In response to my previous post, a myeloma list friend (thank you!) privately sent me the blog posts written by Virginia MacLean (1963-2007), who was diagnosed with myeloma in 2003 but postponed treatment in order to have a child. Like my list friend, I found Virginia’s story very compelling. Her blog can still be viewed here: http://tinyurl.com/2q3upe This is her first post, which contains many of my own sentiments (clarity, attitude change, e.g.):
Virginia’s Own Words
by Virginia. Sunday, March 5, 2006
Three years ago today. That’s the day it all changed. I didn’t admit it then. I guess that’s a self-preservation sort of thing. You want to believe it will be better for you than the odds say it will be. And at first you don’t feel any different than you did a day earlier so you really don’t believe the diagnosis in some sense. But three years later there is no denying it. You have this disease and it isn’t going away. And like it or not, it is going to progress in you just the way it does in everyone it invades.
But you have to pull your thoughts together and remember that it ALL changed three years ago … and not all of it was bad.
I was diagnosed with cancer 8 weeks before my 40th birthday. Everyone was asking me how I was handling turning 40. I told them I had been given an early birthday gift – the gift of clearly seeing the value of all the days I had left to live. Cancer causes an immediate attitude change. If you have the strength to look forward with optimism in the face of a cancer diagnosis, you are given the gift of clarity. Never had my purpose in life and the goals I had set for myself been clearer.
The average age at diagnosis for someone with myeloma is 70. So when I told my doctors I decided to postpone treatment in order to have a child, they did not know how to react. None of them had experience with this situation and there was precious little in the formal literature to guide them. Some were quietly sullen. Others more open with their disdain. “We can’t tell you what will happen. A pregnancy could stimulate the growth of these cancer cells.”
But a few were supportive of a patient willing to look forward to life in the face of such a significant challenge. There was the issue of me being single and without a significant other … but that is another story. Being on my own only made the decision more my own. And so, 22 months later, when doctors had predicted I would likely need the next level of treatment, I instead gave birth to a happy, healthy baby girl. No stimulated growth in these cancer cells. Being pregnant actually reduced my IgG to near normal levels. So Paige did her part in helping keep me alive. And she does it again every time I walk in the door and she gleefully screeches and reaches out to greet me. And now it is my turn to return the favour. My turn to work on being there for one more day, one more milestone. But more importantly, it is my job to show her how to find joy in the milestones we have together however many or few they are. Maybe she is really the one who will teach me that. Either way, we are in this together and for that I am eternally grateful.
The marketer in me knows that everything in life comes down to nothing more than a point-of-view. So here is my point of view on cancer: Cancer can cause my death, but it can only take my life if I let it. I don’t plan to do that.
The following are excerpts from her explanation of myeloma. Because of length issues, I cut out the stats, but you can go read them on her blog.
What is myeloma anyway?
by Virginia. Thursday, March 9, 2006
Let’s take a step back here for a minute to answer the burning question: What the heck is myeloma anyway? I had no idea three years ago. And even now, the more I learn the less I understand … which is probably why the issue of curing this disease has eluded researchers all this time. But as a starting point, here is my rudimentary explanation of what it all means to the best of my understanding.
Myeloma is a cancer of the bone marrow. The evidence of myeloma can be seen in the blood, but the issue is in the marrow – in the place where that blood is born so to speak. Here is how things are supposed to work vs. how they actually work with myeloma.
Our bodies have an ingenious system for helping us fight infection. Plasma cells in our blood produce antibodies (which chemically are proteins) that attach to the infection. This signals other cells that the infection is bad and needs to be removed from the body. Brilliant. The problem with myeloma is that malignant cells develop which appear to be plasma cells but they are not rejected by the body. So literally these malignant plasma cells crowd out normal red and white blood cell production. This in turn results in bone destruction because it interferes with another nifty trick our bodies can perform.
New blood pathways can be created as needed. So for example, if you get a black eye and a capillary is crushed — no problem. Your body just creates a new capillary nearby and re-routes the blood. And you eye heals good as new. But with myeloma the need for new pathways keeps increasing. Each new blood pathway literally blows a microscopic hole in your bone and over time that leads to significant and painful destruction of the bone.
And that’s really it. One little mutation in one cell in your bone marrow for some unknown reason and BOOM …. everything is off kilter permanently.
In general, I like having some idea of the timeframe even though I know a number of things could adjust the actual dates up or down for me personally. Knowing the likely outcome gives me something to beat. And it also gives me the clarity to focus on what is important now and just forget about fighting and beating all the time. Because all that fighting and beating is tiring and in the end just enjoying the life you have is really more important.
But it is always there in the back of your mind. That annoying little tick, tock.