Day +36

I have reached day +36 which means 36 days post transplant that occurred on April 7th. I met with my BMT doc on Monday and I also had my catheter removed. I will receive my "numbers" on Friday which will enlighten us a little as to how effective the transplant was, although I was warned that the true results won't be fully realized until day +60. We are looking for my M-protein to hit zero....which is where it is for someone without MM.

In stead of trying to find the words in my chemo brain to help describe how I am doing, I thought I would just get real and go with video. Before you hit play, I should mention that my Myeloma buddy, Jodi, had a WBC count of 1.0 yesterday at Day +21. That is HUGE because her bone marrow biopsy showed that the stem cells didn't graft. She's not out of the weeds quite yet, but this is a very positive sign. Thanks everyone for your prayers.

P.S. I'll try my best to get Cassie to appear in the next VLOG. She's looking mighty good for having just had a baby and is well worth showing off to the WWW.

Baby Drama

Being young with Multiple Myeloma presents some really difficult challenges. One of the biggies is that for men, chemotherapy followed by a stem cell transplant will most likely make you sterile. That means no more biological kiddos once this is all said and done. Knowing this, we took a chance at our two month window and got pregnant right away, which was pretty miraculous. The pregnancy is going well and it looks like the Brabbs kiddo count will make it to 3 (Ocean, Iris, Girl Child-to-be-named later).

Here's where the baby drama comes in to play. Due to all the additional rounds of chemo (RVDD), the first transplant is looking to hit a few weeks before the due date. The first issue with moving forward with the transplant before the birth of girl #2 is that we could run into the problem where Cassie goes into delivery at 38 weeks which would leave me behind to watch online courtesy of Skype or iChat. To add to the difficultly, just last week the Doc said that he does not think I should be returning to the hospital for the birth immediately after transplant due to my lack of immune system. Therefore, their suggestion is that if I want to be there for the birth, then continue to soak in chemotherapy (RVD) until the baby has arrived and then go in for my bone marrow transplant. Today we meet with Dr. J and we really want to see whether or not I could go up just for the delivery in my space suit and then return home.

The latter option seems much more difficult on our family given that Cassie will be caring and nursing a newborn while her hubby is on his back a few miles away at UMHS. My preference would be to get the transplant out of the way and start the recover process before the baby has arrived. There is definitely no right answer here and unfortunately for us most people diagnosed with MM are in their 60's so there isn't much to lean on in terms of folks who have gone down this path before.

Two roads diverged in a wood, and I— I got tossed down the one less traveled by, And that has made for a roller coaster of a journey.

What to do....????

P.S. Today's stars Cycle #7 of RVDD...time to return my 24 hour Pee-Pod

Cycle #6 Underway...

We started Cycle #6, albeit there was a little delay today when Dr. J wasn't sure if I was going to take a break between cycle 5 and 6 to do my stem collection. The final verdict from Dr. Perez who heads up my transplant team is that he would prefer that the MM be reduced to the lowest possible level prior to transplant; assuming my blood counts are still in good standing and I am doing well.

Cycles 3, 4 and 5 were very uneventful in terms of side effects and I am actually reporting that I feel better today than possibly prior to beginning treatment, if that's even possible. We will find out the results of Cycle 5 on Thursday and I'll be sure to report out via this blog. Dr. J and went ahead and put Cycle #7 in the books, but whether we more forward with it will largely depend on Cycle #5 results. Part of me is ready to move to transplant so I can get on with my life, but I realize patience is key in tackling MM.

Cycle #5: Much of the same...

Just a quick mid-cycle post. After I finally decided to have folks pray for me following my 12 day bout with projectile vomiting and 6 days of not being able to hold down even a teaspoon of water, my body has bounced back. I can't explain it, nor can the Docs. I was literally heading towards hell and no drug could stop it. Isn't it funny how many people only turn to a hirer power when things get really, really bad. I am hoping my kids don't follow suit when they are older and only call me when they need bailed out!

