Showing posts with label NIH. Show all posts
Showing posts with label NIH. Show all posts

Thursday, July 2, 2015

Back from the Beyond

Previously on MondoBlahBlah...
Previously to that on MondoBlahBlah...
Previous to that on MondoBlahBlah...
Even more previously than that on MondoBlahBlah... 

It’s all gone now. All the bandages and adhesive (taking a lot of hair with it). The Jackson-Pratt drain (an ingeniously simple device for eliminating yucky stuff). The Foley catheter (another ingenious, though vastly more annoying device for draining yucky stuff). And of course all the incidental bits including the prostate itself, the seminal vesicles, a few lymph nodes and a bit of adjacent fat, just for the fun of it. All gone. I am now off the meds and able to move freely about the cabin. The gooey morsels have been transferred to a spooky lab in the bowels of the NIH for slicing and dicing and I expect to get a report about how awesome they all were within a couple of weeks.

Finally disconnected from the tubes and tapes I ran right home from the hospital and cut the grass. Funny how strong the domestic instinct becomes – after literally watching the grass grow outside my window for a week I couldn’t wait to attack it with my handy lawn grooming implements and bring my property back into compliance with the neighborhood’s unspoken standard of landscaping conformity. The next day I strolled with a friend to the local brewery for lunch. Mmm, beer. Not better than OxyContin, but tastier for sure.

It should have been harder. From some of the stories people shared with me, I was expecting recovery to be a horrifying experience leading to the possibility of having an indwelling urinal catheter for the rest of my life, having life-threateningly impacted bowels requiring an extremely risky experimental “caca-ectomy”, and possibly ending up in an iron lung. Thanks all for sharing the harrowing tales of your father-in-law, the husband of someone you work with and some guy you once knew. They prepared me for the worst eventuality, which happily did not come to pass. While I was still in the hospital, in preparation for the possibility that stairs might prove impossible during my convalescence, the Managing Partner rearranged our guest bedroom. We thought I might have to stay there for weeks. I lasted one night before moving back to my gloriously sunny master bedroom upstairs. Stairs have proved no impediment. There are presumably limits to the physical activities in which I should engage, but if you saw me in public, two weeks out of surgery, you would no longer be repelled as if from some shambling, broken thing.

If the story you shared (or have heard) was over about ten years old, we’re really talking about a completely different procedure. Robotic laparoscopy has revolutionized prostate surgery. Likewise, if your father-in-law was over 65 when he had his surgery, it stands to reason his recovery would be more difficult than that of a 51 year old. AND, as most of you know, I have the body of an elite athlete. A true Adonis-like specimen, me. The doctors keep making reference to my “athletic” profile contributing to the prospect of a rapid recovery, which I find absolutely hilarious. This designation derives from my marginally enlarged heart which manifests itself in a low resting heart rate and very slightly abnormal EKG results. It is testament to my consistent cycling over the past decade (though still only barely achieving recommended guidelines for regular exercise) and the wretched health of the American general public that a middle age, overweight, former chain smoker is identified as an “athlete.” Combined with the unparalleled skill of the NIH surgical team, my relative youth (ha!) and extreme vigor (kack!) portend a speedy return to normal human activity.    

Thursday, April 30, 2015

Second Opinion

Previously on MondoBlahBlah...
Even more previously on MondoBlahBlah... (is the reverse chronology working for you?)

It's in there somewhere...
I'm an educated consumer. I don't just buy the first product I see on the shelf at eye level, the brightest packaging, the first one to come up in a Google search. I subscribe to Consumer Reports, I read Amazon Reviews; especially the bad ones. So of course I'm going to get a second opinion when told I have cancer and should have one of my organs either blasted with Fukushimatic levels of radiation or ripped out by the roots. Following my meeting with the NIH Multidisciplinary (Multi-D) Team, I took all my reports and images back to the urologist I've been working with for the past couple of years; the one who ultimately sent me to NIH in the first place.

My intent was to get some independent feedback on the recommendations and treatment options presented by NIH. I figured as a urologist, Dr. X (not his real initial) would have worked with patients who had undergone the suggested therapies and have a sense of the outcomes. I was hoping he would be able to help me know what to expect both in the near term and in the future. I hope to live for several decades after the cancer is cured - what can I expect? What will it be like to live without a prostate? How will my quality of life be altered? 

I was more or less ready to be told, as I was, that the surgical option had a very minor advantage over the radiation/hormone therapy for a relatively young man such as me (born as I was, in the late days of the Kennedy administration). What I was not prepared for was Dr. X's assertion that I should not have the surgery performed by NIH. He thinks I should have him perform the surgery at my local regional hospital. It turns out he's part of a collaborative group of urologists who specialize in robotic surgery. This was news to me.

What a lovely shade of lavender my cancer has...
So, of course I asked him why not NIH, one of the nation's premier institutions. His response was tentative and completely lacking in any objective criteria by which I could make a decision. It boiled down to, "I do this a lot. Trust me." Let's just say I found the good doctor's explanation less than convincing. I'm not really the trusting kind when it comes to who to let remove my organs. And I guess my skepticism showed because he referred me to his mentor for a reference, the guy who taught him the da Vinci system.

Look, I like Dr. X. I feel he's been honest with me up 'til now, and I genuinely appreciate that he has persistently pushed me to get the right tests to catch this as early as possible. Nevertheless, I want to make sure I'm making the right choice for the right reason. I can't ignore the fact that the man is in business and has even exhibited a certain entrepreneurial flair. I mean, did you see that website? Pretty slick, right? I have to ask myself if his recommendation is motivated by genuine concern for my well being, or for his desire to make money from treating me. Aside from the good doctor's understandable certainty that his private urologist's surgical skills are superior to those of some GS-15 gubmint doctor, could Dr. X have an ulterior/profit motive?

