Things that Go Bump in the Night

 My sister Jennifer and some of her kids drove in from North Platte on Thursday evening just as we were getting the folks tucked into bed. The next day, they came over bringing the makings of a Root Beer Float party and Dad enjoyed seeing them all. 

My nephew Casey stayed Friday night with the folks and helped Dad go to the bathroom in the middle of the night. Once he had to catch him to keep him from falling. Mom was so thankful to have Casey available. 

Brian and I were with the folks for most of the day yesterday and Jenn and Casey and her daughter Mariah stayed the night last night. They insisted we not worry about getting supper for them. I already had fish for dad and Southwestern Chicken for mom in the fridge so that was easy. And Jenn and her kids tucked them into bed for what we all prayed would be a peaceful night.

I selfishly went home, ate a light supper of celery sticks and dip, took a long hot shower and was in bed by 8PM. 

My phone was charging in the living room and I slept right through its little dings and chirps.

When I woke at 5AM, I found Jenn's 3:04AM text and missed call:

Dad had another fall. I've contacted hospice. They will be sending a nurse over to start comfort care. We currently have EMS here. He does not want to go to the hospital. I will keep you updated on his status.

At 5:16AM she responded to my text with:

The folks are resting well now that the hospice nurse has been here. I've already spoken with her. She'll be back tomorrow. We are keeping Dad as comfortable as possible with the medication.

He did hit his head in the bathroom when he fell. He told Casey he hurts all over.

He's sleeping now though. I love you sissy. 

Mariah is also here.

 A text isn't enough sometimes though and Jenn called me when I texted we'd be right over. She said we should wait until later since the folks were resting. Casey was feeling miserable that he hadn't been able to stop this fall like he had the night before. But this was not his fault. Dad has refused to wear the safety belt that might have made it easier for Casey to catch him. Evidently Dad was up almost every hour with urgency but not much production, so he was exhausted by the effort of standing so much. Mariah supervised the medication administration. It's very reassuring to have an RN in the family. 

It's almost 7 AM now. I'll gather up what I need to make a big frittata for breakfast for them all and head over there soon. Dad has been unable to put his teeth in for a few days, but egg with very soft veggies is something he can still handle. And he still seriously likes his ice cream!  

Our hearts are broken but our bodies must go on. I don't want Dad to ever feel alone as he makes the final leg of this journey. And we want to ease Mom's pain and worry as much as we can. 

Which means we've probably spent the last night in our own bed for a while...

Feeling Like a Traitor

 

Dr. Rammahan and Dr. Kim left us with a partially open door. It was the one week radiology treatment. It might give Dad a little more time. At first, it seemed Dad wanted to go ahead with it. He loves Jesus and knows he's bound for heaven, but he's not in a hurry to leave us 

And we can't bear to let him go.  

However, there are some dangers inherent in radiation. Here is the warning from a cancer center website:

When radiation therapy is directed at a tumor, the powerful beams can damage surrounding healthy cells. This can cause side effects. Patients experience fatigue, radiation dermatitis (red, irritated, swollen or blistered skin), hair loss and low blood counts. Specifically for patients going through radiation therapy for glioblastoma, they may experience headaches, nausea, vomiting, hearing loss, seizures and trouble with memory or speech. 

I spoke to my GP at church and he confirmed it would make Dad much weaker. Dad's home health nurse said she'd seen patients in Dad's situation experience the list from hell's menu of torments in the last sentence. "It may give him a little more time, but it's not good time," she said. "It's not a good trade."

I want to honor my father and follow his wishes.  He is still aware of his situation, but each day he slips away a little more. It became obvious that he can no longer make that decision. So when his GP, Dr. Morrison, recommended hospice when we were at his appointment on Monday, I didn't mention the possible radiation. 

And neither did Dad.

Today, the hospice people came and explained their program. I believe they will help us keep Dad as comfortable and safe as possible. They will provide medical equipment to help care for him, a shower chair and bedside commode we can fit over his stool so he has arms to push on when he's ready to stand. Once he realized it doesn't mean he'll see less of us, he seemed on board with it and really liked the chaplain who came.  

At first Dad started to sign the forms to start the program, but then seemed to become confused with so many people in the room and several different conversations going on at once. He initialed RLT in his beautiful "Palmer-method" script and then couldn't finish. So since I have Dad's Durable Power of Attorney, it fell to me to sign all the documents. 

Oh, God! I never thought I'd have to sign a DNR for my Dad. I know it's his wish because he has an Advance Directive, but it still felt like such a betrayal. I don't dare let loose and wail like I want to for fear I'll never stop.

