Wednesday, December 31, 2008

2008 no more!

Happy New Year everyone!

Monday, December 29, 2008

Morning, grumble grumble

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

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

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

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

Happy New Year all!

Wednesday, December 24, 2008

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

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

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

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

Friday, December 19, 2008

These are not the droids you're looking for

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

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

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

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

Wednesday, December 17, 2008

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

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

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

Monday, December 15, 2008

Home, again.

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

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

Saturday, December 13, 2008

Ugh. The hospital.

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

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

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

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

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

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

Thursday, December 11, 2008

The lights of Christmas

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

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

Monday, December 8, 2008

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

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

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

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

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

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

Friday, December 5, 2008

Quiet on the home front

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

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

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

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

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

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

Tuesday, December 2, 2008

Good Morning December 2nd.

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

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

It's going to be a good day.

Monday, December 1, 2008

Another trip to the Dana

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

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

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

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

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

Saturday, November 29, 2008

Day after Black Friday

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.

Wednesday, November 26, 2008

Ahh. Another Holiday, more food.

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.

Tuesday, November 25, 2008

Another Tuesday night in November

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.

Monday, November 24, 2008

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

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.

Friday, November 21, 2008

Ah, the weekend

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.

Wednesday, November 19, 2008

No post today.

Ironic, isn't it?

Tuesday, November 18, 2008

One week

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.

Monday, November 17, 2008

It's beginning to look a lot like Christmas

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.

Sunday, November 16, 2008

Morning Zen

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"

Saturday, November 15, 2008

Nothing

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.

Friday, November 14, 2008

Bleh. Bronchitis

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

Thursday, November 13, 2008

Baby steps, giant leaps, whatever

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.

Wednesday, November 12, 2008

Not as strong as I thought I was

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.

Tuesday, November 11, 2008

My rules for living

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

HOME.

Monday, November 10, 2008

4:02 update

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

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

Sunday, November 9, 2008

Slightly Imperfect, but I'll take it

My WBC is up to 6 today. It's in the normal range. I'm not sure what my other counts are, but they must be doing ok because I don't need a transfusion today at all. I'll have the nurses put them up on my chart at some point.

So tomorrow is the big day, barring any problems. I have had fevers the past few days, and they've taken all kinds of blood from me for cultures to make sure I'm not coming down with anything horrible. The past few times, they've just drawn blood from my catheter, but today they also drew from my arm. No problem.

My nurses think I may have caught a cold, as I've been coughing, blowing my nose, etc for the past few days. No idea where I got it from, but I should get over it.

Now that I'm about to head home, I'm nervous and scared. I'm also hopeful and optimistic, and am looking forward to getting back to living with Ti. I'm not sure yet, but I'll probably have a PET scan within a few weeks to see how things look. I'll be a little unsettled until we get the results of the scan. With everything I've been through, the damn thing better be negative. The holidays won't be the same, and I don't know if that's such a bad thing. This year will give Ti and I a chance to start our own traditions, and not have to deal with the pressures put on us (especially me) by our parents/families to be involved in their traditions.

I'm not sure what getting back to a "normal" life means yet. In time, I'm sure I'll settle into what I can consider one to be. For whatever it means, I'll be living day-by-day for quite a while, taking each challenge or happy moment as they come. The only long-range event we'll be looking forward and getting ready for is the wedding.

I'll talk to you folks later.

Saturday, November 8, 2008

Short Post today

My WBC is at 3.01, up from .711 yesterday. If this keeps up, I'll be back to full health in no time. For those who don't know, most healthy people's WBC is between 4.0 - 10.0.

I may be home Monday.

Have a good weekend.

Friday, November 7, 2008

Day +10 - My future's so bright, I've gotta wear shades

My white blood count is up to .711. Yesterday it was at .25, which means my body's done a little healing overnight. Today I feel good. Better than I have in a few weeks. No mouth sores, but I still have a sore mouth. I'm officially off of the morphine pump, but apparently I developed an addition to it and am suffering withdrawal symptoms and require taking oxycodone to ween myself off.

Besides that, I've just been doing some thinking about my situation (nothing bad) and trying to figure out what's next. As far as the medical portion of the SCT is concerned, I'm done. They have discussed discharging me as early as Monday. Initially they said Tuesday, but my numbers are looking good and all systems are set to go early. I've always been a bit of an overachiever.

Well, it looks like this leg of my journey is over. Next stop: home.

Depending upon the weekend, I may or may not post another entry. I'll have time, so I may put one up, but most likely there won't be any important updates for a few days.

I'd like to thank the following people (in no particular order):
The nurses and Doctors at Brigham & Womens hospital for taking care of me and making sure the SCT went off as smoothly as possible and that I got everything I needed.
My friends for giving me all the support and strength I needed to get through the last 21 days, and plenty more to get through the next 4 months
My extended family at BU, for being there for me, and showing me that I am more than someone who just works there. I can't wait to get back and thank everyone in person.
My mother and father, for being here.
My fellow cancer warriors, for keeping the fight going, by doing something as simple as getting up in the morning. Each day is a victory.
And last, and most important, thank you to Ti. She knows everything she has done for me. And I could never repay her back. Even if I could, I don't think she'd want me to anyway. First goal reached, next goal, the wedding.
If there is anyone I forgot to thank, well, thank you too. I didn't do it intentionally, it's just hard to write while I have to blow my nose every two seconds.


Good night everyone.

