I asked the tech at radiation to say "Muhahahahhah" In an evil voice before they zapped me. She humored me. It's Halloween after all.
Thursday, October 31, 2013
Happy Halloween!
Hope everyone got enough trick or treating in before the rain came down... My kids did pretty well, I think people wanted to get rid of their candy. :)
Wednesday, October 30, 2013
October 30-really?
October 30th...I cannot believe how fast this month has flown by.... What have I done? Where does the time go? Well, I started radiation and I do what I do everyday, work, mom, etc. Normal stuff. Today was treatment 6 I think, is that bad that I have already lost count? Pretty sure I started last Wednesday...that would make this 6. Only a mere 27 to go! Damn that is a huge number. It is going faster, they seem to be lining me up quicker and getting down to the zapping. Today I met with the doctor, she came to check out my skin and see how I am doing. Skin is fine. I talked to her and the nurse about my sleep issue and she suggested yoga. She also said that the other things I am trying are all worth a shot. I like her, she is very kind-she has a warm demeanor. The nurse who helped me get all situated with radiation is also a really kind person. She talked to me for awhile and let me just, well...talk. She is very understanding and I didn't feel rushed or that I was bothering her. I can be an open book, a sappy novel, and I want to stop that...but I need to get some of the crud out. I feel sorry for those who get stuck listening to me...but they are so good at it. We talked about the positives and how I am trying to take back some control of my mind and body...and that I am allowed to lose it and grieve for what I have lost...body, mind, dignity...
After last night's massage, I am really focused on cleaning my mind and taking back my body. I am visualizing the me on the other side, and I look happy, healthy and like the old me (but with wavy hair). I have to keep my eye on the prize.
I am sad that it is raining and that Halloween may be a bust this year. It looks like we will be cancelling our deck party. I am not up for hosting it indoors, so we will plan something else. I hope it just sprinkles and the kids can at least go trick or treating for a bit. Marley woke up all mad because of tomorrow's forecast.
Tonight both kids carved pumpkins...alone. Dane did his alone, but he is 12 so that is expected. Marley did hers alone which was a bit of a risk. She made a "pumkin plan" and stuck to it. She wouldn't let us in the kitchen where she was working. When she was done she disassembled some headband that lit up, and wired up her pumpkin up to have a strobe light. Then she invited us to the kitchen, in the dark, to see her work. It was pretty cute, although we all almost had seizures with the strobe!
Dane is at play practice, and we are chilling. I want to go to bed, but it is a bit early for that. I am not doing well with it getting dark so darn early. Brad is bad with the seasonal changes and I can see that I am getting that way also. If it is going to be dark we need snow, the reflection makes it lighter and therefore better.
Enough for one day. Have a fun Halloween!
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Dane
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Marley
After last night's massage, I am really focused on cleaning my mind and taking back my body. I am visualizing the me on the other side, and I look happy, healthy and like the old me (but with wavy hair). I have to keep my eye on the prize.
I am sad that it is raining and that Halloween may be a bust this year. It looks like we will be cancelling our deck party. I am not up for hosting it indoors, so we will plan something else. I hope it just sprinkles and the kids can at least go trick or treating for a bit. Marley woke up all mad because of tomorrow's forecast.
Tonight both kids carved pumpkins...alone. Dane did his alone, but he is 12 so that is expected. Marley did hers alone which was a bit of a risk. She made a "pumkin plan" and stuck to it. She wouldn't let us in the kitchen where she was working. When she was done she disassembled some headband that lit up, and wired up her pumpkin up to have a strobe light. Then she invited us to the kitchen, in the dark, to see her work. It was pretty cute, although we all almost had seizures with the strobe!
Dane is at play practice, and we are chilling. I want to go to bed, but it is a bit early for that. I am not doing well with it getting dark so darn early. Brad is bad with the seasonal changes and I can see that I am getting that way also. If it is going to be dark we need snow, the reflection makes it lighter and therefore better.
Enough for one day. Have a fun Halloween!
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Dane.JPG)
MarleyTuesday, October 29, 2013
Alternatives
I was just texting with my friend Julie, who also recently finished treatment, and is working on the hair growing end of things...that I need to update my picture with all of my new luscious hair! It has grown quite a bit. People say it looks like it is getting curly in the back, hmm. If I end up with lovely waves, it will be a bonus. Right now I wear it in a faux hawk each day to school. Why not, plus I like it and it is fun. I can't update the picture now, I am makeup free and it is the end of a long day. Not pretty.
Had radiation with xrays today, which makes the process twice as long. They do xrays to make sure they are always in the right fields. I don't even listen anymore. I just lay there stony still and zone out. Came home-changed and went to get a massage. I went to a chiropractor's office for this-rather than a walk in place or a salon. I don't want to tell my story to a different random masseuse each time I go, so I thought establishing someone near home and at less of a foofy place would be a good idea. It was.
I went a few minutes early because I knew I would have papers to fill out. I did. I met the masseuse and she was willing to listen to the short version of my story. (Although she said I didn't need to make it short, but I wanted it short!) She was a very good listener and really had a way of making me comfortable. She said she believed that I needed a light, more therapeutic first massage-rather than getting in there good and beating me up. I agreed. Usually I cannot stand when the masseuse talks to me, I am there to relax, not have a conversation. However, she was different. She talked to me in a way that I needed, she was very understanding and made me think of things that I thought were helpful. She was part therapist and part masseuse. She was what I needed right now. It was a fateful match that I picked this place and she was assigned to me. She said her method was a little unconventional for the chiropractor's office, but I was open to her new age thinking. I am open to just about anything that may help me get my body back on track, clear the gunk out of my head and help me sleep. It was the nicest manipulation of my body in months. No needles, no shifting, no drawing, nothing bad.
I made an appointment for two weeks from tonight to go back.
I also made an appointment for a naprapath for next Tuesday. She is over in Wheaton, but I would like to give her a whirl. I know it is a bit out there (most people think naturopath, or haven't heard of one at all), but I had one experience with a naprapath, and it was very successful. I have an initial consultation with treatment focused on insomnia. She thought that 3-4 sessions may be what I need. Since it will be coming out of pocket, that sounds reasonable. I also have an email in to an acupuncturist to see if he thinks he could help. Alternative medicine here I come.
Massage, naprapathic doc and acupuncture all sound good. Let's hope they can deliver!
One of the things the masseuse asked me was, "What does the finished you look like-when you will be happy with how you look and feel? What will you be doing? What does this future look like?" I liked the question. Made me think. The first image that popped into my head was me, with shoulder length, wavy hair, new boobs, thinner, in a fabulous place with my family on vacation, laughing and having fun. That is what I saw. That is what I am making my goal for next summer. Goals are good.
Had radiation with xrays today, which makes the process twice as long. They do xrays to make sure they are always in the right fields. I don't even listen anymore. I just lay there stony still and zone out. Came home-changed and went to get a massage. I went to a chiropractor's office for this-rather than a walk in place or a salon. I don't want to tell my story to a different random masseuse each time I go, so I thought establishing someone near home and at less of a foofy place would be a good idea. It was.
I went a few minutes early because I knew I would have papers to fill out. I did. I met the masseuse and she was willing to listen to the short version of my story. (Although she said I didn't need to make it short, but I wanted it short!) She was a very good listener and really had a way of making me comfortable. She said she believed that I needed a light, more therapeutic first massage-rather than getting in there good and beating me up. I agreed. Usually I cannot stand when the masseuse talks to me, I am there to relax, not have a conversation. However, she was different. She talked to me in a way that I needed, she was very understanding and made me think of things that I thought were helpful. She was part therapist and part masseuse. She was what I needed right now. It was a fateful match that I picked this place and she was assigned to me. She said her method was a little unconventional for the chiropractor's office, but I was open to her new age thinking. I am open to just about anything that may help me get my body back on track, clear the gunk out of my head and help me sleep. It was the nicest manipulation of my body in months. No needles, no shifting, no drawing, nothing bad.
I made an appointment for two weeks from tonight to go back.
I also made an appointment for a naprapath for next Tuesday. She is over in Wheaton, but I would like to give her a whirl. I know it is a bit out there (most people think naturopath, or haven't heard of one at all), but I had one experience with a naprapath, and it was very successful. I have an initial consultation with treatment focused on insomnia. She thought that 3-4 sessions may be what I need. Since it will be coming out of pocket, that sounds reasonable. I also have an email in to an acupuncturist to see if he thinks he could help. Alternative medicine here I come.
Massage, naprapathic doc and acupuncture all sound good. Let's hope they can deliver!
