Wednesday, November 25, 2009

Catch-Up


It's been a long while since I posted here, and what seems like a lifetime in experiences.

In short, my dad - my most favorite, wonderful supporter and father - died relatively suddenly on October 19, 2009 after a short bout with pneumonia.

We posted his obituary in a few newspapers:

Daniel Stewart Berkey Daniel Stewart Berkey of Oakland, CA, died of leukemia on October 19, 2009 at UCSF Medical Center in San Francisco. Dan was born on June 25, 1941 in New Brunswick, NJ. He earned his Bachelor's degree from Lehigh University in 1963. From 1963 to 1968, he was a captain in the United States Army. Dan served as a company commander in Vietnam with the 25th Infantry Division and was awarded the Bronze Star and the Army Commendation Medal. He received an MBA from The Wharton School of the University of Pennsylvania in 1970. He and his wife moved to San Francisco in 1977, where he launched a financial services consulting company, Berkey Associates, Inc. An Eagle Scout, Dan was an active parent and Assistant Scoutmaster of Troop 6 in Berkeley; he also served on the vestry of St. John's Episcopal Church in Oakland. He shared his love of camping, hiking, skiing and the outdoors with his family. Dan is survived by his wife, Ann Richardson Berkey, his daughter, Elizabeth Wellington Berkey and his son, William Cabot Berkey. Other relatives include his brother, Richard Scott Berkey, Jr of Virginia and his brother-in-law, Thomas Latham Richardson of Florida. The funeral will be held October 24 at 2pm at St. John's Episcopal Church, 1707 Gouldin Road, Oakland. Memorial gifts may be designated in Dan's name to The Aloha Foundation, Fairlee, VT (www.alohafoundation.org) or to The Leukemia and Lymphoma Society (www.leukemia-lymphoma.org).
My family has posted often to a blog on a website called Caring Bridge that serves to connect a person or family to others while someone is sick. The best part is the ease with which people can post comments, best wishes or thoughts. The website is: https://www.caringbridge.org/visit/dsberkey.

I think that after his death - starting now, really - that we will start to post there less and less. I want to start to connect the two blogs for the future, as I'm not finished writing - about this or many things. I do not have much time at the moment to re-create things, so I'll copy and paste my latest entry in the Caring Bridge blog here:

As I sit in my parents’ house in the early morning of Veteran’s Day, I thought it was appropriate perhaps to finally write another update in this Caring Bridge journal. I know many of you have read this, shared it with those around you, or written in the guest book both during my father’s life and after his death. Please know that we too have looked at it from time to time since he died, and have gained tremendous comfort in the connections that we have felt with so many of you this way. Thank you all for your time and your comments, and thank you in advance for reading this one.

We have talked many times about doing an update since the funeral. In fact, I have started it twice now, and not been able to finish.

Why? It’s raw. It’s hard to write about. I’m not sure you all want to hear some of the things we have thought, talked about, cried about, or done in the past few weeks. Last night made it exactly three weeks since my dad died; in some ways it seems like yesterday and in others, like much longer ago. Speaking as one person, my dad’s death is causing me to question many of the fundamental structures that I have been surrounded by for my entire life. And it’s not just me, by any means; all three of us (let alone other close family and friends) are wondering how to go about life without my dad around. There is much that we would like to convey though: good news as well as challenging experiences.
And I will be the first one to admit that it’s cathartic to write about this situation, and has been all along. Taking the time to think through how to convey information – emotions, actions and situations – to others allows me to reflect on them and process them as I go.

As a general rule, the time throughout my dad’s death, the funeral planning, the visitation, the funeral, and even the following week was very sad and very difficult. It was new and so different from any other week in my life, partially because we were so focused, and so clear. Holding a tribute to Daniel Berkey that was worthy of him and his different life roles, that allowed us and others to say goodbye, that encouraged others to celebrate him and to support us, was extremely important. And it was incredible. Thank you to all of you who attended one or the entire set of events two weekends ago. From our perspective, it was a terrific way to say goodbye, surrounded by family and friends from all over the country. We were blown away by the support, the food, the love, the friends, the hugs, and no joke – the FLOWERS! – that we received both for and after the funeral. I think there were 56 different plants or flower arrangements in the house at one time. It smelled amazing, and still looks beautiful. Thank you!

