MY JOURNEY WITH CANCER

Where did the term cancer come from?

[HINT: Mouse-over hyperlinked words to see them more clearly.] According to many sources, the Greek physician Hippocrates (460-370 BC) described the first case of cancer. It was breast cancer in a woman, and the cancer was so advanced that there were what appeared to be tentacles radiating out from a central point (which were likely blood vessels.) It reminded Hippocrates, often referred to as the Father of Medicine, of a crab, hence the term cancer (the Greek word for crab.) But in fact, even before Hippocrates, circa 3,000 B.C., cancer was noted in Egypt. The Edwin Smith Papyrus documents eight tumors of the breast and concludes “There is no treatment.” According to the American Cancer Society:

“Hippocrates used the terms carcinos and carcinoma to describe non-ulcer forming and ulcer-forming tumors. In Greek, these words refer to a crab, most likely applied to the disease because the finger-like spreading projections from a cancer called to mind the shape of a crab. The Roman physician, Celsus (25 BC – 50 AD), later translated the Greek term into cancer, the Latin word for crab. Galen (130-200 AD), another Greek physician, used the word oncos (Greek for swelling) to describe tumors. Although the crab analogy of Hippocrates and Celsus is still used to describe malignant tumors, Galen’s term is now used as a part of the name for cancer specialists – oncologists.” Blue Crab. Photo credit: Hong Vo (Shutterstock)

One further note. In addition to an enhancing-bladder-lesion-suggestive-of-a-urothelial-neoplasm, I also seem to have Asperger’s. I don’t have a formal diagnosis, but my wife who is a high school teacher picked up on it shortly after we met, and I admit I do have most of the hallmarks of Asperger’s. This, in itself, is a challenge for her on top of everything else (and for me as well.) So, the events which follow will be described from an “Aspy’s POV.” Sort of a neuro-atypical account of a uro-atypical bladder.

Friday, January 20, 2023

At this point I should probably include a disclaimer. I am not a physician and this blog should not be considered an alternative to professional advice and care. I’ve documented facts, many which come from reputable medical sources. I include my own personal experiences with cancer and my own personal opinions and do not suggest that your outcome will be the same as mine, whether for good or for bad.

Yesterday was a day of waiting, as tomorrow, Sunday and Monday will be as well. Tuesday, I meet my urologist when he starts to add color to the mural in front of me. My late wife had three bouts with cancer, so I fully know how slow time seems to move when you’re waiting for a diagnosis, a treatment plan, lab results, and whether your cancer will return months or years later. We’ve been encouraged to verse ourselves in the treatment alternatives, but until we know what sort of cancer I have, and what stage it’s in, we can’t choose whether to walk through Door Number 1, Door Number 2, or Door Number 3. This reminds me of the quantum physics theory (Many Worlds Interpretation) where there are multiple copies of you in as many multiverses and each makes a different decision. Each copy of you is (for example) driving down a lonely road at night, when a deer runs into your path. In one reality, one of “you” hits the deer, then, another “you” in another reality steers left to miss the deer and a third “you” veers right in the third reality. Each “you” experiences the exact same scenario, but reacts differently and there are different outcomes, either better or worse depending on how each copy of you responds. And at the moment, I’m like Schrödinger’s cat (neither here nor there.)

But a part of me wonders whether I haven’t already passed through a different sort of door when I first discovered I had cancer. Now, the remainder of my life will be cast in more somber tones in many ways. They’ll still be good times and likely some bad. But just as one leaves the airey piney woods of eastern Texas headed west, the terrain transitions from pastoral fields and gently rolling hills into a somewhat harsher reality than previously seen. Parts of west Texas are brutally hot, waterless and unforgiving. There is less margin for error, and a vague sense of unease to the traveler.

Should I opt for radical surgery (a cystectomy?) There are a lot of risks for someone my age with my comorbidities. How about just a resection of my bladder? Or, should I go for something more conservative, like radiation and/or chemotherapy alone? Then again, there is a continuing, critical shortage of the medication of choice for bladder cancer (Bacillus Calmette-Guérin or BCG). That will likely affect the treatment plan, perhaps even the ultimate outcome? For now, we’re trying to remain upbeat and optimistic.

I am a Christian

I am a Christian. I believe in prayer and I believe in miracles. I also believe that in many, many cases, God allows nature to take it’s course. Eleven of Jesus’ disciples were martyred and did not rise from the dead in this life. John died of old age. He died. His heart stopped. Luke was a physician who very likely practiced his art when he wasn’t writing down early Christian history in what we call “The Book of Acts.” At some point, something caused Luke’s heart to stop, too, and it did not recover normal sinus rhythm.

How would someone respond to the knowledge that they had some deadly disease that would limit their time on earth? Most likely, an alcoholic would reach for the bottle (again.) A chronic smoker would definitely need a cigarette while they pondered their options. A dope fiend would be looking for “tickets to Disneyland.” A Christian who is true to his or her convictions has nothing but faith and prayer to resort to. And, modern medicine which God has provided for all. So throughout this diary, I will make reference to faith and what I believe God is revealing to me.

Monday, January 23, 2023

Puzzles

For the past few years, I have been trying to reconstruct my life, my relationships, my accomplishments as if they were all part of a prodigious puzzle of sorts.  Like a mural or a montage spanning nearly three quarters of a century.  Sort of a 5,000 piece jigsaw puzzle where each piece represents an event, a failure or success, a place where I lived, a birth or a death of a family member, of a friend, etc.  The majority of puzzle pieces are already in place, and I can faintly identify the design of the final product. I can guess at the gestalt of it all.

Most of the puzzle pieces are pleasing pastels and portions of shapes or faces with appealing tones.  But then there is this one odd piece that came with the puzzle.  At first it doesn’t seem like it belongs.  It strikes a discordant chord to the overall harmony of the scene.  It is dark, mysterious, foreboding.  Intuitively, though, I know I cannot complete the puzzle and eventually reach what Erik Erickson refers to as integrity until I accept and fit the final but frightful puzzle piece into the overall tile that lies before me.

That puzzle piece I know represents cancer. For now, I am focusing on the remaining pieces to the exclusion of this singular piece, but certainly the puzzle will not be complete until I acknowledge that last piece because it will be part of my experience, my life, whether for good or for ill. But this makes me no less intent to fight for life.

Tomorrow, I see the urologist. Perhaps he will say that the tests were wrong, that the CT Scan was unrevealing or misinterpreted, or the tumor benign.  Perhaps.  Perhaps, but perhaps not.

Also today, an apparently healthy Rhododendron tree at the front of our house was felled in the snowstorm. While neither of us are superstitious, Deena and I couldn’t avoid wondering if it wasn’t somehow inauspicious.

Tuesday, January 24, 2023

We saw the urologist today who, based on the CT images, determined that I indeed had cancer. What variety of cancer (e.g., urothelial, squamous cell, adenocarcinoma and so on) and how entangled and embedded it is in the various linings of the bladder remains to be seen. A chest x-ray suggested no presence of cancer in my lungs. The urologist also believes that I had this cancer for some time now, even though I only had one positive sign (bleeding.) He agrees that without a history of smoking cigarettes, the cancer was probably from Agent Orange exposure in Vietnam as are four other comorbidities that I have.

