The Echocardiogram and Other Stuff

Another visit to Trident Medical Center under my belt, and another great person in their radiology department.

An echocardiogram is an ultrasound of the heart. The purpose of this test was to have a baseline, we’ll do more periodically to see if the chemo effects on my heart.

So for the echocardiogram, I only had to put the gown up top. She put the little wand over my heart, then below my heart. I had three wires attached to leads on my chest. It took about twenty minutes total. Easy peasy.

It was neat to see the pumping of my heart on the screen, hear the whoosh whoosh, and see the valves flapping. Cool stuff. I guess everything was OK, the tech said she wouldn’t let me leave if it wasn’t, but she couldn’t really say anything specific – wasn’t allowed. Which is fine, I get it. I’m sure my oncologist will tell me all about it.

In other news, chemo starts Monday!

Originally, the port placement was supposed to be Monday, but that would put off the chemo, and they’d rather do the opposite and get the chemo started ASAP.

I’m a little nervous, mostly because I’m imagine it burning through my veins or something equally as devilish. I know it won’t, but whatever. I can think what I want to think.

I believe I mentioned that the first dose will be a loading dose, so it will be a little longer than subsequent treatments. I’ll probably be there from 8:30am until 4:30pm. I have a bag I’ll be loading up with goodies to keep me (and Brad) occupied and comfortable, like a blanket and snacks. Gotta have the snacks! I’ll probably throw in a deck of cards, Phase 10, Trivial Pursuit, Monopoly. Hey, we have ALL day, we can definitely play some Monopoly!

I’ll share about the chemo on Monday or Tuesday!

Telling People

Cancer is a big freaking deal. It’s something that creates fear, panic, worry, sadness, and pity. For me, it wasn’t something I wanted to blab to anyone who would listen. When JP first showed up, I didn’t want to create unnecessary worry, so I carefully picked who I was going to tell.

I started with my husband, for obvious reasons (who practically started planning my funeral before I even had a diagnosis – hence the reason I waited to tell even him, he’s such a worrier).

Then I told my boss because if I did receive bad news, I didn’t want to blind side her. I do ABA therapy and I work with six different families across ten sessions Monday through Thursday. It’s a pretty big deal and if impacts a lot of people if I need to take a leave of absence. She was super understanding and supportive, still is.

Then, after the “concerning” mammogram and the biopsy, I told my mom. She told my dad and one sister who was in town, who told my other two sisters (which is good, because my mom may have emailed the news otherwise, har-har-har – sorry, Ma). And Brad told his family.

Then, after the diagnosis came in, I started telling close friends, and I told my boss it was OK to tell the consultants and lead therapists on the teams I belonged to, since it was likely I’d have to miss a few sessions here and there and I wanted them to know why. And I notified the program director (who is also my adviser) at my school, and my professors in case I needed to miss class in the future.

At the moment I’m typing this post, there are still a lot of people who don’t know (though the cat may be out of the bag by the time I publish it). I’m not hiding it at this point, but what do you say? How do you say it? A Facebook status that says “Hey everyone, I have cancer!”? It’s probably the quickest way to communicate the info. Not very tactful though. The information is seeping out though, so I know it’s only a matter of time before more and more people know. And that’s OK. I don’t mind people knowing and I don’t mind talking about it (clearly). I’m not ashamed; I have nothing to be ashamed about. It’s just hard to break the news. There’s no subtle way to drop a bomb, you know?

So the people who know have been super supportive. They’re sad for me, but they’re happy I’m positive and in a good place. And I am in a good place. Will I always be in this place? Ask me again when/if I’m feeling nauseated. I guaran-damn-tee that is when I’ll be pissed the F off and crying my eyes out.

I like to eat, OK?

Priorities!

Flashback: The Mammogram and Ultrasound

I had the mammogram and the first ultrasound done during the same appointment, so I’ll talk about them together. They actually took place the morning of the biopsy, even though I already posted about the biopsy. So I’m a little out of order, but we’re almost up to date so it’s all good!

When I arrived for the mammogram, I filled out the paperwork and somewhere along the way was told that mammograms weren’t as bad as they used to be and as their made out to be. I thought, “OK, cool. I wasn’t really looking forward to my boobs being smashed like a panini.”

Ha.

It was TOTALLY like a panini press.

