Trick or Treat - A Day in the Life of Chemo Treatment

Happy Hallowe'en on this soggy October 31st. Not being a real fan of the dress up thing, I thought we might take a walk down Chemo Lane today. I promise not to scare the day lights out of you but rather share the experience of having treatment. 

We arrived 20 minutes early, I checked in, no sooner sat down when called to 'enter'. Wow that was quick although you're never left waiting. 

My nurse said 'we even have your meds ready!  We have patients who waited over 2 hours and just got them.'  Right off the bat I say thanks to God for taking such good care of us. 

I settle into Chair #8, with an inside view, and you can tell from the photo, no one's privacy is breached otherwise I wouldn't even consider taking it.  Warm blankets on my arms to coax the veins to the surface and a volunteer soon offering snacks and a drink. 

There's no trouble getting the IV in on the first try with the first pre-med of a steroid, dexamethozone soon coursing through my system. This is followed by ranitidine and, finally Benadryl, each taking about 15 minutes.  All 3 of these are to prevent reactions to the chemo drug itself which is called paclataxol.  I just learned today, this drug is particularly sensitive to patients and one of those which people will react, sometimes severely, on the first or second session.  Once again I thank God for the tolerance I have had with my own chemo cocktail. The entire process will be just over 2 hours. 

Already patients have come, others have gone, all the while every chair filled with people traveling their own path with stories as unique as the 'bums in seats' and the protocol of drugs pumped  into each of us. All sizes, shapes and ages, except those under age 18 who have their own child friendly spaces. 

Our friend Tess just arrived, our faithful advocate, supporter, and interpreter who provides a much needed set of ears when we go to appointments and chemo sessions. She is a wealth of knowledge as a retired nurse with a solid understanding of most things medical.  Every day Tess and the members of her family in medicine review what's new in their world, discuss things at family gatherings I'm sure. I likened it to the 'Red Bloods', similar to the police show 'Blue  Bloods'.  And we are the grateful beneficiaries of some of that expertise.   When I first had chemo in early 2013, Tess and friend Marion brought a beautiful dollar store variety of a tiara along with a hand made note on a piece of lined paper to celebrate the Princess of Chemo.  I just spent quite a lot of time trying to find the related photo and have given up.  I'm sure you can picture the moment in your mind.

The hum of machines along with low level chatter among patients, friends and families helps time pass. Some of the nurses joined in the spirit of the day, caring for their patients as a hippie from the '70's, a bee, unicorn and the like, bringing smiles to everyone they meet.   The care is truly as good as you might hear.  And I don't mean the ever beeping and ringing of bells to signal meds are done! You never feel left waiting, wondering or hoping for someone to come by.  The teams work as one, seamlessly helping one another to ensure we are all looked after with utmost compassion and respect.  As you sit there, a common sight is to have patients waltz past with their I.V. poles as silent dance partners heading for the bathroom to flush out the liquids almost as quickly as they're being pumped into us! It's a place of familiarity, a passing glance, eye contact leading to a knowing smile, even blank stares for those choosing to deal with the day privately, in their own way.

After my turn to dance Mike and Tess become engrossed in a discussion about the recently established hockey pool Tess has joined.  How she knows all those players, their names and styles of play is totally beyond me. Maybe as a grandma of 7, including 5 boys I think almost all of who play hockey, is an important way of keeping in contact and engaged.  We after all have 9 grandkids including only 1 boy with none of the girls involved in Canada's favourite sport.

Before we know it, the chemo drug is done, on my return from the bathroom, it starts to ring and bingo, treatment is complete for another week.  A little flush here, a little pull there to remove the I.V. a piece of tape to wrap things up and we're on our way.  At just past 3:30 in the afternoon, it's unlikely anyone will be arriving to start chemo.  Their typical day is from 8 - 4:00 or 4:30 with a couple of nurses working until 5 or 5:30 for those of us who 'draw' for the latest times.  It's all done by way of some internal 'lottery' for times and maybe even chairs.  So far I've not had a 'window seat' overlooking Lake Ontario.  I like to think those spots are saved for those who may just be starting their own adventures in prayer and medicine.

We find our way back to our cars, and fortunately our parking angel has accommodated us over the years of treatment and appointments, allowing for a spot fairly close to the cancer centre.  We pay a special rate of $1/hour to a maximum of $5/day.  While it used to be free, a decision was made to implement a reduced rate for cancer patients in order to be closer to fair to other patients who also may have to spend many days at the hospital (like dialysis patients) who pay regular rates.  We feel it's worth doing our share.  After all we are blessed to have such specialized care a mere 20 minutes from home.

