I made it through the end of the weekend before last and that Monday feeling great physically, only dealing with the continued shedding of the stubble that remained on my head. I had been increasingly anticipating my labs and follow-up appointment with Dr. Park on Tuesday hoping that I would gain something concrete and more than my unfounded estimations of my response to chemotherapy. Since my first infusion, I have obviously monitored and tracked my side effects and continued to feel the affected nodes in my neck trying to detect change in size, all the while understanding that those things are not a real indication of how responsive my cancer is being to the chemotherapy nor do they predict the success of my treatment or my prognosis. I had done these things as a coping mechanism of dealing with undergoing treatment and giving myself an active part of advocating for myself and participating in treatment instead of just being treated. I know that there will be no conclusive determination until I have the PET and CT scans and blood work on April 2 what my cancer’s responsiveness to chemotherapy no matter how much I monitor and report. Regardless, I continually strive to focus on maintaining my health and focusing on numerous positives in my life and on logical and scientifically-based estimations that R-CHOP will work in four to six rounds.
On the night of Monday the 23rd, I had many shining, positive points: I was coming off of a week of feeling mostly normal; my parents arrived into town to go to the hospital with me and Jason on Tuesday; and I had found myself completely focused on the love, compassion, kindness, and other positive energy that everyone had been showing me. This allowed me to be excited for going in for what could potentially be the halfway mark of infusions in my treatment cycle. We woke up on Tuesday morning to about half an inch of snow, which excited me and felt like a good omen (although I knew that was going to make the 50 minute drive messy with the idiot southern drivers). After the anticipated longer than normal drive that included numerous cars that had crashed into the median, we made it to the hospital by about 8:40. As I sat waiting to be taken back for my blood work, I realized that the snow had been enough of a distraction to cause me to forget to put my lidocaine cream on my chest to numb the area around my port. I worried that the accessing process would be terribly painful, but my lab nurse Elaine used a numbing spray, which dulled my senses enough that I only felt the pressure of her putting the power needle into my port. I did notice a bit more of a stinging sensation afterward and could feel the movement of the line a bit more than I did during my first infusion.
After labs, we met with Elizabeth (clinical trial nurse), Megan (physician’s assistant), and Dr. Park. Elizabeth had her usual cheery demeanor as we discussed the side effects I had experienced through the first round, and she was very pleased with how I had responded and handled the effects I felt. Megan came in next, and asked me about my experience through the first round. We discussed additional options to treat nausea and mouth sores, and warned that it was likely that any side effects I felt during the first round would probably happen in subsequent rounds and worsen in subsequent rounds. Finally, we met with Dr. Park and quickly and again discussed my experience during round one. He was also pleased and impressed with my reports of my effects and management. He reviewed the results of my blood work and reported that all of my levels, specifically my red and white blood cell counts and differentials, platelet counts, protein and vitamin D levels, and other results all were in normal ranges, even for healthy people, which he said was very good and better than expected. He conducted a physical exam, and noted that the size of affected nodes had shrunk to about a centimeter or so each (from about 2.5-3 centimeters when discovered/at the start of treatment) and were more mobile and squishy, which he said is a good sign. After concluding our meeting with Dr. Park, I headed up to the infusion area feeling very confident and optimistic.
After only a couple of minutes of waiting, around 10:30am, Mom, Dad, Jason, and I were taken back to my chair for the day, which had a window view to the atrium with snow still falling and was only partnered with one other infusion station (instead of being in a pod of four like from my first round). We met Claire who was going to be my infusion nurse for the day. She got me started on the sodium chloride flush and drip while she ordered my chemotherapy drugs from the pharmacy. She started my Rituxan drip around 11:10am on the rapid schedule, which meant I would complete it within two hours (as compared to four hours from my first infusion) since I had responded well the first time. I made it through the Rituxan without any reaction again, and was able to start the Vincristine drip by about 1:15pm. I made it through the Vincristine, Doxorubicin, and Cyclophosphamide without any reactions, and was able to finish the entire infusion by 3:30pm. The time seemed to pass very quickly between having conversations with Mom, Dad, and Jason, doing some work, and reading. Although the day had taken significantly less time than my first infusion, I felt exhausted by the time we made it to the car and started our drive back to Greensboro. After resting for a bit, I rallied and made it out to get pizza for dinner.
