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

L.E.S.

A Saturday or so ago I was experiencing L.E.S. (Leaky Eye Syndrome*).  Yes, I was cooking which included dicing onions, but the onions were not the culprit. Some of you, mostly the females, will understand what I'm talking about.  With little or no instigation, the eyes well up and the tears fall.

You may assume they were tears of sadness.  But in reality, the tears were from overwhelming gratitude.

Our Facebook connections know that about three weeks ago I posted asking friends for advice on a ramp for our house.  The comments, personal messages and texts showed us once again how much people care and want to help. About this same time, a longstanding pillar of our community passed away. People had mentioned that there had been a ramp at his home since he had been wheel chair bound. However, I certainly didn't feel like I knew the family well enough to ever feel comfortable asking about their ramp.  No worries.  It didn't take long before I had two different messages from the family offering their ramp.

So that "leaky" Saturday morning I was overwhelmed that two people who had just recently lost their father were not only willing to give us their ramp, but also deliver it to our house.  Definitely small town goodness shining through.  Every time I tried to process what people are willing to do for us, the tears started again.  One would have thought I was watching non-stop Hallmark commercials.

Sunday's message in our missal was "Live in awareness of God's gifts!" and just reinforced my thoughts from the previous day. Sr. Koellhoffer wrote: "When our children are young, we school them in saying 'thank you' for any courtesy, gift, or praise given them. What we're really teaching them is awareness, the ability to recognize and name what they've received as grace. And so it goes for us for the rest of our lives.  Before we can say thank you, we have to live in awareness of what comes to us as gifts large and small... Loving God, lead me into awareness of your gracious gifts to me today." 

When Keaton called to tell us about his weekend, he mentioned the message the priest had delivered that Sunday morning.  To paraphrase, we should not attend church and expect to be entertained. Instead, we should attend church to give thanks. To quote my colleagues who teach English, "I concur."  Well, I do like to be entertained too, but I've always felt it was important to start every prayer with a thank you.

All of this reminded me of a book I had read where the author said when she got up in the morning, she said "thank" as one foot touched the floor and "you" as the other foot joined the first. What a great way to start the day.

Today, our ramp project is closer to completion. Another good friend made some phone calls and found us another segment of aluminum ramp.  My Dad and Uncle worked hard to build a platform and safely connect the two pieces together. Tonight we came home and a railing had magically appeared on the lower ramp.  Okay, so the two guys who worked on it today probably didn't just snap their fingers and probably wouldn't appreciate my making light of their labor. However, Kevin can now safely enter our house unassisted. And when the time comes, our entrance is now wheelchair accessible.

Today we are thankful for:

• The caring and giving people of our small town who continually show their generosity and goodness.
• Those willing to help us with the tasks that require the physical labor which Kevin can no longer do
• The many gifts that God has blessed us with 
• The time we have to be together

"Rejoice always, pray without ceasing, 

give thanks in all circumstances; 

for this is the will of God in Christ Jesus for you." 

1 Thessalonians 5:16-18 

*Truth be told, Google says there is no such thing as L.E.S. Thankfully I'm not making light of someone's real ailment.

Buck Up

I wanted to title this post, "Looking for the Easy Button." But that didn't seem right.  In the grand scheme of things, the frustrations I'm feeling today and the disappointments from the week are not that bad.


Gosh, just writing that made me smile.  Kevin uses that line on me all of the time.  Kathy: "How's my hair?" Kev: "It's not that bad."  Kathy: "What do you think of my outfit?" Kev: "It's not that bad." Kathy: "I tried a new recipe. What do you think?" Kev: "It's not that bad." To truly get it right, you have to emphasize the word that when you say it. Imagine my many responses.  The most positive would be a sarcastic, "Thanks (said with attitude)."

So why do I end up crying when I'm on the phone when dealing with this "stuff"?  Today it was the poor person at Diplomat Pharmacy. Little did she know...

