A Wookies return.....

Went to the Eye doc today and got some promising news!! My retina has reattached and there is a scar holding everything together. To me it was more like blah, blah, blah, except for when he was looking at todays scans and said “remarkable progress!” He was actually excited, which made me very happy. Now if I could get that kind of enthusiasm from my oncologist I would be golden.
Bad news I have to wait at least another 3 weeks before I ride in the woods again. I may try the rail trail if the Mrs will allow it, but I won’t hold my breath.
 
Frank said:
Went to the Eye doc today and got some promising news!! My retina has reattached and there is a scar holding everything together. To me it was more like blah, blah, blah, except for when he was looking at todays scans and said “remarkable progress!” He was actually excited, which made me very happy. Now if I could get that kind of enthusiasm from my oncologist I would be golden.
Bad news I have to wait at least another 3 weeks before I ride in the woods again. I may try the rail trail if the Mrs will allow it, but I won’t hold my breath.
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I’ve been known to ride rail trails…. Hint hint 😁
 
Frank said:
Went to the Eye doc today and got some promising news!! My retina has reattached and there is a scar holding everything together. To me it was more like blah, blah, blah, except for when he was looking at todays scans and said “remarkable progress!” He was actually excited, which made me very happy. Now if I could get that kind of enthusiasm from my oncologist I would be golden.
Bad news I have to wait at least another 3 weeks before I ride in the woods again. I may try the rail trail if the Mrs will allow it, but I won’t hold my breath.
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I took my time after eye surgery, or I was forced not to ride by my better half would be a more accurate statement…just be safe. Great news anyway, so happy for you!
 
So it’s been a while since I’ve updated this thread….
First the good news, last Wednesday I met with the doctor who did the procedure on my eye. Of course they do all sorts of crap, like pictures of my eye and eye tests. When the doc walked into the room he was all smiles!!! He was reading the charts, shaking his head a little and then looks into my eye. “Do you realize that you were legally blind in your right eye and now you have 20/25 vision….that’s amazing.” Then he went on to say that I can go back to whatever I was doing!!! Good stuff!!! Now I just have a small amount of swelling left and then my vision should return to my previous state of age induced blindness.

Yesterday I went to the lab as it is chemo week and they all asked how my eye doc visit went, they were all happy about the results!! Then they checked my labs and said “perfect!” Things were great right up to this point. They then tried to access my port in my chest and were unable to get return blood flow. So they tried another time, and another, and another. After 6 attempts and 3 different nurses, they called my doc. Within 10 minutes one of the office folk came in with a script for a hospital visit to get a “Port Study” done. As she started to walk away from me she stopped and said “why is it always you?”
So tomorrow I go to radiology and get scanned and hopefully they find the blockage and clear it without surgery……when I left the lab yesterday Rikki was upset and said she was frustrated because my numbers had gone up and I need the chemo.

Like I’ve said before, it’s a fucking roller coaster that I wish I could get off of. But this too shall pass and I’ll have more shit to check off my bucket list….which is looking impressive by the way.
 
Frank said:
Yeah, I was told we need to address my cataracts as well. My reply was “I have stage 4 cancer, that’s not a priority now. “ The doc nodded and shut up.
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My left eye cataract had gotten so bad I basically could not see from that eye, I had to get it taken care of. My right eye is already eligible for surgery but I cannot really tell, it's just like if I had a slight filter on that eye but no blind spot, it can wait. Until it doesn't affect your vision I would say don't even bother.
 
For those who are following along…..
Last Friday I had the Port Study done, which is basically hooking one of their big needles like they use for chemo and try to force the solvent to flow. After 3 attempts the doctor said I would need the port replaced 🤬 but right after he said that I felt a pop and they were able to get flow. They then add an imaging fluid and watch the screen. Doc was happy at that point and drew a
Couple of vials of blood to see if there was anything that would cause another clog. So now I’m good to go but my chest is sore as hell.

On Sunday and Monday I went to Allaire for the first time in a long time and felt the ramifications of laying on my side 24/7 for too long. First day I was so tired I could barely stay awake, awoke the next morning not feeling refreshed but I went back and did another very short loop with mike_243 and felt slightly better than the day before…..that was a bit of a relief. Woke up today feeling good and rested, made me happy.

