Health and dis-ease

I have started a journey in Reiki.

It began with curiosity.  I saw the word listed among services at massage studios and in alternative medicine journals.  I didn’t even know for sure how to pronounce the term (it is RAY-key.)

Well, in the world of alternate energy and thought, the concept of “coincidence” is not accepted.  Every opportunity is regarded as being purposefully offered or attracted to oneself.

Happily, I had an opportunity to “try” reiki after years of wondering about it.  I was at a party at which a practitioner was a guest.  She was offering her talent to anyone interested and was holding her hands above another guest.  When she was “done” and asked if anyone else was interested, I jumped at the chance. 

She stood behind me and held her hands about three inches above my shoulders.  Everyone continued with party chatter and conversation.  I just settled into my chair and waited.  After a few minutes, I had the most extraordinary sensation: I felt as though my shoulders were laughing.  There is no other way to describe it!  It felt that inside each shoulder was a mouth and that it was laughing hilariously!

I was sold.

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.

Anyone who has worked with urban children – sorry, but the generalization holds true – has certainly seen examples of children not being treated well at home.  It happens in the suburbs, to be sure, but there, families make supreme efforts to cover it up.  I maintain that the most important “parent work” happens from birth to age four or five.  Therefore, by the time the children get to kindergarten in public school, if poor parenting existed, then profuse damage has resulted.

The sin may be one of commission, but more frequently is that of omission.  Neglect.  Failure to act.  Examples include failure to talk to the child, to teach him or her language.  Failure to take the child for routine health and dental exams.  Failure to raise her in a safe environment – free from noxious insects, vermin, filth.  Failure to provide consistency in correction or in personal security.  Failure to provide clean clothing.  Stimulation.  Enough sleep.  Running water, heat, and working plumbing.  Much of these situations exist despite available remedies through public assistance and human service programs.

I am not referring to rural Appalachia in the United States.  No, I am referring to almost every city with a measurable population in poverty and more deviously in the suburbs.  If this is difficult to accept, check the local city codes department for the sorts of violations cited in inhabited urban dwellings.  When it happens in the suburbs, excuses or reasons will be offered.  However, wherever it occurs, the damage to a child’s psyche or physical state is done. 

We certainly know that the caregivers for someone with a major, chronic illness can be burdened with many responsibilities.  Whereas the patient can direct most energies into getting better, there is more on the plate for the surrogate nurse.  The usual stress-reduction methods will help.  However, there is an additional resource: the cancer support group.

There are several ways to find a group.  My partner’s oncologist has support group names, addresses, and contact information on a bulletin board in the office waiting room.  Furthermore, local hospitals can direct you to the right place.   In addition, there are virtual social networks whose purpose is caregiver support.

I suggest any of these questions to ask, the desired answer being dependent on your preferences and needs. 

Is the group moderated or conducted by a medical or social services professional?   

Is this group specific enough to my situation (some items may be the kinds of cancer discussed, the age of the caregivers, the age of the patients)? 

Are they imparting useful information or is it neutral (or even harmful) to my mental well-being?

Is the meeting time convenient?  Is the location convenient? 

Is there a way to develop connections so that I could phone someone in between meetings?

For live and virtual groups – is the format one that works for me?

Not all groups are the same.  I found one at a hospital that was very depressing and “misadvertised” as one for caregivers.  It was, in fact, a group of cancer survivors with multiple recurrences of cancer throughout their bodies.   This was NOT what I was seeking!  So, persevere until you get your needs met.