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.

*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.

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.

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.

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.

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.

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

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.

i know *I* wouldn't want your blood...

Phil and I were talking to our friend the other night. Friend had just given blood and Phil lightheartedly mused, "I wonder if I can still give blood?" Friend quickly surmises, "Ummmmmm... I don't think so. No."

It doesn't sound so funny as I'm typing, but trust me, it was hilarious. The 3 of us laughed until our faces hurt, and in that moment much power was taken away from MM.

I see more laughter in our future.

multiple myeloma conference

Phil went to a MM conference today (thanks, Barb). He said it was enlightening and brought a sense of reality to our situation. He asked one of the doctors from Karmanos about the age of his patients... the doctor said his youngest MM patient is in his mid-30s, the second youngest is 47 and the rest are in their 50s and up. So, as we pretty much already knew, we really are the rare birds in the myeloma landscape.

Phil was also able to get some good information and stats on stem cell transplants which we will continue to mull over. Even though we're not at that point yet the likelihood is that we will have to make these decisions in the near-ish future and we want to be as prepared as possible when that time comes.

I've been following several blogs written by people who have MM and I decided to add those links to this page. However, I'm not sure about blog etiquette so if you are the writer of one of these blogs and you would prefer not to have a link on my page please email me and I'll take it down.

a non-update...

Just wanted to post a non-update.

We will not have any new information until Phil's next appointment. That's when they do more blood work and other fun tests to see what his numbers are doing. Even at that point we won't have as much information as we will at the February appointment since levels can vary quite a bit even day to day. 

It sounds sick but we're actually looking forward to these doctor visits. We feel like we're getting a grip on the reality of the situation, even though we were saying last night that when we talk about it, it's as though we're sitting outside of ourselves- like it's happening to someone else.

I think this is the craziest and most frustrating thing about "smoldering" multiple myeloma... they can't do anything about it until it becomes problematic. We liken it to driving around with your "check engine soon" light on but being unable to fix whatever's wrong. At any rate, that's what's happening (or not happening) around here on the MM front.

On another note, we're going to the beach with my parents and sister next week for ten days of oceanfront R&R. Looking forward to the respite. Not looking forward to the drive with the Littles... but it will be worth it to have some time away from home to plan and process, but mostly to just BE.

because you know us...

Just want to throw it out there that we're totally cool with people asking questions about all of this. I know that no one quite knows what to say... and that's fine. We have no expectations that anyone will have just the right thing to say in this situation.

A few of our dearest friends have said, "I know that this isn't happening to me, but..." And to that I say nonsense. It IS happening to you because you know us. And we want you all to be free to ask questions and process this information too. If I can help with that please let me know.

we don't know what the crap we're doing...

So I first need to give the standard disclaimer since the title of this blog might imply that it exists to educate the masses on this disease. In fact, quite the opposite is true... we don't know what the crap we're doing. We are the dummies, my friends. If you are along for the ride because you just happen to know us, or know someone who knows us, I apologize for the uncertainty and tentativeness with which I am about to proceed. But despite our lack of knowledge on the subject I will do my best to pass along the information we're gleaning as we travel this path, and also keep this blog updated so that you will all be able to follow our journey.

Here's the story...

My husband, Phil, was hospitalized in July of 2006 after a pulmonary embolism. He was on and off of blood thinners and in the following two years he was hospitalized twice more for DVT (more blood clots in his legs). I finally threatened him with bodily harm if he didn't get to a specialist to find out what was going on.

After seeing a hematologist and undergoing numerous tests from June-August 2008 we received his diagnosis the day after his 28th birthday: Multiple Myeloma (stage 1, or "smoldering" myeloma). Multiple Myeloma is a cancer of the plasma cells and as of right now there is no cure.

Now for the better news. We are learning that there are some potential new treatments on the horizon and our doctor is a self-described "glass-half-full kinda guy". (Which is exactly what you want in an oncologist, right?) Also, Phil's numbers are such that right now treatment is not necessary. So we're able to process all of this without having to go right into a stem cell transplant or drug therapy.

So as for the current course of action, Phil will go in every three months for blood work and once a year he will get a full skeletal x-ray. His current numbers are the baseline for further test results and the doc will be watching him like a hawk for any increases.

Phil's next appointment is November 4th so I'll update again after we talk to the doctor. Thanks everyone for your prayers, kind words of support and blessings of food and help. We are so, so grateful.