You asked for it, but even guys go 'ew' Updated 7/26/18
July 26, 2018 Back to In the Beginning
Disclaimer: So my decision to not write in my blog was because it seemed like dwelling on the past and not looking forward may have been impetuous. However; the original idea was to have one central place for people to go to get an update instead of me repeating my status individually. I have a ton of material from the last two weeks, but for two male friends to whom I relayed all the gory details, it was a bit much, given that I was admitted to the hospital for low hemoglobin due to a 4 week round of morphine. Probably way too much info for most of you. I could just give the highlights. Anyway, I'd like to hear from those who read it to see if you want me to continue. Once the Tour is over I will have more time.
The other half of the question - summary or gory details? Not having gotten responses I'll give you only the summary, and if ita not enough, change the channel or fast forward or private IM if you need specific advice.
7/26
I haven't made the latest update, but I haven't slept all night yet and have several pages I have not published as i have been copying content from IMs, FB posts, etc so I wouldn't have to try to recall it all, but some of it is out of order. We are all adults, although someday I hope my grandkids read it. I will try to describe the nasty parts using clinical terms. Rather than how I described it to my male friends. This time unlike others, because there is so much detail and I need to see it on a bigger screen to get it in the right order, I won't publish till its ready, although Suzanne Wiener, has edit rights, so she could take a sneak peek.
I do think this entry is important because some people made mistakes, as usual, that put me in the hospital, that others should know to look for.
I also am getting chemo today and will spend 4 hours doing nothing, although, I expect I will crash by then. Let's go back to where we left off at the prior blog entry.
Post 7/12 realizations
Because so many things were happening at around the same time, I never knew which side effects were to blame on which treatments. Turns out pretty much all the new ones are the fault of radiation, which I concluded after much reflection, revisitation of the timeline and a final discussion with my cousin Tom. There were a lot of conversations over these 2 weeks, esp between my family and I, that I will leave out because they were based on incorrect conclusions. Dr V claimed that both radiation and chemo were to blame, although I seriously doubt he knows based on other statements he made in the conversation.
7/13
The lymphedema therapist recommended that I exercise as par of my therapy. I was able to get on our stationary bike for two days, but by the third day, my pain was so bad that even with extra padding, I couldn't sit on this fairly wide seat for only 2 minutes.
I was having a lot of trouble with my system that have progressed from Tuesday to the point today. My system was bothering me by now and it was very intense and painful.
I was to fly the next Monday to AZ for second opinion at Cancer treatment center of America in Goodyear, AZ. It was the only free week I had with no doctor appointments, except for a lymphedema therapy session on Monday, as I had left Wynn on disability in May.
With my system acting up, I didn't know how I would be able to do the flight. I called Lisa and Rabbi to ask them and they suggestion something to take before the flight, but didn't know how long it would last. The pain management doctor had said that I might have some after effects from the morphine I took during radiation, just to be able to withstand the pain of lying on that hard scanner with my broken hip bone. The prescription said 15 mg every four hours as needed and I took that plus 3 Tylenol every 4 hours and it barely took the edge off. After radiation was done, I wanted to get off the morphine since I knew it could lead to problems, but Kunal, the pain doctor, said to take it slow getting of and just take a half dose of medicine a day to keep things in order. Little did I know until later that was very understated advice and I was already severely affected.
I had so much pain around my midsection already from the broken hip bone, cancer in the lymph node, sore back, messed up gait from using a cane, that any new pain was unnoticeable. Kunal never physically examined me or he might have known.
7/13
I never got the new medicine, because I thought it would conflict with what Kunal had me take.
7/14-15
The weekend was busy with packing, laundry, going over schedules, booking transportation, TSA precheck, and wheelchairs. My leg would be wrapped in the lymphedema wraps and there was no way I would be able to get through the airport walking, plus my hip was killing me.
7/16
I am supposed to have a lymphedema appointment 2-3 times a week, but since I was going to be gone, I booked them for Monday and Friday. I went Monday and fortunately got the therapist who did my first analysis.
I had messed up the video recording of the wrapping process I had done the week before and wanted a fresh video. Jen, the therapist did a much easier process and explained every step, while I pointed out the parts of the leg being wrapped. Once the first layer is on it is difficult to tell where the knee is.
Ended up with a great video that I would be able to follow easier. I got home and 2 hours later it was time to go for the airport.
I make it to the airport, check in at curbside, and get the wheelchair, and head to the gate
The flight was uneventful but took forever it seemed to board since I got on first.
I was staying with our long time friend, Lucille Hunt and her dad Mike Monte, who both picked meup at the airport.
7/17
I wasn't feeling well before I got there the whole week before, blaming it on weaning off the morphine too fast. The next day we took the cancer center tour and they took blood work and I signed up for future treatment with finance. I met with the Patient Advocate, the Cancer fighter ambassador program, and nurse navigation orientation , Due to some rawness of rashes, I asked if I could get an appt with their wound care dept. By the end of the day I had an appt first thing Thurs.
7/18
I could have gotten wound care this morning, except I have to have met with the oncologist first, so I have to wait till Friday, as the oncologist meeting was later in the day Thursday. I talk to the chaplain about an advanced directive which we had already submitted that was good for both NV and AZ. Got more vital signs taken. Met with the urologist for an hour who actually did an exam and said I also had some lymphedema in the left leg. Oh great. However; there wasn't much he could do that the Vegas urologist had or intended to do, which was replace the nephrostomy tube every 3 months till the cancer is cured.
