You can submit questions ahead of time or during the live event.

Rodney Warner, Esq

When I started treatment, my sister suggested I write a journal of my experiences. I didn’t, because I couldn’t imagine wanting to keep a record of such an awful experience. Having survived it, and perhaps forgetting some of the really awful stuff, I wish I did keep a journal. The people I met were the best part of dealing with cancer, and I wish I kept some notes about them. These are some of the fellow travelers I remember most…

Blowing Chow

My first go round with chemo was outpatient at Hartford Hospital in Connecticut. I would normally be in a room with one or two people. For some reason, almost all of them were women. One was being treated for breast cancer that had spread to her bones. She had a cell phone, which was much less common nine years ago. She had kids, I think teenagers, with whom she talked on the cell phone. She had a white collar job, and told us that six years earlier, she was told by an oncologist she had six month to live. With my first chemo combo, I had chemo a total of 15 times. She was the only one who threw up while getting chemo that I saw. I heard it coming, and looked away. She apologized, but what was there to apologize for?

I met another woman who also had a very tough time with nausea. She said she tried every drug available. She tried Marinol, which is like marijuana in a pill. She said she didn’t like it, because it made her high all day long (I thought to myself, what’s wrong with that?). Her remedy was smoking pot, which only made her high temporarily, I guess. She said she smoked before every meal. She said it calmed her stomach and made her hungry. She had to explain to her kids, who were in high school,  that pot really isn’t something you should use, but she felt she had to.

Oh Woe Is Me!

The very first time I came in for chemo, I shared a room with a guy in his 60’s (I was 34 at the time). All he could talk about was how his life fell apart after he retired (starting with his health). I was in no mood to hear this guy piss and moan about the fact he only had 60 or so good years before things fell apart. I told him my age, I was stage IVB Hodgkin’s lymphoma, and doubted I would ever see 60. That made him shut up, after he told me how bad it was to have stage IV lymphoma. He was a real gem.

It’s Not Just the Cancer

For two or three days I shared a room with a woman who I guess was in her 70’s. She needed a wheelchair to get around. She had non-Hodgkins lymphoma. She had twin daughters, both of whom were nurses, who would come in with her. Not only did she have cancer, and need a wheelchair to get around, but had a husband who was a stroke survivor. One of the daughters told me that as a result of the stroke, the husband underwent a radical personality change, and he was verbally abusive to his wife. I guess she didn’t have enough to deal with.

A Study in Contrasts

After my first relapse, I had two rounds of inpatient chemo at Hartford Hospital. During round one, I had a roommate with a bulge on the right side of his neck the size of a peach. It was this ugly, unnatural, greenish/pinkish color. He was always going in and out of the room (I was by the door). He was a recovered heroin user, on methadone, who’d go outside to smoke. During one of his smoke breaks, his sister overheard a couple nurses ask each other where he was, one wondered aloud if he was out trying to score some dope. This enraged the sister, who lit into the nursing supervisor about this, while the two were in my room. I asked them nicely to take it outside. They apologized and went out into the hall.

If roommate number one wasn’t an upstanding citizen, roommate for round number two was. He was in a special bed to prevent bed sores. He had pneumonia. He had paraplegia. He was in his 60’s. Lung cancer had spread to his spine. The tumor grew so much, it crushed his spinal cord, leaving him partially paralyzed. He worked 30 or so years at a big, local manufacturer, made his way up to middle management and retired to enjoy his golden years.

About eight months after retirement, he had really bad back pain (which he thought was caused by moving furniture). Cancer was the back pain and it spread throughout his bones. When I talked to him, he was completely unemotional and matter-of-fact. It was like we were talking about the weather. Doctors estimated he might live another year and it looked like he was trying to make the best of it.

His situation really struck me. He worked all those years, did all the right things, played by the rules and his retirement was less than golden. I asked one of my doctors (one of my favorite doctors, Peter Tutschka, who’d been treating cancer patients for 30 or so years) what were the saddest cases he’d dealt with. He told me it was the children who were terminally ill, and the older adults who worked, scrimped and saved all their lives for a retirement that never came.

