The Bucket List

I suppose that every cancer patient has a bucket list. You really never know what is going to happen: you have quite a high chance of suffering a stroke or heart attack during treatment and ending up passing away, or you might get an aggressive mutation that lets the cancer spread out of control and it overwhelms your meager defenses, despite your best efforts to be healthy. But even if you don’t have cancer there are so many things that can end your life too early… do you have places you’ve always wanted to see? Things you always wanted to do? There really is no time like the present, when you don’t have any idea how many more turns of the earth you have left, to do something that you can look back on for the rest of your days with a smile and a warm, refreshed heart.

Here is a principle you can live your life by!

For many, many years I always have said I don’t have a bucket list, because I have been lucky enough to do everything I ever wanted to accomplish in my life: I have the most wonderful people in my life, my family and friends, and even if I haven’t specifically said it to you yet, I love each and every one of you. Love is so much more important than travel or anything you can own. The most precious moments I remember are meals and experiences shared with the ones I love.

My friend Kat once sent me a link to an astounding cover of a Megan Trainor song, Like I’m Gonna Lose You. I’ve since added it to my chemo playlist and the lyrics get everything right:

Show Lyrics

Part of me wants to just stay home and spend all my free time visiting with friends and family. And I do! And yet there is a deeply nomadic part of me that has the urge to wander the earth, because sometimes everyday life can be confining. As often happens in life, bills need to be paid, kids need to be fed, everything in the house seems to be falling apart around me and I barely have the time to patch it all together. It’s way too easy to relegate all your dreams to the back burner when you’re busy playing Whack-A-Mole with everything else.

There are so many things out in the world to see and do, and most of those things would be fun, but when the number of your remaining days is uncertain, it helps to prioritize those dreams; and perhaps the best way to do that, I figured, was to finally embrace the idea of a bucket list. Most of the things I would place on a bucket list are projects that would take hundreds or thousands of hours, and I have realized that to be on my bucket list, I would have to accomplish it in a very finite amount of time like a few days or a couple of weeks.

Really the most important thing on my bucket list lately was to visit my cancer buddy LP (and do so regularly), and I accomplished that a couple of weeks ago. It was all I had hoped for and more: an airplane adventure, good Cuban food, a bit of sightseeing, and the company of some people I love most in the world.

For my next stunt, there is one thing that my mind keeps coming back to. When I was growing up, with my parents and sister (and sometimes with our dog Tiny and my parakeet Hershey), we would drive all the way across the country whenever the U. S. Army stationed us in some new place. I remember in those days, while we chugged cross-country in our Volkswagen Squareback that we called Mildred, my sister and I would sing popular songs and show tunes until my parents’ ears would bleed and I’m sure they spent the hours praying desperately for us to fall asleep. But when we weren’t singing we did spend many, many hours just staring out the window at the cornfields going by, or the canyons and mesas drifting past, and somehow the experience of passing over the landscapes and vistas of the United States became some of my most precious memories. Even the memories of breakdowns and getting epically lost are good recollections, like the time we pulled off the road going up a hill in a snowstorm in New York state and the car had stalled and wouldn’t start again. My Dad was able to diagnose it was an ignition problem. He removed the steering wheel and handed it to my Mom, who looked down at the steering wheel in her hands, re-evaluated her life and said, “That’s IT!!! I want out of this marriage!” Fortunately she stuck with it and we suffered many many more memorable road trips together, full of show tunes, bee stings, rustic camping, overlooks, hikes, restaurant dives, hotels with broken air conditioning, even an urgent #2 bathroom stop in what turned out to be a homeless person’s forest bedroom.

There is a song I always associate with those road trips, it is On the Road by Carl Franzen performed by John Denver. It captures exactly the feelings of the lonely road, even with car breakdowns and getting lost:

Show Lyrics

Another great set of childhood memories for me was when we lived in Japan, we traveled by train to see Kyoto and Kamakura, and I just loved the train system, and the effortless way the trains went clanking down the rails past villages, gardens, forests, and farms. I thought at the time that Japan must have invented rail travel, since they had so many trains everywhere, and they had the fastest and smoothest train, the shinkansen.

I had heard before of the Amtrak Zephyr train that goes from Emeryville, CA to Chicago, IL over the course of two and a half days, with an observation car where you can take in the breathtaking sights of the American west flying by, and I always dreamed of getting a bedroom sleeper car cabin for two so that me and my wife could make the trip together. I also want to visit my cousins in Chicago and I have long wanted to visit the U-505 housed at the Chicago Museum of Science and Industry.

It isn’t particularly cheap to travel in the sleeper car, as meals and stuff are included, so I imagined the expense would be achievable with just the two of us. But when I mentioned this dream to the children they were super excited to go, and I had to contemplate the expense of getting three of the 2-person cabins, and airplane tickets to California, and back from Chicago. After pricing it all, the cost was daunting particularly when dropping several thousand dollars on cancer scans and treatments, hitting my out of pocket maximum but also having to cover the costs of tests and procedures the insurance refused to cover. Honestly, all the expense meant that I kept the whole plan in my heart as a sort of pipe dream on the side, something that would be nice but probably nothing that I would get around to doing.

I can’t really express how shocked I was this weekend to log into Facebook and see our friend AW started a GoFundMe to finance the trip, and after our families did a lot of publicity, the campaign had already reached its goal when I noticed it. I was stunned at how many people responded so generously to make this trip happen, and my heart is full of emotion at all the prayers and good wishes I receive every day.

So many people offer us so much assistance, bringing us meals during surgery or giving us GrubHub gift certificates, which very directly helped me to rest and heal from my surgeries and treatments since I cook the family meals at home when I am feeling well enough and it gave me a well-needed break when I needed the extra rest. Some friends and my children have helped drive me to lab appointments or radiation and chemotherapy treatments.

It is difficult for me to accept the heartfelt charity of others. There are so many people I love in my life who need some kind of help from me, be it companionship in times of loneliness, to shopping for food and protein shakes for the homebound, helping fix home carpentry issues, fixing computers and technology, setting up networking, teaching people how to use their phones and bluetooth on their car stereos, assembling furniture, fixing minor car issues, and so many other things, that I prioritize all of these loving acts of service over time I would like to spend on my own projects. But there is no greater love than to pour yourself out for the good of others. I love the St. Ignatius prayer:

Teach me to serve as you deserve, to give and not to count the cost, to fight and not to heed the wounds, to labor and not to seek to rest, to give of my self and not ask for a reward, Except the reward of knowing that I am doing your will.

So I realize this is why I find it difficult to ask for or to receive anything in return. And it’s why this gift is so very special, not because I get to spend precious time on a trip with my family, but because the people I love wanted us to make beautiful memories together. I am incredibly thankful and my heart is bursting with appreciation!

New Scan… New Plan (Chemotherapy #34)

It has now been a concerningly long time since I have had chemotherapy. The last treatment was #34 on November 28, right after Thanksgiving. Chemotherapy was aborted on December 19 due to low platelets, and also aborted today on January 9, also due to low platelets and a change of plan. Though I feel amazing after 6 weeks with no treatment, I have been quite worried about the cancer being able to progress unchecked for all of this time.

Adding to my stress about cancer, I realize I have been depressed: mourning the death of my friend LD and worried about the deterioration of my 85-year-old friend MG, both Lunch Bunch friends. In addition, December 10 marks the anniversary of our daughter Maggie’s death, and December 16 is the anniversary of my brother-in-law JD’s passing. The combination of all these profound feelings of loss has been a little emotionally overwhelming for me, and I find myself with tears in my eyes at the most unexpected moments.

