Thursday, March 01, 2007

Shaking Hands With Disappointment

"I'd like to shake your hand, Disappointment. Looks like you win again." Excuse my theft of the Neil Young lyric, but there is no other way to describe the feeling today, when advised by Dr. Rifkin that the inevitable is upon us--a return to chemo. While we don't have the numbers from today, the trend is such that he is "worried". I suppose there is a chance that the numbers report on Monday could turn the other way and hold off treatment, but there was not much optimism about that being the case. The trend is upward with the IGGS, as well as the M protein, two critical measurements. Rifkin wasn't ready to talk in much detail about the options. We have an appointment in 3 weeks, to review options, data, and to plan the course ahead. The appointment is on March 22, a mere 2 days before the 2 year anniversary of the diagnosis. I will be doing my homework so I can make a recommendation to him. It will likely be velcade and some other drug, either a steroid or another chemo drug. God, he must hate me as a patient!

I'm having more difficulty handling the news than I would have expected. Despite the prostate surgery, and the recovery from that, this past 6 months has been a welcome return to some routine in our lives. I have been able to keep out thoughts of returning to treatment and generally enjoyed most of my days. Now that a return to treatment is likely, all the memories of being on chemo flood my mind. Stated simply, it's just no fun. Can the family handle more 'roid rage? And of course there is concern that treatments won't work and we'll face more difficult decisions. The mind loves the drama. I guess I'll have to get my mind back into shape to steele it from these flights into the valleys of pessimism.

But to give things a different perspective: A year ago I was bracing for yet another transplant, using the stem cells from one of my brothers. Through that lens, today seems OK. I told Suz today I need my two days to get over this news and get my head screwed on straight. I'll come around soon. In fact, as I write this to my silent bloggers, I start to feel better already. The connection this blog has given me to so many people around the world continues to lift my spirits. The wonders of cyberspace.

Next week Susan and I will be in Scottsdale, AZ. My friend, Joe Epstein, whom I'm mediating with, offered us his home ithere. All this was planned before we had today's news. We must be in sync with something. So that will be a nice respite before life turns more difficult. Joe has been a godsend. He has kept me as busy as I can be this month with mediations, which is a tremendous help with the dental bills, health insurance, etc. Plus it gets me out of the house and gives me something to do. I continue to be amazed at how our friends still take care of us.

We are experiencing first hand the country's health insurance crisis. Because my health insurance is keyed to my employment and there is always the risk of my not being able to work at all, losing my health insurance and having to go on Medicare, we've had to get Susan and Julia on a private policy (so she wouldn't be without insurance if I went on Medicare). Not surprisingly, at her age, she has a few health issues, which the new insurance company has used to increase the standard premium by 75%!!! But we had no choice. We are glad her insurance is no longer linked to my employment, although we pay dearly for it. I don't know what people do who don't have the means to handle these costs. No, I do know what they do--they don't have insurance.

We are doing OK. We will let you know what we learn at the 3/22 appointment. Stick with us. We will continue to enjoy life, despite today's news. We've dealt with worse and we still love our life and all those wonderful people who fill our lives with such joy.

Neil Young ends his lyric about meeting disappointment with this, "But this time might be the last." He goes on to say, "I'm savin' the best 'til last; let's leave this all in the past." Yes, maybe this disappointment might be the last. And if it's not? Well, we will continue with this journey. Love to all,


Lynne said...

I'm so sorry about the news. Were I you, the disappointment would overwhelm me. But, here you are, writing about it! Stay strong, Dan. I am praying for you.


Arlene said...

Hi - that's all - just hi!

Dorothy said...

Hi Dan and Susan. Just checking in to let you all know we are here for you! This is a journey we all have taken together and we are all here for all of you! The Seal Family

Big Frank Dickinson said...

Here's another view on the whole deal from our friend Neil:

"We've been through some things together
With trunks of memories still to come
We found things to do in stormy weather
Long may you run."

Love -


Shawn and Jaike said...

Read the news and can not imagine how upsetting this is.
We love you .

Howie said...


Sorry to hear the news. Just wanted you to know your in my thoughts and prayers. Have a good time in Arizona, wish I could join you.


Dan's Mother said...

Being a swimmer maybe this analogy will spply. You dive into deep water and struggle for a while to get to the top. Then you have to swim until you get to the edge and then you climb out. I love you,Dan, and pray for you every day and night. Love,Dan's Mother

Sailor Hawkins said...

Dear Dan and Susan,

You all are in my thoughts, prayers. My heart does ache to hear this news. Dan, you are so honest and poetic in sharing your "shaking hands with disappointment". You seem to be entitled to more than a little home-spun rage, not even steroid born. Perhaps at the top of a beautiful vista in Arizona, a little shouting and healing could settle in. Spring is coming and filled with promise. In your mediating and meditating (sorry about the typo earlier), in your shouting and healing, remember you are loved!

Peace & action,


Ingrid said...

Here I am again too. How stupid I have to get on the blog, while living next to your house.
I saw you were back last night from AZ and called this morning, but did not see or hear you or Susan yet.

What a sad blog this time, but still, I believe in you and that you will come through this. Seems to be a long journey, but just hang in there, as you did before.

Hope to see you soon,