Well, I have been doing really well as of late, trying to get my house back under control (Its amazing what can happen if you are out of it for a year!) and just generally enjoying life. I have even debated about getting two matching belly button rings wherein my bonus daughter Carly suggested that I hook them together with a chain. Hubby said "EWWW!!!!!"and I just giggled evilly.
That was last week. This week Cary and I are a teensy bit worried. Not a bunch, just a tad. Scar tissue is building again and I am back on a soft foods diet (NO salad again dang it!) and am quickly heading to an all liquid one. That was fine and dandy when I had Dolores, I could just make up my extra calories via the tube. Before my surgery I had a bigger stomach and could keep my calories where I needed them just by volume. Now my tummy is basically a straw to my intestines and I don't have Dolores. I have NO reserves, so when I don't get enough calories I am wiped to say the least. I am fighting hard to keep them up and got to 1300 yesterday but only made 900 the day before. I tried to keep my energy up by drinking an energy drink, but that made it worse when I "crashed". Yes I am loosing weight, but I would NOT recommend the diet plan.
I lost about 36 pounds from June to now and could even loose about 30 more before I am in serious trouble, But I would prefer to loose the weight on MY terms thank you very much.
I have a dilation scheduled for as soon as Dr. Lo can do it which isn't until March, but I am on the cancellation list just in case (if a person cancels, I can claim their spot).
Sigh, at least I don't have cancer anymore ... *singing the old Monty Python tune "Always Loook on the Briiiight side of Life...fade out...
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 :)
Thursday, January 27, 2011
Wednesday, January 19, 2011
Dolores has been evicted! No mooree feeeeeding tuuuuube... (that was me singing...) .
I am eating normally, and since Dr. Soukiasian didn't cut my pyloric valve ( injected it with botox thingy ~ remember?) I am having NO acid reflux unless I do something stupid like eat something really spicy or chocolaty. Since I can control that, I am good! I am loving the fact that I have no doctors in my life! (no offense to all the wonderful medical staff that has so amazingly saved my life). A PET scan every six months AND that is it!!!! I do have to keep an eye on my swallowing abilities (when I put it like that it sounds like a super power doesn't it ~) and if that is ever compromised I need to go in for another
I am having a bit of drainage at the site of the eviction, but Dr. Soukiasian said that is pretty normal. I think it is making me a bit blah, but I am staying on top of this time and if anything seems "off" I am to call the doctor immediately.
As per my sister I am supposed to be a hypochondriac from now on. *whispering out the side of my mouth* yeah, THAT'll happen.... Um .... I mean suuuure sis , just for you, I will.
Saturday, January 15, 2011
Ok, why did I JUST find out that 4 x 4 s or 3 x 3 gauze squares and medical tape is cheaper to buy from tattoo places?! Especially online suppliers for tattoo parlors.
Now that I don't need them after Tuesday. The tape and the gauze, not the tattoos. The tattoos you just never know...
*whispering*
The final plan for Dolores extermination is set for the day after Monday. Don't tell her mmK? Thanks, I don't want to risk her mounting a counter attack. I'll let you know how it goes. Wish me luck, we're goin' in...
Now that I don't need them after Tuesday. The tape and the gauze, not the tattoos. The tattoos you just never know...
*whispering*
The final plan for Dolores extermination is set for the day after Monday. Don't tell her mmK? Thanks, I don't want to risk her mounting a counter attack. I'll let you know how it goes. Wish me luck, we're goin' in...
Thursday, January 13, 2011
I have to say, having kids is wonderful. And not just because they say hilarious things to make you giggle when nobody is looking. They are good for you even when you don't KNOW they are good foor you.
Case and point: Remember that tummy bug I had right before I started bad mouthing Dolores and her fashion choices? Well, it wasn't a tummy bug. Dolores decided to shift around a bit too much and started leaking the contents of my small intestine into my body cavity. Eww BTW. Dolores is just gross. I am warning you. At this point, stop if you cannot handle nasty stories or if you haven't quite finished that danish.
My tummy region was getting more and more painful until yesterday it hurt even to take a step. Did I go to the doctor like a sane person would? Of course not. I figured I could handle it and I really didn't have the time or money to go traipsing off to the ER every time I had an ache or a pain. Let's face it, if I did that, I would be there all the time and I would REALLY get on the nerves of the triage nurses, not to mention hubby's work with all the emergency time off he has had to take.
So there I was, hurting, but stalwart, helping Nathan with his homework. Now you gotta understand, times tables are hard for an 8 year old, so when he got 100 % on a quiz I just gave him He got REALLY excited. In his victory dance, he accidentally bumped my tummy. It wasn't a hard bump, kinda more like a nudge, but it was enough to make the room do this weird little dance and turn kinda funky dark for a second. Once I was able to get the pain under control, I realized I was "gushing" (Final warning here people, those of you with weak constitutions exit the theater to your right). His nudge had popped the "sac" of crap (literally) that was building up just under the surface. I will spare you the details from here. (even I have my limits of grossness). It drained for the rest of the day and don't worry, I called the doctor to see if it was something I needed to worry about. I was told, nope, as long as I don't have any more major pain, it stops draining after about 24 hours and don't get a fever I would be fine.
Oh and I couldn't use Dolores anymore until I could be seen (I don't really need her anyway so pbbbthhh). All they would do is take an xray with contrast to make sure she wiggled back into place, but since I am not really using the tube feed anymore anyway, I don't see the point (I really don't learn do I).
