A beautiful, “spot on” card that Paul received recently from a dear old friend from Bedford High school. “The Oak Tree”.
How appropriate as Paul just passed the one year mark from diagnosis and his Long Island incident, where it all started.
” “The Oak Tree”
A Message of Encouragement
A Mighty wind blew night and day.
It stole the oak tree’s leaves away.
Then snapped its boughs and pulled its bark
Until the oak was tired and stark.
But still the oak tree held its ground
While other trees fell all around.
The weary wind gave up and spoke,
“How can you still be standing, Oak?”
The oak tree said, “I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs, and make me sway.
But I have roots stretched in the earth,
Growing stronger since my birth.
You’ll never touch them, for you see,
They are the deepest part of me.
Until today, I wasn’t sure
Of just how much I could endure.
But now I’ve found, with thanks to you,
I’m stronger than I ever knew.”
try to remember that you’re stronger
than any problem you encounter
or any disappointment
life will bring.
Thinking of you,
believing in you,
caring for you.”
Thank you, Terri!
Paul continues to tolerate treatment quite well. His blood work is in order and he “checks out” nicely at his chemo and oncology appointments. Out of curiosity, we recently, asked to have his vitamin D levels checked. The chemo team agreed to add it to his last bloodwork and found it to be quite low. Not so uncommon for New England (especially in the winter) but also for a chemo patient. I started him on some D in January, just because it’s a good thing to do “up north”, then we increased the dosage due to lab results.
By the way, vitamin D is not typically checked with regular blood-work, but is a very easy add on, so just ask if you are curious. Vitamin D has a lot of important roles in our bodily functions and overall wellness and it’s not easy to get directly from our foods. A good one to look into, but not take high doses blindly. Although it is not common to have elevated levels, it is possible to get too much.
During chemo, which is now (day 3 of 5), he gets very fatigued and somewhat foggy but overall tolerates it well. He also has to stay well hydrated with good nutrition and a little help from “Colace” to stay “regular” – a known side effect of chemo. So far so good. TMI?
When I was little, Grammy always made a point to ask “did you go movie today”. At the time, we didn’t know what it meant, but we knew the right answer was “yes”. Today, we know Grammy was right on about how important it is to be regular.
Another symptom, somewhat unexpected but not so surprising, is what Paul calls “chemo – pee”, where he has to go to the bathroom often. A little more oversharing on my part. That short-lived side effect is small in the big scheme of things, so not too bothersome.
Sorry for the “potty talk” – Couldn’t help but share the facts.
As for chemo brain, it seems manageable and minimal. As a matter of fact, we have started playing some cribbage lately, especially on snow days. He has beat me 4 out of the last 5 games. I’m not sure if that speaks well for him or poorly for me, but I’ll give him the credit. Actually, I have trouble just remembering which way we are pegging on the board. I have a little jingle to help remember, “up the outside, down the inside”.
I like how some funny old memories come back with a cribbage game. We played a lot of cribbage with our grandparents growing up. I can still hear some of the things Grammy or Mom would say like “the jack of nobs” or “fifteen two, fifteen four, say no more”.
Paul is doing well on his new lifestyle of decreased carbs and balancing his diet. He is proud to be down 15# and weighing in at 235ish (+ or – depending on the time of day, what he has on for clothes and if the daily BM has occurred). Oops, maybe another overshare – LOL. What?…… everyone poops. Paul just doesn’t really want anyone to think that he does – very private – leave it to me to announce it.
If he keeps up his good nutrition behavior, we may end up back where we were when we were first married at 100# apart. Hopefully, we can keep the height differential the same at one foot (6’6” vs 5’6”). We all know what happens to height as we age. Yoga should help that.
We are also trying to incorporate some simple daily detox methods: lemon water to aid digestion and support liver function, loofah to sluff of dead skin cells and stimulate lymphatics, and exercise to a level of “breaking a sweat”. I even try to get him to avoid deodorant on occasion but he’s not such a fan. If you ever notice Paul w BO (I doubt you ever will), I’ll take the blame – I talked him into going without deodorant. I am just looking to get rid of toxins and support the natural detox systems. Step by step. Little things I know can make a big difference. Just trying to help without being annoying.
