A Big Day

I can't believe such a big day is here already.

Where did the time go? Yet - it seems like it's been forever.

I've managed to skip over other big days (like the day I had my double mastectomy...)

And here we are. Today. The day I get my last round of chemotherapy. I hope it's the last time I have to have chemotherapy ever.

There's been so much that's happened, that's swirled around in my head and never made it into writing.
Hopefully, I can remedy that.

But probably not today.

Today, I'm going to be celebrating with loved ones that it's the last dose.

Please, let it forevermore, be the last dose required...

A Funny Thing Happened...

So I'm leaving Target a little while ago after getting a few last minute things and as I'm walking to the car I hear this rather annoying ringing; a high pitched, continuous drone a little like an emergency signal, but not as loud. I look around and around and have no idea where it's coming from. I get in my car and drive away hoping it was something in the Target parking lot. However, as I drive it becomes clear to me that it must be my car. Something in my car is making that noise but I can't figure out what. I hope it will stop when I get to Walgreen's and turn the engine off. But no. It continues. Argh. I will deal with this when I get home (or my husband will) . I enter Walgreens and lo! I am still hearing it!! I walk around trying to concentrate on what I need to get, but can't because it must be my own ears! Is this some weird side effect of chemotherapy?! Is something wrong with me? What could this mean?? I can't think straight - it's driving me crazy! - so I approach the pharmacist.
"Excuse me, I'm sorry I have this ringing in my ears and I can't..." (I need her to tell me where to find the antibacterial soap...)
"Oh, no, it's not just you - I hear it too!" Whaaa?? So does the other pharmacist.
"I've been hearing it all the way from Target!" I tell her. She looks at my purse. "I think it might be coming from there" she says....

So apparently I'm not going crazy, and there's nothing wrong with my ears, but folks, I am experiencing a weird side effect after all. I believe they call it Full Blown Chemo Brain. (stupid Ocarina iPhone app....)

By the way, my double mastectomy is tomorrow morning. I'll have much more to say about that later.

For now, I'll just enjoy the giggle from this afternoon. 

Yeah, Not So Much.

Just like this, it hits me. My limbs go heavy, my head goes heavy, my eyelids go heavy, queasiness wells up from my stomach into my throat and the room spins. My brain dissolves to fog. All of a sudden, out of nowhere, the toxins have kicked in.

Feeling so damn dizzy. Don't want to move my head too fast. Feel like I can't think straight. Just want to close my eyes and lay down. By morning, I'm probably not going to feel capable of lifting my head from my pillow. I will feel as if I have turned to stone.

I've been off of chemo for roughly a month (thanks, Angry Boob) but now we've started back on.
My chemo was this past Tuesday.
Up until an hour ago, I was actually feeling all right.

This is what is so hard to explain to certain people when they ask how I'm doing. When they try to gauge how I  am.

It's hard to explain the nature of this Beast called Chemotherapy to anyone who isn't living, or hasn't lived, with someone who's going through it.

Just because I'm talking to you in one moment, in a positive mood and looking "good" (as you adamantly state, almost accusingly, as if this Beast isn't really so bad; as if you want to deny that it is taking any sort of toll on me...) it doesn't mean I'm going to be feeling that way an hour, two hours from now...or tomorrow...or the next day.

I hate that I cannot tell you with certainty that I can attend whatever function you want me to attend. I hate that I hesitate to accept any invitations whatsoever. I hate that you seem to think I'm lying whenever I do reply "I'm not feeling so good".  Just because the last time you talked to me, I was not curled up in a fetal position on the floor and hoarsely sobbing. Just because I said I was doing "okay"...that moment, that day...

Pardon me if I'm not behaving the way you think I should. But, I am the one who has cancer. Not you.

And I'm going to say right now that you should just eliminate the adjective "good" for the immediate future in reference to how I may be feeling.

I may be feeling "okay".
I may be feeling "all right".
I may be feeling "better".
But I am most definitely not going to be feeling "good" until I'm done with chemo.
I am not really, truly, going to be feeling "good" until this cancer is gone.

So just quit asking "Are you feeling good today?"

Cheer or Snarl?

Not sure how I'm feeling.