The chemo appears to be working by the results of regular bloodwork done the day before each treatment.  All is in line with no more concern about a block in the bile duct which means no stent or shunt will be necessary.  My abdomen feels more settled than before and while fatigue has become a constant companion I am befriending it, giving in as needed with intentional rest periods rather than 'pushing through'.  A friend commented today, describing my situation in what I think is pretty close to accurate, on how I am living with 'an acute chronic condition'.  While it doesn't fit with the definition of acute completely being 'sudden, severe', neither is it simply chronic which is often known as 'long lasting, slow progression', in my case it seems the disease acts up in an acute fashion leading to treatment almost on a crisis basis.  My experience has been, an acute onset like last November and a little less acute this fall, once treatment is started I bounce back well and quickly.  This is the third time (at least) in this post I thank God, now for how well I tolerate the weekly sessions.

Lots more has been going on in my life over the past couple of weeks with courses and workshops, mostly ending and I hope to share some of the insights I've gained in future posts.  I'm home now and doing my best to hydrate and flush out my system as quickly as possible.  Funny isn't it, drink, drink, drink to have nice plump veins in preparation for chemo, then drink, drink, drink after to flush it all out.  And you know what follows, pee, pee, pee and pee some more.  I work hard not to fall asleep once home in the hope of having a reasonable night's sleep tonight, especially given the steroids which have caused 'restless legs' leaving me thrashing most of the night.  So far so good, we're into watching the National and I think my napping has been short from what I can remember!

Another Halloween evening has ended with a total of 10 children coming by for trick or treats, our newest little neighbour being the first as a 2 1/2 month old pumpkin.  Whatever treats are left will undoubtedly by enjoyed by Mike, and me I must admit.  We hope you enjoyed the evening if it's your thing and enjoyed the pause if not.  I'll be aiming for a reasonable night's sleep but even if I don't, I'll be ever so thankful for having a clean, comfortable bed to rest as best I can.

Until next time, keep well, stay in the moment, remember tomorrow has its own share of concerns, and we'll be back mid November!

Take care, hugs and 

God Bless,

Liz

dobbsjones@gmail.com

"Prayers wrapped in faith and sent with love are the greatest gifts we can receive"

 

Adventures in Prayer & Medicine Turns 5 and Life Goes On

Little did I know when the very first message on this blog, posted on October 11, 2013 and the second on October 16, 2013 would lead to marking today's 125th message a fifth anniversary!  If you're shaking your head, I'm right there with you.  Like those little dogs in the back window of cars with their heads bobbing to and fro' wondering where they were going and how they got to where they were.  

It also marks Mike's fifth year since having hip resurfacing surgery and me finding a note in my medical file to say I had 'likely less than a year'.  Hah, little did they know who they were dealing with.  Mighty Mouse cloaked in God's armour (Ephesians 6:11, Isaiah 59:17), part of which includes 'a shield of faith, helmet of salvation and sword of Spirit'.  All one has to do is read a sampling of posts since that time to see how much life we've lived since then.  Thank God faith is on our side. Now can you just picture me waddling around draped in all that mettle!?  

Seriously though, we are ever so grateful for the time we've had together over these last five years, focused on the important rather than the urgent, setting priorities in line with our values, living the clichés because they're so obviously true, and thankful to God for every day He has given us.  With so much water under the bridge I continue to wonder how many more people I might outlive who have not even been diagnosed with an illness yet.  It's been mind boggling and all the more reason to live every day with kindness and gratitude.

Despite being back on chemo, our plan of activity seems to be in a little bit of overdrive of late.  We managed to visit Mosaiculture in Gatineau in time before it closing (today) and as Mike said 'this was a good call.  It's spectacular'.  A display of over three dozen Canadian themes, some stories high, all made from live plants.  If by chance the photos show up on my computer from my phone by the end of this post, I'll share a couple, but you can always go to the website mosaiculture gatineau to see some truly amazing sights.

From there we went on to Pembroke to visit overnight with Kirk and Lynda en route to North Bay for our send off for my brother Andrew, on Thanksgiving Saturday.  Last time I mentioned how Mike agreed to organize the event and I need do nothing, or something if I wanted.  In the end I sought advice from Fr. Leo for a reading from the Bible and planned a tiny bit of whatever 'ceremony' there would be.  There are some funny points which might show how much he was there with us in spirit.
On Saturday, it was misting lightly so we had breakfast at Pinehill Variety Store and Coffee Shop, went on to pick up the tree Mike had bought for the marker then headed 60 km north of North Bay to the chosen 'spot'.  On the way, Mike pulled over at least three times to allow traffic to get by, especially before the passing lanes as we were going 80 km in a 90 with the tree, while covered, flapping wildly in the rear of the truck.  

We were literally a minute before our turn off at Marten's River when we were pulled over by the OPP, woo-woo lights and all.  Oh my, can you believe it, he stopped us for going TOO SLOW!  I could hear my brother laughing all the way from heaven.  Of course the interrogation was brief given Mike's explanation of how we were going to plant a tree for a 'friend' (don't want to give too many details).  

    A group of us, about 12, met at Trapper Trading Post, beside Lumpy's Eats & Treats, then headed toward Andy's final resting place.  The weather, expected to be cold, windy and rainy, was mild with a very light mist and no wind.  How nice is that!  Mike led the way with going around the circle with each one having an opportunity for any last words followed by taking turns sprinkling ashes to encircle the 'Ruby Slippers Amur Maples' tree planted in his honour.  Little anyone know or realize, the name of the tree held very special significance to me which I'll share shortly.  The type of tree only became known when the young boy from next door asked what kind of tree we were planting.

