I was so excited! I actually ran some errands this weekend ( ok walked really slow, but whose counting...). Cary drove of course, but just getting out of the house was wonderful. I was a bit done in though afterward but hey, I will take what I can get.
I REALLY tried to make it to church Sunday, but my body just plain vetoed that one. I am going to try again next week.This time I am really going to take it easy on the weekend so I can have all that energy on the Sabbath.
I am getting better and better every day now and seriously, the thing that hurts the worst is the wound in my neck, so that is a HUGE improvement over chest tube and drain holes.
This site is to help anyone who might have esophageal cancer get another point of view ~ Also it is to help my family know what the crap is going on when I don't call for days at a time... loves and kisses from a sick chick. UPDATE: I am no longer a sick chick! Now I don't call for days at a time just cause I am out and about and raising my boys :)
Monday, July 19, 2010
Friday, July 16, 2010
Tuesday, July 13, 2010
still boring.... HOORAAYYY!!!! I have an appointment on Thursday and understand that at least one of my drains will be removed. Jo Marie (remember, she's the surgeon's nurse practitioner) said they might wait a week before they take the other one out. Woo hoo!! then there will be only the feeding tube.
Ok so maybe my drains aren't THIS big...
Friday, July 9, 2010
Last couple of days have been extremely boring, (thank you for all those wishes of boring-ness) with the exception of one little earthquake... It was only a 5.4 and the epicenter was a good 30 or 40 miles away, but it was enough to spark bedtime discussion with small boys. It was also pretty funny that little Ben could not WAIT until dad got home from work to tell him all about it and how " shaky shaky" it was. We are all fine and dandy, but it did make me think that as soon as I get feeling a bit better, I need to get my emergency preparedness kit up to speed. Right now with all the craziness, I have no idea even where our poor ravaged, picked through kits even are! (looks like I still need those boring days to continue into the long distant future...)
Wednesday, July 7, 2010
Here at the new house I kept smelling something really bad up in our bedroom. Well, I finally tracked it down... Remember what a wonderful Easter my boys had? well, as you may remember the move happened right after that and the Easter stuff got all packed up and shipped off to the new house. Except that some of the Easter baskets still had boiled eggs in them. Yum....
Tuesday, July 6, 2010
Ok I have a very dear and beautiful friend from Virginia who gave me the BEST idea.
Remember how I was lamenting about how yucky it is to not be able to wash my hair? OK if I didn't on the blog, I sure did in person... I can't get in the shower because of the drains and tubes still in me and I can't bend over the sink or tub because it is just too excruciating. The hospital has a shower cap thingy that does a "dry wash) but since I wasn't able to rinse, after about a day or so, my hair felt sticky and grungier (is that a word?) than before.
I have another sweet friend who came and picked me up once I got home from the hospital, took me over to her home where she has an in home hair salon, and washed my hair for me. It had been over two weeks and I started to bawl it felt so good. To top it off she also cut and styled it for me and I felt very loved and very spoiled. I will be forever grateful for that act of kindness.
I can't do that all the time though so my hair is once again taking on a smelly life of its own. Well, my sweet friend from Virginia has had many health issues ever since she was a young girl (she was sledding and crashed into a tree, paralyzing her from the waist down ). She has worked hard to overcome so much and I admire her no end, but unfortunately she has had to spend a lot of time in the hospital. She is amazing though and is even sweeter and more loving than she was before the accident ~ and that was pretty hard to do let me tell you!!! She has the most amazingly beautiful long hair, and her friends came up with a way to help her keep it clean.I saw a pic of it on her facebook page and thought it was magnificent!
She put her head over the side of the bed letting her friends support her neck. Then her friends placed a small clean plastic trash can directly under her head. They washed her hair using the trash can to catch the water and soap. I bet a towel under the can would make sure there were no big messes to clean as well.
I think it is brilliant and if you ever want to give a service to someone who has been hospital bound for so long, this is one any one can do, AND it will be appreciated so much more than you can even imagine.
Remember how I was lamenting about how yucky it is to not be able to wash my hair? OK if I didn't on the blog, I sure did in person... I can't get in the shower because of the drains and tubes still in me and I can't bend over the sink or tub because it is just too excruciating. The hospital has a shower cap thingy that does a "dry wash) but since I wasn't able to rinse, after about a day or so, my hair felt sticky and grungier (is that a word?) than before.
I have another sweet friend who came and picked me up once I got home from the hospital, took me over to her home where she has an in home hair salon, and washed my hair for me. It had been over two weeks and I started to bawl it felt so good. To top it off she also cut and styled it for me and I felt very loved and very spoiled. I will be forever grateful for that act of kindness.
