I’ve been thinking a lot about the book ” My Many Colored Days” by Dr. Seuss. It’s been an apt descriptor of what life has felt like recently.
“Some days are yellow, some are blue. On Different days I’m different too. You’d be surprised how many ways I change on different colored days.”
My last scan showed some cancer growth, with new lesions on my spine and one of my left rib. The pain in my spine has been tolerable and well controlled with pain meds and by managing what I do physically. I have been surprised by how much I’ve felt my rib pain. Last month after my scan results my doctor and I discussed what to do next. Both of us felt that given the new lesions it was unlikely the Ibrance was working anymore. However, since my next treatment option was IV chemo I wanted to wait another month to see what would happen next. Moving to the next drug would have a significant impact on my quality of life. Unfortunately, during this last month the pain in my ribs has increased quite a bit. I’ve learned that I really do have to stay on top of my pain meds and not try to martyr through it.
“Some days, of course feel sort of brown. Then I feel slow and low, low down.”
I like to think I’m pretty tough, but this has taught me that sometimes I’m just not. Pain is exhausting. It makes me crabby and lowers my patience. Steve is much happier when I stay on top of the pain meds, and so am I. I’ve learned that the importance of sleep continues to be underrated in this country and it’s tough to sleep when you can’t roll over without groaning and letting out an expletive; tough for both of us. I met with my doctor again last week and was truly surprised at how much the pain had increased. This of course bought me another set of bone and CT scans to make sure nothing else has grown. Bone and CT scans aren’t the best way to look at lobular breast cancer, but it was too soon for insurance to pay for another PET scan. Based on these most recent scans it looks like my rib met has increased a little bit and so has one spot on my spine. Nothing really huge, but enough to know that the treatment I’m on is no longer working.
“On purple days I’m sad. I groan. I drag my tail. I walk alone.”
Monday I went into Abbott and had a port placed. I’ve been lucky and unlucky that I haven’t had this yet in 9 years of treatment. A port is a device placed under your skin. It is connected directly to your vein and makes it easier to have labs, chemo and contrasts for scans and other tests. I have pretty terrible veins and sometimes it’s an event in itself to get an IV in me. This will make things much easier, but on the not really important, but still kind of stinks side of things; it means I have another scar and another “thing” in my body that just shouldn’t be there. Next Thursday I’ll start IV chemo. There are no other oral chemo pills for me to take at this time. Cancer will now get to run a little bit more of my life. I’ll head down to the oncology office one day a week for three weeks and then have one week off. Treatment should be fairly quick, about 2-2.5 hours. I asked my doctor how long I’ll have to do this. Here’s what he said ” Until this works like a charm and kicks back the active metastatic lesions, ( MY first choice), or until the cancer grows and we know it’s not working and have to switch to something else, (another IV chemo) or until we figure out you are not tolerating it well and we have to switch.” In other words, welcome to the new reality. It also means I’ll be “outed” as a cancer patient. I’m going to lose my hair again. As annoying as it can be sometimes to feel really crappy and still have people say how great you look, I have enjoyed being able to be incognito as a cancer patient. I can still wear a wig, but it won’t be the same as having hair no matter how great the wig is. So, how do I feel? I’ve felt just like Dr. Seuss describes. I’ve had all kinds of emotions. Anger, fear, sadness, loneliness and then round about back to acceptance.
“Green days. Deep deep in the sea. Cool and quiet fish. That’s me.”
People say they admire my bravery, courage and strength. I want everyone to know that I don’t always feel that way. Sometimes I’m not brave and I don’t have a lot of strength. I cry, I get scared and I lose faith. This cancer is not a gift. It can teach me things, but I have to choose how and what I’m willing to learn. I have to make a choice some days to get up off the floor and to act like I have faith even when I’m not feeling it. There are nights I go to bed and will wake up with a panic attack; scared and wondering how I’m going to make it through this. How much will it hurt? How long will it go on? How much can I really handle before I fall apart? It’s then I have to remember to grab on to the tiniest of things to be grateful for and hold on for dear life. I whisper to God that I’m losing it and need help. I don’t always feel calm right away, but I keep remembering that I need to quit thrashing and start floating. So I take long, slow deep breaths. I keep telling myself it’s going to be ok until at least my heart and my body start believing the words and i can go back to sleep. And basically, that’s how I manage cancer. One day at a time, one moment at a time. I practice gratitude, because I know there is always someone out there going through something harder than I am. I leap blindly with faith and hang on to the belief that somehow this will be manageable and I’ll make it through until the end. I cry and despair and then I get up and live another day. Some days with more grace then others.
“Then comes a Mixed-Up Day. And WHAM! I don’t know who or what I am. But it all turns out all right you see. And I go back to being…me.”