Tuesday, December 30, 2008

Welcome 2009!

As the holidays wind down and the New Year approaches I said I would stop using Pink Tulip as just my cancer blog and would start blogging about other things as well. It won’t all be personal stuff like where I went for dinner last night, my life is too boring. I’ll comment on things that tickle my fancy, issues that I think are interesting, breast cancer, my work and yes, I promise to share stories of all the adventures I have ahead of me!

I did want to say one last thing about breast cancer for those of you who will probably stop reading. Early detection is still the key to survival—this is true for all cancers but we can take charge of finding breast cancer. There are debates everywhere about the value of monthly exams, MRIs, and mammograms. First off, if you only do a breast exam every 6 months when you hear about another woman with breast cancer your chances of finding cancer are low, your chances of finding a lump are actually high. Ladies, get to know your girls! We all have lumps in our breasts, I have several cysts and benign growths in mine, once you know where they all are you can rule them out and just focus on anything new. But, if you find a lump for the first time or even after 2 years of breast exams go see a doctor. Remember, the lump that started this journey wasn’t cancer but because I went in to have it checked they found my cancer. If you chose not to do exams make sure you have regular mammograms! Again, know your girls and make sure your doctor does too. My prognosis is what it is because I took charge from the beginning. In the past 10 years the statistics for breast cancer are both saddening and fantastic. Ten years ago they predicted 1 out of 9 women would get breast cancer, today it’s 1 out 8 (that’s an increase of millions). But, the survival rate, the treatments and what they know has improved dramatically! I don’t know the new numbers since the proceedings from the most recent meetings still aren’t published but early detection is the key and the programs are helping.

If any of you ever even begin this journey after you call your significant other, parents and/or kids call me! I will talk you through the entire process, hold your hand during the biopsy if you need a hand (trust me, they can’t numb your aureole you’ll need someone to help you relax between punches), sit in the “bad waiting room” with you, ask the surgeon all the questions I forgot to ask and take you to and from the doctor. I had friends, family, strangers, and Ted to do this for me but it sometimes helps just to have someone who will sit there and can really and truly say “I know what you’re going through”.

I can’t begin to tell you all the emotions that I have associated with this journey. From the night we discovered the lump in my breast until the day of my biopsy when the radiologist said “I’m not so concerned about the first lump but I am very concerned about the second one” I really felt like this was just another false alarm and I was worrying for nothing. I kept saying it’s going to be okay, I know I’m just being a ninny and nothing is wrong. When the radiologist said what she said all I could think was not me, not now given everything that is going on in my personal life and who is going to take care of Tiger Lily. When she called me to let me know that I really did have cancer I felt like my world had finished crashing around me. One of the hardest things I had to do was to call my mother and tell her I had cancer. I can only imagine the emotions she felt. The roller coaster that was my life after the diagnosis until that day in August when my oncologist called to say no chemo was an eye opening experience into how to survive day to day. Most of you traveled that journey with me. By the time they removed the original lump in September I pretty much could have taken on anything. I am stronger than I thought possible.

I survived one hell of a summer and am ready to start living again; I have a lot of living to do too. We can only go forward, I don’t want my old life back (or the man I shared it with) and I want to experience all the things I put on hold over the years while I waited for Ted to want to share them with me. You could say I’m sort of like a butterfly that is breaking free of the bonds of her chrysalis and ready to spread her wings and fly. I will start with baby steps though……

Happy New Year

Friday, December 26, 2008

Planes, planes and more planes

So we made it home for Christmas but what an adventure getting here! We went to the airport on Monday and the first thing to greet us was a nice notice that our flight had been cancelled. After standing in line and dealing with the ticketing agents for 3 hours we finally got a flight out Tuesday morning but we were told we would have an 8 hour lay over in Pittsburgh! Needless to say, Tiger Lily wasn't happy. So, off we went, back to the house where we surprised the heck out of the house sitter.

Tuesday morning we took our short hop to Pittsburgh on a little commuter plane. Since I knew we had a long wait in Pittsburgh I let Tiger Lily wear her pjs on our flight and we didn't eat breakfast in DC. When we got to Pittsburgh and hopped on one of the moving sidewalks to find a bathroom, breakfast and look around we passed right by the "special" desk and there wasn't a line so we decided to go and ask if anyone could help us get where we wanted faster. There we met Santa Claus. He laughed and said if we didn't mind going through Las Vegas we could leave in 5 minutes and we would arrive in Phx at 1:30 that afternoon. Needless to say, we didn't get breakfast at the airport, Tiger Lily stayed in her pjs and I missed finding a bathroom until we got in the air on our way to Vegas. Tiger Lily just about yelled out "Vegas Baby" but refrained since she didn't want to scare the people sitting next to us.

We are safe and sound and happy as clams at my sister's house where we had a terrific Christmas. It's a blast to watch everyone open presents!

love, Tiger Lily and Pink Tulip

Saturday, December 20, 2008

Merry Christmas

Christmas is almost here and as usual I’m not even close to being ready. My Christmas cards will be late by the way. I did post a picture of the three of us here along with heartfelt Christmas wishes to all of you.

We will be spending Christmas with my family and enjoying the craziness that is my sister’s family (all 7 kids will be with her this year!). Tiger Lily is excited to see cousins that she hasn’t seen in almost three years!

As for news about me, well…I seem to be tolerating the tamoxifen okay so I guess it won’t be 5 years of “Is it hot in here?”. I’m now at the wait and see phase and I can hardly wait until my first mammogram so I can cross another milestone off!

