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

Friday was Fabulous! Monday was Horrible!

Guess what I got on my Fabulous Friday

My free sample of rice cakes…Three…3…yes three different kinds of Quaker Gluten Free Rice Cakes. Lightly salted, caramel corn and apple cinnamon. I’ve tried the apple cinnamon already and I love them. At first I was thinking I’m sure these are ok but I bet I’m going to need to spread something on them to give them a little boast but what??? Nope they are very very good all by themselves.

Saturday was very rainy but relaxing. Sunday was sunny and warm and we spent the day doing more yard work and vacuuming the pool. That may sound like work but it really feels good to stand by the pool in the warm sun and guide the vacuum around. Yes I know the vacuum should go around on its own but it always goes in the same pattern and misses spots or gets stuck somewhere or clogged.

Well thank goodness for fabulous Friday and relaxing Saturday and Sunday because Monday….yeah Monday was just plain horrible! CT Scan horrible, contrast drinking injecting gagging horrible.

Wake up…No food for you.

Arrive at hospital…wait…fill out forms…wait…register…wait…get forms back…wait…get IV started

Drink 3 bottles of contrast similar to this (my bottles were bigger about 32oz each I think blah)



Gag, gag, gag, gag, almost throw up, squeeze hubs fingers off, gag, gag, tantrum, gag, gag, almost throw up, beg hubs to drink some for me but even my most pathetic face can’t convince him (can’t say I blame him), gag, gag, must find bathroom (over about 45 min.) (vow [like I always do during this test] that I will NEVER have this test again)

Wait…(about 25 min)

Climb onto machine similar to this



Scaned

Injected with contrast similar to this



Scaned again

IV removed

All done

Must find bathroom

Home sweet home…eat…bed…nauseous the rest of the day…I hate Crohns

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

Day 3 with no nausea!

Welcome to day three with no nausea!!! I can’t tell you how wonderful it feels to NOT feel like I’m going to puke all day and NOT feel suddenly dizzy…especially when I’m driving somewhere. Maybe I’ll feel more comfortable driving more than a mile away from my house now. I wanted to celebrate and paint the town red but I settled for painting my nails red. Do you like???





Big Apple Red BY OPI





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

Nausea Be Gone and stay gone!!!

Well I hope everyone who is a mom had a wonderful Mothers Day yesterday…I know I did. Where else would a baseball mom spend mother’s day but on a baseball field? Yes J had a double header and he even pitched so it was a great day for me. After the games we went out for a nice dinner with another baseball mom and her family.

Nausea:
I have been feeling a bit better these past couple days. Less nausea YAY! I had been experiencing some other symptoms that I didn’t share with you. Mainly because I just didn’t want to think about it anymore then I had too. This horrible nausea has been accompanied by some occasional light headed episodes. One night about 3 weeks ago I had a major episode where I got so nauseous and light headed I wasn’t sure if I would throw up or pass out or both. I made it to my bed but my hubby said I was so pale. He went and got his blood pressure cuff and took my blood pressure. It was extremely low. The nausea and light headed symptoms passed and my pressure (which is always low to begin with) went back to normal. A few days later I mentioned this to my sister-in-law and she was very concerned and told me if it happened again I was to go right to the ER. She also insisted that I monitor my blood pressure in the morning and at bedtime. I did this and it was always normal. I continued to have the bad nausea in the mornings and occasional moments of light headedness (mild compared to that one night). R came over last week and gave me my Cimzia shots and checked my blood pressure. I showed her the results of my monitoring and she told me to start checking it when I had the mild episodes. Shortly after she left I had a mild episode and….you guessed it, very low. Must check with my doctor. R discussed this with her co-workers (doctors office) the next day and they looked at the new vitamins (B12, D, digestive enzymes) I started taking about two months ago (which is when the nausea got really bad). They recommended I stop taking the digestive enzyme. So I stopped the next day. The nausea has slowly gotten better and today for the first time in a long time I have not had any nausea yet and I haven’t felt light headed or a drop in blood pressure since??? I will still mention this to my doctor next week when I go for my blood work results but I hope this is the end of these symptoms. Now to get rid of the fatigue (which has improved since the B12 and D) and headaches and I’ll be a happy camper!!! Thankfully the joint pain is still gone with only mild pain here and there.

Baseball:
Well Spring Baseball Season is over for both J and B. Here is the good the bad and the ugly of the 2010 College and High School Season:
First of all Congratulations to CC for winning the AAAA Section 4 Title and you’re going to the playoffs…..YAY!!! KEEP WINNING! We have many friends on this team.

Section 4: (Section Record) (Overall Record)
#-PH Indians : (9-3) (12-5)
#-PCC Vikings : (9-3) (11-5)
*-P Mustangs : (8-4) (14-5)
x-G Gators : (7-5) (11-7)
x-FR Panthers : (5-7) (8-8-1)
x-WH Wolverines : (3-9) (5-12)
x-MK Tigers : (1-11) (3-14)

There we are in second to last place :(
B fought a hamstring injury all year and his cyst is back…more surgery in August :( He did make the Baseball Statistical Leaders:

Baseball Statistical Leaders
Friday, May 07, 2010
PPG
________________________________________
THROUGH SUNDAY, MAY 2, 2010
BATTING
(Minimum 32 at-bats)

Name, School AB H Avg
BT, WHHS 33 17 .515

RBIs
18 -- BT, WHHS.

