I don't know that anyone reads this blog anymore but if so and you've wondered if I died or dropped off the face of the Earth then the answer is no. I'm alive and kicking--literally! But more about that later.
At the last post I had gone without using my feeding tube for a few weeks but I ended up using again just before Christmas--my throat still wasn't healed enough to be able to eat much and my strength and everything was very low from lack of nutrition. But I did make it through Christmas which was nice except for the not being able to eat part.
Dylan graduated from college--ROLL TIDE--and we are all very proud. He was hired on full time by the company he was working for and found an apartment on Highland Avenue. I am thankful to have him in town at least for a little while. I wasn't ready to lose him again but I know one day he'll probably want to move to another city, possibly even another *gulp* state.
Of course, New Year's and the subsequent National Championship game was awesome. I was still unable to eat or even drink anything much except water. But a few weeks after that, I took a roadtrip with Dylan and Jeff to Chattanooga to get lottery tickets and I didn't realize it was going to be an all day trip so I didn't pack any of my feeding tube supplies or nutritional supplements. We ended up spending the entire day in Chattanooga visiting the top of Lookout Mountain and hung around the downtown area. We toured a distillery and had lunch so I had to try and eat something. I managed to get down a fair amount of a salad and from that point on, I never needed to use my tube again.
It was still awhile before I got all my taste buds back and some things still bother me a little bit. Pizza or anything with tomato-based sauce was challenging for awhile. I still don't much care for barbeque. But as evidenced by my weight gain, I'm eating quite well now. I have put back on 30 of the 65 pounds I lost. Now I'm desperately trying not to gain anymore weight and in fact, I wouldn't mind re-losing that 30! I'm still in my size 10's and 12's but if I can't get a handle on a good nutritional plan I will be needing a bigger size soon. I can't hardly remember what it was like to not be able to eat now. I'm glad that I can eat again and I really enjoy good food so I'm not going to stress about weight too much. Life is too short to worry too much about anything. I just want to be healthy.
Brooke graduated high school, we took a beach trip, a trip to Six Flags and life has pretty much settled back to normal. I bought a kayak but have only had it out once--at Wolf Creek in Foley. But it was fun and I plan to do more. I got a bike and have been riding some. I've been walking and trying to work out and hike some. But I've also been working a fair amount of overtime at work so it's been difficult to fit it all in. Sleep issues continue and it is what it is.
Met with the crochet group some this summer, too and looking forward to meeting again with them in the Fall. I finished a baby blanket for Baby Henderson, due December 2016. I did a Micky Mouse blanket for my friend's grandbaby, an afghan for my living room and some baby hats and booties for Baby Hendo, too. I love that group of ladies and the time we spend together. As much as I am on the go go go all the time, it's nice to have an evening of just quiet conversation, food, fellowship, prayer and crochet!
We move Brooke into the dorms at Montevallo in less than a month now. Last week she went to the beach with a church group and I missed her so much more than I thought I would so I jokingly told her I decided that she needs to just stay home and go to Jeff State! Ha! It did not go over well, of course, and I told her I was kidding. I would never do anything to hold one of my kids back from spreading those wings (responsibly) but oh how I miss the days when the were little and I was their whole world. But before I get all teared up again, let me so how very proud I am of all of them. They were good kids and grew up to be amazing young adults and I'm so excited to see the next steps they each will take.
We did nix the plans on the apartment with two roommates, however. I just wasn't secure in that idea and found out the dorms at Montevallo are nowhere near as expensive as 'Bama so it was a more practical option, given the limited amount of housing in Montevallo anyway. Maybe next year we can explore other options but this year, I think it's the best way to go. She wasn't very happy about that at first but I think she now realizes it's a good decision.
As for church, I have started serving again with Silver Linings/Hope for the Homeless and have really enjoyed it. I have served with the Events team and Highlands and did a SERVE project of my own for SERVEday16 this year. We handed out water and picked up trash around Cosby Lake. I am not a fan of the baptist church but I'm glad Brooke enjoys going to Ridgecrest. She seems to enjoy it and I just pray that it will help her to see God's plan for her life.
Last week, I started taking Salsa dancing lessons with the singles group and also started taking a 4-week self defense class at a local martial arts gym. I LOVE both!!! I've always loved dance and am really wanting to get back into zumba and bellydancing but it's so much fun to punch and kick that I'm also thinking about doing cage fitness! So much to do and so little time!
One thing I have not done much of this summer is read and that makes me sad. There's so much on my list and I just can't seem to find time. Or maybe I just am not making it a priority because I got so burned out during grad school last semester. Speaking of, I finished with 2 A's and a B and I am so happy! The Management Policy class was really challenging! For the Fall Semester I will be taking International Business and Finance. I'm two semesters away from that MBA! I need to take my Economics equivalency test soon, though. My grade in my Economics undergraduate class was good enough to graduate with a Bachelor's but not good enough for a Master's. So they want me to either retake the class or take an equivalency test. It's not a big deal, I just need to do it instead of forget and put it off.
I am trying to get out there and date again but it's hard because---again, I don't have much time. I'm happy with the way things are right now but I do occasionally wish I had someone to take places with me, etc. I have a serious crush on one individual but I don't think he's interested in my so I'm trying to get him out of my head. But if only...:)
Anyway, that's my life right now. I love it and I'm glad to have it.
Wednesday, July 20, 2016
Thursday, December 3, 2015
Just random thoughts
I saw my regular doctor on Monday and she is fabulous. She adjusted my thyroid medicine, put me back on all my vitamins, adding some iodine for cancer prevention, increased my celexa and added busperone which is supposed to help with my anxiety and also will help me focus and concentrate. I'm already feeling better.
I'm getting along better with my ex, too.
