iowagirl
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Kris…boy do I hear and understand your frustration. Hope that Marian is right….improvement in baby steps. I’m right with you on the lack of the doctor calling personally….and having to re-explain to nurses the problem over and over. It’s one of my biggest frustrations with medical care. You’d think when you get one of the “big ones”, that they could cut some slack and give some more personalized care…..as if we don’t have enough to deal with, living as patients and caregivers with this crap disease.
Hugs from Iowa Girl
Julie T.Susie…what fantastic news. Raising my glass tp you this morning. Keep on truckin’.
Boy it was good to hear your good news today. As much as you needed it…we all do.
Julie T
Marian….the oncologist did consent to ordering a “poo” test for H. Pylori for me…..so now we will find out (hopefully) if the infection is active. If it is….then I’ll be treated….and if not….then nothing. Since I had antibodies in the blood test though….it is a certainty that I at least HAD H. Pylori sometime…and other than the Vancomyacin I was given for the C-diff…or it possibly being cut out by surgery.(at least in the liver)..nothing else I’ve taken for antibiotics could have gotten rid of it. It’s possible that the Vancamyacin killed off the H Pylori…but the damage was already done in the liver/bile ducts….but that doesn’t explain the diarrhea that continued for 5 months until I took a Z-pack antibitoic that made it go away…if only for 2 months. There are too many unanswered questions with this….and I just need to get someone…doctor type….to take it further. I’m just hoping that the poo test will actually show if the H Pylori is still in my body….and that it isn’t lurking in my gall bladder or somewhere that the test won’t detect. Sigh.
Julie T.
Darla….I’m in Marion, but it’s connected to Cedar Rapids…..and in addition, I’m originally from Cumberland in southwest Iowa….where I grew up….very close to Walnut. Small world indeed. Casinos huh? Yup….there are a “few”.
Hmmm….that was an interesting read. I was on a 325 mg aspirin for at least several years after my heart attack in 2002 (very mild…little damage…but a wake up call). Then, I was switched to one baby aspirin per day which I maintained until about 2 years ago, when I added one more baby aspirin…one in the morning and one at night before bed (I don’t know why…except I was feeling uneasy about things and maybe concerned with clotting because my blood sugar was out of control and I was more concerned with that at the time????) Anyway, when I had the CT that discovered the tumor, I quit taking ANYthing that I didn’t think was absolutely necessary,…and esp aspirin, so I wouldn’t have to wait for any other tests like the biopsy to be done. (It sped up somewhat an otherwise process that was far too slow).
Now…to read that “maybe” me being on asprin all that time might have kept my cancer from spreading….really is a good way to end this day. Of course, it didn’t keep me from getting the cancer….but I still believe it came from having H. Pylori invade my bile ducts. But, if the aspirin could have helped keep it from spreading…..shout it to the rooftops!!!!!!!!!
Julie T.
Darla….we’re practically kissing cousins….Iowa…Wisconsin….just depends on where in Wisconsin…..a big state! We’re in Eastern Iowa …about the center…an hour from Dubuque.
I suppose now isn’t the time to take up having a drink, if I really didn’t do it before….but now I want all the stuff that I shouldn’t have. I may get an NA beer tonight….just for the heck of it…..thanks for that idea Lainy….I forgot all about NA.
Darla….It’s fun to hear that there’s someone else out there with my same favorite sweet tooth item. It seems it’s my “go to” treat since being diagnosed. I cut the Kringle up into 8ths…which is the serving size…and put each piece into a small snack baggie….so I’m not tempted to keep cutting a “little more”. Since I have type 1.5 diabetes and am on insulin, I need to watch my carbs….and esp now so that the blood doesn’t get too thick and make more risk of clots. Oh man,…..now all I can think of is the Kringle. Need to get in the car and run errands to get away from those baggies of sweet goodness.
Wish we could get together and enjoy some Kringle and coffee together sometime. You never know.
Julie T.
Margaret and Darla…..this will be my shortest post ever. Same here….every other cancer eliminated and this was the last one standing. Wasn’t confirmed until the pathology of the tumor and liver after surgery.
Julie T.