Thursday, November 6, 2008

Good News, bad news

Good Morning folks,
I know its been a few days since I last posted, and I didn't have much to say. Well, I still don't have a ton of things to write about but I do have some good news. I got my last batch of blood counts, and my WBC jumped from .12 yesterday to .25 today. This means the sores in my mouth are going to heal up pretty quick (they already started and are much better than they were two days ago). Last night I ate my first solid food in almost a week - macaroni and cheese. I'm tempting fate again this morning and am having French Toast along with transfusions of blood and platelets (the counts on both of those are a little low today - nothing to worry about).
The majority of the sores in my mouth and throat are gone, with the exception of a few spots that have been worn raw. One is on the side of my tongue. It hurts like hell. I have two other spots in my mouth that are also raw but don't bother me so much when I talk or swallow. The viscous lidocane I have will come in handy today.
The bad news today? I am going to be very f*cking busy. I am being visited by the nutritionist to discuss home nutrition, the pharmacist to go over the pills I have to take when I get home, the overall transplant coordinator to discuss ??? The Phys Assist that I have been working with is also coming by to talk about some other stuff too.
I also have a meeting with the mindfulness study folks today, and then to wrap it all up, if we're all wrapped up by then, my parents are coming by.

Ugh. Wish me luck. I have a feeling I'll need to recover tomorrow, and maybe work back up to solid foods.

Tuesday, November 4, 2008

I have become comfortably numb

Tonight I was introduced to the most wonderful stuff: viscous lidocane. It is a gel that comes in a small cup, and with some swabs, I spread it around my mouth over the sores and other areas where its painin. Within a minute or two it all becomes numb and nothing hurts. It seems to last for a little while as well. I also have a mouth rinse with the same stuff that I'll try before bed tonight. The down side to all of this numbing/morphine is that I can only concentrate in very small bunches , for a few mins at a time.

I'd like to give a congrats to Bekah on her response to the drug trial she's on. Her story is here, and she is one of the other bloggers I follow because she is always bright, cheerful and a contant ray of hope, no matter how bad things get for her.

I also want to thank everyone who has sent me movies, cards and pictures over the past few weeks. I appreciate the thought and I was moved by how much support I'm getting from everyone.

I'm going to log for the evening, as the morphine/lidocane/whatever other pain numbing meds I'm on are kicking in and I'll probably be passing out in 10 mins or so.

Thank you all.

Sweetums go night night. . .

Election Day - Day +7

It's been a week since the transplant. I'm once again 7 days old. My counts are slowly starting to improve, but I still have much healing to do. The sores in my mouth and throat should be getting better, except they're not. Over the past few days I've been straining my throat and mouth while talking. Mostly on days my parents are here, and then I spend that night coughing up phlegm and blood, and when I "wake" up the next morning, I can barely get a whisper out.
I'm not going to go into any details over what has happened over the past few days that is causing my mouth and throat to slow down their healing. All I can say is that my overall health won't be improving until I can at least attempt to start eating solid food. Physically, I'm on track to be recovered by next week. Mentally and emotionally I'm struggling with some setbacks.

I'll post more later, I can't focus at the moment.

Sunday, November 2, 2008

It's hard to bargle nawdle zouss with all these marbles in my mouth

Today is got to be the worst day so far. I'm warning everyone now just in case the following description of my problems turns someone off. It's not pleasant, it's not pleasant to experience, and if that's going to be an issue, wait until tomorrow's post instead of reading on.

The sores in my mouth have gotten larger, and a few more have popped up. The insides of my mouth are swollen, but my tongue has decreased in size, thankfully. My throat is raw and covered in open sores, which makes swallowing anything feel like its sandpaper. Even water (or my own saliva) hurts like hell. Fortunately, if I don't talk or swallow often, the morphine is doing an adequate job in controlling the pain. I hate the changeover times, because when the new nurse comes on, she asks about 100 questions. And I can't f*ing talk right now. I think for the rest of the day I am going to keep a notepad next the bed, and any time I get asked something I'll write the answer.

The PCAs (personal care assistants) are mostly great, occasionally I'll have someone come in whom I've never seen to take my vitals, and since I'm sure they don't know my condition, they jam the thermometer right under my tongue - where the mother of all sores lives.

In addition to the sores, I'm having a little bit of a phlegm problem, which one of my nurses said is another common side effect Occasionally I do have to cough up stuff, which has been mostly red/dark red for the past two days. It makes me feel better for a while after I do it, but before I do it, my throat feels like it's closing up and is on fire. In addition to the phlegm, I've been coughing up a little blood. Apparently no one is too concerned about that problem at this point.

Lucky for me my counts are about as low as they can go - I think they're at 2 (or .02 for those who know what the white counts are). I'm also at day +5, so my stem cells should be taking hold and start doing their thing. There may be one more day of really low white counts before they start going back up, and then the sores will go away and I'll be able to go back to eating and drinking normally.

It does appear that the past few days have been a real test and have altered my personality a little bit. I figure I'm allowed as I haven't slept more than three hours straight, haven't been able to really swallow without pain in almost a week, haven't eaten any solid food since Thursday morning.

I want to thank everyone for the cards, movies and other stuff that has been coming in the mail over the past week. I'd also like to thank Dan, Kerry, Bob and Marie from BU (and everyone else who contributed) for the gifts. Everything I have gotten has been precious and is the bright side to all of the misery I've been going through. It's not the stuff, but the showing of support that I've gotten from everyone. I appreciate it. I just wish there was a way I could show it.

I'm going to go nap now. Typing, reading, and listening to football is taking a lot out of me. Damnit.

