General update

Tomorrow I go in for my third round of chemo.  3 down (and I refuse to say how many left because it's discouraging.  So we stop at 3 down).  Since it's Valentine's Day it only seems appropriate (not to mention ridiculously romantic) that Scott comes with this time.  This will be his first time coming...a Valentine's Day to remember I'm sure.

There seems to be a pattern in regards to how I feel now....which I hate to even say out loud because this round will be completely different and will shoot to hell all sense of control this pattern has given me.  But so far - I'm sick the first week after chemo.  I'm not throwing up, but I'm sick. I have little to no energy, I'm shaky, my appetite is off, I'm nauseous, my taste buds are off, my mouth hurts, my head hurts, my brain feels empty except when I'm feeling miserable.... and honestly the list is endless.  The thing about chemo (for me) is that it hasn't been any one symptom that's bringing me down.  It's the countless number of ways that it's making my body not my own that's really difficult. I just feel bad and weak and emotional for that week or so.

I got to the point this time where I told my sister I couldn't do it anymore.  I don't have it in me, I'm not strong enough, I give.  I'm done.  I can't do it anymore.  Her response:  You can and you will, and you are.  Funny enough, while I was giving birth to Elliott (naturally, mind you) I said I can't do it anymore.  Her response:  You can and you will and you are.  Hmph.  I'm not sure who she thinks she is.  So somehow, a week post chemo comes around and I start to feel like I'm going to make it, and maybe my sister is right.  I have another one behind me now that I never ever have to do again, and I'm starting to feel better.  Then usually by the weekend (9 days post treatment) I feel worlds better - and so I have a week or so where I function relatively normally before I go in for more and it starts all over again.

My buzz cut is still falling out.  It kind of sucks that Scott got to shave his head and be all supportive, and now his hair is growing in nicely and he's gorgeous, and I get stuck with a mostly bald on the top but a patch in the front and a buzz in the back hairdo.  I told him I think to REALLY be supportive he needed to get my exact hair do.  He laughed out loud and said "oh hell no."  See?  Not very supportive. 

Before I started treatment I figured I would wear my wig most of the time, sometimes I'd wear hats and I'd probably never wear scarves.  Turns out I haven't worn my wig once, I sometimes wear hats and I'm mostly wearing scarves.  The wig itches and makes me feel...wrong.  I have no idea how to explain it.  When I put it on and look at myself I feel sad.  When I put a scarf on (which, my scarf obsession I've always had has sure come in handy!) I feel better.  I am mostly bald around the house, except when I sleep because I'm freezing.  

One day this week I was getting ready in the bathroom and Cameron was in there with me talking.  I went to grab my scarf to wrap my head up and he said "Mama, I kind of just like you just the way you are.  I think you look beautiful just with your bald head."  I was absolutely blown away.  I can tell by the way they look at me that they literally don't see my crazy bald head, they only see me.  Which is more than I can say for myself.  When I asked Elliott if he was comfortable with my bald head his response was "Yah sure!  I'll tell you if I change my mind."  Ahhh....typical response for both of them. 

As always, the amount of support we are receiving is mind boggling.  I wonder if people realize just how much it means to us.  It really feels good to know how many people are sending me their positive thoughts and prayers.  Every single message I receive is touching and humbling.  It seems like I can't say it enough:  thank you thank you thank you.

So - round three tomorrow.  Moving only forward.

All about my hair

I bought my wig from a breast cancer survivor who said her hair started falling out on day 13 (after her first chemo).  On day 13 my hair started falling out a little bit, and on day 14 it started falling out in handfuls.  It was everywhere.  I was at work, and actually left at noon to work from home because I couldn't stop crying.  I cried for so many reasons....I was so mad at the cancer, again.  I was scared of what I was going to feel like bald, and mostly I was disappointed in myself.  I didn't want to feel this way about losing my hair. I wanted to feel strong and worried about more important things, not my silly hair.  Everyone told me to just shave it - and I literally couldn't imagine just taking a razor to my hair (or having anyone else do it) and just shave it.  It goes against nature.

So I went to my second round of chemo with a trail of hair behind me.  Then, I left chemo and went to have pizza with my family - and then to Juut salon to shave my head.  The girl that shaved my head was so beautiful - in all senses of the word.  Her mom is a 5 year breast cancer survivor, and her best friend is just finishing her last round of chemo for breast cancer.  She turned me away from the mirror as she shaved it, and then turned me away from my sister too.  She was a mirror of how I was feeling.

