Behind

These are the thoughts I try not to have, but end up having more often than I would like...

A few nights ago, in the bathtub: "Where will I be in less than three weeks from now?" [It's now two weeks and one day until my surgery.]

Last night, at DH's colleague's house for dinner: "Will they say that it was just two weeks ago that they saw me, and how good I looked, how happy?"

In the car on the way to Costco: "I should make a list for Dude of people who should be at my memorial service, no matter what."

No one wants to read me say all this. But it is the case. Some of the time, I really don't have fear about the surgery. Other times, I have panic attacks, like on the bus last week, and I'd wished I had my Ativan but did not, so I did all I could not to have my nervous breakdown, right there, on the #8, right in Chinatown.

I look at music lyrics and quotes and lines of poetry like scriptures, to describe the fucked-up way all this is sacred. I'm not sure how to make anyone understand that.

Home

My parents just began their trek back to their home in Pennsylvania. They were staying with us these past two months to help out and be with the kids. Instead of crawling back into bed, I'm finding myself wide awake, feeling a simultaneous emptiness and relief by them going home.

I haven't really talked about them being here all that much on this blog; they kinda melted into everyday life. But I think that what kind of support, as I mentioned before, one has during cancer treatments plays a big role in the quality of life. As an example, last night I was snug as a bug in a rug when Dude sat beside me in bed, reading up on some of my breast cancer books. I felt warm that he was becoming informed about what we're going through, and even though I had a splitting headache, I managed to fall asleep as he rubbed my back while reading.

My parents, especially my mom, are understandably big worriers. My mom sometimes takes it to a whole new level all her own, where she talks herself into a chaotic frenzy; it's no surprise she has high blood pressure. So while she was cleaning and keeping care of the kids, she filled the air with, let's say, musicality and colour.

It's nice to have my house back to myself. That's honestly what I was looking forward to for some time. Of course, that means having the cleaning all to myself; the changing poop diapers all to myself; etc. But I miss having control over how my house is maintained, even though my mom always does an impeccable job. After all, she did raise me, and I got a lot of my anality for cleanliness from her. So my internal fight for the vacuum was an issue.

They want to come back right away. I want them to stay away for a little while. I want to reclaim my space and see how I'm able to live my life without my parents taking care of me. I want to be a grown-up for a bit again.

Having three generations under one roof is both wonderfully supportive and sometimes suffocating. At the moment, this very moment, I'm not sure which way to breathe.

In Need of Support...?

Even with all the people supporting me and sending me good vibes, cancer can be lonely sometimes. But in order to get out of the lowest low, cancer also needs to be liberating.

I'm trying to understand the whole concept of "support person." You don't have a support person in your life, until you get cancer. But shouldn't a partner, parent, friend, etc. always be a support person, no matter if you're sick or not? What needs to change about a person to elevate them to the status of support person, or to place that extra weight on them?

My husband has been defined as my support person, as one would naturally think he should be. My parents and in-laws also provide a huge amount of support by taking care of the kids. But really, I'm not sure how this scenario is different than it was six months ago, before I was diagnosed with cancer.

I think I've gotten used to the idea of Dude being the support person in the definition of him being here more, that he's with me and the kids more, spending time with us. But he's a busy person: breakfast meetings, lunch meetings, dinner meetings, press conferences, 8 PM coffee meetings, academic conferences, radio interviews, newspaper interviews, office hours. And when he's home, there are urgent emails and phone calls that he must attend to. This week he's in Philly for a conference. In December, he's in DC. I have to admit--it doesn't sit well with me. My immediate reaction is anger, bitterness, and feelings of abandonment. He gets to live his life, as usual. I have to stay home with my cancer.

I have to have my moment: I cry, think of all the ways he's betraying me by living his life, going about his business, paying more attention to the community and the university than to me. I think of the counselling sessions at the cancer agency, and for someone as brilliant as my husband is--why doesn't he get it?

But what's there to get? In the bathtub, I have my pity party. When I'm done, I see all the strands of snot flotting among flakes of skin and eye lashes. I allowed myself to shed the negative energy.

