Next stop, remission

We Walk

2011-09-01T21:48:00.000-04:00

On October 13th, Ti and I will be participating in the Light the Night walk, in support of the Leukemia and Lymphoma Society. In case anyone would like to sponsor us, or even walk with us, here is the link to our team page:http://pages.lightthenight.org/ma/BostonL11/TheGoldenBeaglesIt is a good cause, near and dear to our hearts. And we get balloons!Go Sox!

And. . . the winner is. . .

2011-07-28T20:12:00.001-04:00

NED. No disease at all. All clean.

PHEW.

Apparently my swollen nodes are salivary glands - not lymph nodes. Weeks of freaking out over an infection.

Anyway, resume whatever you were doing.

G'night.

Twas the night before 2.5 year scan

2011-07-27T22:00:00.002-04:00

I think. I'm not sure where I am right now. I'm between being completely done with this part of my life, and being relapsed. For almost 6 - 7 weeks I've had two very swollen glands underneath my jaw, about the size of walnuts. Of course, to the normal, non-cancer surviving person, it's just the lingering effects of an infection. To me, and to probably anyone else that experienced the hell my wife and I went through in 07 - 09, it's a sign of panic. I go through all the treatment, the chemo, more chemo, SCT, rads, recovery, restarting to live my life as a once-again "normal" person, to have the visitor I never wanted in the first place to return?

Well, it may not be the case, I just may be paranoid. But we'll find out in the morning. I'm not sure of the stats of possible relapse at this point; I'm not even sure there are stats. (there are - it's just getting late, and I've had a few glasses of wine so I can sleep)

Tomorrow brings another day. We'll just have to wait and see what else it brings.

Maybe good news?

Bleh.

2010-11-13T00:51:00.002-05:00

It's been two years and one day since I came home from the hospital. The transplant was October 28th, and it was 14 days before they let me go. But they almost didn't let me leave. They probably shouldn't have; I wasn't ready.

What the doctors never told me was that life would never return to normal after the transplant; after cancer. I guess I should have known that. Looking back over the past two years, I have spent so much time ignoring the two that came before it. Throwing myself into my work, getting caught up in whatever was going on at the time that I haven't spent much time thinking of what I, and also Ti, went through for a long time. I haven't put anything I should have learned from the experience to use.

Two years gone by since the long road to recovery started and I still have more to go. The physical effects of chemo and radiation have mostly worn off, my beard still isn't even, and the scars and tattoos cover my body. They'll continue to be my daily reminders of the most difficult fight I've ever been through.

But they aren't the only scars I have. I'm still deeply scarred emotionally. There is much hiding underneath the surface that hasn't been resolved or killed off my chemo. Two years out and I'm still as angry, sad and confused as I was going into my first chemo treatment.

I'm not sure if it's normal or not, but as soon as I was well enough, I walked away from the life I had during treatment. Stopped visiting the online boards, stopped reading the blogs of others fighting their own fights, stopped everything. I can't think this was healthy for me - compartmentalizing a huge part of my life and putting it away like a jacket in a closet. Dealing with my illness, the treatments and their side effects made me try to suck it all in and be as strong as I could. I just never spent time letting it all come back out.

Congrats to Bekah for finally reaching remission. It's been a long, hard fight, and maybe, just maybe, she can take a deep breath and enjoy what tomorrow brings.

Good night everyone.

- B

Last stop, this post

2010-04-11T13:07:00.002-04:00

This is the last official post for this blog. I'm officially in remission, I'm being deported on Wednesday (not out of the country - my PORT-a-cath is being removed). And I have enough hair and energy to think that I'm safely on the road to recovery.

So, I'm putting an end to this part of the journey, and moving on. I will leave the blog up for as long as Google lets me, but it will always be a part of my life as well as a story of a cancer survivor that I hope will help others going through the same struggle.

I will be making a new blog that I probably won't update as often either, but will be about a different part of my life. It will be at: http://lifewithscoutandmolly.blogspot.com/

Good luck to everyone. I think everyone could always use a little.

Ho Ho Ho . . .

2009-12-24T12:54:00.003-05:00

Merry Christmas to all, and to all a good night!

It's been a year since the transplant (well, over a year), my hair has kind of grown back, I'm married, and own two beagles.

I think this holiday season I deserve to relax and enjoy the hard work I've put into the last two years of my life. I am not sure my bronchitis agrees with me, but we'll work something out.

Talk to you all in 2010!

B

To post or not to post

2009-12-04T21:37:00.002-05:00

I feel a little guilty over not posting anything for a bit. I did go to Dana twice in the past 5 weeks. Not for illness or anything like that, I got my flu shots among other things. Back in October I got 6 shots at once (3 in each arm), and on Tuesday I went to get my H1N1 shot.

Not that it helped; I'm fighting off something nasty and respiratory in nature. I can feel the fluid in my lungs. If it doesn't clear up, I'm calling my Doc on Monday. I don't need pneumonia for Christmas. Again.

I've at least a full week of fighting this off. :( It started in my sinuses, then migrated south for the winter.

Afrin, Sudafed, Benadryl, Advil Cold and Sinus did nothing.

But anyway, weak immume system warrior fights on. Tomorrow night we have a party to go to. To see people we haven't seen in a long time. I'll try to contain the mucus until an appropriate time.

Ti's making wings, which she only does for special occasions. They're not really that good for us anyway. Lots of fat, sodium and oil. Hmm. . . fat sodium and oil.

Have I mentioned I'm down below my college weight?

Anyway, I'll chat with you all later. Gotta eat before Scout wants to go for his last walk of the night.

Happy um, unbirthday?

2009-10-28T21:50:00.002-04:00

Well, one year ago today I received my second lease on life. I looked a lot different, was very ill, and wasn't sure I'd make it to 2009. Move ahead 365 days and things are much, much different. Better in many aspects of my life - I'm still here.

Not much to talk about tonight. Ti took me out to a very nice dinner, and we have to walk the dogs soon. Then off to bed.

Technically today isn't anything special. But it will always be important to me. Tomorrow, on the other hand, is a very special day - 4 years since Ti and I started "dating" or whatever you want to call what we did. On that day, we went to Salem in a snow storm. Ended up drinking at a bar for a little bit before getting dinner at the Texas Roadhouse, and then acted like giddy teenagers on the couch.

Jeez, time flies. Sick, not sick, planning a wedding, not planning, it just goes away.

Eh, too much waxing nostalgic for me. Time to walk the beagles.

Good Night! and Big Balls!

Where next?

2009-10-09T00:02:00.004-04:00

Well, I've been in remission for quite a long time. It's been a year since I've had any evidence of disease in any of my scans. But I'm not done with the blog yet. October 22nd is my next appointment, and marks my anniversary since being admitted for my SCT. And 19 days from now marks my 2nd birthday. My re-birthday - one year since being saved by my own stem cells.

It's funny to look back and think of how much time has passed, time that I probably should be more grateful to have than I've been. Not that my disease would have killed me that quickly, but my long-term prognosis is much brighter because of the suffering due to the treatment and recovery.

I still have a long road ahead, I'm only 1/5 of the way to where statistics tell us that my cancer won't be coming back. So now there is a chance. But there are too many other important things in life to worry about. My last scan was clean, I'm getting my immunizations soon, and then after my followup scan in Jan, I'm getting my port taken out.

Then the last reminder of my journey that I carry around like a burden will be gone. Leaving me only with my scars.

Cancer sucks.

But at least there was cake. Cake makes everything better.

G'night.

P.S. A mantra for all of those still going through treatment. Say this to yourself every morning you wake up, and every time you're about to start something horrible (chemo, rads, etc.)

I am Superman (or woman)
I can do anything.
I am Superman
I will be recovering.

Happy birthday to me

2009-09-29T22:50:00.002-04:00

I turned 32 today. That's significant, at least to me, because a year ago I was about to start the process of harvesting my stem cells and then the transplant itself.

Ti and I were at Mohegan Sun last year, we spent a few nights. Margaritaville opened, and we closed it out. That is probably the last time I can remember being pretty buzzed and out somewhere to enjoy it.

Anyway, I had a nice dinner, and a few days of stuff to look forward to. Have a good night, and big balls.

- B

Good Night, and Big Balls explained. . .

2009-09-06T20:25:00.003-04:00

So I have closed out a good number of posts with the phrase, "Good Night, and Big Balls!", which is how John Henson (YES, THAT John Henson) closes out an episode of Wipeout!. Which is the bestest game show ever created. Anything where very out of shape people take on an obstacle course where they are guaranteed to bounce off of something and into some water or mud is an instant hit in my book. Not to mention that typically there are multiple obstacles with big balls in them.