Nathan felt awful. It took me a long time to explain to him that he actually HELPED me and I was really alright. I could see in his eyes he didn't really believe me, so I made sure I let him crawl up on my lap for reading time that night to snuggle with only him while I read to him in my big recliner. I think that helped, but I traumatized my poor kid. I hope someday he will realize how wonderful he is and that he saved his momma from a whole heck of a lot more yucky stuff and that I think that having kids to save you from infection and gut leakage is A.mazing.
Case and point: Remember that tummy bug I had right before I started bad mouthing Dolores and her fashion choices? Well, it wasn't a tummy bug. Dolores decided to shift around a bit too much and started leaking the contents of my small intestine into my body cavity. Eww BTW. Dolores is just gross. I am warning you. At this point, stop if you cannot handle nasty stories or if you haven't quite finished that danish.
My tummy region was getting more and more painful until yesterday it hurt even to take a step. Did I go to the doctor like a sane person would? Of course not. I figured I could handle it and I really didn't have the time or money to go traipsing off to the ER every time I had an ache or a pain. Let's face it, if I did that, I would be there all the time and I would REALLY get on the nerves of the triage nurses, not to mention hubby's work with all the emergency time off he has had to take.
So there I was, hurting, but stalwart, helping Nathan with his homework. Now you gotta understand, times tables are hard for an 8 year old, so when he got 100 % on a quiz I just gave him He got REALLY excited. In his victory dance, he accidentally bumped my tummy. It wasn't a hard bump, kinda more like a nudge, but it was enough to make the room do this weird little dance and turn kinda funky dark for a second. Once I was able to get the pain under control, I realized I was "gushing" (Final warning here people, those of you with weak constitutions exit the theater to your right). His nudge had popped the "sac" of crap (literally) that was building up just under the surface. I will spare you the details from here. (even I have my limits of grossness). It drained for the rest of the day and don't worry, I called the doctor to see if it was something I needed to worry about. I was told, nope, as long as I don't have any more major pain, it stops draining after about 24 hours and don't get a fever I would be fine.
Oh and I couldn't use Dolores anymore until I could be seen (I don't really need her anyway so pbbbthhh). All they would do is take an xray with contrast to make sure she wiggled back into place, but since I am not really using the tube feed anymore anyway, I don't see the point (I really don't learn do I).
Nathan felt awful. It took me a long time to explain to him that he actually HELPED me and I was really alright. I could see in his eyes he didn't really believe me, so I made sure I let him crawl up on my lap for reading time that night to snuggle with only him while I read to him in my big recliner. I think that helped, but I traumatized my poor kid. I hope someday he will realize how wonderful he is and that he saved his momma from a whole heck of a lot more yucky stuff and that I think that having kids to save you from infection and gut leakage is A.mazing.
Monday, January 10, 2011
Guess what!? I got word that Dolores is in her final days baby! I am keeping my calories high enough that I can stop the tube feeding!
Sort of.
I kinda got a tummy bug, so I gotta go back on for a day or two, but then, *evil chuckle* we can continue with our nefarious plans to rid our household of this abhorrent, deplorable, dis-likable, ill-favored, intolerable, invidious, loathsome, lousy, noxious, obnoxious, offensive, opprobrious, regrettable, reprehensible, repugnant, repulsive, revolting, unacceptable, undesirable, unpalatable, unsatisfactory, unseemly, unsuitable, unwanted, and unwelcome visitor that has abused, offended, abased, affronted, aggravated, annoyed, blistered, debased, dishonored, disobliged, dumped, flouted, injured, irritated, jeered, mocked, outraged, provoked, reviled, ridiculed, roasted, scoffed, slammed, sneered, snubbed, teased, underestimated,and vexed said household.
I thought I would include a nice sterile pic of Dolores relatives before she leaves...Don't worry, I'm not gonna post nasty pic of my belly...
Sort of.
I kinda got a tummy bug, so I gotta go back on for a day or two, but then, *evil chuckle* we can continue with our nefarious plans to rid our household of this abhorrent, deplorable, dis-likable, ill-favored, intolerable, invidious, loathsome, lousy, noxious, obnoxious, offensive, opprobrious, regrettable, reprehensible, repugnant, repulsive, revolting, unacceptable, undesirable, unpalatable, unsatisfactory, unseemly, unsuitable, unwanted, and unwelcome visitor that has abused, offended, abased, affronted, aggravated, annoyed, blistered, debased, dishonored, disobliged, dumped, flouted, injured, irritated, jeered, mocked, outraged, provoked, reviled, ridiculed, roasted, scoffed, slammed, sneered, snubbed, teased, underestimated,and vexed said household.
I thought I would include a nice sterile pic of Dolores relatives before she leaves...Don't worry, I'm not gonna post nasty pic of my belly...
Dolores's cousin is the pink one on the left. Dolores is a bit longer as this her pediatric cousin, Infantem's Dolore Asinum |
Ok, Ok, so maybe she wasn't ALL bad...
She DID feed me for 8 months.
Ya gotta understand, it is sorta a love/hate relationship...
very twisted...
very twisted...
Monday, January 3, 2011
Isn't it amazing that the biggest problem we had the other day was that it rained when we were at Disneyland?!
Hey, it cut down on the crowds, and we had the fun of looking like smurfs!!! Thank you Bub for an awesome Christmas present! |
Benjamin Smurf |
Jonah Smurf, AKA Sonic Smurf |
Nathan Smurf |
Daniel Smurf |
Daddy thought being a smurf looked stupid, so he opted for the "I'm freezing my butt off and my jacket now is weighed down with 87 pounds of water" look... |
Momma Smurf (AKA me) looking particularly goofy... |
They loved the rain. And I love my boys... |
See, it DID stop raining! Eventually. |
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