This has been the main question people have been asking.  So Round 2 of chemo starts tomorrow, continues next Tuesday, and then the week after that is my “week off” from chemo.  Then the next week, Round 3 starts.  Round 1 did not make me feel too bad, so I am not worried about Round 2.

In general I feel really good.  I am still “tapering” off the post-brain-zapping steroids (there to prevent brain swelling), but am down to a low enough dose that I can SLEEP well, thankfully.  That was a bit annoying.

The hard thing to deal with right now is that my hair is falling out (from the chemo) with increasing speed and enthusiasm, starting 10 days ago.  I made it home from our trip with hair but the amount on my head is looking less and less respectable!  Soon I will give up and make it all go away.  I have LOTS of nice hats so my head will be warm.  Maybe I will get a tattoo.

Speaking of tattoos:

I took it pretty easy Thursday and Friday, for me, and Saturday we had wonderful friends visiting overnight. I was tired & a bit loopy from the anti-seizure medication I’m on (standard prophylactic post-procedure stuff, along with steroids), but greatly enjoyed myself. This afternoon I took a walk and gradually edged myself into bed where I have been using my brain but resting my body ever since.

The people who are living with metastatic cancer are showing up for me–through personal connections with some of you, thank you!, and just by the power of the web (and those of you helpfully pointing me to where I need to look). It has been really good to be able to people the landscape in front of me with the existence of these folks, even if I don’t know them, even if I don’t ever call them in the end.

What next week offers: chemo tomorrow AM, a final postpartum visit with a recent client Tuesday, a follow-up appointment with the radiation oncologist Thursday, and PACKING! for the Grand Canyon emergency family adventure trip that starts Saturday AM (and brings us home Thursday the 30th).

So far I have only had the kind of cancer in which it’s the treatment that makes you feel so sick and unhealthy, not the cancer.  I guess this makes me lucky.

However, it is kind of a weird situation to grapple with mentally.  You are walking around harboring a deadly disease and you feel fine, you look fine, and you are not fine*.  Then chemo makes you tired, sick or sickish, prone to catching whatever’s going around, and possibly bald.  Plus a varied bouquet of other side effects depending on the chemo.  And so you feel sick for sure.  But it’s the medicine that’s doing it to you. Bizarre.

Thus it is almost comforting in a weird way to undergo something straightforward like “a little surgery” because, for that, you start out feeling fine, you get operated upon, you naturally feel wounded afterward, it is easy to understand why, you have to rest, you gradually feel better, and then you are all better and back to normal.

Right now I think I am gearing up for undergoing something much less straightforward, without a simple start, middle, and end.  I don’t really like that.

*Navigating this paradox is the source of this blog’s title.

Here we are again.  I really never thought I’d bring this blog back to life but it is going to be the way I keep everyone up to date on my latest adventures with breast cancer.  And, if last time is any guide, it might be where I collect resources and information, share pictures, and post the odd thought on being in this odd position.

Having an invisible illness, especially one that doesn’t even have any symptoms at the moment, makes you an outsider in the regular world as well as an unfortunate insider in the world of the hospital or the world of oncologists.  It is a deeply odd feeling to be looking through cancer-drug trials on clinicaltrials.gov to see if I qualify for a particular trial or not; when I do, I think, Yay!, and then immediately think, why are you happy that you fit the profile of someone who would need to enter a drug trial for metastatic breast cancer?  (Well…consider the alternative.)

Despite the grimness of the prognosis (how grim, for me specifically, is not real clear yet but it is Not Good), I am getting along, and only sometimes down.  I feel fine, I have lots to do, and people love me.  For now that’s working for me pretty well.  The secret of my success, or my motto so far: “meant to feel sorry for myself but didn’t get around to it.”

(Click the “RSS” button at the bottom of this web page if you want to get alerts in your e-mail when I add to this blog.  I think it should work on most e-mail set-ups…just follow the prompts.)

Sunday was a henna party. Here is my head (done by Arti and Meg):

Lately I keep facing this choice. Will today be a breast-cancer day or a regular day? Some days I don’t have appointments, feel all right, don’t do research or talk to other people in the cancer world, read novels, and get my “regular work” done. Other days I look things up online, let myself explore new Web sites that might hold useful information of one sort or another, read cancer-related books (see “bibliotherapy: sick”), talk to other people facing what I’m facing, make or go to appointments, and/or feel bad. And I am never quite sure which day I’m going to have, at least on a non-appointment day. Sometimes I get sucked in, sometimes I resist, other times I tell myself it’s useful and helpful to just go with the flow and follow my impulses as to what the spend my time on. I guess my goal is to prioritize the important breast-cancer stuff while not becoming a full-time obsessive breast-cancer junkie; and meanwhile, to get the “regular work” done on a reasonable schedule. All while not stressing out about either one.

Talking to others is useful. I don’t have an official in-person support group, because I haven’t felt the need of one. But instead I have breast-cancer friends I feel I can talk to, and sometimes whom I feel I can support. That is a good feeling, and one I don’t usually push away to another day.

Yesterday morning. My hair has been cut much shorter than usual (1/2″ in front, at its longest) but you really can’t tell much difference! I’ll have to buzz it to 1/4″ next week, so as to really look startling.

Good question. Given my reaction to blogging, nothing but something unusual and prejudice-shaking would bring me here. That something seems to be breast cancer, for the second time in my life, just before my 40th birthday. Though I have been sending out periodic e-mail updates to a large list of family and friends, there are some musings I haven’t wanted to deliver to peoples’ In boxes yet still thought some people would want to hear. Not sure yet what exactly I am up to, but capital letters are sure making me self-conscious.

So one thing I realized I’m feeling, overall, is that there are these two worlds–the world of the well and the world of the sick–and I slip from one to the other all the time. Maybe slip down into one from the other in a big way, too, with this scary diagnosis, and emerge later…next February?…back to the regular world again. Maybe the cycle is bigger–every 10 or 11 years?

Everything is chugging along in life and breast cancer is far behind me, making me an interesting and maybe more evolved person, but certainly not part of my personal day-to-day life, and then suddenly the ground opens up and I’m back in the hospital-doctor-surgery-Vicodin-recurrence percentages-chemotherapy drugs world with all the other scared sick people.

Here is where my reaction is kind of interesting. When I’m in the world of the sick, I feel relatively well and lucky, especially to have the partner I have and the family, friends, and community we both have holding us up. Not to mention having a curable disease, and being smart enough to learn what I want to learn to feel like a part of my own care. And finding good doctors who will talk to me and answer my (sometimes overly intellectual) questions, and perhaps even enjoy doing so. So it is somehow less complicated and less depressing to be in the world of the sick. Plus, priorities are pretty clear there.

Then I surface back into the world of the well where I am Greatly Impaired all of a sudden. Have I just had surgery and am on painkillers and have no energy? or am I just tired, distracted, worried, and wanting only to either Fix Things, Learn Some More, or read an escapist novel? Either way, I’m feeling Not Normal and being around normal people, living their life in the world of the well and not even being conscious of the world of the sick, really makes me feel pitiful. I feel like I don’t fit in at all anymore and have nothing to talk about–at least with people who don’t know what’s going on with me. And with the people who do know, sometimes I want to talk about it and sometimes I just want them to know, so we don’t have to talk about it.

This slipping back and forth is hard to handle. It’s also hard to explain why a trip to the oncologist is easier to deal with, for me, than an afternoon at the beach.