One of the things the masseuse asked me was, "What does the finished you look like-when you will be happy with how you look and feel? What will you be doing? What does this future look like?" I liked the question. Made me think. The first image that popped into my head was me, with shoulder length, wavy hair, new boobs, thinner, in a fabulous place with my family on vacation, laughing and having fun. That is what I saw. That is what I am making my goal for next summer. Goals are good.
Monday, October 28, 2013
Yep, Monday
Looks like I forgot to blog yesterday, oh well. I can't place any additional stress on myself. If I forget, I forget. Sunday was a low key day, more stuff around the house, good brunch with the kids (we are a breakfast loving family instead of dinner really) and errands. Still running around, but less fun and more productivity.
Last night I thought I would try the diphenhydramine for sleep. That is the active ingredient in Benadryl that makes you tired. I was told before that works and tried it again. Not so much. Little sleeps, one bad dream but that was more stress induced than anything. In the dream I was at work and my principal, who happened to be Lenny Kravitz, with a full afro, asked me if I saw my files. I said no. Then a parent (who happened to be a guy I saw at Bat Fest, but don't know) asked for a conference and I said "no, I have to go see my file." He was mad of course and we exchanged words. Then I went to find Lenny and he was in this big glass and mirrored room with thermal images of my head projected everywhere. He had to tell me that I now had brain cancer. Lovely dream. What is wrong with me? Sleep deprivation is now messing with the little sleep I get. The dream was bad, but Lenny was still hot....
Today was work. drive. radiate...home...normal busy Monday stuff after. I am super duper exhausted. I am struggling with what to do tonight. I want to just go to sleep on my own and see what happens. It could work out great (optimism) or suck so bad I am a total zombie tomorrow (good thing were near Halloween). I may down some cherry juice and melatonin-not sure.
This evening a friend stopped by to chat. She is a friend through a neighbor, but have always enjoyed her company at parties and get togethers. We talked a bit at a party Saturday night and she followed through tonight with a great offer. She is working on her yoga certification and is going to come to my house to work on restorative yoga, breathing and meditation with me. She can use me to help her learn and I can use her to help me heal. She also gave me her acupuncturist's number and I am going to give that a whirl too. I am hoping for some stress and pain relief. I did schedule a massage for tomorrow night-my neck is beyond tight and a lot is built up in there. I have to start somewhere.
Hopefully I can get into a routine of relieving stress for my mind and body. Get this, I tried calling to get an appointment with a therapist through my carrier and they have several, however you cannot get in to see anyone until late December or January. I think I have found the glitch in my insurance-limited doctors. I have dealt with this stress for the past 7 months, I guess I have to continue on my own. I don't want to pay out of pocket therapy prices. Yikes. Maybe the yoga and other stuff will help me too. I hope. I find myself getting down and sad when I am so tired-so the sleep is the number one thing I need to work on. Everything else I am doing is out of my hands.
Going to take a hot shower before bed to loosen up my muscles to relax and promote sleep. Hoping for the best.
Last night I thought I would try the diphenhydramine for sleep. That is the active ingredient in Benadryl that makes you tired. I was told before that works and tried it again. Not so much. Little sleeps, one bad dream but that was more stress induced than anything. In the dream I was at work and my principal, who happened to be Lenny Kravitz, with a full afro, asked me if I saw my files. I said no. Then a parent (who happened to be a guy I saw at Bat Fest, but don't know) asked for a conference and I said "no, I have to go see my file." He was mad of course and we exchanged words. Then I went to find Lenny and he was in this big glass and mirrored room with thermal images of my head projected everywhere. He had to tell me that I now had brain cancer. Lovely dream. What is wrong with me? Sleep deprivation is now messing with the little sleep I get. The dream was bad, but Lenny was still hot....
Today was work. drive. radiate...home...normal busy Monday stuff after. I am super duper exhausted. I am struggling with what to do tonight. I want to just go to sleep on my own and see what happens. It could work out great (optimism) or suck so bad I am a total zombie tomorrow (good thing were near Halloween). I may down some cherry juice and melatonin-not sure.
This evening a friend stopped by to chat. She is a friend through a neighbor, but have always enjoyed her company at parties and get togethers. We talked a bit at a party Saturday night and she followed through tonight with a great offer. She is working on her yoga certification and is going to come to my house to work on restorative yoga, breathing and meditation with me. She can use me to help her learn and I can use her to help me heal. She also gave me her acupuncturist's number and I am going to give that a whirl too. I am hoping for some stress and pain relief. I did schedule a massage for tomorrow night-my neck is beyond tight and a lot is built up in there. I have to start somewhere.
Hopefully I can get into a routine of relieving stress for my mind and body. Get this, I tried calling to get an appointment with a therapist through my carrier and they have several, however you cannot get in to see anyone until late December or January. I think I have found the glitch in my insurance-limited doctors. I have dealt with this stress for the past 7 months, I guess I have to continue on my own. I don't want to pay out of pocket therapy prices. Yikes. Maybe the yoga and other stuff will help me too. I hope. I find myself getting down and sad when I am so tired-so the sleep is the number one thing I need to work on. Everything else I am doing is out of my hands.
Going to take a hot shower before bed to loosen up my muscles to relax and promote sleep. Hoping for the best.
Sunday, October 27, 2013
Too Much Halloween!
Today was one of the busiest non medical days that I have had in a long time. We worked on our bedroom, trying to make it a better sleep environment for me all morning, then I took the kids to BatFest in downtown Batavia, then the Boo Bash at my school, then a party for adults this evening. Good thing I am so well rested for days like these...
On the fun note, Mars won a costume contest at BatFest, her luchadora costume turned out really cute. :)
Finding something to wear as a costume was a challenge for me. Not only do my normal clothes not fit me due to weight gain and body changes, I am all sharpied up to my neck from radiation. I can't wear anything that scoops even a smidgen or isn't practically a turtle neck. Just when I thought things for my self esteem couldn't get much worse, it did.
I just returned from the party and I have to say that it is not easy taking a step back and not being in the midst of all the fun. Don't get me wrong, I enjoyed myself, but not like I would have if I wasn't the me I am now. It is a hard change of life...especially for a social person like myself. I don't know the right adaptation here, I feel like if I don't act like old me, I look like something is wrong. Well, there is...and I am dealing with it. I want to have fun with my friends like I used to, and it deeply saddens me that I can't and everyone else's life just goes on and all is fine. Sucks I guess. Not their fault, and I am glad that they are enjoying themselves, that is what people need to do more. I need to enjoy more also, I just forgot how I guess, I have become a little reserved. I am super self conscious, always uncomfortable and feel like I don't want to draw attention to myself. Too many changes. Still so much to digest, especially now that we have the party and holiday season approaching. I have fantastic friends, so that is a huge bonus....Thank Goodness for them!
On the fun note, Mars won a costume contest at BatFest, her luchadora costume turned out really cute. :)
Finding something to wear as a costume was a challenge for me. Not only do my normal clothes not fit me due to weight gain and body changes, I am all sharpied up to my neck from radiation. I can't wear anything that scoops even a smidgen or isn't practically a turtle neck. Just when I thought things for my self esteem couldn't get much worse, it did.
I just returned from the party and I have to say that it is not easy taking a step back and not being in the midst of all the fun. Don't get me wrong, I enjoyed myself, but not like I would have if I wasn't the me I am now. It is a hard change of life...especially for a social person like myself. I don't know the right adaptation here, I feel like if I don't act like old me, I look like something is wrong. Well, there is...and I am dealing with it. I want to have fun with my friends like I used to, and it deeply saddens me that I can't and everyone else's life just goes on and all is fine. Sucks I guess. Not their fault, and I am glad that they are enjoying themselves, that is what people need to do more. I need to enjoy more also, I just forgot how I guess, I have become a little reserved. I am super self conscious, always uncomfortable and feel like I don't want to draw attention to myself. Too many changes. Still so much to digest, especially now that we have the party and holiday season approaching. I have fantastic friends, so that is a huge bonus....Thank Goodness for them!
Friday, October 25, 2013
Friday 3 Down
Not a lot to report today. Last night I tried hard to sleep on half a pill and it was restless and bad. Hard day with fatigue. Zapping went quickly today, thank goodness. Nothing this evening-couldn't really do anything while this tired anyway.
Shrink called me because I finally emailed him. He apologized about the bad reaction to the sleep drug he prescribed. He said to never take it again. He still thinks I should try the other one but haven't heard back from Osco and it's been a week. Needed to go through insurance and they didn't have it... Not sure I want to try it anyway.
Also heard back from nurses at oncology about herbal supplements and the drugs I take for therapy. Nothing wth estrogen in it-like soy. I need to ask if I should avoid all soy in general. Luna bars have soy, edamame is soybean...don't want to counteract any therapies. I can cut out soy for the most part I believe. Another suggestion which I have on the list was acupuncture. Looking into it. Also I'd like to look into napropathic medicine. I went once to a napropath for tennis elbow, had one treatment and I never had a problem again. It's not a common practice- very old world.
