Great Wolf Lodge

Yesterday we came back from a quickie vacation at Great Wolf Lodge in Grand Mound, WA. It is a hotel/resort with an indoor water park complete with several activity pools and slides. My brother Zhivago, his wife Toni, their son Connor invited me and the boys to come with them as a last hurrah before school starts for the kids. On the way there, we picked up my little sister Diane to come along with us. I had some anxiety about taking the twins on such a large group vacation, mostly because I know they are high maintenance at 2 1/2 years old, so I didn't want to spoil everyone's time going on the rides if we had to constantly chase the twins down in a big crowd. But you know what? We had a great time despite all the difficulties and logistics of getting there!

The seven of us and our stuff crammed into my mini-van (I knew my un-sexy ride would come in handy for situations just like this). During the 2+ hour drive there, the kids watched a DVD in the van and generally touched, tickled, and kicked the back of everyone's seats. Toni and I had packed enough snacks to feed a small third world country we when found out there would be a fridge and microwave in our hotel room. This resort completely caters to children and a family vacation environment. We checked into a huge family suite complete with a separate king bed suite with its own bathroom, two queen beds, a full-sized pull-out bed, fireplace and 20 ft. ceilings! We had so much room to relax and play, and the kids had a devastatingly fun pillow fight jumping back and forth between the two beds. There was an arcade, a "tween" dance club, story time with animated forest creatures in the grand lobby, six restaurants, and a Cub Club activity center.

For most of the day, we played in the huge indoor water park. It had a wave pool, a water "fort" that dumped a giant bucket of water on revelers every 20 minutes, two medium-sized water slides and two even larger, monster water slides that twisted out-of-doors and back inside again. It also had a very large kiddie pool that went from 0' to 1' deep for the little ones, complete with their own water cabin, fake jet skis for them to sit on and squirt each other with water guns, a mini water slide, a banana boat, and all manner of fountains, spouts, buckets, water jets, everything you can imagine for kids to work themselves up into an ecstatic frenzy of pure water enjoyment. There were lots of lifeguards and flotation vests to keep the little ones safe and secure.

Rowan and Spencer played and frolicked in the water until their fingertips turned pruny and their little lips went purple. Connor and Diane rode the floats in the giant wave pool, and somehow Diane (who is 7 years old) was convinced to ride the biggest water slide of them all. Zhivago said she had a look of sheer terror on her face as they slid really fast around in the slide and then dropped precipitously into a large bowl and jetted out the end of the slide. She kept wanting to wipe the water out of her eyes as they zipped down on their inflatable, but he yelled at her to HOLD ON at all costs! Connor braved all the big water slides again and again- not bad for an 11 year old.

I had fun watching the kids have fun. Not feeling as well as I could to fully enjoy all the rides, I was content to just make sure they were having a good time. So I put on my appropriately matronly swimsuit that hid most of my stretch marks and surgery scars, and just waded after them and kept them out of trouble. We had such a good time, and I know I could hardly imagine trying to take Rowan and Spencer to places like that by myself. I want my boys to experience a lot of good things in life and not be hindered by logistics or cost just because they are twins. Zhivago and Toni are amazing with them, and so are Connor and Diane, I couldn't ask for better company on a vacation. As August comes to a close, we can already feel the slow creep of autumn upon us as kids head back to school. Which also means my surgery date is looming. I want to enjoy every last minute of what's left of summer while I can.

Momentous Vomit Episode

I was just thinking about my friend LouAnn and how she has made me laugh in spite of everything going on. Back in June, she met me at Evergreen Hospital for my daily radiation treatment. We caught up over lunch afterward since I hadn't seen her for almost a year. After a describing the side-effects of treatment to her, she responded in her typically irreverent, but lovable sense of humor, "Oh, you mean you have torch-butt." Yeah, something like that, and we laughed and laughed over it even as my insides ached.

Last Monday night, I had dinner with LouAnn and my friend David at Divine on Roosevelt. We had planned this dinner for some time, but on the appointed day I suddenly felt nauseated and extremely tired, and didn't know whether I should cancel on them. Not wanting to disappoint them or myself, I drove to Seattle anyway and made my apologies for not feeling well. After feeble efforts to be lively and stay in the conversation, I got up abruptly from the table and excused myself to go to the bathroom. Once there, I promptly threw up. Evidently, it was something bad I ate earlier in the day but I hadn't made the connection until that moment. Once it was all over, I really did feel so much better and was able to re-join my friends at the dinner table. David and LouAnn were a little distressed on my account, but I was determined to salvage our dinner date. I didn't eat much after that, but at least I felt well enough at that point to enjoy their company and not make waste of such a fine evening.

