Nilly's updates on the big battle to Cancer
- Thread starter vanillasugar
- Start date
I hate trying to post from my iPhone. I did a huge post and went to post it, and it had logged me out. Grr.
My round of Chemo is done for another 23 days, and this round was particularly "easy" compared to previous. I didn't have any nausea at all, or any of the other big side effects that could happen. I mostly got tired by the evening, but with how much I've been doing and getting things done, and looking after Carter while Matt's working (days this week, and has had 2 late shifts, leaves at 6am and hasn't been home until 10 and 10:30), I think that's pretty normal.
I had a ton of other things to post, what I've been doing, getting ready for my grandparents, etc etc, but it's too much to type it all over again. The only thing driving me crazy is that I'm still on steroids. I've been started on reducing it, but they don't want me totally off for at least a month. I'm still having sleeping issues, which I'm blaming on the steroids, so I'm anxious to get off them so that I can SLEEP! It would help me a lot more getting things done, not being as tired and worn out
Mostly I'm still working to keep things POSITIVE! It helps more than anything to keep me strong and fight. I think that helps me more than anything.
My round of Chemo is done for another 23 days, and this round was particularly "easy" compared to previous. I didn't have any nausea at all, or any of the other big side effects that could happen. I mostly got tired by the evening, but with how much I've been doing and getting things done, and looking after Carter while Matt's working (days this week, and has had 2 late shifts, leaves at 6am and hasn't been home until 10 and 10:30), I think that's pretty normal.
I had a ton of other things to post, what I've been doing, getting ready for my grandparents, etc etc, but it's too much to type it all over again. The only thing driving me crazy is that I'm still on steroids. I've been started on reducing it, but they don't want me totally off for at least a month. I'm still having sleeping issues, which I'm blaming on the steroids, so I'm anxious to get off them so that I can SLEEP! It would help me a lot more getting things done, not being as tired and worn out
Mostly I'm still working to keep things POSITIVE! It helps more than anything to keep me strong and fight. I think that helps me more than anything.
Yay for easy chemo!! Have you thought about doing an Amazon wish list? If you make one and link it here anyone that wants to cheer you up can send you things off of it. I think it even keeps your address hidden (although I'm not sure). Keep thinking positive Nilly - you're freaking amazing and I'm in awe of you.
I didn't even know Amazon wishlists exist! I'll look into it, you guys are so sweet
I have a cleaning lady at home today, ALL DAY, doing a full clean of the house (including the appliances and an oven clean!) and it's amazing to have this place CLEAN before grandma and grandpa show up, and not have to worry about it myself.
I have a cleaning lady at home today, ALL DAY, doing a full clean of the house (including the appliances and an oven clean!) and it's amazing to have this place CLEAN before grandma and grandpa show up, and not have to worry about it myself.
I know I don't post much, but Nilly, you're awesome. I'm so happy that you're home, I am SO proud of you. You have such a great attitude towards this whole situation, and you are really an inspiration. I'm sick a lot and I don't have HALF the amount of positive attitude you do.
I also wanted to say, I feel you on the steroids. They mess me up!
I also wanted to say, I feel you on the steroids. They mess me up!
Time for a big Cancer Update! I figured June 1st would be a good time to put out a big update, since we're getting close to 5 months. It's been quite a crazy 5 months!
The biggest thing for me to say is that overall, I feel fantastic! Even just feeling from the beginning of May, and now, I have come to the point that I really feel like MYSELF! This is probably the most important things I wanted to make sure everyone is aware of. It's been a long road when I still felt like so many icky things, and now I feel like myself. I haven't felt like myself even when I was pregnant (though I didn't realize I was having symptoms to my brain tumor, there were a lot of things!). This to me, feels wonderful to be able to say "I feel like ME!".
