Dictated But Not Read

My dad asked me to update his blog. He has been in the ICU for about the past 24 hours, and is about to spend his second night there.  His voice, wit and personality have come through beautifully in his blog posts.  I cannot emulate those qualities, but I hope to at least accurately convey the ideas he shared with me.  If I get some of the ideas wrong, I hope he will soon correct them in a post of his own.

He first asked me to express his deep appreciation for the support he has received from all of you.

He then asked me to share his current status.

Since his last post, his energy had declined.  He was given a week of chemo as planned, but then his cell counts became too low to continue.  The new plan was to take a week off and then restart.  During this time, he was in significant pain (seemingly from the stent, but there was some generalized pain).  There were plans for him to have the stent removed on Tuesday and replaced (if necessary) by a smaller stent.  The plans were worked out late in the week, but given the long weekend the surgery was scheduled for Tuesday. He was given a 72 hour Fentanyl patch for the pain.  My mom changed the patch on Saturday, and a few hours into the second patch, he began to experience shallow, somewhat labored breathing and a drop in alertness.  He also had a slight fever in the just under 100 degree range.

My daughter Eva was sleeping over with my mom and dad on Saturday night.  As he has done frequently since having the problems leading to the stent, he was sleeping downstairs in a chair.  During the early morning hours, after Eva was asleep, my mom heard my dad call for her.  She came downstairs and found my dad on the floor with blood everywhere.  My dad remembers clearly what happened, and told me today that he had tried to walk to the bathroom but fell.  He tried to get up and then fell again, this time hitting his head on the door to the bathroom.  While telling the story, he smiled and said "after the second time, I figured I should ask for help."  The blood was from the cut on his head.  My mom stayed downstairs for the rest of the night, staying awake to keep watch over him.  Thankfully, Eva slept through this and only saw a somewhat cleaned up scene when she awoke.

Eva's mom Margaret is my ex-wife, but over the past few years she has become best friends with my current wife Dana and we have been blessed with a strong co-parenting relationship.  My mom called me in the morning, before Eva awoke, and after briefly speaking with Dana, we called Margaret.  There was a little difficulty reaching her (understandable, she is remarried and has a newborn baby and was probably enjoying the hour or two of sleep her newborn affords her).  After a little delay, she got the message and quickly called.  She got right in the car and picked up Eva.  Eva was well aware that her papa had fallen and was experiencing a turn for the worse, and her mom spent most of the day comforting Eva and crying together with her (Margaret has known my dad for almost 20 years).

I was out of town with Dana and scheduled to come back late Monday.  However, it was Sunday and I was going back and forth by phone with my mom as to whether to return early.  I told her that the only priority was honoring her wishes and my dad's wishes, and doing what would make things easier for them.  She said she did not want me to come back yet, but she would let me know if that changed.  She was holding off on calling Dr. Flam because she did not want to wake him so early on a holiday Sunday.  I strongly encouraged her to just wake him up (if you're reading this, Dr. Flam, thank you for taking the early call).  She did wake him up, but he did not seem to mind.  He said to hold off on going to the hospital and just monitor him for changes.  I asked my mom to call me immediately when anything changed.  I'm afraid I didn't give her quite that much courtesy, though, since I called her a few times just to check in (although to be fair, my cell coverage was spotty so I wanted to make sure she hadn't called and failed to get through).

Some time later that day (probably mid-afternoon, but it is kind of a blur) she called to say she was in the car going to the hospital with my dad and Herb Boro.  Basically my dad's temperature had gone to just shy of 101 degrees, which I am told for patients in my dad's condition is a level indicating possible serious problems (as we learned later, probably sepsis).  I asked whether I should drive home but my mom said I should hold off.  She didn't think things were critical at that point and she said she without a diagnosis of an imminent medical problem, she didn't want me driving home with my wife and two younger daughters at night.  I said OK.