When I called LouAnn later in the week to thank her for dinner and to apologize again for my momentous vomit episode, she again irreverently replied, "We'll have to get you a T-shirt that says, 'Throw up before you show up!'" More uncontrollable laughter at her craziness. That's classic LouAnn, and I wouldn't change her for the world. She reminds me that we have to find laughter even in the darkest and most dreadful aspects of life so that we can illuminate the moments that are good instead.

Healthy On The Outside

I guess I'm relatively fortunate to not have deteriorated to the point where it's readily apparent that I'm fighting cancer. Friends who've seen me recently tell me that I look and sound well, not sick at all. To me, that's the best kind of feedback because no one wants to look as ill as they feel at times. Some express surprise that I haven't lost any hair. Because radiation treatment was focused on my lower body, there was never any real danger of me losing any of my hair, and the chemo wasn't enough to really make it all fall out. I actually lost more hair after my pregnancy when my hormones were all out of whack.

I only lost a total of 8 lbs at the conclusion of treatment, when most patients tend to lose about 20 lbs. I'm at about 120 lbs now. So far, I've kept the weight off even as my appetite has returned with a vengeance- in fact, I'm thinking about a ham sandwich even as I type this- but I am eating much healthier now. I've cut out red meat almost entirely, and eat mostly chicken and fish, brown rice, eight-grain bread, and lots of greens and fruit, some of it organic. My stepmom cooks a lot of simple, healthy and tasty Vietnamese dishes for me and I'm on my way to building up my strength again before surgery in a month. With any luck, the cancer cells have all been obliterated, so I have to pack in the protein since my healthy tissues need a chance to regenerate after the onslaught of chemoradiation. But I do sneak in a lot of chocolate, which is strange because I crave it more now than I used to. Dark chocolate does happen to have antioxidant qualities. My family tells me my face looks slightly slimmer than before, but my baby belly is still hanging out there as a badge of maternal honor. I got back my pre-pregnancy weight, but I will never again regain my pre-pregnancy shape, sigh. That belly bulge will never go away unless I give in and go for a tummy tuck; but I hardly need another surgery since I will have had a total of three by year's end.

Some of the photos I've posted on this blog page were actually taken in the past month. My friend Toshi and his wife Cherry Mae said they're surprised and pleased that I look more well than they thought I would considering everything I've gone through. Other than moving more slowly, being more fatigued, and experiencing those annoying hot flashes, most of my cancer routine is privately fought. I take my pills several times daily as I have for the past few months, and it's getting to the point where I really detest swallowing pills. But I can feel the residual pain and inflammation inside when I don't take them on time. I can't wait until I'll be done with them for good, but surgery is coming up soon so I think I may be carrying those little plastic bottles with the white caps for some time yet.

When I feel good and have some energy, I save it to play with Rowan and Spencer or I take short, easy walks just to breathe in some fresh air and get some vitamin sunshine. When I do go out, I put on some foundation and plenty of blush so that I can glow a little and hide any pallor or the dark circles under my eyes. For now, I will happily masquerade around as a healthy person on the outside. That way, I am not scaring anyone with what could otherwise be an outward reflection of my inward battle.

Sleeping Babies, Sleepless Mommy

It's 4am and I can't seem to get back to sleep. The onslaught of heat saps what little energy I can muster everyday. Although, I'm not exactly complaining after the horrid winter we had. It's just that the super-heated days combined with my frequent menopausal hot flashes compound my fatigue. I can't seem to get enough sleep or water to counter the effects. Being awake at this quiet hour, I did check on my babies to make sure that they are sleeping comfortably in this heat. They look beyond cute in nothing but their overnight Pull-Ups. Spencer woke up with a messy nose-bleed earlier but I cleaned him up, gave him a cool cloth wipe-down and he drifted right back to sleep with minimal whimpering. Rowan had his hand tucked under his cheek like a sweet little baby, but just shifted so that he is sleeping butt up in the air and limbs curled under like a diapered turtle.