News on the transplant #1 front and other happenings:

• All my tests, labs, doc meetings, cytoxin infusion, and harvest are on the books. Cells will be pulled mid-Feb
• High dose chemo and transplant still not scheduled; waiting on Cycle #5 results
• I purchased Rock band for the Wii and will not break it open until post-transplant. Video games is totally out of character for me...thanks cancer for allowing me to be a kid again.
• Maize and Blue hair dying will probably happen the first week of February!
• Cassie is still holding up like a champ, but her belly is getting huge! 3 more months until baby #3 is here!

Praise:

• Cassie for putting up with my dex ideas and being somewhat of a single parent during this time
  
• Family for watching the kids during my infusion, getting genetic testing done and all that other good stuff
• Friends for continuing to bless us with at least two meals a week...unbelievable
• My new MM friends who unfortunately are given the horrible fate of MM, but can join the hope train with us
  
• Michigan Faithful for continuing to show your support
• Dr. J and BN for providing the best medical support and growing friendship
• ..and God...I'll try to call your name out on some of the high moments, although it's easy to forget
  

Cancer allows you to be a dreamer. Or maybe it's the Dex.

So I am naturally a dreamer and over the last few years I have learned to apply my visions and make them into a reality. Early on in my marriage for every 10 ideas I brought home to Cassie, there were probably 10 more I left on paper in my car. The first big dream that came true was our Old West Side home that I designed and built all under six months, while transitioning to a new job, introducing our second child to this world and living with the in-laws (who are awesome for more reasons than I could list here). The home is charming, spacious and fits the character of the almost 100 year old neighborhood. What a dream.


Immediately after the diagnosis of an incurable blood cancer, everything slowed down for me. I started thinking more practically as I started to run the "what-if" scenarios over and over again. The first thing I decided was my dream home had to go. I could not fathom Cassie being stuck with two little babes and a mortgage that would put her more than six feet in the ground. So we listed our home and although we had a lot of interest, our home did not include a garage (yet) so buyers would not pull the trigger. Actually, right before the start of treatment we thought we came to terms with a buyer, but they eventually walked at the thought of having to build a two car garage.


So we remain in our home, but the dream has definitely changed since diagnosis. Although our house is situated in one of the most desirable locations in Ann Arbor; walking distance from Jefferson Market, Washtenaw Dairy, Downtown A2, the Big House and a stone's throw from one of my favorite parks, it still doesn't seem to completely fit our evolving dream. Even with the best porch on the Old West Side. Seriously, nothing compares to living six blocks from the Big House on a football Saturday, tailgating from the comfort of our home, watching the game from the cable jack on the porch. (My little stroke of design genius.)


One thing cancer has taught me and apparently my Cancer Kicker friend as well is that forming a team or what I would call community is critical in difficult and challenging times. But why just difficult times? Why does it take a cancer diagnosis in order for neighbors to feel comfortable enough to drop off desserts and friends the ability to drop in and say hi while providing dinner? I have my theory about where society has been and where it is and where it is going, but I am far from getting my PhD in Sociology (I haven't even had a college course in English, let alone Sociology), I was one of the four fools on the football team to spend my non-football practice time up on North Campus at Michigan.

To the left are the only football players stupid enough to study engineering. Yes, I was the only one in my class to graduate from the School of Dorks.

So our desire is for ongoing community; free of the busyness of American life which offers us black Friday, fast fried food and attached garages that close out the world and the neighbors upon entry. Since listing our house I was powerless to resist seeking out the next dream. So for the last year I have been searching for land like those who expanded the western frontier, although in my 1998 S10 and not on my horse.

Our recent trip to Calder Dairy farms confirmed our desire to be out West (of Ann Arbor). A group of our close friends ventured out last Sunday to a little family farm that was chock full of goats, cows, ducks and more. I took plenty of photos, all majestic, but what captured my eye was the ability for the adults to intermingle as the kids just played together and ran all about the farm. Freedom!

