Jody’s Journey – May updates

Jody’s journey – fighting cancer
Monthly Updates
September | August | July | June | May | April | March | February
January 2023 | December | October/November
The March 16th Fundraiser at OCC Road House
(Bert’s Harley-Davidson – Clearwater)
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

5-31 WED
Had a meeting, then went to see Jody at the hospital. She was doing much better today.
They did a blood infusion. Hemoglobin is still low.
Antibiotics for the bout of pneumonia to help raise her oxygen level.
The back of her head from the fall looks terrible, but they say there is no internal bleeding and she’ll be fine.

I left the hospital about 4:30.
June Updates

5-30 TUES
Trip to SS office (again)
Trip to primary Dr’s office.
Appointment at oncologist at 2 – cancelled, but they may go over to Northside (across the street) and give her the shot there and check on her. Updated, they did not, new appoint TH at 2
Stopped in to see Jody about 9:30. She’s doing fine. Tired though. She will not get discharged today.
They want to monitor her oxygen level. Her oxygen is at 74% which is pretty low
They also would like to do a MRI on Jody. No MRI was done since they feel that since they are doing another one on the 12th and the previous MRI’s were done at Bardmoor, they think they will want to do the same type of images. I wished they would have as this would have been covered under insurance and I mentioned this. The one at Bardmoor runs $450 out of pocket.
Stopped in again from about 2 until 5:30. Ashlee came down to visit about 5.
Big Bert’s meeting tomorrow AM, then go see Jody. I do hope they discharge her tomorrow.
Our host friend Sheryl at Tropicana field offered tickets to go to the Rowdies game on Sat PM. (actually she’s moved up in the Rays organization which is very well deserved)
We’ve known her for about 10-12 years now.
Rays double-header Saturday, so we’ll miss the second game, but looking forward to going to a Rowdies game. Never been to one. Jody used to go with her girl friends before she met me in 1984. VERY nice of Sheryl.

5-29 – Memorial Day
Unfortunately, Jody was walking from the family room to the living room with her walker to have lunch and her legs gave out. She had just gotten up from a 2 hour nap, so she was still a little groggy.
She went down, then hit her head. I immediately called 911 and they took her by ambulance since she’s on blood thinners and she had a big bump. She seemed ‘okay’ after about 5 minutes. Also, when they were checking her, they found her oxygen level was low, so they wanted to take her in to also have this checked out. They ran a scan at the hospital and her head is fine even though she had quite the bump on the back of her head and it looked nasty.
They had mentioned that low oxygen could be caused by a slight case of pneumonia. She was breathing fine before then, so I didn’t notice anything recent that would lead me to believe there was a problem.
She was admitted. Hope to have her back home tomorrow.

01 1

Walking sessions-
5 1/2 laps around stairs (approx 220 steps, 9AM)

5-28 SUN
Walking sessions-
Walked around the corner. Further than she did yesterday. Then walked back
Used the red “hot rod”
105 + 230 out
230 + 105 back to home.
(10AM – 11:20)
Last 40 steps, no walker. Last 10 steps, by herself. No walker, I did not hold her (I were right there though, just in case) .
670 steps NEW High!!!! (Previous high 620 5/25)

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After 335 step – record walk down the street. Then we headed back

5-27 SAT
Showtime speedway tonight with friends. On the backstretch, so we’ll be grillin’ and chillin’
Not much going on today. I did a lot of yardwork in back. We both sat out back for a while.
Jody’s doing ‘okay’. Not much walking today. I’m hoping that will help her having a good night tonight.
Walking sessions-
2 laps around stairs (approx 80 steps, 8AM)

5-26 FR
Ashlee came over and spent the day. Jody did another nice walk. She went further down the street than yesterday.
Went to a urologist appointment. Then went out for a brunch. Came back to do a bunch of paperwork.
Walking sessions-
Walked around the corner. Further than she did yesterday. Then walked back
Used the red “hot rod”
105 + 190 out
190 + 105 back to home.
(7:40AM – 9)
Last 40 steps, no walker. Last 10 steps, by herself. No walker, we did not hold her (we were right there though, just in case) .
-590 steps

5-25 Th
Jody is doing great today. Woke up and we went through our routine. Nice and smooth this morning!
45 minutes -1 hour pretty much the average.
Watching the Rays this afternoon!

