Hello February

O Lord, my God,

I cried out to You,

and You healed me.

--Psalm 30:3

This month (the 8th) will be one year since my last chemo! PTL I'm feeling great (except for still being tired all the time but I think that has more to do with the Crohns) I do still feel like I have chemo brain. Some days I feel like that is getting worse instead of better ugh. I have to search for some brain boosting ideas.

I've been doing good with my healthier diet. I've lost a few pounds and I haven't even started the exercising yet. I have to start that :/ I've been having too much fun with baby G and I've been working on getting pictures and art work hung. I've found some great decorating and craft blogs. I'll be posting some pictures on my other blog if your interested. Another goal this year is to spend less. So I'm not going to buy anything that I can make myself and if its not on sale or I don't have a coupon its not for me :) Wish me luck!

xoxo

Fluids, Fluids, Fluids, or Not???

I really should not wait so long between posts because I can’t remember everything that happened??? Well I’ll give it my best shot. I had my second chemo on the 28th (the lower dose). While it did go better then the first one (I at least didn’t end up in the hospital) I basically had the same symptoms within the same time frame. First the increase in diarrhea, the awful aches and pains, elevated temp., blood pressure, and heart rate. This time I took pain pills to ease the pain. The one improvement was that my fistula didn’t flare and I didn’t have nearly as much bleeding with the diarrhea. The day of chemo they gave me extra fluids and had me come in the next two days for more fluids. It was a holiday weekend so I went 3 days without fluids. Unfortunately I was not able to enjoy New Years Eve. That was one of my worst days and I was in bed by 10:30. We are going to have a redo sometime soon :) Because I continued to have severe diarrhea I did what they told me to do. I called and came in for more fluids that Monday after the New Year. The nurse told me if I continued to have severe diarrhea to call in the morning and come in again. I did so I called and came in. The one male nurse (I’ll call him nurse jackwagon), who doesn’t usually have me as a patient, came over and said “We all talked this morning and are wondering what to do with you?” (Really!) He told me that I can’t just call and come in for fluids when I’m not on the schedule. (You mean what they told me to do. Meanwhile the room is practically empty so I’m pretty sure I wasn’t jamming up their schedule.) Then he proceeds to tell me that I don’t look dehydrated and if we want the diarrhea to stop we shouldn’t be pumping in more fluids. I said that I thought the purpose was to prevent dehydration so that I don’t end up back in the hospital and that when I was in the hospital the diarrhea improved while I was on fluids. He then tells me (and this is very funny because a nurse should have some idea of what crohns disease is and the symptoms) that I need to do things at home to stay hydrated, that I need to eat foods that bind! I almost laughed right in his face. I said that I have crohns disease and there are no foods that bind me. He said I need to drink lots of fluids. I told him that I do. I drink lots and lots of water in addition to juice and milk. He asked if I drank coffee and I said no I might have 1 cup of tea a day. He said well you shouldn’t drink tea because it is a diuretic, or anything with caffeine. I told him I never drink anything with caffeine. He asked me how many times I went the day before I said 16 (you jackwagon). He was determined to convince me that my diarrhea was my fault. He said well if you are going to come in for fluids we need to put you on a schedule, how about Mon. Wed. Fri. I said fine. This lovely conversation was on a Tuesday so he said not to come in tomorrow just wait till Friday and then next week they will put me on for Mon. Wed. Fri. I told nurse jackwagon that since I have an appointment with Dr. A (the oncologist) on Tuesday I won’t come on Monday. I’ll just ask her on Tuesday what exactly I should do. Before I left the other nurse told me if I still had severe diarrhea to call and come in…Really??? So like a good little patient I went back on Friday and yes my diarrhea was still severe. Nurse Jackwagon didn’t come anywhere near me. When I was done the nurse said if you continue to have severe diarrhea to call, they have a doctor on call all weekend. Nurse Jackwagon really made me feel like I was being ridiculous and that I was a nuisance. At this point I am determined to never call again no matter what is happening.

I went on Tuesday to see the oncologist and she said my blood work has been good. She asked about the diarrhea and I told her exactly how many times a day I was going, when it starts, and how long it lasts (I’ve been keeping track). I told her I was confused about what to do as far as the fluids go, that I was doing what I was told and calling to go in when the diarrhea was severe, but the nurse said I shouldn’t be doing that and needed to be on a schedule. She looked everything over and she said based on when the diarrhea starts she would have the nurses put me on the schedule for the Mon. Wed. Fri. Mon. the week after my chemo. She also said I’m going to write in here that you can call if the diarrhea is severe and you need to come in for more. (Yeah right I’ll call and then be treated like I’m overreacting, no thank you) She said she wanted to push forward and do two more treatments like planned. She also wants to see me again in two weeks to make sure I’m doing ok. I can’t wait till this is over.