• that the drug in discussion had been suggested by the doctor at Mayo on Sept. 8. Before leaving that day, we asked that all reports be sent to Gundersen, specifically Dr. Kwong.
• that I had called Diplomat Pharmacy the very next day to make sure that all of our paperwork was in order so that once the prescription had officially been filed, it could be sent immediately.
• that on September 16 I emailed our Mayo report to Dr. Kwong and requested that he order the drug (in hopes that we could start it when seeing him on the 22nd)
• that on September 21 I called Dr. Kwong's nurse asking if he had received my email, as well as the reports from Mayo, and ordered the drug.  He didn't recall seeing any email from me but the records from Mayo were there.
• that we met with Dr. Kwong on September 22 and he agreed to call the pharmacy that morning
• that Dr. Kwong's nurses called twice to discuss chemo drug procedures and get our oral consent...even though this is Kevin's third different chemo drug AND they didn't bother to do any of this while we were in the office that day.

However, the lady at Diplomat did know that our prescription still hadn't been filled and when the order got beyond the actual pharmacists' counter, they would need to call us to arrange payment and delivery arrangements.  "Could you take my credit card now for payment?", I ask. "No. We have a specific set of steps we must follow..." which she proceeded to explain.  It all made perfect sense but it just felt like another roadblock to me after all of the above and I didn't want to deal with it. So the tears welled and dripped down my cheeks.

Perhaps we should take bets on when the drugs will actually arrive from Florida.  You know, like a baby pool of the date and time of when the newborn will arrive.  Feel free to make your guess in the comments or reply on Facebook.  Why not have a little fun with this, right?

What's ironic is I'm not even sure we want this drug I'm fighting so hard to get.  I sensed that Dr. Kwong was a little hesitant about our decision to add Lomustine.  He said it has been around about 40 years and was the standard drug before Temodar (the first chemo drug Kevin took) replaced it. The way Dr. Kwong described it, I'm afraid that Kevin could get quite sick.  

Once we get the drug, Kev will take it once every 6 weeks.  About an hour and half before bed he needs to take an anti-nausea medication.  Twenty to thirty minutes later he should take two 40 mg capsules.  He will repeat this twice so altogether he has taken six of the 40 mg capsules.  The hope is that he can sleep through the possible nausea and keep the medicine down.  In addition, his blood levels will need to be checked weekly.  Low blood counts can increase the chance of infection and catching something from those germs we carry around.

Last Friday we heard from Karen at the Brain Tumor Network regarding clinical trials.  She sent us a few to look at.  I sent them on to Mayo as well since Dr. Kizilbash said he would be willing to look at any possibilities.  Kevin was most interested in a Phase II trial at MD Anderson in Texas.  By the way, clinical trials have three phases.  Phase I is the initial testing and the most risky.  If they see some positive results they will move to Phase II and eventually to Phase III.  

So we were encouraged that it was a Phase II and Kev likes MD Anderson.  As he described it, "I've called them before and they are really nice and actually call me back."  Unfortunately that trial required infusions twice a week for three weeks and then repeated.  I was not in favor of this trial because it would mean we would be away from family and friends for an extended period of time.  Let's just say we didn't see eye-to-eye on this one but in the end, it is Kevin's decision.  Wednesday, Kevin called MD Anderson and they told him he didn't qualify because he is taking Avastin. 

In another trial, a ICT-121 dendritic cell (DC) vaccine is made from patient's white blood cells and given back to the patient over several months.  The goal is to stimulate the patient's immune system to kill the patient's glioblastoma tumor cells. The study didn't say specifics on treatment times so I called them on Wednesday, but they said they stopped taking participants at the end of August.

As Dr. Kwong said on Thursday, "You are running out of alternatives." I knew that but it hit me hard. Doors seemed to be closing without new ones opening.  Leave it to Mr. Positive... As I shared my feelings on our drive home from the appointments, Kevin said, "A miracle is going to happen." 

