Friday, January 30, 2009

Things NOT to do while wearing a mask and gloves

When out in public recently, I've been experimenting with how far I can go while wearing a mask and gloves. People, especially kids, stare. Not a little passing stare, but eyes locked, head turning as they walk away. I can't really fault the kids, with their natural curiosity and ability to ask the questions us adults are too scared to ask anymore. "Mommy, why does that man have a mask on?" They stare, they point, but they don't judge; they're just curious. I haven't spoken to any of them or told them that I'm sick, I just let their parents take a cursory glance and try to make up their own reasons for why I have on a surgical mask and non-latex gloves.
It's the adults that make me feel like a pariah and draw out the self-contentiousness from my soul. Walking around a store while full grown adults stare at me, or purposefully avoid coming near me is disturbing. If they want to know what's wrong, I really don't mind explaining. I'll talk their ear off about it. It's not a happy story, which upsets people, even people who don't know me. But I'll tell them. It's the ones who don't ask but judge that get under my skin. The ones who look, and avoid me like I have the plague. To be fair, I am doing the same thing, just with some equipment and not acting so obvious about it. I feel great when I am somewhere, and there is someone there who doesn't treat me any different than someone without a mask. But that hasn't happened too much. Fortunately for me the mask and gloves come off on Feb. 6th. One week.

So I've compiled a list of things that I really really really wish I could bring myself to do while in a store while I still have the mask and gloves. I'm not a troublemaker with strangers by nature (its different with folks I know, especially those I think I can get away with stuff), but maybe in the next week I'll gather some courage and try to do one or two of these.

1. Cough violently, making hacking, gross sounds. Kind of what I did during the pneumonia days. This will get the attention of anyone around me, and will guarantee an entire section of restaurant for Ti and myself.

2. When kids stare at me, walk up to them and tell them that it's their fault I have to wear a mask. It's cruel and mean. And I'll catch hell from their parents. This one I probably won't do.

3. Walk up to adults that stare, pull down the mask and sneeze. I mean, what would you do if you were in a store and the guy in the mask walked up next to you and sneezed. People do it all the time who are actually sick, and don't have the hardware to prove it, it may be a little fun. I'd only do this to people who glare at me for more than 5 seconds or so.

If anyone has any more ideas for fun things to do while wearing a mask and gloves out in public, let me know. This is all I can really think of.

I'll say it again if I hadn't said it before: Since the cancer hasn't finished me off yet, the wedding planning might. I got into a fight with my mother today about the planning. About things I don't want to care about but because I seem to have lost control over the wedding that Ti and I are paying for, so I tend to fly off the handle about these things really, extremely easy. All of my patience is needed elsewhere, and I don't have the strength to deal with the rest of my life and fighting with people other than Ti about the wedding. I'm getting better, I'm just not there yet.

So tonight, instead of Ti and I having an enjoyable evening after her returning from a week away on a work trip, we get to make lots of phone calls and try to deal with what happened this afternoon. I feel horrible because of the fight, and those feelings melt from my anger into the depression that has been sitting on the edges for the past few weeks. It's not as bad as it sounds, but life handed me a lemon today, and damn, I misplaced the juicer.

I'll talk to you all later. Tomorrow things will be better. They sure as hell better not get any worse.

Thursday, January 29, 2009

How did we get here?

I just spent the last 20 minutes skimming my past posts. All of them. It brings back memories of the anxiety I had, and the processes I had to go through prior to going to the hospital for the transplant. Memories of the 21 days at B&W where they almost killed me only to bring me back "better than before". And memories of just getting home and how sick and weak I was. There are many holes I haven't filled in the story, many details you'd rather not read about or I'd rather not write about. In some cases it's a little bit of both. But it's been difficult.
I feel like this part of the story is coming to an end, and in many ways, next Wednesday will mark the end of this portion of my recovery. I am excited but also a little scared. I want to go out and eat whatever I want (within reason, I still have to be careful), go wherever I want and do whatever I feel like doing. But the past 6 months, especially the past few that I've been home, have made me a little timid. Of what exactly, I'm not sure. I feel safe and secure inside the condo, but scared of resuming my life again. I want to get back to work, there's much to do. I want to go back to doing what I used to do on the weekends. I want to spend time with the people in my life I haven't seen in so long. But I don't want to do any of that as well.

