Advice for the newly diagnosed

The other day I got a call from a friend:  Her 36 YO niece had just been diagnosed with breast cancer.  To make matters worse, she's 6 months pregnant with her second child.  I offered my phone number and whatever assistance I could provide.  It kind of got me thinking of what advice I'd give to my friend's niece or anybody else that has been recently diagnosed.  So here goes:

1. First of all, you're going to get through it.  It's not going to be easy, but you will.  You have a difficult road ahead of you.  But YOU CAN DO THIS.  Before you know it, this will be a bad, distant memory.  One that will shape and influence you for years to come.
2. Learn to ask for help.  This was a tough one for me, but it made a huge difference.  Sites like Helping Hands are amazing.  We were never in need of a ride, meal, or a favor.
3. You'll be amazed by the generosity of people.  People will want to help.  People that you hardly knew prior to going through this. On the other hand, there are going to be people that you thought would be there for you that won't.  Not everybody knows how to deal with your diagnosis.  Feel free to cut these people from your life.  If there's any time to reassess your life and priorities and who you want to spend your time with, it's now.  People will show their true colors.
4. You are your own best advocate.  Find the oncologist and medical center that's right for you.  I've known people that went to Dana Farber and loved it.  I've also known people (including myself) that didn't choose Dana Farber because everybody there has cancer.  For some, the idea of going to a center where everybody is there for the same reason creates solidarity.  For others, it can be depressing.  I preferred to go somewhere (like Beth Israel) where people were at the hospital for all sorts of reasons.  It's up to you.  Also, if you're surgeon is pressuring you to do something, seek out another surgeon.  I was pressured to get a double mastectomy and it wasn't until I broke down in my oncologist's office that she said I didn't have to get the double right away. 
5. Your kids aren't going to care that you have cancer.  This is a blessing and a curse, especially if your kids are little, like mine are.  There are going to be days that you don't want to get out of bed, but if you have kids, you have to get out of bed. If anything, your kids will get you through this too because they will be the reason that you go through this fight.
6. Get a wig with real hair if possible.  I never got used to my wig.  It was itchy and uncomfortable.  People swore they couldn't tell it wasn't my real hair, but I could tell.  Since I didn't like it, I wore scarves.  Nothing says "I AM GOING THROUGH CANCER TREATMENT" like a scarf.  I met somebody going through treatment who had a wig made out of real hair and it looked amazing.  They're expensive, but if you're worried about losing your hair, I think they're worth it.  God forbid, if I have to do this again, I'll get one of those.
7. Feel free to pull the C card.  You're going to be tired and feel like crap.  If you get invited to something and you don't want to do it, this is probably the one time in your life that you can pull the Cancer card and decline activities that you just don't have the energy to do.
8. I found the end of treatment to be rather anticlimatic.  People got me presents for finishing up chemo (people buy you a lot of presents for all sorts of random things), but I still had to go through radiation.  Radiation is a cakewalk compared to chemo, but it's still part of treatment.  All of a sudden treatment is over and you're expected to get back to regular life.  That was kind of weird.
9. People (still) say insensitive things.  And people tell you very personal things.  Tell the former to f*** off (or just say it in your head).  It depends on the person and how you're feeling on any particular day.  I don't think most people mean to offend, but people will try to relate to you in all sorts of ways.  Here's the thing--everybody's dealing with something.  You know that, I know that.  For every insensitive person, there were people who shared very personal and touching stories about their own personal struggles that had nothing to do with cancer.  That part was very touching.
10. Some people are experts on what causes cancer.  If I read one more FB post about a "scientific" study about how fat, sugar, dairy, or meat causes cancer, I will scream.  I find the people that are self-proclaimed experts on what causes cancer have no idea what they're talking about.  I have come very close to telling these people off, but I have yet to do so (shockingly).  It's probably only a matter of time.  I often find the people with these opinions have never gone through cancer treatment.

That's what comes to mind initially.  If you're reading this and recently diagnosed, I hope it helps.  For those friends who have also gone through this, would you add anything?

Finally, a trip to California

You might remember (or not, I swore I wrote a post about this but maybe I never did), but right before I got my diagnosis I'd booked a family trip to visit my parents in California.  It was also my 20th High School reunion.  That was painful to write.  Anyway, we postponed the trip because I was going to be right in the middle of my chemo treatments.  We finally got our re-do.

