Post treatment blogging

I thought I would take the opportunity to blog when I'm not in a chemo week funk.  I didn't really publicize my last post but I did want to follow-up on it a bit because in hindsight it felt a tad self-centered and narcissistic.  I know that there are some people out there that haven't been in touch because they're dealing with their own issues.  I get that and my post wasn't directed at those people.  I got a fantastic response from this post.  I know I still owe a few people responses--I haven't forgotten about you, I just can't get my act together.  I also realize that many people don't know what to say or they assume certain things, so they don't say anything.  In case it wasn't clear, that was the point of my post--don't assume and even if you don't know what to say, reach out anyway (assuming you want to).  I'm not sure I articulated myself well in this paragraph, I mainly wanted to clarify that I do realize at times it's not all about me.

A few people have said I should write a book when this is over.  I'm incredibly flattered that you think I is a good righter (in case you don't know, that was a joke).  Others have asked me if I'm going to keep blogging when treatment is over.  I think if I were to keep blogging, I'd have to change topics.  The question, of course, is, what topic?  I could do a parenting blog, but there are a lot of parenting blogs out there.  I could talk about how concerned I am that in 2013 I still run into people who think it's weird if a girl wears a superhero shirt, or a shirt with dinosaurs or robots on it.  I suppose I could do a work-related blog, but I spend enough time at work.  One thing I have lots of opinions on are celebrity conspiracies, odd comments the media says about celebrities, and the general narcissism of celebrities:

• Celebrity conspiracies: It's been a while since I've spent a lot of time thinking about this, but two are my favorites are 1) that Nicole Kidman faked the pregnancy of her first daughter and 2) that I think Britney Spears youngest boy has Fetal Alcohol Syndrome.  I suppose the latter isn't really a conspiracy per se.  I'm sure if I wrote a blog consistently, I could come up with more.
• Media's portrayal of celebrities:  Does anybody else remember when Princess Kate had her baby and they were all leaving the hospital and the media praised her for not being afraid to show her body so early post-partum?  Do these people realize that you don't leave the hospital with a flat stomach after having a baby, no matter how much or little weight you gained during your pregnancy?  I saw the same said about Alec Baldwin's wife.  Really?  
• General celebrity narcissism. Why do celebrities take so many pictures of themselves half-dressed?  Do they really think we care?  Are they that self-centered?  I also saw a headline of how Beyonce rode her bike to one of her concerts in Brooklyn and posted pictures of it along the way.  So...she brought a photographer with her on her bike ride?  That's just odd. 

You might think I am ashamed at how much time I spend thinking about this. Oddly enough, I'm not.  Anyway, those are just some thoughts.  I'm sure next week will go back to our regular programming.  Final chemo funk post?

Something that drives me crazy

Three treatments down, one more to go.  Seventy-five percent through the Taxol, 87.5% through all chemo treatments.  On October 1, I'll have my last chemo treatment(!).  Some people have said, "we need to celebrate!"  And we do!  But it's not over...yet.  I still have radiation.   I know, I know, it's not as sexy as chemo.  But after radiation, it will be over.  Sort of.  I still have some more preventive surgeries ahead of me plus 10+ years of estrogen blockers.  So will it every really be over?

As I've alluded to in my past few posts, the biggest side effect of the Taxol is the depression and moodiness.  Ahh...I can feel it settling in now.  Each Taxol treatment's hit me a little differently.  As I've mentioned multiple times before, I have been overwhelmed by the amount of support I've gotten these past few months.  There have also been those who have been AWOL.  I try really hard to focus on the positive and all of the people that have been so great, but I continue to brood and feel angry about the people that said they'd be there for me but haven't.

