You are my sunshine

My dad and I have always had a special relationship. I have been daddy's girl since I was born. He was my hero, my protector, my everything. When he would go to work, I would sit on the curb and play with his pajamas until he came home. And when he arrived, it was like Christmas and my birthday everyday. In second grade, I even shaved my face the day before school pictures so that I could be handsome like my daddy. I wish I had the photo, but needless to say, I had cuts all over my face in that school picture.

There is one memory that stands out above the others. My dad is a very hardworking man. He immigrated to the United States with nothing, and now has built his own business. That doesn't happen by accident. He worked hard, long hours, then and now. So he wasn't able to be around as much as other dads were when I was growing up. But one evening, we were sitting in our backyard, and he asked me if I knew the song, "You are my Sunshine."

I replied no, and he began to teach me that song, line by line, until we were singing together, over and over again. Just me and my dad, having some father-daughter time. It is one of my most favorite memories, and one of my favorite songs.

Fast forward a few years, and here I am -- all grown up, and yet sometimes I feel as helpless as that little girl who idolized her father. I began my third cycle of chemo on Wednesday. It was horrendous, and it still is. Chemotherapy is typified by nausea, but it seemed like the Zofran and Compazine were really keeping it under control until now. I guess it was only a matter of time before it all caught up with me.

The neuropathy (needle-like pricks of pain) was bad. It was more intense than before. Even holding a glass of water was too much; the pain was so intense it felt like it was shattering in my hand instead of placidly holding liquid. All the while, the nausea roiled and built in my belly until I ran to the bathroom to heave like I've never heaved before. Twice. Joe suggested I try walking, which actually helped the neuropathy in my legs. But my hands continued to sting incessantly with pain.

Fortunately, the neuropathy had resolved itself by the next morning, and I felt a bit better. I was exhausted, but at least I could use my hands. I had an appointment to see my oncologist, and it was then that I found out that if I wasn't going to take the transplant option, I needed to complete all 6 cycles of the chemo. Perfect timing.

It's Monday now, and the side effects just keep coming. Mucositis (inflammation and ulceration of the mucous membranes lining the digestive tract) has sunk in for the last few of days, and I'm unable to eat anything. I cannot even drink water without pain. I cannot taste anything, and the texture of food is like sawdust. Weird, right? I actually spit out chocolate cake. Who spits out chocolate cake?

This is one of the first times my parents have seen me in real pain. I try to hide it most of the time, but it was so consuming this time I couldn't downplay it. I saw my dad make almost an imperceptible grimace when he saw me. It hurt him so much to see me in pain. He has been quiet source of support in all of this. He seems to understand that peppering me with questions just worsens my stress. But I could tell it hurt him to see me.

Yesterday we went over to my parent's house, and I immediately lay down on the couch, too tired to even pretend I felt alright. I lay there, curled up, but when I reached out to grab his hand he immediately came over to sit next to me. I closed my eyes, pretending to rest. But all I could hear in my head was the song, "You are my sunshine, my only sunshine..." and silent tears slipped through my closed lids. I was afraid to look at him, afraid he'd see my tears. But I felt his pain.

He gave me a letter today. It detailed all his hopes for what he wants me to do during this time. He is so observant and he notices everything that has been going on. He is worried I am not accepting that I am sick, and that I am doing too much.

"I hope you think about your life, not only for today or tomorrow, but in future. Try to draw a bigger picture for your future. When you take care of yourself for a few months [then] there is nothing to worry about all of us. You want to concentrate to fight over lymphoma for a few months and be healthier than before. All we want for you is to recover and be healthier as soon as possible. You don't need to drag yourself to take care of us while you are suffering from sickness and weakness due to the chemotherapy and medication. Please don't pretend you are not sick or not in weakness. We all know you do that sometimes. Most of times.

I really hope you understand and read our mind. All we want from you is that you take good care of yourself very well and see you healthier than ever so all of us can enjoy our life with you. That's all."

He does know me so well. I know I do try to go on like I am not sick. But to give in to the sickness would make me so sad. I have to fight it, and keep fighting it. I refuse to be that sick person if I can help it. I know that I am fighting a difficult disease, and that I'm not the woman I used to be. But I will become stronger.

"You are my sunshine, my only sunshine.

You make me happy, when skies are gray.

You never know, dear, how much I love you.

Please don't take my sunshine away."

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

I had the best day with you today

Last week was rough. The second round of chemo has almost kicked my ass, but by sheer will and Korean determination, I fought the C-Beast the best I could.

