One Day at a Time

As this disease progresses, I find myself reluctant to have Kevin take that next step.  A week ago last Wednesday (Jan 4), a new hospice nurse visited the house.  After evaluating Kevin, she was sure he was on the decline and needed a hospital bed.  What? The recliner was working fine.  How would we transfer him from a bed to a wheel chair? "You won't," she calmly answered. "But you don't have to decide right now." With a few tears, we gave the okay.

Ironically, Kailey and I had just talked about taking the Christmas tree down over the weekend. Change of plans! If we were getting a bed in our living room, there was no room for a tree.  Once the hospice nurse left, we jumped into action. My trusty helper, Kailey, ran to the attic to fetch the boxes and we disassembled and boxed it up in no time.  With the boxes still piled in the living room, there was a knock at the door.  The bed was here!  Seriously??  She had told us they don't move furniture and they don't help move patients.  Eek! We weren't ready.

Sleeping as I write this

The delivery guy set the bed up in the middle of the living room.  Once he left, we tackled the job of moving the heavy, solid oak desk from the living room to the other room.  We couldn't lift it, so we had to find and use the furniture mover stored in the garage.  The two of us managed to transfer Kevin from his recliner to the wheel chair.  Picture Kevin (wrapped up in a blanket because he was cold) sitting in his wheel chair in the door way while two crazy women pushed and pulled furniture, vacuumed 100-year old cobwebs found under furniture and maneuvered his bed into place.  There was no shortage of entertainment that afternoon and to quote Kailey, "No one got hurt!"  Kevin was snug in his new bed. An afternoon that started with tears ended up to be quite fun.

This same hospice nurse encouraged us to use the medications in the care package to keep Kevin comfortable.  For a family that isn't big on taking pills, this was another step.  How do we know he really needs them?  What does he need? How much?  This doesn't fit into the "Buck up" mentality we live by.

I've surmised, since this nurse visited, that her theories weren't quite accurate.  She was making observations without ever having seen Kevin before so she could not accurately see progression (or decline).  Kevin is not on his deathbed.  His breathing is good. His coloring is fine.  He is still eating. Is he deteriorating? Certainly.  Most likely, that is due to his tumor growth.  He has no movement or strength on his left side at all.  His right side is weaker and more inaccurate when it comes to movement.  He cannot sit up without the assistance of the bed (or a whole lot of muscle power).  We no longer make any attempt to have him leave his bed.

Our biggest hurdle right now is sleep.  For some reason, Kevin cannot settle himself down to sleep at night.  Although his body is fairly immobile, he uses his head and right hand to do his own version of "thrashing".  I sleep on the couch next to his bed so I can answer to his needs. Unfortunately, that has become a challenge I cannot meet. Kevin gets wild and crazy ideas in his head that I cannot change no matter how hard I try.

One night, he was desperately trying to line up the flaps on his blankets. What does that mean? I turn on the lights.  He is wide awake.  I show him the blankets...no flaps. Then he wants help with the lid on the silo. I give him drugs for anxiety and restlessness. The weirdness continues.  At one point, I crawled into bed beside him and started asking him questions about his childhood thinking it would take his mind off the current dilemma occupying his brain.  That lead to a 30 minute discussion on setting an alarm.  "I set the alarm.  It's okay. Just relax." "Did you set the alarm? We need the alarm set?" "Yes, dear. I set the alarm." And on and on and on.

All of these scenarios are mixed with moans from gas pains, requests for drinks of water, and complaints of an ache or pain that is there one minute and gone the next.

Another night Kevin hollered at me, "Kathy!" "What?!" "Come help me open this shed door," as he is pulling on the side railing of his bed.  "You are in your bed. It's okay. Go to sleep." A few minutes later he is plucking at his bedding and stating, "There is something wrong with the upholstery in this vehicle.  Help me get out of this car."  Still later he claims he is setting up the kitchen.  He needs buckets for the utensils.  I crawl in bed with him again and get the bright idea to ask for "a break." In our former life, if we were toiling away at a task, we would agree to "take a break" for a certain amount of time.  I would lounge on the couch and he in his recliner.  Since Kevin was hell-bent on setting up this kitchen, I decided we needed a break.  Every time his head started to toss or his right hand went up in the air, I would say, "Can we just have a little break? I could really use a break."  Eventually, about 4 am, it worked, he was sleeping. Success!

The following night, after yet another series of crazy adventures, I thought I would try my tactic again.  "I need a favor. Can we just have a little break?" Kevin retorts, "Break? I'm just here for a color test!" Sorry for the language...but what the hell??? Although these stories are humorous to me now, I don't find them funny at the time.  I stink as a nurse and my patience leaves everything to be desired even when I have a full night's sleep.  After multiple nights, with snatches of sleep here and there, I am pleading, "Just go to sleep!"  Thankfully, he remembers none of any of this in the morning.

Are we trying drugs?  Yes.  At times it was a guessing game. Other times I had a concrete plan from the hospice nurses of what to give at what times.  In all cases, haloperidol, lorazepam, morphine and sleeping pills have not worked. After talking with others, the lorazepam seems to have a history of causing hallucinations, so we no longer have that drug as an option.