Friday, October 31, 2008

Ahhh, Halloween

This may be my last post for a few days, as the pain is getting a little excessive, and the morphine they're giving me to manage the pain pretty much leaves me in a half-asleep state. Today I'm getting a PCA pump which will allow me to control how much morphine (or maybe fentanyl) I'm administered. The pain is from my mouth, which is full of sores, and my tongue, which has swollen to most of the size of my mouth. Eating solid food is completely out at this point, so I'll be on a liquid/Popsicle diet for the next few days. I'll start stocking up on the Boost and Ensure from downstairs so I can "eat". Because of the swollen tongue, I'm also drooling a little. My nurse Emily set up a suction tube for me to take care of the extra saliva. I've stuck it into my mouth a few times already and it doesn't pull to hard, so it doesn't hurt at all to keep myself "drool" free.

I had a fever last night - got up to 101.2. Because of that I had to give blood and urine samples for cultures, and this morning I went for an x-ray of my chest. I got to leave the room. Not much to see on the way, but hey, I was out of the room for 20 minutes. The fever broke during the night, and my temp was back in the low 99s this morning. The nurses told me to expect a fever or two, and of course I'm going to experience all of the expected side effects. Thank you Tampa Bay for ruining the Christopher Walken SNL skit forever - the damn fans were shaking cowbells during the ALCS and WS.

The remaining hair I have is starting to fall out. The stubble from my beard and head that has grown in the past few weeks is coming out as well - and even my eyebrows are starting to fall out slowly.

Ti told me about the overwhelming amount of responses she got to the blood donation request. I'd like to thank everyone for getting back to her so quickly and for the offers to donate. Even if you aren't my type and can't help me directly, the blood banks always need blood for patients like myself. I've already gotten 4 pints of blood, and will probably need more, as well as platelets. On my floor there are 5 or 6 other transplant patients that will benefit from any blood donated to B&W. Anyone donating elsewhere, the blood banks and hospitals can definitely use the blood this time of the year, as we're getting into the cold/flu season and all kinds of folks will be hospitalized. The amount of response once again, has turned me into a blubbering idiot, and it's a little harder to cry and blow my nose with a really swollen tongue, but it's worth it.

Thank you all. I appreciate it, as will anyone else who benefits from the gift of life you've donated.

Happy Halloween to all, I hope the Great Pumpkin brings you want you want tonight.

Wednesday, October 29, 2008

Day +1

Not much to report today. I've just been tired. Ti is here visiting, and the first hour she was here I could barely keep my eyes open. It's better now, and I'm more awake and alert, but if this is a preview of more things to come, I'll be sleeping through the next few days. That means I may not be updating the blog or playing on Facebook. The pain in my mouth has spread to my throat. Not too bad, but painful enough that I need a few oxy before I want to attempt to eat. Fortunately I still have an appetite, just starting the lack the ability to eat.

Today is the anniversary of the day Ti and I started dating. It was 3 years ago today that we consider our official start of "being together" in that way. Yeah, you all know what I mean. And no, Mike, not in that way. So happy anniversary Ti. I love you, need you, and am grateful every day that I wake up and you're still with me. At this point we've been through enough together to fill a lifetime. There's no one else I would have rather gone through the past 12 months with, as hard as they have been. And I know you'll be there at the end of this, when I have my first (of many) post-cancer celebratory beers, to make sure I get my sorry, drunken ass home safely.

Off to think about dinner. . . Talk to you soon.

Tuesday, October 28, 2008

And the water breaks as I bring my head above the surface

The transplant is done. It was about as exciting as a routine dental exam. They came in, and instead of connecting me to a clear bag of solution, they connected me to a bag of something that looked like light grape juice, which were my stem cells. To me, it was an exciting and signifying moment in this whole process; to my nurse it was just like hanging a bag of saline. Except they take a few more precautions, as I noted in my earlier entry, and they know the importance of the liquid in the bag. I found out afterwards, much much afterwards, that they have a special syringe they would use in case any of the contents of the bag dripped onto the floor; damn the risk of infection. To me, these cells are worth their weight, well, worth more to me than almost anything on this blue and green planet we all reside.

They represent my hopes, dreams and most importantly, my future.

The next steps are tricky, and will involve much more on my part than my nurses and doctors. The high-dose chemo I just had destroyed my bone marrow. Because of this, my blood cells aren't being replaced, so as they die off there aren't more to do their job. As my cell counts drop to zero - my red, white and all other blood cells will drop to basically a zero per cc ml count - i will become the following: neutropenic, anemic and highly prone to infections caused from outside and INSIDE my body. It sounds scary, it is horrible to think about it, and I'll be completely honest, I'm a little terrified about what will happen over the next 10 - 14 days. But, on my side are the doctors and nurses who will be keeping a really close watch on me and try to make it as tolerable as possible.
Notice I didn't say painless, because most likely I will be in a fair bit of pain. As I said in my earlier post, my mouth hurts, which is only the start of the process. Read up on the neutropenia for why. Google mucousitis for more information on that side effect as well. I'd describe it for everyone, but it's even enough for me to not want to think about it for the time being.

Anyway, I have good news. The stem cells, the liquid gold they put back in me today, will be taking hold in my bone marrow. Somehow they know where in the body to go, and what to do when they get there. Once the stem cells get into my bones, within a few days from now, they'll start multiplying and replacing my depleted marrow. Which means a day or two after that, after they've multiplied and done whatever else it is they do, they'll start to make new cells for me. New life. Starting over, this time hopefully with a clean, cancer-free slate.

Well, I've made everyone cry enough for tonight. Now my journey begins. Don't worry about me over the next few days. I'll make it through it fine. It just won't be easy, but then again, nothing ever really worth having in life ever is.

