Kurt and Kat

Life is just beginning

2009-10-12T19:07:00.000-07:00

With good friends in Napa Valley….and no, that’s not my wine, just a prop.

I woke up last week with an overwhelming feeling, as if life has just now begun. It was a feeling that everything before that moment had happened so as to prepare me for what’s ahead and that the world will open up to me offering me more vibrant experiences, greater adventures and richer relationships. Everything is possible again.

It all started with food (for me it usually does). For the first time, last week I ate fresh green beans carefully picked from the farmers market the day before. I insisted that I cook them myself: quickly boiled so they are still bright green and crispy, then tossed under some cold water so that the cooking process stops, and drizzled with some extra virgin olive oil and sprinkled with sea salt. They were AMAZING. It was like I was eating from the earth again. Not a processed, over cooked food like I’ve been forced to eat in the last few months-- just good ‘ole mother nature’s candy. I closed my eyes and savored each bite while visions of plump, moist soil and bright sunlight filled my mind. I’m weird, I know. But to have been denied such perfect beauty knowing that my stomach wouldn’t handle it, all the while knowing that what my body needs most is good fresh food, has been such a struggle for me.

Last week’s green beans made me so happy and it was also a great sign of the progress I’ve made recently. I haven’t been this happy and fulfilled in a long while. I guess these days it really doesn’t take that much. And I have a feeling that it won’t take that much to impress me for many years to come. And that’s why I feel my life is just beginning. What else out there will amaze me? What else out there will I truly be tasting for the first time? So far I have found lots of things that I’ve been doing all this time and only now am I seeing their true value, strength and potential: my relationship with my husband is a good example. As I’ve said in my last entry, I see the well of love that we’ve tapped into which has carried us through this challenging time. I love that we now swim in those waters and I can’t wait to see what else we can accomplish together. Another thing I’ve uncovered, that I didn’t know was there all this time, is my writing. I have always loved to write, but now writing has taken on a whole new meaning for me: a way to express myself; a therapeutic, creative and enjoyable hobby; and maybe even my next career move. I have also seen the strength in my relationships with my family: I’ve grown to trust my mother and let her into the private places of my heart which has allowed the love to flow more freely between us; I have seen the true dedication of sisterhood as I watched my sister make many sacrifices to be with me; I have had countless spiritual and heartfelt conversations with my father that have not only awakened within me my connection to greater humanity, but also to his never-ending love and dedication to me and I have challenged my brother to not just see me as his little sister, but the best friend I will continue to be until the day I die. I could go on and on with all of my relationships with friends and family that have become more vibrant because of this challenging episode in my life. They have changed my world for the better and I will always be thankful to them for helping me start over again.

I guess if you want to find how much you love something, take it away and observe your feelings. Well, being immobile and disconnected from the world has only strengthened my love for it. I have had dreams of growing a garden full of lush fruits and vegetables. I have had visions of building communities through the arts. And I have missed my friends and longed for the strength to make contact with them again. I have also gained much more confidence in my ability to do whatever interests me because not only is life short it’s also just waiting for me to live it.

I’ve never been challenged in such a physical and mental way as I have recently. And my development hasn’t been perfect by any means. For instance, while I was in the hospital I had an enormous amount of strength and perseverance. I would walk the halls every day and do my meditations. But when I got home and started to get sick again I fell back into fear and weakness. I lost a bit of hope. I had irrational thoughts that I’d never eat normal food again, I stopped walking around and stretching, I just sorta went limp. In some ways it was good, it stopped me from hurting myself by doing too much. But in other ways it prolonged my recovery. I feel that I might have lost the balance between being kind and patient with myself and being fearful of anything that hurt. I have since stopped the madness and have stretched, walked around more and I’ve even tried foods that until recently would have been a one-way ticket to the bathroom. So where I have not done everything perfectly, I can at least improve going forward and work on forgiving myself for any wrongdoings in the past. I guess if I learn from my mistakes then they no longer become mistakes, but rather opportunities to grow.

I feel I’ve been reborn into a life that is more aware, more present and more available to others. I’ve gone from being a very private person to one that opens up to strangers about the trials of cancer. And I have found that it’s less a platform for me to complain or get sympathy but often an excuse for others to talk about their own tribulations or difficulties with their own health -- and I find it captivating. When I let my guard down and stop pretending to be what I believe is the image of myself, I get to see others as they truly are and not who they think they are. When I take the time to listen I get to hear such inspiring stories because, just like me, they too have a fascinating story to tell.

Angels in my corner

2009-09-10T20:31:00.001-07:00

At the ER on Sunday the 23^rd of July at 2am. My throat was too swollen to swallow anything….the joys of chemo I guess. As you can see, though, my hair is still in place. Remarkable, considering I’m still seeing lots drop off. I’ve never been more grateful for thick hair.

After a rough few weeks I’m starting to feel a little more like myself, unfortunately my body hasn’t gotten the memo yet and is still moving in slow motion. I haven’t written in a while, not because I didn’t have anything to say, but because I felt I didn’t have anything all that interesting to say. Unless, of course, you find elaborate design ideas for a bathroom that accommodates the nighttime visitor that just wont leave -- or the even more special visitor that requires two toilets at the same time fascinating, and I’m assuming you don’t. So I decided to spare you.

In the last few weeks I’ve done something quite remarkable, and I have to say I’m really quite proud of myself -- and I’m not talking about coming up with a recipe for a palatable shake that has an astonishing 40 grams of protein in it, although that is something I’m also very happy about. No, I did something that I don’t normally do and something that frankly I need to do more often – I asked for help. And after I asked for help I actually started relying on other people to be there for me in a way I never have in my adult life. And you know what? I’ve felt more love, more trust and more connection to humanity than ever before.

After a week of being home I started to get really sick everyday. The kind of sick where you don’t want to be alone because you’re scared you might pass out from the pain and you’re scared you can’t get yourself to your medications and you’re scared that even doing the smallest thing might set it off again – not to mention you’re just plain scared and that should be enough. I had to stop eating solid foods, I had to order my medications in liquid form so that I could pump them into my feeding tube and I had to stop running around my house acting as if I felt fine. I had to give up and be a patient.

I’m going to go on a little tangent here and I guess I can blame it on the meds, but here it goes. Kurt and I fell in love during a magical few months just when New York City was changing from it’s coldest to it’s warmest in early 2003. We have moved across the country together leaving friends and family behind. We’ve fought about where the buttons should go in our new home and we’ve debated about how many toys our dog should have. We have encouraged each other to dream and try new things and have been patient when doing the same ol’ thing seemed best. And now we can add to the list: we have saved my life -- and in the process, healed my soul.

When I was in the hospital and Kurt was tenderly giving me my sponge baths I thought to myself, “Well Kat, I guess the honeymoon is over.” I explained this to my Aunt Charlene who said, “Well, maybe it’s just begun.” I didn’t agree with her when she said it, but now I couldn’t agree with her more. The honeymoon has just begun. We have tested our strength and what’s been revealed is that we are so rich with love – a love I feel we’re just now tapping into. I have never relied on someone more, asked so much of someone before, and I’ve never been so happy that I did so. Kurt has stayed up nights with me only to go to work the next morning at 4am -- and on some days once he got there he’d have to just turn around and come back (which he would do in record time). He’s had to be Mr. Mom to Fenway and me, putting his life on hold. And on the toughest days, he’s had to just sit with me without complaining about the helpless feeling in the pit of his stomach.

