Sunday, December 30, 2012

Daddy is Always with Us

Peanut misses his dad like crazy, but doesn't understand where his dad is.  While we've had many conversations about heaven and God, he just can't grasp those abstract concepts.

Dad's in heaven.  Where's heaven?
Heaven is a wonderful place in the sky.  Can we go visit?
God is taking care of daddy now.  Who is God?
God takes cares of us.  No, my daddy takes care of us.
Dad is not sick anymore.  He's all better in heaven.  Can we go pick him up then?

Yes, I realize I don't have a strong religious background, but I try my best.

After having a variety of discussions with Peanut, none of which seemed to satisfy his mind or his heart, I think we finally came up with one that worked (at least for now).

Dad is always with us.  Close your eyes.  Can you see him?  Peanut scrunched his eyes up tight and his whole face squished in concentration.  Suddenly he broke into a big smile, "I can see him!"

Dad is always in your heart.  Think about him.  Can you feel him?  Peanut put his hands over his heart and sighed, "I can feel him."

So now when Peanut gets to missing daddy, he closes his eyes and puts his hands over his heart and he reminds me, "Daddy is always with us."

S.

Friday, December 28, 2012

Delays for Oma

Remember all those folks saying mom (Oma) would hopefully be having surgery in the days following Christmas?  And how I was skeptical and thinking that the days following New Year's might be more realistic?  Well, looks like it may be A LOT of days following New Year's.

The oncologist is still out of town.  We've scheduled an appointment to see him for January 3rd.  It seems as if no one will give us the final pathology results until we see him.

My brother called the OB/GYN oncologist on Wednesday morning like instructed, hoping to get a quick surgery date.  Instead, we got an office appointment for January 9th.  In speaking with him, it sounds like he is delaying things because he is still holding out hope of combining the two surgeries (the ovarian surgery and the pancreatic surgery).

The pancreatic surgeon wanted to see Oma on January 8th, but we then learned that he was the second choice for a surgeon as the first choice was originally out of the country.  My brother called the first choice surgeon and made an appointment for January 15th, but she's on the cancellation list if something comes up sooner.

At this point, we'll be lucky if Oma gets into surgery the third week of January.  Of course, I'm a little jaded, but figure I'd rather set my expectations low and be pleasantly surprised if things happen sooner, than if I set my expectations high and be disappointed if we run into delay after delay.  At least there are appointments made.  We're making progress, slow progress but progress.

Saturday, December 22, 2012

Missing him

Snuggled up in bed last night, Peanut's eyes welled up with tears.  "I miss Daddy."

Me too, Nut.  Me too.

Friday, December 21, 2012

Mom/Oma is Home

Mom/Oma got discharged today and we got her settled in nicely back at home.  We are to call a few different doctor offices come Wednesday and hopefully come up with a plan from there.

In the meantime, I hear there's a big holiday coming up.  (Thanks to the kindness of others, there are actually presents under the tree.  Heck, thanks to the kindness of others, there's actually a tree!)

S.

Thursday, December 20, 2012

Oma's Preliminary Biopsy is Benign!

Mom went for her endoscopic ultrasound today.  The preliminary biopsy is benign!  They took tissue samples from two spots on her pancreas and pathology folks looked at them right then and there.  From what they saw, they were NOT cancerous!  Now, those samples have to grow in the petri dishes or whatever for a few days, and final results won't be back for 3 or 4 days, but this is some pretty great news.  (We actually aren't expecting to hear the final results until after Tuesday, with Christmas and all.)

So, what happens now?  We have no idea.  Obviously, she has this 4 cm THING in her pancreas that shouldn't be there.  Does it come out?  Do they just watch it?  We're not sure.

And then there is still the issue of the mass on her ovary.  We still haven't seen that last doctor, the OB/GYN.  We've begun to question if he is real.  Haha.  We've joked that he's just an imaginary doctor.  They keep telling us that he'll be in to see us.  He's pretty much the only reason mom is still in the hospital.  She'll get released tomorrow no matter what I think and the nurse just said that if we don't see the OB/GYN before she gets released, we can make an appointment to see him in his office.  Uhg.  I'm really hoping he makes an appearance.  That was the whole point of getting admitted ... to get as much of this stuff done as quick as possible and not have to make appointments two months out.

