Getting to me

Michael has just completed his first week of chemo and radiation. He met with his oncologist yesterday morning after radiation to have his PICC line flushed and the dressing changed, to have blood drawn, and to have his pump refilled with meds. His bloodwork looked good (meaning his platelet count has not been negatively impacted by the chemo), and all in all he seesm to be handling the treatment well. It is almost surreal that he is undergoing chemo and radiation and yet, for the most part, still carrying on with normal activity. You think of someone with cancer, someone undergoing chemo, and you picture someone pretty incapacitated. At least I did before this. And I know that there are forms of cancer that require treatment that does incapacitate the person. So I'm very thankful that Michael is doing so well and is still able-bodied.

So why am I feeling down today? It's one of those days where I feel like if I sit still with my thoughts for more than a few minutes, I'm going to have a mini-breakdown (and I'm trying really hard not to do that).

Sometimes I still can't believe that this is happening, that my husband has cancer. And then I want to kick myself for letting myself get into a funk over it, because really, everything is going pretty smoothly, the outlook is good, etc., etc. But still. And I'm totally stressed out about money. I mean, we're good now. But he's an attorney, and the bottom line for attorneys is that they are expected to put in their billable hours. And the fact of the matter is that he's falling behind now because he's having to miss a lot of work to go in every morning for radiation plus his weekly visits with the oncologist. Then there's his surgery down the line, and there's no telling how laid up - or for how long - he'll be from that. He works for a great firm, and they've been so supportive through the whole ordeal when Finn was born (which required Michael to lose a lot of work time), and now this, and I think M and I are both assuming at this point that no matter how compassionate the partners are, they have their bottom line too. Business is business. So it's possible - likely, in fact - that he'll have to take a cut in pay, and I'm freaking out over that inside.

Blah. I'm sure he doesn't even want me blogging about that aspect of things. That's what's on my mind right now, though.

Then there's the whole issue with our downstairs which remains torn up and unresolved. The contractors submitted an estimate to repair, replace, etc., and now we're waiting . . . and waiting . . . and waiting . . . for the insurance company to give the go ahead. In the meantime, the downstairs is an ugly mess, and frankly, I'm sick to death of it.

Sigh. Maybe it's PMS getting to me.

I'd Like You to Meet the New Love of My Life

Me and the old guy, we had a good run. But as we all know, most relationships don't last forever. As for us? Things got stale. He eventually turned into such a complainer! It was as if he would never shut up. All the issues that come with age, they came. Still, I stuck with him for probably longer than I should have, and towards the end, he was really showing his age. It was almost embarassing (and I don't consider myself a shallow person). But loyalty and devotion only get a person so far. Then this young thing came along, and I couldn't resist.

Let me introduce you to:














Harold.


Yup, Harold - you heard me right. That's what I've named him, and I can tell already that he and I are going to get nice and cozy over the next few years.

You're probably laughing. I'm serious, though. You have to understand how huge laundry is to me. I am washing not only clothes for 8 people, but towels and sheets for 8 people too, as well as a myriad of security and receiving blankets, spit-up cloths, and cloth diapers. I do an average of 2 - 3 loads a day - sometimes as many as 6 - 8 loads in one day. That's an average of 15 - 25 loads a week! And honestly, I enjoy doing laundry. There is something especially satisfying to empty out a hamper. There is something gratifying about a warm, fresh-smelling stack of folded towels. Out of all the household chores, laundry is probably one that I mind the least, which is a good thing since it's such a big part of my day.

Losing It

For the most part, I've been going along lately, coping pretty well with everything, especially this latest pothole. But then, out of the blue, I find myself completely losing it over something unrelated. Example:

Lilah has this . . . errr, growth on her behind. So I recently took her to the ped, who referred us to a specialist. Another specialist. I swear, my life is full of specialists these days. Anyway, so I got the official referral/authorization from our insurance company in the mail a couple days ago. I called the specialist's office this afternoon to schedule an appointment for Lilah.

The receptionist proceeds to ask me at least 93 questions - my name, date of birth, address, employer, husband's name, date of birth, employer, blah blah blah . . . I finally stopped her and said, "Why do I have to give you all this information on the phone? I just want to make an appointment." She tells me that she can't make an appointment until she gets all this information from me. Seriously? Then she asks me for our insurance information: company, billing address, member number, subscriber ID, yada yada yada. I stopped her again and said, "First of all, don't you have all that information in front of you? The authorization was faxed to you by our pediatrician. Secondly, aren't you just going to ask me for my insurance card when I get there so you can make a photocopy of it? It has all that information on it, so why am I giving it to you on the phone?" I admit I was getting pretty bitchy by this time, and she was getting good and bitchy right back. She said she needed my insurance information to check for eligibility. WTF??? I told her that I had a copy of the authorization from our insurance co. right in front of me as well as a note from my ped's office saying it had been faxed to their office. That's proof of eligibility, isn't it? We went round and round, and she put me on hold at least 8 times - I'm not kidding. Finally, at one point she got back on the line and I came unglued. I started crying! And ranting to her, "I have a baby with Down syndrome who sees all kinds of doctors, and I have a husband with cancer who sees all kinds of doctors, and never in my life have I been made to jump through so many hoops just to get a FREAKING APPOINTMENT!!" She put me on hold again and then transferred me to someone else. I asked the new person if she was the office manager because I really wanted to talk to the office manager, and she said no, the office manager wasn't in, but she would be happy to transfer me to her voice mail if I wanted. I told her, "I just want to make an appointment for my daughter, that's all!" "Ma'am, I'm trying to help you here . . ." Ugh.

