The importance of friendships

Some of you might not know this about me, but I'm a pretty big extrovert. Not just in the way that I'm loud, boisterous, etc., but in how I "fill my cup". When I'm overwhelmed or have expended a lot of energy, I need to have interactions with others. Quiet reflection and Mary are not friends--and certainly not now.

Sounds good in theory, but not so much in practice. Mostly because it's rarely quiet and it's pretty filthy. 

So the first recovery period was hard on me both physically and emotionally. The second and unexpected recovery was the hardest yet. Not in terms of pain, but more in terms of solitude. I have been reluctant to reach out to others for fear that people would get sick of my whining. I continue to beat the odds in all the wrong ways and I'm not even sure a soap opera would buy my story--it'd likely be labeled as too unbelievable. 

There's been some legit reasons for my self-imposed isolation: it's tough to hang out when you're doped up on pain meds and sick from chemo; it's difficult to go out in the community when you've got drains in; and honestly--we're in Minnesota. No one sees much of anyone during the frigidly cold months.

An extra tauntaun would be nice in case we need to unexpectedly camp...

But I got sick of my own pity party. I called friends and forced myself to get out into the world and visit with people. I left the cities for the first time since October (huge deal--we used to travel a lot!). 

I realized something last week. Neil and I aren't blessed with having a lot of family, super close. But we are blessed with an awesome bunch of friends who care and support us. I spoke with a friend last week in a similar no-fam-around situation. While some might see this as a curse, I'm choosing to see it differently. This gives us the luxury of building our own supportive, awesome network of collaboration. We've been pretty scared and isolative for much of the last 6 months--which is totally me. I wanted to try to give Neil and the boys as much time with me as possible, just in case I died. I realize now that was wrong. I needed to reach out and accept what you all were offering--your friendship, companionship, listening ears, a drink, a laugh--whatever. 

So, as we roll into the summer, I hope to see much more of all of you. I've always known you guys were important to me, but wish I would've realized exactly how important your friendships are to my healing process before I got so low. 

Thanks so much for your patience and understanding! I can't wait to get back into the groove of seeing you guys more often.

<3,
~M

Mastectomy 2.0

I'm sorry for vague booking this earlier. I've receive value lot of questions and haven't been able to answer them due to anesthesia.

I'll try my best right now. After my last surgery (the official mastectomy), I had an unusual amount of drainage. Most people keep their surgical drains in for 10 days--mine were in for 22. After having them removed, I continued to have significant difficulties with fluid buildup near my faux-boob. I needed to go into the doctor's office to have it removed via syringe. Thank god they severed nerve endings in that area!

Additionally, my blister wounds weren't healing right...taking far too long and just not looking good. So when I went in Wednesday afternoon, my plastic surgeon and the resident suggested removing the injured skin, cleaning out the fluid pocket and then "belts and suspenders" to tack my skin down to my chest wall and remove space for the fluid to accumulate. Altogether, a 20 minute procedure with the largest recovery from anesthesia. This is important because all these factors are reducing my ability to start radiation in a timely fashion because we can't start radiation until they all clear up. We said sure and surgery was quickly scheduled for today.

Imagine my surprise when I woke up hours later. Turns out things weren't so simple. Frankly, things with me are *never* simple. When the docs opened me up, they had an "oh shit!" Moment. Turns out the fluid buildup was larger than anticipated, my muscle had slipped over the expander, a "film" covered everything and the donor material used to support the implant within the expander was not attached to my body. This meant that they had to take out everything and start from scratch. New expander, lots of scrubbing and more surgical drains.

Here are some Platypus babies to lighten the mood.  

 The docs reported it's a good thing we went in for this minor-turned-major procedure though. The second I would've started radiation, the expander would've collapsed, causing me to have another surgery but this time leaving me with no expander or faux-boob (I happen to like having a pair of 'em, not just a single). I'd have to have something called a TRAM Flap. Obviously, not ideal.