Around dinner time, perhaps a bit later, my mom called saying that my dad was not going to just be admitted, but was going to be sent to either the cardiac ward or the ICU.  His heart rate was ranging between 110 and 130 and his blood pressure was way up and down.  He had also seen his fever rise to 103 degrees.  At this point I was gripped with uncertainty and self-doubt.  I could drive home right away, but if things progressed even linearly, he would be unconscious or worse by the time I got there (it was about a 4 hour drive).  My mom hadn't slept on Saturday night for more than an hour or two, and was heading into a Sunday night without sleep.  My mom said the best thing was for me to rest and return in the morning.  I went with her request and decided to try to sleep and drive in very early on Monday morning.  My thinking was that the best thing I could do was arrive ready to relieve my mom so she could sleep.  If I drove home right away, my mom and I would both be going into Monday with no sleep, and if things continued to worsen, we might both start to have our function impaired by lack of sleep some time in Tuesday's early morning hours.

It was the worst feeling I've ever had going to sleep.  I was going to sleep knowing that my dad might pass away before morning.  I had two dreams that I can recall that night.  In one of them, my dad called to say hi and I stopped him after a few sentences and said "dad, you're ok!".  In the other dream, it was morning and my dad had stabilized.  I woke up well before the alarm and was gripped by a need to know how my dad was.  The phone hadn't gone off during the night, so my worst fears hadn't been realized. I hoped that my dad had stabilized enough that my mom was able to sleep for a few hours.  I didn't want to wake her, so I painfully waited for an hour before calling her.

I know that the portion of the story I just told is entirely unlike the other blog entries -- it is told from my perspective, and focuses on the experience of trying to react when a loved one is hurting.  It is one thing to say that you should expect to make hard choices, have ambiguous feelings about the choices you make, and force yourself to do what you think, on balance, is best for the well being of your loved ones even if it is hard for you.  It is quite another to live the experience.  I laid out my decisions, the reasons for them and the ambiguity because even if I got it wrong or others would have done it differently, I think it is important for people caring for people in my dad's situation know that they aren't alone in making decisions that reflect their best guess, based on limited facts, about the right thing to do.  Had the worst come to pass while I slept, I would surely have felt guilt that I made the wrong decision.  I was lucky, or (I hope) rationally reached the right decision in that I arrived sad but rested and I was able to provide the love and support that my parents both needed after a truly awful night.  Caregivers, you are not alone in repeatedly rethinking the decision you made that you thought 60% likely to be the right one.  Be guided by your love for others rather than your own needs and at least you can tell yourself "I honored the wishes of my loved ones, and took the path I thought was most likely to do right by them."

I jumped a bit ahead in my effort to keep contiguous the portion of the post about the decision to return sufficiently rested to help rather than return 8 hours earlier.  So I'll rewind to Sunday evening.  I had held it together really well, talking my mom through some of decisions she faced, trying to figure out the right thing to do, even packing up so I could leave without delay in the morning.  Dana had been offering to hug me for hours but I just needed to talk with her, and we talked until I'm sure she was well past the point of exhaustion -- but she is an angel and never let on. I was talking to Dana when mid-sentence I said "I need that hug now", she held me in her arms, and I cried.  I wish I was better at crying when I need to, because it really helped.  Dana made it safe to cry and I did.  I realize now how strange it was that my ex-wife was holding my daughter and crying together about my dad probably at the same time as my current wife was holding me and crying together about my dad. Strange, but in a positive way.

While I was driving home, I talked a couple of times with my mom.  She told me of the harrowing night they had.  Essentially, she was up with my dad all night.  They finally got him settled in the ICU and transfused him with 2 units of whole blood, at which point he improved a bit (the platelets they gave him earlier in the process may have helped, but if they did help, they didn't help enough).  They had him on IV antibiotics, and that also helped.  She was exhausted, and neither parent had slept that night.

I learned something else during that drive that completely surprised me:  People don't normally have a copy of their advance medical directive document available.  The doctors had asked if there was an advance medical directive, and in the middle of the night my mom was only able to say "yes, at the lawyer's office".  Indeed, my dad's was at his lawyer's office (along with mine).  We had all made the mistake of not making sure our loved ones had copies of our advance medical directive available.  I don't know why I didn't realize that illnesses don't always strike when law firms are open, and that even keeping a single copy in one person's file cabinet doesn't mean that the person who will need it can get it.  Luckily, the will was done by the same firm where a terrific person, lawyer, and friend works (Ken Price).  I emailed the three lawyers I knew well at that firm, and despite the pretty early hour got a prompt reply from Ken.  Of course (as I should have known after doing that whole law school/bar exam thing), the complication was that my mom was the person named to make medical decisions, so only she could approve the release of the document.  Ken had the document scanned to a PDF and emailed it to my mom.  She forwarded it to me and I printed it when I got home.  Lessons here?  Give copies of your advance medical directive to anybody who might need it, and realize that even if you have terrific, responsive lawyers they might be ethically limited in their ability to rapidly get you a copy.

