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.

Back To Tamoxifen

After my last visit I agreed to try Femara. It lasted one week. It made my feet feel like they were on fire. I can't tolerate that nonsense. I stopped taking it for the 3 weeks prior to my appointment. I haven't felt so good in a long time. It was the first time I haven't had cancer drugs in my system in almost 3 years. My debilitating body pain stopped just days after stopping the Aromasin. My hands are still hurting in the morning though.

At my appointment on Monday we decided that I will go back on Tamoxifen. My oncologist is HUGE on scientific studies and gave me a long explanation about new developments with Tamoxifen. Doctors used to believe that some women grew resistant to this drug and therefore it wasn't protecting them from cancer. Research now shows that some women don't have enough of the enzyme that is required to process Tamoxifen correctly. My doctor is running some lab work on me to determine if I am one of those women. If so then we will have to switch me back to an aromatase-inhibitor (boo...hiss). If I'm not one of those women I can keep on taking Tamoxifen and receive great results. I go back in October to find out my results.

He also finally said I can quit taking the Drisdol (mega vitamin D dose). I think that is contributing to my hand pain. Now I just have to take a daily supplement along with my calcium.

So all in all, I am pleased. I'm feeling better...not 100%, but better. Let's just hope all of this mess is worth it. Cancer stay away!!

It's a Bitter Pill to Swallow

My oncologist was saved today because I was seen initially by his nurse practitioner. SHE was very helpful and actually seemed concerned about my issues. She apparently went back to him and relayed my concerns so when he talked with me his bedside manner was better than usual.

It boils down to this: I have considered myself through with cancer treatment. I thought of the drugs that I have been taking as a dose of prevention. The painful reality is that I am still in the middle of treatment or better yet, I'm in a treatment that will never end. My type of tumor was very aggressive. Even with all of the treatments/precautions we've taken, I have a serious risk of recurrence due to the cancer type as well as the positive genetic mutation. These little pills that are making me miserable are daily treating my body to kill any cancer cells forming. Unfortunately the nurse practitioner had to concede the fact that we don't know long term what these drugs are doing to the rest of my body. So it comes down to basically a roll of the dice--prevent breast cancer recurrence in the short term or possibly cause a different cancer in the long term. Not great options either way if you ask me.

So I caved in and agreed to change to a drug called Femara. It has the same potential side effects as Aromasin, but some women do better on this for some reason--some do worse. I will be going back to the doctor as scheduled in July for a follow-up. We will check my vitamin D levels then and also see how the Femara is working for me.

I'm not happy about any of it. I want to be finished with cancer. I don't want to have to keep fighting this disease. I want to leave it behind and not look back. I'm tired of taking pills. I'm tired of my body being chemically altered. I'm tired of the whole damn process. Oh and to add insult to injury the 10 pounds I've gained since the hysterectomy is normal. As if having cancer and all it's repercussions aren't bad enough, I have to start getting fat too. Thanks cancer--you really know how to make a girl cry.

It's been a while...

As most cancer survivors know, cancer is always with you. As you get further down the road though you are blessed with days that you don't think about it and life almost seems normal again. I've been living many of those wonderful days not thinking about cancer. This in turn has made for poor blogging about cancer. Sometimes less is more...

I started taking Aromasin in February. It seemed to be working well for me. I have now come to realize that isn't true. About a month after beginning this drug I noticed that my hands were really hurting. They felt weak and stiff. The joints hurt. Like with any other symptom you write it off as something else. As the months have progressed, the pain has been spreading through the rest of my body. In the last week I have been in debilitating pain each morning when I get up. My genius husband (and I do say that with much love) said, "Maybe it's your medicine?" Ding-ding-ding...we have winner! Why it never occurred to me that I could be experiencing side effects is beyond me. Perhaps it's the brain damage that I suffered from chemo...and I'm serious when I say that.

I did a little research and sure enough one of the "contact your doctor if you experience this" side effects is muscle and bone pain. I have a call into my oncologist to see what he recommends. I am due to see him in July for a follow-up on my vitamin D levels. I didn't post about that before, but mine were extremely low. This is bad when you are fighting off osteoporosis due to a hysterectomy at 33. He has me on a mega-dose of D as well which could also be causing me the pain.