Monday we cross another bridge: a meeting with the radiation oncologist at B&W. Then we will meet and decide my fate and discuss whether or not I need to be zapped. I'm a little nervous about that, but hey, who wouldn't be. In this regard I am tasting freedom for the first time in months only to be brought back down to "cancer patient" status because I might need rads. Since I love analogies, it's like being handed a check for a million dollars while being kicked in the nuts repeatedly by a woman in spiky high heals. Maybe not as painful, but an emotional yo-yo for sure. Yay, ouch, Yay, ouch, Yay, ouch.

I also have come to a conclusion that I need to start going to bed before 3 am. I only recently started getting this bad, and I have a feeling that in a few weeks it will come back to haunt me when I get the all clear to go back to work. But we'll see.

Good night all. Sweet dreams and all that crap.

- B

Saturday, January 24, 2009

My future wife in New England

Thursday, January 22, 2009

Am I human, or am I dancer?

Besides the fact that sometimes I'm not all there anyway, being home as much as I have been and watching as much TV as possible - pretty much if I'm awake, the TV is on - I've started noticing that my brain has ADD, in a way. Ti thinks I'm weird, and it's just getting worse. We'll be watching TV, or going to bed, or in the car, and the most random thoughts pop into my head and what's worse, some of it comes out of my mouth. The only thing I can think of is that I've reached my absorption level of pop culture and the extra seeps out.

We had Thai food tonight. It made me happy to have something exotic. It wasn't a burrito, but I'll settle for Thai food.

Anyway, time to get ready for bed.

Do you ever wonder how many licks it takes to get to the center of a Tootsie Roll Tootsie Pop?

Monday, January 19, 2009

Uh-Oh Spaghetti-O's

I haven't posted in almost a week. Almost. Mostly because I'm really running out of ideas. I'm not going to harp about tomorrow and how historic and important it is, I'll leave that to all of the major media (and not so major) outlets, as well as all of the websites, blogs, email messages sent out and the Official Barack Obama Inauguration Collectible Coin Sets now available at Target and Wal-Mart. To summarize the last sentence, in case it didn't make sense, tomorrow is an important day, I'm just not going to discuss it or give my two cents.

*Warning - explicit material below*

At this moment I'm a little agitated about wedding stuff, who wouldn't be? At this point, instead of dealing with all of the bullshit (can I say that on the web?) that comes with the wedding, because I really don't need it right now, and neither does Ti, I'd be happy eloping. However, I have to consider the feelings of everyone I know and how upset or off-put they would be if we got married and didn't include them. But every time a problem comes up and things start to get a little tense, I'm that much closer to saying "Fuck it" and logging onto Orbitz or Travelocity to find some far off little tropical island where we can get married.

Moving on because even blogging about the wedding is starting to counteract the ativan I took to calm me down the first time I got agitated about the wedding tonight.

My onc called at the end of last week. We're making an appointment with a radiation oncologist. During the last meeting the R word was brought up, and I have a feeling that I will be getting some soon. The R being radiation. We haven't discussed details, but how f'ing fair is this? (Sorry about my profanity. I seem to have lost that filter tonight.) The first time it was discussed, back in the late summer, it was rads for a month. I hope not, because they also said every day for a month. Ugh, and so it continues.

I wish this could have been a happy, good news, my life is peachy post. It just isn't. I need to vent, I need an outlet, and none of my friends, as much as they think they want to, don't deserve to have that load dumped on them. It's heavy and complicated and those of you who understand (ie suffer through this too) have your own burden to carry.

On the bright side, I am getting better, I am starting to get to the point where I can integrate myself slowly back into society. This is just the long, slow part between now and where I am all better and life is back to where it was before this started. The countdown to Feb. has begun.

- B

Wednesday, January 14, 2009

Next stop, pizza!

I just ate lunch. It was good. Real good. It was from Bertuccis. Who's got two thumbs and some of his restrictions lifted today? This guy, right here. I can eat out in non-crowded restaurants, I can go into non-crowded stores, I can watch movies in an non-crowded theater (see the pattern). If there are groups of people somewhere I want to go, then I'm s.o.l. and will have to find somewhere else to go and something else to entertain me, but I'm starting to see the light at the end of the tunnel.