So why did I pick, "Buck Up" for my title?  When the kids were little and would complain about aches or pains, I would be the ever so compassionate mother and say, "Buck Up."  Kailey hated when I said that.  Envision a teenage eye roll. So now I'm delivering myself a dose of my own medicine.  Buck Up.  Things aren't really that bad.  Just put it into perspective.

Little side story...Kevin thinks someone should call the police on me...for leaving a sleeping husband in a hot car.  Here's the real story.  Last night when I was driving Kevin home from work, I was encouraging him to take a nap before friends came over.  "Why don't you crawl in bed upstairs.  I'll pull the shades and shut the door and you can snooze away." Kev replies (with a slight whine to his voice), "Why can't I sleep in my chair?" "Because I want to run the vacuum cleaner and clean the bathroom and I'll be too noisy for you to sleep."  As I pull in the garage, he puts his seat back and says, "Why can't I just sleep right here?" Okay. Whatever. I closed the garage door and went out to check on him an hour and a half later.  After his blissful sleep he teasingly accused me of leaving him in a hot car...

Today we are thankful for

• those who continue to pray for Kevin so he can get that miracle
• the patience of those who take phone calls from pesky people like me
• cozy cars to nap in
• continued research for new treatments
• positive attitudes

"For I know the plans I have for you," declares the Lord, 

"plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

A Curve in the Road

Imagine driving down the road, perhaps daydreaming a bit because life is good, when...whoa...a sharp curve! You weren't expecting it so you slam on the brakes, adjust, re-evaluate, but slowly continue on.  That was us on December 6. Other times, you're cruising along, but you've been on this road before and have some experience so the curve, not so sharp this time, just slows you down and leads you in another direction.

Today, MRI day, gave us another curve to deal with. However, based on what we've learned from the past, we were expecting it.

Last weekend, Kevin was having stability issues when walking so he decided to start using a cane. Trying to depend on having something around for steadiness (like a wall or piece of furniture) wasn't realistic so the cane was a great idea.  Thankfully, Kevin's mom had a couple in storage he could test drive.

This week has been a bit trying on the home front for both Kevin and I.  He struggles.  I want to help. What can I do to save him steps or time or effort?  Unfortunately, my "helpfulness" crossed the line into "you don't think I can do anything." Conflict. It's so hard to have people do things for you (Kevin) but it's so hard to watch people struggle when they don't have to (me). Clearly I need to back off.

This morning Kevin and I made the trip to Rochester.  We were lucky enough to have a quick visit with good friends on the way over which brightened our morning.  Luck was on our side again for parking.  As we waited for the elevator in the parking ramp, I did reflect on how Kevin's mobility has changed each trip we make.  When we started, we took the stairs, just to get some exercise. Today Kevin had his cane and stairs would not have been a viable option.

After coming out of labs (a quick blood draw) and using the restroom, Kevin said he needed to sit down.  He said, "I feel a little light headed.  I think I'm going to need a wheel chair." Thankfully one of the ladies who checks in lab patients was willing to retrieve a wheel chair for us from one of the entrances.  The lightheadedness quickly passed. Personally, I was a little relieved we were using a wheel chair.  Even with the cane, and my holding his other hand/arm, Kevin would trip.  His left leg isn't working properly so his toe drops down and catches on the floor causing him to trip and lurch forward.  It gave my heart a jumpstart every time.  Using the wheel chair was a little easier on my ticker...although I'm not sure Kevin could say the same with me driving the wheelchair.

After the MRI, we set out to find lunch.  At one of the loading/unloading zones, Kev was getting out of the wheelchair so we could walk the block or so to get a sandwich.  One of the helpful attendants said, "You can take the wheel chair."  I wasn't sure about it. We looked at each other and decided a walk might be good.  As we made our way to the corner to cross at the light, I was inching Kevin closer to the curb.  He doesn't move real fast so we had to be ready.  A nice woman in scrubs said, "Do you need a wheel chair?" "No thanks, we're going to try walking."  I smiled and thought, "These people are so kind and considerate. How nice."  What I didn't realize until we sat down to eat was that Kevin had a yellow band on his wrist that said FALL RISK.  No wonder!!