Those of you who know me, know how hard it was for my friends and family members to convince me I needed to hire someone to help me. My mother was the one who finally convinced me, although she probably doesn't know it. I leaned on my mother heavily for help with Evan prior to chemo, and I could see how fatigued she was. Taking care of Evan exhausted me before the cancer diagnosis, and I am 36 years old. I don't want cancer to potentially take two victims! So, we hired Katie to come and help me with Evan and the household chores. She has been great. She is hardworking, smart, and great with Evan.

But, old habits die hard, and although I could not have gotten through last week without Katie, I still have a hard time letting Evan go. I still insist on running all the the errands and going to all his classes together. I am so afraid of missing out on any part of his little life. It had always been just the two of us. And now that he is talking more, comprehending more, and being so sweet and charming, I don't want to miss out on a single moment. Obviously, this has become very difficult, particularly when I am feeling badly. Even going to the grocery store is difficult; I get winded just carrying him from the parking lot to the store. Katie tries to take Evan when she sees how exhausted I'm getting, but he refuses to go to her as long as I'm nearby. I know that my being around makes it harder for her to care for Evan, but I can't seem to help it. I don't want to leave him. I am his mother and I want to take care of him, even when I'm physically able to. It is irrational, but it is what motherhood means to me.

Today was the first day I had with Evan all by myself. I'm near the end of my second cycle, and my pain is somewhat manageable. It was glorious; just the two of us again. We spent the morning playing at our local My Gym, then went to the store where he rode the grocery cart with the car attached to the front for the first time. What a blast! He only protested when I would stop the cart for groceries. I quickly depleted my little store of energy pushing him around, but it was worth it to see his face. Every new marvel, every humorous happenstance, registers on his face like blips of joy on a heart monitor. We finally found our way home where he ate lunch on my lap, and I cradled him as we spun back and forth on our kitchen barstool together. Cuddle time gave way to a brave backyard expedition, stomping around in his shiny red boots until his little body was ready to rest.

I set him down in his crib and we read through the Book of Sleep together, where my genius boy identified the owl, the whale, and the moon. Story time rides on the heels of nap time, though, and pretty soon he looked up and said, "Bye-bye!" I knew that was my cue to let our little man sleep.

"Kiss?" I asked. He lifted up his face.

* * * * * *

And now here I am, exhausted, but the memory of his little kiss reminds me that I wouldn't have traded today for anything. I had the best day with you today, Evan. Mommy loves you, so much.

My darling boy

My sister

"Unnee, can I hug you?" a small voice asks. Catherine looks up at her older sister hopefully.

Elizabeth groans. Her little sister is always such a pest. She looks down at Catherine, and relents. But just a bit. 'Okay, you can hug my pinky."

Catherine looks slightly disappointed, but still happy to get something. "Okay," she says. She grabs Elizabeth's pinky with a fierceness and intensity that is unusual for a 5 year old. "I love you, love you, love you, Unnee!" she squeals with glee as she hugs her sister's finger.

*     *     *     *     *     *

My sister and I have always been close. She is affectionate; I am not. She is sweet; I am...not so sweet. But one thing I know is that I have always been is her big sister. But now that I am sick, I find that, more and more, she is taking care of me. It's disconcerting, to say the least. I would protect her from everyone and everything, but now I seem unable to.

It was a complete shock when I first learned of my cancer. I had a growth on the side of my jawline. Although I had a history of tumors coming and going for the past 4 years, it was never cancer, and they always went away after a few months. This was no different. The doctor had, however, insisted on getting me into the operating room for an incisional biopsy. I was reluctant to have a long ugly scar along my neck, but the doctor persisted with a quiet patience that eventually overcame my opposition. So a scar was made along my neck, my sister had flew in, and we awaited the results of the biopsy.

My sister had flown in the night before on the late night flight from Washington, D.C. She knew that the results were due to come out any day now and wanted to be around as much as possible, just in case. This is the same sister who cleared her busy schedule two weeks prior to my due date with Evan, just in case. And she was right -- he was born two weeks early. She is forever prepared.

My mother was over at the house as well. She has been a constant figure since the tumor on the side of my neck appeared. I must admit, the swelling was bad, and just getting worse. She had been concerned about the tumors from the beginning and was not handling this latest appearance very well. She would look at me with sad eyes, and then try to get me to eat something. Quite frankly, I could hardly move my neck at this point, and with two additional lumps appearing on my legs, she probably had reason for concern. But it was never cancer before, and I waited for the results with surprisingly little worry.