The day DH left for Philly, I had a really great day. I made myself get out of the house, exercise and do a lot of walking, write some poetry, and enjoy the sunshine. Yesterday was pretty good too. The weather has taken pity on me. It's not so bad to stay behind. It's actually pretty good.

But I still don't know what I'm supposed to think about this "support person" title. I'm not sure I like it. Dude is my husband, and when he really needs to be there, like when I'm getting chemo, he is. When he's not there in an everyday scenario, I do feel a little bad, like at night, when I'm sitting in bed and it's half empty. Or when I'm eating by myself at dinner. Or when I'm putting the kids to bed by myself, first Mylo, then Chloe, who asks where Daddy is. In addition to the word "meeting," they know the word for "conference" now.

I'm back to why this is different from life before cancer. It's not. Should it be any different? What needs to change? That's what I'm struggling with.

DH and I are similar--that's why we're together, is it not? We both find it hard to say "no" because we believe in the greater good. So when I'm not feeling so pathetically lonely and abandoned, I'm really proud of all that he does, that he's so committed and passionate. But yeah, sometimes, cancer is a party of one--and the challenge then is to see the greater good, in anything. The upside is the feeling that comes from re-learning how to be independent in the hardest of times.

Hm, how do I end on an uplifting note? I'm taking applications for substitute support people to come read bedtime stories to my kids, sit in bed and rub my back until I fall asleep, and cook me dinner in your underwear. Any takers?

Sick

Chloe's sick. So I should stay away from her. This is impossible--and not something I want to do anyway. At six this morning, I heard a little whimper downstairs, and it went straight to my gut. Even in the deepest sleep, I can feel my kids needing something, no matter how quiet they are. Of course, no one else heard little Chloe crying, so I went downstairs to see what was the matter. She had to go pee but was afraid in the dark. So I helped her, and she coughed all over me, and I didn't think to turn away. Then I put her back in bed and gave her a kiss.

Step 1: Remember that I have virtually no immune system.
Step 2: Stay away from crowds and sick people, including my own kids.

I think I'm fucked. I can't remember the first step, and I can't be bothered with the second one. This is too hard.

Last night, I had a bad moment. Actually, last night was good. People were dropping by to pick up their race shirts, and my friend Emilie came to hang out. But when everyone left, and I was in bed, I felt like crap. Not because of all the company, but just because of the chemo--and because of the horrific realization that I'm only on cycle 3 out of 8. Then I panicked: how the hell am I going to make it through EIGHT of these cycles? EIGHT???? I know people have done it, but it seems like a long-ass road ahead.

Sometimes, I really hate realizations.

Waiting Game

I've gotten a number of emails from friends wondering what the latest is....which is, I'm waiting. The first clear open appointment to receive chemo is August 23rd. My trial nurse, rightfully so, thinks that's too long to wait. So I'm put on a waiting list everyday, which means that any day now, I will get the call to go in and start treatment. She said that last Friday and this Tuesday looked like the best days (Monday, tomorrow, is a holiday here), but I still haven't gotten a call for any day. We're keeping our fingers crossed.

I had another core biopsy on Thursday, so that the cancer agency could have a baseline sample before the chemo starts. This procedure seemed more brutal than the core biopsy I had at Women's Hospital. Two differences I noticed: a scalpel was used to cut into my skin to insert the "needle," which actually looked as big as a screwdriver to me. I didn't notice a scalpel being used the last time, and the needle used last time actually looked like a needle (a long one). I'm not sure if I just didn't notice this the last time, or if the procedure was really different because they need a bigger sample from the tumor. In any case, there was also a lot more blood and tenderness this time around. My friend Emily went with me since DH had to go to a press conference. Thankfully, her dad is a vet [the kind that doctors animals, not the kind that was in a war], so she was pretty much unfazed (or at least, she appeared to be).

I'm also getting set to see a naturopath as part of a complementary treatment to the chemo. I'm not sure if this is allowed since I'm on a trial, but I will call and ask the nurse tomorrow. My friend Shirley helped me with this, as her brother is a well respected naturopath. I'm very excited, and hope that this is all kosher with the trial. I want to do everything I can to keep my energy at a reasonable level while on chemo, as well as maintain my health as best as possible.

