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