Monday, June 10, 2013

Love always, Liz

It is now post-op day 6 and I'm doing much better. I was really surprised at the amount of pain I was in after the surgery, since the biopsy we'd done last year was relatively painless. Joe says it was because, unlike the biopsy, they were rooting around in there looking for cancer, including moving a major muscle out of the way, not to mention removing half an organ (left half of my thyroid) and a 3.5 cm cyst! All that definitely makes sense, but it felt like someone had beaten me black and blue from the inside out.

The pain is a small concession, though, in exchange for the knowledge that I am really and truly cancer free. Hooray! The lab results came in rather quickly, confirming Dr. Shibuya's initial examination that the cyst was not cancerous, despite its size. I feel as if I have been given a new beginning that's different from the feeling I had after my last chemo. Even after the final round, which was pretty terrible, I knew that in just a few short weeks I'd have to deal with this unknown growth inside my neck. And then came the consult with Dr. Shibuya and the news that yet another form of cancer might be creeping over me, like the tenth plague of Passover.

But the surgery has come and gone, and  -- with faith, sacrifice, and hope -- this, too, has passed. Now that we know it's benign, there are no more cysts to check out, no more infusions, and no more pain! Just clear sailing from here on out! Of course, I do have to be vigilant about the lymphoma coming back, but for now, all I want to do is rejoice and feel better. Because I *am* better.

I don't recall much of Monday after the surgery. As my sister's entry mentioned, I had some things to say once under anesthesia. But after the surgery, I was in so much pain, all I remember is seeing Evan. I wanted so badly to open my eyes and see him, but all I could manage is an eyelid flutter. I wanted to hold him, to kiss him. Then I remember seeing my mother. I called out to her (or thought I did), and said in Korean, "I hurt." I remember a tear seeping out of my closed eyelid, and my mother wiping it away. What is it about mothers that reverts you back to a 5 year old? You automatically think that she will know how to make the hurt go away if you tell her where it is.

I remember the nurse asking me if I would like morphine. Despite the pain, I tried to tell him that I didn't want morphine, but I couldn't recall why. I knew that it wouldn't sit well with me. But since I could not talk, and I was obviously in pain, I nodded, and he administered the morphine via IV. Then my body remembered what my mind could not -- the itch! Oh, my goodness, it was merciless, like my body was covered in fire ants crawling all over my skin. I started scratching furiously, even in my reduced state. Thankfully, the nurse was able to counter the morphine with IV-administered Benadryl, which helped significantly, and I was able to sleep through most of the rest of that day.

However, pain medication, like most things in life, only lasts for so long. Soon enough the pain started to return and Joe and my sister started asking me if I wanted to have more medication. I resisted at first, particularly given the reaction I'd had to the morphine earlier that day. But the pain was getting worse, and we all knew it wasn't going to get better. So my sister and Joe flagged the nurse, and after some negotiation over my rejection of the morphine and my inability to swallow pills, he procured me some special ordered liquid hydrocodone. It worked like a charm.

At some point during that day I noticed a bottle partially filled with dark red, viscous liquid. It was just one of several items attached to me via tubes, but it was definitely the only one filled with blood. Joe noticed me looking at it, and I raised my eyebrows to ask him what it was.

"The bottle and tube are there to allow the area they operated on to drain, if needed. Without the drain, it would collect inside your throat and potentially cause a hematoma to block your airway."

He must have noticed my reaction, because he gestured towards a tightly sealed blue package near the bed.

"They keep that sterile set of surgical equipment by the bed just for that reason. The drain helps minimize the pooling, but just in case, we're prepared to do what we need to do in order to protect your airway. I am prepared to open that tray and cut you open to unblock your airway, if needed," he said very seriously.

I touched the outside of the surgical package gingerly.

"See the block stripes?" Joe asked.  I nodded. "That means it's sterile. I'm keeping a close eye on your drain, but be careful. When Evan was on the bed I was really worried that he would pull on it -- the drain is attached to your neck by a small stitch, and even though that's enough to hold the drain in place, it definitely wouldn't have been strong enough to withstand Evan's weight."

Joe paused.

"I know you want to hold Evan, but we'll be home tomorrow. Just be careful when you're with him -- I'm keeping a close eye on the drain but it will be pretty bad if he does something to it."

I nodded. I was surprised at all his forethought and preparation, and all that he was willing to do to take care of me. I was humbled, and made a mental note to stop questioning his advice so much.

The next day, I was able to speak a little better. Dr. Shibuya came by at about 6:40 in the morning to go over what to expect for the next few days and remove my drain, stitch and all. I was scared, but he was swift. It did hurt, but what surprised me more was the strange feeling of having a long, thin tube pulled out of you. The stitch was painful, but the pull was...icky. And long! It must have been almost down to my chest. Ew. But Dr. Shibuya then gave the orders for discharge, which meant that all we had to do was wait for the day nurse to arrive, provide us our prescriptions, and complete the paperwork.

Joe was elated to be leaving the hospital. His happiness during the pack-up and drive home was palpable. We were -- at least initially -- in the clear. The initial examination indicated no cancer, the operation had been completed successfully, and the recovery was going well, without any complications due to a hematoma. We were going home.

I tried to keep it together on the drive, but it was more exhausting than I expected. I crashed on my usual recovery place -- the couch -- and fell fast asleep within minutes of arriving home. I vaguely recall Catherine and Joe bustling about, taking care of errands, making sure everything was in place, and checking my medications to make sure they'd be able to remind me to take them once they were needed. Catherine was headed back home and back to work the next day, so she really wanted to make sure she did everything she could while she was with me.

