Our Story

Some people are wondering about mine and E.'s "story," so I figured I might as well share it for those of you that aren't familiar.

E. and I met way back in about 1989 or 1990 or so, when I had to do some hours for a criminal justice class at the juvenile hall where he was a supervisor.  I liked it so much, I eventually became a regular on-call detention staff, as well as an intern with the juvenile probation department.  Turns out, we also wound up having several classes together at UNR.  When E. got married, I even attended his wedding!

As graduation approached in 1993, I desperately wanted a job as a Juvenile Probation Officer, so when I was hired in rural Nevada, I found myself moving across the state.  E. wound up transferring from detention to probation as well and in 1995, we attended the same P.O.S.T. Academy (8 weeks of policy academy hell).  We kept in touch sporadically throughout the years, mostly through trainings and transports.

I figured I'd be in Elko forever.  I had a job I loved as a Juvenile Probation Officer.  My husband rocked his job as a Flight Paramedic.  We adopted our daughter and our seven sons.  We were living the good life.  Then, in 2004, life took a traumatic turn.  My husband was killed in a helicopter crash (the air medical crew was transporting a critically ill infant and her mother from Battle Mountain to Reno).  I subsequently became a stay-at-home-mom.

A few years later, my boys and I returned to the big city of Reno.  I just so happened to run into E., who was recently divorced.  We went to lunch.  Later, we went to dinner.  And as they say, the rest is history.  It was my boys and I (then ages 12, 11, 9, 8, 7, 7, and 7 ... my daughter had reached adulthood and was independent) and his girls and him (then ages 14 and 12).  But wait, we weren't done.  Our little surprise Peanut was born in March of 2009.  A few weeks before he was born, E. was diagnosed with Stage IV Esophageal Cancer, which is when this blog first started.

I know I've shared this pictured before, but here is our beautiful family (from 2011):

The girls are now 19 and 17.  The boys are now 17, 16, 14, 13, 12, 12, and 12.  And Peanut is 3.

This is where the magic wand is supposed to click overhead and we all get to "live happily ever after."

Days

I think a lot of people are wondering what our days are looking like.

No, E. is not incoherent and sleeping the day away.  No, E. is not sitting on the couch entertaining guests and having jovial conversations.

Let's look at today as a typical day.  E. awoke about 7:30.  He awoke with immediate nausea and pain.  I helped him get out of his hospital bed and using his walker, he slowly made his way to the bathroom (the master bathroom connected to the master bedroom).  I walked behind him with my hands on his hips to steady him.  Instead of heading to the toilet, he went straight to the sink, where he started throwing up.  When it looked like he was done, I had a Zofran (anti-nausea medication) ready.  I had him sit down and wait for things to settle.  It did no good.  He was throwing up again a few minutes later.  We eventually made our way to the toilet, but sitting and standing is extremely painful.  He wanted to shower, but since I didn't know the protocol with the new drain tube, I put a call into the Hospice service.  Because it was going to be a few minutes before a nurse called me back, I gave him a sponge bath in the meantime.  His pain level was obviously rising, so I gave him an Oxycodone (probably a poor choice with the established nausea).  Minutes later, he was throwing up again.  I put some lotion on his extremely dry skin, and got him dressed and back into bed, where he was shivering with cold, pain and nausea.  He managed to drink a few sips of water.

Typically, we have a routine of morning meds.  There are a variety of pills, as well as a couple of liquid medications E. takes.  I must also check his blood sugar and give him his insulin.  This morning though, we skipped his entire morning medication routine because he was feeling that poorly.  He knew that nothing would stay down.  He didn't feel like eating anything so we didn't attempt any food.  One of the girls stayed with him while I ran Peanut to preschool.

He dozed on and off, but awoke now and again.  We discussed funny things like random stuff Peanut blurts out these days and not-so-funny things like bank accounts and house maintenance.  I read him messages and texts from friends and relayed phone calls I have received.  He talked about people he still needed to chat with.  He made a few phone calls throughout the day.  Please don't take it personal if you don't get a phone call.  It is totally hit and miss.  It's a timing thing.  When some people call, it just so happens that they catch him at the "right" time that he's not in pain, he's not nauseous, he's not asleep, and he's in the right mood.  The emotional stuff is as painful, if not more so, than the physical stuff.