His work is going well and he continues in his District Manager roll, driving all over New England, visiting customers and vendors regularly. I’m sure there’s more to his work, but I’m somewhat challenged to know exactly what he does and to keep track of where he is. Kind of like “where’s Waldo, but where’s Paul”. His mother just laughs (with concern) when she asks me where he is and I don’t know. Usually I just know which state he’s in then learn of his earlier whereabouts at the end of the day. We text or call now and then, so I’m not a totally negligent wife. Big Paul really doesn’t want me hovering, so I don’t.
Over this past weekend, I read back to some of my journal entries from last spring. Some of the writings brought me tears while others brought great laughter. As Paul heard me snuffle and read him parts of last spring, he would say “You alright ?” in a sarcastic caring way.
I thought it appropriate to share a couple heartfelt and funny stories:
reflections from a year ago:
“grumpy roommate guy peeing on floor”
Wednesday, March 30th, I had “the phone call” from one of Paul’s bosses around 11am.
I still remember standing in the kitchen with Jack and saying to him, “we only know DaDa has a plum sized mass in his brain, but we don’t know if it’s malignant or benign. Barely holding back the tears I managed to say, “Just know, that no matter what, we’ll be ok. I do know that. God will be with us all the way.”
After packing a quick small travel bag, I was promptly on a plane by 1pm. I flew to Pennsylvania and hopped on a puddle jumper (Jack calls it a “pond skimmer”) to get to Paul at a hospital in Long Island. Usually I’m not so keen about small planes, but I figured, “what else could go wrong today”?
I arrived in the early evening and another one of Paul’s bosses drove me to the hospital. It wasn’t long before Paul asked me what time I was going to the hotel. I thought “what hotel”? “I’m not going anywhere, Im staying here with you and will sleep right here in this chair.” A super nurse practitioner didn’t even question, she just went and got me this great convertible chair, a pillow and a blanket.
In the middle of the night, the grumpy roommate was wheeled in. He knew his medications well and liked them. He also talked loud, swore a lot and was not happy he had, not one, but 2 roommates.
“I’m not paying for that extra roommate, why am I in a room with so many people?”
I just pretended to sleep through the whole thing. Paul and I peeked at each other from under the corner of our covers rolling our eyes and quietly giggling. Poor Paul with his bandaged head and bloody pillow, just glad to be conscious.
In the middle of the night, I hear the roommate rustling around and getting out of bed. Seemed to be trying to get to the bathroom, not realizing or caring that he is tethered to poles and beeping machines by multiple tubes and lines. From my chair- bed I peer out from under the covers with concern just in time to get the “full monty”. I ring the bell and a nurse comes in just in time to see him peeing all over the floor.
“what are you doing?”
”I had to go to the bathroom”.
“Why didn’t you call or use the urinal?”
”I didn’t know and I didn’t care, I just had to take a p – – s. I’’m going to sue your ass. You just wait, when I get out of here. Do you know who I am? My lawyer will be calling.”
“Yes Mr. So & So. I understand, we’ll talk about it in the morning. You’ll be ok. See if you can get some rest.”
“Do you know what happened to me? “I was in a bad car accident. My car mechanics failed and no safeties came on, I crashed and my steering wheel split my chest open, broke my ribs and ruptured and tore my aorta. I should be dead. Get me some more morphine or percocet now.”
“Yes Mr. So & So. I understand. I am so sorry for your troubles. You are in good hands. It’s not time for your medicine, you just had some, but I’ll be back when it’s time. See if you can get some rest”.
Paul and I were wide eyed. (Ok I was wide eyed, he was concussively droopy eyed). He now tells me he remembers none of that. Just as well. Maybe it all was a dream?
The nurses were so calm and kind. I was totally impressed.
We didn’t sleep much that night, wondering and waiting for tests and results and plans. The next day Paul was scheduled for a full body PET scan to confirm if his brain tumor was primary or secondary(metastasized from another body region). Fortunaltey it was primary and that one thing was ruled out. Next was to figure out if it was malignant or benign – that had to wait until after surgery to confirm diagnosis and what treatment would follow.
Fortunately, we were moved the next day to a lovely private room with a pullout couch-bed for me. So, no more roommate stories from New York. We drove home to Maine on April Fools’ Day.