I can't do that all the time though so my hair is once again taking on a smelly life of its own. Well, my sweet friend from Virginia has had many health issues ever since she was a young girl (she was sledding and crashed into a tree, paralyzing her from the waist down ). She has worked hard to overcome so much and I admire her no end, but unfortunately she has had to spend a lot of time in the hospital. She is amazing though and is even sweeter and more loving than she was before the accident ~ and that was pretty hard to do let me tell you!!! She has the most amazingly beautiful long hair, and her friends came up with a way to help her keep it clean.I saw a pic of it on her facebook page and thought it was magnificent!
She put her head over the side of the bed letting her friends support her neck. Then her friends placed a small clean plastic trash can directly under her head. They washed her hair using the trash can to catch the water and soap. I bet a towel under the can would make sure there were no big messes to clean as well.
I think it is brilliant and if you ever want to give a service to someone who has been hospital bound for so long, this is one any one can do, AND it will be appreciated so much more than you can even imagine.
Sunday, July 4, 2010
Haven't posted in a while, just out of pure laziness I guess.
Lets see to catch up...
*I got my feeding tube clogged again, but thank heaven Cary got it unstuck by brute force. I couldn't have done it, I am a big wuss! ...
* Got permission from the doctor to put that blasted Nexium (the culprit in the clogging capers) into applesauce and eating it instead of putting it in through the feeding tube. (all pills had been being crushed, mixed with water and shot it directly into my intestines (ewww... BTW).
*finished up all my antibiotics so all I am on now is the aforementioned evil Nexium, a med to help keep my heart rate down ( Lopressor) and my pain meds (which I am trying to go without for longer and longer periods of time. So far, haven't been too successful at that, but working on it).
* Aunt Maralee took the kids to Sea World and they LOVED IT. Thank you so much Aunt Maralee and all the cousins who made it so fun for them. Jonah couldn't quit telling me about the walrus with HUGE teeth ~ but it was ok because he was nice...And Ben was MOST impressed with the sword he got as a souvenir. He showed me all his "secret moves"...
*Oh and the final pathology report came back. All my margins (the area around where the tumor was removed) are completely clear. I am COMPLETELY cancer free ~ officially.
Lets see to catch up...
*I got my feeding tube clogged again, but thank heaven Cary got it unstuck by brute force. I couldn't have done it, I am a big wuss! ...
* Got permission from the doctor to put that blasted Nexium (the culprit in the clogging capers) into applesauce and eating it instead of putting it in through the feeding tube. (all pills had been being crushed, mixed with water and shot it directly into my intestines (ewww... BTW).
*finished up all my antibiotics so all I am on now is the aforementioned evil Nexium, a med to help keep my heart rate down ( Lopressor) and my pain meds (which I am trying to go without for longer and longer periods of time. So far, haven't been too successful at that, but working on it).
* Aunt Maralee took the kids to Sea World and they LOVED IT. Thank you so much Aunt Maralee and all the cousins who made it so fun for them. Jonah couldn't quit telling me about the walrus with HUGE teeth ~ but it was ok because he was nice...And Ben was MOST impressed with the sword he got as a souvenir. He showed me all his "secret moves"...
*Oh and the final pathology report came back. All my margins (the area around where the tumor was removed) are completely clear. I am COMPLETELY cancer free ~ officially.
Tuesday, June 29, 2010
Um , i think I messed up the dates on the follow up appointment. We got all the way into LA and discovered my appt wasn't until Thursday. Jo Marie was sweet though and helped me change my dressing and just checked up on me. We will head back on Thursday. Cary and I are both pretty tired, and the drive is a long one, but so worth it. I am so thankful to be in such capable hands I won't complain about the small stuff!
Sunday, June 27, 2010
wayyyyy too much excitement...
I just love to hate that old curse, " May you live in interesting times" , with the idea that famine, flood and pestilence are all very interesting. My idea of the perfect wish for someone would be, " May you live a boring life". Quick , somebody wish that for me!!!!
My wound vac (a really cool piece of technology that uses a vacuum to help big wounds heal faster) got a blockage at 2 am on Saturday morning and I spent the rest of the night trying to resolve that. I finally called the home health care nurse at about 5 am, and she said she would send someone out in the AM to change everything, just to turn it off for now. I had dealt with her before and I trusted her. I did what I was told, but the on call nurse for Saturday (I had not had dealings with her before) did not want to come out to help me. She kept insisting that she would just walk us through changing the canister~ when Cary and I both knew just by the process of elimination the canister was not the problem. Both Kim and Donna, the nurses that came out to my home were lovely, but we were both sort of frustrated by Gloria. Being an on call nurse means by definition, covering any problems that arise~ am I too far off base on that one?! grrrrr....