We left on Wednesday, April 30 and flew on Virgin Airlines.  I'm not a fan of the airport but Virgin made it as pleasant as possible.  The flight was an eventful as it can be with a 4- and a 2-year old trapped in a flying box for 6 hours.  Overall, it could have been worse, but we were "that family" a few times.  The upside is the flight attendants soothed us with free alcohol so that helped.  A lot. Plus I was able to watch TV off and on--I got my Bravo reality show fix and it was delightful.

Overall, the week was great and went by too fast--the girls got a ton of time with my parents, I got to visit old haunts and see old friends.  Aaron and I even got to escape to wine country for a few days.

The visit didn't start off hitch-free.  We stayed in a hotel so we could have a place to decompress at the end of the day.  When we checked in, they told me they didn't have a room with double beds because there had been some "incidents" and not all of the double bed rooms were available.  I was soooo tempted to ask what they meant by "incidents", but I figured ignorance was bliss in this case.  So I pleasantly (because I am nothing if not pleasant...ha! that's a joke, I wasn't very pleasant) asked them how they were going to solve this problem, because this was a problem.  They offered me a room with a King-size bed.  Um, one bed for 2 adults and 2 kids?  That's not going to work.  They could offer me a free room in addition to the room with the King bed.  Are the rooms adjoining?  No?  Well that doesn't help us either.  But I took the free room (which we never stepped foot in) and we all cozied up in the King size bed.  I was next to Belle, so that was a little better for Aaron, who was next to Addie and who is a kicker, flailer and head-butter.

The girls woke up at 5:30 the next morning.  I got them and me ready as quickly as possible.  While I was in the shower, Addie started crying.  What now?  Oh...she'd taken off her diaper and pooped.  On the floor.  Now we were that family again. We hosed Addie off, cleaned off the poop and I took them out to breakfast so Aaron could get a little sleep.  We left a path of destruction at breakfast and killed time until Target finally opened.  Addie pooped again (why does this child poop so much?) so we went to a Safeway to buy diapers (because of course had I brought any with me on our morning adventure?  Of course not).  Throughout the Safeway visit I'm trying to control my wild children.  You might not realize this, but I am attempting to raise children that are well-behaved (at least in public).  The cashier told me to relax.  If I wasn't so desperate for diapers and if I'd known where another store was, I hesitate to think about what I would have said or done to that cashier.  Instead I gritted my teeth, paid and left.

So, Target.  My mom had sworn up and down that we didn't need to bring any clothes for the girls--she had it covered.  Great!  Except for the fact that when we got there it was in the 90s and she had flannel PJs for the girls.  And all of the daytime outfits were pants and long-sleeves.  Not a skirt or dress or a pair of shorts to be seen. Oh well, eventually it would warm up in New England (right?), so we could use it then.

The girls ended up staying with my folks every night after that first night.  I was a little worried about the girls wearing out their welcome before Aaron and I headed out to Wine Country, but my folks and the girls all had a blast.  We saw old friends, spent time with my folks and saw a ton of other people that I hadn't seen in ages.  On Sunday and Monday Aaron and I escaped to Wine Country.  It was really nice to get away.  Sadly, one of our cats died while we were gone.  But that's a whole other story entirely...

April 3, 2014: A year later

One year ago I got my diagnosis.  I've spent a lot of time wondering how I was going to feel when this day came.  Earlier this week I felt some of that anxiety from last year came back.  But all week I've kept forgetting what Thursday represents, which I think is a good thing.  I might think about it here and there tomorrow, but I don't anticipate that it's going to consume my day.  I got the call from my doctor just after seven, and I have a work thing tomorrow night, so I imagine that will be a good distraction for the actual anniversary of "the moment".  All in all, I thought I was going to be more reflective.  But I'm not that interested in reflection.

Ever since treatment's been over, I've just wanted to look forward.  I love that there are people I've met in the last few months that have no idea what I went through--they just think I have short hair.  More than anything, I'm thankful for the new friends that I gained as a result of last year.  A lot of people came in my life last year and I'll always be thankful for that.  We couldn't have gone through the last year with all of the amazing support that we received.  Many of those people have faded back to their lives and I'm not in contact with all of them, but I'm lucky enough to count some of them as better friends who are in my life a lot more.

This is my 48th entry.  I had a busy few weeks of prep sessions with the plastic surgeon, follow-ups with various other docs and an MRI (which was clear).  I have a mammogram coming up and a check in with my oncologist in May, but other than that, I'm mainly looking forward to our vacation to California at the end of the month!  In the interest of blatant self-promotion, don't forget my new blog!