They tell me I need a transfusion as my hemoglobin was low at 7.2, but I didn't think they meant right away.Get the schedule for the next day's meetings with the dietician, naturopath, and oncologist. By the end of the day I had an appt first thing Friday before we leave. We meet with our nurse navigator just before we leave. I was pretty far out of it by our meeting with the oncologist and was having trouble following some of the conversation. I did get that he wanted me to finish the current round of chemo, get a PET CT scan, then consider a clinical trial involving the FGFR3 gene with them by the beginning of Sept.
7/19
I get a call from CTCA that they can't do the wound care till 3:30. I can't wait that long, since our flight is at 5. I am really fading and I call my cancer center in Vegas. When they call back, I fall apart, but got over that my hemoglobin was in the tank. They say to get directly to the hospital. My friend donated a kidney to her uncle at Mayo and her older extended family members are all frequent flyers there. She get us into emergency evaluation by calling ahead as soon as we walk in the door. A quick round of vitals and I am whisked to an ER exam room. Then a mob of docs show up and I'm incoherent. Can't give straight consistent answers, didn't know if I had diarrhea, got dates and days all mixed up, didn't know if I was constipated. Inside of 2 hours, they have a room on the 7th floor ready. I can't have anything but clear liquids for a sigmoidoscopy in the morning.
I am back in a hospital bed. Not too serious but side effects got to me. But wanted to pass on what I observed about foreign raised doctors. Lisa agreed so don't think its a bias.
They are very linear. They only know one way to ask a question, so if they don't get the answer they want they repeat the same fucking question, plus they only know one specific meaning for a word like diarrhea. If I call it that, I am including all variants.. They seem to only know that its mostly water .although we never figured out then what each other meant. Part of it is because they don/t have depth in reading different uses of the language in novels, etc. Kind of like Trump.
Down in the ER, Indian/Arab/Pakistani docs were asking what color my blood was, and I said Indian Red. I wasn't thinking because there was a reddish brown Crayola crayon that was named that way when I was a kid. I just realized that name was probably banned 50 yrs ago as being offensive and these guys are in their 30s. I didn't realize it till I was lying in bed 6 hours later.
Btw Mayo Hospital is amazing, level of care is miles above anything in Vegas.
7/20
Time for prep for the sigmoidoscopy.
The sigmoidoscopy folks finally give their ok to continue. They wheel me down and knock me out. Finally get back to room and get something to eat as I was really out of my skull with low hemoglobin and hunger. Started making lists and watching the TdF.
7/21
They do a CT with contrast, and the bed hurts my hip as much as it did during radiation. There is not much to do the rest of the day, so I watch youTube channels and make lists of questions for upcoming Doctor visits.
That night, I had a lot if time to myself so I made my bucket list and sent it to my cousin Tom Z who is going through a second round of bowel cancer, so we consult each other a lot: I make up my bucket list for fun:
[ ] Go to an O'Flaherty family reunion - turns out this year, I may be just going by Skype. Checked with onco on 7.26 and with upcoming chemos prior to the trip didn't think it would be a good idea.
[ ] Go see George Sublette
[ ] Take Ellie to north NV to see caverns
[ ] Go offroad in Jeep to Gold Butte
[ ] Open a CTCA in Vegas
[ ] Build the UNLV medical school
[ ] Seeing Lisa get an ER Fellowship
[ ] Make wine with Lisa
[ ] Learn long range shooting
[ ] Get CCW, M&P Shield 2.0 and Kahr CW9 - wife even wants one
[ ] Build body to 2014 strength
[ ] Learn differential equations
[ ] Go to Iceland, Greece and Israel with Mikki (Lu probably wants to come too) would love to bike the length of Israel with the IDF wounded warriors
[ ] Watch Ellie do the breaststroke like her mom used to - looked like a baby seal, barely broke the surface
[ ] Teach Ellie woodworking
[ ] Build a personal home brewery, wood workshop, bicycle maintenance shop, and set up trains at home or in a small industrial building
[ ] Go fishing
[ ] Train max to hunt ducks snd hunt in Overland Wash
[ ] See Lisa happy
[ ] Watch Andrew be successful
[ ] Watch Andrew fall in love - didn't realize that would start to happen the day I got back
[ ] Go turkey and boar hunting with Chris Ideker in Utah
[ ] Go see TdF and ride up the Peyrizord
[ ] Go back to Valley of Fire - will have to wait till Oct when its not in the 100s
[ ] Ride Red Rock Loop with Jeff Freilach
[ ] Hang out with cousins Ronnie and Clair and Tom Z
[ ] Visit family in Galway and Germany
[ ] Ride with Lance
[ ] Visit Zion and Yellowstone National Parks
[ ] Ride a bike thru Tucsons Saquaro Natl Park
[ ] Ride the whole River Mountain Look with Eric Dimlanta and./or Mauricio Prado
[ ] Ride TOSRV when I am 76
[ ] Ride the Pacific Coast by bike
[ ] Ride the US northern route by bike from West to East
[ ] Ride a segment of RAGBRAI
[ ] Teach Ellie to ride a bike
[ ] Get Ellie to learn horseback riding starting at 5 or 6
[ ] Ride up Pecos to June Bug Mine Road to Gass Peak on the gravel - going to have to wait since they just tore out the interchange while I was gone
[ ] Get professional bike fits done
Over the next few nights added a couple more to it. Obviously there's no order to this as some can't be done for several years, which is the idea. Feet have been running hot and cold every few hours.