It is because of my other health issues and the risks they present that my urologist is admitting me to the University of Albany Medical Center for a biopsy and possible resection of the bladder, or removal of the bladder in it’s entirety as soon as I can get a surgical oncologist assigned and an OR suite becomes available. Chemotherapy will follow. Deena and I decided it is best for me to resign immediately and permanently from teaching, rather than pour through research papers late into the night ad infinitum. And why publish if everyone perishes in the long run anyway?! We may drive out to Amherst to celebrate my retirement by visiting Emily Dickinson’s house or perhaps have a picnic with Molly at Thoreau’s cabin at Walden. It will be her second visit there.

We have complete confidence in my doctor, our primary care physician and that is comforting enough for the moment. I still see the hand of God here, but to what end?

Last night I read Tennyson to Deena (Odysseus and The Lady of Shalott). The advice of this son of Ithaca is not “to rust unburnish’d” during your final days. In the words of Tennyson:

“Tho’ much is taken, much abides; and tho’ 

We are not now that strength which in old days 

Moved earth and heaven, that which we are, we are; 

One equal temper of heroic hearts, 

Made weak by time and fate, but strong in will 

To strive, to seek, to find, and not to yield.“

Wednesday, January 25, 2023

It’s 5:08 a.m. and I’ve been awake for three hours now. Lately, I’ve been feeling like I’m in a bubble. We have snow on the ground and more expected today. I get text messages, appointment reminders, thoughts of when to schedule Molly for a grooming appointment or when to get the oil changed in the VW, but a lot of what I experience lately is somehow muted, except for those occasions that Deena and I are together. She and I are really having some quality time lately (last night I read Dylan Thomas to her and promised to read Langston Hughes this evening.) But I have the perception that people and events are somehow moving at a faster pace than I am, and I’m becoming more of an observer than a participant. In my mind’s eye, I see people doing purposeful things, being goal driven, following a map where they want to be an hour from now or a year from now. Or five years hence. When I turned sixty-seven, and among colleagues much younger than me, I was asked what my five-year goal was and I replied facetiously “To have a pulse.” The people around me laughed. Now, it’s no longer as facetious as before. Doable (maybe), but no longer a laughing matter. Am I starting to feel sorry for myself?!

Back to perceptions. Maybe there is a better way of putting it. Imagine you’ve lived in the country all your life. Every day you hear birds chirping, squirrels chattering, leaves rustling in the wind, pleasant, pastoral sounds that define your reality and assure you that all is well. One day, very faintly, you are startled to hear a new sound, like a train whistle a long way off. An unwelcome intrusion. You know what it is, but you’ve never heard it personally before. You notice it intermittently once every few weeks, then every few days, then a few times a day, and it seems like the train is slowly but surely getting closer. It teases you. Sometimes it seems louder, sometime fainter as if it were moving away. That’s called the doppler effect, but how will knowing that make a difference fifty years from now?

Lately the whistle has become persistent, piercing, demanding. You extrapolate that before long, the noise from the train will overpower every other sound around you every minute of every day. The birds will scatter, dishes will rattle, the ground will shake, and it will be impossible to hear or be heard. That loud, piercing sound is cancer. It’s still a good distance away, but as I anticipate the sound, I become increasingly hypervigilant.

I’m feeling a bit stressed lately. I’m starting to rock back and forth absently now and again (something that Aspies do) and I feel like I have a bit of contact dermatitis on my palms and left side because they are starting to itch (another sign of stress.)

Still, I have blessings to count. In spite of having more health issues than the White House has missing documents, I feel pretty good. I’m not about to give up at the moment and I want to make meaningful, heart-felt contributions to those in my family and our friends. My daughter and grand-daughter will visit in the next two months, and I hope to go to Texas as soon as the prognosis is a bit clearer. And, we have grandchildren here as well. Deena’s sister and her husband have been really wonderful to us and I’ve received messages of encouragement and prayers from her sister and brother-in-law in Florida.

So, as Robert Frost once wrote:

“The woods are lovely, dark and deep,
But I have promises to keep,   
And miles to go before I sleep…”

Here’s a song you might enjoy.

(Added): This afternoon at almost exactly at 5:00 p.m., the urology clinic called. I’ve been assigned to a urologic oncologist who will operate on me in the OR on Monday at the nearby University Medical Center Hospital. I’ll speak to her by phone tomorrow, but for now, I expect at least a biopsy and at most a TURPT (trans urethral resection of bladder tumor), possibly a cystectomy (removal of the bladder) which is a little more involved. Tomorrow first thing, I get a C-19 test and bloodwork. Friday afternoon, I learn the time of surgery on Monday, speak to anesthesiology, and get some final information. One good point is that only six weeks ago, I was worked up and cleared for an unrelated general surgical procedure, so my clearance is still mostly valid.

Another good point is that Deena and I have excellent health insurance, probably more so than many Americans, and that makes me more than a little sad for their sake. It’s precisely because we have such good insurance, that we support whatever fair legislation our state or national government might pass to provide quality health care to those less fortunate than us. I’ve worked briefly many years ago in a private hospital and have seen people without health insurance turned away. Jesus healed the sick wherever he went, so we can assume that the Almighty would have us well. Why some of us suffer from ill health is a discussion for another day.

I am also thankful–and particularly humbled–at the interest and prayers of so many people. Not only are over a hundred friends and relatives praying for us, but entire congregations as well. Thank you all.

Thursday, January 26, 2023 (C-Day minus 4)

A lot has happened as the pace starts to pick up while the day of surgery approaches. I’ll try not to mix too many metaphors in this post, but . . .

I think a more relevant example of the situation is to use the simile of a hurricane. Those of you who live along the each coast are familiar with the flag ensign portrayed to the right. It is a warning to mariners and others that a hurricane is approaching, a storm where winds may exceed more than 74 mph. Most people are urged or orders to evacuate coastal or low-lying areas, and those who do not heed the warning do so at their own peril. I’ve included a photo of a hurricane from space to make several analogies.

You can see the spiral shape of the storm with the rain bands branching outward. As you get closer to the center of the storm (the eye), the rain, the surf and winds increase, though for that short period of time when you are in the eye of the storm, everything is calm. Then the winds resume, but from the opposite direction. Often tornados occur following the trailing edge of the hurricane. Deena and I are on the outer (leading) edge of the approaching storm. We know something troubling is coming, we’ve been warned by my doctors that we must take urgent action or we may be overwhelmed by events. People sometimes try to “hunker down” and ride the storm out, but that strategy does not work with cancer.

Having a date for surgery changes the scenario from a hypothetical or abstract exercise to a real life drama with consequences. As we get closer to Monday, we have fewer choices than before and no little time to choose. I had a COVID test and a blood draw this morning, and a video conference with the surgeon scheduled. However, the video conference did not go off as planned, so I e-mailed the surgeon instead.

Last night was pretty stressful. Deena and I discussed the possibility of me spending a few post discharge days in a skilled nursing facility if any extensive remodeling of my bladder and/or intestinal tract is necessary. This procedure isn’t transplant surgery, but there is always the potential for complications and recovery takes a little longer later in life.

Later that day . . .