A visit with the plastic surgeon

Every once in a while I think, “Maybe I shouldn’t share so much.”  Especially when I’m moping about things post-surgery.  Because when I read some of posts after the fact, I sound pretty pathetic.  But you need to understand—I don’t like taking breaks.  I find getting things done and being active relaxing.  So being forced to sit and do nothing is very frustrating.  I’m told that not everybody is like this.  Now imagine having to live with somebody such as myself and you can imagine some of the challenges that Aaron faces as my husband.

Earlier this week I had a trip to the plastic surgeon.  As you know from past posts, this is always a fun experience for me (please note my sarcasm).  As somebody that likes to connect with people, I get frustrated when I don’t.  I’m pretty sure this guy doesn’t smile.  Ever.  I have to remind myself that I don’t have to like him.  He does amazing work, that’s the point.  I don’t dislike him as much as I did when I first met him, but I still dislike him.  To make matters worse, this visit was…awkward.  He took pictures, which was uncomfortable.  He did that at my initial visit, but he wanted updates.  Everyone's staring at you, you feel violated.  I couldn’t get out of there fast enough.  Needless to say, I more than earned a glass of wine that night.

A prize for my visit to the plastic surgeon

 

The surgery is tentatively on for August 18.  I'm just waiting to get the confirmation from the surgeons.  They will move fat and tissue from my belly and these will be my new boobs.  Some people have asked if I have enough fat for this.  It's very sweet of you to say so, but the answer is yes.  The plastic surgeon got a good feel of my fat yesterday too.  To his credit, he did say they’d be small.  A little tummy tuck and a lift?  Sweet.

This recovery will be the most difficult one out of all the previous surgeries.  It’s four to five days in the hospital.  I really hope I have a better roommate this time around.  Similar to last time, I won’t be picking anything up for two weeks.  He said to expect to lay low for about four weeks.  I keep telling myself I’ll be better this time around, but who am I kidding?  It will be so weird to be in the hospital for that long.  If I’m lucky I’ll be home earlier.  Although since I’m probably a low readmit risk, I’m a good opportunity for the hospital to make money.  The last sentence is a joke for those of us in healthcare.

Eventually I’m going to run out of things to talk about that are cancer-related.  Really the only thing left is my reconstruction at this point (hopefully).  I imagine I’ll do a post when I hit my anniversary too. Which is a good segue to a post I wrote a few weeks ago about my new blog—book reviews.  Let me know what you think!

Moving on

Okay, enough with self-pity and guilt.  Thanks for all of the support the last few days.  Today's a new and better day.  I have President's Day off for work, so it's an another day to relax.  I went for a little walk, hopefully I'll be able to catch up with an old friend later today, and we'll see where the rest of the day takes me.  We'll take the girls to my in-laws tonight and the girls will have a blast there for the next two days.  I'm ready to go back to work tomorrow.  It's time to move on with my life.   

Frustrated

Yesterday was a boring day of more bed rest.  I got up this morning ready to spend the morning with the girls.  Two and a half hours later, I'm back in bed, not feeling great.  The surgeon wasn't kidding about the importance of not picking up anything more than eight pounds.  This is extremely frustrating.  I know it's irrational, but I feel like a failure. 

Of course, Aaron is going on his first work trip in two years on Tuesday.  This didn't feel daunting until after this morning.  I was planning on asking for help.  Since I can't pick up the girls, I was going to need somebody to help get ready in the morning and somebody to come over at night.  This is mainly for Addie--Belle can get in and out her bed, car seat, etc. fine.  But Addie's still in her crib and can't climb into her car seat.  But at this point they're just going to go to my in-laws while Aaron's gone.  This bums me out a lot but I know it would be extremely difficult to work all day and take care of the girls.  I'll miss them all like crazy but at least I'll get some time to myself.

I hate admitting that I'm mortal and need help.

Post-surgery update

Hi all,

It's me, post-menopausal Rachele.  Not feeling too bad two days post-surgery.  Much better than I was feeling on Tuesday.  Tuesday had more of "I feel like I'd been beaten up" feel to it. Today it's more of a "I did a really hard ab workout".

I definitely didn't prepare myself for how long this was going to put me out of commission.  No strenous exercise for at least two weeks.  Maybe I can start jogging in two weeks, but no heavy lifting (more than 10 pounds) for more like a month.  A month????  I can't pick up my girls for a month?  If I do, I risk a hernia, which I definitely don't want.  So fine, I'll rest.  Belle stayed home from school on Wednesday because she wasn't feeling great and because of the snow, both girls will be home this afternoon.  So no rest for the weary.