Breaking up with Tamoxifen

(Two in one day.. I know; I’m sorry! But PLEASE read this one 🙂 )

 

I am very seriously considering no longer taking Tamoxifen.

I never thought I would say that.

I never thought I would say that because I do whatever my oncologists tell me to do. And I honestly think that if Dr. Howard (my Childhood oncologist) told me to take it, I would NEVER consider dropping it.

Let’s be honest, he is a better doctor than my current oncologist.  (No worries, she doesn’t read my blog. Not even sure she would recognize me on the street or remember that I was about to get married the last time I saw her.)

I am kind of shocked at myself for even considering dropping the drug. I love modern medicine. Really.

When people insult chemotherapy I take that personally because I went through it in all of my glory and it was WORTH IT. I won’t let anyone tell me it was not worth it and green tea would have done the job much easier.

And well, I knew all the statistics when I started taking Tamoxifen and I kind of knew what to expect and I knew it wouldn’t be pretty. I told myself ‘it ain’t chemo’ and got on with it.

So, in a week I set the date for my second mastectomy. The stats are still the same this month as they were before. After my second mastectomy, chances of reoccurrence are 1%, with or without the Tamoxifen.

I’m not really feeling listing why I want to drop it from my regimen after surgery, but I do want to know how you all feel about this. If you have not taken the drug, the side effects are insane. Feel free to do some research, because it’s not just hot flashes and butt expansion. The unlisted ones are also insane (for example, lightening fast stabbing headaches up to 40 times an hour. I counted this morning. I know it is PROBABLY the Tamoxifen because of previous conversations with my medical team and because I left my meds at home when I went to the beach with Camp… and they stopped. They came back about 2 weeks after I came home and resumed meds.).

 

So, tell me ‘bout it. Pros and cons from your vantage point? Any experience??

(yes, I know I need to talk to my medical team about it. I will. But I’m talking to you first!)

What’s Your Pain Level

How is it that our doctors don’t scour the internet to read forums and see what people are saying about our treatments? How is it that I have heard and read (even on the packaging for my lovely Tamoxifen) that certain side effects might just happen to a number of women but my oncologist says that is not the case?

There is nothing more irritating than knowing something is not normal and having a doctor or ANYONE tell you that it has absolutely nothing to do with your treatment and then STILL not help you figure out what it is. When the response is, ‘It’s not the meds, keep taking them.’ And you ask, ‘What is the issue, then?’ and they can only answer, ‘I don’t know’ and go no further to help you, there is a problem.

A very serious problem.

I don’t care about that the fact that the ‘issues’ are probably not life threatening, it is just that I know there is something up and I want to know why. I want it acknowledged that something is not right.

I mean, I haven’t complained to my oncologist about the silly things:  the acne (I have NEVER had acne in my life but this hormone blocker is making me break out like an 8^th grade boy), the expanding hips (Ill just keep up my workouts and complain to Blake and all of you about that one), the cracked and peeling finger nails, etc… But I have told her about the things I think she can either help or reduce and the things she may want to know about as they are considered abnormal or serious on the packaging.

Those things include blurred vision and trouble focusing and constant sore throat, bone pain and severe uterine pain.

My cycle has moved from a solid 28 days to 30 days, to 34 days, etc. It hung in there for a while but recently it went all the way to 46 days. On day 43 I doubled over in pain while taking a shower and freaked myself and Blake out. The next morning I called my oncologist and she told me to go in to the ER to get checked out.

I did, of course. I do everything they tell me. I can’t help it.

I  wasted 5 plus hours of my life only to leave the ER with no information. The doctor did not tell me any of my test results or give me copies as I requested. Instead, he came in and said that he had talked to my oncologist and had decided that it was all in my head.

Of COURSE I was making up the horrible pain and absentee period! (Sorry if that is TMI, but bodies are strange creatures and that is actually relevant)

Completely logical explanation.

The next day I received a call from my oncologist’s nurse and she told me that they did find a cyst. This is not abnormal to me, as there are cysts in every ultrasound I have ever had. I even told them there was probably a cyst there, but this was not normal pain for a cyst. Nor was it located in a normal cyst pain area. Anyway, she told me it was probably the cyst I was feeling when I experienced the pain- the pain that I informed her had dulled but was still present. I inquired about the, now, 44 day cycle. Her response was that my doctor said it had nothing to do with my estrogen blocker. That’s it.

Up until last Friday I experienced that pain constantly and I had absolutely no idea what to do about it.

