I am now over halfway through my radiation treatment. I am happy to report that I am no longer taking any opiod medication. Over the last week I have been able to come off of the morphine and oxy without issue. The excruciating pain I was in just a few weeks ago is now non-existent. This means the radiation is working and the tumor is likely shrinking.
I am having some fairly standard side effects from the radiation and chemo pills. Fatigue has set in and I am pretty much able to sleep on-will but it never feels like enough. Nausea has also decided to show up. During my six months of chemo I did not throw up once. Well during the past weeks I have thrown up at home, in multiple vehicles and at work. I apologize to the few poor souls that had to witness one of these events. I always have barf bags at the ready now. They compliment my extra supply of poop bags nicely.
I am going to be open and honest about my current experience. This week I have been hit with the Warhammer of Emotional Messiness. I'm going to go ahead and claim it as another side effect. Much like my sleep, I have been able to cry on-will. I have had depression issues in the past but that never really made me a blubbering mess. Through out my cancer journey I have remained relatively calm and stoic. This week I cried one day on the radiation table. I cried at a sad song. I cried when I had a bag leak. The best part of it all was when I met with a palliative care doctor on Monday. I thought I was just there to talk about pain management and to make sure I was doing okay coming off the medications. Instead I sat in a room with the doctor, a nurse and a chaplain for an hour discussing my entire journey. It was a group therapy of sorts and I was the main attraction. We talked about my support system, my end of life preferences, grieving the loss of my pre-cancer life and all the other fun stuff one finds themselves discussing with strangers on a Monday morning.
I know I use humor to deflect the seriousness of my situation and that will continue to serve as useful tool. Having the Warhammer of Emotional Messiness smash down on my rather large noggin has perhaps given me a new tool. From last spring until November I was focused on the step by step process to get rid of the cancer. When I was told in December that I still had cancer I had little time to process the news before the physical pain took over. Now that pain is gone and I guess it's time to deal with a different pain. Don't worry. I will laugh at myself every time I cry over (literal) spilled poop.
Thanks everyone for your continued support. I really appreciate the company I have had on my daily trips to Denver. I'll do my best not to throw up in your cars but if you put on some mournful country ballad I will cry in your cars.
Thursday, January 25, 2018
Sunday, January 14, 2018
Radiation Week 1
At lot has happened since my last update. The week of Christmas I continued to have severe pain and decided to make another trip down to Denver to see if they could help (12/29). I was put on a slow release morphine pill along with the Oxy and Tylenol I was already on. It seemed to help for a few days but the severe pain returned after New Years. On the first day of my radiation (1/8) they decided to up my morphine. I also started supplementing the pain medicine with some cannabis products and have felt a lot better over the last week. It's hard to say if it's the increased morphine, cannabis or the radiation but I am grateful to currently be feeling good. I am going to start working with a palliative care nurse to help with the pain management side of things and to help get off the pills as I get better.
The first week of radiation has been pretty easy. For the actual radiation I am giving a pager when I check in. When the pager goes off I go to a changing room where I put on a fashionable hospital gown or two. I then wait for the phone to ring and for the techs to summon me to the radiation room. Once in the room I climb onto the table and lie on my stomach into the mold that was created last month. The techs then make sure everything is lined up. They then leave the room and shoot me with radiation. The machine makes a lot of noise but I don't feel anything. The whole process takes about 15 minutes. So far I have not noticed any negative side effects from the radiation. I also take six chemo pills every radiation day.
Once a week I'll meet with both my radiation and medical oncologist. This week there was not much new to report from them. I also saw a urologist this week regarding my mutant ureter and will be undergoing a couple tests over the next couple weeks to see if the tumor is creating issues on that front. Finally I have started to make plans for a trip to the Mayo Clinic at the end of February. This will involve tests and appointments with several different doctors to discuss my upcoming surgery. I'm sure Minnesota in February will be wonderful.
I'll try to keep everyone updated as things move along. So far so good!
