from the hospital is done :)

Let me know if you want to see it, and I can e-mail it to you...

Monday, November 26, 2007

first day back at work

This isn't treatment-related, but I thought I'd share anyway :)

I had my first day back at work today, and it was everything I expected:

- I got lots of hugs and hello waves from kids

- I began my day by collecting all of the dentist's stuff on the stage and taking it to the office

- I got lots of hugs from staff

- I spent all day moving furniture, unpacking, hanging things ... and I have many days' worth of the same left to do

- there was no paper in the copier

- the principal and I had a short chat, and she seemed genuinely concerned about my general well-being.... OK, that doesn't fall under the "expected" column, but it sure was nice

- the big cabinets that I requested in March to be removed are still there

- I got three bell kits, a tenor sax, and a bari sax :-)

It was a good day. It didn't wear me out. Tomorrow, I'm doing some instrument demonstrations for classes, passing out the forms to sign up, helping with a 7/8 elective class. Should be good :)

Sunday, November 25, 2007

PET, facebook, link to pics

Well, the results of the PET are negative. Lots of people around me are really excited about this, and I guess I should be, but I'm not.

The PET in July came back negative, and I've had eight chemo treatments since then. I fully expected this scan to come back negative. I didn't consider it as "good news" (though it is) as much as confirmation of what we already knew.

***

I went to paint at the cancer art day on Wednesday. I had a really great time. I was thinking that I wasn't going to paint anything cancer-related, just paint, but that's not what came out of my brushes at all. I am pleased with what I ended up with, though I might re-do it with pastels, as I think I'd be able to do it better. I'll post a pic once I have it back. The hospital kept them all to make a display.

***

A few weeks ago, during a bout of chemo-induced insomnia, I joined Facebook. I've connected with a bunch of former students, which has been very cool. I've connected with a few other people, as well. I don't go on it all that often, but it sends me email when I have a message or a friend request, so I know when to log in :)

***

Pics from the Lymphomathon are here. I'm in the yellow-shirt group shots (front row, center), but there aren't any other good ones that any of us are in :(

Tuesday, November 20, 2007

needles

I have been stuck by a needle six times today so far. (I say "so far," though I am not anticipating any more.)

I went to get a PET scan this morning. Needle Poke No. 1: they poked my finger to get a reading on my blood sugar. This is a test that requires four hours of fasting, though I don't know why and I didn't ask.

PET scans require an injection of radioactive stuff (that the machine subsequently photographs). Needle Poke Nos. 2, 3, 4: unsuccessful attempts at inserting an IV. I haven't been poked for a while, but that didn't change my ability to stave off tears only until the failure of the second attempt. And, one of the only times this ever happened to me, the third attempt hurt pretty significantly (usually it's just uncomfortable and a little pinchy).

Needle Poke No. 5: successful IV insertion. Minimal pain. IV worked long enough to flush it, put in the radioactive stuff, flush again. (It only stays in a couple of minutes.)

[PET scan was otherwise uneventful. I'll have results tomorrow.]

Needle Poke No. 6: I needed to have my weekly blood test done today (so I can have results tomorrow, before schlepping out to CA). Fortunately, the gal that did it was very good and needed only one attempt.

I will so not miss the needles. I will so never be addicted to anything that is injected.

Thursday, November 15, 2007

down with chemo BOOYA!

I'm done done done done done done :) :) :) :) :)

The video guy decided he didn't need footage of last night's concert, so he didn't come. Makes some sense - I didn't talk about band in the interview. He did come and do a little filming this morning. (The doctor came in to see me in record time this morning, and I waited for very little time subsequently to go to the infusion room. I think that had everything to do with the PR people being there...)

That's all. Joy rules the day!



P.S. The pic from dancing in the hospital is here.

Wednesday, November 14, 2007

video, chemo, upcoming stuff

Well, the PR people wanted to know if they could tape me dancing, so I set up something with Chad and they came and did video. It was a lot of fun :) and dancing requires enough concentration that I didn't much notice the camera. Once I finish treatments and get my body back in shape, I think I might take some dance lessons... maybe TJ will join me...

Tonight, Arizona Wind Symphony has a concert at the new Tempe Center for the Arts. It's a neat place, and I like playing there. The Banner video guy is coming to do more video.

Tomorrow is my LAST CHEMO!! The video guy is coming to do video of that, too (though he's not going to stay for the whole thing).

This seems like an awful lot of video for an internal newsletter, but whatever. It's turning into more of a little documentary. It's bordering on creepy. I will be interested to see what it looks like when it's done.

This morning, I went to have blood taken. While there, I asked the nurse a question about the anti-nausea pills they gave me last time (that didn't work at all). This is what I learned:

There are two different nausea receptors in our body. The IV stuff they give me floods one of those two, and works for about three days. The old prescription I have (compazine) works on the other receptors, but is mild. The new stuff they gave me last week works on the same receptors as the IV, which is why, when I took it on Friday, it didn't do anything.

She recommended that I take compazine starting right during/after chemo, then every six hours, whether I feel like I need it or not. It can be taken as often as every four hours, so if I'm feeling funky, I should move the dosages closer together. And now I know that the other stuff might work if I take it Sunday or Monday, if needed.

So, I have enough compazine left to take it every four hours for more days than I'm likely to need it. Here's to hoping it makes my last chemo weekend closer to the same as a not chemo weekend.

I have a PET scan scheduled for early Tuesday and an appointment with Dr. Radiology on Wednesday morning. I'm hoping the PET results are back in time for that appointment.

On that same Wednesday (a week from today), there is an art thing at the hospital for cancer patients, survivors, etc. I'm going to go over and paint after my doc's appointment. I am trying to think about how I would like to visually represent this journey, but so far, I got nothin'. If you have any thoughts or suggestions, please leave a comment. Even if I don't use it, you never know what's going to trigger a new idea.

A week from Saturday is the No Mo Chemo party. (I'm making CDs to play - if you have suggestions/requests, let me know soon :) ) I am so happy to be ending this phase of treatment. I was talking this morning to a guy who I've seen regularly at the office. He's been coming 'round since December or January, and his conversation implied that he had radiation before that. I don't know what kind of cancer he has or if it's the first time he's had it, but I'm glad that I'm not coming up on a year of chemo...

(If you are a local, you should have received an Evite for the party. If not, e-mail me, and I'll send it to you.)

Monday, November 12, 2007

yesterday's walk

The walk for lymphoma research was yesterday. It was a cool, sunny morning - great for walking or running. My team had five people in it (which was my goal), and we had a nice leisurely walk around the Phoenix Zoo.

Before the walk started, the event people took a picture of all of the survivors. They also took a picture of us as we started the walk. If I am able to get copies of those pics, I will post them. I don't know if that will happen, though.

Nothing terribly exciting about it, otherwise. Just wanted to let you know that we went and walked and it was nice :)

Thursday, November 8, 2007

fun things

Last week, I got to dance with my dance teacher in the atrium of the hospital in scrubs. It was a blast. Kind of a long story as to how it came to be, and I don't feel like typing that much right now. Here is one of the pics I got from the PR people today:



Since I'm posting a pic, I'll put in a little plug for Chad here. He's an awesome dance teacher. If you live in the Phoenix area and want to dance, I recommend him. He teaches ballroom, Latin, NY Hustle/Argentine tango, swing through Tempe Parks and Rec four sessions per year. His studio is Arthur Murray, at Indian School and 12th St (I think). More info at www.dancewithchad.com or at danceislifelifeisdance.blogspot.com

As a result of the dancing, PR called me and asked if they could do a patient profile of me for their November video newsletter. I went yesterday and was video-interviewed. It was a little scary and a lot fun. I'll get a copy of it in a few weeks.

That's all from here for now :)

Monday, November 5, 2007

the weekend went OK

Well, it's Monday morning, and I am feeling pretty good. No throwing up this weekend, though there was no shortage of nausea. It's all good. And it's only happening once more :) :) :)

I mentioned in my last post that I had a few links regarding cancer and obesity. Here they are:

http://news.yahoo.com/s/nm/20071031/hl_nm/cancer_obesity_dc_2

http://www.realage.com/news_features/tip.aspx?v=1&cid=18497


(As if there was not already enough to be concerned with for friends and family who are overweight (heart disease, diabetes, and all the side effects of both of those!), we add this in to the mix of potential issues. It's not worth it! That's really all I can say...)

One more treatment, on November 15, and then chemo-hell is over!!

I'll know some time in the next month what my radiation schedule looks like. I know I get a month off between chemo and radiation, which means the earliest radiation would start is December 17 (the 15th is a Saturday). I'm hoping to get in, get it started, and get it done.

I know you're all jealous because you want radiation for Christmas, too, but not everyone can have it... ;)

Next weekend is the walk for lymphoma that I'm participating in. If you would like to sign up to walk on my team (it's a 5K walk through the zoo) or would like to donate, go to this link:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=234461&lis=0&kntae234461=87F821BF21C341A6AF196E3423857601
(Click on "My Team Page" and then "Join My Team" to sign up to walk with "Heat's Herd.")

That's all from here for the moment!

Friday, November 2, 2007

chemo #11 - almost done

Well, yesterday was chemo #11.