As I start to (sort of) feel like the end of this is around the corner, I think about how my relationships with people are going to change once everything is "back to normal".   Should I confront the people that I'm angry at?  Would it accomplish anything?  What do I do about people that are in contact with Aaron but not with me?  How do I have a relationship with these people when they weren't around at my lowest points?  Especially when they still have a relationship with Aaron?  And why do people reach out to Aaron (or my parents), but not to me?  I might be a lot less angry with these people if they reached out to me and asked me how I was doing.  Because it drives me crazy when Aaron says, "I need to give Person C a call."  You do?  Why?  "Oh because she emailed us last week."  Um, I didn't get that email.  Or my mom says, "Person D, E and F have been asking about you."  Oh they have?  Well that's odd, because I haven't heard from them and I know they have my contact information.  These are a lot of questions that I don't have answers to. 

I was talking to a friend a few weeks ago and she brought up this topic with me after she'd read it on my blog.  And she said, "some people just can't handle these situations."  And I get that.  I do.  I guess my point is--what do these people expect from me once (if?) they reappear in my life once I'm done with treatment?  Do they think I'll welcome them back with open arms? 

With me, what you see is what you get. If I don't like you, I have a very hard time pretending that I do.  I don't know how I'm going to get past my anger at people that I can't push out of my life.  I realize I'm getting a little ahead of myself right now, but I'm more mad at myself for wasting so much energy being angry at these people.  They're not worth it.  So why can't I move on?

Reunions and other fun stuff

My cancer diagnosis coincidentally fell during my 20 year high school reunion and my 10 year business school reunion.  For those that don't know, I grew up in the San Francisco Bay Area and I got my MBA at Babson.  We had planned on flying out for the high school reunion--my folks still live out in California and Aaron and I were going to get a few days in wine country while the girls were with my folks.  We'd even bought our plane tickets and everything.  And then, of course, I got my news.  Since I was going to be in the middle of chemo, we decided to postpone the trip.  I was a little bummed to miss the reunion.  It would have been great to see people, but one of the upsides of Facebook has been reconnecting with people.

So I skipped the high school reunion, but now my Babson reunion is looming.  I need to decide whether to go or not.  I think my hesitation lies in being "the classmate with cancer".  I just want to be normal and I don't want people to treat me differently.  Or be sad or awkward.  Because I do have awkward conversations with people now.  With some people it feels like a big elephant in the room.  They don't know how to address it and they don't know what to say.  (You know what?  It's okay to not know what to say.  If somebody else I knew was going through this, I don't think I'd know what to say.  But it's okay to say, "I don't know what to say."  It's better than saying nothing.)  But I think the night would be really fun. Which gets to my next point: just because I have cancer doesn't mean I don't want to have fun right now.  If anything I need more fun.

Please don't think that just because I'm going through treatment that I want to stay home. I want to go out.   Aaron goes out a lot with his friends.  Some people have mentioned having a celebration when I'm all done with this.  I definitely want to have that celebration, but I don't want to wait until then to have fun.

In my prior post I had quite the pity party about feeling lonely and sad.  Chemo makes you crazy (that's a post in itself.  It's frustrating how moody I get, but it's reassuring to know that it's not just me. Also, I haven't forgotten about some of the other topics I said I'd get to).  With the AC chemo, it was just about getting through it.  The Taxol doesn't make me feel nauseous, so now it seems I just think about how lousy I feel mentally.  After my second treatment I was having an "episode".  Aaron asked if I wanted to go on a date night.  And no offense to him, but the answer was no.  I want to go out with my friends. 

There was a friend who wanted to go see a movie a while back.  She was out of town most summer weekends with her family and we had a lot going on with my folks and Aaron's family in late July/early August, and we never got together.  But I remember my friend writing at one point, "there will be lots of time for movies after this is all done."  And that just deflated me.

Part of the problem is I don't have the energy to reach out to people on my own.  We got some great offers over the summer to the Cape, Maine and some other places and for one reason or another, it didn't work out.  Those were really, really appreciated.  And we do see friends.  But sometimes I'd like to leave the girls with Aaron and get out the house to see other people.  No husband, no kids (sorry guys).

