Ok the danger of telling a friend that you need her to come over and get your butt off the couch to go walking even if you do not feel like it - is that she will remember ~ and get your butt off the couch to go walking even when you REALLLLYYYYY don't want to. I am glad I went, but man it seemed so hard today. So despite all my grumblings, thanks Steph, I love you, even though I looked at you really mean at first...
It has been heaven being home. I am enjoying my kids, my hubby and my new house every second. I am also ecstatic I don't have to start poisoning my body again on Monday! I would just get feeling like I could handle stuff again, when the weekend would end and I would start the yucky stuff again. Did I mention I was thrilled about not having to start that up again?
I actually felt good enough to go pick up Nathan from a birthday party this afternoon! I just loved hearing all the noise and excitement and joy and kazoos....It made me smile wide. I also giggled at Cary playing with the boys today. I love just listening to the sounds of family life. I really missed that.
Completely off subject, I found this pic and cant decide if I am more disturbed that it is so instructional or that it is posted in such a public place...
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 :)
Friday, April 16, 2010
I AM DONE with radiation and Chemo! I AM DONE with radiation and Chemo! say it with me now, I AM DONE with radiation and Chemo! I get to rest for awhile now, I'll have tests and stuff before the surgery, but nothing too terrible. I feel like I just peddled up a really steep hill and now am at the top looking forward the coast down the other side.
I am just so thrilled to be home. I missed my family so much. I guess little Jonah kept telling his daddy , " Dad I weowwy (really) need my mommy!" Cindi drove me back today and then is heading back home to Virginia tomorrow. I have really enjoyed her company and have been thankful for her help.
I am also thankful there is not a huge move looming ahead of us! We can finish unpacking a box at a time, but the hard part is done! HOrrraaayyyy!!!!
I am just so thrilled to be home. I missed my family so much. I guess little Jonah kept telling his daddy , " Dad I weowwy (really) need my mommy!" Cindi drove me back today and then is heading back home to Virginia tomorrow. I have really enjoyed her company and have been thankful for her help.
I am also thankful there is not a huge move looming ahead of us! We can finish unpacking a box at a time, but the hard part is done! HOrrraaayyyy!!!!
Thursday, April 15, 2010
ONE MORE TREATMENT!!!! Can someone please start the song "the final countdown"? I think it would be appropriate. If I felt better I would be dancing right now...For now I will content myself in packing up the apartment
On the homefront, I guess Bub is leaving today, and once a.gain, I will not be home to see a person off who has helped our family so much. Bub, thank you so much for all you did and most of all for taking such good care of my babies. Have a safe trip and I promise, we will not come to visit for at least two years... :) Give my love to all those in Vernal.
My sister found this little gem, it kinda fits...
On the homefront, I guess Bub is leaving today, and once a.gain, I will not be home to see a person off who has helped our family so much. Bub, thank you so much for all you did and most of all for taking such good care of my babies. Have a safe trip and I promise, we will not come to visit for at least two years... :) Give my love to all those in Vernal.
My sister found this little gem, it kinda fits...
Wednesday, April 14, 2010
I was walking down the hall tday after my treatment just gloating about the fact that I only have 2 more to go! yes! ( imaginary fist pump there in case you were wondering) I could not be happier. Because I have to lay flat for the treatment, it is always a race to see if the heartburn starts hurting first or if the radiation gets done first. The last week or so the heartburn has been winning a lot. I just go back to the apartment, load up on pain meds and take a nap. I feel like I have slept WAYYYY to much these days. Don't get me wrong I am grateful to be in a place here I CAN sleep. I know it is helping my body heal, but man it just is NOT in my nature.
Tuesday, April 13, 2010
ok, for those of you ever planning on getting esophageal cancer, first off don't. Then, if you do, make sure you take your anti nausea pills. Next, ask for a drug called MMX. It is an antacid that has lidocain ( iread topical pain killer) in it as well as antifungal properties ( helps control mushroom outbreaks ~ well either that or Thrush) .
I have a massive headache tonight so I wont write much. Just that I only have 3 more days of treatment! And that Jonah went on a field trip to see the aquarium at legoland. And that Ben told me, again, that he is changing his name from batman to Ben 10. Jonah is still Sonic. Good to know these things...
I have a massive headache tonight so I wont write much. Just that I only have 3 more days of treatment! And that Jonah went on a field trip to see the aquarium at legoland. And that Ben told me, again, that he is changing his name from batman to Ben 10. Jonah is still Sonic. Good to know these things...
Monday, April 12, 2010
really hurty today, and to make it even better, I have gas something fierce. Just thought you might all like to know that. I got my treatment done, and then took some pills and promptly went to bed. Ah life in the fast lane here in L.A.! It has been a huge help to have my sister Cindi here. She gets to hear me burp a lot.