J’s team qualified for the Quarter Finals but unfortunately lost both games yesterday. I did get to see J pitch one last time as a sophomore so I was happy about that. Most of you know I always sit behind third base (sometimes behind first) and take pictures but at J’s games I usually only take pictures of the game when he is pitching and he closed the first game. I still hang out at third base but my presence was requested in the bleachers for the second game because there was a very rude loud obnoxious parent from the other team annoying my favorite LRC parents. Now those of you who have seen me in action can sympathize with the poor man. While my cheers are never rude I can be very loud and annoying when I want to be. Let me just say he only lasted for 2 innings….I lasted all 7 hahaha.

J:
Category Leaders


________________________________________


The Automated ScoreBook
Pitching Leaders for LRC (as of May 10, 2010)
(All games)

Hitting minimums - 1 Games
Pitching minimums - 1 Games

Opposing bat avg
----------------
Cory.......... .154
Jeremy....... .200
JJ.......... .206
Anthony..... .227
Adam......... .236


Saves
-----
George........ 4
James...... 1
JJ.......... 1

Innings pitched
---------------
Addison.... 56.2
James...... 46.1
Adam......... 41.2
Reed...... 40.0
JJ.......... 17.1

Games finished
--------------
George........ 8
JJ.......... 6
Justin....... 6
Reed...... 4
2 tied at........... 2

Games in relief
---------------
Justin....... 10
George........ 9
JJ.......... 8
Reed...... 5
2 tied at........... 4

Hit batters
-----------
Adam......... 8
Reed...... 7
Addison.... 6
JJ.......... 4
James...... 4

Batters SO out looking
----------------------
Addison.... 16
Adam......... 8
James...... 7
JJ.......... 6
George........ 5

Sac bunts allowed
-----------------
JJ.......... 3
Addison.... 3
James...... 2
Adam......... 1


Home runs allowed
-----------------
Nate......... 0
Cory.......... 0
Justin...... 0
JJ.......... 0
John........ 0

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

Gee Thanks Crohns

So you all know that I have been having a lot of nausea and fatigue yadda yadda yadda, and baseball season is always a difficult time for me. For me Crohns and baseball just doesn’t go well together. As I’ve said before I don’t do porta johns unless it’s an extreme emergency. So I avoid extreme emergencies by not eating. As you can imagine this makes even a good day turn bad very quickly. So I’ve been struggling through the season going to all of B’s games and most of J’s home games. This week however I was just worn out and feeling extra nauseous and fatigued on Tuesday so I decided not to go to B’s game. Now my kids are wonderful and they completely understand if I can’t make it to a game. As a matter of fact when they know that I’m not feeling well they encourage me to stay home because they want me to feel better more than anything. It’s me being stubborn and not wanting/letting Crohns interfere with any part of my kids lives. But I do know my limits (most of the time) so I stayed home and it felt good to stay home until I hear “B hit a homerun” his third one this year and I missed it. I missed it because of you Crohns. You are such a pain in the butt Crohns (pun intended). All I can say is it’s a good thing I got to see the first two. I am very thankful for that!!!

J’s team is doing very well! They qualified for the Quarter Finals that will be played on Sat. at their home field. If they win they move on. GO TEAM!

I got my Cimzia shots last night and I hope its kicking your butt Crohns. Blood work today, ugh more needles. Hoping she can get it on the first stick this time. I’ll be sure to let you know. So until then

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

May Already!!!

Is it really May already!!! Of course I’m looking forward to summer but it will be over in a blink. I hope I can get rid of this nausea and get my energy back before June and before the summer baseball tournaments start. It’s getting very hard to get through one double header on a Saturday. J had a double header this past Saturday and I paid dearly for it on Sunday. Tournaments in the summer can consist of 2 or 3 games a day on a Fri., Sat., Sun., and Mon. I feel like the energy is slowwwwwly coming back but the nausea is driving me crazy and I had a horrible headache for three days straight last week. I will be going for my follow up blood work this week and then to the doctor on the 17th for the results. Hopefully there is some improvement and if not I hope they can come up with a plan to get me in shape by June. Especially the nausea, I really can’t take much more of that. It makes mornings very difficult. I don’t know how you pregnant women do it. I never had morning sickness during pregnancy, thankfully!

Speaking of baseball…At J’s game on Saturday I just had to snap a picture of the shoes this lady was wearing.