So I'm asking: if you have no plans some weekend, give me a call.  I'd love to go out!

Welcome to my pity party

I had my second round of Taxol this week.  They gave me fewer anti-allergy drugs which made the day of chemo more tolerable.  The thing that's been the hardest about this chemo is I feel more depressed.  I would get pretty down during the last chemo because I felt so lousy and I wondered if I could actually get through it.  This time I don't feel as physically bad, but I wonder if I'm actually more depressed because I'm so tired and have low energy.  I usually work at home the two days after chemo and that makes me feel alienated, which makes me feel even more depressed.  And throughout it all I just feel lonely and isolated.  It becomes a bit of a vicious circle. I try to get out and meet up with people, but there are only so many walks you can go on. 

When I'm thinking about what to write, I can be all over the place.  So here are some random musings I've had as of late:

1. If there are so many women with cancer out there, how come I never seem to see any of them in Natick or the surrounding towns?  Every time I spy a woman wearing a baseball hat I think, "maybe she's like me!"  But she isn't.  I saw a woman at Trader Joe's a few months back that had really short hair and she had little girls too and I was tempted to ask her if she just had short hair or if it was growing back, but it's kind of an odd question to ask somebody.  She seemed nice though.
2. My hair is slowly starting to grow back.  It is a dull, lifeless, mousy brown.  I hate it.  I know this is temporary, but I still dislike it.  I am considering dyeing it.
3. A lot of people ask how Aaron and the girls are doing.  Addie seems pretty clueless as to what's going on.  Belle has good days and bad days.  Most of her bad days seem to happen during my chemo weeks.  Even when I'm not going through treatment, she has sad and angry moments.  She has admitted that she is mean to me sometimes because she's mad about my boo-boo.  I think being able to acknowledge this is pretty insightful for a 3.5 year old.  She doesn't like what my boo-boo has done to me--it makes me grumpy, impatient, and tired.  This breaks my heart but I'm hoping that she'll actually remember very little of this experience. I suppose it will all become fodder for her future therapy sessions.
4. Throughout this whole thing I worry about what a bad mom I've become.  I'm short with the girls and have no patience.  Belle's already a daddy's girl and Addie seems to have leanings that way too.  In my depressed state, this makes me feel even lousier.  And become I feel like I've become a monster, I worry about pushing my girls even more away.  
5. If I haven't said it already, Aaron is the best caregiver I could ask for.  He has borne the brunt of my anxiety, tears, mood swings, etc., these past few months like a champ.  Let me tell you--I'm not an easy patient (shocker, I know).  And if the tables were turned, I doubt I could be as patient of a caregiver. The other day as I was tearfully thanking him for being so great, I said sometimes I feel like he's had more to deal with this whole time than me.  I can't imagine how helpless he must feel that there's nothing he can do to change my situation.  And to deal with the aforementioned stuff.  But then he pointed out, that I still probably have it worse because after all, I am the one with cancer.  Ha!  Good point.
6. I continue to be fascinated by people's reaction to my disease.  I've had people tell me they can't read my blog because it upsets them.  Or they tell me they don't read it at all with no specific reason, and they're sorry they haven't been in touch, but they're thinking of me.  There are also the people that ask incredulously how I'm working through this (usually with their head cocked and a concerned or skeptical look on their face).  And of course, there are those that tell me how "upbeat" I am.  Here are my responses to these:
1. Okay.  You know this isn't about you, right?
2. Seriously?  Don't bother.
3. We still have bills to pay and it's a good distraction.
4. While this year is hands down on the top 3 worst years of my life (12 and 13 were pretty bad years too), you do realize I'm not going to die, right? Unless my oncologist has told you something differently?  So while this sucks right now, it will pass eventually (or so I'm told).
7. I've also had people tell me incredibly personal moments about their own cancer scares or other health issues.  Those have meant a lot that people feel comfortable enough with me to share me those things.  

Sorry for the pity party posting.  

