I'm starting to have some anxiety about my alien port removal. Surgery is scary for me. I think it's the whole being put under anesthesia thing. No worries, it's not enough anxiety to take anything and I'm still sleeping (thank you, ambien). Just don't look too closely at my fingernails because I'm totally finding myself picking at them again.
Luckily next week is looking to be so busy that hopefully I won't think about surgery at all. And it's a quickie procedure. I'm going to be okay.
I think.
Sigh.
Saturday, May 29, 2010
Thursday, May 27, 2010
Who guessed the right measurements?
I got so busy the last couple of days, I forgot to update about my wound! Great news, it's getting smaller: 2.4cm long by about 2cm deep. Nice. I'm glad there's lots of healing going on. Wouldn't it be the shit if it didn't take 6 months to heal? Healing thoughts are appreciated.
The appointment went well. I brought the kids with me, my own little entourage, haha. They are almost always very patient and curious when I bring them to the various appointments I have. Lots of questions are asked, and it's such a unique learning experience. You're not getting this kind of education at public school, that's for sure. While it's kind of sad that children so little had to learn about something as crappy as cancer by living with it, it's also cool to share with them. When a 5 year old can tell you what a colonoscopy is, I think that's all kinds of awesome. When that same 5 year old is explaining to her little friends about my ostomy supplies (dug out of my purse, of course) like it's normal, it makes me smile. I hope this experience helps my children have more compassion, be more willing to help, and sensitive to people who are struggling.
Back to the appointment...the nurse who checked me in was all, "I'll be taking your dressing down and then one of the other nurses will come in." She was surprised that all she had to do was take some gauze out. I guess she hasn't seen me in a while. ;) It's such a relief to go in and NOT have the whole experience hurt. I'm sure the nurses are much happier now too. I know it was hard for them as well as me. The wound looks great, and is very clean, according to the nurses, so that's good.
The next thing? I go in for bloodwork next week and I also have the port removed. I like that things are wrapping up. Finally.
I feel so good. Yes, I get tired, but that's a minor thing. I'm back to doing housework, back to meeting friends, adjusting to the new normal. The new normal is a lot like the old normal, for me anyway. At least I think it is. I suppose it's been a while since I felt "normal." And what does that mean anyway? I am living life and greatly enjoying the opportunity to do so. I'm thankful every day for the friends and family I have, and for my kids and husband. I'm thankful that I get to feel good and that I get to do the things I want to do. I'm thankful it's not so much of a struggle anymore.
Are things always easy? Uh, NO. My ass hurts sometimes at the end of the day. I have to tell you, as good as Eric is at wound packing, it's still a bummer. And don't even get me started on my ugly swollen right ankle...blah.
But I know that the good is greatly outweighing the bad right now. Believe me, I'm sending that positive energy to anyone and everyone I know who is having a hard time. It's the least I can do.
The appointment went well. I brought the kids with me, my own little entourage, haha. They are almost always very patient and curious when I bring them to the various appointments I have. Lots of questions are asked, and it's such a unique learning experience. You're not getting this kind of education at public school, that's for sure. While it's kind of sad that children so little had to learn about something as crappy as cancer by living with it, it's also cool to share with them. When a 5 year old can tell you what a colonoscopy is, I think that's all kinds of awesome. When that same 5 year old is explaining to her little friends about my ostomy supplies (dug out of my purse, of course) like it's normal, it makes me smile. I hope this experience helps my children have more compassion, be more willing to help, and sensitive to people who are struggling.
Back to the appointment...the nurse who checked me in was all, "I'll be taking your dressing down and then one of the other nurses will come in." She was surprised that all she had to do was take some gauze out. I guess she hasn't seen me in a while. ;) It's such a relief to go in and NOT have the whole experience hurt. I'm sure the nurses are much happier now too. I know it was hard for them as well as me. The wound looks great, and is very clean, according to the nurses, so that's good.
The next thing? I go in for bloodwork next week and I also have the port removed. I like that things are wrapping up. Finally.
I feel so good. Yes, I get tired, but that's a minor thing. I'm back to doing housework, back to meeting friends, adjusting to the new normal. The new normal is a lot like the old normal, for me anyway. At least I think it is. I suppose it's been a while since I felt "normal." And what does that mean anyway? I am living life and greatly enjoying the opportunity to do so. I'm thankful every day for the friends and family I have, and for my kids and husband. I'm thankful that I get to feel good and that I get to do the things I want to do. I'm thankful it's not so much of a struggle anymore.
Are things always easy? Uh, NO. My ass hurts sometimes at the end of the day. I have to tell you, as good as Eric is at wound packing, it's still a bummer. And don't even get me started on my ugly swollen right ankle...blah.
But I know that the good is greatly outweighing the bad right now. Believe me, I'm sending that positive energy to anyone and everyone I know who is having a hard time. It's the least I can do.
Tuesday, May 25, 2010
Excitement
We were sitting around tonight when I happened to look at my legs. My right ankle was swollen and kind of gross, very much like when I was pregnant. It was only the one leg, which I thought was odd. My oncologist asks EVERY SINGLE TIME if there's any swelling in my legs. They must ask that for a reason, right? Eric suggested that I call the oncology unit. I talked to the on call oncologist (say that one five times fast) who after hearing about the swelling and the whole rectal cancer thing said I needed to go to the emergency room to have my leg ultrasounded. Apparently cancer patients are at risk for blood clots. Who knew??
So Eric and I loaded the kids up in the car for a fun field trip to the hospital. The last time I was in an emergency room I had a concussion from a car accident. I didn't realize how much hurry up and wait there was in an ER since I don't spend much time there. Anyhoo, the very nice ultrasound tech came and squirted the jelly on my leg, looked at the veins, listened to the blood flow, and that was pretty much it. Having a baby ultrasound is much more fun, in case you were wondering. A radiologist had to look at the images and report back to the doctor, who then had to talk to us. More waiting! More kids bouncing around the tiny room we were in because they were overtired (this occured right around bedtime, sigh). More me being worried that I had a blood clot that I was sure would totally disrupt my plans for the rest of the week.
After a while, the doctor came back and said I was fine. Eric took the kids to get the car from the valet (oh la la!) while I got dressed. The nurse gave me discharge papers and we left.
See? Exciting!
