Dem Bones

Today I got the first infusion to counterbalance the osteoporosis caused by Anastrozole. 

There was the option to get a one hour infusion or a quick shot. It shouldn't be surprising to anyone to learn that the costs associated with each option were VASTLY different. And that it took WEEKS of conversations with various people to get them to tell me which one would be cheaper for ME on the bottom line. No one seemed to get why knowing these details would drive my decision. Turns out the shot was going to cost me about $4,000 each time, while the infusion was going to be $1,700ish. 

Infusion it is!

The bonus? I got to spend the day in my favorite infusion center, chatting with my favorite nurses and "favorite pharmacy gal." It was like Old Home Week.

The downside? This infusion SUCKS. And it makes me feel like I'm having chemo all over again.

Now that I know this information, I will schedule this infusion better next time...so that I don't have to go back to work the next day. And so that I don't ruin my weekend.

48 hours from start to finish of feeling crappy and then it's gone. 

Good to know.

A New Doctor and a New Plan

Because you can never have enough doctors on your team...or doctor visits on your schedule...I now have a new one: a surgeon specializing in gynecology. Yippee.

You see, the estrogen in my body is what is trying to kill me as it's giving the cancer something to feed on. I've been on a daily dose of Tamoxifen (anti-estrogen therapy) since August, but the oncologist has felt all along that it would be benefial to my long-term prognosis if I would consider having my ovaries and other parts removed. Initially, we agreed to discuss this issue further after radiation.

Well, guess what? Radiation has come and (thankfully) gone, so let's discuss it. To be honest, there's really not that much discussion that took place.
Me: "So, I need to have them out? Can I have it done before my calendar year out-of-pocket maximum expires? Yes? SOLD!" Don't need them, don't want them.

Yep, that was the end of that appointment. Didn't research the pros and cons, didn't look anything up on the Internet, nothing. Because frankly, I'm just exhausted, and maybe don't care as much as I should. I'm an expert patient now, so bring on every medical procedure that you can think of. Really. Bring. It. On.

I left with an appointment to meet with this new surgeon and off I went.

And I think that the appointment with this doctor took a grand total of 15 minutes.
Me: "So, what's involved? How soon can we do it?"
Dr: "Blah, blah, blah, robots...blah, blah, blah hospital. I've got an opening in November."

DONE and DONE! Another surgery on the books for the beginning of November. The pre-op appointment is this Friday (no, I have no idea why the pre-op appointment is so FAR in advance of the surgery, but that's not my job), so I'll hopefully have more details about what this entails.

Right now the biggest decision that I have to consider is how long I'm going to be out of work this time? Hussle back and salvage sick time for the spring? Or burn all the time and come back in the New Year refreshed, rested, and maybe healthy? Hmmmm...

So What's Next?

I had my first follow-up appointment today. Because God forbid they even give you a week off from going to the doctor. Two whole days...whoohoo!

But it is good to go in for this one, because it's time to start planning my future and all the follow-up care that will become my life moving forward.

Here's what I know:
While it would be LOVELY if there were a magic blood test or scan that they could do to say that I'm "cured," there isn't. Which really sucks when you try and answer your kids' questions about "so, are you okay now?" Sorry, kiddos, I just don't know. I'd like to think so, but it really is pretty up in the air because of how angry my cancer has been this whole time. And the rest of my life is going to be one big unknown.

(On an aside, this brings up a whole host of weirdness regarding how to think about yourself and answer people's questions. How do I know if the treatments worked? Am I a "survivor" now? I don't think that I am. I mean, I survived this horrible year of treatment, but I don't think that I get the official "survivor" label until I've been cancer-free for 5 years. DO YOU KNOW HOW LONG THAT IS???!!! How do I know that I'm better? How do I know if the cancer comes back? Basically I've been told, if I'm still alive in 5 years, then the treatments worked. Awesome. For the rest of my life, every time I feel "bad," my first inclination is always going to be that the cancer is back. Again I say, awesome).

In two weeks, I'm scheduled for another mammogram. But this is only on the non-cancer (right) side. The left is too radiated right now for a mammogram (or any other scan) to be useful. Another mammogram (both sides) to follow in 6 months, with additional breast MRI then, and every 6 months (maybe 3) after.

