Judgment Day #8 - ALL CLEAR AGAIN! - March 3, 2011

JUDGMENT DAY arrived with a bang - literally! The bright early morning became suddenly dark at 7:30AM when a very severe storm cell hovered over our house and we were circled about with lightning and thunder for about 15 minutes - most unusual for this time of year. The streets (clean the night before) were covered with snow and ice, but warmer temperatures cleared it up before we headed down the mountain to the doctor's office. Still dark clouds lingered around the mountains and out in the salt flats, heightening my natural sense of impending doom. Most of my friends and co-workers do not understand my attitude. Having been cancer-free for over two years, they all say, "You will be fine." And of course I will be, whether or not the cancer returns.

But perhaps I should explain why I do not choose to be overly optimistic prior to judgment days. There are two primary reasons, one statistical and one psychological.

1) The statistical probability of recurrence of bladder cancer within 10 years is very high - over 80-85%. This terrible mathematical fact is offset by the happy circumstance that I have gone two years without recurrence, meaning that a recurrence will most likely not be life-threatening or particularly difficult to deal with - perhaps just another TURBT surgery and continued BCG treatments. Another offsetting factor is that there is about a 50% success rate with BCG treatments, so the chance of discovering cancer at each cystoscopy event is really 40-43%. Perhaps less, as there are no statistical data to support the benefits (or non-benefits) from FOCC, dietary changes, exercise, PectaSol-C, vitamins, or supplements. Roughly speaking, it's slightly better than a flip of a coin each time I go in for an exam whether or not cancer will be detected. Bladder Cancer is not a disease where one says "they got it all" and you go on with your life having been cured. It is a constant threat, monitored by annual cystoscopies FOR LIFE. That said, I am delighted to have Bladder Cancer rather than something more aggressive and/or isolated.

2) If one convinces oneself that all will be OK and the outcome is negative, it can be a crushing blow. I would much rather be realistic about probable outcomes and be psychologically ready to deal with them all. Thereby a positive, healthy, and beneficial attitude may be maintained throughout the process. That said, you really don't want to be around me much the week before an exam!

Back to our story - earlier in the week (on Monday) I called the doctor's office to inquire why they had not scheduled me for a CT scan yet. The young lady in charge quickly verified (through their new online chart system) that I was indeed due for it, and promised to make it happen quickly. After the usual bungling incompetence (that seems to afflict ALL medical staff) I ended up with an appointment at 10:30 on Tuesday, creating a conflict with the only work meeting I had for the day. Oh well. I arrived at the imaging office, chosen as a cost-saving alternative to the hospital, a few minutes early, where my paperwork was taken and processed. I was shown to a dressing area to change into some very comfortable surgical scrubs - another great improvement over the hospital and its gowns. On a hunch, I asked the technician to verify the exact X-ray screens I was to receive. This set off a multi-way conversation between the radiologist and members of the imaging lab staff with members of the doctor's office staff, and it ended up with Dr. Hopkins being called to the phone personally to discuss the matter. Apparently technology is changing and improving, and the imaging experts convinced the doctor to choose a slightly different diagnostic set that meant less X-rays for me - a good thing. Unfortunately the smaller set still needed intravenous (IV) iodine contrast and its associated risks and nasty, metallic aftertaste (even though I did not drink it)! This discussion caused some delay, but the X-ray machine was quickly set to spin mode and I was on my way with both films and CD in hand in short order.

Part of the pre-CT instructions were to fast at least 4 hours beforehand and not to have any liquids for 1 hour prior. So I found myself hungry and thirsty afterward, still tasting metal at the back of my throat. Heading north back to work I passed through Salt Lake City. I decided to head to a deli for a sandwich, but recalling the difficult parking, crowds, and standing in line required, I opted to swing by Frida Bistro to see if they were open for lunch. Good call - as they were open, not busy, and eager to provide outstanding gourmet fare at a reasonable price in a timely fashion. It was so good that I resolved to return this weekend with my wife for a celebratory dinner.

Thursday's exam was scheduled late in the afternoon - not my first choice, as it makes for half a day of getting ready. I quit work early yesterday, went to bed early and exhausted, and arose still feeling tired. Spent the morning doing routine chores, reading and answering emails, and practicing my deep breathing for relaxation. All went well and time flew by quickly. Uncharacteristically I went with a full breakfast, but by 1PM I was starting to feel nauseous and chose to skip lunch. More deep breathing overcame the nausea, and I gathered my paperwork and thoughts and climbed into the passenger seat for the drive down the mountain and into Salt Lake City. I read the comic page from several weeks worth of newspapers as we made the 50 minute drive in silence.

The doctor's office was jammed with a line to check in. There are four urologists and two physician's assistants in the practice, and it was my good providence that Dr. Hopkins was the only one not running behind schedule late in the afternoon. We were processed in and shown to an exam room within minutes. After the obligatory urine sample delivery and another 5 minute wait we were taken to the procedure room. Relieved to see the monitor sitting beside the scope, we looked forward to witnessing the procedure. After less than 10 minutes (a new record) Dr. Hopkins came in, shook hands, and reviewed my case: "Your X-rays look great. Some scarring on one kidney, probably from an earlier infection - no problem there. Diagnosed in 2008, clear for 2 years, six months between cystoscopies, 12 months between BCGs. So no BCG this time, but we will do it in September. PSA last checked last September?" I corrected him that it was January, 2010. " want those done annually, so go get it again," was his response. Thirty seconds later he began the exam and an interminable 60 seconds more later he was complete. "All clear - no cancer." And with a promise that we could schedule both cysto and BCGs in September he was gone.

