Radiation is boring and fears put to rest (for now)

Eight treatments down, 25 to go.  Radiation is boring and a grind.  After three more treatments, I'll be a third of the way through.  It's not "hard" per se, but it's not easy either.  At least I'm not having any side effects yet.  I'm getting along better with most of the staff, although one or two still call me Rachelle. But each day I get to mark off one more treatment.

I mentioned a few weeks ago that I was having pelvic pain.  I ended up seeing a gynecological oncologist (say that five times, fast or slow) and she examined me and was sure I was fine.  That said, she sent me for an ultrasound, more for my piece of mind than hers (I think).  The good news is while she wanted the ultrasound soon, she wasn't in a rush to schedule an emergency ultrasound, which I took as a good sign.  I finally had the ultrasound on Halloween.  I don't know why, but it didn't register until I got there that not only was I in the same building, but I was in the exact same room as when I had my biopsy in April.  In fact, it had been almost exactly seven months since I'd been there. 

Even though the oncologist was confident my pelvic pain was not a result of ovarian cancer, it was still stressful getting the ultrasound.  The technician's face was hard to read and of course you can never tell what anything is on those ultrasound screens.  Also, prior to April 1 of this year, I had associated ultrasounds with being pregnant with my two beautiful daughters.  Now it represented cancer.  And of course, being in the same room brought back how naive I still was to this whole thing.  I remember being a little concerned but I was too young and healthy to get cancer.

At one point, the technician was listening for something during the ultrasound.  I'm not sure what, and I didn't ask, because I wasn't sure I wanted to know the answer--was she listening for the presence or absence of something, and was I passing the test in a good way?  Whatever she was listening for, to me it sounded like the wind howling through a frozen tundra.  All I could picture was this barren place with the wind blowing snow and ice around.  A bizarre image, I know.  I was used to hearing my babies' heartbeats when they turned on the volume during an ultrasound.  So that made me a little sad, because I'm never going to hear that sound again for myself.

While I don't have the final answer, all signs point to no ovarian cancer.  I feel like I should be more relieved than I am.  I think I'm mostly too tired to feel that relieved.  Even this post feels more down and negative than it's intended.  It's intended to be reflective rather than sad or scary, but I'm not sure I'm coming across that way.

I'm starting to realize I'm going to need a serious break when this is all done.  I don't care if California won't be that warm--we might have to have our make-up vacation to California sooner rather than later.  Or maybe someplace warm and tropical!

Rachele goes to the Radiologist

Radiation started today.  Even though today was only my first visit, I’m pretty sure that I already have notes in my file about being a “difficult” patient.  Here are some examples of my interactions thus far (I apologize in advance if the formatting seems off.  It's sort of driving me crazy):

1. I had my initial consult with my radiation oncologist in August.  This is essentially a meet and greet to get a sense of what radiation is like and to meet my radiation oncologist.  This meeting was uneventful.  I provided my PCP’s name, not once, but at least twice in this initial meeting to a few people (this is important for later on).
2. Before radiation starts, you go in for your mapping.  The radiation team figures out where they’re going to point the radiation lasers and you get tattoos so they know where to point what I like to call the "radiation lasers".  This happened between my third and fourth chemo treatment back in September. When I checked in, I had the following conversation with the woman at the front desk:
• WAFD:  “We have a note here that we need the name of your PCP.”  
• Me:  “You’re kidding me, right?  I’ve given this to you at least twice already.”
• WAFD: “Yeah, sorry.”

Needless to say, this filled me with confidence about the practice.  
    3.  After the mapping, I was told they’d be in touch about the number of treatments I needed and when my daily slot would be.  Super.  I finished up chemo, and before I knew it, I was a week away from starting radiation.  Except that I’d never heard from the Radiation office.  So I called to see what the deal was. Here's how that conversation went with one of the nurses:

• Me: "Hi, I had my mapping a few weeks ago, and I start radiation next week, and I was checking in to see how many treatments I'm going to be getting and when my regular time slot is going to be."
• Nurse: "Oh, we go over all of that at your initial radiation visit.  The schedule and availability changes as people finish up radiation."
• Me: "Perhaps I misunderstood, but that's not what I thought you told me at my mapping appointment.  Waiting isn't going to work for me.  I'm trying to plan my life here, so I'm going to need that information now."  

