Notes from Sareana

2009-12-17T16:39:00.005-07:00

The day before Thanksgiving 2008 my family and I found out that I had a brain tumor. Seems like a lifetime ago, but really only a little over 365 days have passed since our journey began. I wish that I could now be writing a simple "wrap up" of this experience- I mean, we've been through a tough year, and can't that be over now? Perhaps that's why I've struggled with this last blog. There is no simple wrap up to write. Cancer is part of my life now and I am still coming to terms.

The day before Thanksgiving this year, actually, I got some scary news. I had an MRI and they found a "small nodule" in the resection cavity of my brain where they had removed the tumor a year prior. After two long weeks of waiting and more tests, I found out that the nodule is not a regrowth. Deep relief! It is most likely scar tissue from radiation therapy. Needless to say, not knowing if cancer had returned, and wondering what our next steps would be if it had, was emotionally exhausting. I'll continue to get MRIs over the next few years - so unfortunately these scares aren't over, but I am of course thankful about the good news so far and the progress we've made since last year.

These past few weeks have reminded me how fragile my health really is. I write about how much better I'm doing, but the reality is that could change quickly. I have to live with cancer on a very real level each and every day of my life. The chance of recurrence is a true possibility and I must acknowledge that and be ready for it. So how does one prepare for cancer's return? The best way I've found is to accept that with the support of friends and family I can get through anything. When I told one friend I was frustrated about not having control over cancer, she responded that we have very little control over anything in life except our behavior. She had a good point and so I'm not going to cower from this disease, I will stand strong and believe in a bright future.

Speaking of my bright future, we are fully enjoying the joy of the holidays this year. Our house is decorated with Christmas cheer and little Alex loves pointing at ornaments on the tree and reading "Twas the Night Before Christmas" over and over again. I am appreciating my family and all that I have this season. Before anything else I am a mom and I love raising Alex. He's quite an impressive young man and I adore him. I also adore the other man in my life: Erin, who has been by my side every step of the way. I couldn't ask for a better partner.

This is my final blog and even if I can't simply wrap up this experience, I do want to say thank you. I am particularly thankful for my family over the past year. We have celebrated the good (clean MRIs, getting my physical strength back, hair growth), and muddled through the bad and the ugly (medulloblastoma diagnosis, radiation therapy, hairloss, nausea, fatigue, "small nodule" scare). We've cried, we've hugged, we've loved each other as only a family knows how to do. I can't express how much I appreciate the role each of my loved ones has played this past year. And to all my friends who have called, emailed, visited, cooked, sent cards, donated to my Relay team, I thank you sincerely for your support.

I look forward to staying in touch with all of you. Family and friends have gotten me through this year and I will continue to draw on your support through this journey.

love,

Sareana

2009-11-11T15:13:00.007-07:00

Halloween was a big success! Alex, in my biased opinion, was the cutest gorilla ever to roam Portland! Hard to believe we are now in the month of November with the holidays right around the corner. In fact, Thanksgiving this year will come early for our family. Erin typically works on holidays and Nicola and Dave will be back East this year with Dave's family so Lex and Ebby are coming to town for an early celebration.

The day before Thanksgiving last year was when we discovered my tumor, so I've promised my family a less eventful visit this year. As my year anniversary of being diagnosed with brain cancer approaches I have mixed emotions. On the one hand I'm thrilled with the progress I've made and the fact that I'm feeling pretty darn good overall, but on the other hand it's hard to believe the enormous amount of change that has taken place in my life. This time last year I would have never fathomed that the headaches I was experiencing would lead to a cancer diagnosis and all that has followed.

If you saw me walking down the street today you wouldn't have a clue that I'm a cancer survivor and you probably wouldn't believe it unless I showed you the scar on the back of my head. On the outside I'm the same, but on the inside I feel different. I no longer have the luxury of saying that I'm in good health. I am still a healthy person in the sense that I eat well, exercise and take care of myself, but my diagnosis has put me in a whole other health category for the rest of my life. I'll always be at risk for a recurrence of medulloblastoma or secondary cancers due to radiation such as breast cancer. And I'm expecting to go through menopause early as well as need thyroid and estrogen replacements at some point in my late 30s. This battle is far from over, but I'm in it for the long haul. I have too much to live for.

I met with my new neuro-oncologist recently, who happens to be a friend of my uncle, and I feel really good about having him as my doctor. He has a lot of experience with medulloblastoma, and I also appreciated his words of wisdom during our visit when he said to Erin and me: "Sareana, you take care of your baby and yourself. Erin, you fly those airplanes safely and I'll worry about your cancer."

Happy Thanksgiving! There's a lot to be thankful for.

Love,

Sareana

2009-10-10T13:37:00.007-07:00

I begin my blog this month with a heavy heart. Last Wednesday Erin and I found out that a good friend of ours, Rob, was diagnosed with stomach cancer. It was in an advanced stage and doctors wanted to begin radiation therapy right away. I spoke with him after his first session on Thursday. We talked about my experience with radiation (how to deal with nausea, fatigue, etc.) and tried to give him some perspective and encouragement. Over the weekend I texted him to ask how he was doing and his response was: "This is going to be hard, huh?" The next morning he collapsed due to a blood clot in his heart and died. Rob was 42 years old. As a former Marine he had tough skin, but when I spoke with Rob last Thursday that layer was gone and I heard the voice of a friend grappling with his own mortality. That sentiment resonated with me on a very real level. Unfortunately, cancer didn't give Rob the chance to fight back. He never got to tell his survival story. Godspeed my friend.

I had another quarterly MRI mid-September before we left Colorado. It was clean, yea! I am feeling good physically and staying fit just chasing after Alex. I have my uncle to thank for connecting me with a neuro-oncologist here in Portland. I will meet with him later this month and get him up to speed on my medical history, which is filling up the better part of a file cabinet at this point. My next MRI will be in December.

The Kelly Family arrived in Portland two weeks ago. We are so happy to be here and are getting settled into our new home. My dad helped us get out here by driving the big moving truck. I think he enjoyed his role as a trucker. Since then we've been busy unpacking boxes, getting acquainted with our new neighborhood, sharing meals with Nicola, Dave, and Spencer, and enjoying the fall weather. Alex seems to be transitioning nicely to his new surroundings. I'm always amazed at his adaptability and so thankful he's along for the ride.

Wishing you a Happy Halloween--Alex is going to be a gorilla! Ugha Ugha!

Love,

Sareana

2009-09-09T14:49:00.006-07:00

I am happy to share that Nicola and Dave had a beautiful baby boy, Spencer Yeats Wolman, in the early hours of August 10th! He is as cute as can be and Nicola and Dave are adjusting nicely into parenthood. After a 19-hour drive from Eagle, Erin, Alex and I arrived in Portland to meet the new addition to our family.

