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My Status Update and a Minor Success

WildGoose7's picture
WildGoose7
Posts: 34
Joined: Aug 2009

Well, I've a really grueling week this past week. It was the completion (almost) of 3 weeks of radiation as I differed 2 days due to being out of town and in another hospital, and the start of the third week of chemo. I continue to get constant 5FU and daily radiation. Surprise surgical consults, and a procedure in Kansas City to put in a feeding tube. That couldn't be done as the GI doctor couldn't get the scope past my cancer in my almost totally occluded esophagus. I got a nickel and titanium wire stent instead. Makes drinking water sooo much easier! Had my recheck yesterday morning. Dr. Rostogi gave me a list of prohibited foods; breads and leafy greens, that I cannot eat then on the shuttle back to Topeka to oncology to replace my 5FU constant pump. Got home last evening and went to sleep.

Tonight was a red letter supper. I ate 1/2 of a baked potato with sour cream and a fried fish fillet. First solid food I've been able to eat and not have it back up in my esophagus and then blow out since early May. Tomorrow evening will be grilled burgers and baked potato! Damn, I almost feel normal. I still have a slight pain in my chest from the placement of the stent, but was told that it would go away in a few days.

This Tuesday I'll get my bi-weekly dose of Oxaliplatin chemo for about 3 1/2 hours in the hospital. That stuff is tough and knocks me down to parade rest with lots of nasty little side effects. I'm operating in something close to slow motion, am overly conscious of where I walk and intermittently use a cane to steady me up. If I'm not at the hospital early in the morning, Lori has to flush my 'blood draw' line on my PICC line. She also has to do it every evening. I work the syringe, as she refuses to do so. I've only lost 42 pounds since the start of being sick. Now down to my high school graduation weight. I hope to stack on some weight now that I can eat small amounts of real food again.

My neighbor and a 'one armed man" (me) installed the over-the-range microwave this past week in one of my free hours. Fits perfectly in the new cabinet space. I have 3 doctor appointments this Monday morning and 2 the next day. No wonder I'm tired out!

All my best from the Wilds of the Kansas Tallgrass Prairie

Mike

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Mike,

I'm so glad they were able to give you a stent and you can eat now!! I have an ng tube that is draining all the bile building up in my stomach, and all I can have is ice chips. And, what do I do? Torture myself by watching food network. ha. I hated Oxiliplatin, I only had 4 rounds of it, but horrible cold sensitivity. Hang in there and enjoy the food!!

Cathy

WildGoose7's picture
WildGoose7
Posts: 34
Joined: Aug 2009

Cathy

I watch the food network a lot, even when I'm in the hospital, too. I love to cook, but hate to bake unless absolutely necessary, HA.

I, too, have experienced the severe cold sensitivity with the Oxaliplatin. It also really takes the 'wind out of my sail' and all I want to do is sleep.

You just get well!

Best wishes and prayers.

Mike

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Mike,
Boy what a week you had!! I just can't believe a stent could open up enough to eat a baked potatoe and a fried fish filet!! I don't know how you are walking around at all with all that 5 FU being pumped in you. Do you have to get IVs to perk you up. I am getting one Iv a week to restore my fluids. My blood counts went down and felt like I have been walking thru mud. I am sure they are checking you. My portacath has been accessed every week for ivs and they don't make me flush it myself said it can go 30 days before it needs to be flushed. Amazing that you could help with the microwave install, you are one tough bird!!!HOpe now you gain some weight!!!! I am down 8 lbs but I am small so don't have much wiggle room. Your protocol is only similar to mine in that we both get 5 FU, I just get 96 hrs and am getting ready to go back in 10/5 for the cisplatin and 5 FU and then finish up my 5.5 wks of radiation and then 6 wks off before surgery which should be the beginning of December. My prayers are with you and your Lori.
Donna70

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hey Mike,

I was wondering why you hadn't had the stent put in sooner? I would have helped you all along. Al had his put in while they were doing his staging and doing his endoscopic ultra sound. This is why he still hasn't had to have a feeding tube yet.

Anyway I'm so glad that you have it now you will hopefully start to gain some weight back
and some of your strength!!!

Take care
God Bless
Kath

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