One thing about this whole cancer adventure is that I can’t really know what to expect on any given day.
It’s a huge mystery, and it seems that there are as ways a cancer journey can unfold as there are folks who’ve had cancer.
I had THOUGHT that once we got my pain settled with the 3x Oxycontin + as needed OxyCodone, I would be good to go. And that worked for a few weeks.
But apparently because the tumor in my spine had metastasized again into my hips and tailbone, and it brings a whole NEW tenderness and sensitivity. I wouldn’t have chalked it down as actual “pain” until today, when the sensation definitely grew into a pain situation.
My morning adventure was getting X-rays at St. Joseph’s hospital, then seeing my neurologist to discuss the X-rays, and then a drive over to St. John’s Cancer Center for a refill of my chemo pump medications and home for resting.
Unfortunately, St. Joseph’s is one of those old-type hospitals in a downtown area that is actually a series of buildings that have been cobbled together into one unit. This means that there are very few DIRECT ways to get from one department to the next, so my walk from the entrance to Radiology, and then another walk to the Neurology dept were BOTH extremely long (involving several elevator rides and lots of walking)
And this caused me extreme pain. It wasn’t the walk as much as it was the big brace I had to wear, which pushes down on my hips in a MOST uncomfortable way, and causes me to sweat like a Swede in a sauna.
Seriously, you could have WRUNG OUT the T-shirt I was wearing under the brace,
and heat causes my skin to bleed (I’m a redheaded weirdo)
and THAT causes a great deal of pain.
It was so bad that I got a special dispensation to only wear the brace for comfort reasons. I’ve been pretty good about wearing it whenever I travel in a car, or when I’m walking around outside, but with the advent of the hip pain I must admit I’ve been leaving it off as much as I’ve been wearing it.
I feel very fortunate that my neurologist is taking the fact that the brace is CAUSING me pain seriously.
But it’s been hard to climb out of the hole of pain in my hips that I slunk into this morning. I know that after I’m able to get a decent night’s sleep the pain will begin to resolve itself, but right now it’s a cold, hollow pain that fills both hips, it’s probably time for a lidocaine patch, to be honest.
Pain is such a game changer. It feels good to discuss it, but I also know how boring it must be to open my blog and read, “Pain, blah, blah, blah, PAIN!” But that’s my reality today. Which is so weird after a few weeks of very decent pain control.
It also makes me wonder if the chemo pump drugs I’m on are having
some kind of effect on my pain meds, perhaps undercutting them in some way..?
Tomorrow I meet again with my Radiational Oncologist to discuss returning for MORE radiation treatments to deal with this pain, and to deal with the metastasis of the spine tumor. This whole thing sounds so danged scary, but each and every nurse and doc and health professional I deal with has been NOTHING but hopeful that all of this is just part of my own, personal cancer journey.
I appreciate their hope, it gives me a lift, and makes my days a bit easier. My nights, however, continue to be honeycombed with pools of pain and fear.
On a personal/work level, I am feeling terrible that I’ve not been able to swim above this pain to get more done on the website. It’s like I can’t 100% focus on anything but — well — pain. That’s what pain is, I guess, a big, fat element of life that steals all the focus from everything else.
And, by comparison, the pain I’m feeling is actually much LESS than the pain I was feeling for most of the Spring/Early Summer. It’s just that now that it’s attached to the word “Cancer” it’s as if the pain has a deeper color, a scarier hue, and it can be alarming.
13 thoughts on “The Pain Drain”
I’m holding you in my heart. Pain is mean and vindictive at times, and it sounds like this is one of those times. I hope they figure out a better pain med regimen and fast.
Message me any time if you want to complain about your pain. You know I get it, and I am more than ready to listen.
My heart goes out to you! I’m going to recommend that you start following a ketogenic diet immediately as another tool in fighting your cancer.
The cancer needs fuel to survive and spread and it has been shown in studies that it gets this fuel from sugar. If you switch to a diet that is high in fat and low in carbohydrates, you will starve that awful cancer and assist your other treatments. Read up on it.
I wish you an absolute triumph over this horrible cancer!!!
Holding you in a bubble of softest cool. Just a question, though: why in heavens name were you walking all that distance? Yes, I know you can, however, it’s a hospital…there are these devices called wheelchairs, made for such situations. True, given when the Uglies have settled, riding isn’t much better than walking. However, the wheelchair is quicker, at least as long as someone else is pushing. Please conserve your energy!
Hoping today is better for you.
Annie, I’m so sorry that you are in pain. Been there; done that..my prayers are with you. I wish you a healthy outcome. Keep your chin up. If your doctors are giving you hope…that’s good news.
Annie, First of all I love this photo you chose at the top of this blog. Even in your worst of times you are hilarious and creative. I was sitting watching some fabric and a pattern that lay on my dining room table for the last week and trying to get up the gumption to just sew the darn thing. I saw your blog about the Uniform. I cannot believe the strength you have to keep on creating and dealing with this horrendous disease. I cut out the jacket and I’m going to sew it! thanks to you.
Please check into see if you can get a patient advocate to help you with your office visits and anything else you need. I will, of course, keep you in my prayers and you go thru this journey that I’m sure you will bring you back to health.
Hugs (very delicate e-hugs, so as not to add any hurt).
And yes, what Kris said, why use limited? energy & time schlepping through hospital halls?? There are wheelchairs, there are gurneys, if either of those would help, and sometimes there are secret back passages staff can take you through.
All best, and many thx for writing: You are speaking for many who can’t/won’t or in any case don’t.
(Re: your previous post. Really, I Wool Survive?? I wool never be able to get that out of my mind….)
Anne, I hesitate to suggest this, but a friend of mine has had good luck with using medical marijuana for pain. Have you considered it? You might have already talked about it with your doctors, and I don’t know about how you feel about it or the legal issues where you are. Just an idea. You are showing such courage in this fight, I wish you all the best.
Don’t hesitate to mention it! I’ve actually been writing about it, and I’ve been approved for Med MJ here in MN. Just waiting for my pharmacy meeting.
I want you to know that I appreciate your efforts to put into words the thoughts and feelings and sensations you are having, good and bad; describing stuff that doesn’t have a very robust vocabulary or grammar.
Between the pain and the pain medications you need to quiet it some, it’s very understandable that you can’t concentrate or “get more done.” Don’t operate heavy machinery and all that. I’m sure that it’s frustrating though.
I’m so sorry to hear of your pain and suffering! I admire your strength and the way you face it! And I already have admired your talent and hard work for us in the knitters world! Thank you for all you do!
The next time you need to visit the hospital for meds or anything else, go to a reception area and tell them you are a cancer patient and need a wheelchair and volunteer to take you to your destination… save your strength for other challenges.
Excellent strategy! I will!