Anyway, I am free of cancer, and have decided to take a break from the cancer community. Not a permanent one, just a breather so I can get out of the "I'm sick and need to be around others like me" mentality and back into what life was pre-lumpy throat. I think the online support system, as well as everyone I've dealt with at the hospitals are great - I just want to not dwell on the last two years of my life and move onto the next part.

At the end of this sabbatical, which I figure will be in September/Oct, I'm going to do the LLS Light the Night walk. I'll post about it soon because I need to get volunteers, money, etc. to do it. It's a great cause, and it's for a great group of people who need help - I should know, I was one of them.

I'll talk to you all later.

GN and BB!

Not quite done . . . yet

2009-08-03T21:55:00.003-04:00

Well, after some consideration, I'm not done with the blog yet. I still have a few appointments in the next 6 months, including my next scan. I am feeling much better, I don't have much to worry about health-wise at the moment - I'm feeling pretty good. Still not sleeping, but it's not because of stress related to my disease. There are other reasons I'm not sleeping now.

This will not become my dog's new blog, but I have an anecdote to share: last night, Scout, our beloved new beagle, crawled into our bed and flopped onto his side. Then he got up on one paw and started going to town on his crotch. Which happened to be facing me, about 6 inches from my face. I said to Ti, "Why do I get to have that view?" - and as the last syllable from the last word was coming out of my mouth - he turns his head and licks my face. Over my open mouth and nose.

And I still love my wife, even though she's still laughing about this.

Have a good night, and big balls.

Last post?

2009-07-30T20:42:00.002-04:00

Well, I have one correction - I had a CT scan with contrast, not a PET.

And I also have big news: As of today's scan, I have no evidence of disease, and the scarred nodes in my system have gotten smaller.

I'm dancing with NED. I'm in remission.

PET scan

2009-07-30T09:22:00.003-04:00

We leave in less than an hour. Today is the most important day of the rest of my life.

Nervous doesn't describe how I am. It's how I live.

Tonight I will post my results. This afternoon I will know my fate. Ugh, I hate drama.

News

2009-07-28T21:22:00.001-04:00

Read this!

http://scoutandmolly.blogspot.com/

She blinded me with Science . . . Diet

2009-07-26T00:02:00.001-04:00

Short post - we're approved for the dogs and will be picking them up on Friday.

Health, Work and too much wine

2009-07-23T21:27:00.002-04:00

I have news. Nothing about my health besides the fact that I've lost the ability to stay asleep for more than 45 minutes at a time. Hmm. . . could be because I have my first post-SCT scan IN A WEEK. And as I've noted before, I'm more than a little freaked out about it. I'm also stressed from work, as there are projects out the wazoo, plenty of busy work, and I can't figure out when to take a week off. And to boot, Ti and I (well, mostly Ti) has been packing, cleaning and boxing up stuff every night for the past two weeks for a few reasons - so coming home hasn't been too relaxing. Tonight, a little, but I have less to do than her. First reason: We now have a storage unit to put all the excess that we want to keep into for when we have a larger space to live. Second reason: We're going through all of our bins and boxes, getting rid of clothes, toys, and other items we no longer need or want and donating all of it to charities. We like to spread the wealth. And the third reason is we're expecting two bundles of joy next week. And the place really needs a once over before we let anything four-legged and 12 inches off of the ground loose in here. Not really dog-proofing the condo, just making space for them.
So I get to bed at night and start thinking about a.)my test - and immediately take an ativan b.) work - may or may not take an ativan or c.) life with two dogs and all of the things that involves - good and bad - and usually take an ativan so I don't stay up all night. No matter what time I go to bed, I don't get to sleep until after 1, and I don't stay asleep long :(

In a week or so, almost everything besides work will have a resolution. I'll have the results of the PET/CT, and we are expecting to have two new pets. I'm hoping for good news all around, but if that isn't the case, I'm hoping one balances out the other.

It will be a nice change to have to worry about the well being of something else besides Ti and myself. The dogs will be a welcome part of our family, and hopefully a needed distraction.

And if anyone wants any red wine, let me know. We have lots of left over wine from the wedding that we are not going to drink. I'm up to being able to drink a few glasses occasionally, but nowhere near where I was before. I think I've finally grown up, at least as far as my alcohol intake is concerned. We won't discuss the bachelor party or the Hockey East championship game, but I've been a good boy since day 100. Mostly.

Good night folks. Sweet dreams and big balls.

Maybe. . . just maybe, if I close my eyes and wish really hard

2009-07-20T19:59:00.002-04:00

The people who place dogs called our references and then us tonight. Tracy (not sure on the spelling) told me that our references were great, and then I handed the phone to Ti, who was bouncing around me like a puppy.

Tracy is coming to our little piece of heaven to check it out to see if we're dog ready. It may not be the biggest condo in the world, but we have more than enough room for a few pets.

We'll see how it goes. It takes my mind off of next Thursday. And work. God knows I need a distraction from work now. And a genuine reason to want to come home besides the fact it's home.

Changes in lattitude, changes in attitude

2009-07-19T19:48:00.002-04:00

We applied to adopt two dogs. Two special dogs. They have their own blog. So we've adopted them so they don't steal my spotlight (just kidding dear) at http://scoutandmolly.blogspot.com/.

We are hoping to hear soon so we can start to clean and plan for the new additions to our family.

Summary of today's lunch

2009-07-17T12:48:00.001-04:00

(With thanks to Homer Simpson)

I'll make a wish that can't backfire! I wish for a turkey sandwich, on white bread, with watercress, and tomatoes, and... I don't want any zombie turkeys, I don't wanna turn into a turkey myself, and I don't want any more weird surprises, you got it! (Brian eats)... Mmm, not bad, nice ranch mayo, good bread, turkeys a little dry... THE TURKEY'S A LITTLE DRY!!!

Back to work.

Post 4th of July post

2009-07-05T22:54:00.003-04:00

Well, I didn't make a big deal about it, but my last post was number 100. I can't believe I've actually written 100 posts, I usually don't stay with anything for this long, not counting my job or my lovely wife (third time) that has been with me for almost four years. But we're here, at post 101. I'm still alive, still recovering, still moving forward. The stress of everything is overwhelming, but I'm dealing the best that I can. I'm a rock. And so, because of that, I roll.

I'll write later on this week. I don't have much to report right now, and I'm getting tired. It's been a pretty long and busy weekend.

Talk to you y'all later.

Post-Buffett Post

2009-07-04T22:26:00.000-04:00

Happy 4th of July to everyone!

More wedding pictures

2009-06-26T14:58:00.005-04:00

Buffett night #1

2009-06-26T14:32:00.002-04:00

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.

Post-Friday Post

2009-06-22T22:19:00.002-04:00

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.

Pre-Friday post

2009-06-18T18:04:00.002-04:00

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.

*Sigh*

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.

Night.

New, ahem, old problems

2009-06-10T22:05:00.002-04:00

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.

G'night.

Whatever bubbles, bubbles up

2009-06-04T18:15:00.003-04:00

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.

Return to Sender

2009-05-24T22:13:00.004-04:00

We're back. We have lots of things to do still (start thank you notes, unpack, clean up around the condo among other things), but most won't get done in the next few days.

The wedding was a lot of fun, but I can honestly say I don't know where the time went. It started just after 4, and before I knew it, we did our first dance, cut the cake, and then were saying goodbye to everyone.

Here is one picture from the wedding:

I wish the day lasted longer. People told us they had a great time, that it didn't seem like a wedding, and a few told me it was the best wedding/party they had been to in years. Unfortunately I don't remember it that way. It was a lot of fun, but between the ceremony, the pictures, the things we had to do, time just got away from me. I can count the number of songs I heard the DJ play on one hand. He played for almost 4 hours straight; I just was too busy to hear them. But it was unique, and a great experience. Definitely a day I'll not forget (of what I can recall).

Overall my health is stable. I'm coughing a bit, partially from my lingering whatever the hell it is I had last week, and partially from the dry air of LV.

Now, after more sleep tomorrow, and a much needed day off from everything, it's back to the grind on Tuesday.

If I don't get better by the end of the week, I'll probably be calling the doctor again. But maybe a few good nights sleep and a semi-regular schedule will make a difference.

This is for Ti, the new Mrs. Anderson:
I love you, and as I told you, I can't repay everything you've done for me over the past two years. It's been a journey, and we're still a long way from our destination, but here's to hoping to a smooth, paved road ahead. No more bumps, detours or anything else.

To everyone else: Keep hope alive.

Once in a while, life kicks you when you're down. Occasionally you pick yourself up and kick it back and things are good. This past week, I kicked it back and then did a shot of Tequila.

Talk to you later, folks.