Do I have help? Yes.  Others, especially Kailey, have offered to take my overnight shift.  My issue is that we don't have a set plan yet that works.  If I knew that Kevin gets this drug at this time and this one at another time, I could feel more comfortable letting someone step in.  As of now, it is still trial and error with the never ending hope that tonight's method will work.

Our biggest joy each day is our visitors.  People continue to take time away from their busy lives to schedule a visit with us.  For me, that would be a tough thing to do...what will I say? what will I do? what will I see? But so many of you are such good people that you don't let your fears cause hesitation and you reach out to us.  Thank you.

Kevin is ready to go. He doesn't want to live like this.  I am ready...that's a lie.  I continue to live day by day, afraid to look into the future.  It's just too scary without Kevin. But I know this is not the life he wants to lead and I am not cut out to patiently provide the kind of care he needs. God will decide the right time.

Throughout all of this, Kevin still retains his sense of humor.  He may not remember much or struggle to find a word, but then he will throw out a line that will have all of us chuckling.


Tonight I am thankful for:

• Medications that give me hope that tonight could be the night he sleeps through the night (or at least a couple of hours).
• Making Fettuccini Alfredo tonight with Kailey and following it with a glass of wine.
• Short term memories so there are no hard feeling for my impatience.
• Not having to go to work the next day after a night with no sleep. Not everyone has that luxury.
• My mammoth blanket (a huge brown furry blanket) that I curl up in to search for sleep, whether it be on the couch or Kevin's bed or the dining room floor.
• That my car has not had to leave the garage during these days of rain, ice and snow.
• Supportive family that we know will be there when we need them.
• Visits that include updates and stories and laughter.

"Therefore do not worry about tomorrow,

for tomorrow will worry about itself.

Each day has enough trouble of its own."

Matthew 6:34

"Praise be to the Lord, to God our Savior,

who daily bears our burdens."

Psalm 68:19

A Year of Learning

Although I've always believed in life-long learning, this past year has pushed my learning on a personal level more than I could have ever imagined. This post will be more about me, because I cannot speak for Kevin. But I have a hunch Kev would agree with me in most cases.

What I've Learned This Year

Medical care is not a spectator sport.  It requires listening, questioning, note taking, researching, and decision making.  We so rarely saw a doctor in the past that we just did what they said, without a real understanding of what was happening or asking any questions.  Please don't think I am speaking negatively of doctors. I have the utmost respect.  But I now know, after Kevin dealt with multiple professionals, that it is our job to be informed and make sure all involved know the complete story.

I have a lot of work to do when it comes to my faith. Church and prayer have always been a part of my life. However, this past year I've witnessed the strong conviction and practices of many people and I want to be more like them.  It was a step for me to include a Bible verse in each blog post. Unlike some of you, I don't have passages committed to memory nor can I easily access them in the Bible.  Instead, I have to research.  Someone said to me many months ago, "I didn't know you were so religious."  I replied honestly, "I'm not, but I'm trying to be better."

When push comes to shove, I can do things I had never thought about.  For someone who ALWAYS knew that anything medical was "not my thing", who would have thought I would be giving shots twice a day or helping a hospice nurse put in a catheter. (Okay, let's be real.  "Helping" meant handing her items, attaching a syringe, and holding Kevin's hand. But at least I wasn't hiding in the other room).  What at first turned my stomach to jelly becomes easier over time.  Realistically, what I think is a "big deal" for me, some people are doing day in and day out. I just need to buck up.  

Time for a little tangent...it bothers Kevin and I when people say we are strong.  We just don't get it. We are going through life a day at a time.  Yes, life is hard right now, but we aren't doing anything extraordinary.  We are doing what anyone else would do...put one foot in front of the other and keep moving. Our journey is more public than others because I write this blog, but please don't make us out to be any stronger than any one of you.

Work is work. Kevin and I have a strong work ethic. We rarely took days off or used our sick days.  I still value that trait but now realize there is more to life than work.  I'm trying to put family first.  Of course, I write "there is more to life than work" but I already know that in all likelihood I will be filling my life with work once I am alone. 

Live a little. Boy I have a long way to go on this one. I envy people who just go and do.  I worry about the logistics or the expense or the whatever. Thankfully, over the past year, people have helped us to go and do and make memories.  

You never know what people are going through. Okay, I  knew this on a surface level but never really felt it before.  People are getting up each day, putting a smile on their face, caring for their family, going to work and seemingly living a "normal" life.  But behind the scenes there may be so much more going on that none of us could even imagine.  What leaves me feeling guilty is that, through the years, friends, family, co-workers and neighbors have faced struggles and I did nothing to reach out because I really had no idea life could be so hard.  When you lead an easy life, it's hard to relate, but that shouldn't be an excuse. I should be compassionate enough to recognize hardship without having to live through it.

People are amazing. We still cannot wrap our head around how much people have done for us and continue to do for us.  Cards, letters, food, visits, kind words...it is incredible. On a regular basis we hear, "we pray for you every day." Every day. Wow. It is heartwarming for all of us to know Kevin has touched your life in a way that you want to reach out and help. Thank you.

Now that leaving the house is so difficult, we appreciate the visitors.  If you decide to stop by, please don't feel you need to bring anything.  We have plenty of food.  Your presence is enough.  

The things you have learned

and received and heard and seen in me, 

practice these things, 

and the God of peace will be with you.

