JUKEMO

I typically start my updates with the type of testing they do on me, so the doctor has time to evaluate it for critical markers in the blood and indications on the images. Well, there is no testing. No more CT scans. No more blood drawls. As I mentioned in my last update, all standard treatment plans have also been exhausted. In the 15-plus years since I was diagnosed with Neuroendocrine Tumors of the Thymus, I have managed to try every form of treatment available, including two clinical trials. Some forms of treatment were fairly easy, and some forms were outright brutal, but each treatment bought me another block of time which extended my life. I knew that day would come when I ran out of options, but it is no less shocking when it does.

I was hospitalized again in late December of 2023. I was going into another pain crisis that was bad enough to cause intractable vomiting before I even left home. This time the pain was worse than anything I have ever felt in my life. I could not sit still. I had finally reached a 10 on the pain scale! I did not even think a 10 was possible! I thought you just passed out or could not remember a 10. Well, you can…I just stood there shaking and screaming, begging for the nurse to make it stop. The whole time it was telling me one thing…the cancer was advancing.

The problem now is that not even the hospital can control what is happening. They had already given me a truckload of narcotics, NSAIDs, steroids, muscle relaxants and hallucinogens, without even touching this pain. What would happen if they couldn’t control it next time?

Eventually, they gave me so many drugs, my body was struggling to process them. I became unresponsive for 12 hours.

My family was flown in at the last minute. At one point during this hospitalization my breathing rate dropped to three breaths per minute. All this pain, slowed breathing, and an episode of flash pulmonary edema, along with a few other symptoms changed my prognosis from one year to less than 6 months. My palliative care team had no other choice than to recommend I sign up for hospice care. It was a shock to hear their recommendation because by the time they told me, I was feeling better and certainly did not feel like I belonged on hospice. The doctors at UC Health and especially palliative care have always looked out for what is best for my health whether I wanted to hear it or not. The news about signing up for hospice comes in waves, the same as the pain does. I know it will hit me again and there is nothing I can do to stop it. I am no longer sad, I am no longer shocked, if anything I am indifferent. I will deal with this the same way I dealt with the initial diagnosis, as something to beat. Until the next update, Just Keep Moving. JUKEMO

KG

: They even filled my pain pump with snail venom! See attached picture provided by Sonja.

Hey all!  It has been about six months since I last updated my clinical trial/cancer treatment on Facebook or www.jukemo.com.  I apologize to anyone looking for more frequent updates. My intention when starting the first clinical trial update was to provide a weekly, then monthly update, as dictated by my doctor appointments.  Once I was past the monthly updates it got easy to get off in the weeds concerning the topics I wanted to discuss.  It becomes especially difficult to make sure what I write is both meaningful and accurate.  Finding something meaningful is a bit easier because anyone reading from Facebook already knows me and most people have a connection to someone with cancer.  The accuracy gets a bit more difficult for someone writing to you with zero medical training.  The gap in postings; I really have no reason for the gap other than I just wasn’t feeling it.  I really haven’t had any treatments since around April of 2023.  It was also around this time when I had been admitted to the hospital for around two weeks to deal with another pain crisis.  This one was a particularly bad episode and I was exhausted when I got out.  My Palliative Care doctor had been researching the possibility of having an intrathecal pain pump implanted.  The idea here is that a pump implanted in my right side would deliver a base rate of medicine directly into the spine and to the main source of the pain.  It delivers a much lower dose of medicine than orals (1/100th) and none of the typical opioid side effects.  This pump has been a life-changing device and has kept me out of the ED on several occasions.  I can dive into the details of the pain pump in another post if anyone is interested. 

In the meantime, I had been doing some research regarding my left side diaphragm which was paralyzed during one of my first surgeries.  My research led to a procedure called a diaphragm plication surgery.  There are two major nerves that start at the anterior rami C3-C5 root nerves and pass through the neck, by the heart and lungs, and to the diaphragm.  These major nerves are called the phrenic nerves, and they provide the signals for the diaphragm to move up and down to control your breathing.  If either (or both) of these nerves are severed or damaged, the affected side of the diaphragm stops receiving the signals to move.  The reduction of a person’s ability to breathe depends on the severity of damage and other underlying comorbidities such as obesity or disease.  I have estimated that I may have lost up to 30% of my breathing capacity after my initial surgery in 2008.  It is much worse when I try to exert myself, such as walking fast with a group or exercising.  A large part of this is due to the “uncontrolled” diaphragm naturally moving to an elevated position.  This takes up space that the lung could use to expand even if the diaphragm is paralyzed.  The plication surgery allows the surgeon to go into the mediastinum and suture the diaphragm to itself. This opens this space back up allowing the lung to expand and increase the lung’s volume.  I had the surgery on May 22, 2023, and it was a success for the most part.  The surgeon was able to lower my left side diaphragm, but not as much as we had hoped.  My diaphragm had been in this position for almost 15 years, and it began to tear when they separated it from the bottom of the lung.  The surgery was still effective and I felt a slight increase in my ability to breathe almost immediately.  Now it was up to me to do the work required to take it the rest of the way, or at least as far as my body and mind would allow.

