Oh the sadness in waiting....

I had my first appointment today at the Hall Radiation center at Mercy. Dr. Merfeld is really nice, I will start radiation on Jan. 7 and end on Feb. 20. I have to go everyday, but it only takes about 15 minutes. While she was talking about the side effects, she mentioned that I have to wait a year after radiaion before I should get reconstruction. That crushed me. I'm getting married in less than a year and will either be forced to wear a dress that goes up to my neck or push the wedding even further back. Either way I guess the wedding will have to be pushed back because I need to stay on Title 19 because everything is covered. I'm not sure if Ed's insurance would cover recon. because it would be considered a pre-existing condition. Of course I didn't let it show if front of the doctor that it bothered me. She jokingly said 'no one will know if you're wearing a prosthesis or not, unless it falls out'. I was thinking how many wedding dresses have you seen that don't show cleavage? But anyway I understand that I am doing radiation to prevent the cancer from coming back, but I'm a stupid girl that has waited almost two years for her wedding, now I will have to wait another year and a half at least. The only plus side to all of this is the fact that I get to go to NC sooner.
I'm going to go off now..Here is a major reason why our country needs to change. I am one of the 43 million people that doesn't have heath insurance. Honestly, it's better to be poor and qualify for Title 19 when something major happens because at least then you know you'll have everything covered. How sad is it that major insurance carriers do not completely cover patients when they have something major happen to them? How sad is it that I know that I won't be covered for reconstruction, or possibly my after cancer medications, when I marry Ed because I have a pre-existing condition? Oh, I'm sorry I got breast cancer and didn't want to die. I'm sorry that the surgeon had to cut off my boob and that I want a new one so I can look good on my f***ing wedding day.
I am all for universal heathcare, I know that some employers are retarded have stupid rules regarding insurance, or they don't even offer it because they can't "afford" it. How is it that people are paying so much into thier insurance, and they think they are fully covered, yet when something major happens, they get stuck with the bill? When did this country forget how to save lives? I am one of the middle class that was one bad diagnosis away from losing everything and I did. I have to live with my parents, not only because Ed is gone, but because I can't afford to live on my own. Screw you if the only reason you don't want universal heathcare is because you don't want to pay higher taxes. I'm glad your employer pays 100% of your heath insurance, mind if I get added on? I know I shouldn't be complaining, I have Title 19, what about the people with kids that get ear infections every three months? They don't qualify for Title 19, and they need insurance too. Sorry for going off on this, but it really bugs me. I have to go massage my lymph adema swollen arm now, you get that after your lymph nodes are removed, you know when you have a mastectomy, to get rid of the breast cancer, the surgery that you can't afford....

last round of chemo..end of part one (or two)

Well, After 6 rounds of chemo I am finally finished! yay!. Downside? In three weeks I start 6 weeks of radiation, which consists of daily treatments (except on weekends). The chemotherapy put me into a pre-menopause state so i won't have my period for two years, that is a good thing exept that I could still get pregnant. My doctor is recommending that I do not get pregnant for the first 2 years and I will be on a drug that causes birth defects. I am okay with that since I wasn't planning on having kids till I was 30 anyway. There is a chance that I will not be able to have kids from the combined side effects of radiation and chemotherapy. My doctor thinks that because of my age I should be able to bounce right back, he jsut has to lay everything out there. In a couple of weeks I will get genetic testing done to see if I have the cancer gene. If I have it I may have to get my ovaries removed. Most women who die within the first five years of surviving breast cancer end up dyeing(spelling) from ovarian cancer. As of right now it doesn't look like I have ovarian cancer and my Doctor is pretty confident that I do not have the gene. If I don't have the gene my sister's won't have to be tested either, so I think that is good news for them as well. I really can't be 100% confident that I don't have the gene as the other doctor's were 99.99% sure I didn't have cancer, that is another reason I wanted to get tested. Also it turns out that Iowa sucks for plastic surgeons. I have to have reconstruction, but because I have to get radiation my skin loses it's elasticity and cannot put up with a "normal" breast implant. I have to get what is called a "Tram Flap", too hard to explain here. Apparrantly no one in Iowa does this procedure. On the plus side, Duke University does and it is only 50 miles from Ed and I can fly out there and he can take me. I have a consultation with a Plastic surgeon in Iowa to get his professional opinion, talk about cost since I have title 19 and not actual insurance. Anyway, thank you to all you tax payers out there for taking care of my Medicade(spelling). I would probably not be around if it weren't for you!!Missy

Ed's Back!

I had my second to last treatment last week, only one more to go! It was pretty rough this time. Ed is back this week for Thanksgiving and to get ready for his move to Greensboro. It's frustrating that I don't get to go with him, but I don't have too much longer to wait. On Tuesday the 20th there is an article running in the Cedar Rapids Gazette about young Iowans with cancer, there will be a little about me in there and probably a picture. Not too much is going on other than that, have a good Thanksgiving!

