Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts

Friday, August 19, 2016

It's in the Production phase!

Hello! It's been a while, that's for sure. I've been working diligently editing my book, Midnight Playground Where the Soul Plays. It has taken me almost as long to edit it as it did to write it. But I have to say, it's really good.  The feedback from my beta-readers has been amazing and encouraging.

I sent the final draft and the cover artwork to the publisher two days ago.  Now I'm working on creating the social media presence for my book and developing the brand, Simone M Richards - author.  I'm learning TONS!  Eventually I will be migrating the Minivan Philosopher over to Simone's blog and website.  You will be notified when that happens.

It seems very surreal. The book could be available as soon as Christmas and as late at March.  Either way, I know that when it's ready it will be the right time for me. I've had wonderful support throughout the whole process from my family, my friends and my editor.  His feedback is immeasurable!  He saved the world from my first draft, ha ha ha!

I'm excited to get this underway and then head back to my keyboard and my office/study at home.  I've treated myself to an upstairs study. I kicked the Rockstar to the basement and moved the Sage to another room so I could have my own library/office/study.  I feel like a proper grownup now.  The Rockstar protested initially but I think he kind of likes his mini apartment in the basement.  Of course, I have to remind myself when I go down there to get to the laundry room, that the putrid smell is of his soccer cleats and not a dead animal.  He'll be off to college in twelve months. I'll miss him but not that smell.

Anyway, I apologize that I've been a bit neglectful to you here at Minivan Philosopher and wanted to update you. It's exciting times for me and pretty much everyone connected to me.

I saw this on a wooden sign at a store in Chicago recently.
She believe she could, so she did

Yep, you're right. I bought it.

Oh and it's been three years since my surgery and I'm still cancer-free!!!!


The Ferris Wheel in Seattle!  Yeah, I've been vacationing a bit as well as writing and editing. I'll post pics from our absolutely beautiful hikes in Oregon and Seattle, Washington soon.
Cheers!

Tuesday, January 12, 2016

My new reality is around the corner

Yeah! I did it. Finished the book. Been revising and editing for what seems like ages now. I've had three rounds of beta-readers and have absorbed all they suggested. Only one person didn't like it; but she still had valid comments. Now I'm finalizing the artwork, prepping the website, filling out paperwork, drawing up intellectual property contracts and generally feeling giddy about the future. It's really happening. My intention to live my life as a published author is only a few months away. It's going to be so much fun.

In between book stuff, I've been looking for a car for my Rockstar, working at my suddenly politically sensitive and busy "real job", managing to stay sane during club soccer season, doing lots of yoga (one year in so far and my body has really changed and it's no longer in constant pain -big smiles here!!), dieting and down 40 pounds since August...working on last 20. Love my life.

In the midst of all my wonderful happiness though are reminders that life is short and so unfair. I've lost two friends in the last six weeks to different medical issues: heart attack and colon cancer (yikes that's close to home!). Both men left behind kids and families that dearly loved them and a community that misses them tremendously. Both were musicians and when I heard of David Bowie's death today, I visualized them all making heavenly music together and it made me happy.

Love fully, love richly, love now
~the Philosopher

Monday, July 20, 2015

Two years hence...

Wow! I went on vacation to the lake house & didn't blog once! What does that mean? And the two-year anniversary of my cancer diagnosis was last week & I didn't write  about that either! What does this say about me & where I am right now in my life? Should I be concerned?

I don't think so. I'm very busy writing & editing my first book that I'm publishing hopefully around valentines day. I'm dealing with a lot on that project which will explain the blogging deficit. But the cancer thing, that is weird especially since my quarterly blood test is Wednesday and I'm nervous as usual. Can't sleep well & get the night sweats frequently now. I'm hoping it's only menopause (early onset, chemo-induced you know)... I'll know more Wednesday. Until then, I'll keep busy moving forward with life. I won't make mountains out of a mole hill, at least not this mole hill.

Cheers xx
-the Philosopher

Update: Good visit with oncologist.  All blood tests came back great.  My CEA levels are 1.1 lowest in a year (not that 1.3 and 1.4 are very high mind you especially when anything under 5 is considered normal).  They think the pain I'm feeling in my upper left abdomen is merely functional and related to the healing process from the colon resection surgery from almost two years ago.  In addition, I don't have to go back until January.  I am now on the six-month rotation instead of every three months... NICE!!!

There were no molehills nor mountains, it's all good.

Friday, April 17, 2015

Liability

"Hello?  You left a message for me to call you back? This is the minivan philosopher." I offered to the woman on the other line.

