I am 30 years old and have breast cancer

been feeling so fly since you’ve been gone, my face to the sky, sunglasses on

2012-03-01T20:17:00.000-06:00

Today I feel good. I want to focus on what I've learned from my body in the last two years, and it is that no matter what I do, no matter how hard I push my body, I will not ever be that tired ever again. Today I feel good and well and healthy. I slept less than four hours last night, ran 5k this morning, went swimming, lunch, kids, made dinner for 5 kids and 4 adults and I'm still ticking away. I will never ever be tired again, this is what my cancer has taught me today. Actually I've learned a lot about myself and what it means to be so close to nothing and back again, but that's a whole other blog post. Today I'm good. Today I am not tired. Today I am happy.

Today I am a brand new bitch.

super freak, super freak, she's a very special girl

2012-02-23T14:47:00.003-06:00

My scabs from my nipples are completely gone, did that take a long time to heal or what!! Its good to be wound free. I want my scars to lighten so I look like less of a freak but that'll take time. We all seem less freakish if we wait long enough, yes?

So two weeks ago I got talked into running, the things people can convince me to do. They talked me into a 7k on St Patrick's day. I've been practicing about 3 times a week, I think I do like 10 1/2 min miles now, which seems alright, maybe kinda slow. I guess I'm doing pretty well though, I did 10k last weekend just for the hell of it, mind you I said hell of it not fun of it. I've decided that I do not like running on treadmills, running outside is fun though. My toenails turned black, the internet told me that my toes were not going to fall off but that I should probably get new running shoes or some new toes, shoes seem easier to get. Also now I'm only 10 pounds away from my goal weight!! The yoga and pilates I've been up to for a few months is making me stronger too, my back muscles barely hurt anymore.

My oncologist appointment at the end of January went well, he said I was awesome, which makes me smile. I like when I'm a normal healthy 32 year old and not being treated like a medical anomaly anymore. How many times do I really have to hear that I seem really young to have breast cancer? He did say I need to keep an eye out for my headaches to get more frequent and for other things like dizziness and vision problems but I think I'm good, I think I just get headaches.

Happy New Nipples!

2012-01-26T16:49:00.002-06:00

I love when people ask "how's your nipples", its silly and fun and I love telling people my nipples are great! the scabs are almost gone and I've scheduled my tattooing, the tattooing is to color the areola for the nipples to look realistic. Its also the very last procedure I will have done due to my 2009 cancer diagnosis. This new year is going very well as I've made it nearly a whole month without maxing out my medical insurance, whoohoo! The last two years I had surgeries in January and so this year I'm already way ahead. My nipples are going to be tattooed on March 16th. This is supposed to be covered by my insurance if I get it done within 90 days of my nipple reconstruction, however March 16th is the earliest they can schedule me and also it 91 fucking days out from my nipple surgery. Nice, right? As you can tell I'm very thrilled about it. Oh well, c'est la vie.

I'm going to see my oncologist next week for my six months check up and I after March 16th I won't have to visit my plastic surgeon again until next year. I am looking forward to 2012 be a very good year with little medical appts. Who knows maybe I'll do something nutty and take a vacation somewhere tropical. You never know what's going to happen with me next!

NIPPLES!

2011-12-18T20:43:00.000-06:00

I got some nipples on Friday. Talk about words you'd never thought you'd say!! I also got some new t-shirts and you can see my nipples, its hilarious! I can't get over it. I like them, its weird to have nipples, I don't remember having them. Its strange because I've gotten used to my new body, I don't remember my old body and I don't really miss it. I know you want to hear about the installation process now! Or at least I want to write about it. We went to the specialty clinic not the surgery center and they did it right there in a weird surgical room. I got to sit/lay in a sort of dental chair type thing. My husband got to watch and I was fully awake, not sedated. They gave me local anesthetic even though I don't have much feeling in my breasts which worked well on the right side but on the left side I felt pain when he cut through except I didn't feel it on my breast, I felt it on my side. My surgeon said that is very normal, that the nerves will reconnect from wherever they can, he thought I might feel it on my back, because the skin/muscle there is from my back and it still has connective blood vessels and things going into my back. He then told us a story of a girl whose arm was almost removed in an accident and she could feel her funny bone in her ribs, its really bizarre, even though I am sort of an odd Frankenstein myself, I think it blows my mind to think they can put a whole arm back on. Anyway back to the procedure, to start they gave me a shot in each breast of epinephrine, he said that it is so that I don't bleed all over while I am awake and John was there and its just less gory all around so no one (meaning John) vomits or passes out, ect. Which worked well because there wasn't much bleeding, although they don't tell you until you start to feel really shaky that you then absorb that epinephrine into your blood stream and your heart races and you feel shaky and like running and running and running. He cut a sort of odd teepee shape into my breast and stood it up and then stitched it together, and voila! it looks like real nipples! They are very red, bloody gross nipples right now but they look real. After I get the tattoos on them they will look really good. He also revised the end of one of my scars because it pushed up and he made it so that it would be flat, not a really big deal but it bothered me and he likes everything to be perfect. It was funny my Mom said how straight my nipples looked, and I said of course they do, he's not a hack! Before the surgery he measured them out to be very much aligned with one another and they are very straight. After surgery when I was shaky and felt like running they said I should have sugar so they gave me juice, I'm not really sure why having sugar will help with having absorbed epinephrine into one's bloodstream, it seems like that would have the opposite effect of calming you down, I think I'm going to google it now to find out more. It went so well to get nipples, its the easiest surgery ever! I felt very cold and tired Friday night and most of Saturday but being cold and tired is pretty much my standard after surgery. I ate a lot of candy and ice cream all weekend so I'm really going to need to step it up at the gym this week. I also have a lot of other things to do this week for Christmas prep, I think I should go back for more epinephrine to get everything done!

Bras, the bane of my existence, partially solved

2011-10-05T13:31:00.000-05:00

I dislike bras, I like how they look on other people. I wish they would look good on me, I have difficulty with size and the trying on and off is a pain, I'm sure that so many of you agree. I'm pretty sure most people wear the wrong size and or type, I'm also pretty sure I do. I had this problem with bras long before my cancer and removal of breasts and addition of new breasts, ect.

So the other day I got an email from Top Secret Society, a company that sells bras. Asking would I like to try a couple bras that they were launching for breast cancer awareness month, with 100% of proceeds from the sales of this bra going to the American Cancer Society. And of course I said I sure will!!! So I received some bras to try and I must say I really do like them. They are soft and wire free (wire being a bit of an issue for me lately). I'm not a fan of the pink parts and pink ribbons but I understand its what they gotta do, some people out there really like pink, I'm just not one. Both are over the head bras which would be difficult for directly after surgery (there's no arm lifting ability then) but they are very comfortable on my scars and have no itchy parts. They offer me the coverage of my scars so they don't show through my clothes with light support (but I don't need much). I think they would have been nice even when I didn't have breasts for just a bit of cover. I say you should check them out and let me know what you think!

cancerversary number two

2011-10-05T13:13:00.001-05:00

So October 1st 2009 is the day I was told after my biopsy that I did indeed have breast cancer as suspected. Coincidentally October is also breast cancer awareness month. We get to be bombarded with pink ribbons and pink crap emblazoned with pink ribbons, ribbons upon ribbons upon more pink ribbons, you see where I'm going with this, yes? I don't really like pink, I never really have and probably would have preferred a cancer with more blue in it, a color and cancer that wasn't exploited so much. Don't get me wrong, I'm all for awareness but its come to light that a lot of companies covering their product in ribbons don't actually donate so much and also add ribbons to some products containing cancer causing materials. I'm no expert but this website is worth the reading http://thinkbeforeyoupink.org/

This is a tough week for me, with the weather mimicking the weather in 2009, I go outside, only to be forced into remembering the days and hours I spent sitting out in our treehouse alone, dealing with crap. I had seven beautiful days from my diagnoses to my surgery. I'm feeling off this week but more than that I feel lucky, lucky to be here to write this, lucky to be feeling well and looking good. I'm still in the game, gambling away, just like everyone and I'm glad my turn wasn't up yet.

Oh, why? That's what I keep askin'

2011-08-31T15:51:00.000-05:00

So today in the YMCA locker room where women change and shower after working out, I overhear a small girl ask "why does she look like that?". I didn't stick around for the answer as I was on my way to the shower and that mother can figure out how to teach her own daughter life lessons, I've already got two daughters to frighten. So I've been wondering, why do I look like this? Why did I choose to have reconstruction rather than leaving my chest flat with only two long scars? In order to spare a mother and child the torture of my monologue of why I've had reconstruction I've decided to force it upon you, my blog readers.

After you receive a cancer diagnoses people love to ask, "how are you?" If you've ever been really sick or had some tragedy you know how this sounds, it sounds as though the simple question of how you are is turned into them asking if you've gotten one foot in the grave yet. No one means to do it and I'm sure I do it to other people, so this question and the stigma surrounding it is number one on my list of having reconstruction. When I am fully dressed (I wasn't in the locker room) I can walk into a room of people and no one can tell there was ever anything different, there is no question if I am well, I look like everyone else, I feel like everyone else. No one has to wonder and no one has to ask. These strangers I've just walked in on treat me like everyone else because I look like everyone else. I know I am and always have been just like everyone else but for the purpose of appearance I wasn't. I've had my adversity, you've had yours, they've had theirs and now we can all hide it properly. Don't get me wrong when I say that, I'm not hiding from all of you, there are times when I tell complete strangers I've had cancer, and I don't mind talking about it at all. Just only when I want to and when its appropriate.

I'd have to say number two on my reasons list is for myself, for my desire to look good, for my own vanity. Do I love putting on a top that has good cleavage? hell yeah I do, and so do you. We all want to look good, its why we comb our hair and brush our teeth and buy new shoes. Its who we are as humans. Also who doesn't want two fucking awesome six inch scars on their back :)

This isn't actually a list, I'm not sure why I write number one and number two, there are hosts of reasons, those are just my two big ones. There is also of course my desire to be sexually appealing. The stigma my children can avoid by having a so called "normal" looking mother. There are so many other reasons but for me it all boils downs to I want to look good, no matter who is looking.

The fact that my surgeon suggested I wait until I was done with all of my treatments to go forth with any reconstruction has given me the time to think about what I really wanted to do. I feel like even though reconstruction was and still is a hard process, it was right for me and I feel worth it. I'm glad I waited until I was healthy to proceed with it, its making the bounce back much easier. So does having the support of my family and close friends. Thank you all.

In keeping you abreast (pun intended) of my reconstruction process, no I don't have nipples yet, yes I will be getting them someday.

rode home on my bicycle....

2011-08-19T10:28:00.001-05:00

I love biking, I do it for me. I do it to say fuck you cancer with every mile I go. I haven't been biking as often this summer and although the days I bike are less frequent than last year what I lack in frequency I'm making up for in distance (and also at the gym, they have a daycare). Last year I used to bike a lot of days but I couldn't go very many miles. I'm glad to say that in the last week I biked 30 miles on Saturday, had some reconstructive surgery on Monday, and biked 20 miles just this morning, suck that cancer!!!!

I was going to end this post right there, but I know you all want to hear about my surgery. So back in May I got my permanent implants placed. After that settled the right side ended up lower and bigger and just odd in a general way. Both my implant pockets didn't hold (apparently I'm very smooth on the inside) and the implants slid around too much. So it needed to be fixed, that happened on Monday. I had the right side smallized, my surgeon took out part of the skin and that brought it up and tightened it to match lefty, also I had muscle and tissue that was moved from my back during my first surgery in January removed from under my arms, then he cut up the inside nice and good and sutured it so that new implant pockets would form. It was pretty sore, this was a bit harder than the surgery in May but nothing like January. I was on the painkillers until Wednesday, just three days but I hate being on them so I always try to get off them as soon as I can. I feel really good today, still having pain but its lessening. My range of motion in my arms is almost back to normal.

Its a good day to be here. And my sister is getting married tonight!! Awesome day!!

I can't think of a very clever title today

2011-07-21T14:32:00.001-05:00

Oh my goodness time went by fast again, I really need to get to the computer more, it was getting very dusty! I was home quite a bit last week or maybe it was the week before, I potty trained my two year old, that went well and now she's all good. I've been rather lazy about potty training her, so its about time I did it. Being at home a lot didn't make me blog more however. Dagnabit!

