Well… shit. Sorry it’s been radio silent. As usual, no news is good news. I think my last update was in February. How interesting, since it feels like February outside right NOW!!! Coincidence….

I’ve been on the same chemo regimen since February. I have been getting vectiBITCH (vectibix or panitumumab for the intellects) every other week at South County Siteman. It has been keeping things at bay, so that’s fantastic. I have maintained my patient status with Sarah Cannon Tennessee Oncology (Nashville). I continue to see them every 4-6 months. They keep tabs on my current treatment, scans and test results. A molecular team reviews everything and looks for possible clinical trials or drug development matches. It is my way of keeping my options open and a sort of backup plan. We really just like to go to Nashville to eat and drink… even the Canadians come to see us there.

Over the summer Kim and I drove an RV up to Montana for a week and then carried on up to Banff, Alberta. We spent some time with my family. I got to do a little fly fishing and we were very happy to squeeze in some golf where we could (as often as possible). When I am cured of cancer I will join the LPGA.

Hmm, what else can I report.

Things have remained pretty consistent on my end. I get chemo. I get infections. I get fevers. I get my bile duct stent changed (more often than I’d like to). I’ve spent a few nights in the hospital. It’s really just the same old story. Luckily, I can tell pretty quickly when things are going awry and I have such excellent care here. As long as Kim doesn’t take a sleeping pill on the same night I am about to spike a ridiculous fever, I’m okay. LOL. My bile duct stent is a bit of a pain, hoping to figure out a longer term solution in future.

My most recent scans (MRI/CT) have looked similar to how they have in past, not much to see or mention. We usually compare these to my liquid biopsy results (Guardant360) in order to decide our next course. Unfortunately, my most recent Guardant revealed three previous mutations have returned (see below if you’re a nerd). This simply indicates that “something is going on”. This will now prompt a PET scan and hopefully we can figure out the what and where. I’ll likely be having drugs added back into my current regimen. We’ll see.

For the wizards in the group, here’s what my Guardant360 Report looks like now… Good luck interpreting this. And good luck with the Wordle today.

Detected Alteration(s) / Biomarker(s) / % cfDNA or Amp

APC R876* 0.6%

TP53 R248Q 0.5%

TP53 P128fs 0.3%

FGFR2 P700P 0.2% Synonymous Alteration

TP53 K132M ND (Not Detected)

Anywho, I’ll get back to you when I know more about what is going on. Cheers!! Be well. Happy Halloween.

ILMMEZ

ILMCT

Dry January is officially over. Yay!!

I just passed my 8 year anniversary of diagnosis on January 28th… cancerversary, good times.

Hmm. Where to start…

I’ll skip a lot of the BS. I had a little chemo break from September to December. This was due to little infections and a crazy thing called Covid (I finally got the VID in October, while traveling on a cruise ship). I assume that’s where a lot of other people got covid too, but I’m just going off of the sounds of sniffing, sneezing and coughing around me at that time:

I’ve healed from that, had MRI/CT scans in late November to see where we were at with things. It turns out, that because I was not on treatment, things have taken the opportunity to show right back up in my liver where they always do, hence “Groundhog Day”. There’s a spot right next to my fancy bile duct (root of all problems). I had a PET scan in December to get a better look at things. Turns out, it’s all real and active disease and will need some addressing. I opted to start chemo again, FOLFIRI + Vectibix (5FU, Irinitecan, & Panitumumab). We had also reached out to Radiation Oncology for a consult. As of now, I’ve had three chemo treatments. I met with Dr. Samson in the radiation oncology department. She went over the limited options and the risks. This area has been problematic and will be very tricky to treat, without causing damage to the areas in close proximity which have been treated twice with radiation in the last few years.

I went in mid January to get radiation “mapping” done. Mapping, is where they do some additional imaging to see where EXACTLY they need to direct treatment beams. In my case, they have you lay down and they create a mould or cradle around your body to keep you in this perfect position. They often create “marks”, using an ink pen and tape over these crosshair marks to preserve them for the next few weeks. Sometimes they will use a small needle to tattoo these areas, in order to line things back up for future appointments. By doing all of this they can very accurately position the patient the EXACT same way for each treatment.

I have started proton radiation today (Feb 6). I’ll have treatment everyday this week (short course radiation), for five total treatments. Hopefully they can get it all. I’ve been learning a lot more of the severity of my current issue. I guess it being so close to previously radiation treated areas can increase risk for necrosis to the tissue and in turn lead to liver failure. It’s very important to focus this treatment on the tumor, but equally important to not cause any major damage to the surrounding area as to effect any liver function or lead to any “loss” of function or cause tissue death. I learned scarring is okay, necrosis is bad, very bad. Don’t die liver:

So with that all said, we’ll lob up another “Hail Mary” and hope that with a little luck it gets hit somewhere in fair play and not “fouled off”. If you know what I mean. Fouled off or fouled up. Ha.

I’ve been learning about this bile duct area and how it’s very important for draining things and of course your arteries and veins are very near this area as well. Unfortunately, surgery is not an option this time, nor will it be in future. It has been my “precious real estate”, that has been slowly becoming less and less with all of these surgeries and radiation treatments. They removed over 75% of my liver in the first year. Yes, some regenerates, but you still need some of that original tissue. That’s what we’re trying to preserve. The transplant option is off the table as well, as I continue to have lymph node involvement outside of the liver.

I’ve been riding out these miracles and good luck and good vibes and faith from everyone, so I plan on continuing to do so. I have full confidence in my “team”. I’ve been really enjoying getting to spend all of this time traveling with Kim and getting to see and meet new and old friends and spending time with family. Hoping for lots more time and travel in future. Stay tuned kids.