Merry Christmas to everyone, may Santa bring you what you want and may you find peace.

Love to all.

Thursday, December 11, 2008

Nearing the end

Well, I have reached the point where I think my journey is near the end. I am officially cancer free and 5 years from now I can be officially a survivor (personally, I consider myself a survivor already). I am now on tamoxifen long term. My surgical scars have healed nicely and I am pretty much back to normal. I guess you could say I am now just coasting to the finish line. I will have my first mammogram 5 months from now, see my oncologist once a year and the surgeon every three months for the next couple of years. The standard of care for women with my diagnosis is mammograms every 6 months for 5 years but that should change at the Breast Cancer Meeting in San Antonio this week—the new standard will be once a year with more frequent follow up after the 5 year mark. Another change that may be on the horizon is longer estrogen receptor blocking therapy especially for pre menopausal women. After 5 years I will probably switch to another blocker until I hit menopause—there is some evidence that women become refractory to the original drug over time. Of course since tamoxifen causes forced menopause I just get to go through it for a decade longer…. Not a bad trade off in the end though.

I have so many people to thank along this journey especially those who sent me their support in so many ways. Most of you know that I am not one who prays, I made a covenant with God the day Tiger Lily was born, I only pray for her and you can guess what those prayers are. In return I promised God I would never ask for anything for myself, even on my worst days I couldn’t break it and I appreciate all of you who offered their prayers for me. For all of you, I appreciate just as much the letters, emails, comments, phone calls, hugs, thoughts and the “boy this just stinks” that came my way. There is no way I could have made this trip without you. There are so many of you that I would love to name here and say thank you but I also know that this is the blogsphere and well… I have a present for each and every one of you and hopefully after the Christmas rush it’ll be finished and on it’s way to you.

The one person who I will talk about is my Tiger Lily. I could never have survived this journey without her. She is my light, my reason to keep going on the days when I wanted to give up, the first person I think of in the morning (most days because she’s crawled into bed with me during the night and I have to move her arm to turn off the alarm clock), the person who cheered the loudest with me when my radiation was done, the person who said that it’s okay mom whenever we had McDonald’s again for dinner and the last person to kiss me at the end of the day. For those of you who know her, you understand when I say that I see so much in her eyes. For those of you who haven’t met her yet—well, you never know when the wild child and I will show up.

I read through this entire blog including all the comments the other day and I’m amazed at how far I came in such a short time. I smiled, laughed at some of the silly things and remembered how scared I was that day in June when the lump that started this whole journey was found. The serendipitous part of all of this was that that lump wasn’t even cancer, but if it hadn’t been found I would have never known about the cancer until much later. Thank you.

So, where to from here? Although this is a blog about my journey to survive breast cancer I have found that blogging isn’t such a bad thing after all. I’m going to continue to blog here but when the New Year starts this will become a blog to chronicle my journey to live after surviving one hell of a summer. I will occasionally still post about my breast cancer but I’ll also blog about life in general and how I’m using my second chance. Basically, if you want to read about my boring life, well here’s your chance. If you want to stop I understand perfectly. It will be uncensored and will contain some things that not everyone will like—if I ever decide to start dating I do promise to share the funny stories and I will continue to talk about all the fun things Tiger Lily and I do. In addition, I’m going to stop moderating the comments—if they get snarky though I will remove them so be warned. This way there can be more of chance for my family to talk freely with me and each other (if they read it anyways) without me having to answer an email every time.

Finally, thank you again. Those who sent me their sincere and heartfelt wishes, I love each and every one of you. As Tiger Lily says, dream of pink tulips tonight…..

Ciao with big hugs and kisses!

Thursday, November 20, 2008

Hello

Just checking in--I don't have any news. My oncologist appointment isn't until December 9, I guess I'm missing a few brain cells.

Feeling much better--still tired but I stay so busy with Tiger Lily these days I don't have time to think about it, I just go to bed really early every night. So far this week we've been to cooking class (Thanksgiving dinner this time), acting class (they have an agent coming in a few weeks to meet the kids--just to meet and great so don't get scared everyone, Hollywood isn't ready for her, not by a long shot), tonight is dinner at a friend's house and her group therapy, and tomorrow we're having a TGIF party at our house. Saturday night I'm going out with friends so by Sunday I'll probably be comatose...

I'm also trying to finish up three manuscripts at work and (hold your breath everyone) am applying for an assistant professor position at Notre Dame. I have always wanted to be a professor and I am going to start dreaming for me again since I have been given a second chance to live and do what I want to do. Besides, I can't afford tuition for Tiger Lily any other way....

Hope everyone is staying warm, it's been chilly for the past few days here--those 5:30 am dog walks just kill me.

Hugs and kisses.

Wednesday, November 12, 2008

I'm Done, I'm Done, I'm Done

So, first off: I apologize for not posting for a few weeks, we didn't have internet at the house and I hate to use my work computer to blog--something about misuse of government resources and all.....

I'm done with radiation!!!! It's been a whole week of not seeing my new friends in radiation oncology but I have to admit I don't really miss the radiation part. All in all, for my skin I was very lucky. Due to being so scrawny I didn't have a lot of the issues most women have with their skin during radiation--it got red (really red), very itchy, tender and scaly but I never had the really bad stuff that most women develop. I'm tired and have actually taken a few naps at my desk last week and this week. Nothing is worse than having the Chief of Urology show up at your office and you know that you have a big red mark across your forehead from where you had it resting on your arm though.... Guess I'm glad I didn't drool too.