That was until I remembered I had an appointment with Doctor Amin at 2pm……which was closer to 3:30 but whatever. We discussed my case and he’s perplexed as to why I look so good for someone with my numbers just under 5k. He added my exercise routine might have something to do with it. He also mentioned that there have been cases where numbers did not match scans, which is what happened at my last CT scan. So I left today knowing I have to get a PET scan now but we are continuing my current protocol. He also tried to talk me into revisiting the drug that killed me but it would involve a hospital stay and being worked on by an Immunologist. But that’s in the future, for today I’m happy with the visit and will enjoy this part of the rollercoaster.
 
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Frank said:
For those who are following along…..
Last Friday I had the Port Study done, which is basically hooking one of their big needles like they use for chemo and try to force the solvent to flow. After 3 attempts the doctor said I would need the port replaced 🤬 but right after he said that I felt a pop and they were able to get flow. They then add an imaging fluid and watch the screen. Doc was happy at that point and drew a
Couple of vials of blood to see if there was anything that would cause another clog. So now I’m good to go but my chest is sore as hell.

On Sunday and Monday I went to Allaire for the first time in a long time and felt the ramifications of laying on my side 24/7 for too long. First day I was so tired I could barely stay awake, awoke the next morning not feeling refreshed but I went back and did another very short loop with mike_243 and felt slightly better than the day before…..that was a bit of a relief. Woke up today feeling good and rested, made me happy.

That was until I remembered I had an appointment with Doctor Amin at 2pm……which was closer to 3:30 but whatever. We discussed my case and he’s perplexed as to why I look so good for someone with my numbers just under 5k. He added my exercise routine might have something to do with it. He also mentioned that there have been cases where numbers did not match scans, which is what happened at my last CT scan. So I left today knowing I have to get a PET scan now but we are continuing my current protocol. He also tried to talk me into revisiting the drug that killed me but it would involve a hospital stay and being worked on by an Immunologist. But that’s in the future, for today I’m happy with the visit and will enjoy this part of the rollercoaster.
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That's great news, Frank. Anecdotally, your exercise regimen confirms what I've seen to be true regarding exercise and improved prognosis. I read studies about this years ago, which basically confirms this scientifically. I think so many more patients would improve faster if they were to overcome the mental and physical pain and fatigue and just get out and exercise more. I remember how difficult it was just to walk up a half flight of stairs, panting for oxygen and feeling the fatigue in my thighs. Not many people, especially at your age, can get a MTB ride between treatments. That's truly inspiring.

Keep on truckin'!
 
Frank said:
For those who are following along…..
Last Friday I had the Port Study done, which is basically hooking one of their big needles like they use for chemo and try to force the solvent to flow. After 3 attempts the doctor said I would need the port replaced 🤬 but right after he said that I felt a pop and they were able to get flow. They then add an imaging fluid and watch the screen. Doc was happy at that point and drew a
Couple of vials of blood to see if there was anything that would cause another clog. So now I’m good to go but my chest is sore as hell.

On Sunday and Monday I went to Allaire for the first time in a long time and felt the ramifications of laying on my side 24/7 for too long. First day I was so tired I could barely stay awake, awoke the next morning not feeling refreshed but I went back and did another very short loop with mike_243 and felt slightly better than the day before…..that was a bit of a relief. Woke up today feeling good and rested, made me happy.

That was until I remembered I had an appointment with Doctor Amin at 2pm……which was closer to 3:30 but whatever. We discussed my case and he’s perplexed as to why I look so good for someone with my numbers just under 5k. He added my exercise routine might have something to do with it. He also mentioned that there have been cases where numbers did not match scans, which is what happened at my last CT scan. So I left today knowing I have to get a PET scan now but we are continuing my current protocol. He also tried to talk me into revisiting the drug that killed me but it would involve a hospital stay and being worked on by an Immunologist. But that’s in the future, for today I’m happy with the visit and will enjoy this part of the rollercoaster.
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1speeder said:
That's great news, Frank. Anecdotally, your exercise regimen confirms what I've seen to be true regarding exercise and improved prognosis. I read studies about this years ago, which basically confirms this scientifically. I think so many more patients would improve faster if they were to overcome the mental and physical pain and fatigue and just get out and exercise more. I remember how difficult it was just to walk up a half flight of stairs, panting for oxygen and feeling the fatigue in my thighs. Not many people, especially at your age, can get a MTB ride between treatments. That's truly inspiring.