The first week of radiation has been pretty easy. For the actual radiation I am giving a pager when I check in. When the pager goes off I go to a changing room where I put on a fashionable hospital gown or two. I then wait for the phone to ring and for the techs to summon me to the radiation room. Once in the room I climb onto the table and lie on my stomach into the mold that was created last month. The techs then make sure everything is lined up. They then leave the room and shoot me with radiation. The machine makes a lot of noise but I don't feel anything. The whole process takes about 15 minutes. So far I have not noticed any negative side effects from the radiation. I also take six chemo pills every radiation day.
Once a week I'll meet with both my radiation and medical oncologist. This week there was not much new to report from them. I also saw a urologist this week regarding my mutant ureter and will be undergoing a couple tests over the next couple weeks to see if the tumor is creating issues on that front. Finally I have started to make plans for a trip to the Mayo Clinic at the end of February. This will involve tests and appointments with several different doctors to discuss my upcoming surgery. I'm sure Minnesota in February will be wonderful.
I'll try to keep everyone updated as things move along. So far so good!
Tuesday, January 9, 2018
Joni's Race Report
Below is the race report from my sister Joni's 100 mile run. She raised a ton on money for me and for the Colrectal Cancer Alliance:
I traveled down to Phoenix on Thursday night with Hoa and Laurie. We stayed at a hotel to get the best rest possible. I managed to get about 7 hours of sleep, which is a little on the low end for me. Likewise, I spent the previous week battling off some sort of sickness that left me with a stiff neck and back. So, I was a bit more nervous than usual before a race.
We arrived at Camel Back Ranch at 7:30am on Friday to set up and to cheer on Chavet, Lisa, and Melissa, who were finishing the first day. It was in the 40’s and chilly, but warmed up quickly once the sun came out. Araivapa staff and volunteers were in the middle of a hilarious dance party. We saw Chavet and Melissa come by. Chavet was more than 110 miles in and ended up with 2nd overall female in the 24-hour race. Melissa had far surpassed her goal and made it to 50 miles. Lisa finished 50 miles the day before and was getting in bonus miles.
Start time seemed to come fast. My strategy was to ease into the first several miles. I planned to use intervals of 5 minutes running to 1 minute walking for as long as I could. The course was a little more than a mile and circled several baseball fields – the spring training facility for the LA Dodgers and Chicago White Sox. It was mostly crushed gravel, with two short portions of pavement and asphalt. A large portion of the loop was shaded, which offered relief from the heat. There were two aid stations. One was stocked with food, water, soda, etc. The other with mainly just fluids. Most runners set up their own version of aid stations along the course. Melissa, Lisa, and Shannon (Lisa’s husband) were staying in an RV on the opposite side of the loop, so I was able to leave a few items on their table and stop for breaks as needed. I didn’t bring much of my own food. I’ve found in the past I tend to do just fine eating what the aid station has to offer.
I warmed up quickly and felt good. I started with my handheld water bottle. I made sure to eat every hour and drink every time I had a walk break. I began to experience my first lull around mile 17, but wasn’t worried at this is a common point for me to feel this way. When I passed mile 25, I slowed down and walked a loop while having a beer and food. The beer break put some pep in my step, and it was cooling down. The temperature had gotten up to the mid 70’s, but I managed to stay on top of hydrating and dumped water on my head every few loops to cool down. Soon after, I passed the 50K mark with my 3rd fastest time for that distance. I was hoping to finish 50 miles in about 12 hours.
After mile 35, the sun was setting, and I changed into warmer clothes. Also, it was time for dinner. They were serving tamales. Honestly, I was hesitant to eat them. I love tamales, but I was afraid they might upset my stomach. However, I was hungry, and I knew I needed substantial food. The next few laps I took it easy so I could digest. Runners were starting to thin out as the evening progressed - many of the multi-day runners like to sleep at night. I went into the race thinking I would go straight through the night. However, by this point, I settled on continuing until midnight, and then taking a short nap. I was feeling decent still but slowing down, and I knew a nap would help.
I reached mile 50 in a little over 12 hours. To celebrate, I took a break in the RV with Melissa. I had another beer, put my feet up, and did a little stretching. I reluctantly left the comfort of the RV and went out to get in a few easy laps before I napped. I joined another runner who was close to her 100-mile goal. We walked and talked, and I made it to 54 miles before I decided to stop.