This month I had an easy time with Chemo! I didn't throw up once, felt overall fine, and maybe a little tired. I feel incredibly lucky that I'm having a positive experience with Chemo, since I know so many who take this have terrible side effects. I am thankful for not having to struggle with any serious side effects. I do take them right as I'm falling asleep, and take nausea pills (trying to prevent, which seems to work!). Chemo is still only 5 days by pill, so I do feel blessed that the schedule is something that's manageable.
I've now had 4 treatments of DCA so far. (http://www.thedcasite.com/ If you want more information!) I will be doing 3 weeks on and not doing the treatment while I'm on Chemo. I got the first one done at the clinic in Toronto, and the other treatments have been done at home. It's actually nice to just relax at home (even with an IV). We haven't heard back from VON is they are able to do my IV's, but my wonderful neighbour Mel has been able to do them for me, and has kindly said she would be able to continue if necessary. I've been doing the treatments closer to bedtime, because it does make me very tired. Otherwise I have had no noticeable side effects, and it has been overall very positive.
I do take a LOT of pills. I'm still on an anti-seizure drug, which I think is just a precaution because I've still only had the one when Carter was born and pointed us in the direction of anything in the first place! I am still on steroids, but I'm weaning down, and should be off of it within a month. They do mess up my sleeping, so I'd be very happy to be done with steroids! My sleep issues have been my most frustrating issue. I do take a TON of supplements, for various reasons. There's no point of going through each one, but I take a lot. A lot. A LOT. It was something I had trouble with at first, but it seems easy(ier) now. So I have my medicinal prescriptions, then a group of things from the nutritionist and naturopath, then a giant group of supplements that Matthew Harris had studied pretty hard and chose for many reason. It might seem like a lot, but they're all for good reasons so I don't complain (these days!).
I do have a wicked issue with my sinuous, which started when I was in the hospital and has not gone away yet. I have a cough that started last week, that is also the same symptoms (or so it seems). None of the doctors seem that stressed about it (even though it's driving ME crazy), but I've been prescribed antibiotics again. We'll see how it goes.
Now a few not "cancer" things:
My grandparents (Beaulieu) are here visiting and will be here until the middle of June. It's been wonderful so far, and they are being very helpful, even when we haven't wanted to ask for help! It's been really special visiting with them, and I'm very happy. Carter is crazy about them! He's having a lot of fun too, getting lots of attention and cuddles.
Carter has grown so much, it's pretty amazing. He has the greatest laugh, he's really chattery, and is generally a happy, cheerful baby. We just adore him, of course. He's huge. We need to have him weight soon, since I have no idea what he weighs right now, but he's a BIG boy! I realized a lot of his clothes are starting to grow out already! He's such a great baby. We're very blessed for how wonderful he has been for us.
I want to thank everyone for the continue support I've received. It's been so wonderful to receive such words, cards, phone calls, e-mails, texts, and FB messages. I can't tell how amazingly helpful they have been for me, helping to keep my spirits up, and stay as positive as I've been working to achieve. I wish I could say more than THANK YOU! Everyone has been so incredibly wonderful. Also, the incredibly HUGE support we've received financially from so many people, has been so incredibly amazing! We've been shown something I didn't even understand or expect. It has been so incredibly helpful to have such financial support, and will make SUCH a difference, since a lot of things are not covered by OHIP or other systems.
THANK YOU and GIANT HUGS to everyone who has been so wonderful. I love you all so much!
The biggest thing for me to say is that overall, I feel fantastic! Even just feeling from the beginning of May, and now, I have come to the point that I really feel like MYSELF! This is probably the most important things I wanted to make sure everyone is aware of. It's been a long road when I still felt like so many icky things, and now I feel like myself. I haven't felt like myself even when I was pregnant (though I didn't realize I was having symptoms to my brain tumor, there were a lot of things!). This to me, feels wonderful to be able to say "I feel like ME!".
This month I had an easy time with Chemo! I didn't throw up once, felt overall fine, and maybe a little tired. I feel incredibly lucky that I'm having a positive experience with Chemo, since I know so many who take this have terrible side effects. I am thankful for not having to struggle with any serious side effects. I do take them right as I'm falling asleep, and take nausea pills (trying to prevent, which seems to work!). Chemo is still only 5 days by pill, so I do feel blessed that the schedule is something that's manageable.
