living with cancer

When we try to make sense of things that are
not for us to understand
the result can be confusion
and longing for clarity
         when there is none.

Who sits in the dark
awaiting our entry?
         although we each have guesses
     no one of us really knows
for sure.

Is it G*D
         ...or Jesus
         Gautama Buddha
         Deganawida
For whom we wait ? ? ?
     All one and the same some say
     For they are all prophets and gods in different tongues

Heavy can be the heart burdened with
     the certainty of illness
     and the uncertainty of time of passing

To some extent
it is the physical suffering we experience
     ~ and that we cannot bear ~
     while still in this realm
     more than the fear of passing

And yet
     it is not out of order
     to wallow in aweful wonder
as to whether or not
our beliefs of the post-physical
     might not be exactly as we might hope.

Go strong.
Be with those passing.
And remain constant
     while without fear.

living with cancer - update

My friend has made it through radiation and chemo treatments. The docs at the VA are getting ready to send him home. Since it is still difficult to eat anything but soft mushy foods [and bland tasting things, at that] he is still "eating" with a j-tube, a plastic feeder inserted into the stomach. Eventually, when removed it will scar over.
     The prognosis is good, albeit guarded. Survival rates for esophageal cancer are not high - however, they are also not unheard of. What is working in his favor is that the cancer had not spread to other parts of the body [that is, it had not "metastasized"] and - when viewing the area by CT Scan in October, the size of the tumor had shrunken significantly.
     He's also lost weight and strength, so he will have to build back up. That he'll have to do through outpatient treatment.
     Then, toward the end of January, he'll go back for another CT Scan and the docs will discuss whether or not surgery is necessary for removal of any remains of the tumor.
     Understandably, he's nervous about the whole process. For those of you who have been supportive from a distance [i.e. providing prayers and wishes for good karmic energies] your efforts are appreciated. Thank you.

living with cancer - poem

at a psychic crossroads

The temps are cooler and the sky gray
I wait for nothing
yet remain filled with anticipation

wondering about the geometry of pain
            and how that fills the area
            consigned to it

my brother, my dearest friend
            and his cousin
            cancer victims all
I track their symptoms
            and treatment progress
all hostages to uncertainty
            and exhaustion

for the time being
my workplace attentions are gone
the plights of the perpetually troubled
no longer are tied to my plights
and once uncoupled
            disconcertingly easy
            to step away from
            at last

Onward to Art
        and land use planning

living with cancer - transfusions

I sat with my chum during half of the day while he received transfusions. They started at 1400 hours; he wasn't back to his room until 2200 hours. No TV to watch; just the intermittent conversations one overhears in an emergency room setting.
     Toward the end of administration of the second bag of blood [I'm certain there is a more medical sounding term than this] his temperature begins to rise. I don't know much about this so I ask for the nurse to look into it. She comes in and ~ to insure accuracy ~ takes his temp with three different thermometers. He's gone from 99 [upon admission] to 101.7. He groans and says to me that it seems he gets sicker almost every time he goes through this.
     In the process I learn that occasionally people can have reactions to blood, usually causing shivers and a temperature. I guess no one has told him this.
     Apparently, this reaction is common enough that there are even specific procedures and protocols to follow when this occurs. I found a helpful [albeit somewhat dry and technical reading] information page about "Adverse Reactions to Transfusions" on the website of The Royal Children's Hospital, Melbourne, Australia. It provided the standard disclaimer: "Warning: This website and the information it contains is not intended as a substitute for professional consultation with a qualified practitioner." Likewise, my discussion here is the same.
     BUT... now I know that this reaction, while certainly not hoped for, is not rare nor abnormal. Just... somebody might want to let you know ahead of time.

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IMAGE CREDIT: Cutbook image from the web page of The Lymphoma & Leukaemia Fund (Wales), affiliated with Singleton Hospital, Swansea, Wales.

living with cancer - chemo

Bill's chemo treatments have begun. Thanks to my brother, Ken, who is also getting chemo/radiation, I now know that the difference between the two.

Radiation is intended to attack the tumor itself, and treatments are done daily.

Chemo is done less frequently and is a "wash" through the body, intended to go after other, loose, cancer cells floating about the body.

Both interventions can be intense and exhausting.

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IMAGE CREDIT: Your Medical World

living with cancer - watchful waiting

I am a patient man but when waiting for a medical procedure to be started I don't have a lot of experience with this, so I talk to other people and scan the internet.

