If you haven’t read the previous installments of the story go here
Before she left my hospital room for the last time, Dr. Wingo asked for my permission to have my case presented at a gynecological oncology conference at a nearby hospital to get some more professional opinions on how to proceed. I happily agreed. I could use many different sets of eyes to look for any plausible cure. Although she seemed unsure as how to proceed, at least she wasn’t giving up.
It took longer than expected to actually get the paperwork to sign and be discharged. The social worker had to come and check in with us and give me all the packets that are a part of a new cancer diagnosis. These packets include information about support groups, what to expect with chemotherapy, and websites to peruse with your questions. I put them in the pile without even looking at them. I wasn’t ready to think about that yet. I was still holding on to the hope that my particular cancer wouldn’t need chemotherapy.
The drive home was a long one. Because the discharge was so long, it meant that my last dose of pain medication was nearly 4 hours ago. The aching abdominal pain was growing stronger and I curled up further into a fetal position, pressing my pillow up against my belly to support the incision. I don’t remember what we talked about. Probably some small talk to try and divert my attention away from the pain. Jeremy probably made a few lame jokes that I could only smile at. We made sure to stop off at the nearest Walgreens on the way home to fill my prescription for pain medication. We finally pulled up to the house and I pried myself out of the car carefully as to not jar the incision. Our neighbors from Alaska happened to be in town at this time and came over to the car to share their concerns about my health. They were so kind and helpful. I really wanted to talk to them, but I really needed to take the edge of the pain and standing was quickly becoming unbearable. They must have been able to tell that I wasn’t feeling well because they excused themselves promising to check in on me again soon.
It was a sweet scene when I opened the door. My parents and the kids were gathered around the television watching a show. When they noticed I was home they all jumped up to give me hugs. Jeremy made sure that they gave me some space while he rounded up a glass of water to take my pills. The kids made some space for me on the couch and ran to go gather up all the pictures that they colored for me that said “I miss you” and “I love you” written on them. Although I winced every time they touched me, they were welcome hugs of affection that I truly did miss while I was gone. I didn’t have the heart to tell these kids that hadn’t seen me in a week that they had to stay away from me. I would rather just deal with a little added pain so that they could sit close to me and know that I still loved them and wanted to be with them.
They were also so excited so see their brand new little brother that they had heard about but not yet seen. I think the older kids were disappointed that they weren’t able to come visit us at the hospital like they did with the other babies. They gathered around my mom as she held little Blake and touched his sweet face and helped to feed him his bottle. They enjoyed rummaging through all of the gifts that we received at the hospital for the baby. We truly were blessed with many beautiful baby outfits, flowers, and other baby paraphernalia while at the hospital. Many dear friends came to see us and shower us with love and gifts. They were another blessing to help keep my mind off of the stark reality of my situation.
Adjusting to life at home after major surgery proved to be a bit difficult. While it was comforting to be around family and away from the constant interruptions of the hospital, my home was not designed for recovery from major surgery. Walking up and down the stairs was painful. Sitting up at the table to eat was painful. Sleeping in my bed was the most painful. I guess I could have just hid in my room to lessen the exposure to painful stimuli, but after seeing the excitement in my kids eyes at having me home was worth spending my time out on the couch. I guess deep down I still wanted to be a part of the life going on around me. I wanted to see my kids play (and fight) and be there to talk them through it all. I wanted to talk with my parents and update them on all that happened and all that we had learned about the cancer and our treatment plans. And I wanted to be where the baby was and just hold the sweet boy as long as I could. There is something about holding a newborn baby that is just magical. Looking into his precious face made me to forget for awhile that I was facing a terminal diagnosis and allowed me to just think about being a mother for that moment.
One of the prescriptions I came home with was for Lovenox. This is a blood-thinner commonly prescribed to post-op patients to prevent blood clots. The discharging social worker asked if I needed a home health nurse to come by every day to give me my shot. Since I had given many Lovenox shots in my days as a nurse I declined. People give themselves shots all the time, although I personally had never given myself a shot. But it can’t be too hard, right? The first night home I pulled out my first syringe of Lovenox. I used an alcohol swipe to clean the area on my butt where I would inject it. I took a moment, okay maybe a few minutes, to psyche myself up for it. It’s not that easy to just stab yourself with a needle and inflict pain upon yourself. At least not the first time. I finally stabbed it into my butt, pressed the plunger, and pulled it out. Man, that hurt! And the pain didn’t subside soon after either. It lingered for over an hour, or maybe more. I definitely was not looking forward to the next one.
