On Thursday, Nov 16th, 2017, we returned from our third NYC trip this year. I have often bragged that I once went to Hawaii six times over the course of 12 months. I’m about to NYC four times over the course of seven months. Midtown Manhattan might just set the record for most visits in a 12 month period to anywhere away from the general area I call home. Even if it doesn’t set a record, Midtown is certainly starting to feel very comfortable and familiar. Its probably a good thing I love NYC.
Okay, so here’s where I am at. Last September I went to Memorial Sloan-Kettering (MSK) Hospital in NYC so as to inquire about being accepted for the experimental Tookad prostate cancer treatment. (All of this is covered in my previous blogs.) I was ecstatic to hear Dr. Coleman tell me I qualified for the 50 man US study.
50 men will be accepted and formally treated for the US study at MSK. The study formally began in October this year. In my previous blog, I outlined the coincidences that led me to finding out about the Tookad treatment study. Last summer a work associate told me her husband has prostate cancer and although he “technically” didn’t meet the requirements to qualify for the Tookad study, he took the chance anyway of going out to MSK in NYC and meet with Dr. Coleman. It turns out his Seattle doctors misdiagnosed his condition. They only found cancer in one half of his prostate. The discovered cancer was considered low grade, (score of 6 and the study requires men with 7), but Dr. Coleman had him procure a MRI and with the new detailed information in hand, Dr. Coleman performed another biopsy. Dr. Coleman found cancer in the second half; it scored a 7 and voila’ he now qualifies after all! Dr. Coleman applied the Tookad treatment on him just a few weeks ago, (end of October). He was man number 3 of 50 and he is over the moon happy with the results.
Europe completed a 400 man Tookad treatment study a year ago, (Oct 2016) and had very positive findings and results. So positive in fact, that Dr. Coleman tells me the European equivalent of the US FDA has now formally approved the Tookad treatment for prostate cancer as of Tuesday, Nov. 14th 2017. This is very good news!
The FDA, on the other hand, will not formally approve it “yet” because the European study was only performed on men with lower grade prostate cancer. The FDA wants to know if this new treatment will work on men with mid-grade prostate cancer … men like me and my work associate’s husband. If so, the FDA will follow Europe’s lead and I am cautiously optimistic enough to say that I believe in a few years time, prostate removal surgery, (aka prostatectomies) and other standard treatments, (radiation pellets and radiation bombardment) might just become a lot less common as a first course treatment for prostate cancer.
Again, this is very good news. The current standard treatments all come with a large bag of side effects, (incontinence, erectile dysfunction, shrinkage, sterility, and the potential to cause other cancers to form as a direct result from radiation treatments).
Before they can administer the Tookad treatment, I had to first return to MSK this past week because the biopsy my local urologist performed last summer was not sufficient or detailed enough. As a general rule, prostate biopsies are random samples with the hope of discovering cancer. The prostate specific antigen test, (PSA), that men receive after the age of 50, helps urologists and doctors determine whether or not prostate cancer is likely or a concern.
When the PSA test score is higher than five, doctors typically recommend a biopsy. Using ultrasound, random samples of the prostate are removed and analyzed. The analysis is given a Gleason score, (named after the doctor who created it), from 1 to 10, where 1 is noteworthy and 10 is very, very bad indeed. (I scored a 7, which is classified as high-mid range.)
Note that I said “random” samples of the prostate are removed for analysis. Without the details of a MRI to guide them, doctors must rely solely on a live ultrasound. How helpful is the ultrasound by itself? I honestly do not know. I have a friend that had to have a biopsy performed three times before they finally found any cancer. In other words, it wasn’t until his doctors removed 36 samples that they were finally able to determine he had low grade prostate cancer.
Because I “technically” qualify for the Tookad study, my doctor needs to validate my first biopsy results with a second and very specific additional biopsy. The FDA requires he validates my cancer and ensure I qualify for the treatment study. Although I already had a biopsy last summer, this new one will be more exact. The samples need to be removed from areas that can best be highlighted from a MRI in conjunction with a live ultrasound.