I saw my plastic surgeon on June 30th and I'm going to have another surgery on August 15th. This is a few days before my sister's wedding, four days, but since last time I felt well enough to go to the grocery store on my own the next day, that should be fine. I'll try to be off the pain killers so that I can drink properly :) This time he is going to take out the panel of skin that he added to my right side in order to make my right breast the same size as my left. So no nipples this time. I'm hoping for a quick turnaround after this surgery for the next one because I want to get them all in by the end of the year. I've reached my insurance maximum so I don't have to pay anymore this year, I want to get all the things in that I can.

This afternoon I am going to see my oncologist, get some blood work done, ect. ect. I love going to see him when he's gonna tell me I'm just all fine and well. So off I go. I got my MUGA results back from my scan last week and my ejection fraction went up, it was 60% and now its 64%. So not only am I right in the middle range of a healthy ejection fraction but it is also going up. Must be all the cardio. I've taken to exercising for an hour instead of a half hour now when I go to the YMCA and when I go biking I'll do no less than ten miles. I have a thirteen mile bike ride that I'm liking a lot these days. If it wasn't 100 degrees out there lately. Over all I feel good.

So Nice

2011-06-20T20:51:00.000-05:00

Oh my goodness I'm busy. I'm sorry I haven't been reading any blogs, I'm sorry I haven't been writing mine! I don't even know what I've been doing but I feel like I haven't sat down in a month. My daughter finished kindergarten, so its officially summer around here, we really should be lazy and drink lemonade all day in bikinis. I'm hoping to get some laziness done soon. Talk about lazy, apparently if you forget to call the cancer center or just don't really think about it much anymore they just schedule appointments for you, so I guess I need to have a MUGA scan and labs and see my oncologist next month. Nice of them to be keeping track and taking care of that for me because I sort of forgot. You'd think that forgetting to schedule Dr. appointments would be a bad thing, but any time that I can forget about the cancer center and all cancer related things its actually a good feeling.

My reconstruction process is the same as my last entry, just waiting out the time my surgeon recommended until he wants to see me again. Which is next week, so then I'll probably have more to say about that.

Overall I'm feeling good. Slightly tired but that's from the lack of laziness. Most days I feel like a regular person which is very uneventful and regular. Exactly the way it should be :)

The ladies bras, the ladies bras, the ladies knickers, and the ladies bras.

2011-05-11T15:55:00.000-05:00

My surgery to switch expanders for implants was a little over a week ago, it went brilliantly! I didn't throw up!!! I have a throwing up problem from anesthesia and narcotics and such so this was a huge accomplishment that I didn't. My implants are good, very soft and so much more comfortable than tissue expanders. I was off the narcotics within a day this time and felt 100% better after five days. However, I did cheat and went to workout at the YMCA on the 2nd day after. I went to my post op with my surgeon yesterday and he gave me the all clear to exercise and resume activity. I didn't have the heart to tell him I'd resumed my normal activity the day after my surgery. If you'd seen me that day I was hilarious, here it was the day after I had surgery and I thought I could go to the grocery store, all by myself. I could barely get the milk in my cart and the back of my car closed, but I did it, I got home with all my food and then couldn't carry it inside! Luckily my mother-in-law was around to help me get the food in the house, although I felt like a fool asking her.

My breasts look good, I think I'll need an adjustment because the right side is still bigger than the left and I want to get nipples, I'm not sure why I want to get the nipples because they won't function but neither do the breasts so I might as well just get the whole works. My surgeon has me wearing bras 24 hours a day because one of the implant "pockets" is a little bit too big, so he thinks if I wear a bra it will hold the implant in place in order for the pocket to seal around it. I'm skeptical about it but I'm not a surgeon. I go see him again in two months. If you saw me yesterday I was so angry and frustrated with him, I didn't want to wait two months with two different sizes of breasts again! I was downright pissed off at him, today I'm better. I got some bras and righty isn't actually so much bigger than lefty with a bra. And I feel like maybe he is right, maybe the pocket will seal up and I need to wait and see how much swelling will go down. But I'm going to make my appt for six weeks out instead of two months, so there!

I've discovered I like wearing bras, I don't think I'll enjoy wearing them much for sleeping though, that's going to get old pretty fast. Wearing bras makes me feel more like a normal person, I'm not sure why, but its good none the less. I went shopping for bras yesterday and today, its like my first time, I knew what band size because I measured but I wasn't sure about the cups and style. I've probably tried on about 50 bras in the last two days. All those tiny hangers, all those tiny hooks, I'm done for awhile now. I ended up with four regular bras and one sports bra for sleeping. I bought a bunch, took a bunch back to the store, bought some more and so on. It's a really great feeling, yesterday when I left the clinic after he told me to get bras I was so upset and now that I have them I feel great, my body feels better and I feel better in it. Surgeons are so smart sometimes.

You sure have changed since yesterday

2011-05-01T16:36:00.002-05:00

I will be changing, or my body will be once again. Tomorrow (Monday May 2nd) I am having another surgery for my reconstruction to replace my tissue expanders with my implants. This isn't the final surgery in my reconstruction process but none the less important. My reconstruction surgeries are done in order of the most dramatic, at least that's how I like to think about them, since I've had the first and most difficult the rest should get easier and easier, right? Tomorrow is going to be easy peasy as far as my surgeries go, out with the expanders, in with the implants and a bit of tissue removal and scar correction. No big deal.

Well then anyway. Here I have compiled for you photos of the changes that happened to me over the last 18mths, I have no photos from my mastectomy surgery Oct 2009 because mostly I wanted to live in a dark cave at that time. These photos begin after I've finished chemo and began radiation. Some of them could be more than you want to see, so if you don't want to see them, just don't look.

The first row are photos from May, June and July 2010 during radiation treatment.

The second row photos are from January 23rd 2011, a few days before my first reconstruction surgery.

The third row are photos just following my January 2011 surgery.

The fourth row are photos from today May 1st 2011.

And tomorrow I will be changing again.

Click picture for full-size image.

Fear can stop you loving, love can stop your fear, but it's not always that clear

2011-04-21T11:01:00.002-05:00

I've been missing, I haven't been blogging. I'm not sure I've been found yet. I had a really good friend that hurt me, she is hurt too. We did everything together, She came to my appts when I couldn't go alone, when my husband couldn't come with me. I love her so much. She was one of the driving forces behind my reconstruction and now its hard to keep going with it, to make my appts, to go to them alone. One of my biggest fears is going to the doctor alone for something normal (not that any appt relating to cancer and its treatments is normal per say) and the doctor finding something more is wrong, that something will be terrible and I will be there alone. When I had my first mammogram and ultrasound for the lump I found I went alone. I was convinced that the small lump I felt was a cyst, no big deal. I had no idea that they would find a second area with a much larger more invasive cancer. That they would tell me I had cancer while I was sitting alone, wearing a gown in a darkened room. A few days later I went to my biopsy. My husband came with me to this but they wouldn't let him come into the room. I'm not sure he knows this or not, but I almost left. I was afraid and I broke down, I told them to let him in or I was leaving. They somehow convinced me to stay, that he was right there to come in after. So I've developed a phobia of going to my appts alone.

Draw a map, find a path, take a breath and run
Today I am going to my pre op with my surgeon by myself, isn't this how one is supposed to overcome a fear, by standing up to it, facing it, telling it how you feel and sometimes just to fuck off. By saying this is me, this is what I am doing.

I'm having a pre op today because on May 2nd I will be having my tissue expanders removed and my permanent implants placed. Today my surgeon will go over everything and choose my implants and serial numbers. We will talk about any other things I have on my mind about how I want to look. I am very much ready to be done with expanders, as they are painful and uncomfortable. Next week I have another pre op with my regular family practice doctor, this is just to make sure I'm regular healthy. May 2nd is coming up fast. I hope that I will be good to do the Race for the Cure a week later. I originally signed up to do the 5k run but I am going to have to do the 5k walk instead because of my surgery. I'm thinking I should be able to do the 5k walk, since after my last surgery I went to the YMCA to work out a week after being released from the hospital. I should put up a fundraising link here for anyone to donate but right now my babysitter has arrived and I'm off to my appt. Later I will put up a link.

EDIT : Here is a link to my Race for the Cure fundraising page, thank you to anyone that can donate!

Team Fuck Cancer, Race for the Cure

yesterday was like today

2011-03-09T14:23:00.000-06:00

I'm not trying to be a whiner, but really that's what I am going to do.

People like to ask me, "You HAD cancer and now you're all better, right?" "Why yes", I say, "I am great, I feel good". When I say this to you I mean it, I am good, I am alive, I'm very glad to be. But I am also a cancer survivor, I still have side effects from cancer and its treatments, while I currently do not have cancer. But its not the same as "I had a cold and now I'm all better". Mostly I have pain, its been with me since my first surgery in 2009, I have the pain from that and I have the pain from my latest reconstruction surgery. I may never be pain free but its tolerable. My feeling of "good/great" is relative to what I felt like during treatment and for months after, I no longer feel sick constantly, my joints and bones only ache sometimes, only once in awhile do I feel like I was stabbed in the chest or back (this pain, so I'm told, is from nerves that have been cut). During my typical day I go through different things, today will I have a lot of pain or a little pain? Will I have new pain? Will I worry about it? How is my digestive system holding up? Did I eat too much dairy the day before? Will today be the day that my stuffiness and cold go away? Stuffiness that I've had since November 2009. How many hot flashes will I have today? How much will I think about cancer? How much will I be sad about it? All of these things don't happen everyday, some days I barely think about it. Some days I've been known to think about it too much. All in all it will be fine, I just wanted to say that it doesn't ever go away. I'll always have had cancer, I'll always have some sort of suffering from it, whether it be too much worry or physical problems. But really I am OK, I am great.

A side note about healing from my reconstruction, I was scratching at some skin which was like a scab and I pulled it and about an inch long suture came out. It was equal parts gross and hilarious and surprising, so naturally I laughed and cried at the same time. Other than that hilarious incident I'm healing well, my back scars are looking good and smoothing out, I no longer have fluid build up in my back. On my breasts the left side which had radiation looks very red around my incisions (there is a small bit of radiated skin that they didn't cut out), we think this redness is due to the stretching of the skin from the expander. It doesn't seem infected or gross and I'm going to ask the surgeon about it next week. Also next week I'm going to talk to him about the next steps in my reconstruction process, like when I can get it done. I feel like I've reached the size I want to be.

The universe itself keeps on expanding and expanding, in all of the directions it can whizz

2011-02-22T17:03:00.000-06:00

Tomorrow it will be a month from my surgery. My scars have a few scabs remaining. About a week ago I think I finally got all the steri strips and tape residue off my skin. I still have sutures that are inside, they will all absorb eventually, I'm not sure how long that takes, I can still feel them in there. A few sutures are pushing their way out but I just keep cutting them off as the poke through, its really annoying but quite common. The sutures that poke through look a little bit like fishing line, I sure hope they weren't using supplies from their tackle box.

My breasts are a little lopsided because the right side has a lot of fluid from when they had to pull my drain in the hospital (a nurse cut the tube for my drain and so they had to take it out early, the surgeon was pissed). I saw my surgeon today and I got my expanders filled, he filled both sides so I'm still lopsided. I don't think anyone notices the lopsidedness or at least they pretend not to, most likely no one would say anything. Filling was interesting, the ports to fill the expanders are magnetic so they find them with a plastic thing that holds a dangling magnet. I should have asked how much they put in but I forgot, they are bigger but don't feel any differently than before. They already seem so big, I talked to him about the size and he said I should come next week, get filled again and then maybe be all done filling. After I'm done filling I wait about three months to let everything heal and settle in and then get switched with the implants. The muscle that they moved is also adding size, so getting my expanders filled only a little bit is still going to create a realistic size for my body. I wanted to get some photos of the expanding but I went this time by myself, next time I will bring someone. I also asked about a sharp pain I have in my ribs, just below my left breast, he said it was likely from the expander sitting on a nerve.

I have been going weekly, sometimes twice weekly, to get fluid drained out of my back. The fluid is fairly normal, and the amount is going down, the first time was 120ml but its about half that now. I had a lot of pain over the weekend so I figured there was a lot in there but they only got out 35ml. They said that pockets or walls are starting to form instead of being one big pocket and thats good because it means its healing. I may not have to have any more fluid out. When I go in they use a big syringe to aspirate the fluid out, it hurts sometimes, it depends on where they have to get the fluid from, close to the incisions my back is numb so if its close enough then I can't feel it. Today they did it a little farther away so it kind of hurt. Then I gushed blood everywhere, literally everywhere, all down my back, oh well I wasn't using it all anyway.