At this point, Hoa and Laurie, who were signed up for the 24-hour race, were still going strong. Laurie was aiming for 100 miles, and Hoa wanted to do at least 60 miles. I sat down to eat, and then went to my tent for a nap. Before taking a nap, I changed into clean clothes and wiped myself down with baby wipes. My toes were very tender. I had a couple of blisters. They weren’t bothering me when I ran, so I left them alone, wiped off my feet and put on short compression socks.
The tent we rented was very large. We rented cots too, so we didn’t have to sleep on the ground. The tent was big enough that you could stand up in it, but because it was roomy it was cold. Even with several layers of clothes and a 20-degree mummy bag, I was freezing. But I was very tired, so I eventually drifted off to sleep. I didn’t sleep great and woke up intermittently because I felt cold and my hips were aching. At some point, Hoa came in the tent to lay down. She decided to call it a day at 77 miles, surpassing her goal. Finally, at 5am, I decided I couldn’t take much more, so I got up and started moving again.
There were more runners out in the morning, and it wasn’t long before the sky started to light up. The sunrise was gorgeous. I felt rested even with the little sleep I got. I managed pull off a handful of decently fast miles close to the 100K mark. However, it wasn’t long before the sun was out in full force, and my energy faded. Lisa and her husband Shannon so kindly brought me bacon, and the aid station was serving egg sandwiches. I stopped, put the bacon on my sandwich and began to eat. It tasted amazing. I couldn’t stop eating and gobbled the whole thing down in a couple minutes. I think this was my favorite race food of the whole weekend. I continued to walk loops slowly while digesting.
It was barely noon before I started to feel very hot. Temperatures were pushing the mid-70’s again. But today, the sun combined with tiredness felt much harsher. I was closing in on 75 miles, when I began to feel lightheaded and experience a bit of GI distress. The tamales were coming back to haunt me, and new food was just not sitting well. Likewise, my neck and shoulders had become very tight, at times sending tingles down into my right arm. I took a short break outside my tent, where Hoa and Laurie were resting - Laurie completed an amazing 90 miles in 24 hours. I laid down on the grass in a cool shady spot, but it was only a matter of time before Melissa found me. Like a good motivator, she convinced me to get up and keep going. At that point, all I really wanted was rest, but I knew even slow forward progress was quicker than no forward progress. Melissa walked with me to keep me going, while Hoa left to take Laurie to the airport. Before Hoa left, she gave me her cooling towel to use, which I kept damp and tied around my neck. It was very slow going, but Melissa and I continued moving through the heat of the day.
At around 3:30pm it began to cool down, and I was finally beginning to feel relief. By the time the sun set, I was closing in on only a half marathon to go. I was glad to only have 13 miles left, but also overwhelmed by the idea of having to walk a half marathon because I knew it would take at least a few hours. Somewhere around this time the tears began flowing. My body was fully protesting, and my mind was deliriously tired. Both Hoa and Melissa walked with me now. They talked and kept things positive. I cried my eyes out, but I kept moving.
I started to have troubles with rocks in my shoes. My feet had become incredibly swollen. Every little rock felt agonizing, and the blisters I discovered the night before were beginning to irritate me. We decided it was best to stop at the tent and take care of the blisters. Hoa bravely popped and bandaged my blisters for me, while I yelled cuss words and cried from the pain. Melissa tried to help me get my socks, shoes and gaiters back on. However, it had become too difficult to get my shoes on because of the swelling. We decided I should try wearing my Chacos and socks for the remaining miles. I have actually climbed a 14er in my Chacos and hiked several times in them. So, I felt good about this choice.
After my having my blisters popped and getting my Chacos on, we kept moving. Initially the blisters were more tender than before. I had lost focus on eating and drinking because my GI tract was increasingly more upset, and I began to get nauseous. I was at an all time low. It seemed like as soon as one agonizing symptom eased up another would take over. My blisters. My neck. My shoulders. Ringing in my ears. Tiredness. Dizziness. At one point, I began to see what I called “swirleys”. My body was revolting in every way it could, but I had only less than 10 miles to go.