I meet with the oncologist next week to start the next phase and will keep everyone posted on round III as soon as I know what it entails.

Tiger Lily and I had a blast celebrating the end of radiation--I took her out to lunch on my last day and then we went to the Cheetah Girls concert on Sunday! Lots of screaming girls but sooo worth it. I was so happy to be able to see the wild child spend two hours jumping up and down and singing all her favorite songs.

Please say a prayer for a friend in Virginia that recently had a traumatic head injury, he's a great guy and his recovery is still not 100% certain. He is a young man to admire given all he's faced during his life.

Hope everyone is enjoying the cool fall weather and is getting ready for the holidays!

Hugs and kisses to everyone.

Wednesday, October 22, 2008

10 more treatments!!!!!

I'm happy to say I'm getting close to the end! At the end of next week I will finish the radiation of my entire breast and will spend the last 5 sessions having focused radiation to the cavity where the cancer was removed. Studies have shown that any recurrence will more than likely show up in the site where the original tumor was so I get a little extra just to make sure everything is really really dead.

Today when I left my treatment there was another man waiting to come in--it's interesting cancer patients going through treatment belong a to sisterhood/brotherhood, you give each other an understanding nod and no one looks at you funny if you answer "how are you" with a tired, sick, really wish this itching would stop, will be glad when I get my iv out.... We all understand. The man waiting for his radiation treatment was a patient in much worse shape than I am and again all I can do is count my blessings. But, this is a fraternity no one ever asks to join and if that invitation comes in the mail you don't jump for joy that you got in. I'm glad I will get to be an alumni soon.

Tiger Lily had cooking class last night and had an absolute blast. She's asked for more classes and I'm happy to oblige. The school also has adult classes and the chef has a tail gating cooking class scheduled for November. That's one I will definitely sign up for, although NASCAR season is winding down it'll all start up again real soon!

The weather has finally turned cool and all my summer flowers froze so the guy in charge of routine yard work will have some work to do. We have an open house this weekend on Sunday from 1-5; most of the neighbors have said they'll stop by since they've always wanted to see what was done. It'll make my realtor happy anyways...

Hugs and kisses.

Wednesday, October 15, 2008

Just a quick hello

Just checking in to say hello.

I had my visit with my radiation oncology nurse today and I have officially gained a whole pound (I know, I know, I'm really not bragging, I'm actually unattractively thin). My PEO sisters and family must be feeding me well. The fun part is I now drink whole milk again (once you get used to it it really is sinfully good...), eat Ben and Jerry's ice cream before bed and always order the amazing chicken salad sandwiches at the Bethesda Country Store. Life is really going to stink when I hit my normal weight again.

I also found out my last day of radiation tentatively will be November 6th! November 7th will be a big day for me!!!! I can hardly wait to start the next leg of my journey and get to the 6 month cancer free part. Tiger Lily and I can now start to plan for some trips after Thanksgiving. I'm thinking I'd like to teach her to snow ski!

Here's Tiger Lily now: hi everyone i wanted to just pop in and say hello, well that was messed up, POP here i am! now that's better. tonight i made dinner, i made a kid qusine 4 dinner, and my moms friends are getting married. monday was my birthday, i turned 10 and i got a Wii. see ya soon.

Obviously, the cooking class I signed Tiger Lily up for will come in handy--she's going to learn how to make sushi!

I have another website to check out by the way: http://www.somuchmoreonline.com/, they have some really cute T-shirts!

A big shout out and even bigger hugs to my friends that announced their engagement!!!! We ran through the house screaming when we found out.

Hope everyone is enjoying the D.C. Indian Summer, have a great weekend.

Sunday, October 12, 2008

Halfway through round II

So, on Friday I was halfway through my radiation. Yippee!!!

The physical changes are becoming very very obvious, if I wear a shirt with even a scoop neck you can see. The interesting part is just how precise the radiation is, I have a rhombus on my chest that clearly shows where the radiation is being applied. I haven't described the process much but I realized yesterday when I went to get a massage and the therapist asked if I had any redness on my back from the radiation going through my body that I should.

Because of the dose of radiation I receive if the beam was focused above me like what you expect with an X-ray not only would I end up with a high dose to any remaining cancer but my heart and lungs would also be damaged. The radiation is instead given in a focused beam at two angles on either side of my breast. For the first dose the source is at about 2:00 and the window is very narrow. For the second dose the source is rotated to about 8:00 and a wedge is placed over the source to focus the radiation upward to just my breast. The treatment is basically 30 seconds for the first angle and 1 minute for the second angle. The second dose is longer since the cancer was located on the outside of my left breast. The hardest part of all of this is how isolated and alone you can sometimes feel--you're placed on a table, everybody leaves the room and you get to watch a machine rotate around you. It can be a little impersonal. They play music for you which is nice. Unfortunately the last patient of the day likes country music and for the first week no one changed out the CD before I came so I had to listen to the same Carrie Underwood song for a week, I finally put my foot down and said enough of that song.

As for the being tired part, it's started. About 2:00 I get a little tired and if I don't sit down and take a cat nap then at about 5:00 or so I start to feel like I have the flu--achy joints etc. so then I really do sit down and take it easy. Tiger Lily is starting to have to take over a few things which stinks for her but we both agreed that we are a team and for the next 6 weeks or so she gets to be the team captain. I am blessed to have some sisters that have volunteered to bring me meals for the next few weeks which means I won't have to eat mac and cheese or microwave popcorn for every meal. I think when this is all over I'll sign Tiger Lily up for cooking classes....

