The very beginning of my cancer blog can be found here
OCTOBER 23, 2024 (M)
The pathology on my bladder washing (where normal saline or some other sterile solution is used to irrigate the bladder and then retrieve the solution which is sent to the lab for analysis came back this morning. It read:
“Final Diagnosis
“Bladder, washing:
Benign
Benign urothelial cells.
Note: ThinPrep examined.“
Without reading into this more than what is reasonable, I think this is the best cytology report I’ve had in a year. In the past, my random cells were identified as benign but abnormal or benign but reactive. This left the door open a crack for a future diagnosis of urothelial cancer. I can’t consider myself “cured” at the moment, Usually, a cancer patient has a burden of going for five years without a return of their cancer to be considered “cured,” and a year from now I will barely be at the half way point. And I’ve known some oncologists who don’t have the word “cured” in their vocabulary, even.
Cancer patients learn to live for the day, which is what I’m doing at the moment.
OCTOBER 9, 2024 (W)
Scheduled for a quarterly cystoscopy this afternoon. Hopefully there will be a good report. Back in a bit . . . Stay tuned.
My urologist-oncologist is very happy after the procedure. Bladder looks the best it has all year. God be praised!
“FINDINGS:
- The anterior urethra appeared normal.
- The prostatic urethra appeared moderate
- The ureteral orifices were normal.
- Bladder neck was normal
- The bladder appeared normal.
- There were no mucosal lesions suspicious for neoplasm. There was a scar on right bladder wall with minimal flat errythema
- There were Grade 2 trabeculations. Bladder diverticuli were noted at the dome
- There were no foreign bodies.
- Cytology:Yes
- Biopsy: No Location: not applicable
- Culture: No
- Cystoscope was removed and patient tolerated procedure well.
ASSESSMENT:
- High risk non-muscle invasive bladder cancer (Hg Ta>3cm)
- – Participating in clinical trial randomized to gem/doce
- – annual imaging due 7/2025
- – continue with q3 month cystoscopy
- -continue with two years maintenance”
September 25, 2024 (W)
So, I had chemotherapy today and it went well. I learned that I will receive chemotherapy monthly at least until next June (2025), which will make it twenty-eight months of chemo since my bladder tumor removal. Since I started chemo, I was part of a study that compared patients getting BCG to those getting chemotherapy (Gemdoce.) However, I understand in my region of upstate NY, BCG is no longer available, so I’m not sure what that means as far as the study is concerned. When I began post-TURBT treatment, I received each of the two drugs consecutively, and had them remain in my bladder for two hours each. A year ago, that time was reduced to one hour per application per medication. I’ve read of cancer centers in other parts of the country that have cut the BCG dose strength in half to deal with the shortage of BCG. Cancer patients such as I cannot help but wonder whether the efficacy of these changes might compromise care. Merck, the only producer of BCG in the U.S. and for other countries as well at the moment estimates that it’s new manufacturing facility won’t be online before 2026, so this is not a good time to have bladder cancer if you are pinning your hopes of recovery on BCG. Fortunately, Gemdoce is essentially as efficacious as BCG all things beging equal.
I’ve included the algorythm that many urologists use to decide how to plan a patient’s care after their TURBT and response to relapses, etc. This chart is provided by the AUA/SUO.
July 30, 2024 (Tuesday)
My cytology report is in:
“Benign. Reactive urothelial cells.“
This analysis is based on draining the bladder contents after the cystoscopy and analyzing a random sample of the free floating cells (including any that are suspicious in appearance I would hope.) The report is good (benign.) The next few years for someone with high grade bladder cancer is a bit fuzzy though. For example, what are “reactive urothelial cells?” According to the prestigious journal Nature,
Reactive urothelial cells show mild abnormalities that are shared by low-grade neoplastic cells and require considerable screening time from pathologists and cytologists. The presence of significant abnormalities warrants a diagnosis of atypias suspicious for malignancy.”
So, normal cells do not transition to cancer cells overnight. In the absence of cancer, there is a transition from benign to malignant caused over many generations of cells. The lifespan of a normal urothelial cell which lines the inside of the bladder is 40-41 weeks in length. On the other hand, if there are a few intact cancer cells lurking somewhere out of sight, all they need to do is reproduce, and that process is quite rapid. Reactive urothelian cells are abnormal cells. Mine do not presently meet the criteria to be called cancer. However, those cells of mine which were examined under a microscope show the sort of interim changes (mutations) that are seen in cancer cells. On the other hand, they may never transition into cancer. As Freud said, “Sometimes a cigar is just a cigar.”
