Don't think I don't think about it

"It doesn't happen overnight but you turn around and a months gone by and you realize you haven't cried not giving you an hour or a second or another minute longer, I'm busy getting stronger."

                                                                                                                                     -Sarah Evans

IMO, That's the number one post treatment goal. To wake up one day and say to your self, "Hey, I didn't think about cancer yesterday, or last week or better yet... last month." That's it. It seems so simple.

I think in the best of situations that is possible. Most women diagnosed with BC are strong enough to return to some semblance of normalcy in due time. How long it takes exactly depends on many factors. Was the cancer invasive? Did you have chemo? How sick did you get? Can you take hormonal treatment? What kind of chemo did you receive? Where was your radiation? How many did you need?

I imagine taking tamoxifen/arimidex for some women is a comfort and for others a daily reminder. The same goes for the effects of chemo. Completing a chemo regime may be a sign of being cured for some, while others suffer frustrating side effects like early menopause and cognitive problems.

For me, it's the knowledge that Metaplastic BC has a propensity to recur early. It's the fact that MpBC is thought to be chemo resistant. My post treatment days are filled with thoughts of these possibilities. I've managed to keep busy and during working hours it's easier (but not always possible) to avoid thinking about cancer.

I was doing pretty well by my estimation, that is until I noticed my "bad side" was a little bigger than my other side. I ignored it for a few weeks mostly just thinking it seemed "odd" but also assuming there was a normal explanation for it's enlarged appearance. The problem is.... well, this IS the problem with NOT thinking about cancer. How am I expected to NOT think about it? Do other women have one breast that suddenly swells?

Then... I felt it. A new lump. Or was it? Over the next few weeks it was easy to be drug back into a "cancer funk." At some point, I had to call the doctor. I had checked and checked and the lump was still there, it wasn't my imagination. You see? It's not easy to stop thinking about cancer. There is always something to bring you back to the daily reality of it.

Calling the doctor, making the appointment, checking that the lump is still there everyday while waiting to see the doctor, it's all so maddening. I'm supposed to be done with this. I'm supposed to be better. And so, it is even more maddening when you see the doctor again, hoping really just to be sent home with a stern warning to relax, with a lecture on how everything is OK and to stop thinking about cancer... but instead the doctor feels the lump as well. And, another too.

And, you're back.... back to that place.

It's only been four months but you need a new mammogram.
The radiologist sees something as well.
A quick sonogram.... yes, that's something. No, they are not cysts.
A new biopsy on two new spots.

And, now.... the waiting and thinking... thinking about cancer, again. You see, it seems so simple....

Don't think I don't think about it

I was in the middle of this post when I ran across this link on twitter:

Cancer is a lifetime diagnosis

Everybody's talking

It's a funny thing when you have a rare or aggressive form of cancer. Simple questions are hard to answer.

Friend: "Hey Maria (Gal, Girlfriend etc....) What's up? How are things going for you?"
Me: "Fine, Fine. I'm all done with my treatments and as you can see my hair is growing back."(Smile)
Friend: "Oh, so glad to hear it is all over for you."
Me (with a little less enthusiasm) "Yes, it's all done."

I've probably had that exact conversation 50 times in the past few months. Someone asks how I am and I tell them I am fine. Usually for a brief moment I consider telling them the truth... but I never do.

I never say, "Well, I'm done but now I'm just holding my breath for it to be back."
I never say, "There is really no way to know if the cancer is gone."
I never say, "There is a higher than normal chance that it will come back."
I never say, "This cancer is known to be chemo resistant."
I never say, "I could have done all of that treatment for nothing."
I never say, "It's very rare."
I never say, "It can be aggressive."
I never say, "The first three years are the most critical."
I never say, "I'm still scared."

I just say, "I'm fine" and while they are talking and telling me how great it is that it is "all over" and how well I did and how I am a survivor... I just think about those other things, but I never say them.

"Everybody's talking at me, I don't hear a word they're saying, Only the echos of my mind."

Everybody's Talking

Sticks and Stones

 Warning: You've probably heard this before so if you read on, you're going to hear it again, from me.

