rockakamille

This morning Zoom's mouse, Lightning Squeak, passed away. I hope the sadness isn't too hard on him.

We've been doing well, I've been doing well. I've had three expansions now in my left breast, I'm up to 210ccs there now. My left side is slightly bigger than my right at this point. I think my expander's limit is 300ccs, so I'm almost done. Once we're done filling me up, I must hang out for four months to let my skin and muscles get comfortable. Apparently they "remember" how they used to be and try to go back otherwise. So that puts my next surgery date sometime in the summer. Maybe June. I'm a little sore across the bottom of the expander, particularly if I try to use my abs. Gonna ask the Doc about that when I see him again in a week.

Halloween was a lot of fun, my sister came to visit and be part of the mayhem. We're really looking forward to a jumping day for Thanksgiving and seeing the cousins at Christmas. Zoom made up a great song..."Zero zero zero! Zero is a really great number!" He counts down the days, and zero more days is very exciting!

Last weekend I noticed some swelling on my left breast.  I went to the doctor on Monday morning, they said that if it swelled up more they would have to take me to the operating room and put another drain in.  They suggested I go buy a compression garment, and told me to wrap up tight all the time.  It worked!  I went and got a waist corset, and if I wear it upside down and backwards the space meant for my behind is perfect to cover up my chest.  When I went back to the doctor on Friday they said the swelling was down enough so they could start expanding me.

They have a little device with a magnet, so that they can find the port where they can stick the needle in.  They poke an IV needle in, and then slowly add saline 10ccs at a time until I say stop.  We put in about 80ccs.  I have no feeling there, so I almost didn't even feel the needle go in.  The best part, though, is that I can start to use my left arm again.  Still not to pick up heavy things, but I can start moving it around.  Hooray.
Maybe I have some hope of being able to dance this week at Triboriginal.

Zoom is going with me, I am teaching 4 workshops and performing..... if my body says it's ok.  I've been looking forward to Tribo for so long, I am sad that I might not be able to dance. But I'm excited that I get to go.

I still hurt a bit most of the time, but it's better.  I've even had a few vicodin free days.  Most of the time now when I do take one it's in the middle of the night, to help me sleep.

Zoom is starting to like his school.  He's a cutie.

Sig is off to England on business next week.  My Mama is coming to help me out while he's gone.  We'll be a hen house :).

I seem to have a knack for moving around more as I get better, so my pain level stays roughly constant.  Pretty funny.  The last two days I've managed not to take any vicodin during the day... so I was feeling about the same amount of pain.  I can use my left arm a bit now.

I noticed the other night, as I was trying to get comfortable on all my pillows to get to sleep, that my chest makes different noises now.  Like when you thump the barrel to see where the water level is.  If you start on my right side a couple inches below my collar bone, and gently tap or thump my chest across, it suddenly sounds very hollow on the left.  I didn't expect my body to become more musical :).

Zoom is having a good time with soccer. In yesterdays game he had broken away from the back, almost to the goal, about to score!..... when another 5 year old pushed him in the back and knocked him down.  Poor guy.  He recovered, and didn't go tackle the other kid back which I'm proud of.

Ow Ow ow!
Ok... this one hurts a lot.  It has surprised me.... of course I thought this was old hat.  With the lumpectomies, the mastectomy... I mostly just took the painkillers to sleep at night.  Not this time.  I've been on my vicodin every 6 hours... I hurt!  I'm actually at 7 hours since my last one right now.... I wonder how long I can go.

I feel a little better today, I went to the nurse, she pulled out the little painkiller pouch and re-wrapped me, looser and with me standing up straight.  My drain is working this time, which is fabulous.  But I'm going to have it for awhile, not so fab.

It's hard to be in this space again.  Not able to move the way I want, not able to do much more than sit.  Having to say again, "I will take care of that when this is over. " Dealing with the emotions this causes in my family, myself.

I am going to have surgery again next Friday.  This time with the "plastic" surgeon.... the beginning of my breast reconstruction process.