Time is Not On My Side

Also after relapse number one, I was treated at the Yale Cancer Center for high dose chemo and an autologous stem cell transplant. Unlike Hartford Hospital, in which chemo patients were treated in several small rooms, Yale had everyone in one big room.

I remember looking around, seeing men and women, different ages and colors, probably from all different walks of life, stuck in the same place doing the same thing, getting treated for cancer. I thought that all of us should be doing something better. Instead of spending days in the friendly, fluorescent bulbed, anti-septic smelling chemo ward, we should be working. Or travelling. Or spending time with family. Or going to school. Doing something, anything, other than spending another day at the cancer center. You hear a lot about the cost of cancer treatment, how often it fails, the side effects of treatment. You don’t hear much about how much time cancer, and its treatment, sucks out of your life (and the lives of your loved ones). Days, weeks, months, years….time not spend something else.

I had an allogeneic bone marrow transplant at Tufts Medical Center in Boston. Down the hall, in a corner room, was a woman whose transplant didn’t go so well. She had graft vs. host disease so bad they couldn’t discharge her. She’d been in the hospital about six months. I was in the hospital for about three weeks, and was ready to jump out the window. I can’t imagine living in a hospital with no end in sight. I also can’t imagine what her hospital bill must’ve been.

Who have been your fellow travelers on the cancer treatment trail?

Rodney Warner, Esq

I recently attended a networking group for blood cancer survivors at Gilda’s Club Delaware Valley in Warminster. We were asked a couple interesting questions….

How did you get the news?

I’ve been told three times I had cancer, the original diagnosis and two relapses (relapsi?) .

I had been deathly ill for three months in the Fall of 2000. I had fevers, night sweats, coughing, exhaustion, itchy skin. I went to a chest specialist, because my “pneumonia” wasn’t getting any better (tumors were in my lungs, not fluid). I had a battery of tests and a full body CT scan.

After the scan, we got a phone call. It was for me. It was the chest specialist. I was in the bathroom, on the toilet. Normally, the polite thing to do is to either ask the caller call back, or tell the caller you’ll call back. I was in no mood for politeness, I needed to know what was wrong with me. So I first learned I probably had cancer, sitting on the toilet, with my pants around my ankles.  Not very heroic, but true.

After the call was over, I managed to get off the toilet, pulled up my pants (I hope I flushed and washed my hands), told my wife, and cried like a baby.

To get a definitive diagnosis (lymphoma was suspected, but what kind was unknown), a lymph gland in my chest was biopsied. I think a couple days later, there was another phone call. It was Hodgkin’s (the “good” lymphoma). I was at home ironing clothes at the time. I was relieved to get a diagnosis, because I was sick for a total of two years (on and off), and the cause was a mystery. I figured once we know what we’re dealing with, we can do something about it.

I thought I should start making some phone calls. Then I thought, screw it, I’ll finish ironing first. It was one of those moments when I decided that, in my small way, I was going to have cancer, it wasn’t going to have me. I finished ironing, then made phone calls.

I had chemo and radiation. I was told I was in remission. Six months after treatment, I was back to see my oncologist, Stephen Fiershein, for a check up. I felt OK, had this dry cough, but was fine otherwise. He sent me for a chest x-ray. Some time later, I can’t recall how long, I was back in his office.

I was in an examining room. He told me he had bad news, I’d relapsed. It looked like there were tumors showing up in my lungs on the x-ray. Then he left the room. Dr. Fiershein didn’t offer a shoulder to cry on, hold my hand, give me reassuring words. He delivered the news, and exited. Dr. Fiershein wasn’t new to doctoring. I guess this is the method that he uses, this is what works for him. Given his line of business, he must give bad news frequently.

I cried some more, imagining having to go through all this treatment crap all over again and it looked that much more likely I was going to die. He came back a short time later, after I’d pulled myself together. We discussed what to do next. He also pulled out a chest x-ray done three months after treatment. With a second look, he said there were changes in the three month x-ray, and I may not have really gotten into a remission at all.

The third time I was told I had cancer was in December 2002 (I think it was the 12^th). By then I’d had a lot more chemo and an autologous stem cell transplant (in February 2002 at the Yale Cancer Center). I’d had CT scans every three months afterward. The Yale Cancer Center transplant coordinator, Erin Medoff, called me at work in the afternoon. The December scan showed three tumors in my liver.

