Pandora's Box

So much has happened... where to begin?

Some of you may remember that my doctors have been pushing for a stem cell (also known as bone marrow) transplant. It has been a shadow looming over me since before I began my chemo. Transplant is a very dramatic, month-long procedure where they give me a mega dose of chemo so strong that it kills all cells -- both healthy and cancerous -- and then transplant either my own bone marrow (that they harvest prior to the transplant) or a donor's. I will be in the hospital for at least one month, during which I will be separated from everyone because I will be so susceptible to infections. When my body finally begins making its own cells the pain will be so bad that I'll be in and out of consciousness, drugged up and drugged out from the pain medication. How's that for a horror story? It's like I'm Frankenstein, the cancer edition.

Our silver anniversary

Make no mistake, though; if transplant is my only option to avoid doing this chemo again, I will seriously consider it. However, the initial question must be: Is transplant the right treatment for me?

Last Friday, I flew up to Stanford to meet with a doctor who was the lead author on a study for a new drug to treat my type of lymphoma. She also happens to be the head of the Cutaneous Lymphoma Group at Stanford. Joe, being the wonderful and amazing husband that he is, made all the arrangements, cleared our insurance, dissected and re-packaged all my medical records into a relevant format, and sent it all up to Stanford before the appointment. And then off we went.

First of all, you all should know that these trips are very stressful. We never know what the doctor is going to say. Bad news could come at any time, and wondering if this is the moment we discover something terrible is pretty stressful. Especially for Joe. As a surgeon, Joe is used to being in control of all things pertaining to medicine. Cancer is unpredictable by its very nature, but my particular kind is even harder to track because so little is known about it. I know it makes him worry.

Granted, it didn't really help that I was 15 minutes behind schedule. Not that this was a huge amount of time, but it made Joe extremely anxious. Like, having an anxiety attack anxious. I thought he was going to explode the whole ride there, and especially during the security line. And the anxiety did not lessen once we got on the plane. It just escalated.

By the time we got off the plane and hailed a cab, I could sense an even higher level of anxiety from Joe. We finally get to the hospital, but he looks even more upset as the cab drives off. I simply can't stand it anymore and turn to him.

"Honey, what is wrong?"

He looks at me, obviously very, very, agitated. "Honey, you have to be on time for these things. I arranged everything down to the very last detail. I feel like we have no control over what's going on -- being organized is the only thing that helps me get through these appointments. But when you're late, it throws everything off schedule, and I can't regain my organization. And," he added, "I really wanted to rent a car, but you insisted on a taxi and now we're stuck here, with no transportation back to the airport. God knows how long it'll take another taxi to get here. You have to cooperate with me. I almost had an anxiety attack today. Please." He looked at me, upset.

I immediately felt myself become defensive. It's stressful for me, too. These appointments are no picnic, you know. But, I calmed myself down. He's arranged everything for me. Not just for this trip, but for all of my treatments. He rearranged his work schedule to make it to the red syringe of death chemo days, and all of my appointments. He really has done everything. I should have been on time, and I should have made it easier for him.

"You're right, honey. I'm sorry I was late. I'll try harder next time to be on time. But you have to get over it. This is stressful all around, and we need to stay together on this," I pleaded.

I felt his tension ease a bit. "Okay. Thank you, honey. I know it's a tough situation. I appreciate it."

A few moments later, we checked in with the receptionist. "Do you have any scans you would like to give the doctor to review before your appointment?" she asked.

Oh. We did, but I hadn't brought them with us. I was surprised to see Joe, however, produce a disc with copies of all the scans. Wow. He was really prepared.

The receptionist looked at the disc. "Do you have a sleeve for the disc? I'm afraid it might get scratched."

"Yes, I have one in my bag," Joe replied.

This was the straw that broke the camel's back. The magnitude of how much he loved me felt overwhelming as he produced a small plastic sleeve for the CD. He'd really prepared for everything, even down to this last, seemingly unimportant detail. My eyes filled with tears as we sat down in the waiting room, and I turned to him.

"Honey, I am so sorry I was late and stressed you out. You show me all the time how much you love me. You planned everything out, even bringing a sleeve for the scans. I love you." It was an unusual moment -- I don't really get very emotional, and it's not easy for me to speak about my feelings with such raw emotion.

He turned to me. "Honey," he said quietly.

"Yes, sweetheart?"