Dukenuken…..THANK YOU…..for a great ending line to another great response post. I think some of your way of thinking is spilling over onto me and it’s making me actually happy…..and not so fixated on those statistics. The one good thing that my current onc said to me during the initial consult, was, “Those statistics don’t mean anything in regard to you….the only thing that matters is where YOU are.”
And…thank you for sharing that you were eating such “horrible food”.
I had a very good supper….but craved something sweet…and had a piece of Danish Kringle…almond filling….and I have to say, I enjoyed each nibble, as I made it last for quite a while. I agree about the quality of life. If there are things you enjoy,…..you should let yourself have that option. It is a personal choice…..and when you have those guilt food moments…do them with no guilt and enjoy! The only thing I don’t allow myself is alcohol..which is funny because I rarely drank…maybe one or two drinks a year…so not really a great problem on my part. If the manufacturer says to give it over 6-8 hours…why do they try to do it in 1-1.5 hours then? Does doing it faster make it work better?
Jason, interesting that they gave your wife another bag of fluids between the Cis and Gem…..as they did not do that with me on Tuesday….just the initial bag.
Julie T.
Porter….I feel absolutely great tonight….actually as of mid afternoon or so, I really hit my stride…..tightness in my chest was gone….red and hot rash on my face was gone…shortness of breath gone…..chills and shaking from night before were gone…no more itching…edema in my legs was gone except for the normal small amount usually there from standing on my feet for years. know it’s only one infusion…the first one…and I’m fixating on everything, but it’s happening to ~me~….and it’s all pretty scary when you don’t know. I was taken back by feeling so crappy the day of the chemo and next day since I thought most people didn’t have any issues until the 3rd day or so. Unless something huge suddenly hits tomorrow on the actual day 3….then I can put this one behind me I think. I’m still concerned about the itching which didn’t go away without Benadryl and must report that. Going to make up a list of things as I know I should do. I do think that the fluid retention thing got out of hand the day of the chemo because the oncologist was too busy to come check me out and even after I had tightness in my chest, he still didn’t come…..just about 10 feet away in an office. I know the guy cares about his patients, but I’ve talked to someone else who was with their friend getting chemo elsewhere in town….and when someone in the chemo room had a similar situation to mine…tightness in her chest…a code was called and three oncologists were at her chairside in a couple minutes trying to get the problem fixed. When stuff like this happens….and your gut says it shouldn’t be this way, you start to question everything….and confidence level goes down….just not a good way to start out something like this.
Marion…thanks for the advice on moving around more. I was just so shocked that my legs were hurting so much from fluid retention while still even in the chair getting the chemo…and then when I tried to walk, the extra fluid was more than just uncomfortable. The fact that they had to use some injection to get my body to move out urine probably points to a problem. Once I got home, I didn’t want to move…but later that night I finally decided I had to walk some…to try to move blood through those legs of mine. I could only do it for 5 minutes…before I was too short of breath and it hurt to breathe…a bad tightness in my chest similar to what I felt during the last half of the chemo earlier that day. No gastric problems yet…nausea or otherwise. The chemo was on Tuesday….and today is only Thursday. I was expecting the first several days to be good and then get hit by some side effect on Friday…the third day, right? But today….I feel almost normal and on top of the world. If I get by tomorrow without any grief….I figure it’s just my weird body doing things in its own way and hang what it’s suppose to do.
)))) Next time with the cisplatin though…..I will definitely force myself to walk more, even if it does hurt. Who knows, I may not have the urine elimination problem again. It may be though, that I had an allergic reaction later with itching and burning….so have plenty to report to them about and questions. I know I’m pretty lucky all the same….and am grateful that at least one infusion is done …half way through the first round. To someone who has been through countless rounds…I’m sure I sound silly…but when I don’t know what to expect….I think I really get anxious.Marion….excellent idea about raising the legs for water rentention. On my first chemo, I held in a lot of fluid and almost couldn’t walk on my legs the first day because I sat in the recliner…but with my back upright, which doesn’t get your feet in line with or above the rest of you. Until I was in bed with two pillows under my lower legs and one under my knees for several hours, the fluid just wouldn’t move. It’ s pretty boring in that position when you’re awake, but really important to do.
Julie T.