Once we were in Portland it was nice to settle in to my sister's friends' house, where we stayed for three weeks. Her friends were on vacation the entire time so it worked out nicely to be their housesitters. Part of the deal was that we take care of their dog, guinea pig and tarantula. Yes, tarantula! In addition to caring for pets, we also got out and saw a lot of the city. We went to the children's museum, zoo and visited lots of parks. In fact, we loved Portland so much we decided it would be a great place to live. So, we're moving there at the end of September! We'll rent a house for a year just to check things out, and then decide if we want to make it our permanent home. One of the many advantages of living in Portland is that Erin's commute to work will be shorter, which means he'll be home more often. He is based out of San Francisco. And of course we have the added plus of living near Nicola, Dave and Spencer. I think Alex and Spencer are going to be great buds! Erin can't wait to take them for their first airplane ride in the Piper J3 Cub, which has been in Erin's family for years and currently resides in Vancouver, Wa.

Needless to say, we are busy putting plans together for our move and once again have my parents to thank for their help. My sister and Dave have also been really helpful scouting out houses for us. We will miss Granduck and Ebs, but now they'll have more reasons than ever to visit the Northwest.

In the last few weeks brain cancer has gotten a lot of press from Ted Kennedy's passing. I pay close attention to cancer related issues in the news and feel a sense of sadness when I hear that someone else has lost their battle with cancer. I am also reminded of my own mortality. I'm reminded that if brain cancer had to come knocking at my door at least it was the treatable kind and that my prognosis is good. I'm reminded about how healthy I feel today and how happy I am that I'm in recovery. However, I also have quiet moments where I break down and cry tears of frustration and fear. As a cancer survivor, it's only natural to be afraid of the "what ifs." I can't wish away cancer, but I can look forward to a time when it doesn't have such a big presence in my life and only sits on the periphery as a reminder of how far I've come.

Love,

Sareana

2009-08-08T12:06:00.008-07:00

July was a busy month with a lot of activities from start to finish. In the beginning of the month I had a few lunch dates with friends from my flying days. The first was with Marie and her two kids. They drove up from Denver for the day and we had a picnic followed by a fun time at the park. I also had lunch with Jon and his beautiful pregnant wife, Christine. They were on their "babymoon" and made a pit-stop in Eagle for lunch. It is always good to see old friends and likewise I think it was good for them to see me and know that I'm doing well.

Mid-month I took part in my first support group through the Shaw Cancer Center, which was a really good time. It was an overnight hut trip with eight other survivors ranging in age from 32-65 and four staff. Part of our day was spent hiking among wildflowers galore. The other part was spent sharing how cancer has affected our lives and those around us. We all have different stories, we all had different diagnoses, and were treated at different ages, but one commonality we shared was our survivorship.

With all of my physical activities happening toward the end of the month, my Dad took on the role of being my trainer (a.k.a. Duck Carmichael). The goal was to be able to complete an 85-mile bike ride called the Colorado Eagle River Ride. My biggest challenge was to get myself in good enough shape to be able to spend a long time in the saddle. It helped to take frequent breaks to stretch my neck and shoulders, which are still super stiff from my surgery. And after six hours and fifteen minutes I completed the ride with my Dad and Erin! At times fatigue would weigh in, but I reminded myself that no amount of tiredness could compare to how I felt during radiation therapy. This was getting through it and it sure felt good when it was over! I collapsed into bed that night and woke up the next day to begin a week long kayak camp for young cancer survivors.

First Descents was definitely the highlight of my month. It was a week filled with outdoor activities: kayaking, rock climbing, and downhill mountain biking. It gave me the opportunity to concentrate on me, rejuvenate me. It wasn't about being a mom with cancer, hiding my bald spots, or even being identified by my name. It was about bonding with fifteen other young cancer survivors and pushing our limits. On the first night we all received nicknames; mine was Shark Bait. Yep, Shark Bait! Between the laughter and dancing in public I did learn how to kayak. I thoroughly enjoyed paddling down the river into rapids and repeating to myself "paddle, paddle, paddle, paddle, breathe" over and over again. One day mid-week we exchanged our kayak gear for rock climbing harnesses. Clinging to the rock and trying to convince myself that the rock was my friend, I realized that there is a strength within me that wasn't there before cancer. It was an amazing feeling to make it to the top and look down below at what I had just accomplished. I have been tested this year in ways that a young mom should never have to be, but I'm paddling through the rapids of life after cancer and I'm not just surviving, I'm thriving.

The Relay For Life was a nice event celebrating survivors, caregivers and those who have lost their battle with cancer. I wore a t-shirt with the word "survivor" written on the back and for the first time I was publicly acknowledged for being a cancer survivor. I'm proud of that. It was pretty special to be able to walk the first lap with Alex by my side. And thanks to many of you, the total amount of money that was donated on my behalf was $4,146.00. Just awesome!!

And the last bit of news to share is that my sister is due any day now. We are anxiously awaiting the phone call that her baby has arrived! Next week Erin, Alex and I will road trip to Portland for an extended visit. We can hardly wait for Alex to meet his new cousin!

Love,

Sareana

2009-07-06T20:19:00.007-07:00

My MRI last month was clean! Needless to say, I was extremely happy and relieved with this news. Even though I've been feeling healthy and there was no reason to believe the cancer had returned, it's still a relief to know that there are no signs of re-growth. My hair, on the other hand, is starting to grow, which is a welcome sight. It's far from being a full head of hair, but it's a good start.

I want to sincerely thank all of you who have donated to my Relay team. I am overwhelmed with your generosity, which elevated my fundraising status above and beyond my goal. As of today, we've raised $3791.00!!! If you'd like to check my progress just click here: Relay For Life.

Debbie, Erin's mom, and Bob came to visit for a few days in late June. It was great for them to see me with my energy restored and also see how much Alex has grown since their last visit. Alex's new fire truck, a gift from Debbie, offered lots of entertainment. Along with his rather intense interest in toy trucks, Alex has recently demonstrated what a stud he is, riding shotgun in our neighbor Sidney's motorized pink mustang. They make quite a pair!

My training is coming along for the three events that take place later this month: Relay For Life, Colorado-Eagle River Ride, and First Descents. Part of my preparation requires seeking out inspiration from other cancer survivors. I'm reading "Every Second Counts," which Lance Armstrong wrote in 2004. In it, he talks about survival and what cancer couldn't do: "It couldn't take away your spirituality, or your intelligence. It couldn't take away your love." I think this is an interesting perspective because after being diagnosed with cancer, there's a list of things that I feel like I lost. However, the most important things--the things that really matter--cancer couldn't and won't ever take away.

Love,

Sareana

2009-06-05T10:58:00.013-07:00

June 2nd marked the six-month anniversary of my brain surgery. What a milestone! It's hard to believe it's been that long since cancer became a daily part of my life. When I look at pictures prior to December of Alex, Erin and me, I get a little nostalgic. Nostalgia for the way life was. It seemed so simple. Before I was diagnosed with cancer, I used to pride myself on how healthy I was. Then all of a sudden I was faced with a serious chronic illness. That has been a huge adjustment. When I tell people now that I was diagnosed with brain cancer in December, and describe what I've been through, they look at me with disbelief. I still find it hard to believe myself sometimes. I don't look sick and I certainly don't feel sick. However, I know that cancer is elusive and I simply have to live with the uncertainty that it could come back. For now, I don't let that worry me and keep on keepin' on. As Alex advertises in the photo: Life is good!

