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

If you aren't a reader of my Swim Like a Champion dynasty you probably missed my recent announcement...despite the fact I've been so healthy recently I haven't seen a doctor (except for physicals) in about 4 years, I'm only 47, and a non-smoker - about a month ago I was diagnosed with Stage IV Lung Cancer.

I've been debating constantly on if I should do this journal or not...I can't decide if it will be helpful to me or if it will depress me. Plus, I'm not sure how readers would react either...I know from all the "F" Cancer threads that many people on the board have been touched by this awful disease and I don't know how a first hand account will be viewed (if it is viewed at all). After doing some reading and seeing some other people's blogs that are in a similar situation I've decided to start this and see where it leads. If you aren't interesting in following because it is too depressing, cuts too close to a pre-existing wound, or are simply not entertained, I completely understand. This isn't about getting attention or sympathy. Honestly, I'm not sure if I was healthy if I'd stop to read something of this nature.

After basically a month I've decided to start writing this because my I'll kickoff my treatments tomorrow with a Gamma Knife procedure on the brain (I mentioned stage IV right?). Obviously, there is a long delay from diagnosis to treatment which is unusual, but I'll fill in the details shortly.

June 30, 2016

I go to see the doctor with a persistent dry cough. He diagnosis me with a "mechanical" cough, basically stating that the dry air combined with some irritations (pollen, dust, etc.) in the air caused me to cough, which irritated my throat and chest which in turn caused me to cough more. Basically it created a cycle that I was unable to break. He prescribed a steroid med-pack and antibiotic and things cleared up in about a week.

August 17, 2016

At this point I started developing the same "mechanical" cough I had about 45 days earlier. Only this time I also was also experiencing a little shortness of breath and some abdominal pain, especially on the left side right below the rib cage from my back around the side and to the middle of my rib cage on the front.

He listened to my lungs and again prescribed the exact same thing he had previously. Only this time he also wanted me to get an ultrasound on my liver (which incidentally is on the right, not the left, so not sure what he was thinking)

Second point first, I think the crowd here will be pretty supportive of your journey, lots of thoughts and prayers.

To the first point. In an attempt to make a long story short, I'll offer two opinions. I've had 9 concussions. 6 years ago I had a serious of 4 in about 2 years that I still feel the effects of to this day. In an attempt to see a neurologist I had to fill out a headache diary. Through the process of completing the diary I found out that on 340 days of the year I experienced some kind of headache. I thought I was experiencing headaches maybe once or twice a week. I stopped filling out the diary because the weight of the numbers became depressing. I think that was the right decision.

To the other side, when I went to see my GP after a minor setback he asked me if I told anyone, I said that I had, reluctantly. He said that it's important to reach out because it's a positive sign that I hadn't resigned myself to a certain future.

What I'm getting at is share what you need to, when you need to.

Good luck.

Thanks nilodor, we'll see how it goes...

August 24, 2016

This was the date my ultrasound was scheduled...during the week following my doctor visit my shortness of breath got much worse. To the point I was wheezing, and I had to slow my pace when walking...in fact, I actually had to stop occasionally to catch my breath.

During the ultrasound, the tech asked where I was hurting, I said the left side under the rib cage so thankfully, she ignored the doctor's order to monitor the liver only. During her scan she saw fluid in the lung (she may have actually seen a mass but wouldn't tell me). She immediately sent me back to my primary doctor to get a chest x-ray. Which I did...

The x-ray showed the entire left lung as white (basically indicating it had collapsed). At this point I was sent straight to the emergency room.

I'm not going to go into the gory details, but I was pretty quickly admitted, and my lung was drained of fluid. There was so much fluid in the lung that it completely filled two of their containers in a matter of minutes. The third basically filled over the next 2 days. The insertion of the tube was uneventful as I was drugged for it. The worst part was the coughing that re inflated the lung after the initial draining. That was over 1 hour of violent constant coughing. After the coughing spell finished, I basically slept the rest of the time.

Breeze, I'm so sorry to hear this. I support your journal for sure. That's some brutal news to digest. I feel for you and your entire family. It's simply not fair.

Thanks PM....