Here is a photo of them getting the fluid out of me the first time, the syringe here is one of three that they got out that time.

big syringe sucking fluid out of my back

I see you, you see me

2011-02-13T13:04:00.000-06:00

Its been over two weeks since my latissimus flap breast reconstruction and I'm doing fairly well. I can lay on my back and my sides. I can sit in most chairs and I can reach things on high shelves, as long as they aren't too heavy. My range of motion is good, almost 100%. I still have a bit of weakness and get tired a lot. I've worked out at the YMCA a couple of times and I want to go even more, I'm not sure I should be doing this but I'll do it either way. If I don't push myself and if I don't do the things that are hard for me I'd probably never have gotten out of the hospital. My pain is what it is, nothing I can't handle. I was off prescription pain killers a week after my surgery and now I just take ibuprofen occasionally, I hate narcotic pain killers so this was important to me. I love my new shape even though its still only tissue expanders and lopsided, also my breasts are so much bigger than I want them to end up, mostly because I am still very swollen and have some fluid in there. My plastic surgeon knows this and smaller is always an option, he's super good and I'll let him know at any time what I want. I'm surprised every time I get dressed at the difference in my clothes, going from nothing but flat to having breasts is weird and really great! I love putting on things I used to wear and had been disappointed in, because now they look so much better. I'm so glad I did it and I don't know why I ever thought I shouldn't, the pain and everything is definitely worth how I will feel with the results.

I've been putting up images on my flickr, I've only put images of my back up there because I'm not comfortable with having the front images there. If you are going through this surgery or if you are genuine about seeing the front images let me know and I'll be more than happy to share, I've shared them with a few friends and relatives and have no problem sharing. Its strange that I don't feel comfortable putting those images there and I realize that. Because they aren't actually breasts, they have the shape of breasts and that's about it. Its amazing to me, the social stigma that is keeping me from posting the images, I'm floored by it and it makes me curious about myself and my reasons. Maybe I'll just post the images, who knows, sometimes I surprise even myself.

i've smelled the hospital hallways

2011-01-29T20:12:00.000-06:00

I'm still at the hospital recovering from my reconstruction surgery on Wednesday, my arms are pretty weak but i can get them about shoulder height already. My back hurts when I change positions, its tight and feels like its pulling but mostly tolerable, its hard to get from sitting to standing, those muscles were good for that I guess. My other muscles will hopefully step up and do it for me eventually. I think I get to go home tomorrow, I've been eating and drinking today, those are the requirements and I'm off IV pain killers and I can use the bathroom like a big girl. My tiny breasts look nice, they are very hard but overall a good shape, still a lot swollen though. I am very ready to go home.

This is only a chapter

2011-01-19T14:54:00.001-06:00

Tomorrow is Thursday, (excepting those who are living on the other side of the international date line), but to me tomorrow isn't just Thursday, tomorrow is 52 weeks since I started my herceptin treatments, it is the very last and final herceptin treatment I will ever receive. It is going to be a great day! While herceptin itself doesn't give me so much in side effects as chemo, it does offer a few of its own. I'm glad to finish. I will from this point onward see my oncologist every three months for checkups and labs, YAY!!! Trust me when I say that the less time spent at the cancer center, the better.

Next week I am having my first surgery in my reconstructive process, I've been on (and off) the fence about this surgery since I first scheduled it, for a number of reasons this is the worst time to have surgery and for other reasons this is the best time to have surgery. So I'm just going to do it, and do it like a boss!!! Its going to be difficult but not impossible, things are only impossible when you aren't trying hard enough.

I caught you 'cause I want you and one day I'll let you go

2011-01-09T19:47:00.000-06:00

Most of you know I have a port-a-cath, I've had it since Oct 2009. I'll soon be saying goodbye to it, in the next couple weeks I'll be using it just a few more times. I have a heart scan (MUGA), a blood draw (for labs before I see the onc) and my FINAL Herceptin treatment, I'll have my port accessed for all of these and then I will hopefully be done with it forever. When I have my reconstruction surgery on Jan 26th, they may take my port out, in fact I am going to encourage them to take it out very much. They don't have to take it out but while they're in there they may as well do it. I want to keep it as a sort of souvenir and the surgeon seemed to think that would be ok. I'm ready to have it out and be done with it, it was good to have it for its ease of use during infusion and to save my veins in my arms but I'm ready to not have it bumped by my kids all the time and stick out like a sore thumb when I wear low cut tops. Here are a series of photos to say goodbye to my port, and later I may add a photo of it after I have it out.

Smart Port^® CT Power-Injectable Port

My port immediately after placement 10/20/2009

My port 10/20/2009

My port in use 12/30/2010

My port 1/9/2011

It's a marshmellow world in the winter

2010-12-15T08:27:00.000-06:00

We have snow here in Minnesota. I know you're thinking, great! another post about snow, I'm so over that. Or else you're thinking, dang! I'm in Canada or Colorado and we have so much more snow than you do, you whiner. Either way this isn't about snow, so just settle down. It's about how on Monday night I went to the first meeting for a NEW twin cities affiliate of the YSC. I got there late due to the fact that I was running out of gas and got off the freeway in a place where gas is not so much available and they had received 17 inches of snow which had no where to be pushed, but I made it there before the meeting was over anyway. The woman getting it all together is going to setup a facebook page soon but if you know of any young survivors that are in the twin cities and surrounding communities that are interested please have them email me and I will direct them to her. You should be able to contact me through my blog profile. This is going to be a great resource for young women who find the groups at the hospitals to be composed mostly of their grandmother's generation. This group will allow us to meet other young women with the unique issues that we face together. Hope we get more joiners!!

thank you for making me feel better

2010-11-23T19:06:00.000-06:00

This Thursday is Thanksgiving here in the USA. I should be more thankful for life, liberty and the pursuit of happiness but mostly I feel the same as I have every other thanksgiving before I had cancer. I am thankful that this year I feel good, much much better than last year. Last thanksgiving was a week after my second chemo and my hair was shaved and the stubble was falling out. Needless to say I felt like crap. This year I'm glad I feel better but I don't feel profoundly thankful. I've yet to feel very profound about my cancer experience, I think a lot of people do but maybe an equal number of people don't. Maybe some people fake it, the world may never know.

I've scheduled a date for reconstruction surgery, its January 26th 2011, that is unless I chicken out. I feel ready to have the surgery, I have four herceptin infusions left and then I'm done with treatment. I will be having the first surgery to move muscle and tissue from my back with tissue expanders included to create new "breasts", this is called Latissimus Flap Reconstruction, because it moves this muscle Latissimus dorsi muscle. My surgeon says I won't need this muscle on my back unless I love rock climbing and/or boat rowing, both of which I've never done. I will end up with two sort of diagonal scars about 5-6 inches long on my back, I will like to joke that this will be because I'm a fallen angel and the scars are from when my wings were cut off, you can feel free to laugh at this whenever I say it because I might say it a lot, you can also feel free to roll your eyes when its the tenth time you've heard it, either way it won't make me stop saying it. If you feel daring and or curious you can feel free to check google images for photos from this type of surgery, or you can just ask to see mine after. I am recommending a few people do not check google images, you know who you are. Also I am reserving the right to decline people that ask if I feel weird or creeped out or if we are in a restaurant of some kind. So after that I will have my tissue expanders filled occasionally until about 3-6 months after my initial surgery when I feel that I've expanded enough, then I will have another surgery to place implants. Then sometime after that I will have surgery to have nipples installed and perhaps another surgery to get everything looking symmetrical and good if there are any issues. Then, yes there is more, after all is said and done I will have my nipples tattooed to look like.....well you all know how nipples look so we'll leave it at that. Next year is going to be busy with 3-4 surgeries and such, but the results will be best for long term even if its more complicated in the beginning, that's what my plastic surgeon says anyway, I'm taking his word for it.
All in all I'm hoping this surgery goes well since there won't be any undo button.

somethings changed in me, you're already more than I've ever dreamed and I won't leave without you

2010-11-11T09:38:00.000-06:00

I've been overwhelmed recently, with everything I never allowed myself think about my body and cancer before. Its a years worth of pain and anger, a years worth of sadness, loss and fear. It fell out of the sky and hit me last weekend. I had an MRI of my brain for headaches, the MRI was clear (yay!) but the fear from what could be opened up a gate I'd been desperately keeping closed. I'm afraid of the future. There is nothing I can do about it, I need to learn to accept it. To see through my fear to what I have that is good. I haven't yet sought out help for this which appears to be depression. I have talked to people close to me about it and I feel strongly that I can work through it without a professional, don't get me wrong here I'm not in denial, I have the number of the psychotherapist at the cancer center with me, and I will reach out for help if I need to. Right now I feel fairly confident that my recognizing the things that are after me will help me to fight them down. That and the people around me are willing to put up with me being hurtful towards them and still be understanding.

Whatcha gonna do with all that breast, all that breast inside that shirt, or if you don't like the black eyed peas "Women are variable as April weather"

2010-10-29T14:35:00.001-05:00

I may have written in the past about getting breast reconstruction surgery and I may have written that I didn't want it. I could check my past posts but I have a headache and I'm lazy right now so we are just going to pretend that I did write about it and I was against getting it. Well as they say women can be fickle and I've since changed my mind. I had a consult with the surgeon in April 2010 and went over my options, since this was right before I was to start my radiation treatments I didn't and couldn't have any surgery right then. I was to weigh my options and get back to them. I had decided against it and so never actually got back to them. I think now that I want to get some sort of reconstruction and so I now have another consult next Thursday. I have some questions and want to go over my choices again, I'll let you know what I decide, they told me before that I have to have a more complex surgery than straight up implants which is sort of going to suck for recovery but thats because of my radiation skin not being very stretchy. Either way I hope to get new breasts that are symmetrical and make shirts fit a little better, also I'm going with smaller than the originals.

Next Thursday I also have a brain MRI, sounds exciting right? I'm sure it will really fun, let's hope I don't have any metal foreign objects in my body or any tumors in my brain, ok? I've been having a headache, I am going to refer to this as a headache, one single headache, because I've had it for going on a about a week now, it doesn't ever go away. So I don't want to say I get a lot of headaches, because that's just not true. Apparently this one very long lasting headache warrants me having a brain MRI, I'm leaning towards the cause being stress and/or caffeine addiction. I'll keep you posted on this, but I'm sure it will be totally fine.

i do it for the joy it brings

2010-10-19T09:58:00.000-05:00

I've been thinking about joy, about what makes me feel content and happy, I'm not sure if having had cancer makes me different, its perhaps made me more aware of what I feel, but not different. Having a clean house, getting something done, cooking something new and it working out, those things make me feel content, I've accomplished a task. But there are the things that bring me joy, the people I love laughing, the people I love enjoying the clean house, the meal I've cooked, small surprise gifts that I've given them and just knowing that there are people that love and care about me, that is joy. I've found that I want to do the things that bring me joy, I want to be happy for my short time alive. By all rights its very possible that I have sixty more years to live, its also possible that I have two days or one week (that bus is out to get me I'm sure). I think either way its still a short time, we all have very short time here compared with things like rocks and trees that have been here hundreds or millions of years. We have the advantage over rocks and trees though, that is the advantage to feel love, to feel anger, sadness, fear, most of all happyness. If we can find something that makes us feel joy, should we not do all we can to feel that, should we not do everything we can for others to feel the same way? What did you do today that made someone else happy? How does one give the gift of happyness, why would anyone take it away? I don't know the answers to these questions, I think the answer varies depending on whom you ask. My answer might vary depending on the day you ask me but I do know what I want, I want to feel content, happy, joy. I also know that along with these things I must accept anger, sadness and fear.

it's that little souvenir of a terrible year, which makes my eyes feel sore

2010-09-29T23:06:00.001-05:00

September 30th 2009, one year ago, the day I went for my breast biopsy, a very scary day. I went to my biopsy, they pretty much said it looked like cancer, I went to my friends house and didn't eat pizza, I went home and slept. A lot has happened in the last year, I was looking back at my calendar from the last year, not a recommended thing to do, don't look back on your past, don't think about the days that past you by while you were sick, sleeping weeks away. Everything is in there, the day they called me at home, 4pm Oct 1st 2009, they called to tell me the results of my biopsy, I had cancer. I remember that moment clearly, the feelings I had I can't describe, I can't write about it now, maybe I never will be able to, its a private moment, my husband and daughters were there, I remember hanging up the phone, telling John what they said, Clare asked me for something, I remember wiping my face and just going back to being her mother as though nothing had happened. The next day we met with my breast surgeon, he went over all that would happen and the choices I had, we made a lot of decisions in a few days, we made a lot of choices and plans. Oct 5th I had my preop appt, Oct 7th I had my surgery. So many things so many months ago. On my calendar I see surgeries, appts for chemo and notes about fevers that I had. Molly had chicken pox right after my 3rd chemo infusion, I had appendicitis and my appendix out, both my girls had pneumonia, I had radiation for 35 days. Along with all of that we had our lives, preschool, playdates, we had birthdays and holidays, we had visitors and lonely days. We had a lot going on, it was hard. We are here now, well enough and we still have our lives. Living, doing the things that make us happy, doing the things that make us sad, doing the things we have to do, its what we have, all we have. Enjoy it, every moment, every minute.

