Let's talk about Boobs, baby, let's talk about you and me....

I've been thinking a lot about them lately.  Mostly because I'm approaching the end of my chemo, which means that I have started thinking about reconstruction surgery.  I've been having very conflicting emotions and feelings about the surgery.  My plastic surgeon says this should be the fun part, to look forward to after all the crappy stuff is over.  And I AM looking forward  to having this tissue expander out of me, even though it only bothers me occasionally.  I had one fill already, and despite my doctor and husband's recommendation, I really don't think I want to go any bigger.  So this means that I will have one more fill and then I can do my reconstruction.

It's funny how much different this process feels on the other side of  my mastectomy.  Prior to, I was constantly annoyed by my boobs; they were saggy, droopy and stretch-marked.  They were the one thing I couldn't do to improve by exercise or determination alone.  If I wanted nicer boobs, I would need surgery.  I waffled on this point quite frequently.  On the one hand, it would be nice not to have to put a bra on in the morning before I went down to meet my houseguests or neighbors. On the other hand, I was approaching 40, married, and really didn't have any reason to need to have perky naked boobs.  Plastic surgery at this point in my life seems a little pointless.

Still, it was one of those things that vexed me when I looked at myself in the mirror.  When I found out that I had breast cancer, and further, that I would need a mastectomy, I thought...I finally have a good reason to get a boob job!  Yey! Perkier boobs!  What I didn't realize until afterwards is that reconstruction is not the same as renovation or augmentation.  When I am done with all this, I will have what looks like a boob, but is definitely NOT a boob.

As I am nearing the end of my chemo, and life is treating me a little more gently, I've been lucky enough to feel better and be more active.  I'll be bee-bopping through my day (well, I'm not QUITE up to bee-bopping, but considering the previous state it sure feels like I am).  Anyway, I'll be going about my day, and I'll see something pink, or related to breast cancer and it hits me like an electric shock...I had cancer. I had CANCER!  They cut off a piece of me.  I will never have a left breast that feels like a real breast.  In fact I really have NO idea what it will look and feel like when I'm done.  Right now, I can flex my boob!  Since the tissue expander is under my pectoral muscle, if I'm doing something athletic, I can get my boob to flex.  It looks totally bizarre.  I wonder to myself, will it do this after my surgery, too?  I have to think it will.  I have to admit, it kind of gives me the willies, but there is nothing I can really do about it.

After all that, they will perk up my righty.  I'm so glad I decided to keep it, it reminds me of what a breast should feel like.  But after my surgery, this one will be scarred, too.  It makes me nervous now to take the risk of losing the boobiness of my remaining boob.  In the process of getting my perkier boobs, I might lose some more sensation, and deal with more scars.  Ultimately I'll have something entirely new to call my own. I realize I can't just get one done and not the other...well, I CAN, but it seems a bit stupid to come all this way and not get a matched set.

Still, there is a part of me that loves my old saggy untampered-with right boob.  I wish I had realized how perfect they both were before I lost them.

new hair for me

I resisted the urge to make this hat for me until all other christmas knitting and tasks had been completed. I've been dying to make it for about 2 weeks, ever since I found the pattern.  It turned out awesome, though I'm still ambivalent about how long the tassels are. But, I wore it out today for lunch with a friend, and then to my mom's and they both loved it.  Then I talked my mom into taking me to the local yarn show where I bought two skeins of malabrigo ultra soft merino wool to make a striped version of this, which I saw on ravelry and instantly loved.  I love this pattern because it makes me look and feel like I actually have hair again.  You can't tell in this picture but this yarn in Lion Brand homespun has all colors in it, brown, pink, blue, green, tan, etc. It goes with everything!  The only problem I am finding is that it is shedding a bit less than my dog.  I'm hoping that lessens up a bit, but if not, I may need to braid the tassels instead to keep them inline.  we'll see how it goes.

This led me to the blog of the woman in the Czech Rep. who created the pattern and she has awesome stuff there, too.  I'm jealous, I wish I could knit that prolifically.  She, of course has a totally awesome hat posted there today that I cannot for the life of me figure out how she knit it. Here is the link for her blog if you are interested in this hat or in any of the other stuff she's made.  it's way cool.   http://navlne.blogspot.com/

Now, unfortunately, I must put the malabrigo aside momentarily while I work on a post Christmas project for a friend that I must get out of the way before I do anything else.  ~sigh~

~shanti~

The True Meaning of Life

“We are but visitors on this planet. We are here for ninty or one hundred years at the very most. During that period, we must try to do something good, something useful with our lives. If you contribute to other people's happiness, you will find the true goal, the true meaning of life.” 


