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September
5
2019

September 4, 2019_Milestones

It was one year ago today, Sept 4, 2018, when I had surgery to remove the tumor.

About now, one year ago, I was waking up to several harsh new realities.

((Thank you, Laura, for being there that day and so many days since!))

While it’s a little disheartening to mark milestones against my disease, that’s my new normal…and so it goes.

Whiplash!

This last year has been a blur in so many ways—and continues to be a non-stop whirlwind…

After all, it was just last July when I got sick, followed by “the diagnosis” in August and surgery in September.

That was topped off by 4 months of brutal chemo and then a reprieve when I had a ‘clear’ scan in Feb. Of course, it was just a few weeks later when I started having intense pain in my right hip, leading to the revelation that the cancer was back and moving through my body, initiating another 2 months of chemo followed by another ‘clear’ scan.

Now, just six weeks later, the hip pain is back significantly. And while I “don’t know” the cancer is back, I know the cancer is back. At this point, I don’t think it will ever leave with today’s tools/technology, but I DO think we can knock it back until they find something that WILL eliminate it once and for all…

And, the six-week break was not fruitless: I got lots of packing and cleaning done; I saw tons of friends and talked to many more; I planted flowers and pulled weeds – and had more than one discussion on the difference between those two; I broke and then fixed the garden tractor; I sold lots of stuff and gave away even more; and I had a wonderful long weekend in Mpls that culminated in re-connecting with lots and lots and lots of old and new friends, and seeing Iron Maiden again as icing on that cake.

A whole ton of very good memories added to the stack…

Unchartered Waters

I’ll talk to the docs out here this week, then circle back to UM. I’m really rethinking the UM option just because Aurora seems more willing to try new things. If anyone else has recos for a good hospital focused on patient health vs. SOP, I’m open to ideas.

I’m here in WI at least through EO Sept. I have a few more things to sell/give away, but I’m feeling OK where I’m at for now. I also have a sh*t-ton of paperwork to get to, from medical reimbursements to my application for SSDI, etc.

As of today, Sept. 4, I go back for a CT scan Sept. 12 w/ an oncologist follow up early the following week.

Stay tuned for the next thrilling installment!

To contribute financially: https://www.gofundme.com/61jndxs

For this and other installments of my story: https://www.caringbridge.org/visit/mingbrit/journal

 

August
20
2019

Aug 19, 2019--Well, will it or won’t it??? (((((...with contact info...)))))

Most of the last year has been filled with little choice – cancer seems to do that.

Tests, tests and more tests, surgery, chemo, diet/nutrition/exercise, then the other surgery and chemo again, and throughout all of this dealing with the nasty side effects and trying to stay on top of the things I can to keep on being normal.

Everyone reading this has my most sincere and heart-felt thanks for your help and support. Whether it’s warm thoughts and prayers, visits out here, the awesome financial support through my GoFundMe page and all the offers to help with the MN move, this is not a journey I could do alone.

And so, here and now, for the first time in a long, long time, I’m faced with ‘options’ – and no real clear right choice on the path forward...

Basically, the docs out here at Aurora hospital are saying one thing, and the UM docs are saying something different. While both are looking at the same tests and scans, Aurora is willing to try a new immuno-therapy-based treatment. UM says they’d stay with the chemo, since it seems to be working, according to the last scan anyway, and would not move to this immune treatment even if chemo were not working.

Strange, no?

Thanks, American medical establishment…

New Next Steps…

It’s Monday night, Aug. 19, 2019. I see the Aurora doc again tomorrow for bloodwork and then a decision – chemo, immuno treatment or do nothing for now and see what happens.

As of tonight, I don’t know exactly what lies ahead…

Overall, I feel OK, although I still have bad chemo side effects – nerve pain and numbness from the first round and nasty stomach/bowel issues with the new treatment. And I still only have a couple good hours on most days, but that’s still a good start, and I try really hard to make the most of those good hours.

Specifically, I’m working on cleaning, organizing and down-sizing in prep for moving off the farm, which is good regardless of the situation I guess.

And I’m especially glad that many of my prized possessions already are getting into the right hands—I need more people to come grab things they want, like or need…please!!!

Closer and closer, slowly

Anyway, I still plan to get back to MN, closer to more friends and family – I’d been itching to do that even before this all started, so it’s time, but I’m pausing a few weeks to see how things progress.

