Focus on sleep
8/1
Here is the last time I am posting the Blog link. Any of the ones you have will still take you there. This is the short version and takes you to the top.
https://johnscancertrip.blogspot.com/
If an old link takes you to a specific entry and you want the latest, click the arrow to the left of "John's Cancer Trip"
____
Here is the last time I am posting the Blog link. Any of the ones you have will still take you there. This is the short version and takes you to the top.
https://johnscancertrip.blogspot.com/
If an old link takes you to a specific entry and you want the latest, click the arrow to the left of "John's Cancer Trip"
____
Been a busy day.
I realized I had short term memory loss - was by myself and thought it was Alzheimers. I was very scared for 10 minutes. My mom died of Alzheimers at 62. Someone told me later that it was chemo fog..
Called Sunlife to find where my disablity check was in its travels, got FedEx tracking no at least, Found it could anytime till 8.
Called Sun life and asked about benefits after i leave the company, took half hour and wrote down stuff buy had to ask each thin...g 3 times and had trouble knowing which benefit she was talking about.
I realized I had short term memory loss - was by myself and thought it was Alzheimers. I was very scared for 10 minutes. My mom died of Alzheimers at 62. Someone told me later that it was chemo fog..
Called Sunlife to find where my disablity check was in its travels, got FedEx tracking no at least, Found it could anytime till 8.
Called Sun life and asked about benefits after i leave the company, took half hour and wrote down stuff buy had to ask each thin...g 3 times and had trouble knowing which benefit she was talking about.
Spent 2 hours with Home Health Aide answering questions
Wrote email to summarize the benefits notes and figure out which parts to include
Broke phone cord, found another, decided how to get one for free , but found another later.
Set up neighbor to pick up after our 3 dogs
Chatted with neighbor about other stuff he can do.
Neighbor Will spray weeds
Wants to spray our fake plastic grass with vinegar to get ridbof dog urine smell
Found Miracle Gro spray head to use for grass
Fixed leak in garden hose with DUCT tape. (Its not duck tape people).
finally found 2 places to sit comfortably by experimenting with step ladder and two cushions - took nap and woke up with no pain - unusual as no bnb other position has worked
Take bolt off backyard gate and replaced
Forgot how to make coffee, but eventually did
Cooked steak after several repeats and rewrites of 3 line recipe.
Forgot steak on BBq 2x by extra 50% of time
Skipped last step and brought steak in and was only 10 degees over done, but came out perfect. IMd my neice so i wouldnt forget how to make it or my french press coffee.
Lose cane every time i used it. Once it was next to me and I went back to where I was to get it
Rode stationary bike for 9 minutes with right leg wrapped like a mummy! Preppin for 9 mo from now.
That is also because my sleep patterns are still messed up. I have only slept 2 hours and rode bike, tried to hold painful yoga positions that would aid lymphedema drainage, did laundry, straighten up room, answered FB responses, checked work emails and sent notices to folks about me leaving, worked to do checklists, added/removed stuff to individual lists to ask docs based on changing conditions, prioritized who to call, drove myself crazy looking for the interface to the car error code output. Obviously someone moved it. Threw out old clothes, threw out some stuff in garage, checked what loads were staged in the closet for the home protection shotgun, found another shoulder bag for birdshot, ate breakfast, made both drip coffee, and for me french press, fed dogs, tried to sleep another hour, worked up way too much stress and that was before making lunch and getting ready to leave for dr appt at 2.
I finally put on a cpap machine I barely used in the last month because the face mask was awful and I had to make appt to get a nasal canula. After putting that on the night before last I got eight straight hours for the first time in 9 months.
8/2
Wrote email to summarize the benefits notes and figure out which parts to include
Broke phone cord, found another, decided how to get one for free , but found another later.
Set up neighbor to pick up after our 3 dogs
Chatted with neighbor about other stuff he can do.
Neighbor Will spray weeds
Wants to spray our fake plastic grass with vinegar to get ridbof dog urine smell
Found Miracle Gro spray head to use for grass
Fixed leak in garden hose with DUCT tape. (Its not duck tape people).
finally found 2 places to sit comfortably by experimenting with step ladder and two cushions - took nap and woke up with no pain - unusual as no bnb other position has worked
Take bolt off backyard gate and replaced
Forgot how to make coffee, but eventually did
Cooked steak after several repeats and rewrites of 3 line recipe.