One of the driving forces behind this surgery was that I needed to be off supplemental oxygen during the day to qualify for at least two clinical trials that I might be qualified for.  I have been able to get off oxygen (at least during the day), but I did not have the markers they were searching for in these particular trials.  This left me in an unfamiliar position and I was told that I had exhausted all standard treatments for my type of cancer. That’s it. I am out of options as far as approved forms of treatments are concerned.  I knew this day was coming, but I always had a treatment or two in my back pocket.  But time moves on and so does the disease. Time to pivot and find a new path forward.

As I was working on this post (a few weeks ago), I received a call from my oncologist that there may be a clinical trial for me at Sarah Canon Research Institute.  This is the same research center and oncologist I had when I first moved to Colorado.  Dr. Falchook is the “clinical trial guy”.  That is all he does so he knows what is available and might show signs of promise for my type of cancer.  That said, the trials I have left are not specifically designed for Neuroendocrine Tumors of the Thymus.  The trial drug is called NXP900 (it doesn’t even have a name yet).  This is an SRC Family of Kinase inhibitors.  It looks like this type of inhibitor may have an effect on the growth of my type of tumor, but it is the first trial in humans, so no one really knows yet.  In fact, I am the 3^rd person in the world to receive this drug.  Pretty weird to think about, really.  I was able to start the trial on November 6, 2023, so I am already a few weeks into this trial.  It has mostly been a lot of doctor visits, labs, vitals, scans, and red tape.  So far, I have had some pretty severe fatigue, some breathing difficulty, mental focus, pain, and mild nausea.  This is a dose escalation trial, so the side effects may get worse as the trial progresses.  I guess the idea here is to keep escalating the dose until I just can’t take it anymore, or there is still significant growth.  I have been pretty clear with my doctors at this point that my main focus has shifted from pure survival of this disease to Quality of Life.  There is a certain freedom that comes with hearing you are Stage IV Metastatic with no standard options left.  It kind of puts you back in the driver’s seat.  I decide what is right for me.  I still respect and listen to everything my doctors advise, but ultimately, I make the decision on how I want this to go.  I just know I will NOT spend what time I have left lying in bed or feeling sick and in pain all the time if I can help it.  I will at least give NXP900 a chance to see if it slows or stops the growth of the tumors or until the side effects inhibit my quality of life.  I used to think the fight was everything and you stop at nothing until you are dead or beat the cancer. That attitude left long ago. I want to live, but I’m not going to stop living to do it. 

I will be posting on my blog and Facebook page again while going through this clinical trial and even after as I transition from treatments to self-preservation, healing naturally, and enjoying what I have left. These are not recommendations or advice.  It is just my life and my journey with cancer.

I would like to give a shout-out to my friends and fellow classmates, Deb DeLieto and Debora Burdsall.  They are both going through tremendous adversity right now and fighting their way back to their lives like warriors!  You both inspire me every day!  Keep posting, keep pushing, and keep kicking ass!

Take care everyone,

Labs (7:15 am), Vitals, Gemcitabine Infusion. I normally have a meeting with the Oncologist to review my labs and make sure all of the numbers are in the “normal” ranges. There was no-one in the office this morning, so the nurse called the doctor off site and got the permission to proceed. All was good with the labs.

There was really nothing new to discuss on this visit. I expect the typical nausea and fatigue I have associated with Gemzar (Gemcitabine). It seems to be holding the cancer in a stable position, so I will take whatever side effects it can dish out (within reason). I will be scheduled for a CT scan prior to the next infusion, so there will be more to cover in the next post. I would like to ask for you to pray for a classmate and friend that is going through difficult times with some health issues. If you are into that kind of thing, it would be greatly appreciated.