I swear, no exaggerating, this was a freaking TWENTY-MINUTE phone call - just to get an appointment!

When I got off the phone, finally, I shut myself in the bathroom and had a good cry.

And now I'm asking myself: was that really just over the phone call - which, granted, was extremely frustrating! - or was it a buildup of everything else?

Why Do I Blog?

This is something I've been analyzing for some time, and there really are no easy answers.

I've been keeping a journal since I was a preadolescent. It started out, of course, as a handwritten project, and I would write my deepest, darkest secrets in it. And being that I had a pretty effed-up, unhappy childhood (I know, I know . . . boo hoo), there was plenty of deep, dark stuff to write about. I quickly discovered how absolutely cathartic it is to put feelings and experiences to paper, and I've been hooked ever since. Sadly, my handwritten journals from childhood no longer exist. There was a time in my early adulthood when I panicked about the possibility of somebody actually finding and reading what I wrote (which is hysterically funny when you look at how public I make all my rantings and ravings nowadays), so on impulse, I burned everything one afternoon. Up in smoke, all gone. It makes me sad now, because I wish I could go back and read what I used to write about.

Based on that fear that someone would find me out, I stopped journaling for quite a while. Several years later, I got my first home computer, which happened to coincide with the slow, painful implosion of my first marriage, and I began journaling again - this time on the computer, using password protect. Later, my marriage came to a very ugly end, and as part of that whole scene, my husband-at-the-time took my computer (as well as lots of other stuff) when he was issued an order by the court to remove himself from our house so that I and our son could take possession. He took my computer and jacked with it. Shortly after the final break-up, he died of a drug overdose, and my computer, as well as several other items, were taken by the police and kept for a number of weeks during the investigation into his death. By the time I got my computer back, it was useless. Whatever my ex-husband had done to it had rendered it unusable, and I couldn't access my journal.

So, another of my journals gone for good.

Over the next several years, during the course of the first few years of my second/current marriage, I kept a few pregnancy journals. I think I actually still have a journal somewhere on the desktop computer downstairs which is password protected, but damn if I remember what the password is.

Then, a couple years ago, I discovered blogging. Journaling with an audience - now there's a concept! And it's funny how desperately I used to want to keep all my thoughts and feelings that I journaled about a secret. Now I love the feedback I get. I look forward to getting comments on my postings. I spend more time than I care to admit searching out sites and registering my blogs in order to build readership. What's up with that? I'm sure there is something completely and utterly exhibitionistic about it. I'm sure any psychologist worth his or her salt would have a field day with it. But there it is.

And honestly? I feel wierd saying this, but I believe that on some level my blogging has made Michael and me closer because it's allowed him to see into my head and heart in a way he never did before he started reading my "journals." I know that he's not always thrilled about some of the things I write about, but he's pretty tolerant for the most part, and even supportive on occasion.

The truth is, though, that I do compartmentalize my blogging. I have this one, in which I write about all the day-to-day crap - sometimes serious, sometimes humorous. It's a fun little outlet. My other blog, Finnian's Journey, started out as just a way to keep updates about Finn's progress in a central place for friends and family because after he was born and had surgery and was in the NICU, I was just too much of an emotional wreck to deal with phone calls and emails. At that time, I had no clue that there was a whole Down syndrome blogging community. I had no idea that my blog would come to mean so much. And now, 7+ months later, I can't let it go. I love the people it's introduced me to, and I love how theraputic it still is for me to write about the experience of being a parent to a child with Ds. Then I have a private blog, one which nobody but me has access to, where I go to rant about stuff that's just not fit for public consumption. Another form of therapy for me: an unloading, a purging, a getting off my chest sort of thing. I can say anything I want there without worrying about offending someone. I actually don't write there very often, but when I do, I always feel better. Then, of course, when Michael was recently diagnosed with cancer, I started a separate blog about that road. It's also private, but someday, when Michael is well again and we come out the other side of this, I will share it with him if he wants to read it. Not until then, because I don't want to censor myself as I chronicle this experience.

So there you have it - that's why I blog. I guess.

