” The Oak Tree”

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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.”

Especially now,
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!

Update:
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”?IMG_4506

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:
IMG_5966Jack 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.

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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.

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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.

IMG_6024I 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.
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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.6FA03276-3699-4B25-B070-B5050A004172

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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! IMG_5959

Happy Spring! The Easter Bunny will be here soon.

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“Rounding the Bend”

“Rounding the bend”…….
Paul’s words for where he is on this cancer treatment journey.

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This is Paul in his new reading glasses. We were at the coffee shop and he realized he had forgotten his at home so he went to the local drugstore. When he came back, he asked me if he looked more like Brooke Shields or Foster Grant. I guess they are  Foster Grant’s but there was a picture of Brooke there. I told him he looks more like Kevin Costner in Hidden Figures. Way more yummy.

 

He just finished round nine of chemotherapy. Three more to go. He will be done by the end of May. Then it will be ongoing scans at regular decreasing intervals: every 2 months then every 3 months then 4 and then 6 indefinitely to keep a watchful eye.

It’s the same story with tired and foggy during the week surrounding chemo, then he recovers for a few good weeks before the next round. I asked Paul how he felt this morning and he said “like I just finished five days of chemo”. Understood. Even the Oncology doctor commented, “so besides me poisoning you every month, you’re doing pretty well?!”

The house gets kind of quiet when the phone call comes from the drug company to set up chemo delivery. Fortunately, we have times when we forget that anything’s happening, but then some “buzz-kill” calls and reminds us that my husband has brain cancer and it’s time for treatment again. Time flies between treatments, but soon this leg of the journey will be done.

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We are grateful for the treatment and to know something is being done to prevent the cancer return. But at the same time, I worry about the toxicity of the medication and what it’s lingering effects may be. The Chemo doctor assures us that the worst possible side effect would be a rare blood cancer. Key word is “rare”.

Another quiet time is MRI day which comes along every two months. The house actually goes silent with a hint of tension. Even though my predominant feeling is that nothing new will show up, there’s still that lingering possibility of regrowth in the back of my mind that I just keep pushing down. I’m sure suppressing these feelings or any others has nothing to do with my recent TMJ flare up. (wink wink).

Luckily, at the oncology meeting this week, after the MRI, we were able to breathe another sigh of relief. No changes to his scans and no sign of regrowth. All good news.

He truly is doing very well. Better than many have expected. You can tell by the questioning side glance from the medical staff (and his wife – that’s me). We just want to be sure he’s serious and there’s no conflicting body language that goes along with his simple unbothered no-nonsence, “let’s move on” responses. I think he’d opt for “drive thru” doctor visits, if they existed, just to avoid the cancer/chemo discussions. He truly is a “no-fuss” guy. Fortunately things are on track and extra discussions and questions aren’t really necessary. Our appointments are so brief, Paul says we are the ones that allow the doctors to get back on schedule when they are running behind. I am trying not to over-observe or coddle him. He’s a grown man who seems to be back “on his game”.

Paul continues to work full time without looking back. I just “turn him over to God“ every day and am very pleased to see him come through the door at the end of the day. He drives all over New England, spending most of his days in New Hampshire and Massachusetts.

He has returned to being his old “pooper scooper” self like he was in the 90’s. If you leave a cup or plate unattended, it disappears to the kitchen. And after meals, everything gets cleaned up promptly. It’s quite nice unless he takes my unfinished cup of tea. He’ll have his hands full with the boys home on vacation.

He remains true to his low carb diet and has lost 10# in the process. He said he feels good, has more energy and needs smaller jeans. We talk about other anti-inflammatory measures but are trying to keep it simple and doable without feeling too deprived in the process. One step at a time.

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Paul had a birthday in February. He’s now joined me at 52 years young. I found it somewhat stressful trying to find a way to celebrate his life and show him how much I truly love him and how grateful I am to still have him after this crazy last year.  A trip around the world or a lamborghini would have been in order but not very realistic. So I settled for a special dinner at home (using the fine china & crystal, candles etc..) with a couple friends and a heartfelt love note.

We spent last weekend in Boston just chillin’ between hockey games. Literally chillin’ with some of the coldest winter weather of the season. UConn played Northeastern (my alma mater) in the first round of playoffs. The two husky teams played two very hard hockey games. Even though we lost, Ben had a sweet goal in Friday’s game. Thank goodness for personal victories in the midst of defeat. And ……Jack and I got new sneakers from the Nike store. Good for us!
So now Ben will actually have a spring break, which would not have happened if they made it to the finals. Bitter sweet. I’m sure Ben would have given up his break to play in the Hockey East finals.
We also had the pleasure of seeing some dear friends from Paul’s hometown at the games and we connected with a few entertaining college friends. I love the silver linings. Paul stayed up way after his bedtime, especially during chemo, but for good reasons. It was a treat to stay in the city and have a place to rest during the day without driving back and forth.

Jack’s home for a few weeks on his March break. We are planning some college visits. What happened to those days when we applied to a few schools and maybe visited one or two or not until after we were accepted? Now we make mini vacations of it, visiting multiple schools in multiple days. Is there a way to make this feel less daunting? I think I need a travel agent just to plan it all and then a driver to shuttle us around. “Planes, trains and automobiles”. “Yippee…… road trip!”

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Spring is coming, I know it to be true from past history. This can be a tough time of year. I often call it “mental mud season”. Sometimes, I just want to sit on the couch and watch the bird feeders with a nice hot cup of herbal tea. Thats my “happy place” lately, and its warm. I’m done with this season. I’m not having fun anymore – no good snow for snow-shoeing, too cold and windy for outdoor anything lately. Five degrees today and crazy windy. If we get a good storm to allow some more snow fun then I’m in, otherwise, lets move on into spring. As Grammy always said “this too shall pass”. Thank goodness for Grammy messages in my head.

Lets just keep focusing on the positive, celebrate the mini victories in life and enjoy simple pleasures. Every day is a new day and we continue to move forward.

As Pooh says “TTFN” (TaTa for now).

Be well, stay well!
Love to all!

 

Eat, Drink & Be Merry

That sums up our holiday. The crooked christmas tree tipped over, we straightened it up, swept up a few broken ornaments, wired it to the window and kept going. The symbolism of that tree seemed to live on throughout the holidays. The day it went out the back door was a good day. All in all, Christmas and New Year’s was very fun-filled with family, friends and festivities but now its time to get “back on track”.

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Paul and I are doing a carb challenge for January. I’ve always known about the ill effects of simple carbs and sugars, but after my year long Health Coach training I’ve been inundated with compelling evidence. The correlation to disease and illness is undeniable. There’s great lifelong value in the anti-inflammatory diet. So we’ve decided to curb our food weaknesses for awhile then hopefully find a place to continue with less of these things in our diet. Something like the 90:10 rule. 90% of the time eat well and avoid evil foods, then on occasion, 10%, allow ourselves to indulge.

“the spirit is willing, but the flesh is weak”(Matthew 26:41)

For me, it’s about homemade cookies. I know exactly where to go and who makes the best ones. Sounds like illegal drugs. LOL. There’s a great deli uptown that makes killer chocolate chip cookies. I usually eat one while I wait for my sandwich, then have a few more to go (which may or may not be shared at home). And then there’s the truck in the back corner at our local farmer’s market. She makes giant irresistible oatmeal raisin cookies. I also have a dear friend in Massachusetts that makes the best thin frosted/sugar sprinkled cookies in the whole world. More like “crack” cookies. You can’t eat just one, and you dream about more when they are gone. She gave us a full plate of them at Christmas and I think I ate them all myself. I may just need to find “a meeting” today to keep my hand out of the cookie jar. I’m already dreaming about heart shaped cutout cookies for Valentines day – hmmmmmm. For now, I will resist. I know its better for my health not to partake and I feel better overall. My “skinny jeans” fit a little better, I have less sinus congestion and I have improved balance in my energy and mood (the morning angst is significantly less).

