Friday, August 22, 2008

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.

Thursday, August 21, 2008

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.