Going to try to get some sleep, with help, or else tomorrow will be a waste. Tomorrow is Halloween fun in town, at my school, and a party for us that night . Send vibes for sleep... Open to catch them!
Thursday, October 24, 2013
Faster....
Must faster today. Thank goodness. I was in and out of there in my allotted time, which is 30 minutes. Seems like they have me dialed in and set now. Once a week they will take x-rays to make sure I am still in order with the calculations. I just lay there. That is my job. I could leave my shoes on if I want, seems weird, but maybe I will. Depends if I am wearing cute socks or not. :) All those x-rays and radiation can't be good, but what am I to do? Leave it up to the experts.
The time is good, but I have to leave right after school, and I have to find a new place to park. The buses and parents are all lined up, and if I get stuck, it will throw my whole commute the center off. I am working on that tomorrow. I even have a parking advocate, rather a sweet gesture I must say.
I dozed off while watching something with Brad last night, I never do that. I don't think I was sleeping, but I wasn't watching nor paying attention, or even hearing. I almost stayed on the couch. I thought I could do the sleep thing on my own if I was that wiped, so I tried....until 12:30 a.m., then I caved. Tonight I am going to take a half dose, and only take half until I am ready to give it up and try it on my own. Problem is, if I go too long without sleep and accumulate a huge sleep debt, I will never be able to catch up (without help) and will be a wreck. Yoga, massage and herbal teas are next weeks plan. Ativan and herbs don't mix, says so on the bottle. Not sure why...I love the label, alcohol may intensify the effects...really? More sleep? Okay. Nah. I don't do that. I stay smart. It is boring, but I take no chances.
TGIF-tomorrow. I wish it was a normal Friday to go out with friends after work, haven't done that in 100 years. Instead I will go see my new friends-the zappers. Then, not sure. No plans for Friday night, that is okay. I will probably work on Marley's costume. Saturday is a big Halloween day, and we love Halloween around here.
Night.
The time is good, but I have to leave right after school, and I have to find a new place to park. The buses and parents are all lined up, and if I get stuck, it will throw my whole commute the center off. I am working on that tomorrow. I even have a parking advocate, rather a sweet gesture I must say.
I dozed off while watching something with Brad last night, I never do that. I don't think I was sleeping, but I wasn't watching nor paying attention, or even hearing. I almost stayed on the couch. I thought I could do the sleep thing on my own if I was that wiped, so I tried....until 12:30 a.m., then I caved. Tonight I am going to take a half dose, and only take half until I am ready to give it up and try it on my own. Problem is, if I go too long without sleep and accumulate a huge sleep debt, I will never be able to catch up (without help) and will be a wreck. Yoga, massage and herbal teas are next weeks plan. Ativan and herbs don't mix, says so on the bottle. Not sure why...I love the label, alcohol may intensify the effects...really? More sleep? Okay. Nah. I don't do that. I stay smart. It is boring, but I take no chances.
TGIF-tomorrow. I wish it was a normal Friday to go out with friends after work, haven't done that in 100 years. Instead I will go see my new friends-the zappers. Then, not sure. No plans for Friday night, that is okay. I will probably work on Marley's costume. Saturday is a big Halloween day, and we love Halloween around here.
Night.
Wednesday, October 23, 2013
Z is for Zapped
The book Marley chose to read to me tonight was just that, Z is for Zapped...more like, D was Zapped...quite appropriate for today. This afternoon was my first official radiation treatment. It was another rather long appointment. They do all these technical adjustments to get everything just perfect. I am glad for that, don't get me wrong. I am not glad for the way my neck feels while I lay there so long. It starts to hurt so bad, that when I can move it, it is all stiff and hurts even more. Nobody can lay that long on a table without getting uncomfortable. The actual zapping itself, I swear, is seconds to a few minutes. The majority of time is adjusting and shifting me or the laser sights. I just zone out. I am so good at being still. I have had some practice and now I will be an expert. I am going to use this time to meditate and try to get the junk out of my head so sleeping can improve.
The nurses are great, and one ran over the skin care and the side effects, which are somewhat minimal compared to all the other treatments and sleep aids I have tried. I need to get myself some pure Aloe Vera gel tomorrow and start applying that on my skin now. She said I won't get burns for a couple of weeks. She said the fatigue isn't like chemo fatigue, I may get more tired (is that possible) after a treatment. Other side effects may be from exposure to my lungs, hopefully I won't have to deal with that, very small chance. It is more of an inconvenient routine than anything else, except it is for my own good. I asked the doctor, who will be seeing me while mine is on maternity leave, if she will just be my doctor for the duration. She said of course. I don't want to have this doctor for 4 weeks and then the other comes back and tries to act like she cares. This one is nicer anyway. They have me slated for 3:45 radiation everyday. That should work.
We are going to work on our bedroom this weekend and try to make it a better sleep environment for me. The laundry baskets and stuff are not conducive to my sleep. We are even thinking of painting the red wall a more soothing color. I am reading some sleep books and it looks like I am a chronic insomniac. No duh. We can start with sleep environment, that is something we can control.
I will be on a continued quest for rest and my weaning of Ativan...If I can do all this other crazy stuff, I should be able to get control over my sleep. This brain and body needs to be refreshed and ready to conquer each new day, because they aren't easy!
The nurses are great, and one ran over the skin care and the side effects, which are somewhat minimal compared to all the other treatments and sleep aids I have tried. I need to get myself some pure Aloe Vera gel tomorrow and start applying that on my skin now. She said I won't get burns for a couple of weeks. She said the fatigue isn't like chemo fatigue, I may get more tired (is that possible) after a treatment. Other side effects may be from exposure to my lungs, hopefully I won't have to deal with that, very small chance. It is more of an inconvenient routine than anything else, except it is for my own good. I asked the doctor, who will be seeing me while mine is on maternity leave, if she will just be my doctor for the duration. She said of course. I don't want to have this doctor for 4 weeks and then the other comes back and tries to act like she cares. This one is nicer anyway. They have me slated for 3:45 radiation everyday. That should work.
We are going to work on our bedroom this weekend and try to make it a better sleep environment for me. The laundry baskets and stuff are not conducive to my sleep. We are even thinking of painting the red wall a more soothing color. I am reading some sleep books and it looks like I am a chronic insomniac. No duh. We can start with sleep environment, that is something we can control.
I will be on a continued quest for rest and my weaning of Ativan...If I can do all this other crazy stuff, I should be able to get control over my sleep. This brain and body needs to be refreshed and ready to conquer each new day, because they aren't easy!
Tuesday, October 22, 2013
That Was Fun, said Nobody Ever...
I hadn't heard from the radiologist and I was starting to get nervous, annoyed and frustrated. The sooner I start this treatment, the sooner it ends. On the way home from work I called them to find out what was up. I had to leave a message with the nurse, but she called me right back. She said that they left a message on my cell phone on Friday for me to come in today! I said that I never received the call, which I didn't (double checked phone history too). Anyway, they asked if I could come in right now. Since I was headed home, and south...I said I could be there in 20 min. Yippie!
Today was the technical day. They had my "form" ready for me on the machine and I had to lay perfectly still with my hands over my head holding on a handle, and my head turned all the way to the right for over an hour. It was fine for the first 30 min. I may not be able to sleep, but I can totally lay still, like an opossum. But after the 30, my neck was so stiff it was painful. My hands started falling asleep and all I could do is stay still. There were two technician nurses and the doctor. Not the pregnant doctor, she had a baby yesterday, the other one. They took a zillion xrays, readjusted me, lined the laser on me and marked me up like a road map. I have a what looks like the outline of Indiana on my chest in marker. They talked decimals and tangents...good, real life application of math. Wish I could share that with my students, but I think I won't. They were moving the machine fractions to get it adjusted just right. When I was finally able to move, it hurt! My arms, my chest from stretching and my neck was just toast. I will be the stillest person in the world while zapping is going on because I don't want to shift and have them start radiating my heart or have to make another hour long adjustment appointment. That doesn't sound good.
I officially start the radiation tomorrow. Haven't looked at the calendar yet to see where that puts me, but I think it is the first week of December. I also get the do's and don'ts of radiation. Can't wait to hear about those. They are another set of really nice nurses, and they are working with me to give me after school hours. They aren't open in the evening, but they are going to try to keep me around 3:45-that works and I will then only need to leave work on every third Friday for Herceptin. Getting this worked out was very important to me, so I could continue to work and juggle everything else.
I got home about 5:30, and started dinner because Brad was getting Bosco his booster shots. Dinner made, and then I had to run errands with Marley. I also had to pick up things for school. I am beat. It is 8:00 and I wish I could turn in and go to sleep. I have to stay up until 10 to keep a routine. Argh.
