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.

play it again Sam, or...Once more, with Feeling.....

BLING from a long lost
High School friend.

I'm on my third week in the 2nd cycle of Chemo, and Monday started off promising, I had energy, I didn't feel queasy and lightheaded and I got some errands run and dinner cooked but by Monday night, my throat was sore, my glands were swollen and I was running a temp of 99.6.  Not enough to call the doctor but enough to make me feel crappy.  So it's been going on and off for three days now.  Same thing happened last cycle right around this same time, and the nurse at the Cancer Center told me it was probably a virus, no big deal.  This sort of stuff is what really gets me down.  No big deal translates into; "It's not life or death",  which is, um, comforting?...BUT ....it still makes trying to cope with all the other stuff pretty darn hard. I spend the first 10 days telling myself I just need to get through the first 10 days, then I will start to feel better and then, this....with another round of Chemo facing me at the end of it all.  It wears me down.

Additionally, I think I am fighting off a urinary tract infection. Luckily I keep uristat pills on hand all the time.  It hasn't gotten bad enough to call the doctor so I'm just self medicating and trying to drink a lot of water with lemon juice to flush it out.  My girl K from ME gave me a tip about D-Mannose, which is supposed to be a natural remedy for UTIs.  I may have to drag myself out to Harvest Health to check it out.   Cytoxan, one of the Chemo drugs in this round, irritates the bladder, which can lead to cystitis, basically an incurable condition that feels like a bladder infection - something I'm vigorously trying to avoid.

ok.... got the bitchy chemo stuff out of the way...on to happier things!

My Seestor and me at Race for the Cure 

This past week was busy for me, lots of things going on.  Saturday was Susan G Komen Race for the Cure.  Team Lou Lou raised almost $3000 so far!  There were a total of 6000 people there- it was a tad overwhelming.  I ended up doing the 1 mile community walk with my son, oldest step-daughter and my BIL and his wife (who was knitting on a cable knit hat for me the entire time!).
That took a lot out of me, so I'm glad I didn't try to do the whole 5K. It was very cool though, and I definitely want to do it again next year, and do the whole thing.  My seestor and her girls are plotting some dazzalicious team outfits that I'm trying not too think to hard about.  I'm expecting sequins, feathers, tutus, capes, tiaras or a combination of all. we'll see what happens.....

Sunday, my girl K from work had her baby shower, and I didn't want to miss that for anything! I got to see my best girls from work plus oooh and ahhh at all the cute baby stuff, which I also love to do. I knit up a cute little baby hat in MSU Spartan colors so little baby H has appropriate attire for game days or any other day.  Here's a snap of the hat pattern, modeled by my ridiculously cute little niece, Ellie...The one I made for baby H was dark green, heather grey and sage green stripes with manly i-cord tassels instead of girlie tassles.

Inspired by it's cuteness on baldy babies,  I worked all day Friday to make a grown up version in  pink and grey stripes for my bald head to wear on race day. But, in my usual way of just winging it, it turned out ridiculously tall and poorly fitted, and I didn't have the time or heart to try and make it right at 8pm the night before.  I'm on my second rip back and it still isn't right.  I will need to rip back once again and try to turn it into another little baldy beanie and then go back to Ravelry and find a real pattern if I want a fancy hat.

Now that the weather has turned a bit chillier, I'm finding my one warm hat is not sufficient and CERTAINLY not appropriate to be seen in public.  I really was loathe to wear it to the race, but lacking any other warm options, I had no choice. A friend of my seestor made a polar fleece pink ribbon scrunchy turban for me.  It is really warm, but a tad bit too big to wear on my bald head right now- I'm wearing it OVER my other hat in this snap. I'm channeling my inner GURU (tho hubs says I look like a creepy pedophile...?!) I'm wrapped in a Pink and Sparkly wool shawl, compliments of my Indian friend S, who sent it to me from Houston. Plus don't forget the pink feather boa --a REQUIREMENT for Race day, of course--- from my girl S in Indy. Trust me...this was a pretty mild look for the event.  I almost wish I had skipped the race entirely, and just spent the time taking pictures of all the outrageous and fabulous outfits that I saw there.

