***********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.
Tuesday, October 20, 2015
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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