Anyway, long story short, we were fine just letting it be until Monday as I had a followup appointment with Dr. Soukiasian, and we knew he would handle this no problem.
Well, then about 10:00 am, I was mid dose giving myself medicine through my feeding tube, when it got unimaginably clogged. I was next to tears as I had tried to be so @###!!##T&** careful about flushing it, even going so far as to flush it whenever I took a sip of water. That way I knew I was WAY over the minimum amount of before and after each dose of meds, before and after each feeding and 4 x a day on top of that. This was a bit more serious, so I called the home health care nurse again, and she advised me to go to the local urgent care. We both were not comfortable with that, so we called the on call dr . for Dr Soukiasian, Dr Parker. She told us to come into the ER and in the meantime try to put Diet Coke (of all things) into the tube on the drive up. Apparently it sometimes helps to breakup blockages. Who knew?!
Well, as we were getting ready to leave, Cary called poor little Haley bug (she took this weekend to go on a river rafting trip),and bless her heart, she cut the trip short and immediately headed here to watch the boys for us. And she was so sweet and cheerful about it!!! ( people - never wonder why I love these kids so dang much!!!) Just as we hung up, our home teacher called us and asked what he could do for us (THANK YOU QUINTON for listening to that little voice!!!!!). He and his sweet family watched the boys until Haley could make it the nearly 4 hours back from Bakersfield.
Long story short, new feeding tube put in,wound vac taken off and wet to dry dressing applied and Cary is now trained how to do that new kind of dressing. I was so proud! He didn't faint or get queezy once!!! I have to admit, we've both kinda toughened up a bit since all this started... I could be wrong, but I really think we are tough enough now and am really praying for that boring life to start..... any ....second .....now....
My wound vac (a really cool piece of technology that uses a vacuum to help big wounds heal faster) got a blockage at 2 am on Saturday morning and I spent the rest of the night trying to resolve that. I finally called the home health care nurse at about 5 am, and she said she would send someone out in the AM to change everything, just to turn it off for now. I had dealt with her before and I trusted her. I did what I was told, but the on call nurse for Saturday (I had not had dealings with her before) did not want to come out to help me. She kept insisting that she would just walk us through changing the canister~ when Cary and I both knew just by the process of elimination the canister was not the problem. Both Kim and Donna, the nurses that came out to my home were lovely, but we were both sort of frustrated by Gloria. Being an on call nurse means by definition, covering any problems that arise~ am I too far off base on that one?! grrrrr....
Anyway, long story short, we were fine just letting it be until Monday as I had a followup appointment with Dr. Soukiasian, and we knew he would handle this no problem.
Well, then about 10:00 am, I was mid dose giving myself medicine through my feeding tube, when it got unimaginably clogged. I was next to tears as I had tried to be so @###!!##T&** careful about flushing it, even going so far as to flush it whenever I took a sip of water. That way I knew I was WAY over the minimum amount of before and after each dose of meds, before and after each feeding and 4 x a day on top of that. This was a bit more serious, so I called the home health care nurse again, and she advised me to go to the local urgent care. We both were not comfortable with that, so we called the on call dr . for Dr Soukiasian, Dr Parker. She told us to come into the ER and in the meantime try to put Diet Coke (of all things) into the tube on the drive up. Apparently it sometimes helps to breakup blockages. Who knew?!
Well, as we were getting ready to leave, Cary called poor little Haley bug (she took this weekend to go on a river rafting trip),and bless her heart, she cut the trip short and immediately headed here to watch the boys for us. And she was so sweet and cheerful about it!!! ( people - never wonder why I love these kids so dang much!!!) Just as we hung up, our home teacher called us and asked what he could do for us (THANK YOU QUINTON for listening to that little voice!!!!!). He and his sweet family watched the boys until Haley could make it the nearly 4 hours back from Bakersfield.
Long story short, new feeding tube put in,wound vac taken off and wet to dry dressing applied and Cary is now trained how to do that new kind of dressing. I was so proud! He didn't faint or get queezy once!!! I have to admit, we've both kinda toughened up a bit since all this started... I could be wrong, but I really think we are tough enough now and am really praying for that boring life to start..... any ....second .....now....
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