Yesterday, I visited the Gilda's Club Clubhouse in Lowell and was 'orientated'.  Now I can go to support meetings and other happenings there. This clubhouse was funded by the Pink Arrow Pride II event and shares the old victorian house in town with the Lowell Senior Neighbors.   They also have the big clubhouse in downtown GR, but it is at least a 30 minute drive downtown, so I wanted to check out the haps locally first.  I found out there are a few other women in the support group with breast cancer, so it may be a good place for me to meet some of my community who know what this crap is all about.  I have an awesome support group, but I'm of the opinion that you can never have too many friends.  This entire journey so far, I've tried to dedicate to taking risks and opportunities that I would have avoided in the past, and one of them is putting myself out there in order to meet new people.  You never know what lessons they may have to teach you.  I couldn't make the support meeting last night as my son is headed off to 5th grade camp today, and I wanted to make sure I had time to get any last minute packing done.

Today is a free day, I'm still running a low grade temp, my glands feel like a swallowed some golf balls, and I've once again gotten an itchy rash on my neck and wrists.....what the cabbage, dude?!

It is a grey day, so I think I may try to lay low today and maybe start watching LOST episodes on Netflix, since I missed the hooplah when it was actually running on network TV.  Hubs has a cold or something, so he is feeling pretty mopey as well. I'm telling you, it is a regular laugh riot at our house this week.

Tomorrow, I meet with the plastic surgeon for a follow up.  At this point in time, I want nothing to do with him- I don't want one more needle, scalpel or anesthetic anywhere near me!  But I do want to talk about how long after chemo do I need to wait to do the reconstruction and what I can expect it to look like and feel like. I can't even bear to think that I will have Robo-boob for at least another 6 months, and I'm very worried that the pain and discomfort that I have in my pec will not subside even after the expander comes out and the new boob is in.  It makes me wonder if it will be worth going through 2 or 3 more surgeries-definitely NOT what I was contemplating when I envisioned new boobs for my birthday!

Wow...that is a lot of stuff going on, and I thought I didn't have enough to write about!

There are so many cool little things happening in my life right now, sometimes they get lost in the murky waters of this giant pool of suck.  I got the cool sparkly ring,  pictured at the top of this post, last week from my girl M in CA....a long lost high school art class chum.  My neighbor friend came over last week to help me prep my garden veggies for the freezer so that they didn't all turn into slime in my fridge from lack of effort, energy or appetite. Then she did my dishes and cleaned up my kitchen!  I had 5 friends call me last week to see how I was doing...even though I didn't get to talk with all of them, the fact that I know they are out there and thinking about me helps so much. Another friend of mine, whose twins are friends with my son, dropped off a bag of groceries for me, with juice, protein powder and peppermint candies to make sure I get through my queasies well nourished.  Additionally, I got a wad of gift cards to Meijer as part of the Lowell Community Support program, another program funded by our Lowell Pink Arrow Pride organization.  Lastly, I spoke with a professional fine art photographer, a woman who was in hubs Yoga teacher training class, and she is putting together a collection to showcase the strength of cancer survivors and wants to include me in the photos.  I'm a little nervous about it, since I'm horribly unphotogenic, but I love the idea and want to be involved in the effort.

These last few weeks have been really bad for me, the chemo's disruption of my hormones add to my already addled psyche and the stress of dealing with illness, sleep deprivation and the daily grind just pile up until I feel totally overwhelmed.  It helps to remember that there are people out there who are thinking of me, friends and strangers alike, who donate their time, money, talent, and energy to show that I'm really not alone in this journey I'm on.  I'm so thankful to all of them.

Namaste

It's the small things

Chemo comes at you from all sides:

How is it fair that I'm losing the hair on my head, but I still have leg hair and chin whiskers???  Really...Chin Whiskers?!  On the flip side, when I went to pluck it, it kind of just fell out.  I'm not sure if that made me feel better or worse.  I'm protesting shaving my legs on principle. I figure I may as well have some hair somewhere.

"I am not a pretty girl...

"..that is not what I do
I ain't no damsel in distress
and I don't need to be rescued
so put me down punk
maybe you'd prefer a maiden fair-
isn't there a kitten stuck up a tree somewhere?"
~Ani DiFranco


In Gleek speak, I guess you could say this song is one of my personal Anthems.  Hubby calls this my 'angry bitch music'.  I think it's pretty fitting for what I'm going through right now.


