April 27, 2024 (Saturday)

Waiting is the hardest part as any patient will tell you. Until you receive your cytology/pathology report, you are neither well or unwell absent any symptoms. As of today, there is no word. It will probably be midweek around May 1st before anything comes in.

I had a strange dream last night. I was working in a metropolitan area either in the Mayor’s office or the Emergency Services office and there was a nuclear even in the city. I’d don’t recall whether it was an accident or an attack from some foe. My surpervisor directed me to reconnoiter (i.e., scout) the damage and report back. I did, trying to avoid areas that I though might have dangerous radiation levels lest I become contaminated and poisoned by gamma particles as the unfortunate people of Hiroshoma or  Chernobyl were.

Was that just a random dream, or was my subconscious suggesting or warning me that at some point in the future my cancer treatments mught switch from chermical chemotherapy to radiotherapy?

April 24, 2024 (Wednesday)

I had a quarterly cystoscopy today, and it seems to be the most problematic of the four that I’ve had to date. I could not clearly see the monitor, but I did note half a dozen white pearl-like circles which seemed unusual. There were areas of inflammation which my urologist said were possibly from my chemo, even though it’s been six weeks since my last treatment. My doctor performed a tour de force sweep of my bladder while frowning. She navigated back to certain areas mentioning that she would perform a bladder washing and then threw in several biopsies as well. The biopsies weren’t bad, but the cauterization stung a mite. Things were pretty quiet up until that point with Deena and I and my physician, a resident and a nurse standing quietly in the room, but suddenly it seemed like a flash mob of other assistants appeared. I remarked to the doctor that I would have brought our golden retriever Molly along if I knew there was going to be a party. Now, for the waiting. . .

April 1, 2024 (Monday)

Today, my urological oncologist phoned me unexpectedly. Over then next twelve-to-fifteen minutes, she did a case review of sorts while Deena and I listened. Most of the several nodules on my lungs are only 2 mm in diameter. The largest nodule is 4 mm, which is slighly smaller than a standard pencil eraser. A nodule that is 2 mm is the size of the black dot below.

My doctor told us that at present, the nodules were too small for a PET Scan, and that even in bladder cancer patients, most pulmonary modules were benign. She also mentioned that we likely know otherwise healthy people who have similar nodules but who are not aware of them. She then spoke to the fact that a CT takes photos of small slices of the lungs, 2mm or less in “thickness” and that small nodules are not always apparent.

She also seemed to indicate that a repeat urinalysis was not necessary unless I had signs/symptoms of a urinary tract infection. As far as whether the 1+ blood was suggestive on cancer, she did not seem concerned unless I had visible bleeding.

March 29, 2024 (Friday)

Earlier this week, Deena took me to see a nurse practitioner at our practice as our PCP was booked. My complaint was an unusual, intermittent pain in my left clavicle (collarbone.) I had not injured the area and in the past I would have balked and chalked it off as just aging. It has bothered me on and off for the past month to six weeks, and I hoped the NP would have it x-rayed as cancer does metastasize to the collarbone, especially if it is in the neighborhood. Admittedly, this was a stretch, but as I mentioned to the NP, the odds of it being early metastasis were greater than zero, even if only two or three percent. And, with six Agent Orange diseases or disorders presumably from my year in Vietnam, what is one more? It could be an occult fracture from multiple myeloma, though there was no point tenderness around the bone, other evidense of myeloma and this thought did not occur to me at the time. Nor do I have any reason to suspect myeloma. The NP took an EKG which was a good precaution and it was read as normal, though the quality of the EKG was not the best I’ve seen. The x-ray of my collarbone was normal (thankfully.)

Today, I had chemotherapy with a new nurse. It went well, though because of a recent change in procedures, they had not intended to run a urinalysis before administering the chemotherapy drugs. Deena was persistently insistent that they do, and when the results popped up on my phone thirty minutes later, it noted that I had 1+ blood in my urine. Not the end of the world. It might have come from some minor capillary bleeding associated with placing the catheter, but if you compare getting catheterized and having a recent history of bladder cancer to a NASCAR race, it would be the equivalent of a yellow flag. It would not be prudent to ignore the test until blood was frankly visible to me. I won’t make that same mistake twice!