"So we wanted you to be aware of your liability for the CT scan your oncologist has ordered for you." said the woman on the phone.

"Yes?" I replied, holding my breath.

"Okay so your liability is $2,345.00" she almost whispered as if embarrassed to say that figure to me.

"Oh??  Is that the final cost after insurance?" I gulped.

"That's your estimated liability." she replied.

"Well I don't have it.  I guess you will have to bill me." I clipped.

"I will make a note of that." she replied.

"Thank you. Good bye."  I said.

"Goodbye." she replied.

Click.

Yep.  That's my post-cancer diagnosis, ongoing monitoring life.  What am I supposed to do?  I've been having butterfly sensations floating around in my abdomen for a few weeks now.  I told my oncologist about it at my follow up and he said let's do a CT to make sure nothing is going on.  I agreed because I want to know if there is anything I need to worry about.  So I make the decision to go further into debt for peace of mind?  Or do I cancel the scan because I don't have the money to pay my estimated liability and risk that there is something significant going on?  And maybe die of cancer?

The ongoing financial stresses of having a cancer diagnosis and its subsequent treatment (chemo, surgery, medicines, doctor visits, blood tests etc) dishes out as much suffering as all those words contained in the parentheses.  In fact, it's worse because the institutions don't give a rat's *ss about who you are, you are simply an account receivable.

I find myself feeling angry at the helplessness again.  Since my cancer diagnosis in July 2013, I have shouldered the entire financial cost myself.  I didn't start any gofundme campaign.  I didn't ask anyone to help pay a bill.  Not any friends or family.  I didn't get any either.  I did receive help in the form of rides, some meals for my boys and a few giftcards every now and then.  But nothing to help me chip away at the $10,000 or so in bills for which I was "liable'.  And now I've got another $2300 to add to it.  Yippee! Wonderful!  Please sir, can I have another?

I don't know what to do.  I am too young for Medicare.  I have a full-time, good-paying job with insurance so I can't have the state pay for my medical care.  So I'm basically fucked financially for the next five years while I'm monitored by my doctors.

Sigh. 

Cancer... the gift that keeps on giving even when you've said "enough!!"

Monday, September 29, 2014

30 days hath September...

And a busy thirty days it has been!
Lots of tests, procedures, doctor visits  and more.  Mostly brought about because my insurance resets on October 1 and I have to climb that steep deductible hill all over again.  So instead I pushed to get as much done before October 1 as possible all with good results, too!  My PET scan came back all clear again - "grossly unremarkable" said the doctor.  Then my blood tests came back all normal.  So my port was successfully removed on the 22nd. Saying I am so happy to have it out is an understatement.  (I am thinking that perhaps when I pass the five year mark, I will get a tattoo over the scar.)  And then finally today I had my one year follow up colonoscopy and it too came back clear!  They want to see me again in three years!
The monitoring/maintenance plan will consist of blood work every three months for four years and a CT scan every six months for the next two years.

I have also cut my hair short with great results.  My post chemo hair is so wavy.  I used to have straight straight (did I mention straight?) hair.  So having all this wave is quite interesting.  Friday night I was told I looked like Katie Couric (which I have heard before) and also Princess Diana which was a new one for me.  Then this morning's nurse also said Princess Diana.  I am very much flattered.

It seems I've been struck by Paco Rabanne's Million again at Café Eau but this time he's an Italian pilot.  Stay tuned, the philosopher's phase 2 could be really really interesting.

Monday, September 22, 2014

Why have I been spared?

In the last 8 days, death has impacted me 5 times. I am so humbled to still be walking this great earth.  I don't know why. My heart breaks for all the families. I don't understand why this is happening, but am continually being transformed by it. My life will never ever be the same. Sigh.

Tuesday, September 16, 2014

Good for another six months

PET scan results say there is no evidence of disease.  Sigh of relief.  I've made it through six months; 4 years and 6 months to go.

My goal this next six months is to write about other things than cancer... maybe I'll write about sex, drugs and rock and roll.  Or maybe just sex.  ;-)

Anyway here's to having some more fun and for getting a little breathing room!

Cheers.

Monday, September 15, 2014

A fortnight of emotions

What a fortnight this has been!

I had a wonderful visit with my mother and her companion (#teamgary) in Florida.  Four days of bliss at the beach watching the waves slow dance with the shore, lounging by the swimming pool, attending a University of Florida football game and sipping rumchata nightly.  It was my first trip to Florida without children in nine years.  It was soul restoring.  It was long overdue.