They are growing so fast and losing their baby fat that I love so much, so I pinch their little butt cheeks while I still can. Looking at their elongated baby bodies, I'm still astounded at how I managed to brew up such big, beautiful babies in my belly. They used to fit in there together! Now they are their own little people, with completely opposite but big personalities, capable of so much love and mischief. My sons don't know or understand how sick I am, but they hug me so tightly, and laugh and play so innocently, that no medicine could possibly make me feel as good. I can't begin to imagine how much worse this illness would be if I had never had my children as a daily source of joy and comfort to me. It's a bittersweet realization to know that I have them in my life, yet I might not a life with them if I don't beat this thing. I HAVE to be around to help them grow up-- this thought consumes many of my waking hours. I want to teach them about the absolute value of family and friendships, having compassion and empathy for others, the importance of education, and living life with purpose and merit. I want them to always know how special they are, even when they are just sleeping.

The Least Discussed Cancer

Nothing about colon cancer is remotely appealing, and it seems to be the least discussed type of cancer simply because it involves the organs of waste elimination- and nobody wants to talk about that! However, in an effort to edify and raise awareness of this disease, I feel it's best to just tell it like it is. The truth is I'm sick right now and so I'm beyond feeling "embarrassed" about any of this, because this is my life we're talking about. I've said that I've lost some sense of modesty in medical situations after having two kids, so I've just about abandoned any qualms about discussing my body and my bowel movements at this point, although I try not to force the information on anyone. But when anyone expresses curiosity or concern, I welcome and even encourage questions because it gives me an outlet as well. I can be quite candid and frank in my discussions about it because there's no way around it anyway. A friend once told me that once you have kids, 90% of your conversations are going to be about poop. Well, that seems to be the case with colon cancer as well, go figure. The following post may be a bit grisly at times but it is what it is, so continue reading at your own risk.

Everyone wants to know what happens now that my chemoradiation treatment has concluded. At the time of diagnosis back in May, the colorectal surgeon discovered a 4cm tumor in my lower colon, which was confirmed by the subsequent CAT scan. The scan also revealed that there did not appear to be any visible metastasis to my other organs at this time, so that was a bit of good news. It made radiation treatment much easier to devise since most of the radiation beams would be extremely localized and focused on the single tumor. However, the location of the tumor is a bit problematic since surgical removal of it and the surrounding tissue could result in having to remove part of the rectum as well. That would necessitate my having to wear a colostomy bag for the rest of my life. For those of you who don't know, a colostomy is a surgical procedure that involves connecting a part of the large intestine onto the anterior abdominal wall, resulting in a stoma or opening on the abdomen to which a bag would be attached to collect any waste. Due to my relatively young age, the medical team wanted to try a treatment regimen that would increase my chances at a better quality of life by first attempting to shrink the tumor via chemoradiation before surgically removing what's left of it.

After 6 full weeks of radiation treatment and daily 5FU chemotherapy, we can only hope that the tumor has shrunk to a point where it would allow the surgeon to remove the tumor growth area without sacrificing any part of the rectum. At the time of the surgery, the doctor will be able to see if, and by how much, the tumor has shrunk after chemoradiation. He intends to cut out the cancerous section of my colon and about 2cm on each side of the tumor location, as well as taking out any proximate lymph nodes and the watershed area that feeds it. If successful, the surgery will prevent the cancer from spreading to other organs and save the rectum, therefore evading a permanent colostomy. The doctor will also be able to more accurately "stage" my cancer, which means that a descriptor (usually a number between 1 and 4) is assigned to indicate how much the cancer has spread. It takes into account the size of the tumor, the depth of penetration into the tissue, the involvement of lymph nodes, the spread to adjacent or distant organs (called metastasis). Accurate staging is the best predictor of survival after treatment, or it may even determine the plan for further treatment. If there is any chance of recurrence or if it is evident that the cancer has spread, then an executive decision will be made to remove the rectum as well and I will have to live with a colostomy for the rest of my life. But it will be a small price to pay in exchange for years of life with my children.

