Hold fast - updated 12/29/17 3.00pm
December 28, 2017 Back to In the Beginning
I wasn't going to crank out another post until Thursday when I do the next blood test and get the port put in. Then my friend and awesome golfer, Steve Nicoletti, comments on my post with this study out of USC (Gotta be good if it's from Lisa's alma mater!):
Fasting-like diet turns the immune system against cancer.
So I grouse that when are they going to find a cure that drowns cancer in Jameson's?
This is three days of fasting; 2 before chemo, and day of chemo. Not like I can't use to lose a few, but I've never even made it halfway through Yom Kippur.
Anyway, I send the link to Kaleigh and she gets the word from Dr. V. that he doesn't see any harm if I want to try it.
Well, that was my last lifeline to get me out of this, so I guess I have to fast. At least I can keep up the volume of water throughout, so if I get hungry, I can down a pint. (Not quite the beverage I'm used to associating with downing a pint)
December 27, 2017
Lots of errands to run today.
Make an appearance at work.
Ordered three pounds of cookies from Freed's Bakery for the nurses in the wing I stayed in at Summerlin Hospital and a jar of peanut M&Ms for RN Sue, who seemed to be popping them down pretty consistently, and who works in a different wing. Of course the website doesn't order the cookies from the Freed's near the hospital, maybe because I ordered from work and it used my location.
Get a yoga mat.
Pick up our dogs from the house.
Then over to the hospital.
Take the mutts for vaccines.
Then to Quest for a blood test that was missed in the order for the port insertion tomorrow.
I was going to hold on publishing this, but get requests for updates, so I will post and update this live through Friday.
So far every time I feel a hunger pang, I down a can of La Croix club soda. Seems to work and no loss of energy except for that due to not sleeping enough.
December 28, 2017
This has really brought me back in touch with a bunch of people. I guess the big C adds some urgency. I spoke to Steve and Grace Hoffmann, old friends from college, last night. Steve worked for DEC/Compaq/HP for 39 and a half years. I don't know how he survived the turmoil. They laid him off 4 months before he turned 65. But gave him 5 months severance, no gold watch. He was contemplating retirement anyway, so this pretty much pushed him into it. Great conversation.
Speaking of company ethics, a long while back Mikki worked for a company doing insurance audits. She mentioned to HR that she was having thyroid issues and asked some questions about benefits. They in turn told her boss, who took it to mean cancer, and he fired Mikki because he didn't think she would be able to keep up with the work load. At the unemployment hearing, Mikki got him to admit that was the reason and the company lost the appeal and Mikki got her benefits. As a result she is gun shy about me making this known around work. (We'll be going out to the range with my new 12 gauge to take care of the gun shyness.)
Next week I expect to start losing hair. So to hide that, Mikki found wigsis.com. This is going to be my new hair. Wish I could have his teeth too.
In this color: 
Don't try to tell me you don't know who he is if you were in college in the '70s. I'd never have the patience to grow that 'stache. He has my hairline though a bit longer.
1pm
Andrew and I go into SDMI for the port placement. Sitting in the waiting room with my backpack full of La Croix orange, I notice that the inside of my mouth tastes like dental fillings and salt. Mostly behind the back teeth and along the sidea amd back of the palate. I mention it to Andrew, "Geesh, the inside of my mouth tastes like....." And I look down at my hand wrapped around the can. "Oh shit, that's what I've been tasting."
Well at least it helps with fasting. Nothing looks good to eat.
3 pm
Done with all that. Got to SDMI at 1 pm and done by 3 pm. Told Andrew it was going to be 4 hours. So have to wait for him.
Scroll down to the bottom to see what the port looks like:
Chemo port
They were just giving lidocaine for the procedure and asked if I wanted to have something to relax.
I once had a benign tumor on the base of the back of my head, right below the skull. They just used lidocaine and dug a bit past the numb part. Absolutely blinding, searing pain where you can't even say anything.