―HH Dalai Lama XIV

Santosha

"Listen! the teacher of the teacher, the creativity of the universe,
In the midst of his uncontrived audience,
According to this inner source of all contrived quintessential teachings,
Describes how everything appears,
When you have understood the united frame of reference of this core teaching,
All other frames of reference will be reflected within this creativity that makes everything else possible.
Thus, if you know me -- the intelligence of the universe --
You will know the inconceivable truth.
If you know me -- the majestic creativity within everything --
You will know and be at peace with the reality of everything else."

Longchenpa "You are the Eyes of the World", translated by Kennard Lipman and Merrill Petersen, Snow Lion, 2000

A few years ago, after a very crazy few weeks at work, and a particularly stressful Tuesday, I was pulling out my hair and hating my life.  I went to yoga class that night and as I lay on the mat, the teacher started talking about something she had read, a yogic concept of Santosha. 


 I had never heard the word before, but as she explained what Santosha meant, I realized that was EXACTLY the thing I needed at that very moment in my life.  From that day on, Santosha became my mantra, my way of dealing with the uncontrollable craziness all around me.  I have it written on my white board at my work cubicle and occasionally, people will stop by and ask me what it means, and I will do my best to explain it to them.  Then, when we meet again in a crazy moment, we can smile at each other and say, "Santosha", and be at peace.


I googled a few definitions of Santosha, because I've been feeling very much anti-santosha lately, with the holiday season approaching, the uncertainty of what my next few months will bring, and I realized that I was losing my grasp on the concept.  Here are some examples of what people think Santosha means.



Santosha is a Sanskrit word meaning- living in a state of contentment

Santosha is the ability to flow in life and not struggle, contentment; 

Contentment is variously described, but can be thought of as not coveting more than you have and is therefore very different to the way some modern western societies encourage the population to acquire more 'stuff' to achieve contentment. 


Santosha: means contentment. It is very easy to say, 'I am happy as I am', but are we really happy as we are? If we are happy why are we fighting with ourselves, with our egos? Why are we struggling to find further happiness in life?


Santosha: Being content with what is, accept what is; make the best out of everything. The practice of gratitude and joyfulness; remaining calm with success or failure. A state of mind that is not dependent on any outer feedback or event.




I don't know that I can add too much more to what is here.  I know what Santosha means, and like Yoga, it is a daily practice to make sure that we can appreciate the concept and incorporate it into our daily lives.  


I know that I've been letting the 'dark side' of things take hold of me a little more lately, but as in the Chinese Yin and Yang, there is room for dark things within the concept of Santosha, as with light, both are present, and we need to bring those things into ourselves, examine them, and then let them go, ready for the next moment to present itself.


So for now, I wish you peace ~om shanti~ and santosha

Fear

"...but I fear
I have nothing to give
I have so much to lose
here in this lonely place..." Sarah Mclachlan

I think the hardest thing about this whole experience is the fear. 

There is fear of the known - I have an aggressive type of cancer that could recur and kill me. I have to go in every three weeks and have them poison me in order to try and make that first fear not happen. 

Worse I think is fear of the unknown: I have a friend a little younger than me who experienced cancer back in college.  Now she is facing open heart surgery because her radiation treatment ruined her heart valve. I just had my 2nd MUGA scan to make sure that my heart is still handling the drugs they are giving me, but congestive heart failure is a possibility as a result of my treatments.

I made the mistake of reading the MSN list of people who died in 2011.  I didn't count, but it seemed to me like a whole bunch of them died from some cancer or another.

A Cancer diagnosis throws death right in your face.  Even though my diagnosis was "good" (is that an oxymoron?) I still had to wrestle with the fact that I have a disease that could kill me in a thousand different ways.  I know that most of these fears are not realistic, I have a reasonably good long term prognosis. But, in the middle of the night, when you are the only one awake, these fears take hold of you.

I'm afraid I won't see my son graduate from college, or get married and have children.

I'm afraid that my hair will grow back all wispy and grey and I will look like an old lady at 40.

I'm afraid that my marriage will not survive the stress of this experience.

I'm afraid I'll never feel sexy in a low cut blouse again - to me, there is nothing remotely attractive about the robo-boob artifice of muscle and silicone and ink.  I know the boob is gone forever.

