Darn!

Well I had my 3 week post-op appointment after my swap surgery and it looks like I may have to have some touchups done. Some of the extra skin is just not falling into place and therefore I have these small but annoying bulges off to the sides below my armpits. As per Dr. Jiffy Boobs instructions I have been massaging the areas to help smooth them out. I don’t think its very noticeable to anyone when I’m clothed, unless they are really examining the shape of my boobs (and if they are they deserve the ewwww that they get). Right now when I go out I wear one of my old bras. I took the underwires out of them (they are a no no). The bra hides the bulges and gives me a more natural shape. Yes that’s right my “old” bras!!! Even though I wanted to downsize I seem to be about the same size??? I think I look smaller but I guess not. Maybe because they aren’t saggy and they are up higher that makes them look smaller. I don’t know but I can tell you one thing… Ya know how your bra straps usually dig into your shoulders…well now that the bra isn’t really holding them up my straps keep falling off my shoulder.

I’ve been exercising and my arms are getting stronger and I’m getting my range of motion back. It still always hurts more on the right side and my left side is definitely stronger. I’m not exhausted all the time either which is wonderful. I still overdo it sometimes but it is getting easier and easier to do more things.

I’m still having lots and lots of hot flashes. It’s been very cold here which doesn’t seem to stop baseball coaches from playing games. So I have sat at 5 games so far in layers and layers of shirts, sweatshirts, and jackets and surprisingly enough I don’t have the hot flashes when I’m that cold. At one game I did but it felt good (for once). It warmed me up for a few minutes :) My head gets very cold. I have to wear a skull cap and at least two hats and then I also put my hood up.

My hair is starting to grow back in and it seems to be coming in straight and soft. Not course like everyone said it would. The best news is that it is coming back in dark…Yeah. Especially on the sides. I see gray on the top but right now it doesn’t look like much more gray than I had before and of course as soon as I can I will be dyeing it!

I go back to Jiffy Boob in early May so if I have to have more surgery it will be after that. I need to have my 6 month follow up with the surgeon in April but (if I can) I might try to schedule it the same day as Jiffy Boob.

More baseball today and right now it is 29 degrees…buuuuurrrrrr. Send me warm thoughts.

Xoxo

Swap!

Exchange, change, trade, switch, substitute….

If you haven’t guessed already I had my swap surgery about 2 weeks ago. It went very well. I was originally supposed to stay overnight but I was allowed to come home the same day :) It was a much easier surgery and no drains!!! I never even asked the doctor if I would have drains, I just assumed that I would. I was very happy to be wrong. Like I said it went very well. I wasn’t even that uncomfortable when I got home. Of course I was taking pain pills! I could definitely tell the expanders were gone. The implants are much more comfortable, softer. I was required to wear the very attractive and oh so uncomfortable compression bra yippie! I was told to leave it intact until my follow up appointment in one week :( This was disappointing…I wanted to see how they looked sooooooooo after a few days I peeked hee hee. I just kinda pulled different areas of the bra away from the boobs. I couldn’t really see that much but I could see that the cleavage was much nicer (not as wide). I was disappointed to see there was still some extra skin on each side. Hubby seemed to think it was just swelling. I went for my follow up and got to take the bra off. When I told him that I hadn’t really seen them yet he asked why. I told him that the discharge nurse said not to take the bra off. He said well they are yours you are allowed to look at them! Hahaha! Upon examination there was still swelling but there also is some extra skin. Dr. Jiffy Boob told me I need to massage it every day. I did some research and read that after about six weeks everything should fall into place so to speak. I’ve already noticed improvement since last week. I have to do my stretching exercises again. I’ve lost some range of motion. He gave me the green light to use my 3 lb weights while walking on the treadmill. I’m so glad to be able to exercise again. I’m tired of being a couch potato. I’ve got to get these arms into shape for the tank top summer coming up. What am I saying…I’m already wearing tank tops. I’ve started taking the tamoxifen and I am having hot hot hot flashes (I’m having one right now). I don’t know how I’m going to get through all the baseball games. I go back to see Dr. Jiffy Boob next week. Hopefully he will be happy with my settling process. I hope everything falls into place…I don’t want to have more surgery…but I will if I have to. I’ve gone through a lot for these Ta Ta’s. I want them to look their best.

Speaking of baseball, B has his first scrimmage game today on the high schools brand new turf field. I am so excited but I know I’m going to have to dress in layers. The high today is 41 and it is always very windy at the field. I have to dress warm but when I have hot flashes it will be awful. I’ll be peeling layers off and then putting them back on only to peel them off again. I know one thing for sure, I won’t be wearing my wig. I don’t want it to blow off :) Hats are the plan for baseball games. J went on his spring baseball trip to FL. The team did very well, 6-2. He has a double header today (away). His first home game is Friday. I’m looking forward to going to that.