Kurt did so many wonderful things for me ever since I left the hospital, but what’s more, he did it with love, patience and kindness. Never did he make me feel like I was a burden or a pain in the you-know-what (even thought I might have been). You might think this is trivial, but for me this is big, mainly because I’ve never asked it of anyone. I’ve always been a very independent and self-reliant kind of person. And that behavior is starting to look silly to me now because all this time I’ve been missing out on all this love. I see now that opening myself up, being vulnerable and asking for help are the gateways to sharing my human experience in ways that are deeper and more meaningful -- and that in doing so, I can also become more trusting of others because I allow them to prove to me that, when I need them, they will be there.

Another angel in my corner right now is my mother. After a few weeks of Kurt running around for me and trying to fulfill all his obligations at work we decided to call in the “big guns.” In my mother’s words, “She couldn’t get here fast enough.” She ‘s been our rock ever since. I say, “our rock” because she’s just as much here for Kurt as she is for me. She tirelessly keeps the house clean, administers my meds in my tube all during the day and night, she sets up my feeding bag, she cooks our meals (even the complicated ones I pull from my recipe book). All that’s missing with my mom is her cape – she’s our superhero and we could not do this without her.

Relying on my mom is different than relying on Kurt. For one I have to remind myself that I’m not sixteen anymore and I better watch my attitude (I can’t be the only one who reverts to a child whenever I’m with my mom, right?). Also, I can’t get confused by the identity crisis: you’re the parent, then I was the parent and now you’re the parent again….arrrrggggg…. how did I let THIS happen?! With all of this confusing stuff going on I have to say how unbelievably proud of my mother I am. She has graciously put her life on hold, run up and down our stairs with loads of laundry (hard for even me and she’s seventy) and she’s been so patient with me -- even going through the trouble of doing things she’s done all her life, but now doing them my way (micromanaging is something I’m actively working on and will probably write about in future blogs). She has been here for me in ways I haven’t seen since I was a child – more to the point, in ways I haven’t let her be since I was a child.

The last few weeks have been filled with lots of new experiences: watching TV all day (I wish I could say without guilt), sleeping in until 11:30am and still waking up tired, going to the ER on a Saturday night, buying a TV for our bedroom (something I vowed never to do), hiring a dog walker for Fenway (again something I vowed never to do), weighing myself everyday hoping that I’ve gained some weight back, and the saddest one of all – pouring a glass of wine that I could not drink. My life is filled with all these little new experiences that add up to a pretty interesting adventure, but this adventure is one that I have little control over, I can really only observe it. This is hard for me because I’ve always made my own way, ready for a challenge and suited up for battle, but now I’ve raised the white flag and I’ve had to surrender to the moment. I’ve learned that I need to be honest with myself and pay attention to what each moment brings. My full recovery will take some time and right now I feel it’s best to just sit back and try to enjoy the ride. And in addition, I’ve now learned that what makes an adventure most fulfilling is the company of some good travel buddies whom you’ve invited to ride along.

Finding comfort at home

2009-08-14T11:45:00.000-07:00

Fenway is celebrating her 3rd birthday today by sleeping the day away.
Our schedules have never been so similar.

It’s a beautiful day today -- sunny without a cloud in the sky. As the wind blows, the wind chimes and leaves make their music together. And glistening in the sun is a single thread of a cobweb that is strung across our yard like a tight rope. It moves up and down with the movement of the trees. And it billows as the wind tests its strength. Such a remarkable feat for one determined little spider, for the silver thread is about six feet across and eight feet off the ground. Diligence and perseverance come to mind as I picture this little spider setting up this complicated and elaborate trap, just to get some food. I can’t help but think that I know how it feels…I am calling on all reserves of strength and perseverance as I, too, try and nourish my body. I never thought it’d be so hard.

Along with my tube feedings at night, I’m supposed to get in a certain number of calories and proteins to sustain me and help my body heal. And while I’m grateful to have an appetite, I’m challenged by what my body can (and can’t) handle, just yet. Unfortunately, it’s all about trial and error right now, and an error can send me into two or three days of pain which then make it even harder to eat. The only thing I can do is just keep on going, keep on tinkering with the “formula”. I’m sure the little spider that sent out her thread to be carried by the wind had to give it a few tries until -- finally -- one stuck. She, too, might have needed to go back to the drawing board several times to get a fresh perspective on things. And, in some ways, she’s like me – she has no choice but to keep on trying -- we have to eat to live.

I’m pushing myself every day because I have hope -- hope that one day, I will get this right and all these challenging symptoms will go away. Hope that even my difficult menopause symptoms are just temporary. I know that I’m supposed to live in the moment, but sometimes it’s nice to dream about the future. And my future holds for me chips and salsa, chocolate cake and ice cream, and cheesy lasagna, all while I drink a beer and watch a football game -- a little slice of heaven if you ask me at this stage…or, if not exactly heaven, a sunny day without a cloud in the sky, with the music of wind chimes inspiring me to dream…

Going Home Today!

2009-08-07T15:19:00.000-07:00

Maybe if I manually inflate, I can float all the way home!

It really doesn’t seem real, but today we are going home!

We met with Dr. Mansfield yesterday who said we could go home if we were ready after which we sheepishly admitted that we had already booked our flight. In the meeting he gave us nothing but good news:

1. The pathology report came back with no new surprises – the all the disease that was removed is considered to be the same low-grade carcinoma and nothing bigger or scarier.
2. He feels that the amount of cancer found is within the bell curve, and left-of-center, at that.
3. He can’t believe that my recovery has gone so quickly and is literally speechless about it.
4. Everything that was removed during the surgery he expected to be removed: the spleen, the omentum, the right ovary and, of course, the appendix -- along with a small part of the small bowel and colon.
5. He took his time (10 hours of surgery) removing as much disease as possible and he feels confident with how well it went. He removed disease from the left and right diaphragm, the liver and surrounding area, the porta hepatis (what ever that is), the lesser sac along the posterior wall of the stomach, behind the spleen and of course the spleen itself, the space around the caudate lobe (don’t know what that is either), the appendix, colon and small bowel, the cecum, deep pelvis, a pocket of disease on the left side of the rectum, around the scar tissue where the left ovary once was and of course, not to feel left out, the right ovary.
6. He said that the occasional low-grade temp, the all-over body-aches, the inability to take a full breath, the clumps of hair that are starting to fall out, the debilitating fatigue, the bloated belly, the inability to stand up straight and the subsequent backaches, the full feeling, cramps and the headaches are all the joys of my post-surgery recovery and most importantly, they are all very normal. In his words, the symptoms might last 3-5 months, but he also said that I’d be in the hospital for 3-4 weeks so I’m going to safely (and wishfully) assume that I’ll be feeling better by the end of October.

We are very happy to be going home. I can’t wait to give Fenway a big hug (she hates hugs, but patiently waits for me to finish). I can’t wait to make my own food that isn’t covered in butter or deep-fried -- some of the hardest things to avoid when going out to dinner in Texas. I can’t wait to go to the farmer’s market on Saturday morning and get bright colored veggies and juicy fruit for my blender. And I can’t wait to sleep in my own bed.

