Ken's Medical Fund
It seems I have Multiple Myeloma , a type of bone marrow cancer. The good - it's treatable. The bad - it's destroyed a good bit of my hip joints.
============= UPDATE: 10/02/2017 — I started this page while hospitalized, and was in a hurry to get it ‘out there’. For those who care to know more, I’m adding more detail.
I’d had some issues with my right hip since the start of the new year (2017) - pain I’d associated with weather changes, etc. that I’d had before. Didn’t really think much of it as it’d come and go just like always, right? Then I pulled something in my back while trying to help drag some radio equipment upstairs for my ham radio club. Again, this happens from time to time right? Especially as we get a little older and try to do the things we did when we were 25.
Well, after a few months - when things weren’t getting better with my back, I decided to visit a chiropractor. Usually they’re able to work the kinks out and get you back up to speed. It seemed like it was taking longer than usual this time.
Now April, and still in pain, I had a class to attend in Tennessee - so I packed the Ibuprofen and hit the road. Things were getting worse quickly. It was extraordinarily difficult to stand up. It was all I could do to maintain a seated posture during class over the weekend. If not for the help of a few of my classmates, I don’t know what I’d have done. I could barely carry anything, and riding in a vehicle was sheer torture. Something was seriously wrong.
Somehow, I was able to drive back to Wisconsin - no doubt God had a hand in this. Once home, I pretty much crashed & burned. I don’t remember much of the next week or so, except the pain and not wanting to move. Next thing I know, an ambulance is coming to take me away.
Turns out I was in bad shape, kidneys shutting down, dehydrated, etc., so they were worried I might need dialysis. Anyway, I was more or less stabilized here in Manitowoc, lots of tests, and shipped out to the VA in Milwaukee. A lot happened in between and before the first ‘Update’ on this page, and maybe I’ll tell you about that later.
Also, wanted to clarify - Multiple Myeloma is treatable, but there is no cure. The plan is to suppress it with chemo, get a transplant of my own marrow/stem cells, and try not to break or blow anything out in the meantime.
P.S. I'm adjusting the campaign amount occasionally to reflect actual and anticipated near-term costs.
You get back up again. ;)
So that’s what we’ve been doing. It’s been quite a while since an update - it’s been on my list for some time now and is quite overdue. So once again, thanks to everyone who’s supporting us on this crazy journey. If you’ve been following me on my transplant page, https://www.mylifeline.org/teamkenny/updates my last post was in August. We started that page on the advice of the VA Transplant team and I updated it faithfully during the transplant process. I think I’ll eventually put all future updates there, as it won’t spam everyone like GoFundMe seems to do.
Healthwise, I continue to do well so far - praise God. At last check, only an almost imperceptible marker of the cancer was present. That’s a year after the transplant. Given the progression of my disease, this is really good news. I visit the VA in Milwaukee regularly, get my bone strengthener infusion, labs etc., and have started getting vaccinations. (Since I have a new immune system, my previous vaccinations no longer exist). During recent visits to the VA, I’ve been able to share my transplant experience with a few others about to undergo the procedure. Makes me feel good to be able to answer their questions.
While I was able to work while undergoing treatment, it sure is better to be back home with a quasi-reliable internet connection, and I’m enjoying getting out from time to time for Chamber events, radio club meetings, shopping, etc. With a few important exceptions, most things feel like they’re back to ‘normal’. I know it won’t always be this way, so I’m enjoying it while I can! I especially enjoy being able to take care of the hens - they were pretty much off-limits while my immune system was coming back online.
Financially speaking, well, we’re kinda holding our own for the moment - With the polar vertex came the unfortunate failure of a lateral waterline from our city water main. Naturally, we’re responsible for the cost and we simply didn’t have the money. As usual, the Lord comes through - we were able to cover the immediate cost (which amounted to enough to buy a nice used vehicle) with the help of a family member. Now we’ll just trust God to help me pay them back. Additionally, the VA rejected our first hospital bill claim - a few tens of thousands - which, if we cannot resolve with an appeal, we’ll also be responsible for. That’d be enough to buy a nice NEW car. :(. You know, once upon a time I had really good health insurance that covered everything with a reasonable deductible. ‘Nuff said.
Spiritually - I’m hopeful that now that I’m reasonably resilient, perhaps I’ll be able to move forward with a men’s ministry agenda I’ve had for awhile. Looking for some direction from above with that, so prayers for this and my family’s general well-being are greatly appreciated.
That’s about it for now friends - I’ll post another update after my next doctor visit. We still have tons of ‘regular’ extra expenses, doctor bills (yes, even at the VA), pharmacy bills, fuel for trips to Milwaukee etc., so if you feel led to give feel free to use the GoFundMe link or this one https://www.mylifeline.org/teamkenny/givingangels which doesn’t take a cut and is usable right away.
Thank you so much! — Ken
Soon, I'll start a 'maintenance' regimen of low-dose chemo to suppress the cancer for as long as possible. I've had no side effects from previous treatments, and I don't anticipate any now.
That said, yesterday was my first 'bone strengthening' treatment, which may have side effects. We'll see. I'm putting up with some pain from other meds, the doc has switched some recently, so we'll see what happens. ;)
The bone strengthener is given monthly via IV, here's a picture of a cool vein scanner which helps them locate good spots. (at least that's the theory, it still took 3 pokes to nail it this time due to them hitting 'check valves' - which I apparently have in large quantity, lol).
This is the best news I believe I have ever received in my life! I cried all the way home after hearing last night!!! This is a true blessing just 2 days after the 5 year anniversary of losing our dad to cancer!! Miracles do happen, prayers work, we will keep them coming! You are a true soldier and once again - a true inspiration to me, big brother!!! Love you with everything that I am!!
Ken, Beautiful, heartfelt Update. TY.. God whispered in my ear, so enjoy with Love. Barb
I think that's the same kind that Patricia gets, but I don't think they have the cool technology there. I hope it doesn't cause you any problems.
You forgot to mention and show off your new chompers!!!! Hoping these tests all go great and no or very little side effects!!! Prayers continue to flow! Love you, big brother!!!
Thanks for update Ken - really appreciate. Love your positivity... Prayers still flowing.. Barb
Wow!! Thanks for all the detail. My prayers have been flowing since this morning.. You are unbelievable, driving yourself to Milw, then back home!! Go Ken!!! :) ♥
Ken, I admire you so much, especially the fact that you "talk the talk, then walk that walk"... Wish we could help more, but prayers flow constantly for you and Robin,,,,Your strength has blown more wind in my sails to try harder every day. May God Bless you n yours, X-tra Special... Love, Barb