So here I am, ready to start this next treatment, almost exactly 7 months after my surgery. I can't tell if this has been the longest 7 months of my life or if time has flown by. I am just not sure. Some of my sore aches and pains are going away. I still have the weird muscley like crampy thing in my leg, but not sure why. I am overall in less pain. I am walking more too, maybe I just need to keep moving. I think I am going to try a restorative yoga class tomorrow night here in town. I will play that by ear after radiation day one is done. Everyday I feel different, I wonder, truly wonder if I will ever have a day where I don't hurt, don't have to have a treatment and am a full person again...5 years? 10? Fingers crossed.
That's all I've got....
Today was the technical day. They had my "form" ready for me on the machine and I had to lay perfectly still with my hands over my head holding on a handle, and my head turned all the way to the right for over an hour. It was fine for the first 30 min. I may not be able to sleep, but I can totally lay still, like an opossum. But after the 30, my neck was so stiff it was painful. My hands started falling asleep and all I could do is stay still. There were two technician nurses and the doctor. Not the pregnant doctor, she had a baby yesterday, the other one. They took a zillion xrays, readjusted me, lined the laser on me and marked me up like a road map. I have a what looks like the outline of Indiana on my chest in marker. They talked decimals and tangents...good, real life application of math. Wish I could share that with my students, but I think I won't. They were moving the machine fractions to get it adjusted just right. When I was finally able to move, it hurt! My arms, my chest from stretching and my neck was just toast. I will be the stillest person in the world while zapping is going on because I don't want to shift and have them start radiating my heart or have to make another hour long adjustment appointment. That doesn't sound good.
I officially start the radiation tomorrow. Haven't looked at the calendar yet to see where that puts me, but I think it is the first week of December. I also get the do's and don'ts of radiation. Can't wait to hear about those. They are another set of really nice nurses, and they are working with me to give me after school hours. They aren't open in the evening, but they are going to try to keep me around 3:45-that works and I will then only need to leave work on every third Friday for Herceptin. Getting this worked out was very important to me, so I could continue to work and juggle everything else.
I got home about 5:30, and started dinner because Brad was getting Bosco his booster shots. Dinner made, and then I had to run errands with Marley. I also had to pick up things for school. I am beat. It is 8:00 and I wish I could turn in and go to sleep. I have to stay up until 10 to keep a routine. Argh.
So here I am, ready to start this next treatment, almost exactly 7 months after my surgery. I can't tell if this has been the longest 7 months of my life or if time has flown by. I am just not sure. Some of my sore aches and pains are going away. I still have the weird muscley like crampy thing in my leg, but not sure why. I am overall in less pain. I am walking more too, maybe I just need to keep moving. I think I am going to try a restorative yoga class tomorrow night here in town. I will play that by ear after radiation day one is done. Everyday I feel different, I wonder, truly wonder if I will ever have a day where I don't hurt, don't have to have a treatment and am a full person again...5 years? 10? Fingers crossed.
That's all I've got....
Monday, October 21, 2013
Another New Doc.
Another day at the office...doctor's office that is. After work I had to go and establish a new gynecologist because mine retired. I needed to go because when I start tomoxifin I need to be monitored due the risks of that drug-ovarian cancer-in the future. Joys. My new doctor was a wonderful lady and a good listener. Of course I cried. I always cry at doctors now, it's like Pavlov's dogs....
I'm annoyed that radiology hasn't called. They told me I would start Tuesday or Wednesday, haven't heard from them. What's taking so long? The sooner we start, the sooner it's done. She's pregnant I understand, but let's get this party started.
Tonight we walked Dane down to the theater for his play practice and then the three of us went to the library. I checked out two books about sleep, one is Sleep Disorders for Dummies. Perfect for me. I've inquired about some alternative medicine, and Brad looked up some things for me also. I'm going to kick this thing naturally. My goal is to wean off Ativan by the end of the weekend. I've failed before, but the quickest way to learn is by failing. I will try and try again.
I logged in about 10,000 steps today. That's my daily goal. I am physically and mentally tired so those are good factors for sleep.
Tomorrow is a new day... Try and try again. Disclaimer for the bad spelling. I'm blogging from my phone. Sorry.
Sunday, October 20, 2013
Sunday
I didn't get as good of rest as I thought I would. I ended up taking an additional half Ativan at 3:30. Not going to make this a habit. Tomorrow I will email and get hunting for a homeopath, or chiro or something. Although tired, I did a lot today. A lot of purging around the house, some shopping-even picked up a few gifts for Christmas. Always multitasking! We got Marley a new memory foam mattress and had to get sheets and all that. Had a nice dinner and now I am pooped. There is nothing I didn't do today that I wanted. That's good :).
Body still a train wreck, but nothing I can do about it. Not sure why. Hopefully I'll feel good soon.
Anticipating a busy week. Doc appointment tomorrow and then I start radiation Tuesday or Wednesday. That's the start of the next 33 weekdays for me.
Just doing what I need to do.
Saturday, October 19, 2013
What a Nightmare
So I take the new med the doctor gave me and dedicated a good 8 hours to it working. I took it and waited. About 30 minutes later I felt it kick in and gave my body a nice relaxed feeling. My fingers were crossed. Here's how it went down. In and out of fitful sleeps waking with vivid weird dreams and the sweats. Each time I woke I had to shake off images of my dismembered dog, giant sea turtles crossing the street and people in a pool fully dressed. My final wake was to neighborhood noise abouy 3 a.m. At that point I wandered the house looking out the windows for the cause of the sound that now pulled me out of the nightmare. I was wide awake. I was desperate for some rest and I did not want to go back to that surreal land and start over that late -so I opted for an Ativan. Got a little rest but woke up exhausted and scared.
I'm not taking that drug again-and I don't think I'm going to try the other. These things don't work for me and I don't like what they do or how they leave me. I'm done trying to get new stuff. I'm going to email my oncologist and ask if I'm clear for all forms of homeopathy. I'll try melatonin, I'll do acupuncture, I'll consider a chiropractor. I can't let my mind get all scrambly. Too scary. Last night pushed me to a new level. If I tried that again, I'd have to double down the dose and then all I'd do is be worried what will happen. Those dreams were layered. What if I got up and did something bad. Not worth it.
Pushed through today. Went for a walk with Karen and dogs, went to Batavia craft show, and out to dinner with Hardins. Dane stayed home and Marley went on a Girl Scout Halloween night. So nice to not pay a babysitter now with Dane being older.
Planning on getting some sleep, Ativan only. No big plans tomorrow-but a long walk is a must. I am trying very hard to get through all this stuff, somedays are harder than others. I wish I could be stronger, but I'm not. I can only do my best.
Friday, October 18, 2013
Always Something.
So I had my Herceptin today, and it burned! I think because my port isn't being used weekly, it hurt more. It was a quiet day at the center, I was the only one there, and all of my favorite nurses were working. It was nice seeing them. I had emailed that I was on a schedule and also informed them that I have a lot of aches and pains. They thought they would try giving me the Herceptin without the preservative that they use for partial bottles. They didn't really know if that would do anything, but it wouldn't hurt in any way. I know it won't make a difference, my pain isn't from that. I chatted a bit with them as I got my infusion, and then booked out of there to go meet the next doctor.
Psych-what an awkward place to go. At least it was for me. I was in the waiting room with what I saw, a few very depressed looking older women. I felt like I was in the wrong place. I stayed. I met my doctor, young looking for sure. He looks about 16, but is not of course. We went through a battery of questions and the whole time there was an awkward vibe. We were both very snarky about the question answer bit. We got caught up on semantics a few times and compromised. It was a weird appointment. Interesting, none to say the least. Not therapeutic at all, in fact when it was time for him to get down to business, he was excited to recommend his favorite drugs. Bottom line is that we need to fix my sleep, however, drugs isn't the long term answer. He prescribed two drugs, both sedatives. One is supposed to knock me on my ass and put me out for 8 hours. Let's see about that. The other is supposed to be good also, but Osco didn't have it and it was 80 bucks if I didn't wait until Monday to see if insurance will cover it. Had no choice to wait. I am not sure of these medications, especially because he said I could take them all. Hello, can you say coma? I don't want to be on something to sleep for the long term. I need to get rest to then think clear headed to fall asleep on my own again. I guess I suffer from all three levels of insomnia. The can't fall asleep, the middle of the night waker, and the early waker. He said this is effecting the quality of my life. Okay, yeah I am more tired, but I think the freakin' bc has caused more ill effects than the sleep. Oh yeah, they don't do therapy, only dispense narcotics. I am supposed to see him in 4 weeks and let him know how I am doing. I can go see a different person for therapy if I want. Geez, just like a man...here is a problem, now I am going to fix it and see ya... argh!!