A very dear friend of his dropped a huge dried poppy she and her husband had picked in Holland in 2010.  She felt he deserved a poppy and not a cheap, plastic one.  It was fate she believed having held it for so long. 
Another couple laid roses which had survived since the Celebration of Life in May and were intact other than dried.  Before planting the tree I read two quotes from Andy's favourite, lifetime author Louis L'Amour, a short poem and a letter, both of which Andy had penned to our Dad.  Lastly I read a Bible passage and we said the Lord's Prayer, the 'Our Father' together as a group.

The tree was then planted with the plastic cremation container used as a watering can of sorts from the water nearby to start the new growth of Andy's tree.  Once finished and we started heading back to our cars, the skies opened up and we were all drenched just in time for the drive back!  We all agreed Andy was sending us on our way.  We planned to meet at Pinehill for a reception since the folks who work there could not join us

Back to the Ruby Slippers.  Anyone who has known me for any length of time will know my favourite movie of all time is the Wizard of Oz.  Andrew used to buy me Hallmark figurines and, even one year for Christmas, gave me an entire, pewter collection of Wizard of Oz figures! From Kansas no less!  When our Dad passed away I asked our friends doing the music to sing Over the Rainbow as Dad had so often referred to the bluebirds in life.  After the funeral, Andrew remarked "I knew you'd get the Wizard of Oz in there somehow!"  In this case, regarding the tree, I had no idea and thought Mike was keeping the type of tree as a surprise for me.  Not so!  He had no idea other than it starts out green and is supposed to turn bright red in the fall.
Thanks Andrew for letting me know you were teasing me about Dad all those years ago.

Reception for Andy at Pinehill

Stephanie & Andy's seat in the corner

 Some of us enjoyed a hot cup of tea,  some coffee, soup and some even poutine once back in North Bay and sensing Andy sitting on the stool in the corner of the lunch counter just smiling at us.  One of his favourite staff, Stephanie, shared with us how she'd driven her boyfriend's ATV the previous weekend, crashed, totalled the ATV but walked away with nothing but a sore wrist.  She was convinced she was protected in ways heaven sent.  Needless to say, we agreed whole heartedly.  The girls still tear up when we visit and recall Andy's larger than life presence at Pinehill.

As we packed up our things Sunday morning, we acknowledged this was likely to be out last visit to what has been known as Andrew's house for over 15 years.  He is now at rest and we no longer need to occupy his space to retain our memories of him.  We can now do so anywhere knowing he is happy with everyone's part in his final goodbye.  For me, an especially important lesson was gained.  Something, once again, my head has known but never felt in my heart in such a way as that Saturday, October 6, 2018.  By declaring my inability to organize Andrew's farewell gave a gift of infinite, heartfelt joy to those who took an active part in doing so.   I will never know, nor should I, other than the joy in my own heart, of how they might feel.  I'm almost overwhelmed at what must have taken place between Mike and one of Andy's friends who Mike talked to when deciding on where, what and how.  Imagine being asked by family of a friend, for advice on such a deeply intimate matter and then to have those suggestions followed.  And who knows who else was given the same gift since Mike didn't share many of the details or conversations with me.  I feel so honoured to help facilitate what will hopefully be lifelong memories for some of these people who cared so deeply for my brother.  It was only possible by daring to show my vulnerability that God could work through others to make it such a perfect day.

The other evening, after months of monkeys jumping around in my brain, a very clear cut means of fulfilling one of Andrew's wishes came to mind.  Think of it like something being totally muddied only to be rinsed clean in the snap of a finger.  It was to notify his email contacts he has 'Gone on the Long Ride.  Remember here you're reading the words of a techno peasant.  What seemed almost miraculous was how simply it came to me.  Alone at home, I decided to start at a certain time, did what I thought would work and within two hours had the job done, complete, finito.  I had to use his computer which I'm totally unfamiliar with.  No matter.  Best part, I've already received at least four responses from people who did not know of Andrew's passing, who shared stories and photos of how much they admired and respected him.  God is good.

On that note I will leave you with one more God wink for consideration.  I've been in contact with a woman for several months who was interested in speaking to someone who was Catholic as she had decided to return to church as a result of a hospital stay where she met the Chaplain.  We visited a few times, kept in touch by phone and email.  Just before leaving for Gatineau I called to see if she was up for a visit since she had entered Palliative Care in hospital.  She wasn't up for it but said to 'come quick.  I think I'm on the last mile.'  Her friend told me they'd call when she felt well enough for a visit.  Yesterday's paper included her obituary.  She passed away the same day as Andrew's send off.  A date I'll never forget.  May she rest in peace.

Take care, keep well and God Bless,
Hugs,
Liz

dobbsjones@gmail.com

"Prayers wrapped in faith and sent with love are the greatest gifts we can receive."