Thursday, August 21, 2014

Here’s the beginnings of the book I’ll (fortunately!) never publish

(Thinking that we might be on a long, tough road, and that I could share my experiences with other wives of prostate cancer patients, I began to write a book last month. That book will, fortunately, not need to be written after all. Not now, anyway! I am posting this here because I want to put information “out there” that might be of help to those who went through what we did last month. There is simply not enough information on the Internet regarding extremely high PSA scores that end up to NOT predict aggressive cancer!) 

Diary of a Prostate Cancer Wife

Month One: From Normal Life to Cancer Diagnosis
ER and Urgent Care
The Fourth of July has never been my favorite holiday. It’s too noisy and, with all those explosives, it’s just too fraught with the potential for harm. I’m always glad when the fifth arrives and my husband and kids are unharmed.
This year, when the fifth arrived my husband was not OK – and it had nothing to do with explosives.
Late in the afternoon of Friday, July 4th, Tom was finishing up some grouting work on the amazingly gorgeous backyard water feature that he’s been working on since last Fall. More an artist than a builder, he was carefully inlaying small, smooth black stones into the grout. Just as he was almost finished for the day, he noticed that he just plain didn’t feel well. He had been having a bit of trouble peeing that week, but it wasn’t more bothersome than simply taking notice. Now, though, he felt like he was suddenly coming down with the flu. His body ached in ways inconsistent with DIY projects.
We had planned to spend the holiday evening with our 30-year-old daughter and her boyfriend at their Seattle home with sweeping views of the entire Puget Sound. It would be the perfect place to watch fireworks and Tom wasn’t about to miss it. Before darkness even descended, though, Tom was spending more time in the bathroom than with us on the deck, and I could see in his face that he was feeling worse. When I suggested that we stop at the ER on the way home and he didn’t fight me I knew he was really sick.
It’s another bladder infection, we decided. Ten years ago, Tom had waited too long to get care when he had a mild urinary tract infection and it had become a full-blown bladder infection, just shy of a kidney infection. He didn’t want to re-live that, so there we were at the ER. An antibiotic (Cipro) and Pyridium (for the pain) were prescribed and we were sent home. Within a few hours, Tom would surely be feeling much better, just as he had ten years ago.
Except that he wasn’t feeling any better. The Pyridium didn’t touch the pain and he still felt like he had the flu. Now it was time for a Sunday morning visit to Urgent Care. Another urinalysis (they found nothing), another antibiotic (Suprax), a referral to a urologist, and we again waited for some sign of improvement.

On to a Urologist
By the time we saw the urologist the next Wednesday morning, Tom was feeling only slightly better. Dr. L, being a urologist, gloved up and (once I had left the room), gave Tom a quick digital rectal exam (DRE). When I stepped back in I immediately noticed a certain mildly stunned look on Tom’s face.
“There’s a nodule… a mass” someone said. (I still don’t remember if it was Tom or the doctor.) It was small, the doctor assured us, but “you must have a biopsy,” he insisted, “especially in light of your father.” Tom’s father had been diagnosed with prostate cancer when he was in his 70’s so Tom knew that the disease was in his family. Since he was in his 40’s, Tom has gotten regular PSA blood tests to screen for prostate cancer. His results had always been normal (under 4 ng/ml), even as recently as 18 months ago, when it had been a relatively comfortable 2.2 ng/nl.
The nodule was disconcerting, but Dr. L assured us that, although it could be cancer, it was more likely a benign calcium growth. He suggested that we focus first on getting rid of whatever was making Tom feel so sick. Dr. L insisted that the nodule and how Tom was feeling were two completely separate issues and that our immediate task was to wipe out whatever infection was causing Tom to feel so crappy. Besides, he insisted, he could not do a biopsy if there is any infection present because introducing bacteria into the prostate, and thus into the blood stream, could cause sepsis, “a far more serious concern than what your husband is dealing with now.”
To rule out a kidney stone, Dr. L sent Tom for a CT scan, which showed that there was no kidney stone. Good news. Or… wait. It’s not a kidney stone and there’s a “mass.” What the hell is going on?
I would just have to be patient, it seemed. It would not be the last time I’d hear this. Did Dr. L know that waiting is not my thing? That, being both German and a project manager, I need to act, to move forward, to connect the dots and get things done? Did Dr. L not know this? Apparently not. He told us to come back in one week and sent us home with yet another antibiotic (Bactrim), along with a pain killer (Uribel) that, unlike the Pyridium that turned Tom’s urine bright orange, would turn his urine bright blue. And, like Pyridium, the Uribel had no effect on Tom’s pain. (But we did joke that his urine was beginning to resemble a rainbow.)
During the next week, Tom finally began to feel much better. He could pee again without excruciating pain and his flu-like symptoms had disappeared. Had it not been for the nodule, we might not have felt the need to go back to the next appointment. But the word “mass” doesn’t sit well and we knew that we must, of course, follow through.
At our next appointment, Tom finally reported that he felt much better. Whatever was causing the flu-like symptoms and the painful urination had cleared up. Now we could focus on the mass and the dreaded but necessary biopsy. But first, a PSA test.