I have to give the tech credit, because she handled it—me, ha—like a pro. I don’t know that I could do that…manipulate someone else’s boobs into assorted contraptions. She was really great.

The left side wasn’t so bad. It wasn’t comfortable, but it wasn’t terrible. The right side, where JP resides, eh. Remember I mentioned the tenderness? Well, as much as JP didn’t like me being all grabby-grabby with him, he liked the panini boob press even less. He was irritated, which meant I was irritated.

So the mammogram was a lot of awkward positioning, hands, and squishing.

After that, I went for the ultrasound. Less awkward positioning, more hands, and some gel. At least it was warm.

On a different note, the facility was nice. It’s called The Breast Care Center and it was all about the ta-tas, which, I think, made it a more relaxing experience. Something about being around a bunch of female patients when having boob stuff done was better than when I had to get the MRI in a mixed gender environment.

Girl power.

Flashback: The Specialist, Another Ultrasound, and The Biopsy

Caution: Image at bottom of post. Kind of gnarly looking. No nudity, I have some modesty. (Not much left though!)

Ouch.

But let me back up.

“Concerning” is the term that was used to describe the images from the mammogram and ultrasound when I went to see my original doctor after the mammogram. I was immediately referred out to a specialist, a breast surgeon, who my doc/NP (Nurse J, I will call her going forward) highly recommended. I was able to be seen right away, which was amazing in and of itself considering it was a Friday and it’s damn near impossible to do anything on a Friday around Charleston.

Dr. JB (not to be confused with JP) is as fantastic as I was made to believe, and for that I am so incredibly grateful, and her office staff is wonderful. She’s so positive and she makes me feel positive, too, even though I am still not sure I truly know how I’m supposed to feel about all this.

So she did an ultrasound, and for the first time, I met JP. Stupid little black shadow that he is. He is sort of shaped like a boomerang, though not as slim, more like an elongated kidney shape? Maybe? I don’t freaking know. He’s there, let’s leave it at that.

Next up…biopsy…it seriously all happened that quickly. I was numbed up and biopsied. It only hurt a little bit, that’s the honest truth…a pinch when they injected the numbing agent…it was more the vibrations of what I knew was going on that was unnerving. Also some loud little snaps as they snatched up pieces of JP — I assume that’s what the snapping sound was. I didn’t ask. I was trying not to freak out at the needle in my boob.

So the biopsy was complete and I left Dr. JB’s with a slightly bleeding boob and lots of words of encouragement. She’s a wonderful person. She said all the right things and really didn’t give me the opportunity to feel discouraged. She told me I was going to get through this, that there was lots of support out there for me, and everything would be all right.

I believed her, still do. It’s hard not to.

 

 

 

FullSizeRender
This is a couple days after the biopsy. Lots of bruising and tenderness. You can see the small slash from where they went in.

The Oncologist and Treatment Plan

I met the oncologist yesterday; Dr. YB. He is wonderful. When he went over everything, he drew pictures and diagrams and dumbed everything down so I could understand the whats, hows, and whys of everything, which was refreshing because, while I know my diagnosis, I don’t really know what any of that means. So it was cool to get a visual on that.

Here’s the nitty gritty details:

Invasive Ductal Carcinoma
Estrogen positive (99%)
Progesterone positive (5%)
HER2/NEU positive (3+)

Don’t ask me to reiterate what all the doctor said…I have the visual in my head and can see and understand it, but I can’t translate it as well as he did. Haha. That information up there is how they determine the treatment, which is chemo and hormone therapy.

So scan and lab results…JP is measuring at 2.8 x 2.2 x 2.2 centimeters, which puts me at Stage IIA. There is also a suspicious node in my underarm on the right side, measuring approximately 1.1 x 0.9 x 0.8. When I have my port placed, they’re going to check that out, but it’s not going to change much in terms of the treatment if it ends up being concerning. The CT scan and the bone scan both came back clean – so hooray for that. Actually, they say “unremarkable,” which is kind of insulting, but whatever. According to my mom that’s what you want to hear…I still think of myself as pretty remarkable, though.

Now for the treatment. Chemo, obviously. And hormone blockers. And immune boosters. Quite the cocktail I’ll be receiving.

