April 14, 2022
April 11, 2022
Robin rode shotgun for this one, and I’m glad she did. This is one of the most dreaded experiences in my clinical trial therapies. T-Cell collection via Mahurkar, which I refer to as “jamming a garden hose into your jugular”. I’ve had it done before, and you may recognize my disdain from prior posts. 😉 …
April 14, 2022
April 1, 2022
March 31, 2022
“A day in the life” – a day of tests to see if I qualify for the upcoming clinical trial.
April 1, 2022
March 4, 2022
March 4, 2022
The one constant about this journey is that everything changes. Constantly. 🙂 The doc needed labs were drawn to see where my cancer numbers are – and depending on that, he’d put me back on my weekly chemo pills and sub-q shot while we wait for the clinical trial procedures. Well, insurance said the copay …
March 4, 2022
February 15, 2022
February 8-9 2021
Getting ready for the CAR-T trial requires that the folks at Dr. Frankenstein’s lab get some of my T-cells. The process itself isn’t too bad, much like donating plasma at your neighborhood blood bank. Getting the plumbing done is a pain in the neck though. The plumbing part requires a Marhurkar (huge catheter) installation in …
February 15, 2022
January 17, 2022
January 17, 2022
Hey folks – as you can see, I’ve opted to move my email notifications back to Tuesdays, as most of my appointments are now on Fridays. Hope this doesn’t cause too much confusion. You can also get an occasional ‘side’ update on the FB group (if you’ve been invited). Since Christmas, there’s been a bit …
January 17, 2022
December 23, 2021
December 24, 2021
Merry Christmas everybody! Well, almost Christmas anyway. I thought I’d throw out a quick update before this thing goes up out in the newsletter tomorrow. Tuesday I got my cataract surgery done on the right guy, and everything went well. It was a little irritating at first but the next day the irritation quickly subsided. …
December 23, 2021
December 8, 2021
Dec 8, 2021
Hi folks, I’ve had a few folks asking for an update, so here it is. 🙂 Since my discharge from the hospital, I’ve been growing ever so slightly stronger every day. Hemoglobin doesn’t seem to be recovering though, in fact I’ve come down a few notches. Might have to eat more spinach. I’ve been doing …
December 8, 2021
November 15, 2021
Mid Nov’ish
Well, I promised Selena an update for you, so here goes. On last report, I think I was needing some additional O2 to relieve the “fluid overload” (as described by the cardio team). First, fluid was prescribed to relieve the calcium excess – and then the chemo also included massive amounts of fluid – (I …
November 15, 2021
November 5, 2021
Nov. 5 Surprise, Surprise, Surprise!
I’m convinced that I may have the shortest period of remission in recorded history, LOL! As I’d said yesterday, I had to come back in today for labs. Well, turns out the cancer is spiking – so it’s back to the ole drawing board. I’ve got another mini-vacay at Froedtert while they give me fluids …
November 5, 2021
November 4, 2021
Nov 4 – Surprise!
Had my regularly scheduled follow up with Dr Dhakal, we’re now 2 months out from treatment. My calcium is way high at 14, it should be 10 max. So I get to hang out awhile and get some fluids, a shot and some IV meds to knock it back down. Since today was ‘surprise’ day, …
November 4, 2021
November 1, 2021
Nov. 1, 2021
A little happiness. I got to see the ophthalmologist, she ran the same tests I’ve had run thrice before, and she can fix one eye by the end of the year – yay! I was hoping to get both because OBVIOUSLY I’ve met my deductible AND max out-of-pocket for insurance this year. Everyone I’ve heard …
November 1, 2021
October 15, 2021
Update – October 14, 2021
Hey, where’ve you been? Hi folks – I’ve been meaning to update the blog – but yet again, I’ve dropped the ball. I sorta have an excuse this time though. The last update was in August, right after my last treatment for the second clinical trial. Not much has happened since then, but here are …
October 15, 2021
August 30, 2021
Update for August 30, 2021
Video Transcription Hello, everybody, this is the latest update today is the 30th of August. And my last treatment was Friday. So I think that was the 27th of August. And I say that’s my last treatment. It’s not really my last treatment, but it’s the last scheduled treatment for this clinical trial, which is …
August 30, 2021
August 22, 2021
Friday the 13th
I’ve gotten so far behind on updates – I’m trying voice notes and transcription. Please pardon the gaffs! Okay, are we recording sounds like we are. Okay, good. So, it’s been a while since my last update, and I don’t know if I should blame them on laziness or hesitancy to talk about myself. Not …
August 22, 2021
June 7, 2021
June 7, 2021
Well, here we go again – a long stretch with no updates. I am going to HAVE to get better at consistency. Here’s my excuse, this time. March was just a very, very bad month for me. I had a reaction to the drugs used in the clinical trial, and they were unable to control …
June 7, 2021
April 20, 2021
So, here’s the insurance deal.
