Another one down. Only Two left. Yeah for cancer killing chemo. Yesterday I was sad and scared about my future. After saying I would not read any more of my medical reports at work, I broke down and read my PET scan and the two small areas on my liver can not be ruled out for metastatic disease. But Dr Hu said they didn't look like cancer and my lyphmnodes had only single cancer cells in them... so it should be negative. I guess if they go away with chemo or get bigger and change, then they are cancer. If they stay the same then who knows.

When will the worry stop...I keep thinking about the same conversations over and over again. Some days and events I can not recall.

It's 3am and I can't sleep for worry...

My hair is growing back and I have kept it a while longer because of switching treatments and should begin to fall out again this week. I am not buying a wig and if it wasn't so cold I wouldn't be wearing a hat. I forget all about the baldness and at work when I am wearing my scrub hat a few people have asked if they are going for surgery when I walk in... one patient had lung cancer and was scheduled for chemo the same day as me, we said we'd look out for each other in the "chairs".

Writing all my worries down makes me feel better. I try to remember I have now and not to think too far ahead. I will be forty in May. I am too young to die, my children need me and I don't want to leave them. I have no control over cancer it will do what it wants and when but I can control how I live with it. I am looking for that strength and peace.

Had a good sit down chat with the Dr Hu. My cancer could have been there for 1-2 years. But was there at least for 6-9 months prior to me finding it. I am a stage 2a. My highest risk for metastatic reoccurrence is up to 18 months to 3 years. Chemo increases my chance of survival by 10%. And the proteins from cancer cells found in my lymph nodes decreases my survivability. Diet plays no part in curing my cancer, other than alcohol which makes you gain weight and produce more oestrogen. "if it was that easy to cure cancer from food, we would already have a cure."

Taking a healthy diet improves my cardiac health. My WBC's are down to 3 and hgb is down to 10. So I know a lot.

So the information I was so afraid to ask answered. I can stop worrying about what the answers could be. And now deal with them.

Thank the Chemo Gods... What a difference. I could live with this Chemo. Seriously the last Taxotere treatment was the first time I thought I could die from this. I was very scared about the reaction and looking back I was so ill after the first treatment I know it was poison to my body.

I spent most of my teenage years with a hangover and that is how chemo feels. A bad hangover for a few days. Nauseated and very tired. When you wake up you just go back to sleep for 48-96 hours.

I am not strong, courageous or special in anyway because I am fighting cancer. I am the daughter and grand daughter of strong women and they died from cancer. They were strong because of the life they led before cancer. From them I learned to live strong without cancer. I don't want to be identified by having Cancer. Prior to this, cancer seemed so big now it seems so small. Kindness is big. Love is big. Cancer is small. Hate is small. I am the daughter and grand daughter of strong women that died from cancer. Surviving cancer does not measure strength or courage.

Good news today... I only have to take the new chemo for a total of 4 times. Celebrate having the drug reaction on 2nd treatment and not 3rd... now I have one less treatment. It's the middle of the night I have battled with nausea already but it seems to have passed after a few hours sleep. If I recall sleep helped last time.

More on the nausea, somehow since last week my insurance company decreased the amount of anti nausea medications I can receive. Odd. What changed in a week? I am now getting a chemotherapy that causes more nausea. However the insurance company medical director did an over ride and allowed my prescription to filled to 12 tablets and not the usual limit of 5. Now I have to get them to do the same for another medication. So I can get 30 and not 15.

The sad part for me is the other people who don't know the system and have no one on their side who knows how to help. Through +20 years in healthcare you learn the steps to question the system... working in the ER you learn whether it's worth questioning because your long term outcome doesn't change. When you are the patient you realise you don't know much at all and hope everyone is doing the right thing for you. But I am fortunate I don't have small children to care for or an elderly relative/spouse. I can take time from work to get over the worst part of the treatment. I cannot stop thinking how difficult this is for me but OMG I know I am lucky.

So the "Red Devil" is at work inside my body, with 5FU and Cytoxan. Someone from the Sisterhood I am now unfortunately a member of, recently went through this regime so with her honesty, kindness and knowledge she is guiding me through this. What would I do without her? When I post on FB or Blog I am also troubling her with my fear and questions. That Sisterhood is so strong and supportive may I gain the courage to be like the people before me that help me directly and indirectly. I have Survivors on my side and they are everywhere!

There are so many battles to fight when you have cancer and I hope to win many but ultimately I hope to win the war!

