This past year has been quite the adventure. Hospital stays, ER visits, surgeries, chemo, cancer pain, prostate exam (oh boy!), ultrasounds, CT scans, MRIs, a PET Scan and so much more! While all of that has been interesting the amazing part of the past year has been all the love, generosity, and kindness our family has received. I don't think I can possibly list off everyone that has helped but I certainly want to try to express my gratefulness.
First I have to thank my wonderful wife who has been by my side through everything. I wouldn't be able to go through this alone and she makes everyday worth it. Also at times while I've been in the hospital or recovering from chemo she has essentially been a single parent and taken on a lot of the load of our daily lives. I also am thankful for my children. They have been understanding and brave through it all. They have taken on a larger role with household chores. They have never complained when life has been interrupted by my adventures.
I want to thank my immediate family. My mom and dad have been open to helping out with appointments. They have assisted with meals and with finances. They spent some extra time doing activities with the kids. My sister Joni has been absolutely amazing. As most of you know, she started a fundraiser (Running for Jason). The fundraiser far surpassed it's goals and she has now set a new goal which includes her making some matching donations to the Colrectal Cancer Alliance. I also can't thank Joni without thanking her husband Matt. Both him and Joni have helped us with meals, finances, and have spent a lot of time with us. They ran 3 races with us this year and Joni has run many miles to help raise money for her fundraiser. In about a week Joni is running 100 miles in Arizona for the fundraiser. I also want to thanks my brother John and his family. All tough they live 1000s of miles away they have reached out with there support and love. John came out in October to hang out with me during a chemo treatment which I really appreciated since we see each other infrequently.
I have to thanks my 'other' immediate family; Carrie's parents, her brother Matt and his fiance Alaina. We moved into our new house back in January and had grand plans for landscaping but the whole cancer thing threw a wrinkle into those plans. The Jaspers family stepped up and did the vast majority of our backyard including sod, fence, and irrigation. They have helped with the kids so many times it's impossible to count. They have helped out financially and given us so many various gifts. It is also impossible to count the number of delicious meals Sherry has provided us. Matt and Alaina have also provided us many meals. I also am grateful for Golda's (aka Great-Grandma) generous support.
Thank you to my not-so-immediate-but-love-just-as-much-family who have helped us is many ways. Our uncles and aunts have been so supportive. Thank you so much Lucy, Joan, Tom, Carol, Smitty, and Janice. Thank you so much to my cousins Allison, Bonnie and Wendy who have offered support, prayers and given some very generous gifts to assist us this year.
Thanks to my coworkers who raised a generous amount of money through a bake sale. Thanks to my boss and employer for being so flexible with my situation. Thanks to all the friends of family, friends of friends, and complete strangers who contributed to Joni's fundraiser and helped in other ways. It truly blows my mind that people I have never met have helped out in amazing ways.
Finally, I want to give an extra special thanks to some good friends who very recently provided us with quite an adventure. Last Sunday we were sent on a scavenger hunt across town. One of our friends had advised us to keep the day open but had not stated why. We were surprised to receive a text from a different friend at 2pm with a rhyming clue. The first stop was Odell Brewing where Carrie's brother works. Their we met up with him, received a very nice gift bag, took a picture, and then received another clue. The next stop required Carrie and I to pose American Gothic style in front of our old house. The next clue sent us to a car wash to was giving out free car washes. Then we were sent to a playground where we used to regularly meet up with friends when our kids were younger. Our kids had to pose on top of a wooly mammoth before we could get our next clue. We were then sent to the kids middle school. Each rhyming text came from a different friend.
After that we were sent to the Summit which is basically a massive bar/restaurant/arcade/bowling/laser tag place. There we discovered our friends waiting for us. We were treated to food, drinks, games and bowling. In addition we were given a literal sack full of gifts. The amounts of gifts we received was ridiculous but in a good way. We were overwhelmed by the generosity of our friends. I know I'll never forget that day and I'm pretty sure it will stick with the kids as well.