I don't want to have surgery again.  Pretty normal.  I mean, no one really wants surgery.... it's a necessary evil to get what you want- knees that work, cancer free bodies, pretty eyelids.....  But man, it's quite something to take a ride on that carousel again.  The nurse was telling me yesterday that after the surgery my chest is going to be wrapped up tight and I'm going to have a thingy (yes the tech name escapes me) that will administer pain killers directly to the wound that hangs around my neck.  I'm wondering why I get this little painkiller box with this one and not the lumpectomy or mastectomy.... hmmmm..... but I digress! Because my lungs are wrapped up tight, I must remember to breathe deeply so as not to develop pneumonia.  Did you know that this can happen to you?  It can.  The docs told me they don't wrap people for broken ribs anymore, it was so common for them to develop pneumonia!  So the nurse told me that every time I get up to use the bathroom, to be sure to take at least 5 full breaths, filling my lungs completely, and then walk around inside my house for 5 mins to make sure I don't get any blood clots in my legs.  Very smart thinking, but Aahhhhhhh!!!!!!!!! 

It's a different way to live, thinking to oneself, "I must do this now to survive".... rather than just bumbling along, eating and sleeping and drinking and washing and knowing none of these will become a life-threatening illness (ok mostly, but you don't think about it every time you eat a hot dog to be sure to chew it properly so you don't choke). 

My doc seems good, although he also seems overly cautious to make sure I don't have preconceived notions of having wonder bazoonkas after this.  

Zoom's first week of school had it's ups and downs.... overall he's doing fine, and has no problems saying goodbye in the morning!  He misses his friends at his old school.... I'm hoping he figures it out and develops some new friendships soon.  There was a new boy on the playground this morning, and they were having a good time together, so I'm hopeful about today!  Zoom is experiencing maintaining his body too- tomorrow morning we go to the dentist to get his first cavity filled.

I just wasted an hour in LJ ( I want to scream at the heavens.... Kahn! Ok obscure reference).  But the good news is I came back around the circle.... to the side where I remember that my life is only as I perceive it through my five senses and process it based on my experiences,  and I'm going to choose to enjoy it and do the things that will make me happy!

It is weird, now, thinking about cancer.
Because I didn't feel sick before this all happened.... only during treatment.  And now I feel fine and I can feel myself slipping back into my old life.  Except then I step back and wonder if I should. 
Life has been quite a maze lately, and I've hit the dead ends a lot.  But then I guess they are more noticable, because when things work out and nothing is in your way you sail along.

I would like to add to the list of things that are bad manners to ask a person.... such as, "Are you pregnant?", "How's your thesis?", and "Have you gained weight?"
One should also never ask, "What made you decide to cut your hair? Was it just time for a change?"

Unless of course you are emotionally ready and available for a possible discussion of cancer.  And the time and place you have chosen to ask this is appropriate.  I have had both experiences often now- people who didn't realize that one of the answers was cancer, and were sorry they asked, and people who thought it was cancer and this was how they asked if I did go through chemo.... but chose to do this in a busy checkout line or some other really inappropriate place. 

I've been on the Tamoxifen for two weeks now.... and I am reminded of being on the pill for the first time.  Wow the emotional rollercoaster of our body's hormones.... weeeeeeeeeee...... except sometimes it's not so fun.

I'm going to visit my very dear friend Jeni this week.... really looking forward to girl time with her, and Zoom seeing his 'cousins', and hanging out at the beach.

I'm still very sore most of the time.  My muscles are really complaining about getting used a lot again.  But I'm having a good time teaching dance and I'm working on a new choreography.

I feel like the past weeks since treatment ended have been a blur.  Ben was knighted, I had Tribal Fest, and my life is taking on the characteristics of a demanding 2 year old.  I'm trying to catch up and re-evaluating.  I still haven't finished sending out presents from last Christmas.  If I am behind on something for you, I'm sorry.  I'm trying to get there.

Last Thursday I went to see my oncologist, my one month follow up.  He gave me Tamoxifen, which I started taking last Friday.  My hot flashes had reduced significantly... I think I was only getting a couple a day.  But now I'm back to having them all the time.  And I mean ALL the time. Whew.