Day 0 - The first day of the rest of my life

Today the smallest thing is making me well up. It could be the importance of the day, it could be the fact I got about 4 hours sleep last night (again), I dunno. I had 2 pints of blood (Thanks Karen! for yours) which took until 2:30 ish to administer, and then they had to do all kinds of checks on me last night for reactions, so me and my rash settled in to sleep sometime after 4 am. To be fair, I probably caught a few quick cat naps while I was waiting for this, that and the other thing.

My mouth feels like I got punched by Mike Tyson from Mike Tyson's Punch-Out! They gave me some pills for that. My mouth feels better now. A preview of things to come, I'm sure.

As I type, my nurse, Nancy (who has been great, as have all of my other onc nurses here at the Brig so far), is putting what she calls "umbrellas for a sunny day" all around my room for the procedure. Not to make me paranoid or worry or anything like that, but just to be ready for anything. And as I've learned here the past week, I'd rather be prepared for anything than suffer needlessly because something was looked at and someone decided "Eh, nah we won't possibly need that".

I'd like to thank Mike, Karen and Gregory for all of their support. I'd like to thank all of my friends for their support as well, and as I said before, your support is what I use to build up the stregnth I need to get out of bed in the morning. But Mike and Karen especially have gone above and beyond anything I could have expected from them. Thank you very much for everything. Ti and I will have to name something "Mercado" at some point to make up for it; first-born, dog, lawn-mower, i dunno.

Anyway, so I can stop crying like a ninny - what the hell is a ninny? I'll wrap this up so I can eat breakfast and maybe shower before the big event.

If I am able, I may update the blog this afternoon.

Monday, October 27, 2008

. . .

Such is the way of the world
You can never know
Just where to put all your faith
And how will it grow

Gonna rise up
Burning back holes in dark memories
Gonna rise up
Turning mistakes into gold

Such is the passage of time
Too fast to fold
And suddenly swallowed by signs
Low and behold

Gonna rise up
Find my direction magnetically
Gonna rise up
Throw down my ace in the hole

Frogs, Bone Snatchers and 8 Heads in a Duffel Bag

So yesterday I had a panic that I wouldn't make it here another 14/15 days. Then last night I developed a rash from one of the medicines I'm on. They usually give Benedryl to combat the rash, but as it turns out, I have a reaction to that too. Hopefully the rash will go away sometime today, and I can get back to being a pin cushion for the folks here.

I get off of my mesna today, so today may be the last day I "have" to be attached to my IV stand, what I call "The Beast". It means I can go into the bathroom alone and don't have to remember to unplug ourselves from the wall before moving around the room. And it's one more step closer to getting out of here.

Ti made me a Hospital day tracking chart, with lots of symbols on it (football for Sundays, a Jack-O-Lantern for Halloween, etc), and hopefully once we get there, it will remind me that there are less days for me to be here than I have already been. But we have to get to Friday for that.

Today is Day -1. Tomorrow I get my stem cells back, and I have two weeks from there before I leave the hallowed halls of the Brig.

Friday, October 24, 2008

Hospital, Day -4

Well, I officially don't think I'll make it here 21 days without going insane.

I've named my metal chemo stand "The Beast" - it's where all of the assorted chemo/saline/other drugs hang for the duration of my treatment. I've been attached to it (by my Hickman Catheter) for the past three days, and it will be my constant companion for at least two more. I take it everywhere I need to go, which in my case, is just between my bed and the bathroom, since they don't let me go anywhere else. Hopefully next week I'll get to leave my room. By this point I'm getting sick of the imprisonment this disease has caused, whether it be at home or here.

I am on my 5th of 8 chemo cycles (twice a day for four days + 1 day of fluids) of Etopiside, Cytoxin and Gonnakickmyassimide. If I hadn't written it before, I get it at noon and midnight over the four days. I get to sleep about 3 straight hours, from 4 am - 7 am. I get cat naps when I can, but I don't like to sleep much during the day, as I have one of the only views the hospital has to offer, of two trees on Binney Street. That and during the day the attending doctors make their rounds, and I get visits from all sorts of folks. Naps aren't much of an option when the sun is up.

Anyway, I think my lunch is here, and I'm hungry. I'm getting used to this room service deal they have here. Sorry Ti.

Thursday, October 23, 2008

There are 7 types of mole sauce

Apparently, there are 7 types of mole sauce. You can read about it here. I probably shouldn't be watching the Food Network while I'm here, I can't get most of what I see. But there really isn't much else on in the middle of the day.

So the chemo isn't making me too sick right now. The drugs they're giving me seem to be controlling that. They started giving me Lasix, which is an extreme diuretic. Within 15-20 minutes of getting it, I start the routine of getting up, going to the bathroom, settling back in bed for about 3 mins then getting back up to go to the bathroom again. I'm going in liter increments; I really wish I was kidding. This may be TMI, but hey, I warned everyone in the first post. I get about 6 L intraveinously daily between the chemo and saline, and they expect to get about that much out.

The nurses have been great so far, but because of my chemo schedule, they're in here at odd times. I won't see them for 3 or 4 hours, and then it's non-stop changing tubes, bags of stuff, taking my temp, blood pressure and heart rate. It's still hard for me to think that I'll be doing this for three weeks, but I'll get used to it. Unfortunately for Ti, I may buy some hospital gowns to bring home (just kidding).

Well, to wrap this post up, I wish everyone the best. I may not be seeing too many of you for quite a while, and some of you I hadn't seen much at all in the past year. We can fix that once this is all over.

