Life after treatment?

Hi all,

I do apologize for not showing my pen on-line of late.  I have been remiss, for that I am sorry.  I have been trying to adjust to life post treatment.  I’ve been told I need to just get over it, (the ‘it’ in this case is cancer.)  Now I won’t mention names, because I love the person who said it, but seriously folks.  Can anyone ever go back to being the same person after having the big C?  Can anyone go back to living the same life after chemo?  In my world the answer is no. 

I’m sorry if this worries anyone, or if you don’t like that answer.  I’d be lying if I said otherwise.  Hell, just saying cancer stirs up an irrational fear in people.  I still remember when no one said the word out loud.  It was whispered for fear that someone might hear in the next room.  My friends & my shrink all agree that I’m just fine.  I’m never going to get over having cancer.  No one does.  Life changes after a diagnosis like that.  I think differently, I act differently, I react differently.  I’m just not the same person I was pre-cancer.  It is what it is folks!  Honestly I think this is a good thing.  I'm more aware of things, not just regarding my health.  I notice things I didn't notice before.  I try so very hard to see things in a more positive light.  I try to maintain a positive outlook in life, and I try to see the good in people more often.  Everyone has moments in life that are difficult.  No one will make it through his life unscathed, no one.  We are all just doing the best we can with what life throws our way.  I am more likely now to take a break and notice the flowers instead of spending the day doing laundry.  My mother will not like that last statement much, but she will appreciate the flowers part. 

Allow me to scream it at the top of my lungs, ‘FUCK CANCER!’  I hate cancer.  I loathe it with every fiber of my being.  I hate how helpless and weak it makes me feel.  I also hate that it makes me feel like a failure.  Somewhere in my mind I feel as if I brought this on myself.  The logical part of my brain says no, but there is that little corner of doubt that says I did this, I’m to blame.  It is completely irrational of course.  I know this, it is still there hovering in the back of my mind, waiting.

My father was recently diagnosed with pancreatic cancer.  A cancer that is incredibly scary.  This is one of those with the highest mortality rates.  The first thing I did was e-mail my oncologist to let him know to add it to my medical history and see if he had any wisdom or advice.  Alas, without more information, there wasn’t much he could say.  I understand he has to be careful.  I understand he doesn’t want to cause undue worry or fear without proper labs & pathology.  That I totally get.

 

My twin, Brian, & Dad.

They look so much alike!

The men in my family are quite handsome.

I even went to the livestrong website and considered signing Dad up for their guidebook & workbook.  I have one and it is great.  Mom asked me to wait to see if he wanted it first.  They also have people you can talk to about your diagnosis.  These folks aren’t just Dr.’s, they are survivors.  They know what you are going through.  It is important to have someone to talk to who gets it, someone who understands the anger and the fear.  Sadly, I'm not sure he would use it.  I love it, Brian would use it as both he & his lovely wife, DJ, are the most organized people in the family.

I researched treatment centers closer to home so Mom & Daddy wouldn’t have to make the trip in to Wichita as it is a long drive.  I know what it is like to have to drive after chemo.  I did it, there were days when that sucked, but I managed it.  I can't imagine driving long distance though.  A few of my fellow patients drove over an hour for treatment.  Thankfully they had someone to bring them and to drive home.  My drive after treatment was a mere 10-15 minutes depending on traffic. 

 

I watched parents bring their children in for treatment.  I watched them leave the room to cry so their kids wouldn’t see.  Someone has to be strong.  I didn’t let my folks see me cry when I was diagnosed or during treatment.  I tried not to let them know how scared I was.  I didn’t want them to worry about me because I was so far away and there wasn’t anything they could do even if they were here.  I didn’t really talk to them about it in those terms.  I told them I was tired, or nauseated, but I tried to be upbeat, or make a joke of it.  Why make them worry needlessly when there isn’t anything they can do to help?  They worry enough just being parents.

