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

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 :)

Another Fabulous Doctor: The Oncologist

I went for my first appointment with the Oncologist. I liked her very much; she is very nice, and very thorough. She spent a lot of time with me going over my medical history and explaining the treatment. She also examined me. She ordered some blood work to check many things including my blood count, iron, B12, and hormone levels. She is very concerned about how the chemo will affect my crohns disease, especially the fistula which is considered an ongoing infection. She wants me on the flagel during the treatment to try to prevent a flare. She is going to work with my GI and watch me very closely. She will give me shots to boost my blood count. She is worried that I will be more susceptible to lower blood counts. She may also tweak my crohns meds because some may not be compatible with the chemo. I have to have a PET Scan first for a baseline and to check on a spot on the sternum that the MRI showed. The Bone Scan found it to be nothing but the PET Scan will make sure. A week after that I go back to the Oncologist to get the script for the flagel and a wig and to schedule the procedure to insert a port into my chest. When all that is done (hopefully in 2 weeks) I will start the treatments. I will have a 3 hour infusion every 3 weeks for 3 to 4 months. The chemo cocktail will be a combination of Taxotere and Cytoxan. She will also give me something for nausea.

I am doing my exercises and the range of motion and strength in my arms is slowly improving. I am a little impatient about that. I feel like I should be progressing faster. I feel like everyone else would be fine and back to their normal activities by now. I’m still having good days and bad days. Some of the bad days involve my crohns which just makes everything worse. I still wear my jammies all day when I don’t have to go anywhere. I only have a few button down shirts so I save them for when I leave the house.

I mostly just have a tight feeling in my chest and I still have a lot of numb areas. I can definitely feel the expanders in my chest and they feel very strange and sometimes uncomfortable. Its really strange to feel the muscle flexing over top of them when I reach for something or even when I’m typing. The extra skin near the armpits is very uncomfortable. Some days it feels like it has moved further under my armpit (especially on my right side) and when my arm comes down on it there is some soreness. I’m glad tho that the extra skin is there, its one less thing that has to stretch. I just can’t wait for it to start being a boob again.

After my appointment on Friday we stopped at my lovely niece KAS’s house. This was the first time I went to visit someone. It was so nice to sit and visit her and her beautiful baby girl. PRS put her arms up for me to pick her up and I almost forgot and did. Its so hard not to scoop her up and give her hugs and kisses. Then Saturday we ventured to my niece CRSA’s house for my sister-in-laws birthday party. It was so nice to visit with most of my family and some friends. In about a month I hope to be dancing (or at least watching everyone else dance) at my niece CSE’s wedding.

I LOVE MY FAMILY!!!

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/

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/

But…..

When it comes to caregivers my hubby is the BEST of the best of the best! I have had many many surgeries during our married life. As a matter of fact my first major surgery was 1 year and 4 months after we got married. This wonderful man has had to do things for me that no one wants to do (even for the ones they love the most). I guarantee you most newly married men would have run away screaming and never looking back. Most men period would have run if not the first time surely the second, and most definitely the third or fourth time. Not my guy, he takes care of everything I need. Takes care of our boys and everything they need. Takes care of everything around the house, all this while he is working a full time very demanding job.

BUT he cannot put my hair into a ponytail to save his life!

I guess I can let that slide :)

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

Bye Bye Cancer, Bye Bye Boobs

Cancer free, cancer free, it’s great to be cancer free!!!

Well I am officially cancer free (and for the moment boob free). My expanders are in place and I think I will be starting the filling process in a few weeks. I had my follow up appointment with the breast surgeon yesterday (which went well, more on that below) and I will see the plastic surgeon on Tuesday (I will be sure to let you know how that goes). During my short hospital stay they were very happy with how I was healing. Most of my pain has been in the armpit area (where the lymph nodes were removed) and where the drains are. I don’t remember a whole lot about my hospital stay except that my wonderful family was by my side the whole time. My hubby spent both nights with me which was a good thing because he spent most of that time scratching my itchy spots about every 30 seconds. The anesthesia and the morphine made me so itchy. During the day I felt like Cleopatra only instead of people on either side of me fanning they were scratching.

My surgery was Friday and I came home Sunday. Kind of quick but I was happy to go home until I got very car sick. That made for a horrible day. The doctor called in a script that was very helpful. Since then I have had good days and bad days. I think the pain medication makes me feel light headed and nauseous some times (not to mention giving me CRAZY dreams). Not having the full use of my arms is not much fun and very hard. I don’t have much range of motion right now. I have started doing my exercises so that should help. Showers are an interesting experience since the plastic surgeon doesn’t want me to get my incisions wet yet. I am not the most pleasant smelling person these days either. I am not allowed to use deodorant yet…blah. I can barely stand the smell of myself. My hubby, sister, and sister in law have spent the week taking care of me plus lots of company from family. Family and friends have also sent over lots of food which has been very helpful.