While reading my twitter feed the other day I came across a tweet from Lisa Bonchek Adams. She said, "Thank you for reading, for sharing, for coming on this admittedly crappy road with me. (you will see I never say "journey" ever" 

It made me wonder why she didn't use the word "Journey." So I asked, why won't you use that word? She replied, "it is only my opinion, but it makes it sound fun, or more "light" than it is. A metaphor for a major life trauma." Then she added, "it gets SO over-used with cancer. So I don't use it. Like the war metaphors. I try to use other words."

That got me thinking about words I no longer understand or maybe I know longer even like. 

Of course "Survivor" is number one. I don't think I am alone in that. It just implies so many things I don't believe. First and foremost that I survived. When anyone calls me a survivor I always think to myself, "HA! that has yet to be determined!" or "Who says so?" 

I know why some women feel the need to give themselves this title. A little emotional boost to put an exclamation point on the end of their journey...uh, er....treatments. That's fine, if they feel the need to feel better inside - but me, I'm a veteran, I've done things in my life that were physically and mentally demanding. And, I did them by choice and stayed with it through sheer strength of personal will. 

Cancer has not been the same. No amount of personal will power can change the outcome. No amount of determination will kill cancer cells. I can't concentrate on each cell in my body and effect an outcome. If it get's me, it won't be because of some personal failing on my part. 

Which brings me to the word "Fight." I like the word "fight." I've fought battles with my weight, I fought with my siblings, I've fought for career advancement and I've fought for love.  But when applied to cancer it doesn't fit. It implies (again) a measure of control that I simply don't have with this disease. The idea that all of the women who have succumbed to cancer have somehow failed to "fight" hard enough is preposterous. And so "fight" makes this list easily.

And now for the words I no longer understand. Two are on my mind right now. Recurrence and Remission. BC (before cancer) I thought I knew what it meant when someone said they were in remission or that they had a recurrence. For one thing a recurrence implies (to me) that something has gone away and now has returned. But I don't think that is true. It is more likely that it NEVER went away, that the cancer was never completely killed off so it's not really recurred as much as it is reinvigorated. Maybe re-detected?

Cancer is first discovered when it becomes a detectible mass. The mass is removed but some bits are left behind. Those then start building up again until they become detectible. The cancer didn't go away. It was always there. So, I don't like that word because it doesn't tell the whole truth and people without cancer don't understand it's true meaning.

IMO, it's like the word "remission." Remission is a word that should only be used if you have a recurrence. (Or a re-detected?) Again, it implies something that is not true in every case. The problem is the medical community uses it to hedge their bets.

The dictionary says remission is, "a temporary or permanent decrease or subsidence of manifestations of a disease."

However, that makes it sound as if (in every case) the cancer is always there, it's just not active now.

Your average Joe, however, may use "remission" in lieu of the word "cured." If you are cured you're not in remission, waiting on the cancer to become active. If you're cured, you're cured. Cured is such a better word to use. It's definitive... and accurate for many patients. On the other hand remission is only accurate if you aren't cured. The problem with remission is you don't know you were in it until the re-detected (recurrence) proves it. Follow?

Maybe it is a "remission" for other kinds of cancer. Maybe blood cancers are always there and the best that can be done is to temporarily beat them back. But I don't think that is the case for breast cancer.

So that's my list. For now. Thinking about words differently is just another way cancer has changed me... but that's a list for another day.

Couldn't make up my mind on a song:
Sticks and Stones
Words

 

One thing leads to another

The other day I put on my new glasses and climbed in the car. I was driving to see my cardiologist about an ahrrythmia that I think developed from taking Effexor for serious hot flashes caused by the chemo induced menopause. Whew. That's a mouthful but more importantly, that's the slippery slope. Once you are on it, it is hard to get your footing and get off.

I see (and hear) a lot of talk about Chemo NOT being the cause of all of these medical issues. Even though more doctors acknowledge that chemo brain is a real thing, there is still some debate. My eyesight got worse during chemo. Was it the chemo or was it just age? The eye doctor said my eyes were going to deteriorate eventually so this was just part of my natural aging. The hot flashes? Well, let's face it I would have gone into menopause some day, hopefully a few years later but eventually it would have happened.

But here is where things started to get complicated. I decided to do something about the hot flashes. I heard others were having two or three a day while I was having them every hour! Something along the lines of 12 or 14 every day AND the night sweats as well. I thought it couldn't hurt to ask the Onc what to do about them. He said to try Effexor. It works well for many women.

