Remarkable and Unremarkable

REMARKABLE:
Forgot to mention this yesterday...at about 5pm, I cleaned my glasses that I had been wearing all day and realized that they were not mine...

Twins!

Not only is my dear friend Emily that I spent the weekend with a great person, but apparently, we have essentially the same prescription.  I really couldn't tell a difference all day.  I'd say that's pretty remarkable.

REMARKABLE:
I got a package at my door today, which in itself is not remarkable given all you people being overly generous and showering me with love, support, packages, etc.  I didn't recognize the name or address in Minnesota, but thought perhaps it was an Etsy shop or something.  To my surprise, I found a card addressed to me with caring words from Susie, someone who volunteers with my good friend's parents (and my second set of parents) at Children's Hospital. Beneath Susie's kind words:

Stunning.

A beautiful hand crocheted afghan (in colors that are so "me"!) and a great fuzzy hat, that I'll affectionately call my Cookie Monster hat as it perfectly matches the jacket of the same nickname that I already have.  Susie is a survivor so knows first hand what an extra bit of warmth can do to get you through chemo.

Susie the Stranger, you are remarkable.

UNREMARKABLE:

Went to my oncologist this afternoon for the standard 2-week follow-up that I'll do throughout chemo.  Overall, a pretty unremarkable appointment.  "Are you sure you guys are giving me the good stuff? I feel fine!".  He seemed to think Big Bertha has softened a bit and her gang of nodes were smaller as well, all good stuff.  More importantly, the results from the CT scan to detect possible metastases last week were pushed to my patient account:

UNREMARKABLE!

I guess cancer does change things, as I never thought I'd be so happy to be unremarkable.

Friday's CT Scan

Posting a few days late...apologies.

Had a CT Scan Friday morning for a couple reasons:
1- Because the cancer is likely in the lymph nodes (the start of the lymph system, which essentially drain fluid and wastes), the chances of cancer cells being spread throughout the body (become metastatic) is possible.  A CT Scan will determine whether there are any concerning areas in the chest, abdomen or pelvis.

2- The breast MRI I got last week showed a suspicious spot on the sternum that given everything else, deserved additional examination.  

Through all of this, I'm learning why radiology  is a field deserving of it's own medical specialty.  It's really a whole heck of a lot of physics, in terms of sound, electromagnetism, and radiation.  And in general, it's interesting the levels of imaging that are done from a cost, safety to patients perspective.  The academic in me thinks it would probably make a pretty good dissertation topic of study (that's probably already been done) to examine some of the past and current practices by which all of these different technologies are used.  Yes, I realize I'm a dork.

After arriving at the hospital (which now I knew my way to radiology in...) and registering, the first step was to insert an i.v. for a blood draw.  Funny moment of this step...like at many hospitals, all employees wear badges displaying the unit with which they are affiliated.  The gentleman putting my i.v. had his badge turned a bit and I thought it said:

RADIOLOGY

AMIGO

to which I thought "huh, well, I guess he's my friend and maybe he speaks Spanish???".  So because I've decided to make all of the medical appointments as enjoyable as possible and engage in conversation with the various medical persons involved, I asked him about it.  Turns out, it said:

 RADIOLOGY

ANGIO

Yeah, that would make more sense.

Next step in the process was to drink the oral contrast agent over the period of about an hour or so....

Sure...I'll take the lemonade flavor...

Kinda awkward to sit in a waiting room with 4 other people doing the same thing (hmmm...wonder what's wrong with them!).

After that, it was actually a very quick process.  Got to leave my clothes on and everything, a few "hold your breaths" and a very interesting experience with the iv contrast agent that as more than one of the staff had told me "will make you feel like you're going to pee your pants but I PROMISE you that you won't" (Spoiler Alert: I didn't).

This CT Scanner could be yours for a low cost of 200K!

