As you know, we are packing up our home here in China in order to relocate to California. We've lived here for seven years (a time of completion) and it's time to go back.
One thing that having cancer has done for me is to free up my time. I am literally "stuck" here in the apartment during my dropping blood cell count phases, so I am able to sort through things, etc. I'm going through drawers, boxes and I am tossing/giving away most of what is in those drawers and boxes.
I literally gave a sigh of regret when I came across this Avon "pink ribbon." It's the only pink ribbon pin I've ever purchased in my entire life and I believe I got it in the early 90s, after my mom died of breast cancer metastases. By the way, that's an important thing to note . . . no one dies of breast cancer in the breast. They die when it spreads to distant organs (most commonly, bones, liver, lungs, bones) and causes physical malfunction and shutdown.
Finding this pin in the back of a drawer has given me "pink ribbon blues." Isn't it beautiful? It's a bit spotted with age, but the execution of the design and colors is quite nice. However, I'm not sure why I ever thought that such a thing was an accurate representation of my mom. She liked "flashier" jewelry (to some degree) and she was most definitely not defined by her illness.
When people see a "pink ribbon," they tend to have two images in their minds. The first is that of vibrant women, all dressed in brilliant pink, wearing wide smiles, flashing triumphant in-your-face attitudes. They tend to see these women as victors in a large-scale battle for their life in which that pink ribbon will be their all victorious shield. There's the sight of corporate sponsors, large rallies, rocking music, pulsating emotion, etc., and almost everyone is HAPPY! People actually pay money (that supposedly goes into breast cancer research, but is more often to line corporate pockets) to be a part of the pink brigade!
The second image isn't as fun. It's the other side of reality . . . the fact that breast cancer kills approximately 40,000 people in the United States each year. My mother was one of those women back in 1989.
It's the in-between stages that get lost in the shuffle. Perhaps I'm even a perpetrator of the myth "might conquers all" (that's not true) and perhaps I'm the poster child for "If I'm cheerful enough and confident enough, I can beat this thing!" No, I can't. I'm not going to hide from you. This is the hardest thing I've ever done. I feel like I'm daily waging war against all kinds of things. There's the war to just get out of bed . . . provided I've been able to sleep long enough to even be in the bed. It's the war to bite my tongue when I hear one-more-time that I was "lucky that they found the cancer so early." (Uh, no. Stage IIIb is considered to be late stage cancer, not early detection.) It's a battle to be gracious when someone else tells me that I make cancer look "easy." It's hard to hear someone tell me that she won't call me or come to see me because she can't bear to watch me go through cancer. (I don't really care if that person calls or visits, but it's the words that hurt. It's not *her* battle and yet, it has become *her* drama.) It's a battle to hear breast cancer being dismissed as a disease that everyone recovers from these days. And, in spite of the humor and ignorance behind the statement, it was even hard to hear a beloved elderly woman tell me that I just couldn't have cancer (that my doctors were wrong) because I just plain looked too good to have cancer. There's also the weekly email (or two, or three, or more) telling me that I should use some alternative treatment plan that just borders on the insane!
At the beginning of all this, there was concern over how difficult the commute to Hong Kong would be for the chemotherapy treatments. It's almost the opposite . . . the commute itself has almost been the easiest part. While I get chemotherapy there, it's also a place where everything is different and I'm at the "top-of-my-game" prior to getting the next chemo session. I enjoy my times in Hong Kong.
What people don't tell you . . . and what few people talk about . . . is just how ugly everything else can be in between. Yes, we hear about the nausea and vomiting, but I never knew that a different chemo drug causes such excruciating pain that it drove me to tears. I didn't know about all the support drugs that go into this treatment plan. I take six or seven supplements and vitamins to help build my immune system. I take chemotherapy to shrink the tumor. I take a white blood cell booster shot to aid my body in recovering from the devastating blows of the chemo. I take steroids to counteract allergic reactions to the chemo. I take pain killers to fight off the tear-inducing waves of agony that wrack my body to the point of not being able to sleep. I take stomach acid inhibitors to protect my stomach from the pain killers. I feel like I'm chasing one drug after another without any sign of relief from anything. I have non-stop hot flashes and I need to sit in front of a fan all the time. I have oral thrush that makes everything taste bad so eating is a chore. Even water is beginning to be nasty. I am so tired now that I can't see straight, although, it seems I'm turning a corner. I'm getting an hour's sleep in every once in a while and I'm no longer crying in pain.
My veins hurt from the chemo. I get swollen hair follicles on my scalp that hurt so that when I am able to lay down, the pillow irritates the follicle. Same goes for swollen hair follicles on my legs. I can't wear my wedding ring because my hands swell too easily. And as for celebrating marriage with my beloved husband? Few people mention the fact that my libido is below sea level.
I panic over the smallest abnormality. I shower twice a day with anti-bacterial soap. I brush my teeth a half-dozen times a day. I lay on my side in a fetal position because laying on my back is too painful. I have to run to the bathroom in the middle of the night because I'm no longer eating on a regular schedule and my system doesn't know what to do.
It's a vicious cycle and I'm tired of it. The pink ribbon doesn't tell you any of this. It cheats people into some sort of illusion. It doesn't tell you how much it hurts.
My God is victorious and the victory is in His healing. I do believe I will be healed. That doesn't mean that the healing is easy, though. While this is, indeed, a battle against cancer, I think it's more a journey. I don't usually say that I'm battling, but right now, I'm so weary, I'm not going to mince words. It's a fight. To the finish. And it hurts a lot.
I struggle with this one. I can't tell you the number of times I've both heard and read the statement, "Well, if you have a breast lump that hurts, then you can be assured that it's not cancer. Breast cancer doesn't hurt." Even moments before I got my initial diagnosis, someone told me, "I'm sure the doctor is going to give you good news because breast cancer doesn't hurt."
Let me just say this, "Ah, . . . yes, breast cancer can and does hurt!"
The intellectual side of me knows that only up to 15% of all cancer diagnoses are from patients presenting with pain. However, when you are one of those 15%, it's rather discouraging to keep hearing and reading that "breast cancer doesn't hurt."
Back in October, when I felt the new lump and felt the pain, I remember telling Art, "I'm not too worried about this, but I have to get it checked out. It really hurts!" By the time December came, the pain was shooting up and down my arm and would literally cause me to gasp aloud as I was writing on a chalkboard.
Later, I asked the breast specialist what was causing the pain. He said that since the tumor was so close to the skin, it was pressing on nerve endings in the skin. Sure enough, as the chemotherapy causes the tumor to shrink, I find that the pain is much, much less in intensity. Halfway through chemo, I find myself having very little tumor pain.
I do encourage my friends to learn their bodies. Women, do self-breast exams every time you shower. At first, you won't know what you are feeling and it may feel downright strange! (Breast tissue can be lumpy and bumpy.) However, by becoming familiar with your body with daily exams, you'll be able to note when something different happens. Learn to trust your instincts . . . if something is different for a couple of cycles, then get it checked out. If you experience pain, then get it checked out. Making an appointment doesn't mean you are going to have a negative diagnosis, but it does mean you are taking charge of your own health.
Later, I'll write more about pain. It's real and it hurts.
_I believe we all have a story. This blog records my story and how I've lived with breast cancer both as a primary disease and a terminal disease. I believe this is all a part of God's story for my life. This blog unapologetically includes all areas of my life: my faith, my family and my advocacy for change in the metastatic breast cancer world.