If you haven’t read the previous installments start here.
The following morning Jeremy spent with Blake in the nursery. It was hard for him to divide up his time between me and the baby, since Blake was not allowed to be in our room without a nurse from the nursery with him. And if you know the schedule of a nurse, you know how difficult it is to find time to be able to do that. So while Jeremy was tending to the baby I decided it was about time for me to get cleaned up. The nurse’s aide offered to help me wash but I thought I was capable of cleaning myself up in private. She left me with a tub of warm, soapy water, a pile of washcloths and a clean gown. I started scrubbing myself down. It felt heavenly to get some of the sweat and grime and remnants of surgery off of my body. What I didn’t realize was how exhausting it would be. It didn’t seem like it would take so much effort to just wash off my body. I felt pretty wiped out.
And for some reason I thought that sitting up in a chair was a good idea. I mean, as a nurse I always pushed my patients to get up and out of bed as soon as possible after surgery. It lessens the chance of complications and accelerated the healing process. The CNA graciously helped me maneuver to the chair that was next to the bed and proceeded to change the sheets and then left me to check on some other patients. After about 10 minutes I started getting an awful pounding headache and realized what a bad idea it was to do so much so quickly. I watched the clock trying to push myself to hold out for another few minutes. But I quickly gave in and pushed the call button to get back in bed. That hospital bed never felt so good.
As I lay back in bed trying to close my eyes and rest after such physical exertion, there was a knock at the door. You quickly realize as a patient that you have no privacy and hospital staff can come in whether they are invited to or not. The knock is just a formality. They WILL come in. A woman came into my room identifying herself as a social worker. Internally I rolled my eyes because I really didn’t need a social worker, or at least I didn’t want to talk to one right now. After trying to make small talk for a little while she says, “it must be hard having a new baby and a new cancer diagnosis.” I guess it really hadn’t sunk in that I had CANCER and all the difficult treatment and lifestyle changes that would follow. I hadn’t really comprehended that the diagnosis was really bad and my chance for long term survival was really low. But at that moment, it hit me like a ton of bricks. I just started crying and sobbing uncontrollably. I thought about potentially undergoing chemo and how damaging it is to the body and the mind as well as the strain on the family and relationships. And then I started thinking about dying and leaving my kids to grow up without their mom and it broke my heart. Maybe the fact that I was physically exhausted contributed to it. And that Jeremy wasn’t there to be my emotional rock. But I couldn’t stop. I must have made the social worker feel awkward because she quickly excused herself and said she’d come back later. I felt an urgent need to have Jeremy by my side to talk me out of it. I quickly called him and told him he needed to come to my room. He worriedly asked why because he could tell I was crying. “I just need you here,” I said. He rushed right up. He climbed into bed next to me and just held me while I cried.
At this point I really needed a visit from some friends that would lift my spirits without being overwhelming. I didn’t request a lot of visits at this time but I called my friend Carol to come by. She and her family became good friends of ours during this time. She had even come over and cleaned my house for me during the last few weeks before the surgery. She and her husband, Travis, and their daughter, Alyssa, came later that night after I had been moved to the postpartum unit. (Yay! I was finally able to have my baby in my room with me and hold him whenever I wanted to!) By this point I had a terrible headache which I’m sure was related to the crying I had done earlier as well as the time spent in the chair. They stayed for an hour or so. Alyssa held Blake as we all chatted and joked around. Their visit came as a balm that night. Just being in the comfort of good friends who love you and treat you like a person instead of a victim was soothing to my soul that night. After they left I was able to relax enough to fall asleep.
The next day I was more somber as the reality of my situation was sinking in. I must have started to get a little depressed because I was becoming less hesitant to meet the goals necessary to get me discharged. I didn’t really want to push myself to get out of bed and sit in a chair or go for a walk. I really just wanted to hang out in bed and cuddle my sweet precious baby. It was so nice to have him and Jeremy in my room with me all day. I was able to hold him when I wanted. It was usually only for about 15 or 20 minutes before my arms were so tired and weak that I couldn’t anymore. I think the staff was catching on to my laziness and took out my catheter so I had to actually get up and walk to the bathroom. Dang it! It hurt so much to sit up. I had to press a pillow hard against my incision because it felt like I would split open every time I used my abdominal muscles. And it is amazing how weak your body becomes after sitting around for a few days and how hard it is to have to rely on someone else to help you to the bathroom.
That evening, while Jeremy and started watching a movie together, the nurse came in and explained that my IV was outdated and I needed a new one. It seemed like no big deal. I have always had pretty good veins and there has never been a problem getting an IV or blood draw. In fact, I used to let the brand new nurses practice putting IVs in me when I worked as a nurse. So the nurse pulled out the old one and proceeded to start a new one. She missed the first time. She missed the second time. And it’s not like she just poked the needle in and realized she missed and pulled out. She wiggled it and pulled out partway and shoved it back in pricking and poking tendons and nerves. I could tell she was frustrated and she apologized as she left to find someone else to try. She brought in the IV specialist to look at my veins. By this point I was started to get annoyed. I was missing my movie and all the poking was started to unnerve me. He began to lay out his great idea: I should just get a central line so that I wouldn’t have to keep getting IVs and the potassium that I needed to get through the IV wouldn’t irritate the veins going in. And although he didn’t say it, I knew he was also thinking about how it would also be convenient to have if things took a turn for the worse considering my condition or to start chemo if that was the next step. I was feeling pressured by these nurses to get this central line. After having been a nurse and seeing exactly how a central line is put in and the potential risks of one, I knew I really didn’t want one. At all. And I was getting frustrated by the pressure being put on me. So I started to cry. I’m sure hormones were part of it because I’m really not that emotional. I surprised myself too. But I couldn’t help it. I was really feeling the helplessness of my condition at this point. Once again, I made the staff feel awkward. They all left the room to give me some time to get myself together.