Now if I can just get my knee straightened out. I wore heels to work a month or so ago and since then, the left knee has just been killing me. I got an x-ray before thanksgiving from a new orthopedic doctor and she disagreed with Dr. Nichols assertion that I needed total knee replacement. She said I'm much too young for such an aggressive surgery. She said the x-ray looks good and that it might actually be torn meniscus. That requires surgery as well but it's not as long of a recovery time. I need to get an MRI first and we are trying to postpone everything until after the first of the year. She gave me a steroid shot and it felt better for a few days but it's already worn off. I've had so many in the last 15 years they just aren't very effective for me anymore. It is time to get something done. I just hope I can hang in there a few more weeks.
I'm trying to eat more but it's hard. NOTHING tastes like it should and that makes me lose my appetite fast. They said they would not take my feeding tube out until I go for 30 day without using it AND don't lose anymore weight. So I'm trying not to use it and haven't in about 2 weeks. But the losing weight part I am going to fail. I never ever in my life thought I would have a problem keeping weight on. And it's not like I'm skinny (yet). I've lost about 45 pounds. But I absolutely cannot tolerate sugar or bread. Anything sweet just makes me sick. I can't even get past the first few bites. I've been without sugar for so long I just can't stand it anymore. As for bread, I just don't have enough saliva to help break it down and dissolve it. So without sugar or bread, I'm pretty much low carbing which has my body in ketosis=losing weight. I'm not trying to. I just am. I used to would have killed to be able to do this but now...
I want to be able to eat again. I love that I've dropped a few sizes. But I miss food and the social life I had that revolved around it. I hate not being able to eat this holiday season, go out to eat with friends, family, etc. I don't even want to do any baking or cooking right now. What's the point?
I need my mouth to heal faster. I just don't have patience for this cancer crap!
I'm getting along better with my ex, too.
Now if I can just get my knee straightened out. I wore heels to work a month or so ago and since then, the left knee has just been killing me. I got an x-ray before thanksgiving from a new orthopedic doctor and she disagreed with Dr. Nichols assertion that I needed total knee replacement. She said I'm much too young for such an aggressive surgery. She said the x-ray looks good and that it might actually be torn meniscus. That requires surgery as well but it's not as long of a recovery time. I need to get an MRI first and we are trying to postpone everything until after the first of the year. She gave me a steroid shot and it felt better for a few days but it's already worn off. I've had so many in the last 15 years they just aren't very effective for me anymore. It is time to get something done. I just hope I can hang in there a few more weeks.
I'm trying to eat more but it's hard. NOTHING tastes like it should and that makes me lose my appetite fast. They said they would not take my feeding tube out until I go for 30 day without using it AND don't lose anymore weight. So I'm trying not to use it and haven't in about 2 weeks. But the losing weight part I am going to fail. I never ever in my life thought I would have a problem keeping weight on. And it's not like I'm skinny (yet). I've lost about 45 pounds. But I absolutely cannot tolerate sugar or bread. Anything sweet just makes me sick. I can't even get past the first few bites. I've been without sugar for so long I just can't stand it anymore. As for bread, I just don't have enough saliva to help break it down and dissolve it. So without sugar or bread, I'm pretty much low carbing which has my body in ketosis=losing weight. I'm not trying to. I just am. I used to would have killed to be able to do this but now...
I want to be able to eat again. I love that I've dropped a few sizes. But I miss food and the social life I had that revolved around it. I hate not being able to eat this holiday season, go out to eat with friends, family, etc. I don't even want to do any baking or cooking right now. What's the point?
I need my mouth to heal faster. I just don't have patience for this cancer crap!
Saturday, November 28, 2015
Six weeks post treatment
Not sure why I feel the need to write this down. Everyone already knows I have been a complete mess for the past few weeks. I am not sure what happened to me. Maybe a combination of things but me or my doctors have yet to figure it out.
I can't get back the feelings I had when I was first diagnosed--thankful, blessed, ready to fight, just pure contentment in whatever the Lord had in store for me. I've gone from that to feeling nothing but hopelessness and I don't know why. I survived. I had the surgery and completed my treatment. I'm waiting to get a clean scan but all my doctors assure me it will be clean, that they are just wanting a "picture" of what they want me to look like going forward. So I'm not worried that I still have cancer.
I am worried that one day it will come back because this type of cancer ALWAYS comes back. It may be a few years. It may be 15-20. But one day, I'll have to go through this all over again and for the rest of my life, I'll have to be closely monitored. The knowledge of all that stresses me out. I'm ALWAYS going to have to take off work and go to some appointment. And I don't care how compassionate employers are or try to be, they still hate hiring people that aren't 100% healthy.
And speaking of employers, my job isn't going so well. I wasn't ready to go back to work when I did but I had no choice about it. My finances dictated I go back. In fact, my finances are dictating so much of my stress right now, I've been down this road SO many times in my life that in many ways, I should know that I will get it straightened out somehow but also I should know how to prevent this from happening so much! I have a degree in finance for the love of Pete. I should be more financially secure than I am. I have to keep reminding myself that it's only been 5 years since I've been completely on my own and that I have come a long way. I still just have so much further to go and at the age of 45 it irritates me.
So I went back to work. Keep in mind, I only started this job in February. I got ONE day to train and then was on my own. I had no clue. I did the best I could. Then not even six months later, I got my diagnosis, had my surgery and started treatment. I hung in there the best I could through all the changes in the firm and our department and my treatment. Then I had to go on leave because my body couldn't take it anymore. I come back to work to MORE changes and things I have no clue about and when I can't perform (who could after all this?), I get a bad review. And again--I haven't even been there a year yet.
What kind of employer does that? I left thinking I had their support but came back to find that I really need to be going elsewhere as soon as possible. And I STILL HAVE appointments etc. to work around with an unsympathetic supervisor. It's incredibly stressful.
So I think about my financial issues and I start to panic. And I push my ex. He was SO good to me during my treatment it made me feel like I STILL loved him and wish I had never left him in the first place. And we still have these three amazing kids together. And we still have things in common. So we still spend time together.
