As I stand in the bathroom smoothing moisturizer onto my throat and face, I stare at myself. Only now instead of looking to see if there are any blemishes that need covering up today, or whether the dark circles under my eyes need it, there is only one thing that draws my gaze.
My head. My nearly bald head.
Look - I know it's part of the deal. In order to beat this stupid disease, I need treatment, and that treatment makes me bald. I accept that. But I don't have to like it. It's weird. ALL the changes that this disease and treating it have made to my body - they're all weird.
You may not realize this about me - but I'm vain. Always have been. Not conceited - I'm no Cindy Crawford by any means - but I was a cute girl, and a pretty young woman, not to mention a bit of a hot mama in my younger days. I took pride in how I looked. I may not have re-done my makeup 4 times a day in high school (and yes - might have made fun of those who did), but I made sure my hair and makeup looked good before I left the house for the day. And I did that every day. I was not the gal who ran to 7-11 without her makeup on. Ever. If you saw me out and about, I was wearing makeup. It might just be foundation and mascara, but it was there.
I can't wear mascara anymore - because I have no eyelashes. I can't fix my hair anymore because I have none. I wonder if perhaps God is teaching me a lesson somehow - that I took too much pride in how I looked before, and now I'm having to re-evaluate my image of myself. Even if that's not the case, it's what I'm doing these days. When I don't look in the mirror and see a little old man anyway.
I had hoped that I would have some kind of ethereal beauty even with my baldness - that somehow something would shine through the havoc cancer has wrecked on my body. Um. No. Didn't happen. It's hard to look ethereal with a sparse gray fringe and no eyebrows. This is why I wear scarves and don't rock the bald look. I try to smile more - smiles always make you look better. But it really does bother me that I have no eyelashes.
Why am I sharing that I'm a vain ex-hottie? Not to get comments that I still look good, or anything like that. Really. Rather I'd like that someone with this stupid disease to find this and realize that cancer really does change more than just your body. It changes your attitude - and how you view yourself. Once upon a time when asked to describe myself, I would say "kinda cute, mousy brown hair, nice brown eyes." Now I'm "the chick with the scarf on her head." That's it.
Man what I wouldn't do to have that "mousy" brown hair again. I wonder if I'll ever be able to just accept that I'll never be that woman again. Will I be able to accept this new look? This disease and its treatment has aged me - it really has. I spent most my life looking somewhat younger than my age. Now I look much older. As I look towards my birthday tomorrow - where I'll turn 48 - I look in the mirror and see a woman who looks older - in her 50's maybe. But that's not really such a bad thing is it? Isn't 50 the new 40? If not, I'm making it so!
Don't get me wrong, I'm so grateful to be having another birthday tomorrow. There were a few days last October when I wasn't so sure that would be the case. And now - oddly enough- I'm looking forward to turning 50. Before I got sick, I was kinda dreading it. Now I know - it's way better than the alternative! Yet I'm trying to be brutally transparent on this blog - because I think it's important for people to know what cancer does to you. How it changes you - not just physically, but emotionally as well. I'm lucky that it's not making me bitter (much). I hope it never does. But I am not the same woman I was 7 months ago.
Not hardly. Maybe that's not such a bad thing.
Ramblings of a mom and wife that just moved from a little city to a teeny town, and is currently in the process of battling ovarian cancer.
Friday, April 26, 2013
Tuesday, April 23, 2013
Stronger
Well - hello!
Sorry for the break in posts - last week was one of our busier weeks at work, and to be honest, I overdid it. I'm still learning my limits in this new normal. I don't have the stamina or endurance that I used to, so going to an event the day after chemo pushed me to the limit.
You try to plan for that - I made a point of taking the morning after chemo off from work, so that I would have enough energy to attend our departmental banquet. But the banquet lasted until 9:30, and in the spirit of complete transparency - I'm usually getting ready for bed at 9 pm. So not getting home until 10:00 pm had me pretty tired. Then attending our advisory board meetings all the next day finished the job. You wouldn't think that sitting and taking notes would wear a girl out..but it did.
After a weekend of taking it easy, I'm slowly bouncing back. But I'm at home today after a rough night. It is so frustrating to someone like me - I'm the type that rarely misses work. It was a blessing in disguise when I was originally diagnosed because I had so much sick leave and vacation leave saved up. Not many people can take off for nearly 4 months without a dock in pay. Yet when I have to take off now to take care of myself - to let myself recover from a night of throwing up, or just to recover my energy, it pisses me off. I should be at work. I keep thinking that my co-workers MUST be tired of me being gone all the time, and having to pick up my slack. I hate letting them down. I hate letting my boss down. She's been amazingly supportive through all this - but I worry that eventually she'll get tired of being so supportive.
I hate feeling weak.
And isn't that the heart of the matter? This stupid disease has weakened me physically - and I HATE that. I know it's normal. That doesn't make me hate it any less. I was so strong before - physically, mentally, emotionally - and it's made a dent in that. Hate it, hate it, hate it. I try to make peace with it, to accept this new normal, but I have a very hard time doing it. I want my old normal back. I want to be able to get up at 5:30 am to work out every day, to not miss work, to be able to work in the garden, to can this asparagus that is filling up my fridge, to cook for my family every night, to keep up with the laundry, and to clean this house.
I can't. I don't like it, and I rail against it, but I can't. Every day I'm able to do a little more, but it's going to take some time before I'm back to the old Mysti. But I'm not giving up on getting back to that place. Someday, I'll be able to do those workouts. I'll be able to work several months in a row without having to call in sick. I'll be able to shampoo my carpets, move furniture around, and weed and mulch my garden.
Someday, I'll be strong again.
Until then, I do what I can. I bitch and moan on my blog. I listen to my husband when he tells me that maybe it would be smarter to stay home a day and recover, than go to work and then get weaker from overdoing it and have to stay home several days (or worse, end up in the hospital again.). And day by day, I refuse to give up - and do whatever I can to get my strength back. To find my new normal - one that I can be content with.
Because this weak ass stuff ain't gonna cut it.
Sorry for the break in posts - last week was one of our busier weeks at work, and to be honest, I overdid it. I'm still learning my limits in this new normal. I don't have the stamina or endurance that I used to, so going to an event the day after chemo pushed me to the limit.
You try to plan for that - I made a point of taking the morning after chemo off from work, so that I would have enough energy to attend our departmental banquet. But the banquet lasted until 9:30, and in the spirit of complete transparency - I'm usually getting ready for bed at 9 pm. So not getting home until 10:00 pm had me pretty tired. Then attending our advisory board meetings all the next day finished the job. You wouldn't think that sitting and taking notes would wear a girl out..but it did.
After a weekend of taking it easy, I'm slowly bouncing back. But I'm at home today after a rough night. It is so frustrating to someone like me - I'm the type that rarely misses work. It was a blessing in disguise when I was originally diagnosed because I had so much sick leave and vacation leave saved up. Not many people can take off for nearly 4 months without a dock in pay. Yet when I have to take off now to take care of myself - to let myself recover from a night of throwing up, or just to recover my energy, it pisses me off. I should be at work. I keep thinking that my co-workers MUST be tired of me being gone all the time, and having to pick up my slack. I hate letting them down. I hate letting my boss down. She's been amazingly supportive through all this - but I worry that eventually she'll get tired of being so supportive.
