Uncertainty

So every year I have a stack of movies I watch in the weeks between Thanksgiving and Christmas.  Typical holiday-type flicks: It's a Wonderful Life, Home Alone, How the Grinch Stole Christmas, White Christmas, The Santa Clause, and The Holiday. Another that I always watch is The Family Stone, which I love because of the giant family and the complicated dynamics between each member.  In the movie Sybil, the mother to a handful of grown children, has recently found out that her breast cancer (which she's battled in the past with a bilateral mastectomy) has returned.

I've watched this movie every year since its debut almost a decade ago, and of course, this year it hits home. I cried at all the parts I cried at before my diagnosis, but this year as I watched, a red flag was raised. What if my cancer comes back too, and what if we don't catch it in time to have the prognosis I had this summer?  I know the chances of it returning are statistically in my favor, but there's still those single-digit percentages that the cancer will return. I've been doing a great job not thinking about that happening, but I'm certainly not immune to it.

So what do I do?  I can't obsess over it and go into every appointment with fear or over-analyze every ping of pain I feel. No one has time for that! All that I can do is be aware of major changes, see my doctors as they suggest, and live the healthiest life I can. That's all any of us can really do, right?  No one has immunity when it comes to cancer; it sees no difference in race, class, gender or birth order.  I just hope that the battle I've already gone through wins me points if there is ever a round two.

Wednesday

By this time next week, I'll be resting comfortably on my living room couch with my new boobs (and Jason!) to keep me company.  ONE WEEK!  I can finally answer "When's your surgery again?" with "Wednesday" and people won't ask for the actual date. I've been counting down for some time (sorry), and today got the following reminder on my phone:

My "event" is just a week away (as if I'd need the reminder, ha)!

Total side note: friends/family who are nurses, this is for you.  I had a second pre-op appointment on Monday to basically make sure I was alive before the doctor could sign off that I was good to go on surgery (my hemoglobin, kidney function and potassium levels are all normal). The doctor came in (not my regular), sat down and started going through my information: current medications, past surgeries etc.  Here's a rundown of the conversation:

Dr.: "What surgery are you having next week?"
Cassie: "Breast reconstruction."
Dr.: (pause) "Why are you having breast reconstruction?"
Cassie: "Because I had a bilateral mastectomy in June."
Dr.: "Why did you have the bilateral mastectomy?"
Cassie: "I was diagnosed with breast cancer."

Now, I'm not saying (at all) that it's the doctor's fault for asking these questions (although I wonder if she saw how old I was and thought maybe I was getting new boobs for fun?).  I'm curious though, why none of that medical history, pretty major stuff, wasn't on my chart?  Especially since I'd had the pre-op for the mastectomy at this same clinic?  They know I had once been taking pre-natal vitamins, but they skip adding cancer to the list?  C'mon!

Weekend Wrap-Up

Did I mention that I started work again last week?  I was (and will continue for a bit longer) working from home.  It felt great to have my brain back in use after my three weeks "off" but I found myself getting frustrated because of the workload.  It's not a heavy one to say the least - work has been great about easing me back into my duties - but I do feel overwhelmed at times, which I think, is the most frustrating part.  Before all of this, I'd be able to take on what I've got on my plate and then some without blinking an eye; now, I'm distracted and feel really slow.  I'm getting the work done, don't get me wrong, but not at the speed or quality I typically like to produce.  Crossing my fingers that this next week goes a little better!

My "home office" at the dining room table and a
big perk of working from home: catching kitty cuddle sessions :)

 

 

My second tissue expansion on Thursday was a much better experience than the first!  I still had the tight, sore feeling from the first round, but the pain I felt in my ribs was completely absent!  I sneezed once late Thursday night and felt a quick stab, but other than that, my meds did their job and it was tolerable.  Thinking about getting a little crazy this week and bumping it up from 25 to 30 cc's in each side.

We met with a reproductive endocrinologist Friday morning and since, I've been struggling to summarize our experience.  Although the man is a genius who in the past made national headlines for his work with surrogacy (in a good way), his social skills were a little off (i.e. talking to me, as in mentioning something about the age of my ovaries [28 like they're supposed to be, if you're wondering] but looking at Jason while saying it.  Odd. 

Anyway, the reason we met with him was to determine what our options are for starting a family.  Here they are, as clear-cut as I can make them:

1. We harvest, create and freeze embryos now, before I start taking the tamoxifen, and use them either when I'm off the medicine in 5.5 years (it's been suggested that we wait 3-6 months after taking it so the drug is out of my system) or implant the embryos in a surrogate at some point before then.  As you can imagine, this process is extremely expensive (like, needing to with the Powerball before doing it, expensive).
2. We look into adoption.  I wish I could write a paragraph about it, but I've honestly not started doing research on it yet so I can't!
3. We wait 5.5 years (until I'm 34.5) to try for our first child. 

I feel like an 18-year-old again, starting college and trying to foresee where I'll end up in 4-5 years. Most 18-year-olds shouldn't be able to make such major decisions about their future (I put myself in that category); they haven't "lived" enough to know what they want to do when they grow up, and this feels like a similar situation.  How are we supposed to know what's best for us in the next 5 years?  I hate hate hate that there's a time frame pushing us too; if we decide to freeze embryos, we'll need to start the process in the next couple weeks, and I feel like that kind of a decision (and finding a pot of gold) requires more time.

Needless to say, I've had some very emotional moments over the past couple days, and I think that's why I've been delaying a post.  I didn't know what to write.  The thought of waiting for so many years to have a baby is breaking my heart, especially since we were ready for that part of our lives right now.  I'm trying to have patience and generate positives about waiting but are you kidding me?  I'm the most impatient person on this Earth and waiting that long sounds like cruel and unusual punishment (for a crime that I've never committed).

