Jody’s journey – fighting cancer
Monthly Updates
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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
6-30 FRI
Ash came over and spent time with Jody while deep cleaning our house.
We then all met at a place called Courtside Grill in Clearwater. Really great food. They said they go there all the time. This was our first time.
Walking sessions –
1 lap around stairs (approx 40 steps, 7:00 AM)
6-29 TH
Looking into getting Jody into therapy and rehab facility to see if they can do more to get her to walk.
I can walk her (with walker) but she still fights to even stand up. Possibly someone ‘new’ can motivate her and work with her more.
I found the CORA rehab facility on Park, Blvd. Looks like it get’s good reviews.
Took the Suburban to Quaker Steak for an hour or so. Then went to OCC until about 8:30. Just went by myself.
Walking sessions –
1 lap around stairs (approx 40 steps, 7:00 AM)
6-28 WED
Walking sessions –
1 lap around stairs (approx 40 steps, 3:30 PM)
6-27 TUES
Oncologist appoint today at 2. Ashlee is coming over.
Labs and nplate. Kamath is gone for 10 days.
Walking sessions (good to see her at least trying again. She’s still weak) –
2 laps around stairs (approx 80 steps, 7 AM)
6-26 MO
Much better morning. Jody got up at 6:30. Went through our routine. It makes my day when things go fairly smooth and she can get some steps in.
Tomorrow, another appointment with the oncologist. Nplate shot and labs.
Didn’t realize those Nplate shots are $5000-$10000 each. The one week she spent in the hospital a few weeks ago $150,000+. No wonder health insurance is so high.
Walking sessions –
1 lap around stairs (approx 40 steps, 6:45 AM)
2 laps around stairs (approx 80 steps, 5:45PM)
6-25 SUN
Jody slept until 12:40, woke up and had lunch. Ashlee and Nate had a condo for the weekend on Indian Shores so we went and spent a few hours out there with them, Couldn’t take Jody on the beach due to the wheelchair, but we did sit by the pool most of the time.
It was hard getting Jody in and out of her car. She seems to be very tired and getting weaker.
No steps again today 🙁
6-24 SAT
Took the 66 Suburban out for about a 20 mile cruise.
Jody’s watching baseball today. Not much going on. She slept in. Probably no walking.
Cut back the steroid dosage slightly.
I found out a guy we met a May 9th that had the same brain cancer as Jody (GBM), passed away 🙁
Jody and Tony are both 57.
I don’t know when he passed. His mom Nikki emailed me and said she hadn’t heard from me since her last email saying had had passed. So apparently she had emailed me before.
So sad. Super nice guy.
Me and Jody went to meet him at his mom’s which happens to be right up the road from us on Starkey.
His passing really hits home and makes all this so real…. I have to make sure that I enjoy every minute I have left with Jody.
So sad. GBM is a horrible cancer and a very grueling journey to go through.
Walking sessions – 0
Started 4-0-4
6-23 FR
She simply is very tired and weak. She’s bloated quite a bit. Jody’s oxygen is good. Heartrate is a little high for her.
She’s been sleeping quite a bit during the day. Her sister Kelli came over from about 9 until 4. I got home about 2:30.
I got my Bert’s shirts. Yay, but Jody overshadows everything right now 🙁
Nothing else matters. Fighting through all this.
Walking sessions –
1 lap around stairs (approx 40 steps, 4:00 PM)
6-22 TH
OCC Road House Grill tonight! Great time. We only stayed until about 8:30. Jody was very tired.
Walking sessions –
2 laps around stairs (approx 80 steps, 7:00 AM)
6-21 WED
Got Jody up and about early.
For about the past 5 days, Jody has done very good. She’s more alert, more attentive, and a little more like her old self.
She still cannot get up by herself 🙁 Still a little afraid to walk and very weak from the steroids. Cannot walk without a walker. Though I do have her walk, It’s still a lot of work to get this done. I hope she improves fairly soon. Would love to see her walk again.
Good to see her a little more herself.
The swelling is also starting to go slightly down
Received my first check in over 3 months!!! Finally!
Walking sessions –
2 laps around stairs (approx 80 steps, 7:15 AM)
6-20 TUES
We have to be at the SS office in St Pete between 8-9 to talk about SSD. Been there twice already along with 2-3 hours of paperwork. Quite the process. This time I will have Jody with me. This time we meet with the person that makes the decision. Figured I’d stop by the oncologist on the way home so Jody could get her shot and lab work done. Spent 1 12/ hours there. Finally got to work at noon. Glad Bert’s is willing to work with me!
Walking sessions – 0
4-0-4
6-19 MO
I thought we had an appoint at the oncologist today. We get there, I get Jody in the wheelchair, we go up and they were closed – Juneteenth day!
Heard today, July 1st will be the day we start emptying out Bert’s “Barn” and dig in on the bodyshop.
Walking sessions –
1 lap around stairs (approx 40 steps, 7:15 AM)
Started 4-2-4
6-18 SUN
Happy Father’s Day
Met up with my father at Mamma’s Kitchen in Seminole early AM. Had a nice breakfast.