Two relapses in two years was really bad news. I felt I was on a slippery slope to oblivion. Whatever I was working on at the time had no meaning. The last place I wanted to be was in my office. I told my boss the bad news, and that I had to leave work early and go home. I can’t recall exactly what I did when I got home. I’m guessing a lot more crying. I doubt I did any ironing.

Did the cancer give you any pain?

Before I was diagnosed, just above my right leg would be very painful if I sat for more than a couple minutes. I was told that one of my glands had swollen so much that it would rub against a nerve if I sat. At meal times, I would sit long enough to shovel food into my mouth, then get up from the table. That’s really the only pain from the cancer I can remember.

Treatment, and side effects, were a pain. Before my transplants, I had a lot of chemo and as a result, constipation. It was particularly bad in early 2003, prior to my allogeneic bone marrow transplant. The human rectum is not designed to pass billiard balls, but that’s what I was doing. I remember banging my head on the bathroom wall, to distract myself from the pain I was feeling at my other end. After one would pass through I’d take a peek to see if it was a stripe or a solid. I even passed a cue ball once.

Also before my allo transplant, I had the skin infection from Hell. It’s my guess it was caused by a bug of some sort, which my body could’ve easily handled but for my impaired immune system. It afflicted a uniquely male area of my body, the last place a guy would want an infection. I went to a dermatologist, who didn’t know what it was at first.  I eventually got it treated. I had to go to work wearing sweat pants and walk around bow legged for a while. Dr. Fiershein was curious about my condition, so I obliged his curiosity. He said he’d never seen anything like it. I’ll spare you further details.

How did you get the news? Did you have to suffer any pain because of the cancer?

I’m a Roman Catholic who attends mass (almost all the time). On the front page of the church bulletin is a summary of this week’s Gospel, Luke 4:1-13. I read it, and it stated in part, “Jesus feasted on dessert for forty days.” I thought to myself, I’d been going to church all my life, and can’t remember anything like that. Then I wondered, what kinds of dessert could He have eaten for forty days back then? Certainly not ice cream, it would just melt. Baklava maybe. Out of character for Jesus, pigging out like that. Not setting a very good nutritional example for us followers, either. But it made him seem that much more human. Then I read it again, and it really stated, “Jesus fasted in the desert for forty days.” That made much more sense. I’ll blame it on chemo brain.

Panelists

Lora Packel MS, PT, Assistant Professor at the University of the Sciences in Philadelphia.

Andrea Richtel-Baranas, MSE, MPT, lead therapist, Abramson Cancer Center.

Karen Wagner MS, RD, LDN, clinical dietitian specialist for the Abramson Cancer Center

Audrey Caspar-Clark, MA RD CSO LDN, Clinical Nutrition Specialist at the Hospital of the University of Pennsylvania

Rodney Warner, Esq

In some circumstances, a grandparent can be awarded partial custody or visitation rights for a grandchild. Such a right could be exercised when,

• The court finds it is in the best interests of the grandchild,
• A birth parent is deceased,
• The parents are divorced, or have been separated for six or more months (if they never married), or
• When the grandchild lived with the grandparent for 12 or more months, then was removed by a parent.

In extreme circumstances, the grandparent may be granted full physical and legal custody. The grandparent would have to show,

• It is in the best interest of the grandchild,
• The grandparent has genuine care and concern for the grandchild,
• The grandparent must have assumed the role of a parent for at least a year, or
• It’s been determined the grandchild lacks proper parental care, or
• There is parental abuse, neglect, substance abuse or mental illness.

Legal Aid of Southeastern Pennsylvania has a pamphlet about grandparent’s rights in Pennsylvania.  Check with other legal resources for information specific to your state.

Rodney Warner, Esq

Cancer robs us of our most valuable illusion, the future. There’s so much we put up with, salving our wounds with the thought that things will get better in the future. That jerk of a neighbor will move. You’ll get a promotion, or a better job elsewhere, if you just keep plugging away. Your kid will grow out of that nasty phase. Once you retire, you won’t have to put up with all these clowns that cut you off on your drive to work. Ah, retirement, that pot of gold at the end of the rainbow. So many plans. So many hopes. All those things you’ll do, places you’ll go, in the future.