In the words of Lizzo:

I’m not the girl I was or used to be, bitch, I might be better…

From radiation of course… and maybe cancer in general.

Be positive, not just “body positive”.

Cheers.

J

Howdy!! Sit down, get a cocktail (or ten) and enjoy. I’m about to slip you a long one.

Since April… things have changed slightly or a lot. As I recall, I had surgery to remove a lymph node back then, and a soft tissue nodule. Breaking NEWS: I survived…

I also completed something amazing. My quest for American citizenship has finally ended. Early April, I was sworn in as an American citizen. I have successfully naturalized. I did not have to give up my Canadian passport, but I took an oath to one country “The United States of America”. I do not hold dual citizenship. I am now considered American. If by chance I needed to return to Canada, I can. I just use a new passport. WELCOME TO AMERICA:

I had my bile duct stent changed 4 times in 3 weeks in the spring. Normally, I was having this done every 12 weeks or so. We have had to bump this up to every 10 weeks now, because I seemed to have had multiple infections and other BS that cut our trip short in March and put me in and out of the hospital numerous times from March through May.

In June, it was found that I had a small cluster of lesions in my liver (growing along one of my surgical margins I believe). Lucky for me (not really), I went back onto FOLFIRI chemo, with Avastin, in July. I had scans in mid August, after three treatments, and we saw that the little cluster had shrunk some. This was pretty exciting news. TINY CLUSTERS!!!

Near the end of August, Kim and I spread our wings and headed to Italy (with Melissa and Marsha). We discovered that Melissa missed her calling:

We also consumed countless carbs and found a couple of new LOVES:

Upon our return, I resumed my delicious chemo. I also travelled down to the thriving metropolis of Springfield, MO for my FightCRC Ambassador training mid September. It was there that I learned my new role for eternity. With my head high and my pants low (at times), I realized that the only way to combat colon cancer is by getting the word out and spreading the knowledge and education that I have stumbled upon throughout this bee-otch of a disease.

I met some pretty amazing individuals, that have in some way had their lives changed by colon cancer. The FightCRC staff is simply amazing. They humbly connected us patients and care givers and informed us of their role in the colon cancer community. I am so thankful for everyone I met over this amazing weekend. I felt pretty terrible while I was there, as I had just had chemo on Wednesday. The effects of chemo are starting to take their toll on my tired ass body. LOL. I actually got sick for the first time from chemo on that Friday. WTF. Not bad for six plus years of poison off and on.

From Springfield I returned to St. Louis, with numerous new friends for life. We were now back to chemo and work (Kim-haha). I is retired. LOL. We learned of new possible options for colorectal patients. Years ago, I read about places in Europe that were performing liver transplants on colon cancer patients. Guess what… they have started doing them here in the United States over the last couple of years. They have actually performed a few transplants here in the STL. With pretty damn good success, I might add. Either way, I had a consult with a doctor at Barnes/WashU to see if I could someday be a candidate for liver transplant.

We took in a lot of information and learned how thoroughly these candidates are screened for this process and how they are often ruled out. Patients to be considered must have LIVER ONLY disease. As you know, FROM ABOVE, that I have had a couple of lymph node involvements in the last year. Last node was removed in April (23rd?). I found out that if I do not have anything else come up OUTSIDE of my liver, I “could be considered” a candidate for transplant in April 2022. One year from my last occurring lymph node tumor. This was pretty exciting news, as I believe this to be “curative intent”. Meaning, if this transplant surgery was performed, I could possibly be cancer free, provided I had no cancer elsewhere.

Liver transplant surgery requires some pretty taxing steps. You receive a liver from an individual who is no longer living or has recently been removed from life support and had organs harvested in a timely fashion. This liver is then placed in a sort of “infirmary”, where it is given circulated nutrients (like sugar-which is perfect, since I live off of gummy bears) and basically whatever needed to keep it healthy until matched transplant. Crazy right? Recovery takes time in the hospital, as you are then given anti-rejection drugs. You basically need your own immune system to accept this new organ and not attack it. Hence the anti-rejection drugs… with a lengthy recovery in the hospital you are later released and hopefully can continue to recover from this process for a few months, including being very careful to not succumb to infections and complications, as your immune system is VERY COMPROMISED.

Over time, a patient receiving a liver could hopefully live a long time. However, if by chance you had any cancer growing outside of the liver (undetected), it could then kick into high gear, as your immune system could not do it’s job, while being somewhat “sedated” during this time of hopeful anti-rejection. This is a big risk and certainly something to be considered if I were ever a candidate.

As I mentioned, at this time I’m not the best candidate. I’ll revisit with the consult team later, provided I do not grow any damn tumors outside of the liver.

We attended a KC Chiefs game. It’s always bittersweet to attend an NFL game in October as it’s their Crucial Catch, cancer awareness month. But fun fun fun none the less!!!!

PS, the Chiefs got their asses kicked by Buffalo and there was a major storm delay, but we had a blast at the game with friends and of course made new friends that weekend in the Walter family. Barb, we love you. Mike, keep on trucking with me. We can do this. Kids, we will kick your asses at Kubb next year too. LOL.

It’s now November. We just returned from a lovely time in the Turks and Caicos. If you have the opportunity to go, do it. The water rivals some of that of Tahiti. Simply breathtaking, constantly. It may have been the storms around, but it made for the perfect backdrop of paradise, while again we were met with old friends and new. We love meeting new people on these trips. Genuinely amazing people cross our paths on these trips, we are so thankful for that.

