Thursday, May 29, 2014

How Can This Be?

Jake passed away on May 11, 2014. Mother's Day. Time of death was called at 3:24am, when the hospice nurse came. In reality, it was more like 2:08am. I know because I was holding his hand as he took his last breath.

I know a lot of you are wondering what had happened after his last post, so I wanted to be able to share that with you. We were told to expect extreme fatigue following his last chemo treatment. On the evening of Monday, May 5th, Jake started falling asleep in the middle of sentences. By Tuesday, he couldn't stay awake to eat. When I called our PA, she told me he was experiencing hepatic encephalopathy. His liver was shutting down; the toxins were building up in his blood and were affecting his brain. If the toxins could be flushed out of his body via laxatives, he would improve.

By Wednesday morning, nothing had changed, so the oncologist told me to take him to the ER. Once there, Jake was admitted to the hospital with renal failure. Pretty much all of the liquid in his body was going straight to his abdomen, bypassing his kidneys and draining them dry. We considered dialysis, but were advised that it was really too aggressive a treatment for his condition.

During the next few days, there were lots of tests and procedures. He had his drainage port put in, but had to have two rounds of platelets before that could occur. During this time, he tried hard to be awake for the important discussions, and for his visitors. In the words of one of his closest friends, "Jake collects friends." From the time we arrived at the hospital on Wednesday until he took his last breath, there was always someone by his side.

In every discussion we had with hospital staff, Jake was adamant about his desire to go home. (He hadn't even wanted to be admitted in the first place.) On the morning of Saturday, May 10th, he was discharged from the hospital under hospice care. His blood pressure had been getting gradually lower for several weeks, so due to concerns about him passing out, he went home via hospital transport (aka ambulance).  Over the next 16 hours, he did his best to make conversation with everyone who came to see him, even cracking jokes on several occasions. His eyes still lit up when I walked in the room. Some of the last words he said to me were, "I love you... unabashedly."

At 12:45am, I went to bed, leaving Jake under the watchful eye of several of his cousins. I was sure his life would continue for at least a few more days. I expected him to slip into a coma at some point, as all of his organs continued to shut down and he had denied life-saving measures. At 1:45am, I was awoken by the words, "Jake needs you." I rushed downstairs and held his hand as he finished his journey on this earth. I later found out a most extraordinary story that I have been debating about sharing…

On Monday the 5th, our pastor came to visit with Jake. Jake had confided in him that he was scared about what was next. Jake also told him that if he could find a way to tell us he could hear us on the other side, he would do it. When Jake passed, I was told by his cousin, who is a respiratory therapist, that had it been in a hospital setting, she would have called the time of death when her son went up the stairs to get me. Jake had stopped breathing. As I came down the stairs and he heard my voice, Jake took a huge breath and looked straight into my eyes. I honestly believe he heard my voice from "the other side" and wanted us all to know that he can hear us. He always was a talker; now he has to sit and listen.

My husband was such a courageous fighter. He fought until the very end. He wasn't ready to be finished with chemo, even though his liver was. He wasn't ready to cancel our vacation, even though his body was. He wasn't ready for his life to be over. None of us were. But then, how can one ever really be ready for such finality?

My husband was truly one of the most amazing people I have ever met. We will celebrate his life at an After Party, just as he wanted. I don't have any details yet, mostly because I haven't the heart to plan them.

Life is short. Sometimes unbearably so. Make sure the people you love know that you love them.


Saturday, May 3, 2014

A New Drug, More Bad News and Hope for Comfort

Two nights ago we were eating dinner at the table and Myah looks at me and points out a fact that I've been trying to avoid.  She said, "Dad, your eyes are yellow."  In truth, they are getting a little yellow but aren't yet yolk color yet.  It is a move in the wrong direction however.

So here are the updates from the last treatment...last time you tuned in we were looking at trying a new drug, evaluating different surgeries and making a bunch of decisions.

Well...the good news is, I don't have as many decisions to make.  :)  We had our consultation with the surgeon on Wed of this week.  You know, you never really get used to the look that the Dr gives you when he delivers bad news.  It's sort of sympathy, but it's more uncomfortable silence, knowing that he has another patient waiting in another room.  And then they leave.  BUT....I'm getting ahead of myself.  We discussed all of the surgical options available:

1) Cut me open and pick out all of the abdominal tumors, then fill me with hot chemo and sew me up, hoping that the chemo takes care of what got left behind.  VERDICT - Invasive procedure with a lot of chemo that my liver most likely wouldn't tolerate.  I'm not a good candidate.  Too much risk for too little reward.

2) Same as above but as a laproscopic procedure.  VERDICT - Less invasive but with the same chemo issues at the one above.  I'm not a good candidate.  Too much risk for too little reward.

3) Hepatic Arterial Infusion pump (HAI).  This procedure would put a pump in my abdomen with a direct line to my liver.  I would get 2 week chemo infusions followed by 2 weeks of rest.  VERDICT - I think that you can all see the trend here...the disease in my liver is simply too much at this time to allow the surgeon to accept any risk in this endeavor.  I even asked that if we went home and decided to take the risks would surgery still be is NOT any kind of an option.  Then what are my options?  They really boil down to just one.  Hope this new drug works.  The first time I got drained they took 3 liters, the second time they took 4 liters and this last Thursday they took 5 liters.  Clearly not a trend pattern you'd like to see pretty much anywhere.  I have another treatment on the 16th of May and we will keep an eye on it after that.

A point of good news is that before my next treatment I'm supposed to be fitted with a tap that will let me drain myself vs going in to the cancer center once a week.  That will keep me much more comfortable as I wait for more news.

A point of not so good news is what really drives the reality of all of this home.  As I feel the liquid drain from my gut, my Dr says that we should talk about something that we haven't brought up yet.  If this drug doesn't work and my condition doesn't improve, he would like to start talking about hospice.  I can't tell you how many times I've been hit in the face with something that I've been expecting, but it still came as a complete surprise when the point of impact came.  That's exactly what happened when my Dr said hospice.

So, now all of the preparation that we did when I was diagnosed becomes very relevant.  And there is still so much to do.  One of the most immediate things to do is to get the ubiquitous second opinion, so we've started the appointment process with MD Anderson.  Logistically it will most likely happen in June.  We have a family vacation scheduled to Washington DC at the end of May and it is vitally important for me to share that experience with my daughter. This becomes more of a concern the weaker I become.  I should be able to eat more and have more energy once we get the permanent drainage tap in.  More to come on that.

I'm also starting to plan my afterparty. will be a party.  People should have fun, share stories, eat wings and drink good beer.  I still don't know the details on that...I suppose it depends on how many people would be willing to travel to get there.  If there aren't many then it might be just a week or two after my "transition".  If more want to come, we would have it about a month afterwards to allow people to arrange travel.

Speaking of ceremonies, tonight we had a Lakota/Sioux sage ceremony.  I have never been through one of these and tonight it was in my honor.  I am so humbled that this was done for me.  Whether it is the Creator or God, the prayers are the same and the power of the those prayers is just as magnified.  I definitely felt the divine flow through me and fill me with awe and peace.  I can't put into words how special it was to have a good friend of the family request this for me.

Find some peace tonight.  However you choose to do that.  Find some and then share it with someone you love.