Well, let's see...

It's a living...
Dr. X is trying to talk me out of socialized healthcare at the government facility that finally found the cancer after another world class university institution failed to do so. Plus he wants to do the surgery at a hospital ranked by US News & World Report as #15 in Maryland and #13 in Washington metro area (43.4/100 in Urology and 25.5/100 in Cancer). Interestingly enough, one of the key ranking criteria under Cancer is that the hospital is an NCI-designated cancer center, and he's trying to talk me out of getting treated at NCI itself. Curiously, NIH is one of the very institutions cited in the Why Choose Us section of Dr. X's own website as a location at which his team received their training. Has the student surpassed the master? If so, Dr. X couldn't articulate it in any sort of meaningful way.

He could be expected to make anywhere from from $4000 up to about $19,000 in fees for the procedure. That's a drop in the bucket for someone likely making upwards of $300,000 per year, but I presume every bit counts. And I note that both he and his mentor practice in a system in which the CEO makes upwards of $2 million per year. So is Dr. X's opinion influenced by economic considerations? You decide...

Join us next week for another exciting episode...

Thursday, April 23, 2015

Pro Gnosis

The source of all the trouble.
Previously on MondoBlahBlah...

I had the consult with the NIH multidisciplinary team on Wednesday. In (very) short, the prognosis is quite good, though they want to treat aggressively. The cancer is still encapsulated in the prostate, and of very low volume, so they feel that given my relatively young age, there is an extremely good chance that this can be nipped in the bud so I can go on to live long enough to have my heart kill me. They have a way with encouragement, these guys.

They have laid out two recommended courses of action (Christ, do they actually call them “modalities”?) I do not yet comprehend all the details, but am rapidly coming up to speed. They are, not in any particular order:

Radiation/Hormone Therapy
Eight weeks of radiation and two years of hormone therapy, basically ridding the body of testosterone which effectively starves any cancer that survives the blast of radiation.

Surgery
Laparoscopic radical prostatectomy using a device called a daVinci robot. This is just what it sounds like – chop it out. If I read the NIH team accurately, this is their preferred approach, though that may just be because when you have a da Vinci robot, everything looks like a prostatectomy.

Both approaches have been pitched as equally effective and ultimately curative. Each has its own set of risks and potential side effects. The hormone therapy would turn me into Bruce Jenner for about three years and the surgery is, well surgery. Both promise the possibility of sexual and urinary “lifestyle adaptations” meaning I could potentially become an impotent bed-wetter, but they assure me that most men of my age who go through the procedures go on to live fairly normal lives with only comparatively modest accommodation (e.g., boner pills, etc.).

So, I'm now in the process of compiling a list of questions and I’m making arrangements to meet with my urologist, whose opinion I have come to trust, to get his take on it. The NIH team assures me that there is no urgency to decide on what treatment I prefer, and have encouraged me strongly to seek other opinions and carefully consider the options. On the whole I am very pleased with the NIH team’s manner – I had five doctors from the Urology Oncology Branch, the Radiation Oncology Branch, the Medical Oncology Branch, the Department of Molecular Imaging and Radiology, and the Department of Pathology spend nearly two hours talking to me about the details of my case and answering questions about the recommended treatment options. I was genuinely surprised to have such attention lavished on me, but then you’ve got to remember, these are federal government doctors, not for profit doctors; so they’re probably not under the same kind of pressure to turn over the table, so to speak.
 
Join us next week for another exciting episode...

Tuesday, April 21, 2015

April's fool

April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.
Winter kept us warm, covering
Earth in forgetful snow, feeding
A little life with dried tubers.

I've heard that some dogs can smell it, though what sort of odor abnormal cell growth could have is beyond my ability to imagine. Maybe I should have just gotten a dog. Might have saved some time. Now, after almost a year, two MRIs, assorted EKGs, CT scans and four biopsies, the men in the lab coats finally have what they've been searching for. As my brother said, if you let doctors dig around long enough, they’re bound to find something. It took them 84 needle pokes but they finally found it. Gleason score 4+4, 5% whatever that means. Funny word “positive”.

I’m enrolled in a research study at the National Institutes of Health, trading my samples for treatment. I’m young for this kind of thing, so they find me interesting. Maybe there’s something they can find in my genes that can be of use. I am now a patient on the same campus where they treat Ebola patients. Me and my little ‘ol prostate. Go figure. Though I guess I’m lucky to live so close to such sophisticated facilities, and to qualify for such exceptional attention, this is hardly the way I wish to be “special”.    

The doctor who called me with the results of the latest tests told me that the volume is low and seems “contained”. On Monday I went in for bone and CT scans. Staging scans, they’re called. They determine what stage the disease is in. All the world, after all, is a stage. Then on Wednesday I went in for a consult to hear the recommended treatment options. Cut it out with a blade or laser, irradiate it, blast it with drugs or some combination thereof.

I can add “11:35 am, April 1, 2015, in my car on the way to a meeting in White Oak” to my where were you when you heard the news list.

Of course I haven’t really started to even use the word yet. It gets a lot of attention when I do and I don’t want to induce any unnecessary freaking out. Plenty of time to freak out later. For now it’s just the constellation in which I was born and since I don’t believe in astrology it’s no threat at all.

Join us next week for another exciting episode...