At home, Cary and Bub worked thier butts off to get the new house habitable for me to come home to. A lovely couple Cary met though work came over and helped as well. Thanks Stewart and Deb! Poor Cary would have been lost without you!
I was just so tickled to see my boys. I miss them so much when I am gone. They totally loved being on spring break and I am so happy this move happened now instead of during school. It was adventure for them instead of a stress. We won't talk about Cary and his stress levels bless his heart.
Because the brain is not working today and I worry I might divulge some deep dark bad hair day secret, I might have to make this one a short one today. woops. too late...
At home, Cary and Bub worked thier butts off to get the new house habitable for me to come home to. A lovely couple Cary met though work came over and helped as well. Thanks Stewart and Deb! Poor Cary would have been lost without you!
I was just so tickled to see my boys. I miss them so much when I am gone. They totally loved being on spring break and I am so happy this move happened now instead of during school. It was adventure for them instead of a stress. We won't talk about Cary and his stress levels bless his heart.
Because the brain is not working today and I worry I might divulge some deep dark bad hair day secret, I might have to make this one a short one today. woops. too late...
Thursday, April 8, 2010
Didn't feel too good yesterday, Ok pretty lousy actually, so I didn't blog. My main focus was on not loosing my lunch and perhaps even not spending my night next to the toilet... Ah the joys of the chemo drug, Oxiliplatin! As bad as it was, it was NOWHERE near as bad as last time thank you very much and my veins all stayed in tact. I am thankful for that much at least. I still have the pins and needles feelings as well as the owies up and down my arm at the sight of the infusion, but ll in all I think I weathered this pretty good. Dr Van Scoy Mosher, (my oncologist), said that I "have tolerated treatment very well". Then he added " Within reason, I think that is because you decided to tolerate it well.". Well I was pretty proud of myself thank you very much! Then I thought of the alternative to "tolerating " the treatment and figured, yeah, If I would have refused treatment I think I could have kissed my bottom goodbye and never be a huge embarrassment to my beautiful boys as they go through puberty, or been able to be a pain in the butt to my wonderful husband when he got old and crotchety, or even get old and join the Red Hat Society, ~ all of which I look forward to with great gusto.
Well, I am feeling a bit "peaked' as they say, so I will fill the rest of this day with pics I took before I started feeling so nasty...
Well, I am feeling a bit "peaked' as they say, so I will fill the rest of this day with pics I took before I started feeling so nasty...
views of the walk I get to enjoy on the way to the hospital
This one is my favorite :)
Tuesday, April 6, 2010
Ok, to make up for yesterday, I will write a very long and boring update today. Ok I'll try to keep it not too boring...
Easter was wonderful. A really adorable Easter bunny named Haley brought the boys Easter baskets with some really cool stuff in them. Then an amazing Easter bunny from my radiation group and my Easter bunny oldest sister added to them. Those boys had some amazing loot let me tell you! Then, if that wasn't enough, my dear and sweet neighbor Easter bunny hid eggs in the front yard and the boys had an Easter egg hunt! Then, a wonderful ward member Easter bunny brought us Easter dinner complete with ham and cupcakes! We have had quite a few bunnies come 'round this year and we are amazingly grateful to each and every one. My boys had a wonderful day because of them and ONLY because of them.Thank you Easter bunnies. You know who you are. :)
The move is progressing nicely. Bub and Cary have been slowly but surely taking loads over to the new house and they have most all the big stuff done now. It was really helpful to have Haley take the kids for as many hours as she did! The boys had a blast with her and it kept the little munchkins out from under the workin' men's feet. The guys still have the family room and appliances, as well as day to day clothes and dishes to take over, but as I said the bulk part is pretty much finished. And I haven't done squat.
Haley and Brian (Haley's boyfriend) took me back to LA and it was nice to be able to spend time with them. They are such amazing kids. I guess Carly Sue is in New York now and Aaron is on his way back to Bakersfield. I always keep a prayer in my heart for them, but when they are far away it seems all that much more important. I just love my family so much.
Ok now to the part as to what they don't tell you about cancer and its treatments and meds... First, the gastric flip flops ~ already wrote about THAT subject, next, I was told I might get a really sore throat from the radiation. How 'bout raw, open wound sore throat where the radiation hits and ONLY where the radiation hits and heartburn that would make a grown man fall down and cry. Tired, fatigue, nausea, all expected and warned of.
After each infusion I can have NOTHING cold. Even room temp seems to set off "pins and needles" in my fingers and hands. I get really cold when I take the infusion, and because cold = pain, I wear gloves and my blanket. I need to warm up even water to drink, but not too hot or it could do more damage, hence no heating pads or electric blankets. I have found that everything luke-warm is perfect. On top of all that, I get violently ill for about the next 24 to 36 hours and just feel lousy for about the whole next week after the infusions. Zofran doesn't seem to help all that much, so I will be asking about a drug called Emends. Its costly, but other patients swear by it. Of course one patient swears by young coconut milk and active manuka honey, but since those are both just a bit - ok a LOT costly - and haven't been really tested or studied, I think I'll stick with the tried and true. If I get desperate I might be changing my tune on those...
