Author: Kelly (Page 2 of 3)

Labs, Weight, appointment with the Oncologist, follow-up on the reaction or side-effects, if any, to the drug Afinitor (Everolimus). Dietician, Advanced Cancer Psychologist.

Welcome back. My last appointment was actually last Wednesday, May 14, 2021. I have gotten bad about pushing my updates back a few days from the actual appointment date. I don’t know about any of you, but it seems like the more free time I have, the less I get done, or at least get done on time. If my schedule is jam packed, I don’t have any time to mess around, and I just seem to go on auto-pilot and I get into a get-stuff-done mind-set. So no more putting off my updates! I will be doing them on the day I have them!

To recap what has been happening with my treatment plan, I am not currently on a clinical trial. If you missed the last update, I was bumped from the clinical trial because my tumor was night the correct grade. The clinical trial, which made the most sense in terms of having a positive outcome, was looking for patients with a high grade tumor and my tumor (s) are low grade. What the hell does that mean, you ask? I had the exact same question, so buckle up.

I want to start with cancer staging. This seems to be what most people are used to hearing about and are familiar with. Tumor grade and cancer stage are not the same thing. When physicians refer to the stage of a particular type of cancer, they are referring to the size and reach of the primary (original) tumor and whether or not the cancer has spread throughout the body. The cancer stage is based on factors such as the size and location of the primary tumor, where the cancer is in relation to lymph nodes, and the number of tumors present. If you are anything like me, you are asking, “What is a lymph node actually, and why is it always in the cancer discussion?”. So, from what I understand, lymph nodes are small glands that act as filters for, you guessed it, the lymphatic system! This is a clear fluid that travels through the lymphatic system carrying white blood cells (among other substances) to fight off infections, and cancer cells. When cancer cells break off from tumors, they attach to blood vessel walls or lymphatic system walls and will usually accumulate in a lymph node closest to the primary tumor. The lymph node will usually begin to swell as it tries to fight the cancerous cells indicating to a patient or physician that there is a problem. When the cancer cells spread throughout the body and to organs, it is called metastasis. Please don’t freak out! Swollen lymph nodes are often caused by something other than cancer cells accumulating, like the flu. If you are interested, there is a great section on cancer staging at www.cancer.gov.

So on to tumor grades and why I was turned down for a clinical trial. The trial was looking for high grade tumors, which basically means the tumors do not look “normal” and are more aggressive and more likely to grow and spread faster. My tumors are low grade and are more likely to grow and spread slower. This has advantages and disadvantages. I am fortunate that my tumors are low grade in the sense that they are slower growing and give me more time to make informed decisions, but that also means that they do not respond very well to standard forms of chemotherapy and radiation. The problem for me is that after I have exhausted all of these forms of treatment, the cancerous tumors will still keep growing, and eventually spread to other organs in my body and eventually be fatal. I don’t mean to sound “gloom and doom”, but this is just the way things happen. This is what I mean by saying I go with a treatment until it stops working and then look for another treatment, either standard or clinical trial. This strategy buys me more time, treatment type by treatment type, until the research catches up with the disease and we find a cure. If you would like to find more information on tumor grading, please take a look at the National Cancer Institute website at: https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis/tumor-grade-fact-sheet#:~:text=In%20general%2C%20tumors%20are%20graded,to%20grow%20and%20spread%20slowly. These are the websites that I use for in depth information to reassure Sonja and myself that we are making the right, or most well informed decisions concerning my health and longevity of life. My doctor is my number one source of information, then the websites, then other patients that have been down the same path that I haver

I will say it again, I can’t stress enough how important it is to stay informed on your own sources of information concerning your health. No one, and I mean no one, cares about you and your health like you do, so please, stay informed and question everything. Doctors are people too, and people make mistakes. No doctor worth their salt will get upset about you asking questions. If they do, find another doctor. I have to say this because I have run into a case or two where people have told me that their physician got upset when they asked about their cancer situation. When I asked about the whole confrontation and they told me they were going to “dot the fucker’s eye” (excuse my language, but for real, this is what they said) , you have to understand why the doc said move on.