Forgot steak on BBq 2x by extra 50% of time
Skipped last step and brought steak in and was only 10 degees over done, but came out perfect. IMd my neice so i wouldnt forget how to make it or my french press coffee.
Lose cane every time i used it. Once it was next to me and I went back to where I was to get it
Rode stationary bike for 9 minutes with right leg wrapped like a mummy! Preppin for 9 mo from now.
That is also because my sleep patterns are still messed up. I have only slept 2 hours and rode bike, tried to hold painful yoga positions that would aid lymphedema drainage, did laundry, straighten up room, answered FB responses, checked work emails and sent notices to folks about me leaving, worked to do checklists, added/removed stuff to individual lists to ask docs based on changing conditions, prioritized who to call, drove myself crazy looking for the interface to the car error code output. Obviously someone moved it. Threw out old clothes, threw out some stuff in garage, checked what loads were staged in the closet for the home protection shotgun, found another shoulder bag for birdshot, ate breakfast, made both drip coffee, and for me french press, fed dogs, tried to sleep another hour, worked up way too much stress and that was before making lunch and getting ready to leave for dr appt at 2.
I finally put on a cpap machine I barely used in the last month because the face mask was awful and I had to make appt to get a nasal canula. After putting that on the night before last I got eight straight hours for the first time in 9 months.
8/2
Dang today was supposed to be relaxing. They only took 3 vials of blood for testing, but while sitting in the exam roon waiting for the PA, I started to fade. Got up and got Kayleigh, Dr Vs nurse/admin and she took vitals and got some bottles of OJ. It was 11 and since I ate breakfast at 6, Id eaten half a sandwich, which wasnt too big on carbs, my red blood cell count was low, anss Id only gotten 4 hours of interrupted sleep. The OJ roused me and when Kris, the PA came in, ...I was alert enough to ask questions and get the answers. Next chemo infusion takes 3.5 hours, so I made some calls to schdule things for next week, like getting measured for velcroed wraps which come on and go off easily. Fell asleep for an hour, so needed. The woman next to me had a terminal condition where her body destroys her muscle. We talked about how I wanted to go back to Ohio for a bike ride through a land f Indian mounds along the Scioto, that was helped tamed by a hero of mine, a frontiersman named Simon Kenton and a contemporary of her favorite Daniel Boone. I told her how Simon saved Boone who had a broken leg on the field of battle and carried him into the fort and how Simon survived and escaped three gauntlets when captured by the Shawnee.
https://www.google.com/url…
https://www.google.com/url…
Went down to work and pulled off the resignation letter and farewell email I wrote 2 years ago when I was ready to hang up my spurs. Grabbed an old department phone list as there are a bunch of folks who left. Shot the bull with some of my besties and not-so besties. They were pretty surprised at the 45 lbs I lost since Oct. Left and stopped at the Lymphedema Therapy to schedule appts for next week and beyond. Beyond was out of the question it turns out as they only do one week at a time. Slogged home through the I-15 Spaghetti Bowl construction using speech to text to update those that needed information about the day.
8/3
8/3
Didnt get on the bike yesterday, but as usual only slept 2 hours so far tonight. Got busy and thru out some junk in the spare room where the recumbant bike is. Moved a spare office chair into the office. Rearranged stuff to give more floor room. Put down the yoga mat to try different positions to elevate my thighs above my torso to allow lymph to drain from the leg. Most were pretty painful. Found one I could tolerate for a few minutes, until I tried to relax into it. Not hap...pening. Found a convoluted way to get off the floor, which I doubt I could repeat twice. Heck, I can't find the seating position I had the first time I used the cushions.
Got on the bike and put YouTube to the Global Cycling Network Tech Show. They are usually a half hour or so and quite a number of varied cycling topics. Started cycling, but things were off, moved the seat up and got a better fit,but it squeaked and rocked. Looks like I need to take an allen key to it. Watched and rode for 20+ mins to make up for yday and to squeeze the lymph out.