Oh the other funny thing is that in the middle of all this I called my GI doctor to see if I could take anything to help with the diarrhea. He prescribed Lomotil and told me if it didn’t help to call and they would arrange for me to come in and get fluids!!!

The good news is that just like the last time I am at the point where my poo is back to normal and I am feeling better (except for being completely exhausted). My next chemo is on the 18th and then only one more after that. I CAN DO THIS!!!
Later that same day that I saw the oncologist I went to Jiffy Boob for a fill up. He is very happy with my progress. I’m amazed at how big my new boobs are getting (I think I’m still less than half the size I use to be but I was quite big before :). I actually have some nice cleavage going on!!!

I registered for a class through the American Cancer Society. It’s called Look Good Feel Better. It’s a class to teach you how to care for your skin and apply makeup while you are going through chemo. I’m looking forward to that. Just about all the hair on my head is gone but I still have my eyebrows. The area where I always plucked is not growing anymore hair. I have lost some eyelashes but I still have enough that most people wouldn’t notice. I have no hair under my arms Yeah and the hair on my legs has stopped growing so I don’t have to shave them either Yeah!!! I’ll let you know how the class goes.

xoxo

The Post I Forgot to Post!?!

I started this post after Christmas and then forgot to post it (chemo brain) so here it is :)
Once again this is on both blogs :p

Being home and hydrated made me feel very good. I haven’t had much energy but I also haven’t had much pain and I’m back to my normal for me poo routine. The fistula has also been behaving.

My hair started falling out (2 weeks after 1st chemo) so we had a little buzz cut event. My boys already have buzz cuts and B and J’s friend Jeff needed a trim so J buzzed Jeff first and then B. Then off with my hair :( but I have to say it doesn’t look that bad. J already looks a lot like me and now we look like twins hahaha. We took pictures but I don’t think I’ll post those. I went to pick up my wig the next day and it is wonderful. The color and style are just like my real hair. People will never guess it is a wig (if they don’t already know that is)

I was very disappointed to miss my beautiful niece CSD’s wedding. I just wasn’t feeling well enough and my doctors don’t want me to be around any large crowds to prevent being exposed to germs. Thankfully I have the most wonderful family in the world. My niece CRSA and my sister CAE sent me pictures during the ceremony and reception….THEN my amazing, beautiful, wonderful niece and brand new bride CSD, brand new hubby N, and her Mom (sister CAE) came to my house on Christmas Eve to reenact the wedding reception. With the wedding dress on, Mother of the bride dress on, bouquets in hand; they came down my staircase escorted by my son (in shorts and a tee-shirt hahaha.) I cried! I also dressed for the occasion and wore my wig. They brought a center piece, snacks, cookies, and cake. We took lots and lots of pictures, and then we ate, and the bride and groom cut the cake. My beautiful niece KRS and brother RJS and sister in law RJS were also in attendance. I can’t even find the words to express how wonderful and special this day was for me. I love you all so much xoxo.

I finished my online Christmas shopping but everyone got a lot less than normal. They weren’t disappointed tho because they are wonderful. Hubby wrapped everything for me on Christmas Eve evening…nothing like waiting till the last min. (of course I do that just about every Christmas ;) This year we did a 2 fishes Christmas Eve Dinner (as opposed to the 7 fishes). Christmas morning was very nice. We opened our presents and then went to CRA’s for a wonderful Christmas morning breakfast. The rest of the day was relaxing. Hubby cooked a nice Christmas Ham dinner and we watched our boys play Wii. I use to be good at these games but apparently it’s not like riding a bicycle!

xoxoxoxoxo
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

99.9%

First let me just say that if you are reading this and you have the exact same Breast Cancer diagnosis, surgery, reconstruction, and treatment I am 99.9% sure you will not have the same experience as me. I have the unfortunate complication of having Crohns Disease and all ITS complications.

I am 99.9% sure I am going to look wicked cute in my new wig…broke but cute. Yes wigs are expensive, especially real hair ones but since I will be wearing it for a year or more I want it to last. I went for a fitting and tried on several wigs. Including a blonde one :) (I have very dark hair, almost black) Needless to say the blonde one did NOT look good!!! I would never do that anyways because I love my dark hair. The wig master has ordered my wig, it will be a similar style and color to how I wear my real locs. All the wigs arrive long and are styled at the second fitting. I go on Tuesday. I will post a pic.

