January 18, 1962 - September 13, 2009

Together, in care free times.

The gift of love and grief

Happy Anniversary Dear. In celebration of this occasion, I am sharing our wedding vows.


"Michael. Thank you for the gift of your love. Sometimes the best gifts in life are those that are unexpected, and I honestly had given up the expectation that I would find someone like you. Thank you for noticing me in that crowded bar, and thank you for not running away when you saw that I drove a mini-van.

I love you with all of my heart. I am moved by the sweetness your eyes convey to me. I love the joy in your smile; I can't help but smile in return. And most importantly, I feel the sincerity of your love for me by your embrace.

Today I choose to commit myself to you as my husband. I vow to cherish each day that we are given together as a blessing. I vow to learn from your patience, and to share with you my strength. I promise to meet all challenges, and celebrate all joys, with you hand in hand. My love for you is eternal."

-Dan


"Dan. I take pride in joining my life to yours today in the presence of our family and friends. Before them, I vow to take you as my husband from this day forward, for better or worse, for richer or poorer, in sickness and in health, to love and to cherish you, with all of my heart.

Our paths through life have crossed, by destiny or chance I do not know, but now they have merged into one. Side by side, step by step, we will continue on together stronger than before. I love you, and I promise to be there for you, and for our family, for as long as God grants us. Whatever the future may hold, I hope that in the reflection of the sun off the sea, or light glimmering off the rings that we will exchange, you will always see and remember the joy and love we shared today."

-Michael


Tonight I was reflecting with Arianne, that although this past month has been one of considerable grief with the loss of Michael, all the days that led to his leaving this earth were of pure joy and beauty. I am comforted in knowing that we lived out our love and time together fully in the present. We embraced the joys and the tears each day, never forgetting to proclaim our love for each other. And while I truly miss Michael's physical embrace, I find myself held together by his caring heart.

Michael is perhaps the most peaceful man I have had the good fortune to meet. He provided me with such calm, and with such awe. A boyish grin, with a sparkle in his eyes, Michael quickly reigned me in, and I was putty in his hands.

In these past few weeks I have been very self-indulgent. I have spent much time alone in thought and meditation. I am learning the practice of grieving mindfully. My guide is a helpful book by Sameet M. Kumar, Ph.D. It is a Buddhist approach to coping with loss. In this book S. Kumar says that "grieving mindfully can be understood as being consciously aware of the intense pain of love after loss. Grieving mindfully is the process of using your emotional vulnerability not to suffer greater distress, or to intensify your pain, but to redirect this pain toward your growth as a human being."

Hence forth, I begin my practice of meditating mindfully. I seek to be open to all of my thoughts and feelings. I hope to find comfort in their familiarity. I expect to carry grief with me for some time forward, yet in time, to recognize the life giving gifts that grief will teach me.

It was exactly one year ago today, that Michael and I had the honor of confirming our lives as One, with our exchanging of vows and rings. We knew there were no certainties, yet we chose to take the great leap of faith. Michael's favorite part of the ceremony was the Sand Ceremony, where we combined our individual colors of sand into one vase, forming a lovely pattern. This pattern was symbolic of how our lives had become in-twined. One day we came home to find that the sand had somehow been knocked over, or shaken. And while you could still make out the prior pattern, the sand was further blended. Our initial reaction was one of disappointment, yet by stepping back and reflecting on the new image, we accepted that like our own life as a couple, the differences were becoming less remarkable, and there was comfort in the blended outcome.

Clearly this blending of lives, of souls, tends to come with time and age. In our case the universe, God, must have needed a flour sifter to help us blend at a quicker pace. Such was our destiny and our fate.

Will I cry with my loss today? Yes. But I will also remind myself that I carry Michael's love within me, and he soars with mine. I can no longer separate the different particles which originated from him, and those originating with me. I am changed, I hope all of you realize that you too are changed.

We cannot grieve unless we have loved. At some point today, raise a glass to the love in your life, tell the people you love how much you are changed, simply because they love you. Treasure this gift, like the Tree of Life. The Tree of Life is only able to grow and offer us immortality if it is rooted in bitter waters. Draw strength from your relationships, especially during bitter times. Remember that this love will nourish you to grow. Let it feed you, and in time you will feel yourself branching out towards the heavens. Carry this image within you, trust it when difficult times revisit.

Our family draws strength from all of you. I will keep this site open for all who want to share their thoughts, yet this will be my last journal entry. I plan to keep writing, yet feel it is time to begin writing from a new place. I thank all of you for traveling with us on this amazing and heartbreaking journey. I never felt alone, nor did Michael. I'm not sure what direction my wiriting will take, but in time you are all welcome to find me, and share a part of yourself with me.

Love. Dan

http://daninrealtime.blogspot.com/

My constant companion...Pain

Why?
Originally uploaded by Lacking Focus

Saturday was Michael's Celebration of life. I couldn't be more please with the collective love and energy that brought Michael's closest friends together to make this day happen. There were people there from the various stops along Michael's life path, and there were many who came that had never met Michael, but who wanted to pay tribute to the man who captured my heart in such a meaningful way.