Will wait and take off wraps later, take a shower, lotion the leg and rewrap. Have laundry in to, so have to put that away. Have some clothes to chuck too. Not worth donating when I get done with them.
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Picked up another 2 hrs of sleep and feel great. I cannot fathom how exercise can resolve a pain caused by a tumor leaning on a nerve, but it sure beats morphine or a nerve block. Back is stiff, but sleeping sitting up will do that.
_______
Will wait and take off wraps later, take a shower, lotion the leg and rewrap. Have laundry in to, so have to put that away. Have some clothes to chuck too. Not worth donating when I get done with them.
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Picked up another 2 hrs of sleep and feel great. I cannot fathom how exercise can resolve a pain caused by a tumor leaning on a nerve, but it sure beats morphine or a nerve block. Back is stiff, but sleeping sitting up will do that.
_______
My trusty steed of 44 years. Atala Gran Prix. They dont make frames with chromed lugs anymore. Too bad, so classy looking.
The bike shop's idea of sizing was asking, "what size frame you want." Feeling smug at almost 6' , I said, "the biggest you have." Felt ok all these years, but like I had to reach for every thing. Turns out the frame is too big. My son is 6'4". Once I get it cleaned up, Ill get him some cycling shoes with SPD cleats. That way he can ride platform pedals ...as well as clipless SPD pedals. When he is walking on the side walk he wont sound like a team of horses.
The bike shop's idea of sizing was asking, "what size frame you want." Feeling smug at almost 6' , I said, "the biggest you have." Felt ok all these years, but like I had to reach for every thing. Turns out the frame is too big. My son is 6'4". Once I get it cleaned up, Ill get him some cycling shoes with SPD cleats. That way he can ride platform pedals ...as well as clipless SPD pedals. When he is walking on the side walk he wont sound like a team of horses.
Only original components are the Campagnolo brakes. Replaced the loose cottered cranks with the best Dura Ace I could afford. Big ring has a massive 54 teeth. Jump on that on a down hill driving an eleven tooth cog and you almost leave skid marks.
Now to pack back on muscle.
I finally weigh the same as when I got to Wynn and biked 26 miles a day commuting.
In college I rode 40 miled a day to work, home for dinner and up to school and back.
Once, here, I pulled into the SNVRTD bike shop at the bus depot to pick up tubes. John the mechanic looks at me and says," The only people out today are crazy or homeless." It was 26°
Hottest was 114 from NLV to Eastern and Sunset. Drank more Gatorade than it would have cost on gas at $4 per gal.
Rode from LI to Philly to visit a cousin -(it would take too long to list the misadventures on that ride): and on an organized ride called TOSRV from Columbus OH to Portsmouth and back in 2 days -210 mi.
Dont mind rain and nighttime snow when u are first to make tracks is magical. Ridden up Pecos to north of the 215 on Jun Bug Mine Rd to a cave up there. More pushing than riding going up and it took 5 hrs to climb the 2000'. Wanted to continue to Gass peak rd, but was still in cell range
😡
And family wanted me back. Turned around and flew back in 20 mins on my beater gravel bike. Havent ridden since Oct and had to lay the bike down and step over it and pull it up as i couldn't raise my leg. Lateral movements of the leg are impossible. I use the hooked end of a cane to snag my foot to drag the leg into cars.
Broke my collarbone once. Hit the pedal on the ground in a corner, Front wheel bent and caught on the brake and I went over the bars. Carried my steed home on my shoulder, swapped the wheel and took off. Tyler Hamilton has nothing on me.
Now to pack back on muscle.
I finally weigh the same as when I got to Wynn and biked 26 miles a day commuting.
In college I rode 40 miled a day to work, home for dinner and up to school and back.
Once, here, I pulled into the SNVRTD bike shop at the bus depot to pick up tubes. John the mechanic looks at me and says," The only people out today are crazy or homeless." It was 26°
Hottest was 114 from NLV to Eastern and Sunset. Drank more Gatorade than it would have cost on gas at $4 per gal.