Have I mentioned yet that I am not usually a black/white thinker?
Have I forgotten to mention that quite often I feel like two completely different people? I am constantly thinking "Well, on one hand I think x,y,z. On the other hand, a, b, c is completely understandable and a reasonable stance to take".
Wait. Perhaps "indecisive and wishy-washy" is a more accurate description.
Of course, maybe it's just that I'm open-minded and insightful enough to realize that I am not the ultimate, authoritative, torch-bearer of The Truth.
See? There I go again.

Here I go again.

On the one hand, I feel like writing, blogging, whatever you want to call it...about the cancer, depression, Mysteries of Life In General, stuff that swirls around in my brain.
On the other hand, it's all a tornado of words hurling about that resist being rescued in time to record. Words and ideas that I feel too overwhelmed and tired to chase after. Words which I wonder even matter.  Especially after a day like yesterday.

Not that yesterday was more of a doozy than other days I've had.

We went to see Infectious Diseases Dr. and she feels that since Angry Boob is not looking any happier after one week on intravenous antibiotics, and since she is too risky to do any more biopsies or cultures on, and since she has delayed chemotherapy for about a month now, we're just going to give Angry Boob another week of the IV antibiotics and proceed with chemo. It's looking like Angry Boob is not necessarily an infection, but could well be just a drainage problem because of the lymph biopsy.
Lymphedema in the breast.
(Which, frankly, sounds like a better deal to me. Better to get it there, perhaps, than in my arm; after all, the breast is gonna go eventually. Maybe, hopefully, the lymphedema will go along with it. A woman can hope.)

So, after Infectious Diseases Dr. we were sent over to my Oncologists. They were in agreement with the Infectious Diseases Dr. and we discussed our options.  We can continue with the chemo plus the IV antibiotics and keep an eye on Angry Boob; if she gets worse, obviously we will stop, but if she just stays peeved, we can keep going and complete the trial. Or, we can stop chemo completely and proceed to the mastectomy.

At this moment, I feel compelled to mention that during the last ultrasound of my breast, they noticed that my original tumor had shrunk a little. I remember that earlier on, after I'd had a few rounds of chemo, neither my Oncologist nor my Surgeon could feel the tumor easily any more, which had up to that point been felt because it was pretty close to my skin. That, of course, made me quite happy as it indicated that the tumor was shrinking.
Yesterday, however, my elation was taken down a few notches because he informed me that yes, while it had shrunk, it hadn't actually shrunk that much. I believe "not a very significant amount" was how he phrased it. Well, damn.

I opted to continue with the chemotherapy trial. I'm just not ready for the mastectomy.  My mother had a good point when she said "You're never going to be ready for the surgery. No one is really ever ready for that."  I know that it is inevitable, but...just not now. Not now.

Here's where my split personality comes into play.

I actually found myself all perkily trotting off to the Infusion Center, happily lining up to get my chemo and my IV antibiotics yesterday after the appointments were over.  I had not planned on this that morning, but they wanted to avoid delays any longer...and so did I.  We'd gone in at 10 a.m. and ended up leaving in the evening around 6:30 p.m.

Happy to be starting chemo again??! Just when I was getting a taste of what it was like to feel good? Just when I actually had energy to do things once more? Happy despite knowing that chemo will hit me like a baseball bat to the head in approximately two days??!

But yes. It means that the mastectomy remains further away.

On the other hand, it means that I'm stuck remaining uncomfortably bra-less for that much longer, stuck with Angry Boob, stuck with these ticking time bombs on my chest...    

Angry Boob Part Two

So, I'm hooked up to an IV as I type now, because, of course, the second round of antibiotics did virtually nothing to soothe Angry Boob.

My very nice Infectious Diseases specialist decided to call in the big guns and put me on this regimen of intravenous antibiotics twice daily for seven days. Each treatment takes roughly two hours. Currently I am on Day 4 and am already so very tired of it.  Not to mention, I'm not seeing a dramatic change in Angry Boob, but perhaps I am feeling a bit impatient at this point; it is only Day 4, after all.

My doctor told me that we had the option of putting me in the hospital for these treatments or having them done at home.  She told me she felt I would be happiest having them here.

