Wednesday, December 31, 2008

2008 no more!

Happy New Year everyone!

Monday, December 29, 2008

Morning, grumble grumble

Good Monday Morning all.
It's the last Monday of 2008. So far, it's bright and sunny outside. Maybe it's as warm as it looks, but I doubt it. I'll find out later when I go outside for my daily walk. It's part of the routine I'm supposed to go through to rid myself of the pneumonia as well as start to build up my stamina. Unfortunately none of my restrictions were lifted last week (due to said pneumonia), so it's more of sitting at home in front of the TV for me. If it was nicer out, I'm sure I'd do more outside (I'm kicking myself for not being more active pre-stem cell transplant now), like yesterday, but with the wheezing, coughing and other gross stuff, it is pretty much do my walk then get home and cough for a bit.

Enough about my misery. Here are my New Year's resolutions for 2009:
1. To not have cancer anymore and start to get back to my previous life (not something I can hold myself to so much, but I can try)
2. Lose weight. This one may be easy or not, depending on how things turn out. I'm down 20 lbs from when I went into the hospital in Oct. But since most of what I lost was muscle, there's still plenty of stuff to lose. That and I'm not supposed to be losing weight now, I'm supposed to be gaining a little a week or maintaining.

That's what I have so far. I still have a few days to come up with more, so I'll keep thinking about what else I'd like to work on for 2009.

I just have one hope. That 2009 is a much better year than 2008 was. Many people have great memories of 2008, and had enjoyable experiences. I too had a few, but overall, the year was probably the worst of my entire life. I'm looking forward to it being over. 2 more days. Then I can start 2009 miserable, but getting better, knowing I can look forward to the rest of the year and the good things it will bring.

Happy New Year all!

Wednesday, December 24, 2008

We wish you a merry mucus, and a happy new beard.

Bleh. The holidays suck. I'm feeling better in some ways, but I feel that my viral pneumonia (we've decided this is what I have) is holding me back. So over the last three or four days, I've starting having massive coughing fits. My body is trying to do something about my condition. It's just painful and horrible and disgusting, and that's just from Ti's comments as she watches me go through it. But apparently it's what will make me better. If I wasn't a cancer patient, we could use a humidifier to help break up my congestion, but alas, they're breeding grounds for all kinds of nasty things I shouldn't be near. I got an early present from the clinic; an incentive spirometer (yes Angela, they finally gave me one). I breathe into it, it makes me cough. It's kinda like a stationary bike for my lungs.

Anyway, enough about me. I'd like to wish everyone a Merry Christmas. I hope tomorrow brings you everything you wished for from Santa (but only if you were good), and that the hassles of dealing with family aren't too much.

I'll have some post-Christmas stuff to put up after the holidays. Until then, Merry Christmas!

Friday, December 19, 2008

These are not the droids you're looking for

Visited the Dana today and met with my actual doctor today for a little bit. The good news: they decided to let me go home and not keep me at the hospital for a few days. I reported yet another fever (the one I had on Tuesday) and the return of the coughing fits I had when I came home. He contemplated keeping me there, apparently, but instead told us I could go home. Also, officially I'm off of three more of the scripts I was on when I came home in November.
Bad news: because of my fever/cold/cough/general miserable health for the past few weeks, no restrictions lifted at all. Maybe next week (appointment set for Christmas Eve - that would be a great early present to get - dinner from Bertuccis or Uno's?) we'll get a clear for something. I'm still only on day +52 today, with another 48 to go before all of the restrictions are lifted and I can resume normal activities. Barring any more complications.
Really bad news: This isn't official from the doctor, but I may be showing signs of lung damage from one of my treatments. I've had a very fast heartbeat, and have also been unable to take deep breaths for a few weeks. It's better over the past few days, but I've also been coughing up stuff out of them. The doctor rattled off several causes for the heartbeat, including possible lung damage. Not enough O2 getting to where it needs to go, heart working a little harder to get me moving around. We'll keep an eye on this and see how it develops. I'm hoping with a little more moving around and exercise, I'll start to get back to normal.

According to Dr. F, we're still on for going to my folks next Thursday for dinner. Unless I'm still infected with whatever it is I have. We'll know in a few days if I'm going to kick this or not. I'm hoping I will.

Have a good snowy Friday night. Stay in and stay warm.

I finally found a benefit to not being able to go anywhere. When we get snowed in, it's just another day.

Wednesday, December 17, 2008

Not well, but at least I'm home. And miserable at home is better than hospital food.