7/22
Up all night, 2 am moved to recliner which most rooms don't have. Thought ahead and put the pad from the bed on it. Got some sleep eventually.
The food w'as off the hook with a mushroom gravy on the chicken that was off the hook. Docs came by and gave updates. Rectum had been burned by the radiation, so it had no control, morphine backed it up increasing pressure. The nurse had provided a cream for the rashes that was working well and easing the hemorrhoids - the cream is Medline Remedy Phytoplex Protectant Z Guard Paste.
7/23
Same kind of morning. Got released and had the nurse print all the hemoglobin reports and at least it went up to 7.7 from 7.2. Steak and liver were prescribed and by the time I had another blood test in a could days it got up to 8.6. I rolled out in early afternoon and took everything that wasn't nailed down including a clean bed pad.
7/24
Odd night. Wanted to go to bed but sheets were in the dryer and I was beat. Went to bathroom and sat on couch waiting for Mikki to make the the sheets. I have a lymphedema wrap on my right leg so it is like a cast and makes getting out of bed at night impossible.
Dead asleep at 11 on the couch. Woken up at 12 to come to bed but I was out of my mind groggy. Messaged with my cousin Tom till 2 when I got sleepy again. Went to bathroom again as per my usual 2 hour cycle. Took 1000 mg Tylenol for hip pain. I got up and sent an IM to my cousin Tom, while I had the though, not expecting a reply so late.
Tom and I covered several hours of family history, including when I missed my father's passing but at least saw him the week before and went back and me and my sister Marge stole his ashes from his wife so we could bury him with our Mom. We covered a lot of family history and it was like a veil removed as I made more connections and remembered details I'd long forgotten. We talked about the amount of cancer in the family going back hundreds of years and all the hardships and terrors our ancestors faced. Especially both my parents . I have a family history blog to update with new stories.
We each talked about our lives and realized we both had also gone through hardships, but we made it this far.
We talked about where our journeys are leading. Mine us that:
CTCA wants me to search out potential trials targeting the FGFR3 gene and they will get me on any that look promising. If I beat it and get surgery I will go for an Indiana pouch -a rebuilt bladder on the inside you catheterize to empty thru a stoma.
No retraining to contract different muscles to operate a new bladder which takes 9 months and no external bag that gets in the way with a hole in your side that can introduce infection. I lready have that with this nephrostomy.
Toms bucket list response:
I love that list! My favorite is the teaching Ellie woodworking one. I think that's the key to (sort of) living forever. Every time I pick up my tools and do something handy I think of my grandfather who taught me how to use them. Those are the impressions that really stick to the heart and soul. Crying is okay. I do it when no one is around. This is scary as so I think we're entitled to have some emotions about it, to purge that out and get on with moving forward. Are you back in LV or still in Scottsdale? My Dad is fighting to get better. He's on oxygen and isn't able to talk a lot so I haven't talked to him on the phone yet. He tried calling me Sunday morning but my ringer was turned off on my phone so I missed it. Beyond frustrated that I missed his call over something that simple. Sometimes I miss the days when the phone just rang like it is supposed to and just pick it up to answer it. Simple. Anyway his lungs aren't exchanging CO2 properly and he's anemic (hemoglobin) so that's the focus right now to get him strong enough for surgery.
I have gotten so much clarity in this week getting away from the routine. I have never felt this determined thru this. I have also gotten so much closer to my family and dependent on them and they have stepped up like storm troopers.
We talked about 9/11, my cousin FDNY Chief Brian O'Flaherty and how his survival of that day inspired me to join an urban search and rescue team. Then we talked about my daughter Lisa's experience triaging and treating many of the Vegas 10/1 victims while working as a pediatric ER doc at Sunrise Hospital.
We hung up the thread but I still couldn't sleep and went outside.
The sky is dark and the moon has set. Jupiter looks like a beacon in the SW! My Dad was an amateur astronomer and would have loved this view. A shooting star. Cassiopeia is shining like the queen she is in the north east.
Stuff to live for.
I asked Tom if his tastes in food were affected by chemo and radiation, or if he had gotten any supertaste symtoms. I got so sensitive to salt that I can taste it in a bottle of Arrowhead. Might as well be seawater. I have to add lemon juice to it.
I cannot eat any fast food except the milk shakes. No soup. No bacon.
I know I will accomplsh my bucket list over many years deep in my soul. The light from Jupiter last night felt like God. And I am an atheist...or was till a few hours ago.
My cousin Tom Z asked me the next day how I was doing.
Since we had both been on chemo and had our bowels radiated, Tom offered that he had radiation burns for about 6 weeks after finishing his last zap. He took
Imodium to increase water absorption and Metamucil ]were handy for him to get things under control.
Dehydration is a risk so must keep drinking water even though it comes through.
I woke up just a half hour ago knowing that this cancer will be gone and I will be recovered from surgery in 9 months. This trip and your help have given me such clarity. My friend invites us every year for Thanksgiving but we always have our small family get together. I will come here this year and bring our family. I realized how spiritual this house is and I have obtained a breakthrough I never thought possible because it wasn't logical. I know you will be fine too. I love you bro and thanks so much for your support. I couldn't have done this without Tom. Everything on my list is going to come to fruition and I will try to go to the O'Flaherty reunion this August instead of next year as my first item. I miss them so much.