Wednesday, October 22, 2008

It's 5 o'clock somewhere

Good Morning folks,
So I survived my first night at the hospital. . . sort of. I slept off and on for about 6 hours, waking up when I rolled onto my catheter, waking up when I had to roll over to get comfortable, and just getting used to the room here at the Brig (that's what I'm calling it). The nurses are nice so far, except the one that came in at 5:40 to take my vitals. From that point on I decided to stay awake in case they come in for any more poking/prodding/blood drawing or anything else I'm not aware of.
Today I learn mouth care, because I'm not supposed to use toothbrushes for the next month or so, and I'm supposed to "void" into a plastic container once they hook up the saline and chemo bags so they can monitor my input/output ratio. Don't think about the last sentence at all. It's a rather disturbing concept, so just move on. Fortunately my room has one of the only views a patient room can have, of the two trees next to the hospital, and also of the connecting bridges between the Dana, the Kraft Blood donation center and the Brig. I think if I get bored, I'll have lots of fun using the in-room flashlight to signal the people working in the buildings across the way. Maybe we can even get some cup-string telephones going.
On the agenda for the rest of the day will be me getting hooked up the chemo, figuring out how to order food to eat, and entertaining whatever company comes my way. It may be a busy day, but since I won't be moving a whole hell of a lot, I won't mind so much. Unless they don't let me sleep later when I'm tired.

Anyway, I'm going to try to figure out this whole room service thing. I'm hungry.

Monday, October 20, 2008

Next stop, hospital

One more day. Today I'm going to try to focus and get everything done around here that I need to do before my "vacation" at the hospital. But in the back of my mind is this fear that I just can't get rid of. Well, ativan gets rid of it, but that's only temporary.

I know that nothing is going to happen in the hospital that isn't supposed to happen. You, my faithful readers, know that nothing is going to happen that the doctors aren't expecting. But, my imagination seems to know otherwise.

So to summarize the hospital stay (and put this in writing so I don't have to repeat it again): I will be in an isolation unit, called a pod. Everything I wear, touch, use or have near me has to be sanitized. Starting Wednesday I will be going through a high-dose chemo regimen designed to destroy my immune system and my body's mechanism for creating blood cells of all types.

Next week I get back the stem cells they harvested, and then stay for another 2 weeks while the stem cells take hold and cause the growth of new bone marrow and hopefully rbcs, wbs, platelets and the other cells I need.

Thursday, October 16, 2008

Anxiety is for the weak

So it's only another 5 days before I'm admitted to the hospital. The stem cell collection was relatively painless, and since I'm an overachiever, only took one day (they warned me that it could have taken all of this week, and in many cases takes at least 2-3 days). I would have said completely painless except for the back spasms and bone pain I suffered through all day. But I'm all done with that.
Tonight I've decided to go through the materials again and start making a list of things I need to bring to the hospital - something I've picked up from Ti apparently. But it will help me focus and not be so nervous about being admitted. The first day should be fine, as I'll just be meeting the staff who will be taking care of me for 21 days. It's the next four days I'm a little worried about, as I'll be getting high-dose chemotherapy. For those who haven't gone through it or seen anyone go through it, from what I've read and heard, it's a slightly more intense version of what I've already gone through and wrote about previously, hence the high-dose part. My last chemo session was 3 days in a row and that did a number on me, and I don't think they consider that a high-dose chemo. Forget feeling like a truck ran over me; I have a feeling that it will be like a convoy decided I was the quickest route to its destination.

But we'll have to wait and see. This weekend holds much promise of foods and stores and things that I won't be able to do until sometime after the new year. I think it would be hard for anyone to come to terms with the fact that everything they eat, wear, touch, and do for the next 7 weeks is pretty much thought out and planned, but I'm starting to get used to the idea. Once again I will be mostly confined to the walls of the condo, with the bars on the windows, and the lack of sunlight and fresh air. I can't really say that I'll miss X-mas shopping, but I will miss going out and seeing the lights of the stores, the crowds, the early snow and everything else that comes with the beginning of winter.

I'm also starting to miss fall, as I've been a little hesitant to go out these past few weeks and capture the time that I did have to enjoy being outside and everything that people see as a benefit to living in New England.

But there is always next year.

I'll wish everyone a good night, and let's hope the Sox can pull at least one more game out before calling it a season.

Tuesday, October 14, 2008

Fall Harvest

So today we went to Dana Farber for the stem cell harvesting. I think the best description is that they take all of the blood from my body, run it through some fancy dohickey and then return what they don't want back into me. Ti dropped me off at 7 (she had an 8 am appt with her dr.) and we left just before 5. Hopefully they will get all of the stem cells they need today so I don't have to go back tomorrow. 2 million is the magic number. Sometime tonight they'll call and let me know how I did.

It wasn't too bad an experience, except I kept making the machine stop somehow, and they took out at least 2 pints of blood after all is said and done. The stem cells were collected and put into a plastic bag, it kinda looked like ruby red grapefruit juice. Maybe a little darker.

Anyhoo, I've got to shower and get ready to watch the Sox. There is a chance I'll be awake past the 5th inning, but not a huge chance. I'm wiped. Who would have thought that laying in bed all day would be so exhausting. . .

Monday, October 13, 2008

Growing Pains

If only Alan Thicke were here to make things better. . . .

I re-read my rambling, long post and figured I hadn't done too badly for someone who was on the verge of sleep. It made sense, mostly, and I'm not going to edit anything.

So this morning, and last night, my bones have been aching horribly. I've been taking the Neupagen shots for the past week and I think they're starting to work. At least that what I'm hoping is causing the soul-crushing pain in my back and hips. Thanks to my body's condition, I can't take anything over the counter except Tylenol. Fortunately I only have 2 more days of this before I go to DFCI for the stem cell harvesting. If it hurts this much then, I'm getting the good stuff. Believe me, I'm getting the good stuff.

Don't bring up the Pats game. I don't want to hear it. They're having a bad season. I went through this for the first 8 years I was going to home games.

