It is just a little back step here. The patches are too much. Dr. M gave me the lowest dose the patches come in, but I have been vomiting, sweating, sleeping fitfully, and generally I could not feel sicker if I had the flu. Yuck. It is pretty miserable.
I called my dear nurse, Ms Geraldine and left her a message about what has been going on. She called back this afternoon and Dr. M said to take the patch off and give it 3 days and then she wants us to try again. I am to call Ms G and let her know how I am doing. I will call her before I start again and let her know when I would be trying again and we will see what we can do. It is possible that this might work if I take more meds. These would be anti-nausea pills.
This is not the beginning. No, that happened when I first started this journey. Meds for the little c, meds for the meds for the little c, and then meds for the meds for the meds for the little c. It is very easy sitting her and ignoring the reality of things and just say, "The patches aren't working, it is time to wake up and deal with the reality of where I am." But back to reality, there is a lot at play here. So many things have to be considered. How many drugs do I give up at one time? I feel as if I am carrying around a back pack with cancer, meds, renovations, beloved ones. Do I lighten the load? Is that possible? Or do I put the back pack down and walk away. That might be a very short walk. It would be a walk filled with pain. It would be a walk where I am even more of a burden to myself and those around me. Once you decide to live and gather love and people and animals and plants and things all around you, it is a little harder to just stop. And I don't know how long it would take if I just stop.
I was so looking forward to Easter. Okay, my idea of the holiday. The part that celebrates spring and flowers and life returning and bunnies, baby ducks and peeps and eggs. I love dying eggs and have pretty much run the gambit of dying from brewing my own home made dyes, to marbleized, speckled, painted, and Ukrainian dyed eggs called, Pysanky. This year I was looking forward to just plain egg dying kits you pick up at Wally world. I had bought a box after Easter last year. But my Honey who is trying so hard to deal with all of this, the house and the fear of what is going on with me. He brought me home one of the most wonderful presents, a box of egg dying. He had no way of knowing that I already had a box. He also bought me chocolate bottom peeps. Three yellow peeps with just their bottoms dipped. He just makes me stop in awe of the little things he does that breaks my heart open and I love him all the more.
I had a dozen and half eggs boiled ready to go. Some were white from the store and some were our own colored eggs from our own dear sweet girls. I was going to make a salad, a vegetable, I thought some fresh asparagus, and a dessert. I wanted to make a strawberry cheese cake now that I know it is my Honey's favorite dessert. I have such beautiful strawberries. But Saturday I had to call Mom and tell her I was too sick to dye eggs. Later that evening Mom called back and told me she had everything for dinner. All we had to do was show up, and if I was sick, Bug could come and get our dinner. How sweet is that. I wanted an Easter so bad, with them. I wanted to have Easter Dinner with my family, and Mom gave me that. I was not feeling well at all, but I put a chair in the middle of the kitchen and I made zen cookies. Those are my cookies that have all in one. Everything goes in to them: oatmeal, flax seed, wheat bran, pecans, dried cranberries, dark, milk, semi-sweet and white chocolate, peanut butter chips, sunflower and pumpkin seeds, coconut, brown sugar, white and whole wheat flour and I am sure that I am missing some things. I did not feel better for baking cookies, but I am sure that I did not feel any worse for it either. I packed some cookies in a cute little porcelain Easter bowl I had gotten for Mom. I packed extra cookies, and some a little darker because Dad swears he prefers those and then choose one of my ribbon sachets and off we headed to their home.
Mom basically did all the work. She fried chicken, cooked potatoes for mashing, cooked lovely fresh corn on the cob, set the table and made a lemon meringue pie. Dad gave Bug a chocolate bunny and book on sun rooms for ideas for our Florida room. Dad gave me a rubber ducky like you play in the tub with but it is made out of white chocolate dyed perfectly so that I think you could swap it out for a real rubber duck and no one would know. I think I would rather eat it. He also gave me two books on poems, writings, paintings and thoughts and myths about flowers. These are two of the sweetest people in the world. The apple did not fall far from either of these trees. So even though I had a case of guilt strangling me when I got there, by the time we sat down to dinner and finally convinced Mom to sit down, I was so happy. Mom and Dad have both said time and time again that they miss not having family where they live to go home to "grandmas and grandpas house" for holidays. They may only be here for a few months, but we had Easter at their house, and Mom couldn't have been happier. That took all the guilt away and I was able to enjoy the four of us having dinner together. It wasn't at all how I had pictured it, but it was sweet and our little family huddled together for a meal and then the world grabbed us all back up and we were off and running, or in my case, off and sleeping.