For the second source, I am more cautious; don't want to get caught up with laetrile [apricot pits or B-17 mega-doses] or psychic energy bracelets, since I suspect that mucking about with experimental therapies [the former] and placebos [the latter] may be a bit late in the game, and, besides, does B. even want to consider then now?

But treatment hasn't started, in large measure due to other complications that might be minor when having a broken leg recast; but major when considering the potential effects of chemo if, say, one's immune system is already compromised.

So I am drawn to learn more about the idea of "watchful waiting." Watchful waiting is not a euphemism for doing nothing, but rather it is the decision to delay treatment in favor of careful monitoring for the progression of cancer. Watchful waiting may also be referred to as expectant management, conservative management, observation, or surveillance.

I realize that some of the sources I have looked at identify cancers other than esophageal cancer, but I suspect there is wisdom to be gleaned from these other sites as well.

Cancer Research UK notes that

"...It is hard enough to cope with a diagnosis of cancer. If you then have to wait a few weeks or months to have scans, or begin treatment, you are likely to feel very frightened and frustrated. Many begin to worry that the cancer will spread during this time. But cancers usually grow very slowly and this is not likely. Most cancers develop over many years and do not show up on a scan until they have been growing for some time. So waiting a few weeks for a scan or treatment does not usually affect how well the treatment works.
     You will start your treatment sooner if your doctor feels your treatment is urgent. Your doctors would not make you wait weeks for treatment if they thought it was going to reduce your chance of being successfully treated.
     It may help to let your doctor know if you are worried about waiting for your treatment. It is likely they will be able to reassure you that although waiting a few weeks for treatment is very hard, overall it will not change your outcome."

Of course, on weekends, the specialists are not likely to be around to reassure you. And the on call doctor may or may not know anything about your case, condition, or frame of mind.

As one sitting beside the bed, the angst remains high as well. But, as the folks say, you watch and wait. I pray for an end to the set backs.

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RESEARCH SOURCES: 1- Cancer Research UK ~ Waiting times for tests after diagnosis; 2- Prostate Cancer Treatment Guide ~ Watchful Waiting Description; 3- The Wandering Visitor ~ Are you the on-call doctor?

living with cancer - communications at the hospital

The patient should have an opportunity to ask questions to elicit a better understanding of the
treatment or procedure, so that he or she can make an informed decision to proceed or to refuse
a particular course of medical intervention.

This communications process, or a variation thereof, is both an ethical obligation
and a legal requirement spelled out in statutes and case law in all 50 states.
American Medical Association / Web page describing "Informed Consent"

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Last week Bill developed what might have been a "mild" case of pneumonia, however "mild" a lung infection can be at the same time one is hospitalized for cancer.

I suspect he even knew ~ intuitively ~ that he had contracted it. He'd been coughing some one day last week when I visited. We went downstairs, sat in the yard between buildings one/two and the older complex, and he mentioned something about getting an infection.

He did not go for radiation/chemo on Friday. Sat the weekend anticipating going Monday but when that came nothing happened. Oh, no, he was moved to a new ward. We knew that was coming.

I called early this morning to find out what was going on. Today, he learned at 1130 that he was not going for treatment again today. No reason provided. He got anxious. Over the phone I heard someone telling that someone from oncology was coming to see him.

Still with no answers I left work to see what was going on. As I was pulling into the VA Center, a call came from the oncology team. He had pneumonia. Yes we told him. He ought to have known that we won't treat him while he's getting antibiotics... but not to worry since the growth is slow and this should be resolved by the end of the week [meaning, I suppose, that treatments start next week].

One of the most frustrating things to deal with is not knowing. As I drove toward the center [made it in record time ~ less than half an hour] I kept thinking the worst. This is a repeat concern. Bill keeps asking to be told what's going on. So do I.

Might have to just move in and park myself in order to know what is going on.

Again, all that said, people working here are not uncaring; too busy sometimes, perhaps ~ which can happen at most any hospital. Yet the docs don't communicate their knowledge until after the frustration tipping point. Don't they get it? In the process of being an informed consenter getting the details from the docs does not seem to be too much to ask for.

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IMAGE CREDIT: Lungs Home Health which touts iteslef as "the UK's leading provider of drug testing products, pregnancy tests, ovulation tests, DNA Paternity Tests and home testing kits. The image was found at What Are Lungs?, a webpage put together by Nandini Thogarapalli, a grade five student at Dr. E.W. Coffin School, Calgary, Canada, as a science project that looks at lung cancer.

living with cancer - day one chemo/radiation

Getting started on cancer treatment is a bit like driving into a dark tunnel with no directionals.