Anyway, if this is the first post some folks are seeing, I encourage you to read the post from Oct 11th. It's long, but one person told me that is was helpful.

Sunday, October 12, 2008

Warning: Lots of text ahead. Not for light readers.

So it's 2 am, the Red Sox just lost game 2 of the ALCS to the Tampa Bay Rays, my stomach is bothering me from the antibiotics I'm on and I can't sleep. But I want to go back to the beginning, hop into the Wayyyyyback machine and catch everyone up to where we are in the story. Before I start my long, personal, sometimes sad, occasionally happy but overall difficult post, I want to give the 5 W's, which I was told in school long ago must be established to have a story make sense.

Who: Me, Brian Anderson
What: My story of surviving Hodgkin's Lymphoma
When: Now, later, and whenever I feel like updating it
Where: Boston, MA
Why: Because I felt like now was a good time as any

For those who know me, don't feel bad or sorry for anything you read about in this blog; everything I've gone through is necessary for me to get back to a normal life. Or at least give me that option when I'm through with my course of treatment. I write this not for you, or my family, or anyone else. I'm writing this for me. I'm being selfish. I have cancer, so I take liberties when I can afford to do so, like my shiny new handicap parking placard.

For anyone suffering through HL, NHL or any other type of cancer, I wish you luck, knowing what you've been through and what you may have to go through in the future. Good luck, and I hope you achieve remission. If that is still far away (it is for me), I wish you peace of mind, and that maybe you can find that calming place within that will give you the strength to get out of bed in the morning.

It started out as a lump. Maybe chick pea sized, I really can't recall at this point, but it wasn't especially huge at first. I had just had a mole removed from my cheek that I had since I was a little kid. I had grown my beard over it, so it wasn't too noticeable, but when I shaved my beard I noticed it didn't look quite right. It wasn't. It turned out to be melanoma, which is scary enough, but one quick (and as I look back really easy) surgery, and I had nothing more to worry about in that department. But it made me paranoid. No more direct sunlight without SPF 50 or higher, no more lazy beach days, because I'll definitely get burned, and I even had to make sure I took care of myself at Sox and Pats games no matter how much I drank.
Moving ahead a few months to August 2007, I found the lump between my collarbone and neck. I can't feel the spot now, the Hickman catheter line in my chest goes over it, so now all I feel is a tube. But it was there, and it was growing. I finally got an appointment to see a doctor in September, and the first diagnosis was either Lyme disease or Cat Scratch Disease (look it up, it exists). I wasn't able to see my own doctor at the clinic I go to, but at the time I had no reason to think the swollen lymph node wasn't caused by a viral infection. Except the lump kept getting bigger. I said to Ti, my fiancee, that I was scared, because I knew deep down inside that it wasn't viral. What are the chances of someone who just dealt with one form of cancer getting diagnosed with another, completely unrelated cancer within 4 months?
After going through a course of antibiotics, the lump hadn't gotten any smaller, and I could feel a second one. Finally, in October, I saw my own doctor, told him about the melanoma, which was on the same side as the enlarged nodes, and he immediately set me up to see an ENT and have a CT scan done. After doing both, I met with the ENT a second time on a Wednesday. That Friday - two days later, they were going to biopsy one of the nodes to see what we were dealing with. By the time of this appointment, a third node in the same area, this one right on top of my collarbone, was starting to get larger. I could see the first two in the mirror in the morning, and as Ti will confirm, I couldn't keep myself from poking and prodding them.
So after being knocked out at the hospital, I awoke to a grinning doctor telling me that I had stage 2B Hodgkin's lymphoma. Probably not news most people would expect their doctor to be saying while smiling, but it wasn't metastatic melanoma, as they previously thought. If that was the case, I would not be awake at 2:41 am on Oct 12 2008 writing this blog. I may have not been here at all, and for hearing that news from my doctor, I was grateful.
After a painful phone call to my parents, with lots of crying on their end, as I was still waking up from sedation and not much could have rattled my cage that day, I got to go home and recover.
A few trips to the Boston University Medical Center to see the ENT again and to meet with my oncologist gave me a date to set when I would start my treatment. According to my doctor, and many of the medical sites on the web, around 7800 people in the US are diagnosed with HL yearly. The cure rate for the cancer is something like 95%, many of that made up of folks that a course of chemo and radiation clear up and they can resume their lives within a year. Every doctor at the Hematology Oncology unit I spoke with said that I was lucky to have the form of cancer that I had, as it gave the best odds for going into remission. I had the Diet Coke of cancer. Given those numbers and outlook from my doctors and most of the medical sites I researched during my early days of dealing with this, I was hopeful the 6 cycles of chemo I was to be given would fix me up and I could resume life again.
During October, November and December I had a few more tests and procedures done: PET scans, CT scans, blood draws, an EKG, a PFT and a bone marrow biopsy. If you have to get a bone marrow biopsy, and your doctor tells you that it won't hurt, or that a few Tylenol will make you feel better after the Novocaine wears off, THEY'RE LYING. A bmb is where they make a small incision on your back, cut down to your hip bone, then use a hand drill to cut out a core of bone marrow. I didn't feel anything during the process, but as soon as the numbing wore off, I was in a hell of a lot of pain. So I spent 3 days lying on my side on the couch, because doing anything else caused me to wince in pain. I had a few Oxycontin left over from the biopsy surgery, and even those didn't do anything. But eventually the pain subsided and things went back to normal.