We had some encouraging news this afternoon. The oncological surgeon called for a sort of “meet and greet” and we had a videoconference. Going solely by the CT images, the surgeon thinks that there is a good chance she can remove the tumor and yet, spare the bladder, barring some unforeseen circumstance. A lot depends on the stage that the cancerous tumor is in. According to the American Society of Clinical Oncology (ASCO), there are four stages of bladder cancer:

“Stage 0a: This is an early cancer that is only found on the surface of the inner lining of the bladder. Cancer cells are grouped together and can often be easily removed. The cancer has not invaded the muscle or connective tissue of the bladder wall. This type of bladder cancer is also called noninvasive papillary urothelial carcinoma (Ta, N0, M0).

Stage 0is: This stage of cancer, also known as a flat tumor or carcinoma in situ (CIS), is found only on the inner lining of the bladder. It has not grown in toward the hollow part of the bladder, and it has not spread to the thick layer of muscle or connective tissue of the bladder (Tis, N0, M0). This is always a high-grade cancer (see “Grades,” below) and is considered an aggressive disease because it can lead to muscle-invasive disease.

Stage I: The cancer has grown through the inner lining of the bladder and into the lamina propria. It has not spread to the thick layer of muscle in the bladder wall or to lymph nodes or other organs (T1, N0, M0).

Stage II: The cancer has spread into the thick muscle wall of the bladder. It is also called invasive cancer or muscle-invasive cancer. The tumor has not reached the fatty tissue surrounding the bladder and has not spread to the lymph nodes or other organs (T2, N0, M0).

Stage III: The cancer has spread throughout the muscle wall to the fatty layer of tissue surrounding the bladder (perivesical tissue) or to the prostate or the uterus and vagina. Or, the cancer has spread to the regional lymph nodes.

• Stage IIIA: The tumor has grown into the perivesical tissue or has spread to the prostate, uterus, or vagina, but has not spread to the lymph nodes or other organs (T3a, T3b, or T4a; N0; M0). Or, the cancer has spread to a single regional lymph node (T1 to T4a, N1, M0).
• Stage IIIB: The cancer has spread to 2 or more regional lymph nodes or to the common iliac lymph nodes (T1 to T4a, N2 or N3, M0).

Stage IV: The tumor has spread into the pelvic wall or abdominal wall, or the cancer has spread to lymph nodes outside of the pelvis or to other parts of the body.

• Stage IVA: The tumor has spread to the pelvic wall or the abdominal wall but not to other parts of the body (T4b, any N, M0). Or, the cancer has spread to lymph nodes located outside of the pelvis (any T, any N, M1a).
• Stage IVB: The cancer has spread other parts of the body (any T, any N, M1b).

https://www.cancer.net/cancer-types/bladder-cancer/stages-and-grades

If you refer to the illustration below, you’ll see that in situ cancer (which means “in the place the cells were originally formed”), is the tiny beginning of a tumor which only penetrates the urothelium layer, the name for the inner layer of the bladder. By the time the tumor has grown to Stage III, it has invaded the muscle layer as well of the bladder, which means it has become more problematic. By Stage IV, the tumor has grown beyond the outer bladder wall and is ready to spread (metastasize) directly to adjacent organs or indirectly elsewhere in the body through the lymphatic system.

Staging cancer is one thing. There is also the issue of grading, which classifies the cancer cells on the basis of how closely they resemble normal cells. Again from the ASCO:

“Many urologic surgeons classify a tumor’s grade based on the chance that the cancer will recur or grow and spread, called progression. They often plan treatment based on the grade, using the following categories:

• Low grade. This type of cancer may recur.
• High grade. This type of cancer is more likely to recur and grow.“

https://www.cancer.net/cancer-types/bladder-cancer/stages-and-grades

People with high grade cancer may have cystoscopies every six months for the rest of their lives to search for recurring cancer.

How will my surgeon approach the procedure on Monday?

She will attempt to biopsy the tumor while I am under general anesthesia, before cutting out the tumor plus a margin of healthy tissue just for safety’s sake, and cauterize the cavity to help prevent post-op bleeding (which, she says, can occur periodically up to two weeks post-op whenever a clot falls off.) Next, I’ll receive my first dose of chemotherapy infused via catheter directly into my bladder. I may or may not have to spend a night in the hospital depending on how well I tolerate the procedure and, of course, whether there is something unanticipated that arises during the procedure.

Tonight, we went out to unwind a bit on this hopeful news, and because of some promising treatment proposals from Dee’s doctors for health questions and concerns of her own.

I thank God I have someone special in my life to share these burdens with. It is my heartfelt prayer that anyone who reads this be similarly be blessed if not now, then in the future. Tomorrow we’ll pick up again about my journey with cancer.

Friday, January 27, 2023 (C-Day minus 3)

The hospital called today to tell me to report to surgery at noon on Monday. High Noon. I felt a bit of aching on the left side of my pelvis late this afternoon and evening. Some pressure close to where I understand the tumor to lie. Or, is this my imagination? If tumors could talk, what would it be saying to me? At this moment, I cannot wait to have this all behind me.

Errors in thinking

Earlier, I mentioned Type I and Type II errors.  These are terms commonly used in statistics.  Because they have common everyday applications, I’ll skip the technical definition.

I’ve noticed more and more people who are concerned about unfamiliar cars and people in their neighborhood.  Sometimes a car may park near a home for ten minutes, or someone rings their doorbell.  In other cases, a person appears to be taking photos of houses in their neighborhood.  This could be a person with some criminal intent of course, but it could also be a realtor researching “comps,” someone making a delivery, someone lost who is asking for directions, and so on.  Drawing a false conclusion that there is an imminent threat is a Type I error. In fact, there is no threat, just a simple, reasonable explanation for the behavior.

On the other hand, sometime we do not err on the side of caution and the consequences can be grave.  A person knocks on the door of the home of a senior couple and tells them their roof needs repair and the stranger can fix it cheaper than other roofers (for cash in advance.)  Or, the couple receives a phone call from someone who says he’s a sheriff in some distant county and who reports their grandson was in a serious accident. If they provide their credit card information, he can receive expedited medical treatment.

Examples of the two types of errors

Examples of Type I errors:

• A jury convicts a defendant they believe committed a crime when he, in fact, did not.
• A person thinks they have COVID or cancer when they really do not.

Examples of Type II errors:

• A jury acquits a defendant they believe is innocent of a crime when in fact he is guilty.
• A person refuses to believe that they have COVID or cancer when they really do have it.

If the jury convicts an innocent person, they may spend their life in prison or be wrongly executed.  If a jury finds a guilty person to be innocent, that person is released into the community and more harm may follow.

Why do people wait so long to seek help? Why did I?

I don’t know the answer to that. I was conscientious enough to mention the bleeding to my neurologist when I first noticed it, and she promptly and prudently urged me to see my family doctor. But then, inexplicably, inexcusably, I delayed doing so for almost one, two, three months. It wasn’t fear or denial that caused me to delay. In fact, the bleeding seemed to stop for a good six to eight weeks afterwards. Maybe whatever it was went away I must have wondered? My wife’s first response was to punish herself for not pushing me to report the problem. Then, she was rightfully angry that I didn’t take the initiative. What was I thinking?! It’s hard to be cavalier about it because I now realize that it was not just my life I was chancing, but her’s as well. I expect we’ll have a lot of issues to work through before “this” is all over.

