A Matter of Life or Death (a real life journal)

[Izulde]

Fantastic news!

[PilotMan]

Originally Posted by Breeze

October 12, 2021

Most recent CT scan continues to show no areas of concern, so I restart my clock and I get to relax through the holiday season.

Sorry I missed this earlier, but damn this is fantastic news!!! So happy for you man!

[PilotMan]

Hey man, hope all is well and you're feeling great! Just thinking about you.

[Breeze]

Hey PilotMan - thanks for checking in. I just had my CT scan again yesterday, so I've felt better. The pre-meds and the contrast I'm allergic to really do a number on me. But if my follow up around April 7th is good, then I'll be good for another 3 months.

[Breeze]

Get my scan results tomorrow. Hopefully, things will continue to be good. I'll let you know.

[Breeze]

Scans are still good. I was a little concerned when my doctor and not a PA walked in. I was convinced I was about to get bad news, but thankfully, I didn't. Reset the clock for another 3 months.

[PilotMan]

Hell YES!! Great news! That's fantastic man!

[BYU 14]

Love the continued positive updates!!

[Kodos]

Keep hitting that reset button!

[Breeze]

I can hit the reset button again. Both the CT and MRI were good. In fact, because I'm over 5 years with the Alectinib the Radiation Oncologist (MRI) was ready to push me back to once a year, but unfortunately, because I'm still getting body scans every 3 months, he wasn't comfortable being that far behind with information.

Also, while my scans were good, my mother's weren't. She going in today (7/18) for surgery to remove cancer from her breast. Praying they will be able to get it all and it is still localized.

[PilotMan]

Thanks for the update, and great news man!

Sending good thoughts for your mom!

Keep fighting the good fight.

[Breeze]

My most recent CT scan showed no changes, so I reset for another 3 months, which is great. Moreover, I also got some additional good news. Moving forward, my CTs will only use contrast every other time. This is a big deal for me, because being allergic to the contrast forces me to take steroids' and Benadryl to counteract the allergy, and those things plus the contrast makes me feel like crap for about 4 or 5 days. Now I'll only have to deal with that every 6 months rather than every 3.

[JonInMiddleGA]

Originally Posted by Breeze

My most recent CT scan showed no changes, so I reset for another 3 months, which is great. Moreover, I also got some additional good news. Moving forward, my CTs will only use contrast every other time. This is a big deal for me, because being allergic to the contrast forces me to take steroids' and Benadryl to counteract the allergy, and those things plus the contrast makes me feel like crap for about 4 or 5 days. Now I'll only have to deal with that every 6 months rather than every 3.

Outfuckingstanding on all counts

That contrast allergy ain't no joke, so only dealing with the routine twice a year instead of four is a solid win.

[PilotMan]

Man that's good news Breeze. Especially the contrast part. It's always shitty to have things you are allergic to actually shot into your body. Keep on fighting the good fight! Happy for you.

[Kodos]

Great news, Breeze! Keep it coming. I hope the treatment for your Mom is going well.

[Breeze]

Hey Kodos, thanks, and my mom is doing fine. The surgery went well and they were able to get all traces of the cancer. They had discussions with her about going on Chemo, but she declined out of fear the treatment would do more harm than good. She didn't want to get so sick she lost a lot of weight and strength which she might not recover from at her age. As an alternative, she, like me, will have a CT scan every 3 months so the doctors can closely monitor the situation.

[Breeze]

CT and MRI results came back with no changes. Restart the clock for another 3 months.

It was really nice not having to deal with the CT contrast this cycle. I definitely felt better. Now maybe with the stress of waiting for the results gone I'll be able to sleep better.

[Izulde]

Wonderful news, Breeze. Keep on keeping on

[JonInMiddleGA]

Most excellent

[PilotMan]

Freaking great man. Keep it up!

[PilotMan]

No updates for 7 months!? How are things?