I've now had 4 treatments of DCA so far. (http://www.thedcasite.com/ If you want more information!) I will be doing 3 weeks on and not doing the treatment while I'm on Chemo. I got the first one done at the clinic in Toronto, and the other treatments have been done at home. It's actually nice to just relax at home (even with an IV). We haven't heard back from VON is they are able to do my IV's, but my wonderful neighbour Mel has been able to do them for me, and has kindly said she would be able to continue if necessary. I've been doing the treatments closer to bedtime, because it does make me very tired. Otherwise I have had no noticeable side effects, and it has been overall very positive.
I do take a LOT of pills. I'm still on an anti-seizure drug, which I think is just a precaution because I've still only had the one when Carter was born and pointed us in the direction of anything in the first place! I am still on steroids, but I'm weaning down, and should be off of it within a month. They do mess up my sleeping, so I'd be very happy to be done with steroids! My sleep issues have been my most frustrating issue. I do take a TON of supplements, for various reasons. There's no point of going through each one, but I take a lot. A lot. A LOT. It was something I had trouble with at first, but it seems easy(ier) now. So I have my medicinal prescriptions, then a group of things from the nutritionist and naturopath, then a giant group of supplements that Matthew Harris had studied pretty hard and chose for many reason. It might seem like a lot, but they're all for good reasons so I don't complain (these days!).
I do have a wicked issue with my sinuous, which started when I was in the hospital and has not gone away yet. I have a cough that started last week, that is also the same symptoms (or so it seems). None of the doctors seem that stressed about it (even though it's driving ME crazy), but I've been prescribed antibiotics again. We'll see how it goes.
Now a few not "cancer" things:
My grandparents (Beaulieu) are here visiting and will be here until the middle of June. It's been wonderful so far, and they are being very helpful, even when we haven't wanted to ask for help! It's been really special visiting with them, and I'm very happy. Carter is crazy about them! He's having a lot of fun too, getting lots of attention and cuddles.
Carter has grown so much, it's pretty amazing. He has the greatest laugh, he's really chattery, and is generally a happy, cheerful baby. We just adore him, of course. He's huge. We need to have him weight soon, since I have no idea what he weighs right now, but he's a BIG boy! I realized a lot of his clothes are starting to grow out already! He's such a great baby. We're very blessed for how wonderful he has been for us.
I want to thank everyone for the continue support I've received. It's been so wonderful to receive such words, cards, phone calls, e-mails, texts, and FB messages. I can't tell how amazingly helpful they have been for me, helping to keep my spirits up, and stay as positive as I've been working to achieve. I wish I could say more than THANK YOU! Everyone has been so incredibly wonderful. Also, the incredibly HUGE support we've received financially from so many people, has been so incredibly amazing! We've been shown something I didn't even understand or expect. It has been so incredibly helpful to have such financial support, and will make SUCH a difference, since a lot of things are not covered by OHIP or other systems.
THANK YOU and GIANT HUGS to everyone who has been so wonderful. I love you all so much!
Thanks Renee as always
So I do have something I forgot to add: My hair seems to be starting to fill in in many areas again. YAY for hair growing!!
On a sad note, a step aunt of Matt's has lost her fight with Cancer and passed away on Thursday. She had a very long and very hard battle ith many types over the time, and it was a prime example of EVIL CANCER that I am trying so hard to avoid. Sometimes it wins, and that just blows. We will be going to her funeral this week.
So I do have something I forgot to add: My hair seems to be starting to fill in in many areas again. YAY for hair growing!!
On a sad note, a step aunt of Matt's has lost her fight with Cancer and passed away on Thursday. She had a very long and very hard battle ith many types over the time, and it was a prime example of EVIL CANCER that I am trying so hard to avoid. Sometimes it wins, and that just blows. We will be going to her funeral this week.