Not surprisingly, I am a little apprehensive about a few things once I return home. It takes so much energy to do even the smallest tasks (sorry to all my loved ones that I haven’t called back, returned emails or sent thank you cards to yet, I’m on slow speed these days). I have a really hard time seeing things that need to get done and just sitting back and not doing them. I’m going to have to learn how to just let things go. I’m also going to have to learn to let people do things for me, and of course, in their own way. I’m going to have to be patient with my recovery. I will not be able to pick up where I left off and the sooner I get that into by thick skull, the happier I’ll be. Speaking of thick skulls, I will also be losing my hair for a while and we don’t know just how much will stay in. The doctor does not think I’ll lose it all, but ultimately we have to just wait and see. I guess I’ll be putting on my old Halloween hot-pink wig if we go to dinner. Actually, at the right restaurant in the Mission I might just fit in! Secretly at times, I have wanted to be that cool chic with pink hair and combat boots. Of course I’ll have to work on the angry-at-the-world look on my face, but I’m a trained actor…I can pull it off.

I am so grateful that everything has progressed so quickly. In fact, it’s progressed so quickly that I almost feel like we’re forgetting something. Did I actually have major surgery or did the doctor just cut me open to sell my spleen on the black market? I have cancer, but oddly enough I have to remind myself sometimes. I’m sure I’ll feel less like a cancer patient once I leave MDA -- or as we call it, “the campus”. I have to say that there is a sense of accomplishment that is making my heart smile. I have faced harder times in my life, sure, but this is the most public challenge I’ve ever faced. And I feel that with the help of my family and friends, we all passed through this test with flying colors. I have more confidence that I can do things that are difficult and challenging both mentally and physically. And I’m far stronger than I ever thought, knowing that I have wonderful friends and family that will be there for me when I need them.

Homeward Bound

2009-07-29T11:36:00.000-07:00

My new friend, Kike.

Never underestimate the therapeutic value of a good finger puppet conversation.

Ciao! Au Revoir! Adios! Namaste!

Phase One of my recovery has been completed. I’m going home today!

I’m excited and thrilled, nervous and scared. I know I’ll do fine on my own, but it sure has been nice being taken care of by all the kind and lovely nurses. I will miss my call button – especially when I get break-through pain in the middle of the night and the nurse administers my pain meds in my tube without me having to wake up fully. (My new call button is my sleeping husband, who is harder to wake up than a bear in hibernation!) I will miss our little love-fests where I go on and on about what wonderful nurses they are and they go on about what a good patient I’ve been (see #6 below). I will miss the doctor’s visits, one at 5am and one at 8pm, where I can ask as many questions as I can possibly think up, the most important of which as been, “When will these tubes be removed???” (in case you are wondering, 6 more weeks). I will miss Kike (pictured above). Her laugh is infectious and has filled my heart with happiness and hope for the future. I wont miss the constant beeps and buzzes, the frequent visitors in and out of my room through the night and the blood-thinner shots (I’m starting to run out of available skin on my arms and legs). And I wont miss the hospital bed and consequent back pain it has caused…

I am looking forward to seeing the real world again. I know that it has not slowed down since my withdrawal and I want to do my best to stay on “island time” and keep it slow and easy. I’m looking forward to getting a restful night’s sleep and snuggling with my hubby. I’m looking forward to expanding my stomach so that I can eat real food one day. (I will be doing the tube feedings at night until I can get in enough calories on my own.) And I cannot wait to look up and see the sky, even if it is 101 degrees outside.

Phase Two of my recovery will be spent at the Rotary House Hotel (connected to MDA) for the next 10 days. The doctor wants to see me next Thursday the 6th of August after which we will be allowed to go home, barring any unforeseen complications. During this time I am supposed to eat and rest as much as possible. I have a feeling we’ll be playing a lot of cards or if Kurt has his way, Bingo in the common room.

My doctors and nurses have expressed great enthusiasm over my quick recovery. I know that most patients that do this surgery have had to suffer through more days of pain and trauma than I have and I’m so grateful for the relative ease of my journey so far. I know that I have not done this alone and can take little credit for it. My doctors and nurses are the gatekeepers to my health and longevity and they have graciously come to my aid with wisdom and skill. My husband has juggled so many things at once ever since my diagnosis and still when I see him he makes me feel as if I’m the only thing that is important to him. My family has been available to me on numerous occasions on every issue you can think of and I go into the future with confidence that our bond will only grow stronger because of this. All of my friends and family have astounded me with their outpouring of love, whether by phone call, email, package, note or visit -- they all have touched me with their generous spirits.

My cousin Ki, who is on his own cancer journey, said that “attitude is everything,” and I owe him a lot because I have enjoyed applying that theory and finding out for myself that it is indeed true. It was attitude that woke me up with a smile every morning even while knowing there were challenges ahead, therefore lessening the stress that can eat away at anyone’s good health. It was attitude that went to the gym and ran the stairs that connect the hills near our home to prepare my lungs and heart for surgery. It was attitude that helped me drink kale and spinach shakes everyday to get my gut working strong and my insides clear of toxic build-up. It was attitude that did origami to relax instead of turning on the TV. It was attitude that did guided meditations instead of asking for more pain medicine. It’s attitude that tried Motrin for pain and found that it works for most of the time therefore lessening the amount of heavy drugs that go into my system. And it was attitude that got me out of the hospital in record time to the amazement of every healthcare provider that knows the average stay is much longer than mine, even for the young ones like me. All I did was keep my chin up and the rest just fell into place. And in my humble opinion I feel the biggest positive factor in my quick recovery goes to all the prayers, and thoughts you have all sent my way. I did very little in comparison to the power you all selflessly created collectively for me. I have to say it’s a whole lot easier to have a positive attitude when you feel loved and cared for. I was not alone in that operating room and I’m not alone now as I begin my next phase. I will be forever grateful to each and every one of you.

Hello from the other side!

2009-07-24T15:32:00.000-07:00

Enjoying a visit from my nieces on July 23rd

One week, three days and 45 staples later here I am, alive and on the mend. I was told that I wouldn’t remember much of the first week, a thought I was very much looking forward to -- however that was not so much the case. After waking from the surgery (two hours after), I remember that my blood pressure was too low and that the recovery nursing staff decided that more pain medication was not advised, something I completely disagreed with for obvious reasons. I remember that while being wheeled to my room I saw that the corner rooms were bigger and I debated how much pull I had to actually request one -- I’m guessing those rooms should go to the “frequent fliers” and rightfully so. I remember seeing a whiteboard in my room and insisting that the proper date be written on it everyday so that I didn’t get confused when it is…of course I should have also requested that my clock be replaced considering the hour hand has a confusing and annoying lag to it, so it always seems an hour earlier than it actually is. I remember that there were a lot of beeps, swishes, flashing lights and ticks coming from this contraption connected to me and placed beside my bed, a contraption we would later call my Christmas tree. I remember walking for the first time, the day after the surgery, and being amazed. I also remember them encouraging me to walk at least four times each day and thinking they had lost their minds.

By day two after the surgery I was much more aware of my surroundings, and people’s faces didn’t look like dry, cracked paintings anymore (one of the more trippy experiences I’ve ever had). My room had been decorated with cheerful faces thanks to my dear sweet family and filled with balloons, gifts and cards thanks to all my kind and thoughtful loved ones. I was sleeping a lot and my pain was moderate thanks to a constant drip and handy-dandy pain button. I had a few wonderful and dedicated visitors who traveled far to see me even if only for 5 minutes.