My experience from working in hospitals and personally being the advocate of a critically ill spouse who succumbed to her illnesses before I met Deena, tells me that you as the caregiver need to pay a vigilant role as the advocate for your spouse, parent, child or whomever is seriously ill in your family. You need to be assertive! On the other hand, you don’t want your care team to cringe whenever they receive a message from you. Yet, a (mercifully) few patients do fall through the cracks from time-to-time. They get ill from hospital-acquired infections or receive the wrong dose or wrong medication from the pharmcist. Many, many years ago, I almost administered a potentially lethal dose of digoxin to a cardiac patient because I overlooked the decimal point in the dose. Fortunately for the patient, the charge nurse was at the medicine station wondering who ran off with all of her dig.

A recptionist in training may fail to convey an urgent message to the physician. Sometimes, because of supply shortages, patients do not receive the drug of choice for their illness, or a pre-certification for an expensive procedure is not forthcoming from the insurance carrier. Wait times in emergency rooms which used to run three-to-four hours after triage are now sometimes four times that. Yesterday’s chemo treatment was changed three different times in as many days, as far as time or place goes. Hospitals and clinics are short staffed under ideal conditions, front line doctors and nurses are exhausted, and so on.

Quite a few doctors discourage their patients from researching their medical problems online. However, if you get your information from a credible source (e.g., the Mayo Clinic, Cleveland Clinic, Johns Hopkins, or the professional organizations such as the Bladder Cancer Advocacy Network, Altzheimer’s Foundation, etc.), I think you are better off for having done so.

As my chemo treatments go, it was one of the better ones. Hopefully, I’ll be able to get a repeat urinalysis this coming week to rule out a bleeding issue without having to pester my urologist yet again.

March 20, 2024 (Wednesday)

The last six weeks have been uneventful.  On February 18, I started Ozempic®.  My A1C (glucose) value has slowly crept up over the past year, but it was still pretty good for a Type II diabetic.  However, being a diabetic gave me medical drug coverageand a reason to access Ozempic, and I hope to lose forty pounds (it works like Wegovy®), which would might give me some advantage in any future surgeries or cardiac event.  I’m currently losing a tab over a pound a week, and I’m still on a low, introductory dose.

My end of February chemotherapy treatment went really well–both the catheterization and the immediate recovery.

And now, the news

That brings us up to this week.  In January 2023, I had a CT scan that noted the bladder cancer.  It also noted a small “nodule” near the base of my right lung.  The radiologist’s recommendation was for me to have another CT scan later last spring, and I did.  There was no change in the nodule by then.  My oncologist wanted me to have a brand, new CT work-up this past January on the first anniversary of my diagnosis, and she wanted the nodule to be revisited as well.  However, there was no order to scan my lungs in January, so she had to order another CT for my lungs (and she threw in my bladder again as well. I think that was perhaps because she wanted to see if there was any correlation to that “pink spot” I described below.)  Here is what they found:

There were no findings “suspicious for metastatic disease.”

The radiologist noted a “possible subtle asymmetry near the superior margin of the original bladder mass.”  To me, this suggests that something may be displacing the bladder wall, producing a barely noticeable bulge, but I have no idea if I’m correct..

“There was a “mild thickening/trabeculation of the wall . . .slightly more pronounced at the right superior bladder wall, positioned slightly above the original right bladder mass. Cystoscopic correlation/follow-up” was suggested.

The word “trabeculation” refers to a loss of elasticity.  The bladder is like a balloon, which stretches as it fills. Trabeculation occurs when there are obstructions to the outflow of urine from the bladder (e.g., kidney stones, enlarged prostates in men) trauma (and tumors.)

There was an innocent-appearing remark on the report under the category lung bases which read “Please see separately dictated chest CT exam.”  For a day and one half, there was not a second report, but late yesterday afternoon it popped up on the portal.

The second report began with good news: “There are no pathologically enlarged thoracic lymph nodes” and “there is no pulmonary mass, consolidation, or ground-glass attenuation.”  But then it went on: “Small solid, noncalcified pulmonary nodules measuring approximately 4 mm in the middle lobe lateral segment and 2-3 millimeters posteriorly in the left lower lobe are noted. . .” before concluding “above-described small lung nodules may very well be benign but are indeterminate as small metastases could demonstrate appearance in this patient with a reported history of bladder cancer. As such, these nodules should be reevaluated in 3 months follow-up CT scan of the chest.”