This has been a rough week.  I expected that chemo would be hard, physically.  I also know, logically, that I will not feel this crappy forever.  I thought that I was mentally prepared to face this ordeal.  I didn't fully realize that in addition to killing off the cells in my body; in my blood and bone marrow, in my hair, my skin, my mouth, my throat, my stomach; that this chemo would suck the strength and hope out of my spirit.  I am feeling defeated.  


This is the part I did not want to face. As my body grows weaker, so does my resolve.  Some days I feel like I am not strong enough to make it through another week feeling this way, let alone 4-1/2 more months...and that is just the beginning of it.  I still have another year of IV treatments after with a biologic drug that will mess up other parts of me, then another 5 years of hormone therapy.  I haven't even looked at what to expect with those.  


I read through my 'chemotherapy and you' manual again yesterday, read about all the crap that chemo does to your body.  I have been concentrating on the physical aspects of this treatment - most people can relate to feeling physically crappy - and ignoring the mental.  It's all just a state of mind.  Power of the positive. psyche yourself out. om. 


Yesterday I gave up.  I can't do this on strength of resolve alone. I start on anti-depressant medication today - again.  One more chemical to help my body do something it can't do on it's own. This is the part that no one wants to talk about, but nevertheless is yet another piece of this monster that I am dealing with. 


Physical illness is one thing; acceptable, safe. Mental illness is completely different. People don't want to talk about that. *I* don't want to talk about it.  I can put up a pretty good front.  I hoped that this experience was the catalyst I needed to get my brain out of the dumps and kick it to the curb.   I went off my anti-depression meds AFTER I was diagnosed with cancer.  And up to this point, I was feeling pretty good about it. Confident that I could handle anything this bitch could throw at me.  I knew she fights dirty, but didn't fully comprehend just how low she goes- way, waaaay back to the very back of the closet.  I think I gave away my hope stone too soon. I had hoped I didn't need it.  ha...ha..... ha.    Luckily, I have some new little pink ones in a bottle waiting upstairs for me.


---

Not wanting to leave this post on a completely low note, I want to share some coolness in the midst of this giant pool of suck - the Susan G. Komen Race for the Cure is happening this weekend.  I have a team of 27 people so far that are showing up on my behalf.  I am shocked and awed by this.  Our team has raised over $2100 so far- to contribute to the overall W. MI event goal of $500K. 


The Friday before my last chemo session, my girl K, from work, called me up with some unexpected news.  A manager at my company had heard about me and asked if the running team there could join my team for the race.  One of the presidents contributed money for pink company T-shirts, which they are selling to raise more money to donate in my name.  People I don't know, showing up on my behalf to raise money for the Cure.  Amazing. Inspiring. I'm looking forward to it. hmmmm....... I guess there is a little hope in that bottom drawer of that old dresser in the back of the attic after all.

I don't have my new pink Komen shoes yet. Probably won't have them in time for the weekend.  But I do have some spiffy new laces for my old pair to get me through, compliments of my girl J, from Shelby Twnship, who sent them to me on her Aunt's (a BC survivor) behalf.  Thanks to all the people  out there who rooting for me right now. 

Going...going...gone

I  have been bald for a week now. It sucks.

Getting ready for the Pink Arrow Pride Game.
Hair is falling out bigtime!

At the game with my family

I thought I was going to be ok with it, I really did.  I thought that all the work I had done before, cutting off my hair, bleaching it platinum, dying it hot pink- would give me control over being bald, but it didn't prepare me for this.

Despite what people may think or how I act, I'm actually a rather shy, insecure person. Going really crazy with my hair was way out of my comfort zone, and gave me some confidence and bravada that I was really the one in control of this whole experience.  And while I had my hair, I felt that feeling would last through the whole journey.  I didn't anticipate the sucker punch to my ego of feeling physically shitty, then looking in the mirror and seeing myself bald.  I look sick, I look old, I look....bad.

My darling son told me the other day: "I don't think you look bad Mom, you just look like...you".  This of course warms my heart; he has been so cool through this whole thing.  Then he tells me he can't remember what I look like with 'normal' hair.

