Wednesday, February 29, 2012

Silver Lining

Perhaps the most reassuring words spoken by Dr. Einhorn yesterday were the following:  "There isn't a dark cloud hanging over you."

The trip to Indiana was well worth the expense.  After an uneventful flight we checked in to the IU campus hotel which was directly across the street from the hospital/medical center where I had my appointment.  We got up around 7 and put on our cold weather running gear, and first took a jogging tour of the campus (mostly to see where my appointment would be later that day) and the jogged into downtown.  We read all of the historic/tourist signs we found downtown near the state house, then had breakfast at Patachou (home of the best cinnamon toast you'll ever have).  After breakfast we did some more jogging/exploring around downtown, running through the historic canal towpath which was really nice, then jogging across the White River twice until we finally reached the hotel again.  A pretty good distance, especially on a full stomach, probably in the 4-5 mile range round trip.

I showered and got dressed first (in a suit, of course) and while Julie was getting ready I took all of those medical documents, slides, and CDs I'd collected on Friday and Monday and walked them over to Dr. Einhorn's office.  While my appointment wasn't until the early afternoon, I figured I'd drop them off earlier (it was about 11 am at this point) in case they could be reviewed before our appointment.

After that Julie & I met up and tried to make time pass as quickly as possible leading up to the appointment.  It's hard not to let your imagination get the best of you as you watch the minutes tick by.  "What if he says this?" "What if he says that?"  You get the idea.

Last Friday after our meeting with the chemo nurse when we heard what chemo would be like and that Einhorn was interested in meeting with us, I immediately ordered a Kindle Fire tablet from Amazon.  I prefer printed books, but at $200 the Kindle offered easy access to books (borrowing through Amazon & my local library) plus a decent tablet computer for the numerous Netflix and other on demand I'll be watching.  The iPhone screen is so small comparatively, although it killed me to buy the Kindle when I know there will probably be a newer, bigger version out soon.

Anyway I mention that b/c I had received the Kindle before we left for Indy, and had borrowed several ebooks from the library for the trip.  I tried to read to pass the time but my mind wouldn't concentrate.  I'm not even sure what I was/am worried about or scared of.  Not death (at this point), or of meeting the doctor, or even chemo (again, at this point).  The unknown, I suppose, but even that doesn't sound right.  But scared I was, sort of an empty scared feeling in the pit of my stomach.

About 30 minutes prior to the appointment we went up to the cancer center and checked in.  From there another hour or so wait with other patients and family.  Everyone is there for the same reason, someone has cancer.  But no one looked like me (or Julie, for that matter).  I know how this will sound initially but hear me out.  Everyone looked sick, and old, and beat up.  Whether the patient or the family, they all looked bad, terminal.  Meanwhile Julie and I young(ish), healthy(ish), we're dressed up like we are going someplace special (because to us, we were).

Perhaps most importantly I don't feel sick.  Throughout these last three cancer diagnosis(es?) I've never felt sick until I received treatment.  Even the initial bump I felt on my testicle that started this whole mess never hurt, it was just a strange, pebble sized thing I could all of the sudden feel one day.  Each time I've been diagnosed I've gone to see a doctor feeling 100%, only to have some treatment that knocks me down a bit and makes me feel like crap for a while.  Reading back through the posts on this blog you can see my resolve failing a little from diagnosis to diagnosis.  I still think I'm in a pretty good place, but this time is certainly harder than the last, and a hell of a lot harder than the time before that.

The doctor was running behind but we had no where to go and that was fine with us, aside from the growing tension I suppose.  Julie had brought a notepad and we had written down a few questions to ask, but otherwise we just sat with me pretending to read and Julie looking at trashy celeb magazine.

Finally we got called back and I got the first (and only, really) bit of bad news.  They took my vitals then had me take off my shoes and measured my height.  5 feet, 7.5 inches.  5'7.5"???  I begged the nurse to put down 5'8" but I don't think I convinced her.

