Helping Hands site update

Just a note--a few friends have told me they signed up for my Helping Hands site but never received notification that they were "approved".  Please know that everybody was approved but these approval emails seem to get caught in Junk or Spam folders.  If you registered on the site and would like to sign up for something, go back to the site and login under the username and password you created.  As far as I know, you should get in. And no worries if you have no interest in this.

A whole bunch of new meal opportunities have just been posted.  Huzzah!

Cancer is not a marathon, it's an Ironman

I can't believe surgery was a week ago. This was the biggest psychological milestone thus far, and in many ways it felt like the last big hurdle to overcome.  With that said, I'm finding that the relief of having the surgery over with is now overshadowed by the realization that there's still so much more to go in this terrible journey.

Before I get ahead of myself, the surgery itself was fine.  It is what it is.  Basically, my body is essentially a before and after of puberty.  Half of my chest is as flat as a 9 year-old, the other half isn't.  If you're not into medical stuff, you can go ahead to the next paragraph, but if you're interested in gory medical details, keep reading. I have a drain coming out of the side of me and at the end is a "grenade" that collects fluid.  I get to pour it out and measure it and note the color twice a day--once in the morning and once at night.  And I push fluid through the tubing a few times a day so it doesn't get backed up.  It's a good thing I don't get grossed out by this stuff.  I have a special camisole that has a pouch for my grenade.  I get nervous when I have to take it out of the pouch to empty it--I don't want to know what it would feel like to drop the grenade and have it rip out of me.  Ouch.

Here's one thing that staying in a hospital was a good reminder of: take care of yourself. As many of you know, I hate hospitals.  They're full of disease and sick people (do a search on MRSA and you'll see what I'm talking about).  Besides the fact that I have this pesky cancer, I'm a pretty healthy person.  My roommate in the hospital was a woman who couldn't have been more than 60 years old.  (As an aside, she didn't have cancer. I wasn't sure if the hospital tried to match people with similar conditions. Apparently the answer is no.)  My roomie was obese, had sleep apnea and she was in the hospital because she had an infection in one of the bones in her foot (I don't know how this is possible).  She was probably going to rehab after her discharge rather than going home.  She was a mess and she wasn't very old.  Lesson learned:  Take care of yourself!  Life is too precious and short to be in the hospital and/or managing a preventable chronic condition at such a young age (I realize there are chronic conditions out there that can vastly affect your life that just happen.  I'm not talking to you folks, you do what you need to do).  But to everybody else--move your butts!  Don't eat too much crap!  Don't smoke!  Okay, getting off my soapbox now...

As usual, I've digressed.  As I said in the beginning, while I'm relieved surgery is over, it's overwhelming and discouraging how much further I have to go.  Since I like running and sports metaphors in general, comparing cancer treatment to a marathon doesn't do it justice, unless it's one of those 100 mile ultra marathons in say, Death Valley.  I think it's more relatable to a triathlon--and not the sprint distance, but the Ultra distance (like Ironman).  And then when you're done with that, you need to do an Eco-Challenge. 

This surgery has loomed over me for so long, I didn't really think past it.  Honestly, I couldn't.  I had to focus on just one milestone at a time.  But now that I'm past what felt like such a huge hurdle and I look toward finishing treatment, it's very discouraging how far I still have to go.  In the meantime, my sights are set on my new hobby: Subversive Cross Stitch.  Some of you know how I took up knitting when I was pregnant with Addie with the plan to knit a hat that was similar to an adorable hat that my sister-in-law had knitted for Belle when she was born.  Well....Addie's almost 18 months old and the hat's not finished.  I haven't actually ordered a kit yet, but I do like to look at them. :) 

A pre-surgery update

As you know from reading my last post, last week wasn't great.  But it got better.  Last Thursday I had a post-chemo check-in with my oncologist.  While irrelevant, the tumor had shrunk quite a bit.  Anyway, I broke down in her office about the upcoming surgery and how I was struggling with the double mastectomy.  Then she gave me the best news--I didn't have to get the double mastectomy.  It was still recommended to remove the left boob, but I could wait for the right one when I have the reconstruction next year.  I was thrilled and instantly the surgery didn't seem as daunting anymore. 

Quick aside: Many people ask why I have to wait for the reconstruction.  You might remember back when I had my lymph node biopsy, the results showed that the cancer had spread to my lymph nodes.  Only 3 out of the 10 nodes had cancer, but since there was cancer in the nodes, I won the chance for radiation.  The radiation oncologist and the plastic surgeon both prefer that patients wait for the reconstruction. The radiologist wants a clear path to what he's radiating, and the plastic surgeon doesn't want his work muddied by radiation.

