All I want for Christmas is: A Crohnie Christmas list!

Favorite Toilet Paper
Imodium
A good bathroom book
Jolly in the John Snowman (I saw this at the hallmark store and I love it)



He is motion activated. Watch the youtube video to see what he says

http://youtu.be/WADMOd76ujI

Directions to all the best bathrooms
Bathroom spray or matches
Emergency Underpants Dispenser



Toilet seat covers
Flat screen tv
ToastieTush Toilet Seat Heater



Love, Laugh, and Always know where the nearest bathroom is

They've Found Me!!!

The germs have found me and won’t go away. It started about two weeks ago. Sore throat, congestion, and just plain blah!!! Then in settled in my chest…cough, cough, cough. From there it slithered into my stomach all the while staying in my chest and sinuses. It hasn’t been real bad and hasn’t been keeping me at home (except last night…my tummy was not happy) but its very annoying. I’ve been hiding from germs for the past 6 months. God watched over me (as always) through the surgery and the chemo and the plastic surgery. I was very very careful to stay away from sick people and crowds. I didn’t get sick even when the germs were right in my own home (B and Hubby). So I guess I shouldn’t complain about getting this now. I hope it doesn’t last much longer. Baseball season is in full swing and I don’t want to miss any games. It has been very rainy so lots of baseball games have been canceled.

Baseball season means more than just games for me. It also is media guide season. If you’ve been a long time reader you might remember my rants this time last year (and the two years before that) about the media guide. I was determined not to do it this year but well seeing that its B’s senior year I wanted his last baseball media guide to be great. I didn’t want to leave that up to someone who doesn’t have a clue. That and of course no one “could” do it! One mom said she could help a little and then another mom said she could help a little too. Big whoop! So I am delegating. I have given them all the running around duties - distributing the information to the players, collecting their ads and money on the due date, collecting the ads and money on the extended due date, and guess what??? Even though I wanted to be done last week I am still getting ads. My part involves putting all the information about and pictures of the teams and coaches, pictures of the new field, and highlights of the previous season into my original template. Scanning in all the ads and putting the finished product onto a disk to be taken to the printer. I was planning on giving the disk to them to take to the printer but its getting so late I’m just going to do it myself. After its done and I pick up all the copies I’ll have them distribute them to players and businesses.

I’ll be going right from baseball and media guide season into planning B’s graduation party. The good news is that I’ve done one graduation party already for J and I plan on doing a lot of the same things. I also will have a lot of help from my family :)

Oh I have to also tell you that coach jackwagon (aka coach ff in previous posts) is not coaching varsity this year. He has moved on down to JV where he is (so I hear) just as much disliked by players and parents. He should have never been allowed to come back after all the things he did last year. I feel for the JV team but I’m so happy we don’t have to put up with him this final year. We do have a new coach on varsity. We haven’t seen him since he coached J back when he was in 9th grade on the freshman team. He coached JV for a few years then took a break from baseball. Thankfully he has returned and is assisting with the varsity team. We loved him when he coached J and we love him even more now. He is not only a great coach he is also a wonderful person. I’m sorry that we only had him as a coach for two years.

Btw it may be my imagination or just that my crohns was so active during chemo but lately it seems to be very well behaved (except for this bout of cold/flu/crud)…maybe even better than before all this cancer stuff. Wouldn’t that be wonderful if that continues :)

Love, Laugh, and Always know where the nearest bathroom is

Here I am

So…..here I am….I didn’t get swallowed up by the couch! As a matter of fact I am happy to say I am spending less time on the couch. I had my swap surgery and I’m praying that all the painful stuff is behind me now. I am slowly, slowly getting my energy back. I’ve started exercising again and I will never complain about dragging myself out of bed to exercise. I actually missed it.

As for my behind (and intestine) I am doing pretty well. I’m back to my normal bathroom runs. The four to six times a day seems like nothing compared to the 12 to 16 times a day during the chemo. I’ve stopped taking the flagel and so far the fistula has been calm. I have started the Tamoxifen which is causing horrible hot flashes…blah!

I’ve shared with you many times how much I HATE needles! Well before my swap surgery, when the very nice pre-op nurse came into start my IV she said the words I dread “You have very small veins”. This is never a good sign. So after tap tap tapping my arm and hand she gives it a try in the side of my left hand…strike one! She tries in my right hand…strike two. Sorry Ms. Nice Nurse today rule is two strikes and you’re out. She goes to get another nice nurse who isn’t very confident either but she does get it into my left hand on her first try. Ughhhhhhh!




