Sunday, January 23, 2011

I need to get my period and call it a day.

Photo by Parris Blue Productions
 Where to begin......let's start with today and work backwards shall we?  Today I am on a clear liquid diet and will be until after my oh-so-sought-after colonoscopy tomorrow at 2:30pm.  I know, you are jealous.  I have had them before (I have more GI problems than cancer problems) and HATE the prep.  I usually have pretty funky #2 whatnots anyway, but this is ridiculous, not to mention I am starving.  If only this was done during chemo when I had no appetite, now that I am getting it back, this is torture.  One time I threatened to break up with Scott when he didn't get me chicken nuggets........a girl needs food.  So clear liquids it is, I figured wine is a clear liquid so I had a glass earlier, which, with no food in my stomach, made me fall asleep in about 5 minutes-then I woke up and began this "prep".  I talked to Scott at work and it sounded like he was talking with food in his mouth....I was jealous and got off the phone.  So this continues until tomorrow afternoon when the cherry is added to the top of the sundae and my GI doc puts a camera in my tukas...

***warning: "female" issues are discussed below***

My mock-PMS symptoms got worse, and now seem to be better--if only I could eat a celebration cupcake.  Have you ever met someone and the first thing you thought was "Whelp, I am not going to like her."?  Enter my new OBGYN--she has great references, seems to be doing well and is probably a nice person.  But I have been pretty crazy this past week and she seems to enjoy the Botox.  I don't mind pap smears, I actually like vaginas a lot and want to be sure mine is in tip-top shape (since my boobs went AWOL, I want to keep my ovaries in line).  Also, there is a risk of developing ovarian cancer when taking the estrogen blocking pill that I will begin in August, after I complete my Herceptin infusions--it is a small percentage.  Also, because my tumors were estrogen positive I am at a higher risk for developing ovarian cancer anyway--if I wasn't in the 'childbearing' age group it would be recommended that I have them removed, which I may still choose to do at another time.  Anyway, I needed an exam and a primary doc so I went to see her.  I had 3 mini-meltdowns of crying and not being able to catch my breath during my hour visit--so I am sure I came off as a crazy person (I did tell her I was a therapist...not sure if that hurt or helped my situation). 

After I was on the table, feet in the stirrups she asks when my last chemo was.  Then she says that she isn't going to do an exam because in her experience when they are done so close to having finished chemo the results come back as needing more tests and it is because the cervical cells turn over.....which I strongly feel could have been told to me prior to the stirrups.  Then she peeks over the paper skirt I was wearing and tells me "You are going to think I am crazy" (well at least then we would be in the same boat) "but when you get out of the shower I want you to insert Crisco in your vagina and on your inner labias"..............................yep.  Is that too much info? Does that make you uncomfortable? Well think how I felt.  So as a result of chemo (and the menopausal state I am currently in) the vagina does some funky stuff and apparently the Crisco will help bring it around (like mayo for your hair?).  But I am not making cookies down there, so I am going to pass.....for now.

Then, while I was in a fit of tears, she suggests I start an anti-depressant/anxiety medication.  Not really in the place to refuse, as I was wiping my snotty nose on my sweatshirt sleeve because I couldn't find the damn kleenex I had in my hand earlier and had rubbed into shreds.  She stated that it has also been shown to decrease hot flashes (and the panicky feeling I get at night when I wake up with one).  I am aware that many of the symptoms I have experienced off and on are similar to PTSD, which makes some sense considering cancer and treatment was both a trauma to my mind and body....and since my hormones are all crazy, something that may help even them out (or at least trick my brain into thinking they are) may be in order.  I am going to try it for 30 days and see what happens---if I stop breaking into fits of tears, fall asleep before 4:30am or have the energy to work out (once my body decides to cooperate)--or even 1 out of 3I will be happy.  I can worry about getting back to my natural rhythm when my hormones kick in and I start a cycle again.

I will continue to see the Crisco Queen and see how it goes---for one reason: she told me that she is amazed how oncologists don't tell patients what a hard road it can be after chemo.  How the shock to your systems is tremendous, and comes out of a no where because you think it is all behind you, afterall you survived chemo.  How she understands the amount of pressure that I put on myself to get back to "normal". 