Then I have a CT scan in 6 weeks to assess the "spot" on my kidney. Hmmm, thought it was my liver? "Oh no, we've decided that one is a cyst. Now we're concerned about the spot that's growing on your kidney." WTF???? When did we have this conversation???? Never mind, I'm actually past the point of caring. Schedule the CT scan and then we'll talk about it. Good times...

After the CT scan, I will have another appointment with the chemo doc (who, after you complete your treatment regimen, becomes your long-term care physician) to talk about the results. There will also be a blood test to check all my levels. And they are going to do a thyroid check because she thinks based on how I feel right now that it's possible that chemo has really messed up my system. No shit...you think??!

I also get to add another doctor to my team. There is strong discussion about having my ovaries removed, so I need to contact the surgeon who specializes in this to talk about it, and hopefully get it on the books soon. Better be before December 31st is all I can say. I am NOT paying any more yearly out-of-pocket maximums! Two years of that was enough for now, thank you very much!

I get to continue taking the daily Tamoxifen dose because I appear to be doing fine on it. Actually, it's because I never looked up what the side effects are so I don't know what to complain about. She said it is probably a good thing that I'm blaming some of my current ailments on the residual effects of radiation and/or chemo and don't know enough to blame them on Tamoxifen.

The radiation burn hurts (deep down, through layers of skin), and is continuing to get exponentially worse each day. This is expected, and will likely continue for about a month before turning the corner and starting to heal. How many times can I say, awesome?! It's beautiful...this is about 1/4 of it. Was really funny when the girl child asked, "mom, why is your skin so red?" I just stared at her until she figured it out.  

My "discharge" instructions from treatment include the following phrases:
(1) No alcohol consumption
(2) Don't gain weight
for the rest of your life.
(or something resembling these...I can't find the form to verify the exact wording). Why? Because my cancer responds to estrogen (estrogen positive) and alcohol consumption and weight gain encourage the production of estrogen (who knew?). I am also on Tamoxifen, and discussing removal of my ovaries to further limit estrogen in my system long-term. What is really funny about seeing these statements in print is my reactions to them.
(1) Shut up, I will be having a mojito to celebrate the end of this LONG and PAINFUL year. Maybe TWO!
(2) It's your fault I've gained weight!!! All the damn steroids, and treatments, and throwing me into chemo-induced menopause, and should I continue? UGH! 

Oh, and she laughed at me when I said that I was scheduled to go back to work on the 1st. Laughed. I believe that the words she used were "mentally unbalanced." (Honestly, if she could have committed me right then and there, I think she would have. She's already called twice since I've been home to access my mental well-being and offer phone numbers of therapists. I'm sure this had nothing to do with the complete breakdown I had in her office). There's a giant form you have to fill out every time you meet with the doctor listing every imaginable symptom you could be experiencing. I always joke about making a big circle around everything just to cover my bases. Today, I was actually reading some of the options: feelings of anxiety...anger...thoughts of violence toward others...hmmmm, I believe this process HAS made me a little angry. Can't imagine why???!!

On a positive note, it's been suggested that I must have a party to celebrate the end of the day-to-day madness of this cancer. I concur! However, seeing as how there is no Katy Perry concert upcoming that we could all attend together, I'm pretty sure that I don't have the time, energy, or $$$ to organize such a fete (though perhaps my insurance company would like to kick in some cash). And I'm surely not cleaning my own house to have you all over. I love you, but maybe not that much...not right now. Did you not read the paragraph above :violence toward others?? So, if there is someone out there SUPER inclined to be that person, feel free. I'll be there! With my Katy Perry wig. And I will be drinking a mojito!

Caregiver Wednesday: Guest Post #1

Another post in my Caregiver's "series" (which may or may not happen every week, but will pop up here occasionally). I asked several of my cancer peeps if they had a caregiver that was willing to respond to some questions. The first one I am going to post here is actually from a long-time friend that, with her mom, was a caregiver to her step-dad. 

Thank you so much for sharing your story Jen! I have merely copied and pasted her honest responses. (All of my asides are in parenthesis and italicized).

Who were you the caregiver for? My step-dad.

What was the type of cancer? Glioblastoma Multiforme.

What was the treatment?  Craniotomy/tumor resection, oral chemotherapy, radiation, and gamma knife surgery. (It's amazing to me how much caregivers end up learning about the cancer and the treatments...sometimes even more than the patient).