But not really. I'm supposed to ask my oncologist to take a look when I go in next week. I guess it's about time I asked why they keep pestering me about swollen legs.
Anyhoo, Eric posted a fun pic of the party in the ER on facebook. You should go look.
So Eric and I loaded the kids up in the car for a fun field trip to the hospital. The last time I was in an emergency room I had a concussion from a car accident. I didn't realize how much hurry up and wait there was in an ER since I don't spend much time there. Anyhoo, the very nice ultrasound tech came and squirted the jelly on my leg, looked at the veins, listened to the blood flow, and that was pretty much it. Having a baby ultrasound is much more fun, in case you were wondering. A radiologist had to look at the images and report back to the doctor, who then had to talk to us. More waiting! More kids bouncing around the tiny room we were in because they were overtired (this occured right around bedtime, sigh). More me being worried that I had a blood clot that I was sure would totally disrupt my plans for the rest of the week.
After a while, the doctor came back and said I was fine. Eric took the kids to get the car from the valet (oh la la!) while I got dressed. The nurse gave me discharge papers and we left.
See? Exciting!
But not really. I'm supposed to ask my oncologist to take a look when I go in next week. I guess it's about time I asked why they keep pestering me about swollen legs.
Anyhoo, Eric posted a fun pic of the party in the ER on facebook. You should go look.
Look out, Wound Care Nurses!
Because the kids and I will be crashing your office tomorrow morning around 10am. I hope you're ready. ;)
On the wound front, I think things are going well. Sometimes my ass hurts, sometimes it doesn't. Today it was pretty okay. Yesterday, not so much. Eric hollered at me to take some ibuprofen, but honestly I didn't think about it. That sounds silly, doesn't it? If you hurt, you'd take something, right? It's actually not surprising that I'd just blow off taking something, because I kind of tend to do that. I said I would try to remember that it's an option.
Anyway, maybe we'll get some measurements tomorrow! Who wants to know how deep and long my ass wound is?? Any guesses? It will be like that Guess How Much The Baby Weighs, only with an ass wound. Good times.
On the No More Chemo Front, Eric reminded me that this Thursday is my first No Chemo Thursday. If I was still doing the every other week cycle, this would have been a chemo week. Have I mentioned lately how thankful I am to be done? I really really am. It's the best feeling to be able to start doing things we missed out on for so many months. We're getting out, seeing friends, going grocery shopping...it's the best. I'm glad we have this month before we move to spend time with all the people who were so awesome to us during this whole lame-o cancer thing.
My alien port comes out in a week and a half! I'm already starting to get anxious about being put under, I don't like it. However, I know myself, and watching the surgeon cut into me while being awake...no. Not happening. I seem to tolerate anesthesia well, so I'm sure it will be no big deal.
On the wound front, I think things are going well. Sometimes my ass hurts, sometimes it doesn't. Today it was pretty okay. Yesterday, not so much. Eric hollered at me to take some ibuprofen, but honestly I didn't think about it. That sounds silly, doesn't it? If you hurt, you'd take something, right? It's actually not surprising that I'd just blow off taking something, because I kind of tend to do that. I said I would try to remember that it's an option.
Anyway, maybe we'll get some measurements tomorrow! Who wants to know how deep and long my ass wound is?? Any guesses? It will be like that Guess How Much The Baby Weighs, only with an ass wound. Good times.
On the No More Chemo Front, Eric reminded me that this Thursday is my first No Chemo Thursday. If I was still doing the every other week cycle, this would have been a chemo week. Have I mentioned lately how thankful I am to be done? I really really am. It's the best feeling to be able to start doing things we missed out on for so many months. We're getting out, seeing friends, going grocery shopping...it's the best. I'm glad we have this month before we move to spend time with all the people who were so awesome to us during this whole lame-o cancer thing.
My alien port comes out in a week and a half! I'm already starting to get anxious about being put under, I don't like it. However, I know myself, and watching the surgeon cut into me while being awake...no. Not happening. I seem to tolerate anesthesia well, so I'm sure it will be no big deal.
Sunday, May 23, 2010
I never knew how strong I was until being strong was the only choice I had.
Isn't this so so true? Someone on one of my message boards has this as her signature, and it really resonated with me tonight. I can tell you all kinds of shitty things about having cancer but one thing that came out of all this was how strong I learned I am. How resilient I am. How determined I am. How much I love my husband and children. There were a lot of times that I had to dig deep, but I was able to find the strength I needed inside myself. Without my experiences, I might never have discovered this.
Isn't this so so true? Someone on one of my message boards has this as her signature, and it really resonated with me tonight. I can tell you all kinds of shitty things about having cancer but one thing that came out of all this was how strong I learned I am. How resilient I am. How determined I am. How much I love my husband and children. There were a lot of times that I had to dig deep, but I was able to find the strength I needed inside myself. Without my experiences, I might never have discovered this.
Saturday, May 22, 2010
I'll tell you what's nice
Having the laptop back so I don't have to sit on the uncomfortable computer chair.
When chairs in general are padded.
Chinese food.
Having my parents here to visit.
Ambien (and therefore, sleep)
Cheesy top 40s and hip hop music.
Malibu and pineapple juice x 2 or 3
Eric being home.
Wearing pants that have not been used previously for sleeping.
Layering shirts.
Being done with chemo!!
A week full of fun stuff and not lame-o dressing changes.
Driving around in my car listening to Lady Gaga.
Columbus, GA newspapers.
Did I mention that Eric was home?
Pelicans.
Walking around the nature center today with my kids.
I hope nice things are happening for all of you too. :)
When chairs in general are padded.
Chinese food.
Having my parents here to visit.
Ambien (and therefore, sleep)
Cheesy top 40s and hip hop music.
Malibu and pineapple juice x 2 or 3
Eric being home.
Wearing pants that have not been used previously for sleeping.
Layering shirts.
Being done with chemo!!
A week full of fun stuff and not lame-o dressing changes.
Driving around in my car listening to Lady Gaga.
Columbus, GA newspapers.
Did I mention that Eric was home?
Pelicans.
Walking around the nature center today with my kids.
I hope nice things are happening for all of you too. :)
Wednesday, May 19, 2010
Normal!!!
If you consider sitting on a pillow at a park bench, that is. Hah.