But I'm scared to death--scared of financial ruin, scared of starting over, scared of my cancer coming back, scared of the kids growing up and being gone, scared of being alone. And I panic. And I push. HUGE mistake. I pushed him away and now I just have this desperate feeling that I just need to be around him to feel calm.
I don't know and I know I'm rambling. And my counselor says this is all normal when you get cancer. You wonder how different things would be if you still had your family. And don't get me wrong, my mom, sisters and friends all rallied around me when I was going through treatment and it was amazing. And Jeff was wonderful and he gave me hope. But somehow it still didn't look like I thought it would have, especially if I had still been married.
I know I should feel grateful and I do. But I also can't shake this hopeless feeling. Not right now. I'm trying. I've lost control a few times and hurt people that I love. I don't want to do that. I don't want to be a crazy lunatic bitch. I want to be a good person. A person that attracts people. A person that others want to be around. Right now I think most people are afraid of me.
I wonder if the radiation destroyed the effectiveness of my anti-depressants. Or if it's messed up my hormones. Or if it has something to do with the vitamin regimen that I was on pre-cancer and they took me off of because it was counter-productive to the radiation. I see my doctor Wednesday and I can't wait to tell her all this and pray that she can help in some way. I don't have time for the nutrition and holistic stuff to work. I'm under so much pressure and need something that will work now. It may be a quick fix. But until I have the time to fix it for real, that's what I need.
Please pray for me. Pray that I will get the answers and help I need from the doctor. Pray that I can stop feeling so emotional an hopeless all the time. Pray that God will speak to my children's hearts and let them know how much I love them and that I need them right now. That I want to be a mom they can be proud of. That I will get it together and hopefully soon. PLEASE pray these things for me.
I can't get back the feelings I had when I was first diagnosed--thankful, blessed, ready to fight, just pure contentment in whatever the Lord had in store for me. I've gone from that to feeling nothing but hopelessness and I don't know why. I survived. I had the surgery and completed my treatment. I'm waiting to get a clean scan but all my doctors assure me it will be clean, that they are just wanting a "picture" of what they want me to look like going forward. So I'm not worried that I still have cancer.
I am worried that one day it will come back because this type of cancer ALWAYS comes back. It may be a few years. It may be 15-20. But one day, I'll have to go through this all over again and for the rest of my life, I'll have to be closely monitored. The knowledge of all that stresses me out. I'm ALWAYS going to have to take off work and go to some appointment. And I don't care how compassionate employers are or try to be, they still hate hiring people that aren't 100% healthy.
And speaking of employers, my job isn't going so well. I wasn't ready to go back to work when I did but I had no choice about it. My finances dictated I go back. In fact, my finances are dictating so much of my stress right now, I've been down this road SO many times in my life that in many ways, I should know that I will get it straightened out somehow but also I should know how to prevent this from happening so much! I have a degree in finance for the love of Pete. I should be more financially secure than I am. I have to keep reminding myself that it's only been 5 years since I've been completely on my own and that I have come a long way. I still just have so much further to go and at the age of 45 it irritates me.
So I went back to work. Keep in mind, I only started this job in February. I got ONE day to train and then was on my own. I had no clue. I did the best I could. Then not even six months later, I got my diagnosis, had my surgery and started treatment. I hung in there the best I could through all the changes in the firm and our department and my treatment. Then I had to go on leave because my body couldn't take it anymore. I come back to work to MORE changes and things I have no clue about and when I can't perform (who could after all this?), I get a bad review. And again--I haven't even been there a year yet.
What kind of employer does that? I left thinking I had their support but came back to find that I really need to be going elsewhere as soon as possible. And I STILL HAVE appointments etc. to work around with an unsympathetic supervisor. It's incredibly stressful.
So I think about my financial issues and I start to panic. And I push my ex. He was SO good to me during my treatment it made me feel like I STILL loved him and wish I had never left him in the first place. And we still have these three amazing kids together. And we still have things in common. So we still spend time together.
But I'm scared to death--scared of financial ruin, scared of starting over, scared of my cancer coming back, scared of the kids growing up and being gone, scared of being alone. And I panic. And I push. HUGE mistake. I pushed him away and now I just have this desperate feeling that I just need to be around him to feel calm.
I don't know and I know I'm rambling. And my counselor says this is all normal when you get cancer. You wonder how different things would be if you still had your family. And don't get me wrong, my mom, sisters and friends all rallied around me when I was going through treatment and it was amazing. And Jeff was wonderful and he gave me hope. But somehow it still didn't look like I thought it would have, especially if I had still been married.
I know I should feel grateful and I do. But I also can't shake this hopeless feeling. Not right now. I'm trying. I've lost control a few times and hurt people that I love. I don't want to do that. I don't want to be a crazy lunatic bitch. I want to be a good person. A person that attracts people. A person that others want to be around. Right now I think most people are afraid of me.
I wonder if the radiation destroyed the effectiveness of my anti-depressants. Or if it's messed up my hormones. Or if it has something to do with the vitamin regimen that I was on pre-cancer and they took me off of because it was counter-productive to the radiation. I see my doctor Wednesday and I can't wait to tell her all this and pray that she can help in some way. I don't have time for the nutrition and holistic stuff to work. I'm under so much pressure and need something that will work now. It may be a quick fix. But until I have the time to fix it for real, that's what I need.
Please pray for me. Pray that I will get the answers and help I need from the doctor. Pray that I can stop feeling so emotional an hopeless all the time. Pray that God will speak to my children's hearts and let them know how much I love them and that I need them right now. That I want to be a mom they can be proud of. That I will get it together and hopefully soon. PLEASE pray these things for me.