Our appointment with the doctor was at 3:20 so the wait did not seem as eternal as last time.  Plus, Kevin was in a pretty good mood.  Not so uptight about the possible results.

Today we saw Dr. Sani Kizilbash.  Not sure why, but he was knowledgeable and nice so who are we to question.  He showed us a comparison of the last three scans (May, July and today).  Today we learned that not only do MRIs have several different angles, but several different views.  For example, we were aware of the Contrast and Flare images.  The injection into Kevin's IV help create these pictures.  However, we hadn't heard of Diffusion Weighted imaging or Perfusion images.

The contrast and flare pics didn't really look that much different from last time.  There was some increase in a dark area which he believed to be swelling.

As I had thought during our last appointment, Avastin (Kevin's current drug) makes swelling go down, but it can mask tumor growth.  In July, we were assured that the tumor looked better and that change wasn't being caused by the Avastin masking.  That diagnosis never sat quite right with me.  In my gut, it didn't make sense.  If his tumor was better, why weren't we seeing an improvement in symptoms?  However, the July diagnosis did bring Kevin peace of mind and hope which is extremely important.  The symptoms weren't getting any worse and I believe we could go and do more this summer because of Kevin's state of mind.

Perfusion images show blood flow in the brain. When just looking at blood flow, there appeared to be no change in the tumor.  But as Dr. Kizilbash explained, that is why it is important to gather as much information as possible.  The Diffusion Weighted imaging shows the density or solid area of the tumor.  Those pictures appear to show growth.  The Avastin is still working to control swelling but the tumor is still growing. The picture shows copies of the Diffusion Weighted imaging from May (left), July (center) and today (right).  The white area (tumor) is larger.

So now what?  Continue with the Avastin every two weeks.  Add another chemo drug called Lomustine.  This is a pill taken once every 6 weeks.  It is a stronger dose of chemo and is based on nitrogen mustard (chemical compounds similar to mustard gas...not exactly thrilling). With this drug, blood counts are taken weekly.  Generally blood counts tend to drop the first three weeks and then start coming back the next three (thus the six week interval). Of course, with any chemo, there are the possible side effects of nausea and fatigue.

An MRI is done along the same schedule, every six weeks, as the drug.  Ideally, they try to have patients get six treatments (thus 36 weeks) but patients generally only get four due to blood count issues. Today, the doctor called Kevin's blood tests "boring" which means they were good, nothing to talk about. He did recommend doubling the dexamethasone (steroid) from 3mg to 6mg to see if it would make a difference.  If Kevin didn't notice a difference within a few days, he is supposed to go back to 3mg.

We also discussed clinical trials.  There are still no trials at Mayo that Kevin qualifies for.  Dr. Kizilbash recommended we check with the Brain Tumor Network to help with research.

Although better news would have been preferable, we were ready for this curve in the road so Kevin (Mr. Positive) won't let it slow him.

Today we are thankful for:

• Beautiful sunny days and the opportunity to enjoy them
• Doctors who can share not so fun news but still laugh with us
• Drugs which give patients options and hope
• Continued research to find a cure
• Helpful and considerate strangers
• Caring friends and family who share their time and well wishes and prayers
• Experiences which help us learn and grow so we can handle those curves in the road

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  2 Corinthians 16-17

What's Up, Buttercup?

Phone calls from Kevin's work in the evening can sometimes be a frequent occurrence.  He's known to answer with "Dominos!" or "Pizza Hut!" One particular salesman always gets a, "What's up, Buttercup?"  So really...what is up?  There hasn't been a post since JULY???

Our summer was full and busy and fun. We took time to enjoy life. Personally, I really tried to appreciate each and every beautiful day.  It reinforced how much I love the warm weather (and am dreading winter).