Right now I have a lot of numb areas. The most uncomfortable thing is the drains. I can’t wait to get those out. That will be up to the plastic surgeon.

I hadn’t looked at my boob-less chest yet and I was thinking of waiting till Halloween to check it out (I thought that would be appropriate :) but then I thought I better look before I see the breast surgeon in case I had any questions. Before I looked I imagined the worst thing I could. The reality was a little worse. Mainly all the extra skin. It doesn't bother me tho. As I said it is great to be cancer free. This of course will also improve as the plastic surgeon does his thing.

Speaking of the breast surgeon my appointment with him went well. The skin and incisions look very good. When you have breast tissue removed the surgeon leaves the skin very thin and sometimes the skin can die which makes the skin turn black. I have almost no areas of black. He said there may be some near the incision but it is hard to tell with all the steri-strips. The pathology is back. The tumor was a little bigger than they thought, 3cm not 2. The left side breast tissue and sentinel lymph nodes were all clear. One of the sentinel nodes on the right had a micro metastasis (a very small cluster of cancer cells, not enough to warrant going back in to take the rest of the nodes out). This will most likely change the chemo treatment a bit. I have an appointment with the Oncologist scheduled for November 12th. I will let you know how that goes too.

Firsts and Lasts

The past couple months have been full of firsts and lasts. After I got the call telling me “Yes I have cancer”, even though it certainly had been there for some time, I started thinking about firsts. This is the first time I’ve been in my bathroom with cancer. (Yes I answered the phone in the bathroom but I was just doing my hair so don’t get all ewwww on me. You know you do it too. Where else would a person with Crohns disease be lol) Anyway this is the first time I’ve seen so and so with cancer. This is the first time I’ve gone to the high school with cancer. This is the first time I’ve been in the grocery store with cancer.

Now I’m going through the lasts. This is the last time I talk to so and so with cancer. Yesterday was the last time I’d go to the high school and grocery store with cancer. Ironically last Sunday was the first time I watched B play baseball with cancer and the last time I would watch him play baseball with cancer. On Friday I will be saying goodbye to Sugar and Spice (no I did not always have names for my boobs I just figured I should name them before they are gone). Sugar (used as a term of endearment) is the one on the left w/out cancer, kind and sweet. Spice (a pungent odor or fragrance (often used before a noun) is the one on the right with cancer, mean and brassy (brightly dressed in a cheap and showy way, and behaving too confidently or noisily). I kinda wish I did have names for them, if only to have a more personal relationship with them. Naaaaaaaa. I think tho I should have a more personal relationship with my new perky boobs. Maybe you can help me name them ;) Well regardless in a few days these boobs will be gone and when I’m feeling up to it I will let you know how everything went and how my hospital stay was (and all its diversions – Lucy: Sense and Sensibility) I just love Jane Austen and I think I will be reading and watching a lot during my recovery.

Why yes I’d love to go out to dinner!

I’ve noticed something since my diagnoses. Everyone deals with a cancer diagnoses differently. I know how family deals with it. My family has dealt with it too many times. My family is the type of family who deals with it with lots of love and support. We are there with each other every step of the way. What I have noticed recently is how other people in your life deal with it. I’m not saying that they don’t love you or care about you because they do. I’m not being critical just observing. I’m sure not perfect. I’ve mainly observed two different responses. They either want to feed me or ignore it. Seriously I’ve had 8 different invitations to go out to dinner. I’m not complaining, I love to go out to dinner so yeah let’s go. Others just kind of ignore it or avoid me which is fine I completely understand it but it is hard to ignore, it’s kinda like an elephant in the room (a big pink one lol). At first I wasn’t sure what to think. Now I think sometimes people don’t know what to say. They may be afraid of upsetting you. It is sometimes easier for people to stay away. Some are ok with talking about it, some aren’t, and some want to feed you :) There is no right or wrong. I would love it though if we all went out to dinner. I’ll even let you pick the restaurant ;)
Ahhh make that 9 dinner invitations (a new one today) Nom Nom Nom :)

Decisions, Decisions, Decisions

Even though I’ve always thought I knew exactly what I would want to do if I got breast cancer - bilateral mastectomy with no reconstruction. A prosthesis would be fine. Then when I was faced with the actual diagnose I found myself wondering what I should do. My first question was “your boobs or your life” hence the title of this blog. The one thing I did know was that if I chose to have a lumpectomy or just one breast removed I would constantly worry that the cancer would come back in the same breast or the other one. Bilateral mastectomy it is. Now the question: to reconstruct or not to reconstruct. I’m very well endowed so I think it would be very shocking to go from that to nothing. I would much rather have a little something so yes to reconstruction. I am going to downsize though.

