Pink Stinks - We Need a Cure

Happy New Year!

2009-01-05T10:20:00.003-05:00

I'm back! The holidays were fine. I wasn't sure how they would be, but they were normal. Our families were as annoying as ever and Ken managed to put less thought than usual into gifts. We spent time with friends and things were generally good. Only two of our friends go home for the holidays, so we have a great time.

We have lots going on:

I have gone to once monthly doctors appointments. After my last blood work, my doctor, who supposedly does not give results over the phone, called to tell me how exceptional my results were. Which is great. I should be excited, and I am mostly. But I have 2 major issues. First, in the month between appointments, I lose the weekly or biweekly 'your doing great' talks. Now, I understand rationally that I go less because I am doing well, but it is hard to dismiss every time you feel something. For example, I know that 2 months ago my brain was fine. I know that the originally lump is shrinking. I know that my liver is only scar tissue at this point. I know my tumor markers are going down 'remarkably.' But every time my head aches slightly, I decide it has spread to my brain. The generally rule is you should feel something 10 days or more before you get concerned or call your oncologist. I have never had a feeling over 10 minutes, but still I stress. Then I stress that I stressed, because stress is bad for you. Then I go to yoga.

The other issue is that it is hard to be excited when you know sometime the news will be bad again. I feel like I have no where to go but down. Silly I know. It isn't constant, but more than I like. I feel normal, so I want to feel normal.

On to happier things. We found a new apartment in the building and hope to move February 1st. We have to get our apartment subleased first and have had little luck so far. But hopefully we will have more luck this week. Most people don't look for an apartment the week between Christmas and New Year's.

We are going to London on February 19 - 23. I am so excited. The only thing that I hate is leaving my babies. So we are hoping to get someone to stay with them at our apartment. If you know anyone that would like a free* place to stay in New York for a few days, let me know.

So life is pretty good.

*Dog walking and cat petting required.

2008-12-03T17:05:00.002-05:00

I'm good. No changes other than the cancer is going away (yay!). Side effects are minimal, lots of yoga. Spending time with friends, lots of museums, and planning some trips. All good. I made a post a couple of weeks ago, but it was lost somehow.

Anyway, am I the only person that apparently does not remember anyone I went to high school with? I do not know half the people that are on facebook from high school, including several in our class. And I don't even have an annual here to look them up. It is really embarrassing.

Monday, Monday

2008-11-10T16:22:00.002-05:00

Fall in Central Park.

I went to the doctor today. He said I was doing amazing and do not have to see him again for 1 month! I have become quite fond of my doctor, but I am glad I will not be seeing him as often. My doctor said I was doing amazing. I am responding to the treatment extremely well. The tumor has decreased in size, and seems to be almost gone. I have been taking this medicine for less than 2 months. I am, to quote my doctor, on cruise control now.

On Thursday, I have an appointment for a liver biopsy. This will be purely academic and solely for future purposes. It will prove metastasis. Even if it is inconclusive or negative, my treatment will remain the same. But proof of metastasis will be useful for clinical trials in the future. After, that I will go to monthly appointments and quarterly scans. These will just tell us that the cancer is going away and not coming back or spreading. I will have my ovaries removed next year. I will get a 15 minute injection to strengthen my bones every month. And I will take a pill everyday. Cruise Control.

The prognosis of all this is good. Hormone treatment could work for years, even decades. And then there are many other options that exist now. Just imagine how many will exist in several years!

I can say the strangest thing in the world has to be sitting in an oncologist office for stage 4 cancer and hearing the words your healthy. Cancer and healthy just don't mesh in my mind. But I am healthy. I can run 3 miles and go to 2 yoga classes that day. I can have a glass of wine. I can do anything anyone else can.

Life is pretty normal. There are a few changes, but in general everything is the same. We have a bit less money right now, but so does everyone else. The only upside of an economic downturn. Ken is back to being a workaholic. I know he is doing better, because he takes forever to return my calls and emails. We are good.

My Day Off

2008-11-07T06:56:00.002-05:00

One day of work exhausted me, so what do I do on my day off?

8:00 Gym- Bike 10 miles

9:00 Come home, eat, and get ready for ...