My doc's appointment went pretty well. We talked for a few minutes about all my new nasty side effects last time around. He brainstormed a little (had I been in contact with people with a bug?) and gave me some new anti-nausea meds. He also told me if they didn't work, to call for something else, not just to sit around in misery. Good to know.

I should have had chemo at about 10:30. Just about that time, one of the nurses came out and said that they didn't have the results of my labs and that they were re-ordering them STAT but that it would likely take about four hours. She confirmed my phone number. I came home and went back later when they called. I'm glad I live nearby.

I had a few funky weird sensations that I've not had before while the drugs were being dripped. They weren't painful, but they caused me some concern, partially because they were mostly in my chest, and partially because I've never had them before.

If this weekend is as bad as last time, I'm going to ask the doctor when I see him how necessary this last treatment is. I'd rather not be really sick and just take the last one and be done ... though a weekend of throwing up might be worth getting out of some chemo. We'll see what happens.

Anyway, the doc and I also talked about weight. He said it is unusual for him to see a patient who isn't overweight. We talked about exercise and how great it is. We talked about how risky being overweight is as far as cancer is concerned, not to mention diabetes and heart disease. When I send out my e-mail update, I'll put more about that in there, including a couple of links that I happened to have read on Wednesday. (I'll post the links here, too, some time later.)

I decided to hold off on the update until this weekend is over, to see how it goes.

Feeling mostly OK so far.

That's about all from here. More after the weekend, most likely...

Monday, October 29, 2007

lymphomathon

I recently registered to walk in a 5K non-competitive walk at the zoo on November 11, with proceeds to benefit the Lymphoma Research Foundation. I was happy to see that the walk is not on a chemo weekend for me, so I'll be able to do it. And with the bits of exercise I've been doing, I am strong enough to walk 5K.

If you would like to make a donation to me or to my walking team (or would like to join my walking team), please go to

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=234461&lis=0&kntae234461=DE407ACC09B248F49127591768A9A5B9

(If you want to join or donate to the team, click on the blue "My Team Page" just above the photo.)

Thanks!

Tuesday, October 23, 2007

feeling better

well, after a not-so-pleasant four-day weekend, i am feeling better today. i went to the doctor's office to get blood taken (through the PICC), and they gave me saline for hydration. i felt much better afterwards. i'm able to eat a bit now, too. so, things are back on an upswing :)

Monday, October 22, 2007

don't read if you don't want to hear about puking

My stomach has felt pretty close to puking since Saturday. I've been making sure to eat kind of regularly, as being hungry only makes it worse. I've also been taking my anti-nausea pills, which, frankly, aren't having the desired effect.

The scales finally tipped last night. I went to bed feeling not good at all and woke up at one to relieve myself of some spaghetti and some oatmeal with raisins. Not the best items to have twice. I went back to bed, where I learned I could lay on my back and feel kind of OK, but as soon as I tilted to either side (didn't even need to get all the way over), I felt massively sick again.

Problem: I can't sleep on my back. I almost always sleep on my left side, sometimes on my tummy, occasionally on my right side.

So I laid until 2:30, when the tummy decided there was still a little left that it needed to get rid of.

When TJ woke up at 6:20 this morning, I was still awake and miserable.

It's a little bit better now - I have gotten some sleep, and I have been able to lay on either side without incident. At some point, I'm going to need to eat. Really not looking forward to that...

Mere typed words cannot express how badly I don't want the last two treatments to be like this — or worse. I think if it gets worse, he'll call off the chemo. I'm going to get blood taken tomorrow. I'll talk to the nurses about it then.

Good news is that, unlike at 2:30 this morning, I don't feel like I'm on the fast track back to the hospital. And I took my temp this morning and don't have a fever, so it could be worse...

There are people for whom their whole treatment is like this or worse. I would have withered long ago....

Friday, October 19, 2007

chemo #10, dumb nurse, new PICC, etc.

It was nice to have time off from the PICC and from the chemo. It took almost all four weeks before the smaller side effects went away (loss of appetite, various bowel issues, trouble sleeping), but by Tuesday of this week, I was feeling pretty normal. The chemo will take care of that, of course, but it was nice to have a couple of days of relative normalcy. I was very grateful to miss a treatment cycle — the Thursday that I would have had my last treatment I still felt pretty crappy. The body wasn't ready for more poison yet.

Ten down, two to go.

Yesterday's treatment was about the same as any other. I have decided that the treatment break gave my body enough time off that I will react to these last three more like I did to earlier ones and not more recent ones (the earlier treatments had less side effects that went away fairly quickly, were more predictable, and were generally less unpleasant). My body is agreeing so far.

I had the PICC put back in on Wednesday. It was an OK experience. Hurt a little while it was going in. Hurt much more for the rest of the day and yesterday. Today it's a little sore, but it's much better than it was. I figure that in another day or two, it should be relatively unnoticeable. By then, it will only have three-and-a-half weeks until it comes back out :)

The home nurses came today to change the dressing. Normally that would be kind of silly, since it's only two days old, but it was bloody and gross to look at, so I was glad to have it changed.

There were two nurses today — the one who will be here each week and the one who is in charge of this area. The one in charge of the area felt compelled to tell me several negative stories, the purpose of which I just don't understand. One story was about a woman she knew (or knew of?) who died from having a thoracentesis (the procedure I had twice to get the fluid out from around my lungs). One was a cautionary tale of how all treatments are different, even with the same person, and that all can be well for many treatments, then all of a sudden, all sorts of nasty things happen. Thanks. One was an explanatory story about why I might need to keep my PICC in longer than the end of treatment — because some lady had a PICC and finished treatment and then her cancer recurred and she needed more chemo. Is that story *really* necessary? I don't get people sometimes... But I shouldn't need to see her any more, so it's more OK than it would be if she was my regular weekly nurse.

My hair is growing back in nicely. It looks to be about the same color, texture and style as it was before: brown, soft, straight. No "chemo curl" here, unless it's delayed ;) Right now it's still thinner than it was before it fell out, but it's thick enough to look normal. It almost looks like I have this 'do on purpose.

Chemo ends in four weeks, Thanksgiving in five weeks, return to work in five and a half. Radiation likely to start in eight weeks — merry Christmas — and hopefully will end in twelve weeks ... and then it'll all be over and life can return to normal. I'm very much looking forward to eating well, sleeping well, having my regular energy and workout routine back. It'll also be nice to be rid of chemo-nose — this heightened sense of smell is particularly unpleasant with Peanut (and his accidents) around. And while I very much enjoy all of the cards that I have been receiving, it'll be kinda nice just to get bills and junk mail again. Funny, no?

Wednesday, October 17, 2007

looking back, looking forward

Well, the last rounds of chemo loom ominously.

I have had 4 fabulous weeks since my last chemo treatment, 4 weeks without the PICC in my arm. It's been good.

I didn't feel as good as I had thought/hoped/planned to feel during much of those four weeks, but that's just how it goes sometimes. Given how I was feeling two weeks ago, I was very grateful to be missing a treatment.

But now, within the last two or three days, I have all regular body functions back: I have an appetite, I am able to use the bathroom without a laxative, I am able to sleep without Benadryl.

Exercise still completely wipes me out, though I was able to bike to my blood draw yesterday morning without napping in the afternoon. Slept well last night. I have been able to go walk/jogging a few times, done some pushups and situps and other such nonsense. It feels good to exercise :)

Since I went to see Dr. Oncology a week early, it has been five weeks since I've seen him. Not sure what I'll say to him tomorrow, if anything.

I went and had my PICC put back in this morning. The PICC nurse, as it turns out, remembers me from when they tried to put in an IV that nasty day over the summer (when several nice ladies tried and failed). There are quite a few people in the hospital who remember me from that day, which is a bit embarrassing. I made sure to point out, when she was done, that I made a fine patient today. She laughed and agreed.

Anyway, it's back in. My arm is pretty sore. It was pretty sore last time, too, but it went away within three or four days. I suspect the same will happen this time around as well.

I am hoping that the break from chemo will kind of "reset" the body's tolerance, and that this weekend will be more like early weekends were and less like recent weekends. They've been hitting harder lately, and I'm hoping not to pick up where I left off in that regard.

I only needed to deal with a few completely stupid cancer/chemo comments at the wedding reception. Not bad... Most people just asked how I was and walked away after my stock answer: "I feel good, or I wouldn't be here." A few were interested in more information, which I'm happy to share, but most of my conversations this past weekend were three to four sentences long. I hate that, but that's how it goes sometimes. I figure, half of those people probably wouldn't have talked to me at all if not for cancer. Which is better...?

Happily, I did have some nice conversations with people who I haven't talked with in a long time. That was nice.

Back to the cancer thing.

My hair has definitely grown in quite a bit. I'm not sure if it's thicker than it was last photo time (about a month ago), but it's longer, and it almost looks like I have this 'do on purpose. We'll see where it goes from here...

And that's about all for the moment. Chemo tomorrow morning. Then only two more...

Wednesday, September 26, 2007

a pause for life

Well, my chemo weekend was about what they've been - didn't feel well, slept a lot, ate little, and was back to just about normal by Monday.

With the exception of hot tubs, massages, and vitamins, I am restriction-free :)

Yesterday, I rode my bike to get my bloodwork done. It was about 7 miles round trip, and my legs were pretty cranky by the time I got back, but it felt fabulous to get out and ride, and it was an absolutely beautiful morning - perfect for biking.

