Three Down, One To Go

A week ago today I was lying in my hospital bed counting down the hours before I could escape the confines of my room. The first day of chemo has typically been the “easiest” because I’m starting out with nutrition in my belly, a good night’s rest and a strong body. However, by the end of Day 1 and until I get wheeled out of the hospital on Day 3, I feel like I’ve been run over by a truck. Knowing how hard the chemo hits me, I try to take advantage of every second I have before I’m hooked up to the IV pole that carries the chemo through my veins.

So, last Monday morning after being admitted to the hospital and waiting for the pharmacy to mix my “chemo cocktail,” I took the time to explore a little bit. What I found was refreshing: air. There’s a covered bridge connecting two parts of the hospital that happens to cross over to the same floor as the oncology unit. I decided to jog back and forth across the bridge to increase my energy, breathe the crisp, morning air and mentally prepare for my upcoming treatment. It felt good to be alive.

One might think that I fill my days in the hospital reading, flipping through magazines, watching movies, calling room service, but that’s just not the case. My level of discomfort is so high that most of the time all I can do is close my eyes and try to sleep. Some of the symptoms I’ve experienced over the course of my chemo treatments include nausea, drowsiness, diarrhea, vomiting, constipation, ear ringing, loss of appetite, headache, and hot flashes. Nurses do their best to make sure I’m comfortable, but ironically, they can give me one medicine to help mitigate a symptom such as nausea, but that will usually just add another--constipation. The entire thing is a lose-lose situation until I get home. Nursing myself back to health takes about 72 hours, but my boys help to speed that process up by just being around me. And Erin, well, he’s just amazing through and through. 

Today, I shoveled snow and ate homemade chocolate chip cookies...simple pleasures, but they mean an awful lot to a girl like me. It’s sometimes hard for me to imagine the stark difference of where I was a week ago versus where I am today. My next cycle will begin after the New Year, so I have plenty of time to celebrate this holiday season with my family feeling healthy and strong.

Merry Christmas and Happy New Year!

Love,

Sareana

More is Better

Last week Erin and I took a whirlwind trip to Duke to meet with my neuro-oncologist, have my blood drawn and get an MRI. The good news is that the MRI was clean, which drew big sighs of relief from Erin and myself. There’s really no bad news except that I’ll have to endure two more cycles of chemotherapy, which I expected would be the case. Due to the fact that I’ve tolerated the first two cycles so well, the doctor sees no reason not to continue the regimen with the theory that, in this case, more is better.

I must say, I’m not looking forward to tomorrow morning when I return to the hospital for three more days of total discomfort. I know it can be done because I’ve done it twice, but that doesn’t make it any easier. I think I’m reaching the point that I’m just so drained and tired of the weight of cancer.  There are bright spots, like a clean MRI or the knowledge that I’m nearing the end of treatment, but I hate that this is my job: beating cancer. As the popular bumper sticker suggests: “I’d rather be fishing.”

After our meeting with my doc at Duke, Erin and I rushed to the airport for my flight back home to Denver (Erin took a different flight because he headed off to LA to begin a 4-day trip). Arriving only 20 minutes prior to departure, I knew my chances of making the flight were slim. Without any time to debrief my doc visit, Erin and I parted briskly then I headed for security. Luckily, the lines were short and I was making good time until a TSA agent asked me to remove my hat. I told the woman in a soft voice that I had cancer and would prefer a private screening due to the fact that I was bald. She could tell I was in distress about making my flight and frankly, I was feeling pretty vulnerable in that moment. She sped up the process and cleared me to collect my belongings. A moment later, with my back turned, she put her hand on my shoulder and said, “You’re not alone in this fight.” With a lump in my throat, I rushed on the airplane shoes untied, took my seat, put on my sunglasses and let out the tears I’d been holding in. I just wanted to get home and see my boys.

Love,

Sareana

Giving Thanks

Giving thanks… I’ve been doing a lot of that the past five months and tomorrow is certainly no exception. Thanksgiving has historically been one of my favorite holidays. At its core, I believe Thanksgiving means spending quality time with loved ones and graciously reflecting on the good things in life. It’s a holiday to give gifts that can't be wrapped, and share in the filling of hearts (and bellies) with happiness. Ironically, this celebration of bringing people together also marks a vivid point in time seven years ago when, if only for a moment, I felt very alone.

The day before Thanksgiving 2008, an MRI revealed that I had a brain tumor and less than a week later, I learned it was cancerous. Without a doubt, every Thanksgiving since has held a deeper meaning for me and carries with it some pretty raw emotions. This Thanksgiving is no different as my roots of gratitude just keep digging deeper. It goes without saying that I don't welcome cancer's return, but I am more thankful than ever for my beautiful children, for my loving husband, for my above-and-beyond supportive family and friends, and for my innate ability to keep putting one foot in front of the other.

Since my first diagnosis, cancer removed any ability I might have had to take things in life for granted-even my breath. I am so grateful to be a part of a cycle of life that keeps cycling, a world that keeps turning and watching time keep on ticking.

Love,
Sareana

P.S. Happy Thanksgiving!