It may be unfair to say it like this, but my take on the current health industry standard for prostate cancer treatment is doctors do their best to guess where cancer is hiding in the prostate. They use ultrasound not so much to locate the cancer, but to improve their odds of extracting from the prostate and not accidentally extract from the tissues surrounding the prostate. (Ultrasound helps them ensure they hit the target.) As a result, the extraction samples are random, which means the typical ultrasound assisted prostate biopsy is a crap shoot. Perhaps this is why doctors extract 12 samples … it improves their odds of finding some cancer.
I never asked my urologist about having a MRI performed prior to my first biopsy. One, I didn’t know to ask and two, he beat me to the punch and preemptively threw the whole idea out the window. He didn’t feel an MRI would be the least bit necessary or helpful.
In the US, the standard prostate cancer treatments are either prostate removal, radioactive pellets, or radiation bombardment. In my opinion, all three standard treatments are really blunt instruments. Prostate cancers are not tumors or isolated clusters in a specific place. Consequently, when men are treated for prostate cancer, the doctors simply destroy the entire prostate. This ensures they have successfully removed all of the cancer.
The surgical option is simply prostate removal. Due to my young age, (relatively speaking) the three doctors I interviewed prior to discovering the Tookad option all recommended surgery. Another option, that I do not qualify for, (again, I’m too young) is radiation pellets. In this treatment 100 or so radioactive titanium seed pellets are inserted across the entire prostate. In about three months the radiation completely destroys the prostate, but can eventually cause cancer to form in other surrounding tissues and organs. The third option is radiation bombardment, (I’m including photon beam in this category). This is area specific radiation so as to minimize the chance of radiating other areas near the prostate (bladder, colon, etc.). Radiation bombardment essentially melts the prostate but can still cause cancer in other surrounding tissues and organs. (Before we radiate you young man, please sign this waiver absolving us from any and all liability from now and until the end of time.)
Again, none of the standard treatments are aimed at the cancer cells within the prostate. It’s like you have a sliver in your finger and the doctor, not having tweezers, decides to treat it with an ax. If he chops off the finger he can guarantee the entire splinter will be removed.
Taking this analogy one step further, think of a MRI as being like a magnifying glass. It’s very helpful if the doctor is using tweezers, but there’s no point if all he has is an ax. Today’s prostate cancer treatment is only performed by doctors with axes. Consequently, it really doesn’t matter much what information a MRI has to offer. The doctor doesn’t need a MRI to know you’re trying to hide your hand behind your back. This is why he uses an ultrasound probe. If you try to hide your finger, he’ll just use an ultrasound to locate and cut it off.
With this analogy in mind, my urologist cannot justify or see a need for a detailed MRI. He told me having an MRI is like someone who has to drive to work, but insists on driving a Formula 1 race car or an Aston-Martin. He told me that just because one wants a $350,000 car doesn’t mean the insurance company should have to buy him one. In his words, he emphasized his point by saying patients need to be more realistic about health care costs. Since the MRI isn’t going to change the treatment, what is the point of having expensive extra work performed? You don’t need an Aston-Martin to commute to work. A low cost model is more than sufficient. If all you’re doing is going from point A to point B then a high performance vehicle is overkill.
What we want versus what we must live with!
Consequently, my first biopsy last summer was performed the old fashioned, tried and true method and for surgical purposes it more than did the trick. In fairness to my urologist, neither one of us knew anything about the Tookad study being set up at MSK. Even with 20/20 hindsight I don’t see how I would have done the first biopsy any differently. Still, when push came to shove, the first biopsy turned out to be a mixed blessing. It conclusively proved I do have high mid-grade cancer and the resultant Gleason score qualified me for the Tookad treatment study.
Let’s talk some more about this groovy state of the art Tookad study. In order to effectively treat my prostate cancer with the new drug, (Tookad is like tweezers), my MSK doctor needed me to have a MRI performed. I had this done late September (2017). That’s the good news.
The not really bad news, but not really good news either is that with this MRI information in hand, another biopsy had to be performed. The MRI, in conjunction with ultrasound, can better enable my doctor to extract samples from the areas shown to be most likely to have cancer. He will then analyze them to ensure I really do qualify for the Tookad. Assuming all goes well, the next step will be to schedule the actual Tookad treatment.
This is why I had to schedule a return to NYC for a biopsy. None of the west coast doctors/urologists are willing or interested in performing a biopsy to the exact specifications required by the FDA for the Tookad treatment study.