My hair is growing back in. It's still thinner than normal, but it's definitely more than what it was a month ago.

I am getting the PICC put back in on Oct 17 and have chemo again on Oct 18 - a pause in the action so I can attend my sister's wedding. (Then after that one, only two more - we're in the home stretch!)

I don't anticipate having any cancer-related news before then, so if you're checking in to see what's going on, and there's nothing going on, well, that's a good thing :)

That's all the news from here. Hopefully signing off for a few weeks - I am already enjoying the break!!!

Thursday, September 20, 2007

the PICC is out!!!

Just a little celebratory post to share that the PICC line is officially gone, at least for a while. I'm still covered in tape, but the hole should heal within 24 hours. (If not, I need to keep it covered until it heals, as it's a direct line to the heart, apparently, and we don't want shit in there.)

Yaye for having my arm back :)

Tuesday, September 18, 2007

back to where I started: the PCP

I called my PCP (Dr. PCP) today to make an appointment about my butt. Suffice to say, it's having some issues. Well, she doesn't have an appointment available until October 1; my butt won't wait that long. They could give me an appointment with another doc a week from Thursday. Anything this week? Well, another doc had a cancellation at 11:30 (phone call at 10:30), if you can make it then. OK. So I went. When I checked in, I asked if Dr. PCP happened to have any cancellations. Nope, sorry. OK. Bummer, but OK.

Well, when the nurse took me in, she said I would see Dr. PCP! Yaye! Apparently, she and the other doc switched their 11:30 appointments. She came in and we sat and talked for quite some time. Including a little inspection, we were there for probably half an hour or so. Unlike what I had thought was happening, she wasn't being kept up-to-date from the hospital on what was going on with me. She had results of the scans and tests, but that was all!! So she wanted to know what was going on and said she had called once but no one was home. I told her that if she ever did that to please leave a message and I'd be glad to call her back. She said that when she leaves messages, she tends to get panicked return calls. I told her no worries, please leave a message.

I gave her the long brief version of my cancer tale. (Really, I could talk about all the stuff that has happened for hours, easily.) She gave me a prescription, and I left.

Somewhere in there, I thanked her for sending me for an X-ray, even though it was "just in case." Who knows what would have happened if she had kind of blown it off... Two of the three people who I talk to at all regularly are in the boat they're in because a doctor blew them off. I am grateful not to be there.

Friday, September 14, 2007

starting to feel refreshed

I have, for the most part, come to accept the upcoming chemo treatments.

In the meantime, I'm kind of excited about having a break. I have chemo on Thursday, but since it'll be my last one for just about a month and the last one before I travel, I'll get my PICC out Thursday, too! Woo-hoo!!!! I am VERY excited about that. You can be sure that as soon as the chemo-crap days are over, I'll be back into full exercise mode. I can't wait!!

Then, when I get back, the PICC will only be in for about four weeks: they'll put it in just before a treatment, then two weeks to tmt2, then two more weeks to the LAST TREATMENT and then it comes back out :)

It will be nice to give my body a little rest from the chemo, too. I'm hoping that the little rest will enable more side-effect-less treatments for the end.

And with the timing of things ending, I won't have more than a week of radiation before Christmas, which means I should still feel good. And the break in between both means I'll be off all treatments during most of gig season.

I was considering changing travel plans or traveling on a chemo weekend to move the end up two weeks, but I think I've decided that it's only two weeks, and having those two weeks in the late-middle instead of off the end might be nice. A seventh inning stretch, if you will.

I think my hair is starting to grow back in. I'm getting it trimmed tomorrow and will know for sure then, but it looks darker to me.

Ahhhh... it feels good to be starting to be at ease with what's going on.

Thursday, September 13, 2007

word from the doc

(This is a copy-paste from today's e-mail)


I went in to see the doctor today to find out what the @#!% is going on.

He said that the radiologist recommended more chemo and that he himself agrees. He said it's precautionary at this point, but since I had a large mass, more is better, since we want the best possible outcome.

I asked if we didn't want the best possible outcome a month ago?

He said yes, we did, and he thought that maybe less would be OK but has decided against it. He said that there are never less than 4 cycles (2 treatments per cycle) but after that, it's grey. This means, of course, that when he told me in July that I had two more treatments (1 cycle) and I was done that he was wrong wrong wrong, as those two treatments were #5 and 6 (cycle #3).

He said that I could say no, take my chances on the radiation, and go from there.

He said that more chemo means less radiation, which is exactly the opposite of what the radiologist told me on Tuesday. When I mentioned that, he said that perhaps he had misunderstood.

Six cycles (12 treatments) is the max, so he won't have the opportunity to change it again, which makes it easier to believe this time.

I learned today that if my periods never come back that it's not just a cessation of menstruation, but it does induce early menopause (in six months to a year). This is slightly disconcerting because being pre-menopausal has lots of health benefits.

So the plan, now finalized, is four more treatments, a month off, some radiation and done. And actually hope to have periods again. How disappointing.

I have chemo #9 next week. Chemo #10 will be two weeks delayed (unless I decided to change my plane ticket for the trip back east, or to travel on a post-chemo weekend, neither of which is likely, though either would move everything else back two weeks which would be really nice...), which makes chemo #11 on November 1, and chemo #12, the final chemo, on November 15, one week before Thanksgiving. I won't know details about radiation until it gets much closer.

I will have my PICC taken out after the next chemo (YAYE!!!!!!!!!!) and have it put back in for the last three, after returning from NJ.

Here's to hoping that the treatments are effective, but only in their intended effect, and that the side effects in the mean time remain minimal.

Thanks for reading.

Wednesday, September 12, 2007

more chemo on the way...

(This is a copy-paste of today's e-mail update)


I recently got word that I am scheduled for 4 more treatments of chemotherpy. At one every two weeks, with a break for my trip back east, that'll take me up to the week before Thanksgiving.

So much for getting radiation for my birthday.

I am not at all psychologically/emotionally ready to deal with two more months of this. If I hadn't been told in JULY that I was just shy of being finished, it might be less difficult. But it is what it is and those are the cards I'm stuck with.

Reason given: I'm responding well. My interpretation: I'm being punished for not being horrendously sick.

I'm sure that at some point, I'll rediscover optimism and positiveness, but it ain't here right now.

Extra support would be amazingly fabulously appreciated.

Tuesday, September 11, 2007

more details

i had an appointment with dr. radiology today. he and dr. oncology should be talking tomorrow. i am supposed to call dr. oncology tomorrow to find out what they decide.

i told dr. radiology i'm ready to move on, mentioned that i've had two complete cycles (4 treatments) since my negative scan...

things i learned today:

if i have more chemo, it'll be four *more* treatments. because of my travel schedule, that takes us to a week before thanksgiving. i'm not mentally or emotionally prepared for this to go on that much longer.

more chemo will have no bearing on how much radiation i get.

dr. radiology does not feel that another pet scan is necessary. i told him i didn't care if i had one or not.

he has seen tumors that literally doubled in size overnight. *yikes!*

the problems with the heart and arteries, as a side effect of radiation, are not common, and keeping my LDL low is the best thing i can do for preventative maintenance.

the last three weeks, i haven't been sleeping so well. this is from the chemo (surprise), and i can take a benadryl at night, if i want, to help me sleep.

also, in roughly the same time frame, my vision has been funky. it's blurry sometimes. i learned today that this is also a side effect of the chemo and it will go away eventually.

that's all i know. i am assuming i will find out the verdict on chemo versus done tomorrow. keeping everything crossed that crosses.....

Monday, September 10, 2007

funny card

I got a funny card in the mail today:


When life hands you lemons, make lemonade.

But when life hands you a load of crap, don't make anything.


:)

Friday, September 7, 2007

soap box

While I have not had all of these vices, I cannot imagine any that are worth this.

I am friends with a couple of people who smoke.

I know lots of people who are varying degrees of overweight.

I am friends with people who "need" to have a nice tan in the summer ... one of whom had a suspcious but not cancerous mole removed.

It's not worth it.

The treatments for lung (smoking), esophagal (smoking), pancreatic (overweight) and some breast (overweight) cancers are not nearly as user-friendly as mine, from what I've seen and heard. Pancreatic cancer is still more or less a death sentence. The others can be treated and sometimes cured.

Melanoma, if caught early, isn't too bad from what I've heard, but it is also a "gateway cancer," making the recipient susceptible to lymphoma, which is the general type of what I have.

Let me tell ya, people, it ain't worth it. Take care of your body. It's the only one you get. When it doesn't work right any more, it affects not only you, but everyone around you. And I assure you that the effects it has on you won't make the people around you jealous (I don't think — anyone jealous?).

I asked the doctor what lifestyle components would be wise for me. He said that there are no causal connections between lifestyle and my particular kind of cancer (there are other connections), but less or no red meat and stay in shape are generally a good idea to stay away from the cancer bus. That was all he said.

Of course, there's no guarantee, but why up the risk if you don't need to?