I hate feeling weak.
And isn't that the heart of the matter? This stupid disease has weakened me physically - and I HATE that. I know it's normal. That doesn't make me hate it any less. I was so strong before - physically, mentally, emotionally - and it's made a dent in that. Hate it, hate it, hate it. I try to make peace with it, to accept this new normal, but I have a very hard time doing it. I want my old normal back. I want to be able to get up at 5:30 am to work out every day, to not miss work, to be able to work in the garden, to can this asparagus that is filling up my fridge, to cook for my family every night, to keep up with the laundry, and to clean this house.
I can't. I don't like it, and I rail against it, but I can't. Every day I'm able to do a little more, but it's going to take some time before I'm back to the old Mysti. But I'm not giving up on getting back to that place. Someday, I'll be able to do those workouts. I'll be able to work several months in a row without having to call in sick. I'll be able to shampoo my carpets, move furniture around, and weed and mulch my garden.
Someday, I'll be strong again.
Until then, I do what I can. I bitch and moan on my blog. I listen to my husband when he tells me that maybe it would be smarter to stay home a day and recover, than go to work and then get weaker from overdoing it and have to stay home several days (or worse, end up in the hospital again.). And day by day, I refuse to give up - and do whatever I can to get my strength back. To find my new normal - one that I can be content with.
Because this weak ass stuff ain't gonna cut it.
Wednesday, April 17, 2013
A Visit to Chemo Day
I've been here since 8:20 this morning. It is now 2:30 p.m. I expect to be here another hour. Welcome to chemo.
I'm currently in the "boat" room. They have 3 chemo rooms at our local cancer center. One is decorated in boats, one exotic animals ( Keri would love that one!) and one has landscapes - mostly mountains. In each room, there are several recliners that don't recline much unless you're a big man or very strong. I am neither. At least I can put my feet up. Between the sorta recliners are semi-comfortable chairs for each patient's caretaker or support person. I also have a TV that swings out that gets local channels. We don't want cancer patients to miss The Chew ya know.
The nurses are wonderful. They keep us supplied with heated blankets, drinks, and IVs. They hook us up and unhook us so we can go pee, and do whatever they can to make our stay as pleasant as possible. Normally it's pretty uneventful, but some poor man got sick today. Once again, I'm grateful for the regimen I'm on and the anti-nausea drugs they give me.
In the bathroom, there is a print of a painting of several girls in roaring twenties bathing suits. All the dark-headed girls look like the girl I like to call my daughter from another mother. I don't have daughters. I used to mourn that. Since my diagnosis, not so much. My best friend has two. Sometimes she loans me one. True - it's the challenging one. But I adore her anyway, and seeing several versions of her always comforts me a bit.
The drugs that are saving my life are given to me via IV. The sound of the IV pump is the soundtrack of chemo day. That includes the "bee-doop" of a finished bag. Before we get to the hard stuff, I get appetizers of saline, Zofran, Benedryl, Pepcid, and my favorite - Emend. These prepare me for the chemo. The Benedryl makes me sleepy, so I often sleep through part of my chemo. It seems pretty typical, this sleeping through treatment.
I'm given two chemo drugs. That's what is the standard treatment for my ovarian cancer. It takes three hours for the first one, half an hour for the second one. It might take up my whole day with labs and doctor appointments added in, but it's working. I'm getting better. I'm stronger. I know how to pace myself better so I can do a few things before the fatigue sets in. And it does set in. About 3 hours after I'm done.
I know I'm lucky. Chemo can be hell. But if you go into it with a fighting attitude, and prepared for the side effects, maybe it helps. Maybe if you don't let the fear of chemo take over, you won't have as much to fear.
Works for me.
I'm currently in the "boat" room. They have 3 chemo rooms at our local cancer center. One is decorated in boats, one exotic animals ( Keri would love that one!) and one has landscapes - mostly mountains. In each room, there are several recliners that don't recline much unless you're a big man or very strong. I am neither. At least I can put my feet up. Between the sorta recliners are semi-comfortable chairs for each patient's caretaker or support person. I also have a TV that swings out that gets local channels. We don't want cancer patients to miss The Chew ya know.
The nurses are wonderful. They keep us supplied with heated blankets, drinks, and IVs. They hook us up and unhook us so we can go pee, and do whatever they can to make our stay as pleasant as possible. Normally it's pretty uneventful, but some poor man got sick today. Once again, I'm grateful for the regimen I'm on and the anti-nausea drugs they give me.
In the bathroom, there is a print of a painting of several girls in roaring twenties bathing suits. All the dark-headed girls look like the girl I like to call my daughter from another mother. I don't have daughters. I used to mourn that. Since my diagnosis, not so much. My best friend has two. Sometimes she loans me one. True - it's the challenging one. But I adore her anyway, and seeing several versions of her always comforts me a bit.
The drugs that are saving my life are given to me via IV. The sound of the IV pump is the soundtrack of chemo day. That includes the "bee-doop" of a finished bag. Before we get to the hard stuff, I get appetizers of saline, Zofran, Benedryl, Pepcid, and my favorite - Emend. These prepare me for the chemo. The Benedryl makes me sleepy, so I often sleep through part of my chemo. It seems pretty typical, this sleeping through treatment.
I'm given two chemo drugs. That's what is the standard treatment for my ovarian cancer. It takes three hours for the first one, half an hour for the second one. It might take up my whole day with labs and doctor appointments added in, but it's working. I'm getting better. I'm stronger. I know how to pace myself better so I can do a few things before the fatigue sets in. And it does set in. About 3 hours after I'm done.
I know I'm lucky. Chemo can be hell. But if you go into it with a fighting attitude, and prepared for the side effects, maybe it helps. Maybe if you don't let the fear of chemo take over, you won't have as much to fear.
Works for me.
Monday, April 15, 2013
The New Normal
Before I got sick, I spent most weekends by getting up around 8:00 am, eating breakfast, getting dressed, and working in the garden. I would do that until lunch time, then come in, eat, shower and then do fun stuff (or laundry). I would weed, or mulch, or plant, or harvest, or water, or just do whatever was needed to keep our garden growing. Last year was the year I tried mulching parts of our garden with hay our cow had been sleeping on. I cannot tell you how many mornings I got up to drive my son's pickup down by where the hay way, used a pitchfork to load the bed of the truck up, and drive it over to the garden to mulch with. It was great exercise, and as someone who loves to garden, it was very satisfying. It also made a huge difference in not only how often we had to water during the 2nd year of a drought, but also in how many onions and potatoes we harvested and how few weeds I had to pull.
This year, it's different. I don't have the strength that I did last year, nor the endurance. I have to be sure to wear protective gear because my skin is sensitive to the sun thanks to chemo. But by golly, Sunday afternoon after church, my family and I were out there in the garden, planting onions, and I was raking up hay that I didn't get spread out last year and using it to cover soaker hoses and around baby onions. I felt...almost normal.
A few days ago I canned asparagus. We have a bed that now in it's 5th year, produces more asparagus than even we can eat. So I started canning again. And yes - it made me feel almost normal again. I pray that we'll grow enough tomatoes this year so that I can make more hot sauce becuase I'm down to just a case of pints.