We returned from Turks and quickly we were thrust into reality, as it was time for scans. Unfortunately, my scans showed that the shrinking cluster f&#k of 3 nodules, was actually four and they had grown since August. Sneaky bastards. They also made note of a lymph node located in front of the liver.

We scheduled a PET scan Wednesday, to determine if this lymph node outside the liver was going to reset my clock for possible liver transplant or not. My beekeeping buddy (Jennifer), brought us the good news Wednesday night, that preliminary findings were positive. The node outside the liver was not cancerous. Yahoo.

However, the growth in the liver will need addressing. It’s not crazy growth (like my ass the past two years), but it’s growth. Dr. Tan has decided to add my old nemesis Panitumumab (Vectibix) back to my regimen in future (Nov. 30th). Watch out, the skin rash is coming back!!! Oh and teen wolf. Oh well. No big. In the grand scheme of things, if we can have some response to this drug again, I’m game.

I will also be in touch with departments at the NIH (Maryland) and Sarah Cannon (Nashville-I was there in January). I’m going to inquire about possible clinical trials at both and try to find some other options to have in future. Stay tuned on that. Always good to have a few “planes on the runway”.

Thank you for your constant support and kind words as always.

If anyone is looking for more information on colon cancer I’m a big fan of FIGHTCRC. We are hoping to find a cure for colon cancer together. There are too many lives lost by this disease. Get your ass checked. Schedule your colonoscopy if it’s time. The age has been reduced from 50 to 45. If you’re feeling bad or strange, you know your body best, see your doctor. I can only make so many jokes on these blogs, colon cancer sucks guys, trust me. Ha.

Happy holidays to everyone.

CHEERS.

ILM BJD

<3

Home

Well, it seems like it’s been a very long time since I did an update. As usual, no news is good news. I started composing this glorious update quite awhile back, but the process of getting things together this time has taken awhile. I’ve made numerous edits, so please bear with me as I may have missed some past and present tenses.

I took a little jaunt down to Tennessee at the end of January to get “another opinion”. I visited Sarah Cannon in Nashville (Tennessee Oncology). I’m just trying to keep all of my options open. If treatment here isn’t an option in future, I would consider seeking alternative treatments there or wherever suits me best. They have different clinical trial options and create some personalized medicines. Pretty interesting stuff, but as I said, it was just a visit (and an excuse to bring back some delicious beer).

I had scans at the end of February and another Guardant360 blood biopsy. My previous scans and blood biopsy were in early January. We were watching a new mutation that had popped up in my blood work in January. My February MRI/CT scan results came back and looked good. No evidence of metastatic cancer. Normally, this is exciting and great news, but I have learned not to celebrate too early (opposite of my life before cancer-LOL). My scans are now just a “piece” of the puzzle. When paired with my other blood work, mainly this Guardant360 blood biopsy test, we usually have a better picture going forward.

Now, for the “geek” in you, I’m adding a visual of what these Guardant360 results look like (minimal-the report is such longer and explains a lot more). You can see that currently I have an APC R876 mutation at a whopping 0.2%. Trust me it’s real, even at 0.2%. It also shows mutations detected all the way back to August 2015. I have had another one drawn since, just this past week (April 6th). Stay tuned.

My Guardant results showed that the “new” mutation that was detected in my blood in January (TP53 R248Q) was now gone (likely a nonsense mutation, we’ll call it). However, an old friend (APC R876) was picked up at 0.2% (that’s how sensitive this test is). This is one of my four original mutations from when I was diagnosed way back in 2015. This has happened in past (aka spring/summer 2020 and summer 2018) and indicates that things are likely requiring some attention again.

This mutation “finding” prompted us to schedule a PET scan mid March. The PET showed a lymph node (or as some say lymph NOID-you know who you are) in the liver area that contains disease. Luckily, I was scheduled to have my bile duct stent replaced (ERCP) a few days after this scan and if you can believe it, the lymph node could be biopsied endoscopically while they were changing my stent. That’s some fancy shit or luck. It was biopsied simply to confirm it is in fact cancer for future treatment possibilities, insurance, etc.. Results came back a day or so later, it is in fact consistent with my original tumor mutation. Poorly differentiated adenocarcinoma… what a mouthful. More than a mouthful is a waste proves true again, here? Moral of the story, this will need to be addressed.

I had to wait to hear what the Tumor Board at Siteman/Barnes/WashU would suggest and ultimately decide. They met at the beginning of last week (March 29th). Patience is a pain in the ass, isn’t that the saying?

The Tumor Board discussed if surgery was an option (Dr. Hawkins), if SBRT (radiation therapy-Dr. Henke) is a better option or if just changing my chemo back to something stronger could zap it (since I’ve just been on maintenance chemo-clearly it’s not “maintaining” jack sh*t). Having survived over 6 years now, my medical history is not the easiest thing to discuss. They consider all things done in the past and of course realize that my anatomy has changed significantly, with having had multiple surgeries (and now lots of scar tissue). The “lay of the land” is not like it used to be. I think it’s tricky to look at my scans now and they can’t always be perfect each time if something isn’t standing out or significantly larger by comparison to past scans, hence why sometimes it takes a little digging to get to the bottom of these things.

I’ve learned treating cancer is not always cut and dry. There is no right and wrong at times, especially when dealing with my cancer. There are options, and then trying to figure out what is optimal. The grey areas are rather large, like my ass (thanks covid). What works for me or someone else may not for others. It’s a process… and you have to navigate it very carefully. I’m trying not to limit myself, but always trying to be proactive and as involved in decision making as I can be, but always deflecting to the specialists I so greatly respect and trust.