After a few days post-surgery I had made good friends with all the nursing staff: Rowena the sweet one in her first trimester who can relate to my constant nausea; Catherine the dedicated one who literally runs to my aid (don’t have much time to get to the bathroom these days not to mention I have to lug a Christmas tree in with me); Sugi the spiritual one, who, after I broke a fever in the middle of the night, told me that God will give me strength (after which I simply said, “God gave me you -- and perhaps a Tylenol suppository wouldn’t be bad either”).

One week after the surgery, I’m feeling better than I ever thought I would be. And I am playing by the rules a little more:
1. Sleep when you can, because nights in hospitals are no different than the days. It’s like being in Vegas, but without any of the fun.
2. Abdominal cramping is what one should feel after one’s intestines were cut, scraped and doused with liquid chemo -- so take a deep breath and relax.
3. Nausea is no longer a punishment for a wild night out on the town that got a little out of hand, but rather a reason to call the nurse in to remedy the situation.
4. Walk when you hurt and walk when you feel good because the body was not built to sit for too long and it only slows the healing process.
5. Just because you have a feeding tube constantly giving you nourishment does not mean you’re not still hungry, so walk a little slower when passing the food cart. It’s as close as you’re going to get to real food for a while, so take advantage.
6. Saying “please”, “thank you” and “you’re the best!” goes a really long way with people that have to work 12-hour shifts.

I have a new appreciation for the little babies that are learning to do the same things I am -- pass gas, poop, and keep liquid foods down. I also have a new appreciation for my youthful body that is in all reality healing quite quickly. If I don’t want to get out of bed for a walk I simply think of the older people (and everyone on the gastro surgical floor is older) who have to walk even more than I do because of their high risk of pneumonia and blood clots. I have a new appreciation for family and just how therapeutic they can be – after 12 hours of going to the bathroom every 30 minutes, the second my sister walked into my room to help me it miraculously stopped. I have a new appreciation for what marriage really is, a bond that can never be broken no matter what trying times you both might face. And I have a new appreciation for Kurt, or as we call him Mr. Sunshine, who has somehow simultaneously managed to be my friend, lover, caregiver, rock, inspiration and personal sponge-bather-extraordinaire. Girls, there’s nothing more humbling than explaining to your husband that wiping from front to back is hygienic and that’s how you’d like him to do it.

I like to picture myself at home eating cheese and drinking wine while I prepare dinner, walking Fenway and rubbing her ears, going to my favorite bakery for cookies and getting fresh flowers for the house. I know that these moments are just that – moments -- and that sometimes the good moments will pass more quickly than the bad ones. But there is beauty all around me here and if I stop and take a deep breath I just might see it -- whether in a smile from another patient that says, “if I can do it you can do it”; a card from a loved one that inspires me so much I read it five times; a hug from a family member that feels like home; or a sympathetic glance from my husband that makes me feel like I’m not alone in this. All in all, I have to say that I am one lucky girl.

An open letter to my post surgery self:

2009-07-11T21:29:00.000-07:00

I saw this pin in a store the other day and couldn’t help myself.

Hi Kat,

So I’m guessing that as you read this you are either feeling pretty rotten or pretty awesome, depending on the amount of pain medications you are on. Either way, know this – I’m so proud of you. You made it! Now stop being a slacker and get off your butt so you don’t get blood clots!

Here are a few notes I want you to try your best and remember:

1. Your friends and family are the foundations upon which none of this would even be possible, so do them all a favor and let them help you. They did not come all the way to beautiful Houston, Texas just to go to the Hard Rock Café and walk around in 100 degree weather with 90% humidity and a constant chance of thunderstorms for the thrill of it.

2. Your doctor said that you will be in the hospital for 3-4 weeks and for one week after that you have to stay close by in Houston. He also said that your recovery will last 3 months (you will have a feeding tube and drain tube for 3 months as well). In the end, you may not feel yourself for up to a year. Kat, I know you’ll try to be patient no matter what the outcome -- however, I say you will be out of the hospital in 3 weeks or less, your recovery will be 2 months and you will feel yourself again by 5 months. Why? Because I know you better than anyone else -- you’re a fighter.

3. Pain medications, in this particular situation, are a good thing. They help you heal and they help you walk around without too much discomfort. Please do not feel guilty or think they are a sign of weakness when you take them. Worry about getting off them when the time is right -- when the pain is manageable.

4. You are not going to be able to do all the things you did before the surgery for a long time. I repeat: You are not going to be able to do all the things you did before the surgery for a long time. So let it go.

5. Be nice. We all know that you have some silly, weird cancer and that you still haven’t figured out what you want to do when you grow up and you just had major surgery, but blah blah blah -- get over yourself and play nice. Remember that you will look back one day and either feel good about how you handled yourself or guilty that you told everyone around you to bug off because they weren’t doing things the exact way you wanted them to be done. You decide.

6. You are probably confused about what day it is. Just roll with it -- pretend you’re at Burning Man or something. Your surgery was 8-10 hours long so you can assume that it’s probably night time that same day or the next day. There is a chance you will be in ICU, hopefully not for long, but if you are -- don’t get scared they’re probably just making sure you don’t vomit all over yourself. Remember, they just made a 12- inch incision down the front of your body, so don’t try to move your arms any more than to just push your morphine drip. Also, don’t be alarmed if you have tubes in your belly, arms, neck, back and other fun places. You already knew that you’d have a few hitchhikers coming home with you, so nothing new. What ever you do don’t pull on them!

7. I want to gently remind you that the nurses and doctors went to school for a very long time. All that they’ve learned over the years has prepared them to help you at this very moment. Please do them all a favor and follow their instructions and trust their advice.

8. Breathe, Breathe, Breathe. Modern medicine can only do so much -- your mind can pick up the slack. Take this time to check in with your body. If you can, find that pool of joy deep in your soul that is waiting for you to jump in and let go. Trust that you have power and strength and that it will be there when you call upon it.

9. Never forget that I have and will always love you, totally and completely. I promise to always do my best to keep your body healthy and your heart filled with hope, joy and love.

Best of luck,
Kat

Back from Napa

2009-07-03T13:56:00.000-07:00

After a delicious lunch looking over the Napa Valley.

We are back from a wonderful mini-vacation to Napa. It was…well, wonderful. Now I’m going through a bit of a detox while I prepare for the big surgery coming up. (Per Homer Simpson: “No deer for a month!”) So far everything is right on track. I’ve got my bag of activities once I’m there: my iPod is synced and charged, my iPhone has some of the latest new apps, my computer has been downloaded with some totally awesome games and everything is labeled with my new handy dandy label maker (I’ve been labeling my important items with my name and phone number…including - get this! - my cell phone. Not the brightest bulb on the tree these days.) I feel like I’m going to camp. All that’s missing are the fake vomit and whoopee cushions to play tricks on the camp counselors. That does give me an idea though - I’m sure that would be a first for my anesthesiologist!

I’ve had some time to reflect on the lessons learned from the last laparoscopy. Mainly I need to slow down and accept that this is going to take some time, it’s going to hurt, I’m going to not “feel myself” for a while and that drugs are good, mm-kay? Of course, not if you’re a 112 pound man eating them like candy corn at Wonderland Ranch…poor Michael.

