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October
24
2018

Update from Jeff

- [ ] Hello everyone. This is Jeff with an update on my GBM journey. Last month after the latest MRI scan, we began to suspect we were running out of viable treatment options. After this months’ MRI and consult with the Radiologist and NuroOncologist, we all agree that we have exhausted all reasonable “curative” options, and since side effects are becoming more and more complicated to resolve , it was time to reconsider my treatment strategy. After discussing it with family and friends and reviewing the medical data out there, I’ve decided to focus all my efforts on comfort issues instead of “curative”options. The biggest obvious change is I’ve discontinued new chemo drugs and visits from the The Visiting Nurses Association and replaced them with a more aggressive partnership with the Kansas City Palliative and Hospice Care-Nursing team for regular health checks and mobility assistance. They are a wonderful team that has already shown great compassion and knowledge. One outcome i am working on is an early December social event to meet and welcome everyone to the new year It is especially important to me since my original diagnosis suggested the median life expectancy for a GBM patient was about 14 months, making it unlikely i would be here for another Christmas. So as they say in Vegas. Im playing with house money so “LetsRoll.”

Jeff

October
9
2018

Update

Just wanted folks to know his scope results were good. He also had a CT scan showing one blood clot still in the lung. He’ll continue the blood thinner medication, can resume a normal diet and should get sent home tomorrow. After all of today’s “festivities” he’s getting a little rest finally.

On a treatment note, he has his regularly scheduled MRI this month and we’ll hopefully have good results and may get to restart chemo. A lot happening this month.

On a home front note, I may be asking for some volunteers to hang out with him a few days when my regular helpers are not available. Usually this involves daytime or business hours. If you like pina coladas and getting caught in the rain........or like naps, snacking, big dogs and dispensing medications......you might be who I’m looking for😉

October
9
2018

October

Well this evening we’re hanging out in the hospital watching a little baseball. We’ve had a couple of setbacks the past couple of weeks. Went the ER for a pulled muscle two Sunday’s ago and today having some GI issues so they want to keep an eye on him and he will have a scope tomorrow just to make sure he has no new issues. He’s in good spirits, but not happy about the liquid diet and lets the nurse know he’s planning on having a cheeseburger and tater tots tomorrow when all is said and done🤨All good thoughts are appreciated. I’ll make a note tomorrow once we find out the results. Hoping to go home soon!

September
13
2018

Finally getting medications smoothed out

I think we are finally getting my medications working together. Edema in ankles seems to be getting better (without dozens of bathroom trips every night. Sleep is getting a bit easier, and i got an incline bed today. Thanks to a lot of physical therapy, some new drugs and dosages, and help from Dr Buren at Encompass Medical, finally things are starting to get a little more comfortable, which in turn makes it easier to focus on battling the tumor, getting serious about my headgear and really dialing in my diabetic diet. Thanks to all my friends and family for the support and encouragement. I love you all! ❤️❤️❤️❤️

August
25
2018

A little laughter can go a long way

Chair

So im gonna tell this story before dianne gets a chance to tell it in a more embarrassing way than it already is.

Stick with me to the ending.

So not to make light of the situation, but i have spent a LOT of time in my new rocker and have come to appreciate its finer mechanisms to get comfortable.

Well apparently last night around midnight i was all rolled up comfy and stretched out in the chair watching TV with Dianne when the chair did a comic book slow roll backwards unceremoniously dumping me on the ground. Luckily i didn’t hit my head and just stretched out a few rib muscles and woke me up with a start. I just rolled off the side, got up and dusted off the pride while Dianne started us laughing uncontrollably. We laughed and giggled and went to bed and slept better than anytime in recent memory.

It reminds me of advice i got this week from Linda, a 2-time 18-year cancer survivor. She said make time every day to watch a cartoon or anything to make you laugh. It really is the best medicine! Turn off the news and watch something that makes you laugh. I wouldn’t recommend trying to become a stuntman but find your laughs and giggles where you can.

Love,

Jeff

August
10
2018

And the saga continues

So JEFF was admitted to the hospital on Tuesday and released on Thursday. At discharge we noticed the medication, a blood thinner, had been filled but the papers said it could be picked up in Arizona. Yes, you read that right. I’m not sure why there, but not only was it filled someplace in Arizona, but was filled the day before we were even discharged. Weird. Right? So to make matters worse, even tho we informed staff of incorrect location of pharmacy and they corrected it, insurance would not fill another script. So my husband who not only has a nasty brain cancer, but now has clots in his lungs and the treatment to keep the clots at bay he can’t receive because someone messed up with the pharmacy.

It is now about 1:30am. My patience and ability to keep calm has got up and went. I’m so angry and the idea of someone else’s mistake possibly causing him harm just makes me crazy. We are at the mercy of this cancer and all of it’s crappy effects. We are at the mercy of medicine and insurance providers.

I have what I say are angels in my life and one is named Pat.. I called him for advice and he helped me understand the need to get JEFF back to the hospital to ensure he received continued treatment for the clots. That being said, we are at the ER and the staff is working hard to figure out a plan. I’m hopeful this will all get corrected at start of business hours later this morning and we won’t have any new emergencies for a long time. We’ll keep you posted.

2:35am
We have received a shot (blood thinner) and are getting a voucher for a couple of days worth until the pharmacy/insurance issue is resolved. Should be allowed to leave soon and go home to our bed! Very appreciative and some feeling some relief!

August
8
2018

Cont’d Update

Good day overall so far. He’s had some issues with a nose bleed but they say the oxygen will irritate the nasal passages and the blood thinners make the bleeds last longer. He now has some sprays to help with that and no more bleeding. He’ll probably go home on oxygen, but it’s just to help until the lungs can get back on track from the clots. We have accepted info/referrals for some in home nursing and possible PT/OT to help him get more mobile and regain some strength. We want him as independent as possible!

They are also completing an echocardiogram on his heart to make sure all is well. He’s getting the full treatment and so far has just been happy to be able to breathe w/o issue. Much of his pain & discomfort has dissipated since starting the blood thinners. Feels like we are on the right track again. We appreciate the love and support!

August
8
2018

Update

He told me this morning that with the oxygen , last night was one of the best nights he’s had in awhile and felt rested. His platelets are a little low so no chemo for a few days, but the numbers are going up so that’s a good thing. He’s had a little nose bleed after using the oxygen, but otherwise is enjoying the room service😂
Just resting and watching a little tv.
We’ll keep everybody posted!