My phone beeps. An email notification. I look at who it is from, and it is an email from my doctor. I open up my laptop at the kitchen counter. My sister is playing with Evan and my mom is at my stove, perpetually making me food. I click on the email, and I see the first few lines, which customarily state the diagnosis. The pathology report reads, "Final Pathologic Diagnosis: 1) Subcutaneous Panniculitis-like T-Cell Lyphoma."

I was in shock. Lymphoma is cancer. My mother was watching me closely, and I had nowhere to go. I did not want to shock my mother. 

"Is everything okay? Is that the report?" My mother asked quietly, her eyes boring into mine. 

"Yeah, everything is okay," I say, still in shock. I knew my mother realized something was wrong, but I needed to get away.

I grabbed my phone, and went upstairs. I called Joe, but he did not answer. I realized that he was probably in surgery, but I hung up and dialed again. Voicemail.

I went downstairs, because I did not know what to do with myself. I finally saw my sister, who was also watching me. She had heard the entire exchange between my mother and I.

I look at her. At last, relief. I needed to tell somebody. I went to her and told her quietly. "It's cancer. I haven't told Mom." I couldn't look at my sister's face. "I have to call Joe." I went outside and dialed again. Joe picked up.

"Joe, Joe, Joe. It's cancer. They say it is cancer," I whisper, my voice shaking, and my breath heaving. Tears silently run down my face, but I refuse to give in to sobbing. "They said it wasn't likely to be cancer, but it is cancer. It's lymphoma."

"Oh," Joe says. I know he is in shock. "I knew something was wrong. The doctor called me, and then you called me a couple of times, and I knew that it would be bad news." 

"What are we going to do? It is cancer." I say again, barely even whispering.

"We are going to make it. We have each other, and we will get through this just like we get through everything. This isn't the first time life has presented us with challenges. Trust me, we'll be fine."

"Okay. Okay," I say, gathering myself. "I have to go back inside the house. I just dropped the news to my sister, and left without talking to her."

I go back inside the house, and I see my sister. Her eyes look a bit shiny, and I find I can't look at her for very long because it makes me so sad to cause my baby sister pain. "I'm sorry, Catherine. You must be in shock."

"Yeah, but I knew something was really wrong when I heard you talking to Umma. Did you talk to Joe?" she asks. Her resolve burns through the unshed tears. She is my sister, after all. 

"Yeah, but I think we have to tell Umma. She knows something is wrong, and I just left." I say. We approach my mother in the kitchen. She has lost all pretense of cooking, and is just standing still in front of the stove, staring down at the pan. Worry creases her face as she turns to watch us walk in. 

"What happened? Did the biopsy results come out?" There's a slight tremor in her voice.

"Umma," I say quietly. I walk over to her and hold her arms. "They say it is cancer." I move my arms around to hug her, but she just stands there, unresponsive. I lean back. "Umma?"

She is silent, her face immobile for a few long seconds. And then her face crumples. "You said it wasn't going to be cancer. You said it wasn't cancer, and that it was like last time. You said it wasn't cancer. How could this be? Is this really happening right now?" she starts sobbing, a loud guttural cry that hits me through the heart. My sister and I start to cry as she lifts her head back and wails to the ceiling. It's hard seeing your mother in so much pain, especially when you are the cause of it.

"We will be okay, Umma. I am so strong. I can make it through this, don't worry." I try to respond as firmly as I can, as if I could dilute her pain with confidence. I always gain strength when I feel like I'm needed, particularly when it involves the people I love. But even as I embrace her, I can feel my own fear and my own pain riding just below the surface, amplified because I know I'm the cause of my mother's tears. My sister joins us as we hold each other, grieving, knowing that things will never be the same.

*     *     *     *     *     *

Since my diagnosis, my sister has been here with me through it all. She has been with me just as much as, if not more than Joe. She took a leave of absence from work, and has been here since my first round of chemo. She watches me like a hawk. She knows I'm in pain before I even utter a moan. She literally caught me when I collapsed from the pain of the neupogen expanding the marrow of my bones, and then ran to get Joe so he could take me to the emergency room. Before I was thirsty, she would have a glass of water at the ready, within reach. If my phone dinged with an email of text message, she went to get my phone for me before I even had a chance to look for it. She was always there, watching, observing, and taking care of me.

I don't know what I would have done without her. She's leaving to go back to work, and I am sad she is leaving. I will miss her companionship, her constant and tireless love, and her devotion to me. I am not used to being on the receiving end of help. I generally do not ask for help, nor do I accept it very well. I am the older sister, the eldest cousin, and usually the eldest friend in my groups. I am comfortable carrying the mantle of responsibility and feel exposed without it. But this time, my sister did not give me a choice, and she gave me the best gift a sister ever could.