I got my slot.  I realize that things happen and people might have to extend a few sessions because they previously missed sessions, but the last time I checked, that's what a calendar is for.

4.   After today's radiation treatment, I met with a nurse.  She called me Rachelle.  I corrected her on the pronunciation of my name.  This is how that conversation went:

• Nurse: "Oh...it really looks like Rachelle." 
• Me: "Yeah, well it's not.  Sometimes people get confused because of the single l."
• Nurse: "I think it was the e at the end that threw me off.  Do other people call you Rachelle?"
• Me: "No, because it's not my name."

And scene.

One down, 32 to go.  I can tell they like me.  It can only deteriorate from here.  At least the actual radiation oncologist is nice enough.  She hasn't acted like this doctor yet (thanks for the clip, Erin!):

New diagnosis: Hypochondria

On Tuesday it will be three weeks since chemo ended.  Radiation starts on Tuesday.  Tuesday also marks the day I get to start Tamoxifen (I love Wikipedia's definition--antagonist of the estrogen receptor in breast tissue).  I have been told anecdotally that mood swings are a side effect of Tamoxifen, so if I interact with you in the next few weeks and suddenly burst into tears, that is most likely why.

While I still have 6 weeks left of active treatment, the end of chemo has been the first time since April that I feel like I've finally noticed my surroundings.  Which has provided a hint of what my post-cancer life may become: thinking that every ache and pain is a new cancer.  For example, earlier this week my stomach hurt.  This inevitably led me to wonder, "what are the symptoms of ovarian cancer"?  Turns out, stomach pain is a symptom.  Stomach pain is also just plain stomach pain too, but it led me to wonder, "what if when my ovaries are removed next year, they find I have ovarian cancer too?"
 A rational person would likely think, "Rachele, that's silly.  You probably don't have ovarian cancer."  Well you know what?  I don't like odds anymore.  I never in a million years thought I'd have breast cancer and look how that turned out.  While I'm really getting morbid, if I'm unlucky enough to get breast cancer, then it also means I'm unlucky enough to have something terrible happen to Aaron, the girls, my parents or my friends too.  This is how I think nowadays.  Basically, I don't feel safe anymore.  If I can get cancer, then lots of other bad things can happen too.

To add to this feeling, some of you have asked what happens when treatment is all over.  How will I be monitored moving forward to make sure I don't have to go through this again?  At a high level, my team basically monitors how I'm feeling.  There might be tests here and there, but there really aren't any tests or scans that are done on a regular basis.  Basically, you just have to have faith that it will get caught before it gets too far.  This has outraged and frustrated some of you, to which I usually think, if it makes you feel that way, how do you think I feel?

So that's what's been consuming me this week.  I did call my oncologist about my stomach pains and they're getting me in to see the doctor that will be removing my ovaries.  The intent is to put me more at ease (I think).  I'll let you know.

In the meantime, at least I can shift my idle mind onto radiation.  As I told some friends earlier this week, I'm pretty sure there are already notes about me in my file at the radiation office.  But that's a blog post for another day.

Please don't do this for me

Here's another possible post-treatment blog idea: Blogging about bizarre cancer "support" days.  I happened to see an ad on Boston.com for this whole Go Bald on October 18.  I'm not sure how well known this idea is either in or out of New England, but I've been puzzled since I saw it.  Really?  Am I missing something here?  Did they clear this idea with Mike before he passed away (or "lost his battle with cancer", a phrase I loathe, because it implies that those of us who survive "win" and those that don't, "lose")? 

