"Tomorrow's coming round a hair pin curve in the road..."

"She's got a run in her stocking and she's missing the heel of her shoe."  ~ Poe

This past week has been up and down for me. Coming off my last treatment of A/C chemo, I was feeling better than I've felt since I started chemo. First week was good, second week was good, and I hoped third week would be good.  Last Friday started well when I got a call from my Rheumatologist around 4pm, telling me he had checked in with some high mucky muck of medicine at U of M medical school and they felt it would be ok for me to resume taking my Enbrel.  I've never been so excited to stick needles in me!  So, I dosed up that night, and was already feeling less swelling in my knees the next day.  Over the course of the week, I can definitely feel an improvement in the affected joints, but I'm still having pain in my left knee and hip, and my right ankle is a bit stiff.  I did cut down to taking one Celebrex during the day to help with walking and I'm still taking the prednisone, but I'll have to wean off that gradually to avoid any problems with my adrenal glands.  I'm hesitant to make too many changes before starting the next round of chemo on Monday.

Saturday we had some friends over and I felt good enough to hang out with them and cook dinner.  It was nice to feel normal. I ended the evening with a little tickle in the back of my throat but I was hoping it was a small allergic reaction to the wool yarn we were admiring that evening.  Sunday I laid low, I'm still having to recover a little more from high energy days.

Monday morning I woke up with full on sore throat that I developed sometime in the middle of the night.  Being the dutiful chemo patient I took my temperature and it came back 100.6.  DRAT! 100.5 is the magic number for calling the Oncologist no matter what day or time.  I really did not want to make the call. Of course they wanted me to come in and get a Strep test (negative) and do another CBC to check my white counts.  I was at 0.7 on Thursday, and when they finally got mine back they were at 0.3, which is not high enough to fight an infection on my own. So, I got to get two more blood draws for cultures and hooked up via my port to IV antibiotics.  4 hours after we went in, I was back at home with a 10 day script for Levoquin giant horse pill antibiotics.  More drama than I expected when I woke up that day.  It's strange that something that seemed so minor could end up causing me all sorts of problems because my immune system is so comprised.  The IV seemed to work out ok, because I woke up Tuesday feeling better, no fever, just the scratchy throat again. Wednesday I had to go for labs again and I was surprised that my white count was lower still 0.25, because I was feeling fine.  Now I'm wondering if taking the Enbrel on Friday could have impacted my counts.  I certainly don't want to bring that up and have them put the cabosh on my taking it.

Thursday I was designated driver for my hubs who went in to get the vein in his leg re-routed. It was an in-office procedure thankfully, but they dosed him on Valium, so he was not in shape for driving.  Having this done lets him get off the blood thinner Coumadin, which is a good thing, and hopefully will prevent further clots in that leg.  He spent 6 days in the hospital last February because he ended up with a small clot in his lung and a bigger one in his leg.  We'd both like to avoid a recurrance of that!  He's got some small incisions and a compression stocking on his leg, so we are both walking around a little funny this week.

Comparatively speaking, I'd consider the last cycle to be the best so far, even with the few bumps in the road this week.  At the beginning of Chemo, I was fully expecting to feel my worst at the end of it, so it's a nice surprise to come out of the first round feeling mostly normal.  I'm halfway through the worst of my chemo!  I'm starting my next 2 drugs on Monday - Taxotere and Herceptin, and I'm keeping my fingers crossed that these will be easier than the first two.

The week after Thanksgiving, I have an appointment with the boob doctor. and I think I will be starting to do fills in my tissue expander to get ready for reconstruction surgery sometime next year. I definitely have some thoughts in my brain about all that, but I haven't managed to sort it out enough to write about just yet. Right now there is so much uncertainty about Tomorrow and Tomorrow and Tomorrow, I am just trying to focus on today.  Today, I have laundry to do, and the nice thing is, that I'm actually feeling good enough to do it.

"Unravel me..."

