What To Do With Down Time? Oh, Wait...

...and now there's a lull. For the first time since I was diagnosed with breast cancer - 6 weeks ago today (has it really only been 6 weeks? And at the same time, has it been 6 weeks already???) - I have some time when there are no doctor's appointments, no procedures, no bloodwork or lab tests to be done.

My last plastic surgeon visit was Aug 30th and I start chemo on Sept 9th, so there's a good ten days where all I'm supposed to do is continue healing and improving and getting stronger for the rest of this journey.

I'm not sure I do well with down time.

I went back to work this week, trying to get some normalcy and routine back into my life. But no one really expected me to be there, so there wasn't a whole lot to do right away. I found ways to keep myself busy, of course - did some organizing and catching up on projects - but they weren't my most productive days, in part because I couldn't quite figure out what to DO.

And both days I've been back at work so far, I seem to have hit a wall around 3-4pm. Yesterday I was sitting at my desk going through files and suddenly at 4:15, I felt like I could barely hold my head up. I honestly debated whether I was awake enough to drive myself home. (I was, but it took more concentration and effort than the commute usually does.)

On Tuesday, I left work around 3:30 to come home and grab a nap before the kiddos got home from school. I felt fine by the time they came home and we spent the evening over at my mom's, but then I couldn't sleep at all that night. So yesterday, despite barely being able to stay awake for my commute home, I didn't let myself nap.

Dave had taken the kiddos out to his dad's for dinner so I could rest in a quiet house, which I appreciated, but I also hate not getting to see the kids. I did actually get to help with bedtime last night, for the first time in several weeks, which was nice. And then I crashed for a good 9 hours.

I woke up several times to try to decide if I was up for some exercise before it got too hot, but I ultimately decided I needed sleep more than I needed to go for a walk. Now, if I knew I'd be able to run instead.... but no. Not healed enough for that amount of impact yet. Bah.

So I'm spending part of this lull trying to figure out how to deal with the late afternoon wall of exhaustion that completely wipes me out without causing insomnia later and tossing and turning until 3am.

A few nights ago, when I was too tired to help Dave get the kids to bed, I grabbed one of the cancer books a friend gave me and started flipping through it. I figured I was relaxing in bed rather than chasing the kiddos around, but I was still awake and able to interact with them when they ran into my cancer-be-gone healing room.

The book itself seemed fine - entertaining, informative, some good advice on how to approach cancer treatments and side effects - and then the house was quiet and I was exhausted and quite happy to turn out the lights and go to bed. Except once I had cancer advice in my head, I couldn't shut it off.

I honestly have not been too concerned about losing my hair to chemo. I had a super short pixie cut for years that would quite often have people stopping me on the street to tell me how great I looked. I just spent the last 2 years growing that style out, which is a bit of a pain in the ass, but at least I know I can rock the short styles as my hair comes back. And my oncologist actually told me that with my particular chemo cocktail, not everyone actually loses all their hair. Some people just have thinning. I have incredibly thick hair, so I could definitely get away with some thinning and not look like the typical cancer patient.

Because I had short hair for so long, this has been the first summer in many, many years that I've had to deal with any hair falling on my neck. It's been a weird sensation and I typically find myself lifting my hair off my neck to be able to fall asleep at night.

When I couldn't fall asleep the other night, thinking about tips on wig shopping and bra shopping while in treatment and during reconstruction, I realized I just kept adjusting my hair on the pillow to try to get comfortable.

Comfort at night is still a big issue since my surgery. I've been a lifelong belly sleeper, much to the dismay of my chiropractor, but for almost 3 weeks now, I've been flat on my back propped up on at least 4 pillows here and there. I am SO ready to at least roll on my side for a while, curl up in a little ball, snuggle again... but that's extremely painful. So instead I adjust the pillows again, kick the blankets out of the way, move another pillow under my knees, adjust the stuffed hedgehog under the other arm (it's really nice how he's shaped like a football and fits right in the crook of my arm to keep anything from resting too heavily on the sore spots)... and try to fall asleep on my back again.

