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

[Breeze]

December 21, 2016

I just got a call from the hospital. I recognized the number on my phone. As I was answering the call my heart started pounding in my chest as my anxiety rose awaiting the results of my MRI. Only problem was, it ws the business office calling to get a payment. Ugh...still waiting on results.

[CraigSca]

Can't even imagine what you're going through, but I was skipping to the end of your statement so I could just get to the results myself. Let us know...

[PilotMan]

Totally agree with Craig. We had our family Christmas today and you were on my mind. Stay strong brother.

[Breeze]

December 23, 2016

Just heard back from the Dr. on the MRI. Before my Gamma Knife treatment there were 2 spots they treated and 1 area they expect was a vascular region they wanted to monitor. After the follow up MRI, 1 of the treated spots is completely gone, 1 is now very faint and not growing, and the area believed to be a vascular region shows no change which they feel confirms the vascular region diagnosis. Most importantly, there are NO NEW SPOTS! Thank God!

I will now have another 3 months until my next MRI follow up, but I'll have my follow up CT Scan on the 27th and a meeting to discuss the findings on the 4th (during my 4th cycle). Then I will find out how effective the Xalkori/Keytruda treatments have been.

Given how close to Christmas it is, I doubt I'll update this again until after the holiday, so if you are reading along Merry Christmas to you...

[JonInMiddleGA]

Originally Posted by Breeze

Most importantly, there are NO NEW SPOTS!

Merry Christmas

[digamma]

Merry Christmas. Continued best wishes.

[MizzouRah]

Merry Christmas indeed!

[law90026]

Merry Christmas

[CraigSca]

YES, YES, YES! Awesome news! Have a nice, quiet, restful Christmas!

[BYU 14]

Great news, wishing you and the family a very Merry Christmas!

[Young Drachma]

Glad for the positive news. All the best to you!

[hoopsguy]

Congrats on the recent report! Hope that you had a terrific Christmas with your family.

[Breeze]

December 27, 2016

Thank you guys so much for the well wishes, and I did have a very nice Christmas by the way.

Today I have my follow up CT scan. This will let me know how effective the Xalkori/Keytruda has been so I'm saying my prayers for a good result. Unfortunately, I won't find anything out until the 4th, when I go back in for my next infusion.

I do have some disturbing news to report. Over the last couple of days I've had moments where there was discomfort under my rib cage on the left side.
I wouldn't qualify it as pain, but it also isn't a normal experience for me. I haven't said anything about it to the wife yet because I don't want to ramp up her anxiety during the holiday, and honestly there is nothing that will be done about it until the results of my scans are studied. This actually creates an bit of an enigma in that - if this discomfort is the cancer, and it is growing, I may not know it on this scan, because when I started the treatments all my chest pain initially went away - so it is possible the drugs killed the cancer cells initially, but they've grown back, but potentially not to the point they were when I was initially diagnosed. Meaning I guess I really won't know if things are looking positive for sure until April sometime when I'll have my 2nd follow up CT scan.

Sometimes I marvel at my own stupidity. This morning because I have the CT scan I can't eat for 3 hours before the procedure. During the night I woke up and I never really got back to sleep as I stayed in this semi-conscious twilight for about 90 minutes. During that time my mind raced through different things, one of which was the need to eat early so I could take my pill. During that stage I determined everything would be fine because I had to get up early to take the kids to swim practice and I'd make a protein shake at that time for myself so I could take my pill and not get sick. Only problem was, when I woke up, and consciously thought about my need to eat, I decided I'd wait until I got back home after dropping the kids off from swimming, which put me at home less that 3.5 hours before my appointment, leaving me to rush through making and drinking the smoothie (which of course led to several incidents of brain-freeze... )

[Breeze]

January 5, 2017

Started cycle 4 yesterday, and other than having an extremely long wait for the medicine to be released from pharmacy it went just like the rest of the treatments. The big new from yesterday was the results of my CT Scan. The main doctor came down to talk with me and he reported that:

- There are no new cancer cells
- No existing cells have gotten any bigger
- The big cancer spots have all gotten smaller

So the news almost couldn't be any better. Given the treatment is working well I will continue down this road until the disease shows resistance to the medicines.