Just the Messenger

Cycle two surprised me. It was a lot harder than the first cycle in many ways, but mostly it dragged on for what seemed like forever. They unhooked me from the IV pole (the pole I'm attached to 24/7 that holds all the drugs and fluids) at around 9:30pm on Wednesday night. Then I watched the clock tick until my discharge papers arrived and my dad brought me home. There was no way I could spend another night in the hospital. I needed outta there! I spent Thursday recovering mostly in bed, but on Friday I started to perk up again just in time for my boys’ school Halloween parties. I’m not sure what was the greater incentive: getting to wear my purple wig and witch hat or getting out and about.

Though hours can’t pass quickly enough while I’m in the hospital, I’m glad my chemotherapy is administered as an inpatient. My private room on the oncology floor is such a surreal environment away from everything I deem normal. Then the moment I’m released, my norm returns. I am fully on board with the ultimate goal here: prevent cancer’s return; chemotherapy is just the messenger, cancer is the real culprit. Though chemo was the source of my extreme discomfort for three days this week, I can’t blame it for making me feel weak and disheartened. My cancer diagnoses attempted to do that a long time ago. It’s my job to rise to the occasion and face the ugly truth of what it really looks and feels like to fight cancer. Chemotherapy is just doing what it’s supposed to do, kill bad cells; it’s only trying to help.

It is truly amazing how the human body recovers from such experiences. I am grateful that just a few days later I feel so much better. It does not hurt that Alex nor Dean blinked an eye at my absence and welcomed me home as if I never left. They had my parents here to fill the love gap while I was gone; to whom I could never shower with enough gratitude. As fortunate as I am to be close to my sister, I am equally fortunate to be close to my parents. They prove time and time again that the love for one’s child really does span a lifetime. I love you, Mom and Dad.

Love,

Sareana

Purple Locks

These last several weeks since completing my first cycle of chemotherapy have been nothing like I imagined they would be. From the moment I inhaled my first breath of fresh air after exiting the hospital to the smell of autumn air today, I can officially say that I tolerated the 3-day regimen very well. Some noteworthy positives: normal appetite, no fevers, no nausea or need for anti-nausea meds, normal energy, regular exercise, hearing intact, site of port healed well, drank plenty of water (not wine) and overall maintained a healthy disposition. My blood counts, which I get tested weekly, were initially lower than my baseline, as was to be expected, but have risen week-by-week. I think having one cycle that I tolerated well under my belt takes a great deal of anxiety off my plate as I prepare for Cycle 2. Cycle 2, which will also be administered as an inpatient, begins tomorrow and ends Wednesday. The fact that I’ve had minimal side effects should not, however, imply that everything in my world is rainbows and unicorns. I am, after all, going through brain cancer treatment for the second time in my 30s and I do not want to discount the fact that this continues to be a very hard and trying process on many levels.

Two difficult, yet tangible issues that I currently grapple with are my port and hair loss. Though both are temporary, neither is much fun. Having a foreign object protrude from under my skin has taken some getting used to. The site of my port surgery has required time to heal, it’s sensitive to the touch, and I am always wary of its presence when using my right arm or laying on my right side. On the upside, when I’m receiving chemotherapy as an impatient, it allows both of my arms and hands to be free without the inconvenience and discomfort of an IV. Ideally, I could have the port magically implanted during my hospital stay and have it removed for the days I’m home. Too bad that technology isn’t yet in place. Perhaps an idea for a future invention of Dr. Dean or Alex Kelly?

   

                                    

 

Regarding hair loss, there are no big surprises here. I am experiencing exactly what was expected in terms of timeframe post-chemo. I’ve lost most of my hair, and I’m only days away from being bald. I am not of the frame of mind to shave my head; I prefer to let my hair fall out gradually. Having gone through hair loss once before as a young woman and mom, I believe this is a tough cosmetic side effect of cancer treatment. I’ve heard of women embracing their baldness, but not me. After two brain surgeries, I have a pretty nasty scar running up the back of my head, which mostly I work to keep hidden. I do not celebrate being bald, it does not empower me, it actually pains me because it’s the only physical sign I ever see in my reflection that makes me appear sick, even if I don’t feel sick. Fortunately, my hair loss is not confusing or scary to Alex and Dean as I’ve done a good job of explaining what’s going on…it’s almost like they don’t even notice. Surely wigs, scarves and hats do their best to cover what’s missing, but they are not replacements for what I’m missing. That said, my internal voice of reason repeatedly reminds me that this external change is not a big deal in the grand scheme of things and that my hair will eventually grow back. Another hard to ignore environmental reminder are the bare branches whose leaves will eventually grow back: tis’ the season for hats, scarves…and wig wearing.

This Halloween I have a fantastic witch hat under which I’ll don long, curly purple locks…a spooky version of the Good Witch of the North (see pic below). Alex has a shark-themed costume: he will be a shark-attacked surfer wearing a scary shark t-shirt carrying a cardboard surfboard bitten by a shark. Dean will be a superhero: Batman. He’s told me that whether good witch or bad witch, “I’m going to take you down.” Erin is going to be a lumberjack, no costume purchase required except maybe a beard. It’s safe to say, the Kellys are ready for a haunted holiday!