August 25, 2016

Most of the day was spent draining the lung. Some tests were run, but nothing definitive was determined...

August 26, 2016

The Doctor entered my room early in the morning and announced, "The testing on the fluid from the lung came back and the markers tested positive for lung cancer."

When I was told this, I immediately went numb. The doctor left the wife and I alone to digest this news. Almost immediately I began to think of my kids, how I wanted to see them grow up, how I needed to be there for them, how much I'd miss them and my wife. I cried, A LOT...

Following this, I had to have a PET scan and an MRI to determine if the cancer had spread beyond the lung.

The good news for the day, by the afternoon the lung had stopped draining, and I was allowed to go home.

~September 2, 2016

Went to see my oncologist Dr. Reddy to get details on what was found during all the testing. When I went in, he informed me that I have non-small cell cancer and it is mostly pleural effusion in nature (lung lining). This type of cancer is much more common in non-smokers. In addition, he stated he felt I probably had a mutation cancer, but that additional tests had to be run to determine that. HE went on to tell me that there was a spot on my brain about the size of a period on a piece of paper that would need to be taken care of. In addition, there were three tiny spots in my abdomen as well. The fact that the cancer is now dispersed through the body makes this advanced (stage IV).

There were a million questions from me, obviously:

- how did this happen I've been so healthy
- should I have recognized a symptom so it could have been caught quicker
- what are my treatment options
- what is likely to kill me
- and numerous other questions I can't even recall at this point.

He asked me some questions about my background and work history to see if I could have been exposed to something that might have triggered this, but there were no obvious indicators so basically, he has no idea why might have caused the cancer.

He told me that there probably weren't any indicators for me to noticed and that based on the spread of the cancer I've probably had it for a couple of years even though I felt healthy. He added that if my cancer is a mutation that it is very common for it to strike younger people and it often is caught until it is already stage IV.

Treatment will depend on the results of the mutation test. If I have a mutation there are drugs that will specifically attack just mutated cells, thus the side effects aren't as great. If not, I'll go into standard chemo.

What is likely to kill me, oddly enough it is the period size brain lesion. The one I currently have can be handled extremely easily, but unfortunately once cancer gets into the central nervous system (CNS), it tends to continue to pop up new and more spots, until it reaches a point that pinpoint radiation is no longer an option.

You will notice one item I did not ask was, "How long have I got?" That is a question, that I will not ask. He did volunteer that with my age and health he expects to have me around for quite a while. I don't know odds, or best/worst case scenarios, and I've avoided blogs, reports, writings that include that information. So if you decide to read and follow along with my journey, and you research this aspect of the disease yourself, PLEASE DON'T POST IT HERE - it is easy enough to go to the dark places without that albatross around my neck.


Because I have the lesion on the brain, I had to make an appointment with the radiological oncologist and a neurologist. Plus I had to schedule a follow up with the oncologist to go over the pathology report (determine if the cancer is a mutation or not).

~September 6, 2016


I meet with the radiological oncologist to go over the treatment for the lesion in the brain. Where he informed me that the MRI showed not 1 but 3 spots (again my heart sank into my stomach at this news). He said all 3 were small and could be easily taken care of. In fact, he said they would use the Gamma Knife to attack just those spots leaving the rest of the brain untouched. Then he went on to tell me how it would work.

At a very very high level, what they do is get another MRI, only this time I wear a brace around my head that they can use to map the specific spots. In order to keep the brace in place it is SCREWED TO MY SKULL! Also, when I go into MRI and Radiation, the brace is also screwed to the table to prevent me from moving.

I still needed to meet with the neurologist before I could schedule this procedure and that was not going to happen until the 13th.

September 9, 2016

The follow up with my main oncologist, Dr. Reddy. This time the pathology was back and I learned that I have and ALK Mutation. ALK Mutations occur in about %4 of all lung cancer patients. It is much more common in young non-smokers and it is more common in Asia (I've never even been to Asia...but ok).

This is good and bad news:

The good news is there are 2 ALK inhibitors that are approved and available for treatment (I believe there is a 3rd that is currently in a clinical trail). So I'll will be on one of these drugs which will limit the impact of the side effects.