I hope this update has helped, and if you have questions relating to the update, please ask in the comments section or contact me at the following: email: kglover@jukemo,com or cell: (317) 691-2760

On a final note for this update, I plan to add a few more pages to the blog including the following:

A “Stuff I Like” page with a different product or anything really that I just enjoy.

My “Frame Building” page where a timeline of my bicycle build is going with pics and videos.

A cancer resource page. I wish I would have had this active tonight, but it is already 2:35 am!

My training (cycling) page. I know, I know, I am getting to it! Updates starting Monday 05.24.21

And most importantly, your requests (within reason)! Let me know if you enjoy the blog and what changes you would like to see. I am pretty thick skinned these days, so lay it on me! Let me know if I am doing ok or awful. I can’t guarantee that I will make all of the changes, but I will promise that I will look at each request seriously and try to accommodate each one.

Ok. That is it for now. I have to go to bed. I appreciate the time you take to read this humble little blog and I will be back soon. So, until next time, Just Keep Moving!

KG

Labs, CT Scan Chest, Pelvis, and Abdomen, PET Scan, MRI, Pending Echocardiogram and Endoscopy to biopsy preexisting tumors on my Pancreas. The Bronchial Endoscopy from March 26, 2021 confirmed what we already knew comcerning the metastatic nature of the largest tumor located near the AorticPulmonary window.

So now I have a question for all of you. Family, friends, classmates, acquaintances, Lambda Chi Alpha brothers (IE1328), coworkers, visitors to the blog, everyone in between…What would you do if you were told you had two years left to live?

I now find myself in unfamiliar territory for the first time in a long time. With the cancer getting more aggressive than it has in the past, I was faced with asking the tough questions. What is a realistic life expectancy for my situation as we are right now? How long do I have to live? Who hasn’t wondered what the answer to that question is? Well, now I know, or at least have an estimate that most people will never know, or would want to know. Surprisingly, I wasn’t freaked out. I will admit that there was a back and forth, a surreal, and breathtaking sensation that came in waves. I guess it can be frightening to imagine how it will go down. I caught myself thinking, “Will it be painful?”, “Will I be panicked?”. But no matter what thoughts you have, you can’t stop it. It is going to happen and there is nothing you can do to stop it! When I was 16, I read a book called, “No One Here Gets Out Alive” (Biography of the Lizard King), and truer words have never been spoken. But a strange thing happened when I woke up this morning. I rolled over, kissed Sonja, I told her I loved her, and got up to go get us some Starbucks. A strange peace washed over me and I thought, “How unbelievably fortunate I am to have this opportunity!” To leave this world and the people I care about, on my own terms, or close to it. But then I realized, this is not just an opportunity, but a responsibility. A responsibility to the Cancer Community, to my family, my friends, to all of you fine people reading this blog! I have a chance to make a difference in this world, to leave a positive mark on humanity in a world where we desperately need some positivity. If you are given that rare and unique opportunity…seize it! It was one of the best feelings I have ever felt. It was like all of the really unneccessary minutae of my day just became unimportant, and I was left withall of the “good stuff” to focus on. I don’t know exactly what that is going to look like yet, but sit tight and I will think of something.

20210417 Ammendment to the 20210409 Cancer Treatment Update:

This post is going to be way off of the original format I usually use, so please, bear with me. I have had another appointment with the Oncologist on the 14th to discuss my current situation. We have decided to stop this round of chemotherapy because it is just not working. The cancer is advancing on all fronts. This is very typical for carcinoid tumors and probably most cancers. As time progresses, so does the cancer. The existing tumors have grown as well as new tumors in the spine and bone. This would explain the increase in symptoms, pain, and my overall feeling. I told Sonja a few months ago, something was changing in my body. I could physically and mentally feel it. It is just astounding how the body fights disease and how we can know and understand our own bodies. The good news is that I have tentatively been accepted to a clinical trial. To a lot of people, a clinical trial means your options are narrowing, and they are, but it also means there is a path forward with new medications we have not tried yet. There is hope. There is always hope. I hope the symptoms go away. I hope they find a cure for this disease. “Hope is a good thing, maybe the best of things, and no good thing ever dies.” Andy Dufresne. This is one of my favorite quotes. This is not the first time I have posted this quote, and I have no doubt, it won’t be the last. If you have been following my updates since the beginning, you know that this whole website started due to a clinical trial. I had been on the fence about posting something so personal, and to be quite honest, a little frightening and stressful. But with the encouragement from Sonja, Beth Green, and several of you, I made that first post and I was floored at the number of positive responses. It was truly humbling and very emotionally charged.