What lies ahead…

On November 30, Erin and I will head back to Duke University for an updated MRI and a visit with my neuro-oncologist. At that point my doc with determine whether we continue with two additional cycles or bring chemotherapy to a halt. Should I move forward with a third cycle, it will likely begin the second week in December, with the fourth cycle landing sometime in January.

I’d like to send a special squeeze and thank you to my sister, Nicola, who recently visited Fort Collins. She came for a week to spend time with my boys and me while Erin was at work. I’m lucky. Nicola and I have always had a close sibling relationship. She understands every corner of my cancer “box,” despite the fact that I’m the only one that fits inside. She’s always been there for me, and she always keeps her heart close to mine.

Love,

Sareana

Cycle 1--done!

I practically sprinted out of the hospital yesterday around 11am after I was officially discharged. Spending four days in a hospital receiving chemotherapy without a breath of fresh air was quite a feat. However, I did it and I’m done with cycle one! Wahoo!

As Erin described in his blog post earlier this week, day one was an extremely long day for me. There were some unexpected hiccups along the way on Monday, which meant chemo wasn’t administered until nighttime. That resulted in nightly chemo for the rest of the week and leaving the hospital a day later than I had planned. Fortunately, the hiccup wasn’t serious and getting the port to function properly was a minor issue, but a major delay. In some ways sleeping through the chemo was a good thing because with eyes closed, I could imagine the drugs coursing through my veins and me pointing them in the right direction, so to speak. However, the downside is that I was woken up quite a bit for any number of reasons, so I had little restful sleep the entire week. Cycle 2 will hopefully begin earlier in the day because on day one I’ll already be set with my port and there won’t be a bone scan. But you never know…

All in all, I think I fared pretty well this week. I had the pleasure of experiencing both ends of the digestive spectrum, loss of appetite, lower blood counts by day three, and fatigue.  Though I’m not sure how much of the fatigue was due to loss of sleep and how much was from the chemo itself. It’s certainly nice to be home so that I can sleep through the night without interruption and overall take it easy without being attached to an IV pole dripping fluids in my body 24 hours/day. This IV kept me hydrated in addition to my Nalgene, which I filled with water diligently. I’m not sure the nurses had ever had a patient who created their own “Pee Tally” before, but I did. For exercise I was able to walk the “loop,” which is a short lap around the oncology unit.  It was not that impressive, but it was all I had, as they do not let patients receiving chemotherapy leave the floor. On the opposite end of the chemo floor is the birthing unit, which was actually pretty neat. Every time a baby was born they played a short lullaby over the intercom. It was nice to think about the start of a new life beginning on the other side of the walls--a stark contrast of where I stood in the oncology unit.

Today, technically the final day of this cycle, I will receive a neutrophil shot at the doctor’s office that will help make more white blood cells and protect against infection. Speaking of blood counts, I want to take a moment to explain them because they are really important to my overall health during this process. One of the chemotherapy brochures I've collected explains bone marrow suppression:

Your body produces three main types of blood cells. These are made in the bone marrow and travel throughout your body in your blood stream. These blood cells are: white blood cells (WBCs), red blood cells (RBCs), and platelets. 

WBCs fight infection. There are several types of WBCs, but the first line of defense in fighting is the neutrophil. RBCs carry oxygen to all body tissues and take away carbon dioxide. Platelets help blood to clot to prevent bleeding. Most chemo destroys some blood cells and decreases the production of new cells. Your blood counts will be monitored closely during treatment by a blood test called a CBC (complete blood count).

 

In between cycles, my CBC will be monitored weekly by my local oncologist to be ensure my blood counts are in the normal range.

Hard to explain how nice it is to be home again. Dean, Alex, and I read by the fireplace together this morning, one of my favorite rituals. I received a very sweet, yet funny note from Alex during my hospital stay, which you can view below. As you can tell, he seems to understand my needs pretty well.

I am proud of how well my boys are doing despite the circumstances. They are so resilient, so young, so innocent. I believe Erin and I have done a good job of educating them just enough to know what’s going on with mom, but not so much that they are worried about me. I want to publicly thank Erin for being so amazing. He stands up tall as a dad in a tough situation to support his children and at the same time he rises to the occasion as a husband to support his wife. And not to mention all of his responsibilities when he goes to work to support our family financially. It’s not easy by any stretch of the imagination. This is true love.

Love,

Sareana

Hello All-

EK here.  Sareana is spending her second night in the hospital, and doing well.  Yesterday she got up at the crack of dawn to report to the hospital at 530 for the port installation surgery.  Surgery started at 7 a.m. and went fine- the surgeon called me around 745 to report that everything had gone well and Sareana was in recovery.  I got the boys off to school with the help of Kristen from across the street, and was at the hospital by 830 or so.

They got Sareana to a room around 915; she was tired and sore, but nothing compared to post-brain surgery.  Her neck, shoulder, and area around her clavicle where the port is are sore, but this means no more IVs (which have always been tough for her- small veins) throughout the chemo process.  They can put chemo, anti-nausea meds, pain meds, hydration, draw blood, whatever, all through the port, and they can do multiple things simultaneously.