Vitals all looked good (except for that stupid height) and then we were directed to an exam room and told the doctor would be with us shortly.  10 or 15 minutes in a youngish female doctor came in and said she was a fellow working with Einhorn and would do the initial exam, which would be followed by Einhorn.  We went through the timeline of this entire process, starting with my discovering the lump through to our arrival in Indy.  Lots of questions about how I reacted to various treatments, which I choose the ones I did, etc.  That was followed by an exam of my remaining right testicle (always fun to drop your pants in front of strangers so they can touch your privates), and then we were again waiting for the doctor.

Not too long after the fellow left Dr. Einhorn came in, we did our introductions and then got down to business.  He had a lot to tell us, so we basically let him speak without interruption unless he was looking for a response/asking a question.  He was as nice, maybe nicer, than we had imagined.  A very comforting presence, he might be the best in the world but he didn't rub it in your face.  He knew our biggest concern was that there was something really wrong with me, different from other patients, and he did his best to reassure us.  That's when he gave us the "no dark cloud" line above, and said that much like flipping a coin the statistics for recurrence were always the same, they don't build on each other from one treatment to the next.  Just as you might flip a coin 5 times in a row and get heads, but on the 6th flip your odds are still 50/50.  The same was true, he explained, with my cancer.  There was a certain percentage chance that it would come back after surgery and that single carboplatin chemo (low, but a chance) and it did.  And then the odds started over when cancer returned and I had radiation, low again but a chance it would come back.

I'd taken a circular route to get to the big guns treatment of BEP chemo, but that's where I was now.  He all but guaranteed I would be cured by this.  He said something like "you may not want to hear this because you might feel jinxed, but this is going to cure you.  As a doctor I can never say 100%, but this is a medically close to 100% as you can ever come."

Undeterred we still asked "that's great, but we have to know:  what if it does come back?  Are there any treatment options left?"  He reiterated that this would cure me, but that there would be some other options for treatment (survival chemo, I believe he called it) if it came back.

A lot of this was on Julie, I did pretty good right up until Dr. Einhorn came into the room.  Then I had a bit of that deer-in-the-headlights thing going on.  I tried to answer his questions but often had to look to Julie for help.  I tried to explain to him near the end that I really appreciated him seeing us on short notice, and that it was really an honor to have him consulting on my case.  I always hope people can tell when I'm being sincere about that, and I also like to think the love and support Julie and I have for each other comes through.  I think it does, and that genuinely nice people feel better about helping you when you don't come off as a dick.

I'm not going a good job of describing just how pleasant and reassuring Dr. Einhorn was.  This was a very expensive trip since it was booked just days before, but it was well worth the money.  I told Dr. Einhorn we had one more question for him:

"If you were in Indy for just one night, where would you eat?"

"If you like steak," he said "you should to to St. Elmo, and you have to get the shrimp cocktail, it's a real experience."

We had already heard of the place from others so  that solidified it.  A Tuesday night, in downtown Indy, and the only reservation we could get was for 4:45.  Since we'd skipped lunch and now had waves of emotions (and a release of all of that tension) 4:45 was ok with us.  It was about 3:30 at this point so we headed downtown, stopped at a bar to try one of the local microbrew beers (Sun King's Osiris Pale Ale) then walked in for our 4:45 reservation.

Einhorn's recommendation didn't disappoint, and he was right the shrimp cocktail was an experience.  I'm not sure it was a good one, but an experience none the less.  Loaded with horseradish (look I love spicy food, I can practically chew on a piece of horseradish, but this was insane) it was so hot your sinuses and head were just throbbing with each bite.  But the steaks and sides were great, and Julie & I were relieved and sometimes teary eyed.  We kept commenting how strange it was to be relieved and excited, when I still have 3 months of hell coming up to receive the chemo.  But we were relieved and excited.