I’m going to describe what happened since the last post, and I am going to organize this post in descending order by date so that the most current updates are at the top, in case you find yourself in a TLDR sort of situation.

Today, January 9. I had a CT scan yesterday that went quite smoothly. They accessed my Bard PowerPort and used it to inject a contrast dye that allows the CT scan to better distinguish cancer tumors and other anatomy. The scan took about three little passes and then they de-accessed my port and sent me on my way. I can always tell when the scan results aren’t very good, as they don’t appear on my MyChart page until after I’ve talked to a doctor. So I had some trouble sleeping last night. I found a neat YouTube video with relaxing music and frequencies, that turns into rainstorm sounds. I fell almost immediately into a good deep sleep and besides being a warm platform and lap for the cats to fight over, I woke up around 3am with my head lolled to one side, a sore neck, and a good hankering for my nice warm bed.

We woke up early this dreary, drizzly morning and went to the cancer center, and there was a whole lot of traffic backed up because everyone seemed to be waiting for the valet parking. To get to my lab appointment on time, I leapt out of the car and walked a good way past all the stopped cars in the traffic jam. There is no substitute for feeling good, refreshed, and not fatigued due to any recent chemotherapy, so my walk was brisk and I was not even winded.

They sprung a urinalysis on me and after me staring at a cup in the bathroom for about 10 minutes, they gave up and took me to get my port accessed and blood work drawn for the Carcinoembryonic Antigen (CEA), Complete Blood Count (CBC) and Comprehensive Metabolic Profile (CMP) tests. They gave me a urine collection container to go and sent me up to my oncology appointment.

I got to see the PA, EMD, who I always enjoy seeing because she is very attentive to my symptoms and side effects. I have been having some intense bursts of right upper quadrant pain, particularly when I overdo things with my core muscles and don’t rest enough, but it concerns me so I mentioned it. In December I had been having lots of nosebleeds due to low platelets, but it seems to have resolved and I get an occasional pinkish color in my ever-present runny nose. I got my lab results and my platelets were 47 — not high enough to meet the threshold of 50 and certainly not the low-normal value of 150.

My Carcinoembryonic Antigen (CEA) result, which shows the rate of cancer growth, is now 45% higher at 34.4, up from 23.7 on 12/19/2023:

EMD then discussed the CT scan results, which were about as expected after 6 weeks of no chemotherapy. I have three lesions in my liver since the radiation treatment of the last one early in 2023. There is a new one in the right hepatic lobe, that is 1cm:

There is an existing lesion in the left hepatic lobe, that has grown 60% from 1cm to 1.6cm:

There is an existing lesion in the back of the right hepatic lobe measuring 3.2×2.2cm, size unchanged.

There is a 1cm peritoneal nodule on the abdominal wall of my left upper quadrant that has not grown, but there is a new nodule attached to the outside of the colon in the left lower quadrant that is 0.7cm that is most probably a diverticulum. There is a small amount of ascites (free abdominal fluid), a little more than in the last scan but not much. We want to avoid the ascites getting worse as much as possible, as it would have to be drained when a lot of fluid collects, but alas, this is the fate of people with peritoneal tumors that leak lymphatic fluid.

New Plan: So now that the efficacy of the FOLFIRI treatment is wearing off (mostly I suppose by skipping so many weeks because it’s knocking the crap out of my bone marrow), there is a new plan. In two weeks we will change to using the same Bevacizumab I’ve been using with FOLFIRI, administered every 2 weeks, plus an oral chemo agent called Trifluridine+Tipiracil, that I will take 5x per week for 2 weeks, then will have 2 weeks off. This seems much better to me since I have read that daily oral chemo keeps the pressure on the tumors and stresses them more. It sounds like this regimen has a lot fewer side effects than the FOLFIRI, and I certainly will not miss the 4-5 days of caustic liquid poops that are literally a pain in the ass.

Finally, we went to the infusion clinic and had to wait for a while for a room with a bed so that they could change out the glycerin in my HAI pump. This involves a nurse sticking a big needle into my abdomen and down into the HAI pump, extracting the old glycerin, flushing it with saline, then adding a new 30ml of glycerin that will keep me filled for the next 12 weeks. The nurse was training to be able to do the procedure on her own, so she was accompanied by nurse O., who has expertly accessed my HAI pump many times in the past. It was nice to see nurse O for the first time in a while, she deserves a lot of praise for her skill and professionalism. The new nurse did an amazing job of putting the needle into my HAI pump: she did it very smoothly without rocking it which causes a needless amount of discomfort. If I had gold stars on me to give, she would have earned one that day.

After they released us from the infusion clinic, we went outside, where a huge thunderstorm was rolling in and flickering the power for half the night, while my cell phone chimed with warning after warning from the National Weather Service to beware of flooding, tornadoes, and falling trees.

January 3-6. I took a trip to Florida and met my parents down there, to visit our old family friend LP, who is 82 years old and in the midst of his own battle with cancer. He has been my cancer buddy for a while, we were diagnosed with different cancers at about the same time, and we’ve both had quite a struggle, tough chemotherapy, surgeries, and it has been wonderful for me and my mental state to have our mutual support and encouragement.

It was a wonderful few days off, and I arranged it so I arrived at the airport and went to pick up my reserved Toyota Camry. The woman at the counter asked how many of us there would be, and upgraded me to a roomier car, which was a peppy Land Yacht of a Dodge Charger, in a fetching color:

I got a fast car. Is it fast enough so we can fly away?

I waited in the Cell Phone parking lot and picked up my parents when they arrived. We drove to LP’s house and had a wonderful, lovely visit. I got to go to the cancer center with LP for his labs and chemotherapy infusion. It seems like I spend a lot of time in Cancer Centers, so I was impressed at how classy this one was, with custom chairs and a number of nice spaces for gathering and waiting.

Back at LP’s house, we got to listen to my Dad and LP talking about their old war stories, and I had some late-night heart-to-heart honest chats with LP about how things are going for both of us.

LP’s Cancer Center in Florida

The weather, though not warm, was more tolerable than it was back home, and I captured a photo of Mrs. P (BP) feeing the birds with my Dad:

Dad and BP feeding birds at the lake right behind their house.

LP was our neighbor when we lived for three years in Arizona, when I was in Kindergarten to 2nd grade. He was very tall and had an imposing figure, and a booming voice that scared me at first but he always had a heart of gold. I remember he used to play with us, letting us kids crawl all over him like a jungle gym, and he would crawl across the floor with us all fighting to stay on top.

It was great to spend a little time with my old best friend from Kindergarten, LP-III (technically, LP is LP-Jr.). We got to meet his wife, SP, and their son and daughter, who were delightful and well-mannered young adults.

LP-III and I got into all kinds of trouble as kids, and anyone who knows me well has heard one or two stories, like the one about the time LP-III and I were throwing big rocks across a road to get them all the way to the other side, and some idiot Gunnery Sergeant drove his car into our rocks and broke a window and muffler when they collided with our rocks. The guy was scary and a giant tall, angry looking man. I turned and booked it, running to the freedom of a life on the lam, and LP-III sat frozen to the spot and gave the guy his name and my phone number. My mother got a call about two boys wrecking cars with rocks and knew exactly who the mysterious fugitive was.

To be honest, a lot of the trouble we got into could be traced back to me being a bad influence.

I also got to see LP’s daughter BNP, who is now a successful and high-powered executive.

LP’s kindness and sense of humor when I was an impressionable little kid, changed something about my mental DNA. Pretty much ever since then, I have tried to live with the kind of loyalty, friendship, and compassion that he showed every day. To my friends I refer to him as my “other Dad” which is probably confusing but I learned a huge amount from LP, and continue to learn from him even now.