One way that I'm keeping on is by setting ambitious goals. My body has been through a lot this year and I'm happy to report that it's bouncing back nicely. I think being young and athletic has its advantages. I've been on my road bike ticking off the miles, Alex and I travel all over together in his jogging/biking stroller, I see a trainer who specializes in working with cancer patients, and I practice yoga weekly. My hope is that by the end of July I will be one tough cancer chick, and ready for three upcoming events: 1) Relay For Life 2) Colorado Eagle River Ride and 3) First Descents.

You have already received an email from me about Relay For Life. In just a little over a day many of you have helped me reach my fundraising goal of $1000! And the contributions are still coming. Wow. I am blown away by your support, and look forward to seeing how much more money we can raise for cancer research. Thank you. I truly appreciate your support! The Colorado Eagle River Ride is a century ride that I've done in years past. It covers 100 miles of beautiful Colorado country. To be able to complete this ride would be quite an accomplishment. Both my dad and Erin will be riding with me. The last ambitious goal I have this summer has to do with a sport I know nothing about: kayaking. First Descents is a non-profit organization based out of Vail. It provides a six-day kayaking camp for young cancer survivors (ages 18-39) which "promotes emotional, psychological and physical healing." I am very excited about the opportunity to participate, and can hardly wait to start paddling.

I've had a few visitors this month. My sister and Dave came for a week-long visit. Spending time with them is always a plus and we can hardly wait to meet their new addition in August. Nicola is still growing and glowing. My other visitor was a good friend from high school, Mary. She came to see me all the way from Charlotte, NC. She treated me to a wonderful massage at a local spa. It was so relaxing that I'm certain I left with Alicia (my wig) on sideways. It was great to spend quality time with a friend that I don't get to see too often.

I mentioned in my last blog that I was going to Denver to visit with a neuro-oncologist at the Children's Hospital. The meeting was useful and I learned more about why chemotherapy isn't recommended for me. There is very little conclusive evidence regarding adults with medulloblastoma and the appropriate treatment, which means each case is unique. Later this month I have an MRI scheduled, as well as a follow-up with my oncologist to check on things.

Thank you again for your endless support.

Love,

Sareana

Guest Blogger Series Part V!

2009-05-24T18:36:00.011-07:00

Dear Fellow Members of the Elect Sareana Kelly Sister of the Millennium Action Committee:

Greetings from the campaign trail! First, a quick update from Sareana's recent whistle stop at Back Bowl bowling lanes in Eagle, Colorado. While there, your candidate charmed the staff, maintained her casual-yet-snazzy fashion sense while wearing previously worn dual-colored shoes, threw one strike after another (OK, maybe just a few), and gracefully prohibited budding bowler Alex from crawling down the lane toward those appetizing pins. It was a successful visit, despite husband Erin's lackluster score. (Note to careful readers: Coincidentally, Sareana's sister's belly now looks much like a bowling ball.)

On the subject of that super-lucky bowling ball, a.k.a. BabyDog, I, your faithful Campaign Committee coffee gopher and fire-breathing critic of the Kelly family's favorite television shows, would like to share some thoughts about parenthood, or more specifically: 9.5 things about being a good parent that I've learned from Sareana and Erin this year:

1. Keep drool cloth handy.

2. Blend foods and plan menus months in advance. And write them down. In fact, write everything down.

3. Shower offspring with love, kisses and song. (This one is a bit problematic for us. Tone deafness issues--I'll tell you some other time.)

4. Abandon the kid in crib with books at nap time. Technically, this tip is from Sareana's dear friend Holly, but let's not split hairs; I'm sure Holly learned it from someone.)

5. Keep baby's nasal passages clear, even if s/he squawks about it. This rolled-tissue maneuver is also know as the "alpha strike."

6. There is simply no substitute for the healing power of your baby. (Or at least baby Alex, but we presume this rule applies across the board.)

7. Cool uncles are a godsend.

8. Sleep begets sleep.

9. When it comes to the energy required to care for children, Erin and Sareana have shown me that it pours from a magic and infinite reservoir.

9.5 Silly Billy!

Love you guys,

2009-05-13T10:52:00.010-07:00

Alex's first birthday party was a big success, complete with a "#1" pinata! We had a great time at a local park with new friends and neighbors. Alex had his first taste of a carrot cupcake, but he seemed to like the cream cheese frosting the best!

The local paper also featured a picture of Alex in the Town Talk section looking very happy to be a year old! Thanks to Ebs and Granduck who helped make his first birthday so special. Granduck was even giving rides in an Aero Flyer wagon that belonged to my mom when she was a little girl.

Love,

Sareana

2009-05-04T09:07:00.000-07:00

April started out a little rough, but it turned out to be a very good month. I was experiencing a lot of change at once, coupled with a move to higher altitude, which could have played a role in my headaches, dizziness and overall fatigue. Fortunately, my most recent MRI (early April) showed that there was still no tumor re-growth, and likewise no swelling, which is something else we had been concerned about. (The doctor's technical assessment of my MRI was that "there's nothing in there," a statement my dad now likes to use whenever I'm sounding a little smart.) The doctor prescribed a low-dose steroid, which has really helped alleviate my headaches and increase my energy level. I'm also eating and sleeping better, and I have started exercising again (yoga, walking, biking). Sweating and hearing my heartbeat makes me feel alive.

We are lucky that there is an excellent cancer center located in Edwards, Colo., not far from where we live. The doctors and resources there have been extremely helpful so far. In May I will go down to Devner to meet with a neuro-oncologist at Children's Hospital who knows a lot about medulloblastoma. The idea is that since my tumor type is more common in children, it would be best to seek input from a pediatric specialist and discuss any further testing that might be necessary.

My next MRI is scheduled for June. I will have one every three months for the first year after surgery, then every six months, then once a year. After a few years, they'll be less frequent still. I like the idea of frequent MRIs, for the time being, because they are key for early detection of a recurrence. We are most concerned about that possibility in the first three years after surgery.

Secondary cancers and recurrence are topics we've discussed with doctors. Obviously, no one can predict my future health status, so I've just got to do everything I can to maintain a healthy lifestyle. This translates into eating well, exercising, keeping a good attitude, and being proactive about my health. Here's how I see it: I could spend all my time worrying about the future, or I can choose to forge ahead and live my life. I'm choosing to move. Forward.

My hair, or lack thereof, is a topic that's been on my mind a lot. I look at other peoples' hair and think how nice it must be to look in the mirror and see a full head of hair. To be able to wash, dry, or comb it, to get a haircut, tuck it behind your ear or pull it back in a ponytail--I always took all of that for granted. One truth I have to face is that, because I had radiation to my head, my hair will never grow back to what it was. Hmmm, never. What a tough reality to accept for a girl who always had thick, long brown hair. I won't know for several more months whether my hair will grow back and, if so, how thin. (It takes a long time for hair follicles to restore themselves after such abuse.) Meanwhile, I occasionally wear my wig--code name: Alicia. She provides anonymity in public, and I simply need that sometimes. Headscarves often call out "cancer" and all that comes with that, which can be hard.