Tomorrow I have a chemo treatment. Truth be told, I get weary somewhat with the process, although what I am experience is absolutely nothing compared to what many cancer patients go through. I’ve seen and treated many cancer patients and I fully understand that if cancer is my major health risk in this decade of my life, then God has blessed me with bladder cancer rather than the horror of breast, lung, brain, colon, pancreatic, bone or some other form of cancer.
Still waiting for the biopsy results. That usually takes a week or more, especially if there is a peer review or referee process involved.
July 26, 2024 (Friday)
I saw my urologist/oncologist on Wednesday for my quarterly cystoscopy. On these occasions, they insert a flexible catheter that has the utility and variation of a Swiss army knife. In other words, it can allow her to scope my bladder, biopsy my bladder, cauterize my bladder, flush it out with a saline solution and capture the residue. For all I know, it may provide her with the time, temperature and the weather forecast. Here is an extract from her notes:
FINDINGS:
The anterior urethra appeared: Normal.
The prostatic urethra appeared: Normal .
The median lobe was Present. Small.
The ureteral orifices were Normal.
Bladder neck was Normal.
The bladder appeared Abnormal
There were areas of erythema noted at the posterior bladder and right lateral wall. Area of erythema at posterior bladder was biopsied.Trabeculations noted: Yes
Diverticuli noted: Yes. Small. Noted near dome, explored with normal appearing mucosa.
There were no foreign bodies.
Cytology sent: Yes
Biopsy performed: Yes
Urine culture: No
Cystoscope was removed and patient tolerated procedure well.Assessment/Plan:
#High risk non-muscle invasive bladder cancer (Hg Ta>3cm)
– Cysto today much improved
The areas with erythema are areas that appear to be irritated of inflammed. While inflammation in other areas of a body (such as a swollen wrist or a person’s gums) can be painful, fortunately, I am not experiencing any discomfort. There are several causes of such red spots, though the most common cause is an inflammatory process, such as irritation to the urothelial layer of the bladder by my chemotherapy drugs which I receive once a month. However, “. . . the rate of diagnosis of CIS in a de novo red patch is 8%. . .,” so it is prudent to biopsy any red patches noted, and my urologist did. The findings of this biopsy and the analysis of my bladder fluid will provide the finishing brush strokes on the portrait on my bladder health at the moment.
Bladder trabeculations refer to areas of the bladder which are “thicker” than other areas. In places of the bladder where trabeculations are noted, there is a loss of elasticity of the bladder, which makes it difficult to empty one’s bladder normally. These trabeculations are something I am cognizant of, and I must “bear down” several times to empty my bladder after the urge to urinate passes.
DIverticuli refers to small pouches or cul de sacs in the wall of the bladder (or other organs of the body, most notably the colon which are the cause of diverticulosis. These pouches (whereever they are found in the body) are capable of producing irritation and can ofter become malignant. So, a good oncologist pays close attention to any diverticuli noted.
So, with the caveat that the cytology on the bladder fluid and the pathology on the biopsied tissue still remain to be analyzed, my bladder appears to be “much improved.” For this I am grateful.
June 26, 2024 (Wednesday)
Had my monthly chemotherapy today. It went really smoothly all around. I’ve been reading about more and more bladder cancer patients getting BCG, or the tuberculosis variant. Even giving them partial doses of BCG to make more bacteria available to other patients is giving the patients significant pain after the first 4-5 doses. BCG is different than chemotheraty because it actually produces an immune response, so your body may well develop flu-like symptoms.
For years, BCG was the gold standard for bladder cancer treatment, but there have since been chronic shortages. Here is a talking point paper I did a year ago:
411 on Bacille Calmette-Guérin (BCG)
TIME LINE
1920 Bacille Calmette-Guérin: First strain produced after 231 iterations combining bovine bile and Mycobacterium bovis (bovine TB) from a cow with tuberculous mastitis (p. 3).