20210421 2nd Ammendment to the 20210409 Cancer Treatment Update:

The amendments are coming quicker than the doctor appointments right now, but this is for good reason. There are family members that I was not able to get a hold of about the life expectancy issue we received on April ninth, and I absolutely had to speak with them before I updated my blog. I just could not have posted this without them hearing it from me first. I now feel much more comfortable posting this without feeling like I had slighted someone very close to me. Now that I have informed everyone, I want to make sure this doesn’t sound like the doctors have given me a timeline, and I am accepting it as law and laying down without a fight. Anyone who knows me at all knows that will just not be the case. Nothing changes in the way that I will approach this new information and new scans. The fact is, we knew this was coming. I am surprised, looking back, that it did not come sooner. That is great because along with the dedicated and ridiculously talented medical staff I have had the pleasure of getting to know and trusting with my healthcare, I have extended this journey longer than most docs would have given me back in 2008. It is so true that your mental state and a positive attitude go a long way in determining how things will turn out for you. I believe this, and so should you. Yes, there comes a time when your body just says, “No more.”, and things begin to shut down. And maybe part of that is because you get mentally tired and can’t keep going. I am not arrogant enough to say this way is right and if you want to keep living, you have to do things this way. The fact is I don’t know. None of us do. We get up to face each day, and we do the best we can with what we have, and really, that is all anyone can ask from us. Do the best you can. So that is what I will do, the best I can, and hopefully, I can inspire or educate someone else so they can live a while longer. I mean, that is what this blog is all about. That is what the clinical trial updates have always been about. Helping someone else that might be in the same situation to get every last ounce of life we can with what we have. I’m sure I will have some really great days ahead of me, and I’m sure I will have some really bad ones too, but if I can Just Keep Moving on those really bad days, it will make those really good days that much better.

I have some additions to the website I want to have incorporated by the beginning of next week as well as some twists to some old ideas that are necessary and should be pretty cool. My next appointment with the Oncologist is next Wednesday, April 28, 2021. Next week should have been a week of testing and getting baseline numbers for the start of the clinical trial on May 03, 2021, but I just found out I got booted from the clinical trial because the tumor I have is not the right kind for the study drug. I refrain from going any further at this time because I need to do a little more research and speak with the Oncologist before I try to explain how and why I am not eligible for this particular trial. In the meantime, I will begin on another form of chemotherapy while we search for another clinical trial. When I explain the how and why for my acceptance or rejection to this clinical trial, I will use it as a springboard to how the clinical trials work. I may have to do a couple of interviews with the doctors so I know what I am talking about, or at least appear to know what I am talking about.

So until next time, take care and Just Keep Moving!

KG

Emergency Department visit on 03.11.2021 & again today, 03.24.2021.  Labs, CT of Chest, Abdomen, & Pelvis.  I also had an BronchoEndoscopy, and am scheduled for a PET scan, MRI, and Endoscopic Ultrasound.

Whew!  That is a lot of testing!  But I am more than ok with it.  I will do my best to explain what we hope to achieve with each test.  Any of you Medical people, feel free to call me out if you think I am off on a particular test.  I only know what I research and question my Oncologist on. 

So first let me go back to the 11th of March.  I took Sonja to the Denver Airport to fly back to Indiana to bring back her Dad’s belongings after his passing.  I must take a moment here to recognize Tom Gunning and what a nice, kind, and funny man he was.  He treated me with respect and welcomed me to the family.  He invited me over when I still lived in Indiana, just to eat a meal and talk.  The world is definitely a bit darker without Tom’s light.  Godspeed Tom, and thank you from the bottom of my heart.  You will always hold a special place in my heart.

