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

[BYU 14]

So awesome to hear the positive news, sending vibes things stay on this track for you!

[JonInMiddleGA]

I'm a bit behind on things, so I'll just say my two cents briefly:

1) You may or may not recall but my wife is a lung cancer survivor, so the surreal nature of hearing the diagnosis rang several bells for me. And there really aren't any just right words I've found.

2) echoing the "journal as you feel, or don't" comments from early on. My wife still marks growing weary of talking or thinking about it as one of the biggest struggles in her situation. If that fatigue hits, do what's best for you.

3) Some recent dealings with Emory (for a third party) did kind of suggest to me that their admin stuff is a little off its game lately, compared to our experiences more than a decade ago at least. And I'm the King of letting fly about that sort of thing.

That said, even with that (and it can be legit maddening) I don't know of anywhere I'd rather be, rather have a family member be, or rather you be. Really unlike any other health care experience I've ever had, there's not just top notch doctors but some downright top notch human beings that seem to have a knack for being in the right place at the right time to let that trait come through.

Thoughts and prayers with you and your family.

[Breeze]

Originally Posted by JonInMiddleGA

I'm a bit behind on things, so I'll just say my two cents briefly:

1) You may or may not recall but my wife is a lung cancer survivor, so the surreal nature of hearing the diagnosis rang several bells for me. And there really aren't any just right words I've found.

2) echoing the "journal as you feel, or don't" comments from early on. My wife still marks growing weary of talking or thinking about it as one of the biggest struggles in her situation. If that fatigue hits, do what's best for you.

3) Some recent dealings with Emory (for a third party) did kind of suggest to me that their admin stuff is a little off its game lately, compared to our experiences more than a decade ago at least. And I'm the King of letting fly about that sort of thing.

That said, even with that (and it can be legit maddening) I don't know of anywhere I'd rather be, rather have a family member be, or rather you be. Really unlike any other health care experience I've ever had, there's not just top notch doctors but some downright top notch human beings that seem to have a knack for being in the right place at the right time to let that trait come through.

Thoughts and prayers with you and your family.

Thanks John...

[Breeze]

October 17, 2016

This weekend marked the first time nausea set in, and I had my first vision related side effects as well. Thankfully, the nausea wasn't severe and the medication I have to counteract it worked well. As for the vision issues, they are basically peripheral vision based and it reacts to light/shade and movement. I end up seeing a trails due to movement and flashes due to changes in light & shade.

Interestingly, the vision issues cropped up every time I woke up, Saturday morning, Saturday nap, and Sunday. Also was present again this morning. So far this side effect clears up pretty quickly, so it hasn't been to impactful for me. It is also something that is supposed to clear up and not return after the first month or so.

[Breeze]

October 25, 2016

Tomorrow I have what I will affectionately refer to as my first vampire treatment. I go into the clinic at 7:30, where they will tap my vein and take blood. Then I'll take my pill and wait around for an hour. At which point they will take my blood again. An hour later they will again take my blood...and an hour later - you get the idea. This will continue for 8 hours. The constant blood monitoring is designed to see how much the drug is impacting my system. Obviously, I need the blood tests to indicate my system is tolerating the impact of the drug.

As far as how things are going. This morning I was about this close || to getting sick (which would have been a first, though it was the second time that I came close). I have had some other side effects to deal with, but nothing that was debilitating.

[CraigSca]

How are the vision issues?

Was going to ask yesterday how you were doing, but as Jim said, keep updating when you feel up to it.

Do they HAVE to take your blood for 8 hours, or is there an opportunity to get out before if the results are to their liking?

[Breeze]

Originally Posted by CraigSca

How are the vision issues?

Was going to ask yesterday how you were doing, but as Jim said, keep updating when you feel up to it.

Do they HAVE to take your blood for 8 hours, or is there an opportunity to get out before if the results are to their liking?

Hey Craig,

The vision issues are still present and they still just show up when I first wake up. I think it is a combination of still being tired and in the mornings I don't turn on all the lights right away which creates more light/shadow transitions. Thankfully, it isn't really a problem.

As for the blood taking...given that this is a clinical trial, my guess is the requirement of taking blood for 8 hours is written into the study, so my bet is yeah, I'll have to sit there through the whole thing. The interesting thing will be seeing how much they draw each time. If they draw 5 vials (which is what they did last time), 9 times (every hour plus the first prior to taking the drug), then I'm betting I'll end up about a pint short when it is all said and done.