Tuesday, October 20, 2015
One week post treatment
***********WARNING***********may include TMI******************************
And for the most part, I still don't feel any better. They said it would take about 2 weeks before some of this stuff would start to subside but I had hoped for sooner. I think I could deal with the throat pain if I would just stop coughing. My mouth and throat are full of thick, gooey, mucus that I can't seem to get rid of. That's partly due to the cancer and partly due to the fact that I can't eat yet. I've tried. I tried a milkshake from Jack's and a french fry and had to give it all to Jeff and Kayti. Nothing tastes right. I can't even drink water anymore because the taste is so tainted with mucus!
The doctors are pretty much useless now. I don't think they get it. They look at me astonishingly like I'm some freak from outer space because none of their suggested crap works. Hey, maybe the issues is you have never had this yourself so you don't have a clue what works and what doesn't. No, the magic mouthwash doesn't work. It's in my mouth for a few seconds and as soon as I spit it out..no lasting effects. The pain pills, I have apparently built up an immunity to. No pharmacy around here keeps anything stronger in pill form and the liquid form, I can't tell that it's any strong and most certainly it's more expensive. The same goes for the narcotic cough med. They give you this tiny little bottle. I go through it in a day and insurance thinks it's supposed to last me a month. So they don't want to pay for it. I finally got special approval after I went ahead and pay $60 for it! I'm in no hurry to try and do that again when it doesn't work any better than anything over the counter anyway.
The next suggestion was Mucinex. Sounds like it will get rid of mucus right? Well, not so much. Kayti bought my first bottle of it and it was blue. The blue tore my stomach up. So I bought pills to go in my pill crusher with everything else. Somehow these little suckers wouldn't crush up finely enough to go thru my feeding tube. So I attempted to just swallow one and I about choked. So back to robitussin DM which works okay but it doesn't last long.
They also said to keep my throat moist but I actually get more relief when I don't. I just have to be careful about dehydrating. So I push a lot of water thru my tube.
Those are normal days. Bad days are when I get to coughing so hard I pee myself. And yes, I know I need to address that with my GYN. I had planned on it. I had planned on also have uterine ablation so I would stop having periods, particularly now that they have gotten to be two weeks long every other week! Putting up with that is just extra fun!
I also get to coughing so badly sometimes I throw up. This happens about every other day but when it does, it happens 2-3 times a day usually. Again, so much fun.
The other thing is boredom. I know I should be crocheting or reading and I need to try and push myself to do more of those things so this time off work isn't a complete waste. But the pain med and nerve meds do make me sleepy. So there's a lot of waiting to fall asleep and then waking myself up when I wake up.
Some days I do manage to do a little more. Yesterday, I did a boatload of laundry, bathed both dogs cleaned the kitchen, changed the sheets on my bed, vacuumed my room and cleaned out my closet. Today, I've done a lot of crying and sleeping. I did manage to go on a short walk with Jeff this evening but I couldn't go far. And that pisses me off! I want to exercise and sweat all these toxins out of me so I can feel normal again. But I couldn't breath and I certainly didn't want to throw up at Cosby Lake, I mean my room might get jealous that it missed out on a puke session!
And this place underneath my ear will not heal. So I named it. I have met a wonderful bunch of friends on facebook. We call ourselves the ACC Warriors and all of us have or have had some form of ACC. They have been a tremendous help and encouragement to me. Only they know what I'm truly going through. But my friend named her ear wound "Earholio" and yes it was inspired by Beavis and Butthead's Cornholio. You may need to google that. So as a 80/90 MTV child myself, I went with it. My wound is called Burnholio because it looks like a burn hold. I have cared and cared and cared for Burnholio but he will not go away.
I mentioned that I have cried a lot today. I don't understand where all this is coming from. I take my Celexa and they even have me on ativan. I should not be so emotional. But it seems I cry a lot more than I ever used to.
Today I got to thinking about when my kids were little. We lived in a little house in Tarrant and we were so happy. That was probably the happiest time of my life. I didn't realize it then. I was trying to work, take care of a sick husband and finish my degree. I was so stressed out and I know I didn't take the time I needed to and should have to enjoy those little faces. I did the best I could but I still find myself wanting a do-over I'll never get.
When we moved out to Clay, my life was all about them. I was all involved in everything they did and even home schooled the girls for six years. I loved every minute. And I would do it all over again because it just went by so fast. And I'll never get it back.
Sometimes I think if I could put things back together with their father, then everything would be okay. Sometimes I feel like I still love him. But maybe that's the cancer/cancer treatment talking. I know he cares for me. And he's been really good to me throughout this cancer stuff.
And then I see people going through worse than I am and I start to have crises of faith. Why God? I know all the biblical answers so don't bother. But my mind and my heart are two different things. I may know in my mind that God works in mysterious ways, that He has a pan, that the world is a fallen place because of original sin blah blah blah. It still breaks my heart.
And on that note, as I am missing so many other things I love to do in life, I am really missing my outreach work. I need to be well so I can serve the Lord by serving others. I can't stand being stuck in the house afraid to do anything because I may get sick, lose my breath (or lunch) or just wear out. I need to be done with this "healing" and I'm running out of patience.
So yeah that's what going on in my crazy amazing life right now. Hopefully tomorrow will be better.
And for the most part, I still don't feel any better. They said it would take about 2 weeks before some of this stuff would start to subside but I had hoped for sooner. I think I could deal with the throat pain if I would just stop coughing. My mouth and throat are full of thick, gooey, mucus that I can't seem to get rid of. That's partly due to the cancer and partly due to the fact that I can't eat yet. I've tried. I tried a milkshake from Jack's and a french fry and had to give it all to Jeff and Kayti. Nothing tastes right. I can't even drink water anymore because the taste is so tainted with mucus!