The good news, and there is always a lot of good news coming out of the Schliemann’s house, is that the cancer is still the same ol’ cancer I was dealing with back in February. The laparoscopy gave us no “new information” which is good. I guess there was a chance that the cancer was in certain spots where it can’t be removed and therefore nothing can be done, or as my tender doctor pointed out, “it’d be a deal breaker”. I wasn’t totally aware that these were even options. There is true bliss in ignorance.

I had a nice thought the other day. I was running errands: dropping off the dry cleaning, picking up some pretty flowers for the house (thanks again Daddy) and getting some Italian fare at a deli for our dinner guests and I realized that I was doing exactly what I want to be doing at this moment (nine days before the big surgery). There is something so wonderfully relaxing about the everyday doings. Soon after being diagnosed there was a fear that came up and kicked me into gear and made me reassess my choices in life -- and trust me, when this is behind me I will do things that used to make me petrified with fear. But that day is not today. Today is for getting the most out of what I’ve been given and tomorrow is for going out and getting more. I was nervous that I wouldn’t be that happy with my choices in life, but when I stopped and asked myself, “well, are you happy?” My cheerful response is simply, “yes, I am.” When I take the time to check in, I realize that my heart is filled with peace…and these days, that allows me to breath just a little deeper.

Lesson Learned

2009-06-11T11:37:00.000-07:00

At Starbucks in Austin with my nieces Isabella and Alessandra.

One of my biggest concerns throughout all of this is the ability to be a good patient- thankful to those assisting me in my recovery, patient and understanding with the medical staff and in touch with myself to ensure I heal properly. Last week the latter was much harder than I thought and I was reminded that I’m much more impatient with myself than I ever will be with others.

I woke up after the procedure on Friday feeling as if I was sitting on a teacup ride at a carnival, the room was spinning out of control. It was all I could do to open my eyes long enough so I could see a familiar face smiling down at me with an encouraging expression. I did not like the idea of having to stay in the hospital over night, like I had to last February, and I hated the idea of my mother and husband just sitting there waiting for me to come to. So I faked it- once again my acting classes paid off! I pretended that I could see just fine and that I didn’t have that old familiar nausea feeling rumbling in my tummy. Apparently my fake-out worked because the next thing I knew the nurse took out my IV and I was being wheeled down to the elevator. Before the elevator arrived the bad feelings hit me- my body went cold and my stomach started to turn. After repeated efforts from complete strangers to offer their help we decided to turn around and go back to the recovery room. I was defeated, embarrassed and relieved all at the same time. They reinserted an IV and pumped me with more fluids and medications to alleviate the nausea and allow me sleep it off. After a few hours I was feeling much better and since everyone was onto my trick they made me walk around to prove it this time. Lesson learned.

I know the only thing I should be concerned with is my wellbeing and that my friends and family are there to take care of me because they want to, not because they have to. But it’s not always easy being vulnerable and dependant on others, in fact showing weakness is one of the hardest things for me to do- always has been. Last Friday I got to see first hand just who suffers when I act tough and ignore the realities of my pain- me. And if I’m going to beat this thing I’ve got to accept that I’m going to feel pain, nausea, scared, bored and just plain rotten and that it’s all ok, in fact that’s what healing is, a process, or as I like to think of it, a journey.

The "Small" Surgery

2009-06-05T20:22:00.000-07:00

June 5, 2009

(From Kurt)

We had the exploratory laparoscopy today so our cancer doctor (Mansfield) could see the state of affairs in Kat’s insides, specifically the ovaries. Her gynecological surgeon (Milbourne) in Houston felt that both ovaries should likely come out, given the number of cysts she could see on an ultrasound -- so we were prepared for that – which would necessitate the beginning of hormone therapy.

We arrived at the hospital at 5:15am, for a 7:30 surgery (even when I’m not working, I can’t sleep in!). She had two doctors performing the surgery – our cancer doctor to see the state of her stomach re: cancer, and the gynecologist to see (and likely remove) her ovaries. The doctors came out to speak with her mom and I around 9am following the surgery…

Dr. Mansfield said that her ovaries indeed looked swollen and there were some small deposits on the outside that were the mucin caused by the cancer. However, they decided to only take out the left ovary, and biopsy it next week to determine whether the cysts on the inside are normal or cancerous. He left in the right ovary to A) potentially preserve our fertility if the left ovarian cysts aren’t cancerous; and B) minimize what is taken out in this surgery to prevent excessive scarring prior to the large surgery in July. The good news on the ovaries is that Mansfield was assured that this is not ovarian cancer (it was still an outside chance before the surgery, but not very likely) and that what he is dealing with is “moderate but do-able”. Of all the things we might’ve heard today, that is definitely not the worst…so we’re happy.

Milbourne definitely wants to take the second ovary out in the larger surgery in July, unless there’s a “clean” reading of the left ovary, which she doesn’t suspect. So hormone therapy is likely on the horizon…but not for today.

Kat had some pretty severe nausea following the surgery again today, so we waited a good 6 hours or so to get her feeling better before we could leave the hospital. But as I write this, she is eating like a horse, whistling like a bird and walking around much better than after the previous laparoscopy – so we are encouraged overall! Thanks to everyone again for their concern and well-wishes!

"New Information Day"

2009-06-04T19:59:00.001-07:00

"Ability is what you are capable of doing.
Motivation determines what you do.
Attitude determines how well you do it."
--Lou Holtz

--Kurt’s Daily Inspiration- emailed on June 4th 2003--

Most of my days are quiet and reflective. I enjoy my morning coffee with a book about healing the body with good foods or through meditation while my dog sits at my feet enjoying her long, slimy rope. I might go to an appointment here and there, run a few errands or check off items on my “to do” list- a list that is becoming more and more trivial as the days wear on. It’s all quite nice and I know that I am blessed to have this time for myself, but every now and then I’ll get a “New Information Day” that wakes me up to the realities of what I’m up against. Monday was one of those days.

I am in Houston this week for a laparoscopy that is scheduled on Friday. I am here a few days before the scheduled procedure because I’ve had a few extra appointments with a gynecologist. It was suspected that the left ovarian cyst that was taken out in February had returned- it indeed has, and not to be left out, the right ovary has decided she wanted one too. So, with all this activity on the ovaries the doctors have decided to remove the left ovary on Friday during the laparoscopy and take a good look at the right ovary with the idea that if it looks suspicious they will remove it too. And of course, they will do what was originally planned and look at the extent of the cancer to get a better idea of what will be taken out during the “big surgery” in July. I feel like an ATM with all these withdrawals…at some point I’m going to need a deposit!

There is a fine line between being positive and being unrealistic about the severity of things and an even finer line between being negative and unrealistic about the positives in a situation. This is a tightrope act I perform everyday. And on a New Information Day the tightrope gets shaken and the net is pulled out from under me. I’d be lying if I told you I don’t get scared.

The only tool that helps me regain my balance is to think about how this new information will change my behavior, if at all. Yes, I might have to take hormone replacement therapy- millions of women do everyday and are just fine. Yes, the laparoscopy will end our hopes of another round of IVF- but the first one was successful and there are thousands of babies in need of two very loving parents. And no, our fight against this cancer does not change- we are still going to kick it’s butt with the surgery in July! I’m still going to go home, drink my kale and spinach shakes, read my books and walk my dog. So while the New Information Day might make me shaky at first, I find comfort in remembering that this new information is really not so important after all- at least not as important as making the most out of every day I’m given.