I started thinking about my son, Andrew. I feel so bad our relationship has always been strained and I didn't know why. Now I do, but why is not important. When he woke up, we chatted and made sense of our relationship and we have never been closer.
When he was little until 2000 I travelled all the time and only saw him on weekends. I was consulting. When I got home I was beat and had laundry and house maintenance. He had problems in school and I couldn't help. I got frustrated with our lives, finances, and jobs I hated but took to keep the lights on.
Woke up with no pain this morning. Thanks so much. It was cathartic to unload with my cousin Tom, last night and I feel I am already going to be in remission when I get the Pet Scan next month. I feel such a sense of peace and have shared it with my family. Andrew is so happy.
I woke up just a half hour ago knowing that this cancer will be gone and I will be recovered from surgery in 9 months. This trip and your help have given me such clarity. My friend invites us every year for Thanksgiving but we always have our small family get together. I will come here this year and bring Tom's family. I realized how spiritual this house is and I have obtained a breakthrough I never thought possible because it wasn't logical. I know Tom will be fine too. Everything on my list is going to come to fruition and I will try to go to the O'Flaherty reunion this August instead of next year as my first item. I miss them so much.
I had an epiphany last night and no longer feel the need to blog about my cancer trip. I will be cured in 9 months so I can work on my bucket list. The first item on the list was to go to the O'Flaherty family reunion. I was thinking it would be next year when I wrote it, but I love that family so much and Marianne O'Flaherty Niblock has been so supportive. I know I will be cured in 9 months. Because I have so many things left to do. Next year the Tour de France. Thank you Kate Bennett for your strength and advice. My pain is gone this morning. Joyce Roberts-Stein, thank you for your advice, but I will go with a Indiana pouch because I don't want to spend 9 months training a rebuilt bladder, it's not that important to me.
From Kate Bennett:Hebrews 11:3
7/24
So far the plan is working in Brooklyn and Max are sleeping with me in the family room.
I believe that the pain in my hip is not cancer but 30 years of sitting at a terminal. Today as a travel day, all I did was sit. I will watch my heroes battle it out on the Peyresourde while I hit the treadmill first thing. If that works, I don't need pain killers for anything else, but the hip has been an 8/10 on the pain scale at times, notably last Wednesday when I was doubled over.
I think I know how to beat the pain and lack of sleep now. I will divide the max Tylenol into round the clock doses. 6 doses 500mg each. Not allow it to wear off over night. Sleep sitting up on couch. Takes an engineer. Got more sleep than I have in the last 3 months. Will try again tonight to see if my theory works.
7/25
I have read that in recent past times before industrialization that peoples' natural sleep patterns were different. People took a small sleep for a few hours, the got up for a couple hours to prep for the next day, bank or feed the fire in the stove or fireplace, reflect, or read. Then they would go back to their longer sleep.
I am falling into that pattern in last two nights, and it is very refreshing, although I am dead tired just before going to sleep the first half.
Well so much for engineering yourself into taking too much Tylenol in 24 hours. I texted my pain management Doc and he actually said that I should only be taking 2,000 mg and no more and I've been taking three and sometimes a little more. Monday I will go in and get a hip pain shot under sedation that will last 3 months and block the pain in the hip. All the traction did was give me a sore knee.
Finally got a nap and hip starting to feel a bit better.
Meeting with Dr Vogelzang
I spent more time than ever with Dr V due to CT he got from Mayo.I am getting a copy. It was like drinking from a fire hose as he talked through it, but here is picture he drew. A lot of what he said didn't make sense and he out and out said he doesn't address coordination with other doctors or side effects. Well that just made my decision to go to AZ.
7/26
Things are happening so fast, its hard to get time for the past. My current onco is only reachable by third party unless we are in a face to face meeting. And his admin is the only channel and she is only reachable by email or by having the front desk leave a message to call me back.
Anyway, after my meeting today with Dr V and taking the chemo treatments, Andrew picked me up and we met Lisa and Ellie at an indoor play place for a couple hours then took Ellie to her swim lesson.
The oncologist from AZ calls and leaves a message with his CELL PHONE NUMBER and has good news.
I call him back and a clinical trial is opening the end of August that just changed its eligibility and I am now eligible. It targets mutated FGFR3 genes, which I have plenty of. The study is by BioClin, B701-421, aka Fierce-21. I have to read it and find out if there is a placebo group i can fall into. I am not interested in that.
Disclaimer: So my decision to not write in my blog was because it seemed like dwelling on the past and not looking forward may have been impetuous. However; the original idea was to have one central place for people to go to get an update instead of me repeating my status individually. I have a ton of material from the last two weeks, but for two male friends to whom I relayed all the gory details, it was a bit much, given that I was admitted to the hospital for low hemoglobin due to a 4 week round of morphine. Probably way too much info for most of you. I could just give the highlights. Anyway, I'd like to hear from those who read it to see if you want me to continue. Once the Tour is over I will have more time.
The other half of the question - summary or gory details? Not having gotten responses I'll give you only the summary, and if ita not enough, change the channel or fast forward or private IM if you need specific advice.
7/26
I haven't made the latest update, but I haven't slept all night yet and have several pages I have not published as i have been copying content from IMs, FB posts, etc so I wouldn't have to try to recall it all, but some of it is out of order. We are all adults, although someday I hope my grandkids read it. I will try to describe the nasty parts using clinical terms. Rather than how I described it to my male friends. This time unlike others, because there is so much detail and I need to see it on a bigger screen to get it in the right order, I won't publish till its ready, although Suzanne Wiener, has edit rights, so she could take a sneak peek.