Went out to dinner and took kids to American Science and Surplus, which we have coined ASS for short. He he. They were having an science night and we always like going there to look at all the crazy stuff. We watched them electrify a pickle, microwave a cd, use microscopes and other fun stuff.
Here is where I am still concerned. The nurses didn't seem concerned about my pains. I think because I suck it up so much, and tolerate a lot of pain, that it takes a long time for me to crack or be understood. Anyway the pain is getting worse. It is from my hips down. Still feels like I have blown an ovary, burns. My hips hurt, my legs hurt and I feel like I just over did it on some fantastical exercise regime. I haven't done jack shit to feel this way. I took one nice long walk on Saturday, and today is Friday, no way is it from that. Yes, I probably worry too much about everything, but when your biggest worries come true, it is hard to ignore them. I see the next doctor on Monday, she will check me out for blown innards. She has to monitor me for future uterine cancer from the Tamoxofin that I start in three weeks. Yes I am afraid she is going to say, "Let's to an ultrasound" or something and now I have to do more crap. Just make it go away. Blah.
I am going to go to bed, dedicate a lovely 8 hours to this new miracle drug and try to feel refreshed and new in the morning. Hoping that my lower body will stop rebelling and get back to normal. I was supposed to start feeling great, not be in stupid pain. I want to try to push through it and maybe it is just my lazy body from the last 7 months telling me that I need to get going, that if I sit around much longer I will get all stiff and old. That or something else is wrong. Fingers crossed again. Can't take anymore stuff, I am only one person. I am ready to get back to normal....
Psych-what an awkward place to go. At least it was for me. I was in the waiting room with what I saw, a few very depressed looking older women. I felt like I was in the wrong place. I stayed. I met my doctor, young looking for sure. He looks about 16, but is not of course. We went through a battery of questions and the whole time there was an awkward vibe. We were both very snarky about the question answer bit. We got caught up on semantics a few times and compromised. It was a weird appointment. Interesting, none to say the least. Not therapeutic at all, in fact when it was time for him to get down to business, he was excited to recommend his favorite drugs. Bottom line is that we need to fix my sleep, however, drugs isn't the long term answer. He prescribed two drugs, both sedatives. One is supposed to knock me on my ass and put me out for 8 hours. Let's see about that. The other is supposed to be good also, but Osco didn't have it and it was 80 bucks if I didn't wait until Monday to see if insurance will cover it. Had no choice to wait. I am not sure of these medications, especially because he said I could take them all. Hello, can you say coma? I don't want to be on something to sleep for the long term. I need to get rest to then think clear headed to fall asleep on my own again. I guess I suffer from all three levels of insomnia. The can't fall asleep, the middle of the night waker, and the early waker. He said this is effecting the quality of my life. Okay, yeah I am more tired, but I think the freakin' bc has caused more ill effects than the sleep. Oh yeah, they don't do therapy, only dispense narcotics. I am supposed to see him in 4 weeks and let him know how I am doing. I can go see a different person for therapy if I want. Geez, just like a man...here is a problem, now I am going to fix it and see ya... argh!!
Went out to dinner and took kids to American Science and Surplus, which we have coined ASS for short. He he. They were having an science night and we always like going there to look at all the crazy stuff. We watched them electrify a pickle, microwave a cd, use microscopes and other fun stuff.
Here is where I am still concerned. The nurses didn't seem concerned about my pains. I think because I suck it up so much, and tolerate a lot of pain, that it takes a long time for me to crack or be understood. Anyway the pain is getting worse. It is from my hips down. Still feels like I have blown an ovary, burns. My hips hurt, my legs hurt and I feel like I just over did it on some fantastical exercise regime. I haven't done jack shit to feel this way. I took one nice long walk on Saturday, and today is Friday, no way is it from that. Yes, I probably worry too much about everything, but when your biggest worries come true, it is hard to ignore them. I see the next doctor on Monday, she will check me out for blown innards. She has to monitor me for future uterine cancer from the Tamoxofin that I start in three weeks. Yes I am afraid she is going to say, "Let's to an ultrasound" or something and now I have to do more crap. Just make it go away. Blah.
I am going to go to bed, dedicate a lovely 8 hours to this new miracle drug and try to feel refreshed and new in the morning. Hoping that my lower body will stop rebelling and get back to normal. I was supposed to start feeling great, not be in stupid pain. I want to try to push through it and maybe it is just my lazy body from the last 7 months telling me that I need to get going, that if I sit around much longer I will get all stiff and old. That or something else is wrong. Fingers crossed again. Can't take anymore stuff, I am only one person. I am ready to get back to normal....
Thursday, October 17, 2013
Aches and Pain-No Good for the Brain
Well the weekend is almost here, not that I have any plans that I'm looking forward to...but it's still a weekend. However, since it's been dark and dreary every morning this week and I had to get up, I wouldn't mind a dreary morning to sleep in.... My luck it will be sunny at 6:45 and ruiny sleep in plan. Plus I'm looking forward to what the shrink may suggest for a sleep aid. I'd like to sleep on my own, but too scared to even try.
Tomorrow I get herceptin and see the shrink. I have so many aches that I'll probably ask to see the doctor at infusion time. I feel more like I've raked my body from something like snowboarding or overdoing it hiking or something. All aches scare me. It's not a good feeling. I'm trying not to burden anyone with all this but Brad gets to hear it when it gets too much. I guess I feel a bit bad for him. I always apologize for ruining things. I hate that I did. Wasn't on purpose.
Not motivated to purge today. Dane has a late play practice and I just feel achy. Having tea and doing nothing-and I'm okay with it.
Fall is here! Sweatshirts! Warm hats! (although I'm not as excited as normal to wear a hat-go figure), colored leaves! Those are all good things.
Wednesday, October 16, 2013
Hump Day
It's Wednesday already, that's good. Weekends are nice, and we don't have a lot planned so even better. The weather isn't good for my spirit so on dreary days I've decided to get motivated and purge things. Yesterday was the bathroom cabinets and today the dresser. Feels good. Need to get a sense of being in control of something. Went to dinner with a friend, never do I go out on a weekday, but she works all weekends so I did. It was nice to break up the monotony of my daily grind. Good convo. Maybe I don't want to be a wallflower, maybe what I need is to go out and regenerated my love of being social. Who knows. Still full of aches and I will tell the nurses on Friday when I get herceptin. Then I'll tell the Doogie Hauser psychiatrist I meet for sleep help...maybe he'll just give me happy and sleepy pills and all will be good in the world. My luck he'll give me melatonin and call it a day....
I'm calling it a day now... Night!
Tuesday, October 15, 2013
Daily Grind
Back to the daily grind. I called radiation after school because they haven't scheduled me for the ISO check, dry run, for Thursday. They called me back and said that it was going to most likely be Tuesday or Wednesday, the doctor isn't done. Don't know what kind of sign that is. I am sore from pulling my bow, I have a sore lower abdomen from slipping on a hangar Friday afternoon right before we left. Thought I was busting an ovary or something all weekend. And I still have a weird muscle spasm or something in my leg. I was freaking out it was a clot, but the medicine that causes clots...I am not even on! Whatever. I am so damn sick of feeling achy. I really am.
I know this sounds like a lot of bitching and whining about how I feel, but I have felt shitty for 7 months and guess what, it takes a toll. I am thinking of going back to being a wallflower, kind of have anyway. I need to purge more, and get my act together. I guess I have to be super mom and super me, no matter how I feel. It is what is expected. Maybe it's today's weather, maybe it is coming off a long weekend, maybe it is my family who can't ever pick up after themselves without being told 8 times, maybe I am tired. Maybe I just want a day to feel good. Wouldn't that be nice. No aches, no pains, no worries. I want it sooner than later! I deserve it dammit! At least I think so! This temporary is too long!
I know this sounds like a lot of bitching and whining about how I feel, but I have felt shitty for 7 months and guess what, it takes a toll. I am thinking of going back to being a wallflower, kind of have anyway. I need to purge more, and get my act together. I guess I have to be super mom and super me, no matter how I feel. It is what is expected. Maybe it's today's weather, maybe it is coming off a long weekend, maybe it is my family who can't ever pick up after themselves without being told 8 times, maybe I am tired. Maybe I just want a day to feel good. Wouldn't that be nice. No aches, no pains, no worries. I want it sooner than later! I deserve it dammit! At least I think so! This temporary is too long!
Monday, October 14, 2013
Fall Weekend
That weekend went fast! I swear we had an extra day but somehow it flew by and it is now 9:35 p.m. on a Monday... Wow.
