Wednesday, January 28, 2009

Showin' some myeloma bloggy love

I was perusing my usual myeloma sites the other day and I came across a newish blog by a cool cat named Nick. He's another youngin' and he and Phil have connected via email. We think we like him. He quite possibly knows more about multiple myeloma than multiple myeloma knows about multiple myeloma. That's the kind of guy you want on your team. (Though you wish MM hadn't picked him.)

If you have questions remaining about MM, read his blog and you'll be straight.

To Nick, Mrs. Nick and kids... ROCK.

Saturday, January 17, 2009

A lamp unto our feet...

:: Oct 2004 we did not know we were going to find out Cassie was pregnant.
:: November 2004 we did not know Cassie would lose her job because of that pregnancy.
:: December 2004 we did not know Cassie was going to miscarry.
:: July 2006 we did not know Phil was going to get a pulmonary embolism (blood clot in the lung) and be hospitalized for 2 weeks before anyone figured out what was wrong.
:: Oct 2006 we did not know our nephew was going to pass away at 2 years old.
:: Dec 2006 we did not know we were going to be moving back to Ann Arbor.
:: Aug 2008 we did not know Phil was going to be diagnosed with cancer.
:: September 2008 we did not know Cassie's mom was also going to be diagnosed with cancer.

I (Phil) feel as if through the valley of the shadow of death, we are being guided by something greater than ourselves to a place beyond our wildest imagination.

Keeping the hope, living by faith...and screwing up royally. :)

Saturday, January 10, 2009

this blog post is not sponsored by a drug company.

Phil and I went to a Thing the other night at which we heard a myeloma doctor speak about the different treatment options. The event was sponsored by a drug company and there was free food. I told Phil to eat a lot... eventually we'll be paying $250,000 a year for those drugs and I wanted to get my money's worth out of that pasta salad right then, dang it.

At this Thing I realized how pleased I am with the care we've received thus far. Granted, we've not had to do much other than show up for visits and Phil gets poked with needles every couple of weeks, but I appreciate the way that Dr. J sees us- BOTH of us- as people with lives and ambitions and hope. He is kind and down-to-earth, yet very knowledgeable. And his PA, Tara, is fabulousness in a lab coat. I am grateful for our team and getting this very small taste of what (and who) else is out there made me feel even more confident with our decision to stay at U of M.

Being at this Thing also confirmed that our experience so far has been unique. Good unique. It hurt me to hear some of the struggles that other cancer patients have with their doctors and insurance companies and I pray that we will be spared that frustration and despair.

We're still taking things a day at a time, and appreciating the connections we're making in the wide world of cancer. It turns out everyone has a story of how they've been personally affected by cancer... who knew?

And totally off topic, but worth mentioning, did anyone see Barbara Walters' interview with Patrick Swayze last week? Watch it. He has some great things to say.

Friday, January 2, 2009

2009

Friends,

Rejoice I say, rejoice. I feel a little like Paul in writing this letter to y'all; so it's probably no coincidence that before my mother decided on a name for me she narrowed it down to two: Philip and Paul. I'll be the first to admit I am about 1% the man Paul was...which is probably why I ended up with the name Philip :)

When I reflect on 2008 I get two responses. One is dark and gloomy and much a response to what I hear on NPR and other news sources and it involves failing companies that have been around longer than my 86 year old grandfather, a financial industry that was driven by greed which led to its collapse and then bailout, politicians promising to bring change and in my own backyard a flailing auto industry whose top executives each fly to Washington on their own private corporate jets begging for money to survive.

Although 2008, for me personally, provided the most unexpected news of my life I can look back on it and say honestly that I have not seen in any other year more blessings in the lives of those I call family and friends, who have remained steady and true in acknowledging that Jesus is the source of life and the source of their existence. Yes, there has been a lot of noise with the economy, but here's a quick list of the blessings from 2008 of my valued friends:

- The Gritters have a successful transition to Philly as Sarah lands her top residency placement and Tom sees continued growth at McKinley even with the housing market collapse and was granted the opportunity to work remote full time.

- The Balazers see the arrival of their second darling girl Annabelle as they finish up their three year stint in Chicago before Andrew kicks off his legal career with an awesome opportunity in Detroit

- The McCollums (great friends from Charlotte) make a decision to give up the American dream for a year in Malawi, Africa to spend time caring for children who live in the third poorest country (start 7/2009). Amidst this commitment to go to Africa, Daniel was promoted to Consulting Manager even with the company's owner knowing that he will only be around for six more months. Jamie also landed a wonderful teaching position this year and was able to complete her degree!

-The Bajenarus entered into full-time ministry work with their church and are anticipating the arrival of their second child.

- The Brabbs Seniors (my parents) spend a year in India which allowed them to pay down all their debt. Just prior to the shootings in Mumbai my parents were told by their employer that due to budget cuts they would not be returning to India.

- The O'neills: Double up their efforts at growing their family with twins that are due in 2009.

