I am in my third week of maintenance (injections every other day now) and each time I have injected, the side effects have been so miserable they actually wake me up and prevent me from sleeping. The headache and all over body aches are worse now than they were on induction. They last longer and seem worse in intensity to me.
Today I gave in and called my Supportive Care nurse who communicated what's going on to the doctor. He wrote a script for pain meds.
When I called I felt embarrassed, like I was making trouble for them. I was worried that they would not believe me or think I am a whiner. I know this is irrational, but that's what it is like for me. But my nurse reminded me that the best thing for me is to complete this treatment and I very likely would not do that if I had to put up with chronic pain and sleeplessness for another 45 weeks. Managing the pain quickly (and any other troubling side effects) is what she is there for. So even though I was reluctant to do so, I'm glad I called.
Sent on the TELUS Mobility network with BlackBerry
Thursday, December 23, 2010
Tuesday, December 14, 2010
LTD
I suppose I have been in denial. My return to work date has been pushed back three times now. I originally hoped to be back to work by the end of November but here we are in mid- December and I'm still not working.
I'm still just too sick. I was hoping that the maintenance phase would be easier to tolerate - and it is a bit better - but I'm still no where well enough to work every day, even half time.
So today I bit the bullet and sent in my insurance paperwork to file for long-term disability. There is a 17 week waiting period, but I can collect unemployment sickness benefits while I wait for the LTD to kick in. Then I called my boss and gave him the news. I'm very disappointed, but this is just my reality right now.
Sent on the TELUS Mobility network with BlackBerry
Sunday, December 12, 2010
The Mear Bear
and I got up early this morning. He slept 7 hours through the night so he ate a big bottle when he got up.
He is all smiles this morning - when I got him out of his bassinet, he looked up at me and then got the happiest smile on his face, as if to say "I know you!".
He's been sitting in his bouncy chair having a little chat with Winnie the Pooh. He tries to reach for Pooh but of course he's not yet coordinated enough to get his hands to do what he wants. It certainly isn't from lack of trying though! He gets his arms going and soon his legs are pumping up and down as if he could propel his entire body over to get Pooh. His patience and persistence amaze me.
Sometimes when I am holding him I have to remind myself that this is my son's son. Because it almost feels as if he were my own. I feel a caring, protective mother's love for him - and yet when I see my daughter in law holding him I feel a pride that she is such a natural mother to him. Its hard to explain. If you have grandchildren I suspect you'll understand what I mean.
Oh! Now he's blowing bubbles! Isn't it funny how we take such pride in babies doing the most ordinary of baby things? He's yawned a few times and is slowing down his gymnastics so I expect he will soon be having a morning nap.
My grandson is with me and life is good.
Sent on the TELUS Mobility network with BlackBerry
He is all smiles this morning - when I got him out of his bassinet, he looked up at me and then got the happiest smile on his face, as if to say "I know you!".
He's been sitting in his bouncy chair having a little chat with Winnie the Pooh. He tries to reach for Pooh but of course he's not yet coordinated enough to get his hands to do what he wants. It certainly isn't from lack of trying though! He gets his arms going and soon his legs are pumping up and down as if he could propel his entire body over to get Pooh. His patience and persistence amaze me.
Sometimes when I am holding him I have to remind myself that this is my son's son. Because it almost feels as if he were my own. I feel a caring, protective mother's love for him - and yet when I see my daughter in law holding him I feel a pride that she is such a natural mother to him. Its hard to explain. If you have grandchildren I suspect you'll understand what I mean.
Oh! Now he's blowing bubbles! Isn't it funny how we take such pride in babies doing the most ordinary of baby things? He's yawned a few times and is slowing down his gymnastics so I expect he will soon be having a morning nap.
My grandson is with me and life is good.
Sent on the TELUS Mobility network with BlackBerry
Tuesday, December 7, 2010
Phase two
Friday was a big day. I finished up my induction phase of treatment - that is the every-day-at-the-hospital-by-IV portion of the treatment. When that was done they removed my PICC line. AND I got word from the surgeon that the second lesion was not abnormal! I would have celebrated except I felt especially crappy that night. Figures.
When I finished up the last treatment and the PICC came out, I had to sit for a bit to make sure I didn't faint or have a reaction, and as I was sitting there I was overcome with...I don't know exactly - it was a mixture of relief and sadness and fear. I started to cry and the nurse came over. She told me it is really common for patients to be ambivalent about finishing. On the one hand, we're glad to have the hard part over and be able to return to some semblance of a normal life. On the other hand, we've become accustomed to being in a safe, supportive environment day after day and when treatment ends we lose that. She reminded me that I can call the chemo suite any time if I'm having trouble; they have a supportive care team to provide follow up care.