I opted to relax this time. I don't know if the drugs were supposed to knock me out or if it was because I was so tired. I went out like Sonny Liston in round 1. They said I was snoring away. Fine with me.
I also got a copy of the Pet Scan CD so we can see for ourselves where the cancer was hiding in my bones. Sucks to be fasting and waiting for a ride next door to Aces and Ales.
9:39pm
Nothing yet, but did open the Pet Scan and Xray on my PC. Here's the Pet Scan - the light bulb is my bladder - something that's lit up and shouldn't is cancer. Can see some in the spine too.
Here is the chest Xray showing the port just to the right of the sternum by the second rib.
10:43pm
Don't feel a thing. The edibles take some experimentation. At least I started at the bottom.
Dexember 29, 2017
2am
Got 2 hours' sleep then wide awake and still the same pain. I wonder if I am getting too used to the Tylenol. Too late to take a bigger dose of RSO because I have to drive in the morning and who knows how long it will last. Maybe right before chemo.
I've noticed that the tips of my fingers have been getting numb. Stuff just flies out of my hand unless I consciously grip them tightly. Especially with pens. With all these Dr and lab visits there are ways check-in sheets, forms, and receipts to sign. Invariably I go to give the pen back and it comes flying across the desk at them like a dart.
Texting with my cousin Tom last night and I send him the list of meds they are giving me during chemo and what I'm taking outside of those:
Denosumab - Xgeva - for bone hardening
M-VAC - includes the stuff below
Olanzapine 10mg/1/day/4-6 days - for nausea
Tylenol 500mg/2/6 hrs - for bone pain
Doxycycline 10mg/1/12hrs till 12/30 - antibiotic from hospital
Pegfilgrastim- (Neulasta)- white blood cell boost
Filastrim (Neupogen)-white blood cell boost
Platinol - cancer fighter- fighting fast dividing cells
Vinblastine - slows growth of cancer cells
Methotrexate Sodium - tumor fighter by interfering with DNA replication in fast growing cells
Adriamycin - (dozorubicin) - damages cancer genes so they can't reproduce.
Dexamethozone - steriod -counters the side effects of the other drugs gives ants in the pants feeling
Emend - antinausea IV before MVAC
He texts back:
"I'm glad you're on that. My onc switched me to platinol based on recommendation of one of his colleagues who studies BRCA2. Evidently, studies show that the Platinum in the Platinol results is greater odds of making it past 5 years for people with genetic predisposition to cancer." So Mikki was very relieved to get that ray of hope.
6am
Dozed avout 3 hrs sitting on couch. Got up and noticed that the pain was much diminished although the leg is very weak. Seems RSO did finally do something, because the Tylenol certainly wore off by now. I find that breathing control is key to getting through the pain when you know the move you're about to make is going to hurt. A couple of really deep breaths a second before and during the move helps more than drugs. But the drugs take the edge off the ones you don't see coming.
10:15am Mikki and I were a bit wound up this morning and I snapped at her. An hour later, we are sitting in the exam room waiting for Dr. V. I said, "I wonder if they will put a noose around my neck to provide strain relief for the IV going into the port?" Mikki says, "If they do and you snap at me again, I'll tighten it." We both started laughing. That's the way to end a tiff.
10:30am
Just met with onco he said there is no BRCA2 in tumor, but that doesn't rule out it being in the blood. He recommended a geneticist who can perform more in depth genetic testing.
He said the claims about marijuana are BS. He said stem cell therapy might be an option to save the bladder but postponed the discussion until the time is right. He pointed out a couple of genes that were mutated, but inconsequential.
So with that and this hardware inside me, I guess I'm a mutant and a cyborg.
I've called his assistant with questions three times about the fasting, marijuana and whether its okay to get vaccines while on chemo (it is). He said WHEN my hair falls out tomorrow and I call about it, he's going to say it's due to the weed. 😊 I laughed and said, "Yoi mean like 'FWUMP' and it all falls out?" He said it happens. He could be kidding as payback. Great sense of humor.