Thanks for checking in, and feel free to ask questions, if I'm not up to answering, I won't be on the site to read your inquiry anyway.

[CraigSca]

Originally Posted by Breeze

As for the blood taking...given that this is a clinical trial, my guess is the requirement of taking blood for 8 hours in written into the requirements, so my bet is yeah, I'll have to sit there through the whole thing. The interesting thing will be seeing how much they draw each time. If they draw 5 vials (which is what they did last time), 9 times (every hour plus the first prior to taking the drug), then I'm betting I'll end up about a pint short when it is all said and done.

Yeah, "being part of the requirements for the trial" makes a lot of sense, but good Lord, let's hope it's not that much! Even a single vial x 9 seems like an awful lot. Do you have a ride home?

[Breeze]

Originally Posted by CraigSca

Yeah, "being part of the requirements for the trial" makes a lot of sense, but good Lord, let's hope it's not that much! Even a single vial x 9 seems like an awful lot. Do you have a ride home?

Hey Craig,

Sorry, after I initially responded I signed out and didn't jump back in until late last night. Typically, when I go to Emory, the wife goes with me in case I don't feel up to driving home. This time, because it was going to be all day, and pretty much just blood pulling the wife went to work and the parents went with me. They took the opportunity to check out the area, eat a couple of good meals and learn the facility (look for shortcuts - which is my dad's favorite past time).

[Breeze]

October 27, 2016

So the day started early. I needed to be at Emory at 7:30, which is about 45 miles away, and with Atlanta traffic that is easier said than done. Not wanting to risk it, we left really early and we got down to the facility about 6:15. To waste time we drove around looking for places to eat and back entrances into the facility.

Once they finally opened, the day went pretty much as expected. It started with the nurse pulling blood for my baseline labs. Which were checked before we proceeded. The labs came back fine, the doctor stated that I do have a VERY slightly elevated level in one of my liver enzymes, which is to be expected. It isn't currently high enough to be a problem, and they will continue to monitor it.

Vitals were checked:

Weight - 191 - I expected this to be higher than it has been because I've had to eat a good bit of carbs recently to combat the nausea from the medication. Also, I really pushed water intake in order to make the blood draws quicker, so I expect some of that weight is actually just water.

Blood Pressure - 123/81 - a little higher than I would like. They only took it once so not sure if it is anxiety over the day, or if the medication I'm on is increasing my blood pressure.

From there I took my pill at 8:15 and then the clock started. Blood was pulled again at 9:15, 10:15, 12:15, 2:15, and 4:15. A lot less often than I was originally led to believe. Plus, the 2 hour window later in the day, allowed me to leave and go and get a good lunch. I don't know anything about the additional blood pulls, in fact, I got the impression that they weren't even checked at Emory (could be wrong), but it seemed to me they were going to be shipped off to the facility where the study is homed.

The day was tiring, but all in all I only got stuck 1 time - so really can't complain.

[CraigSca]

Glad you're back. Any idea when you'll hear the results? Glad to see you're keeping your appetite up - that's very important.

[Breeze]

Originally Posted by CraigSca

Glad you're back. Any idea when you'll hear the results? Glad to see you're keeping your appetite up - that's very important.

Other than a basic, "your blood work looks ----------------", I'm not sure I'll get much more. If I do I'll post it here...

[Breeze]

October 28, 2016

I posted this in the Swim Like a Champion dynasty because it applies there as well, but figured I'd post it here for anyone that doesn't read that thread.

Earlier this week we signed all 3 kids up for the high school team, at $350/kid. That adds up really fast even before you have serious medical bills to deal with. We juggled around some money and bills and found the $1050 needed.

Today (10/28), we just got a call from the team treasurer (who is a CRC Summer League team parent). She told us that she explained our situation to the coach and they are going to refund us $350. They said they wanted to do something to help out and they had enough money to more than cover expenses. They also said we are the only family to have 3 kids on the team so they felt that the cost was pretty high when you have to pay for 3 at 1 time.

I'm completely blown away by this. I'd love to put into words how this feels, but the range of emotions is so broad I'm not sure it's possible. Obviously, there is gratitude, but it goes so much farther. I'm honored that they care enough to do this, but there is also a bit of, if not guilt or a feeling of being unworthy, something close to it. I've never been one to ask for help and it feels odd to have people just give it without solicitation.


