I need good vibes! Think "Cisplatin" or "12 weeks" if that's easier

Howdy everybody! Here are my thoughts for today.  Before I begin, thanks to everybody who has complimented me on this blog.  A few people have started sentences with, "So about your blog..." and thus far this has been followed by very nice feedback (to my great relief).  Even cooler was the woman from my workout class that said, "Somebody passed along your blog to me.  I love it!"  My blog is getting sent around?  Cool.  Nobody as of yet has said, "Have you considered finding a different outlet?  Perhaps one that doesn't involve writing?"  So thank you for that.  Of course, compliments only egg me on more.  Here are some random and non-random thoughts I've been having these past few days:

1.  I have had many people ask me in the last few weeks, "What can I do to help?"  I finally have an answer!  As you know, I'm in a clinical trial.  I had the last round of pre-trial tests today and I should find out by Thursday which group I'm in.  I need everybody to put all their brainpower/prayers/good vibes towards the following:  Please let Rachele be in the Cisplatin group.  Cisplatin is a big word that even I have a hard time remembering.  Another phrase you can use is: Please let Rachele be in the 12-week chemo group.  I should find out by Thursday which group I'm in. 

2.   As I prepare for chemo, scheduled to start May 13, my thoughts have been turning to hair accessories.  It occurred to me the other day that you don't see many turbans any more.  I plan on rocking the turban at some point.  In fact, I've already ordered one off of Etsy.   I can't imagine how this look ever went out of style.  Now I just need to find a good brooch.

 

3.  For those who have asked, I continue to research the medical marijuana issue.  It's statements like that that give me pause about sharing this blog with anybody from work.  In my defense, there was no pre-employment drug screen. 

4.  Any time I get sad about losing my hair, I think of all the money I'm going to save by not having to get hair cuts, highlights or that de-frizzing treatment I usually get in the summer. Plus, I can have straight hair for the first time in my life!

5.  Even if I don't get into the Cisplatin/Experimental/12-week group, I can still choose that chemo type for my post-surgery chemo.  But it's not as much fun if it's post-trial, you know?

To anybody that has left me a voicemail or sent me a message--thank you!  I have loved them.  I will eventually respond.  If you have taken the time to write me, I feel the least I can do is send you a response.  It just might take me a while.

The PowerPoint at the Plastic Surgeon's Office

So. I’ve referred a few times to the PowerPoint at the plastic surgeon’s office. At this point I’m starting to feel pressure to make this a funny story since I keep mentioning it. I might be funny, but a good storyteller I am not. But here goes.

Scene: The day was Thursday, April 3. The day after I’d gotten “the call” from my PCP about my diagnosis.  After going into work, I got a call from my PCP who told me to head down to Beth Israel Hospital (the “BI” I keep referring to for those readers who might not be Boston-based). I tearfully told my boss what was going on (after pulling him out of a meeting that included the CEO, CFO, COO, and CIO.  Nice.). I then spent a whirlwind and emotionally draining day at BI.

The visit that day started with me meeting my surgeon who told me that he didn’t have a lot of information for me, but did I have any questions? Um, well, if you don’t have much to tell me, then…no. That day I also met with a social worker, the surgeon’s nurse practitioner and a genetic counselor. All nice people, but except for my time with the genetic counselor (which was the most productive part of the day), it was pretty much me sitting in the chair with tears streaming down my face.

The initial plan (despite the lack of full information from the biopsy) was to do surgery with reconstruction and then we’d go from there with additional treatment. My day ended with a meet and greet with the plastic surgeon that would do the reconstruction. We headed over to his office where we were taken to a room to complete yet more medical history forms.  I was getting tired of completing these forms. The woman who showed us into this room also mentioned that there was a PowerPoint for me to view. Um, okay.

I’ve done many PowerPoints in my career so I’m always game for a good PowerPoint. Or even a lousy one that I can mock. And as somebody interested in health communication, this piqued my interest as to what a plastic surgeon would have to say in a PowerPoint to a new patient.

As an aside, I have a theory that plastic surgeon’s are narcissists at a minimum, if not sociopaths. If you are related and/or close friends with kind, loving plastic surgeons, then my sincerest apologies.  This is of course a generalization.  No offense meant to your kind, loving plastic surgeons whom I don't know.  My point is my expectations for a good bedside manner were already low.

Did I mention that at this point I was pretty raw from the day?  So I was sort of done.  Honestly, I could have met the nicest plastic surgeon at that point and may have had a similar reaction.  Anyway, below is an edited version of the presentation.  The one I saw was even longer with lots of pictures.  You should get the idea.  

