Hurry up and wait
It's been a week since I saw my oncologist and we formulated the plan to once again bring me back to some sort of semblance of health, and nothing has really changed. That's the thing with cancer, it's a WHOLE bunch of hurry up and wait. We want to see you RIGHT AWAY!!! Also I can't get you an appointment for 3 weeks, but it is IMPERATIVE I see you right away! To me right away means today, not 21 days from now. Well in the medical world now, could also mean two weeks from now. So here I sit, pain increasing by the day, waiting.
Many people have asked why I'm getting the surgery on my hip, mostly asking if it's to remove a tumor. And no, it's definitely not to remove a tumor. If a tumor is on the bone then that is where it shall remain. I will be having surgery because the pain I have is being caused by a tumor yes, but it's really because the tumor is massively weakening the bone which means at any moment if I stand on it and it's decided it's had enough, crack goes my femur bone. Which is not exactly a comforting feeling. I knew I was in pain, and I knew some days that pain got so bad I would just sit there and cry. But as soon as they told me it was close to breaking I got VERY cautious. The last thing I need right now is to break my femur bone! I met with the surgeon yesterday and she explained that she will be taking what she calls a "nail," which is not a nail at all and is more of a large rod and will be sticking it inside my femur bone, after she cuts me open and drills a hole in the top of my bone. In case you're unaware the femur bone is the one that goes from your knee straight up your thigh and into your pelvis. Securing said 'rod' in place at the top and bottom will be two screws, so basically we could just head to Home Depot and pick up supplies for this surgery. As much as I do not want any more surgery, I honestly can't wait for this pain to stop. This has been over a month of just pain, it may not be intense every second but it's always there to some degree.
Living with chronic pain can make someone become a shell of who they once were. People who haven't experienced chronic pain don't always understand how very different it is from the pain we experience during a short term illness or injury. That sort of 'flash in the pan' pain is intense, and it's is there to alarm you and make sure you take care of yourself. It's there and it goes away and usually a whole lot of adrenaline is associated with it. Chronic pain doesn't behave that way. It's always there. Like an annoying drip coming from your sink, grading away at you over time until you're ready to snap if you hear one more drip. And at moments I truly believe I will never not feel that pain again. It can feel as if lightning bolts are shooting down my leg, making me long for the moments of just consistent underlying pain. When the pain is there so consistently you aren't even sure you're the same person anymore, and having to tell other people is exhausting. I am so sick and tired of telling people how I feel sick and tired I wanna throw up. I'm tired of making excuses for myself, I'm tired of explaining how the pain feels, I'm tired of explaining why I'm tired, or why I don't drink, or why I don't eat certain foods.....I think I'm just tired.
So for the next 9 days until surgery I'm just sort of stuck here with it. My pain is increasing slightly so the answer to that is hydrocodone, which in turn makes me sleepy. I am trying to find a way to not just disappear into all of this. A way to still feel part of the "world" while also taking care of myself. It doesn't always seem like I am able to do both. This portion of the disease has put such a damper on my physical activity that I have become unsure of what to do with very large portions of time. Time that is usually spent cleaning, teaching and practicing yoga, going for walks, grocery shopping, etc. is all open for me now. My poor mom is taking my dog for walks, doing my laundry and waiting on me hand and foot. *SIDE NOTE; having someone waiting on you hand and foot seems fun until you are unable to grab yourself a glass of water. Never underestimate how important self-sufficiency is.* And as much as this is a temporary problem, it's a temporary problem that is an offshoot of a much larger problem. And that much larger problem won't be solved after surgery in 9 days. But thankfully after I recover from surgery this one little area of my body won't be stealing the whole of my attention any longer.
After surgery I have to wait another 20 days before chemotherapy begins. If you know me you know patience isn't exactly in my wheel house. I am trying to be patient! I am trying to exercise said patience but I'm of the "let's just get on with it" mind set. I know what we are going to do, I know there will be pain, I know I will end up bald, I know this will not be fun so let's just do it already. I've been through chemo twice already. Maybe the third times the charm? Maybe? I know it's not a cure, my doctor knows it's not a cure, my hope is that it can keep me in remission for a while. My doctor's hope is that I stay alive until something comes down the pipe to put me in permanent remission and I have to say I share that same hope with him. He reminded me this week to keep fighting, he reminded me why we are doing this, he reminded me that there is a point to all of this. Now I must keep all those reasons in view, I must keep that hope alive, what other option do I have?