And, through it all, I slept. I even slept through my friend Natalie's brief visit, during which she stealthily dropped off flowers while Catherine was cleaning the garage and Joe returned calls from the hospital. Catherine later noted that she didn't even realize she'd come by until she stepped back into the house and smelled their beautiful fragrance filling the house! Natalie is always so thoughtful.

By that evening, though, I was awake, in pain, and slightly nauseous from the pain meds. I guess there's no such thing as a free lunch. My sister forced me to take some more pain medication before we went to bed, but it wasn't enough to last until the next morning. I woke up barely able to speak, much less swallow, but by that point was almost grateful to take the medication Joe brought up for me.

I have to say, despite the nausea that sometimes accompanies the medication, the meds are pretty effective at managing my pain. Temporarily. I hate just sitting around doing nothing, so while I could I made Joe and my sister some breakfast. My sister was a bit surprised at the bacon and eggs I pulled together, but I wanted to make sure she ate a good breakfast before flying home.

My sister texted me from the airport and called me in an attempt to force me to rest for the rest of the day, but I've always had difficulty accepting rest as a restorative cure. I slept for a good portion of the day, and apparently was so dazed and sick-looking my friend Sharon left almost as soon as she came by. When I informed her of my plans to go to Fashion Island later to get some air, she gave me a dubious look and advised me to rest.

Needless to say, despite multiple people advising me to take a break, I ventured to Fashion Island where I proceeded to get so sick I threw up in the parking lot. The nausea continued throughout the drive back and when I finally returned home to rest and throw up some more. Sigh. For someone who is supposedly so smart, I can be rather stupid.

By Thursday, though, things were looking better and Joe was able to go back to work. The pain was tolerable in comparison to the morning before, so I started the day without pain medications. My positive trajectory continued throughout the day, and Joe was extremely happy to see me looking so well when he returned home that evening. So happy, in fact, that he said he'd reveal a not-so-little secret he'd been hiding since before the surgery.

My ears perked up. "What do you mean?"

"Remember when I said there are more risks involved with removing both the left and right halves of your thyroid?"

"Yes," I said cautiously.

"And remember when you asked me what would happen if they cut a nerve on one side, I said you'd be hoarse, and when you asked what would happen if they cut the nerve on both sides, I said you'd just be really hoarse?"

"Yes," I said again.

"Well...I wasn't exactly honest about that. If they accidentally cut the laryngeal nerves on both side, you'd be unable to speak and might end up breathing out of a tube indefinitely." He looked both relieved and slightly sheepish.

I couldn't believe what I was hearing. "I can't believe you LIED to me!"

He smiled a bit. "Yes, I did, but I didn't want you to get too worried about such an outside risk. It was important to make sure you were safe."

Go figure. It turns out my husband can be as strategic and stubborn as the attorney he married.

Well, this will be my last blog post. I feel that this chapter is coming to a close, and it is time to say goodbye to cancer, round 1. A new blog may ensue should the lymphoma come back, but for now I will bid you all adieu. Thank you all for all your love and support during these hard times. Because of you, when I look back on this moment in my life, I won't just see cancer or pain. The predominant memories will be of friendship, and of love.

With all my love, always,
Liz

I'll do my best to live up to the example set by all of you. Thank you, so much, for being a part of my journey.

Monday, June 3, 2013

The Physics of Love - A Post-Op Update from Liz's Little Sister

It's less than a minute before 9pm as I begin to write this, and the slightly unfinished look of the clock at 8:59pm seems to suit the occasion. My sister is resting beside me -- well, resting in her own way, which means she is simultaneously catching up on emails, trying to take care of everyone around her, planning activities for the next 24 hours, and providing her *ahem* "recommendations" on how Joe and I might complete our assigned tasks. Which, of course, prove to be the better option (sometimes). I guess no matter how old I get, I'll never catch up to my older sister. I don't know what Joe's excuse is, though. ;)

My sister has asked me to convert my comment to her previous entry into a full-fledged post in order to provide an update to anyone who might have any concerns, and share some of the images from today's smorgasbörd of events. The day started off not-so-bright and early, with my alarm waking me up at 4:15am and theirs going off not long after. Of course, we ended up running late despite our early start and meticulous planning. Fortunately -- or not, depending on your perspective and insurance premiums -- my sister drove. Ergo, after a few sharp turns and a U-turn that, but for my seat belt, would have given me more altitude than the zip line I used to cross a South American river, we ended up at Kaiser right on time to wait in line for another quarter hour.

"I'm going to miss you..." My sister started missing Evan yesterday morning, and spent some time cuddling with him after he woke up. It's like he knew she needed his affection, so he held her close with little touches and kisses. I took a lot of pictures of him throughout the day today to show my sister after she woke up. I knew she'd be missing him.

Only one additional person was allowed back in pre-op, so after they took Joe and my sister away I got settled in Kaiser's second floor waiting lounge. I found myself mildly unnerved by the slightly Clockwork Orange-like ambiance set by the tunes of what I can only call "hospital-Zen," toned against a digital backdrop of flowers and surrounded by Kaiser's special brand of square, retro-70s furniture. It was like they were trying so hard to be soothing you wondered what they were hiding. Sharon stopped by after a little while, and shortly thereafter we were able to join my sister for her consult with Dr. Shibuya and Ramin, Sharon's hubby and Joe's long-time friend. He was looking very professional in his scrubs, armed and ready with a special nerve-detecting tube (think of the kids' game "Operation" but for nerves, with service fee that would have made Parker Brothers cry), and was able to show Joe her full CT and PET scans. Joe inspected the scans and deemed them good; the symmetry of the mass near her left thyroid boded well. A mass filled with fluid with a regular shape is more likely to be benign than a hard, irregular one. But then again, you never know until you know.