- The Bromleys: After a challenging 2007, both Don and Julie see promotions at their jobs and just recently experienced the arrival of their second daughter, Brynne.

- The Botts: Sam continues to dominate his "smart people" exams and they too experience the arrival of their second daughter, Ingrid.

- The Lynns move back to Ann Arbor after Kevin is able to land a job just miles from their new home which now includes 3 after the very recent birth of Monica!

- The Jominys see their twin boys who arrived early live a healthy first year as Brandon finishes up his two year stint at the Harvard Business School.

- Mark Spencer (the only single dude) is blessed with the opportunity to travel on two missions trips (New Zealand & Guatamala) while he completes his first full year in the Corporate cubicle, where he takes no time to rise to the top and also is given the opportunity in the training department. I won't make mention of the girl....although I guess I just did. ;)

- The Brabbses finish construction on their home, Iris sees her first year and Ocean (and Cassie for that matter) survives his Terrific 2's. Also, just last week Phil was offered a new position that provides new opportunities at his current employer, while finding the time to move his side software project along.

On the news each day we are repeatedly reminded how bad things are at home and in the world. This message is an interjection and objection to that message. 2008 was very challenging and difficult for many, and I can relate to that message. BUT, I think as we count our blessings and review the work of our Father in our lives this past year, our joy will not be stolen.

I am not trying to dismiss the cancer in our world, nor the cancer in my body. But it would be wrong to dismiss all the good that God poured out on us this year, all the good He continues to pour out on us and all the good that He promises to always pour out on us.

Thanks for keeping me engaged with your lives this past year. I think about all of you regularly and I am always thankful to be able to share in the joy and hope God passes through you!

2009 should be a year of parties, because there is so much to celebrate from 2008. May you have the strength and awareness to continue to acknowledge the Father in everything you do and everything you become in 2009.

Much love,

Phil

Thursday, December 11, 2008

cool.

Just had this article emailed to me. Dr. J is our doctor. And I personally would also like to add that he has a superb bedside manner and quite possibly the dopest accent I've ever heard.

Multiple Myeloma Research Consortium (MMRC) Honors Dr. Andrzej Jakubowiak, University of Michigan with 2008 Center of the Year Award

The Multiple Myeloma Research Consortium (MMRC) today announced that it has awarded the University of Michigan Cancer Center and Andrzej Jakubowiak, MD, PhD, the 2008 MMRC Center of the Year Award. The MMRC Center of the Year Award recognizes the outstanding efforts of an MMRC Member Institution and its respective principal investigator in advancing the field of multiple myeloma research and drug development.

In awarding the 2008 MMRC Center of the Year Award, the MMRC evaluated its Member Institutions using a cutting-edge "scorecard" whose metrics include the number of clinical trials launched, the speed at which clinical trials were opened, and the number of patients enrolled in the clinical trials within the Consortium. MMRC Member Institutions were also evaluated for their contribution of new ideas and institutional engagement in the MMRC.

Under the leadership of Dr. Jakubowiak, Associate Professor of Medicine and Director of the Multiple Myeloma Program at the University of Michigan, the Michigan site has opened numerous clinical trials to date and has consistently met or exceeded patient enrollment forecasts. Dr. Jakubowiak was also recognized for his exemplary stewardship of pharmaceutical and biotech industry partners " most notably his role in facilitating the first MMRC study testing four FDA-approved drugs in combination to treat untreated multiple myeloma patients " and his focused leadership in advancing novel pre-clinical and clinical research ideas.

"We are incredibly proud to be part of the MMRC, a consortium that is committed to advancing high-quality, innovative clinical trials of today"s most promising compounds and novel combinations," said Dr. Jakubowiak. "I have no doubt that their commitment to results, as evidenced by the Center of the Year Award, will lead to the development of the next generation of treatments for multiple myeloma."

The MMRC Center of the Year Award bestows a one-year grant to fund a full-time on-site Multiple Myeloma Project Coordinator to support the clinical trials conducted within the MMRC network.

"The MMRC Center of the Year Award recognizes the University of Michigan and, in particular, Dr. Jakubowiak"s exemplary commitment and leadership within the Consortium. They are a model for other MMRC Member Institutions and a true partner in our efforts to bring patients new effective treatment options," said MMRC Founder and CEO Kathy Giusti.

Wednesday, December 3, 2008

*correction

Phil pointed out that I used the word "stable" in the post below when I probably should have used the term "unchanged." He's right... "stable" gives the impression that the myeloma is under control when really we have no idea what it's doing. With only a few points on a graph it's impossible to know for sure. But since it appears that things are still trending upward since his diagnosis, we are really just waiting to see how his test results will play out in February.

So to correct my earlier post, we aren't out of the woods yet. But we are still relieved that we have a few more months to not have to think about it, which is good news in our books.

Tuesday, December 2, 2008

holding pattern


I was asked what a pee-pod is. Karen coined the phrase; I stole it because it sounds a lot cuter than "24-hour urine sample". Here is a picture of the beauty for the next round of tests, being guarded by Ocean's "buddy-fly". (It's empty, of course. I'm not that crass.)