As for my honey, he’s a bread and pasta man. Breakfast sandwiches, bread & peanut butter snacks, crackers n cheese and thin spaghetti or mac n cheese, the one with the gooey cheese package, not the powder.
He says he already feels better (when he’s not doing chemo) and has lost 5#. I also notice he’s less puffy from fluid retention and he gets less “hangry” by keeping more steady blood sugar. We are eating more nuts and fruit, and homemade breakfasts. We also eat dinner earlier to avoid the big snacking window in the afternoon.

Usually I feel uplifted and excited for a new year, but something about this one felt different. Maybe a bit daunting at times with some heavy thoughts. I had some darker moments transitioning into 2017. I knew the years without cancer in our world were gone. Looking in the face of cancer treatment, many unknowns continue and “so is life” for us all. Somehow, my fairy tale mind thought this would be all over when the holidays ended. Hmmm it’s still here. We are still on this cancer journey, but without the “eat drink & be merry” to make it feel less.

Some things don’t just go away. We can’t check it off the list- “yup, did that”. Nope, it doesn’t work that way. Treatment and surveillance continue while the possibility of cancer regrowth lurks. It needs to be watched and managed like a chronic illness.
The current cancer treatment of chemotherapy will end in May and life will go on. We need to continue to do our part in conservative measures with diet and lifestyle. We will focus on doing what we can to stay well. I will continue to encourage my man to be active, eat right and stay well (without nagging). He’s usually pretty good and only needs an occasional reminder.

I say “we” a lot because we all know that “cancer is a team sport”.

So, we need to stay positive and focus on today. I tell myself: “Remember God is with us. There is a silver lining, it will be unveiled bit by bit. Stay open and let the light shine in. Stay strong, be brave!”   Nothing can steal my “Merry”.

                                  Our aunt from California sent this fun hat that helps too. img_5838                                                          But it doesn’t have ears – LOL.

There is truly soooooo much to be merry about, it’s just where we decide to put our energy. Things could be sooo much worse.

Paul just finished round seven of chemo and did very well. Mid treatment, we even traveled to a hockey game in Hartford, met some old friends for lunch and drove home in a big snowstorm. Thank goodness for Big Paul’s good driving and great focus. I just watched the “Waze” app on my phone to tell him where the traffic and accidents were while Jack helped distract me with stories about his evolving world at NMH.
Paul still gets tired and a bit foggy from treatment, but overall he continues to tolerate it well. We call the week after chemo his “hangover” time.

His bloodwork continues to be normal and his recent MRI has “stabilized” (oncology doctor’s words). There were no new developments or changes to his MRI. This is good, very good! The previous scans were showing increased white around the tumor resection. They were watching this to be sure it wasn’t cancer regrowth. Sadly enough, scar tissue and cancer/tumors look a lot alike on MRI., so they’re never quite sure which it is. Now she feels more certain that it is scar tissue from radiation and chemotherapy.

Paul has returned to work full time and feels good about that. It seems to be good for him. I just hope he can maintain a healthy balance with wellness/fitness and work. He continues to drive around New England every week and even has an occasional overnight. Last week he was in Presque Isle for a couple days. I don’t mind a little alone time in the evenings, but I do miss him when he’s gone. The flannel pajamas and smart wool socks come out in full force when he’s gone overnight. This is when a warm fluffy dog could come in handy. Actually, we are in no hurry for the expense of a new dog (time and money).

We come into this new year being busy with work, focusing on wellness and keeping track of the boys in their respective worlds. They make our life complete and we are so very grateful for them.

 Frozen Fenway

Frozen Falmouth

Happy New Year!
Be well, stay well!
God Bless!

Heres one of Pauls favorites – Enjoy! “My Church” by Maren Morris.                                   “Can I Get an Hallelujah?! Can I Get an Amen?!”

The Crooked Christmas Tree

Maybe not “full-on” crooked, but definitely tilted.


Paul actually went and bought the tree and managed to put it in the stand in the house all by himself while I was shopping with my Mom. The smell was glorious when I came through the door. I was grateful to have it done and amazed that he was able to do it alone and that I didn’t find him lying under it. I know he has some trouble with dizziness if his head is down for very long. so… phew.
It is a bit slanted, hint of “being off” or just a little different. (I am talking about the tree not Paul). That crooked christmas tree is just like our “new normal”.
I love the symbolism. We tweaked it a little, but decided to leave it and not work too hard at making it perfectly straight – just like our life with cancer.

This makes me think of Paul’s voicemail. The first time I called his phone and heard his old voicemail, it was surreal. I had this funny feeling about how things used to be. Knowing this message was recorded before cancer, it made me hesitate. I paused with a surge of mixed emotions. Although he’s really not much different, I know of that time when we were just motoring along and taking life for granted. Each time I call and get his voicemail, I still have this dejavu feeling. Hmmmmm, “I vaguely remember then” and how things used to be. Besides knowing there is cancer in our lives and managing the treatment and effects, it’s all good without any major complaints. But the awareness of life’s fragility is ever present.

I like the freedom of accepting that things are not perfect and learning to be ok with it. The pressure is often lifted from the busyness and a tendency of keeping up with the details (and the Joneses). I just don’t have the energy for it and it is welcomed to “let it go”. Everyone seems to be more accepting of our imperfection also. Thank you. Ahhhhh, if we could all “cut everyone some slack”, like they had cancer? Ponder ponder.
The christmas tree isn’t perfect, neither are we and neither is life. It’s very freeing to be able to cut the pressure of chasing perfect. Life is much less exhausting with this in mind.

My tough guy super hero is going strong. He just finished round six. He is half way through with six more rounds to go. Three days of chemo would be better, maybe not so bad, but five days of chemotherapy sucks.
After a day or two I think it’s tolerable. But then at day three we think, “okay, this can be done now”, but it just keeps going. He gets very tired and “yucky” feeling. Hard to describe, but he says by day three he feels flat and I notice the house gets quieter. The effects linger for the better part of a week after he takes that last pill. The best management is early to bed most nights and some rest in the afternoon when he can fit it in. He says to tell everyone,”overall I’m doing ok”. He always has been a man of very few words.

We just came from a “Brain Tumor Group” meeting this week. It’s a monthly meeting where people living with brain cancer gather, along with some spouses/significant others and the specialized nurse navigator. It can be very sobering as you listen to people’s stories about where they are, where they’ve been and what’s in the future (knowns and unknowns). You can imagine how there’s a full spectrum of thoughts and feelings. I left with a heavy heart for those in the throws of it, grateful for where we are and a hint of nervousness about what may be to come. There continue to be many unknowns about whether or not the tumor will grow back and what the side effects from treatment might be. There is the tremendous upside of how effective treatment has been so far and the possible downside of the surgery, radiation and chemo “down the road”. For now, the place to stay is focused on the upside,“in the present”. “So far so good”. We’ll continue to put our energy and thoughts into doing what we can to make this all work for Paul’s best in the present and the future.

Paul keeps walking, even in the cold weather and gets to the gym a few times a week. He is dedicated to staying active. God love him. I am so incredibly proud of him. I totally admire his management of this situation. I still think I’d be crying if I were him.