Many of you know that Kevin is a motorcycle enthusiast.  Although skeptical at first, he even convinced me how amazing life on a bike (motorized of course) can be.  The wife, who usually read or slept during nearly every car ride, realized that life looks pretty spectacular when riding and I came to appreciate Kevin's passion.  Last November, Kevin purchased a brand new Indian Chieftain. When diagnosed with the tumor, one of his regrets was not being able to ride his motorcycle.  And don't think he didn't try.  Unfortunately, he learned that he didn't have the strength for this big bike. He also didn't have the coordination in his left foot to shift. As the days grew warm this Spring, Kevin's frustration grew.  He just wanted to ride.

This winter my Dad had purchased a Can Am Spyder (a 3-wheeled motorcycle).  He immediately offered to let Kevin borrow his bike.  But we (yep, me too) already had a mindset.  Those motorcycles were for old people.  We used to joke...that will be us some day...two old fogies cruising around on a 3-wheeler.  Kevin wouldn't even try it, even though he really wanted to ride. I'm wondering if it was the stubborn little kid philosophy, "If I can't ride MY bike, I don't want to ride anything at all" (add a little stomping of the foot while this is said).

Late July, Kevin had a dream that he was riding my Dad's bike.  I quickly asked, "Does this mean you are willing to give it a try?" Yes, he was. My very generous father gave up his ride for Kevin's benefit.  Switching from a two-wheeler to a three-wheeler definitely takes some adjustment. The first few trips were a bit of a white knuckle experience (at least from my perspective). But Kevin has figured it out and now makes the weekly Tuesday night trips to Rockton for burgers and takes it to work most days. Even Kailey got to go one week.

As we moved into August, the travel slowed down and work has taken center stage once again.  Demands of the job have pushed into longer work days.  That bothers me a bit.  We both love our jobs but we were both all about work before Kevin's diagnosis.  I want to remember that life is more than work...that family and friends and fun need a strong presence.  (I write that statement but still have feelings of guilt that I should be doing school work right now instead of writing this post.) It's one of those balance things that we struggle with.

Kevin still continues his Avastin treatments every two weeks. Except for wearing him out the first few days after treatment, he hasn't really had any side effects.  The actual infusion is only 30 minutes so we are fortunate.  Although, one appointment did stretch into 2 hours as he waited for the drugs to be delivered from LaCrosse to Onalaska.  Still not sure what the whole story is behind that but someone didn't get a gold star on ordering meds that day.

Kevin's health remained quite steady over the summer which allowed us to still go and do, just at a different pace with some limitations. Kevin has been on steroids since his diagnosis in December.  At his last Mayo appointment in July, he was told he could try to wean himself off the steroids if he felt up to it.  We talked about it at length. Kevin was tired of the side effects, especially the moon face and weight gain. I had also read how steroid myopathy can occur and I wondered if he could build up his muscles again if he were off the steroids.

We decided to start the gradual process of decreasing the dosage. Of course, that brought on new problems like achy muscles and cramps.  I had read that magnesium helps with muscles and joints so he started that supplement.  Unfortunately, as the steroid dose decreased, Kevin's left side seemed to lose functionality as well.  His walking has become laborious. (A friend gave me that word and it seems so fitting. It means requiring considerable time and effort. But it also sounds honorable, which is fitting.  I know how hard he works at something we take for granted).

After getting down to 1mg of the steroid, we realized getting off the steroids isn't feasible. The tradeoff is too great.  He has now increased his dosage once again (to where it was before) and feels like he has noticed improvement.  However, I know Kevin is not back to where he was in July. He often gets frustrated with all the things he can't do.