About Alex: He is doing just great! He's crawling up a storm and on the verge of walking. My parents have been instrumental in his daily care, giving him all the love he needs and good food to help him grow. His first birthday is fast approaching, and we are so excited to make his first cupcakes. We invited some other little friends we've made to a nearby park to celebrate. What a first year of life for my little boy! I've worked hard to try and document much of what has taken place this year, so that in the future he will always know what a special, healing role he has played in my life generally, and especially during the difficult times. Without Alex by my side, my experience with cancer would have been much tougher than it already was. He is a daily reminder of why I'm still fighting to feel better by the day, and I want to do everything I can to watch him grow up. I'll post a few pics of his birthday celebration mid-month.

A brief word about Erin's dad, Buck Kelly, who passed away in 1990. In April, Buck was inducted into the Banjo Hall of Fame in Oklahoma City. Erin's mom, Debbie, her husband, Bob, and Erin's sister, Molly were all there to celebrate this special event and pay tribute to Buck's amazing musical accomplishments. I hope Alex has the same musical talent as his granddad!

One last piece of important news: we sold our house in Phoenix!! Our first home didn't turn out to be the investment we thought it would, but it provided comfort and was a place where we made great memories that will last forever. And now we can look ahead to a fresh start. Forward!

Love,

Sareana

P.S. Look for a guest-blog entry from my brother-in-law, Dave, later this month.

2009-04-05T14:21:00.000-07:00

Greetings from snowy Colorado! We have been busy the past few weeks packing and unpacking. We couldn't have done it without the help of my Dad, Mom, Dave, sister and of course, Alex. Thanks also to our Phoenix friends who gave a lending hand. The move has been exhausting, but we're glad to be here especially ahead of several recent snow storms.

I may have said this before, but it's worth saying again. The past four months feel like a blur. My diagnosis and treatment for brain cancer happened very quickly. It seems like yesterday that I was juggling life as a new mom, a job, spending time with Erin, and finding time for myself. I have a new, bigger task now - healing.

There is a lot that I am still trying to comprehend and move forward with. Now that I've finished the treatment process, I wish this journey through brain cancer could just be over. Done. Finished. I'm learning, though, that cancer is not something that I can now simply erase from my mind. I need to come to terms with what has happened, and how to move forward with this new aspect of my life. These are my next steps. As someone told me recently, I have to get through it in order to get through it.

I'm planning to update my blog at the beginning of each month until the anniversary of my surgery - December 2nd. I truly appreciate the support and caring thoughts that I've received from all of you through my journey thus far. I'll be in touch again in early May and send out my new contact information soon via email.

Love,

Sareana

2009-03-18T09:00:00.006-07:00

It was certainly a Happy St. Patrick's Day yesterday. So that you don't have to read any further to find out the nitty gritty: no regrowth = no chemotherapy!!! Yippee! Yahoo! Woo Hoo! Yee Haw! Hip Hip Hooray! These are just some of the emotions I'm feeling right now.

Yesterday was one of the more exhausting days that Erin and I have had in a while. I woke up feeling a little anxious, but weeding the yard helped keep my mind off of trailing thoughts. My MRI was scheduled for 1:30pm. It was strange being back at the hospital and lying down on the MRI table. It brought back familiar and uncomfortable feelings, but I thought I didn't do all that radiation for nothing so let's see what we got. After the MRI, we had about 45 minutes before my appointment with the neuro oncologist so we sat outside the hospital waiting. Waiting and hospitals seem to go hand in hand. The weather this time of year in Phoenix is gorgeous and it was nice sitting outside with Erin and watching Alex nap peacefully. We all had a calm about us.

The neuro oncologist was running behind schedule so after waiting an hour we finally got in to see him. We were sitting in front of two computer screens comparing my MRI post-surgery and the one from yesterday. I felt like there should have been some sort of drumroll before letting us know what the MRI revealed, but instead he started talking about gobbledy gook that went in one ear and out the other. Eventually he made it clear that there was no regrowth. Wonderful!

The final recommendation at the end of our appointment was not to proceed with chemotherapy. That was music to my ears. That's all I needed to hear. I can finally take a deep breath and thank my lucky stars that I can consider this and each day forward a healing day. I felt so good last night I even performed my first cartwheel for Alex. Today I think I'll run a mile!

Love,

Sareana

2009-03-14T10:38:00.000-07:00

Despite Alex's initial skepticism (see photo), there have been some exciting new developments around here. The first is growing in my sister's belly. Nicola is pregnant! The truth is that we found out she was pregnant a few days before we found out I had a brain tumor. For the family, emotions sure ran the gamut during Thanksgiving 2008. Nicola is doing well, although at times over the past three months we made quite a pathetic pair! Needless to say, we are all very excited about the new addition to our family, due in early August. Congratulations Nicola and Dave!

Another exciting development is that in a few weeks the Kelly Family is moving to Colorado. And not just anywhere; we're moving in with my parents! Isn't it every man's dream to live with his in-laws? In all seriousness, we are looking forward to living with my parents, albeit temporarily. Under the circumstances, moving to Colorado is the best solution to ensure I have all the help I need when Erin is away. My parents have been so kind and generous to open their doors; it will be a lot of fun spending time with them in their awesome house, cooking meals, and going for walks and bike rides in picturesque Eagle, Colorado. Plus Alex will certainly love being around his grandparents and getting all of their love and support. Erin and I are very happy to return to a state we both like to call home.

Love,

Sareana

2009-03-10T10:20:00.003-07:00

{The guest-blogger series continues with an entry from Lex,

Sareana's dad.}

Ebby and I arrived in Phoenix the Sunday before Thanksgiving to join our girls and their husbands for the Holiday week. The familiar two day drive from our home in Colorado had been leisurely. We spent Saturday night in Mexican Hat, Utah and listened to audio books to pass the time in the car. On Monday Sareana went to work while the rest of us gathered supplies and made preparations for the Thanksgiving feast. (Our celebration was planned for Tuesday, since Erin would be at work on Thanksgiving Day).

Sareana had been complaining of troubling headaches and soreness in her neck for about a month. On Wednesday, with the holiday weekend approaching and Sareana's pain becoming more acute she went to the doctor to have it checked out. The doctor, a woman in her forties, recommended Sareana have an MRI and was able to schedule one for that evening. She reassured Sareana that this was only a precautionary measure to begin eliminating possible causes. Sareana later found out that the doctor had had similar symptoms a few years earlier that turned out to be a brain tumor that was successfully removed. A fortunate coincidence that we are very thankful for.

Thanksgiving morning 2009 our world changed. We sat in Sareana and Erin's living room staring at each other in disbelief. Our family has been blessed with extraordinarily good health over the years, so the possibility of something like a brain tumor never entered our minds. And yet there on the coffee table was the grainy MRI film obtained the previous evening that showed a golf-ball-size mass at the base of Sareana's brain. We knew this was bad and we were scared.

Some of you have been down this road, so you know that a cancer diagnosis is filled with uncertainty. Your days are spent dealing with new and sometimes conflicting information. Frustration, anger, fear, and fatigue are your daily companions. You draw strength from each other. We are now three and a half months into it and this is what I have observed about my family.

Sareana and Nicola have always been close. Ebby and I know that isn't always the case with siblings, so watching them support each other over the years has been a pleasure. Both have developed careers and matured into productive young women. Sareana's diagnosis has brought them even closer. When they are together there is a calm and a purposefulness that envelopes them. They draw energy from the other, making them stronger together than apart. My girls are truly sisters.