If you ask your doctor to check a lump for cancer and it is harmless, you may feel foolish or ridiculed when you learn it is not cancer.

“Receiving a ‘no cancer’ diagnosis in the past tends to make people less likely to get new or reemerging symptoms evaluated, finds a new study from University of London College.” The article goes on to note: ‘You might put off an appointment because you have a false sense of security that your symptoms are still harmless—even if they’re new or worse,’ says study author Cristina Renzi, M.D.”

I did not believe I had cancer when the bleeding first started.  Perhaps one of my medicines or medical conditions affected my judgment, perhaps it took more than the usual time to process, but if you were to say to me that you were passing blood and what should you do, I would not hesitate to say to you “You should see a doctor.” Stat!

So, why do people take so long, or discount what they can plainly see with their own eyes?

There are many reasons that people delay reporting cancerous signs or symptoms to their primary care physician. According to the National Center for Biotechnology Information, women with cancer of the ovaries delay. One reason for delay is that “many symptoms of ovarian cancer are not well-recognized by women in the general population.”  This is true for other types of cancer as well.  The same study concludes “. . . that the most reported barriers to seeking timely medical help included being too busy to make an appointment, concern about what the doctor might find, and difficulty talking to the doctor.”

There are other reasons as well, such as denial. Chatelaine, a Canadian Womens magazine reports: “Ignoring symptoms of a disease with a high mortality rate is a surprisingly common phenomenon, says Dr. Kim Lavoie, co-director of the Montreal Behavioural Medicine Centre and a psychology professor at the University of Quebec at Montreal. ‘People will cognitively avoid things they don’t want to be real; it’s a natural defense mechanism,’ she says. Studies have shown the different ways it manifests – from using humor, to outright refusal to acknowledge that an illness might exist.” What’s more:

“Many people delay seeing their doctors, and won’t even tell their spouses,” Dr. Lavoie says. And when they finally make an appointment, they tend to minimize their symptoms. ‘Patients will lead the discussion in a certain way, so that the doctor will be more likely to reassure them,’ she says, which means that doctors often don’t get a true history and may make important decisions based on inaccurate information.”

https://www.chatelaine.com/health/denial-ignoring-symptoms/

Research abroad found that “46% of all cancers diagnosed in England in 2012 were not detected until they had reached stage three or four, according to its analysis of data collated by the NHS’s National Cancer Intelligence Network.

Women are particularly vulnerable

Reporting on cancers of the brain, the BBC noted “Women, as well as low-income patients, experienced longer delays. They were more likely than men to see 10 or more months pass between their first visit to a doctor and diagnosis –and to have made more than five visits to a doctor prior to diagnosis.”

According to the publication Nursing Standard: “A recent YouGov survey carried out for Breast Cancer Care found that 5% of women diagnosed had waited more than six months to report finding a symptom to their GP. Nearly a fifth of the 403 women surveyed had waited more than a month before seeing a GP – a figure that equates to 6,000 women a year in the UK.” Often, fear of pain, of disfigurement makes them reluctant to seek help.

Sometimes we attribute alternate, even plausible explanations for signs or symptoms of cancer. Blood in the urine can be chalked off as a urinary tract infection while blood in the stools “could be” hemorrhoids. Lumps in the breast might be from fibrocystic disease, and “If your breast exams and mammograms are normal, you do not need to worry about your symptoms. Fibrocystic breast changes do not increase your risk for breast cancer,” according to Mt Sinai hospital in New York City. Note that this reassurance requires regular breast self-examination and mammograms as well. Still, any new lump is worth bringing to the attention of your doctor just to be sure. I was wrongly reassured that when taking Levodopa, urine that was red was normal. Yet the color of my urine came from blood. So it’s always best to be safe. As I write, I am about 72 hours from knowing personally whether my cancer can be controlled, or if the tide of battle has turned against me because I tarried.

Some people ignore cancer signs because they don’t know just what the signs are. According to the American Cancer Society, these are the signs of cancer:

• Fatigue or extreme tiredness that doesn’t get better with rest.
• Weight loss or gain of 10 pounds or more for no known reason
• Eating problems such as not feeling hungry, trouble swallowing, belly pain, or nausea and vomiting
• Swelling or lumps anywhere in the body
• Thickening or lump in the breast or other part of the body
• Pain, especially new or with no known reason, that doesn’t go away or gets worse
• Skin changes such as a lump that bleeds or turns scaly, a new mole or a change in a mole, a sore that does not heal, or a yellowish color to the skin or eyes (jaundice).
• Cough or hoarseness that does not go away
• Unusual bleeding or bruising for no known reason
• Change in bowel habits, such as constipation or diarrhea, that doesn’t go away or a change in how your stools look
• Bladder changes such as pain when passing urine, blood in the urine or needing to pass urine more or less often
• Fever or nights sweats
• Headaches
• Vision or hearing problems
• Mouth changes such as sores, bleeding, pain, or numbness

Saturday, January 28, 2023 (C-Day minus 2): Bargaining with God

Elisabeth Kübler-Ross

For most of the last century, attitudes towards death and dying were shaped by Swiss born psychiatrist and author Elisabeth Kübler-Ross who developed the so-called Five Stages of Grief. Those stages are denial, anger, bargaining, depression and acceptance.  Essentially, what Kübler-Ross was saying is that more often than not, there a progression of thinking in people who are facing deadly diseases (such as cancer) or who are otherwise near the end of their life from other causes.  She believed that these attitudes and emotions affected patients in a very precise order, and that ideally the patient had to reach the acceptance phase before death if they were to die in peace.  This thinking still dominates the hospice movement in the U.S. as well as academia, nursing and medicine, probably because there is no other current and widely accepted paradigm to replace it.

I worked in the Air Force hospital system for a number of years before being selected to teach basic and advanced nursing principles at the service’s School of Health Care Sciences.  We taught Kübler-Ross to our students. It addresses fundamental human nature and it still seems to work. Granted, many people die instantly or within minutes of some trauma (or in their sleep) and don’t have time or the ability to understand, yet alone process what has happened to them. So like anything else in life, it’s not perfect.

Remembering a suffering patient

While working on a medical/surgical floor at a military hospital in South Carolina, we had a forty-five year-old woman admitted to our service with terminal breast cancer.  She had noticed a lump in her left breast (cancer is slightly more common in the left breast than the right) in June of that year.  She waited until July to contact her family doctor and had an appointment in early August.  Her doctor immediately referred her to a surgeon and she had an appointment with a surgeon around Labor Day.  But because of a family emergency, the surgeon left town and the consult (referral) was delayed for another two weeks.  When they had her in surgery in September, they realized that the cancer had spread and she was terminal.  She died a few months later.  I don’t recall if we kept her for those few months or if she was readmitted for her last week of life.  But the last twenty-four hours of life were tragic.  The poor woman suffered horribly, not so much from pain (we could have just given her more Demerol or morphine), but mostly from knowing she was about to die (and it was just before Christmas.)  It was so intense that the nurses and staff who cared for her were offered tranquilizers.

Why did this happen?