I certainly felt a spirit of connection between all of us in the chapel that day, and hope that this connection will keep us strong in the coming days, weeks and years that lie ahead of us. I know that I will be looking to each of you in some small way to keep my spirits up, to remind me of Michael's endless stories, and to share with me a sense of his joy.

Right know I am in so much pain. I physically ache for the lack of Michael's presence. I want so badly to be awakened from this horrible dream, and to have Michael back in my arms. I am lost. I know that time has to take it's course, and that time is supposed to make me heal. Yet, I'm not so sure I want to be healed. This pain is real because my love and desire for Michael is real. I don't want to give up that love and desire, so is pain to be my new companion?

I suppose pain has been there all along. Pain has entered my life many times during these past 50 years. Pain most notably made itself known to me on October 16, 2007. That's the day I howled at the morning sky, I cursed the winds, and I unearthed a dark gloom within me never before recognized. On the morning of September 13th that dark gloom found it's way back into my consciousness, and lodged itself in my heart. I feel it's weight. I am almost doubled over by it's volume, not sure how to completely dislodge it from my chest.

Pain such as this, I did not welcome in. Pain such as this, it has me in it's grip. Yet pain such as this, I cannot say is completely unfamiliar. I have met this pain before, and have seen it around me. I saw this pain in others on Saturday, and I have seen it in others who also walk in grief.

In this past week I have felt like a ghost, not fully here, not fully there. I'm not even sure I want others to notice me as I move about my world. I have a need to be lost, to wander without a map, a plan, or a purpose. Yet I cannot fully indulge in this desire, as I am attached to this world. I am attached to you. I am attached to my kids. I am attached to the many people who love me, who loved Michael, and to the many people who don't even know us, but perhaps crossed our paths in everyday life.

As I have been writing this I have been aware of some distant music playing in the background. At first I thought it was coming from Arianne's room, then perhaps a neighbor's home. Just know I realized the music is far too familiar. It is one of Michael's favorite pieces, Songs from A Secret Garden. I had this CD playing constantly during Michael's final hours. I must have somehow accidentally turned the player on without notice.

"Accident?" "Purpose-full?"

As I turn up the volume, and beautiful music fills my room, my constant companion, "Pain," is being soothed. Tears help Pain to be less intrusive.

Earlier I asked Michael to return to me. I didn't want to continue without him, it was too painful. Maybe Michael's love, Michael's eyes, Michael's smile, Michael's joy, Michael's arms will ease me through this. Maybe he can ease us all through this.

Yesterday I fell asleep on the living room couch, and for a split second I dreamed Michael. He stood there before me with a sly grin on his face, and his eyes flickering with humor, and then he was gone. This split second brought me a sense of peace, and for the first time, a smile on my face .

Love. Dan

Michael's Memorial

Our dear friend David has written detailed information about Michael's memorial service, which I have included. I hope to see many of you on Saturday.

Please know that I, and Michael's family, greatly appreciate the healing words of support that we continue to receive. It is all of you who are keeping me afloat.

With all my love.

Dan

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dear Family and Friends of Mike:

Mike's Memorial Service will take place this Saturday, 19 September, from 2-4pm, at 351 Buena Vista Ave. East, San Francisco 94117.

A mapquest link: http://www.mapquest.com/maps?city=San+Francisco&state=CA&address=351+Buena+Vista+East+%23703e+&zipcode=94117.

The Service is in the complex where David Takacs (a friend of Mike's) lives. His telephone numbers are 415.606.8217 (cell) and 415.487.1017 (home). Please contact him if you need any helpful information.

This may be the only neighborhood in San Francisco where parking is plentiful. When you arrive, someone will be at the door to direct you to the Chapel. Note that it will likely be cooler in San Francisco than wherever you've been coming from, and the chapel is also cool.

For those who wish to make a donation in Mike’s name, please do so to the National Brain Tumor Society. See http://www.braintumor.org/Donate/.

Hotels: In the event that you are staying the night, here are the names and contact info for a few convenient, affordable (by SF standards!) hotels:

The Metro Hotel, 319 Divisidero St., 94117, 415.861.5364, http://www.metrohotelsf.com/
The CarlHotel, 198 Carl St. 94117; 415.661.5697, http://carlhotel.ypguides.net/
Le Grenier Bed & Breakfast, 347 Noe Street 94114, 415.964.4748
The Parker Guest House, 888.520.7275, 520 Church St. 94114 http://www.parkerguesthouse.com/rooms.html
Travelodge Central, 1707 Market St., 415.621.6775, http://www.sanfranciscocentralhotel.com/

Directions:

From the North Bay: Note that the 19th St. Off ramp is closed until noon on Saturday. Instead:
From the right-most toll booth off the bridge, make your immediate right onto Merchant Ave.
Right on Lincoln Blvd.
First left (note: Not the first left you come to, which is one way the wrong way) on Kobbe.
First right onto Washington.
Follow Washingtonthrough the Presidio.
When Washingtonends, merge right onto Arguello.
At the stop sign (golf course on right), continue on Arguello for another mile or so until Arguello dead ends at Golden GatePark.
Left on Fulton.
First right, on Stanyan.
At the second light (major intersection), left on Oak Street.
In a little less than a mile, the Panhandle (green space on your left) ends. At that light, you make a right onto Baker.
Follow Baker up the hill. It turns into Buena Vista East. Take Buena Vista East up until you see a huge pink building. That's your destination.