In the meantime, keep the thoughts and prayers coming, and you can always help with a donation to the GoFundMe page.

Love and thanks to you all for…everything!

 

Oh, some folks have asked for other ways to reach me, so here are a few.

Address               N6147 Coffee Road, Johnson Creek, WI, 53038

Email:                    mingbrit@hotmail.com

Cell/text:             262.349.2416

July
30
2019

July, 2019 -- Back to the Front!

Thursday, July 18, 2019:

Rinse and Repeat

Met with UM today. Though not a surprise, the news was not good. There’s no silver bullet or magic potion here either. They can’t stop my cancer, only try to slow it down. Pretty hard to hear and a lot to digest…

That’s what the Aurora docs had said, too, but the second opinion helped reinforce what I already know—and why it’s important for me to be back in MN.

 

Sunday, July 21, 2019:

Treatment vs. Care

I’m back in WI now after driving six hours in the pouring rain, still trying to absorb everything and make plans, get organized, etc.

As soon as this new diagnosis came up, the Aurora docs talked a lot about ‘treatment’ vs. ‘care’, with the idea that the chemo can be done anywhere, and there’s not as much need for a regimented two-week schedule for chemo. That’s what took me to UM – to get closer to friends and family.

Paradigm shift.

As many of you know, I’m leaving the little Johnson Creek farm and moving back to Minneapolis. Timing is still a big questions, but sooner than later is the rough plan. There’s just a shit-ton of things to work out first, including what to do with all my stuff – I won’t need most of it in Mpls.

Some of my things have a home with friends and family, some stuff will get sold and probably a lot of things will get donated to the local charity. The challenge is to sort through it all and start planning how to get everything where it needs to go. I’ll be calling on some of you to help with this of course. J

Ultimately, being back in MN will be great.  I really do love WI and have several wonderful friends and tons of great memories here, but my heart and most of my loved ones are in MN. I can’t wait to get back there and see more you more often!

Back to the Front!

Going back into more, and essentially un-ending, chemo, it’s hard to predict when I’ll have ‘good’ days, and so I’m trying to plan ways to make the most of them.

I’m not overly compelled to jump out of a plane or scale a mountain, and I have little interest in exotic vacations, etc. The important thing is just to spend time with friends and family, doing normal things.

Being back in Mpls will be great in just about every way. I’ll miss the rolling farm and lake country of WI, but the hum of the city will be a nice change and of course I’ll be much closer to friends and family.

Another HUGE benefit of being back in Mpls is that I’ll be staying with my dear friends Danielle and Adam—she happens to be a nurse practitioner with 20 or so years pof experience, most recently in a ER, and Adam is an acupuncturist, which is one pf the best ways to combat the neuropathy side effects from chemo!

Heavy Lifting

There’s a ton of crap to do to make this all happen. Much of it is me going through stuff deciding what to keep (not much given that I’ll be staying with friends) and what needs to be handed off to specific friends and family.

I’m guessing that St. Vinnie’s will get a very large load of donations from me. But, there will be some moving to do, and I’ll let you all know when that’s planned.  

In the meantime, if anyone needs household stuff or furniture, let me know—I may be able to hook you up!

Continued Thanks and Wonder

This is definitely not how we envisioned this whole thing playing out. It’s been a solid year since I got sick. Even with the cancer diagnosis, we expected it to be pretty easy and straight-forward.

I’m stunned when I think back on what I’ve already been through. YOU who are reading these posts and commenting, reaching out, coming to visit, etc., have made it bearable. I continue to be amazed and humbled by your love and support!

Thank you, thank you, thank you, everyone!!!

If you're inclined to help with ongoing and mounting medical costs, please visit my GoFundMe page.

May
23
2019

May 23, 2019 update: We’re now out of the woods yet

I haven’t updated in a long time because recovery has been slow and painful.

The neuropathy, which was fairly mild during chemo, has gotten much worse. My finger tips are constantly numb, making it very hard to do almost everything – from typing to turning pages in a book to holding on to things without dropping them. At the same time, nearly every footstep feels like walking on 80-grit sandpaper.

And while I’m trying to gain strength and stamina, my appetite is still mostly for shit, and I get winded very easily.

I’ve also developed a wicked shooting pain in my tailbone and left hip area. I had to push back through the hospital bureaucracy to get some relief, which brings us to the latest development…

 

It’s Back.

