Two Weeks Later

Hello all,

Prior to surgery on July 10, most doctors who looked at my MRI scans were relatively confident that it was a recurrence of medulloblastoma. Therefore, Erin and I sought information from experts at CU Hospital in both the radiation and neuro-oncology fields to discuss suggestions for treatment of a medulloblastoma recurrence. We did this with the knowledge that without pathology results none of the information we gathered could be certain. We have received initial pathology from CU and interestingly it suggests a much different type of malignant tumor. This new development means any information we previously gathered is null and void. I’m going to hold off from writing about specifics of my tumor until I have more solid information.

Last week Erin and I returned to Denver to meet with CU radiation and neuro oncologists who gave us their potential treatment plan, based on initial pathology. We are currently seeking more opinions from doctors across the country, which is easier said than done. We (mostly Erin) are spending a good deal of time getting medical records, MRIs, and pathology slides from the past and the present sent to a number of different medical institutions. My uncle has been helpful as well, getting the process expedited as we are on a bit of time crunch since a treatment regimen should begin in the next few weeks. The doctors we saw last week all said I have recovered from surgery nicely and if you saw me today you’d probably agree. Unless you knew my story, it would be hard to believe that I had brain surgery just over two weeks ago! Physically I’m feeling pretty great; mentally I am doing my best to stay positive although given these tough circumstances it’s not always easy.

Erin went back to work this past weekend on a 4-day trip, which was a very good change of pace for him and also for me. I was happy to have the boys to myself and feel a sense of normalcy. We missed dad, but I would say the highlights for the boys involved kind gestures from neighbors who taught them how to fish for crawdads in a nearby creek with their new kid fishing poles and getting treated to TCBY. The highlights for me were our ritual of pizza and movie on Friday night and our morning routine of reading three books by the fireplace right when we wake up. Those boys can be quite a handful, but taking care of Alex and Dean while I’ve still got the energy is a great distraction from the reality of what’s going on around me.

 Erin and I will likely do a bit of traveling this week or next to meet with other doctors in different states. We also have a phone consultation with a doctor in California. We are certainly doing our research to find the best possible course of action for my treatment plan. I hope to have more to report soon.

Have a lovely week and take care,

Sareana

P.S. Receiving a cancer diagnosis is a very complicated matter and navigating our way through this process for the second time, my family and I have learned a lot more about the "c" word than we should have to know.  However, I wanted to take this opportunity to share some basic knowledge for those of you interested.  

So, why is it necessary to receive some form of radiation, chemotherapy, and/or other treatment post-surgery for a malignant tumor? I have had two successful total resections, which means the surgeons were able to remove the entire tumor in both 2008 and 2015, which is a very positive thing. However, surgery alone cannot ensure that all cancerous cells have been removed; they continue to exist in the area of the tumor (the “tumor bed”), even if only on a molecular level.  Cancer cells are aggressive and multiply quickly, therefore some combination of radiation/chemo/other therapies are prescribed to, ideally, kill all the bad cancer cells, or at least slow down their propagation. So, without treatment there is a 100% chance that cancer will recur and ultimately result in death.  

An unfortunate side effect from these treatments is that healthy cells are damaged, which is why cancer patients become ill from their therapies (nausea, fatigue, hair loss, etc). Another serious risk of radiation is that it eventually can result in “radiation-induced” tumors some time after treatment; i.e. a new type of cancer can form either locally or present itself in another part of one’s body that was in the radiation field. So, one might deduce that cancer treatment is a double-edged sword: you’re damned if you do and damned if you don’t.  Some good news is that cancer treatments are constantly evolving, and even in the last six years, some protocols have become both more effective and less toxic to the patient.

**I received this card from a friend that I think describes me pretty well...

one tough cookie!**

One Week Later

Greetings Friends and Family,  

Ebby, Sareana, and Nicola

My, oh my, how much has transpired since the last time I wrote. For one, I had brain surgery a week ago today. I’ve had tears of sadness, tears of joy, felt pain, had plenty of pain-relieving drugs, felt much anguish and worry, slept quite a lot, taken deep breaths, breaths of anticipation, and breaths of relief. I made it through part one of this long, arduous process. Good on me, but the fight isn’t over-- not by a long shot.

On the morning of my surgery, it felt strange to walk into a hospital feeling perfectly healthy, having biked a tough ride the previous day with Erin, yet at 3:30am tearfully kissing my kids’ foreheads as they slept so soundly to say goodbye. My check-in time at the hospital was 5:45am, but despite the early check-in Erin and I decided to stay in Fort Collins knowing we wouldn’t get a wink of sleep anyway. When we arrived at the pre-surgery check in area in Denver I started doing exercises to psych myself up. I lunged, did push-ups, jumped up and down, stretched, loosened up my neck back and forth, did a yoga pose or two. I’m sure it looked like I was getting ready for a fight, which wasn’t all that far from the truth.  I’m sure the other patients or caregivers sitting in the waiting room watching me wondered what the heck is she doing, but at that point I didn’t care. My focus was knowing that at any second I would be called in to the inpatient prep room and begin the fight of my life.