So last night I had a fever. It was back up to 101. I did NOT call the clinic, because this is what I spent the weekend there for, only to be sent home without any reason why I was sick and nothing to take for it except for antibiotics. Which would be great and all, except I was told that most likely I have a viral infection.
I'll tell them how my week went on Friday. Today I haven't had a fever, but Ti made a pizza for lunch that didn't agree with either of us. I used to think that I knew what heartburn was. I was wrong.
Anyhoo, enough with the cheerful news. I think I'm done with my Christmas shopping, I'm 3 days away from maybe having some restrictions lifted (I think I'm jinxing myself by saying that in almost every post).

I'll talk to you all later. Maybe if I'm lucky, I'll get to see some of you in the next few weeks. But we'll see. It's up to the doctors.

Monday, December 15, 2008

Home, again.

They let me out. Yesterday there was a new restriction added where they were making everyone (including Ti - apparently they thought she worked there) wear yellow vinyl gowns when coming into my room. Whatever it is that I have, they didn't want me spreading to everyone else, I guess. Even though they still don't know what that is yet. We go back to the Dana on Friday, and I'll meet with my doctor, and we'll see where we are at. I'll be at day +52, and even with the hospital stay, I should have a few restrictions lifted. Maybe.

That's it for today. I'll talk to y'all later.

Saturday, December 13, 2008

Ugh. The hospital.

I've been re-admitted to the hospital. I spiked a fever yesterday morning, called the clinic and they told me to get there asap and pack a bag; I was getting a stay in a 4-star hospital room complete with room service, towel service, and free blood pressure and temperature checks every few hours.

It's been weird. I wasn't feeling great yesterday morning, but after all of the waiting around DF all day for the tests they wanted to run, I started feeling better. We got the DF around 9:30, and I wasn't getting settled into the hospital room until 7:30. They took my vitals and I still had a fever, and the rest of the vitals were a little off from what they've been, but nothing too bad, no flags.

This morning, I feel better, if I was home I wouldn't think anything was really wrong with me. But my heart rate has been really high, and my blood pressure has been really low. I can't explain it. I've been drinking, I ate this morning, I was even able to shower without any problems.

After all of the tests, the doctors are starting to think my infection is viral in nature. It's frustrating because it's interfering with not only my quality of life, but also my forward progress. I'm getting my energy back, and I want to start to do stuff, but with the infection lingering and causing all sorts of issues over the past month, I'm feeling limited. I get winded walking up even a small set of stairs right now, because the infection has been interfering with the amount of air I can draw in, and I can't really take a deep breath right now.

I should be home as early as tomorrow, if not then Monday.

I'll post again once I'm home. Just a little bump on this long road I'm travelling.

Thursday, December 11, 2008

The lights of Christmas

We took a drive tonight, to go see the lights around the neighborhoods near here. We didn't stay near here because the people around here suck and don't put up any holiday lights at all. Eventually, after driving around a bit, we found lots and lots of decorated houses with lots of brightly colored lights. It was amazing and a reminder of what being a little kid this time of the year is like. Since I don't get out much (as if you really needed me to say that again), it was really nice to be outside, even if I was only in the car.
My cold/sinus thingy is starting to go away. This morning I woke up with no headache at all, and I slept a solid 6 hours without waking up, which I haven't done since I can remember. Unfortunately the headache has come back with a vengeance tonight. We'll see how it goes.
One week from tomorrow we head back to the Dana, where I hope this sinus thingy is gone, and some of my restrictions finally get lifted. We're meeting with my actual onc as well, Dr. Fisher, whom I haven't seen since before the transplant, so next week will make it about 2-1/2 months since I've seen him at all.

All I want for Christmas is for this all to be over and things to get back to "normal". Let's see Santa bring that in his bag of presents.

Monday, December 8, 2008

I don't like Mondays, I want to shoot, shoot, shoot, shoot, the whole day down

So my hair is coming in more. My goatee will be in soon, but I dunno how it will look yet.

The only exciting news since last Friday is that I've come down with a headache I just can't rid of. I've had it since Saturday morning, and nothing I do will make it go away. I take Tylenol every few hours and it seems to settle down for a bit. I've spoken with my NP and she told me to take Sudafed, as she thinks it has to do with my sinuses. I agree, I think. We'll try it for a few days and see what happens.