Funny thing about calendars, they repeat each year, Oct 5th 2009 I had my preop appt. Oct 5th 2010 I go in to get my results from my genetic testing. Oct 7th 2009, I had my breasts and lymph nodes removed, Oct 7th 2010 I go for my 21st Herceptin treatment. Different things happening on the same days, all of them mean a lot and can change the course of life, but they all have to be done. No one can say what the next year will bring, but I can only hope it brings more living, breathing, growing and loving.

because I love the unknown

2010-09-22T07:04:00.000-05:00

Today I go for my genetic testing to see if I have the BRCA1 or BRCA2 gene mutations. The results of this test will help to determine my risk for other female cancers, with these gene mutations the risk goes way up not just a little but a whole helluva lot, so it will kind of suck if I have either one. If I have either of these gene mutations then my daughters could have them too, although they can not be tested until they are adults. I want to get this test because it would be good to be able to know my risks but I don't want to get this test because would you want to know if that bus coming down the street was going to hit you?

Also the testing is very expensive, luckily (or maybe not so luckily) because of my youngness and previous cancer history healthpartners is going to cover the basic testing for me. Since I don't have a family history of breast cancer only the young age that I got breast cancer qualifies me to get the testing. Now because of my cancer this also qualifies my siblings to get the testing and my daughters when they are adults. I doubt that any of my siblings are rushing out to get tested because, like me, they'd probably rather not know. I don't know if this will change if I test positive for the mutations.

When I initially spoke to the genetic counselor the BRCA genes were patented and therefore the one company who owned the patent could charge whatever they wanted for the testing. Since then the United States District Court has ruled the patent invalid. I haven't spoken to the genetic counselor since then so I'm not sure how my coverage is affected. I'm guessing healthpartners will still cover it. I don't think that the ruling will change anything for me to get the testing but I think it can for many other people.

This is for my peeps and the freaks in the front row

2010-09-02T14:07:00.001-05:00

This weekend is going to be one year since I found the lump in my breast. One month from now I will "celebrate" my cancerversary, the day they called to confirm my biopsy results were malignant (more about that later).

I wanted to write today a thank you to the people who held my hand, cried with me, watched my kids, made me meals, made me laugh, made me jello, made me get out of bed and loved me throughout the last year. Thank you for being there when I needed you and always.

Don't think I don't think about it

2010-08-20T08:35:00.000-05:00

So from my last post you noticed that I am a quitter (the one in which I quit endocrine therapy) and I'd like to tell you how that's going. Pretty well in fact, I feel better, more calm, more rational. I'm still having a few side effects such as hot flashes as my body works out how much hormones it is and isn't supposed to be making but overall I feel in control of myself again. I'm not sure how long it will take for my body to work itself back to normal, I'm giving it a month. I still feel solid in my decision to stop the hormone therapy.

Since I've been feeling fairly normal, I'm waiting for the day I forget I have cancer. I wonder if that will ever happen? I'll just be sitting there or driving some where and all of a sudden "oh right, I had cancer". Maybe it will happen, maybe it won't. Or maybe someday when people greet me they will ask me how I am doing out of social necessity rather than because they know about my cancer. Maybe I won't ever be able to get the reminders out of my head, the pain, the scarring, other people with their breasts and bras, maybe the stigma of these things will lessen over time, it has already to some degree, someday it will be so tiny and fleeting that I won't notice. Oh yeah, and by the way, yes, if I'm looking, I'm probably checking out your breasts.

You got to know when to hold 'em, know when to fold 'em, know when to walk away and know when to run

2010-08-10T14:18:00.000-05:00

I've decided to end my endocrine therapy. This was very hard for me to decide. On the one hand I want to do everything I can to prevent a recurrence but on the other hand taking the Tamoxifen and Zoladex does not guarantee that I won't still have a recurrence. After much mental debate I've come to the conclusion that if I were to continue and still get a recurrence then would be more pissed off that I went through five years of feeling like crap for nothing. I stopped taking my tamoxifen on Sunday and today I was supposed to receive another implant. My husband and I met with my oncologist today to talk about my decision, he was very nice about it and didn't try to pressure me into continuing it at all. He offered me a few choices to try, one being the antidepressants, but I've decided that I like estrogen and I like myself when I have it. I don't want to take antidepressants to cover up side effects from the lack of estrogen only to add more side effects from the antidepressants. Its like getting an air freshener because your garbage smells, instead of just taking out the garbage.

I feel like a weight has been lifted and I no longer need to think about it. I'm not going to regret my decision or change my mind. A small part of me does feel like it may be a foolish thing to do, to not try everything I can, but a much larger part of me wants to feel good and well again like I did a month ago. I don't want to feel angry and have constant headaches and leg cramps and vaginal dryness and mood swings and oily skin anymore. I want my estrogen back damn it! And I'm sure I'll get it and it will be great and life will be great for at least another 20-25 years, until I reach natural menopause :)

she's fast, thorough, and sharp as a tack

2010-08-05T21:26:00.001-05:00

I've realized that I never really talked about the most important people of the medical team at the hospital, the nurses. They are great, they deal with all the patients calmly and professionally, there is the old guy that makes rude jokes, the bitchy woman that watches price is right way too loud, the homeless guy that comes for his infusion and wants to eat tons of snacks, the nurses care about all of them and their individual quirkiness. I have a great team of nurses, I'm not sure how many nurses there are at Regions cancer center, I've probably had about five or six care for me in my time at the cancer center but I always love MY nurse Cheryl, she is the best. She knows what works for me and what doesn't, she knows I hate being offered blankets, she asks about my kids. She's a breast cancer survivor herself and understands much of what is happening to me.

Today Cheryl wasn't working so I had another nurse, one I've never had before. She was very nice and straightened out an appointment scheduling problem that I had. She did make a mistake though, she infused my Herceptin in 30 minutes instead of 90 minutes. You see there is a pump that they run the IV tubing through and it can control the speed in which the fluid is infused, well it was on too fast. It was great because I got out of there super early. But I'm not sure this is the best thing for one's body, I asked her if I could just do that everytime and she said that my oncologist wouldn't allow it. I'm not actually sure what could have happened to me if I had some kind of underlying condition like a bad heart or something. Mostly I felt a little spacey and a bit nauseous, which went away within an hour of me leaving. I'm sure I am young enough and strong enough to handle it, there's no concern of me being allergic since I've had it before but I wonder if it was someone else, someone weaker or sicker what would happen.

I fell into a burning ring of fire

2010-07-30T07:31:00.000-05:00

Two weeks ago I wrote about starting tamoxifen and zoladex, the two weeks that have past with me on these drugs have been filled with emotional turmoil. I am apparently falling into a pit of angry confusion and taking everyone I love down with me. I hate being angry and irritated, I hate that it has rubbed off onto the people around me. I wrote an email to my oncologist regarding this, he's offered to see me which I will try to do next week while I'm there. He has also offered me venlafaxine/effexor, which at this point I am refusing. He also told me that it can take a few months to get acclimated to the new drugs, I've decided that I'll try a few months and see how it goes. Hopefully in a few months I will still have the people I love.

Can you tell I'm feeling crabby? In case you couldn't I feel like crap today, maybe I need a hug.

2010-07-15T15:56:00.000-05:00

I had a long day at treatment today, can I please say again how much cancer sucks! Had my herceptin again, the last three weeks since I had it went fast. I saw my oncologist and we decided that I am going to start endocrine manipulation, sounds creepy huh? Well its just some drugs that block my body from making and interpreting estrogen. I will be inviting menopause back to my body with all its bitchiness, angriness and hot flashes, this should be fun. I start taking tamoxifen pills tonight, these keep my ovaries from producing estrogen and therefore feeding my estrogen positive cancer. I also started on zoladex, this works by blocking my brain from making estrogen. These both come with really fun side effects and zoladex is an implant, I got one injected today. First I hold cold cold ice on my belly for ten minutes where the HUGE needle is going, then this giant needle is stabbed in and the implant released, its not over yet folks, after that is more ice for five minutes. This fun and exciting shot is administered every four weeks. Both of these treatments will last five years. The menopause I will get as a result of these will likely last forever. Lots more visits at the cancer center to look forward to.

I showed them my radiation burns at the cancer center today because they are ooey and gooey. They said I better go see radiation therapy about it, so I did, and I got some really funny foam bandages Mepilex Lite. Its so squishy, its supposed to make my burns heal faster. Bonus, it also keeps my shirts from getting gooeyness on them.

untitled

2010-07-03T13:44:00.002-05:00

I finished radiation on Tuesday June 29th.   I'm glad its over. I actually wish the whole thing was over but I may have been saying that from the beginning.   I still go every three weeks for my targeted therapy, Herceptin, that lasts until January 2011.   My burns are getting better in my first three fields, my fourth field is getting worse but it gets a little worse before it gets better they said. The skin is peeling off of the burns now, I may have been "helping" it, its really hard not to peel skin even though I know I shouldn't. The skin that comes off is sort of toast colored, I suppose because its burnt.

The other day my friend told me about an article that she read which stated that people who don't stay active during their cancer treatment can feel as though they've aged 10 years.   I don't know that I was very active, I was just regular active. I do know that there definitely wasn't too much laying around or sleeping late with a toddler and preschooler. Over the winter I didn't actually do much for exercise, I only started biking since the snow melted in March or April and walking a little bit before that, but I don't feel as though I've aged very much. I may actually feel younger now, but that could relative to feeling as though I was 80 or 90 years old during the six months of chemo.

Looking back now it seems to have gone very fast, there was a time in December and January when I wanted to quit, I was so sick with fevers and chemo side effects, time was not passing quickly then.   That seems like such a long time ago now. Now I feel normal again, my new normal, it comes with a lot of pain and a lot of pain in the ass but I can make it work.

But officer you can't arrest me I fully intend to bring it back and happy graduation to Ben

2010-06-17T20:18:00.001-05:00

Radiation is a blast, literally. Tomorrow was supposed to be number 28 of 33 treatments, but because of my good behavior my doctor is giving me two bonus days. My doctor came to see me in the treatment room today and after he measured around on my chest and drew all over me told me that he thought I better have two extra boost days. I have been getting a "boost" of radiation these last few days, which means they have added a fourth field to my usual three fields. This new fourth field is the area around my scar, a sort of strange sausage shape. This is where I had a giant tumor with very close margins, which is why I get a "boost" and two extra days. Oh well what's two more days, at least on my extra two days I only have to get my fourth field. On my last day I'll have to remember not to steal my gown, I have been stealing gowns, yes, you read that correctly, I've turned to a life of crime. I take my gown home sometimes, I bring them back everyday though and wear them again. I decided it was ridiculous for them to launder gowns that I had been wearing for five to ten minutes, so I've been taking them home with me and back again the next day, then I put them in the hamper every two or three days. I figure if everyone going to radiation does this we can get back a little bit of what our cancer treatments add to bio hazard landfills and toxins and medications in our environment. Who knew crime was a good thing.

In other exciting radiation therapy news, my young student therapist , Ben, has graduated to wearing a white coat like the other therapists, I'm glad for him, I hope he does well, other than the fact that he presses the tape onto my chest way too hard he was a good student, I'm not sure how he thought that tape was going to fly off while I was lying as still as possible, but who knows what could happen, a wind could pick up in there. I had originally had two therapists and then an extra student was added a few weeks in, it was crowded with three and a little awkward at times, but they made it work, now sometimes I only have him and the woman that appears to be in charge, I guess that makes her the lead therapist, her name is Lee, she's nice. Anyway I'm glad he's doing well and liking radiation therapy, so much cancer didn't scare him away.

think it over, what you've just said, think it over in your pretty little head

2010-06-16T06:28:00.003-05:00

When I see you and talk to you and you ask me how I am, the next thing you tell me should not be how your cousin/sister/friend/uncle died of cancer. I can guarantee that 99% of the time I really do not want to know.

