Finally...

Did you miss us?  We have not posted in nearly three weeks.  Why? Because we've been playing the waiting game. Those of you who know me know that I am not the most patient of persons so this last stretch has been a bit trying.

After our April 6 visit to Mayo in Rochester, Dr. Uhm wanted to see a follow up MRI on April 15. He was trying to determine if the change in Kevin's previous MRI was real tumor growth or pseudo progression caused by the radiation and chemo treatments. If you are interested in hearing Dr. Uhm's explanation of Glioblastoma and its treatment, check out this website.

The April 15 MRI (done at Gundersen in LaCrosse) left us with more questions than answers.  It appeared the tiny tumor in the front had not changed or could have possibly improved.  However, the other lower tumor appeared to have gotten larger. We left feeling quite confused by Dr. Kwong's explanation. As planned, the MRI results were being sent to Mayo so Dr. Uhm could give his opinion.

Much to our surprise, Dr. Conway, the radiation doctor from Gundersen called at 8:00pm on Monday night (you read that right--8 o'clock at NIGHT).  We were shocked.  Kevin is technically not Dr. Conway's patient any more since he is no longer receiving radiation.  We have always liked Dr. Conway and the pedestal we put him on had just risen a little higher with this phone call.  He took the time to explain the tests.  In his words, "I've been staring and staring at your MRI." It was easy to hear how much he cared.  Unfortunately, in his professional opinion, he was not seeing pseudo progression but tumor growth.  Hanging up the phone, our emotions were mixed.  Happy that we had a better understanding and a health care provider who cared so much. Yet disappointed with his news.

I know we were both holding out..."Let's see what Mayo has to say." Tuesday--nothing from Mayo. Wednesday--Kevin called and they said Dr. Uhm had been out of town. No wonder we hadn't heard from him.  Thursday--no word so I sent an email.  Friday--I called Mayo requesting Dr. Uhm call us with the MRI results.  Monday--I called again. No luck hearing anything so I sent another email Monday night.  You can imagine that it was a bit more demanding--nothing too bad--but I let them know that each day is precious and we couldn't waste time "spinning our wheels" with no interpretation of the MRI and no course of action for treatment.

Today I was back on the phone again.  I spoke with two different people pleading my case.  When you are a cancer patient, you cannot wait over 10 days for results.  Of course, they offered to leave another message, but they acknowledged that there was evidence of my other phone calls and emails so they could see that wasn't the answer.  My feeling of hopelessness, not knowing what else to do, mounted and erupted through tears.  I managed a "thank you" and hung up.

Guess who called the house tonight at 6:30pm??? Dr. Uhm!  Unfortunately, I was at a meeting so I was relying on Kevin to remember every last detail.  Poor guy.  Thankfully,  I checked the Mayo site and Dr. Uhm's report had already been transcribed so Kevin had that as a backup.  Here goes...

The MRI scan of April 15, 2016 shows slight further radiographic progression of the right corpus callosal and right parasagittal contrast enhancing lesion with a slight increase in the degree of surrounding vasogenic edema.  Yes, I cheated and copied that off the report.  No, I don't know what that means either.    I do recognize that edema means swelling.  Dr. Uhm believes there has been an increase in the swelling which is what could be causing the mobility issues with Kevin's left side.  Kevin has noticed an increased laziness or slowness in his left leg. This is affecting his coordination and is evident in his walk. Dr. Uhm is requesting that Kevin increase his steroid dosage to try to reduce the swelling.

Dr. Uhm had also requested that the tumor which was removed in December be tested for MGMT methylation.  The tumor was found to be methylated for the MGMT promoter.  This means the tumor is more likely to respond to radiation and chemo treatments.  Although that didn't necessarily seem to prove true after the initial treatment, Dr. Uhm would like to put Kevin back on the chemo drug Temodar.  As before, this comes in pill form.  We believe Kevin will take the pill for 5 days and then have 28 days off.  Dr. Uhm would like another MRI after that round of chemo.

Kevin did remember to ask how this would affect trial studies.  Tomorrow would mark 10 weeks out from his last chemo and radiation treatments and most clinical trials are looking for a 12 week break. After waiting this long, we hated to ruin possible chances for trials.  Dr. Uhm assured Kevin that Temodar wouldn't be as issue with the trials.