We left Friday for a long weekend at the cabin. Columbus Day weekend has always offered up beautiful weather and an extra day. We did what we wanted and nothing all that productive. We went to a Harvest Festival and had campfires. Brad and I had an archery contest, which I lost, but not by a ton. Plus, this was the first time I had shot since February. We had to lighten my pull, but I shot, which made me happy. I deserve some extra points for that! I went for long, quiet walk alone, played Farkle, painted rocks, drew, planted walnut trees (throwing walnuts), read, and basically relaxed. The kids spent most of their time in a tree in the forest. I wasn't for how high they were, but who am I to ruin their fun? I had a walkie talkie in case there was an injury...thank goodness there wasn't. On the way home we continued our tradition of stopping at a corn maze, which we did in 36 minutes! Not bad, considering they don't have the flags taller than the corn anymore so the look out was not helpful. We visited the animals, bought some cookies and then went to one of our fave pizza places for dinner. Traditions are good. Family time is even better. Oh, and we listened to 2 hours of Startalk on podcast. We all learned so much about salt. Yep, astrophysics and salt. Interesting.
We got home at 6:15, and Dane had to be at his first play meeting/read through at 7:00 p.m.-with a parent. So... I jumped in the shower, got dressed, Dane did the same and off we went. Two hours later we are home. Long day, but still everything is going so quickly. He doesn't have a ton of lines, but thinks the play is good and is excited to be in it. You have to start somewhere! I am very proud of him.
Another week starts, but it will start on Tuesday, that is a bonus too! For me, this week brings a Friday of medical doings. I have Herceptin then the psych for my sleep issue, which has improved somewhat since I have been off the chemo. I still take the Ativan, but my head isn't nearly as "awake" as it was when I had the steroid with the chemo. Thank goodness...there is hope for me and my sleep.
On another note, I was texting with Debby, she finished the marathon and she reached her pledge goal! Thanks to everyone who helped her with that! It means a lot to us, and really is for all women.
Here is to a good week, a good night's sleep, a good cup of coffee and everything else needed that's good! :)
Yeah Me! Doing something I love!
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Kids just watching, totally laid back!
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Corn Maze Tradition!
We left Friday for a long weekend at the cabin. Columbus Day weekend has always offered up beautiful weather and an extra day. We did what we wanted and nothing all that productive. We went to a Harvest Festival and had campfires. Brad and I had an archery contest, which I lost, but not by a ton. Plus, this was the first time I had shot since February. We had to lighten my pull, but I shot, which made me happy. I deserve some extra points for that! I went for long, quiet walk alone, played Farkle, painted rocks, drew, planted walnut trees (throwing walnuts), read, and basically relaxed. The kids spent most of their time in a tree in the forest. I wasn't for how high they were, but who am I to ruin their fun? I had a walkie talkie in case there was an injury...thank goodness there wasn't. On the way home we continued our tradition of stopping at a corn maze, which we did in 36 minutes! Not bad, considering they don't have the flags taller than the corn anymore so the look out was not helpful. We visited the animals, bought some cookies and then went to one of our fave pizza places for dinner. Traditions are good. Family time is even better. Oh, and we listened to 2 hours of Startalk on podcast. We all learned so much about salt. Yep, astrophysics and salt. Interesting.
We got home at 6:15, and Dane had to be at his first play meeting/read through at 7:00 p.m.-with a parent. So... I jumped in the shower, got dressed, Dane did the same and off we went. Two hours later we are home. Long day, but still everything is going so quickly. He doesn't have a ton of lines, but thinks the play is good and is excited to be in it. You have to start somewhere! I am very proud of him.
Another week starts, but it will start on Tuesday, that is a bonus too! For me, this week brings a Friday of medical doings. I have Herceptin then the psych for my sleep issue, which has improved somewhat since I have been off the chemo. I still take the Ativan, but my head isn't nearly as "awake" as it was when I had the steroid with the chemo. Thank goodness...there is hope for me and my sleep.
On another note, I was texting with Debby, she finished the marathon and she reached her pledge goal! Thanks to everyone who helped her with that! It means a lot to us, and really is for all women.
Here is to a good week, a good night's sleep, a good cup of coffee and everything else needed that's good! :)
Yeah Me! Doing something I love!.JPG)
Kids just watching, totally laid back!.JPG)
Corn Maze Tradition!Friday, October 11, 2013
Weekend Off
I am taking the weekend off to spend quality time with my family and prepare mentally for my next round of treatments. Good luck to Debby in the Chicago Marathon! And Thank you to all of you who helped her reach her goal! Enjoy the beautiful fall weather!
Thursday, October 10, 2013
Planning Session
Let's back up to yesterday....I had my "planning" session at radiology. After I told them I was there, I went across the garden and knocked on the window to say hi to one of the nurses from chemo. They are such great women over there, I do miss their support, but if I don't have to go back there as often, or for chemo ever again, I am fine with that. I will see them next week for Herceptin anyway. I am sure they miss me.
The nurse from radiology came and gave me a tour. She handed me a card with a barcode in which I check myself in each day. Then I go change into a gown and a robe, this is my new routine. Then I hang out until it is my turn. Only one person can go at a time, so you are really hanging out alone. She showed me the GIANT machine that will be zapping me, holy guacamole...that thing was impressive. Thank goodness for the push in math and science folks, this is high tech stuff. Then we went to the CT scan room where we did all the prep work. Okay, this room was like 55 degrees and I was frozen. I had to lay on this blue beanbag thing and she had to get my spine straight. I had to hold a handle over my head. She scanned. Adjusted. Scanned. Adjusted. Then she called the radiologist in to mark me up. She labeled my parts, the nurse Sharpied me and the other nurse whom the called something crazy like the dosentrix (sounded kinky to me) helped. I asked what she was and she said she helped determine the radiation dosage. Okay, whatever. Then they gridded me out and put a bunch of wires on me and put me back in the scan again. In and out, adjust and mark. Then they deflated the blue beanbag mat and it made a form around me. This is the form I will have to lay in each time. Cool idea. It helps you stay in the exact position. Can you imagine radiation 25 years ago? No way. You probably just stood there while they aimed. Yikes. This is super technical. All math and science. It takes the radiologist about a week to get my stuff all dialed in and mapped out. I will have a dry run I believe on the 17th with a start date of the 21st. That is what the nurse thought. 33 is my magic number which brings me to the first week of December. They are trying to give me the latest times. Looks like for now she is going to give me the 3:45 p.m. That works out well with me not having to leave school early. I am a going to be a juggling beast! I should join the circus....
Meanwhile I was noticing that the light coverings that they had of clouds was upside down and it totally bugged me. I told them that it was incorrect and really looked bad. Of course they said I was the only person to have noticed it, and then they all looked up and agreed. My job was done. See I have a purpose.
After I got all marked up I was free to go change and leave. This is going to be my new daily routine. Not the in and out of the scanner, but going there, getting to know these nurses and getting zapped.
It is all scary. I don't like the new things. I will be okay, hopefully, once it starts. I am not looking forward to always going there directly after work. It takes me 35 minutes to get there. I have been speeding to get there in 30, and I don't want to do that anymore. Randall Road is a nightmare at all times of the day-have to cut over to Rt.31 as soon as I can. I think this schedule should get me home by 5, which doesn't sound bad, but it will have been a long day by then. Plus, then the mom job kicks in. What can I do? Take it with a smile and know all of this is for my benefit. Nobody is making me go, they are not torturing me for fun ( I hope). This is for me to see my grandkids. I can do it. I will just keep swimming, just keep swimming....
The nurse from radiology came and gave me a tour. She handed me a card with a barcode in which I check myself in each day. Then I go change into a gown and a robe, this is my new routine. Then I hang out until it is my turn. Only one person can go at a time, so you are really hanging out alone. She showed me the GIANT machine that will be zapping me, holy guacamole...that thing was impressive. Thank goodness for the push in math and science folks, this is high tech stuff. Then we went to the CT scan room where we did all the prep work. Okay, this room was like 55 degrees and I was frozen. I had to lay on this blue beanbag thing and she had to get my spine straight. I had to hold a handle over my head. She scanned. Adjusted. Scanned. Adjusted. Then she called the radiologist in to mark me up. She labeled my parts, the nurse Sharpied me and the other nurse whom the called something crazy like the dosentrix (sounded kinky to me) helped. I asked what she was and she said she helped determine the radiation dosage. Okay, whatever. Then they gridded me out and put a bunch of wires on me and put me back in the scan again. In and out, adjust and mark. Then they deflated the blue beanbag mat and it made a form around me. This is the form I will have to lay in each time. Cool idea. It helps you stay in the exact position. Can you imagine radiation 25 years ago? No way. You probably just stood there while they aimed. Yikes. This is super technical. All math and science. It takes the radiologist about a week to get my stuff all dialed in and mapped out. I will have a dry run I believe on the 17th with a start date of the 21st. That is what the nurse thought. 33 is my magic number which brings me to the first week of December. They are trying to give me the latest times. Looks like for now she is going to give me the 3:45 p.m. That works out well with me not having to leave school early. I am a going to be a juggling beast! I should join the circus....
