Friday, June 26, 2009

More wedding pictures

Buffett night #1

Last night was Jimmy Buffett night #1 - on the bus with the rest of the parrotheads. I am not a parrothead, but I am married to one. It was a fun day, I drank a lot, and I really don't remember much of the concert. I remember some of the songs, not all of them, and I can remember parts of the late day, but not all of that either.

Today is recovery along with going to the Phantom Gourmet Beach Party for some ribs and BBQ. We're leaving soon.

My body hates me right now. And it won't be getting any better for at least another two days. Stuffing myself full of meat today, then Buffett #2 tomorrow - Ti and I in the car. We probably won't drink as much, and I'll probably remember a lot more about the day and the show.

Alright, off to go consume mass quantities of pork and beef products. Hmmm. . . pork and beef products.

Monday, June 22, 2009

Post-Friday Post

Well, it's Monday. Ti went away, did her PA thing, and came back last night. From what I can tell she had a good time. While I did not have the most exciting weekend, it was productive. Well, as productive as I can be while unmotivated. Partly because of the weather, partly because I'm naturally lazy (ask Ti, it's true), and partly because work has been kicking my ass all over the place lately, motivation is coming in small doses these days.

But enough of that. Today, to catch everyone, myself included, up with everything up until this point, I will provide a recap. Ti, correct me on whatever I'm wrong in writing. And I'll keep it moderately short.

May of 2007 - Noticed Mole on cheek
June/July 2007 - Series of appts with dermatologist, mole removed, deemed very cancerous. Thought cancer was horrible and was slightly depressed over having cancer.
August 2007 - lump forms on my neck. Freaked out about cancer, I go see doctor. I get anti-biotics and get sent home. More lumps pop up over the next few months.
November - See my PCP (other doctor wasn't my pcp), referred to ENT, have biopsy done. Diagnosed with Hodgkins, the "Diet Coke" of cancer. Depressed over having cancer, AGAIN.
December 2007 - meet with oncologist, hear of these so-called "Side effects" of chemo, start treatment December 19th. Last day of work for 2007 - Dec. 18th.
Jan 16th, 2008 - Have Power Port placed in chest, nurses can't find veins, arms on fire a week after chemo. Chemo goes faster, nurses happy, I sleep a lot all month. Out of work for Jan.
Feb. 2008 - Back to work part time, about 5/6 days every two weeks plus whatever I can do from home. People at BU don't notice I'm not there. PET scan after 2nd cycle - shows decreased masses, lumps in neck and collarbone all gone.
May 2008 - Treatment over, I look like hell but no one wants to tell me that I look like hell. And I did, I've seen the pictures. Yes folks, cancer patients look like cancer patients occasionally.
June 2008 - PET scan, wonderful news. The nodes were either growing during ABVD, or decided once we stopped chemo in May to grow really big really fast, for what we call a relapse. Start to plan for the rest of the year.
July/Aug 2008 - Start R-ICE, 2 cycles. 3 would have killed me. Found out 2 things: I am highly allergic to Rituximab, and even 1 Benedryl pill will knock me out for hours. A bag of liquid puts me out all day. Hair falls out. Beard falls out while eating corn on the cob. On July 4th, spend the weekend at my friend's wedding, knowing the bad news but keeping it from everyone so that it doesn't put a damper on the occasion. Still looked like crap.
Sept 2008 - Labor day, shave head, go have engagement photos done at Fenway. I was looking better, and I was feeling better. Physically. Mentally I wasn't sure how things were going to go. End of month, get my 2nd catheter put in, this one an outie that I had to take care of and clean daily. Last day of work, September 18th. This time for the rest of 2008.
October 2008 - Go through aphresis in preparation for my stem cell transplant, have conditioning chemo, etc. in whatever order it all goes in. Collect all the needed cells in one day, but kept shutting the machine off for some reason. Get admitted, go crazy 3 days in, then get my stem cells back and celebrate my rebirth by not eating solid food for 10 days.
November 2008 - find out that eventually I need my own PCA pump at home. Morphine is the best thing ever, mucousitis is the worst thing ever. And I come home. With even less hair than when I went into the hospital with. Celebrate first Thanksgiving with a turkey cooked by my wife - her first one. Lots of Turkey eaten in two days. THEN we find out I can eat leftovers for a few days afterwards. But not before the turkey. Boo.
December 2008 - Christmas shopping online. Christmas with my parents and my first meal, post-transplant, that wasn't cooked in the condo. Lots of doctors appointments, and I'm developing pneumonia. Hospitalized for viral pneumonia - although the doctors aren't calling it that until after they send me home. And I get a new toy - an incentive spirometer. Incentive? The only incentive is phlegm. Hair grows back. But it's black.
Jan. 2009 - Yay, happy new year, 2008 is over. I get to have take out. I also get to eat out. Out in public, wearing masks, eating food made elsewhere, learning my taste buds and stomach are not what they used to be. And may never be again.
Feb 2009 - Day 100. End of the Mask and Glove days. Back to work part time. Back to reality. Start of radiation.
March 2009 - End of radiation, patch on the back of my head falls out. A square patch. Curious? Shoot me an email and I can direct you to the wedding photos that highlight it. My beard also partially falls out. The 'stache is born. And the hair on the top of my head is now dark brown, with my stache and sideburns bright orange/red. Back to work full time after radiation ends.
April 2009 - A month with not much change healthwise, except I was less tired at the end of the month than at the beginning. I start going to the gym.
May 2009 - Allergies? Pneumonia? Something at the beginning of the month, but mostly gone by the wedding. Yay, wedding. Married, honeymoon, home, sleep. Busiest three weeks of the past few years.