The Hospital Commander was a Christian and sort of a spiritual mentor to me (older, wiser, etc.) and we were sort of friends (as much as officers and enlisted can be in the military.)  I asked him privately why she suffered so much at the end.  He thought for a moment and then referred to the Five Stages of Grief.  In his mind, she had never processed the shock of her dying, of leaving her husband and children behind and this kept her from transitioning to anger, bargaining, depression and finally acceptance.  Everything happened so quickly that she could not belief it.  She was stuck in denial. “This can’t be happening to me!” And maybe there was a little anger present as well in her last day. May God have mercy on her soul.

I’m not dwelling, or even thinking, that I won’t be around a year from now.  My surgeon is hopeful that my cancer is confined to my bladder and that with resection, chemotherapy and follow-up, I can very possibly reach the five-year mark.  But she would admit that she can’t know that for a fact when the cancer isn’t even staged yet, and she has no pathology report on her desk.  If Elisabeth Kübler-Ross was correct about her stages of grief, then I’m past the denial phase.

Nor am I angry about all of this.  A year from now I will have reached my life expectancy.  I’ve had a quality life that the small children with cancer who we see on television will never know.  So, that would put me subconsciously in the bargaining stage (and by the way, the stages of grief do not compose a check-list where you tick off a line on a list.  This progression is mostly in the back of your mind and you are unaware of it until you behave as people characteristically do at each particular step.) Also, a “stage” can take anywhere from a day to months or years if one has that much time left.

Bargaining

When people bargain, they bargain with God, because doctors are mere mortals with no power over death and life.  Only God does. Afflicted and anxious people say things in the middle of the night when everyone is asleep like “God, if you spare me, I’ll go to church or synagogue,” or “I’ll give money to the poor.”  Or, “I won’t gossip anymore.”  In politics, that’s called a quid pro quo which means “You do this for me and I’ll do this for you.”  To computer programmers, that’s called a conditional (if/then/else) statement.  One part depends directly on the other.

At my age, and as a Christian, I have no inclination to haggle with God about what I might do or not do.  It’s sort of insulting to Him. This is partly because first of all, I probably would not be able to hold up my end of any “bargain,” and also because I feel secure enough in my relationship to God to understand that this is not how God prefers to work.  Think of when you were a teenager.  Would you have said to your father or mother “If you buy me a new sports car, then I’ll clean house for you for the rest of your life or my life? Else, I won’t”  Your parents gave you whatever you needed and occasionally what you wanted (often two different things) because they loved you, not because you were willing to do what you should have been doing all along.  As a child of God, I know He loves me and He is motivated by His love for His children.  He desires (God desires) our love in return. He doesn’t force us to love Him. He wants us to freely choose to love Him. Then again, everyone suffers in this life. Jesus says in Matthew 5:45: “He causes His sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous.”  In other words, we all face the same challenges in life.  The sun doesn’t shine on a Christian’s life while it rains on some other person who may not believe as I do.

There are things in my past that I’m sorry for and wish in hindsight that I could “do over.”  But I can’t.  After Monday, after the pathology comes back (around mid-February), I may be depressed, which is the next stage.  It may be a rainy day when my oncologist calls me with the news.  I’ll just have to face that hurtle when I get there. Stay tuned.

I received my pre-op CBC results. For the first time that I can remember, my differential was off. My Mean corpuscular volume (MCV) was high. MCV is “a measurement of the average size of red blood cells (RBC) in a sample of blood. RBC carry oxygen throughout the body to support the health and function of organs and tissues.” The simple interpretation is that I am mildly anemic from the bleeding tumor, but my Hemoglobin and Hematocrit was normal. One would think my Hemoglobin at least would be low, plus I don’t seem to be bleeding that much. There are some suggestions that there is a prognostic (i.e., predictive) relationship here, but it’s not clearly understood (at least by me.) Experience with my late wife’s different bouts of cancer (breast, kidney and thyroid) has shown me the usefulness of dealing with the here and now rather than what might or might not be downstream.

Deena shared a video (song) with me this morning by Hilliard Scott, called “Thy WIll.” I wanted to add it here because it has rich symbolism about a loss in the singer’s life, in this case, a child.

Here (below) is a table that approximates the five year survival rate by age and stage. Note that for each stage, the younger the patient is, the better their odds of survival. “Localized” means that the cancer in in the infected organ. The term “regional” means that the cancer has corrupted (compromised) the entire density of the wall of the organ. The term “distal” refers to cancer that has spread to a second organ some distance away, usually via the lymphatic system.

Sunday, January 29, 2023 (C-Day minus 1)

I’m now just a day away from my surgery. Barely six weeks ago before this cancerous cloud hovered over me, I was in another hospital’s OR getting a ventral hernia repaired under general anesthesia. Now, as then, my wife and I are impressed at how efficient and caring the health care support teams are across the disciplines. Surgeries are often planned months in advance as space is carefully budgeted, but in a sheer matter of days, the University of Albany’s Hospital staff has been able to find a spot in their schedule to fit in an old geezer like me. Then, there are the physicians, the surgeons, the nurses and anesthesiologists, the highly trained and efficient technicians and radiologists who work tirelessly day in and day out alongside the oncologists and physicists who provide indispensable services. Add to this the phlebotomists and physical therapists, administrators and the general office staff–they all deserve a “shout out” for their professionalism and commitment to their patients in specific and to patient care in general. Others who are sometimes overlooked are the mental health workers, pharmacists, scientists and researchers trying to provide vaccines for emerging viruses and threats and we have a industry we can all be proud of. And there are many specialties that I have not named.

While the pandemic has not been kind to many of us in many ways, the health care teams across the country have been stretched to the breaking point either by personnel shortages, lack of medicines and supplies, or threats and acts of physical violence from unruly patients or conspiracy theorists. These are misguided individuals who seek to undermine public confidence in today’s medicine and the selfless contributions of those Americans who deliver this care across the nation. Deena and I have family members who are part of this nationwide health care team, and we are particularly proud of their roles and contributions in these difficult days. When you see them on your next appointment, please be sure to thank them.

(Later in the day)

I’m relaxing today, reading, tending to some loose ends, not actually thinking much about tomorrow.  I took Molly for a long walk while Nurse Ratched gave my room (the Cuckoo’s Nest) a good cleaning.  I met a friend of ours in the neighborhood whose wife has Alzheimer’s and he asked how I was doing.  I mentioned the upcoming surgery and his response was that he thought I had surgery last month.  So, I explained the cancer issue to him and the discussion evolved into other people in the neighborhood who were dealing with cancer.

I did wonder again, though, how I could possibly have discounted the blood in my urine last October.  I thought about the temptation story in Genesis and how the serpent beguiled Eve with some poppycock causing her wits to fail her as far as right and wrong are concerned.  In a very abstract, non-literal way, I wondered whether the devil might not have similarly beguiled me months ago?  “Do you really think this smidgeon of blood is serious?”  “What are the odds that it could possibly be cancer?”  “Why not wait for just a month or two and see if it goes away?”  “Why get Deena stressed with another health problem and bother your doctor (again) with another issue?”

Then, I thought of the Roberta Flack song “Killing Me Softly.” How many of us have been beguiled (seduced) at some point in our lives?

