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.