So I’m getting a port, that’ll happy on September 18th. It would probably be happening sooner, but because of Hurricane Irma shutting everything down, scheduling is all out of whack as procedures scheduled on the days offices have decided to close will need to be rescheduled and all that fun stuff. I’ll be under general anesthesia for the placement, it’ll take about an hour. It’s ultrasound guided, and this will be done by Dr. JB. While she’s in there, she’s going to ultrasound the node, and biopsy it if necessary. Again, it won’t change much in terms of the treatment plan as we’re already pretty much going balls to the wall.

I also have to have an echo cardiogram prior to starting chemo so they can get a baseline reading of my heart. Then I’ll have to go every so often to get other readings since some of the chemo drugs can cause interference with the pumping action of the heart, so they’ll monitor that closely. Also, I’ll be having ultrasounds with Dr. JB every 6-7 weeks so we can watch JP shrink!

I’ll be on 3 week cycles for chemo, a total of 6 cycles. So that’s 18 weeks total. All-in-all, the chemo/hormone stuff will last a year, but it’s chemo for the first 18 weeks, then they’ll do surgery to remove whatever is left (which may be nothing), then about 34 weeks of hormones to finish off the year. After all that is finished, I’ll still be looking at about 5 more years of some kind of preventative/maintenance therapy, but it won’t be as frequent. I’ll deal with that in a year.

So there’s herceptin, taxotere, carboplatin, and pertuzumab. I’ve linked to info pages on those drugs because, yeah…I’m not a pharmacist. That’s all administered the first day of the cycle. The very first day I get a “loading dose,” so it’s a little bit more, a little bit longer, but after that my first day of each cycle will be about 6 hours total. Lots of time for me to read, write, nap, or take up knitting. I go back the second day for pegfilgrastim, which will boost my immune system, since the first four drugs will weaken good cells, as well as the bad.

I also have a wad of prescriptions to fill. Pills for nausea (one I must take the tree days after chemo and one I take as needed), an antibiotic (to have on hand in case I have a fever and it’s the middle of the night – I won’t have to wait for it to get called in or the pharmacy to fill it), and a cream that contains lidocaine (which I’ll put over the area of the port to numb the skin about 30 minutes before I go in for chemo so the needle going in won’t hurt.

So as far as physical limitations, eating, working, etc…

I made a big deal of the potential nausea. Dr. YB was like, seriously, that’ll be the least of my worries because of all the anti-nausea meds I’ll have. He said he’d be concerned about the weakened immune system and heart stuff, and I was like…dude, I like to eat. My mom, the doctor, and the medical assistant laughed, but I was totally serious. I like to eat, I don’t want to be nauseated and not able to eat. He said I should be fine. He also said he has chemo patients who do the bridge run (which, if you’re not from the Charleston area, is a very popular 10k race). So physical activity shouldn’t be a problem, though I will have some days where I may feel like dirt and not want to do anything, and that will likely remain pretty routine with my chemo cycles. So that’s good, I like for things to be routine, even if they’re a crappy routine.

So the first day I go in for chemo will be a longer day due to the loading dose, but in general when I have day 1 of each cycle, we’re looking at about 6 hours. So where does my mind go? Yeah…I asked K, the medical assistant, a little bit about that day and she told me I could bring whatever I wanted with me (blanket, tablet, books, but not my dog – I asked). I asked how long I’d be there, she said about 6 hours. I asked if I could eat. Her and my mom laughed. Again, I was totally serious. She said I could bring food and drinks with me, run out and get something, send someone to get something, etc. So I’m all set, as long as I have access to food.

Don’t get me wrong, I know my love for food may dissipate as the treatment goes on, and I will have good days and bad days. I won’t always be Suzy Sunshine, but I’m going to embrace all the good feelings when I can. And when those good feelings include an appetite, I’m going to be ALL OVER IT.

So don’t rain on my parade, or piss in my Cheerios.

The MRI, CT Scan, and Bone Scan

MRI

What a cranky ass machine. You’d think with all the advances in modern technology, they’d find a way to make the machine a little quieter. That thing made sounds that should be only heard on train platforms and ambulances. Not quite an air horn/fog horn, but equally as alarming. Thank goodness the tech gave me ear plugs because OMG…if I hadn’t had them, I doubt I’d have hearing. It was like an error message sound on steroids, if that makes any sense at all. Like if the buzzer from the game Taboo was possessed. The occasional vibrations in the machine kind of reminded me of one of those paint mixer things in Home Depot, or an out of control printer. Maybe I’m being a little dramatic, but jeez. It was an interesting experience. I kind of expected that I’d lay down, they’d take some pictures, and voila! I didn’t expect the noise. I’m starting to reconsider the whole avoiding internet research thing so I can prepare for the next two scans.