From the East Bay: Give yourself extra time for weekend traffic on the Bay Bridge
After the BayBridge, go several exits until the exit to "Golden Gate Bridge/101." Exit there.
Stay in your left lane.
The off ramp will eventually dump you onto Octavia Blvd.
Take Octavia until it ends. It will force you to take a left onto Fell St.
Take Fell St.for about a mile. Cross Divisidero (two gas stations on left).
Then take your second left, onto Baker Street. (DMV on left.)
Follow Baker up the hill. It turns into Buena Vista East. Take Buena Vista East up until you see a huge pink building. That's your destination.

From the SouthBay
Take 280 until the highway splits right before you reach the city.
Take the right fork, towards "80/Bay Bridge."
Exit at San Jose. Avenue.
Stay in your left lane.
Immediately after the light, make a left onto Dolores.
Stay on Dolores about 1.5-2 miles. After Dolores Park, left on 18th Street.
Stay on Castro about 5 blocks, and make a right on Castro Street.
Stay on Castro about a mile. Left on 14th Street.
Take 14th to the very top of the hill. Right on Buena Vista Terrace.
At the stop sign, left on Buena Vista East. Take Buena Vista East up until you see a huge pink building. That's your destination.

From SFO:
Supershuttle (the blue and yellow vans): Tell them "Buena VistaPark, between the Castro and the Haight."
You can also take BART (Bay Area Rapid Transit) to 16th Street and then take a cab. Supershuttle is easier and about as cheap.
If driving, follow directions above from SouthBay.

Public Transit:
MUNI to Church Street.
At the base of 14th Street, in front of the liquor store, you can catch the 37 bus. Tell the Bus Driver you're stopping at Park Hill. Warning: The bus runs only about once/half hour.

We look forward to seeing you.

The Journey is the Reward

the journey is the reward
Originally uploaded by Toni_V

"To love for the sake of being loved is human,
but to love for the sake of loving is angelic"

~Alphonse de Lamartine


"Say not in grief 'he is no more'

but live in thankfulness that he was."

~Hebrew proverb


"The journey is the reward"

~Tao saying


Celebration of Michael's Life

A Memorial-Celebration of Life will be held for Michael Lowrie in San Francisco on Saturday, September 19, 2009, from 2 to 4pm. Details regarding the location will be forthcoming.

An Angel earns his wings

Bring me back to life,
originally uploaded by Lacking Focus.
A Warrior becomes an Angel...earns his wings.

Michael left this world at 6:05 am.


Dan.

Sitting vigil with Michael

Candle
Originally uploaded by andrewlee1967

Sitting vigil with Michael.

He sleeps, quietly, trustingly.

Michael is no longer able to tell me what his needs are. He has put his trust in me, and I must trust my instincts when it comes to maintaining the optimal level of medication throughout the day.

This is actually my second attempt at a journal entry today. My first draft, I'll call it, was mistakenly deleted. Each time this happens I find myself about to react, and can feel my blood pressure rise. Then I reconsider the lack of magnitude that such an matter is, take a deep breath, and start over.

In writing these journal entries I am often questioning just how much to share. Then as a writer (I'm getting some lofty ideas) I remind myself that art, like love, should have no boundaries. With this in mind I'll share with you my finding that you can squeeze a lot of love into one small hospital bed. As of last night Michael still had strength in his right arm. I was able to lay beside him, held in his embrace. I share this as a testament of how this relationship continues to be one of mutual love and affection. Michael continues to give me so much. And though I know that this same arm has lost it's strength today, his occasional gaze can still cause me to bend at the knees.

Michael's breathing is getting heavier, and in the background is the lovely voice of Julia Fordham. Today we have been enjoying the purity of her voice with our CD collection. I have been playing all of our favorites throughout the week, knowing that he can hear them. I can feel that someone, or something, is communicating with Michael about his impending journey, but while we are sharing his attention, Michael will have music.

Throughout last night Michael was focused on one particular area toward the ceiling. He was clearly enthralled by something, as he was looking up with the curiosity of a child. His guide must have arrived.

Keep your love flowing, yet consider this. Michael has benefited so much by all of our love. In his honor, as he prepares for his departure, lets start sharing some of that love with others who might also be in need.