It was getting late again, and I was doing all I could to finish. I managed to force down some candied ginger which seemed to help. Melissa stayed with me while Hoa went to pack up our stuff. I broke down again, as one of my blisters refilled and was stinging badly. With only 5 miles left, I was so close but felt so far. I was only managing a measly 3 mph at best. The anxiety of wanting to finish was overwhelming. Lisa and Shannon showed up to cheer me on. Lisa brought my “Running 4 Jason” sign, and wrote “You are our hero” on the back. Of course, I started bawling again when I saw it.
Finally, I managed to get my act together emotionally with two loops to go. I was starting to accept I was really going to accomplish my goal. Both Hoa and Melissa were with me again, and with one loop to go, I gave the middle finger to each rock, bush, curb, turn, that I had intimately gotten to know during my 96 loops. We came around the last turn and Melissa and Hoa encouraged me to run (more like shuffle) it in. They went ahead, and Lisa recorded a Facebook live video, so Matt could watch from home. I felt such a huge sense of relief once crossing the finish line. Jubilee presented me with my buckle and my finisher's mug. It took me 39:21:38 to finish. I finished 48th out of 85 in the 48-hour race.
Overall, I wouldn’t hesitate to say this was an amazing experience. There were some low points for sure, but there were a lot of high points as well. Late in the race, I definitely came to the realization it was a bit insane to make myself suffer in the name of my brother who is suffering. However, thinking of him, and everyone else who is fighting cancer, really kept me going. I am very fortunate to have good health. I am very fortunate for the ability and opportunity to achieve something very few people can. I am very fortunate for an amazing support system of family and friends, who have reached out to help my brother, and to help me reach my crazy goal.
Thank you to everyone who sent me messages of encouragement. I’m so grateful to have had cell phone service the whole time. Receiving messages from Matt, my friends and family during the race was so motivating. Thank you to Hoa and Melissa. I TRULY could not have made it without them pulling me through, taking care of me, and putting up with my crap. Thank you to Lisa, Shannon, Chavet, Laurie, Chad, and many other friends out on the course who offered me support and encouragement. The comradery and friendship runners display at races is truly the reason why I love running. Thank you to the Aravaipa staff and volunteers, who so enthusiastically took care of us and handled our every need. Also, thanks to everyone who donated to my fundraiser for Jason. With your help, I raised an additional $2,400! And as promised, today I donated $1,200 to the Colorectal Cancer Alliance.
Finally, I know the question some may be wondering is, would I do it again? To which I say, hell yes!
I traveled down to Phoenix on Thursday night with Hoa and Laurie. We stayed at a hotel to get the best rest possible. I managed to get about 7 hours of sleep, which is a little on the low end for me. Likewise, I spent the previous week battling off some sort of sickness that left me with a stiff neck and back. So, I was a bit more nervous than usual before a race.
We arrived at Camel Back Ranch at 7:30am on Friday to set up and to cheer on Chavet, Lisa, and Melissa, who were finishing the first day. It was in the 40’s and chilly, but warmed up quickly once the sun came out. Araivapa staff and volunteers were in the middle of a hilarious dance party. We saw Chavet and Melissa come by. Chavet was more than 110 miles in and ended up with 2nd overall female in the 24-hour race. Melissa had far surpassed her goal and made it to 50 miles. Lisa finished 50 miles the day before and was getting in bonus miles.
Start time seemed to come fast. My strategy was to ease into the first several miles. I planned to use intervals of 5 minutes running to 1 minute walking for as long as I could. The course was a little more than a mile and circled several baseball fields – the spring training facility for the LA Dodgers and Chicago White Sox. It was mostly crushed gravel, with two short portions of pavement and asphalt. A large portion of the loop was shaded, which offered relief from the heat. There were two aid stations. One was stocked with food, water, soda, etc. The other with mainly just fluids. Most runners set up their own version of aid stations along the course. Melissa, Lisa, and Shannon (Lisa’s husband) were staying in an RV on the opposite side of the loop, so I was able to leave a few items on their table and stop for breaks as needed. I didn’t bring much of my own food. I’ve found in the past I tend to do just fine eating what the aid station has to offer.