I get a little angry or anxious as I feel the chemo treatment time approach. Paul agrees and says it sneaks up on him. “Really, is it really that time again”? We just have to pause and breathe. Press the reset button again and again, accept it and keep going. Kind of like Dory in “Finding Nemo”. “just keep swimming swimming”. I’ve been known to resemble Dory on occasion with her playful yet forgetful personality  (not to be confused with dippy – ok maybe a little on occasion).
Actually, I was in a little shop in Freeport last week getting bows for my wreath and lamp-post outside. Standing at the counter with the owner, I mention with enthusiasm that she plays all my music. Thinking maybe we are “soul sisters”. She says, “thats funny, I don’t usually play music with words/singing. Actually I don’t think that’s mine”. We look around curiously, then as I pull my wallet from my pocketbook, I realize that my phone has been playing my music and following me all around the store. LOL. Like Dory thinking Nemo is following her around and she keeps running into him.
That wasn’t the point, but a funny moment anyway. My point was that I can be forgetful. I’m usually well engaged and present in the moment, then often forgetting the details or even the whole event itself. Not sure if it has to do with stress or middle age or undiagnosed AD, but whatever it is, I accept it, write lots of notes and laugh instead of being embarrassed by my poor memory (most of the time).

Fortunately, Paul has a great memory and has been filling in the blanks for me for years. He can tell you the details about our ”first kiss”. I just remember standing on a curb in Boston, seeing eye to eye and the magic. He says that actually wasn’t even the “first” kiss. “ Whutt,Evver!” Maybe that hazy moment in 1986 has to do with the “happy hour” at Kenmore square’s “Who’s on First” or “Cask n Flagon”.
I’m still very grateful that this cancer has not taken my husband’s memory. What would I do without my sidekick memory bank. In our first meeting with neuro-oncology, I commented to the doctor, “please don’t take my husband’s memory”.
img_5724     The wonder and hope and joy in Advent and Christmas fills me. I feel less focused on “stuff”. Trying to stay grounded in the true meaning of Christmas on a daily basis. Avoiding excess shopping. When I hear myself say “I should” or if I think I need to head out to do “one more thing”, I pause and think twice “is it truly necessary”? I just try do what I really need and want to do and go to bed early when I’m tired. Paul and I are often in bed by 8 – giggling about our little old selves. I know our rest and self care will keep us well and able to attend to what’s most important – wellness, family and work..

 

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(photo of our niece Lily as Mary in her pageant).

I continue to draw from my faith, especially during this holy season. I like staying connected to the Blessed Mother Mary. I feel great strength and comfort from her. I always have. From the day I was in labor the first time and had an image of her giving birth in a manger. I knew if she could do it, then so could I. It was a spiritual miraculous event that I couldn’t believe women were not singing and shouting from mountain tops about the wonder of it all.

I always admired and resonated with how she accepted and actually welcomed the pregnancy and challenges of mothering. She supported and loved her son as he followed his purpose.
What an amazing lesson in “letting go”. In some ways her world was much bigger and more complicated than ours, yet more singleminded with clear focus in others? She wasn’t getting texts from her wandering child Jesus as he set out on his next trip across the desert to perform miracles or through the mountains. We are much more connected to our kids. Which can be good and bad. The dynamics are so very different. We certainly can complicate parenting, especially with this cord that never seems disconnected. All we really have to do is gently support our kids, helping them find their purpose and follow their lead. “Let them go” gently supporting from afar as they find and pursue their own journeys. It’s not easy to do, but most of the time, we just have to “get out of the way”.
“Let Go & Let God”. “Trust and see”.

With the boys off on their own journeys and Paul working more and “holding his own”, I seem to have more time and energy to put into my work. I’ve always worked shorter days with kids home and Paul traveling. I liked being able to do that. Now, I have opened my days a bit, working a few more hours. It’s busy at times, but very good. I love my work and feel very fortunate. I feel so lucky that my patients and clients share their lives with me and invite me in, trusting me to help them with healing and wellness.

Paul voiced his appreciation for being back to driving and working. He feels it has been very good for his mind. I can only imagine how important it must feel to be “back at it”. A welcomed distraction for him and healthy cognitive work on a daily basis. He works at least 3/4 time of his previous schedule. He continues to drive all over New England visiting customers, vendors and going to meetings. He also spends a good amount of time at his office “the coffee shop”.

Paul’s hair is growing in a lot more. Still thinner in front where the radiation was. He looks like he has a mohawk if he goes too long without a trim. I try not to be a pest, but sometimes he needs reminders that it’’s time for me or Supercuts. I think I really have lost my haircutting job – he usually opts for Supercuts. It’s growing in very dark and quite soft. It feels good to rub, which I do even more now that we don’t have a dog to pat and love. LOL. He’s very tolerant and humors me.
His sweet aunt from California says he looks a bit like Tom Cruise in “Jack Reacher”. He is handsome, but Im not sure about that association. I’m going with it.
Paul and Ben had a recent knee-jerk post game conversation:
Ben,“Hey Big Guy, I see you are growing some hair now”…….pause.….”kind of looks like you got hit with a shovel”.
We all cringed and laughed. Paul promptly replied….. “well yeah, you could say that, I kind of did”.
The L shaped scar from surgery does resemble the angle of a shovel. God love the honesty and wit. And for Paul to allow himself to be the center of a good laugh.
Imagine what the poor lady at supercuts thinks. He didn’t even tell her about the origin of his scar. She must think he really did get hit with a shovel.

I recently heard this song in church and it plays over and over in my head. I actually downloaded it from iTunes so it plays on my phone and it even plays in the little shop in Freeport. LOL
🎶”He never failed me yet”🎶
“I will sing of God’s mercy. Every day, every hour, He gives me power.
He is my God and I’ll serve Him. No matter what the test
Trust and never doubt. Jesus will surely bring you out, He never failed me yet.
Trust and never doubt, Jesus will surely bring you out, He never failed me yet”🎶

Although life deals us hard times, God is there to guide us and sometimes even carry us through. We just have to remember to ask and be open. He is always there, I know it to be true. Sometimes, I don’t even pray, I just ride on the reserves I have built up over the years of prayer and faith. Early on, when cancer was new to us, more confusing with more unknowns, I remember that I couldn’t really focus or settle down enough to pray but I sooooo knew my God was there for me. I felt loved and supported and so very grateful that I had saved up this faith filled soul of love and support inside myself. Not to mention the extra comfort and love we felt from prayers that we were being surrounded by from friends and family too. Thank you all, we are forever grateful.

We are celebrating all our victories along this journey so you might have to listen/read a little bragging along the way. Today’s highlight is hockey.
We’ve had some big crowds at the recent local UConns games: BU and Lowell. Paul thinks they’re all there to see Ben play, but I reminded him they’re also there to love and support him.

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At the BU vs UConn game, we had dear neighbor friends, college friends and grandparents. Paul and I went in 2 cars with Jack and each set of grandparents then we all had a fun“sleep over” at Mimi & Papa’s.
Mammy and Pappy are not big city fans, but they willingly agreed to “give it a go”. Jack and I took them into Newbury Street for dinner before. God left a parking space open for us right in front of the restaurant with just enough room to squeeze my car in with no room to spare. My parallel parking was less than stellar but “got the job done”. I think Dad would have been just as happy having a hotdog at the game.
After elevator rides and mouse maze trails through the Agannis Arena, we descended the steep stairs and arrived in our rink side seats. Paul and I escaped to the lobby for a celebratory brew. It was rather emotional as we watched the introductions, listened to his name “ tonight’s starting line up with Freshman Benjamin Freeman as Center”. Absolutely amazing to feel the reward for his hard work and dedication.
For fear of “flood gates” without kleenex, I dared not make eye contact with my Dad or mother in law (we are the 3 softies in the group). We stood proudly for the national anthem, gratefully eyeing our country flag and watched our boy stand on the red line with his team mates. I was flooded with emotion as I stood with 2 sets of well and able grandparents (all in their 80’s), our tall handsome Jack home from school, my honey surviving brain cancer and supportive and loving friends. I just took a deep relaxing breath and said “Thank you God”. We waved our blue and white frilly fleece scarfs that Mimi made us and we cheered on the huskies to a whopping 4-0 win. I felt like we had an early thanksgiving celebration and the turkey hadn’t even been served yet.

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A couple weeks later at the Lowell game, the crowd grew even more with family and friends. It was actually overwhelming at times (in a good way). This journey is an amazing roller coaster ride of ups and downs. Thank you all for adding to the ups.

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I went to my first home game at UConn – they play at the XL Center in Hartford. Paul’s been a couple times. That was very exciting, but I was disappointed that we never got on the “kiss cam”. LOL. Maybe next time.
Last weekend, Ben scored his first goal against Amherst on NESN. That was amazing. Paul was mid cycle chemo so we were at home watching on TV. Our phones exploded – it was like Christmas came early too. The poor kid has been killing himself trying to score and it finally happened. One of my brothers called me awhile ago and said, “I can’t believe he hasn’t just picked up th F’n puck and thrown it in the net”.

 

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Ben just arrived home today and Jack will be home this week. We, like most of you are soooooo looking forward to some cherished family time. This is the longest we have ever been without our boys home, so it’s time. I just bought BIG groceries like I have not done in months.

I’ll close this longwinded post with a a few lines from my other new favorite song. I often listen to it as I walk in the morning. This too, helps me stay grounded.

“Give me Jesus”.
“In the morning when I rise, in the morning when I rise, in the morning when I rise, give me Jesus. give me Jesus. You can have all this world, give me Jesus.”

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God Bless and Merry Christmas!

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“We Ain’t Kids No More!”

img_0280“We ain’t kids no more
Adele said it best in her new hit song. The refrain plays over and over in my head. “We ain’t kids no more.”
Adult issues like brain cancer, kids going off to school and losing your dog of 11 years are some big real life issues and changes that bring us into another level of maturity. I know you all could add to this real life list and you can relate. Certainly, not everyone gets brain cancer, but plenty of you have had your major medical and Big Life issues to deal with.
Whats interesting is, I still think other people’s issues seem worse than ours and I sense the same thoughts from others. I had a recent question from a neighbor friend, “how are you guys doing? It must be really hard living with brain cancer, the boys being gone and now the dog dying?” Well when you put it all together and say it like that, it doesn’t sound so good, but when you are in our house, it’s not that dark or heavy.

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When our dog, Izzy passed from kidney failure a few weeks ago, I certainly felt bad for us and it was hard, but I also felt bad telling people, because I knew they would feel really bad for us. “Oh my word, now their dog dies? You’ve got to be kidding me”. Paul and I had some twisted face hesitant house chuckles on that one.
Saying goodbye to Izzy was quite dreadful, but the pain is less now. We just shook our heads, dusted off again and are focusing on the bright side (saved time and money – grooming, food, vet bills, planning dog care when traveling etc..).
We still feel like we are supposed to be taking Izzy for a walk or filling her water bowl. I even remind him to let her in before he leaves or ask him if he’s going to walk the dog, then promptly say, “oh right, we don’t have a dog”. Fortunately he can appreciate my humor.
At least now I know when Paul says “Sweetie” that he’s actually talking to me not the dog. I’m moving up on his love list.
The house was empty before with the boys gone, but now it’s really empty. It’s harder to stay up at night without her lying next to the couch. It sure does seem funny not having her greet us at the door. Paul misses her head on his knee when he sits with a little bowl of nuts or cheese and crackers. The neighbor cat is glad she’s gone. Now she can hang under the bird feeder and wait for lunch.
I realize that I used to blame a lot of house noises on her, now I realize just how much our house creaks and squeaks. Best to just go to bed early with my honey where I’m safe. Thank goodness we really like each other or this empty empty nest would be a hard thing to do.

Paul continues to do quite well. My miracle man. He just signed off with the radiation doctor. After a few questions, we gathered some valuable, yet, not so new information. “Is radiation a “one and done” deal or do you sometimes do it again?”
Radiation is a possible future repeat treatment if necessary for disease progression. If it grows back in a few months, then they would not repeat so soon, as it would be deemed an unsuccessful treatment. If it returns in a few years, then it would be reconsidered, along with whatever other medical advancements may be “on the table” at the time.
“We hear everyone say “when”, but never “if” it grows back”?
This type of cancer does tend to grow back. It could be two years or ten years, we don’t know. We do know that the molecular makeup of Paul’s tumor makes it more receptive to treatment and your prognosis is better because of it. And studies show that the combined chemo/radiation treatment is the best treatment option at this time. After his last chemo treatment next May, he will be on surveillance. Sounds like a security camera, which is actually quite appropriate with regular MRIs.
So that conversation could make one feel better or worse depending on if your cup is half full or half empty. Im going with the over. And again we say, “Long Live Big Paul”.

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Last Wednesday was a day long of medical tests and doctors’ appointments. He had an MRI at 7am @ Maine Med, followed by the neuro-oncology doctor to read results and check in. Then blood work and chemo doctor in the afternoon.The MRI shows a bit more scar tissue, which again is indicative of the “treatment effect”. The increased white area is what they are watching, as it has a similar look to cancer regrowth, but everything seems to be going as planned, so they assume it is scar tissue. She gave him the okay on a few more work hours, so now he is up to five six hour days. Dr Lu-Emerson thinks he’s amazing too. We also think she’s awesome, so we have this great “mutual admiration society”. We feel very well cared for by our super medical team. We are so very fortunate and grateful to have this tremendous medical care locally.

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So that big day of tests and such was on the day after election day. We just woke up, heard the surprising news and went off to the hospital. Paul’s in “the tube” while I listen to my headphones (an online class I’m taking). There’s a lovely lady from way up north sitting next to me knitting mittens while she waits for her husband. The front desk lady comes in, turns the dreaded TV on, which is fine, I just stay focused on my work. But as she walks by us, she makes a point to force eye contact on me and jump right into politics. “You know, Hillary is sick. I mean really” I realize she’s talking to me, not the sweet “mitten lady”, so I say,” excuse me”? and she replies, “I said really, she’s sick, have you noticed the last few days how she…….” trying to engage me. She’s lucky I didn’t throw “the cancer card” at her. (My husband has brain cancer, so I don’t give a rat’s ass what you think about politics right now). I thought to myself? WTF? but out loud replied.. “Oh, Im not doing politics right now”. Like I gave a shit what she thought about “Crooked Hillary” or any other negative thing she thought. This is not the time to be bashing the loser or anyone else. I hate the dark side of politics and strong opinions publicly flaunted. It’s like pollution or poison. It can be so divisive, its painful. I don’t care which side it is. I am just happy to push the reset button and move on. I will put it in the hands of God to guide our leaders and I will do my part to “make the world a better place” right where I am. As Paul would say “in my bubble”. Amen

Paul and I share a trait of conflict avoidance. We have many nights where we simply leave the political banter off, no tv, and just listen to Pandora. My work station “Jim Brickman”, often brings us peace and calm. We tend to cancel out each others vote but neither one of us interested in the conflict out there.

One more quick politics story, but lighter: Early this morning as Paul got up to pee (as most middle aged men do), I blurted out, “I was getting high”. Confused by my outburst in the dark, he said, “what?” “In my dream, I was smoking pot – it was the craziest thing”. And my witty man said, “at least it’s legal now”. LOL No thanks. Fortunately, we went back to sleep and nobody got stoned.

