Monday, July 20, 2009

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 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.

Saturday, July 18, 2009

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.)

Wednesday, July 15, 2009

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.

Monday, July 13, 2009


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!