How do you deal with a fatal cancer diagnosis? With love and laughter, living the biggest life you can live, every day of your life because tomorrow is not promised… even if you don’t have a fatal disease. I suppose like they say, life is a terminal condition. Make the most of it.

In that vein, I stepped out and spent a little time visiting with my friend DH, his wife and two daughters. He used to own the Brown’s Billiards pool hall where I got my start playing APA league games, until the business was shuttered by sweepstakes companies offering a better deal to the landlords that owned the space. So DH packed up, moved to Florida, and purchased the APA franchise in that area, so now he is the league operator. In memory of DH and Brown’s Billiards, my pool team still uses the name Brown’s Bombers.

December 30-January 1. I spent New Year’s Eve on an annual tradition getting a VRBO rental with my pool friends in Asheville NC. We didn’t do much local tourism, we just stayed in, played pool, and had many long chats and relaxed for a couple days. My friends made dinners and lunches and I just had to show up and be present. I had a wonderful time.

December 28. A special treat! My friend MB was in town visiting his daughter and me and my lovely wife got to have dinner with MB and his wife at Nantucket Grill. MB was my boss when I first moved to this area, and we started a business together that operated profitably for many years. He has always been a fun, engaging and refreshingly honest person and his including me in lunches and social events so shortly after I moved here, helped me to come out of my introvert-cave and engage more with people.

Me and MB at Nantucket Grill for Dinner

December 26-27. We drove up for an overnight trip to northern VA to visit my sister and parents for Christmas. Our car threw a check engine light and the coils and spark plugs had to be replaced. I also was able to have lunch at a fancy French restaurant called Mon Ami Gabi in Reston with my high school friend JK. Sadly, this restaurant closed at the end of the year after 15 years in that location.

December 25 we celebrated Christmas morning at home with all our children, and we had an evening dinner with my in-laws, Grandma K and Grandpa J, in their home about 45 minutes away.

As a Christmas treat, my wife made me keto peanut butter cookies using almond flour, with homemade chocolate kisses made with Swerve sugar substitute. Cookies have been something I haven’t been able to enjoy since going on a Keto diet.

December 23. We got an invitation to dinner at the Angus Barn with my friend JC and her husband S for his birthday, but he got sick and they had to cancel, so we used their reservation to have a nice date night. The food was incredible, I had a 22-ounce prime rib and my wife got a filet mignon.

We took a photo together but I look kind of creepy since in the first photo my wife had her eyes closed, so in this one I was showing her how to keep her eyes wide open for the shot, and I over-did it a little. So now I look like I just came from the Creepy Valley. Speaking of over-doing it, check out all of the Angus Barn Christmas decorations!

December 21-23. Our college friend AS took a train down from way up north so that she could visit for a few days. I took some time off work and we hung out, walking in Duke Gardens and going to fun restaurants which without chemotherapy was nice, I could have spicy food and not pay a gastrointestinal price for it!

December 19. My platelet counts were at 44, so the FOLFIRI+BEV chemotherapy was cancelled to give my body time to rebuild and recover.

December 16. The whole family traveled up to northern Virginia to celebrate my Dad’s 80th birthday! We had Bea Marlow cake that my Dad made for himself from memory, he’s extremely well-practiced at it. It’s the first sugar I had in a very long while. I didn’t have very much, but sugar sure activates your cravings for more. I felt like a drug addict wanting more. My father doesn’t like a lot of fuss made over him, but I think for this milestone birthday especially after a recent heart surgery, it seemed to warm his heart with the support of all his family.

December 8. After suffering more than a week of nosebleeds that leaked like a faucet, my oncologists set up an appointment with an ENT who cauterized my nasal passages. I probably lost a terrible amount of platelets that week. After only a couple days, the bleeding was down to a little pink staining when I wiped my nose, which is so much better than what it was.

December 2-6. I came down with a cold that gave me a fever, body aches, dry cough, headache, bad nosebleeds, and chills. I went to my primary care doctor and after some tests for COVID and flu, it turned out I had the flu so they started me on Tamiflu and after a day or so I started feeling better, but continued to have a much milder version of the same symptoms for quite a few days.

November 28. Chemotherapy #34. Blood work was okay, CEA was a little more elevated but not by a whole lot. I got the FOLFIRI+BEV regimen, both barrels at full strength. I had a horrible headache during and after chemo. The steroid Dexamethasone gave me only 3 hours of sleep that night, I spent the night staring at the ceiling listening to my wife’s breathing, and Elsie the cat wanted hours and hours of pets while I was obviously awake.

November 27. Date night at Parizade! My wife and I went to one of my favorite restaurants, Parizade in Durham NC. I had the amazing pork chop, which was incredibly tender and juicy, and she had the lamb chops.

November 24. Drove up for an overnight trip to northern Virginia for another Thanksgiving dinner that couldn’t be beat. As always, it was nice to have the whole family together.

November 23. The family celebrated Thanksgiving at my in-laws’ place, and my oldest son IG made the Indian Wedding Hash with my supervision and recipe. It turned out great with a few “foodie” modifications we made to the recipe.

November 19. Got to visit my friend B and her family near Fayetteville. I’ve known her for probably 20 years, and she has the sweetest husband G and daughter P. I got a wonderful picture drawn by P, and we got to catch up. My new year’s resolution is to visit B more often. Our visits are carefree and B is one of the few people in my life who can recharge my energy… I am secretly an introvert but I love people and visiting friends and family, but it is a drain on my energy to be with most people. B is a happy exception to the rule. B cooked me a fantastic dinner of Linguini alla Boscaiola from a recipe I brought, and it turned out great!

November 12. I took a day trip to Richmond to visit my friend RT for his birthday. We went out to Kuba Kuba for lunch, then to the Roosevelt for an amazing dinner! I had seared Ahi tuna:

That’s about all I have to catch up on for now!

Losing a Friend and Gaining a Family Member

My emotions are still a little too raw to be writing this post, but perhaps it will be one of those cathartic things that will make me feel better in the end — but somehow I doubt that I will feel better anytime soon.  But at least you, the reader, will have a little insight into my life’s ups and downs, which can’t be a bad thing.

I have a friend LB who is one of my Lunch Bunch friends, and she is one of my dearest favorite people.  I have known her for 13 years, ever since our Lunch Bunch circle first formed.  Our Lunch Bunch started when my friend and coworker SG went by himself to one of our favorite restaurants for lunch.  I had recently changed jobs and wasn’t available that day, so he went by himself.  Back then, the restaurant only had 9 indoor tables: one that seated two people, six that seated four people, and two that seated 8 people.  The place was packed and there was a wait that would have exceeded his allotted lunch hour.  He was waiting patiently in line to be seated, and two very kind gentlemen (MG, 73, and HC, 70), waved him over to their table and told him he was welcome to sit and order lunch and participate in their conversation–or not, depending on his preference.  Knowing SG, he probably wasn’t too comfortable with this offer, but it might have been the only way to quickly get lunch, so he accepted.  He had a delightful lunch and and engaging conversation, and at the end of the meal MG and HC invited him to join them again anytime — they always came on the same day at the same time.

Some weeks later, SG and I planned to eat lunch together at the restaurant, but he wanted me to meet these gentlemen if they were still there.  We arrived, SG introduced me to MG and HC and we all sat down and shared a meal together.  And thus, the Lunch Bunch was born (though it didn’t have a name yet).

The restaurant had a waitress named LB who was very friendly and kind, though she had an interesting but endearing quirk: she was kind of clumsy and sometimes she dropped things and you would hear a crash in the kitchen followed by what sounded like harsh foreign words from the owner of the restaurant.  The owner couldn’t fire her though: she was married to his son and she worked there for free, and all her tips were given directly to her husband though she did get free meals when things slowed down.