Chemo: The Sequel (a title that doesn't quite capture the jist of the post)

This past Monday I started the latest round of chemo.  It's a different type of chemo, so the side effects weren't supposed to be as bad as the initial round.  And all in all, I will (tentatively) say that this round has not been as bad thus far.  The biggest complaints are fatigue and muscle pain.  Monday was probably the absolute worst day because they gave me so much Benadryl to counteract any potential allergic reaction I might have to the chemo.  As with the same time, the schedule is four treatments over eight weeks. Cross your fingers (and toes!) that I don't get a cold this fall to set me off schedule again.

I wrote the above paragraph earlier this week and it's sort of funny that all I have to say about it is one paragraph.  But there really isn't much else to say.  I'm starting to bore myself (and you?) with my updates.  This just feels like my life now. 

Even if I don't post as often as I'd like to anymore, I think quite a bit about what to write.  Lately most of the ideas just float around in my head because the reality is, for better or worse, this is just one facet of my life--I'm still working full-time, I have two little girls, and any free time is spent with some combination of Aaron, the girls, and friends.  This really isn't any different from my pre-cancer (PC) life.  On weekdays, the goal is to get the girls into bed at a reasonable hour so Aaron and I have some time to just relax and decompress from the day.  Since I spend a good chunk of my day in front of a computer, I don't have a lot of energy to spend more time in front of one when I get home.  And the weekends don't tend to present many opportunities for writing either.  But then eventually, the thoughts are swarming all around and I just have to get my thoughts down.  Which is why I'm typing this at midnight on a Sunday (I guess technically Monday now) when I should be sleeping.  Tomorrow morning's going to be ugly.

I can't recall if I've mentioned this previously, but back when I was working with my treatment team to decide the schedule, they ("they" being the treatment team) were trying to decide where I'd get radiation done.  Aaron's depressed Russian barber strongly recommended a women in Framingham.  Framingham's close to Natick, that would work out well.  Coincidentally, the BI team mentioned her as a great radiation oncologist.  Unfortunately, a BI radiation oncologist had already insisted on working with me, which meant I was going to have to go into Boston every day for six to seven weeks.  For a 10-15 minute visit.  Are you kidding me?  As a result, I'd been dreading radiation just about as much as any other aspect of my treatment.

Well, at my post-surgery follow-up, I was told that it was fine if I went to the Framingham radiation place after all.  I don't know what happened, but I've never been so happy for a doctor to lose interest in me. Especially one that specializes in cancer.  So that was some good news. 

I've had two moments these past few weeks that have really struck me.  The first one was at this radiation oncologist's office.  We were in one of her rooms and on the back of the door was one of those laminated wall calendars that showed all 12 months.  I saw January, February, and March.  March was the last month where I was blissfully unaware of what I was about to go through.  I looked at the rest of the months laid out before me on the wall and and realized, "Wow, this year really is going to be consumed by cancer."  From April on it's been cancer cancer cancer.  And it will be that until early December at the earliest.  That's 9 months.  Holy crap, no wonder this has felt endless.

As a result, I've never been so happy for summer to almost be over because it means I'm that much closer to being done.  Labor Day, Halloween, Thanksgiving--they can't come (and go) quickly enough.

The other moment came at the eye doctor (funny, eye doctor and dentist appointments still come up no matter what your health status is).  Quick aside--I went to this appointment last Wednesday--two days after chemo started up again.  Aside from Monday, the worst day was Wednesday.  I was so tired and achy, I had nothing in me to interact with people.  I'd gone into work in the hopes of it waking me up.  It didn't.  I think I just came off as out of it and incoherent, which I was.