Until next time,

KG. Just Keep Moving #JUKEMO

I drove to UC Health at Highland’s Ranch at 8:30 am on 02/15/2023 to have a follow up Endoscopy done to see if the medication and reversal in vomitting has helped clear up my esophogitus. It is amazing how fast the procedure takes. Once they wheeled me back and administered the Propofol, it took about ten minutes and I woke up in the same room I left in. The pictures and video from this Endoscopy compared to the last one was night and day. I think it is safe to say that the Intractable Vomitting took its toll on my esophagus and was the main reason for the problems I was experiencing. This is another reason to go to the Cancer Care Clinic as soon as I feel the pain and vomitting starting. No more trying to wait it out.

The only thing that was shocking about this procedure was when the nurse dumped the cold bag of saline water down the front of me! Holy shit, that was breath-taking cold!

Until next time, just keep moving!

JUKEMO

KG

I am a bit early (or late) for making this post.  My next oncology appointment isn’t for another week or so, and I don’t get another CT scan for another four weeks after that.  The good news is this chemotherapy drug (Afinitor) seems to be working quite well.  It has kept everything stable for about six months now, which is within the expected effective working range of 12 – 24 months.  The only side effect I have noticed is a sore in my mouth that lasted for about 24 hours.  Other than that, I have tolerated this “poison” better than any other chemo I have tried in the past.  

I will still post again when that appointment comes due along with an honest explanation of what the CT scan and blood labs show.  If you read my Facebook posts, you know I was at the hospital last Saturday.  This was not one of my typical ER visits caused by a pain crisis or any other side effect from cancer.  Sonja called the infusion lab and my oncologist because I was living on Carnation breakfast drinks due to nausea and diarrhea.  It is so hard to troubleshoot these symptoms because there are so many variables.  These symptoms can all be caused by the Afinitor, cancer, my diet, or just the ordinary flu (except I had no fever).  It was such a huge help that I think I will use the infusion lab more in the future.  I should have known to ask about it because I used to get a bolus of fluids and on the days I flew from Indy to Denver to see Sonja.  I would bet if you think you are drinking enough water, you probably aren’t.  I immediately felt better after a bolus of fluids and Magnesium.

The main reason for this post is to ask you all a couple of questions.  The first is on the frequency of my posts.  I have generally posted when I see my Oncologist or when something comes up that I either feel strongly about or I think you would be interested in reading about.  Would you like to see more frequent posts or are they just fine the way they are.  The second question is in regards to the merchandise.  I have had numerous requests for some JUKEMO gear.  I have one order of shirts already ordered and received.  My plan with merchandise is to order what you would like (shirts, sweatshirts, hats, etc.), then give 50% of the profits to LiveStrong to help people living with or surviving cancer.  I ask because merch is not cheap!  For example, to get 24 hats will cost me $29.99.  Yeah!  So I would probably sell for $34 – $35, which is pretty steep.  I am still shopping for other custom clothing sites and I am not trying to make a living on all of this merch.  The mission has been and always will be to document my journey with cancer with the hope that it may lend some guidance or support for someone going through similar circumstances.  I have been fighting this for thirteen years now, and if my journey can help someone, then it is worthwhile.

So if you have a minute or two, leave a comment on Facebook or post to my blog site, and I will evaluate and see what I can do.  I am redesigning the website with a few new features and I hope to have the commerce page included.  I look forward to hearing your input!

Until next time, Just Keep Moving.  #JUKEMO

KG

CT Scan, Labs, Urine, appointment with Pulmonary Rehab, Oncologist, Palliative Care. 

I wanted to get this update in since I haven’t updated in a while.  It is not for being lazy, uninterested, or lack of material to discuss; it has just been a busy month with quite a bit of travelling.  Sonja and I travelled to Ashland Oregon to build my first Titanium bicycle frame, which was a full two weeks, then I had to fly back to Indianapolis for Christmas (sorry Tony B., I will catch you next time) and to see my mom and CE.  Sonja and I also drove to see Erica and her lovely family over New Year’s Eve.  While I do plan to update more frequently, it was nice to just focus on the things I needed to take care of.

The CT scans show that my tumors are still holding stable currently.  The Affinitor (oral chemotherapy) typically works for 18 to 24 months, and I am about 6 months on the drug.  Hopefully it will continue to work, but if not, we are always looking for other possibilities and new clinical trials are opening up all of the time.  The trick is finding a trial that I qualify for and will actually help stabilize my type of cancer (Thymic Primary & MEN Type 1 genetic disorder).  If you or someone you know is in a similar circumstance, you can find more information about possible clinical trials at http://clinicaltrials.gov.