Things are looking a little more manageable than they were two days ago.  We still have things that need to be addressed, but as we tentatively cross the big looming pancreatic cancer off the top of the list, the rest seems like smaller workable chunks.  Right now though, Queen Mom is demanding coffee and pie.  Unless I head to the cafeteria and make a delivery immediately, there will be hell to pay.  Her wish is my command.  At least for the moment.

S.

Edited to add:  The elusive OB/GYN came by at about 7:30 p.m.  Now, to his credit, he's not just a run of the mill OB/GYN, he's an OB/GYN oncologist, and a very busy one at that.  He's not really sure what the mass is on mom's ovary, but it doesn't matter, it needs to come out.  He'd like to take out both ovaries and the mass all at the same time via a laparoscopic procedure.  Then, as part of the procedure, the mass would go through some sort of freezing process and then be examined through a microscope.  They would be able to tell right then and there if it was malignant or benign.  Based on what they found, that would determine if the surgery was over or not.  If it was benign, mom would be all done.  She'd stay in the hospital one or two days and have about a week long recovery period.  If they found cancerous cells though, they would slice her abdomen open and remove lining, lymph nodes and whatever else they needed to.  She'd be in the hospital a week to ten days and her recovery time would be MUCH longer.  There would also be a discussion of potential chemotherapy and/or radiation post-surgery.  He wouldn't know until he got in there though.  The OB/GYN would like to schedule surgery as early as next week.  He also mentioned that he'd like to coordinate with the thoracic/abdominal surgeon to possibly do both surgeries (the ovarian surgery as well as the pancreatic surgery) within the same time period although he and I both realized this is a remote possibility.  We are to call his office on Wednesday to see where things stand.  (I'm guessing that realistically, things won't happen next week, but probably the week after.)  In the meantime, Mom is all set to be released tomorrow.


Wednesday, December 19, 2012

Scans, Scans and More Scans

Last night's CT scan with contrast showed a "possible pancreatic neoplasm" and a "possible ovarian  tumor."  It stated that the 4 cm structure in the pancreas could also represent a "pseudocyst" rather than a mass.    The structure on the ovary measured 3 X 5 X 3 cm.

The oncologist visited with mom bright and early this morning and my brother was present to ask questions and take notes.  The plan to biopsy the pancreas via a fine needle aspiration was scrapped as I guess removing the needle runs the risk of potentially spreading the disease.  Instead, an endoscopic ultrasound will be performed and a biopsy will be collected that way.  A GI doctor would be in to discuss the procedure, which would hopefully take place today or tomorrow.  A thoracic/abdominal surgeon would also be in to discuss potential pancreatic surgery.  And finally, an OB/GYN would be in to discuss the mass on the ovary and how we would go about addressing that issue.  More lab work would be collected, specifically to look at two cancer markers, but that would take several days to get back.  Mom's case could potentially be turned over to the surgeon, depending on how test results come back.  In some cases radiation and chemotherapy are needed before surgery, or sometimes after, or sometimes not at all.  The oncologist is going out of town for two weeks, but has updated his partner about mom's case and so we can move forward if need be before he returns.

The hospitalist also came in and informed us that mom's case had the team of doctors perplexed.  Mom isn't presenting the typical symptoms of someone with pancreatic cancer.  But she isn't presenting the typical symptoms of someone with a "pseudocyst" either.  Mom isn't presenting the typical symptoms of someone with ovarian cancer.  But she isn't presenting the typical symptoms of someone with a cyst on her ovary either.  Her medical history isn't consistent with these diagnoses either.  So, they're all scratching their heads.  There are a lot of potential scenarios and they are going down the list to eliminate things one by one.  It is hard to answer questions about what is going to happen when we are not even sure what we are dealing with.  Because the pancreas seems to be the most serious issue, I think that is why that is where all the attention is focusing on first.  The endoscopic ultrasound was scheduled for today, but because of some miscommunication, mom had already eaten lunch (oops).  Therefore, the procedure will now be conducted tomorrow.