**My doctor just called and wants to see me tomorrow. I don't know if that's encouraging or should make me nervous.

Anyway, I've really been thinking about taking this aromatase inhibitor. I've never been big on taking medicine and I am wondering if it's really necessary. I know I will have a fight on my hands with my doctor--aren't they all hard-wired to prescribe medicine we should be taking? Ed and I talked about it though and unless my doctor can give my some very compelling evidence to continue taking it I don't think I'm going to. It is "helping" prevent recurrence, but what is it doing to the rest of my body. I aggressively treated my breast cancer with chemo and bilateral mastectomies. I even had an elective hysterectomy so that I wouldn't have all of that estrogen floating around in my system. I'm trying to continue fighting this disease but at what cost? If the effects of this drug are manifesting itself in debilitating bone pain what else is it doing to my liver, kidneys, and brain that I don't feel? How many years is this drug adding to my life or worse taking from it?

We'll be discussing this in tomorrow's meeting. It won't be pretty and I can predict that I will probably be looking for a new oncologist before it's all said and done.

To be continued tomorrow...

Are You Kidding Me???

Since I have now had a hysterectomy my oncologist prescribed me a new medicine. (I was taking Tamoxifen.) Because I am now in full menopause I have to take Aromasin. (Tamoxifen is for pre-menopausal women.) This drug is similar to Tamoxifen. It basically does the same thing in my system, but studies indicate this new medicine is better at preventing recurrence (according to my doctor). Here's the big difference though...I can get Tamoxifen in a generic form which costs me $5 after insurance. My new medicine doesn't have a generic equivalent. I pay $40 a month after insurance. This medicine without insurance would cost me $352.88 a MONTH!!! That is CRIMINAL!! Is this stuff made out of some rare chemical compound found in the deepest jungles of the Amazon??? Probably not...it's probably basic stuff that is easy to manufacture. So basically cancer patients are being ROBBED in order to stay alive! Hell they make more money treating us for cancer so I guess if we can't afford maintenance medication then we will relapse thus causing further needed treatment which will make the medical industry MORE MONEY!! I'm not one for conspiracy theories but this has CONSPIRACY written all over it!! This is why cancer is never over for cancer patients. We deal with it daily in some form--some days it's emotional, others it's physical....today it's financial.

Relay For Life

I am participating in the American Cancer Society's Relay For Life this year. Our church put together a team and I am excited to be a part of it. We will be walking on June 13th-14th. I am not going to aggressively seek donations like I did for the 3Day last October. There is no minimum fundraising requirement. I just ask that if you feel led please give a donation to help support this cause. Every dollar raised gets us closer to ending this horrible disease. Be a part of the cure today and make a donation.

There is a link to my personal donation page on the right under Relay For Life.

Thanks for your continued support!

One week post-op

One week ago today I had a complete hysterectomy: uterus, ovaries and cervix. Apparently I had two cysts on one of my ovaries (who knew?) which was sent to pathology just in case. The entire procedure was done laproscopically. I highly recommend it. The worst part has been my belly button. There is a one inch incision coming from the center of it vertically running downward. The incision isn't that bad it's just really sore. Apparently they really manuevered that scope around in there and now I'm paying the price for it. I also have 2 tiny incisions on either side of my abdomen where my ovaries used to be. It really was a piece of cake. I stopped taking the heavy pain meds on day 3 and stopped taking all meds by day 5. I'm still a little tender in the middle, but feeling great otherwise.

So the burning question...menopause symptoms??

Yep, I had my first official hot flash on day 4. I recognized it for what it was quickly since I had so many during chemo. Thankfully I haven't had many more yet. I have already found that I'm having a hard time regulating my body temperature at night. I had the same problem during chemo. One minute I'm hot and the very next minute I'm cold. Hopefully this will stabilize as it's quite annoying. I at least haven't had any night sweats yet--those are brutal.

So all in all, it's been a good experience if you can say that about going through "the change" at 33. I go in for my follow-up appointment on Wednesday, and then I meet with my oncologist on the 18th to start a new medication to help prevent recurrence of breast cancer.

I am hopeful that this blog will be stagnate for a while again as life returns to normal issues that don't involve cancer, genetics, recurrence and testing. Thanks for all the prayers and support. You means the world to me.

I feel a bit like this guy

I'm beginning to feel a bit like this guy. I feel like I'm full of parts that have to be removed.

I went for my pre-op appointment this morning. Yep, it's here already--complete hysterectomy next Monday. I'm only nervous from the "it's major surgery" aspect, but I'm remarkably calm considering the last remnants of my womanhood are being removed.

I'm just ready to get on with it. I want to get this behind me and hopefully forget about cancer/mutant genes/recurrence for a good while. I'm hoping the recovery goes as well as my c-section recovery did. I thought that was a piece of cake. Keep your fingers crossed for me.

I should be in the hospital just one night. I'll try to post an update when I get back home on Tuesday.