What might cause these tiny lesions.  The thickening of my bronchial walls noted elsewhere on the scan could be caused by infections, which could also scar the lungs in a way that the radiologist noted.  But bladder cancer that has spread to the lungs appears the exact same way.  So he seems to be saying “If this patient were a normal guy (and I can assure you that he isn’t), then these nodules would machts nichts (i.e., make no difference.)  But since he’s had bladder cancer, it might have spread (and now there is not just one nodule in one lung, but several in both lungs.)

In that case, how did those critters get loose?  And how did they get to the lungs? The lungs are a long way from the nether regions of the pelvis. My cancer seemed to be confined to the inner lining of the bladder, so there was little immediate concern that it might metastasize elsewhere. Usually, cancer spreads physically to an adjoining organ, or via the lymphatic system or the bloodstream.  But there was never any indication of swollen lymph nodes.  As far as the blood stream goes, who knows?

So, Deena and I expect that my oncologist will order a PET scan (Positron Emission Tomography.)  In a PET scan, radioactive glucose is injected in the patient’s body.  A cancer cell seems to have “sweet tooth” and the machine can trace where the glucose winds up, targeting specific areas.

So, how is this impacting Deena and I?

Deena and I have similar and different thoughts about this. We both hope for the best, but prepare for the worst. She has been widowed before and the last thing I want is to make her a widow for a second time. Nothing like this was on the radar when we first met six years ago.

Sometimes I think of this as a particular place in the road of life. Like, the Slough of Despond in Bunyan’s book “Pilgrim’s Progress.” Here, the protagonist must travel through a land from Point A to Point B (life to death) and the road passes through places such as “Vanity Fair,” or “The Doubting Castle.” Bunyan describes the Slough as:

. . . there ariseth in his soul many fears, and doubts, and discouraging apprehensions, which all of them get together, and settle in this place; and this is the reason of the badness of this ground.“

Or, there is a famous saying that life is a “vale of tears” through which we go. Based on Psalm 84:6, it testifies to the Pilgrim’s “fears and doubts,” as well as heartache, discouragement, and rejection, pain and despair. disease and death and so on. Our life might be a journey through some strange, distant land like Middle Earth (aka Endórë in elfish) where there are frigid, desert, marshy, rocky, wooded and other landscapes; where little seems familiar, but of one thing we can be certain–we are far, far from home.

Sometimes we must make parts of this journey alone. Fortunately, God has given me a faithful, loving partner who can help shoulder my burdens even as I do hers during this part in our lives.

February 7, 2024 (Wednesday)

Yesterday, I visited my doctor’s office and because things are so blurry right now, I don’t recall the primary reason other than to report dark grey/green urine. I was also concerned about stressing my liver. While there and on a hunch, they gave me a flu test and I tested positive for Type A flu. They also ran a CBC on me (my WBC’s had dropped back to normal which suggests the UTI is clearing up, and my glucose was high at 122, likely because of the flu.). As far as chemistry, my sodium was a bit below normal, but my potassium was still normal. I also received a script for Tamiflu, which usually works for me. For the last forty or fifty years, I’ve gotten my flu shots religiously. Later in the day, Deena was feeling ill with flu-like symptoms. She is on Tamiflu now.

Today, I saw the first proof that I was passing blood per rectum. There was bright red blood on the toilet tissue and in the bowl. We called the urological office to see if the chemotherapy might have caused it, They called back and said “No!” They said I should follow up with my PCP. About 9:30 p.m. tonight, I received a note that my pcp wants me to be evaluated tomorrow.

What could it be? I’m not overly alarmed because I don’t show any signs of bleeding in my lab work and my platelet count is normal, so whatever it might be is either new, or not spilling a lot of blood. The bright red color suggests a problem in the descending colon, sigmoid colon, rectum or anus. The bleeding is painless, so I can put aside and thoughts of external hemorrhoids, but I know I’ve had internal hemorrhoids in the past that can bleed. I’ve also on two occasions had a fistula and they can bleed, but I don’t think it is that.

The other possibilities are inflammatory bowel disease or cancer. I’m a year overdue on my colonoscopy and I’m on a five-year schedule.