Thursday, August 30, 2007

a few small bits

Went for a walk/jog Tuesday night. Most of it was walking, though at a brisk (for me) pace, with some jogging in the middle of it. I tried to do the last half block of jogging at a "strong finish" speed, only to learn that that speed is not much faster than I was already going, and that I really didn't have the gas for that. Lesson learned. My legs are still sore :(

The home nurse Wednesday morning said that the PICC line is OK, that if it was infected it would hurt and be red and swollen. A little sore is normal. Good to hear. Hoping hoping hoping that it's out in another week. I'd like to work on my arms.

I made an appointment with the oncology counselor to talk about the whole anger thing (since it's not so much like me). The appointment was yesterday. She didn't offer me any fabulous insights (though I made one small one on my own). I would think that this would make the session fall into the pile of "counseling sessions that weren't helpful." But it didn't. It felt good to process things. I've been processing them all along, but for whatever reason, this was different, and it was good. I made another appointment for next week.

Sunday, August 26, 2007

not directly cancer-related

If you or someone you know (besides me!) lives and pays taxes in AZ and would like to make a tax credit donation, let me know.

A tax credit donation works like this: you choose a school (or district, or a specific program in a school) to give some of your tax money to (up to $200 filing singly, $400 filing jointly). You fill out a short form and mail it with a check to the school district. It is applied to your AZ taxes as a dollar-for-dollar credit. (You can also claim it as a deduction on your federal taxes if you itemize.)

So you say "I want Heather's program to get the money." You send a check, the state gives it to me and also gives it back to you. Win-win!!

This whole cancer thing has messed up my plans for acquiring tax credit dollars, so I'm going to have to go door-to-door (computer-to-computer?), as it were.

If you are willing to give any tax credit money to my program, please click here for the form, and on the line where it asks where you want the money to go, write "Bethune Instrumental Music."

If you want more info about how I am planning to spend the money, leave me a message and I'll answer it :)

Saturday, August 25, 2007

misc social run-ins

A few random cancer-related run-ins...

We had our first community band practice for the season last week. It was nice to go and play :) It was nice to have a social outlet, too.

Anyway, one of the tuba players came up to me at the break, with the best way into a conversation I've heard yet: "Can I ask?" I said sure, and we talked, and another guy came over and the three of us talked and it was good.

Someone else at rehearsal came up to me as we were packing up to tell me that she'd been there and was out living life again. She had breast cancer 8 years ago, did the chemo thing and is fine. While I know that there are lots and lots of people who have had cancer and moved on (in a good way), it's always nice to see another.

While grocery shopping, an old guy in a little scooter came up to me and asked if I had breast cancer. No, Hodgkins. Oh, well, his wife had breast cancer 20 years ago and is still doing great.

I wrote a little card for "the new girl" who I sat next to at chemo. I took it when I went for my shot on Friday, knowing she was getting one, too, but I didn't know what time. I was there first thing in the morning and she wasn't there. One of the nurses took it and put it on her chart so she could get it when she came in. I offered, in the card, to be her cancer buddy if she wanted one. I told her that when I was starting out, I had no interest in any such thing and so I wouldn't be at all offended if she declined.

Today, I got a really nice e-mail from her, saying I really helped her unpleasant experience to be much nicer and that she'd be glad to have a chemo buddy. It turns out our next treatments should overlap, so I'll likely see her then. I hope her weekend is going OK.

I called the oncology counselor and left a message saying that I'd like to set up an appointment to discuss this anger thing. Though it has subsided, should it rear it's head again, I'd like to have some coping skills. I think I'll also talk about my anxiety about the side effects of the radiation, and see if she can help me get back on my positive track. I have some time on that one, though.

Thursday, August 23, 2007

I got to help someone today

I had chemo #7 today. While I was sitting in my chair, being infused, a "new girl" came in and sat down next to me. She was there with her husband. Through the course of talking, I learned that she learned yesterday that she had breast cancer. (The "How I Got Here" tale was pretty amazing.) She was still in between nervous, scared, "holy shit I have what?" and whatever else goes on inside. I remember it well.

She was really nervous about getting the IV put in. I asked her how her veins were for getting blood taken, and she said they were good. I told her that it shouldn't be a problem and that it's not too big a deal. She looked a little more at ease. When the nurse came over to put the IV in, I just kept on talking to her in an attempt to distract her a little. I know that it worked a little bit for me and hoped it would help her.

I mentioned that I've learned of many people who are breast cancer survivors, in hopes of adding to her collection of hope. We can all use as much as we can get. I told her that they're always happy to answer questions, no matter how silly the questions might seem, so if she has them, she should definitely ask.

We talked about side effects and the whole grand ordeal. She asked questions about my hair falling out, about being sick, about how I feel in general, etc. I was happy to talk with her about the whole thing.

Her meds took less time than mine, so she was done before I was, even though I had a head start. Before they left, they both thanked me for talking with them and giving them information, and we wished each other good luck.

Before I left for the day, a couple of the nurses thanked me for helping her.

It felt good to be useful :) I didn't want to come off as a know-it-all, and I didn't want to tell her that her experience will be the same as mine (so all of my statements had disclaimers before them), but her head was kind of swirling and she had too much and not enough information all at the same time. I'm glad we got to talk. I hope to see her again next time. We're both coming back on the same day.

In news about my body, Dr. Oncologist said today and one more, then another PET, then we'll see where we are. He was much more cautious with me today than he was the last time he talked about being done, which I appreciated. So, with fingers crossed, I'll hopefully have only one more treatment, and that will be on September 6.

He also, in a slightly different context, said that he had no doubt that I would be cured. That's a nice thing to hear from a tell-it-like-it-is oncologist.

I've already decided that this weekend will be the best post-chemo weekend I've had yet. Now just to make sure my body is on board with that...

That's the story of the day. More as it happens...

Tuesday, August 21, 2007

food

I am looking to change my eating habits a bit more when this is all over ... move a little closer to vegetarian (I've been inching there for years now) ... eat less processed food (decision made directly as a result of cancer) ... If anyone has any good vegetarian recipes that they want to share, I'd love to see them. (I don't like mushrooms or peppers.) Also, if you have any other thoughts/suggestions in this realm, I'm open to them....

Monday, August 20, 2007

not so angry any more

Basically, what it boils down to is, I've calmed down.

I haven't been angry or thought it all unfair or anything like that through this whole ordeal until over the weekend, when it hit with a vengance. Fortunately, I am feeling better now. Lots of things still irritate me perhaps a bit more than they used to, but they don't make me flaming mad.

For example, tonight, I was invited to go to a D-backs game with a friend who I don't see all that often. In the parking garage, I took the steps down from the 4th floor where I parked, and back up at the appropriate time. Both times, there were other people taking the elevator. "Silly people, take the steps" as opposed to "You lazy assholes who could be doing your bodies a teeny favor by taking the steps (especially going down!) but no, you have to take the elevator." Or something like that.

It's good. I feel more like myself and less like that nasty lady who was possessing my body over the weekend.

That's really all I have to say about that.

what's this blog about?

I have been posting on a private blog and decided to start one up that was public. I will bring over old posts from the other one that deal with this crazy cancer journey, for anyone with a lot of time and interest. I'll keep the dates on the old ones accurate, so it all makes better sense.

For anyone on my e-mail updates lists: I do post things that aren't in the e-mails. Whenever a post is a copy/paste or condensation of the e-mail, I'll warn you at the beginning of the post.

We'll see how this works...

cast of characters:
my husband is TJ
my oncologist is Dr. Oncology
my radiologist is Dr. Radiology
others introduced as needed


edit: I've moved over posts from July and August, and that's all for now. More later.

edit again: the moving of the posts is complete. As I was reading, I realized there are some holes at the beginning. If you have questions about anything, just ask :)

Sunday, August 19, 2007

baby steps back to fit

i did a glorious thing just now. i went for a jog :)

tj went, too!!

we only went half or three-quarters of a mile, and i was way winded and sweaty and my legs were protesting a bit and my legs and tummy were jiggling, but i went and it was wonderful. i haven't had a good sweaty workout since may 14.

it was a much-needed pick-me-up after an emotional-rollercoaster kind of weekend.

just thought i'd share :)

angry

The amount of anger I've had over the past few days has been somewhat overwhelming. It is not an emotion that I have had with regards to the cancer before now, and I really don't like it. I'm not entirely sure where it's coming from or why it's hitting now (well, I can hazard a guess on that one), but I'm looking forward to it going away.

I went to the mall yesterday to change our cell phone service provider. In the course of things, I needed to go to the second floor. There were steps nearby, so I took them ... at a run ... two at a time. I had no trouble making it to the top that way and was not terribly winded when I got up there. That made me happy.

And then I considered that probably half of the able-bodied people at the mall at that time would not be able to do what I had just done, and I've been on chemotherapy for 2-1/2 months. And my blood boiled.

There is an epidemic of people who, given their choice of things to do, would most like to sit around and watch TV. Why don't they have cancer instead? Then they'd have a good excuse for numbing their brains and deteriorating their bodies all day. There are a zillion people who eat nothing healthy unless perhaps by accident (or in quantities that make it unhealthy anyway) and generally don't give a rat's ass about their health or their body (except maybe through lip service). Why can't they have cancer instead?

[Where did the phrase "I don't give a rat's ass come from, anyway? I don't even have any rats' asses to give...]

So in addition to being sulky and generally sad about being alone most of the time, I have this new hostility.