Now the fun begins … the second biopsy was originally scheduled for Monday, November 13th, but due to a MSK scheduling oversight it had to be rescheduled Wednesday of the same week. All the fun details are spelled out below in the lengthier blog. For summary purposes, I just received news, (Friday November 17th), the analysis results from the second biopsy have been completed. And yes, it has been confirmed that I formally and officially do qualify for the Tookad treatment! God is great and I am so grateful for everyone’s support and prayers. This journey has been nothing short of miraculous and I gladly, happily give God all the credit and glory!
I expect, either just before Thanksgiving or early the week following, to receive a call to formally schedule my appointment for the Tookad treatment. This too is great news as MSK wants me back early December when airfare prices is relatively cheap … compared with mid December forward when airfare to New York sky rockets for the Christmas season.
Assuming all goes to plan, I will spend one full week in NYC and then I’ll be done, save but for the follow up visits (one month later, three months later, six months and a year later). If the Tookad treatment is unsuccessful the first time around, then there may be an option of trying it again. And if that doesn’t work, I’ll still have the option of going with the ax and having my prostate carved out of me.
Okay, this really is the short version of where I am currently at. The remainder of my blog covers a lot more of the specific details of our latest adventures in NYC. It was a very good trip. In fact, they’re always pretty good, but as I explained to an old friend, our NYC trips are good because we’re working our butts off to make lemonade …
Blessings to you and yours and thank you for reading!
A layman’s understanding and explanation of prostate cancer for people with even less knowledge about it!
Prostate cancer doesn’t form like a cyst or a tumor. Its a different kind of cancer. In addition, there are sub-types within the cancer. Some prostate cancers are very aggressive. They’re like imprisoned terrorists. The sooner they can escape the prostate jail, the sooner they can kill you and that is all they think about. Other prostate cancers are much slower growing and not very aggressive at all. They might kill you someday, but there’s every chance you’ll die from something else long before they pose a serious threat. Finally, there are other cancers that are just there to scare you. They show up in tests as cancer, but that’s all they do – show up and make you worry about having cancer. These guys will always be present, but they’ll never grow or become life threatening.
The problem with these sub-cancers is that all cancers look alike. Science cannot tell them apart. When they find prostate cancer they have no idea if it’s a psychopathic terrorist, a punk with criminal intent, or a spooky trick or treater. Consequently, doctors err on the side of safety. It is better to treat all cancer as though it were aggressive terrorists then wish you had. Sadly, and as a result, of every 37 men treated for prostate cancer, only ONE has the aggressive, psychopathic strain. That means a lot of men will have to live the rest of their lives with the side effects from having the current standard prostate cancer treatment.
The treatment I qualify for, (Tookad), is completely different. From what I have gathered and concluded so far, the only side effect is sterility. Otherwise I should be pretty much be back to my normal self within a few days following the procedure.
Okay, so last September it was determined if my Seattle doctor’s findings were correct I would qualify for the Tookad study. But, to make it official, MSK said I was also going to need a MRI. They promised with a MRI in hand they could possibly schedule the Tookad study treatment as early as mid October. I had to remind MSK the Tookad study would just have to wait a few weeks as I had already booked my October family vacation in Hawaii! (As you can see, I really do have my priorities in order.) 🙂 To their credit, MSK totally understood and agreed Hawaii should come first. See, even if I do have the aggressive psycho cancer, there is time. We caught it early enough!
When I returned from Hawaii, MSK called again, but unfortunately, this time they were not calling to schedule the Tookad treatment. They were calling to schedule another biopsy.