We’ve spent the last few weeks executing a two-pronged strategy (yes, that just popped out, and is ridiculous business school speak…but is just too funny to erase…! :p). The first is to take time, purposefully, to process things. To spend time together as a family and talk about my dad, think about him, cheer each other up, talk about us, jobs, and next steps. We’ve been to the beach in Point Reyes. We were up in Tahoe last weekend and took time to watch sunsets, walk on the beach, cook dinner, and go for hikes. Some of those moments have been amazing; one of them occurred just the other day, when I gave my brother a small squeeze and it quickly turned into a laughing, silly, strong three-person group hug. Others have been very difficult, as we try to evolve from a four-person family unit into a smaller, different dynamic while all of us process grief differently. We try to take the pressure to cope off of each other by taking turns; when one of us is sad, the others try to cheer that person up by telling jokes, or just by reminding us of what my dad would have done or said in that same situation. Most of the time, it works, and we smile as a result.

The second strategy is to dive back into ‘life’ as we know it. I for one missed about two solid weeks of classes and have been doing my best since then to catch up. I only have a bit more than a month left of classes in graduate school at all, and my dad the MBA would be the first one to raise his eyebrows and strongly encourage me to ‘make sure you finish this semester!’ It requires sitting through class, talking to people, writing papers and learning – all of which are challenging at the moment, but many people have been very understanding. My mom has been back to work a bit and is traveling this week, both pulled and pushed back to a position that often fluctuates with Washington’s healthcare news – which I’m sure we all realize was extremely notable this week! William also has big news; he actually starts a brand-new job this morning, as a supervisor at McKesson’s H1N1 vaccine distribution center in Sacramento. He’s continuing to test for different firefighting jobs but this opportunity came up and we all, including my dad, think it’s a great one. Wish him luck!!!

As for thoughts on the transition back to ‘normal life,’ there are a few significant areas. The first is that it’s not normal anymore. Not at all. Things look different. I don’t forget that my dad was sick, and has now died – not when I’m in class, when I’m talking with friends, while walking the dog, when I’m eating dinner, lunch, breakfast – not ever. Some people have mentioned waking up in the morning and feeling ok for the first moment until it hits them and they remember. For me, it’s my first thought in the morning, and last thought at night. I don’t forget. And it comes and goes; I saw Obama’s eulogy tonight to the men and women killed at Fort Hood and it reminded me immediately of my dad's funeral; tears started running down my face.

Another area is the life structures that change. I catch myself saying ‘my parents’ and I wonder if I can still say that. “My parents’ house.” “I have to call my parents before going to dinner.” I guess not. Maybe for the house, it’s ok, as it’s still true, but perhaps not for the more active sentences. I guess it should just be, “My mom.” Or “my mom and brother.” Or perhaps simply, “my family.” That works. And it’s odd when other people say it too: “Are you going to ride with your parents to the beach?” No, I feel like saying, one of my parents is missing.

In addition, personal routines change. All that time that we had set aside to take my dad to the clinic and/or hospital at UCSF daily is now 'free time.' I miss it: both the opportunity to connect and spend time with my dad and the people and friends we made at UCSF. The people there are terrific and wonderful people and it was also a routine that gave all of us purpose. William, my mom and I went back and visited UCSF last week; we brought heartfelt thank-you cards and my dad's favorite Ghirardelli chocolates to the nurses and staff and went to both the clinic and the hospital floor, where he spent so much time and also died. They were all shocked to see us back so soon, but it was important to all of us to be able to say thank you and see it all one last time. I cannot imagine how hard their jobs must be, and also am not sure I can fully do justice to their amazing spirits and tireless attitudes. The staff in both the clinic and hospital are truly exceptional, and it was good to see them again.

Thank you as well to those of you who have already contributed to one of the two memorial gift funds! Both organizations have been absolutely terrific in working with us to earmark the gifts for something memorable for my dad, and it’s one of the reasons we wanted to update this blog - with more information about both organizations.

