Wednesday, May 16, 2012

Pathology

Well, we got the pathology results back.  And surprise surprise, it is about as bad as it could be.  12 lymph nodes were positive, the tumor returned in a multitude of places in the bladder, it also spread out all the way through the bladder wall at the site of the original large tumor so that my dad was upstaged from T2b to T3, there was residual cancer at the right ureter margin, and, he also happened to have prostate cancer.

Damn.

These results, particularly the 12 positive lymph nodes, mean the cancer is more likely than not swimming freely through my dad's body.  If it hasn't implanted somewhere else already, it very, very likely will sometime in the near future.  However, the surgeon and my dad's other physicians are not ready to give up hope, which is reassuring to some extent.  The next step is to get him enrolled in a clinical trial - frustrating because nothing has been proven to work for this kind of cancer at this point - these trials are just tests to see if something new works - and he only has a 50-50 chance of getting treatment since the trials are placebo-controlled.

So... we will hope to get into a trial, and hope that the cancer never shows up anywhere else.  The surgeon said that even though the right ureter margin was positive for CIS, risk of recurrence in the upper tract is only 2-4%, and if it happens is usually 5-7 years later, so no additional surgical treatment is needed for the ureter (unlike in breast cancer, where if the margins are positive for cancer they just go back in and cut out a larger area around it).

I had a good cry on the phone to Josh about it - he is in Utah for a few more days.  My parents came home from Chicago today, we're all kind of stunned I guess you could say.  I really appreciate all the offers of help and support that are flowing in, but really there is not much that anyone - including me - can do.  It is good to receive little notes of encouragement, and to know people are praying for my dad and for my family.  It is kind of amusing to me that I am supposed to be studying with all of this going on.

One thing that has been odd or interesting for me during all this tumult is that my faith has remained completely unshaken.  I have not questioned God or His role in all this, or grown angry towards Him.  Perhaps that time will come later, if my dad passes, but I have watched several people die, patients whose care I have been involved in, including children and babies.  Upon watching the light of the soul pass out of their eyes as their last breath was breathed, I found no place for anger or doubt in God's plan.  I know 100% that death is a natural end to life, and I believe that it allows us to return to God's presence, that our spirits pass on to some kind of existence that also intertwines with this world.  So I am not angry at God to think that my dad might die.  We are all supposed to die, and though my father's death may come earlier than any of us would hope, I know there is no answer to "why," and I know it would turn me bitter and terribly sad to start walking down that path of questions.  Instead, I have actually found more comfort than usual when I have spent time in reading my scriptures.  I believe that death must come to us all, and that God's role in death is to serve as a great comforter to those left behind when it happens.

Tuesday, May 15, 2012

Cancer


At the request of several friends... this post is all about my dad's cancer and how it has been affecting me.  It’s rather long but it says everything that I’ve been carrying around for several weeks now.

This is what I wrote in my journal in early April, when we first learned that the chemo had not worked and the cancer had spread:


Okay.  We finally got the news we have all been dreading.  The cancer has spread.  We are still learning some of the details but my dad’s prognosis basically just dropped off a cliff.

I feel tired.  Tired thinking of the discussions with doctors ahead, tired when I think of the talking with my family and trying to work out the weird dynamic of such a poor prognosis hanging over the dinner table, tired when I think of the dozens of hours of lecture that I am behind in reviewing, tired when I think about going home to our little apartment and trying to sleep and lying awake wondering what things will be like over the next few months.  I feel tired.  Can I possibly summon the energy to struggle through such devastating information?  It would be so much easier to just not.  I feel tired knowing my dad will work through it all in his head and then not want to talk much about it with anyone including mom, tired thinking how my mom takes so long to make a decision and will ask me whether she should come to which appointments, tired making those decisions for me and everybody else sometimes.  Tired thinking about how 14, 17, and 21-year-old siblings will take it, tired thinking about the long hours of studying for boards and 3rd year rotations ahead of me.  Maybe I can find some hole to crawl into for the next 6 months, just hide under the covers for half a year, and eventually come out and everything will have worked itself out.

I talked with Dean Goldberg today because I needed someone to talk to as soon as I found out, and Josh was at work.  She said one day at a time.  Have no regrets – about time spent with your dad, not about stuff like school.  She said we are flexible, we’ll change your exams around if need be, but you make the decisions you need to make in terms of being with your family.  She said don’t try to be too strong, let your emotions show.  I wonder if I even have any emotions left.  I feel like they’ve been wrung out of me by this crazy stressful second year of medical school, by the drive of pushing myself to excel for the last 18 years of being in school, by sitting in class for 8 hours a day and learning about terrible awful diseases that rip lives and families and people apart and only take 2 PowerPoint slides to cover before we’re on to the next one, then spending 4-5 hours each night trying to learn all the clinical facts and pathology and forgetting about the families and the feelings before it starts over again the next day.

I feel like I don’t really care about anything right now.  Just tired.


Depressing, right?  Well, I made it through.  We had a whirlwind of a time – the doctor we were working with, when he saw the chemo hadn’t worked, said my dad needed “immediate” surgery.  Unfortunately he didn’t have any time open in his OR for almost a month and a half.  We started asking around at other places, and MD Anderson told us if the chemo hadn’t worked and there was now lymph node involvement, then basically we had no hope and should not even attempt surgery; maybe a salvage chemo or hospice care would be more up our alley.  Which threw us for a loop obviously.  But only one other doctor said anything similar, and 5-6 experts in the field all recommended immediate surgery as my dad’s only chance.  And fortunately, a surgeon – one of the very best in the field – in Chicago happened to have a slot open in his OR a week later.  We took it.  So I rushed to finish my final exams – four 3-4-hour exams in a 30-hour period, with 2.5 hours of sleep to go on – and then flew immediately to Chicago 2 hours after I finished.