On a softer note… Paul’s hair. It’s growing back rapidly and quite dark. I think I’m about to lose my grooming job. I think he’s headed to Supercuts or the real barbershop today for the real deal. It’s been like “Barbershop 101” here. Learning how to trim eyebrows, cleaning up the neck line and around ears, then figuring out the right trim length to even out his hair. The back is much thicker than the front where he had radiation, so it has to be short enough all over to blend properly. I need to keep my honey looking good. “Look good, feel good”. Plus, I know people are checking him out to see if he’s doing alright. Somehow when you have brain cancer, I think people look more closely at you, wondering if “you are all there”. So we try to make sure there’s no question. People tend to look more inquisitively at him wondering if he thinks clearly or has any deficits from the tumor or surgery or treatments. You certainly don’t want to look “off” with brain cancer – people will think ”you’re off” LOL . I kind of like this barber shop job and he’s quite tolerant of my inexperience, it is good “together time” and usually entertaining. Funny how his hair has gone darker with age and mine has gone much lighter. Years ago his hair was sooooo blonde, especially in the summer – such a hotty. LOL

His hair is like the soft side of Velcro. It often collects little lint pieces and my long hairs. I often pluck my long hairs hanging from his head. Rather comical – poor guy. I love to rub his head – he doesn’t always appreciate it though, but I just can’t help myself.

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We had a recent fun overnight in Boston for my 52nd birthday. Dinner with a few college friends which was rather entertaining. Those Maine Maritime couples feel like old comfortable shoes. What an absolute pleasure. And we all love to hear Paul belly laugh as they reminisce or say absolutely ridiculous things. We all roared as we noticed our group of six with reading glasses and iPhone flashlights lighting up the table as we read the menus.

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Speaking of glasses, Big Paul needs his peepers most all of the time now for reading, phone, computer, etc.. Clinking eyeglasses when we kiss can be a very silly new event.

Paul continues to do some walking along with gym work. He’s an early to bed, early to rise kind of guy. He’s like the “Everyready Bunny”. Just pops up everyday around 6am and keeps going. He hardly ever takes naps, except for during his chemo week. He doesn’t even “milk it” a little, not even a little. He certainly has a hall pass if he wanted to take some more time for himself, but no, not my Paul. He has a very strong work ethic and “that’s just what you do”. He’s like his Dad and Grandfather. Grampa Fuller was still driving in to Boston to work at age 90 as an accountant after he retired.

I keep walking a lot, doing yoga a couple times a week and occasional gym work. Feeling great. Staying grounded with a lot simple meditation, breathing and good ol’ basic prayer. Work is busy with my office: PT, Massage and Health Coaching as well as adjunct teaching at UNE. I just keep following Pauls lead. He’s good, I’m good! “You good? “yup, I’m good.” OK, good, I’m good too”.

I love it when he’s up for going to church. I noticed last week how my honey is way more gentle holding my hand during the “Our Father” than the boys are. They turn it into this crazy arm wrestling thing and squeeze your hand harder harder harder until they get the reaction they want. I have to give them a little credit, because it’s usually followed with a sweet hug, kiss and handshake for “the peace”. Silly things we remember about our boys.

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We went to Ben’s game last weekend. They were playing at UMass Amherst so we picked up Jack and a buddy from NMH and went to dinner and the game. That was fun to spend time with Jack and his friend. Hearing about life at NMH. Theres always more info when there’s a friend along. Watching the game live and in person instead of on line or apple tv was a treat, but it was hard not to be able to just go to bed after. The best part was to see him after the game and get a good squeeze. It feels so good to get an “up close and in person” look at the kids. So much easier to tell they are truly doing as well as they say they are or sometimes better than they say they are or maybe even not as well as they say are. Fortunately the boys look and feel good. So, again I say…..”you’re good? Im good.” I think most parents can relate to “when you’re kids are happy, you are happy”.

 

For now, we continue to ride the tide with the chemotherapy cycles, MRI’s and neuro-oncology appointments every 2 months and blood work along with chemo doctor visits every month. Fortunately we know from the past 5 months that the yucky chemo effects subside after a week or so, so its more tolerable. It certainly is not much fun for Big Paul, but he’s a tough guy and is managing it much better than I ever imagined. We have so much to be grateful for. Happy Thanksgiving to all our readers and their families. We are truly grateful for all our friends and family who are joining us on this journey.Thank you for your continued love and support. XO

sunrises over Casco Bay @the end of our street

Everyday I Pinch Myself

imagePaul is doing amazingly well. I can’t believe how far he’s come since April. He is now working four six hour days, which entails a lot of driving. Last week, he traveled five hours north to Presque Isle and has been many places in between. That was his first overnight away for work since his infamous trip to New York last March. I had some reservation about his long trip with some serious self talk utilizing sayings like: “Let Go & Let God” and sending little guardian angels along with him. He had a manufacturing rep with him for that trip, which made me feel better. Vaguely definitive, I know, or try to pretend that I know he’s ok, but still, I worry a bit. I trust that “letting him go”, as he gradually returns to his regular work schedule, will get easier with time.

Heading south, he’s been to Boston, Westboro, Waltham and many other places in between. His last trip to the Worcester area, two+ hours down at 5:45am, then a 4 hour drudging return in the late afternoon Columbus Day traffic back to our vacationland state. I half expected him to return from one of those 4+ hour trips to collapse into the couch or retreat directly to bed, but no, he was shiny and happy to see both Izzy (the dog) and myself. Maybe shiny is an exaggeration, but he looked much better than I had imagined. He even managed to stay up with us for some long brewing crockpot chili and “Apple TV” UConn hockey.
He seems to enjoy his work and never complains about the travel. He continues to “run into” coworkers, customers and vendors that ask where he has been. I think it’s therapeutic for him to continue to share his story. Sometimes it’s even good for an extra sale. Another silver lining?

He’s still handsomely bald with more density to his hair regrowth. Pretty soon he’ll be able to let it all grow with some uniformity, if he decides to. I’m getting used to his beautiful baldness. He continues to use his head blade with great skill. He’s like a professional “manscaper.”. This fun little tool was recently coined the “Dome Zamboni” by a crazy college friend.

Paul’s blood work continues to look good and he will start cycle #4 this Wednesday. So far, his tolerance to the chemotherapy has been quite good. Fatigue continues to be his primary side effect with some chemo brain that he is trying to embrace more and find some humor in. I’m always blindsided by the familiar people I see in the waiting area at the monthly bloodwork and chemo doctor visits. It seems, we see someone we know every time with a new cancer diagnosis. It’s rather disturbing and quite sad how prevalent cancer has become. This cancer journey is shared by so many.

imageWhen Paul’s not working, he does a lot of gym time, reading, watching various TV shows like “Mash”and “Big Bang Theory” (our new shared favorite) or old repeat movies, trying to avoid emotionally draining politics. You can also find him dog walking and having “T time” (that’s me – teeheehee). We like to go out to breakfast, visit the beach, have coffee shop time and such. I do love our coffee shop visits but don’t so much like using the bathrooms. We all know what coffee facilitates. hmmmmm…..(not sure where that potty talk thought came from – another twisted mind, side thought). I’m usually good for “the shock effect”.

Some of my most fruitful writing happens at the coffee shop. I sometimes think of caffeine as “writing water” much like alcohol can be “talking water”. Mom’s occasional martini coined that phrase years ago. Sorry Mom and thanks for the writing material. We know it’s actually the ice cube effect. (family joke).

Paul just finished reading “Boys in the Boat” and is now in the midst of “Inferno”. He loves CIA stuff like Bourne etc.