Now, with all of that said, I finally have a direction moving forward. Apparently, this little lymph node is very close to where we did radiation therapy last year (within 1-2cm I think she said). It can be tricky to treat an area so close to where they treated in past. From a surgical view, this area has also had a duct reconstructed twice and has a lot of scar tissue surrounding it and again, the anatomy being different poses some added difficulty and increases risks of complications or nicking things or bleeding. You just never know. We have discussed these two options extensively and have decided to go UNDER THE KNIFE. Surgery is expected in the next couple of weeks, so should happen in April sometime. I fully trust these two in making this decision. Neither one is easy, but we figure to try this and if we run into any issues then we can fall back on the other. This surgery will be more difficult than the last one, not as bad as my big ones in years past. Just re-opening another scar… No big deal. LOL.

I hope everyone is surviving (just keep on swimming). This pandemic has not been easy. I’m grateful for friends, family and Kim for being sure I’m taken care of and surrounded with a safe environment at all times. I will say, I sure feel less silly wearing a mask now in public settings, sorry everyone. When I was the only one, I felt like such a spectacle. LOL.

There comes a time to say goodbye and the time is now.

Go On Git!

Go On Git diseased lymph node

Are you a node or a noid?

I find you A NOID-ing

Be gone by way of surgery April 23rd

You pesky little turd

Go On Git Little Shit!

Cheers!!

Written Friday, sorry just now posting…

Ahhh… where to start… where did we leave off?

A little recap/refresher:

In May I was scheduled for scans at the end of the month, when my liquid biopsy (guardant360) mid month detected some mutations in my blood. Some of the mutations were consistent with my original tumor biology. We saw this two years ago when I had a reoccurrence. Scans were bumped up and we saw a single spot on my liver. In June I underwent 5 radiation treatments (SBRT). At the end of June I started back up on maintenance chemo (5FU pump only), every other Tuesday. I had been off chemo since November. And let me tell you, it was GLORIOUS!!!!

Early August I had scans to check how things were going. Good news, the spot we treated with radiation appeared to be D-E-D (dead). Treatment successful, thank you Dr Henke (undercover rockstar). With the good news of nothing else showing up, we decided to follow up with another liquid biopsy. This was to check that those pesky mutations that were detected in May were now resolved and hopefully undetectable. 

This proved to be wishful thinking. Lol. The liquid biopsy results were astonishing. I’ve always wanted to use that word. The mutations detected in May had increased 10 fold (0.3% to 3%). I’ve never even had a reading over 1%. Quite an increase. Thank God we weren’t just satisfied with the scan results. 

This increase prompted the scheduling of a PET scan, at the end of August, in order to look for any other active disease. Results from the PET scan showed that I had a new diseased lymph node near the pancreas and a soft tissue nodule just below my sternum, right at the surface near my skin (hence soft tissue). You could actually feel it. Like a little, shitty marble. My previous MRI scan had missed the lymph node or rather whoever reviewed it. It happens. 

The marble: I had asked my doctor about this in May or June, as it was a little uncomfortable. I thought I had pulled something. We passed it off as scar tissue when it was inspected. Apparently, when I had a cryoablation in 2016 it may have left behind a single cell of cancer when the probe was removed from that area. Then it slowly grew until now. Who knew?

Anywho, after having my case reviewed by the tumor board of the best of the bests, they decided the best course of action was dynamite… I mean surgery. 

I had to have a few other appointments between now and back then. I’m scheduled to have to lymph node and marble removed October 6th. I will be chopped back open from sternum to belly button. Right along my current scar. They’ll have to deal with getting around some scar tissue and other abnormalities. I think they have to get under or around the intestines to access the pancreatic area. Hence, I will be in the hospital after for 3-5 days recovering. Pretty simple compared to my other surgeries I’ve have. Ha.

This morning I’m waiting to get my presurgical covid test. It’s always nice to have a medical instrument you could pole vault with twisted up your nose in the early morning hours. I feel like they could reach through the sun roof with that thing. Thank God these aren’t performed rectally. Which reminds me of an old joke my friend used to tell: “What’s the difference between a rectal thermometer and an oral thermometer? The taste.” Chew on that. 

Back to serious (POCUS), I’ve been consulting with Dr Hawkins for this surgery again. We’ve had a long history now. I have to make up excuses like these nodules to see him now. Jk. He’s a pro. I’m sure he’ll perform the surgery with his eyes closed, as usual. I’m quite confident in his abilities. I feel bad he’ll have to cut and dig through my covid lard to get to these things. Poor chap. Covid cottage cheese. I’ll resume maintenance chemo in November if all goes well. Good times. 

That’s it, that’s all. Hope you’re all surviving this year. Liquor sales are up and so can be your “spirits”, if you so choose. 

Take care. 

Thanks for your encouragement, support and thoughts. Never a dull moment and hopefully never a dull scalpel.

Cheers!!

Let me re-introduce myself, since it’s been 8 months since my last confession. What a twat waffle I’ve been, keeping everyone in the dark since September. I’m sooooo sorry. I could have sworn I had done an update in the early spring, but I don’t see one. Sorry guys. Where to start?

I guess first and foremost, I hope everyone is staying safe during this pandemic or the emerging from said pandemic. I realize it’s been tough. A lot of people have been forced into a world like those of us that are “sick” and have to be very careful of who and what we touch everyday. Wearing a mask is the new black. I always felt stupid wearing a mask in public. It always seemed to draw so much attention. Now, if you’re not wearing a mask, you ain’t cool… or you’re not being considerate of the rest of the world anyway. Welcome to my life… but seriously, I hope everyone is doing okay. It’s impossible not to be effected by all of this, health wise, home wise or job wise. Thank you to everyone that has had to work through this and to those who have had to stay home. Neither situation is optimal.