I am not going to lie, I really suffered through chemoradiation and I would never wish such an affliction on my worst enemy. The pain and discomfort were excruciating at times. I was literally burned inside out, and the pain of making a bowel movement through raw, burned and damaged tissue was enough to leave me breathless, shaking and bleeding each time. I was psychologically afraid to eat because I feared the inevitable bowel movement that would follow, so I went hungry for days and it made me even weaker. That is why I had to be admitted to the hospital after 6 full weeks of getting burned by powerful rays that are meant to kill the cancer cells and enduring the 5FU chemo that coursed through my veins daily like a poison. Both of these treatments caused collateral damage to healthy cells and tissue as well, which means that my ovaries and my uterus were fried in the process. The doctor told me that such damage could not be avoided, and the result is that I will never again be able to have children and that I will subsequently experience all the symptoms typical of menopause at age 35. The news was not particularly devastating to me because I already have my twins. The fact that I had children very recently, and that I was lucky enough to have had two at once, was a blessing and comfort to me in the face of such terrible news.

But now that the treatment is done, my body needs the time to rest and rejuvenate before surgery. The doctor explained that he usually requires 8 weeks of recovery from chemoradiation before surgery since operating before the body has had a chance to heal tends to result in extra bleeding and leakage at the surgical site. So my surgery is scheduled for September 22nd. Post-surgery, I can expect about 5 - 10 days in the hospital to heal and wait for my colon to "wake up" again. Not only is he cutting out the cancer, he is simultaneously installing an ileostomy, which is a stoma for the small intestine instead. Having the ileostomy for 3 months will allow the surgical site to heal by bypassing the colon altogether. Although I am a little bit frightened by the prospect of major abdominal surgery, I remind myself that I made it through an emergency C-section for my twins, and I should be able to weather this as well. The incision will be perpendicular to my C-section scar and will run from my bellybutton up toward my chest. After 3 months of healing, the doctor will reverse the ileostomy and try to put me back together again. If everything goes well, I will not have to live with a permanent colostomy or get adjuvant chemotherapy and my body can hopefully work the way it used to. With any luck, the cancer will either be eliminated or go into remission.

This is my life right now, and I am just trying to buy some more time so that I can have years ahead with my kids. We are all living on borrowed time anyway, but I'd like to take an advance, and we know the kind of fees that are charged for that. Live well, my friends, and take good care of your health. You will not even begin to know how much you will miss it when it's taken from you.

On Friendships & Children

The accumulation of friendships, more than material possessions, is the essence of a life well-lived. When you pass out of life, you leave all of your things behind and take only the love you have accumulated through relationships in your life. I could not endure what I'm going through with this illness without the love of family and friends to sustain me and give me the emotional quality of life that I am now lacking in my physical health. Having so much time for thinking now that I am in recovery from treatment, I often contemplate my friendships and wonder what it is that binds friends together over the passage time and the obstacles of geographical distance. My brother Zhivago says he's amazed that I have been able to keep up so many friendships that could have easily dissipated over the years for exactly the reasons of time and distance. I tell him that true friendships maintain themselves. However, even if the friendship exists in our heart, some effort has to be made to remind our friends that we are thinking of them and continue to love them even though it's been a while since the last phone call, letter, or visit. Although the people we love may be scattered across the globe, we bind them in our hearts so that they always feel near to us when we need them the most.

Yesterday was my friend Frank's birthday. We met about 9 years ago when he and two of his friends came from Australia to travel through South America and wind their way up north to the States. We befriended one another through my sister's friend Katie, who had met the Australians while traveling herself. For 3 brief weeks, Frank and I spent time together with Nina and her friends, sowing the seeds of what will essentially become a lifelong friendship. We had picnics, listened to music, took lots of photos, read poetry from Frank's notebook, talked about his beloved nieces and nephews and life in Australia, and just generally basked in the joy of a new and exciting friendship. Even though we knew each other for only a few short weeks, we have remained friends over the years because Frank possesses a depth of feeling, a profound sensitivity to the beauty of life, a generous heart and a beautiful soul. He wrote me an intensely thoughtful letter recently, and I want to share an excerpt of it because we both love kids so much. He wrote, "A child's honesty reminds me of our friendship. It is also pure, free of wants or needs, never asking why but just knowing true." We celebrated Frank's birthday that year with a chocolate Tasmanian Devil cake. And although we have not seen each other once in all the years that have passed since then, we have never failed to wish each other happy birthday each and every year since that fateful summer. Our friendship has been one of reciprocity of spirit, not one of physical proximity. That is why I am assured of its quality and grateful for its duration.