There are two dates from this experience that I will remember for the rest of my life. I can't remember when the biopsy was, or when I saw my oncologist for the first time, but the days of October 21st and December 19th have left a mark in my mind. 12/19/07 was my first day of chemo at BUMC, I'll get to the other day eventually.
The doctor prescribed 6 cycles of ABVD, which are Adriamycin, Bleomycin, Vinblastine and Dacarbazine (Hmm, I love me Dacarbazine - Scourge of all fast growing cells). I suggest those who aren't familiar to look it up on Wikipedia. Three of the drugs were injected into my IV, the fourth given via a large bag over an hour. I'm not sure, but I think all of them are caustic, and if a drop gets onto bare skin, will cause chemical burns like you wouldn't believe. And I was fortunate enough to have the hospital pump me full of them twice a month from Dec 07 until May 08. The first two treatments didn't go so well. The veins in my arms aren't so easy to find, and a few days after the treatment, the vein they used in my arm would hurt. My chemo nurse Janet said it was the vein being damaged by the chemicals. There was a chance that by going through chemo I would damage my veins permanently.
Something also happened between my first two treatments that most people don't know about. I caught a cold right before my first treatment. I had a fever of 100 the first time the nurse took my temp. They were concerned and didn't want to go ahead, which would have meant waiting another week. But after 30 mins or so, it went down to 98 and they gave me the chemotherapy. Because my immune system, which wasn't working too well to begin with, was still fighting the cold I had, the chemo killed off the growing white blood cells. My cold got worse and we ended up at the emergency room at BUMC at 5 am on Christmas Eve. After a few bags of fluid and a few cups of juice, they told me to go get some Sudafed, go home and drink plenty of fluids. And take my temperature every 5 minutes, but that may have just been Ti being overcautious, which I sometimes take for granted. To make this long story just a little shorter, I got over the cold. Thank you Affrin!
My doctor recommended that I have a catheter put into my chest so the rest of the chemo would be easier to administer, and I wouldn't have anymore pain in my arms. A Wednesday in January, a day I was supposed to (and still did) have chemo on, was the day we arrived at BUMC at 6 am for the insertion. After the most painful medical procedure I have ever gone through, Ti and I managed to get to the oncology clinic in time to go through the fastest chemo of all of my cycles. I can't say enough about my port. It's convenient for the doctors and nurses to use, its under the skin so it isn't too noticeable, except for the three dots that indicate where it is, and it's pretty low maintenance. I highly recommend it to anyone having to go through chemo longer than 2 cycles.
After 5 more months of a few days of work, chemo, lots of sitting at home playing my XBox, then back to work for a few days, I was done with ABVD. I suffered through most of the side effects that I was warned about, and a few I wasn't. Fatigue was pretty bad, making me tired and lethargic all the time. I had a few bouts of vomiting, problems with my stomach and associated parts, but I hadn't lost my hair. It thinned a bit, on my scalp and in my beard, but it was mostly there. It changed colors from the auburn/dark brown color to blonde in places, but it hadn't really fallen out at all. To look at me then, you wouldn't have really known I was a cancer patient.
Out of all of the side effects, I've been told this is the one people worry about most. They get over the "chemo eyes", which is what I call the dark circles and bags I got after treatment, and can deal with the other side effects, but the hair loss is the most dreaded. Ti reminds me today that back then I would keep complain that my hair was going to fall out, and even got me a T-shirt that says "Ask me about my Eyebrows" that I really have never gotten a chance to wear. In retrospect (I'm bald now, but I still have my 'brows), I shouldn't have bellyached so much. I think I've grown quite a bit because of my experience and looking back, if I knew what was ahead of me, I should have shut the hell up.
In addition to all of the above, I lost my taste buds for the first 7-8 days following chemo. Things didn't taste right, certain foods weren't good, and I really didn't want to eat. In a way, I was like this cyborg: http://www.youtube.com/watch?v=8jrO5rofc5A
Lucky for me, drugs are my friend, and my medical team has given me things to deal with every side effect that we could tell them about. Since the treatments were two weeks apart, I would tend to forget what I went through the 5 days following chemo, but Ti was there, notepad in hand, to tell them everything from the vomiting to snoring loudly when I slept.
Before I go on, and there is still quite a bit to tell, I'd like to point out how important Ti has been in this whole process. She has been my driver, my companion to almost every medical appointment I've had, my caretaker, my best friend, and the love of my life. Without her, I don't think I would have made it through the past 18 months in one piece. Technically I didn't, but I think the addition of two catheters cancels out the subtraction of one swollen lymph node. I also want to thank all of my friends who have reached out to me and gave me support through these difficult times. If you do manage to make it to this point, let me know so that I know my efforts weren't wasted.
In June, two weeks after my last chemotherapy, I had a PET scan done. Ti, my mother, and many other folks were confident that the worst was over for me and that we could look forward to things like planning the wedding, which was already postponed once due to this stupid disease. The follow up with the doctor was a few weeks after the scan, as I did want to try to enjoy at least part of the summer, and spend some time catching up at work. When we met with him, things got very quiet. To me, the floor fell out of the room when he said that the tumors were still there, not all of them, but a few. The ones in my neck had gone back to being pretty invisible (a regular lymph node isn't viewable to a naked eye - the three in my neck were just shy of golf-ball sized when I was first diagnosed), but the ones in my chest were still there. One of them had the nerve to get larger between my PET scans in Feb and June. Either the chemo was feeding it, or as soon as I stopped treatment, it gorged itself on Mexican food. Hmm. I want a burrito now. My chances of recovery, of survival, of being alive to see the presidential election in 2012, dropped down from 95% to somewhere in the 60% range. Not great odds, but I'm a gambling man, so I'll take them anyway. Plus, what else do I have to do for the next 6 months.