Went for a long walk down 102nd to the canal with Jody (wheelchair) and Lucy
Took my ’66 Suburban out. Been awhile. Good to take it out. Drove over Nate and Ashlee’s house on Belleair Road
Ash, Nate, and the girls came over for the game and dinner
Jody really had a great day! Talking and laughing! Good to see!
Walking sessions –
1 lap around stairs (approx 40 steps, 9:15 AM)
6-17 SAT
Ash took Jody up to Countryside Mall to do a little Father’s Day shopping. Jody always got me something for father’s day 🙂 So nice of Ashlee to do that.
Walking sessions – 20 steps (walked without walker with assistance to table and back)
6-16 FR
It’s been harder recently to get Jody to walk as they increased her steroid dosage from 2-2-2= 6 mg to 6-6-6 =18mg in the hospital which will make you weak. Plus she’s been on the steroids since the beginning of the year.
Jody’s dosage will slowly have to be weened down and still have to monitor her. The steroids help keep the inflammation down around the brain.
I HATE seeing her not being able to walk on her own 🙁
Jody’s sister Kelli came over to watch Jody and work online
Walking sessions –
1 lap around stairs (approx 40 steps, 7:15 AM)
Started 4-4-4
6-15 TH –
Orientation went great. Held at Bert’s Black Widow – Port Charlotte. Left at 9, got back at the house at 4. about 1 hour 40 minute drive each way.
Jody’s sister Kelli came over to watch Jody
Walking sessions –
2 laps around stairs (approx 80 steps, 7:15 AM)
6-14 WED –
Ashlee came over about 11:30 and watched Steel Magnolias (Jody’s favorite movie), and spent some time with Jody.
Big day today…Monday’s MRI results gone over today. Please keep us in your prayers and thoughts.
Ashlee will go with us. I’ve dreaded this for the past 2-3 months. Especially since they never got her back on the 5 day chemo pills.
Good news. The results show that Jody’s tumor has not progressed! Really the best news we could possibly hear.
Next MRI in 3 months.
Walking sessions –
3 laps around stairs (approx 120 steps, 7:30 AM)
2 laps around stairs (approx 80 steps, 4:30 PM)
6-13 TU –
Oncologist appointment today at 2:30
This went good. Platelet level is up to 53. Needs to be 70-80 before the chemo pills (5 Temodar pills consecutive days @ 250MG, then 3 weeks no pills).
All my assets that were purchased by someone was purchased by Bert’s Barracuda. We were supposed to pick these up today, but did not. They said they could send 1-2 guys after I left at 1:30. Unsure if they did or not.
6-12 MO
She got up out of bed by herself onto a walker. 2nd day straight
MRI was done today
Results WED at 2:45 – Prayers for decent news.
Oncologist at 3 tomorrow.
2 laps around stairs (approx 80 steps, 7 AM)
6-11 SUN
I went shopping and did not get Jody up until about 9:30.
She got up out of bed by herself onto a walker. She hasn’t done this for a few weeks.
Jody is having a great day today. Talking more than normal. Memory good today.
I did raise the bed higher so it’s easier to get up. So far, this is the only thing she can lift herself off of.
Walking sessions –
3 laps around stairs (approx 120 steps, 9:45 AM)
6-10 SAT
Took Lucy for a walk, wheeled Jody to the end of 102nd by the canal and back.
Me, Jody, and Elaine went to the Rays game at 4:10. They lost
We sat in the 3rd level Party Deck.
The Rays ended up losing.
Went to Ferg’s before and Doc Ford’s after
Walking sessions
0 steps today
6-4-4 dosage
6-9 FR –
Walking sessions
2 laps around stairs (approx 80 steps, 6:30 AM)
6-8 TH OCC tonight 🙂 Me, Ash, Nate, Jody, and Elaine!!
Had a great time. Caron (Nate’s mom) and Eddie joined us. Showed them my office along with what will be the new bodyshop!
Walking sessions
2 laps around stairs (approx 80 steps, 7 AM)
6-7 WED
Got up at 5:30. Got Jody ready. Had to rush out as they had a meeting with everyone. I introduced myself along with a little bit of ‘about’ me (and Jody)
Stood up in front of about 30 people. Very Tough to get through talking about Jody…I did make it through.
Everyone was very supportive. Hugs from some of them
Walking sessions
2 laps around stairs (approx 80 steps, 6:30 AM)
Ready to get back in the heat!!!
6-6 TU Got up, got Jody ready. Went into work, but that wasn’t until 8:15. I’m just going to have to tell them I can’t make it in until 8:30. It’s just way too tough to get up at 6AM, get all things going, do our routine, get Jody situated, make 2 meals, and make it by 8 AM.