Wednesday, January 19, 2011

push to start.

Monday I had a GI appointment and ended up having an endoscopy the same afternoon--come to find out that I have a hiatus hernia (where my stomach goes into my esophagus)--that can explain some of the discomfort I am having in my chest. Next Monday I go for my colonoscopy to try and get to the bottom of the other issues.....

Today I woke up on the wrong side of something.  I wasn't just sad when I woke up, I already felt hurt.  And I had a great night on Monday night...........despite the endoscopy I attended a wonderful MLK Celebration at Peace Community Center and then Scott and I went to the Tacoma Comedy Club and laughed our asses off.  But this morning..............whole other person wearing my pjs.

I am hoping that it is PMS, some type of PMS (even though I don't have the cycle that usually coincides with these emotions)...but maybe I am on the right track?  I was told by the lady styling my wig today that coming off chemo and the steroids is like coming off heroin--that many times the detox after the chemo is the worst (I am not saying this is the worst, my hospitalizations were the worst but,)............and I was like WHY DIDN'T ANYONE ELSE TELL ME THIS SHIT.  Here I have been worrying and thinking my body was breaking, and here is this gentle (yet slightly eccentric) woman saying her daughter was going through the same thing and that no one told them that either, it breaks my heart.  I have been fighting with myself because I felt like my body wasn't doing something was rebelling against me....first cancer, now recovery...................but the more research I do and people I talk to, the more normal it becomes.

One thing for sure, I will address it in my book.

My brain is running a hundred miles an hour right now, at 3:30 in the morning.  I took my ativan with no result, I took my pain medication for the shooting pain in my right leg and my numb and achy left foot--but I think my panic attack has override everything so I am a big ball of crazy--of tears and worry and confusion.  I am sick to my stomach, the feeling I had when I was first diagnosed and would lay in bed, even holding Scott's hand while he sleeps, my eyes wide open staring up at the ceiling tears streaming down my face, a lump in my throat and weight pushing me into the bed--I feel so alone.  I know this is one of the 'dips' you have after a crisis and I am working your way up....

Healing from my diagnosis, surgery and chemo has been slow, it has been scary, and it has shook my foundation.  My brain is starting to pick up and I am making lists and lists of things I need to do, people to call, steps to take--but my body is too slow and it can't play catch up.  This is the definition of frustration.

Today I was looking for clothes to wear and had a melt down because I only have 1 pair of pants that are comfy, but they are getting too big and the next size down I have is still too tight.  My boobs are a bit square so certain shirts don't look well and I can't wear a bra because the strap sits right on my port which makes it very uncomfortable. Scott and I were going to head out to do some errands--I told him I wasn't going anywhere, went into the bathroom, locked the door, sat on the toilet (seat down of  course) and broke into a fit of washed all my make-up off...that just made me cry more.  I was a hot mess that didn't have clothes to wear and I just felt overwhelmed by the physical person I am now and how frustrating it is to feel trapped in a body you don't recognize and due to physical pain and other limitations at this time I can't do as much as I would like to change it.

I feel powerless.

I felt powerless when I was diagnosed.

I refuse to feel powerless in my healing process.

Friday, January 14, 2011

Uncover. Discover. Discard.

My crazy makes me look even sicker
I know it has been awhile since I wrote...but good news! I wasn't in the hospital, the ER, or sick as hell...........I was just busy and every time I had the urge to blog I was already in bed........and it takes a lot for me to get my joints working again once I have been laying in bed for awhile so I would just promise myself I would blog in the morning.......we all know that didn't happen.  But today I remembered before I went to bed, so here it goes.