One day, when we all piled in for lunch together, LB gave the Lunch Bunch its name. She said, “the Lunch Bunch is here!”  She was always a lot of fun to talk to, so several times we invited her to come and join us if she ever wasn’t working that day.  I think eventually the restaurant ended up hiring enough wait staff that she only had to come in during catastrophes or days of poor planning, and she started joining us at lunch and became part of our circle until she and the owner’s son got divorced and she was banned from the restaurant.  She also dropped off the radar for a while after the divorce because her life was complicated, I suppose.  We stayed in touch on Facebook, and now and then I would meet her for lunch at other local restaurants and catch up.

LB was always generous with her time. She was an outgoing, supportive friend and had a great big heart. When our Lunch Bunch friend MG had his knee replacement surgery, his son who lives in town didn’t feel like taking him the hospital, or waiting for him to get through surgery, or even visiting him afterward. LB immediately volunteered to take him to the hospital, she waited for him to get out of surgery, and she stayed by his bedside all night until he was discharged the next day, and she drove him home.  Back in February, when my wife had to be at work during some of the radiation treatments on my liver, LB woke up at 5:00 am for four straight days, drove 45 minutes to pick me up and take me to the cancer center.  Her friends and family could always count on her to drop everything to help them whenever they were in need, either by transporting them somewhere, spending time listening to their problems, or by bringing them delicious homemade food.

She was like a Disney princess because wild animals like squirrels, deer, and bunny rabbits would come up to her and let her touch them — even weird varmints like lizards, bumblebees, and butterflies, and moths got in on the action.  And so did a large number of people: she had more friends and acquaintances than I could even count.  I am kind of an introvert at heart so I prefer to have a small number of very good friends instead of hundreds of more distant friends, because even though I love being with people when I feel like it, all my energy is revitalized by being alone and reading, or thinking, or listening to music, or woodworking, or just daydreaming (about ice cream mostly).

When I got diagnosed with colon cancer, she texted me often, tracked my progress very closely, listened to me complaining about the worst times, and took me to lunches that my stomach could tolerate after chemotherapy.  She encouraged me to be grateful for every moment, to live every day to its fullest, and she told me never to worry about the outcome.  Life is a journey best taken one small step at a time.  I was going to be just fine.

I remember when her dog Layla, a pit mix, had to be put down, she talked about her beautiful dog’s life from puppyhood to the grave. Layla was her companion, her family, and her protector and after Layla died she was so unconsolably sad. And she began to get very anxious about living alone without Layla’s protection since she had several creepy ex-boyfriends who continued to stalk her even years later.

As generous as she was giving her time to so many people, she was petrified of being a burden to anyone.  She was fiercely independent and insisted on never needing help.  But she always trusted me since, as she said, Layla always stood guard between her and people she should be wary of, and Layla always took an instant liking to me, which was very rare.  So whenever LB’s cat Elsie needed to be fed while she was out of town with family or friends, she gifted me with her trust and her house key–and a set of unbelievably specific instructions for feeding, brushing, and caring for Elsie (and also information about caring for her plants).

Then this year at age 40, she got a uterine cancer diagnosis and shocked me by saying she wasn’t going to get treatment for it, she was just going to let it take her.  She was anxious, fearful, and suspicious of doctors and hated needle sticks and the very idea of surgery, even though she had a better than 95% chance of survival. I was shocked and saddened by this decision, and I think I was a royal pain in the ass about getting her to have a second opinion and seek more information about treatment.

I work hard to silence all judgment when I am with my friends and family.  I focus on always giving unconditional love, and it was personally very hard for me to support her decision without my own feelings getting in the way: here I was, struggling and suffering for the smallest shot at something like a 12% chance of cure, and her just giving up.  It was painful for me to contemplate her choice, and honestly it will always haunt me.  But her life was harder than I can even wrap my head around.  A lot of people took advantage of her generosity and kindness, and she suffered a lot of abuse, trauma, and betrayal from the people she loved the most.  She didn’t want to die, but she also wasn’t all that excited about getting dumped on even more in life.  In her darker moments, she even seemed sort of relieved at the thought of wrapping things up at this point.

Then she started having panic attacks and being afraid to go outside.  I started bringing her food and cat food for Elsie when she was too anxious to leave the house. Then her HVAC system caught fire and nearly burned her house down, and she was anxious about being indoors too even though it got completely replaced with a brand new, safer HVAC system.  Her doctors prescribed anxiety meds that made her angry, or gave her thoughts of suicidal ideation.  She started going for days without sleep and hallucinating.  After two stints in rehab for alcoholism years ago, she admitted she had started drinking again.

Alcohol is a scary poison: she would drink it to fall asleep after days of insomnia but I warned her often that alcohol, especially in large doses, interrupts good sleep, prevents REM sleep and deep sleep, and over time can do permanent damage.  She pretty much ignored all that, and soon her drinking quickly led to blackouts, memory loss, mood swings, and mixing SSRIs and sleeping pills with alcohol.  She could barely walk in a straight line, drinking or sober. She started getting paranoid. An ex-boyfriend from decades ago has been driving by her house ever since they broke up, and he recently knocked on the door begging to talk, and she threatened to call the police if he didn’t leave.  She changed her locks and gave me a new key, “just in case.”  Just in case… what? She started alienating herself from friends and family, being argumentative or sometimes just texting and not making any coherent sense at all.  She couldn’t hold down food if she ate it at all. She lost all motivation to succeed, improve, or even to straighten up around the house. She was complaining of pain in her legs that felt like her muscles tearing off the bone.  I begged her to make doctor appointments with her primary care provider, a neurologist, and an orthopedist.  I suggested specific doctors and specialist. I would even take her there if she was anxious about driving. She kept canceling the appointments, anxious as she was about doctors (and it turns out, not wanting me to know too much about her medical status). She also didn’t like how doctors blamed every little thing on her alcoholism (which, to be completely honest, was the root cause of a great many issues, starting with her being born with Fetal Alcohol Syndrome and decades of drinking leading to Wernicke-Korsakoff syndrome.

For the first time ever, we were getting in arguments as she misinterpreted my attempts to understand her increasingly cryptic texts (often sent in the wee hours of the morning).  After getting angry at me, she would stop reaching out for a few days, then returned to apologize.  When she did that, she sounded completely normal, like a dark cloud had passed.  She was struggling hard to change and cut back, and to leave the house. She was making plans to attend a concert, she went out for groceries, she reached out to friends and family.  She reported things were going so much better except for the leg pain.

Last week on Monday I had a CT scan and she texted me at 4:17pm wanting to hear the results, but the radiology report wouldn’t be available until Tuesday before I had chemo.  I was feeling sick that day — I took the day off work to sleep when I wasn’t being CT scanned and filled with iodine contrast — and being asleep I didn’t respond for a few hours.  I didn’t get a response which was weird, she always responds immediately even if lately it’s just nonsense.

Tuesday morning at 8:00am I went to the Cancer Center for my oncology visit and chemotherapy infusion, and tried to text and get any kind of response. Silence.  I called, even at 3:00am, and it went to voice mail.

Wednesday morning I went in to work, had my regular status meeting with my co-workers, and the worst terrible feeling settled on me and I felt some power, some force saying (not literally), “you must go do a wellness check.”

