October 2023

Riding through these past two-plus years has been a rollercoaster with more slow clicks up a steep, grinding hill than anticipatory top-of-the-ride views or thrilling descents. This rollercoaster feels like one I imagine in a bad dream, abandoned in a jungle and overgrown with treacherous vines where people are looking at me saying or silently thinking, surely there’s a better rollercoaster… 

But there’s not.  I’m going to get on it.  I’m going to shut my eyes and get on.  People are going to try to get on it with me, but they can’t.  It’s my ride.  They clear the track a bit and try to fix the rails with glue guns.  They reach out their arms.  They offer water.  The help is not completely futile, but it feels somewhat helpless for them and for me. Scary for all of us.  Am I stupid for getting on?  I don’t regret it.  Am I brave?  What better choice is there?  I don’t mean to sound trite, but truly, I am not on this ride alone, even though my loved ones can’t get on the track with me. God is with me. He’s not my co-pilot.  I believe He’s the pilot.  The inventor and builder of the roller coaster. Maybe this ride is better than it looks from the outside?  Maybe each hill, each vine, each twisted rail has purpose? I believe so.  Do I know the exact purposes?  Maybe a little, maybe sometimes, but not nearly everything.  Not clearly.  This is where faith comes in, I guess. I do know that my Savior suffered.  If suffering is good enough for Him, it is certainly good enough for me. 

How about you?  What is your ride like?  Nothing but fun?  A super smooth ride?  All fun and no pain?  I’ll bet not. 

When we found my cancer in June of 2021, I was told that without treatment, I didn’t have a lot of days left in this world.  Like many, I chose treatment. As you know, or have heard, treatment is hard. Why do most people with metastatic, stage four cancer choose it? When cancer has spread extensively, the hope is to extend life while not drastically reducing the quality of said life. People often ask stage four humans (avoiding the word patient… we are more than patients, right?), “How long will treatment last?” Next comes the uncomfortable mic drop. There are three possible scenarios. It will last until I have run out of plausible treatments and then I die.  Or until I can’t take it anymore and then I die. Or I die while taking it. Try explaining that at the church doughnut table!  Be careful what you ask. ;) 

People frequently ask what is cancer like for me? What is treatment like?  It’s pretty hard to explain adequately.  It changes a lot and takes up a lot of time and mental space of every day.  There’s always something it seems.  For example, I get a lot of head pain. Is it from the neck radiation I had which causes a host of issues? Or is it from the cancer in my cervical spine?  Or is it from the cancer in the base of my skull?  Is it from too many toxins introduced by various treatments?  Is it because my system is depleted?  I mean, who knows?  I don’t.  My doctor doesn’t. I do know that laying down with a heating pad helps a bit. Beyond that, it’s a mystery.

In summary, my treatment, etc. thus far:

• So many scans

• Chemo pills

• Neck radiation 

• Endocrine therapy

• Lung area drained multiple times

• Surgically inserted pleural drain put in for two months

• Semi-permanent port-a-cath surgically inserted

• Biopsies - two liver, many in the pleural space, two skin

• Enhertu infusions

• Piqray pills which require diabetes diet and medication as well

• Bone strengthening shots

• Faslodex injections

• Multiple ER visits

• Many complementary therapies: acupuncture, mushroom therapy, 

• supplements, etc.

• Various rigid diets

There’s more, but that’s what I can recall at the moment.  These bullet points are brief, but as you know, each item represents a host of other ailments, side effects, etc. You will notice that there are no major surgeries. In general, stage four patients don’t medically qualify for surgery. (This list does not include my treatments from 2006/2007)

I mentioned above the reasons for stopping treatment, which leads me to my update.  Three months ago I had a scan that showed a LOT of improvement.  The scan looked good, but I felt TERRIBLE.  So, last month I quit one of my therapies because it was unbearable for me. That was hard to do, because it is likely the medication that made the scan look so much better. Currently, I am on my last viable treatment option, which is a monthly injection called Faslodex.    There are some chemotherapy infusions I could try when Faslodex fails, but I’m pretty sure I don’t want to take them.  It’s possible when push comes to shove I will try one… I’ll let you know. I have a scan on October 19.  If it looks the same or better than the last one, I will continue with the monthly injections.  If it looks worse in any way at all, the injections will be cancelled by my doctor and I plan to go off of all treatment (But I do have the option of trying some different chemotherapies than I have had in the past).

I have some really good news couched in the sad news.  Since I am off of the harshest cancer treatments and because I have reduced my pain medications due to the reduction of cancer seen on the last scan… I feel pretty good sometimes!  I have a few good hours in row and sometimes a few good days in row!  I can take little walks, go to the grocery store and work for hours on my computer!  I even did three miles on a trail last week!  A bit slowly, but I did it! My mind is much clearer and my body is a little better.  I have some drive to do things.  I have been given a window of time (length of which is unknown) and I’m so excited about it!  Most of the last two years, I have been wrestling with the idea that I would never feel better, but only worse.  As some of you know all too well, that’s a hard thought to have… one that can induce, sadness, grief, anxiety and lethargy. 

I’ve been a little manic-y the past two weeks.  Talking a lot, making short term plans, working on little projects.  I’m not focusing on the future.  Jesus said not to worry about the future because today is all we can handle in our mental space. ( I’m grossly paraphrasing.) It’s hard not to project into the future, but God is allowing me to stay focused on today.  I feel happy and joyful.  No dread at the moment.  

We just had my younger son’s engagement party.  The wedding is at the end of October.  I’m getting to know my beautiful daughter-in-law-to-be.  I’m leaving for a little road trip with my oldest daughter today. Last month was my niece’s wedding. I’ve got a few trips planned in the next month or two.  I’m trying to hang out with friends and family a lot.  I’m reading encouraging books.  Studying God’s word.  I am happy to feel “myself” some of the time!!! 

I keep telling some friends and family, “Thank you for riding this roller coaster with me.”  In light of what I’ve written today, maybe I should say, “Thank you for watching me ride this roller coaster.” Watching is sometimes harder than riding, don’t you think?  Anyway, thank you, thank you, thank you.  I have so much love and support that I am blessed by.  More blessed than I can say.

 But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Matthew 6:33 & 34

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