So. Here we are in Houston. We have visited with the clinical trial folks, and they don't think I'm strong enough to be on a trial. Most of that is probably due to my lungs not working well these days. They are also sending me to another lung doctor, as well as a nutritionist doc.
Since clinical trials are currently off the table, I also saw the same doc I saw last year at MD Anderson. The last couple of months, my oncologist at home has been telling me that she can feel nodules during my physical exam, which coupled with my CA-125 had her convinced my cancer was not responding to treatment. When I saw Dr Coleman, he did not feel anything. Neither did his PA. Considering last year he didn't have any problem feeling a mass there, it makes me feel like maybe things aren't as dire as we thought.
Needless to say, my doc here had me go for new scans since there was some weird mix up and none of my scans or records for the last year made it here. We brought the report from the chest CT, but apparently it wasn't very detailed (I believe the doc's comment was "well that tells me nothing") - I'm hoping that will tell us one way or another.
All of that just to explain that we have a plan (which is almost exactly what my doc at home wanted to put me on) but the doc here at MDA will be making the recommendations. And we are going to see about going back to my old treatment center. The folks at the new one seem very nice, but I'm just not comfortable there. I miss Arrington and how it worked. So when we get back home we are going to get that arranged.
Yes - that also means I'll be going back to my original oncologist, but coming down here on a regular basis. I really did like Dr H, but I'm not sure I have confidence in her after seeing Dr C down here. Not only was he sure he didn't feel any nodules, but he was also concerned how quickly we had switched from chemo to chemo. He said that you shouldn't base treatment decisions on just the CA-125. Some of those drugs might have been working. *sigh*
Yikes. This is getting seriously long. Sorry about that.
So anyhoo - we still here in Houston while the boys hold down the fort at home. We are hoping to get to go home next Wednesday. I am ready. I miss my bed. I miss my house, my herd, my garden, my chickens - an oxygen set-up that I don't have to lug around.
It's the little things.
This morning the hubs is running errands and I'm lying in bed like Lady Mary snacking on Rosemary and Garlic Triscuits. We are supposed to have dinner with the hubs' cousin and family tonight, and with a couple of my awesome alumni and their awesome wives on Sunday. This afternoon we have to go buy me some clothes because for some odd reason I brought 5 pairs of britches and only 3 tops. (Yeah - don't ask - my mind wasn't working - none of the shirts will go with a couple of britches either. ) Maybe tomorrow we'll go to a movie. It's just taking it day by day.
As usual.
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.
Showing posts with label Cancer. Show all posts
Showing posts with label Cancer. Show all posts
Friday, October 10, 2014
Monday, September 22, 2014
Precious moments
I've been kind of nervous about today.
Last week, I had a couple of tests run to see what kind of condition I was in. In addition, I had to make copies of the paperwork my oncologist had completed and provided to support my disability retirement application, so I planned to read through that as well. Today was the day I expected to have to face some hard truths - and I assure you, I was scared. I spent all weekend planning for the worst so that when I read it I wouldn't be devastated and would be able to handle it.
Because expecting the worst is just how I roll, y'all. If you expect the worst, then either you're all prepared when your expectation is met, or your happily surprised when it's not as bad.
I'm happy to say, I was happily surprised for the most part.
Not that there aren't a couple of things that weren't happy news. There appears to be something on my liver that they aren't sure what it is - and I'm pretty sure while I had a teeny spot there previously, this is new. And my lungs are working at 50% capacity, which isn't good. But other than that - no masses, nothing else showing up other some slight thickening and a small amount of abdominal ascites. To top it all off, after 5 days, when we went to drain my pleural effusion, we hardly were able to drain anything.
All in all, it's good news. Not great, but good. I'm bummed my lungs are working so poorly, but my PCP wants me to see a pulmonary doctor to see if we can get them working a bit better. I'm not sure about the "thickening" but I haven't seen a copy of the report yet, and it's likely that maybe they are referring to something that has been seen before.
Advanced stage cancer patients like myself are always looking for the silver lining. To focus on the good news, and find a way to accept the not so good news. When you are constantly facing down the big C, you can either let all the doom and gloom take you under, or you find a way to make the news work for you. As a glass half full kind of gal, I try to stay realistic but still positive.
I was having a ton of trouble doing that on the Gemzar. I felt so horrible after a dose, and after the shots to boost my white blood cell counts I just wanted to give up. I was constantly battling the feeling that there was just no point to all this, and that I just couldn't keep fighting. I spent a huge amount of time near tears, and it took nothing to tip me over the edge. Pair that with the fact that crying tends to make breathing oxygen through a nose tube difficult, and you have a recipe for "Mysti don't play that."
The hubs and I spent some time in discussion, and after realizing just how much worse my breathing was after the last two doses of Gemzar, we made the tough decision to discontinue that particular drug. My CA-125 has continued to rise while on it, and although it appears to have finally put a end to the pleural effusions at last, it just isn't worth it. I'm already afraid that my poor lung function will prevent me from getting on a clinical trial, and I just can't risk it getting any worse. So that's that.
I haven't had a chance to talk to my doc about going down to MDA for a consultation/see about a trial yet. I don't see her again until the first week of October. Her nurse has already told me that they plan on switching me to Doxil since I won't do Gemzar any more, and that terrifies me as well. Doxil has some wicked side effects. But I'm thinking that maybe we will hold off on that until after we see the doctors at MDA and see what they might have for me before a decision is made on that.
So that's where we are health wise. On the homefront, we have had a crazy amount of rain over the last couple of weeks, and my cantaloupe vines have bit the dust due to whiteflies and fungus, and some of the watermelon vines and the cucumber vines are thinking of following suit. I'm glad I made the pickles I did when I was feeling better because I don't know if I'll make any more. I'm enjoying the seriously tasty watermelons we've picked from one of our volunteer "I sure don't have any clue what kind it is, but it sure is healthy!" vines, and what few cantaloupe we have been able to save. We're also sharing with everyone we can because these are big watermelon, and that volunteer vine has a whole lot of melons on it, not to mention the couple we planted have a fair amount on them, as well as the other type of volunteer vine on the far end of the field.
My tomato plants finally put on fruit, and I'm hoping I get enough to make a batch or two of hot sauce. It would help if it would warm back up around here for a couple of weeks, but we'll just have to wait and see on that.
I totally downloaded an app to create To Do lists on my Kindle in hopes that having a list to work from each morning with get me to do more than see how many episodes of L&O:SVU I can watch each day. I just feel better if I move around more, so that seemed to help today and I'll just keep that going.
It's just taking things day by day. Finding ways to make each day have purpose, and to spend time with my boys or my husband when I can. These days are precious - whether you know how many you have left, or if you are guessing, or even if you just assume you have a plethora of them in your future. They are still precious - and I'm trying to make the most of them.
Here's hoping you do the same.
Last week, I had a couple of tests run to see what kind of condition I was in. In addition, I had to make copies of the paperwork my oncologist had completed and provided to support my disability retirement application, so I planned to read through that as well. Today was the day I expected to have to face some hard truths - and I assure you, I was scared. I spent all weekend planning for the worst so that when I read it I wouldn't be devastated and would be able to handle it.
Because expecting the worst is just how I roll, y'all. If you expect the worst, then either you're all prepared when your expectation is met, or your happily surprised when it's not as bad.
I'm happy to say, I was happily surprised for the most part.
Not that there aren't a couple of things that weren't happy news. There appears to be something on my liver that they aren't sure what it is - and I'm pretty sure while I had a teeny spot there previously, this is new. And my lungs are working at 50% capacity, which isn't good. But other than that - no masses, nothing else showing up other some slight thickening and a small amount of abdominal ascites. To top it all off, after 5 days, when we went to drain my pleural effusion, we hardly were able to drain anything.
All in all, it's good news. Not great, but good. I'm bummed my lungs are working so poorly, but my PCP wants me to see a pulmonary doctor to see if we can get them working a bit better. I'm not sure about the "thickening" but I haven't seen a copy of the report yet, and it's likely that maybe they are referring to something that has been seen before.
Advanced stage cancer patients like myself are always looking for the silver lining. To focus on the good news, and find a way to accept the not so good news. When you are constantly facing down the big C, you can either let all the doom and gloom take you under, or you find a way to make the news work for you. As a glass half full kind of gal, I try to stay realistic but still positive.
I was having a ton of trouble doing that on the Gemzar. I felt so horrible after a dose, and after the shots to boost my white blood cell counts I just wanted to give up. I was constantly battling the feeling that there was just no point to all this, and that I just couldn't keep fighting. I spent a huge amount of time near tears, and it took nothing to tip me over the edge. Pair that with the fact that crying tends to make breathing oxygen through a nose tube difficult, and you have a recipe for "Mysti don't play that."
The hubs and I spent some time in discussion, and after realizing just how much worse my breathing was after the last two doses of Gemzar, we made the tough decision to discontinue that particular drug. My CA-125 has continued to rise while on it, and although it appears to have finally put a end to the pleural effusions at last, it just isn't worth it. I'm already afraid that my poor lung function will prevent me from getting on a clinical trial, and I just can't risk it getting any worse. So that's that.
I haven't had a chance to talk to my doc about going down to MDA for a consultation/see about a trial yet. I don't see her again until the first week of October. Her nurse has already told me that they plan on switching me to Doxil since I won't do Gemzar any more, and that terrifies me as well. Doxil has some wicked side effects. But I'm thinking that maybe we will hold off on that until after we see the doctors at MDA and see what they might have for me before a decision is made on that.
So that's where we are health wise. On the homefront, we have had a crazy amount of rain over the last couple of weeks, and my cantaloupe vines have bit the dust due to whiteflies and fungus, and some of the watermelon vines and the cucumber vines are thinking of following suit. I'm glad I made the pickles I did when I was feeling better because I don't know if I'll make any more. I'm enjoying the seriously tasty watermelons we've picked from one of our volunteer "I sure don't have any clue what kind it is, but it sure is healthy!" vines, and what few cantaloupe we have been able to save. We're also sharing with everyone we can because these are big watermelon, and that volunteer vine has a whole lot of melons on it, not to mention the couple we planted have a fair amount on them, as well as the other type of volunteer vine on the far end of the field.
My tomato plants finally put on fruit, and I'm hoping I get enough to make a batch or two of hot sauce. It would help if it would warm back up around here for a couple of weeks, but we'll just have to wait and see on that.
I totally downloaded an app to create To Do lists on my Kindle in hopes that having a list to work from each morning with get me to do more than see how many episodes of L&O:SVU I can watch each day. I just feel better if I move around more, so that seemed to help today and I'll just keep that going.
It's just taking things day by day. Finding ways to make each day have purpose, and to spend time with my boys or my husband when I can. These days are precious - whether you know how many you have left, or if you are guessing, or even if you just assume you have a plethora of them in your future. They are still precious - and I'm trying to make the most of them.
Here's hoping you do the same.
Tuesday, September 09, 2014
Life After
So here I am - in my first week of not working. So far it's been spent sleeping until 9 am, then watching Law & Order: SVU while checking Facebook, then lunch with friends, then a shot to build my white blood counts. It's also been trying to adjust to wearing oxygen 24/7, and trying to figure out how to balance the rest I need with being active enough that I don't lose any more stamina or strength. That's the tough one to figure out.
The whole process is just weird - after all, I've worked steadily since I was 18. Being without a job is scary and just odd. I wonder how long it will be before I start climbing the walls? Or will I become obsessed with seeing every episode of Law & Order in all of its incarnations?
On top of all that, my CA-125 continues to rise, although the fluid around my lungs seems to have gone down significantly. My oncologist wants me to try one more cycle of the Gemzar, and if the CA-125 hasn't gone down (and the nodule she's able to feel during my physical exam hasn't gotten smaller), then she is all ready to switch to yet another drug.
While I'm glad she's not waiting forever to try something new, the fact is we are running out of drugs. And since starting the Gemzar, we have seen my lung capacity diminish to the point that I have to be on oxygen. Since I'm unable to have any platinum drugs with any of these other drugs, it cuts our options in half. And I'm not so sure I'm ok with just running through the drugs she has in mind then just saying that's it.
I'm thinking maybe it's time to see about clinical trials again.
Last year when we went down to MD Anderson, my only options were trials that required me to be there every week, for 3 or so days a week. That just wasn't an option with youngest son still in high school. But youngest son is now in college. Eldest son is also in a better place than he was last year. Now I'm not working - so I could be there weekly if need be. So we may be looking at going down to see if there are any trials I qualify for now.
I worry that I've had too many lines of treatment - that there aren't any trials for women with such persistent ovarian cancer at MD Anderson right now. But it is worth a try - it's worth seeing if there is anything that might affect this stubborn bitch trying to take over my body. To see if I have more than the 8 - 12 months I would have left if I kept trying drug after drug that didn't work. Because my goals haven't changed in the last two years.
I still have grandbabies to see born - and to hold. That means lasting a helluva lot longer than another year.
Wish us luck.
The whole process is just weird - after all, I've worked steadily since I was 18. Being without a job is scary and just odd. I wonder how long it will be before I start climbing the walls? Or will I become obsessed with seeing every episode of Law & Order in all of its incarnations?
On top of all that, my CA-125 continues to rise, although the fluid around my lungs seems to have gone down significantly. My oncologist wants me to try one more cycle of the Gemzar, and if the CA-125 hasn't gone down (and the nodule she's able to feel during my physical exam hasn't gotten smaller), then she is all ready to switch to yet another drug.
While I'm glad she's not waiting forever to try something new, the fact is we are running out of drugs. And since starting the Gemzar, we have seen my lung capacity diminish to the point that I have to be on oxygen. Since I'm unable to have any platinum drugs with any of these other drugs, it cuts our options in half. And I'm not so sure I'm ok with just running through the drugs she has in mind then just saying that's it.