"Please don't lose it in the waiting room. Pull it together," he said with a smile, and laughed.

I started laughing too. "Okay, you're totally right. I'm such a weirdo, losing it because of a stupid CD sleeve," I said, surreptitiously wiping the tears from my eyes.

"It's one of the many reasons I love you. Weirdo," he said, smiling.

After a short wait, we met with Dr. Lee, a very pleasant Korean doctor who put us at ease right away. Right off the bat, I could tell that she was extremely familiar with my previous symptoms, and she discussed my cancer with a knowledge and efficiency that every doctor we'd met before her had lacked. And even better, she assessed that it was premature to go through a transplant at this time, which was incredibly reassuring. It's our first encounter with this cancer, so it's hard to predict what it's nature is. If it recurs within 6 months post-chemo, we'll know that we have a more virulent form of lymphoma. She did stress that it would be helpful to get all the testing for typing done early on, so that if the time comes, we have it ready to go. The most reassuring addition was the fact that she named several new chemo treatments for my cancer. The side effects would be significantly fewer than my current chemo regimen, and they would be alternatives for me should the cancer return.

Our visit to Stanford was followed, a few days later, by a consult with a transplant physician in LA. I tried very hard to be on time, but still managed to be 10 minutes late. It couldn't be helped -- a physician friend of ours needed some legal help and I had to make a few phone calls on his behalf. Joe tried really hard not to get upset, though, and off we went again. After a very thorough history and physical, the transplant physician ultimately came to the same conclusion that Dr. Lee did, which was very reassuring. He made sure that I had the orders to get tested (they took 11 vials of blood!), and sent my sister a stem cell typing kit so we can determine if she is a match. What a relief!

My cheer was slightly marred by the news from my oncologist who, despite agreeing with their recommendations, informed me that if I wasn't going to do a transplant, I needed to complete all 6 rounds of chemo. It was...disheartening. The side effects are crescendoing each cycle, increasing in virulence, length, and speed of presentation. I am dreading each and every cycle. But, on the bright side, at least I don't have to get a transplant. Well, for now.

My family and friends had different reactions to the decision not to transplant. For myself, all I felt was immediate relief. I absolutely did not want to do a transplant, not because I was afraid of the transplant itself, but because I didn't want to be away from my family for a month. I wouldn't even be able to see Evan. How could I stand that? The nurse tried to reassure me by telling me I'd be so heavily medicated I wouldn't even realize I was missing him. How is that better?

But my mom and dad were discouraged. They are of the old school Korean mentality where even though the battle may be hard fought, all the pain and suffering would be worth it if victory could be achieved. They believed (as I did initially) that the transplant would cure my cancer. Therefore, even though it would have been dangerous and difficult, it would have ended my illness and brought this difficult chapter of our lives to a close. And now there is no cure. There's just a "wait and see" approach, leaving them anxious and worried about what the future might bring.

My parents have been so upset, stressed, concerned, and afraid during my diagnosis and treatment. I am almost unable to look them in the face. The guilt I feel knows no bounds. It's hard for me to express those kinds of emotions, though, so my guilt translates itself into annoyance and anger. It's unfair and I know it, but I can't help but wish that their love for me could bring them the happiness they deserve, instead of all this pain. They have been such a strong source of support for me through all of this. Seeing my mother's face wrinkle in pain when she hears I've had a rough day is enough to send me down a guilt spiral. Even when we don't speak, I can see the sadness on her face whenever she looks at me.   I cannot stand it; I cannot face it. How do I deal? How do I help my mother? No one knows pain like a mother knows pain when her child is sick. I feel like I can understand her now that I have a child of my own. But how do I address it? How do I resolve it? I guess my only option is to get better, and do everything I can to prevent the cancer from recurring. But imagining her anxiety about its recurrence; seeing her slave away to make some wonder food that is "guaranteed" heal my body; feeling her shoulders tighten in stress if I even hiccup; these are hard enough now without thinking about them recurring for the next 30-50 years. I want my mom and dad to be at peace, even though I know it's impossible while I'm still ill. My mother and I are so similar in nature that we tend to be the best of friends, but we also fight with a passion unparalleled in our family. I guess as long as we are both alive and kicking, we will love each other and fight each other until the day we die. We nag, we fight, but we also laugh, and love. And as painful as it can be to love someone that much, I hope it never stops.

I love you