When I was a child we would go camping for Easter. Instead of an Easter Dress or suit for the boys, we would get new clothes like sneakers and shorts and t-shirts. If it was still cool, it might be a new pair of jeans. But we would put on our Easter clothes and go out to the chapel the Dads would have set up for us in the woods and we would have our sunrise service out there in the middle of the Ocala National Forest. Meanwhile at home the Moms would be hiding the eggs and getting Easter Dinner out and ready to go. The Dads would lead us back to the campground and the rest of the day would be spent in the woods, searching for eggs. The Moms had to take over the egg hiding because the Dads hid them so well and so high we would only find part of the eggs each year. After the Moms took over we had a much higher finding rate. I remember sun streaking through the tops of pine trees. I remember watching all of these families come together to run wild in the woods and laugh and play and take time to pray and sit together a tribe of different families that came together several times of the year on holidays.
I remember Easters at home also where Dad would hide the eggs we dyed and sure enough we wouldn't fine a couple of them until around Christmas. I remember my first Easter here and I had bought this giant Godiva chocolate bunny and Harry ate it. I knew it was him because he still had a piece of the torn box showing the chocolate bunny ears stuck in his teeth. Ah, happy memories.
I remember my first egg hunt with Maggie, Harry and Lily. I dyed a couple dozen eggs and the first dozen were gone by the time I realized that Lily had eaten them. Maggie and Harry kept bringing them to us, but Lily never came back and by the time we found her she was already bloating and releasing a poisonous gas with the familiar odor of sulfur. We barley lived through those endless weeks until everything finally passed. After that we had peep hunts for them. But Maggie really didn't care for the marshmallow treats and Lily would bring those back to us and then spit out a sticky slimy version of its once sugary self. Harry just walked around the yard like a vacuum cleaner. Peeps flew off of benches, out of bushes and pots as he inhaled deeply with that giant yaw of his open. Great memories.
There was no hunting for the dogs this year, I wasn't up to it. The eggs remain undyed in the frig. The boxes of dye getting ready to put away. We did buy chocolate bunnies when we were at the BX, and chocolate lady bugs. Ooh, I had forgotten about them until just now. I had my Easter dinner with family and I baked my cookies. Good memories. Shiny new still bright as dyed eggs memory.
There is so many things I need to get up and do, but I have not been able to because of the nausea. Now we will rotate back to the pain. The pain has been a little better. Not gone, but maybe a little better. Hard to say because sometimes my body can not tell the difference between pain and being sick. Both make me useless and nauseous. Life is a challenge. I need to buck up and get back to being alive, or not. But I guess I have to keep trying.
My honey went to Lowe's with Dad last night after dinner yesterday. They bought the color paint for the house. The precious beloved ones, Marty and Shelia gave us a gift card to Lowe's as a house warming present. It bought all the colors we needed. A deep forest green that matches the roof for the door and shutters. A new leaf green for the bedroom focus wall, yellow focus wall upstairs in the office and pale blue for a focus wall in the living room. The rest of the house inside will be white. That gives us a blank canvas to work with all of our art. Bug has been working so hard on cleaning and working on the house. I haven't been well enough to even go and see. He power washed the front of the house and I am not even well enough to sit in front of the sewing machine and make curtains with the material I have on hand.
Time to step back and punt. Stop the meds for a while. See if I can get my feet back under me and back to living. I am down to below 115 pounds. I have barely eaten in days, and now like removing the patch would fix everything instantly, I am still not able to eat much.
Challenges.
I called my dear nurse, Ms Geraldine and left her a message about what has been going on. She called back this afternoon and Dr. M said to take the patch off and give it 3 days and then she wants us to try again. I am to call Ms G and let her know how I am doing. I will call her before I start again and let her know when I would be trying again and we will see what we can do. It is possible that this might work if I take more meds. These would be anti-nausea pills.