Back in the saddle again

2009-05-19T01:01:00.001-04:00

I'm back. I'm married. Now I must go to sleep so we can go to Las Vegas in the morning. We leave in just under 6 hours.

Scared

2009-05-14T11:05:00.003-04:00

This is the last post prior to the wedding. The next time you all read this, I will be married. Now legally Ti will own half of my stuff. At this point though, I think she bought a lot of it anyway. Since she's moved in, I don't really differentiate between "mine" and "ours" very much. I did at the beginning, but I outgrew it as time went on and she still put up with me.

So going into the home stretch, especially today when I may not actually have a hell of a lot to do, it feels like it. I am also, once again, sick with some unknown malady. It started with a fever the other day, with the occasional shiver. And then it got a little worse over the weekend. I'd had little to no side effects to conclude that I had something like a cold or flu, just the fever and the convulsions/shivers. So we went to see Dr. F - who didn't really have any suggestions to what I may have. He looked me over, we discussed the side effects and a few other things, he gave me a script for Levaquin and sent me on my way.

Now being a very imaginative person, I of course started with the "it's just viral, it's just a cold" for the first few days. Then I had more time to think on it and got scared by what popped out. Most of the symptoms I have been expressing were similar to September of 2007 - my initial HL diagnosis. Being only 6 months out from a transplant, and telling lots of other people that they don't have cancer when they freak out about being sick, I should know better. But it was my turn to get beat on by the panic stick. I freaked out for a little bit, but got myself out of that defeatist "it's come back" attitude. I don't have a relapse, I have some kind of viral sinus mucus thing going on. The Levaquin I'm on is causing coughing fits during the day. The kind I'd feel bad having at a restaurant, or let's say, at my wedding.

So some rest is in order in the next few days so I can be healthy, active, and energetic during the wedding. I owe Ti that much.

I'll speak to you folks after the big day.

Scarred

2009-05-08T18:30:00.002-04:00

I know it's been a little while since the last post. This is a cancer blog and I don't have cancer at the moment. Not that I'm expecting cancer to come into my life again, I just don't have it now. So I'm not sure what to do with the blog. I'll try to update it so everyone who is following it can keep in touch with how I'm doing, but I can't promise how often I'll do so.

Last week we met with all of my medical staff at DFCI. They looked me over, asked me questions to see how I am doing, told me that I'm all done with treatments, and told me to come back in 3 months for a scan. (Well, I have to go back a little more often for flushes for my port) I'm in the post-treatment recovery period. I'm still missing hair, I'm still a weakling, and I can't walk up 2 flights of stairs without getting winded - although to be honest I don't know if could do that prior to the cancer either. So I'm rebuilding my life, brick by brick.

I'm back to work pretty much full-time. It is overwhelming, as I've said a few times, but I'm dealing with it. I'm going to the gym a few times a week. I wear myself out, but for the sake of eventually getting better and having more stamina and strength. We're prepping for the wedding. Things are moving forward whether I'm ready for them or not (Not a knock about the wedding, Ti). I didn't dive head first back into work a few months ago when I went back. But now I'm swimming in the deep end. I'm starting to make long-term plans for the summer, and some for beyond for both work and life.

I'm also tired. Of pretty much everything. I need a vacation - I just don't want to be at home. I need to relax, I need to breathe deep and take in air that hasn't been processed by 1000 cars. I'm almost past the "I fought cancer and all I got was this lousy T-shirt" feeling, because I have to get past it. There is still a little of that lingering, but its fading. As my health improves, I expect my attitude, my opinion and how I act to improve. I'm angry, and my patience hasn't really recovered, a combination that doesn't help me anywhere in my life. But I'm working on getting past that too. There isn't anyone to be angry at, just circumstance, and you can't really be angry at circumstance because it doesn't yell back.

Which brings me to the point of the post. These days, I have scars. Lots of them, all over my body. Most of them are from dealing with my Lymphoma, especially the emotional and mental ones. In time they'll heal. They'll fade away like the ones on my neck, back and chest. But for now they're still a little tender and exposed. The good news is there is only one direction to go, up. I'm not going to promise anyone that I will be more positive. I just promise that I'll be getting better. Right now the scars and healing I have to do aren't really on the outside anymore. I have to adjust to the fact that I pretty much missed most of a year of my life, and had it replaced with the most difficult thing I imagine a person can go through. There may be worse things, but let's not discuss that here.

It's a nice night. I think I may go for a walk. I dunno where yet, but I'm sure I'll find something.

Talk to y'all later.

Happy Birthday to me

2009-04-28T19:13:00.002-04:00

It's my 6 month birthday. Not as important as 1 year, but that's another 6 months away.

Yay. I made it 6 months.

Oink?

2009-04-27T22:24:00.002-04:00

Is the swine flu epidemic directly related to my bacon obsession? Are the pigs taking revenge on us for eating their delicious variety of meats? Will I have to wear a mask for the next month?
I dunno. But these are the things that go through my mind as I watch the news.

I'll probably be wearing a mask when we go to Las Vegas next month. I may even wear one at the wedding. Probably not though. It'll make for bad pictures.

I'm a little worried. But what can I do other than be more careful out in public.

It's a beautiful day in the neighborhood

2009-04-24T19:06:00.002-04:00

Today is a beautiful day in Boston. The weather is nice, the sky is blue, there aren't any clouds in the sky. I wish my health reflected outside. I am exhausted. I'm overwhelmed. I'm lots of things that I don't want to be right now, with 3 weeks until the wedding and 3 weeks and 2 days until Vegas.
I got my hair cut down pretty short. It's a temporary move, I think, as I may end up shaving it all off before the wedding. I'm still thinking about it.
As I complained to Hilary at Baldie's Blog (thanks for the mention btw), and she agreed with my desire to shave it. It's not the same as it was pre-cancer, which I expected, but I wasn't prepared for how different it would be. So we'll shave it and see how it grows back. I think.

Tonight is one of those nights that reminds me of my college days. One of those warm April nights where it's slightly chilly but still comfortable. I wish I had a deck or knew someone who lived nearby that did. I'd sit outside with my feet up, with a nice cold beer and watch the sun set and the stars start to come out. This is the great time of year between when it's a little too cold outside to when it's a little too warm (and moist) outside. Too bad it is short and usually rainy.

I'm going to get a beer from the fridge now. Even though I don't have a deck, we have the windows open, the Sox-Yankees game on TV, and it just feels right.

I hurt myself today

2009-04-14T19:28:00.002-04:00

Because I've decided to start being active. I've been going to the gym a few times a week, we've also been taking dance classes that have me moving around quite a bit for a short amount of time. Overall, I think my stamina is improving a little, tiny, imperceptible bit each day. My weight has been bouncing between 183 - 186, depending upon the day and how much I eat. I'm trying not to get back into the habit of eating too much for lunch and still having a sizable dinner. And I'm attempting (poorly at this point) to eat healthier. I don't really want to say what steps I've taken in that direction. You probably don't really care all that much anyway. I really don't care all that much either.
Moving on. I'm still pretty damn tired when I get up. Granted, I haven't been going to bed until midnight or later, but I can't get up in the morning, and I'm dragging around all day. While my stamina may be improving, my energy level has not. Unless, it too is improving in tiny amounts each day - like Mega Man's energy bar.

Anyway, enough for now. Time to eat dinner.

Wondering what tomorrow brings. . .

2009-04-10T00:35:00.002-04:00

Forgive my last post. I don't know what I was thinking. First, complaining about being tired then going directly to discussing Vegas. I'll work on my blogging and try not to whine so much.

Ti and I are taking dance lessons, so we won't suck during our first dance. We have a long way to go, but I think we've come a long way in the two weeks since we've started. Now we're not fighting for the lead, and she's starting to pick up on cues to move where I'm leading us to. Fortunately for us, it's a song that's 2:30 in length, so even if we don't perfect it before the wedding, we can wing it and still probably look good. Probably not Dancing with the Stars professional, but decent for two folks who just learned the dance 6 weeks prior to the wedding.

I'm a bit excited tonight - BU won its game and will play Saturday night for the NCAA Men's Division 1 hockey championship. First time in over a decade they've even been close, and this year, they're the strong favorite. Good luck to Miami of Ohio, but I think they should just get ready for a tough game that they really have no chance of winning - otherwise known as assuming the position. Think Chicago Bears vs. the Indianapolis Colts type game. They might hang in there for a period or two, but by the third it won't be a game anymore. It'll just be the clock ticking down until the inevitable occurs. I'm expecting a 6 - 2, 6- 3 type of game.

Healthwise, still pretty much the same as I've been over the past few weeks. Slow recovery, but I'm losing a little weight. This time it is intentional, and I hope my doctors don't get too worried during my appointment at the end of the month. My energy is pretty low, with bursts occasionally, from caffeine and other stimulus. I was bouncing around the bedroom while I was watching the hockey game earlier. Now I should be sleeping, but for some reason, I haven't gone to bed yet.