I didn't think I would miss the PICC line, but yesterday when I had to have blood work and I got stuck three times because my vein kept collapsing I sure wished for the good old days when they drew the blood out of the PICC. Other than that, I am very glad to have that thing out of me!
My mom was with me when I got the path results from the surgeon. She was very quiet when she heard the news and then she simply said, "That's very good news". This has been very hard on my folks. My dad has been driving me back and forth to treatment each day and I can see the worry in his face. I wish I could spare him the pain of this ordeal; he wishes he could do more for me. I understand that, so I let him drive me each day so he can feel like he is doing something. It means a lot to me.
Yesterday I learned how to administer my own chemo by subcutaneous injection. At first I didn't think I would be able to do that, but it is actually not that bad. I will have to give myself injections on Monday, Wednesday and Friday for the next 11 months. However, since I administer them myself at home, I can figure out what works best for my schedule and administer accordingly. After my first injection yesterday, the side effects seems milder than the induction regimen and I thought "piece of cake". Then around midnight I woke up with aches and chills and fever that lasted about two hours. At this point its hard to say if that will be a regular thing, but if it is I suppose I can adjust my injection schedule so I don't get hit in the middle of the night.
My doctor would like me to wait until the new year before I attempt going back to work. Actually he would prefer I do not work while receiving treatment, but he said he would leave it up to me - if I felt up to it then he would ok it. The nurses have been discouraging it too. They see unexpected adverse reactions all the time and I guess they just want to be cautious. One thing is for sure - I am tired very easily these days with just the littlest effort. That will probably be the determining factor - do I have the energy to return to work? I guess I'll just have to wait and see. At this point I'm just focusing on getting through Christmas!
I took a picture of the PICC line before they removed it. Yeah, I know, I'm morbid :)
When I finished up the last treatment and the PICC came out, I had to sit for a bit to make sure I didn't faint or have a reaction, and as I was sitting there I was overcome with...I don't know exactly - it was a mixture of relief and sadness and fear. I started to cry and the nurse came over. She told me it is really common for patients to be ambivalent about finishing. On the one hand, we're glad to have the hard part over and be able to return to some semblance of a normal life. On the other hand, we've become accustomed to being in a safe, supportive environment day after day and when treatment ends we lose that. She reminded me that I can call the chemo suite any time if I'm having trouble; they have a supportive care team to provide follow up care.
I didn't think I would miss the PICC line, but yesterday when I had to have blood work and I got stuck three times because my vein kept collapsing I sure wished for the good old days when they drew the blood out of the PICC. Other than that, I am very glad to have that thing out of me!
My mom was with me when I got the path results from the surgeon. She was very quiet when she heard the news and then she simply said, "That's very good news". This has been very hard on my folks. My dad has been driving me back and forth to treatment each day and I can see the worry in his face. I wish I could spare him the pain of this ordeal; he wishes he could do more for me. I understand that, so I let him drive me each day so he can feel like he is doing something. It means a lot to me.
Yesterday I learned how to administer my own chemo by subcutaneous injection. At first I didn't think I would be able to do that, but it is actually not that bad. I will have to give myself injections on Monday, Wednesday and Friday for the next 11 months. However, since I administer them myself at home, I can figure out what works best for my schedule and administer accordingly. After my first injection yesterday, the side effects seems milder than the induction regimen and I thought "piece of cake". Then around midnight I woke up with aches and chills and fever that lasted about two hours. At this point its hard to say if that will be a regular thing, but if it is I suppose I can adjust my injection schedule so I don't get hit in the middle of the night.
My doctor would like me to wait until the new year before I attempt going back to work. Actually he would prefer I do not work while receiving treatment, but he said he would leave it up to me - if I felt up to it then he would ok it. The nurses have been discouraging it too. They see unexpected adverse reactions all the time and I guess they just want to be cautious. One thing is for sure - I am tired very easily these days with just the littlest effort. That will probably be the determining factor - do I have the energy to return to work? I guess I'll just have to wait and see. At this point I'm just focusing on getting through Christmas!
I took a picture of the PICC line before they removed it. Yeah, I know, I'm morbid :)
Subscribe to:
Posts (Atom)