Yes, the kids and I ventured to the park today to meet some friends. It has been soooooo long since I was able to take my kids to the park. Doing normal things feels good.
I also did such things as laundry, emptying the dishwasher, making pita bread (in progress), and sewing on Eli's cloth trainers. I may not move exceptionally fast, but things are getting done. The downside is that I'm wiped out right now.
Other happenings around here:
I downsized the wafer for my ostomy, which I am undecided about liking. This is kind of gross, but the hole in the pouch is smaller, so it's harder to dump out. I think the pouches I have are meant to be one use, but man, that's wasteful. As long as the filter is working (ie I don't smell like the Neenah paper factories), I'm good with emptying the pouch. There are little biodegradable baggies I can use so those get changed instead of the whole pouch that I still need to try. That might be a solution to my throwing too much away conflict. If only change weren't so hard. I'll work on it, because the amount of ostomy trash does kind of bug me. It's not a ton, I suppose, but for someone who has worked really hard to reduce the amount of garbage our family tosses, it's more than I would like.
I do think the smaller wafer is less noticeable under my shirts. That's nice, although I don't care that much if someone sees the pouch. It's no big deal.
Have I mentioned that NOT wearing pajama pants is nice? Well it is.
Ugh, I'm ready for a nap.
Yes, the kids and I ventured to the park today to meet some friends. It has been soooooo long since I was able to take my kids to the park. Doing normal things feels good.
I also did such things as laundry, emptying the dishwasher, making pita bread (in progress), and sewing on Eli's cloth trainers. I may not move exceptionally fast, but things are getting done. The downside is that I'm wiped out right now.
Other happenings around here:
I downsized the wafer for my ostomy, which I am undecided about liking. This is kind of gross, but the hole in the pouch is smaller, so it's harder to dump out. I think the pouches I have are meant to be one use, but man, that's wasteful. As long as the filter is working (ie I don't smell like the Neenah paper factories), I'm good with emptying the pouch. There are little biodegradable baggies I can use so those get changed instead of the whole pouch that I still need to try. That might be a solution to my throwing too much away conflict. If only change weren't so hard. I'll work on it, because the amount of ostomy trash does kind of bug me. It's not a ton, I suppose, but for someone who has worked really hard to reduce the amount of garbage our family tosses, it's more than I would like.
I do think the smaller wafer is less noticeable under my shirts. That's nice, although I don't care that much if someone sees the pouch. It's no big deal.
Have I mentioned that NOT wearing pajama pants is nice? Well it is.
Ugh, I'm ready for a nap.
Tuesday, May 18, 2010
Ten thoughts in my head
Want a peek inside my head? Your wish is my command.
1. It irritates me that vacuuming tires me out so much. Seriously. I could probably go take a nap now.
2. Going to the wound care nurses is a lot more fun all drugged up. I suppose the upside to being oxy free is driving myself. I do like to drive.
3. My wound, speaking of, is doing fine. The nurse suggested that we try to change it three times a day instead of two if we can. She explained that the cells needed for healing like being wet but if they get too wet they drown. I don't want drowning cells in my ass, that just doesn't sound like a good situation. So we'll see what we can do. She said even doing it just on the weekends would help.
4. I was really rocking my NOT pajama pants today, and a couple of my new shirts (layering, people, it's all about layering).
5. I thought I would feel good enough today to maybe do some sewing while the kids were off having a great time with Uncle Mike, but I really didn't. So I rested, caught up on House MD, and ate a big salad. There's always tomorrow.
6. It's still weird that chemo is over. Perhaps it was because I was sick over the weekend, but it was all very anticlimatic. Overall, I think that's okay. I suspect some would like to make a big deal, but I don't really. I won't turn down a celebratory drink, but I have a hard time getting all happy when there are others still fighting. Congratulations and hugs, however, would be just fine with me.
7. I am really thankful for my husband and my children. I'm thankful that I can slowly be their wife and mother again. I'm thankful that the focus will be off me and onto something else, like us living our lives and having adventures. I'm thankful that we get to have adventures together.
8. I am freaking hungry and want to eat everything. That's good right? Vegan food blogs torment me and yet I still keep looking at them and snatching recipes. After not enjoying food and eating for so long, I'm looking forward to cooking more often.
9. Lately I have a hard time getting stressed out about the little things. It's probably the prozac. And I think that's okay.
10. As much as I want to be back to normal, I'm being gentle with myself. I'm letting myself rest when I'm tired, eat when I'm hungry, laugh when things are funny, and cry when I need to. Perhaps self care, which often is overlooked by us busy women, is one of the biggest lessons in this shitty situation. There's nothing like cancer to force one to slow down and heal. I hope people don't think I'm a slacker, and I'm really making an effort NOT to extend myself too much.
There you go. Of course there's always more, but we'll save that for another day.
1. It irritates me that vacuuming tires me out so much. Seriously. I could probably go take a nap now.
2. Going to the wound care nurses is a lot more fun all drugged up. I suppose the upside to being oxy free is driving myself. I do like to drive.
3. My wound, speaking of, is doing fine. The nurse suggested that we try to change it three times a day instead of two if we can. She explained that the cells needed for healing like being wet but if they get too wet they drown. I don't want drowning cells in my ass, that just doesn't sound like a good situation. So we'll see what we can do. She said even doing it just on the weekends would help.
4. I was really rocking my NOT pajama pants today, and a couple of my new shirts (layering, people, it's all about layering).
5. I thought I would feel good enough today to maybe do some sewing while the kids were off having a great time with Uncle Mike, but I really didn't. So I rested, caught up on House MD, and ate a big salad. There's always tomorrow.
6. It's still weird that chemo is over. Perhaps it was because I was sick over the weekend, but it was all very anticlimatic. Overall, I think that's okay. I suspect some would like to make a big deal, but I don't really. I won't turn down a celebratory drink, but I have a hard time getting all happy when there are others still fighting. Congratulations and hugs, however, would be just fine with me.
7. I am really thankful for my husband and my children. I'm thankful that I can slowly be their wife and mother again. I'm thankful that the focus will be off me and onto something else, like us living our lives and having adventures. I'm thankful that we get to have adventures together.
8. I am freaking hungry and want to eat everything. That's good right? Vegan food blogs torment me and yet I still keep looking at them and snatching recipes. After not enjoying food and eating for so long, I'm looking forward to cooking more often.
