Pre-treatment reflections. Brought to you by PBS Kids.

I have a few moments to blot a few things down (blot = blog + jot... I just made that up) because I have a free moment I'm blatantly ignoring my child. (Hey, judge all you want... my 21-month-old is learning Spanish via Dragon Tales and I am maintaining my sanity. Everyone wins.)

So obviously, treatment begins soon. We're getting things ready around here, trying to prepare ourselves as best as we can. But we're also having to prepare a couple of kids who know nothing of cancer or sickness or hospitals. (Well, except for that one time.) We've decided to keep Ocean enrolled in preschool despite the germ factor, but have notified the appropriate folks at the preschool that we will likely have to pull him out temporarily once Phil has his transplant. I want things to proceed normally for the kids, and since we've been talking about school with Ocean for a long time it would break my heart to tell him he can't go. Plus, as my dear friend pointed out to me yesterday, I'll definitely be able to use a few hours a week with just one child, and it will be good to separate the kids a couple mornings a week, being that they butt heads so readily and emphatically. We've started telling Ocean that Daddy will cut his hair soon, and we talk about how Daddy goes to see his doctor in order to stay healthy so that he can keep playing soccer with Ocean. It's all very casual at this point, but it's setting the stage for more serious discussions, should we need to have them.

So that's that. 

And now, please climb aboard the Emotional Journey Express as I take you through the last 24 hours worth of thoughts in my mind. Scary, I know. Buckle your seat belts. And put on a helmet.

Yesterday we learned of someone who was diagnosed with lymphoma. My reaction wasn't as strong as I expected it to be, which bothered me. I began thinking back to each time I have received news that someone was diagnosed with cancer and I can remember feeling overwhelmingly shocked and afraid and sad. And while I still felt sad this time, I didn't feel much of anything else and I stewed about it all day, trying to figure out what was different here.

And then somewhere between making a pasta salad and trying to win another coupon on Old Navy Weekly it hit me. Our innocence was lost with Phil's diagnosis. We quickly realized that no one is immune and no one is safe and no one lives forever. Our bodies fail us and we can blame people or the environment or society or science or God or the devil or whatever but that doesn't stop the sickness or the pain or the death. At some point this all ends. Which is a crappy conclusion to come to when we're 29-and-holding and should be thinking about shallow selfish crap like what we're doing this weekend, or ridiculous parental crap like how to hide vegetables in cheese or chocolate milk, or fairly significant crap like supporting friends who are going through different but equally pressing situations, or everyday crap like washing dishes and paying the bills. All of those things still go on of course, but we exist on a different plane now. The plane where we grew up faster than we wanted/expected to and are no longer surprised when we hear terrible news. 

So then I started thinking about all of you, each of you, the people in our lives, and how you must have felt when we shared our news with you. And then I cried, because I remember very well what it felt like to hear that kind of news, back before it was our news to share, and I wanted to hug each of you because I know- I KNOW- it's a hard burden to bear. And you all have stood by us despite your own fear or sadness or anger or shock or not-knowing-what-to-say-or-do... and that's awesome. And very, very hug-worthy.

And then I started to remember how lucky we really are. Not the cancer part... we drew just about the shortest straw possible there. But most people with multiple myeloma are diagnosed at a later stage and thus need to begin treatment right away which is not the case with us; and for that we are grateful. We're pretty darn fortunate to have known about this for a year. I'm so glad we've had plenty of time to allow everything to sink in. I'm relieved that we will have had a couple of months to prepare ourselves for treatment to begin. And that I have time for this introspection and reflection. Most importantly, I'm glad we've had time to find hope in what was initially perceived as a hopeless situation. We're in a good position in spite of our circumstances and, while I've had a difficult time reconciling all of this with my faith in God, I can't deny what I recognize to be a little extra help from him in a less than ideal situation. 

It's hard to write a blog post about Feelings, not because I fear being vulnerable (If you know me, you know I hide nothing and I tend to over-share to the point of grating awkwardness. It's a gift, really.) but because I don't want to come across as a Susie Sunshine or a Martha Martyr or an Ursula Unstable as much as I just want to document this process, for us but also for anyone else who is frantically Googling (or, if you're cool, Swagbucksing) "Multiple Myeloma" like we were a year ago, trying to find an ounce of honesty or hope or reality or... something. Something.

The problem with writing it down is that it's hard to get across what's really going on internally, mostly because it changes all the time. I guess the takeaway is that I still don't see a grand Purpose in any of this, and maybe I never will. But thankfully we're Take-One-Day-At-a-Timers so that doesn't even matter. We're just continually putting all of this in our Life Lesson Bank and plugging ahead, powered by all of the Love that surrounds us.

That, dudes, is one lesson even PBS Kids can't teach.

Hope you're all shiny and happy.

I consent.

Tomorrow at 7:45am I will consent to a clinical trial that is almost all filled up (two more spots left).  This will secure us a spot for when we return back from our family vacation in North Carolina. Yipeeeee.....free chemo drugs! Thanks MMRF! 

I still can't imagine a shaved head.....weird. 

Time to work on my Kick!

(Phil speaking)

I think about my cancer about .00138% of the time, which is probably aboutt 1 minute every 13 days give or take some math. The reality is that the cancer is present in me roughly 100% of the time looking to find its way in my body, primarily my bones. 