That frustration hits both of us.  He cannot do what he wants to do and I'm either not strong enough or smart enough to do it either.  Last Thursday was a good example.  We were both tired after work but I still wanted to get the lawn mowed after supper and dishes were done.  The lawn mower is not exactly my friend.  I don't mind mowing but this mower hasn't really cooperated this summer. Kevin had an infusion that morning and was going to rest a bit in his chair. But when I tried to start the mower, the pull cord (probably incorrect terminology) was stuck.  I was mad and almost in tears.  I had broke the lawn mower.  Instead of getting a chance to rest, I had to bug Kevin to help me.  As he made his way outside I pulled out screw drivers and found him a place to sit.  Not being able to maneuver the mower and really get down and look at it made Kevin mad.  Not being able to start the mower made me mad.  We weren't mad at each other, just mad about the situation.  It wasn't exactly a pretty sight.

However, he moved this and turned that and the pull cord released (without the use of any screw drivers).  Then he pulled and pulled, and I pulled and pulled, with no luck.  Thankfully our neighbor saw our struggles and came to the rescue.  ONE pull and it started! Woohoo! The whole day had just been a bit too much for me so I had to say a quick thank you and get mowing before the tears started.

Thankfully, we know a guy who fixes and sells lawnmowers (my dad).  We visited him tonight with a truck...

As always, we have a lot to be thankful for:

• a freshly mown lawn
• a working lawn mower
• a beautiful day
• helpful neighbors
• jobs we enjoy
• co-workers who go above and beyond to be team players and make it happen
• loving and giving parents
• doctors and nurses and medicines
• cards that let us know you are thinking of us and praying for us
• our friends and our children's friends who make us laugh
• frustrations which help us grow and appreciate

"Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy spirit, whom he has given us."

Romans 5:3-5

Scan Day

Those of you who have dealt with this cancer thing in your life, or your loved one's life, know that your world rotates around scan day...in our case MRI day.  Once the date is scheduled, it is implanted in your brain.  Life keeps happening but that date lingers.  There's anticipation because you know you will get answers, but also dread because you might not like those answers.

At Kevin's last scan in late May, the news wasn't good, but we were expecting it.  His symptoms had us prepared.  Today, I really had no idea what to expect.  In my opinion, Kevin hadn't gotten any worse.  On the other hand, Kevin thought he felt worse and was apprehensive about today.

After our last visit to Mayo, we had made the decision to have all future MRIs scheduled at Rochester so we could see Dr. Uhm the same day and avoid the runaround getting his opinion.

The first half of the day, things were going our way.  I met Kevin at his work at 10:00, had an uneventful drive, found a fantastic parking space in the ramp, and located the lab area without a hitch. We were probably almost 45 minutes ahead of his scheduled lab time but they took him in early anyway.  The MRI wasn't scheduled until 12:55 but we decided to try our luck again and see if he might get in early.  Luck was on our side.  He went back about 30 minutes ahead of schedule.  Woohoo! That meant we got to eat lunch!  I learned my lesson this time...DO NOT look at magazines while waiting for Kev to get out of the MRI.  They are full of pictures of food and it is torture on a grumbling stomach.

For those familiar with Rochester, we walked a few blocks from Mayo to Newt's to grab a burger. They have been voted #1 burgers in Rochester for the past several years.  It was an easy walk, good food, and I'm glad we gave it a try.  I will admit, I've been pretty spoiled my whole life and taken many things for granted.  For example, as we searched for Newt's, we discovered that it was an upstairs restaurant.  Accessing it meant walking up a long set of metal stairs outside the building. Until Kevin's situation opened my eyes, I would not have thought twice and just cruised on up the stairs.  Today I thought, I wonder how many people cannot eat here because they cannot climb the stairs. I wonder if we wanted to eat here again in the future if Kevin would be capable of the climb. Okay, let's be honest, I also wondered how many people had a few too many beers and fell down the stairs.

We were not scheduled to see the doctor until 4:00 so we had time to kill.  We enjoyed the beautiful day with a leisurely walk back, stopping to relax at a few benches along the way.  As usual, I was trying to make conversation, and thinking about the possibility of finding ice cream. Kevin, in contrast, was becoming more quiet and withdrawn.  At close to 3:00 we decided to press our luck and check in early.  Maybe there was a cancellation. Maybe they were ahead of schedule (I know you are chuckling at that one).  When Kevin gave his information at the desk, the lady responded, "You know your early for your appointment."  Kevin quipped, "I didn't have enough time to go home and come back so I thought I'd hang out here."