What did day-to-day look like for YOU?  Since I wasn't living with my step-dad at the time, my day started with a morning phone call from my mom (the primary caregiver) updating me with his condition, plan for the day, and overnight issues.  During the time that he was actively receiving care (chemo & radiation) I would drop my son (2 1/2 years old at the time) off at a friend's or my husband would work from home so I could pick up my parents and drive over to the U for treatment (University of Washington Medical Center...I'm guessing this involved driving over a horrible stretch of freeway in this area and a bridge, based on where I think that they lived at the time. If you are from Seattle, you know that this is NOT a fun drive to do every day under the best of circumstances).  My mom isn't comfortable driving on freeways so all appointments/treatments required a driver. A family friend and I organized a driving calendar. (Based on personal experience, this is a terrific idea and SUPER USEFUL for everyone).

What was your "role" as caregiver? (Yelling at doctors, driving to appointments, taking over at home, all of the above?)  Driving to appointments, being on point for emergencies (there were several), on Tuesdays/Thursdays, the days my son was at preschool, I would come by their house to visit and help, providing opportunities for my mom to take a break every once in awhile, by being there at the house or being by the phone and calling in every 30 minutes to make sure he was okay on his own.

What was the worst moment for you?  There were many, of course, but here are just a few.  The first was visiting him after his brain surgery and seeing the confusion and pain on his face and then once we realized that some irreparable harm had been done. He never recovered his speech, motor function, etc.  Feeling helpless during times when I couldn't be at the house to help. Each downward spiral of stages such as when we realized he needed a hospital bed in the downstairs office, hiring caregivers to help during the at-home hospice time, getting him a wheelchair, and finally when we saw his own sense of hope start to fade.  Of course, the times he spent at the hospice center was heart-wrenching, and finally his passing. (I cannot even imagine what this was like. And I feel that it's a good time to point out that while I loved my caregiver dearly, I really wasn't the person that was checking in to see how he was doing. People would ask me, "How's Keith?" and I would say, "you'll have to ask him." Seriously, people, check in with the caregivers. Theirs is a HARD road and few people remember to see how they're doing).

Was there a good moment for you?  I think making the choice to spend Tuesdays/Thursdays at their house was a gift. I had just moved into a new house and my son had started preschool so my "free" time was limited as was my capacity for truly being on the "caregiving front lines."  These are memories I treasure, just sitting and visiting with both my mom & step-dad. (So true, Jen. Thank you so much for sharing this. It's sad that cancer makes many of us realize that there are more important things to life than the hustle and bustle of every day that tends to take over. I am so grateful that you had this time...that you took this time).

Did you have to alter your life to be a caregiver? If so, how?  Yes, any extra time I had needed to be focused on my parents.  Not only did I want to help with logistical issues (driving, schedules, caring) but my mom doesn't have other family to help so she truly carried the weight of the world on her shoulders.  As best I could, I tried to help her emotionally by listening and being a sounding board for those times when she cracked from all the pressure.  I spent a lot of time on the phone with her and tried to be as present as possible while juggling my own obligations.

What is something you wanted to say to the patient but never did?  When my step-dad was clearly nearing the end of his life and was in a coma, we each took turns with him, talking and telling him how he changed our lives and that we loved him and that he could go.  I'll never know if he could hear what I said and I know that my love for him was something he felt...but I don't know why everyone always waits until the "end" to truly say all the important things.  I guess I wish he knew that all along...he was my true dad. (Amen!! Thanks for that reminder!!)

What is the one (two? three?) thing(s) that people say/said to you that you wished they wouldn't?  The whole "he's in a better place" thing, was tough...do they really know that? Or advice about "clinical trials" and going to Mexico to drink goat pee and such.  I know they were trying to be helpful but my mom and I spent HOURS researching and were choosing a treatment plan that we felt the best about.  This sounds weird too....but sometimes hearing about how "so & so had the same thing and they're cancer free and dancing the tango in Vegas" felt like a lot of pressure and didn't provide the intended hope. (This sounds suspiciously like my "what not to say to a cancer patient" post. Better amend that to include caregivers also).

What did people do for YOU that you appreciated?  Helping with my son was HUGE, it meant the world to me that I didn't have to worry about him while we navigated these waters.  Also, the family friend that organized the driving calendar since that was a monumental hurdle for us.  We also had a friend that made little radiation care bags that had juice boxes and snacks in them...that was great! (See people, sometimes you can help the cancer patient by helping his/her caregiver).