A Troublesome PSA
Once Tom’s blood was drawn for the PSA we left the doctor’s office and headed to lunch, where we waited for a call. I reminded him that he had been diligent in getting his PSA tests and that the last one, like the seven before it, was normal. Prostate cancer is extremely slow growing, I added, so there was no reason for more than a bit of concern.
After lunch, I headed home to work while Tom headed to the pharmacy to pick up the new prescription. He would call me if he heard from the doctor’s office about his PSA results. When Tom called me and mentioned that he had heard from the doctor himself, I was immediately concerned.
“So my PSA is 49,” Tom said. I was sure I misunderstood, especially since Tom didn’t sound all that concerned. My immediate thought was ‘it must be 4.9, not 49.’ “Are you sure?” I asked Tom. “That’s what he said. Forty-nine,” Tom replied.
As I hung up the phone I felt exactly as I had fourteen years ago when my father called me from the hospital where my mom was undergoing what we thought would be a routine procedure to explore her pelvic pain. “It’s cancer,” my father told me. “It was pretty extensive so they stapled her back up and she’ll be life-flighted to Portland (from Ashland, Oregon) tomorrow. Any chance you can fly down tonight?”
Four years later, Mom was dead from ovarian cancer.
Not again. NOT MY HUSBAND!
I immediately called Elisabeth, an ICU nurse – as if she could fix this. She shared my shock and off we both went into the land of panicked, subjective, terror-fueled research.
A retrospective word to the wise here: don’t head right to Dr. Google when you are initially terror-stricken and scared out of your mind. Instead, breathe first. Stop, breathe, and wait – even if just a few hours. The Internet is a miraculous place full of more information that we can absorb in many lifetimes, but it might not be the best place to turn to when you’re trying to process a PSA of 49 in the man you love.
The only one in the family who decided not to fanatically research our circumstances was Tom. Maybe it was avoidance, maybe it was denial, maybe it was even a form of self-preservation, but his attitude of “why would I scare myself before I even know exactly what I’m dealing with?” turned out to be the wisest approach.
During the next two weeks, I worked myself into a full-blown tizzy. Tom was remaining fairly calm (if intentionally uninformed) and I knew that he’d spiral into a severe depression if he was reading what I was reading on the internet (like, a PSA of over 10 usually means that the cancer is aggressive and has spread to other parts of the body, and life expectancy is less than five years) and if he knew how concerned family and friends, with whom we’d shared the news, were. So it became my role to shield him from all the negative emotions that our friends and family were feeling.

