It is coming and I do not want to inundate my friends and family with ads, but I do want to post a gentle reminder that all proceeds from anything purchased in the Smiles Shops go to help find a cure for leiomyosarcoma. Also, if you enter Zazzle through my special link http://www.zazzle.com/cjmorgan* (that star * is the secret) you can purchase things from any other Zazzle shops (including Disney licensed shops or team logo shops) and the Smiles fund will still get a nice referral fee for that too. (You must have cookies enabled!)
It doesn't cost you any more to use my Zazzle link, so if you use it to buy items that you would buy anyway.... well.... everyone wins!!! ... and you will have my undying appreciation for your help with finding a cure for this horrible disease. Even if it doesn't come in time to save me.
Wednesday, September 30, 2009
Pain Pain Pain
Today is Wednesday, 3 more radiation treatments to go. This morning Scott's sister Becky came up to meet us at the hospital so it was especially nice. We haven't see her in a while. It almost made radiation a treat.
Last night was very difficult. I could not sleep and kept waking up in pain. My solution finally was to go downstairs and sleep in the chair, but I did not wake Scott up to come down and tuck me in. I did not want to bother him, so instead it was a comedy of errors. I got the blanket and pillows from the sofa and hobbled over to the chair with them. After dropping two pillows on the footstool, I sat down and pushed the third pillow behind my head and just sort of dropped the blanket on my lap. That is how I fell asleep. I awoke later crying in pain. My feet were freezing and I could not get them up over the pillows on the footstool so I pushed the pillows to the floor and tried to get the blanket over them. That is about where I was when I went back to sleep. I woke again crying and took some pain pills. The footstool was a little too far away from the chair so my feet were barely hanging from the edge. I decided that trying to get my chair/bed set up all by myself was not a good idea. I really need someone to tuck me in. How helpless can one person be? I went back upstairs and sat on the edge of the bed. That is when Scott woke up and put two big pillows under my knees so that I could get back to sleep.
Later, when he was ready to get up for the day, we went back downstairs and he got me all tucked into my chair. So, I did get a couple of hours of fairly decent sleep. Today I am thinking that getting a good nights sleep in a normal way is something that I might never have again. It was just about this same stage of the last round of radiation where pain control went out the window. What a miserable weekend that was. Pam is on vacation now, until October 7th, so I hope someone at the pain clinic will be able to help me figure out what to do so I do not have to repeat that again.
As I wonder what happens next I can't help but think that bad days might outnumber good days from here on. What happens when I cannot tolerate the pain at all anymore?
Last night was very difficult. I could not sleep and kept waking up in pain. My solution finally was to go downstairs and sleep in the chair, but I did not wake Scott up to come down and tuck me in. I did not want to bother him, so instead it was a comedy of errors. I got the blanket and pillows from the sofa and hobbled over to the chair with them. After dropping two pillows on the footstool, I sat down and pushed the third pillow behind my head and just sort of dropped the blanket on my lap. That is how I fell asleep. I awoke later crying in pain. My feet were freezing and I could not get them up over the pillows on the footstool so I pushed the pillows to the floor and tried to get the blanket over them. That is about where I was when I went back to sleep. I woke again crying and took some pain pills. The footstool was a little too far away from the chair so my feet were barely hanging from the edge. I decided that trying to get my chair/bed set up all by myself was not a good idea. I really need someone to tuck me in. How helpless can one person be? I went back upstairs and sat on the edge of the bed. That is when Scott woke up and put two big pillows under my knees so that I could get back to sleep.
Later, when he was ready to get up for the day, we went back downstairs and he got me all tucked into my chair. So, I did get a couple of hours of fairly decent sleep. Today I am thinking that getting a good nights sleep in a normal way is something that I might never have again. It was just about this same stage of the last round of radiation where pain control went out the window. What a miserable weekend that was. Pam is on vacation now, until October 7th, so I hope someone at the pain clinic will be able to help me figure out what to do so I do not have to repeat that again.
As I wonder what happens next I can't help but think that bad days might outnumber good days from here on. What happens when I cannot tolerate the pain at all anymore?
Friday, September 25, 2009
Friday
It's Friday, which means that my radiation is almost halfway done. Pam, my pain specialist, returned my call today and I finally got to talk to her after a week of telephone tag. The patches she gave me have not been working very well. At first there was a lot of problem with sticking and falling off, but this last time I decided to try a new spot, high on my chest, almost my shoulder. Well, it stuck finally, but I developed contact dermatitis. So, Pam immediately decided it isn't going to work and has me going right back to the old methods. So, we can't say we didn't try. Now, I need to find someone close enough that I can give the leftover patches to. I am not sure about mailing them, but I will if I can't find someone local that I can just give them to. Please contact me (regular e-mail is probably best) if you can use them. They are the generics from Mylan.
The radiation is going pretty well, I feel like there is a little sunburn, but it is not visible on my skin, So I think it is OK so far. The three hour hole it knocks out of each day isn't so great.
Have a great weekend, everyone!
The radiation is going pretty well, I feel like there is a little sunburn, but it is not visible on my skin, So I think it is OK so far. The three hour hole it knocks out of each day isn't so great.
Have a great weekend, everyone!
Wednesday, September 23, 2009
First Blog
Hey, I am a blogger now!
I have contemplated moving my journal to a site that would be easier to update. Then I decided it would just be easier to start a new blog and link it back to the journal, just in case I decided to keep that one up too. Well, one is probably enough. If that is the case it will probably just be this one.
So, the old journal is here http://e-cj.home.comcast.net/LMS-J.html
The other journal (more of a nutshell) is here http://e-cj.deviantart.com/journal/19975230/
My first update, which I know you all want yesterday, is here:
I had a follow up meeting with Dr Kelly, my radiation oncologist, a couple of weeks ago. She said she thought that a little more radiation could help me. She ran it by Dr Goff, my medical oncologist and primary case manager, who said yes, anyone who thought they could do something that might help me was welcome to give it a try. So we did simulation last week. This week we had picture day on Monday. Tuesday was my first radiation treatment and today was my second. This time there will be ten treatments, so they will go through October 5th.
Then the chemotherapy that was suspended to do this round of radiation will be resumed. Otherwise I would be having chemo Friday instead of radiation.
If none of this makes sense, you can gets a few of the blanks filled in by looking at the other two journals.
BTW, one reason I decided it would be nice to do a blog here is because you can also leaves comments here. Please do...
Smiles, CJ
I have contemplated moving my journal to a site that would be easier to update. Then I decided it would just be easier to start a new blog and link it back to the journal, just in case I decided to keep that one up too. Well, one is probably enough. If that is the case it will probably just be this one.
So, the old journal is here http://e-cj.home.comcast.net/LMS-J.html
The other journal (more of a nutshell) is here http://e-cj.deviantart.com/journal/19975230/
My first update, which I know you all want yesterday, is here:
I had a follow up meeting with Dr Kelly, my radiation oncologist, a couple of weeks ago. She said she thought that a little more radiation could help me. She ran it by Dr Goff, my medical oncologist and primary case manager, who said yes, anyone who thought they could do something that might help me was welcome to give it a try. So we did simulation last week. This week we had picture day on Monday. Tuesday was my first radiation treatment and today was my second. This time there will be ten treatments, so they will go through October 5th.
Then the chemotherapy that was suspended to do this round of radiation will be resumed. Otherwise I would be having chemo Friday instead of radiation.
If none of this makes sense, you can gets a few of the blanks filled in by looking at the other two journals.
BTW, one reason I decided it would be nice to do a blog here is because you can also leaves comments here. Please do...
Smiles, CJ
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