I've been so sore all over from using my body again.... and so tired.  I'm going to bed and getting up with Zoom most of the time, except a few nights I defy it and stay up for a bit to get some things done.  Can't do it for too long though... in fact I'm having trouble staying awake now..... good night!

For my scadian friends on LJ (and anyone who thinks this is interesting)

So... the mud and blood on Ben's lovely white on white tunic.

Do I try to get the stains out or glorify them?

I could chainstitch around them..... I could chainstitch animals on top of them.... I could do nothing, keep the tunic as a relic and not wear anymore (I like this option the least, I worked on that sucker for a month!  It's all hand stitched, no machine!)
Or I could use the best stain removers I can find......

What do you think?

Ben's Knighting ceremony last saturday was wonderful.  The ceremony was beautiful and moving, I got the tunic done, everything happened the way it was supposed to, no one screamed at each other..... fantastic. 

Ben and guards stayed up all night, joined by an emu from the farm!  It turns out emus make a noise that sounds like a soft drum.  I was asleep next door, and I had this fantastic image of them passing a drum around the circle... I think we should add that in to vigils!

We had to sacrifice our cars to have such a smooth event.... but it's ok.

I was amazingly exhausted and sore when we got home.  Put everything away yesterday and got exhausted and sore all over again.  Worked my first day back at Zoom's school today and feel exhausted and sore again!  Whew.

Lots to do!

I'm waiting and waiting to feel good.... I know it will happen.  One of these days, I'll wake up, and I'll feel better.  Today was a little better than yesterday. 

Right now though, the side effects are still with me.  Tired. Bloated. Thirsty. Grumpy...... some others too gross you really don't want to know.  I went out to see some dancing(Ariellah and Unmata were in town at Baxtalo Drom) last Friday.  I left my house at 9 and came back in the door at 12:30.  But I got hoarse talking loudly in the club, and pretty much lost my voice until yesterday.  Craziness. 

I had a good time at my last treatment.  My friend Ruth took me, and we both sat and hand stitched in the chemo rooms.  I was working on Ben's Knighting tunic, Ruth was making a hat.  Afterward she took me to a fabric store to buy me something to celebrate being finished- and they had mudcloth from Mali.  It's a cloth that is dyed using iron-rich mud which is painted on.  I got a piece- so beautiful.  I'm going to put together an african costume.  Fun!

Today I went and had a personal training session with Cera.  Wonderful.  My body feels so stiff and tight, it just felt like it had gotten oiled afterward.  Cera is doing a good job of picking exercises that are gentle strengtheners and openers. 

This Saturday Ben is Knighted.  Heh.  Sir Ben. :)  His tunic is almost done.  I'm very glad to be taking Saturday off... I need a break from work.  I'm looking forward to relaxing and healing.  Hopefully it won't rain too much on us.

This is the last one!  Woohooo!

My picc line is already gone.  When I went last week to get the dressing changed, I told my nurse I was over it and she said we could take it out :).  Ahhhh.  She literally just (gently) pulled this long blue rubber tube out of me... it didn't hurt.  It felt a little odd.  Strange to feel one's vein.  The vein was a little sore for a few days.  I had my treatment through an IV the next day, and that made a different vein sore too..... actually made me glad and reassured that it was a good idea to have the picc line all this time, since my vein was sore.  Poor veins!  They really are amazing.  I never thought about how they need to stretch as we move and bend, especially in places like elbows, knees, armpits, groin. 
The hole in my elbow is healing up nicely. :)

I'm having a hard hard time remembering that I'm still not 100%.... which is making me pretty tired.  I am so ready to just jump back in to my life!  Freedom!  But then I have to stop, rest..... recuperate from my head getting these ideas and sending my body off on them.  It's a weird tug of war.

Everyone wants to know "If the doctors say it's gone".  That's not really how breast cancer works.  They don't have a way to test me.  There's no tumor to scan, there wasn't any in my blood (thank god!).... when the docs have a device that can scan the body and find the cancer cells, that will be amazing!  For breast cancer, they remove the tumor, then they give chemo (and sometimes radiation) to kill any random cancer cells that may be in the body.  Then they see you every 6 months to monitor you, make sure there is no recurrence.  Since my tumor was estrogen positive, after a month they will put me on Tamoxifen, a drug that inhibits estrogen in my body.  I'll most likely be on that for 5 years.