Guess what? For many of us, there is no future. Those plans, desires, that sweet honey that got us through the day, can dry up and blow away. Many only have the cancer treatment treadmill to look forward to.

For me, getting through treatment meant blocking any thoughts of the future, because the future might’ve been declining health and increased suffering. Not something you want to think about. I tried to think about what’s needed to get me through the day, the week, the next round of chemo, the next blood test, the next scan. What can I do to make it a better day? What can I do to make myself feel better? I put the blinders on. This is where I am. This is how I’m going to make the best of it.

The future is the last thing I wanted to think about. The future I feared was in store for me made me break out in a cold sweat and my stomach churn.

I suppose some might get through treatment focusing on that happily ever after, after I get through treatment, after I’m cured, these are all the fun things I’ll do. I’m too much of a pessimist to take that route. That wasn’t my coping mechanism.

You have to take the path that works for you. Want to be the happy warrior, go for it! Want to play the Eeyore, do it! If someone doesn’t like your approach, cancer gives you the excuse to tell them and go somewhere and do something physically impossible with their opinion.

Of course, wallowing in depression is only good in limited doses. You can mourn the loss of your health, the loss of the future you always dreamed of, but you’ve got to move on. Clinical depression is not all it’s cracked up to be. If you feel you’re in a rut you can’t escape, get help.

One loss I deeply felt, was the loss of another illusion, control (I suppose it’s the flip side of the future). I remember sitting in my hospital bed, feeling lousy, not where I wanted to be, not at work supporting my family, not with friends having a good time, not doing anything I wanted to do. I felt totally adrift, at the mercy of my rebellious cells. Would I be cured? Would I die? I had no idea. I was just along for the ride.

How do you gain power when you’re feeling powerless? Be nice. Help someone else. Thank the nurse. Talk to your fellow patient. Try to make him laugh. Thank your doctor. However you can, make someone else feel better, feel appreciated. Even if all you can do is talk, you have the power to make someone else feel better. It may not be all the power you wished you had, but it’s a power that shouldn’t be underestimated.

Hope for the Best

I guess this contradicts not thinking about the future, but I’ve never claimed to be logical.

You know all the bad things that can happen if the cancer gets out of control. You’ve heard about all the nasty side effects of treatment. But given the roulette wheel nature of cancer treatment, no one really knows on which number the ball will land.

So don’t stress about it. Focus on today. Don’t think about all the bad things that might happen. Until you’re told otherwise, the bad stuff won’t happen. In 2002, I had really heavy duty chemo and an autologous stem cell transplant. I read about all the possible side effects and the infections. I wasted so much energy anticipating all this nastiness to start. They didn’t happen. For a month I felt like I had the hangover from Hell, and I was bald as an egg, but that was pretty much it. No infections, hospitalizations, long term side effects. I relapsed ten months later, but that’s another story.

Hope is a frame of mind. For me, it was the ability to force as many of the bad thoughts out of my head as I possibly could. What was left got me through the day.”

How do you cope?

Rodney Warner, Esq

What You Have, What To Do About It

When I was diagnosed nine years ago, the internet was a very different place. Not nearly as polished. Search engines weren’t as good. Hour after hour I’d search, and read, and search, and read. When the possibility of lymphoma was brought up by my doctor, I went to the internet, looked up the symptoms. And I had most of them. It was like someone turned on a light. This mystery illness that had tripped me up for a while, then threw me in a ditch, finally had a name.

The internet is a tremendous resource, and it’s expanding every minute. Most of those I’ve talked to about researching their illness report the same experience I had: an unquenchable thirst for knowledge, hours of research, then the point of diminishing returns. You don’t want to learn any more. You either can’t find anything new, anything you can understand or the news is just too depressing to read any longer.

OncoLink is an excellent resource, but there are many others. These are some that I’ve used….

•   American Cancer Society
•   National Cancer Institute
•   The Merck Manual

If you really want to drive yourself nuts, try MedlinePlus. You can learn about cancers, drugs, supplements and herbs and clinical trials. For those of us who are truly crazed for information, there’s PubMed . It’s an incredibly powerful source of information, but unless you’re a doctor, it may not make much sense. It’s a database containing thousands of medical journal articles. Give it a try .

