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.

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 :)

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.

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...

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....

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 :)

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.

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.

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.

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.....

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.

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...

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.

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...

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...