multiple myeloma for dummies: March 2009

Thursday, March 26, 2009

Strides For Hope

My dear friend and neighbor Barb is the executive director of The Wellness Community of Southeast Michigan. The Wellness Community offers free information and services to cancer patients and their families. When we met Barb, her husband Brian and their adorable son Oliver we had no idea that Phil would be diagnosed with cancer 16 months later.

Barb has always been a great friend, but her experience with other cancer patients and their caregivers has made her like super-friend since Phil's diagnosis. She and her co-worker give me all the latest information that they find on Multiple Myeloma, including support groups and seminars. Barb also notices when I've lost too much weight due to stress and brings over awesome Middle Eastern food to fatten me up. And of course she has offered the services of The Wellness Community to our family, and I have assured her that we will take advantage of them the moment the need arises.

On April 25th, Barb will be running in the Strides For Hope marathon which benefits The Wellness Community. She asked me if she could run in honor of our family, and of course I was deeply touched. Because I am so inspired by and grateful for what The Wellness Community does, I asked Barb if I could post this here to try and raise some funds for her. All donations will go to benefit The Wellness Community. Below is Barb's email to her friends and family; I am posting it with her permission.

Hello friends and family,
As many of you know, I have decided to participate in Strides for Hope, a charity marathon training team that raises money for people touched by cancer through The Wellness Community. I will be running the Nashville Country Music half-marathon (13.1 miles - and I'm sure by the end that .1 will feel very significant!) on April 25th. This will be my first marathon event, and I've been training really hard to work my way up to that many miles!

Since this is a charity marathon, part of my commitment is to raise money to support The Wellness Community - a program that provides support, education and hope to people touched by cancer. I've had the opportunity to be involved with The Wellness Community for nearly 2 years now, and it is really such an amazing organization. The Wellness Community provides support groups, exercise and stress management programs like yoga, tai chi and meditation, and educational opportunities - all free of charge for people with cancer and their loved ones. I will be running the race this year in the honor of our friends - Phil, Cassie, Ocean and Iris Brabbs. Phil Brabbs was recently diagnosed with multiple myeloma. Phil and his wife Cassie have 2 kids - ages 1 and 3. Phil is healthy and energetic....and the last person you would expect to share news like cancer. Cassie and Phil are two of the strongest people I know....and the attitude they have accepted in facing forward has been incredibly inspiring. I could not be more proud to run in their honor. I have set a goal of raising $1,500 - and I am reaching out to you to see if you can help me reach that target.

I understand that not everyone will be able or willing to donate, but if you can contribute to my efforts, I would very much appreciate it! You can give online - this link will take you right to our donation page. Be sure to write my name, Barb Hiltz, in the "Designate my donation" field, and the money will be directed to my efforts. For those of you in the US, your gifts are tax-deductible.

Thanks for considering this everyone! I hope you are well,
Barb

Friday, March 20, 2009

Video Blogs Archive

Below are various video blogs taken throughout our journey:

Saturday, March 14, 2009

Arkansas...maybe?

Little Rock anyone? So after receiving the news that my levels are steadily on the rise we think that journeying to another land to get a second opinion is probably a good option at this point. I would prefer to just karate chop every myeloma cell in the face, but I was told they don't have faces....those sneaky little bastards.

After a few conversations with folks who have been down this path themselves or with their loved ones, it's clear that one of the world's center of excellene for MM is located in Little Rock, Arkansas. I would have preferred Hawaii, Sarasota or possibly San Diego, but Walmart's Sam Walton who died of MM, was from Arkansas......so Little Rock here we come...maybe.

We still have to run this all by our insurance provider to make sure they will support our decision; otherwise we may have to consider selling Ocean to the circus, although I think he would do quite well and maybe we should consider that even if we don't go.

Make sure to say a little prayer for my Wolverines tonight...they are definitely a bubble team for the NCAA tournament. If they get in, maybe they will get some extra cash to buy my hot new software that is going to hit the market this April.