Philippians 4:9

Another Step in Our Journey

NOTE:  This majority of this post was written on Thursday, December 22.  Life happened and I didn't get it finished until today. So as you read...take yourself back in time to last Thursday.


This past week has led us to another step on this cancer journey.  As of our last post, the plan was to try one more round of chemo and head back to Mayo in January to see if it had made any difference. Of course, we all know that plans change.

Last Thursday (12/15), Kevin became much weaker. We had been to a work Christmas gathering the night before and the next day he didn't eat all day and never left his chair.  That night we started using the wheel chair in the house to get to the bathroom (or basically anywhere). He is no longer strong enough to walk on his own, even with the aid of a cane or walker. I also learned that I can no longer ask if he wants something to eat.  He'll say he's "not really hungry." Instead, I need to give him choices of what he wants to eat (not if he is going to eat).

The chemo drug was scheduled to arrive on that same Thursday (12/15) but it never showed up.  I'm thinking that happened for a reason.  I kept asking Kevin if he still wanted to take the chemo, but he couldn't make a decision.  "I don't know," was his response. I really wanted this to be his decision so it wouldn't come back to haunt me later.  By Friday, I knew chemo was not the right answer.  His body was already weakened. Everything was a struggle.  How would he ever manage with that nasty chemo drug overtaking his body.? Plus, it was getting closer to the holidays and at this rate Kevin would be feeling his absolute worst when we were supposed to be getting together as a family.  It just wasn't worth it.  I made the decision.

I believe that Kevin thought the chemo would make him better.  Not cure him, but improve his symptoms.  Unfortunately, that is not what the doctor told us.  The tumor, which is causing the symptoms, won't get smaller from the chemo.  There was a small chance that the chemo could slow the tumor's growth but he wasn't going to feel any better than he does right now.  I tried to tell him, which isn't easy to hear, "This is as good as it gets."

Monday (12/19) we signed up for hospice.  Tuesday (12/20) the nurse and social worker made a home visit.  I was secretly hoping they would solve all our mobility issues with getting to the bathroom. Realistically, we aren't quite ready to take those next steps...a hospital bed and a catheter. For now, what we are doing is a lot of work for Kevin, but it's manageable and the pros outweigh the cons. (Update: I can no longer transfer Kevin to the wheelchair on my own.  It sometimes takes Keaton, Kailey and I to manage the bathroom trip.  Thankfully, Keaton is working from home this week so he can help out.)

Today (Thursday, 12/22) was another milestone. Peterbilt had their annual Christmas lunch.  I had made it our goal to get him there even though he hadn't left the house in over a week.  Thankfully, Kailey was home to help. As we wheeled around the shop, the realization struck...Kevin would never be going to work again.  After over 29 years with this company, he was done. His mind and body couldn't do it any more.

Later that evening we were heading out to a gathering at the Schaitel shop to celebrate the purchase of a new Peterbilt. Kevin became emotional as we turned into the driveway. It was once again striking him how many wonderful friends he has in his life.  We are truly blessed.

Life today (12/28) is quiet.  We enjoyed a wonderful Christmas weekend with family and are happy for that time together. There was a bittersweet undertone as we know it will be the last. But, that could be true for anyone. We just happen to have notice and are thankful for this time.

Today we are thankful for:

• Insurance to cover medications and hospice
• Hospice caregivers who go into a stranger's home and help them through a difficult time. Although they are simply checking in once a week right now, we know they are there when we need them
• A comfy recliner and couch which make our slumber cozy and convenient
• Friends and family who share their precious time with us
• Our children who are so willing to help out, no questions asked, even when it becomes uncomfortable
• Another memorable Christmas which we can hold in our hearts

Whether you turn to the right or to the left,

your ears will hear a voice behind you, saying,

"This is the way, walk in it."

Isaiah 30:21

December 9

December 9, 2015. We were so blessed and grateful that Kevin had come through his brain surgery so well the day before.  He was walking (better described as shuffling), talking (joking like the usual Kevin) and eating.  It was amazing for us to fathom that someone could be digging around in your brain one day and you are functioning the next.  He still had weakness on his left side but there was every indication that strength would come back. Thank God for talented surgeons.

We were optimistic in so many ways.  They had recovered all visible signs of the tumor.  There were no signs of tumors elsewhere in the body. We still had our Kevin.

Late that Wednesday afternoon (day 4 in the hospital),  Kevin was seated in the recliner, Keaton on the couch and I was perched on Kevin's bed. The surgeon came in and pulled up a chair.  I don't remember the exact conversation. I do vividly remember the words "a year plus or minus six months."  I let out a loud guttural wail "No!" and fell on to Kevin's shoulder. The three of us huddled together, shocked and saddened.  It was our first introduction to the term, which has now been a part of our life every day, Glioblastoma.

From there, the information was a bit of a blur.  Yes, they couldn't see signs of the tumor in scans, but it is still there and it comes back.  Our celebration of no tumors elsewhere in the body was actually a bad sign.  Tumors that are throughout the body would not be Glioblastoma and perhaps more receptive to treatment. In harsh reality, there is no known cure for Glioblastoma right now (but strides are being made). Dr. Hughes was emphatic with his message to Kevin:  "This is YOUR time." Use the time you are given to do what YOU want.