"...a distant cord
on the outside is forgotten.
A constant need to get along
and the animal awakens.
And all I feel is black and white.


The road is long
and memory slides
to the whole of my undoing
put aside, I put away
I push it back to get through each day.


And all I feel is black and white
and I'm wound up small and tight
and I don't know who I am.


Everybody loves you when you're easy
Everybody hates when you're a bore
Everyone is waiting for your entrance
So don't disappoint them."
~Sarah McLachlan

I have been feeling pretty good since my last round of chemo almost 2 weeks ago.  I'm counting my blessings, even though it's so strange to me how differently my body has reacted to the same drugs over the course of the 4 treatments. The repercussions of feeling better are that I'm spending less time thinking and more time doing; which means I'm not writing as much.

Slip stitch beanie in denim blue.

I have, however, been spending some time knitting.  I finally got 2 hats worked out right. One in cotton and one in denim blue baby soft acrylic.  The acrylic one is too warm for inside wear, but has been working out ok for outside, now that the weather is starting to begin to creep towards winter (SNOW outside my window today!).

Going out in public has been a bit problematic for me because the hot flashes have hit.  The word around these circles is "chemo-pause"...chemically induced menopause.  The chemo finally stopped my cycle and I have the lovely side effects that go with it: hot flashes and night sweats.  (I'd like to say mood swings haven't been as much of an issue, but you'd have to consult my hubs for veracity of that statement!).

If I have a hot flash around my house or friends, I just peel off the hat first, and then start with the other layers. But in public, I feel a little bit uncomfortable with exposing my Benjamin Button-head to the general public.  One trick I figured out at my son's indoor soccer game last week was the 2-in-1. I wore my cotton hat and put my acrylic one over it.  When I got too warm, I just peeled off the acrylic one. And I dress in layers, preferably with zipper or button fronts. I will go from freezing to sweating and back to freezing several times over the course of an hour or two. Or...even more pleasantly, walk around with ice blocks for toes, but sweating armpits.  It's really a PITA.  It's also a constant reminder of what is potentially waiting for me once I begin on the 5 years of Tamoxifen starting next November. I'm trying really hard to put it aside, not worry about what may or may not happen to me on that drug, but now that I know a little about it, I can't help but ponder every now and then. I'm back in unknown waters, which is a place that really drives me crazy: I'm getting ready to start 2nd round of chemo: Taxitere and Herceptin, and I have no idea how I'll react to them.

My 1st treatment is the Monday before Thanksgiving. I've heard that the Taxane class of drugs (most common: Taxol and Taxitere) are less harsh than the Adriamycin/Cytoxan cocktail I've been going through.  This is a big relief to me, but the fact is that it's still a cell destroying drug, so the usual chemo side effects may apply.  I'm also waiting to see if this round will maybe help with my RA symptoms, which, though improved by my current meds, is still present and annoying. From the Herceptin, I have NO idea what to expect.

projects

So it's this waiting and wondering that gets inside my brain and makes me fret. I HATE not knowing. When I am feeling good, it's easy to make plans for the future, but I still must put a dependency clause on any that I make: "plans subject to change depending on side effects". At the same time, I've had lots of opportunities to practice how to deal with the uncertainty that this diagnosis has given me. I must consciously tell myself again and again to put it aside- Give it over to God and the universe to deal with.  It's out of my hands.  It will be what it will be. Every day of dealing with this THING, I get to practice modifying my response to the unknown. That's a LOT of practice! In the meanwhile, I will try to do something productive and meditative, for me, it's knitting, and  I haven't run out of yarn or projects just yet.

What to say to someone diagnosed with Cancer...

Because I just ran into another woman yesterday and one the week before who is going through this or has gone through this giant pool of suck.  I swear, I sometimes feel like it IS catching!  Crazy Sexy Life said it perfectly here...http://networkedblogs.com/pH9aG?a=share&ref=nf

Thursday

Today, my house almost burned down.