Let me get back on track and talk about the actual process…I had to lay on a platform, face down, that had openings for where my boobs would go, then it slid inside a closed tunnel, where I rested for about 30 minutes while they got the images. I had my jeans on and a gown up top, and the tech put a blanket on top of me so I was warm. I also had to have a contrasting dye injected, so I had an IV. The tech also gave me an alert thing, kind of like the bubble you squeeze on a blood pressure cuff, to squeeze if I needed anything. I didn’t think a quieter MRI machine would count, so I didn’t use it.

Really, there isn’t much to say about this one. It was loud. I was kind of bored, and I wasn’t in a position I could comfortably nap in, if I could get passed the sound.

After the MRI I had some blood drawn, and then I was done. For now.

CT Scan

So the CT scan was much better than the MRI. For one, it was quick. The registration process took longer than the actual scan, and I was “picked up” right after I got to the waiting room from registration and immediately sent in, then apologized to for having to wait (which I assured them I didn’t have to wait since registration took for-ev-er) because they had an emergency.

I got another IV so they could inject an iodine contrasting dye. I didn’t have to undress or even take off my shoes, I just had to lower my jeans to my thighs and that was that. I was covered with a sheet and that was that.

Similar to the MRI, I had to lay on a platform, this time on my back. The CT scan looked at stuff in my abdominal area (liver, lady parts, etc.) to see if there is cancer in any of those spots. The scanner part of the machine was more like a ring, so it was very open. There wasn’t any noise, just a mechanical voice that told me when to hold my breath. The platform slid in and out of the ring a couple times, then they injected the dye. I was warned that it would feel warm, almost hot, and make me feel like I peed my pants. One of the two techs said it was sort of a warm, wet feeling. He was right, that’s exactly what it was like, like I was lying in pee. Lovely. But it was a quick feeling, over by the time I’d sat up. One more platform slide with the dye and I was done. Maybe 5 minutes total versus the 30 minutes for the MRI.

Bone Scan

Before the CT scan, I had the radioactive whatever injected into my IV. The tech who did the injection carried it in this tiny little metal lunch box looking thing. It was small, but long and narrow, with hazmat decals. I was totally singing “Spider-Jen, Spider-Jen, does whatever a spider can” in my head while I was supposed to be listening. But really, the only relevant information was that I had to come back later for the scan, and walking directions from the emergency entrance rather than the main entrance. (Which I totally didn’t remember and just parked at the main entrance. In my defense, there was NO parking spaces at the emergency entrance so I couldn’t even try to get lost.)

The injection was around 8:30/9:00, and I had to go back at noon for the actual scan. The radioactive stuff needs a few hours to go through my system and I had to drink 30+ ounces of water to help it out. I love water, I drink it every day. Tell me I have to? Ugh…water suddenly becomes my worst enemy.

Sidetrack: Every time someone talked to me (MRI, CT, Bone Scan), they ask me for my name and (almost every time) my birth date. I am seriously considering giving a wrong answer one of these times just to see what happens. But I’d need to make it creative, like Evel Knievel or Peter Parker.

Well, unfortunately no one asked my name when I returned for the bone scan so I was unable to try out one of my cool, new names. Bummer. Maybe another time.

The bone scan lasted about 25 minutes in the Nuclear Medicine room. Hehe, Nuclear Medicine. Sorry. Same sort of deal as the other imaging…lay on a platform, scoot into the machine, etc. This time I only had to remove my glasses…kept my rings on, pants on, shoes on…the whole shebang. (Note: “shebang” did not get the little red squiggly line for a spelling error, that surprised me.) Oh! And they had music on…I heard some Beatles, Journey, and more. Definitely entertaining.

