9/16/24: The Holiday You Don't Want: Chemo-Day

I thought it might be interesting to go through what a typical day of chemotherapy is like for me.  Then I realized it's not interesting at all, but I had already did all this typing, so it is anyway.

My chemo is on Mondays (at least so far they have been), but all chemo sessions start with blood test to make sure the body is ready for the poison infusion.  So I get to go to the lab on the weekend to give some blood to the phlebotomist for testing.  I have given so many vials of blood over the last few months to know the staff by name.

In chemo treatment each day is given a number.  So Monday is Day One. 

The rest of Sunday I have to get my "go bag" ready for the next day.  Battery packs, tablet loaded with entertainment,  and anything else I might feel as I need.  Cindy packs her work stuff along with some snacks to keep her occupied while the infusion is going on.

I try to eat a light breakfast and get a little caffeine to increase my mood and energy.  Usually about 45minutes before the appointment time we head to the hospital.  After parking we head to the 4th floor infusion center.

The staff in the infusion center is great.  They usually have my info up and ready before I get there so check-in is a breeze.  The nurse takes my vitals and gets us to a room.  At Kaiser Zion the infusion rooms are private.  There is just a reclining chair and a less comfortable separate chair for Cindy.

We then meet the chemo nurse for the day and go over my medical record and the plans for the day.  The chemo nurse then gets the IV setup in whatever arm they can get the best vein.  Its the most uncomfortable part of the day.  Once the site is ready, the infusions start.  My total time is one of the longer ones as far as I can tell.  It last 4-5 hours.

I am able to get up and walk around, and I try to do so every hour or so, just to say sane.  The nurse is in and out making sure Cindy and I are doing ok.  They have to change the infusion bag several times as well.

Once the last bag is done the nurse removes the IV and we are free to go.  We usually are pretty hungry as its early afternoon.  I have found that I am good to eat almost everything as my side effects that day are pretty mild.  So we eat.

By the end of the day I'm usually pretty worn out so I don't plan much, so I try to get to bed early.

Day Two starts with my biggest issue.  One of the side effects of my chemo is uncontrollable hiccups.  They typically last about 24 hours and are more of an annoyance than anything.  I do take anti-nausea drugs and they seem to be working well so far (knock on wood).  The hiccups usually get more manageable around dinnertime.

Day Three things get back to normal.  I still take the nausea meds that day, but other than maybe needing a nap the Wednesday after Chemo is pretty normal.

That all repeats on the following Monday, Day Eight.  More labs, infusion, hiccups.

My treatment is 2 weeks on then 1 week off.  I really look forward to that week without the infusion.  It's nice to not have to go in for treatment and it gives my body a chance to recover.

That's about it.  Sorry.  I thought this post would be more interesting, but its pretty boring.  But its my life for the last few months.  And it is going to be my life for the foreseeable future.  Don't feel sorry for me-every day is a blessing.  Feel sorry for Cindy for having to put up with me-I'm quite a handful.

 

9/8/24: Previously On...

One of my favorite shows of all time was the Kiefer Southerland show-24.  It was a spy drama that took place in real time so that the events in one hour of the show took place over one hour until the entire 24 day was covered.  But that's not important here.

I think it was one one the first shows that started every episode with the phrase "Previously on 24" followed by a recap of the events in the series so far.

I think now that I am making my experiences more public it might be nice to recap my life over the past few months or so.

Back in April or May I was starting to feel very fatigued all the time.  I was still able to function at work and at home but I was struggling to get the energy to exercise.  I was also having a lot of issues with itchy skin.

I went to the doctor and they ran some tests.  Nothing was conclusive but I could tell the doctors were concerned.  I then started showing a yellowing of my skin.  Jaundice was a big enough symptom to get me to go to the ER and eventually the hospital.

There I underwent a series of procedures over the next few months that included sending cameras and probes down my throat (called an ERCP) and poking and prodding in my abdomen to both try to restore bile flow to take care o the jaundice and to make a diagnosis on what is wrong with me.

I could tell the doctors pretty much knew what was wrong but they needed to take some tissue samples to be sure.  Finally they did get a good sample and officially I was a cancer patient. Cholangiocarcinoma-cancer of the bile duct. 

To make a long story short I have had a number of procedures that have left me with a stint in my bile duct and a couple of drains to help the bile flow.  Chemo is done via a 4 hour infusion 2 out of every 3 weeks.  Time will tell how successful any of this will be.

I had a feeling going back to at least late last year that something wasn't right with me.  I did talk to my doctor but I was pretty healthy I thought and I never really had any medial issues so I just did my best to live with it thinking it would pass.  It didn't.  If I had pressed the issue and asked the right questions maybe I could have caught this sooner and the prognosis would be better.

Its weird but those thoughts were recently echoed by someone I recently read about.  I never watched the show, but the host of Tex Mex Motors on Netflix, Rob Pitts, just died of stomach cancer.  He was only 45.  In his video announcing his cancer he explained he was just thinking he had acid reflux.  By the time it was determined he had cancer it was too late.  He also said to ask questions, get answers and figure it out.

Take that advise out there.  Be your own best advocate for your health.  You know if something isn't right.  You just need to figure out what it is before its too late.

 

9/5/24: Fighting a Battle I Can't Win

This has been a tough summer.  I went from what I thought was a relatively healthy 52 year old (honestly carrying a few extra pounds) to someone with cancer.  And not a good cancer, one that is relatively rare and aggressive.

Since then I have been in the hospital multiple times and had many, many procedures to make my life more livable.  And I get to experience chemotherapy.  And with chemo comes many cool side effects like hair loss (expected) and uncontrollable hiccups (not expected).

Let's get it out of the way right here-Cancer Sucks.  I don't think I really knew anyone close to me who had gone through cancer so I didn't know what to expect, but now that I am seeing it from the inside I can definitely say that its rough. Everyday is a new experience, I never know how I'm going to feel until I wake up.  Somedays I feel fine.  Other days I feel tired.  Somedays I'm mentally strong.  Other days I'm emotionally exhausted.

The thing I am learning is that cancer is not fair.  I see people 20 or 30 years older than I am who drink and smoke who are living normally-not a care in the world is seems.  Here I am. I don't drink, never smoked, exercised daily and I'm the one who has cancer.

I know at some point the cancer will win this fight.  But for now I'm trying my best to battle the inevitable.  Time will tell how long the war will last.