Keep on truckin'!
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I don't have anything scientific to add to that, just that maybe more than specifically the exercise regimen it maybe the mental attitude and the generally good feeling of doing something you're passionate about that may be at work here. My wife is in England with her sisters at the moment and she seems to be doing good and not having the usual pain and ache she's usually experiencing, and I can confirm she's not doing any sort of exercise other than window shopping with her sisters and nieces, just doing the things she loved to do when she lived there. What I'm saying @Frank is keep doing you whatever you is as it seems to work!
 
Wow, it’s been a while since I last posted stuff. I’ve had a rough month, food poisoning, and being weak from that the chemo hits hard.

Anyway, today is my re-birthday!!!! 3 years ago today I was at the lab and they hooked me up to that nasty drug and within 30 seconds I died. Luckily I had the best people around me and I had a trace pulse again after 5 or so minutes. So when the EMTs arrived I was barely clinging to life. It’s taken me 3 years to find out how long I was gone, I guess denial had a lot to do with it. But I get tidbits of info here and there. I also found out how much of a scar it left on Rikki and Kevin, I don’t think they had anyone code like that. As a matter of fact Rikki called today my Code-a-versay, which I laughed at.

So I guess you can understand how important it was for me to go to the lab today and thank those 2 repeatedly. There was lots of hugs and “I love you”s and I got a nice selfie with Rikki, Kevin was busy so all I got to do was tackle him while he was at his computer. It was a fine visit and I’m glad to be 3 today.

IMG_1860.jpeg
 
Frank said:
Wow, it’s been a while since I last posted stuff. I’ve had a rough month, food poisoning, and being weak from that the chemo hits hard.

Anyway, today is my re-birthday!!!! 3 years ago today I was at the lab and they hooked me up to that nasty drug and within 30 seconds I died. Luckily I had the best people around me and I had a trace pulse again after 5 or so minutes. So when the EMTs arrived I was barely clinging to life. It’s taken me 3 years to find out how long I was gone, I guess denial had a lot to do with it. But I get tidbits of info here and there. I also found out how much of a scar it left on Rikki and Kevin, I don’t think they had anyone code like that. As a matter of fact Rikki called today my Code-a-versay, which I laughed at.

So I guess you can understand how important it was for me to go to the lab today and thank those 2 repeatedly. There was lots of hugs and “I love you”s and I got a nice selfie with Rikki, Kevin was busy so all I got to do was tackle him while he was at his computer. It was a fine visit and I’m glad to be 3 today.

View attachment 223738
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You look very mature for your age...
 
Frank said:
Wow, it’s been a while since I last posted stuff. I’ve had a rough month, food poisoning, and being weak from that the chemo hits hard.

Anyway, today is my re-birthday!!!! 3 years ago today I was at the lab and they hooked me up to that nasty drug and within 30 seconds I died. Luckily I had the best people around me and I had a trace pulse again after 5 or so minutes. So when the EMTs arrived I was barely clinging to life. It’s taken me 3 years to find out how long I was gone, I guess denial had a lot to do with it. But I get tidbits of info here and there. I also found out how much of a scar it left on Rikki and Kevin, I don’t think they had anyone code like that. As a matter of fact Rikki called today my Code-a-versay, which I laughed at.

So I guess you can understand how important it was for me to go to the lab today and thank those 2 repeatedly. There was lots of hugs and “I love you”s and I got a nice selfie with Rikki, Kevin was busy so all I got to do was tackle him while he was at his computer. It was a fine visit and I’m glad to be 3 today.

View attachment 223738
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This is quite amazing to think about and congrats on your rebirth day. ! #fuckcancer
 
Frank said:
Wow, it’s been a while since I last posted stuff. I’ve had a rough month, food poisoning, and being weak from that the chemo hits hard.

Anyway, today is my re-birthday!!!! 3 years ago today I was at the lab and they hooked me up to that nasty drug and within 30 seconds I died. Luckily I had the best people around me and I had a trace pulse again after 5 or so minutes. So when the EMTs arrived I was barely clinging to life. It’s taken me 3 years to find out how long I was gone, I guess denial had a lot to do with it. But I get tidbits of info here and there. I also found out how much of a scar it left on Rikki and Kevin, I don’t think they had anyone code like that. As a matter of fact Rikki called today my Code-a-versay, which I laughed at.

So I guess you can understand how important it was for me to go to the lab today and thank those 2 repeatedly. There was lots of hugs and “I love you”s and I got a nice selfie with Rikki, Kevin was busy so all I got to do was tackle him while he was at his computer. It was a fine visit and I’m glad to be 3 today.