Mom had to do yet another CT scan.  This was a more detailed and localized CT (with and without contrast) specifically of the pancreas.    It indicates that the "hypodense sharply marginated mass of the body of the pancreas" is 4 cm in diameter and does not obstruct the pancreatic duct.  It states it could be a "cystic neoplasm or other cystic lesion."  I'm not really sure how much more information that gave anybody.

The GI doctor came in and reviewed the endoscopic ultrasound procedure.  The information he collects during his procedure will give the surgeon additional information to make necessary surgical decisions.  He will also collect tissue samples for immediate preliminary biopsy review.  The samples will then be sent to pathology, where we will have final pathology results in 3 or 4 days (or probably a bit longer with the Christmas holiday around the corner).

The thoracic/abdominal surgeon also visited with us.  Because there is so little information available about what we are dealing with, we spoke in a lot of hypothetical terms.  In all likelihood, this mass will need to be removed.  It appears to be in a "good" location for removal, being in the middle of the pancreas, although if it's a little more to the right or to the left, that could change things.  The pancreas is a very intense organ with lots of nerves and blood vessels and so surgery is a complicated matter.  Sometimes, chemotherapy and radiation are required pre or post surgery.  He would not be able to make any decisions until he was able to review the endoscopic ultrasound and see the biopsy results.  If mom did in fact require surgery, he didn't anticipate that it would take place until after the first of the year.

Mom is comfortable.  She complains of a burning in her upper stomach, right below where the ribs meet.  She receives pain medication as needed and that seems to control things superbly.  She is definitely not a fan of hospital food and has not missed an opportunity to let people know that.  Other than that, things are good.  Her spirits are good, her attitude is feisty and she's taking things as they come.

Tuesday, December 18, 2012

Seriously?

Today my mom called me complaining of abdominal pain.  Bad abdominal pain.  I suggested she go to the Emergency Room, but she came up with every excuse in the book.  What is it with people who don't want to get help?  Gosh darn stubborn people in my life!  I made a quick trip to her house and after a little bit of tough love, we were in the car and on our way.

Would you believe me if I told you we got the exact same room in the Emergency Room that E. was last in?  What are the odds of THAT???  Oh yes, same nurse and everything.  Blood work, a urine sample, a CT scan.  My brother arrived and we settled in for what we figured would be a long wait.  It wasn't long at all when the doctor returned and announced that the CT showed a 3.5 cm mass in her pancreas.  Are you frickin' kidding me?  If this wasn't happening right in front of me, I'm not sure I'd believe it.

Long story, short ... she was admitted to the hospital to get a jump start on things.  A CT with contrast was completed tonight of the chest and abdomen.  A biopsy will be done in the morning.  A call was put in to the oncologist.  With the holidays and vacations undoubtedly on the books, I'm sure we'll be running into delays after delays.  I'm crossing my fingers we can get some sort of plan in place sooner rather than later.  I function better with a plan.  It makes me a little less crazy.

(Yes, she's on the oncology floor.  Yes, I requested that she not be placed in E's same room.  Yes, we saw lots of familiar nurses.  Yes, it was very difficult.  Yes, we continue on.)

S.

Wednesday, December 12, 2012

Obituary


Earl Horton, Jr., 54, died peacefully at home on December 11, 2012 with his family by his side.  Earl was diagnosed with Stage IV Esophageal Cancer in 2009, but gave that beast a run for its money, beating it back, not once but twice even after it has spread to his brain.  Earl’s body gave out way before his spirit.
Earl was born on October 24, 1958 in Winnemucca, Nevada, where he spent his childhood and graduated from high school.  He attended the University of Nevada, Reno graduating with a Bachelor’s Degree in Psychology in 1991 and a Master’s in Social Work in 1994.  During his college years and even after, Earl was very involved in the ATO fraternity, and established meaningful and long-lasting friendships with his fraternity brothers.  

Earl worked for Washoe County Juvenile Services for thirty years in a variety of capacities, from work crew to detention to a probation officer.  He influenced and made a difference to many youth and families.  Earl enjoyed camping, fishing and a cold beer.  He was a loud and spirited fan of the Nevada Wolfpack, the Los Angeles Dodgers and the Minnesota Vikings.  