My hair is starting to grow back. It is still very fine like peach fuzz. So far it is still dark Yeah! So many people have told me that their hair came back all gray. I already had some gray hair so I know that will be back and I did dye it and will dye it again as soon as I have too!!! The hair on my legs is also coming back. I have to shave about once a week. So far no armpit hair!!! I wouldn’t mind if that didn’t come back!

Well I’m going to relax before the game….GO TEAM(s)
xoxo

Adios Chemo…Hello Boobies!

Well hello everyone. Its been a while since I’ve posted and a lot is happening. I had my last chemo on Feb. 8th and I’m happy to report that it went well just like the one before. I can’t tell you how good it feels to know that I don’t have to have anymore. With the first three chemos the side effects seemed so much worse because all I could think about was how I can’t do this again. After this last one I felt like I could deal with the side effects better because I knew that I wouldn’t have to do it again. Right now all the major side effects are gone. I am just left with exhaustion and very weak muscles. My last blood work was ok except for low iron. I go back to see the oncologist in April so if I’m not back to normal levels she will probably want me to have an iron infusion again. I am supposed to start the Tamoxifen next week. I’ve already been having hot flashes since the chemo and one of the side effects of Tamoxifen is hot flashes. I think its going to be a long summer. I am hoping to start easing back into my walking and exercising routine this week. I had a jiffy boob appointment today and had my 7th and final fill. I will have my swap (expanders for implants) surgery next Wednesday March 2nd. I can’t believe its time already. It will be so nice to get these expanders out. I’m told that my hair should start growing back around a month after the last chemo which will be next week. I was mostly wearing hats around the house but now I’ve mastered tying a scarf so I’ve been wearing them a lot. I wear the wig when I go out and everyone who doesn’t know about the chemo can’t even tell I’m wearing a wig. Everyone who does know is amazed how good the wig looks. I’m glad I went with the more expensive one because not only does it look nice it is comfortable. Well I’m starting to get uncomfortable from the jiffy boob filling so I’m going to relax now and maybe take a nap :) I will let you know how the swap surgery goes and how my new boobs look Yippie!

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

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

I don’t know when I’ve felt so popular!

Take a look at my week ahead:
Saturday – Wig consultation.
Monday – 1st Chemo (Today)
Tuesday – Dr. Jiffy Boob
Thursday – Consult w the surgeon who is putting in my chemo port
Friday – Chemo port outpatient surgery
Friday night - Highlight of my week *drum roll please* Christmas Movie night with us girls :)YAY

There is something wrong with this picture tho. I have to drag myself out to all these doctors and places. Wouldn’t it be easier for them to all come to me? I could just sit in a nice comfy chair and yell NEXT…see how they like sitting in a waiting room waiting for me bahhhahahaha. No Sweetpea there is no Santa Claus who will bring doctors to you. Even if there were they would just clog up your chimney and there would be all kinds of nasty needles and shiny torture tools clanking onto the hearth.

Well this past week wasn’t real great. I had my first of two iron infusions on Monday. It went well and wasn’t as bad as I thought it would be. They set me up in a nice recliner and started me on an IV drip. Then the nurse came over and slowly pushed the Iron right into the vein. It just felt cold. I hung around for about 10 minutes to make sure there were no adverse reactions and I was on my way. So what does a girl do after an Iron infusion??? Shop! My sister and I went shopping for hats for my hairless days. I found some very cute ones too. I was pretty exhausted when I got home but felt pretty good otherwise…till the next day. Double Wow muscle and joint pain…Ouch. It was the worst in my right hip and it lasted for two days and contrary to popular belief the iron did not give me a wonderful feeling of more energy. I did however start feeling better just in time for my second infusion on Thursday. The good news is so far I haven’t had the muscle or joint pain and I do have a feeling that today I may have more energy than before…but then again it is only 10:00 am…I’m still hopeful tho :)

In an effort to not be so whiny I must say that things do seem to be coming along. I’ve been doing my finger crawl exercises up the wall and I can almost get my arms all the way up. I’m really not having any pain under my left arm anymore and a lot less pain under my right arm. When I start to do too much the pain under the right arm gets worse so I STOP :) I am getting use to the expanders too. They don’t feel as strange or as uncomfortable as before. Sleeping….well let’s not go there yet! So I will blog again with you soon and let you know how all this other stuff goes.

xoxoxoxo

Good Days and Bad Ones

I had a very busy couple days this week…since we last talked I’ve had my second jiffy boob appointment. The second fill went well. He didn’t pour the saline all over me this time :) I can definitely see some puffy little boobs forming. However one is filling up higher than the other :/ I know this is normal and they will eventually match. I still can’t really feel anything but some tightness while he is filling. Fortunately my right side is numb where the port is so the needle doesn’t hurt going in. Unfortunately the left side isn’t numb and does hurt blah. After this fill there seems to be a little less skin under the arms so that is more comfortable. I still have a hard time sleeping and found that sleeping on the living room couch is the most comfortable for now.