Time to break out the good ole note pad and make a pros/cons list (after researching more about adoption, of course).

Reproductive Endocrinologist

More Tears

I know it's hard to imagine being so incredibly happy yesterday and then sad today, but it's true.  It happens.  Today Dr. Howe (my oncologist) called referring me to the U of M's Reproductive Medicine Center so I could set up a consultation with a fertility specialist before starting tamoxifen.  The woman I spoke with gave me a general rundown of services, all of which are extremely expensive, and most of which are not covered under my health insurance plan.

I know it's way too early to be giving up on having kids, especially since there is still so much that we don't know - we have many options.  It's just very cumbersome and scary and not at all the way I imagined making our little family of two into a family of three or four.

I'm still feeling VERY optimistic about everything else; it's crazy to think that it's been four weeks since my surgery on June 26 - absolutely nuts!  I'm feeling better and better every day and couldn't have asked for a better recovery period!

Reproductive Medicine Center

Reproductive Medicine Center

Reproductive Medicine Center

Tears

Of JOY!  Psych, I bet you thought after reading the title that something bad had happened.  Nope, not this time!  We just got home from my appointment with Dr. Howe and he gave us the very happy news that I won't need chemo or radiation!

He confirmed that I will have to be on tamoxifen for the next five years, meaning that the hormones in my body will be blocked by the meds, giving me menopause-like symptoms (and not very good for growing a baby). Dr. Howe is having a team member of his refer us to a couple fertility doctors, so we'll definitely be having a baby discussion before I start taking anything.

Hip hip HOORAY!

Third Time's a Charm?

I had the privilege of being drained for the third time today.  Gross right?  How is it possible that over three weeks of healing, I'm still producing enough liquid that it needs to be extracted from me?  Thankfully, it was MUCH less today than it has been the other two times, so I think 1) the room my expanders took up is leaving less room for the liquid and 2) the compression bandage is working.  I've certainly been drinking mine and Jason's share of water the past couple days so maybe that had something to do with it too? 

Tonight I spoke with a lovely woman from Boston who had, 5-6 years ago, been in a very similar situation as mine.  She was 28 at the time of her diagnosis, and although her surgery and (so far) treatments were different, she was able to offer me something no one else at this point has been able to offer: knowing exactly how I feel.  No, she and her then-boyfriend (now husband) weren't trying for a baby like we were at the time of diagnosis, but she understands the fears of recurrence and having cancer constantly on the brain.  It was SO nice talking with her; I'm sure by the end of our 40 minute conversation she was more than ready to hang up, but I'm looking to her as a resource of information so I can't get enough of it. 

I hope that I can be that voice someday, helping another young woman in our situation.

Funk

I had my first bit of bad news yesterday since my initial diagnosis, and it totally put me in a funk for the rest of the day/this morning. It wasn't even news, it was just talking about potential outcomes after surgery.  It's likely that I'll have to take a drug for the next five years that has the potential to put me into early menopause.  If that happens, I'll have to wait five years before carrying my own children.  I think I'm having such a hard time with it because I finally got to the point where I was ready to start having children, and now that I'm ready, I'll have to wait. 

This is all hypothetical of course; we don't know what will happen after surgery so I'm trying not to dwell on the idea.  Before I start any sort of chemical treatment, I'll be meeting with a fertility doctor to talk about potentially freezing eggs for later use.  In my ideal world, if I'm not able to carry a baby for the next five years, I'd get a surrogate to do it for me.  No idea what the cost or emotional repercussions of that are, but I just don't think I (or Jason) can wait that long.  We need something good, and soon.

One Step Back

Day five of being a cancer patient and I’ve finally hit a wall.  It’s not all sunshine and rainbows, even when getting good tidbits of news here and there.  It’s so funny how some people in my life never had opinions about my breasts and now all of a sudden they do, and aren’t holding back their thoughts.  Yes it may seem drastic to go with the double mastectomy to some people, but they’re not the ones sitting in the chair listening to test results or the statistics from the board certified specialists I’m seeing.  And did I mention, it’s not their breasts we’re going to cut off?  They’re mine, and I think that as a 28-year-old informed, capable adult I have all the right in the world to do whatever I want with them.  I’m going forward with the procedure and I feel 100% confident in that decision.

Will I have kids someday?  I hope to God that I do.  Does that mean mentioning it to my oncologist?  Obviously.  I don’t want to take medicines now that will mess up my uterus or eggs so I’m sterile at the end of this.  Don’t you think the doctors look at my chart, then look at the fact that I’m a happily married 28-year-old and wonder if I’ve thought of having children (it says that I’ve been taking prenatal vitamins in my list of current medicines for crying out loud!)?  They’re bound to start asking those questions, I literally just haven’t had a chance to meet the oncologist yet. The surgeon doesn’t care, neither does the plastic surgeon or the lady at prosthetics. 

Do I know what my insurance deductibles are?  No, I’ve never had anything more than a couple wisdom teeth pulled.  Does that worry me?  Not at all.  Why not?  Because there’s nothing I can do about it at this point.  If it’s $3000, okay.  We’ll have to pay $3000 for this fucked up experience.  If it’s more or less, we’ll pay that too.  I can’t change it and I have too many other things to worry about than to focus on money.

I love you friends and family and I’m so very thankful for your tips and extra questions to ask the doctors.  Please keep in mind though, that any comment that’s not completely positive or uplifting can and will likely be taken the wrong way in my current state of mind.

Still Can't Sleep

​Exhausted.  Up off and on since my last post.  It’s a lot harder to be confident and strong and positive when you’re alone and it’s quiet and dark.