Chemotherapy on Thursday... a few days away. Very afraid... have no idea what is in store. I am hoping my first chemo was so bad because of the taxotere but that is supposed to be a kinder and milder chemo drug. But I can not stop hoping that it was so bad because my body didn't like that stuff, not that any chemo will be admired by my body. So I have Adriamycin and Cytoxen. Adriamycin can cause cardiac problems, which I am also hoping doesn't happen.

I know I am lucky not to have metastatic disease or a cancer which can not be cured but what if I am that 10% that doesn't survive.. that 5% which the chemo makes my heart fail. I try not the think "bad" thoughts.. because they might "jinx" me. I am afraid to think and complain about all of this.

The thought that I will recover but be broke, homeless, unemployable, uninsurable and afraid at every doctors appointment enters my mind but wondering about the future when I haven't won this fight yet seems like I'm being too sure about my outcome. So I ask myself what should I think. I decide not to think and just go through the motions of what is expected of me..

What a friggin' day... all went well with pre medication but not well with the chemotherapy , after just a few minutes of the Taxotere I started to feel very hot, head pounding, difficulty breathing, nausea and Chest pain. HR 145, BP good, O2 stats good. The nurse and NP stopped the Taxotere and ran in some Solumedrol, ativan and benadryl. By the time EMS arrived I was feeling nearly normal. Thank god I had a good friend with me to help. Never go for chemo alone!

I asked the nurse how much I got of the Chemo..." no chemo" today I am so angry and mad. Dr Hu came over to check on me and said my chemo would be changed and I will now get it next week.

So enter the unknown again... I am a very organised person trying to get everything settled with who picks up my kids, trying to work a fair schedule and keep my house cleaned...exercise and eat well... i just get things sorted and the something comes up. I think I will have to learn I can not plan past tomorrow. That's the best I can do!

Saturday is the day my hair started to get loose at the root... argh. Now EVERYONE will know I have something wrong. WTF.... It will take me a few days to get used to it then all will be fine with the world again. The past few days I totally forgot about the whole thing. I am hoping between each Chemo I will feel this good....well after the initial rough period.

I am ready to get the next Treatment over with... Move on and forward.

Today my family and I went to cut down our christmas tree... it was sad to wonder if it would be my last time doing this or how many more times would I be doing it... but forcing myself not to think that way and know I will live like I thought before.. forever.

Still feeling great. I feel the best I've felt since before any of this happened...Not on my soap box about anything... just glad to be here.

Feeling good... and pleased about people "feeling" their boobs or going for a Mammogram. Knowing your boobs is the answer... after I found my lump I never felt it again unless medical staff needed me to. If I didn't feel it maybe it would go away? It was hard for me not to suggest every person I know feel the lump so everyone knows what to feel for.. Anything to help anyone else to go through this or not go through this.

I saw my ob/gyn 4 weeks prior to my diagnosis and she felt nothing. So if you are like me and thought the doctor will find anything that is abnormal, think again. Because there is no way the doctor should not have felt that lump but she didn't. I don't blame her, I am not mad at her. I save that anger for myself. How stupid was I ? How did it get so big and I didn't feel it ? How did I let this happen?

I look at pictures of me during the summer and know it was there then...I looked so happy and carefree in the pictures. I had a great summer hiking, biking and camping with my husband. But I am spooked out to think of that thing growing in me.

I know the news media is full of mammogram reports and recommendations. There was also a report about women not doing self exams. I am unsure what to think about all the reports. I don't have the mental energy to think global. I can think about the women I know and know that some don't go for mammograms, don't feel their own boobs and are too young to worry about it happening to them. I am that person so what right do I have to tell the government/scientist/health plans/doctors/researchers what other women should do about mammograms when I did exactly what their research showed.

My future holds breast MRI's and mammograms galore. CT and PET scans. Because the government/scientist/health plans/doctors/researchers have many other studies and reports of what happens to me now. Reports I am not ready to read because like prior to all of this I was afraid to know.

One week out from chemo... that stuff is wicked and I am only on number one..still hurting for certain and nauseated this morning.. bring on the advil and zofran.

My mouth feels like...hmm I'm not sure how to begin. I'm sure words will come to me some other time. I will spend some time today looking for a mouth cure... I know the more I eat the more I taste. Hmm that sounds like a great thing for weight loss... I really don't care if I lose 20lbs or gain 50lbs during this. I will do everything just to get through chemo. I know I won't always want to eat buttered toast by the loaf and when the treatment is complete weight, food and my mouth will return to normal. I can do anything I choose but I know "my life" is not a choice it is a privilege.

Feeling almost normal...My stamina is a little low. I am very concerned about seeing the surgeon again today.. I am mad at her and sad about the situation. I usually know what will be happening and have planned my strategy of attack. Today I'm not sure what the hell will happen. Will she open the wound more, pack the wound or leave the wound. Will she stick a culture swab in there?

