I am well and loving it

I am doing well. Labs are good. Mild anemia, mild macrocystosis, slightly high BP and uric acid, but great chemistries and platelets.

Nodes are staying small.

So I am not going to think about CLL or ITP or transplants or trials for a few weeks.

Won't be checking the blog or Facebook or even emails for a few weeks.

I will be silent, but not still.

Time to let my worries melt away.

Time to reassess and pause and refresh.

Sounds like a bubble bath, but it is immersion of a different kind.

Fund Raising Marathon: A tale of redemption

Hillary is a very special young woman who has fought off her own life snuffing demons. I am lucky to know her for so many years and to see her grow into a strong, funny, and wise adult. Family practice is such a great job. With her permission, please read what she has say. It is heart warming to think of all those runners with a picture of Yaakov, my donor, and me bouncing across the San Francisco Bay.

What a blessing. What an antidote to the last few weeks.

This week’s newsletter and coached run will be honoring Dr. Brian Koffman, the Personal Honoree of our team member, Hillary Bergmann.
Here is Hillary’s story:

My freshman year of high school I was diagnosed with severe anorexia, and sent to a hospital in Northern California to undergo treatment. The doctor's and therapists lost faith in me, and I left the program 10 pounds lighter, more frail and weak. Fortunately, upon my return to Southern California, my family found a well regarded family doctor, Dr. Brian Koffman, that they hoped would help me recover. Thankfully this man was able to get through to me in a way that very few could. With his kindness, wisdom and support he helped me battle my demons and, over time, slowly regain my health. He spent more time with me each week than any doctor I have ever experienced before or after; he made me feel important, good enough and worthy of taking up that space (a way I normally did not feel). In addition to our many doctor visits (him sporting a new set of fun suspenders that would make me laugh), he also came and visited me at the hospital after I broke my face in my trampoline accident. Sleeping in that hospital bed all night was one of the most uncomfortable experiences, being tangled in tubes, waking up every 15 minutes to beeps and nurse checks, it was just awful. I remember opening my eyes the next morning, relieved the night was finally over and saw not only my mom, but Dr. Koffman there as well. It touched my heart so deeply as he had no need to be there; It wasn't his hospital nor was it even near where he lived or had his practice. He came because he cared - yet another gesture of love, to show me that I was important, that I was good enough, and worthy of taking up space. I have tears in my eyes thinking of this memory and what a gift he has been in my life.

About two and a half years ago I received a shocking e-mail from my wonderful doctor (who had since become my friend that I now called Brian :) sharing that he had incurable leukemia, chronic lymphocytic leukemia (CLL). I was beside myself, how could this happen? Fortunately, his email went on to say that he would be having an experimental haemopoetic stem cell transplant that would offer a chance of 7 to 10 cancer-free years, and that it could be a cure! I was ready to hop on a plane to Southern California and give blood, platelets, or do anything that could help this man who so deserved to live a healthy and happy, long life. I wanted to do anything I could do to give back to the man who had given so much to me and to so many others. At the time, he did not need my blood or platelets and he did go forward with his transplant. He has a blog (http://bkoffman.blogspot.com/ ) where he keeps us all up to date about his progress, his blood cell count and all the "fun things" that are now his life. It’s struck me how positive he has been through this whole process and I love that he is always up for a good laugh!

For the last two years I struggled with what to do for my dear friend, how to help. Recently I watched a friend of mine train for a triathlon, which I later found out to be for TNT, and I donated to this important cause. It was then that a light bulb went off - it was time to take that donation to the next level ... and that is when Dustin and I decided to become TNT team members ourselves and to run the Kaiser Half Marathon in February in Brian’s honor.

Keep running, keep stretching, keep fundraising, keep enriching your heart and mind! YOU are helping to cure blood-related cancers!

Why I am vegan, revisited

Dr Hamblin recently posted on alternative therapies for CLL on his blog and discussed the lack of evidence that diets are any help. He is right of course.

Here is how I responded to his post:

I am vegan, mostly raw, mostly organic. I have no fantasy that this will cure me and even less impulse to convert anyone else to my diet. And I am not fanatical. I cheat when I travel and eat egg and dairy.

I do it because I believe a plant based diet is the healthiest diet for me (with a B12 supplement), and I already have CLL, so I don't need anymore problems.

I do it because I believe it is more sustainable for the planet and is clearly better for the animals. And it supports the local organic farmers' co-operative.

I do it because it makes my GI tract feel the best it has ever felt.

I do it because because I love the taste of fresh local organic fruits and vegetables. It helps to live in southern California

And I do it because it is a form of discipline that I enjoy in my otherwise mostly undisciplined life.

Bernie's Memorial

Bernie's memorial service was wonderful because he was a wonderful and very funny man with a fine family and friends. I wish I had known him longer, not just by having met him sooner on our separate life journeys, but more so by his living longer and beating his leukemia. Another sad day.

Bernie died of complications of his multiple courses of chemotherapy for his AML. The nasty chemo was necessary in the hopes of cleaning up his acute leukemia enough to allow a life saving transplant. I visited him at Hoag and at City of Hope where he remained positive and full of gentle humor and a contagous laugh.

In May 2010, he developed AML, acute myelogenous leukemia, possibly from his prior therapy for CLL or just from the CLL itself. That was diagnosed in 2004 when he presented with 4 grape size nodes in his neck and 95% bone marrow involvement Soon after, he had FR which is supposed to be safer than the riskier FCR combination. Dr. Hamblin has recently posted on this exact topic on his blog which I highly recommend it to anyone with CLL or not.