Yesterday, my friends Kat and Karen and I had a play date with all our kids. As we sat at the kitchen table eating gourmet bagels and homemade puff pastries, we supervised the chaos of 6 kids running around with balloons, sidewalk chalk, Tickle Me Elmo, juice boxes and chicken nuggets shaped like dinosaurs. I see my girlfriends more regularly now than I used to since they are both teachers with summer vacation off. It was cute seeing our kids share sips of their juice and giving each other bites of their food. We can already see the next generation following in our footsteps nicely. Our children make women like us feel strong and vulnerable at the same time. Karen shared some scary news regarding her own health yesterday, and as the three of us stood around in disbelief, shedding tears and hugging, Karen explained how the news affected her first and foremost as a mother. Bad news about your health essentially changes your complete outlook on life when you have children who you are responsible for. None of us can change when we die or how, but we can only choose how we are going to live now. Knowing Karen, and for all the reasons we are friends in the first place, I know she will not let this overcome her. She has a joie de vivre and the kind of optimism that will not be smothered easily. As friends, we will take care of each other and exercise the kind of vigilance that will serve to fiercely guard each other's health and happiness. Karen can be assured of the quality and duration of our friendship as well because I pledge to be there for her as she has been for me.

Patience for the Patient

To my great surprise this week, I discovered it was already August! Time and space is a foreign country to me lately, and like a lost traveler on holiday, I am constantly asking what day of the week it is. My days pass alternately in a buzz of activity or in an oblivion of heavy sleep following intermittent fits of pain, the final vestiges of treatment. Although most of the side effects of the chemoradiation have subsided, I am leveled daily by fatigue. Of course, that may simply be attributed to the fact that I'm the mother of twin 2-year old boys. I've noticed a pattern of really good days where I am infused with the energy and determination to accomplish much as a means of reclaiming some sense of normalcy. But after pushing myself to an unseen limit on those days, I collapse into a dopey state of exhaustion and fragility on the next.

On good days, I am up early to hug my sons good morning, make them breakfast and enjoy it with them. Summoning new energy later in the evening, I manage to cobble together a gourmet dinner with my nephew Connor as my sous chef after being inspired by an episode of Everyday Italian. In between my re-discovered obsession with food preparation, I attend Connor's soccer practices, go grocery shopping, play at the park with the kids, visit friends, and do some laundry and housework. It's all a part of my efforts to re-attend to the details of life by not being a patient for a few hours out of every day. But inevitably, the whir of activity on any given day results in low energy and mostly bed rest on the following day. The first day I was able to drive myself again, I was happy to linger behind a big trailer going only 55 mph on the freeway so that I could relish the metallic brightness of passing cars and savor the lush summer scenery, a welcome change from staring at the walls all those weeks in convalescence. Lately, I tend to walk more slowly but I take in so much more of my surroundings. Although tired and unfocused at times, I really do try to have quality conversations and listen to others more attentively than I used to. When possible, I dedicate my full attention to Rowan and Spencer when they want to communicate with me. The result of being with them most of the day instead of having them in daycare has resulted in an explosion of their vocabulary, tactile skills, and social interaction. Much of that has to do with the daily involvement of Zhivago, Toni and Connor. I am so impressed by the development of my little sons into funny and amazing little persons of their own. They are growing up so fast!

This week, my cousins are visiting from all over the county for our family reunion. Thuy, her husband Aaron, their 3-month old baby Zuri are in from Hawaii. Carolyn came in from California, and newlywed Uyen and her husband Carsten flew all the way from New York. My uncle and aunt are here from Vietnam, visiting the United States for the very first time. Because this assemblage of extended family is unprecedented and not likely to happen again any time soon, we hired a professional photographer to chronicle our reunion. We planned this back in May and here we are already in August, with so many reasons to celebrate! It is unbelievable to me that so much has happened since my diagnosis only 3 short months ago. My life has taken a drastic turn, been shaken inside out and upside down, and here I am with my entire family and so many re-affirmed friendships in the tiny space of 3 months to absorb the enormity of it all. Into every life, a little sadness must fall so that we can learn to truly appreciate all that we have to be joyful about.