The Aloha Foundation is an organization that runs a wonderful set of summer camps and an outdoor center in eastern Vermont. All of my family has a significant tie to this organization; my mom, brother, and I spent I think 19 summers collectively either as a camper or counselor at the camps, and both William and I worked for the Hulbert Outdoor Center right out of college for a short time. My parents took dozens of trips back there to visit us, and created a strong bond with the organization; they later spent several summers at the one-week Family Camp in August and had a fabulous time. It provided the perfect venue for both my parents to enjoy the outdoors (and sharpen my dad’s Eagle Scout skills!) while at the same time being able to relax for a week among great friends. We have spoken at length with the Aloha Foundation and they have been wonderful in working with us; in fact, a link to the announcement is on their front page: http://www.alohafoundation.org/. Depending on amount, we are looking to use the fund to buy and set aside a tract of land in the White Mountains of New Hampshire, to be used as a camping and wilderness spot for the organization.

Similarly, the Leukemia and Lymphoma Society has been terrific to work with, and flexible to ensure that any money donated in my dad’s name goes to areas that are critical and would have meant a lot to him. We are planning to earmark any gifts to one of two of their programs in particular: (1) one that focuses on making curative chemotherapies safer, so that they do not induce neurotoxicity to the same degree as they do now. As some of you know, my dad suffered an extremely neurotoxic reaction to one chemo drug in particular this summer, and really did not ever fully recover from it. It was damaging to his quality of life as a whole; for example, it significantly affected his ability to recall words. (2) The second one would specifically support research on MDS (myelodysplastic syndrome) and AML (acute myelogenous leukemia), BOTH of which he had. In addition, it is certainly worth noting that the McKesson Foundation has also generously given $10,000 to the fund in memory of my dad, which both we as a family and the L&L Society are very excited about.

I think about my dad all the time. When I’m sitting in class, when I walk around, when I talk to people, when I’m quiet – I often ponder how to get through the rest of my life without one of my biggest supporters. I owe a significant part of who I am to him, and he lives on in that regard, as it is for many others I am sure.

Happy Veteran’s Day, Daddy. We miss you terribly, but are so proud of you – not only for your fight while in uniform, but for your life, and for your fight that ended sadly and taught all of us so much. You are a quietly determined hero.

All the best,
Elizabeth

Thursday, September 10, 2009

Help...and some details

As most people who know me know well, my dad has leukemia. That's Acute Myelogenous Leukemia, AML for short, code number 205 (ICD-9 code, for you docs). It's super. Pick up the sarcasm quickly. There are three critical pieces to blood and leukemia depletes ALL of them; here's what they do:

1 - Red blood cells: These store and carry oxygen around the body (along with other things). When you don't have them, you don't have enough oxygen and nutrients in your system. You get tired, short of breath, you can't walk up stairs, talk, function well, etc.

2 - White blood cells: These fight off infection. Period. If you don't have them, your body can't fight off anything, even the smallest little cold or sneeze. A normal person has a range between 4,300 and 10,800 cells per cubic millimeter (cmm). This morning, my dad's WBC count was 0.3. That's 300 cells per cmm. Not that many little cells with boxing gloves, ready to take on the latest fight.

3 - Platelets: These allow your blood to clot. If you are missing these, the slightest thing leads to bleeding - either externally or internally (= a 'hematoma,' or a bruise of varying seriousness). Normal platelet counts are in the range of 150,000 to 400,000 per microliter. My dad's today were 6. That's 6,000 platelets per microliter. If he falls walking up or down the stairs...well, I'll leave it at that.

Leukemia kills off all of these. There are ways to cure it. Mostly through a Bone Marrow Transplant (from yourself or from a donor). There are also ways to fight it off. Chemo. Blood transfusions. More chemo. Expensive drugs that cause white counts to rise. Other types of chemo. Everyone responds differently. Everyone. Unfortunately, we're approaching the end of the road. All those options are only options so long as the risks and benefits outweigh the costs. And if they are not effective in fighting the leukemia, or put the heart excessively at risk, or kill all of the working grey matter in a person's brain -- well, they somehow lose their rosy potential.