I didn't look in the mirror for several hours.  I was physically hurting.  I spent the first part of my life hating everything about my hair.  I was a redhead, which made me different, and when you're a kid different is not necessarily good.  I always wanted my hair to be anything other than it was.  Then, I hit my 20's and I WAS A REDHEAD!!  :)  I grew to love it and feel fortunate for it.  Suddenly be different was good.  And so really my hair has been a major source of my identity, good or bad, for my whole life.  And now I'm bald, because of cancer.

When my babies saw it the first time, Elliott just instantly wanted to rub it, with little emotion involved.  Cameron said "I really like it mama".  And then followed me around, all night long.  He was touching me every minute.  In private an hour later he told me he doesn't really like it, but didn't want to hurt my feelings.  I told him I didn't really like it yet either, but we would get used to it together.  Scott seemed to really like it, I think he was excited for it!  :)  That night, he left to go to yoga and called me 20 minutes later and said he missed yoga and was on his way home.  When he walked in - he was bald.  He had shaved his head too.  So sweet.  And surprising.

I'm already doing better today.  I'm past "how am I going to do this" and on to "it is what it is."  I have cancer, I'm going through chemotherapy, like too many women before me and after me.  Part of that process is losing my hair.  It's temporary, I can't hide it and I can't control it.  I am trying to focus now on how many steps of this journey are already behind me, and there are a lot.  Just moving forward, slow and steady.

Here are a couple of pictures - the first one was at the salon.  I thought about not posting it, but this is a journal of what I'm going through - and this picture was part of what I went through.  The second one is of my lovely husband and I, when I was at a much better place.

One week under my belt

I officially have my first week of chemo under my belt, thank goodness!  I literally could not stand the anticipation anymore. 

I meant to update this along the week, but honestly the way I feel changes so often that I couldn't sit down and feel good about what I was about to write.  I have said all along that I have to learn to live in today, and one day at a time, but this is more like one hour at a time! 

The best way to describe how I have been feeling is not very PC, but, it is what it is.  I feel like I'm 6 weeks pregnant and got SUPER drunk last night.  Every night, last night.  The 5 month hangover pregnancy.  Without the joy of the baby or the fun of last night.  I wake up every morning and feel terrible, but I get out of bed and I make a green juice (3 pieces of kale, 2 stalks of celery, an apple, 3 pieces of romaine, a carrot and half a cucumber) and I swear it makes me feel better.  Then the rest of the day is a toss up.  I can't let myself get hungry, which is hard because I'm feeling sick, but if I get hungry I get more sick.  I'm tired and many days I have fallen asleep on the couch after the boys go to bed (at 7:30).  I'm drinking close to 80 oz of healthy fluid a day - 64 of those are water.  Blech.

One day this week a co-worker noticed me sleeping with my head on my desk (it was necessary).  The next day she brought in a cot and put it in an empty office with a beautiful quilt and little pillow.  Today, I rested over my lunch on the cot and have felt great all day.  I love people.  We've also been "going to the freezer" lately and eating with extreme gratitude for the food that has been made for us.  I basically cook(ed) 7 days a week, and that's just the very last thing I want to do when I get home from work now.

Cameron and Elliott are doing well.  We've talked about it as much as they've wanted to, and I've answered all of their questions as honestly as I can.  They're 3 and 5 so they don't get overly deep yet.  Elliott's teacher told me that he told her that his "mommy will probably be bald at spring", and I'm very happy that he's feeling comfortable enough to talk to his teachers about it.  They've been amazingly sweet. 

I'm proud of my body, what it's endured and how it has endured it.  I would be a lot more proud of my body if it hadn't gotten cancer in the first place, but that's behind me now. 

Operation Search and Destroy

Round one of chemo is DONE!  I'm pretty sure it did 1/12th of its job, so I figure I'll go back 11 more times to make sure the job is completely taken care of.

It was overall a very pleasant experience.  I'm feeling fortunate to be receiving care where I am.  Everyone has been so wonderful.  Plus, Hope and Erin were both with me, which as always - was amazing.  There's a reason the three of us have been best friends for 20 years, and you could feel it in that room today.  I love those girls intensely.

Part of what I was most nervous about was them accessing the port since it's still sensitive to the touch, but it was a piece of cake.

After she accessed the port she drew my blood (right from my port) and then gave me three rounds of pre-chemo drugs.  Two anti-nausea and one steroid. Then she got herself fully gowned to start the good stuff.  First she injected the "red devil".  That one was pushed into my port instead of an IV, and it was several syringes of bright red....devil.  Then the second one was in IV drip and took about an hour.  In the middle, someone from the pharmacy came and dropped off 5 take home meds - including an ambien.  Apparently the steroids steal the sleep from some people, and I'm just not okay with that.  I can tolerate a lot, but not sleeping is not one of them.