When we got back to the hotel we packed and almost immediately went to sleep.  About 3 hours later all that meat, salt, and wine caught up with me and woke  me up for some water, and then I didn't got back to bed until almost 4.  After the water had done it's thing, the reality of the upcoming treatment slipped into my mind and wouldn't let go.  These next few nights leading up to Monday are probably going to be spent tossing and turning, heading out to the couch so I don't disturb Julie.

A miserably turbulent early morning flight from Indy back to DC, followed by a nap of a few hours with Bica, and I'm feeling ok again.  The final follow up drs appointments this week and then 5 days of chemo starts Monday.

Monday, February 27, 2012

I'm Not Ignoring Your Calls

Another day of running around calling labs, visiting hospitals, faxing forms and requesting records.  I picked up the pathology slides (from my most recent biopsy) this morning from Sibley Hospital, at the same time I requested CDs of all of the CT & PET scans I've had there.  The slides were ready as I had already faxed over the request last Friday, but the CDs took about an hour to burn.  I also received photocopies of all reports that go along with those scans.

I also heard from my Urologist who had contacted GW on my behalf about the slides from my original testicular tumor.  This Urologist is the best, he's a great guy and did all he could for me to get those slides today.  It doesn't look like that's going to happen, but at least they'll be overnighted to Einhorn in Indiana before the end of the week.  And there is still a chance they'll be ready today, I'm going to call around 3 to see if they are ready.

Once I got back home I started scanning in all of the paper documents and copying the CD's onto my home network.  I'm starting my own one-man medical library.

When we got home yesterday from the beach and I had time to really review Julie's handiwork with my haircut, I realized it needed a lot of clean up.  In Julie's defense those shears we were using were for a beard, not for shaving your head/getting a haircut.  That's why she first has to use the hair scissors to get the hair short enough for those electric shears to even have a chance at cutting the hair.  The shears/beard trimmer has nine settings, one being the shortest hair (stubble), and 9 being about 3/4 inch long.

Since there was a lot of clean up needed on my head I decided to put the trimmer on the longest setting we had used and just run it all over my head for a while, trying to catch the many strays and uneven spots.  "Julie," I asked "was the longest setting we used 8 or 9?"
"7." Julie replied without hesitation.
"7?  Really?"
"Yes, 7." my lovely wife confirmed.

Well you can probably see where this is going.  Because of my love of and trust in my wife, I didn't put it on 7 and test the length by running the trimmer over a side-burn or anything.  I put it on 7 and went whole hog, starting at the front I took the trimmer straight back as I stood in the shower.  The trimmer struggled and sounded like a lawn mower that hits a deep patch of wet grass.  Uh-ho, I thought, as I watch what was left of my hair fall onto the tub floor.  Oh well, I had intended to shave it this weekend anyway.  So I continued over the rest of my head for the next 15 minutes.  I called Julie in to help me make sure I hadn't missed any bit patches of hair.

"You cut it really short!  It looks good though." Julie commented as she walked in and saw me.
"Yes, it does.  It turns out 7 was not the longest setting we used the other day"

Julie's confused face slowly turned to a big, guilty smile as she realized what I was hinting at.  "Ooops!" she said before we both started cracking up.

Mostly friends and family reading this blog.  I wanted everyone to know I appreciate the calls/texts/emails but I'm unlikely to return them all.  When I have info that can be shared on a very public place like this I'll post it, otherwise details will fan out via immediate family.  Things are really good right now, I'm not sitting around depressed or miserable.  Part of that is the busy work that's involved in red tape and tracking down records, but most of it is that so far that I'm really in good spirits.  Both Julie & I have our moments, but for the most part we're both doing well.

We've off to Indy in a few hours.  Assuming I'm back on Wednesday as planned I'll post an update then.

Sunday, February 26, 2012

Why Couldn't He Be At The University Of Hawaii?

Friday ended up being a lot more exciting than I'd anticipated.  Julie & I headed to the Oncologists office where I'll be receiving the chemo to meet with the nurse in charge of scheduling and administering the medication.  This was the trip where we'd finally hear the gory details of what this particular treatment (BEP) would entail.  

