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