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