No, I was shaking my head inwardly. No, I wouldn't.

I would actually prefer being somewhere where trained professionals took care of all the bags and tubes and assorted paraphernalia and kept track of the timings, etc, etc.  I'd prefer to be receiving treatment somewhere where there's no fur or dust floating about that could possibly contaminate things and where there's not the remotest possibility of a young chocolate Labrador Retriever knocking over an IV stand or trying to crawl up into my lap while hooked up to said IV stand. Where a 7 year old boy isn't going to look at an IV stand and see a really cool new toy.
It might even be a bit of a mini-vacation from domestic life for me. I could rest in bed, in peace and quiet, and not have to think about Angry Boob's treatment while simultaneously worrying about the dog's medicine and the cat's medicine and how messy the house is and where the kids are and what they're up to.

Outwardly, I smiled and said "Of course" because, after all, I really couldn't leave my husband to deal with the kiddos and the pets alone for a whole week, and I really didn't want my kids to deal with having a mom away in the hospital for a whole week. Eventually I know they will, but until it's an absolute necessity, why do it? Never mind the bill.  I mean, our insurance has been great so far, but still - the whole necessity thing.

So, here we are. Me, Angry Boob and the IV.  Did I mention the whole process takes a little over 2 hours? Twice Daily? It's a lot like being ball and chained for 4 hours out of your day.

Then there's the issue of not being able to wear a bra. More so than being bald (way more), going bra-less causes me great discomfort and awkwardness.  My breasts have always been on the larger than average size.  They've always been a source of self-consciousness, as a matter of fact. Throw in that I've had two children whom I've breast-fed and my age and let's just say the girls need some support. They need a smooth ride. They need seat belts. Without that, I just cannot walk around in public without holding my arms awkwardly in front of them in a protective, unsuccessful attempt at camouflage and containment. I end up looking like I'm somehow related to a T-Rex.

The cold front that has moved into Texas isn't helping matters much either. Enough said.

Also? I'm not supposed to get my portacath wet and I'm so anxious of doing so, that I've avoided a shower for the last four days.
Oh, all right, I've avoided getting anywhere near bathing.
I know that I should be able to cover it with plastic, but we don't have any plastic wrap in the house, I keep forgetting to get some, and I'm not convinced the plastic sandwich baggies are foolproof.  
I'm therefore rendered not fit for public consumption.  

Basically, Angry Boob has taken me hostage.

My Angry, Left, Boob

Angry Boob made her appearance a few weeks after I'd started chemotherapy. Or maybe it was actually two weeks after.  No, it was several, because I was bald already...I'm horrible about keeping track of time; I really should start writing down exact dates.

Anyway, all I remember is that I was getting ready for bed and I removed my bra and BAM!
Holy crap! What is that?! WHY is that?! and It hurt like hell.

Facing me in the bathroom mirror was an engorged and indignantly red breast. It was my left, definitely cancerous, breast. When it fell (because that's how it felt - like a bowling ball falling several inches), pain shot through it like you wouldn't believe. I immediately freaked out because, unfortunately, much to my chagrin, that is my usual, right off the bat reaction to a nasty surprise*

* although, very strangely, it wasn't my first reaction when receiving the news that I did, indeed, have breast cancer.

It was a Sunday night (of course; because these nasty medical surprises always tend to occur when your doctor's offices are closed). Should I go to the ER? What was it? Was it going to kill me? (like, much sooner than I was already fearing?...) I took a deep breath and remembered that my doctor and his staff said I could call them anytime. So I sat down on the edge of the bed and did.

I described what it looked and felt like and my nurse seemed relaxed about it and told me to take a pain reliever, keep an eye on it, and call them in the morning. If it wasn't better, I should see them.

The next morning, Angry Boob's tantrum seemed to be over. Sure, it was still a little swollen, but that was already expected because of the fluid build-up after my lymph biopsy. I didn't have a fever and my biopsy incision looked fine. So I didn't go in to see the doctor.

Over the course of the next month or so, I started noticing that Angry Boob didn't like bras very much anymore.  She would always turn enraged after a day of being in them. But after a night of freedom, would calm down.