Picking a partner for life is a chancy business at best, but somehow both of these girls nailed it. Watching Erin and Sareana mature as a couple, rise to the challenges of parenthood, and now deal with this turn of events is amazing. Relationships get tested from time to time, but thankfully most of us will never experience a test like this. Erin never stepped back for a moment; he is there for her. Rean could not have found a better mate; nor we a better son-in-law.

Nicola's husband Dave plays a supporting role. In quiet moments I see Dave holding Nicola, giving a quick shoulder massage or foot rub, and I know that she is drawing the strength and comfort that she needs. She has found a life partner, too.

After 38 years I think I know Ebby pretty well, but she never ceases to amaze me. She instantly stepped into the role of caregiver-in-chief for Alex. When Sareana walked out the door to go to the hospital, Alex was not only separated from his Mom, but also his primary food source. Ebby quickly determined his formula needs, continued making home cooked baby food, and showered him with love - he never missed a beat. He's still partial to his Mom (as he should be), but there is a special bond between little Alex and Ebs that will be there forever.

And Alex. He is the best anticancer weapon ever conceived -- and he doesn't even know it. He is so even tempered and good natured. It's as if he knows he has a job, too: to be there for his mom. I am proud of him, and I am proud of my family -- especially my girls. We're all supporting and comforting one another, building strength, and figuring things out.

-Lex

2009-03-05T18:30:00.006-07:00

Back in December, nothing seemed clear with regard to my situation. I remember sitting on the couch with Erin my first night home from the hospital, locked in a teary embrace. We had so many questions and felt so unsure of what lay ahead.

As more time passes, things have become clearer. The most important of which is that without the help of family and friends, we would not be functioning nearly as well as we are. In February, I had two friends each take a week out of their hectic schedules to lend me their support in Phoenix. The first visitor was Corina. I know Corina from my camping days in Colorado, so we go way back. She lives in Crested Butte, CO and has four jobs, plus she's taking classes to pursue her dream of becoming a naturopathic doctor. Aside from giving Alex lots of love and attention, her mission while she was here was to get me eating organic foods, especially fruits and vegetables. It seemed like my personal dietitian had suddenly flown in to town. Little did she realize that my palate was all about plain and bland. Now that I'm recovering from radiation, I can better appreciate her efforts, and have been slowly introducing more "superfoods." Her visit was such a welcome breath of fresh air and so appreciated!

Holly, my second visitor, was my roommate during my time abroad in Florence, Italy. Holly lives in New York City and has two girls, Libby and Cacie. Libby is two and a half and Cacie is 7 months old. Holly works full-time, so needless to say she is a busy woman. Somehow, though, she managed to "drop off" her two girls for a week in Nashville with their grandparents, so that she could come to Phoenix. Fortunately, I was on the mend while she was here. We even snuck in an afternoon at a spa, which was delightful! Holly was also such a natural with Alex and gave me some great mothering tips.

I can't thank Corina and Holly enough for their time, constant support and encouragement. The sacrifices they made to be here for me are innumerable. Their presence has also reminded me of what a wonderful network of friends that I have. Everyone's support, whether long-distance or in person, has meant a lot to me.

A childhood friend of mine wrote an article, which mentioned me and my blog in the LA Times this week. Thought you might find it interesting.

http://www.latimes.com/features/health/la-he-myturn2-2009mar02,0,7074554.story

Love,

Sareana

2009-02-26T19:40:00.002-07:00

What a difference a week makes! I have regained my appetite slowly but surely. I also have more energy and just feel better all around. I can only hope as the days and weeks pass that I continue to feel better and better.

In late December, Erin and I met with my oncologist, who outlined the initial treatment plan: six weeks of craniospinal radiation, followed by a six-week break, then 8 three-week cycles of chemotherapy. Until a couple of days ago, we were under the impression that this was the plan, period.

But this week Erin and I met with my neuro-oncologist for a follow-up visit, now that I'm done with radiation. We both felt like this was an extremely useful meeting. First of all, we learned that the doctor would like to study my post-radiation MRI before making a final decision about what type chemotherapy, if any, is needed and what dosage. What they're looking for in the MRI is very straightforward; either there is regrowth of the tumor or there isn't.

If they detect regrowth, the course of action is a no brainer (no pun intended)--I will need chemotherapy. Again, what kind of chemo and for how long are yet to be determined. No new growth is obviously what we're hoping for, but if that's the case the best course for treatment isn't clear-cut because of the type of tumor I have and the fact that it's rarer in adults. The best guess at this point is that the doctors will recommend chemo, to be on the conservative side, even if the MRI reveals no evidence of tumor regrowth. But we will have to wait and see. The MRI has to happen a month after radiation ends, so the big day is March 17. Looks like St. Patrick's Day is going to be a bigger day this year than usual for the Kelly Family. A week or so after the MRI, we should have more definitive info from the doctors.

For now, though, it's time to relax, spend some fun time with Alex and Erin, and enjoy the fact that I'm feeling better by the day.

Love,

Sareana

2009-02-22T14:30:00.002-07:00

{Guest blogger series continues with a note from Sareana's husband, Erin.}

Under the circumstances, I think we're all doing pretty well, thanks in no small part to the tremendous help we've been getting from family. Sareana and I have always worked well together. Always, and on everything. When Alex was approaching six months old, just before all of this happened, I felt like we were hitting our stride as new parents. We were really getting to know the little man, while figuring out how to have time for him, ourselves, our jobs and each other. It was one of the more exciting times in life, which made the abrupt interruption that much more difficult.

It's a hell of a thing to spend 10 days at the hospital while your wife undergoes brain surgery. It was only during the actual surgery that we found out the tumor was malignant. That meant I had to tell Sareana once she had regained consciousness after surgery. That's also a hell of thing to have to do. This is all pretty heavy sometimes. However, as the days have turned into weeks and the weeks into months, the everyday tasks that need to be done now and in the near future become clearer. I think Sareana and I are strong enough to carry the weight. She's a magnificent woman; I never knew quite how tough she is. She's unimaginably tough.

When Sareana first checked in to the hospital, it was overwhelming in a lot of ways. Seeing my wife suffer is not easy. But for both of us, one of the toughest parts of that time was giving up the autonomy of total responsibility for Alex. It was a bit of a wrestling match with my conscience at first: although I needed to be at the hospital with Sareana, Alex had been the central focus of both of our lives for six months, and it didn't feel right that he was suddenly on the periphery. I gradually came to terms with not being able to be in two places at once, and Sareana's mom, Ebby, seamlessly took on the role of Alex's chief caregiver. Apparently it was a lot harder on us than it was on Alex. He instantly and happily took to the change in circumstances. Since that time, we've almost always had at least one family member around, and I think that's been the best possible thing for Alex. He has already developed strong relationships with his grandparents and aunts and uncle, and is always loved and looked after. And it shows: He is one happy baby, although still partial to his mom.

Also, a huge thanks to Lex, Ebby, Nicola, Dave, Debbie, Bob, Molly and Bill, who have all been here in various iterations to help or stepped up at home so someone else could be here with us. I can't imagine going through this without them. As for Sareana, it's hard to find the words that do justice to her strength, poise and character. With or without the situation we're dealing with, I just don't think it's possible that I could have a better partner or that Alex could have a better mom.