“I heard he sang a good song, I heard he had a style
And so I came to see him, and listen for a while
And there he was, this young boy, stranger to my eyes

Strumming my pain with his fingers (one time, one time)
Singing my life with his words (two times, two times)
Killing me softly with his song
Killing me softly with his song
Telling my whole life with his words
Killing me softly with his song“

The moral of this story is that the devil knows just which buttons to push with us.  

Monday, January 30, 2023 (C Day): The journey begins

I had a night that was part restless, part deep REM sleep, with all sorts of unusual dreams, including one where I was driving a car and the brakes failed. We have a few more hours before leaving for the hospital. I’m not sure when I will be able to post again–hopefully a brief update within the next twenty-four hours.

Thank you to all of your best wishes and prayers.

It’s 8:00 p.m. Eastern Standard Time and I just got home from the hospital. I have a Foley catheter in for the next few days. You may be wondering what they found, so I’ll insert a spoiler alert here.  The surgeon told Deena that my tumor was larger and deeper than she had expected, and recommended a support group.  Deena said that the doctor’s affect was one of concern.  And, I’ll need another surgery in a few weeks, as soon as the pathology report comes in.  They elected not to attempt chemotherapy today after all.  No explanation was given, but perhaps it was because of the extensive “scraping” that needed to be done, and the insult (injury) to my bladder in general.

All day up to the surgery, I was tired and felt “flat” emotionally. I was either the last patient or the next to the last patient for the day when I arrived a short time before noon.  It was well after 1:00 p.m. when they called me back.  I had an all-woman team working on me (both surgeons, the anesthesiologist, and the OR nurse.)  They were great!  The anesthesiologist was particularly awesome with a practiced hand because I can’t even tell I had an endo-trach tube inserted.

The team had scrubbed up and arrived in the theater gloved and gowned before I was put to sleep.  When I awoke, I was in Recovery with a predictably low pulse ox around 88-89.  I say “predictably” because I have moderate COPD. Some deep breathing cleared that up.  No pain so far except for the catheter, but then again, maybe the anesthesia has not worn off completely.  I can’t wait to pull that Foley!

So, there was no quick fix today.  My life and Deena’s life have changed.  This reminds me of Hegel’s dialect, when the thesis and antithesis collide head-on.  The future (synthesis) is somehow different than before.  It may not be that good, but it does not necessarily need to be that bad.

Viktor Frankl

Austrian psychiatrist Viktor Frankl survived a German concentration camp.  He made an important discovery while at Auschwitz and that was “suffering ceases to be suffering when it finds meaning.”  This conclusion

“ . . . was based on Frankl’s observation that those people who survived the concentration camps during the Holocaust, were the ones who found the strongest will to live by finding meaning.”

I can’t say at this moment that I know the reason that I have cancer.  Certainly, my presumed exposure to Agent Orange while in Vietnam had much to do with it.  But I see God’s hand in the way Deena and I met, the circumstances under which we married, and built a new life together here in Upstate NY.  So, something good will happen. And I don’t even need to know what it will be, I only need the assurance that it will, and I have that already.

Tuesday, January 31, 2023 (C Day +1)

Not too bad a first night. If it weren’t for the catheter and a headache, I’d feel almost normal. No pain moving around the house. Waiting for Deena and I to wake up a bit more and then I’ll take a shower. Forcing fluids. The surgeon wants normal looking urine and this is what must be done. Best part of this is that the doctors say I can eat anything I want! Bacon? Yep! Pringles? You bet!!

A caveat. I know that thousands of people in this country struggle with cancer at any given moment. If it’s not the fear of what cancer does to their appearance, then it is their prognosis, or their abbreviated live expectancy. They suffer, and more so than we can imagine. My father’s worst fear in life was needing a colostomy at some point. Others cannot tolerate the treatment for their cancer without feeling even worse. And, I’ve known people who struggle financially with the cost of cancer care. I hope I’m not making light of there stuggles when I say something to break the tension. I also known that my journey has just started and who really knows what my attitude will be six months or six year later hence? So I hope I don’t ever seem patronizing. A deadly disease like cancer should humble us all.

Wednesday, February 1, 2023 (C Day +2)

It’s 1:42 a.m. and we just pulled the Foley catheter out. It was time. It was like an anchor. Plus, yesterday I was incontinent when I accidentally raised the catheter bag too high and the urine in the tube rushed back into my bladder. I was incontinent of urine for one of the few times in my life. The urine in the catheter bag was getting progressively less red, but I was still having some slight bleeding around the edge of the catheter from moving around.

The first task for today is to be able to urinate, something that we all take for granted (even welcome, if you live to be sixty!) I used to tell my colleagues on campus that during my career, I had all sorts of theories, policies, best practices and thoughts floating around in my mind, but after approaching 70, all that crossed my mind anymore is the urge to pee. Half of them laughed. The other half nodded their heads. They knew this for themselves and empathized. But in hindsight, I wonder whether even back then (circa 2017) the seeds of cancer hadn’t taken root, before I noticed any specific symptoms like hematuria?

The second task today is to book a follow-up visit with my oncologist. But when does she want to see me? She said the pathology will be back in “about” two weeks. So, do I try to get in to see her on Monday, February 13th? And what if she doesn’t have the report then? All sorts of routine decisions are taking on a greater import. Could that be depression? The difference now than before is that the “clock is ticking.”

The forecast for this week is for bitter cold across the country, with wind chill for this area as low as -40^o F (-40^o C.) late this week. But I’m only vaguely aware of it.

One of my life hacks is “the best defense is a good offense.” Reaching out to others, helping them with their trials won’t cure my cancer, but it will keep me from feeling helpless and despondent. My daughter and granddaughter will be visiting me from the Midwest in another month. I’m hoping to have some quality time with them, and watching them bond with our family up here.

Thursday, February 2, 2023 (C Day +3)

Feeling better this morning. Almost normal. The residual pain from the catheter and urethral irritation seems to be slowly resolving. But this is only a minor speed bump for what follows, I’m afraid. I’m in pretty good spirits all things considered. I’ve been working on some personal things, answering mail and messages from friends and so on. I’ve been moving around, forcing fluids and such. This past (first) night without a catheter I had to go to the bathroom every two hours. Rarely any blood anymore that I can see, but there is always the potential for microscopic hematuria (i.e. blood in the urine that you cannot see without a microscope.). Some other health issues seem to be floating around, including night sweats, a small problem with my recent CBC test and a remark on my x-ray from last week about “tram track” artifacts. I hope to get these checked in the next few weeks. Called my oncologist’s office for a follow up appointment yesterday, but was told that they would call me.

Thank God for a wonderful wife!

Thank God for a wonderful wife!

I walked around the block today with Deena and our golden retriever Mollie. Tomorrow I’ll drive the mile to our podiatrist. I still have a few cc’s of incontinence after voiding each time, plus some intermittent burning suggestive of a UTI. I’m hope to hear from my oncological surgeon soon. If I don’t hear from her tomorrow, I’ll leave her a message on the portal. Normally, I’d ask my primary care physician (PCP) for a script for antibiotics, but when you have cancer, your oncologist sort of trumps your PCP in those body systems where your cancer is active.