So here's to being healthy!

Two more!
This was a tougher week for me.  I can feel the "bridge of health" getting narrower again..... it is a strange feeling, really.  The best I can describe it is like walking a bridge, and it's getting narrower and narrower.  I have this hollow feeling in my throat and chest almost all the time now.... and a couple other health problems from the treatments that are really annoying, not outwardly obvious, and a little gross.
Zoom had a cold this last week and fevers two of the days, so really I'm doing amazing that I didn't get his sickness.... but of course it doesn't feel that way.  I want to feel good. Not mostly ok.

I got an amazing slot to dance at Tribal Fest, and I'm working on a fantastic dance to do.  I really really hope my body can catch up to my heart and head and it goes well.  I want the picc line out!!!!  It's always a little painful the day before the dressing is changed, which would be tomorrow.  Ow.

I found out which part of the study I am in!  I am in group B- not getting a placebo, receiving Avastin with the chemo.  But I am not group C which gets the Avastin for 6 months after the chemo is over.  I am glad that I got some Avastin.  I think it is a good idea and will help my survival.  Too bad we have to wait to see how much it helps (5-10 years).

This Thursday is number three!  Two more!  I can't believe I'm saying this.... It really didn't seem as if it would ever end.

I've been trying to finish a big illustration project for Eileen Fisher this past week.  Hopefully I will be done today.  I think because I've had so much to do, I've noticed more when I've been too tired to do anything.  It's a bummer. 

I'm trying to take good care of myself.... including wandering in the murky world of food and environment and how they effect health.  I mean things outside the obvious.  For instance, is it much of a difference on one's health if one has 1/2 a cup of coffee every day vs. a full cup?  Does cooking with silicone or drinking things out of plastic make one more likely to develop cancer?  Some people say yes.....

But what I've noticed is, my thoughts now run "Oh don't do that it's not good for me..." at least several times a day.  I noticed this this very morning actually.  And now I'm wondering if having those thoughts so often is worse than the "health" foods and issues themselves.....

Is it better to not think about all of that at all, minimize stress, and eat foods that are "bad"?  Hmmmm.....

I'm thinking about a party in June maybe.... But Zoom's birthday is in June......

Last Thursday began the final countdown.... I have four more treatments to go!!!!!!!!!!!!!

I am so so so thirsty.  All the time.  It makes me think of vampires, this all-encompassing thirst!  I drink a quart of water even while I'm sleeping at night.  My mouth gets so dry it wakes me up.  Not to mention all the water during the day.  Because of all the water, my weight is fluctuating wildly.  So bizarre.  Probably just what I ought to be doing though.  My body must be trying to flush stuff out.  Can't blame it for trying.  Funny though that being so thirsty is a pain.  I'd like to sleep a little better, for one. 

I miss my nice soft skin.... now that all the hair is growing back it feels normal again.  The hair on my head is very soft.  Until I shave it off again!

Some happy news in my life- Ben will be awarded Knighthood in our SCA medieval club.  I'm very proud of him, and now we are planning his party.  It's going to happen right after I stop chemo.  I want an end-of-chemo party too.  And we won the kindergarten school lottery for Zoom!  He's going to a good public school next fall.  Fantastic that I don't need to stress about his school, it's all done and happy.

I'm feeling pretty all right these days, as long as I remember not to do too much.  Yesterday I did too much but lucky for me Ben was there to make dinner and bring in the groceries and let me rest.  I've started doing some gentle yoga to try to get my body back.  One of the muscles in my rib cage is protesting!  I feel like I have a bruise there.

It has been proven that mental attitude and feelings really affect one's health.  If one is feeling happy and alive the immune system mobilizes.  If one feels angry, sad, frustrated, it is important to allow oneself to feel these things but to let them "flow through" and move on.  It's more beneficial if I think of the chemo tomorrow as a wonderful healing liquid that I gladly take into my body to kill any cancer cells that might exist. 

