Jody’s journey – fighting cancer
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January 2023 | December | October/November
The March 16th Fundraiser at OCC Road House
(Bert’s Harley-Davidson – Clearwater)
THANK YOU page
GoFundMe page setup by our daughter Ashlee
Jody has passed away – 9-4-23 at 2:47PM
Added 9/18/23 – Jody’s Tribute Page
8-31 THU
Went to see Jody about 12:30. She was really laboring to breathe. I noticed they didn’t have the o2 machine hooked up to her. When the guy walked in I had them check it. Even with the o2 seeing at 15, she was reading 80. NOT good.
They put a more solid mask on her. That put her up slightly. Then wanted our consent (me and Jody) to put on somesort of ventilator. This is not a life support system. This is only to help her lungs. I believe he called it a BiPap, or something like that. Ash and Nate got there and she looked it up and it’s a ventilator.
Anyways, right now vitals are good. They weened her down a bit. It was 60%, and they went down to 40% and she was still mid 90s. Tomorrow AM they will pull off the mask to see how her o2 holds up.
8-30 WED
Went to the hospital at 8:30AM and it’s closed for the day 🙁 No visitation until tomorrow even though I looked on the website before I went and it said ‘open’ limited visitation.
I did get in touch with the hospital to check on Jody. They said everything is coming along. She’s still at 60LPM to get her in the 90s for her oxygen. This is still pretty high. Hemoglobin looks good after the transfusion along with her electrolytes.
I also wanted to make sure they were giving her Dexamethasone. They said there were giving her Methylprednisolone.
40MG of this. I was giving her 6MG of Dex, so they are pretty close in comparison as far as dosages. I think the 40MG equates to about 8MG of Dex.
I’ll have to read more on the Methylprednisolone, seeing if this is a good alternative for Dex to keep the brain inflammation down.
I just so happen to get on the HCA website and again and it showed ‘open’. So I called and they were just taking down the tarps that covered the doors. So I went to see Jody from 12:30 until 5. Sure glad she wasn’t back at the care center in Shore Acres. They are completely flooded.
Work was closed today, so I edited and uploaded a couple small vids for my YouTube channel. First one I’ve done since all this crap started. Jody recorded my previous video and a lot of my others 🙁
I lost power at the house from about 8 until a little after 9.
8-29 TUE
Riding the storm out myself tonight. We’ve been through many of these since 1985. I’m sure Jody is in good hands, but I sure will miss her 🙁
I went to see Jody about 1:30. Ash stopped by earlier. Jody seemed ‘okay’. Lot’s of the contractions and the pains. I sure hope this is just pneumonia. They had her up to 6LPM to get her to the mid 90s for her oxygen level.
Northside did just call (5:30PM) and said her Hemoglobin is down (again) so they called and wanted approval to proceed.
As far as the insurance, I’ve thrown in the white towel. I have well over 5 hours on the phone lines into ‘why’ they didn’t just leave me on the policy application w/o insurance for me and leave her on the policy with insurance.
PLUS since she’s on her own policy now, I can’t discuss her policy without her consent. Geeze. She can’t work, she can’t pay. I AM the payee. Way more to it than this, but anyways, I lose….She’s up to $80K in the hospital in one day, so I will have to pay the $8600 deductible 🙁 If I pay in full I get a discount. YAY). Never did I imagine have to paying back to back to back deductibles in less than a year, then it starts all over again in Jan. If you have 2 people on a policy and one drops off, the other should not have to start on their own policy.
Bad timing on all this to, I spent hours looking into a new ‘plan’ with Ambetter. Maybe $850/mo payment (for just her) and a $3000 deductible, but due to the timing, the deductible payment will go toward the new current plan (that just started 8/1) or unless they could hold off and I change and Northside doesn’t apply until after September 1st…..probably just too risky. I’m sure they’d get me one way or the other.
To top if off, even on the Ambetter website it shows that I need to make the Ambetter payment, along with the Marketplace payment for one month (September). I fought and fought. It’s SOoooo hard to understand all the foreigners that work at the call center for Ambetter. Nevertheless, I went ahead and paid both payments to cover September 1st – September 30th, JUST in case. I just can’t risk it at this point.
The girl just didn’t quite understand what was going on.
On the advice of my mother and the hospital, they feel I need help. Both mentioned Hospice. So going on their advice (Ash in on it to), I will have Hospice out and evaluate. This by no means means right now she is on her way out or we think she will pass very soon, but they see that I have a lot going on and they feel Hospice can and will help.
Hospice called and I talked to ‘Bryon ‘at the Clearwater location. He mentioned, they will only be here a few hours a week to start with. He was surprised to hear I’m all set up as far as a medical (hospital bed), 3 walkers, bedside commode, exercise equip….
I am a member of a forum and I posted about her stop walking 4 1/2 weeks into the radiation, most (really all) agree that they think that her walking and being scared to standing is attributed to the radiation and not the tumor itself. The pounding on the brain which made it swell caused this.
I’ve thought this all along! 2 weeks after our birthdays (February 10th) which she walked fine into Carrabba’s, she couldn’t walk again
8-28 MON
Another very rough night for Jody (and me). Worse than Saturday. Hardly any sleep from 2AM on and I don’t think Jody got any. She kept yelling over and over and over that she was in pain but she couldn’t pinpoint where it was coming from. Like Saturday, I saw some twitches in her right side. This seemed to be where the pain is coming from.
O2 is VERY low. The lowest I saw was 68 and that was this morning a little after 5. She took off the o2 tube, but I kept putting it back on her. Right now it’s 6:15 and she seems to not having the twitches ‘as much’
02 set at 3LPM
I may just leave her in bed until I get home at about 2. She needs some rest and I’m afraid to move her at this point.
I had my father come over and keep an eye on Jody for fear that she would remove the tube. We just couldn’t get the oxygen above 85. I ended having her picked up by a wheelchair van. I was afraid of her having a heart attack loading her in her Jeep Grand Cherokee.
Jody got there about 12:30. I followed them to the hospital. Ashlee showed up about 3:30 or so. After all the tests, they concluded that she had pneumonia (again). Really this is best case scenario. I was thinking it could be blood clots (again) or sepsis (again). So I’m ‘hoping’ she’ll be out in a couple of days. Bad timing, I guess…as the hurricane is supposed to start rolling in tonight. I’ve done nothing to prepare. I think I’ll go out and get gas (I forgot my gas can). I’ll do that later. Going to go by to see Jody right after work about 1 or so.
8-27 SUN
Jody seemed to sleep better last night. Ashlee got the idea to use the heating/vibrating pad on her side.
O2 lower than yesterday (75). 77 sent her to the hospital last time. I put the o2 machine tube on her, but EVERY time I put it on, she’ll take it off during the night. I can down at 2AM and sure enough, it was off laying on the floor.
I put it back on her. Hope this helps her.
Took Jody/Lucy for a walk down to the canal. Hung out there for a bit.
Exercises
20 minute leg and arm workout (9AM)
8-26 SAT
O2 pretty low this morning (82). I put her back on the machine.
Jody seemed to be in pain all last night, yelling out, owe, Ouch, oh sh1t, oh man….I came downstairs at 2, but she couldn’t tell me ‘what’ was bothering her. At one point she mentioned her stomach, but later on, she said no. She also mentioned right above her stomach.
I stayed downstairs to keep an eye on her. She kept saying she was having pains over and over. It’s about 8AM now, and she seems a little bit better I guess. Unsure what is bothering her.
Long night last night/this morning….. Long week. Not much sleep this week between Jody and figuring out how my new job will work out
Got her out of bed. Not ‘too bad’. We did our normal exercises. She seemed a little better
We met my parents for lunch today. I hadn’t gotten Jody in the Jeep lately (a couple weeks or so), so I was very nervous about doing this as she can’t stand and take the ‘one step and ‘lift the foot’ that helps get her into the Jeep. This is critical to getting Jody up and into her Jeep.
Well, sure enough I did have a very tough time getting Jody in the Jeep. She basically collapsed (I thought this might happen). I got her back in the chair. Our neighbor Tony happened to be out front and saw this and came over to help. Between the both of us, we did get her from the wheelchair into the Jeep.
