The Beginning of the End

I've been trying to figure out how to begin this post.  When Dan was first diagnosed, the blog was a way to get as much information out to as many people as efficiently as possible.  While it was emotional to tell the story, I had a purpose.  This time it seems as if there is just emotion.  Yes, there is some medical jargon and details to include, but you know the history and followed the journey.  It is with such sadness that I share with you we have begun to prepare for the end of the journey.

As you know from my prior post, things were looking stable and we had been given the okay to go 3 months between scans, putting the next tests in July. It seemed like we could relax, breathe a little, and make some plans for the summer.  After all, if things didn't look great at the end of July, we still may have options, or at the least, more time..right?  Then, the week before Memorial Day, Dan started having reoccurring headaches. He was tired, sleeping more, and I noticed that he was having some minor balance issues. But when you have a brain tumor, the smallest change causes alarm. Dan made an appointment for the following week to check in with his radiation oncologist. During Memorial Day weekend Dan had an episode where he became light headed, which really scared me. I was seeing the same symptoms he had experienced right before his initial diagnosis in 2012.  After a second scare, we called this doctor who ordered an MRI.  The results of the MRI were inconclusive. The tumor showed an increase of inflammation in the brain, with the left hemisphere crossing into the right hemisphere even farther.  There was also what appeared to be a large white ring around the tumor. What the doctor couldn't tell is if the tumor was growing, or if healthy tissue around the tumor had been damaged by the radiation. A second test was ordered, essentially a brain PET scan (it has a specific name, but I can't recall it).  The doctor called the next day to let us know that the PET showed the tumor was active and growing.  He scheduled a follow up appointment for us on Wed, June 4 to discuss what, if any, treatment options we had.  We also had an appointment with the neurosurgeon scheduled for us that same day. In the meantime, Dan was put on a heavy dose of steroids to help the symptoms.

Some of you know that June 4 is our anniversary.  This year, it was our 10 year.  We had planned to travel to Napa Valley to celebrate, but given the news and Dan's issues, decided to cancel the trip with hopes to reschedule later in the summer.  We began the day meeting with the neurosurgeon who told us surgery is not an option. We had known that as the location of the tumor is in a very sensitive and difficult area to reach.  What we didn't expect to hear was that he didn't believe radiating the tumor would be of any use.  It was crushing.  Dan and I both knew that at some point there would be no more that could be done, but we always thought it was farther out.  The analogy that I used with some friends is that we knew we couldn't win the war, but we thought we had a couple more battles ahead of us.  We had several hours between appointments that day and those hours were filled with such tears and pain.  By the time we met with Dan's oncologist, Dr. Smith, we were wrecked.  Dr. Smith confirmed that after two failed tries of radiation, coupled with the fact that there was some hemorrhaging of the tumor on the last try, it wasn't a viable option.  He recommended that we make the most of Dan's time, preserve some quality of life, and allow him to go out with peace and dignity.  When Dan pressed him for an estimate of time left, Dr. Smith said 2 months. I felt like someone sucked all the air out of the room.  He recommended that we prepare for hospice and begin to get things in order.

Our Wedding Day   June 4, 2004

Fast forward to today, a week later, and it still seems unreal.  It feels like are moving in slow motion, but the time around us is speeding by.  The week has been filled with appointments, visits, phone calls, emails, and as much time together as we can.  Dan is transitioning out of the office and to long term disability. I am trying to figure out how to get in a few hours at the office, we've begun the hospice care, and of course there is Jack. The most heartbreaking piece of this is Jack.  No kid deserves to lose a parent. We have talked to him, through the advisement of his counselor, and it will be something he struggles with through out his life. For the immediate, we are keeping his schedule as normal as we can (he started swim team this week) and surrounding him with lots of love. Thankfully, we have an amazing support system of family and friends.

I know there are lots more details that I could give, but this is all I have the energy for right now.  I will continue to blog, more frequently, and keep you all updated.  As of now, Dan is doing well.  His energy and appetite are good. He's noticing a little more numbness in his legs and feet, so his walking is  a little more uneven right now.  But, he's been able to do normal things, like mow the lawn and spend some time in the office.  I do want you all to know that we have done everything possible for Dan. This decision to begin hospice wasn't taken lightly, and multiple doctors were consulted. If we truly believed there was a treatment out there that wouldn't compromise his quality of life, we would do it.  No one knows for certain how much time we have.  We pray everyday for a miracle….it doesn't hurt to ask, right?

Please know that we love and appreciate you all so very much.  We ask that you pray for our family, in whatever manor of prayer you believe in, for whatever speaks to your heart.

More to come soon……..

Jen