Let me just say this now in case anybody is thinking of jumping on this bandwagon on my behalf:  please don't.  I've given up the hats, scarves and wigs already so this is a moot point.  I get it, it's supposed to be symbolic, but I think it's kind of thoughtless and insulting.  I don't know a single person (and granted, I've interacted with more women with cancer than men) who enjoyed losing their hair.  It's an emotional and terrible part of this experience that I would prefer not to be reminded of.  If people had wanted to shave their heads in solidarity with me back when I lost my hair, that would have been very sweet of them.  But again, unnecessary.  I'm sure those of us who lose our hair are far more subconscious of this than any of our family and friends, but the last thing I would want is for anybody to go bald for me.  For a day.  Wearing a bizarre looking, flesh-colored cap.

I don't know the people who started this movement, but I'm sure they had good intentions.  I'm not angry at these people, but I suspect this whole concept is coming from well-meaning people that never had cancer.  I could be wrong.  And I don't really care, so don't feel like you have to research this for me.  This isn't like the Race Director incident where I want these people to go down.  I just think if you want to support somebody you love that has cancer, there are much better ways to go about it.  Here are some ideas:

1. Send him a card or call him to let him know you're thinking of him.
2. Bring her a meal.
3. Take him out to a movie.
4. Call her up and tell her you want to take her kids off her hands for a few hours.  
5. Bring a meal to somebody you don't even know that has cancer (there are organizations that organize things like this.  Their names are escaping me right now).
6. Offer somebody a ride to chemo or radiation.
7. Volunteer at a cancer event or for one of the organizations that's listed on the Beneficiaries page of the Bald site.
8. Raise money for a cancer cause where you know where the money is going.

For the latter, I am leery of big non-profits where you're not sure where the money is going.  I mean, yes, I realize they need to pay people to run the said cause, but I think there are sites where you can see how these non-profits actually spend their money.  Also, you may want to donate money to a place that focuses on raising money for research rather than awareness.  Or go back to idea #7 and just volunteer. 

The above are not veiled attempts for me.  If I wanted something, I'd ask for it.  That being said, I certainly wouldn't turn away any fairy godmothers who wanted to take my children away from me for a few hours (to the person who did this a few months ago--you are awesome!  This was really, really appreciated).  Seriously, I'm good for right now, I just wanted to get on my soapbox to share my thoughts on an odd awareness idea. 

Another milestone checked off of the list: Chemo is over!

Yesterday marked the end of another milestone--the last chemo!  I rode in with two of my best friends and their new puppy Tugger.  I was so happy to see Tugger (I was really happy to see my friends too, but I hadn't seen Tugger in a while)!  He rode in my lap the whole ride in.

Tugger and me

I later told one of our cats, Doppy (yes, I talk to my cats.  Interestingly enough, they talk back as well) that Tugger gave me more love in the hour ride into BI than Doppy had given me in the three (four?) years he's lived with us.  His response was, "And your point is...?" 

Oddly enough, the end of chemo has been a little more emotional than I was expecting.  I am always worn out at the end of a treatment, so it could have been that, but it was one more milestone that I could check off.  Tomorrow will be 6 months since I got the news.  It's only been 6 months? It feels like a lifetime.

The good news is so far my usual post-chemo funk isn't kicking in.  I suspect that the euphoria of being done is probably helping with that.

So what's next?  I have the next three weeks off and then I start radiation.  I don't know how many radiation treatments I have yet, which is a little frustrating, because I just want an end date.

By the way, I did go to the Babson reunion.  It was fun.  I don't think I was very recognizable in my wig (at least initially).  The advantage of this was that I was able to avoid talking to anybody I didn't want to talk to.  The disadvantage is I had to make the effort to approach people.  There were some people I tried to wave and say hello too and all I got was a blank stare in return. 

My hair's grown considerably in the last few weeks so I'm starting to re-explore the world without a wig, scarf or hat.  I went out today a few times without wearing anything on my head.  It was actually very liberating.  I'm playing around with faux-hawks right now.  I am re-exploring the world of hair products to shape my hair.  We'll see what arena I'm ready to go next--it's one thing to go around my neighborhood.  It's another to brave daycare, work, and working out.  More to come on this.