I'm thinking maybe it's time to see about clinical trials again.
Last year when we went down to MD Anderson, my only options were trials that required me to be there every week, for 3 or so days a week. That just wasn't an option with youngest son still in high school. But youngest son is now in college. Eldest son is also in a better place than he was last year. Now I'm not working - so I could be there weekly if need be. So we may be looking at going down to see if there are any trials I qualify for now.
I worry that I've had too many lines of treatment - that there aren't any trials for women with such persistent ovarian cancer at MD Anderson right now. But it is worth a try - it's worth seeing if there is anything that might affect this stubborn bitch trying to take over my body. To see if I have more than the 8 - 12 months I would have left if I kept trying drug after drug that didn't work. Because my goals haven't changed in the last two years.
I still have grandbabies to see born - and to hold. That means lasting a helluva lot longer than another year.
Wish us luck.
Tuesday, September 02, 2014
Identity
In the summer of 1990, I was working for Kelly Girls when I received a call to come interview for a job at Mid-Sized University. I had wanted to work for Mid-Sized University for some time, as I knew they had excellent benefits, including generous sick and vacation time on top of the best paid holiday schedule in town. I had had a couple of previous interviews at M-SU, but nothing had panned out as of yet. I had a good feeling about this one though.
This one was in a department located right above where my beloved Aunt Linda worked. An entry level position in Computer Science - and my last two jobs were computer oriented (ok - data entry, but still). My interview went perfectly, and sure enough - I was offered the job. So in the fall of 1990, I started a job that would define the woman I would become.
When I started that job, I was still a girl practically. Engaged, but not married, no children and still trying to find out who I really was. Over the years I married the Hubs, had two children, and was promoted several times. In the process I grew up. I became a woman who had confidence in her abilities to handle any job given to her, of any situation, to take on new tasks and experience without freaking out. I had lucked out you see. I found my place. My niche.
Not many people find the job they are meant to have when they are 25. I got to crunch numbers, to work with students, to write a newsletter, to do layout and play with graphics, to work with webpages, and to work with alumni. When I started, the department had 10 faculty, and maybe 30 grad students. As I leave it's grown to 15 or so faculty, 150 grad students, and instead of two office staff, there are four. I was so very very lucky to have been hired into a department that took care of me as well as I took care of it. They have been my second family.
Today, I turned in my resignation. It became increasingly obvious over the last few weeks that I am unable to perform my job any longer. I had resisted this decision for months - how do I leave the job that has helped define who I am? How can I walk away from the department who made sure I had a place to return to after the birth of my children, after recovering from cancer - hell - even after I tried to leave them for a couple of years?
I had to do it. They deserve someone who can do the job fully - and that is not me any more. I will work part time this week, then they will start a new chapter without me. It is breaking my heart, but I know I need to focus more on me and less on them.
Now how to I figure out how to be Mysti without them?
This one was in a department located right above where my beloved Aunt Linda worked. An entry level position in Computer Science - and my last two jobs were computer oriented (ok - data entry, but still). My interview went perfectly, and sure enough - I was offered the job. So in the fall of 1990, I started a job that would define the woman I would become.
When I started that job, I was still a girl practically. Engaged, but not married, no children and still trying to find out who I really was. Over the years I married the Hubs, had two children, and was promoted several times. In the process I grew up. I became a woman who had confidence in her abilities to handle any job given to her, of any situation, to take on new tasks and experience without freaking out. I had lucked out you see. I found my place. My niche.
Not many people find the job they are meant to have when they are 25. I got to crunch numbers, to work with students, to write a newsletter, to do layout and play with graphics, to work with webpages, and to work with alumni. When I started, the department had 10 faculty, and maybe 30 grad students. As I leave it's grown to 15 or so faculty, 150 grad students, and instead of two office staff, there are four. I was so very very lucky to have been hired into a department that took care of me as well as I took care of it. They have been my second family.
Today, I turned in my resignation. It became increasingly obvious over the last few weeks that I am unable to perform my job any longer. I had resisted this decision for months - how do I leave the job that has helped define who I am? How can I walk away from the department who made sure I had a place to return to after the birth of my children, after recovering from cancer - hell - even after I tried to leave them for a couple of years?
I had to do it. They deserve someone who can do the job fully - and that is not me any more. I will work part time this week, then they will start a new chapter without me. It is breaking my heart, but I know I need to focus more on me and less on them.
Now how to I figure out how to be Mysti without them?
Friday, August 15, 2014
In One Moment
From one moment to the next, your entire world can change.
In early October of 2012, I spent my lunch one day laughing and talking with friends and co-workers, with nothing more than the every day cares of a wife and mother on my mind. As I came back from that lunch, I became short of breath - and my whole life changed.
That was the beginning of my diagnosis - that moment when I realized how short of breath I was, and knowing that I shouldn't be. It led to me googling ovarian cancer symptoms, then making an appointment with an ob/gyn that was able to start the diagnosis process. Just like that - I stopped being just a normal, slightly overweight forty-something, and became an ovarian cancer patient.
A Survivor.
It's been a crazy couple of years. I mentioned last time I wrote that my new oncologist was switching chemo drugs since the taxol had quit working. I had two rounds of topotecan, and my CA-125 kept rising. So last week, she switched me to gemzar with avastin and we once again started knocking on wood and desperately pleading with God to just let this one work. Please. (Ok - that was just me desperately pleading)
This morning, I was told that my white blood count was way too low to do chemo. The plan was 3 weeks on with gemzar, then one week off. Being told this morning that I couldn't even do a second dose devastated me. I felt like my body had decided to take cancer's side - like it wouldn't even help me to save my own life. It's silly, I know, but it's weird how after a certain amount of time you start to think of your cancer as a cognizant entity, separate from yourself. You give it its own identity - evil of course. Because only something evil could put you through so much pain and fear.
The truth is, cancer is just mutating cells, with no mind of their own. They divide and multiply because that is what they do. They aren't actively trying to kill you specifically - they just multiply over and over again because...well...they don't know how to do anything else. Our job is to find some way to stop the cells from replicating, and to kill them out.
Simple, right?
It's scary to realize that you may not be able to tolerate the drugs that can save you - the drugs that might get your cancer under control, or eliminate it completely. I had a major melt down this morning, completely unable to control my tears, sobbing to my husband asking why? Why is this happening? I try so hard to be a good person - to say my prayers, to be kind, to not cause anyone pain, to be fair, to be an example of how a woman of faith handles this type of diagnosis - with grace, and dignity and without bitterness. I'm not perfect. But I try - I really do try. I have a good heart. So why is drug after drug put beyond my reach? Why is my body betraying me? Doesn't it want to LIVE?
I do. I want to live. I *want* to be a warrior. A warrior queen, fighting off the evil cancer from my body. I may no longer be able to pull off a Xena outfit. And I can't do that if my own body won't tolerate the treatment. In a moment this morning, my whole world view changed, and I felt like I was facing my own mortality for real.
Scary shit, my friends. Scary shit.
Once I was settled down, and we were able to get my fluid drained off (had a minor blockage when trying to do it last night, so we had to do it at the cancer center), the hubs and I left the cancer center, and after running a couple of errands (ok - he ran them. Due to my low numbers, I was forbidden from leaving the car), we headed home. While he was running errands, I posted a plea on Facebook - asking for prayers from the prayer warriors, and positive energy from everyone else that my white cells would rebound so I could have treatment. My awesome friends responded. And I started trying to think of how we would keep fighting - would it be a new chemo? Should we start looking ahead to going back to MD Anderson? I got myself back into fighter mode.
I have never been much of a victim.
Thirty minutes later, on our way home, the cancer center called and told us to come back. My oncologist had decided that I was to have shots to boost my blood marrow into making more white cells today, and for the following four days. So I can have treatment next Friday.
Another answered prayer. Another moment where my world changed in an instant. From the depths of despair (or at least on the second flight of steps down) to the return of hope. Hope that I will be able to have this chemo drug - maybe not 3 weeks in a row. Maybe every other week. Maybe with the shots I can have it two weeks on, two weeks off. Hope that I can still fight this horrible disease.
A return of faith.
(The last two times I've drained, the amount has gone down. That would point to the gemzar working. I won't have my CA-125 run again until September, but I'm hopeful that it might go down at last. It's nice to have hope. It's nice to have good news again.)
In early October of 2012, I spent my lunch one day laughing and talking with friends and co-workers, with nothing more than the every day cares of a wife and mother on my mind. As I came back from that lunch, I became short of breath - and my whole life changed.
That was the beginning of my diagnosis - that moment when I realized how short of breath I was, and knowing that I shouldn't be. It led to me googling ovarian cancer symptoms, then making an appointment with an ob/gyn that was able to start the diagnosis process. Just like that - I stopped being just a normal, slightly overweight forty-something, and became an ovarian cancer patient.
A Survivor.
It's been a crazy couple of years. I mentioned last time I wrote that my new oncologist was switching chemo drugs since the taxol had quit working. I had two rounds of topotecan, and my CA-125 kept rising. So last week, she switched me to gemzar with avastin and we once again started knocking on wood and desperately pleading with God to just let this one work. Please. (Ok - that was just me desperately pleading)
This morning, I was told that my white blood count was way too low to do chemo. The plan was 3 weeks on with gemzar, then one week off. Being told this morning that I couldn't even do a second dose devastated me. I felt like my body had decided to take cancer's side - like it wouldn't even help me to save my own life. It's silly, I know, but it's weird how after a certain amount of time you start to think of your cancer as a cognizant entity, separate from yourself. You give it its own identity - evil of course. Because only something evil could put you through so much pain and fear.
The truth is, cancer is just mutating cells, with no mind of their own. They divide and multiply because that is what they do. They aren't actively trying to kill you specifically - they just multiply over and over again because...well...they don't know how to do anything else. Our job is to find some way to stop the cells from replicating, and to kill them out.
Simple, right?
It's scary to realize that you may not be able to tolerate the drugs that can save you - the drugs that might get your cancer under control, or eliminate it completely. I had a major melt down this morning, completely unable to control my tears, sobbing to my husband asking why? Why is this happening? I try so hard to be a good person - to say my prayers, to be kind, to not cause anyone pain, to be fair, to be an example of how a woman of faith handles this type of diagnosis - with grace, and dignity and without bitterness. I'm not perfect. But I try - I really do try. I have a good heart. So why is drug after drug put beyond my reach? Why is my body betraying me? Doesn't it want to LIVE?
I do. I want to live. I *want* to be a warrior. A warrior queen, fighting off the evil cancer from my body. I may no longer be able to pull off a Xena outfit. And I can't do that if my own body won't tolerate the treatment. In a moment this morning, my whole world view changed, and I felt like I was facing my own mortality for real.
Scary shit, my friends. Scary shit.
Once I was settled down, and we were able to get my fluid drained off (had a minor blockage when trying to do it last night, so we had to do it at the cancer center), the hubs and I left the cancer center, and after running a couple of errands (ok - he ran them. Due to my low numbers, I was forbidden from leaving the car), we headed home. While he was running errands, I posted a plea on Facebook - asking for prayers from the prayer warriors, and positive energy from everyone else that my white cells would rebound so I could have treatment. My awesome friends responded. And I started trying to think of how we would keep fighting - would it be a new chemo? Should we start looking ahead to going back to MD Anderson? I got myself back into fighter mode.
I have never been much of a victim.
Thirty minutes later, on our way home, the cancer center called and told us to come back. My oncologist had decided that I was to have shots to boost my blood marrow into making more white cells today, and for the following four days. So I can have treatment next Friday.
Another answered prayer. Another moment where my world changed in an instant. From the depths of despair (or at least on the second flight of steps down) to the return of hope. Hope that I will be able to have this chemo drug - maybe not 3 weeks in a row. Maybe every other week. Maybe with the shots I can have it two weeks on, two weeks off. Hope that I can still fight this horrible disease.
A return of faith.
(The last two times I've drained, the amount has gone down. That would point to the gemzar working. I won't have my CA-125 run again until September, but I'm hopeful that it might go down at last. It's nice to have hope. It's nice to have good news again.)
Tuesday, July 01, 2014
When a Chemo Quits Working
So.
Here it is July, and I haven't written anything since April. I thought it might be time to explain why.
You see, back in April when I was worrying about whether the Taxol was working - it wasn't. After 2 months of being just under the normal limit number for my CA-125, it went up. And the next month it went up again, so it was decided that the Taxol was no longer effective on my cancer cells. Needless to say, I had a minor freakout about it - and I just didn't know how to write about it. First I was waiting for my youngest to graduate high school, then until we told the boys and my folks what was going on. Then I was waiting until my new oncologist and I made a decision on what to try next. But it's been too long since I wrote, and I'm feeling the effects. So here it is.
My new oncologist is a gynecologic oncologist, and she is VERY up on the latest methods/chemos/etc for my type of cancer. So she decided - even before we realized the Taxol wasn't really working anymore - to take some of the fluid that I'm draining from around my lung and send it off for testing - first to see whether or not there are cancer cells in the fluid, second to see what chemos it responds to. By the time it was obvious that Taxol wasn't working anymore, she knew that yes - there were still cancer cells in that fluid, and more importantly, she knew which chemotherapies that those cancer cells were responsive to.
The good news is that I have several options. There are other taxil chemo agents that I can use later, as well as several other drugs. She started me off with Topotecan three weeks on, one week off, and Avastin on weeks one and three. Unfortunately, after two weeks, the Topotecan kicked my blood counts into the dirt, so no chemo last week! I see her next week and we'll decide if we're going to change to two weeks on, two weeks off or lower the dosage and stay on the three week schedule, or whatever else she thinks might work.
