Friday, October 29, 2010


My sister-in-law Alexandra sent this to me and I couldn't agree more so I thought I'd share.

Subject: A thought to share

a thought to share... I like this...

Someone had just finished taking an evening class at Stanford. The
last lecture was on the mind-body connection--the relationship between
stress and disease. The speaker (head of psychiatry at Stanford)
said, among other things, that one of the best things that a man could
do for his health is to be married to a woman whereas for a woman, one
of the best things she could do for her health was to nurture her
relationships with her girlfriends. At first everyone laughed, but he
was serious.

Women connect with each other differently and provide support systems
that help each other to deal with stress and difficult life
experiences. Physically this quality "girlfriend time" helps us to
create more serotonin--a neurotransmitter that helps combat depression
and can create a general feeling of well being. Women share feelings
whereas men often form relationships around activities. They rarely
sit down with a buddy and talk about how they feel about certain
things or how their personal lives are going. Jobs? Yes. Sports?
Yes. Cars? Yes. Fishing, hunting, golf? Yes. But their
feelings?--rarely. Women do it all of the time. We share from our
souls with our sisters, and evidently that is very good for our
health. He said that spending time with a friend is just as important
to our general health as jogging or working out at a gym.

There's a tendency to think that when we are "exercising" we are doing
something good for our bodies, but when we are hanging out with
friends, we are wasting our time and should be more productively
engaged--not true. In fact, he said that failure to create and
maintain quality personal relationships with other humans is as
dangerous to our physical health as smoking! So every time you hang
out to schmooze with a gal pal or sister, just pat yourself on the back
and congratulate yourself for doing something good for your health!
We are indeed very very lucky.

Sooooo let's toast to our friendship with our girlfriends/sisters.
Evidently it's very good for our health.

Wednesday, October 27, 2010


Sometimes I feel a little bipolar. Recently I feel like I have been going through a low period but now as I continue to adjust to less steroids I am on the upswing. I have taken control of the things that I can and that has been a huge weight off my shoulders. My office which is much more than that had gotten completely out of control to the point where I was so overwhelmed by the chaos I literally couldn't go into it. It was such a mess I didn't know where to start. At the suggestion of my dear friend DTS I hired this fabulous woman to come in and help me organize. Four exhausting days later you wouldn't recognize the place. This has totally translated into my brain feeling more organized and less chaotic. Controlling the things I can is empowering and calming.

Yesterday I started session 7 of 8 on chemo. My creatine is at 2.96. This is the first time it has been below 3 since the BMT. Maybe Amy has decided to take a vacation after all. I am thrilled and hopeful. Before we backed off the steroids I was not in a good place. I not only didn't look good but I felt awful. I was pretty convinced I was sacrificing my kidneys to some extent by cutting back on the steroids but I was willing to take the risk to feel better. Thankfully that has not been the case.

I tend to temper my optimism so if or when things don't go as expected I am not devastated but it's a little harder this time to not get excited.

Wednesday, October 20, 2010


No chemo this week so no numbers but feeling well.

Tuesday, October 12, 2010


Just a quick update from chemo today. Creatinine 3.1. Yipee! Dare I hope that all those nasty steroids gave my kidneys a chance to stabilize? It's hard not to get kind of excited.

Wednesday, October 6, 2010


So I had some surprising news at Chemo yesterday. I have been cutting back on the steroids to combat the side effects of the Cushings Syndrome. Last week my creatinine was up to 3.3 from 3.1. It's a fairly negligible jump and not unexpected but yesterday the creatinine was back at 3.1. Go Figure. Dare I hope that the time I was on the extra steroids was enough time to give my kidneys a chance to stabilize? I haven't really noticed any physical results from backing off the chemo yet and I know that takes time so it could be that as time goes on and the extra steroids leave my system the creatinine could creep back up but for now I'm going to take the gift and enjoy it.

So I have been asking myself lately where does God fit into all this? It seems that recently this topic has come up quite often. I am not an overtly religious person. I consider myself an agnostic. I believe in the possibility. Having been raised Catholic which in my opinion is as much a culture as it is a religion I view myself as a sceptical, questioning Catholic. Which to most Catholics kind of goes against what being a Catholic is. You're either in or you're out. Fish or cut bait. But it's never been that simple for me. When I think of my Catholicism I think of that great line from one of the Godfather movies where Al Pacino in speaking of the mafia says "I keep trying to get out but it pulls me back in." I believe my issues are primarily with Catholicism not with God but as I mentioned I've recently had some very interesting discussions with friends about God and if, where or how he fits in when it comes to things like tragedy and illness.

My father has a cousin who lost a grandson to Lesch-Nyhan syndrome (LNS). It is a rare, inherited disorder caused by a deficiency of the enzymehypoxanthine-guanine phosphoribosyltransferase (HPRT). LNS is an X-linked recessive disease-- the gene is carried by the mother and passed on to her son. LNS is present at birth in baby boys. The lack of HPRT causes a build-up of uric acid in all body fluids, and leads to symptoms such as severe gout, poor muscle control, and moderate retardation, which appear in the first year of life. He went to Duke for a blood cord stem cell transplant and didn't make it.

I went to the wake with my parents and granted the families grief was raw and new but I was amazed by their faith. If I had lost my child at 18 months after prolonged suffering I think I would be angry with God. What kind of a God lets things like this happen to innocent little children. But does that view God more as puppet master?

A friend told me about a friend of a friend who has stage 4 lung cancer and has made peace with God and felt like she's gotten her family to a good place so is ready for the inevitable. I don't feel a need to make peace with God because I do not believe we re at odds.

If there is a Supreme Being, whatever you may call him I believe he/she/it puts us here and we are given free choice. Stuff happens good and bad we deal with it the best we can. I don't believe our lives are orchestrated by a God, therefore I'm not sure I was put here for a reason as some have asked. Is there a final reward for good choices or behavior? As Hemingway says in the last line of The Sun Also Rises, "Isn't it pretty to think so." But in all honesty I don't know. I don't have the kind of faith or certainty that I see in others. I am awed by it. I admire it. Let me be clear though, this doesn't make me sad or leave me feeling wanting or lacking.

Several people have asked me if I've had any great epiphanies since my diagnosis. While my views on some things have changed, like how I want to spend my time or what really matters to me, my feelings regarding God and religion have not. I don't blame him and I don't expect him to cure me. So I try and live the best life I can live which I think is pretty much what I was doing prior to this illness just maybe with a little more urgency now. That said, if my views regarding God and religion haven't changed why would I expect someone with deep faith to change their views?

So I ask again, where does God fit into all this and I guess the answer I come up with is where you need him if you need him.