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.

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