23 more days and I don't have to wear a mask and gloves in public. 23. Three weeks and 2 days. Friday, Feb 6th is the target day. On the 7th we burn all of the extra masks and gloves. On the 8th we go to CVS realizing we (I) shouldn't have done that and we need to buy some to keep around.

One more milestone reached. 23 days to go until the next one.

We went to BJ's today as well, where I walked around pushing the cart for 45 minutes. We bought a few things, but the important thing was that I was in a store. Yeah, I had to wear my mask and gloves, yeah people were staring and walking fast away from us, but whatever. I was out of the condo for a little bit. More later this week hopefully.


Monday, January 12, 2009

What did we learn on the show tonight Craig?

I'm tired. Sleeping doesn't help. I've tried it, and no matter how much sleep I get, I'm still tired when I get up. Ti's tired too. Maybe it's the bed. Maybe it's yet another problem with the condo. I would try coffee, but I've cut caffeine out of my diet for the time being, because every cup of coffee or caffeinated soda I drink counts as a -1 drink for the day. Don't ask, it has to do with my liquid intake. Pretty much for every beverage I drink that has caffeine, I have to drink at least that much water to "cancel" out that amount. I'm supposed to drink 2 liters as it is (which doesn't sound like a lot, but you try to drink 2 liters of Gatorade during the day). I really don't want to add a cup of coffee and another cup of water to the total.

It's getting cold out. I'm grateful I don't have to go to work right now. I feel bad that Ti has to brave the elements in the morning, but there isn't anything I can do to keep her warm. Eventually I will be back to the grind and will have my commute back. But not yet.

American Idol is on tomorrow. Can you feel the excitement? Nah, me either. I'm going to search the guide for more bad reality tv now. I'll talk to everyone later.

Friday, January 9, 2009

Tomorrow's just your future yesterday

I haven't posted in a few days. It's because I've gotten into a routine. I get up in the morning, eat, watch TV, play on the computer, etc. It doesn't matter what day of the week it is. Except for what is on TV at night. Some nights Ti and I watch live TV, some nights we watch stuff the TiVo recorded for us. Then I go to bed sometime after midnight, because, let's face it, I don't have to be up that early in the morning right now. And yes, in a way, I am rubbing it in a little bit. But that's about all I got. The rest of my life right now is pretty pedestrian by any standards. The only excitement I get is when mail comes that I wasn't expecting. Mail. Whoo-hoo!
Although, I did get my chair-cycle thingy today. It's a set of pedals with a tension knob (so I can make it harder) that I use while sitting down. It's not a great deal of exercise, but it gets my legs moving when it's 25 degrees with a -2 wind chill outside. And I can do it while I watch TV without any problems, just like when I was going to the gym. I can also put it onto a table and use it with my arms, but I don't see that happening. My plan is to use it for about 30 - 45 minutes a day. Not much tension at first, but build myself up over time. Keep the knees and hips moving so when I can venture out into humanity, I won't be walking funny.

So here is a list of the top bad habits I've managed to get because of this damned disease:

1. Junk food. We have 3000 bags of Doritos here. Many I've gotten for Christmas, some were here before, some came after. I didn't eat a lot of junk food prior to treatment, now I'll have to ween myself off of it soon.

2. Irregular sleep patterns. It's not just staying up late and sleeping in. That would be regular. No, I sleep when I feel like it and get up when I want to. Naps, going to bed at 3 am, waking up at noon. Sounds great and all, but it does kind of waste the day. Not that my days have much to offer right now, but eventually 6:30 will be calling and I'll have to be in bed before midnight. Speaking of which. . .

3. Watching The Late Late Show with Craig Ferguson. This was a latecomer to the party, but Ti and I started watching this show. Live(ish). And it starts at 12:37 am. Which means we weren't going to bed until at least 2 am. Fine if you don't have work in the morning, but we were doing it during the week. Since Ti's gone back to work we no longer watch the show at it's 12:37 timeslot, but do TiVo it to watch it later.

4. Lack of major physical activity. This I can't be blamed too much for because a.) most of my muscles were shrinking by the time I left the hospital and b.) I had no energy for the first month I was home to do anything, let alone exercise. It also doesn't help that walking to the bedroom to the bathroom, kitchen or living room moves me all of 20 feet from the bed. Lucky for me that taking out the trash or getting the mail involves some stairs, or I'd have to retrain my legs. It also doesn't help that it's now freezing outside, and if I were to be out there for any significant amount of time, I'm sure the fluid in my lungs would freeze. Hmm. . . pneunomiasicles.