Who Should Treat You, Where

We ask so much of doctors. They have to be brilliant, well versed in the latest treatment and research, warm, sociable, understanding, compassionate and gifted at communicating with their patients. That’s all we ask. Good luck finding that doctor. You’re not perfect, I’m not perfect and neither is every doctor.

How to pick a doctor? There’s no right answer to that question. Whoever is treating you will probably recommend someone. I suggest asking your doctor, if you were in my shoes, who would go to? You can ask someone you know who’s been treated for cancer. Find a support group for those with your cancer. Who are attendees going to see? Who would they suggest? Who would they avoid?

What I look for in a doctor is humility. If you’re considering a doctor, and he/she thinks he/she knows everything, keep looking. Oncology is an art, not a science. Each patient is an experiment, each person will react to treatment his/her own way. The doctor may have a good idea how you’ll respond, but only time will tell.

Ken Miller at Tufts Medical Center in Boston was my allogeneic bone marrow transplant doctor. As of 2003, he’d been doing transplants for about 35 years, and I was about transplant number 1500 for him. I asked him what he’d learned in the past 35 years. He replied, “I’ve learned how much I don’t know.” That may not have been the right answer for you, but that was spot on for me. I think humility is a good thing.

There are plusses and minuses to being treated at a major cancer center. I’ve been treated at bigger, and smaller, hospitals. I’ve been happy at both. If you have a rare, or advanced, cancer, you might want to give a second look at a major cancer center. But don’t assume that because your local hospital isn’t big and world famous, you won’t get state of the art care, or the doctors are less qualified. Maybe they just don’t want to work at a big hospital, in a big city. If you’re undecided as to where to get treatment, check out this really good article on cancer center advertising.

Talk to different doctors. You may feel the Big Cancer Center Treatment Plan would be right for you, but the logistics of going back and forth would be a pain. You could talk to the Local Cancer Center doctor about what you want and find you can get the same treatment closer to home, with less hassle.

Who Could Help

If you’re blessed with friends and family willing and able to help, let them. Don’t play the martyr. Don’t be proud. Be gracious. If someone cares about you, they’ll want to help. They won’t be able to cure you, but they want to do something. Refusing their help will be denying them the opportunity to feel good. You get help, they feel good. It’s a win-win.

If there’s a number of people wanting to help, appoint one the Project Manager (PM). If someone tells you they want to cook meals, mow your lawn, bring your kids to little league practice, drive you to the doctor, walk your dog, give them the name and phone number of the PM. You will tell the PM what you need help with, when. The PM will coordinate your needs, with the help your friends and family will supply.

If you feel the need, ask your treating physician if there any nearby support groups you, and/or your caregiver, can attend. Having attended many myself, a well run group can be a big help and sometimes, will leave you laughing. Talking to those on the same path, to people who’ve been there-done that, can help allay fears.

Two organizations you should look into are Gilda’s Club and the Wellness Community. They provide free networking, support, educational and social activities for cancer survivors, care givers, family and friends. Their national organizations merged, but local chapters are independently run. See if there’s a chapter near you, click here.

If you’re feeling overwhelmed and that your emotions are getting out of hand, talk to your physician. Getting psychological help doesn’t carry the stigma it used to, but for some it may be difficult to ask for. Don’t be afraid to ask for help. During my treatment, I was seen by health care professionals ranging from social workers to a psychiatrist. If you do get help, and medications, make sure your doctor knows what you’re taking. Some meds don’t mix well together.

What do you need to know? What has your knowledge quest been like?

Rodney Warner, Esq

Congratulations! You’ve got cancer!
It came as a surprise to me. My family members have a long and colorful history of heart attacks and strokes taking them out. Cancer just wasn’t on my radar screen, especially at age 34 (shortly before my diagnosis, a radiologist told me I was too young to have cancer).

If you’re newly diagnosed, it might’ve come as a complete shock. Maybe you felt perfectly healthy. Maybe, like me, you were sick as a dog, but no one could figure out why.