At least this surgery was not as uncomfortable as the last. My new perky boobs are in and hopefully once the swelling goes down and everything falls into place they will look great (at least under my clothing :)

I am due for an appointment with my GI doc. During my last visit, before all the cancer stuff, he wanted me to have a colonoscopy in March. The last time I talked to the nurse I told her it was going to have to wait. I need a break from poking, prodding, and removing things. She completely understood.

Well it is March already and March for us means BASEBALL. J already went to FL for his spring baseball trip. His team did very well. He has a DH today but it’s away. His first home game is Friday so I’m looking forward to that. B however has his first scrimmage game today Yeah! I am very very excited. They will be playing on the brand new high school turf field.

I’ll let you know how that goes!

Love, Laugh, and Always know where the nearest bathroom is

Looking Forward!

Well its been a while since I’ve posted anything. I’m very happy to say that I had my last chemo on Feb. 8th. This one went well like the one before. No major diarrhea YAY = no need to go in for fluids three days a week. Now I just need to get my strength back. The oncologist is very pleased. I should be able to go off the flagel next week (looking forward to that). I hope that goes well because the abscess has been flaring off and on. I can’t stand taking the flagel. If I don’t swallow it just right it leaves a horrible taste in my mouth. My GI’s nurse has been keeping in touch with me. I will need to make an appointment after all my plastic surgery is done. (My swap surgery is next week double YAY hahaha.) I’m suppose to have my annual colonoscopy in March but I told nurse P that I’m going to wait for a while…I just want all my doctors to leave me alone for awhile. She completely understands. I’m really looking forward to NOT having a doctors appointment every two weeks.

Speaking of looking forward…its almost baseball season. I’m so excited to see my boys play. I should be feeling much better by the first game. J will be a starting pitcher this year!!! B is a senior so it will be his last high school season. I hope it is a great one for him. I also have to plan a graduation party for him and enjoy his last summer of travel baseball. After that I want to go to the BEACH! I think I deserve a wonderful vacation with sun, sand, ocean, and of course a fabulous hotel suite :) Hubby travels to FL a lot for work and since both my boys will be in college I’m hoping to get to go with him in the fall and winter and spring and summer lol…every chance I can. Now that is something to look forward to!!!

Love, Laugh, and Always know where the nearest bathroom is

Happy New Year!

Well I had my second chemo and it went about the same as the first with a few improvements. I still had a lot of diarrhea and some abdominal pain but my fistula did not flare and I didn’t have nearly as much bleeding. I really do think that this is just a side effect of the chemo and not that my crohns is flaring because once I get through the rough part I am back to my normal normal. I did call my GI doctor about the severe diarrhea and he proscribed Lomotil. It did seem to help a little bit but not much. I was able to stay hydrated enough to stay out of the hospital. That however was quite an ordeal with a nasty nurse. If you want you can read about that in my other blog http://yourboobsoryourlife.blogspot.com/ Thankfully my GI doc understands what I’m going through and will help in any way he can. My appetite is good and I am very glad that I haven’t lost any weight so far. I really hope that doesn’t happen. Since I only have 2 more treatments left I don’t think it will. Well I hope everyone had a nice new years and that 2011 will be very happy and very healthy for all of us!

Love, Laugh, and Always know where the nearest bathroom is

Think Again

(This post will appear on both my blogs…so if you follow both you only need to read this one today :)

The bad days after chemo continued with all the aches and pains and constant diarrhea, bleeding, and fistula problems. On Sunday my temperature was back up to 101.5 and my heart rate was high. My hubby called the oncologist on call and he of course wanted me to go to the emergency room. So off I went thinking they would draw some blood, check me out, and send me home…Think again!!! Not only was my temp. and heart rate elevated, my blood pressure was high also. Their major concerns were of course infection. They put me on a heart monitor, drew lots of blood, started me on fluids, and did a chest x-ray. The next concern was “did the chemo flare the crohns?” If you haven’t guessed already they admitted me. They said they wanted to keep an eye on me for the next 24 hours. They gave me an IV antibiotic and settled me into a room and hung an isolation sign on the door…no germs in…no germs out! They increased the dose of Flagel. Clear liquids only and a pelvic CT Scan in the morning. They also hung another sigh behind me to alert other nurses