For lunch, he had a craving for Speedy Burrito, so off the girls ran.  In the meantime, the Hospice nurse arrived.  His blood pressure and oxygen saturation rate still looked good.  He's developing some thrush in his mouth, so they'll send over a prescription for that.  They also delivered a "rescue kit" of prescriptions yesterday to help deal with nausea, pain and constipation, so the nurse went over all of them with us.  It is really reassuring to know how concerned they are about his comfort.  We all agreed that E. needs to start the day with an anti-nausea med and a pain med before he even gets out of bed.  That will hopefully prevent a morning like we had today.  I received instructions on how to cover his drain tube (Pleurx catheter is the proper name) so E. can shower if he wants to now.  The girls returned with E.'s burrito and taco, and E. did manage to take a few bites of the burrito.  Another Hospice nurse will come tomorrow to drain the fluid off his abdomen and teach me how.  A Hospice social worker will also be visiting tomorrow.

E. took an afternoon nap (as did I, as I have some sort of crud), and had a few emotional phone calls and other moments.  He had the t.v. on, but I'm not sure he actively watched any of it.  By 6:00, he is pretty much done for the day.  I give him his evening meds, check his blood sugar and give him his insulin.  I also changed out his pain patch tonight.  He's been sleeping pretty well through the night (I hope I didn't just jinx us), typically only waking once or twice if at all.

Today, he spent the whole day in bed, but yesterday, he spent a good chunk of the day, in the recliner next to the bed.  He doesn't leave the bedroom.  Every once in awhile, he talks of wanting to go somewhere or do something, but while his mind wants to, his body does not cooperate.  While he can walk pretty good with his walker, he cannot get out of bed on his own and I feel more comfortable if someone is walking beside him in case he stumbles.  Sometimes he asks the same questions repeatedly, but for the most part, he is still very coherent.  I am told that with the cancer spread in the liver, there may be increased mental confusion.

Our days are spent at home.  The other boys pop their heads in and out.  For as little as we do, it is draining.  It is hard to explain.  I have no idea why I am so tired.  I had previously said that watching your loved one in pain is agonizing.  I was talking about physical pain.  But watching them in emotional pain is just as agonizing.  It rips my heart out.  And there is nothing I can do about it.

We are Home

That is all.  That is all that matters right now.

Meals

Many people have offered to bring meals during these next several weeks, which would would be greatly appreciated.  The only kink is that I think we may wind up with several meals on random days and I would hate for anything to go to waste.  Our dear friend Lauren has offered (or actually, been nominated) to organize a meal calendar of some sort.  So, if you'd like to bring us something (thank you!), please call or text Lauren at 250-7700.

"Love and kindness are never wasted.  They always make a difference."

Edited to add:

Meal Calendar Link

Hospice

We spoke at length to E.'s oncologist this morning.  The cancer is an ugly beast.  It has taken over his body.  It has taken his strength.  It has taken his appetite.  He isn't strong enough to tolerate chemotherapy.  Even if he were, the cancer would probably be stronger than the chemo.  So, we've made the decision to go home on hospice and try to make these last days good ones.

Please respect that this is his decision.  It was not a decision that was made easily.  We are educated people who have a team of trusted doctors that we respect and consult with, both here locally and at MD Anderson in Texas.  When he was initially diagnosed in February of 2009, we were told that his life expectancy was "less than 2 years."  He has far surpassed that.  Not only did he far surpass that, but he far surpassed that with some darn good years.  We made some great memories.  We need to remember that.

Although we know that people mean well, we don't need to hear phrases like "Keep fighting."  There is nothing left to fight.  Please don't tell us about your Great Aunt Frieda who was told she only had months to live, but started on a raw food diet and ate seeds from a chia pet from Mozambique and is now doing great five years later.  Or your neighbor's friend's sister who went to that clinic in Mexico for a herbal treatment and is now "cured."  Really.  Don't do it.

This is not about E. giving up.  This is about E. accepting the hand of cards that he was dealt.  Like he so eloquently said, he is at peace with his life.  He is a good man, a man of high morals and great integrity and he knows that.  He worries about his family and his children.  He worries that Peanut will not know who he was.  But, as for his life, he is good with that.  That is a goal we should all strive for.