I finished chemo in mid-January, and a XCT scan at the end of Feb. showed an “all clear”. With the back pain, I had my primary doc order x-ray’s – OK there. Next, my back and spine specialist circled back to the oncology team and ordered a new CT scan in early May 9. That scan showed changes, so we moved to a PET scan May 16. This also showed heightened activity (rapid cellular development, i.e. probably cancer). To confirm, I had a biopsy May 21. Initial results will be back within a couple of days, and I meet with the oncology team May 28 for final confirmation and the new plan of attack, which I believe will be another round of chemo.

I was pretty despondent at first, but I’m getting into fighting mode again now. I beat it once, I can beat it again. And this time I know more about what to watch for – and it’s not the middle of winter, so it will be significantly easier to keep up my activity levels.

 

Help! Help! Help!

I was REALLY hoping to get back to work in June so I can get caught up on bills and have a little room to enjoy some summertime activities, but I’m not sure how realistic that is. Like everything else, I’ll see how things progress and take things as slowly as I need to.

But in the meantime, if you feel the spirit moves you, please consider a donation to my GoFundMe page.

As always, I truly appreciate everyone’s love and support in whatever form or fashion that might manifest.

January
16
2019

Hello again and Happy New Year!

[NOTE: THIS IS A MORE GENERAL UPDATE MARKING A MONUMENTAL "BEAT" IN MY SAGA...]

Dear friends and colleagues…it’s been a while…

Where have I been?

As many of you know, late last summer, I was diagnosed with Stage 3 colon cancer. I had surgery in early September and then started four months of chemo.

Today, Tuesday, January 15, 2019 was the beginning of my last chemo treatment!

My chemo is a four-hour in-office routine followed by two more days of at-home treatment via a battery-powered drip pump. The pump comes off Thursday afternoon, at which point I SHOULD be done with that onerous stage!

What’s it like?

Although chemo, essentially, is poisoning your body on purpose, it’s been manageable and/or tolerable for me—still miserable and frustrating, of course, but manageable (and I still have my hair!).

In my case, this chemo regimen should eradicate any remaining bits of cancer.

Fingers crossed!

So, what’s next?

After this week’s treatment, we’ll wait a couple of weeks and then will do another CT scan (Monday, January 28). If that’s clear, then we’ll schedule the surgery to reverse the temporary work-arounds after the tumor was removed. I’m waiting to get that surgery scheduled, but hopefully sometime in February, followed by probably four to six weeks of recovery.

Best case scenario would be back to normal (working again!) in March or April, but we’ll just see how things go. All I really can do is keep taking things one day at a time. There already have been many surprises, so I’m not writing anything in stone yet.

That said, I’m getting really excited to be back to a ‘normal’ life—seeing friends and family and co-workers and getting back to doing normal things…

From front to end, it will be at least 10 months of a daily slog to get through this.

I’m super thankful that the end is almost in sight!

I could not do this alone!!!

Fortunately I have lots of great support –including from many of you –throughout this whole sordid affair.

THANK YOU AGAIN!!!

I have a Caring Bridge site with updates from throughout my treatment. This also is where I’ll post future updates.

And of course I have a GoFundMe page. Please don’t feel obligated, but any and all financial help is greatly appreciated. I’m still guessing, but this whole thing will be at least $10k OOP, plus another $10k of lost wages due to medical leave vs. working (but better than nothing, and I’m actually staying above water mostly!).

It’s been a long, hard road. I’m not done, but getting hella close now.

I’m sincerely looking forward to reconnecting with all of you very soon!

-Mark

January
4
2019

Jan 2, 2019—New Year and Baby/Next Steps

Happy New Year, Everyone!!!

Chemo #7 was Wed. Jan 2. – I have just ONE MORE to go (Tue. Jan. 15)!!!

Super thrilled to get to the end finally, because these last couple of kinda kicked my ass – just so tired; no energy or stamina, even between treatments… I’m excited for springtime and getting on with the full recovery.

There’s still a long road after last chemo – primarily, the surgery to reconnect my digestive system, hopefully within a couple/few weeks of last chemo, and all the associated recovery. My best guess is about 4 weeks post-chemo for surgery (hopefully sooner!) and then at least 4 weeks recovery from surgery.

We’ll hopefully be into spring by then, with warmer temps to help inspire me push for a much more active approach to recovery, once I’m no longer being poisoned every other week and have my major systems back in place so I can walk and run and jump and move without dragging along an external appliance.