The bad news - This can't be cured - There is never a full remission. Life now becomes a effort at maintenance. Taking my drugs on a daily bases and constant monitoring for effectiveness. Similar to someone with heart disease or blood pressure issues.

Also at some point the ALK targeted medication will cease to work, either because it just becomes ineffective, or because the cells mutate again.

Dr. Reddy also informed me that Emory has a clinical trail going on that I might be a candidate for and he urged me to go see Dr. Ramalingam (one of the top lung cancer doctors in the world). So I scheduled an appointment for the 13th.

September 13, 2016

I wake up, go to see Dr. MacDonald (the neurologist) only to realize I'm at the wrong office. During this morning he's in an office about half an hour away. So my stress goes way up...I try to call and let them know but they failed to switch off of after hours answering service. I got to the other office about 40 minutes late but they still took me.

When the dr. came in, I apologized for screwing up his schedule...he said not to worry about it.

After the obligatory questions of smoking, general health, etc...he brought up my brain scans to show me the spots in question. Initially, he only showed one...then he found one of the other two the radio-oncologist mentioned. Both we very tiny in basically the same location, front third, top outer edge, on opposite sides of the brain. The 3rd spot he said he didn't believe to be a lesion, but rather some vessels that have lived through 47 years of athletic life, and they don't need to treated.


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Later that same day, I went down to Emory for my meeting with Dr. Ramalingam (Dr. R). After a LONG wait. I was finally taken back. A pulmonologist that works in conjunction with Dr. R. did a pretty thorough exam, which I apparently passed, because she said that I "even now" seem to be in great shape.

Dr. R, came in and after his brief follow up questions, he started in on the clinical trial. Basically, with this trial I would be placed on the 1st ALK approved drug (which would probably have been my method of treatment anyway), but the difference here is I would also be placed on an immunotherapy drug (PB1). There two have never been used together before. The hope is the ALK targeted drug will impact the growth and spread of the disease, while the immunotherapy drug will rev up the immune system to recognize and attack the cancer cells.

After discussion with Dr. Reddy, as well as input from several other oncologists, I have decided to enter the trail. All have reported basically what I felt - there really is no drawback to this trial. Yes, by having 2 meds, my side effects will be greater, but the results could be better or better yet - could last longer.

Now I have to get the gamma knife done, then have a 2 week wash out period for the radiation to leave my system before I can start my treatments.

September 20, 2016

Follow up with the pulmonologist. X-rays of the lungs show no new fluid build up. He was extremely pleased by this, especially given that I haven't started any treatment yet. In fact, he said as long as I don't start getting shortness of breath that he doesn't need to see me again.

September 22, 2016

Gamma Knife day...The key to this day is to not only take care my two small spots, but given it has been about a month since the two we know about were found, to not have any new ones show up.

I get up at 4:30 A.M., get dressed and head to the radiologist. As I wait for the door to open I meet a guy who had Hodkins Lymphoma at 18, which he beat, then he got testicular cancer 6 years later which he beat, then about 6 years after that, he went to the doctor not feeling well, and found out he was eaten up with cancer all through his torso. He obviously had something in his brain as well because he was going for his 3rd Gamma Knife treatment.

He had such a great attitude and he knew all the nurses. I also found out when they assigned him to his room, that it was his anniversary, and the staff at the center had decorated his room for he and his wife

Upon arrival I was weighed (183 - which is down due to my changes in diet...I'll cover that more once I'm caught up on the timeline). Then I entered my room,, stripped down and put on the ridiculous gown and pants they provided. Then answered a million questions, had to repeat my name and date of birth over and over.

Finally an IV went in, and pretty quickly afterwards the joy juice. Then the neurologist and radiologist came in to attach the bracket to my head (while the nurse monitored my vital signs). They start by placing a couple of cushioned pins in your ears. Then line up the device to determine how it will fit. From here, the neurologist injected local anesthesia into two places on my forehead and two places in the back of my skull. Next the screwing started...It was pretty uneventful...some stinging in the back so more local anesthesia was added, and some real pressure in the front right (because the pin got close to the top of the eye socket). But once it was in I was fine.