Meanwhile I was noticing that the light coverings that they had of clouds was upside down and it totally bugged me. I told them that it was incorrect and really looked bad. Of course they said I was the only person to have noticed it, and then they all looked up and agreed. My job was done. See I have a purpose.
After I got all marked up I was free to go change and leave. This is going to be my new daily routine. Not the in and out of the scanner, but going there, getting to know these nurses and getting zapped.
It is all scary. I don't like the new things. I will be okay, hopefully, once it starts. I am not looking forward to always going there directly after work. It takes me 35 minutes to get there. I have been speeding to get there in 30, and I don't want to do that anymore. Randall Road is a nightmare at all times of the day-have to cut over to Rt.31 as soon as I can. I think this schedule should get me home by 5, which doesn't sound bad, but it will have been a long day by then. Plus, then the mom job kicks in. What can I do? Take it with a smile and know all of this is for my benefit. Nobody is making me go, they are not torturing me for fun ( I hope). This is for me to see my grandkids. I can do it. I will just keep swimming, just keep swimming....
oops
I forgot to blog last night because I was actually falling asleep on the couch reading a book about the Tao and the loosely translated anecdotes of a man who has studied the Tao for 30 years and is also a neuropsychologist. Although I was finding it interesting... I think it helped me find "The Way" to sleepyland.... ha! I have been enlightened.
I will be back after school to catch up about the 'planning' session at radiology. Serious stuff, big machines. Have a great day....were out of cream so that means I must head to Starbucks...darn.
I will be back after school to catch up about the 'planning' session at radiology. Serious stuff, big machines. Have a great day....were out of cream so that means I must head to Starbucks...darn.
Tuesday, October 8, 2013
Busy Again
I still cannot figure out why everything happens on two days a month, there are so many days that things can get spread out, but no.... Today was another hectic Marvin family logistics day. Started out with getting Mars ready for a field trip to Sholes School, and I had to braid her hair and help her get all pioneer. Then I had a before school meeting-on top of this Brad wanted me to take Bosco to the vet on my way to work. I had to say no. I told him to take him, I couldn't do all that while he was still in bed, hell no. So he did. Then he had to pick up Dane early from school to go to the orthodontist, which was also near the vet, so they picked up Bosco on the way home. Meanwhile after school I met Marley at a nature center for Girl Scouts until 5:30. Mars and I picked up dinner and brought it home...off went the shoes-sore feet today. Busy first two days of the week.
This evening brought us some exciting news-Dane was cast in the play he and Marley auditioned for on Sunday. As far as we know, Marley was not cast. She is a little sad, but she will bounce back quickly. We know it is a pretty big time commitment, but baseball is over and I will be in radiation for most of the same time, so we are kind of around. The play is the first two weekends in December. I am proud of him and it should be a great experience. He was cast as Santa's doctor, Dr. Green. Kind of funny for a kid who hates all things medical.
I am feeling kind of beat tonight. Took a muscle relaxer to get some of the cricks out. I may be nervous about the "planning" meeting tomorrow at the radiologist. Another fun afternoon. This is a crazy week! Hoping for it to slow down, but I don't see that at all in the near future of this week. Argh!
Okay folks, this is close to a final call to help Debby reach her goal!!! She is 210$ short of her pledge! Just the amount of a cup of coffee-that's all she is asking! Anything! It all adds up! Look down, if you own boobs, donate one dollar per boob to help her run for the Susan G. Komen charity! We need to keep our sisters! I miss mine!
http://www.info-komen.org/site/TR/MarathonfortheCure/HeadquartersSite?px=14083314&pg=personal&fr_id=2935 Try that link! I just did, it goes right to Debby's personal page.
Thank you in advance! Hugs!
This evening brought us some exciting news-Dane was cast in the play he and Marley auditioned for on Sunday. As far as we know, Marley was not cast. She is a little sad, but she will bounce back quickly. We know it is a pretty big time commitment, but baseball is over and I will be in radiation for most of the same time, so we are kind of around. The play is the first two weekends in December. I am proud of him and it should be a great experience. He was cast as Santa's doctor, Dr. Green. Kind of funny for a kid who hates all things medical.
I am feeling kind of beat tonight. Took a muscle relaxer to get some of the cricks out. I may be nervous about the "planning" meeting tomorrow at the radiologist. Another fun afternoon. This is a crazy week! Hoping for it to slow down, but I don't see that at all in the near future of this week. Argh!
Okay folks, this is close to a final call to help Debby reach her goal!!! She is 210$ short of her pledge! Just the amount of a cup of coffee-that's all she is asking! Anything! It all adds up! Look down, if you own boobs, donate one dollar per boob to help her run for the Susan G. Komen charity! We need to keep our sisters! I miss mine!
http://www.info-komen.org/site/TR/MarathonfortheCure/HeadquartersSite?px=14083314&pg=personal&fr_id=2935 Try that link! I just did, it goes right to Debby's personal page.
Thank you in advance! Hugs!
Monday, October 7, 2013
Enough for One Day....
I am quite glad I took a break from the heavy stuff, because it all came flooding back today. I had my MUGA scan today-it went fine. I really hate IV's and all that, but the results came back in the normal range. I looked it up and I am close to not being in the normal range, so I emailed my doctor to ask what that means. Especially because I read that Herceptin can cause heart damage. Great, another thing to file away in the "Could Happen" drawer. After that test, I went to meet the radiologist with Brad. She is kind of stony, very business-no warmth at all. Too bad. Glad she is a radiologist and I don't have to see her often, in fact she is going to leave at the end of he month for a maternity leave, so I won't see much of her at all. I will get her colleague. Anyway, lots of information, disappointment and overload.
On the good side she said the tough stuff is over, radiation should be a lot easier. She also said she should be able to get me in after school for the most part so I don't have to take time off to do the 33 treatments. She also said the risks of radiation outweigh the possible side effects, short and long term. That's about it on the good side. 33 treatments.
The disappointing side is that she said that I won't be able to get the surgery in January. She said she recommends 3-4 months after treatment to do reconstruction. However, she also pretty much said she has never had a patient like me who is having delayed reconstruction. All of her patients come with the expanders-I told her my story. She said she has read about better results for delayed reconstruction due to the tissue healing better and less chance of wound infection. That's good I guess. Do I have a choice in any of this if I want to live? Not really. So my glimmer of hope for a start of a new body is gone. Now I have no idea of when anything will happen. WTF.
She also said that some side effects could be: fatigue (great!), burns (most likely), shortness of breath, fractured ribs (ouch), down the road target area cancer (joy), and chronic lymphedema. I don't want lymphedema. She said if I get it, I will have it for the rest of my life. She said though, because I haven't had it, that helps my chances of not getting it. So much information and things to think about and process. Just makes my head ache. I have this terrible image of what I am going to turn into. I don't want to be a fat, boobless, woman with a giant swollen arm for the rest of my life just waiting for the next cancer to come that one of my treatments caused. I don't want that at all. I can't let that happen. I am not going to get lymphedema, just not!!! This is all so scary and tiring. This is physically and mentally taxing. I am not being negative, I am being a realist. I think I am going to be okay, and I want to be okay, but I need doctors to stop telling me all this crap! I don't want to go to doctors all the time. Oh, and get this. The lady who was doing my MUGA scan started flapping her jaw about how her mom had bc and went through radiation and then got soft tissue cancer from it. Really? Really? That is what you tell your patients? I told her to not tell me anything else. Really?!?!??! Can't people just shut up? No sensitivity what so ever. She made me cry.
Next step-Wednesday. I go back to radiation for a "planning" session. This is when they make my mold (I keep thinking like Han Solo in that freezy thing) and start planning my radiation. This appointment is another fun filled hour. Then we decide on a start date. She said we can start about anytime after a week of planning, it takes her a few days to get it all dialed in. She was thinking the 20th. I am not sure I care, except that the 18th I already have two after school doctor appointments and am not sure how to be in 3 places. I can always take part of the day off of school, but I am trying to avoid that if possible. I need to start thinking that I need to just take care of all this now, get it done and things should be less and less at the doctor after radiation. After the new year, it looks like every three weeks for the Herceptin and who knows when for surgery. Not January. Maybe March or April? Round it to a full year. Awesome. Maybe they can do the change out in July, and take my port out at the same time. No, that is too long. But who knows.
So that is that. Enough for one day. Turn me over, I'm done.