I had a call the other day from someone who told me I had to come home NOW, that I shouldn’t wait until he was gone.  I got the call at work.  I understand the panic cancer causes.  I do, but that call was tactless.  This is the same person who did the same thing when I was in high school to let me know my grandmother was senile.  She wasn’t senile, she was losing her memory, but she wasn’t senile.  She was confused and frightened, not senile.   I understand the panic, but when I'm at work, upsetting me is not a great idea.  I'm embarrassed that I let her get to me to the point I was crying.  It isn't easy to maintain respect in the office when you end up in tears due to one tactless person. 

Another person thinks I’m not taking this seriously enough.  These people have no idea how much I understand what Dad is going through.  I know their heart is in the right place, but their execution leaves something to be desired.  Apparently they think I am completely clueless on the whole topic of cancer.  Yeah, I’ve only had it twice, I’m just a dumb fucker.  I don’t mean to be rude or tactless myself, but damn!  What do I have to do to let them know I get it?  I can’t really jump on a plane without getting things sorted here first.  I also have to beg for time off from work.  I used up all of my leave during chemo.  I won’t have any time accrued until at least August.  I’m also still paying the hospital.  Sadly my life is still run by cancer, treatment & various therapies.  I’ll be paying that bill for a while.  Have I mentioned that insurance companies suck?  They do!  While we are at it, Fuck Insurance companies too!  They are another necessary evil.   

Fuck Cancer!

I do want to go home, but I want to go when I can be of use to Mom & Dad.  If I left tonight and got there tomorrow morning, Dad would be pissed!  I don’t want to irritate him further right now.  He already doesn’t feel well.  I’m afraid I would just exacerbate things.  He needs to rest and feel better more than he needs people to hover.  He doesn’t like it when people hover, I understand this completely.  He is and always has been a get things moving kind of person. 

He is going to get through this.  He is going to go home soon.  He is going to be fine, but like me, life isn’t going to be the same.  I know the above statements will piss people off, but it is how I feel.  My motto is prepare for everything, but hope for the best possible outcome.

Adding further irritation, I got the news this morning that another friend is in the hospital battling lung cancer.  It is in her lungs & spine.  There will be further tests to see if it has moved into her brain as well.  I haven’t heard on that front recently though.  One would think that someone who survived breast cancer would be done with all of this shit.  She certainly deserves better than this!  Everyone does.

 

Fuck Cancer and the horse it rode in on!

On an up note, I have a new best friend.  Her name is Zoe and she is beautiful!  She has been with me for a few months now.  I love her smile.

Zoe

 

 

Blessings, silver linings & some pain to go along with

Merry Christmas Everyone!  I hope this missive finds you all happy & healthy.  Did Santa bring you new toys? 

 

This has been a tough year for me, but I still have more than my share of things for which to feel thankful.

 

My Oncologist, Dr. Pok, & the nurses at MCV have been a Godsend.  I miss my nurse, Maria, who moved to work at another hospital.  Not only are these people truly compassionate, but they are funny, quirky & delightfully sarcastic.  I will miss them once this treatment is done.  After a year of immunotherapy I consider them more than friends.  I consider them family.  Don’t think for a moment that I’ll ever forget you!  The women in the chemo lab are amazing.  I’ll be stopping in to visit periodically so you won’t forget me.  Also I’ve expanded my joke repertoire & my knitting has greatly improved over the last year as well.  I’ll get everyone’s hats done eventually.

 

My oncologist also hooked me up with a fabulous PT, Andy.  He is working to break up the scar tissue in my right arm & arm pit from the various surgeries.  Needless to say I am mostly happy to have him working me over.  There are times when I want to smack him when he hits a bit of unhappy tissue near the bone.  I have not yet cried but I have issued a few choice words in his general direction.  Jill, I am quite sure you know what I’m talking about as you’ve had your share of scar tissue to work on.