Knowing I got to keep my right boob for several more months was huge.  I felt so much lighter after I got that news.  I also got angry that it was my woman oncologist that brought up this option to me, not my male surgeons.  From the moment I met with the surgeons, they made it seem like it was all or nothing.  I was basically a ticking time bomb, and it wasn't a matter of if I'd get cancer again, it was a matter of when. At no point did they say I could have the left breast removed and get the right one removed when I went back for reconstruction.

To add insult to injury, the plastic surgeon's nurse called me shortly after my oncologist sent a note out to my team to make sure I was aware there might by symmetry issues if I waited until the reconstruction to have the right breast removed.  You know what?  That's a chance I'm willing to take.  What is it with this male doctors?

All that being said, I was still pretty anxious going up to the surgery (which was yesterday).  I'll write more later, but I did want to send a quick update of the change of plans.

Not one of my best weeks

Warning: Apparently I am prone to random crying outbursts this week as the reality of surgery looms. 

Let me step back a week or so.  After finally getting through the recovery for my final chemo treatment, I'd been feeling pretty good.  But since this past weekend, my impending surgery on July 23 has me quite anxious and really down about this whole cancer thing.  Here are some random awkward moments I've had:

1. My niece's birthday party on Sunday.  We went to my niece's birthday party and all of the parents were really nice but I felt so self-conscious there.  I'd only met one other couple there, but I felt very uncomfortable.  I didn't know what people knew, if anything, but hello, I was wearing a scarf.  It doesn't take an Einstein to realize that there's something going on with me.  And whatever it is, it's probably not good.  I actually started crying at the party because I was so miserable.  Not a sobbing cry, just a tears running down my face sort of cry.  I wanted to run away from the party, but a bunch of moms were hanging out by the backyard gate and I didn't want to have to walk by them and have them see me crying, so I just sat in my chair trying to pull myself together.  And then I just cried most of the way home.
2. Daycare parking lot on Monday.  As if Sunday was bad, Monday was worse.  I didn't sleep very well, which didn't help my mood.  I was able to hold it together for most of the day at work but basically fell apart as soon as I got to my car.  I ran into a mom that I don't know very well at daycare pick-up that evening.  Even though I don't know her very well, she's been so nice and supportive through this whole thing.  (Some of the parents at day care are quite unfriendly.  That's a blog post for another day.)  Anyway, I ran into this Mom and she asked how I was doing and I burst into tears.  Awwwwkkkwwwarrrrddd.
3. Oddly enough, I was fine on Tuesday.  I think getting some sleep helped.

Since then, it's been a bit of an emotional roller coaster.  I hate my hair loss, I hate my scarves, I hate my wig.  I hate it I hate it I hate it.  I've hated it this whole time but now I really, really hate it.  I wish I could be more anonymous.  I could be, I suppose--it's my decision to wear scarves over my wig most of the time, but that's mainly because I just haven't really gotten used to the wig.  And because I have peach fuzz growing back, the wig's starting to get more uncomfortable.  Yet I refuse to shave again because I just want my hair back.  One of the friends I've made in this whole ordeal told me that she hasn't told that many people about her cancer--she wears her wig all of the time and just told people she got a new haircut.  In many ways I'm jealous of her--there are many days I wish I didn't have to be constantly reminded of my cancer every time I look in the mirror.  The irony in all of this is most people tell me I look really, really good--not like somebody who has cancer at all.  Which I think is meant as a nice thing, even if it sounds like a backhanded compliment.  And people love both the wig and the scarves.  And the crazy thing is, I think most of the people have been sincere, which is crazy to me because you have no idea how ugly and freak like I feel these days.

To clarify, I'm getting a double mastectomy.  Technically I don't need to have both breasts removed, but given my genetic status and my desire/determination to never go through cancer treatment again if I can help it, I've decided to have both removed.  And many women get reconstruction at the same time, but since we already know that the cancer spread into my lymph nodes, I need radiation.  The radiation oncologists prefer a "clean canvas" for their work and the plastic surgeons don't like their work muddied by radiation.  So reconstruction needs to wait until sometime next spring/summer.

My primary solace is I've been told the surgery's not that bad.  A few women have told me that the anxiety is worse than the actual event, as the chemo and hair loss was in many ways.  And I've seen some pictures of women with mastectomies and the women actually don't look that bad.  The chemo's been one thing, but this surgery is a brutal reminder that this whole thing is very, very real.  I'm 37 (soon to be 38) and this has by far been the shittiest year of my life.   

File this under: Tell me something I don't know

I'm overdue for a "I'm so glad I'm done with the first round of chemo yet now I have to deal with my impending surgery" post.  What can I say?  I've been too busy feeling better to write a post.  I'll write something soon.  In the meantime, I saw this article in the NY Times and thought, "Really?  This is actually news?"  Because I can tell you now, I'm not even close to being done with my treatment to know that I doubt I'll ever be at ease that the cancer won't return.  This is one of those research projects that frustrates me because it's money that could have been spent on something else.  Maybe as a result of this research something good will come out of it, but I'm not holding my breath.