Enter TJ, who sometimes takes care of himself for a week or so (until it wears off) who would rather sit and watch TV more than anything else, as far as I can tell (based on actions).

This is not good. It doesn't make for a happy home or a happy marriage, which just adds on to the already-too-long list of shit to deal with.

So I've got all kinds of crap going on right now, when I really just want to go back to being the way I was two weeks ago. I don't know how to do that.

Friday, August 17, 2007

musings on what's going on now

Some different things going on in my head these days ...

I went to a viewing (didn't stay for the funeral) for the husband of a friend. He died of cancer. It was weird weird weird weird weird to be there, knowing that at its most basic level, what killed him and what I have are the same. And the services were in friggin' Surprise, so I had a good hour each way to think about it :-P


I am struggling with being home all the time. I mean, I have occasional appointments and things, and I run errands as needed, but mostly, I'm just home. I'm doing stuff (usually) — there is no shortage of things to do!! — so I'm generally busy, but I feel pretty isolated. I see TJ in the evenings, of course, but I can't rely solely on him to fulfill my social needs. I'm not really sure what to do, though. People are busy, people are working, and I can't fault them for that, certainly — I'd be doing the same thing if I could. So how to fix it...?


Finally ... radiation is currently on the list of things that are slightly terrifying. I'm not worried too much about short-term side effects, mostly because they go away. Yeah, it would suck to spend a month sick from radiation, but it would go away. Side effects are listed below (a scan of something I signed yesterday... I don't know why it's crooked... click it to see it larger):





Scary, no? Dr. Radiation explained them all and mentioned a few that were pretty uncommon. I am working on visualizations and affirmations that will help my heart and lungs to stay healthy/flexible (basically, the radiation creates inflexible scar tissue on/around heart/lungs). I'm taking suggestions, as I'm having some trouble.

I'm also planning to ask at my next appointment if there's anything I can do that will help. For example, will a good cardio workout help (since it gets all those things moving)? If so, I will do a good cardio workout every damned day, regardless of how I'm feeling otherwise. What good is it to be rid of cancer if it's just replaced by heart disease?

Taking thoughts and suggestions. Also hoping that putting fear out here will help. It helped a lot last time.

Thursday, August 16, 2007

saw the radiologist!

So I was putzing around this morning at about quarter to ten, tallying results of my informal survey of locals' cell phone service providers, and the phone rang. It was the radiologist's office, saying I had an appointment for 9:30 this morning.

Um... as far as I knew, it was tomorrow morning, but when the scheduler gave it to me, she said Friday the 16th. When I mentioned that Friday was the 17th (as I was writing on my calendar as we were talking), she said it was for Friday. Oops. So the person on the phone and I eventually agreed that I'd just come in *right now*

Dr. Radiologist was quite a jovial man. We talked for a looooooong time (close to an hour!), and he explained many many things to me. He showed me the pictures from my first CT scan, done back in May, which was neat to look at. It revealed, however, what I've been hearing the last few weeks: there was a lot of cancer in there.

Basically, the radiation will be done anywhere that there had been cancer, so it will cover a pretty large area, and it will include radiation on the heart. It will be as little as possible, but since there was tumor around the heart, it's important to get that area, too.

Way back when they took lots of fluid out from around my lungs, they had mentioned that there were no malignant cells in the fluid. This is a good thing.

He explained that the lymph system basically just sucks up fluid that gets out of its container and puts it back where it should be. When something blocks the transport of said fluids (like a tumor, for example), the fluid builds up. That's what was around my lungs. Interesting.

I won't have any radiation until after we get back from NJ in October!!! He said that radiation doesn't start for a month after chemo ends, which would have put us at the week before the wedding. Instead, so we can go and spend the week, we'll just start a week later. Then I'll have probably four weeks of radiation.

He said I can work while it's all going on. He also explained the potential short-term and long-term side effects, which ones were more likely, etc.

I e-mailed the HR person in my district and asked if I could set up a time to speak with her about what I've learned and what my options are. I'm happy to go back to work, but if I get sick from the radiation, I don't want to need to work. Am I able to go back to work then change my mind? I don't know yet. Hopefully, she'll get back to me and I'll know more soon.

So my next appointment with Dr. Radiation is on September 11. If Dr. Oncology hasn't ordered a PET scan by that time, then he will. Notes and test results will be compared all around, and they'll determine what the best dosages are and how many I'll need. Treatments will begin October 15 or 16. Happy birthday to me.

That's the story for the moment.

Monday, August 13, 2007

do I look bad?

I went grocery shopping this afternoon. It's the weeks' worth of shopping, so there was a fair amount.

Normally, at Safeway, they ask if I (or anyone) want help with the bags out to my car. (The only time they didn't offer is the one time I would have accepted...) Today, they asked me three times. Makes me wonder how bad I looked today.....

Sunday, August 12, 2007

pressure to be a "changed" woman

I've had a few people mention this in passing, but this morning I got an e-mail explicitly asking:

"I am sure that you have reflected on life and have a different/altered attitude about it and about your relationships, etc... I would be curious if you (when you have time) could write back and just share with me a little bit about how this experience has changed your perception about yourself, your values, and your life."

Truth be told, I don't feel very much different. I might change that once I'm out and looking back.

I am happy that there are some others who are closer in touch now :) It's not a change in me or one that I really control (though I control half of it, I guess).

I feel more "invincible" now than I did three months ago. Isn't that funny? You always hear about people getting potentially terminal diseases and feeling more mortal. I did for a little while, but since I've learning that I'm beating the crap out of it, I feel really tough, for lack of a better word.

I have new confirmation that I am strong and can be positive through a short long-term hell.

I am grateful for my fabulous husband in a new/different context.

Overall, though, I generally liked the balance I had in my life, between work, friends, marriage, family, other stuff. I might tweak it a bit, but it's not like this has caused a major shift.

The woman I was talking to in the infusion room on Thursday commented on how neat it was to watch her partner's priorities change, spending less time partying and more time with family, etc. I think this is the kind of thing that people are looking for or assuming is happening with me, but really, as far as I can tell, it's really just not.

Friday, August 10, 2007

responding well to treatment

So I felt a bit like I was being punished for responding well to the chemo, since that was brought up today as a reason that I could deal with two more.

However, yesterday, there was a woman next to me in the infusion room who was there just to be hydrated because she's been really sick. After throwing up for a few minutes, she drifted off to sleep and I talked to her partner who was there. I asked if she was OK.

This is a piece of her story:

She has ovarian cancer, had surgery, had treatment, went into remission. Remission lasted 10 months. She's having more treatment (and maybe another surgery in there?). She'll likely go back into remission, but the remissions will get shorter.

I thought of this today because she was supposed to have six treatments of whatever drugs (different than mine) and only had three because she was reacting so badly to it.

So ... better to have two more precautionary treatments since I can handle it than to get only half of what was prescribed because I couldn't handle it.

You can't play the sympathy card with the cancer. It doesn't give a shit.

One of a million little reminders that while I am cranky about where I'm at, it could be way worse.

In the meantime, my coworker's husband's cancer killed him.

It wasn't me. It could be worse.

much happened today

I went to the doc's this morning for my neulasta shot. While I was there, I rapid-fired questions at the nurse, who gently told me that these were really questions for the doctor. I knew that already, but I didn't have access to the doctor. She said she'd go talk to him.

She came back a few minutes later and said that he said that they wanted to make sure that the fluid issue was taken care of. Hm. That's different than what he told me yesterday (and I haven't had trouble breathing since around the second treatment). She also said that since I'm responding so well to the chemo, that it would be OK to have two more treatments. The answer was really kind of worse than no answer, because I felt more jerked along. As I found out more little pieces, I felt more like I was getting more chemo to cover his ass. Funny, because all along, he's been very straightforward and told it like it is, and I've always taken him at his word. This shook that up pretty well.

I was tired today from not enough sleep (though I slept well), and I was cranky and emotional all day, and I was busy. I'm not sure if busy was good, really. Sometimes busy when cranky is good because it lets me forget that I'm cranky. Didn't work so well today. And I was tired, which made the cranky worse. The emotional part wasn't as bad as yesterday — I could talk about what was going on without crying today, as long as I didn't talk about it too long or too in-depth.


Here's the surprise:

At about 8:00, the phone rang. I answered it, and it was Dr. Oncology! He was calling to clarify what was going on. I'm not sure who, if anyone, talked to him more after I left this morning. It was very cool of him to call, and it gave me the opportunity to ask the questions that I didn't have the presence of mind to ask yesterday.

This is the deal:

He said that basically, I had a lot of cancer and it was kind of all over. He said it was localized (which I knew — all the tests for spread came back negative) but aggressive. He said that this kind of cancer responds best to chemotherapy, and that he wants to make sure that it's gone for good.

I explained that all of that completely made sense to me, but that I was surprised yesterday because it was contrary to what he'd said before, and I'd spent two weeks celebrating, and kind of had the carpet ripped out from under me. I didn't understand why it had changed. Basically, he thought about it some more. Well ... OK. I can accept that. I'm not thrilled about it, but on the other hand, he's thinking about it for more than the three minutes before he comes in to see me and the two minutes that we're in the same room.

He said that most people at this point aren't even close to talking about having only two more treatments, so he's thrilled to be even having this conversation. True. OK. He did apologize once or twice during the conversation for the emotional roller coaster (my paraphrase), which I appreciated.