Friday, February 3, 2023 (C Day +4)

I’m becoming increasingly aware of people “around me” whom I’ve never met who have been diagnosed with cancer (one earlier this week.) I’m also becoming aware of a certain camaraderie among cancer sufferers, sort of the “communion of saints” in a different context. I wonder if there is some sort of role for me here? An Aspie who “meets and greets?”

I became aware of this bond around 2006 when my late wife had her first cancer surgery. She was likely getting her two week or four-week post-op eval, or just before or after radiation treatment via mammosite brachytherapy. We walked into a cancer clinic and took a seat a good distance from the four or five other people in the clinic waiting to be called. One man looked at us sympathetically and then walked over with his hand outstretched and a warm smile on his face. He introduced himself to us and asked if this was our first time here? I’m reminded of a “pick-up line” in a bar (“Come here often?” “What’s your sign?”) I felt very uncomfortable, sort of like a sinner in church. He was too familiar and imposing for my liking, and I tried to curtly explain to him that we were good–“nothing to see here.” Maybe I thought I could catch something from him? Or maybe, if I accepted his good intentions, I would be acquiescing to my late wife’s cancer stricken-state? We do strange, unpredictable things in shock. Like procrastinating filing a life insurance claim because you don’t want to admit to a stranger on the phone that your loved one is dead. Now I’m beginning to understand. People with cancer have a bond that people who are left-handed, or who read Marvel comics, or who watch “Seinfeld” reruns on television do not have.

Here is what the American Cancer Society has to say.

If I don’t hear from my oncologist today, I’ll send her a note via the patient portal. The path report is probably out for another week, but I’ll see if I can tease some new information from her that may have fallen through the cracks. I’m learning that not knowing this or that can be tormenting to some cancer patients. Like me?

8:30 a.m. My pathology just came back:

Surgical Pathology Report

FINAL DIAGNOSIS: A. URINARY BLADDER TUMOR, TRANSURETHRAL RESECTION:
High-grade papillary urothelial carcinoma, noninvasive.
Muscularis propria is not identified.

I attest that the above diagnosis is based upon my personal microscopic examination of the slide(s) and/or other materials, and that I have reviewed, approved, and electronically signed this report.

Original Report Attending Pathologist: XXXXXX

SPECIMEN: A: BLADDER, TUR, BLADDER TUMOR of Blocks: 2

CLINICAL HISTORY: Unspecified

PRE-OP DIAGNOSIS: Bladder CA

SURGICAL PROCEDURE: TURBT

GROSS DESCRIPTION: The specimen is labeled “bladder tumor”. Received in formalin is a 4.3 x 1.5 x 0.6 cm aggregate of irregular, focally cauterized, soft tan to pink/red tissues varying in size from 0.1 x 0.1 x 0.1 cm up to 1.0 x 0.5 x 0.3 cm. The tissues are entirely submitted in cassettes A1A2.

Grossed by: XXXXX

Assigned Resident: XXXXX

Patient: XXXXXX
Physician: XXXXX, MD
Location: SURG
Procedure Date: 1/30/2023
Receive Date: 1/30/2023
Accession Date: 1/30/2023
Report Date: 2/2/2023 17:19
All appropriate controls for special studies performed at Medical Center Hospital Pathology and Laboratory Medicine (MCH) were reviewed and accepted. Disclaimer: These special studies were developed and their performance characteristics determined by MCH. They have not been cleared or approved by the U.S. Food and Drug Administration (FDA). The FDA has determined that suchclearance or approval is not necessary.”

SATURDAY, FEBRUARY 4, 2023 (C DAY +5)

What a strange trip it’s been

It is so easy for people (and particularly patients) to become frustrated nowadays. There are signs on the walls of many medical outpatient office waiting rooms in the county reminding patients that if they decide to become abusive towards the staff, they will be asked to leave. It shouldn’t have to come to that. The health care industry has had an overwhelming, once-in-a-century crisis these past three years. As a contact tracer in the early days of the pandemic while assigned to the NYS Health Department, I read of people across the country trying to access ICU’s to take pictures of any empty beds that might support some cockamamy hypothesis that COVID was not as serious as the CDC reported. This also incidentally happened in the U.K. as well. COVID to these individuals was a giant hoax, unleashed by “Big Pharma” (i.e., those pharmaceutical companies that provide conspiracy folks with vitamins and Viagra.) Other doctors (and nurses) have been threatened with physical harm if they did–or did not–provide untested therapies to their patients. I’m a firm believer that you can attract more bees with honey rather than vinegar, so it pays to be nice to people (and your blood pressure will thank you.)

A visit from the three sisters

I’ve been close to death at least three times in life. My angel could probably name a few more occasions that I am not aware of. The Bible doesn’t support the idea of personal angels, but it does point out that one purpose of angels is to keep us out of trouble, and my angel has performed yeoman’s work for me when I was younger.

On one occasion in my early thirties while on active duty in the Air Force, I was having low grade sinus headaches for the better part of a year and took aspirin daily. After eight months, I saw a physician’s assistant about some unrelated issue, and he ran some bloodwork on me. Two days later he called me to mention that I’m anemic (and do I know why?) Salicylate (aspirin) poisoning never crossed my mind. A few weeks later, I developed flu-like symptoms and nearly passed out in the bathroom. I made it to the ER where I actually did pass out. I distinctly remember drifting between consciousness and unconscious, and of all things, I pictured or imagined Atropos of the “Three Fates” of Greek mythology standing over me. The Three Fates were named Clotho, Lachesis, and Atropos (from which we get the drug Atropine, a medication used to treat poisoning, nerve agents and heart disorders to mention just a few uses.) Those of you with children may have been given atropine while in labor. According to mythology (as none of this is Biblical) Clotho would weave the thread of life for each mortal in the womb before they were born. Lachesis determined how long the thread (hence, life) would be. Atropos ended the life of mortals by cutting the thread when it was time for them to pass over. I imagined I saw Atropos with her shears and the thread (my thread) perilously close to the blades before being revived.

The MOD (Medical Officer of the Day) in the ER said I had lost almost a third of my blood volume, and they started pumping blood into me as they transported me to ICU. I was scoped and almost prepped for surgery, but the staff was able to reconcile my self-reported history of meds I had been taking with the signs they were seeing. The aspirin, taken over a long time period, had “sloughed off” the inner lining of my stomach and caused a slow bleed which eventually expanded abruptly and caused the emergency.

So, I’ve come to appreciate life as much as possible, thankful for each day that God gives me. I also have a healthy respect of viruses and other disorders such as cancer. I try to stay sober about these threats. Confronting such life and death issues is not the time to lose your humility, but neither is it the time to be fearful.

While I’m waiting . . .

Today is a slow day cancer-wise. I’m closing out my academic files, paying some bills, working on taxes, etc. During slow times like this, I’d like to share some interesting tips or hacks or issues about cancer that occur to me or that I come across in my readings.

Understanding the Difference Between Cure and Remission

The first item is the very interesting question of whether a person’s cancer can be cured. When my late wife fought breast cancer and received radiation treatments, at some point her oncologist made a curious and paradoxical remark. I’ve struggled to recall exactly what she, said but I cannot remember it precisely. I understood it to mean that while my wife no longer had cancer, the cancer was likely still there. I assumed at the time, that you either had cancer or you did not. How could it be both ways?