So, here I sit. Mastectomy 2.0. Slightly less painful, but a little more grateful.

A Different Neverland

Had my appt with the Radiation Onc today. It wasn't a good one. Based on my path report and regardless of margins, best outcomes are to pursue radiation.

I am devastated. N didn't come with today because his company was purchased recently by another and I wanted to be conscious of his time off. I should've been more concerned with my own damn well-being.

Today isn't a good day. Today I feel like I live in a different "Neverland" than Peter and those upstarts, the Lost Boys. My Neverland isn't populated with fairies and food fights. It's filled with things like: It's never going to be over; there's never a finish line; It's never going to get better; The pain will never go away; you'll never be the person you once were...

I'm faced with a new reality, one I wasn't prepared to step into. I keep thinking that there's a finish line, but there isn't. There's never going to be a reality where I won't be affected by this cancer. Radiation for 6 weeks, expander for close to a year, surgery for reconstruction, surgery again as my body will (likely) reject the implant causing difficulties*; potential for different cancers down the road...I'm not making this up and catastrophizing. This is what I heard today. I never wanted cancer to define my life, but I'm not sure how it can't define it.

I don't want to hear that it will get better. I've heard that time and again...no one has been right yet. I feel like I'm half a person; I'm not able to live the life I want to live and I know I'll never be the same person I was. I desperately wanted to live in a post-cancer world, but today? Today it feels like that's a world that will never exist.

And for all you therapists (and non-therapists): I called someone today.


*From the Radiation Onc, I heard that 1 out of 2 women are somewhat dissatisfied with their reconstruction after radiation and 1 in 3 will need to have additional surgery due to rejection--which ALWAYS happens--it's the 1 in 3 that need surgery because of the complications of the rejection. I'm not just being overly negative here. 

On resiliency

Tomorrow I head in to meet yet another doc--this appt will be to determine whether or not I'll actually need radiation on top of everything else. Because the Onc and Surgical Onc differ on this point, they've sent me to someone else as a tie-breaker. Even though I believe (given the path report) that my odds of surviving 10 years is greater than 85% at this point (and the Surg Onc says that radiation will provide only another 5%), I'll most likely go with the radiation if it's recommended. I continue to be concerned with the quality of life issues raised by radiation, though. Mostly, this is an increase in pain due to the expander remaining in longer as well as cosmetic reasons--which face it, are an important quality of life issue to some people, me included.

I didn't sit down to write much about this, though. In terms of talking about how cancer has affected my family, I generally only talk about the little one. He's at the age where he's not supposed to be as verbal as he is (see the previous entry about my "genius" younger son, LOL), but he does continue to push limits and act out in response to these changes. Obviously, this is normal for his age and this trauma. 

But the biggest little, V--I honestly expected he'd fall apart. Don't get me wrong, he definitely pushes limits (and certainly did during my hospital stays), but...he's remarkably empathetic and such a good listener. He constantly helps with all the things at home, independently and in school? He's in the top of his class!

At the beginning of the year, he had to come up with a goal for himself (and Neil and I had to come up with a goal as well). This was in the early stages of my diagnosis and before treatment started. My (unstated) goal was to make it through his Kindergarten year--just to survive to see it. But both stated goals were the same: We all (independently) wanted to see Vaughn learn to read by the end of his kindergarten year. We live in a very poor district--60%+ students receive free/reduced lunch (this is the standard by which school districts are judged as impoverished). He is in a class that has 24 other students, most of which came into kindergarten only speaking limited English. And this week? This week he started reading books on his own. Despite all the challenges of the year, despite the high needs and high numbers in his class, my son learned to read! We laid in bed and Neil and I listened to him patiently sound out every word and read the sentences by himself--oh how we beamed and praised!

The next day, V turned to me as he was getting ready to go to school and said, "Ya know...last night, I was so proud I almost cried."

Me too, kiddo. Me too.