It's unsettling. Coming at the end of a week that included the Oncology Advisory division of the FDA voting against fast-tracking Olaparib for ovarian cancer treatment (hmph) and a delay of an event I had been hoping to get done next month, it was not what I wanted to hear. It did explain why I was so tired at the end of the day last week. Anyhoo - that's where I'm at. I am happy to say that the fluid around my lungs that had been increasing since the end of Taxol seems to be decreasing just a bit lately - so I'm hopeful the Topotecan is making some headway against the cancer. My scans in June were still clear, so whatever is going on in there is still pretty small. I'm not getting my chemo free summer, but having a week off every month will be heaven.
In other news - as I said, the youngest graduated high school. My garden is growing, my flowers are so pretty and just make me smile every day:
We've had plenty of rain this summer so far, and this morning, our new cow dropped her calf! So we officially have a herd!
Here it is July, and I haven't written anything since April. I thought it might be time to explain why.
You see, back in April when I was worrying about whether the Taxol was working - it wasn't. After 2 months of being just under the normal limit number for my CA-125, it went up. And the next month it went up again, so it was decided that the Taxol was no longer effective on my cancer cells. Needless to say, I had a minor freakout about it - and I just didn't know how to write about it. First I was waiting for my youngest to graduate high school, then until we told the boys and my folks what was going on. Then I was waiting until my new oncologist and I made a decision on what to try next. But it's been too long since I wrote, and I'm feeling the effects. So here it is.
My new oncologist is a gynecologic oncologist, and she is VERY up on the latest methods/chemos/etc for my type of cancer. So she decided - even before we realized the Taxol wasn't really working anymore - to take some of the fluid that I'm draining from around my lung and send it off for testing - first to see whether or not there are cancer cells in the fluid, second to see what chemos it responds to. By the time it was obvious that Taxol wasn't working anymore, she knew that yes - there were still cancer cells in that fluid, and more importantly, she knew which chemotherapies that those cancer cells were responsive to.
The good news is that I have several options. There are other taxil chemo agents that I can use later, as well as several other drugs. She started me off with Topotecan three weeks on, one week off, and Avastin on weeks one and three. Unfortunately, after two weeks, the Topotecan kicked my blood counts into the dirt, so no chemo last week! I see her next week and we'll decide if we're going to change to two weeks on, two weeks off or lower the dosage and stay on the three week schedule, or whatever else she thinks might work.
It's unsettling. Coming at the end of a week that included the Oncology Advisory division of the FDA voting against fast-tracking Olaparib for ovarian cancer treatment (hmph) and a delay of an event I had been hoping to get done next month, it was not what I wanted to hear. It did explain why I was so tired at the end of the day last week. Anyhoo - that's where I'm at. I am happy to say that the fluid around my lungs that had been increasing since the end of Taxol seems to be decreasing just a bit lately - so I'm hopeful the Topotecan is making some headway against the cancer. My scans in June were still clear, so whatever is going on in there is still pretty small. I'm not getting my chemo free summer, but having a week off every month will be heaven.
In other news - as I said, the youngest graduated high school. My garden is growing, my flowers are so pretty and just make me smile every day:
We've had plenty of rain this summer so far, and this morning, our new cow dropped her calf! So we officially have a herd!
(Click to see cows! And babies!)
The hubs and I took a long weekend trip to Cloudcroft for our anniversary last month, and we're just taking things day by day. I'm going to try and write more often, but to be honest - when I get home from work I'd much rather work in the garden or yard for a bit before I sit down to catch up on Facebook - or reading, much less writing. We'll see.
So here I am - doing my best not to just survive - but to thrive. So far - so good.
Thursday, April 17, 2014
My Season of Discontent
The wind is blowing again - as it has been for the last several weeks. Living in the West Texas Panhandle, I'm used to wind - but it sure is getting on my last nerve lately.
It may be because things are stressful at work. One of my staff left at the end of March, and I'm having to do part of her job as well as mine. Part of me loves it - I'm getting to advise students, and I love working with them. That part of me is having a ball. But the other part of me - the part that remembers that I'm fighting a sneaky type of cancer - knows that I'm putting in too many hours at work, and worrying too much about whether the students are getting the attention they deserve in a timely manner. That side is also pretty concerned with how in the world am I going to keep up with my regular job at the same time.
So there is that.
There is also my ever-present worry about my health - when we got my blood test results back at my last treatment, I only had one result that wasn't normal. Somehow, all of my blood work has improved over the last few weeks. You would think this would make me happy. As a worrywart, instead all it does is make me wonder - if it's not kicking my blood counts down, and not making my hair fall out, is it killing the cancer cells like it's supposed to?
Yeah yeah - quit looking a gift horse in the mouth, and just be grateful. Easier said than done.
Of course, it might be that my finger tips are starting to hurt more and more the longer I receive treatment. My nails are shot - full of ridges and blotches, and I'm pretty sure a couple of them intend to fall off in a matter of weeks. It's really not a side effect I'm in the mood for, but it is a possibility with the Taxol.
Or maybe it's because the Dallas Stars are getting their butts kicked by those damn Ducks tonight.
I'm struggling with envy right now. More and more I am hearing of ovarian cancer patients that were Stage IV at diagnosis as I was - that went into full remission - and there are more and more of them that stay in remission for years at a time. And I envy them - oh how I envy them. Remission! That glorious state of being where you can believe that you have beaten the beast. That you will not die in a year. Or two. Or three. Instead you will be the miracle...the statistic breaker...the one who lives 10 years and beyond.
I so wanted to go into a full remission. When I read those stories I feel cheated. Why didn't *I* get a full remission? Why didn't *I* get a year - or two or ten - of remission? Of life without chemo and constipation and nausea and steroid weight gain and no eye lashes and tubes? Why why why???
I don't know why. And I certainly don't know why NOW I'm fighting the green monster. I didn't spend that first year wondering why I got ovarian cancer. It was the luck of the draw - and bad genetics. It is what it is. It did no good wasting time on wondering why. I'm not sure why I'm struggling with it now.
I wonder if it's just not my mind's way of avoiding the real issue - what comes next? I'll be switching to a new doctor and treatment center this summer, and taking a chemo break. Instead of looking forward to it, I'm kind of dreading it. For two months this summer, I won't be getting treatment. The plan is to get my last tube removed, and to get some dental work done, and to give my body a break. It should be something to look forward to, but all I can do is think about what will happen without the chemo - the last time I had a chemo break, my numbers started going up immediately. Is it going to happen that way again? Is switching doctors a mistake? Will I be as happy with the new treatment center as I was with the one I use now? Are the chairs as comfortable? Will they bring me drinks like they do now? Will they pay as close attention as the nurses do at my current center?
Is all I have to look forward to is a lifetime of chemo and bloody noses in the morning and painful finger tips?
I don't want to be envious of those who celebrate their years of remission. I want to be happy for them, and look at them as reason to hope. But somehow these ugly envious thoughts creep into my head instead, and I don't know how to stop them. I try to be grateful I'm still here - 18 months since my diagnosis. I've already beaten some odds. It's my intent to beat even more. To be one of those that declares I'm Still Here - 5 years from diagnosis! 10 years from diagnosis! 15! 20!
*sigh* I hope I'm not fooling myself.
It may be because things are stressful at work. One of my staff left at the end of March, and I'm having to do part of her job as well as mine. Part of me loves it - I'm getting to advise students, and I love working with them. That part of me is having a ball. But the other part of me - the part that remembers that I'm fighting a sneaky type of cancer - knows that I'm putting in too many hours at work, and worrying too much about whether the students are getting the attention they deserve in a timely manner. That side is also pretty concerned with how in the world am I going to keep up with my regular job at the same time.
So there is that.
There is also my ever-present worry about my health - when we got my blood test results back at my last treatment, I only had one result that wasn't normal. Somehow, all of my blood work has improved over the last few weeks. You would think this would make me happy. As a worrywart, instead all it does is make me wonder - if it's not kicking my blood counts down, and not making my hair fall out, is it killing the cancer cells like it's supposed to?
Yeah yeah - quit looking a gift horse in the mouth, and just be grateful. Easier said than done.
Of course, it might be that my finger tips are starting to hurt more and more the longer I receive treatment. My nails are shot - full of ridges and blotches, and I'm pretty sure a couple of them intend to fall off in a matter of weeks. It's really not a side effect I'm in the mood for, but it is a possibility with the Taxol.
Or maybe it's because the Dallas Stars are getting their butts kicked by those damn Ducks tonight.
I'm struggling with envy right now. More and more I am hearing of ovarian cancer patients that were Stage IV at diagnosis as I was - that went into full remission - and there are more and more of them that stay in remission for years at a time. And I envy them - oh how I envy them. Remission! That glorious state of being where you can believe that you have beaten the beast. That you will not die in a year. Or two. Or three. Instead you will be the miracle...the statistic breaker...the one who lives 10 years and beyond.
I so wanted to go into a full remission. When I read those stories I feel cheated. Why didn't *I* get a full remission? Why didn't *I* get a year - or two or ten - of remission? Of life without chemo and constipation and nausea and steroid weight gain and no eye lashes and tubes? Why why why???
I don't know why. And I certainly don't know why NOW I'm fighting the green monster. I didn't spend that first year wondering why I got ovarian cancer. It was the luck of the draw - and bad genetics. It is what it is. It did no good wasting time on wondering why. I'm not sure why I'm struggling with it now.
I wonder if it's just not my mind's way of avoiding the real issue - what comes next? I'll be switching to a new doctor and treatment center this summer, and taking a chemo break. Instead of looking forward to it, I'm kind of dreading it. For two months this summer, I won't be getting treatment. The plan is to get my last tube removed, and to get some dental work done, and to give my body a break. It should be something to look forward to, but all I can do is think about what will happen without the chemo - the last time I had a chemo break, my numbers started going up immediately. Is it going to happen that way again? Is switching doctors a mistake? Will I be as happy with the new treatment center as I was with the one I use now? Are the chairs as comfortable? Will they bring me drinks like they do now? Will they pay as close attention as the nurses do at my current center?
Is all I have to look forward to is a lifetime of chemo and bloody noses in the morning and painful finger tips?
I don't want to be envious of those who celebrate their years of remission. I want to be happy for them, and look at them as reason to hope. But somehow these ugly envious thoughts creep into my head instead, and I don't know how to stop them. I try to be grateful I'm still here - 18 months since my diagnosis. I've already beaten some odds. It's my intent to beat even more. To be one of those that declares I'm Still Here - 5 years from diagnosis! 10 years from diagnosis! 15! 20!
*sigh* I hope I'm not fooling myself.
Wednesday, April 16, 2014
Debbie
Sara. Debbie. Becky. Allison. Amy. Dr. S. Dr. L. Dr. G. Nancy.
Lynn's mom. Megan's mom. L. M. The sweet lady who likes my
scarves. The man who likes to gamble. The sweet man who reminds me of
Angie's dad from hockey. The man Monty knew from his old job. The
professor from BA who's name I've forgotten. The man who has had all the chemo. The sweet lady with the
trees. The lady from WalMart. And myself.
When I was diagnosed, I didn't really know anyone who had ovarian cancer. There was one lady who was a friend of a friend that I talked to on the phone once, but once I switch doctor's to a regular oncologist, I was just one of many cancer patients with a wide range of types of cancer. While Sara had some similar symptoms to mine, there are some symptoms that are specific to ovarian cancer - and I had no idea if it was really normal or not. It took me a long time to find any support groups online, and until I found the message board on Inspire.com, I couldn't find any groups on Facebook either.
It was a lonely time.
I got through it, but when I had my first reaction to carbo this year, I finally met another ovarian cancer patient who was also in her first recurrence. We both had reactions to carbo on the same day, had second reactions when our doctor tried to de-sensitize us 3 weeks later, and are now currently on the same weekly Taxol/every other week Avastin schedule. We have treatment on the same day, and odd as it may seem, it's nice to have someone to visit with every week - to compare our lack of side effects, our energy levels, who's hair is growing back quicker (woohoo - I win on that one so far).
Debbie's experience is different from mine. Her cancer was a surprise found during a hysterectomy. It wasn't as advanced stage as mine. We had the same front line treatment, but she had a little over a year before she recurred. And her recurrence is in her liver and viewable on CT scans - unlike mine that was found via a rising CA-125 and the return of ascites. They've never been able to see anything on the CT scans. She's also responding well to our Taxol/Avastin combo - her tumor is shrinking, and she will likely have surgery to remove it in a month or so. But she's my chemo buddy - and I'm going to miss her when I switch treatment centers this summer.
We share a love of gardening, and living in the country. We share a craptastic diagnosis. She's tough as nails though - while I rely quite a bit on my husband and sons to get some of the more strenuous gardening work done right now, Debbie does it all herself. I don't know how she does it - maybe since she's not working, it gives her more energy to do it. And while I have gone scarfless for weeks now, she still wears a wig - a great looking one to be sure, but a wig none the less. She always has all of her makeup on, and actually drives herself home after treatment each week.
I'm asking that you all add Debbie to your prayer list for a few weeks. I'd love to hear from her in a month or two that your prayers have led to her tumor shrinking enough that she *doesn't* have to have surgery. Wouldn't that be awesome?
When I was diagnosed, I didn't really know anyone who had ovarian cancer. There was one lady who was a friend of a friend that I talked to on the phone once, but once I switch doctor's to a regular oncologist, I was just one of many cancer patients with a wide range of types of cancer. While Sara had some similar symptoms to mine, there are some symptoms that are specific to ovarian cancer - and I had no idea if it was really normal or not. It took me a long time to find any support groups online, and until I found the message board on Inspire.com, I couldn't find any groups on Facebook either.
It was a lonely time.