Pre-op optimism.
Joe inspects the CT scans as the nurse prepares my sister for her plethora of medical tubes.

After a few short chats and some very funny comments from a rather loopy sister hopped up on Ramin's "truth serum," they wheeled her into surgery. Just in time, too, as she was starting to spill the beans on some of Joe's more embarrassing moments. She did manage to work in yet another reminder to Joe to re-marry, though, filling the room with laughter. I laughed too, but couldn't help but remember that just the year before, my sister filled pre-op with laughter by forbidding Joe from re-marrying at all. The symmetry and difference between the two situations stuck with me, and when I mentioned it to my sister a few hours later, she kind of paused, mulling it over.

"I guess it's just more real now. I didn't think I could die before, but now it feels like it could really happen. I needed to tell Joe what I really felt, inside my heart."

I guess there's some truth to Ramin's truth serum.

After they wheeled my sister away, Joe and I returned to the waiting room for the long, hard wait. I once read of a general who described war as long periods of boredom broken by brief moments of terror. Life in a hospital waiting room isn't always that dramatic -- cue soothing music and digitized flowers -- but there are some aspects that carry over. Fortunately, just a couple hours later Ramin sent Joe a glowing update, and Dr. Shibuya came out to confirm that the surgery had gone very, very smoothly. He was able to remove the cyst whole, and initial inspection indicated that it was benign. Furthermore, they were able to save the right half of her thyroid, which meant no hormone replacement therapy would be needed. That poof sound, by the way, is the bursting of my sister's dream of never having to worry about weight again due to the powers of modern-day medication. C'est la vie...and thank goodness!

Evan is overjoyed to see Joe, his "Abba" (the Korean word for dad), after a night with his Grandparents. He'll stay with them until Wednesday to give my sister a chance to recover. Thank you, Umma and Abba!
Yes. That is yet another toy Cars car. Maybe we should just buy some Disney stock and get it over with; at this point, we're probably accounting for at least half of their sales. It's the only sustainable solution.

My parents joined us with Evan a couple hours later, who had a grand ol' time walking up and down the hospital stairs, playing peek-a-boo around corners with his aunt, and climbing on top of a tired grandfather who gamely attempted to hold him in place as he bounced on the grand-père's stomach with a milk bottle. He's been a little unpredictable with his exuberance lately, so we were all a little nervous that Evan might rush, crowd, or otherwise jostle my sister when we were finally let in to see her in the recovery room. She was tied down in a rather delicate web of tubes, monitors, and drains from the incision in her throat. But his cautious, sensitive self once again surfaced when the situation demanded it. He was so overjoyed to see her that all he could do was smile, laugh, and giggle at her, and -- notwithstanding the stomach-bouncing-milk incident -- was content to just watch his beloved momma while holding her hand. At his and my sister's subsequent request, though, we gingerly placed him on the bed beside her, where he continued to smile and hug her side with gentle love.

A less than successful attempt at a sleep versus play compromise.

It almost hurt to watch them together; my sister was clearly in pain before and after Evan came in, but for those few moments, it was like a cloud lifted and a ray of sun shone  through, warming away some of the burdens that life seems bent on placing upon her shoulders. Sometimes love feels so good in the wake of so much pain it's hard to separate the two, and you're left with a strange mix of joy and sadness. It's a wondrous, beautiful thing. A reminder of how lucky we are to be alive, and to share these moments with the ones we love.

Alright, it's getting a bit late and I'd like to let my sister get some rest, so I'll just close with some final pictures from today and a big, heartfelt thank you to everyone, especially our dear family and all the friends who have been so supportive. You've basically become like our extended family. I also wanted to say thank you to my own support network, who have been so caring and selfless, even when I haven't been able to spend as much time showing you how much I appreciate your presence in my life. I've come to realize in times like these, there is no such thing as a foundation stone. The rock that stands strong, bearing the burden of all other things on its own, is nothing but a myth. Like Newton's theory of the unmoved mover, we are all products of the energy others have given to us, beginning and ending with a force beyond our humble comprehension. We are each just one part of life's lattice of loving relationships, each piece individual and vital to the support structure around it. So thank you, dear ones, and good night.

More hugs from the little tyke in the waiting room.
Squirming, squirming, squirming.
"Umma!" Evan was overcome with happiness and laughed non-stop almost the entire time he was allowed in to see my sister, proving, once more, how rewarding it is to share your life with a child.
So much joy...
And giggles...
And love.

Sunday, June 2, 2013

Okay, okay, so it's probably not a big deal, but...

Sorry it's been a while since my last blog post. That last chemo just about did me in. It took a very, very long time to recover. But, like all bad things, it came to an end. I am gaining back the weight (with a lot of help from bacon cheeseburgers and chocolate cake), and I am able to care for my Evan now.

My friends arranged a celebratory brunch for me at the St. Regis and it was so wonderful to just relax and be with my girls! It was such a treat to get out on a Sunday afternoon and just stay out. Needless to say, a champagne brunch with some hot mamas from Newport Coast resulted in a wild and crazy time. Let's just say that amidst a lot laughter, champagne, and hazy memories, we were able to blow off a little steam and just celebrate the beauty of being alive.

It's getting hot in here!

Yes, these are a Mommy's legs. Not telling whose they are, but what a mighty fine pair!

Nobody celebrates like a group of Newport Coast moms.