The doctors are pretty much useless now. I don't think they get it. They look at me astonishingly like I'm some freak from outer space because none of their suggested crap works. Hey, maybe the issues is you have never had this yourself so you don't have a clue what works and what doesn't. No, the magic mouthwash doesn't work. It's in my mouth for a few seconds and as soon as I spit it out..no lasting effects. The pain pills, I have apparently built up an immunity to. No pharmacy around here keeps anything stronger in pill form and the liquid form, I can't tell that it's any strong and most certainly it's more expensive. The same goes for the narcotic cough med. They give you this tiny little bottle. I go through it in a day and insurance thinks it's supposed to last me a month. So they don't want to pay for it. I finally got special approval after I went ahead and pay $60 for it! I'm in no hurry to try and do that again when it doesn't work any better than anything over the counter anyway.
The next suggestion was Mucinex. Sounds like it will get rid of mucus right? Well, not so much. Kayti bought my first bottle of it and it was blue. The blue tore my stomach up. So I bought pills to go in my pill crusher with everything else. Somehow these little suckers wouldn't crush up finely enough to go thru my feeding tube. So I attempted to just swallow one and I about choked. So back to robitussin DM which works okay but it doesn't last long.
They also said to keep my throat moist but I actually get more relief when I don't. I just have to be careful about dehydrating. So I push a lot of water thru my tube.
Those are normal days. Bad days are when I get to coughing so hard I pee myself. And yes, I know I need to address that with my GYN. I had planned on it. I had planned on also have uterine ablation so I would stop having periods, particularly now that they have gotten to be two weeks long every other week! Putting up with that is just extra fun!
I also get to coughing so badly sometimes I throw up. This happens about every other day but when it does, it happens 2-3 times a day usually. Again, so much fun.
The other thing is boredom. I know I should be crocheting or reading and I need to try and push myself to do more of those things so this time off work isn't a complete waste. But the pain med and nerve meds do make me sleepy. So there's a lot of waiting to fall asleep and then waking myself up when I wake up.
Some days I do manage to do a little more. Yesterday, I did a boatload of laundry, bathed both dogs cleaned the kitchen, changed the sheets on my bed, vacuumed my room and cleaned out my closet. Today, I've done a lot of crying and sleeping. I did manage to go on a short walk with Jeff this evening but I couldn't go far. And that pisses me off! I want to exercise and sweat all these toxins out of me so I can feel normal again. But I couldn't breath and I certainly didn't want to throw up at Cosby Lake, I mean my room might get jealous that it missed out on a puke session!
And this place underneath my ear will not heal. So I named it. I have met a wonderful bunch of friends on facebook. We call ourselves the ACC Warriors and all of us have or have had some form of ACC. They have been a tremendous help and encouragement to me. Only they know what I'm truly going through. But my friend named her ear wound "Earholio" and yes it was inspired by Beavis and Butthead's Cornholio. You may need to google that. So as a 80/90 MTV child myself, I went with it. My wound is called Burnholio because it looks like a burn hold. I have cared and cared and cared for Burnholio but he will not go away.
I mentioned that I have cried a lot today. I don't understand where all this is coming from. I take my Celexa and they even have me on ativan. I should not be so emotional. But it seems I cry a lot more than I ever used to.
Today I got to thinking about when my kids were little. We lived in a little house in Tarrant and we were so happy. That was probably the happiest time of my life. I didn't realize it then. I was trying to work, take care of a sick husband and finish my degree. I was so stressed out and I know I didn't take the time I needed to and should have to enjoy those little faces. I did the best I could but I still find myself wanting a do-over I'll never get.
When we moved out to Clay, my life was all about them. I was all involved in everything they did and even home schooled the girls for six years. I loved every minute. And I would do it all over again because it just went by so fast. And I'll never get it back.
Sometimes I think if I could put things back together with their father, then everything would be okay. Sometimes I feel like I still love him. But maybe that's the cancer/cancer treatment talking. I know he cares for me. And he's been really good to me throughout this cancer stuff.
And then I see people going through worse than I am and I start to have crises of faith. Why God? I know all the biblical answers so don't bother. But my mind and my heart are two different things. I may know in my mind that God works in mysterious ways, that He has a pan, that the world is a fallen place because of original sin blah blah blah. It still breaks my heart.
And on that note, as I am missing so many other things I love to do in life, I am really missing my outreach work. I need to be well so I can serve the Lord by serving others. I can't stand being stuck in the house afraid to do anything because I may get sick, lose my breath (or lunch) or just wear out. I need to be done with this "healing" and I'm running out of patience.
So yeah that's what going on in my crazy amazing life right now. Hopefully tomorrow will be better.
Thursday, October 8, 2015
Meltdowns and big decisions
So again this week I became faced with a major dilemma.
It started out as a routine assignment that seemed simple enough--go to this other website, follow the directions for a simulation project. I did that. I did it several times. For some reason it would not register that I'd done it.
All the while I'm stressing over homework and other things I don't understand and how in the world we're supposed to motivate some slacker teammates to help finish a project. etc. etc.
And at the same time, my throat hurts, I can't keep anything down, not sleeping well, yada yada yada
So this morning I get a message that I've been kicked off the team because I didn't do those silly little steps in the rehearsal simulation. But. I. Did. I swear I did.
I'm on the way to treatment when I'm reading this message so I start bawling and my mom is freaking, what's wrong what's wrong. I call my classmate and friend, Meagan to get her to look online for me because my smart phone really isn't all that smart. She called the professor for me and everything but the more freaked out I because the more the bug someone put in my ear last week about dropping started chirping louder.
We go in and my mom grabs the nurse to give me something to help me calm down. I have literally been praying and thinking about it all afternoon. Everyone is right. I do need to drop. I need to focus 100% completely and totally on my health right now. I thought by taking a leave of absence from work I'd have more time to pile up in the bed with the books but it hasn't worked out that way. I haven't had the energy to life my phone, let alone a book. I do what I have to do but I don't go above and beyond and in grad school, you have to go above and beyond!
I have really struggled with this decision and the consequences it will have. But I keep leaning on God's word that "instead of shame, I share receive a double portion" and "anything taken from me (by this devil of a disease, Cancer), I'll receive back. I'm counting on that.