Painfully yours,
Jenny
XO
Many people have asked why I'm getting the surgery on my hip, mostly asking if it's to remove a tumor. And no, it's definitely not to remove a tumor. If a tumor is on the bone then that is where it shall remain. I will be having surgery because the pain I have is being caused by a tumor yes, but it's really because the tumor is massively weakening the bone which means at any moment if I stand on it and it's decided it's had enough, crack goes my femur bone. Which is not exactly a comforting feeling. I knew I was in pain, and I knew some days that pain got so bad I would just sit there and cry. But as soon as they told me it was close to breaking I got VERY cautious. The last thing I need right now is to break my femur bone! I met with the surgeon yesterday and she explained that she will be taking what she calls a "nail," which is not a nail at all and is more of a large rod and will be sticking it inside my femur bone, after she cuts me open and drills a hole in the top of my bone. In case you're unaware the femur bone is the one that goes from your knee straight up your thigh and into your pelvis. Securing said 'rod' in place at the top and bottom will be two screws, so basically we could just head to Home Depot and pick up supplies for this surgery. As much as I do not want any more surgery, I honestly can't wait for this pain to stop. This has been over a month of just pain, it may not be intense every second but it's always there to some degree.
Living with chronic pain can make someone become a shell of who they once were. People who haven't experienced chronic pain don't always understand how very different it is from the pain we experience during a short term illness or injury. That sort of 'flash in the pan' pain is intense, and it's is there to alarm you and make sure you take care of yourself. It's there and it goes away and usually a whole lot of adrenaline is associated with it. Chronic pain doesn't behave that way. It's always there. Like an annoying drip coming from your sink, grading away at you over time until you're ready to snap if you hear one more drip. And at moments I truly believe I will never not feel that pain again. It can feel as if lightning bolts are shooting down my leg, making me long for the moments of just consistent underlying pain. When the pain is there so consistently you aren't even sure you're the same person anymore, and having to tell other people is exhausting. I am so sick and tired of telling people how I feel sick and tired I wanna throw up. I'm tired of making excuses for myself, I'm tired of explaining how the pain feels, I'm tired of explaining why I'm tired, or why I don't drink, or why I don't eat certain foods.....I think I'm just tired.
So for the next 9 days until surgery I'm just sort of stuck here with it. My pain is increasing slightly so the answer to that is hydrocodone, which in turn makes me sleepy. I am trying to find a way to not just disappear into all of this. A way to still feel part of the "world" while also taking care of myself. It doesn't always seem like I am able to do both. This portion of the disease has put such a damper on my physical activity that I have become unsure of what to do with very large portions of time. Time that is usually spent cleaning, teaching and practicing yoga, going for walks, grocery shopping, etc. is all open for me now. My poor mom is taking my dog for walks, doing my laundry and waiting on me hand and foot. *SIDE NOTE; having someone waiting on you hand and foot seems fun until you are unable to grab yourself a glass of water. Never underestimate how important self-sufficiency is.* And as much as this is a temporary problem, it's a temporary problem that is an offshoot of a much larger problem. And that much larger problem won't be solved after surgery in 9 days. But thankfully after I recover from surgery this one little area of my body won't be stealing the whole of my attention any longer.
After surgery I have to wait another 20 days before chemotherapy begins. If you know me you know patience isn't exactly in my wheel house. I am trying to be patient! I am trying to exercise said patience but I'm of the "let's just get on with it" mind set. I know what we are going to do, I know there will be pain, I know I will end up bald, I know this will not be fun so let's just do it already. I've been through chemo twice already. Maybe the third times the charm? Maybe? I know it's not a cure, my doctor knows it's not a cure, my hope is that it can keep me in remission for a while. My doctor's hope is that I stay alive until something comes down the pipe to put me in permanent remission and I have to say I share that same hope with him. He reminded me this week to keep fighting, he reminded me why we are doing this, he reminded me that there is a point to all of this. Now I must keep all those reasons in view, I must keep that hope alive, what other option do I have?
Painfully yours,
Jenny
XO
I'm so sorry to hear about what you've been going through, Jenny. I wish you didn't have to have an experience like this. I hope the surgery will provide some strength for your femur and hip and alleviate the pain. I'll be happy to give you a free hypnosis session after your surgery, if you're interested. I've moved away but I can meet by Skype or FaceTime. Or if you don't have those, phone can work, too.Take care, and I'll be thinking of you and holding an image of you as healthy, recovered, happy as can be, and back to making music and doing what you love.
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