What is one thing that you wish people HAD done for YOU?  My parents would have benefited from a "dinner train"...people certainly brought by food, but something more organized would have been great. (Many websites do online sign-ups now for free: CareCalendar, SignUp Genius, etc. make this very easy to do. So offer to be the person that organizes this so the caregiver doesn't have to). For myself, just people checking in with me personally would have been nice...I did have a friend going through the exact same things at the same time (she was just a few months ahead of me) so we spent many hours commiserating!  Camaraderie rocks!

What is the best piece of advice you could give someone that has to be a caregiver? Be prepared to go through a whole range of emotions...sadness, anger, guilt...it's not an easy road. You absolutely MUST get out into the "real world" from time to time to realize that there are other things going on besides cancer and hospitals. (There are??)  Also, part of your role is an advocate and this can vary depending on the severity and condition of your loved one.  For us, my step-dad needed a lot of assistance so we really spent a lot of time researching and learning...you have to be a doctor yourself to truly make sure your loved one is getting what he/she needs.  And...remember to hold onto a little bit of yourself so you don't lose you completely.

Again, thank you for being so honest and willing to share Jen. I know that it was a difficult time, and appreciate your insight into how we can all help others through the same situation.

Next time, some thoughts on caregiving from another long-time friend...who happens to be the person that started me on my library career path.

Also, those of you reading this...if you were a caregiver and/or had a caregiver throughout the cancer journey and would like to offer some thoughts, contact me! And if I've already asked for your thoughts (cough, cough, husband, cough, cough), this is your reminder to get me your responses!

More Follow-Up Visits...and Better News Ahead!

Today was my follow-up visit with the surgeon (who is back from her vacation). On the agenda: remove stitches from my foot (stitches elsewhere are dissolvable), find out foot pathology results, talk about her take on pathology.

First, I realize that I never posted a pic of my awesome foot wound, so I'm doing that now. Isn't it purdy? NOT! Keith keeps offering to take the stitches out for me, but I'll pass on that thanks, especially as it might have involved AJ's glue-covered craft scissors.

Okay, I don't mean to be a wuss or anything, but getting those stitches out actually HURT. I believe I might have said "yeowch" at some point, and maybe more than once. But you don't care about this...move on to the results, right?

Here's the scoop:

Upon further review, the foot pathology initial results of "cancer cells" didn't actually show any organized cancer, so NO ONE is worried about this at all and everything appears normal now. (And if not, it's out anyway, so we really don't care). The only reason I cared about these results is the correlation between breast cancer and melanoma/skin cancer. I was concerned in the back of my mind that having let this thing on my foot go unchecked for YEARS might have contributed to the angry cancer I have now. Deep breath...doesn't look like this is the case. Now I have to keep it bandaged for the next 2-3 weeks, continue wearing only these comfy shoes (think the insurance company will reimburse us for more? And could it please stop DUMPING rain so I don't look like a moron walking around in flip flops?!), and no more pedicures for awhile. BUMMER. Someone please come paint my toes...

Yes, there was still cancer removed from my breast re-incision. If you remember WAY back to diagnosis, I have both kinds of cancer: invasive (ANGRY) and non-invasive. Obviously each is bad, and both together makes me awesome and an overachiever. If you could only have one, you'd want the non-invasive because it doesn't like to migrate other places. Turns out the cancer she removed this time, albeit a good size chunk, was the non-invasive variety. The surgeon was not actually surprised by this because this type of cancer doesn't tend to respond well to chemo. The margins were clear on 3 of the 4 sides around it, and the 4th was so close to clear and back up to the skin so she couldn't get any more out anyway without leaving a hole. 

(A funny side-note to interrupt here...the hospital sent the port she removed to the pathology place also. We had a good laugh over the part of the lab report that says: this is a port).

She says that I'm in a good place for radiation. Scars are healing nicely and should be on track for a 7/15 start date. This is terrific news and I'm going to consider it a belated-birthday present. So, on the 15th of July, I will meet with her one last time and get the all-clear for radiation. If she gives it, I will run through the hospital to start radiation right after. Fingers crossed!

So, What's New?

Holy Crap, there still is no plan moving forward. I am hoping that next Tuesday's appointment with the radiation oncologist (who likes to explain things in GREAT detail) will provide the answers I need so that I can have a "schedule" for what's next.