It’s probably a good thing I really like NYC. It’s growing on me … maybe like a bad rash, but it is growing on me! The real hardship is not so much the cost, (over the years I have managed to save up miles, hotel points and some dollars for this kind of unplanned traveling). I don’t like dipping into these assets and funds, but I’m grateful it is there when I need it. The big complaint I have is simply the inconvenience. Besides missing work, it’s a six hour flight to the east coast. NYC is three hours ahead so this disrupts our sleep schedule. Wanda has to dip into her sick leave and that too is a burden. Neither of our work loads take time off or are picked up by others. In point of fact, I’m still wrestling with issues, messages and e-mails from last September’s trip. Sorry, I don’t really mean to complain. One must do what one must do and it is what it is. (PS: I’m writing this my first day back. I had the second biopsy performed on me yesterday. We pretty much didn’t get any sleep last night. We took the 6AM flight home this morning (3AM Pacific), which means I’ve bee up since midnight west coast, so I’m writing grumpier than normal and a little pooped out – literally! Okay, I know, too much detail, right?) 🙂
Okay, enough of that! So, MSK calls and I book my second biopsy for Monday, November 13th. Then, just one week before, I get another call from MSK telling me there is a scheduling mishap. They didn’t realize they were understaffed November 13th. They ask me to reschedule either the Monday before Thanksgiving or the Monday following!
I do my best to avoid flying and traveling near and around the holidays. I used to be a road warrior for Costco and the experience has taught me pretty much every do’s and don’ts about travel. For roughly five plus years as a road warrior, I had to pinball travel nearly every week of the year around all of North America; from Anchorage to Puerto Rico, from St. John’s Newfoundland to Kailua-Kona, Hawaii. I loved it at first because I was recently divorced and unattached. Suffice to say, there were many perks!
Its important to point out I did much of this work prior to 911. Before the terrorist attack on the World Trade Center buildings, airlines use to treat frequent flyers like they were gold (some of you might argue they still do, but I can assure you it use to be much better). I was often top tier on three airlines annually, and back then, airline frequent flyers carried a lot of clout. USAirways once held up my flight from departing because they knew my connecting flight was delayed. I was almost always upgraded to first class. In addition, I also had premier status with two major hotel chains, and they too treated me as king. Hotel points were worth a lot more too. Back then, 60k Hilton Honors points got you a week at the Waikaloa Hilton. Today, 60k barely gets you a night. I had accumulated so many points that I would often casually give them away. Even my family vacations were seldom anything less than business class. When I took my kids on vacation they quickly became spoiled and accustomed to traveling first class. Sometimes my children would point to the people seated in coach and ask, “Are those bad people, Daddy? They don’t look the least bit happy do they? Why is the airline punishing them? Did they murder someone? Should we be afraid?”
Okay, not really, but the point is, I learned how to travel smart and one thing I learned quickly is to minimize travel during the holidays and never, ever fly the week before or after Thanksgiving. Consequently, when MSK asked me to rearrange my biopsy schedule I was not very agreeable to the idea whatsoever. I argued that since I already had made travel arrangements they should try to schedule the biopsy for later the same week. They said they would try and if they could they would get back to me and let me know. Well, that was on Monday and my flight out was the upcoming Saturday. I didn’t hear back Tuesday, so I called them Wednesday and they said they were still working out the details. I called them again Thursday and they promised to work it out to my benefit, but it still needed to be confirmed. I think it was near the end of the Thursday when they finally let me know I had been successfully re-booked for the following Wednesday (like the Tom Petty song, “The waiting is the hardest part.”). The good news is I kept my flight reservation going out on Saturday, but the bad news is that I had to change my return date and hotel stays. These are minor annoyances and I’m just very grateful that it all worked out.
Of course this is just one more lesson to remind me to not try and control everything about my life. If prostate cancer has taught me anything, its that I really have little control over things. I am again grateful that so many people are praying for me. In the end, I just needed to re-realize once more to let go and allow God to take care of me and that’s exactly what he did!
We arrived at JFK airport on Saturday. We spent the first two nights at the Sheraton in Times Square. It’s not a bad property. Westin owns the Sheraton chain and they’ve been promising to overhaul and upgrade the hotels. This one was pretty nice.
Sunday morning I once more attended Mass at Saint Patrick’s Cathedral. Mass was crowded, but I really enjoyed it. I’m starting to really love going to Mass at St. Pat’s. I feel very close to God when I’m there.
Sunday afternoon we caught the matinee performance of M. Butterfly starring Clive Owen. The play itself was okay, but it was very cool being seated in the third row as we were we were very close to all the actors (let’s just say Clive Owen spits a lot!). After the show we got Clive’s autograph as well as the rest of the cast.
