First Entry, Goals and Update

This blog is about me and my family and our journey with Hodgkin's Disease.

But I will be very disappointed if that is all that it is. I also want this web site to be about you.

If you are a cancer patient or the family member of a cancer patient, I hope that you will gain a little insight into what may lay ahead through my experiences. I hope to show that there is a lot of good in the world despite cancer!

We all have stories, we all have matters that we must overcome. That's why I tell my stories. To show that despite cancer, the story continues. (And do you know what? Even when things are difficult, even seem dire, you never know the end of the story while you are living it. Keep living your story fully! That is also what I mean about "Paint Your Moment.")

I have started this web site to help me keep the important matters in life in perspective and to share that with you. If anyone has questions or concerns about their own experiences, if you like, email me. I will try to respond quickly. I don't have all the answers, but I do have a fair amount of experience now. Also, make sure that you share your burdens with the people around you who love you. They are going to bear these hard times, anyway. It will be easier to do together.

So, an update about me.

I had my most recent CT scan on June 6. It showed several nodules through the chest. I'll omit the specific medical details. The largest of the nodules is 2 cm right now. That is not very large, so yahoo.

Dr. Leming has decided to not to try to cure my HD right now. Given the recurrences, he believes that the therapy could cause substantial harm without a corresponding likelihood of permanent remission. One of the biggest drives in treating HD (according to what I have read) is how to avoid damaging the patient as much as possible. So, we are going to try to manage the HD long term. We will let it grow a while, then treat it a while, then let it grow a while, then treat it a while. Treatments will include chemotherapy (maybe vincristine and cytoxan) along with an anti-body therapy called Rotuxomab (Rotuxan). Rotuxan targets CD-20 cells (a cell type that comprises a substantial part of the tumors involved in my kind of HD.) Dr. Leming feels that given the development of genetic courses of treatment, that it is likely that genetic therapies for my HD will be developed in the next 10 years or so. So, the plan is to maintain.

I like not having to have chemotherapy right now...duh. I'm trying to get stronger.

But I hate not working toward a cure. It is out of my character. Normally, I see a problem, and I attack it.

I think that may be a pride issue. I think that God may be telling me that I am going to do things His way, on His schedule. I think He's also telling me that I can't do things on my own. I have to rely on others. That is a very difficult lesson.

So, here I am. I may be writing this blog for a long time.

But, what worthwhile course do any of us set that is apart from God's will?