The Bert’s meeting went great. 1 1/2 hour long.
Looks like I’ll start getting paid next week which is good. After 2 1/2 months off and no income, the well is getting dry.
THANK YOU again for all the donations. Without the GoFundMe and the OCC Fundraiser put on by our daughter Ashlee, along with big help from Kirsten our neighbor, I don’t know where I would be right now.
The time off has been very well spent. I’m happy with Jody’s progress. Though it’s been slow. When I think back a month ago she was no where near where she is today. I’m glad I got this time off to be able to do this.
Having therapy brought in or the care in a care center, is no-where near what I am doing right now.
I appreciate and cherish the time off so I can be with her!!

Walking sessions-
Used the walker w/ seat (Drive Nitro aka Hot Rod), walked around the corner and down the street some
105 steps to corner, 120 from corner down the street
120 back to corner, 105 back to house
Last 40 steps, no walker. Last 10 steps, by herself. No walker, I did not hold her (I was right there though, just in case) .
She walked gingerly, but hey, she walked!!! First time she’s walked by herself in 3 months!!!!

4 laps w/ walker around stairs (approx 160 steps, 545PM)
-610 steps NEW High!!!! (Previous high 535 yesterday)

5-24 WED
Early AM ‘steps’ for Jody today so she’ll hopefully will be rested up and good to go to the Rays game tonight
Big Bert’s Meeting this morning. I’ve spent late last week and earlier this week doing a layout of the bodyshop. I present the diagrams, details, and approximate costs (fingers crossed).

Heading to the Rays game tonight to meet Nate and Ash (they invited us :). Me and Jody will try to get there about 5:15 when the gates open (game is at 6:40). Our 3rd game this year. Behind the number of games we’d normally be at by now compared to the previous seasons, but this season, I feel very lucky to even be able to go with Jody. I didn’t think she’d even even be here.
Definitely off this afternoon. Jody is struggling and I’m struggling to get Jody ready 🙁 Glad we started at 3.
Walking sessions-
Walked to neighbors driveway and back twice (approx 160 steps, 8:30AM)
Last 10 steps, she went without a walker but I held her.
Got home from the Rays game. She walked from the car to inside the house (approx 20 steps)
-180 steps

5-23 TU
Walking sessions-
7 laps (CURRENT HIGH) w/ walker around stairs, unassisted by me, (approx 280 steps, 7:45AM)
Going to see if we can finally break 500 today
3 laps w/ walker around stairs (approx 120 steps, 2:30). She was very tired walking. I had to follower her to make sure
Walked from living room to porch and back in using a ramp / no walker, but I held her (approx 15 steps, 3:30PM)
5 laps w/ walker around stairs (approx 200 steps, 515PM)
(high is 490 on 5/29/23)
-535 steps NEW HIGH!!!! She was totally exhausted. That’s is the maximum I see her doing for right now.

5-22 MO
Woke up and was very alert. Got out of bed quickly (normally a struggle).
Had the oncologist appointment early afternoon. Jody’s platelet level came up some (47), but still too low to start back up on the chemo pills.
Walking sessions-
3 laps around stairs (approx 120 steps, 7:30AM)
First Time – walked a full lap on the last lap without a walker but held onto me
Walked into the oncologist office with walker. Walked in the back as well this time. Also walked out. (approx 100 steps)
-220 steps

5-21 SUN
Took Jody to see the inside of the what could possibly be the new Bert’s Body Shop. They are letting me use the whole empty building butting up to the adjacent unit. This is great to hear!!!