I did do it, but it was non-stop. Just can’t do it. A LOT of work, and things have to nice and smooth in order to make it that early, but it’s a challenge. Sometimes things go slower than I plan on, and you cannot rush Jody. I try to do other things between, but it’s still non-stop. It doesn’t help that we were gaining momentum and her walking was doing very good, then the fall happened and 6 days in the hospital (not due to the fall, but her oxygen level)
We had weened her down to 4MG steroid dosage and she was losing a bit of the swelling. In the hospital they raised it to 18MG which is the most she’s had ever. She quickly swelled back up. Hope to ween her back down as quick as possible. With Dexamethasone, you can’t just stop, you have to slowly back down the dosage.
I’m am very thankful that Bert’s is willing to work with me on everything. They basically told me, do what I need to do to make sure Jody is okay. I’ve been basically working 8 until 2. I get a guaranteed salary per month no minimum hour requirement. I also help out by working a few hours at home during weekends for them.
Trust me, I am NOT a computer, behind the desk in AC type of guy…. especially at a strange place. Give me work and the heat, and I’m good
Walking sessions – (walking sessions will start out slow again. Hope to pick up quickly. I’ll try to do before and after work. I’m sure Ashlee will come over and help here and there.)
2 laps around stairs (approx 80 steps, 7AM)
6-5 MO Got up early, got Jody ready, went to work. Left at 1. Took Jody to the oncologist at 2.
Ashlee was a big help and went with me.
Got the meds more or less straightened out
Got another nplate shot.
Busy day.
Walking sessions
2 laps around stairs (approx 80 steps, 3PM)
6-4 SUN – Spent most of the day at the hospital. I was going to leave at noon when the head nurse Rachel informed me that Jody was due to be discharged between noon and 4. So I stayed until about 1:30. Jody was discharged at 4:30. The main reason Jody stayed there was not due to the fall, but they had found her oxygen level was low. So they kept her there and worked on it. Still high 80’s low 90’s.
GOOD to have her home though !!! I vow to do what it takes to care for her.
6-3 SAT
Another day at the hospital. Went to see Jody at 9:30. Left at 4:15. She was a little off in the morning. Probably not much sleep last night. The lady next to her had a nasty cough going on.
Ash and Vanessa came by about 12 or so. Stayed until about 3.
We all watched the Rays game. I stayed until the end 🙁 Not a good game from Beeks.
Ashlee happened to know one of the nurses, and I also talked to the case manager and they are going to see if they can get her discharged asap.
The notes by the doctor says they definitely said she needs to go to rehab, I said, she is not going to rehab. I’ve been there, done that. I do a much better job than they did and I do not want her laying in bed 90% of the day.
We we’re supposed to go to the Rowdies game tonight (courtesy of Sheryl), so this is out as well 🙁
6-2 FR
I got hardly any sleep last night as it was a mentally ROUGH night. Had to get up and walk around 3-4 times during the night. Got up at 6, went to work 8-2. Went to see Jody afterwards at the hospital until about 5. She was doing good. Nice to see her and that smile of hers.
Was hoping she would get discharged but did not..
They say her oxygen level was too low, but yet, she may have to be on oxygen when she leaves…so, okay, I’ll make sure that she get this. Though she hasn’t had ANY problem up to this point and even in the hospital without the oxygen, I don’t see problem.
I was there when they did the therapy, yes, she’s weak, could not sit up very well, could not get up and walk on her own, she’s been laying in a bed for 5 days now. Of course she will be weak!!! They mentioned if she can’t walk tomorrow they will recommend her go to rehab…sorry, she is NOT going back to rehab and I firmly said this. When in rehab, the therapy guys waited for me to get there EVERY DAY to help them work with Jody.
They were afraid if she cannot walk, she will just lay there which is not good at all, I explained that she does has never since the last rehab lay in bed all day. I wake her up, get her out of bed, do our routine like take pills, eat a small breakfast, brush teeth, change, walk, and that is the last time she will lay in that bed until at the earliest 4:30. I make sure she walks every day.
She goes places, goes to Rays games, goes out to dinner, and is active and is happy. In other words, she “moves” and is active!!
I also gave them a tip that when I get her up, I raise the bed (they had lowered it), and raising it, will give her a little bit of a jump start as she’s already ‘almost’ up. Works great!!!
After the nurse mentioned that she might have to go to rehab, I gathered pictures and videos of Jody walking with walker and standing without walker. He was impressed and would note that for the main Dr to see. Damn straight you will!!!
As far as the oxygen, she was FINE as far as I’m concerned, she broke her steps record the week before – see below (she did sit every 40 steps or so) but she was breathing fine and I, nor Ashlee saw anything off.
So tomorrow is Sat, Sheryl, which we’ve known for a long time was Rays host and worked her way up in the Rays Org. was kind enough to get us Rowdies tickets for tomorrow night. I thought for sure she’d be out by now.
I’m hoping we do not have to cancel, but it sure looks like it 🙁
Love you all – Living hour by hour!
6-1 TH
Worked my first day 8-2. Went to see Jody in the hospital. She will not be discharged today.
Hoping she will be tomorrow. She was admitted Memorial Day
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