I think it's time now.

Good night, sweet dreams and let's wish for a good sports weekend for Boston.

Bah

2009-04-09T00:32:00.002-04:00

It is what it is. And I need to sleep.

Work is tiring, sleep is tiring, everything is tiring. Even blogging.

So to conclude, Brian = tired. Very tired. All the time.

I know, so interesting. Such is my life, except for the wedding stuff and Vegas, both are weeks and weeks away - just under 6 to be exact. Six long weeks from now, I will be drinking and gambling and relaxing in neon-lighted glory, three days after marrying the love of my life. But 10 hours from having to get up to go on a Hoover Dam tour. Unfortunately, I know they don't allow people to bring alcoholic drinks on the bus. So I must get up early to get my fix in before the three-plus-hour tour.

Goodnight Moon. Maybe tonight you're full?

Just another Monday

2009-04-06T16:02:00.003-04:00

Life has started returning to "normal" - well, pre-cancer normal. I am not sure what everyone else is expecting when they see me. I'm a little thinner, have a little less hair, but otherwise I'm the same. I'm still not back to how I was back in August of 07, before all of this really started, and I have no idea how long it'll take (or even if I'll get back there). I'm exhausted most of the time, but try to ignore it so I can get through the average day.
I've been drinking coffee regularly, as the caffeine gives me a bit of energy (still tired, but oddly wired), but only 1 cup a day usually. Maybe once a week I'll have two during a day. I can still go to bed and sleep after a cup, it just gives me energy for a bit during the day.
I've been on a little bit of a bacon kick lately. It's driving Ti a little crazy, but it'll pass. I found a web site that sells bacon salt and baconaise (Bacon + mayo = yum). The quote they have on their site is "Everything should taste like Bacon". I tend to agree.

I've been going to the gym, which has been good, as it's getting me moving again. It's frustrating, as I'm very self-aware about the weights I'm using and how little weight I am able to work out with comfortably. 20-30 lbs max on most machines right now, and since I'm not doing regular weight training now (this week it's 45 mins on cardio and about 5 mins on weight machines - I'm trying not to overdo it) I probably won't be going up too soon.

Anyway, time to make the bacon cinnamon rolls.

Today's project

2009-03-28T10:18:00.001-04:00

http://www.browniepointsblog.com/2008/01/20/homemade-bacon-vodka/

Feel like busting up a Starbucks?

2009-03-27T00:26:00.003-04:00

Not much interesting stuff to write about this week. We had the shower on Saturday. Then I went to the Hockey East semis and got a little drunk. Well, ok not really a little, but I've been worse.

Sunday was all about not moving too much and recovery. I felt horrible in many ways. Drinking is not something I should have dove back into head first. I'll learn, right?

Tomorrow I head to the gym for the first time in probably 4 years. I would have gone sooner but the last 18 months haven't really loaned themselves to it. We'll see how it goes. People keep telling me not to push myself, but that's how I roll. I mean, after all I've been through, what's the worst thing that could happen - just kidding. I already know. So I won't put myself in that position. Nice and easy. I'll start with the 5 lb weights and see where that leads.

I've also started acupuncture. It's a little strange, but it may work. I dunno, they said to try a few sessions and see how it goes. Since this is a "spend money like there's no tomorrow" period - mostly on wedding stuff though, I don't feel bad about spending the money to go to therapy. And if it works, even better. It's just weird to think that sticking a dozen or so small needles in places around my body will do anything. But the Chinese have been doing it for centuries, and who am I to argue with traditionally used therapeutic tools.

In two weeks I have a massage AND acupuncture scheduled for the same week. It's nuts. I might as well enjoy it now. Pretty soon I won't be able to afford the time or the treatments.

Overall, I think I'm coming out of my funk. Or maybe its just the introduction of caffeine into my diet. I dunno.

Now I'll lay me down to sleep, before the lord cuts off my feet. Which would be awfully inconvenient.

I can
Hear the bells are
Ringing joyful and triumphant and I can
Hear the bells are
Ringing joyful and triumphant and

You snooze, you lose
Well I have snost and lost
I'm pushing through
I'll disregard the cost
I hear the bells
So fascinating and
I'll slug it out
I'm sick of waiting

I'm on a boat

2009-03-20T18:52:00.003-04:00

Ok, so I'm not really on a boat. We'd have to clear it with my doctors first. But in some ways, I feel like I am on a boat, floating out in the ocean. I haven't decided to dive head first back into my former pre-cancer life, at least not yet. I am dangling my feet in, getting them wet by doing familiar things and seeing how my post-cancer-treatment body handles them. Last weekend we celebrated St. Patrick's Day, and while I wasn't hung over on Sunday, I wasn't feeling quite right all day.

This weekend, we'll be going to the Hockey East finals; a weekend event my father and I used to do for the past few years that was rudely interrupted by cancer. We'd get tickets for Friday (two games) and Saturday (the finals) and make a weekend of it. Usually lots of drinking, stumbling around and troublemaking. It was fun. So I got us tickets for tomorrow night. It will be a long day, as we have the bridal shower in the morning (I'm going, long story, blah, blah, blah). I'm hoping to make it to the 3rd period.

I've been getting myself moving around by offering to cook. And most of what I've made has been good - at least Ti tells me so. Nothing too exotic, just a black bean chili, sheppard's pie, and a batch of pasta sauce. It keeps me busy and is a link back to what I liked to do before all this badness settled into my life. Maybe I'll find the recipie that'll bring me out of my funk. Get it? Bah, fine, don't laugh. It really wasn't funny anyway.

Music for the week:

Dracula from Houston - Butthole surfers: Great, catchy, upbeat song. With a twist!

Mad Flava - Fat Boy Slim: Everyone's life has a back beat. I'm trying to get this one to be mine.

One toke over the line - I just feel that way sometimes. Not high, just out of it.

Wonderful Night - FBS: More beats, more reason to want to get up and move around. Something sorely needed now in my life.

She caught the Katy - Taj Mahal: A return to my college Blues Brothers form. Also a great song.

You and me and the Bourgeoisie - The Submarines: From the iPhone ad; catchy and fun. It is ironic that the iPhone, the model consumer device of excess, chose a song about giving all of it up for its commercial. . .

That's it for now. Have a good weekend, and I'll chat with y'all later.

Leave more comments! I need to know people are still reading. Wallflowers of the world unite and leave your mark. . . on my blog.

Article I found

2009-03-17T23:48:00.002-04:00

This describes what I'm going through now. No more exciting stuff for me except work and planning the wedding.

http://www.ibcresearch.org/stories/what-weve-learned-and-how-we-help/gayla-little-on-post-treatment-depression-what-to-expect-and-what-to-do/

Friday the 13th post

2009-03-13T16:42:00.000-04:00

Radiation - Done.

Relay for Life

2009-03-12T18:23:00.003-04:00

Hey everybody, I've decided that I am going to participate in this year's Relay for Life, held at Boston University on April 18th and 19th. It's a walk to raise money for the American Cancer Society done over 12 hours. From 6 pm - 6 am. Us survivors (not the people who lived through the concentration camps, or the people on the TV show on CBS) get to walk the first lap.

I'm getting the info for singing up a team, so if anyone is interested in walking, let me know. If you'd like to donate, once I get whatever it is I need to do on the site done, I'll post a link to the fund-raising page.

I think it would be fun, and hell, since I'm just about done with my treatments, I'd like to start helping others.

UPDATE: Due to circumstances beyond my control (Looking at Mike, Srikanth and Dave), I cannot do the Relay for Life now. However, I would encourage anyone who wants to raise monye for the cause to participate.

Radiation Burn Blues

2009-03-12T17:19:00.002-04:00

Tomorrow is the last one. The final treatment I'll go through. We're going to assume that I'm through dealing with this and can finally stop acting like a victim of something horrible and move on with my life. Not that I've really been acting like a victim, but then again, when a doctor tells you have cancer, and you are subjected to almost 18 months of appointments, treatments and more waiting than a human being should ever have to do in one lifetime, you are moved into that category. Everyone else just expects the victim to play the part. I'd like to think that for the most part, I've taken my journey well, and in my opinion, the world should stop equating cancer with death. People should stop bursting into tears when they are told of their own illness or that of a loved one. Cancer is not the end of life. Well, it is occasionally, but people die of heart attacks and heart disease in numbers as large as those who pass on from cancer, but the stigma isn't there. When have you ever been told that you or someone you know has heart disease and then broke out into uncontrollable tears? Some people are in such denial about the whole situation that they can't even say or hear the word "cancer".

