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.

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.

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.

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.

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.

No post today.

Ironic, isn't it?

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.

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.

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"

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.

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

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.

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.

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.

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

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.

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.

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.

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.

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.

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.