I just finished reading “When Breath Turns to Air” and now am reading “Everything Happens for a Reason” and “When the Air Hits the Brain”. I am not convinced that these trying events are planted in our lives by our God, but I do believe there is something to be learned from the experience and we are still sorting that out. I trust that something good comes from all life’s occurrences no matter how dark they may be.

Next, the boys:
Ben earned himself some very good playing time in the first couple games and stole himself an “apple”. That’s hockey talk for an assist to one of the goals. We saw his first game in person then watched the next one “on line” at home. Seeing him on the ice in a UConn jersey for the first time with my…… I mean his name on the back was surreal. I have to admit, there was a tear in my eye and a heat rush (maybe that was a hot flash) – whatever, it had a significant effect anyway. He’s worked hard for this and continues to welcome the challenges it brings. Proud moments.
His grades are very good at this midterm and he’s embracing college life with relative ease (as far as we can tell). Ben’s kind of a “mystery man” like his father. A man of very few words. When texting him, you have to control yourself with one question at a time. If you get too excited with multiple questions, you only get an answer to the last one. “Yes Mother” or “will do” are two of his favorites. The grandparents are learning that texting novels do not beget novels in return – sorry PaPa.


Meanwhile, Jack will “bullet form” answers to the long list of questions we send. Jack’s never been “short on words”. As a matter of fact, when he was little, we had to play the “quiet game” on the two hour trip to camp, just to get some actual peace and quiet. “Let’s see who can be quiet the longest”. Somehow that game is no longer appropriate – but still fun to suggest in an insulting comical way.
I do look forward to his chatter and stories when he comes home next weekend.

Jack seems to be adapting to life away from home. Making friends and getting to know his teachers and advisors (he called it “networking” – whatever that means), joining clubs, rowing on the Connecticut River and studying like a mad man. Next weekend is “family days” so we”ll go visit. Sit in on classes, meet with teachers and learn more about “Jacks World”. We’ll even start some college planning for his next chapter. When he comes home, I can just imagine how he’ll land on the couch and get some much needed rest. Sleeping till noon and catching up with local friends. Cant wait to “squeeze him”and feed him.

Paul and I just had our 25th anniversary. We had initially hoped for a special trip to Paris or such, but dared not travel too far for now. We made it very special in our own local way.
First, I’ll mention card shopping. I usually like heartfelt cards with great sentiment but this time I couldn’t quite take the heat. Part of me dreaded card shopping – all those sweet words about love and relationships that go right to my heart and soul. I went into Hallmark and the first card I picked up brought a tear, and the next and the next and the the next. Well, forget it. I decided to go light and write my own “love note”. They all rang true, but I couldn’t endure it. Just couldn’t stand in the back corner of the hallmark shop blurry eyed and sniffling. I realized I didn’t even have a tissue and I didn’t want to walk out in a teary mess cardless. So, I put my big girl pants on, felt my feet on the ground, took a deep breath in and out, and decided to keep it simple with a funny card. Paul’s preferred card style anyway.

This is a cute card a dear neighbor friend gave us  without even knowing it was our anniversary. She said it made her think of us. I agree.

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Paul made me dinner one night (flowers and all) then I made it the next. We even turned the TV off, used our fancy china, crystal and candles. Then we went away to one of our very favorite places, Chatham. I actually rested- not what I usually do on vacation. The weather helped- drizzly, windy and cold. Don’t get me wrong, I still did some shopping and we walked and went to the lighthouse/beach but didn’t run a whirl the whole time making the most of every minute, like I usually do. He bought me fancy dinner at Chatham Bars Inn, then I covered dessert at The Wayside Goose Tavern where we stayed for a few days.

From there, we did whirl around – going to Ben’s game at UConn and having dinner with him. We also stayed with a dear college friend overnight, then on to Jack’s regatta in Hartford. So exciting to see Jack in stroke position cross the finish line with his red boat and teammates.


Paul’s a great driver and escorted me all over New England. I only drove the last hour home. We both “hit the hay” at 8pm when we finally arrived home.

A couple more Tall Paul stories:
Paul’s brush with fame:
A few months ago, Paul received a photo/poster tube in the mail from an unfamiliar address in Massachusetts. He curiously opened it and found a ?12×24? infamous black and white photo of #4 Bobby Orr flying in front of the net. There was a personal note to Big Paul from Orr himself with his autograph scribbled across the front of it. I searched the return address “on line” and found it to be Mr. Bobby Orr’s home address. Wow, directly from him. What a treat. We still need to get it framed. We don’t really have a man cave place to hang it. Actually, our whole house feels like a man cave, so I guess hanging it anywhere will do just fine. We’re not sure who was at the root of this good deed, but we have a few ideas. Would love to know for sure if someone could throw us a hint.

Another coffee shop event/story:
Paul was “head down” deep in his computer at one of his local favorite coffee shops in Portland. In comes this 40 something important looking redhead who forces a “hello” on him, pulling him out of his work. He assumed she was some local politician working her votes, so just casually said, “hello” and dove back into his work. He noticed from the corner of his eye there was a roped off area and some interview process going on with her, but thought nothing of it. The next day, we see on the news and read in the local paper that Miss Molly Ringwald was in town. Little did he know that Molly was hitting on him, looking to join his “Breakfast Club”.

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“It’s our faith that activates Gods power” (Joel Osteen from Mark Chapter 5).
Thank you all for sharing your faith along our journey. Together, we have made great things happen and will continue to make great things happen. Continue to believe and rejoice in everyday miracles in God’s goodness.

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“The Nest is Empty”

Glad nobody jumped and we didn’t have to push anyone out of the nest, so far so good.


The boys have been gone for a few weeks now. Drop offs went ok. Ben’s been gone before, so each year that departure and ride home gets less emotional, but dropping Jack for the first time stung a bit more. Paul and Jack were pretty tough, but when it came time, I gave him a quick hug and promptly walked away. Sunglasses and tissues were in order for me.

After a week of much needed rest and recovery, we are settling in to our quiet house.
We definitely notice it’s more tidy, with less laundry and shoes hanging around, the refrigerator is empty, the kitchen counters are clear, the grocery bill is way down and all in all it’s quite different. Clearly, I am focusing on the “upside”. We definitely miss them, but it helps that they are happy and doing well. They are very busy with school and sports and finding their way in their new environments.
Sometimes we sit in silence for long periods of time, then Paul usually says……………. ”Did you say something?” And we laugh.

Now, it’s time to practice “letting go”. Trust and pray that we taught them well and they make smart choices and capitalize on these great opportunities.

We talk with the boys now and then, but mostly text. Certainly different from when we were in school: talking once a week and writing letters. I was just reminiscing about the old “bag phone” I had in college. Wish we had it now to show the boys, they wouldn’t believe it. We are grateful for the amazing technology today. It’s so much easier to stay connected with our kids while they are away.

We are slowly organizing and doing some much needed clean up. Last weekend, I found Paul working on a basement project. Sorting old hockey equipment and jerseys. Now we can see clearly into the back corner. Maybe less hiding space for our seasonal mouse friends.

I’m currently trying to find the bottom of Jack’s desk. I keep walking into the boys rooms, wondering how I can make them more user friendly for guests while they are gone. For now, I like the shrine look with all the memorabilia. The tinny Patriot’s lamp and the rickety weight bench have to go. The drum set is still up for discussion.
We hope to go see Jack this weekend for his 17th birthday and his first NMH crew race/regatta in Saratoga NY. The following week is Ben’s parents’ weekend at UConn, along with his first hockey game (an exhibition game on campus) vs St Francis Xavier.