I fear that when the time comes for me to go back to my 'normal' life...i.e. the one I was living before I got my diagnosis, that it won't be able to live up to my expectations of what my new life post-cancer should be.

I'm afraid my nails will turn black and fall off during this treatment, and that I will lose feeling in my fingers and toes and never get them back.

In the end, I know that I will live through these fears, some will come to pass, some will not, and I will figure out how to incorporate the new reality of my life and move on.  But, still....there are those moments in the middle of the night....

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror.  I can take the next thing that comes along'. You must do the thing you think you cannot do." -Eleanor Roosevelt.

Grey Street

"...And she thinks...hey
How did I come to this?
I dreamed myself a thousand times around the world
But I can't get out of this place.
There's an emptiness inside her
And she'd do anything to fill it in
But all the colors mix together
To grey, 
and it breaks her heart....


She feels like kicking out all the windows
And setting fire to this life
She could change everything about her
Using colors bold and bright
But all the colors mix together
To grey.


And it breaks her heart."


~Dave Matthews Band "Grey Street"

Complete Estrogen withdrawal is like PMS times 1000. Or the worst post-partum depression you could imagine. Or both, mixed together with super anxiety bits and a bit of chemical warfare to top it all off.  I feel like I'm losing my mind.

I've reached a point where I just want to be done with THIS.  I don't think I can knit any more hats.  I'm tired of trying to make the long hours of every day bearable, tired of driving myself crazy with the "what happens when I'm done?" refrain that goes around and around in my head.  I'm closer to the end of the cell killing chemo than the beginning, but what I've realized is that it doesn't end there. There is more and more and more and each new thing brings a host of worries and fears and change.

I'm getting through it...just barely.   I checked out the local psychiatric hospital this week (it MORE than fulfilled it's duty of looking EXACTLY like a psychiatric hospital I would never want to stay at).  One week of group therapy is not going to help me.  A padded room and a month's worth of sedation sounds nice right now, though, but I haven't found any place around here offering that! 

I had my robo-boob expanded with 60cc's of saline on Monday.  The result is now I REALLY look like I'm in the process of a breast reconstruction.  I'm still unsure what I want this thing to look like in the end.  I've had my 10 day labs done, seen my therapist, forced myself to the gym for a verrrrry slow walk on the treadmill, and adjusted my anti-depressant and anti-anxiety meds with my PA. After a mini reality check I realized that if I can't get it together myself, no one can. I know I need help sometimes. I know I need to get out more, brood less. Exercise more, worry less.  Plan some healthy meals, visit new babies, and keep up with my friends.  

This weekend I have a soccer game to watch, and my husband's family annual cookie party to attend.  

Monday, I have another "Muggle scan"...my MUGA scan that is.  I had my first before I started on the Adriamycin/Cytoxan round, and need another one now that I've started the Taxotere/Herceptin round.  The Adriamycin and the Herceptin can both damage the heart valves, so I have to get these periodically to make sure mine is not being damaged.  I'm still not totally clear on if they do find damage, if there is anything they can do to reverse it.  Another unknown for my big bag of things that SUCK and must therefore worry about at some point.

The following Monday, I have my 2nd treatment with Taxotere/Herceptin.  The side effects of this have been physically very mild.  The rash on my face came back and I'm missing a few more eyebrows, but it's nowhere near as powerful and uncomfortable physically as the first round of meds were.  I think that is probably part of the problem...feeling better than death leads to thinking about the future, but right now, every time I do that, I nearly hyperventilate....it's too too soon. I'm not ready to step back into my real life just yet.  I'm still trying to figure out what my real life is supposed to be.  I have the paper and the paints and the brushes, but I'm still too afraid to look at the picture that will be there when I turn the page.

"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

Isn't that Special?

I saw my rheumatologist yesterday.  I asked him...."So....is it pretty common to see patients have RA symptoms flare during chemotherapy?"  Answer: "Uhh.....no....".  According to both my oncologist and my rheumatologist, RA symptoms typically go into remission during chemotherapy. In fact, there are many cross-over drugs that are common to both cancer and auto-immune disorders.  I tried a couple of them during my initial "guinea pig" stage of treating my RA 10 years ago: Prednisone, Methotrexate, to name a few.  None of them worked very well to treat my RA until I started up on Enbrel injections.