February 5, 2024 (Monday)

Another difficult day. I could not start the Amoxicillin until Sunday morning after the pharmacy opened. I felt on the edge of nausea all day, nose running constantly and coughing up sputum. All I ate were three small fruit cups and one piece of toast. No sign of an URI, however. Nothing has changed this past week in my status as a cancer patient. It’s quite possible I have some future sequels of events. My mind was pretty friend and I derailed as far as my blog is concerned from moving forward.

January 17, 2024 (Wednesday)

Next week will be the first anniversary of my bladder cancer diagnosis. It marks the point where a urological oncologist schedules me for surgery in the coming days. At this point next Thursday, it will be the 347th day post-op from my second surgery (and not counting an emergency procedure to correct a complication a day after the second OR date.) I will also have had thirteen chemotherapy treatments by then, three cystoscopies, two CT scans of the bladder, and about thirty-two cheeseburgers.

The cystoscopy I had in June showed a bladder resembling the basement of the Palais Garnier – Opéra where Eric the Phantom lived. There were long mysterious drapes of dark eschar or devitalized (i.e. dead) tissue that swayed like sea grass in the tide. My doctor told me that it was a bit surprising to see so much at that late date, but it was normal. The OR sites from which the cancer was removed appeared normal. as well. At the end of the procedure, she removed a few milliliters of fluid, or bladder washing as it is called, for a cytology specimen. The lab looked at it and concluded “Benign. Reactive urothelial cells.” The best possible news.

Last October I had another cystoscopy. The eschar by then was gone. The bladder looked clean and bright and there was a spiderweb of reddish-colored blood vessels resembling a metropolitan transit map visible through the urothelial lining of the bladder. Cytology showed abnormal, but benign cells.

Last week I had my third cystoscopy. This time there was a noticeable feature not observed before. The bladder walls were once again ivory colored and bright. The blood vessels visible again, but there was an elliptical shape, perhaps an inch or so at it’s widest points. It looked entirely symmetrical and the margins of the artifact were clear and sharply defined. The color of the ellipse was a flat pink, uniform across the entire lesion. It looked mildly inflamed to me. After examining at the whole bladder, the opening of the ureters, trigone and OR sites, my doctor said aloud “Looks like a happy bladder.” Then, a pregnant pause. I could almost hear her thoughts in the thundering silence that followed, and I prompted her by asking about the ellipse. She nodded. She was training a resident who was performing the procedure and she asked him to pass over it again. She didn’t take a photo of it as far as I know and suggested it might be an inflamed area of tissue because she said that the chemotherapy catheter usually lies in that area during chemo treatments and it is possible it was caused by my last (December) treatment. But, she didn’t seem convinced of that to me, nor did she seem unduly alarmed. Instead, she said she’ll make a point of checking the area again in April when I have my next exam. After a second visit to my prostate, the catheter was removed. A few days later, the cytology came back with the following comments:

Urothelial cells arranged in groups, in a voided urine may be an abnormal finding which can be seen in inflammatory conditions, in association with calculi and in urothelial neoplasms. Cytologic evidence of a high-grade urothelial neoplasm is not demonstrated. Clinical correlation is recommended.”

My CT from earlier this month noted “Resolution of previously noted right-sided bladder mass.” That’s good news. Computerized axial tomography is usually very definitive. However, that artifact on my bladder might be two dimensional only, in which case it “might” have escaped detection. Five percent or so of bladder cancers do escape CT detection. My cancer is high-grade, which means there is a good chance of recurrence at some point, but then again, it might not occur. But I won’t be Erwin Schrödinger’s cat this time around.

I feel okay. I’ve made a mental note to examine my urine closely for an sign of bleeding in the day, weeks and months ahead. Other than that, life for Deena and I will go on. We do and plan to thank God for every day we have together. As the poet laureate and Pulitzer Prize winner Robert Frost wrote in his poem Stopping by Woods on a Snowy Evening:

The woods are lovely, dark and deep,   

But I have promises to keep,   

And miles to go before I sleep,   

And miles to go before I sleep.“

I thank God that if I had to have cancer, that it was bladder cancer and not pancreatic cancer, lung or brain cancer, and so on. My chemotherapy treatments are more of a nuisance than a hardship. And I’ve learned that being reminded of your mortality can make you more appreciative of the life you still have. Deena and I do not presume we have tomorrow because tomorrow is not promised to either of us. But we do have today and we have things to look forward to. Thanks for supporting us with your thoughts and prayers.