Initially I started this blog posting out of a need to get on paper all that has happened in the last two weeks.  I started writing but it felt too juvenile.  So I started editing it, then it felt too restricted and self-censored.  I was staring at the screen frustrated at the problems I was having at writing this post.  So I walked away and did other things still mulling about which approach would be best, what words should I use and more.  And I realized that my frustration was self-induced.  No matter what I write or how I write it, I will always think it could have been better.  And that self-criticism and self-judgment was impeding my writing today.  So I said to just fuck it, write it - whether it rambles, is in bullet points, whatever just get it out.

So here goes.....

Tuesday, September 2, 2014

I wish I had a river to float away on... (just something I wrote today)


Never in the farthest reaches of my mind did I think I would be burying my wife before we would have spent years graying and losing our hair, getting fat and having our joints ache and creak at every move.  No I never thought that our time would be cut short.  Never thought I would be a widower at 48.  Never thought I would be this intimately connected to grief. No I thought we were going to be together forever.  But forever would have been too short too. 

Oh my sweet;

Oh my heart.

The first time I saw her, she was singing.  I had finished with some court business and needed a drink.  I didn’t know it was karaoke night.  I had just about walked out when I heard her sing.  It was hauntingly beautiful; it cut straight to my core and shook it, violently.  Her voice upturned my whole world.  I walked mesmerized to the bar and never took my eyes off her.   Nor did I take my eyes off her our whole time together.  Even when I slept, it was her face, her smile, her laugh in my dreams.  But the real thrill was opening my eyes to see her lying next to me, my dream come true. How am I supposed to manage now only seeing her in my dreams?

I couldn’t believe my luck.  Here, the most beautiful woman in the world let me in hers.  She let me love her; she let me make her laugh; she let me wipe her tears and caress her hair and hold her close.  She let me kiss her; she let me make love to her.  She let me listen to her sing. She let me love beyond what I thought was humanly possible.  And we were happy, so happy.

When she was diagnosed with cancer, she looked even more beautiful to me.  We approached the news with heavy hearts and minds.  The doctors said it was a complicated case.  We tried everything conventional and everything alternative.  We flew across the country seeing specialists, getting IV therapies, seeking second, third, fourth opinions.  Many sleepless nights I scoured the internet for any news, any hope that we would be able to cure this horrible disease.   She was my world, the reason the sky was so blue and the stars twinkled at night.

I felt helpless as she took the treatments and I watched her body, at first, rally and fight the cancer.  But  the days extended to months and once we passed the projected one-year mark, we both knew that her body wouldn’t be able to fight for much longer. 

I remember when she told me she was done fighting:

With tears spilling from her eyes, she said she didn’t want to do any more treatments.  She was tired and couldn’t bear to deal with any more medicine or the side effects.  She said that she wanted to use whatever energy she had to hold my hand and lay in my arms.  She said she wanted what days we had left to be about us and not about doctors and cancer.  She said “I’m absolutely and totally devastated and gutted that I won’t be around longer.  But I’m done being sick and I’m done being angry.  I just want to be surrounded in your love.  Will you do that for me?”  I grabbed her and pulled her to me, my tears never enough to relieve the sadness inside.  “yes, yes” I whispered to her.  And we just stood there, holding each other.  I felt if I held on to her, no one, and especially not cancer, could take her from me.  So I stood as tall and strong as I could and let her pour her heart and soul into mine.  I would carry all that she needed.  I would be her protector.

After she made the decision to end treatment, her body had a slight rebounding.  I naively hoped that it was a sign that she was getting better and wasn’t actually dying.  But about a month later, it was rudely evident, like a serrated-knife cutting skin rude!  Looking back, I’m glad we had that month.  We did as much on her bucket list as possible.  She asked me one morning to take her out again on the bike.  She said she was feeling strong enough to hold on and wanted to enjoy the sensation of the speed, the wind and the vibration of the bike again.  I’m telling you, I took us on the longest, most beautiful ride ever.  I tried to look at the scenery from her perspective and I think God made the colors that much more vibrant, and gave the wind a touch of cool.  I could feel her smiling behind me and every so often, she would just give me a little squeeze.  I whispered back, I love you too.

I hate this.  I hate remembering!  I don’t want this to be past tense.  I want her here.  I want to be touching her and holding her.  I want to be kissing her again.  I want to see her walk through the front door.  I want to listen to her sing again.  I don’t want to be talking and thinking about the last time we did this or we did that.  I want to wake up from this horrible dream and see her smiling face lying beside me.