Love. Dan

Time to let go

• Tuesday, September 8, 2009 12:23 AM, PDT
I sit here after a long day of keeping close to Michael, and tending to his needs. Michael is no longer able to communicate, other than an occasional whispered word, or motion of his right hand. He sleeps for most of the day, yet will open his eyes to gaze upon us. At times he reaches out for an embrace, which fills my heart with the purist of love.

Yesterday the kids and I spent the afternoon and evening gathered around Michael. I taught the kids how to care for him, and each was able to contribute and show their love. We all had tears in our eyes whenever Michael would awaken, or when he was in distress. It is a day I will always remember, and I know the kids will cherish the memory of our shared caretaking of Michael during this special time.

Having Michael in our lives has truly been an honor. And we consider ourselves equally as honored to be by his side while he begins the process of moving on from this life. Our hearts are breaking, yet we know there is so much more ahead for Michael.

Yesterday I was able to let Michael know that I was ready to let him go. I told him that he was free to move on whenever he felt ready. I wanted him to know that I love him so much, and losing him this early in life is something I never imagined possible. Yet, I say again, I am blessed. What a joy to have Michael as such a significant part of my life. Never did I truly believe that someone would come along and love me the way he has. Saying goodbye to Michael is, and will be, the most painful experience thus far in my life. I have to believe that I will see him again, and I have to believe that part of him will always be with me.

Send him your good thoughts through prayer or meditation. The power of your love will reach him, and each of those beautiful thoughts will help carry him to his next destination.

Love. Dan

The painful finish line approaches

• Friday, September 4, 2009 11:17 PM, PDT
Tonight I sit and take a big deep breath. Life this week has been an endless sprint. I feel like a long distance runner who is trying to find an even pace so I can make it to the finish line. Unfortunately, the finish line will be very painful, as I know that in the end I will lose.

For Michael's sake, I need to focus on what sounds horribly wrong. I need to focus on the win. I need to remember that Michael has had a good run. He has had a life full of adventure. Throughout his adventurous life he has touched the heart of so many people, and I am blessed to be among them. It was almost two years ago that Michael was dealt this life altering blow. He was told that his time would be limited, and that his time would be riddled with many challenges. Michael chose to move forward, and to expect the best. For quite some time he was fortunate enough to do well, and to enjoy many new experiences, and these days were filled with joy.

As you know, his good fortune has taken a turn. It is now time for Michael to begin the process of leaving this us. I have to believe that there is another adventure awaiting him. I pray that Michael will be met by a loving guide, one who will make his departure from us easier.

The difficult realities of this stage in his process are that he is no longer able to walk on his own. His brain has pretty much stopped communicating with his body, and he has lost most of his muscle strength. While his brain tells him he still able-bodied, his efforts are not met with success. His brilliant mind, and longterm memory, are still present. His ability to communicate however is quickly fading. Throughout this challenging time his mother and I have been at his side, making sure all his needs are met. It is both exhausting and rewarding. It gives us some comfort knowing that we are being present to him, that we are giving him the love and attention so well deserves.

I should take this time to let all of you know how grateful I am for the ongoing pouring of love and support you continue to bless me with. Michael, myself, and all of our family, are so nourished each day by your collective love.

I don't know how much longer I have with Michael, so I am doing my best to find joy in each day. My hope is to slow down, to not keep running so fast that I miss out on what is before me.

Before me is a man that offered me his heart, a man I will always love.


Dan

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

Inter-Dependence Day

• Sunday, July 5, 2009 5:02 PM, PDT
Happy Independence Weekend! It's funny if you think about it. Our country, like many before it, fought for it's independence,yet we are so dependent on other nations for our survival. Maybe not a popular notion, but when we turn to other countries to manufacture our goods, to support our agenda, and to buy off some of our goods, we should be celebrating our inter-dependence as well.

As for myself, I have prided myself on my independence. I am a master of "I can do this on my own," for which I have often been rewarded with praise. Although I can be a team player, my team-mates always know that if you plant a question, or challenge, with Dan, he will not stop until the solution is found. Yet throughout my adult life the notion of independence continues to be challenged. I keep finding myself up against the alternative notion that asks me why the idea of inter-dependence is so threatening. Perhaps it's part of the behavioral traits that go along with being raised male in my generation, or maybe it's a character flaw that has me leaning toward a control freak arch type. Whatever got me here, I'm now in a place where I need to reach out, and I need to celebrate my inter-dependence.

For about the past 8 months I have been an active member in a Brain Tumor Caregivers online support group. I have found that many of us in the group are highly capable spouses and family members, yet we have recognized the need for mutual support. We recognize that we are not in this alone, and for mutual survival, we must be willing to ask for help and support. This group has been a blessing to me in where I currently find my life.

Today I also celebrate my inter-dependence with all of you. All of you have been very involved, and supportive, during Michael's battle with this brain tumor journey. I believe I can speak for both of us in saying a heartfelt "Thank You." We cannot do this alone, and fortunate for us, we have never had to. I hope all of you know that when you find yourself in need, I too will be there for you.

