Cycle 1 Summary "Detours"


I'm a Randonneur and an Ultra-Cyclist.  To play these games, we all agree to follow certain rules.  Stay on the agreed-upon course.  Stop at the checkpoints or controls.  Don't take shortcuts.  It's really not that hard.  We just ride what we say we're going to ride.  Work is the same, do what I say I'll do and (usually!) when I'll do it.  And that's how my whole life is wired... until chemo.

November 2nd, Doc Dean lays out a plan and we both agree:  4 cycles.  Each cycle to be 2 weeks on, 1 week off.  3x/week.  I'm even given an option to do it over 4 weeks to have a better chance at a 200k ride day, but I tell him I want to stay on the recommended course (LOL, lots of bicycle analogies).  Tell me what to do and I'll do it.  My brain rewires to process and I'm on board.  Let's do it.

Instead, my chemo "plan" or "course" is starting to look more like the artwork I did above for one of our information controls/checkpoints!

Week 1 (Nov 17): I did good!  LOL non-stop hiccups, some queasy, some unsteady but no extra drugs at home and I was a very good sitter for my 3 sessions.  Most symptoms were ok with lots of ginger and Cracker Barrel Chicken & Dumplings :)  Both helped me avoid the additional nausea meds during the day.  Since my first chemo day was the day after having the port surgically installed in my chest, I think I did fine this week.  Checkmark!

Week 2 (Nov 23): "I" did good, but I was crushed to learn my insides did not!  All my critical numbers plummeted.  White Blood Count.  Platelet Count.  ANC%, Neutrophil Count.  Things I'd never worried about.  I have a Gold Star, A+ immune system!!!  All I worried about were the kidney function numbers, which stayed tolerable after week 1.  Sorry Pam.  No chemo allowed today, but we still want you to come back for the balancing, flushing, hydration appointments this week and we'll try again next week.  Detour.

Week 2A:  I threw everything I could at my immune system.  Vitamin C til my body finally yelled it had had enough.  Awesome proteins.  Elderberry.  Quick Defense. Zinc. D.  Couple short rides to get my mojo going.  Some short resistance workouts.  I was an active participant and was excited to go to chemo and see my numbers.

Week 3 (Dec 1):  Was getting miffy because my port blood draw didn't happen til I'd been doing red tape and waiting for at least an hour, but it did get done and results were fast, maybe 30min.  No substantial change in ANYTHING!!  NOTHING!!  I was crushed and had a few despairing moments.  Friends had already told me I might be put on meds to put my bone marrow into hyper-drive.  These drugs would then wring my bones out to get all the numbers up... and it's painful to your bones, especially hip and thigh bones.  Oh goody.  I agree to:

  • Zarxio Brochure - these treatments are called colony-stimulating factors (CSFs)
  • 3 Doses.  24hrs apart.  3 different locations.  (Wed, Thu, Fri)
  • Hope is I don't have to do this each cycle and that maybe my body will get the message and start creating on it's own.
  • Side effect list is as long as all the other poisons, including spleen rupture and kidney damage as the first ones listed!
  • Most expected effect for me to notice is bone and joint pain.
What DID happen was minimal bone/joint pain but a kinda scary 24hr period starting Friday late afternoon.  High heart rate. Chest tightness/pain.  Dramatic headache.  Overwhelming fatigue and unsteadiness.  Fatigue remained but the other symptoms pretty much stopped after about 24hrs.

PET SCAN

During this time of Zarxio, I also had my first full-body PET scan (Dec 3), which was requested due to questionable masses in lymph nodes that my be cancer.  PET stands for Positron Emission Tomography and it was more involved than I realized.  (another science nerd alert!!).   Interestingly, to image cancer, a radiopharmaceutical such as fluorodeoxyglucose (FDG), which includes sugar (metabolized at a higher rate by cancer cells) and a radionuclide, is injected. Because cancer cells metabolize sugar at higher rates than normal cells, the FDG is drawn in higher concentrations (called “uptake”) to cancerous areas, so they glow on the scan as a bright, heat-image of active tumors!

Since FDG is attracted to sugars in the body, a low-carb, low-sugar diet is required for 24hrs, in addition to a 6hr fast.  Blood is required to have a sugar level of 70-174 mg/dL... mine passed with a 74 :)  

A PET scan also requires no exercise for 24 hours because normal muscles accumulate little FDG, but muscles exercised just before or around the time of the scanning can show intense uptake into those muscles—possibly mimicking cancer.


Combining a PET scan with an MRI or CT scan can help make the images easier to interpret. At left is a CT scan, while the center image is from a PET scanner. The image on the right is a combined CT-PET scan. The bright spot in the chest, seen best on the PET and CT-PET scans is lung cancer.


My process:
  • No exercise for 20hrs (I repeatedly verified this was ok because I did a weak spin the night before before realizing I wasn't supposed to)
  • No food for 6hrs
  • Arrived over-dressed per their "dress warm" instructions
  • Blood sugar tested
  • RN and 2 students came to inject my port
  • Then... sit for 1 hour.  No reading.  No phone.  No lights.  No activity at all.
  • Scan itself took less than 30minutes
  • And now I wait :)


Week 4 (Dec 7): Today, the goal is for this to be an off-week, but the calendar doesn't decide that, lab reports do.  Sigh.

TAKEAWAYS

  • I'm not going to know about upcoming/potential detours until they happen!  Need to be open to a new surprise each week.  
  • Similarly, only the next 4 days can ever be planned.  Throw away future calendar projections and just be glad when a cycle completes.  
Both takeaways challenge me.  If you just tell me the finish line, I WILL GET THERE.  But if you change the course every 50 miles of a 750 mile event, I will struggle after a few detours.  If you change all the checkpoints at the last minute, I will struggle with being accurate.  If you add or change rules I never knew about, I will struggle with confusion and motivation.  

So, I feel like I'm constantly reciting the Serenity Prayer:  

“God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

Either way, I'll be on board by the morning and my focus will be on the climb again.  Failure is not an option :-)

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