We'd met this woman before, back in 2010 when I first had that single dose of chemo (carboplatin) after the surgery to remove my left testicle.  The nurse is very nice, and she also levels with you.  She told us this would be rough, I'd lose my hair (as expected), and then went over the various other side effects and what to watch out for.  Basically this is going to be really rough, and it's going to suck.

The schedule works out as follows:  I'll receive 3 courses of BEP, each course is 3 weeks long.  The first week of each course I receive chemo every day for 8 hours a day.  That's right, week one of each course is daily chemo (Monday to Friday) from 9 to 5.  The drips are slow, and are often switched out to a saline bag to flush my system and try to keep my kidneys from being damaged.  Weeks two and three I only receive treatments on Mondays, and then it all starts over again the following Monday.

We spent a while with this nurse discussing the treatment, schedule, side effects, and various other matters.  After that we met with the doctor to get the results of all of my recent tests and to discuss the plan going forward.  All of my other tests looked good, and the doctor told me he had again discussed my case with Dr. Lawrence Einhorn, world famous (to those with testicular cancer) for saving Lance Armstrong.  Einhorn is the best there is when it comes to treating this cancer, literally changing the survival statistics from testicular cancer with his pioneering treatment.  Einhorn had a few recommendations for my doctor about my case, but also said he would be interesting in meeting with me if I was so inclined.  Of course Julie & I jumped at the chance, and contacted Einhorn's office immediately to schedule a consultation.

His office was able to fit me in on Tuesday, so we bought tickets to Indianapolis (Einhorn is associated with Indiana University) and immediately starting running around trying to obtain all of the necessary records from the various doctors I've seen.  This is harder than you'd think.  Paper records are no problem, my Oncologist said he could get all of that to Einhorn prior to my visit.  But actual electronic copies (on CDs, mostly) of the various imaging scans I've had are harder to obtain quickly.  Even more difficult, I needed to obtain the actual pathological slides from the two cancers which have been biopsied (the original in 2010 and the most recent in 2012).

I think I'll be able to get this all together on Monday, going from hospital to hospital, filling out forms and paying fees.  Our flight is at 6 pm Monday night so I hope to have it all completed before 3.

We don't know what to expect from Einhorn, most likely he'll review and agree with my current doctors, and give his blessing to my treatment.  But until we meet with him, we're really not sure.  As it stands now I start chemo on Monday, 3/5, but that is now subject to change depending on Einhorn's opinion.  We have flights back on Wednesday morning, but there is a chance (I suppose) that I would need to stay in Indy for additional appointments.

In other news I somewhat chickened out on shaving my head this weekend.  I cut off most of my hair, it's shorter than it's been in 5 years, but because I was flying I didn't want to look too different from my drivers license photo.  And hell I have another weekend now to complete the job.

But we did cut most of my hair off and it was funny and sad for Julie & I.  We filmed the entire thing on an iphone, it took about 45 minutes.  I've attached two clips that show the fun and easy beginning, and then a clip from near the end when we had a little moment.
PART 1 (About 10 Mins In)

PART 2 (about 38 Mins In)

Speaking of movies, we watched 50/50 last night.  It was a pretty good movie and of course it's about a dude with cancer.  Some of it probably hit home (considering Julie & I were off an on crying throughout) and it had me balling at the end.  No really for the movie really, I had not had a big cry since all this started and I probably needed it.  The movie helped.

When it comes to cancer films I'd put this up with there with Brian's Song and Champions.  Brian's Song is of course famous for being a film that can reliably get men to cry, but if you've not seen Champions it's pretty good.  Again testicular cancer, also based on a true story.  That one was hard for Julie to watch.

Thursday, February 23, 2012

Bald Is Beautiful

At least I hope so.  The last couple of weeks have been very surreal, the last couple of days have been crazy.