TLDR; Marketplace + subsidy = affordable Marketplace + VA = no subsidy, not affordable Continue clinical trial? Pray for a way to pay for it!
April 20, 2021
April 20, 2021
What happened to March? Major Update.
Wow. I’ve been really bad at consistency – but this has been kind of a tough stretch. I cover what’s happened in the video, and now that I’m getting a bit more energy I can get back to updating more regularly! 🙂
April 20, 2021
February 12, 2021
February 11 Treatment
Lunch. The best part of the day. Tried the taco dip last week, it was good so i had it again. Just under $10 for everything. (Lunch was free at the VA). My appointment for labs was Noon, which is slightly better than the normal 1:00pm regular schedule, hoping of course to finish up early …
February 12, 2021
January 28, 2021
A bit of a Cluster.
I speak about an Amateur Radio website that can be used to locate mobile stations like mine. The web address is https://aprs.fi. (I’ve pre-loaded my callsign with the correct suffix. It should read: KD9AQM-7. The ‘7’ indicates my mobile radio as opposed to my home station. 😉 Oh, and today was my birthday. Meh, whatever.
January 28, 2021
January 19, 2021
Trials – Part Deux
Had to come back to get chemo since yesterday (Thursday 1-14-2021) my white counts were too low. Long day, but easy.
January 19, 2021
January 14, 2021
1-14-2021 – First Day, New Clinical trial.
Part 1 – Part 2 will be published tomorrow, if I’m up to it. 😉 Did you know you can subscribe to these updates in a weekly email? Scroll to the bottom to subscribe!
January 14, 2021
December 18, 2020
Changes
Sorry, I’ve missed a few weeks. Actually – I have a video post I haven’t put up yet, maybe I’ll do that later and backdate it. Been kinda busy, and not really in the mood. Tuesday was my last chemotherapy treatment at the VA, for now anyway. Not sure what the future holds right now, …
December 18, 2020
November 12, 2020
A New Direction?
Well, I’ve had my visit with Dr. Dhakal, and he’s thinking I’m still a good candidate for the clinical trial, so he’s got me on the list and I’ll be up for consideration in January. I’ll have to purchase insurance to cover the costs. If accepted, I’ll either get the T-cell modification or another chemotherapy …
November 12, 2020
November 3, 2020
The Election Day Treatment
Election Day! Scheduled a super-early appointment for treatment today so I could be out of Milwaukee before any election-day shenanigans. It’s kind of a shame to listen to the nurses talk about having to move from their neighborhoods because of the increasing crime in the city, especially of late. I feel sorry for them – …
November 3, 2020
October 21, 2020
Treatment!
My white counts recovered nicely is what they tell me, so I was able to get chemo this week. I must confess though, it felt like this treatment really kicked my butt (more than usual). I was really super-tired and out of energy by the time I got home. My sweetie picked up some fish …
October 21, 2020
October 16, 2020
Numbers are up!
Hi Folks – Finally, some news, right? Well, I always think of something to say when I’m sitting in a treatment room, but it rarely makes it here. I’ll have to get better at that, perhaps a small recorder to capture thoughts. 😉 Went in Tuesday for Chemo – but my white counts were too …
October 16, 2020
August 18, 2020
A Non-Event
Good morning, Readers. I had a Chemo appointment today, and unlike most the trip there and back was a little different (in my mind, anyway). This appointment was during the Democratic National Convention held in Milwaukee and located very close to the interstate exchange I typically use to get to the VA. Though delegate attendance …
August 18, 2020
August 14, 2020
Steady as she goes.
Greetings, readers. A few more weeks have passed – another round of chemo – and depending on my numbers this time (should know in a few days) I might get to increase the time between doses. Not exactly a remission mind you, but better. :). We think we’ve gotten ahead of the ‘fever’ thing – …
August 14, 2020
July 2, 2020
Slacker. I’ll own it.