 

I could not have done this without each and every one of my friends & family.  Your kind words & support have been wonderful.  I feel truly loved for the first time.  Even those of you who are far away make me feel loved.  The support I’ve received via Face Book has been spectacular.  I will never be able to adequately express just how thankful I am to have you all in my life. 

 

The treatment has taught me just how strong a person I am.  Isn’t it funny that it takes something really difficult to explore yourself and come out thinking, “Hey, I’m pretty awesome and stronger than I ever thought possible.”  Going into the treatment, I had no idea what it would entail.  I didn’t lose my hair so I shaved my head instead, and I liked it.  I can honestly say this is the hardest thing I have ever done.  I’ve never felt this sick in my life, nor have I ever felt so much support from friends & family.  This is when you really find out who your friends are.  I know I haven’t been up for much visiting, but that will change in February or March.  As I get my strength back, I’ll be making my rounds to see everyone.

 

This is also when you find out the quality of your co-workers.  I have to say that H&A has the best quality of people with which to work.  Even though my chemo brain makes me have to ask the same question multiple times, everyone has been spectacular & patient with me.  I would like to take a moment to say, “Thank You for your compassion & understanding.”

 

Now that the nice stuff is done I’ll fill you in on what happens when you have a guy working to reduce scar tissue.  Fucking Ow!  Seriously that sentiment doesn’t do justice.  This guy thoroughly enjoys what he does.  He smiles every time I flinch in pain.  Wednesday he tried to scratch behind my left eye by way of my right armpit.  It didn’t just fucking hurt for a little while either.  I could still feel it this morning when I was trying to stretch out my shoulders.  Holy crap on toast!  I may have come close to levitation during that treatment, I can't be sure as I was in pain.  I’m pretty sure he is working to increase my pain threshold by at least triple.  Fine by me, but damn!  Thankfully he almost went easy on my today, no poking around in my armpit.  It still feels like there is a steel ball stuck up in there.

 

Only 14 treatments left!

 

After everything is over next year, I think I’ll move on to taking over the world.

 

I love you all!

Hugs,

blk

Whining

Right then, I’m just not feeling myself today.  After some crazy number of weeks, (44 I think,) of treatment I am feeling somewhat defeated.  How craptastically insane is that?  I have 9ish weeks left.  The fucking light is at the end of the longest damn tunnel in the world.  All I want to do is curl up with my favorite blanket, my dog, & cry.  Only problem with that is that my sweet girl isn’t here anymore to help me feel better.  I’m tired of feeling sick & tired.  My stomach aches constantly, I have absolutely no endurance & I just want to feel normal again.  I want to be able to climb the stairs without being so out of breath by the time I get to the top that I can’t open the damn door.  I am so over feeling weak.  I want food & water to taste like it is supposed to again. 

I know, I was out of the Lexapro for almost a week, & damn!  This really sucks stinky socks.  Now I know why they put me on an antidepressant in the first place.  I picked it up today btw, so I hope to be back to my normal, “FUCK CANCER,” self in a day or three.  In the mean time I am battling the desire to curl up & cry.  It sucks that we don’t have a wellness room at work where I can go release the pressure behind my eyes.  I can’t stop them from leaking, but I can’t totally break down here either.  I work with mostly men, and you know they can’t handle crying of any sort.  They can barely handle half of the shit that gets thrown our way.

They don’t need to see me like this.  Hell, I don’t need to see me like this.  Yuck!  Still, I know the end is near, I just have to buck up for another 2.5 months.  I can do this, I can.  I need to finish this so I never have to go through any of it again.  In the mean time, I’m going to cry for awhile, and maybe whine a little more. 