1929 Biologist Raymond Pearl doing post-mortem studies at Johns Hopkins “reported a lower frequency of cancer in patients with tuberculosis.” (p. 3). “In other words, active tuberculous lesions occurred more than twice as frequently in the controls as in the malignant group. Healed tuberculous lesions occurred with equal frequency in both groups. In each decade of age and in each sex and race the percentage of persons showing active tuberculous lesions was higher in the control than in the cancer group”. Cancer and Tuberculosis, Raymond Pearl. American Journal of Hygiene, 1929 Vol.9 pp.97-159 ref.135.That was the first anecdotal link between cancer and TB.
1976 Following success in the use of BCG which was introduced via intravesical route into the bladders of guinea pigs with cancer of the urothelium, the first clinical trial of intravesical BCG was conducted. A. Morales, et al. were able to demonstrate a “remarkable decrease in the rates of recurrence of superficial bladder cancer in nine patients”. A randomized prospective trial by Lamm et al. in 1980 confirmed these earlier observations. Since this time, it has been shown that BCG, when used, has an inferred benefit to those with superficial bladder cancer in terms of decreased recurrence rate and increased time to recurrence. (p.3)
STRAINS
There are several different strains of BCG available, with the Tice strain, the RIVM strain and the Connaught strain being the most common (p.3). However, there seems to be no consensus on the relative efficacy of one strain vis-à-vis another.
MECHANISM OF ACTION
“The exact mechanism of action of intravesical BCG is not completely understood” (p.6). However, BMJ Postgraduate Medical Journal attached discusses several contending hypotheses (See attach.)
WHY IS THERE A BCG SHORTAGE?
“For a long time, there were 2 manufacturers of BCG; (one) in the United States and (one_ Canada. In 2012, Sanofi Pasteur in Canada, which manufactured the Connaught strain, went offline because of some inconsistencies in their manufacturing.”[1]
Two years later, Sanofi has the BCG Toronto laboratory cleared to make the drug. But now they have decided to end production, most likely because the profits of manufacturing the strain did not compensate for the costs of retooling of their plant.
Meanwhile, the Merck plant which manufactures the vaccine is having contamination problems of its own which require intermittent shutdowns for contamination of the product.
[1] https://www.urologytimes.com/view/the-bcg-shortage-what-s-being-done-and-what-you-can-do
May 31, 2024 (Friday)
Woke up around 4:10 a.m. I wanted to sleep some more, but I try to be a little tired for chemotherapy because it seems to take the “edge” off some of the more unpleasant aspects of the procedure. My treatment is at 10:45 this a.m. Once again, I thank God for sparing me from the sort of side effects that many cancer patients have with their therapy. I’ve been reading some of the accounts of other bladder cancer patients who have been receiving Bacillus Calmette-Guerin (BCG.) BCG is a variant of the bacteria Mycobacterium tuberculosis which causes tuberculosis, though in this case, bladder cancer patients do not actually get TB because the bacterial strain is either attenuated (weakened) or has been genetically modified in some way. About a century ago (1929), Biologist Raymond Pearl doing post-mortem studies at Johns Hopkins “reported a lower frequency of cancer in patients with tuberculosis” which seemed odd to him:
In other words, active tuberculous lesions occurred more than twice as frequently in the controls as in the malignant group. Healed tuberculous lesions occurred with equal frequency in both groups. In each decade of age and in each sex and race the percentage of persons showing active tuberculous lesions was higher in the control than in the cancer group”.
This suggested to Peal that the TB bacteria was able to “shut down” or impede the growth of cancer.
Therefore, BCG is not chemotherapy, but rather immunotherapy. The personal accounts I’m reading from patients receiving BCG therapy makes glad in some way that I was not selected to be in the BCG group of the study I’m in. All things being equal, it seems like the data is showing that in cases of nonmuscular invasive bladder cancer, certain chemotherapeutic drugs are as effective as BCG. Many–but not all–BCG patients are noting muscle soreness, low grade fevers, and generally feeling unwell for a day or two after treatment. This suggests an immune response to the bacteria and this indicates the treatment is working. Patients with a lack of flu-like symptoms may not be able to develop this response in their bodies and the bacteria in their cases may not be working as hoped against their cancer. But it would take procedures such as a cystoscope, perhaps a CT scan, etc. for a urologist/oncologist to make that determination.