In the week between today and last Saturday, between being hairy, and being bald, I have had another round of chemotherapy, and I know this is contributing to my feeling crappy.  I have a slew of  'little' issues that just niggle away at my well-being and drive me crazy.  There is saying that I love, from the show "Jon and Kate plus 8"  (before they went really nuts); Jon says "It's like being pecked to death by ducks".  Annoying and slow. All the little things that add up to one big annoying pool of suck.  Things that don't count as serious 'side effects' of chemo, yet nevertheless must be dealt with in addition to everything else.

1. Once again, I have hives after chemo. A lovely rash on my neck and arms and a little on my face.  I made sure that I didn't use anything new or weird right after chemo, and made a point to shower right after I got home.  They are less severe this time than last, but still there, giving me one more thing to be uncomfortable about. One more chemical to put on my body to try and get relief.  I told my oncologist and nurse, and they just shrug and say.."hmmm, weird".

2. My port 'suture' incision is irritated. I have two scars on the right side of my chest (just to make sure that I have NO comfortable sides). The large one is right above my chemo port and in addition to having this huge 'goiter' thing sticking out, there is a nasty scar right above.  At the end of all this, I get to be cut open again and have it removed.  Leading from that is my catheter, which is then sutured into the vena cava, right about where my collarbone is.  It doesn't feel good, even after more than a month - I have a big tube sticking in my neck and I can feel it!  On top of that, since the weather turned colder, I have been wearing less tanks and low neck tees, and the scar over the catheter is getting rubbed raw by the higher necks of my t-shirts. There isn't much I can do about it, other than stick a band-aid on top to keep it protected.  My chemo nurse offered to call the radiology department to see if they can or can't do anything about it, but to tell the truth, I'm really not up for more surgery, and even less up to someone telling me there is nothing they can do about it.

3. I have acne. My immune system is jacked up, and my hormones are going crazy- on top of everything else to deal with, I have bad skin.  I go from bumpy to extra dry and scaly back to bumpy.  ugh.  I don't even know what to put on my skin right now- does the wrinkle cream go on top or under the zit medicine?

I know this first 10 days are the downhill slope of chemo and then, I'm hoping, like last time, to slowly start to return to feeling 'normal', which has, in and of itself, taken on a whole new meaning.  I don't feel normal, I feel a bit like Frankenstein right now. I can't imagine how I will ever feel normal again.

Getting ready for 'the shave'

A brief break to appreciate a real mohawk

Bald!

"That girl is poison..."

Round 2 of Chemotherapy this afternoon..."DING".  


To say that I'm dreading today would be an understatement.  


The first time I didn't know what to expect, and while overall, I'd say that the entire cycle was not as horrible as I expected, that first night after was really, really bad.  I've changed my anti-nausea drug to a stronger one, and will take it when I'm done, rather than waiting until I start to feel bad.  


Additionally, I have a school meeting tonight, too, that I need to go to, to learn about 5th grade camp that C is going to in a few weeks.  B can't go because he starts soccer practice tonight.   Miraculously, life continues around me, even when I feel like mine is at a standstill.


I'm not even sure what to write about sometimes. Sometimes I don't write in my blog not because I don't have anything to say, but because I have too much.  Do I write about how different my life is since I was diagnosed with cancer?  And yet, it is not so different. I still have to wake up (even if I don't GET up), laundry still needs to be done, bills to be paid, children, dogs and cats to be taken care of, homework to be checked, etc, etc.  So, having cancer didn't change things much.  This is a temporary speed bump in my life, if I choose it to be so- I just need to keep going and pretty soon this whole experience will just be a memory.


The problem is that cancer changed everything all at once, and then continues to insinuate itself into my life on a daily basis. How can I NOT change my life as a result of this experience?  I experience everything around me with a new perspective.  I cannot bear to go through another 5 months of being poisoned for nothing.  


I pray for clarity of purpose.  I do not know what I will be in a year. I want to believe that my new life plan will slowly unfold over these next long months and my job is to keep my eyes open so I don't miss the opportunities that rise up in front of me.  I must believe this, or I cannot go on. 


"Our deepest fear is not that we are inadequate.  Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us."
 --Marianne Williamson