In the mean time they called Dr. Wingo to get the order to start the central line. The IV expert came in the room and said that Dr. Wingo wanted to talk to me personally about the central line. I was relieved. I trusted Dr. Wingo and at this point I felt like she was a friend. She told me she heard that the nurses wanted to start a central line. “How do you feel about this?” she asked. “Tell me how you really feel.” I told her flat out that I didn’t want it. I didn’t feel it was necessary since all I really needed it for was to get the IV potassium and magnesium. I tried to keep my voice from quivering and to hide from her that I had been crying. It didn’t work. She could tell that I was still a little emotional. But she told me that she didn’t think I needed it either. Maybe at some future point I would need a port, but we didn’t need to decide that right now. She was a little irritated that the nurses tried to pull this on me. I felt relief wash over me by the time our conversation ended. Man, I sure do like that Dr. Wingo.
Realizing that the postpartum nurses weren’t trained to take care of oncology patients, Dr. Wingo had me transferred back to the oncology floor where she trusted that the nurses there were better able to handle the idiosyncrasies of my condition. Once again the Chucky and his babies trumped my baby. It was a little of a let-down to not have Blake in the room with me… again. But the hospital staff discharged Blake since he had completed his standard hospital stay and had no health issues. They left him in the hospital crib on wheels and provided us with as many diapers and as much formula as we needed. The nursery staff really took care of us. I’m sure Jeremy had schmoozed all the nurses down there. One of them actually talked to a formula sales rep and got us a bulk order of organic formula. They even let Jeremy and Blake sleep in an empty room on the postpartum floor for the remainder of my stay since they had several vacancies.
As my mobility increased, I began noticing more pains. I specifically noticed a pain on my lower anterior right abdomen. It was a sharp pain that worried me. I felt it especially after getting up and back into bed.
The next morning Dr. Wingo came by on rounds. She had an update on my cancer. The pathologist determined that it was uterine in origin. There were two possibilities that this cancer could be: leiomyosarcoma or endometrial stromal sarcoma. The leiomyosarcoma is a slightly more common cancer than the ESS, but it is more difficult to treat. The current treatment for that type of cancer is chemotherapy without curative results. The endometrial stromal sarcoma is more rare but has hormonal markers on the tumors. This means that hormone therapy would be a likely treatment option and not chemo. I wished I could vote for the type of cancer I had. Dr. Wingo said we should pray that it is the second type.
At this point I had spent 5 days in the hospital. While it was nice to be in my own little bubble with Jeremy and away from cares of real life, hospital food was getting old fast and I could really do without the middle of the night and early morning interruptions for vital signs and blood draws. I was slowly becoming more able to get myself in and out of bed on my own and even managed a shower by myself. Oh, that was heavenly. Dr. Wingo asked if I was ready to go home. There was no real reason that I needed to be in the hospital. I was no longer connected to any tubes, my JP drain had been removed, I could move on my own. But, I hesitated. I thought about my 4 high-energy, rambunctious kids at home and although I loved them and missed them, I wasn’t ready for them. And mentally I still needed to hide in the hospital bubble while I wrapped my mind around what was happening.
Jeremy and I talked a little about treatment options. He was very adamant that I wouldn’t do chemotherapy. We have all seen what happens to those who go on chemo: the loss of hair and weight, the hollow eyes, the nausea and vomiting. It is scary to watch people go through that, especially loved ones. They don’t look like themselves anymore and they don’t have the energy to do anything. I wasn’t very keen on the idea of chemo either but I didn’t want to completely disregard it if it was the only option. And I hadn’t heard of any other options besides chemo and radiation, and now this new “hormone therapy.” As I thought more about it, I really started hoping and praying that the hormone therapy would be the treatment option for me.
By day 6 Jeremy was really getting cabin fever. Dr. Wingo came in to check on me. I had started noticing a sharp pain in my lower right abdominal cavity every time I got out of bed. Nonchalantly she tells me she’s not surprised. She said that during the surgery there were tumors attached to the abdominal wall at that location that she had to slice off with a knife like she was peeling an apple or an orange. Inwardly I cringed at the image of her carving my insides like a piece of fruit. She asked if I wanted to try a stronger pain medicine to cover it. I said ‘no,’ but she ordered some just in case.
She asked if I was ready to go home today. While I still wasn’t looking forward to the chaos that I knew waited at home, I also knew I couldn’t hide out in the hospital any longer and it was time to face the world. My parents assured me that they would stay at my house and help with the kids as long as we needed them to and that I could lock myself in my room to rest and recover. That definitely eased my mind and helped me decide to be discharged.
For the next installment go here