Enbrel is different from the other DMARDs (Disease Modifying Anti Rheumatic Drugs) in that they are in a class called the Biologic Response Modifying Drugs.  Herceptin, which I'll be starting next month, is also considered a BRM.  In my highly technical understanding of them, they basically work by taking the trouble maker cells in your body and neutralizing them so that your body doesn't  have a hissy fit and start attacking them (thus, auto-immune response), or, in the case of my cancer, they counter the HER2 receptor cells that talk nice normal breast cells into becoming irresponsible, whacked out, crazy cancers instead.  And while I'm not a doctor OR scientist, I do find it interesting that I'm dealing with 2 separate diseases that seem to have some things in common. Or at least some treatments in common.

So, I appear to be, in the words of Dana Carvey's Church Lady: "Special".  Auto-immune flare ups while they are actively poisoning my immune system.  Just seems crazy to me.

The down side to this is that Enbrel, the one drug that I've successfully used to keep my RA in almost total remission for 8 years is not recommended during chemotherapy (according to my Oncologist). According to my Rheumatologist, it's not recommend to use in patients with active cancers.  I pointed out to my Rheumy, that technically I don't have an active cancer.  I know that the tumor in my breast was completely removed during my mastectomy. So...which is it?  I know that I seem like the poster child for Big Pharma these days, and I'd really rather be part of those few, those happy few, those band of brothers, that experience remission of their symptons during chemo.  But, unfortunately,  I'm not.  I'm hobbling around with softballs for kneecaps and a swollen ankle that makes me walk like Quasimodo or one of the living dead.  So, I'm trying to talk my Rheumy into investigating if I can use a little bit of Enbrel while I'm doing chemo.  The down side is that Enbrel is associated with a greater risk of developing certain types of cancers (not breast cancer). So it would seem that I'm damned if I do, damned if I don't.  But when your choice is between, can I get out of bed and walk downstairs? vs. not;  I'm sort of leaning toward the functional.

In the meanwhile, I have a few short term options to try and make my pain more manageable. I'm already on a daily dose of prednisone, 10 mg. This is helping but not completely. It basically makes the difference in whether I'm able to walk down the stairs like a 2 year old or like an 80 year old.  My doc also had me up my dose of Celebrex to 2x a day instead of once.  This is a type of  NSAID...that is; a Non Steroidal Anti-Imflammatory Drug, which is easier on the Adrenals than full-on steroids and as a COX-2 inhibitor, gentler on the stomach than taking repeated doses of say Motrin 800 or something like that. Gentler on the stomach is a big win for me during Chemo!

My Rheumy said I can also come in for cortisone injections into my knees, which, as much pain as I'm in, are at the bottom of my list of fun things to do.  The problem with the injections is not the injections but the fact that they stick a needle into the kneecap first and suck out all the inflammatory fluid that has accumulated around the knee.  I had this done 3x when I was first diagnosed with RA, and my knees were about twice as bad as they are now. It's something that I'm really not jumping up and down to do (if I COULD jump), even though I know that it means less pain for a few weeks after. So....I'm going to try really hard not to remind my Rheumy that he came up with that option.

The third thing we are doing is....nothing.  Well, actually, something, which is...wait and see.  See if my next round of Chemo: Taxotere and Herceptin might actually help out some.  I have to say that I'm not overly optimistic, but at the same time, what choice do I have?

In the meanwhile, today, I started on my twice a day dose of Celebrex, and I can tell that it is definitely making a difference.  Going into my 3rd week of chemo recovery, it would be nice if I can avoid any more drama, no infections, melting eyeballs, fever, or ballooning joints.  One more week and then I will have my last treatment of the A/C.  I'm so excited to be almost to the halfway point of my chemo treatments!

And I guess, for now I will just have to be content with knowing that I really AM special.

Velcro Head- just for fun

I got a couple of really nice comments on my blog this week and I realized that I probably should try a post a little more often, and maybe not always be quite so pathetic. I don't want everyone thinking that I'm so deep ALL the time....So, in an effort to lighten things up after a few weeks of deeply darkest dark things..

After about 15 days into my second cycle of the A/C chemo, the dark stubble on my head started falling out.  I keep thinking that at some point that I'm going to actually lose ALL my hair.  But no, only the dark stuff fell out last time, which was a relief, because it was NOT a pretty site, but I still have all these short blonde hairs all over my head.  I also have a patch on the back of my head that is still dark and stubbly - it reminds me of those ancient Asian warriors who shaved their heads except for just the patch in the back and then they had a really long braid.  I'm not sure I could rock that look either, but that's what it reminds me of.  Luckily I can't really see that part unless I pull out a hand mirror to check out the back of my head, and these days, why the heck would I do that!??

