J's GBM journey

12/19/2023

I remember the days where I could barely get shots without getting lightheaded and almost pass out. Now after years of being poked I swear if they gave me the needle I could do these myself. Comes with the territory I guess. I take all of my appointments serious as I'm not longer afraid to ask the hard questions so my unfortunate take away from this appointment was that temodar, the chemo pills, are no longer doing anything so if the avastin infusions I'm doing now don't work there's not much more they can do but to let it run it's course. Am I scared? not one bit. I wasn't supposed to make it this long and here we are. Feeling better than I have in years. We will tackle that monster when we absolutely have to buy in the mean time I'm still fighting and I will never give up. I just hope thay my story will encourage others that there is hope and remind others that tomorrow is not promised so live every day like it's your last. Be kind you never know what someone else is going through. That will be biggest lesson I will teach my kids through this long journey.

12/18/2023

Not much changed since starting chemo but do have another round of infusion this afternoon along with a checkup with my oncologist. Probably won't t find out much today as my next scan isn't until early January been feeling pretty good still and can't wait for all the Christmas festivities this week.

11/18/2023

Sometimes I shave my head just to remind myself of all I have endured and the strength and determination it took to keep going. Some hide their scars but I wear mine proudly to not only remind myself but also others to not be ashamed but proud of the bumps along the road to get to where you're at and where you're going. Nobody is perfect and our journey is never a smooth road but don't give up, you can't change the past so live today like it's your last. Feeling much better today so time to get these kids out of the house to get some Christmas gift ideas. Hopefully they know we have a budget.

11/05/2023

Haven't updated this page in awhile because really there hasn't been much going on, finally off of steroids going on a few months now so starting to lose some weight that I gained while on them. Still just doing oral chemo and will continue to do so unless we see growth again and then we would take more drastic measures. Tomorrow, on my bday, we also have my scan and oncology appointments assuming since I've been feeling pretty good that we won't see much change. Thank you all for the continued support and prayers. I'll update tomorrow after we're done celebrating at my favorite pizza spot up in Omaha.

10/20/2023

09/11/2023

Okay sorry for the wait, I posted something after leaving UNMC but somehow it disappeared. Freak out moment last night for no reason apparently. While I was sure with having a few s**tty days these last few weeks that we would get bad news today and see tumor growth, fortunately I'm not a neurologist and I was wrong. Tumor is stable and had no growth, my Dr said it even looks like it may have shrank by a mm or 2. It's not even a game of inches Anymore so we will take any shrinkage we can get at this point. Mm by mm not changing anything on my treatment plan aside from going off of steroids and keeping the scans and appts going, the day will most likely come that we will see growth and we will reevaluate the treatment plan then but in the meantime we just keep on trucking. Thank you all for the continued prayers, obviously it's working. Love you all!!! Celebrate with me tonight. It's a tough day for America with it being 9/11 so join me in having a celebratory beer tonight after praying for all those lost on this day years ago. Never forgotten!!!

09/11/2023

You would think that the day before a scan after going through it for almost 4 years now would get easier, problem is that almost every other day before a scan I was confident in good news, until a few months back when we got some bad, made me realize how real and terrible this journey is. After that day I've had a chance to make some memories and enjoy some more time before ultimately steroids once again wrecked my body and knocked me down a few notches and completely deflated my confidence in how this journey is going to end, at this point and especially after having more bad than good days lately my mentality has also shifted in to how I'm going to make the rest of my time work, let alone thrive in my final days. It's been a struggle just to get by. Constantly bloated and miserable, skin stretched so far that my stretch marks from the extreme quick weight gain almost look like they could split open at any time, gross I know but you have no idea what it's like to see that in the mirror every day. As vulnerable as I am at this point I still do my best to make the best of each day and thank God for my boys who are stuck here every day with me while I'm to the point where I can't even put my own socks on anymore. They are troopers and don't ask for anything in return but are glad to help dad not realizing how quickly this could all come crashing down, and how much I couldn't be doing this without their help. They deserve so much more than being stuck with my declining health and watching their dad wither away. Thing that makes them even more amazing is I've asked them multiple times if they would rather go stay with their mom so they could just be kids and not worry about dad but they refuse because somehow they still enjoy being around me so we get a lot of good food in and long gaming sessions which gives us a chance to laugh and forget about how serious life can be. So to sum all that up, I'm hoping for good news tomorrow but I'm absolutely expecting bad news, we've had more good news than most gbm patients get so I'll take that as a win. To all that have reached out thank you, it may feel like I'm avoiding people at this point, truth is I probably am I'm okay I truly am I've had tons of time to process all of this and I don't want to be remembered as sick Jeremy or for those close to me witness my decline. I get it everyone wants to see me and for me to get out more and just be okay, we're passed that, so please just think of the good days and the healthy Jeremy who always had a smile on his face. who became a man once the loves of his life were born that ultimately took me from being a boy to bwimg a man and the best dad there ever was. That is one thing I will always take pride in, not because I think it or others have said it but because I know it's the one thing that I have always taken pride in, my kids. They will continue my legacy and be amazing people because that's what their dad taught them since birth. They give me reason to keep my head held high even on my darkest days. Okay that's a little too much for one day so, keep your heads up. Better days are coming. Scan is in the morning but I probably will rush home to kids so I'll post the news tomorrow evening after I have a chance to process whatever news we get and talk to the kids about it. Hold back those years, sad yes, but it's been an amazing journey, and hell maybe I'm over reacting and we will get good news tomorrow.