I took an early lunch and immediately drove the 15 minutes or so to her house, where I found her parents on the doorstep trying to get into the house.  Their key didn’t work, and I explained about the lock-changing and her sort of paranoid thoughts due to the ex-boyfriend thing.  My key worked and got us into the house.  We went through the house, and as we got to the bedroom we found her peacefully lying curled up in blankets in bed.  She was very cold and very dead. There was lividity and no rigor mortis, and later on my guess for the police and paramedics was that she died on Monday between 4:17 pm and 7:17 pm.

I was shaking and crying, I was immediately in shock.  My face felt numb.  My hands felt numb.  Her parents, who I had never met before, were also in shock. They called 911 and we waited for the police to arrive.  We explained everything while the paramedics came and went back to the bedroom. The medical examiner arrived with the forensics team and took pictures of everything.  Her parents and I gathered all medications from everywhere in the house we could find so they could make a record and count the pills in each bottle.  Her father was looking for a suicide note but I told him, there was absolutely no way it was a suicide.  Just days before her mood was improving, her anxiety was lessened, she had hope for the future.

I suspected she had a pulmonary embolism because she was essentially bedridden by the leg pain, and leg pain is often a good indicator of dangerous clots.  Her parents suspected alcohol and medications, and told me a great deal about her history I didn’t know (and really, I didn’t want to know that my friend was so troubled in life with relationships, and family drama).

I kept looking for her cat Elsie but she was nowhere to be found, so I assumed she had been let outside before LB died, but it seemed unlikely because the cat only wanted to be outside for a few minutes to scratch at the dirt and smell everything before begging to come back inside.  So I just focused on being there for her family and helping them grieve, and trying to hold my own self together.  The lead police officer was an incredibly compassionate, sympathetic person and I appreciated his calm demeanor and gentle way of asking questions he needed the answers to.  Soon the medical examiner told the family he was going to put her in a body bag and put her in a nondescript white van parked on the street.  Her parents went on the back porch because they didn’t want to watch, but I waited for them to put her on the gurney and I walked them out to the van.  For some reason I just felt like she needed someone to walk with her body and spirit.  I kept thinking about how fearful she was of needles and surgery, and the indignity of the autopsy that was to come.  She would not have wanted it that way.

When she was gone and the police excused themselves to leave, I stayed and chatted with her parents who were just reviewing all the puzzle pieces in their head, and I was adding puzzle pieces of my own until we got to a sort of sense of being settled.  The cat Elsie showed herself and she was absolutely pitiful.  Her tail was puffed out like a wire brush, she was crying and coughing, shaking and miserable after almost two days not being fed and having to see her mommy’s body.  I have never seen an animal grieve before, but it was obvious that Elsie was suffering a deep and terrible grief.  LB’s parents said they have no idea what to do with her, since one of their cats used to live here but terrorized Elsie and so they took that cat into their own family.

I remembered that LB had been impressed that her cat really liked me and let me pet her, when she was often quite triggered by men due to abuse she suffered in the past.  LB made me promise at the start of her anxiety troubles that if she ever died, I would adopt Elsie.  I did promise that, but I knew in my heart of hearts that it was much more likely statistically, that I would be the one who died first.  But I’ve grown to love Elsie and her little quirks.  She is adorable and just very, horribly cute.

I explained LB’s wishes to her parents and they were very relieved.  We decided to leave Elsie in the empty house for a couple of days and they would feed and check on her, and when my chemo was taken down I could text them and pick up the cat.

When I came back for Elsie, they had found her cat carrier and after giving me a status update on their obituary writing and funeral preparations, we loaded her into the carrier.  They gave me LB’s jacket so Elsie would have her smell.

Elsie has been adjusting to life in a new home with two big male cats — and Elsie is so delicate and small. But she grew up with a pit bull mix and is pretty fearless about enforcing her boundaries. She is also very curious about our family and the children, having spent much of her life with only one or two adults. Her favorite activity seems to be knocking things off all the dressers and end-tables, and she is quite fond of waking me up at 3am wanting tons and tons of pets, but that isn’t so horrible. Elsie is now surrounded with love and doing well in our family.

Overscheduled! (Chemo #32)

It has been far too long since I posted an update, but lately it feels like every single moment of every single one of my days is overscheduled. It has been giving me a lot of extra stress and I think I need a vacation… soon! But I only have a couple vacation days saved up and I have to be careful about using them in the run-up to Christmas.

So let’s catch up and talk about some of the things I got to do up until today.

Sept 13: Dinner with friend S. at https://www.scratchkitchenandtaproom.com/. I’ve known my friend S. since about 2001. I have always found his honesty refreshing and I love hearing his stories. He is particularly open with me, more so than with other people, because I am never judgmental about his life choices. I get to live sort of vicariously through him because he is unfiltered, no-nonsense, and he doesn’t tolerate a bunch of crap from people. I admire his strong boundaries and ability to live for the day. We always have fun conversations even about the tough parts of life.

Sept 15: Visit from friends AS & PV. One of my early college friends AS and her husband PV stopped in our town to visit us on their way back home to Connecticut. It has been something like 8 years since we have seen each other, which is a regretful number of years. How do they fly by so quickly? It was my first time meeting A’s husband PV since they have been married for 3 years and the whole COVID thing really arrested our travel plans for a long time. We went to some nice local favorite restaurants and did some well-deserved catching up. It was nice to visit old friends, it is truly one of the greatest joys of my life to spend time with friends and family.

Sept 22: Visit Parents and Sister in DC. I took a day off to travel with my sons IG and JH to visit my parents and sister in the Washington, DC area. My father was scheduled for heart surgery the next Tuesday and I couldn’t be around due to my Chemotherapy #31 happening at the same time. I wasn’t super worried about the surgery because it is fairly routine and low-risk these days, but I was a bit worried. My father is built from pretty tough and resilient stuff. I think this is the first time I can think of where my father had a surgery or any kind of sickness at all. I’ve always thought of my father as an immortal sort of force of nature, so worrying about him didn’t come to me naturally, but I managed it anyway. All in all we had a wonderful visit, and my father got to spend some time teaching the boys how to do woodcarving, one of his super talents.

Dad/Grandpa H. teaching the kids some woodcarving basics

Of course, after the surgery instead of the rest he was supposed to take, he was up on his feet weeding the garden and even driving to Centreville to load a lawnmower into the bed of his truck. It is impossible for him to sit still for any length of time, he is always accomplishing something from his checklists. I like to tell people that he’s like a shark and will die if he ever stops swimming. That’s my dad!

The kids hanging out with Mom/Grandma T.

Sept 26: Chemotherapy #31. This cycle, my blood work showed my carcinoembryonic antigen (CEA) levels increased 29% which says there is more cancer growth happening. I sort of expected the levels to taper off or go down if the chemotherapy is working and the radiation treatments killed the liver tumor, so this was a disappointing result. I am just hoping that enough cancer cells are also dying (which we can’t measure without a CT scan), to cause the tumor size to be stable or even for it to be shrinking. I got a dose of FOLFIRI plus Bevacizumab and went home.

This cycle caused me more fatigue than usual, but I had no nausea or mouth sores which was nice. I still attribute these easier chemo symptoms to the low-carb diet. Pooping is still never fun though. It was bad on Saturday because the caustic liquidy poops made everything irritated and painful, to the extent that my son IG had to take my arm and walk me down to my recliner so I could rest on its gel cushion. And on that weekend after chemo, I am limited by what I can accomplish because I have to stay close to the bathroom for several days.

