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