And also a bonus tip for strangers, when you meet me for the first time and find out that I have cancer, do not offer to do things for me, most of the time I will never see you again and deep inside you know you won't do it. If in fact you genuinely want to do something for me, just do it, don't bother telling me to call you, because I probably never will.

disclaimer- I may have been angry when I wrote this and/or under the influence of cough medicine with codeine.

feeling good

2010-06-11T09:23:00.000-05:00

I wanted to write that I am feeling good. Radiation doesn't seem to bother me to much, either that or I'm really good at ignoring it. I guess I feel tired but not as much as with chemo and probably just as much as any other young mother. I actually feel nearly normal, I believe my menopause is going away, right now I get all the good stuff from making estrogen and none of the bad, I still haven't had my period since November but I'm sure its coming. I have only 10 treatments of radiation left and in about a month I go back to see my oncologist again, I will have blood tests to determine my estrogen production and then he and I will decide if I will have hormone therapy.

ribbons are for presents

2010-06-03T22:21:00.001-05:00

I am not a fan of pink ribbons, and I've never really liked pink at all. I own only a few pink ribboned articles, one is a visor that I bought for my daughter at least two years before I had cancer because who doesn't want to keep the sun out of their child's face and it was on clearance. I also have a pair of fuzzy socks which my mom gave me because she knows I like socks and because she's my mom. This sort of thing is more my style:

This is a cross stitch that I made

Recently though I have been liking the slogan "fight like a girl". While there is not so much fighting involved with having breast cancer (unless you count fighting the urge to throw up) as much as its mostly about recovering from the treatments, I still like it for its girl power. And so I got my self and my friend shirts with that printed on it, here is a photo of mine:

I don't know about tomorrow, I just live from day to day.

2010-05-31T22:19:00.000-05:00

Today we went on a cave tour and then had a picnic lunch with my parents and brother and sisters. Then this evening we had a little bonfire and roasted giant marshmallows.

My five year old had a really great time and she said to me as I was putting her to bed "every memorial day can we do something fun if no one is sick or hurt". I'm pretty sure when she says "no one is sick or hurt" she is referring to me being sick from chemo and surgery, although I did manage to do a lot during that time and tried to keep everything as normal as possible for her. I'm also very sure that the reason I was able to keep doing so much was my daughters, if I didn't have them here I wouldn't ever have gotten out of bed. If I didn't have my youngest I wouldn't have done any lifting two weeks after my mastectomy, she didn't really walk so much at that time and she had to be picked up, if I didn't have to lift her I don't think my arms would be as strong and have almost full range of motion.

So after she asked if we could do something fun every memorial day and I said yes then I thought about how I have no way of knowing whether or not I would be able to do something fun with her next memorial day or any other ones except today. It really made me think about how I need to try to make everyday matter for both my daughters and for me, just in case that's all there is.

Double standards

2010-05-28T14:48:00.000-05:00

The men that go to radiation don't change into gowns. When I go to radiation each day I see the same two men in the lobby, they sit there as the woman at the front desk says "Hello Robyn, go on in". I go into the door labeled "Women's Waiting Room" and get changed into a gown and then sit on the few chairs by the door (I always choose snowflake pattern gown, in case you were wondering). The Radiation Therapy clinic is not a very large place, so I've pretty much seen the whole thing, so one day I was wondering why these men don't ever go inside and realized there was no door for the men. I asked the technicians where the men's changing room is (in case there was a secret passage I needed to check out) and they told me that the men don't change, they just get undressed in the room where treatment is performed. Does this seem odd to anyone else? If you are a man would you feel bad about it? I just don't understand it, for the most part I wear the gown mainly to walk from the hallway to the treatment room and once I'm there its open in the front the whole time, how is this different from me just taking my shirt off when I get there? I've been thinking its perhaps because other women maybe still wear bras and maybe its more complicated to get undressed for women than men. Also I'm not even really sure why this bothers me so much.

On a side note, I asked the technicians about people that possibly have actual tattoos in the areas where they put their tiny dot tattoos and they told me they had only had that happen once (It was a unicorn tattoo) and they just put their dot right over the other tattoo and then took a photo to help remember where it is.

I will no longer wear a disappearing hairline or pajamas in the daytime

2010-05-20T13:36:00.001-05:00

I officially decided to retire my hats to a box in the closet, a couple months ago I donated a bunch back to the hospital, I am keeping only a few, mostly made especially for me by my good friend. I fully intend to never ever ever wear them again. I am also making a conscious effort to get dressed in actual clothes (no more changing into clean pajamas) before noon everyday, going to radiation at 6:50am helps a lot with this. I feel good most days now, I go for a walk each day and I rode my bike twice this week, 5 miles one day and 3.25 miles yesterday, the 5 miles was broken up in two rides but still I managed it. I've been pulling my trailer but with only my youngest daughter in it, so its not overly heavy. I have only joint pain and the port pain, not so much neuropathy and fatigue anymore. I know that I will perhaps get fatigue again from the radiation but for now I'm not worrying about it.

why wonder ?

2010-05-19T23:49:00.001-05:00

These are my ponderings of the day.

1. What type of surgery if any do transgender females have on their breasts when they (for lack of a better way to say it) "go all the way" in their quest to become male.

2. I'm wondering if I should get a tattoo on my left side that says starboard, and port side on my right where my port-a-cath is (are you laughing? this is where you laugh, slap your knees and say, oh port-side, I get it, I get it). Also because you are wondering, I do know that starboard is the right and port is the left but imagine that I am a ship and I am lying on my back, this way when you are standing on my chest facing my head (which is obviously the bow) then the terms are correct, so there.

3. If I were to have these elaborate starboard/port side tattoos on my sides, what would they do to line me up during radiation since they would cover where my tiny dot tattoos currently are?

So those are my random thoughts for today, feel free to add comments, questions, or your own musings for us all to enjoy.

I just want to get it over with

2010-05-16T00:22:00.002-05:00

I didn't write here last week, partly because I'm lazy and partly because I have been going to radiation in the mornings at 7:45, which means my time before the girls wake up is now my getting ready (and trying to look presentable) and leaving time and not so much my blogging time anymore. Also its because I decided to avoid having cancer (not the actual cancer, obviously that didn't work). I am going to pretend I don't have cancer and not ever talk about it, its working well for me except people keep asking me about it. Actually I'm working on acceptance, I'm working on not being afraid, and I'm working on being less angry about having cancer. No, scratch that, I like being angry, when I am angry nothing can hurt me. I think we'll keep angry for now and get rid of something else that I don't need, like kindness or generosity or something, who needs those.

So I've been going to radiation, its fairly uneventful. I go in, change into a gown, then go lay down with my arm up, they line me up with their laser lights and numbers, they put a weird flat rubbery plastic strip over my scar (alternating daily with an entire sheet of plastic which fits over the whole area), then I lie as still as possible while the machine moves in and does its thing, then it moves to a different angle and does its thing again and again for three angles. Then the technicians come back and I leave. The whole thing only takes five or ten minutes depending on how quickly they can line me up and get started. I've only been going for one week so I don't really have any effects from the radiation yet, although when I saw the radiation oncologist the other day he said he thought I would surely burn badly and to make sure I put my lotion on twice daily. That isn't really a surprise to me, I have been sunburnt in the sun for ten minutes and I've never had a tan.

I have had a port problem this last week, well, its not actually a problem, more like a pain, literally. It hurts, its not really ever hurt before, aside from a few days after I had it put in, or when my toddler bumps it with her head. I'm not sure why it hurts, I can't think if I've hurt that area on something, all around it is very tender and painful, its not red or hot or anything so it doesn't seem infected. I told my nurse at infusion about the pain and she looked at it and used it and it worked just fine, so she said to keep an eye on it. Hopefully it will just go away and not turn into anything more. I don't want it to have an issue and have to get it removed, I don't have any veins and its so much easier with it. I sort of feel as though perhaps its not a new pain but that I am suddenly more sensitive to pain, my joints and back have been hurting as well, especially my left leg and my wrists. I think somehow my pain threshold has lowered, either that or I am 90 years old and I don't know how I got here.

radiation planning

2010-05-06T20:28:00.000-05:00

Today I went for my radiation treatment planning, they had me lay on a plastic pillow filled with tiny foam balls and then they sucked all the air out to make a mold of me lying there. Then I got some stickers and wires and a CT scan so they can make sure not to radiate my heart and lung, or at least not too much, he said they are going to skim part of my lung but not my heart, this is because my margins were very close. Last I got four tiny pinpoint dot tattoos, one on each side of my abdomen, one in the center of my breast area and one in the top left, these are for lining me up the same way each time. So starting on Tuesday I get to be radiated each and every week day for seven weeks. I've been nervous about radiation ever since the beginning when they told me I would need it. It scares me because as we all have learned our whole lives, radiation = cancer. I know this is different and they've done years of studies and all that but its my cancer and I'll be nervous if I want to.

one of my tiny dot tattoos

hair today

2010-05-04T07:35:00.000-05:00

I'm pretty sure I stole that blog title from someone else or a salon. My hair is getting longer, long enough that my head is not so cold and I am starting to wear my hat less often. My hair (or lack there of) doesn't bother me and it doesn't appear to bother those people close to me. It did, however, seem to bother everyone at the store I went to yesterday, mistakenly without a hat. I sort of felt like instead of a hat I wore a sign that said "please stare at my hair, oh no its not obvious you are staring at all". People just seem to stare less when I have a hat. One thing that does bother me a little about my hair is the fuzzy part growing on the back of my neck, I need to enlist someone to shave my neck, someone who will not also shave curse words or gang signs onto the back of my head to be funny.

angry

2010-04-30T20:58:00.001-05:00

I've been so angry lately, and mean. If I've been mean to you I'm sorry, also if you feel like you were talking to me and I all of the sudden I wasn't listening, I'm sorry. I can't concentrate either. I've been especially angry towards my five year old and its not her fault. Something is wrong with me, something is making me angry and making it very hard to concentrate. I'm not sure if its the effects of chemo, herceptin, menopause, or just plain old having cancer but its not the real me, its not how I used to be. I feel like I used to be nice, at least a little bit more nice, or at the very least I could fake it. I also feel like I used to finish my tasks, without getting bored and moving on to something else. Its probably a good thing I don't have a job, or I'd get fired. I can't do anything for more than five minutes, I feel all over the place, I imagine this is how people with ADHD feel. I think it might be from not sleeping, I wake up tons at night. During the day I feel better now that I've finished chemo, I don't feel tired or sickly so much anymore. I think I need a day off, or half a day. Maybe I should go to a spa or something to calm down, people do that, right? That's what I think spas are for, I've never been to one.

Barbies and Neuropathy don't mix

2010-04-23T10:11:00.000-05:00

My neuropathy isn't too bad, some people have it a lot worse and it should slowly start to get better now that I'm finished with chemo, I just wanted to write about it. Most of the time it doesn't bother me, it seems worse in my feet when I walk a lot, then my feet feel sort of hot and tingly and really sore. Its sort of funny when I go to the doctor he asks how my neuropathy is and if it affects my ability to write a check or button clothes. Write a check!? I can't remember the last time I needed to write a check, he needs to find a new question. How about they ask how my neuropathy feels after I've gone to the zoo all day and walked and pushed a stroller, or how about after I've dressed and undressed 8 to 10 barbies. Maybe they could ask how it affects my ability to untangle necklaces and open plastic packages.

I'm so glad that my chemo is done, I can't wait to start feeling better, for the neuropathy to go away. Its been so nice out for the last few weeks we've been going for walks everyday again. I've biked a few times but not very far, I need to get out for more biking, its just harder to figure out what to do with the girls this year because I'm pretty sure I won't be able to pull both girls in the trailer, I'm not strong enough and they are bigger than last year. I'll get better, I just need to get out and try more often.

31

2010-04-19T07:59:00.000-05:00

Today is my birthday, I am 31, normally I don't care how old I am and most times I don't even remember, but this morning I got to thinking that this is not exactly how I would imagine spending my 30's. I imagined in my 30's that my kids would be old enough to take places and experience things but not so old that they don't want to go anywhere with their parents anymore, I thought we'd be doing fun things together and instead most of the time I get to be tired and watch them do fun things. I did not ever imagine that I would spend my 30's fighting breast cancer, I did not imagine that what would woke me up on my 31st birthday would be some serious hot flashes due to menopause, nor did I imagine continuing this chemically induced menopause for half of my 30's while taking tamoxifen or another clinical trial that my doctor recommends. I definitely did not imagine waking up and still being so tired after a night of doing nothing, a night in which I slept more than 9 hours and took a 3 hour nap the afternoon before, if I didn't have cancer maybe I would be tired from some actual partying.