Saturday I cleaned our guest bath. I'm pretty sure that the sink and counter in there hadn't been washed since I came home from the hospital the first time. I only know it was done then because my husband told me he hired someone to come clean the house before I came home (and thanks so much LeeAnn, for helping him to find someone to do that!).
That was in November. It was a very icky sink. The mirror wasn't a whole lot better. I won't discuss the toilet. Luckily my darling hubby took care of that for me. Boys are icky.
I am now officially the laundry person again. For the hubs and I. I'm still a firm believer that teenagers can do their own laundry, unless I need more white socks so I have a full load to wash. But if my husband is wearing clean clothes, it's because I wash, dried, then put them away.
Doing laundry, working in the garden, canning vegetables, cleaning bathrooms. These are things that so many look on as chores, griping about having to do it every week, or how ever often they normally do these things. But for me - or maybe even anyone battling cancer and regaining their strength - every chore they can do feels more like normal. More like life before it was shattered by their diagnosis. Nowadays, even vacuuming isn't seen as such a horrible thing - because I wasn't allowed to do it for months, and now I can.
It ain't glamorous. But I'm grateful for every chore I can do. For every step closer to my new normal.
Did I mention that after having to take care of all the housework and laundry for 4 or 5 months, the hubs *really* appreciates all that I do now? And that's awesome.
So - next time you have an icky sink to clean, think a second before you gripe about having to clean it. Be grateful for the strong, healthy body you have and it's abilty to clean that sink.
Then for heaven's sake, make your teenagers clean it for you. They need to earn gas money anyway!
This year, it's different. I don't have the strength that I did last year, nor the endurance. I have to be sure to wear protective gear because my skin is sensitive to the sun thanks to chemo. But by golly, Sunday afternoon after church, my family and I were out there in the garden, planting onions, and I was raking up hay that I didn't get spread out last year and using it to cover soaker hoses and around baby onions. I felt...almost normal.
A few days ago I canned asparagus. We have a bed that now in it's 5th year, produces more asparagus than even we can eat. So I started canning again. And yes - it made me feel almost normal again. I pray that we'll grow enough tomatoes this year so that I can make more hot sauce becuase I'm down to just a case of pints.
Saturday I cleaned our guest bath. I'm pretty sure that the sink and counter in there hadn't been washed since I came home from the hospital the first time. I only know it was done then because my husband told me he hired someone to come clean the house before I came home (and thanks so much LeeAnn, for helping him to find someone to do that!).
That was in November. It was a very icky sink. The mirror wasn't a whole lot better. I won't discuss the toilet. Luckily my darling hubby took care of that for me. Boys are icky.
I am now officially the laundry person again. For the hubs and I. I'm still a firm believer that teenagers can do their own laundry, unless I need more white socks so I have a full load to wash. But if my husband is wearing clean clothes, it's because I wash, dried, then put them away.
Doing laundry, working in the garden, canning vegetables, cleaning bathrooms. These are things that so many look on as chores, griping about having to do it every week, or how ever often they normally do these things. But for me - or maybe even anyone battling cancer and regaining their strength - every chore they can do feels more like normal. More like life before it was shattered by their diagnosis. Nowadays, even vacuuming isn't seen as such a horrible thing - because I wasn't allowed to do it for months, and now I can.
It ain't glamorous. But I'm grateful for every chore I can do. For every step closer to my new normal.
Did I mention that after having to take care of all the housework and laundry for 4 or 5 months, the hubs *really* appreciates all that I do now? And that's awesome.
So - next time you have an icky sink to clean, think a second before you gripe about having to clean it. Be grateful for the strong, healthy body you have and it's abilty to clean that sink.
Then for heaven's sake, make your teenagers clean it for you. They need to earn gas money anyway!
Friday, April 12, 2013
Definitions
I've sat here for the last 20 minutes trying to think of a topic to blog about. The response since I started blogging about my battle has been tremendous, and I can't help but think that's what everyone wants to read about. But do I really want to be the chick who only blogs about ovarian cancer?
The thing is, once you get cancer, your disease defines you. I'll never again be just Mysti, or just J's mom or E's mom. No, from now on I'll be "you know - Mysti - the one who had ovarian cancer?" I'm not sure I like that. I feel like I'm so much more than that. There's so much more to who I am.
I'm the chick who loves hockey - who had season tickets to our local minor league team when we had one. I was the booster club president for two years. Some of my best friends are the folks I met through hockey, and some of the best times I've had were related to hockey - at games, at parties, out with the team with other fans. It's an amazing sport - and I miss it every day.
I took figure skating lessons for 3 years while we had that team. Learning how to do a waltz jump was one of the coolest things I've ever done. Even though it's considered a half jump - it's like flying. So. Amazing.
I used to write a column for a soap website. Commentary about General Hospital, or One Life To Live. Once even about All My Children. It was so much fun, but once I got sick, I knew I couldn't keep up with it, so I'm on hiatus. Maybe someday I'll be up to writing for that site again.
My kids are so awesome. They might not fit the "popular" mold, but they are both thinkers. They both follow the beat of their own drum. They are as different as night and day, but they both make me proud in so many ways. They are witty and smart and smart asses. I adore them. (and now both of them are so very embarassed. pfft. My blog - I can write what I want!)
My husband is amazing. He has been my rock through all of this mess. Everyone things I'm so strong, and that I'm handling this so well. Only my husband has seen me when I was at my weakest and most afraid. He's the only one, except for my folks on a couple of occasions, that I would let my guard down completely in front of. And every single time, he lifted me up, encouraged me, and kept me strong. He seems to gruff to most people who meet him...gruff and a bit of an asshole. But he's not. I'm so proud to be his wife. (And now he's annoyed with me. HA!)
I'm the chick who figure skates, reads way too much, loves to garden, cans everything she can, and spends way too much time on Facebook. Not just the chick who has cancer. Because I refuse to let my disease define me.
Even if it has wrecked havoc with my body. Oy.
But that's a whole 'other post!
(So tell me - what defines you? Show me some comment love!)
The thing is, once you get cancer, your disease defines you. I'll never again be just Mysti, or just J's mom or E's mom. No, from now on I'll be "you know - Mysti - the one who had ovarian cancer?" I'm not sure I like that. I feel like I'm so much more than that. There's so much more to who I am.
I'm the chick who loves hockey - who had season tickets to our local minor league team when we had one. I was the booster club president for two years. Some of my best friends are the folks I met through hockey, and some of the best times I've had were related to hockey - at games, at parties, out with the team with other fans. It's an amazing sport - and I miss it every day.
I took figure skating lessons for 3 years while we had that team. Learning how to do a waltz jump was one of the coolest things I've ever done. Even though it's considered a half jump - it's like flying. So. Amazing.
I used to write a column for a soap website. Commentary about General Hospital, or One Life To Live. Once even about All My Children. It was so much fun, but once I got sick, I knew I couldn't keep up with it, so I'm on hiatus. Maybe someday I'll be up to writing for that site again.