Here’s the trick to getting everyone’s autograph. After the show, simply act like you’re somebody muy importante. If anyone challenges you, simply make a scene and challenge them right back. If you do it right they’ll almost beg for your forgiveness. It’s pretty cool watching them back down and kowtow to your swag. Regardless, the goal is to confidently make your way to the back of the stage. Next you simply pound, yes pound, on Clive Owen’s door and insist he answer immediately. Once he does, you must boldly demand he autograph your Playbill. If he hesitates or objects, then inform the Jason Statham wannabe that you have cancer! This alone will get everybody’s attention, and so for best results I insist you play the cancer sympathy card any and every time you can. Hey, cancer is nobody’s friend so one has to milk these opportunities whenever they present themselves, right? Okay, okay, so I made all that up, but you have to admit for a moment you almost bought it, right? (FYI: although the story is fabricated, the autographs are real – honest!)
The next day we moved from the Sheraton to the W on Lexington Ave behind the Waldorf Astoria. The Waldorf is undergoing a major remodel. I stayed there once with my mother and oldest sister way back in 1973. I was just a kid at the time, so as nice as it was, I thought the place was too old, stuffy and very overrated. I did see Charles Nelson Reilly in the lobby and I rode up the elevator one time with Robert Goulet so that was pretty cool. I probably could have got their autographs too if I had been savvy enough to play the cancer card! Drat! Why did I have to get cancer now!
Since May of this year I have now stayed at four different Midtown NYC hotel properties. The next time we’re in New York will be for the Tookad prostate cancer treatment. I’m going to need to stay an entire week (to fully recover) and so by pre-trying out these hotels I have a better idea as to all the pros and cons each property has to offer. For what it is worth, we’re going to try and book our stay at the Le Parker Meriden near Carnegie Hall. They have that awesome “Burger Joint” in the lobby and there is the Chinese restaurant with the great tasting soup noodles a little over a block east.
Until now we haven’t been using the NYC subway system. I want to see and explore the city and that is best done by walking – above ground. By now we’re familiar with Midtown enough that to save both money and time we have finally opted to subway out to MSK and back. I’ve been told the NYC subway is both simple and easy, and it really is, but that still didn’t stop us from making all the typical newbie mistakes (like how people congest and wait for the middle cars, but if you hesitate boarding the doors close and the train leaves without you!).
After checking into the W we decided to walk to Sak’s Fifth Ave and Bloomingdales, but Google maps was displayed incorrectly and we ended up walking to the New York Library instead (Yay Ghostbusters!). From the library we could see we were getting close to the Empire State Building so we made our way there. The sun was just setting and there wasn’t much of a line so we took a ride to the top. Wanda said that was probably the highlight of the trip for her and for the most part I have to agree (and not only because she’s twisting my arm and making me say as much). The Empire was great but we had plenty of highlights this trip, like hitting Sak’s Fifth Avenue where I spent hundreds on gift cards. Maybe one of my readers will be a lucky recipient! Let me know if you’re interested! We passed through Lord & Taylor and Tiffany’s (mostly just to say we did). On Tuesday we finally made it Bloomingdales. One of the service clerks turned us on to a great New York Deli! Man, do they know how to pile up the roast beef! It was both good and surprisingly cheap too. On the way to Bloomingdale’s I made Wanda take a picture of me sitting on the very ledge Jerry Seinfeld leaped from when he formally decided to become a full time comedian (circa 1976). If you don’t believe me, check out “Jerry Before Seinfeld” on Netflix.
Besides the actual biopsy, I’d say the only low-point of the trip was going to the Museum of Modern Art (MoMA). Granted, we did get to see Van Gough’s “Starry Nights” (my favorite of his work) and a handful of Picasso, Matisse, Monet and others, but otherwise, what a bunch of pretentious crap! Adding insult, they had all kinds of posters and books about the works of Andy Warhol, Jackson Pollock and others, but when I inquired where their works were displayed, the customer service girl all but blew me off; and with a very snobbish and insulting glare she smartly spit out, “Those exhibits are long gone.” So we had to put up with this crap instead:
For clarification, photo 1 is not under wraps, but obviously it should be. Photo 2 is a non-working electric basketball hoop. (I even asked one of the staff if he took this stuff seriously … he did his best to say yes, but it was a very weak yes.) Apparently photo 3 is not just a random date. It’s Apr.24,1990 – whatever that means! (I’ll tell you what it means. It means some scammer is getting rich passing this junk off as art!) Oh, and do not try to sit on the plastic lined couch. An armed guard will slap you silly if you even think of crossing the gray line. Finally, there is the remnants from last Halloween. Next to Starry Nights, this was probably my favorite.