Next step, MRI. So I was wheeled to MRI, where additional pieces to the head gear were added. It was odd, when the extra weight of the additional pieces were placed on the headgear, my teeth hurt. I'm sure was related to the fact my jaw was the only part of my skull that could still move freely and the weight seemed to settle there. Then I was given ear plugs for the MRI...which was a nice gesture but totally ineffective. Putting ear plugs in my ear, when I have 4 metal screws drilled into my skull and I'm going into a large magnet probably isn't going to help. The entire time I'm in the MRI (about 45 minutes), I'm praying, please don't let there be any new spots...over and over.

After the scans are reviewed by a team of 5 people (the two doctors already mentioned, 2 physicists, and the RN), I'm told that "there is nothing new...so this should only take about 30 minutes. The nurse came in and told me this his HUGE...that almost invariably a person comes in with two or three but after the MRI the day of the procedure, the total usually climbs to 8 or 9.

From here, I'm wheeled into the radiology room. The additional pieces of the headgear are added again (with the same strange sensation to the teeth). I'm rolled into the gamma ray tube similar to an MRI...and I - Fall asleep. You don't feel anything or hear anything, so I just collapsed and let the stress of the morning roll off of me.

After the treatment, they monitored me for about half an hour, then unscrewed the headgear, treated the holes with antiseptic and bandages and sent me home (where I crashed for several more hours).

September 26, 2016

Back at work today. The screw holes are still tender and I've had this odd discomfort around my skull, but no real pain, and all and all the procedure ended up being uneventful.

We will see how my stamina holds up, as I have fatigued quite a bit late in the day over the weekend.

Thoughts and prayers with you and your family. Rooting for you from Florida. I hope journaling like this is therapeutic for you.

Thanks Craig...

All my best. Will be reading.

Thanks Digamma...I appreciate all the support.

Thoughts, PRayers, virtual hugs and I will be reading..

Thanks MG...

September 28, 2016

Today is the day I start the screening process and sign the paperwork to join the clinical trial. I'll probably be poked, prodded, and scanned 6 ways to Sunday. The hope today is two fold.

1. Have all the tests come back within normal ranges so there is no item that would exclude me from the trial.

2. DON'T HAVE ANY NEW SIGNS OF CANCER SHOW UP, ESPECIALLY IN ANY NEW PLACES.

Will you hear back today?

September 29, 2016

So I finished with the screening yesterday and it went better than I expected. I was thinking that because of all the tests (waiting) and traffic that it might be close to 7 before I got home, but as it turned out I was home at 5:15.

The day started with me signing up for the clinical trial, agreeing to allow them to take blood or tissue whenever they deemed necessary. As well as agreeing to not have any more children (which was odd, but the organizer said it was a requirement and that she has to get 80 year olds to sign it as well). From there it was a quick vitals check, which worked out fine:

Weight: 186 (fully dressed)
BP: 108/68
Pulse: 82
Oxygen: 96
Temp: 97.7


Then on to labs, where I had to provide a urine sample (which wouldn't have been a problem if I hadn't gone to the bathroom right before walking into the clinic). Plus blood taken - 7 full vials worth. When I saw how much they were going to take, I asked if I'd get some apple juice or a cookie after donating blood.

After labs I went to get an EKG...which would have been easy enough if I wasn't sent to the wrong location........TWICE! So initially the nurse told me to go to Clinic A, so I found the clinic in building A, which was the only thing that seemed to fit. They informed me I was in the wrong place and directed me to the testing center. I found that, logged in, and after about a 20 minute wait, was again told I was in the wrong place. I was sent this time to the regular cardiology department, which was correct. After a short wait, I was called back, where a new tech was being trained on how to do EKGs, and it took about 5 times as long to get me patched and hooked up as it did to actually run the test. The heart rhythm apparently looked good because the tech made a comment about it while it was printing.

Then off to radiology for the CT Scan. I was called back, tapped for an IV so the contrast could be added quickly, then moved to a "behind the curtain" waiting room. During my move into that waiting room, and older lady was getting into a wheelchair to be rolled out. We exchanged some funny comments and teasing then before they wheeled her off, she took my hand and prayed for me. It was a bit overwhelming...