Before starting chemo, the oncologist wanted her to have a bone scan.  Around 1030 they injected a contrast of some sort, then waited 3 hours for it to go where it needed to prior to the scan.  Scan was from 130 to 230 or so, then another couple hours before they started the chemo.

The first chemo medication takes 6 hours to infuse (i.e. 6 hours of dripping via IV).  There was a minor problem with the interface between the port and the IV tube at first, so they stopped right away, tested out the port with another scan to find the problem, and ended up re-"tapping" the port to make sure everything was flowing correctly.  This took several hours, so she didn't actually start chemo until about 730 pm, and it ran til about 130 am.  She was able to sleep intermittently throughout the process.  It's good that she's at the hospital and they're keeping a close eye on her, but that also means constant interruptions, checking vitals every few hours, lots of people stopping by at all hours, etc., so it's tough to sleep.

She spent today recovering, resting, and overall feeling tired, but pretty decent.  They have to wait 24 hours from the start of a chemo session to begin the following session, so she started tonight's session around 8 pm.  It's a different agent than yesterday; it only takes 1 hour to infuse, but it requires some follow-up drugs at 4 hours and 8 hours to help protect her from some of the side effects.  Hopefully she tolerates it well, we'll see tomorrow how she's doing.

The timing means that they won't start tomorrow's session until around 8 pm or so, plus the follow up drugs, so she'll spend Wednesday night at the hospital as well, and hopefully come home at a reasonable hour on Thursday.  Then one more outpatient shot at the doc's office on Friday, and hopefully that's it for this cycle.

The boys and I stopped by bright and early to visit before school, and hope to do the same tomorrow.  I was able to spend most of the afternoon with Sareana, and hopefully can do something similar tomorrow.

Thanks for all the good thoughts and well wishes, hopefully we can send out a post-chemo report in the next week or so.  Boys are doing well, Sareana is in good spirits, we're all hanging in there.

EK

Chemotherapy

After much thought and discussion, we’ve decided to go with the chemotherapy regimen recommended by my neuro-oncologist at Duke. Duke will manage the plan, while a local Fort Collins oncologist will serve as the liaison for administering the chemotherapy drugs. We are pleased that I can have my treatment close to home under the care of a local doctor, yet still have my doctor at Duke follow my progress from afar. As one might assume, both doctors will be in contact on a regular basis throughout my treatment.

The regimen consists of 2-4 cycles with two different drugs, which I’ll call ‘A’ and ‘B.’ Each cycle consists of three consecutive days of chemotherapy followed by 25 days off. Day 1 I’ll receive drug ‘A’ and Days 2 and 3 I’ll receive drug ‘B’. They are both given intravenously. Due to the high toxicity levels of these drugs, the entire cycle will be administered as an inpatient at a local Fort Collins hospital. I will be monitored closely for hydration, and be given specific infusions in addition to chemo to prevent undesired side effects related to kidney function and nausea. Though the chemo regimen will last three days, I will return to the doctor’s office on the fourth day for a subcutaneous injection. This will help provide protection against infection since my white blood cell count will likely be low.

One of the advantages of inpatient treatment is that I will be under continual care of doctors and nurses. Meanwhile, Erin can focus on taking care of the boys at home while I’m in the hospital. He can rest assured I’m in good hands when he is unable to be with me and promises to bring the boys for a visit!

The first cycle begins Monday, September 28, which will prove to be an especially long day for me. Prior to receiving chemotherapy, I will have a minor surgical procedure whereby a port will be implanted in my chest. A port is a common mode of receiving chemotherapy and other drugs. It is often preferred over an IV because a port provides more comfort during delivery of chemotherapy. It will be discretely located under my skin (near the clavicle) and attached to a tube that goes into a vein near the heart. A port can also be used for blood draws and for giving anti-nausea medications, etc. When no longer needed, a port can be easily removed as an outpatient. After the port surgery, I’ll have a recovery period then begin my first chemotherapy session, which may last up to six hours. It does not actually take that long to administer the chemo, but rather a good portion of time is spent introducing fluids into my system so that I’m well hydrated.

After two cycles, Erin and I will travel back to Duke for an MRI followed by a meeting with my neuro-oncologist. At that point he will determine whether or not we should proceed with two more cycles or stop at cycle two. To be clear, the minimum number of cycles I will have is two and the maximum is four.

In comparison to brain surgery and radiosurgery, I expect chemotherapy to be the most challenging phase, both mentally and physically, in this insanely exhaustive process that began in June. I believe this in part because I’m new to chemotherapy so there is a fear factor, and partly because I’ll have to deal with all of the nasty expected and possible side effects for a long length of time. On an optimistic note, it is important to remember that side effects are manageable; they affect each patient differently and will almost always go away after therapy is complete. I hope by maintaining a healthy diet, exercising regularly, listening to my body, and going in armed with so much knowledge, that I will tolerate this regimen well.