08/31/2023

There is something I'm battling that no one but me can truly understand. Something that few can comprehend, walking in my own shoes is a daily struggle. Faking a smile and feeling "okay" for my family and kids, it's not fun but I'm here, I'm present for them and I'm fighting. It's not easy but nothing worth fighting for ever is. Too easily am I now frustrated and upset about how things could and should be but are not, we can't change the past only live in the now and take steps to better the future. The peak of that set of steps seems to get higher every day. yes my posts are getting more raw and emotional but it's only because for too long I have suppressed my feelings and only after being confronted with the worst possible news have I learned to embrace and live in my feelings. Sad, lonely, pi**ed off, happy. Whatever they are. They are temporary and tomorrow is always a new day with new opportunities and a new fight, baby steps. Not just for me but everyone that is struggling with life right now. It's not easy and I'm always here. Just a fb message away, if you call I probably won't answer, nothing against you I just hate crying and struggling with words on the phone. Thank you all for the prayers and support. We're still in this and still fighting. Struggling but fighting. Next scan and oncology appointments are Sept 11. Honestly looking forward to it just to get some updates to see if chemo is working.

08/28/2023

Stolen from someone else but, I'm trying. Had a few good days this weekend finally, so took full advantage of it squeezing in the airshow watched all the videos I took at least 5 times today. Got a bunch of cleaning and running around done today getting ready for these du*****es from the housing authority to come do their final inspection so I can get some assistance with rent so maybe I can get a few bucket list items checked off. Should have some time tomorrow to get another post made here on the next few years after getting all of my appointments up at UNMC set up. Kinda gets crazy after that point.

08/22/2023

I'm sure every cancer patient has had their days where they feel like giving up would be so much easier than the daily struggles, physical, mental and mostly financial. Seems like every day comes with new challenges and as positive as I try to stay it's really been a struggle lately, as hard as it is on me it's becoming even more for family that is trying to ease the financial part of this seemingly neverending journey. I was approved for housing at the beginning of summer and these du*****es have given every excuse to delay the assistance that eventually I'll be getting. My landlord has even gone out of his way to get the house we're In approved so we don't have to move across town. Sent in paperwork only to check to make sure they got it and they say they didn't only to call a few days later saying they found it, delaying my assistance once again. My parents are both trying to retire in the near future and every day feels like I'm becoming a burden on them as well, even though they would never think or say that. It's just how I feel. Starting to get so puffy from retaining fluids that I can't put contacts in because I can't open my eyes wide enough and when I wear my glasses I can't see for s**t. I'm just a wreck lately and needed to vent. When the day does come please continue the love and prayers. Mostly for family that is going to be overwhelmed with unnecessary expenses and grief. The picture is just an idea of how bad it's getting. That after I pushed on my ankle for a few seconds just to show how bad the swelling in my legs and feet are getting. This s**t is getting old real fast.

08/21/2023

Okay since I'm using this page to go in depth about my journey from healthy to brain tumor, followed by GBM diagnosis. I'm going to start from childhood to now, basically was as healthy as could possibly be my entire childhood. So much so that I only missed half a day of kindergarten all of elementary(k-5th) had perfect attendance all of middle school not because I didn't want to miss school I just never got sick. Missed 1 day of school my first 2 years of high school. Really had zero health issues until I was moved to Lincoln for college. My first episode that made me think I had something more going on other than typical hangovers at ages 19 to about 25. I was working for an electrical wholesale warehouse and had an episode that I still remember like it happened yesterday. I had a very mild seizure that basically just made my head twitch out of control to my left side which makes sense now because my tumor in on the right side of my brain. Went right back to work after it happened because I felt pretty normal after it happened At the time we only had 1 vehicle so I would use my lunch break to go pick up kids from school. I was driving home and had another episode and thank God I was going around a bend in the road and the seizure started and my foot came to rest on the brake pedal and I went over the curb and came to rest against a light pole. No damage to car or pole. Someone called in thinking I was a drunk driver and the ambulance came and rushed me to Bryan hospital. They did a few scans and I can remember when they brought in the results and put it up on the light board and it was the first time we saw that bastard. It was golf ball sized and I remember so well looking at my dad and just being completely crushed seeing his reaction. It was life changing for us both. Shortly after my mom also got there and it was another emotional breakdown for us all. Going from a clean bill of health to a brain tumor is quite crushing. This was in 2015 I believe. May be off a few years. Many tbi's(traumatic brain injuries) has the memories from then a little foggy. They did a biopsy of the tumor to see if it was malignant or benign. The neurologist screwed up so we didn't find out at that time. Got all stapled up and spent a few days in the hospital and sent home. Healed up well then was set up for months of appointments up at UNMC in Omaha.... To be continued. It's a lot from that point to now.

08/19/2023

Hopefully everyone got the page invite, going to start using this not only for updates but to tell my story from the beginning starting with my first seizure back in 2013. Hopefully someone just starting or fighting the same fight will find any sort of inspiration from this.