I got through it, but when I had my first reaction to carbo this year, I finally met another ovarian cancer patient who was also in her first recurrence. We both had reactions to carbo on the same day, had second reactions when our doctor tried to de-sensitize us 3 weeks later, and are now currently on the same weekly Taxol/every other week Avastin schedule. We have treatment on the same day, and odd as it may seem, it's nice to have someone to visit with every week - to compare our lack of side effects, our energy levels, who's hair is growing back quicker (woohoo - I win on that one so far).
Debbie's experience is different from mine. Her cancer was a surprise found during a hysterectomy. It wasn't as advanced stage as mine. We had the same front line treatment, but she had a little over a year before she recurred. And her recurrence is in her liver and viewable on CT scans - unlike mine that was found via a rising CA-125 and the return of ascites. They've never been able to see anything on the CT scans. She's also responding well to our Taxol/Avastin combo - her tumor is shrinking, and she will likely have surgery to remove it in a month or so. But she's my chemo buddy - and I'm going to miss her when I switch treatment centers this summer.
We share a love of gardening, and living in the country. We share a craptastic diagnosis. She's tough as nails though - while I rely quite a bit on my husband and sons to get some of the more strenuous gardening work done right now, Debbie does it all herself. I don't know how she does it - maybe since she's not working, it gives her more energy to do it. And while I have gone scarfless for weeks now, she still wears a wig - a great looking one to be sure, but a wig none the less. She always has all of her makeup on, and actually drives herself home after treatment each week.
I'm asking that you all add Debbie to your prayer list for a few weeks. I'd love to hear from her in a month or two that your prayers have led to her tumor shrinking enough that she *doesn't* have to have surgery. Wouldn't that be awesome?
Thursday, March 20, 2014
Tired
I mentioned the other day that I was having a hard time finding something to blog about. The fact is, I'm just avoiding blogging because I don't have super happy stuff to blog about. I've been doing chemo since last October, and frankly, I'm tired.
I'm tired of spending every Friday at the cancer center. I'm tired of being constipated for 5 days out of every 7. I'm tired of constantly having to wipe or blow my nose due to the Avastin. I'm tired of the taste of blood in my mouth from all that drainage. I'm tired of constantly worrying if the chemo is working, if I'm going to go into remission, if that weird pain in my chest another blood clot or a tumor or just a weird twinge. I'm tired of the cellulite that has taken residence on my thighs because I don't have the energy to work out every day. I'm tired of having to draw on eyebrows so I don't like a boy. I'm tired of having short gray hair. I'm tired of not being able to sleep more than 4 or 5 hours at a stretch. I'm tired of having circles under my eyes so dark that it truly looks like my husband tuned me up. I'm tired of gaining weight, of hot flashes, of food tasting too salty or too spicy, of the constant craving for chocolate. I'm tired of trying to brave, inspirational, and chipper.
I am so very tired of having cancer.
I know I could have it so much worse than I do. I have family and friends that love me and support me. I have a job that provides me with insurance that has made all this treatment possible. Sometimes I feel like such a whiner for feeling this way. But even if you're not at death's door, after a while - having cancer wears on you.
Those who haven't had cancer - or haven't had dealings with someone with late stage cancer - look at me and see that I'm feeling pretty good compared to a year ago and think that my battle is over. But my battle may never be over. I may never go into a full remission. I might - but the odds are against me. Sometimes I think people don't know how to deal with someone like me - the cancer patient who can't claim they are cured.
I'm not sure I'd want to hang out with someone who just can't do the things she used to. But I wish I knew of some way to tell the people I don't hear from much anymore that they are missed. That I'm sorry that I can't just go back to who I used to be. My life has changed forever. I will never again be the chick who can party until the wee hours, or that can spend Sunday morning loading a pickup truck with load after load of hay.
I wish I knew how to tell them that I miss that chick too.
I've said before it's not all moonlight and roses. I'm not helping anyone if I only post when I'm all happy and chipper. I would hate for someone to come across this blog and see nothing but unicorns and rainbows and get down on themselves because they are having more blue days than they know what to do with and feel like they're doing this wrong. There is no wrong - we all have to deal with it in our own way. And I bet I'm not the only one who gets so damn tired of having cancer. It helps me to write it out - it's a way for me to figure out why I feel the way I do, and a way to express those feelings and get them out of my system. If it helps someone else someday, even better.
It's unrelenting, this having cancer thing. It never goes away. Not for me, and not for my family. I wonder if it would be easier if there was any real hope that I could actually be cured. I'll never really know - I'm to look at ovarian cancer as a chronic disease that I can treat but not cure. Like diabetes or rheumatoid arthritis. I'm doing my best to find a way to accept that gracefully.
But damn. I'm just....tired.
I'm tired of spending every Friday at the cancer center. I'm tired of being constipated for 5 days out of every 7. I'm tired of constantly having to wipe or blow my nose due to the Avastin. I'm tired of the taste of blood in my mouth from all that drainage. I'm tired of constantly worrying if the chemo is working, if I'm going to go into remission, if that weird pain in my chest another blood clot or a tumor or just a weird twinge. I'm tired of the cellulite that has taken residence on my thighs because I don't have the energy to work out every day. I'm tired of having to draw on eyebrows so I don't like a boy. I'm tired of having short gray hair. I'm tired of not being able to sleep more than 4 or 5 hours at a stretch. I'm tired of having circles under my eyes so dark that it truly looks like my husband tuned me up. I'm tired of gaining weight, of hot flashes, of food tasting too salty or too spicy, of the constant craving for chocolate. I'm tired of trying to brave, inspirational, and chipper.
I am so very tired of having cancer.
I know I could have it so much worse than I do. I have family and friends that love me and support me. I have a job that provides me with insurance that has made all this treatment possible. Sometimes I feel like such a whiner for feeling this way. But even if you're not at death's door, after a while - having cancer wears on you.
Those who haven't had cancer - or haven't had dealings with someone with late stage cancer - look at me and see that I'm feeling pretty good compared to a year ago and think that my battle is over. But my battle may never be over. I may never go into a full remission. I might - but the odds are against me. Sometimes I think people don't know how to deal with someone like me - the cancer patient who can't claim they are cured.
I'm not sure I'd want to hang out with someone who just can't do the things she used to. But I wish I knew of some way to tell the people I don't hear from much anymore that they are missed. That I'm sorry that I can't just go back to who I used to be. My life has changed forever. I will never again be the chick who can party until the wee hours, or that can spend Sunday morning loading a pickup truck with load after load of hay.
I wish I knew how to tell them that I miss that chick too.
I've said before it's not all moonlight and roses. I'm not helping anyone if I only post when I'm all happy and chipper. I would hate for someone to come across this blog and see nothing but unicorns and rainbows and get down on themselves because they are having more blue days than they know what to do with and feel like they're doing this wrong. There is no wrong - we all have to deal with it in our own way. And I bet I'm not the only one who gets so damn tired of having cancer. It helps me to write it out - it's a way for me to figure out why I feel the way I do, and a way to express those feelings and get them out of my system. If it helps someone else someday, even better.
It's unrelenting, this having cancer thing. It never goes away. Not for me, and not for my family. I wonder if it would be easier if there was any real hope that I could actually be cured. I'll never really know - I'm to look at ovarian cancer as a chronic disease that I can treat but not cure. Like diabetes or rheumatoid arthritis. I'm doing my best to find a way to accept that gracefully.
But damn. I'm just....tired.
Monday, March 17, 2014
Sara
(In case you haven't noticed, I've had a hard time coming up with something to write about lately. It's all the same ole same ole lately. So I thought I would share with everyone those that I pray for and why.)
Sara. Debbie. Becky. Allison. Amy. Dr. S. Dr. G. Nancy. Lynn's mom. Megan's mom. L. M. The sweet lady who likes my scarves. The man who likes to gamble. The sweet man who reminds me of Angie's dad from hockey. The man Monty knew from his old job. The professor from BA who's name I've forgotten. The sweet lady with the trees. The lady from WalMart. And myself.
Sara is married to one of my faculty members. When he was originally hired, back when I was hugely pregnant with my eldest, I met Sara when she came to town to find a place for them to live when they moved to Mid-Sized City. She brought with her their 6 month old daughter and we bonded over impending motherhood. She had two daughters, and I two sons, and we both loved them like crazy. She had wonderful advice for a new mom, and the sweetest personality.
Over the years, we would see each other at various departmental parties, and talk on the phone when she would call up here to talk to her husband. I've always thought the world of her. It's been nearly two years since she went into a hospital to have some tests run to see why she was having some gastro-intestinal issues, and came out with a diagnosis of advanced pancreatic cancer. When her husband told me, I was devastated, because all I knew was that there was no cure. I didn't expect her to finish out the year.
I often talked of going to see her while she was undergoing treatment. Of calling her when she was stuck at home recovering. But I never did. I'm not sure why - was it because I didn't know how to deal with her diagnosis? Was it because I was afraid? I'm not sure, but I'm so ashamed of the coward I was.
Later that year, when I was diagnosed with my own advanced staged cancer, I was even more ashamed. Sara called me frequently to see how I was doing, to offer me support as I went through chemo, as I recovered. She offered me ideas as to what I could eat, and shared that she too spend months sleeping in a recliner because she just couldn't tolerate sleeping in a bed. She made me feel normal. She made me feel less alone.
Sara is doing great right now. She sees a doctor at MD Anderson that specializes in her type of pancreatic cancer, and for now, her disease is stable. She is a constant inspiration to me as I go through my own cancer journey, and is always the first person on my list of those I pray for healing. If you are so moved, would you consider adding Sara to your prayers for a time? She is a woman of faith, with an open heart. She doesn't kid herself about what's ahead for her....but the way she handles the day to day and the future to come makes me proud to call her friend.
Sara. Debbie. Becky. Allison. Amy. Dr. S. Dr. G. Nancy. Lynn's mom. Megan's mom. L. M. The sweet lady who likes my scarves. The man who likes to gamble. The sweet man who reminds me of Angie's dad from hockey. The man Monty knew from his old job. The professor from BA who's name I've forgotten. The sweet lady with the trees. The lady from WalMart. And myself.
Sara is married to one of my faculty members. When he was originally hired, back when I was hugely pregnant with my eldest, I met Sara when she came to town to find a place for them to live when they moved to Mid-Sized City. She brought with her their 6 month old daughter and we bonded over impending motherhood. She had two daughters, and I two sons, and we both loved them like crazy. She had wonderful advice for a new mom, and the sweetest personality.
Over the years, we would see each other at various departmental parties, and talk on the phone when she would call up here to talk to her husband. I've always thought the world of her. It's been nearly two years since she went into a hospital to have some tests run to see why she was having some gastro-intestinal issues, and came out with a diagnosis of advanced pancreatic cancer. When her husband told me, I was devastated, because all I knew was that there was no cure. I didn't expect her to finish out the year.
I often talked of going to see her while she was undergoing treatment. Of calling her when she was stuck at home recovering. But I never did. I'm not sure why - was it because I didn't know how to deal with her diagnosis? Was it because I was afraid? I'm not sure, but I'm so ashamed of the coward I was.
Later that year, when I was diagnosed with my own advanced staged cancer, I was even more ashamed. Sara called me frequently to see how I was doing, to offer me support as I went through chemo, as I recovered. She offered me ideas as to what I could eat, and shared that she too spend months sleeping in a recliner because she just couldn't tolerate sleeping in a bed. She made me feel normal. She made me feel less alone.
Sara is doing great right now. She sees a doctor at MD Anderson that specializes in her type of pancreatic cancer, and for now, her disease is stable. She is a constant inspiration to me as I go through my own cancer journey, and is always the first person on my list of those I pray for healing. If you are so moved, would you consider adding Sara to your prayers for a time? She is a woman of faith, with an open heart. She doesn't kid herself about what's ahead for her....but the way she handles the day to day and the future to come makes me proud to call her friend.
Sunday, January 26, 2014
Gratitude. I've Got It.
My goodness - what a difference a week can make.
Last Sunday, I was still full of worry and doubt about what was going to happen with my treatment. I felt pretty good, and was dreading feeling bad this week. Instead, I'm sitting here feeling pretty darn good today!
Since this new regimen consists of me receiving a smaller dose of Taxol every week instead of a big ole dose every three weeks, I haven't really had any nausea and very little fatigue. This weekend we have purchased a new RAV4 for me to drive, gotten Christmas decorations taken down and put away, I've gone to church, and out to eat for lunch, worked on laundry and helped eldest son re-organize his room.
I don't think I've had this active of a weekend since summer.
Of course, I didn't do all this by myself. The boys helped take the Christmas stuff down. Most of my contribution to re-organizing E's room consisted of me sitting in a chair and suggesting/directing. But I'm feeling good. I don't have the discomfort I've had around my torso the last few months. I'm not constantly tired. And praise Jesus Halleluah, I'm not nauseous. I'm able to eat normally.
I don't kid myself. I know that next weekend may be a different story once I get Avastin. But today, right now, I think I should be able to go to work tomorrow. I think that I won't miss but one day a week with this weekly chemo. I think I just might be able to have a greater quality of life.
Heck - I may be able to nag my children to do more chores if I'm feeling this good!
*gasp* Maybe I'll even get my house clean!
Pfft. Even if I don't. Even if all I do is manage to keep up with the laundry and the kids' schedule, I'll be happy. I'll take it one day at a time. I'll enjoy every minute of feeling practically normal. And I'll be grateful for it.
Now - if only that hair will grow back....
Last Sunday, I was still full of worry and doubt about what was going to happen with my treatment. I felt pretty good, and was dreading feeling bad this week. Instead, I'm sitting here feeling pretty darn good today!
Since this new regimen consists of me receiving a smaller dose of Taxol every week instead of a big ole dose every three weeks, I haven't really had any nausea and very little fatigue. This weekend we have purchased a new RAV4 for me to drive, gotten Christmas decorations taken down and put away, I've gone to church, and out to eat for lunch, worked on laundry and helped eldest son re-organize his room.