Results should come Monday, either from my surgeon or perhaps just at my appointment with my oncologist in the afternoon.  Also seen at the hospital that made me chuckle.  A vanity plate in the parking lot that said:

INTUB8

After the scan I enjoyed my non-teaching morning doing work at Panera, where I decided that I need to start a blog a la Texts From Last Night called "Conversations at the Coffee Shop", because, man, there were some doozies.  Also, I really hope the girl who was applying for the job at the March of Dimes gets it because based on her phone interview (of which I witnessed the entirety of), she really is a good candidate.

Lunch with a good friend followed, then our fall all-school faculty meeting.  Imagine like the Apple corporate meetings about new iPhones and such but people in suits, far less impressive presentations (properly branded PowerPoints...which by the way, I never appreciated "branding" until I met the aforementioned good friend who has educated me extensively in this area), and boring podiums.  So I guess nothing like it really, except an update and address for the faculty.  It went well, though I think many people I haven't seen in a bit were doing double-takes with the new short hairdo.

Friday night then consisted of spending time with my dear friend Emily, my former partner-in-crime at UD spearheading the creation of this (when at least I thought it'd be a massive failure) and her adorable little guy.  Also, I accidentally sent a pizza order to my old apartment.  Damn you online ordering!  Again, let's hope I was just distracted by the wonderful conversation and company and it wasn't a chemobrain effect.  Eventually got it right and it was delicious.

Physically felt great all day and should probably watch my whole eat whatever I want while I still have an appetite and lack of metal-mouth  otherwise soon none of my clothes will fit! :)

Let's Get it Started...

Marc hates the Black Eyed Peas.  I should be nice to him and not remind him of his favorite band with this title as he's got enough on his hand taking Alice HOME tonight!  Hooray for a growing baby that's doing well.

There's a lot to update...I'll just take you through the day.

8:30 am - Appointment with the "shrink".
This isn't something new, as therapy has been a part of my life for some time (if you haven't tried it, you could try it, it can be pretty cool).  I'm a bit of a smart ass so was anxious to see her since last time we had blown off the ultrasound and mammogram as "oh, it'll be nothing".  Well I'll show her!  Jokes.  Anyways, it was nice to chat and I'm glad I have this particular kind of support in place already.  As I said with her, while this cancer is something I'm dealing with, it isn't "me", so I'm glad that someone who already knows me can help me through this, rather than having to see someone new and rehash.

10:15 am - Appointment with the oncologist
After waving to campus as I drove by (convocation was today, classes start tomorrow, more on that later), headed down to the south end of town to meet the oncologist.  I really like him.  Straight-shooter, yet caring, let me get my clothes back on before he told me how the next 6 months will suck, and to top it off he's a Dayton Flyer.  That's got to be a good sign, right?

Thankfully he asked about enrollment and not this...

 

The most important part of the appointment though was him laying out the chemo plan.  He reiterated what the surgeon had said and provided some additional details as well.  Here's what it's looking like:

•  First 8 Weeks: 4 Cycles of Adriamycin (doxorubicin) and Cytoxan (cyclophosphamide), once every 2 weeks. 
• This is the "big stuff", the cancer killers.  Could see tumor regression in size after the first dose.
• It's also the stuff that can wreck your blood cells (as it just acts on rapidly dividing cells without discriminating cancer from healthy cells).  So after a treatment day, I'll go in for a dose of Neulasta to try to keep my immune system high.
• I'll still have to be careful about germs and such but don't have to go crazy with it.
• I will lose my hair (7-10 days after first dose), so it's good I checked out hats...
• Silver lining alert!  No shaving!
• Fertility shouldn't directly be affected, but really only time will tell.  Would want about 2 years post treatment before considering getting pregnant.  Considering that I'm single and don't anticipate that "I have cancer" is the way to a guy's heart, not thinking that will be a problem.
• Sidenote: the meeting with the oncologist felt a little like a first date..."he seemed nice"  "I liked that he looked at me when he talked" "He seemed well put together".  As I joked with Mom, maybe I shouldn't have been such a slut and let him feel me up on the first date....
• Next 12 Weeks: 12 Cycles of Taxol, once weekly
• This is the "easier" part, not as fatigue inducing, hair may grow back, etc.
• Surgery
• See last post, options TBD
• Radiation? (depends on surgery)
• Hormone therapy
• Can't do this with the chemo, so get to delay the whole menopause thing for now.

