Road Trip Detour

Over the years, our family did a lot of travel in our Van. When you have five children, the cost to fly was beyond the resources in my piggy bank but I had the advantage of attending many eLearning conferences up and down the eastern seaboard. My employer allowed me the option to drive up to the cost of my own flight and at every destination paid for accommodations. We made trips to Boston and Orlando in this way.

Janet and I set the goal of having a major family road trip every other year. In addition to the conferences, we made a cross-Canada trip to attend a wedding in Edmonton, traveled to Toronto on several occasions with side trips to Montréal and Ottawa, visited Boston many times, attended Broadway shows in New York City, stayed in Myrtle Beach on our way to Orlando, plus found cottages in Nova Scotia.

I really enjoyed all these family moments. Typically I drove through the night so the children would sleep. This made the time in the van pass more quickly. It left me tired at the destination but a good sleep put spring back in my step.

From time to time, our road trips were subject to unexpected detours. That seems to be an apt way to describe changes in my cancer prognosis which unfolded this week.

Today (Wednesday, January 12, 2022), Janet and I met with Dr. Wojciech Morzycki to chat about what comes next based on the results from my December 31st CAT Scan. The long and short of it is that the chemo drug Venorilbine made no difference. My last chemo treatment was Tuesday, December 14th. and there will be no additional treatments going forward. My focus is now on “Quality of Life” and in terms of how long I have to enjoy waking up each morning on this blue dot, we call planet Earth so that each day is a source of joy and not a struggle with feeling sick all day is a timeline only God knows.

My mindset continues to be to live large. I do not plan to lie in bed waiting to die.

Health Update

Most of my updates focus on blood work, the state of my immune system, and how I’m feeling. In this post, I plan to describe what is happening with my liver, what will happen in the future, and the adventures I plan to put on my calendar to keep building memories with Janet, my family, and friends.

Let me start with an overview of what’s going on in my liver.

  • I have esophageal cancer which spread to my stomach and matastized in my liver. It is not curable. I’ve gone through chemo treatment with one goal: extend the duration of my life. There is a price to pay as putting chem drugs makes me sick and uncomfortable; that’s a price I was willing to pay to hang around longer.

    Officially I’m classified as a palliative care stage 4 cancer patient. Esophageal cancer is slow growing and in all likelihood, the first cancer emerged two decades ago. All slow growing cancers are very difficult to treat, not because their particularly unique, but because they are not detected until well advanced.
  • My liver is more that 50% innundated with cancer. That is a significant increase from my last CAT scan and the cancer cells will continue to replicate, overwhelm my liver, choke out healty cells, until my liver is unable to function and produce the enzymes needed for digestion. At the same time, I can expect to find myself subject to fatigue more of the time.
  • Although no Oncologist will speculate on life expectancy, and any speculaton may prove to be way off the mark, Dr. Morzycki suspects my liver will be fully innundated in three to four months if my disease progresses at its current rate.

    However, that doen’t mean my liver will fail to function entirely although it’s enzyme output will be negatively impacted. And there is no reason to think the progress will continue at its current rate; it could slow down or accelerate. There are way too many unpredictable factors to say anything with confidence other than my cancer will continue as a wasting disease and the outcome will eventually be death.
  • The lesions and tumors in my liver are joining together and range in size beween 2.5 and 3.5 cm.

    I can now feel the edge of my liver at the base of my ribs on the right side and that will continue to be more evident over time. I expect it will continue to grow in size and given I no longer have a stomach occupying the space, there is plenty of room for it to fill.
  • Since I’m off all the chemo, I am curious about whether there is value in continuing with the daily injection of the blood thinner Fragin. I called my Hemotologist Dr. Allan Tran for an opinion. My motivation is to give my skin a chance to heal and toughen up. Right now even a gentle rub often results in a bruise and if I break the skin, I bleed.

    It turns out that cancer causes the blood to become thicker which can lead to a greater chance of blood clots. I will continue with the Fragmin. It’s like so many other things with cancer, you walk a tight rope because for every benefit (letting my bruised skin heal), there is a potential consequence (increased chance of blood clots).

Improved Feeling of Well Being

As I mentioned earlier, my last chemo treatment was a month ago. As the drug dissipates from my tissues, I’m already feeling better in a whole lot of ways. I can expect this to continue so “Quality of Life” will improve for a while.