"Order + No Order = Still No Order"

I woke up still sobbing from my dream. In the dream I was playing a simple game of softball with friends----DH, people from CCHSBC, some other professors types, friends from college. They were playing kind of half-assed. I wasn't sure what my position was, or when it was my turn to pitch because people were just moving around. When I asked some people if they knew what they were supposed to do, they said yes and told me what their job was. Others said, who cares? We're just having fun. I got fed up and started shouting, "You can't have it like this! You kinda have order but don't. Order plus no order is still no order! It's mathematical!" And I ran from the game.

I stood on top of a hill overlooking water. I saw my friend Mae talking with some others: my cousin Teresa whom I hadn't seen in a while, people from grad school. She saw me, but I didn't want to see her. I just started crying into my hands, feeling excluded and alone. Mae started walking toward me, and that's when I woke up sobbing, with my shirt soaked through with sweat.

In real life on Friday, I called my friend Mae but she wasn't there, so I called Irene. I told her how useless I've been feeling lately. I have several projects that I'm in the middle of and trying to finish, but during the day I just feel like sleeping. I haven't been sleeping much during the night (except for now, because doc gave me some pills), so during the day, I'm pretty mopey and tired. Irene said it must be hard for a Type A gal like myself to come to terms with the huge potential that for a chunk of time, I have to chill out and rest. I'm the ultimate multitasker and juggle all sorts of stuff. Plus, I take care of my family, so to have to accept someone having to take care of me is a huge challenge.

The dream is an obvious one in which I'm freaking out from having to lose control. It is true--half-assed order, to me, is still no order.

Last night, my friend Jamie made a surprise visit from Seattle. I was one of the MC's at Rhizome Cafe's first anniversary party, and while I was at the mic, Jamie walked in the door, so it was so nice to see him! I really need to see a friend now! He and I talked for a while about my treatment options. He's lost several people in his family to various types of cancer, so he knows a little about the lingo and world of the big C.

I'm worried about the trial treatment. Basically, I have to live six more months with the cancer before surgery since I start off with chemo. The question is, why not do the surgery first? Why not try to cut out that shit before doing chemo, like they usually do? One of the reasons the doc said was because this way, I get the really good chemo, the extra medicine, because it's part of the trial. She also said that this way, any microinvasion would be targeted and hopefully got rid of. So I need to do chemo first so they can measure the size of the cancer as I'm getting the chemo (one of the main things about the trial--a trial isn't the standard treatment; a trial is like an experiment in other words--they're researching something, and I'm part of the research, while receiving treatment).

But it's the lymph node that's most worrisome. Even though my lymph node biopsy came back negative, it's still obviously swollen with something and they want to take it out. I wish they would take it out now and test it rather than wait six months. If the lymph node has cancer, that's bad--that means that it's trying to spread to the rest of my body. So if one of my lymph nodes shows possible invasion now, can they please take that motherfucker out???

I don't like feeling helpless. Jamie asked me if I have any instinct about which route to go (chemo first or surgery first), and I don't. I feel like here, I don't have a preference (other than taking the node out asap), nor do I feel sufficiently informed to have an opinion, so I'm just leaving it to the experts. But of course, I don't feel right about that, especially since I kinda feel all guinea piggish.

No Order.

4 hours and counting. . .

til I eat the apple of knowledge at my first oncologist appointment. I've had the weebles in my stomach ever since I woke up. Last night's sleep wasn't great. I took two of those tiny Atavin pills and felt whoozy, but I couldn't actually fall asleep. So I stayed in that half-state of sleep that sucks--where one part of your brain wants to shut 'er down for the night, but the other part that's assigned to freaking out is freaking out. Sucked.

My kid Mylo is feeling my elbow right now. He has this thing where he likes to feel elbows when the arm is straight and the skin is loose. It's kinda freaky, but it makes him feel better. He has a big grin on his face.

Fucking cancer. Whatever it is, it will die!!!