I thought I knew my sister inside and out, but she revealed a depth and caring that I never fully realized until now. It feels odd to be on the receiving end of it. Perhaps this is what the irrepressible desire to love and show love that characterized her as a child evolved into as she became an adult. For the first time, I leaned upon my baby sister and discovered that she was strong enough to hold me up. I am so proud of the person that she is. Thank you, Catherine. From the bottom of my heart. You are the best sister and best friend anyone could ever have. 

My baby sister

Yes baby, chemo sucks

I have now discovered that the second round of chemo is vastly different from the first round. I had some serious reactions after my toxic doses of chemotherapy yesterday, which included the red syringe of death and vincristine. I had full grade nausea, unable to be controlled even with two doses of my anti-nausea medication and its backup counterpart (zofran and compazine for the medically-minded). I was, however, managing to keep things relatively under control until around 8pm, when I started getting some tingles and pinpricks in my hands. Soon enough, the tiny needles radiated from my hands to my arms. From my feet to my legs. And then from my chest to my face. It's like when your leg falls asleep, and you're stuck at that point where your skin is crawling with pricks just waiting for the blood to rush back in and provide some relief. Except it never does.

I felt bad.

So naturally, I conduct a little research, and find that vincristine (a chemo drug as toxic as the red syringe of death, albeit less painful at the time of infusion), caused peripheral neuropathy. What? I know about peripheral neuropathy. I encountered cases as a medical malpractice defense attorney where plaintiffs suffered from peripheral neuropathy as an unintended but fully disclosed complication. It's when the nerves in your hands, arms, or legs go numb. It is usually temporary, but can sometimes be permanent, causing lasting damage to your nerves. I started to panic. For every prick in my hands, my feet, my arms, my legs, my face, I wondered -- could that be a place where I lost feeling?

I had excused myself to go to bed earlier in the evening, so I had been upstairs while Joe and my sister remained awake downstairs. I texted them, "My hands, arms and feet are numb. I have peripheral neuropathy."

I hear Catherine and Joe speaking in muffled voices. Slowly, I hear Joe's slow, deliberate steps trudging up the stairs, down the hall, and he finally enters our dark bedroom. "I have peripheral neuropathy," I say, trying to keep the panic from my voice. Knowing me as well as he does, he already knew from my text that I was panicking.

"Well," he says, in his calm, doctor voice which, by the way, always seems to rile me up. "What makes you say that? What are your symptoms?" he asks softly.

I try to keep the irritation out of my voice. "I have numbness from my hands radiating up my arms, my feet up my legs, and am starting to have numbness in my chest and face as well. I looked it up, and I have peripheral neuropathy," I said, crossly. I was nauseous, and feeling terrible inside and out. It almost seemed like I could feel the poison building up in my body. Why was he so exasperatingly calm?

He switched on the lamp. "Ok, your symptoms don't present as peripheral neuropathy. It sounds more like paresthesia, with the pinpricks, rather than loss of feeling in the fingers and feet. But, let's look it up," he says in that same calm voice.

I grab my phone and start looking up paresthesia myself. I quickly read through the search results. "It looks like paresthesia is a form of peripheral neuropathy," I say impatiently.

Joe is quietly and methodically reading through his own search results, and wisely ignores me.  I am a faster reader by far, but he is a more deliberate one. "Honey," he finally says, "you have paresthesia, and it most likely temporary. Do you want to call the nurse at the hospital and see what they can do?" he asks.

"Well, what can they do? Is there a medication they can give me?"

"You can take glutamine, 500 mg a day to help with the symptoms. You can pick some up at GNC tomorrow. But make sure you clear it with the doctor when you go in for chemo."

"It says it can be permanent," I whisper, scared. I'm suddenly glad that he is so calm and knowledgeable.

"Babe, it happens to abut 50% of chemo patients, and sometimes it is permanent. But that is really rare," he says, moving in to hold me.

"How do you know all of this?" I ask sadly. "You are kind of amazing."

"When the colorectal cancer patients go through chemo, a lot of them have paresthesia as well, and it usually does resolve. Just give it some time."

"Okay. I feel so badly. I am so nauseous, and I can't sleep because of the paresthesia," I murmur, miserable.  "Chemo sucks."

"Yes, baby. Chemo sucks." He continued to hold me as the pricks traveled up and down my body. We lay together, hoping the chemo causing all this pain will be the same chemo to cure my cancer.

New year, new start, same chemo

Happy New Year! This year, my sister, Joe, and I decided to spend New Year's Eve having dinner with Sharon and Ramin. It was a very low key evening with delicious food, and great company. They keep telling me that I'll feel the best right before beginning my next round of chemotherapy, so why not go out for a nice evening? I had until the morning of January 2, so I might as well enjoy our last meal of 2012.