I have been feeling pretty good for the last few months apart from the typical nausea and fatigue brought on by the chemotherapy, and just having cancer in general.  Travelling to lower elevations over the last month has really opened my eyes to how much of a factor elevation is to my breathing.  For those of you that don’t know, or are a new reader to this blog, I have had my chest cracked open once (a clamshell thoracotomy) and three thoracotomies through my back.  After thirteen years of fighting this disease, my palliative care doctor has been the first to admit to me that surgeries of this nature will cause severe chronic pain the later you advance in life.  I had spent a great deal of time researching this and I don’t know if it is because this type of surgery is usually performed on patients who are older and maybe aren’t as active in their daily lives, but it has been difficult to find any literature of the subject.  With the stygma that goes along with chronic pain and the opioid crisis, it is just nice to hear a medical professional acknowledge that my pain is very real and is as severe as I describe it.  So all of these factors take a toll on my breathing.  When I get back to sea level where the air is more dense, my breathing improves substantially.  I am not saying I want to leave Colorado, it is just something to think about if you or a loved one is experiencing breathing difficulty and lives at elevation at or above 5,000 feet.

So right on the heals of telling you how good I have been feeling, I was admitted to the hospital again last Wednesday.  I had gone to Ft. Collins to meet with a guy to see how his approach to bicycle frame building differs from the process I used to build my first frame.  Everything was going well and suddenly the pain and nausea came on like a storm.  Very fast and extremely painful, with nausea that will not let up.  I had taken off my pain patches and had not taken any of the breakthrough meds for the 1.5-hour drive to Ft. Collins.  The doctors think my pain and nausea were in part, caused by withdrawal symptoms from taking off all of my pain meds.  I can honestly say it was one of the most miserable experiences I have ever been through.  I felt like I was going to die.  After a full 24 hours of receiving IV pain meds and IV and suppository nausea meds (yes, this is actually what happens), it finally broke.  My goal has been to find a way to subdue my pain without the use of opioids but stopping all at once is not a good idea.  I plan to cover this topic in another post, once I have gathered all of the information, and have developed a plan.  If I can get a plan together that helps even one cancer patient a road map to getting away from opioids, this blog will have been worth it!  Some of the topics I want to discuss will be yoga, meditation, Tai Chi, tapering drugs such as Methadone, and of course cycling.  I can’t say enough about Tom and Kourtney Danielson and CINCH Cycling!  It is such a great community and Tom is a wealth of cycling knowledge and experience.  If you are looking for a cycling coach, I highly recommend Tom and CINCH Cycling.

That is all I have for now.  Until next time, Just Keep Moving!

KG   #JUKEMO

CT Scan, Virtual Appointment with Palliative Care. My appointment with Oncology was postponed due to my doctor being out of town. My appointment was rescheduled for October 21, 2021.

The Afinitor (Everolimus) seems to be working. My CT scan of the chest, pelvis, and abdomen shows that my tumors show no new growth from the last set of imaging. Everything looks stable and I will take it! When speaking with my Oncologist, Afinitor, historically, works on patients for 12 – 24 months. I have learned, that at this stage of my cancer journey, I am getting everything I can from each new chemotherapy drug, buying time in monthly blocks. I am essentially taking each new drug until it stops working and then switching to another one.

I did not expect to be writing this, but this great news is bittersweet. I say this because our good friend, Jeff Linder, passed away on September 25, 2021. It is strange to be at the age where losing friends is becoming more frequent. This passing, however, has hit hard. I met Jeff when I was a freshman at Greenwood Community High School in 1983. For reasons I can’t explain, Jeff and I had a connection. Jeff had the unique combination of being a total badass, extremely funny, and was kind to everyone. I was a 120 lb freshman when I entered high school and Jeff took me under his wing. Jeff made such an impression on me, that I asked Coach Scotten if I could take his football number after he graduated, #64. Coach just looked at me and asked if I thought I could fill those shoes. I don’t know if I ever came close, but I played my heart out trying.

I will never forget discussing The Big Red Barn one day after football practice. We were discussing how much fun we had at the skating rink over the years and Jeff said, “Let’s go skating.” I was floored! I was a freshman. This kind of thing did not happen. I know this because I remember Jeff Smith and Jennifer Docke (both seniors) showed up at the skating rink to see if it was really happening! I just can’t explain how much simply going to the skating rink with Jeff has meant to me. It was surreal, and it is one of my favorite memories. I have thought about this memory constantly throughout my adult life. Jeff Linder was many things throughout his life, but to me, he was the badass senior football player that befriended a skinny little freshman. Jeff remained a good friend throughout our adult life. Godspeed my friend, you are truly loved and will be missed immensely.