The really good news is that my house is finally on the market! It's not finished but close enough to get it out there. We're working on cleaning out the garage today. The pictures are up on the internet, http://www.homesbyaudrey.com/index.html, click on "our properties" and you'll see it. Trust me, you won't recognize parts of the house! Now that it's finally cleared out it's pretty easy to keep clean.

Hope everyone had a good weekend--Monday is Tiger Lily's birthday and I have several surprises in store for her!

ciao

Friday, October 3, 2008

2 Down 4 To Go!!

So, after rereading my post from last Friday I realized I sounded a little whiny which is never a way I would describe myself. I'm actually very happy to finally be at this stage!

2 weeks down!

I can't say enough nice things about the people in the Radiation Oncology Branch here. Everyone is so pleasant, works very hard to make sure I'm comfortable and they all figured out very quickly that I love the blanket warmer! I wish I could find one to keep at my house. I'm beginning to have some skin changes and am running a little low on energy (but it's Friday so....) but other than that this radiation stuff is nothing so far.

I'm looking forward to a fun weekend. We have a "white trash bash" on Saturday, Tiger Lily and I are planning on really getting into the theme of things. Ted hired a contractor to finish a lot of the little things on the house and I have spent just about every weekend for the past two months working on it so I'm officially taking a break. Hopefully, it will go on the market next week, I'll post the realtor's website so everyone can see the transformation. If you know of anybody looking for a house please pass along the info.

Hope everyone's weather is as nice as the weather is slated to be here this weekend.

Ciao

Friday, September 26, 2008

5 down, 25 more to go (or 1 down, 5 more to go)

I am now officially done with my first week of radiation!

The whole situation still is somewhat surreal and I've have several up and down days this week. This was never what I planned for and 6 months ago I never ever thought I'd be going through a divorce, being treated for breast cancer and working to get my house ready to sell. I do still count my blessings and appreciate all everyone has done so far.

So far just minor effects on my skin from the radiation, I'm told I should start looking pretty sunburned by next week. I'm tired but I'm not sure if that's from all the hours I've spent working on the house to get it ready or the radiation. Even Tiger Lily has reached the point where she's tired of spending every evening and all weekend working on the house. My goal is to get this off my plate before the effects from the radiation start to drag me down so I can focus on getting rest and healing (and eating a few biscuits!).

Have a good weekend everyone and enjoy the rain.

Monday, September 22, 2008

First Treatment

So today was my first radiation treatment!

Last Friday they put me on the table and took measurements and several films so they can track progress and ensure the treatment is reaching all the areas of my breast. I also got tattooed! Four small dots, one on each side, one in the center of my sternum and one in my nipple (that one HURT!). I'm now cured of ever even remotely considering getting a tattoo.

The treatment itself actually only takes a few minutes, the time to set up and position me on the table takes up most of the half hour for my appointment. I don't feel any different yet which is, of course, a good thing.

I spent all of my weekend working on the house and I have to give a big thank you to my friends that stopped by to help. Especially E! If you want to know the definition of what a true friend is it's her. She has been there for me every step of the way since that first weekend in May when my life started going topsy turvy. I only hope that I can be there for her in the same capacity whenever she needs me (of course I hope she never has to go through breast cancer though!).

Ciao!

Thursday, September 18, 2008

Getting ready to start Round II

So, I had a radiation simulation yesterday along with a CT scan. I have a lovely green box drawn around most of the left side of my chest... The radiation oncologists will review my scan and I have one more simulation on Friday to make sure everything lines up correctly. I will also get tattooed for my reference points. Tiger Lily thinks it's funny that her anti-tattoo mom is now going to have to get some because of my cancer. I get to start radiation on Monday, the treatment plan will consist of 6 weeks of radiation 5 days a week for pretty much the entire left breast. At the end I will get a boost to the site where they removed the cancer and then I will get to start tamoxifen. According to the oncologist I shouldn't feel the effects of the radiation until around week 4 or so and it will last for about 4 weeks after it stops since the dose effect is cumulative--so I should be up and back to my normal self by Thanksgiving.

On more fun news, we are getting very close to being ready to put the house up for sale next week. My realtor is taking a class on how to stage houses to get them ready to sell and the class came yesterday and used my house to learn on. Although it doesn't look like my house anymore it does look good. I have a long list of things to do before next week but we're really getting there now. I will probably spend the whole weekend cleaning, moving furniture out and painting so if anyone is just horribly bored drop on by and I'll put you to work!

Have a good rest of the week!

Sunday, September 14, 2008

i was suprised

So, yesterday was my birthday and Tiger Lily threw me a surprise party! That was the reason why I had to be out of the house for part of the day. She is truly the most amazing child any mother could have. It was so nice to see friends that stopped by throughout the afternoon and the evening. It was a great birthday.


So the month of October, as everyone knows, is breast cancer awareness month and I warned all of you that I would be doing a lot of walks and the first one is The Walk for Hope on Sunday, October 12. The walk will be at Cabin John Regional Park in Potomac. The website to sign up for it is: www.walk4hope.org/dc I will still be early enough in my radiation to have lots of energy and will be doing the 4K walk (less than 3 miles...). Tiger Lily is designing a t-shirt logo and once we have several designs I'll go ahead and post them so everyone can vote!


Hope everyone had a great weekend.

