I'm melting.

It's hotter than a sack of flying monkeys down here. 

We went to River Market this morning and visited the Clinton library. We drank tons of coffee and then walked around in the heat for a few hours so now I smell like a grande mocha with whipped cream. 

Phil just had an EKG (more heart stuff) and is now in his CT scan. They're checking his face; maybe to see if he really is The AllTel Guy*. He then heads straight to a metastatic bone survey, which is just what it sounds like... they are checking for any bone tumors. A lot of these tests sound like they are looking at the same things, and they are, just from different angles. The process here is very thorough and complete, which is much of the reason we wanted to come here. The data we're receiving through all of this testing will tell us a lot, and we're hoping will also put our minds at ease for the time being.

I'm in the main hospital lobby, which doesn't have the same warm feelings or free food that the myeloma center has but I'm making do with the free WiFi. 

*Around four people have asked Phil, starting when we got on the plane, if he's Chad, The AllTel Guy. AllTel is/was based here in Little Rock so Chad is like a local celebrity maybe? I told Phil he should just start saying that he is indeed Chad. That cute little flight attendant** was all ready to give him an upgrade to first class... but I doubt I would have been invited to come along.

**

__________________

Okay, Phil is done with his face thing and we're now in the waiting room of a different Radiology department for his bone survey. Just to illustrate how they roll here, we walked alllllll the way to the other side of the hospital to check in and the receptionist said, "Y'all are in the wrong place." We started to pull out our schedule and maps and she said, "Naw, I'm just playin'! I just wanted to see the look on your face when you thought you had to walk all the way back!" And then she started laughing uncontrollably.

I told her it is entirely too hot to be cutting up in such a manner.

More later, friends.

Arkansas

Here we are in Arkansas. And here is an artistic representation of my hair:

(It's really, really humid here.)  

Little Rock is surprisingly adorable. I was expecting dirt roads and overalls and a lot less teeth, to be shamefully honest. But I can't even be snarky because everyone is so kind and, yes, there are even fun things to do here, including this, this and even THIS! 

So our first day at the hospital campus was yesterday. We had a bit of a rough start with intake when they wanted us to sign some clinical trial consent forms that were not explained very well, and therefore we weren't sure we wanted to sign. It was kind of like, "Signing this form full of ambiguous legal jargon is voluntary, but not really because you're going to sit in this room until your wife cries and you are frustrated and you end up signing because an additional pull of bone marrow will be much less painful than this conversation we've been having with you for the last hour." Phil initially didn't want me to blog about that experience, but I think it's pertinent information for two reasons:

#1) We learned that we need to ask questions until we're satisfied with the answer we're given. If a document doesn't make sense to us, we're not going to sign it without a proper explanation.

#2) The rest of the day was the exact opposite of that experience.

Immediately after The Consent Form Fiasco of 2009, a sweet volunteer in her late 60s came into our room, scooped us up and swept us off to our first appointment, serving as our tour guide. She zipped us here and there, to and fro, all the while chatting us up and giving hugs to everyone she passed on the medical campus. We quickly observed that this is not like any other medical facility that we've been to (and we've been to a lot). This feels kind of like a hotel, with staff members and patients taking an active interest in each person they meet. I had a valet walk me to the coffee shop this morning when I got turned around, and a lab tech mentioned to Phil yesterday that she recently went to church with a patient for moral support. More than once we've looked at each other in bewilderment and asked, "Where are we?!" We've been that blown away by the genuine kindness of everyone here. Our amazing volunteer and I both cried when we parted ways, and she insisted that she was going to start having a weekly "vegetarian day" in her house. 

But, let's face it, kindness only gets you so far when you have myeloma. So I'm excited to say that we're absolutely stoked about the technology that's available and being utilized to quickly move towards a cure. Here's what they're doing.

Yesterday Phil had a bone marrow biopsy and was a champ. Everyone, myself included, kept trying to talk him into the pain medication but he was insistent that he wouldn't need it. Sure enough, he came out and was like, "That didn't even hurt." (If you know Phil, you know he's not the Tough Guy type, he just has the highest pain threshold of anyone I know.) The bone marrow biopsy will help determine the status of his myeloma, but will also allow his chromosomes to be examined in order to get a more complete picture of what's happening and what will happen with his particular type of myeloma. You can go here to read more about the Arkansas approach.

Then he had a test to check his lung capacity which, when asked for details, he replied, "It was fine. I had to breathe." So no big news there.

Oh, and also he's been carrying around his beloved pee pod for his 24-hour urine sample, which determines protein levels. See?

So on tap today is an echocardiogram to ensure that his heart is in good working order. All of these tests are standard, even for the 28-year-olds. (He is the only one here and is already earning a reputation, as in, "So you're the 28-year-old.") And then later this evening is a PET scan, which we are looking forward to. Well, we're looking forward to getting the results, hopefully by the end of the week. This will tell us if there are any tumors in his body and if so, where they are located. It's fascinating.

So right now we're hanging out in the patient lounge. It's more comfortable than our hotel room, with free snacks, TV and free WiFi throughout the campus. I'm currently lounging in a recliner, nursing my whacked-out neck and waiting for our first appointment and Phil is working on Scoutforce. Of course.

My battery life is waning so I'm signing off until I can swipe my charger back from Phil... more info later!

I don't like Yo Yo's, but no complaints.

Numbers are back up to where they were 3 months ago…snap. I never really liked yo-yo’s and seeing my numbers go up and down is no more enjoyable. I would almost rather them go straight up or straight down; and preferably the latter. Because the numbers almost mirror what we saw three months ago we will remain in a holding pattern. What will break the holding pattern you ask? Go ask a doctor. If you can’t find one, I guess you can start with my ant-brain sized understanding. If I were to break a bone or start to have kidney problems, we would immediately jump on the treatment bandwagon.