It’s a shock to the system. There you were, in your perfectly imperfect life, doing your thing, doing the best you could, then The Big C comes to town and rocks your world. It’s an emotional tsunami ripping through your brain, tearing at your heart and maybe pulling your family apart. You scream, yell, cry (I did that a lot). Maybe you pray, maybe you curse God. Whatever works for you, if it feels good, do it and get it out of your system. Then move on, as best, and as quickly, as you can. Get your act together, brothers and sisters, because cancer waits for no one.

I’m a guy. Not real touchy feely. I like to think I’m empathetic, but if you’re too emotionally paralyzed to deal with the situation, come back to this blog when you’re up to it. I’m here to lay some practical advice on you, discuss issues and give my view point on things.

How did I become an expert? Am I a doctor or a nurse? I’m nothing that useful. I’m a lawyer. But I am a cancer survivor. During my treatment history, I’ve gone through six treating physicians at six hospitals in four cities in three states (in the interest of full disclosure, one of those hospitals is HUP, one of those doctors is at Abramson).

I was misdiagnosed for two years. My fevers and night sweats were blamed on infections. Pneumonia caused my coughing. The doctors were clueless as to my itchy skin. The real culprit (diagnosed with the help of a different radiologist) was stage IVB nodular sclerotic Hodgkin’s lymphoma. It’s a cancer of your lymph nodes. Those glands in your neck your mother would grope to see if had an infection (they often enlarge when there’s an infection). I was diagnosed in December 2000. About 7500 Americans are diagnosed with Hodgkin’s each year, about 1500 die of it.

There was Stanford V treatment (which includes five chemo drugs) and radiation. After relapse one, there was ICE and DI-CE, high dose chemo (BEAM) then an autologous stell cell transplant. After relapse two, there was Gemcitabine, Navelbine, Doxil and an allogeneic bone marrow transplant (complete with total body irradiation, the closest I hope I come to being inside a microwave oven). I’ve had chemo as an outpatient, inpatient and at home.

Along the way, there were: breathing problems, nausea, peripheral neuropathy, weight gain, insomnia, heart burn, constipation (so bad I tore a muscle where you don’t want to tear a muscle), diarrhea, skin burns, baldness (two or three times), exhaustion, bronchitis, the skin infection from Hell (in the last place a guy would want a skin infection), depression, mood swings and suicidal thoughts. Throughout treatment, I was on an anti-depressant and at one point I was taking steroids (prednisone) by the handful (120 mg/day). If taking that much steroids won’t F you up, nothing will.

I’ve had needle biopsies and surgeries. I’ve had a port and a Hickman catheter. I’ve lost track of all my x-rays, CT and PET scans. I’ve had blood tests by the score.

I’ve been treated at small, local hospitals you’ve never heard of, I’ve gotten second opinions at world famous cancer centers (one such opinion, seven year ago, was that I was terminally ill). I’ve been treated at major teaching hospitals. I’ve been seen by social workers, a psychologist and a psychiatrist. I had great doctors all along the way. I loved my nurses (I still correspond with my first chemo nurse, who first helped me nine years ago). The hospital food, not so much.

Was it all worth it? Absolutely! I’ve been cancer free (as far as anyone knows) since March 2003.

In a nutshell, my four keys to getting through cancer treatment are:

•   Educate yourself,
•   Make the best decisions you can,
•   Take one day at a time, and
•   Hope for the best.

In the future, I’ll expound on these themes, and God knows how many others, but for now I’ll let you off on an observation. The better you are at suffering, the better you will be at getting through this. If you don’t suffer well, this will be difficult. This ain’t no party, this ain’t no disco, this ain’t no fooling around.

Not only is there the physical suffering of the cancer, treatment, side effects, but of all the crap you might have to deal with. Family issues. Work problems. Insurance. Finances. The sheer volume of time you’ll be spending during treatment, not doing anything else productive. Hospital staff not as helpful or caring as they should be. Friends that disappear and clueless family members. You just have to get yourself through this.

If you can accept the fact you’ve got this cross to bear, you’re heading in the right direction. This cross will vary in size and weight from person to person. I wound myself up during my autologous transplant, fearing every side effect and infection in the book, and they never happened. So prepare yourself for some kind of cross, but don’t assume it’ll be made of concrete and covered in barbed wire.

