Cancer is a really shitty disease. It is a black hole that sucks you, your spouse, your kids, your parents and eventually all your friends and relatives into it. It insinuates itself into every aspect of your life. It is always in the back of your mind. Tick tock, tick tock. Some of the crazy thoughts that come to you are ones that you really can't share with your closest friends or family members. Unless they have been diagnosed with a serious illness like this, they really can't understand how you feel.
When I found out I had MGUS (a benign blood disorder that sometimes develops into a blood cancer like Multiple Myeloma, Lymphoma, or Leukemia), I was scared. My family doctor told me that there was no sense worrying about it until and if it turned into cancer. My parents said the same thing. Many of my friends voiced the same opinion. I got it. I knew that I should not worry until I really needed to worry...but what you know intellectually and what happens emotionally are two different things.
Have you ever had a call-back from a medical test? Have you ever found a lump in your breast, or had a crushing pain in your chest... and your body goes cold. Your heart is in your throat. You bowels turn to water. You get scared. What if someone told you not to worry until you know for sure it is cancer or a heart attack? Would that be helpful? Not likely.
For me it was a year of blood tests every 3 months. Watching my IGG (Immunoglobulin - Gamma) levels rise each time. Knowing that the steady and predicable rate of increase was likely going to result in a cancer diagnosis. Not being able to do anything, but wait and see. Not being able to discuss the growing fear and dread with anyone, (other than my husband, thank god for him, because it would upset them, or elicit a response about how I am worrying for no reason. Better still, to be told that by worrying or talking about it, I am willing it to happen. I kid you not. More than one person.
Turning to the internet for information and answers led me to a few articles and web-sites that spoke to the fears and concerns of people with MGUS. They linked to blog posts and forums where people like me could express their anxieties about watching their body turn against them while they were powerless to do anything about it. It gave me peace to know that others felt as I did and we could discuss it and talk each other off the ledge.
Once I had a diagnosis of Smouldering Myeloma, everyone rose to attention. Now it was real. SM means that your blood protein levels have risen to such a level that it is now classified as cancer, but you don't have any obvious signs of "damage" so it is still wait and see. In some cases, you could smoulder for years. My hematologist told us that he had 2 patients that were in smouldering stage for 20 years. This was little comfort as you looked around and saw that he had floor to ceiling piles of patient files on each wall of his office, a file room that we could not see, but assumed was full, and he was likely 70+ years old.
I did not have anemia, kidney damage or failure, hyercalcemia, or obvious bone damage or pain. I had chronic neck and back problems, and I did not notice anything different in the level of pain I was used to. So we were back to wait and see.
I couldn't do it. I was an emotional wreck. My kids were in BC and Alberta, my sisters in BC and my parents a 4 hour drive away. My husband was still recovering from his heart attack and cardiac arrest earlier that year. I needed to take action. Do something. Anything.
Over the next few months I had x-rays that indicated some small lesions in my skull and that prompted a reclassification of the disease to active Multiple Myeloma. An MRI indicated lesions throughout my spine. Some "holes" in the vertebrae as large as 1 cm across. The bone marrow biopsy indicated 15% cancerous marrow. Time to rally the troops! Time for ACTION!
In those months from MGUS to finally starting chemotherapy, (19 months), I needed support. I needed to have someone who understood what I was going through. I needed a safe place to share my thoughts and talk to, and listen to others. The various forums and blog posts that I found provided that. As did Wellspring Niagara (I have written about them previously). It became important to me to "give back" to this community and to others who did not know where to turn. Writing was good for my psyche, but if even one person benefited from one of my articles, then it was a win-win!
I have heard from many of you, over the last few years, that you have gotten something out of my blog. A laugh, or a cry. A moan or an eye-roll. But more importantly, I have touched people with cancer and in other cases, family members or friends trying to deal with cancer of a loved one. I have given some clarity to the emotional roller-coaster ride this is. I have given some education about Multiple Myeloma -- a cancer I had never heard of before I got it.
I keep writing for me. But I also keep writing for you and the future readers of this blog. If my writing can help someone that has cancer, or is supporting a loved one who is fighting, then I am happy. I have accomplished something good!
Thank you for reading. Thank you for supporting me in this fight. Thank you.
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