I don't know if my friend had his first treatment today. Nursing staff in the afternoon they can't say for sure that he went to the cancer center; the nurse only knew that he was on the ward when she came on duty.

A different nurse, later on, reports that his ride didn't pick him up on time, but remains equally uncertain if he'd gone today for treatment [Shouldn't that be in the record?].

What is certain is that he was moved to a new ward, with nurses who don't know him nor his quirks and eccentricities.

I expect I'll hear a rasher asking "...is it bark or bite" when he lashes out loud and verbal. [It's bark, basically] He's in pain! He's got esophageal cancer! ...and nobody's taking the time to either explain all this or provide a bit of TLC. Surely nursing is more than reading blood pressure gauges and finding another vein to stick.

living with cancer - Road less travelled

The directional signs remain unclear, though it is possible to guess their instruction.

The stress of a cancer diagnosis clearly rests on those close to the victim as well.

Not knowing what the next step might be, nor how to steer the vehicle to get to the desired site, makes one tired and unsure.

One man at the hospital, on the recovery end of surgery, soberly noted that he'd rather be in active combat than go through treatment again ~ the experience indescribable.

Nevertheless, he remained upbeat. Don't lose sight of the end goal, even if you cannot see it in the scope.

living with cancer - Going Haiku

""The price of freedom is visible here"

After four days into the admission with still no real communication from clinicians, Bill yelled out at the nurses. A diminutive, yet authoritative-acting foreign doctor gathers the troops around his bed to tell him he caused a freight by yelling [a behavioral anomaly readily addressed with anti-anxiety meds].

This group's "show of concern" at least provides him the chance to express his frustration's source. It seems the diminutive doctor, rather than having the courage to acknowledge she doesn't know the answers to his questions, instead responds to them by evasive language and seeming coy.

The man just learned he has cancer! Going haiku doesn't help.

When the doctor cannot answer a question ~ and instead avoids it ~ it is normal to assume the worst. On the other hand, a frank admission that you just don't know, while not providing satisfaction, is at least a lot more clear.

What is it about some doctors, so frail they interpret loudly stated verbal expressions of anguish, anger, frustration and loss as potential indicators of lack of control ...of mental illness !?!?!

The irony here is that the West Haven VA Hospital is riddled with posters offering help and assistance for combat veterans with PTSD. And while being diagnosed with cancer is not the same as combat stress, hearing you have cancer can be traumatic, it can be stressful. Is it too much to ask that all clinicians working there at least know this? I think not.

The coy doctor vaguely admitted she did not know what to tell him, and introduces the oncologist, who can, and who provides a clearer description of what the past two weeks of lab tests, procedures, poking and prodding have found. The answers aren't great, but the news is encouraging: that the state of esophageal cancer Bill has is treatable.

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UPDATE: In fairness, aside from the one glitch of a clinician being unclear about details, the care and attention Bill has been getting has been exemplary. Each of the people under Step Down's care have unique and difficult medical problems, yet the staff remain on top of their mission while remaining thoughtful to what the folks they are working with go through. I'm glad they are there.

living with cancer - Pray for BillP

My camera shy friend is suffering after a recent discovery of cancer cells within his body. His less than camera shy pals [Big Boy and Little Guy/Tiger, both shown here] anxiously await his return home.

Right now Bill is at the VA Hospital in West Haven under the scrutiny of oncologists and surgeons.

Uncertainty is arduous.

Right now I don't know what to think ~ or do.

I pray that his difficult ordeal eventually finds him tumor and cancer cell free so that he and I can ride along Chamberlain Highway [plus do a slew of other things ~ some that require a passport] a whole lot more times.

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As I write this I'm hit with a double whammy; for my brother Ken, who lives out in San Diego, has also been diagnosed with cancer the very same week. With Ken I'd like to be able to ride about the Sequoia National Forest on his hog. Mindful of the fact that I could find all sorts of spurious information about cancers on the internet, I do find a trio of articles ~ A Layman's Guide to Esophageal Cancer ~ written by Roger Tunsley, to have been encouraging and helpful. Another article, on gastrointestinal cancers, on the American College of Gastroenterology website, is also quite informative. Two other websites I found helpful include Wikipeada's Esophageal Cancer entry and a link to the Esophageal Cancer Action Network.