Foolishness. Grow up you g-d wimps.

Those of us that have cancer have reason to break down and cry on occasion. We're facing our own mortality, but for most of us, we'll survive. We might not be in the best condition when we're officially declared "In remission", or have a scan with no evidence of disease on it (it's called dancing with NED), but because we're still here, we can move on and adapt how we are to the world we're put into. In many ways, those that don't survive give the rest of us the strength to carry on our own fights. Many of us, especially those who lose a close friend, or hear of someone in a similar condition who didn't make it, get a chill down our spine, a sudden fear of dying. Probably left over from the days when we needed that instinct, but realistically, what happens to someone else is what happens to them. My fight is mine, and whatever bumps I've come across just make it interesting and unique.

I can understand the fear of the unknown, which is what it all comes down to on a very basic level. And relating to someone else who has what you have makes things easier to cope with. But as I said, each of us has a unique journey in front of us. And in the darkness of the night, when we are as vulnerable as a newborn, everything we are afraid of can invade our dreams and turn them into nightmares. But within each patient, each person who has dealt with and survived this disease, even those that didn't make it, lies a seed of hope.

Bringing this back to myself, and apologizing for the sermon, I have finally reached a plateau in my road. Tomorrow is the last treatment. Saturday is the first day of the next chapter of my life. I'm a little scared and anxious about being in this "Post-Treatment" phase. My body, my mind and my emotions have been through so much in the past 18 months. I'm now going to have to adapt from this part to whatever is next, and I'm not sure I'm ready for it. I am still tired and worn out, and I have to start eating healthier. The chemo diet is over. There are going to be lots of changes happening in the next 6 months of my life.

I just wonder if I'll be able to keep up.

Once again. . .

2009-03-10T22:37:00.002-04:00

The beard fell out. . . partially. But enough fell out that I had to shave the rest off. I left the sideburns and a 'stache. And I have a nasty sunburn on my neck. Except it's not a sunburn.

Life can only get better from here.

The wedding is just about 2 months away.

Sunday morning

2009-03-08T12:19:00.002-04:00

Yay. Its Sunday. I lost an hour of sleep, if you can call what I did sleep. Although last night was better than the past few nights. Maybe tonight I'll suck down a beer before bed. I dunno if it will help or not, but it's worth trying.

Anyway, we have a full day of stuff to do. It'll be nice to be outside. Tomorrow it will not be.

What I'm listening to - Friday, March 6th

2009-03-06T16:30:00.002-05:00

No real post today. Instead, I wanted to put out a list of what is on my iPod these days. Not that many people care, but I like to spread the music around and I tend to listen to less-mainstream stuff.

Eels - Beautiful Freak (whole album) It's sad and depressing at times, but I think it has everything a recovering cancer patient needs.

The Asteroids Galaxy Tour - Around the Bend - A happy reminder that things will be better, and in many cases, much sooner than you think. A little wacky 70's sound, but I like it. You might too.

The Offspring - Fix You - I think the title is self evident. It's a good song.

Linkin Park - Bleed it Out - Good, short song with a great beat. Might be their best song ever.

The Ting Tings - Great DJ - A flashback to the 80's that is just too damn catchy. The drums, the drums, the drums, the drums. . .

Eddie Vedder - Rise - Short and sweet and will probably make you cry. If you look closely, I put the lyrics in a previous post.

Against Me! - Thrash Unreal (whole album) - Lots of catchy songs, good positive messages, and lots of hard rock guitar.

The Trashmen - Surfing Bird - For the silliness factor. I mean why not? A little lightening of the mood never hurts, especially with everything else I've had to deal with.

Mike Doughty - 27 Jennifers - Solo work by the former frontman of Soul Coughing (who?). Good music, accessible, and just plain fun.

That's it for this week. Maybe if I get inspired, I'll do more of these. I have a 5000 song collection.

Friday I'm in love

2009-03-03T19:43:00.002-05:00

So they gave me stuff at the Radiation Oncology office for my throat. It works ok, but I'll still probably end up on a mostly smoothie/frappacino/milkshake diet for the next week or two. The place it hurts is kinda hard to get the numbing liquid to without drinking a bit of it. I'll have lots of time to practice this week, as my throat won't have time to heal until the weekend. They gave me Friday off to let it rest a little before I finish up treatment next week. My back is also feeling funky, so most likely the radiation "burns" are starting to make their appearance. It hasn't turned red yet, but I still have 7 more radiation treatments to go. We'll see how it goes, play it by ear, etc.

Enough about my health.

Thursday we're going to pick out my Tux for the wedding and start that process. It will require a few trips to get all the groomsmen taken care of, but what else do I have to do in my spare time? Pretty much nothing at the moment. We've also gotten our invitations taken care of (mostly) and those will be going out soon. Bleh. If the wedding don't kill me, the whiskey (now part of my liquid diet) will.

Talk to y'all later.

The hardest to learn is the least complicated. . .

2009-02-28T10:21:00.003-05:00

I have to relearn my job. There are things that I have forgotten since being out of the office, and it's become apparent to me this week that there is much catching up to do. I just have to make sure I still take it easy instead of throwing myself into the fire and grabbing 10,000 things to do, which I'm very guilty of doing in the past. This time, I come first, the work can wait. Whether the nice folks at BU want to hear it or not.

My throat has started to hurt. The doctors told me it would, and it has. I've found that a few advil a few hours before I eat will take care of the discomfort, but it wears off over time (I can only take 6 advil a day) and the throat starts to throb again. It doesn't really hurt unless I swallow, and even just swallowing water kinda hurts. Damn you Sirens of Radiation Oncology! Other than that, which will be addressed by my radiation oncology team, I'm not really showing any other side effects. I haven't lost any hair, I'm not really burned. but I am tired as all hell.

Tonight Ti and I went out for Mexican food at a really good place near the condo. We got a pitcher of Sangria, some chips and salsa along with fresh guacamole. Dinner was pretty good as well. I miss what we used to do. I'm taking the adjustments slow because I need to be careful. If I get sick, there's no telling how it will be at this point.

I talk to you y'all later. Time for more pills.

I'm Tired

2009-02-24T22:09:00.004-05:00

Chemo made me sick. It made me feel so horrible that I'd just sleep so I didn't have to feel it. I was tired, and the chemicals pretty much wrecked me in ways I have forgotten in order to maintain sanity, but now I have a new enemy. I call them the "Sirens of Radiation Oncology". They're all young, attractive radiologists who lure me into their lair, and when I'm laying down and helpless, they zap me with X-rays repeatedly. These X-rays didn't seem to do much the first few days I was zapped, but they're quickly taking their revenge on me. I am SOOOOOO tired. I can't get out of bed in the morning, I'm tired all day, and even sleeping, which isn't going so well in itself, doesn't even touch the depths of my tiredness.

They warned me there would be fatigue. They just didn't say that I would be this tired. I'm managing as I can. It sucks, but it's only going to be a few more weeks.

The other side effects are starting to show up as well. I have a lump in my lower throat, which is at the top margin of my radiation field. I have rinse for it, which helps, and I'm hoping this is as bad as it gets. I know that won't be the case, but I'm hoping. My back is tender and probably starting to show signs of radiation burns. I dunno, I can't see it.

Ugh. Enough complaining for the evening. Almost time for bed.

Walking downhill + Ice + Strong Winds = Ice Skating to Work

2009-02-23T21:24:00.002-05:00

Imagine me walking down a hill. Now imagine the hill has lots of icy patches on it. Now add in a very strong, constant wind blowing down the hill. I basically skidded down the hill to the train station this morning. Believe me, it wasn't a "Wheeeee!" moment. It was an 'Oh Sh!t!" moment, as I thought I was going over at any moment. I didn't, but I have pretty much every winter since I moved to Brighton. Once was while I was on my way to the airport and had luggage. Fell right on my ass.

Health-wise, I'm surviving. The radiation isn't killing me, but I think I'm starting to show side effects. It's pretty painless, pretty quick, with the only real obnoxious part being the daily trip to the hospital.

I occasionally feel overwhelmed with my life. It's not one specific thing, and I don't think fixing or removing one part will make the feeling go away. It's a combination of treatment, returning to work, the wedding, and an underlying frustration I have with lots of other small things. One of those is that I have problems sleeping. I'm not sure why, but I can't sleep through the night. It may be the root of all my problems, but I can't convince myself of that, and I've been through too much to think that a good nights sleep will solve anything. The fatigue I've been fighting off since December of '07 is starting to take its toll, which I think is the more likely suspect.

Eh, time to go make the donuts. I'll talk to y'all later.

B

The last Twinkie. . .