9. Lately I have a hard time getting stressed out about the little things. It's probably the prozac. And I think that's okay.
10. As much as I want to be back to normal, I'm being gentle with myself. I'm letting myself rest when I'm tired, eat when I'm hungry, laugh when things are funny, and cry when I need to. Perhaps self care, which often is overlooked by us busy women, is one of the biggest lessons in this shitty situation. There's nothing like cancer to force one to slow down and heal. I hope people don't think I'm a slacker, and I'm really making an effort NOT to extend myself too much.
There you go. Of course there's always more, but we'll save that for another day.
Monday, May 17, 2010
Whine whine
When am I going to feel like myself again? I hate the creepy crawly restless feeling I get from chemo, the hot flashes, the way my lips and teeth feel weird. Don't get me wrong, I feel better today, but geez. I'm at the point where I'm tired of sitting in the recliner, but getting up and doing stuff sounds so daunting because I get exhausted by silly things like making toast for the kids.
I think my leaky ass wound and mysterious rashy ass doesn't help. All right, the ass wound doesn't leak all day long, just when the gauze starts to get saturated (haha, GROSS). And I do have some sort of perhaps yeasty rash around the wound area. That kind of cracks me up in an "If I don't laugh I'll cry" sort of way because I went something like 13 weeks with the wound vac and had little to no skin issues. Luckily I get to see the wound care nurses tomorrow and I can be all, "Hey, check this rash out." And they totally will. Maybe there's some cream or something I can use on it.
I just want to do what I want to do without getting so tired, and without my butt hurting. I'm frustrated that things aren't magically normal, even though I'm done with chemo. Rationally I understand it takes time for my body to heal, it's going to take time for the wound to heal. Sigh.
I think my leaky ass wound and mysterious rashy ass doesn't help. All right, the ass wound doesn't leak all day long, just when the gauze starts to get saturated (haha, GROSS). And I do have some sort of perhaps yeasty rash around the wound area. That kind of cracks me up in an "If I don't laugh I'll cry" sort of way because I went something like 13 weeks with the wound vac and had little to no skin issues. Luckily I get to see the wound care nurses tomorrow and I can be all, "Hey, check this rash out." And they totally will. Maybe there's some cream or something I can use on it.
I just want to do what I want to do without getting so tired, and without my butt hurting. I'm frustrated that things aren't magically normal, even though I'm done with chemo. Rationally I understand it takes time for my body to heal, it's going to take time for the wound to heal. Sigh.
Saturday, May 15, 2010
Goodbye forever, little pump!
Yes, the little pump is off. Hopefully that will be the last time anyone has to access my alien port before it comes out on June 4th. That's right, my surgeon gets to hack into me one last time. For the record, my oncologist was totally supportive of me removing the port. He told us that my chances of recurrance were 50/50 without the 8 cycles of chemo, but with chemo I'm down to a 25% chance of recurrance. I feel comfortable ditching the alien port with those odds, and it can always be put back in should I need it.
But let's all hope that doesn't happen, right?
I've been thinking more about how many people have helped us through this. Anyone who made a meal, took care of my children when I couldn't, stopped by to check on us, drove us places...there are countless things people have done to support us.
Denelle, the muffins were fantastic. Om nom nom nom. Your willingness to listen and ask questions made me feel normal. We loved your visits, your veg chili, and how much you care about us. It means a LOT.
Heidi, Vanessa, Beth, Jehan...anyone who is willing to take on my hooligans in addition to their own children is a saint! Thank you for helping get them out of the house and doing fun things with them when I wasn't able to do so. More thank yous to people who offered, because tons of people did. I'm so lucky to be part of such a great community of people.
Sarah and Scott, the soups you made me were so yummy! Every single one of them was enjoyed. We love your visits, and thank you for helping while I was in the hospital.
Katie, thank you for asking how I'm doing, and for loaning us your fun schooly activities. :)
I'm sure I'm missing people. Look at how much help and support we've had over the past nine months! It's amazing and humbling and awesome. It has made me look at the world differently, look for ways I can help others.
This isn't the end. It's a new beginning. That doesn't mean we forget the past, but instead I think we celebrate triumphs, mourn things that didn't go so well, and move forward knowing that we're all stronger people.
But let's all hope that doesn't happen, right?
I've been thinking more about how many people have helped us through this. Anyone who made a meal, took care of my children when I couldn't, stopped by to check on us, drove us places...there are countless things people have done to support us.
Denelle, the muffins were fantastic. Om nom nom nom. Your willingness to listen and ask questions made me feel normal. We loved your visits, your veg chili, and how much you care about us. It means a LOT.
Heidi, Vanessa, Beth, Jehan...anyone who is willing to take on my hooligans in addition to their own children is a saint! Thank you for helping get them out of the house and doing fun things with them when I wasn't able to do so. More thank yous to people who offered, because tons of people did. I'm so lucky to be part of such a great community of people.
Sarah and Scott, the soups you made me were so yummy! Every single one of them was enjoyed. We love your visits, and thank you for helping while I was in the hospital.
Katie, thank you for asking how I'm doing, and for loaning us your fun schooly activities. :)
I'm sure I'm missing people. Look at how much help and support we've had over the past nine months! It's amazing and humbling and awesome. It has made me look at the world differently, look for ways I can help others.
This isn't the end. It's a new beginning. That doesn't mean we forget the past, but instead I think we celebrate triumphs, mourn things that didn't go so well, and move forward knowing that we're all stronger people.
Friday, May 14, 2010
More thoughts
Liz, rubarbaritas would be awesome. I'm going to give my body a couple weeks to get rid of the chemo before I start boozing it up. Gotta protect my liver, yo.
Julie, the flowers look gorgeous on my mantel (and away from my flower arranger Reese, haha). I am humbled by your support of us, your strength. Your family is in my thoughts all the time, and I'm so lucky to know you.
Maggie, thank you for being my fashion consultant at Old Navy! I'm a pretty clueless shopper, so who knows how I would have fared on my own. And sometimes I just need someone to tell me it's okay to buy some stuff for myself (and special thanks to Eric for funding my new wardrobe!!). It was a great fun evening. Not to mention all the food organizing and letting us hang out at your house and you watching my babies. I'm so fortunate you're in my life.