I do think this entry is important because some people made mistakes, as usual, that put me in the hospital, that others should know to look for.
I also am getting chemo today and will spend 4 hours doing nothing, although, I expect I will crash by then. Let's go back to where we left off at the prior blog entry.
Post 7/12 realizations
Because so many things were happening at around the same time, I never knew which side effects were to blame on which treatments. Turns out pretty much all the new ones are the fault of radiation, which I concluded after much reflection, revisitation of the timeline and a final discussion with my cousin Tom. There were a lot of conversations over these 2 weeks, esp between my family and I, that I will leave out because they were based on incorrect conclusions. Dr V claimed that both radiation and chemo were to blame, although I seriously doubt he knows based on other statements he made in the conversation.
7/13
The lymphedema therapist recommended that I exercise as par of my therapy. I was able to get on our stationary bike for two days, but by the third day, my pain was so bad that even with extra padding, I couldn't sit on this fairly wide seat for only 2 minutes.
I was having a lot of trouble with my system that have progressed from Tuesday to the point today. My system was bothering me by now and it was very intense and painful.
I was to fly the next Monday to AZ for second opinion at Cancer treatment center of America in Goodyear, AZ. It was the only free week I had with no doctor appointments, except for a lymphedema therapy session on Monday, as I had left Wynn on disability in May.
With my system acting up, I didn't know how I would be able to do the flight. I called Lisa and Rabbi to ask them and they suggestion something to take before the flight, but didn't know how long it would last. The pain management doctor had said that I might have some after effects from the morphine I took during radiation, just to be able to withstand the pain of lying on that hard scanner with my broken hip bone. The prescription said 15 mg every four hours as needed and I took that plus 3 Tylenol every 4 hours and it barely took the edge off. After radiation was done, I wanted to get off the morphine since I knew it could lead to problems, but Kunal, the pain doctor, said to take it slow getting of and just take a half dose of medicine a day to keep things in order. Little did I know until later that was very understated advice and I was already severely affected.
I had so much pain around my midsection already from the broken hip bone, cancer in the lymph node, sore back, messed up gait from using a cane, that any new pain was unnoticeable. Kunal never physically examined me or he might have known.
7/13
I never got the new medicine, because I thought it would conflict with what Kunal had me take.
7/14-15
The weekend was busy with packing, laundry, going over schedules, booking transportation, TSA precheck, and wheelchairs. My leg would be wrapped in the lymphedema wraps and there was no way I would be able to get through the airport walking, plus my hip was killing me.
7/16
I am supposed to have a lymphedema appointment 2-3 times a week, but since I was going to be gone, I booked them for Monday and Friday. I went Monday and fortunately got the therapist who did my first analysis.
I had messed up the video recording of the wrapping process I had done the week before and wanted a fresh video. Jen, the therapist did a much easier process and explained every step, while I pointed out the parts of the leg being wrapped. Once the first layer is on it is difficult to tell where the knee is.
Ended up with a great video that I would be able to follow easier. I got home and 2 hours later it was time to go for the airport.
I make it to the airport, check in at curbside, and get the wheelchair, and head to the gate
The flight was uneventful but took forever it seemed to board since I got on first.
I was staying with our long time friend, Lucille Hunt and her dad Mike Monte, who both picked meup at the airport.
7/17
I wasn't feeling well before I got there the whole week before, blaming it on weaning off the morphine too fast. The next day we took the cancer center tour and they took blood work and I signed up for future treatment with finance. I met with the Patient Advocate, the Cancer fighter ambassador program, and nurse navigation orientation , Due to some rawness of rashes, I asked if I could get an appt with their wound care dept. By the end of the day I had an appt first thing Thurs.
7/18
I could have gotten wound care this morning, except I have to have met with the oncologist first, so I have to wait till Friday, as the oncologist meeting was later in the day Thursday. I talk to the chaplain about an advanced directive which we had already submitted that was good for both NV and AZ. Got more vital signs taken. Met with the urologist for an hour who actually did an exam and said I also had some lymphedema in the left leg. Oh great. However; there wasn't much he could do that the Vegas urologist had or intended to do, which was replace the nephrostomy tube every 3 months till the cancer is cured.
They tell me I need a transfusion as my hemoglobin was low at 7.2, but I didn't think they meant right away.Get the schedule for the next day's meetings with the dietician, naturopath, and oncologist. By the end of the day I had an appt first thing Friday before we leave. We meet with our nurse navigator just before we leave. I was pretty far out of it by our meeting with the oncologist and was having trouble following some of the conversation. I did get that he wanted me to finish the current round of chemo, get a PET CT scan, then consider a clinical trial involving the FGFR3 gene with them by the beginning of Sept.
7/19
I get a call from CTCA that they can't do the wound care till 3:30. I can't wait that long, since our flight is at 5. I am really fading and I call my cancer center in Vegas. When they call back, I fall apart, but got over that my hemoglobin was in the tank. They say to get directly to the hospital. My friend donated a kidney to her uncle at Mayo and her older extended family members are all frequent flyers there. She get us into emergency evaluation by calling ahead as soon as we walk in the door. A quick round of vitals and I am whisked to an ER exam room. Then a mob of docs show up and I'm incoherent. Can't give straight consistent answers, didn't know if I had diarrhea, got dates and days all mixed up, didn't know if I was constipated. Inside of 2 hours, they have a room on the 7th floor ready. I can't have anything but clear liquids for a sigmoidoscopy in the morning.