My positive thought is that I go see my surgeon two weeks from today and he and his staff seem to know more about the treatment of premenopausal women than my oncologist does. They prepared me more than she has, for sure. I fully expect to leave the surgeons office with answers or at least an idea of what is going on and I know they will help me if they can- if it is possible.

Because dang it! It hurts!

Maybe it wouldn’t be so annoying to me except that I DO NOT complain about pain. I just don’t. Not until it is ridiculous.

My mother used to stare me down when a nurse asked my pain level after surgeries. My answer is always 3. I think any pain that is not making my want to kill things is a 3. I have gotten screamed at by my loved ones for refusing pain meds more than I can count. Going to the doctor and asking for help was really tough for me to do, but I was really in that much pain. And I was scared.

So. Do you guys have any info you can share? And advice or links to advice? I’ve read every forum and popular medical site that addressed this with little luck.

July

July is a special month for me every year, especially this year.

This year Ill  turn 28 and celebrate ten years since my amputation.  I know that sounds weird, but it is kind of a day to celebrate.

July 24th of 2003 is a day to celebrate the anniversary of because it marked the day that ended a two year struggle. In two years I had about 6 surgeries/procedures (some I traveled for) because of all of the issues with my knee replacement, I was constantly in pain and, at one point, it was best for me to use a wheelchair while I was in high school. (I actually stopped using it my senior year, against my mothers wishes…so maybe it was best for me the entire time.)

Other things Ill do this month?

Wait on a doctors appointment my Oncologist is setting up (more on that when I know more. keep your fingers crossed for good results!)

Speaking of Dr N., I saw her Friday! I had fewer tests than I would have liked to have… (strange idea, for most) but what I did have done showed positive results. Ill see her again in December, but I am to call her if I have any painful side effects from the meds. Let’s hope that doesn’t happen!

Here are a few photos from my visit!

makin this gown look good!

Cancer number 1 and all of those surgeries didn’t leave many working veins for these guys.. and my left arm is out of commission!

Im sorry Ive been over loading you guys with photos! I just can’t help myself 🙂

Mass decisions

“It is important to fight, and fight again, and keep fighting, for only then can evil be kept at bay, though never quite eradicated.” A. Dumbledore

What an appropriate quote, huh? A Harry Potter version of ‘Run to the Bear’.

Now, the post:

The good news is that I do NOT have to have radiation.

What?!

I know, right.

I have been told since January 2^nd that my tumor was just SO HUGE that I would need radiation. There was not a single appointment in which I was told otherwise… Until last week.

I went in to see the radiologist on my team, and she said I didn’t need it. The side effects would do more harm than the radiation would do good.

I KNEW this would upset my surgeon, so I waited for the call from his office. I got it the very next day. My team had decided to send my case to the tumor board and let them decide. They would look over my case as MY case, not as one of the masses with my type of breast cancer. I became an individual when they decided what to do. They looked at my personal history with cancer and the side effects I have or will likely have from my previous treatments, they looked at family history, and they looked at my tumor’s personality… and they said no radiation is needed, apparently.

Would you believe me if I told you this scares the shit out of me? That I’m not that big of a fan of the decision?

I mean, I feel better now that a whole board of people looked at my case. But I still have the lingering feeling from the first day my radiologist threw me that curveball.

When I had cancer at 12 years old, I had a really aggressive treatment protocol. Like, crazy aggressive. I was in the hospital every other week for a week of intravenous chemotherapy. I lost my hair in about a day (ok, really it was about two weeks- but still).  I’ve said it all along, my curse and my advantage in this is that I have done it before. While I look forward to the arrogant surgeons and decisive oncologists, I have expectations for what will happen. And aside from that, I’ve lived in this world of cancer for 15 years. And as stated before, I’ve seen it cause some damage. From that perspective, my thinking is… “What the crap?! No! Blast me!”

However, this is better. I mean. No radiation?! Heck yeah no radiation! I wasn’t looking forward to it; I’m just programmed to think I need to be treated aggressively if I want to live, when it comes to cancer.

So heck yeah, no radiation!

My skin and my heart are rejoicing! No damage will be done to them!

I’m still not done, though. I’ve still got to meet with my oncologist and start this little pill since my cancer is hormone receptive. But hey, I can take a pill every day. Just pass it to me with a diet coke and we will get this done.

Otherwise, this weekend was a bit of a fuss. I ended up at the UAB emergency room because of an exposed stitch that became infected (EW) and some fluid buildup out of NOWHERE. Turns out, I’ve totally over done it and that is what caused the buildup. I am to sit still (don’t use my crutches) and slow down on stretching and such for a while. No more work for a bit and not for long shifts when I go back. Apparently, I jumped back into that a little sooner than my surgeon would have liked.