Sept 30: Gatherings. Despite it being the Saturday after chemo–which is really the worst poopy day after chemo and I don’t like being too far away from my own bathroom–we had two social gatherings to attend. It was delightful to meet new people and have engaging conversations, something that feels increasingly rare since COVID. It was lovely but definitely took a toll on my already-low energy level, and I fell asleep in my recliner that evening while catching up on my favorite YouTube video feeds. For example, I love to follow Ghost Town Living, Eamon & Bec, Camping with Steve, Bedtime Stories, Eva zu Beck, Isabel Paige, half a million cooking channels and woodworking channels. There is something so relaxing about voices telling adventures from afar while I’m snuggled up in my sister’s purple flannel magic sleeping quilt, it lulls me to sleep most of the time (except on chemo day with those darned dexamethasone steroids! Ugh!).

October 2: Endocrinologist. I had the most amazing visit with my endocrinologist, who looked at my blood sugars and blood work and gleefully announced that he was taking me off all diabetic medications because he considers me no longer diabetic. The low-carb diet has completely controlled my blood sugar. No highs, no lows, just a solid blood glucose reading between 80 and 100 pretty much all the time. This has been one of my goals in fighting my cancer, since diabetic patients succumb to the disease earlier, and I would like to live as long as possible with as high a quality of life as I can manage.

October 5. Pool League. I have been lucky to have felt well enough to go to pool league nearly every week, though the 6-hour period of practicing, standing, playing, and tallying matches often tires me out by the end of the evening. My 8-ball game has been suffering even as my 9-ball stats have been very good. But this particular night I played Doug, who was on my pool team for many years and stopped playing league for a few years, and just returned to the league with another team. From the time I was a league n00b about ten years ago, Doug has coached me, practiced with me, and given me some dastardly time outs (his defense strategies are aggressive and effective). I’ve missed getting to see him every week. This week though, his team put him up against me in an 8-ball match and I eked out a win. I don’t think I’ve ever even won a single game against him in practice and never had to play him in a match before. He wasn’t as happy at the result of the game as I was, but he was a good sport. It was a happy, validating moment for me and it was an incredibly tense, close and hard-fought match. I expect I just got lucky that night to come out on top.

October 6: Ocean Isle Beach. I took Friday off work to catch up on some of my automobile maintenance, getting the minivan oil changed, changing out front brakes on the Smart Brabus, and taking it to get the leaking flex pipe replaced, then getting it inspected and registered. When my youngest son JH got out of school, we drove to Ocean Isle Beach to visit my sister S and brother-in-law JD at their beach house. I got the whole spare bedroom to myself and slept in absolute peacefulness that evening, I can’t remember the last time I got such a complete and restful night’s sleep. The beach always seems to do that to me.

It was finally a well-needed bit of relaxation and I realized that lately I have been deeply, terrible worn-down by all that irritating stuff you gotta do day in and day out. I am just exhausted and this last round of chemo, though it didn’t have a lot of side effects, left me with a deep fatigue (for actual medical reasons that explain this fatigue, see my paragraph on chemotherapy #32 below).

Eating breakfast at Sarah’s Kitchen in Ocean Isle Beach with my sister SG and brother-in-law JDG

We went to breakfast and spent the rest of the morning walking up and down the beach looking at shells and though there were some moments of rain, it was a perfect sunny breezy day.

Sandpiper at Ocean Isle Beach

October 12: Gary Gulman performance. My wife and I had the pleasure of going on a date to the Carolina Theatre to see Gary Gulman perform his comedy routine and book-signing tour. He is always a hoot and a holler, and I love his cerebral ramblings. We’ve seen him a few times live, and it’s always a good show!

October 12: Middle-child JJ’s Birthday! On this day we went out for a birthday dinner at our favorite Mexican restaurant and were joined by Grandma K and Grandpa J. Happy Birthday JJ!!!!

October 14: Missed an important wedding. I have long had an optimistic hope I could make the 15-hour drive up to upstate New York to attend my cousin KM’s wedding, but on doing a sort of systems check of my health, I realized that it was not going to be a reachable goal. I also would have to return by Tuesday for my next round of chemotherapy. I really wanted to see practically everyone in my family there. The previous week I was fatigued, and this week was worse. Unless I went by plane I wasn’t going to be able to stay awake long enough to keep all four tires on the road. It was a disappointment for me and I hope the family forgives my absence and that I get another chance to give my cousin KM a big, loving, supportive hug. Congratulations KM!!!

October 14: Eagle Scout Ceremony. My nephew WZ achieved the rare rank of Eagle Scout and we drove down to Pittsboro for the ceremony. It was an inspiring celebration of his hard work and dedication. WZ reminds me so much of his father, my brother in law JDZ, who will always be one of my favorite and cherished humans of all time, he lived with me and my wife–his sister–in Williamsburg for a while and died in 2008. I am so proud of his son WZ’s accomplishments and the fine young man he has become. I can’t really mention my pride in WZ without also saying that his mother JZ is one of the most invested and loving parents anyone could be lucky to have. Also my mother- and father-in-law KSZ and JPZ moved down here to help care for those 4 children, who are growing up to be such wonderful people.

October 15: Work Conference. I got to attend a work conference in Raleigh with several of my coworkers. I got to see several interesting lectures about open source solutions, meet dozens and dozens of vendors, and even run into some old faces I haven’t seen in a while!

October 17: Chemotherapy #32. My blood labs showed low red blood cell counts, hemoglobin, hematocrit, and platelets which help explain why I feel fatigued and more easily winded.

My white blood cell counts were about half the minimum values, so I was prescribed another dose of Udenyca, which stimulates your bone marrow to produce white blood cells so your immune system and healing ability aren’t so badly affected. I was also given a 25% reduced chemotherapy dose to keep my numbers from dipping too low in this cycle. Since the last time I took Udenyca I had disturbing bone aches and a general unwell feeling, they told me this time to try taking a Claritin every day for a few days before, and for several days after. Once the take-home 5-FU chemotherapy football was taken down on Thursday, after riding the side effects for a few days until I felt more normal, my wife injected the Udenyca subcutaneously into my arm. She did an excellent job, it was barely noticeable as I got the injection. My Carcinoembryonic Antigen (CEA) continues to rise linearly, this time it rose 27% from 11 to 14 meaning there is some growth of new cancer cells. This doesn’t tell us if any have been killed by chemotherapy, so we won’t be sure until the next CT scan whether things are getting better or growing worse, but these rises are sill a concern:

All in all, this round of chemotherapy was as tolerable as the last few, which were made dramatically better by following a low-carbohydrate diet.

October 20: Dryer Failure. It seems like this is the season of things breaking lately, and my electric dryer was the next casualty. I got it repaired after a few days and it was nice having clean clothes again!

October 25: JJ’s First Car! I found a coworker selling a used 2012 Subaru Impreza with only 100k miles for a great price, way under retail. I test drove it, crawled around underneath it to check out the CV joints, brakes, exhaust, oil leaks (none), and checked out the service records on CarFAX. It’s a great vehicle, so I consulted with JJ, and we arranged to purchase the vehicle with a bit of the money JJ has saved over the past couple years.

October 27-28: College friend visit. I was overjoyed to learn that my college roommate and good friend YS was flying down to spend a couple days in the area. It has been many long years since we’ve gotten a chance to visit, perhaps 8 years? He lined up a hotel, rented a car, and worked from his hotel on Friday. That night we went to the Angus Barn for a lovely dinner. We learned it can seat about 7000 people, and there were only two reservations available that same day, one at 6:30pm and one at 9:00pm, and both were recent cancellations. The food was great and we had a good time catching up. The next day we went walking through Duke Gardens, had lunch at my favorite Turkish restaurant, Bosphorus, where I tried the Chicken Doner Kebab and he had the Ali Nazik. I showed him the campus where I work, and then we went walking through Cary’s Hemlock Bluffs Nature Preserve, where a microclimate caused by bluffs allows a grove of hemlock trees that usually grow at higher elevations in the North Carolina mountains, to grow and thrive here. We had dinner at the Refectory Cafe and stayed at the outdoor tables until the restaurant closed, having an easygoing long visit over great food. I am so flattered that I have friends that are willing to go through the time and expense of coming down to visit me. I really enjoyed getting to catch up and reminisce with YS, and we were lucky to have a beautiful day to enjoy outside — not too hot or too cold, just a perfect day!