* * * * * * *

Even though it's been more than a month since my last chemo, it's effects still seem to linger. Kind of like the aftertaste from a bad batch of burned chocolate. Last weekend was a beautiful, sunny Memorial Day weekend, so Joe and I decided to take our little Evan to the beach. The wind was mild, lively enough to keep the heat off your skin but moderate enough to keep the waves soft and smooth. Ever-cautious, Evan decided he was perfectly content watching the ocean from the safe perch of his parents arms. No matter how many times we tried to convince him to get down and walk among the waves, he was simply not having it. So our sojourn to the beach turned out to be a very long, tiring walk where Joe and I took turns carrying Evan.

Despite the end of my chemo, I find that I get fatigued very easily, and my stamina just isn't what it used to be. I can make it through my days with Evan fairly well, but only if I lay down to rest while he takes his afternoon nap. Carrying and walking with Evan along the beach, though, turned out to be too much, and I collapsed onto the couch when we got home. I fell asleep immediately as soon as Joe took Evan up for his nap. I think Joe was surprised. He didn't realize how fatigued I still got, and I could tell by his expression that he was disappointed. Not disappointed in me, but disappointed that the cancer was still around -- that its presence lingered. He wanted me to start exercising, but I told him I'd like to hold off until after my surgery on Monday.

Okay, yes, I'm having surgery tomorrow. It's probably not a big deal, but I've had a lump in the left half of my thyroid for a while, and it's getting bigger by the day. Significantly bigger.

When we first detected it a few months ago, it was 0.5 centimeters large, but by April it had ballooned to 2.5 centimeters. It is up to over 3 centimeters now. Before my last chemotherapy round, my doctor informed me that it had shown up in my PET scan and recommended that once chemotherapy finished, we should get it checked out. I remember being disappointed that even after chemotherapy, we weren't quite done.

So a couple weeks ago we went back to Dr. Terry Shibuya, who, in my opinion, is the best otolaryngologist there is, and he performed a fine needle aspiration on the tumor site. What is that, you ask? A fine needle aspiration is a procedure during which the doctor first brings out a comically large, hollowed out needle -- literally, the length of a forearm. Then, he pumps the needle in and out multiple times to obtain some of the tumor tissue within the hollow needle for analysis. Terry had to do this not once, not twice, but three times to my thyroid tumor. OUCH. A few days later, though, we had the results. Terry called to tell us that the results were inconclusive, but given its size we should probably surgically remove it. It could be a benign tumor, but if it's cancer we would need to remove it and the left half of my thyroid, along with the right.

You may be thinking what I thought -- after all that chemotherapy, how could any tumor have survived? But apparently thyroid cancer is a special type that could have not only survived, but continued to grow. And although I won't know if it's cancer until after the surgery, it was still quite a blow that: 1) I would have to undergo a surgery that requires a two-day hospital stay; and 2) WTF?! Why am I fighting another thing that is potentially cancer? Was one terrible ordeal not enough?

AUGH! WTF?!?!?!

At first, I was really devastated by the news. I can't help but feel like my body is fighting this constant tide of cancer, and even though I might win individual battles it will lose the war in the end. My spirit might be strong, but the flesh is weak, and in the end it will only be able to take so much.

I know this is not a big deal. Thyroid cancer is easy to treat. Surgical removal of the thyroid and radiation. Easy. Joe himself has performed this exact surgery many times before. But for me, it isn't so much that the cancer is easy to take care of. Well, to be honest, we don't know if it is cancer or not, but it might as well be as far as treatment is concerned. For the first time, I feel really mortal. I felt weak and sick before, but there was no question that I was going to pull through. And there is no question now either, but the difference is that I feel weaker. I am weaker. My body is tired. How much more will I have to take? How much more can I take? I hope against hope that it isn't cancer. But if it is, and they take out both sides, how will my body react to the complete loss of my thyroid? The thyroid is so important to regulation of our body's normal functioning, including our metabolism. Will I get fat? Will I become a wraith? (This is preferred.) Will I ever feel normal again?

In a moment of sadness and weakness, I asked Sharon if she would look after Joe and Evan, should anything happen to me. I know that if Joe dated anyone else after my death, she would be the one to grill that girl to death. I asked her to make sure his new wife would be good to my Evan. Joe doesn't like hearing about this. Every time I bring it up, it always ends up with the same conversation.

"Honey, if anything happens to me, I know you will be okay because you will probably marry again. But make sure that she is good to Evan. There is nothing and no one sadder than a child without a mother."

"I am NOT getting remarried!"

"Oh my goodness, seriously. You would be a young, single doctor living in Orange County. I don't think you'd have a choice! Women will break down our door to get to you!"

"I wouldn't remarry. There is no one like you."

Stubborn as a Missouri mule. But -- because I love him so much -- I hope he at least considers it when the time is right. I want him to have someone to lean on and love him the rest of his life. So, I tried a different approach.

"Well, if something happened to you, wouldn't you want me to remarry?"

"Hell, NO."

Well, there you go. My Joe. :)

Wish me luck tomorrow. And let's hope it is, finally, the beginning of the end. May God bless you and your families as this evening wears on and morning brings new challenges and, with my family -- my sister of course -- friends, and my Joe beside me, new hope.


Saturday, April 6, 2013

The last infusion

Hooray! My last chemo is finally over!

When I arrived on my first day of my last round, I found my chemo unit decorated by Sharon. It really brought tears to my eyes, because it really felt like I had won this war- i just had to get through this last battle, with my team.
My sweet Sharon
Wednesday night was the hardest night of my life. The pain, the nausea, the neuropathy -- all were worse than before. I just wanted to die. I took some medicine, and just passed out. It was the most merciful thing I could have done for myself. I wanted so badly to go out to eat, to celebrate, but I simply could not.