I thanked him for calling — it was really good of him to do — and that was that.

Funky, no?

So I have two more chemo treatments. Some time before my next appointment, I'll meet with the radiologist and see where things are there. Dr. Oncology, in my appointment yesterday, asked me where I lived, and I said just three miles from there. He said that was good, and he'd set me up with Dr. Radiology, a radiologist in the oncology radiation office next door, who is "very good." From what I learned later yesterday, the orders were very specifically for that doctor and not anyone else in that office. So that's a good thing, I think.

The PICC line is a pain in the butt, but with two more treatments, I'm glad it's there. I'm going to call the office Monday or Tuesday, whenever I regroup from the post-chemo weekend, and ask if I'm allowed to exercise with it in. I'm not sure, because I know I'm not supposed to get it wet, and sweat might count as wet. We'll see.

So that's where I'm at. It's not as good a place as I thought I'd be in today, but it's better than where I was 36 hours ago. Though, really, I'll believe the "two more treatments" when he walks into the examining room and says, "Today is the last one." Fool me once ....

Another brief post to come...

Thursday, August 9, 2007

not where I thought I'd be

Well, I'm home from the doctor.

The PICC is still in.

I might not be done chemo.

Doc said that how much chemo is controversial and he and the radiologist need to go over my chart and determine if I need more chemo or if I'm ready for radiation.

More chemo, he said, means less radiation, which in the long run is a good thing. Chemo is better for you than radiation.

I wouldn't have emotional or psychological problems with this at all if I hadn't had a countdown to today, what was supposed to be the last day of chemo.

I wouldn't feel silly emailing and calling people who were planning to come to my celebratory dinner, telling them that we can still have dinner, but it's not so celebratory. (Well, it might be. I don't know yet.)

The office is setting up something with the radiologist, Dr. Radiation, and then they'll call me. I don't know if that means they'll call today, but I double-checked before I left, and they said they were working on it and they'll call me. OK. I have to go in tomorrow for a shot anyway, so if I haven't heard, I can ask then.

It's as if The Grand Puppeteer saw that I wasn't going to cry today, since I didn't need to have an IV put in, and thought something else to induce tears should be mixed in. This induced many more tears than the IVs do...

That's my story. I don't really like today's chapter.

Sunday, August 5, 2007

misc

The home nurse came after the inservice on Thursday, but she was here for an hour and a half! Very slow. Sheesh. One more home visit (from her? dunno) on Wednesday, and that'll be all for that little weird chapter.

The PICC line is getting annoying, but four days from right now, it'll be long since out, and I will be at my celebratory dinner, since THURSDAY IS MY LAST CHEMO!!!!

I don't know anything about radiation yet. I'm hoping to learn it all this week.

It is weird not to be gearing up for school, but I have so many things on my "to do" list that I will be able to keep busy the whole time I'm out, regardless of how long that is.

Musings on being a housewife: it's weird to be home while TJ is working. I have offered to make dinner each night (to which he replied, "Then I can just clean up every night." :) ) and to do the rest of the cleaning around here. It makes sense that I would do all that, as long as I am feeling well, since I'm home anyway. He said he doesn't want it to be 'unfair' and is happy to do whatever he has been doing (which is generally plenty), which is nice, but I can't see splitting things the way we have when we're both working being 'fair.' We'll see how it goes...

Wednesday, August 1, 2007

work, home nurses

I went to the "retreat" for work this morning. Really, it was just a big day-long meeting in an off-campus location. In any case, my goal in going was to meet the new teachers and let my face be known. That was successful, and I left after lunch :)

I was able to make an announcement with my happy health news, and people clapped for what felt like a long time. It felt good :) A teacher who I almost never talk to came up to me later and said that it gave her chills and brought tears to her eyes. It was sweet.

The (new 5th grade) teacher I was randomly paired with for a get-to-know-you activity turned out to be a cancer survivor. Kind of neat to talk to him for a minute.

I also got a compliment on the schedule. (I made the specials schedule for the building for this year.) It is nice to get a little recognition. I don't do it to be recognized, but it does take a lot of time, and I do try to make it so that it works well, so it's nice to get a little "good job" here and there.

Yaye!

The home nurses are supposed to come tomorrow, take blood, clean out the line, change the dressing, make sure it's OK, etc. I hadn't heard from them to know when they would be here, so I called today and left a message. There is a string training in the afternoon that I would like to go to, so the home nurse should come in the morning. I'm mostly hoping that I haven't slipped through cracks - I need to have bloodwork done tomorrow. I'll call again first thing in the morning.

More as it happens...

Saturday, July 28, 2007

PICC line pic

Here's what the PICC line looks like, for anyone interested...



The two things sticking up are taped to my arm, just so they don't get caught on things. Otherwise, they'd just be flopping around, asking to get caught on something...

All the tape is actually one big piece, with a sticky window. The whole thing is stuck to my arm.

The big white piece, closer to the "rabbit ears," is kind of a connector between the two ears and the single tube. The little white circle (harder to see in this pic) is over where the thing actually goes into my arm. The little blue tube goes from where you can see it, up my arm (inside) into my neck, I believe. They took an xray of my juggular after it was done to make sure it was in the right place, so I assume it's ending up in my neck.

The nice this about this, besides the obvious no-needles benefit (blood can come out and chemo can go in), is that the chemo doesn't burn (which it often does to some extent), since it's not actually touching those veins. Rock on! That also means I'm less likely to have issues with vein burn-out as a long-term side effect. (It's not really called vein burn-out, but that's the best I can do without looking it up.)

So I'll have it for two weeks. They will, as far as I know, take it out immediately following my next chemo appointment.

Friday, July 27, 2007

I did not meet my goal :(

It was not a happy day at the doctor's office today.

First nurse, who was called in to get me last time (she had the successful third stick) started. She tried twice and induced a really serious amount of pain.

She got another nurse who tried once and said she didn't want to try again.

She got another nurse who said she "can get anyone." I am her nemesis. She tried twice, to no avail, then recommended Ativan, an anti-anxiety pill. So they got a script for it, TJ went and got it, I took one. I think the nurse tried again too soon after me taking it (12 minutes), so it didn't do much, and she missed.

They called to have a PICC line put in right away, so I went for that.

The PICC nurse had been one of the ones to try back in May to get in an IV, and she remembered me and my veins. In any case, she was fabulous. The procedure was pain-free. Even injecting the anasthetic didn't hurt, and that usually burns like mad.

I went back to the infusion room and got my chemo, ending only an hour after the office was supposed to close. (Thank you to whichever doctor stuck around 'til I was done!!) So I was there from 10:30 'til 6. Long day, fraught with much pain and anxiety. :(

The PICC line will stay in until my next treatment. After that treatment, they'll take it out. It's a different kind than the last one I had. If I need a scan, I'll need a separate IV, because this won't accept those kinds of injections, don't know why. But I don't think there will be any scans, so I don't think it matters.

The results from the ultrasound yesterday came back negative - there's no perceptible clot. But I'm still swollen, so I think there is still something in there. In any case, I'm still on the bloodthinners, to help prevent a clot from this new PICC line, so they'll continue to help the other arm as well.

Two more weeks, no more needles :) At some point, I'll take a picture of the PICC line so you can see what it looks like.

today's small goal

I have my chemo appointment in about 45 minutes. This is today's goal: I will not cry when they try to put in the IV.

This is what usually happens: they try once and it doesn't work. I'm OK. They try again and it hurts like a bitch. I'm OK. They go to get someone else to try (I think they have a two-stick maximum per nurse per patient per day). While they're going to get someone else, I cry.

I don't cry because it hurts (it does hurt, but really, not that badly, and not for very long), but more the psychological "here we go again with the needles." Or something like that. I'm not sure if that makes any sense.

Then the second nurse comes over and tells me that when I'm upset, the veins constrict which makes it harder ... which I certainly know by now. I could probably not cry by that point, but I'm not convinced that looking calm will do anything to the veins. I think I need to actually be calm.

In any case, they always get it on three. When I went for my PET scan, it took three tries. I cried after two.

The crying is embarrassing, frankly, and it sure would be swell to stop.

That's the goal for today.

Thursday, July 26, 2007

ding, dong, the cancer's dead!

YAYE!!

The doctor gave me more detail about what the CT/PET scans showed last week.

The mass has been reduced, now measuring 2.6 by 6.3 by 8.6 cm. I didn't learn until today that I had had a whole lot of cancer. I'm glad I didn't know (though I'm generally not a fan of being in the dark) — I think it would have been harder to be unabashedly optimistic. Also, the fluid around the lungs is gone (duh — I can breathe now), and the fluid around the heart is almost gone.

He would like me to have two more chemo treatments. One will be tomorrow and the other is scheduled for August 9. I will need to meet with a radiologist at some point and learn about that end of the treatment, etc. And then I'm done and cancer-free and on my way! :)

(For anyone keeping track of the schedule, chemo should have been today. However, when I went for my weekly blood draw yesterday, they couldn't get any out of me. No blood test = no chemo. I went back today, after chugging water yesterday, and it flowed freely. Chugging water again today, since I'm going to need an IV tomorrow...)