Well, it could have, but it didn't.  Actually,  my dryer lint filter got so plugged up with lint from an old chenille blanket, it shorted out the motor and charred the inside of the dryer.  My hubs smelled the smoke while he was outside hot-tubbing with our son.  My nasal membranes were fried from the fumes of the drying garlic in the oven, so I was blissfully unaware of the shananigans going on in the laundry room.

charbroiled laundry!

Sometimes, the universe bumps us a little bit just to remind us to slow down, pay attention, and oh yah...clean out your dryer ducts every once in awhile!

Thanks, universe!  (can you swing me a good rate on a new dryer, though?)

classing up the neighborhood!

Wednesday...

Today is an uneventful day. That, for the Wednesday after a Chemo treatment is cause enough to celebrate.  I feel good this week.  Maybe the fortune cookie gods were right, my luck IS changing?  I had 2 good weeks prior to the 4th session of A/C and a couple of good days after. I'm counting my blessings.  Today, I went to the grocery store to buy winter clothing supplies for my son, even though it is almost 60 degrees outside and sunny!  It felt nice to drive with the window down, and the radio up! I feel blissfully almost normal today.

So...a short little post in celebration of a good day.

I get knocked down, but I get up again...

Sundays have always been hard for me, since I was a kid.  I remember when "60 minutes" came on at 7pm Sunday night. The ticking stopwatch an ominous reminder that my free time was coming to a close, and that pit of anxiety in my stomach--the unfinished homework, the start of another week of school.  That feeling returned when I started working a 'real job', the Monday through Friday, 8 to 5, kind.  I can never really enjoy Sunday afternoons and evenings because of the knowledge that another long work week lies before me.  Now, ironically, when I have no work week to dread, I still have Monday as my Chemotherapy day.

Tomorrow is my last treatment with the Adriamycin/Cytoxan regime. I am almost done with my first stage of treatment. I am excited, of course, to be finishing up getting dosed with these horribly strong poisons.  At times, I just find it ridiculous that the "cure" for this disease seems to be worse than the disease itself.  Especially since I was told my tumor was completely removed during my mastectomy.  I wonder what quality of life I am giving up to gain more quantity, and if it is worth it.

Last week, against my better judgement, I checked out a book from the library called "I Am Not My Breast Cancer".  I was looking for the book about emotional healing I found on Lena's blog My Personal Lens. Unfortunately, it wasn't even on the inter-library network, so if I want to read it, I will need to buy it. I haven't read any books about breast cancer since I was diagnosed, except for the Susan G. Komen breast cancer manual my surgeon gave to me on the day I was diagnosed, and the pamphlets on chemo side effects.  This is in direct contrast to my normal behavior, in that, when I get interested in something, I must find out everything I can about it; internet, books, whatever.  I guess the key word here is 'interested'.  I find that I really DON'T want to read about all the horrible things that might happen to me during this whole experience. Even listening to survivors telling me about what happened to them during their treatments with the drugs that I'm using or going to have to use doesn't appeal to me.  Am I in denial? I don't think so. I just don't want to front load my already anxious brain with things that may or may not happen to me.  If they do, I know I will deal with them, but I don't want to THINK about it before I have to.

The book "I Am Not My Breast Cancer" is a compilation of hundreds of women's thoughts about their experiences with breast cancer.  I read it in three days, and I cried for three days.  The stories in it are both positive and negative, happy and sad, joyful and painful.  I could relate to some of the experiences relayed, and was appalled by what other women had to endure. I cried for both myself and for them.  Additionally, the fact that I'm so grateful to be finishing up one cycle of hell is tempered by the reality that I have 3 more to endure.  I have up to this point been happily oblivious to what comes after January.  Now I know, and it fills me with dread.  Most everything I read about the effects of tamoxifen, an estrogen suppressant that I will need to take for 5 years because of my estrogen positive tumor, is horrifying to me.   I realize that most of my friends and family are looking at the end of my chemotherapy treatments in January, as the end of my cancer treatment and then my life will go back to normal.  And externally, it will begin to look like it.  My hair will grow back, my boob will be rebuilt, but the truth is, it will not be over, not until I'm 45.  Five years of my life just to try to get to 10 years without recurrence, and no guarantees it will.