In other news...my immunotherapy infusion will be Wednesday 11/2.

[Breeze]

October 31, 2016

Last night was the first time my migraine symptoms cropped up since I was diagnosed with cancer. Given I have to go for my infusion on Wednesday, and I really don't want my blood work to come back out of whack, I didn't want to take any additional substances to combat the pain. I tried heat and ice, but it didn't help much. Finally, about 1:30 I gave up and took a couple of Advil (still stayed away from my prescription medicine). I probably got to sleep around 2:30. Of course, today is an early morning practice for the kids so I was up again at 4:30 getting them ready to swim.

I need a nap...

[JonInMiddleGA]

Originally Posted by Breeze

I'm completely blown away by this. I'd love to put into words how this feels, but the range of emotions is so broad I'm not sure it's possible. Obviously, there is gratitude, but it goes so much farther. I'm honored that they care enough to do this, but there is also a bit of, if not guilt or a feeling of being unworthy, something close to it. I've never been one to ask for help and it feels odd to have people just give it without solicitation.

It's a very nice (understatement) gesture on their part but do try to go lightly on yourself about the unworthy/guilt/whateveritis aspect of it.

You're obviously not entirely a stranger to them (best I can tell from the swim stuff) so there IS a certain amount of ... I'll say "earned equity" for lack of a better phrase. You're up at 430a today for cryin' out loud, some graciousness on their part isn't entirely unwarranted here You're still doing the right thing(s) in a tough situation, and my sense is that you'd have been on board with similar if situations were reversed.

So, yeah, don't let too much of that particular thinking linger too long, m'kay.

[Breeze]

November 1, 2016

Tomorrow I have the last step in the initial phase of my treatment as I'll have my first infusion. The immunotherapy drug Keytruda will be administered through an IV, and this procedure will be repeated every 3 weeks. Of all the pieces of this process, this is the one that I have the most apprehension about, and this apprehension is almost exclusively about the side effects. I know generally that the most common side effects are your basic fine print stuff, but given this is a 3 week dose, I'm curious how those side effects will play out. I'm expecting more of an impact initially, then trailing off as the days go by, but we'll see.

[Breeze]

November 3, 2016

The infusion went off without a hitch. Thankfully, there were no allergic reactions (which apparently are relatively common). The drug didn't adversely impact me in any way during the infusion, however, it has made my GI side effects more pronounced. I also learned that the immunotherapy drug can have cumulative effects. In other words, as I do additional infusions some side effects may get worse and others that don't currently exist could become problematic.

In addition, the schedule i was given, which stated I'd have infusions every 3 weeks, isn't accurate. I'm honestly not sure what the schedule will be at this point, but I do know I will go every other week down to Emory for something. The reason I don't know what that is - is because my coordinator and the nurse had different information on what will occur on the visit in two weeks. But basically is comes down to, I'll either get an infusion every other week or I will get 1 a month and follow up blood work 2 weeks later. With this cycle (this infusion actually was the start of my second cycle) I have to go back in next week for a blood draw. I think it will just be one quick one to check the impact of the drug on my system, but I have to get confirmation on that. The potential bad side effects from the immunotherapy drug can be very significant, and given that the study is to monitor how the two drugs interact and how people tolerate it, I'll be monitored pretty closely for the next few weeks.

[Breeze]

November 8, 2016

I have an appointment tomorrow to get blood pulled. It's just a quick check to make sure the Keytruda isn't doing a number on my system.

So far other than having more frequent and longer lasting GI side effects, I haven't noticed much. Of course that doesn't mean there isn't a problem internally. Fingers crossed the results come back clean.

[JAG]

Hey Breeze,

Haven't been on the dynasty forum for a while, so I'm just catching up. Just read everything. Sitting here with tears in my eyes. I don't have the words, but I hope the drugs are effective and last for a while with minimal side effects. Will be following along and hoping for positive outcomes.

[Breeze]

Originally Posted by JAG

Hey Breeze,

Haven't been on the dynasty forum for a while, so I'm just catching up. Just read everything. Sitting here with tears in my eyes. I don't have the words, but I hope the drugs are effective and last for a while with minimal side effects. Will be following along and hoping for positive outcomes.

Hey bud, thanks for checking in. I'll take all the positive thoughts you can muster...

[Breeze]

November 11, 2016

So I have a confession to make. Originally, I wasn't going to get into this aspect of the journey, but I'm not sure how to portray all the emotions without it.