Another story from the time of radiation treatments back home in Maine in the late spring/early summer.
“her husband has a brain tumor”
With 6 weeks of radiation, 5 days a week, you started to see some of the same faces in the waiting room. There was one older lady who was usually there with her husband. Very kind and very religious. I know this because she made it her business to ask everyone who they were and what they were there for. then proceeded to tell us all about her prayer group at church, asked each patient by name so she could add them to the list.” Don’t get me wrong, prayer is powerful and I feel it has been an integral part of my life and a strong presence in Paul’s journey.
Her approach often felt invasive and we avoided the contact when possible, but one day the inevitable happened and she caught my eye and my ear. She wasn’t very good at whispering, not that it would matter in that cozy 6’x10’ waiting area. But we could all hear her over the “Andy Griffith Show”. She went right for the jugular,
“what’s your husband here for?”
“He has brain cancer.”
sadly with a moaning, end of the world, pity, “awwwwwww”
“How bad is it? What’s his prognosis?”
Paul was sitting right next to me, listening as she poked and spoke like he wasn’t there.
Turning to her then Paul, I say, “You can ask him.”
So she did and he kindly shared the basics without too much detail, then returned to his magazine.
She turned to her husband and whispered very loudly, “Her husband has the brain cancer”.
Paul and I looked at each other, rolled our eyes and tried not to laugh. We certainly rolled with laughter once we hit the elevator, repeating in a forced fake whispering voice, “Her husband has the brain cancer”.
Fortunately those days of early intense treatment are over. I think I would forget a lot of the details if I hadn’t journaled along the way.
Fast forward to today:
Jack and I had a few whirlwind days of college visits over his March break. What a fiasco planning and scheduling that. The snowstorm canceled all of it so I got to redo and consolidate it – lucky me. We certainly learned how to utilize public transportation. The craziest part may have been the 3am bus ride from Portland to Boston/Logan airport. I barely dared tell Paul the plan. He did think we were a bit nutty. Jack and I had our first Uber rides around Phillie and DC. We were very impressed with the system. We also Amtracked between Phillie and DC, which I thought was terrific. All in all, it was probably more fun than I anticipated. Actually quite bonding.
Ben was also home for a week. He got some much needed rest after a very successful first hockey season @ UConn.
He’s enjoying his classes and glad to have a little break from hitting the books too.
It was terrific having the boys home and cooking for them, staying up late and laughing with/at them. I even enjoyed the loving sarcasm and banter. Isn’t it funny how most mothers love to cook for their kids and if they don’t eat and enjoy the food, it feels like they don’t love you? or something like that. Twisted system but ongoing through the generations. I know it’s one of the ways I love to show my love for the boys (and my man). Grammy always said, “take care of your Man”. That’s what I’m doing, Grammy.
We seemed to miss the boys even more than usual this time when they went back to school. They sure do bring extra life and light and energy to our house and our life.
I had a health coach conference in NYC last weekend at Lincoln Center. One of the featured guest speakers was Dr Andrew Weil – one of my all time favorites. My honey accompanied me to the city. He found us great lunch spots and escorted me to and fro daily. He rented a bike to ride around Central Park one day then met a friend from high school for a beer/coffee. We went to the superb broadway show” Chicago” and walked around the city. We drank in all the sights and senses of 5th avenue, Times Square, Rockefeller Center and Central Park. Poor Paul ended up with a giant blister on his toe, well earned. We clocked five to eight miles a day. The Amtrak ride from Boston to NYC was a breeze. Although, I am not a fan of the cab ride to the train station or Penn Station itself. It was absolute uncontrolled chaos. We came through unscathed and would probably do it again.
This weekend we are happily home. With the April Fools’ Day storm, Paul and I took advantage of a little end of season outdoor time. On a walk around the neighborhood, we visited this great snowman/woman.
We also had an invigorating snowshoe round at the Audubon. It feels good to be local for a weekend, especially the midst of this chemo cycle.
We are very happy to lay low and hang out together.
Only two more rounds of chemotherapy. He should be done around Memorial Day. Yippee!
Happy Spring! The Easter Bunny will be here soon.