So as my mind is whirring with cancer advice and I'm tossing without turning as much as possible, I realized just how much I was adjusting my hair off my neck. My first thought was, "Well, if I go bald, at least I won't have to worry about the hair bugging me when it's hitting my neck at night." But then I realized I really will miss my hair. It's incredibly thick and really, really soft. When it was short I had to use a lot of styling products, but now that it's grown out again, I honestly wash it and walk out the door - no products, no styling, no drying or straightening... it's just good hair.

Honestly, if you see me before I (maybe) go bald, feel free to touch it. There's a lot of it and it's soft and I don't mind people petting me. But once I start chemo, if you see that I still have hair, keep away from it. I don't want to lose it if I don't have to, despite all my talk of being confident that I will be a hot bald chick.

So this is where my brain turns when I can't sleep - what if I lose my hair and I'm NOT a hot bald chick? What if I'm just one more cancer patient who looks sick? And once I'm (maybe) bald, will I really have to start wearing makeup to NOT look like a cancer patient? I hate wearing makeup and try to only do it for really big events, maybe 3-4 times a year. If I start wearing makeup now, will I ever stop? And what's wrong with looking like a cancer patient when I AM ONE?

Oh, right, people stare at the sick and frail and worry that it's contagious and avoid them. And if I'm not feeling sick on a given day, I certainly don't want to LOOK sick just because the poison I'm pouring into my body makes me lose my hair.

Crap.

This is not what I should be concerned about. This is not where my mental energy needs to be going. I have a million and a half other things I could and should and want to be thinking about. But it's 1 am, I'm tired and I can't shut it off.

And what if my hair comes back completely different? I know it's vain and kind of stupid to worry about, but I've kind of always had good hair. Not every single day, obviously, but as a general rule, when I was loathing other parts of my physical self, at least I could count on my hair generally looking good.

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And now the lull is over. I started writing this post this morning before the kids were awake, just navel gazing and thinking about cancer and hair and other stupid shit.

I've had a sore throat for the past two days, so I decided to work from home today rather than expend any energy on the commute. The kids are in school and Dave spent the afternoon working at his mom's today, so I have actually had a rather productive day.

While Dave and I were having lunch before he headed to his mom's place, the doorbell rang. Neither of us were expecting anyone, so he went to the door.

When I saw him step outside to sign for something, I followed, curious as to what it might be.

We got a certified letter. From my plastic surgeon, Dr. Jacobsen.

Apparently, my writing here on my own personal CaringBridge site which is for my own healing and processing and venting about my cancer journey to my friends and family who love me and want to know what's going on in my life - this counts as a public forum. And because I have made it apparent through my "strongly worded criticisms" about his care that I am "significantly unhappy" with him, he is no longer going to continue my surgical care. Unless I give him a formal apology, which he is glad to accept.

On the one hand, I certainly did not intend to hurt his feelings with my ranting here to my friends and loved ones. But on the other hand, as a patient, I don't think my expectations were out of line and he certainly wasn't providing the type of care my other two doctors have been.

So I have contacted my other cancer doctors and gotten referrals for new plastic surgeons. And I've been given referrals for other plastic surgeons from friends as well. Now I just have to find a doctor who I like, who is comfortable providing information and answering questions, who wants to be a partner in my ongoing cancer care rather than expecting to drive the bus and just have me go along for the ride - who is also willing to accept a "problem patient" as I am now obviously labeled and to finish a job started by another surgeon.

It seems when you take a car to a mechanic, it doesn't much matter who you go to when it comes down to actual ability. But I'm guessing the human body is a bit different. This is the man who started this job and has actually been inside my chest putting things in there for me to keep forever, and I have no idea whether it's easy or dangerous or even likely that another surgeon will want to finish the job.

I never once doubted Dr. J's ability as a surgeon, I do want that to be perfectly clear. That's the only reason I went back to him after he referred to his patients as "the ladies" the first time I met him. But he wasn't meeting my expectations when it came to being able to answer my questions or even really feeling respected as a patient in his office, so I suppose this is a good move for both of us.

But of course, I'm now the one who has to find a new surgeon mid-way through cancer treatment.

Did I say I wasn't good with down time? Lull over. Back to busy. Whew.

<3

-B-