Latest Results, NYC & Letterman?

It's very odd to be diagnosed with cancer and not need to start treatment. Not that I'm complaining. I received a call from my oncologist's office yesterday. I was told my Beta-2 microglobulin levels are normal, at least for now. This protein is found on the surface of white blood cells and is indicative of increased production (or destruction) of plasma cells in the bone marrow. It is an important marker for people with multiple myeloma. So far I'm still at stage I MM, where I hope to remain for a long time. However, I am still starting my bucket list. Top of the list - New York City!

My wife and I will be leaving for NYC in July. So far, we've booked tickets for Rock of Ages and God of Carnage with James Gandolfini (aka Tony Soprano). Checking out the John Lennon exhibit at the Rock & Roll Hall of Fame, taking a ride on the Staten Island Ferry, possible Shakespeare in The Park, viewing the city from the top of the Rockafeller Centre and more. Really looking forward to experiencing the vibe and people of the city, as much as the attractions. Oh yes, and being a recent Mac convert, I will be visiting the Apple Cube store.

I am hoping for Letterman tickets. I've applied, swallowed my pride and wrote to his office asking for tickets, but haven't heard anything yet. Seeing Dave would definitely be huge. Here's to hope.

UPDATE: Just got a call from the Late Show this afternoon! We're going to the Ed Sullivan Theatre to see Dave!!

Obama Fly Swat

A few days ago, Obama swatted and killed a fly that was annoying him during an interview. Of course, someone had some fun with the video clip. In this case, a guy by the name of Mike Relm.

As a tech and media geek, I love how people can take a video clip and make it fun and all their own. Enjoy.



In MM news, my next blood tests and skeletal survey are July 13th with results day on July 21st. All after the big NYC trip with my loving wife, thank you very much. Still at stage I for the moment and hoping to stay there for quite a spell.

Jason Carpenter's Myeloma Video Blog

I ran across a video blog from Jason Carpenter, an MM survivor. At 33, Jason was diagnosed with late stage MM. He created the blog to document his treatment, experiences and to provide updates to family and friends. The videos are help people understand what myeloma "feels" like, from associated pains, side effect of meds, back surgery, chemo and a stem transplant.

I found it very encouraging that his last posting was made on May 9, 2009. Seems he was too busy living to continue posting - that is great news for him, and inspiring for people living with myeloma.

Jason has a collection of his YouTube videos, which you can see here. However, I could not see how to sort them chronologically, so I'm posting the links in order.

Here's hist first clip:



Road to Remission (Videos 2-10 were posted on August 16, 2007)
2: The Diagnosis
3: How People Reacted
4: Dealing with the Doctors
5: My Meds and Their Side Effect

6: How I'm Feeling
7: Puke Time
8a: Doctor Follow-Up Part 1
8B: Doctor Follow-Up Part 2
9: How I Feel/Stem Cells
10: How I Feel/Subway Story

11: How I Feel (August 21, 2007)
12: Doctor Recommends Back Surgery (April 28, 2007)
13: BIG Week for Me/How I Feel (August 27, 2007)
14: Pre-Op Blood Draw (August 29, 2007)
15a: First Cancer Treatment Follow-Up (August 30, 2007)
15b: First Cancer Treatment Follow-Up II (August 30, 2007)
16: What the Shrink Thinks (August 20, 2007)
17: Well-Wishing Strangers (September 5, 2007)
18: A Word on Gossip (September 5, 2007)
19: Big News/How I Feel (September 6, 2007)
20: Back Surgery/How I Feel (September 17, 2007)

21: Back Surgery/Hospital Footage (September 17, 2007)
22: Back Surgery/Hospital Footage (September 17, 2007)
23: Back Surgery/Hospital Footage (September 17, 2007)
24: Back Surgery/Hospital Footage (September 17, 2007)
25: Back Surgery/Hospital Footage (September 17, 2007)
27 Part 1: Not One of My Better Days (September 29, 2007)
27 Part 2: Not One of My Better Days (September 30, 2007)
28: How My Grandma & I Are Feeling (October 9, 2007)
29: New Cancer Levels/Rash/Beard (October 26, 2007)
30: How I'm Feeling (Not Well) (November 11, 2007)

