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