I tried to take a picture of my velcro head...but you can't really see the blondies! (oh, but the age spots and wrinkles show up real great!)

Another picture to show the current state of my eyebrows and eyelashes. As you can see I still have some of both, but they are in a pretty pitiful state.  I keep hoping that I will be able to get through this with at least some of them still intact, but I still have the 2nd half of this round to go through (I usually go through a de-hairing around day 15) and one more, plus the taxitere. 


Still, a girl can hope.  At this point, the only one who really cares about this is me and anyone who ventures to my house to visit.  
Usually, if I know I'm getting a visitor, I WILL shower, make some effort with makeup and put on my "dress pajamas".  A girl's gotta have SOME standards!

Velcro head PLUS Clean Bathroom!

Speaking of standards, I cleaned my bathroom today!!  WAHOO!...!  I mean...I really HATE cleaning my bathroom, so I'm not excited about THAT,  but what I hate more is a dirty bathroom.  Up til now we have been paying my 17 yo to clean the bathrooms and vaccuum but she quit last week because she got a real job and she is a senior and her life is more important than me having a clean bathroom....   boo for me.  I'm not sure I can hire a real cleaning lady for what I was paying her.  I looked into "Cleaning for a reason".  This is the charitable organization that will set up free house-cleaning for cancer patients, but alas, there was no one in my area that was hooked up with them, so...no free housecleaning for me. 

I'm feeling much better today, so when I say I cleaned it, I mean I really cleaned it...pulled the cabinet away from the wall.... (GASP!) and wiped down the wall behind the toilet and everything.  Then I got hubs to scrape off the nasty 20 yo caulk off of it and recaulk it fresh.   It's still a butt ugly blue cast iron tub with pepto bismol pink tiles, but at least for today it is clean clean clean...(I mention this cuz you can see a bit of the ugliness in the background of my photos- see how clean the ugly pink tiles are???...that is my go to photo mirror to take head shots of me with my iphone.)

Yes, I am finally feeling BETTER!  Not great, my stupid knees and ankle are still swollen and painful, but at least I'm not so nauseous.  At the advice from my oncologist's nurse, I started taking Compazine on top of Zofran and that helped a lot.  Yesterday, I think I even managed to eat 3 or 4 times...(does 1/4 tub of Kozy Shack chocolate pudding count as a meal? I think it does!)

I haven't had a repeat performance of  hives either, so either the steroids that I'm taking are helping or I broke the cycle.  (my bet is on the steroids).  

Swami PIXIE BADASS....?

I also started taking an additional drug that my Doctor prescribed awhile ago to help my antidepressants work better.. (IMHO it's a whole big pharmaceutical scam, but I think that is a whole OTHER blog to talk about!) 


but anyway....

One of the side effects is that it makes you really sleepy, but I've taken it two nights in a row and slept through both nights!  I had really vivid crazy dreams, but at least I slept all night and didn't have to keep waking up to pop some xanax to get back to sleep.  I'm not wanting to take it on the regular, but if it means I can cut out 3 other drugs that weren't working ok, and I get some sleep in the bargain, I'm on board for now.  

It's totally frustrating to be at the complete mercy of medications, but for now, anyway, everything seems to be working, so I will leave it at that and call myself happy.  

I can't get into see my Rheumatologist until this Thursday- they are squeezing me in around 5pm, so any guesses on how long I'll actually be there?  I have a new hat I'm wanting to try out, and it's amazing how much knitting you can get done in a doctor's office waiting room- trust me!

The new hat is a slouchy style beanie with.....a CABLE brim!  I've never done cable, so this is sure to be VERY exciting.  I keep hoping that I will find the magical hat pattern that will not make me look like a Q Tip on legs.  I've knit 4 hats now, and the only one I wear on the regular in that stupid infant hat that I made wrong!  Here's a picture of what the (airquotes) EASY (air unquotes) Cable Slouch Beanie looks like on a person with hair....I'm sure it will look much worse on me, but I'm willing to give it a go, at the very least, I'll finally be able to say that I have knit cables. 

suck it up, suck it up, suck it up

"Straight in, suck up and go,
Cool it, swallow, swallow
Breathe deep, take it all
It comes cheap
Push it through the doors
Because in between the lines
I'm gonna pack more lines
So I can get in
Ooh traffic jam got more cars
Than a beach got sand
Suck it up, suck it up, suck it up,
Fill it up until no more
I'm no crazy creep, I've got it coming
To me because I'm not satisfied
The hunger keeps on growing
I eat too much...I drink too much
I want too much...Too much" ~Dave Matthews Band