Kevin proceeded to nap.  With a full tummy, I could look at magazines again.  I tried to doze, but I was afraid we would both be sleeping and miss them calling our name.  I would nod off and then pop up to look at the clock...three whole minutes had passed.  Repeat. Repeat. Finally I gave up.  I was flabbergasted when Kevin woke up at exactly 4:00.  I looked at him.  "How did you do that?!?"

At 4:15 they called us back.  So much for the luck from the morning.  They did all that fun height/weight/blood pressure stuff and then left us to wait for the doctor.  And wait.  And wait. When you are expecting bad news, you just want to get it over with. Meanwhile, we could hear nurses and assistants leaving.  "Have a good night."  What if they forgot us in here?  At 4:45 I opened the door to investigate.  I heard Dr. Uhm's voice so I knew he hadn't left for the night.

At 5:00, Samantha, a nurse practitioner came in.  "I've just had a very long conversation with Dr. Uhm and I'm here to discuss your results."  She must have seen the look on my face because she commented about not seeing Dr. Uhm.  Me, being always so blunt, said "He is the whole reason we came here."  She said she was more than happy to have him come in at the end to answer any of our questions.

Contrary to what we expected, the MRI showed substantial improvement.  The tumor had shrunk! Admittedly, I was still doubtful.  I had read that the infusion Kevin was receiving, Avastin, could cause scans to appear better even if they weren't.  Samantha agreed with what I had read but assured us that the scans showed improvement in both the enhancement view and swelling view. I wish I had a picture to share of the comparison between the May MRI and today's scan. They are clearly different. There were a few brief moments where I believe Kevin was so overcome with relief that he was trying to hold it together in order to comprehend everything she was saying.  Understandably so.

The plan is to continue on the Avastin treatments every two weeks and return for an MRI in six to eight weeks.  If Kevin should have more pressing issues with excessive tiredness, an increase in blood pressure (side effect of Avastin) or negative changes in lab results, they could change the schedule to once every three weeks.  This would allow more time for his body to recover in between treatments.

By the way, we didn't have Dr. Uhm come in to see us.  Samantha was very thorough in her explanations and answered all of our questions.

So today we are thankful for:

• Another beautiful day.
• Remarkable health care facilities around the country that help people find answers.
• A shrunken tumor!
• The many people who are praying for us.
• Answered prayers.

This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us--whatever we ask--we know that we have what we asked of him. 1 John 5:14-15

New Normal

One would think that since I was done with the school year that I would have more time to write updates.  Yet, this is my first of the summer and it is mid July.  Actually, I've written more than one blog post in my mind while weeding in the garden.  The words just never made it in to writing.

For the past five weeks or so, Kevin's health seems to have "stabilized" and we have become fairly comfortable with the new normal.  To be quite honest, Kevin's rapid decline at the end of May had me (and I believe a few others) wondering if he would make it through the summer.  Thankfully, perhaps due to his current treatment, Kevin made some slight improvements and has maintained that status for several weeks.

Infusion is via IV. He's holding a Pepsi

Currently, Kevin receives an infusion of Avastin every two weeks.  Initially the infusion took an hour and a half but they have reduced that time to thirty minutes since he has not had any negative reactions. Generally, by the time he has labs, sees the doctor, meds are ordered and the infusion is completed, he misses about a half day of work. According to Kevin, the treatments wipe him out a bit for the first few days.  He still goes to work but usually hits the recliner as soon as he gets home.  As the next treatment time gets closer, he thinks his left side starts feeling more numb again.

Quote from treatment room

This drug has not shown to increase life span but improve the quality of life.  That improvement in quality seems true for Kevin.  In May, ascending/descending stairs was not something I wanted him to try solo.  This was stressful as we have steps to enter our house as well as an upstairs bedroom. Now, depending on the stairs and if there is a rail, he's doing them on his own.  I also believe he's getting used to this new normal and what he can and cannot do.  That doesn't always mean he's happy about his current physical condition, and frustration does set in at times, but he's figuring it out.