I warmed up quickly and felt good. I started with my handheld water bottle. I made sure to eat every hour and drink every time I had a walk break. I began to experience my first lull around mile 17, but wasn’t worried at this is a common point for me to feel this way. When I passed mile 25, I slowed down and walked a loop while having a beer and food. The beer break put some pep in my step, and it was cooling down. The temperature had gotten up to the mid 70’s, but I managed to stay on top of hydrating and dumped water on my head every few loops to cool down. Soon after, I passed the 50K mark with my 3rd fastest time for that distance. I was hoping to finish 50 miles in about 12 hours.
After mile 35, the sun was setting, and I changed into warmer clothes. Also, it was time for dinner. They were serving tamales. Honestly, I was hesitant to eat them. I love tamales, but I was afraid they might upset my stomach. However, I was hungry, and I knew I needed substantial food. The next few laps I took it easy so I could digest. Runners were starting to thin out as the evening progressed - many of the multi-day runners like to sleep at night. I went into the race thinking I would go straight through the night. However, by this point, I settled on continuing until midnight, and then taking a short nap. I was feeling decent still but slowing down, and I knew a nap would help.
I reached mile 50 in a little over 12 hours. To celebrate, I took a break in the RV with Melissa. I had another beer, put my feet up, and did a little stretching. I reluctantly left the comfort of the RV and went out to get in a few easy laps before I napped. I joined another runner who was close to her 100-mile goal. We walked and talked, and I made it to 54 miles before I decided to stop.
At this point, Hoa and Laurie, who were signed up for the 24-hour race, were still going strong. Laurie was aiming for 100 miles, and Hoa wanted to do at least 60 miles. I sat down to eat, and then went to my tent for a nap. Before taking a nap, I changed into clean clothes and wiped myself down with baby wipes. My toes were very tender. I had a couple of blisters. They weren’t bothering me when I ran, so I left them alone, wiped off my feet and put on short compression socks.
The tent we rented was very large. We rented cots too, so we didn’t have to sleep on the ground. The tent was big enough that you could stand up in it, but because it was roomy it was cold. Even with several layers of clothes and a 20-degree mummy bag, I was freezing. But I was very tired, so I eventually drifted off to sleep. I didn’t sleep great and woke up intermittently because I felt cold and my hips were aching. At some point, Hoa came in the tent to lay down. She decided to call it a day at 77 miles, surpassing her goal. Finally, at 5am, I decided I couldn’t take much more, so I got up and started moving again.
There were more runners out in the morning, and it wasn’t long before the sky started to light up. The sunrise was gorgeous. I felt rested even with the little sleep I got. I managed pull off a handful of decently fast miles close to the 100K mark. However, it wasn’t long before the sun was out in full force, and my energy faded. Lisa and her husband Shannon so kindly brought me bacon, and the aid station was serving egg sandwiches. I stopped, put the bacon on my sandwich and began to eat. It tasted amazing. I couldn’t stop eating and gobbled the whole thing down in a couple minutes. I think this was my favorite race food of the whole weekend. I continued to walk loops slowly while digesting.
It was barely noon before I started to feel very hot. Temperatures were pushing the mid-70’s again. But today, the sun combined with tiredness felt much harsher. I was closing in on 75 miles, when I began to feel lightheaded and experience a bit of GI distress. The tamales were coming back to haunt me, and new food was just not sitting well. Likewise, my neck and shoulders had become very tight, at times sending tingles down into my right arm. I took a short break outside my tent, where Hoa and Laurie were resting - Laurie completed an amazing 90 miles in 24 hours. I laid down on the grass in a cool shady spot, but it was only a matter of time before Melissa found me. Like a good motivator, she convinced me to get up and keep going. At that point, all I really wanted was rest, but I knew even slow forward progress was quicker than no forward progress. Melissa walked with me to keep me going, while Hoa left to take Laurie to the airport. Before Hoa left, she gave me her cooling towel to use, which I kept damp and tied around my neck. It was very slow going, but Melissa and I continued moving through the heat of the day.