After that - she sent me home!  Just like that.  No waiting around to be sure.....of anything.  Just sent me home.   So, I went home very very tired and sat next to Erin while she read stories to the boys and Scott cooked.  :)  Then Erin left, I took over the story reading....and I started to get sick from the smell of the cooking.  I wanted to cry.  Everyone says this is the best day, the last thing I want was to already be nauseous.  But, I think I had just gotten too hungry without realizing, so I ate some dinner and feel better again. 

I would call today's mission a success. 

The weapon

The port is in. My friend Hope decided we'll call it "the weapon" because of the damage it's going to do to this stupid cancer, that I don't have any more because they got it all. The procedure was relatively fast - and I was sedated but not under general anesthesia which makes the recovery a thousand times better. For those that don't know (because I wouldn't know if I wasn't going through it) the port is a...thing that they place in my chest that has a little tube that connects to my artery. So when I have to have chemo they'll just puncture the piece of skin over the port each time, and then inject the chemo there - and since it's connected to my artery it will provide the best flow for the chemo. And they spare my veins. So I have a tiny cut on my neck, and another about an inch on my chest.

Here is a picture of my crazy support system before the procedure....

Blue

This last week has been hard.  I think I grieved the information that my cancer is triple negative almost as bad as I grieved when I found out I had cancer.  I had just heard so many positive things about being NOT triple negative that it was hard to come to terms with having it.  Again. 

Then I caught the stomach bug that has been going around everywhere, and have been sick for the last three days.  Honestly - having a stomach bug two weeks before starting chemotherapy is quite like a kick in the crotch.  I'm sorry, it just is.  I should be up and eating and enjoying life, and instead I've been down for the count.  Although, if I were to be completely honest, I may say that it was almost nice to have an excuse to be down and out because I wanted to be anyway.

I've been trying my best to get to yoga at least twice a week.  I started to say "and that's helping", but I really don't know if it's helping or not.  Who knows how I would feel if I wasn't?  I'm also going to get a treadmill for my basement, and try my very hardest to get downstairs and exercise for 30 minutes in the morning through the 5 months of chemo.  Everything I'm reading and/or have been told is that if I can maintain some sort of physical exercise throughout chemo that my body will be stronger and will be able to manage it better.  I'll go in with good intentions and hope they come to fruition.

My doctor told me to be sure that I do something every day that I love.  That is very, very hard to do in the winter.  I hate the winter's guts.  What makes me happy is camping, playing at the park, biking with the boys, canoeing, picnicing.....nothing that I can do in the winter.  I typically experience some form of Seasonal Affective Disorder anyway.  Add chemo and cancer, and it's going to be a LONG winter.  But that also means it will be an even better summer than usual.  The other thing I love to do is eat.  My stupid stomach bug took away that joy, and then my "research" on cancer really squashed it (limit sugar! limit fat! no alcohol! limit caffiene!).  I eat well already and need to come to terms that this is something that I may not be able to control.  That's been hard. 

Scott and I took the boys ice skating today with our best friends who have boys the same age-ish.  Scott and I don't ice skate, but Cameron and Elliott honestly took off.  I have never seen Cameron take to something so instantly unless it was a book.  They had those pusher things and both of them just loved it - pure joy.  I think the combination of watching them along with my stomach bug finally going away has helped me break out of the blues a little bit.  Maybe it was also just a matter of time. 

I get my port put in tomorrow.  I'm more nervous about that than I was the lumpectomy.  I think because a surgeon was taking something out of me that shouldn't be there with the lumpectomy, and I was going to be under general anesthesia.  For this procedure a radiologist is putting a tube into an artery that will stay there for many months, so that they can have easy access to poison me.  I mean my cancer.  Either way, I'll be glad when it's over.  Wednesday I have an echo and Friday I have Sesame Street Live.  :)

The plan

Just a quick addendum....I met with the oncologist yesterday.

I will have a port placed in my chest for the chemo sometime in the next week and a half.  I will start chemo on 1/17.  I'll have 12 rounds of chemo in the course of 5 months.  First I'll go in every other week for 8 weeks and then I'll go in every week for 4 weeks.  When that's done I'll do 6-7 weeks of radiation, 5 days a week.

I feel shaky and scared.  She gave me a "number" and I think the intention was to make me feel better about chemo.  It really just ended up scaring me.  The worse part about the whole appointment was her telling me that if I die from this, it's going to be from a distant cancer - somewhere else in my body.  When I asked how we screen for that distant cancer, then answer was we don't.  We have to wait until I'm symptomatic.  That's not what I wanted to hear.  I wanted blood work, tests, other screenings, which she said just don't work.  So she said I have to put my complete faith in this aggressive chemo and that it's killing any and every little micro cancer cell that may be in my body right now. 

Here's to 2013.