rockakamille

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. 

I think I mentioned something about this, but while at the hospital I realized that it's best if as many people know as possible..... so please pay attention!

I should not have any sort of needles (except acupuncture), blood draws, IVs, or blood pressure cuffs on my left arm.  Because they removed lymph nodes, that arm is now at risk of developing lymphadema.  This means the lymph system in the arm stops working properly and the arm starts to swell.  It's ugly, uncomfortable, and there is no cure.  All that can be done is the arm and fingers can be wrapped up.... every day.  Yuck! 

So in the unlikely event that I am unconscious, you are with me, and I'm receiving medical attention, please help me out and let them know!  I really want to avoid lymphadema.  I think you can understand.  If you forget which side it is, I have a scar in the left armpit (and left breast of course)

This goes for anyone who has had lymph nodes removed, btw.  Including legs.... I realized I should let everyone I know know about it- since one morning for my blood draw I was a little sleepy and the girl headed for my left arm with the needle!  I woke up quickly and told her no, and then she noticed the sign above my head that says "No needles/BD/blood pressure on LEFT arm!"  

So now my poor right arm gets it all! 
I'm up in the wee hours because my antibiotics give me headaches and make me feel lousy if I don't take them *exactly* 6 hours apart, and with one of them I have to sit upright for 30 mins afterward to avoid heartburn.  Fun fun fun!  Had the second Taxol treatment today, will let you all know how this one goes in a couple days.

First of all, check out my cool hennaed head!  Teri and Stefanie are totally awesome, I had a really fun fabulous day.  My hands and feet are all hennaed too, and I got a head and hand message!!!!!!!    *ahhh*

The "T" or Taxol treatment didn't go so well.....
For one my vein kept spasm-ing, which hurts.... so I've decided it's finally time to get a picc line. I have to get blood tests taken and chemo through an IV every week for the next 11 weeks= at least 22 more pokes into the veins of my right arm. The advantage to getting one is they put a tube down your vein that stays there, so you don't have to get a new IV or needle stick to draw blood and your vein is protected a bit from the chemo drugs. I don't know too much about them, so when I get one on Wednesday I'll fill you in on them then.

For two my cold was still hanging around, and I just have very little energy.  Enough so that sitting around feels fine and I can talk up a storm, but I try to do anything and I need a rest.

For three on Wednesday I got a fever of 103, and they admitted me into the hospital!  It was exciting.  First my left breast/masectomy scar area started feeling sore, filled up with some more fluid, and then I start to feel feverish, sore, and weak all over.  By the time I get to the doctor's at 2pm my friend Sion insists we put me into this wheelchair to take me in and I don't argue with her (you can tell I felt yucky!).  When I get to the oncologists they say I'm at 103 and they are admitting me.  They call an ambulance to drive me 1 block to the hospital building and put me in the ER.  There they test my lungs, urinary tract, ears, throat, etc. looking for where the infection is..... nothing seems infected so they start me on two general systemic antibiotics.
By the next morning my fever is down and I'm feeling better.  So yes, I have an infection, but we still can't figure out where it is.  The good news is I'm not Nutropenic (which means you don't have enough white blood cells in your body, and is really common in chemo patients) I talk to at least a dozen doctors, and they decide to drain some fluid from my breast (didn't we do that enough last November? Guess not) to test in case that's where the infection is.  I don't know why but they send me to radiology to drain it.  The radiologist was really the only doctor I have encountered in this adventure who sucked.  Sucked, I say! 
But the docs don't want to let me go home 'cause they still don't know what is going on, and one of the antibiotics they have me on has to be administered through IV.

Thursday I'm feeling pretty good, Friday I actually feel better than I have in about three weeks.  My cold is finally gone, the effects of the fever are gone. So I get to sit around, have my meals brought to me, no responsibilities, and watch movies.  Not so bad, really!  The food is even rather yummy.  At Kaiser they send someone around every morning, and you get to choose from a small menu what you want to eat. I started to feel rather like I was in a hotel.  

The only bad part in the hospital really is the morning.  At 5am someone comes to check your vitals. Then at 6am someone comes to draw blood for testing.  Then the first round of doctors usually shows up around 7am.  On Friday at 7am, at least 7 people came in and surrounded my bed. They were the "surgery team", which means the surgery residents.  I don't recommend being woken up, lights in your eyes, surrounded by doctors, and interrogated about something as important as your health.  

We still don't know exactly what happened.  The fluid they drained didn't grow any bacteria.... some of the docs think I didn't have an infection but that one of my lymph nodes in my left arm stopped draining where it was supposed to.  Others think I did and I'm still on antibiotics now just in case they are right.  I think it was an infection.

So now I'm home, on antibiotics.... with a pretty head! 

Last night was my very very last nupogen shot!  Wooooooohooooooooo!  I don't have to stick my poor tummy any more.

I wanted to thank you all for taking the time to read about me, and for your support.  I really appreciate it and it has made so many things easier.