I don't think I've had this active of a weekend since summer.
Of course, I didn't do all this by myself. The boys helped take the Christmas stuff down. Most of my contribution to re-organizing E's room consisted of me sitting in a chair and suggesting/directing. But I'm feeling good. I don't have the discomfort I've had around my torso the last few months. I'm not constantly tired. And praise Jesus Halleluah, I'm not nauseous. I'm able to eat normally.
I don't kid myself. I know that next weekend may be a different story once I get Avastin. But today, right now, I think I should be able to go to work tomorrow. I think that I won't miss but one day a week with this weekly chemo. I think I just might be able to have a greater quality of life.
Heck - I may be able to nag my children to do more chores if I'm feeling this good!
*gasp* Maybe I'll even get my house clean!
Pfft. Even if I don't. Even if all I do is manage to keep up with the laundry and the kids' schedule, I'll be happy. I'll take it one day at a time. I'll enjoy every minute of feeling practically normal. And I'll be grateful for it.
Now - if only that hair will grow back....
Friday, January 24, 2014
Pow! Right in the kisser!
(Praise God from whom all blessings flow. Praise Him all creatures here below. Praise Him above, ye heavenly host. Praise Father, Son and Holy Ghost)
When I first started going to the little Methodist church in Hicksville, I first heard the doxology. I had heard the phrases before, but not sung. Something about those words seemed to speak to my soul. I've learned them and sang them and this morning they are echoing in my heart.
Last night I found out my scans were clear - other than the fluid around my lungs, there is no other visible evidence of disease. This morning, I was told my CA-125 is down to 37. That's just 2 over normal. I also found out that my insurance has overturned its decision on my receiving weekly Taxol with Avastin.
I am flabbergasted. And excited. And nervous. And grateful. And terrified.
I won't get Avastin until next week. This week - right now in fact - I'm going to get a lower dose of Taxol. Next week I'll get both. Week 3 - Taxol, then both week 4. I've been approved for this regimen for the next 3 months.
I'm getting less anti-nausea meds because the expectation is I'll have less nausea. I may get some of my hair back. The Avastin, however, can cause me to be more fatigued, have high blood pressure, or headaches or nose bleeds. But we are hoping it will won't do all that.
Three weeks ago after I reacted to the carbo for the second time, I was scared and angry and despondent. I felt doomed. I started a process that in its beginning was a way for me to find peace with everything, to find a way to be able to go gently if that was to be my future. But also to find out that if I truly believe, if I truly could "let go and let God" if I would be blessed.
Boy howdy am I feeling blessed.
Some might say that all my good news today is modern medicine at work. That may be, but I can't help but see God's hand in all this as well. When I was my most discouraged, feeling abandoned, afraid - I called out as better men than I have called out "my God! My God! Why have you forsaken me?!" And even as I started to accept that this is the struggle I've been given, and that it is nothing when compared with the others suffering, no worse than what Christ suffered on a cross all those years ago?
I have blessings rain down on me. As if God is saying to me the words that are the backbone of the Beth Moore study I'm doing:
God is who he says he is.
God can do what he says he can do.
I am who God says I am.
I can do all things through Christ.
God's word is alive and active in me.
Maybe it's just modern medicine. I choose to believe that I'm being sent a message. And I think finally it's one I'm ready to hear.
Miracles indeed.
When I first started going to the little Methodist church in Hicksville, I first heard the doxology. I had heard the phrases before, but not sung. Something about those words seemed to speak to my soul. I've learned them and sang them and this morning they are echoing in my heart.
Last night I found out my scans were clear - other than the fluid around my lungs, there is no other visible evidence of disease. This morning, I was told my CA-125 is down to 37. That's just 2 over normal. I also found out that my insurance has overturned its decision on my receiving weekly Taxol with Avastin.
I am flabbergasted. And excited. And nervous. And grateful. And terrified.
I won't get Avastin until next week. This week - right now in fact - I'm going to get a lower dose of Taxol. Next week I'll get both. Week 3 - Taxol, then both week 4. I've been approved for this regimen for the next 3 months.
I'm getting less anti-nausea meds because the expectation is I'll have less nausea. I may get some of my hair back. The Avastin, however, can cause me to be more fatigued, have high blood pressure, or headaches or nose bleeds. But we are hoping it will won't do all that.
Three weeks ago after I reacted to the carbo for the second time, I was scared and angry and despondent. I felt doomed. I started a process that in its beginning was a way for me to find peace with everything, to find a way to be able to go gently if that was to be my future. But also to find out that if I truly believe, if I truly could "let go and let God" if I would be blessed.
Boy howdy am I feeling blessed.
Some might say that all my good news today is modern medicine at work. That may be, but I can't help but see God's hand in all this as well. When I was my most discouraged, feeling abandoned, afraid - I called out as better men than I have called out "my God! My God! Why have you forsaken me?!" And even as I started to accept that this is the struggle I've been given, and that it is nothing when compared with the others suffering, no worse than what Christ suffered on a cross all those years ago?
I have blessings rain down on me. As if God is saying to me the words that are the backbone of the Beth Moore study I'm doing:
God is who he says he is.
God can do what he says he can do.
I am who God says I am.
I can do all things through Christ.
God's word is alive and active in me.
Maybe it's just modern medicine. I choose to believe that I'm being sent a message. And I think finally it's one I'm ready to hear.
Miracles indeed.
Tuesday, January 21, 2014
2014
Hmm. I never imagined that my first post of 2014 would be on the 21st. It's been a weird month for me. At the beginning of the month, I had another chemo treatment, and we tried once again to give me carbo - extra steroids, and more benedryl - in hopes to de-sensitize me so that I can still get one of the most effective chemos for my type of cancer. Alas, within minutes of starting the carbo, my tongue started tingling again, my heart started racing, and even though they were watching me and stopped it immediately, my nose swelled shut again.
*sigh*
So - I don't know if I'll ever have carbo again. And that scares the crap out of me. My CA 125 only went down 6 points between the last two chemo sessions, and I worry that means without the full carbo infusion, we're not beating the cancer back as much as we'd like. I haven't re-developed acites in my abdomen, but I still have the fluid around my lungs. I thought we had that on the run, but the last time my husband drained it, it was significantly more fluid than the previous time. In addition to all that, I've had much more discomfort around my middle the last few weeks.
Whine whine whine.
Tomorrow I'll be having CT scans of chest, abdomen and pelvis. So maybe we can see what is exactly going on in there. I haven't had scans since last October, so I am very curious as to how things look. I keep hoping that once again it'll be a scan with no new evidence of metastic disease. Wish me luck.
I've struggled keeping a positive attitude the last couple of months. Having fevers every time I hit those compromised immunity days every round of chemo is a double whammy of feeling like crap and worrying that the doctors are missing something when they try to figure out what is causing the fevers. This last time I was prescribed preventative antibiotics in hopes I wouldn't have a fever. It certainly delayed the fever, and it was just a low grade fever that only lasted a few days, but I still got a fever. Again.
This constant feeling like crap wears on you. It frustrates me to no end to only have a few days out of every 21 that I feel like doing anything. I miss way more work than I'd like, but there are just some days I can't make it in. I still feel like I'm letting down not only my boss, but my staff and faculty as well. I've been told that some of my faculty are complaining. But what can I do? I'm trying my hardest to be at work as often as I can. To get as much done while I am in the office as possible.
I used to rarely miss work. I rarely got sick, and I had to be pretty sick before I called in. I wasn't the employee who called in with a sinus headache or because I had cramps. If I called in, I was most likely running a fever or hurling. Now I call in because I'm so fatigued I can barely function, or because I'm so nauseated from chemo I can't comprehend trying to drive into town.
Part of this adjusting to the new normal I guess. Trying not to assign scary meanings to every ache, pain, lump or spot. Trying to remember that God's plan doesn't necessarily mean I'm supposed to be his example of grace under pressure - or anything worse.
Those who know me well know that I have a strong faith in God. During this recurrence, I've struggled holding onto that. I've struggled with believing that there are still miracles to be had. I want to believe that - of course I do. But I feel like for some reason that's God's answer to my prayers might be no.
To help with that, I've been working my way through a Beth Moore book. A devotional of sorts. I'll be honest - I have it on my kindle because it was free this month. But working through it these last couple of weeks has been fascinating - giving me a different look on how my relationship with God works - and me questioning if I've been putting enough into it.
For those of y'all who don't buy into God, or who worship a different diety, feel free to move skip all this rambling of God and faith. It won't hurt my feelings a bit. This blog is an exploration of how I'm working my way through my cancer and my life in general, so there's gonna be some God talk occasionally.
Anyhoo - that's what's going on with me. As usual, January sucks. My least favorite month. Chemo again this Friday. Not sure what they are going to do - according to my oncology nurse, we'll find out Friday. I'm not real sure I'm ok with that, but it doesn't seem like I have much choice. Keep me in your thoughts, and I hope your January is going well.
I'll just be glad when it's February again.
*sigh*
So - I don't know if I'll ever have carbo again. And that scares the crap out of me. My CA 125 only went down 6 points between the last two chemo sessions, and I worry that means without the full carbo infusion, we're not beating the cancer back as much as we'd like. I haven't re-developed acites in my abdomen, but I still have the fluid around my lungs. I thought we had that on the run, but the last time my husband drained it, it was significantly more fluid than the previous time. In addition to all that, I've had much more discomfort around my middle the last few weeks.
Whine whine whine.
Tomorrow I'll be having CT scans of chest, abdomen and pelvis. So maybe we can see what is exactly going on in there. I haven't had scans since last October, so I am very curious as to how things look. I keep hoping that once again it'll be a scan with no new evidence of metastic disease. Wish me luck.
I've struggled keeping a positive attitude the last couple of months. Having fevers every time I hit those compromised immunity days every round of chemo is a double whammy of feeling like crap and worrying that the doctors are missing something when they try to figure out what is causing the fevers. This last time I was prescribed preventative antibiotics in hopes I wouldn't have a fever. It certainly delayed the fever, and it was just a low grade fever that only lasted a few days, but I still got a fever. Again.
This constant feeling like crap wears on you. It frustrates me to no end to only have a few days out of every 21 that I feel like doing anything. I miss way more work than I'd like, but there are just some days I can't make it in. I still feel like I'm letting down not only my boss, but my staff and faculty as well. I've been told that some of my faculty are complaining. But what can I do? I'm trying my hardest to be at work as often as I can. To get as much done while I am in the office as possible.
I used to rarely miss work. I rarely got sick, and I had to be pretty sick before I called in. I wasn't the employee who called in with a sinus headache or because I had cramps. If I called in, I was most likely running a fever or hurling. Now I call in because I'm so fatigued I can barely function, or because I'm so nauseated from chemo I can't comprehend trying to drive into town.
Part of this adjusting to the new normal I guess. Trying not to assign scary meanings to every ache, pain, lump or spot. Trying to remember that God's plan doesn't necessarily mean I'm supposed to be his example of grace under pressure - or anything worse.
Those who know me well know that I have a strong faith in God. During this recurrence, I've struggled holding onto that. I've struggled with believing that there are still miracles to be had. I want to believe that - of course I do. But I feel like for some reason that's God's answer to my prayers might be no.
To help with that, I've been working my way through a Beth Moore book. A devotional of sorts. I'll be honest - I have it on my kindle because it was free this month. But working through it these last couple of weeks has been fascinating - giving me a different look on how my relationship with God works - and me questioning if I've been putting enough into it.
For those of y'all who don't buy into God, or who worship a different diety, feel free to move skip all this rambling of God and faith. It won't hurt my feelings a bit. This blog is an exploration of how I'm working my way through my cancer and my life in general, so there's gonna be some God talk occasionally.
Anyhoo - that's what's going on with me. As usual, January sucks. My least favorite month. Chemo again this Friday. Not sure what they are going to do - according to my oncology nurse, we'll find out Friday. I'm not real sure I'm ok with that, but it doesn't seem like I have much choice. Keep me in your thoughts, and I hope your January is going well.
I'll just be glad when it's February again.
Wednesday, December 18, 2013
A Little of This, A Little of That
Yup - I'm still kicking.
I haven't blogged in awhile - partly because we have somehow lost the power cord for my laptop. I know we put it up somewhere, but for the life of me, I can't remember where. We just recently discovered that the cord for my husband's laptop will work on mine as well, so at least I finally got it charged again.
The other reason I haven't blogged is because I just haven't been my usual cheerful self. Every time I thought about blogging, it was basically a whinefest, and honestly, no one wants to read that. So instead I look through Facebook, and read other blogs, and surf through Pinterest, and basically avoid blogging. Tonight I had to get on my laptop to look up directions for a super secret Christmas project because Yikes! Christmas is a week away. I figured while I was on here, might as well ramble a while.
Chemo is ongoing. Last Friday was my third chemo, and darned if I didn't have a reaction to the carbo out of no where. It was scary, and no fun, and totally messed up my sleep habits last weekend thanks to the extra Benedryl and extra steroids. Now my sleep schedule is back on track, but the Neulasta shot I get after chemo to build my white cell counts is making my ankles and knees ache something fierce, so that's made it harder to sleep. (see? WHINEFEST!) My next chemo is scheduled for early January, and I don't know if I'll find out before then what we're going to do about that carbo reaction. Will they just slow the carbo infusion down? Or are we done with carbo? What are our other options? We found out today that no one has done anything about the appeal for the recommended chemo that was denied by my insurance. I hate not knowing what is going on, and I'm not scheduled to see my oncologist until the same day I'm supposed to have my next round of chemo. This is not how I planned on spending my Christmas break!