So to close this out, I know I can't repay the kindness that has been shown this year but I will certainly do my best to pay it forward. It is wonderful to have such a wide support system. Thank you everyone. Sorry if I missed anyone but there have been so many that have helped.
Merry Christmas and Happy New Year!
Sunday, December 24, 2017
Saturday, December 23, 2017
The New Plan of Attack
After a long few weeks we now have a plan of attack in place to get rid of this cancer once and for all.
On Tuesday (12/19) morning, Carrie and I drove down to the University of Colorado Hospital. We first met with a medical oncologist in the Colrectal Cancer Clinic. The doctor specializes in the cases of people under 50 years old. He discussed the tumor board's recommendations for radiation treatment. The radiation will be every weekday for 5 weeks. I will be starting on January 8th. In addition to the radiation I will be taking an oral form of chemotherapy (Capecitabine). The chemo will have similar side affects as the FOLFOX treatment I was on for 6 months but will be a lesser dosage. The hope is that it will slow any cancer growth along with the radiation. He also presented a clinical trial of immunotherapy that I would qualify for. I guess I'm a bit of a colon cancer unicorn given my age and the fact that I haven't taken a certain cancer drug during my treatment. This clinical trial would be an option if this round of treatment doesn't work but generally would be a last resort if other options fail. The doctor reiterated that my treatment is very much still working towards a curative goal and there is no reason to think we can't beat this.
After that appointment we headed to the radiation oncology clinic. Here we went into more detail about the radiation portion of my treatment. As I mentioned, treatment will be every weekday for 5 weeks. The radiation treatment will only last for less than 10 minutes. We were advised by the doctor that we could do the treatment in Fort Collins but she would prefer to do it at their clinic in Denver. Carrie and I both thought it best to do the treatment in Denver since we want to have the best people we can working on me. The side affects of the treatment will be cumulative so the first couple weeks I may feel good but will start to feel very fatigued towards the end. They were then able to get me in for my radiation simulation. This involved me lying stomach down on CT scan table. Underneath me they had placed a plastic bag filled with some sort of special polymer. They taped the bad around my torso and pelvis areas and I was told to lie as still as possible while the polymer hardened. This bag with the polymer inside will serve as a mold/cast while I get radiation. I was then given a CT scan so they could determine where all my internal organs were sitting. Finally I was given four time tatoos on my sides and two on my spinal area. These are hardly even visible but will help the doctors get the radiation lined up just right. After about 30 minutes of lying still I was able to get up. My back was killing me.
We also learned that after radiation they will want to do a surgery to remove the portion of colon which has the current mass on it. They would also like more radiation to be applied at this time. However, no ORs in Colorado are equipped to do this so I will likely be traveling to either the Mayo Clinic in MN or Sloan-Kettering in NY for the surgery.
Carrie and I both felt really comforable with the doctors and believe their plan is the strongest plan of attack at the moment. It will be a long 5 weeks of treatment but will be worth it in the end.
On Tuesday (12/19) morning, Carrie and I drove down to the University of Colorado Hospital. We first met with a medical oncologist in the Colrectal Cancer Clinic. The doctor specializes in the cases of people under 50 years old. He discussed the tumor board's recommendations for radiation treatment. The radiation will be every weekday for 5 weeks. I will be starting on January 8th. In addition to the radiation I will be taking an oral form of chemotherapy (Capecitabine). The chemo will have similar side affects as the FOLFOX treatment I was on for 6 months but will be a lesser dosage. The hope is that it will slow any cancer growth along with the radiation. He also presented a clinical trial of immunotherapy that I would qualify for. I guess I'm a bit of a colon cancer unicorn given my age and the fact that I haven't taken a certain cancer drug during my treatment. This clinical trial would be an option if this round of treatment doesn't work but generally would be a last resort if other options fail. The doctor reiterated that my treatment is very much still working towards a curative goal and there is no reason to think we can't beat this.