After dropping Sonja off for her flight, I hit a concrete barrier with my Jeep.  Not a great way to start the day, but it gets even worse.  After years of handling my own cancer treatment, including medication, I was taken to the hospital with an overdose.  Yes, I ODed.  I was hesitant to write this on my update because of the negative stygma that goes with the word overdose.  With my cancer getting more aggressive in the past six months, so does the pain caused by cancer.  I wear two 100 microgram Fentanyl patches that get changed out every 72 hours.  The problem is sometimes these patches don’t go on well, or they come off, especially in the shower.  I noticed that I was missing a patch, and after several minutes of searching, I just put on another patch.  Well, the missing patch fell off but reseated itself in my belt line, and was very much still delivering Fentanyl  to my system.  So now I have three patches on..  If you are unfamiliar with Fentanyl,  it is basically lab grade heroin and 100 times stronger.  I remember walking into Target to make some everyday purchases, and the next thing I know, I was in an ambulance speaking with an EMT.  He said I was taking 6 breathes per minute when he hit me with 0.5 ml of Narcan.  Boom!  I was back immediately!  That drug, along with  a Road ID  bracelet,  saved my life!  I can’t imagine how people are living with addiction to this stuff, but if you are, I urge you to get treatment and leave this stuff alone!  It is one of the four Horsemen of the Apocalypse and it is the one called death. 

Back to more positive discussions,  like cancer.  😀  The Bronchio Endoscopy was ordered to get more tissue samples to be biopsied.  These samples will help to determine if there are new treatments available for my cancer. All of this through genetics and DNA. It is a wonderful time to be alive.

Next I will be getting a PET scan and MRI to get a better look at what is going in my Media Stynem and spine.  These additional scans just take a different “slice”  or view of the areas of interest. 
I went to the trouble of copying and pasting the Wikipedia entry on the PET scan.  I would not normally be that lazy,, but I am not as familiar with this procedure as I am the others.. 

Positron Emission Tomography (PET)[1] is a functional imaging technique that uses radioactive substances known as radiotracers to visualize and measure changes in metabolic processes, and in other physiological activities including blood flow, regional chemical composition, and absorption. Different tracers are used for various imaging purposes, depending on the target process within the body. For example, 18F-FDG is commonly used to detect cancer, NaF-F18 is widely used for detecting bone formation, and oxygen-15 is sometimes used to measure blood flow.

PET is a common imaging technique, a medical scintillography technique used in nuclear medicine. A radiopharmaceutical — a radioisotope attached to a drug — is injected into the body as a tracer. Gamma rays are emitted and detected by gamma cameras to form a three-dimensional image, in a similar way that an X-ray image is captured.

PET scanners can incorporate a CT scanner and are known as PET-CT scanners. PET scan images can be reconstructed using a CT scan performed using one scanner during the same session. 

I have done the same copy and paste with the MRI.  Magnetic resonance imaging (MRI) is a medical imaging technique that uses a magnetic field and computer-generated radio waves to create detailed images of the organs and tissues in your body.

Most MRI machines are large, tube-shaped magnets. When you lie inside an MRI machine, the magnetic field temporarily realigns water molecules in your body. Radio waves cause these aligned atoms to produce faint signals, which are used to create cross-sectional MRI images — like slices in a loaf of bread.  This, by the way, is the only scan that makes me claustrophobic.   I absolutely hate getting in a tube where I can’t roll over or sit up.  It never used to bother me, but man, it sure does now.  I remember one year working at Duragreen, we broke a pipe and our pump was throwing 600 gallons per minute up in the air!  I let Mr. Williams (Jon’s dad, not our coach) hold me by the feet as I went headfirst into that hole to shut off the water.  No way I would do that today. Side note: Mr. Williams is now an author. His first book, The Quotis Gene is available now on Amazon or Audible. Check it out!

The last test is the Endoscopic Ultrasound.  Endoscopic ultrasound (EUS) is a minimally invasive procedure to assess digestive (gastrointestinal) and lung diseases. A special endoscope uses high-frequency sound waves to produce detailed images of the lining and walls of your digestive tract and chest, nearby organs such as the pancreas and liver, and lymph nodes.  My latest imaging has suggested that I have new tumors in my stomach at the lyphnodes. 