Right now, it has to be about me and God.
It started out as a routine assignment that seemed simple enough--go to this other website, follow the directions for a simulation project. I did that. I did it several times. For some reason it would not register that I'd done it.
All the while I'm stressing over homework and other things I don't understand and how in the world we're supposed to motivate some slacker teammates to help finish a project. etc. etc.
And at the same time, my throat hurts, I can't keep anything down, not sleeping well, yada yada yada
So this morning I get a message that I've been kicked off the team because I didn't do those silly little steps in the rehearsal simulation. But. I. Did. I swear I did.
I'm on the way to treatment when I'm reading this message so I start bawling and my mom is freaking, what's wrong what's wrong. I call my classmate and friend, Meagan to get her to look online for me because my smart phone really isn't all that smart. She called the professor for me and everything but the more freaked out I because the more the bug someone put in my ear last week about dropping started chirping louder.
We go in and my mom grabs the nurse to give me something to help me calm down. I have literally been praying and thinking about it all afternoon. Everyone is right. I do need to drop. I need to focus 100% completely and totally on my health right now. I thought by taking a leave of absence from work I'd have more time to pile up in the bed with the books but it hasn't worked out that way. I haven't had the energy to life my phone, let alone a book. I do what I have to do but I don't go above and beyond and in grad school, you have to go above and beyond!
I have really struggled with this decision and the consequences it will have. But I keep leaning on God's word that "instead of shame, I share receive a double portion" and "anything taken from me (by this devil of a disease, Cancer), I'll receive back. I'm counting on that.
Right now, it has to be about me and God.
Monday, October 5, 2015
So the decision is....
I'm going to finish treatment.
If you're just now tuning in, I had been contemplating stopping my radiation treatments for several reasons:
1. They can't get my pain and other symptoms under control.
2. I found descrepencies in my records about the number of treatments I was supposed to actually be getting.
3. I was misled about the dosage being turned down after I would up in the hospital for a feeding tube.
4. A mistake was made in a prescription.
5. I just didn't trust them anymore.
Of course the opinions of what I should/shouldn't do were split down the middle. I had many people tell me I should stop and stop immediately because people have died before from too mach radiation, the treatment seems to be much worse than the disease itself, and I needed to get another opinion/switch doctors, etc.
There were others though, telling me to stick with it, it was only a few more, if I stopped now, the previous 25 and everything done up to this point would be a wast of time. I had several high risk factors, etc. etc.
I prayed and prayed and every time I would come to a decision, something or someone would come along and blow me out of the water and I'd be right back to now knowing what to do.
So I decided to go back to square 1--when I first found what turned out to be the cancer.
I first felt this knot around December 2013. I had it checked out the next month by a popular Trussville doctor (if you would like her name, please private message me) only to be told it was nothing to worry about. It was just a swollen lymph node from being sick over the winter (which I hadn't been sick and I told her that) that would most likely go down in a few months. It didn't.
A few months later, I went to the new MedHelp on Chalkville Mountain Road. Again, I was told the same thing but this time I did get a prescription of useless antibiotics.
A few months after that, I'd begun seeing Melanie Miller at Birmingham Integrative. Her third son was in my class when I was still teaching preschool at Trussville FUMC and I'd always liked her. But I knew being an integrative doctor, she was more likely to lean torward that "healy feely" stuff that I don't much care for. But then someone told me she gives you the choice--meds or holistic so I made and appointment to establish care, She started by trying to help me get my weigh under control, sleep issues, etc. But then on one visit I told her about the knot. She couldn't feel it herself which she said is not uncommon. We can always feel things from the inside more than from the outside but she ordered an ultrasound anyway. A week later I had the ultrasound and the technician said there was something there I needed to get looked at further. So then I was referred to Dr .Jebeles at Southern ENT. He did a scan which came back clean and a biopsy which came back benign but he still wanted me to see a specialist at UAB, Dr. Carroll an otolaryngologist. Dr. Carroll, recommended that the tumor, though small and benign come on out because it would only get bigger and the bigger they get the more difficult they are to remove because they start to obstruct facial nerves. So I said, let's do it.
A few weeks later, during surgery, he thought it didn't look right and had it sent to the lab for preliminary results. The lab guys all agreed--it looked like cancer. So while still under anethesia--not knowing any of this--Dr. Carroll removed a larger margin of tissue and some additional lymph nodes. I was told all of this when I woke up and as you can imagine, it was quite upsetting. I prayed for the next two weeks that they were wrong but they were right. Malignant Adenoid Cystic Carcinoma an uncommon form of malignant neoplasm that arises within secretory glands, most commonly the major and minor salivary glands of the head and neck. It was a good thing I had went ahead and head the surgery, that I'd pressed until I found someone to actually look at it instead of ASSUMING they already knew it wasn't anything major. It was a good thing that I actually found Melanie Miller.
And so today I went back to her to tell her everything and get her opinion about what I should do. Knowing that she practices western medicine but isn't a disciple--in other words, she knows its limitations. I knew she wouldn't be gung ho to sell me on the radiation. I knew she would be honest with me if there were alternatives or if I was putting my body through too much.
She pulled up all the path reports and told me I should try to finish. She said there were things she could do to help me get through it if I need to and would be more than willing to help but since I had made it this far, she really felt it would be in my best interest to finish. That was all I needed to hear.
I went for my 26th treatment today. I got refills on meds (and that's a whole other blog, my opinion about pharmacies and insurance plans! ugh!) and came home to rest. I'm marking off the days and planning my "rign the bell" party because it's getting close!
If you're just now tuning in, I had been contemplating stopping my radiation treatments for several reasons:
1. They can't get my pain and other symptoms under control.
2. I found descrepencies in my records about the number of treatments I was supposed to actually be getting.
3. I was misled about the dosage being turned down after I would up in the hospital for a feeding tube.
4. A mistake was made in a prescription.
5. I just didn't trust them anymore.
Of course the opinions of what I should/shouldn't do were split down the middle. I had many people tell me I should stop and stop immediately because people have died before from too mach radiation, the treatment seems to be much worse than the disease itself, and I needed to get another opinion/switch doctors, etc.