My kids are so awesome. They might not fit the "popular" mold, but they are both thinkers. They both follow the beat of their own drum. They are as different as night and day, but they both make me proud in so many ways. They are witty and smart and smart asses. I adore them. (and now both of them are so very embarassed. pfft. My blog - I can write what I want!)
My husband is amazing. He has been my rock through all of this mess. Everyone things I'm so strong, and that I'm handling this so well. Only my husband has seen me when I was at my weakest and most afraid. He's the only one, except for my folks on a couple of occasions, that I would let my guard down completely in front of. And every single time, he lifted me up, encouraged me, and kept me strong. He seems to gruff to most people who meet him...gruff and a bit of an asshole. But he's not. I'm so proud to be his wife. (And now he's annoyed with me. HA!)
I'm the chick who figure skates, reads way too much, loves to garden, cans everything she can, and spends way too much time on Facebook. Not just the chick who has cancer. Because I refuse to let my disease define me.
Even if it has wrecked havoc with my body. Oy.
But that's a whole 'other post!
(So tell me - what defines you? Show me some comment love!)
Wednesday, April 10, 2013
Great Expectations
Expectations. We all have them. We expect things to go a certain way, for our kids to accomplish certain things....
To have chemo when it's scheduled.
*sigh*
I was supposed to have my 6th round of chemo today. Unfortunately, my platelets were too low, so the doc postponed it for a week. I wasn't too surprised - I have been bruising way too easily this week, so I figured my platelets were low. Ask any cancer survivor or patient - we learn to roll with the punches pretty quickly. I just went and grabbed lunch, then went to work. No big deal.
I made the mistake of looking at survival rates for ovarian cancer again the other day. When I first looked it up, I was pretty sure that I'd be Stage 3 - back then, no one told me what stage my cancer was in. And survival rate for 5 years for Stage 3 patients is 30%. Not a great rate to be sure, but shoot, my mom-in-law had a 35% chance of survival for her Stage 4 non-Hodgkin's lymphoma, and she's been in complete remission for a few years now. 30% was totally doable.
Do you know what the survival rate for Stage 4 ovarian cancer is? 18%. Yeah. That was quite a punch. I quietly freaked out over that number for several days. 18%? Holy cow - that's hardly anyone! Should I start deciding who gets my cool stuff? My darling hubby could probably care less about my beloved vintage candy dishes, blue glass vases and baskets that were my grandmothers, and vintage hats. I'm pretty sure my boys don't care either. But I don't want them thrown away - that stuff is awesome! Should I start a will? Prepare a living directive? Plan my funeral? Put little tags on the bottom of everything that says "This goes to De Lyn. I don't care if she doesn't have room for more crap. Give it to her anyway."
And then a still small voice spoke in my heart. That voice said "somebody has to make up that 18%. Why not you? You have the right things going for you - under 50 when diagnosed, pretty darn healthy except for the cancer thing, good attitude, responding well to chemo, tons of sweet people praying for you, stubborn as a mule..."
(Funny thing about that still small voice - I'm pretty sure it's the voice of my heavenly Father, and he knows me better than anyone. Including that whole stubborn thing)
Suddenly, I wasn't really freaking out anymore. Sure, I think my chances of living to be 93 like my Granpa are pretty slim, but I bet I make it another 5 years. Heck, I think the chances are pretty good to make it another 20 years. Because they are coming up with new treatments all the time, and doing more and more research on ovarian cancer and who knows? They could come up with a cure in the next few years. And I intend on being around for that cure. So there, panic attack. Take a hike.
Another expectation? My youngest had his district/area track meet today for discus. I expected him to do ok. He placed 2nd in District and 4th in Area. Woohoo!!! He gets to go to Regionals. We're so tickled for him. I'm especially tickled that I didn't miss his last meet after all! Heh.
Now my family expects me to cook supper for them tonight, since I don't have the whole "I'm tired from chemo" excuse, so I'm off to take care of that. And damn happy to do it.
To have chemo when it's scheduled.
*sigh*
I was supposed to have my 6th round of chemo today. Unfortunately, my platelets were too low, so the doc postponed it for a week. I wasn't too surprised - I have been bruising way too easily this week, so I figured my platelets were low. Ask any cancer survivor or patient - we learn to roll with the punches pretty quickly. I just went and grabbed lunch, then went to work. No big deal.
I made the mistake of looking at survival rates for ovarian cancer again the other day. When I first looked it up, I was pretty sure that I'd be Stage 3 - back then, no one told me what stage my cancer was in. And survival rate for 5 years for Stage 3 patients is 30%. Not a great rate to be sure, but shoot, my mom-in-law had a 35% chance of survival for her Stage 4 non-Hodgkin's lymphoma, and she's been in complete remission for a few years now. 30% was totally doable.
Do you know what the survival rate for Stage 4 ovarian cancer is? 18%. Yeah. That was quite a punch. I quietly freaked out over that number for several days. 18%? Holy cow - that's hardly anyone! Should I start deciding who gets my cool stuff? My darling hubby could probably care less about my beloved vintage candy dishes, blue glass vases and baskets that were my grandmothers, and vintage hats. I'm pretty sure my boys don't care either. But I don't want them thrown away - that stuff is awesome! Should I start a will? Prepare a living directive? Plan my funeral? Put little tags on the bottom of everything that says "This goes to De Lyn. I don't care if she doesn't have room for more crap. Give it to her anyway."
And then a still small voice spoke in my heart. That voice said "somebody has to make up that 18%. Why not you? You have the right things going for you - under 50 when diagnosed, pretty darn healthy except for the cancer thing, good attitude, responding well to chemo, tons of sweet people praying for you, stubborn as a mule..."
(Funny thing about that still small voice - I'm pretty sure it's the voice of my heavenly Father, and he knows me better than anyone. Including that whole stubborn thing)
Suddenly, I wasn't really freaking out anymore. Sure, I think my chances of living to be 93 like my Granpa are pretty slim, but I bet I make it another 5 years. Heck, I think the chances are pretty good to make it another 20 years. Because they are coming up with new treatments all the time, and doing more and more research on ovarian cancer and who knows? They could come up with a cure in the next few years. And I intend on being around for that cure. So there, panic attack. Take a hike.
Another expectation? My youngest had his district/area track meet today for discus. I expected him to do ok. He placed 2nd in District and 4th in Area. Woohoo!!! He gets to go to Regionals. We're so tickled for him. I'm especially tickled that I didn't miss his last meet after all! Heh.
Now my family expects me to cook supper for them tonight, since I don't have the whole "I'm tired from chemo" excuse, so I'm off to take care of that. And damn happy to do it.
Monday, April 08, 2013
Mmmm Mmmm Good
Today for lunch for lunch, I had glazed ham, peas, corn and green beans. That might seem unremarkable to most people, but for those of us who are battling cancer, or know someone who has (or is) battling cancer, they understand just how awesome that is.
Before my surgery, as I was undergoing tests to figure out what was wrong with me (even though I knew. Believe me...I knew, I was just waiting for confirmation), I had so much fluid build up in my abdomen that it not only made it difficult for me to breathe, but it compressed my stomach so much I couldn't eat or drink much. Add to that the fact that after my surgery I was so nauseated I couldn't eat much, then having an NG tube in to help with the copious vomiting I had....it was no wonder that a month after my surgery, I still couldn't eat but a few bites at a time. Then I had my first chemo....*sigh*.