The expected side effects that I will experience include hair loss, fatigue, constipation, nausea/vomiting, skin discoloration, and low blood counts. There are also possible, yet less common side effects that range in severity depending on a patient’s overall health and drug dosage that include: bone pain, hearing loss, bladder irritation, diarrhea, problems with kidney function and neuropathy (numbness, tingling in fingers and toes). In order for doctors to determine how I’m tolerating the chemotherapy, they need a baseline or a starting point. Therefore, I recently had my hearing tested, blood drawn, and an MRI. The results for my hearing and blood tests are both in the normal range and thankfully my MRI was “clean.” Am I ready for all this? No, not really. These paragraphs were hard to write, and I’m sure they’re not easy to read. I struggle with the strange irony that I feel healthy today, yet on Monday toxins will be pumped into my body that will make me feel sick in order to make me better. Where is a magic wand when you need it?

The time between my last day of radiation and first day of chemotherapy hasn’t exactly been relaxing, but a relaxed state is hard to achieve when your thoughts are consumed with cancer day and night. Despite it all, space has been made for spirit-lifting activities. Erin and Alex attended the Reno Air Races in Reno, NV together while Dean and I had our own Denver adventure. We eventually all met in the Mile High City where the four of us had some good fun. We cruised around the lake at City Park on a paddle boat until Alex got “seasick.” We shared a few laughs with Erin’s cousin who hooked us up with great food and drink at the restaurant where she works. To put icing on the cake, a good friend from high school treated me to a lovely time at a fancy spa. On a recent sunny day, Erin took me for a ride in the Piper J3 Cub. Today, I tackled hills on my road bike then screamed downhill (mostly expletives aimed at cancer).

I am acutely aware that I have a few bad days barreling toward me, but fortunately, bad days are not my norm. This will be no walk in the park, but if I have to crawl, I will. I expect bad days to happen during this next phase because I’m human; because pain, both emotional and physical, hurts; because I will long to be there for Erin and my boys the way I’m there for them today. Reassurance from friends and family that I’ll never be alone in this fight gives me strength that there will be better days ahead. It’s hard to want something to be over before it ever begins, but I will always show up and do what I have to do so I can, as Erin so aptly puts it, “stick around.”

Lastly, Erin will be posting a brief message on my blog next week to let you know how I’m doing. Thank you for all your positive thoughts and support…none of it ever goes unnoticed!

Love,

Sareana

Typical bedtime conversation with Dean (age 3):

Me: “Thanks for being my boy, Dean.”

Dean: “Thanks for being my mom.”

Me: “I love you, Dean.”

Dean: “I love you, too, mom.”

Typical bedtime conversation with Alex (age 7):

Me: “I love you to the moon and back, Alex. Thanks for being such a good big brother.”

Alex: “I love you to the moon and back, forever and always. Now, can you please rub my back?”

Erin and Alex at the Reno Air Races

Dr. Alex Kelly

City Park paddle boat

After a Cub ride

Radio surgery: Day 10

Yesterday was a long, yet satisfying day. It started with my tenth and final radiation session. It felt pretty good afterwards to throw my mask in the garbage, although it might have felt even better to run it over with a car! I'm proud of achieving the next milestone on what can seem like, at times, an uphill battle. All things considered, I fared very well: no nausea, good appetite, slept well, no hair loss, minor fatigue. I believe one would still be unable to pick me out of a crowd as a cancer patient. However, frequenting the Duke Cancer Clinic on a daily basis for two weeks there are plenty of reminders as I looked around at the damage that cancer can do to those both young and old. It's a hard place to be for me, for anyone really because no one deserves to be there. One of the most pleasant conversations I overheard was between an older gentleman and a young college volunteer as they exited the shadows of the basement waiting area into the sun-filled atrium. The man asked the boy, "What are you studying?" The bright-eyed boy replied, "Biology, I hope to become a doctor someday." Yes, what a lofty and worthy goal, I thought to myself.

A few hours later, Erin and I departed for the airport for a 3 1/2 hour flight to Denver followed by an equally long drive to Eagle. We were greeted by my parents, but the boys had already gone to sleep. In the dark of their room I could still make out Alex and Dean's little chests rising and falling, and could hear the steady sound of their breathing. As I kissed them goodnight, I resisted the urge to wake them up and soak up all their love. I knew after many days apart, it wouldn't be long before they'd pile into bed with Erin and me in the morning shouting out their joy of having me back:) Priceless. And it's been like that all day. Lucky me! The pictures here are from the inaugural day celebration of the Children's Fishing Pond in Eagle, complete with free fishing rods for kids and cupcakes!
           
                        

So, what's next for me to tackle on the cancer front? We are still anticipating the return of test results from molecular sub typing and genomic testing to find a suitable chemotherapy and/or targeted therapy regimen (hope to get those in the next two weeks or so). In the meantime, I will rest and recover from radiation as it has a cumulative effect. I am definitely feeling more lethargic today after ten treatments than I did after the first five, but that is to be expected. In addition, most doctors would not be in favor of beginning chemotherapy until 3-4 weeks after radiation is complete, so we're in a bit of a holding pattern for the time being.

Though it may sound redundant, I want to thank so many of you for sending love, strength, energy, thoughts, and prayers my way. I truly find courage in knowing you are out there taking the time to read my blog, thinking about what it might be like for my family and me to go through what we are going through, and wishing us well. The Pinson/Kelly family is a force to be reckoned with!

