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