Rode from LI to Philly to visit a cousin -(it would take too long to list the misadventures on that ride): and on an organized ride called TOSRV from Columbus OH to Portsmouth and back in 2 days -210 mi.
Dont mind rain and nighttime snow when u are first to make tracks is magical. Ridden up Pecos to north of the 215 on Jun Bug Mine Rd to a cave up there. More pushing than riding going up and it took 5 hrs to climb the 2000'. Wanted to continue to Gass peak rd, but was still in cell range
😡And family wanted me back. Turned around and flew back in 20 mins on my beater gravel bike. Havent ridden since Oct and had to lay the bike down and step over it and pull it up as i couldn't raise my leg. Lateral movements of the leg are impossible. I use the hooked end of a cane to snag my foot to drag the leg into cars.
Broke my collarbone once. Hit the pedal on the ground in a corner, Front wheel bent and caught on the brake and I went over the bars. Carried my steed home on my shoulder, swapped the wheel and took off. Tyler Hamilton has nothing on me.
_______
Mohammed Ziauddin
Please do not feel sad at all, this is just another adventure of life. Cancer and treatment can be painful at times, but if cycling up a 12% grade for miles has taught me, pain has an end; see the end and aim through it.
I have learned so much, especially who I can count on. God did come to me to show me the 9 month path to a cure. The in between part is just a medical and engineering challenge and a way to break from the norm.
...
Please do not feel sad at all, this is just another adventure of life. Cancer and treatment can be painful at times, but if cycling up a 12% grade for miles has taught me, pain has an end; see the end and aim through it.
I have learned so much, especially who I can count on. God did come to me to show me the 9 month path to a cure. The in between part is just a medical and engineering challenge and a way to break from the norm.
...
The tools are all around me and I just need to pick the right ones. I am surrounded by very smart people including our children who are helping navigate those choices correctly. I also have a cousin who has been down my path and is being forced to follow it again, so I have company on this journey and together we are a force multiplier against which cancer doesn't stand a chance.
Hospital and airport personnel have never seen some use the wrong end of a cane the way I do. See below, I took off the useless strap. I hook this part around my right foot and pull it into cars, wheelchairs, on and off beds, and to pull objects closer, flip on light switches, like a 4 foot prosthetic arm.
That is what we engineers like you and I do. See a problem, see what we have at hand, and use it unconventionally too our advantage. I imagine on shipboard this was a daily occurrence for you. My uncle was also a chief engineer for the Grace Lines and to save space, they would sandpaper spark plugs to reuse them.
When hospital tell me how they use vinyl straps to handle the same situation, I show them the benefits of my technique; and how I tried their way first and found there to be a dangerous lack of control that could further exacerbate my injury or be useless in the dark of night when time was critical. Not as a criticism, but to help improve others lives and have fun in the process.
____________
8/4
For our reunion with the Bayers today, I had put together a document with pictures and my experiences with the older cousins. This way my family would know who was who on the screen.
My wife said what about us and how will this go? So last night I documented our side so the Bayers would be able to ask us questions.
Just like any conversation, start with what you know about a person, then ask a question about it. Just keep asking questions until they ask one back. The conversation may never end so everyone wait their turn.
_____
From my cousin Marianne:
A special thank you to John Heeg, our Honorary cousin, who could not be with us physically today, but through the marvels of modern technology, was able to participate via Skype. So nice meeting your family, talking with all of fond memories of years past. A heartfelt thanks for the wonderful “Memory Book” you compiled of the family members from the past and the present. Your hard work, and ability to recall events from so long ago amazes me. The fact that you did all this while being so ill boggles my mind. Brian, John, Bob and I loved reading all that you wrote. Brian put his copy in the car immediately so he wouldn’t forget it. I know he was touched by what you revealed about his Dad. Hope you enjoyed the visit today also. Again, THANK YOU!!
_________________
I haven't seen these members of the family since my sister's wake, and it really wasn't the time to catch up. This reunion was the time to close the gaps in our knowledge of the family, like the timelines of when people started with FDNY, how my parents met, where they lived relative to each other. how Brian made it from the South Tower to the hospital on 9/11 and get word to his family, why my uncle Vin was forced to retire from FDNY, what happened to the 4th of July bonfires on the beaches of LI and CT, etc.