So, in February (2020) I found out my scans were good. They looked good in the fall (2019) also; my 16 months of chemo had paid off and potentially cleared things up. I was NED (no evidence of disease) finally. NED is a colorectal cancer patients dream. In five years I have achieved this only twice, unfortunately both periods were pretty short lived. In 2017 for about 3 months and this time for maybe 5 months. Either way, I have not had any chemo since the first week of November 2019. Having a break is amazing, this stuff can be very hard on your body and the cumulative effects are likely “not good”. Ha.

Well party people, it’s time. I’m coming out of retirement. Just like there’s no crying in baseball, there is no remission in Stage 4 colon cancer; at least not for me. I had some blood work done this month and things are a changing. My liquid biopsy (Guardant360-blood biopsy test I have every few months to monitor my disease) showed my old disease rearing it’s shitty head again. It appears to be the same mutations that came up July 2018, when I resumed treatment at that time. The good news, my cancer has not changed or mutated in 5 years, but it’s a persistent little beeotch. Tag team, back again… With the old mutation being picked up in my liquid biopsy this basically indicates possible reoccurrence of disease and circulating cancer cells. This indication prompted my scans, scheduled for the end of May, to be bumped up a couple of weeks. Sure as shit… there was a new, little 9mm spot on my liver.

Long story short, over the last couple of weeks I’ve been in contact with the A-team. They and their van have determined the best course of action is SBRT RADIATION, yum yum (Stereotactic Body Radiation Therapy). In my case, this is a radiation that can basically be done very accurately. Using MRI guided technique to do mad damage to my lesion, but not to the rest of my amazing body. I went in yesterday for a consult and planning appointment. It was delightful. I met with Dr. Henke in the radiation dept and a few cats from her team. She’s awesome. She seems very confident and wizardly smart. We’ll just blast this little spot and then possibly resume some “light” chemo afterward to cleanup anything else that might be tooling around. I’m scheduled to start next Friday (June 5th), with 3-5 treatments (we’ll see what they decide). I think treatments can be anywhere from 1-1.5 hours. I was given three little dot tattoos (like Phoebe’s) for markings of where exactly to line up for each treatment. Pretty interesting stuff. Because they can be pretty accurate with this radiation treatment side effects should be minimal, hopefully. These could include some fatigue and nausea. I’ve been prepared with information and medication for all that… so I should be good.

The break I’ve had since November has been amazing. I was able to do some travel in December and January. Kim and I hit the Galapagos Islands in December and then in January we visited beautiful Scandinavia. Both were terrible. JK. Both trips were absolutely amazing. The animals in the Galapagos were incredible and our travels to Norway, etc., were great due to the company we had, the hospitality of the people and just the places in general, so gorgeous. We also fell back in love with Gin and Tonics, as they are quite popular there. They have multiple little spins on those. Delish.

Kim had her knee replaced in March and is doing great. She’s like a new woman. She’s been back at it, cleaning and working in the yard.

I was lucky enough to put on the coveted Covid 19… or close to that. I did a whole 30 diet in February and was finally looking/feeling good… then quarantine hit and BAM!! No more gym, cookies for every meal, and candy galore. It happens.

I mostly spend my days vacuuming wearing old muddy flip flops… as to undo all of my good work… and feel puzzled all the same. Why isn’t the vacuum working? Oh… right… because I’m tracking dry mud everywhere while doing it… sooooo smart. Poor Kim.

We’ve been transforming our back yard to hopefully have a garden at some point. We’ve built new garden boxes and created some flower beds. Kim has been doing a bunch of planting, it looks amazing. There’s been a lot of excitement with random wildlife in the area. My bees are living the life.

Hopefully in time things can get a little more back to normal so we can all start hanging out with family and friends again. Until then, I hope everyone is hanging in there. Thank you, as always, for your thoughts, prayers and kind words. Stay safe folks. Cheers!

ILMoRBL

September 28, 2019

It’s been awhile since my last update. I just didn’t have much to report until now… and that’s usually a good thing. No news is good news? Today, “news” is “good news”, I’m warning you:

I just had scans mid September, we had been waiting on some additional information. They had been watching a spot on my bile duct since last year, still there in June 2019 scans and this past scan in Sept. We had been pondering surgery recently, if it was “something” of concern. This week I had a PET scan to see if surgery was an option, as it would be an EXTREMELY risky surgery. I don’t think anyone has had their bile duct reconstructed a third time. Once, twice, three times a dead lady…

Anyway, the PET scan results came back and the meeting of “The Minds” (tumor board) occurred Thursday. It has been reported that my PET scan came back completely negative. THE GOOD NEGATIVE silly!! Nothing lit up. This is really good. This indicates that currently there is no “active disease”. Am I cured? No. Is there cancer anywhere? Who knows? This does not technically make me NED (no evidence of disease), but I’ll take it. Currently, whatever is on that duct is not active disease (could be scar tissue or something else) and liver lesions from last summer have shrunk and are also not lighting up. If this is confusing to you, I’m sorry, please reach out and I can explain better. Or, go directly to your fridge and get a drink of any kind and celebrate… ha.