 

So Aaron and I watch the PowerPoint with an increasing sense of stunned confusion.  I think I even said to Aaron while going through the PowerPoint, "is this really happening"?  When we were done we went back to the waiting room.  Then we're finally summoned to meet the plastic surgeon. No, wait.  We meet his nurse first and then eventually we met with him.  And he opened the conversation with, "So, any questions around the presentation?  Which way do you think you want to go?"  

In hindsight, perhaps this wasn't my funniest blog entry.  Here's my point (finally): This is not a recommended way to introduce reconstruction options to a newly diagnosed breast cancer patient.  Just saying.

Needless to say, I wasn't enamored with this guy and said as much to my doctors the following week.  I didn't get into the PowerPoint with my surgeon because I was worried he might say, "what's wrong with that?"  I just didn't want to go there with him.  My oncologist (who I really like and is one of the reasons why I decided to get treated at BI) raves about him, so I'm considering giving him a second chance.  The guy doesn't need to have a great bedside manner, he just needs to make sure my new boobs look as great as possible. 

If I donate my children to science, I might as well lead a good example.

Now that I've started this blog I feel pressure to continue it.  Anyway, a rather boring day at BI.  I met with the medical oncologist, signed the paperwork to participate in the clinical trial (more on that in a sec) and sat in my surgeon's office to have my incision looked at because the oncologist thought it looked swollen, only to find that it really wasn't swollen at all.  Well then.  Oh, and I visited the wig store at BI today.  Still processing that whole part of this.  The upside is visiting the surgeon's office today may have saved me from having to go in on Monday.  Sweet.  Of course, just in case I start to miss BI, I am going back next Tuesday to finish the clinical trial prep work (I hope) and meet my radiation oncologist.

One common question I've been asked is, "what's your treatment plan"?  I am participating in a clinical trial.  Before I answer that, let me back up a little.  I have tested positive for the BRCA gene.  This wasn't a surprise seeing as how my mom has the gene (but was one of the lucky ones to never develop breast cancer) and my mom's dad had it. This particular trial tests whether women with the BRCA gene may respond better to a different type of chemo than the standard "AC" chemo.  I don't have my (growing) manila folder with me right now, otherwise I'd be more specific about the type of chemo being used.

Anyhoo, depending on whether I'm in the control group or the test group, I'll either get 4 rounds of chemo over 8 weeks (control group/AC chemo) or 4 rounds over 12 weeks (test group).  Then surgery, then more chemo, then radiation. The rest of my year is pretty well planned.

Some might say, "a clinical trial, isn't that kind of risky?"  The way I see it, I really have little to lose.  If I'm in the control group, I'm getting the standard treatment of care.  If I'm in the test group, I get to be a guinea pig.  And even cooler, I get to be part of a research study.  I have already confirmed that I can have a copy of the final paper as a study participant.  My oncologist says it probably won't be published for several years, but that's okay.  One day I can show my girls the study that Mommy participated in.  After all, I donated Addie to science a few months ago:

Don't be fooled by my crocodile tears! 

So that's the education part of the day.  I would like to say a huge thank you to everybody who has sent me emails and messages as news has gotten out.  It has been so amazing to hear from so many people, many of whom I haven't been in contact with for years!  That's been awesome.  It's unfortunate that sometimes it takes bad news to bring people together, but I have been so blown away by the support.  So those are the happy tears that I cry, because people have been saying such nice things to me.  One of my favorites was the following,

"People may say you are fun loving and funny and that is definitely true but I also admire how brilliant and intelligent you are. I remember sitting in conference rooms with you and just thinking, “wow I really wish I was as smart as her.” I’d even sort of tune out what you were saying and think, “are people just born that smart or can you work towards it?”"

I think I liked this one in particular because I have basically felt like a moron since I had children.  I think tomorrow I will share the story of the Plastic Surgeon's Powerpoint. 

The hits just keep on coming

As I mentioned in passing, I had my lymph node biopsy surgery on Friday, April 19.  The day before I headed down to BI to become radioactive.  I was a little disappointed that my pee didn't turn blue.  Somebody else I knew found the radioactive shots to be quite painful and she was peeing blue for days.  But no blue pee on my end.