If you have followed  my posts, you can see where the Oncologist’s concern with new growth in the spine, stomach, and enlarging tumors in the chest in the last six months is completely understandable. 

I will reiterate that I am not scared of what is coming, just angry that I can’t focus on my job at Ball, my relationships with Sonja, and riding and building bikes.  I have put off the latter for a long time, so now I am hell bent on building my first bicycle frame as well as the paint and final assembly.   My plan is to time lapse the build with my GoPro 9, and post it to a page & YouTube channel  on www.jukemo.com.   I am also working on another project with Sonja that I desperately want to finish.  It should be really good stuff!

So check in often or set it up where you get a “push notification” when I post new material.  The website/blog should get much busier now.  Also, feel free to contact me if you have a shit diagnosis and don’t know where to turn.  I don’t care if it is cancer or addiction.  I am here to help.  You do not have to face this alone!

Until next time, Just Keep Moving!
KG

I went back to the new Oncologist on Wednesday, 02.17.21 to begin my second treatment of the new chemo cocktail. It is kind of like happy hour, but completely different…they are literally killing you one cell at a time. The main drug is called Carboplatin and it has been up and down from the day I first was infused, until now. I will provide more details in another post.

The main reason for this post is my hair loss. It happened exactly like the doctor said it would. I noticed last night when I couldn’t sleep. I kept seeing hair on my laptop (which is a bad ass machine!) It may be cliché, but I am doing this on my terms. I get it. The cancer treatment is going take my hair, forcing me to make the first move. But it is not winning. To paraphrase Stuart Scott, “You beat cancer by how you live, why you live, and the manner in which you live.” Today, I choose to win by how and why I am living. I will do it with people I love and also love me. I will do this on my terms.

For now I have to go, Sonja is back with the clippers.

Until next time…Just Keep Moving.

KG

So, for the first time in all the years I can remember, I had a flat out temper tantrum in the car on the way to a doctor appointment. I must first apologize to the best person I have ever known; So sorry Sonja, the frustration had just hit the limit. I love you with every ounce of my being.

That said, My appointment today was with a new Oncologist at CU Anschutz. Over the last few months, I have been doing a chemo treatment that, in my opinion, is not working anymore. I know now when things are going sideways. I feel different when something is happening. The problem is the lack of urgency. I do not question my oncologist’s knowledge or professional status, but it took them three weeks to give me the results from my latest imaging. The PA called me on the way to my appointment with CU Anschutz and told me we will continue on our current path of treatment, new lesions in the spine, but small and nothing to worry about. Then she proceeded to tell me they are in the L1, L4, L5, S1,S2 , but they are small and we don’t know when they originated. My thought was, “What?” I want to make this clear, if you are the person that this shit is growing in, it is a big deal. In the last year, I have had two new tumors in my L2/L3 and L8, and now several new lesions! This is cancer. This is no joke and time is all I have. So when I get to the new Oncologist, we go through the report and the first thing that jumps out from the radiologist report is, “This new growth is worrisome.”. I just cannot fathom why they would tell me not to worry and continue on a path that has clearly no effect anymore. I understand my situation very clearly; I am not looking for a cure at this point; I am just trying to stick around until the research catches up with the disease. I understand my station in life and my battle with this disease. Just tell me what is your medical opinion. No emotion, no sorry, just tell me. Give me the information I need to sit down with Sonja, and make the best decision with the options available. Period.

So, back to the update; I have a few options, but they are getting fewer and fewer. I will definitely switch oncologists and move to CU Anschutz. They feel more like what I had at IU Simon Cancer Center. I miss Dr. Patrick Loehrer; if you are reading, I really miss your demeanor, conversation, and professionalism. But I digress. It looks like my best option now is to start a known chemotherapy regimen that is a little more traditional. I am going to lose my hair, I am going to be very sick, I am going to be tired and my blood counts are going to go way down. I have the option to do a clinical trial, but I would have to travel to Arizona every three weeks. I am not willing to risk exposure to Covid-19 at this time. So the Chemo/Immunotherapy will buy me some time and hopefully the clinical trials on hold because of the pandemic will open back up. I will wait for other clinical trial options before I make that decision, but I am almost sure of what I need at this point.