Thanks again to everyone for your continued support – especially Marcy Tessman and others at Charleston|Orwig for the food and snacks including wonderful xmas cookies; local lake pals Davis and Donny for getting me out of the house to the Pine Cone, etc.; all my MN friends and family who continue to offer support, encouragement and prayers – you all know my door is always open for you. J

I don’t usually mention my GoFundMe page, but including a link here if anyone wants to chip in towards the extensive medical bills. My benefits just rolled from short-term to long-term disability and so there’s a little lag right now on getting my paychecks from them – instead of weekly checks for STD, the LTD program cuts checks once a month on the 9th, so it’s been a month since I got paid and another week yet before I do. I’m still OK on major expenses like rent, but now would be a great time if anyone has been thinking about contributing. J

 

Thanks for reading and caring and helping how you can – cheers, everyone!

 

December
10
2018

If being sick isn’t enough…(caution: me venting…just this once, I promise.) [1 of 2; posted 12-09-18]

I try to be mostly positive here.

After all, they found the cancer, cut most of it out and are treating me to destroy the rest of it. This started in late June; surgery early Sept. and then chemo for the last 10 weeks – just six more weeks to go! It will be well into spring before this is all water under the bridge, and even then it won’t be jumping back into normal life full-steam, although I still plan to push as much as I can to get back to the new-new normal vs. this new normal.

None of it is easy, but I have great support, and it’s all been “OK”.

Tolerable…

Manageable…

I adjust and keep going and rolling with the punches, because what else do you do?

Still, I can’t always kid myself that I’m not really sick.

Because, surprise – I’m really effing sick!

I’m not alone in being sick, and not even the worst-case any one of you can name or point to, but jumping-jebus-on-a-pogo-stick, it seems like just dealing with being sick should be enough, right?

No, of course not…

So I have to bitch, just once…

I have to bitch, just once, about the paperwork and billing/approvals, and even being able to get the (&$%$&^#*(& #) ostomy supplies I need. Last chemo was Tuesday. The pump came out yesterday, and I also met w/ the wound care team at Aurora to look at my ostomy, which is just irritated and driving me crazy sometimes – basically diaper rash! But, the ostomy supplier I’ve been going through is absolutely worthless! I placed an order on Nov. 17, before Thanksgiving (two weeks ago). Insurance doesn’t cover one item, so I gave them my CC# to bill me. A week later (last week), they called to ask if I wanted to pay for that item since insurance doesn’t cover it.

“Uh, yes, please – as I said LAST WEEK. And right &*^$%&# away, because I need those supplies to help ease the irritation.”

So it’s now week three -- chemo week (12/4), which kind of destroys me for a couple days – and the supplies should be here, right?

Tell me how friggin’ surprised I was when they called me this morning (12/6) to ask if I needed those supplies!!!

I actually, honestly asked, “Is this a joke? Tell me this is a joke.”

It wasn’t…

And so…three days after chemo I got to spend all day on the phone with Aurora billing, insurance, and a couple new vendors for my supplies, one of which seems like they can actually deliver.

I’m crossing my fingers that at least one medical devise vendor out there can deliver the needed supplies.

I’d like to think that if Amazon and Chewy can get dog food and consumer crap on time and without hassle, certainly someone can do the same with medical supplies, right?

/end rant

December
10
2018

A More Positive Note [2 of 2; posted 12-09-18]

Christmas, the official start of winter and the New Year are just weeks away.

As we head into the end of this year, most people are winding down and planning for the holidays and time off—I’m trying to fast-forward to next spring, at least in my head.

I bought a beautiful new Christmas tree and even found a nice spot for it – I’m still deciding where the other lights will go, but hope to get those up during this “good” non-chemo week.

Because I continue to tolerate the chemo with just moderate side effects, those treatments will go through mid- to late January. Chemo will be followed by up to three months of recovery after the last treatment. Plus, sometime after chemo is complete, I still have the follow-up surgery to reconnect my innards and associated recovery time there...

So, that’s at least a big chunk of Feb, Mar and April before I’m expected to be fully functional, or thereabouts…and that means that Spring will be about to spring just as I’m completing treatment and getting stronger and stronger.

Spring Relaunch/Rebirth/Renewal

To me, Spring always has been about rebirth and renewal.