  • I am already sleeping better, longer through the night, and waking up refreshed.
  • I am able to stay awake longer during the day.
  • I am starting to be a little more active so with any luck I’ll become stronger for things like standing up as I get out of chairs, picking things up and carrying them around while working in the kitchen, etc., and helping Janet carry groceries and the like.
  • My weight is starting to creep up a bit. Today I’m 56.4 kg (124.5 lbs) whereas two weeks ago I was 52.6 kg (116 lbs). It would be wonderful to put on more weight.
  • I can consume any adult refreshment without difficulty. Most of the time it is J.D. Shore but beer is starting to go down nicely. It’s not that I want to be slamminig back drinks but it’s nice to have a few rather than sip one through an evening.
  • My appetite is nicely recovered although I seem to be lactose intolerant and my GI is reacting to eggs with indigestion which is new. I love eggs so this is a bit of a drag but I’l do some experimenting soon. For now, putting on weight is more important to me than eating eggs.
  • I’m taking Tylenol 3 almost daily and finding it gives me the kick-start to be more energetic. I can also stay on my feet longer which is terrific as I work around the kitchen.

    I was a little concerned about becoming addicted but on reflection, that only matters if you have a future to be concerned about. Although I don’t plan to try cocaine, does it really matter if I did at this stage. I think not.
  • An annoying side-effect of the chemo has been numbness in my hands and feet. These seem to be less these days so here’s hoping it will pass. It makes it difficult to walk when on pins and needles all the time.

If you’ve been a regular reader of my ramblings, you will have heard me write, “We don’t get to choose all the roads we travel but we do get to choose how to be the best version of ourselves while on the ride.” A detour is just a simple hiccup in my ride and I plan to continue to find ways to savor every moment. Climbing into bed and waiting to die is not an option.

Upcoming Adventures

Here are some of my upcoming plans and perhaps you’d like a spot on my calendar to get together for coffee, lunch, or a drink.

  • Janet and I have a Staycation coming up on January 20th in Queensland. Our crew called the Funky Fun Loving Freinds, is a group of couples who enjoy getting together to eat, drink, joke, laugh and enjoy each others company. For the Staycation, we will be joined by the Stricklands, the Spencers, the Mitchells, and the Longs.
  • Not all our gatherings of the Funky Fun Loving Friends are so grandiose as a wekkend away. We plan to convene at least once a month for Pot Luck gathering, Wing Nights, Saint Patrick’s Day, etc.
  • Janet and I really enjoyed the High Tea event we did during our December Stay in QuĂ©bec City. I plan to use that as a model to host High Tea as a Birthday celebration for Meredith, her friend Erin, and the other O’Hara women on February 20th. This is a practice session for a High Tea on February 24th to celebrate Janet’s Mom Betty as she celebraters her 96th. birthday.
  • Janet and I are thinking about booking a train to MontrĂ©al at the end of March, staying in a fine hotel in Old MontrĂ©al, find a number of wonderful restaurants, go to Masses at Saint Joseph’s Oratory on Friday, Notre-Dame Basilica of MontrĂ©al on Saturday, and Mary, Queen of the World Cathedral on Sunday. We have some friends and family to visit while in the city.
  • I really enjoy hosting formal dinners and hope to have a regular schedule with family and freinds over the next while.
  • I’ve already been making video calls to friends I haven’t heard from for a while and will continue to do so.
  • The Stricklands are taking possession of Second Wind. I’d like to have all those arrangements made sooner than later. I hope to have a sailing season but that is in the hands of God.
  • We have a Family Reunion scheduled for August 17th. I have that on my calendar but only time will reveal if I will be there hanging out with the rest of the family.
  • Our Funky Fun Loving Friends are investigating booking a houseboat for early October and the planning will continue for that event.

So we plan to continue to live large and take joy in every waking moment.

As always, thank you for continuing as Support Pillars in my life. And may I continue to feel the presence of God during every waking moment.

Peace, Love, and Laughter

4 Replies to “Road Trip Detour”

  1. Phil,

    I always read you updates. I am praying for you and your family. For you to have the energy to fully enjoy all the family and friend time you have laid out. Sharing your journey is a gift that I truly believe every person who reads is touched in some way by.

    Lindsey ❤️

  2. The leaves change colors in October, and we are planning for plenty of photos on that Fall boating trip.

    The sailing season may end at haul out, but the houseboat will provide all the Fall colors as the backdrop.

  3. Nobody I know lives life as large as you do Phil-you continue to be an inspiration to so many.
    I hope and pray that you are able to complete your upcoming event list and start another.
    Take care,
    Rita and Ted

    1. So nice to hear from you. I am having many very special moments these days and look forward to more going forward.

      It would be great to get together for a meal soon.

      Lots of Love, Phil

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