In addition to the labs returning to last quarter’s levels; I had a couple of infections. The first infection was just a bug that got passed around my family, but the second one that was a little more bothersome led to me to start taking an antibiotic, which I am currently still on.

So what can I do to fight this disease without treatment? Not sure, but I am going to give up coffee again and continue to dominate water out of my Mason jar. I am looking forward to seeing if we have an emerging scientific discovery on our hands! I am also planning to increase my running routine from one 3 mile run to possibly two runs, combined with some performance training. I also have a desire to become a raw foodist, but I just don’t think that is in the cards right now.

As for Little Rock, I feel like after a frank conversation with Dr. J yesterday, that going to Little Rock would be prudent. The other option is Dana-Farber in Boston, but it seems like they have very similar approaches to U of M due to the relationship Dr. J has with a doc out that way.

So that's where we are at....for now.

M-Spike down a half a point!

After seeing my M-spike on the rise for 6 months I was ecstatic to find out that it has dropped to 2.4 in just over 6 weeks (was 2.9). I am starting to think that coffee accelerates myeloma! I gave up coffee for lent, so in between blood tests I didn't have one drop of coffee.

Also, my IgG is at 3100, which is consistent with my last test. I haven't gotten the full list of results, but the numbers that Dr. J seems to always focus on seem to be coming back more on the positive side; which I guess is considered more on the negative side in terms of disease management :)

Yay.

More Blood Results on the way...yipee!

Heads up…a few more data points on the way. I had some blood work done Tuesday (4/14) just 6 weeks after my last report. Dr. J didn’t want to wait the standard three months to get some new numbers and nor did the engineer in me. The more data, the more I get to play around analyzing numbers.

I heart numbers for those who don’t know me. My favorite is 4, and 4444 is a close second. For the record, I don’t want my m-protein to go to 4 and IgG go to 4,444….although it would make me smile, four a minute.

I'll post the results as soon as I know them...hopefully by Friday.

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

Video Blogs Archive

Below are various video blogs taken throughout our journey:

• Week 1 Chemo
• End of Cycle 2
• End of Chemo
• Transplant Scheduled
• Blue Hair

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. 

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

• Myeloma Mondays #1: Kevin from West Lafayette, IN
• Myeloma Mondays #2: Tim from Bay City, MI
• Myeloma Mondays #3: Jodi from New Jersey
• Myeloma Mondays #4: David from Chagrin Falls, OH
• Myeloma Mondays #5: Sid from Waitakere, New Zealand
• Myeloma Mondays #6: Tim from Westwood, NJ
• Myeloma Mondays #7: Liz from Chicago, IL
• Myeloma Mondays #8: Judy from Flint, MI
• Myeloma Mondays #9: Nick from L.A., CA
• Myeloma Mondays #10: Chuck from Tampa, FL
• Myeloma Mondays #11: Tim from Fairlawn, NJ
• Myeloma Mondays #12: Deborah from Tiburon, CA
• Myeloma Mondays #13:
• Myeloma Mondays #14: Richard from Spring Hill, FL
• Myeloma Mondays #15: Kirk from Russells Point, OH
• Myeloma Mondays #16: John from Oregon
• Myeloma Mondays #17: John from Windsor, Ontario, Canada
• Myeloma Mondays #18: Ed from Manhattan Beach, CA
• Myeloma Mondays #19: Janice from Idaho
• Myeloma Mondays #20: Frank from Brookline, MA
• Myeloma Mondays #21: Dave from Northern California
• Myeloma Mondays #22:
• Myeloma Mondays #23: James from Sydney, Australia
• Myeloma Mondays #24: Katie from Houston, TX
• Myeloma Mondays #25: Shaun from East Lansing, MI
• Myeloma Mondays #26: Ernie from Wake Forest, NC
• Myeloma Mondays #27: Beth from Houston, TX
• Myeloma Mondays #28: Matt from Columbus, OH
• Myeloma Mondays #29: NY Fan from New Jersey
• Myeloma Mondays #30: Beth from Houston, TX
• Myeloma Mondays #31: Samantha from Auburn Township, OH
• Myeloma Mondays #32: Chris from Plainfield, NJ
• Myeloma Mondays #33: Cherish from Dubai, UAE
• Myeloma Mondays #34: Dave from Westerville, OH
• Myeloma Mondays #35: Lisa from Middletown, MD
• Myeloma Mondays #36: Joe from Kenilworth, IL
• Myeloma Mondays #37: JoAnne from Moore, TX
• Myeloma Mondays #38: Jean from Brookline, NH
• Myeloma Mondays #39: Jody (age 34) from Baltmore, MD
• Myeloma Mondays #40: Geert (age 42) from Hamburg, Germany
• Myeloma Mondays #41: Jeff (age 42) from Salisbury, NC
• Myeloma Mondays #42: Tanner (age 17) from Ft. Worth, TX
• Myeloma Mondays #43: Emily (age 39) from Austin, TX 
• Myeloma Mondays #44: Carole (age 64) from Marysville, WA 
• Myeloma Mondays #45: Tim (Age 42) from Geneva, IL 
• Myeloma Mondays #46: Greg from Saranac Lake, NY
• Myeloma Mondays #47: Mark (age 19) from West Orange, NJ
• Myeloma Mondays #48: Brad from Westfield, NJ
• Myeloma Mondays #49: Who's next?

***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.

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. 

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.

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