My dad is an excellent patient. He's cheerful (less so lately, but give him a break, he's exhausted), interesting, jokes with the doctors, remembers the names of the nurses, doesn't complain of pain (even the numerous needle sticks), analyzes all situations and most of all does not give up. The latest prognosis -- of 3-6 months, the first time anyone's mentioned time or the lack thereof -- he met with the following comment and a shaky smile: "Damn the torpedoes, full speed ahead." It's amazing to be around him. He's an inspiration to me and to others, especially those in my family who get to see him and hang out with him lots. Many nurses and doctors have warmed up to him, even the tough ones. I can imagine how difficult it is for them. Especially working in Hem/Onc ("Heem-Onck" = Hematology and/or Oncology) they have to steel themselves against losing their hearts to their patients. Because the odds are not with everyone, especially not among these chosen few, and people don't last forever. They shouldn't. It doesn't make it any easier, but it's true.

Many people, upon discovering or learning more about the situation, tell me (or others in my family), "I'm so sorry; let me know if there's anything I can do to help." Help. It's a difficult term, and one that I aimed to dedicate this entire post to. It's critical for people who are existing together and caring about each other to help one another. It's what builds friendships and communities, and reminds me of the ancient parable:

“A Chinese parable describes the settings of Heaven and Hell exactly alike: Each is an enormous banquet with delectable dishes on huge round tables. All are given chopsticks five feet long. In the banquet in Hell, people struggle to manipulate these awkward utensils, give up out of frustration, and starve. In Heaven, everyone serves the person across the table and each becomes abundantly full.” -- Chungliang Al Huang & Jerry Lynch, Mentoring: The Tao of Giving and Receiving Wisdom, 1995

But while help in the broad sense is easy to offer, and so, so much appreciated, it's tougher to do at the 10 and even 1-foot level. And it's very difficult to plan for and plan around. Before I get started, they are ALL appreciated. It's just that some make a real, true difference. There are different levels of help. Write an email? Causes warm fuzzies. Send a card? Write a note? It brings a smile, and is kept. Call and talk to me? Wonderful. Call my mom? Even better. Send food? Can be extremely helpful, especially if it coincides with a really needy time. Feed the dog? Walk her too? What about two times in one day? And if Molly makes a mess because she's old, are you willing to clean that up? All helpful, but I certainly temper what we ask for and from whom. I'm not willing to put someone in a difficult position, but it sometimes is that. What about being a driver? My dad goes into San Francisco almost every day for a treatment, an infusion, an appointment, or to the hospital for an overnight+ stay. It's a 45 minute drive each way. Plus parking. Plus walking with him. Taking notes on everything. Making sure he has what he needs at all times. It takes a tremendous amount of faith to entrust someone whom I/we love, who cannot fall, ever, to a friend.

There's the help that can be planned for, and there's the help that cannot be. Today my mom and dad checked out of the UCSF hospital after a week-long stay and were in the car ready to go when my mom's car died. Done. Kaput. Recall my dad's current blood counts. He can't be outside for long, he can't ride in a dirty tow truck, he can't sit in a hospital waiting room where sick people sleep all night long, and he's tired. Can't stand up for long, and can't walk very far. Today worked out fine; I was available so I jumped in the car, drove to SF and picked him up. I called a few people to see if someone could pick up my mom at the car place (I could not now leave my dad alone...), but the friendly helpful tow truck driver offered to take her. Phew. We all arrived home around the same time, and shortly after that, pizza showed up. One of mom's staff members and a 'savior' per my dad had realized the stress that the car caused and sent over some dinner. YAY. :)

The trouble with help is that it's inconvenient. The most helpful things require someone to go very much out of their way to do something for me or my family. And those people I will never, ever forget. That kind of help stands out in a way that few people do, ever. There are only a few people in my life who will voluntarily sleep at my parents' house and wake up at 5am to calm me down and help get my dad to the emergency room because of a fever. Few people who will come over three times in a day to make sure Molly is ok. And this is the tough part. You never know until you need it and you ask that you can really count on someone. Or not.