Jody is still ‘weak’ while walking. I don’t like to see this, especially 2 1/2 months after radiation.
Appointment tomorrow afternoon with the oncologist. I hope her platelet levels came up.
Last week was 41. Up from 31 due to the nplate shot. This makes 2 shots. She’s due for another one tomorrow. They can’t restart the chemo pills until up to about 80. Right now, she’s 1 1/2 months behind on taking the chemo pills. So any growth of a new ‘finger’ of thge tumor can be happening right now
Walking sessions-
2 laps around stairs (approx 80 steps, 9AM)
First Time – walked the last half lap without a walker but held onto me
-80 steps

5-20 SAT
Walking sessions-
Walked to neighbors driveway and back the other way, then toward the cul de sac (approx 80 steps, 8:30AM)

5-19 FR
Took Jody out to run some errands
Went to Pier 60 tonight with Ash, Nate and Vanessa. Sabrina works at a shop on Clearwater Beach so we stopped by to say ‘hi. Watched the street performers and walked through the vendor section on the pier.
Stayed at the beach there until about 9:30
Walking sessions-
Walked to neighbors driveway and back (approx 80 steps, 9AM)
-80 steps

5-18 TH – Good day for Jody. Met my parents at 11 at a local restaurant. Jody walked in with walker. Last time we went into the same restaurant Jody was in a wheelchair.
Ashlee came over about 1 and stayed until 4:30. Always great when she comes over. I honestly don’t know what I’d do without her.
Walking sessions
Car to inside restaurant and out – Approx 50 steps 5 laps around stairs (approx 200 steps, 3PM)
Out front from our driveway to our neighbors driveway and back (approx 80 steps). Last 15 steps are so was just holding onto me. No walker
-330 steps

5-17 WED –
She’s a little off today on thinking. Just a bit, but noticeable.
After 3 months (Mid Feb last time upstairs), I finally got her upstairs. She took a nice long shower, and slept in a ‘real’ bed.
Walking sessions
Walked her furthest. She did stop a few times (170 steps one way, 130 steps back – had to push her a bit.)
-300 steps

5-16 TUES
Had to take Jody to Northside. Her hemoglobin was very low so they did a 1 unit blood transfusion.
Got her ready and there at 7:30AM. Home at 12. We came home and crashed.
Second appoint went okay… I guess. The Dr, got a phone call as soon as he walked in the room and seemed very pissed at someone on the phone. They did a scan of Jody and the machine was broken. So they had 3 people in the room. That’s when the Dr. started talking loud on the phone (eventually went out of the room, but you could hear him yelling then, F-him, F-that).
He eventually came in with some sample pills to try for the next 2 weeks.
A weird appoint to say the least.

Not much sleep for either of us last night.
We both slept downstairs
I slept in the hospital bed and she slept in the recliner (she was already out, so I left here there)
appoint this afternoon at 3:15 – Urologist
Walking sessions
None – busy day with appointments.

Today marks the 60th day that I have no incoming money.
Thanks to to Ashlee, and all that gave to the fundraiser and GoFundMe. Without it, I’d be sunk. We’re well over a million right now.
Soooo tough to tear away from being a total caregiver to work and caretaker.
It’s very tough. Got to get back to work soon!!
Came downstairs to check on Jody at 1AM, then at 3:30AM
Both times she was up. Overall surprised she had a great day today. Only slept about 1 1/2 hours this morning after walking.
I had an appoint to do a drug test for Bert’s Harley-Davidson 😉
walking sessions
Walked to the corner of our street (Approx 110 to and 110 back)
Walked into Dr Kamath’s office with walker. She did use to be able to walk int normal. But this is a first without being wheeled in – (approx 40 steps + 40 steps back out)
– 300 steps
upcoming appoints
today had blood drawn at NS hospital so they can match up the type
7:30-8AM – 2 pint blood transfusion
3:15 Urologist
Monday – 1:30 Kamath

5-14 –
Happy Mother’s Day

Walking sessions
Went out with my mother for breakfast.
Ash, Nate and the girls came over and brought an awesome meal. Stayed here to watch the game
3 laps around stairs (approx 120 steps, 1PM)
1 lap around stairs (approx 40 steps, 3PM)
-160 steps
50 min