Shortly after making it back home, Mom and I snuggled up in bed to catch up on The Bachelor while Dad and Jason played video games. Just as we were starting to completely rot our brains, I developed severe nausea that came with heavy breathing and a headache. After taking an Ativan and Compazine, I was able to make it through the rest of The Bachelor albeit uncomfortable and afraid of being sick at any point before falling asleep. Last Wednesday, I woke up with nausea that continued throughout the day in varying severity and then showered to see my hair stubble continuing to fall out creating more significant bald spots, but pushed through and went to work then to the gym despite some mild fatigue. We fortunately ended up with about 4-5 inches of snow Wednesday night, so I had a snow day Thursday, which was great timing with my blood counts continuing to drop after my infusion on Tuesday and with the continuing nausea and fatigue. Last Friday morning I took my temperature as I do every morning and night, and had a slight fever (99.4F) for the first time since starting treatment. This made me nervous, because if my temperature gets up to 100.5, I have to go to the hospital. I also worried that it was an indication along with the addition of the nausea this round that I would continue to experience worsening side effects and symptoms. I decided to work from home last Friday as a precaution in case my temperature continued to increase and to help stay away from as many people and germs as possible. Fortunately, as Mom and I sat beside each other on the couch working from home, my temperature dropped back down to my normal 97-degree range. (*For anyone needing to monitor temperatures regularly, I have been using the Kinsa smart thermometer and iPhone app since January, and love it. It is a thermometer that plugs into your phone and records your temperature automatically and allows you to add symptoms, notes, pictures, and medications taken. This is not a sponsored opinion; just something I’ve found to be extremely helpful and make things easier.)
Jason and I enjoyed our last bit of time visiting with Mom and Dad Friday night and Saturday, and even got out of the house a bit for burgers for brunch Saturday. From last Saturday through Tuesday morning, I battled nausea, fatigue and a headache. Although I was able to manage the nausea with Ativan and Compazine, it was a very unpleasant side effect, but it subsided on Tuesday, and I haven’t had nausea since, but have still continued to battle fatigue. Throughout this round, I also have had a bit of a decreased appetite, because my taste buds seem to be dulled. Instead of being excited for every single meal and snack like I normally am, I have been eating at my normal designated meal and snack times and tracking my food to ensure I’m maintaining a healthy diet. I fortunately have not had to make all that many changes to my diet since starting chemotherapy, because Dr. Park advocates for a high protein, nutrient-rich diet with many fruits and veggies, and minimal processed, fried, simple-carbohydrates, and other unhealthy foods, which was the diet I maintained already. There have been several things that have changed my diet that are mostly based on the increased risk of bacteria associated with them and unfortunately correspond to many of my favorite foods. I have to have all meats cooked to medium or better and all fish cooked well, which is especially frustrating, because I love and think steaks should only be prepared rare or medium-rare at most, burgers medium-rare, and seared tuna rare. I have found myself not eating as much red meat as normal, because it feels like a travesty to overcook such meat. I also cannot have runny eggs, which are my favorite and cuts out all Benedict options for brunch. I also cannot have sushi and am avoiding most deli meats unless I know they have been properly stored and freshly cut. There are some warnings against blue cheeses and other stinky and some soft cheeses, but I haven’t completely avoided those and have still had them on days when I’m feeling mostly normal. All fruits and vegetables have to be thoroughly washed with soap prior to eating, even things like the outside of bananas and citrus fruits that have their natural packaging. I have mostly avoided alcohol with the exception of a couple of drinks at dinner the Saturday night before I started my second round. Dr. Park told me to avoid alcohol as much as possible because it depletes my already weakened system and can increase the occurrence of mouth sores, but doesn’t require complete avoidance. My approach with diet and exercise and work are still to be reasonable and listen to my body. I’ve been able to go into work normally for the most part outside of infusion days, and keep up going to the gym on average 5 days per week (although my intensity on some sessions has been less).