The Biopsy
Tom’s biopsy was scheduled for July 29th, three full weeks later than his first symptoms. He had requested general anesthesia for it. (As he told Dr. L., “If you don’t put me out, I’ll put myself out!”) He was a model patient, only mildly nervous, but fully resigned to the need for the procedure. Just fifteen minutes after I had taken a seat in the waiting room, Dr. L came out to tell me that all had gone well.
“Can you tell me anything new?” I begged. “Do you think it’s pretty bad?”
“I have learned not to even guess,” Dr. L replied. “We’ll know much more when we get the results back, but I have seen men in his situation who are just fine.” I didn’t dare to ask whether he meant just fine as in they didn’t have cancer or just fine as in they had cancer and survived.
After my short chat with the doctor, the nurse informed me that Tom would have blood in his urine, stools, and ejaculate for a few days to weeks.
‘Rainbow Man,’ I thought.
Once Tom was awake, dressed, and ready to head home, Dr. L talked to both of us, assuring us that everything would be fine. He is a happy and jovial man, always smiling, and it was beginning to piss me off. Really? Could he promise us that all would be fine, or is this his demeanor speaking?
We had an appointment set to meet with him in exactly one week, on Tuesday August 5th, to receive the lab results and find out whether Tom had cancer and, if so, how bad it was. Did we want to be called earlier if he received the results earlier? No, we decided, we wanted to hear it directly from him, in exactly one long, excruciating week.

The Long Wait and finally, a Diagnosis
We stayed busy that week, both in our careers and, on the weekend, in the yard. Tom worked on the backyard water feature like a crazy man, lifting heavy rocks (even when told not to), planting, and creating the most beautiful “bell tower” with three beautiful big bells that his parents had bought thirty years previous. I worked all weekend in the front yard, weeding out the crap and planting new, healthy flowers. As I hate gardening, I am convinced that I did this as a prayer, a call to the Universe, to be kind to us. If I weed out the old dead stuff, and plant healthy new stuff, will that translate to my husband?
Nothing gets me gardening like that. Hope must be a very powerful thing!
On the morning of August 5th, Tom went to work and I put in a morning of work at home. Tom’s plan was to meet me at the doctor’s office, but I begged him to come home first so we could drive there together. I was expecting to hear that Tom had aggressive prostate cancer that had grown outside the organ. This is, after all, what all my research was telling me about a man with a PSA of 49 with a palpable mass. Tom, on the other hand, was thinking that chances were pretty good that he had no cancer at all. But remember that he had also chosen not to do much research at all. This approach was a complete switch from our normal outlooks on life: I am normally the optimist and Tom is normally the… well, he calls himself a realist.
Dr. L was running late that day and the thirty minute wait seemed like hours. Neither of us talked much; there was little to say anymore. We would simply have to wait. Finally we were called to an examining room (not his office?) and waited briefly for Dr. L. He entered the room wearing his familiar, jovial smile and greeting us with a hearty “Hello!” My first thought was, ‘Not now. Don’t do this; it’s not fair!’
When Tom describes this moment, he jokes that the doctor happily exclaimed, “It’s good news! You have cancer!” This is actually not far from the truth.
“We did find cancer,” Dr. L told us. “But in only two of the 14 biopsy samples we took.” He went on to explain that he believed that the cancer was still fully contained, making it Stage 1 cancer of the prostate. “Not just treatable,” he added. “Most likely curable.”
Overwhelmed, I began to tear up – but with a smile on my face. This apparently confused Tom. Why would his wife be obviously relieved to hear that her husband had cancer? I think it was then that we both realized how different our approaches had been.