The one bright spot of the day was when Shannon, the RN, and Mary. the Nurse Practitioner, told us it was obvious Dad has been well cared for. They'll help us along the way as his needs change with advice, support, equipment and training. 

They promised to return tomorrow in case we thought of any more questions. 

We'll eat an early supper and then go check on the folks to make sure everything's okay. Tonight we have choir at 7. I'm partly looking forward to it and partly dreading it because all our friends will want to know how Dad is. 

It's so hard to talk about. 

The Unraveling Relativity of Time

“The Road goes ever on and on

Down from the door where it began.

Now far ahead the Road has gone,

And I must follow, if I can..."

J.R.R. Tolkien

I've read the Hobbit and the Ring Trilogy a couple of times--first to figure out why Brian liked them so much and then later for Tolkien's beauty of language. But each time, they still seemed like "trudging books." Sometimes it seemed nothing was happening. At others, the action zipped by in a blur. So it is with our sojourn with Dad's battle with glioblasoma.

The days are beginning to run together. We go over early so Brian can help him dress and take care of his personal needs. I make breakfast as much as Mom will let me. She has her plans and likes to keep to them as much as possible. I try to bring a lunch and supper they both will enjoy, taking Mom's needs for low carbs and Dad's food preferences. Every other day, they have a bath or a shower. Brian has rigged a second walker so Dad has something solid to hold onto in the shower. Still, it's a dicey business because it's hard to say when his legs may become too tired to support his weight. We watch Jeopardy or football with them. Dad plays with his lift chair trying to get comfortable. We tuck them in at night, making sure their cpaps are working properly and the night starts well. Dad still gets up multiple times a night and mom's so sleep deprived it's a wonder she's not lost her mind. Our routine has slowed to match Dad's pace. 

But even routine is hard to come by when new deficits in cognition and physical ability seem to appear daily. Yesterday, we could never get him to put his teeth in, no matter who tried to help him. I shredded the meat in his Mediterranean Chicken for lunch and Mom cut up the spaghetti Linda made and froze for him into tiny little pieces. 

And yet there are moments of joy. 

I stayed yesterday instead of going to church and watched a couple Dr. Jeremiah sermons with them. One was about the spiritual bodies God is preparing for us and the joys of being with our Savior. Dad was very happy about the promise of a brand-spanking new body that will never get weak or sick or grow old.   

The Chiefs won last night which made him happy even though we weren't able to watch it here. (Greedy NBC! Shame on you for putting the play off games behind a paywall. We tried to get the game through Peacock, but the folks' TV wouldn't accept the log in.) 

Brian and Dad both enjoyed their cherry pie and ice cream after lunch.  I continue to bless God for giving me such a wonderful, loving and supportive man to be my husband. He's showing such patience, grace and love to my parents. 

Today we'll head over to the folks at 8AM to get Dad ready for his appointment with Dr. Morrison, his GP. We got ice and snow last night, so it will be treacherous going but we still have the wheel chairs we rented for the folks to use on the trip to STL. Those need to be returned on Friday, but they'll come in handy now. 

Time to go....

Dr. Kim & Dr. Rammohan

 "Is He (meaning Alsan, the Christ figure in Narnia) quite safe?"

"Of course, He isn't safe, but He's good. He's not a tame lion."

~from The Narnia Chronicles by C.S. Lewis

Today was appointment day with Dr. Kim at the Siteman Brain Surgery Clinic. For those of you who watched Dr. Kim's video on the Barnes website, he is exactly as he seems. He took his time with dad, talked to him, got his story. He was watching the family dynamics and it was clear he'd spent time studying dad's records and the now 6 week old MRI. 

Then he said the words we'd both expected and dreaded. With all his experience, Dr. Kim is convinced Dad is battling an aggressive glioblastoma. He didn't recommend any type of surgery due to dad's age and condition. He said it was very likely if they tried, Dad would not wake from the anesthesia. Even the biopsy carried some of the same risk and he didn't want to put him through it.  His own father is a couple of years younger than dad and he would recommend the same for him if he were in this condition. He estimated dad's life expectancy to be 3-6 months. 

However, he arranged for Dad to be seen right away by Dr. Rammohan, a cancer radiologist. There is a course of treatment that lasts 5 days which might buy dad a couple months more time. The treatment can be given in West Plains, in conjunction with the Barnes doctor's recommendations. His nurse Michelle will contact OMC tomorrow and track down the correct department and physician to administer the treatment.