Thursday and Friday's infusions were nerve-wracking. I seriously thought that my veins would not hold up. But I think my sister was more stressed out than I was. Just before Friday's infusion I told my sister that I was planning on using the same arm I had used on Thursday, which we never do. It's always one arm on Wednesday, the other on the Thursday, and then back to the first on Friday. It gives my veins an opportunity to recover, which is no small matter. Catherine had done a lot of research into vein pain,  and vein collapse, after the trauma of my previous round of infusions. But my veins were already seriously damaged from months of infusions, and Wednesday's was the worst. So I was doubling down on the same arm for Thursday and Friday. It was a gamble, but one that Joe and I had decided was worth taking.

During the infusion, Catherine spent a lot of time engaging Sharon and myself in a conversation about a situation she was trying to understand. Her voice and reasoning were measured, but I could tell how tense she was throughout the discussion. I really have not seen Catherine that stressed out in a long time. I initially thought she was stressed out about the situation, but as we were going home she let out a long breath and confessed her relief that my veins had made it through to the end. That's when I realized she'd simply been trying to distract me from the infusion and the vein pain. The situation she was describing, while disconcerting, was only a cover for her concern for me.

I honestly don't know how she does it. She is so supportive, coming here every weekend all the way from Washington D.C. No other sister is this dedicated and loving. And my veins, as much as they hurt, made it through this last infusion. My body has stuck by me, and for that I am so grateful. As we expected, the bone pain and nausea is the worst it has ever been, but I am so happy that this will be the last of it that I don't even care.

This has been a rough winter, but I still feel so lucky. There are so many more winters ahead for me, and spring is finally here. This was the winter of our little community's discontent, made bearabale by the warmth of their care. Ranging from the constant comfort of friends like Sharon and the generous souls of our MOM's club, to the steady support and care of my family, and of course, the calm love and support of my husband Joe and the effervescent joy of my little boy, Evan, they turned a situation of pain and horror into an expression of love. I feel so light, so positive. I have so many people who love me, and care about me. I cannot help but feel happy.

Every Easter, I usually make my special all-day ham, cheesy scalloped potatoes, baby carrots, and rolls. But because I was having such a hard time with this last chemo, my Dad bought a ham, ribs, turkey, and a million sides from Honeybaked Ham, and we had a feast. We had Easter brunch at Evan's favorite place, The Coliseum at Pelican Hill, and he wore his suit and bow tie. He was so cute, I could hardly stand it!

Hmm... The IPO set the stock at $15 a share but I'm pretty sure their primary competitor is going to go under by the end of the third quarter. Their fundamentals are good, but they have a major cash flow problem. Maybe I should increase my bid. Damn, I got 99 problems, but my breakfast ain't one.
How could I feel sick or in pain when I have a boy like this? So Easter was low key for us, but it was a happy one. But by Sunday afternoon, the pain hit me like an avalanche. The bone pain was so intense, I couldn't even move. I just lay there, feeling crushed, my bones leadened with pain. I was so thirsty, but couldn't drink until my sister watched me for a moment and then appeared with a glass of water and a bent straw to help me drink. She could tell I was in more pain than I was willing to admit. Which meant, of course, that we danced the little "Dance of the Medications" that Catherine does to make it rain pain meds.

Catherine sits down on the couch beside me.

"It looks like you're in a lot pain."

I make a non-committal noise. I am in pain, but don't want to admit it. That being said, I'm hurting too much to have the strength to deny it.

"Do you want to take some Norco?"

"No, it's okay. I don't want to get drowsy."

"You don't have to be in pain, though. Maybe just a half a pill?"

"No," I repeat. "I don't want to get drowsy."

Catherine stays quiet for a moment, before responding.

"How about just a quarter of a pill? The half dose worked really well at the hospital, and we have the pill cutter they gave us. It'll be really easy."

Silence.

"I can just go ahead and cut it and have it ready for you. You don't have to take it now."

I shift slightly. "Maybe later."

"Okay." She gets up to cut the pill. "I'll set my timer for five minutes, and we can see how you feel then."

I nod, and Catherine sits down with the timer on her phone. Five minutes pass.

She cuts off the timer before it can shrill out its alarm. "How do you feel?"

Catherine waits, quietly, as I struggle between my pain and my dislike of the medicine. Finally, I look towards her.

"Am I stressing you out by not taking the medicine?"

"Yes. I just don't think you have to be in pain when we have ways of relieving it. It doesn't help anyone."

"Okay."

Catherine hands me the pill, which she's had ready by her side, places the end of my water glass' straw against my lips, and down it goes.

A few minutes later, Joe comes in and weighs in on the Medication Dance. "A quarter pill? Liz, even one of those whole pills is just a half dose, which is practically nothing." I don't respond. "Take the other quarter pill, at least. Come on, Liz. It's not a good idea to just sit there in pain." Catherine weighs in with her agreement, and they both offer the timed waiting option once more.

Ten minutes later, too tired to argue, I take the second quarter of the pill -- and, of course, I'm drowsy. But, the pain is a bit less, and I'm able to actually sit up and engage my dad in conversation when he comes by. In spite of it all, I'm actually glad I took the medicine.

I honestly don't want to be difficult. But a part of me doesn't want to mask everything with medication. I take so many pills, so many times a day. Pain is a part of this process, and I have to accept it. It gets tiresome always medicating myself. Life is short, and Evan changes and grows every day. It's hard enough to give up this time with him and my loved ones. Giving up even more to the medication is hard to take.