_______________________
Without Marianne 's and my cousin Tom Zito's help, the mystery of my mothers first marriage to Bill Bayer and later to my father after the war might never been solved. I have told my cousin, Battalion Chief Brian O'Flaherty's story up and down Cali and NV and have read his FDNY interview so many times I almost have it memorized.
Brian was able to fill the gap after he got to triage and informed everyone of his well being. It was probably 3 pm PST on 9/11 when I had the back bone to call Aunt Marge, knowing Brian would not have stayed away and relieved she had heard from him.
__________
When Brian was Captain at the fledgling Rescue 1 across from the WTC, at the same time Chief Ray Downey was Captain and founder of Rescue 2 in Brooklyn, they each only had 3 firefighters assigned and it was a struggle for acceptance. These were the first Rescue squads in any FD. They jointly developed many of the modern extrication techniques in use today. You won't see Brian's name stamped on any of them, as Ray was the one who wrote the books, lectured and trained other FDs across the country and got all the notoriety.
_______________
8/4
After 9/11 Brian accepted an award from both sides of the border at Vancouver commemorating 9/11. I missed a lot of what he said about that and Canada, but it sounded like his treatment on CA was presidential level.
____________
8/5
Lasted 10 mins on bike today.
________________
My daughter went to Ross in Domenica. I spent a very enjoyable week helping her move in, wandering the streets of the old Fench port and the Fort Young hotel, still with pirate era cannon, stone walls and our room that was part of the original fort. Met fish and fruit mongers, beggars, firemen and shop keepers, and went to the island's independence celebration at the prime minister's grounds, plus whale watching on in a catamaran. Had I been prepared, I would have hiked to the Boiling Lake.
It is the only island that looks the same on its east coast as the way Columbus would have seen it. Such a shame to see Ross pull out and damage what little is left of their economy after H. Maria. Be interesting to see if Ross will firesale the campus to another Univ. https://antiguanewsroom.com/regional/ross-university-dominicas-largest-private-sector-investment-leaves-the-island-after-40-years/
___________
8/6
And they wonder why Vincenzo Nibali is pissed about the lack of rider protections on Alpe d'Huez in the Tour de France. Those smoke bombs have to be banned.
https://youtu.be/ogryZJbKiZc
____________
Best night's sleep so far. 7 hrs. Moved sick bay into the office and slept in desk chair. Good back support, so not feeling crippled this morning.
____________
For niece Suzanne Weiner, contemplating a trip to Oslo in November
See my posting on Domenica. Just wander through town striking up conversations and stay away from tourist traps
Most memorable experience my Dad had when he went to China on the first tour after Nixon negotiated opening tourism with China was wandering the streets before the tours started. He met a man who spoke perfect English, but had not been allowed to since Mao's takover. I do that every where. Lausanne was especially beautiful. Then you find hidden gems that aren't in the tour books. The big attractions are so well documented, you can take video tours and see pictures that are more clear than seeing them in person
Hospital and airport personnel have never seen some use the wrong end of a cane the way I do. See below, I took off the useless strap. I hook this part around my right foot and pull it into cars, wheelchairs, on and off beds, and to pull objects closer, flip on light switches, like a 4 foot prosthetic arm.
That is what we engineers like you and I do. See a problem, see what we have at hand, and use it unconventionally too our advantage. I imagine on shipboard this was a daily occurrence for you. My uncle was also a chief engineer for the Grace Lines and to save space, they would sandpaper spark plugs to reuse them.
When hospital tell me how they use vinyl straps to handle the same situation, I show them the benefits of my technique; and how I tried their way first and found there to be a dangerous lack of control that could further exacerbate my injury or be useless in the dark of night when time was critical. Not as a criticism, but to help improve others lives and have fun in the process.
____________
8/4
For our reunion with the Bayers today, I had put together a document with pictures and my experiences with the older cousins. This way my family would know who was who on the screen.
My wife said what about us and how will this go? So last night I documented our side so the Bayers would be able to ask us questions.