[JonInMiddleGA]

Happy New Year indeed

[Subby]

That is fantastic news! Woohoo!

[Kodos]

Wow! Great to hear! To be honest, I often hesitate before clicking on this thread because I'm afraid about what the next update might be. But then I tell myself that you have no choice in the situation, and the least I can do is check in and try to lend you a little support if possible. Glad to hear about things heading in a good direction.

[CraigSca]

YAY!

[Breeze]

January 23, 2017

I start cycle 5 on Wednesday. This should be a pretty easy visit as I won't have to have extra blood taken or EKGs done. However, the one in mid February will be another vampire visit with blood being taken every hour.

[MizzouRah]

Great news!

[PilotMan]

Keep it up! Good to hear!

[BYU 14]

Great news to get the year rolling right!!

[Kodos]

[Breeze]

January 27, 2017

Well everything went off without a hitch at the infusion. In fact, my liver enzymes came back well within normal ranges, so that was a huge plus.

Did find out that I'll be having another CT scan in early February. That's about 6 weeks earlier than I expected to have it. Apparently the CT scans are every 6 weeks not every 3 months. It's a hassle, but it isn't like laying down and getting scanned for 45 minutes is difficult. My only concern is the contrast. The steroids I took prior to the last scan seemed to prevent me from having a reaction. Hopefully, they will continue to help.

[Breeze]

February 6, 2017

Tomorrow, I have my second CT Scan since starting my treatment. I'll take my medication to prevent reactions to the iodine dye tonight and again in the morning. I'm praying the results show the medications are continuing to work on the cancer so I can maintain my new status quo. Unfortunately it will be the 15th before I know the results. I'll let you know as soon as I know something.

[BYU 14]

Thoughts and prayers for positive results friend.

[JonInMiddleGA]

May your meds do their mojo and you find patience while waiting for good news afterwards.

[Kodos]

Sending good thoughts your way, Breeze.

[MizzouRah]

Thoughts and prayers sent!

[hoopsguy]

Best of luck with scan and results.

[Breeze]

February 10, 2017

The scan went off without a hitch. In fact, it took longer to drive to the hospital, home from the hospital, and even fill out the paperwork than it did to get scanned. Unfortunately, I did learn that this scan isn't covered by the clinical trial...it's own my insurance and is a cool $800 I don't have. Add this bill to stack of other medical bills that we are paying off very slowly...

I called yesterday down to Emory in hopes of getting the results of the scan early so Cathy doesn't feel the need to attend (so she can take care of kids' morning routine instead). However, they won't reveal the results over the phone. I guess I'll have to wait until the 15th to hear if the medications are still working.

Thanks for the all the well wishes, prayers, and kind thoughts. They are much appreciated.

[Breeze]

February 13, 2017

Just got a bill today from Emory. Apparently, the clinical trial I'm in covers the medications, but the administering of said medications. So after sending the cost my treatments to my insurance company, I got hit with a bill for $5555. This was a thoroughly unexpected and unwelcome surprise...

[Breeze]

February 14, 2017

I go in tomorrow for the start of cycle 6 and my vampire session of blood testing. I'll also find out the results of my scan from the 7th. I have to admit that waiting around 8 days for the results of scan that ultimately could have a major impact on your life is extremely stressful. I'm going to request moving forward that my scans are done 3 or so days before my next visit so I don't have to deal with this long wait again.

[CraigSca]

Can understand that. I know that labs are overstressed, but it always amazed me how long people have to wait to hear for results of test that will impact their lives to such a degree.

My prayers continue to be with you.