After the surgeon left, we pulled ourselves together.  People were coming to visit and we could not let on what we now knew.  Kailey needed to hear it from us in person.  It was close to finals week so we had sent her back to school after the surgery to finish her week of classes. There was no way I was making another phone call like the previous Sunday.  Our families needed to be together so they could lean on each other. So we agreed to hold it in, put on a smile, and wait until the weekend to share the news. Because Kevin is who he is, we had at least 30 people visiting that night.  We moved Kevin out into a waiting area and filled every chair.  It was amazing.

December 9, 2016. Scan day in Rochester. A 10:00 am first appointment meant we didn't have to leave home before the roosters roused.  Yes, I had packed our toothbrushes and extra underwear this time! My first mini-stressor was parking.  As we rounded the corner, our usual ramp flashed "Full" so we made our way down the street to the next ramp.  My mind was bouncing around with questions...How far will we have to walk in the cold? Will I be able to find the building we need since we are coming from a different direction? Will our parking pass still work? As Kevin would say, "Not to worry."  The ramp was connected to the buildings at the subway level so we didn't have to walk outside.  The signage was excellent and our pass works in all the ramps.  Mayo really has this figured out.  I did have to chuckle about the handicap parking.  Every level of the ramp had at least 10 handicap parking spots close to the elevator...all full.  I'm thinking a patient at Mayo without a handicap sticker is the minority.

Labs went off without a hitch. Not nearly so busy as last time. The MRI waiting room was full but luckily someone was leaving as we arrived so we could find a spot for a wheelchair next to a regular chair. Like last month, they now have me come back with Kevin to help him change. We weren't assigned the "Relax" bay this time.  I wonder if that was a sign.  The bays seem quite small when you have a wheel chair and someone like me lugging our winter coats, medical paperwork bag and crochet bag. The nurse said I could take the chair and promised she wouldn't let anyone put an IV in me.

I was teasing the person who put in the IV about practicing her yoga moves as she put in the IV.  She had to kneel on a stool to get the right angle but she was young and agile. After the IV needle was in place, she wiggled it around a bit and decided to flush it again to be sure it was adequate for the line they needed during the MRI.  Kevin moaned a bit and said, "I don't feel good." I jumped up and started to hold his head while the IV person hollered for a nurse.  Suddenly that tiny bay was filled with about 10 people.  A doctor was holding his feet in the air. A nurse was applying ice packs. Others were trying to hook up machines to get his vitals.

It was only a few minutes of chaos but scary.  Kevin's blood pressure and pulse had dropped causing him to pass out.  The needle phobia had struck again.  Kevin did say later that the IV needle really burned, most likely when she was flushing it.  They got him to a cart/gurney and started him on fluids via IV.  Within a very short time he was feeling much better.  I was concerned that this would put him behind schedule or they wouldn't feel he was stable enough to have his MRI.  Can you tell I worry a lot?  No worries.  I got him changed and, with help, back into his wheel chair.  The MRI went off without a hitch.

I just want to clarify...I don't think I would classify myself as a "worry wart" (although Kevin and the kids may argue that point). In my mind, I am questioning all the possible scenarios so I'm prepared. How's that for justification?

For lunch we have moved from climbing the stairs for a burger at Newt's to wheeling across the street to Jimmy John's to let's just eat in the hospital cafeteria.  We didn't have to venture outside in the cold and everything is wheelchair accessible.  No greasy burgers and fries on the menu tho.

We checked into the Gonda building at 2:00 for our 4:00 doctor appointment. They always give us this look like, "Do you realize how early you are?" Where else are we going to go?  Plus, it's quiet and the chairs are fairly comfortable.

Typically, Kevin tries to nap while we wait and I had planned to crochet.  I wish I was brave enough to strike up a conversation with others in the waiting area, but I often wonder if it's like an airplane. Some people want to be just left alone.  We were entertained by an interesting sight.  I could hear a buzzing sound. A short distance away a young woman was shaving a young man's head...in the waiting room.  Really? His head was already closely shaven so it wasn't like locks of hair were falling to the floor.  It was more like shaving a beard.  But in the waiting area? Shortly after, she got out a bottle which appeared to be shaped liked rubbing alcohol and poured it on a cloth. She proceeded to wipe down his head, while he winced. Strange...but Kevin figured it out. They were putting on a Neptune--the device with patches on the head which provides electrical impulses.  We missed the final acts of this production as we were called back early to see the doctor.

Dr. Kizilbash began by asking if Kevin had any new symptoms.  Not really.  We feel that some things have worsened...mobility and confusion...but not new symptoms. Unfortunately, the scans showed that the tumor has continued to grow. We expected that.

However, Dr. Kizilbash said the scans were a bit misleading.  The Avastin infusion, which Kevin had been on, often masks some of the contrasts on the scans.  Now that Kevin has been off Avastin, all of the contrasts seem much brighter.  So it is difficult to determine how much worse the tumor actually is Also, since we had difficulties getting the chemo drug, he started it a week later than planned, so perhaps not enough time had elapsed to see an effect. Dr. Kizilbash recommended another round of the chemo drug.  He cautioned, chemo would not kill the tumor. There is a 10 to 20% chance that chemo could slow the tumor growth to give Kevin more time.