[Breeze]

Hey PM,

Not on here as much as I used to be because there are no swimming updates to post anymore. Meds are continuing to work and I’m doing good. Did have a terrible experience with my last visit to Emory. The winship cancer center moved to midtown (down by GaTech), which makes my drive to the Decater campus seem short. I sat in traffic for 90 minutes, got to the facility and was informed that I wasn’t on the schedule. Apparently, when they made my appointment they made it for Decater, but when they moved offices they didn’t migrate the appointments they rescheduled them, but no one reached out to me to let me know. Fun times. They wanted me to reschedule and make that trip again and I told them to go pound sand. I did go to an Emory location near me to get my blood work done, and other than my red blood cell count being a little low, I’m good.

Appreciate you checking in.

[JonInMiddleGA]

Originally Posted by Breeze

Hey PM,

Not on here as much as I used to be because there are no swimming updates to post anymore. Meds are continuing to work and I’m doing good. Did have a terrible experience with my last visit to Emory. The winship cancer center moved to midtown (down by GaTech), which makes my drive to the Decater campus seem short. I sat in traffic for 90 minutes, got to the facility and was informed that I wasn’t on the schedule. Apparently, when they made my appointment they made it for Decater, but when they moved offices they didn’t migrate the appointments they rescheduled them, but no one reached out to me to let me know. Fun times. They wanted me to reschedule and make that trip again and I told them to go pound sand. I did go to an Emory location near me to get my blood work done, and other than my red blood cell count being a little low, I’m good.

Appreciate you checking in.

Would that be the new building they were working on when we made our trips downtown (i.e. adjacent to the former Crawford Long?)

[Breeze]

Originally Posted by JonInMiddleGA

Would that be the new building they were working on when we made our trips downtown (i.e. adjacent to the former Crawford Long?)

I don’t know the old midtown area at all. I can tell you it’s right at Leland, because it was easy to jump in the connector north once I headed home. Does that sound like the same spot?

[Kodos]

Glad for the update. Keep on with the good news!

[JonInMiddleGA]

Originally Posted by Breeze

I don’t know the old midtown area at all. I can tell you it’s right at Leland, because it was easy to jump in the connector north once I headed home. Does that sound like the same spot?

I'm guessing this meant Linden (rather than Leland), so yeah this sounds like the same.

The new Winship facility was under construction pretty much during our entire ordeal. I guess I just hadn't realized they finally got it opened up. Hopefully it makes a better experience for both Winship patients and regular Emory patients, cause the logistics of having all that in one overtaxed building were ... not great (30 minutes or more to even attempt to self-park, lines extending well out onto Peachtree Street during midday, etc)

Alas, the scheduling snafu is what I consider quintessential Emory today. About as Emory as Emory could get unfortunately.

[Breeze]

Most recent scan was good. So I’ll keep going through the end of the year.

[Breeze]

Blood work and scans continue to look good!

[PilotMan]

Great to hear man. This thread always brings life into focus. Happy you're doing well.

[Kodos]

Keep up the good news!

[JonInMiddleGA]

Only just saw the latest update.

I f'n love it.

[Breeze]

Hey guys. Most recent ct and blood work looks good. Got an MRI in early June as my next scan.

[PilotMan]

Outstanding man! Great to hear. How have you been feeling?

[Breeze]

I’m feeling pretty good. I was playing a bunch of tennis about a year ago but my tennis elbow got so bad I had to stop. Went through cortisone shots and PT but it didn’t help, so I had surgery in February. That has helped day to day activities to not hurt, but it isn’t good enough to play again. Unfortunately, that means my weight is up a good bit…. Hoping I’ll be able to play when my strength training is finished. But under the circumstances- I sure as heck can’t complain.

Thanks for checking.

[Breeze]

Had my most recent ct, but the idiots at the imaging facility screwed up. I handed them orders for scan of the chest and a second order for a scan of the abdomen and pelvis. For some reason, they apparently didn’t realize the orders were different so they only did the abdomen and pelvis. I’ve been going to this facility 4 times a year for 8 years, you’d think they could figure this out at this point…how you fail to do the chest scan when the underlying problem is lung cancer escapes me. I now have another scan scheduled for Friday to get my chest. I’ll let you know when I know the results.