Dr. Rammohan did even more with dad, giving him a few neurological tests and seeing how well he was able to move his legs. In addition to discussing the week of radiation, he recommended hospice as a way Dad can remain at home and mom can get some of the help she needs. There is, however, a catch. In order to go on hospice Dad needs to give up seeking treatment for his underlying disease. He can still be treated for his other issues--high blood pressure for example--but nothing more to address the glioblastoma. Please pray that the radiation treatment can be scheduled as quickly as possible and Dad transferred to hospice care because Mom is at the end of her tether.

If we pay out of pocket for a home health nurse, it's $36 an hour. For 24/7 care, that's over $6000 a week. Even just 4 hours a day to help with dressing and bathing is over $1000. Brian and I have been trying to help, but Dad will only allow us to do so much and we can't be there 24/7. However, we will begin doing morning and evening dressing and undressing in addition to the meals and PT we've been helping with. 

When we returned to the hotel, we told Ron & Doris the doctor's recommendations, and all went to a late dinner with them. Dad picked up the check.

We got the folks tucked in around 9:30PM

This was a difficult day. Dad was so hopeful Dr. Kim could cut the bastard out. (My words, not his) But his first impulse on hearing their news was to praise God and share his faith with both the doctors.

Please God, grant that I can face my own end with such an attitude.

"The Lord is good, a strong refuge when trouble comes. He is close to those who trust in him."

 Nahum 1:7

Going to St. Louis

 "Worry does not empty tomorrow of sorrow, but it empties today of strength." ~ Corrie Ten Boom

Jan. 8, 2024--We went over to the folks at about 8:30 to help them get around. Mariah had come by earlier and brought Dad a beautiful cross necklace to wear. He loves it! We'd been watching the weather for some time and knew rain/snow mix was heading our way so the earlier we could leave the better. 

Unfortunately, one of the symptoms of a glioblastoma is a loss of the sense of passage of time. Dad was not yet dressed and cannot be hurried. He also resists help because he wants to do as much for himself as possible. This is so admirable and I want to help him retain as much personal dignity as he can. But he is highly distractable and may try to repeat tasks. Brian packed the van and the folks had breakfast. We were on the road by 10:30. 

Dad traveled very well. He was warm and toasty with a blanket on his lap and the heated seat in the van. He's not able to speak in a normal voice, but was interested in and added to the conversation with whispers, winks, thumbs up and nods. There is more than one way to communicate. He was also able to use the gas station rest room without trouble, something mom had been fretting over. 

The Double Tree in STL is attached to the Siteman Cancer Clinic, a division of Barnes Jewish. The hospital is a monumental campus of buildings, but we will not have to wander far from the hotel. It is attached to Siteman by an enclosed walkway on the third floor. 

Ron and Doris were already here when we arrived. After getting settled into our rooms, we went to the adjoining Applebee's for lunch/supper. It was good to visit with them and feel semi-normal. 

  More as soon as we know it...

"Is anything too hard for the LORD?"~ Genesis 18:14

A Brief History of Dad's Battle with Glioblastoma

 "I come to the peace of wild things, who do not tax their lives with forethought of grief. I come into the presence of still water." ~ Wendell Berry

It has occurred to me that those of you who are not blessed to live close to my mom and dad, who aren't able to walk this path with them, might want to know what has happened and what is happening. Each day I'll try to post a picture and an account of our small doings. 

But this post is catch-up--a recounting of what has happened since...

November 21, 2023--Dad took a fall. He went down face first into the piano leg and suffered a head injury. We took him to the ER and, bless them, they got him in pretty speedily. I truly was expecting to hear that he'd had a mild stroke or suffered a TIA since he'd experienced those a couple of times before. But after a CT scan, Dr. Horstman informed us that the scan revealed a 4 cm mass in the right front of his brain, slightly crossing the midline. The ugly word "glioblastoma" crossed his lips like a whispered obscenity. The doctor recommended an MRI to confirm and said they'd order it.

As soon as Dr. Horstman left the room, Dad broke the silence by saying, "The Lord giveth and the Lord taketh away. Blessed be the name of the Lord."

Thanksgiving was still a happy day. Mom & Dad, Lis, Rachael, Mariah, Garland, Gracie and Carlie were all here for a fully turkey extravaganza.