Mom and Dad, you've been an incredible support even if you don't think so, being that you're so far away. Visits, messages, and we cannot forget Mom being her with us for the month after my surgery. And the Annie's meals!!!! Om nom nom nom. It means so much to us.
Nana and Poppy (my other mom and dad!!!) your help has been amazing and greatly appreciated. Whether it was Poppy helping with the kids when I was sick or Nana driving me to wound dressing chnages or the frozen meals for Eric and the kids. All those little things might not seem like much, but wow. It made a huge difference in our lives.
Terri and Mike, thanks for all the wound vac taxi services and for helping with Reese and Eli when I wasn't able to take care of them. It was a relief that I had someone who loves them to play with them and be with them. Your help meant so much to me.
There are so so many more people to thank. I just get teary eyed, and the kids are hanging around. I don't like them to see me cry too much. They get stressed out and worried. So I shall be back. :)
I'm feeling okay today, much better than yesterday right after chemo. Mostly I just feel tired, but my headache is gone and my legs don't ache like they did. We're headed to hang out with Maggie today. I love just sitting on her couch watching the kids play.
Julie, the flowers look gorgeous on my mantel (and away from my flower arranger Reese, haha). I am humbled by your support of us, your strength. Your family is in my thoughts all the time, and I'm so lucky to know you.
Maggie, thank you for being my fashion consultant at Old Navy! I'm a pretty clueless shopper, so who knows how I would have fared on my own. And sometimes I just need someone to tell me it's okay to buy some stuff for myself (and special thanks to Eric for funding my new wardrobe!!). It was a great fun evening. Not to mention all the food organizing and letting us hang out at your house and you watching my babies. I'm so fortunate you're in my life.
Mom and Dad, you've been an incredible support even if you don't think so, being that you're so far away. Visits, messages, and we cannot forget Mom being her with us for the month after my surgery. And the Annie's meals!!!! Om nom nom nom. It means so much to us.
Nana and Poppy (my other mom and dad!!!) your help has been amazing and greatly appreciated. Whether it was Poppy helping with the kids when I was sick or Nana driving me to wound dressing chnages or the frozen meals for Eric and the kids. All those little things might not seem like much, but wow. It made a huge difference in our lives.
Terri and Mike, thanks for all the wound vac taxi services and for helping with Reese and Eli when I wasn't able to take care of them. It was a relief that I had someone who loves them to play with them and be with them. Your help meant so much to me.
There are so so many more people to thank. I just get teary eyed, and the kids are hanging around. I don't like them to see me cry too much. They get stressed out and worried. So I shall be back. :)
I'm feeling okay today, much better than yesterday right after chemo. Mostly I just feel tired, but my headache is gone and my legs don't ache like they did. We're headed to hang out with Maggie today. I love just sitting on her couch watching the kids play.
Thursday, May 13, 2010
I quit you, chemo!
But only because I'm done! Today was my last Chemo Thursday, and I am so relieved to be done. I can't even describe it.
Well, maybe I can. It's like someone opened a door and said, "Hey, you don't need to be stuck in this ugly room anymore. Come on out!"
I'm not quite done yet, I suppose. I have the little chemo pump until Saturday morning. Then I have the sickies to look forward to for a few days. And after that? My body can concentrate on getting rid of the chemo and then healing that ass wound.
My mind is very jumbled right now, I'm pretty emotional. Perhaps we can all chat more later. Until then, everyone who has been pulling for me and thinking positive thoughts for me, THANK YOU. I could not have done this by myself. And anyone who is going through this too, big hugs. It's not easy by any means, but you can do it. Sometimes you just have to put on your big girl (or guy) panties and get it done. And I did it.
Well, maybe I can. It's like someone opened a door and said, "Hey, you don't need to be stuck in this ugly room anymore. Come on out!"
I'm not quite done yet, I suppose. I have the little chemo pump until Saturday morning. Then I have the sickies to look forward to for a few days. And after that? My body can concentrate on getting rid of the chemo and then healing that ass wound.
My mind is very jumbled right now, I'm pretty emotional. Perhaps we can all chat more later. Until then, everyone who has been pulling for me and thinking positive thoughts for me, THANK YOU. I could not have done this by myself. And anyone who is going through this too, big hugs. It's not easy by any means, but you can do it. Sometimes you just have to put on your big girl (or guy) panties and get it done. And I did it.
Tuesday, May 11, 2010
Creepy
I'll tell you what's creepy. Pulling the gauze out of your ass wound, that's what. I took my first wound vac free shower this evening, and opted to remove the gauze myself. Gah. I have a new appreciation for anyone who has to do anything related to my ass.
Oh all right, it wasn't that bad. But man. Sometimes my body doesn't feel like MY body, know what I mean? Between the ass wound and the chemo, it's just all around strange. It's frustrating to have to rely on others to pack my wound, but at this point there's no way I could do it myself. Maybe when a long q-tip doesn't have to be used to shove the gauze in...oh I'm sorry, was that a TMI? Hah. Gotcha.
If this wound could heal up super fast, that would be great. I don't like the leaking, I get self concious about the pad shifting. The wound doesn't hurt all the time, but I'm finding that at the end of the day, it's kind of ouchy. It's actually more difficult to sit in hard chairs. I have no idea why. Maybe the overall pain of the wound vac used to distract me from the ass wound pain? I don't know.
It's going to be okay. But 4-6 more months of this nonsense sucks. I hope this is the last bump in the road, because I don't know if I can deal with any more.
Oh all right, it wasn't that bad. But man. Sometimes my body doesn't feel like MY body, know what I mean? Between the ass wound and the chemo, it's just all around strange. It's frustrating to have to rely on others to pack my wound, but at this point there's no way I could do it myself. Maybe when a long q-tip doesn't have to be used to shove the gauze in...oh I'm sorry, was that a TMI? Hah. Gotcha.
If this wound could heal up super fast, that would be great. I don't like the leaking, I get self concious about the pad shifting. The wound doesn't hurt all the time, but I'm finding that at the end of the day, it's kind of ouchy. It's actually more difficult to sit in hard chairs. I have no idea why. Maybe the overall pain of the wound vac used to distract me from the ass wound pain? I don't know.