In short, I’m doing great!! I’m beyond ecstatic to report this. I had (what we think was) reoccurrence last summer. I started chemo last July (2018) and have been sticking to that since. I think I reported last time that one drug was dropped in June for “good behavior”. With that one drug dropped (Vectibix or VectiBITCH, as I call it), I was able to enjoy my summer. It causes a bunch of skin issues, etc. You have to avoid heat (air and water: showers, hot tub, etc.) and sun, it’s just a real bitch sometimes for people. I didn’t have to deal with that this summer though, so it was nice… especially since we spent two weeks in Terrible Tahiti. JK. What an amazing experience that was. My favorite place we’ve visited to date. I was able to be outside, in the sun and swim in the ocean (the one drug break couldn’t have come at a better time). Here’s a few pics of the resort where we stayed and a little fish we caught and our tattoos we got in Mo’orea (my first-done traditionally: with a stick and a boars tusk). My tattoo is designed specifically for me (one of a kind). Part of the image is supposed to be me and it’s supposed to put all of the earth’s elements into harmony in order to generate healing and strength.

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I’ve picked up some new hobbies over the last year or so: leather working, some wood working, fly fishing, beekeeping, traveling, and there’s that old truck…

Beekeeping has kept me on my toes (literally). I guess you could say I got a little reckless or complacent (aka cocky). I was stung four times in less than a two week period, mainly out of stupidity and bad luck. Stepped on one bee-otch, no where near my hive. I was too lazy to put jeans on another day and the last time I was just “curious”, had to peak in before I went to the gym, but then second guessed myself and crushed a few bees lifting the lid. Needless to say, when you injure or kill them they release pheromones for their friends to attack, lol. That day I took a sting on the neck/jaw and finger wiping it away. Laziness and cockiness didn’t mix there. Ha. Otherwise, the experience was quite amazing and educational. My bees were actually quite docile. It was me, not them, if you know what I mean.

I was able to get Kimballs out to fly fish too, she actually did way better than I did and it was her first time. A natural… like Brat Pitt…

We also added this guy to our brood in May; he’s been a joy and a pain in the ass all the same. Recently, he tested his strength also. He suffered a pretty major complication after a surgery, but with 50/50 odds… I mean, we knew he’d be okay. Especially if I have lived THIS long with far worse statistics. Cute little guy pulled through, thank God.

I also got to spend some quality time with family over the summer, never enough of that. We had peeps from Florida and Canada and celebrated an early 70th with the Salls/Steevens out in Steamboat Springs. It’s been a fun summer.

On the flipside, this year has also been a very challenging one: losing friends I’ve met and made along the way, worrying about and ruling out “fake” spine mets, our beloved dogs having surgeries. We are reminded daily of how precious life is and to enjoy it. It’s unfortunate it sometimes takes an illness to open your eyes and allow you to embrace life. I am thankful for friends and family every day. Mostly, I’m thankful for Kim; she experiences the good and the bad, the highs and the lows. She spoils me with these amazing trips and splits her time with work and attending my treatments with no complaints, she’s just the best!!

I have been very lucky through all of this. I have watched others, who have not been so fortunate. I’m very grateful for where I am right now. I’m always so happy for others, when I hear they have been responding to treatments or they are doing well after surgery or just in general. On the flip side, for those who have passed, I think of them often and of their loved ones. It just makes me thankful for where I am and I am always happy to share my experiences or help others in any way that I can.

Tomorrow, I’ll be riding in Pedal the Cause for the third time (it was a last minute decision this week, as plans changed). I would have never thought I would be here again, four years later.

Cheers folks and I can’t thank you enough for all of your thoughts and prayers, clearly they are working!!!

ILM LR

Howdy peeps. Finally an update, sorry for the delay… I didn’t have much to report and then I get information from scans that requires some further tests or explanation and then I just get lazy or distracted and BOOM!! Months have gone by. Sorry!!

I’ve been getting chemo (FOLFIRI+vectibix) every other week since July. Good times… At least my AFLAC cancer benefit is going STRONG!!!! Cha ching! Seriously, if you have a family history of cancer (or are accident prone) this is an amazing benefit. I know that AFLAC wishes I would stop “filing claims”, but they just pay out so well!!

I had CT and MRI scans in mid January. They both showed that one of the two lesions on my liver had shrunk some and the MRI also indicated that the L2 spine lesion that was seen back in June was still there… but wait… there’s more. And it was a little bigger, like my ass. JK. I’ve learned a lot about CT vs MRI vs PET, but in general they all pick up different things and have differing sensitivities.

This past summer after they saw that lesion on the spine I sought out some other opinions in different states, in order to determine what treatment would be best at that time. I also asked each doctor if they were concerned about this spine lesion. Neither doctor was concerned about it, nor thought it was actually disease (cancer). People seemed to think it was a scar or an old injury (which I found strange because it wasn’t on MRI’s from 2015/2016, but what do I know?).

Back to mid January: the lesion had grown since this summer. Again, people didn’t seem alarmed, as colon cancer doesn’t normally go to the bones. I was able to get a muscular skeletal radiologist to review the MRI. The radiologist this time recommended a biopsy, as in his opinion, he was pretty convinced this was actually metastatic disease (meaning cancer had spread). A biopsy would not only confirm what is going on there, but if it confirmed things as being cancer it would also support any treatment options for insurance purposes (like radiation). There was a lot of back and forth and what not in order to get this all set up.

I had the spine biopsy done in mid February. The results were fantastic. It was NOT metastatic disease, but actually just a hemangioma. Hemangiomas on the spine are benign tumors usually found by accident and are nothing really to worry about, so this is great news!! It’s just a collection of blood vessels, no big deal. A huge relief. Take that AFLAC, more claims!!!

