First of all, let me say it’s a thrill to still be here and able to write and share this update.
I last wrote an update five years ago, finishing with “I hope to write again soon.”
My Waldenstrom’s lives up to its reputation – a lazy, slow growing cancer. If you’re having to take the cancer journey, would you rather it be slow and lazy or quick and dirty? I think we all know the answer to that.
Still do regular bloodwork, without much change, except during Covid. Is it just me, or did we seem to simply lose time here? It’s like we took a long nap, and had a national nightmare, and woke up in a world of gloves and masks, and an uncertainty about the future. It tested our resolve as Wallies because we’re normally aware of our surroundings, and their subsequent risks. We tend to be careful normally.
Making my annual trip to Boston from Pennsylvania became not only a logistical nightmare, but a impractical one as well. There’s nothing like a five-hour ride on AMTRAK fully masked, worrying about the person in the next row not wearing theirs properly or whether or not the restroom was well cleaned between runs. Every sneeze and cough was treated as hostile “fire.”
Even traveling the “T” (mass transit system in Boston) proved a challenge for much the same reasons. Every other passenger seemed to present a clear and present danger. Talk about anxiety and stress! Having the Green Line stop and threaten non-masked travelers with arrest while shutting down the trolley temporarily was eye-opening.
Even entering the facility was a challenge. You must be pre-registered and pre-screened, taking off your mask in the lobby and trading it in for a brand new one from DFCI. And, by the way, at least early on – no one else clears the lobby, despite traveling nearly six hours as captain of your support team. Would have been nice to know that earlier – just saying.
Enough about Covid and its challenges…we all suffered through them together.
My next challenges served to test me once (or twice) more.
My “routine blood work” including my request for a PSA test in the Spring of 2022 was troubling, to say the least. Waldenstrom’s maintaining course – check. But what’s the deal with a slightly elevated PSA? My gut told me that, although biopsies taken in 2014 didn’t reveal much at the time, perhaps a repeat was advisable. As an aside, or on a humorous note, my urology practice wanted to schedule a “video visit” during Covid, and my first thought was “how are they going to do the digital rectal exam virtually?”
Got to maintain that warped sense of humor, and as we Wallie’s are well-known for, our due diligence. I requested and received an MRI of the prostate on May 19, 2022. Living with WM; dodging cancers in the stomach and colon, I now had to worry about the prostate, with results that confirmed my lucky streak was over – I have prostate cancer – but it needs to be confirmed by obtaining tissue samples.
I wasn’t able to get an appointment for this surgical procedure as fast as I would have liked locally, so I decided to visit PennMedicine in Philadelphia, where a much better and more accurate biopsy was done, using the MRI scan as a template, then overlaying a live ultrasound before removing a dozen or so samples. Had I not been a WM patient who is finely tuned to all things medical, as it relates to my own care, the hospital may have used the “old” method, as in 2014, where they just take random samples from each quadrant of the gland, which may or may not result in cancer findings. The US fused over MRI is basically like a smart bomb, knowing exactly where the “enemy” was. Eleven of my twelve sample came back positive – I had another cancer.
Again, being a well-educated WMer, I wanted more than one opinion, so I had my biopsy results sent to my local hospital, and DFCI in Boston. While they differed on the stage and grade somewhat, there was no denying it was cancer, and it was active. Now, the choice that remained was “watch and wait,” radiation, or surgery. I conferred with three doctors and of course, based on their specialty, the recommendations were not that surprising. Radiologists want to radiate; surgeons want to cut; and general urology practices want to give you shots and wait for it to get worse.
I decided, while walking from my exam room to check-out, what I needed to do. Get it out of my body – Waldenstrom’s wasn’t looking for a roommate. I scheduled the surgery for September 2022 and had an excellent surgeon and a state-of-the-art DaVinci Single Port robot take out the offending prostate gland. Once and done, this is what I wanted, but no, there’s more. Now I needed nuclear medicine whole-body scans and another targeted CT-Scan. More testing, after the fact. Never know where that pesky cancer will rear its ugly head.
Long story short – no sign of this cancer in the last year. Score one more for me. Now, about that slow-growing lazy cancer that started me on this multi-year journey. My advice and lessons to be learned here – don’t ignore all other tests medically warranted, be they mammography’s, prostate exams, and every other recommended, age-appropriate test.
WMers are smarter than that, right?
See you in another five years, God willing and body able.
P.S. – The two-year Covid-postponed trip to Ireland and Scotland finally happened in June 2023. I got pneumonia in Ireland, essentially cutting my tour in half…but that’s a story for another day.