This is not the beginning. No, that happened when I first started this journey. Meds for the little c, meds for the meds for the little c, and then meds for the meds for the meds for the little c. It is very easy sitting her and ignoring the reality of things and just say, "The patches aren't working, it is time to wake up and deal with the reality of where I am." But back to reality, there is a lot at play here. So many things have to be considered. How many drugs do I give up at one time? I feel as if I am carrying around a back pack with cancer, meds, renovations, beloved ones. Do I lighten the load? Is that possible? Or do I put the back pack down and walk away. That might be a very short walk. It would be a walk filled with pain. It would be a walk where I am even more of a burden to myself and those around me. Once you decide to live and gather love and people and animals and plants and things all around you, it is a little harder to just stop. And I don't know how long it would take if I just stop.
I was so looking forward to Easter. Okay, my idea of the holiday. The part that celebrates spring and flowers and life returning and bunnies, baby ducks and peeps and eggs. I love dying eggs and have pretty much run the gambit of dying from brewing my own home made dyes, to marbleized, speckled, painted, and Ukrainian dyed eggs called, Pysanky. This year I was looking forward to just plain egg dying kits you pick up at Wally world. I had bought a box after Easter last year. But my Honey who is trying so hard to deal with all of this, the house and the fear of what is going on with me. He brought me home one of the most wonderful presents, a box of egg dying. He had no way of knowing that I already had a box. He also bought me chocolate bottom peeps. Three yellow peeps with just their bottoms dipped. He just makes me stop in awe of the little things he does that breaks my heart open and I love him all the more.
I had a dozen and half eggs boiled ready to go. Some were white from the store and some were our own colored eggs from our own dear sweet girls. I was going to make a salad, a vegetable, I thought some fresh asparagus, and a dessert. I wanted to make a strawberry cheese cake now that I know it is my Honey's favorite dessert. I have such beautiful strawberries. But Saturday I had to call Mom and tell her I was too sick to dye eggs. Later that evening Mom called back and told me she had everything for dinner. All we had to do was show up, and if I was sick, Bug could come and get our dinner. How sweet is that. I wanted an Easter so bad, with them. I wanted to have Easter Dinner with my family, and Mom gave me that. I was not feeling well at all, but I put a chair in the middle of the kitchen and I made zen cookies. Those are my cookies that have all in one. Everything goes in to them: oatmeal, flax seed, wheat bran, pecans, dried cranberries, dark, milk, semi-sweet and white chocolate, peanut butter chips, sunflower and pumpkin seeds, coconut, brown sugar, white and whole wheat flour and I am sure that I am missing some things. I did not feel better for baking cookies, but I am sure that I did not feel any worse for it either. I packed some cookies in a cute little porcelain Easter bowl I had gotten for Mom. I packed extra cookies, and some a little darker because Dad swears he prefers those and then choose one of my ribbon sachets and off we headed to their home.
Mom basically did all the work. She fried chicken, cooked potatoes for mashing, cooked lovely fresh corn on the cob, set the table and made a lemon meringue pie. Dad gave Bug a chocolate bunny and book on sun rooms for ideas for our Florida room. Dad gave me a rubber ducky like you play in the tub with but it is made out of white chocolate dyed perfectly so that I think you could swap it out for a real rubber duck and no one would know. I think I would rather eat it. He also gave me two books on poems, writings, paintings and thoughts and myths about flowers. These are two of the sweetest people in the world. The apple did not fall far from either of these trees. So even though I had a case of guilt strangling me when I got there, by the time we sat down to dinner and finally convinced Mom to sit down, I was so happy. Mom and Dad have both said time and time again that they miss not having family where they live to go home to "grandmas and grandpas house" for holidays. They may only be here for a few months, but we had Easter at their house, and Mom couldn't have been happier. That took all the guilt away and I was able to enjoy the four of us having dinner together. It wasn't at all how I had pictured it, but it was sweet and our little family huddled together for a meal and then the world grabbed us all back up and we were off and running, or in my case, off and sleeping.
When I was a child we would go camping for Easter. Instead of an Easter Dress or suit for the boys, we would get new clothes like sneakers and shorts and t-shirts. If it was still cool, it might be a new pair of jeans. But we would put on our Easter clothes and go out to the chapel the Dads would have set up for us in the woods and we would have our sunrise service out there in the middle of the Ocala National Forest. Meanwhile at home the Moms would be hiding the eggs and getting Easter Dinner out and ready to go. The Dads would lead us back to the campground and the rest of the day would be spent in the woods, searching for eggs. The Moms had to take over the egg hiding because the Dads hid them so well and so high we would only find part of the eggs each year. After the Moms took over we had a much higher finding rate. I remember sun streaking through the tops of pine trees. I remember watching all of these families come together to run wild in the woods and laugh and play and take time to pray and sit together a tribe of different families that came together several times of the year on holidays.