It's going to be okay. But 4-6 more months of this nonsense sucks. I hope this is the last bump in the road, because I don't know if I can deal with any more.
Monday, May 10, 2010
Livin' the Wound Vac Free Life
That's right, suckas, I ditched that wound vac like whoa today. It feels sooooooooooo good. Do you know how much easier it is to do stuff without dragging a wound vac around? Way easier. My butt isn't pokey. I can get up and down and it's not a big deal.
I still have a wound in my ass that needs to be packed with gauze twice a day. Since there's still drainage, I have to wear a pad. I don't feel too terrible about this because I love my cloth pads. But I can shower every day, I can take a bath if I want. I don't smell like wound. Life got significantly better today.
The surgeon was awesome as usual. He answered all our questions and supports our decision to stop the wound vac. He thinks it might take 4-6 more months for the wound to heal, but he's confident that it will. The wound nurses were also awesome as usual. They suggested I should go see them in ten days so they can check the wound out to make sure things are going well. I hadn't thought to ask about that, but it's good for my peace of mind. When we were saying goodbye to the nurses, I cried. I'm going to miss seeing them and talking to them. They have been so supportive and kind to me, and to my kids. They really made this whole experience easier.
More good news...the surgeon is going to remove my alien port on June 4th. Whoohooo! I wasn't sure he would want to do it because goodness knows he's a busy guy. He said he could do it in his office and he would give me a valium and a percoset, then numb the area. Otherwise he can have me sedated. Guess which one I picked, haha? Having someone cut into me while I'm awake? I don't think so. That is way too creepy for me. So sedation it is. I do feel a little silly for insisting on being sedated for a procedure that will most likely not take more than a handful of minutes. At this point in the game, I'm just so tired of everything I want it to be easy and painless.
This is really going to be done. Really.
I still have a wound in my ass that needs to be packed with gauze twice a day. Since there's still drainage, I have to wear a pad. I don't feel too terrible about this because I love my cloth pads. But I can shower every day, I can take a bath if I want. I don't smell like wound. Life got significantly better today.
The surgeon was awesome as usual. He answered all our questions and supports our decision to stop the wound vac. He thinks it might take 4-6 more months for the wound to heal, but he's confident that it will. The wound nurses were also awesome as usual. They suggested I should go see them in ten days so they can check the wound out to make sure things are going well. I hadn't thought to ask about that, but it's good for my peace of mind. When we were saying goodbye to the nurses, I cried. I'm going to miss seeing them and talking to them. They have been so supportive and kind to me, and to my kids. They really made this whole experience easier.
More good news...the surgeon is going to remove my alien port on June 4th. Whoohooo! I wasn't sure he would want to do it because goodness knows he's a busy guy. He said he could do it in his office and he would give me a valium and a percoset, then numb the area. Otherwise he can have me sedated. Guess which one I picked, haha? Having someone cut into me while I'm awake? I don't think so. That is way too creepy for me. So sedation it is. I do feel a little silly for insisting on being sedated for a procedure that will most likely not take more than a handful of minutes. At this point in the game, I'm just so tired of everything I want it to be easy and painless.
This is really going to be done. Really.
Sunday, May 9, 2010
Happy Mother's Day!
I hope all the mothers out there had a great day today. Mine has been pretty good so far. It's not a chemo weekend, so I actually felt like eating food. I made some yummy vegan food for the cook out we attended, and now there are rumors of Chinese food for dinner. Om nom nom nom.
It's also (hopefully) the last day I'll be wearing the wound vac. Of course it stinks more today than it ever has, blech. It's like the wound is taunting me with stink. I think not smelling like ass would be a very good thing. I'm still nervous about it, but it will be okay. And how nice would it be to pack and clean things and cook without dragging a wound vac around?
I'm trying to decide if I should have the chemo nurses run the Irinotecan and Leucovorin together or separately. I've had it both ways, and they both suck for different reasons. Running them together makes the day go faster, shaving off about an hour or more of time in the chemo lounge. The last time I did it though really kicked my ass. My legs were sore, I felt awful, I was exhausted. So do I spend a bunch of time at the chemo lounge? Or do I suck it up and get out of there fast? Most likely I'll do the latter. I still hate sitting around in the chemo lounge. Chemo makes me feel creepy crawly and like running away.
Is it just me, or do chemo drug names sound like dinosaur names?
I find myself wondering what will change once this is all over. Anything? Nothing? Have the changes happened already and if so, will they stick? In many ways I feel that I haven't changed at all. I still mock things and make wise cracky observations. I'm a goofy trashy music loving vegan sewing gardening fun time having mama just wanting life to be simple and easy. However, I now appreciate the ability to do laundry, to play with my kids, to drive my car. I feel fortunate that I'm able to take my kids to the park or read them a book. When I can load the dishwasher and make dinner, that's a damn good day. Not being able to do things like that makes me thankful for the future, when I can all the time, not just on off chemo weeks.
Someone please remind me of how thankful I am to be doing mundane household chores in a few months when I start bitching about it.
I think I feel more compassion for people who are dealing with cancer. My ears perk up when someone mentions cancer. I wonder what kind, how the person is doing, how the treatment is going. I feel really sad when I hear that someone died of cancer. Every day I hope this blog and me telling my story helps others.
I just want to be able to mother my children and take care of my husband and our home. That's what I'm really looking forward to in the coming weeks, months, years.
Anyway, I hope the day brought sunshine and good times for all the moms out there. Big hugs to both my moms, you are a help and inspiration to me all the time and I'm so glad you're both in my life.
It's also (hopefully) the last day I'll be wearing the wound vac. Of course it stinks more today than it ever has, blech. It's like the wound is taunting me with stink. I think not smelling like ass would be a very good thing. I'm still nervous about it, but it will be okay. And how nice would it be to pack and clean things and cook without dragging a wound vac around?
I'm trying to decide if I should have the chemo nurses run the Irinotecan and Leucovorin together or separately. I've had it both ways, and they both suck for different reasons. Running them together makes the day go faster, shaving off about an hour or more of time in the chemo lounge. The last time I did it though really kicked my ass. My legs were sore, I felt awful, I was exhausted. So do I spend a bunch of time at the chemo lounge? Or do I suck it up and get out of there fast? Most likely I'll do the latter. I still hate sitting around in the chemo lounge. Chemo makes me feel creepy crawly and like running away.