I am also 99.9% sure that this past Thursday and Friday were the worst days of my life!!! I had my first chemo on Monday. The treatment itself went very well. My hubby and sister CAE were there with me. I took my pink snuggie which I started having all my loved ones sign.

a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQwQhsPNKN-M9M8X02eWS1aER33TcWhxnHY2nufyyEn1w39zP7oiY_NBWMMgloiVgk_6P0GmJmWxXIdhjIhLsm-9F9y9IE-KQn6qmVDFr9gPKezE5KCQaPNRzLJ-xb_uCFfTaRuZpPuVoL/s1600/1206001057.jpg">

We were there about 4 hours. I don’t have my port in yet so the nurse started an IV in my left arm. (Warning KAS…scroll past this picture)



I was very tired that day and the next and I had an increase in diarrhea. Then Wed. night I started to feel horrible, even more diarrhea now and the constant diarrhea seemed to flare the fistula. That night every inch of my body hurt. It was like tiny shards of glass racing through my body stabbing me. The pain and diarrhea and 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 heart rate was high and I had a slight temperature so needless to say they postponed that procedure until December 28th before my 2nd chemo. 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 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.

xoxoxoxo

Look Ma…No Drains!!!

I saw the plastic surgeon on Tuesday and to my surprise he removed both drains. I really expected to have them in for at least one more week. He said everything looked good and he will start filling me up next week. I think I shall start calling his office Jiffy Boob :) He said everything else looks good. I am allowed to start getting the incisions wet which means real showers. I’ve been very excited about that. It feels so good to let the hot water run everywhere. It still hurts under my arms where the drains went in but thankfully it did not hurt at all when he pulled them out. Unfortunately I am still not allowed to use deodorant and soap and water does not seem to do anything to get rid of the smell. So far no one is complaining and I’m sure it bothers me more than anyone; after all I can’t get away from it. I also haven’t shaved my armpits so I feel very European :/ The overall pain is significantly less. It has become a very strange feeling. I am completely numb from the shoulder blades down to mid rib cage and armpit to armpit. That area also feels very hard to the touch. I think that might be due to the expanders. Even though the area is numb it feels like I have a very tight bra across the front or a board taped to my chest. I guess you could now say I am flat as a board lol. I also have a lot of extra skin stitched back toward my armpits. This skin will be used during the expanding process. This skin is numb also and feels very strange especially when I bring my arms forward or down on it. This will be a very interesting process. I’ve looked at my chest many times since that first peek. It looks very strange and ugly to me. I’ve heard that it is very upsetting for some women to see how it looks and the reality of their breasts being gone. I really haven’t experienced those feelings, not yet anyway. When I look at my chest and my incisions I don’t just see that my breasts are gone, more importantly I see and I know that the cancer is gone. That is what is most important. That is why I chose to do it this way.

For updates on my Crohns Disease journey go to:
http://crohnsliveswithme.blogspot.com/

Love and Support

My first phone call was of course to my husband at work. That was a very hard call to make but he is so supportive and strong. He did what he does best, assure me that everything will be ok and he is always right (but don’t tell him I said that :). Then the calls to my family and in case you don’t already know it I have the most wonderful family in the world. Within twenty minutes they began arriving at my house, to be by my side, to love me, to hug me, to cry with me, and we even laughed a little because that’s what we do best. They wouldn’t be anywhere else. Already planning how they would take care of me. Getting copies of my biopsy report, making phone calls to family and friends who know exactly what the report means and who can recommend great doctors and helping me plan what to do next. Yes they are the most wonderful family in the world.

Here are the details:

Diagnosis from core biopsy:
1. Invasive Lobular Carcinoma, Intermediate Nuclear Grade
2. Lobular Carcinoma In Situ, Intermediate Nuclear Grade

Strongly positive for estrogen, strongly positive for progesterone
Negative HER-2/neu, score 1+

What to do next involved a lot of Doctors appointments and tests:
MRI Findings:
No chest wall involvement
The mass is about 2.2 cm

CT Scan:
Lungs clear. No nodules. No enlarged lymph nodes

Whole Body Bone Scan:
No evidence of bone metastases

My surgery is scheduled for October 22nd. My surgeon is wonderful and very good of course. He is very positive and so am I.

Because of my strong family history of breast cancer (mom, sister, first cousin) I am having a double mastectomy, reconstruction (Yay for perky boobs), followed by chemo, and 5 years of tamoxifen

I saw the plastic surgeon and he is wonderful as well. We went over all the options and decided on implants. Using my own tissue from my abdomen is out of the question because I have Crohns Disease and a large scar from surgery.

I was taking Cimzia for the Crohns but had to stop. I can’t be on any drugs that suppress the immune system. I am trying to stay relaxed and praying that the crohns beast will stay calm through all of this. I am usually what one might call a “worrier” and I have to admit that I cried almost nonstop through the testing and for about a week after the diagnosis but I am amazed (once I stopped crying) at how calm I’ve been. I do still have my moments but it is a calm that can only come from God. I am so blessed to have so many people praying for me.

“And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.” Philippians 4:7

“My faith is strong because I know my God is faithful, and His faithfulness is my shield”