Who wears shoes like that to a baseball game??? I wear my beat up old tennis shoes 1. For comfort and 2. I sure don’t want to ruin my good tennis shoes let alone dressier shoes. You should have seen what she was wearing!!! I wanted to get a picture of that too but I didn’t have an opportunity to snap a picture without being obvious…darn. She looked like she was in her mid to late 50’s and she was wearing these short black shorts with a black open top tied at the waist with a tiny low cut white camisole under the black top. The black top wasn’t just open at the top to reveal a small amount of camisole…it was wide open revealing the entire front of the camisole down to her waist. Now if she were someone who didn’t really look her age and had nice skin and good posture maybe, maybe she could have pulled this off but she looked like she’s led a very hard life (most likely in some hot desert sun). But hey who am I to judge. Just promise me if you ever see me and the way I'm dressed freaks you out, just slap me....hard!!!

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

Lots of Good Stuff

Well the end of my week was somewhat uneventful compared to the three days of birthday celebrating. The good news is that my tummy has settled down and the benefits of my Gluten Free diet have kicked back in. It’s clear that when I’m having a flare even the GF can’t help me but that’s ok because it’s helping me the rest of the time.

Btw have I told you how wonderful my family is? They are so loving and supportive. They are always looking out for me. My beautiful niece K just gave me some very good GF news so I looked up the details so that I could share it with you:

Gluten-Free Bun Available at Every Eat’n Park!

We have an exciting announcement for our guests who have celiac disease: we now have a gluten-free bun available in all of our restaurants! This new rice/tapioca-based bun is similar to an Italian-style roll, and we think you’re going to love it. Unlike some other gluten-free breads, it doesn’t have a dry, crumbly texture. In fact, it’s delicious!

We’ve always done our best of cater to our guests’ various dietary needs, and the back of our menu is a great resource for anyone on a low-calorie, reduced-sodium, vegetarian, or celiac-friendly diet. However, for those with gluten allergies, this new bun opens up a whole new world of celiac-friendly possibilities at Eat’n Park.

Below is a list of our menu items that can now be enjoyed gluten-free with the substitution of the new bun:

Burgers:
Black Angus American Grill Burger
Black Angus BBQ Bacon and Cheddar Burger
Classic Black Angus Burger
Classic Black Angus Cheeseburger
Black Angus Superburger
Black Angus Mushroom and Onion Burger

Sandwiches:
Philly Steak and Cheese
Chargrilled Chicken Sandwich
Santa Fe Turkey and Bacon
Chicken and Portobella Hoagie
BLT

Breakfast Sandwiches:
All-American Scrambler
Texas-Sized Scrambler
Skinny Scrambler

Just ask your server to substitute the new bun with your next meal, and as always, be sure let him or her know if you have a gluten allergy, so that we can avoid cross-contact with gluten ingredients when preparing your meal.

On the vitamin front I am wondering if the D3 tablets are absorbing properly. Since I’ve switched from the 50,000 IU D to the D3 I have started having the morning nausea, fatigue, and headaches again. The morning nausea is the worst of these three things. I wake up feeling so sick I have no choice but to go back to bed. Blah! I am going to switch to the liquid D3 and see if that works better.

Baseball News: B is recovering from a hamstring pull and was not able to play yesterday or today. Depending on how he is feeling he may get to play Monday or Wednesday. J and his team continue to do well. His games were away today (NY to be exact) so I didn’t get to go.

While you are here please check out the new link on the right for the Take Steps For Crohns & Colitis. I am so excited to be raising money for such an important cause and to be walking this year with my family. If you are able to please walk with us, make a small donation, and/or pray for the members of our team.

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

An Update and a Special Request

I am happy to report that this week I am feeling a little better. Still exhausted but the joint pain is not as bad, I have less nausea, and I think I went an entire day without a headache. I am hoping the next three days will continue to be good ones because, are you sitting down, on Sunday I have to prep for my colonoscopy!!! Blahhhhhhh!!! So think of me in my corner sipping my clear liquids and toxic waste but try not to picture me running to the bathroom.

I am also happy to report that I (with the help of my wonderful husband) made my first loaf of gluten free cinnamon raisin bread last weekend and it is very good. I am so happy to have some bread in my life again and I am looking forward to finding/making other wonderful gluten free foods.

Now I would like to ask a favor. If you happen to have an extra $5.00 or are looking for a wonderful cause to support please consider making a donation to a fellow crohnie who is participating in the Take Steps for Crohn’s & Colitis walk this summer. You can donate online at:

http://online.ccfa.org/site/TR/Walk/Chapter-SouthwestOhio?px=1957383&pg=personal&fr_id=1797

More than 1.4 million patients across the country suffer from Crohn’s disease and ulcerative colitis. Beyond raising money for research, Take Steps brings together the community in a fun and energetic atmosphere. Participants are encouraged to make noise and be heard—raising awareness of these little known diseases.
If you are able to please consider supporting their efforts by making a tax deductible contribution.

Your support of even $5.00, will help fund important research and raise awareness of diseases that affect millions of people.

Another way you can help spread awareness:

If you have a twitter account on 3/14 please use #Crohns at the end of all your tweets in hopes of a trending topic to spread awareness.

Thank you so much

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