When we made love, time stood still for us.  Even on those instances (they were RARE instances) when I came too quickly, time still stopped for us.  Our lovemaking was beyond instinctual; it was as if our two bodies were made exactly for each other.  Everything fit so well from our brains to our souls to our body parts.  I would say that when we made love, it impacted the universe but I might just be overcompensating for the fact that she is gone.  But I do know that it changed me, every single time.

The last time we made love, she initiated. 

She said “please honey.  Would you make love to me? “

I stammered “won’t it hurt?  I don’t want to hurt you.”

“I don’t think so.  Take it easy and slow, sweetie.  Please.”

“okay.” I hesitated. “ I’m scared though.  I might break you.”

“Then dammit, fix things so you won’t break me.  Christ, I just want to get laid!  Did you forget that I have cancer and I’m dying!?”

I looked at her shocked.  I stammered over my words, “I, sorry, I , oh, uh, gawd, give me a minute. I’ll be right back”.

I left the room so I could get my shit together. 

Bear with me, the  memories are just...

After a few deep breaths, I returned to our bedroom.  She was sitting on the edge of the bed with her back to the door.  Her shoulders were drooped and I could tell she was crying.  She said “I’m sorry, dear.  I’m just scared.  I wish I weren’t dying,“ she paused to catch her breath between sobs, “I only wanted you to make love to me so I could feel you inside once more.  To have time stop for us.””   She turned to look at me.  Her eyes were swollen from the tears. Her body was so much thinner than I remembered.  Her remaining hair was doing a poor job of hiding her skull.  The scars from her surgeries, the stretch marks from childbirth and that spot by her heart where the chemotherapy port used to be, glistened and shimmered in the light from the windows. 

“God you’re beautiful.” I said and walked over to her.  I took my time with her.  I touched every inch of her body making a mental map. I held her close and made love to her to last for an eternity.  She cried when I entered her.  I thought I was hurting her.  I asked her if I should stop and she said “no, please don’t ever stop loving me.  Don’t ever stop.”  I replied back that I loved her more than I could ever show.

Afterwards in our bed, cuddling and talking, she took my hand and weaved her fingers in and out of mine.  She looked up at me and said, “Darling, I keep thinking I need to tell you how much I love you and how sorry I am that I got cancer.  I keep thinking that I need you to know how thankful I am to have been your friend, lover, wife and that if I could change things, I would stay alive forever to be with you.”

I tried to shush her but she continued.  “please know all these things.  Please know that for everything I have said, there is so much I didn’t know how to say; that my love for you goes deeper than the words available to describe it.”  She wiped her tears.  “And that there would never have been enough time.  But I thank you for everything.  Everything.”  She sobbed through those last words.  I can still hear her say it.  I can still feel her chest heave with the tears and the breaths.  I can still feel her body fall into a slumber while I held her.  And I can still feel the sting of my tears.

She didn’t last much longer. 

She was surrounded by her family, her children, a few close friends and me.  I was sitting beside her cradling her in my arms, her children touching & holding her as well.  The morphine eased her pain.  I told her it was okay to go.  That I loved her and I always would.  And with her eyes closed & using all the strength she had left, she squeezed her kids’ hands, took three breaths and stopped.

And she was gone.

Just like that.

Saturday, August 30, 2014

I hate cancer!!

My friend from my weekly support group is now in hospice care. She is 42. She did everything right. She is simply amazing. Her husband & 2 daughters are so devoted. There is sooo much love there. I can't stop crying. Crying for them & for me too. I hate cancer & what it does to people. I ask every day why did this happen to me? Have I been spared/cured? If so, why? How long do I have? What should I be doing? Why does the body turn on you? Why? Why? Why? It's just a matter of days now. She is in a lot of pain right now. That her pain will be over is a small, very small,  comfort.
Is it selfish that I am so thankful it is not me on hospice? I hope though that whenever it is my time, that I carry myself with the grace & courage she has. But I don't want to face that for decades upon decades. Decades.
Sorry. I'm a bit of a mess. Alone in the dark, a mess. My heart is so heavy for them; and then my own emotions for me come crashing like waves on a beach before a hurricane.
Sigh, exhale.