After that appointment we headed to the radiation oncology clinic. Here we went into more detail about the radiation portion of my treatment. As I mentioned, treatment will be every weekday for 5 weeks. The radiation treatment will only last for less than 10 minutes. We were advised by the doctor that we could do the treatment in Fort Collins but she would prefer to do it at their clinic in Denver. Carrie and I both thought it best to do the treatment in Denver since we want to have the best people we can working on me. The side affects of the treatment will be cumulative so the first couple weeks I may feel good but will start to feel very fatigued towards the end. They were then able to get me in for my radiation simulation. This involved me lying stomach down on CT scan table. Underneath me they had placed a plastic bag filled with some sort of special polymer. They taped the bad around my torso and pelvis areas and I was told to lie as still as possible while the polymer hardened. This bag with the polymer inside will serve as a mold/cast while I get radiation. I was then given a CT scan so they could determine where all my internal organs were sitting. Finally I was given four time tatoos on my sides and two on my spinal area. These are hardly even visible but will help the doctors get the radiation lined up just right. After about 30 minutes of lying still I was able to get up. My back was killing me.
We also learned that after radiation they will want to do a surgery to remove the portion of colon which has the current mass on it. They would also like more radiation to be applied at this time. However, no ORs in Colorado are equipped to do this so I will likely be traveling to either the Mayo Clinic in MN or Sloan-Kettering in NY for the surgery.
Carrie and I both felt really comforable with the doctors and believe their plan is the strongest plan of attack at the moment. It will be a long 5 weeks of treatment but will be worth it in the end.
Friday, December 15, 2017
The Story of Mutant Ureter Man
WARNING: THIS POST MAY CONTAIN POOP, TESTICLES AND SMALL TUBES GOING UP URETHAS. ENJOY.
Well the last week has been just as exciting as the week before. Is it because we might finally get wintery weather in Colorado? No. Is it because it's 10 days until Christmas? No. Is it because we are seeing the new Star Wars tomorrow? No. Is it because I'm a mutant with double ureters attached to one of my kidneys? YES!!!!!!!!!!!!
Last I updated the blog I was worried about a possible liver tumor. An MRI revealed that to be a false positive and that was great news. Last week I also developed some new pain in addition to the back and abdominal pains. Those of you who have read through the blog may know that way back in March before I had my tumor removed I was having testicular pain. I had an ultrasound on my parts and nothing was shown. Well the same pain returned to that area and I got another ultrasound. The good news is there was once again nothing to see there. The bad news is there were no answers for the pain. Cut to this Monday (12/11) and the pain in that area was getting more severe. I called the Cancer Clinic and they had no ideas so I called my primary care doctor. He did the standard exam and seemed pretty confident I had an infection so I was prescribed antibiotics. I had also started taking some decently strong pain pills that were masking a lot of my issues.
Tuesday afternoon (12/12) while working I started to feel fairly severe abdominal pain. I left work early and eventually had some wonderful liquidy output that relived the pressure. Later that evening the pain returned and I hardly slept. By morning I felt a little better but not great. I was feeling suspicious that nasty things (well nastier than what was already going on) were occurring inside of me. Now Wednesday (12/13) was the day I was supposed to go the University of Colorado Hospital to consult with the colrectal cancer clinic. After we dropped the kids off at school Carrie and I began the drive to Denver. I just wasn't feeling right so I called both my cancer office and the Denver clinic. They both agreed that I should probably get checked out at the ER. We chose to continue to the ER at UCH just in case I needed any sort of surgery then a surgical oncologist would be available.
In the ER they took blood and I gave a urine sample. They did about 7 different tests on me all of which came back entirely normal. My liver and kidney appeared to be functioning normally and my immune system had recovered since my last chemo session. I was given some oxy to help with my pain. I had to drink some imaging fluid mixed with cranberry juice over an hour and a half. They then carted me off to get a CT scan. After that was over we waited and waited for someone to give us results. Then an orderly came to the room and informed us they wanted me to do another CT scan in a different position. After that we waited for at least an hour before a doctor finally spoke with us. He said it was likely the cancerous mass causing pain but there wasn't much we could do but move forward with my chemo treatment plan which would hopefully shrink the mass. This was somewhat disappointing since I really wanted to know what exactly was causing my various pains. He told us I would soon be discharged and went on his way.