I’ve been doing a lot of research. Trying to get some idea of what to expect post-op. I’ve come across a lot of helpful information about the surgery, drains, expanders, and even what to take to the hospital with me. (The surgeon said that I could be in for 2 or 3 days.) As a matter of fact I have already started packing a bag. I need to go shopping for some stuff like pj’s that button down the front. I have lots of comfy slipper socks. I know the hospital ones are lovely but I’ll pass. I must remember my chap stick…I cannot live without my chap stick. I also have this spray that is the same idea as dry shampoo. I’ve used it before and it works very well. I don’t know if I’ll feel much like eating but I may throw a few snacks in there in case I get hungry in between the tasty hospital meals. If anyone out there has any other good idea’s please share.

Once I’m home I plan on watching a lot of movies and reading all the books I have sitting around that I haven’t gotten to yet. I guess I’ll be spending a lot of time in my bedroom at first so I’m going to make sure I have everything I need at my fingertips.

Here are some other tips I found on a great blog http://losingmyboobs.com/
Baby wipes – to freshen up
moisturizer, and a brumisateur
Altoids
electric toothbrush
comfy blanket
iPod or MP3 player
cell phone

Anxiety??? Emotional??? Who Me???

Well I’ve had my pretesting done and October 22nd is creeping up on me. Ever since I got my surgery date its been like WOW Oct. 22nd is so far away. When I say Oct. 22nd it still seems far away…until yesterday when I realized Oct. 22nd is two weeks from tomorrow. Now Oct. 22nd is too close. I still can’t wait to get this over with but omg two weeks! All this time I’ve been wondering how much anxiety I’m going to have the week before and the night before. It’s crazy…I’m starting to have anxiety about having anxiety. Ahhh yeah, I’m sure my family is not at all surprised by this. I think I’ll be taking a lot of deep breaths for the next two weeks!!!

Today was an emotional day. I went to B’s high school (for those of you who don’t know my son is a senior this year and a baseball player. He has been looking at colleges and meeting with coaches). So as I said I went to the school to talk to the Athletic Director about the schools B is interested in. I know he has a lot of information and contacts so I’m hoping he can get his name out there some more and bring some coaches to some games this spring to see him play. He is very glad to help in any way he can. He thinks B is wonderful and a great player. Now for the emotional part…I also explained to him that I am having surgery and may not be able to help him much for the next few months. Now its been my recent experience that when I say to a MAN that I’m having surgery they just say “sorry to hear that” and don’t ask any questions. I think they are afraid it is woman stuff that they won’t want to hear about hahaha. Also I find it easier to talk about my breast cancer with someone who already knows. I can joke around about my boobs trying to kill me and that I’m going to have these new perky boobs and everyone is going to be jealous. Buuuuutttt when I have to tell someone who doesn’t know I get very emotional and being the great guy that GN is he asked…and I got very emotional. Ugh!!! I don’t like getting emotional in front of people who are not family or very close friends but he handled it very well and he didn’t ask to take me out to dinner??? Haha but that is another story.

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”

I’ve been diagnosed with breast cancer and this is my journey.

On August 23rd, one day before my sons 20th birthday, two days before my wedding anniversary I got the news that I had breast cancer. I don’t really remember much about the call. She did a lot of talking and I did very little talking. I wrote down what I thought was important. I was strangely calm…and then I hung up the phone. I hung up the phone and burst into tears. I wasn’t really surprised. Because of my strong family history and a cyst that kept filling up I’ve hand many many mammograms and ultrasounds. This time it was different. The cyst had filled back up but there was something else, another area that needed a closer look. There were no smiles from the technician. There were no comments. There was very little eye contact. From the moment just after the first mammogram when they started doing more views I knew. Then when they did the ultrasound I knew. When they scheduled the biopsy for the next day I knew. When I saw the films right before the biopsy I knew. When they scanned my armpit just before they did the biopsy I knew. After the biopsy I laid on the table and the tears rolled down my face, no sobs just tears. The technician was so kind, I knew. I was almost out of the waiting room with my husband when I burst into tears. I told him “It’s bad, it’s bad, I know it’s bad. He said “Don’t say that we won’t know until we get the results”. I knew!
To be continued...