Every time we go to NYC we find something new to see and do. If you have the means, NYC will never bore you. If you don’t have the means … well, NYC will still never bore you – You might be hungry, cold and scared but you won’t be bored. Sadly, we saw homeless people on just about every corner. Most of the beggars have signs; one even has a set nicely typed, laminated and taped to the ground. At the risk of turning this blog into a political agenda, it seems to me one true measure of how great a society is, is how well it treats it’s weakest members…
Wednesday was our last day in Manhattan and we spent much of it at MSK where I was lucky to undergo another biopsy. This final section of the blog is a very graphic explanation of my biopsy experience. I offer it because I read where they say cancer is the number two killer of men and within that group prostate is number two following lung cancer. (http://www.idph.state.il.us/menshealth/healththreats.htm) I believe this to be true, but I also believe statistics are what you make from them …
So, on that note, I have graphically spelled out my prostate biopsy experience below because there is a good chance any men reading this blog may someday have to go through it and any women reading this blog will know men who may someday have to go through it. (Let’s pray not, but be prepared if we do!) Warning, the following does not shy away from being dark in places. My warped sense of humor is very active so I caution you before reading any further.
Dark Humor & Biopsy Details
WARNING: DO NOT READ THIS NEXT PART IF YOU ARE SQUEAMISH.
As far as pain goes prostate biopsies are not the end of the world. The doctor numbs you up (lidocaine) before taking the samples, which is good, but note I said “samples” as in many. They took 12 random samples from my first biopsy last summer. I think they took about 20 during the second.
(Caution … TMI ahead) I was told that following the biopsy I should not worry too much about the side effects as they would all go away in a few weeks. In other words, I shouldn’t be overly concerned if I see blood in my urine, in my poop or in my ejaculate. (Oh, great, bloody ejaculate!) The stool blood, if any, should go away after one or two movements. The bloody pee might last a few weeks and the bloody semen, (yes, bloody semen – sounds like a British cuss word!!) could or would last a few weeks longer, but lessen in pronounced color (turning from bright red to a rusty color over time), but again, not to worry even if this symptom lasts 12 weeks or a wee bit longer! Crikey!
Was that too much information? No? Well, if you think that description wasn’t so bad, then how about this sick joke I just made up right now? “What do you call a group of British navel officers found stabbed to death in a whorehouse?” … “Bloody seamen!”
More gross anatomy: Due to the method and nature of retrieving the biopsy samples, there is always the risk of getting an infection. The extraction needles are inserted from the outside, just above the anus and below the scrotum, through the skin, through the colon and then into the prostate. As you can imagine, (please don’t – just know that you can!) the colon is not the cleanest area of the body. I had to take exceptionally strong antibiotics (cipro) the night before, the day of and the evening following the biopsy. Additionally I also had to self-administer an enema an hour or so before the procedure.
Lucky me, I was awake for the entire biopsy procedure. The good news is that thanks to the lidocaine, it was not very painful (pricks and baby stings). Perhaps the worse part is the ultrasound wand. Even though they heavily lubricate the stick, its where they “stick it” that gets to you! Right up the wazzoo! And if that isn’t bad enough they repeatedly fidget with it. Even with lubrication, one is keenly aware of every push, pull and twist … and there is a lot of pushing, pulling and twisting! When it was all done I think I had squeezed the operating pad hard enough to leave a permanent imprint. (Additionally, the wand and I are now engaged. Wedding announcements will soon be forthcoming!)
As far as the actual extraction goes, think baby bee stings, but the noise the extraction equipment makes and the pressure made me think they were using an electric stapler. The extraction makes a loud popping sound. I couldn’t help but wince and tense up.
Oh, and if a doctor is reading this, then please may I make a suggestion? Be careful with your word choices to the patient. After three or four extractions my doctor would say, “Okay, just one more”. And I’m thinking, “Great, we’re done after this next one. Whew! That wasn’t so bad”. But, no, what he really means is just one more extraction in this “round”. What he isn’t telling you is that there are three or more rounds with four extractions each left to go!
