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