11:00 Tour of Gracie Mansion with the New York Restoration Project

2:00 Rush home to wait on grocery delivery

4:00 Walk Camden

4:45 Yoga Class

6:00 Second Yoga Class

7:45 Come home and prepare (okay, order) dinner

Nice relaxing day.

Back to Work

2008-11-06T07:14:00.002-05:00

Wow. Eight hours and I am exhausted! I went to sleep at 9:30 last night and only woke up at 7:00 this morning because Ken was getting ready to walk Camden. I am so glad I am not going back today. And this is a really easy, cushy job.

Quick backstory: I hated my full time job, and actually went to part time at the beginning of September. I then got another part time job. So I had 2 jobs for a few brief weeks. It seemed crazy, but it made the old job a bit better. One thing that made the old job so tough was that I was a solo act. Due to this, I old job cannot facilitate my need for a flexible schedule. So, I will only be working at the new job.

New job is at a lovely Episcopal church in the Village. I do the Rasier's Edge, a development software, and not much else. It's two days a week and I get a free lunch when I am there. No stress and nothing I bring home. But it was still exhausting yesterday.

Election Day

2008-11-04T10:25:00.002-05:00

I voted. And I got my free Starbucks. I am about to head to the gym and then veg for a bit before yoga tonight. I will be up watching the returns. Then I am going back to work tomorrow. Part time, two or three days a week. I am excited, but a bit nervous. It is just going to be very strange. But appointments are dwindling a bit, and it will nice to get out some. But with the appointments I have, yoga, and the gym, it is going to be a pretty full schedule.

I went to the NYPL Young Lions Disco Party last night. Above is a picture of the library, discoed out.

Weekend Update

2008-11-02T09:46:00.002-05:00

I had a very busy and wonderful week. I honestly feel fabulous, so my update will be on all the fun things I did this week.

Monday night, we went to a small book party for Ina Garten, the Barefoot Contessa. It was held at her friends home for the Young Lions Conservators. It was a small group of 25 Young Lions and she spent some time speaking with each of us. We spoke with her for at least 10 minutes. The food was great. We had parmesan and thyme crackers (I made them yesterday, they are great), Roquefort in endive, smoked salmon on toast, brownies, and macaroons (so good!). She then answered questions to the group and we were given books, which she signed for us. It was so much fun. She was just like on her show, and it was a great opportunity.

Tuesday, I went to MoMA for a member's preview of the Joan Miro exhibit. It was so crowded that we made a quick cruise by the exhibit. I went back Friday afternoon to get a closer look. It is a really great presentation. If you were ever going to come to MoMA this would be the time, with the Van Gogh and Miro, it is truly amazing.

Thursday night was the Fall Masquerade Gala for the Young Patrons of Lincoln Center. We were on the benefit committee and we had been nervous that the event was going to be under attended. But we had a great crowd and the event was tons of fun. The music was so great. It made me want to go on an iTunes binge. Plus, I won a beautiful Judith Ripka necklace in the silent auction. I love silent auctions! We finished the night in the Oak Room at the Plaza - very old New York.

Friday, I spent the day at the Met, MoMA, and in Central Park. Ken's cousin is running the marathon today and arrived in town Friday night. We had a low key dinner. It was a really nice day. And the whole weekend has been low key. We tend to do that - crazy busy weeks and restful weekends. Yesterday we went to the gym and then to yoga. Afterwards we vegged all night and enjoyed the Texas game. Today, is gym and yoga and possibly something with cousin Joey, if he feels up to it.

Next week looks promising as well. Monday night we have our final Benefit Committee Gala - Young Lions Disco Party. Tuesday will be a hopefully very exciting election night! But the most exciting thing is no doctor's appointments. I am going to spend the week doing yoga, going to the gym, and resting. I am so excited.

Update

2008-10-29T09:17:00.002-04:00

I want to thank you all for your thoughts and prayers. I have to head to yoga soon, but I wanted to post a quick update.

Both my appointments went well. The doctor I have been seeing from the beginning said I was doing remarkable. He did blood work to test the cancer. No results yet, but I am not worried about them. Apparently a treatment can cause a flare up before it works, so even an increased number is not necessarily bad. I am doing so well that I don't have to go back for 2 weeks! Next week is my first week without an appointment in over a month!