Month Two: Absorbing the News and Looking Ahead

In spite of what I regarded as relatively good news, Tom had just been told that he has cancer, and that can never be easy. He was very matter-of-fact, asking Dr. L what he thought should be our treatment plan. Dr. L replied that Tom is still young and the cancer is still contained, which makes surgery a good option. But first, he said, Tom would need to get another CT scan (this one with contrast), as well as a bone scan and a chest x-ray.
We then asked Dr. L about sex. Yes, we are still relatively young and this is still an important part of our marriage. Dr. L mentioned that, in young healthy patients, sexual functioning normally comes back within a year. During that year, the penis will need what he called “physical therapy,” – the enervating of the organ with blood at least once a day, keeping it accustomed to its healthy lifestyle. (No, we don’t have sex every day! Not after 40 years! But most men, he explained, have at least one erection a day, often in the morning as they are waking up.) That therapy would take the form of a penile pump.
OK, we have just entered the category of “old people who go to Denny’s to talk about their physical issues.” Not that we would talk to other people about using a penile pump – and certainly not at Denny’s. But something changed in that moment, and it was obvious to both of us.
As we sat at the restaurant (not Denny’s!) that day, reliving and discussing what we had just been told, Tom came to understand why I was so obviously relieved and I came to understand why he was so stunned. I still think Tom did the right thing by not researching his situation before we had a diagnosis. After all, the Stage 1/contained diagnosis was so far from what a PSA score of 49 would predict! But I also think it made the reality of the cancer diagnosis – even very treatable cancer – that much harder to hear.
Had Tom not had what turned out to most likely be a bad case of prostatitis, when would we have discovered the cancer? As Dr. L had proposed from the very first appointment, Tom’s cancer and the annoying and painful urination that brought us to a urologist in the first place are probably completely unrelated. So this is the meaning of a blessing in disguise!
NOW Tom could begin to research treatment options – and he assured me that he would. But he has a naturally avoidant personality when it comes to unpleasant things, and I’m not sure he’ll delve deeply into the issue, instead relying on the recommendations of the doctors we’ll see next, on August 20th, at Seattle Cancer Care Alliance. Again, relying on their expertise is a wise thing to do, but I want to make sure that we explore ALL possibilities – such as THC oil, which some studies have shown to shrink tumors (and to not cause a year or more of impotence). But this is his body, his cancer. I have to remember that when I want to push research articles and personal anecdotes in his face.
When we received the cancer diagnosis, Tom was still recovering from the biopsy. Even though he’d been warned that blood would appear in his urine for a few days and in his ejaculate for up to a few weeks after the biopsy, the reality was quite disconcerting for him. Men aren’t used to seeing blood coming from their penises and I don’t think any forewarning can really prepare them for it.

Tests to “R/O Mets” (Rule Out Metastases)
Two days after the diagnosis, as Tom was still coming to terms with any cancer diagnosis and I was still breathing from the relative good news of a stage 1 diagnosis, Tom had a second CT scan, this time with contrast. It was fast and easy (I envy Tom for his pipe-like veins; mine are all but invisible!) and we quickly got the results: no sign of any cancer in the pelvis. This is great news, since the pelvis is, for obviously reasons, the first place cancer would likely spread if it had reached beyond the prostate. Almost a week after diagnosis and more than a month after Tom initially got sick, he had a bone scan and a chest x-ray – which brings us up to date. Now we wait for the results of those tests. If they come back negative, we will breathe another big sigh of relief before we meet with Dr. E at the Seattle Cancer Care Alliance on August 20th.
…and after another week of waiting, the results of the bone scan and the chest x-ray are in: ALL CLEAR.

Perspective and Choices
Two weeks ago, when I was envisioning life without my husband, when dark and scary thoughts about him suffering great pain and dying in my arms clouded my thoughts and wouldn’t leave, I could have never imagined being here in this place of relative joy because it’s curable cancer. Two weeks ago, I roamed through my days envious of those who lived their lives free from any worry of cancer – just as I had done only a few weeks previously. How quickly one’s perspective on life can change!
But we are not home free. Tom still has cancer and it must still be dealt with. I am trying not to settle too deeply into the “stage 1, curable” diagnosis until after our visit with Seattle Cancer Care Alliance next week for a second opinion. And that PSA score of 49 still nags at me. Yes, there were good reasons why it might have been elevated. He most likely had prostatitis, which has been shown to elevate PSA scores. We had had sex that morning, which has also been shown to elevate PSA scores (within 48 hours of the blood draw). But 49? That is so incredibly high! I know that there’s not much point in having another PSA done since we now have the results from the actual cells taken at the biopsy, but I really want another PSA test, just to pacify my fears.