Before I drop off to sleep every night, I remember to say a prayer not only for myself to get better, but also for all my friends and their family members who are battling cancer- just as I promised that I would for them. When I wake, I am thankful for each and every new day, despite the current struggles with my health. I am grateful to many, many friends for their love and help during my illness, and to my family for their constant love and support. My sons are the light and love of my life, and their names are on my lips first thing in the morning and last thing at night. Although I have not quite been myself lately, I have also realized that I will never be that same person again. Illness has made me a patient, but through this experience I have also learned to BE more patient. More importantly, I am grateful that everyone in my life has developed patience for the new me. "Be kind to others, for they may be facing a harder battle." --Plato

Desperately Seeking Normal

Hello! It's been 3 full weeks since the end of chemoradiation and I am slowly but surely on the mend. The sunburned tissue is healing, the freckles on my fingers and my tongue are fading away, my appetite has come back, the pain has mostly subsided, and most importantly, my boys are home with me again! How I missed them during those long and arduous weeks of treatment. Now I am spending my days healing by cuddling them, getting big hugs, "talking" with them, singing silly songs, dancing to SpongeBob Squarepants and just being a mommy again. Every little moment with them is an adventure, and never again will precious time with them be taken for granted. I feel that I am being well-rewarded for the weeks of tortuous treatment, so that I can come out on the other side ready to enjoy my kids again with all my might.

For a time, the world at large seemed so scary to me. For many weeks, my life consisted of shuttling back and forth between my house and the hospital for treatment, attached to a chemo pump 24/7. Then I was actually admitted to the hospital for 5 days, and I literally did not step across the threshold of my hospital room door for the entirety of my stay there. I lugged my IV stand around with me within the confines of the room, but not once did I step outside that room because it became my safe haven. When I was released home, finally disconnected from all the treatment equipment that served to remind me that I was not normal, the couch became my cocoon and never once did I linger outside even during the balmy July days. I was sick, racked with pain, in a haze of drugs, missing my kids, sometimes lonely and a little depressed. I would lay on the couch, staring out the window and succumbing to morbid thoughts even as the sun shone on and the clouds drifted by. But I was saving all of my energy and courage to attend the wedding of my good friend, Lam. I could not imagine missing it, but the idea of re-joining the real world terrified me because I felt fragile and alienated from anything remotely normal.

There was no way I was going to miss the wedding, so with pain pills in hand and hope in my heart that I would make it there and back without any sick episodes, I ventured out and was encouraged by the prospect of reuniting with my Vietnamese 214 friends. There was so much anxiety about dressing in street clothes and leaving my house. I even worried about what I would be able to eat at the wedding banquet. My friends Phuong and Karen were appointed as food police to ensure that I did not eat anything that I might have to pay dearly for later if it didn't agree with me. After treatment, my appetite was slow to come back and I was still battling the psychological fear of food. Throughout the meal, I kept leaning over and asking Phuong if I could eat any honey-walnut shrimp or stuffed crab claws. She would dutifully inform me that I could have maybe one or two shrimp and only half a crab claw since it was deep-fried. I could only imagine what the people at our dinner table were thinking since it probably sounded as if I was asking for permission from another adult to eat. I made it through the entire wedding without incident, and was proud that I had again joined the current of life instead of letting it pass me by.

I have my good and bad days because fatigue is still a constant enemy, but the past week has brought me ever so much closer to normal, even though normal has been re-defined for me. But I'll take what I can get, and I can now enjoy life again through new eyes. I am re-connecting again with long-lost friends and have had several truly good conversations in the past week, most notably with Jodie and Jenny. I realize that I am still not quite myself and yet my self has been distilled into a purer form through this experience. I cannot even begin to pay back the kindness of family and friends as they've helped me through this, but as Jodie put it, "You don't pay it back, you pay it forward." I hope to be able to do this in whatever way I can manage to in the years to come, heaven willing any time given to me. My sincere thanks to all those friends who have called, sent cards, visited and given me kind words and good energy in order to heal. There is a Vietnamese saying that roughly translates to something like, "Friendships multiply joy and divide grief". Or alternately, "With friends, joy shared is doubled and sorrow shared is halved." These words represent a profound truth for me and I can only feel humbled and grateful for both the caliber and quantity of friendships in my life. I hope I'm around a long time so that I can continue to pay it forward. My love to you all.