Another day down, and another day of pain that I will hopefully never have to go through again. In the long run, it's all worth it. And it's the last infusion! Hooray!!!!!!

Happy Easter, everyone!


Tuesday, March 26, 2013

The last cycle

It's Tuesday night, and tomorrow marks the first day of my last chemo infusion. The worst day. As the time of the infusion draws near I can feel my emotions coursing through me, leaving behind streaks of pain like the blood pumping through my charred veins. The last round was pretty rough, even for me. The toxins have left their mark. My veins still hurt, even now, and I wonder if they'll manage to make it through these last three infusions. Just one last round. That's all I need.

Why just one? Well, it turns out that -- after suffering through a PET and CT scan -- my cancer is now officially in remission. A part of me feels happy for the news (it's certainly better than the alternative), but I find it difficult to truly celebrate until I'm well and truly done with chemo. At least this round of it. Now, it's just a matter of keeping it away!

My friend Sharon asked me what I wanted to do with all my "cancer stuff." I have three wigs, countless scarves, and a ton of literature. My mom and Sharon bought me all my scarves when I shaved my head, knowing that I needed a way to look and feel relatively normal, even without any hair. Now, when I look at those scarves, I don't think cancer. I think of Sharon and my mother, and how much they love me and how they've been there for me throughout this whole ordeal. How Sharon cut her own hair off in solidarity with me, and it turned out to look so beautiful. When I look at the plethora of pamphlets and books, I think of my cousin Christine, and how she went to the Lymphoma Conference, taking copious notes -- even recruiting her friends to take notes and ask questions -- while gathering all the information she could from all the speakers. When I look at my humidifiers, and my heating pad, I think of my sister and Joe, taking care of me every day and every weekend. I don't think cancer. I feel love. So I am going to keep all of my scarves, bought for me lovingly by Sharon and my mom; I am going to keep my heating pad and humidifiers, bought for me by Catherine and Joe; and I am going to keep all the literature, lovingly gathered for me by my cousin Christine.

Time is ticking away, and pretty soon I'll be hooked into the IV at the infusion center, wondering if my veins will last. It feels nearly over, though, even if it's not. So the other night I turned to Joe, and I commented, "It will be so nice to finish this last treatment, huh?"

He replied, "Oh yeah, for sure."

"I hope I get through it okay." Who knows what the next few days will bring?

"You will, honey."

We sat quietly for a while, each of us reflecting on the cancer and what it took from us. I looked at him with a crooked smile. "It wasn't so bad, was it?" I asked, smiling.

He looked at me square in the face and replied, "Are you f*-ing kidding me? It has been totally awful! Take your pick -- the 12 straight days of nausea, the bone pain, the vein pain, or the neuropathy. It's been hell!" We looked at each other and laughed.

The smile faded away from my face as I asked, "It's been hard for you, hasn't it? Watching a loved one in pain, and feeling powerless to stop it. I don't know if I could have been strong if you were the one in pain. It would have killed me inside. Thank you."

He grew quiet before replying, "Well, it's not nearly as hard for me as it is for you. You were the one going through all of that."

Joe has never talked about how he felt about all of this. I have encouraged him to talk about it, but he doesn't find it easy to share. It's odd for him, as he really likes tackling problems and issues through dialogue. I've asked Joe, along with my sister, to share some of their thoughts here on this blog. I hope they do. I have a feeling they have a lot to say.

Now for Round 6 tomorrow!

Wednesday, February 27, 2013

Drop it like its hot, baby

There was the bell. It was recess time, and all of the children in the class ran out, eager to play. All except for two little girls; Beth Aziz and Elizabeth Ahn. Beth was a rather chubby, oddly hairy little girl, while Elizabeth was a rather awkward, shy Korean girl who didn't say much outside the classroom.

The two girls looked at each other, unwilling to play together by default. Elizabeth took her book and stood in line to play tetherball, a game where it didn't matter if you had a friend because the next girl always played the winner of the game before. But she always took a book with her, in case the tetherball game didn't last long. She could usually be found sitting on a bench, reading a book. Beth went into the soccer field, wandering and exploring on her own.

When her mother picked her up, she asked her usual question, "How was your day at school, Elizabeth?"

The answer was always the same, "Today was a terrible day. Nobody wanted to play with me and I was so lonely at recess."

"Did you test your vocabulary test back?"

"Yes, I got 100%."

"Of course," her mother said, and paused. Elizabeth couldn't tell, but her heart hurt for her little girl. "Next time you should ask someone to play with you at recess."

"Ok," Elizabeth responded, knowing that she never would, and that they would have the same conversation tomorrow after school.

*     *     *     *     *     *

I don't think that those kids were mean; rather, I think that I was too shy and awkward to try and make any friends. And I was too proud to ask anyone if I could join in and play. I figured that if they didn't want to play with me, I didn't want to play with them. Quite frankly, who could blame them for not wanting to play with me? I was a rather homely, shy, and I was the school nerd who always did her homework who always had the right answer, and never spoke out of turn in class.

Today was the first day of our Mommy and Me preschool. Evan approached the class with a little trepidation, as he is generally a cautious child, and a bit shy by nature. I was a bit nervous as well, as perfectly coiffed women entered the room, one after another, with their equally perfect children. Little Evan and his bald mother were definitely the anomalies, and I felt awkward as I watched the other women greet each other with kisses on the cheek and peals of laughter. I sat there, playing with Evan, hating that I felt like I was 8 years old and back in elementary school. The classroom door opened once more, and a rather obese, dark-haired woman walked in with her son. She picked a spot next to me, the only spot still open. Great. I have now reunited with Beth Aziz.