I had an appointment with a nutritionist on Wednesday.  I met with her prior to starting chemo too--she is pretty splendid and a straight shooter.  Prior to chemo we discussed how there are many days when my stomach hurts so bad I can't sit upright, my bowels are like swinging saloon doors (think about it) and even after having my gall bladder there are days when I have to go the ER to get some pain meds because there is nothing that works to take away the pain and let me get some sleep. Anyway....that still happens and she validated my concerns (once again) and it is great to hear it from a professional.  After my appointment with her I was fired up, ready to get going on this whole wellness whatnot---so I made some more appointments that I had been putting off as a result of not feeling well and started to get my shit together.  Since then (yes I know it is only Friday--small victories!). I have been working on reframing things; an example--food as medicine. We will see how it goes.
food as medicine

my other "medicine"

She also suggested that the pain that burns in my ankles and shoots through my calves is a form of neuropathy--which is also why it comes and goes..........swell.  I am hoping that more acupuncture and the continuing of pain medications, and an increase in my Omega-3s will help---I will keep you posted.  But until it works I will continue to be plagued by days of not being able to make many more movements other than from the bed to the couch, I will wake up in tremendous shooting pain from my feet to my knees, my ankles will burn, my feet will be swollen, I will retain water and some days just be plain miserable.........until it stops I will do my best to suck it up and put one foot in front of the other and so on.  Life has been worse, much worse....
My 1st Herceptin only infusion!

Money is scary.  Money may not be able to buy happiness but it pays bills---and when one half of your partnership is unable to work (me), and is spending tons of money (medical bills, etc...) and it is a new year (which means we have to start from the top of  our annual co-pay....).  I feel guilty, so guilty I cry a lot.  Obviously I didn't chose to have cancer, I wouldn't wish this on anyone (as I am writing I am getting a hot flash--which happens now when I am sad, happy, tired, or just sitting perfectly still) but I do, and cancer is very expensive.  I wish I felt well enough to go back to work, but my health is currently too unreliable for me to be a reliable employee--I am hoping for sometime next month to go back part-time.......but who knows.  As a result we are forced to look at a reality where bills may not be the easiest to pay.......a place where many people have been as a result of the recession. 

our backyard with the "winter storm 2011"

Lucy enjoys the snow

Scott and I have moved from a place of worrying about my health and arming ourselves against cancer to worrying about bills.  Scott stresses silently about it--he doesn't want to make me worry.  I cry hysterically and wish I could will myself healthy.  If I could only have a normal 8 hour day, if I could fall asleep before 4am, if I could be reliable and be able to walk on a regular basis, if, if, if.  "Sounds like a what if to me" (my mom said that a lot during my childhood)--the truth is I can't. The truth is I am far from healthy. The truth is I need to heal.  The truth is I need to continue to nurture myself until a routine emerges.  The truth hurts, but it's what I am workin with and healing day by day.

This is where resiliency comes in. Where rolling with the punches takes on a whole new meaning. We are going to hunker down and get through it--just like we did when I was diagnosed--money isn't everything.  We have been blessed with such amazing friends and family and the monetary support and fundraising is unbelievable.  We recently received monetary support from Pipkin Construction where my dad worked before he passed away unexpectedly from a stroke.  The employees there have been amazing to my dad and to our family after he passed.  The recent support was very unexpected and caught us off guard--it lifted a weight off Scott and I's shoulders and we were able to breathe a little easier.  I am still in awe of the love people share and the many hands I have held throughout this fight....

Without each of  you, I would have had to try and work throughout treatment (my ER visits and hospitalizations would have made that impossible)--my entire spirit during treatment would have been different, I would have felt defeated before I even began......  But you all held me up, in spirit, financially, and in positivity.  We will take that into this new year and continue to feel blessed that because of you, we were given the space and opportunity to fight cancer with our entire selves.  Thank you.

Monday, January 10, 2011

I remember when...

I remember when…

-I thought 30 was old (now I will be happy to see 30, or any birthday)

- snowflakes were magic (still do)

-my dad could fix anything (really could have used you for the cancer fixin’ dad, miss you with my whole heart)

-boys were gross (let’s face it, that didn’t last very long)

-I could drink without a headache (….definitely not anymore)

-celebrations were for life changing events (now every day is a positive change and requires celebration)

-cancer was unfamiliar (we are intimate now)

-life had a path and I was staying on it (learning to lean into the curve and take it for what it’s worth)

-things were easy

-growing old was scary (now it is a blessing)

-my toes were ‘little piggies’ and imagination made everything magic

-Santa was real

-life was just a game…………you know the game of life—and I was a pink stick figure with no arms or legs

--in the ‘game of life’, having children was as easy as picking a card—no frozen embryos or tumor loving estrogen found in that box….