Anyway, he recommended I go to Dana Farber and meet with their oncology team to see what they thought about the situation. He told me the next steps should be a few cycles of a chemo called ICE followed by a stem cell transplant with the possibility (Oh Boy!) of a month of full body radiation. So to the DFCI we went. And the doctor there, who is now my doctor, agreed with the plan of treatment. The following week, I started the beginning of the scariest, most intimidating process I will ever go through. I ended up getting 2 cycles of R-ICE, which is Rituxan, Ifosfamide, Carboplatin and Etopiside, three weeks of recovery between cycles. This treatment is different from the ABVD, which is only once every two weeks. I took it from the longer amount of time between treatments that it would kick my ass all over the place, which it did as expected. This requires three straight, long, days of treatment. So we'd get there at 8ish, and leave between 4 and 5. I'm allergic, apparently deathly allergic, to the Rituxan, which is given on the first day of the cycle of treatment. We found this out about an hour into my infusion, when I started wheezing, coughing and generally not being able to breathe. Anaphylactic shock is not anything I ever want to go through again. But it didn't bother me too much after the two bags of liquid Benadryl they gave me kicked in. Hell, nothing bothered me for the rest of that afternoon. Ti probably saved my life that day, because apparently I'm too much of a stubborn ass to call for the nurse, even when I'm dying.
Because Ifosfamide can damage my bladder, they gave me a syringe full of a liquid I was to drink at home, 4 hours after they gave it to me (via IV) at the clinic. Mesna. It smells horrible, and it tastes as bad as it smells. For 6 days during this chemo I had to take it at home. The pharmacist, on the first day, came over and said to us, "I'm sorry" when she handed it over. I managed to get it down all 6 nights, but the last was the worst. It almost came back up. If it did, I either had to try to drink it again or go to the hospital for an IV dose. I can't describe how it tastes, other than to say that Drain-o or bleach would taste better. Also, I had to drink and receive via IV, without even exaggerating, something like 3 gallons of water a day. There was a path worn in the floor between my chemo chair and the bathroom down the hall. And I really didn't sleep too well. My toilet just isn't that comfortable.
Next PET scan, clean bill of health; I'm in remission. I will never, ever, under any circumstances, say that I am "cured". I would appreciate it if anyone I talk to in the future not say that I am either. The cancer may come back. It isn't a negative or defeatist statement, it's the truth. And after everything I have gone through (2 cancers, 8 cycles of the most caustic substances man has found to inject into other people, and Mesna), I have realized that it is always a possibility. If you are offended by my feelings on this matter, there isn't anything I can do to change how I look at the situation. I know it isn't something my friends and family want to hear, but I consider it a hopeful statement. Just because it has a chance to come back doesn't mean it will. Hell, Manny has a chance of being resigned by the Sox next season. It may be a 0.0000001% chance, but hey, the possibility is still there.
Finally, my hair fell out. If you haven't seen me in quite a while, I no longer have the beard and hair of any color. The strange thing about that is the hair pretty much turned black within a few days and started falling out in clumps. I started using tape to clean my pillow, sheets, shirts and anything else I shed on. Ti even took a strip to my head and removed huge chunks at a time. No, it didn't hurt, and when enough of it was out, I took the lead and just shaved the rest off. By then I was looking like someone who had spent way too much time standing next to a microwave. The rest of the side effects were mild, except I was tired for the 3 days following chemo.
Following all of this, and getting close to the present day (yay, I'm almost done writing this and that much closer to sleeping - it's 4:12 am!) I had a Hickman catheter (October 2nd) installed on the left side of my chest, which is an outie. It's two tubes coming out of my chest that they will use for the stem cell transplant. How it works is that I give myself injections of a growth stimulant for 10 days. Then I go to DFCI and they run my blood through a machine that separates the stem cells from my blood and returns it to me. According to them it may take anywhere from 3 - 5 days, maybe longer, for them to collect the 2 million stem cells they need. After they're collected, the cancerous cells removed magically, and frozen.
On October 21st (a ha! now he gets to that date that you forgot I wrote about back on page 37) I get admitted to the hospital, Brigham and Women's, into a "pod", which is a fancy word for really sterile room. I'll get chemo for 4 days straight, which will kill off my red blood cells, white blood cells, platelets, the remaining hair follicles I have left, and probably my appetite for a week. On day zero, which is Oct. 28th, I get my stem cells back. Then I spend two weeks resting. From then on, my days aren't really known by their date. They'll be called "day 1, 2, 3 . . . 30. . . 100" until the doctor says I can stop.
The recovery for this process is something like 6 months. I'll have no immune system, so I can't be around sick people. For the first 30 days after being released, planned for Nov 11th, I can't really be around anyone except Ti and the hospital. If I leave home I have to wear a mask and gloves. I can't eat from restaurants, I can't go to stores. I'll be a shut in. But Ti will be with me to make sure I get fed and call the doctor if anything goes wrong. On my first visit to DFCI, they gave me a book that I'll call "So, You're Having s Stem Cell Transplant!" that is 300 pages long and is pretty much a list of things I can't do or eat.

And that brings us up to now. I'll wrap up this post by saying to everyone that I appreciate the support and positive thoughts I've been getting from my friends, family and folks at work. Please understand that if it takes me a week or two to get back to your email, or if I don't pick up when you call it isn't because I hate you. It's because the treatment will do a lot of bad things to me. Eventually, when I'm up to it, I'll call, email, maybe even invite some of you over for a visit. I'm not sure when that will be, but eventually my life will return to normal, and we can start to enjoy the future.

2008 has been the worst year of my life. But I'm still smiling, laughing and enjoying what I can. Don't worry too much about me. I'll survive. I'll achieve remission, again.