Anyway, we didn't need to get to BI until 9:30 Friday morning.  However, I was a bundle of nerves and we got the girls to daycare early and were down at BI by 8:15.  I wasn't allowed to eat and was starving, so that didn't help my anxiety level.  Shortly after we got there, BI went into lockdown mode from the manhunt that was going on for the 2nd Marathon Bombing suspect.  I finally got into the surgery prep area.  I don't know how many times I was asked the following:

1. Why are you here today?
2. Are you allergic to any meds?
3. What is your date of birth?
4. Has somebody written on the side that we're doing the surgery?

I'm sure they were more questions, those are the ones that I remember.  It was overwhelming to meet so many people--anesthesiologists, residents, nurses, the list went on and on.  Needless to say, this was a very different experience from the other two times when I was in the hospital to have my little girls. 

Finally one of the anesthesiologists gave me something for my anxiety.  I don't know what it was but I sure wish they'd given it to me when I had first gotten there.  That made everything better.  Shortly after they wheeled me into the operating room.  The anesthesiologist said, "here we go....", I was breathing into a mask and the next thing I knew I was in recovery.  Bizarre.

Move to today (Tuesday, April 23).  I knew today was going to be the day that they expected me to get the results of the biopsy.  I don't think there's really any way to prepare yourself for that.  I was a wreck most of the day and finally my oncologist called me to give me the news: the cancer had spread to 3 of the 10 lymph nodes they'd taken out.  There wasn't a lot of cancer, but it meant I was going to have to get radiation in addition to the 2 rounds of chemo and the surgery.  Son of a bitch.  Not what I was hoping to hear.  And of course I was at work.  Because that's what I do--go to work.  And workout (not at work, that's usually pre-work). My student loan and daycare bills aren't going to pay themselves, after all.

I hate crying at work.  I'd already had a meeting earlier that day with my boss and other people that I worked closely with to talk about my chemo schedule.  As hard as I tried not to cry, I still cried.  Have I mentioned that I hate crying at work? 

Some co-workers saw me getting the news about the lymph nodes and were there with hugs and reassurances.  They were worried about me driving home, but I drove home.  Just another day on the rollercoaster. 

People have said I have a great attitude and I sound very upbeat, but I think part of that is I want to appear upbeat to people.  I don't feel upbeat all the time.  I'm very scared.  I'm dreading chemo, surgery, and radiation.  And I know I'll get through it, but right now it feels like this very tall, cold mountain that I have to climb.  I appreciate the cheerleaders but I definitely feel like I'm laughing less these days, and that in and of itself makes me sad.

Did I mention that some of these entries were going to be kind of a bummer?  What can I say, at the very least I haven't lost the ability to speak my mind.  In hindsight, this was a bit of a "stream of consciousness" entry.  I think there are going to be a lot of those.

Tomorrow: Prepping for the clinical trial!

April 3, 2013

That's the date I got the news.  The biopsy came back as positive for breast cancer. Since then things have been a bit of a blur.  There have been lots of doctors' visits, second opinions, blah blah blah.  I'll share those stories along the way.  Some are strange (the PowerPoint I viewed at the plastic surgeon's office is a blog post all on its own), some are surreal (the day I had my lymph node biopsy was the day that Boston was on lockdown as they searched for the 2nd Boston Marathon bomber), and others are funny (some of the bizarre reactions I've gotten when I've told people the news).

This blog is intended to be a journal of sorts for me that I can share with everybody else.  There are many friends that don't know yet about my diagnosis--I apologize if I didn't get a chance to tell you personally.  I have also realized that there are a fair amount of people out there whom I haven't spoken to since they originally heard the news--feel free to get back in touch if you haven't heard from me.  It might take me a while but I'll respond. It's also been nice that this has brought me close to co-workers that I've only known 6 months.  I suppose having crying breakdowns at work will do that.

The last three weeks have been a roller coaster to say the least.  Bottom line, my oncologist and the rest of my medical team are very, very optimistic that I will beat this.  That being said, I have a long road ahead of me.  The story changes a bit as the doctors get more information and as I choose which treatment path to follow, but the path is starting to take shape.

I have good days, okay days and bad days.  I think the anticipation is the most stressful.  This really is a "one day at a time" journey.  The support I've received has been amazing.  I know part of this journey for me is going to involve learning how to ask for help and to let things go.  Work has been very reassuring that they're going to be there for me and not to worry about work--I need to focus on me right now.  I'll need to learn to let work go.  I hope over time I will learn to relax a little, but that's going to take some time too. 

Anyway, this is the first entry of my cancer journey.  Enjoy!