“Landslide” has been a favorite song for a long time. I liked it in the late 70’s/early 80’s, when Stevie Nicks and Fleetwood Mac were happenin’, but now it takes on greater meaning. Somehow it goes along with this transition time in our 50’s and this new empty nest thing.

 

Paul just took his last dose of chemo for this cycle. (3 out of 12 done). He recently had clear results on blood work and his MRI. No new tumor growth, just marked scar tissue from surgery and treatment. A big sigh of relief and a celebratory ice cream was in order at our local ”Super Scoops” before they closed for the season.

The Oncologist said the scan was what she would expect to see, especially with the molecular makeup of the tumor which makes it more receptive to the chemo drug Temodar. The scar tissue shows up as a white area around the surgical site – the target area. It might be alarming if she wasn’t quick to explain. She told us she would watch this area, but she’s quite sure it’s scar tissue, it does not resemble tumor growth.
There’s also an interesting black hole where the tumor was removed (the saying “need that like a hole in the head” takes on a whole new meaning).
Bad joke- sorry but it slipped out. I’m usually good for one per blog post.

And how about the saying, “it’s not exactly brain surgery”. These old colloquialisms that used to roll off our tongues now come with hesitation.

Paul’s fatigue comes and goes. Definitely worse during chemo and the week after, then gradually improves. Never seems to get back to the energy peak he had before this second phase of chemo started. Oh well, we were told it would be cumulative so he just has to “hang tight” and get through this year. Paul and naps are becoming good friends. I am lucky enough to benefit from sharing a nap now and then too.
He also gets a little nausea, indigestion and headache but not too bad- he’s not one to complain. He’s rather practical (as the doctor remarked at his last visit (meaning “no fuss” kind of guy). When he’s really tired he occasionally gets a bit forgetful, but I still win with the memory issues. Its good to be able to brag about something. When Paul can’t laugh at himself, I do it for him. Everyday we share smiles and laughter, keeping life light. We will be sure positivity presides.

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Paul is a very handsome bald man and he seems to be perfecting the “head blade”. I find it a bit distracting when he comes downstairs dressed for work with his clean shaven head. Certainly makes me smile. There does seem to be some new hair growth. I would liken it to a fine sandpaper, maybe a #120? Not sure about my grit ratings. I just know that you can feel it coming in in certain areas, but not really see it yet. Maybe he’ll be a towhead like when he was a little boy. He will need a warm beanie soon. He’ll be sporting the boys’ school hats before you know it.

Paul continues to work 3 days a week, traveling around New England, totaling about 18 hours. If he continues doing well, he may try to increase by a few more hours in October. His medical team encourage him to return slowly due to the fatigue factor.

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In case you can’t read the back of Pauls shirt it says “prioritize safety always”. A previous coworker sent it to him. Its good to be safe when walking the dog. LOL

 

 

 

 

We had a great day trip to Boothby last weekend. The Botanical Gardens were tremendous. A safe place to have a nature walk/simple hike without the risk of me getting us too lost. It took a bit to figure out the map, but I managed. Not sure why he leaves that to me. Maybe because I’m a bit bossy and move fast. Although, he usually takes charge with the driving, allowing me occasional copilot duties.

In closing, a coffee shop story: Just today, Paul and I were at a favorite coffee shop in Portland. Along comes a little 5’ tall 30 something guy, with his antique laptop and sits down next to Paul with a purpose. With a mild Spanish language barrier, he makes friends with Paul and proceeds to ask for help connecting to the coffee house wifi. Next thing you know, he’s asking Paul for help navigating on line dating websites. Paul shot some great sideways eye rolls and big browed looks my way. This guy passes over “Tinder” and goes right to “OK Cupid”, sets up his personal profile and starts shopping. Next thing you know, he has incoming messages that Paul helps him retrieve, starts telling him how to spell words and encourages him to set up a coffee shop date. There’s more to that story, but probably better in person. Just know, it was hysterical and so were we when we hit the street.

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 Buzzed & Tired

I’m buzzed, Pauls tired. LOL. Last week MiMi called one night and asked how we were? That was my answer. I was having a little summer favorite “red wine sangria” and Big Paul was tired from another hot summer day and his new regime/chemo cocktail. Sometimes it’s an afternoon iced coffee and still we are “buzzed & tired”. Coffee buzz and cancer fatigue.

Paul just finished his second cycle of oral chemo (500 mg Temodar). He is doing quite well overall and actually up to working three half days with pretty good tolerance. Again, mostly fatigue, sometimes exhaustion in the first week of the cycle. He also has an occasional headache and indigestion. He even noticed a funny food aversion for bacon lately, so please no bacon chapstick or bacon scented cologne for Christmas.

If you’re looking for him in the afternoon, he’s recharging his battery. He says a 45 minute power nap usually does wonders, and sometimes he needs two or even three a day. He has to decide how to spend his energy in his day because he only has so much. He spent the last two afternoons of this weekend sleeping off drug exhaustion. In Maine terms, someone said that I “run him hard” – but he seems to be willing when he’s able. Who wouldn’t want to take breakfast sandwiches to the beach and go for a walk? Bootcamp might be questionable. But I know we’re not just going to sit here and look at each other unless we have to.

He has enjoyed reconnecting with colleagues, coworkers & customers. “Where’d you go today Honey? How many people did you take your hat off for and tell your story?” You can imagine, it might be a little awkward to wear a hat when going to work and visiting customers when nobody else is “sporting a lid”. Reentry can be a bit unnerving at times. He says a lot of people are shocked when he tells them where he’s been the last 4 months. He seems to spend more time hatless lately and he’s getting more comfortable with his baldish head and signature scar from brain surgery.
A friend from MMA told him he looked like a “badass dude” and if he saw him in a parking lot he might just walk the other way. 💪

image.jpegHere’s the new “Head Blade”.  Cool little toy he uses to clean up his hairdo. He’s still watching and waiting for regrowth. The hair he does have on the back of his head grows so quickly he says he’d have to shave twice a day to keep up. His hair is very thick, making it difficult to get any blade through it – like shaving sandpaper. I tried helping the first time – I was excited about the new toy. It didn’t go quite as planned though. LOL. Actually, it was much more difficult than I had imagined. There was no blood, but it was not a handsome haircut. A bit of a patchwork job. That’s a better “in person” story with animation. He was not impressed, but very tolerant. We had a good laugh and he wore his hat all day until he had the energy to “clean it up” the next day.

IMG_5211We both seem to be more tolerant of each other’s idiosyncrasies. A little cancer can go a long way. I know I can be a bit controlling, always taking charge, being a touch “bossy” around the house. I now justify it with, “you have to take control of what you can, because there’s some things you just can’t control”.

 

 

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Its been a busy summer- fun filled with a variety of lake and ocean visits. There are times, I can’t even recall where we’ve been and what we’ve done, but I know it was fun and full. I think I might have chemo brain instead of Paul. No one ever told us the possible spousal side effects. Maybe my STML (short term memory loss) is actually CRS (can’t remember shit) that comes with the maturation process. Fortunately his mind is clear, so he can still fill in the blanks for me. He’s always been an asset to my memory. (“Did I see that movie? Did I like it?  Who’s that actor?”)

Speaking of movies, we have been to two movies in the past couple weeks. That’s another first since March. Obviously loud noise is no longer an issue. We saw “guy” movies (Paul’s choices mostly): the newest Jason Bourne & War Dog. We truly enjoyed both of them. The new Falmouth theater is quite amazing – big comfy recliners. I still want to see “Dory” -he may opt out of that one. 🙃

There are times I think I have reacted more to the cancer scare than Paul. I usually have a sense of urgency in the summer anyway. Trying to “fit it all in” (its so short), but even more so this summer. We are trying to make sure we are connecting with friends and taking in the summer life, spending every possible minute outdoors. I’ll settle down and get back on schedule soon. Back to school time will fix that. Paul just lets me “run” when he’s not game. Now that July is over, we are happy to keep it more simple with walks,  dinners on the deck and occasional outings  Fortunately it’s a touch cooler.