Side Effects Update

Thursday:

Have I told you lately that I really don’t like IV’s?  Well, I’ve had two this week so far, (not as bad as the 3+/week in January.)  My ride in the MRI machine was nothing if not loud and shaky.  Thank heaven they gave me a free pair of earplugs.  Hmmm, they might be included when I get the bill.  Dang, oh well, earplugs are cheap right?  Right then, the ride.  So, I suspect I was in the machine for about 20 minutes total with the ka-chunk-ka-chunk-ka-chunking and the shake-shake-shaking.  The darn thing would pause for a minute and start up again and I’d twitch again.  It was a bit uncomfortable in that tube, but I closed my eyes and tried to imagine relaxing in a lovely meadow.  It didn’t work, but I kept trying..  The contrast for my second ride was friggen cold, I think they had just taken it out of the refrigerator.  I am happy to report that I got a pre-warmed blanket for the ride.  That was the best part of any MRI as that room has to be kept really cold to keep the machine from overheating.

After my ride in the very loud & shaky machine the nurse removed my IV, (Yay!) and the room didn’t completely spin when I stood up.  I’m taking that as a very good sign.  Getting up too quickly still makes me woozy so I try to move slowly while the earth evens out beneath my feet.  It is getting better and there is no headache today.  Woo-Hooo! 

Not a long missive, but there you go.  More info will be forthcoming when I get the news from the Medical College of VA this afternoon.

Friday after work, but before treatment, I went to a barber to have my head shaved, like a real shave.  I had no idea how luxurious getting shaved was.  I got to pick out the shaving cream by scent.  The gentleman warmed it and applied it to my head.  Man that felt luscious, then he applied a hot towel, again wow!  Then after a few minutes to let my head soak in the goodness he put on some more shaving cream and shaved my head.  Talk about sexy!  I have a beautiful cranium.  Now I know how my brother’s feel, and it is good!

This was the best weekend I’ve had in months!  I felt so good I grabbed my camera and went out into the world.  I didn’t manage to take any pictures, but I did have some fun.  I had breakfast Saturday morning – Bacon waffles = yum!  Then I went shopping with my very good friend Mary Bergman.  She has an eye for jewelry in pawn shops.  I splurged and got myself a ruby necklace.  I probably spent too much money, but I love it!  Now I just need a bracelet to match.  Next time.

Saturday I went and saw my friend Karen & have a beer.  God I’ve missed her!  I even managed to get some puppy loving in.  What a joy to be out in the world.  Then I went home and relaxed in a nice warm tub with some salts & heavenly scents before bed. 

I hope your weekend was as nice as mine.  I am going to savor it as I'll probably be back on treatment tonight.  It'll be tough, but nothing worthwhile is ever easy.

love and hugs to all!

blk

More side effects? I Decline, thankyouverymuch.

A short update for your Wednesday.  I know I’ve been remiss in my updates.  I hope to get on that again soon, like now actually.  My brain isn’t firing on all cylinders today so I thought I’d ramble on e-mail for a bit.  Maybe I can get it to wake up and fire up a few cylinders in the process.

I do love my Dr. & his sense of humor.  We had a lovely exchange Monday morning.  His sense of humor only goes so far though.  I am scheduled for an MRI of my brain tomorrow morning.  I had a whopper of a headache yesterday, it kept me home from work.  That got them worrying along with the dizzy spells, hence the MRI.  I’ll have yet more proof that I do in fact have a brain – Yay!  Though it has been confirmed in several scans thus far, it is always nice to have confirmed again, and again. 

I had a few really good weeks, meaning low side effects.  Then over the weekend I started having dizzy spells.  This isn’t normal for me unless I have some kind of inner ear thing going on, so I mentioned it to my Dr.  They say laughter is the best medicine, I tend to agree with that notion, thankfully so do my medical providers.  We try to joke when we meet.  Monday they said I looked pale so they gave me a Liter of fluids while I waited for my treatment.  I tried to drink water yesterday, I probably still didn’t drink enough.  Hell, I was in the bathroom half of the day so maybe I did get enough. 

Monday’s treatment was a little rough.  I hadn’t had the full gambit of side effects since May so it was a bit of a surprise when the chills started.  The fever hit around 11:30 or so but it only went as high as 101.4^oF.  I texted in my temp anyway.  My nurse likes to get texts from me when exciting things happen.