I got in the car, copy of the advance medical directive in hand, and drove to the hospital.  My mom was home resting and eating a meal.  When I got there, I walked in and held my dad's hand.  It had only been 24 hours since that first call, but it felt like I had spent a month on the trek there.  I didn't let go of his hand for what seemed like an hour (likely about a minute), and in that moment he was my daddy and I was his little boy.  I wished with all my heart for my daddy to be better.  I looked up, told him I love him, and took a seat next to him.

He had beard stubble, was thinner than when I last saw him, but his eyes were alive.  Not just literally alive, but *** alive *** in the way that all humans recognize as the sign that somebody is really there, ready to engage with the world.  His body was suffering, but he was still very much himself.  I suspect I had been breathing for the minutes leading up to that realization, but I felt like like it was the first time I exhaled all day.

We spent hours talking or just sitting with each other.  My mom arrived, and the three of us just talked and enjoyed each other.  As you can guess from his blog entries, my dad doesn't keep that much secret.  My dad wasn't able to drink easily, and his mouth was very dry.  As a result, his voice was crackly and quiet.  He turns to me and says "Gary, I've got something I want to say to you".  My mom kind of looked up and asked him "is this something I should be here for".  He said "no, just Gary".  I thought, "this is like one of those moments in the movies where the patriarch leans over and in a weak but firm voice and shares something of great importance."  My mom walked out and I leaned in to hear every word.  My dad looked in my eyes and said "so here is what I want you to write on my blog...."  He proceeded to lay out his thoughts.  At first I thought that this was one of those funny moments in a really tense setting where you've misunderstood a fundamental thing.  But then it dawned on me that this blog has been an amazing resource to those suffering with similar afflictions, to his family and friends who get to see his wit and learn new things about him with each entry, and to himself in a cathartic way.  So it was in fact a moment of immense importance for us -- he had entrusted me with writing an entry in a document of true importance in his life.  He shared what I wrote below, but (to again take things out of sequence), we did share some intimate thoughts outside of the blog before my mom returned.

So this blog entry is very much dictated but not read.  I listened carefully to what he said, and this is my best shot at conveying it.

He told me that he was very depressed last night, feeling that there wasn't hope for him.  But today he has a ray of hope.  He said his brain function "is not that great right now", but he is more optimistic based on the fact that we don't yet know if the chemo worked, and it may well have worked.  He then laid out two scenarios:

The optimistic scenario:  The chemo worked.  In a few days he finds out that it worked and the stent comes out, he goes home, he has a chance to beat this thing.

The pessimistic scenario:  The chemo didn't work.  In a few days he finds out that it did not work and there is not much hope.

He says that everything is based on whether the chemo worked.  I then asked him whether there was a third scenario, a middle ground where the chemo didn't work, but he feels better for a time.  He doesn't get more chemo, but with pain management he is able to go home and enjoy some quality time before he passes away. He agreed that the middle ground scenario was possible and agreed that I should add it to his blog entry.

As for his current status, his blood pressure is still relatively low (88/50 earlier, but when I left it was around 80/50).  I believe his ability to concentrate was cycling with drops in blood pressure, but that might just have been coincidental (he hasn't slept a reasonable amount in couple of days so there are plenty of reasons he might have trouble concentrating).  They gave him IV steroids just before I left to try to raise his blood pressure.  The risk is a secondary fungal infection, but they said that his blood pressure was just too low and they could control the risk with anti-fungals.

They confirmed that he had sepsis.  Blood drawn yesterday was cultured and showed gram positive cocci in clusters.  They continue to give him antibiotics, although they're going to monitor his renal function since the antibiotics can create renal function issues.