We met my parents, had a great lunch at Mamma’s Kitchen. GREAT Taco salad.
When we left, I just went ahead and planned on just carrying her weight from the wheelchair to the passenger seat since I figured she could not do that ‘one step’ that would help get her into the Jeep. This is only a couple feet, but it’s awkward and she has to be lifted up into the seat. Just planning on and expecting this and doing this really helped me. Harder to do for sure, that one step and the lift of the left foot REALLY helped, but is seems she cannot do this, so planning ahead and knowing this helps. Don’t know how many times I can do this though, I’m 61, not 41 lol
After watching her this afternoon at home, I have come to the conclusion that all the little pains might be spasms on her right side.
Ash and Nate came over late afternoon and brought over Sonny’s. Good to see them.
Jody actually did very good. She was in her wheelchair most of the time. She did show signs of those spasms but not as bad as earlier.
The early AM started off very rough, but ended on a good note. I’m sure we’ll both sleep good tonight (almost 10PM now)
I’m thinking of selling or trading her Jeep to get a lower type car. This will be easier getting her in, but a little harder getting her out. Maybe another Charger or Challenger (I had a Charger SRT392 at one time which they quit making in 2018)… Easier to get her in and out….and of course faster to get her to the appointments. 😉
Exercises
20 minute leg and arm workout. (9AM)
8-25 FRI
Meeting at work today about the bodyshop (me, John, Ryan). Still in the works.
No exercises today
2-2-0
8-24 THU
Got Jody out of bed about 6:30. Did our normal routine (toilet, change, donut/chocolate milk breakfast, brush teeth…exercises). Instead of putting her in the recliner, I put her back in bed as I wasn’t comfortable putting her in the recliner today. She seemed very tired. Kept an eye on her like I always do on the camera.
She did open her lunch box and at most of everything.
Appetite for both lunch and dinner are still great….which is still a very good sign.
Her walking ability for right now seems to be gone 🙁 I really have to hang onto her a certain way just in case she wants to ‘go down’. I basically support all her weight and carry her to the bed, or wherever.
She’s gone down a few times in the past month, and it’s not fun at all, and quite the workout for both of us along with being stressful, especially me, since she can’t ‘help’ me get up off the floor. When she ‘goes down’, I have her and she goes down very slowly, I just sometimes am not prepared for it. I try to always be close to something that I can carry her to.
I “hope” the exercises help to eventually get her to walk (even with a walker!!!), if they do great, but these are really to make sure her blood flows as we don’t want another bout with blood clots where she almost died (see 3/8 I believe it was). She does have a IVC in her and taking Eliquis, but once she runs out, we’re going to have to go with the generic brand. I’m fine with this.
The people at Florida Cancer Center are great
I joined a new FB group about GBM. Some encouraging posts. Some are amazing.
Exercises
25 minute leg and arm workout. (6:45AM)
20 minute leg and arm workout. (6PM)
2 minute challenge (6:15PM)
2-2-0
8-23 WED
Jody woke up very alert. Great to see! Makes my day to see her like this 🙂
20 minute leg and arm workout. 6:45AM)
4 minute challenge (7:15AM)
2-2-0
8-22 TUES
Jody seemed to have a better day. When I got home about 2, she was awake and alert. She stayed up and watched most of the Rays game.
No exercises today.
2-2-0
8-21 MON
Jody seems to have declined some. It seems to be getting difficult for her to make any decisions. When I leave, I normally leave the TV or radio on.
I asked her which she would like left on today, and she couldn’t make up her mind. I’ve noticed this the past week or so that even the simplest decisions are tough on her.
She can hardly take any steps anymore, even with her using a walker and me holding her. I don’t know if this is due to the tumor, or the inflammation (or both). Very sad to see. Next MRI in early September will let us know if the tumor is still is still in check. She really has 2 tumors, which is rare. The other one is smaller tumor, that they’ve been concerned with since the beginning. We’re expecting the worst, but hoping for the best. It still won’t be easy to take the news whenever the tumor starts going again. Glioblastoma is not only is a tumor, it has ‘fingers’ growing off it, which makes really impossible to stop. At least she is not in pain.