Wednesday, July 16, 2014

Numb3rs

Numbers.
365 days.
1 surgery
2 colonoscopies
2 MRIs
2 CT scans
3 PET scans
5 ER visits
12 chemo treatments
25 pounds gone (10 jumped right back on)
150 hot flashes
-20 wind chill
1 weekly support session
47 Caringbridge entries
5 pairs of gloves
3 hats
2 wool socks
1 chemo blanket
1 chemo fanny pack (burned)
1 grey hoodie.
$252,000+ billed to insurance companies
And a million prayers said!
All this in the one year since I received my colon cancer diagnosis.  One more number that really takes the cake – two weeks ago at my latest blood test, my tumor marker (CEA level) test came back…  <=5 of whatever units they measure is considered normal or good…  my number…. 1.4!!!
I feel pretty amazing.  Hands and feet getting better every day (love my B vitamins!), muscles stronger, taste buds back (hence the 10 pounds), hair growing (I’ve got bangs!  I haven’t had bangs since 4th grade!).  There are days when the memory of my cancer journey seems like a dream that someone else lived.  Then there are days when I remember every gut-wrenching side effect and am thankful they are, simply, a memory now.  (Especially those clear the room chemo farts!!!)
Thanks for being along for the ride, for your words of support and encouragement, for the meals, the rides, the “sure, we can talk about this cancer thing some more” patience and for the love.  It’s what makes everything bearable. 
Love you.  Thank you. 

Sunday, July 6, 2014

One year ago I was clueless....

It feels so strange to be here. It seems surreal that one year ago I had NO clue what I was about to be faced with, undergo and overcome. Last year at this time I was nursing a confused, sad heart. I had no idea that my colon was nursing a cancerous tumor. No idea.

It was a little overwhelming for me today as I set out on my usual lake house walk to recall last year's vacation and the innocence I had. I look at the flowers, the farmhouses, the baby chipmunks differently now.  I felt slightly jaded as I walked on feet that still feel stumpy but are improving daily (approximately one millimeter per day). Gone is the feeling of youthful hope and joyful wind breezing through my soul. There is a quiet tentativeness instead. Believe me, I am happy to be alive and to be done with these last twelve months, but I'm just way more emotionally cautious now. Your life can change in a flash. And that flash can feel like forever. And ever. And ever.

I am happy to be here. I've got my stack of library books to read. And, they've got wi-fi here now. (Insert smiley face emoticon). It's just different now. It won't ever be the same. Nor will I.

The one-year anniversary of my cancer diagnosis is ten days away... I'm betting I'll be spending a lot of time remembering this time last year. Pardon me while I retreat into my soul for a few. I'll be back. I promise.

Wednesday, June 4, 2014

Sparky 2006-2014

The first time I saw him I knew he would become a part of our family.  I was sitting in the minivan with the kids just after church and I spotted two young beagle/lab(?) mix puppies sauntering back and forth across the street having so much fun.  I could almost hear their laughter from the smiles across their faces. 

The children and I worked with another family to corral the two dogs and put them in their backyard.  We fell in love with both dogs immediately but I knew I wouldn't have the stamina to have two puppies.  We left both dogs with the other family for our weekend trip to my brother's place in Oklahoma.  When we came back, the other family asked if we wanted one of the puppies.  We jumped at the chance and crossed our fingers that we could have the one they had named Sparky.  We brought him home that hot August day in 2006.  We were all thrilled.  I was thinking I must be crazy to take on a dog along with raising three children (11, 7 and 3) by myself.  But somehow I knew he belonged with us.

He fit right in.  He bonded with my ladybug and became truly HER dog.  Whenever she was around, he preferred her.  He would tolerate the rest of us but his heart was glued tightly and forever to her.  They played together.  She nursed him through his recovery from the neutering procedure.  (He was approximately 9 months old when he joined our family).  He followed her wherever she went.  He was her best friend.

Ladybug started playing the saxophone in 6th grade that year.  She would sit on the back porch practicing her scales and her lessons while Sparky sat beside her, howling and singing right along with her.  They were my very own lounge act.  I loved it.  She loved it.  And Sparky loved it.

He also loved to hide his prized possessions.  One time my sister gave Sparky (and our other dog Toby - we got him a year after Sparky & that was when I KNEW I was crazy) some chew toys.  Sparky loved getting chew toys and going to work immediately on them. However chew toys that resembled a bone were like gold to Sparky and he would set out to find the best hiding spot for it.  The scene would go like this:

Sparky would lurk around with the 'bone' in his mouth casting sideways glances at the two-legged and four-legged inhabitants, assessing who was watching, was it safe to hide it.  When he felt it was, he'd 'hide' it (maybe under a shoe or next to a back pack or under his sock collection).  And he'd walk back to the living room with the rest of us.  Toby would go 'find' the bone, retrieve it, bring it to the center of the room and start chewing on it.  Sparky would look at him with disbelief that it was found.  He would be thinking "How does he know?  Every. Single. Time?"  Sometimes Sparky would go so far as to hide it outside.  Toby would go out a few minutes later and bring the bone back inside.   Toby would chew on it for a few minutes and then abandon it to sit in the picture window barking at the falling leaves or two-legged creatures who might be breathing one street over. 