A couple of times I called my surgeon's office to report that Angry Boob was being difficult again, but by the time we got  in to see them She was a little embarrassed to show her face.

Of course. Because apparently my boob is a lot like a car that's making a god-awful racket. When you get into the garage to see the mechanic, it quits.

 He couldn't see any evidence except the swelling and we decided that I just needed to avoid bras or find one that wasn't so constricting. Which I found extremely difficult to do.

So, the week that my cell counts were too low to do chemo, I had been shuffling around the house, bra-less. All week. After all, I was just laying around in bed or on the couch. Chemo was really getting to me.

It suddenly occurred to me while in the restroom (once again, on a Sunday night...) to take a quick peek to see how Angry Boob was doing. Surely, at least, all this freedom She'd had lately, had placated her into a Happy Boob.

Hoo-Boy, was I WRONG!!
She was so pissed that she was going to hold her breath until She turned almost purple.

And I suddenly had a horrible, horrible, fear that it might be something I dreaded even more than the cancer I knew I had. It was the Breast Cancer That Shall Not Be Named (for now).

This time Angry Boob was serious. This time the doctor saw exactly how She'd been behaving. We had to call off the chemotherapy until this infection was cleared up. He prescribed an antibiotic and mentioned that if it did not do the trick, he would refer me to an Infectious Diseases specialist.
Wha-?!

Of course, it did not do the trick. Angry Boob was on a rampage.

In the meantime, a little voice, aided and abetted by too much internet scouring, kept whispering about the Breast Cancer That Shall Not Be Named (for now)...

I freaked out after seeing the pictures that looked just like Angry Boob. Freaked out after reading all the symptoms that sounded just like Angry Boob (and I do mean freaked out and in tears) :

Swollen to almost double the size of the other breast; warmer to the touch; redness; tenderness; no palpable lump; can occur suddenly - overnight even; an orange-peel texture to the skin; tendency to occur at younger age than when most other breast cancers are diagnosed (I'm 45; no spring chicken, but according to my doctors, still relatively young to be diagnosed...); no fever in the patient; not responding to antibiotics;
looks like an infection.........

Back in my surgeon's office, I finally dared name my fear: "Could it be possible that it's Inflammatory Breast Cancer?"*

*What's so fear-inducing about this type of cancer, you wonder? Well, it's extremely rare, but also extremely difficult to treat and even more aggressive (read: rapidly spreading) than the aggressive sort of cancer I have right now (Triple-negative). Unfortunately, I read not one calming, encouraging, article on Inflammatory Breast cancer. I am truly, truly, hoping for those that do have it, that better information is out there somewhere and that I just didn't see it. I hope that more encouraging information is found in the offices of the doctors who are treating patients with this. I would be lying if I said it wasn't scary.
 I would be lying if I said any kind of cancer isn't scary.

"Well, it is highly, highly unlikely for you to have developed another cancer* while undergoing chemotherapy, but anything is possible (I've found that a lot of doctors tend to say this - "anything is possible") but to be on the safe side, for peace of mind (so grateful he recognizes the importance of this for cancer patients) we're going to do a punch biopsy. We will have the results in roughly 48 hours."  In the meantime, I was off to see yet another, wonderfully nice, doctor - the Infectious Diseases specialist.

*During my crash course 101 with cancer, I've found out that a person can have more than one type of cancer at the same time. I had no idea before. It's possible to have two types of tumors in one breast, or one type in one breast and another in the other. There's apparently all kinds of variations. "Cancer can be strange", another highly esteemed oncologist was to tell me later that day.

Chemo was suspended indefinitely.  I was prescribed a stronger antibiotic and told to give it a week. If Angry Boob was not over it by then, we would have to move on to intravenous antibiotics.

Guess what happened?




  

Time Flies When You're Not Having Fun

or you're in a chemo-induced funk.

So, it's December already and where have I been?

Mostly shuffling between bed, the bathroom, and the kitchen. Oh, and the computer. Mostly to just surf in a sort of fog.

Mostly going between home and the medical center here in town (a good 45 minute drive when traffic is decent). Life is centered around doctor appointments.