The last round of chemo kicked Kevin's butt.  He never actually got sick but he spent three full days in bed.   It was over a week of extreme fatigue, weakness and aches.  Why this time when he had taken this same drug before? It was a much higher dose. However, Kevin treated it like the pain of child labor...over time you forget.  At the time of treatment, he was ready to "pull the pin." When it came closer to scan day, he was saying, "Now I know what to expect." Ever the optimist.

Quite honestly, I had thought this would most likely be our last trip to Mayo.  We felt the tumor was growing so the chemo wasn't working and we would most likely sign up for hospice next week.

Now with Dr. Kizilbash's information, we had a decision to make...more chemo or hospice.  We didn't need to make a decision right away. Sitting in the doctor's office, I had a feeling what direction Kevin would take.  He wanted another round of chemo (I probably shouldn't remind him of that when he's battling the side effects!) Kevin has been struggling with some pretty big decisions lately but I think he felt confident about this one.  Dr. Kizilbash did agree to lower the dosage a bit so that might help too.

We'll be back in a month for another scan.

Today we are thankful for:

• A talented surgeon and successful surgery just over a year ago which left no permanent damage and his words of wisdom which we can all take to heart: "This is your time."
• Doctors and nurses who continue to be so caring. 
• People reaching out to help us, even in the smallest of ways...holding a door, offering a hand, moving a wheel chair, lighting our garage furnace, the list could go on and on.
• Conversations.  Some days just getting up and getting dressed is really hard work for Kevin.  He wonders if it is worth it.  Then we have wonderful conversations with friends and family and are ever so grateful that Kevin is still here to be involved in it all.
• Our kids, and their significant others, who often give up their weekends to be with us.  It means more than we can say. We often shed a few tears when they leave.

Yet you do not know what tomorrow will bring. 

What is your life? 

For you are a mist that appears for a little time and then vanishes.

James 4:14

A Year Ago

A year ago, the first weekend in December, Kevin and his co-workers were busy fixing trucks and making preparations for their move into their new shop in West Salem in the coming week. During the previous week, Kevin had a few instances where he was on his knees working and he just tipped over. A loss of balance. Odd...but he felt fine.  That Saturday evening as Kevin was heading upstairs to clean up before heading out for the night, he tripped up the stairs.  Strange, but it happens. Of course, I had casually suggested seeing a doctor but you know how that went over.

Kevin and I enjoyed our annual trip on the Redneck Express to The Goose Barn for pizza and cocktails. Kev even did a flip on the bars in the bus.  Those who have been on the party bus know what I'm talking about. Certainly no easy feat. On our walk home from downtown, Kevin seemed to be dragging his feet, which was unusual.  I can't remember if I actually told him to pick up his feet or just thought it.  I knew he hadn't had that much to drink but maybe he was just tired.  Work had been stressful.

During the night Kevin got up to go to the bathroom.  When he came back to bed, he missed the bed and landed on the floor. As I awoke with a start, I said, in my stern wifely voice, "That's it.  We're going to the doctor tomorrow."  Sunday morning as we got ready for church, Kevin wasn't using his left arm.  I began to panic. Was he having a stroke?  He could use his arm and it didn't hurt, but it just hung by his side. Of course, I wanted to go to Urgent Care immediately.  Kevin wanted to go to church first.

When we got to church, our friend, who is a first responder, was standing in the back.  I made a beeline toward him and pleaded, "Can you please look at Kevin? I think he's having a stroke."  Our friend had watched us come in and didn't notice anything out of the ordinary, but with the panicked look on my face, he took Kevin outside to do a few quick checks.  His conclusion was that Kevin wasn't having a stroke but should be checkout out.  Kevin agreed to go in after church.

I don't remember getting a whole lot out of mass.  My attention was on Kevin.  We counted money after mass and then went home to change.  Kevin drove us to Urgent Care in Onalaska.  As you've gathered, Kevin rarely went to the doctor.  However, I decided he could check himself in at the desk. The conversation:
      "How can I help you?"
      "I'm not feeling well."
Not gonna lie...I couldn't help but shake my head and smile.  Really???  Who comes to Urgent Care when they ARE feeling well.  Anyway, they got his information and a few of his symptoms and told him to have a seat. So we waited.  Eventually, they called us back to a room where a nurse could ask more questions.  When we entered the office, it was a nonchalant process...have a seat, we'll take your vitals, ask you some questions, etc. Clearly he said something that changed their tune.  They took him back to a room, with the nurse holding on to him as if he was unstable, and a doctor joined us soon after. Dr. Lynn ordered a CT scan of his head because Kevin said he had fallen while hunting a few weeks ago (which was all news to me). They thought maybe he had hit his head even though Kevin assured them he hadn't.

N e v e r  in our wildest dreams did we think Dr. Lynn would come back and say, "You have a brain tumor."          What??           Wait....

Our new journey began.

Technically, the diagnosis date was December 6 (one of those dates that becomes ingrained in your memory).  But it was this weekend, one year ago.  People who had been with us on The Redneck the night before, couldn't believe the news either.  Kevin said he'd be back next year.  He was right. Although we followed the bus over to The Goose Barn in our own car last night, we were able to enjoy fabulous pizza with friends one year later.