In the meantime, I have an ultrasound this afternoon to check in on the dumb blood clot. I am also greatly looking forward to that little bitch being out of there so I can eat spinach and exercise.

No more cancer :) No more cancer :) No more cancer :)

I was going to say something else, but it has left my brain. I'll come back later and add it if I ever remember what it was ...

Monday, July 23, 2007

good news :)

(This is entirely a copy/paste from the email update.)

I had my PET scan on Thursday (thought I was having a CT scan, but I was wrong). They're similar and use what appears to be the same kind of machine that makes me glad I'm not claustrophobic. Anyway, aside from the three attempts to get in an IV, it was an easy procedure.

I called the doctor's office on Friday morning, just before we left for San Diego, and asked them to call my cell phone whenever they had the results, if they were able to disclose them over the phone. No phone call Friday, so I assumed I'd just find out on Thursday.

Well, on the way home today, there was a phone call!! The nurse said that they received the results and Dr. Oncology reviewed them and the mass is significantly reduced and is responding well, and that there is (still) no concern in any other area. This is the first scan that was whole-body (the last one was whole torso).

I will get more details from the doc on Thursday (like: how much reduced? how many more treatments?)

I was disappointed to learn that it was still there at all, but I really can't complain. I was a bit nervous that it wasn't doing anything (slight nervous, didn't surface too often), since I am, for the most part, feeling pretty well. Which brings me to ...

The paperwork to excuse me from work was handed in last week. It feels weird not to be going back to work, especially since I feel pretty good most of the time. I'm sure one day with kids all day would kick me really hard onto my butt. Medically, they don't want me to get sick (in an elementary school? never!), because I can't take regular meds with the chemo. Infection = hospital stay. I love teaching and love the kids, but not enough to risk going back to the friggin' hospital.

That's my story. I'll let y'all know on Thursday what I learn at my appointment.

Wednesday, July 18, 2007

more on hair

So many hair experiences in the last week...

The first one I posted about already: getting a compliment on my hair as it is.


On Monday, when I went for my neulasta shot (the happy shot that keeps my white blood cell count high), I was waiting at the desk for the nurse to come back with an answer to a question, and another woman walked over, also waiting for the nurse to return. Her hair was short and kind of thin, but it was long enough to be combed. I remembered how thrilled I had been to get a compliment, so I thought about what to say.

"I love the color of your hair." It was a fabulous shade straddling blond, brunette, and red.

"Really?"

We got into a conversation about her hair and her hair journey. It is in the process of growing back in a different color than it was, and she's recently decided that it's long enough to go without a wig. It started growing back even though she's still undergoing chemo. We ended up talking for 5 or more minutes, as I had another question for the nurse that sent her looking for an answer (yes, I'm one of those...) It was a really nice chat which did eventually deviate from hair, but never from cancer-related things. She gave me a hug and offered me prayers before she left. It is an interesting comraderie.


Last night, TJ and I were out to dinner. Some 13-ish-year-old boys, who were just getting ready to leave a table just in my line of vision, were pointing and laughing. I stared them down at the table and they stopped. I followed them with my eyes until they had left the restaurant and were out of sight. I'm used to people looking at me, or taking double-takes, but sheesh, people, no need to stare, and certainly no need to point and laugh. Stupid kids? Yes. Hurt feelings? No. Just irritated.

I told TJ today that I am now prepared to have a mohawk or purple hair or anything crazy, as I'm getting used to people staring anyway...


But ... my hair is growing. The sides lay flat against my head. The top is uneven. In between the long hairs on my legs there are new stubbles. I would have thought this was much weirder, but the conversation with the woman on Monday normalized it a bit.

One of the women in the group of waiting-room-complimenters said that her hair had not all fallen out, and when it grew back in, it was exactly the same as when it fell out. I wonder if mine will do the same. I wonder what it'll do at all. I don't care too much, though I am hoping to some degree that it's at least as thick as it was before.

Friday, July 13, 2007

how much do I suck?

So when I was in the hospital and my poor lungs were being crushed by fluid, I had a little breathing do-jiggy that I was supposed to use 10 times an hour (in any number of sets and reps I wanted). I put it in my mouth, took a deep breath, and measured where the little arrow went up to. I call it my suck-meter: an objective measure of how much I really suck.

In any case, I couldn't do it much a while ago. I brought it home and used it a lot when I first got here, monitoring progress. Then I had some pains in my side and couldn't take a deep breath. Then I tried it again the other day, and I came close to maxing it out. I think the lungs are clear :) Which, ironically, means I really suck.

:)

Thursday, July 12, 2007

chemo #4 and TMI

OK, first chemo #4, then some chatter about girly things going on. I'll warn you before I get to that part, so if you don't want to read it, you don't have to. I'll leave it as the last thing.

Yesterday's blood draw was pretty easy, which I am attributing to being super-hydrated. Today's IV was another 3-stick deal. The first one got the vein but leaked from the vein (no good). The second one looked good and they started the anti-nausea drug through it, and it started to leak (internally). Thank goodness it wasn't the chemo!!!!!!!!! The third one was good to go.

I was in the waiting room and was complimented on my hair!!! It's very thin, but a little group of people who had been talking to each other when I sat down said that when I walked in, they noticed that I wear it well. The one lady was talking about her wig (it was a good one!). Fun people.

I saw my doc again :) As usual, I had many questions, including some I have asked other people in the past. Some of his answers were different.

I am allowed to exercise as long as it is not vigorous. I clarified, and I can use free weights, do push-ups, sit-ups, that kind of thing. Yaye!!! I will need to obtain some small equipment for home. I have lost a lot of tone, so I'm hoping that these light exercises will bring that back. (I feel so squishy!!) I can work on the muscle and endurance again later.

I can go back east for the wedding. I will buy trip insurance with the plane tickets, just in case (think positive but be real), but that was good news.

Even with the happy new shot, I should take neutropenic precautions (mask if I go out, no fresh produce, etc.) until I have the results of my weekly blood test. This is not what the other doctor said, but it makes a lot of sense to me, which is why I asked again. When I go on Wednesday next week for blood tests, I will go early in the morning and ask if there's any way to get the results the same day so that my Wednesday evening is free. We'll see...

The blood thinners are finally regulated. Just need to stay consistent. For anyone to whom the number is meaningful, it was 2.4 today. All other numbers were in the normal range except white cells, which were high.

In general, it seems that the side effects are getting a tad worse, but they're more concentrated and I'm bouncing back from them faster. I am changing my diet around a bit this weekend to see if that helps at all. But the doctor asked me a string of "have you had any [fill in the potential side effect]" questions today, and the answer was no to all of them except vomiting (just that once). He said that I'm handling the chemo really well :) I guess this isn't necessarily normal, but hey, I'll take it! I'll attribute it to being in good shape ahead of time and having a good attitude (which is helped by the support system -- thanks!!)

He said he'd order new pictures to be taken in the next two weeks, so soon-ish, I'll have more news as far as that is concerned. The tumor is gone; the picture just needs to show it.


And now, for some girly things that have been going on. Stop reading this post now if you don't want to hear about it.

During the fertile part of the cycle, there is longish, sticky discharge. It helps the sperm. Anyway, that all started coming about the time it was supposed to ... and hasn't stopped. I asked if it was a problem and the doc said no, as long as it's clear, so I won't worry about it. Other than it maybe being a problem, it doesn't bother me.

I was told that periods would stop. So since my last period ended on the day I started chemo, I expected that to be the last of it until all this nonsense is done with. Happy side effect :) Imagine my surprise when Aunt Flo came to visit last week! Not as bad as a normal period, but still several days. The funky thing was ... the evening before it started, it tinted the discharge to a brownish color, which flipped me out, since I didn't know what was to come and those two things don't norally come at the same time. But it all turned out well in the end and if it happens again, I'll know what it is.

Finally ... I have the floppiest boobs ever. I can fold them in half so the nipple doesn't even show. They were much larger when I was heavy. They lost weight but didn't lose skin, so they're really just kind of empty balloons hangin' there. Well, in the last 3-5 days, they've filled in quite a bit and don't fold over any more (still floppy). I asked the doc about it today and he said it's the medication.


So ladies, if you'd like to lose weight, stop your periods (so they tell me) and get bigger boobs, just do chemo! Ask your doctor if chemo is right for you! (May cause nausea, fatigue, mouth sores, loss of hair, loss of immunity, heart disease, sterility, and lots of little holes in your arms.)

Wednesday, July 11, 2007

attitude

I got this in an e-mail a couple of weeks ago from a coworker and thought I'd post it here. Enjoy!


Attitude

There once was a woman who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head.
"Well," she said, "I think I'll braid my hair today!"
So she did and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she had only two hairs on her head.
"Hmm," she said, "I think I'll part my hair down the middle today!"
So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.
"Well," she said, "today I'm going to wear my hair in a pony tail."
So she did and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head.
"YEA!" she exclaimed, "I don't have to fix my hair today!"

Attitude is everything.

Be kinder than necessary, for everyone you meet is fighting some kind of battle.

Friday, July 6, 2007

another weird sensation

I had blood drawn yesterday. Once a month, I have a complete blood panel, which means three tubes instead of one and a mini one. I was concerned, given the state of the veins, that they wouldn't be able to get it in one stick, which would have been a drag.

