Good afternoon all,

I must apologize for having been remiss in updating this blog, as usual.  My July scan was delightfully clean, (and there was much rejoicing.)  Life has gone on since then, things have even been going pretty well. 

I have been wooed away from my current company.  My last day is a few weeks away yet and I have a ton of things to clear up before I leave.  I will be sorry to leave as they have been very good to me, but after 11 years it is time for a change.  I need to get my feet wet in another area of engineering for awhile.  I’ve been doing lighting for so long that I feel like I need to step aside and try something else for a while.  I am not going far, the new firm is only a few miles away.  It is a larger company, but a smaller office.  The projects are smaller and I’ll have a chance to get back into the power side.  I am nervous but excited to do something different for awhile.  I will miss everyone, but we will still be able to get together on occasion.

I went home last week as my Mom was being honored for her Outstanding Volunteer Service by the Community College where she taught for many years.  Mom was always spending extra time there volunteering for the bloodmobile, sponsoring student activities.  When I was in high school she was faculty advisor for the math science club.  I used to go with her to chop wood, (we sold wood to raise money for the club one year,) help work the concession stand at the football and basketball game’s, she would tutor students as well in an effort to get them to pass her classes.  Mom taught biology & microbiology and she was quite good at it.  Her students loved her.  She had to make her lectures entertaining to get her students to listen.  I wasn’t allowed to take her class as she used my brothers and I as examples in her genetics lecture.  I tried to sneak in to hear her lecture but was always chased out.  I did sit in the corridor a few times to listen to her.  She was wonderful.  I love her lecture style.  She used humor to get the students engaged. 

About three weeks ago I had my most recent CT scan.  The week after, I got to see my Oncologist for the results.  Unfortunately he said part of my small bowel(?) was enflamed, which could be ANYTHING, from an infection to gas.  (Sorry Mom & Dad, I didn’t tell you about it because I didn’t want you to worry.)  At this point I’ve decided it is nothing to worry about.  (There is a little part of my brain that is freaking out of course.   I’ve stuffed that part away in a small locked box.) 

They scheduled me for an Upper GI.  I got there shortly after 7:00 Monday morning, it took me a few tries to get to the right place.  The buildings are all connected and it isn’t easy telling what building you are in once you are walking around.  After a few false starts, I finally made it to the correct imaging center in the correct building.  Every time I have a new procedure, I get lost trying to find the right place.

They gave me two gowns to wear so my hiney didn’t flap in the wind.  I bagged my clothes up and got on the X-ray table.  It was kind of cool as the table moves back and forth, up and down and rotates.  I had to drink several cups of a thick, heavy barium solution.  YUCK!  It was very interesting watching the fluid move through my digestive tract.  The nurse and Dr. informed me that it could take all day to get it to move where they needed it to go.  I told them that my body likes to get rid of it quickly.  They were skeptical until my gastrointestinal system got to work, then they made me drink extra barium solution.    I’m still pooping white stuff, which is just disturbing on so many levels!

I got my results back yesterday:  Dr. Pok sent me the following. 

It does not appear to be related to anything cancerous, although they are not sure what it is.  Inflammation for some reason?   I am going to refer you to Dr. Bouhaidar in VCU gastroenterology- he will meet with you and decide if you need the Push Enteroscopy.  

This is the formal result.  Enteritis means inflammation of intestine.  Vasculitis is inflammation of blood vessels.  

btw- congrats on super rapid transit time.  You are cheeseburger to poo in 30 minutes or less!  That is a skill I thought only the wookiee had.  (The wookiee is his buddy and my PT, a really funny guy.)

1.  Segmental regular, smooth fold thickening of the distal duodenum and proximal jejunum in a distribution similar to the recent abdominal CT. Findings can be seen with enteritis, including inflammatory or ischemic enteritis. Additional considerations include an infiltrative process such as eosinophilic enteritis or sequela of chemotherapy. Underlying vasculitis is also possible. Small bowel lymphoma and metastatic melanoma are considered less likely. Further evaluation with push enteroscopy and biopsy would be of benefit. 

2.  Moderate gastroesophageal reflux. Small hiatal hernia and nonobstructing Schatzki's ring.

3.  Mild esophageal dysmotility.

4.  Rapid transit time for barium to reach the right colon at 30 minutes.

I hope to get scheduled this week for the Gastroenterologist.  It would be nice to get it out of the way so I  don’t have to waste any more time worrying. 

I promise to update you all when I see the gastroenterologist. 

Love and hugs for everyone,
blk

Still Cancer Free and Happy about it!

Good news last week!  My last scan is still clean & my blood work finally came back to pre-treatment levels!  Hooray!  It was nice to see my Dr. Pok. 

Speaking of Dr. Pok, he is now famous; https://www.youtube.com/watch?v=498MN-1wqqE&feature=youtu.be  You can see how brilliant he is in this TedxTalk from a week or two back.  He is also a really genuinely nice guy and a great doctor. 

 

Right then, went to my GP yesterday to have my left inner thigh looked at. 

Zoe and I took a trip up to MD to visit a friend over the weekend.  Initially 3 out of 4 dogs got along.  Dodger, an old grumpy lab mix doesn’t like anyone.  Zoe went all submissive upon meeting Dodger & Aylia in hopes of making them feel better about her larger than large presence.  They seemed sort of O.K. in the beginning.  Aylia ignored Zoe and Dodger grumbled like an old man.  Several hours later we were all standing around chatting before heading out to demo the old, then build the new fire pit. 

Apparently there were one too many humans petting Zoe when Melissa’s dog, Aylia, took offense.  Jealousy is a green eyed bitch.  She lunged at Zoe and I stepped in at just the wrong time to get bit.  I now have a 22x15cm bruise on my left inner thigh.  It was quick.  Once she figured out that she bit me, she let go immediately.  I am sporting 3 punctures and a gigantic bruise, along with some impressive swelling.  I’m on antibiotics & icepacks until I heal.  Aylia is up to date on her shots and my tetanus shot was updated only a few years ago so I should be just fine there. 

Zoe did her best to defend me, but I held her back.  Any PT out there should know that playing tug-of-war with a muscular Great Dane should be considered PT.  Holding her back should be as well.  Damn she is strong!  I’m also getting pretty good at slinging a 55 pound bag of dog food around.  Yes, I do believe there is some progress on the PT front. 

Feel free to crack some Sarcasm here folks.  I’m telling a variety of stories to make it sound better - it was a land shark that attacked me in a biker bar in Texas.  You should have seen the fucker when I got done with him.  I cut his sorry ass!  Or maybe it was a group ninja clowns tried to sneak up on me and I had to beat the daylights out of them.  Feel free to submit your favorite stories and we can all have a good laugh.

 

Love and hugs for all!

 

blk

 

 

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