I'm still going to double the dose tonight. Might help if USC loses.
11:15am
Brought back to start chemo. A couple shots of bone hardener and steroid and saline drip for hydration to start. 12:15 Chemo pushes starting. Dioxyrubicin is in a tube the size of a caulking gun and its color is cherry red. Takes a while to push but not like last week.
12:25pm Wow. 3x faster for the pushes and on to another hydration phase of saline. Then at 1:00pm, the platinol drip for two and a half hours. Right on time.
2:30pm Woke up to having to pee like a race horse. Phew that was some sleep. Any deeper and I would have gotten embarrassed. Ha... like THAT would embarrass me. I've done worse in public, but let's not go there. Alyssa, my nurse, said I'm tracking on time to be done by 3pm..and I was. Got up and leg is 25% more stable.
Next: Two down, two to go
I wasn't going to crank out another post until Thursday when I do the next blood test and get the port put in. Then my friend and awesome golfer, Steve Nicoletti, comments on my post with this study out of USC (Gotta be good if it's from Lisa's alma mater!):
Fasting-like diet turns the immune system against cancer.
So I grouse that when are they going to find a cure that drowns cancer in Jameson's?
This is three days of fasting; 2 before chemo, and day of chemo. Not like I can't use to lose a few, but I've never even made it halfway through Yom Kippur.
Anyway, I send the link to Kaleigh and she gets the word from Dr. V. that he doesn't see any harm if I want to try it.
Well, that was my last lifeline to get me out of this, so I guess I have to fast. At least I can keep up the volume of water throughout, so if I get hungry, I can down a pint. (Not quite the beverage I'm used to associating with downing a pint)
December 27, 2017
Lots of errands to run today.
Make an appearance at work.
Ordered three pounds of cookies from Freed's Bakery for the nurses in the wing I stayed in at Summerlin Hospital and a jar of peanut M&Ms for RN Sue, who seemed to be popping them down pretty consistently, and who works in a different wing. Of course the website doesn't order the cookies from the Freed's near the hospital, maybe because I ordered from work and it used my location.
Get a yoga mat.
Pick up our dogs from the house.
Then over to the hospital.
Take the mutts for vaccines.
Then to Quest for a blood test that was missed in the order for the port insertion tomorrow.
I was going to hold on publishing this, but get requests for updates, so I will post and update this live through Friday.
So far every time I feel a hunger pang, I down a can of La Croix club soda. Seems to work and no loss of energy except for that due to not sleeping enough.
December 28, 2017
This has really brought me back in touch with a bunch of people. I guess the big C adds some urgency. I spoke to Steve and Grace Hoffmann, old friends from college, last night. Steve worked for DEC/Compaq/HP for 39 and a half years. I don't know how he survived the turmoil. They laid him off 4 months before he turned 65. But gave him 5 months severance, no gold watch. He was contemplating retirement anyway, so this pretty much pushed him into it. Great conversation.
Speaking of company ethics, a long while back Mikki worked for a company doing insurance audits. She mentioned to HR that she was having thyroid issues and asked some questions about benefits. They in turn told her boss, who took it to mean cancer, and he fired Mikki because he didn't think she would be able to keep up with the work load. At the unemployment hearing, Mikki got him to admit that was the reason and the company lost the appeal and Mikki got her benefits. As a result she is gun shy about me making this known around work. (We'll be going out to the range with my new 12 gauge to take care of the gun shyness.)
Next week I expect to start losing hair. So to hide that, Mikki found wigsis.com. This is going to be my new hair. Wish I could have his teeth too.
In this color:
That's a bit more hair than I have, and I haven't been able to part my hair since puberty when it went stupid curly. Now that it's straight again, I don't have enough in front to make a part not look like a bad comb-over. Should be interesting. I am picturing having sweat running out like a judge seeing his whore in church. Bought a bunch of hats too, three, like what the guy on the Zig Zag package wears.