Memorial Sloan Kettering went well and differently than I expected. It had it's pros and cons, but they also were very okay with me seeing my current doctor and MSK consulting until I need a different treatment. We are going to look at some of the pros and cons and talk to my current doctor. I will get into the pros and cons when I have more time. But the news I received was very promising.

The doctor told me she would maintain my current treatment with a few small changes that are more like enhancements. First, she believed I should have a liver biopsy, which is something I wanted all along. I will be having the biopsy in two weeks. It will confirm the diagnosis which will be good not just for my mental being but future clinical trials. Also, it will confirm the cancer that has spread is the same, which it normally is, but isn't always. The biopsy needs to be done soon, before the treatment works and removes the liver lesions.

She also recommended that the injection I get be increased to monthly, due to my age, or even better that I have my ovaries removed. I am opting for ovary removal, although I will probably wait until the first of the year due to the holidays and insurance deductibles. [We have a maximum out of pocket, which we will not meet this year. We are opting to do somethings the first week of January rather than the last week of December. It isn't that much money, but since it is actually only three days, we have decided to opt for the financial savings.] My cancer is strongly estrogen receptive, which is a good thing due to targeted treatment options. Having an estrogen 'factory' in my body makes little sense.

The third option is a monthly injection that would strengthen my bones and may or may not stop some spread as a result. This would allow me to hopefully maintain my lack of bone damage.

The best thing about the appointment was that I really felt a long term prognosis. First she said I was dealing with a chronic illness that she compared to lupus and diabetes. She and her nurse also uses the word decades several times. They were referring to other patients, but time frames are so seldom mentioned in my condition. She made it clear that I am in the optimum condition to deal with this. I am healthy. I have no damage. I am a triple positive (ER+/PR+, HER-2Neu +), which gives me many targeted treatment options. I may not even have chemo for years.

So the update is very good and I am very optimistic. Thanks again for all the positive thoughts and prayers.

PS- I will give a Ina Garten update later.

2008-10-26T21:21:00.002-04:00

I have no real update. I had a pretty normal week. I felt completely normal. I went to yoga almost everyday. I went to the gym 4 days, I biked 15 miles yesterday and ran 3.5 miles today. I went to Bid Against Hunger and saw some famous chefs and ate some great food. Everything felt very normal. Of course I know it isn't.

That is what is so odd about it all. I feel fine and I feel normal. I have my hair. I am getting more exercise and rest than ever. I look better than I have in years. I ran into a casual friend a few weeks ago that told me I looked carefree. That was good for a laugh.

My diet has gotten a bit odd. I drink carrot juice every morning. And then there is the sauerkraut... Sauerkraut is apparently a super food that seems to actually kill some cancer cells. So I ordered 3 pounds. I have been eating a small plate a day. I don't hate sauerkraut, but I don't love it either. But it isn't too bad. Those are the only real odd things I have added, but wow is it strange.

This is a big week for me and I could really use some positive thoughts and prayers. First I have my usual Monday appointment which always causes me anxiety. Tuesday I have an appointment at Memorial Sloan Kettering, which is one of the top cancer hospitals in the country. While I am excited about the care I could receive at MSK, I am also nervous about speaking with something new. I can deal with what I know now and I have some hope. While I know Sloan Kettering is my best chance, the thought of new news and new people makes me very anxious. Luckily it is an early appointment, so I won't get too worked up. Finally, I am nervous about possibly switching doctors, or the 'dumping' to be exact. My current doctor is a great doctor and man who has taken a great deal of time with me and got me exceedingly quick treatment. But I can't get too nervous about that yet.

On top of these appointments, I have a big week socially. I am excited, but also nervous. And with as much as I have going on, I am actually missing a couple of things I was planning in doing before the diagnosis. But it should be a great week. Monday night is a small gathering (25 people) with Ina Garten, the Barefoot Contessa! I am so excited, as I have adored her for years. Tuesday, if I am up to it, is a preview of the Miro exhibit at MoMA. Thursday night is the Young Patrons of Lincoln Center fall benefit. I am on the benefit committee and have a great dress. We also get to attend an after party at the Plaza, again if I am up to it. I cancelled our Halloween plans, so we could rest after a crazy week. I'm trying to balance fitting it all in and not overdoing it. I am not committing to anything in the spring so hopefully it will be a bit less stressful.

