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