This past month seems to have passed quickly in some ways. Michael took his final dose of chemotherapy last night, and will have the next two weeks to recuperate from the various side effects. Right now the plan is that he will complete a second 21 day cycle of chemotherapy, then an updated MRI. During the past few weeks there were some scary times, where Michael was experiencing daily seizure activity along with problematic memory issues. When these symptoms were joined with the side effects of the chemo, our spirits were diminished. Once again I found myself pulled in too many directions between work and home life. After some careful thought, and direction from my peers at work, I have decided to take another leave from my job. I need to be at home with Michael and the kids. This is where my heart is, this is where my time is most needed.

This past week Michael's symptoms began to disappear. It has been somewhat remarkable, no seizures, no memory problems. I know enough about this disease to not read too much into this change. I think both Mike and I are trying to greet this change with open arms, yet experience it as a gift we have no ownership of. Each day that goes well is a blessing, and those that do not, they are a challenge that we will get through. We know this because of our inter-dependency with you.

All my love.

Dan

Quality of Life

• Wednesday, June 10, 2009 11:02 PM, PDT
I find that it is time to once again bring you all up to date with Mike. I have an awareness that from here on out my messages will likely be difficult for me to write, and for all you of, difficult to hear. We go into each MRI with very guarded expectations at this point. Starting last December each scan has shown increased growth. Michael has been on numerous forms of chemotherapy, and each has failed to give us the outcome desired. What we can say is that each form of chemotherapy, in conjunction with the Avastin, has probably given Mike slower progression than most people experience given this type of tumor. In some ways Michael continues to defy the odds by presenting very well in spite of this ongoing growth. I also know that know that the brain’s ability to compensate can sometimes give us a false sense of security.

I feel like a reporter writing an article for publication, and I know that this is my way of distancing me from my own emotional fall-out. For now this is how I need to handle this. In the past few weeks Michael has continued to experience focal seizures, and has been feeling intra-cranial pressure on his right temple. He says it is not painful, more bothersome. As we learned on Monday, this is being caused by the tumor in his temporal lobe. It appears to have grown since the last scan, and is likely causing some swelling. Michael’s doctor has increased his Lamictal to help address the seizures. What we don’t want is any break through seizures. This growth also corresponds with some recent short term memory issues that Michael is experiencing. Keep in mind that these are very mild symptoms.

Given the status of Michael’s condition, his doctor gave him a few options to consider. The first is a repeated analysis, that while the Avastin has not stopped the tumor from growing, it definitely has kept the growth at a slower than expected pace. Next, the doctor presented two alternative types of chemotherapy to consider. One is a chemotherapy known to benefit some brain tumor patients, but with a higher probability of side effects to endure. The other is a chemo known to penetrate the brain barrier, with little side effects, but with no proven effectiveness. We quickly dismissed the latter option, and took some time to consider the first. We definitely want Mike to remain on the Avastin, but he does have the option to discontinue treatment with chemotherapy at this point. It comes down to a quality of life issue.

It is easy for me to give my recommendation, as I want to think that each form of chemotherapy around the corner will be the one that stops the tumors in their tracks. Remember, what we can hope for is the progression to stop, not the tumors to go away.
I would like Mike to give it another try, and yet I don’t want to see him suffer needlessly. I want Michael to know that I support him in every decision he makes, and each of the choices are valid ones. Given this, Michael has decided to give this last chemotherapy a try. He will be taking Etoposide, also known at VP-16. It will be taken orally for 21 days, then off the medication for 14 days. If he is able to tolerate it well, he will then repeat this cycle a second time. After 10 weeks he would receive a new MRI. If the side effects become more than he chooses to endure, then the chemotherapy will be discontinued.

I am currently negotiating with my employer a reduction of my caseload, so that I may continue working, but on a part time basis. I encourage anyone who wants to visit with Mike to give him a call. Keep in mind that his energy level is compromised, so he requires a lot of rest. The late mornings or early afternoons tend to be the most optimal times for him.

My love to all.

Dan

Speaking of Time...

• Thursday, May 21, 2009 9:23 AM, PDT
Speaking of time, it has kind of slipped by me. I apologize for taking so long to write an update regarding Mike. Actually, I wrote what I thought was thorough, and witty, blog update last week. I was feeling very pleased with myself, then accidentally navigated away from the page, and lost the whole thing. Perhaps it was an exercise in humility.

As for Mike, this new chemotherapy has been a rough one for him. He has now received two rounds of the CPT-11, which has come with some of the typical unpleasant side effects. He seemed to have tolerated the other chemo’s better. Soon after the initial dose Michael was experiencing focal seizures once a day, for about four days. His medical team recommended an increase in his anti-seizure medication, which appeared to give him some reprieve. After his second dose this past Friday, Michael also experienced another focal seizure, then some very difficult side effects. Unfortunately today has not been a good one. He is very fatigued, and has had two more focal seizures. I sent off another message to the doc, and hope to get some advice on how to better manage these symptoms.