My 12th and final Taxol treatment and what comes next

2010-04-16T07:02:00.000-05:00

Yesterday I had my last of 12 Taxol treatments, it feels great to be done!! I got a certificate for finishing my chemo from the infusion nurses. I'm excited to start feeling better in two to four weeks and gradually regaining the feeling in my fingers and toes.   I also saw my oncologist yesterday, he doesn't want to see me again until after I'm done with radiation unless I have problems or questions, during that time I will occasionally see the radiation oncologist so I see the point in not seeing two at once.   I start my every three week Herceptin next week, in my mind I felt like I would have three weeks off but the dosing is different so it makes sense to start it next week and then have three weeks off, Herceptin doesn't really have too many side effects the way chemo does so I should feel pretty well while on it, that three week schedule will last until Jan 2011.

I had a weird black spot on my chest at the end of one of my incisions, but my oncologist looked at it and he said he thinks its one of the stitches that remained and its just right under the skin, I really want to try and scratch it out but that's probably not advised, he said I should just show it to the surgeon and they can take care of it during any reconstruction I may have.

I was telling my five year old that I may have more surgery to get new breasts and she wanted to know if I was going to get jiggly ones, I told her we'll see, but really I hope for small perky ones that I can purchase bras for at regular stores, not like I had before. I used to have DD's and could never get anything cute or fancy like at victoria's secret, I'd have to go to the bali outlet or order online. I'm also excited that I will be able to wear any type of swimming suit, not special giant breast ones. I currently can't wear my old swimming suit so I got a tank top type one with a shelf bra in it, it will still be good to wear after reconstruction, I guess I shouldn't say any swimming suit because my belly and stretch marks prohibit me from wearing bikinis but one that fits any size breasts I mean. I feel like I am definitely leaning towards reconstruction that uses my own tissue from another part of my body, there are a few types called flap surgeries, where they open a flap and get the tissue out. I don't really think I want implants, if I can't do a flap surgery I may just have them remove the additional skin that they left for reconstruction and make it all flat, they can do that too, just to clean it up a bit.   We'll see, next week is my meeting with plastics.

I'm tired

2010-04-08T19:45:00.000-05:00

I'm tired of chemo, next week is my final weekly Taxol treatment, hooray!! I will still continue with Herceptin every three weeks until next January. But today I am tired, I'm tired of feeling like crap and being sore and I'm just plain tired. Next week I get to see my new oncologist again, I am actually excited to see him and excited for my last Taxol treatment, I should start to feel less sore a few weeks after the Taxol ends. I'm also tired of thinking, I'm thinking about reconstruction and radiation all the time and its getting old. I think this is why I had my bilateral mastectomy less than a week after I got my diagnosis, I can't wait for things because I think about them too much.

This weekend I am planning on resting, I say this all the time and I've yet to spend an entire day resting and doing nothing. Tomorrow my Mom will be taking my girls overnight like she usually does and I really am going to do absolutely nothing. If you see me going out somewhere you have permission to tie me up and drive me home. When I was a kid we used to go to this fair at a Catholic church whose name I can't remember and you could lock people in "jail", this is the type of thing I need, people could sign me up to be locked in resting jail.

I am looking forward for two to six weeks off from treatments before my radiation begins, sometime in there I might have some reconstructive surgery, I'm still undecided what to do about that, in two weeks I have a consult with a plastic surgeon and we'll see the options. I'm secretly hoping one of the options is a tummy tuck and laser hair removal on my legs and underarms in lieu of getting breasts :)

If you know where I put that pathology report, please let me know.

2010-03-27T10:09:00.000-05:00

So when I was at my appointment with my oncologist he said something about my cancer being estrogen positive and Her2/neu positive and what that would mean for me. This is a surprise to me, I knew about the her2/neu but I swear when I got my pathology report and it said progesterone positive and estrogen negative. He checked his computer again for me but it said estrogen positive. Ever since then I've been looking everywhere for that pathology report and I can't find it. When I see him again I am going to ask if he can check again, not just check his computer but maybe somewhere there might be another record of it because I know what I read and I know what I saw and I just can't believe I got it wrong.

My new Doctor

2010-03-25T18:22:00.006-05:00

John and I met with my new oncologist yesterday and he is very nice, he had a lot to ask and a lot to say and set me up with an appt to talk with the radiation oncologist today. I like him and I'm going to keep him. At the appt with the radiation oncologist Tree and I got to absorb a lot of information and I feel better about the radiation now. I'm glad that I got to talk to him so soon, both he and my regular oncologist think I should meet with the surgeon about reconstruction sooner than later, apparently radiation should be done within 6-8 weeks of me ending my chemo, 8 weeks being on the sort of late side. So if I can decide about reconstruction then I might have to do part of it before the radiation, which means time is not on my side for this. After I meet with the surgeon I will have a better understanding and need to decide about the reconstruction.

I also had an appt with physical therapy on tuesday for a slight bit of lymphedema that I am having on my left arm, she gave me a tight tube to wear for one week to see if it helps, when I go back next week then she will see about if I need to get a permanent sleeve, these are cool ones, Lymphedivas.com

This was a busy week for appts, and for getting a lot of information. But its been a good week, I'm happy with my oncologist switch.

Hodge Podge, for lack of a better title

2010-03-19T07:41:00.002-05:00

I got the results from my ultrasound and I don't have any gallstones, they said there was just some "sludge" in there. I haven't had that pain again, I only had it three times so maybe that was all. Apparently they didn't find anything else weird in there because I'm sure they would have said if they saw aliens or a tiny colony of mice.

I'm switching oncologists next week, so you should all be happy. I am too, I think the new guy will be nicer and explain things to me. Tree and I got to see him for a few minutes because she was hassling the nurse to get him to come out. It was good, he seemed nice and next week I have an actual appt with him to go over everything. I feel bad that I didn't like my other doctor but he didn't really seem to like me either.

I've had a cold/cough for about two or three weeks, the length of time is debatable because I've felt stuffed up since December, so its hard to say how long my new cold has been. But they did a chest xray and I don't have pneumonia, both my girls had pneumonia about three weeks ago. My new Dr. told me to take some antibiotics anyway and I started them yesterday and feel better already.

It was funny because the nurse asked if I had been around any sick people (as though I was going out of my way to avoid any), its really hard to avoid the tiny sick people that live in my house. So this is my question for others that have/had cancer, do you live your life differently by avoiding certain people or places. I really don't do anything differently, I have to go to preschool and I take my kids to play at gymnastics and indoor playgrounds (which I'm sure have the highest number of germs per capita). I drink my coffee and eat a lot of candy just like before, I haven't really changed anything except I try to drink a lot more water. It doesn't seem like avoiding places would help when my kids just bring all the germs home anyway.

Number 7 Taxol/Herceptin and abdominal ultrasound

2010-03-11T18:32:00.002-06:00

Today I had my seventh of twelve Taxol/Herceptin treatments, it was fine, Taxol is easier than Adriamycin, it doesn't make me sick at all. Taxol is causing me to have some joint pain and my finger nails are weak and I had to cut them super short. It also made all my eyebrows fall out, but my hair is growing a little, go figure. The Herceptin is no big deal at all, it is a targeted therapy so it only goes after cells with HER2/neu receptors, which is one of the types of cancer that I had. The targeted therapy has less side effects on the rest of my cells. Herceptin is just a pain because the treatment is for one one year and it can damage your heart but so far I have no signs of that. What mostly bothers me is the premeds, I hate that the benadryl makes me so tired and steroids make me eat like a bottomless pit. I asked if I could just not get premeds but I have to, they did allow me to have a half dose of the benadryl because it made me feel stupid and wonky.

Tree is back as my chemo partner (thanks Bethany for coming with me while she was unavailable), and we got to see my Dr. briefly today, I didn't have an appt with him but he came to see me about my abdominal pain. He said I should get an ultrasound and so I had one after my chemo infusion (I like to call it an infusion it makes it sound like a fancy tea). I haven't heard anything back about my ultrasound yet. The technologist had me wait in the room, she said "wait here while I go show my Dr what I found" then she came back and said I could go, so now I'm not sure if she actually "found" something or if that's just something they say. I should have asked but Tree wasn't in there with me, Tree is like that little voice in your head that tells you to do things but then she actually does them.

You have a pain in your what? and why the internet is a better doctor than my oncologist.

2010-03-05T05:47:00.002-06:00

So I have had a horrible pain twice, it is across my upper abdomen and then settles on my right side. This is a pain you do not want to have, its worse than appendicitis, worse than a mastectomy and worse than contractions, it is a constant relentless pain that does not feel better if you lay down on the bed or the floor or half on the bed and half on the floor, it does not feel better if you walk around frantically and swear. Its worse than appendicitis because with that you can curl into a fetal position and it feels slightly better, its worse than a bilateral mastectomy because they give you Percoset so that's obvious, its worse than having a baby because contractions are not constant and also because most times you signed up for that and knew for 9-10 mths that it was coming. (If you've had all these things and also something far worse I'm sorry I only based this on my personal experience.)

The first time I had it for about three hours and I was going to go to the ER. While waiting for my mom to come over I threw up and it felt better so I didn't go. The second time I had it I just waited and it lasted about 2 1/2 hours and then slowly went away. I had my appendix out in January so its not that. From my family and friends' experiences I feel like it is my gallbladder, when I tell them about my pain and they all say to me "that sounds like when I/or uncle Fred/or aunt Ginger had my/their gallbladder out".

I told my oncologist about my pain last week, he told me that pain that goes away isn't usually serious and just to wait and see, this irritates me. The second time I had the pain I called and told his nurse, who is very nice and I love her, she told him about my pain and then I heard nothing at all back from him. He irritates me more everytime I see him. A few weeks ago I wanted to talk about radiation and he wouldn't talk about it, he said to just concentrate on chemo now and we'll talk about radiation later. He also seems really busy and almost like he doesn't really care about what I have to say. It also bothers me to no end that he cannot talk to me and read my chart and type at the same time, and that he types with his two pointer fingers like my four year old, in all the years of medical school and practice he couldn't even learn to type and/or multitask, come on!! Another thing that bothers me probably has nothing to do with him and is just some kind of appointment protocol but I only see him every three weeks now even though I go for chemo every week, I understand that there would possibly be appts when I would have nothing to say but I would still like to see him just in case, and because then I could hassle him about my pain and talking about radiation.

So this is what the all knowing internet has told me about my pain. It is a pain in my biliary colic (which is a fancy term for the guts in the upper part of your abdomen) also that its most likely my gallbladder because the pain concentrates on my right side just below my ribs. It also told me to try not to eat fatty things because that's what aggravates gallbladders and that gallstones are most of the time not visible on a CT (I looked this up because I had a CT in January and was wondering if they could tell from that). The internet also said that if a stone blocks my bile duct then it could affect my liver function and I could turn yellow, which perhaps my Doctor would take seriously, maybe I should try that. It also told me countless things about gallbladder cancer, which isn't so far fetched now that I have breast cancer, so I had to check that out too. So why couldn't my oncologist have told me these things, the internet makes them seem so obvious, why were they not obvious to him?

what to wear to a chemo infusion and why cancer studies are crap

2010-02-12T08:12:00.002-06:00

Its really hard to dress for chemo. I have worn the same three or four things to chemo each time and I'm beginning to wonder if anyone notices, I always wear "house pants", these are the pants that are not really pajamas but perhaps shouldn't actually be worn outside the house. I want to be comfortable while I sit around for hours. I also always wear the same few shirts, I have a port in my chest and so I need to wear shirts that are v-neck or scoopy enough to pull down, this limits what I can wear. I also get hot so I like to wear cardigans in case I want to take my sweater off, once your hooked up through your shirt neck its hard to get undressed. I'm just hoping no one notices I always dress the same. Although I actually don't see a lot of the same people, my nurse is always the same but as far as patients I don't think I've ever seen the same ones. I always go on the same day at the same time so you'd think I would see the same people but everyone else must just go at random times. I take that back, I may have seen the woman-who-watches-tv-much-too-loudly more than once.

I'm not sure if my of you read cancer drug studies and clinical trials very often but if you do you may have noticed the same things about them. I honestly can't pretend I understand everything they have to say but these are the major flaws I find with the studies.

1. They never say the same things, percentages and life expectancy estimates vary from one to another which makes me wonder which one is more accurate or if none of them are.

2. Anecdotal experiences that I have read from other cancer victims and survivors are nothing like what anything says the experience with the drug will be like.