2009-02-17T21:32:00.002-05:00

Should I eat it, or save it as a commemorative and decorative food, like the piece of cake a bride and groom take home? I need to eat something when I take my meds later, so until then, it stays fair game to not make it past midnight. Unfortunately the Cadbury Mini Eggs have already suffered their fate and were eaten.

So you wanna hear about my day?!?!?!?!?!?!!?!

I went to work. I cleaned off my desk and answered a few email messages. I ate lunch and met with my staff to discuss my schedule. But not at the same time. I haven't worked my way up to "multi-task" yet.

Radiation is starting to hurt. I was queasy after today's treatment. I think tomorrow I'll eat something before going to see if that helps. Also, the areas where I'm getting zapped are a little sensitive. Feels like a sunburn, which they said it would. I just didn't expect it so quickly. However, due to my ability to encounter ALL side effects of a treatment, I'm not hugely surprised of the sensitive areas. I was just kinda hoping for it to be a week or so before I started having these symptoms.

Over this past weekend, Ti and I did a lot of wedding-related stuff. I bought my wedding ring, we checked out some things at stores we are either registering for or were thinking about for wedding favors, and we also had cake.

Well, enough about me. How was your day?

Big step today

2009-02-15T22:19:00.004-05:00

Today was "get my drink on" day. And I have, so far. I was definitely feeling it this afternoon - yes this afternoon - and Ti and I are doing a little more tonight. It's kind of a return to form if you will. That and I have a wedding in three months so I have to get myself ready for all the festivities that come with that: The shower (it may not be appropriate, but if I can, I'll tie one on), the bachelor party, and the days around and including the wedding. This is the payoff for the months of suffering and treatment. This is the start of my return to how life was before cancer.

A band I listen to has a song that the refrain is: "If she don't kill me, the whiskey will", and in my case, I'll substitute cancer for she. Ti doesn't like that so much, as she'd rather be on top of the list of things that are most likely to kill me. At the moment cancer is losing its standing. I'm just hoping for it to be a long moment. Like maybe 40 - 50 years.

Ah well, back to what we were doing before I decided to post. After all, the tequila won't drink itself.

Porkchop Sandwiches!

2009-02-12T20:40:00.003-05:00

So I started radiation today. It wasn't too bad; I actually fell asleep a little during the procedure. I wasn't comfortable, they kept turning the lights on and off, but because I couldn't move for about 20 minutes, I just drifted off. It didn't hurt, I don't think. I think I am feeling a little different in the areas that were zapped, but that may just be a figment of my overactive imagination. A ghost sensation if you will. I'm sure in a week or two it won't feel like that because the actual effects of the treatment will start.

It wasn't exciting, and I'm going to have to remind myself that I have to go every day for the next few weeks. Tomorrow's going to be difficult because it's Friday, I just got a new game for my Wii to play, and the appointment isn't until the late afternoon.

To help keep me on schedule, I go back to work on Tuesday, which will get me out of the house earlier, and put me closer to the hospital. So getting to B&W won't be a total pain in the ass.

So tomorrow is really my last day at home as well, which it won't be because I have to leave here around 2:10 - 2:15 to get my ass to the hospital. I won't get home until 5. This doesn't like much, and I've had enough sit-on-my-ass time over the past 6 months. And we have a long weekend, so there will be more sit-on-my-ass-time with Ti.

I'll talk to you folks later. I've got zombies to kill.

Ah, tomorrow

2009-02-11T22:11:00.002-05:00

Tomorrow I start the last part of my treatment. Today we went and they did the last minute tweaks and adjustments they need for the treatments. Tomorrow, they start zapping me. I'm not really worried or anxious about it. I've been through too much to even flinch at the thought of this right now.

Not much else to report. It's been pretty quiet.

Best thing ever

2009-02-10T22:24:00.000-05:00

Ti and I just watched the best thing ever.

http://whitestkids.com/

http://www.ifc.com/wkuk

Go there. Watch skits. Laugh. Now.

Day +100

2009-02-05T10:48:00.001-05:00

I made it. Now onto bigger and better things.

If there's a problem, yo, I'll solve it.
Check out the beat while the DJ revolves it. . .

Manah Manah

2009-02-04T20:35:00.002-05:00

Do Do Dee Do Do

Bear with me, I've had a few. Ok, two. But for someone who really hasn't touched much alcohol in the past 15 months, I think I'm doing ok.

Today we learned a few things. First, after spending 6 hours in the Radiology department, we learned that I'll be starting radiation next week. We have an appointment on Wednesday to finish up the scans they need to do to prepare me for the actual radiation treatment, and we're meeting with my rad onc to finalize the details. I'll have between 17-20 consecutive radiation treatments, starting next Thursday. I don't go on weekends, so it's consecutive weekdays that I'll have treatment. As my current onc nurse says, the worst part about the treatment is hauling my ass to the hospital every single day of the week for a month, so I don't expect too much by the way of side effects.

We also learned that most of my restrictions have been lifted. To celebrate, Ti and I went out and had beer and other food. I had moules frites (french fries and mussels), which were quite tasty, especially with the beer I had along with dinner. I really need to work my tolerance level back up. I have a wedding coming up. If two Belgium style beers (well, one was from there) can knock me around a fair bit, I can't imagine what the wedding reception is going to do to me.

I'll also be returning to work soon. Not sure yet, as I just found out today that I can go back, but probably in the next few weeks.

Later dudes. Off to go sleep, it's been a long day.

It's Monday, by Wednesday I'll X-Ray man

2009-02-02T22:12:00.002-05:00

Today we went to see the radiation oncologist. We discussed radiation, the downsides, the upsides and what exactly it means. After very little thought or discussion, it's been decided I'm going to be lit up like an X-mas tree for an hour a day, every weekday for a month. I'm not sure what to think or feel about the whole matter just yet. I'm too matter-of-fact about much of my treatment, and while I am a little anxious about it, it doesn't have the intimidation factor that the transplant had, or the possibility of horrible side effects like my chemo.

I'm still reeling from a family fight from over the weekend. I haven't the nerve to call my parents yet to tell them about the appointment today. I figure at this point I'll wait until Wednesday to tell them everything, because by then I'll have more details - we meet with the rad onc team again then. The fight was over the wedding and my mother's increasing involvement in the planning - which wasn't asked for, and was causing problems. I admit I didn't handle the discussion well, and it ended up being a screaming match. I am apologetic for how I behaved and acted towards her, but I don't feel I was wrong in getting angry at her. So the past few days have been awkward, and it ruined what could have been a good weekend of downtime for Ti and myself. She was coming home from a week away for work, and the whole fiasco set a tone for the weekend that made things very tense around here.

The above was written on Monday, but I hadn't posted it because I wasn't done with the post. Recently, many of the discussions Ti and I have had about the wedding have led to very bad things, and to be honest, on these occasions, it would be more comfortable if we were discussing explosive diarhea (as disgusting as it sounds, it is easier to discuss than the wedding at times).

While I did have more I wanted to write about last night, the inspiration has left me and I can't remember what it is I wanted to post. Maybe I'll remember the rest later.

Things NOT to do while wearing a mask and gloves

2009-01-30T14:28:00.003-05:00

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.

How did we get here?

2009-01-29T02:11:00.002-05:00

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

My future wife in New England

2009-01-24T21:18:00.000-05:00

http://ihasahotdog.com/2007/12/27/cold-cold-cold-cold/

Am I human, or am I dancer?

2009-01-22T23:07:00.002-05:00

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?

Uh-Oh Spaghetti-O's

2009-01-19T21:03:00.002-05:00

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

Next stop, pizza!

2009-01-14T15:08:00.002-05:00

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.

:)

What did we learn on the show tonight Craig?

2009-01-12T22:23:00.002-05:00

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.

Tomorrow's just your future yesterday

2009-01-09T17:04:00.002-05:00

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.

So. . . yeah, um. . .

2009-01-05T17:51:00.002-05:00

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.

Yum Yum

2009-01-03T18:19:00.002-05:00

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.

2008 no more!

2008-12-31T18:11:00.000-05:00

Happy New Year everyone!

Morning, grumble grumble

2008-12-29T09:56:00.003-05:00

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!

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

2008-12-24T13:07:00.004-05:00

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!

These are not the droids you're looking for

2008-12-19T19:09:00.002-05:00

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.

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

2008-12-17T21:46:00.003-05:00

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.

Home, again.

2008-12-15T14:50:00.002-05:00

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.

Ugh. The hospital.

2008-12-13T13:43:00.003-05:00

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.

The lights of Christmas

2008-12-11T21:07:00.002-05:00

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.

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

2008-12-08T16:53:00.003-05:00

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.

Quiet on the home front

2008-12-05T11:19:00.002-05:00

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.

Good Morning December 2nd.

2008-12-02T09:40:00.002-05:00

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.