Five minutes later he returned to inform us that the plot had thickened. The radiologist contacted him to inform him that I am a mutant with double ureters coming out of my left kidney. The ureter is the tube that drains the kidney into the bladder. Most people have one tube for each kidney. About one percent of people have a kidney with two ureters. I am finally part of the one percent! The fact that I have double ureters is not an issue. The issue is that one of the ureters is being pressed on by my tumor. This is causing my kidney to back up a little. This is what is likely leading to my various pains.
I was then visited by a urologist who discussed some options. The first option was to put a stent in the ureter. The stent goes in through your uretha and sounds like a really good time. The stent itself can cause discomfort so there is no guarantee the pain would go but the ureter would stay open. The second option is to get tube through my back to the kidney that could help drain it. This would be neat because then I could have poop coming out my front and pee coming out my back. The final option is to manage it with pain and hope the cancer treatment resolves the issue. For now I am going with option three as the other options are generally reserved for dire emergencies or entirely unmanageable pain.
At this point I was discharged and given an oxycodone prescription. On the way home I spoke with my contact at the colrectal cancer clinic. The team of various doctors had still met to discuss my case despite my absence. Their final recommendations was radiation treatment followed by surgery followed by some possible rounds of chemo. I don't have a lot of details about the plan yet but today I spoke with my local oncologists and she is on board. On Tuesday I will go back to Denver and meet with a medical oncologist, a radiation oncologist and hopefully a urologist who regularly works with the clinic. At that time I will hopefully understand the radiation treatment a bit better and will know a schedule.
In the meantime I am trying to figure out the pain meds. Since they are serious opiates I am trying not to go crazy but they help me especially at night. I don't like the idea of taking these pills for weeks and weeks. I'm lucky to live in a legal weed state so I may explore that option and run it by the doctors next week. Until then me and my ureters will enjoy a relaxing weekend.
Well the last week has been just as exciting as the week before. Is it because we might finally get wintery weather in Colorado? No. Is it because it's 10 days until Christmas? No. Is it because we are seeing the new Star Wars tomorrow? No. Is it because I'm a mutant with double ureters attached to one of my kidneys? YES!!!!!!!!!!!!
Last I updated the blog I was worried about a possible liver tumor. An MRI revealed that to be a false positive and that was great news. Last week I also developed some new pain in addition to the back and abdominal pains. Those of you who have read through the blog may know that way back in March before I had my tumor removed I was having testicular pain. I had an ultrasound on my parts and nothing was shown. Well the same pain returned to that area and I got another ultrasound. The good news is there was once again nothing to see there. The bad news is there were no answers for the pain. Cut to this Monday (12/11) and the pain in that area was getting more severe. I called the Cancer Clinic and they had no ideas so I called my primary care doctor. He did the standard exam and seemed pretty confident I had an infection so I was prescribed antibiotics. I had also started taking some decently strong pain pills that were masking a lot of my issues.
Tuesday afternoon (12/12) while working I started to feel fairly severe abdominal pain. I left work early and eventually had some wonderful liquidy output that relived the pressure. Later that evening the pain returned and I hardly slept. By morning I felt a little better but not great. I was feeling suspicious that nasty things (well nastier than what was already going on) were occurring inside of me. Now Wednesday (12/13) was the day I was supposed to go the University of Colorado Hospital to consult with the colrectal cancer clinic. After we dropped the kids off at school Carrie and I began the drive to Denver. I just wasn't feeling right so I called both my cancer office and the Denver clinic. They both agreed that I should probably get checked out at the ER. We chose to continue to the ER at UCH just in case I needed any sort of surgery then a surgical oncologist would be available.