Besides the fact that I've had 4 scans and 4 doctor's appointments and 1 major meltdown in the last two weeks...Why the delay? Because I'm being a bad patient, at least according to the doctors (who I love and I know they have my best interests at heart). But the "best" strategy moving forward (according to them) involves radiation plus multiple surgeries over the course of the next 2 years, where I'll be out of commission for weeks and/or months at a time. 

And I'm no longer sure that it's the "best" strategy for me. Decisions...decisions...

FYI, being a cancer patient sucks :)

I will keep you all updated as soon as I have a plan that I feel right moving forward with. Thanks for the continued support and prayers.

I Revolt...And Win The Battle

Yesterday was the 12th week of chemo! Eight more weeks to go! A small milestone to celebrate. (There are many more surgeries and treatments after chemo, but this is a start). However, it marked another milestone: I won a battle with the doctor!

It all started with the typical weigh-in...this week I gained FOUR MORE POUNDS...IN A WEEK. That's SEVEN pounds in TWO weeks for those of you keeping track, and 12+ pounds in the nine weeks I've been keeping track. That's 10% of my body weight!

Let's just say, I went CRAZY. As in every nurse at the check-in desk started laughing at my ranting. Here's the thing, don't keep weighing me every week (which implies this is an important thing to track) and then not expect me to notice the number on the scale. Four pounds in a week? How do you do that? 

My very loud rant at the scale (which was very humor-oriented, not screaming-scary-crazy person ranting), continued with the nurse assigned to me. Lucky her! Keith, the nurse, and myself did have a GREAT laugh over this. Especially the one question where she has to ask, "Is anything swollen?" Yes, apparently my ass is. She was laughing so hard, she couldn't continue the questionnaire...and decided she probably shouldn't write that down. (Though I did double-dog-dare her to). I blame the steroids for this weight gain and said I was THROUGH with them. The wonderful nurse said I was welcome to bring it up with the doctor (and wished me luck, because she knew this was a mighty impossible battle to win).

When the doctor walked in about 30 minutes later, we laughed that the nurses hadn't warned her to stay away. I semi-calmly voiced my concerns about the steroids and this crazy weight gain. I mentioned that I was going to have to start billing my insurance for new clothes because nothing fit anymore. She listened to my concerns, agreed that the steroids could be the cause, and then she looked at my chart. "Wow! You weren't kidding," she said with wide eyes. No, I wasn't joking. Thank you for recognizing that gaining four pounds in a week is concerning!

Long story short, I win! She agreed to drop the steroids from the pre-med infusion regimen! HALLELUJAH! Now, I will have to wait until Friday to see if it makes any difference. Fingers crossed...

(Also, I am composing a post soon about weight gain, breast cancer, and chemo because it is a dirty little secret that no one talks about. I think that people facing this diagnosis should be prepared for all the things that they will face).

James Bond Not Even a Distraction

Now don't take this the wrong way dear husband, but Daniel Craig is a pretty good looking guy. In fact, he may be the best Bond ever, except of course for Sean Connery. But since Mr. Connery is a little out of my age group, I will have to settle for Mr. Craig.

Since Monday was a holiday, we decided to make it family movie day. Sort of. Three of us wanted to see the new James Bond, but the 4th was too young. So, we conned grandma into taking the 4th to some animated feature. And then the 3rd decided he couldn't possibly go to a movie with his parents and didn't want to go. I'm pretty sure either dad or grandma laid on the guilt trip, because he did end up going (but not sitting with us).

During the previews, the chemo doc called my cell to talk about "the meeting" she had with the surgeon and the radiation oncologist. Super, now all 3 of them are ganging up on me.

Here are the basics...which I learned about over the phone in the movie theater lobby:

All three agree that desperate times call for desperate measures. A mastectomy is everyone's first choice, but will NOT change the course of treatment. I will have to have chemo AND radiation regardless of what I choose.

There is an "unusual" (this is a word that I am tired of hearing) spot close to my heart (near the sternum? chest wall? breast bone? I wasn't really listening at this point) which is a lymph node that is "lighting up" on all the tests. Possibly has cancer in it, but because of it's location, no one can get to it to remove it. Super!
Five year survival rate percentage (or whatever they call this number) has dipped into the low 70s. That's kind of freaky, by the way. All along you think that your survival odds are like 99% because you're amazing and doing all the right things and it's just a process you have to go through to get to the other side. This is not something I really wanted to hear.