We are planning on driving up to Kelseyville to visit with Michael’s mother, Barbara, this weekend. It’s been a while since we have been able to get up to Clear Lake, so were hoping for lots of sun.

As I may have mentioned before, I have been back at work for the past few weeks. I consider it a wonderful gift that they allowed me to stay home with Michael for three months. I work with some of the best people I know. Although I return at a very stressful, and busy time, I am given a lot of flexibility to manage all of my family’s needs.

Keep Michael in your prayers. We accept traditional prayer, candle burning, incense and chanting, ommmmmm….

A Measure in Time

• Sunday, April 26, 2009 10:31 AM, PDT
Time can be measured in many ways. We learn quite early how to mark the time of day by minutes and hours. We also mark time by months and seasons. Some of us become so busy, or tell ourselves how busy we are, that we carry our Blackberries on our hip to make good use of our time. How many times have we said that we needed more time in our day to accomplish all that we want? How often have we told ourselves that we will have plenty of time “later” to do things that are important to us?

Some say that “time” is not always on our side. If our time becomes limited, then how should we spend it? How should we measure it? I’d like to think we can measure time in the relationships we create. We can mark time by how we nurture these relationships. Our relationships then become our legacies. They are proof of our existence, and the impact that we had during our lifetime.

This past month has provided Mike several opportunities to nurture, and be nurtured by, those who he has impacted throughout his life. He started out the month with a week planned for just him and his mother. Mike’s mother worked very hard to provide for he and his brother growing up, and she continues to do the same for her grandchildren. It pleases me to see both of them setting time aside to enjoy each others company. Next Mike and I were fortunate enough to spend a weekend reuniting with the friends he made while serving in the Peace Corps. These are all wonderful and loving people who have so much joy to share. It was such a fun time, with laughter, dance, remembrances and good food.

Last week I was on the receiving end of a surprise trip to Sedona, Arizona. It was the marking of my 50th birthday, and Mike planned out every detail. He brought together our friends and family to care for and supervise the kids at home. He arranged a week of relaxation and celebration for us the two of us within the majesty of this red-rocked canyon. Then to further mark this occasion, bestowed upon me an engraved pocket watch.

I can say that my life has been greatly impacted by the love of Mike. This week we celebrated the three year anniversary of our meeting. At times people will ask how long we have known each other, and we have felt the temptation to embellish our response. Why is this? I think perhaps it is because all of us can get caught up measuring time in quantity of years rather than the quality of our experiences. As a couple, as a family, we have certainly had our challenges. Yet these challenges have brought me to look at time very differently than in the past. I now try to focus on the now, making time now for each other, appreciating time now rather than later. In this way our time together can be as great as we make it. We can end each day being thankful for the time we had. We can start each day eager for that time to continue.

Yesterday Mike had a new MRI to evaluate how effective the most recent chemotherapy has been. To our dismay it was revealed that there is more growth. Mike’s doctor provided us with the information needed to make an informed decision about what to try next. I know it must seem that Mike has been on every imaginable chemotherapy available. Yet it the field of brain tumors, and perhaps cancer in general, there is always another form of chemo that might be the one that stops the tumor in its tracks. This time it will be CPT-11. This is a medication that is currently used in clinical trials at the major brain tumor centers such as UCSF and Duke. It has been found to be very effective in prolonging survival time for many people. Kaiser has CPT-11 available for treatment without the need to enroll in a new trial. I think this is a good direction for Mike’s treatment, as we will have the potential option to move his treatment to UCSF should we decide that is best for him. He will receive the CPT-11 intravenously along with his Avastin every two weeks. He will be scheduled for his next MRI after three cycles of the chemotherapy.

Keep Mike in your prayers, and keep him always present in your heart. Remember that his time is now. Our time with him is now. For this time I am grateful.

2009 Brain Tumor Walk

Please help us support the National Brain Tumor Society. Here is a link to our team page...A Hike with Mike. You may make a donation on either of our personal pages.

http://www.braintumorcommunity.org/goto/A_Hike_with_Mike

Lovely and Amazing

• Friday, April 10, 2009 1:38 AM, PDT
I realize that I am quite behind with many things these days, one of them being this journal. Mike received his new chemotherapy last Thursday. He was a bit anxious about the new chemo, as it was through the I.V., rather than a pill. It turns out his worries were unwarranted, as he sailed right through the treatment with no significant side effects. This was a great blessing, as Mike had several small trips planned around this time.

For the past 5 days he has been on a trip with his mother, Barbara. I anticipate that they are having some quality time together. Next we spend a couple of days at Mike's Peace Corp reunion up in Inverness, the Point Reyes area. After that is a short surprise trip to celebrate my turning 50. Each of these outings should be relaxing, as too much activity can be kind of taxing on Mike.