November 29, 2023--Dad's MRI. It seemed forever until it could be scheduled, but looking back now, what with the long holiday weekend, Ozark Medical Center did pretty well. However, we didn't get a doctor's reading right away. His primary care physician, Dr. Morrison (whom I tend to think of now as less-than-a-portrait-in-courage) had his sweet little nurse Kelsey, call us with the news that the mass is likely a glioblastoma and in a shaky and halting voice, she told us it "may be cancer." (She had just seen Dad for his regular yearly check up and he'd been teasing her about cleaning his ears. She's a sweetie.) 

December 7, 2024--In the meantime, Dad began receiving two visits a week from a physical therapist (Lynn) because his large muscles were weaker than they should be, as well as a weekly assessment by a registered nurse (Sarah). His heart rate was dipping into the 30's which scared us. So we went to the ER. Dr. Pogue didn't do anything about his heart rate because the primary issue was still the mass. (In fact the only thing to do about a consistently low heart rate is a shot of adrenaline which is, as Maya says, "a band-aid." He made some calls and arranged an appointment for dad with Dr. Morgan, head of the oncology department at OMC.

December 8, 2023--Dr. Morgan, who is retiring soon, came in on his day off to meet with us. He showed us Dad's MRI and explained exactly what we were seeing--a tennis ball sized tumor with tendrils invading the surrounding brain tissue. He was kind, but direct. This condition has a "very poor prognosis," but if he wanted to pursue treatment, the next step is a biopsy. Dad could have it done in Springfield, but as soon as we told Dr. Morgan that Dad had Part G supplemental insurance, he recommended Barnes Jewish Hospital in St. Louis. (Note to those of you who aren't yet on Medicare. Do NOT be taken in by the Medicare Advantage advertisements. They may have zero premiums, but if you actually need them, they will hem and haw and deny and delay because they hope to run out the clock on your medical situation. With Dad's supplement, he can choose where he seeks treatment without having to be approved by a bean counter.)

After many days of Brian wrangling with OMC and Barnes, all Dad's records were received by Barnes and we got an appointment with Dr. Albert Kim, the head of the Brain Cancer Surgery department at Siteman Cancer Center (a division of Barnes) on January 9, 2023.

December 21, 2023--Knowing he was going to be seeing Dr. Kim was encouraging to Dad, but his spirits really lifted with Cindy & Linda made a surprise sister road trip to come see him & mom. It was wonderful to have them and they were able to be present for the folks 70th anniversary mini-party after church. Our pastor told the "Want a cooking, Bobby?" story of how mom set her cap for dad and we treated the congregation to cookies as they passed by the folks to offer their congratulations on this incredible milestone in their love's journey.

January 3, 2024--Dad had his yearly eye exam with Dr. Jones and he has 20/20 vision in both eyes! It was a treat to hear good news from a doctor! Later that day, Uncle Ron and Brad arrived from Tennessee to spend a couple of days with us and visit with the folks as much as possible. Uncle Ron and Aunt Doris are planning to meet us in STL next week at the DoubleTree when we go to Siteman.

January 7, 2024--Today is packing day for our trip and KC Chiefs football. The folks can't get the game on their Dish, so we'll bring them here to watch this afternoon. 

Dad's Condition Now--His heart rate has improved and is consistently in the 50's, occasionally dipping to high 40's. His appetite is good and he enjoys his food. He has no pain, which is a mercy because blinding headaches are usually a first symptom of this condition. He's on anti-seizure meds and they are working.

He battles incontinence. He still does his PT exercises but they are increasingly more difficult for him. He uses a walker and his pace is slowing. He has a different view of the passage of time. He may think it's only been a five minutes when an hour has actually passed. At one point, he forgot how to get back into bed and would sit on the edge for 40 minutes trying to muster the will to dive backward onto the mattress. (We have since worked on that and he's doing better.) In just the last couple of days, his voice has faded to almost a whisper and he's developed a cough. I know this is troubling to my sisters because they can't see that he wants to speak to them on the phone, but can't generate the voice for it. However, he hears you and loves to hear your voices. So please do call.

Dad's decline has been heartbreakingly fast. Only a week before Thanksgiving he was out mowing his yard.

He understands what is happening. He knows what he faces. He knows we are preparing to go to STL tomorrow. He is sweet and appreciative. That could change. In my reading about this condition, I found one fellow who called it the "robbing disease," because it takes things from you one by one. But for now, Dad is still himself and if that changes, we will remember it is the tumor, not him.  

Please pray for us and, especially for mom who bears the lion's share of this burden, however much we try to take from her, as we walk through this with him. 

"He who began a good work in you will carry it on to completion until the day of Christ Jesus."--Philippians 1:6