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...

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...

I can smell dust

This is an interesting little thing. Well, interesting to me :-D

I am taking neutropenic precautions today, because according to the schedule, I should have low white cell counts. Now, I had a shot last Friday that is supposed to last 10 days that should help those little dudes build up, but it's the first time I've had this kind of shot, so I don't know if it's working. I had bloodwork this morning, so I'll know soon whether or not I need to take precautions. (Here's to hoping the counts are high enough — if they're not, it means another shot this afternoon or tomorrow or both.)

Anyway, when I ventured out of my safe little house today to get the bloodwork done, I wore a face mask. It helps keep out stuff that should stay out. (I did this last cycle, too.)

When I got home and took it off, I could smell dust. (This happened before, too.) It really is kind of amazing to me. I guess it means the mask is working, at least to block out the dust :) (now I'm sneezing, but that should stop soon).

That was all.

I still have muscles!

I decided last night before going to sleep that I was going to do a little bit of exercise today here at home. I figure that a little is better than nothing, even if I am much weaker than I was. It should help with self-esteem, too, as I feel so squishy, even as my weight drops...

As it turns out, I still have some muscles! I can still do pushups! I fully expected not to be able to do more than 2 or 3, but I easily did two sets of 10 and could have kept going! I think I'll do some more when I get off the computer, and add some other things, too.

(My blood is too thin - they called today and told me not to take the coumadin today - so I'm slightly apprehensive about what the ramifications of that are, as far as getting blood pumping and inadvertent bruising. But I don't have any bruises outside of needle pokes, and I haven't had bloody noses or anything, so I should be fine to do some exercise.)

I think I will buy some exercise things to use here at home (bands, ball, disc, maybe heavier dumbbells (I have up to 5 lbs.) and use them on days when I'm feeling decent. ("Decent" is most days at this point — just not the few after a treatment.) They'll still be usable after all this nonsense is done, too. My grandmom had little bicycle pedals that she could use in a regular chair. I might look into those, too.

Woo-hoo! What a surge!

another death ... and it's not me

A dear friend's sister committed suicide sometime between yesterday and today. She went out yesterday "to buy cards" and never came back. They found her today.

I feel terrible for my friend, though the sister has a history of attempts, so it wasn't out of nowhere. Does that make it easy? No, certainly not, but perhaps a bit less startling than if it had come out of nowhere.

But I'm in a stage now where, whenever I hear of someone dying, a thought that always runs through my head is, "It wasn't me." Not that I'm expecting it to be me. But still ... it wasn't me.

fear

In general, through this ordeal, I have been upbeat about things going on (not including the needles). I believe that I'll get through it -- and in less time than the docs anticipate. Life will be back to normal ASAP.

But, every now and then, I have a strong image of a memorial service ... one of those where there are a lot of people all shaking their heads, saying what a shame it is, how she was so full of energy and was doing good things, etc., etc. You know what I'm talking about?

And then I say to myself, sure, that happens, but it won't happen to me. I'm well on the road to recovery already.

And then a voice says, "No one thinks it will happen to them. Especially not the upbeat, positive people..."

And that's where it ends. Well, I guess it's not, because it does go away and leaves me alone for a while.

I'm hoping that taking it out of the dark corners of my mind and putting it out in the light will help to diffuse its power. I haven't decided yet if I'm going to e-mail it, too, or just leave it here.

Accepting passing thoughts......

hair

has started to fall out.

we'll see how long it takes before it's all gone. maybe i should take pics along the way.

home again

I'm back home, as projected.

I will be giving myself blood thinner shots in my tummy twice a day for a week, by which time the pill blood thinners will start working.

I have chemo tomorrow.

My parents are coming out tonight.

I am feeling much better :)

the latest drama

Well, last night around 9, I started to have pain in my knees. By 9:30, it was pretty close to intolerable. TJ took me to the ER.

Skipping for now all of the fabulous details, basically, they did ultrasound of my legs, looking for blood clots: there aren't any. (This is good.) They did x-rays and never mentioned them again, so there's probably nothing on those, either, though I will inquire.

With morphine and later percocet, the pain went away. A minute or two ago, my knees started to get a little achy, but they've been fine all day.

Until that minute or two ago, I had attributed the pain to psychosomatics. While disturbing that I could create that much pain (it really was amazing how much it hurt ... and how I couldn't do anything about it), it was kind of reaffriming: if I can create that kind of pain, certainly I can significantly speed up the disappearance of a tumor :) and lung fluid :)

and now, a blood clot :(

My left arm was swollen, so they did an ultrasound on that, too (that was going to be done this morning, regardless, just not in the ER). There is a clot. Dr. Oncology said it's not a big deal (to the docs, though he realizes it's a new thing for me), and that with some meds it'll go away. So I'm on some kind of blood thinner (don't remember) and get it daily as a shot to my tummy. Not exciting. So it goes.

What is it from? The PICC line. The thing I was so happy to have a couple of weeks ago so they wouldn't have to poke me any more is having the residual effect of more pokes. Irony is really not necessary.