There were others though, telling me to stick with it, it was only a few more, if I stopped now, the previous 25 and everything done up to this point would be a wast of time. I had several high risk factors, etc. etc.
I prayed and prayed and every time I would come to a decision, something or someone would come along and blow me out of the water and I'd be right back to now knowing what to do.
So I decided to go back to square 1--when I first found what turned out to be the cancer.
I first felt this knot around December 2013. I had it checked out the next month by a popular Trussville doctor (if you would like her name, please private message me) only to be told it was nothing to worry about. It was just a swollen lymph node from being sick over the winter (which I hadn't been sick and I told her that) that would most likely go down in a few months. It didn't.
A few months later, I went to the new MedHelp on Chalkville Mountain Road. Again, I was told the same thing but this time I did get a prescription of useless antibiotics.
A few months after that, I'd begun seeing Melanie Miller at Birmingham Integrative. Her third son was in my class when I was still teaching preschool at Trussville FUMC and I'd always liked her. But I knew being an integrative doctor, she was more likely to lean torward that "healy feely" stuff that I don't much care for. But then someone told me she gives you the choice--meds or holistic so I made and appointment to establish care, She started by trying to help me get my weigh under control, sleep issues, etc. But then on one visit I told her about the knot. She couldn't feel it herself which she said is not uncommon. We can always feel things from the inside more than from the outside but she ordered an ultrasound anyway. A week later I had the ultrasound and the technician said there was something there I needed to get looked at further. So then I was referred to Dr .Jebeles at Southern ENT. He did a scan which came back clean and a biopsy which came back benign but he still wanted me to see a specialist at UAB, Dr. Carroll an otolaryngologist. Dr. Carroll, recommended that the tumor, though small and benign come on out because it would only get bigger and the bigger they get the more difficult they are to remove because they start to obstruct facial nerves. So I said, let's do it.
A few weeks later, during surgery, he thought it didn't look right and had it sent to the lab for preliminary results. The lab guys all agreed--it looked like cancer. So while still under anethesia--not knowing any of this--Dr. Carroll removed a larger margin of tissue and some additional lymph nodes. I was told all of this when I woke up and as you can imagine, it was quite upsetting. I prayed for the next two weeks that they were wrong but they were right. Malignant Adenoid Cystic Carcinoma an uncommon form of malignant neoplasm that arises within secretory glands, most commonly the major and minor salivary glands of the head and neck. It was a good thing I had went ahead and head the surgery, that I'd pressed until I found someone to actually look at it instead of ASSUMING they already knew it wasn't anything major. It was a good thing that I actually found Melanie Miller.
And so today I went back to her to tell her everything and get her opinion about what I should do. Knowing that she practices western medicine but isn't a disciple--in other words, she knows its limitations. I knew she wouldn't be gung ho to sell me on the radiation. I knew she would be honest with me if there were alternatives or if I was putting my body through too much.
She pulled up all the path reports and told me I should try to finish. She said there were things she could do to help me get through it if I need to and would be more than willing to help but since I had made it this far, she really felt it would be in my best interest to finish. That was all I needed to hear.
I went for my 26th treatment today. I got refills on meds (and that's a whole other blog, my opinion about pharmacies and insurance plans! ugh!) and came home to rest. I'm marking off the days and planning my "rign the bell" party because it's getting close!
Sunday, October 4, 2015
Still breathing...
I had the feeding tube put in September 19 at UAB Hospital. It went relatively well, despite all my fears and just for added fun starting my cycle 2 days before and lasted for 17 days! Sorry if TMI. I had planned on having that taken care of once and for all before I found out I would be dealing with cancer. Believe me, it's next on the list.
My precious mother stayed with me in the hospital that night and I felt so badly for her. I think hospitals purposely make it uncomfortable so that people won't want to stay overnight with loved ones. I get it. Some people can be in the way and bothersome. But there are some families like mine that you wouldn't get us out with tar and a pitchfork so hospital admins might as well just get over it. It turned out I really needed my mom. I already had NO voice. No one could understand me but her. In surgery, they put the IV right in the crease of my elbow so every time I bent my arm the alarm would go off and they would have to come in and do something with it. I was in a semi-private room also which for this procedure I din't mind but still, I needed my mama! All she had to sleep on was a slightly reclining easy chair. The nurse brought her a pillow and blanket but I could tell she was very uncomfortable. I love her so much for going through that for me. They showed us how to administer feedings, pain meds, clean it and everything and gave us a lot of information to read and we were on our way.
The rest of the weekend was a blur. I had a radiation treatment on Monday and went back to work Tuesday. I tried to resume some school stuff but I was still either coughing too badly, throat hurting too much, busy messing with the tube, couldn't breathe, or something. It seems like everything they attempt to do to make me better either doesn't work or ends up having its own set of issues. Most days I can't concentrate on anything . I'm very emotional, easily agitated and so I decided to just go ahead and take a leave of absence from work. I worked the rest of the week, Tuesday-Friday. My sweet boss who is the CFO of the firm is a 5 year breast cancer survivor and one of my biggest advocates. She literally held my and through all the HR stuff and said for me not to worry about anything but getting better.
So I returned to the doctor Monday again with mom because I'm throwing up again and dehydrated. They gave me steroids, fluids and another treatment and when I asked them about turning down the dosage like they had told me they were and the doctor looked at me puzzled and then her expression changed. Something like, "Oh crap, I forgot". But she managed to stammer out a yes, yes, oh yes.
I told my mom I don't believe them. It's not getting any better and after the mixup with the prescription (she wrote me a presciption for a medicine that does not exist! I chased all over Birmingham looking like some junkie in search of a score!).