Just like any conversation, start with what you know about a person, then ask a question about it. Just keep asking questions until they ask one back. The conversation may never end so everyone wait their turn.
_____
From my cousin Marianne:
A special thank you to John Heeg, our Honorary cousin, who could not be with us physically today, but through the marvels of modern technology, was able to participate via Skype. So nice meeting your family, talking with all of fond memories of years past. A heartfelt thanks for the wonderful “Memory Book” you compiled of the family members from the past and the present. Your hard work, and ability to recall events from so long ago amazes me. The fact that you did all this while being so ill boggles my mind. Brian, John, Bob and I loved reading all that you wrote. Brian put his copy in the car immediately so he wouldn’t forget it. I know he was touched by what you revealed about his Dad. Hope you enjoyed the visit today also. Again, THANK YOU!!
_________________
I haven't seen these members of the family since my sister's wake, and it really wasn't the time to catch up. This reunion was the time to close the gaps in our knowledge of the family, like the timelines of when people started with FDNY, how my parents met, where they lived relative to each other. how Brian made it from the South Tower to the hospital on 9/11 and get word to his family, why my uncle Vin was forced to retire from FDNY, what happened to the 4th of July bonfires on the beaches of LI and CT, etc.
_______________________
Without Marianne 's and my cousin Tom Zito's help, the mystery of my mothers first marriage to Bill Bayer and later to my father after the war might never been solved. I have told my cousin, Battalion Chief Brian O'Flaherty's story up and down Cali and NV and have read his FDNY interview so many times I almost have it memorized.
Brian was able to fill the gap after he got to triage and informed everyone of his well being. It was probably 3 pm PST on 9/11 when I had the back bone to call Aunt Marge, knowing Brian would not have stayed away and relieved she had heard from him.
__________
When Brian was Captain at the fledgling Rescue 1 across from the WTC, at the same time Chief Ray Downey was Captain and founder of Rescue 2 in Brooklyn, they each only had 3 firefighters assigned and it was a struggle for acceptance. These were the first Rescue squads in any FD. They jointly developed many of the modern extrication techniques in use today. You won't see Brian's name stamped on any of them, as Ray was the one who wrote the books, lectured and trained other FDs across the country and got all the notoriety.
_______________
8/4
After 9/11 Brian accepted an award from both sides of the border at Vancouver commemorating 9/11. I missed a lot of what he said about that and Canada, but it sounded like his treatment on CA was presidential level.
____________
8/5
Lasted 10 mins on bike today.
________________
My daughter went to Ross in Domenica. I spent a very enjoyable week helping her move in, wandering the streets of the old Fench port and the Fort Young hotel, still with pirate era cannon, stone walls and our room that was part of the original fort. Met fish and fruit mongers, beggars, firemen and shop keepers, and went to the island's independence celebration at the prime minister's grounds, plus whale watching on in a catamaran. Had I been prepared, I would have hiked to the Boiling Lake.
It is the only island that looks the same on its east coast as the way Columbus would have seen it. Such a shame to see Ross pull out and damage what little is left of their economy after H. Maria. Be interesting to see if Ross will firesale the campus to another Univ. https://antiguanewsroom.com/regional/ross-university-dominicas-largest-private-sector-investment-leaves-the-island-after-40-years/
___________
8/6
And they wonder why Vincenzo Nibali is pissed about the lack of rider protections on Alpe d'Huez in the Tour de France. Those smoke bombs have to be banned.
https://youtu.be/ogryZJbKiZc
____________
Best night's sleep so far. 7 hrs. Moved sick bay into the office and slept in desk chair. Good back support, so not feeling crippled this morning.
____________
For niece Suzanne Weiner, contemplating a trip to Oslo in November
See my posting on Domenica. Just wander through town striking up conversations and stay away from tourist traps
Most memorable experience my Dad had when he went to China on the first tour after Nixon negotiated opening tourism with China was wandering the streets before the tours started. He met a man who spoke perfect English, but had not been allowed to since Mao's takover. I do that every where. Lausanne was especially beautiful. Then you find hidden gems that aren't in the tour books. The big attractions are so well documented, you can take video tours and see pictures that are more clear than seeing them in person
