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:
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.