We're hoping to be released from the hospital today or tomorrow.  Because of where the cancer is, it is anticipated that his abdomen will fill with fluid again.  In an effort to prevent us from having to go back and forth to the hospital, they are going to surgically insert a drainage tube (so the fluid can just constantly drain into a bag).  Once that happens, then he can be discharged.  It sounds like the cancer of pancreas is notoriously painful, so hospice will have to stay on top of the pain management.  Those of you that know E., can imagine that he's already voiced his opinion about that.  He does NOT want to spend his last days "drugged up."

His time is limited.  Very limited (the doctor estimated he has two to four weeks left).  He is tired.  He wants to rest and enjoy the little time he has left with his family.  At the risk of offending friends, he doesn't want visitors at this time.  Feel free to send cards or email or text any messages you might want relayed.  Please, please keep us in your thoughts and prayers during this holiday season.  We are losing a man that means the world to us.

Strange Night

When I left E. last night, he was peacefully sleeping.  I expected him to get a great night's sleep.  So, I was shocked this morning when I came in and he had tall tales of a wild night of chaos.  Initially I was appalled at the mistreatment he suffered, but as the stories continued, I realized that things weren't lining up.  Clearly, he had been dreaming.  Or possibly hallucinating?  I tracked the nurse down and voiced my concerns.  Was he just super sensitive to the pain medication?  Was cancer growing in his brain again?  We obviously needed to discuss this with the doctor.

By the time the doctor arrived in the afternoon, E. was in need of pain medication.  The nurse and I discussed E.'s crazy night with her.  She reviewed his meds and decided the meds couldn't be the culprit.  Even though his pain patch was increased, it was still only at 25 mcg (and some people are on 400 mcg!) and he only received .5 of the Dilaudid.  She tracked down the MRI of the brain and those results were stable.  So, by process of elimination, they decided E. was "sun-downing."  I've never heard of this, but as they explained it to me, it's a condition that often occurs in dementia patients, but also occurs in patients with chronic illness.  What happens is when the sun goes, a different person basically comes out (kinda like a werewolf, I asked?).  Patients can become confused, violent, and delusional.  They often hallucinate.  This rarely occurs when they are at home (where they are comfortable and secure),  but rather occurs in strange environments (like the hospital).  There is no predictability as to when someone will "sun-down," as it is totally random, but does occur more often when someone is on heavy narcotics (E. is not on heavy narcotics, so that is not the case with him).  So weird.

We did get the results back from E.'s PET/CT scan.  They are not good.

There is a 10 mm metastatic left hilar lymph node.

There are five or six 6-7 cm metastases in the liver.

There is a 3 cm mass in the pancreas that is either a metastasis or a primary tumor.

There are bilateral small pleural effusions.

There is a large amount of ascites.

So, in layman's terms, the cancer has spread to the lymph nodes, the liver and the pancreas.  There is a lot of fluid in the abdomen (which they drained).  There is also some fluid in the lungs.  Not good.  Not good at all.

Emotional Day

It's been a very emotional day.  Aside from the physical aspect of this journey, the emotional side takes its toll as well.  There are so many things to work through.  I don't feel comfortable sharing those private moments, but trust me when I say they are heartbreaking.  The kind of stuff that rips your heart out and makes it so you can't even breathe.  In spite of how hard it all is, the tremendous feeling of love still overshadows everything else.  Love gets us through.

E.'s pain level sky rocketed today.  He'd be fine for about fifteen minutes or so and then it would just go through the roof.  After we watched this for awhile, we could take it no more and I told him I was going to find the nurse to get him more pain medication and he wasn't going to argue about it.  About that time, the doctor came in and saw how much pain he was in as well.  His Fentanyl pain patch was increased from 12 mcg to 25 mcg.  He was also given a shot of Dilaudid.  It helped a ton!

E. was then taken to go get the fluid drained from his abdomen.  They stuck a large needle into his side and began sucking.  Any guesses on how much they sucked out?  How about 5 liters?  Yes, FIVE LITERS!  Can you imagine?  That's 2 1/2 of of those two liter bottles of Coke!  And all that liquid was sitting on his organs.  No wonder it was making it a little difficult for him to breathe.  They estimated that liquid weighed at least ten pounds.  Wowza.  His oxygen saturation rate immediately improved.  So, having the liquid drained combined with the pain meds on board means he's in the least amount of pain he's been in in weeks.  Yay!!!