So I laid down, had this velcro wrap thing placed across my ribs, set my arms down by my side on top of that, then the tech wrapped it up and over my arms and velcroed it shut so my arms wouldn’t move. It’s not as complicated as I just made it sound, I swear. And I didn’t feel restrained, there was some give. Then there was a towel wedged between my feet and a giant tourniquet/rubber band placed around my feet (flip-flops and all) to keep them steady. Again, I didn’t feel restrained, just a way to keep my feet upright and steady. (Ugh. And I had an itch on the top of my foot while the machine was scanning…talk about implementing the power of mind over matter!)

A square plate-like thing was lowered to just above my face (I assume it’s what zaps the images), where it stayed for a few minutes, then the platform slid and the thing scanned my shoulders and chest, then down, and down, and down, etc. The last part was moving back up to my head to get a scan of the side of my head, so the square plate thing turned and instead of being on top/bottom, it was right/left. Anyway, that was that! I’m kind of really curious to see the images…especially my squiggly scoliosis spine.

Proud patient moment: I was complimented by the tech on my hydration. (I managed to guzzle one big metal thermal cup of water in the two or so hours I was away, plus another half of one of those tall Arizona iced tea cans.) He said the contrast was great and they should be able to get real good images, comparing it to photocopies that are almost identical to the original, versus ones where the printer is running out of ink. So that’s cool.

And I must give a shout-out to the people in the various radiology departments of the different buildings I’ve visited over the last two weeks at Trident Health System. From the mammogram, to the ultrasound, to the MRI, the CT scan, and the bone scan…these people have been amazing. Extremely professional and friendly. When I arrived in the morning, a volunteer took me and another person from registration back to the radiology waiting room and got lost. No lie. So this nice lady in radiology came out of her office and escorted me and the other lady to the rooms we needed to be in. Super nice! And the techs were also great at doing the IVs, only one shot each time. So yeah, I have nothing but nice things to say about the gray scrub wearing staff at Trident. Kudos.

My doctors’ appointments are today, so I’ll probably post an update on all that tomorrow!

Flashback: The Lump, a.k.a. Jean-Paul, a.k.a. JP

During a (not-at-all-routine) self-examination, I found a lump. This was in July. It felt about the size of a pin ball, was hard, seemed round, definitely out of place in the otherwise soft tissue. I went to the internet, as I often do when I want to learn more, and searched for breast lumps. I found a list of possibilities: cancer, cysts, etc. I read that sometimes lumps came and went with your cycle, and I was approaching mine, so I decided to wait and see if it went away after my period.

No such luck, so I called my doctor.

I had to wait a little bit for an appointment, mostly because I didn’t want to take off work and I had a day off coming up. I worried about the stupid lump a little bit here and there. I knew it was possible it was bad news, but I was damn proud I’d found it.

So I went to the doctor (I see a nurse practitioner at the practice who is wonderful, Nurse J) and she did the exam and said, “Yep, that’s definitely something.” She referred me for a mammogram and ultrasound, which I schedule for the following Friday, and that was that.

Insert me feeling pretty bummed right about here. I guess I had naively thought that she’d feel it and have something more definitive to say. Totally unrealistic, I know. She’s not Superman, she doesn’t have x-ray vision – though I’d argue that Nurse J is some kind of superhero.

At this point, only two people knew about JP: my husband, Brad (who even left work to be with me at this appointment that I was in and out of before he even arrived at the practice) and my boss (I felt I needed to tell her just in case it was bad news and I needed to go off the grid), but that’s it, because why worry people over something that could be nothing? So Brad is still worried and I’m still all chill about it because I still don’t feel like I have enough of a reason to be anxious.

Meanwhile, I haven’t stopped feeling myself up since I found the lump to see if it has shrunk, changed shape, etc. Which of course I couldn’t tell. The only thing I managed to do was irritate JP and make him sore. Not like a steady pain or anything, just a tenderness when touched. So don’t touch it, right? Wrong? When you have a lump, you’re going to touch it. Over and over and over again…to make sure it’s real, see if it’s magically disappeared, moved, etc.

So next up on the agenda was the mammogram (I can’t even with this scan…it deserves its own post), ultrasound, and possibly a biopsy, which I’ll cover in another flashback post.

The Diagnosis

On Monday, August 28th, I was diagnosed with breast cancer.

Cancer.

It’s probably the dirtiest word in the English language—at least one of them—right up there with the F word. Such an ugly, stupid little word. A word that can mean so many different things to so many different people.