I had scans at the end of March to monitor things. Everything looked good still. The two lesions on my liver have basically disappeared, one is barely noticeable. The plan is to stay the course on this chemo regimen for a few more months. I’ll be scanned again at the end of June, I’ll have blood tests to monitor things too. Hopefully if things continue to look okay I can maybe drop off one of my drugs from my current regimen. Then maybe I’ll have more hair or less hair or be able to be in the heat or sun for the summer. Fingers crossed, ha.

Again, I apologize for the lack of updates and what not. I had been putting off an update waiting to get scans reviewed and then appointments for biopsy and then results and then more scans. In January things sounded pretty bad and then voila, it’s February and it’s not so bad at all. I feel like I dodged a bullet or was the lucky recipient of one heck of a miracle.

While I was very lucky recently, others I had met and became friends with through this journey were not as fortunate. Sadly, a couple of my friends passed away in January and February. It’s hard to lose friends that you meet along the way, but I wouldn’t trade it for anything. They are people that understand what you go through and you have a common bond with, a pretty easy, immediate connection.

On lighter notes, here are some other items I had intended for past updates in no particular order:

The rash on my face is random, my skin is so freakin’ dry it’s ridiculous. My head hair is growing ever so slowly… and strangely. I don’t know if there’s going to be a curl to it or what. It’s just weird right now, kind of thick on top, not so much on the sides. It’s bizarre.-UPDATE: I shaved it back off, it looked ridiculous and no one was kind enough to tell me. LOL.

During all of this drama in January/February we were also having to get little Lucy’s knees fixed. We found out in January that she has two torn ACL’s (or CCL in dogs). One is torn completely as we suspected, but then we were surprised to find out that the other one is partially torn (and would likely tear in near future-they are psychics there you know). So we had both repaired at the end of February. Poor little Lu. She’s doing great now though. She’s about 6 weeks out from surgery, she was walking on both legs the day after surgery. It was pretty pathetic for awhile there, but now it’s going to be tough to contain her again soon.

And if that wasn’t enough, Kimballs had been having some wrist issues. I guess she had fractured it a couple of years ago and didn’t know it and it was causing damage to the area over time and eventually a lot of discomfort. She had a surgery two weeks after Lucy to fix that little gem. They had to repair and move around some ruptured tendons/ligaments. She is in a splint up to her armpit or at least she’s still supposed to be. She takes a lot of breaks. LOL. This household was a mess…. well, except for Steve and Frank. They are fine. Boys rule, girls drool. Damn them.

Look alikes:

Derek Carr

Richie Tenenbaum

Cheers all!!!

Howdy, I didn’t send an update in Sept. as it was kind of boring, so I figured I’d wait until something exciting happened… I’m still waiting, JK.

I had a CT scan right before we headed on our recent European vacation. There wasn’t much to report, which is a good thing. I had been waiting to get some additional comparisons to previous scans. They didn’t see anything new showing up after 5 treatments (which is GREAT) and the areas they were watching didn’t reveal anything exciting.

Lymph nodes they were watching were difficult to visualize and others were ones that lit up with disease on my July PET scan, but were never enlarged. So it’s a difficult place to be as the CT scans don’t show much. We’ve decided to do another PET scan mid-November. This should show any “active” disease and be a better comparison to Julys PET. I’m hopeful by then, after 8 treatments, we’ll have a better idea as to how things are actually working.

 

Fast forward to now (12-2-18):

I had my other PET scan just before Thanksgiving and learned that nothing showed up. This treatment they have me on appears to be working well. No active disease was detected. This is great news, best news possible actually. A Christmas miracle… early…

The plan now is to just stay the course. Keep on with these treatments through December and I’ll have scans again in early January.

I don’t know what treatment I’m on now, I’m no mathemagician, but some of these side effects are pretty amazing. My hair on my head was thinning in August… so I shaved it off. Now my eyelashes are growing and growing and growing. They look ridiculous and have to be trimmed constantly. My eyebrows, or eyebrow rather, is growing out of control also. Hypertrichosis??? I think that’s a side effect of one of my drugs. It’s so amazing. I think my eyebrows are growing into my hairline everywhere (up, down, towards the ears). It’s out of control.

I think people are very confused on whether I’m a man or a woman or transitioning or what? I’m a little confused myself… the long eyelashes look like I have mascara and eyeliner on at times… just a woman living in a constant state of drag… it’s great. My facial (and body) rash is often marvelous. From  a distance I have the red glow of an alcoholic or maybe a light sunburn, but up close I have the complexion of a teenager.

The rash has actually improved significantly and isn’t nearly as bad as it was. Avoiding the heat and the sun were helpful in August and September, it’s nice now that it’s cooled off. Oh, and I found this kiosk at the mall. It’s very helpful:

I am just trying to combat the dry skin now. It’s always a white Christmas (and fall, and Thanksgiving) at my house…

To Wong Foo Thanks for Everything-Jim MacDonald… (To 5-FU Thanks for Everything!! Ha)…

Soon, I’ll be playing the part of the bearded lady at the circus…

or riding around on the roof of a van…

 

I can no longer hide that I have cancer, not that I really care (I’m pretty lucky-I’ve been eased in to this). People see me at the grocery store and give me a look of understanding or sympathy.  I usually just look back and inform them that “Lice is a beach”, so they maybe leave thinking I’m actually a school teacher or found myself in a Billy Madisen-like situation or caught lice from one of my kids at home. I skipped the Rid and went the Wahl shaver route instead… it could have happened.

Not much else to say. I’ll keep you posted on how scans look in January. I have my bile duct stent replaced tomorrow. I have to get it replaced every 3 months, for how long I do not know. Time will tell… It’s a pretty easy in and out procedure (sort of like when you go for an endoscopy), not to worry it’s  accessed via the “upper” GI.