I keep seeing the same phlebotomist (I request her now), so she knows what's going on, which is nice.

She used a little needle (in my hand) and a syringe to suck the blood out and was successful in one try :)

But what was weird was that in the vein, I could feel the suction from the syringe. Funky.

Wednesday, July 4, 2007

food, time, exercise

FOOD

Well, I reached a breaking point with food yesterday. This is ultimately a good thing, I think.

As of early May, I was eating five small meals a day, wasn't eating sweets at all during the week (exceptions when there was something tempting in the teachers' room, though the amount of tempting things had significantly dwindled), was working out (lifting, cardio, or both) five days a week. My eating was balanced, I didn't crave junk food, enjoyed many junk foods less when I did eat them (certainly not all!). Missing two days in a row at the gym had noticeable effects. It was good.

Going into the hospital essentially for three weeks (though I had 3.5 days at home near the beginning of it) knocked all of that to hell, of course. Taking care of the cancer was more important anyway — I'm not complaining.

The chemo had (has) all kinds of effects on me. The first round caused an eight-pound weight drop in four days. Besides beginning just to eat too much to try to counteract that, I reincorporated sweets that I still loved but didn't eat much because of caloric content (i.e. Nestle's chocolate chip ice cream sandwiches YUM!). Also, I wasn't allowed to eat fresh fruits and veggies or things that were crunchy or hard. Lots of tasty junk food fits within those parameters. As time has worn on, the weight-loss effect of the chemo has diminished (though not gone away completely). I also decided that it's better to be underweight (which I'm still not close to) than to have diabetes, and so I cut down on the crap ... but there's still plenty around.

Finally, yesterday, I ate more crap than worthwhile foods and decided that I need to get back into eating well. I will be eating more than I was used to, since the chemo apparently does strange things to my metabolism (wouldn't it be nice if that was a lasting side effect!) TJ has started keeping a food journal, so I'm keeping one with him now and really cracking down on myself. I feel good about this decision.


TIME
It's the summer. Regardless of treatment, I have a habit of putzing away summer days, regardless of having plenty of things I could be doing. While I was still working, I had come up with a plan to get things done every day. That plan, of course, went out the window long ago.

But since it is looking like most of my days will be good days, I need to not putz time away. Yesterday, I had a lot of energy and got a lot of things done, which made me feel good. I would like to do that more regularly. So what I did earlier today was to make a list of things I'd like to get done around the house (can't be outside, really — not supposed to be in the sun). I broke the larger projects down into smaller component pieces, though I'm sure some of them aren't broken down enough. Every day that I am feeling well and am home, I will do at least one thing on the list. By the time I go back to working, the list should be done :) I also made a mini-list of things to do every day that I feel good, which is more in line with my original plan for the summer. The first thing on the list was to make the list, and I did that today, so one thing is done ;) We'll see how it continues to go...


EXERCISE
Mom called today. While we were talking, she confirmed what the doc had said about not exercising for four weeks while the blood thinner levels stabilize. (I was more checking to see if it's something I should ask my doc when I see him, or if it's a standard precaution. For those unaware, my mom is a nurse in our family doctor's office.) In any case, I asked if that means I can't go for walks or can't go to the gym. She said walks are fine, and I clarified that they're still fine, even if they raise my heart rate. So I think I will add to my list of things to do every good day: take a walk. Then when exercise comes back, I'll already have a little space carved out for it, and I'll be in better condition than I would be without a month of walks. Yaye for a little exercise :)

Tuesday, July 3, 2007

hair ... again (or still?)

Well, I had some clothes and things that were just coated in hair, so I tossed them in the wash today, anticipating the hair leaving them. Whie there is less hair on these items now, there is not no hair on them, and there is additionally hair on things that were also in the wash that were previously hair-free. *sigh* I'm going to need to just go at everything with some masking tape and pick it all up that way. Bummer.

My hair is just barely long enough to grab ahold of with fingertips. It's looked the same for several days, but it comes out in bigger clumps again now (chemo working again? took a break? who knows?), so I guess the rest of it will go soon.

The water in the shower feels a little funny, as does driving with the windows down. And when I scratch an itch, that feels weird, on both my scratching finger and my head. Otherwise, not much difference between buzzed hair and buzzed-but-mostly-gone hair.

Monday, July 2, 2007

chemo #3 and the weekend

Well, the third round was on Thursday. As with last time, it took two nurses and three tries before they had a functioning IV. I could do without that drama.

I had questions about diet and the blood thinners and so on answered at my appointment ahead of time, which was good. My doc is on vacation, so it was a different doc in the office. Some of the questions I'll have to ask again, 'cause the answers are based on the doc's opinion...

I still don't know when they'll check for progress (that is an opinion question, apparently). I'm hoping it's soon. I will ask my doc when I see him.

Until this past weekend, I had been pretty tired but not sick. Yesterday I threw up for the first time in this whole process. I'm not sure if it was just my stomach, or if it was a stomach-what I put in it combo. Pineapple juice. Yum. Not bad the second time, either.

I have been having trouble staying hydrated, as water at this point tends to taste nasty. (They said some things might take on a metallic taste. It's a side effect.) So in real life, I drink water, and that's about all. Sometimes I drink tea, though the caffeine isn't good for treatments, so I haven't been. I like chocolate milkshakes and strawberry smoothies, but I'll weigh 1,000 pounds if I get all my hydration from those. The current solution? Otter pops :) My stomach tolerated them yesterday, as did my mind and mouth, so that's the current working plan.

My veins are having a tough time of it, and the phlebotomist on Wednesday said that they're getting ready to collapse. All healing energy is currently being directed to the veins. I need them to stay in good shape until either this is all done or until the blood clot goes away and we can use both arms, whichever comes first.

Many people came to visit this weekend while TJ was gone, which was nice. I made it to a friend's housewarming party, which I was glad about, too.

I think that's all from here for the moment. I thought there was something else, but I can't remember what it was. I'll post it later if I think of it.

exercise

The other thing I forgot ...

I asked the sub doc about exercise, and when I can. He said not until 4 weeks of the blood thinner being regulated, which it's not yet, which means at least another 4 weeks. I'm hoping that this is another opinion thing and that my doc has a different opinion when I see him in a week and a half.

TJ and I went for a walk tonight, and it was soooooooooo nice to get out and about. I wanted to take off (though I'm sure I couldn't have run very far), but I didn't. Heart rate might have been higher than it's supposed to go, just from walking. I'll have to find out exactly how much increase is OK. Detail-oriented? Sometimes...

In any case, I am looking forward to getting back into working out, even if the workouts are pansy compared with what I was doing before...

Wednesday, June 27, 2007

another "not me" moment

I just got an e-mail from a work friend. Her husband has cancer, which they've known for a while. I don't know other details about it except that he's kind of weak and isn't working.

They went to PA for vacation.

Her message said that on Monday he had emergency surgery: "cancer everywhere, huge mass, about the size of a football"

Wow. Happy vacation.

Again, my initial reaction was, "Oh my goodness! Poor them!!" I sent her a quick message, not knowing if she'd get it or not (she doesn't check e-mail often anyway and is on vacation).

Second reaction: "It's not me."

I hope they're OK and able to come home soon. She said one to three weeks. So now, since my diagnosis, three people I am two or three degrees removed from have died (I only posted here about two), and one person had emergency surgery for a cancer mass the size of a football.

While I appreciate the reminders that I'm in good shape, y'all can knock this off now! I remember! Sheesh...

Saturday, June 23, 2007

hair

Well, the hair is going. I expect that in another week or less I will be bald. Actually, I hope it, 'cause right now it's kind of patchy and ugly.

Also, on my left side, you can see all the veins in my upper chest into my shoulder and part way down my arm. I figure it's a side effect of the blood clot and will go away when circulation returns to normal.

Speaking of circulation, I want to have in writing somewhere that I am sure, based on how I feel, that the changes they made to my blood thinner were wrong and that they will go back to the dosage they started at. (I was on the shots when they did the first blood test, and that was twice as much meds as the pills, but they cut the pills in half (1 instead of 2 per day). I think they should go back to two a day.) I am going to call and leave a message and request (*gasp!*) a blood test to be read stat on Monday. My arm is swelling again and it's getting more uncomfortable, and I don't want to wait until Thursday for them to fix it.

Otherwise, I've been feeling good and have gone out several times this weekend (yaye!!!). It's nice to be kind of normal. The sad news is that I'm not allowed to exercise until the swelling goes down. Another reason to go in on Monday! 'Course, by the time it makes a difference, I'll have another treatment and be on the couch for several days .... that's OK. I'm going anyway!

Here is a pic that I took of the inside of the shirt I was wearing. All those hairs on it are just from putting it on and taking it off...





I went to see the wig and hat lady yesterday. I got a wig (with a coupon for a free styling - I'll post a pic after someone has made it decent-looking) which I'll wear only for fun. It's not very comfortable. I also got 4 hats and a scarf. I like my hats. I used to wear hats a lot, then I stopped wearing them so much. But I look good in them. Perhaps this will start a new personal trend.

I have gained back some weight, so I'm not as skinny. The cycle isn't so frightening to me any more. (Looking to lose weight? Try chemotherapy!)

That's the story to date. More as it happens. More pics when either I'm completely bald (or close) or have my wig styled...