A precaution due to the lack of lymph nodes in both upper arms

I got absolutely no sleep that night. My IV pump (aka Fabio)





KAS don't look at the next picture :)




was SO LOUD. If I had something nearby resembling a baseball bat I would have beat the crap out of it. Around 4:00am I finally just turned the TV on. Early Monday I had my CT Scan and was expecting to get some real food but they still had me on clear liquids. When the GI from my group who was doing rounds and who I didn’t like at all came in (not my GI by the way) she was #1 rude to my husband and #2 gave me a hard time about letting me have a general or even a soft diet. Lets see…you want the diarrhea to go away but if all that goes in is liquid then ummmm what do you think is going to come out??? Besides that I know my body better than anyone esp. someone who has only looked at me for 5 minutes. I could see if I were in pain or had no appetite. She finally agreed to let me try a general diet and if things got worse I would have to go back to liquids. So she leaves and guess what??? She doesn’t write the order for a general diet. The nurse was wonderful. She kept trying to call and get an order. Of course the beotch would not call back. Four calls and hours later another doctor from the group called back and gave her the order. He said start with a general and if I have a problem tweak it. THANK YOU. In the mean time many other doctors came in, my PCP, the infectious disease doctor, and oncologist who all agreed I needed to stay another day. My white count was high but that was most likely due to the chemo. My potassium was low so they gave me some to drink :( Now if you’ve never had liquid potassium you’re lucky because it tastes like crap. After gagging my way through I got about ¾’s of it down.

Fluids, fluids, and more fluids = lots of peeing. Hubby brought me my iPod so that I could plug my ears with Christmas music during the night (to drown out Fabio). It worked…I slept very well. Tuesday was another full day of IV fluids. Fabio and I are becoming very close…he follows me around everywhere. They are still waiting on blood work results to rule out certain infections. The GI beotch doctor hasn’t been back, just her PA who is very nice. They are leaning towards this not being a crohns flare but just a bad time with the chemo. But just to be sure they want me to have a pelvic ultrasound tomorrow…yes another night with Fabio. The fluids have been very helpful. I haven’t had any muscle or bone pain since they started them. I definitely was severely dehydrated. I slept well again with my Christmas music. Wednesday morning I went down for the ultrasound. It turns out the CT Scan showed a little something something near the uterus and they wanted a closer look. Well if they would have said something I could have told them it was probably the same little something they saw on my CT Scan in the spring which turned out to be fluid in my fallopian tube…that’s exactly what it was. The infectious disease doctor came in and said I was negative for all the infections they were testing for but thought they might keep me for a few more days. NOOOOOOOO. My oncologist came in and decided that she did not want me to have the port put in. She is going to reduce the dose of chemo and have me come in early that day and if I appear to be dehydrated again they will give me fluids and if need be more fluids between then and the next chemo. If however I have another bad time with the chemo they will probably not do anymore. Then my PCP came in and said I could go home YAY. I got myself dressed and waited for my discharge instructions and the nurse says your potassium is still low so after I get that for you you can go. NOOOOOOO…she comes back with a pill…are you kidding me…this comes in a pill??? Where was your stupid pill a few days ago when I was gagging??? I took it and then on my way to Home Sweet Home!!!

Xoxoxo
Love, Laugh, and Always know where the nearest bathroom is

Crohns Meet Chemo

Well its been a while since I’ve posted. I’ll try not to take too long to catch you up. I’ve been spending a lot of time dealing with the breast cancer treatment which has not been agreeing with my crohns beast. Even before my first chemo I was anemic and had to have some iron transfusions. I did have some side affects but I don’t think they bothered the beast. Those treatments were followed by a very busy week which included my first chemo treatment (Mon.) The treatment itself (4 hours) went well. I was just very tired that day and the next and I had an increase in diarrhea. I figured heck, diarrhea, I can handle that. Then Wed. night I started to feel horrible, even more diarrhea now with some bleeding and the constant diarrhea flared the fistula. That night every inch of my body hurt. It was like tiny knives/shards of glass racing through my body stabbing me. The pain and diarrhea and bleeding and fistula flare continued Thurs. which was the day I had a consult appointment with the surgeon who was suppose to put the chemo port in the next day. My heartrate was high and I had a slight temperature so needless to say they postponed that procedure. Friday the muscle and joint pain eased up a little but I had bouts of nausea and esophageal spasms and stomach/intestinal cramping. It felt like my entire digestive tract was in a knot. I’ve continued to have moderate diarrhea with some bleeding off and on and occasional spasms. The fistula is starting to feel better but is still making it clear that he is there and not going anywhere. I have a call in to my GI (who won’t be back in the office till Monday) and I’ve spoken to the oncologist (the surgeon called her too) I’ll have my blood checked on Monday and see the oncologist on Tuesday. My temp. is back to normal and my heart rate has lowered. I’m hoping I’m on my way back to feeling normal (for me) for the next few weeks before I have to go through it all over again. I’m hoping that this first treatment just woke the beast up to say HEY what is going on??? Maybe the next time he will just say “oh you again” and go back to sleep. A girl can dream!