First, I put on a one-size only fashionable hospital gown, which immediately identifies one as a patient. Next, the resident doc came in to begin prepping me for surgery even though surgery wouldn’t begin until hours later. She put markers all over my head, which she explained would help guide docs during surgery to keep my head in place. About five blue/black markers that looked like eyeballs were attached close to my hairline of my forehead, which I believe made me look like an alien and other markers were put on my skull in various places. She had to shave small swaths of hair in order for them to stick. She put dark circles around all the markers in case they became detached, which added to the attractiveness of my ensemble. Next, they rolled me off to get an MRI where they’d have an up-to-date brain scan prior to surgery. Many hours later I’d have another MRI scan right after surgery as well. Following the pre-op scan I returned to the prep room to be greeted by Erin and my parents, who were happy to see me although naturally a bit taken aback by the markers on my face. Prior to surgery we were visited by a myriad of doctors, nurses and finally the anesthesiologist. We confirmed that I would have a lumbar puncture (spinal tap) prior to my brain surgery to ensure that no cancer cells had metastasized to my spine. Having had a spinal tap once before in 2008, I was happy to be under anesthesia this time around. The anesthesiologist wheeled me back to the operating room and before we arrived I was “asleep.”

When I woke up in the post-surgery recovery area all I saw were smiling faces of my family. It was pretty awesome to be on the other side of surgery, have all my faculties functioning, my mind working, and part one complete. I spent four nights in the hospital, which wasn’t too terrible because it allowed me to get the rest I needed and learn how to best manage my pain. Once cords, catheters, IVs and nodes were removed I started to feel like a real person again. I eventually retired the hospital gown for a more fashionable look thanks to my sister and started to go on twice daily walks around the floor escorted by a family member or nurse. The first day’s goal was one lap and by the time I left I could run a lap (only kidding). Though I wasn’t breaking any records, at least I was up and moving around. I truly believe that being healthy and fit before surgery has helped speed up my recovery process. Physically I am pretty beat, but I'm doing well all things considered and my stamina increases daily. 

I also got a much-needed visit from Alex and Dean on Sunday who were so happy to see me, and I them; they offered the kind of medicine no one can prescribe. On Tuesday, I was released from the hospital and decided to spend one extra night in Denver at a condo of my mom’s friend who graciously offered her space. My parents, Nicola and I all agreed how special it was for the nuclear Pinson family to be together, a rarity anymore (Erin had gone back to Fort Collins to be with the boys). We took a walk around our old neighborhood elementary school and reminisced about how so much has changed since we were little girls.

Though pathology has not yet been released, the wheels are already turning as to where/when I might start treatment. We are considering a number of different options and will eventually choose the best course of action for my particular case. This may involve traveling to a few different hospitals in the next few weeks to meet with doctors in person. No matter what the outcome, it’s most likely treatment will begin in three or four weeks. This gives me a little recovery time and time to be home with my boys who have been extra sweet to their mama. I’ll give you two examples: Alex gave me a big hug when I got home and said, “Mom, I’m so happy to see you, I love you to the moon and back.” Putting Dean down for bed the first night I was home I began to quietly cry in the dark because I was just so happy to be there. Dean got out of bed and said, “Mom, why are you crying?” I told him I was happy to be home. I asked him what I should do to stop crying. He said in a whisper, “Wipe your tears and take a deep breath. It'll be okay.” How is it that a seven and three-year old can understand human nature so well despite their complete innocence to the pain their mother is going through? They are so precious. I’m one lucky mama!

With these last few words I want to thank all of you who have reached out to offer support and love during this time. My family and I truly appreciate it. This is not just my journey, but all of ours and we have to stay strong to get through this together. I wish I could respond to each of you individually, but hopefully you know that I am thinking of you, too. I’m glad my blog helps keep us connected. Until next time when I have more information to share...be well.

Love,

Sareana

What's wrong with this picture?

Sareana is recovering very well.  She slept pretty decent last night, far fewer interruptions here in a standard room than the first night in ICU.  She's been getting meds orally and via IV, and now she is easing off the IV stuff and hopefully will be on oral meds only from here on out.  From the neck down, her body is doing great-  we've been taking a few laps around the ward to get some exercise.  She is walking slowly but steadily.  Her neck is very stiff and sore, and her range of motion limited- this is to be expected, and should improve with time.  For now, she is trying to rest a bunch, and to get up and move a bit when she's not resting.  They may turn her loose and let us head home in another day or two.