So, I think that I will go back to focusing on one thing at a time, and try to forget what I know about the future. My fortune cookie today said: "Today your luck will change".  I will try to believe that it will change for the better.

Self Portrait BBC (before breast cancer)

You might as well be walking on the sun

Isn't it funny how when we have the choice to do something good for ourselves we so often choose not to do it?

Yoga is one of those things that I know is good for me, makes me feel good, yet so often in the past I opted for 10 more minutes of unrestful snoozing over hauling my butt out of bed to get on the mat.  It's not a choice for me now--If I want to be able to move, I must MOVE.

I have to make modifications, again, to accommodate my new limitations. It's not a matter of just getting back to the mat, anymore.  For example, I can no longer just sit on my mat and do seated forward bend.  I can't straighten my legs completely because of the swelling in my knees, yet stretching these muscles is crucial to keep them from cramping and shortening up, making walking even more difficult. So I must get creative with props, now. I have been using my breast cancer quilt as a bolster to elevate my hips in order for me to do this stretch without hurting my knees.

I used to think that I didn't need to use props during yoga--that was for beginners, or people not as flexible as me. Pure egotism on my part. Props are there to help the body do what it cannot. I have found that pride gets in the way of asking for help--even if it is just from a yoga block, strap or blanket. Why do we continually choose to suffer when we know there are tools out there to help us?

Suffering--and the lack thereof--has been on my mind a lot these days, for obvious reasons. How do I stop my suffering? This goes beyond just the immediate pain and discomfort of my RA, my chemo, my recovery; it spreads out to how I respond to the challenges that are my everyday life.

Buddhists consider pain and pleasure to be two sides of the same coin--they both cause suffering. Pleasure causes suffering because it doesn't last, when it is gone we lament, we regret, we try to do what we can to bring it back permanently, which is impossible. Change is the only constant.

To counteract this suffering, Buddhists practice detachment. I used to think detachment meant not caring about anything. The thought of giving up pleasure in order to give up pain just was not going to work for me. I thought I could try to just give up the bad and keep the good. Again, pure egotism.

My favorite book on Buddhist
 meditation, written by a westerner.

As I read more about Buddhism, from the Dalai Lama and Lama Christy McNally, I am starting to understand what true detachment means. It doesn't mean non-emotion, or giving away all your possessions; it means the realization that you cannot hold on to anything in this life, because to be alive is to be changing every single moment. Detachment is the mental state when we give up the illusion that we can somehow do something or say something that will stop the changing.

I'm struggling to internalize this concept. My logical brain understands and agrees: our outlook affects our outcome. But it's such a foreign idea to my American heart to realize that I cannot be or do whatever I want. Isn't that the American Dream? But it is based purely on the physical, material side of things.  If I have this, then I will be happy.  If I take that, then I can eliminate pain. If I have a bigger house, better clothes, a cleaning lady, etc. I will be happier.  In the end, we die alone with nothing but the memory of the life we lived. This is not supposed to be morbid; it is the truth.  You can't take it with you. We cannot cheat death no matter how hard we try--but we must not cheat life, either. None of us knows how long we have to live, and how that life will turn out. We must appreciate that the moments we have are meant to teach us something, and those teachings will impact the quality of our lives and the lives of those around us that we touch.

So, I am struggling with change even as I am dealing with it. I know that this moment of my life will soon be over, but I will have a new challenge to face. I will need to make the necessary adjustments to bring myself back into alignment, physically and spiritually. For now, though, I need to use a bolster during my practice so that I can breathe in, stretch forward...and breathe out.

~Santosha