Love,
Sareana

Radiosurgery: Day 5

Hello Friends and Family,

Greetings from Durham, North Carolina! During my fifth treatment today, I thought a lot about the significance of the word "half." I tried to come up with as many halves as I could think of:
1/2 mile, 1/2 cup, 1/2 gallon, half b-day, 1/2 a dose, half the cost, 1/2 cheese-1/2 pepperoni, half & half, 1/2 caff, 1/2 marathon, 1/2 circle, 50%, half ass, 1/2 portion, half mast, 2\1, halfway there!

Sometimes half is just enough, but in my current situation, the second half is just as important as the first. My next five treatments won't be any easier, but reaching the midpoint is still a significant accomplishment! I'm happy this week's treatment regimen is over and the side effects have been minimal aside from digestive track discomfort. Compared to last time I received radiation, that's nothing! I've been eating well, gone on long walks, been out and about breathing fresh, humid air as much as possible.

My sweet mom, who went above and beyond this week, just departed and an old friend from my study abroad experience in college will come in for the weekend. It is so nice to have all of this amazing support. I also had a dear friend from my summer camping days visit for the night, and had lunch with family members who I haven't seen in decades. Suffice it to say, I feel the love. Next week, my BFF from high school will visit for a night then my "other half" comes in on Tuesday. I've heard some great stories from Erin this week regarding his Mr. Mom duties, and sounds like he has everything under control. I get the feeling the boys are loving their time without any girls around!

Thank you for your continued thoughts and prayers.

Love, Sareana

Radiosurgery: Day 1

Hello Friends and Family,

My mom and I have settled in nicely to our temporary digs. We are staying in an apartment complex that has both short and long-term rentals, which means we have our own kitchen plus a separate sleeping and hang-out space. We walked to Whole Foods to stock up our fridge with healthy items, but the only problem is I accidentally led us astray on the return trip, so we put some extra mileage on our shoes. Not such a bad thing except we were carrying lots of groceries in 80+ degree heat with high humidity. What an adventure already...we had a good laugh!

My first day of radiosurgery went smoothly. During the session I thought about the irony that I should begin cancer treatment in the very moment Alex was standing at the bus stop waiting to get picked up for his first day of school. This would have also been the exact same moment I would have welcomed students into my classroom for the first time at a different school on the other side of town. With my eyes closed, I could feel the energy and excitement that goes in to this special day for a child and a teacher. It was not a sad moment for me, but one of acceptance. I'm okay. This is where I need to be. Today, my job is to get 'er done! One down, nine to go...

Have a lovely week,
Sareana

Part of a Plan

Last Saturday night, Erin took me to a concert at Red Rocks Amphitheater outside Boulder, Colorado. This impressive venue sits embedded in the natural red rock and is incredibly unique and beautiful. Those two adjectives also describe the voice of our favorite music artist, Brandi Carlile, who performed with her band. Erin bought tickets to this concert months ago and he planned on surprising me for our 12^th anniversary, which is on August 23. After my June MRI, he told me about the concert and said he wanted it to be a surprise, but didn’t think we’d be able to attend given the hurricane forming around us. Thankfully, it worked out. If you’d like to take a listen, here’s a link to one of the songs on her new album called “The Eye:”

https://www.youtube.com/watch?v=Wl_eNu4NUVI

On Tuesday, August 11, Erin and I boarded a plane for Raleigh/Durham, North Carolina with tiny parts of my tumor in Erin’s carry-on. That’s right, we hand-delivered my tumor block (paraffin-embedded tissue samples) to a well-regarded neuro oncologist at Duke University. Erin guarded his carry-on as if he were carrying contraband and I, personally, found it odd to be sitting next to my tumor on the plane. The night before we left for NC I had an MRI, which came back without any enhancements, meaning no recurrence was detected since my July 10 surgery. Due to the fact that we have spent a great deal of time this summer researching treatment options, it became apparent that a more recent MRI was needed to serve as a baseline. Needless to say, I was relieved to know that we are still working with a “clean slate.”

While at Duke, we had appointments with both a neuro oncologist and a radiation oncologist, both of whom are collaborating to come up with the best possible treatment plan regarding radiation and chemotherapy. Sometimes radiation is administered before chemo, in other instances that is reversed, and sometimes they are given concurrently. Or a patient might only receive chemo or radiation alone. In 2009, I received 30 sessions of radiation to my head and spine over a six-week period without any chemotherapy. That will not be the case this time around. Certain cancers come with a set protocol, or “standard of care.” However, in my rare circumstance there are no set protocols; there weren’t any in 2009 and there still aren’t any in 2015. For one, I am an adult with a common childhood cancer, so there is not much data on how to treat adults with medulloblastoma, whereas there is a standard of care for children. To further complicate matters, pathology reports from 2015 have not been consistent.