I guess my takeaway from this is; advocate for yourself. I am sure I have posted about this in past posts, but it is my #1 rule and the first thing you should do. Research your situation, find support. If you don’t have support…call me (317) 691-2760 or DM me. I will give or find support for you. I mean this. You are not on an Island. Time is of the essence.

The song I posted today on Facebook is Soundgarden’s fantastic rendition of “Fell on Black Days”. It has been the best song I have ever known to help me through this process. Don’t take this the wrong way, and I already know Chris Cornell’s explanation of this song is not about anything that happened in life. No tragedy, no cancer, just nothing. You just fell on black days. Its life. Its healing to me. Today has been rough on me and more importantly, on America. I hope all find peace and a true solution to our issues now.

Thanks for visiting and supporting me through this journey. Life is good. People are good. Let’s let that sink in for a while.

Just Keep Moving. Just keep moving…

KG

My last appointment was on 08/04/2020. We did vitals, labs (bloodwork), Lanreotide injection, and a discussion with Dr. Cohn. This was not a typical appointment. It has been a while since I posted an update on here or Facebook, so I probably need to go back and get you caught up on everything.

I need to go back a few months, maybe to the start of the worst year we have all experienced in a while, enter 2020. My oncologist, Dr. Allen Cohn at the Rocky Mountain Cancer Centers suggested that I reach out to a pain management doctor to see if there might be an alternative way to deal with my chronic cancer pain. Ever since I had the clam shell thoracotomy, and subsequent thoracotomies, I have had pain in my chest that usually radiates towards my back where my surgical scars are located. Over time, this pain has become more frequent and severe. We have not found any one trigger, although fatigue and stress seem to make it worse. The doctors can not pinpoint exactly where it comes from and seem to think it may be scar tissue from the surgeries, the cancerous tumors , or maybe a combination of both. When the pain decides to “show” itself, it typically comes on very fast and with an intensity that makes me squirm in my seat and eventually makes me so sick that I start vomiting and can’t stop until I get assistance from the Emergency Department. I have medication here at home, but once it gets that bad, I usually have to have IV meds to stop the nausea and then the pain. The other issue is my tolerance for pain medication. Because I take medication at home to keep the pain from getting out of control, when it does, it takes a very large amount of IV pain meds to bring me back to normal and stop the vomiting. Because of this tolerance, my pain doctor had suggested that I look into the literature and videos he had on a spinal stimulator made by Boston Scientific. I honestly don’t know if this is the answer we were looking for, but I thought it was worth looking into. So I completed the questionnaire and the psychiatric evaluation that is required for the 7 day trial. The procedure is to install a temporary unit for 7 days to see:

1. If my pain is reduced by at least 50%
2. If I am able to get back to my daily activities
3. If my need for pain medication is reduced
4. If I’m able to relax and sleep better

If it looks like the SCS unit will accomplish these goals, they would go back in and install a permanent unit that people would not even know is there. I had the appointment set with Dr. Jonathan Berardini at MD Pain and I was excited to see if the unit would reduce some of this pain I have been living with! About a week before the procedure was to take place, I was admitted to the hospital again for severe pain in my chest and intractable vomiting. It was taking more meds than usual to get both the pain and the vomiting under control on this stay. I had gotten used to what it takes to get me back to feeling good, so it was somewhat alarming at how many rounds of IV narcotics and potent anti-nausea medication they were giving me. At this point, I was told I had tested positive for Clostridium Difficile. C-diff is a bacterium that can cause painful diarrhea and a life threatening inflammation of the colon. I wasn’t happy to hear I was positive for C-diff. again, but it did help explain why I had been so fatigued and just feeling terrible for the previous week or so. I also knew where to go to fix the C-diff. Colorado Infectious Disease Associates. Dr. Sean Pawlowski is by far, one of the best doctors I have met on this journey I began almost 12 years ago now. He is very professional, down to earth, and personable. Most importantly though, he really knows his stuff! When this issue first presented itself, he assessed the situation, pinpointed the problem, and took the necessary steps to fix it. Simple. I wish all of this journey were that simple.