Once abandoned Sparky would tip toe back to the bone, pick it up in his mouth and start looking for a better place to hide it.  As long as you were watching him, he'd act like it was no big deal having a bone in his mouth.  Once he thought you weren't watching him, he'd hide it again.  Maybe this time in between shoes or besides the foot of the couch always making sure to creep away from it in order to not draw attention to it.  Within seconds of Sparky hiding it, Toby would be picking it up again.  This would go on for hours.  Watching this dynamic would leave us in stitches.

He loved going on walks around Carondelet Park.  He had to put up with being on a tandem leash and having Toby pull and bark the whole time.  When he did get to go on walks solo, he seemed to relish in the peace and quiet and attempted to pee on every tree, bush, fire hydrant, and mulch pile.  One time Ladybug had him on a walk and when they returned home, Sparky was sopping wet.  I asked what had happened and Ladybug told me through her tears and laughter that he just fell in Boat Lake.  Walking along minding his own business and not paying attention, splash! he went into the water.

He loved his sleep and especially on the big bed in Ladybug's room.  If you entered the room after they had retired for the night, he growled and barked so ferociously that if you didn't know better, you'd be concerned he'd bite your head off.  He was simply being protective.

When Ladybug went off to college and I started my chemo treatments, he followed me around.  He laid on the flokati rug beside my bed; he snuggled next to me on the couch in the basement; he laid beside the couch in the living room.  Wherever my tired, cancer-fighting body was laying he was there.  He would follow me to the kitchen, to the bathroom, outside, to the laundry room.  He became my shadow.  But his heart was still betrothed to Ladybug.  Sometimes when we would Facetime, Sparky would hear her voice and spend the whole convo trying to find her.  We thought it so cute and endearing at the time not thinking that maybe his heart was hurting with her absence.

I thanked Sparky last night for helping me through my chemo treatments, for being there when I couldn't breathe (a side effect of one of the drugs) and giving me a calm, loving face to focus on as I attempted to relax and get air back in my lungs.  I thanked him for keeping me warm all those fucking cold winter days/nights when the cold sensitivity made being anywhere painful.  I apologized to him that I couldn't help him get better.  And I thanked him for staying alive long enough to let Ladybug hold him close and kiss his face while he was put to sleep. 

Our hearts are breaking. Our grief is real.  We loved him so.


 
Sparky
2006-2014
RIP

Friday, April 25, 2014

Post chemo PET Scan results

I had a follow up PET scan on Wednesday, April 23 (7 weeks post chemo) and the preliminary results show NO EVIDENCE of recurrence or metastatic disease!  Yeah!!! Happy Dance!!!!

I know I am breathing easier, dear readers, as you are too.  I meet with my oncologist next week for my first follow up visit.  I envision our conversation will be just as interesting as it was during our bi-weekly visits the last seven months:

Doc: "how are you feeling"

Me: rambling on and on about this side effect and that side effect and giving unsolicited advice on how to better interact with his patients and asking to be prescribed something to relieve the pain in my hands/feet...

Doc: "okay see you in 3 months, bye."

But all that won't bother me because for now (and hopefully forever) I do not have any evidence of cancer.  I do have lingering and painful side effects. It will be so nice when my nerves have healed and my skin is no longer sensitive to everything.  Certain fabrics feel like sandpaper against my skin!  (perfect excuse to purchase a set of 1500 thread count sheets from Amazon... they are A-MAZ-ING!).

I'm also dealing with arthritis in my hands and elbows but my taste buds have rejoined the living world.  Thankfully my hands tire out quickly so holding a fork for a long time is not possible therefore I am not able to overeat and regain all the weight I lost.
Anyway, I am happy.  The sun is shining. The weather is warmer.  And I am healthy. Tons to be thankful for!!!  ((Hugs))

Monday, March 31, 2014

What you need is just a little adjustment...