This year, this journey, has brought us many unexpected blessings.

• Our family has made it a priority to be together. We have heard and said the words "I Love You", words that weren't often spoken and felt awkward, more than ever before.
• Friends who we didn't see often enough, and for no good reason, are now making it a point to get together. We so enjoy the stories and laughter. 
• Our employers have been unbelievably accommodating. We both have a strong work ethic and have dedicated ourselves to our work. Admittedly, many times work was too much of a priority. 
• Unbelievable caregivers.  My admiration of those in the health care field continues to grow. Whether it is the check-in person at the desk, the lab technician, the nurse or the doctor, they have all been a vital part of Kevin's care.
• Our eyes have been opened to the struggles of others. Quite honestly, we were spoiled. No health problems or addictions or family struggles or money troubles or work issues.  Now I realize how many people are moving through their daily lives with struggles I could not even imagine.
• People are good. Amazingly good. Our hearts and minds still cannot grasp how wonderful people are.  There are so many of you that I aspire to be like some day.  I am learning and growing.
• We pray more.  I still struggle and get easily distracted but I'm trying.
• We now regularly acknowledge, as part of our blessing before meals, what we are thankful for.  It has brought us laughter and tears.

If only our eyes could have been opened to these blessings without the force of looming death. But, better late than never and most likely part of God's plan.

"Show me, O Lord, my life's end

and the number of my days;

let me know how fleeting is my life.

You have made my days a mere handbreadth;

the span of my years is as nothing before you.

Each man's life is but a breath.

Psalm 39:4-5

It's the Little Things

It's the little things we take for granted...our own bed, clean clothes, toothpaste.  We arrived home last night and are thankfully appreciating those little things.  To make things even better, the kids are home this weekend! Our "plan" for the weekend? Rest and togetherness.

So what's been happening these last few days? To begin with, let me just say that when we are in that hospital setting, it feels like we are in another world.  I cannot find the words to describe it. Time moves differently. I would stare out the window watching people and cars go here and there but it was like that was their world and the hospital room was ours.  There is a detachment from what's going on in life, work, home... Last December I remember asking a friend to send me Snapchats of people doing regular old things around school. I think I needed to feel like that world still existed.

Wednesday night, after being admitted, Kevin was given an ultrasound of his left leg which had been experiencing swelling for the past several weeks.  They wanted to check for blood clots.  We weren't given any results right away but I knew something was up when the nurse said he couldn't have anything to eat or drink after midnight.

They let me sleep on the couch in Kevin's room.  I appreciated being nearby even though it meant I too got to be woke up whenever anyone came in to the room.

As I mentioned in the previous post, they had started Kevin on a Heparin drip to start thinning his blood and were taking blood draws every 6 hours.  About 2:00am they stopped the drip because it was working a little too well.

Dr. Hsu (pronounced shoe) told us the next morning that they had found a clot in Kevin's leg and that they wanted to put a filter in his vein that would prevent the clot from reaching his heart or lungs. They would be going in through his neck with a catheter device which would put the filter in place.  Kevin would be awake during the procedure...even though he tried to convince them to knock him out.

The drawing represents Dr. Hsu's attempt to show us where the filter was placed.  The larger circles at the top represent the lungs.  The smaller circles in the vein represent the range where the filter could be placed.  They could have come up through his groin area, but they chose his neck.

Thursday morning became a waiting game.  We had to wait for the team of doctors to come and officially give us basically the same information.  I found it humorous that this group of 6+ doctors really told us less than Dr. Hsu had that morning.  Also, when one pager went off, they all looked down at the same time to check their pagers. Kind of like a bunch of teenagers checking their phones.  Later, tho, I did discover that this team made things "official".  Dr. Hsu would give us the scoop in the morning and they would put their stamp of approval on it a few hours later.

Since we had a little time, and Kevin wasn't hooked up to any IVs for now, we decided to attempt a shower since it was much more handicap accessible than ours at home. Because the nurses didn't really understand Kevin's strengths and weaknesses, and because I thought it would be less embarrassing for Kevin, I pretty much took over all bathroom duties.  At times, I'm not sure that was the best idea.  For example, at one point we were trying to leave the bathroom. Kevin headed toward the sink and I thought we should head toward the door.  Kevin's brain is thinking: "Head toward the most stable thing in the room." My brain is thinking: "Take the least amount of steps possible."  Of course, our brains aren't talking to each other.  Plus, patience gets a little thin when sleep was minimal at best.  We got over it, but I'm sure the transporter out the hall with the gurney overheard and was thinking, "Oh my. That poor man."

Also, it got a little scary for me at times because Kevin's brain and body aren't always on the same page.  In one instance we were trying to get him stood up in the bathroom but his legs weren't cooperating.  I thought he was falling so I had one arm around him to bring him back and the other hand grabbing the bar so he didn't pull us both over.  My heart was racing. He kept saying, "You're pulling me over."  In his mind, my arm was pushing him in that direction rather than pulling him back.  It made absolutely no sense to me.  Once we got him sat down again, I could breathe.  As usual, my rock is telling me to "Relax".  Not easy to do when I'm feeling the burden of keeping him safe.