My husband took me to Dulles airport, dropped me off, and I went down to security.  A cocky-looking TSA guy – you know, one of those guys who might have been cool in high school but is now like 37 and still has slicked-back hair covered in gel – took my boarding pass and looked at it and kinda looked me up and down and said, “What airport are you supposed to be at?”  I just stared at him.  “You’re at the wrong airport, honey.”  “Nope, no, no way, no I’m not, I can’t be.  NO.”  “Yup.”  I tore apart my bag in the middle of the security line looking for my phone to check the email to confirm.  He kept asking me to move out of the way “honey,” but I couldn’t really give a crap at that moment about anyone around me, sorry.  Yup, wrong airport.  He was still holding my boarding pass and kind of laughing so I snatched it out of his hand and ran upstairs to the ticket counter, hoping there was some flight I could get on to Chicago.  Meanwhile calling my husband over and over, but it was a beautiful evening and he probably had the windows down and the radio on, so he didn’t realize I was trying to call till about 45 minutes later.  The girl in front of me in line went up to the counter and I overheard that she had done the EXACT same thing as me!  Same flight and everything!!!  The ticket lady said she couldn’t do anything, so I went up to the girl and said, “Look, I’m on your flight too – want to split a taxi?”  We ran out and got a cab to Reagan airport – about 40 minutes away.  In the cab I was kind of freaking out and she kinda told me to calm down – I (gently) let her know she had NO IDEA what was going on – that I had just taken 4 exams and hadn’t slept and HAD to get to Chicago tonight because my dad was having major cancer surgery in the morning.  She then agreed I needed to make my flight and started urging the cab driver on with me.  She had to check a bag; I had just carry-ons – but somehow we both MADE IT on our flight!!!!!  Gah.  That was one of the most heart-stopping experiences in my life.

The surgery went very well.  It started 2.5 hours late, and then my dad was in recovery till about 11 PM that day, making for a 16-hour day at the hospital for us, but for once in this whole cancer journey something finally didn’t take the worst possible route.  My mom and I spent every day in my dad’s hospital room, retiring at night to a friary nearby – we had somehow found a group of charitable monks who had guest rooms and were able to host us during our crisis and last-minute travel to Chicago.  They are some of the most kind-hearted men I have ever met in my life, ranging in age from 20-something to 85.  I’m pretty sure God placed them there to help us at this time.

The recovery was mostly smooth – my dad was walking the next day after the surgery!  He got one unit of blood transfused, and was on a steady morphine drip that made for quite hilarious conversations.  Mostly consisting of him waking up for 8 seconds at a time, making some angry proclamation about why he was still in this hospital bed, then promptly falling asleep mid-sentence.  He had leg squeezers to help prevent clots, and a breathy-puffer machine he was supposed to breathe deeply into in order to avoid pneumonia.  I’m sure those devices have medical terms of some sort that I am supposed to know.  There were only 2 complications to the recovery – first, once my dad was discharged, the 2 tubes that were left in to drain his neobladder (formed from a loop of intestine, which produces mucus) both clogged with mucus, leaving no escape for the urine.  There was a mad dash to the hospital and a resident was able to get everything unclogged.  The other complication was my dad’s excessive crankiness.  Which of course I totally understand, no one wants to outlive their bladder or have a catheter for 2-3 weeks or undergo a massive surgery – but I think my mom took the brunt of the displaced frustration.  Fortunately she shrugged it off and has been doing an excellent job as caretaker.  Now all we can do is wait for the pathology results to come back.

I am back home in DC, staying at my parents’ house while my parents are in Chicago as my dad continues to recover.  They should be coming home soon.  In the meantime I have been trying to balance the 10 hours a day I am supposed to be studying for boards with the responsibilities of a mother of 3, as I have 3 younger siblings at home.  True, the youngest is 14, so they’re all able to mostly take care of things, but things have been complicated by the abrupt breakdown of my brother’s car, and the absence of my husband as he is in Utah for 10 days for a long-planned family trip.  My schedule mostly consists of waking up at 6 to take my brother to the bus stop for school, trying to study for a couple of hours, driving down to Arlington to feed my cat (who I would bring to my parents’ house if he didn’t get panic attacks whenever we try to move him, to the point that he literally poos himself and hyperventilates to the point that he covers himself in drool, which when combined with the feces makes for a really terrible experience all around) then come home and pick up my brother from the bus, then try to study until someone pops their head in saying they need a ride somewhere, then getting home and realizing I’ve only studied 4 hours today, and trying to convince myself to study a couple more hours till 11 PM, and then waking up at 6 and starting over.  Plus doing laundry, housework, calling my parents daily for updates, trying to get my brother’s car fixed, etc.  Tell you what, I have gained a SERIOUS appreciation for people who attend medical school and also have kids.  I really have no idea how it could be done without outside help.

I am so glad I made it through the last 2 weeks – I was not sure it was going to happen.  Hopefully things will return to more of a normal pace after my parents and husband get home, and I can get back on track with studying for boards.  The outpouring of kindness from my friends and family, as well as from people in my parents’ ward, has been absolutely incredible.  I received more emails and notes of kindness during finals than I could possibly answer, and the support really gave me the strength to tough it out during this crazy, crazy time.  Thank you everyone reading this for all the love you’ve sent me and my family.