Of the three options for chemotherapy that were given to me initially, one was ruled out because of it's long-term risks to someone as "young and in good health" (another phrase I'm really tired of. I have cancer...how am I in good health???) as me. However, after this confab, it was determined that risks be damned. This is now the course that she wants me to go.

Before I can start anything, I have to have an echocardiogram, a PET scan, and a CT scan so that everyone knows what I was like "before." Yeah, more tests...which means more paperwork (see previous post). 

And then I went back into the movie theater (where us "young folk" were outnumbered 189 to 3 by the senior citizen crowd...teenage boy really loved us for this) and attempted to lose myself in what really was one of the BEST Bond movies ever. 

If only for a little while...

Craptastic! is My New World View

Keith said it, and I am beginning to agree with him: every time we go to a doctor or get a phone call from one, the diagnosis gets worse. Craptastic!

To bring you up-to-date:
Tuesday, the surgeon called from her vacation, to tell me the official results of the surgery. (Note to self or anyone out there who might care: if your doctor calls you from her vacation, the news will NOT be good...just sayin'). The 1 lymph node with cancer is not concerning anyone, because it's "only cells." She agrees that this will not drive the treatment decision. What is concerning is the fact that during this surgery, she just pulled 2cm of cancer out of the original lumpectomy site. Add this to the 1.1cm tumor she removed 3 weeks before, and the total of 3.1cm of cancer puts this angry beast in an entirely new and exciting category. When your cancer triples in size basically overnight, you are obviously graduated up the scary patient scale to the top. She tells me I must make an appointment with the medical oncologist THIS WEEK (medical oncology = chemotherapy).

(By the way, the rest of Tuesday was spent curled up in a ball in bed with a book and the TV. It was mini meltdown day and I'll own that).

Thursday: We had an appointment with the medical oncologist (which will further be referred to in this blog as the chemo doc). First, I have to start by saying that by the time we FINALLY saw her, she redeemed the entire practice from my initial reactions. But in all honesty, when I arrived, I immediately didn't like the place, and wanted to leave. At the time, the only redeeming quality was that their paperwork was so INSANE that it will provide fodder for a future post (stay tuned!). 

The doctor was terrific, very calming and reassuring, she got my sense of humor and she explained everything so well. It's not really her fault that I didn't like what she was saying. In a nutshell, here's the scoop:
(1) Yes, there will have to be another surgery. It'll be up to me whether it's a mastectomy or not, but whatever I choose won't make a difference in the rest of treatment because my cancer is so angry.
(2) Chemotherapy, the one thing that I was hoping to avoid, is a MUST at this point, and the sooner the better. As in NOW!
(3) There are several options for chemo, but she's recommending me to participate in a clinical trial (assuming the scientists like my witty sense of humor, I guess) which will include 6 rounds of chemo. Each round is 3 weeks long. When you do that fancy math, you get 18 weeks of chemo...yippee!
(4) Absolutely no way is she letting me go to Hawaii for Christmas (which, by the way, we've already booked). In fact, if she could convince me not to go to Vegas for Thanksgiving next weekend, she'd have me starting chemo next week.

So now you see why Craptastic! is my word for the day. I did hold it together in the office and asked all the right questions (like, should I plan on working or not? Middle school students are a hot-bed of disease after all), but I did cry the whole way home. And yes, one of the other questions I did ask was could waiting a few extra weeks until after the Christmas Hawaii trip really make a difference? I mean really, how could it possibly, right?! Well, when the expert looks at you and says, "I wouldn't," you'd be stupid not to take her advice. Damn...

Thursday evening involved wallowing in self pity with House re-runs on the TV and a giant jar of Nutella by my side. It did end on a positive note, when my teenage son spent the evening watching TV with me (go Sounders!). We had a bonding experience making fun of the girl child (yeah, we're evil, but she was a little out of control before going to bed), and talking about what they were learning about in biology...CANCER! Of course they are. Maybe he can get extra credit by bringing in my pathology reports...God knows he could use it...

What I Know Now...

So, now I have details! And a course of action. It feels good, but it also means that now I have to tell the kids, and my parents...ugh...