I am back in a hospital bed. Not too serious but side effects got to me. But wanted to pass on what I observed about foreign raised doctors. Lisa agreed so don't think its a bias.
They are very linear. They only know one way to ask a question, so if they don't get the answer they want they repeat the same fucking question, plus they only know one specific meaning for a word like diarrhea. If I call it that, I am including all variants.. They seem to only know that its mostly water .although we never figured out then what each other meant. Part of it is because they don/t have depth in reading different uses of the language in novels, etc. Kind of like Trump.
Down in the ER, Indian/Arab/Pakistani docs were asking what color my blood was, and I said Indian Red. I wasn't thinking because there was a reddish brown Crayola crayon that was named that way when I was a kid. I just realized that name was probably banned 50 yrs ago as being offensive and these guys are in their 30s. I didn't realize it till I was lying in bed 6 hours later.
Btw Mayo Hospital is amazing, level of care is miles above anything in Vegas.
7/20
Time for prep for the sigmoidoscopy.
The sigmoidoscopy folks finally give their ok to continue. They wheel me down and knock me out. Finally get back to room and get something to eat as I was really out of my skull with low hemoglobin and hunger. Started making lists and watching the TdF.
7/21
They do a CT with contrast, and the bed hurts my hip as much as it did during radiation. There is not much to do the rest of the day, so I watch youTube channels and make lists of questions for upcoming Doctor visits.
That night, I had a lot if time to myself so I made my bucket list and sent it to my cousin Tom Z who is going through a second round of bowel cancer, so we consult each other a lot: I make up my bucket list for fun:
[ ] Go to an O'Flaherty family reunion - turns out this year, I may be just going by Skype. Checked with onco on 7.26 and with upcoming chemos prior to the trip didn't think it would be a good idea.
[ ] Go see George Sublette
[ ] Take Ellie to north NV to see caverns
[ ] Go offroad in Jeep to Gold Butte
[ ] Open a CTCA in Vegas
[ ] Build the UNLV medical school
[ ] Seeing Lisa get an ER Fellowship
[ ] Make wine with Lisa
[ ] Learn long range shooting
[ ] Get CCW, M&P Shield 2.0 and Kahr CW9 - wife even wants one
[ ] Build body to 2014 strength
[ ] Learn differential equations
[ ] Go to Iceland, Greece and Israel with Mikki (Lu probably wants to come too) would love to bike the length of Israel with the IDF wounded warriors
[ ] Watch Ellie do the breaststroke like her mom used to - looked like a baby seal, barely broke the surface
[ ] Teach Ellie woodworking
[ ] Build a personal home brewery, wood workshop, bicycle maintenance shop, and set up trains at home or in a small industrial building
[ ] Go fishing
[ ] Train max to hunt ducks snd hunt in Overland Wash
[ ] See Lisa happy
[ ] Watch Andrew be successful
[ ] Watch Andrew fall in love - didn't realize that would start to happen the day I got back
[ ] Go turkey and boar hunting with Chris Ideker in Utah
[ ] Go see TdF and ride up the Peyrizord
[ ] Go back to Valley of Fire - will have to wait till Oct when its not in the 100s
[ ] Ride Red Rock Loop with Jeff Freilach
[ ] Hang out with cousins Ronnie and Clair and Tom Z
[ ] Visit family in Galway and Germany
[ ] Ride with Lance
[ ] Visit Zion and Yellowstone National Parks
[ ] Ride a bike thru Tucsons Saquaro Natl Park
[ ] Ride the whole River Mountain Look with Eric Dimlanta and./or Mauricio Prado
[ ] Ride TOSRV when I am 76
[ ] Ride the Pacific Coast by bike
[ ] Ride the US northern route by bike from West to East
[ ] Ride a segment of RAGBRAI
[ ] Teach Ellie to ride a bike
[ ] Get Ellie to learn horseback riding starting at 5 or 6
[ ] Ride up Pecos to June Bug Mine Road to Gass Peak on the gravel - going to have to wait since they just tore out the interchange while I was gone
[ ] Get professional bike fits done
Over the next few nights added a couple more to it. Obviously there's no order to this as some can't be done for several years, which is the idea. Feet have been running hot and cold every few hours.
7/22
Up all night, 2 am moved to recliner which most rooms don't have. Thought ahead and put the pad from the bed on it. Got some sleep eventually.
The food w'as off the hook with a mushroom gravy on the chicken that was off the hook. Docs came by and gave updates. Rectum had been burned by the radiation, so it had no control, morphine backed it up increasing pressure. The nurse had provided a cream for the rashes that was working well and easing the hemorrhoids - the cream is Medline Remedy Phytoplex Protectant Z Guard Paste.
7/23
Same kind of morning. Got released and had the nurse print all the hemoglobin reports and at least it went up to 7.7 from 7.2. Steak and liver were prescribed and by the time I had another blood test in a could days it got up to 8.6. I rolled out in early afternoon and took everything that wasn't nailed down including a clean bed pad.
7/24
Odd night. Wanted to go to bed but sheets were in the dryer and I was beat. Went to bathroom and sat on couch waiting for Mikki to make the the sheets. I have a lymphedema wrap on my right leg so it is like a cast and makes getting out of bed at night impossible.