Don't try to tell me you don't know who he is if you were in college in the '70s. I'd never have the patience to grow that 'stache. He has my hairline though a bit longer.
I have no idea if hats and the wig are mutually exclusive. Maybe the hats will just provide transition, although I have a feeling once fall starts, it'll be time to buzz it off. I've never even had a crew cut as a kid, so a buzz will be a new feeling. See? It's all an adventure.
I found a yoga app for my phone which says it allows you to customize your workouts. Always my peeve, since I did yoga in the '70s, was finding a way to organize the poses so the workout flows the way I want it. Yoga.com is free and says it has that capability. I can't find that option even though I upgraded to the paid version, so I sent them a note. It will be even more important given the limitations with my leg. Mikki decided that she wants to try it too, despite the damage done to her neck by a quack chiropractor. I assured her that anyone can do yoga because you just do it within your own limitations.
Busy day again - appearance at work, blood test at CCCN, stop and see Carmela, Suzanne Noble, Albert Wu, and Gail at the county, pick up a yoga mat for Mikki, go home, meet up with Andrew and go to Steinberg to have the chemo port put in - about a 4 hour operation....yay Propophol, finally getting some sleep.
This fasting with water (club soda) is a breeze.
[I realized that I have been going back and adding. editing prior posts, and there's no way to flag them so people can go back to see what they missed. I'll put last update dates in the headers for that purpose. Because as we know, it's all about you all.]
1pm
Andrew and I go into SDMI for the port placement. Sitting in the waiting room with my backpack full of La Croix orange, I notice that the inside of my mouth tastes like dental fillings and salt. Mostly behind the back teeth and along the sidea amd back of the palate. I mention it to Andrew, "Geesh, the inside of my mouth tastes like....." And I look down at my hand wrapped around the can. "Oh shit, that's what I've been tasting."
I thought that the problem of metal utensils was mostly a problem rigbt after chemo. Plus, since I wasn't actually putting a can on my tongue and the can inside is coated, I thought drinking from a can would be ok...or just forgot that it wasn't, grabbing cans automatically.
WRONG!
3 pm
Scroll down to the bottom to see what the port looks like:
Chemo port
They were just giving lidocaine for the procedure and asked if I wanted to have something to relax.
I once had a benign tumor on the base of the back of my head, right below the skull. They just used lidocaine and dug a bit past the numb part. Absolutely blinding, searing pain where you can't even say anything.
I opted to relax this time. I don't know if the drugs were supposed to knock me out or if it was because I was so tired. I went out like Sonny Liston in round 1. They said I was snoring away. Fine with me.
I also got a copy of the Pet Scan CD so we can see for ourselves where the cancer was hiding in my bones. Sucks to be fasting and waiting for a ride next door to Aces and Ales.
Picked up some Rick Simpson Oil (RSO) at Thrive dispensary. Closest thing to a medical marijauna product with all the benefits and no card needed. Dispensary was very well set up and efficient. Staff knew the products well. Hoping it lets me sleep through the pain. All I want to do is be able to sleep on my side.
Cannavative RSO - putting the trip in John's Cancer Trip.
(Cannavative products are only available in NV, but many growers make a version as Rick made the process public)
Not exactly easily portable after opening.
So I dropped 2 1/4 grains of rice-sized doses at 8:15pm. I let you know how it goes on 2 hours when it is supposes to kick in....if I can still type.
Nothing yet, but did open the Pet Scan and Xray on my PC. Here's the Pet Scan - the light bulb is my bladder - something that's lit up and shouldn't is cancer. Can see some in the spine too.
Here is the chest Xray showing the port just to the right of the sternum by the second rib.
10:43pm
Don't feel a thing. The edibles take some experimentation. At least I started at the bottom.
Dexember 29, 2017
2am
Got 2 hours' sleep then wide awake and still the same pain. I wonder if I am getting too used to the Tylenol. Too late to take a bigger dose of RSO because I have to drive in the morning and who knows how long it will last. Maybe right before chemo.