You'll be happy to know that she is in every way herself- same sense of humor, positive attitude, all of her faculties are intact, etc.  So her brain still works, which is nice.  She's just sore and tired and medicated and uncomfortable and all the other stuff that comes after a big surgery.  

She is too tired to talk much or text/type- it may be awhile before she has the energy and the range of neck motion to do that sort of thing, but know that she appreciates all the well wishes and good thoughts. 

Best,

EK

All signs are good

A quick update to let you know that Sareana is herself post-surgery.  Her functions are in tact and she's giving the right answers to all the test questions.  E.g. Doctor: "Do you know where you are?"  Sareana "I just had brain surgery." She's impressing everyone.  Managing a good amount of pain this weekend, which is expected, and should improve each day.

Meanwhile, the Kelly boys are just little angels. They only locked me out of the house once today - and when I came in the garage door, Dean was in the kitchen with a bottle Hershey's syrup pouring it into his mouth and had already added a dose to Alex's glass of water (btw, I was outside cleaning Dean's toilet, lest you think I was out there reading a book). That 's when I had to lay down the law - and they seemed to realize that I have some sisterly similarities to their Mom's rules.

Otherwise - we've been out eating ice cream, riding trolleys, building legos, riding bikes. They are clearly relieved that the tumor is out of their Mom's head. Dean had offered to get his tool box to take it out himself - so they were both very glad to hear that the docs had done their job.

Love to everyone.
Nicola

Surgery complete!

A quick note for everyone - the surgery was successful and Sareana is doing well. She had a great surgeon and he removed the entire tumor during a 6-hour surgery. Erin is waiting to see her and I'll give you more of an update when we hear what she has to say. Love to everyone. Our family appreciates all of your support.

On the home front, the Kelly boys are doing well. I gave them a couple of Portland tattoos this morning, and am planning to feed them pizza and brownies, and watch a movie tonight.   

Love, Nicola   

Then and Now

Dear Family and Friends,

It has been a while since we’ve communicated in this way. To be exact, I ended my blog “Notes From Sareana” on December 17, 2009, one year after I was diagnosed with brain cancer. Here is an excerpt from that entry:

“This past year has 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…I'm not going to cower from this disease, I will stand strong and believe in a bright future.”

And a bright future I have had! Here are some of the highlights of one busy mama: Erin and I had another baby boy named Dean who is now 3 1/2 years old. Alex, age 7, will be entering second grade this Fall; I earned my Masters in Elementary Education; our family moved from Portland, Oregon to Fort Collins, Colorado; I’ve ridden my bike countless miles and competed in a time trial up Vail Pass for fun; I substitute taught at a wonderful elementary school in Fort Collins this past school year; I was offered a job at that same elementary school to teach 2^nd grade. Part of what gave me the confidence to move forward in my life both on a personal and professional level was that I released the fear that cancer could return at any time and chose to live my life on my terms, not cancer’s. So, it is with a heavy heart that I begin “Notes From Sareana” again today because after six and a half years cancer has indeed returned.

However, before starting new notes, I thought I would recap here what took place in 2008-2009 as a reminder of where my story begins…

In May 2008, my eldest son, Alexander, was born in Phoenix, Arizona. At 31 years old, I had just finished my third year of teaching fourth grade. The plan was to return to school part-time in the fall as an administrative assistant, which is what I did until November when my world was turned upside down. For a month I had been having acute, severe headaches located in the back of my head toward my neck, but strangely they were only at night. I attributed the headaches to being an exhausted new mom, but they continued to get worse over time. I finally went to see a doctor the Wednesday before Thanksgiving when my family was in town visiting. After I told the doctor my symptoms (dizziness, nighttime headaches) she said she’d like to have me get an MRI that evening. The MRI unexpectedly revealed that I had a brain tumor.

Needless to say, this news was shocking and confusing, but having my husband and family present at the time was helpful in understanding next steps. In the face of something as serious as a brain tumor, the primary questions becomes when and where will surgery take place? Coincidentally, I lived only 20 minutes from a highly reputable neurological institute in Phoenix. Another plus is that my uncle is a doctor and CEO at a university hospital and assisted in arranging a well-regarded neurosurgeon to perform my surgery. When it comes to brain tumors, there is a sense of urgency because they can be aggressive and grow quickly, thus my operation took place less than a week after that initial MRI. After surgery, pathology revealed what none of us wanted to hear: the tumor was malignant.

The name of my cancer is Medulloblastoma, which strangely enough is a common childhood cancer. I quickly learned that in the world of cancer, the disease does not discriminate; it is unkind and it is relentless. There is no history of cancer in my family and by all accounts up until then I had been healthy my whole life. With this unwelcome news came a treatment plan on how to best prevent its return. I endured six weeks of radiation to my head and spine. I lost a lot of things during that time period: my ability to care for Alex, my hair, my appetite, my sense of innocence, and my place in the world. However, I never lost hope because after all, my now 8-month old baby and my husband (Erin) needed me…and moreover I needed them.