Once Kevin left for his procedure, I had the task of keeping people updated.  Let me tell you, that's not so easy.  Kailey asked if I was bored.  Are you kidding?  I was able to watch a marathon of Flip or Flop on HGTV (no cable at our house) and knit while sitting in the recliner. Some people can't handle a sedentary lifestyle but I'm a pretty good couch potato.

Kevin was nervous about the procedure, afraid it would hurt.  But when he came back he said there was nothing to it.  He had a bandage on his neck and had to stay sitting/laying at a 45 degree angle for a while.  Of course, as soon as he got back in the room, the echo cardiogram people were there to check for any clots in the heart.  Not quite sure why they didn't come in the morning but we are not in charge.  Finally, at about 5:00, he was able to eat!  I'm not sure how he lasted so long.  I know I would have been complaining.  By the way, the echo cardiogram came back fine.

That evening our friends from Wabasha came for a visit.  She brought me toothpaste!  I had a toothbrush but no toothpaste.  She actually brought the whole deal--toothbrush, paste, floss, and picks--because she is a hygienist and wanted to make sure we were practicing good dental hygiene. They also brought snacks which I may or may not have shared with Kevin.

The nurses did start the Heparin drip again during the day for a few hours.  However, that night they transitioned into a shot instead of an IV.  Evidently, Kevin's type of cancer can cause clots so he will need to be on a blood thinner from here on out.  The body works to take care of the clots itself and the thinner will prevent more clots from happening.

Friday morning I had to shower.  The "washing up" wasn't cutting it.  Thankfully, one little bag I had along had some underwear in it.  Truthfully, I had forgotten they were in there and I was hoping the elastic wasn't rotted. ;)  Even though my clothes were on day 3, I felt pretty good after that shower. By the way, a friend from high school, who lives in Rochester, read my previous post and called to offer clothes so I had other options. Aren't people great?

Dr. Hsu, and later the team of doctors, agreed that we could go home! The procedure to put in the filter went well, he had tolerated the shot without issue, and his vitals were good.  The head doctor did tell us that he had been sharing the pictures of Kevin's CT scan with others because the clot was so large.  Dr. Hsu tried to give us an idea of its size by showing us the scan on the computer.  They labeled the clot a saddle embolism because the clot went over the vein that connects both sides of the lung (see the shaded area in the drawing above).  They believe the clot started in his leg and as pieces broke off they went through the heart and into the lung area.  The doctors said Kevin has a strong heart.  (I kidded that I thought they did the echo cardiogram to see if he had a heart...hee hee).

The next task was learning how to give those blood thinner shots at home.  We had to watch a how-to video, which was painful enough for Kevin.  I had to keep asking, "Are you okay?" He made it through the video but didn't think he could give himself a shot.  Guess that leaves me...but I did it. The task itself isn't so hard. I just don't like doing something that I know is hurting him.  As of this morning I'm three shots in with no issues.

That whole ordeal must have taken a lot out of Kevin because he slept from 9 until noon, when they gave us the official okay that he could be released.  However, we were surprised to learn that an appointment had been scheduled at 4:00pm to see Dr. Kizilbash back in the Gonda building.   So, 48 hours later, I was pushing Kevin back to the Gonda building where this little change of plans had started.

Thankfully, Dr. Kizilbash saw us early.  His eyes were sympathetic as he knew this had been a long three days for us and we were ready to go home.  Dr. Kizilbash recapped everything for us including explaining the CT scan again.  He said it was the biggest clot he had ever seen.  It could have been fatal.

Now some reading this, who have seen Kevin lately, might feel that might have been a good option. No, I don't take that as being cruel.  I get it. You see the deterioration and think, "I would just want to be gone."  Although it is hard to watch Kevin struggle, we are so thankful he is still here with us.  His body doesn't cooperate but we still have his personality and humor and company.  I am thankful EVERY DAY we are given this time, even when days are hard.

The overall reason Dr. Kizilbash brought us in was to change our treatment plans.  At this point, he does not feel continuing with the Avastin infusions every two weeks is safe.  He does still want Kevin to start on the Temodar chemo drug when it arrives.  We will head back to Mayo in a month for another MRI.

So today we are thankful for so many things:

• to be home
• for our kids to be with us
• for our family and friends--for all they do and for all they offer. We know they are there for us.
• for doctors
• for medicines, even if it means a shot in the belly
• for the little things we often take for granted
• for each and every day

But godliness with contentment is great gain.

For we brought nothing into the world, 

and we can take nothing out of it.

But if we have food and clothing, we will be content with that.

1 Timothy 6:6-8

When We Wake Up in the Morning

When we wake up in the morning, we often have a plan for the day. It may be a mental list of what needs to be accomplished or a calendar full of scheduled events or that written to do list scratched in a note pad.  However, we know that life happens and those best laid plans don't always go according to plan. That's not always a bad thing.

Today was MRI day for us.  We set off for Rochester at 6:15 this beautiful fall morning.  The ramp was filling up fast and I felt thankful to find some open spots on Level 8.  My stomach did a quick turn when someone pulled in right next to us right away.  How was Kevin going to get out and into the wheel chair? Thankfully, the elderly couple noticed me lugging the wheel chair out of the trunk and were willing to back up a bit until Kevin was out and about.  As we approached the elevators I was reminded of how much Kevin's mobility has changed when I think back to each time we have approached these elevators.