Another trip to the Dana

2008-12-01T10:18:00.002-05:00

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.

Day after Black Friday

2008-11-29T11:36:00.002-05:00

So what does that make today?

I ate lots of turkey over the last two days. I have a feeling there will be more turkey in my future, well, I know there will be. Ti's making turkey soup and froze a bunch of the meat to use in turkey pot pies.

It came out really well for the first time she's cooked a bird that big. Lots of juice and flavor.

I'm still not recovering as fast as I'd like, and don't have the energy and drive I thought I'd have by now. But I'm not considering it a set back, just a little slowdown in my recovery.

I'm still having issues sleeping, and because of that Ti isn't sleeping so well either. I feel guilty about it, but there isn't much I can do. We've tried it with and without sleeping pills, with and without my anti-anxiety meds, but nothing seems to make a difference. Naps are a good thing.

Time to go make lunch. Ima getting hungry.

Ahh. Another Holiday, more food.

2008-11-26T18:17:00.002-05:00

Twas the night before Thanksgiving
And all through the condo
Not a creature was stirring, watching TV from the love-seat-o

Beh. I'm not going to keep going on with that. It's bad enough as it is.

Happy Thanksgiving to everyone. Eat lots of turkey, and remember to be thankful for something tomorrow, as difficult as the day can get. I have lots to be thankful for, so I'll be taking a moment in the morning, before we dig into the bird (we're eating early. really early), to be thankful for a few things.

Mostly thankful I won't be at my parent's house this year (oops, did I say that out loud?), and that my recovery from treatment is going as well as it is right now.

Talk to you all Friday, when I do my Black Friday edition of NS, R!.

My prediction, Detriot loses tomorrow.

Another Tuesday night in November

2008-11-25T17:39:00.003-05:00

Short post tonight. Not much to update everyone on. But I felt I should post some interesting facts about the side effects of the treatment I haven't posted before.

- My eyebrows have turned mostly blonde/white, and I lost a lot of hair up there. I pretty much know what I'd look like without them at this point.

- No nose hairs. You never really know what they do until you don't have any. It's weird.

- I shaved last Tuesday, and by the looks of things, I won't have a beard any time soon. A week out and I barely have anything on my face, or head for that matter. I haven't shaved that and the hair hasn't started to grow in yet.

I still have some scarring from a rash I came down with in the hospital. It is starting to go away, but not quickly. I'm taking a lot longer to heal from things than I was before.

Have a happy Tuesday evening. It's Thanksgiving, Charlie Brown is on tonight. Highlight of the evening, other than dinner.

Setbacks to left of me, jokers to the right but I'm stuck in the middle with you

2008-11-24T14:00:00.003-05:00

We went to the Dana today. Minor setback. Of course, with my counts racing back towards normal, it was bound to happen. After all, I am a medical anomaly who can't stay healthy for some reason. As Ti put it earlier today, if the doctors tell me that a side effect may happen, it happens to me. I'd like to think I'm not a hypochondriac, and as I can't possibly subconsciously cause some of these things to happen, I've decided I'm just unlucky. Anyway, to today's issue. Because I left the hospital with a little bit of a cold, that started to develop into bronchitis, I have developed some linger after-effects that just won't go away. It's not really a cold anymore, it's a respiratory problem that is caused by the dry heat in my condo, not drinking enough fluids, and the viral infection I was just getting over.

If I didn't have this damn cold/sinus thing, I'd be able to go into a store that was pretty empty. Today was my shot. I'm afraid that most places I might want to go will be too crowded for me starting next week. That and I do feel a little self-aware wearing a mask and gloves in public. Nothing says "SICK PERSON HERE" than a mask and a pair of gloves.

As my energy level and strength comes back, I'm starting to want to do more, go out and enjoy things again. But once I get outside, I realize that it's damn cold out, and that I should take the advice of every woman in my life that has spoken to me lately: Get your ass inside, rest and drink lots of fluids.

I've also been thinking about what to do about my head once my hair starts growing back. Should I keep it bald or let the hair grow back? I dunno. I'm growing the beard back, I feel naked without it. But my scalp, I'm not as particular about that as I used to be. It's strange. All of my whining and complaining about losing my hair, and once it does, I'm fine with being bald.

Anyway, I'm going back to watching TV and drinking lots of fluids.

Thank you everyone who has sent cards, email and words of encouragement. They are appreciated, and you'll be in my thoughts in the upcoming holiday.

I'll post later this week.

Ah, the weekend

2008-11-21T19:58:00.002-05:00

So it's Friday. I probably don't need to post as much as I have, but honestly, I have _nothing_ else to do. I have some games I can play, I have TV I can watch, and a few books to read, but I've got another 3 months of that to do after this one is over.

Because of that I blog. I don't expect many people to keep reading this too often, I'm just not that interesting and I don't have much to report except when I go to the doctors (and if there are any problems, but we're hoping we don't run into any). I will keep writing when I feel like it, but I probably won't update it daily as I have been.

On the plus side, it's been the coldest it has been in the area since last Feb, and I can't really go outside. +1 for SCT-imposed imprisonment inside the condo. -100 for causing lots of other issues that I won't go into, kinda personal and nothing I'd like to describe here.

Things are getting better daily, I'm getting a little better each day, although I'm apparently losing more weight. I'm eating, I swear. Just not that much.

Anyway, I'm going to make dinner. Talk to everyone later. Have a good weekend, and try to stay warm. It's going to be a very cold one.

No post today.

2008-11-19T09:48:00.001-05:00

Ironic, isn't it?

One week

2008-11-18T08:06:00.002-05:00

It's been one week since I came home from the Brig. Things are better at home, but overall, I think my physical condition hasn't changed much. Still not eating too much, still having some issues that haven't resolved themselves yet, still tired 99% of the time. I know my counts are making leaps and bounds, which gives me hope and exciting news to share with everyone, but I'm still moving around at a snail's pace and not able to get a full night's sleep. Luckily someone invented naps for fixing that problem, although I don't take them every day, as I probably should.

It doesn't feel like a week; it feels like I've been home a month already. I think it feels the same to Ti, which is weird, because she's relatively healthy, although she is as tired as I am, but for different reasons. Maybe while I was at the Brig, some weird time warp thingy was set up around my condo to slow down and screw around with time in here. Maybe it's the color of the walls or carpet. Maybe it's all of the meds I'm on. I dunno.

Anyway, I'm on day +20. 23 more days and I can eat food from outside. It's my next goal to focus on, since I can pretty much do everything else inside the apartment there were restrictions on when I came home. Except for cleaning; I still can't do that.

Talk to you folks later. Time to go forage for food.

It's beginning to look a lot like Christmas

2008-11-17T12:33:00.003-05:00

I've decided that I'm a superhero. Well, maybe not able to leap tall buildings in a single bound or stop a bullet or dress in tights wearing a special belt and cape, but a superhero anyway. My counts are through the roof. My WBC is 5.0, my hemo is 36.7 and my platelets are 180 (thousand). That means that since Thursday, I grew 76k platelets (per square whatever it is they use to measure platelets). I'm just going to assume that is a lot. So, I'm a superhero and my special ability is to grow blood cells. Maybe the stem cell growth will start to kick in some more and I'll to be able to fly, or at least float. I won't hold my breath on that one.

You may be wondering about the title. Last night, Ti and I watched "How the Grinch Stole Christmas" on TBS, so it's officially X-mas season. And someone on the news said it might snow this week. Might. I won't be outside, so I won't be affected if it does or doesn't. It may look pretty though.

After our appointment at the Dana this morning, we went for a drive to Castle Island in South Boston. It was cold, windy, but everything a shut in needed to appreciate nature and the fact we live on the ocean. It was great. Too bad I could only stand to be outside for about 7 minutes before sprinting (or fast walking - it's as fast as I can move at this point) back to the car. Fresh air, sunlight, the waves of the water and the rays bouncing off of them were amazing to watch while we were there. Eventually my chair was calling for me so we had to head home. That and I needed to start in on the 2 liters of fluids I have to drink today. So far, I'm in 3/4 liter for the day.

Maybe if it is somewhat "warm" later this week, we'll be able to go back out somewhere so I can get some more fresh air. Or we'll have to go to Home Depot and buy one of those portable propane heaters.

Every day that passes is one more day closer to me getting out of here and back to enjoying life again. Not that it isn't great sitting around all day with my computer in my lap in front of the TV, but it isn't everything I need in life. So I'll keep reaching for those goals and moving forward, towards the day I can say that I'm through with this stupid disease and everything that came with it.

Morning Zen

2008-11-16T08:44:00.002-05:00

I got a bad disease,
Up from my brain is where I bleed
Insanity it seems,
It's got me by my soul to squeeze

Well all the love from me,
With all these dying trees I scream
The angels in my dreams,
Have turned to demons of greed, thats me.

