Day +4133: When the day is long…

“…And the night, the night is yours alone…
When you’re sure you’ve had enough
Of this life, well hang on,
Don’t let yourself go
Cause everybody cries…
And everybody hurts sometimes…”

One of the most annoying things and very human things most of us seem to do is try to relate to the moment.  However, Cancer is ultra personal and individualistic. As a patient recounts how they feel, our instinct is to show a supportive emotional connection by highlighting common experience. For instance way back when Karen was in the early stages of the transplant, a friend of mine immediately told me of a relative who had undergone a similar procedure was doing really, really well until he aspirated on orange juice and died. Another equally motivational tale was of another transplantee whom also was doing really well until a car ran over him. 

Other times, it is just that our auto-responses kick in before our situational awareness does.

“Hi, Happy Birthday!” 

“Thank you Karen! You know it is hell gettin’ older.” 

Well actually not, Hell might be in the equation (depending on your belief) if the option for getting older ceases to exist. Although I do understand that degree of difficulty in the gymnastics of living is extreme individualistic; Saint Peter only gave that infected hang-nail a score 1.4.  The degree of difficulty quotient exists to possibly increase that score to 1.5 by using rusty implements to induce gangrene and have the offending nail and toe removed.  I digress.  

I’m not trying to discourage anyone from expressing how they feel. The contact and support is really appreciated. For example, Deb and Mike’s experience and feedback have been invaluable to Karen and me in this journey. We still miss Mike deeply.  

Karen’s niece Susanne simply saying: “Thinking of you,” means more then can be put in words. It is also ok to have nothing to say.

So, now we come to actual topic of today’s blog. 

Pain. 

Everybody hurt sometimes.  

Yes, we all can relate to pain. Heck, I even can relate to the pain to the point of throwing up while driving to the hospital, and passing out in the parking lot while a teeny tiny bit of kidney stone merrily sliced its way to freedom.  The are many degrees of stupid in my personal experience – you get extra points for naming them.

The second thing is, we quickly tend to become numb to someone’s suffering.  Maybe it is a bit of emotional self-preservation or that our attention span has gnat-like qualities.  Our competitiveness also seems to kick in: “Well you think that hurts?!? I gave birth to three 19 lb. gorillas in the back of a Chartreuse Micro Bus!”

Our medical system tries normalize this by the highly accurate and unbiased 1 to 10 pain scale with 10 being the worst pain you can imagine.

Everybody hurts sometimes.  

Well, trying to compare pain between people borders on an exercise in stupidity. The need to understand lessening or increase to aid in diagnosis and treatment, ok, I get that. 

Karen has been sloggin’ through chronic nerve, bone, and muscle pain.  The trigger seems to have been the last bone marrow biopsy. She is on a steady diet, every six hours, of short and long acting narcotics which seem to be less effective each day. As previously discussed, her blood counts continued declining this week. The ANC of 0.41 means she had to start taking prophylactic antibiotics again. The platelet count is low at 17 but not critical (< 10); it does, however, eliminate the possibilities of Nonsteroidal anti-inflammatory drugs (NSAIDs) and steroids which are immunosuppressives.  

The trick – well, one has to be able to keep the meds down long enough for them to function.  That has been problematic. Pain screws with all physical and mental processes – the body wants it dealt with in the “now” timeframe. 

Saturday afternoon, I dropped a note Karen’s doctor to request imaging of lower back and pelvic regions. Dr Gojo is very responsive and the order has already been placed. Scheduling, unfortunately, will have to wait until Monday.

We are hoping to at a minimum identify what is going on.  Again, as with all things cancer, this may not be a simple answer or even answerable. The fibrosis in the bones, the difficulty of the biopsy, the potential of nerve damage, or unrelated bad luck may all be in the mix. 

Not knowing anything lets the mind wander freely to the worst possibilities. Currently her mobility is limited, but she can get around, if somewhat unsteadily. Sitting is also painful to the point of being prohibitive after more then a few minutes. 

The second trick is even if the imaging identifies the issue with pinpoint certainty, the state of Karen’s disease may preclude any treatment. One of the concerns in adding the second chemo drug next cycle is that it tends to suppress blood counts further. More to be determined later in the journey.

The things that drives Karen is the ability to have good moments. It is all very frail.

The scales seem to tip very quickly.  

For completeness, update from last Thursday’s bloodwork:

Bloodwork: 21 March / 24 March
White Blood Count: 2.38/ 1.96
ANC: 1.05 / 0.41        
Red Blood Count: 2.54 / 2.54
Hemoglobin: 8.5 / 8.3
Hematocrit: 25.7 / 25.4
Platelets: 21 / 17 

Blasts 1% / 3%

Abnormal Cells Confirmed 

Cheers,

Michael

10 Comments:

  1. Ok…. blog disappeared …reappeared …got the comment in between…sorry, giving me trouble …

  2. You made me laugh with the giving birth to gorillas comment 😜

  3. Thank you for being there.

  4. Everybody Hurts-REM. And I can;t even begin to imagine what it must be like to deal with chronic pain. Especially chronic pain that painkillers don’t really help with. Thinking of you both.

  5. Not sure if there are other Mike and Deb’s, assuming there are not, I miss him too! Going through treatment/transplant is very personal and not all understand the ups and downs, worries and gymnastics that encompass our lives. The daily routine weighs on both the patient and caregiver in different ways, still it is hard to imagine walking in someone else’s shoes. We each travel a different path on this road. Much love to both of you and thank you for sharing.

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