It's been 30 days since I was disconnected from chemotherapy... and a few of the side effects have waned but the numbness in my fingertips and the balls of my feet along with the electrical spasms in my ankle tendons are still happening.  I did a little research online and some colon cancer survivors report that their chemo side effects peaked at one month, then dissipated; others report that it was 2 months or 3 months.  And one reported that it had not gone away at all and that her fingerprints had also disappeared.  Well I immediately checked out my finger tips and guess what, my prints are disappearing too!  I pray this does not mean the neuropathy is here to stay (pray with me dear readers, pray with me).  I'm continuing my supplements and hope after my PET scan later this month that my oncologist will let me also add the Methyl folate supplement to my regimen.

This morning I saw my chiropractor for my usual acupuncture appointment.  I told her of my continuing side effects and she said she wanted to try something different... she adjusted my back, my neck, my hands... did a little massage on my neck and spine/back and then put the electrical stimulus on my neck and upper back.  Boy that was interesting feeling my right arm and shoulder twitch (a reflex to the stimulus) while the left did not.  She said that the neck area controlled so many of the nerves in the hands that she hoped I would get some relief.  I will see her again in two weeks and said if it's the same, then I want her to put acupuncture needles ALL over my body... make me look like a porcupine for 20 minutes.

Anyway here's hoping I get some improvement because it is so weird typing with no feeling in my fingertips.  Believe me, so weird!



Sunday, March 23, 2014

Love, it's what life's about.

Remembering...

365 days ago I couldn't sleep; I packed & rechecked my bags; I looked at the special gifts I had selected just for my Fox (special chocolates like no other in the world, a beautiful blue tie, a USB filled with special songs, cards with my heart written on every spare inch); I was so ready to be back in his arms & feel his kisses. And I was nervous because it was snowing steadily, would my plane even make it out?

Yep that was then. This is now.

In the morning I met realtors at my grandparents' condo. I packed up grandma's crystal serving dishes & candy jars wondering how I'm going to be able to get rid of it all. In the afternoon I put the second coat of paint on the trim in the Sage's room and thought and thought. There's something about the repetitive motion of painting that lets me trip through my memories undisturbed.  And then Fox and I facetimed. I haven't spoken with him in over a month. Although we talked for nearly an hour, I'm always left feeling like there's so much more I wanted to tell him. I'm still disappointed as I wrote in my previous posting, but I don't let it get to me.   Life is too short to dwell.

He said I still make his stomach flip. He said he wished he could be here with me cuddling. I agreed but told him the cuddle would come after a few well-placed & well-deserved smacks on his arms. He laughed. He got the gist.

After lamenting that time & distance had impeded us (& other things/people too I might add), I reminded him that the Universe has her plans & time frames and we never know what's in store. So don't give up hope, someday it could come true. But don't put your life on hold, because again it's too short. Way. Too. Short.

It was nice to see him, hear his voice, watch him toss his head back when laughing and catch the twinkle in his eyes that entranced me right off my barstool and into his arms.

We're both different from when we first met, yet the same too. I like that. The link above recorded how I felt on the anniversary of our meeting... Even with all the ups, downs, sideways and 360degree rotations, there is still a Fox print engraved on my heart & soul. Don't worry dear readers, I'm still moving forward with my life. Just letting the Universe do her thing... and thanking her for the beauty & love that surrounds me even if it's 4199 miles away.

Okay enough of the mushy stuff, here's the latest cancer update:
23 days post chemo... Hair not falling out, actually have wisps of new growth; still get fatigued but been going to Zumba twice/week & trying to move more so my muscles gain strength back; numbness & tingling continue in fingers & balls of feet accompanied by annoying spasms of my ankle tendons... Let's just say WEIRD!!!

PET scan April 23, see oncologist April 29. First port flush on April 7.

Sad news: one of my support group buddies died from pancreatic cancer last week. He fought it for 2.5 years. I hope he was able to get all the family home movies transferred to DVD like he wanted.

Sad news 2.0: met a woman diagnosed jan 2013 w gallbladder cancer. She had surgery, did preventative chemo (adjuvant like I did) & her cancer came back in January 2014 & this time docs have given her 6 months to live. Ugh my heart just breaks for her. She's 42 & has two boys 8 & 10!
I have so many thoughts that race through my mind regarding cancer but it will have to be another post.

And finally sad news 3.0: my former exercise instructor (not Zumba) at the Y was recently diagnosed with leukemia. She is 41, in TOP NOTCH physical shape, has no insurance & two young kids (under 5 years old).... Why oh why oh why?

Did I mention that life is too short?

Hug your loved ones, call those friends on your mind, make & keep lunch/dinner dates, laugh as often as possible, put love first... In other words LIVE while you can.

Peace, love & hugs to all of you my dear readers wherever you are in our Universe.
-the Philosopher

Friday, March 14, 2014

Out of the Fox hole finally...