I was taken in for the CT Scan after a short wait. They did a couple of scans before adding the dye. Then repeated the process with the dye. The tech confirmed all my organs were present and accounted for.

While I'm now finished with the screening, I (to answer Craig's question above) don't know any details and probably won't for several more days. Fingers are crossed and saying my prayers that I won't be disqualified and they won't find anything new.

On it!

September 29, 2016 (part 2)

About 24 hours after my ct scan, I have broken out in a major rash. It is apparently an allergic reaction to the contrast. Thankfully I only have a rash, no problems breathing or swallowing. Right now the doctor has me taking 50mg of Benadryl every 4 to 6 hours.

Man this itches...

First off, praying hard for you and sending all the positive vibes one can muster. Will be following your journey and rooting you on. All the best to you and your family!!

Thanks BYU...

October 3, 2016

On Friday (Sept 30) my rash was no better, so I called in to let the Emory doctors know. After some run around including this brilliant statement by one the coordinators "You really need to let us know you are allergic to contrast before we give it to you." Really...like I knew I was going to have this type of reaction and just forgot... I was able to get a prescription for steroids. It took several days, but finally today, I starting to see the rash clear and getting some relief from the itching.

I'm still waiting to hear when I go down to Emory to start taking my Xalkori (that's the ALK inhibitor).

Following this, wish you the best, really admiring how strong you are.

I have a friend with lungs cancer too, in his case is mainly because smoking. So far after 2 years, surgery and some chemical phases he looks clean and optimistic, so you never know.

Thanks Icy...working on staying upbeat. Figure there is no point in being depressed, it won't accomplish anything.

October 6, 2016

My two week radiation wash out period is now over. Unfortunately, I don't know anything more about when my treatment is supposed to start. When I was at Emory for my screening process, I requested getting my day set up, but was told that they needed to work through Monique (my onboarding coordinator), and she was currently unavailable. They were going to reach out to her to get that set up though. I asked again on Friday when I was talking with the receptionist about my rash, and I followed up again yesterday and was told they were working on it at that minute. Of course, I still haven't been contacted. It's really quite frustrating, and honestly I expected more from Emory.

On a personal note (which I figure I should share otherwise this becomes more of a log of doctor's visits), a couple of days ago I had probably my first real overwhelming emotional moment while I was at work. I was listening to music on Spotify and St. Judy's Comet came on. That's the song that I sang to my boys when they were babies and I was putting them to bed. I hadn't heard the song in years and it brought back so many memories and emotions for my current situation that I was overwhelmed. I really struggled for quite some time to get myself back together. I was close to just heading home it was so impactful. Honestly, just writing about the experience is difficult...

Hopefully, I'll hear from Emory today - If I do, I'll update the thread.

Nothing of value to add but I just wanted to comment and let you know that your words are extremely powerful. Thank you for sharing and I hope it helps you in some small way as you fight this battle.

I'm here and hoping for the best for you, Breeze.

Also reading along and pulling for you. No idea how I would react in this situation, but my guess is not as well as what you have described.

How old are your boys?

Hey hoopsguy,

The boys are 16 and 14. I also have a 14 year old daughter, but I didn't sing St. Judy's Comet to her (if you listen to the song you'll know why :) ). I'm hoping the Xalkori (and potentially the second phase ALK Inhibitor drug) keeps me around for a while so they can start there own life. One of the hardest things to deal with is the thought of leaving them without a father while they move through high school and into college.

Thanks for the well wishes and for reading along.

Hey Kodos, thank you...

Hoping you get word back from Emory ASAP. I would have to think the constant waiting for results, direction, etc. has to wear on you the most. I have a lot of admiration for the strength you have shown in this thread.

October 7, 2016

Still no word on a time for my visit (though it does look like it will be on Tuesday). However, I did just follow up with my coordinator to remind her that I have to request time off for this visit and I need to let the company know when I'll be out as soon as possible. She responded with the following:

"Eligibility was just confirmed by the sponsor yesterday and a request for your schedule was made the same day. Will let you know as soon as something is posted."

So, apparently the biggest delay was the sponsor reviewing my application to be in the clinical trial. And, looking at the positive, it looks like I've been approved...