3. This is my least favorite of all. The studies show percentages of survivors after 5 or maybe 10 years, I understand that the highest chance of recurrence and secondary cancers are more likely to occur in the first five years but really would it kill them to check up on people after that? I am 30 years old and five years is nothing compared to the long time I expect to live.

I had a lot to say....but then my brain died..........

2010-02-06T11:19:00.002-06:00

So last night I was laying awake in bed and thought of all kinds of great things to write, but then I fell asleep and now its morning and I have forgotten everything. So that's my new chemo story for you, chemo not only kills cancer cells but brain cells as well (I have no scientific proof backing this up but it seems very real to me).

Waking up at night, that's not new, I've been getting hot flashes for awhile now, mostly at night, which is most annoying. They say this menopause could be temporary or permanent, I'm hoping for the latter so that I only have to do it once. Which brings me to the fact that after hot flashes you feel cold, so I am hereby renaming them hot & cold flashes, this is for the benefit of women everywhere who have not yet experienced menopause, so that they know what to expect.

I'm on Taxol and Herceptin now, its so much easier than before, I don't feel sick, I haven't even been taking my anti-nausea drugs this time. It makes me a little tired for about a day or two and later on after I've been on it awhile I may develop neuropathy, I might lose a few finger nails and toenails but we'll get to that when it happens. My hair grew back a tiny bit during my chemo sabbatical, its tiny and black and I also grew really funny, fuzzy, black oscar-the-grouch eyebrows as well, which are hilarious. The people I have asked about my eyebrows say they didn't notice until I pointed them out but I think they are just being nice.

Since I don't wear a wig I've often wondered if when people see me for the first time that they know I have cancer or if I just really like to wear hats, I've yet to ask random strangers what they think but I keep wondering and I'm this close to asking (picture me now holding my finger and thumb only centimeters apart). Also for those of you who wonder and always ask me, yes, American Cancer Society does give a free wig and, yes, I have chosen not to get it. Hats (or in particular the one hat I always wear despite having many) are easier for me and also I can take them off when I get really hot.

No chemo for you

2010-01-15T15:03:00.002-06:00

Well so far my new chemo treatment has been great because I haven't started it yet. Last week I was supposed to start it but I was still having fevers and then I had an abscess, so they held off on it. Yesterday I had an appointment to go and try again but I woke up in the night with pain in my belly and a fever, I tried to wait until 8am when I had my appointment with my oncologist but I couldn't make it and we went to the ER at Regions at 5am, they did a CT scan and x-ray and found that I had appendicitis. I had my appendix out yesterday around 1pm, I'm feeling alright, a little pain and they won't let me go home today because my white count is still high and did not go down as much as they hoped it would overnight. They will check it again after some antibiotics and see if maybe I can go home tomorrow. I called my oncologist and we are going to try for chemo again on the 28th. As much as I don't like being in the hospital I really have the nicest room, its in the new section and it is all for me, no roommates over here only private rooms. I also have a great view looking east over spaghetti junction towards downtown St Paul and the bluffs. (I'll post a picture if I can figure that out). Its also very nice to have someone bring you food for every meal and not have to worry about cooking it.

new year, new post

2010-01-02T11:07:00.001-06:00

I haven't written for a long time, I know I'm bad. I was very busy with the holidays and a few problems. I have been getting fevers off and on for awhile and they don't know why. Molly had chicken pox but she's over it and that didn't cause any problems for me because I've had it. I had a sinus infection but I think that's gone now, I was on antibiotics and had an allergic reaction, I have a horribly itchy rash all over my body and my hands got swollen, its getting better though and my hands can function again (hence the typing). I spent my new years eve in the ER for this rash/hand problem, it was a blast, we made it home by 10 but went to bed at 11, we also ate a nice dinner of weird frozen ham sandwich while we were there. Well enough of the problems, I have finished my four treatments of A/C chemo, its supposed to be the worst and now its done, yea! Next week I start my new treatments, taxol and herceptin, these are every week for 12 weeks and I'm not so excited about that. I'm afraid with it being every week I will be too sick to get anything done before I have to go back for another round. I'm also a little concerned because when I was in the ER my heart rate was high, it was average about 120, going up and down between 115 and 130, I'm not sure if this is from my chemo or not. I am going to call my oncologist on Monday and see if he might want me to have another heart scan because the herceptin is supposed to be bad for your heart.

Third Chemo

2009-12-06T20:36:00.002-06:00

I had my third chemo on Thursday. I feel good today, I'm hoping it lasts, it seems like I start to feel better on Sunday and then worse again on Monday. Maybe this time will be different. Only one more of this type of chemo left and then I get two weeks off before starting a different type every week. Lucky I get christmas week and new years week off. I'm not looking forward to the every week chemo, it lasts 12 weeks, so it seems like a long time. Its not supposed to be as bad, or I guess its just supposed to be different, feel different and have some other side effects. Its going to be a long time before everything is all done, after the 12 weeks of every week chemo then I get to go for immunotherapy every 3 weeks for nine months, then there is radiation after that. I'm hoping to be a normal person again in 2011. Sometime after I am normal again and recovered I want to go on a trip with just adults, some friends of mine have said they would go too, it should be fun and its something to look forward to. That and not feeling sick a lot.

second chemo and new haircut

2009-11-20T18:16:00.001-06:00

I had my second chemo yesterday, and it seems better than last time, I feel really tired tonight but not as sick as before. My hair started to fall out a lot when I would brush it and wash it so John just shaved it for me, its weird but not as weird as i thought it would be, its very cold though. It was especially cold in the shower if I wasn't under the water, a lot easier to dry off after though. I hoping with less things to do to get ready in the morning it might help me to remember to brush my teeth more often. If you check my flickr pics you can see my haircut process.

Stomach flu

2009-11-12T07:21:00.001-06:00

I am definitely not having a great week. My chemo and its after effects went well, better than I expected, I was just queasy and very tired all weekend. However now I have managed to get sick, the doctor thinks I got a stomach flu or something, which then as a result of me having chemo just a few days before is much worse and will take longer to get over. When I called the nurses they seemed like they didn't care, sure they'll issue prescriptions and tell you what to do but they don't actually seem to feel anything, perhaps something is lost over the phone.

Yesterday my friends stole my kids and I slept all day, I think that helped a lot. On Tuesday my Mom was able to come over before work and play with the kids and make me some jello, I think that jello kept me alive, it was all I could eat for two days. My Mom always knows what to make and what to do, someday I hope to be a Mom like that. Today is a little better, I ate some toast and gatorade just now, so we'll see how that goes.

At first when I got sick I thought it was still from the chemo, which would be horrible, now I am kind of glad that I am sick because it will mean a year of chemo and immunotherapy won't feel like a horrible stomach flu.

first chemo

2009-11-06T13:58:00.001-06:00

Yesterday I had my first Chemotherapy, to get it was like nothing, just sit and wait and then its done. I felt fine during the rest of the day yesterday but in the evening I was super tired after dinner and now I feel a little bit sick and like my body is super heavy, this seems fine for being systematically poisoned yesterday. Tonight and Tomorrow are expected to be the worst. The girls are going to stay at my parents tonight and we'll get them tomorrow sometime. I am trying to eat a few things here and there, mostly beverages. I seem to get pretty tired, I already slept a little bit today and probably will again this afternoon. I have to go back to region's to get a shot today.

Molly is a little bit sick, she had a fever but not really any other symptoms, unless crabbiness is one. She still eats and sleeps and seems fairly normal except a little additional crabbiness, so she should be fine.

scans and ports and all that

2009-10-28T20:47:00.003-05:00

My bone scan and CT scan both came back normal, so at this point no cancer has spread to far away parts of my body. This week I have zero appointments and I feel great, normal and fine. I am pretty much healed from my surgery and don't even notice unless I reach too far or when I am sleeping its hard to move around. I am getting sort of anxious to start my chemo because the longer I have to wait the more nervous I think I will become. I really feel like I need to have something to do at all times or else I will think about it too much. I was looking into what happens if you don't get chemo and what the odds are and all that, I think I just need it to get started so that I can not change my decision.

I got my port put in last Tuesday and it seems a little weird to have, it wasn't until afterwards when I realized they will eventually take it out again, that part seems worse than getting it in. I went to have a heart scan last week and they used my port, let me tell you it is way easier than getting an IV. It was a little bit strange feeling, but I think that's to be expected when things are directly injected into your superior vena cava. When I got my port installed I had local anesthesia and conscious sedation, I did fall asleep though because at one point I remember telling the surgeons that I had just had a dream where people were throwing balloons at me. The nurse that I had was named Roger, he kept coming and asking me how I was doing, I think he was also waking me up, I'm not sure if the waking me up was intentional though. In my mind I was only in surgery for about twenty minutes but my mom said it was about an hour and a half. My mom drove me to my port surgery and then I threw up in her car on the way home, but they gave me a sandwitch and all this food after my surgery so I don't think it was entirely my fault.

Molly turned one year old, yea Molly! She started to walk a little bit but she likes it best when its her idea and only when she really wants to. Molly seems fine with whomever takes care of her, she is adjusting to it well. She will never remember anything about me having cancer which is good.

I would also really like to thank everyone for the meals and cards and well wishes. Thank you all for your kindness.

How clean is really clean?

2009-10-19T21:17:00.001-05:00

So now I have a cold, and its fine, I'll just get over it. But it got me thinking again about how when I start my treatments they want us to keep the house really clean and avoid sick people and wash our hands 100 times a day. I think I wash my hands a lot already but alas, I still have a cold.

So I was thinking of having an off limits bathroom, we have three bathrooms and right now I use the main bathroom, John uses the master bathroom and Clare's is the downstairs bathroom. Lately so many people have been coming over and everyone uses the main bathroom so my strategy is that I move in the master bathroom with John and prohibit anyone else from using it and then I can avoid getting "extra germs".

It will be strange to share a bathroom with John, we haven't shared a bathroom for about nine years, we'll be like newlyweds.

I'm not sure how much help having a bathroom that no one else uses will be but if I get sick during my chemo and if my blood counts are low then I have to skip it and reschedule, which seems like a pain because I wouldn't know until I got there and then I'd have to wait and then the treatments would stretch out even longer. ugh............

Who doesn't love to be radioactive!!

2009-10-17T18:57:00.003-05:00

Last night Molly slept all night but that didn't keep John from being super crabby this morning. Whenever he gets crabby then I get crabby and then Clare gets crabby, its like a crabby illness going around, we are all over it now. My friends came over and brought me some candy so now we are all better. My Mom is here now and she took the girls to the park so John can vacuum and clean some things. I think this works better than someone cleaning for us. I should be able to clean soon, I picked Molly up again today. It works ok to pick her up when she is being cooperative, but if she struggles and flops herself around then I can't hold her cause she is too strong.

Yesterday I had a bone scan and CT scan, they were pretty boring. I got injected with radioactive isotopes again, which seems counterproductive when trying to fight cancer. The isotopes were for the bone scan. I got to drink barium too, it wasn't as bad as I thought, it was sort of like a milk shake gone wrong. It was smooth so that was better, I had imagined it being grainy and chalky. I think they should really warn you though that when you drink 30 ounces of barium it will eventually all come out, they didn't say anything about that, maybe that's something everyone should already know. She said that if I have to go back for CT scans after I start my chemo then they can give me a more kool-aid type drink, which sounds way better, I think they should offer that to everyone. Other than the barium, CT was not a big deal, except she wanted me to put my arms over my head which I can't do, so she just strapped them down instead. Bone scan was super boring, it took 20 minutes of laying completely still, right now I want you to lie down and rubber band your feet together and then not move at all for 20 minutes, go ahead, try it. I got super twitchy feeling I wanted to move so bad.

I got an IV for my scans. I'm going for a record number of IV's in one week, I think this was number four? When they took it out the guy put the traditional cotton and tape on it and we left (we had to go wait three hours for isotopes to spread over my body). So as we were walking my hand felt wet and I looked down and it was covered with blood, I had gushed blood out of my IV hole all over my sweater, arm and hand, surprisingly none got on the floor. We went back and they just wrapped it with more cotton and some fancy blue tape. I saved this tape, its so fancy and not sticky at all, I think they should always use it cause I'm tired of scraping sticky off myself. My mom says its called horse tape, or that's what she calls it because its used on horses' legs. The nurse said that gushing blood happens sometimes and its no big deal, but it was a little creepy.

I love nuclear medicine, its my new favorite department at the hospital. I love it because I think its funny how they bring those isotope injections out in a special fancy radioactive prohibiting case and how the syringe has a special metal case and then they just inject that shit into you and let you walk around freely, as if now you're safe because its inside you but up until that point they take every precaution not to let it get out.