Random Thoughts

2009-05-15T08:56:00.000-07:00

In the summer of 2008 I had lunch on this bench in Kew Gardens in London. After I finished, I turned around and read these endearing words of love. I spent the next 10 minutes trying not to cry as I imagined this lovely couple happily walking through the park together.

I would just like to share with you all a few random, sometimes funny and sometimes just pathetic thoughts I’ve had over the last few months.

While getting dressed for my fertility appointments I have had spirited debates with myself over the quality of my socks (especially the underside of them). As if while my feet are in the stirrups the doctor will really be looking at my SOCKS.

I am excited that we will be going to LA to see our friends. And I find it all too convenient that I will be having a colonoscopy once I return to SF. I will eat and drink whatever I please!

I questioned whether buying clothes the other day was the responsible thing to do, given that it might be one more thing for Kurt to have to deal with should things go unfortunately for me (I know- not likely). I, of course, bought the clothes.

I have tried to come up with nicknames for the tubes that will be hitchhiking on me from Houston. The J-tube is for feeding and the G-tube is for, well I don’t really know, but I think it has something to do with regulating the gasses in my stomach. So far I’ve come up with J-LO-wer-intestine and G-8-stomach. I’m open to suggestions.

I am pleased with how well I’m taking all of this and I’m nervous I’ll get too proud of myself.

I am happier than I’ve ever been and I can’t figure out if it’s because I’m finally living every moment as if it will be my last or if it’s because I’ve finally taken the time to do things that make me happy, go figure.

I have debated in my mind whether or not injecting cancer into conversation is because I want attention or because it is, for the moment, front and center in our lives.

I’ve questioned what life is all about and have considered moving to a cottage in the country with no running water in order to see if the answer is there.

I’m not a depressed person and I really enjoy my life, but Kurt is really the main reason why I want more of it.

I feel ashamed that I have cancer, I don’t know why, so I’m going to ask my therapist and I hope she can give me a good reason for why I feel it.

I took a Salsa and Merengue dance class to laugh at myself- it worked.

Following My Gut-- Literally!

2009-05-10T11:26:00.000-07:00

February 3rd 2009- moments before my ovarian cyst removal

As most of you know we have been doing fertility treatments called IVF. The reason for this is because my ovaries might need to be removed during surgery. Also, there is a slight chance that the surgery and chemo treatment during it might send me into early menopause. IVF has been a wonderful process for us. It has filled us with hope and encouraged us to look towards our future and visualize parenthood with joyful anticipation.

With one successful round of IVF behind us, we were beginning our second. I was taking hormones that had the undesired effect of making me cranky. And in order to protect Kurt I have had to remind myself that if I don’t have anything nice to say then I shouldn’t say anything at all. It works surprisingly well. With the beginning of the second round of IVF, they did an ultra sound to look at the ovaries before starting the stimulating medication. They found a cyst on the left ovary that is most likely a normal cyst that grew as a result of doing the first round of IVF. However because a cancerous cyst was removed from that same ovary in February they were more cautious about moving forward with IVF. After consulting with some cancer doctors here in San Francisco our fertility doctor advised us to move forward because the risk was not that great.

There was an unsettling feeling in both of our hearts after hearing this. While the cyst is most likely benign, what if it wasn’t? Because this is such a rare cancer, and so little is known about it, what if the IVF has some effect that won’t be known for years or decades in the future? Even if there is a slight risk of the IVF making the cyst larger or making the cancer worse, is it worth it? The answer couldn’t be more apparent. Of course we felt that we should not move forward. But we wanted to consult with our cancer doctor at M D Anderson to be certain we were doing the right thing.

After two days of not hearing back from our doctor at M D Anderson (not the first reminder that good care does not necessarily equal personal care), and needing to begin shots if we wanted to proceed with IVF, we decided on our own that we were lucky enough to have gotten the first round in and that pushing for a second is just not worth it. Kurt and I are very lucky to have been afforded the time to preserve our fertility in these last few months. We also have always been quite firm in our belief that any child that comes into our lives, by whatever means, will be loved unconditionally from day one.

What I found most difficult about this situation was managing my relationships with the people who were administering my care. Our fertility doctor, whom we adore and respect immensely, was pushing for another round. His intentions were pure- he is there to help us have a child one day, but what he didn’t see was that we were growing uneasy about it -- and considering I’m the one administering the shots in my stomach every night, there could be nothing in my mind that was unsure. Since he sees a lot of patients who will do almost anything to have their own children, I’m sure our perspective on adoption just hadn’t been made clear yet -- not to mention we were very happy with the results of the first round of IVF. I was nervous about how to break the news to him knowing he would probably disagree (in my mind this was akin to telling a strong-minded boss how she should do her job) so I simply said I’m scared and uncomfortable with this and I didn’t go into the science and statistics of the situation. What could he say to that, right? He was kind and thoughtful and graciously accepted my feelings.

A still-looming challenge for me, however, was dealing with the disappointment and irritation over the M D Anderson staff members who did not return an answer to us when we desperately needed it. My sister being the little angel that she is, took the time to listen to me complain about the situation and I’m sure could hear the fear in my voice about feeling alone and uncared for by the very people who are supposed to save my life. She gave me the wonderful perspective that I was too distraught to see -- that people do not respond to accusations and anger, and that it would be better for me to move forward and (without irritation in my voice) ask what the best process is for getting answers to time-sensitive questions in the future. I am realizing that it really does take a village. She was so right, this was indeed the best way to handle the situation, and it worked perfectly. Of course, I’d be lying if I said that my acting classes didn’t pay off while talking on the phone to some of the staff members, but alas, here we are in a much better place with all of them. Sometimes it’s the result you need to focus on, not the emotion you want so desperately to express.

What I’ve learned from this whole situation is that following our gut was indeed the right thing to do. I know (and this was confirmed by our fertility doctor’s assistant) that, had we gone through with the second round of IVF while feeling unsure of its effect on my overall health, we would’ve been tense about it for years to come – and, most likely, the results would have been poor. But as a result of following our gut, I feel stronger because of it -- more in control of my own care and more connected with the people who are helping me through this. And I know that strength will help me in the months and years to come.

Of course being off those crazy hormones really helps too!

Gratitude

2009-04-29T09:27:00.000-07:00

April 10th 2009 @ Crissy Field with Fenway.

I keep forgetting that I have cancer. Ha!

I will be doing very simple, mindless tasks and all of a sudden it will hit me and I’ll laugh out loud. Ha!

I am humbled with gratitude as I even write these words. I know that there will come a time where it’s more a part of my everyday with the aches and pains after the surgery, or the scar smiling up at me. But how wonderful are these days now where it does not distract me. How simple and easy my life’s tasks are when I’m feeling good. I have a deep peace in my heart that I will not take for granted and wish I had more awareness of before things got more complicated.

Gratitude has always been my lighthouse. It has protected me from crashing into self-pity, useless anxieties, self-centeredness and even laziness. I could write a book on all the things I’m grateful for. The first chapter would be titled “I’m grateful for my cancer.” It has reminded me that I am loved by wonderful people. It has shown me what selfless love looks like through the eyes of my dear husband. It has given me a reason to eat better and exercise more (which has been doing wonders for my energy and disposition). It has given me reason to find happiness in the smallest details of life and to seek out the biggest wonders of nature. And it has allowed me to sit still and listen to the silence within.

_______________________

I have been hesitant to write about our schedule simply because it keeps changing on us. So, with the caveat that this can all change again, I give you all the following schedule:

Currently- IVF

May 21st- Colonoscopy

At some point in May- LA for a quick visit with our friends.