Before the chemo, I have to get a port put in to eliminate the need to constantly put IVs in.  Will look something like this:

Google search for the NSFW pics

 

My surgeon will do the procedure tomorrow afternoon.  Before chemo, I also need to have an echocardiogram done to check heart function.  This is pretty standard, and in really high doses, the doxorubicin (I use the generic name because that's what I'm familiar with...there's some good research out of U of Northern Colorado on exercise and doxy that I heard in grad school).  That's also going to happen tomorrow.  Doc's office is nice, they handle scheduling well, and sent me on my way, with appointments scheduled.  I'll see Dr. Romer in 2 weeks.

 

CHEMO STARTS FRIDAY!  I'm excited as I'm anxious to get treatment started...this schedule also bodes well for some future travels (I'm talking to you Minnesota...1st weekend in October...), and bonus! I won't have to get chemo on my birthday weekend.

 

11:00 am- Lunch!  Felt a little like a celebration which both Mom and I said was strange, but seemed fitting.  We like having plans!!

 

12:30 pm- Back to doc...oops, left before letting them draw blood for a pre-chemo check.  As I said on the way home today, it's probably a good thing, I'm used to being poked and prodded (thanks to the lab at CSU).  If I stressed out about ever needle stick, I'd be in real trouble.

 

1:30 pm- CHEMO CLASS! 

That is seriously what they call it.  At the place I'll receive treatment, myself and others got to attend C101.

 

And I thought the other welcome kit was impressive...

 

Sitting in this "class" felt a lot like I'm sure my students will feel like tomorrow...going through a syllabus (I can read! This is in writing! Why are you telling me this?!), people asking silly questions ("so, there are different kinds of chemotherapy?"), the instructor trying to make everyone feel welcome ("Not everyone will make friends with the person next to them"), giving helpful hints that really probably should just be demands ("If you want to use this to keep things organized, you can, but everyone needs to stay organized in their own way!").  Kind of funny.  A lot of the info was good, and we learned about some additional resources (direct help from Pink Ribbon Girls, free wigs from ACS, what helps with taste and mouth sores, etc.).  Also got to see the treatment space (wahoo for wifi!) where I'll be spending the 2.5-3 hours that treatment will take.

 

3:30- Cancer Survival Kit Shopping

Sort of felt like a college kid again, going to walmart and going shopping for "essentials" with mom.  This time though, the essentials looked a little different...

 

Where are the 3M hooks, school supplies, and shower caddy?

 

From left to right...

V-neck for easy access to port - and sure, pink, wahoo!

Sunscreen - chemo makes you sun sensitive.

Baking soda, bottle, salt, soft toothbrush - prone to mouth sores with chemo so have to rinse daily and want to avoid mouth bleeding as it's an easy way for infections to get in.

Ginger ale, crackers, ginger tea - while I will get anti-nausea medicine with the chemo in the iv and have prescription anti-nausea pills for after, this is the most common and annoying side effect and these can help.

Thermometer- daily temperature checks so that if infection arises, can nip in the bud

Lemon drops and Life Savers- chemo makes things taste bad, and sucking on these can help

Antibacterial wipes and sanitizers- Yeah, germs are bad. 

 

5:00- Breast MRI Appointment

MRI just gives another image of both breasts to make sure there aren't any cells lurking in the right breast and also identify the left and serve as a baseline.  Got to put sweet nipple stickers on, get an IV (for contrast for better imaging to be injected through) and then lay face down on the bed that gets put in the MRI tube.  Got to wear headphones and when asked what I wanted to listen to...