Needless to say, I have been out driving the country roads 3 times in the last 5 days. Two of the trips included stopping by to visit some dear friends who just started a Barn Wedding business and it is blowing up, so it's not like I am driving the S-10 aimlessly back and forth down random country roads... although that sounds fun. I have been pretty wordy (thanks, Dex!), but to bring the dream down to earth a little, I hope to acquire 50-100 acres where I can build 10 to 25 homes depending on what the township allows.


I have a passion for design that takes into account place, efficiency and environmentalism. Although I'll be the first to admit building a new home (or 25) can be seen as not environmentally friendly, I think as caretakers of creation we can bring restoration to the land and rejuvenate it after decades of industrial farming. I also would like to take to practice green design principles that push the envelope with the help of modern day technology: solar, wind-turbines, geo-thermal heating while including proven building principles that have been abandoned (e.g. timber framing, masonry heating, etc.). In the end, I want to build something that will last.


So if you either want to buy our house or live in the country with us, let me know. ;)

This post was written while dominating Velcade and Doxil, and was written moderately under the influence of Dex, but it didn't slow my domination as you can see below!

Video Blog: Week 1 in Review

Chemo Dorks: Day 1

More to come on this post after we make it through Day 1 of chemo (noon kickoff). Phil will not be resisting drugs today, so hopefully the DARE police don't follow our blog.

Welcome, Midland Daily News readers.

What a great way to start our two week hiatus to Emerald Isle, NC prior to starting chemo treatment... with a magnificent win in the Big House by the Big Blue! I must admit that I was a little upset that while traveling through both Ohio and West Virginia there were little to no air waves carrying the Michigan game, but I guess that is to be expected.

Today my hometown news posted my story in the Sunday paper roughly 7 years after the article on the Washington kick. I have always appreciated the journalist who covered the story and this interview was delightful as I got to hear more of his life story, all of which was very encouraging to me.

As I hang low for the next two weeks, I am glad to see the news go public. For those who know me, fame and recognition are the last two things I seek out or even desire. I think what I do desire is for people to know that there is pain and suffering going on in this world and we need to continue to ask why and what can I do? I think seeking the perfect cocktail of chemo drugs to cure this disease in me is a wonderful thing, but why does a young man in his 20's stumble across such a disease as Multiple Myeloma?

So believe me, after we are done kicking this disease straight through the uprights there will be much celebration, but for me, the game will not be over, it will just have begun.

Addendum by Cassie: Phil has done a great job of taking over this blog for the last couple of weeks since I've been trying to get everything lined up for our vacation and for treatment. I just want to also welcome readers of the Midland Daily News and encourage you to leave a comment if you are coming here for the first time. Even if you're not sure what to say, a simple Hello goes a long way... we gain so much encouragement just knowing you're out there.

MM Bringing Spartans, Wolverines and even Buckeyes together...

Today I was blessed with the opportunity to connect with JM up at MSU. JM's husband, SM, was diagnosed with MM at the age of 25! They have an amazing story which has provided me with so much strength and encouragement ever since I learned of them through someone on my medical team. JM has been awesome at reaching out to me to get the live updates on how both Cassie and I are doing. So today we met in person for the first time and it was so great. As I was driving back to Ann Arbor I started to think how MM has brought so many people into my life that I hardly know, but that I am so thankful for.

Oddly enough, in my email inbox when I got home there was a message from a friend who had another buddy who was recently diagnosed with MM. This fellow lives down in Columbus, OH of all places and I can honestly say that I know what he is going through right now given that my diagnosis is still fresh in my mind. We may be in different life stages, but the whole uncertainty aspect knows no age, gender, or college football affiliation!

I think one thing cancer patients and their families do best is help absorb each other's worries and provide hope that is very hard and probably awkward for those who haven't been touched by cancer to offer up. So the web of relationships caused by my MM diagnosis continues to expand, and for this I am saddened, but also thankful. Thankful, because I know that with each diagnosis there will be more pain and anxiety, but with that there will be a greater measure of hope to be expressed and shared by all.

We will kick this thing...together.

-CancerKicker #34

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.

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.

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.