Health and dis-ease

CLL is one type of leukemia.  It is the bad overgrowth of white blood cells.  My partner is receiving chemotherapy for this cancer and is now receiving the drug Neulasta (pegfilgastrim) after each cycle of chemo.  This is the supreme irony.  Why?  Because Neulasta encourages the growth of neutrophils, one of the types of white blood cells.

The treatment is not as insane as it first sounds.  CLL is chronic lymphocytic leukemia.  There are about seven main types of white blood cells.  In CLL, the particular sort of white blood cells going out of control is the lymphocytes.  On the other hand, the neutrophils are well-behaved and doing what they should be doing: fighting bacteria.  Therefore, if a patient is receiving chemo to knock out the lymphocytes and this medication concurrently wipes out the neutrophils, there is a problem.  A big problem.  Now, the normal bacteria living on and in people can become a threat.  Thus, the introduction of Neulasta is appropriate.

I am just drop-jawed in awe of Dustin Hoffman’s acting talent.  He can be anyone.    One of the roles he played was a new college graduate who receives advice to look for employment in “plastics.”

Plastics certainly have reduced the number of broken containers on the kitchen or dining room floor.  However, the concerns of the far left, all-natural tree-huggers seem to now be seconded by research institutions.

What are the health field’s uses and concerns about plastic?  I think that plastics have greatly increased sanitation levels.  Disposables may be wasteful, but in an infection-conscious environment, the waste is far outshadowed by the benefits in sterile equipment.

On the other hand, a doctor at Johns Hopkins University raises the concern that dioxins are bleeding from plastic wrap and plastic containers into food.  Dioxins are not good for people.  In fact, they are VERY bad – carcinogenic, to be precise.  This is not good news for all the microwave oven plastic accessories businesses.  Can the population make the switch back to (breakable) glass and ceramic dishes for cooking?

Through a good friend, I just watched a YouTube video which led me to Wiki for more information, which led to a link, which led to another link.  At the end of it all, I came upon a marvelous site:  www.circusofcancer.org.  For those of us who learn by seeing, I highly recommend visiting Circus of Cancer and going through all the chapters in the photo album.  It may enlighten you better than my words have.

I will react to just a few isolated photos and commentary which struck a chord with me.

The accommodations for chemotherapy.  My partner is in the middle of his third round and we have seen good changes at the local hospital where he has received his chemo (treatment is planned by a CLL consortium hospital, but administered close to home.)  For the very first round, he was crammed into a 20 by 50 foot infusion room with no privacy, one visitor chair per patient – all of us sitting hip-to-hip with the patients – and two ceiling-mounted televisions blaring the most obnoxious daytime programs imaginable.  Further insult was that his infusion arm rested on a pillow with a blood stain.  That just heightened the angst of it all.

Happily, for rounds two and three a new wing is finished.  There are spacious areas similar to emergency room areas, with privacy curtains, enough room to wiggle, and individual television sets.  Furthermore, there are many windows and peaceful works of art.  However, the treatment chairs are still pretty much as shown at the Circus of Cancer site.  Nevertheless, as also stated on that site, if one does a little fibbing and finagling, he can score a real hospital bed for the infusion.  As my partner is the CHAMPION of fibbing and finagling, he is very comfortable.

Nurses and personnel for chemotherapy.  Wonderful.  Every single one of them.

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Going to the bathroom during chemo.   This is an activity which we didn’t consider beforehand.  How does a patient go to the bathroom during a possibly six-hour long infusion?  Catheterization?  No.  One must figure out how to sit up, stand up, disconnect the electric monitor, and pull the entire apparatus to the potty.  Then the challenge is how to pull one’s pants down and take care of business without messing up the tubes, needles, and etcetera.  This is why it is a blessing that all the chemotherapy staff are likely to be wonderful, as discussed above.

I am so glad that Kelly Corrigan created the site, Circus of Cancer, which plainly and honestly shares her experiences.  Even more so, I am thankful for her happy state of health.  God bless ya, dear!

Fortunately, life is more than squeaky clean hair or see-your-reflection shine on the wood furniture.  At least, many of us have other pursuits which are important enough that we tolerate an environment which is clean “enough.”  If it is not sticky, smelly, crumb-covered, plague-infested, or staphylococcus-drenched, we are satisfied.

 On the other side, a cancer patient is immuno-compromised.  Furthermore, if such an individual has neutropenia –  a deficiency in neutrophil cells – he is in acute danger of infection.   While perhaps not yet ready for hospitalization in “isolation,” the cancer patient needs something other than your normal environment.

Thus, the healthy caregiver enters the Cleaning Frenzy.  Telephones, doorknobs.  Steering wheels, light switches.  I am currently partial to Lysol ^(TM), rubbing alcohol, Melaleuca and Trader Joe products.  Then there is also the household white vinegar.

Who knows which chemical or germicide is the critical one?  Maybe one.  Maybe none.  Maybe all.  Perhaps there is only a placebo effect for the caregiver, and perhaps that effect is small.   No matter;  I’ll take it.

At least it is predictable:  a short, one-hour  infusion of Treanda and whatever pharmaceutical condiments they give him on the side.  My partner with CLL (in Spanish, we heard on a telephone conference call, it is “say-ellay-ellay”) will feel well enough to drive himself to and from the hospital.  He gets home looking fine, all shaved and bathed.  However, half an hour later the misery begins.

 We have a routine now that we know how it works.  Suddenly, he announces, “I don’t feel good.”  As he steels himself against fainting or collapsing in a dizzy, exhausted heap, I get him to the living room couch.  He takes a pill and is semi-coherent: “Is it cold in here?”  I reply “no,” but I pile on the blankets.  His hands and shoulders shake.  Then it feels like a lifetime of watching and waiting.  Funny, that, because “watch and wait” is a CLL term of art.  It’s what patients do when their white blood count numbers are not so great, but they don’t have extremely uncomfortable symptoms.

I tiptoe around and check on him every half hour.  For now, he is sleeping very deeply.  That is a blessing, because for the rest of the month following these two days of chemo, he has great difficulty sleeping.  As he saws wood with his snores, he tosses off the blankets or pulls them back up.  After a couple of hours, his skin becomes the burning hot that I expect.  His color is white, yellow and purple, too.    

I carefully remove the back cushions to make more room for him on the sofa, now that it seems he will stay there through the night.  As I gaze at him, I wonder how much of the scene could be the same one his mother watched when he was three or four years old.  Sleeping peacefully.  Hands clutching the blanket.  Will Shakespeare knew what he was talking about in As You Like It and the seven ages of man.  My partner has passed the apex of the parabola and is now repeating stages in reverse order.

Soon, I will go to bed - to sleep, perchance to dream of pre-apex, pre-CLL days.