 

"Uh...Beyoncé...that's womanly, seems appropriate"

 

Didn't realize quite how loud the MRI would be, and actually drowned out the music, and sounded more like I was suffering through really bad house/techno music. 

 

If I was going to have a panic attack, I think it might have been at this point.  Lying, face down, just me, boobs hanging between plastic, contemplating what has happened in the last 3 weeks. Good thing I really like enclosed spaces, and didn't have to hit the panic button and made it through.

 

6:30 After picking up some food, finally made it home after a long but productive day.  Arrived to cards (Mom's friends...you people are way too nice...) and Amazon packages.

 

Light reading for bedtime, some serious, some fun.

 

Ordered these after reading this one:

On Amazon

 

Read this in literally a single night.  It's really good.  And I can relate already to a lot of what she writes about and I'm sure I will as this whole thing progresses.  It's good, I recommend. 

 

8:30 pm - Now.  Writing to update because a lot sure did happen.  Tomorrow's another full day, should make it back to campus in time to "teach" (aka 'syllabus day') at 4:30 but lovely coworkers will cover if I'm running late.  Thursday is a bit of a break, then the big day is Friday.

 

I'm happy to have a plan, as scary as the plan is starting to feel.  I'm sure some will say I'm rushing, but Big Bertha continues to grow, and I'm comfortable with these docs, facilities, and treatment plans, and I think that's really what's important.  The scientist in me freaked out a bit pre-MRI...."Should I do a clinical trial for the good of society?!?!"  "Maybe I'm rushing?!?"  "Did we ask all the questions we should have?!?"  But really, I'm in a good place getting ready for this, or at least getting as ready as I can be.

 

So here we go chemo, Imma be doin my thing.

 

 

 

 

Finishing up the week

Friday was an overall better day...Mom dropped me off at work in the morning since it was raining and prevented a pleasant bike ride in.  On the way, the surgeon called to let us know that the HER2 FISH test came back and was negative.  This means that the tumor has normal levels of HER2.  While this is good, in that HER2 positive tumors tend to grow more aggressively, it also means that the treatments that are available that can target the HER2 protein won't be options.

I have an appointment with the medical oncologist on Tuesday morning to discuss chemo treatments and the HER2 status is an important piece of information for that.  MRI with contrast is also scheduled for Tuesday, which will give more imaging of the breasts.  The insurance wouldn't approve a PET scan unless the surgeon really was insistent so instead I'll do a CT scan and bone scan instead.  These essentially accomplish the same thing...determining whether the cancer has spread to any other part of the body.

On the drive in (which is really only about 5 minutes...a lot can happen sitting in the parking lot!), Mom and I also discussed the issue of getting a second opinion.  Long story short, I made some calls, as did Barbara Crecelius, personal assistant, and got on the books for an appointment at Ohio State's Cancer Center.  In these discussions, both of us also found out that my insurance coverage is good, Anthem is helpful, and there are no limitations to chemotherapy drugs.  Additionally, the in-network providers get pre-approval before making orders, so while this can at times delay scheduling (ex: the PET scan), it also eliminates the need for me to make multiple phonecalls between insurance and doctors and for that I am thankful.

After work, essentially zoned out and watched Netflix with mom.  Would recommend Paranoia with the oh-so-attractive Liam Hemsworth, but not so much the "biopic" Diana.  While laying around, I had the thought that maybe this is all just a bad dream and at some point, I'll wake up.  Unfortunately, I realize that is not the case.

Overall, I am still overwhelmed by the outpouring of support.  Met with work ladies for coffee because they intentionally wanted to know what to do to help.  Your messages continue and mean so much.  In yesterday's mail, I received a touching note from my AP Statistics teacher from my senior year of high school.  Through the grapevine of former teachers and parents of friends, he had heard and gotten my address.  Also included was this photo:

Brought a smile to my face, as again, as much as life can change, it remains much the same.  Can't say based on looking at me that I'd know this was 11 years ago!