31: How Fam & Friends Should Get Involved (November 25, 2007)
32a: Cancer Numbers Increasing? Lurker? (December 4, 2007)
32b: Cancer Numbers Increasing?Lurkers? (December 3, 2007)
33: Paris/Dominican/Welcome College Buddies (December 27, 2007)
34: Transplant/Primping Out Hospital Room
35: Emotional Breakdowns/Lonely as Hell
36: Bad News Involving a Sperm Bank (January 4, 2008)

Transplant Updates:
Remission (January 9, 2008)
Pneumonia, Stranger in Need, Remission (January 25, 2008)
Bone Marrow Stem Cell Transplant (March 4, 2008)
Autologus Stem Cell Transplant (March 8, 2008)
Recovery Hits Snag: The Common Cold (March 22, 2008)

Sister's 30th B-Day, Go UMass (April 2, 2008)
Advice on Hair Falling Out (April 9, 2008)
Testosterone, Hair Coming Back! Part 1 (April 26, 2008)
Testosterone, Hair Part 2 (April 26, 2008)
I'm baaaaaaaaaack (July 28, 2008)
Sorry for the Lapse (October 23, 2008)

Monthly Infusions (November 5, 2008)
A Video From the Top of the Mayan Temple (May 9, 2009)

Test Results - Whew!

Had my latest oncology appointment this morning, and my myeloma is still indolent for the time being. Whew. Blood test numbers are excellent and there is no indications of secretions into my bloodstream. Although my doctor said it could remain indolent for a "quite a while", I am very aware it could progress to the next stage very quickly. My wife and I were very relieved at the news. As soon as we got home, we booked our plane tickets for New York City, part of my bucket list. The trip is also part of our 5-year wedding anniversary, and we intend on really enjoying ourselves.

I asked him about the odd bone pain I was experiencing in my right leg and lower and upper arms. He said it could be myeloma-related neuropathy, but it could also be arthritis. My mother has been suffering with arthritis for years, and it started in her early 40s. This could be genetic. So what are the next steps? More blood work and another skeletal exam in July. Should the myeloma be progressing, my doctor will call a city hospital to determine if I am a candidate for stem cell and high-dose chemo, and then the real journey begins.

In other news, I've been a fan of The Office (UK) for years, and finally gave The Office (US) a try. I love both of them now, and I highly recommend them for a laugh and a distraction. The writing and dead-pan deliveries are brilliant. If you need a laugh, check out this series. Case in point (from the UK version):

Local Relay For Life on June 6th

My town's Relay for Life cancer fundraiser is this weekend. Relay for Life is a 12-hour event in support of loved ones who have cancer, and in memory or its victims. People raise money from sponsors and walk around a track in 1-hour shifts. There's music, friends and spirits are high. "Luminaries" (candles) are purchased and lit in memory or support of loved ones. I've been a participant for years, but this is the first Relay since my diagnosis. When my wife asked me if I wanted to go to the Survivors' Dinner and Victory Lap, I respectfully said no.

I am not in denial or embarassed about having cancer. I know I have myeloma, and have accepted that I will have to live with the disease. My wife said from the minute I was diagnosed I was considered a survivor, but since I've yet to start treatment it doesn't feel that way. I just don't feel I've earned the right to walk amongst the survivors in the victory lap. Another reason is that I don't want the attention it may bring as poeple find out I have cancer. To my knowledge, few people in my town and few colleagues know I am "ill", and that is fine with me. Or, maybe they do know, and aren't saying anything because they are uncomfortable or just hate my guts. I am not dwelling on the possibilities.

I will be there on June 6th as the Survivors take their walk around the track. I will cheer them on and feel for and with them. I will take my scheduled walk from 3-4 a.m. (ugh, what was I thinking). Maybe next year I'll join the Survivors. Should I start treatment by then, maybe I will feel differently. My next oncology appointment is on June 9th. I will get the results of blood tests and learn if myeloma has progressed enough to start treatment, or if I can take a free pass for another two months. What a life.