I accidentally overdid my upper body physical therapy last week. My left arm is currently a cooked noodle; I can't raise it up. I have DOMS (delayed onset muscle soreness), in my left rotator cuff apparently. Fortunately I use my cane with my right hand, so it's only been a minor inconvenience. And just a bit painful. Sister Holly massaged it for me, and that helped a lot.
In the house now I primarily use a cane rather than a walker. For walks around the neighborhood I still prefer to use the walker for now because there are lots of sticks and other tripping hazards.
I'm down to 1 mg of dexamethasone per day. Feeling fine, eating fine. On Sunday I will start zero mgs of dex.
What other story lines do I have for updates? I turn 39 years old tomorrow! I feel so lucky to have made it to 39. When I was diagnosed with inflammatory breast cancer in October 2010, the 5- year survival rate was only 50%. I'm old! My goal has always been to make it at least to 40; I'm close! Lloyd is trying to keep me from 40, but just maybe I'll make it after all.
Wednesday, October 23, 2019
Friday, October 11, 2019
Great strides
Sorry it's been so long. I've been elecronically challenged--not wanting to deal with electronics. That's my poor excuse for any concern I may have caused you in my blog absence.
And there have been a few shenanigans, including ANOTHER ambulance ride to Iowa City (with the same paramedics, who remembered me although I didn't remember them). So what was this ambulance ride about? Well, I can't tell you precisely what dose of steroids I was on after the ventricle shunt surgery, but it was quite a bit. Maybe 8 mg per day or something in that ball park? My spouse was managing my dose for me because I was in no condition to manage my own meds.
As per doctor's orders, we stepped down the dose on a schedule. Well, as soon as we tried to step down the steroid dose, I stopped being able to keep food down. I was puking on my plate during dinner! It was terrible, and horrifying for the children. So, we called Dr. Oncologist. She said to go to the ER and get checked out. So we did. And many images were taken (they have a specific phrase for this bundle of images, called a shunt-o-gram) to make sure that my shunt wasn't awry...my local ER wondered if my shunt was working too well, so hence the ambulance ride to Iowa City, where the shunt experts are. (Although steroid withdrawl seemed to me the simplest explanation for the puking.) The shunt experts concluded that my shunt was in perfect order and steroid withdrawl must be the cause of my nausea. Huzzah for no problems with the shunt. So--they upped my steroid dose for no medical reason other than Comfort, which counts for something in my book. Now I'm on 3 mgs per day until Sunday, when I'll try to go down to 2 mgs per day. And we're going to do an early morning blood draw to check on my body's ability to make cortisol after I wean completely off the roids. Data! :)
Other than these shenanigans, I'm doing quite awesomely. Slowly getting my balance back with a bit of leg strength, I still have a physical therapist and an occupational therapist coming to my house twice each per week. I made granola with my OT this week. We have a low counter in our kitchen, so I can sit in a desk chair and do stuff at the low counter without anyone worrying about me falling over. I still don't do any chopping, though, because I'm on a blood thinner and so really can't get cut right now. I'm on the blood thinner for a blood clot in my leg that was discovered when I was hospitalized for shunt surgery. My leg had swollen up like a club! So someone did an ultrasound of my leg while I was under I guess. I have a clot in a femoral blood vessel = blood thinners.
Another thing I can do is cook using my Instapot! I don't feel safe running the stove yet (because balance checks! I still need two hands on the walker.) But I can cook in my instapot. Yesterday I made minestrone (recipe here) and it was wonderful. I have a bladeless chopping device to ensure no injuries to myself.
I feel as though my biggest challenge as yet is getting back on top of my cognitive game. Everyone says I'm getting better, so I'm moving in the right direction. But I still struggle when there's more than one thing going on, and it exhausts me. So I continue to be patient with the mysteries of brain healing. I finished an afghan and am starting another one this week. I've read several books. I play cards with the girls when they're home from school. But my favorite part of the day is definitely my lunch buddy--someone has continued to organize lunch buddies for me even though I don't acutely need a lunch buddy. That is, I can get my own lunch. But I appreciate and love the company! And my lunch buddy will often take me outside for a walk, which is a marvelous bonus for me!
And there have been a few shenanigans, including ANOTHER ambulance ride to Iowa City (with the same paramedics, who remembered me although I didn't remember them). So what was this ambulance ride about? Well, I can't tell you precisely what dose of steroids I was on after the ventricle shunt surgery, but it was quite a bit. Maybe 8 mg per day or something in that ball park? My spouse was managing my dose for me because I was in no condition to manage my own meds.
As per doctor's orders, we stepped down the dose on a schedule. Well, as soon as we tried to step down the steroid dose, I stopped being able to keep food down. I was puking on my plate during dinner! It was terrible, and horrifying for the children. So, we called Dr. Oncologist. She said to go to the ER and get checked out. So we did. And many images were taken (they have a specific phrase for this bundle of images, called a shunt-o-gram) to make sure that my shunt wasn't awry...my local ER wondered if my shunt was working too well, so hence the ambulance ride to Iowa City, where the shunt experts are. (Although steroid withdrawl seemed to me the simplest explanation for the puking.) The shunt experts concluded that my shunt was in perfect order and steroid withdrawl must be the cause of my nausea. Huzzah for no problems with the shunt. So--they upped my steroid dose for no medical reason other than Comfort, which counts for something in my book. Now I'm on 3 mgs per day until Sunday, when I'll try to go down to 2 mgs per day. And we're going to do an early morning blood draw to check on my body's ability to make cortisol after I wean completely off the roids. Data! :)
Other than these shenanigans, I'm doing quite awesomely. Slowly getting my balance back with a bit of leg strength, I still have a physical therapist and an occupational therapist coming to my house twice each per week. I made granola with my OT this week. We have a low counter in our kitchen, so I can sit in a desk chair and do stuff at the low counter without anyone worrying about me falling over. I still don't do any chopping, though, because I'm on a blood thinner and so really can't get cut right now. I'm on the blood thinner for a blood clot in my leg that was discovered when I was hospitalized for shunt surgery. My leg had swollen up like a club! So someone did an ultrasound of my leg while I was under I guess. I have a clot in a femoral blood vessel = blood thinners.
Another thing I can do is cook using my Instapot! I don't feel safe running the stove yet (because balance checks! I still need two hands on the walker.) But I can cook in my instapot. Yesterday I made minestrone (recipe here) and it was wonderful. I have a bladeless chopping device to ensure no injuries to myself.
I feel as though my biggest challenge as yet is getting back on top of my cognitive game. Everyone says I'm getting better, so I'm moving in the right direction. But I still struggle when there's more than one thing going on, and it exhausts me. So I continue to be patient with the mysteries of brain healing. I finished an afghan and am starting another one this week. I've read several books. I play cards with the girls when they're home from school. But my favorite part of the day is definitely my lunch buddy--someone has continued to organize lunch buddies for me even though I don't acutely need a lunch buddy. That is, I can get my own lunch. But I appreciate and love the company! And my lunch buddy will often take me outside for a walk, which is a marvelous bonus for me!
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