But the good news of the day was that I'm not neutropenic any more, which means I can eat normally for the next week-ish. Yaye! I miss fruits and veggies and hard crunchy things...

So I'm in the hospital and will be here overnight. Doc said there shouldn't be any reason to be here past tomorrow morning. We'll see...

I am alive

As a second-grade student of mine once sang:

I am alive
I am alive
I am alive
Just like a little turkey

:)


I post this because a friend called this morning to say that his step-mom had died unexpectedly last night.

I did not. Nor did TJ.

"Cheers" to reminders of things to be thankful for....

misc musings

I am normally a healthy person. I don't like to take medications. In real life, I take a multivitamin and calcium. I don't take anything else, except an occasional Advil if I have bad cramps and need to be functional.

So I'm taking chemotherapy, of course, which I wouldn't dream of denying in the name of not taking medicine. I'm also taking something for my kidneys, to help prevent stones. I'm taking a stool softener for my poor inflamed butt. I have a painkiller for whenever I need it (been taking it just at bedtime for this dumb pain in my chest that is getting better .... slowly).

So many pills. And I'm not allowed to take the multivitamin because it could hinder the effects of the chemo. It's very strange for me.


I'm getting used to not having stamina. For a while, it was "but I just ran a 5K six weeks ago" but I've gotten over it and am looking forward to getting back to the gym and on the weight machines and running and biking and getting back into shape.

And with the weight I've lost, it'll be a little bit easier to have a crisp, built look ;)


If my hair is going to fall out, it should start happening in about another week to two. I'm not really worried about that. I think I'll be OK hairless. I am curious to see what it would grow back in like.


The weirdest thing sets me off crying, though. Ready for this true confession? Jordan Sparks. The girl who won American Idol a few weeks ago. (She was from this area — it was a big deal here.) I was watching American Idol for the first time ever the evening after my cancer diagnosis was confirmed. I watched her win and cried and was so sad that she got to learn that she was the new American Idol and I got to learn that I had cancer. I got over it ... or so I thought.

TJ and I were watching the news last night or the night before (it all kind of blends together) and they were showing her singing the national anthem at an NBA game and I cried. Funny how the association stuck. I'm hoping to be able to break that association, as the girl will pop up anywhere here, for a long time, I'm sure, and I'd rather not cry every time I see her...


Today I am feeling really good. I haven't done much to show for it, but that's OK. I did work for a long time on a nasty jigsaw puzzle that was given to me. I got the border done. We'll see how the rest goes...


I haven't had any visitors since Thursday, which kinda bums me out. I wonder if people are busy or if they don't want to get me sick. Not sure. But I've been feeling better the last couple of days and it would be nice to burn off some energy with some friends. So it goes.


It is interesting to note who I hear from and who I don't. Not that I'm keeping score or anything silly like that. It's just interesting. There have been a couple of mild surprises both ways.


I thought there was something else I was going to write about, but I can't recall what it was. Oh well. I'll come back and add it if I think of it.

quick update

more energy every day :)

pain in chest: doc said it was tumor breaking up and shifting (i think that's weird)

pain meds: make me dizzy; only good really for sleeping, but that's ok

breathing is good

white cell counts: very low; officially housebound until further notice

next blood draw is wednesday

next chemo is thursday

tired earlier than usual tonight; might go to bed now

less tired

Well, I woke up today feeling much better than the previous two days. I even went to school today ... for longer than I had planned.

Many of the kids were very excited to see me. I got many hugs and many questions. One student, who I have built up a rapport with, wouldn't come too close and wouldn't talk to me, but she listened to everyone's questions and my answers. She looked angry. I was sorry I couldn't do anything else for her.

I explained to them that I would not be here at the beginning of the year but I would be back and we'd start to play as soon as I got back. They seemed to be OK with that. We'll see how it plays out in real life.

Teachers were happy to see me. It was interesting to notice who noticed that I looked tired and who said I looked great (though maybe those who said I looked great expected me to look worse...?). I didn't talk to much of anyone for very long.

I took a good solid nap when I got home, and another one later. I definitely have more energy today than yesterday, and I ate much better today, too.

My mom and dad are coming out on Wednesday, the 13th, in the evening and staying through Sunday morning, the 17th. We'll see how that goes...

That's all the news from here, I think. All-in-all, it was a good day :)

I can't remember ever being so tired

I'm sure that when I had mono I was this tired. I must have been. But man, I sure don't remember it.

Last night, my head was so heavy...

Today, it has been tiring getting in and out of chairs, to say nothing of actually walking around.

I am hoping that this is largely due to two non-chemo factors:

1-I have not had a good night's sleep in weeks. I did feel a bit better after each of the naps I took today.

2-I have no appetite, so I'm eating when I'm hungry to stave off hunger. Perhaps if I eat a little more proactively, I'll be less tired.

We'll see how it goes. This stretch of time is going to be harder than I thought if I'm this exhausted all the time ... :(


"I am a resilient woman who is strong, which makes me feel empowered."
"I am a medical miracle."

I am really honkin' tired.


In other news, the second opinion came back the same as the first, so there are no surprises there.

That's all from here, I think...