Anyhoo. That's where we are on that. In better news, my CA 125 has dropped down to 55, the ascites went away about a week after the first chemo, and we're draining less than 60 mls a day from around my lung. The chemo is working, and seems to be working pretty well. I hope we don't lose any momentum.
My oldest son recently moved back home, and we are all re-learning how to live together. It's hard to remember that he's spent the last year or so not having to answer to anyone, or deal with a curfew. I'm sure it's hard for him to deal with not staying out all night because his worry wart mama doesn't sleep well until he's home. We're figuring it out. So far we've managed to avoid any huge scream fests, so I guess it's going pretty well. It is nice having him home. I missed him.
I'm so not ready for Christmas. Well - I'm almost ready for Christmas. I have about 85% of what I need to finish everything up and no motivation to finish it up. I just pile all that stuff under the tree, and tell myself that tomorrow I'll wrap some presents or put some things together. So far - no luck. I'm running out of time though - someone convince me to get going so I'm not doing everything Christmas Eve!
My beloved husband ruined my present for him. I was so excited - I came up with a brilliant idea of something to get him, something I knew he'd appreciate, but he hadn't thought of asking for. I had found one at a local store, and had it stashed in my truck. Then I came home yesterday and damned if he hadn't bought one for himself. Men. No idea what to get him now, plus I have to return the one I bought. Hmph. If anyone has any brilliant ideas what to get a man who tends to go buy the damn things I WOULD get him for Christmas, let me know. He may end up with nothing but Christmas cookies. Or coal.
All in all, things are pretty good. But going through chemo really messes with my energy levels, and the temps the week after are a pain. We are hoping that I won't have that this time. I'm doing my best to enjoy the season. To enjoy this time with my family and friends. I hope you all are doing the same.
I haven't blogged in awhile - partly because we have somehow lost the power cord for my laptop. I know we put it up somewhere, but for the life of me, I can't remember where. We just recently discovered that the cord for my husband's laptop will work on mine as well, so at least I finally got it charged again.
The other reason I haven't blogged is because I just haven't been my usual cheerful self. Every time I thought about blogging, it was basically a whinefest, and honestly, no one wants to read that. So instead I look through Facebook, and read other blogs, and surf through Pinterest, and basically avoid blogging. Tonight I had to get on my laptop to look up directions for a super secret Christmas project because Yikes! Christmas is a week away. I figured while I was on here, might as well ramble a while.
Chemo is ongoing. Last Friday was my third chemo, and darned if I didn't have a reaction to the carbo out of no where. It was scary, and no fun, and totally messed up my sleep habits last weekend thanks to the extra Benedryl and extra steroids. Now my sleep schedule is back on track, but the Neulasta shot I get after chemo to build my white cell counts is making my ankles and knees ache something fierce, so that's made it harder to sleep. (see? WHINEFEST!) My next chemo is scheduled for early January, and I don't know if I'll find out before then what we're going to do about that carbo reaction. Will they just slow the carbo infusion down? Or are we done with carbo? What are our other options? We found out today that no one has done anything about the appeal for the recommended chemo that was denied by my insurance. I hate not knowing what is going on, and I'm not scheduled to see my oncologist until the same day I'm supposed to have my next round of chemo. This is not how I planned on spending my Christmas break!
Anyhoo. That's where we are on that. In better news, my CA 125 has dropped down to 55, the ascites went away about a week after the first chemo, and we're draining less than 60 mls a day from around my lung. The chemo is working, and seems to be working pretty well. I hope we don't lose any momentum.
My oldest son recently moved back home, and we are all re-learning how to live together. It's hard to remember that he's spent the last year or so not having to answer to anyone, or deal with a curfew. I'm sure it's hard for him to deal with not staying out all night because his worry wart mama doesn't sleep well until he's home. We're figuring it out. So far we've managed to avoid any huge scream fests, so I guess it's going pretty well. It is nice having him home. I missed him.
I'm so not ready for Christmas. Well - I'm almost ready for Christmas. I have about 85% of what I need to finish everything up and no motivation to finish it up. I just pile all that stuff under the tree, and tell myself that tomorrow I'll wrap some presents or put some things together. So far - no luck. I'm running out of time though - someone convince me to get going so I'm not doing everything Christmas Eve!
My beloved husband ruined my present for him. I was so excited - I came up with a brilliant idea of something to get him, something I knew he'd appreciate, but he hadn't thought of asking for. I had found one at a local store, and had it stashed in my truck. Then I came home yesterday and damned if he hadn't bought one for himself. Men. No idea what to get him now, plus I have to return the one I bought. Hmph. If anyone has any brilliant ideas what to get a man who tends to go buy the damn things I WOULD get him for Christmas, let me know. He may end up with nothing but Christmas cookies. Or coal.
All in all, things are pretty good. But going through chemo really messes with my energy levels, and the temps the week after are a pain. We are hoping that I won't have that this time. I'm doing my best to enjoy the season. To enjoy this time with my family and friends. I hope you all are doing the same.
Saturday, November 09, 2013
Hairology
As I mentioned before, my hair started falling out while I was in the hospital this last time. It hasn't been as traumatic or heartbreaking as it was the first time. Honestly, this time it has been just annoying. Hair is getting everywhere. I had just had the thought a week or so ago that we were to the point that we weren't really vacuuming up much hair these days since we lost Evie so long ago. Trust me - as thick as my hair came back, I am certainly making up for it.
I had thought to try brushing my hair out really well each morning and evening, to get all that was loose out and maybe the constant drift of hair around me wouldn't be quite so bad. I tried that this morning before I got into the shower - hoping that maybe I wouldn't stop up the drain. Uh - no. So much came out while washing my hair that all I needed were a couple of little ears and a tail and I would have had a good sized mouse. Or two.
Ew. Totally making the hubs clean that up.
When I checked my head after my shower, I realized I now had bald spots, and gave up on the idea of waiting another day or so before having the hubs buzz it off. Now I have returned to my little old man (only now with receding hairline!) look for the duration. I kept waiting for the tears to come, but honestly? I'm just glad my scalp doesn't hurt all the time!
I mentioned on Facebook that I am grateful for perspective. When this happened last fall, I had such a hard time with it. But this year, it just doesn't seem like that big of a deal. Maybe it's because I know it's going to grow back. Sure - it'll be whiter. Maybe curlier. Hopefully still thick. But it grows back. If looking like a little old man with a receding hairline is what it takes to get back into remission, so be it. I'm down with that.
Now I have to decide for Monday - bare head with my buzz and receding hairline, or break out the scarves? I have a feeling it will be a last minute decision.
Today I'm going to watch Mid-Size University hopefully kick some butt on the football field, and do some laundry. The hubs wants to cook burgers on the grill one last time before it gets so cold later this week, and we might put up the last of the tomatoes as stewed tomatoes. I also would like to go out and see what my english peas are up to today. All in all, it's great to be out of the hospital.
Even without any hair.
I had thought to try brushing my hair out really well each morning and evening, to get all that was loose out and maybe the constant drift of hair around me wouldn't be quite so bad. I tried that this morning before I got into the shower - hoping that maybe I wouldn't stop up the drain. Uh - no. So much came out while washing my hair that all I needed were a couple of little ears and a tail and I would have had a good sized mouse. Or two.
Ew. Totally making the hubs clean that up.
When I checked my head after my shower, I realized I now had bald spots, and gave up on the idea of waiting another day or so before having the hubs buzz it off. Now I have returned to my little old man (only now with receding hairline!) look for the duration. I kept waiting for the tears to come, but honestly? I'm just glad my scalp doesn't hurt all the time!
I mentioned on Facebook that I am grateful for perspective. When this happened last fall, I had such a hard time with it. But this year, it just doesn't seem like that big of a deal. Maybe it's because I know it's going to grow back. Sure - it'll be whiter. Maybe curlier. Hopefully still thick. But it grows back. If looking like a little old man with a receding hairline is what it takes to get back into remission, so be it. I'm down with that.
Now I have to decide for Monday - bare head with my buzz and receding hairline, or break out the scarves? I have a feeling it will be a last minute decision.
Today I'm going to watch Mid-Size University hopefully kick some butt on the football field, and do some laundry. The hubs wants to cook burgers on the grill one last time before it gets so cold later this week, and we might put up the last of the tomatoes as stewed tomatoes. I also would like to go out and see what my english peas are up to today. All in all, it's great to be out of the hospital.
Even without any hair.
Thursday, November 07, 2013
Some Like it Hot
Well - hello there!
I honestly intended to blog throughout the week following my return to chemo. I can assure you that I felt pretty darn good the day after chemo, and up to around lunchtime the day after that. Then the Emend wore off and as Andy Taylor (the sherriff, not the hot dude in Duran Duran) used to say "whewwww doggy!" It took me days to recover. Just when I started to get my groove back, last Friday I started running a bit of a fever. I was determined to attend the football game because it was Senior Night, and my son is a senior. I did, however, convince MDH to drive us up there early so we could grab a parking spot near the fence and I could watch the game from the truck.
Saturday morning when I woke up I felt pretty good. I had had my belly drained on Friday, so I slept wondrfully, but I was a little achy. Like you are after having a bit of a fever. After lunch, I encouraged MDH to go ahead and head out to the deer lease and enjoy opening weekend. I felt fine! There was no reason for him to hang around the house.
*sigh*
Seriously, he had been gone less than an hour when I started feeling chilled. The first time I took my temp, it was 100. something. I had taken a tylenol, so I gave myself 30 minutes for it to take affect, then took it again.
102.5. Guess who had to call their hubby to come back home to take her to the hospital? And guess who has been in the hospital since?
For the record, they ran a ridiculous amount of tests, and never figured out what caused the fever. It was some kind of infection, because my white cell oount was elevated. At chemo nadir. But other than a slight fuzziness seen in an xray behind my heart that *might* have been the start of pneumonia, they haven't found anything. After 3 1/2 days of 102 - 103 degree fevers, tylenol every six hours, and two types of IV antibiotics, the fever started going down. As of 10 pm on day 5, I am 19 hours without a fever. I'm hoping I'll make it 24 hours, and they'll spring me tomorrow.
The best part (remember - always try to find a silver lining!) of this ordeal is getting to see so many of the wonderful oncology nurses from last year. They actually put me in the same room I had last year after my surgery. Some of the ones I loved have retired or moved on, but a huge number of them are still here, and it's been so much fun to see them again. I've also met a couple of new ones that I like just as well. Oncology nurses are awesome.
In addition to all this fun (ha!), this morning, the hair on my head started to fall out. The first time I went through it, I cried. This time I just laughed, rinsed my hands off and went on. Of course, it's so very annoying that it loves to attach itself to my electronics - then I try to wipe it off and end up swiping something off my screen. I feel for the cleaning ladies - as fast as it seems to be dropping, they might have a rug to sweep up in the morning!
I'm crossing my fingers that this week of being in the hospital doesn't push back my chemo. Currently all my numbers are in the normal range. If the fever is over (please please please) and non of the cultures grow any critters, I should be ok. But the oncologist did say he'd have to see how I'm doing next week. Keeping my fingers crossed!
So that's what is going on in my world. I had one of my staff bring me some work that I can do up here during the day because oh.my.hell there is only so much HGTV, Food Channel and SoapNet I can stand to watch. I've made a point to walk around the entire floor and nurses station before I let myself have anything fun from the patient nutrition room. I'm doing much better, and I hope to hell I never again run a temp of 103 because that's no freakin fun at all! Hoping your life has been less eventful!
I honestly intended to blog throughout the week following my return to chemo. I can assure you that I felt pretty darn good the day after chemo, and up to around lunchtime the day after that. Then the Emend wore off and as Andy Taylor (the sherriff, not the hot dude in Duran Duran) used to say "whewwww doggy!" It took me days to recover. Just when I started to get my groove back, last Friday I started running a bit of a fever. I was determined to attend the football game because it was Senior Night, and my son is a senior. I did, however, convince MDH to drive us up there early so we could grab a parking spot near the fence and I could watch the game from the truck.
Saturday morning when I woke up I felt pretty good. I had had my belly drained on Friday, so I slept wondrfully, but I was a little achy. Like you are after having a bit of a fever. After lunch, I encouraged MDH to go ahead and head out to the deer lease and enjoy opening weekend. I felt fine! There was no reason for him to hang around the house.
*sigh*
Seriously, he had been gone less than an hour when I started feeling chilled. The first time I took my temp, it was 100. something. I had taken a tylenol, so I gave myself 30 minutes for it to take affect, then took it again.
102.5. Guess who had to call their hubby to come back home to take her to the hospital? And guess who has been in the hospital since?
For the record, they ran a ridiculous amount of tests, and never figured out what caused the fever. It was some kind of infection, because my white cell oount was elevated. At chemo nadir. But other than a slight fuzziness seen in an xray behind my heart that *might* have been the start of pneumonia, they haven't found anything. After 3 1/2 days of 102 - 103 degree fevers, tylenol every six hours, and two types of IV antibiotics, the fever started going down. As of 10 pm on day 5, I am 19 hours without a fever. I'm hoping I'll make it 24 hours, and they'll spring me tomorrow.
The best part (remember - always try to find a silver lining!) of this ordeal is getting to see so many of the wonderful oncology nurses from last year. They actually put me in the same room I had last year after my surgery. Some of the ones I loved have retired or moved on, but a huge number of them are still here, and it's been so much fun to see them again. I've also met a couple of new ones that I like just as well. Oncology nurses are awesome.
In addition to all this fun (ha!), this morning, the hair on my head started to fall out. The first time I went through it, I cried. This time I just laughed, rinsed my hands off and went on. Of course, it's so very annoying that it loves to attach itself to my electronics - then I try to wipe it off and end up swiping something off my screen. I feel for the cleaning ladies - as fast as it seems to be dropping, they might have a rug to sweep up in the morning!