I may decide to bring Jody into my work’s group health insurance. I like the idea of having ‘gap’ insurance.
It’s pretty risky as I’m not having luck with insurance choices lately. Below, you’ll see where I was assured that ONLY I would be removed from our our previous policy. NOPE, once I was removed, they cancelled Jody’s and started her on her own policy. So ANOTHER $8600 deductible.
I got my first taste of this when I went to pick up her blood thinner prescription, and it was over $500. Before, it was covered since I already had the $8600 covered. I talked to 4 people, got names, reference numbers and dates, both on health marketplace and Ambetter.
Both mentioned NOW that once the holder drops, anyone else, on that policy drops to. Why didn’t you mentioned that when I asked that I wanted to make sure that only I would be dropped off the policy.
Very frustrating!
Work, we’ll it’s still in the works, and progressing VERY slowly. I figured I’d be painting in a booth by now. They say 2-3 months for the booth to be built along with permitting….that puts us toward the end of the year. I hope Jody will still be around to see the grand opening.
We have our 38th anniversary coming up October 5th
The holidays, my parents birthdays. Our birthdays are both on February 10th
Sadly, Jody’s friend Rebecca, her husband has passed away from cancer this morning 🙁
Both Jody and I went to see them up in Palm Harbor a few weeks ago. He was clearly in a lot of pain.
They were both at Jody’s fundraiser March 16th
Exercises-
25 minute leg and arm workout.6:45AM)
3 minute challenge (7:30AM)
2-2-0
8-20 SUN
Wheeled Jody around the neighborhood to the far end of our subdivision, down Starkey and back.
Almost thought of walking to Waffle House, but I had to bring Lucy home. She was whupped.
Nice breeze out today!
Jody slept most of the afternoon. Kind of concerned as I put her in her bed at 1. I NEVER do this. I make sure I keep her out until at least 4:30, but I wasn’t getting good vibes today. The exercises, the challenge and the walk I think really tired her out.
Next MRI coming up early September.
Exercises-
20 minute leg and arm workout.(8:45AM)
4 minute challenge – FIRST TIME THIS LONG (9:30 AM) About 45 seconds of this time, I didn’t hold her. She stood only holding onto me.
2-4-0
8-19 SAT
Not much done today. Got Jody out of bed into the recliner. No exercises. I worked on the house.
I needed a little break.
2-4-0
8-18 FRI
Exercises-
25 minute leg and arm workout.(6:50AM)
2 minute challenge (7:25AM) About 30 seconds of this time, I didn’t hold her. She stood only holding onto me.
2-4-0
8-17 THU
Jody having a good day. She’s actually had a good week.
Exercises-
25 minute leg and arm workout.(6:50AM)
15 minute leg and arm workout.(5PM)
2-4-0
8-16 WED
Exercises-
20 minute leg and arm workout.(6:45AM)
3 1/2 minute challenge (7:15AM) – Longest one. She stood up while I held her for 3 1/2 minutes. Her longest time. Also, some of the time, I let go and she would stay up holding onto me. Breathing was very good on this one!
2-2-0
8-15 TUE
Exercises-
15 minute leg and arm workout.(7AM)
2 minute challenge (7:25AM)
2-2-2
8-14 MON
No appointments this week.
Ashlee picked up Mimi (Jody’s mom) and they came over for a couple hours. She brought lunch over (Mother’s Subs – Jody loves Mother’s Subs. She used to drive from work to buy us lunch every once in awhile).
Ash said they had a nice stay.
Exercises-
15 minute leg and arm workout.(7AM)
2 minute challenge (7:25AM) Stand while I hold her. She struggles and is very nervous about standing, but she did it!!!
Walked approx 10 steps (not much, but these days this is alot for Jody. I really had to hold her as she was scared to walk)!
2 minute challenge (6:15PM) – 2nd time today
2-0-0
8-13 SUN
Not much going on today. Took the camper back to storage. Jody slept in. I put her in the wheelchair until about 2. Then she fell asleep. I went ahead and put her in bed.