[Breeze]

February 16, 2017

The results of the scan were good. No new spots, no growth of existing tumors, and the pleural lining where one of the bigger cancer spots exists has gotten thinner. So some slight improvement over the scan in December. With that in mind I'll will continue on with my current treatment of 2 pills a day and Keytruda every 3 weeks. My next CT scan will be close to my MRI at the end of March. I also requested in the future that my CT Scans be much closer in time to my infusions so I don't have to wait so long for results. I told them the 8 days this time were excruciatingly stressful. So hopefully, I won't have that to deal with moving forward.

[JonInMiddleGA]

Originally Posted by Breeze

So hopefully, I won't have that to deal with moving forward.

Here's to that.

Rock on.

[Kodos]

Good news.

[JAG]

Great news, happy to hear it.

[MizzouRah]

Yes, good news!

[MIJB#19]

New to the thread, I'm just posting to wish you the best of luck in your recovery, Breeze.

[Breeze]

February 22, 2017

Just got a text from my coordinator to inform me that the keytruda (immunotherapy) drug has some new safety warnings. Apparently, taking the drug can lead to Stevens-Johnson Syndrome, Toxic Epidermal Necrolysis (that's not a pretty thing) and immune mediated myocarditis.

I'm pretty sure the myocarditis warning is due to 2 Optiva patients that died following their initial treatment with that drug, and given Keytruda is also a cancer immunotherapy drug the warning was added to it as well.

I'll continue on with the trial even with these new potential side-effects, because ultimately I figure it is worth the risk. Plus most of these new problems are reported about 14 days after the first dose, and I'll be having my 7th in a couple of weeks. Just one more thing that I need to pray about...

[MizzouRah]

I'll continue to pray for you and hope for more positive progress.

[BYU 14]

Keeping the good vibes coming my friend and praying you are past the danger point of the side effects indicated.

[Breeze]

February 23, 2017

I really debated putting this in the thread...but figured if I didn't this ends up simply being a log of my visits to the doctors...

A few weeks ago one of the girls on the swim team announced at practice that her father only had a few days left to live. He was dying of cancer that had spread throughout his body (as a quick side note, he was able to recover enough to go home for now). This really hit the kids hard. You see I've been doing so well that I'm sure it's pretty easy for the kids to go about the day as if there is no problem. I'm not getting sick all the time, I'm not losing weight or my hair, and all I really need to do is take a couple of pills. They know I have cancer, we don't avoid the topic or try to hide anything, but the impact is minimal especially to them right now. This announcement sort of woke them up a bit.

Fast forward to last night. For the first time, one of the kids actually admitted that it was really bothering them. Brett, who's really struggled with pretty much everything this year, after arguing with us for a long time got to talking with the wife and during the discussion he talked about how he was depressed, how he wasn't motivated to do school work, and how he was afraid to lose his dad. He mentioned it over and over periodically throughout the conversation, even saying to Cathy, "I know he's your husband, but he's my dad, do you know what it is like to think about losing your dad."

This brings tears to my eyes just writing this, as it is the worst part of the entire diagnosis. As I said when I was first informed that I had cancer, "I want to be here for my kids..."

Obviously, this is just the first of what will probably be many more gut wrenching moments. I just pray they are stretched out over a very long period of time...

[MizzouRah]

That's horrible... I thank God everyday for my health and the health of my family. I can't even imagine how hard it is for your children, let alone his/your wife.

I pray they find a cure someday.

[JonInMiddleGA]

I can only sigh ... 'cause, honestly, I got nothing to offer that feels worth a flip under the circumstances

[hoopsguy]

I've had several friends lose their father in the past few years, and that is emotional for me because it gets me started thinking about potentially losing my 72 year old father. The difference is that most of my friends are in their late 30s/early 40s and have had a far longer run than what Brett is staring in the face. My heart goes out to all of you.

[Kodos]

Yeah, that's a heartwrenching situation. No kid should have to lose their Dad so young.

[AnalBumCover]

As difficult this situation is for all involved, at least the silver lining here is that your son has opened up his feelings and communicated his fears rather than bottling it all in. He is and will continue to be a much better person for doing so.

[Breeze]

March 7, 2017

Cycle 7 starts tomorrow...