2009-02-19T14:40:00.004-07:00

Done, done, and done!!! After my last treatment today I received a graduation certificate. Not sure I'll add this to my resume, but knowing radiation is officially over sure is a sweet accomplishment.

The last several months have been arduous to say the least. I'm proud to say that since December, I have persevered through brain surgery, a spinal tap and six weeks of radiation to my head and spine. And all the while I have a baby at home who needs his mama. Phew, no wonder I'm exhausted!

Traveling down the highway to the hospital each day for my radiation treatment, I passed a billboard that spoke to me in big bold letters: CANCER HAS A NEW ENEMY. On every trip, I'd point to it and say my name aloud. Garnering energy from such things is one method I use to stay strong. Another is through all of your words and thoughts of encouragement. Thank you for continuing to support me and my family through this journey with your emails, phone calls, texts, letters, care packages, homemade meals and prayers. I feel very loved.

Needless to say, I'm thrilled that radiation is over, and I'm looking forward to a six week break before chemotherapy begins. I hope during that time I will find a renewed energy--and appetite--so that I can continue this fight.

Here's a brief, non-technical assessment of how I have fared through radiation:

Hair: not all is lost; I now have a really nice comb-over

Skin: parts of my head and neck are irritated; healing with time

Nausea: comes and goes; getting better everyday

Appetite: unbelievably low, but that can't last forever

Weight: back to pre-pregnancy size; not a recommended weight-loss program

Spirit: intact

So there you have it. I'm still Sareana after 30 down and 0 to go!

Love,

Sareana

2009-02-15T10:57:00.009-07:00

{Continuing with the guest blogger series, here is an entry from Sareana's sister, Nicola.}

A few days after Sareana's surgery, our family had a picnic lunch in a garden outside of St. Joseph's hospital. Sareana talked abut how life had changed--life had changed in a very hard way. Just 10 days prior, the two of us had hiked the upper loop of the "Desert Classic," a favorite nearby trail. Sareana had mentioned nighttime headaches.

Brain cancer was, and still is, unimaginable. As we sat outside St. Joseph's, what I remember most about the pain of absorbing the changes that had come, are Sareana's words: "I'm still Sareana." There's a new reality for her, for all of us, but I am reassured whenever I see her, hear her voice, read her blog, or get a text message--she is still Sareana.

It's hard to describe exactly what that means. Perhaps it is her joking with baby Alex the other day that he shouldn't be self conscious about getting on the scale at the pediatrician's office; or maybe it's her detailed directions for me on how to drive home from the airport, knowing the turns that will confuse me; or perhaps the practical nature and diligence with which she faces radiation every day and helps us all count down the days; or the caring way she keeps everyone informed on her blog; or the way she was so proud of me when I helped advocate on her behalf at the hospital.

Life has changed. It always does. But this time it changed in a way that seems unfair, undeserved, unimaginable, unkind. I keep my heart on the faith that Sareana is still Sareana, and that her core will guide her and all of us through the treatment this year, and the changes that are happening. I believe for Sareana in a fortune told by a fortune cookie she opened about a month ago: The best part of your life is just beginning.

2009-02-12T00:51:00.000-07:00

Erin went to back to work this month, which is a big transition for both of us. He was able to take quite a bit of time off thanks to his employer. When I met Erin 8 years ago he was working for a small commuter airline in Denver and I was in flight school working on my instrument rating. In 2004, after we were married, he got a job with America West Airlines (now USAirways), which is based in Phoenix. We decided to move to the southwest in search of adventure. Almost five years later, a lot has changed for both of us professionally. In 2007, Erin got a job with another airline based out of San Francisco--Virgin America--where he is now a captain.

After moving to Phoenix, I grappled with the decision to either continue as a flight instructor and follow a path to become a professional pilot or to do something different. I chose the latter and was accepted into the Teach For America program in Phoenix. For two years I was a fourth-grade teacher in a low-performing school. At the same time, I took classes to earn my teaching certificate. It was both a challenging and rewarding experience.

In 2007 I got a job at a private school where I taught fourth grade while I was pregnant with Alex. This school year I was working part-time in the administrative office. The flexible schedule worked out nicely, allowing me to spend a lot of time with Alex and with Erin when he was home from trips.

Then in late October, I started having unexplainable nighttime headaches. That, of course, led to surgery and a diagnosis of cancer.

Having Erin home every night for two months is something I've never known before. His profession creates a natural independence between husband and wife because when he's gone, he's gone. And when he's home, he's home. Needless to say, these past two months have not been a vacation for us, but there is an upside to all this time we've had together. Erin and Alex have created such a strong father-son bond already. Alex adores his grandparents, aunts, and uncles. And I get to spend quality time every day with my boy. Erin's transition back to work will bring some normalcy back to our lives. I will miss him more than ever when he's gone, but I wouldn't have it any other way.

Love,

Sareana

p.s. The radiation countdown is looking good: 25 down, 5 to go!

2009-02-08T11:31:00.009-07:00

{Introducing the Notes from Sareana guest blogger series, offering a family's perspective. Here's a note from Erin's mom, Debbie, and her husband, Bob.}

Our visit to see "the kids" was great. We were thrilled that we could take care of Alex during Sareana's treatments and at other times in the day, and prepare meals for everyone, although Sareana's double-baked potatoes, rice, soup and crackers aren't really "meals." We also did a little cleaning and a few home repairs, before slipping out the door before dinnertime so that the two of them could have some much-needed space and quiet time.

Sareana has no appetite and very little energy, and we were taken aback by how little she can do compared to her normal self, yet she never complains. Her spirit and sense of humor are fantastic, and her determination to get through this ordeal is awesome.

It was also impressive to watch how Sareana and Erin made their days as normal as possible--giving Alex his bath, playing together, doing the laundry, snuggling up for a movie, Erin taking a quick bike ride, etc. They are such a cute couple, and it was fun to watch Erin dote over Sareana, making certain she has every comfort at every minute. Even if he is my son, I have to say he's quite a "rock" and truly a loving husband and father.

Meanwhile, Alex is a perfect delight and such an easy baby to take care of. It was wonderful to see how he lights up their lives. He practically leapt out of our arms each time Sareana and Erin came through the door after returning from treatment. And even though Sareana was dragging, that little guy seemed to melt all her cares away as soon as they were together.

For the two of us, being in Arizona helped relieve some of our worries, just by seeing first-hand how Sareana, Erin and Alex are doing. The diagnosis, surgery, doctor appointments and treatments are a lot to bear. It's a long way to the end of all the treatments, but we now know how very strong Sareana and Erin are, and that they're making this journey with spirit and tough determination. They'll hang in there, and we hope they'll remember to find humor in the little oddities that will come their way during this "endurance test."

We love you very much!

Debbie/Mom/Grams & Bob/GrandBob

2009-02-05T14:02:00.000-07:00

I reached a major milestone in my radiation treatment today. My 30-day regimen is divided into two parts: 1) 20 treatments to my head and spine and 2) 10 treatments to my head only. I have now completed 20 treatments to the craniospinal region. During each session, I laid on my stomach and had a plastic mask locked over my head and shoulders so that I couldn't move. No small task!