Oops.

I just really wanted to go back to normal. And since I have been numb up until this weekend, I haven’t been able to tell if I’m overdoing.  I’ve also had some fat necrosis in my side and around the incision. Kinda disgusting, but it has all either gone away on its own or it was taken care of today.

Plans are to get this pill going at the beginning of next month and recon in 11 months. Now, who wants to tell me about their implants??

People I kinda liked.

I just read a blog post that RESONATED with me. Really reallyreallyreally resonated with me.

I would like you to read it, too, because she said it so well.

Click me to read it

I found it because I have started following her after the fact, and she referenced it saying how sorry she was about the misplaced guilt it produced. (you can see that here)

I think it’s important for me to reference BOTH posts because both of them are necessary.

I mean it when I talk about gratitude for you guys. I mean it more than I can properly express. If you get a thank you card from me, I dont just do that for social graces- I do that because I am TRUELY thankful for you and your actions.

That being said, I want to tell you a bit about the things people do and say when you tell them you have cancer.

You can lose friends over this crap. Really. Not even kidding.

I have.

I was so upset by it when it happened. I told a friend for over 8 years about my little predicament and what do you know? I was deleted on Facebook and suddenly all of my texts and calls weren’t answered. That sucked. Realllllly sucked. I may or may not have called them out on it and told them they need to learn to deal with these things like an adult, because believe it or not- we are only at the ripe young age of thirty-ish and this will continue to happen to people we know as we age. People get sick. People get cancer. I’m just the first of many they know or will know. I also may or may not have guilt over confronting my ‘friend’. But I feel guilt over pretty much everything right now.

While this is an EXTREME case, it’s a real example of how people can be.

The opposite of that example is when a complete stranger joins in your support network and brings you dinner. Or makes you an awesome sign (there’s more to that sign that just it being made for me, mind you. Someone commissioned it, but that’s not the end of the story. SO MANY GREAT PEOPLE EXIST) . Or offers to so something INCREDIBLE for your upcoming wedding. I’ve had strangers do all of those things for me.

But grand gestures are not needed. Just basic human kindness and acknowledgement. A sweet word, even if it’s just lip service, can do about a million good things to my day. Especially if it’s a bad day (which I have). I’m not actually asking for lip service, here. I’m just telling you that something tiny is fine. Something like, “How are you today?”

and don’t worry. If you ask me that, chances are I’m going to answer you and talk about everything EXCEPT my cancer, unless you specifically ask me about it. I do that purposefully because I know cancer is not a fun subject and some people just can’t handle it. I mean, some of you I will tell all about it because I know that’s what you are actually asking me about. Cancer can even be a hard word to say.

What I’m saying here is this: chances are, if you are reading this, you are not someone that has offended or hurt me and you’ve probably already made your mark in my life with your words or your kindness. But my gosh if people don’t just freakin’ suck sometimes.

And I’ve wanted to tell people about that for weeks now!

I hope no one has any guilt or thinks they are lumped into this group. I want to reiterate what she says about not wanting to post it, but WANTING to post it, and why she didn’t want to:

“(1) I did not want to diminish the INCREDIBLE outpouring of love and support I’ve experienced from so many people, (2) I didn’t to lead folks to think that I am coping more poorly than I actually am, or (3) I didn’t want to make the wrong people think I was talking about them”

I also don’t want to seem ungrateful. I AM SO GRATEFUL.

But I’m really sad that people turn out to suck, sometimes. People I kinda liked.

You guys know that cancer poem? The one about what cancer can’t do?

What Cancer Can’t Do

Cancer is so limited…
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Life
It cannot conquer the Spirit

Author Unknown

Well. I’ve heard that poem my whole life, basically. Because I am involved in an oncology camp, I hear a lot of stuff like that. But at the same time, I AM involved in an oncology camp and have a lot of relationships with people and families touched by cancer and I have seen cancer do ALL of those things. I’ve seen it rip families apart. At sibling camp one year, a girl even told me that she wished her sister would just go ahead and die so they could all do normal stuff again (wtf, right?). She was 15. Her sister was about 10.

Cancer CAN do all of that stuff. But it is really up to each and every person that comes in contact with it when it comes to what it WILL do.

So, thanks for not bailing on me. Thanks for deciding not to let cancer ruin our relationship or alienate me (or you). And thanks for all those extra things you guys do for me. Like read this fun little blog I write about cancer. ha

They should change the name of that poem from ‘What Cancer Can’t do” to “What Cancer Won’t do”.Because it CAN… but I have no intention of letting it.