And that pretty much brings us up to now. I know, I left out lots of little details, but you know, you can go back and read the blog for those months if you want to be filled in. Except for everything pre-Sept. 2008. Then you'll just have to take my word for whatever happened. Or ask Ti, her memory is better about those things, especially on the days I was passed out from chemo.

So, how am I doing today? Healthwise, I'm not doing bad at all. I have the energy and stamina to work all day, and even though I haven't been in a while, I could probably do an hour at the gym a few days a week. Which I will start next week. Work is keeping me occupied from 9 - 5+, but home has been more or less the same as it was before the wedding. We come home, someone cooks something, we eat, watch TV until Ti goes to bed. Not too exciting, but it's a routine, which helps with all of the other adjustments.

Mentally, I'm trying not to think about work when I come home, because the place is all-consuming. During the day, there is something I should be doing every minute between 9 and 5. I feel guilty if I slack off for a bit (even though it's the summer), because I have enough stuff to keep me busy every mintue of the day.
At home, things are just things. Life isn't so easy right now, but I'm not going to air that laundry out in public right now.
But as far as me, I'm surviving. Right now, when I'm alone, either while I'm commuting to work or home, or when I'm home and not fixated on TV or a game, I'm thinking. Thinking about July 30th. It's the date of my next scan, and as much as I want to be level headed and as steadfast as a rock, I also want to be able to freak out and panic and all that. But I can't.

I'm not sure how I'm going to approach that day. Last year when I had my PET, I had a feeling. I knew something wasn't going my way. Believe me, I'd rather be right about my picks at the horse track than about the results of the most important scan of my life (at that point). I don't have the same feeling about the scan coming up in July. I have different feelings. I was worried about my SCT, but it was for the best, and at that point it was either do it or sucumb to the disease. I'm not worried about this scan - I'm terrified. And I have 6 weeks to think about it, fixate on it, work myself up about it, overthink it, and everything else. There are only two results - either I'm clean and done with this thing or I'm not.

That's all I think I can write tonight. I need to sleep.

Thursday, June 18, 2009

Pre-Friday post

Today feels like Friday. Ti had today off, and she's leaving for NY tomorrow, and people at work don't know what day it is either. So it's not just me.

It's been an odd week. Not great, not horrible, just odd. Although last night the new wife and I celebrated our "one monthiversary". I don't want to call it an anniversary, because it hasn't been a year. But I don't know what to call it. Moving on. We had a nice dinner at the Summer Shack, and a few drinks before and after dinner at a few bars around the restaurant. It was a nice evening. And there was peace and harmony in the kingdom.