In the ER they took blood and I gave a urine sample. They did about 7 different tests on me all of which came back entirely normal. My liver and kidney appeared to be functioning normally and my immune system had recovered since my last chemo session. I was given some oxy to help with my pain. I had to drink some imaging fluid mixed with cranberry juice over an hour and a half. They then carted me off to get a CT scan. After that was over we waited and waited for someone to give us results. Then an orderly came to the room and informed us they wanted me to do another CT scan in a different position. After that we waited for at least an hour before a doctor finally spoke with us. He said it was likely the cancerous mass causing pain but there wasn't much we could do but move forward with my chemo treatment plan which would hopefully shrink the mass. This was somewhat disappointing since I really wanted to know what exactly was causing my various pains. He told us I would soon be discharged and went on his way.
Five minutes later he returned to inform us that the plot had thickened. The radiologist contacted him to inform him that I am a mutant with double ureters coming out of my left kidney. The ureter is the tube that drains the kidney into the bladder. Most people have one tube for each kidney. About one percent of people have a kidney with two ureters. I am finally part of the one percent! The fact that I have double ureters is not an issue. The issue is that one of the ureters is being pressed on by my tumor. This is causing my kidney to back up a little. This is what is likely leading to my various pains.
I was then visited by a urologist who discussed some options. The first option was to put a stent in the ureter. The stent goes in through your uretha and sounds like a really good time. The stent itself can cause discomfort so there is no guarantee the pain would go but the ureter would stay open. The second option is to get tube through my back to the kidney that could help drain it. This would be neat because then I could have poop coming out my front and pee coming out my back. The final option is to manage it with pain and hope the cancer treatment resolves the issue. For now I am going with option three as the other options are generally reserved for dire emergencies or entirely unmanageable pain.
At this point I was discharged and given an oxycodone prescription. On the way home I spoke with my contact at the colrectal cancer clinic. The team of various doctors had still met to discuss my case despite my absence. Their final recommendations was radiation treatment followed by surgery followed by some possible rounds of chemo. I don't have a lot of details about the plan yet but today I spoke with my local oncologists and she is on board. On Tuesday I will go back to Denver and meet with a medical oncologist, a radiation oncologist and hopefully a urologist who regularly works with the clinic. At that time I will hopefully understand the radiation treatment a bit better and will know a schedule.
In the meantime I am trying to figure out the pain meds. Since they are serious opiates I am trying not to go crazy but they help me especially at night. I don't like the idea of taking these pills for weeks and weeks. I'm lucky to live in a legal weed state so I may explore that option and run it by the doctors next week. Until then me and my ureters will enjoy a relaxing weekend.
Tuesday, December 5, 2017
The Adventure Continues
Many of you heard from me this past Friday with my update. I had a CT scan on Thursday (11/30) and when I met with my oncologists on Friday (12/1) she said the scan was showing something strange in my colon. She ordered a PET scan for me. Well it turns out my update last Friday was a little premature. What I failed to report in my update was that they also did some blood work to measure my CEA (carcinoembryonic antigen). This tests measures a certain protein in the blood that is often produced by tumors. Before my tumor was removed back in April my level was 21. A couple days after removal my level had dropped to 5. Normal for a non-smoker is around 3. On Friday my number was 42. I did not get this results until after I had emailed out an update. My doctor called and told me there is a strong likelihood the cancer was still hanging out and growing. Happy birthday to me!
So I spent the weekend imagining the worst case scenarios (an orange angry tumor with a bad comb over slowly devouring my insides) and the best case scenarios (this was all a plot by the liberal media to make me an advocate for a national healthcare system and really I never had cancer at all). Then on Monday morning (12/4) I went in for my PET scan. A technician injected me with a fat syringe labeled with a radioactive sticker. He told me after my scan to avoid holding babies and puppies or hugging people for a couple hours. After lamenting my ruined baby holding plans, I sat in a recliner for an hour while the radioactive fluid soaked into areas of high metabolism (like tumors) in my body. Another technician escorted out of the recliner and I was ordered to empty my bladder. Sadly, my urine did not glow green. The scan machine looked very similar to the CT machine but was longer. After lying down on the platform my whole body was moved inside the tube where I stayed for about half an hour while the machine did it's thing. Afterwards, I attempted to hug the technician as he escorted me out but he didn't seem interested.