June 3rd – 10th- Houston for the laparoscopy, pre-op and blood draw.

At some point in June- Hawaii (probably Lanai for a week)

June 24th – 26th- Houston for a pre-op meeting, blood draw and possibly another CT scan.

July 10th- Leave for Houston. The surgery will be on the 14th. We will most likely be in Houston for 4-5 weeks.

Kat's Fitness Challenge

2009-04-08T20:07:00.000-07:00

Maui 2007

I don’t know about you all, but I really don’t like to work out. Just ask my husband whose been trying to get me to meet him at the gym for the last 3 years. I’d rather eat radishes dipped in cottage cheese for every meal than go to the gym and sweat. I’ve always been of the mindset that if I eat healthy and portion-control my meals I don’t have to work out. Sounds good, right? Well, I’m fining out that that’s only one part of being healthy- an important part, sure - but there’s more. I’ve decided to put myself through a fitness challenge. My goal is to get ready for my surgery. I need to have my heart healthy and my lungs strong if I want to get out of the hospital in record time. Also, I can stand to put on a few healthy pounds by gaining some muscle strength.

So here it is: I’m going to do some sort of physical activity every day. Because of our IVF treatments it has to be low impact -- like swimming, biking, hiking, light weight training, walking my dog and, of course, Wii tennis I’m sure fits in there somewhere. I’m not looking to spend two hours at the gym, just 45 minutes to an hour.

Also, I’m going to buy vegetables that I have no idea how to cook. I find that I buy the same fruits and vegetables every time I go to the market. Why not try something that looks green and scary? Or something that looks like it should have just stayed in the ground where it belongs? What about all the fruit that I don’t even know how to cut? I love jicama but I couldn’t find it in the supermarket if my life depended on it. And you never know, maybe my life does depend on it…

So there it is! It’s in writing for the whole World Wide Interweb to see -- so now I have to do it!

…D’oh!

Back From Texas

2009-04-05T19:56:00.000-07:00

This is a bracelet I wear everyday that my cousin Ki gave me in Texas. It was given to him while he was fighting his cancer and he has graciously passed it on to me. He is a constant source of inspiration to my family and I and he is walking proof that indeed ATTITUDE IS EVERYTHING.

After a wonderful visit with friends and family I am finally home. Our trip started out with a meeting with Dr. Mansfield at M.D. Anderson in Houston. We have since decided to go ahead with our treatment there and not to visit with Dr. Sugarbaker in D.C., who we have learned does not do follow-ups with his patients -- in our view, that is a crucial part of the process.

Dr. Mansfield was certainly not as upbeat as the doctor in San Diego. My cousin calls his doctor, “Dr. Doom” and Mansfield has a similarly realistic and sober approach. I personally find comfort in knowing all the facts and I have to say it encourages me to want to be one of his success stories. This cancer does not act like most cancers that spread and cause havoc on everything it attaches itself to. It simply hangs out on different organs in the stomach and pelvic cavity and secretes a jelly-like substance, which, over time, inhibits the function of those organs. So please don’t be alarmed when I’m describing the cancer and explaining where it has spread. Dr. Mansfield is very thorough and would like to do a laparoscopy before the surgery to see what he might be missing by just looking at the CT scans. The problem with a CT scan is that it is an imperfect image – and thus, when looking for this kind of cancer, it is somewhat open to interpretation. Every doctor has told us that, until the actual surgery, they won’t know for certain what they will find. This is why he recommends the laparoscopy, to get a better idea of what will need to be “debulked” prior to the surgery. From the CT scan, he sees the cancer on the liver and spleen. He will enlist the help of a gynecologist to look at the ovaries during the laparoscopy and determine from there what should be done with them. In the meantime, Kurt and I are trying to fit in another round of IVF to be prepared for any outcome. Dr. Mansfield has already prepared us for the possibility that the surgery might send me into early menopause in which case a surrogate would be necessary- or as I like to call it- “out-sourcing.”

What we are finding is that this surgery, also know as “The Mother Of All Surgeries” by patients that have gone through this, is going to be quite involved. As of now, we are scheduled to have the surgery on June 23rd- the doctor’s first available time slot. This date, where it might sound far out, is perfect for us to get a few important things done, one of which will be a little vacation where I can wear my bikini for the last time- Woo Hoo! We will also see him twice before then to give blood, do the laparoscopy and get vaccinations (in case the spleen has to be removed). The doctor told us to be prepared to stay in the hospital for 3-4 weeks and 1 week after that close by in Houston. The summers in San Francisco aren’t supposed to be that great so I’m not missing out on much. However, the summers in Houston are going to be a rude awakening to my fair-skinned Boston boy. Sorry babe!

Words cannot describe the joy in my heart to have you all in my life. I have never felt as if I was doing this alone and I find comfort in knowing that I never will. I know everyone has busy lives so please know that where you might feel that an email here or a post there isn’t much it truly fills my heart with hope and love. So thank you to each and everyone of you! -Kat

A Big Week Behind Us

2009-03-21T15:30:00.000-07:00

A good week for us, as we saw a specialist in San Diego on Monday to give us our second (of four) opinion on Kat’s condition. We were very happy with the results. Dr. Andrew Lowy of UCSD has been dealing with this particular kind of cancer for many years, and usually opts for this HIPEC technique, which he has been doing since 1999. Essentially, it is a heated chemotherapy “bath” performed during the surgery for about 90 minutes, and it is designed to kill any cancer cells that were missed during the surgery. Here is a link that has more info: http://health.ucsd.edu/cancer/patcare/hipec/how.htm. Because this chemo is not a systemic and long-term regimen, he felt that the amount of damage or side-effects of the HIPEC are generally very minimal, if any. And he feels that the chances of the cancer recurring are lower using this procedure, so the minimal risks are worth it. Overall, he was very positive of the odds that Kat has, and feels that she’s got a better-than-average chance of having this taken care of with just one surgery. Also positive was that he felt we could try for children within a few months of the surgery, which was quicker than the SF doctors had estimated. So, all in all, it was a very positive visit, and made us feel good about our chances for getting back to “normal” very soon…

Also ongoing is our IVF process – this is the fertility treatment to assist us in having children because there is a very real possibility that the doctors will need to remove both ovaries during surgery. Kat had several doctor appointments this week, and we were told that her ovaries are functioning properly, which was encouraging. This morning, we did the extraction process, and hopefully the eggs will be healthy enough to be fertilized. The embryos will then be frozen until after the surgery, when we can resume the process of getting pregnant.

We continue to be inspired by the outpouring of love and beautiful thoughts from our friends and family. It has been so encouraging to us to have this as our foundation – we are indeed quite lucky to have you all in our lives. -Kurt

An update on Kat

2009-03-13T12:19:00.001-07:00

Above is a picture Kat took yesterday on her birthday adventure to Fort Funston Park.

We are gearing up for a few weeks of doctor’s appointments. Below is the schedule of events. We’ll update everyone once we find out more information.

March 15th
We will have our second visit with Dr. Rosen, our fertility doctor that specializes in cancer patients. Dr. Rosen will be assisting us with our IVF programs that started last week and will continue until Kat is due for surgery.

March 16th
We will have a meeting with Dr. Lowy at UCSD. He’s an oncologist that specializes in PMP.