5-13 SAT
Ashlee, Sabrina and Vanessa took Jody to Countryside Mall for a Mother’s Day shopping spree.
She had an awesome time. Wore her out though. She slept for 1 1/2 hours once she got home
I took the ’66 Suburban out for about 45 minutes.
Walking sessions
1 lap around stairs (approx 40 steps, 8AM)
Outside steps (approx 90 4PM)
– 130 steps
1 hour

5-12 FR –
Jody had a good day. Slept a few hours during the day. We didn’t go out today. This is really the first day in a week or so where I haven’t gotten her out of the house. Ashlee and the girls want to take her to the mall tomorrow for Mother’s Day.
Walking sessions
First time7 laps around stairs (with hot rod, no assistance from me. She did take a break once on most laps) – approx 280 steps, 8AM
2 laps around stairs (approx 80 steps, 3:30PM)
-360 steps
40 min

5-11 TH –
OCC night. Great time. Lot’s of our friends were there. Nice to see. Great music (Stormbringer)
Walking sessions
Starting to use her new ‘hot rod’. Drive Nitro
1 lap around stairs (approx 40 steps)
2 lap around stairs (approx 80 steps)
-120 Steps

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5-10 WED
Heading to OCC Road House Grill tomorrow eve with Ash, Nate and family.
Meeting with Bert’s Barracuda / Black Widow today. NO meeting today. I did go there to pick up a lot of employment paperwork. Talked to Bert himself along with John. They actually both came out to the car and talked to Jody (nice!)

I may sell the hospital bed and get Jody a recliner that will lift her up.
I did get a used ‘lift’ recliner. We are trying it out to see if it will help Jody get from a chair to her walker.
Walking sessions
2 laps around stairs (approx 120 steps, 8:45AM). No assistance except using walker
Walked from Jeep into house, into family room (approx 40 steps)
2 laps around stairs (approx 120 steps, 5PM). No assistance except using walker
-280 steps

5-9 TUE
Meeting up with my parents for lunch.
BIG meeting tomorrow with possibly my new employer. this will be the 4th meeting
Went to meet “Tony” and his mom Nikki which live pretty close to us. Tony also has GBM.
Very nice meeting someone and talking to his mom which is also his caregiver. Both Tony and Jody are both 57.
Walking sessions
Walked into the restaurant and out with walker (approx 100 steps)
1 lap around stairs. She walked around herself with walker. I waited for her (approx 40 steps 8:30AM)
-140 steps

5-8 MON
Oncologist appoint this morning. Jody will be getting labs along with a shot to help raise the platelet level.
Currently about a 39, but needs to be close to 140 in order to start taking the Temodar (Chemo pill).
5 days straight, 3 weeks off
Received an Nplate shot at the oncologist.
Not the best day for Jody, kind of quiet, tired, a little bit out of it 🙁
Went to Culvers, and other places.
Walking sessions
2 laps around stairs (approx 80 steps) Totally exhausted after the 2 laps. Sat down and went to sleep 🙁
Came back home, Jody walked to the neighbors driveway, turned around and walked up our driveway into the house (approx 90 steps)
-170 steps

5-7 SUN
Watched the Rays game (they beat the Yankees – GREAT comeback win!)
Sat on our patio swing. First time for Jody since the probably February.
Walking sessions
3 laps around stairs (approx 120 steps)
1 hour leg and arm workout using weights
My goal is to keep her active and keep her out of the hospital bed every day until 4:30 at the very earliest.
We have a 2 story and of course she has to sleep downstairs.
-120 steps

5-6 SAT
Had my 3rd meeting with Bert’s Harley Davidson. Went great! I may have some great news coming in the very near future!!!
Came back home, picked up Jody and we went back to Bert’s OCC. Stayed from about 1 until 3:30. Had a great time. Beautiful motorcycles. Lot’s of customs.
New Drive Nitro walker with chair came in today
Walking sessions
1 lap around stairs (approx 40 steps)
When we got home, I had her walk from car to the beginning of cul-de-sac (approx 150)
-190 steps

5-5 – FR
Met with my parents for brunch. I had her walk in with walker (no wheelchair). First time of walking into a place without using a wheelchair
Walking sessions
First Time – Unassisted. I waited for her to come around the other side – 1 lap around the stairs w/ walker (approx. 40 steps, 8:45AM)
First Time – Walked into a restaurant w/ walker (no wheelchair). Also walked out w/ walker (approx 90 steps)
130 steps + approx another 40 steps

5-4 – TH May the Forth Be With You
Heading to the Rays / Pirates Game!!!