Mike continues to be somewhat of an anomaly, as while at each MRI there is evidence of tumor growth, you wouldn't know it looking at Mike. He continues to amaze me with his functioning level being stable. His tumor growth was last seen in the upper frontal lobe, where there could be changes in one's personality. Mike and I were trying to make light of his situation, and trying to anticipate what changes could be ahead of us. What if the changes were a good thing? What if they changed some of his character flaws? Just kidding, I love Michael just the way he is....

I wish all of you many blessings.

Love. Dan

P.S. Mike and I have made a late decision to participate in the Brain Tumor Walk again this year. Anyone interested in making a donation may do so on our team page. You can donate by way of either one of our names. The money all goes to the same place.
http://www.braintumorcommunity.org/site/TR/Events/BTW-SF?team_id=21260&pg=team&fr_id=1380

He is my Warrior, and I his Army

• Thursday, March 19, 2009 3:52 PM, CDT
I wish I had more positive news to report. Today was Michael's MRI update. The nurse practitioner, Mady, went over the new scans with us after she and Dr. Peak did their review of today's MRI. What they found was that there was new tumor growth higher up in the frontal lobe. She says the area around the initial tumor resection appears to be stable, yet it has clearly spread into the area behind Michael's right eye. What this means regarding his treatment is that he needs a new form of chemotherapy. After making several phone calls to UCSF, Stanford and UCLA, Mady found that there are currently no open trials that she would recommend for Mike. There are two at UCLA that may open in the next few weeks, both of which she highly recommends. As it is uncertain when they will open, she felt that we needed a plan of action as of today. The recommendation by her, and Dr. Peak, is an IV drug called Carboplatin. This form of chemotherapy would be repeated every 4 weeks. Michael is scheduled for this infusion on April 3rd. It is our hope that one of the trials open up in the next two weeks, and that Michael be found eligible. They would need to be able to begin his treatment very soon after.
As a reminder, how these treatments go, once the tumor recurs, you move on to the next available chemotherapy. By finding a promising trial medication, you are able to save the other chemotherapy drugs as a back up plan. It's always a matter of trying to combat the tumor once it becomes resistant to the current treatment. In order to be eligible for a trial you must have completed the most recent cycle of your current chemotherapy. So in this way, it is often a matter of timing.
We have a lot of faith in both Mady and Dr. Peak. Both of them previously worked at UCLA, and both have contacts at UCLA which can help streamline the process. Meantime, I will continue to make contact with the other teaching hospitals, such as UCSF, to make sure they are aware of Michael's treatment needs.
Again, I wish to be thankful for where we are today. Michael has remained seizure free since mid January. He has tolerated well the many medications he is on, and he has not suffered any significant neurological deficits. Michael has survived this horrible disease for 16 months. He is my warrior, and I his army. Actually, we are all in this together. Thank you for loving Michael, and please, remind him how many of you are there behind him!
With so much gratitude.
Dan

Chance Meetings

• Saturday, March 7, 2009 4:31 PM, CST
Another quiet weekend at home. Both Mike and Arianne have suffered most of the week from this terrible cold that keeps getting passed from person to person. Fortunately I have avoided getting trapped in it's lair. As the family's designated driver, I can't afford to get sick.
Yesterday was Mike's Avastin infusion at Kaiser. If you have never visited a chemotherapy infusion center, there are many reclining chairs, one after another, where patients are set up to receive their infusions. Sometimes patients are there on their own, but often next to them are their significant others. Funny how we often just smile at the person next to us, but rarely strike up a conversation. Yesterday was different. Across from us was another married couple around our age. All four of us were initially interacting with the friendly nurse, and eventually the wife ask me where we were from. As it turned out this couple use to live in our same neighborhood in San Francisco, and were also raising teenage children. They both had such a great sense of humor, which made our appointment very enjoyable. It's funny how these little chance interactions can be so nourishing to the psyche. While the husband didn't have the same type of cancer as Mike, as a couple they are still going through very similar circumstances.
Take care everyone, and be open to these chance meetings.
Love. Dan

Bliss

• Friday, February 27, 2009 8:51 AM, CST
Mike and I are having a very relaxed Friday morning. Actually, Mike is still in bed. I've been checking email and getting caught up the various blogs I enjoy reading. Mike has had a good week, appearing to have a bit more energy than the prior weeks. Yesterday we spent a wonderful morning at the Kabuki Springs and Spa in Japantown. Bliss!
As you might guess, Mike and I are still basking in the afterglow of our October wedding. It was such a beautiful day for us. Next week the Supreme Court will be hearing arguments from both sides of the issue regarding the passage of Prop 8. Here is a link to view a very touching video, and with it an opportunity to have your voice heard. http://www.couragecampaign.org/page/s/divorce
Peace & Love.
Dan