Pain in the ass cancer complaints

2009-10-14T18:09:00.002-05:00

This morning John and I went to the cancer care center to meet with my oncologist, he seems nice, he has big grey eyebrows that need a trim. He had a student with him, he was nice also but super young. There is so much waiting and getting dressed and undressed at the doctor, its really annoying. I guess I had what they call a "large cancer" and also another insignificant one. The large cancer was 5.50 centimeters and apparently that's pretty huge as far as breast cancers go. It was also a very aggressive invasive type cancer and it is the cancer that spread into my lymph nodes, which they also removed. This is the cancer that warrants me having chemotherapy and immunotherapy and possibly radiation, this is also the cancer that will have moved around in my body if it wanted. The other cancer I had was a sort of type that stays in the same place and doesn't do so much, with that kind they just take it out and then you're done (if only both of them had been this type). So we talked about what happens next and I have to start chemo on November 5th, it will initially last for 8 weeks of one type of chemo and then change to 12 weeks of a different type of chemo and also immunotherapy at that time, then the chemo stops and the immunotherapy continues for awhile (I forgot how long, there was a lot to remember). All in all that lasts like a year or more and then there is some radiation at the very end. After we talked about that I got my "you have cancer" folder which contains a crapload of information from wigs and nail care to information sheets about the drugs I'll be on. Then they took my blood to check it for stuff, I'm not sure what stuff, I just got emailed about 20 test results so I'm assuming they just checked everything. When I talked to the oncologist this morning I asked him what kinds of things they would do to see if cancer travelled to vacation somewhere else in my body, he said we weren't going to do scans or MRI. But then his nurse called me this afternoon and said that after my blood test he wants to do a CT scan and a bone scan, both sound thrilling, and for one of them I get to drink barium, which sounds like a whole ton of fun. I'm not sure if him changing his mind about these scans after my blood test is bad, I guess something in my blood tests didn't come back the way he hoped. In a little bit I am going to weed through the test results and then look up the irregular one on the interweb.

So far today cancer has been a huge pain in the ass with appointments. Other than the appt I had today and the chemo starting on Nov 5th, I also "get" to go to chemotherapy class tomorrow afternoon, this somehow certifies me to get chemo, I am hoping to get college credit :) I also get to have the scans on Friday, which takes like 3-4 hours. Then I get to have a port-a-cath installed next Tuesday, this takes 4-5 hours. I get to have physical therapy, at sometime, I forgot when. And I get to have a heart scan that checks to see if my heart is healthy enough for them to try and ruin it with chemo and immunotherapy. Also for all of these tests I get to pay for parking at Region's which is somewhere between 3 and 8 dollars depending on how long you are there, they do sell a pack of five passes for 15 dollars so then its only 3 dollars no matter how long you are there, I think I will need about a hundred of these.

A weird thing happened to me today, when I was at the cancer center another woman saw me there (I didn't see her) and she wondered if I had breast cancer like her, she is also 30 like me and has breast cancer. She convinced the counselor to give me her name and phone number, he couldn't tell me anything else and he didn't tell her anything about me including my name. I'm not sure if I will call her, it seems like I could learn a lot from her but I'm not sure about calling someone just out of nowhere. John thinks I should, maybe I will, I'm debating it.

Post Op

2009-10-13T08:13:00.000-05:00

Today I go for my post op follow up appointment, I hope to get my drains removed today. For those of you that don't know, I have three surgical drains which we empty twice each day, they are super creepy and gross. John empties them for me, he doesn't think they are all that gross. I hope to get them out, we think they aren't having much fluid lately so that they can come out. Today we get the full pathology report which determines whether I get chemo or radiation or both. I also get scheduled an oncology appt so that we can go over what my treatment choices are.

My arms seem stronger, I can get shirts on over my head now and wash my own hair with a little bit of help. After I get my drains out I hope to be able to take a shower by myself. I tried to hold Molly by John putting her onto on my lap yesterday but she was too strong and wiggly. I also tried to pick her up but that didn't work and John was mad at me for trying.

I haven't been taking so much percocet, I am just taking it at night and using ibuprofen during the day. I think it makes me too tired and sick feeling.

I am just excited to go see if I can get the drains removed, that will make a huge difference.

At home

2009-10-10T08:55:00.001-05:00

Yesterday I came home from the hospital, I have better range of motion in my arms than I expected. My arms are very weak though. They say that I can start by lifting 1-2 lbs and slowly I can work my way up to picking up molly. I haven't tried to take a shower yet but they say that I can, I might be ready to try that tonight. Today my arms are even better than yesterday, so as long as I keep stretching them it shouldn't be too long before they move normally again. I got a bowl out of the cupboard today, that might not seem like a huge accomplishment but it was on the second shelf. My pain isn't so bad and percoset really helps me sleep, I hope to be off these pain pills by next week.

Clare is helping a lot and being very good, it helps that her friends came over and her Grandmas to keep her busy. Molly hasn't wanted me to pick her up, I was afraid she would cry a lot and follow me around to pick her. She's been doing well with John and others caring for her and she won't ever remember any of this. Clare might remember, she's only four so she might only remember a little bit.

Zero hour

2009-10-07T09:10:00.001-05:00

Well not exactly zero hour but they don't have free wifi in the operating room. Today I am nervous, its strange because I don't feel sick or anything, like if my leg broke or I couldn't breathe then it would make more sense to be going to have surgery, there would be a physical reason. We are leaving in about an hour. Last night I followed all the instructions, I took my shower with my special soap and clean towel and slept on clean sheets and wore clean pajamas, I need to take another shower with special soap and put on clean clothes this morning. I can't help but wonder what the risk difference is for someone that has a car accident and has to have surgery right away, without all the showers that they make you do, those people could be wearing hairspray and makeup and perfume. Do you think their risk of infection and fire is a lot greater than mine or just about the same, if anyone knows, please share?

Let's talk about our feelings

2009-10-06T08:15:00.003-05:00

Support groups.......are............not for me. Maybe they are right for some people but going to a conference room at a hospital or a church basement to talk to strangers isn't something I want to do. That could have been more harsh but I just got back from my "try to be nice to others" support group :)

Anyway lets be serious, you guys aren't strangers and I know you want to know how I feel.

Physically I feel fine, I feel the same way I did last week before I knew I had cancer (other than a big greenish bruise and two incisions from my biopsy). I did however lose nine pounds in the last five days, apparently finding out you have cancer is a great way to lose weight fast.

Emotionally I feel like a lot of things, its been five days since I found out about the cancer and on the sixth day I will have surgery. That's hard to think about and a lot to deal with in less than a week, so when I tell you I don't know what I am feeling and thinking its very true. I do feel scared and more nervous about the surgery as it gets closer. I've discovered that I want to know exactly step-by-step what will happen throughout the surgery (more that what the surgeon told me) and I want to look it up online but I also don't want to, I haven't decided if I will yet. Mostly I feel really really pissed off, I'm mad that I won't be able to lift Molly. I'm worried that it will be hard on Molly to not have me hold her and not have me feed her in the night (John has rarely gotten up with her and yes my 11 month old still eats a bottle in the night, feel free to judge me for that). I am scared that when they do my sentinel node biopsy during my surgery that they will find out my cancer has moved out into my body somewhere. I also feel like I can get this "fixed" and move on. Its a loop of feeling positive and then negative that I will probably go through for a long time.

Homemaking 101

2009-10-04T14:25:00.002-05:00

In the last few days I've come to realize that I have slowly over the last year become the one thing I never wanted to be, a homemaker (shudder), when I quit working September 2008 I did not and still do not want to be called a "housewife" or "homemaker". While I don't think I'd go so far as to say that while I am sick John will be microwaving our socks like Uncle Buck or have a Mr. Mom type day (who doesn't like John Hughes movies by the way), I really think its going to be a learning process for him because you know what, I do a lot of shit around here. A lot of things I am going to have to learn to let go, they won't get done and it won't matter, or things will get done but in a completely different way than I would have done it. He probably won't vacuum the kitchen every time the kids eat and molly might wear pajamas all day but as long as she gets clean diapers she'll be fine. So for the next two days it will be like homemaking boot camp for John, so that I can prepare him for what comes next.

i get knocked down but i get up again

2009-10-04T10:53:00.005-05:00

I've come to realize that I won't be doing nothing, that would be stupid and completely unacceptable to me. If I managed to have two babies, I can handle breast cancer. After you have a baby you go home with a big bloody wound and stitches, you have lifting restrictions, but you also have a baby, you get up and you do what you need to do for your baby and your body still manages to heal. This is what I did just one year ago, so I can do it again in a different way. To me right now the surgery seems like the worst part of having cancer. As far as the chemotherapy/radiation I know that I can throw up, I can lose my hair, I can be tired and still do everything I do now, I did it before when I was pregnant, I felt sick a lot, I threw up in the car and at work, I was tired all the time, I was a ridiculous shape and off balance, I had crutches for part of my pregnancy with Clare. So right now instead of having a baby I have a different sort of parasite to get rid of, sure this surgery is more complicated and more involved but I'm pretty sure they can't keep me from doing anything. At the end of it I don't get a baby/child but I already have those (let me tell you I don't need any more), instead I get to have two nice new perky boobs (maybe they'll even throw in a tummy tuck to get rid of my stretch marks).

doing nothing at all is a lot of work

2009-10-02T20:59:00.000-05:00

This evening I have started to prepare to do nothing after my surgery next week, its actually a lot of work. I am not sure what I will feel like after my surgery but they say I can't lift anything or do anything, its going to be very hard to do nothing. I just ordered a crapload of food and I bought diapers and wipes and paper plates to make the world go smoother for John. John can't prepare, or refuses to prepare, or is mentally incapable of knowing what needs to be done and when. I think this is why women get breast cancer most often, because men couldn't handle it and would just die (if you are a man, I'm sorry but you suck).

My thoughts on breast cancer awareness. Its kind of stupid. Ok, Ok, I was kidding. I think it never made me more aware. Honestly I never really thought about it much, I figured it happened to old people and people that had a family history. I also think the way that they put pink labels on any and all products that they can makes me want to throw up. Today at Target I purposely bought the fabric softener without the pink breast cancer label, take that downy.

My thoughts on breast cancer websites. I think there aren't very many good ones. I think that I am unable to find any website that will give advice to women with breast cancer and babies. What am I supposed to do with my baby? I can't not take care of her, how would that work? I will be here and she will be here and sometimes its possible that no one else will be here. I couldn't possibly be the first woman to get breast cancer before her baby is a year old, can I? I'm pretty sure they don't put anything about that in the what to expect in your baby's first year book.

Thinking of that I asked the doctor what it would mean for my daughters now that I have breast cancer and he said that I can get genetic testing to see if its a gene I carry and also they can get tested. I also asked him what it would mean for Molly if I had gotten this cancer while I was still pregnant, he said it would not affect her in any way because we were separate and her body would kill any cells (cancer or not) that belonged to me. He also said it was an interesting question, which leads me to believe that he hasn't seen many women with babies under one for breast cancer surgery.

how it all began

2009-10-02T13:58:00.001-05:00

It started at the beginning of September when I was in the shower washing, I found a lump close to my armpit. It seemed small and I looked online, I looked at websites that talked about cysts and how breasts change during your cycle and how only 20% of lumps are found to be cancer. This was reassuring, so I waited, I waited through my cycle to see if it had changed at all, it didn't. So I went to my family practice doctor, this was last week 9/24/09, she basically said yep, you have a lump, lets get a mammogram. The next day I went for a mammogram, the radiologist did not like what he saw so I immediately had an ultrasound, this is apparently when they can tell if you have fluid filled cysts which I did not. So I was sent to get a biopsy, I had a biopsy on 9/30/09. The biopsy said that I have breast cancer, so next week 10/7/09 I will be having a mastectomy (or two, technically).
So far the things I’ve come to realize are, its great that I have already had as many children as I wanted, and that doctors do not communicate well outside of their preferred partners. I have healthpartners insurance and they do fine within their healthpartners network but somehow fail to communicate with others. This is all fine now that I will solely being seeing specialists at Region’s Hospital (a healthpartners hospital).

What I hope to get out of this blog

2009-10-02T08:52:00.001-05:00

I guess I don't really know what I want to get out of a blog, maybe having other people read it then I won't have to talk about it so much. I guess I want you to read it, whomever you are.

I am sort of a runner-awayer. Everytime I go to the doctor I really just want to leave, I think there are too many sick people at the hospital and I feel like I am not one of them. I also feel like if I write it then I can read it and have more insight into my own thoughts.