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The last two Saturdays, Big Paul attended bootcamp and kept up with the crowd. The first time, he arrived a little late to class and as he entered I was filled with emotion. I thought I might cry, then I laughed as I remembered him saying “there’s no crying in boot camp”. Earlier in the spring, I came home from boot camp and told him I almost cried in boot camp (sometimes emotion hits me when I least expect it).

I am just sooo happy for him when he is able to do the things he used to do. I continue to be impressed with his progress, attitude and willingness to “get back in the game”.

The boys continue to bring us laughter and entertainment. Ben just came home from summer session at UConn a couple weeks ago. He’s been connecting with friends, working out, skating, sleeping, fishing, eating, eating, and eating. He leaves for Fall semester this weekend – so soon.

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Jack stays busy socializing, mowing lawns (when the grass grows), fishing, water sports, running to Chipotle and catching Pokemon. Sometimes I get to be the Pokemon driver for him and friends (hey, I’ll take any Jack time I can get). He leaves Labor Day weekend for prep school at NMH. We will be empty nesters here. Our house will be very quiet and our grocery bill will go way down. After I dry my eyes, we will focus on the upside and try to put more energy into our work, wellness, “weeding out” and tidying up. Then there’ll be parents’ weekends, rowing/crew and hockey season.

I just can’t help but bring you this funny song – it keeps playing over and over again in my head, so it must be a sign that you all need to hear it. LOL

 

We have met a lot of people living with cancer and they all seem to share the same philosophy of “keep moving forward”,  “stay positive” and “focus on what you can do, not on what you can’t do”.  Which brings me to a favorite song, actually it has been one of my top life theme songs for a long time. Its a long song, but you’ll get the gist of it within the first minute.

 

“To be brave isn’t to have no fear, it’s to not let fear stop you from having a joyful, vibrant life.” by Regina Brett author of “Be the Miracle”(my new favorite book)

A dear friend/client sent me a sweet note recently that said “Peace on the inside, Joy on the outside” – great quote to live by. I’m working on it.

I do a lot of breathing and self talk, including these thoughts:                                                                ………………“Choose Love”……. “Choose God”………… and “Be the Light”.

New & Improved

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That’s what my Paul was before this new stage of chemo. I felt like I had my guy back – I was was sooooooo happy. It was awesome. Toward the end of the 4wk interim (between chemo/radiation & chemo), he was like “Superman”.  He had energy that he hasn’t had in a very long time. Watering grass, planting grass seed, cleaning garage, decluttering, organizing work materials, tidying up his car etc…. I could go on but I don’t want to jinx the situation.

He recently finished the first stage of the oral chemo regime (at double the dose of the previous chemo treatment). He has mostly experienced fatigue as expected. Now he’s in the midst of his 23 days off. He still has energy but not as much as he had just before the chemo started again. Naps are a necessity again. He goes for bloodwork just before starting the next dosing (actually “dousing” may be a more fitting word).
Starting with the next cycle, his dose will be bumped up again and stay at that dose through the remaining cycles. Needless to say, we all wish Paul could be done with treatment, recover from the treatments and forget this all happened. But instead, we again say, “it is what it is”. We just have to embrace and move on.
I hope and pray he keeps doing well. 🙏 He’s a big tough guy with a strong constitution, so I know he’ll endure. 💪

Paul’s planning to start back to work this week. He will start slowly with one or two half days and build up gradually. We will follow up with the Neuro-Oncologist in September. At that time, he will have another MRI and assess his progress and tolerance to the treatment program.

If I could keep him to myself a bit longer, I think I could really get some things done around here. LOL. I don’t think it’s what he has in mind on how to spend his time and energy. He’s eager to return to work instead of working for me.

Paul continues to “hit the gym” He’s like Arnold, “I’ll be back”.
He’s been meeting friends for coffee and we are getting out more, going for beach/promenade picnics and occasional dinners out. I can tell his energy is better because he feels up to going out for dinners, not just breakfast. Although we do resemble the seniors out for early bird specials (5pm dinners are more our speed for now). There’s an upside to that. We beat the crowds and get home for some tv time and early bed. He seems to fade just after dinner (with or without a nap).

We even made it upta Moosehead to visit family last weekend. We did some swimming, fishing and even managed a little golf. We went over to Kineo and played a mini 9 hole scramble 3 v 3 (the young ones vs us old ones). We only lost by a couple strokes. Paul left the steep hike and the 75mph Fountain boat ride for the boys & I – what a thrill. I think we are still catching our breath from that trip. Well worth it though.

“The Man Cycle”

Not to be confused with the menstrual cycle. LOL 😜 I can’t help it, it’s just where my twisted mind went.
This next phase of treatment is chemotherapy. A drug called Temozolomide or Temodar. Paul will take it daily for 5 days before bed then have 23 days off (a 28 day cycle). Can you see the similarity? This is probably not the time to complain about the cycle we have been dealt, ladies.

The primary side effects expected are fatigue and possible nausea or appetite change (anti-nausea meds should help that). The dosage is double from what he did with radiation and then after six months, if Paul is tolerating it well, the dosage will be bumped up again. As explained by the chemo doctor, the dosage is based on “surface area”.  A formula based on height and weight. At 6’6” and 250# that’s a lot of surface area. LOL!
Poor Paul – at the mercy of my humor again.

The chemo doctor said Paul’s prognosis is much more hopeful than many and one of the reasons is because the molecular structure of his tumor has something called IDH-1 mutation and 1p19q co-deletion. This makes the cancer more responsive to treatment. He told us that his prognosis is favorable, meaning “years”, and the word “years” is intentionally vague because it is not known how long before it grows back (2years, 5 years, 10 years?).

So his closing statement to us the other day was, “I wouldn’t cash in the the life insurance policy and go on a three month safari to Africa” but rather get on with your life, think about how you want to live and what you want to do. This chemo treatment is not meant to wipe you out and take you out of your game, but the hope is that you can return to some sense of normality in every day life.
Paul will contact the Oncologist in a couple weeks after he gets started on the first cycle of medicine and see about gradually returning to work.
He is raring to go and spending a lot of time on his computer and in his office (the local coffee shop), trying to get used to a routine and rebuild his  work schedule over time.

He doesn’t take naps so much now unless he just wants to “get away” hahahaha or maybe bored or overworked by the “honey do lists” but he usually goes to bed early. He used to call our bedroom the concussion room – where he would go when he needed a dark quiet space.

This is a selfie I took of us “waiting, waiting, waiting” for one of many doctor appointments. Overall, we are not made to wait long, but this week we had a full schedule of tests and doctor visits. It was a busy couple days. A picture does paint a thousand words – just had to share. IMG_5028

Paul also had an MRI and an oncology visit this past week. The Oncologist was pleased overall with the scan. There was notable scar tissue from surgery and radiation as expected, an area they will keep an eye on, but no alarms or scares of regrowth, fortunately.

They will continue to watch with MRIs every 2 months and monthly blood work before each cycle begins.

Paul continues to exercise regularly and we are trying to capitalize on this amazing summer weather and the place we live. Beach visits and ocean views will be frequent.

In closing today, I’d like to share another recent favorite love song. This YouTube video is fun to watch and friendly for all ages. You might need to interject a mental hockey image or such with Paul in mind.  He does love the Frank Sinatra era, but Gene Kelly will have to do for now.