It turns out that the ICU has a rule that between 7:00 (am and pm) and 8:30 (am and pm, respectively), no visitors can be present.  This is to allow the staff to brief each other more effectively during the shift change.  We were sent home at 7:00 pm, and my dad indicated that we should come back in the morning.  I asked the nurse to call me if he thought that my being there overnight would improve the treatment outlook, and he promised he would.  He hasn't called yet, and assuming I don't get a call I'll return to the hospital after the morning shift change.

My dad remains cognitively strong, and the observation he made about his "brain function" being "not that great now", I'm convinced that it is due to difficulty remaining fully awake.  When he does focus in, he's sharp as ever.  His hands shake when he reaches for things.  He is not getting IV nutrition, but he is on a liquid diet and has no desire to eat it.  They probably put him back on IV nutrition tomorrow.  His temperature is more or less normal (perhaps slightly high, like 99.2 or so).  The nurse was laying out the treatment plan for the next few days, which is a signal that at this point the nurse is thinking things are improving.

I hope that my dad is well enough to post for himself soon, but while we wait for that I will do my best to take his dictation.

I know I led off with this, but it is important enough to repeat:  My dad is truly appreciative of all of the support.

He has his iPhone with him and is reading email at times when his concentration is good.  He may not have time or the concentration to reply to emails, but rest assured that they are reaching him.

-- Gary Shuster

Another "The Short of It"

Because I still am not up to writing "The Long Of It"
I have been home since last Wednesday when the Topotican was started, as a continuous drip. I am able to swallow with the stent, albeit not without pain. The pain has been controlled with Vicodin needing less and less, but still needing it at bedtime. I am sleeping better, but not well. At night and at other times as needed, Marinol was prescribed. It is basically synthetic marijuana, supposedly without the psychotropic effects but with the anti nausea properties. So far, it does make me drowsy and does reduce nausea.
Although I am able to eat, I have no desire to do so. I have to force myself to eat food, and I am still on the TPN. I have not had a bowel movement in about a week, but I do pass gas. Sometimes I burp up feculent gas. 
Listening to the Grammies tonight, I notice that my hearing is again deteriorating. I am also noting more neuropathy in my feet. 
I continue to have shortness of breath and coughing while trying to speak.
With that parade of complaints, I am still optimistic that this drug, the Topo will kill enough tumor to allow me a remission, where I can have some snippets of normal life. 
I hope to have the energy to post again, likely Wednesday after I see Dr. Flam.
Goodbye Whitney.
We will always love you.     YouTubeVideo

Too sick to post much

I can't put coherent thoughts together to post. Today, I will see Dr Flam and decide whether to start Topotecan today or delay a few days. The stent is working but I have no desire to eat. Lots of pain, but getting better. Nausea. No desire to eat even though the food goes down. Still on IV nutrition. 

The Short Of It

Last night, I did have a fairly decent nights sleep, for me. At least I was able to sleep in bed, and not in a chair. The IV feeding ran during the night. However, today, the Boost Plus is not going down easily.
I had my visit with Dr. Flam yesterday afternoon. We had conversations with Dr. Nghiem and Dr. Lewis during this visit. Dr. Flam wants me to start chemotherapy again and made a compelling case for it. He wanted me to begin as soon as today and felt that that would open my esophagus so I could begin eating again. However it would take some time for this and I am in too much distress to wait for this. Dr. Nghiem suggested injecting the esophagus tumor with Beta Interferon endoscopically and then giving radiation to the area of 8 Gy. The second mass near the gastrohepatic ligament might also be treated in similar fashion. However, my esophagus has already had 56 Gy and this is getting close to the maximum. We decided to hold that approach for the time being. I did not want to have any more cisplatin as I want to preserve my hearing and my peripheral neuropathy has not improved and at times is quite uncomfortable. 
The plan now is as follows.
Tomorrow, Dr. Lewis will insert a removable stent. Stent Review Article  On Monday I will begin chemotherapy with a drug called Topotecan. Information about Topotecan 
The drug will be administered by continuous infusion for 5 days, and repeated after 2 weeks off. I don't know how many cycles will be used, presumably this depends on the response.
The drug is available to be taken orally. Perhaps after the first cycle, if my swallowing function has improved, I will be able to do that. More on Topotecan 
Nobody discussed the response rate with me, but it seems to be in the 25-40% range, with only rare complete remissions.