Thursday, September 11, 2008

More Good News

So, the rollercoaster of my journey continues with its ups and downs. The lump that was removed on Monday was benign, truly a fibroadenoma so the news is still good. In hindsight, given everything that is and was present I probably should have just sacrificed the breast from the begining but knowing that Ted would soon be leaving and that I would be dating again someday probably clouded my judgement.

The plan is to start radiation as soon as the incision site heals and the swelling goes down. Luckily, this won't take long and I hope to start late next week or early the following.

This Saturday is my birthday and Tiger Lily has requested that I go out to lunch and shopping while she cleans the house for me. If anyone is interested in seeing the excellent job I know she will do please feel free to stop by Saturday afternoon. She is also planning a special lunch for the two of us on Sunday.

Have a good rest of the week and weekend.

Thursday, September 4, 2008

When it rains it pours

Well, I met with the radiation oncologist today and it was sort of a good news/bad news situation. First off, my radiation treatments can be done here, the side effects are general fatigue and some burning of the skin. Long term effects include increased risk of heart disease since it was my left breast. I'm just happy that I won't have to lose so much work time.

Now for the bad news, the original lump that was found back in June was never removed--it is still unclear why not or even if it was ever biopsied. I had an ultrasound performed and the radiologist and surgeon both felt that is was a fibroadenoma (but on the original ultrasound the radiologist felt one of the masses was a fibroadenoma and the biopsy proved otherwise) so the bottom line is, I am having an excisional biopsy/lumpectomy on Monday morning to remove the original lump that started this whole journey. Once the pathology is done we'll know what else I'm dealing with. I guess you could say I've gone full circle--I just feel like I spun my wheels a little in the past few months.

So, needless to say, I'm encouraged that I'm getting to start moving forward onto another part of my journey but I'm discouraged that it'll be delayed a little bit. Since they aren't taking any lymphnodes my recovery should be a little shorter.

I'm off to Richmond for another race (Hanna may change my plans) where I'll get to see some family and good friends. Tiger Lily will be spending her first weekend with her father and she is excited to spend some time with him. I'll keep everyone posted.

Thursday, August 28, 2008

have a good Labor Day weekend

Just wanted to say hope everyone has a great weekend.

We are working on the house and hosting a few parties. Tiger Lily has invited 8 of her best friends for a slumber party (I had a really weak moment) and my Post-Bac IRTA (fellow) got a movie deal and leaves next week so we are having a cookout Monday at the house.


No big news, I have a consult with a radiation oncologist next week--waaayy too many doctors if you ask me.


Remember to relax this weekend and enjoy the end of summer (and put away those white shoes little sister, even if you do live in AZ...).

Monday, August 25, 2008

Finally

So, not only did Tiger Lily and I have a blast at Bristol (and my driver came in 3rd) but I got the phone call from my oncologist.

My Recurrence Score is 8, for reference under 18 is considered low. My chances of having metastatic disease is around 6% which is pretty much where it was when I reported after my surgery (the test does not predict whether or not I will have breast cancer again just metastatic disease). The recommendation is radiation followed by tamoxifen for 5 years so NO CHEMO!!! A big cheer went up at our tail gate, my parents house, my sister's office and my laboratory on that announcement.

I talked to another oncologist who pretty much echoed what the first one said, he did say that if I looked around hard enough I could probably find an oncologist that would be happy to give me chemo but that in his opinion it would be a waste of time. He did recommend agressive follow up though so I will get to know the people who do my mamograms really well....

I don't know when my radiation will start, we are trying to negotiate for me to have it done at work so I don't have to leave everyday and deal with parking etc. It would be a nice luxury but I'm happy to do all the driving just to be able to start ASAP.

Hope everyone has a great week!

Wednesday, August 20, 2008

weekend plans

I just love it when things work out: Tiger Lily and I are off to the NASCAR race in Bristol today. She has always wanted to go and I was offered tickets at the last minute so I decided to seize the moment (or is it live for the moment?) and off we go. I figured I could sit around here and wait for the results or take the phone call (if it comes) while enjoying my daughter and obviously you can tell which choice won.

Hope everyone has a great weekend, luckily Fay turned southwest and we don't have to worry about rain!

Monday, August 18, 2008

Still waiting

Still nothing new to report--the company that does the genetic testing received my samples last Thursday and said it will take about 10-14 days from there before they will have results. Of course, the whole process for isolating the RNA, doing the PCR and analyzing the results in reality takes less than 2 days (I'm being generous here, my lab easily could do it in a day) but I am learning the meaning of the word patience.



I have gotten the name of another oncologist and will be getting a second opinion on my treatment. Although the oncologist I visited is one of the best in the DC area I am hesitant to base my treatment options on a cohort study of 700 patients. I am now a single parent and I need to make my decision knowing that I have to think about her and our future--I would hate to have to live through this again knowing that chemotherapy might have prevented it.



The swelling in my breast is finally going down and it is beginning to become very obvious that a woman with small breasts that has a 4.5 x 3.9 x 1.5 cm chunk cut out looks a little bit uneven. The incision runs along the entire left side but it is healing nicely. My lymph node site is still uncomfortable and I can usually feel pulling and stinging when I over do, I'm glad they only took one node!



I am on vacation this entire week, Tiger Lily and I are going to have some fun before school starts. I'm still living week to week but I know this week I have no doctor appointments or treatments planned so we're going to explore the DC area. Today we are off to the zoo to see the cheetahs and the pandas.



Have a great week.