Last week I called to make my next appointment with the oncologist (she wanted to see me a week after my PET CT) but her office said she wasn’t available till the 12th of December. She (the doctor) called me back that afternoon and said to come to her office right after my PET CT and she would squeeze me in even if they had to page her during her rounds. She said she wanted to keep a close watch over me and boy is she. I haven’t even started my chemo yet! I had my PET CT on Wed. (the 24th) which took about an hour and a half then I went to see the oncologist. I was surprised to get in quickly but I had to wait a long time because she wanted to get the results of the PET CT before I left. They didn’t have a preliminary report ready so she called and told them she wanted it read NOW. We waited for them to call back and Praise the Lord it was clear. I am so relieved.

My blood work showed that my iron is low so I have to go on Monday and Thursday for an iron infusion. I also have to have the picc-line put in ASAP. I tried to schedule that when I got home from my appointment but they were gone and closed till after the holiday. They won’t be back in the office till Monday. I called the oncologists office and they are going to call on Monday to get it set up. The plan is to get all that done next week and start the chemo on December 6th. She wrote out all my scripts which included the Flagel for the fistula, a drug for nausea, the steroid to take the day before the day of and the day after the chemo, some Ativan to help me relax, and a cranial prosthesis aka wig :/ So that was a very very long day and by the time I got home I was so exhausted and in a good bit of pain. This upset me a lot because it was my babies 18th birthday and I was not able to celebrate it at all. I was curled up in a ball on my couch and the more I thought about it the more upset I got. If all that wasn’t bad enough I started to cry and hoped that B didn’t hear me but he did. He sat and hugged me for a while and that helped a lot but I still felt so bad that I couldn’t celebrate and on top of that I was sitting there crying. Hubby did go get him a cake and we sort of sang (he didn’t really want us to) and then we had cake. That horrible day was followed by Thanksgiving. J was home from school and I felt better but not great. Wonderful hubsie cooked the entire dinner (thankfully he is a good cook ;) and it was wonderful. Then the four of us watched some movies including Elf (one of my favorite Christmas movies). It was a wonderful day! I know I will continue to have good days and bad days but no matter what type of day I am also counting my blessings!!!

And now I’ve started my Christmas shopping….on-line of course! Oh and the Pre-lit Christmas tree is up…now I just need to get it decorated…any volunteers :)

Trip to Jiffy Boob (and other firsts)

I had my first outing (that didn’t involve a doctor) on Sunday. I have been having a lot of trouble sleeping because I’m just not able to get comfortable. I am a side sleeper but it is not comfortable to sleep on my side and sleeping on my stomach is out of the question. I hate sleeping flat on my back so we went shopping for a wedge for the bed. I also got a good electric razor. With fewer lymph nodes I don’t want to risk cutting myself with a straight razor. After that I went in search of some flat slip on shoes. In order to be comfortable when I go out I’ve been wearing long button down shirts with leggings but I didn’t really have a nice pair of flats that look nice with them. While I was at the shoe store I not only found a nice pair of flats I also found two pairs of cute boots (like ughs). A black pair that is mid calf and a tan pair that goes just above the ankle. I bought them both :) hee hee. Sunday night I tried the wedge with a pillow but that hurt my neck. So I tried without the pillow but that hurt my neck also. I got my wrap around neck pillow (for traveling) and that worked great. I finally got a good night’s sleep.

I had my first jiffy boob appointment Tuesday. I was kind of nervous not knowing what to expect and also excited to take the first step toward my new perky boobs. The nurse came in first to explain the process and to mark the spot where the port is. She used a Magna-Finder to locate the magnetic port and marked it with an x. She used a topical anesthetic to numb the area. After about 10 minutes the Dr. came in and explained that it might feel cold and or a tight feeling. If it gets uncomfortable let him know. He used a needle to enter the port on the right (I didn’t even feel the needle go in) and with a long tube and large syringe he started injecting the saline. I felt this very cold sensation. I told him wow that is cold, it feels like you are pouring it all over me. He looked down and said “Oh I am…well that’s never happened before…the connecting piece at the syringe was loose”. Lol After he fixed that he injected the saline. It seemed like he put a lot in before it started to feel tight. He did the left side next. I did feel the needle pinch on this side. After he was done I could see a puffy area on both sides but mostly on the left. It just felt a little strange but not painful at all. I made an appointment to return in two weeks. I am still not allowed to use deodorant arrrrrrgggg. I am allowed to shave my armpits tho. YAY!!! I went home and had some lunch then took a short nap. When I woke up it was starting to hurt a little bit, like how a pulled muscle feels. So I took me a pain pill even though it was mild…since I am no longer one of those people who toughs it out. I am not fond of pain so why have it :). It still feels a bit sore today but not too bad.

I have been doing my exercises and I am starting to get more range of motion in my arms. I can push with my arms now to get out of the recliner and can almost get my hands to the back of my head to do a ponytail. I’ve been wearing my hair down the past few days to give my hubby a break. Oh look Sense and Sensibility is on…I think I’ll watch it (for like the 50th time :)

Crohns Disease update:
http://crohnsliveswithme.blogspot.com/