We set goals in our journey through life, and charge with purpose until we achieve them. In our path we keep adding milestones, brought up by life; that all powerful force that claims we must rise to every challenge. But what happens if we leave that life token aside and dedicate that time just to sit with your inner self and chat. I have told so many mothers as I discharge their NICU graduates to make sure to follow up with their own health needs as “mom needs to be healthy to be able to care for her baby”. I just never said that to myself once I became a mom.I was compliant with my breast screenings as much as any women undergoing treatments for infertility would. All that came to a halt when my beautiful son arrived at 6 months of age, giving me the right to claim the title of the only profession I ever declared as a child – Mom. Since his arrival everything changed, as it should. But by focusing on his needs, I neglected my own. Had it not been for the spending money we would receive from the reimbursement for my cancer screening, I might not be here today. We have not completed that trip to Disneyland but have traveled beyond magical places at the happiest place on Earth.I look back at my life as travel albums. We now keep these images in digital folders, available for access at any time as needed. There are some folders I go into because they remind me of times spent with travel partners. I am grateful for those who have been part of my crew, even more so of those who have stayed aboard. My health journey has been filled with challenges since early in life. This made my mother feel confident that I would beat this just like everything else. I look at the folder that holds the images of the event that led to the Aha moment. The electrochemical discharge that allowed my brain to register my recently acquired qualifier. I am sure that the event has been a pivotal point for many, but the moment I sat in that leather reclining chair, anticipating being hooked up to my chemotherapy infusion was when I processed that image. I had seen that picture many times before, but with me playing a different role. I had provided comfort and support to patients and caretakers in need, including members of my family that belonged to the club I joined in 2013. As a member I was surrounded by fellow patients who shared stories about their diagnosis, treatment, and mundane life events. I entered the room still seeing them as “the other” but the moment that needle pierced my skin I drew the picture for the new entry in my health journey album with the title “I am and forever will be a cancer patient”. Before that day I had overcome the challenges of leaving things aside to complete my diagnostic process, initiated hormonal treatment, and completed the surgical intervention that was expected to be curative in my situation. I had even brushed the border of transition to another form of energy. I remember that rainy day when a friend who was visiting after my post mastectomy drainages where removed. She feared hurting me as she closed the new support bra I needed to contain the hemorrhage that had spontaneously emerged as I was eating a bowl of delicious cinnamon cereal for dinner. She followed me to my room when she saw that the warm fluid, I felt running down my side was too red to be “just fluid”. As a physician I knew I was in danger once the tiny wormy vessel started shooting a high-pressure stream of blood that reached the bathroom vanity as soon as I removed my bra. I remember telling my friend “don’t worry about hurting me, if we don’t put pressure on it I might die”. Since then, we always joke that we are truly blood sisters. I left my “successful recovery” album behind, feeling cold and wet due to the tropical rain that was responsible for her staying late in my home. I remember that once I reached the car, I started telling my husband to make sure my son knew who I was. Surgery had taken cancer away. The small vessel that decided to direct my attention to the fact I was “the patient” almost took my life. I even had issues accepting the patient role during my emergency surgery, a fact my plastic surgeon shared with my husband as I was telling him how much I loved my surgeon. My husband responded that he would not be jealous because he was sure it was the anesthesia talking. Dr. Toro responded that I was only given deep sedation, which allowed me to keep giving him instructions during the procedure. I went over every detail in my mind thinking what I had done wrong. Still my GPS continued re arranging the route around the fact that I would need to fill the box of my new chronic illness in every form moving forward; that undeniable fact did not hit home until the club at the infusion room welcomed me to their conversation.
I made it a point to take charge and responsibility of my health journey, with an excellent team of facilitators to support me in the process. The decision to place me in the infusion room was made jointly between me and my oncologist, based on the evidence provided by the genetic testing performed to the misbehaving tissue once removed. Other storms ensued along the way. At the time and to this day I have been fortunate to have chosen a group of peers that are open and up to the task of bringing their expertise to propose the best route, while willing to re calculate as needed. Specially to accommodate the needs of the one person who will carry the weight of the result of any decision, me. But there is a heavy weight that comes along with being that patient. Taking a principal role in the decision-making process caries the responsibility of being the captain at a time when you might need to allow yourself the space to be vulnerable. At the end of the day, having my vulnerability shine is something I have been known for all my life. As a child my siblings would call me “mantequilla en palito” because I would cry when faced with emotionally charged situations. As an adult I know that having the strength of being transparent about your humanity is different from allowing yourself the grace to be human. And human we are, we make mistakes, we grow, and yes we get sick and learn to be patient. We might even be threatened to be tied with a pashmina to force us to be still if we fail that lesson.
I am Maribel Campos, Mario’s mom, Mrs. Santiago, la nena de Pepito y Puruca, a driven, empath, who has difficulty letting go. I still get anxious when I schedule my medical appointments, fearing what might be found. I try to take care of myself, although that plan is not evident by my agenda. That is a work in progress that made me realize that all my projects would require multiple lifetimes to fulfil, thus comfort in engaging others and enjoy watching them set sail on their journey. And yes, I am a cancer patient that will pardon myself every time I fall and rise stronger every time, enjoy the breeze, the laughs, the snores, and the joy of my health journey.
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