Wednesday, August 13, 2008

Just saying hello

Just checking in to let everyone know I'm still in a holding pattern with regards to what my treatment is. I still have my fingers crossed that my recurrence score will be low and I will just have radiation. The hardest part of all of this is that I have to live my life in two week blocks which is frustrating for a person who likes to plan for months in advance.

As for my personal life, I have already started the healing process and I can now begin to exclusively think about curing my cancer. I am focusing on eating healthy, gaining weight (yes, I'm down to a size 2 again), getting my rest and taking care of Tiger Lily (she has had a few rough nights but she knows she is loved). I have a very important person to live and heal for.

As always, thank you to everyone for all the support, love and encouragement. I don't always feel like the amazing, strong, brave woman you all label me as but it feels good to think it.

Sunday, August 10, 2008

More about me

So, although this posting has nothing to do with breast cancer I did want to also let everyone know about some thing else that is going on in my life.

Most of you that have been around Ted and I for the past few years know that our marriage has been strained. In the spring Ted decided that he no longer wanted to be married to me and was ready to move on. He said that we had simply drifted apart and our friends and interests were just too different. I was utterly devastated by his decision. He agreed to stay in the house until August to finish it so I can sell it and move on. When I was diagnosed with breast cancer after some very hard discussions Ted said that he was would stay until I finished my treatments and help Tiger Lily and I through this.

I realized last weekend while I was in Iowa that when I asked him to put on hold the new life he had already started to live before I was diagnosed with cancer that this was something that was unfair to both of us. Although he has been supportive throughout this I can not continue to hope that things are different than what they are and so last week he moved in with his friend's father. We are now attempting to maintain a friendship after 20 years of marriage so that Tiger Lily knows how much she is loved. He has promised to help me through my treatments even though he won't be living with us and that he really will finish the house this fall. I believe him which is why the decision for him to leave, although difficult, was a necessary one so I can also begin to heal my soul.

Please understand that this is a very painful time for me and I apologize ahead of time if I don't answer phone calls or emails but I will heal and I will also survive this.

Friday, August 8, 2008

Doctor's visits

Long day for me today, but I did learn one very important lesson. When the doctor calls and all she says is "the margins were clear" you should ask a few more questions. I simply assumed that the original diagnosis of Grade 1, Stage 1 hadn't changed. Well--as I learned at the oncologist's office today my tumor was Grade 2, Stage 1.

Stage 1 simply means that the tumor has not spread to the lymph nodes. Research is begining to show that looking at lymph nodes may not be the best indicator of whether or not breast cancer is not going to spread to other organs.

For reference: Grade 1 cancer means that the cells still for the most part look like the original cells (duct cells in this case) they can still carry out some of the original functions and their growth is slow and somewhat controlled--sometimes this is called well differentiated. Grade 2 cancer means that the cells are beginning to lose the appearance of the original duct cells, they tend to grow quicker and they begin to not respond to growth control--these cells are moderately differentiated. Grade 3 means that cells have resorted to an almost primitive cell and these cancers tend to grow quickly and are more aggressive--they are called poorly differentiated.

The other thing that I never asked was how big the tumor was which plays a role in how patients are treated. It turns out that the there were several small tumors and a large tumor that was around 1.5cm.

When you plug in the grade and size of my cancer in the old treatment algorithm I would automatically receive chemotherapy since my chance of recurrence would be greater than 25%. Research in Europe and here in the States is beginning to showing that not all patients with greater than 1 cm, Grade 2 ductal carcinomas (breast cancer) need to be treated with chemotherapy and therefore the school of thought is to look more closely at the genetic profile of the tumors before automatically giving chemo. That's where the OncoType test that I talked about last week comes in. This test will give a chance of recurrence based on the genetic profile of my tumor and a low score means that I have about a 5% chance of having a recurrence in another organ (metastasis which means mortality) after radiation and 5yrs of tamoxifen. The test has about a 2 week turn around and after I get the results I will know whether or not I need chemo. Intermediate and high scores mean I will have at least 4 rounds of chemo (which means I might as well throw away my flat iron since my hair will come back even curlier).

So, the bottom line is I still don't know what is going to happen in the next few months but I'm keeping my fingers crossed that I get a low score and only have to undergo radiation and tamoxifen.

The surgeon loved how my incisions looked and is very happy with my recovery. For the most part I've reached the point where it's just uncomfortable when Tiger Lily hugs me really hard.

So, not the best news today but I still have hope that news will be good in the end.

Stay tuned and have a great weekend.

Tuesday, August 5, 2008

just checking in

Hi all, I'm back from Iowa and seeing Tiger Lily. We had a great time and I'm really glad I went to see her.

Nothing new to report, just waiting for Friday when I get to spend most of the day visiting doctors--yippee.

Have a good week.

Friday, August 1, 2008

science

I apologize for throwing out a few terms yesterday and not explaining. I am so used to speaking in code that sometimes I forget that not everyone has my codebook.

The screening that will be done on my tumor samples is called OncoType testing and the study I will be enrolled in is actually called the Tailor X study. There are full descriptions of both on the web through Google.

PCR is just a procedure used by scientists who want to look at what genes are expressed. Most people know about it from CSI since it is also used to determine if the suspect is really the suspect from samples they collect (such as hair or skin or blood). PCR can look at DNA (CSI) or it can look at RNA which then looks to see whether the genes that went bad and resulted in my cancer are the ones that usually mean it will come back. I do not carry the gene for breast cancer (BRCA) and until now I was considered very very low risk for breast cancer so the the screening will give me an extra level of comfort. It will also help my oncologist to determine what treatment I should have.