Work has been incredibly supportive of my treatment thus far, thank heaven!  They are working to make sure I don’t do overtime.  Honestly I don’t think I’ve put in a full 40 in months.  I try to work extra on Tuesday & Thursdays to make up some of the time, but my energy hasn’t been up enough to do so.  I imagine I’ll be using the rest of my vacation time to finish out treatment.  It’ll suck, but that’s life.  Here’s hoping I won’t have any more crazy side effects showing up for the next 5.5 months.  I’m going to take my lesson in all of this as: don’t get cancer – again!

Other than that, I think I’m doing pretty well.  I’m still sporting no hair, though it needs trimmed.  I’ve spent the last few weeks feeling incredibly lazy and it is about 3/16” long.  I still look foxy fine!  Yeah, that might be a bit of an over statement, but I feel pretty good about my lack of hair.  I managed to find a nice & inexpensive pair of big gold hoop earrings to go with my lack of hair.  Andrea sent me the best soft fuzzy brown hat on the planet.  It kind of makes me look like I have hair.  Maybe I’ll get a photo to include in this missive so you can see how awesome I look.  Feel free to give a good chuckle. 

First time bald @ Irish festival with the Bergman family.  You know you have an awesome best friend when she shave’s her head with you.  I think we look fabulous!

I love this photo & think it needs to go on my wall.  Mary – Thoughts?  That was an awesome day! 

This is with a smidgen of hair.  I’m not usually photogenic so forgive the face.  Yes, I do need to trim my hair back down to the scalp.  I really like the no hair look & it is so freakin easy.  A small bottle of shampoo lasts & lasts.  Yes, I need a trim.

Further updates since I wrote the above missive..  I was denied treatment today as they are concerned about toxicity.  They want to see what is up with the MRI tomorrow, then we will resume treatment Friday, I hope.  This means Friday’s treatment will be full of SUCK!  Having 3 days off can be painful.  I’m hoping it won’t be as painful as the 5 days off I had in May or the 5 days I'll have off for Labor Day.  I tried to convince them to continue, but they said no.  The dizzy thing was worrisome.  My other nurse, Jane, said she would call me tomorrow, or have Dr. Pok call me tomorrow.  Someone will call me tomorrow.

Ah well!  Such is life I suppose.  Now for a nap!

Be well my friends,
blk

Grief

I don’t use my front door often.  Sometimes packages will sit there for a few days without my  noticing them.  I should really check daily, but life intervenes and I am easily distracted.  I managed to notice it, brought it in, and wondered what I had ordered from Amazon, I hadn’t ordered anything, had I?  It was a package from a former high school classmate who read on FaceBook that I had just put down my dog, Abby.  Abby was my best girl.  Anyone who has beloved pets knows that there is a special bond between a dog & his person.  No one shows love like a dog.  They are happy to see you every day, no matter what.  They openly show their love for us, they hold nothing back.  They don’t judge, they only love.  Animals are so much more loyal than fickle humans.  We are flawed in that respect.  Animals are honest to a fault.

Anyway, Shaye sent me the most amazing book, “The last will & testament of an extremely distinguished dog, by Eugene O’Niell.”  It took me time to read it as it makes me really miss my big girl.  I read a bit & cry a little.  I am sure you already know that I am a long time sap.  This book says so eloquently what animals continually show us.  We have much to learn about unconditional love and we should take the time to learn these very important things in life from them.  Things are just things.  What is important is your relationships we have with one another.  They are patient teachers, even with those of us who are stubborn, or a little slow.  Anyone who has lost a beloved pet needs to read this book.  We need to spread love & faith in the world.

I so miss my girl, but hesitate to get another dog any time soon.  It would be unfair of me to replace my girl when I am still grieving her absence.  Also, while undergoing treatment it would be unfair to get a dog when I am so tired I can’t walk him or her.  It wouldn’t be fair of me to adopt another dog at this time.  I’ll wait until my heart doesn’t hurt so much.  I’d also hate to compare a new pup to my wonderful girl.