Love, Laugh, and Always know where the nearest bathroom is

The Angry/Why Me Place

The bowel saga continues…I went very quickly back to my version of normal and even quicker to the other extreme of major diarrhea. Fortunately that did not last long and I am back to my normal. Other than that the beast has been quiet. The fistula on the other hand flared right after I came home. Since then it has been draining a lot and goes from hurting really bad to hurting just a little and back to hurting really bad. Last night it was hurting really really bad. So bad that it sent me to that angry/why me place. Isn’t dealing with breast cancer enough? Why do I have to deal with this pain too? Or, I’ve been suffering with Crohns disease so long why do I have to go through breast cancer too. Since the surgery I spend a lot of time sitting because that’s about all I can do. That’s the only time I’m comfortable. Then the fistula flares and I’m not even comfortable sitting. Arrrrggggg! I wonder if the change in my bowels caused the flare? I guess it could be from all the sitting around? Whatever the cause I’ve had enough. Of course as angry as all this makes me I am very thankful that no other crohns related problem has reared its ugly head. I just want it ALL to feel better….please!!! Speaking of sitting around, I don’t usually have the TV on during the day and let me tell you I’m not missing anything. I can’t believe we have all these channels and I still can’t find anything good to watch. I’ve never been fond of game shows and I no longer watch soap operas. I say no longer because years ago when my kids were younger I watched a few soap operas but now I have no desire to watch them. I’m sure if I tuned in it would only take me a few days to feel like I picked up right where I left off lol. Of course with all that’s going on in my life I guess you could say I’m living my own little soap opera…Nahh. I’m also not really crazy about talk shows so unless there is a good movie on I’m more tempted to take a nap. Well actually there are all the reruns of old shows. I do like Everybody Loves Raymond. I could watch that all day. I’m starting to get my appetite back but I don’t have any cravings. It would be nice to crave something I would really enjoy eating. The one thing I always crave and always look forward to is a Starbucks Chai Latte. My sister and sister in law have been bringing me those as often as they can…yum. Well since there is not a Chai Latte on the way that nap is sounding pretty good.

Love, Laugh, and Always know where the nearest bathroom is
For updates on my Breast Cancer journey go to:
http://yourboobsoryourlife.blogspot.com/

Check That

Did I really say that I was happy to be only going to the bathroom once or twice a day? Did I really think what was happening was normal? Well if that was normal you can have it. I don’t know maybe my intestines just don’t remember what normal is like. Maybe after so many years my intestines just can’t handle being normal anymore. Maybe this just wasn’t really normal. Whatever it quickly made me very unhappy. It got to the point where I always felt like I had to go and so I would climb the stairs and try to go and NOTHING. Or I would go sit for 20 minutes and all I got out was this teeny tiny poop…”that’s it, that’s all? You felt like the rock of Gibraltar”. I got so tired of pushing out a little nothing that felt like a lot of something. If that is normal I don’t want any part of it. I don’t really think I can call it constipation. I don’t think going once or twice a day falls under the constipated heading. How do people who don’t go for days do it? I think it would kill me. I would just die right there on the toilet in the middle of the drop. (Not how I want to go out, not how I want to be remembered…poor girl she just pooped to death) I’ve always said that if I had to choose between diarrhea and constipation I would always pick diarrhea. I have always suspected that constipation was a horrible painful way to go so to speak and now I know I was right. Well silly me what was I thinking…after all I am always right :)

The good news is I’m back to my version of normal…its not ideal but it beats being that other version of normal...

Love, Laugh, and Always know where the nearest bathroom is
…and may it be a version that you love

For an update on my Breast Cancer journey go to:
http://yourboobsoryourlife.blogspot.com/