In late 2015, the family budget got really tight. The company I work for didn't give end of year bonuses for 2 straight years, which is tough when the bonus is basically guaranteed (2013 was the first time one had not been given) and it is the thing that moves you from slightly underpaid to well compensated. This squeeze on our income led to some changes, one of which was dropping my life insurance. I had been so healthy that it seemed unnecessary, and the plan was to add it back at the beginning of 2017.

Obviously, that didn't work out, as it is now practically impossible for me to get term life, and there is no way I'm getting anywhere close to the $500,000 plan I had (to be fair I wasn't going to get a $500,000 plan this time, but probably something around $300,000). As it turns out I did just get a guaranteed policy for $25,000 at a rate the won't kill our budget. It's not nearly enough, but hopefully, when it is needed that money combined with my work paid life insurance of $25,000 and my retirement account will be sufficient enough to keep the financial burden off my family.

[Breeze]

November 12, 2016

Not sure if anyone is aware, I know I wasn't until after I was diagnosed, but November is Lung Cancer Awareness month. It's hard to know it because there is no catchy marketing associated with it like the pink breast cancer stuff or the ALS ice water challenge. However, the Washington Post ran a good article the other day, which includes some of the treatments I'm doing, figured I'd post it here...

Immunotherapy Moves to the Front Lines in Fight Against Lung Cancer

[MizzouRah]

Like Jag... I haven't been in the dynasty forums in quite some time. Decided to pop my head in here and after reading through this, I'm praying for you Breeze and will keep you in my thoughts.

[Breeze]

Originally Posted by MizzouRah

Like Jag... I haven't been in the dynasty forums in quite some time. Decided to pop my head in here and after reading through this, I'm praying for you Breeze and will keep you in my thoughts.

Thanks MR...appreciate it...

[Breeze]

November 16, 2016

I have another trip down to Emory today. Not sure exactly what's going to occur as the information I've gotten has been different depending on whose answering. Best guess is this will be a quick blood draw to determine the impact of the Keytruda 2 weeks in. But we'll see...

[Breeze]

November 16, 2016

Weight - 191
Blood Pressure - 109/71

Blood work came back fine. All but 2 inside normal ranges and the two outside were right on the cusp. So far it appears the drugs aren't adversely impacting my systems.

[Greyfriars Bobby]

I haven't been on the forum here for a while, either. I just finished reading through your thread. Your optimism and forthrightness are truly inspiring.

I will keep you in my thoughts and prayers, Breeze. Be strong.

[Breeze]

November 20, 2016

For the first time since I started treatment, my nausea was too much to take. For some reason I developed really bad acid reflux / upset stomach on Saturday night. It was to the point that I felt like my pill had gotten stuck in my throat. I made it through the night, but woke up the next morning feeling ill. I was able to quell the feeling a bit by choking down a bagel and sipping on water, but then came time for my morning pill. That just ramped everything back up.

I'm hoping this isn't a bad omen and I really hope this side effect doesn't become more common.

[Breeze]

Originally Posted by Greyfriars Bobby

I haven't been on the forum here for a while, either. I just finished reading through your thread. Your optimism and forthrightness are truly inspiring.

I will keep you in my thoughts and prayers, Breeze. Be strong.

Thanks GB...

[Breeze]

November 23, 2016

Today starts Phase 2. I go in this afternoon for my second infusion. Will be on the lookout for the dreaded cumulative side effects.

Hoping it goes smoothly so I can enjoy my Thanksgiving.

[PilotMan]

Me too. I want you to be able to have one incredible, fantastic Thanksgiving.

[BYU 14]

Ditto from me as well, wishing you a very happy and enjoyable Thanksgiving.

[Breeze]

November 29, 2016

Nausea got so bad this morning I had to turn around and go back home. No way was I going to make it through traffic to the office without getting sick. The nausea has become much more prominent in the last week to 10 days.

Tomorrow is another blood pull. Thankfully, this part of my trial is about over for a while.


BTW...Thanksgiving went great! Thanks again for the well wishes and prayers.

[Breeze]

December 2, 2016

I got the following text today from my coordinator, "The sponsor would like to know if you have been taking Tylenol/acetaminophen"

This is a HUGE red flag. I have not been taking Tylenol because I know that it's very hard on the liver and I also know the drugs I'm taking can be hard on the liver. This question indicates my liver enzymes from the blood pull on Wednesday are off. I asked and apparently they are returning as Grade 1 high, but they are slowly climbing with each pull...