If you have been following along you know that three years ago (Aug 2006) while living in Charlotte, NC we were caught off guard by a Pulmonary Embolism in my right lung, which can be very deadly. The following year after a return to Ann Arbor I had two more blood clots, one in my left leg and a second in my right. Two years after the PE (Aug 2008) we learned that the recurring blood clots in my body had a partner in crime called Multiple Myeloma, a cancer of the plasma cell that originates in the center of your bones. And now three years later (Aug 2009) we have learned thanks to some help from our peeps down at UMAS hospital in Little Rock that the cancer isn't smoldering, but actively spreading. What's with the month of August anyways?!?! Can't we just reserve this month for the good news of the birth of Phil??? ;)

I have heard it is good to keep your mind off of your disease so you can continue to live your life fully and I guess that is what I have been doing naturally. I mean who starts a business during the worst economic times just months after they find out they have a serious cancer stewing around? I think it's in the core of my DNA to keep dominating because it's all I have ever known.

So what about dominating cancer? Well, since the blood clots and the diagnosis I have naturally not thought about the health issue staring me in the face, partly because I still feel great! The reality is that over the last year the cancer went from just over 10% in my bones to 30%, so it seems to be doing just great too! 

I am sensing that it's time to kick it....what do you think? I have been much more conscious about eating colorful vegetables, which is harder than you think for a vegetarian with the assortment of carbs that flow through a supermarket. Cassie has been a champ though and I am eating better than ever! So the diet is where it needs to be and I have returned to dominating water which is really crucial in keeping my kidney from getting wrecked by the excess protein (and potential calcium) floating around in my blood stream. 

Sooooooo....to start kicking it, I am going to go back to my roots and work on my kick. Not my football kick, but my running kick. Thanks to my running buddy, I have been consistently running one day a week. To put my feet to the fire I officially signed up for the Big House Big Heart 10k run on 10/4, which  may be my last weekend of my treatment free self!  I still have the belief that my disease can be supernaturally dominated and we have a couple of months for that to happen!

If you ever want to go for a run, just give me a ring! I have a lot of work to do....and I can't do it without the influence of others. Thanks!!!!

A recap for those who are just joining us.

I'm going to give the run-down of the last year, just in case someone is joining us for the first time here. You can most easily stay connected to this unfolding journey with over 11,000 people through Facebook by clicking here, then clicking "Like". We also use the Cancer Kicker Foundation Facebook Page as the forum to share stories, questions, encouragement, hope

and stay connected.

July 2006: At age 25 Phil gets a pulmonary embolism and is put on the blood-thinner Coumadin.

2007: Phil gets two more blood clots, this time in his legs, after going off of Coumadin. He goes back on both times. All genetic testing to date returns negative...no one at this point knows what is causing the blood disorder.

June 2008: Several friends recommend seeing a hematologist. Eventually, we ask for a referral and get one to a hematologist and are sent to the University of Michigan and testing commences.

Beginning of July 2008: Phil's tests for genetic abnormalities such as Factor V Leiden come back negative. Phil's total protein is slightly elevated. Like a tenth of a point. The hematologist refers him to an oncologist. Wha-wha-what?

End of July 2008: The oncologist does more testing, including a bone marrow biopsy. He mentions MGUS and Multiple Myeloma as possible culprits (we'd never heard of either one), but believes we're dealing with MGUS. Doctor goes to Poland for two weeks as we get the results back from the lab. Our med student friend helps us interpret the results... 11% plasma cells in the marrow, which means smoldering myeloma, not MGUS.

August 2008: We get the official word from the oncologist that this is, in fact, smoldering myeloma. Other than the blood clots, which no one will claim are a result of his myeloma...yet, Phil is asymptomatic so the plan is to watch and wait (review blood work every 3 months). We are told that perhaps it will take several years to begin progressing, and others tell us it may not progress at all. Google tells us Phil has less than five years to live. Phil celebrates his 28th birthday.

July 2009: We traveled to Little Rock, Arkansas for a second opinion. It is determined that Phil has several areas of concern on his bones (rib, femurs, several vertebrae, and ilium) as well as a couple of recurring infections, which is now considered by many to be an indication of symptomatic myeloma. His numbers have done a steady climb in the wrong direction. All of this indicates that he is ready to begin treatment.

August 2009: We decide to stay at The University of Michigan for treatment. Then we decide to go on vacation before treatment begins.

October 6th 2009: Phil started chemo treatment of Rev, Velcade, Dex, Doxil (RVDD)

October 9th 2009: First Doxil infusion

October 12th 2009: Week 1 Complete! (watch video)

March 1st 2010: Chemo Complete (7 cycles of RVDD) (watch video)

March 17th 2010: Cytoxan and Blue Hair

March 29-30th 2010: Stem Cell Collection (watch video)

April 5th 2010: Melphalan

April 7th 2010: First Autologous Stem Cell Transplant
April 20th 2010: Released from hospital
June 23rd 2010: Second Autologous Stem Cell Transplant

September 7th 2010: Start of Consolidation Therapy (target 4 cycles of RVD)

October 9th 2010: Phil recognized as the Honorary Captain of the MSU Game (watch video)

November 9th 2010: Begin of cycle #4. Medical staff discusses adding two additional cycles; we decide to go for it. Phil is feeling pretty tired in the afternoon/evenings.
January 2011: Beginning of maitenance therapy, 10mg Revlimid. M-spike at 0.1.

We're home.

Thanks, everyone, for your thoughts and prayers while we were in the great state of Arkansas. We arrived safely home late last night/early this morning and immediately took our 3-year-old out of his bed and plopped him in ours for snuggles. He held my hand while I fell asleep.

Man, I missed those little stinkers. 

I promise to update tomorrow with information; I want to make sure we've spoken with the people we need to speak with first, before I post it all here.

Love y'all. (I can't help it... the south does that to me.)

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