In all fairness, I got lucky with my cancer. It’s curable. It’s not terminal. It’s not a brain tumor. It’s not inoperable. I’m not going to lose a limb. This entire experience is just going to be a blip on the radar one day.

Doesn’t make it suck any less, though.

When I received the diagnosis, I immediately decided I needed to document this experience. Writing for me has always been relaxing, and I assume/hope this will be no different. It will be an outlet for me; a way to communicate everything I’m going through so I can share it with my family and friends, and maybe even look back on it one day when I need to remind myself that I’m a survivor. Maybe it’ll even inspire someone else, give them comfort in their own journey; maybe it won’t.

Funny, when I decided I wanted to write about it, I wished I’d started when I first found the lump. But really, who wants to assume the worst when they find a lump? I sure didn’t. I’ll backtrack at some point and go back to finding the lump and the procedures that led me to the diagnosis, but for now I’m going to move forward.

So the diagnosis…invasive ductal carcinoma. Yuck. Double yuck. When I received the initial diagnosis, we were still waiting for the rest of the biopsy results which would indicate whether the cancer was protein or hormone sensitive, or something like that. I was kind of in a fog during that part of the conversation, and my notes from the phone call looked like pure chicken scratch. I think I even threw them away while cleaning by accident (I swear, it’s like I’m nesting). So the rest of the biopsy results determine whether I will need to undergo chemo or have some kind of hormone therapy.

Chemo. Blech. Seriously, my biggest concern at that point (not even kidding) was that if I had to go through chemo, I might vomit…after the chemo. I’ve heard/read/seen on TV where people get sick from chemo. I hate throwing up. Absolutely despise it. I can probably count on one hand the times I’ve vomited in my life (aside from early childhood as I don’t remember much from back then because, yeah, it’s was more than 30 years ago).

Here’s another thing that floors me. I’m 35 years old. I think I was in denial that my lump, let’s call it Jean-Paul (French accent and all, just because – and JP for short), was anything because I’m only 35. I either naively thought that breast cancer happened to women older than me, and the occasional male, or I didn’t think about it much at all. Interesting how I accepted its possibility in men more than in women in their 30s. I was so wrong. My doctor had diagnosed 3 other women in their 30s the day I went in for my biopsy.

Cancer sucks.

By now you probably have an idea that my stream of consciousness, which I’m pouring all over this post, is sort of all over the place. It’s hard to focus on one particular thing when there is SO MUCH running through your brain. That’s how I feel – utterly overwhelmed. I’m overwhelmed, but I’m positive. Optimistic even.

My cancer is curable.

Not everyone is that lucky.

So back to the diagnosis. I got a call back from my doctor a few days later with the rest of the biopsy results (after playing phone tag because she called while I was in class, and like a good little student, my phone was tucked away in my backpack on silent). All my finger-crossing that it wasn’t the kind of cancer that required chemo was for naught. It is indeed a protein-based cancer that will need to be treated with chemo. Boo. I just hope the anti-nausea meds work, but I’m not holding my breath. If I lose my hair, I’m probably not going to like it, but I hate feeling nauseous more than I love my hair. How’s that for priorities?

I’ve got HER-2/NEU. My doctor asked me if I’d done any research on the internet. I said no, which is still sort of surprising to me. I’m the kind of person that wants information and facts. I want to know everything about everything so I can make well-informed decisions. Oddly enough, I didn’t research this. Why, you ask? Well, because I loathe Dr. Google. A cramp in a pinky toe can turn into an aneurysm in about 3 seconds flat with the right web search. So I didn’t want to do that. Granted, when I first found JP (the lump…stay with me here), I did a little searching to see what I might be dealing with. But that was it. I looked at the list of potentials, and made a plan. I didn’t agonize over what each and every possibility was and what it meant because it could have been anything and I didn’t want to drive myself insane and end up with an anxiety disorder on top of whatever the heck JP was. I’ll include more about that in a later “flashback” post, though.

So HER-2/NEU, chemo, and an appointment with my specialist and an oncologist on September 8th. I’m having some imaging done this week (MRI, bone scan, CAT scan) – to determine size and see if there is cancer anywhere else, which I’ll talk more about later.

That’s where I’m at right now.

This post may not have made any sense whatsoever, but, like I mentioned before, my stream of consciousness is sort of all over the place. Had I started these posts immediately, they’d probably be a little better organized.

**Shrugs** Oh well.