Is it just me, or do chemo drug names sound like dinosaur names?
I find myself wondering what will change once this is all over. Anything? Nothing? Have the changes happened already and if so, will they stick? In many ways I feel that I haven't changed at all. I still mock things and make wise cracky observations. I'm a goofy trashy music loving vegan sewing gardening fun time having mama just wanting life to be simple and easy. However, I now appreciate the ability to do laundry, to play with my kids, to drive my car. I feel fortunate that I'm able to take my kids to the park or read them a book. When I can load the dishwasher and make dinner, that's a damn good day. Not being able to do things like that makes me thankful for the future, when I can all the time, not just on off chemo weeks.
Someone please remind me of how thankful I am to be doing mundane household chores in a few months when I start bitching about it.
I think I feel more compassion for people who are dealing with cancer. My ears perk up when someone mentions cancer. I wonder what kind, how the person is doing, how the treatment is going. I feel really sad when I hear that someone died of cancer. Every day I hope this blog and me telling my story helps others.
I just want to be able to mother my children and take care of my husband and our home. That's what I'm really looking forward to in the coming weeks, months, years.
Anyway, I hope the day brought sunshine and good times for all the moms out there. Big hugs to both my moms, you are a help and inspiration to me all the time and I'm so glad you're both in my life.
Thursday, May 6, 2010
Changes!
I'm not good with change. Once we get in a groove, I'm reluctant to get out of it. This directly conflicts with me wanting to get rid of the wound vac, because that would be a HUGE change for me right now.
I just realized that Friday might be my last dressing change. On Monday we see the surgeon and it's likely that I'll at least take a two week break, if not just ditching it altogether. Is it weird that I'm a little freaked out by this? I don't like the wound vac, I don't like the time it sucks up three times a week to get it changed. I don't like not being able to shower every day. I don't like dragging the vac around. There are tons of things I dislike.
So what am I worried about? I'm worried about packing the wound twice a day. I'm worried about dealing with drainage (gross). I'm worried about changing up the routine. I'm worried about how the wound is going to continue healing, how to care for it. It's irrational. But there it is. It's one step closer to the normal, real world. And I feel like I haven't really been a part of the normal, real world in a long time. That's kind of scary.
I think I'm worried about expectations. Since I won't be doing chemo anymore and I won't have a wound vac anymore, what is going to be expected of me? I tend to expect a lot from myself, maybe sometimes too much. I think I'll have to be careful to know my limits and communicate those limits to friends and family. Being gentle with myself is important, and I need to give myself permission to do that.
I don't know if I'm ready to jump into Life Without Cancer. This has been such a long, hard road and I'm tired. It's like one day I'm doing treatment and then suddenly treatment will be done. I remember feeling weird about being done with radiation too. After going every day for so long, it was strange for it to be just over.
And what's going to happen to this blog? Do I keep it going but change the focus to just my everyday life? Do I start a new blog and just leave this one to the internets? This will take some thought. There will still be cancer related stuff in my life, what with scans and colonoscopies. I've been thinking about starting a vegan food blog or a Life in Columbus blog.
I feel better writing about my worries. Deep down, I think I know everything will be okay. One day at a time, right?
I just realized that Friday might be my last dressing change. On Monday we see the surgeon and it's likely that I'll at least take a two week break, if not just ditching it altogether. Is it weird that I'm a little freaked out by this? I don't like the wound vac, I don't like the time it sucks up three times a week to get it changed. I don't like not being able to shower every day. I don't like dragging the vac around. There are tons of things I dislike.
So what am I worried about? I'm worried about packing the wound twice a day. I'm worried about dealing with drainage (gross). I'm worried about changing up the routine. I'm worried about how the wound is going to continue healing, how to care for it. It's irrational. But there it is. It's one step closer to the normal, real world. And I feel like I haven't really been a part of the normal, real world in a long time. That's kind of scary.
I think I'm worried about expectations. Since I won't be doing chemo anymore and I won't have a wound vac anymore, what is going to be expected of me? I tend to expect a lot from myself, maybe sometimes too much. I think I'll have to be careful to know my limits and communicate those limits to friends and family. Being gentle with myself is important, and I need to give myself permission to do that.
I don't know if I'm ready to jump into Life Without Cancer. This has been such a long, hard road and I'm tired. It's like one day I'm doing treatment and then suddenly treatment will be done. I remember feeling weird about being done with radiation too. After going every day for so long, it was strange for it to be just over.
And what's going to happen to this blog? Do I keep it going but change the focus to just my everyday life? Do I start a new blog and just leave this one to the internets? This will take some thought. There will still be cancer related stuff in my life, what with scans and colonoscopies. I've been thinking about starting a vegan food blog or a Life in Columbus blog.
I feel better writing about my worries. Deep down, I think I know everything will be okay. One day at a time, right?
Wednesday, May 5, 2010
Happy Cinco de Mayo!!!
It's time to get your margaritas on!!! It's Wednesday, NOT a chemo week, the sun is shining, and you can have a shot of tequila mid-week if you so choose. Sounds like a pretty damn good day to me.
Drink one for me, stay safe, and good vibes to all.
Drink one for me, stay safe, and good vibes to all.
Sunday, May 2, 2010
Obligatory Chemo Sunday Whine
Chemo is booooooooooooo. Chemo Sunday makes me want to cry, but it hurts to cry so I'm trying not to do that. Yes, that's right, it physically hurts to cry. How's that for sucky? I wasn't overly surprised because I've read about others experiencing it. That does not make it fun. Sometimes I just feel like crying on Chemo Sunday, all right?
Actually, I'm feeling slightly better than I did this morning. The day has included eating food Eric puts in front of me and taking a nap in my bed. Now I'm counting the hours until bedtime so I can go lay in my bed some more.
Another annoying thing: my body cannot pick a temperature. I'm either shivering or way too hot. When I get hot, I get sweaty and therefore my ass wound stinks. Boooooooooo.
This is all going to be over soon. Many people remind me of this (thank you, people). What invariably is said right after the "It's almost over!" is "You'll be able to forget this ever happened!"