The government’s National Cancer Institute website touches on this question and a careful read of this quote will be worthwhile:

Cure means that there are no traces of your cancer after treatment and the cancer will never come back.

Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared.

If you remain in complete remission for 5 years or more, some doctors may say that you are cured. Still, some cancer cells can remain in your body for many years after treatment. These cells may cause the cancer to come back one day. For cancers that return, most do so within the first 5 years after treatment. But, there is a chance that cancer will come back later. For this reason, doctors cannot say for sure that you are cured. The most they can say is that there are no signs of cancer at this time.

https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis

Using this guidance, and understanding that bladder cancer frequently returns, I assume that I will never be truly cured. Yet, with proper surveillance and prompt treatment, I also understand that I can survive the next five years and perhaps five years after that.

Fungal infections such as ringworm can be completely cured. So can sexually transmitted infections such as syphilis. The only way syphilis can reinfect a cured person is if her or she once again practices unsafe sex. Some diseases confer immunity against subsequent infections assuming the patient survives (cowpox and smallpox for example.) So, while there are complete cures for many diseases, there are some diseases that cannot always be completely cured at present (such as HIV) or cured in some patients (such as methicillin-resistant Staphylococcus aureus abbreviated as MRSA.) We have many thousands of COVID “long haulers” at the moment and we don’t know what the future holds for them. Up to ten percent of people with tuberculosis can find their TB reactivated years later if they sustain burns, or get pregnant.

So, many doctors do use the term “cured” when five years later, a patient has complete remission (i.e., has no signs nor symptoms of cancer.) Others hedge their bets and note in the patient’s record “no evidence of disease” (NED.). I think my late wife’s oncologist was one of those doctors.

Top ten types of recurring cancer

Type of Cancer	Likelihood of recurrence
Glioblastoma	Nearly 100%
Melanoma metastatic disease	87%
Ovarian	85%
Lymphoma, PTC	75%
Bladder	50% after cystectomy
Soft tissue sarcoma	50% after adjuvant chemotherapy Nearly 100% for advanced disease
Hodgkin lymphoma	As high as 50% after second line treatment
Prostate	48% high-risk disease
Pancreas	46% distant metastasis after adjuvant chemotherapy
Osteosarcoma	5%-45% metastasis

SUNDAY, FEBRUARY 5, 2023 (C DAY +6) CODA

Sunday is funday

Something that may make you smile.

We can help ourselves dealing with stress by balancing the demands in life, eating healthy, putting aside some quality time for yourself and getting a good nights sleep.

Deena and I have our own rooms. That’s the only way we can get any sleep at night.  Between my PTSD dreams where I’m believe I’m going through a mortar attack and my snoring where Deena thinks she is going through a mortar attack. . . well, it just works better that way.

As my hernia surgery approached, Deena began to identify with Nurse Ratched from the novel and movie One Flew Over the Cuckoo’s Nest.  According to plot summaries, Nurse Ratched attempts to scare her charges “from ever challenging her authority” which is unimpeachable at times like this.

So, I grudgingly complied.  I even got her a name plate for her door, which boosted her spirits (and authority) and we laughed and laughed.  After being diagnosed with cancer, I wondered “Why should Deena have all the fun” so I got a nametag for my door as well.  The Cuckoo’s Nest,” lest anyone be confused in our role-play exercise.

Some of you may be familiar with the publication Reader’s Digest which went out of business years ago.  One of their monthly features tucked between all sorts of interesting stories, book reviews and life hacks was a page called “Laughter is the Best Medicine.”  I think there is a reason for that.  Having a good sense of humor will not cure cancer, but it may help you live longer with an enhanced quality of life.

My Depends have arrived

So, I’m still a bit incontinent and my next surgery may make it worse.  I ordered some Depends from Amazon, trying to be as fashion conscious as an Aspie can be.  I chose charcoal grey which would go good with a tuxedo at the upcoming Grammys (if I had a tuxedo; if I had an invitation to the Grammys.) They fit great.  There’s nothing a guy likes better than underwear that fits right!

I remember the first time I needed disposable briefs. I was living out West, where cowboys eat briefs (and guys who wear them) for breakfast.  I put them on as I dressed for work.  My wife had just died, so I didn’t have anyone to ask to see if they could tell I was wearing Depends.  So, when I got to work, I asked the secretary “Can you tell that I’m wearing Depends today.”  She looked a bit quizzical and replied that she could not, but it didn’t sound convincing.  So, I did what any social scientist with Asperger’s Syndrome would do in a case like that.  I increased the sample size.  I asked my Dean, then the Department Chair, an English and a psychology professor and the housekeeping lady in my building.  By the time my first class started, I felt ready to march “once more into the breech” as Henry V might say as he razed yet another French city.

MONDAY, FEBRUARY 6, 2023 (C DAY +7) CODA

A week ago today I was only hours away from my first cancer surgery. Since then, I learned that our suspicions were true (it is, in fact, cancer inside me), and it seems to be operable, but at what cost to my bladder? Deena and I are guessing it’s at Stage One, or perhaps Stage Two. We know now that my cancer is the most common bladder cancer that people get, as likely as not caused by Agent Orange exposure in Vietnam, and is high grade (fast spreading.) It is also likely to come back in the future once I get this episode under control. Now, I’m looking ahead to a second surgery in the near future, which I would still elect to undergo even if the prognosis were not as encouraging. I’m trying to stay upbeat and besides, what’s the alternative?

I feel like (and I’m sure that Deena feels like) our lives have changed permanently somewhat and cannot return to the status quo ante. Metaphorically, cancer is like toothpaste. Once it’s out of the tube, how do you get it back in? You can only clean it up. And who wants to live with something deadly inside them? One of my old history buddies might say “You’ve crossed the Rubicon, Ron” but I’m not quite sure what Caesar has to do with it. Others would try to encourage us by saying “At least it’s only in your bladder and hasn’t spread.” That is a reason to give thanks, but it reminds me of cold, winter days when you head out the door to work and discover you have a flat tire. It doesn’t help to hear someone passing by remark “At least you only have one flat tire.” Especially if you don’t have a spare handy.

This morning I have a follow-up appointment with my neurologist who treats me for Parkinson’s Disease, also more likely than not from Agent Orange exposure because I don’t have the genes for PD. It was her warning that (belatedly) spurred to get my red-tinged urine checked. I wonder if she will treat me differently? Place me in a different category? But I may very well owe her my life.

1:00 p.m. The neuro appointment went fine. My neurologist thinks that the Levodopa is working and has relieved many of my Parkinson Disease symptoms. At Deena’s urging, I was able to schedule a telemedicine appointment with a doctor associated with my PCP. She agreed to order a urinalysis and a urine culture on me.

p.s. It’s now early evening and I still have not heard anything from my surgeon. I did receive an appointment to a trial jury for February 21 from the Commissioner of Jurors, so at least someone is trying to keep my mind distracted. Am I trying to get out of jury duty? Guilty as charged, if only that my next surgery is expected around then. Later in the evening my urinalysis came back. I’m spilling leukocytes and white blood cells in my urine, a good sign that there is a urinary track infection (or at least an inflammation.)

To continue reading about my journey with cancer, please click here

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