Before I get to today's update, I think it will be helpful if I give a little Multiple Myeloma lesson. Or, as one of Phil's former coaches is infamous for saying, "Let me tell you what I know based on what I know."

One of the key markers of Multiple Myeloma is something called an M-Spike, or M-Protein. The "M" stands for monoclonal. The Monoclonal protein is an antibody that is being overproduced due to a mutation in the gene that produces these antibodies, or immunoglobulins. A normal level is obviously zero. At diagnosis, Phil's M-Spike was 2.2. Last month, it went up to 2.9. Labs were repeated a week later and it fell to 2.7. Today it remained steady at 2.7.

Medical opinions vary on when it is appropriate to begin treatment for many reasons. In Phil's case, he's so young that they don't want to pull out the big guns too early since this could potentially make him resistant to those treatments later on. They were ready to move forward when the M-Spike was creeping up towards 3, but since things have come back down our medical team feels now is not the time to begin treatment since the numbers indicate that the myeloma is currently stable*. Our doctor is comfortable waiting until the end of February to repeat the labs and see what happens then. Since the holidays are upon us and we are trying to sell our house and I'm attempting to go back to school in order to obtain a functional degree and we're failing miserably at potty-training our almost-three-year-old, we're definitely relieved that treatment can wait.

We are feeling all of your prayers. There are no words to express the depth of our appreciation for your friendship and support, and for everyone's continual 'checking in' on us both. This would be an unbearable burden if not for each of you. Love, love, love to all of you. More updates and funny stories to come. But now, I sleep.

Sunday, November 30, 2008

Let's try this again.

24-hour pee-pod today.
Blood work and pee-pod drop off tomorrow.
Appointment with Dr. J on Tuesday morning.
Update to follow.

Thursday, November 6, 2008

Update to the update

Phil just talked to our P.A. and she said his M-Spike (which is a significant indicator of the progression of MM, and the number they are most concerned with in Phil's case) went down from 2.9 to 2.6. However, it is still up from his initial labs when it was at 2.2 so the plan is to give it another month and repeat the labs to see what the overall trend is.

Phil did meet a man with MM the other day who says his numbers have been all over the chart since diagnosis and he hasn't needed treatment yet so maybe Phil's MM is doing the same. We'll know more in a month.

This waiting is so annoying. I just want to send someone in with cancer grenades and myeloma laser guns and blast those suckers outta there.

Wednesday, November 5, 2008

November Appointment Update

We wanted to update you all on Phil's recent lab results.

According to the labs taken last week, it appears that the multiple myeloma is active and progressing which is not what anyone, our doctor included, expected to see. They are repeating the labs to make sure it wasn't a fluke and we should have those numbers tomorrow (Thursday). Assuming nothing changes we will begin talking about treatment options.

Here is where we will need lots of prayer for wisdom to make the best decision. There is no standard protocol for treatment, and because Phil is much younger than 99.7 percent of all other multiple myeloma patients we are hesitant to go forward with a clinical trial, yet one is being presented which sounds like it might be promising. Regardless, the fact remains that we will probably need to make a decision in the next few weeks and we don't even know where to begin so we just need some divine wisdom and peace around the best option.

We appreciate your thoughts and prayers and will keep you updated as we learn more.

Sunday, November 2, 2008

Words of Wisdom

Posted by Phil:

I received an email from a friend and I believe her words were full of so much truth. In commenting on my condition she said: "...believing that in all things God is in control, and he allows us to go through some very painful things because ultimately it is us, our hearts , our devotion he wants to have."

Most people that know me understand that I lean heavily on faith in decisions I make around the way I chose to live. A couple of years ago when I was hit with a pulmonary embolism (blood clot in the lung) I thought I was being attacked by death. Through some time working through my thoughts in prayer I sensed God telling me that it was him on the other side of the blood clot. He wanted my devotion, my attention and simply put...my life. (Thanks for the reminder Kelly)

I felt for the first time being in the palm of God was the safest place to be, but also maybe one of the most dangerous given that he could squish me like Ocean does little ants. After the PE I received two additional blood clots in the course of 18 months. God seemed to validate to me that he has a stake in my life and I must continue to give it back to him.

I'll end with a verse that must be stuck on auto-play in my head...probably for good reason:
Jeremiah 29:11 - "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Don't forget to vote on Tuesday. Tuesday will also be our first doctor's appointment since the diagnosis on 8/8. We will be reviewing the recent lab results. Here's a short prayer for Tuesday: "Lord, give Dr. J the wisdom to decipher the best course of action for Phil's case. More importantly, help restore Phil's Michigan Wolverines!"

Love y'all...thanks for staying tuned. -Phil

Sunday, October 26, 2008

here comes the fun...

Phil's testing begins today for our visit on the 4th.

24-hour pee pod began this morning.

Blood work tomorrow.

We're on our way. To where, I'm not quite sure.