Chemo sucks.  Energy, spirit, will, drive, determination, hope, strength. Chemo sucks it all.  I managed to get through my 3rd round dancing with 'the red devil' or 'the red death' or whatever they call this poison they are giving me, but it has not been easy.  I have been quite introspective this week; somewhat by force of circumstance. My body is not cooperating with my will,  so I have spent a lot of days and nights laying in my bed thinking things through. I haven't really even had the energy to write it down, which may or may not be a good thing- thoughts bubble up, bump around in my head and then disperse. Bits and pieces of songs lyrics I've heard or just know too well.

One thing that dealing with a chronic disease like RA has taught me is to recognize the cyclical nature of the beast.  It's totally different than dealing with an acute illness, where your goal is just to hunker down, batten down the hatches, and wait the thing out....It will be over eventually.  When you are dealing with chronic illness, there is no eventually -- there is only ebb and flow.  Good days and bad.  Things start to lose perspective and take on a narrower focus, based on the cycle you are in.  There is a greater challenge in trying to take life on one day at a time, when the day you are in is not particularly good. You start to think, "I feel horrible today...what if tomorrow isn't better? How will I get through it?".  On good days you want to cram as much as possible into it, to the detriment of your well-being the following day or days; because there is no guarantee that you will have another good day tomorrow.  Your focus becomes more black and white.

When I am uncomfortable in my body, my brain starts to think in absolutes. I feel miserable, therefore my entire life is miserable.  I can't stand the look, smell or taste of the fresh tomatoes from my garden (yes, still, on the 15th of October in Michigan). This translates into my hating my entire garden at the moment. It's too big, too overgrown, too weedy...too...too...much.   My house is a mess, dirty, dusty, hairy, smelly -I can't stand it. Fight or flight.  I need to get out of this place.  Or, if I can't flee, then I will just turn bitchy or morose.

My dear husband, the eternal optimist, spent time in the army, in Georgia -in the summer- in his youth. He has that perpetually annoying perspective of knowing just how bad things COULD be and this helps him to deal with his life's ups and downs.  I know that my own experience with this cancer will alter my external gauges, give me some benchmarks to characterize what truly sucks and what is just uncomfortable at the moment.

Reading through the October, 2011 issue of Yoga Journal, yet again this week, I came across an article; "7 Tools for Welcoming Change".  I have probably read this same article 3 or 4 times in the past month.  But re-reading it this week, after a week of so much pain, physical discomfort and bleak mental outlook, I found some wisdom in it. Three things in particular stood out for me this time. Know that change is inevitable; meditate through the discomfort;  and practice letting go.

I'm very thankful to my friends and family this week, who, despite their own personal discomforts, took some time out of their week to share a belly laugh, a well-timed phone call, a hug or a gift with me. I have been stuck inside my body this week. Severe nausea, weakness, fatigue, sleeplessness and immobility have been wreaking havoc. I have lost any sort of navigation as to where I am in the cycle of this treatment.  Losing those landmarks, I found I was actually able to let go of some of the baggage I had picked up along the way.  I practiced letting go of the frustration of not being able to manage my external circumstances.  I laid in my bed, in my little orange room and looked at the beautiful color on the walls, the cloudy sky ceiling and thought, I love this house.  I might not like it in the state it is in at the moment, but I DO love it. I love my garden, my husband, my life. These dark moments are not what my life is, they are just momentary shadows that will soon blow over and reveal a brighter existence.

doo whack a doo whack a doooo....

Connor's Battle:
 yeah...last week felt a lot like this!

Well, the plaque of locusts that descended upon our house last week seems finally to have started to lift, and with the sun shining outside, I am almost feeling back to normal.  Well, CLOSER to normal anyway. The week started off not so great, but by the time Thursday rolled around, I figured it was smooth sailing through the weekend and up to my 3rd chemo treatment on Monday.  Alas, I was sadly mistaken.

Thursday's appt with Dr. Booby went fairly well, the catch being that I started my period....(excuse me!??).....that morning. One week late for the first time in, um, probably 9 years.  I had assumed that last time was the, ahem, LAST time, at least for awhile, since side effects of chemo include loss of menstruation...one side effect I'm more than happy to have for the next several months! It may just be putting in a last hurrah, it certainly was acting strange and erratically, which is really not how you want your period to act, if you have to get it during chemo. Anyway, the only reason I bring this up is to explain, in part, the blubbering, crying, soggy mass of goo I turned into as soon as Dr. Booby's well meaning nurse bubbled into the room and asked me how things were going.