On the good side she said the tough stuff is over, radiation should be a lot easier. She also said she should be able to get me in after school for the most part so I don't have to take time off to do the 33 treatments. She also said the risks of radiation outweigh the possible side effects, short and long term. That's about it on the good side. 33 treatments.
The disappointing side is that she said that I won't be able to get the surgery in January. She said she recommends 3-4 months after treatment to do reconstruction. However, she also pretty much said she has never had a patient like me who is having delayed reconstruction. All of her patients come with the expanders-I told her my story. She said she has read about better results for delayed reconstruction due to the tissue healing better and less chance of wound infection. That's good I guess. Do I have a choice in any of this if I want to live? Not really. So my glimmer of hope for a start of a new body is gone. Now I have no idea of when anything will happen. WTF.
She also said that some side effects could be: fatigue (great!), burns (most likely), shortness of breath, fractured ribs (ouch), down the road target area cancer (joy), and chronic lymphedema. I don't want lymphedema. She said if I get it, I will have it for the rest of my life. She said though, because I haven't had it, that helps my chances of not getting it. So much information and things to think about and process. Just makes my head ache. I have this terrible image of what I am going to turn into. I don't want to be a fat, boobless, woman with a giant swollen arm for the rest of my life just waiting for the next cancer to come that one of my treatments caused. I don't want that at all. I can't let that happen. I am not going to get lymphedema, just not!!! This is all so scary and tiring. This is physically and mentally taxing. I am not being negative, I am being a realist. I think I am going to be okay, and I want to be okay, but I need doctors to stop telling me all this crap! I don't want to go to doctors all the time. Oh, and get this. The lady who was doing my MUGA scan started flapping her jaw about how her mom had bc and went through radiation and then got soft tissue cancer from it. Really? Really? That is what you tell your patients? I told her to not tell me anything else. Really?!?!??! Can't people just shut up? No sensitivity what so ever. She made me cry.
Next step-Wednesday. I go back to radiation for a "planning" session. This is when they make my mold (I keep thinking like Han Solo in that freezy thing) and start planning my radiation. This appointment is another fun filled hour. Then we decide on a start date. She said we can start about anytime after a week of planning, it takes her a few days to get it all dialed in. She was thinking the 20th. I am not sure I care, except that the 18th I already have two after school doctor appointments and am not sure how to be in 3 places. I can always take part of the day off of school, but I am trying to avoid that if possible. I need to start thinking that I need to just take care of all this now, get it done and things should be less and less at the doctor after radiation. After the new year, it looks like every three weeks for the Herceptin and who knows when for surgery. Not January. Maybe March or April? Round it to a full year. Awesome. Maybe they can do the change out in July, and take my port out at the same time. No, that is too long. But who knows.
So that is that. Enough for one day. Turn me over, I'm done.
Sunday, October 6, 2013
Sunday
I have decided to return to my blogging for a number of reasons, but mainly right now because it is dreary and I am bored. It's not like it was another wasted day, we got up and went to the flea market and walked around. I bought one creepy doll, one creepy doll head and a nice sweater from someone who had a boutique shop/sample sale items. Nothing major. It was cool, sunny and crisp. Just the perfect temp to walk around looking at treasures, crap and handmade goods. After that we ran home, fed the kids and took them to auditions for a local theater play. This was the first experience of auditions so Brad and I stayed the whole time which was 2.5 hours long. There were about 40 kids and not nearly that many parts. There were definitely kids who have been there before and know the ropes. I am proud of my kids for just trying out. If they make it great, if they don't, totally fine with that also. They said it was going to be 3-4 times a week until the play in December. Yikes. Plus, it isn't after school, it is after dinner! I am going to have some tired kids if this happens. Good experience either way.
As for me I am doing alright. I am sore again because I am off chemo. The healing process is going on again and I am tight and uncomfortable. I really don't enjoy always feeling crappy. Tomorrow I have the Mugga (or Muggle scan as Karen calls it) and then I meet with the radiologist. This should give me a plan for radiation, and a schedule I hope. I have a feeling there will be a lot of juggling going on in the next few months. I do feel like I am getting more energy back, feeling a little more like myself. I cannot overly exert myself, but more like the multitasking, want to do things old self. Maybe this will help wear me out, being just me can be tiring. I am still bummed about the sushi incident, what a waste of food and money! I have no desire to try again anytime soon. The last time I had sushi was the day I found out I had BC. Think I am that crazy that I could manifest a distaste for sushi because of that? I don't think so, because I was looking forward to it. Maybe just didn't settle right. Oh well. I would be sad if I was turned off by other foods too...however, maybe it would do my waistline good.
Anyway, that is all that is going on really. Trying to get by mentally and physically. Trying to stay sane, be mom, be wife, be teacher, be friend, take care of a house and be me. I take it treatment by treatment. I don't like the day by day thing, that seems super bleak. I need larger chunks, bigger hurdles to conquer and then say, I did that. It is over.
Hoping for the best for everything and everyone. I have to be my blood type. BPositive.
Forgot to hit publish when I wrote this around 4 p.m.- was so bored I baked muffins and cupcakes. I also made homemade tortilla chips, because we had avocados that needed turning into guacamole. Nothing like standing in front of the stove deep frying tortillas. Not sure what I was thinking. It was a busy and full day. Yes, I am tired...but see the change in energy level? I wouldn't have made it through a day like this last weekend....
As for me I am doing alright. I am sore again because I am off chemo. The healing process is going on again and I am tight and uncomfortable. I really don't enjoy always feeling crappy. Tomorrow I have the Mugga (or Muggle scan as Karen calls it) and then I meet with the radiologist. This should give me a plan for radiation, and a schedule I hope. I have a feeling there will be a lot of juggling going on in the next few months. I do feel like I am getting more energy back, feeling a little more like myself. I cannot overly exert myself, but more like the multitasking, want to do things old self. Maybe this will help wear me out, being just me can be tiring. I am still bummed about the sushi incident, what a waste of food and money! I have no desire to try again anytime soon. The last time I had sushi was the day I found out I had BC. Think I am that crazy that I could manifest a distaste for sushi because of that? I don't think so, because I was looking forward to it. Maybe just didn't settle right. Oh well. I would be sad if I was turned off by other foods too...however, maybe it would do my waistline good.
Anyway, that is all that is going on really. Trying to get by mentally and physically. Trying to stay sane, be mom, be wife, be teacher, be friend, take care of a house and be me. I take it treatment by treatment. I don't like the day by day thing, that seems super bleak. I need larger chunks, bigger hurdles to conquer and then say, I did that. It is over.
Hoping for the best for everything and everyone. I have to be my blood type. BPositive.
Forgot to hit publish when I wrote this around 4 p.m.- was so bored I baked muffins and cupcakes. I also made homemade tortilla chips, because we had avocados that needed turning into guacamole. Nothing like standing in front of the stove deep frying tortillas. Not sure what I was thinking. It was a busy and full day. Yes, I am tired...but see the change in energy level? I wouldn't have made it through a day like this last weekend....
Saturday, October 5, 2013
Saturday
Average day of cleaning and what not. Brad and I went on a date for sushi at swordfish and unfortunately I could barely eat it! I ordered my favorite foods and I couldn't get it down. Almost gagged. I was sad. Brad had a lot of fish to eat. It's been the only food aversion this whole time! I wonder why. We didn't want to go home so we dropped off the leftovers and went for a drink, then gelato. Kept it all in Batavia. Not much else to get into right now. I will blog better soon. Just need one more day.
Friday, October 4, 2013
Friday
Well this was the first Friday in a very long time without treatment. For some reason I thought it would be eventful. It wasn't. Pizza and Cake Boss with Brad and Marley. I talked with a good friend and she helped me realize that the blog is for more than me. Maybe I'll get my groove back soon.
Thursday, October 3, 2013
Thursday10/3
I still am blocked from writing. Kinda have a pissed off emotion towards the blog, like I have created a monster of all my drama. I don't want drama, I just want a normal life. I'll take some more time. All of this is so weird. A love hate relationship. There's a lot mulling around in my head and maybe we all need a little less drama and repeated words of my tiredness... It's boring and pathetic. I don't want to be either if those. Damn. Just wrote more about not writing than I wanted to. Ill figure it out.
Wednesday, October 2, 2013
Wednesday
I'm kinda taking a break from the dishing of the dirt on myself for a few days. This is my one week off drugs and doctors maybe that has something to do with it. Just don't have the motivation to write much. Hope everyone else is well. Thanks to those who donated to Debby. It's not too late. She was at 85% last time I checked. Race is next Sunday.
Tuesday, October 1, 2013
Not Sure
Not sure about blog, not sure about how I feel. I didn't let last night ruin my day. It is what it is and I have to trudge on.
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