Sunday, March 8, 2009

Myeloma Mondays Archive: Survivor/Patient Stories

Click on the links below to view the stories of others journeying with Multiple Myeloma:

***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story! -Phil

Help grow the DomiNation. Learn how by clicking here.

Friday, March 6, 2009

Got CRAB?

So to dove tail on Cassie's last post I will provide you some other valuable data from our appointment with Dr. J.

I asked Dr. J and our wonderful P.A. what is going to lead me into the "Oh sh** we better start doing something about this disease" category? I wasn't that blunt, but all be honest with my MM readers and say that's where my head has been of late; Cassie's too.

Dr. J first said that the standard protocol is to observe the C.R.A.B. test. My fellow MM blogger Don describes this better than I will ever in one of his blog posts if you want the details. In dummy terms that I can understand is that the CRAB test fails if your bones or kidney start to take a beating; or you show signs of anemia.

Being the numbers guy that I am, the whole CRAB test is helpful, but what about the M-spike, IgG and Light Chains that get so much attention? So I pushed Dr. J to tell me at what IgG levels do we start to say: "It's time to drop a nuke on these guys." In MM For Dummies language the nuke is a simple translation for some rounds of drug therapy to reduce the disease, followed by chemo drugs and the final step of a stem cell transplant; in other words, reduce the suckers, take out the good guys, kill all the suckers and good guys, replant the good guys, hopefully the good guys reproduce and the suckers stay at bay.

Dr. J's answer was 5,000. Currently my IgG is at 3,000 and showing a steady climb. I plan on pulling all my data points (3 or 4) and charting them for our readers, but I think at diagnosis I was around 1800-2000, but I am not sure. Assuming a linear progression this time next year I'll be at 5,000. The tricky part is that Myeloma runs its course differently in everyone, so the time and more data will more accurately paint a picture that we can react to.

In the meantime, we are considering a trip to Little Rock, Arkansas for a week's stay in one of the Center's of Excellence for Myeloma research and treatment resides. Several signs have pointed to Arkansas, so now I just need to call my insurance and confirm that I won't have to sell my first born to pay for an additional opinion.

Tuesday, March 3, 2009

Appointment

Today was our appointment with Dr. J. It was decided that Phil will repeat his blood labs in six weeks to see what's going on. I don't have the energy to elaborate any more, but maybe Phil will expand on this a little more when he gets some time.

I guess you could say the overall takeaway is that things aren't bad, they aren't good... they just are.

Monday, March 2, 2009

Sinking in to the present...

(This is Phil speaking)

At the start of my work day I was saddened to find out that a co-worker of mine about several cubes down suddenly passed away yesterday after just 10 days ago contracting some virus which put her in a coma. One of my work colleagues who was shaken up by the news said this to me in the hall: It's times like this when you consider your own mortality and start to wonder if you have made a difference; if you have made a dent in the world. Wow.....

I don't know how you feel about your own death, but I always thought to come to grips with your own death is something you do at age 88; not now, definitely not now. It reminds me of when I was a kid trying to figure out the whole "God-Religious-thing". I used to tell myself that I would figure that all out when I was married with a family.

Death is obviously very real for everyone and it can be frightening to consider; but I am starting to think that death is more of a companion than an enemy. There's something about considering your mortality that brings clarity to the soul. For me it's like when I am standing atop a cliff and I shudder at pairing over the edge to catch a glimpse of what I know is a magnificent view. Eventually I am able to calm my nerves, if only for a moment, and sneak a glance of nature's majesty before I scurry back away from the edge.

I left work today filled with joy at the possibility of seeing my children again and talking with Cassie about her day. I for the first time IN A LONG TIME started to experience all the abundant joy that is available in the moment. I am thankful that I am in a position now where I am gently being pressed to consider each day as a gift and that I am able to get closer to the edge of the cliff to enjoy all that is beautiful and made to be enjoyed.

"This is the day the Lord has made; let us rejoice and be glad in it." -Psalm 118:24