At around 3:30pm it began to cool down, and I was finally beginning to feel relief. By the time the sun set, I was closing in on only a half marathon to go. I was glad to only have 13 miles left, but also overwhelmed by the idea of having to walk a half marathon because I knew it would take at least a few hours. Somewhere around this time the tears began flowing. My body was fully protesting, and my mind was deliriously tired. Both Hoa and Melissa walked with me now. They talked and kept things positive. I cried my eyes out, but I kept moving.
I started to have troubles with rocks in my shoes. My feet had become incredibly swollen. Every little rock felt agonizing, and the blisters I discovered the night before were beginning to irritate me. We decided it was best to stop at the tent and take care of the blisters. Hoa bravely popped and bandaged my blisters for me, while I yelled cuss words and cried from the pain. Melissa tried to help me get my socks, shoes and gaiters back on. However, it had become too difficult to get my shoes on because of the swelling. We decided I should try wearing my Chacos and socks for the remaining miles. I have actually climbed a 14er in my Chacos and hiked several times in them. So, I felt good about this choice.
After my having my blisters popped and getting my Chacos on, we kept moving. Initially the blisters were more tender than before. I had lost focus on eating and drinking because my GI tract was increasingly more upset, and I began to get nauseous. I was at an all time low. It seemed like as soon as one agonizing symptom eased up another would take over. My blisters. My neck. My shoulders. Ringing in my ears. Tiredness. Dizziness. At one point, I began to see what I called “swirleys”. My body was revolting in every way it could, but I had only less than 10 miles to go.
It was getting late again, and I was doing all I could to finish. I managed to force down some candied ginger which seemed to help. Melissa stayed with me while Hoa went to pack up our stuff. I broke down again, as one of my blisters refilled and was stinging badly. With only 5 miles left, I was so close but felt so far. I was only managing a measly 3 mph at best. The anxiety of wanting to finish was overwhelming. Lisa and Shannon showed up to cheer me on. Lisa brought my “Running 4 Jason” sign, and wrote “You are our hero” on the back. Of course, I started bawling again when I saw it.
Finally, I managed to get my act together emotionally with two loops to go. I was starting to accept I was really going to accomplish my goal. Both Hoa and Melissa were with me again, and with one loop to go, I gave the middle finger to each rock, bush, curb, turn, that I had intimately gotten to know during my 96 loops. We came around the last turn and Melissa and Hoa encouraged me to run (more like shuffle) it in. They went ahead, and Lisa recorded a Facebook live video, so Matt could watch from home. I felt such a huge sense of relief once crossing the finish line. Jubilee presented me with my buckle and my finisher's mug. It took me 39:21:38 to finish. I finished 48th out of 85 in the 48-hour race.
Overall, I wouldn’t hesitate to say this was an amazing experience. There were some low points for sure, but there were a lot of high points as well. Late in the race, I definitely came to the realization it was a bit insane to make myself suffer in the name of my brother who is suffering. However, thinking of him, and everyone else who is fighting cancer, really kept me going. I am very fortunate to have good health. I am very fortunate for the ability and opportunity to achieve something very few people can. I am very fortunate for an amazing support system of family and friends, who have reached out to help my brother, and to help me reach my crazy goal.
Thank you to everyone who sent me messages of encouragement. I’m so grateful to have had cell phone service the whole time. Receiving messages from Matt, my friends and family during the race was so motivating. Thank you to Hoa and Melissa. I TRULY could not have made it without them pulling me through, taking care of me, and putting up with my crap. Thank you to Lisa, Shannon, Chavet, Laurie, Chad, and many other friends out on the course who offered me support and encouragement. The comradery and friendship runners display at races is truly the reason why I love running. Thank you to the Aravaipa staff and volunteers, who so enthusiastically took care of us and handled our every need. Also, thanks to everyone who donated to my fundraiser for Jason. With your help, I raised an additional $2,400! And as promised, today I donated $1,200 to the Colorectal Cancer Alliance.
Finally, I know the question some may be wondering is, would I do it again? To which I say, hell yes!
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