It's hard to explain how one feels after these exams and news. I envision myself doing a fist pump, making an exclamation, offering a prayer of thanks. In reality it is an anticlimax. I told my wife it feels like just after exercise. Tired, not exhilarated, a load lifted. I just wanted to relax, alone, in a dark room for a while. But practical matters preclude that. For one, your junk HURTS a bit, and there is a mess to clean up, clothing to wear, saline solution to be discharged into the toilet, a prophylactic antibiotic pill to take, and future appointments to schedule. Then there is an hour drive home, during which I became ravenously hungry. This problem now had a simple solution in the form of a new, convenient location of the In-N-Out Burger chain. The buns are not on the diet, but an order "protein style" gets you delicious burgers delivered in a lettuce wrap. No fries, sugary soft drinks, or shakes for us. It was a pleasant respite.

Sun broke out before we got home, lightening the landscape and my mood. Reality had begun to sink in. 33 months cancer free! 6 months of freedom from medical intervention. It will be a good summer indeed! In the meantime we have the joy of enthusiasm mildly offset by the fiery pain of urination for a day or so...

I started sending out emails to various parties when I arrived home, and I learned that Brian S. in Atlanta had a rough time. Too much pain, swelling, and bleeding to do his cystoscopy. They will give him drugs to try to repair his bladder and try again in a month, while he is left to wonder if the cancer has come back or not. Next up we have HK in Toronto with a cysto on April 12, and David F. in England around the same timeframe. Prayers and support are always appreciated for all and by all. I received contacts from all over the world with prayers and good wishes for today. I thank you all for your support!


Joe Hendricks said...

Really glad it went so well!
As I read your blogs, I am having a lot of burning & urgency from yesterday's 6 out of 7 BCG doses. It helps to hear others' experiences with all this.
I'm also using breathing techniques to calm down and finding a lengthy learning curve there. I've listed your blog link on mine and hope others find it that way, finding encouragement as I do reading about your journey..

A Dived Ref said...

Congratulations Steve, I echo your sentiments and one day perhaps a quick fist pump and a yell after a "clear" will be in order :-)

You have the whole summer now to celebrate and I hope that your smile is gradually returning to your face.

Keep up the good work.

Ron McWold said...

I like the detail in your posts. I, too, have been BC free for two years and am on a 4 month cysto/BCG schedule.

I am aware of the recurrance rate, but at age 72, if I can glean another 10 years of BC free, I will be quite satisfied.

Ron McWold

Randi said...

Congratulations Steve!! It really gives us hope too. My husband has his first "Judgment day" March 30. after 6 BCG doses. Your blog has really helped us every step of the way. I printed it out from your first entry and give it to my hubby to read as we go along in our own journey. I cannot express enough how grateful we are for your detailed reports and your sense of humor. You really have a gift..God bless you with continued "all clear" reports and thank you again for what you do for all of us.

Steve Kelley said...

Thanks to you all for your kind words, good thoughts, and prayers!

For a truly amazing story, check out Joe and Heidi's blog: When You Both Have Cancer

Truly inspirational stuff!

Ronnie said...

First congratulations! You are an inspiration!! I often think about writing …then pull back my emotions and continue to read further. As a woman with Bladder Cancer I am respectfully aware of the additional pain and discomfort you gentlemen endure. My path started June 22nd 2009 with an early diagnosis and two small tumors removed. I then started BCG treatments each week for six weeks, then cystoscopes every 3 months.
My reports were clear for nine months… two rounds of BCG complete, then on April 8, 2010 another tumor. Dr. Rosen (my urologist) was surprised, and taken back. BCG had not worked. We decided to do no treatments but have cystoscopes every three months.
The good news is I am all clear so far. This Friday I will have another cystoscope, I am keeping a positive attitude, as you say “attitude is the most important thing”. I am all over it!
A little Bio: I live in Boulder, Colorado
I have never ever smoked
I am in good/great physical shape
I eat well (and introduced more organics)
I was a BIG diet Coke drinker
Thank you for all of your good work for all of us

Joe Hendricks said...

Thanks Steve for the kind words about our blog. As I type this, we are at a getaway 2-nighter on the coast; we left after Heidi's chemo this morning & my last(#7) BCG was put in yesterday, YAY!

I've never met you but consider you & your blogmates dear & inspiring friends. The journey's easier together, isn't it?!

Blessings, Joe

Ronnie said...

All clear...11 months and counting. We will continue with no treatment just cystoscopes moving to six month intervals.
I agree with Joe, "the journey is easier together"!

Joe Hendricks said...

I get my followup cystoscopy April 12, after 2nd TURBT(January) and first BCG round(February-March).

I still have burning 2 weeks after my last BCG dose - I notice some of you also had prolonged side effects after BCG finished? Mainly burning and urgency..

Sue said...

Hi Steve, so glad to hear that the cysto and CT were clear.
I like the way you talk about the feelings we get prior to these tests. People don't understand that it does loom over us..almost always, but especially around those times.
I've been dealing with bladder cancer for 6 years now, 5 tumors, 4 rounds of BCG and recently a clear cysto. That made the Christmas holiday more enjoyable.
Glad I stumbled upon this blog and have shared the link on Facebook.
Wish you the best with your journey and a very happy new year.