Normally I like keeping her up and out of the bed until 4:30 at the earliest, but lately she’s been very tired
0-2-2
8-12 SAT
Brought the camper home yesterday to make sure everything works and air it out. No issues 🙂
I’d like to figure out a way to get Jody in and out. Her Drive Nitro walker is about 2″ too wide for the doorway.
I know Me, Ash and Nate are getting the itch to go camping again. Even if it’s local.
Exercises – 20 minute leg/arm workout (8:30AM)
I tried getting her up and walking with a walker and it just wasn’t happening
I wheeled Jody down to the our favorite spot to walk, down by the canal. Lucy always goes with us (9:30AM)
2-0-2
8-11 FR
No exercises this morning. Things didn’t go as smoothly as they normally do. Also, Jody’s O2 was down to 87.
I have her on the O2 machine today.
Finally got a chance to show Jody, Ash, family, and friends the shop.
Still no spray booth, compressor, but I’ve started doing very small jobs.
OCC Road House Museum – Thursday 8/10/23
8-10 THU
Nate’s sister is coming down from NC. Heading to OCC Road House this evening
Exercises –
Early morning exercises, legs and arms, 20 minutes Stretch band, arm lifts with 5lb weights, pull bar, leg lifts…. (7:00AM)
2 minute challenge (she stands and I hold onto her) (7:30AM)
8-9 WED
Going to try something different. Going to put Jody in the wheelchair instead of the recliner. I’m hoping that she will wheel herself around. I normally wouldn’t do this, but I have a neck brace to hold her head up when she takes her nap.
I’ll put her lunch(box) on the table and wheel her close to it so it won’t be a long ways to go.
I was looking out in the other room and I actually saw Jody trying to get out of the recliner in the living room. I thought she was actually going to do it. Scared the crap out of me. So I ran in there (good 25′ run), hit my ankle on the dining room chair lol, just to make sure there wasn’t a mishap.
I helped her up, but she pretty much got up on her own. Very proud of her. She hasn’t done tried this as all. I’ve always had to fully lift her up. Hopefully these exercises are helping out on her strength (and hopefully her confidence to stand and walk)
Exercises –
Early morning exercises, legs and arms, 30 minutes Stretch band, arm lifts with 5lb weights, pull bar, leg lifts…. (6:45AM)
Walking w/ walker – 10 steps to wheelchair – not real stable at all 🙁 (7:20AM)
8-8 TUES
As of right now, no appointments this week. First time in at least 3 months.
We are not doing therapy and more as I plan on picking up where they left off (and more).
We did a total of 6 sessions I believe it was.
Jody woke up a little more alert than normal. She’s done good for the past week or so.
Seems her back issues are much better to.
Exercises –
Early morning exercises, legs and arms, 20 minutes (7AM)
Stood while I held her for 2 minutes straight (7:30AM)
A little bit of walking with walker (approx 10 steps, 7:35AM)
10 minute leg/arm exercises (5:45PM)
Stood while I held her for 2 minutes straight (6PM)
2-2-2
8-7 MON
Reversed smoke/grilled a steak and cooked potatoes. We ate at the table that I recently swapped with our pub table.
Nice to eat at the same table 🙂
Exercises –
Early morning exercises, mainly legs, but did arms as well, 20 minutes (7AM)
Stood while I held her for 2 1/2 minutes straight (4:30PM)!
1/2 lap to get into wheel chair (approx 20 steps, 4:45 PM)
Had her walk using a walker from her wheelchair which I rolled her into the foyer and she went back to the bed (approx 20 steps, 7:15 PM).
Not real stable on both walks, but at least she did walk. I had to make sure I was holding her at this time.
40 steps total
2-2-2
8-6 SUN
Woke up to watch the soccer game. Great game, USA lost though 🙁
I went shopping while Jody slept. Home by 9.
Ash and Nate came over about 4:30 and brought pizza.
Walking sessions
1/2 lap to get into wheel chair (approx 20 steps, 10 AM)
First time – Stood while I held her for 3 minutes straight!!!