Will she tell me what a bad patient I was and look what I did to it? But you know I don't care about that...Shit happens and it did. It could always be worse.

My goal is to get through the Chemo and the wound is causing a distraction. Should I just have had the whole thing chopped off ?

Sunday evening... eaten dinner x3. All the bad should be over for this treatment. My incision is open and draining.. looking gross.. being my own nurse is not something I want to do over this wound. It grosses me out and feels weird.

My body and joints ache. And my open incision burns at times.

Missing my kids... grateful that they go to their dad each weekend. Hopefully they won't see me sick. Maybe I'm divorced from their father so they would never see me go through this. Maybe I moved to the states because surviving breast cancer is better than the UK. Trying to find the good in the bad with optimism, meaning and purpose...

Day ... who's counting. I feel very apprehensive about the day.. and scared to death about my next treatment. The night went by.. i slept and i worried about every ache and pain. My incision is open, sore and draining. My stomach is rumbling from the antibiotics.

Now it feels real. I felt totally catatonic.. my head still feels like I'm floating in space. I was so glad to see the sun shining through the window this morning. It was a long night. I feel so pathetic. This is my first treatment and I feel like I should be doing and running.. but I can hardly go to the bathroom. I would never wish this on anyone. I feel like a total failure. This too will pass. Why did I want chemo?... oh, to live.

One Chemo down... it all went well, I felt great all the way through. My port worked like a dream. Now waiting for side effects...

1. flushing on my chest and face this morning.

Still seems totally unreal. I wonder if it ever will?

So while in the shower I noticed blood draining from my breast...my incision is open about

3-5 mm and draining all old blood. Pressure was instantly relieved. I hope it doesn't stop my Chemotherapy tomorrow. So spending the evening in bed lying on my right side with the heating pad on and a kotex in my bra!

I will not let this get me down.. i know there will be worse to come. Fight on!!

I am tired of this breast cancer nonsense.

After going to work today I almost felt normal. Ohh I managed four hours. My neck is sore and my boob is beginning to look like it was butchered. I guess my topless beach days are over but I remember some of the sights on a European beach, the Costa del Sol is not Baywatch and I won't be pulling my top off at Clayton pool ever. So the scars, holes and oddity is between me, the mirror, my husband and anyone who practices their medicine on me. Maybe I can manipulate my back fat into the cup of my bra and no one will be the wiser.

I keep feeling twitching and pulsating in my neck above my port..it is driving me potty. It circles the front of my throat. Who thought this device could make me think about air embolism, stroke and sepsis. Oh I guess anyone who knows I'm a worrywart.

Chemotherapy starts on Thursday, my freezer and cupboards are full of lollipops, popsicles, ginger ale and other paraphernalia that I might need for nausea. I am not a good sick person. I always need hand holding, brow mopping and reassurance. I feel for everyone who encounters my self pitying whiney butt.

But tonight my mood is good and all is well in my world. My wish is yours is good too.

Port in the Chest

Yesterday was Port day, it went really well and super fast. I feel like someone punched me in the chest and trying to catch my breath is difficult. But I think that's just because I am aware of it. My son wanted to know why it was still in there. Max thought I would get chemo through it yesterday and then they would take it out... I think he's a little freaked out.

I spent most of the day crying.. while looking up my chemo meds on the computer I found an article regarding lyphm node biopsy results. I read that finding single cell cancer in the lymph nodes deceases my chance of five year survival by 50%. But I'll put that into context research shows that these single cells should be treated like positive lymph nodes with Chemo, radiation and hormones. Which was already Dr Hu's plan. It's comforting to know the man is up on the research but so scary to read.

So another day comes to an end. I can't wait for sleep because the mornings always seem better.

I will not read about Breast Cancer tomorrow...

The beginning of a new week.. and more breast cancer stories. Monday was PET scan day. I will call about my results Tuesday. Hmm.. that's a dreadful thing, calling and if they answer you wait while they open up the screen and read the result first before you get your answer. If they don't answer you leave a message and hope they call back so you know but don't want to know if it's bad news. ( But I didn't do any of that Dr Hu's nurse called me on Monday night. While holding my breathe she told me I did NOT have any metastatic disease. My husband guessed who and what was going on from my crying and my repetitive thank yous.

Monday after the scan I came home and started the billing issues... I am of sound mind and also had many issues with my daughter, so am very aware of mistakes made with billing, coding and insurance . It truly gives me a headache dealing with patient accounts and MHP... are they not ultimately the same company trying to make money? I am unsure how it works but know it is a waste of resources and just adding to my bills and health care premiums because talking with multiple people for hours about why I have a bill for $591.00 for a breast biopsy costs even more money.