5. Not wanting to shave. Since August, I haven't had hair to speak of anywhere on my person. Now it's growing back with a vengence, and in places I hadn't had hair before. It's also growing very fast. I went almost 5 months without shaving, not that I was doing much before August either, but now I should be shaving 4 (maybe more) times a week. And I don't want to.

Eh, enough for now. I have to go gulp down a liter of water and play my Wii.

Monday, January 5, 2009

So. . . yeah, um. . .

It's Monday. In my former, pre-cancer life, I hated Mondays. Not that I don't like my job, which I do, but getting out of bed on a Monday is unlike getting out of bed on any other day of the week. Unfortunately, even though I am not working at the moment, I still have problems getting out of bed on Mondays. And I don't have a reason to get out of bed to drive me up and into the shower. Well, there are the reasons of eating, taking my meds and showering, but honestly, in the morning, when one is struggling with either going back to sleep or getting out of bed, you don't consider the minor inconveniences like food not being kept in the bedroom to get up. Now there are those mornings when I really have to use the bathroom, and then I usually get up, but I've started to reconsider getting back under the covers. The reality of the situation, is I spend 90% of my day within a 15 foot radius. My chair is on the opposite side of the wall from my side of the bed. If I could lean back about 10 inches in my chair, I could probably rest my head on my pillows.
So moving on from sleeping and how small the condo is. . .

The Wii kicked my ass today. I got my Wii Age down to 33, but I'm sure it'll go back up tomorrow. I played about 10 games of Tennis, which I think I split with the computer. Not that it beat me, I kept playing around and trying to figure out how to put spin on the ball and ended up knocking it out of bounds. Enough to lose a match I was up 40-0. But I started to get the hang of it and did pretty well, I think. Then I played a few other games and wore myself out. I was even sweating and breathing a little heavy. Could it be that somehow, in some mystical fashion, they combined exercise and video games in a non Dance Dance Revolution format? Yeah, yeah, I knew the Wii would do this. And as much as Ti probably won't admit it, she's happy I have it to get my ass out of the chair for an hour or two a day. Not that I can feel it or that it's making a huge difference physically, I can start to feel my energy and stamina coming back slowly. Breathing is becoming less of an issue but is still problematic.

My hair is growing back. Much thicker and faster in some places than others at the moment. The top of my head is still trying to catch up to the sides of my head, and the hair around my mouth is growing circles around the rest of my facial hair. It's also all coming in black. Anywhere I didn't have hair two months ago that used to now has it, and it's all black. This is very disturbing to a former redhead.

Well, that's all for now. A little long for a post I really didn't even intend to write.

Stay classy Earth.

Saturday, January 3, 2009

Yum Yum

I have a few conundrums to figure out in the next few days. First, should I continue to watch the Food Network, even though I won't be able to eat 90% of everything I see on TV? As I type I am watching a show on deli's and now I really, really want a Reuben sandwich. Hmm sauerkraut. . .
Before this show there was an Iron Chef America, and it didn't really make me hungry at all, even though the food looked great. What to do, what to do. It'll be another 11 days before we go back to Dana Farber where I have a chance (not guaranteed) to eat something from outside the house - not counting Christmas dinner. Am I just torturing myself or is this entertainment for me? I'm leaning towards entertainment, but some shows make me want to eat what I see on them. So torn.
My next problem is what to do for Ti's birthday. Once again, my illness is causing us to not be able to do something really special to celebrate, which makes me feel like I'm adding further insult to injury. She's done so much for me in the past 18 months, and during this special time, I would love to start to make the time up to her. There are a few things I can do, but due to my medical limitations, there isn't much we will be able to do, like go out to a restaurant to have a nice dinner. A bigger problem, but we'll see what I can do.

I'm holding up, the pneumonia is working its way out of my lungs, and the Wii my parents got me for Christmas is helping to get me moving around more. Today, my Wii Fitness age is 57. I guess that averages out my age and the fact I have the lungs of an 80 year old. I'm optimistic that I'll get over this soon and the docs will give me some freedom in two weeks.

Ah. . . the sweet taste of freedom. Sauerkraut.