Toppling over in vunlerability

• Wednesday, August 26, 2009 1:20 AM, PDT
These days it is hard to find the time to write, yet I do want to keep everyone current with how Michael is doing. Last week we welcomed the hospice staff into our home. Michael was initially unsure what these people were going to do for us, but he seems to understand that they provide assurance during this difficult time. From my point of view they are providing us with a sense of security, coupled with concrete assistance during this final phase.

Michael's days are spent mostly in bed, as he lacks the needed energy it takes to move about. His walking is now benefited by a cane, which greatly assists him with the needed balance to move about independently. We do have to stand guard, as he can unexpectedly find himself toppling over. We are blessed that Michael is still able to communicate, and enjoy his meals and soft music throughout the day. His short term memory is definitely compromised, yet he has maintained his great sense of humor.

And though he finds himself grieving the loss of prior abilities, he spends most of the day with a smile on his face. Throughout the day Barbara and I do our best to smother him with our love. This unfortunate journey can easily be described as cruel, and all of us have our moments of unleashed pain. Yet throughout each day I make sure that I spend time just lying still, holding Michael in my arms.

For me it is most difficult when I need to walk out the front door of our home and face a world of people who don't know how we are all suffering. Very quickly I find myself feeling exposed, and raw with emotion. It draws forth a vulnerability I am not yet ready to reveal.

I am learning that loss is not always an abrupt event. For some, it is gradual. For us, it walks a delicate line, giving us a glimpse at what we are to lose. Yet at the same time reminding us what we still have. Each other.

Dan

Hospice, a numbing time

• Monday, August 17, 2009 9:18 PM, PDT
Before I start, I want you to know that I am sitting here looking at a picture of Michael and me celebrating our wedding day, and I am so grateful for having him in my life.

The news here is not good. I know that many of you are waiting to hear about today's appointment, so I'm going to state it briefly, and hopefully, clearly. There are two types of views that we mainly focus on when looking at tumor growth. The first shows the most aggressive part, which is where the new tumor growth is appearing. As is the nature of these tumors, it is now moving from the right side of the brain, to the left side of the brain. There is significant growth in the left frontal lobe, and the tumor is expanding to the back of the brain as well. In the second view, we are able to see the actual tumor mass, which has doubled in size since the last MRI three months ago.

That is all that I want to say about the tumor itself. Our focus now is on what we can do to provide Michael the best quality of life with each day left. Tomorrow we meet with a hospice nurse to find out how they can assist us from this point forward.

I want to thank Craig for joining us at today's appointment. He is Michael's best friend, and he gives, unconditionally, whatever Michael needs. Tomorrow Barbara and Tessa will be back in town for a scheduled date to make chocolate chip cookies.

For all you voicing your concerns for us, I say thank you. If you have messages for us feel free to send them our way on this site, or to my email address. Please know that I am reading them, but will not be able to respond to each one individually. Yet I promise you I will be sure to share them all with Michael. Although he may not always be able to remember the details of each message, he will certainly retain the love that pours out to him. As for me, I am often numb. I am trying to allow myself time to feel and cry out, but mostly I am wanting to take in Michael's love, especially to hear his words while he has them.

Goodnight.

Dan

Twists and Turns

• Thursday, August 13, 2009 11:58 PM, PDT
Today I was able to speak with Michael's oncologist. He prescribed Decadron, a steroid, to offset what must be swelling from the tumor. Tonight Michael appears to be responding well, as he suddenly is doing better again. Last night was such a scare, and one that Michael does not remember.

I am learning each day that the next cannot be fully anticipated. This journey is filled with abrupt twists and turns.
It is doing the same with my emotions. I will try to breathe deep, and remind myself that the next day could bring a calm breeze back our way.

Dan

A Decline

• Thursday, August 13, 2009 11:58 PM, PDT
Today I was able to speak with Michael's oncologist. He prescribed Decadron, a steroid, to offset what must be swelling from the tumor. Tonight Michael appears to be responding well, as he suddenly is doing better again. Last night was such a scare, and one that Michael does not remember.

I am learning each day that the next cannot be fully anticipated. This journey is filled with abrupt twists and turns.
It is doing the same with my emotions. I will try to breathe deep, and remind myself that the next day could bring a calm breeze back our way.

Dan

• Wednesday, August 12, 2009 9:52 PM, PDT
I just wanted to send off a quick note to let everyone know that Michael has had a turn for the worse. In the last couple of days he has shown significant decline. He spent most of the day in bed, so it was a shock when I got him up to have dinner. He is unable to balance himself very well, and falls without my physical assistance. He is exhibiting a weakness on his left side of his body.

I have sent a message to his oncologist to seek further assistance.

I'm sorry this message is so straight forward. I'm trying my best not to fall apart in front of Michael, as I don't want to scare him. I'm afraid I'm losing him soon.

We appreciate you support and prayers.

Love. Dan

Groundhogs Day

• Thursday, August 6, 2009 12:52 PM, PDT
To our friends and family. Michael's symptoms and deficits are adding up quickly. He is in his final week of chemo, and it has taken quite a toll on him. His energy level has been significantly depleted. He sleeps most of the day, and wakes up confused. While some of these symptoms occurred during the last chemo cycle, they are much more significant this time around. I'm not sure how aware Michael is of the change at this point. I fully expected him to rebound next week as the chemo begins to exit his body.

To help you understand how daily life is for Michael, I'll make an irreverent reference to the movie "Groundhogs Day." Both Michael and I love this movie, and love Bill Murray's character. Each day the character wakes up to the same day repeating. At first he is alarmed, and frustrated with this dilemma, but in time he learns to adapt to it. Michael had previously reminded me about this film whenever we discussed the possible problems with memory loss. We laughed when thinking about what a refreshing outcome this could be. Each day would bring him a new opportunity to experience life anew, and each day he would not be responsible for the last. It still makes me laugh just thinking about this.

In Michael's daily reality he keeps waking from his naps thinking his day has just begun. He talks about getting up late for breakfast, and unless I can convince him, he goes up to the kitchen for another bowl of cereal. Dr. Peak tells us that the temporal lobe is that part of our brain that assists with time and date. This function is much more complex than we might think. For Michael, it has become very challenging to remember what day, or part of the day, it is.

In in spite of this, Michael still has his sense of humor. Last night I walked into the bedroom. Michael looked at me and said, "I don't know who you are, but you are welcome to join me."

There is an MRI scheduled for August 17th, which will help Dr. Peak and Mady advise us on the next step to take. I can't help but feel that continuing the chemo will not be the recommendation. I am clearly seeing what quality of life means with these tumors. The possible cure just sucks the life out of you.

I hope all of you are able to read between the lines, and through my humor. I need to find humor, and joy each day. Without these I would be falling apart, which would do nothing for Michael. Anticipatory grief cannot be avoided, but I will not be overtaken by it.

My favorite part of the day is when I lie in bed, holding Michael, and looks up with a beautiful smile. Nothing compares to it. What a gift.

Love to all. Dan