Help. Yes, I need it. We all do to varying degrees, depending on our current and future states. To those who have offered, thank you. To those who have not only offered but have helped, you are wonderful. And to the special people in my/our life who are willing to put themselves last to alleviate stress, pain and difficulties, you are a guardian angel. We all need more of them. I feel grateful that I am able to fully appreciate the extent to which help helps. And I hope that I am in a position someday to be able to pay it back or pay it forward - whichever you like.

So the next time you offer to help, just make absolutely sure you ponder it a bit harder before you say it. Do you mean it? Really? Let me know which level of help you can do. Because I might have to count on you. It might be the middle of the night. And you, even with something small, even by missing an event to stay with Molly or visiting in the hospital, can make all the difference. I mean that.

Thank you. Profoundly.

A fresh start?

Is it possible to have a fresh start? What does that mean? Do I really want it? Yes and no. A new semester, a fifth one at that, when most of my friends are out and about, if you will. Different places in the world, different ways of thinking through their daily lives. Up at 7, dressed for work, in meetings, go to yoga, home again for dinner. Repeat. All the while attempting to (a) use the brain, (b) apply gained knowledge and (c) make a difference. In the way a cube-mate or manager perceives you, in the way your work is considered, in the success of yourself and a company, and a difference in the world.

A fresh start. Fresh starts are good. Needed. They keep people sharp. Interested in learning. No new starts = stagnation in my opinion, although how does one define a fresh start? Barcelona would have been that, perhaps too much so. That was more 'goodbye' than 'hello,' more far away and maybe running away than new and fun. Back to the fresh start. A new way of thinking through things I always welcome. New friends are always welcome. Interesting conversations that lead to new friends or new places with old friends I also welcome. New experiences typically walk hand in hand with excitement, fear, fun, and a widening perspective. These I love. I hope to live my entire life without ever feeling bored or stagnating. By always opening the door on new experiences, be they difficult or just fun. Shutting the door on the past? No. Never. I cherish most if not all experiences I have had. Even the difficult ones. I'm learning more and more that it's the difficult ones that really make me feel alive. That it's the arguments that matter that truly lead to an understanding that is lasting. That the losses tend to redefine the present, and redefine perspectives. Redefine understanding. Bring you closer to others and farther from some.

I'm 29 and still young - still carded often - still uncertain where I will end up and what I'll do. But I'm inspired by my surroundings. By difficulties and by uncertainties. By visionaries, attempting to spur action from others. By people aspiring to be better and different. What makes me frustrated? Assumptions. Wrong ones, typically. Closed minds and the inability to think through 'different.' The inability to put others first and yourself last. The inability to understand and to operate from that understanding rather than from insecurity.

Smiley. That's the impression that many people have of me. I like that. I love to smile, to laugh, to connect with people through good times. It's a surface impression, sure, one that only represents the me that people know in short spurts. I'm not concerned, just thoughtful.

I'm interested in knowing what I will say if I have a blog. Some people start them when traveling. I'm having many adventures while sitting still. Well, "still" is relative. Staying in one geographic area but always moving probably defines it more accurately. I wonder and I challenge myself to see things as a traveler. What does that mean? To find the fresh start even while waking up in the same bed. To find true interest where there was less previously. To find the best parts about being a tourist -- the excitement, the photos, the awe. A good mission to have, and one that assumes optimism in people and optimism in myself. I haven't written in a journal since...well, since last Spring. Historically I write about big things in my life. Try to capture a bit of what I'm thinking. Relationships, experiences, endings. So I have it for perpetuity. Blogs seem like an excellent way to capture thoughts in the moment, to create a work of art that is thoughts on paper. I don't like the fact that if I write for others, I'm not writing for myself. So I'll avoid it. Write for myself as much as I possibly can. Cheers to that. Cheers to creating homage to thoughts that have not yet hit the page. Thoughts that are unformed. A design approach? I'll try. I find that type of 'out of the box' thinking profoundly interesting.

So -- here goes.