I’ll be back later today after my treatment.
3:30 p.m. So, my treatment went very well today. In fact, it was probably the best one yet out eighteen treatments altogether in terms of a pain-free catherization. At the moment, I’m trying to flush out the second medication from my bladder. It is highly toxic, and the solution is highly flammable.
May 30, 2024 (Thursday)
I have a chemotherapy treatment tomorrow. I have a little apprehension every time an additional treatment approaches. There is nothing that can go wrong other than a urinary tract infection, but the employees at the urology clinic have generally good technique, and the nurse practitioner is a friend of Deena and me.
Tonight I have to take the first of four sodium bicarbonate (HCO3) tablets which shift my pH in anticipation of the treatment. I’m not sure if it is to reduce some unpleasant irritation from the chemotherapeutic agents or if the HCO3 potentiates the drugs.
I have been spending a bit of time on some of the social media forums that have bladder cancer subgroups. There are new people each week between the ages of 25-35 that report they have been diagnosed with bladder cancer. These are often people with young children who never thought anything like this might happen to them, especially at that age. So, I’ve been trying to encourage them the best I can. Other people are having really rough times with unrelenting bladder spasms or blowback from BCG. BCG is a weakened tuberculosis bacillus that evokes an immune response in the body of the patient. That usually accounts for their aches and pains. Others have their first bladder surgery and they don’t know what to expect or what questions they should ask of their doctor.
May 5, 2024 (Sunday)
Received a surprise today. A missing piece of the puzzle arrived on the patient portal. There were three biopsies done of different areas of my bladder plus a bladder washing which is always performed after a cystoscopy. The washing consists of scraps of organic debris, urothelial cells and perhaps malignant cells as well. The report finding said: “Bladder, washing: Benign. Inflammation and reactive urothelial cells.”
-More to follow-
May 1, 2024 (Wednesday)
My pathology from last Wednesday posted this afternoon with the conclusion: “Acute cystitis with mild atypia, favor reactive.” The term “acute” means “sudden” or “severe” in the context of health science. The term “cystitis” refers to an inflammation of the bladder. “Atypia” refers to something that is unusual, not normal. There are two categories in a sense here; Atypical favoring reactive (urothelial cells) and atypical favoring neoplasm. In my case, it was the former. And, as is typically the case, the pathologist’s conclusion was peer-reviewed.
What causes cystitis or inflammation of the bladder? Probably the most common cause is an infection. But in the absence of an infection, it can be drug-related and be caused by my chemotherapy for example. It can come from certain chemicals such as buddle bath solutions. It can be caused by radiation applied to the pelvic area. Cyctitis can also be caused by kidney stones or indwelling catheters. Finally, cystitis can be found alongside certain conditions such as diabetes or an enlarged prostate.
So, for now I’m doing good. I had chemotherapy today and in a few days Deena, her sister Debbie and I will be headed for a vacation in Maine.
Thanks be to God.
April 30 2024 (Tuesday)
A week since the biopsies and bladder wash was submitted to pathology and no word yet. No surprize at the processing time, but our imaginations have been working overtime and we’re prepared for a disappointing report. Erythemas (red, inflamed areas) of the urothelium or inner lining of the bladder as noted in my cystoscopies of Jaunary and of late April can be a common sign of CIS (carcinoma in situ.) In situ in the context of cancer refers to cancer cells what have not yet spread. The high grade classification of my cancer means that the proliferation of malignant cells into other structures of the bladder is just a matter of time. So, Deena and I are both feeling the stress. We see the possibility of another TURBT procedure in the near future at least, and a removal of the bladder, prostate and a portion of the illeum (distal small bowel) at worse. But we just don’t know until the cytology/pathology report arrives.
My urologist wrote that she wants my next chemotherapy treatment in late May, but someone scheduled me for chemo tomorrow. We’ll have to get that clarified when I report to the clinic in case my doctor does not want me to have chemotherapy for the time being. With a trip out-of-state planned for this coming weekend, we also wonder whether I’ll leave the clinic tomorrow with a bladder infection following treatment (assuming I receive treatment tomorrow.) This has only hapened once in over a dozen treatments, so the odds are fairly remote that it will happen again.
Definitely, more to follow.
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.