Dead asleep at 11 on the couch. Woken up at 12 to come to bed but I was out of my mind groggy. Messaged with my cousin Tom till 2 when I got sleepy again. Went to bathroom again as per my usual 2 hour cycle. Took 1000 mg Tylenol for hip pain. I got up and sent an IM to my cousin Tom, while I had the though, not expecting a reply so late.
Tom and I covered several hours of family history, including when I missed my father's passing but at least saw him the week before and went back and me and my sister Marge stole his ashes from his wife so we could bury him with our Mom. We covered a lot of family history and it was like a veil removed as I made more connections and remembered details I'd long forgotten. We talked about the amount of cancer in the family going back hundreds of years and all the hardships and terrors our ancestors faced. Especially both my parents . I have a family history blog to update with new stories.
We each talked about our lives and realized we both had also gone through hardships, but we made it this far.
We talked about where our journeys are leading. Mine us that:
CTCA wants me to search out potential trials targeting the FGFR3 gene and they will get me on any that look promising. If I beat it and get surgery I will go for an Indiana pouch -a rebuilt bladder on the inside you catheterize to empty thru a stoma.
No retraining to contract different muscles to operate a new bladder which takes 9 months and no external bag that gets in the way with a hole in your side that can introduce infection. I lready have that with this nephrostomy.
Toms bucket list response:
I love that list! My favorite is the teaching Ellie woodworking one. I think that's the key to (sort of) living forever. Every time I pick up my tools and do something handy I think of my grandfather who taught me how to use them. Those are the impressions that really stick to the heart and soul. Crying is okay. I do it when no one is around. This is scary as so I think we're entitled to have some emotions about it, to purge that out and get on with moving forward. Are you back in LV or still in Scottsdale? My Dad is fighting to get better. He's on oxygen and isn't able to talk a lot so I haven't talked to him on the phone yet. He tried calling me Sunday morning but my ringer was turned off on my phone so I missed it. Beyond frustrated that I missed his call over something that simple. Sometimes I miss the days when the phone just rang like it is supposed to and just pick it up to answer it. Simple. Anyway his lungs aren't exchanging CO2 properly and he's anemic (hemoglobin) so that's the focus right now to get him strong enough for surgery.
I have gotten so much clarity in this week getting away from the routine. I have never felt this determined thru this. I have also gotten so much closer to my family and dependent on them and they have stepped up like storm troopers.
We talked about 9/11, my cousin FDNY Chief Brian O'Flaherty and how his survival of that day inspired me to join an urban search and rescue team. Then we talked about my daughter Lisa's experience triaging and treating many of the Vegas 10/1 victims while working as a pediatric ER doc at Sunrise Hospital.
We hung up the thread but I still couldn't sleep and went outside.
The sky is dark and the moon has set. Jupiter looks like a beacon in the SW! My Dad was an amateur astronomer and would have loved this view. A shooting star. Cassiopeia is shining like the queen she is in the north east.
Stuff to live for.
I asked Tom if his tastes in food were affected by chemo and radiation, or if he had gotten any supertaste symtoms. I got so sensitive to salt that I can taste it in a bottle of Arrowhead. Might as well be seawater. I have to add lemon juice to it.
I cannot eat any fast food except the milk shakes. No soup. No bacon.
I know I will accomplsh my bucket list over many years deep in my soul. The light from Jupiter last night felt like God. And I am an atheist...or was till a few hours ago.
My cousin Tom Z asked me the next day how I was doing.
Since we had both been on chemo and had our bowels radiated, Tom offered that he had radiation burns for about 6 weeks after finishing his last zap. He took
Imodium to increase water absorption and Metamucil ]were handy for him to get things under control.
Dehydration is a risk so must keep drinking water even though it comes through.
I woke up just a half hour ago knowing that this cancer will be gone and I will be recovered from surgery in 9 months. This trip and your help have given me such clarity. My friend invites us every year for Thanksgiving but we always have our small family get together. I will come here this year and bring our family. I realized how spiritual this house is and I have obtained a breakthrough I never thought possible because it wasn't logical. I know you will be fine too. I love you bro and thanks so much for your support. I couldn't have done this without Tom. Everything on my list is going to come to fruition and I will try to go to the O'Flaherty reunion this August instead of next year as my first item. I miss them so much.
I started thinking about my son, Andrew. I feel so bad our relationship has always been strained and I didn't know why. Now I do, but why is not important. When he woke up, we chatted and made sense of our relationship and we have never been closer.
When he was little until 2000 I travelled all the time and only saw him on weekends. I was consulting. When I got home I was beat and had laundry and house maintenance. He had problems in school and I couldn't help. I got frustrated with our lives, finances, and jobs I hated but took to keep the lights on.
Woke up with no pain this morning. Thanks so much. It was cathartic to unload with my cousin Tom, last night and I feel I am already going to be in remission when I get the Pet Scan next month. I feel such a sense of peace and have shared it with my family. Andrew is so happy.
I woke up just a half hour ago knowing that this cancer will be gone and I will be recovered from surgery in 9 months. This trip and your help have given me such clarity. My friend invites us every year for Thanksgiving but we always have our small family get together. I will come here this year and bring Tom's family. I realized how spiritual this house is and I have obtained a breakthrough I never thought possible because it wasn't logical. I know Tom will be fine too. Everything on my list is going to come to fruition and I will try to go to the O'Flaherty reunion this August instead of next year as my first item. I miss them so much.