One of these is not like the others...
Today was the first day that I felt so conspicuous. I could tell that a few were probably whispering amongst themselves. Definitely, she is sick. Maybe she is even contagious?

Everywhere I have gone up until now, people have known me as Liz, the attorney, the mom, and the confident, assertive woman. Here, for the first time, I had no previous identity to shield me from the stigma of cancer. I was the cancer patient, the skinny bald girl with a kid. This may come as a shock to many of you who know me now, but I was shy all the way from elementary school, and through high school and college. I didn't have a lot of friends, and it was only after law school and becoming an attorney that I found my voice. And that voice became stronger and even more my own after I met Joe. He loved that I had such a unique voice and personality, and how persuasive it was. He encouraged it, and his love and confidence gave me the foundation to be the woman I am today.

It's funny how fears that stem from our earliest memories, from our smallest selves can re-emerge no matter how much you've achieved, and how much you've overcome. But as adults, we're better equipped to choose whether we want to go back to those places, or re-affirm our present identities as women or men. I am proud of my voice, and the only person in that room who could truly suppress it was me.

So I got up, shook off my insecurities, and started talking to several of the women as the kids were playing. Some were less than responsive, but others seemed interested, and engaged me with warmth and friendliness. And cautious little Evan opened up as he realized that the strange new place was a safe one for him and mommy. He played and laughed and clearly loved being part of the class.

I guess in some ways, I'll never outgrow that little eight year old girl who didn't know how to fit in. And Joe, ever supportive, has told me that I don't need to put myself back in that situation if I don't have to. But I can't wear my cancer on me like the mark of Cain. Living with cancer isn't necessarily something to be proud of, but the strength that it takes to do so is definitely something to be proud of.

Cancer has already taken enough away from me. It's taken enough from our little boy. I refuse to let it take anything more from our family. My hair will grow back, and the faith and love Joe gives me everyday gives me the strength and confidence to overcome every situation. I never retreat- I attack! And I bet I will make some really good friends in the long run. So...here goes, I gonna drop it like its hot, baby. Mommy and Me -- here we come!

Thursday, February 14, 2013

A Valentine Vignette

I was feeling quite bad this morning from the red syringe of death, which was administered yesterday. But my sister is coming this weekend, as she does nearly every weekend, so I decided to venture out to the store for some groceries. My mom had Evan, so it seemed like the best time to get some errands done.

As usual, I pushed a cart into Bristol Farms and started my rounds through the store. Partway through I see a familiar face -- one of the store's managers, who I frequently run into on my grocery runs. I pause and flash him a smile.

"Good morning!" I chirp. He paused before replying. I'd been moving around pretty slowly before seeing him as a result of my nausea, and I could tell he had noticed.

"Good morning," he responded, his tone slightly more serious than mine. "How are you feeling?"

"Okay," I said. "It was a rough chemo day yesterday, but I'm slowly bouncing back today. I decided to venture out to the store instead of laying at home feeling sick and sorry for myself." I smiled to take the sting off the words.

He nodded in agreement. "You know, I always see you coming in, and you were always so beautiful, and had the best smile for everyone. And then one day I saw you walk in, and you had no more hair." He hung his head down, slightly. "I shed a few tears for you that day," he said.

I opened my mouth to reassure him, but he raised his hand to forestall my words. "But I see you here even now, with that same smile, and that shows me what a beautiful person you really are. You are in my prayers," he said.

I felt touched by his heartfelt words and empathy. "Thank you so much. I think having a positive attitude about it is the first step. It's hard to stay positive sometimes when it hurts so much, but you can always keep that hope inside you to keep you going. That, and all my friends and family who love me and support me, always. Thank you so much for your kind words -- you will always see me here, smiling!" I smiled again to prove my words.

A little while later, at the checkout, and I saw a bouquet of red roses among the bagged groceries in my cart. "Oh, I didn't purchase those flowers," I said to the cashier. "That must be a mistake."

"Oh, no. Eric wanted to give those to you for Valentines day," the cashier said to me.

It was such an unexpected gesture, I hardly knew what to say. I was so moved by his thoughtfulness and support. I guess God is always watching over me, even when I feel so alone and helpless. Even when I'm in so much pain I want to cry. Thank you Eric, for making my day a whole lot brighter.

Happy Valentines Day!

There is NO throwing up in the infusion center

Yesterday was the terrible red syringe of death day for chemo. As if the color and vein pain it induces wasn't enough, the memory of the intense pain that filled my body afterwards filled me with dread. We went to In 'N Out for burgers the night before and I had to force down every single bite. It felt like a last meal.

"Should we get two more hamburgers and eat until we are sick?" I asked Joe.

"Uh, if you want to," he replied, looking at me strangely. He knows that red meat hasn't appealed to me for months, and now here I was, asking if we should get more.

"Well, I don't think I could anyway. I'm just so upset. It's my last meal before all the ugliness begins tomorrow," I said in a small voice, looking down. I gazed distantly at the white plastic of our table, and watched Evan out of the corner of my eye. He was having a fine time eating french fries and totally ignoring his burger, except to periodically poke a hole into the top of the bun.

Time waits for no woman, though, and sure enough, the day arrives and we're getting ready to go. Joe and Sharon have been my consistent companions for the first day of chemo, and they knew I was nervous. To be honest, I was scared. But the world is always easier to take with your loved ones around you. We sat in the infusion center's waiting room, passively waiting to be called, when I was approached by an odd looking woman with extremely blond hair and very plumped-up lips.

"Excuse me," she said loudly. "But I have to tell you that you are a very pretty girl. Do you have cancer?"