You know, I have every intention of posting every week. But some weeks are kinda boring – that’s good isn’t it? 😉 In this case, it hasn’t really been that boring, and due to a few hiccups I’ve missed some updates, so here we go. As I mentioned in an earlier post, I’m resuming my …
July 2, 2020
June 2, 2020
Gardening, Vacation, Sleep…
And other things that seem to escape me. 😉 Here it is, the middle of 2020. I’m sitting in front of the Mac at 2:00 am thinking about trying to catch up with all of the things I’d hoped to do this spring. Except here in Wisconsin, there is no spring. Well, maybe a day …
June 2, 2020
May 13, 2020
Well, I was Scot-Free… or so we thought, lol.
Drove to Green Bay to get my Labs done last week, thinking how good things have turned out for me during this outbreak. You know, not needing to drive to Milwaukee 3 out of 4 weeks to get the chemo by infusion. That’s because my numbers went down and the Doc and I were planning …
May 13, 2020
April 16, 2020
Here’s the latest – good stuff. ;)
Since I last posted, a few unusual things have happened. In case you’ve missed it, a good portion of the planet is staying home or otherwise trying to avoid catching a virus by avoiding other people. Sounds familiar. I’ve been practicing for a few years now and am pretty good at it, lol! A few …
April 16, 2020
March 24, 2020
Quarantine? What Quarantine?
Well, it’s day one of the official #saferathome non-martial law quarantine. And in a few hours, I’ll be on the road – one of the many with a viable excuse – a doctor’s appointment. 😉 How’ve I been? Not bad, considering. Had an actual talk with the doc (I do this once monthly) and was …
March 24, 2020
February 25, 2020
Good breakfast at least…
Treatment #3 went well this month, unusually smooth appointment-wise anyway. You see, sometimes the government isn’t always efficient. Maybe you’ve heard that before, lol. My experience with VA healthcare is probably way better than most government agencies though. A typical treatment goes like this: Show up at the right time or a bit earlier and …
February 25, 2020
February 18, 2020
This week’s visit
Took the DAV bus to Milwaukee for today’s appointment and it was par for the course. One person had a late appointment so I didn’t get home until after 4 pm. 🙁 The appointment went okay, labs came back favorable and the doc says that soon we may add more time between treatments, eliminate a …
February 18, 2020
January 31, 2020
Flu
Well, it’s been going around and I got it. There were two dinners I attended back to back, and apparently I couldn’t help myself but be attractive to the bug. Prior to the weekend, my regularly scheduled chemo treatment went off without a hitch. Sunday morning after the dinner, Robin made me take my temp, …
January 31, 2020
January 6, 2020
Survived the Holidays
Actually, I enjoyed them. I still worked a bit, okay – maybe more than a bit – but still did some family stuff, and it was good to see everyone. We should do it more often. Couple of things I’m thankful for – the small amount of down-time the holidays afford. Being around. The lack …
January 6, 2020
December 30, 2019
Excuse me – I think I peed in your container.
Him: [returning from a trip to restroom] “Excuse me – I think I peed in your container.”Me: That’s highly unlikely, as I don’t have a container – but I’ll bet you use that line on all the boys.Him: Confusion, melting into a sheepish grin. [Turns and heads toward chemo chair, IV rack in tow.] We …
December 30, 2019
December 23, 2019
Twas the day before the day before
Well, good afternoon folks. Ken here, it’s December 23rd so that makes it the day before the day before Christmas. So before I forget let me go ahead and wish you a very merry Christmas. Okay so today I drove to Green Bay so that I could get an echocardiogram – I believe that’s what …
December 23, 2019
November 22, 2019
Out with the PICC, in with the port.