Luckily, the whole procedure only takes about 10 minutes. In some ways, it’s the 30 minutes following that I found to be the most disheveling. First, the ultrasound probe up my ass caused some minor bleeding. When the probe is removed the attending nurse performs a “cursory” wipe, but I could feel much more was needed. So they handed me a wipe and a diaper and then encouraged me to hurry up and get dressed. I just wanted to leave and go back to my hotel, but they said not until I first take a healthy piss. They need to insure the urethra isn’t clogged or pinched by the prostate swelling. Let’s just say I was happy that I had the urge to go. In addition to peeing I was relieved I could also do a more thorough job of cleaning myself with water and soft towels from the sink (Soft towels? Yes, but at this point I would have used sandpaper!). Once I felt I was relatively clean I immediately started to feel much better, but I kept the diaper on as a precaution.
Looking back now, a few days following, I can say it really wasn’t all too horrible. It’s disheveling and stressful and I wouldn’t wish it on anyone, but sometimes you just do what you have to do. The biopsy was an annoyance but its probably the stress I placed on myself prior to the biopsy, above anything else, that wore me out the most. I didn’t sleep very well the night before. My blood pressure was high and the waiting for over an hour to begin didn’t help much either.
Before the biopsy I honestly thought I would be back to my normal self in short order. Boy was I wrong.
Wanda asked if we might have some time this trip to see the Guggenheim Museum. I said of course as I figured since MSK is only a couple subway stops away we could go up there following the biopsy. After all, I just knew I would speedily recover, and we’d spend the rest of the day exploring. Ha! There are times in my life when I think someone has sneakily put me on crack! What was I thinking! Anyway, after the biopsy I only wanted to get back to our hotel room and rest. Fortunately we were able to make our way back quickly as the W hotel was a quick two subway stops away. I’m hoping we can see the Guggenheim in a couple weeks when we return for the formal cancer treatment (before the treatment of course and not after!).
Well, there you go! The biopsy was performed Wednesday Nov. 15th. I returned to Seattle Thursday and on Friday afternoon, (Nov 17th), MSK called and said the biopsy results were in. The biopsy formally and officially confirms my qualification for the Tookad cancer treatment study.
Last summer I was told by my Seattle urologist that I had a Gleason score of 3+4=7 and the MSK biopsy last Wednesday confirmed it. For me to qualify for the Tookad treatment study I needed to specifically have a 3+4=7 Gleason score. There is such a thing as a 4+3=7 but that would have disqualified me … don’t ask me why. It’s been explained to me before but all I heard was that I had cancer. Nothing else registered at the time.
In addition to the qualifying 3+4=7, the MSK biopsy also found a 3+3=6 in another section of the prostate. This score is considered low grade and it won’t be treated during the Tookad treatment. MSK suggests I simply monitor it. Should it ever advance to a 3+4=7 (a year from now, 10 years from now, never – who can say?) we can talk about treating it at that time.
There is the also the possibility that treating my Gleason 7 will have a side effect whereby the drug and my immune system will naturally attack and destroy the other area(s) with cancer (like the Gleason 6). We’ll know more for sure a few months following the Tookad treatment.
This trip has been filled with mysterious coincidences … Christ-instances really. For example, in my first biopsy last summer, the results showed that I had 3+4=7 mid-grade cancer. I don’t believe it showed the 3+3=6 low grade and that is my point. Like I said earlier, biopsies are best guess crap shoots so had my urologist missed the 3+4=7 and only caught the 3+3=6, I would have concluded that I do not qualify for the Tookad cancer treatment study. I would not have applied but I would have resigned myself to going with surgery instead. Coincidences like these cause me to stop and ponder. I doubt I’ll ever understand what it all means in this lifetime, but knowledge is not my end game … Faith is my end game and events like these draws me closer toward the Creator. I live forward in awe, amazement and gratitude!
Well, that’s it for now. I’ll update again once hard dates are scheduled and the Tookad treatment trip is planned. If you have any questions please let me know. I’ll do my best to answer them. I really do need and appreciate your prayers and loving support. Right back at you by the way. I hold you in my prayers and lift them up to God. May his grace come down and firmly rest upon you … in Jesus name, Amen!