At my annual eye check-up the doctor said to me, "So last time you were nursing."   I stared at her blankly.  I was in nursing?  I was a nursing student?  God help us all--no way does the world need me as a nurse.  Ohhhh....I was nursing!  Yes, I WAS nursing!  A baby!  Phew.  And then I thought, "Holy shit, yes, at my last visit in July 2012 I had a 5 month old and I was still nursing."  I wish she'd just said breastfeeding, but it felt like a lifetime ago.  And at next year's appointment, I'll actually be on the other side. I might be recovering from reconstruction surgery, but that's it.  Needless to say, I can't wait for next year's eye appointment.

There are other things I've been thinking about lately, but they'll have to wait for future blog posts (forgive the lack of parallelism.  If you don't know what I'm talking about, never mind):

1. A philosophical discussion on all of the drugs I've been accumulating (prescription and herbal) and a reminder of why I never was a pothead.
2. Why I can't get past being angry at certain people but also why I haven't reached out for more help.
3. I'm starting to realize why so many women that go through this pay it forward
4. Why I hope that as a result of this I'll be a lot less self-absorbed and also be able to pay it forward
5. Why it's not necessarily fair to be mad at the people mentioned in #2.

Stay tuned!  I used to start these at chemo, but I have a hard time typing on my Kindle, especially once I get hooked up to the IV.  Which is unfortunate because until I get hit with the Benadryl, I'm on some pretty good uppers that give me great energy.  Perhaps the title of the one where I discuss people in #2 should be something like, "Channeling Taylor Swift." 

An overdue thank you for all of the support

One of the upsides (and I'm not sure there are many) to this whole experience has been the overwhelming support we've gotten these last few months.  As the next round of chemo approaches, I wanted to take this opportunity to say a long overdue "thank you" for all of the support we've gotten these last few months.  Not a week goes by that I don't get a card, flowers, email, FB message, phone call or text from somebody letting me know that they're thinking of me.  It is very, very much appreciated.

And the presents!  I could go on and on about the presents.  I've gotten a painting that somebody did herself (and it was really good!), turbans (and really cool brooches!), care packages with books and really thoughtful notes, scarves, gift cards to all sorts of things and more spa certificates to Bella Sante than I know what to do with (I'm getting better about making the time to go--this is a very good problem to have).  Oh, and people buy me lunch a lot.  Plus tons of stuff for my girls too.  And even more amazing, some of these presents have been from friends of my parents--people I don't even know. 

Every time I've gone to chemo I've gotten an awesome care package from my co-workers.  This past one had 3 bottles of wine and a bottle of beer from a favorite brewer of wine.  3 bottles of wine!!!!  And beer!!  I am so blessed to work with such great people.

And all of the meals and rides I've gotten have been so very, very helpful. 

Any time I get sad about people that I thought would be there for us but haven't (and there haven't been many, but there are some), I remind myself about all of the people that HAVE been there for us.  What's even more humbling is that many of these people I didn't know very well before I got my diagnosis.  I am truly, truly amazed by how great people have been.  I don't know what I did to deserve all this but we are very, very thankful. 

Thank you so much for sticking with me.  Chemo starts up again on Monday.  It's not supposed to be as bad as the last round. I'm nervous but not anxious per se.  I just dread having this poison going through my body.  I know it's intention is good, but it still sucks.  If all goes according to schedule, I'll be done on October 1 with chemo.  Then I start radiation around October 21.  In early December I should be done--sort of (more of that in a sec).  It still feels like a long road, but I do think that the worst is behind me.  Now if only my hair would start growing back...

From there I still have a few more things to deal with--10+ years of estrogen blocking therapy, getting my ovaries removed (early menopause!  Whee!) and reconstructive surgery for my new boobs.    

I'm not a big gusher and I don't know what I've done to have people be so supportive, but again, I'm very, very appreciative and continue to be overwhelmed.  I certainly owe so many people individual thank you cards and unfortunately I doubt I'll achieve that any time soon, so please know there aren't enough words to say how grateful I am to everybody.  Thank you so much!!!!

It's that time again...

...time to volunteer for stuff!  Like meals!  And rides!  Here's the link.


Thanks in advance!