Though there have been "better days" in which I've made it to various visits with friends, book club, eating out with the family and taking the kids out to do something fun, most of those "better days" have been during weeks in which I could not take my chemo for various reasons. But I'm getting ahead of myself...

Let's return to September...

I'd had an MRI that had discovered "something" in my right breast as well, and I was going to have a biopsy of it, except the results came in from my genetic test that rendered the procedure "moot", to quote my surgeon. Lo and behold, I was also positive for the BRCA-2 gene, which puts me at a much higher risk for ovarian and other types of cancer. Bit of a shocker since I'd had no history of cancer on my side of the family. Okay, one much beloved, great-aunt who'd died of lung cancer; but she smoked like a coal stack, and a cousin with cervical cancer (which is not generally considered hereditary).

I had gotten my head around the idea that we would be doing a bilateral mastectomy.  I knew that my ovaries would need to be removed because I tested positive for the BRCA-2 genetic mutation. We'd already discussed the breast reconstruction with the plastic surgeon. It was all going to go down on the 19th of September. Things were moving fast, which is what we were ready for at the time. Rather, in our stunned and slightly panicked state, we were sufficiently numb enough to hold our nose and jump on in. Just get it over with.

But wait! We hadn't met with the oncologist yet! We'd already made our decisions, but we did at least need to meet with the person who was going to handle the post-op chemo that we knew was a given. Off we went on Sept.13th for a 2 p.m. appointment . And a few hours later, off we called the surgeries. Well, at least the most traumatic one.

My sweet, doe-eyed Dr., whom my kind and trusted breast surgeon recommended to us, filled us in a little more on the particular kind of breast cancer I have, what research is going on, what has been discovered, and what options (and their success statistics) were available at the moment. Suddenly, I wanted to slow down. Suddenly, I felt a reprieve of sorts. I've always been a procrastinator, so maybe that's what drew me in. Ah, my comfort zone: something dreaded has been put off!

"The standard issue of care that we have now started out as a clinical trial. The lives saved today are in large part thanks to women who agreed to undergo clinical trials in the past". I didn't feel any pressure whatsoever from him to participate. He made it clear as we spoke that he was concerned about my particular case and my particular health and in my particular comfort level with whatever decision I chose. His job was to make sure that I had all the oncology options explained so that i could make the best decision for myself.  I've been so fortunate that all my doctors thus far have had this attitude and approach. I appreciate how they all consult with each other, seem to respect each other, and do the same with me.

Basically, I have just as much a survival rate with the mastectomy and then chemo as I would in participating in the chemotherapy trials first and then having the surgery.

What appealed to me about participating in the chemo trial before surgery were two things:

1) We could get a jump on any AWOL cancer cells. "The cancer that is in your breast is the cancer that we already know about. It's the cancer that we may NOT be aware of that is of more concern".

2) I liked the idea of helping others. If I have to have something that sucks this much, by God, if I can, when I can, I'd like to pull something good out of it.. Don't want Cancer getting the last word.

Okay. There was a third thing:

3) I didn't have to say good-bye to my breasts just yet. They may be trying to kill me, but I just wasn't truly ready to let go. Not sure I'm ever going to be. That's a subject for a different post though.

So, I had my oophorectomy on Sept. 22, along with a lymph node biopsy to make sure Cancer hadn't spread there yet (and it hadn't! Whew! and my ovaries looked good! Whew.) and to install my port (the catheter that I'll be receiving my chemotherapy through).
On Sept. 27th,  I started my chemotherapy treatment, participating in a new clinical trial.
The plan is to undergo chemotherapy once a week for 12 weeks, then have the mastectomy and then follow up with more chemo. The pre-op chemo is part of the clinical trial and the post-op chemo will be the current standard of care therapy.

Radiation has not been ruled out, however. That's sort of the wild card at the moment.

Oh, who am I kidding? Cancer, and all that it encompasses, is the wild card. Always is. Never know what it's going to do. Damn attention hog.

I'd finished 6 rounds of chemo and then my white cell counts dropped too low. So I had to skip a week.
I was able to do a 7th round and then....Angry Boob showed up (again, actually) and refused to leave.

Angry Boob is what I'm dealing with now. Angry Boob requires her own post.