Today (12/5) I met with my oncologist to discuss the PET scan results. There is indeed another tumor in my colon. She does not believe anything was missed when they took out the tumor in April. Instead this is a new tumor and my cancer cells were resistant to the chemo I was on. There is also a spot in my liver that might be a tumor. The next step is for me to get an MRI to better determine what is going on in the liver. After that I will go through four rounds of chemo with a different drug. Afterwards I will get another MRI and we will determine if the cancer is responding. I will then likely either way have a surgery to remove more of my colon followed by 8 more rounds of chemo.
If the spot in the liver is a tumor it might be treated with localized radiation. In addition to all of this I continue to have back pain and will have a separate MRI next week to determine if anything is going on with the spine.
I am also seeking out a second opinion. I trust my oncologist and think she is knowledgeable and likely correct in her recommended course of treatment. However, at this stage of the game I think I would be remiss to not seek other insights. Next Wednesday (12/13) I will spend most of the day at the University of Colorado Hospital in Denver. They have a very strong col-rectal cancer specific team and several different doctors will come up with what they think the best course of action is. Hopefully more knowledge and direction will be provided.
I know this all seems somewhat dire but I want everyone to know I am prepared to fight this as hard as I can. I am sad. I am angry. But I am also hopeful. Thank's everyone for your continued support. I will keep you all updated over the coming weeks.
So I spent the weekend imagining the worst case scenarios (an orange angry tumor with a bad comb over slowly devouring my insides) and the best case scenarios (this was all a plot by the liberal media to make me an advocate for a national healthcare system and really I never had cancer at all). Then on Monday morning (12/4) I went in for my PET scan. A technician injected me with a fat syringe labeled with a radioactive sticker. He told me after my scan to avoid holding babies and puppies or hugging people for a couple hours. After lamenting my ruined baby holding plans, I sat in a recliner for an hour while the radioactive fluid soaked into areas of high metabolism (like tumors) in my body. Another technician escorted out of the recliner and I was ordered to empty my bladder. Sadly, my urine did not glow green. The scan machine looked very similar to the CT machine but was longer. After lying down on the platform my whole body was moved inside the tube where I stayed for about half an hour while the machine did it's thing. Afterwards, I attempted to hug the technician as he escorted me out but he didn't seem interested.
Today (12/5) I met with my oncologist to discuss the PET scan results. There is indeed another tumor in my colon. She does not believe anything was missed when they took out the tumor in April. Instead this is a new tumor and my cancer cells were resistant to the chemo I was on. There is also a spot in my liver that might be a tumor. The next step is for me to get an MRI to better determine what is going on in the liver. After that I will go through four rounds of chemo with a different drug. Afterwards I will get another MRI and we will determine if the cancer is responding. I will then likely either way have a surgery to remove more of my colon followed by 8 more rounds of chemo.
If the spot in the liver is a tumor it might be treated with localized radiation. In addition to all of this I continue to have back pain and will have a separate MRI next week to determine if anything is going on with the spine.
I am also seeking out a second opinion. I trust my oncologist and think she is knowledgeable and likely correct in her recommended course of treatment. However, at this stage of the game I think I would be remiss to not seek other insights. Next Wednesday (12/13) I will spend most of the day at the University of Colorado Hospital in Denver. They have a very strong col-rectal cancer specific team and several different doctors will come up with what they think the best course of action is. Hopefully more knowledge and direction will be provided.
I know this all seems somewhat dire but I want everyone to know I am prepared to fight this as hard as I can. I am sad. I am angry. But I am also hopeful. Thank's everyone for your continued support. I will keep you all updated over the coming weeks.
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