Tiger Lily and I are enjoying ourselves, we went and got manicures and lunch today and are planning on going out for dinner as well.



Have a great weekend everybody.

Thursday, July 31, 2008

big surprise

I got on a plane this morning and flew to Iowa to surprise Tiger Lily. It worked too! She was so happy we made each other cry!

In other news my surgeon called today and she has recommended me for a study called the Taylor X study. They will use PCR to screen the tumor samples they removed for 21 markers that will predict my chance of having a recurrence. If the chances are high then I will be enrolled to have chemo, if they are intermediate then I have the choice of enrolling in a study where I will be randomized to receive either chemo or placebo, if the chances are low then I will just be followed as planned.

A note from Tiger Lily:hi everyone it is me tiger Lilly and when tulip surprised me i was so surprised i started crying and my mom to so every one who reads this i want to say that i love my mom more than anything my dad to i am going to be in iowa until august 7th so i have to go but by. TIGER LILLY

Monday, July 28, 2008

Fun web sites

If anybody is looking for some new and innovative ways to show you support breast cancer make sure you visit the following websites:

www.savethetatas.com

www.save2ndbase.com

You can pretty much find my car in most parking lots since I now have a "save the tatas" magnet on the back (DF does too along with my family and friends, use it well Big R). You never know where one might show up....

If anyone knows of any other sites that support breast cancer and can put a smile on my dad's face please forward them on.

Sorry

Sorry to everyone for not updating last week, I took a break from my computer and got some rest.

My surgeon called on Thursday and the margins were clear on the lump they took out which means that she got all of the cancer and I won't have to go back in again. I'm not sure when I start radiation, I have an appointment with an oncologist on August 8th and will find out then what the plan of action is. I'm hoping to have a week with Tiger Lily before I start so we can take a shortened trip.

I'm back at work today and will work most of this week, maybe not full days yet but I will at least get to some of the stuff that is on my desk.

Thank you to everyone who dropped off flowers, meals and sent cards last week--I am still overwhelmed and truly blessed by my friends and family.

Have a good week!

Wednesday, July 23, 2008

info link

here's a link to a website with information on the radiation treatments--just an fyi for everyone that has asked

more tomorrow i promise

http://www.imaginis.com/breasthealth/radio_bctreatment.asp

sleep tight tiger lily

yippee

I'm typing 1 handed so this will be brief. The surgery went well, they took 1 lymphnode which was clear so the initial diagnosis of grade 1 stage 1 breast cancer stands and i have a 93% chance of being breast cancer free. Couldn't of asked for better news and i cried in the recovery room i was so happy!!!!

i'm enjoying my vicoden and will post some more later.

Thanks for all the prayers, well wishes and hugs!

Monday, July 21, 2008

Tomorrow is the big day!

So, I had a great weekend just being happy that I can move forward and get this all started!

Tiger Lily and I didn't end up hiking the Billy Goat Trail since it was way too hot but we did spend some time together. She got on a plane this morning to fly to Iowa to see her grandparents and I miss her terribly already. She knows I have breast cancer, that my prognosis is excellent and that I'm having surgery. She was more upset about the fact that we won't be able to go on a mother/daughter trip we had planned on in early August since I will be started radiation two weeks after my surgery.

I go in this afternoon to have the radioactive tracer dye injected to mark the tumor draining lymph nodes (lymph nodes that may have the potential to have tumor cells--highly unlikely since my tumors are so small and slow growing). Tomorrow morning I'm first on the surgery schedule and should be home before noon. I probably won't post anything tomorrow but I'll let everyone know how I'm doing as soon as I can type. Company is always welcome, even Tuesday but don't expect me to be sane I have a script for Vicoden....

Hope everyone has a good week and talk to you soon.

Saturday, July 19, 2008

More Great News

So I got the results from the MRI biopsy late yesterday afternoon. The third mass is benign!!!



So, I will be having a lumpectomy on Tuesday followed by radiation and will hopefully be over all of this very soon.



I can't believe my luck, it's nice to finally have something go my way!!!!



I went out and celebrated with a friend last night and was up late so this will be short--later.


Have a great weekend and love to everyone! Thanks for all the prayers.

Wednesday, July 16, 2008

MRI biopsy

So, I thought I would be done with MRIs but I got to enjoy one again today. The mass is located at about 1:00 on my left breast (I'm saying mass in the hope that it's a benign fibroadenoma) and for reference, the other two are at about 3:00. So still in the same general area.

MRI guided biopsies are a little different--they take a few images pull you out of the MRI, place a form on your breast and use the MRI images for coordinates of where the catheter will be placed with the breast form as the map. Once they place the catheter you go back in the MRI to make sure it's placed correctly, then you get pulled out of the MRI and they take the samples, put you back in the MRI and make sure they took samples from the right area.... Basically, back and forth you go. At the end of the biopsy they place a small metal clip in the mass as a guide for the surgeon.

I should have the results back sometime tomorrow afternoon or Friday morning. The general plan is still that I will go in for surgery next Tuesday morning. I may be out of commission for a few days but hopefully I'll be back to normal by the last week of July and just a little smaller on one side (although I don't think I can get much smaller..)!!

Stay tuned for results!!

Tuesday, July 15, 2008

I must be a blonde

So I had my presurgical physical and my biopsy scheduled in my mind for today--both appointments are actually for tomorrow. I guess I need to have my crackberry with me at all times.....

No new news so stayed tuned for another update tomorrow!

