Stacy’s Story

Site created on September 13, 2010

9/22/10 I walked into pre-op. I emerged from surgery just able to wiggle my toes and most of the tumor still in me. Subsequent radiation killed the tumor with no more damage. Lynn's love, your support, rehab experts and gallons of my sweat have made great progress. Retired in June 2011 from my 40+ years of school leadership. This site invites you to share the journey with us. You can find explanatory captions with the photos. Sorry they are in kind of random order. Please enjoy the wonderful guestbook messages and add your own.
Lynn & Stacy

Dateline:
- early '10 odd spots of leg numbness.
- July '10 left leg numb; right foot numb; can't feel urine passing. MRI brain clear / no multiple sclerosis
- Aug '10 Tumor discovered at T-11 inside spinal cord. We move from Trabuco Canyon to Mission Viejo; I go back to school. Lynn renovates entire new house
- Sep '10 Surgery at Cedars Sinai. Tumor only partially removed. Crippling neurological damage. Can't turn over in bed without help.
- 32 nights in hospital, mostly on rehab unit. Lynn commutes to Cedars daily, finds right outpatient rehab, makes new home handicap accessible.
- Nov '10 Home. 5 radiation treatments kill remaining tumor. 3 day/ week outpatient rehab begins
- Dec '10 I return to work, load my wheelchair independently in car and start hand control driving.
- Jan '11 Application for disability retirement. Transition to 3 days work / week.
- Feb '11 First steps without walker or other support
- Mar '11 Ankle fracture in bathroom fall
- Apr '11 Ankle cast 4 weeks/ walking boot 4 more weeks. Lynn directs rehab during injury holiday from PT
- May '11 Rehab with PTs resumes
- Jun '11 I retire. Career began 1970. Pensions & health insurance from NJ, NY, CA and SS keep us afloat.
- Jul '11 First air travel since surgery. Visit in MA with Graham, Jean, Megan & Lauren. Kayaking, climbing stairs, Red Sox game whale watching.
5 radiation sessions to zap second tumor.
- Aug '11 Stacy rear ended on 405. Car totaled.
- Sep '11 Weekend trip to Temecula. Wine tasting.
- Oct '11 walk without assistance over ground, in water and on elliptical machine.
- Mar '12 trip to Red Sox spring training in Florida.
- Road trips to Jim Dana's in Redwood City and Merrilee's in Tucson.
- May '12 played Juror #9 in 12 Angry Men at The Attic Theater.
- MRI shows tumors unchanged. No longer growing.
- Jun '12 transition to 2/week rehab sessions from 3/week.
- Jul '12 start acupuncture.
- Oct '12 directed Pirates of Penzance at Attic Theater
- Nov '12 urinary system fails. 24/7 catheter for a month+
- Dec '12 TURP (transurethral resectioning of prostate) surgery successful. Catheter gone.
- Dec '12 10 meter unassisted walk in 28 seconds. 7 minute walk on treadmill at 1.3 mph. 6 minute walk on crutches at 1.3 mph. 45 minutes longest endurance walk on crutches.
- April '13 visited Graham & Jean, Lily and Tim in Boston, Joe and Ken DeVoid in NH. Managed Jet Blue and rental hand control car. Great seats at Fenway. In Boston area when the marathon bombing occurred.
- June '13 played Grandpa in You Can't Take It With You at The Attic.
- June '13 New rehab doctor Suzy Kim at UCI.
- July '13 Cut back to rehab once a week. 24 Hour Fitness on my own 2-4 times / week. All strength machines, walking in pool, on treadmill and unassisted next to the dance barre in the group exercise room.
- August '13 Directed HMS Pinafore.
- October '13 played Judge in Inherit the Wind.
- November '13 cane or nothing to get around the house. Took out the ramps inside the house. Took out the chair in the shower. Road trip to visit Merrilee, Gail and Ed in Tucson.
- December '13 10 meter unassisted walk 23 seconds (5 seconds better than last year). With crutches 8 seconds. 6 minute crutch walk 908 feet. Go in stores using just the shopping cart for support. Doing rehab and acupuncture once / week. 24 hour fitness 2/ week. Half mile crutch walk in neighborhood 2/ week.
- March '14 USC Prof Fisher visits Precision Rehab and makes dramatic changes in my gait. First half mile on crutches in under 20 minutes. Walking unassisted around the house all the time.