My hand went up to the lovely Diane Von Furstenburg scarf that Sharon bought for me, which was currently wrapped around my bald head. Um, is she an idiot? Obviously, right? Hint #1: I am bald. Hint #2: I have a head scarf on. Hint #3: We are in a chemotherapy infusion center.  Duh. "Yes," I replied, in a fake-friendly voice. "I do."

"Oh. Well, you are very beautiful," she said. I opened my mouth to tell her she was beautiful too, as she obviously invested a great deal of time and money into her plastic appearance, but the words just wouldn't come out of my mouth. An awkward pause lay between us. I guess she was expecting me to pay her the same compliment, too, but there are limits to what a person can force herself to do in one day. I thought she might say that she had cancer, as well, but she instead jerked her thumb over to the gentleman next to her and said, "So does he." She continued to flap oddly in his direction until he looked up, surprised.

"Oh!" I said, trying to disguise my own surprise. Imagine volunteering someone else's cancer! What is going on?! Can this get any weirder?

"What kind do you have?" the blueberry-lipped collagen lady asked in a long tones.

"I have lymphoma," I said.

"So does he!" she said loudly. I look around nervously.

"What kind do you have?" he asked in a moderate, even tone. "I have Hodgkins."

"Oh, I have T-cell Lyphoma."

"Oh," he responded.

Thankfully, at that moment the nurse called my name and I was saved from further conversation with the lip-plumper lady and her cancer-mate. I left, saying goodbye.

Hello, dahling. You are a very pretty girl...

And so my day continued. I actually retched this time just after they administered the red syringe. They brought me a throw-up bucket, and ran in with a shot of something that made me very sleepy. It was Ativan, which is known to enhance the effects of my anti-nausea drug, Zofran. But Mama it knocked me out! Made me dizzy too. I couldn't believe how fast those nurses moved! But I guess there is no throwing up in the infusion center. Come to think of it, I have never seen anyone throw up there before.

Finally, it was done, and I was able to go home, where I slept for several more hours. I woke up to find that my friend Heather, who brings me meals even when it isn't her turn on the MOMS Club dinner list, had actually made us a bolognese sauce, complete with an enormous fruit basket, bread, and salad. Wow. I feel so lucky to have friends like her, but I'm not sure I was able to properly express my gratitude. Unfortunately, my body completed what I tried to do at the infusion center, and without those sprinting nurses, I finally threw up. Fortunately, I can tell her thank you now -- thank you so much, Heather. I can't tell you how much I appreciate all that you, my friends, my family, and everyone else at the MOMS Club do for me.

It's strange. Cancer makes you feel so bad, but it can also bring you some unexpected moments of happiness drawn from the love and care people show to you. It's like it cuts through all the formality and allows people to really open up and be mindful, and thoughtful, about telling you how much you are loved. First, there's Joe. He takes such good care of me -- I know that Evan and I are always on his mind and he's always trying to think of ways to make our lives better. But I also have my wonderful friends and family who are always praying for me, and thinking about me. Not a day goes by when I don't get an email or a text from my cousin Angela, my cousins Christine and Albert, or my sister Catherine. And Sharon is at almost every infusion. I am one sick, but lucky gal.

Speaking of which, I think I may need to call it a night.  The neuropathy in my hands and the roiling in  my stomach is keeping me from typing properly, so I guess I will have to just post this and one more item before signing off. I am buckling myself in, because this is indeed already a very bumpy ride!

Monday, February 11, 2013

Death hates bacon cheeseburgers and fries

It has been a tough cycle. After not being able to eat for over a week, I was reduced to a mere 97 pounds. I slowly started to introduce food back into my stomach, taking care so I wouldn't make myself sick. Okay, so -- full disclosure -- my first meal was a bacon cheeseburger with chili cheese fries, and after a few bites I was terribly, terribly sick, but I definitely learned to be cautious after that! Suffice to say that meal was a net calorie loss. Luckily, I have gained some of the weight back since then, and am currently at a more reasonable 102 pounds. I'm okay with that. Even if I wasn't, I can't seem to gain more, so I might as well be happy with my current weight. Food just doesn't taste the same, and even when I eat my favorite foods, I can't seem to eat very much of it. But, I have chased Death away again. Hooray! I am titanium! (Cue David Guetta and Sia music)

Death hates bacon cheeseburgers and fries

This has been a fabulous week.

I still tire easily, but I am able to eat (enough) food, and most importantly, take care of my Joe and Evan. Joe's parents were in town for this weekend, and it was just what I needed to gather my strength for my fourth round of chemo. Unfortunately, because of chemo, we have not been able to see them for several long months, so it was a very welcome and exciting visit.

Evan was so very excited to see his Sittee and his Grandpapa. He received a lot of brand new toys to play with, and got to spend time with two grandparents who dote on and spoil him endlessly. Who wouldn't love that?

I think that it was also good for Joe. He is such a strong source of support for me, but I worry that he isn't getting the help or emotional support he needs to support him through this, as well. I know that it is hard to see the person you love in so much pain. But I could tell he was able to relax a little with his mom and dad here, even quoting a little Robert Frost with his mother during dinner (I prefer Edgar Allan Poe myself- I am so much darker than he is- hehe). I told mom and dad to come out again, anytime. Whether I am feeling good or feeling badly, they will provide comfort and support for Joe. And for that, I am always grateful. I guess that's one of the few constants we have in life -- death, taxes, and love. Mom, Dad, I loved every moment of your time with us. Please come back again soon.

So much love!

Monday, January 28, 2013

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."




Saturday, January 26, 2013

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

Wednesday, January 16, 2013

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