I lost weight. A lot of weight. They put me on TPN the first time because I was losing so much weight, and was getting malnourished. So I spent the next 3 months focusing on food. The cancer treatment educators encourage you to eat a few bites every hour while going through chemotherapy. And I tried to do that...but it was hard. When everything you eat or drink doesn't taste good, it's hard to eat something every hour. I did my best to choke down a tablespoon of peanut butter, or half a banana, but most everything grossed me out. My beloved Coke - the same icy cold drink that I literally dreamed about while that stupid NG tube was down my nose and throat - tasted weird. Iced tea, my second favorite drink, was too bitter for me to tolerate. I could drink apple juice, but only if it was ice cold, and even that got old after awhile. In desperation I turned to Facebook - hoping someone had an idea of what I could drink. Gatorade - of all things - was one of the most recommended and I learned I could tolerate that. But food - that was a struggle.
You know how I mentioned all those people who brought my family meals and food while I was recovering? Most of that I couldn't eat. They could bring my favorite food, but it was all gross to my tastebuds. I'll never forget how I nearly started crying when I realized that the pot roast and veggies that my sweet friend Tabbi brought me tasted too spicy and I couldn't tolerate it. I love pot roast. I had been looking forward to that pot roast - then I couldn't eat it. My family loved it. But me...I was pretty much living on Ensure those days.
That sucked.
My husband, bless his heart, was so worried about me that he was constantly hounding me to eat. Anything I mentioned that sounded even sorta tasty, he went and bought. I ate nothing but Kraft Mac & Cheese for a week. He bought enough for a month. I mentioned that Nacho Cheese Doritos sounded good - he brought home a huge bag. I ate a little...but a single box of Mac & Cheese lasted me 3 or 4 days.
I remember when I first started being able to tolerate regular food again. Someone had brought us a BBQ'd brisket - and for the first time, a meat didn't gag me. My mom made us chicken spaghetti, and *that* tasted ok. I tried a cherry limeade, and suddenly there was something different for me to drink. Then sweet tea became tolerable...and day by day, I added new foods to my diet. And day by day...my stomach finally stretched back out to where I could eat a full meal. When I started adding regular food, I could eat one taco. Then it built up to a taco and some rice. Then two tacos. You'll be happy to know that last week I had 3 tacos, a double order of rice, AND a tortilla.
It wasn't all at once. I had to try pizza no less than 3 times before the magic 4th time where I could finally eat it. It took months before I could drink Coke again. I couldn't eat Thanksgiving dinner, or Christmas dinner. But by golly - I ate the heck out of Easter dinner! And it was awesome.
I've lost a bit of weight since I came off the TPN the last time. But that's ok - it's not a ton, and I'm still a bit heavy for my height. I'm not worried about it. I'm just grateful for every bite of food I can enjoy. I hope y'all don't take your ability to eat whatever you want for granted. Believe me - it's a blessing. I love all types of food - and I'm so grateful I can get back to enjoying it. The only one of my favorite foods that I haven't tried yet is a steak. But it's coming. One day soon I'm going to drag my hubs out to my favorite steakhouse, and have me a steak and baked potato, french onion soup with blueberry muffins for desert. And I'll say thanks over every bite.
And if you're out there going through chemotherapy, and wondering if you'll ever be able to eat normally again - yes. Yes you will. It will take time. And some foods you'll have to try again and again. But eventually one day, you'll try that pizza - and not gag. Or not think it's too spicy to eat. You'll just think Oh My Hell this tastes good! Then you'll eat a slice or two, and say a prayer of thanks - and know that getting back to normal - or at least your new normal - is just around the corner.
Before my surgery, as I was undergoing tests to figure out what was wrong with me (even though I knew. Believe me...I knew, I was just waiting for confirmation), I had so much fluid build up in my abdomen that it not only made it difficult for me to breathe, but it compressed my stomach so much I couldn't eat or drink much. Add to that the fact that after my surgery I was so nauseated I couldn't eat much, then having an NG tube in to help with the copious vomiting I had....it was no wonder that a month after my surgery, I still couldn't eat but a few bites at a time. Then I had my first chemo....*sigh*.
I lost weight. A lot of weight. They put me on TPN the first time because I was losing so much weight, and was getting malnourished. So I spent the next 3 months focusing on food. The cancer treatment educators encourage you to eat a few bites every hour while going through chemotherapy. And I tried to do that...but it was hard. When everything you eat or drink doesn't taste good, it's hard to eat something every hour. I did my best to choke down a tablespoon of peanut butter, or half a banana, but most everything grossed me out. My beloved Coke - the same icy cold drink that I literally dreamed about while that stupid NG tube was down my nose and throat - tasted weird. Iced tea, my second favorite drink, was too bitter for me to tolerate. I could drink apple juice, but only if it was ice cold, and even that got old after awhile. In desperation I turned to Facebook - hoping someone had an idea of what I could drink. Gatorade - of all things - was one of the most recommended and I learned I could tolerate that. But food - that was a struggle.
You know how I mentioned all those people who brought my family meals and food while I was recovering? Most of that I couldn't eat. They could bring my favorite food, but it was all gross to my tastebuds. I'll never forget how I nearly started crying when I realized that the pot roast and veggies that my sweet friend Tabbi brought me tasted too spicy and I couldn't tolerate it. I love pot roast. I had been looking forward to that pot roast - then I couldn't eat it. My family loved it. But me...I was pretty much living on Ensure those days.
That sucked.
My husband, bless his heart, was so worried about me that he was constantly hounding me to eat. Anything I mentioned that sounded even sorta tasty, he went and bought. I ate nothing but Kraft Mac & Cheese for a week. He bought enough for a month. I mentioned that Nacho Cheese Doritos sounded good - he brought home a huge bag. I ate a little...but a single box of Mac & Cheese lasted me 3 or 4 days.
I remember when I first started being able to tolerate regular food again. Someone had brought us a BBQ'd brisket - and for the first time, a meat didn't gag me. My mom made us chicken spaghetti, and *that* tasted ok. I tried a cherry limeade, and suddenly there was something different for me to drink. Then sweet tea became tolerable...and day by day, I added new foods to my diet. And day by day...my stomach finally stretched back out to where I could eat a full meal. When I started adding regular food, I could eat one taco. Then it built up to a taco and some rice. Then two tacos. You'll be happy to know that last week I had 3 tacos, a double order of rice, AND a tortilla.
It wasn't all at once. I had to try pizza no less than 3 times before the magic 4th time where I could finally eat it. It took months before I could drink Coke again. I couldn't eat Thanksgiving dinner, or Christmas dinner. But by golly - I ate the heck out of Easter dinner! And it was awesome.
I've lost a bit of weight since I came off the TPN the last time. But that's ok - it's not a ton, and I'm still a bit heavy for my height. I'm not worried about it. I'm just grateful for every bite of food I can enjoy. I hope y'all don't take your ability to eat whatever you want for granted. Believe me - it's a blessing. I love all types of food - and I'm so grateful I can get back to enjoying it. The only one of my favorite foods that I haven't tried yet is a steak. But it's coming. One day soon I'm going to drag my hubs out to my favorite steakhouse, and have me a steak and baked potato, french onion soup with blueberry muffins for desert. And I'll say thanks over every bite.