OncoLink is kind enough to give me this soap box, but I want it to be your soap box too. Talk to me. Ask me questions. Give me comments. What should I discuss? What do you want to know? What makes you feel good? What pisses you off? What are your problems? What are your solutions?

Join me, brothers and sisters, on this internet extravaganza we call OncoLink. The engine is running and the parking brake is off. Where do you want to go?

Tune in for our live webchat January 14, 2010 from 12:30-1:30PM EST to learn more and ask our experts your questions. You can submit questions ahead of time or during the live event. A transcript will be available after the event in case you miss it.

Rodney Warner, Esq

I loved Christmas. What boy didn’t? Especially a greedy little urchin like me, who measured Christmases by the size of the pile of gifts I’d get, and whether or not I got all the G.I. Joe paraphernalia I asked for. It wasn’t a spiritually uplifting, get together with loved ones, Jesus our savior is born kind of thing. Christmas was all about the toys. A week off from school was pretty cool, too.

Later, I learned to dread Christmas. It scared the shit out of me.

In December 1998, six months after my daughter Kaitlin was born, I had my first fever. It was a whopper, 103 and change. I didn’t feel well, then body shaking, teeth chattering, chills. For the next two years, like clockwork, every three months or so, I’d get a raging fever and night sweats.

In the Fall of 2000, my body shut down. The coughing, itching and fevers wouldn’t stop. I went to see a chest specialist. He ordered every test in the book and a full body CT scan. He told me I may have cancer, probably some kind of lymphoma, given my symptoms and the fact the lymph glands in my abdomen were the size of hand grenades. I was 34 years old.

My parents joined me, my wife and daughter for Thanksgiving. The biopsy surgery was scheduled for early the next day. There didn’t seem much to be thankful for.

Christmas No. 1

A lymph gland in my chest was taken out and biopsied. It was Hodgkin’s lymphoma. I started Stanford V treatment, I think the second week of December. I had twelve straight weeks of chemo.

Kaitlin, my daughter, was clueless about my illness. She was a cute little kid, enjoying her second Christmas. It was an all day affair. Open something, play with it, open something, play with it…

I was scared, but hopeful, that Christmas. Yes, I was diagnosed at the most advanced stage of the disease, but I had a really good doctor, and I was tolerating treatment pretty well. After the chemo, radiation was next. My radiation doctor and I reviewed the latest CT scan. “Your tumors responded beautifully,” he told me. I felt great. Three and a half weeks of radiation to put the nails in the cancer’s coffin.

Christmas No. 2

In October 2001, I had my six month check up after radiation was done. I had a dry cough that wouldn’t go away, but otherwise, I felt fine. After a chest x-ray, my oncologist told me he thought the cancer had returned to my lungs, and left the room. Maybe that’s how he learned to deliver bad news. Let me deal with it myself. He re-emerged and we talked about what to do next. More chemo and an autologous stem cell transplant.

Again, the second week of December, more chemo. “Salvage” chemo, like your body is trying to be salvaged. A more sexy name is “de-bulking” chemo. This isn’t namby pamby out patient chemo. This was ICE, inpatient, constant drip for 72 hours. I did well with Stanford V. ICE kicked my ass.

I got a couple weeks off. My second round was scheduled the last week of the month, the week after Christmas. Yes, another Christmas with cancer. Another Christmas spent trying not to think about dying, or having a daughter grow up without me. A Christmas without hair. To be honest, I don’t remember much about that Christmas. It was the three of us, Kaitlin had fun, my wife and I tried to live for the moment. Another long Christmas for my daughter. Open something, play with it, open something, play with it….

My fears seemed to be coming true. Being treated for cancer is bad enough, but there’s always that fear that if it does clear up, it’ll come back. For me, that’s just what happened. But, I was still a father and a husband. It was Christmas, and I did my best to get in the seasonal spirit.

The next week, another 72 hours of ICE, nausea, exhaustion and general, all around misery. One thing I’ve learned about cancer treatment, if you can tolerate misery, you’re more than half way home.