--growing old together was set in stone

--doing laundry was a chore (not something I wish I could do)

--my breasts were too small………but at least they were my breasts

--I called myself fat (with no stretch mark to be seen, how skewed the love for my body was then)

--I dreaded school because I had a zit on my face (sad but true)

--I was lost………..(still working my way to being found, and centered, and giving as much love to myself that I do to others)

--grown-ups were so smart and had their shit together, it looked easy

--doctors knew everything….

I remember my life before cancer, a distant memory of something that once was............  Whew, "I should be crying but I just can't let it go."  No matter how many times I tell myself that it will get better, it just hasn't sunk in yet.  Being alive is hard work, good thing I have some great boxing gloves.....

Wednesday, January 5, 2011

"how do you feel?" Alive.

Today marks the longest time I have gone without chemo.  Due to an infection, I had one, 4 week break (instead of 3), but that was it. So today marks 4 weeks since my last chemo..............and I am done. So the only place I have to go from here is up, way up--and boy am I ready.  I have cooked dinner the past 2 days, also the first meals I have cooked since I began chemo, Scott is loving it--and I am enjoying getting to do 'normal' things that at one time I wouldn't even give a second thought, just part of a routine. But my routine was taken away from me, I now make to-do lists that consists of small victories, and just a few, for each day and then celebrate being able to do them.  Examples include: making dinner, doing a load of laundry and folding it (then the next day put away the laundry), not taking a nap, dusting the house---yep, chores have turned into celebrations---think about that the next time you vacuum the carpet, something I still can't do....

Last night we had family game night at our house and I cooked dinner for 5--Scott, myself,  Kristi, Kerri and Nick (Kristi's fiance).  I laughed so hard I cried--and we aren't talking a tear here and there, we are talking flooding tears down my face, kleenex after kleenex, it would subside and then one of my sisters would begin to laugh and I would begin to giggle all over again.  People don't laugh enough, I don't remember the last time I laughed like that (and I know I have never cried that much and laughed)--some of the chemo fog has lifted, I can get jokes and feel joy, I can laugh and cry at the same time, I can and will survive.

I also have been working my way through the stacks of magazines that have piled up since I began chemo.  I read an article about a family that has no garbage, none.  It talked about being minimalists and lessening your ties to material possessions.  I don't know if I would say that I am "tied" to material possessions, but I have a lot of shit.  But did any of my "things" help me during my diagnosis and chemo? No. Did the clothes in my closet drive me to the ER, sit for countless hours by my hospital bed? No. Make funny cancer jokes to ease other people into feeling comfortable around me? I don't think so.  It takes dear ones in your life to do that: friends, family, loved ones, and people you have never met sending positive energy your way.  Sweatpants (or Scott's pj pants), scarves and hats to keep my head warm, baby powder, butt paste, Gatorade and meds along with my family and friends stirring the pot sustained me--not my jewelery box.

Love is comfort and unconditional love, it is an enduring quality that comes in many forms. When your loved one keeps you company while you are pooping and throwing up at the same time (come on, we have all been there), holds your hand when you look like a bald, pale faced, walking zombie wearing yellow crocs, polka-dot socks, mens XL sweatpants (that you have slept in for 3 days), a fuck cancer t-shirt and a blanket as a coat with a throw-up bag in one hand and butt paste and baby powder ready to go in her purse, or carry her purse (Scott looks great with one)--endless hours of hospital stays, uncomfortable sleeping in a crazy "bed chair" or floor, and mindless ER waiting; being active support when I turned into a crying pain riddled ball of fear and refused to go to the hospital, then bring my stubborn ass in anyway--love is crazy, and hopefully blind because throwing up and pooping is never a good picture. Love keeps me going, but my TV keeps me sane. I know---awful right? Like a child who is "babysat by the TV" (which I completely disagree with) but in my case, perfect fit.  It saved me from smothering Scott "I can fall asleep in less than 5 minutes" Barkley in his sleep and allowed me to have light and sound to break up the quiet of darkness.  The darkness where worries and fear would overwhelm my body and scenario after scenario would play in my head, where tears were unstoppable and fear make it hard to breathe--where I felt the most alone, even though my partner in life was laying right next to me.