Now that I’m finally at the farm, I hope to start lots of planting. My vision is along the lines of agroecology and a small “food forest” of edible plants that work together in small companion plantings. A super simple and highly flexible concept, but one that requires good planning and a clearer vision than what I have in focus so far…this is a big area where I’m trying to use my still-somewhat-limited mental and physical energy to keep pushing forward every single day.

AS an aside, I started looking at this farm last April and was ready to move in by May, but due to repairs and other delays, I didn’t move in until August, which was right near the start of this whole damn cancer thing… I had mowed a couple of times through the summer, but all of the existing garden beds were completely neglected last year. Even after hard freezes, most are overgrown with grasses and weeds…just waiting for attention next Spring.

The positive part of this delay is that I’ve had a few months here to get a feel for the landscape – to note the slopes and pitches, identify which areas get the most sun, which hold water after rains, etc. Observation is, in fact, the first step of good agroecology. That and lots, lots, lots more research on specific plants and varieties. Of course, I still have several months of observation before the first plantings go into the dirt…

Although I have other options and desires, for now I’m planning to stay here a bit longer and see what develops and evolves vs. my various visions of what to do with this place’s potential.

OK, plants -- check. What about animals?

The last tenants here had chickens and geese that mostly roamed free, including in and out of the house if the neighbors’ stories and rumors are true, and there’s still a coop set up in the barn...

Other local friends, and Craigslist ads, have goats, pigs and a variety of other farm critters available if I want. (Oh how I wish I could justify the expense of getting a horse!)

Maybe down the road, but I’m not ready to go there just yet. J

For now, I’m more immediately interested in trying to get back into fostering rescue dogs. I’m going to try soon, even as I get into the last few weeks of treatment, especially since there are about six or eight Great Danes that need temporary homes right before the holidays.

Most days should be just fine to have another 130-lb critter here…

I’m also seriously contemplating another one or two cats or kittens. My hesitation here is only that, on one hand I want cuddly sweet kittens to curl up with me, and on the other hand, I want barn cats helping Jack with mousing and critter control. Decisions! Decisions!!!

OK, what else?

I have several other “projects”, as any respectable middle-aged male should.

There’s still tons of cleaning and organizing planned for the barn as well as the garage and studio building -- and overdue upkeep/maintenance throughout as well, especially with the magical old barn.

I now have a small propane heater set up in the lower barn level. The previous tenant had started blocking some of the drafts into one decent-sized work area, and I’ve been continuing to refine the space for my needs.

Many of the other projects will be easier and more realistic to do once I have this warm(ish) workspace complete, and that will be a huge help to being ready for spring planting, too.

The farm, the farm, the farm…what about getting away and having some fun?

I have plenty of places to go and tons of people to see. It’s not exactly easy for me to travel much right now except maybe a few days out of each month in between chemo treatments. But as chemo winds down, I want to get out to see all the wonderful friends and family near and far who have continued to support me through all of this. Jackson, Mankato, Minneapolis – you’re all on my short list. I’d also really like to go see D.C. finally, get out to Colorado again and maybe even find an excuse to revisit NOLA and Nashville.

We’ll see I guess, but I hope to knock out a large part of that list in the coming months.

I’m going to get a motorcycle again, too.

This area is perfect for day rides, and most of the friends I want to visit are within easy riding distance as well. It’s been too long since I was a regular rider, and once I’m cancer free, I am going riding again. It just has to happen.

That’s a lot. Anything else?

At some point I will return to work, too. I’ve been focused on my own stuff, but in touch regularly with the wonderful people at Charleston|Orwig.  I have a hard time right now seeing how I’ll go back to my old role exactly. Too much has changed there and with me, too. But they’re a good group of wonderful people doing really good work for interesting clients in the ag and food space. It’s a fascinating area with tendrils that reach into each of our lives in so many ways. I know I can contribute and am excited to do so again. The best part is that we’ll figure out what that looks like as a team.

This is all just a short glimpse into my mindset and positive planning and prep. I also need to continue eating and drinking more food and fluids than I usually want. I need to gain back some weight and start building strength and endurance. Better foods and other complimentary healthful practices are and will continue to be an important part of this.

Every one of you who read my posts, send me good vibes, bring me food or help with other needs and prayers is so greatly appreciated. Without you all I would not be here fighting as hard as I am. Thank you, thank you, thank you, all, a million, million times.

Happy New Year, Merry Christmas and Peace to all of us!

-Mark