2013, here we come!

The next day, on New Year's, we had another low key family day at my parent's house where we dressed in traditional Korean clothes (hanbok), and ate rice cake and dumpling soup.

Gangnam style!

Of course, even as the hours ticked down on 2012 and started up on 2013, January 2 came closer and closer. So, this morning I started my second cycle of chemo. The red syringe of death was back, this time in two vials rather than one, which surprised me a bit. (They had half the dosage in each, though). It was as painful as ever. I was, of course, the youngest person there. (At least I can say I was the youngest one somewhere. I am usually one of the oldest all the time.) Joe, who is perpetually busy at work, but had made arrangements so he could attend the first day of chemo at each cycle. The first day has the biggest dose of chemo, and the red syringe of death is hard to take without him there. I am glad Joe made time for this. I had initially told him not to worry about coming to chemo, as I know how busy he is and how much his patients mean to him. But truth be told, I was secretly so relieved when he told me that everyone was being supportive, and he was able to come for the first day of chemo for all my cycles. As a family friend who had gone through chemo himself noted, there's something about that pain that you can never forget. It's like acid traveling up your veins. I am lucky that Joe is able to come. And my sister was there, as always.

Ouch. Really. Ouch.

There is something very disheartening about starting the new year with chemo. It' s not the best way to begin a brand new 2013. But I have to remind myself that while I start the year with a bald head and a heavy heart, I will end the year healthy. I'll probably still be bald or close to bald, but it is not a bad ending.

I've come to realize that health is something that we can never take for granted, either for ourselves or for others. My father-in-law was at a car dealership recently, after dealing with a bout of gastroenteritis (also known as the stomach flu). It's a pretty nasty condition, but he felt well enough to go with Mom to get her a new car. But just as they were sitting down at a desk to go through the necessary paperwork, he felt dizzy...and then fainted. He returned to consciousness with the sight of several car salesmen as well as a very worried wife staring down at him. He looked up and dryly noted, "It must have been the sticker shock." Everyone, of course, just started roaring with laughter. It turned out that he was fine, he was just a bit dehydrated from his bout with gastroenteritis. But it did remind us all, very soberly, that we should never take our health for granted.

We are now trying to decide if we are going to go through with a stem cell (also know as bone marrow) transplant. I am still going to need a total of 4-6 cycles of chemo, but they want to start evaluating for stem cell transplant early on. It has been strongly urged and recommended by my oncologist; however, it is a lengthy and dangerous procedure and I'm not too keen on undertaking such a painful task with such high risk. It entails a massive dose of chemo to kill all the cells in my bone marrow -- both healthy and not -- and then inject new, healthy stem cells to replace the dead ones. It requires hospitalization for about a month, and I am probably going to be under quarantine because I will be extremely susceptible to infections. I cannot imagine not being able to hold my baby, or kiss my husband. Despite our many discussions, I am still not quite sure what to expect if and when I decide to do it, and we must meet with the transplant surgeons to see if what my particular case would entail. Ultimately, we must exercise due diligence and see what all our options are.

The problem with my type of cancer is that it is recurrent by nature. Even when the alternative comes with the prospect of month-long hospitalization and isolation, I do not want to go through chemo ever again. So if stem cell transplant is the answer to no more chemo, then I will seriously consider it. And quite frankly, Joe reminded me that some of my chemo medications have a lifetime limit on them. This means that I can only get a certain amount of that medication in my lifetime, and cannot exceed that amount because of its toxicity.

We are planning on flying out to Stanford for a consultation with the head of their Multidisciplinary Cutaneous Lymphoma Group. We're pretty lucky to have that kind of a consult as an option given the rarity of my cancer. The doctor we're meeting with headed a study for a new type of chemo drug for my type of lymphoma. Speaking with them may help us understand what all our options are, and whether the stem cell transplant is really the right choice. To paraphrase my very wise father-in-law, we will see what the transplant people say, and it just may be too much "sticker shock" to actually go through with it. But, on the other hand, we must pay the price for what we want. He ended up buying the car that day, despite his "sticker shock," because it was something they needed to get done and that was their opportunity to do it. I want to be healthy. I want to be well. And I want to stay well. So I may just have to buy the car to do it.

Every year comes with a fresh start, but for better or worse, we're still carrying our baggage from the year before. Here's to ringing in the new year with chemo, and hopefully leaving it with a fresh new sprout of hair on this head. Happy 2013, everyone!

Yes, this is a wig!