 
 
 
It is very clear to me where I stand with the Fox. I have distanced myself and he has not noticed at all.  I have finished my chemo treatment and he was the only one of my friends who did not say anything about it.  I asked him for one thing, a playlist, for me to listen to during my 12 treatments of chemotherapy.  He did not deliver.  He had over six months and the only thing he did was send me a link to one song that was going to be on the list.  As I reflect back on our time together, his actions rarely matched his words. (I wrote about this in my post All I Ever Wanted.)
 
I don't miss the emotional rollercoaster that I was on with him.  I don't miss the way he would spin everything to suit him. I don't miss the way he would latch on to personal things I would share with him that he would then use against me at every opportunity to make himself feel superior or to justify his actions.  I don't miss being accused of snogging or shagging every single man who said hello to me.  I don't miss that jealousy. I don't miss his chimp-on-the-loose.
 
I do miss our funny banter and our passion and our intellectual compatibility.  And I do grieve the loss of the fantasy that he promised. But his issues and his problems are too toxic for me.  I am disappointed that he could not be the sort of friend that I had hoped he could be and that I had witnessed during my surgical recovery. 
 
He has his new girlfriend.  They have their plans.  Good for them. He has a BUNCH of baggage and has left holes in quite a few hearts along the way.  But this girl, former "love of his life" has worked hard to patch the holes he left in mine and it is stronger than ever.  That is the most important thing.

Wednesday, March 5, 2014

All side effects present and accounted for...

Wow, my last chemo treatment really wants to make it memorable!  It seems that 95% of the side effects are in play this go-around.  Two that haven't made an appearance yet are the continuing hair loss and the frog-in-throat issue (makes for very difficult swallowing).  But fatigue, muscle weakness, chemo brain (feel like I'm in la-la land, at least I don't feel angry), super-duper cold sensitivity, numb fingertips, millions of nails stabbing my jaws, stinging tears (I mean the kind that you immediately stop crying because the stinging registers a 10 on the pain scale), and chemo flatulence that can clear a room (thankfully it's just been me and the dog the last few days and I blame it all on him!) are all present and accounted for, reluctantly. 

It would have been nice if number 12 could have been like a long, luxurious massage from a well-tanned, bare-chested, non-English speaking, prime specimen of a man that leaves you breathless for days, even weeks.  But no, instead, it's like a visit from the makers of torture chambers who need to try out their latest pain-maker on an unwilling-but-realize-it's-necessary-to-be-cured victim.

Anyway, I'm simply continuing to incorporate all my 'healing' methods and drinking as much water as possible to flush the Oxiliplantin, the Leucoverin, and the 5-FU from my body.  It's been 7 days since my last infusion and 5 since disconnect and they've been tough.  But, I am done.  So that keeps me focused on recovery and hopeful for the days ahead.

Some very good news that I wanted to share.  Yesterday, I had a follow up colonoscopy because I had experienced some bleeding again.  Yes, talk about freaking the fuck out that day and the days that followed!  I felt like I was going back to the scene of the crime (otherwise known as "diagnosis day").  I was put in the same preparation bay as before and had the same doctor as before. That was the extent of the 'sameness'.  This time I was in a different operating room, (I call it the "good news" room).  And everything came out GREAT!!!  I've got a nice, clean, cancer-free colon, & no hemorrhoids either.  Doctor thinks that the bleeding may have come from the surgical site (where they resected my colon) because it looked a little inflamed, said it wasn't anything to worry about. She wants me to have another one in six months.  We were both very pleased with the outcome of this colonoscopy.  Very.

I have a follow-up PET scan on May 22 and a follow-up visit with my oncologist May 29.  Feeling pretty good at my chances.  Looking forward to being able to call myself a 'cancer survivor'...


One of the beautiful bouquets I received on my last chemo day

Saturday, March 1, 2014

C'est Fini!

It's done.  My final chemo treatment.  No more.  Can't explain the overwhelming sense of relief to finally be here.  I never want to go back, ever!

Just resting and dealing with side effects.

But I'm done.  I made it.  Dance a little jig for me.

Wednesday, February 26, 2014

24 hours

That's all that's left till I start my 12th & final chemo treatment. I honestly never thought I'd get here in one piece with any sanity left. But I am and there's a few marbles still rattling about my brain, thankfully.

One more set of days where I feel physically awful. Just one more. Then you, my readers, will get to read about my wonderful recovery journey. Can't wait? Me neither.

Cheers!