And if you're out there going through chemotherapy, and wondering if you'll ever be able to eat normally again - yes. Yes you will. It will take time. And some foods you'll have to try again and again. But eventually one day, you'll try that pizza - and not gag. Or not think it's too spicy to eat. You'll just think Oh My Hell this tastes good! Then you'll eat a slice or two, and say a prayer of thanks - and know that getting back to normal - or at least your new normal - is just around the corner.
Friday, April 05, 2013
Silent but Deadly
One of the things you do when you receive a Stage IV diagnosis is second guess yourself. You constantly try to think if you missed a symptom, a sign, something, ANYthing that if you had paid more attention to it, you might have been diagnosed sooner. Ovarian cancer is particularly insidious in that the symptoms could be anything...bloating? Shoot - what woman hasn't bloated on a regular basis since the onset of puberty? Constipation? Really? A sense of fullness? Changes in your cycle?
These are not the things that worry a woman - we don't have time to let a little bloating or irregular bowel habits slow us down. And often ovarian cancer hits in our later years - when changes in our cycle and weight gain that doesn't respond well to exercise is part of the change coming on. And again - while we don't *like* it, if you're over 45, you just assume it's the change. It never occurred to me that it might be ovarian cancer until it was too late.
Over the year before my diagnosis, I had a vague sense that my cycles were coming a little too close together. But I had just had my IUD removed, and figured that was why. I had gained weight, and it wasn't until I had been exercising regularly for 9 months without losing any before I started to think it might be something worrisome. 9 months folks. And honestly, it wasn't until I started gaining weight that I took it seriously. That and the fact I was getting short of breath going up stairs at work, even though I had quit smoking a year before. And let's not forget - my grandmother died from this disease - in her early 50s. One of her sisters had it as well when she was much older. I had a family history. Yet it took unexplained weight gain and shortness of breath to get me to a doctor.
I was 47 years old. That's actually considered a bit young for ovarian cancer. How long would I have waited to go to the doctor if I were 50? Or 55? or 60?
There is no way to accurately screen for ovarian cancer currently. For my diagnosis, it took a transvaginal ultrasound, an elevated CA-125 test of 220, and running a biopsy on the fluid they drained from my abdomen as it built up. But you don't want to get to the stage where fluid is building up in your abdomen before being diagnosed. You want to catch it before it gets to that point, and they are still looking for ways to do that. The CA-125 has not been shown to be a reliable indicator of the presence of ovarian cancer, and transvaginal ultrasounds can see some irregularities, but ovarian cancer is not always obvious. The only way they can truly diagnose it is through surgery.
When I had my IUD removed in the summer of 2011, I had a transvaginal ultrasound done. When I was diagnosed in 2012, 14 months later, my new GYN pulled that report from 2011. The radiologist noted irregularities on my left ovary, and recommended follow up. My former GYN never mentioned that to me. It was not followed up on. I was only 46 at the time, seemed perfectly healthy, and my family history was on my father's side of the family.
I cannot help but think that if we had done a CA 125 then, and did another one 3 months later, I would have been diagnosed much earlier, and would not have been stage IV. Stage II - maybe even as lucky as Stage I. I wouldn't have had tumors on my omentum requiring its removal, or on my diaphram, which was probably how fluid crossed from my abdomen to the areas around my lungs. That knowledge haunts me late at night sometimes - when I let doubt and worry in. I try not to dwell on it, but it never goes away. Not completely, it's always there, and always will be.
So - if you are reading this and you have any of the symptoms mentioned above - consider going to see your doctor. Even if he tells you that you're being silly - I'd rather be silly than have cancer. So go. Learn from the mistakes that were made by my and that other GYN. Don't ignore your body. Listen to it. It might save your life.
These are not the things that worry a woman - we don't have time to let a little bloating or irregular bowel habits slow us down. And often ovarian cancer hits in our later years - when changes in our cycle and weight gain that doesn't respond well to exercise is part of the change coming on. And again - while we don't *like* it, if you're over 45, you just assume it's the change. It never occurred to me that it might be ovarian cancer until it was too late.
Over the year before my diagnosis, I had a vague sense that my cycles were coming a little too close together. But I had just had my IUD removed, and figured that was why. I had gained weight, and it wasn't until I had been exercising regularly for 9 months without losing any before I started to think it might be something worrisome. 9 months folks. And honestly, it wasn't until I started gaining weight that I took it seriously. That and the fact I was getting short of breath going up stairs at work, even though I had quit smoking a year before. And let's not forget - my grandmother died from this disease - in her early 50s. One of her sisters had it as well when she was much older. I had a family history. Yet it took unexplained weight gain and shortness of breath to get me to a doctor.
I was 47 years old. That's actually considered a bit young for ovarian cancer. How long would I have waited to go to the doctor if I were 50? Or 55? or 60?
There is no way to accurately screen for ovarian cancer currently. For my diagnosis, it took a transvaginal ultrasound, an elevated CA-125 test of 220, and running a biopsy on the fluid they drained from my abdomen as it built up. But you don't want to get to the stage where fluid is building up in your abdomen before being diagnosed. You want to catch it before it gets to that point, and they are still looking for ways to do that. The CA-125 has not been shown to be a reliable indicator of the presence of ovarian cancer, and transvaginal ultrasounds can see some irregularities, but ovarian cancer is not always obvious. The only way they can truly diagnose it is through surgery.
When I had my IUD removed in the summer of 2011, I had a transvaginal ultrasound done. When I was diagnosed in 2012, 14 months later, my new GYN pulled that report from 2011. The radiologist noted irregularities on my left ovary, and recommended follow up. My former GYN never mentioned that to me. It was not followed up on. I was only 46 at the time, seemed perfectly healthy, and my family history was on my father's side of the family.
I cannot help but think that if we had done a CA 125 then, and did another one 3 months later, I would have been diagnosed much earlier, and would not have been stage IV. Stage II - maybe even as lucky as Stage I. I wouldn't have had tumors on my omentum requiring its removal, or on my diaphram, which was probably how fluid crossed from my abdomen to the areas around my lungs. That knowledge haunts me late at night sometimes - when I let doubt and worry in. I try not to dwell on it, but it never goes away. Not completely, it's always there, and always will be.
So - if you are reading this and you have any of the symptoms mentioned above - consider going to see your doctor. Even if he tells you that you're being silly - I'd rather be silly than have cancer. So go. Learn from the mistakes that were made by my and that other GYN. Don't ignore your body. Listen to it. It might save your life.
Wednesday, April 03, 2013
How Hicksville Blessed Us
Um. Wow. I never expected that kind of response to my little ramblings. Thanks so much y'all for all the bloggy love.
When MDH (aka My Darling Husband) and I first talked about moving out to the country, we knew our kids would face an adjustment. And those who might have read my blog back in the day know that acceptance into Hicksville (please know - "Hicksville" is meant in all fondness. I just didn't want to name the actual small town we live near in my blog title) did not come easy. It took time. My eldest had minimal acceptance, my youngest a little more. And my husband and I finally did make a few friends in town. It took some time. But let's be honest - there is a saying out in our part of the country - "If you weren't born here, you ain't from here." We found that to be very true. And we weren't the only ones.