Honestly, I was dreading going to the appointment, but hubs and I wanted to make sure that everyone was on the same page as far as what to expect from that end of the whole process. Right now, I don't want anyone putting any more foreign bodies inside me, sticking me with needles, or doing anything that involves poking or prodding or expanding.  We resolved in the end to continue on this course, that is, doing nothing with the robo-boob at the moment, and meeting up again at the end of November to see if I felt like starting to get some 50cc fills to get robo-boob ready for the time when I can bid it "adieu".  As much as I DON'T want anyone touching me right now, I also do NOT want to live with robo-boob any longer than I have to, so with an expected 8 week prep time to get the tissue expanded enough for reconstruction, I could be rid of it maybe by March at the earliest.  Dr. Booby reminded me that THIS part was supposed to be the fun part to look forward to, a vibe I am definitely not feeling at the moment, but I feel much better after talking with him and listening to my various options.  Alas, what was to follow made the discomfort of robo-boob
so, so trivial......

2 versions of my Baldie beanies...
the pink one is STILL too big
and needing to be ripped back

Friday, I woke up feeling the UTI flaring a bit again, despite the daily D-Mannose doses, but my fever was gone, and my sore throat and swollen glands were subsiding.  I was looking forward to having a lovely weekend, and since my son was still at 5th grade camp until the afternoon, I decided to lay low and finish watching the 2nd season of Joss Whedon's "Dollhouse" on Netflix, and work on increasing my stash of baldie beanies.

I noticed my left eye was gumming up and would not stop tearing, but I attributed that to allergies, the unseasonably warm weather, and the fact that my house has not been thoroughly cleaned since May of this year. My major concern was that the constant wiping of the eye was going to rub out my rapidly thinning eyelashes, which was bumming me out. I went to bed Friday night with an oozy eye and a right ankle that was a little stiff.


Saturday morning, I woke up with both eyes crusted closed.  Additionally, as I tried to get out of bed, I noticed that the pain in my ankle was so bad, I couldn't bear any weight on it.  My son - who had sneaked into our bed at some point in the wee hours of the morning to snuggle - ended up having to assist me to hobble into the bathroom where I had to soak my eyes with a warm wet washcloth until I could get them open!  No denying at this point that the inevitable had occurred...the dreaded pink eye...in both eyes!  Also alarming was that my ankle and knees had ballooned overnight in what I could only assume was a Rheumatoid Arthritis flare....something I had hoped and prayed that I would not have to deal with since I was actively working to obliterate my immune system.

Darth Maul impersonation. 

Luckily, my primary care physician's office has Saturday hours, so I hobbled in and got meds for the UTI and the pink eyes, and was told to take some advil for the joint swelling.  2 days and counting until Chemo, and I certainly did NOT want to be feeling crappy even before I went for treatment, so I hoped the meds would kick in quickly and do their job.
Hubs joked that I looked like one of those people in the horror movies about Ebola, where their eyes melt and fall out of their head.  I have to admit that option sounded more appealing than the throbbing, crusty eyeballs that I was dealing with!

Monday, I hobbled off to my chemo appointment with my hubs, not at all looking forward to dealing with Chemo after-effects, UTI, pink-eye and swollen joints, but resigned to my fate.  Got my blood drawn, and then went in to see the Onc.  I told him I had been having some trouble, and when I looked up at him with my eyes of blood, he actually jumped a little and let out a startled "Whoa!".  Not an encouraging sign from a doctor who deals with sick and dying patients, I must say.  At this point, he told me that we shouldn't do chemo with my eyes looking like Darth Maul.  I asked him about my swollen joints and if I could go back on my Enbrel injections for the inflammation.  He told me that Enbrel was 'contraindicated with chemotherapy' and that we would have to manage the inflammation with steroids for the remainder of the chemo treatments.

UGH- Steroids!

Smuggling golf balls in my ankles

What I don't understand is how my immune system has any OOMPH left in it to attack my joints when I'm actively killing my immune system every three weeks with chemo?  Am I getting punk'd from the universe?  Is this my body playing punchies with me? "You attack me, and I WILL retaliate!"  What the Cabbage, man?  I have been feeling crappy enough just dealing with the side effects of the chemo, but I have still managed to go to two consecutive weeks of yoga class.  Throwing in a relapse of RA is just NOT cool.