Enough BS for today. I guess that’s all to report. Cheers and happy holidays to everyone.

 

 

 

 

 

or it gets the rash again….

I’m taking this post to the NEXT LEVEL… of inappropriate and crass (this is your final warning).

This face rash is soooo SEX-Y!! I  saw my Dermatologist yesterday morning though, so I’m hopeful my new regimen will tone this $hit down. And… more good news, I can no longer “whip my hair back and forth”. Now I stand in the shower singing “Nothing Compares To You” all day, like Sinead O’Connor. Or Prince (don’t hate), she would probably actually like this Pope; I saw he just made the first papal visit to Ireland in forever, go Francis!! He may have been going there to hide from his most recent accusations of knowledge, ruh roh.

I think you can click on this IMG_4249 on desktop to see a little clip… may not work on a phone… sorry.

IMG_4249

Looking back, it seems absolutely amazing that the content above could ever be contained in one of my blog posts-FOCUS-POCUS!

My second round was far less exciting than the first one. No infections or bacterial infection death threats this time. I was a little tired for a few days, very little nausea (easily managed with pills). It’s more like hangover nausea or hunger, like when you are craving a freaking SLINGER or some other 3000 calorie meal, consisting of 110% carbs. I try to mix it up. With hot carbs and cold carbs. Ice cream is still a staple. I pepper in foods high in Magnesium (as Vectibix depletes your Mg stores). I “salt in” lots of high protein foods and drinks too, don’t worry. I hope this is making you hungry or pregnant…

I’ve had my third round of this FOLFIRI w/ Vectibix yesterday. All good so far. I’ll skate through this one and have another treatment on September 11th, then I’ll have a scan at the end of the month. Hopefully, things will look good. In my “expert” opinion, I think I’m better. I honestly do feel better, for the real record. My blood work looks pretty good. My CEA has gone down below 1 again, mine never gets very high, but still… I got to the gym twice a week over the last few weeks  (I have to be honest, the Friday after chemo I mostly did lay down exercises, but still…. FYI-Katie McCrary at Nutriformance is AWESOME!!! I can say that on days when I get to lay down, on other days… I think she is the devil…)

Time to play… who wore it best?

Me vs. Liz (my sister-in-law and fellow cancer survivor)

I was kind enough to donate my “strands” to City of Kirkwood: Sewer Lateral & she probably did the right thing, donating to  Locks of Love. If there were a Lack of Locks of Love I could have done that. My pony tail wasn’t even as thick as one of those braids. That Liz, always showing off…

Filmed on location at The Hair Lab (this place is beautiful inside, by the way). Hair and style by the amazing Emily Struckhoff. Videography by You’re Kimming Me Salls and MLE. And lastly, and most importantly, edited by the very talented CHARLIE CAREL (or Chuck Struck)!!!

For your viewing pleasure, presenting: GI JILL…

Making gastrointestinal  (GI) cancers fun since 2015… ENJOY!!! Puntastic.

IMG_4321

I will NEVER “Ring the bell”… For two reasons: I’ll never give up or quit and I’m pretty much shafted with chemo for life… HA!

Here are a few of the styles we tried out before “taking it down to the bone” as my dad says:

Descriptions: 1. A little off the sides, 2. the Kim Salls, 3.the waterfall gentle mullet, 4. mustache bangs with a twist, 5. Wiese showing us why Emily wears the clippers in the family, 6. the straight across the back (above the hairline-a BIG no no in the hair industry), and a few more along the way…. We were very sad to not incorporate the “Friar Tuck” as that was our ONE that we had both been wanting to do, but that would have required taking it down to the brain (seen below, sported by Take a Knee Tebow):

And for the record, my hair did not all come out at once. It just started thinning rapidly, unfortunately near the front, so… off it went… involuntary mullet action be gone.

PROS and CONS of being BALDeep in Cancer (just to name a few):

Lack of hair PROS-money saved, I’ll finally finish the shampoo bottle before the conditioner, time saver, shaving a head is fun, it doesn’t get cause in the propellers of drones, Steve no longer plays with my hair strings at night.

Lack of hair CONS-shaving a head by yourself is hard (please ignore the extraneous hairs-learning curve: I suck and Kim is blind), Steve now licks my head, gonna be cold in the winter, I’ll probably be called “sir” more than Lovett.

On a serious note: Life is hard. It is unfair at times. I’m a firm believer in getting knocked down 10 times, getting up 11 (even if only on one knee). I’ve probably said it on here before (chemo brain). I’ve met so many amazing people since being diagnosed. I have so many great friends and a loving family. I’m also so lucky to have Kim in my corner… in my actual corner at chemo (I put baby in the corner when we’re there-corner seats rule). Thank you to her for always being there for me, I know it’s not always easy to do this (any of this), but she does it. So thank you Kimballs.

It’s hard to lose someone and very difficult to watch the ones you love suffer. Losing someone can be stretched out over time or it can happen in an instant. Don’t take things for granted. Enjoy each day and when you can’t, do your best to get back on track quickly. Don’t stay in a dark place, look for light, it hides around every corner. Life literally goes on without you. Be kind to everyone, you never know what they are going through.

Thanks, as always, for your support and kind posts and words. I can’t reply on your comments on the actual blog site, but I read every single one, so thank you from the top and bottom of my heart.

IMODB

Been enjoying my summer, and missing my Summer 😉

For anyone curious about our “inspiration” for the video (it’s only mimicking the first 45 seconds-Charlie really did a great job with what we gave him):

Sorry for such a long one, I just don’t have much to say when I’m on boring maintenance chemo I guess.

Cheers!!