I'm sure it's very common in small rural towns, not just our beloved Hicksville. New people are looked at with reservation, and I would imagine city folk - as we were - are especially considered as outsiders. It was just what it was. We didn't let it bother us much, and as time went on we made some friends. Granted, a lot of those friends were also not born there, but friends are friends and let's face it - we had something in common. It was ok. But we never really felt accepted.
Then I was diagnosed with cancer. A few nights before I had surgery, I mentioned my diagnosis on Facebook. I was completely unprepared for the outpouring of love, affection and support I received not only from my friends, family and work related contacts, but from folks in Hicksville as well. I was astounded. And humbled beyond belief. It wasn't just the not born theres. It was all of them. People I was friends with on Facebook, and their friends. And my kids' friends. And their friends. It was amazing.
Over the next few weeks as I recovered from surgery and tried to regain my strength, those people lifted me up in so many ways. Within days the cards came pouring in - from folks we went to church with in Hicksville, from folks we *didn't* go to church with. It didn't matter. As I posted my progress on Facebook, they would comment and encourage and pray for me and lift me up. It meant so very much to me. My only communication was via my iPhone, and thanks to Facebook, I didn't feel alone. I felt loved.
When I came home from the hospital, the blessings kept coming. In addition to my hockey family (and God Bless Y'all. You were one of the first groups I told about my diagnosis and I should have known from your reaction that I wouldn't be alone through all this. Love you. Everyone single one of y'all) making a schedule to bring meals to my family for the first few weeks, and my work "family" contributing to that, the Hicksville community continued sending cards. And not just cards. We go to the Methodist Church - we had meals from members there. Hell - we had a meal from the FISH class over at the Baptist church - and I barely knew most of those people! One of my son's classmates had his Sunday School class make cards for him to show him that they were praying for us. We constantly heard that the community was praying for us, for me, for health and strength. We had people come over and help clean the house, and do laundry. One gentleman built handrails for my front steps. They helped trim my Christmas tree and decorate my home for the season. Heck - one sweet lady and her husband actually came over in January and took down my Christmas tree and the decorations.
Y'all. I still don't know what I did to deserve that. But I was so very very grateful and humbled by all of it. I'm so lucky that I'm a part of this community. I may not have felt accepted before, but my goodness, I do now. West Texas small town folk know how to take care of their own. I feel like I'm one of their own now. I am so blessed by all of the support I received, and I know all those prayers helped me do as well as I'm doing now.
Hicksville may not be perfect, but I wouldn't live anywhere else. And I continue to be grateful for those I've gotten to know better as I've battled cancer. I hope that one day, once I've gone into remission, a group of us can go and have a few drinks and just laugh and talk about something besides this stupid PITA disease. And I look forward to watching football and basketball games and track meets with them over the next few years. Y'all rock.!
(And - that concludes a couple of days of serious heavy posts. Next up - discovering that the DAY after we lost our beloved dog, a freakin bunny dug a hole in our backyard. Next to the porch. Then sat at the base of the steps as if to taunt us. I assure you - that bunny? Will soon be joining my beloved dog in animal heaven. Little bastard.)
When MDH (aka My Darling Husband) and I first talked about moving out to the country, we knew our kids would face an adjustment. And those who might have read my blog back in the day know that acceptance into Hicksville (please know - "Hicksville" is meant in all fondness. I just didn't want to name the actual small town we live near in my blog title) did not come easy. It took time. My eldest had minimal acceptance, my youngest a little more. And my husband and I finally did make a few friends in town. It took some time. But let's be honest - there is a saying out in our part of the country - "If you weren't born here, you ain't from here." We found that to be very true. And we weren't the only ones.
I'm sure it's very common in small rural towns, not just our beloved Hicksville. New people are looked at with reservation, and I would imagine city folk - as we were - are especially considered as outsiders. It was just what it was. We didn't let it bother us much, and as time went on we made some friends. Granted, a lot of those friends were also not born there, but friends are friends and let's face it - we had something in common. It was ok. But we never really felt accepted.
Then I was diagnosed with cancer. A few nights before I had surgery, I mentioned my diagnosis on Facebook. I was completely unprepared for the outpouring of love, affection and support I received not only from my friends, family and work related contacts, but from folks in Hicksville as well. I was astounded. And humbled beyond belief. It wasn't just the not born theres. It was all of them. People I was friends with on Facebook, and their friends. And my kids' friends. And their friends. It was amazing.
Over the next few weeks as I recovered from surgery and tried to regain my strength, those people lifted me up in so many ways. Within days the cards came pouring in - from folks we went to church with in Hicksville, from folks we *didn't* go to church with. It didn't matter. As I posted my progress on Facebook, they would comment and encourage and pray for me and lift me up. It meant so very much to me. My only communication was via my iPhone, and thanks to Facebook, I didn't feel alone. I felt loved.
When I came home from the hospital, the blessings kept coming. In addition to my hockey family (and God Bless Y'all. You were one of the first groups I told about my diagnosis and I should have known from your reaction that I wouldn't be alone through all this. Love you. Everyone single one of y'all) making a schedule to bring meals to my family for the first few weeks, and my work "family" contributing to that, the Hicksville community continued sending cards. And not just cards. We go to the Methodist Church - we had meals from members there. Hell - we had a meal from the FISH class over at the Baptist church - and I barely knew most of those people! One of my son's classmates had his Sunday School class make cards for him to show him that they were praying for us. We constantly heard that the community was praying for us, for me, for health and strength. We had people come over and help clean the house, and do laundry. One gentleman built handrails for my front steps. They helped trim my Christmas tree and decorate my home for the season. Heck - one sweet lady and her husband actually came over in January and took down my Christmas tree and the decorations.
Y'all. I still don't know what I did to deserve that. But I was so very very grateful and humbled by all of it. I'm so lucky that I'm a part of this community. I may not have felt accepted before, but my goodness, I do now. West Texas small town folk know how to take care of their own. I feel like I'm one of their own now. I am so blessed by all of the support I received, and I know all those prayers helped me do as well as I'm doing now.
Hicksville may not be perfect, but I wouldn't live anywhere else. And I continue to be grateful for those I've gotten to know better as I've battled cancer. I hope that one day, once I've gone into remission, a group of us can go and have a few drinks and just laugh and talk about something besides this stupid PITA disease. And I look forward to watching football and basketball games and track meets with them over the next few years. Y'all rock.!
(And - that concludes a couple of days of serious heavy posts. Next up - discovering that the DAY after we lost our beloved dog, a freakin bunny dug a hole in our backyard. Next to the porch. Then sat at the base of the steps as if to taunt us. I assure you - that bunny? Will soon be joining my beloved dog in animal heaven. Little bastard.)
Tuesday, April 02, 2013
It Ain't Moonlight & Roses
I've been debating for sometime whether I wanted to blog about my battle with cancer, beyond just saying I have it. For some reason, I feel like I should. There isn't near enough talk about ovarian cancer, and trying to find out if what I'm feeling or going through is normal has been difficult at best. There's tons of resources and information out there for breast cancer, for colon cancer, for damn near every other type of cancer out there. But it's like ovarian cancer for some reason is a big ole secret.