I couldn't concentrate enough to read with chemo brain so TV was my other option--I could escape the loneliness of darkness and jump into any movie or TV show--allowing Scott to get much needed rest (he can sleep through anything) and not me waking him up to keep me company.  He was taking care of me and working full-time--he deserved so much more, but at the time all I could do was give him the space to sleep.  I was safe, he was there if I needed him, but he could sleep undisturbed.

So if I wasn't blogging through my tears, I was mindlessly (very important) watching TV--so take away everything else but leave my TV and Netflix on-demand as my vices (keep booze and other crap, even the Skittles) but until I can fall asleep before 4am and when my hot flashes stop feeling like panic attacks, my TV is husband #2--my partner in keeping the darkness at bay.

"Hey! I'm watching that!"

Sunday, January 2, 2011

don't be sorry your darkness is gone.

we saw this "holiday" decoration on our way back to Tacoma--turned around so we could take a picture
 Well 'baby new year' you have some competition----I may be 27 but I am bald and cute and really, really looking forward to 2011.  I don't think Scott and I have celebrated a New Years Eve together--he always has to work and the one time we were together he was taking care of me because I had the flu.  On New Years Eve we celebrated a lot of things--most of all that as of now, I won't have any chemo in 2011, so it already kicks the hell out of 2010!  We went to the 'germiest' place I could think of (a casino) where I celebrated being able to be around that many people and not having to wear a mask!!!!!  I no longer feel like a hermit, big hug 2011.

Great Christmas 2010
When 2010 started I couldn't have imagined how my life would change, so quickly and so drastically.  Cancer hasn't just changed my life, it has changed the lives of those in my life.  It is a burden and a blessing, and an occasional flood of worry.  When I was stuck in my cancer bubble (mostly due to chemo side effects and complications) life went on--people worked, babies were born, people got married, the sun rose and set, people passed away and people were diagnosed with cancer.  As I emerge from my chemo fog I am faced with my new self (new body) and a new year.  Cancer has taken a lot from me and given a burden to friends and loved ones who worry about me--but I really like who I am now, coming out on the other side of cancer.  I am a survivor.

Winter wonderland--mom's for Christmas
Though I have been terribly sick, in miserable amounts of pain, and bitched and moaned, I am still here.  When you are forced to look at the possibility your life could end you gain an appreciation for what your life is.  That doesn't mean that everything will be kittens and rainbows, things still happen and you don't have to have a rosy glow and a big ass smile on your face when things get shitty--but it means you are happy as hell that you are around, whether things are good or bad.

Greenaway Girls Christmas 2010
I celebrate small victories now: getting out a bed, taking a shower, keeping down a meal, or making it an entire day without a nap....I deserve a cupcake or two.  Life can get serious really quickly, which is why you need to learn to laugh and enjoy life while you got it.

Me & Marcie--holiday visit

Me, Tasia & Teilani--another wonderful holiday visit
My 'small' appreciation list:
-still being able to see my feet (despite the steroid induced large belly I have to battle now that I am post chemo)
-the weird baby-fuzz (or forest fire aftermath) looking hair I have on my head....which is now even falling out to make room for new hair
-netflix on demand that keeps me company when I can't sleep
-being able to take a shower (and dance a little)
-staying out of the ER for longer than a week
-the great finger nails I have grown during chemo (thank you supplements!!!!)
-being able to stay awake until Scott gets off work
-being able to cook a frozen pizza without having to sit down
-Monday movies with my hubby
-not throwing up on a regular basis or feeling sick to my stomach
-feeling moderately hungry on a more regular basis
-humor and 4 letter words
-cobb salad
---And much more than 'small'--I appreciate everyone who has given me support and encouragement through what has been one of the most shocking and heartbreaking experiences of my life--without the support, this year would be starting on a much different note

Greenaway Girls, New Years Eve---welcome 2011!!!
I have done lots of soul searching and feel settled with the cards I was dealt.  2010 beat the hell out of me, there is no doubt about that.  So as I sit on my couch, this 2nd day of 2011, I pat myself on the back because I haven't had to take a nap today and more than likely will be awake when Scott gets home from work--"did someone say celebration cupcake?"