today was my first day on my new meds. the work they work is that i take a steroid in the morning an hour before i eat, and then the treatment med two hours after i eat. then i repeat the pattern after dinner. it is hard to remember to not eat within those hours and get myself back on that system again. but i will get used to it.
today was also my first day back at work. it felt good/odd to be back and in some ways like i had not been gone for 6 weeks and in other ways that so much time and so many things had happened. so it will be a learning curve as i get caught up.
i also drove for the first time in 6 weeks today and am happy to report i can do it again with no problems. ah, independence.
i also wanted to share beth's latest update since she had a post today so that you know how things are going and have included it below. keep sending her the love.
i also wanted to mention that the kelli happy mail campaign is underway and she is so, so thankful and overwhelmed by the generosity of complete strangers. thank you. thank you. thank you.
have a good wednesday peeps. we are halfway there. yes to that!
Tomorrow marks the start of my eighth cycle of chemo. Last time I only did 8 cycles so this should be my end. And yet it is not. I have a long way to go. It's still really hard for me to grasp it at times and do a mind shift. I like being able to count down and have a finish line. Right now my finish line is 2 years.
Some of my side effects are building. I definitely have fatigue. I get really wiped out in the evenings if I haven't taken a little cat nap. My hair loss continues and I have started to wear my hair cap again. It's weird to wear it again and I am getting used to it. But my hair is looking really bad without it.
The hand foot syndrome is what is causing me the most grief, more than neuropathy which has been manageable. My feet get all read and feel inflamed which isn't the most comfortable feeling. And unfortunately this side effect is from the chemo in the pump which is what will be on going. I talked to my oncologist last week and we may be reducing a dose here soon to see if it helps. I asked him if it was bad to reduce the dose and if it would effect my treatment and results. He didn't think so. He said it's common for people to reduce their dose and that is what they stay on. I never thought I would keep at this dose but thought maybe I would be able to keep it up longer.
Hopefully a reduced dose when it happens will help all around with how I feel, less fatigue, less hand foot syndrome. Once I drop the one drug my fatigue should get better according to my doctors.
I haven't been able to do many walks these days because our air quality is so awful and they are telling us to stay indoors. As I look out the window I see so much smoke. It does start to bother me with my lung issues. So I am looking forward to better weather and less fires.
My next set of scans have been scheduled. Sept 17 with results on the 18th. These will be critical scans, they should start to show if the immunotherapy is working. So I am really hoping for shrinkage this time!
In others news Lars and I flew back to MN a couple weekends ago for our first wedding shower thrown by family friends. It was a lot of fun and great to see so many people I haven't seen in ages. Their support both in our marriage and in my treatment means a lot to both me and Lars.
Lars and I got back our photos from our engagement photo shoot. They turned out really well so we enjoyed looking through them. August has definitely been a busy wedding planning month. We started tasting wedding cakes and booked a bunch more of our vendors. It's been fun and work and I am so thankful to have our wedding planner to help take some work off of me.
I have noticed some people at work treat me differently. They don't reach out to me, ask me to do things or invite me to some meetings trying to leave me alone while on treatment. I had a talk with one of my bosses last week asking for people to include me on things and let me decide what I can and can't take on, rather than them deciding for me. He is one of the ones not treating me differently which I appreciate. But it's a struggle. I get it. But I want to still contribute here and I have actually been really busy. On a good note I found out last week I won a big project I proposed on. And it's a good win and I was glad to still be doing good things for my company and for me. I want to still feel useful even though I know I cannot do it all and I don't try. I do know my boundaries.
Alli has had her highs and lows recently. Her new meds started making her really sick again so she had to go off of them. And I get the disappointment when you just want these meds to work and if you are sick you want them working that same magic on the tumors. She then just had scans and is showing some shrinkage of her tumors!! Which is such good news!! So they are starting her back on one of her last drugs at a lower dose and will keep an eye on her to avoid the fevers and fainting. My heart breaks when I know how bad she is feeling but she is a fighter and will go back in the ring as she puts it. So we are all pulling for continued good results.
I have been having fun recently with seeing friends and Lars and I went to a lot of sporting events over the weekend. And I dread tomorrow as I start to feel bad again for a good 5 days. I look forward to my bounce back times in between treatment.
Those are some of thoughts that have been rattling around in my head recently.
I thank you for your love, support and prayers.
Some of my side effects are building. I definitely have fatigue. I get really wiped out in the evenings if I haven't taken a little cat nap. My hair loss continues and I have started to wear my hair cap again. It's weird to wear it again and I am getting used to it. But my hair is looking really bad without it.
The hand foot syndrome is what is causing me the most grief, more than neuropathy which has been manageable. My feet get all read and feel inflamed which isn't the most comfortable feeling. And unfortunately this side effect is from the chemo in the pump which is what will be on going. I talked to my oncologist last week and we may be reducing a dose here soon to see if it helps. I asked him if it was bad to reduce the dose and if it would effect my treatment and results. He didn't think so. He said it's common for people to reduce their dose and that is what they stay on. I never thought I would keep at this dose but thought maybe I would be able to keep it up longer.
Hopefully a reduced dose when it happens will help all around with how I feel, less fatigue, less hand foot syndrome. Once I drop the one drug my fatigue should get better according to my doctors.
I haven't been able to do many walks these days because our air quality is so awful and they are telling us to stay indoors. As I look out the window I see so much smoke. It does start to bother me with my lung issues. So I am looking forward to better weather and less fires.
My next set of scans have been scheduled. Sept 17 with results on the 18th. These will be critical scans, they should start to show if the immunotherapy is working. So I am really hoping for shrinkage this time!
In others news Lars and I flew back to MN a couple weekends ago for our first wedding shower thrown by family friends. It was a lot of fun and great to see so many people I haven't seen in ages. Their support both in our marriage and in my treatment means a lot to both me and Lars.
Lars and I got back our photos from our engagement photo shoot. They turned out really well so we enjoyed looking through them. August has definitely been a busy wedding planning month. We started tasting wedding cakes and booked a bunch more of our vendors. It's been fun and work and I am so thankful to have our wedding planner to help take some work off of me.
I have noticed some people at work treat me differently. They don't reach out to me, ask me to do things or invite me to some meetings trying to leave me alone while on treatment. I had a talk with one of my bosses last week asking for people to include me on things and let me decide what I can and can't take on, rather than them deciding for me. He is one of the ones not treating me differently which I appreciate. But it's a struggle. I get it. But I want to still contribute here and I have actually been really busy. On a good note I found out last week I won a big project I proposed on. And it's a good win and I was glad to still be doing good things for my company and for me. I want to still feel useful even though I know I cannot do it all and I don't try. I do know my boundaries.
Alli has had her highs and lows recently. Her new meds started making her really sick again so she had to go off of them. And I get the disappointment when you just want these meds to work and if you are sick you want them working that same magic on the tumors. She then just had scans and is showing some shrinkage of her tumors!! Which is such good news!! So they are starting her back on one of her last drugs at a lower dose and will keep an eye on her to avoid the fevers and fainting. My heart breaks when I know how bad she is feeling but she is a fighter and will go back in the ring as she puts it. So we are all pulling for continued good results.
I have been having fun recently with seeing friends and Lars and I went to a lot of sporting events over the weekend. And I dread tomorrow as I start to feel bad again for a good 5 days. I look forward to my bounce back times in between treatment.
Those are some of thoughts that have been rattling around in my head recently.
I thank you for your love, support and prayers.
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