October 29: A lovely unscheduled day. I have to include this day because I made absolutely no plans for the day and spent it wandering around, getting supplies at the store, sleeping in, relaxing, sitting in nature and generally enjoying the day. It was refreshing and allowed me to approach the scanxiety of the next day with less concern and worry.

October 30: Sick and Tired, also Scanned. The chemotherapy has essentially caused my nose hairs to fall out or thin out, and this has embarrassingly caused my nose to run almost constantly. I’m always using a folded over bunch of tissues in my pocket to dab away the runny stuff, but today I felt pretty terrible, had some respiratory congestion, lots of nasal congestion, bad cough, lower blood oxygens, higher blood pressure, and then had to go to the Cancer Center to gave my CT scan done. They accessed my port, gave the the CT scan, injected a couple hundred milliliters of contrast, and scanned again. I didn’t get the results that night, but had a little trouble sleeping while worrying about the results I would get the next day.

October 31: Chemotherapy #33. We arrived at 8:00am for our appointment with the oncologist, where we learned that the CT scan results showed no increase in the size of my peritoneal tumor, which means that it is stable — neither growing nor shrinking. There were also no new metastatic tumors, and the liver tumor treated with radiation seems to be the same size though it’s too early to tell if that liver tumor’s cells have died. There is a small amount of peritoneal free fluid, which is a side effect of having a peritoneal tumor interrupting the proper flow of the lymphatic fluid in my abdomen. At some point it will get to be so much fluid that I’ll look pregnant, and they will have to regularly punch through my abdomen with a tube to drain it, but thankfully we aren’t there yet!

My CEA levels increased another 20% to 16.8. But it looks like from the CT results, the tumor size is stable.

My red blood cell counts improved somewhat, but especially improved were the white blood cell counts and neutrophils are right in the middle of the desired range! Great news! It means the Udenyca injection did it’s work very well.

We did skip the Bevacizumab but went with 100% of the FOLFIRI dose this round. Skipping the Bev will help my red blood cell counts not to go so low, and hopefully won’t badly affect the cancer growth.

Getting some work done while receiving chemotherapy

So as of today I am tolerating the chemotherapy quite well, very few side effects at all except for the usual poopy issues that FOLFIRI causes. I am also not feeling quite so fatigued, which is a good thing.

Our Little Maggie Rose

Maggie opened her mouth and looked like an angel every time you pulled her arms apart

It was on this day, 25 years ago, that our infant daughter Margaret Rosemary died in our arms at home in the bed that we sleep in every night. I still wake up sometimes and feel her presence with us in that space. She will always be here in our house and in our hearts. She is always with us, as her blue urn is in our bedroom. And one day when I die, my wish is for us both to be buried together in the cemetery on the reservation where my ancestors sleep.

Memory of Maggie at my bedside

She was born on August 10, 1997 at 1:48pm, at a free-standing birthing center, attended by nurse midwives. She was 4 lbs 14 oz, born late at nearly 43 weeks of gestation, but she needed that extra time to be strong and ready.

Shortly after her birth, we named her and filled out details of her birth certificate while her APGAR score was determined, and the score was worrisome. I know, because the midwives chose to never share that information with us. I know they didn’t want to cause a panic, but the thing about panic is that it always arrives eventually.

This picture of our “little peanut” was taken shortly after her birth

A doctor “stopped by” to have a look at her, and we were told she would be taken by Life Flight to the nearest Neonatal Intensive Care Unit. As Maggie’s mother wasn’t in any fit state for travel, I went with Maggie to the hospital. After hearing the words “Life Flight,” I sort of expected a helicopter even though I knew it was only a short trip to the hospital. I’ve never gotten to ride in a helicopter, and I’m not exactly sure that I ever want to. Maggie was bundled up and placed in a small lucite container with tubes and oxygen connected, as though she was a tiny E.T. being whisked off to a government lab for study. We were loaded into an ambulance and drove casually to the hospital, I don’t think they even put on the flashing lights.

We arrived at the hospital and the NICU staff explained they would evaluate her, hook her up to IV fluids, and generally do things that parents would find alarming. Frankly, they didn’t want me present because people freak out. I am not the freaking-out type, but they wouldn’t know. So I sat by my lonesome in the waiting room, contemplating what other surprises lay in store ahead. By the time a baby is born, her parents have very likely laid out at least a vague game plan for who she would be. Maggie would have her own ideas about who she was. She would have a real knack for kicking your plans in the butt and teaching you how to live life on her terms.

As I sat in the waiting room feeling kind of sorry for myself, a family of about 8 people came in and held hands in a circle to begin a prayer. They didn’t pray though, they just paused and looked at me, and I realized they left an opening for me to join hands with them. Without a word, I got up and joined them and they prayed for their loved one and their recovery, and also kindly prayed for me and asked me to name the loved one I was praying for. These were really the first people Maggie was introduced to.

After about an hour I was collected and taken into the NICU to find our daughter connected to tubes and oxygen. The NICU doctors explained that there was concern about her heart from chest X-rays and doppler flows, and it appeared that there was a correctable problem called a Patent Ductus Arteriosis where a tiny shunt between heart and lungs normally shrivels up when the lungs start processing air. Before too long, Maggie’s mom arrived and we both got to hold her and learn how to do Kangaroo care — placing the baby on our bare skin for warmth and contact.

In the ten days that followed, every day revealed new problems: confirmation of the Patent Ductus Arteriosis, discovery of a Ventricular Septal Defect and an Atrial Septal Defect, neurogenic bladder, muscle tone problems, and feeding and swallowing issues. A karyotype was ordered because the pediatrician suspected a genetic syndrome, and days later the diagnosis came back that Maggie had a genetic anomaly called Trisomy 18, or Edwards’ Syndrome. Most Trisomy 18 babies do not survive the birth process, and of the survivors, more than 90% of Trisomy 18 babies do not survive their first year of life.

We had a troublesome meeting with a genetic counselor who only seemed to be saying that if we had undergone prenatal genetic testing, we could have avoided this “problem” which was deeply upsetting. You just don’t tell the parents of a beautiful baby girl their daughter would have been better off aborted. I was very put off by this and asked questions that would better serve our circumstances like, how should we prepare to care for this child? What will her needs be? The genetic counselor seemed to be of the opinion that Maggie would be a vegetable, which also wasn’t very helpful.

We had discussed at great length during the pregnancy that despite being raised Catholic we thought it might be more meaningful for us not to baptize our children as babies — after all, God has no grandchildren. But faced with Maggie’s dire situation, we called for the priest from the nearby Catholic church to drop into the NICU and baptize our daughter. I do believe that sacraments are a celebration in a time and place and in the context of a community, of something that is always true. It is always true that God wants to save his people, therefore I have always believed that unbaptized people are always welcome in heaven. Performing a baptism is enveloping that salvation in a community of love so that everyone becomes a participant in the salvation of the baptized person, whether child or adult.

It puts me in mind of Black Elk Speaks, where Black Elk explains that if you have a dream or vision that is good for the community, you should dance it with everybody and tell the story so that in hearing it, everyone will, consciously or not, bring the dream to reality.