March 18th
Kat will have her first appointment with a genetics counselor at UCSF.

March 20th
Kat has an MRI at 8:30am

March 25th – 26th
We will meet with Dr. Mansfield at MD Anderson in Houston, another specialist in PMP.

April 10th
Kat will have a colonoscopy at 12:45pm. Oh, fun.

April 13th
We will meet with Dr. Sugarbaker in D.C. He is considered one of the leading experts in PMP.

Thoughts of a 33 year-old Birthday girl

2009-03-12T10:43:00.000-07:00

• 33 - year of the palindrome. I hope that this doesn’t mean the year of repeating one’s self. Maybe it’s the year of placing a mirror before me and taking a good hard look and still liking everything I see.

• I’ve never wanted, “…and many more!” sung to me as much as I do now.

• I’m going to celebrate my birthday as if I was turning nine-years old today- go to the park and eat cookies.

• Now that I have intestinal cancer do I have an excuse to fart in public?

• Something tells me I’m going to end up buying an article of clothing today…just a hunch.

• My resolution this year is to not fear greatness.

• I’m 33 today, 3-12-09. I was diagnosed with cancer 3 weeks ago today. I’m one of 3 children. Fenway is exactly 66 pounds. I’m going to have 3 cookies at the park celebrating like I’m 9. I think I’ll play the lottery with only numbers that are divisible by 3.

• Chocolate chip, peanut butter and molasses are the flavors I’m going to choose, incase you were wondering.

• Happiness is a cup of coffee someone else makes for you when you’re too tired to do it yourself.

• My favorite characters growing up were: Snoopy (see photo above), Donald Duck and R2D2. I’ve often wondered what they all have in common- this is what I’ve come up with so far...
-Few could understand them when they spoke
-They were easily frustrate, touchy and often irritable
-Mood swings, short fuzzes and ticking time bombs all come to mind
-Snoopy and R2D2 were pretty handy and quite clever, however Donald
was pretty useless
-They were all very loyal to their mates- Woodstock, Daisy Duck and
Princess Leia
-I could identify with each of them on so many levels, and still can!

• I believe in the power of prayer, positive thoughts and vibes, well wishes and love. And I’ll do my best to return it right back with gratitude and humility.

• I love my friends and family dearly.

Thank you

2009-03-11T22:08:00.000-07:00

I want to take this moment to thank all of our loved ones. I am overwhelmed by the love and support all of you are giving to us. It’s so easy to be thankful for all that we have when you all give us so much. I know that all of the love I feel from you will help to make me stronger and prepare me for the tougher days ahead. Each of you is instrumental in making me feel like I’m not doing this alone. I want so much to give you all a great big hug, but since I can’t right now, I’ll try something else…I hope that you will look at the picture above and feel the same joy in your hearts as I do when I look at it. It’s a picture of my niece, Alessandra. Her smile is so pure and full of love and it is uncomplicated by the world around her. It’s a beautiful image to look at when life challenges me, and a great lesson to me when I try to over complicate it. -Kat

Brand New Blog

2009-03-02T21:07:00.000-08:00

Thanks for checking our new blog...hopefully the comment feature works on this one....

I feel like I'm getting my life back. I'm doing things with my day that aren't so centered around the "C" word (my new term for cancer so that at restaurants people aren't looking at me with concern/that could be me.) I have to say it's amazing how my outlook on things has changed. In order to feel as if I was contributing to the world, I had been purposely avoiding things that make me happy. When faced with the possibility, even remote, of kicking the bucket-- all of a sudden all I want to do with my time is to find things that make me happy. Things like going to the theatre more, communicating with my friends more, deepening my spirituality, beating Kurt at Wii tennis...it's endless really. All of that being said, I've been blessed with a very enriched life and there is a peace deep in my heart that's OK with things just as they are. It helps to know too that my chances of dying on the highway are greater than dying of the "C" word. So, really I should have been living everyday with this attitude. I can't wait to see what I come up with next to make Me happy. -Kat

Brand New Day

2009-02-28T21:02:00.000-08:00

Just having a lazy Saturday am and enjoying our time together - looks like we’ll get some sun. Farmer’s market in the cards, once we motivate out of our PJ’s. Thanks to everyone for the kind words and thoughts and prayers - we truly feel all of your love, and it is both inspiring and humbling. We love all of you too...boy, it feels good.
-Kurt

Starting a blog

2009-02-26T18:27:00.000-08:00

It feels weird writing on a blog -not usually my thing- but I thought it would be an easy way to keep everyone up to date on how we are doing. I know that not everyone has time to check-in and I certainly don’t want to put heavy news in your inbox. Most of you have received an email from us letting you know what it is I have, if not, I’ve attached it below. So, thanks for reading and I’m sure we’ll have good news to share as this thing progresses. -Kat

-----email sent on February 27th-----
Dear friends and family,

As some of you already know, last week Kathleen was diagnosed with cancer. The good news is that it’s not an aggressive form of cancer, and she’s otherwise young and healthy -- so the doctors believe that she’s in a good position to live a long, happy life.

The cancer was found as a result of our second miscarriage, in early December. When the doctors were treating Kat, they found a large cyst in her ovary that needed to come out. The pathology came back as a rare form of cancer that appears to have started in the appendix. As her sister Christy said - these babies gave their lives to save Kathleen’s. We would likely have never found this cancer, at this stage, if we didn’t have the miscarriages.

The doctors are calling it two things: disseminated peritoneal adenomucinosis (DPAM) and pseudomyxoma peritonei (PMP). They believe it started out as a tumor in the appendix that ruptured and the cancer cells then spread throughout the abdominal cavity. These cells create a jelly-like substance that can cover the organs and cause them to not function properly. Also, the cells can create cysts (like the ones found on now both ovaries) and the CT scan revealed another tumor on the right hemidiaphragm.

The issue with this cancer is that, due to its mucinous nature, they can never get rid of it completely – it returns in 90% of the cases, and could return in 2 years or 20 years or never. So they are calling it “chronic cancer” that can really only be treated with surgery. Our doctors also believe that chemo will not have any effect on it, although this is debatable – unfortunately, because it is such a rare form, there really doesn’t appear to be enough data to tell for sure. The good news is that it is slow-growing, so not only do we have time to get different opinions now, we should be able to manage it better in the future, if it does come back. While there’s a chance it could come back in a more aggressive form in the future, that is not very likely. The major goal at this point is to get a really good, experienced surgeon who will limit the amount of scar tissue and minimize the number of complications that could result from potentially multiple surgeries during the course of Kat’s lifetime.

We still have to do an MRI and a colonoscopy to see just how much the original tumor has grown and affected the colon/intestines. After that we’ll have a better idea how much has to be removed during the first surgery. And, it appears as if both ovaries will need to be removed as well, so we’re also exploring the fertility options this may leave us.

As for us, overall, we are both doing very well. We feel very positive about all of this, knowing that it could be a whole lot worse. We know this is just a little bump in the road, but soon life will just go on and we’ll both be stronger because of it.

We have setup a website so that you don’t have to keep getting these long emails, you can just check-in whenever you feel like it. We’ll try our best to keep all the latest news on it. The address is: http://web.me.com/KurtAndKat/KK/Welcome.html

We are already feeling the positive effects of everyone’s prayers and positive thoughts -- we appreciate them so much and are really grateful to have such wonderful loved ones with us through all of this!

All our love,
Kurt and Kat