Delicate

 

    So many thoughts run through my head these days. I don't even know how to quantify them, other than to say it's easily in the hundreds of thousands. Some days the majority of them are positive and upbeat. Other days they are morose and scary.

    This time of the year is always one of cautious hope for me with the changing of the temperatures, the impending transition of the leaves, and the subtle reminder we're all about to tuck in and lose our abounding freedom from the summer. Yet, this time of year is also historically filled with the worst moments of my life. When I reflect upon the Septembers, Octobers, and Novembers of my thirty-six years on this earth, they contain the paragraphs and chapters filled with the most heartache. The one exception is that Jeff proposed one October...but I'm not exaggerating when I say that is the only paragraph that is positive. 

     A third of the way into 2020's shitty triad of months is no different from any other year. Attempting to balance my own work while my children attend virtual school is laughable. I am struggling as a mother. I am majorly struggling as a wife. I will not be surprised one bit if my husband decides he wants to leave me and find a better partner. If my family was on Survivor, I am confident I would be deemed the weakest link and voted off the island. And I really can't say I would blame them.

    I find myself retreating into literal corners of my home in order to sit with my emotions. I am still undecided on whether or not this is helping me or hurting me. My primary emotion these days is frustration. Not frustration with others, but frustration with myself (which, unfortunately, does exhibit itself as frustration with others). The fact that the one year anniversary of my diagnosis is coming up just adds to all my feelings. Compound that with Breast Cancer Awareness month in less than a week, and we now have a recipe which includes sadness, anger, frustration, and a whole lot of pink. Trust me when I say this recipe does not taste good.

    Part of my frustration stems from the fact that most people define cancer as needing IV chemotherapy. While this is true, it is only one small part of most people's treatment plan. Perhaps people view IV chemo as the worst part since the side effects are more visible. I'm here to tell you chemo was, emotionally, the easiest part of my treatment. It involved weekly doctor's appointments where I found out if the tumor and lymph node were shrinking. I knew my weekends were going to be great because I was pumped full of steroids. I knew I had an upcoming surgery to remove the diseased tissue. I then knew I had radiation after that to kill any residual disease from armpit to armpit, and my collarbones down to right above my stomach. And finally, I knew I was going to take Xeloda, a pill form of chemotherapy, for six months to attack any potential rogue cancer cells floating around in my body that could find their home in another organ and deliver me a terrifying Stage IV diagnosis. 

    Radiation was not easy. Radiation involved my skin turning various shades of brown, and my armpits looking like they belonged to Whitney Houston. It involved slathering myself with Aquaphor and sleeping with a fleece blanket tucked under my breasts and armpits because any friction was horribly painful. Most days I would come home and nap for several hours because I was exhausted. I still have residual discoloration on my collarbones from my treatments. I'm told it will eventually go away, but I now find myself choosing not to wear certain shirts because it exposes the marks. 

    I'm now in the Xeloda phase and, it too, has not been easy. Easier in some respects, but not others. Xeloda is chemotherapy you all. Just because I still have hair on my head, don't require being pumped full of steroids, and don't have an immune system that is at risk of contracting every possible illness does not mean I don't have side effects. It's not like I'm popping eight pills of Tylenol each day. I take this medication two times a day for 14 days, then I have 7 days off. This is one cycle. I will finish my active pills of cycle two tonight, and then have my off week next week. I will do this for six more rounds. 

    Cycle One of Xeloda was fairly easy. I had some occasional fatigue and stomach issues, but nothing severe. Cycle Two has proven to be a bit more challenging. I will be going along and minding my own business when all of a sudden I will have horrible stomach pains that require me to quickly run to the bathroom. I'll spare you the details, but let's just say I didn't know one's body could produce such nauseating aromas. This happens several times a day. 

    I have no appetite, but need to take my medicine with food. So I am constantly in the mental battle of knowing I need to eat whole foods, but instead grab a protein shake or banana to take with my morning medication. Then I won't eat for the rest of the day. Dinner rolls around and I'm still not hungry even though I haven't consumed any food in nine hours. 

    Cycle Two also brought the beginning stages of hand-foot syndrome. I had a touch of this with one of my AC chemos, so I was at least grateful to know the symptoms. I got out of bed on Thursday morning and as soon as my feet hit the floor I knew the syndrome was beginning. This syndrome is a skin reaction that occurs when a small amount of the chemo leaks out of capillaries in the palms of your hands and soles of your feet. When the medication leaks out, it can damage the surrounding tissue. My feet felt like I was walking on hot coals and they were tender to the touch. My palms also had a nice rosy appearance to them, but luckily they were not painful. I had an appointment with my oncologist that afternoon, and she's now reduced my dose from 4000 mg a day to 3000 mg a day. I'm hopeful that my upcoming off week will allow the symptoms to disappear.

    Perhaps the mental side effects are the worst. I cannot remember things. I feel like a squirrel on a hamster wheel; constantly distracted and making no progress on things I need to complete. I hit my lowest moment this past week when Jeff and I were in the middle of a conversation and I truly could not follow what he was saying. If you want to have your confidence stripped from you, experience being berated by someone you love for not being able to keep up with the words coming out of their mouth. It will leave you a changed person. 

    I really think I'm just sad. Sad about the upcoming weeks. Sad about the changes that have happened to me. Sad that people just don't understand what I'm going through. But especially sad that I don't feel like I have anyone to talk to about all of this except my mom and my friend Krissy in Texas who is also going through breast cancer. But even so, they're not here, like present in my home. 

    Couple this with the fact that I don't want people to treat me any different due to my diagnosis. Cancer is a cluster. I just wish I could have a color system or something so people knew how to approach me each day. Reds, oranges and yellows would mean, "Stay away - I'm either sad or angry today. But I'd still like you to talk to me and treat me like I'm normal." Blues, greens and purples would mean, "I feel normal. Let's pretend this cancer diagnosis never happened." Truthfully though, some days I would need to wear red at 9:00, then change into green at 10:00, and then into orange at 4:00. 

    I realize the words in this post are not uplifting and motivating...but these words are my truth. I have been positive for probably 95% of the last eleven months, and I'm allowing myself to feel the 5% when it pops up. My positivity rate may be dropping into the low 90s for the next little while, but that's ok. It's just so important to know that this diagnosis doesn't end when IV chemo and surgery are over. This diagnosis will stay with me like an emotional scar forever. It's not visible to others, but it's there. Some days something will occur to rip it open and remind me of all the disappointments and sadness I've experienced. Other times it will stay shut for weeks on end. I have faith that with time the emotions will begin to lose their power, but for now they are very raw and real. I know you don't have the same perspective I do, but please be gentle with those of us going through this diagnosis. We are so delicate, even though we may appear fine on the surface.