- March '14 Directed One Flew Over the Cuckoo's Nest at The Attic Community Theater.
- June '14 Dr. Emily Holmes, DVM, begins her first job as veterinarian at animal hospital in Sacramento. We enjoy a great move-in weekend her and Steve's new apartment.
- Aug '14 Ziad Dahdul, my PT for 3 years leaves Precision Rehab. I cut back PT to once every other week. Rehab on my own includes 2 walking days and 2 strength days at 24 Fitness weekly. With daily stretches, mat work and neighborhood walks at home on the day between gym workouts.
- November '14 - added hand controls to the Jeep, so we took the more comfortable car to see Emily and Steve at their apartment in Sacramento, Jim and Dana and Kit on their houseboat in SF and Ian in San Luis Obispo.
- December '14 - stopped using cane in the house. First walk to the corner and back just holding Lynn's hand.
- December '14 - directed The Mikado at The Attic Theater. Show goes on for 4 weekends in March.
- Tapering off baclofen and trying out gabapentin to deal with cramps and spasms. Trying to find a place to get a set dose of marijuana (pill?) to try. Very encouraging results lately with MS patients and very young epilepsy patients using a marijuana pill.
- January '15 - first half mile walk on cane at Murray Center.
- Lynn stage manages the Mikado. First show we have done together. Looking forward to directing Guys and Dolls in June - Aug for performances in September.
- June 2015. Stopped going to Precision Rehab, my rehab spot since November 2010. Also stopped acupuncture since it was in the same facility.
- Changed to Complete Balance Solutions in Mission Viejo, saving half an hour on the trip to rehab each way with no freeway driving at all. Focus shifts to balance from gait training. DPT Mary uses kinesio tape to calm spastic muscles. My skin doesn't mind it for many days at a time.
- Lynn and I hold auditions for Guys and Dolls and get a huge turnout. Nice comments from the theater people on my improved mobility.
- Found the high CBD/ low THC marijuana that has helped seizure patients and MS patients. Seems to give me a little more proprioception but not much relief from cramps and seizures. Depresses my libido. Decided to discontinue it for now. Still waiting for the silver bullet on cramps and spasms.
- July 2015 trip to visit Graham, Jean and family splitting a vacation rental house on the coast of Maine. Kayaking. Lobster.
- July 2015 changed rehab to Complete Balance Solutions. New DPT Mary Pangotti is amazing. New focus on balance brings some fresh approaches to my rehab. Back to twice a week. Still doing 24 Hour Fitness on my own twice a week as well.
- Off baclofen. Using only gabapentin. Then off gabapentin and back on baclofen. Nothing directly treats the spasticity. Meds just ease some of the discomfort.
- July-Sept 2015 Lynn and I directed "Funny Thing Happened on the Way to the Forum" at the Attic.
- October- November 2015 lots of heavy yard work as we complete a turf removal water saving project in the front and back yard.
- Thanksgiving 2015 with newly engaged Emily and Steve at their home in Sacramento with Steve's parents also there.
- 2016 will be "The Year of the Left Leg". A lot of rehab focus on getting my left leg to bend and swing straight forward instead of whipping the leg with almost no knee bend in a semi circle to take the next step. Still recovering sensation, control and strength in my butt, so that my gluts do more of the work they are supposed to when I walk.
- 2016 I have added AFOs (leg braces). Different from the braces I had in 2010-2011, these help my left leg swing straight forward and keep my right ankle from rolling as much.
- 2016 I directed Oliver! at The Attic.
- Traveled to Seattle to see a Red Sox game and visit with Chip and Jill.
- Published book through Amazon. Recorded the Audible version myself.
-2017 Lynn and I started homeschooling granddaughter Emma
-Muscle tear in right quad, side effect of taking Cipro for urinary infection. 2 months of reduced activity in rehab and independent workouts.