Another Vent and Some Other Stuff Too

2008-10-14T10:07:00.004-04:00

My grandmother died two years ago, actually two years to the day of my diagnosis. My father let it slip this morning that my grandfather has a girlfriend of sorts. I say let it slip because this is apparently very hush - hush. So they can keep something that is happening before everyone's eyes a secret, but they cannot keep something that is happening over a thousand miles away a secret. There is a similar hush - hush event in Ken's family as well.

Otherwise all is well, relatively. I have yoga tonight and for the next few days. Thank you for all your thoughts and prayers.

Update

2008-10-13T15:02:00.003-04:00

My brain is fine. So we have a little good news after so much bad. I feel so much better, but I am so drained. I went to the gym for a half hour. Now I want to take a nap.

Thanks for any and all the thoughts and prayers.

My Haircut

2008-10-12T20:31:00.000-04:00

I get my hair cut at a fabulous and slightly expensive Manhattan salon. I was really past due for a hair cut when I went to the doctor on September 23. When I left the doctor, I thought I would not need a hair cut for a year. The doctor told me I had breast cancer. In the spaces I had between test and appointments, I looked for wigs online. I read about chemotherapy. I read that it might not be as bad as I imagined. I thought there might even be a chance that I could attend one or all of the benefits I was serving on committees for. Silly to think about? Sure. But Ken and I have worked hard and were very proud to be involved in these benefits and organizations. I decided I was going to make it to these benefits.

I got my haircut this Thursday and I wasn't happy about it. I won't be starting chemotherapy to destroy this disease. I am on hormone therapy hoping to manage the cancer. Test determined that I have metastatic breast cancer. Metastatic means that the cancer has spread outside the breast. In my case it has spread to the liver and the bones. I had a MRI Friday to rule out spread to my brain. I hope to find out those result on Monday - tomorrow. The doctor told me not to worry, but how can you not. Metastatic means that there is no cure. I can only hope that we can treat the cancer as a chronic disease.

I am lucky that I am Estrogen Receptor positive and HER-2 positive. This means two different treatment options in addition to radiation and chemotherapy. My doctor is treating each option as a separate tool. Each tool means more time. More time means more research and more research means more tools. I have a second opinion in two weeks at Sloan-Kettering, which is one of the foremost cancer hospitals in the world. They originally told me the wait was 5 months. With some help we got an appointment in 4 weeks. We will compare options and see what we feel is the best. The second opinion petrifies me. I can deal with what I know now, but getting more negative news just seems like more than I can bear.

I feel fine. The doctor said my body is functioning and the cancer has done no damage to my liver. My bones show no real signs of damage. I can work out. I do tons of yoga. I took five classes last week. I ran 3 miles twice last week as well. I have has no side effects to the medication. Nothing, not even a hot flash. It seems almost impossible to face your mortality when you feel healthier than ever. But that is what I have to do.

This diagnosis is one reason I am so angry the news spread. It is something that I have asked the few that know to keep to themselves. I ask that if you are reading this you do the same. I am still undergoing test and I do not have all the facts yet. I don't want to share this with casual acquaintances and strangers until I know all the facts. But I want to vent and I want others to know why I am not taking the path they assume I will be taking.

So keep me in your thoughts and prayers. If you read this Sunday night, I can use prayers, mojo, positive thoughts, whatever you've got, that the MRI comes back with no spread to the brain. This is currently my greatest fear. Also, think about me and the upcoming second opinion. I pray that they give me more options that give me many years to come. Also, pray that I get to share this information in my own time and in my own way. And also that our family members will stop making use feel guilty about how we want this information shared. Apparently Ken and I are making my cancer difficult on some of them. I want to stay positive and as low stress as possible. I feel my body can heal best when that is what it can focus on.

New Journey, New Blog

2008-10-12T20:24:00.000-04:00

I decided that since I was on a new path I needed a new blog. This blog will be dedicated to my experiences dealing with breast cancer. This will be a very personal and contain my experiences- positive and negative- and my rants and raves. I am hoping to have lots of raves. So here it is.