Tomorrow begins the final 10 sessions, which the doctors call a "boost" to the "tumor bed," the area of my brain where the tumor grew. For this treatment, I will lie on my back, so the technicians made me a new mask (similar to the previous one, only this one goes over my face). Typically patients find this position more comfortable; however, I haven't been able to lie on my back since my surgery because the incision area is so numb and tender, so we'll see how it goes for me. Since the area they are treating is smaller, I'm hoping that some of my side effects (namely nausea and skin irritation) will diminish, although I don't expect them to disappear. The doctor has told me that radiation has a cumulative effect, so I shouldn't expect to feel "normal" until several weeks after treatment has ended. Nevertheless, February 19th is going to be a day to celebrate whether I'm feeling like a party or not!

Love,

Sareana with 20 down, 10 to go

2009-02-02T07:08:00.002-07:00

Last week was a big week. Not only did I hit the halfway point for radiation sessions (16 down, 14 to go), but I was also kindly reminded by my friends at the school where I work of my half birthday! Did you know those really exist? Each fourth grader even made me a card complete with words of wisdom about how to celebrate. I thought I'd share this one in case you were wondering how to plan a half birthday party for the kid in you:

Dear Mrs. Kelly,

Now I know grown-ups don't celebrate half birthdays, but kids love to! Here are some ways I would celebrate a half birthday.

1) Tell some friends you want a half birthday party.

2) Give them supplies for the party (streamers, balloons, etc.)

3) Wait. Do something until they call you.

4) Go and party!

Love, J

I think you would agree--children tend to give the best advice in the world!

Love,

Sareana

2009-01-31T06:32:00.000-07:00

It's times like these when the importance of family truly reveals itself. Both my family and Erin's family have played an instrumental role in taking care of me, Erin and Alex since day one. My parents, Ebby and Lex, and my sister Nicola and her husband, Dave, were all visiting for Thanksgiving when I received my diagnosis. My parents live in Eagle, Colorado and Nicola and Dave live in Portland, Oregon. They quickly figured out that staying in the hotel down the street wasn't going to work long-term, so they found a cozy two-bedroom apartment on Craigslist that is a ten minute walk from my house. They rented it through February when my radiation treatment will end. While in the hospital, they brought Alex to see me daily, read to me, packed great picnics and offered Erin a much-needed reprieve from ICU. This was my second hospital experience; the first was when Alex was born six and a half months prior.

My uncle, Dr. CW Pinson, has also played a critical role in my care from afar. He is the Chief Medical Officer at Vanderbilt University Hospital and consulted with numerous colleagues to ensure that I was receiving the best care and post-surgery treatment. He has also been a valuable contact for medical-related questions and overall love and support.

In December, we took a look at the calendar through February and plotted out a schedule for back-to-back visits from my family and Erin's family. With radiation treatments Monday-Friday, it is important that someone is here to care for Alex and that someone can take me to my appointments. So far, the schedule has worked out nicely and we're so grateful for the sacrifices both of our families have made to be here for us.

Erin's mom, Debbie, and her husband, Bob, were here for ten days from Livingston, TX. During that time Erin's sister, Molly, was able to leave her three young children with their dad in Chicago and come for a quick visit. I know how much it has meant to Erin and me to have their support as well. Not only are they great with Alex, but they are also home-improvement experts! While they were here, it was clear that Erin needed to see them as much as I needed to see my family. As husband, father and primary caregiver, he has a lot of weight on his shoulders and he's handling it in stride.

Unfortunately, cancer is no stranger to Erin's family. When Erin was 14 his dad, Buck Kelly, passed away from kidney cancer. If only cancer had granted our family a pass. Alas, that's not how these things work.

Love,

Sareana

2009-01-26T07:48:00.002-07:00

It's Monday, which means I've got five days of radiation ahead of me. The weekend allows me to rest up a bit, but unfortunately the side effects don't go away. My throat is extremely tender making it difficult to swallow and even talk. I've had significant hair loss in the past two days and my scalp and forehead are irritated and itchy. Oh, let's not forget about the nausea and fatigue, too. They weren't kidding when they said that radiation would take it out of me...but it can't take my spirit! 11 down, 19 to go.

Alex provides so much love and laughter that he can do more for me than any prescription. He's got the greatest 4-tooth smile (two on top, two on bottom) and has such a nice disposition. He's been so good about having people around all the time. He's not yet crawling although we're almost there and he's babbling up a storm. He continues to be a food aficionado and won't turn down anything. I took Alex on a walk around the park yesterday, he fell asleep soundly and just for a moment I felt normal again.

Love,

Sareana

2009-01-20T10:06:00.001-07:00

I know that a lot of people who care about me are reading my blog and I sincerely appreciate your moral support. I think it's important to convey in my notes the truth about my experience. This is an unbelievably tough situation to be in and some days are better than others. Thankfully, I've always been a positive person and I won't let cancer change that.

Erin and Alex help me keep things in perspective. In the morning it's just Alex and me for a few hours after he wakes, and these are moments I cherish. He is a true gift and fills me with strength and love. Erin offers constant stability and guidance. My boys and I are going to be OK.

It's amazing what a difference three days without radiation has made. My body has had time to recuperate over the weekend and gear up for the week ahead. So here we go...

Love,

Sareana

2009-01-17T10:19:00.000-07:00

The waiting room in an oncology office is one of the most difficult places to be. I've never felt so out of place, even though it's exactly where I belong under the circumstances. I look around and see people with gray hair or no hair at all. I see pamphlets for support groups, books about cancer and brochures for wigs ("hair prosthesis" in the medical world). I know I'm where I need to be to get better, but all I really want to do is run out the door as fast as I can and scream. I want my life back.

After seven sessions of radiation I can honestly say it sucks. I am nauseous everyday all day despite the medications. The food I eat looks similar to Alex's. A walk around the block is exhausting and I feel emotionally drained. I know there's an end in sight; it's just that some days it seems so far away. Nevertheless I'm still keeping a close tally: 7 down, 23 to go.

The doctor asked me a question recently that was difficult to answer: "Are you prepared to lose all of your hair?" Yes and no. I'm fully aware that my hair will fall out due to radiation and chemotherapy, so I get that it's part of the process. However, I'm not prepared to look at a bald Sareana in the mirror. I know I'll get used to it, but it's still hard to imagine.

Love,

Sareana

2009-01-11T18:00:00.004-07:00

Getting ready for my first radiation therapy session was quite an extensive process. I had two "simulations" during which the technicians and the doctor got everything in order to ensure that I will be in the exact same position for each treatment. This requires a hi-tech radiation machine, a table they lock you to, a plastic mold and a few tattoos. First, they made a plastic mold of the back of my head and shoulders while I was lying face down on a table. The mold, which has air holes, is then locked securely to the table. This keeps my head from moving even a little--definitely not for the claustrophobes! Multiple x-rays were then taken of my spine to define what is called "the treatment field," which is basically the area they plan to radiate.

Once they had everything lined up perfectly they made tiny, permanent tattoos the size of a freckle in four spots on my back as position points. (Erin thinks we should expand upon the tattoos to create a two-headed dragon on my back, but that's not going to happen.) Each fitting session took approximately an hour. It's not an easy task to be strapped to the table for that long, face down no less, but lots of meditative thoughts helped me get through it. From now on, the sessions should only take about 15-20 minutes each time. The majority of that time is spent aligning my body; just minutes are spent on the actual radiation. There's music playing in the background to help me zone out, but generally I close my eyes and think about things that are calming.