I had an epiphany last night and no longer feel the need to blog about my cancer trip. I will be cured in 9 months so I can work on my bucket list. The first item on the list was to go to the O'Flaherty family reunion. I was thinking it would be next year when I wrote it, but I love that family so much and Marianne O'Flaherty Niblock has been so supportive. I know I will be cured in 9 months. Because I have so many things left to do. Next year the Tour de France. Thank you Kate Bennett for your strength and advice. My pain is gone this morning. Joyce Roberts-Stein, thank you for your advice, but I will go with a Indiana pouch because I don't want to spend 9 months training a rebuilt bladder, it's not that important to me.
So far the plan is working in Brooklyn and Max are sleeping with me in the family room.
I believe that the pain in my hip is not cancer but 30 years of sitting at a terminal. Today as a travel day, all I did was sit. I will watch my heroes battle it out on the Peyresourde while I hit the treadmill first thing. If that works, I don't need pain killers for anything else, but the hip has been an 8/10 on the pain scale at times, notably last Wednesday when I was doubled over.
I think I know how to beat the pain and lack of sleep now. I will divide the max Tylenol into round the clock doses. 6 doses 500mg each. Not allow it to wear off over night. Sleep sitting up on couch. Takes an engineer. Got more sleep than I have in the last 3 months. Will try again tonight to see if my theory works.
7/25
I have read that in recent past times before industrialization that peoples' natural sleep patterns were different. People took a small sleep for a few hours, the got up for a couple hours to prep for the next day, bank or feed the fire in the stove or fireplace, reflect, or read. Then they would go back to their longer sleep.
I am falling into that pattern in last two nights, and it is very refreshing, although I am dead tired just before going to sleep the first half.
Well so much for engineering yourself into taking too much Tylenol in 24 hours. I texted my pain management Doc and he actually said that I should only be taking 2,000 mg and no more and I've been taking three and sometimes a little more. Monday I will go in and get a hip pain shot under sedation that will last 3 months and block the pain in the hip. All the traction did was give me a sore knee.
Finally got a nap and hip starting to feel a bit better.
7/25
I wish I could say that the pain is gone but I definitely think that the hip is not related to cancer right now I'm trying to rig up a traction to pull on the foot against a table leg 2 pull the hip down when I taking a double dose of Tylenol and it's not helping.
If this on the treadmill don't work I have a friend who has that inversion table and I may be giving him a call but the can't keep going.
Moved the noose up to the knee and just keeping cmonstant tension it's slowly starting to subside.
7/26I wish I could say that the pain is gone but I definitely think that the hip is not related to cancer right now I'm trying to rig up a traction to pull on the foot against a table leg 2 pull the hip down when I taking a double dose of Tylenol and it's not helping.
If this on the treadmill don't work I have a friend who has that inversion table and I may be giving him a call but the can't keep going.
Moved the noose up to the knee and just keeping cmonstant tension it's slowly starting to subside.
Meeting with Dr Vogelzang
I spent more time than ever with Dr V due to CT he got from Mayo.I am getting a copy. It was like drinking from a fire hose as he talked through it, but here is picture he drew. A lot of what he said didn't make sense and he out and out said he doesn't address coordination with other doctors or side effects. Well that just made my decision to go to AZ.
The yellow is where the cancer is. No amountof PT will help the hip, but
might help my back. The mass in yellow is leaning on the nerves that go to the hip, causing the pain, but also eliminating any
possibility of PT helping the hip.
Got lymphedema in left leg too. Tumor is leaning on all the
blood vessels and lymph node has cancer on right side causing the swelling. Hemoglobin
is up to 8.6
Per Mayo the main mass is near the right UV junction where cancer
started.
There are a large mass of lymph nodes that are growing into the bone
The mass is sitting on the blood vessels and lymph ducts blocking the and causing right leg
lymphedema
The large mass has destroyed bone and is growing deeply into the bone
There are many more spots in the liver than the one recently detected.
these can only be treated with
chemo per Dr V.
Tumor has not
grown.
Dr V's plan include restarting the Tecentriq since I didn't get
that much before we stopped. There are more small spots on liver. That can only be
treated with chemo, not radiation. Dr V says that both chemo and radiation contributed to same
side effects. I don't believe this.
Dr V says there is something persistent about this cancer that he kills off 99% and that 1%
runs amok and regroups somewhere else like a guerrilla army.
More chemo will likely make me bleed again.
The hip pain is radiated from nerves the tumor is sitting on
The fracture that was once detected and mentioned as being in the
acetabulum in a CT report,
was drawn by Dr V toward the center of the superior pubic ramus not
by the joint -
I don't think he knows where the fracture is.
Dr V stated that the last two chemo treatments are today and 8/3, with
a CT with contrast on 8/8 and office consult with Dr V on the 9th.
7/26
Things are happening so fast, its hard to get time for the past. My current onco is only reachable by third party unless we are in a face to face meeting. And his admin is the only channel and she is only reachable by email or by having the front desk leave a message to call me back.
Anyway, after my meeting today with Dr V and taking the chemo treatments, Andrew picked me up and we met Lisa and Ellie at an indoor play place for a couple hours then took Ellie to her swim lesson.
The oncologist from AZ calls and leaves a message with his CELL PHONE NUMBER and has good news.
I call him back and a clinical trial is opening the end of August that just changed its eligibility and I am now eligible. It targets mutated FGFR3 genes, which I have plenty of. The study is by BioClin, B701-421, aka Fierce-21. I have to read it and find out if there is a placebo group i can fall into. I am not interested in that.