Now I think I'll go and try to find that "any" key on my computer's keyboard.

Monday, July 14, 2008

Great weekend

Just checking in to let everyone know Tiger Lily and I had a great time at the beach. She is an amazing child and I'm so lucky to be her mother.

My biopsy is tomorrow and I should have the results by Friday. If the third mass is benign I'll be in surgery next week and pretty much done with the big part!!!

Have a great week.

Friday, July 11, 2008

Weekend plans

So, after a week of doctor's visits, site visits and running around in circles I actually have nothing to report--wow!

Tiger Lily and I decided to spend a few days at the beach enjoying the sun, sand and time together. I'm not taking my laptop so I won't be posting anything until we get back.

Thanks to everyone for all the comments and the hugs from MLB are the best!

Have a great weekend!

Thursday, July 10, 2008

Tuesday Results

So, the results from my MRI on Tuesday are neutral, the MRI found a third tumor and I am scheduled for another biopsy next Tuesday. Depending on how that turns out the plan of action may or may not change. I'm keeping my fingers crossed that like 80% of the tumors that show up on MRIs this one will be benign and I can still plan on the lumpectomy...

My visit with the surgeon where I work was good and they had a breast cancer expert read my slides from the biopsy. The slides showed moderate DCIS (ductal carcinoma in situ--pre cancerous ducts) along the edges of the biopsy sample which was also a concern and we decided to wait until the MRI came back before any plan of action was really finalized.

I had a busy day in DC today and am looking forward to spending the weekend with Tiger Lily. I'm hoping to get some plans for the weekend finalized tomorrow so we can spend some time together before she leaves for her grandparents. She has recently discovered that she likes Indian food (butter chicken especially) so I think that will be on the agenda.

Have a great Friday!

Wednesday, July 9, 2008

I have a great lab

Just a quick post as I get ready for bed, I'm in D.C. for the day tomorrow.

Everyone in my lab, including the summer students, wore pink shirts today to show how much they care. Even the guys (they probably had to search pretty hard for a pink shirt). How lucky can someone be to have such a great group of people to work with!

I'll have more news tomorrow evening about the MRI and also my visit with the second surgeon.

Love to all.

MRI

So I had my MRI yesterday to determine whether or not I have microscopic tumors in my breast. Interesting test... They have you lay on a gurney on your stomach with open spaces for your face and your breasts (I know, TMI, TMI....) and roll you into a tube for 40 minutes. They give you earplugs but there's still a lot of noise that starts and stops. I finally figured out that there are a series of clicks right before the banging starts so I stopped jumping every time it started up. The sad part is you have to remove all metal jewelry so any newly pierced ears (or other body parts) are toast (Jailhouse tattoos are also a problem--I learned that on House not from experience!!!).

I'm hoping to meet with the surgeon here today--I don't have my slides from the biopsy and have had a hard time getting them from the hospital across the street. I need to have them before they will see me. With any luck I'll have all the information I need soon and can move forward with finishing this up.

Hope everyone is well. Please send out some hope for DF's Aunt E who is in the hospital, she is a 20 year breast cancer survivor and an amazing woman.

Love to all.

Monday, July 7, 2008

Good news!

Today I had a visit with a breast surgeon and the news is excellent. The initial diagnosis is Grade 1, Stage I breast cancer. Although I have two distinct tumors the tumors are very close and she feels that the best course of action is a lumpectomy (just remove the tumors and some tissue nearby) followed by 6 weeks of focused radiation (5 days a week, ugh). She did not feel I would need chemotherapy and would just need tamoxifin (5 years of a daily pill). I'm scheduled for a breast MRI on Tuesday and if there are no small tumors that the mamograms didn't pick up then the course of action will stand. The only thing left after the MRI is to determine whether or not I have any tumors in the lymph nodes. At the time of surgery they will inject the area around the tumor with radioactive dye. The dye will then travel to any lymph nodes down stream of the tumor and the ones that are radioactive will be removed and analyzed by pathology to ensure they are cancer free. If these are also negative then the diagnosis will stand and I have a greater than 97% chance of being cancer free for more than 10 years (that's all the time they can predict but I'll take it...).



I am also lucky enough to work where I do and I have a visit with a second surgeon at my work on Wednesday. If both surgeons agree then all I have to do is just decide where to have the surgery and when.



Needless to say we are very happy and although Tiger Lily still doesn't know the reason why I'm always going to doctors these days this will make it so much easier to explain when the time comes. I plan on having a nice glass of wine with my steak dinner tonight to celebrate!



Love to all.

Friday, July 4, 2008

Why Pink Tulip?

When I decided to start this blog the hardest part was figuring out a name--my nephew said saying my cancer blog was just too lame. So why Pink Tulip? Pink is the color associated with breast cancer and Tulip is a nickname my daughter gave me (she is Tiger Lily and I'll always call her that whenever I talk about her).

So why blog? Well, I'm only 43 years old and never thought I'd be at risk for breast cancer much less actually have it. I only did my yearly mammograms because my doctor told me to. I probably have only done a breast exam 3 or 4 times in the last 2 years and that was only because someone reminded me to. I wasn't even the one that found the one that started my to visit the doctor. If by starting this at least one person takes a more proactive role in their own health then I did something right.

The other reason to start this was because I wanted to keep my friends and family up to date on this journey but not overwhelm their inboxes while they are working or talking to friends and family. Now, whenever they have time they can go ahead and log on.

I hope this achieves what I want and I hope everyone feels free to visit and comment!

Love to everyone!