I'm crossing my fingers that this week of being in the hospital doesn't push back my chemo. Currently all my numbers are in the normal range. If the fever is over (please please please) and non of the cultures grow any critters, I should be ok. But the oncologist did say he'd have to see how I'm doing next week. Keeping my fingers crossed!
So that's what is going on in my world. I had one of my staff bring me some work that I can do up here during the day because oh.my.hell there is only so much HGTV, Food Channel and SoapNet I can stand to watch. I've made a point to walk around the entire floor and nurses station before I let myself have anything fun from the patient nutrition room. I'm doing much better, and I hope to hell I never again run a temp of 103 because that's no freakin fun at all! Hoping your life has been less eventful!
Thursday, October 24, 2013
What Has To Be Done
Today, I start chemo again.
My insurance finally approved the cancer regimen I had for frontline chemo, and right now I am kicked back receiving pre- meds prior to starting carbo/taxol.
The pre-meds they give seem to make me cold. When I arrived, this room seemed to be the perfect temperature. An hour later, I've pulled out my blanket because I'm freezing. It's the meds - they're room temperature and it chills us.
The massive dose of Benedryl I was given is making me seriously sleepy. If I stop sounding coherent that's why. They have just started the Taxol, which most likely will take 3 hours. Since it has been so long since my last treatment, I'm supposed to pay attention to make sure I don't have a reaction to it. It's rare but it happens. I just had a hot flash and had to remind myself that those are normal.
I brought my Kindle, my phone and a book to occupy myself. But I have a feeling that I'm going to be asleep. Maybe not too long because I just started Shadow of the Hegemon and I really want to get it read.
Yup. I fell asleep for an hour and a half. I'm trying to wake up enough so when it's time to head home I can drive my car home instead of leaving it at my best friend's house overnight. no reaction which is a good think. 10 days from now my hair will start falling out again. I keep reminding myself to get a picture of my cute sassy do before it's gone.
Next up will be the carboplatin, which is what we're hoping I'm not resistant to. That will only take 30 minutes or so. I'm getting 80% of a normal dose in hopes it won't do such a number on my bone marrow.
So many have sent me support via Facebook today. To be honest, I'm always surprised and a bit humbled by what I read there. I understand in a way. Before I got sick, I never thought I'd handle it well. I hoped I would, but you never really know. Once it happened, I just did what I had to do. And I just keep doing it. It's not anything special. It's just doing what has to be done. Trust me - if it were you, you'd do the same. I discovered a long time ago that we're stronger than we think. I assure you - YOU are stronger than you think. When the tough times come most of us just get 'er done.
We just started the carbo and I'm on the home stretch. I'll be home in an hour or so, and hoping that the nausea is being held off by both the pre-meds and the Zofran I'll be taking 3 times a day. I'm increasing my stool softener for the next few days so I don't get "bound up" as my grandmother used to say. It's the side effect of the pre-meds that no one talks about. The last thing I need is something turning into a partial bowel obstruction. TMI - I know. But I had to find out the hard way. I don't want that for anyone else.
So far, it's been pretty easy. It's so different than the first chemo of frontline treatment. Then I was in the hospital, after discovering I had blood clots in both lungs. This time comparatively speaking, is easy peasy. I'm so much stronger. And just as determined to beat this crap.
Because that's what has to be done.
My insurance finally approved the cancer regimen I had for frontline chemo, and right now I am kicked back receiving pre- meds prior to starting carbo/taxol.
The pre-meds they give seem to make me cold. When I arrived, this room seemed to be the perfect temperature. An hour later, I've pulled out my blanket because I'm freezing. It's the meds - they're room temperature and it chills us.
The massive dose of Benedryl I was given is making me seriously sleepy. If I stop sounding coherent that's why. They have just started the Taxol, which most likely will take 3 hours. Since it has been so long since my last treatment, I'm supposed to pay attention to make sure I don't have a reaction to it. It's rare but it happens. I just had a hot flash and had to remind myself that those are normal.
I brought my Kindle, my phone and a book to occupy myself. But I have a feeling that I'm going to be asleep. Maybe not too long because I just started Shadow of the Hegemon and I really want to get it read.
Yup. I fell asleep for an hour and a half. I'm trying to wake up enough so when it's time to head home I can drive my car home instead of leaving it at my best friend's house overnight. no reaction which is a good think. 10 days from now my hair will start falling out again. I keep reminding myself to get a picture of my cute sassy do before it's gone.
Next up will be the carboplatin, which is what we're hoping I'm not resistant to. That will only take 30 minutes or so. I'm getting 80% of a normal dose in hopes it won't do such a number on my bone marrow.
So many have sent me support via Facebook today. To be honest, I'm always surprised and a bit humbled by what I read there. I understand in a way. Before I got sick, I never thought I'd handle it well. I hoped I would, but you never really know. Once it happened, I just did what I had to do. And I just keep doing it. It's not anything special. It's just doing what has to be done. Trust me - if it were you, you'd do the same. I discovered a long time ago that we're stronger than we think. I assure you - YOU are stronger than you think. When the tough times come most of us just get 'er done.
We just started the carbo and I'm on the home stretch. I'll be home in an hour or so, and hoping that the nausea is being held off by both the pre-meds and the Zofran I'll be taking 3 times a day. I'm increasing my stool softener for the next few days so I don't get "bound up" as my grandmother used to say. It's the side effect of the pre-meds that no one talks about. The last thing I need is something turning into a partial bowel obstruction. TMI - I know. But I had to find out the hard way. I don't want that for anyone else.
So far, it's been pretty easy. It's so different than the first chemo of frontline treatment. Then I was in the hospital, after discovering I had blood clots in both lungs. This time comparatively speaking, is easy peasy. I'm so much stronger. And just as determined to beat this crap.
Because that's what has to be done.
Tuesday, October 22, 2013
Not The Life I Expected
So here's the deal.
I'm definitely recurring - my CA-125 is up to 231. Way outside of normal range. Ascites is developing pretty severely. Yesterday I had 3 liters drained off of my abdomen. I am averaging about 90 mls a day in what we drain out of the space around my left lung.
Yet I have not yet started chemo. Because of my insurance.
Look - I know they have to run a business. And part of that is to have doctors on staff to review things like requests for approval for chemo regimens. But they need to have doctors that are actually up on the latest developments in the various cancer treatments, and they sure as hell shouldn't be second-guessing on of the top researchers in the field.
They certainly shouldn't take nine days to deny that regimen. And if they are going to deny that regimen, then they shouldn't take another week to approve the same regimen I was on the first time I had chemo - or request further clinical information. Honestly folks - my doctor isn't requesting more chemo so that I can lose weight. It's because my cancer is returning.
That's where we are. As of today, my insurance company still has not approved carbo/taxol for my treatment. My CA-125 has been rising since September, and on October 2nd, nodules were felt during an exam. Cancer is happily growing inside of me for going on two months now, and because of some random doctor at the insurance company, I don't know how much longer it will continue to run rampant. My fear is that my most recent CT scan still didn't show any tumors, but just the ascites building, and that they will try to use that as an excuse to delay treatment. My oncology nurse says I'm scheduled for chemo on Thursday. I hope they approve it by then. If it hasn't been approved by the end of business today, tomorrow I will get the name of the person they are dealing with and start calling every hour asking them what the hold up is. Because folks - this is my life we're talking about here.
Now - before anyone tries to use this as a political issue - stop right now. This is a health care issue, and there is no doubt in my mind that I would have had this same thing come up 6 months ago. This is what happens when a business - such as insurance companies - decide to make health care decisions. While I understand that they feel they are trying to control costs, they are doing so the wrong way. I am convinced that these types of decisions cost LIVES. There are people who will not fight with the insurance companies when this happens - I'm not one of them. But how many people die because some general doctor makes this type of decision? Health care decisions should be between the patient and doctor. No one else. NO ONE ELSE.
It boggles my mind that this is my life now. That I am literally going to be fighting an insurance company for my life. How the hell did this happen? This isn't the life I was supposed to have. I'm supposed to be enjoying working my last four and a half years before I can retire from my job and start enjoying grandbabies. I'm supposed to be getting my garden and flower beds ready for winter, not making sure that I'm walking around enough to prevent blood clots, and getting fluid drained off of my abdomen. I should be still trying to convince my husband we should take a trip to Cancun, not hoping that I'll be able to go in the early spring depending on where I am with chemo treatment!
Seriously y'all - I've been had.
I can't change it. Yet sometimes it still seems surreal. It's hard to accept at times that I have cancer. Cancer! Yet I do. Hmph.
So. That's where we are. I'm feeling much better since they drained the ascites off yesterday, a little sore (because ow - having a needle stuck in your side to drain fluid is ouchy even with lidocaine!). I'm trying to not be too scared, and I'm relieved that nothing yet is showing on the scan. But it's only a matter of time, so we need to get this show on the road. Again - any thoughts, prayers, good vibes, etc are appreciated. Y'all have no idea how much your love and support means to me.
(And no - I haven't gotten any more senior citizen discounts. Heh)
I'm definitely recurring - my CA-125 is up to 231. Way outside of normal range. Ascites is developing pretty severely. Yesterday I had 3 liters drained off of my abdomen. I am averaging about 90 mls a day in what we drain out of the space around my left lung.
Yet I have not yet started chemo. Because of my insurance.
Look - I know they have to run a business. And part of that is to have doctors on staff to review things like requests for approval for chemo regimens. But they need to have doctors that are actually up on the latest developments in the various cancer treatments, and they sure as hell shouldn't be second-guessing on of the top researchers in the field.
They certainly shouldn't take nine days to deny that regimen. And if they are going to deny that regimen, then they shouldn't take another week to approve the same regimen I was on the first time I had chemo - or request further clinical information. Honestly folks - my doctor isn't requesting more chemo so that I can lose weight. It's because my cancer is returning.
That's where we are. As of today, my insurance company still has not approved carbo/taxol for my treatment. My CA-125 has been rising since September, and on October 2nd, nodules were felt during an exam. Cancer is happily growing inside of me for going on two months now, and because of some random doctor at the insurance company, I don't know how much longer it will continue to run rampant. My fear is that my most recent CT scan still didn't show any tumors, but just the ascites building, and that they will try to use that as an excuse to delay treatment. My oncology nurse says I'm scheduled for chemo on Thursday. I hope they approve it by then. If it hasn't been approved by the end of business today, tomorrow I will get the name of the person they are dealing with and start calling every hour asking them what the hold up is. Because folks - this is my life we're talking about here.
Now - before anyone tries to use this as a political issue - stop right now. This is a health care issue, and there is no doubt in my mind that I would have had this same thing come up 6 months ago. This is what happens when a business - such as insurance companies - decide to make health care decisions. While I understand that they feel they are trying to control costs, they are doing so the wrong way. I am convinced that these types of decisions cost LIVES. There are people who will not fight with the insurance companies when this happens - I'm not one of them. But how many people die because some general doctor makes this type of decision? Health care decisions should be between the patient and doctor. No one else. NO ONE ELSE.
It boggles my mind that this is my life now. That I am literally going to be fighting an insurance company for my life. How the hell did this happen? This isn't the life I was supposed to have. I'm supposed to be enjoying working my last four and a half years before I can retire from my job and start enjoying grandbabies. I'm supposed to be getting my garden and flower beds ready for winter, not making sure that I'm walking around enough to prevent blood clots, and getting fluid drained off of my abdomen. I should be still trying to convince my husband we should take a trip to Cancun, not hoping that I'll be able to go in the early spring depending on where I am with chemo treatment!
Seriously y'all - I've been had.
I can't change it. Yet sometimes it still seems surreal. It's hard to accept at times that I have cancer. Cancer! Yet I do. Hmph.
So. That's where we are. I'm feeling much better since they drained the ascites off yesterday, a little sore (because ow - having a needle stuck in your side to drain fluid is ouchy even with lidocaine!). I'm trying to not be too scared, and I'm relieved that nothing yet is showing on the scan. But it's only a matter of time, so we need to get this show on the road. Again - any thoughts, prayers, good vibes, etc are appreciated. Y'all have no idea how much your love and support means to me.
(And no - I haven't gotten any more senior citizen discounts. Heh)
Friday, October 11, 2013
The Next Step
October is a weird month for me now.
A year ago from this week, I was in the process of confirming what I already knew in my heart - that I had ovarian cancer. I was getting ultrasounds, blood tests, CTs, and paracentesis. My husband knew, and I told my boss so that I could explain why I was having to take so much time off all of sudden, but I didn't tell anyone else.
Those were lonely, scary weeks. I did my best to go on about my life as usual - I worked, went to football games, had lunch with my friends when I could, but didn't really tell them what was going on with me. By about the middle of the month or so, I had been formally diagnosed with cancer, although the doctor couldn't tell me definitively it was ovarian until I had surgery. But I knew.
October is Breast Cancer Awareness Month. It's a huge big to-do across the national. I'm pretty sure we all aware that breast cancer exists, and that it kills a ridiculous amount of women each year.
I knew.
I also knew in my heart I had cancer. Once I was officially diagnosed, I remember telling my friends. Telling my sons. Calling and telling my parents. Then slowly letting people I work with know what was going on, and trying to get them prepared for my being out for a few weeks.
Each time I hear of a new pink activity, I wonder why there wasn't more awareness around for ovarian cancer. Why I didn't hear anything about it for the entire month of September - which is Ovarian Cancer Awareness Month. Maybe if I had, I might have gone to the doctor a little earlier. I don't know - nor will I ever know - if a month made that much difference in my staging. When I think about when I started getting short of breath, I think it might have.
This year, I made sure the folks in my small community heard about the most basic symptoms of ovarian cancer in September. And even though it's October, I'll still be stashing symptom cards around town.