I called Dr. Bernardini back for our video conference to schedule the procedure to install the 7-day trial SCS. I remember a brief pause and a look of surprise, right before he asked me if I had spoken with Dr. Cohn yet about the results of the MRI. I thought, “Uh-oh!”. I could almost see him “putting on” his professionalism. He calmly told me that the radiologist had found 2 new tumors in the thoracic region of my spine and the procedure was “off” until I spoke with Dr. Cohn and we figured out what we are dealing with, what the treatment plan would be, and how long that would take. Back up for a minute. Two…TWO new tumors? In my SPINE? WTF?

I immediately called Dr. Cohn’s office to set up an appointment to discuss the new findings in the MRI. So, here’s the results of the MRI. The existing tumors on the pancreas show no signs of activity or growth. All tumors in the thoracic region are active on a systemic level. The tumors that demand the most concern:

• The tumor next to the aortic/pulmonary window – Shows overall growth of 1.4 cm since measurement at time of last CT scan.
• The first new tumor lies between T2 and T3. Measured size is unknown.
• The second new tumor lies next to T8. Measured size is unknown.

So now the question became how do we treat my cancer from where it has progressed to now? Radiation? We tried radiation back in May of 2019 to see if it would help with the pain. It was not successful. If anything, it made me hurt worse and vomit more. No good. In addition, radiation would target the tumors specifically and individually. I felt that the cancer had begun to grow systematically, so maybe we should treat it systemically. Sonja agreed. Dr. Cohn Agreed. The Gallium scan agreed (like a PET scan, on 08/03/20). The new plan will be to continue Lanreotide injections once per month, begin a new oral chemo that will consist of two different drugs; we will call them X and Y. Drug X will be twice per day for two weeks, then add drug Y twice per day for 5 days. At the end of this cycle we get a chest, abdomen, pelvis CT scan to assess the effectiveness of the protocol to determine whether we continue with, adjust, or find a new protocol.

So now we are up-to-date. This is not exactly what I wanted to hear, but there it is. We shake off the bad news, regroup mentally, and prepare for the next chapter. I have committed myself to make some changes in my life going into this next round of treatment. Some changes are new and maybe should have been made a long time ago, some changes are old and should have been kept up with. I will talk about these changes in future updates as well as my cancer treatments and training for three stages of the Tour de France in 2021.

Thanks for reading. Until next time…Just Keep Moving!

KG

So far, my first blog/website has not gone as planned. Sometimes I tend to have grandiose ideas or plans, that don’t always come to fruition. That is ok with me. It doesn’t mean I am giving up on my ideas for this blog, it just means I didn’t account for some things, such as another week long stay in the hospital or a pandemic postponing the 2020 Tour de France and thus cancelling our trip to Europe (I will touch on this development in a later blog). So jukemo.com will continue. It is just very fluid right now and probably will continue to be so. I know I will update it at least once a month like I did with the clinical trial updates on Facebook, and then make entries as cancer treatments and new cycling goals take shape.

In regards to my most recent stay at Swedish Medical Center; I was admitted on May 12 and released on May 16. I would say this admission was just like all of my past admissions for extreme, intractable pain and vomiting, but I feel like we made some progress as far as a plan for cancer care moving forward when a hospital admission is required. I want to make clear that this is not a negative reflection of any physicians or nursing staff from past admissions. It is just that my cancer and treatment plan is complicated. The main takeaway from this visit, is that now we have a baseline as far as medications and treatment when a hospital admission is necessary to get me turned around. The doctors at this point, think that my pain in these cases is more likely due to scar tissue and muscular/bone “trauma”. This is where they have had to crack my chest and/or go into my thoracic area to remove tumors. When this pain presents itself, it gets so severe, it makes me sick to the point that I am vomiting every 15-20 minutes. It is brutal and once this starts, I have to say I think the vomiting and constant nausea is worse than the pain. So now, instead of guessing what will work, we have a baseline to start with that takes into account my cancer treatment medications and my tolerance as far as pain medication and time intervals and dosages. Now I will meet with my oncologist and pain doctor to discuss the hospitalization protocol and my cancer/pain treatment long term. These appointments will take place this upcoming week, so I will update the blog as soon as I know what is happening.

Take care all, and Just Keep Moving!

KG