But I know it's poison that makes me feel sick.

That's a neat trick, trying to think of it as wonderful!   I'm rather impressed with myself if I manage to do it even for a short time.

Seven more to go.... I don't want to go tomorrow.  Time to let the emotion flow through, get up, and do it.

My hair has started growing back.  All over my body.  It's strange, like someone flicked a switch and now suddenly it's just what my body does.  I'm not ready for it.  I liked not shaving... I like my bald hennaed head.  I think I'm going to stay bald for awhile.  Ironically that means shaving more.

Last weekend was our anniversary.  Ben and I have been together for 18 years!  We went out and saw some music.  The Yard Dogs and Les Claypool.  That was quite a show.  They gave us plastic wristbands so we could go in and out of the hall.  I get wristbands at least two days a week, one for cleaning my picc line and one for getting the chemo.  It was nice to have a wristband for something fun.
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I just woke up in a funk this morning.  Argh!  What is that about?
I've been feeling so frustrated about things..... trying to keep up with my responsibilities but not quite making it, wanting to make changes in my life but not being able to figure them out or manage to implement them, feeling better but still not myself....

My poor unused body.  I did a bit of dancing last week, and immediately the muscles in my hips started complaining.  Then last Wednesday, the day before Thursday Treatment Day, I was walking back to my car after the doctor.  (Have I mentioned I spend an average of 10 hours a week at the doctor these days?)  I had to park up a big hill.... and I think I actually felt well enough that I hiked that hill at my old normal pace.  The next day, I have shin-splints!  I wonder if each muscle is going to announce its return this way.....

So, a couple nice benefits to chemo-  I haven't needed to shave, and my skin is super super soft :)
My eyebrows got really really thin, but are tenacious... and are starting to grow back now! 

The picc line in my arm is feeling a lot better. 

My aunt sent me a book I'm liking a lot so far... It's called Anti Cancer.  I didn't think I would like it... but reading it so far has been rather uplifting.  It was talking about Stephen Jay Gould... he had intestinal cancer.  Since he was a researcher he went and looked at the statistics for survival, which for his type of cancer weren't good.  But he noticed that the deaths on the graph spiked, and then slowly reduced into a long tail, with some people living for a long long time after diagnosis.  He decided that he would aim for being in the long tail of survival.  He thought his chances were good since he was in good health other than the cancer.  And he did live for another 20 years, finally dying of something else.

I woke up feeling better today.  As C3PO would say, "Thank the Maker" !!!!!

I can live with all the days of feeling yucky if I just get one to feel good.  Then I have something to look forward to and it doesn't seem like it will go on forever.  It's amazing to me how different I feel today and how profound an effect that has on me mentally.

Tomorrow is the third taxol treatment.  Got the dressing changed on my picc line today, I can straighten my arm better now.  I hope hope hope it hurts less now. :)

I'm feeling a bit over- treated. 
There was all the hospital stuff, and the antibiotics and resulting yeast infection.

Wednesday they inserted the picc line.  This is a small tube that goes into my vein in my right elbow, then up inside the vein up my arm, across my chest almost to my heart.  The nurse measures how long she thinks the tube should be. Then uses an IV needle into the vein, puts in a "guide wire", then just feeds this tube into your vein and keeps feeding it until it's all gone.  Once it's in you go to get x-rayed to make sure it's in the right place.  Hopefully, the tube didn't go down another vein toward your toes or something!
That's the definition.  The insertion went really well, didn't hurt much or anything, the tube went to my heart like it was supposed to.  But living with this thing hasn't been fun.  If I really bend or straighten my arm it hurts.  My vein has been sore. Can't get it wet, have to try not to bang into it or get it caught on clothes. Ugh. 

Thursday I had my 2nd taxol treatment.  Pretty uneventful, the picc line at least is doing what it's supposed to do there.  I don't feel really sick per se on the taxol.... but I don't feel good either.  Most of the time I feel kind of like I've just driven for 12 hours straight in a car. 

At this point I just want to crawl into a cave until this is all over.   I'm tired.