Our first appointment at Duke was with a neuro oncologist who said, “I need more information” before he could prescribe a chemotherapy regimen. Further analyses of my tumor are currently taking place on two fronts:  “molecular subtyping” and “genomic testing." Molecular subtyping will be able to define medulloblastoma in one of four subtypes. Depending on which of these subtypes my tumor falls under, there is a possibility that there may be a particular drug or immunotherapy agent that targets a specific pathway to block cancer cells from propagating.  (Of note, this type of testing was not available in 2009, as it has only been in the last 5 years or so that they have discovered the four subtypes of medulloblastoma). Genomic testing, on the other hand, is different in that it is more specific to my DNA and the DNA of the tumor.  Duke, in particular, wants this information to see if we can tailor a therapy based on both the molecular subtyping and genomic testing. Because it can take weeks for results from both of these tests, doctors on all fronts agree we need to proceed with some type of treatment, and they all recommend some form of radiation.

We were impressed with the people at Duke and comfortable with their initial plan, so I will be going there for the first phase of treatment.  The radiation I will be receiving is called stereotactic radiosurgery.  Radiosurgery does not actually involve any type of invasive surgery. It is a form of specialized radiation that can target a specific area with extreme precision. I am scheduled for ten 20-minute sessions of cranial radiosurgery, one per weekday, beginning August 24 and ending September 4. My mom has arranged for lodging and will be with me the first week, while Erin stays home with the boys. Then they will flip flop and Erin will join me in North Carolina and my parents will take care of Alex and Dean. During this time, I also expect some good friends to visit, which will be a very nice distraction! My radiosurgery treatment will be done in conjunction with an oral form of chemotherapy. This pill is used as a radiosensitizer, which basically allows the radiation to a better job. According to doctors, side effects are reported to be relatively mild and I’m hopeful that’s true. I have a feeling the 20-minute session itself will be the hardest part of my day. The hardest part of my week will be missing my boys. No matter what, it’s good that part of a plan has begun to form.

There is quite a bit of preparation on the part of the doctor and the patient to get ready for radiation. A radiation oncologist determines the precise location in which the radiation beams will target my tumor bed (this involves the radiation oncologist, a physicist, the neuro oncologist, and a lot of other people with a great deal of technical expertise).  I went in while we were at Duke for yet another MRI that gives them a template for the specific areas to target, then went through a “simulation,” in which they mold a mask for radiation itself.  The mask forms tightly around my head both on the back and front, and the mask is then attached rigidly to a table, so that radiation beams can be delivered with utmost accuracy (I had a mask made in 2009 as well). It is extremely uncomfortable and claustrophobic. The making of the mask takes a lot of calming breaths and inner-strength, as does the treatment itself. This is where my mantra to “breathe, just breathe” is very useful. I’ve attached a link from the UC Brain Tumor Center website in Cincinnati. Though I’m not receiving my care there, I believe the website and videos do a good job describing radiosurgery and how the mask is made. If you’re interested, here’s the link:

http://ucbraintumorcenter.com/stereotactic-radiosurgery/

In one of our recent appointments, the nurse joked that I looked so healthy she couldn’t tell who the patient was, Erin or me. She also said that the two of us could possibly earn honorary doctorate degrees given the amount of information we’ve learned this summer about cancer. I am proud of the work that Erin and I have done over the past two months, it has taken its toll in terms of our energy levels and emotional capacity, but we still made room for fun. I can’t say it’s been a good summer overall, but Erin and I have shared many special moments together that would not have otherwise happened. He’s simply the best! My boys have gotten a chance to spend quality time with both sets of grandparents, aunts, uncles, and cousins. They are as happy and full of life as ever! Somehow we’ve all managed to stay in the eye of this hurricane.

Love,

Sareana

P.S. Dean asked me today, “Mom, why do people cry when they love someone?” I couldn’t respond without crying, so I went out on the back porch to have a good cry. Alex and Dean followed me outside and said that they could do a hoola-hoop show for me to make me feel better...it workedJ

Pathology

I’m an observer, I always have been. I especially like observing people. And there’s no better place to do that than on the subway in Washington DC. Erin and I just returned on Friday to Fort Collins from a trip to the National Cancer Institute in Bethesda, MD. After our meeting with a highly reputable neuro oncologist, Erin I decided to enjoy ourselves and leave behind any heavy thoughts of the day. We took the Metro to the nation’s capital. Erin grew up and went to college in these parts, so I had a trustworthy tour guide. We walked down the National Mall, but we didn’t have time to enter any of the impressive, gratis museums that line its path. So, instead we strolled toward the Washington Monument with the U.S Capitol building at our backs. Though I’ve been to DC before and been amazed by its foreboding architecture, it is in stark contrast to the modest and quiet, northern Colorado town in which I reside, where the tallest structure is a seven story bank building. Car horns can be heard honking at every intersection in DC, whereas the blaring sound of a diesel engine rumbling down the train tracks is the norm in these small town parts. There’s no better place than a big city to feel small: to blend into a crowd, to be crowded by thoughts other than those that pertain to the events going on in one's own life. To observe people out living it, living life, this is what I love.

Over the past month, since the pathology report came out, I’ve contemplated my own life and my place in the world quite a bit. The possibility of a life shortened by cancer has been staring me in the face. This summer has been one of sadness, fear, stress, confusion, and frustration for my whole family, but particularly for Erin and me. I turned 39 on July 31, there was no big party, but a celebration nonetheless. Since not being happy doesn’t jibe with my cheerful personality, I’m trying to stay upbeat, but even that can be trying at times. I held off on writing about specifics of my diagnosis because it was unclear to doctors and me what type of tumor they removed. Unlike 2008, when pathology could unequivocally identify my brain tumor as medulloblastoma, this recent tumor has proven to be much harder to diagnose. 