October 10, 2016

Finally have my appointment scheduled. I'll go in to start treatment on Wednesday at 10 A.M.

Good. Wishing you the best with this new therapy.

October 12, 2016

Today is the first day of what will be my new life. I am going to start my treatments which hopefully will run for a long time. Here are my hopes:

- The Xalkori is effective for me. It is for around 80 to 85% of ALK patients.
- The Xalkori is effective for a long time. The longest my doctor has seen is 4 years (I'd take that in a heartbeat, but half that long would still be good)
- The Xalkori doesn't have significant side effects
- That my liver handles the metabolism of the drug well
- That I'm capable of taking the Xalkori (no reactions)

I think that pretty much covers it. This is a crucial day for me. If I struggle or have a reaction to the drug then the benefits of targeted treatment will be lost and I'll probably end up in standard chemotherapy, which will shorten my life expectancy significantly.

Also reading and pulling for you.

Hope you get the answers you want today.

You're in my prayers Breeze. Stay strong.

Praying for the desired outcome

Praying for you!

October 13, 2016

Yesterday was a long day...had to head down to Emory after dropping the kids off at school because with traffic 10 A.M. across town is a difficult thing to judge. We ended up at Emory about 40 minutes early, but we checked in and were quickly taken into the Phase 1 treatment center, which will be my treatment location for everything (sans scans) moving forward.

Everything started as it always does with a check on my vitals:

Blood Pressure - 133/92 (ok this was extremely high, but I put it down to stress and having to drive for 1.5 hours in Atlanta traffic)
Weight - 186
Oxygen - not checked
Pulse - not checked

Next, blood was drawn for labs and sent off to be examined. In fact, we had to wait for them to be returned before we could proceed. They came back clean, so I was then given an EKG, which also checked out fine. Then the pills were delivered, and I took my first one. I did find out that I am on the strongest does they offer - 2 x 250mg. Apparently they offer 2 x 200 mg and 1 x 250 as options. I'm guessing I'll continue on my 2 x 250 as long as my body can deal with it.

About 30 minutes after taking the pill 2 things happened. First, I had a slight twinge of pain in my right ear/jaw/neck, which quickly went away. Second, I had...how to describe this...it wasn't a feeling of euphoria, it wasn't that strong, but there was definitely a bit of a buzz. Initially, I thought it was caused by the pill, but after some reflection and not experiencing the same thing after taking 2 more I believe it was actually caused by 2 things:

1. A stress relief - having gone almost 2 months from diagnosis to treatment, I was probably more stressed than I realized and by taking a pill I knew I was finally doing something about it so my stress dropped

2. Adrenaline - Having taken a pill of that strength and knowing how important it was for me moving forward, being concerned about the side effects, and similar concerns and thoughts, I believe I had a bit of an adrenaline rush.

A second EKG was done 2 hours after taking the pill, then I was released. Also had a second set of vitals taken this time my blood pressure was 118/82...

For the most part things have been good. I won't get into what has happened, I don't want to disgust anyone, but even it wasn't terrible. I am at work today, but I came in late not wanting to be trapped in the car in traffic for an extended period of time. Thankfully, the owner of the company was accommodating. I'll probably need to continue that practice for a while until I have a better understanding of what my new normal is.

One other note, the jaw pain returned last night which I thought was odd. I can also tell it is still there a bit today as well (though I can easily ignore it). I'm just not sure if this is related to the pill or just a coincidence (this is part of that not knowing what is normal anymore).

Hopefully, things continue to go well. Thanks for all the well wishes guys. They are appreciated more than you know.

Here's hoping your body reacts well to the Xalkori, Breeze.

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

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...

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.

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.

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.

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).

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.

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...

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.

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... :)

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.

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.

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.

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.

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...

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.

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

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...

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...

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.

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.

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.

Thanks GB...

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.

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

:thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:

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

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.

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.

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.

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.

Great idea.

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

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.

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.

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.

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

Good work on the liver enzymes.

Great news on the Liver enzymes!!

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.

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.

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

(Continue to) Hang in there!

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

Thanks CU and garion...