Nothing like a dislocation to wake you up in the morning..

I had my fourth chemo treatment last Wednesday, only two left! I now have to go in to my Oncologist's office once a week, to get blood drawn because my white blood cells were so low the last time. I feel good this time, it could be because they cut back on Adria (the red devil). That was the drug that I was hoping they would cut back on (Adria causes the upset stomach, low wbc's). Saturday night was Mindy's Halloween party, it was fun, I was Bellatrix from Harry Potter. If you don't know who that is, she appears mainly in the last three books. On Sunday, I slipped in the shower and dislocated my knee. For those of you who know me, this isn't an uncommon thing. Well, the falling in the shower is uncommon. I had a little mini melt down afterword. I think everything just built up to the point where it had to escape. I was on the phone with Ed and I just couldn't stop crying. I told him that my body is letting me down. Afterward I felt compelled to do something about it. Only, my stupid knee is swollen and I can't get around very well. Ed comes back the week of the 19th for a few days to get packed for the move to NC. I am excited to get out of Iowa and can't wait to be done with chemo. I still have not heard for sure if I will be getting radiation after chemo. I'm hoping that I will not need it and can proceed with reconstruction as soon as I am finished with chemo. I am hoping to be out of Iowa by March, if I could be gone by my birthday, that would be ideal. I just hope everything works out that way.

white blood cells and what they mean to me...

Last week I had my third chemo treatment, halfway done yay! The week started off crappy as I had a bit of a cold. So after my treatment, I just got worse. My doctor said that I just had a virus and the only thing that I could do is keep taking over the counter stuff. My mom ended up getting sick too and on Monday went in to a walk-in clinic. The doctor said that she had Bronchial Asthma(spelling), if she had waited longer she would have gotten pneumonia (spelling). So that freaked me out as I just kept getting more tired and feeling sick. On Tuesday I went into my Oncologist's office and got blood drawn. They still said that I had a virus and they can't do anything for me. My doctor did end up giving me some antibiotics as my white blood cell count was way low. He was worried that my cold might turn into something. He also kept saying "I think you will be fine". They are going to cut back on the chemo next time because my wbc's were so low. I don't know what that means, but that's okay with me. I felt like throwing up all day on Tuesday and have never felt more weak. I think I'll start saying Terrible Tuesday. Ed was back last weekend, it was great, except for the fact that I was sick the whole time. I think that is the best time for him to be here, though, because he was here to make me feel better. He won't be back now until Thanksgiving and only for a couple of days because he will be finished with training and moving to NC. Until next time...

Thank you

I just wanted to say THANK YOU to everyone who has left me comments on here. I know that I don't respond to everyone and I am sorry about that, there are just too many people. That sounds generic, I know, but I have a really slow computer right now and it would take days to try to respond to everyone. I just want everyone to know that all the well wishes, prayers and advice are read and taken to heart. They really do make me feel better and give me great support. With the whole thing I wrote about my parents, I wasn't trying to talk down about them at all, I understand what they are going through. I know that I should be more open about how I am coping with this whole thing, especially since I am living with them. But anyway, keep the comments coming!
Missy

worst day so far...

So, yesterday all day I felt like crap, which is typical for the Tuesday after chemo. I felt light headed all day and thought I was going to pass out. On top of that I am way stressed out because of my mom. Yes, I know she means well, but telling me every couple of hours that I need to eat more fruits and vegetables (when I am doing that) gets to me after a while. But anyway, around 2:00 AM I wake up with a fever of 101.8 and massive muscle aches all over. So I call my doctor and he says that I should be okay until the office opens up at 8 if I could be there by 7:45. Of course I forget to set my alarm and wake up to my nurse calling me at 8:30 asking me where I am. Luckily the fever is gone and this point and only the light headed feeling remains. So I get to the office by 10:00 (had to wait for a ride from my dad so I didn't pass out on the drive), they prick my finger for a blood sample and stick an IV in me to give me some fluids because they thought I might be dehydrated. When the blood work came back, my white blood cell count is good and I'm not dehydrated. So what is wrong with me? Apparently it is common for younger people when they take the drug Decadron (steroid to help prevent allergic reaction to chemo) they can get withdrawls. So they put me on a different steroid to kind of wean me off it. This will probably be what happens after every treatment now so it doesn't happen again. So, I am better now, I even got a little foot massage at the doctors office while they were putting the fluids in and it was fantastic!

By the way...my hair is now completely gone :(

Missy

I'm such a stupid girl...