About a week after my surgery in July I was told my tumor was a radiation-induced glioblastoma. You might remember from my previous blog that radiation itself has a rare side effect whereby a new tumor can metastasize in the area where one has been radiated, which is what apparently happened to me. The regrowth was not medulloblastoma, but instead glioblastoma. My immediate reaction to this news: tears. A glio is the worst of the worst kind of brain cancers with a poor prognosis. It’s quite aggressive, grows quickly with an average time period for recurrence of 10 months regardless of treatment. Suddenly, there was little room for the “stay positive” voice inside my head. However, glio, like other cancers can be treated. So, therein began our search for the best possible treatment for glioblastoma.

With this new information Erin and I met with the same radiation oncologist and neuro oncologist that we had met with prior to my surgery in Denver. When pressed for absolute confidence in their diagnosis, they confirmed pathology and discussed ways in which to proceed. Let me pause here to mention that from the onset, regardless of the pathology results, we were planning on getting multiple opinions for treatment options. Also, important to note is that my neuro oncologist in Portland was flabbergasted with this finding and thought it puzzling; he needed to literally see the tumor slides to believe it. (A tumor slide is a sample of tumor that they look at under the microscope). Another neuro oncologist friend of my uncle’s responded incredulously that he’d never heard of this type of recurrence in his thirty-year career. Strangely enough, their reactions of disbelief made me feel better…it gave me hope that CU pathology might be wrong. Now more than ever we needed second opinions. Unfortunately, after getting all of the proper information to a doctor at UCSF in California, she concurred over a phone consultation with CU’s diagnosis. Not what we wanted to hear, but now we had two different doctors and their tumor board teams suggesting it is a glio. My hope was fading, but we remained persistent, we needed more second opinions. Interesting to note here that neither CU nor UCSF requested pathology from 2008 to compare to 2015.

Our new mission (and my uncle’s) was to seek out more opinions from the experts in the pathology and neuro oncology fields across the country. One thing that complicates the matter further is that I have been a patient at three different hospitals in three different states: Arizona (initial brain surgery and radiation), Oregon (MRI follow-up care), and Colorado (second brain surgery). Getting the requisite MRIs and tumor slides to a number of institutions across the country was no small task, but Erin and I have mastered advocating for my best interest and practicing patience. We have navigated our way through a true labyrinth to gather all the appropriate medical records so that doctors have everything they need to take a look at my rare case on paper and under a microscope. Erin, “my chief of staff,” will tell you firsthand that this has been a bear of a project, but well worth the time, energy and effort if it meant, as he put it so eloquently, “you can stick around longer.” Turned out our hard work paid off as we heard some great news from the NCI expert last Thursday: my tumor is a medulloblastoma, not a glioblastoma! There is some irony calling it “great news,” but Erin and I were literally high-fiving over this new development. We were happy because the prognosis for a medulloblastoma recurrence is significantly better than that of a glioblastoma.

So, how could CU get it so wrong? Here’s where things get a little complicated, so if I lose you, I’m sorry! There are a few reasons that explain why there was such a huge discrepancy between CU and NCI. First, at NCI they dug deeper into my health history by comparing pathology from 2008 and 2015. Second, the tumor that was removed in July actually had two parts to it, which made pathology very complex. One part was intracranio (inside my brain), this was clearly medulloblastoma, however, the part of the tumor on the surface (in the tumor bed of my cerebellum) had grade IV astrocytomic characteristics (i.e. glio), which led CU to believe it was a glioblastoma. To further cement NCI’s diagnosis was another top pathologist at Johns Hopkins who concurred with NCI. Moving forward, Erin and I feel confident that the experts are correct. Now our quest to find the best possible treatment for medulloblastoma begins. We know what NCI would propose, and this week Erin and I will return to the east coast to see what they have to say at Duke Medical Center in North Carolina. Incidentally, NCI has been in touch with CU’s neuro oncology team, and now all parties concur with NCI’s diagnosis.

Though CU’s diagnosis put me on an emotional roller coaster and we’re now a few weeks behind schedule in figuring out a treatment plan for adult medulloblastoma recurrence, I feel very fortunate that we have the resources and support (both tangible and intangible) to be able to seek out second opinions and be active participants in my health care. I appreciated this comment from the nurse at NCI in a post-appointment email: “You two are doing an incredible, respectable job navigating through this!!!”

Over the past four weeks I’ve become more introspective, feeling a bit like I’m in no man’s land, a bit lost. However, I’ve never lost sight of the fact that I’m still Dean and Alex’s mom. In a way, this delay in treatment has been a positive thing because it has allowed me to have additional time with my boys this summer to feel “normal.”   When we returned from DC, Dean asked me, “Mom, did you get your medicine?” Throughout this process, the two people I love observing the most are my boys and their innocence in all of this.

Love,

Sareana

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

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