A Wookies return.....
- Thread starter Frank
- Start date
Frank
Wookie
So it’s been interesting lately. I was trying real hard to participate in the 31/31 challenge, it’s fun, hard, a pain in the ass, and awesome all wrapped up in one. I love folks posting and some commenting and keeping the vibe going. But then the rug got pulled out from under me again.
As much as I wanted my mom and mom-in-law to pass to ease their pain and suffering, but I loved them both and now am feeling the loss. My wife, whose mom was her best friend is feeling it the worst. The ride was helping me, a healthy distraction. One of the other patients noticed how riding has helped me so much that he asked where he could get one. Not knowing how much bikes are he put out a budget of $400 and I thought of a Walmart tank. Well I have him my Frankenbike which was my TM hard tail I used to pull the BOB trailer. Seeing that I don’t need it anymore I told him he could use it, that was almost 2 weeks ago when we discussed it. Well I got to the lab wart today and had the bike positioned in the lab for him…..he’s jazzed!! So that’s one of the good things.
The bad thing, which has somewhat sidelined me a little bit is a week ago Saturday my house either got hit or a close hit by lightning. My wife was in the “computer room” working on something on her newly repaired pc ( I replaced the power supply the day before) stopped working. I checked and yep, everything in the room was off. I went into the basement and saw a breaker tripped, so I reset it….sweet, easy fix. Well not so easy, it still wouldn’t power up, I checked the outlet and nothing. Long story short and by switching to active outlets, the computer fried, so did a TV, 2 Blu-Ray players, our landline phone, printers are still up in the air but power up, and outside lights. I am currently in the process of trying to think through this issue without an electrician. I know some stuff and am not in a great financial position and have plenty of time on my hands. The breaker is currently off as I work through this so don’t expect a “I burned my house down post”.
So let’s swing back to the PC which was the really big issue for my wife who had been working on a book of sorts. The book is a work in progress of my journey and she’s been working on it for the last 3 years. She’s brilliant and has had numerous conversations with my oncologist about supplements, vitamins, essential oils and such. She was hoping to figure out how to publish on line and was going to work on that soon, not that the book is done, but she has enough to get a start on line. Unlike me, she’s good with words and I’m sure that her tips would help others with cancer and even those who care for them. Well she panicked when the power supply failed and when the new one came in and I fixed it, she was happy. Well less than 24 hrs later the storm comes and poof!! Well I’m lucky to be good friends with a tech guy and he hooked me up with another pc and he told me we would take the HDD out of the old one and add to the new one. Well I opened up the old one again and took out the HDD for him to save a step or so……nothing, zilch, zip. My stomach sank, but what I didn’t know is that the was a SSD on the motherboard and it had the data. @mike_243 was able to retrieve the data and my wife’s book is safe….and I have 2 backups now. Thanks a million Mike, you rule.
You never know what life will throw at you. The father of the guy Jake, who I gave the bike to, lost his wife…Jake’s mom….a few years ago. He and I have been in communication with each other because he’s scared shit for his son. I can’t imagine what he’s going through. Jake’s been a bit bummed because his first 13 week regimen is over, but he’s not done. He thought that he would kick its ass with the first regimen, like someone else you know, and is now a little depressed. So I told his dad about the bike, but he doubted that Jake would ride it much. Well O told dad, as well as Jake that it was free with one condition…..he uses it and rides with me. Hopefully it helps him mentally like it has for me. Wish us luck.
As much as I wanted my mom and mom-in-law to pass to ease their pain and suffering, but I loved them both and now am feeling the loss. My wife, whose mom was her best friend is feeling it the worst. The ride was helping me, a healthy distraction. One of the other patients noticed how riding has helped me so much that he asked where he could get one. Not knowing how much bikes are he put out a budget of $400 and I thought of a Walmart tank. Well I have him my Frankenbike which was my TM hard tail I used to pull the BOB trailer. Seeing that I don’t need it anymore I told him he could use it, that was almost 2 weeks ago when we discussed it. Well I got to the lab wart today and had the bike positioned in the lab for him…..he’s jazzed!! So that’s one of the good things.
The bad thing, which has somewhat sidelined me a little bit is a week ago Saturday my house either got hit or a close hit by lightning. My wife was in the “computer room” working on something on her newly repaired pc ( I replaced the power supply the day before) stopped working. I checked and yep, everything in the room was off. I went into the basement and saw a breaker tripped, so I reset it….sweet, easy fix. Well not so easy, it still wouldn’t power up, I checked the outlet and nothing. Long story short and by switching to active outlets, the computer fried, so did a TV, 2 Blu-Ray players, our landline phone, printers are still up in the air but power up, and outside lights. I am currently in the process of trying to think through this issue without an electrician. I know some stuff and am not in a great financial position and have plenty of time on my hands. The breaker is currently off as I work through this so don’t expect a “I burned my house down post”.