I wasn't too keen on taking an anti-depressant. I try to avoid taking any drugs but those damn hot flashes were really getting to me. I thought, "what the heck I'll try it." So I did. From the first day I felt a little off. I was nauseous almost immediately but that subsided in the first week. By the end of a month I was noticing my heart "racing" or "fluttering" or skipping beats. On my next visit to my Onc my problem with my heart was confirmed. And so now I am sliding down the slope. I have a new kind of doctor and new tests to take and possibly new medicines in my future.

One thing leads to another. If I had just put up with the hot flashes would I have avoided this? I don't know. Maybe I would be having this problem anyway. Maybe it wasn't the Effexor. Maybe it was the Adriamycin. All I know for sure is that a year ago I was walking on smooth and level ground and now I'm on a slope and I can't seem to get my feet planted in a secure place.

One thing leads to another

A comment from one of the women in my support group.

"...afterward we're expected to pretend like our bodies haven't been assaulted, our hormones are now fine, and we haven't been through hell." 

It's not my time

It's always something.

I believe there are two kinds of post treatment women: those that always think it's something and those that always hope it's nothing.

What is "it" you ask? Well, "it" is a twinge under your arm or a sharp pain under your nipple or a bruising feeling on your sternum.

To be fair both kinds of women hope it's nothing but the former immediately suspects something is wrong while the latter tries to secretly convince herself it's nothing to worry about- while worrying about it anyway.

The question we all eventually face is when to find out if it is something. How long do you wait? When do you call the doctor or mention it to your spouse? If something hurts, even a little, on or near your breast - especially the "bad" side - how long is reasonable to wait for it to go away?

To me it's like walking a tightrope. Too far one way and I'll end up looking like one of "those" patients, the kind that drive their doctors nuts and come off as hypochondriacs to others. That's a big deal to me. It's important to me to be reasonably sane in the eyes of the world and especially my doctor. Crying wolf was strictly prohibited in my mothers house when I was a child.

And, if you lean too far the other way... well I don't want the word metastatic added in front of the word patient when they call my name at the doctors office either. I'd rather be a living drama queen than a dead anything.

So when answering this question, the stakes are high for both kinds of women but especially so for the woman that is more afraid of hypochondria than cancer.

It's not my time:

Burning down the house

Pssst. Hey, over here.... Can you keep a secret?

I almost burned down my house. No, not when I was six. Today, two hours ago. How'd that happen, you ask? Well, I was making something in the oven and I forgot about it.

Bet you think I'm over 80, right? Well, no, I'm only 48 but I recently had chemo and this is what happens. Chemobrain.

A couple of years ago I went to see my folks in the midwest. One day my husband and I found my mom at her door with a towel waving it around like mad. She had left something on the stove and it has slowly burned down until it was burnt to the pan and smoking up the house like hell. My mom had helped me out once or twice conveniently "forgetting" to tell my dad about an incident with the car so I thought it was only fair I return the favor. We threw out the pan and helped fan out the house so dad would never know.

At the time I never imagined I would forget something like that, at least not until I was my mothers age and yet here I am, unable to remember I turned on the stove when I was sitting only feet away from it.

And, for the record, I didn't just let the food burn a little. Heck no, I let it CATCH FIRE in the oven. I didn't notice it was burning until smoke was filling the room and setting off the alarms. In all my 25 years of marriage I have never had a more scary incident in the kitchen.

The worst part is it comes at the end of a long week of confusion. Multiple times throughout the week I felt not only distracted but downright lost in the middle of important conversations. My boss was explaining a new direction in our strategy and while he was speaking I was unable to focus on what he was saying. I couldn't formulate questions I wanted to ask or remember what he said. Not five minutes after the discussion ended I couldn't summarize what we had discussed to a co-worker.

My chemo ended in mid July and I had noticed some problems with word recall. I'd have trouble thinking of a word that would normally be tip of my tongue. But this.... this is different. This has scared me. After that meeting with my boss I was trying so hard to remember the core of that conversation, I was so frustrated.... I wanted to cry, actually sit down and cry right there at work.

Some think chemobrain doesn't exist.

It does.

I've got the burnt pan to prove it.

Burning Down the House: