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

Lets Make a Deal

I don’t like to complain so much but come on…. Why can’t I just have one disease at a time or at least only one active at a time. I’ve accepted that I have Crohns disease…after all I’ve been dealing with it for more than 20 years. I’ve almost accepted having breast cancer after all its only been three months (wow it has only been three months…it feels more like three years). So crohns (looking down at my belly), yes I’m talking to you. Could you please just back off till I get through the reconstruction and the chemo. Could you just sit back and let me put all my energy into growing new boobs and killing any stray cancer cells. Wouldn’t you rather hide from me while I’m bald and nauseous. You don’t need to keep reminding me that you were here first. You don’t need to be jealous…I will always like you better than cancer. You can relax and enjoy some time off. You’ve worked so hard all these years so how about taking a well deserved vacation. Better yet how about joining forces with me and fighting this cancer together. Instead of chewing on my intestine go gobble up any bad cells that are hanging around. Ya know if you would quit flaring my fistula I could have more energy to get through the cancer treatment. Just so you know the sooner I get through the cancer treatment the sooner it can be just you and me again. You could attack the cancer instead of me. You could be the crohninator, my very own Arnold. Tell the cancer “Hasta la vista, baby!” You could be Batman and I could be Robin. Come on, Crohns, to the Bat Cave! There's not a moment to lose! You can be Mario and I’ll be Luigi: Strap your belt on, kid. We're going in! Come on what do ya say??? Don’t make me come down there and kick your, well I guess it would be my ass!…PLEASE…I’m begging now!

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

Not Your Average Patient

I went to see the oncologist Friday. She was very nice and I liked her very much. She is also very thorough; she spent a lot of time with me. After going through my entire medical history and examining me including abdomen and fistula (joy joy) she explained the treatment. Since I am not your average patient she will be watching me very closely. She is very concerned about how the treatment will affect my crohns and the fistula. She is going to work with my GI through the treatment. We may have to change my meds a bit. Since the chemo can cause inflammation she wants me to take steroids the day before, the day of, and the day after the treatments which will be every three weeks for 3 to 4 months. The fistula will be a challenge because in reality it is a chronic infection so we have to be very careful that it doesn’t flare and get worse. She wants me to be on an antibiotic during the treatment. She also thinks that she will need to watch my blood count and iron count even more than most patients due to the crohns and fistula. She wants me back on the B12 and depending on the results of my blood work possibly iron. I will probably have my treatments on Tuesdays because that is the only day of the week that she has office hours at the hospital that is closest to me. This way if there is a problem or I need to see her I can do it on the same day. I will probably start the treatments in two weeks. We have to get insurance approval and she wants me to have a PET scan first. Everything is going very quickly which is fine. I want to be feeling good by the spring baseball season. J and B are doing their winter workouts and conditioning and B is still in search of the right college to attend after graduation. Since I will be bald during the baseball season J’s coach gave me a redhawks knit cap to wear to the games. It will be perfect.

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

New Med = Less Bathroom (so far)

I went to see my GI the other day and we discussed the Pentasa I’ve been taking for longer than I can remember. 2 pills 4 times per day. I was out of refills and needed a new script called in. He told me if I wanted I could take 4 pills 2 times per day or he could switch me to a different drug (Asacol ~ mesalamine ) that was 2 pills 2 times per day. I said sure I’ll try the Asacol. About a week later, after my insurance company approved it (don’t you just love insurance companies) I got it filled and started taking it. I’ve been taking it for about a week now and it is helping better then the Pentasa. I don’t have to go to the bathroom as often woo hoo. As a matter of fact it is 1:42 and I haven’t gone yet. This is like the closest I’ve ever gotten to constipation lol. Going less should be very helpful during mastectomy post-op. My surgery is scheduled for October 22nd which is creeping up on me quickly. I’ve found some very informative blogs that have given me lots of ideas of what to take with me to the hospital and what to expect after the surgery. I’ve started packing a bag already so that I don’t forget anything that I read about. The bad news is my fistula has been acting up. I got a script for Cipro so I hope that gets it under control FAST. I don’t want anything to postpone my surgery. I just want to get this over with. I’m also getting back on track with my gluten free diet. All the junk food is gone. B had some friends over and the gobbled it all up. I want to eat as healthy as I can leading up to the surgery (something I should have been doing all along). Since I’ve been off the vitamin D3 my joints have been hurting more and the past few days have been really bad. This could also be because of the change in the weather. I hope I can get back on the D3 quickly after the surgery is over. Well I will try to update you a few times between now and my surgery. Until then

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

Oh My Gosh…..

Oh My Gosh…..I’m finally done with the Media Guide (takes a bow)! Its on a disk and I’m taking it to the printer today and NO ONE can stop me!!! Not players with late ads…Hello this fundraiser started Feb. 2nd and all ads were due Feb. 23rd and poor little johnie is still giving me ads on March 24th aaarrrrrrrrrrrrrrggggggggggg. Not Coaches who can’t seem to find the time to give the information I’ve asked 50 times for. Sorry it’s not going in. Why? Why you ask? Because of the yellers. Because of the yellers I decided that I would do it their way. Because for the previous two baseball seasons I have been the nice one waiting and waiting for players and parents and coaches to cooperate with me and give me what I need. I didn’t want to publish the media guide without yours and yours and your sons picture or profile or ads. I didn’t want to leave out the New Coaches profile or the returning Coaches updated information. I wanted to have a good team picture with all players not just half. So for the past two seasons I have put up with the yelling and moaning and groaning of people who love love love to complain. The people who just can’t keep their mouth shut - until you ask for volunteers. You know the ones. The ones who yell the loudest and do the least. They insist that it be done and to the printer by today no matter what is missing. Well you yellers have gotten your wish and the media guide will go to the printer today and guess what….there are names missing and pictures missing and profiles missing but hey that’s ok right. Right, until you realize that something about your son has been left out. So now I’ll get yelled at for that. It’s a no win situation but I’m ready for you. My answer to you is “Oh your son isn’t in there, oh that information isn’t correct or up to date….Sorry they didn’t meet your deadline”.

Oh My Gosh…..Someone please explain to me why….WHY….just when you think things might be improving (Crohns) something else gets worse. Just when you think one area is healing (Crohns) something else flares. Just when you think one medicine is helping (Crohns) another one fails or has an awful side effect. Up down, up down! Crohns is such a rollercoaster and I want to get off. The latest up is that I think being on the vitamin D and B12 (for only a week and a half) is helping. I wouldn’t go as far as saying I have my energy back but I’m not so exhausted that I feel like I’m going to pass out or throw up. I’m also having fewer headaches. Now here comes the butt (pun intended:). The latest down. My abscess/fistula which hasn’t bothered me in a long time (and I was just saying to someone that is has been great, no problems, the setons keep it under control. I swear that beast in my gut has ears). Well last Friday it got real bad. Pain like I haven’t had in a long time and closed…I usually have a little bit of drainage…no drainage at all. Of course being Friday evening I can’t call the doctor but I had some Cipro in the house so I started taking that. Fortunately Saturday it started to drain a lot. The pain continued till about Monday and has been off and on since. Btw, if you are wondering, its on today.

Oh My Gosh….B had his first scrimmage game a few days ago. I went, I saw, I took lots of pictures. He played well. I really enjoyed seeing him play again. He has been mentioned in a few local newspaper and online articles in the past few days. I will do a separate blog post with some of those highlights. I am so proud of him. J also had another game the other day. I wasn’t able to go because I had to get the blasted media guide done. Of course since I wasn’t there he pitched. They won! Woop! He closed the game. Three up three down. Awesome!!! I am so proud of him too. (see some pics from B's game below)

Again, thank you for your prayers. Please continue to pray for my family. My father in law continues to decline a little bit each day. They are saying that he may only live a few more days but I know from experience it can be a few more hours, days, or weeks. We know that it is in God’s hands and trust in his plans for us all. The nurses continue to keep him comfortable. He rarely opens his eyes and only takes a few bites of soft food a day. He sometimes responds to our voices and attempts to communicate but is not able to. Your thoughts and prayers are a blessing to us and very much appreciated.
Well that’s all for now. So until next time…..

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