I’m such a stupid girl
So yesterday I was running my hands through my hair (which is a cute/short/punky kinda cut now) and a good size chunk came with it. Now to me as a hairstylist it is a chunk, to you, it probably isn't because it didn't leave a bald spot. It was probably only 8 or 10 hairs but it freaked me out. I pulled at another part near my neck and this time, it was a nice chunk and I didn't really have to pull at it to make it come out. So my hair is starting to fall out. It really sucks because Ed is coming back in two days and I wanted to still look pretty when he gets here. I probably will, because I am going to be as gentle as I can. The way I style it helps to, because it's messy and easy to hide any bald spots that may show up.
Other than that I really haven't had any of the side effects that they talked about. The first few days I tired very easily and felt like I had a constant hangover. Last week I had a severe case of heartburn that turned out wasn't heartburn, but a side effect from the shot they gave me after chemo. It was pain from a build up of bone marrow in my chest. Sometimes the shot can cause that and they just happened to forget to tell me that when they gave it to me. The 12th is when I go in for another round of chemo, hopefully it will be as easy as last time. Keep your fingers crossed!

Missy

The Day After Chemo

So, today is the first day after my first chemo treatment. I haven't really had any of the horrible side effects that they talk about yet, I just feel like I have a really mild hangover. I can eat and hold everything down, just a little tired. I was at the Oncologists from 9:00 am until 3:15 pm, that was the only bad part. The type of treatment I am doing is called TAC (each letter stands for a chemo drug). The only drug that scared me a little was the Adriamycin which if they get the IV out of the vien while they are injecting it could possibly cause skin necrosis ( tissue death). Other than that I didn't really notice anything from the drugs. They said that I will probably start noticing my hair thinning with in two weeks, so I scheduled a haircut appointment for next week. I want to have a really cute short hair cut, since this will be the last haircut I will need in 6 months. Ed left last Saturday for training in Virginia Beach, it was a very emotional day for me, I still get a little choked up thinking that he isn't here. He calls me everynight to ask how I'm doing, really he sounds so lonely there. He will probably be back in a few weeks before he goes to the second round of training in DC. Most likely will only be back for a day. I will be going to Galena, IL with my sister and my niece this weekend, so unfortunately I will not be going to my class reunion ( I think I'm getting the better deal anyway as it's $25-$35 to go, plus pay bar, Galena is free). Sorry to anyone that thought I might be going. I just don't have the money to go as I go through this I'm not working. Well, that is all for now. I'll probably post another story next week when the side effects really start kicking in. Talk to you later.. Missy

Surgery results

I went to the surgeon today to get my drains out. Dr. Nielsen said that my cancer is at stage two because only two of my lymph nodes had cancer in them. So that is really good news. He also said that he doesn't think that I'll need radiation after chemotherapy because only two nodes had it. My appointment with Dr. Ghosh is next week to go over his plan for chemotherapy. Dr. Nielsen said that I should be able to get reconstruction in about six months. This is all really good news because that means that I can go to North Carolina sooner and be with Ed. Its going to be hard going through chemo without him, but I have my family and friends so I know I'll be okay.

home

hey,
just wanted to let you all know that i am home now. the surgery went well, i had to get all of my lymph nodes removed as there was a tumor in one of them so that sucked. i had a bone scan today to see if it there was cancer in my bones luckily that came back negative, so that is good news. just lying around now in a little bit of pain. recovery should take 2-3 weeks and then i'll start chemo. have a good weekend!
missy

Surgery

Well,...

I go into surgery on Wednesday morning at 11:00 for a total mastectomy/skin sparing procedure. This is my only option at this point as the MRI showed other spots in my right breast that could be cancerous, because of that a lumpectomy is not an option. My left breast was clear, so that is good news. They are going to do a procedure called a sentinal to take some lymph nodes and test them for the cancer. The MRI showed that there is one node that they are concerned about as it looks a little differently than it should. Tomorrow I have to go in for blood work and a chest x-ray. My surgeon said again that I will have to go through chemotherapy because of my age, he also said that they may also do localized radiation to the area. Until then, I'll keep you posted....

Life

Well guys, you wanted some updates so here we go. I found a lump in my right breast about three weeks ago, went through a few tests, including a biopsy. Got my results back on 7/18 which told me that I have Invasive Ductal Carcinoma grade 3. Which is based on size and means that it is pretty aggressive. Don't panic! I'm not too worried about it at this point.
I had a MRI yesterday (7/26) as suggested by my surgeon to give him a better picture of everything. Along with that, the head radiologist at St. Luke's had me get a mammogram today (7/27), just so I can have something to compare with in the future. Apparently my surgeon felt that one of my lymph nodes was inflamed when he examined me last Thursday, that was another reason he wanted to get an MRI. The MRI showed that a lymph node near the tumor looks a little different than it should, the mammogram confirmed that as well. I will hear from my surgeon sometime next week after he thoroughly looks at all of the pictures. Then he will, from that information suggest what surgery to do. At this point I am leaning more toward a Mastectomy and doing reconstruction. Dr. Nielson (my surgeon) is going to take the enlarged lymph node along with a few others when he does my surgery. I will know more information when I get in contact with him. Until then, thank you for your thoughts.

Missy