The Super Metabolizer Bites the Dust

When I last left you in this saga the doctor had put me back on Tamoxifen. My other drugs were not cooperating and were giving me some extreme side effects. I had also had some lab work done to determine if I had enough of a particular enzyme which is required to break down Tamoxifen properly. Those test results revealed that I am what the doctor calls a "super metabolizer". This means that I process Tamoxifen wonderfully and am getting the full potential of this drug in preventing recurrence.

Fast forward to the last couple of months. I have been having the same horrible side effects on Tamoxifen. Fatigue....fatigue...fatigue. Did I mention fatigue? Debilitating bone pain. Every part of my body hurts. I decided to conduct a little experiment to see if it really was the meds. I went off of it for 3 weeks and my symptoms disappeared. I went back on it and within 3 weeks they were all back. BINGO! We have a winner. So I stopped taking Tamoxifen and called my doctor to make an appointment.

I saw his nurse practitioner on Wednesday. I explained my situation and she ended up calling my doctor at home to ask what to do. Now my doctor as I've said before is BIG into "the latest research". I guess this is a good thing, but it makes me feel a little bit like a guinea pig. He said that because I am a super metabolizer I am probably having more side effects because I break down the medicine TOO WELL. I just can't seem to catch a break. Apparently there is a new study...blah...blah...blah that said that the drug Toremifine has the same success results as Tamoxifen. He wants me to try it. Here is the fun part--it's not widely used in the U.S.. Tamoxifen is the drug of choice. The nurse practitioner told me that my pharmacy would not have it in stock and would have to order it. I'm not sure why this bothers me, but it does. And sure enough my local pharmacy doesn't carry it. In fact they have to send it to their national pharmacy in Florida to fill it. Then they will mail it to me. Who knows if it's covered by insurance?! All to take a handful of pills that may or may not work for me. I'm not optimistic.

So the medicine saga continues. I'm running out of options though. The next option is no meds which is scary. I had resolved myself to accept that fate this week, but we're going to try this one last pill. I'm to the point now where it really comes down to quality of life versus quantity. While I am certainly not planning on leaving this earth anytime soon, I want to be able to enjoy the time I have left here. Pain free. Not fatigued. I've gained 10 pounds in the last 4 months. That is unacceptable. Weight gain is a side effect, but when you hurt and are too tired to move the pounds find you quickly.

I am also waiting for an appointment for a bone scan. I haven't been scanned since we left Houston in 2006. I have one spot in my spine that is bothering me still even after being off my meds for weeks now. I'm not worried about it though. Frankly I think I'm just getting old, but my doctor wants to scan me just in case.

I'll let you know how the new meds are doing and the results of the scan when we know them. In the meantime...

Look up in the sky! It's a bird, it's a plane, it's.....Super Metabolizer! Coming to fight cancer in your neighborhood soon!

Chemo Curls Update

I was reading through old blog entries and realized that I haven't posted a hair update. I've had several cuts as it has grown in so the length isn't accurate anymore, but the curls cannot be denied. It is the craziest thing! I don't wear it curly very often as I'm still accustomed to straight hair, but I did capture this picture Christmas Eve.

3 Years and Counting

Today is my 3 year mark. Three years ago I was diagnosed and as of today I am free from cancer. After my scare a few months ago, I am so relieved to have made it to this day. I just visited my oncologist earlier this week and have now been moved to 6 month visits. My Tamoxifen is working beautifully with no side effects, so on a daily basis I'm not thinking about cancer. I can't tell you how nice it is to feel like life is "normal" again.

I have found that I am still very disconnected from my body. While the new "girls" are nice they still don't feel like mine. When I look in the mirror they still seem foreign to me. I don't know if that will ever change. I have also not been taking care of myself as I should be. I am beginning a workout regimen this week. I have to lose a few pounds and hopefully get back into a body that I recognize.

Princess E turned 5 this week. I am so thankful to have been able to celebrate it with her. At diagnosis all I could think about was my life ending before hers really began. Every year that I get to spend with her is precious. I am also so blessed to have had another year with Ed. He is my rock, my love, my everything. He has been such a great pillar of strength for me these last few years, but also a soft place for me to fall. I love you Ed!

So as I think on things of cancer today, I praise the Lord for his continued blessings. I praise Him for his healing touch. While someday He will call me home and I will be joyful standing in His presence, I am happy that he is giving me a little more time down here!

Better Late Than Never I Guess

I'm sitting here watching Oprah with mixed feelings. Almost three years ago I wrote to her suggesting that she air a show on breast cancer particularly in young women. I received no response. With her ability to influence the women of the world I thought that a show would be beneficial--a show to really talk about breast cancer.