So AC is over.  I feel like I'm walking along a bridge of health that is getting narrower and narrower. It's become a balance beam, and I'm getting closer and closer to falling off.  Thank god the AC is over. I feel pretty weak and I don't want to fall.

Jenni came down and took care of me this time, and when she had to go home Ben and Sion stepped in. This last round I had less nausea, but more fatigue.  I spent last week mostly on the couch or in bed.  This week I've caught Zoom's cold.  Hooray for Chinese medicine mouth and throat pills!  Actually, I'm going to show them to my oncologist because they have kept my mouth/throat much happier this whole time.

The last 8 weeks, or 56 days, Ive felt various degrees of yucky for about 40 or so of that. It's crazy to think of.  My doctor says that with the "T" chemo treatments over the next 12 weeks, that the "T" (or pacilitaxel) is "better tolerated" (isn't that a funny yet eerily accurate description?) by patients.  So he says I should get some of my energy back and my hair might start growing back too. :)  Weird that my eyebrows are still on my face.  I know a lot of women loose those, but mine apparently don't want to go!

Food is different.  My mouth isn't sore, per say, but extremely sensitive to salt, spice, sour.... carbonated drinks and wine just hurt.  Not that I want to drink much of them anyway. 

Friday is the first of the new "T" treatments.  We'll see what happens :) Teri is going to come henna my head in the beginning of Feb.  I can't wait!  

One more day (after today) of feeling good and I am enjoying it!  Friday is my fourth and last AC treatment.

Last Sunday- Monday was pretty rough for me.  I just still felt weak and tired and slightly nauseous and I was just done.  Done!  And I was thinking I really needed to rally somehow, the next treatment was coming, but how was I going to????
And I hate hate hate those nupogen shots, I have little red spots all over my tummy where I've had to poke myself.  This go round once I hit a vein and I have a little bruise in that spot.  Sometimes they really really still hurt. Ahhh!  But I know I have to do them, they keep me from getting really really sick.

Then thankfully I woke up Tuesday morning feeling better.  Feeling more like my old self.  I even put in Rachel Brice's video and did a short easy session of yoga and dance.  It felt soooo good to move and stretch a little.  I'm going to do it again tomorrow.  These three days of feeling good between the treatments almost feel like I'm on vacation.  I just have to remember to be patient for them with this next session when I hit the dark days.

It's tough for me to remember that my body isn't at it's normal strength, that I can't do things I normally don't think twice about.  And then it's tough for me that I feel weak.  Like yesterday I'm at the playground with Zoom (it's sunny and beautiful and wonderful) and we are kicking a ball around.  The ball speeds past me to my right, and I kick my leg out to stop it- and feel something pull and say "ow!" in my hip.  I didn't actually hurt myself, but it was definitely a huge -Warning! Danger!- from my body.  Frustrating because it's a movement I have done a thousand times without thinking about it.  And now it's too much for my body.  *sigh*

We drove to my folks in the snow in Vancouver, Washington.  They had the biggest snowfall in a loooong time, and we had a blast.  Zoom was very happy to play with his cousins Zoe and Josiah (and my siblings and cousins and aunts and uncles and great grandmas and granny and grandad). We built snow forts and had great snow fights- snow fights with 4-6 year olds are really fun.  We also went sledding and.... skiing!  Just for one day, really just for one afternoon.  I took it very easy and went down the nice easy trails with Zoom inbetween my legs, teaching him.  He did just as good this year as he did last year.  He enjoyed it, played Star Wars all the way down the slope, and this year started to learn to snow plow.  When I told my doctor last Friday I had done this, she said, "remarkable".  But she also cautioned me to be careful should I decide to do it again :).  

My mom came home with us to take care of us this week.  Treatment was yesterday, my white blood cell counts are still through the roof thanks to the hated nupogen shots :).  The nurse said it would be easier if I didn't have such thick skin, but I thought it was ok. I guess she has to work a little harder. Today I'm in bed, on the computer again.  Last time I had a lot more nausea the mornings of day 3 and 4, so I'm going to have to watch and see if there's anything I can do with the meds this time to avoid that.

I've posted some pics of my mohawk when it's down in a blue bob and us in the snow.  Right around Christmas my hair started falling out.  I expected to feel different somehow when that started happening.  But nothing, just started to notice that if I ran my fingers or a brush through my hair that waaaay more hair was coming off than normal.  Sadly it didn't fall out evenly and started to look weird, so after about 5 days we shaved it all off.  I decided throwing it all away was too depressing, so I left it outside for the birds to make cozy soft blue nests with :).  What's weird is after we shaved it off, then it suddenly became sensitive and I didn't like people or my pillow touching my head!  I started wearing my soft purple knit cap all the time to protect it.  Ben's calling me "smoothie".  My scalp is starting to hurt less, so I think next weekend when I'm feeling good again we'll shave me smooth with a razor and henna my head. That'll be fun :)  And then I'll take pictures too.

Happy New Year!