"I Was Standing There On Capitol Hill"*

*With apologies to Dave Frishberg.

Today is the one year anniversary of my last chemotherapy infusion. Somewhere around the very hour that I am typing this, was the "unhanging of the last bag." This Friday is the one year anniversary of the return of my stem cells. Some of the folks in the business call it "your other birthday."

Next week (Friday, the 30th) starts the next round of tests, scans, etc. as part of the 5 year plan. Not a lot of anxiety about it, however since the CT scan is on the 30th, I will be a little edgy about waiting for a call from the doctor's office saying as a result of the CT scans, they want me to have a PET scan. That call would indicate there is something in the CT scan that concerns them. If I don't receive that call within a week, we could be clear sailing.

The following Monday (August 2) is a bone marrow biopsy. The good news (for Annette) is that I have nothing diabolical planned for that appt.

Last night, I attended a Breakaway From Cancer event at the Rayburn House Office Building on Capitol Hill in DC. I was invited by the good folks at National Coalition for Cancer Survivorship. I drew an arrow on the photo pinpointing the approximate location where the event was held.

There were a couple of folks there from Congress. The purpose of the event was to highlight the needs of cancer patients and the tools and resources that the folks who sponsored the event provide to those affected by cancer. There is a wealth of great information available through the organizations involved and the discussion I had with some of the folks present, including survivors, was how to get that information out there at the right time.

One of the survivors described her experience upon receiving her diagnosis as going into a tunnel and feeling the weight of the diagnosis envelop her. For some time, the ability to think rationally escaped her.

I remember that I shut down from wanting to absorb any input about my diagnosis unless it came from a doctor or nurse. I allowed no one to have any credibility that wasn't a part of the medical team. There is only so much you can absorb at the outset.

That's why I think it is important to get previous patients connected with newly diagnosed patients as soon as possible. It doesn't have to be a mandatory thing, but it could be a question that is asked by the medical team ("Would you like to talk to someone who has been through what you are facing?") or by the patient themselves ("Is there someone I can talk to who has been through what I am about to go through?"). Support groups are a good source, but not everyone (myself included) feels like interacting with a large group during the process. I will never forget the kindness of a gentleman from Williamsburg VA who I spoke to before I did my stem cell transplantation. He had been through the procedure and he spoke openly and honestly to me about the process. He also offered encouragement.

I will be working with the Leukemia and Lymphoma Society to be trained as a volunteer "First Connection" resource. Honestly, I wasn't aware of this resource when I was diagnosed. It's the fault of no one, but the various agencies are aware that the information they have doesn't get into the hands of the patient or caregiver at the most opportune time. They are working on how to correct that.

I think to be successful in getting the word out, the effort has to be grass roots and word of mouth. As a result of a personal connection via friends or family of someone who has been newly diagnosed with cancer, I have talked, and am willing to talk, to both patients and caregivers as they go through the journey. I'd like to think I have been able to help.

If you have not personally experienced cancer, but are sharing the road with someone who is going through the cancer experience, the best thing you can do is not to offer advice, horror stories or medical assessments. All you have to do is listen and offer help for what you hear are the needs of the patient. It can be a trial and error process and it won't always be graceful.

However, you will experience grace.