The Kids

A lot of people have been asking me how the kids are handling all this stuff going on with Michael. The truth? Very well. In fact, they hardly seem fazed at all. I'd like to chalk it up to our great parenting skills and the belief that we presented the whole thing to them in a non-scary manner, but in truth I think it's just that it doesn't mean much to them. I think they're too young to understand how serious Daddy's illness is. To them, there are many sicknesses, including a cold and the flu, and to them, I suspect that what Daddy has is on par with one of those. Even Kevin, who's 12, seems to be taking the whole thing pretty much in stride; he's the only one old enough to have some inkling of the gravity of cancer, but even to him I think it's mostly abstract. The younger kids seem to be a little intrigued with the thing sticking out of Daddy's arm and the pump with the medicine in it, but really, to them, Daddy is still Daddy - he doesn't seem sick, so they're all just pretty much carrying on as usual. And I'm very glad of this. I really don't want them to be all scared and upset.

That said, I am very interested to see what Joey's February school journal will reveal. Every day in class the kids write in a journal and at the beginning of a new month, they bring home their journal from the previous month. Joey's journal is a kick to read, and it usually reveals something going on in his little head and heart that we weren't completely aware of, so I will not at all be surprised to see a crayon drawing of Daddy with a tube in his arm and Joey's thoughts on the matter.

I suspect that when Michael has surgery (which is projected to take place at the end of June), that's when the kids might unravel a bit over this.

Pet Peeves

And now, in a departure from all things cancer, Down syndrome, or even kids and family, allow me to bitch.

Do you know why I hate grocery shopping? Because the world is so full of rude people. It starts before I even enter the store. Some a-hole, hell bent on getting a primo parking spot, is so focused on her goal that anyone making their way across the parking lot on foot does so at great risk. And after this close to being run down, I'm throwing my arms up and gesturing wildly, yelling "Seriously?!? Seriously!?!?" And she has the cajones to shoot me dirty looks!

Then I enter the store and right away I'm confronted with idiocy and a complete absence of common sense in my fellow shoppers. I firmly believe that the rules of the road should apply in grocery stores:

~ Keep to your side of the aisle!
~ Don't leave your freaking cart in the middle of the aisle, blocking it so that I have no choice but to say "Excuse me," five times before I conclude that you're either (a) hard of hearing, or (b) ignoring me, which then leaves me no choice but to move your damn cart out of the way myself. Then you have the nerve to give me a surprised look. What the eff?
~ When leaving an aisle, remember that there is cross-traffic; proceed with caution! Don't just come careening out like a bat out of hell.
~ Just as it's rude and obnoxious to cut somebody off with your car and then drive very slowly in front of them, so too is it just as rude and obnoxious to do the same with your grocery cart.
~ Don't cut me off when I know you saw me heading for that checkout line first. I know you pretend you didn't see me, but you saw me all the same, and now you're on my shit list.

Come on, people! A little common sense! A little courtesy! Together, we can make everyone's shopping experience a little more pleasant.

The weekend in review

It feels like this was a lost weekend. Michael spent a good part of the weekend working (from home, but working nonetheless; working from home means he's shut away downstairs, so he may as well not be here, for the most part). It's almost surreal in a way. Here he is, hooked up to this little machine that's pumping chemo meds into him, and he's carrying on pretty much business as usual. Still has deadlines to meet for work, and trying to make up for a lot of time lost to doctors' appointments. As for me, yesterday was a bust. I swear, aside from sitting down to nurse the baby a number of times, I didn't actually sit down to relax until 10:00+ last night. Kevin currently tutors on the weekends, and one of the kids he tutors lives quite a ways away, so I took him over there yesterday, dropped him off, and ran some errands while he was tutoring. Then I picked him up and we grabbed a quick lunch. Headed home and - I kid you not - I spent a solid hour and a half picking up the house, as it seriously looked like a riot had taken place in pretty much every room (this is what happens when you leave Daddy in charge . . .). I don't even know where the rest of the day went, I just know it was a blur.

Today, Michael was up bright and early and back to work in the office downstairs (the downstairs, which, by the way, is still in shambles - worse now, because the contractors came and removed all the old carpet and linoleum; I don't even know when everything is going to be repaired and put back together). I did manage to get out and walk for 40 minutes - by myself! - and it was good to get out in the fresh air and clear my head a bit. Aside from that, I've been holed up in the house doing laundry and not much else. It's looking like rain again, so the kids have been cooped up in the house as well (and driving me nuts). At this moment, Michael is out ordering a new washing machine - yayy! Our current washing machine is 12 years old - probably double that with all the laundry I do. It's been on its last leg for about a year. So now it's finally time for a new one. How sad that I'm excited about a new washing machine.

So tomorrow morning, first thing, Michael has his first radiation treatment. Sometimes it's still hard to believe this is happening.