View attachment 223738
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Well we are all thankful that Miracle Max was nearby
1695731347250.png
 
So I did some hood loops, 2 to be exact, but great for day 6 of a chemo week!!!
https://strava.app.link/KFlc3EJK8Db
1698094325726.png


So my numbers have been rising which does not make me happy. Will find out more after I get the results of a CT scan scheduled for Wednesday!
I need you all to say an extra prayer for me please, I’m not done yet…..I still have stuff to do.
But regardless, I will be trying to build up so I can make it through the Big C ride coming up! I’m looking forward to a day of sharing and Wookiee hugs!!!!
 
Yesterday was a tough one. I had a 9:30 am CT scan scheduled and as you can imagine how nervous I am about the results. Well the nurse tried to attach an IV needle in my right arm to inject the contrast liquid. Well try #1 failed, as did #2….so my right arm had 2 holes. Now mind you, they wiggled around with the needles trying to find the vein and that’s painful. Then the nurse apologized and asked another nurse to give it a go. Nurse #2 decided to move to the left arm and made 2 separate attempts at finding a vein at the elbow joint. Now anyone who has seen me lately knows how skinny and veiny my arms have gotten, so I was really surprised at the issue. So after 2 failed attempts by Nurse 2 on my left arm, she decides to move further up my forearm toward my wrist……no bueno. So in comes nurse #3 and made an attempt at my left forearm and was confident she struck a vein. So the scan begins and my arms had to be back over my head and I guess their aim was off because when I entered the machine the edge of it forced my arm past my comfort zone. But I didn’t complain about it because I wanted to be done…..wrong! When I went in for the pass where they pumped the contrast solution in, I was already feeling that dislocated shoulder feeling that I didn’t notice the pain in my arm. As I exited the machine I was in a lot of pain and noticed a softball sized lump in my arm….the contrast solution did not go into the vein. Sadly not enough contrast went in so we had to start all over again. So Nurse 3 moves over to my right arm and puts the needle in and it was good and I hardly felt it. So scan number 2 worked and then the attention to my left arm was made.

As I left the lab, I walked through the waiting room and realized I created a bit of a traffic jam. I also think I frightened a few as my arms were covered in a bunch of bandages. I drove home and stopped on the way for a meltdown. When I got home my wife wanted pictures as she was shocked at how badly it went. Below is a pic from yesterday.
IMG_1913.jpeg


So a word of advice…..if you are CT scan, drink a shit ton of water the day before as well as after.

Oi vey….fml sometimes.
 
Frank said:
Yesterday was a tough one. I had a 9:30 am CT scan scheduled and as you can imagine how nervous I am about the results. Well the nurse tried to attach an IV needle in my right arm to inject the contrast liquid. Well try #1 failed, as did #2….so my right arm had 2 holes. Now mind you, they wiggled around with the needles trying to find the vein and that’s painful. Then the nurse apologized and asked another nurse to give it a go. Nurse #2 decided to move to the left arm and made 2 separate attempts at finding a vein at the elbow joint. Now anyone who has seen me lately knows how skinny and veiny my arms have gotten, so I was really surprised at the issue. So after 2 failed attempts by Nurse 2 on my left arm, she decides to move further up my forearm toward my wrist……no bueno. So in comes nurse #3 and made an attempt at my left forearm and was confident she struck a vein. So the scan begins and my arms had to be back over my head and I guess their aim was off because when I entered the machine the edge of it forced my arm past my comfort zone. But I didn’t complain about it because I wanted to be done…..wrong! When I went in for the pass where they pumped the contrast solution in, I was already feeling that dislocated shoulder feeling that I didn’t notice the pain in my arm. As I exited the machine I was in a lot of pain and noticed a softball sized lump in my arm….the contrast solution did not go into the vein. Sadly not enough contrast went in so we had to start all over again. So Nurse 3 moves over to my right arm and puts the needle in and it was good and I hardly felt it. So scan number 2 worked and then the attention to my left arm was made.

As I left the lab, I walked through the waiting room and realized I created a bit of a traffic jam. I also think I frightened a few as my arms were covered in a bunch of bandages. I drove home and stopped on the way for a meltdown. When I got home my wife wanted pictures as she was shocked at how badly it went. Below is a pic from yesterday. View attachment 225922

So a word of advice…..if you are CT scan, drink a shit ton of water the day before as well as after.

Oi vey….fml sometimes.
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Rest those arms you got alot of hugs to give out in a couple of weeks!
 
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