Here’s a recap of the week’s events – for those who prefer to read, the transcription is below the video. Also some new photos. Video Transcription & new photos Hello there. I thought I’d do an update from the greenhouse here. I’m stepping outside. We’re letting the chickens go for a walk right now, but …
November 22, 2019
November 14, 2019
Off Week
— Wednesday, Nov. 13 — Didn’t sleep well last night. Feeling a little off. Kinda like in the old old days as a bachelor in the Army and the morning after we’d gone out the night before. Not hurting or sick, but a little sluggish and the equilibrium could use a tune-up. 😉 I made …
November 14, 2019
November 11, 2019
Normal and The Port’s Back On
If all goes as planned, this will be another ‘week off’ from the chemo routine. Kinda back to ‘normal’, right? Well, if nothing else – it means I won’t have to get up early to catch the DAV bus. I wonder if they miss me? Ha Ha – or Hi Hi for my ham radio …
November 11, 2019
November 1, 2019
Halloween 2019
— Thursday, Oct 31 — Rolled the dice on another Thursday van ride. (I’ve been told that few people ride on this Thursday route). Fewer riders = better chance of getting out of there early. Not today. Two other riders and two hospital discharges. (They don’t ride in with us, but ride back if discharged …
November 1, 2019
October 28, 2019
Feeling a little foggy today
Finally slept through the night, woke up about 6:45 am – it’s 2:56 pm now, I’ve worked all day and still feel a little foggy like I just rolled out of bed. Maybe after another night’s rest, I can latch onto ‘normal’. Thankful that I’m still able to swap out an alternator over lunch even …
October 28, 2019
October 26, 2019
Keep’r Movin’
Well, I came to treatment on Thursday all masked up – thought I’d take one of the iconic bathroom selfies. Only this is the VA bathroom, probably cleaner than mine, lol! Labs came back and yay – not neutropenic anymore, numbers back over 1000 (normal being 1500+ so I don’t have to mask up everywhere …
October 26, 2019
October 20, 2019
Newsletter update – Week of LOL
Tuesday, October 15, 2019. So I got to see Dr. Levin yesterday and got my labs taken care of. All the numbers came back good, the chemotherapy is working well, and we’re going to drop one of my medications which should help build up my white count faster. We talked a few minutes about the …
October 20, 2019
October 14, 2019
PICC Predicament
So we talked last week about getting a PICC installed and that process went pretty well. I had an appointment in Green Bay to get the PICC line inspected and bandage removed and replaced because these things need to be looked at weekly. Upon inspection, the nurse found that my arm appeared swollen and red …
October 14, 2019
October 4, 2019
A Little PICC Me Up
Thursday, October 3, 2019 Dictated to Google, please forgive the rambling – but an in-depth hand-written update – ain’t nobody got time for that! Well, today didn’t go quite as planned, but then does any day really go as planned? I was scheduled for my typical chemo treatment today in Milwaukee and the folks there …
October 4, 2019
September 30, 2019
Fell off the wagon. Just a little.
I dictated this to Google. And I’m too lazy at the moment to do much in the way of editing, so please forgive any errata. I know it’s been some time since I’ve offered up a real update on what’s going on with my health. Part of that is because I’ve enjoyed an 18 month …
September 30, 2019
February 11, 2019
What do you do when you get knocked down?
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 …
February 11, 2019
August 15, 2018
August 2018 update
Here’s the latest on my treatment / condition: As you may know, I have monthly visits to the Milwaukee VA for treatment and tests. I’m currently getting a monthly IV for a bone-strengthening medication which is not chemo (I take that via pill daily) but is dangerous enough for the nurse to have to wear …
August 15, 2018
April 18, 2018
Post-Transplant tests
So, in the recent past I’ve been going through another battery of tests (the 100 day mark) for post-transplant. Still waiting on an MRI, but all other tests have been A-OK and I’m still in remission. 🙂 Soon, I’ll start a ‘maintenance’ regimen of low-dose chemo to suppress the cancer for as long as possible. …
April 18, 2018
November 13, 2017
Transplant in Nashville
Good evening friends. Just thought I’d let you know that my bone marrow transplant process has been started. I’m in Nashville undergoing initial testing as we speak. The Nashville VA Medical Center recommended that I share information on this page: https://www.mylifeline.org/teamkenny/updates It has a provision for sharing updates and is better at handling replies etc. …
November 13, 2017
November 2, 2017
Transplant News?