Bittersweet Valentine's Day

• Saturday, February 14, 2009 8:03 PM, CST
Today has been a very thought provoking day for me. I am so grateful for the love I have in my life. I feel honored to have Mike in my life, and enjoy the occasion to let him know that I love him with all my heart. I want everyone to know that Mike is doing well right now. He started a new round of chemotherapy on Monday, and though at times it is tough on his body and spirit, I am amazed by his resilience.
One of the ways that I have found my own strength to weather through this battle is through several online support networks. In reading, or corresponding, with other spouses/caregivers, I have had the privilege of being witness to the abounding love and care that is shared among them. It amazes me that even though these people are brought together by circumstances of great pain and sorrow, each one takes the time to lend a shoulder for others. I am finding that part of this shared journey is to be hopeful when others are losing hope. To help celebrate when they are given hopeful news, and to hold them up when this part of their loved one's journey ends.
Please take time to send loving energy to the many caregivers who have had the honor of caring for their loved ones. For some this is a bittersweet day. A day when they may strongly feel their loss, while also reflecting on the gift of love they shared.
Thank you for indulging me. At times this website is my opportunity to process thoughts and feelings. They may not always be informative, or intelligible, but by writing them I draw renewed spirit.
Thanks, and love. Dan

Cloudy Days

• Thursday, February 5, 2009 9:20 AM, CST
Hi everyone. It's a cloudy day outside, but I'm feeling the sun shining down on Mike today. Yesterday we spent the whole day at Kaiser with an early morning MRI, an update appointment with Mady, Mike's nurse practitioner, and a very extended appointment at the chemo infusion center. Anyway, the MRI gave us good news, there is no significant growth on his tumor. This is great! What it means is that the new chemo, CCNU, has been successful at preventing the tumor from spreading. Mady does caution us to report any changes that come up with Mike during the next 6 week cycle, as his Avastin can cloud MRI scans, and so they can't rely solely on the images. Yet with Mike exhibiting no significant neurological changes, we are optimistic. He has been free of any seizure activity for the past four weeks. His consistent challenge continues to be fatigue and nausea.
Last weekend Barbara and Tessa visited for a couple of days. Tessa baked a delicious cake which was devoured quickly. Dante BBQ'd us some chicken for Super Bowl Sunday. We enjoyed all the good food, and skipped out on the game.
The rest of us here at home are doing our best to keep our lives in order. I recently decided to take time off from work. In trying to keep everything afloat, I have been having increased concerns managing stress. In order to take care of Mike and the kids, I also need to take care of myself. What will help me most right now is to be home with Mike. I don't want to take advatage of this good periods.
This weekend my cousin Fred is coming up for a visit. He has offered to supervise the kids so Mike and I can get away. We will be enjoying an overnight trip to the Russian River. We will count this as our romantic Valentine's Day celebration.
Thanks for all your prayers.
Love. Dan

Updated MRI

• Tuesday, February 3, 2009 2:08 PM, CST
Tomorrow Mike will go in for an updated MRI. Please keep him in your thoughts and prayers.
Love.Dan

Message from Michael

• Tuesday, January 20, 2009 10:43 AM, PST
Hello! I want to thank everyone for the wonderful messages, cards, and Bday presents. This has been the best bday ever, which was simply spent with my family; including my brother whom I haven't spent much time with over the years. Its rather ironic since this time last year I didn't think I would celebrate another bday. As mentioned in previous updates, the news has not been good lately, with the additional spreading of the tumor. The news was equally bad this time last year, so I feel very lucky to have had the last, extra, year; I've learned and experienced much during this time. We all live with the perverbial clock ticking but its strange when you're told it will stop soon. With your continued love and support, I hope to ignore the doctor's prognoses for another year; not that I'm that eager to reach fifty, but it beats the alternative.
Love and hugs, hjertelig hilsen og stor klem, - Mike

Speaking from the Heart

• Thursday, January 15, 2009 9:02 AM, CST
This month has been a month of visitors, which we really enjoy. Know that while we love having visits, it's best to gage the length of a visit by how Mike is doing. His fatigue appears to increasing, so he may at times just say a quick good-night, and see himself off to bed. Don't take it personal, he's been given permission by the all and powerful, me, to do so without explanation. Mike's fatigue is not always from something strenuous, it can often just be from system overload.
This Sunday will be Mike's birthday. We will be celebrating it with Barbara, Bob, the girls, and our boys, up in Clearlake. I encourage all of you to send Michael a birthday greeting either here or through the mail. He loves to receive cards, and I have created a scrap book so that he can go through them when desired.
Mike and I are putting our energy into being full of love and appreciation each day. I want to encourage all of us to not take each day for granted. We never know what's around the bend, so lets take full advantage to tell each other how we feel. Speaking from the heart is not as easy as it should be, so start flexing that muscle now.
Love. Dan

New Year's Wishes

• Sunday, January 4, 2009 5:52 PM, CST
I want to thank everyone who have sent Mike their well wishes. Your words of support truly touch our hearts and remind us of the safety net that our loved one's provide. We welcomed the New Year quietly with a few friends, and enjoyed recent visits with Mike's mother and short trip to visit my parents.
Mike appears to have tolerated the new Chemo without any major side effects. We will now be patient, and let the medication do it's job.
Love. Dan