After Phillip was born, I had sciatica. It sucked. The zinging shooting pain. I love to walk. Soon enough I couldn't. I iced, I stretched, I lotioned, I saw a chiropractor, tried ultrasound. The physical therapist told me that Phillip was a big boy and I probably would only find relief when he started walking. He was right. After I had Kiera- I took precautions and at the first stinging twinges, I would ice and stretch. By the time I had Lily, I had successfully avoided sciatica again, trading it for intermittent plantar fasciitis. Mostly weight related. As my weight crept up with the steroids and comfort eating, so did the cramps and nerve pain in my foot.
The new pain in my back felt like sciatica, but not quite the right spot. I hoped it was sciatica. I did what I thought would help. Day by day, it got worse. I remember the first time I made it half way around the block with Dobby and it was hurting so bad, but you know- sciatica- it wasn't going to kill me. I just needed to stretch. Ice. Sit for a minute. I sat upstairs ugly crying out of frustration. Pretty soon, I was a one woman sob show for Team Mallory. Phil wanted to call the on call nurse. Nah- It's ok. We'll talk about it the next appointment. Me, secretly hoping like most symptoms do- it would resolve by then. It did not.
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| Does this Lazy Boy make me look fat? |
My onc shook her head, it's probably not sciatica. Lets order a scan. So we scanned. It could be this, it could be that, it's probably mets. Here's the deal, I couldn't remember which hip was irradiated. Gasp, be appalled- think it's careless. I forgot to log the fricking brain surgery on one of my last scans. And that was a big deal- I assure you I did not forget having brain surgery. Phil said look for the tattoo the techs do it to mark where you had radiation.. Fuck, there are tattoos on both sides, I told them to do an elephant. I looked through my records. It's not that these details aren't important- I have just collected so many of them- for multiple people. And I'm a bit tired. The pain was prohibiting sleep and walking. The pain meds I got were no better than ibuprofen- so I started taking a lot of ibuprofen. Looking through my records meant a day of trying to organize a bin that I've been tossing all of our records into. The only relief came when Phil got me a little blue lazy boy.
Then it started getting worse again. I couldn't focus. I didn't want to leave the house. was maxing out hospital size doses of ibuprofen and barely making it to the next. Then there were hurricane warnings. I'll be the first to say- I handle emotional pain much better than physical pain. Probably why I was gifted with 3 girls. Emotional torture times 3. I also do not function well on lack of sleep. I was getting to breaking point. Getting up the stairs was getting tougher. I was just holding out for my next appointment- Phil kept a memo of "demands" on his phone and would plead with me to just call the nurse. I declined. Then one day I had to run an errand, I realized I hadn't been out of the house days and hadn't driven in even longer. As I went to lift my leg to get in the car, it was like lead. It banged against the side of the car. It took three tries. I sat in the car and cried. Piece by Piece. Bit by Bit. I was losing me.
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| Hurricane Bite Me |
After the storm passed and another was on its way-I hadn't slept more than an hour- I felt awful, Lily had an appointment the next day, I was gonna stop in oncology and see if I could up my med game. Instead I spent the night in my pretty blue chair and sobbed. I had taken to spending nights reading or watching tv. Phil was sleeping with earplugs and a mask and I wasn't the only one sporting circles under my eyes. I heard Phil getting ready for work, I don't ask him to stay home unless it's bad, I was going to ask him to stay. He took one look at me and asked if I wanted him to stay. Not need. want. Yes. He was supposed to fly and I still worry all these years and I didn't want to worry and I just wanted to sleep. So he tucked me in, and took care of the day. He even brought me home good meds. Good meds that took the edge off and I could sleep.
The next chemo and appointment, we went over everything. Phil usually goes because I put on a brave face. He's my big ol tattletale. I don't like taking heavy duty meds. They are addictive, they cause side effects, they can be very tough on your organs. My onc let me know that cancer pain is very different. The dose I was taking for pain was miniscule to what many patients take around the clock. I think part of it is feeling that being reliant on pain meds in another step in the progression and emotionally another blow. BUT living in pain is not a good quality of life- so there we were. I also wanted to go back to the PT place closer to us. They actually called the next day and got me in that week. And an appointment to meet with the radiation onc.
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| My favorite. |
I was sleeping better. PT offered definite relief and I started easing back my dose of ibuprofen. Today Phil was lucky enough to have the day off and we had another date at Tripler for my every 9 week ECHO(my heart is chugging right along) and a meeting with the radiation oncologist. As Phil looked for parking, the rad onc showed me the images. Confirming the radiation dose was in fact on the right side, the same side that's been getting worse and that throwing more radiation at it would probably not help. Which I had kinda already suspected. This is cancering. It's more of an art than a science on all ends. I had him print out some pictures so I could show Phil. I know he just wants to help fix it, I know me being in pain sucks for everyone. I know so many who live with chronic pain- and there are so many you would never know because they just get on with it. Others let you know every second of every day they are in pain. I am somewhere in the middle and do NOT want to be the latter. I tend to hole up when things get rough because why make anyone else suffer. Except my family- they are stuck with me.
Phil spent some time processing and I could tell he thinks I am hiding something from him. I wish I were. I think I just have more experience in this bullshit. And this bullshit is bullshit. Essentially mutants like me are sensitive to radiation. They have not cracked the code on the details- essentially p53 helps fix DNA damage, our p53 is broken, radiation causes DNA damage- we can't fix it. BUT there is radiation all around us- yes big blazing ball called the sun, rocks, and bananas. Not all of it is bad and after all we are built to deal with it. Obviously our bodies can fix some damage- otherwise every time we would step out in the sun, we'd become one giant tumor. So the intensity and location matters. I had a very low dose on my spine and hip. So logics like my BFF say- ok- a little didn't work, throw some more at it. At the bad points, I had about 8 Grays(gray is the measure of radiation absorbed in mass), most cancer therapy radiation is 46-60 Grays given in 1-2 Gray doses. An abdominal X-ray is about .0007Grays. Around 10 grays is when the dose starts to get lethal in one shot. You'd have to eat 10 million bananas to get a lethal dose of radiation and if you can eat 10 million bananas in any sort of time, you have bigger issues. The other thing is radiation likes to marinate. You know how you spend an afternoon in the sun, then later you feel your skin getting warmer and warmer...
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| Does this CT make me look fat? bahahahaha-radiation field. |
So we left with what I kinda knew. Radiation was a bust- may or may not have made things worse- it was worth a shot. My team kinda lets me call the shots. I call the shots based on quality of life. I was supposed to be on an anti hormonal medication called an aromatase inhibitor years ago. I tried it- it was not fun. Since my breast cancer expresses 3 different hormones- the idea is to take away the ones it feeds off of. We started with the chemical hysterectomy/oophorectomy. Then had to go surgical. So now this med will hopefully mop up extra bits and pieces. Side effects- aches, depression, night sweats, hot flashes, general menopausey kinda stuff- which I've had some experience with after the surgery. We are still on same game plan- keep the cancer as stunted as possible while having a decent quality of life. I've been very lucky. I've been on some sort of chemo for 5 years now and there are developments that are easier on the system. I've pulled back some more. I'm focusing on art therapy with the others. I'm hoping it will cool off soon and as Kiera says- stick a pumpkin up my butt and call me spooky. I've got meds for that now-so here's to happy haunting for awhile.