Before I was blessed enough to become a stay at home mom, I was a fourth grade teacher. I would often tell my students to open their journal and 'brain dump.' The reasoning was that by writing down whatever came to their mind they could become inspired to write about something, or clear their mind for another great idea to enter. As I process all of this information, I feel the need to brain dump, to get my thoughts out on paper (or rather the computer screen). I need to clear some space.
As I reflect on the past week, I can't help but wonder how on Earth I made it through. I know I had a marvelous support team, but elephant after elephant just kept sitting on my chest. I wasn't sure I was going to be able to get up. Being exhausted, physically and emotionally, led me to do a few things out of the ordinary. In a rush to get to the hospital one afternoon, I slid on two shoes. Albeit, very similar, I fount myself walking into the hospital on surgery day with one navy shoe and one black with holes on the toe. Aside from the slight height difference, I didn't care a bit. My mind was in a different place. Also on surgery day, I brought my breast pump, as to keep up with my youngest. I asked the nurse at the Day Surgery counter if there were a room I could use. She made a call and sent me up to Labor and Delivery. My sister and I headed upstairs. Another nurse directed us to the lactation department. We walked down yet another long hallway only to find the lactation department a ghost town. Seriously, people, all I needed was a small room and an electrical outlet for ten minutes. I gave up, plopped myself down in one of the lobbies, found a plug-in, and got the job done. I was beyond caring about modesty.
While making several trips to the hospital over the course of five days, I frequently listened to the radio to help drown out the noise in my head. A local radio station was doing a fundraiser for the Children's Cancer Association (CCA) for the last two days of my commute. I tried to listen when I could, but would find myself with tears streaming down, feeling overwhelmed. My older sister had mentioned to me while waiting on surgery day, that although this journey is horrible, awful, and just plain sucks, it would be far worse if we had to travel this journey for one our our babes. I agreed. The CCA has inspired a need and want to help in me. Once my life is settled, I am going to seek out a way to give back. We have been showered with love and support and I want to give the same. If not the CCA, then another cancer fighting organization, support group, patient, something.
While in the hospital with Patrick we received news that one of Patrick's best friend's wife had learned she has skin cancer. It's an epidemic and pandemic. It's a horrible disease that needs a cure. Before our diagnosis, cancer was not so prominent in our lives and we took for granted our health and monotonous journey. Phone conversations with family and friends reveal how many people are really affected by cancer. It doesn't seem right.
I am exhausted. My youngest is still sick and through all the shuffle last week, she did not get her probiotics. Our children have belly issues and probiotics have rescued us through the years. She has been up, aside from a few hours, each night with belly pain. She didn't want to be set down, sleeping or awake. She'd arch her back in pain. Between that and coughing, it was a disaster. It is a disaster. Now, three days back on schedule, she will allow me to lay her down so she can put herself to sleep once again. I think we are back on the right track, but it hasn't been fun getting there. I'm very sleep deprived, irregardless of the naps I'm able to get in the afternoons thanks to my sisters.
Patrick and I have lost seven pounds each over the last week. My weight loss was needed but unintentional. It's difficult to maintain your eating schedule when you're sitting with someone who can't. I didn't want to be all out rude and chomp down on a delicious sandwich in front of him. Early on when I'd leave for a meal break, he'd be upset that I was gone so long. Patrick's doing well with eating, considering. He's moved on from liquids and soft foods to more solids and regular foods. He's becoming more adventurous in his eating and has tried oatmeal, scrambled eggs, homemade macaroni and cheese, and minced bits of chicken. No where to go but up from here. Once he's back full force, I'll get him back to his pre-surgery weight. It's my mission.
It's odd how our relationship changed, Patrick and I. We were husband and wife and for the last week became nurse and patient. When we said our vows nearly five years ago, I said I'd be there for better or for worse. I was there for the worst. I became his second nurse. Other than pushing meds in the hospital, I did everything else. Once home, I took on even that job. I'm happy to do it, but it's been tough for Patrick to rely on me for so much. He's mentioned he feels like a baby. Showering, eating, changing bandages, coughing, using the bathroom, dressing, everything requires help. Each day he gains a little more independence, and I become more of a wife than a nurse.
I've been wearing Patrick's wedding ring since the night before surgery and will continue to wear it until he's able to again. His left arm is bandaged from the flap removal site and he has many sharp pains running in his arm and fingers throughout the day.
Patrick's speech is a bit slurred, as expected. He was able to keep the tip of his tongue which helps tremendously, but there is a rather large bump in the back which makes it difficult to speak clearly and maneuver food while chewing. Dr. C. told us today that his tongue is still a bit swollen and the bump should continue to go down. Patrick also has a flap of skin near the front of his tongue that is white in color and was a bit concerning. We were told it would slough off eventually.
I have a lot more in my brian, but it will be saved for another time.