After the ct scan (6th month follow up from radiation) on 2/3 showed an abnormality, Jules and I have been worried but tried to be optimistic.  Then I had to have the biopsy on 2/16 which sort of cemented for me the uncomfortable path that lay before me.

I'd never had a biopsy before and it was a lot more uncomfortable than I had imagined.  It was a CT Guided biopsy, so I prepped just as if it were a normal CT scan only I couldn't eat or drink after midnight, and I couldn't take aspirin or anything that might thin my blood.  That morning I had to pick up barium from the Sibley imaging department, then check in at the admissions section of the hospital.  I think I checked in about 7:30.  Around 8 am I drank the barium and shortly thereafter was moved into a room where I had to take all my clothes off, put on an open-in-the-back gown, and was given an IV line with a saline drip.  Jules and I watched a couple of episodes of Psych via the Netflix app on my iphone, before I was wheeled away (a humiliating experience) from the second floor to the imaging room on the first basement level.

From there I had the first CT scan (lying on my back as is normal) to confirm that the abnormality was still there (it was, I'll be calling it a "node" from this point forward) and I had to roll over onto my stomach (exposing my derriere) and had a second scan.  I was wearing glasses and when I rolled over I took them off, and they had Julie come in and get them from me (she was in the waiting room across the hall).  There were three people in the room (four if you count me), the doctor/surgeon, his nurse/assistant, and the CT tech.  The CT tech was doing most of this initial work, giving me breathing instructions for the scans and marking my back with each repeat scan for the location.  Once they had the general trajectory the doctor stuck a needle into my back to administer the first local anesthetic.  It hurt. 

About 30 second later a second injection which hurt a lot less, but was still uncomfortable as I suspect it went in deeper to anesthetize deep down into the location.  I was extremely tense and uncomfortable, and it was about to get a lot worse.  Almost immediately after the second shot they began the biopsy, sticking the needle into my back which hurt like hell.  Obviously not as bad as without the local, but it was really uncomfortable.  It felt like it was the circumference of a straw, but it was probably only slightly larger than a normal shot needle I couldn't see it being on my stomach and all).  Once the needle was part way in, they did another scan to (I assume) guide the needle to the node that was being biopsied.  Three more times the needle went deeper, followed by a scan.  Each time the pain/discomfort was worse.  The doctor was on my left (the node being biopsied was on my left flank) and the nurse was on my right stroking my forearm and trying to coo reassuring words. 

After the fourth push and scan they were in position and took two samples.  I could hear a loud click as the samples were taken, one after the other.  Each time I could feel a sharp cramping in my gut, which still hasn't completely gone away. Before removing the needle the samples were send up to a lap to make sure they were sufficient, and a few minutes later the needle was out and I was bandaged up.  Julie was allowed in to see how I was doing (I was whispering to her "that hurt like hell, it still really hurts).

I had to roll onto my back back onto a gurney and wheeled back to the second floor for recovery.  This time I asked if I could walk instead, but they told me I could not.  It was about 11 am at this point and I'd had nothing to eat or drink since bedtime.  I was starving and thirst, but had to spend two hours in the recovery room before being send home.  The nurses there gave me some ginger ale and juice, a few crackers and finally a lunch bag.  I ate the crackers and part of the lunch, but it was true to the stereotype, terrible food.

Anyway a few episodes of Psych later (and a lot of "I can't believe this is happening again") we were on our way home.  We picked up Bica from daycare on the way, ate a late lunch at home, and napped.  I went to work the following day (Friday) and around noon got the call that the biopsy had tested positive for cancer.  I haven't been back to work since, and may not go back until treatment ends.