In his last few weeks Bernie was in hospice care for a difficult chest infection which he couldn't fight as his immune system had been bulldozed by chemo. Unlike Robert's situation, at least Bernie and his family had a chance to prepare for the end.

I now personally know five people who have had or tried to have transplants for CLL. I am the only one still alive and I rejected the graft.

None of them died of relapsing disease, though at least two of them had pretty aggressive disease at the time of their demise. They all died of complications of their treatment- mostly infections and of those mostly pneumonia, but also cardiac, pulmonary and renal problems factored in.

Besides learning again that cancer sucks, besides knowing that I been to too many "celebrations of a life", besides seeing just how important fathers are, what have I learned?

That transplant are very risky. People die or and may how don't are miserable.

What usually kills you is the induction therapy and its collateral damage, especially to the immune system. You can't fight off the pneumonia bugs if you have no soldiers. And it doesn't help if your kidneys or kidneys or heart are damaged. And it is a twisted irony if the treatment to control the disease causes an aggressive acute leukemia as it likely did for Bernie.

What to do, besides mourn?

Don't give up.

Don't write off transplants or chemo cocktails, but maybe try to put them off as long as possible.

Look for other options.

I am reassessing my plans. I must.

I am counting my blessing. I should.

They are new focused treatment on the horizon I will share soon.

I am sad and scared, but I am also optimistic.

LAST WEEK WAS TOUGH

LAST WEEK WAS TOUGH

Up to my haircut in grief.
Feels like I am juggling chainsaws
on an ice rink in a hurricane.
Another memorial service tomorrow.
I am okay, but last week was tough.

My thoughts edited with a little help from my friend Todd.

My Eulogy for Robert

Hardip asked me to say a few words about Robert at the memorial service today. Here are my notes.

It is my great honor to pay tribute and share what I learned about life from my friend Robert and specifically his heroic 5-year battle with Chronic Lymphocytic Leukemia or CLL.

And although I am addressing my words to all his family and friends today, I am speaking mostly to his beloved children in the future so through the magic of the video recording, when they are bit older they can understand a little more about their dad and see a side of him that I was lucky enough to get to know.

I met Robert when we were among the earliest members of an Orange County support group for CLL (chronic lymphocytic leukemia) in early 2007. It is a club that no one wants to join, and so we rallied around to help each other and Robert gave so much.

We are also close because we were both diagnosed within a few weeks of each other 5 years ago in 2005. For Robert he has hit with this supposedly old man’s disease in the prime of his life. What could be for some a slowly progressing blood cancer, in his case mutated into an aggressive stubborn disease that took whatever was thrown at it and just kept growing. He tried increasingly nasty chemotherapy combinations, with all their terrible toxicities but they only bought the briefest respite. He was the researchers’ willing guinea pig in the hope that the clinical trial treatments might benefit himself right away and others in the future, but the experimental drugs didn’t touch his disease. Finally he pushed for the most extreme of all cancer therapy, a dangerous bone marrow transplant done in June of 2010 that pretty much guaranteed a long hospital stay in strict isolation, multiple transfusions and infusions, constant 24 hour a day poking and prodding, miserable side effects, and even that didn’t stop Robert, but sadly it didn’t stop the cancer either. The CLL just kept coming back, meaner than ever, with more pain and swelling and fatigue and particularly difficult stomach issues.

This man so loved life and so loved his wife and children that he was willing to go through such misery for a chance, no matter how small to spend more years with his family. This is bravery. This is what a hero does.

But for Robert, this was just the beginning.

I never heard any self-pity or any angry questioning of the unfairness of it all. No: WHY ME? I just heard hope and determination.

He used his remarkable intelligence to search out the best doctors and best options for his cancer all over the cancer, bringing back answers for himself and others in our support group.

No matter how beat up he was, he was always there to help other group members with a kind word, a thoughtful gesture, a smile, a laugh, a humorous anecdote, and a helpful tip, be it on cancer or car repair. He personally helped me with buying tires on line, changing light bubs in a 2-story stairwell, and deciding on a hospital for my bone marrow transplant.

But if there was a school event or any activity, no matter how routine, with one of the children or Hardip, the leukemia treatments and support groups could wait. Family always came first. I remember being fully gowned and masked to visit him at City of Hope Hospital post transplant. He didn’t look or feel that great, but what did he complain about? Yes, the hospital food, but mostly about not being home with his family.

What was most amazing was his constantly upbeat attitude. I have the same cancer as Robert and when I get a bad lab or x-ray result it can be hard for me to lift my chin off the ground for weeks. Robert would get slammed with the cancer, then slammed with the chemo, then slammed with the cancer again over and over again, and he just keep going with the absolutely certainty that he would win this battle. He was not naive; he was just tough as a tank and as full of faith as the Vatican on Easter Sunday.

So convincing was his optimism, so unshakeable was his belief in his own ability to beat the long odds, we all, the family, the other CLL patients, the professionals caring for him, who all really knew what a vicious enemy he was fighting, each of us was in shock when he heard the news of his passing.

It speaks volumes about how infectious his positive attitude was that we all, even knowing that his situation was critical and that his odds were terrible, we all believed he would be the one to fashion the miracle and live.

We can’t change the cards we are dealt, only how we play them. Robert played his lousy hand with astonishing strength and love and courage.

So family, and here I am speaking mostly to you children whom he loved so much and around whom he planned all his treatment. Your dad was a brave man. Your dad had a big heart. Your dad taught his doctors and nurses, and me and others with cancer or any big scary challenge, that there is always hope and that every moment of life is precious. Your dad taught me it is how you live your life you have that matters. In that lovely video of Robert played today, I think I saw Amerdeep (his oldest child) wearing a T-shirt saying “My Dad is my hero”. Your dad is my hero too.