So the next day when I went in for treatment, I demanded to see my records. I wanted the to show me WHERE the dosage had been turned down and they couldn't. They showed me in one place where a percentage went from 100 to 105 (and I realize I dont have a MD but I do have a MBA so I think I can't count so WHERE IS 100 to 105 A DECREASE?????
I was so upset and I told my mom that told them I quit treatment. Of course they told my mom to encourage me to stay with it, that I was harming myself if I didn't , that all of what they've already done will be for nothing etc.
Mom told them she would try but that they are
1) dragging it out by not letting me do double
2) lied about the rx
3) lied about the dosage
4) can't get my pain under control
5) can't keep anything down
6) almost constantly dehydrated
7) now I'm throwing up blood and tissue
8) just do not trust them anymore
9) cant stop coughing
10) they cant guarantee me this will work anyway
I have been in prayer, deep prayer, about all of this. I have friends and family telling me to keep going, finish. At least you know you did all you could. I have an equal number telling me it's just not worth it. Radiation actually kills people and they are probably frying my throat.
I will think I have made up my mind and have God's perfect peace about it and then something will happen, like my mom will call saying my doctor thinks it's a big mistake to stop. (of course they do)
I am NOT into that healy feely shit like some of ya'll are. There may be some truth to it but frankly I'm just too lazy. I'm not even going to buy organic produce let alone grow it myself! Vinegar and baking soda does NOT smell as clean as lysol and bleach and tree bark and kiwis do NOT taste as good as steak, fluffy white potatoes and cake! And don't get me started about the oils! I'll buy your arguments all day long, especially where it pertains to chemicals. But I know myself and I know I"m not likely to do it just now.
I'm seeing my regular doctor tomorow. I am praying that she will do a scan and see how things look and give me her opinion.
It's not that I can't take it. If I thought it were working, I'd be all about it. I just don't have any faith in them anymore. They only faith I have is in my Great Physician and He is my ultimate Healer.
My precious mother stayed with me in the hospital that night and I felt so badly for her. I think hospitals purposely make it uncomfortable so that people won't want to stay overnight with loved ones. I get it. Some people can be in the way and bothersome. But there are some families like mine that you wouldn't get us out with tar and a pitchfork so hospital admins might as well just get over it. It turned out I really needed my mom. I already had NO voice. No one could understand me but her. In surgery, they put the IV right in the crease of my elbow so every time I bent my arm the alarm would go off and they would have to come in and do something with it. I was in a semi-private room also which for this procedure I din't mind but still, I needed my mama! All she had to sleep on was a slightly reclining easy chair. The nurse brought her a pillow and blanket but I could tell she was very uncomfortable. I love her so much for going through that for me. They showed us how to administer feedings, pain meds, clean it and everything and gave us a lot of information to read and we were on our way.
The rest of the weekend was a blur. I had a radiation treatment on Monday and went back to work Tuesday. I tried to resume some school stuff but I was still either coughing too badly, throat hurting too much, busy messing with the tube, couldn't breathe, or something. It seems like everything they attempt to do to make me better either doesn't work or ends up having its own set of issues. Most days I can't concentrate on anything . I'm very emotional, easily agitated and so I decided to just go ahead and take a leave of absence from work. I worked the rest of the week, Tuesday-Friday. My sweet boss who is the CFO of the firm is a 5 year breast cancer survivor and one of my biggest advocates. She literally held my and through all the HR stuff and said for me not to worry about anything but getting better.
So I returned to the doctor Monday again with mom because I'm throwing up again and dehydrated. They gave me steroids, fluids and another treatment and when I asked them about turning down the dosage like they had told me they were and the doctor looked at me puzzled and then her expression changed. Something like, "Oh crap, I forgot". But she managed to stammer out a yes, yes, oh yes.
I told my mom I don't believe them. It's not getting any better and after the mixup with the prescription (she wrote me a presciption for a medicine that does not exist! I chased all over Birmingham looking like some junkie in search of a score!).
So the next day when I went in for treatment, I demanded to see my records. I wanted the to show me WHERE the dosage had been turned down and they couldn't. They showed me in one place where a percentage went from 100 to 105 (and I realize I dont have a MD but I do have a MBA so I think I can't count so WHERE IS 100 to 105 A DECREASE?????
I was so upset and I told my mom that told them I quit treatment. Of course they told my mom to encourage me to stay with it, that I was harming myself if I didn't , that all of what they've already done will be for nothing etc.
Mom told them she would try but that they are
1) dragging it out by not letting me do double
2) lied about the rx
3) lied about the dosage
4) can't get my pain under control
5) can't keep anything down
6) almost constantly dehydrated
7) now I'm throwing up blood and tissue
8) just do not trust them anymore
9) cant stop coughing
10) they cant guarantee me this will work anyway
I have been in prayer, deep prayer, about all of this. I have friends and family telling me to keep going, finish. At least you know you did all you could. I have an equal number telling me it's just not worth it. Radiation actually kills people and they are probably frying my throat.
I will think I have made up my mind and have God's perfect peace about it and then something will happen, like my mom will call saying my doctor thinks it's a big mistake to stop. (of course they do)
I am NOT into that healy feely shit like some of ya'll are. There may be some truth to it but frankly I'm just too lazy. I'm not even going to buy organic produce let alone grow it myself! Vinegar and baking soda does NOT smell as clean as lysol and bleach and tree bark and kiwis do NOT taste as good as steak, fluffy white potatoes and cake! And don't get me started about the oils! I'll buy your arguments all day long, especially where it pertains to chemicals. But I know myself and I know I"m not likely to do it just now.
I'm seeing my regular doctor tomorow. I am praying that she will do a scan and see how things look and give me her opinion.
It's not that I can't take it. If I thought it were working, I'd be all about it. I just don't have any faith in them anymore. They only faith I have is in my Great Physician and He is my ultimate Healer.
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