The first step in the treatment process is a surgery on 10/31 (so much for Halloween being my favorite holiday...and this means cancelling the Yusko's annual Halloween party. My daughter will be crushed!). This will be a pretty invasive surgery, and will hopefully remove all the cancer they can see and also determine whether it is in my lymph nodes and/or has started to spread elsewhere. This surgery will determine the next course of treatment: if it has spread, then there will be chemo (for how long, I still don't know), followed by 7 weeks of radiation. If it has not spread, then there will be 7 weeks of radiation, 5 days/week (this is the option that I'm rooting for!)

I anticipate that I will be out of school from Halloween through Thanksgiving. After the surgery, there is a 6 week period before any treatment can start, so whatever the next step is, won't happen until New Years. Best case scenario, I will be out for 2-3 weeks before Thanksgiving, at school in December, and out in January and February. 

After chemo/radiation/both, I will have to take Tamoxifin (sp?) for about 5 years, and have an MRI and a mammogram every 6 months (good times...you're jealous, I know). The thinking now is that if all goes well, a mastectomy will not be in the picture, though the surgeon did recommend it. I'm opting out at this point in the process.

Back to the Surgeon

October 18, 2012:

I was at work yesterday, and this morning. I had to give a webinar to librarians across the country. Again, it's good to be distracted.

The surgeon's visit was MUCH briefer than the oncologist visit. I love that they are both so different in their approaches. I'm beginning to think Keith is overwhelmed with information, but I can't really do anything about that right now. I'm a science major at heart and so this all makes sense to me.

We've decided on a lumpectomy (which this time means she's really opening me up and scraping out all the cancer she can find. Keith and I have started to refer to this as being poked with a sharp stick). This surgery will also include looking at the lymph nodes to see if the cancer has spread. This is a more involved surgery and will actually take place in the hospital, though I will still go home that night. The recovery time will be longer.

My choices could have been a mastectomy at this point, but I am opting to not do this at this time. She tells me that this still might be necessary down the road depending on what they find. She also tells me that I will probably have to have an MRI every 6 months for quite some time...this is a discussion we will have another day.

I schedule the first surgery she has open, on the 31st. There goes Halloween being my favorite holiday, and our annual Halloween party. My daughter is going to be crushed, because being in 5th grade, this was going to be the last one. Oh well, this is a tragedy we will have to deal with.

After the surgery, I will know what the next course of action will be...regardless, nothing can happen for 6 weeks after the surgery because it needs time to heal. So it looks like whatever the next step is won't happen until the New Year.

Meeting the Oncologist

October 16, 2012:

Yesterday I went to work because I can't just sit at home thinking. Still not eating much or sleeping, really hard to be motivated to feed the kids some nights. Hopefully today I will have answers.

Today I met the oncologist. The appointment was at 12:30pm, so Keith and I decide to go to Costco first and run some errands. Why not? And their frozen mocha slushie is really the only thing I want for lunch.

When we're done shopping, I get a phone call from the MRI center that says the results of the MRI are unreadable and I will have to do another one. Apparently I was moving (how is that possible with 3 Valiums in my system?), and the estrogen in my system was clouding the image (no one told me I should go off my birth control pills). WTH?! Needless to say, I am a little angry on the short car ride to the oncologist, which I spend plotting ways to yell at the people involved. This is going to set back my plan of action/results at least another week! SO VERY MAD!

Which is how I walked into the office, but the receptionist was amazing and I feel bad that she has to deal with crazies like me on a daily basis. Bless her.

We did meet with the oncologist...for TWO HOURS. I had no idea the appointment would be this long. At least at the end of it, I felt like I had details and answers that I had been craving, even if they weren't all good. It is from this visit that the name of the blog came about...

First, he went and looked at my MRI himself, and called in the head of breast imaging to look at it also. While they agreed it was inconclusive, they both felt they could see what they needed to see, and thought I might not have to have another one right now since I was going to have to have another surgery anyway. (More details to follow).

From this visit I learned that:
My tumor is 1.1 cm, with a histological grade of 8 out of 9. I refer to this number as the "cancer badness" scale, with 9 being the worst. 
Other words I heard were invasive, aggressive, and angry. Yep, I have angry cancer...of course I do.
I actually have both types of cancers: invasive ductal carcinoma, and ductal carcinoma in situ. Because why not have it all? :)

It is still unknown whether it has spread to the lymph nodes (damn MRI), and it is this info that will drive further treatment. What he does know is that I will have another surgery, and then either chemo and radiation, or just radiation. Either way, it appears the course of treatment will be much longer than I thought.

Now more waiting...surgeon's appointment is on Thursday.