Nausea is, unfortunately, a common side effect of radiation treatment, and I was feeling nauseous for some of the weekend. The doctor prescribed some good medicine, though, which already seems to be working. The good news is that the countdown is on: 2 down, 28 to go!

Love,

Sareana

2009-01-06T14:31:00.000-07:00

The last several weeks have been a blur of doctors' appointments and phone calls. It took this long for all the information to come together (spinal tap, MRIs, x-rays, and other post-surgery data) and for a multitude of doctors to then come up with a finalized treatment plan for me. Pathology of the tumor revealed that it was a "medulloblastoma," a common form of childhood brain cancer, but one that is rarely found in adults.

So, here's the plan: Starting Thursday, I will begin six weeks of radiation to both my spine and head. Following radiation I will have a six week break before beginning chemotherapy for eight months (April-November). My initial reaction was one of disbelief at the time span for chemotherapy. It's one thing to gear myself up for six weeks of radiation and another to prepare for almost a year of treatment. However, I am confident that this aggressive approach to treating my cancer will keep it at bay for a long time and hopefully get rid of it all together. While I am not looking forward to the myriad of side effects from the treatments, I'm staying positive because the longer-term outlook is good.

Looking down the road, my doctors all say that, although my prognosis is not a "walk in the park," it is also far from the other end of the spectrum. Following chemotherapy I will have MRIs every three months to ensure that the cancer has not returned. The more time that passes, the less chance of recurrence. I'm hopeful that will be the case.

Love,

Sareana

2009-01-03T15:15:00.003-07:00

Erin and I took a whirlwind trip to Las Vegas this weekend. Fun! Before radiation begins we figured we should take advantage of my sister and brother-in-law's offer to take care of Alex while we jet off to Sin City. Unfortunately, we didn't win big money, but we sure had a lot of fun trying. On the way to the airport leaving Vegas the taxi driver asked us if we were ready to return to reality. What a loaded question for me as I rarely feel as though this is my reality these days. In any case, we were both happy to go home and see our boy!

Love,

Sareana

2008-12-30T07:40:00.004-07:00

I received some good news yesterday. My spinal tap came back negative, which means the cancer did not spread to my spine! The spinal tap itself was no piece of cake, but receiving the good news was worth the five days I spent lying on my back. I had what they call a "spinal headache," which is not uncommon after having a spinal tap. The fluid they extract regenerates itself usually within 1-2 days, but often there can be a very small internal leak at the sight of the puncture, which prolongs recovery time. Therefore, the only comfortable position is lying down because standing up creates an instant headache. On the upside, this was the first year I got out of doing dishes after Christmas dinner!

Love,

Sareana

2008-12-27T10:33:00.008-07:00

Dear Friends and Family,

It's been a month since I last wrote to you. At that time I was in the hospital preparing for brain surgery. As you know, the surgeons successfully removed the tumor, but unfortunately pathology revealed that it was malignant. Initially my thoughts ran wild and I wondered about the future. Would I be there for Alex? For Erin? For my family? Once those thoughts settled down, it was easier to process my situation. I still wonder about tomorrow, but I live with what I know today.

I suspect many of you are wondering, "How did this happen?" so let me give you a brief history. About a month prior to my surgery I started having headaches when I got up in the night to feed Alex. They would come and go quickly, and can best be described as an acute pressure in the back of my head. Over time they became more intense and painful. This was my only symptom, but the pain was severe enough that I decided to make a doctor's appointment. An MRI revealed the tumor, and from there things happened quickly. Suffice it to say, my life changed overnight.

Family and friends are wonderful during a time like this. My parents, sister and brother-in-law are such a help around the house, and they are taking great care of Erin, Alex and me. I have also received so many thoughtful cards, emails, care-packages, meals and messages of prayer from friends far and wide. Your support has filled my home and heart with gratitude. Thank you.

And I must also tell you about Erin and how marvelous he has been. He has endured quite a lot emotionally in the last month, yet he remains so strong, loving and supportive.

The next few months will be tiring for me physically as I undergo radiation to my head and spine, beginning in early January. However, this is a necessary step toward fully healing and I am ready to get started. We are encouraged by the doctors' input and the overall prognosis, and remain positive about the future. Just one look at Alex is all the medicine I need!

Happy New Year.

Love,

Sareana

2008-12-06T16:26:00.005-07:00

Dear Friends and Family,

Sareana is recovering well from the surgery. She's getting stronger every day.

We learned yesterday that the tumor is cancerous. The doctors removed the entire tumor, and so far the information indicates that that was the only malignant tissue. Nevertheless, Sareana will begin radiation and possibly chemotherapy in the next few weeks to ensure that any possible remaining cancerous cells are treated.

This is difficult news for all of us. But we are reassured by the fact that there's a treatment. We're also very thankful that the surgery went well, and we sincerely appreciate everyone's support.

In usual Sareana fashion, she is mixing humor with the love and wisdom that is guiding us. She should be home in the next few days, and she has truly enjoyed your notes and letters.

Love,

Nicola

2008-12-02T16:59:00.002-07:00

Family and Friends,

Sareana's surgery went well today. They successfully removed the tumor and Sareana is now recovering. We still have a few days before the doctors can diagnose the type of tumor, and we'll know more then about next steps. I'll be in touch at the end of the week when we know more.

We're very thankful that they surgery went well, and we deeply appreciate everyone's support.

Love,

Nicola

2008-12-01T15:58:00.003-07:00

Hello Everyone,

Sareana wanted to let you all know that her first procedure went well today and she's in good shape for the surgery tomorrow. She's been reading all of your notes and appreciates everyone's support. I'll plan to send another update tomorrow evening.

Love,

Nicola

2008-11-30T11:07:00.007-07:00

Dear Friends and Family,

I'm writing to share some unexpected news, but first let me start by giving you an update on my beautiful baby boy. Alex is almost 7 months old and is blossoming. He has a smile that stretches from ear to ear and the ability to brighten anyone's day. Many would agree he is a very happy baby.

I have some difficult news to share. I am having an operation on Monday and Tuesday. An MRI revealed last Wednesday night that I have a growth in my brain. The tumor is located at the back of my cerebellum, which is a relatively good place as far as location goes for removal. Please take comfort in knowing that I am being cared for not only by my loving husband Erin, but also by an excellent medical team at the Barrow Neurological Institute at St. Joseph's Hospital in Phoenix. Alex is also in great care with my parents, who are already here visiting for Thanksgiving. My sister Nicola and brother-in-law Dave are on their way.

Once the pathology of the tumor is known, we'll know more about my recovery time. Nicola will send you an update later this week to let you know how I'm doing. I appreciate all of your good thoughts and prayers that come my way during this difficult time for our family. I know I will get through this and be back home soon.

With love,

Sareana

PS: You are more than welcome to call me or Erin and leave a message on our phones, although we probably won't return the call right away. They don't accept flowers in this section of the hospital, but letters are great. Send them care of our home address.