Today Christina Applegate in on her show discussing her recent diagnosis of breast cancer. While I am saddened that another young woman has been diagnosed, I am happy that she intends to use her celebrity to raise awareness. My problem is why now is Oprah doing a show on this? Did she have to have a celebrity face to make it "show worthy"? I think of all the women that could have been helped if this show had been produced even just three years ago.

Yes, I am aware that it's not Oprah's responsibility to save the world, but I also know that sometimes it isn't about ratings and celebrity either. She is constantly bringing women's issues to the table, so why has it taken so long to talk about breast cancer?

Deja Vu

**Disclaimer: The following are a series of posts that I had written but not published. I want to post them now to document that they happened, but hopefully not send my family into a panic. I am OK!! We got the test results back and it wasn't cancer!! Praise the Lord!


The dictionary defines deja vu as:

1. the illusion of having previously experienced something actually being encountered for the first time.
2. disagreeable familiarity or sameness

We are going to use definition number 2 for this blog entry--a disagreeable familiarity.

I found a lump. A small, pea-sized lump in the same breast practically in the same spot as my original tumor. This is definitely "disagreeable familiarity".

I went to see my oncologist on Sept. 4th. His PA examined me first, but she didn't feel it. I showed her where it was located and she said "maybe it's just an old stitch". Ok, so I had surgery 2 years ago...I probably would have noticed this before now if it was a stitch. Cross her off the list of people I trust with my life.

Dr. H came in and examined me. He couldn't find the lump either. I pointed it out and he seemed concerned. He said, "Yes, that is new. I think I would have felt that before." I'm thinking: Why do you say that? You didn't feel it right now! This is not building my confidence in breast exams by "professionals". He made a phone call to the one MD Anderson trained breast/surgical oncologist in the Louisville area. She agreed to see me if we could get to her office immediately. (She was leaving to catch a plane somewhere.) We zipped across town to her office and were ushered right in. I like this kind of service, but it makes me nervous too. This seems serious.

She examined me and didn't find the lump either!! So all you ladies that are reading this--YOU need to check your breasts and not rely on the doctor's expertise. After I pointed out the lump, she tried to encourage me by saying it didn't feel like a typical chest wall recurrence (that is what a tumor in the breast after mastectomy is called). I know though that there is nothing "typical" about me when it comes to cancer, so this didn't really give me much peace. She decided to biopsy it right there in her office! She numbed me up and went in after it. I think she removed most of the lump for pathology, but I can't tell due to swelling. She sewed me up and made me an appointment to come back next week, Sept. 11th, for my pathology results.

This entire week and process has been a complete DEJA VU experience. It is happening almost to the letter like it did last time. My gut feeling---it's cancer. I'm prepared to go down this road again. My big fear though is whether or not it's localized in the breast or has it moved elsewhere in my body. I'm sure if my pathology comes back positive there will be some sort of body scan in my immediate future to determine my status.

So we wait...we pray...we go on living because that's all we can do.


September 9, 2008

I am keeping this as all one post in order to get down what I am thinking as I am thinking it.

We have opted not to post this or notify family of this latest development until we know there is something worth reporting or if it's just a false alarm. I don't see any value in getting everyone upset until we know for sure. However, I am still wanting to keep this blog accurate for those that are reading this that aren't family but may be following my journey.

I get my results in 2 days. I am ok one minute and terrified the next. I am prepared to hear that it is cancer. I will be thrilled and shocked if it isn't. I really don't want to do this all over again. I just got my hair back to a length I'm happy with. I just got to a place where I was living my life each day without thinking about cancer. The thought of starting the entire process over again makes my stomach upset. The real worry though is metastasis. If it is cancer then I am sure I will have a scan or two and at that point we will find out if it has spread. This terrifies me to my very core. I am not ready to have Stage 4 cancer. I am not ready to think about a limited life expectancy. There are so many overwhelming thoughts....I'm just not ready.

I know that you aren't supposed to worry until you know for sure, but that's easier said then done if you've already walked this road once. I don't even begin to know how to tell my family if it's cancer. I definitely don't know what to say if it has metastasized. For now we just continue to pray and rest in the knowledge that the Lord is in control. He is faithful.

September 11, 2008
This morning I went in for my test results. I don't think I have ever been so terrified in my life. I just knew that the words "it's cancer" were going to be uttered from her lips. Instead she showed me the pathology report....NO CANCER. She didn't really indicate what the lump was, but reassured us that it wasn't cancer.

We cried the biggest tears of joy that I think are humanly possible. I can't express the joy and relief that washed over my body. Thank you Lord! I am confident that He healed me.