I was going to write more but decided against it. This update deserves to be posted on its own. Until next time…Just Keep Moving!

KG #64

I have spent the last week at my brother’s house in Idaho. It was great to see him, my sister-n-law, and my oldest nephew Michael and his wife, Beth.. We spent most of our time just catching up, a wine tour, shopping, preparing great meals, and laughing until it hurts! It doesn’t get any better than that. I was sad to leave.

But now as we head back home, I am jumping back into the real world. I have a PET Dotatate scan tomorrow, 07.19.2021, and then meet with my oncologist to see what our next plan of attack will be. I may be headed towards a more traditional chemotherapy, but we will cross that bridge when we get there. I also have an appointment with a nurse practitioner in Palliative Care, which I will discuss in a later post.

As for now, I am working on a major update to the jukemo.com website which will look more professional and will be easier to navigate. I also plan to post more often. It won’t always be cancer treatment updates, or even health related for that matter. I have some new pages I want to incorporate and even a jukemo.com store where a percentage of the sale of jukemo.com merchandise will go towards a cancer support foundation. I am working now to figure out how and where to give this financial support. If you are a reader of this blog, I am counting on your input to make this site informative, supportive, and fun to visit.

And to my nephews Kelly and Ryan; I am sorry I didn’t get to see you guys this trip, but hopefully soon! When I come back to Idaho, be prepared to jump out of a airplane! Steve is looking into it now!

Until next time…Just Keep Moving!

KG

Labs, CT of chest/abdomen/pelvis, urine, meeting with the Oncologist. We reviewed my latest scans which indicated that the tumors in my chest and spine were stable, but there was some growth in one of the tumors on my pancreas that deserves some attention. My Oncologist met with his team (the doctors all meet on Mondays to discuss their cases) and decided I need a PET Dotatate scan. The radiology technicians inject me with a radioactive substance called a tracer. The tumors have what are called somatostatin receptors. These receptors are found in carcinoid tumors (in my chest) and myelomas (in the bone marrow) and light up when the positive emission tomography (PET) and computed tomography (CT) cameras are used. This helps the doctors see any changes in the cells and helps them decide which treatment might be best for me. Right now I am on an oral treatment plan with a chemo drug called Afinitor (Everolimus). This is a drug already approved by the FDA to treat neuroendocrine tumors. If the PET/CT scans show that the tumors light up (meaning they are active), we may need to switch back to a more traditional type of chemotherapy that will be infused through my power port (goodbye hair…again). I did not ask what the infusion drug would be. I should know more in the upcoming week and will post in the next update (which should be coming more frequently).

Sonja and I have spent the last week in Meridian, ID with my brother and sister-n-law. They have a gorgeous home and we had a great time catching up and just relaxing, laughing, and enjoying the company of family. Yesterday, my brother Steve and I, had an interesting conversation about my health and having to start over after your health goes south. It can be a real gut punch, especially after being in great shape prior to cancer. It can really get you down mentally; like all of your hard work was for nothing, and now you have to start over at square one. It is easy to get down mentally when you start training again if you try to go back to the same weights (lifting) or distances and intensity (cycling). The key is to just do something. Everyone who has done something great has had to start somewhere. Whether it is lifting weights, cycling, running, going back to school, starting a new career, etc. You have to start…just do something and build off of that. I have started lifting again to supplement my cycling and I had to use 10 lb weights to do squats. That is a long way from the 350 lb that I used to do, but can you imagine trying to jump back into that routine. I would stall out immediately and probably end up in the ER. My point is, don’t be discouraged. Nobody likes starting over, but every Elon Musk had to start somewhere…and so do I. So grab those ten pound weights and just do something.

Until next time…Just Keep Moving!

KG

Note: For the second year in a row, the organization that hosts my bicycle ride on the Tour De France route has had ton cancel. There seems to be an uptick in the number of Covid cases and they felt like they could not provide a safe ride. Ride Le Loop is a great organization and they have been more than fair with the way they have handled the situation. I sincerely hope I can do this ride with them in the near future. If you are reading, thank you Sarah and Kate! Hopefully next year.

If you donated to my charity, the William Wates Memorial Trust, the money is still going to them.