Rainbows, Norse Gods, and surgery

Carrie and I arrived in Minneapolis on Tuesday evening. As we drove south to Rochester, home of the Mayo Clinic, the skies grew dark until we eventually were in the midst of a downpour. The storm continued across the Minnesota countryside until our destination came into view and we could see a rainbow arching above the Mayo buildings in downtown Rochester. Surely that was a sign that all would go well with my surgery and that my cancer would get it's buttocks thoroughly  whooped by my world class medical team. Then a lightening bolt crackled across the rainbow above the city. Surely that was a sign that Thor, god of lightening, was prepared to smite this terrible disease. I don't know. I'm not particularly superstitious but it's nice to pretend.

Tomorrow morning I will go into the hospital around 530 am for surgery. In preparation I have had eight different appointments over the last two days including blood work, urine tests, CT scan,   urology consultation, surgical consultation, oncology consultation, and vascular surgeon consultation. There are many unknowns with the surgery. I may require some removal/reconstruction of a ureters and an artery. I will likely receive a blood transfusion. Tonight I must do some bowel prep and in case you don't know it's going to be a blast. Tomorrow when I go in there will be a couple hours of prep. The surgery itself could take around 5 hours. I will be in recovery for a couple hours before getting moved to a hospital room.

At this point the process is out of our hands and we must wait and see. So much depends on the positioning of such a small mass of cells. I will know nothing until I awake from the anesthesia. Carrie will spend a long day waiting for updates and keeping others updated. May rainbows, lightening, Thor and all of our loved ones be throwing their support behind us. I love you all and will be posting sometime soon on the other side of this surgery.

A brief stint with a stent

Around 5 weeks have passed since my curd-filled trip to the Mayo clinic and in four weeks I will return for more curds (plus a major surgery). During March I kept active with some running and always getting my 10000 steps in. Cale will be running the Bolder Boulder again this year so I'm trying to make sure he is sticking to his training plan. We've been staying  busy with work, school, extracurriculars, soccer and relaxation  I've started building our garden area and will hopefully finish before traveling to Minnesota. I had many normal days where cancer did not dominate but unfortunately the beast has crept back.

Shortly after returning from Mayo I was contacted by a urologist there advising me to get a stent in my left ureter prior to surgery. There were concerns that if the tumor started to grow again the ureters could be further constricted and my kidney could be damaged. So on Monday of this week I returned to my favorite Denver hospital so my urologist could insert a small plastic tube up my urinary tract. Luckily, I was put out for the procedure. If you recall from my early post I am one of the lucky 1% with a double ureter setup on one of my kidneys. The urologist decided that only the upper left ureter needed the stent. I felt fairly normal after the procedure with the exception of some colorful urine. On Tuesday I began to experience sharp pain while urinating. It has since gotten better but is still there. Almost a year ago the cancer took all  the fun out of #2 and now it has taken the fun out of #1.

Now if my only concern was the stent I probably wouldn't complain but over the last two weeks I have started to experience pain similar to what occurred back in December before radiation. I have a cabinet full of various pain medications and for the most part can manage to function normally. Nighttime is the worst and my sleep is impacted. The doctors seem to believe it is inflammation from tissue healing after all the radiation.

The plan at this point in time is to push through this month, maintain a positive outlook, and
hopefully four weeks from now the beast will be destroyed and I will have a greater appreciation for #2, #1, and just about everything life has to offer.

Curds and Mayo

On Sunday my sister and I traveled to Minnesota for my consultation at the Mayo Clinic. The hospital is just over an hours drive from Minneapolis and we both got our first taste of Minnesota. There was plenty of blowing snow but a clerk at the gas station pointed out what a nice day it was compared to the rest of February (and probably the previous few months). I pointed out some gas station cheese curds and bought them. It seemed only appropriate given our upper midwest location. We arrived at our rental house in Rochester full on curds and ready for a new chapter to my medical adventures. My brother arrived from Maine later in the evening.

Rochester is a city of about 100000 people and well over half of them work for the Mayo Clinic. The city has a small downtown area packed full of tall building that are all part of the hospital. There is a underground level that connects the various buildings. In a strange way it is sort of the Disneyland of hospitals. The first stop on Monday was to get some blood drawn for tests. My second appointment was with the MRI machine. I got a bit of a scare when one nurse could not get blood to flow through my chest port. It had been seven weeks since it had been accessed which is the longest I had gone since it was installed. Clots can form in the tubes if it isn't flushed regularly. Luckily another nurse was able to get the blood flowing. MRI machines are very loud and they gave me ear plugs and headphones. Sometimes I got instructions to hold my breath but mostly I just laid in the machine for around 40 minutes. Next was  a CT scan. I think I'm a pro at these now. The contrast they inject gives you a 'oops-I-wet-my-pants feeling' but it didn't even phase me this time. Nice try CT scan!