The lab waiting area was crazy full. At one point I counted over 60 people waiting to get stuck by a needle. It was a true test of my wheel chair maneuvering capabilities getting through that maze. This time, they let me go back with Kev to prep for his MRI.  No, I didn't put in the IV. I was there to help him get into the three-armed gown (something I had never seen before). I think someone was sending us a reminder when I saw our little prep room was named Relax 16. Pretty cool. Clearly Kevin took the advice since he had a nice nap during his MRI.

As usual, I couldn't wait for Kevin to get done so we could eat! This time, I wanted something simple and thought we would head toward the big University of Minnesota M that I often saw out the window of the Gonda waiting room. However, I hadn't looked at any maps so our walk around the block wasn't successful. We ended up back at Jimmy Johns where freaky fast turned into freaky frustrating.  Not their fault.  It was crowded with limited seating and no handicap seating available.  After trying to juggle the wheel chair, our sandwiches, drink, and bags, and after runnng my foot over more than once, my frustration level had peaked. Yes, I said a naughty word. With help, we managed to get into an adjoining room which happened to be the lobby area of a hotel.  I felt guilty eating on their couches when we weren't guests but no one kicked us out!

It was nice to be able to relax outside the hospital setting before checking in to see the doctor.  Once again, we were shocked by how long the check in line was.  Not sure if Wednesday's happen to be super popular or if it was the timing of our appointments.

As expected, Dr. Kizilbash didn't have the best news about Kevin's MRI. The tumor is continuing to grow. Yes, we expected it, but it is still difficult to hear and realize the end is closer. So now what?

• Try another dose of the chemo drug Lomustine again (same drug he had 6 weeks ago). Since it didn't seem to make a difference last time, it was not likely to produce a different result.
• Try carboplatum (no clue if this is spelled correctly) IV chemotherapy. It has similar side effects but only 5 to 10% of patients see any benefit
• Look at a brand new Phase 1 clinical trial offered at Mayo.  We have been put on the waiting list for this trial but we have to read though a multi-page packet to decide if it is right for us.  We know that because this is new, there is no data to prove success and it could be risky. If we decide to go this route, we know it will be to possibly help someone in the future.
• More radiation. We all decided this was out since radiation in the same area of the brain causes damage to healthy brain cells 25% of the time.

Obviously those options had us shrugging our shoulders rather than feeling hope. Kevin did ask if he could continue with the Avastin infusions.  Dr. Kizilbash agreed.  Although the treatment wasn't curbing growth, it was helping with swelling and Kevin feels better during mid-treatment. After the doctor looked back through our old records, he decided to try the chemo drug Temodar again.  Kevin used that drug initially after surgery but it was discontinued once the tumor reappeared back in March. He didn't experience a lot of side effects so it is worth a try.

Scans will now be monthly.

As we were wrapping up our appointment, we asked about a few changes Kevin had been noticing.  His left leg had been swelling for the last several weeks. For the past two weeks he has started wearing a compression sock to help. Lately, Kevin had also been experiencing shortness of breath. Yesterday, he was huffing and puffing all day long. It was almost like we saw a lightbulb come on for Dr. Kizilbash when he made the connection.  Both changes could be symptoms of a blood clot.  The doctor decided to schedule a CT scan of Kevin's chest and an ultrasound of his leg.  

Although we know it is important to check things out, it meant another trip to Rochester tomorrow. At checkout we learned they could get Kev in for his chest scan yet today.  After another IV, he was taken back for his scan and I was sent to the lobby.  Remember when I talked about plans for the day? What came next certainly wasn't part of our plan or even on our radar.  

They found a large clot in Kevin's lungs.  Honestly, they freaked out a bit.  Initially they told Kevin he would need to be taken by ambulance to St Mary's emergency room and then eventually admitted to the hospital.  Thankfully, Kevin's doctor came to our rescue. He had just seen Kevin so he knew Kev wasn't having trouble breathing and his coloring was good. Dr. Kizilbash allowed us to walk over to Methodist Hospital and be admitted. Well, Kev did the wheel chair ride while I pushed.

So tonight I write this on my iPad in the hospital room while Kevin is sleeping.  They have started him on a Heparin drip and will check his blood every six hours.  So why not just give him a blood thinner and send him home? With Kevin's current medications he has more possible issues with bleeding.  They wanted to give the thinner gradually in a manner which could be stopped if there were issues. We will learn more tomorrow.  Hopefully we can head home tomorrow or Friday.

Although our day didn't go according to plan, we have so much to be thankful for:

• Doctors who put the clues together to solve problems
• Finding the clot now where it could be fixed. Had it not been discovered now, the clot could have totally blocked his breathing.
• All of the wonderful nurses who do things I could never imagine and work the most horrendous hours.  Our nurse Maggie just picked up another shift so she will be here all night long after working all day. Kev said it was because she wanted to spend more time with him!
• All of the strangers who  stop and ask if we need help. I watched a man in a maintenance uniform stop and help a woman move from her walker to a wheel chair and then get her safely parked out of the way while she waited for her daughter.
• Bosses who are accommodating when plans change.
• Continued thoughts and prayers

Many are the plans in a person's heart,
but it is the Lord's purpose that prevails.
Proverbs 19:21