Walking sessions
1 lap around the stairs (approx. 40 steps, 9AM)
After game we got home and Jody walked from Jeep, up 2 stairs an into the chair (approx 40 steps, 4:00)

5-3 WED – Had an oncologist appoint for tomorrow afternoon for LABS and a shot to raise the platelet level.
Had to cancel. I forgot we are going to the Rays game tomorrow afternoon. I changed the appoint yesterday in hopes of doing the visit today. They called up and don’t have approval from the insurance company yet. So most likely even tomorrow’s appoint might have been cancelled as well.

Walking sessions
2 laps around the stairs (approx. 80 steps, 9AM)
Walked to our neighbors house approx 125 steps (nonstop) 3:30
Went from our driveway to the other side of our neighbors driveway with walker and back (approx 81 steps)
5 minute break
Went from our driveway to the other side of our neighbors driveway with walker and back (approx 81 steps)
367 Steps

5-2- TUES
With Jody in a wheel chair, we took a nice walk with Lucy down 102nd ave to the Canal.

Walking sessions
1 lap around the stairs (approx. 40 steps, 8:15AM)
We stopped, I got the walker and Jody walked from the other side of our neighbors driveway to inside the house to the chair (approx 80 steps)
Only 120 steps today. Not the best day for Jody as far as walking goes. We did go out on the back deck, so she had to walk down 3 steps and walk about 20 more steps to get to the deck (then back in the house) and that took it out of her. Hoping for a better day tomorrow.

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5-1-23 MON
Appointment at Dr Kamath’s office for bloodwork (labs). Saw on the results are still very low. Still can’t start the chemo treatment pills (Supposed to be 5 in a week, then 3 weeks off). This was supposed to start last month 4/5. One week got missed because Shore Acres Care Center did the bloodwork, and I guess Florida Cancer Center never read the results.
Also, Jody took some pills to raise the platelet level, I found out they were ‘sample’s. That didn’t do the trick. So sounds like on TH. she will be getting a shot that will raise them.
Need to get her on the chemo pills again!!!
See April’s updates

She’s definitely getting in and out of the car better and easier (a LOT less ‘resisting’) than she was a month ago. I remember one time after a radiation treatment, it took 2 1/4 hours to get her into the car from the wheelchair. 🙁
I wished I would have stopped her going to the radiation treatments toward the end 🙁 I don’t like see her not walking like she did 3/4 into the treatments. She was perfectly normal. this is NOT due to the tumor. This is ALL radiation. I saw her slowly go downhill with 1 to 1 1/2 weeks left of treatments.

Walking sessions
1 lap around the stairs (approx. 40 steps, 8:15AM)
First Time – Walked from the Jeep, up the 2 steps, into the house and into the chair (approx 40 steps). No wheelchair used. She used a walker and I still had to assist her some. This was after we got home from the Oncologist.
#2 Walked from the Jeep, up the 2 steps, into the house and into the chair (approx 40 steps, 12:30PM)
Walked out on the back porch with a walker. (approx. 15 steps). Had to go down 2 steps.
Went out front –
Went from our driveway to the other side of our neighbors driveway with walker and back (approx 81 steps)
5 minute break
Went from our driveway to the other side of our neighbors driveway with walker and back (approx 81 steps)
5 minute break
Went from our driveway to the other side of our neighbors driveway with walker and back (approx 81 steps)
last 10 steps, she did without the walker, but I held her
5 minute break
Went from our driveway to the other side of our neighbors driveway with walker and back (approx 81 steps)
last 20 steps, she did without the walker, but I held her
Then walked from outside, 2 steps, then inside (approx 40 steps)
459 steps (high is 490 on 5/29/23)
Today, I’m hoping we can break 500
-459 steps