As I said previously, we're all pretty aware of breast cancer. We're aware of how to do breast exams, to get our yearly mammogram after we hit 40. If all those pink ribbons raised funds towards *research* into a cure and better treatments, I would be happier. That's what is really needed. Research. Awareness has been achieved for that type of cancer. Now the funds need to be funneled towards research - not the foundation's CEO's $700K salary. Just sayin'.
Because research into any type of cancer can lead to a cure - or treatment - for another type of cancer. The taxol that I will most likely be starting again next week was discovered while doing breast cancer research. So let the research abound! Right now we have a bunch of over-paid polititians holding our government - and many cancer research projects - hostage over political ideology. I don't care which side you're on - or if you're a middle-of-the-roader as I am. But it is ridiculous that much needed research is being held up because someone isn't getting their way. They all need to grow the flock up.
(and that concludes my political rant for the year)(well - at least for now)
Navigating October will be weird this year - as I said - it's the month of my diagnosis and surgery. I'm flooded with memories of last year every day - made even more surreal as I am recurring this year. Ascites is beginning to build up again. My belly is starting to distend, and be uncomfortable. I'm short of breath again - not quite as bad as last year, but certainly not the freedom of breath I had even a month ago. I'm constantly flooded with fear that I will revert to that person who was so ill last November - the one who couldn't go up stairs, or walk very far because she was so weak. The one who literally had to spend the day after chemo in bed because she was so sick. I don't want to go there again.
I was enjoying feeling better, you know?
So far I've managed to keep the anxiety attacks to a manageable level. I don't have to take anything for them, and other than distracting me from work sometimes, they haven't incapacitated me. But they are there. With every twinge, every new ache, they are there. I keep praying that they'll go away - that I'll find a graceful way to deal with all this without freaking out. This blog and talking to my husband have been the best ways to keep me calm and focused. But my calm now is nothing to compared to what calm used to mean to me.
Everything changed. Everything.
I know my blogs aren't all that fun to read lately. They are full of my fear and dread, and talk about my symptoms and what's ahead. That's what fills the mind of someone having a recurrence apparently. It doesn't mean that that's all my life is about. I'm still doing what I can to enjoy life. I'm not giving up by any means. But I write not just for myself, but for any other ovarian cancer patient out there, or their caregivers, or their loved ones - so they know that what they feel is normal. I wish (oh man - do I ever!) it could be a blog about an ovarian cancer patient in full remission for months on end. Apparently that isn't the story I'm meant to tell. So I tell the story I've been given.
And look forward to the happy ending next year ;-)
A year ago from this week, I was in the process of confirming what I already knew in my heart - that I had ovarian cancer. I was getting ultrasounds, blood tests, CTs, and paracentesis. My husband knew, and I told my boss so that I could explain why I was having to take so much time off all of sudden, but I didn't tell anyone else.
Those were lonely, scary weeks. I did my best to go on about my life as usual - I worked, went to football games, had lunch with my friends when I could, but didn't really tell them what was going on with me. By about the middle of the month or so, I had been formally diagnosed with cancer, although the doctor couldn't tell me definitively it was ovarian until I had surgery. But I knew.
October is Breast Cancer Awareness Month. It's a huge big to-do across the national. I'm pretty sure we all aware that breast cancer exists, and that it kills a ridiculous amount of women each year.
I knew.
I also knew in my heart I had cancer. Once I was officially diagnosed, I remember telling my friends. Telling my sons. Calling and telling my parents. Then slowly letting people I work with know what was going on, and trying to get them prepared for my being out for a few weeks.
Each time I hear of a new pink activity, I wonder why there wasn't more awareness around for ovarian cancer. Why I didn't hear anything about it for the entire month of September - which is Ovarian Cancer Awareness Month. Maybe if I had, I might have gone to the doctor a little earlier. I don't know - nor will I ever know - if a month made that much difference in my staging. When I think about when I started getting short of breath, I think it might have.
This year, I made sure the folks in my small community heard about the most basic symptoms of ovarian cancer in September. And even though it's October, I'll still be stashing symptom cards around town.
As I said previously, we're all pretty aware of breast cancer. We're aware of how to do breast exams, to get our yearly mammogram after we hit 40. If all those pink ribbons raised funds towards *research* into a cure and better treatments, I would be happier. That's what is really needed. Research. Awareness has been achieved for that type of cancer. Now the funds need to be funneled towards research - not the foundation's CEO's $700K salary. Just sayin'.
Because research into any type of cancer can lead to a cure - or treatment - for another type of cancer. The taxol that I will most likely be starting again next week was discovered while doing breast cancer research. So let the research abound! Right now we have a bunch of over-paid polititians holding our government - and many cancer research projects - hostage over political ideology. I don't care which side you're on - or if you're a middle-of-the-roader as I am. But it is ridiculous that much needed research is being held up because someone isn't getting their way. They all need to grow the flock up.
(and that concludes my political rant for the year)(well - at least for now)
Navigating October will be weird this year - as I said - it's the month of my diagnosis and surgery. I'm flooded with memories of last year every day - made even more surreal as I am recurring this year. Ascites is beginning to build up again. My belly is starting to distend, and be uncomfortable. I'm short of breath again - not quite as bad as last year, but certainly not the freedom of breath I had even a month ago. I'm constantly flooded with fear that I will revert to that person who was so ill last November - the one who couldn't go up stairs, or walk very far because she was so weak. The one who literally had to spend the day after chemo in bed because she was so sick. I don't want to go there again.
I was enjoying feeling better, you know?
So far I've managed to keep the anxiety attacks to a manageable level. I don't have to take anything for them, and other than distracting me from work sometimes, they haven't incapacitated me. But they are there. With every twinge, every new ache, they are there. I keep praying that they'll go away - that I'll find a graceful way to deal with all this without freaking out. This blog and talking to my husband have been the best ways to keep me calm and focused. But my calm now is nothing to compared to what calm used to mean to me.
Everything changed. Everything.
I know my blogs aren't all that fun to read lately. They are full of my fear and dread, and talk about my symptoms and what's ahead. That's what fills the mind of someone having a recurrence apparently. It doesn't mean that that's all my life is about. I'm still doing what I can to enjoy life. I'm not giving up by any means. But I write not just for myself, but for any other ovarian cancer patient out there, or their caregivers, or their loved ones - so they know that what they feel is normal. I wish (oh man - do I ever!) it could be a blog about an ovarian cancer patient in full remission for months on end. Apparently that isn't the story I'm meant to tell. So I tell the story I've been given.
And look forward to the happy ending next year ;-)
Sunday, October 06, 2013
Finding Silver Linings
This is my 100th post.
It's only taken me over 6 years to get to 100! Well - that and cancer. Let's face it, I didn't start blogging on a regular basis again until I started fighting cancer.
Last week, my husband and I went down to Houston for a consult at MD Anderson. We were hoping that I might qualify for a clinical trial - we had always said if I recurred, we would go there. So - we did.
To be honest, down deep, I hoped I would go down there, and the doctor would tell me "Don't worry! We'll cure you!" I know it wasn't a reasonable hope, but there it is. Needless to say, that wasn't what he said. He did tell us that all of their clinical trials at the moment required coming to MD Anderson weekly. We are 9 hours away from Houston, so that wasn't an option for us. So he told us about several different second line chemo options, and gave us his recommendation for which one he would put me on if I was being treated down there. He is supposed to send that to my oncologist here, and I meet with him in a week or so.
I have very mixed feelings about going back on chemo. On one hand, I'm ready to start doing something before the cancer gets any worse. My ascites in my abdomen is starting back up, and the fluid around my left lung is increasing. The doctor in Houston was able to actually feel nodules during my physical exam. I don't like sitting here knowing that it's growing unchecked at the moment, gnawing away at my insides like a rat that's found its way into a bag of grain.
That doesn't mean that I'm excited about being on chemo again. Although this new regimen is supposed to be less harsh on my body - not as much nausea, I might not even lose my hair although it may thin - fatigue is supposed to be a big side effect. I don't feel like I have that much energy right now, so that's a worry. And any nausea is going to suck.
I try to look for silver linings. While nausea sucks, maybe then I'll lose some of this weight I've gained back since I was able to eat everything again. My hair came in so thick that a little thinning will probably just make it look like it did before I lost it all. One of the new chemo drugs is supposed to work well on ascites, so that should go away quickly, and maybe I'll even get to where I can get this last catheter out.
Most of all, I can continue to fight this lousy disease off. Maybe - because I'm Stage IV - I can't be cured. But as long as I can fight, I can live with stable disease. I can learn to live with cancer.
On the home front, my youngest was nominated for homecoming court this year. While he wasn't elected king, we still got a kick out of him being nominated. He looked very handsome at the pep rally last week, and he managed to make his mama both cry and laugh within two minutes. I'm so glad I'm still here to enjoy his senior year. I'm bummed however, that every. single.one of the pictures I took of him at the pep rally were blurry. My only hope is that the mom of the girl he was paired with will share her pictures!
The garden is winding down. I'm happy to report that I indeed get 1st place in the biggest watermelon contest at the fair this year. Our entry was 40 pounds, and I'm already plotting how to grow one even bigger next year. But there is one goal met, eh? We didn't get as many potatoes this year as we did last year, but we did get some. The black eyed peas are just about dead, and the green beans are debating how much longer they're willing to put out. Our cantaloupes, after producing a ridiculous amount of large tasty melons, suddenly died out in about 3 days...some sort of powdery mildew looking stuff wiped them out. I almost ate so much cantaloupe that I got sick of it. Almost. I've always loved cantaloupe. We did have to share with friends - when you are picking 7 or 8 large cantaloupe a day, there's no way you can eat it all.
We still have a few watermelons we need to eat, and our peas and snow peas are growing quite well. We noticed yesterday that the peas are blooming and making peas, so I'm really looking forward to having fresh peas in a few weeks. If you've never had fresh peas from the garden, you have no idea what you're missing!
So - wish me luck as I start this whole crazy battle up again. I'll take any prayers, good wishes, happy thoughts and positive energy you can spare. Because I'm not ready to give up by any means.
I'm determined I'm going to live with cancer. Whether cancer likes that or not. Bring it, bitch.
I ain't skeered. (much)
It's only taken me over 6 years to get to 100! Well - that and cancer. Let's face it, I didn't start blogging on a regular basis again until I started fighting cancer.
Last week, my husband and I went down to Houston for a consult at MD Anderson. We were hoping that I might qualify for a clinical trial - we had always said if I recurred, we would go there. So - we did.
To be honest, down deep, I hoped I would go down there, and the doctor would tell me "Don't worry! We'll cure you!" I know it wasn't a reasonable hope, but there it is. Needless to say, that wasn't what he said. He did tell us that all of their clinical trials at the moment required coming to MD Anderson weekly. We are 9 hours away from Houston, so that wasn't an option for us. So he told us about several different second line chemo options, and gave us his recommendation for which one he would put me on if I was being treated down there. He is supposed to send that to my oncologist here, and I meet with him in a week or so.
I have very mixed feelings about going back on chemo. On one hand, I'm ready to start doing something before the cancer gets any worse. My ascites in my abdomen is starting back up, and the fluid around my left lung is increasing. The doctor in Houston was able to actually feel nodules during my physical exam. I don't like sitting here knowing that it's growing unchecked at the moment, gnawing away at my insides like a rat that's found its way into a bag of grain.
That doesn't mean that I'm excited about being on chemo again. Although this new regimen is supposed to be less harsh on my body - not as much nausea, I might not even lose my hair although it may thin - fatigue is supposed to be a big side effect. I don't feel like I have that much energy right now, so that's a worry. And any nausea is going to suck.
I try to look for silver linings. While nausea sucks, maybe then I'll lose some of this weight I've gained back since I was able to eat everything again. My hair came in so thick that a little thinning will probably just make it look like it did before I lost it all. One of the new chemo drugs is supposed to work well on ascites, so that should go away quickly, and maybe I'll even get to where I can get this last catheter out.
Most of all, I can continue to fight this lousy disease off. Maybe - because I'm Stage IV - I can't be cured. But as long as I can fight, I can live with stable disease. I can learn to live with cancer.
On the home front, my youngest was nominated for homecoming court this year. While he wasn't elected king, we still got a kick out of him being nominated. He looked very handsome at the pep rally last week, and he managed to make his mama both cry and laugh within two minutes. I'm so glad I'm still here to enjoy his senior year. I'm bummed however, that every. single.one of the pictures I took of him at the pep rally were blurry. My only hope is that the mom of the girl he was paired with will share her pictures!
The garden is winding down. I'm happy to report that I indeed get 1st place in the biggest watermelon contest at the fair this year. Our entry was 40 pounds, and I'm already plotting how to grow one even bigger next year. But there is one goal met, eh? We didn't get as many potatoes this year as we did last year, but we did get some. The black eyed peas are just about dead, and the green beans are debating how much longer they're willing to put out. Our cantaloupes, after producing a ridiculous amount of large tasty melons, suddenly died out in about 3 days...some sort of powdery mildew looking stuff wiped them out. I almost ate so much cantaloupe that I got sick of it. Almost. I've always loved cantaloupe. We did have to share with friends - when you are picking 7 or 8 large cantaloupe a day, there's no way you can eat it all.
We still have a few watermelons we need to eat, and our peas and snow peas are growing quite well. We noticed yesterday that the peas are blooming and making peas, so I'm really looking forward to having fresh peas in a few weeks. If you've never had fresh peas from the garden, you have no idea what you're missing!
So - wish me luck as I start this whole crazy battle up again. I'll take any prayers, good wishes, happy thoughts and positive energy you can spare. Because I'm not ready to give up by any means.
I'm determined I'm going to live with cancer. Whether cancer likes that or not. Bring it, bitch.
I ain't skeered. (much)
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