So we baptized Maggie in the NICU with a Catholic priest, who afterwards gently reminded us to have our mountainside wedding convalidated in the Catholic Church. Always good to have your bases covered I guess.

The baptism was like magic. Maggie started doing so much better and the NICU finally started to talk about us taking our daughter home. We had to get a special lying-down car seat for her, and we were especially nervous about how to keep her alive. She needed around-the-clock care. We had to learn how to put in a nasogastric and orogastric tube so that we could feed Maggie breast milk, since with her heart running a constant marathon, breastfeeding would be difficult if not impossible since she needed to breathe. We also had to learn how to massage her neurogenic bladder so that it would empty and not cause urinary tract infections.

Our little peanut comes home

And before we were even quite ready to take off our training wheels, we were driving our baby home and looking at each other nervously. But having Maggie at home was so much more serene and relaxing. We had to sleep in shifts because we had to follow a strict schedule of feeding, changing, and engaging with the baby so her heart would get enough calories for her to grow and not waste away.

Snuggling with Maggie
Happy Family

Also once we were safely home, all the family began to drop by for a visit. Maggie charmed every single one. She had a way of looking absolutely lovingly at whoever was holding her. She was just a bundle of love.

My Mom, Maggie’s Mom, and Maggie

We were getting really comfortable with the day to day details of caring for our daughter and tending to her needs. It required us to both be fully capable parents, and we were often exhausted, but we learned to take over and give each other breaks to see a movie, visit friends, or go grocery shopping. I can’t tell you what a powerful life lesson that was. In retrospect though I was a sweet person, I was not mature enough to handle caring for a child and a family. In very short order I had to learn to be supportive and helpful. I think if my first child had been anyone but Maggie, I would never have been the father I was to my other three kids. I certainly was overly career-oriented and didn’t put much emphasis on work-life balance before Maggie.

Before having our child, my wife and I interviewed pediatricians. To tell the truth, I was less engaged at that time so she did almost all the legwork, I just had to show up and look pretty. We decided on a pediatrics practice that was just amazing. Shortly after Maggie was baptized we called them and explained that our daughter had Trisomy 18 and we weren’t sure if they were prepared for that. They pretty much laughed and said, “we have a nurse A. who has a 27-year-old daughter with Trisomy 18 and she literally wrote the book on caring for Trisomy 18 children.” This was such an unlikely coincidence that I still wonder about it. The pediatrics practice was so helpful for us in seeing our daughter on short notice for her frequent care needs. We will always be grateful to them for that.

Feeding Maggie via open syringe and OG tube.

Despite both our parents living in Virginia, it seemed like every weekend one set or the other was visiting to give us relief and spend time with their granddaughter. My in-laws, Grandma K. and Grandpa J., loved cuddling with Maggie and learned whatever they needed to learn to send us out on a dinner date and give us a bit of normality in our lives.

Grandma K. and Grandpa J.

We had a vintage pram that Maggie enjoyed rides in, and it also served as a daybed where she could sleep beside our bed. We were so in tune with her breathing that if it changed at all, we would both wake up in an instant and be ready for anything. It is strange how attuned you become to even baby breaths.

Maggie in the Pram

Not unsurprisingly, Maggie was nowhere near the vegetable we were led to believe she would be. She had strong preferences and made the most unbridled expressions of joy, annoyance, or wonder. I don’t think anyone expected her to have such a strong personality.

Three generations of strong women

My sister does quilting and made the most beautiful bunny quilt for Maggie. Saying that my sister does quilting is like saying your heart does beating. She has about a thousand incredible quilts out there in the world, and this one stays in our bedroom now and always gives me a smile and warm fuzzies when I see it.

Maggie and the bunny quilt from Aunt S.

Maggie had a pose that we called “baby power” where she would raise a fist in the air. I used to wonder why she made this pose; was it a feelgood stretch or some kind of statement that the power of babies cannot be denied? Then I caught a photo of baby and mama sleeping in the baby power pose, and I realized maybe it was inherited from Mom.

Maggie and Mom snoozing with Baby Power
Maggie and Mom and their big blue eyes
I think by this time both girls are a little sick of me snapping all these pictures
Baby Power!

Uncle J.D. lived close by and this is one of my favorite pictures of him being charmed by Maggie. She was so engaged with people, and would just stare into their eyes exuding love and admiration. It comforts me often to think of them together in the Sky World, Uncle J.D. going exploring with her and teaching her all his earthy and pragmatic life wisdoms.

Maggie and Uncle J.D.
Uncle J.D., Maggie, and Maggie’s Mom

Maggie loved sleeping on my chest, despite the fact that I burn like a furnace and we would both get sweaty. I would worry about her temperature regulation, and would also be super self-conscious about not falling asleep myself. So I spent a lot of long hours watching my little baby sleep. If she was fussy it always comforted her to be warm and snuggled up. To tell the truth, I can’t think of many times that she wasn’t being held by someone, and she made it quite clear that that was her preferred state of things.

Maggie continued to grow and thrive against the odds. There were some difficult times, like when we had a big hospitalization where an out-of-control urinary tract infection left her weak and needing serious medical care.

The almost-hourly blood draws left her low on blood and needing a transfusion. It was stressful and a very touch-and-go time, but the hospital staff were always hopeful and encouraging and helped keep all our spirits up.

But Maggie was a fighter and pulled through to be her bright, sparkling self in no time.

As Maggie grew to more than 10 lbs, we were told she would be big enough to tolerate surgery to close her Patent Ductus Arteriosis. The hospital surgeons ended up deciding that it wasn’t moral to subject her to the suffering of a surgery and its recovery, if her quality of life wasn’t ever going to be that high (because, vegetable). As a result, her heart struggled to get enough oxygen so we ended up with an oxygen concentrator giving her blowby oxygen to help keep her comfortable.

Maggie got bigger and spent more time awake and engaging with her family and her environment. We had a bassinet beside our bed and we stopped putting her in the crib in her own room. We were just too attuned to her breathing and sounds to be comfortable not hearing them. Our cat Turbo would sleep on the shelf below Maggie, and was shockingly never attempting to get into the bassinet with her. He seemed to guard her when she was sleeping.

Baby Power!!!

After a hospitalization her health situation became more dire. Without surgery to fix heart issues and her continuing to grow thus making the heart issues worse, her systems were all becoming strained. Urinary tract infections, antibiotics to treat them, and greater nutritional needs were taxing her more and more.

Grandma K. hanging out with Maggie

Kermit was one of Maggie’s favorite things to look at. She would study him carefully.

In the end, Maggie had a severe bleed in her stomach (ulcer), that led to her quickly deteriorating and passing away on December 6. My parents were down that weekend to help out, my father was raking the yard, my mother was cooking, and none of us were ever going to be ready for the moment. I remember being inconsolable when she died, and we held her for a long time until our friend M, a funeral director, took her from us. Or maybe we took her there. I remember both things happening.

25 years later, I remember all the good memories and don’t visit the bad ones enough for those memories to be vivid. After 25 years now, I have to say grief doesn’t get better, and my heart always goes out to all parents that have to grieve for their children. For me, I embrace it, I remember the anniversaries and birthdays, I wrap myself in a blanket of happy memories and in doing so, I move to a place of thankfulness where I celebrate their memory always.

Now I just feel incredibly lucky to have shared a life with Maggie Rose, she was an exceptional person and I learned more valuable life lessons from her than anyone might have expected. Especially, after Maggie I disabused myself of the notion of having expections of who my children will be, what they will do. I have faith in them that they will find themselves, and I will be the support beneath their feet and the encouragement they need to be whoever they want to be. Make all choices with LOVE and persevere.