I don't know what options I'll have if this climbing continues.

[Breeze]

December 7, 2016

I have another (and hopefully the last for a while) visit for a quick blood pull. The key today is for the blood to show reduced or at least stabilized liver enzymes. I have been working on changing my diet since I received the text about taking Tylenol. I've been really focused on eating and drinking things that are good for the liver - leafy green vegetables, apples, lemons (and other citrus), green tea, cabbage and walnuts. Grapefruit may be the best thing, but I can't have that, it interferes with the Xalkori. Fingers crossed that labs come back with positive results.

[Breeze]

December 8, 2018

So one of the two liver enzymes came back lower, the other creeped up a bit more. I don't know if this is good or not because I wasn't told which enzyme was the concern. Regardless, the results didn't trigger any alarms because no comment was made. I'll continue with my new diet and hope for further improvement next Wednesday when I start my 3rd cycle.

I have recently decided that I'm going to purchase 3 leather bound composition style notebooks/journals, where I will start writing down my thoughts on any and all topics. Given the uncertainty of stage 4 cancer, I want to have something to leave with my kids. I hope my treatments allow me to be around for years to come, but If I'm not available to offer advice or support, maybe my words will offer some comfort or guidance. I won't tell them I'm doing it, but hopefully, it will be something they appreciate when I'm gone.

[JAG]

Great idea.

Glad to hear the results were pretty decent considering the red flag post.

[Breeze]

December 13, 2016

Cycle 3 starts tomorrow. Hopefully, the liver friendly diet will once again show more stable liver enzymes, and hopefully the infusion doesn't have major side effects, because the wife and I are supposed to go to her company Christmas party that night.

[CraigSca]

Hoping the Christmas party goes well - are you allowed to go outside the bounds of the liver-friendly diet for a night or two?

[Breeze]

Originally Posted by CraigSca

Hoping the Christmas party goes well - are you allowed to go outside the bounds of the liver-friendly diet for a night or two?

The liver friendly diet is of my own making, so I'm sure the doctor wouldn't mind. And honestly, this liver friendly diet isn't as much about denying myself any specific item, but rather eating things that are good for lowering liver enzyme production (green tea, leafy greens, apples, oranges, walnuts, etc). We are apparently ordering off the menu at a local restaurant this year so I'm sure I'll have numerous options that will fit the diet anyway...if I feel up to going I'll probably end up eating salmon.

[Breeze]

December 15, 2016

Weight - 195.2 (again with jacket and boots so probably my typical 192 weight is more accurate)
Blood Pressure - 122/76


The infusion went fine. No real impact other than it made me a little tired. I did get some acid reflux about the time the IV was finishing up, which also happened in Cycle 2, but a little food and that feeling went away. The big news is my liver enzymes (AEs) came back within normal range. So looks like the diet is helping! Unfortunately, I didn't feel up to going to the Christmas party. Having to battle traffic to get there, not getting home until late and getting up really early to take the kids to swim practice was just too much.

[CraigSca]

Understood on the party. Glad to hear the infusion is having minimal impact on you. Keep fighting the good fight!

[JonInMiddleGA]

Good work on the liver enzymes.

[BYU 14]

Great news on the Liver enzymes!!

[Breeze]

December 20, 2016

Thanks for the well wishes, all. I was really pleased with the enzyme report from my last infusion.

On Friday (16th), I had my follow up MRI to see if any new brain lesions have formed. I thought I had posted this already, but obviously I didn't. I have to admit, going in for this on a Friday, and sitting here on a Tuesday still waiting for results is unnerving. I have to believe this is a similar feeling to someone on trial waiting for a jury to reconvene. I really don't want to go through another Gamma Knife treatment just yet so I'm saying my prayers right now. I'll post the findings once I know something.

[CU Tiger]

Breeze just saw this.
Prayers and thoughts are with you and your family.

I'm amazed and inspired by your strength, candor and perspective.
You can beat this. One day at a time.

I'm pulling, praying and right now crying a touch for you. Your words are an inspiration.

[CraigSca]

Any idea when you'll hear the results of the MRI?

[garion333]

(Continue to) Hang in there!

[Breeze]

Originally Posted by CraigSca

Any idea when you'll hear the results of the MRI?

Hoped I would hear yesterday, but I didn't. I figure it will be any time now.

[Breeze]

Thanks CU and garion...