So let’s swing back to the PC which was the really big issue for my wife who had been working on a book of sorts. The book is a work in progress of my journey and she’s been working on it for the last 3 years. She’s brilliant and has had numerous conversations with my oncologist about supplements, vitamins, essential oils and such. She was hoping to figure out how to publish on line and was going to work on that soon, not that the book is done, but she has enough to get a start on line. Unlike me, she’s good with words and I’m sure that her tips would help others with cancer and even those who care for them. Well she panicked when the power supply failed and when the new one came in and I fixed it, she was happy. Well less than 24 hrs later the storm comes and poof!! Well I’m lucky to be good friends with a tech guy and he hooked me up with another pc and he told me we would take the HDD out of the old one and add to the new one. Well I opened up the old one again and took out the HDD for him to save a step or so……nothing, zilch, zip. My stomach sank, but what I didn’t know is that the was a SSD on the motherboard and it had the data. @mike_243 was able to retrieve the data and my wife’s book is safe….and I have 2 backups now. Thanks a million Mike, you rule.
You never know what life will throw at you. The father of the guy Jake, who I gave the bike to, lost his wife…Jake’s mom….a few years ago. He and I have been in communication with each other because he’s scared shit for his son. I can’t imagine what he’s going through. Jake’s been a bit bummed because his first 13 week regimen is over, but he’s not done. He thought that he would kick its ass with the first regimen, like someone else you know, and is now a little depressed. So I told his dad about the bike, but he doubted that Jake would ride it much. Well O told dad, as well as Jake that it was free with one condition…..he uses it and rides with me. Hopefully it helps him mentally like it has for me. Wish us luck.
Frank
Wookie
No, as far as Jake is concerned….im helping him by your example. You all have carried me through many rough patches and I’m privileged to be able to help him.
iman29
Well-Known Member
doesnt seem to matter what life throws at you man, you just keep fighting back AND doing the same for others.
A-MAYZE-ING
Frank
Wookie
Thanks bro……but to be honest, helping him is helping me. So I’m not that cool, just a little.
Frank
Wookie
That ride didn’t last long enough……so a couple of months ago my numbers started to go up again….but it was smaller numbers, a hundred or so each time. But doc said “let’s see if this is a fluke or a trend”, well this last test they went up 1100 points to 1880 so he decided that we have reached the end of the road with Vectibix. While it was working, and it worked well for a while, I was able to live with the side effects….the horrible skin irritation, rash, and the depleted magnesium causing my levels to drop and require infusions which is all I had today. No more Vectibix!! Hopefully the itch stops soon and I can start feeling like an adult again instead of a pimple riddled teenager.
So where do we go from here? Well first I go for a PET scan and then meet the doc in 2 weeks to see where the progression in numbers is coming from. He mentioned going back on the Avastin that I used to take and add Longserf ( an oral chemo) which he says is doing wonders….
Like I’ve said many times, it’s fucking rollercoaster.
So where do we go from here? Well first I go for a PET scan and then meet the doc in 2 weeks to see where the progression in numbers is coming from. He mentioned going back on the Avastin that I used to take and add Longserf ( an oral chemo) which he says is doing wonders….
Like I’ve said many times, it’s fucking rollercoaster.
serviceguy
Well-Known Member
Your doc seems to know what he's talking about, even though he would be a lot more credible if he showed up at the f**k Cancer ride with your nurse...hold fast Wookie!
Johnny Utah
Well-Known Member
Hang in there buddy! Pops is going for tests this week as well as we need to change some meds around.
Frank
Wookie
These last 4 years have been so damn hard. Knowing you’re not going to make it is a tough thing to live with. But the love I have received from all of you in the cycling community has made such a fucking difference and I truly believe it has helped me survive this far. Your post literally made me cry Ed, it was beautiful and I thank you so much for those words. ❤️❤️❤️
iman29
Well-Known Member
Like the previous times you have had to deal with this, the result stays the same: you tell Cancer to F*ck off. so this time will be the same no doubt. Hang tough.
Juggernaut
Master of the Metaphor
Obviously, not loving the numbers. But, Amin’s been talking up the oral chemo for a WHILE now. There HAS to be a reason why. In terms of the Vectibix, I look at it like a knuckle-ball pitcher. You bring him out when the batters start to catch up to the fastball. It baffles the hitters for a while; but eventually, you’re gonna bring back the lefty with a cannon for an arm to strike out the side.