Finally...we once again have a plan.

So tonight we are thankful for:

• finally hearing from Dr. Uhm 
• having a course of treatment
• having doctors who care enough to call, even when their work day should have ended hours earlier
• the kind words, cards and prayers we continue to receive
• the family and friends who have gone out of their way to visit and spend time with us
• the people who continue to push us toward our faith for answers and hopefully a miracle

My son, pay attention to what I say;
Listen closely to my words.
Do not let them out of your sight,
keep them within your heart;
for they are life to those who find them,
and health to a man's whole body.
Proverbs 4:20-22

Second opinion

Another day of learning.

Last week, in our effort to seek more information, I called Mayo in Rochester to see if they would be willing to give Kevin a second opinion.  Let's be clear, not an opinion on the diagnosis, but where we are headed with treatments.  How exciting on Friday to receive the call from Mayo and get an appointment scheduled for Wednesday (today).

Of course, then the "fun" begins...answering Mayo's questions to get Kevin registered, having Gundersen assemble all of his records so we could take them to the appointment, and calling the insurance company to check on coverage.  Invariably, one phone call led to four more. In the end, not a big deal.  But those of you who know me, know that phone calls are stressful for me.  I can email a request with no issue.  But making that phone call, for some reason, is another story.

Kevin and I approached today's appointment in two very different ways.  I look forward to the appointment and become excited and energized by the anticipation.  Kevin, on the other hand, becomes worried about what to expect and what they might say (understandably so), which leads him to become quiet and short with others.  Try to picture the two of us in the car this morning:  Kevin driving with his serious, brow furrowed look.  Don't talk to me.  Then there's me almost bouncing around in the seat yapping about last night's elections trying to bring him out of his mood. What a pair.

Thanks to helpful advice from friends who have been to Mayo, and the fact that we left in the middle of the night (okay, okay it was a little before 5 a.m., not the middle of the night), we had no issues finding the Gonda Building at Mayo, parking in the ramp, and locating our check-in spot.  At 6:30 a.m., I think we were the first people on the 8th floor.  I wandered around, read brochures, and tried to look out the windows and compare with the map to figure out what buildings were around the hospital.  In contrast, Kevin sat quietly wishing he had a comfortable enough spot for a quick nap.

Mayo felt different to both of us.  Ironically, we described that "different" very differently. Kevin said he thought it felt very relaxed.  I thought the vastness of the buildings, along with the marble floors and art work all combined to make it feel like we were going some place important. People from all over the world travel for treatment at Mayo.  Yet, we are lucky enough to have such a prestigious place almost in our backyard. How can one not be grateful?

It doesn't take long for that quiet, empty place to come to life.  Others joined us in the waiting area.  The employees at the check-in desk were in their spots and ready to go at 7:00 a.m. on the dot.  Kevin was first in line.  After handing over his medical records, they printed his appointment schedule and instructions.  Lab work in the Charlton Building of Methodist Campus at 7:10.  Yep, a whole different building for the lab work.  After getting directions, Kevin and I gave each other a look like, "Okay, let's give it a whirl."

Down the hall, across the skywalk, down the elevator, oops, try again, down one more floor (there's a 1st floor and an L floor?), through the maze of halls to labs.  No problem, Kevin was checked in and seated by 7:09. We were amazed by the number of people.  At 7:00 in the morning there were over 35 people in the waiting area and more constantly in line.  Then came the next challenge, finding our way back to the Gonda building where we had started.  Clearly we were up for the challenge today because we made it back without a hitch.

Once Kevin had checked in again, they realized he hadn't completed all of the patient paperwork. You know, that mound of paper that killed three trees.  The one where they ask you if your grandmother's second cousin had diabetes or heart issues. We joked later that we hoped they don't try to jab him with a Measles, Mumps, Rubella shot since I don't have any clue what his vaccination history is. Sorry, dear.  Guess I should have lied and circled "Yes" instead of "Don't know."  My bad.

We had no clue what doctor we were seeing until they took us into the actual office and saw his various certificates hanging on the wall.  Dr. Joon Uhm (June like the month, and umm like you might say 20 times when you are giving a speech). If you are curious about what he looks and sounds like, here is a video he made back in 2009.  Although that was over 6 years ago, he still looks the same.

