Wednesday, December 31, 2008

Out with the old - In with the new

The New Year is upon us and what a year it has been. I guess you could say, I am more reflective than usual. It has been a great year. It feels wonderful to see my children moving on in their lives with wonderful people. It is great to know that I have been able to come so far in the effort to make me whole again. The new heart is working well and I just finished my first course of chemotherapy to treat the amyloidosis. The hard part is finding new balance. With so many permanent changes in our family, we realize that certain things will never go back to the way that they were. We have learned so much in the process; but it is still hard. We are still not in complete control of our lives.

The Velcade and Dexamethasone have side-effects. Mostly causing fatigue and bloating on day 2 and 3 after the dose. Those days I am functional, but not fun to be around. I have not had significant neuropathy from the drugs, just the usual numbness and tingling in my hands, feet and lips. What annoys me most is that my teeth are super-sensitive to cold, but at least food tastes good, too good, I have gained 15 lbs. in 4 weeks. I wish that I could say it is all muscle, but, alas, dexamethasone, besides causing a 'moon' face, also causes truncal obesity. So if I appear fat and in a bad mood, you can blame the steroids.

Today, however, I feel great. I am off the chemo for two weeks and hope to enjoy every day of my break. Tomorrow we go to Tahoe to go snowmobiling.

My hopes for 2009 are:
1. See my amyloidosis go into remission
2. Get a Stem Cell Transplant
3. Return to work in February
4. Help Barbie achieve her goals
5. See my children progress on their own paths.
6. Ride the Foxy's Fall Metric Century (100 Km bike ride out of Davis, CA)
7. Get to the point where my health is not the major part of the conversation.
8. Start giving back again.

2009 is going to be a great year.


Monday, December 22, 2008

Merry Christmas

Yesterday, I was thinking about what this Christmas means for me. I realized that there is no gift that I could receive greater than what has already come to me. Prior to July, I had suffered silently for two years without a diagnosis. Once we found out that I had a serious condition, we shared that information with others. The response, to me, is still overwhelming. I know that thousands of prayers were offered on our behalf. A friend at work made me a rosary, another lit candles in the Catholic Church. Our names have been in prayer circles in Evangelical Christian churches. In my own church, The Church of Jesus Christ of Latter Day Saints, we have been remembered in temples and chapels across this country. Friends have fasted for us. Many have expressed love and support in so many ways in the last six months.
It is impossible to describe the cumulative effect on our lives of the combined faith of so many wonderful people. We have been so very blessed. I can witness that in every step we have taken, miracles have occurred. But the greatest miracle to me is to realize the magnitude of the love that I have felt from so many. We go through our lives and don't always realize how many people we have touched, how many remember and care about us. I am just one person, and yet, my life has been enriched in having known or met thousands of other individuals over my 49 years. Each person I have known is unique and has added to the person that I have become. I will never feel alone.
Barbie and I also recognize the impact of faith and prayer as it as blessed our family. Our children our at peace as they know that we will continue to do well and remain together as a family. We have felt this power carry us through each step in our journey.
People often ask how I am doing. Barbie will attest that I do have some difficult days, often related to side effects from the medications, but, overall, I am doing great. I feel no pain. Blood tests, procedures and even surgery have not really hurt, because each one has either increased our understanding of my diagnosis, or served to reverse its effects on my health. I feel I can handle anything if it helps to improve my condition. Also, I would rather have a diagnosis of a potentially fatal disease than to remain in darkness as to my perpetual failing health. This light of discovery has additionally lit the path that confirms I am in God's care.
I have learned much from this experience. I have completely put my trust in God. I may not live as long as I expected to, but I will live as long as I need to. Also, given the faith of so many on our behalf, I expect to live longer than my diagnosis normally allows. But, what I have really learned is that I would rather live just one day feeling loved than 1000 days feeling alone.
This is the greatest gift I could have ever received which makes this the most wonderful Christmas ever.

To all who have shared their thoughts and prayers on our behalf, I thank you from the depths of my heart and wish you a very joyous Christmas.


Wednesday, December 17, 2008

Be a Donor

Since my transplant many people have commented to me that they now might consider becoming an organ donor. When I ask why they have not so designated themselves in the past, the reasons vary widely. Clearly, there are some common misconceptions about organ donation, a few of which I will address here.

1: "I don't want my body mutilated." I find this very interesting given the fact that, in California, if you suddenly die, not under the care of a physician (i.e. any accident), you are required to have an autopsy. Only the coroner can waive that. Prior to medical school, I was a Denier. In French that translates to 'keeper of the morgue'. It was after participating in my first autopsy that I determined I would forever be an organ donor. Transplant surgeons would be somewhat more delicate in harvesting my organs than would the coroner. When the autopsy was over, I put everything in a bag and put it back in the cavity and sewed up the body. I figured that organ donation would be less disruptive.

2: "For religious reasons, everything has to stay together for the resurrection." To that I always ask, "Which matter will be used in your resurrection, your 35 year old matter or your 73 year old matter?" Everything we eat, the air we breath changes the composition of our body every day. Physically, a large portion of the molecules in me today weren't there 20 years ago. They were earth, oceans, clouds and other stuff. The matter doesn't matter. My guess is that God uses the 'blueprint' and rebuilds us with perfect materials. When we die, we decompose back to the earth from which we were created. There is nothing particularly sacred about those elements other than the memory of what they represented. All major religions both support and encourage organ donation.