2-2-2
8-5 SAT
Woke up and got out of bed pretty much herself onto walker. I had to sit her up to do so along with raising the bed.
Went over to my parents in Seminole about 11:30. Had an awesome lunch. Jody did great.
We’re staying downstairs in the other room together. 2nd time this year (see below)
Going to get up early AM, hopefully about 5AM to watch the women’s FIFA US soccer game.
Every day before I leave for work, I put the TV on channel 13 at about 7. Normally a soccer game is on so I’ve been getting into that. Watching the games while getting Jody settled in.
Tomorrow is the US playing in the FIFA World Cup. Go US.
Walking sessions –
1/2 lap to get into wheel chair (approx 20 steps, 9:30 AM)
1/2 lap to get into the other room into bed (approx 20 steps, 7:30 PM)
2-2-2
ST
8-4 FR
Got up early. Jody stood while I held her for 1:30 (6:45 AM)
Jody stood while I held her for 2:50 (5:30 PM)
No steps today
2-2-2
8-3 TH
Vanessa and Sabrina drove over (our grand-daughters) and stayed with Jody for a couple hours.
They made some cupcakes. So very nice.
Later afternoon. Got Jody to stand up and stay up for about 30 second intervals. Did this about 4 times.
Very few steps today
We listened to our wedding song together. Even Jody got teary eyed – Kenny Loggins – Forever
So many great memories through the years – 37 years ago
2-2-2
8-2 WED
ALL Staff meeting at work. Always good, uplifting and encouraging
Even though no booth, compressor, air lines, lighting…..I am doing my first job. I told them I’ll do jobs, but only small ones since the overspray will be everywhere.
So mark this day, my first paint job at berts is in process. Only an old dented up split tank. I have to do 4 colors inc pinstripes.
Someone mentioned they saw “Bert’s Body Shop Coming Soon” on the LED board out front. Sure enough. I saw it today.
Jody was tired doing therapy. Faye has done a great job considering the circumstances.
Walking…well, it could be quite some time.
I’ll go as long as Jody is able to and I can get load her in the car to go and back safely.
She was sleeping in the car on the way home. Hard to get her to bed. She was whipped.
I like CORA. I had to start the COMPLETE process over again with the insurance debacle.
That is a complete mess and I was lied to by several people. LISTEN TO YOUR RECORDINGS, you’ll hear I clearly said “assure me that only I will be removed from the policy and NOT Jody….NOPE!!!! Jody started all over. New $8600 deductible, co-pays. I spent 3 hours calling marketplace and Ambetter. You can hardly fricken understand the damn foreigners anyway.
Ashlee and Nate are out of town. Vanessa and Sabrina (grand-daughters) are coming over to see Mami tomorrow at about lunch time. No appointments tomorrow.
Walking sessions, not much these days. BUT late yesterday, she stood up, held onto the walker by herself for 1 1/2 minutes.
2-0-2
8-1 TUES –
Oncologist appoint today at 2. At least we hope so. Got a call from the oncologist while we were at therapy that not only my insurance was cancelled, but Jody’s was to. NOT good. When I called our insurance and the marketplace before, they assured me that Jody would remain on the policy. So I’ve been back and forth with that since late yesterday. Hopefully she does have the appoint today. This will be for a bone marrow biopsy to see if her body is producing platelets. 9 nplate shots did nothing.
I’m ready to paint at the shop (new benches, everything setup, paint all back organized, but they are not. Not much progression. Still no booth, no compressor. It seems they are having a contractor look at the blueprints.
added 5:54PM
No oncologist appointment today, cancelled, due to the insurance debacle.
I switched to group health insurance through Bert’s, so
Her insurance starts ALL OVER since I was the primary holder. Deductible, activity, and copays start all over.
I had asked several service reps that if I wanted me to be dropped off the policy, she would remain on it, and I wanted to be assured of this so I’d have no issues.. They all said she would remain and you would be removed. YOU WERE WRONG….
NOPE, it doesn’t work like that. You guys were wrong!!!
Another $8600, third time in less than a year. Life sucks sometimes.
The harder I try, the further I fall behind.
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