I'm looking forward to the 19th, as I want some of my restrictions lifted. Specifically I want to eat out. It's amazing how much city life has modified my taste in food where I need to eat Mexican, Thai, Italian and all of the other ethnic foods I didn't get to eat as a child. I like home cooking, and most (sorry hon) of what Ti cooks for me every day, but there is always that craving for a burrito, or Pad Thai, or even just a meatball sub from the place down the street. The TV commercials for Dominos, Taco Bell, Bertuccis and everywhere else really don't help either.

Bleh. I'd like to be somewhere that isn't the clinic, the inside of the condo or the car. It's been about a month since I got out of the hospital (can you believe it?), and 7 weeks since I've been anywhere besides those places. I'm starting to feel like I live in a cabin in northern Maine, where there really isn't anywhere to go nearby, and it's miserably cold outside so there's no reason to go out anyway. I guess I wouldn't be a good candidate to live on the international space station.

Anyway, I think it's time for a shower. Talk to y'all soon.

Friday, December 5, 2008

Quiet on the home front

It's Friday. Not that it means a hell of a lot to me these days, but it's the end of another week. I can't believe it's already been a week since Thanksgiving. I'm almost done with my Christmas shopping, but I may wait until I can go to stores to finish up.

My health is in a bit of a roller coaster mode now, the cold thingy I was fighting off has come back a little bit, and today I get to start on my 2nd bottle of Robitussin DM to try to get rid of the cough and the gross stuff that comes along with it.

On a side note, my facial hair is starting to grow in again. I haven't decided what to do about it yet. Unfortunately right now it's limited to around my mouth, the sideburns aren't really growing in too quickly.

Some of my other fellow Hodge warriors aren't doing so well right now. I just want to wish them luck with their treatments and let them know that I am pulling for them. I can't imagine what they're going through, especially the folks going through clinical trials, but I hope everything leads to remission. It gives me perspective and scares the hell out of me a little bit. When my NP started feeling for nodes on Monday (I know it's her job and a precaution), it was a scary reminder that what I just went through isn't guaranteed to work. My onc said I had about a 60% chance of the cancer going into remission. While I support and want to help out those going through trials and other treatments, I don't want to be one of them. And I know they understand; they don't want to be one of them either.

This has been a tough week all around. I'm still not getting energy back, still not sleeping well. I've started taking walks around the block to get the blood flowing and start to build up my stamina, but between the weather getting colder, and the frustration at the fact I get winded walking from my condo to the corner of the block, it's not going to be easy. If we had room, I'd get a stationary bike, but there's nowhere we can really put it in here.

Maybe next week will be better. The first snow always seems to bring a change around here.

Tuesday, December 2, 2008

Good Morning December 2nd.

23 days until Christmas. 22 shopping days if you're keeping count.

It's a bright sunny day outside and I'm doing ok.

It's going to be a good day.

Monday, December 1, 2008

Another trip to the Dana

We went to the onc clinic this morning for my routine follow-up appointment. I did a bonehead thing and checked in at one desk but not the one I was supposed to, so we were late for my appointment, even though we were there 30 mins early.

My counts were on the rise again. My rbcs are up to over 40 (average normal is 40.7), my platelets are at 189,000 (normal is between 150,000 - 400,000). I am Superman. I can do anything. Except go to stores, the mall, restaurants, work, other people's houses, and anywhere that isn't the condo. So I guess I'm not really Superman, just someone who is ahead of the curve with my recovery. Unfortunately because of the day (I'm at Day +33 from the transplant), I still have restrictions. And I was also told when I can start eating again from places that aren't our kitchen, that I have to be careful and not dive right into the fatty foods that I see on TV. Sorry Mike, I can't have that bucket on the first day :( Also, that day got pushed back a little bit too. Because my counts are so good, my next appt isn't for over two weeks, and I won't get the ok to do more stuff until then.

I've also been told to get my fat, lazy butt off of the couch and go outside. It'll be easier over the next few days because it's supposed to be warmer out. Ti and I will go on walks around the block to get me some fresh air and move my legs around. It should also help me sleep better at night too.

Apparently I'm going through the DTs due to the morphine I was on during my stay at the Brig. Our wonderful Nurse/Doctor/wealth of knowledge said that it would take a few weeks for me to get over the heavy dosage I was on during the transplant. I was on a pump for about 10-11 days and I was using it like it was going out of style. So like an Alcoholic or other drug-dependant folks, I'm suffering from withdrawl symptoms, we hope.

Well, that's all I have to report from this front. Enjoy the bright sunny afternoon. I'm going to try.