All of this week (after a great three day weekend in Philly with Julie & Bica) have been doctors appointments and tests.  You always hear people complain about being poked and prodded, now I know what they mean and it's no small complaint.  I've had my veins poked by so many needles, had to drink so much barium, had shots full of contrast, been run back and forth through radiation imaging machines, carried around a miniature plastic gas can that was collecting my urine for 24 hours, and have even been injected with radioactive glucose.  Today alone I've had an IV port stuck in my arm for hours while I drank a liter of barium, had the afore mentioned radioactive glucose shot into my veins, then spend 35 minutes lying on a bench being imaged from head to toe.  That was immediately followed by CT scan of my chest (shot full of contrast for that one).  After more than 2 hours at the Sibley Hospital imaging services, I was looking forward to my first food and drink of the day (I'd brought a PB&J and a thermos of coffee), but the bus I take home was at the stop so I hopped on (no eating or drinking on the bus).  Just as I got on the doctor called and wanted me to get a pulmonary function test today if possible.  I had Julie call to schedule an appointment while I was on the bus, they could get me in in a couple of hours.  So I took the bus back to the metro, then took the metro to MD.

It was an unseasonably warm day today so I sat outside on a park bench in front of Tiffany's in Friendship heights, put a spaghetti western on my cell phone via that Netflix app, and finally ate my sandwich and drank my coffee.  It was about 1:15.

At 2:30 I had my pulmonary test (breathing) to get a baseline as one of the chemo drugs I'll be taking can have an adverse effect on your lungs.  My lungs looked great, scored just 2% points shy of 100%, the tech said I could stand to lose a good percentage before being bothered by the drugs (which didn't comfort me, actually).

I got back home about 3:30, got a few wiggles and kisses from Bica, and then settled onto the couch with a beer to finish that Western I had started on my phone.  The home phone got me off the couch though when it started ringing, I have to go to the doctor again tomorrow at 11:30 to get the scoop on my chemo treatment which might start on Monday, the following Monday at the latest.

I think I'll be shaving my head this weekend.  I'm going to feel like Ponyboy from the Outsiders.

Saturday, February 18, 2012

The Best Is Yet To Come

The title of this post is my attempt to be positive, which has been hard these last couple of days as  my second follow up scan (6 months after radiation treatment) came back with an abnormality near my left kidney.  A follow up CT guided biopsy of that abnormality on my "left flank" tested positive for cancer, so I'm once again looking at cancer treatment.
The type of cancer I've had, pure seminoma, is (I'm told) the most predicatable and easiest to treat of all cancers.  It follows a set path and responds well to both chemo and radiation.  Which is why when I was first diagnosed in 2010 with testicular cancer I had three options:  radiation, single (but big) chemo dose, or observation (no treatment, frequent ct scans).  I went with that single big dose of chemo which was supposed to take care of any cancer cells that might still be lingering in my body after surgery.

Well we all know how that went, my cancer came back a year later but it came back exactly where it should have if it was going to come back.  I wasn't happy about this, but it wasn't the end of the world.  I knew the cancer could come back, and since it came back where the doctors expected, radiation was still a viable alternative.  I did the weeks of radiation which killed off that cancerous node, and also treated the entire area where the cancer might have gone to next.  Three months later I had a CT scan that showed me as cancer free.

But here we are three months after that first CT scan and the cancer has again come back, but this time in an area where no one would ever think to look for it.  As the doctor told me on the phone pure seminoma statistically never does this, it always follows a set path.

Except when it doesn't.  Radiation is no longer an option as that would just treat this one node, but they have no idea where else the cancer may have gone.  A full on, unpleasant, chemo treatment is now my only option.

We're going to see the Oncologist on Tuesday.  He's a great guy and I really like him, but now I'm no longer sure he'll be the treating physician.  I've now been diagnosed with cancer three times in the last three years, two of them statistically should never have happened (and hell even my getting testicular cancer was statistically low).  So I'm going to ask this doctor on Tuesday for some recommendations for other specialists (Sloan-Kettering, Mayo, etc.  Hell maybe even the Cancer Treatment Center that you always see commercials about).  We now know that my case is not normal, and I don't expect these cancer centers to offer up an easier treatment this time around; I've resigned myself to tough chemo.  But I need someone to look at the big picture, and to give me some realistic expections of the future.  I don't want to hear "we're 99% certain your cured" again.