Oh well that one is sorted there are at least 10 other bills to investigate. They are also coding some of my tests with " family Hx of breast cancer". Insurance won't pay for a PET scan with that code. If a person from my health insurance called and let me know what to expect and how to navigate around the billing that would really help me. I think I have a great idea and will open a consulting business.

Boob still hurting but is getting more squishy by the day. And naughty me ran yesterday(....shh don't tell my husband I told Jason things hurt today because the mean heartless PET tech made me put my arms over my head for the 20 minutes during the test.). But being outside on such a wonderful sunny day is just worth the pain. I don't get today to live again and I can never re-live a moment of my life. So I take this cool sunny November day to run outside feel the wind hitting my rosy cheeks and feel happy. All pain eventually ends.. just like bleeding ?

Dr Hu...

Yesterday was Jason's birthday and I used his lucky omen when I scheduled my appointment with my oncologist... I couldn't get any bad news on my husbands birthday? Dr Hu starts off talking about the tumour size which we know... then starts with my Lymph nodes... there are single cell cancer cells which show up on a stain ...this makes my prognosis worse. So he will treat as if they are positive and give me chemo. But the nodes are classed as negative. If I was 75 and not 39 I'd just get tamoxifen and radiation. I will be receiving 6 treatments 3 weeks apart. I start November 12th with Taxotere an Cytoxan. I have a Powerport placed on Tuesday. I have 3 abnormalities on my liver, a definite hemangioma and 2 small areas that do NOT look like typical cancer. I have a PET scan on Monday... but I don't know if I can cope with waiting and being told the result. Tests seem like another to give me bad news and I'm done with that.

Unless I'm having a direct intervention all of this seems totally unreal... but instant I put my identification wrist band on or I sit in a chair at the office I just want to close my ears, scream and hide. How the hell did this happen to me?

I thought I would get cancer due to my family history but not now... we all know being so young is not the best recipe for longevity. I see that look in faces.. The look I would give. Despair, sympathy and concern... the look of what to say. Can I smile, can I joke? How and if I should say something? I will be glad to have other things to talk about... right now all I can talk about is my breast cancer.

Liver

I knew it... my surgery site is too bruised. The excision of the lymph site looks great but the cancer site removal looks colourful and feels rock hard. "How did I bleed out?" Who cares , nothing I can do about it except watch for infection. It 's been like that since surgery and prior to my run on Saturday. Running 5km with a hematoma in my breast just made it more memorable. But it's getting so much better. Hopefully it won't delay my chemo.

The numbness under my arm is decreasing and burning sensation continues. My nipple feels like I've been out in minus 10F for a week.

I saw Dr S Westfall yesterday for results and follow up. I didn't tell her I'd been running but she thought the bleeding was probably due to how how close she was to my pectoral muscle. The tumour was 2.3x 1.7x 1.8cm, so it lost 3mm not 6mm. Lots of other jargon that on the whole is good. Dr Westfall said I was lucky, I already know that.

Yesterday I saw the oncology NP. I received my genetic test results, they were negative. There are 2 mutations they can check for at this time. We think I have a genetic factor because my grandmother, my father and mother all had cancer but the science is not there yet to find the mutation.

Yesterday I also asked the NP to review my results from all of my testing.... everything looked good except two areas on my liver that can not be ruled out for metastasis. O.K right then and there I knew I could never go for an appointment by myself again. I nearly passed out. Do you cry? Do you call a friend? What do you do? I was handed some Kleenex with a sincere pat on the arm. I told her just to give me a minute. I gathered my thoughts and put my nurse head on. But the NP was two steps a head of me, she was going to talk with Dr Hu. He is not concerned but will do a PET scan to make me feel better... I know how radiologist work they cover everything...I don't feel it in my liver, it just can't be there. My lymph nodes are negative except for the single cancer cells that mean nothing....If Dr Hu was concerned he would have ordered the PET scan after the result first came in, not when the patient freaks out. So the PET should be negative.

I am freaking out. I'm feeling nauseous and nervous all the time. And in total denial...

The NP committed to say I would be getting chemo and asked if I'd considered a port . Well if all I'm getting is 6-8 chemo treatments then maybe not. It seems like a waste of time for just a few treatments but who the heck knows what the future will bring. So bring on the port. My husband will need to take more time off work on the placement day. I didn't know whether to ask someone to take me.I hate to burden someone with sitting in surgery for half a day. My husband signed up for that when he said, "I do". But I think I will ask someone to come so Jason doesn't take more time off.