After my treatment was over in Phoenix, Erin and I decided to sell our house and move to Portland, Oregon to be closer to my sister and her family. Erin is a commercial airline pilot, so when he was away, it was nice to have a nearby support system. I was connected with a neuro-oncologist (a friend of my uncle the doctor) at Oregon Health and Science University (OHSU), who would keep a close eye on me in the form of regular MRIs and check-ups. Initially, I had a cranial MRI every three months, which eventually became once every six months, then eventually once every year.

Year after year my MRIs were “clean,” which gave me the confidence to move forward in my life both on a personal and professional level. I had a second child named Dean in January 2012. I earned my Masters in Elementary Education in May 2013. The summer of 2013, Erin, the boys and I moved back home to Colorado where we always dreamed of raising our kids. Though I’m from Denver, we chose Fort Collins because it seemed like a good fit for our family. In January 2014, I began to substitute teach in Poudre School District with high hopes of someday getting back into my own classroom.  In August 2014, I found myself sitting in an interview for a long-term substitute position at an elementary school in Fort Collins. I spent the majority of the year subbing at this school, which was incredibly gratifying; I became part of a tight-knit community of educators who care so deeply about children with a leader like no other at the helm. I felt whole again, so you can imagine my joy when I received a call from the principal a few months ago about an offer to work with the second grade team the 2015-2016 school year. I was ecstatic and started right away visualizing what my classroom would look, feel and sound like with a room full of young minds ready to learn and grow under my tutelage.

Though I now live in Fort Collins I continue to see the same neuro-oncologist at OHSU in Portland, Oregon for my MRIs. My last MRI was only six months ago in December 2014, which was “clean” as it had been time and time again over the past 6 years. According to my doctor, I was a real rarity considering there is not much data out there for adults with Medulloblastoma. To better align my MRI schedule with a teacher’s schedule, I wanted to change my annual MRI schedule to summers instead of winters so my subsequent MRI was scheduled for June 17, 2015. We were headed to Portland to visit my sister and her family anyway so I combined the two. This MRI was like any other I’ve had in the last six and a half years only the outcome revealed something different: cancer has returned. This unfortunate news does not have the same shock effect as it did in 2008, however, it does not make it any easier. Life is more complex with two children and living far away from OHSU. Cancer brings life to a full stop. My plans and the plans of those close to me come to a full stop. I am thrown back into the world of being a cancer patient--a place I loathe, a place I don’t belong-- with an outcome I cannot control. I’m at the mercy of a disease that has no cure. I am forced to look at Alex and Dean and think about the real possibility that I won’t be here to watch them grow. I ache for my loving husband who must not only be there to support me, but also be the primary caregiver for our children during this process. I desperately want to be here to for my boys and husband, to be the mother and wife I am today. I have a lot more living to do. I am sad, scared and angry, but I have to stay positive, I have to remain strong both physically and mentally. One way I do this is by riding my bike. I love to climb hills, to hear my breath and the beating of my heart. It is in this moment that I am alive. I have to believe that I can pedal up this mountain a second time. I am a survivor. My mantra has always been to breathe, just breathe.

I hope that you are able to take pause and think of my family and me as we embark once again down this difficult path.

Love,

Sareana

The following is logistical information…

Part one is the surgery itself. My surgery will take place on Friday, July 10 at University of Colorado Health in Denver. The tumor is in the same location of my previous tumor, which likely means it is Medulloblastoma. The doctors we’ve spoken with over the past few weeks all agree that it is an operable tumor and not a complicated procedure as far as neuro-surgeries go. My parents, who live in Eagle, CO, as well as Erin will be with me at the hospital. My sister, Nicola, will be flying in from Portland to take care of my boys in Fort Collins while I’m in the hospital. Nicola will update you on this blog about how I am doing after surgery. After an estimated 3-5 days in the hospital I will come home to recover and gain strength before treatment begins approximately three weeks later.

*****I kindly ask for no visitors during my hospital stay, thank you*****

Part two is to determine where and when my treatment will take place and what it will look like. Since 2008 scientific advances have been made regarding targeted treatment for specific kinds of cancer. My treatment will most likely involve a combination of radiation and chemotherapy; however, my specific regimen will be unknown until after surgery when they can examine tissue from the tumor.

You might be wondering what can you do for me?

The best thing you can do is to keep my family and me in your thoughts and prayers. These have been very heavy days since I learned of my recurrence, but my boys make things ‘normal’ and my husband supports me like a rock. My devoted family will be by my side every step of the way just as they were six and a half years ago. We just spent a week in Eagle, Colorado visiting my parents over the July 4^th weekend. I always love being up in the mountains surrounded by beauty, peace and a sense of calm. I also tackled some hills on my bike while we were there!