Where I go I just dont know,
I got to, got to, gotta take it slow.
When I find my piece of mind,
Im gonna give you some of my good time.

Today loves smile on me,
It took away my pain said, "Please
Oh let your ride be free,
You gotta let it be, oh yeah."

Where I go I just dont know,
I got to, gotta, gotta take it slow.
When I find my piece of mind,
Im gonna give you some of my good time.

You're so polite indeed,
Well I got everything I need.
Oh make my days a breeze,
And take away my self destruction.

- Red Hot Chili Peppers, "Soul to Squeeze"

Nothing

2008-11-15T18:31:00.002-05:00

Nothing new to report today. I guess that's how it will be for awhile, and to be honest, I'll be happy if it stays that way for a few weeks. I don't have much energy and could probably sleep all day, but I don't want to.

The prison Ti and I now live in isn't getting to me yet, I know it'll get to her before too long if it hasn't already, and I feel bad that she has decided to stay here with me for the first month. The walls, bars, darkness and small space already got to me during ABVD - I got stir crazy after 2 months of staying home 5 days a week (on average), but since I know I can't get too far, I'll deal with it. I took the recycling out today and got winded. I'll accept my limitations. But she doesn't deserve to be stuck here in this personal hell. But she will be and I love her for it, even though we'll have some rough moments because of it.

I may not post anything tomorrow, but I will on Monday. We're going back to the Dana for another follow-up appointment. This time I'm going to ask if I can shave. I need to.

Have a good Saturday night.

Bleh. Bronchitis

2008-11-14T09:10:00.002-05:00

Apparently I'm coming down with Bronchitis. I've been put on antibiotics for it, and should be ok in a few days, but until then I'm occasionally having coughing fits. Yay for coughing fits.

I'll report more later. If there is more to report. Otherwise, another day in my chair in front of the TV.

By the way, it's Day + 16

Baby steps, giant leaps, whatever

2008-11-13T15:53:00.003-05:00

So after my breakdown yesterday, I've recovered and moved onto bigger and better things today.

We had our first followup at the Dana today, to figure out how I'm doing and see where this is all leading. Apparently, I am ahead of the curve in some aspects, and am recovering pretty nicely. My platelet count was 104 (thousand), which means I can brush my teeth. It may not mean much, but to me it means I've climbed that step on the ladder of recovery. I've even surpassed the level where I can resume some level of normal activity, like doing light housework, except that my RBCs still have a little catching up to do, and I still need to get my physical strength and stamina back. Them telling me I can brush my teeth was the best news I could receive today. I can also cut back on a few of my meds, and in a week or so, I'll be off of one of them entirely.

Tonight the Pats play, and my goal is to make it to halftime. I'll probably TiVo the 2nd half so I can watch it tomorrow.

Today is a good day. I'm going to enjoy the rest of it.

Not as strong as I thought I was

2008-11-12T15:21:00.003-05:00

Pardon the panicked and not-too optimistic post today, I am only human.

After thinking about what I was just subjected to, which is strange considering I had 3 weeks in the hospital to think about it but didn't give it a second thought after I walked through the door, I just realized how dangerous and scary a procedure I just went through.

So I willingly walked into the hospital, and let them give me enough chemo over a short enough time to kill me. I know the end result is a long and happy life, blah, blah, blah, but just for one moment, I'm going to freak out and just be a little wacky over this. It was and still is kinda traumatic.

Now the doctors will tell you in all confidence that the procedure is "safe" and "routine", but realistically, how many people go through it every year, and what are my chances of survival because I went through it? Will the change in lifestyle I go through over the next few months (not to mention the changes in Ti's lifestyle as well) be worth it in the end? I'm not sure at this point, and we'll have to wait to get my 5 year all clear until I'm comfortable with it all (at least deep down inside).

Now let me compose myself for a moment. I'll even let you in on a secret. I've managed to keep up my spirits and strength because I knew I had to, otherwise I wouldn't have made it this far. From the initial reactions of my family, Ti, and some of my friends upon my diagnosis, I knew I had to be the one to keep a level head when the world around me was spinning so fast and my life took a dramatic turn. I had to be the one to absorb and learn as much as I could without being intimidated or frightened by what I read, so I could be as informed as possible - and as cliche as it is, knowledge really is power. I had to keep myself together when the chemo brought me so low and there didn't seem to be much of a reason to get out of bed in the morning, but I still did. But I mostly did it because no matter how much support and love I get from all of you out there (my friends, my family, everyone at BU, and most of all, Ti) this is my burden, and I'll be dammed if I don't go down without a fight.

I guess that answers the question why I went through the transplant, and calms me down a bit. And I guess that will be the answer for whatever else awaits me down the line.

Talk to you tomorrow.

My rules for living

2008-11-11T20:49:00.003-05:00

So I made it. The long 21 day journey is over. I had many bumps, bruises, rashes, sores, and other nasty things happen to me during my stay at the Brig. I found out earlier today that the nurses were worried about me last week because apparently the reactions I had during the SCT were some of the most severe they had seen, and I was doing much worse than the other transplant patients. I guess there was one benefit to staying in a room by myself where I can't see how the others were faring. I spared many of the nasty details from everyone in my posts because I can't even start to think about them without getting a little nauseated. Lucky for me I have drugs for that, you all don't, so I left out the details of the events that only Ti, myself and my nurses were fortunate enough to witness. If anyone is really, really interested, you can ask me later.

Anyway, here is my list of restrictions. Some are only for 30 days, some are until the doctor tells me otherwise, based on my blood counts. Some of the restrictions I have are for a year or more (like no soft serve ice cream).

1. No sick people - this is more of a long term thing until my body is back to fighting strength. What this means is if someone wants to come visit me and they're fighting a virus, I can't let you into the condo. I also can't take public transportation or go into stores or anywhere there may be sick folks. So I pretty much can only be at home, outside in the fresh air, in the car, and at the clinic. It's funny how they make me go to a place full of sick people for follow-ups.

Ironically, I caught a cold in the hospital a few days before they let me go home.

2. Only food prepared at home or pre-processed foods. Sorry folks, you can't bring me things you made at home to eat. Or a bucket of chicken (sorry Mike). This limitation is only for 30 days or so, if things go as planned. Ti has been given a list of food-prep instructions and we have a list of things I can/can't eat. If food has been left out for 30 mins after being cooked I can't eat it. :(
Strangely enough, if someone wants to stop by with an economy sized box of Twinkies, I can gorge myself on all of that unnatural goodness. I can't eat fresh fruits or vegetables, with a few exceptions, but not many. Twinkies 1, food I should probably be eating 0. This whole cancer thing doesn't make any sense.

3. Rest, try to eat, drink plenty of fluids, and take the 10 pills a day I now have to take. I have to drink 2-3 liters of fluids a day, or risk dehydration and end up back in the hospital. I also have to try to eat. I lost about 20 lbs between the time I checked into the hospital until leaving today. My appetite isn't anywhere near where it was, but I'm trying to at least maintain what weight I still have. Fortunately for me, I went in a few lbs heavy, so I'm not really getting near skeletal. And then there are the pills. But enough about that for tonight. I'm tired.

That's pretty much it for the major rules I have to live by for the next few months. Of course there are lots of little things I have to do (take my temp every few hours, wash my hands frequently - even at home) but I don't want to bore you.

Good night. I'll enjoy sleeping in my own bed.

And. . . exhale

2008-11-11T08:11:00.002-05:00

HOME.

4:02 update

2008-11-10T16:02:00.001-05:00

My temp is 98.9 deg at 4:02 pm on Monday!

It went down on its own. Tomorrow is in sight.

It's kind of a drag

2008-11-10T11:08:00.003-05:00

I have a fever. And a cough. Because of this they're not letting me go home today. So it's another day at the Brig. Not that I don't absolutely love it here, I just want to get back to my own bed, my own chair, my own shower. I will miss the unending source of meds they have here, but I'd rather be home, not needing the meds, recovering on my own pace.
To wrap up what my body has gone through while here: 4 days of high dose chemo. Followed by about 16 days of not eating much due to various reasons. 7 days of mucousitis - one of the most uncomfortable and disgusting things I've even been through, and now a viral infection, accompanied by a fever.

The good news is that my hickman catheter is coming out today. Any other drugs they need to administer they'll do through my other port. It hasn't been feeling the love lately anyway, so it'll be good to get that flushed.

Not so happy today, a little dejected because my own body isn't working towards the cause. Even though tomorrow is my scheduled release day, I was hoping to jump this joint early.

Temperature at 11:30 a.m. 99.3 deg