I've noticed that the tips of my fingers have been getting numb. Stuff just flies out of my hand unless I consciously grip them tightly. Especially with pens. With all these Dr and lab visits there are ways check-in sheets, forms, and receipts to sign. Invariably I go to give the pen back and it comes flying across the desk at them like a dart.
Texting with my cousin Tom last night and I send him the list of meds they are giving me during chemo and what I'm taking outside of those:
Denosumab - Xgeva - for bone hardening
M-VAC - includes the stuff below
Olanzapine 10mg/1/day/4-6 days - for nausea
Tylenol 500mg/2/6 hrs - for bone pain
Doxycycline 10mg/1/12hrs till 12/30 - antibiotic from hospital
Pegfilgrastim- (Neulasta)- white blood cell boost
Filastrim (Neupogen)-white blood cell boost
Platinol - cancer fighter- fighting fast dividing cells
Vinblastine - slows growth of cancer cells
Methotrexate Sodium - tumor fighter by interfering with DNA replication in fast growing cells
Adriamycin - (dozorubicin) - damages cancer genes so they can't reproduce.
Dexamethozone - steriod -counters the side effects of the other drugs gives ants in the pants feeling
Emend - antinausea IV before MVAC
He texts back:
"I'm glad you're on that. My onc switched me to platinol based on recommendation of one of his colleagues who studies BRCA2. Evidently, studies show that the Platinum in the Platinol results is greater odds of making it past 5 years for people with genetic predisposition to cancer." So Mikki was very relieved to get that ray of hope.
6am
Dozed avout 3 hrs sitting on couch. Got up and noticed that the pain was much diminished although the leg is very weak. Seems RSO did finally do something, because the Tylenol certainly wore off by now. I find that breathing control is key to getting through the pain when you know the move you're about to make is going to hurt. A couple of really deep breaths a second before and during the move helps more than drugs. But the drugs take the edge off the ones you don't see coming.
10:15am Mikki and I were a bit wound up this morning and I snapped at her. An hour later, we are sitting in the exam room waiting for Dr. V. I said, "I wonder if they will put a noose around my neck to provide strain relief for the IV going into the port?" Mikki says, "If they do and you snap at me again, I'll tighten it." We both started laughing. That's the way to end a tiff.
10:30am
Just met with onco he said there is no BRCA2 in tumor, but that doesn't rule out it being in the blood. He recommended a geneticist who can perform more in depth genetic testing.
He said the claims about marijuana are BS. He said stem cell therapy might be an option to save the bladder but postponed the discussion until the time is right. He pointed out a couple of genes that were mutated, but inconsequential.
So with that and this hardware inside me, I guess I'm a mutant and a cyborg.
I've called his assistant with questions three times about the fasting, marijuana and whether its okay to get vaccines while on chemo (it is). He said WHEN my hair falls out tomorrow and I call about it, he's going to say it's due to the weed. 😊 I laughed and said, "Yoi mean like 'FWUMP' and it all falls out?" He said it happens. He could be kidding as payback. Great sense of humor.
I'm still going to double the dose tonight. Might help if USC loses.
11:15am
Brought back to start chemo. A couple shots of bone hardener and steroid and saline drip for hydration to start. 12:15 Chemo pushes starting. Dioxyrubicin is in a tube the size of a caulking gun and its color is cherry red. Takes a while to push but not like last week.
12:25pm Wow. 3x faster for the pushes and on to another hydration phase of saline. Then at 1:00pm, the platinol drip for two and a half hours. Right on time.
2:30pm Woke up to having to pee like a race horse. Phew that was some sleep. Any deeper and I would have gotten embarrassed. Ha... like THAT would embarrass me. I've done worse in public, but let's not go there. Alyssa, my nurse, said I'm tracking on time to be done by 3pm..and I was. Got up and leg is 25% more stable.
Next: Two down, two to go