-Trip to Florida to share a vacation with Graham, Jean, Megan and Lauren. Met their Medfield friends the Donner Family also spring breaking in Indian Shores. Modified body surfing with Graham and Jean guiding me on the waves.
-First solo trip. Flew to NH to be with Joe after his brain surgery.
-Walked Emily down the aisle using a cane and danced with her at her wedding.
-PT Mary Beth left Complete Balance. I transition from 2/week to 1/month rehab sessions. More gym days.
2018 Rehab once every few months. Gym on my own every other day. Walking an average of 3200 steps per day.
Continue to homeschool Emma. Support her rapidly rising gymnastics career with many rides, trips to meets and more.
Played Danforth in The Crucible. Directed Pirates of Penzance. Left the Attic Theater after 5+ years. Acting/ directing in 10+ shows.
Won a 6 figure ADA case. Things will be better at 400 facilities I'm not a liberty to disclose.
Flew solo to be with Joe a few weeks before he died from brain cancer.
Flew with Lynn to grandson Josh's graduation from Elon in N. Carolina. And again to NH for Holmes reunion and a great week on Lake Sunapee.
Enjoy a 5 star bathroom -- Lynn's renovation project with heated floors, towels and handicap accommodations that look like design flourishes.
First cruise since the tumor. 3 nights to Ensenada, Mexico and back to Long Beach. Didn't feel the ship rocking while walking on trekking poles.
40th wedding anniversary.
November trip to Chicago to see Lynn's aunt Yvonne and cousin Keith also sister Nancy and husband Dennis. First venture into back east winter. Brrr.
2019 Home nurse, cook and chauffeur after Lynn's hip replacement surgery. All my work to keep able and strong pays off.
At a new gym a lateral elliptical machine makes a huge difference. Butt strength and balance greatly improved.
2019 Dr starts me on testosterone supplement to help muscle development. Gain 5 pounds of muscle and do almost all the machines at the gym with increased resistance. Now a 70 year old who can do a non-stop set of 70 push ups.
Emma continues homeschooling with us and wins first all around, floor and beam at a tri-state regional to top off her season. Awarded Gymnast of the Year at Azarian (her gym).
I can now walk straight sideways or backward in the pool with my hands on my head and closing my eyes for as much as 6 steps at a time.
I use trekking poles to get around stores and community errands. I stand up straighter and walk closer to normally, but I use a cane if I need a hand free to carry something. Power scooter at malls, schools, airports and amphitheaters. Trying to increase my pace, keep my eyes up and weight off my hands. When there is a shopping cart near my parking spot, I can leave the crutches in the car and make my way using the cart as my support.
For year 2019 averaged 3803 steps per day. Up from 3083 (same digits -- amazing) for 2018. 23% gain.
Trying CBD oil under tongue. No noticeable effects. Staying with baclofen 20 mg 4/day, 100 mg gabapentin 8/day, 125 mcg levothyroxin 1/day, 0.6 cc testosterone 1/week, 20 mg generic Cialis 1/day. Supplements: multi-vitamin mineral, quercitin, nexium, beanaid, coconut oil. Generic valtoren (like ibuprofen in a gel) for arthritic hands and hip flexor inflammation.
Feb 2020 - discontinued CBD. Made it through renovation of kitchen, family room, dining room and living room. Designer Lynn created a masterpiece.
We self quarantine from Covid-19. Lynn's freelance design business flourishes. One project after another. I'm rewriting a play to make it current with Covid-19 realities. Active in campaign from local Congresswoman Katie Porter, Biden and 6 Democrats running for Senator in various states. Writing letters, making phone calls, donating.
Emily and Steve have bought a house. Seeing them this fall will be our first major road trip since Covid. They are also modifying a van to create their own custom camper van. Lynn collaborates with the design, power tool advice and some of the specialized window coverings and upholstery.