Wait a minute. Wait just a minute. I busted ass to get through radiation, chemo, surgery, more stupid chemo, an ASS WOUND that won't heal...and it's all just going to be forgotten? I don't want to dwell on it, of course, but to just dismiss it as if nothing happened? What the hell did I do all this fighting for if we're just going to sweep it under the rug? People assume I want to just leave it all behind. I don't. I want to remember how hard it was to get through this. I want to remember all the people who helped me, who said kind words, who thoughts good thoughts, who prayed. I want to share this story to hopefully help others. I want to give something back to the universe because I WAS able to fight.
There will be more about this someday. Right now I'm needed by my little guy. :)
Actually, I'm feeling slightly better than I did this morning. The day has included eating food Eric puts in front of me and taking a nap in my bed. Now I'm counting the hours until bedtime so I can go lay in my bed some more.
Another annoying thing: my body cannot pick a temperature. I'm either shivering or way too hot. When I get hot, I get sweaty and therefore my ass wound stinks. Boooooooooo.
This is all going to be over soon. Many people remind me of this (thank you, people). What invariably is said right after the "It's almost over!" is "You'll be able to forget this ever happened!"
Wait a minute. Wait just a minute. I busted ass to get through radiation, chemo, surgery, more stupid chemo, an ASS WOUND that won't heal...and it's all just going to be forgotten? I don't want to dwell on it, of course, but to just dismiss it as if nothing happened? What the hell did I do all this fighting for if we're just going to sweep it under the rug? People assume I want to just leave it all behind. I don't. I want to remember how hard it was to get through this. I want to remember all the people who helped me, who said kind words, who thoughts good thoughts, who prayed. I want to share this story to hopefully help others. I want to give something back to the universe because I WAS able to fight.
There will be more about this someday. Right now I'm needed by my little guy. :)
Saturday, May 1, 2010
Since you asked...
Did I ever mention that I'll totally take questions if you have them? Well, I will. I think the more information that gets out there, the better.
So, I had a reader ask about stool pancaking around the wafer. I hate it when that happens. When you have a colostomy, stool comes out pretty much the way it comes out of your ass. So you can run the gamet of different types of poop. Isn't that nice? Sometimes I get nuggets, sometimes the output is mashy. It depends a lot on the meds I'm taking (chemo, anti-nausea, and pain meds all cause my guts to slow way down, and I get nuggets) and what I'm eating (obviously my high fiber diet can make the output more mashy). The chemo can also cause mashy output, but I don't know if that's my issue or if it's diet.
Anyhoo, sometimes the output gets under the wafer and "pancakes" behind it. Gross. It seems that the better the wafer is stuck to the skin, the less this happens. As soon as silent leaking starts, it wrecks the seal between the wafer and the skin, and stuff can get under there. I haven't found a hard and fast solution to this. When it starts to bug me or threatens to escape the wafer, I change the whole shebang. I end up going through more wafers, but what can you do? I'm comfortable with how we're dealing right now and am not overly anxious to change things up. Luckily I don't tend to deal with pancaking a whole lot, it's usually a couple days on my off chemo weeks. I have no idea what will happen when things are more regular (ie I'm not having poison pumped into my body every other week). I think I'd probably try diet modifications first if it's an issue, more foods that slow things down.
So yeah, I wish I had a better solution. Right now my biggest struggle is getting my guts going again after chemo/IV iron/anti-nausea meds. I can't do prune juice anymore, I just can't get it down. I'm all about pear juice, eating dried prunes, and trying to keep up on the fiber. As long as I get gas coming out, I don't freak, but man, I hate it when my guts slow down. It's so uncomfortable when things don't work right.
Can I stick in a little "I hate chemo weekends" rant too? Awww, thanks! Because ugh. I had the typical Saturday crash this afternoon, and slept for probably three hours in my bed this afternoon. I feel like I missed out on a ton of stuff, like my little guy riding his new-to-him bike. It's disappointing. I'm counting down the time until I can crawl back into my bed for the night, and until Sunday is over.
I can do one more. I know I can. But man, I don't want to. Who wants to help me run away?
I'll focus on getting through the rest of the weekend. Eric is taking good care of me, and I get lots of gentle hugs from my babies. It will be okay.
So, I had a reader ask about stool pancaking around the wafer. I hate it when that happens. When you have a colostomy, stool comes out pretty much the way it comes out of your ass. So you can run the gamet of different types of poop. Isn't that nice? Sometimes I get nuggets, sometimes the output is mashy. It depends a lot on the meds I'm taking (chemo, anti-nausea, and pain meds all cause my guts to slow way down, and I get nuggets) and what I'm eating (obviously my high fiber diet can make the output more mashy). The chemo can also cause mashy output, but I don't know if that's my issue or if it's diet.
Anyhoo, sometimes the output gets under the wafer and "pancakes" behind it. Gross. It seems that the better the wafer is stuck to the skin, the less this happens. As soon as silent leaking starts, it wrecks the seal between the wafer and the skin, and stuff can get under there. I haven't found a hard and fast solution to this. When it starts to bug me or threatens to escape the wafer, I change the whole shebang. I end up going through more wafers, but what can you do? I'm comfortable with how we're dealing right now and am not overly anxious to change things up. Luckily I don't tend to deal with pancaking a whole lot, it's usually a couple days on my off chemo weeks. I have no idea what will happen when things are more regular (ie I'm not having poison pumped into my body every other week). I think I'd probably try diet modifications first if it's an issue, more foods that slow things down.
So yeah, I wish I had a better solution. Right now my biggest struggle is getting my guts going again after chemo/IV iron/anti-nausea meds. I can't do prune juice anymore, I just can't get it down. I'm all about pear juice, eating dried prunes, and trying to keep up on the fiber. As long as I get gas coming out, I don't freak, but man, I hate it when my guts slow down. It's so uncomfortable when things don't work right.
Can I stick in a little "I hate chemo weekends" rant too? Awww, thanks! Because ugh. I had the typical Saturday crash this afternoon, and slept for probably three hours in my bed this afternoon. I feel like I missed out on a ton of stuff, like my little guy riding his new-to-him bike. It's disappointing. I'm counting down the time until I can crawl back into my bed for the night, and until Sunday is over.
I can do one more. I know I can. But man, I don't want to. Who wants to help me run away?
I'll focus on getting through the rest of the weekend. Eric is taking good care of me, and I get lots of gentle hugs from my babies. It will be okay.
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