SAM
Well-Known Member
Wishing you the best with the new regimen, Frank and I know you will eff eff'n cancer.
Frank
Wookie
Well today I received a little bit of stink eye from Alex as she wanted to know what’s going on. She could see the schedule and noticed only Magnesium infusion planned for me. Then while I was getting said infusion Dr Amin comes in and says that we are not going to wait and do scans, we are jumping into a new protocol. Now the plan is to go with Avastin ( Zirabev generic) infusion with Benadryl and Lonsurf, which is an oral chemo that I will take multiple days on a schedule. My hope at this point is that a) this can make a big difference since my numbers are not super high and b) the grants they got in January will still work. Now I will also have to shop for a prescription plan which is not included in any of my Medicare shit. Oh yeah, Alex was much happier after Doc talked to me….she was hovering over Dr Amins shoulder.
Like I said last time, I’m glad he’s got this plan and he said if the numbers don’t come down then we will scan and go from there. I kind of like the “strike while the iron is hot” plan for now. I hope this all works out.
I felt pretty poorly last week and I was slightly concerned but my symptoms all could be from the low Magnesium levels ( .7 down from .8) normal levels are between 1.7 to 2.2 so I received 2 grams today and we will see what todays starting level was when I get lab results tomorrow. Hopefully they start to climb again because I am no longer taking the Vectibix which is responsible for the decline. I spoke with Rikki and asked her how long it would take for the side effects of the Vectibix to clear up and she said months….🤦 I can deal with the skin rash, but not the weakness.
At the end of the day, I’m still here!! I began this journey over 4 years ago and everything looked bleak for a while. I’ve had some ups and some scary downs, but I remain hopeful because I have the greatest team behind me.
Like I said last time, I’m glad he’s got this plan and he said if the numbers don’t come down then we will scan and go from there. I kind of like the “strike while the iron is hot” plan for now. I hope this all works out.
I felt pretty poorly last week and I was slightly concerned but my symptoms all could be from the low Magnesium levels ( .7 down from .8) normal levels are between 1.7 to 2.2 so I received 2 grams today and we will see what todays starting level was when I get lab results tomorrow. Hopefully they start to climb again because I am no longer taking the Vectibix which is responsible for the decline. I spoke with Rikki and asked her how long it would take for the side effects of the Vectibix to clear up and she said months….🤦 I can deal with the skin rash, but not the weakness.
At the end of the day, I’m still here!! I began this journey over 4 years ago and everything looked bleak for a while. I’ve had some ups and some scary downs, but I remain hopeful because I have the greatest team behind me.
Frank
Wookie
Update:
Well in my last post I mentioned that I was feeling poorly which had everything to do with the flu. I tested negative for covid so it was just a normal type thing, but when you are weak from chemo it just makes things worse.
So yesterday I finished my first course (2weeks) on Lonsurf……it kicked my frickin ass. The first week was really rough and I spent a lot of time sleeping. Now I was on the tail end of the flu so that probably didn’t help much. So the drug is taken twice a day for 5 days straight, its effects are exhaustion, lightheadedness, stomach irritation and diarrhea. Thankfully only the first two really hit me. So now I get 2 weeks off before I start the next round and I can hopefully build up a bit before I start again.
Missing the fest again is killing me. I always enjoyed them and it was always great to see everyone there….maybe next year. It was awesome to get texts offering rides to the fest, but I still would have felt only 25%, so I bowed out.
Thanks to everyone who has called or texted me wondering where I’ve been, you all mean the world to me.
Well in my last post I mentioned that I was feeling poorly which had everything to do with the flu. I tested negative for covid so it was just a normal type thing, but when you are weak from chemo it just makes things worse.
So yesterday I finished my first course (2weeks) on Lonsurf……it kicked my frickin ass. The first week was really rough and I spent a lot of time sleeping. Now I was on the tail end of the flu so that probably didn’t help much. So the drug is taken twice a day for 5 days straight, its effects are exhaustion, lightheadedness, stomach irritation and diarrhea. Thankfully only the first two really hit me. So now I get 2 weeks off before I start the next round and I can hopefully build up a bit before I start again.
Missing the fest again is killing me. I always enjoyed them and it was always great to see everyone there….maybe next year. It was awesome to get texts offering rides to the fest, but I still would have felt only 25%, so I bowed out.
Thanks to everyone who has called or texted me wondering where I’ve been, you all mean the world to me.
serviceguy
Well-Known Member
It’s probably time for another F&&k Cancer ride then?
Great to hear from you Frank. We're all thinking about you. Keep fighting the fight. FK C.