Earl’s biggest joys and proudest accomplishments were his children, Morgan Horton (age 19), Katie Horton (age 17) and Earl Horton, III, “Peanut” (age 3) who will carry on his legacy.  He is also survived by his proud father, Earl Horton Sr., his beloved sister, Joan Horton, and his three nephews, Jeffrey Horton, Joseph Horton and Julius Horton.  

He will be forever cherished and missed by his wife Sandy Tedsen Hellman-Horton as well as his step-children, Keegan Hellman (17), Luke Hellman (16), Chase Hellman (14), Gage Hellman (13), T.J. Hellman (12), Seth Hellman (12) and Ty Hellman (12).  Additionally, he is survived by his aunts Margaret Horton-Davis and Barbara Mills, numerous cousins, and his in-law families, the Scrivens and the Tedsens.  He was preceded in death by his uncle Richard Horton, his cousin John Harris and his mother Hilda George.

As per Earl’s wishes, there will be no formal services.  There will be an informal gathering of family and friends at his home on Saturday, December 15th from 1:00 p.m. to 5:00 p.m. to enjoy drinks and food, and share memories and stories.  

In lieu of flowers, Earl’s ATO brothers have set up an account to assist the family at Wells Fargo.  The Earl Horton Donation Fund, C/O Wells Fargo Bank, 1200 Disc Drive, Sparks, Nevada 89436 (Account #1016982298)

Tuesday, December 11, 2012

Goodbye E.

A man of great honor, integrity and courage left this Earth this afternoon.  While his family and friends will all miss him immensely, I think I can speak for all of us when I say we are all relieved that he is now pain-free and enjoying a beer with his fishing pole in hand.

As per E.'s wishes, there will be no formal services.  We will be gathering at our home for an informal open house on Saturday, December 15th from 1:00 p.m. to 5:00 p.m.  Please join us for food and drinks, and to share memories and stories of this man we all loved so much.

Sunday, December 9, 2012

Decline

E. had several visitors on Saturday and was able to hold intermittent conversations.  He recognized folks and reminisced a bit about old college days.  The stories shared made me chuckle.  There is no way I can do them justice.  Streaking down Virginia Street?  Football games in the Bay area?  ATO stories galore?  Tales of old time Wittenberg?  I love the stories.  I have heard so many of them from E.'s perspective, but to hear them from other people just made me smile.  These are stories that Peanut needs to hear.  He needs to know who his dad was and how this man came to be.  I sincerely hope that people will take the time to share their thoughts and memories on paper, so I can save them for Peanut when he is older.

Saturday night was rough.  E. grew more and more confused.  He was restless and agitated.  He was hallucinating.  He mumbled incoherently throughout the night.  Pain medication needs to be administered more and more often.  Sunday morning, he woke up agitated and nauseous.  Despite giving him anti-nausea medication, he threw up on himself and on his bedding.  Getting him and his bedding changed was a three-man job.  E. is no longer mobile.  He cannot stand without assistance.  Even then, it is only for mere minutes.  There is no walking, even with his walker.  He is not sitting in the recliner next to his bed.  He is in his bed full-time.  He opens his eyes occasionally and recognizes family members, but is no longer having conversations.  He frequently mumbles random statements that do not make sense.  He is also seeing things.  He is reaching for things that are not there.  More often than not, he does not respond.  The hospice nurse drained 1 liter of fluid from his abdomen yesterday.  I drained 2 liters today.  His blood pressure is dropping and his pulse is going up.  How quickly he declined from yesterday to today is mind-boggling.  There is lots of hand-holding and arm-rubbing, or just quietly sitting beside him.  He is not resisting pain medication and for that we are thankful.  We are doing our best to make sure he is comfortable and to make sure he knows he is loved.

Friday, December 7, 2012

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."



Thursday, December 6, 2012

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.

Tuesday, December 4, 2012

We are Home

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

Monday, December 3, 2012

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.

Sunday, December 2, 2012

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.

Saturday, December 1, 2012

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!!!