3. "I don't want the doctor to let me die too soon, just to get my organs." This will never happen. As physicians, are primary responsibility is to save our patients. There is zero incentive for us to have transplant harvesting as any motivation to alter our care for any patient. This misconception can arise from a misunderstanding of 'when we die' and is often exacerbated by how this process is depicted on TV medical dramas. We die when our brain dies, not when our heart stops. The heart does not need the brain to beat. Case in point, there are no nerves connecting my heart to my brain. It began beating spontaneously when my surgeon placed it in my chest and supplied it with oxygenated blood.
When the brain is damaged so severely that is is no longer viable, we die. However, if there is still a blood pressure and oxygen getting to the heart, it will continue beating, for a time.
Of course, this is an extremely emotional time for the family; underlying the importance of having made the choice to be a donor prior to the moment of loss. I have 100% confidence in this process.

The true reason that we should be donors is because of how much good is generated by such an action. It not only saves the individual receiving the organ, but also affects thousands of lives of those who will helped by their continued existence. Like a ripple in a pond, the gift continues to expand. Heart disease, kidney failure, diabetes, liver failure, lung disease and blindness can all be corrected. A friend of mine, a urologist from Connecticut, told me that both his kidneys were healthy and had served him well for 70 years. He felt he could live just fine on just one kidney. He became an anonymous live kidney donor. What fulfillment he must have felt. Being a designated organ donor can provide the same satisfaction, but without the pain.

It is simple to become a donor. Most DMV's allow you to designate your decision on your license. In California you can also sign-up online at the California Transplant Donor Network (CTDN). Once you have made this choice, you should let your family know your wishes to avoid later confusion.

Give Life, Be a Donor.


Saturday, December 6, 2008

When is cancer funny?

I remember a Seinfeld episode where his comedy act bombs because he tried to make a joke about cancer and someone in the audience yells out, "I have cancer". Certain types of humor remain off limits, but only to certain groups. Blacks can make fun of blacks and whites, but whites cannot make fun of blacks. You can make jokes about dumb people, but not on intelligence, well you can if you are sarcastic enough. Like when Bill Murray in "What about Bob? referring to Richard Dreyfus, his psychiatrist, remarks, "We cannot comprehend him, he is so far above us we are like ropes on the Goodyear blimp."
It seems that you can use humor to apply to the group to which you belong. Hence, cancer patients often will use humor to lighten the gravity of their condition.

Yesterday, I was sitting in the Roseville Oncology infusion center. My magnesium was being replaced as my Prograf strips me of my magnesium and I can't keep up with pills alone. I was also getting my 1st dose of Velcade to treat the Amyloidosis, since I can no longer take Revlimid. The woman sitting to my left looked like she had cancer, which is a fair assumption in the cancer center. She was bald and her head was covered with the scarf often used by women in this condition. She was talking with her friend (the chairs are very close together) and she mentioned that she would be attending a new ward. I got this big grin. Members of the Church of Jesus Christ (LDS) refer to congregations as wards. She saw my smile and said. Are you LDS? The conversation ensued, which it always does, to search for common acquaintances. In our church we are connected not my 6 degrees of separation, but rather, more like 3 degrees of separation.
She told me that she had metastatic ovarian cancer that had metastasized to he peritoneal cavity and had caused bowel obstruction. She was supposed to die already, but the GynOncology surgeons removed the obstructing tumors and the chemotherapy shrunk the rest. She feels very blest.

I made the comment that Kaiser is the best place in the country to get medical care; (yes I am biased, but it is why I work here.) Now it was the turn for the woman on my right to interject. Her husband was in the chair next to me receiving therapy and she recounted his story and how she felt my statement wasn't just hyperbole. However, once she found out I was a Urologist, the consult began. The man was paralyzed from an infection of the spine and his bladder didn't work, so he was taught to catheterize himself 3 times a day. She asked if he should be seen by a Urologist. To which I responded, "You're seeing one now." I asked the usual questions, got his medical record number and told her that I would arrange follow up for him to have bladder pressure studies in our clinic and to see me in February.
It amazing what you can experience when you are a captive audience in a transfusion clinic.
So why is this funny? The woman to my left with cancer put a video on YouTube of her dancing in her glorious baldness, like the guy from the Six-Flags commercial entitled "Fun with Chemo"
Check it out. I find that humor is essential to coping with these types of situations, although timing and appropriateness are key. Being able to laugh at ourselves is a better pain reliever than any pill and with fewer side effects. Just don't make it too funny, or you'll get the response, "You're killing me" or "I just bust a gut" or "That was dead on" or "I just died laughing" or, you get the point.


Thursday, December 4, 2008


A letter arrived the other day

From the parents of my donor

The pain in its penning twice mentioned.

Their mourning continues

At the loss of their son

So also their love remains strong.

With mortal existence cut short

A vital part of him lives on

In me

His name was Shane.

Even in their pain his parents wish my happiness

A gift doubled in their charity

Such sacrifice inexpressible

My duty to them, to him

In each act of kindness I commit

May I shorten their mourning

Pain replaced by comfort

In time that they will again see

The beauty of the trees

The majesty of the clouds

And feel joy in the light of a new day.