That wasn’t enough misery. Two rounds of ICE only got half the job done. Went to another hospital for the transplant, had another miserable round of inpatient chemo (this time, DI-CE) which seemed to clear up the tumors. I moved onto getting blood stem cells removed, high does chemo (six straight days of chemo), then getting my stem cells put back. It wasn’t as bad as I’d feared, but it was pretty awful, like a month long hangover. The process was like going on a month long bender with none of the benefits.

But I was back in remission. That’s all that mattered. I tried to keep positive thoughts.

Christmas No. 3

I got the call in early December 2002. I was at work. The transplant coordinator gave me the latest CT scan results. Three tumors were in my liver. I was shocked. I had no symptoms. It also looked like I was running out of time. As far as I was concerned, this was no longer an uphill battle, I was facing a cliff.

Afterwards, I remember looking at myself in the mirror and thinking, this is how a dying man looks. I am dying of cancer, and this is how I look. Visions of being bed ridden, with fevers, night sweats, coughing and itchy skin utterly out of control ran through my head. I started planning my funeral.

My doctor told me my last hope for a cure was an allogeneic bone marrow transplant. I’d undergo chemo to (hopefully) get into remission and bone marrow from a donor (hopefully one that’s related) would be infused. That new marrow would produce a new immune system, which is supposed to kill off any remaining cancer cells. The new immune system could also attack my healthy tissue, too. Immune systems attack foreign things lurking in the body. If it comes from someone else, your whole body is foreign. It’s my understanding that an allogeneic bone marrow transplant is the riskiest kind of medical procedure you could have. That why only those of us facing certain death undergo it.

Christmas was not fun for me. We bought a video camera, so Kaitlin would have some video of me, her departed father. She was four at the time. I didn’t think she’d remember me if I died. Dads are supposed to have fantasies about their daughter graduating college, getting married, having kids of her own. I didn’t think I’d be around to see her get through elementary school.

January was the time of second opinions (and also of my 37^th birthday). One was, “There’s no easy way to tell you this, so I’ll just come out and say it. You’ll never get rid of this disease.” That is the easy way to say it. This doctor could’ve told me, this disease will kill you and there’s nothing you can do about it. He told me he’d never had a patient cured with an allogeneic bone marrow transplant. The second, second opinion was that the transplant may cure me, but no one could really say what my chances were. He estimated, without a transplant, I’d be dead in a year.

Kids don’t learn by what you tell them. You teach them by what you do and how you act. I figured, if I couldn’t teach Kaitlin by how I lived, I’d teach her by how I died. If I was going down, I was going down swinging. I had more chemo, got into remission number three in March 2003. My brother and sister were tested to see if they were a good match to donate bone marrow. My sister was, my brother was not. I had the transplant in May 2003.

Christmas No. 4

November 2003 was time for a follow up CT/PET scan. Once again, the end of the year, the time for bad news, pain, fear, dread and sometimes, terror. The time when death seemed to be just over my shoulder. Winter was the time for cancer. My original diagnosis and my two relapses were discovered in November or December. Here I was, all over again, in November, waiting for news. Insanity is doing the same thing over and over but expecting a different result. I’d been treated for cancer over and over, but it came back over and over. Why would this time be any different?

After the scan, my wife and I sat in my doctor’s waiting room. I was shaking and crying, convinced more bad news was coming. After all, it was November, and Christmas was just around the corner. Only this time, there would be no second or third chances. This was going to be the bad news that ended all bad news.

There was no bad news. No signs of cancer, and the blood tests showed my new immune system was hard at work, especially in my liver, where the last tumors were found. Christmas 2003 was like breathing fresh air again. I didn’t seem to have a care in the world. I started thinking I was really going to beat cancer, maybe even grow old, and help my daughter grow up. I’ve been in remission since March 2003.

Brother Bart

Thankfully, he wasn’t my bone marrow donor, because he was diagnosed with multiple myeloma in June 2004. He had two more Christmases with his wife, three sons, friends and family. Shortly after Thanksgiving 2006, his wife called, saying Bart had weeks to live. He died in early December, at the age of 46. His wake and funeral were about ten days before Christmas. 2006 was my first Christmas without my brother. Because Bart’s not here, cancer is with us every Christmas.