After some lunch, where we may or may not have eaten some fried brie cheese curds, we had a meeting with a GI medical oncologist. First we met with a nurse practitioner who seemed to be the one responsible for coordinating all the different doctors on my care team. Then we met with the oncologist. He showed us the results of the CT scan. My tumor was pretty much the same size as my last scan in December. This is a good sign that my radiation treatment had worked and there was no growth. My tumor marker blood test (CEA) had dropped to 4.9 which was down from 40 something at the start of radiation treatment. This was another good sign. My original oncologist in Fort Collins had told me back in December that I was likely stage 4 now. The Mayo onc told me this wasn't the case and my current tumor is just a continuation of the tumor that was removed so I am still stage 2. The surgeons back in April likely didn't even see anything since the cancer may have just been some cells in this area of colon.

This doctor didn't have much specific info regarding my planned surgery but we did discuss some more general topics like why he thought there was an increase in colon cancer in younger people (a change in the gut biome likely caused by our wonderful American diets). He also mentioned new studies showing the dangers of mayonnaise which seemed oddly specific. Just for the record I don't eat mayonnaise. We left that appointment thankful he didn't say anything about cheese curds. However, at that evening's dinner we did skip the curds (and yes they were on the menu everywhere) and opted for a chicken sandwich with asparagus on the side.

The next day we first met with a couple of radiation oncologists. They were better equipped to talk about my surgery and what exactly they would be doing. The main reason I traveled to the Mayo Clinic was for inter-operative radiation, an option unavailable to me in Colorado. They basically move all your healthy organs out the way while you are opened up and give any nasty spots an extra high dosage of radiation.

My final appointment of the day was with the GI surgeon. He seemed very well prepared for me and very confident in his proposed courses of action. Basically, what I already knew was my tumor is doing some awkward stuff with my Iliac artery, some nerves, and my ureter. What I didn't know if it is also touching my small intestine. This means during the surgery not only will they remove the piece of my colon that the tumor is sitting on but they will also remove a little piece of my small intestine. Supposedly this should not be noticeable to me and my digestion in any way. The situation seems a little more questionable when it comes to the artery and ureter. A vascular surgeon will be involved with the surgery and they may have to resect/reroute the artery. A urologist will be involved and they may have resect the ureter then reattach it to the bladder. Regardless of all that he thinks the surgery is very much curative and I will only be in the hospital 3 to 5 days. The great news regarding the surgery is that he thinks they can also reattach my colon and I can lose the bag. The surgery is scheduled for May 4th. I still have some questions I am trying to resolve but overall feel good about the doctors and hospital.

We left that appointment hoping to meet with the vascular surgeon and urologist before we left town on Wednesday afternoon but unfortunately it did not happen. My brother left for the airport Wednesday morning. My sister and I went for a hike at a local natural area then drove up to Minneapolis where we took a good gander at the mighty Mississippi then enjoyed a brewpub before heading to the airport and yes we did order the cheese curds.

No Bells For Now

Yesterday was the 25th and final day of my radiation treatments as well as my last dose of chemo pills. When asked by one of the radiation techs if  I had any celebration plans I replied that I am celebrating with cautious optimism. When I finished my initial chemo treatment back on November 1st I rang the bell in the clinic and the staff recited an inspirational verse. I appreciated the ceremony of it all but yesterday I decided not to ring the clinic bell.

Since my last blog update I have felt better in every way. I still have no physical pain and I have the nausea under control. I could still have side affects the next couple weeks but based on how I've been feeling the docs seem to think I should be fine. I now have two weeks of normal living ahead. I have missed the monotony of daily life. I will go to work at my regular time and leave at a regular time. I will pick kids up from school and activities. I won't take 6 giant chemo pills everyday. I won't drive to Denver everyday.

Beyond these two weeks, I have a vacation/sibling reunion planned in sunny Rochester, MN. Joni, John and I have rented a house for a few nights and will be partaking in such exciting events as various oncology consultations, CT and MRI scans, and blood work not to mention our planned reenactment of the classic film Fargo. While there the docs at the Mayo Clinic will come up with a plan for surgery. The surgery should happen in the second half of March. I'm hoping to avoid any surprises in the scans or blood work but we will deal with whatever happens. Beyond that I really have no idea what will happen but hopefully will involve the vigorous ringing of many bells.

Warhammer of Emotional Messiness

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.

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!

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!