What I personally struggle with is the mental/behavioral side of things.  When Kevin's just not happy or even angry, there's just no way to narrow down the cause. Am I doing something wrong? Does he just not feel good? Is it the steroids? Is it the tumor messing with his brain? All of the above? With social media it's easy to paint the picture that everyone is happy and smiles all of the time. Thank goodness no one is sharing the video action behind that picture!

Those who follow me on Facebook know we've been busy.  Once we knew what Kevin felt able to do, we said, "Let's do it while we can."  In mid-June we went with friends in a motor home to the Michigan Nascar race.  Luckily, the kids were able to come too.  Allstate Peterbilt sponsored a car in the race so the eight of us were able to get "hot passes" which gave us full access to the garages and pits. Lots of good food and laughter.

Missing John, Kate and Adam on this pic

We have had multiple family reunions as well.  They seem to take on a new meaning in these circumstances.

I'm going to go off on a bit of a rant here but I know this is a reminder for me too.  Kevin has had a few incidents where his weak left side and instability have made strangers notice.  The immediate assumption is that he's had too much to drink.  What if they really knew that the team effort to get Kevin down safely out of the steep grandstands at the races had nothing to do with drinking? Or that the knocked over garbage can in the lobby of the hotel was truly a gallant effort by Kevin to help carry bags out to the car, not the unsteady result of a drunken stupor from the night before. It makes me mad, but I have to take a deep breath and ask myself, "How many times have you made assumptions like that?" Lots.  Guilty.  I need to remind myself that people have stories that I know nothing about.

Devils Tower

Over the 4th, the four of us traveled West to Devils Tower, Yellowstone, and the Grand Tetons.  We rented a cabin in Wyoming, close to the Montana border, and enjoyed the beautiful sites of God's creation.  I've shared with others already that we felt quite "off the grid".  At the cabin there was no tv, no radio, and no cell phone service.  When you hit the seek button on the van radio, it would find one scratchy station.  Generally, I'm not a fan of being glued to technology, but we quickly realized how dependent we've become.  There are many times where we would have liked to have known the weather or directions or general news stories or even when Old Faithful was going to spew.

Obviously we didn't hike any of the trails so it felt like a lot of "seat time" but it was worth it.  I kept thinking of others who haven't made that trip and hoping they get the chance. We all agreed, as we passed the state line into Minnesota coming home, that we preferred the green rolling hills and productive acres of crops of the Midwest.

Grand Tetons

With this "new normal" we sometimes forget the circumstances (which I don't think is necessarily a bad thing).  But then I need to remind myself to pay attention, enjoy this moment, because it may be the last time you do this together. It sounds awful but shouldn't we ALL be living our lives that way? Instead, we often think, "There's always next time...or next year...or tomorrow."

These past several weeks, the health of family and friends has been more in the forefront of our minds than our current situation.  We are hoping that the patients and the caregivers are adjusting to their new normals and that this is just a bump in the road for them.

As always, we continue to be thankful...

• For opportunities. Every day on our last vacation I thanked God for the opportunity to have those experiences together.  Although there were a heck of a lot of people in Yellowstone (a million people tour Yellowstone in the month of July), not everyone gets that opportunity.
• For healing. May all of those who have had health setbacks continue to heal.
• For vacation time.  Use it!
• For Kailey's Kwik Trip employers allowing her to take off as needed since she doesn't really have vacation.
• For the garden.  I often think, "Is this really how I should be spending my time?" But I appreciate the sense of accomplishment when pulling weeds and harvesting vegetables. 
• For people helping people.
• For the continued prayers.  It is so heartwarming to have people come up to us and tell us they continue to pray for us.  

Be wise in the way you act toward outsiders; make the most of every opportunity.

Colossians 4:5