Next week I'm going for a short haircut. So I can slowly get used to looking at myself with no hair and I can control that loss. My husband is sad I'm cutting it. I think it's sad because I think I have control.

The Rest of the Tests

So I cancelled my trip and instead navigated my way around St John's Mercy Medical Center.

1. MRI of breasts showed the tumour in my right breast 2.6cm at it's widest. No Lymph nodes involved.

2. MRI of my brain... normal

3.Biopsy Results. Invasive ductal carcinoma intermediate grade.

4. Genetic blood work still pending.

5. CT Scan lungs, abdomen and pelvis...normal

6.Bone Scan ...normal

7. Biopsy showed the tumour was oestrogen and progesterone positive. HER2 negative.

Dr Westfall did a lumpectomy on the 15Th October with good margins and 4 lymph nodes were removed. Which were negative.

Originally the Breast Nurse Specialist staged my cancer at a stage one. Unfortunately my oncologist, Dr Hu staged it at a two because of the tumours size. My husband wondered why I was so upset about the change. A stage one is 100% survivable and a stage two is 85% survivable. I see Dr Hu again this week to review all of the results and make a plan. I am hoping 6mm on the biopsy was not cancer then I can be a stage one again.

I know that with the drop of a hat or the flip of a coin all of my test results could be so different.

One friend said I should celebrate all of the good news and I do because I know throughout this there will be bad/sad news too.

The beginning.

Saturday September the 26th I found a lump in the outer area of my right breast. My husband agreed that there was a lump. I was not at all worried because in 2005 I had the area investigated with Ultrasound because it was lumpy and hurting. Then they just said it was a fibrous ridge. So this time I was in two minds about even calling my doctor but I knew my husband would ask if I'd done something about it. So I called the doctor on the Monday morning. The assistant gave me a grilling and said she would call me back. So I had to go for a Mammogram on 30th. I was not worried or concerned and continued to think nothing of it...

On the 30th I went by myself for a mammogram, sat in a chair and the tech felt my lump placed a sticky marker over it and started to take pictures. Lots of pictures..... squeeze your boob until it will burst pictures of my right and only two light squeeze of the left. My radar was already going up. So then she announced we were off for ultrasound. Again she was very aggressive with getting images and then wondered that probe up into my armpit while asking if I'd had any pain or swelling there....fuck! that was it, I knew it was not good. Not just a lump but something else. The tech left telling me she might be back with the doctor.... but no doctor. I had something abnormal present, I needed a biopsy but not today because my insurance would need to pre certify one but I was going to talk with a breast speciality nurse. The nurse proceeded to tell me the doctor was suspicious about the lump. I wanted to know why? Was it the size, shape or the way it looked. Tell me the facts! I am not sure if she was clear enough for me or I was not really ready to hear what she said. So I left there for work with my biopsy scheduled for the next day, my trip to England/Ireland still in place knowing the biopsy results would be waiting for me when I returned to the States in two weeks. Off I go to work upset.. but what's new, freaking out about stuff in my life to a few people is a normal part of my life. I kept looking for the report in the data system at work and bingo while sitting in a quieter area of the ER with a few friends the results pop up. Scanning through it looking for key words I found them "invasive carcinoma". I quickly closed the screen and freaked. No one around me knew what was going on or what the hell I was talking about which again is nothing new for me. I popped the screen back open and let them read the report. Crying, shaking and shocked I questioned the MD next to me about all of the jargon written. The wonderful person that he is explained it all very clearly telling me the good and the bad, then said he was sorry. I left work early and went home, my husband left work early too, picked my kids up from school and we went to fly kites. This was the worst night, I cried for my kids, I cried for my mom and I cried for the burden this was going to be to my family for the rest of my life. I am not sure how I got out of bed the next morning to start this new life with cancer. How I made that first step I am not sure but I made them with the knowledge that I am committed to do everything I need to do to save my life. I will do it all with a smile. I will be honest, open and sometimes very sad that I have to do it. I know I will deal with what is in store for me but the thought leaving my children is always unbearable. My trip home was cancelled and I had no choice but to burden my family with the news of why I was not visiting. It is only 5 months since my mum died from cancer and I needed to convince them that my disease is different. That I am different. That hopefully the outcome will be different. But since my mothers death my family is sad and unable to except they all have different ways of coping with her death and their way is not the right way it's just "their way" and not to judge others. Bottom line we all miss her, we all love her and we are all still alive to appreciate her effect on us. She was a very non-judgemental and forgiving person. She dealt with a lot of shit. I am glad she is not alive to see me with this but so sad she is not alive. So the next day I got out of bed and started the process... of putting my cancer into remission or planning the end of my life?