A lot can happen in 15 days. I’ve been enjoying my status of “total remission”, but honestly – I don’t feel anything different. Still have the rib/back pain all. the. time. Was hoping it would go away or at least decrease some. But it’s manageable so I’m good. Been to the dental clinic twice (see …
November 2, 2017
October 24, 2017
Keep on keepin’ on
Good morning, friends. Here’s a quick update. This week was pretty smooth. Only one trip to Milwaukee, and that for chemo. I know, last update mentioned a biopsy, etc., but I was a week ahead of myself, so two trips to MKE next week. Would have been three, but that starts my week off of …
October 24, 2017
October 17, 2017
Good News
Pretty good news yesterday. Doc reviewed MRI and biopsy, found no trace of cancer in my blood or bone marrow. He says I’m in “total remission”, and had the highest level of response to the treatment, a rarity given the progression of the disease. Prayer works. Yeah, he said that too. Praise God! I’ll still …
October 17, 2017
October 16, 2017
Lots of appointments
I usually spend a few minutes each week checking and updating my VA appointment calendar in my phone – because I never want to miss an appointment or be late. My job, since being diagnosed, is this: Be the perfect patient. Do what the doctors say. Don’t give anyone a reason to deny me a …
October 16, 2017
October 10, 2017
Bone Marrow Biopsy II
Well, today marks the last ‘test’ prior to being approved for a transplant – another Bone Marrow Biopsy. The first one (as I was being diagnosed) was excruciating – because they couldn’t give me anything to dampen the pain. It felt like a hammer and chisel were being forced into my tailbone, and then a …
October 10, 2017
October 6, 2017
Chemo & Concrete
It’s been a bit since the last update, I’m thinking that’s a good thing. With cool weather approaching, I’m trying to take advantage of what’s left of my mobility to get some things done. Last weekend Robin & I poured a little section of concrete to join the driveway to the sidewalk which allows a …
October 6, 2017
August 29, 2017
Mental
As part of the ‘qualification’ process for a future transplant, I must undergo several systems tests to make sure everything’s working as it should – cardiopulmonary, skeletal, etc. – Today was the Mental Health assessment – part two, actually. The first was a computerized quiz of sorts, today was a totally human interview. I was …
August 29, 2017
August 23, 2017
Post-Dental age
Well, it’s been just over a week since they pulled all my teeth, and the healing process has been grueling. Yesterday was especially aggravating. The pain meds described as “the good stuff” ran out a few days ago, so I’ve been using my normal pain meds to try and mitigate the pain. Hasn’t really worked …
August 23, 2017
August 16, 2017
Ouch. Very much ouch.
Well, there you go. Tuesday was the procedure – to remove all of my teeth. Not fun. Not one bit.
August 16, 2017
August 4, 2017
Radioactive
And now I’m radioactive. At least until tomorrow. One of my tests required radioactive material be injected in my bloodstream in order to “take pictures”. This is the “camera”. My attendant was not so comely. 🙂
August 4, 2017
July 31, 2017
Nope, didn’t see that coming
I’m going to file this under “didn’t see that one coming”. 🙂 So, Doc wants to put me on medicine to strengthen my bones. Before he can do that, I have to undergo a dental screening – during which they find bone loss around many of my teeth. (I’d lost bone in my hips too, …
July 31, 2017
June 9, 2017
Freedom
Well, alrighty then! The powers that be have seen fit to release me into the wild, as it were. My “screw & glue” seems to be holding up well, and I’m shuffling along with a walker and only use the wheelchair for longer distances. For the past few days I’ve been nursing a cough – …
June 9, 2017
June 8, 2017
Radiation complete
Radiation complete! Today I received my last scheduled treatment, and can now resume chemotherapy. The radiation targeted the tumors in my hip area so that additional damage to the joints will be minimized or hopefully averted. Here’s a picture of my ‘screw & glue’ joint fix – the dark mass is the cement they injected …
June 8, 2017
June 6, 2017
Screw & Glue
Tomorrow I’m scheduled to undergo a procedure called “screw & glue” so that my hip joints (what’s left of them) can be stabilized. Hopefully I’ll be able to walk after that. (I’m currently relegated to a wheelchair). Prayers are appreciated.
June 6, 2017
June 6, 2017
Health Insurance Lamentations
There was a time when I had good health insurance. Unfortunately our healthcare system isn’t what it used to be. I’m going to update the “goal” to reflect the costs that are not covered, so as the bills come in, that number will increase. Again, thank you for your prayers and support. Ken
June 6, 2017
June 5, 2017
I’m radiant.
Today I received radiation treatment #2 of 5. They’re targeting my hip joints to stop the cancer from further damaging the area. You really don’t feel anything when they’re doing it, which is good. 🙂 Three more treatments next week and then it’s back to chemo. Thanks again for being a supporter. You’ve made this …
June 5, 2017
May 31, 2017
My Multiple Myeloma Journey
How to follow my Journey October 5, 2019 I’d originally posted an announcement of my diagnosis on a GoFundMe page on the advice of a friend who had gone through cancer and is still fighting now, praise God. (It’s toward the bottom of this post) He rightly claimed that it would help offset the many …
May 31, 2017
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