I also need to watch to make sure my vein doesn't break during the infusion. That is what caused the swelling and pain at the top of my arm from the last one. Pain at the infusion sight and somewhat above it is apparently normal, but not all the way up to my arm pit.
Can not wait to find out what I don't know about the surgery!
Easter was wonderful. A really adorable Easter bunny named Haley brought the boys Easter baskets with some really cool stuff in them. Then an amazing Easter bunny from my radiation group and my Easter bunny oldest sister added to them. Those boys had some amazing loot let me tell you! Then, if that wasn't enough, my dear and sweet neighbor Easter bunny hid eggs in the front yard and the boys had an Easter egg hunt! Then, a wonderful ward member Easter bunny brought us Easter dinner complete with ham and cupcakes! We have had quite a few bunnies come 'round this year and we are amazingly grateful to each and every one. My boys had a wonderful day because of them and ONLY because of them.Thank you Easter bunnies. You know who you are. :)
The move is progressing nicely. Bub and Cary have been slowly but surely taking loads over to the new house and they have most all the big stuff done now. It was really helpful to have Haley take the kids for as many hours as she did! The boys had a blast with her and it kept the little munchkins out from under the workin' men's feet. The guys still have the family room and appliances, as well as day to day clothes and dishes to take over, but as I said the bulk part is pretty much finished. And I haven't done squat.
Haley and Brian (Haley's boyfriend) took me back to LA and it was nice to be able to spend time with them. They are such amazing kids. I guess Carly Sue is in New York now and Aaron is on his way back to Bakersfield. I always keep a prayer in my heart for them, but when they are far away it seems all that much more important. I just love my family so much.
Ok now to the part as to what they don't tell you about cancer and its treatments and meds... First, the gastric flip flops ~ already wrote about THAT subject, next, I was told I might get a really sore throat from the radiation. How 'bout raw, open wound sore throat where the radiation hits and ONLY where the radiation hits and heartburn that would make a grown man fall down and cry. Tired, fatigue, nausea, all expected and warned of.
After each infusion I can have NOTHING cold. Even room temp seems to set off "pins and needles" in my fingers and hands. I get really cold when I take the infusion, and because cold = pain, I wear gloves and my blanket. I need to warm up even water to drink, but not too hot or it could do more damage, hence no heating pads or electric blankets. I have found that everything luke-warm is perfect. On top of all that, I get violently ill for about the next 24 to 36 hours and just feel lousy for about the whole next week after the infusions. Zofran doesn't seem to help all that much, so I will be asking about a drug called Emends. Its costly, but other patients swear by it. Of course one patient swears by young coconut milk and active manuka honey, but since those are both just a bit - ok a LOT costly - and haven't been really tested or studied, I think I'll stick with the tried and true. If I get desperate I might be changing my tune on those...
I also need to watch to make sure my vein doesn't break during the infusion. That is what caused the swelling and pain at the top of my arm from the last one. Pain at the infusion sight and somewhat above it is apparently normal, but not all the way up to my arm pit.
Can not wait to find out what I don't know about the surgery!
Monday, April 5, 2010
quick entry just because I didn't write all weekend. I was able to go home to enjoy Easter with my family. Haley Bug came down to help with the kids while Cary and Bub took loads over to the new house, and I was once again a lazy bum sitting on the couch. I was kinda disappointed that our cable company stopped carrying conference. I will watch it online this week instead though. will write more later, gotta run to appointments ...
Thursday, April 1, 2010
I am so proud of myself! Even though I didn't feel good today, I walked to and from the hospital and to and from the grocery store! that's about 3 miles total. I needed to get out of the apartment as I was going a bit stir crazy. Anyone who daydreams about scrubbing carpets, needs a change of scenery. I am just too much of a social animal to be a solitary resident.
Living here in West Hollywood has given me a beautiful place to stay, a safe neighborhood to live in and nice sense of small community, even in the big city. But it is also giving me some prejudices! It is getting harder and harder for me to think of good looking, well dressed young men as straight! Most of these guys are impeccably groomed, most of the time have a really adorable dog, are dressed a HECK of a lot better than I am~ and are in much better shape. I'm a little jealous! OK a lot jealous...
Living here in West Hollywood has given me a beautiful place to stay, a safe neighborhood to live in and nice sense of small community, even in the big city. But it is also giving me some prejudices! It is getting harder and harder for me to think of good looking, well dressed young men as straight! Most of these guys are impeccably groomed, most of the time have a really adorable dog, are dressed a HECK of a lot better than I am~ and are in much better shape. I'm a little jealous! OK a lot jealous...
ewwwwww........Not jealous of THAT!!!!
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