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!)

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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 8th 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.

I like big butts and I cannot lie?

Tamoxifen. I know you all are probably SICK of hearing about Tamoxifen.

But listen, it’s new for me!

And it’s freakin’ crazy what it does to me and my body!

Obviously, by body is a little wonky for a 27 year old woman, anyway, but this sure doesn’t help.

I mean, with Tamoxifen, I may as well be going through menopause. I’m not even kidding.

Just a few short weeks after I was diagnosed with my Breast cancer, I was given my fertility ‘diagnosis’ from my TLC doctors (Taking on Life After Cancer – I go to keep up with my side effects from the year of intense inpatient chemo and such from my Osteo) and it was on the really low end of the normal spectrum, but there was still a chance. To me, that would mean that my body’s on a cusp, right? It’s a precarious situation! Like balancing a see-saw at the playground!

I went from living as a seemingly normal 27 year old, pre-manopause, to something else.

I am not used to these insane, monumental body changes!

So, sure. We all know about the EPIC hot flashes it causes. Man they are epic. I feel like I’ve been dropped in a deep fryer on a really regular basis. The muscles in my legs and my abdomen are the worst- they burn from the inside and I literally think I’m going to cook! Haha It gets intense, especially in this Alabama summer heat!

(These Hot flashes ARE SO INTENSE that I have woken up in the morning to start my day with my pajamas all over the floor and hung up in the sheets… I have done so with NO memory of stripping them off in the night! My brain is so upset by them that it won’t even wake me up to take off the clothes! It just makes me do it!)

And you all know about it causing me to be exceptionally exhausted every afternoon, no matter what I do (unless I drink a spark!). You know that it’s not just normal tired, but crazy headache, wobbly eyed, pms-y tired. And some of you are probably experiencing these same exact things.

But here is what is currently weirding me out: I have not gained a pound, but my hips are growing!

The men have always joked that the women in my family get a little bigger down there as we age… but this is crazy. I have no aged, yet!

I was warned that I might gain weight, so I needed to keep up with my exercise and healthy eating- that hasn’t been an issue at all. I get hormonal weight changes and bloating- sometimes up to 5 lbs- and that;s new, but only lasts a day. My waist is still the same it was the day I started the meds (maybe an inch smaller, even), but my butt… that’s a whole other story.

I had no intention of going through any of the physical changes of menopause at the ripe age of 27! Since I am, I guess I will just embrace my butt and do some extra squats! Let’s hope nothing too weird happens to my body before this is all over… and let’s hope my butt doesn’t get too much bigger, I have a wedding dress to fit it into!

PS Please don’t let me start growing random hairs just yet. Please. I am not ready for that, not yet!

A Return to Normalcy

Though, for America and Harding that was WWI. This is my WWII.

Isn’t that comparison so strange? War and Cancer. I think I may have read something about in a blog not too long ago… maybe? I don’t know. But it is oh so weird sometimes… (but I use it when I talk about my support system- or as you guys know them, my ‘cancer army’).

If compared to war, it’s more like the days of the draft and less like now, where we can choose to enlist. I had no choice. I never made any decisions that led to my disease (either time), which I constantly want to point out when people compare cancer to things that, at some point, involved a choice.

I had no intention of this post going in this direction, but my choice in title led me here. Oops.

The word of the day is choose, I guess!

I have chosen to return to work! My body says go for it on a few levels.

Ill explain.

I went back for a few shifts and completely ruined recovery from surgery. I became a swollen achy mess. I wound up back in the wheel chair and it was really unpleasant for me! That little taste of my previous routine was wonderful.So, I sat and sat and sat and MADE FLOWERS for the wedding (as many of you have been pushing me to do to get my mind off of things) and learned to relax again, despite pains and swelling and cancer junk.

Over the last two weeks I have added more and more activities to my day or week. For a while, all I was really doing was going to the bathroom by myself! Slowly, I started going up and down there stairs by myself. Then we stopped using the wheel chair at grocery stores for short trips, then longer, bigger trips. Then we took the chair out of the car! It was incredible. Im still jubilant over that (Why don’t people say jubilant more??!)! Then I started walking Albus every now and then (by that I mean… 2 times a week) and eventually every morning. Now I walk him every morning and sometimes in the afternoon, with only a little help from others when i am not able.

Over time, my activities could increase because the swelling stopped being so extreme and about 2 weeks ago, it became almost nonexistent. I won’t say it’s gone, because this past weekend I really did quite a bit and have just the littlest bit of fluid under my skin.

I have no idea why this much time was necessary. From my start over point, it has been about a month and a half, I guess. Now that I don’t have any pain, it was totally worth it.

My only issues with returning to daily life are due to my exhaustion. I think part of that is due to my lack of activity, so, I’m starting off slowly at work. I have 3 half shifts this week and they are on light days. Hopefully we can build them back up and I can build back up in my work outs, too. Right now though, this will be me ‘taking it easy’.

Is anyone out there on Tamoxifen? Are any of you experiencing extreme fatigue?! I think mine is worse at about 2 hours after taking it, then it does not get better.

Do you know how bad I want to do a push up? I really want to do a push up. I never thought I would say that.

No worries, though. I’m being good and building to that point in my work out.

Now it’s time for some photos from my huge weekend!

The first two paper flowers I made. These are about as big as my head

The first two paper flowers I made. These are about as big as my head

Most of the family at my grandmothers surprise birthday dinner.

Most of the family at my grandmothers surprise birthday dinner.

Me and my cousin Ella

Me and my cousin Ella

Me and my cousin Audrey. Showin off tattoos and crutches.

Me and my cousin Audrey. Showin off tattoos and crutches.

The next two are of me and two of my best friends in the whole world, at a dinner for young adults that have survived childhood cancers. Amanda and I have known each other for about 15 years and Tina and I have known each other for about 12 years.

Me, Tina and AmandaAmanda, me, Tina

And that’s it!

I was so exhausted after the weekend that it took me about 2 days to recuperate! I looked so tired that people even told me I looked tired! haha