I'm not sure which was worse: bracing myself for chemo when I felt really bad or going there and getting turned away from chemo.  Now my schedule is off a week, at least, which means that I will not get my last chemo treatment the day after Christmas, but will go into January --- IF--- I don't have any more delays.  It also means that I'm still only 2 treatments down, that is, only halfway through the first cycle, versus, 3/4 of the way done.  It's a small thing, one quarter; but the greater effect on the psyche is enormous when you count every day how many more days and how many more treatments you have to get through.  Overall, and with the benefit of hindsight, it was a relief to get a brief reprieve and have an extra week to recover, recoup and fortify myself for the next round.

(you are saying to yourself right now...wow! poor girl, all this crap she had to deal with really sucks rocks...but wait, it's NOT done yet!)

Pretty much immobilized for the remainder of Monday and Tuesday, I continued to work through our Netflix instant queue and checked off the entire first season of "Stormchasers" while working on my knitting. Tuesday evening, trying to get a load of laundry in the wash, I noticed that I had a 'hitch' in my left hip that twinged every time I bent over to put another handful of clothes in the machine.  I did some yoga stretches before bed to try to work it out a bit, including Viparita Khorani (legs up the wall) to try and help the swelling in my joints.

Wednesday morning, though, the shit really hit the fan.  I woke up and tried to get out of bed.  There was searing, blinding pain shooting down my left hip and leg. I couldn't sit up, I couldn't roll over, I couldn't do anything. Just laying there doing nothing my hip throbbed.  I was sobbing from the pain when my hubby heard me from his third floor home office and came down to check on me. He finally managed to get me out of bed and into the bathroom where another trial of pain awaited me. Any action of squatting, sitting, bending, or moving any part of my lower half resulted in excruciating pain. I think B literally had to pull me off the toilet because my body was rebelling against any movement at all.  So...skipping over the next few hours of sobbing, liberal dosing of percoset and unconsciousness, I made another trip BACK to my Primary Care physician office.  She pronounced sciatic nerve flare up and gave me a shot of steroid in my backside then gave me a pamphlet of exercises (aka yoga poses I already know and do) to stretch out the piriformis muscle and hip flexors.  Oh, more importantly, refilled my bottle of Percoset, since I had managed to finish off the remnants from my mastectomy. (just to prove I am NOT a drug addict - I had like10 percoset left over from my mastectomy in July, and just broke them out now for relief).

Hobbled back home and spent the rest of the week in semi-unconscious drug induced stupor whenever possible.  By Friday, the steroid injection seemed to have started to work on the sciatic issue and I was moving in and out of bed with a little less pain, the blood eyes had faded away and my UTI seemed to have cleared up.  Unfortunately, the steroids seem to be doing nothing for the joint inflammation.

My niece, Miss Ellie getting
ready to climb over the pew

 I was mobile enough (i.e. drugged up) to go to my SIL's wedding Saturday night and to see my new 4 day old niece as well!  I even got to hold her a little bit (of course not as long as I like!)  The wedding was beautiful, the weather was amazing, and most importantly, I was able to GET OUT OF THE HOUSE!  I got to see all my in-laws, my 7 nieces and nephews and feel like I was a part of the land of the living for a while.

Niece # 5- Sara Elizabeth-born Tuesday!

 I realized on the way home from the wedding reception that probably the worst part of this past week was the feeling of isolation that came upon me. It's the dark nights of the soul, when I am laying in bed alone that I feel at my weakest,  when I feel like I can't bear to continue the fight, not like this, so beaten down physically and emotionally.  This journey seems so long and one-sided, there must be something on the other side that will make it all worthwhile, but I haven't been able to discern it yet.  I was watching the end of LoTR, part 3 with my son Friday night, and Frodo was giving a little speech that really spoke to me. (and also to prove, that yes, I truly AM a geek for quoting Frodo in my blog!)

"Thirteen months to the day since Gandalf sent us on our long journey... we found ourselves looking upon a familiar sight. We were home. How do you pick up the threads of an old life? How do you go on... when in your heart you begin to understand... there is no going back? There are some things that time cannot mend... some hurts that go too deep... that have taken hold."

I'm trying to figure out how I will ever pick up the threads of my old life when I am done. Even if I wanted to pick up my old life where I left back in May, before 'the lump', I cannot.

I am changed forever. The part that has yet to be revealed to me is what I have changed into.

Om shanti...shanti...shanti.