I brought my girl home Monday last week.  In the book there is a page that says; “Whenever you visit my grave, say to yourselves with regret but also with happiness in your hearts at the remembrance of my long, happy life with you; ‘Here lies one who loved us and whom we loved.”  When I finally find that final resting place for her, I will remember this book.  Some day I'll adopt another dog.  I am sure, much like Abby, he or she will find me.  It will take time, but I will adopt again.

Thank you Shaye!  I will never realize the depth of your grief for your daughter.  I can't pretend to know what that is like.  I would never presume to try.  You gave me a comfort in my grief with your kindness.  For that I am grateful.  Please let me know if I can do the same for you.  I miss my girl every day.

When we grieve those we love, we carry them with us always.  We bring the love they gave us into our hearts, it is right that we should spread that love to others.

Love & many, many Hugs,

blk

Memorial Day

First off I’d like to apologize for not updating anyone for a long while.  I’ve been battling nausea quite a bit.  I have yet to lose the contents of my stomach, so that is good.  Zofran dulls it a bit and the Compazine helps me get to sleep when it is keeping me up, but nothing completely kills it, & they have their side effects as well.  Unfortunately there are days when it is pretty bad and neither drug really touches it.  Sundays are usually the best day as I’ve been off of the treatment for an extra day, but I am hoping today is great too.   No Treatment on Memorial Day, the clinic is closed.  This of course means that Wednesday’s treatment is going to be hard on me. 

In February I took a 2 week break from treatment.  When the maintenance phase started up, it started with a vengeance.  On the up side, I lost about 3 pounds overnight shivering, but I’d prefer not to have a repeat of that horrible night.  I haven’t had a full 5 days off since February.  I am hopeful that it isn’t as bad as I fear, but I’ll still prepare for it being awful. 

I forgot that I haven’t had coffee since Friday = no caffeine.  It took me a bit to remember why I had a headache.  I finally brewed a pot of tea and it is finally starting to go away.  My head is cold so I need to go put on my hat.  Today’s hat is a gorgeous mottled brown from my friend Andrea.  It is lovely & soft and actually fits my little head.  I also kind of look like I have hair when wearing it.  I’ll have to switch to a sun hat as I’ll be outside this afternoon. 

So, today I’m heading off to a friend’s house for some grilling goodness.  I’m in charge of salad & watermelon.  I will try to select a good one.  Watermelon picking is not high on my list of talents though.  Wish me luck.  I am going to try something different with the salad.  In November I put up jars of fire cider.  Today I am going to strain them, they should have been strained and sealed in January, to try in vinaigrette. 

For those who do not know what fire cider is; you take an onion, chop it up & put it in a mason jar, to this you’ll add an entire head of chopped garlic, 3 tablespoons ground turmeric, the zest & juice of an orange, ¼ C. chopped fresh horseradish and a few chili peppers chopped.  Top it all off with cider vinegar, put a lid on & put it in a cabinet to age.  You’ll want to pull it out once a week & shake it up just a bit, no need to go crazy.  You just want to mix it a little so all of the flavor & healthy goodness comes out of the ingredients.  After 8 weeks or so, strain off the solids and put it back in your jar.  Not only is this yummy if you are a spicy individual, but it is really good for you too!  Who says healthy has to be tasteless?

I’ll do a simple vinaigrette with Olive Oil, salt & Pepper.  I am confident this will be loved by the adults and reviled by the children.  They’ll get their own boring salad dressing.  Ah well, I can’t please everyone.  Though in supplication, I did make hibiscus tea which they love.  They especially love it with a strawberry cut up to make it festive.  I’m calling it kid friendly sangria!

Well, I should get going, much to do!  I hope everyone has a happy Memorial Day.  Don't forget to hug a soldier and thank them for protecting our way of life.  If you are driving far, please drive safely.  I love you and would miss you if you were gone.

Love & Hugs for everyone!
blk