No wonder there's no cure yet!
I've put alot of stuff on Facebook about my battle. I've tried to stay positive as much as I can - from the beginning I've been convinced that I was going to be one of the 30% that survive and are cured. I get folks who tell me I'm an inspiration, and to be perfectly honest, that makes me feel weird. I'm not trying to be inspiring. I'm just trying to survive, you know? A nurse on the oncology floor told me very early on in my treatment that it was the feisty ones that make it. So yeah - I've indulged my inner feisty. But not to inspire anyone - just to do everything I can to live. Sure, I could be all doom and gloom and focus on that 70% statistic, but I've always felt it made more sense to choose to be happy, and positive. So that's what I did. What choice did I really have? I want to live. I want to see my boys marry. To hold my grandchildren someday. I have PLANS people!
I've lost most of my hair. What I have left is less than an inch long, sparse, and mostly GRAY. Not cool. I was totally hoping that if it must fall out, surely it could grow back in blonde and curly? Or even black and curly. Nooooo - it's gray. Hmph. I wear scarves rather than hats because my scalp is sensitive and hats often hurt. My mom gave me a ton of my grandmother's scarves, so that's been kinda cool having them to wear. I've also lost my eyelashes and eyebrows. I draw the eyebrows on now...just like an old woman. I haven't yet gotten the nerve up to wear false eyelashes.
I've been able to eat normally now for about a month. For about 4 months I could barely stomach anything. I probably would have lost way too much weight, but my husband insisted I get put on TPN for several weeks. What's TPN? Why, it's nutrition via IV. Yes, that's right, I received my nutrition via a big ole bag full o white stuff for over a month. I had to cart it around on a luggage cart during the day because if I hooked up to it at night, I had to go pee every freakin 2 hours. Stopping TPN was one of my happiest days.
My torso hurts after I've been sitting for very long. It's fine while I'm sitting, but when I stand up, I'm all hunched over and feel like I have to stretch something out so that I can stand upright. It takes a few minutes before I can do that...but it still hurts as I walk. And when I first lay down at night.
Oh! Did I mention that I have tubes on both sides that go into the sac around my lungs so I can drain fluid from around them every 3 days? Thank goodness my husband learned how to do that...I don't think anyone thought I'd still be draining 4 months after they were put in. I did get the abdominal drain taken out a while back when we stopped being able to drain fluid from there. But that fluid around my lungs just won't go away, and that worries us some.
My CA-125 count is now down to 39. Normal is 2 - 35. So close. So very very close. I was at 1198 when I had my first chemo last November. So I know the chemo is working. But why do I still have that fluid? I'm trying to focus on the CA-125 more than the fluid. And how good I feel.
I went back to work several weeks ago. Half time at first, but this week I've been working all day. It feels so good to be back at work - to be taking care of things for my faculty and staff. I missed that. I missed it a lot.
Huh. So this turned into the "whine about cancer treatment side effects" blog. Sorry about that. But maybe someday some other chick will be recovering from surgery, going through chemo and wonder if her tummy hurting is normal and she'll find this entry. I hope it makes her feel better. I hope it gives her hope. Because when she starts reading through the rest of the blog - I want her to find a whole bunch of posts about gardening, and cows and chickens and what a blessing living in a small town community is (that will be my next entry I promise - wait until you hear how Hicksville rallied behind me and my family when word about my diagnosis got out. I'm still astounded). Anyhoo - that's my plan man.
And I'm a Taurus - once we set our minds on something, its a done deal.
You hear that cancer??? DONE DEAL.
No wonder there's no cure yet!
I've put alot of stuff on Facebook about my battle. I've tried to stay positive as much as I can - from the beginning I've been convinced that I was going to be one of the 30% that survive and are cured. I get folks who tell me I'm an inspiration, and to be perfectly honest, that makes me feel weird. I'm not trying to be inspiring. I'm just trying to survive, you know? A nurse on the oncology floor told me very early on in my treatment that it was the feisty ones that make it. So yeah - I've indulged my inner feisty. But not to inspire anyone - just to do everything I can to live. Sure, I could be all doom and gloom and focus on that 70% statistic, but I've always felt it made more sense to choose to be happy, and positive. So that's what I did. What choice did I really have? I want to live. I want to see my boys marry. To hold my grandchildren someday. I have PLANS people!
I've lost most of my hair. What I have left is less than an inch long, sparse, and mostly GRAY. Not cool. I was totally hoping that if it must fall out, surely it could grow back in blonde and curly? Or even black and curly. Nooooo - it's gray. Hmph. I wear scarves rather than hats because my scalp is sensitive and hats often hurt. My mom gave me a ton of my grandmother's scarves, so that's been kinda cool having them to wear. I've also lost my eyelashes and eyebrows. I draw the eyebrows on now...just like an old woman. I haven't yet gotten the nerve up to wear false eyelashes.
I've been able to eat normally now for about a month. For about 4 months I could barely stomach anything. I probably would have lost way too much weight, but my husband insisted I get put on TPN for several weeks. What's TPN? Why, it's nutrition via IV. Yes, that's right, I received my nutrition via a big ole bag full o white stuff for over a month. I had to cart it around on a luggage cart during the day because if I hooked up to it at night, I had to go pee every freakin 2 hours. Stopping TPN was one of my happiest days.
My torso hurts after I've been sitting for very long. It's fine while I'm sitting, but when I stand up, I'm all hunched over and feel like I have to stretch something out so that I can stand upright. It takes a few minutes before I can do that...but it still hurts as I walk. And when I first lay down at night.
Oh! Did I mention that I have tubes on both sides that go into the sac around my lungs so I can drain fluid from around them every 3 days? Thank goodness my husband learned how to do that...I don't think anyone thought I'd still be draining 4 months after they were put in. I did get the abdominal drain taken out a while back when we stopped being able to drain fluid from there. But that fluid around my lungs just won't go away, and that worries us some.
My CA-125 count is now down to 39. Normal is 2 - 35. So close. So very very close. I was at 1198 when I had my first chemo last November. So I know the chemo is working. But why do I still have that fluid? I'm trying to focus on the CA-125 more than the fluid. And how good I feel.
I went back to work several weeks ago. Half time at first, but this week I've been working all day. It feels so good to be back at work - to be taking care of things for my faculty and staff. I missed that. I missed it a lot.
Huh. So this turned into the "whine about cancer treatment side effects" blog. Sorry about that. But maybe someday some other chick will be recovering from surgery, going through chemo and wonder if her tummy hurting is normal and she'll find this entry. I hope it makes her feel better. I hope it gives her hope. Because when she starts reading through the rest of the blog - I want her to find a whole bunch of posts about gardening, and cows and chickens and what a blessing living in a small town community is (that will be my next entry I promise - wait until you hear how Hicksville rallied behind me and my family when word about my diagnosis got out. I'm still astounded). Anyhoo - that's my plan man.
And I'm a Taurus - once we set our minds on something, its a done deal.
You hear that cancer??? DONE DEAL.
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