I had started my new nightly routine to get to bed. After the normal brushing of teeth and washing my face I now had my shot to give myself. Ouch! Done. Then my pain pills. While I didn’t like the idea of being so reliant on them, they truly are necessary to overcome the pain to be able to recover. Then I had to wrap my abdomen tight, but not too tight, in the abdominal binder they put on me after surgery. This was one of my favorite presents I came home from the hospital with. I felt like it was holding all my innards inside of me. It supported those muscles that were cut open in surgery that had not yet healed back together. While I was going through my routine, Jeremy was playing “mommy” for Blake. He had already adapted to this new role in the hospital so by the time we came home he was a pro. He had the diaper changed and the baby fed and asleep in bed by the time I was ready to go to sleep. Jeremy even had Blake sleeping up to 6 hours each night! But I guess he was our 5th baby after all. We learned from the previous 4 just what the best method was to get a baby to sleep for longer at a younger age.
When we both were finished, we resumed our nightly ritual together of kneeling together in prayer. I think these were some of the most purposeful and fervent prayers we have said, as a couple and individually. They consisted of pleadings for guidance to the best form of treatments that would allow me to be a mother to our children and raise them up to God. Jeremy had so much more faith than I did and was able to say that “not my will but thine be done” essentially. He knew that God knew what was best for us and that He would take care of us no matter what happened if we were being obedient to His commandments. That is a hard philosophy to maintain when your life is on the line. I knew deep down that he was right, but I had to lean on his solid rock of faith while mine wavered. Jeremy has always had this attitude toward life and it has always amazed me how calm he can be when life gets crazy. I tend to always think of the “what ifs” while he assures me that everything that happens is according to His plans and we will be taken care of. It might be hard at times, but He will give us a way to accomplish His will.
As I said before, sleeping in bed was awful. I had become accustomed in the hospital to sleep on my back with the head of the bed elevated and my knees propped up under pillows. I discovered that this was the position with the least amount of pain so that I could sleep for a few hours at a time. Normally I am a side-sleeper so this new position was hard to get used to. So when I came home to my flat bed I tried to assume my previous side-sleeping position. Oh no, no, no. My incision screamed with pain. Not working. I did my best with all the pillows we had to imitate the elevated head position and elevated legs position. It wasn’t perfect but it was better than on my side. It was good enough to allow for a few hours at a time.
One morning, a few days after returning home, I awoke with a sharp pain on the right side of my chest that intensified as I tried to sit up. I knew this wasn’t normal. I had not had this type of pain while recovering from surgery and any new pain is scary. My mind started racing through the possible reasons. A new tumor? A Pulmonary Embolism? None of the scenarios sounded good. I started to panic and was trying to decide what I should do. I knew I should call Dr. Wingo, but I hesitated. I knew she gave me her number for reasons like this, but I don’t want to be a patient that takes advantage of having quick access to the doctor. I finally called and left her a message. While I waited for her to call back I decided to really analyze the pain. Where exactly was it located? What made it worse, movement or breathing? As I was trying to figure it out she called me back and she talked me through the symptoms. I told her that it originated on the right lower side of my chest towards the front. We determined that it wasn’t a PE, which was a tremendous relief. As we pinpointed the location she said that she did a lot of scraping off of tumors up on the diaphragm above the liver. That seemed to explain the reason for the pain and I was relieved to know that it wasn’t something more serious and that it would go away as I continued to heal. But every new pain starts a new set of worries about the cancer returning and growing.
Showering has always been a place for me to ponder events, plan for my day, and evaluate feelings and emotions, and just philosophize about life. I’d get the water going as hot as I could stand it and just sit in the shower and wonder how all of this was happening to me. I was opening my heart to God and asking, “why did I get cancer? I have been doing everything I could think of that was asked of me: I was going to church every Sunday, I was saying my prayers morning and night and with my family, I was doing Family Home Evening, I was reading my scriptures every day, I was serving in my calling at church and helping those around me.” It felt pretty unfair. And I started thinking about the cancer. It sure did spread quickly and it was pretty advanced when they found it took it out. But she didn’t get it all. How fast was it going to grow back? How much time did I have left? How old would my kids be when I died? Would I be able to see them grow up? Get married? Go on missions? Graduate from high school? Date? Drive? Get baptized? Would I see Blake walk? The sadness and grief started welling up inside me and the tears started to flow. The tears turned into racking uncontrollable sobbing. I sat there in my solitude just letting the emotion flow. It was heart-wrenching. But it was my time to break down and put away the brave face for a few minutes every day. I reluctantly left the shower and wiped away the tears and gathered my emotions together and got ready to face the day.
There is something about getting myself ready and putting on make-up and doing my hair for the day that gives me a sense of purpose for the day. And it gave me time to hide the fact that I had been crying. I wasn’t ready to tell the kids about the gravity of the situation yet. I wanted to feel like life was normal for them for a little while longer and let us enjoy the new little baby. I think I went through this ritual every day for a few weeks.
For the next installment go here