Dr. Uhm had reviewed Kevin's files and did a fantastic job of explaining and answering questions. He complimented the surgeon, saying he didn't think the surgery would have been done any better at Mayo.  He complimented the treatment given by Dr. Conway and Dr. Kwong so far.  As we have known, the initial treatment of surgery, followed by radiation and chemo, is standard procedure across the country.  Dr. Uhm also emphasized what we had come to realize.  It is not humanly possible for a general oncologist to know everything about every kind of cancer. As an example, Dr. Uhm said that even though he is an oncologist, he would not know the best treatment methods for a breast cancer patient.  That is not his area of specialty.

One of the key terms Dr. Uhm described was Pseudo Progression.  Often times, the first MRI after treatment actually looks worse due to debris left behind by the chemo and radiation.  This change in the scan is called pseudo progression.  Dr. Uhm felt it is too early to tell if the scan truly showed new growth or if the changes reflected the pseudo progression.  How will we know?  Have another scan.

It is typical to have another scan a month later.  Although it feels like we just went through this, this is actually the third week since Kevin's last scan.  These doctors can move pretty quickly.  Dr. Uhm said he was going to notify Dr. Kwong in LaCrosse that he recommended a follow-up scan next week.  Before we got home, Gundersen was calling Kevin scheduling an MRI for next Friday, April 15 at 7:00 a.m.

Is there a chance the next scan could still have pseudo progression?  Yes.  Is there a chance the next scan would verify that there truly was new growth?  Yes.  However, right now, I could tell that Kevin felt a sense of relief.  Dr. Uhm gave us the impression that he wasn't too concerned with the March 18 scan.  He needs more information.

Clinical trials.  Many of the clinical trials require a 12 week waiting period after radiation.  Something in our records must have indicated we were questioning the 12 week waiting period so Dr. Uhm made it a point to clarify that concept right away.  For a clinical trial to be accurate, the patients' results cannot be affected by previous treatments they had.  Therefore, the 12 weeks should clear the body of those treatments and allow for more accurate testing.  Personally, I already understood that concept but couldn't see how we could wait 12 weeks doing nothing when the tumors were already growing back.  Ironically, it has already been 7 weeks today since Kevin finished his treatments.

Dr. Uhm also explained Mayo's clinical trials.  One of their trials is very similar to Duke's only Mayo is using the measles virus (rather than polio).  Based on the location of Kevin's tumor, he would not qualify for this trial.  The other trial involves surgery to remove the tumor, grinding up the tumor to create its own personalized vaccine and then injecting the vaccine back into the brain. Sounds crazy doesn't it?  This trial requires a really big tumor.  If Kevin were ever to qualify, he would be in very bad shape because the size of the tumor would be causing major problems.

As for the drug Avastin, I am glad we waited.  Dr. Uhm had confirmed what I thought I had interpreted from research.  The drug doesn't really extend life but it can improve the quality of life. He described it as a major weapon to use as late as possible.

Beyond the scan, Dr. Uhm is also going to do some checking on Kevin's tumor to see if it is MGMT Methylated.  MGMT is a gene within the tumor and it can help to guide therapy based on how the gene has responded to treatment.  Let's get real...I don't really know what I'm saying here and I've got to do some more reading to try and make some sense of it.


It is so hard to believe that four months ago today, December 6, this journey began.  And today we were presented more opportunities to be thankful.

• Thankful for so many quality health care facilities so close by. Many travel for hours to get to LaCrosse and days to get to Mayo.  
• Thankful for the technology that allows us to research, and learn and ask questions.
• Thankful for those who specialize in treatment areas like brain cancer.  
• Thankful for the opportunity to spend the day together.  Although we were warned the appointment could possibly take all day or even go into the next day, it didn't. So we had a little time for fun.
• Thankful for the time to visit with friends in Rochester and Lewiston.
• Thankful for the prayers.  Today, we felt God gave us a sense of relief and understanding.
• Thankful for the texts and phone calls and cards.
• But most of all, thankful for one more day.

Do not be anxious about anything, 

but in everything, by prayer and petition, 

with thanksgiving, present your requests to God.  

And the peace of God, which transcends all understanding, 

will guard your hearts and your minds in Christ Jesus.

Philippians 4: 6-7.