My stomach virus, flu or whatever you want to call it has mostly subsided. I called my nurse, Michelle, and she told me it was probably viral and that it would go away over the weekend (last weekend), and it kinda did. I still have some lingering effects, but those are starting to go away too. To make doubly sure it wasn't a case of food poisoning from two weeks ago, we had more raw oysters last night. So we can start the whole process over again (just kidding). But we did have raw bar oysters - those were good.


I don't want to go to work tomorrow. Not that I'm dreading anything, it just feels so much like Friday that I don't feel like I have to go into the office in the morning. But I will; there is work to be done, students to orient, and computers to fix.

Time to turn on the TV and become a couch potato for the night.


Wednesday, June 10, 2009

New, ahem, old problems

So I had to change the original title of this post. There was a local news story last night about bovine flatulence, the graphic they displayed on TV now my facebook avatar, and I thought it was the funniest thing ever. I still kinda do. I guess it was a slow news day.
Moving right along, I've come down with a stomach flu. I've had it since Saturday night. Ti and I originally thought it was due to something I ate - we ate some raw clams and I had fish and chips at a very nice restaurant - but the continuing problems lead me to believe I've been struck with a critter of a different nature.
I've been drinking lots of fluids to keep myself from being dehydrated, and mixing in gatorade to replenish what's been taken out of me. Food-wise, I haven't been eating much. I do eat, but I think by the time this has passed on, I'll be down a pound or three. Not the worst thing in the world, and I'm padded enough to survive a little bout. I know, believe me, I know, if it keeps sticking around, I'm calling the doctor. I just don't want to spend time in the ER, or be admitted for the weekend.
On the plus side, it's getting easier to get up in the morning ;)

Overall, allergy-related issues and stomach-related issues aside, I am seeing improvement in energy and stamina and my overall health. Not a major, "I can go run a marathon!" amount, but more than I had previously, in the posts where I complained about it.

I am also going to ask something of you, faithful readers and followers. After my next scan, at the end of July, I am going to start looking into ways that I can contribute to the cancer community. Not necessarily raising money, but opportunities to volunteer, maybe to talk to newly-diagnosed patients, something. There are so many others that are active, while still dealing with their own disease, that it makes me feel like a frog on a log. Waiting for the flies to come to me - and I know things don't work that way. Give me ideas. Send me websites. I'll be looking into what Dana Farber could use me for. Blogging about my experience is a start, but I know I can and want to do more. And if there are folks out there who want to do things with me, that's cool too.

Well, I'm going to go watch the final two outs of the Sox game. They're winning at the moment. Let's hope it stays that way.


Thursday, June 4, 2009

Whatever bubbles, bubbles up

So it's Thursday. It used to be my favorite day of the week - because it used to be bar night #1. That, and if we didn't go out to the bar, there was usually something decent on TV, so the night wasn't a waste even if we stayed in for the evening.

Well, now that I'm older, and my treatment has wrecked my body, Thursday night is pretty much a recovery night so we might be able to do stuff on Friday night. I love how working a full day then going out requires a staging day.

But the week is almost over, Friday is upon us, and that brings us to the weekend. I think we are going to attempt to go to the cape for one of the two days, go to a winery, go a brewery, then go to a lobstery. Spend a little time outside in the sun by some sand and the ocean, then fight traffic all the way into the city. Nah, it won't be that bad. It should be fun and a little relaxing. Not a lot of running around, and maybe some excellent food + drinks. We shall see.

I have decided that my body is on strike for the duration, as it doesn't want to get out of bed in the morning, and when I finally negotiate to get it into the shower, I start these coughing fits for 10 - 15 minutes. I don't cough for the rest of the day, most of the time, but in the morning, it is brutal. So apparently my recovery is no longer a team effort. If I could kick my own ass into cooperating with me, or at least give me a fair chance to fight the cough/phlegm/mucus ritual, I'd appreciate it, but no such luck right now. And then as the day goes on, my body decides it's tired when I'm in the middle of stuff. I have work to do damnit! Coffee sometimes works, sometimes it doesn't. Sometimes sleeping all weekend (like I did last weekend) gets me a few days of reprieve, but I can't waste every weekend sleeping 15 hours a day.

Anyway, enough complaining. I have a trip to plan, TV to watch, and a Rum and Coke to drink. It's been a long day at work and I feel like Mike Tyson's punching bag.