Finally Breathing – and no need for a book!
Our appointment yesterday with Dr. Ellis at Seattle Cancer Care Alliance confirmed that Tom’s cancer is very early stage 1. Only two of fourteen samples had any cancer at all and each of those cores had less than 7% cancer. It turns out that he is a prime candidate for “watchful waiting” and, if his PSA is down in three weeks (we have to wait until six weeks post-biopsy), he can even be part of a “watchful waiting” study, in which he will have PSA tests every three months and at least two more biopsies. They are looking for data on how long men can safely wait till they treat non-aggressive prostate cancer. Of course, if they find that it’s becoming more aggressive, he can treat it right away. But I like the fact that Tom will be closely watched and someone other than me will be reminding him to go to the doctor! And we both like the fact that Tom will be contributing to important prostate cancer research. We do, after all, have two sons whose father and both grandfathers had/have prostate cancer! So our motivations are also quite selfish.

When I first started writing this, I was documenting what I believed would be a long, hard, uphill battle with prostate cancer. I had no idea during my private panic all through July that, come mid-August, we would all be back to normal life, breathing and moving forward with only a blip in the road.
At this point, my goal is to put some search terms out there – the search terms that I used, to very little avail - to find out what the hell might be going on with my husband. Things like:

Q: Can an extremely high PSA score be caused by something other than cancer?
A: Yes! Tom’s score was 49 and, while he has stage 1 cancer, it is NOTHING like the answers I found, most of which said “Yes, but anything over 20 is probably aggressive cancer.” Bullshit, I say! Dr. Ellis told us yesterday that he’s seen PSAs over 100 being caused by prostatitis, BPH, etc.

Q: Is a palpable mass along with a very high PSA always aggressive cancer?
A: NO! See above.

Q: Can prostatitis or BPH cause cancer?
A: No. But it might get you to the doctor, where very early, curable cancer might be fortuitously diagnosed. See above.

Q: My husband has an extremely high PSA score and a palpable mass. Will I be planning his funeral in the next year? (OK, this is not a search query… but it IS what I was so fearing.)
A: Likely not. Breathe. See above.

So I’m done writing this “Diary of a Prostate Wife” – at least for the time being, and likely for many years to come. It won’t be a self-published Kindle book or its own blog, after all. But I do want to get it out there so others like us might be able to find some information other than the dire predictions we found when we did our research. If this helps even one family avoid the terror we felt for an entire month, it will be well worth it!

ADDENDUM: February, 2015:
Tom has had two more PSA tests and one more bopsy since I wrote the above post. His PSA in September, 2014 was 12.89. In December, 2014, it was 9.11. And last week it was 3.94 - within the normal range!  His biopsy last week shows one of 14 cores with 1 mm of cancer cells, with a Gleason score of 3+3=6 (the lowest Gleason possible). This is consistent with very early stage one prostate cancer. So Tom isn't going anywhere! 

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Margaret said...

So glad you don't have to continue this diary. I totally agree with you about Dr. Google; it is way too scary and upsetting to read statistics. No one is a statistic! My friend Eileen was right when she told me to let you know that the Gleason score was way more important than the PSA. (which many people are believing now is not a very accurate indicator of cancer anyway)Prostate cancer is probably THE most over treated cancer around, so I like the doctor's measured approach!!

Renate said...

I learned the hard way not to research health issues on the internet after my two bouts with Afib last year. I was scared out of my wits after my research. So when Hubby was diagnosed just before Thanksgiving last year with Melanoma, I stayed off the internet. We, too, ended up at Seattle Cancer Csre Alliance and he was operated on December 4. Yes, between the Afib and Melanoma and various other health issues we had a pretty bad year. We were lucky though that they got all the Cancer and Hubby will have to be monitored every three months for recurrence. Here is hoping for the best! BTW, he also had prostate cancer in 1999 and we chose to have the prostate removed.

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