I remember Easters at home also where Dad would hide the eggs we dyed and sure enough we wouldn't fine a couple of them until around Christmas. I remember my first Easter here and I had bought this giant Godiva chocolate bunny and Harry ate it. I knew it was him because he still had a piece of the torn box showing the chocolate bunny ears stuck in his teeth. Ah, happy memories.
I remember my first egg hunt with Maggie, Harry and Lily. I dyed a couple dozen eggs and the first dozen were gone by the time I realized that Lily had eaten them. Maggie and Harry kept bringing them to us, but Lily never came back and by the time we found her she was already bloating and releasing a poisonous gas with the familiar odor of sulfur. We barley lived through those endless weeks until everything finally passed. After that we had peep hunts for them. But Maggie really didn't care for the marshmallow treats and Lily would bring those back to us and then spit out a sticky slimy version of its once sugary self. Harry just walked around the yard like a vacuum cleaner. Peeps flew off of benches, out of bushes and pots as he inhaled deeply with that giant yaw of his open. Great memories.
There was no hunting for the dogs this year, I wasn't up to it. The eggs remain undyed in the frig. The boxes of dye getting ready to put away. We did buy chocolate bunnies when we were at the BX, and chocolate lady bugs. Ooh, I had forgotten about them until just now. I had my Easter dinner with family and I baked my cookies. Good memories. Shiny new still bright as dyed eggs memory.
There is so many things I need to get up and do, but I have not been able to because of the nausea. Now we will rotate back to the pain. The pain has been a little better. Not gone, but maybe a little better. Hard to say because sometimes my body can not tell the difference between pain and being sick. Both make me useless and nauseous. Life is a challenge. I need to buck up and get back to being alive, or not. But I guess I have to keep trying.
My honey went to Lowe's with Dad last night after dinner yesterday. They bought the color paint for the house. The precious beloved ones, Marty and Shelia gave us a gift card to Lowe's as a house warming present. It bought all the colors we needed. A deep forest green that matches the roof for the door and shutters. A new leaf green for the bedroom focus wall, yellow focus wall upstairs in the office and pale blue for a focus wall in the living room. The rest of the house inside will be white. That gives us a blank canvas to work with all of our art. Bug has been working so hard on cleaning and working on the house. I haven't been well enough to even go and see. He power washed the front of the house and I am not even well enough to sit in front of the sewing machine and make curtains with the material I have on hand.
Time to step back and punt. Stop the meds for a while. See if I can get my feet back under me and back to living. I am down to below 115 pounds. I have barely eaten in days, and now like removing the patch would fix everything instantly, I am still not able to eat much.
Challenges.
I'm sorry, Kathleen. I wish that the meds didn't make you so sick. My sponsor has decided against any further chemo because of the side effects. I have had to respect his wishes.
ReplyDeleteSyd, my offer still holds if he would like to talk to anyone, please let him know. I have never intended to think I have any right to tell someone what to do when it comes to something like this. I think he knows best what he must do. I wish I was at a place where I could make the same decision. Bless his heart, he has made a brave choice controlling what he puts in his body. All choices made at this point will have its challenges. I send my love to him, and you and your family
ReplyDeleteThank you, Kathleen. He is not wanting to talk the last few days. I have called several times but he isn't returning calls. I checked with his daughter and she said that he is okay. I know that all of this will need processing. I have given him your blog address. I find myself needing to detach a bit because it is easy for me to take on the fear of losing him.
DeleteYou poor darling, being sick and ill for whatever reason really lowers the spirit, so I can understand a little what you are feeling. Your darling is so strong for you, and your parents wonderful that you could share Easter with them.. precious memories of the days sharing love together.. I hope that your sickness soon goes away and that you will begin to feel like eating again and put a little flesh on your bones as they say... meanwhile over the pond, I am thinking of you, and hope that today is a little lighter and easier on you.. many hugs and good thoughts coming your way, best wishes, J
ReplyDelete