We continue to work with the Los Ninos de la Calle con Wendy Foundation, share many wonderful times with Zach and our nearby grandchildren, and enjoy visits with Emily and Steve. Look forward to visits from family / friends far away. Come see us!
Dec 2020 - Average number of steps per day 2020: 4983 / 2019: 3803 / 2018: 3083 / 2017: 2716 / 2016: 2527. Proud of the improvement in 2020 with gyms closed much of the year.
2021 Gyms reopen gradually. Glad to be back walking in water. Lynn super busy with landscape and interior design projects. Wrote a young adult novel, seeking publication via agents and writing contests. 12 sessions of PT with Mary Beth regains most of my losses from gym closing last year. Longest 6 minute unassisted (no canes, poles, walker or anything else) walk in 11 years: 673 feet.
11/2021 Finished my play Too Nice, found a great cast and produced a YouTube video of the play.
12/2021 Bouts of depression are scaring me. When I'm tired I sometimes fall into deep, dark times when I feel my efforts at rehab are hopeless and I'll never get better.
12/2021 Returned to rehab specialist Dr. Suzy Kim for help with medication and her suggestions in general. Eliminating Gabapentin, Stacking heavier doses of Baclafen earlier in the day. Waiting for insurance approval
to try Botox in my hip flexors to reduce painful spasms.
2/2022 Started working with Dr. Gary Baffa. He's a psychologist with a couple decades as head of the pain management service at St. Jude Rehab. He is now on his own. He is helping me a lot. We talk weekly.
3/2022 Finally get Botox approved after multiple appeals to Aetna. Dr. Kim injected the tops of both quads. Within 48 hours the level 8 spasms in my hip flexors were gone. My left knee bends more easily and I walk with better balance. Walking without touching furniture or using a cane even in the middle of the night.
4/2022 My PT Mary Beth Pongetti is selected to demo the ZeroG machine the St. Jude Rehab center has acquired with heavy donor support. She chooses me to be the model patient to demo the machine at a special event for doctors, Providence Hospitals fundraisers and some major donors. Will post videos on YouTube. The event raised $2 million.
6/2022 Unfortunately, the second Botox shots did not do much for me.
7/2022 Left shoulder hurts with exercise, sleeping on my left side and using my cane. MRI says rotator cuff tear. Surgeon says I'm compensating well. Holding off surgery for now.
7/2022 Doing PT with Mary Beth Pongetti for my shoulder. After the shoulder sessions, doing more PT for my spinal cord injury again.
8/2022 Running for City Council. Holmes4Council.com
9/2022 A PT test I normally do in 20 seconds took a whole minute. PT recommends a new MRI.
9/2022 Lynn turns 80, our 44th Anniversary.
10/10/2022 Long battle with Aetna to get MRI approved. Finally done. No new problems. Whew!
11/2022 I lost the election. Don't know how I'll be involved in local politics in future.
12/2022 Neuro PT ends. My balance and stamina are in decline, my insurance is still good and yet they discharged me. Doubt I'll do neuro rehab again.
11/2022 Continuing in counseling with Dr. Gary Baffa. Helps a lot. Dealing with constant pain and loss of function.
12/2022 I averaged 5000 steps a day 2 years ago. Averaging 3000 now. Balance also worse.
12/2022 Found a new neurologist. 2 special blood tests. Electrodes all over my legs measuring nerve connections. Near normal.
3/2023 Successful surgery L rotator cuff. Months of arm in sling and rehab ahead
3/2023 Use power chair while arm in sling. Balance not good enough with just the quad cane
4/2023 Lynn and neighbor John set up crossbar and harness over my treadmill so I can get my steps in everyday without having to hold on with my hands. Hands have painful arthritis. L shoulder still in post surgery quarantine.
5/2023 Month in sling, 2 weeks of movement only by PT, 2 weeks of controlled movement on my own, beginning of strength training
5/2023 Webmaster for new enewspaper MIssionViejoGuardian.net
7/2023 Trip to NH with Lynn. Visit with Graham, Jean, Meghan and Lauren. Red Sox game. Show at New London Barn Playhouse, Holmes Reunion at the 150th anniversary of the Holmes Farm in Langdon, NH.

Newest Update

Journal entry by Stacy Holmes

Somewhere around 1962 the BBC ran a weekly comedy series for two or three years that poked fun at current events and the media stories of the day. The attached clip "A Consumer's Guide to Religion" is taken from one of the shows. Saturday Night Live of today no doubt took some inspiration from the forerunner news comedies like TWTWTW, the logo for the full title of the show That Was the Week that Was. The show was also referenced by the even more cryptic TW3.

I have thought of That was the Week that Was many times in the past days.

It all started Tuesday September 5th around 7 PM. We received a call from one of Emily's friends that she had been airlifted by helicopter to a hospital in Reno, Nevada. She was at Burning Man, an annual 10 day festival out in the desert. The event has grown over the years to some 70,000 participants. https://en.wikipedia.org/wiki/Burning_Man.

Emily went into anaphylactic shock, which is an extreme allergic reaction. She has had these extreme life threatening reactions before. In her first year of veterinary college when she was studying in Scotland and discovered the common sensitivity among Koreans to Scottish heather. She carries an epipen to inject epinephrine when an attack starts. Without it, anaphylactic shock is often fatal. The extreme allergic reaction closes the patient's airway completely.

All we knew was that she was intubated so that she could be kept breathing with a ventilator machine and was taken by helicopter to Renown Hospital in Reno.

Within the hour after the call we were on our way to Reno. It is a nine hour drive, but no flight could get us there sooner. There are no flights to Reno after 8 PM even with all the big airports around us. Much of the drive is on remote two lane highways. I knew we had to get to Emily as quickly as possible, but I couldn't imagine how we could drive for 9 hours straight. But we did. After I drove for 5 hours, Lynn relieved me for a couple hours. Fortunately, it was over divided highway with hardly any other vehicles. 

As I finished the last two hours into Reno, I drove through a sleepy small town without a light on anywhere. Nothing was moving. Then a cop lit me up. He asked if there was some emergency. We had a story and a half to answer that question! Sometimes it helps to be old and white with a boring driving record. We were off again with just a verbal warning and dragged out of town at 25 mph.

The hospital allowed us to visit Emily  at 4 AM when we finally arrived at the hospital and we were somehow still conscious. We found Emily as you seen in the attached picture. She was unable to speak with the breathing tube down her throat and her hands restrained. When she saw her mother come in the room, the tears flowed as I have never seen Emily cry before. Lynn is such a pillar of strength and reservoir of hope for all of us every day, but especially so in a moment like Emily's battle back from the brink of suffocation. Her good friend Sonia who had saved her life was with her in the Intensive Care Unit.

We learned that the epipen Emily was carrying was out of date. It was ineffective when Emily injected herself.  Sonia reassured Emily that the medical team from Burning Man would be there soon. Emily softly answered Sonia, "I don't think I have that much time." Sonia realized she had to save Emily's life somehow without the Burning Man medical team; their help wasn't going to be on time. Sonia went outside screaming for help and miraculously reached the ears of someone with an up to date epipen.

The next injection with the stranger's fresh epipen bought enough time for the  medical team to reach Emily and stabilize her enough for airlift. Once at the hospital, Emily was in the ICU. She had the breathing tube removed by mid morning on Wednesday.  That evening he moved to a semiprivate room on a regular ward. Burning Man had suffered from torrential rains and flooding, Reno was full of dirty, battered Burners escaping the flood. All of the hotels were booked, but the casino hotels had space. We ate a good meal and stayed overnight at a casino near the hospital. 

Thursday Emily was discharged. Sonia drove Emily back to her home in Berkeley using Emily's camper van. She had outfitted the kitchen, sleeping area and everything else in the van during covid. We found Hotel Shattuck in Berkeley when the Marriott Residence Inn was full. The Shattuck is now our favorite place to stay. An old line hotel with charm and character, it's cheaper than the Marriott, has a much better restaurant and a location closer to Emily's house.

Emily's best friend Jessica came up to visit and guided Emily through the maze of Kaiser insurance to get the air lift and hospital care covered. Jess also motivated and guided Emily to set up further treatment for rehab as well as for tracking for down all the triggers of the anaphylactic shock reactions. 

I got back to the gym Saturday and thought I was getting back to my life. Emily was safe. She was setting up next steps at Kaiser to put things right with her life. My body was still able to do a gym workout after missing a night's sleep and 3 long hauls in 4 days. We both expected our bodies to complain for the physical abuse of the past week and felt rather better than expected Saturday. 

Then Lynn woke up Sunday will a killer headache, a cough and a fever. The home CoVid test said positive. The Urgent Care doctor started Paxlovid. A day later I was positive and on Paxlovid. 

The meds reduced the symptoms. I hope they stay gone after the 5 days of meds. I finished my last dose this morning.  Lynn finished her meds yesterday. I was downtown getting migraine meds for her this morning. 

TWTHTW

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