Jason and I are still endeavoring to maintain as much normalcy as possible without compromising my health and prognosis, and I think for the most part it’s been relatively easy to do so and has helped me stay stronger physically, mentally, and emotionally. We have made other changes around the house like installing an automatic hand-sanitizer dispenser in the downstairs guest bathroom, so everyone can sanitize or wash their hands immediately upon entering the house. We also keep a bottle of hand sanitzer in each of our cars, and I keep one in my purse and on my desk. I use Clorox wipes to clean my desk and other things I touch in my office daily. I sanitize all gym equipment before using it. We are even more meticulous about keeping all counters, light switches, door handles, etc., cleaned with Clorox spray multiple times per week, and fully clean the floors 2-3 times per week. I also am taking the effort to wash all packages before putting items into the cabinets and refrigerator as an extra precaution to prevent the addition of germs to my environment and system. We have also avoided going out in public quite as much, and Jason has taken over more of the errand running than usual. We are selective about going to restaurants that we know are extra clean and less-kid friendly. I already don’t eat fast-food, because I don’t think the food provides nutritional value and isn’t worth empty calories, so that didn’t require any change but those types of restaurants and buffets present a very high risk of infection and were on the explicit no-list. Another major change that I can note to lifestyle is avoiding interactions and contact with children and child-friendly environments. Most of my charity work revolves around children and child-focused organizations, so I have had to step back from all hands-on activities where I would be in direct contact with children or in their environments. Dr. Park explicitly told me to avoid contact with children because they tend to carry more germs and because some vaccines children are given are live vaccines, which would easily cause me to become ill. For the most part, avoiding contact with children wouldn’t be hard for me, but with my work with as a guardian ad litem, I had to withdraw from my case, because the child I represent lives in a group home, and I cannot be around her or the other children in her home or school. I am maintaining contact via phone and email, but it has been particularly heart-wrenching to not see a child who I’ve worked with for two years and is so vulnerable and craves love and continued connection that she has otherwise not gotten from family members that abandoned her. Another change I’ve had to make comes in the same spirit of craving attention and love: I’ve had to be careful to not let Annabelle and Layla give me puppy kisses, and they have been getting extra baths each week. They do not play well with other dogs, so we don’t go to the dog park anyway, but I would avoid it if they did. We have also cut back almost entirely on our travel, which feels a bit suffocating considering we average probably 1-3 weekends a month away, but it’s not worth the exposure of being contained with people in planes or trains or exposure to foreign foods or environments for the several months while going through this. While some of these things are extra steps of precaution than I’d normally take and can be time consuming, they’ve kept me from getting sick thus far, so I consider them well worth it.
It has been interesting to compare the side effects each day from the same day in the first round. The effects have overall been more pronounced this round as predicted, but still manageable. I’ve been frustrated not knowing what effect to expect at any point of the day. Like yesterday, I was only dealing with mild fatigue, but today I’m feeling very fatigued, but considering I am still able to come into work and will go to the gym after work, I think I’m faring much better than I could be. I’ve also found it interesting to see and understand my reactions to different experiences, especially those that engage emotion more, as I go through treatment and all of the changes that come with it. Over the course of the past week and a half with my stubble falling out and creating bald spots then finally a cancer-patient looking scalp with have these tiny, fine blonde (almost transparent) hairs scattered with darker ones, I became less frightened of and focused on that change and have accepted my new look and have found myself feeling comfortable in my own skin (haha, yep there’s a pun there). I didn’t cry again after leaving Jay’s salon the night I shaved it and found I dealt with it without as many feelings of loss, sadness, and embarrassment. I’ve had four instances at the gym this week where four different men that often take some of the same classes with me have mentioned something about my newly-donned workout beanies that they’ve deemed “skull cap”. They all said something without any ill intention and some statements that I found quite comical, such as the middle age man who was choosing his weights for class as I was choosing mine on Monday, and he watched me choose mine, and said, “Damn. You’re making it hard for me to keep up with you going for a heavier weight today. I guess I should know you’re hard core working out in your skull cap.” I had no idea how to respond or feel so I chuckled, grabbed my bar and walked over to my spot determined to let it be a point where I prevailed over cancer and its side effects and proceeded through my class. I left afterwards still not able to pinpoint how exactly that made me feel. It seemed like a more classically appropriate emotional response to feel something negative, but I mostly felt apathy. The three other instances of men saying things in similar intent, and likely unaware as to my reason for wearing my skull caps, struck me less with each subsequent occurrence and made me laugh, thinking “huh, I must look more bad-ass than cancer-patient like”. I also haven’t had the feelings of frustration and thoughts of unfairness that I have cancer like I did when I was first diagnosed, and am overall feeling confident and optimistic that my treatment will work, and that I will soon move past this phase and onto my next challenge. All of this seems like a great test of self where I am getting to discover things about myself that I didn’t previously know. This has been helped by the encouragement and kindness and advice of some of my friends and family who are helping to keep me grounded and focused on the most important things. I am anxiously anticipating the PET Scan on April 2, which will determine the duration of my treatment, but more than that I find myself excitedly anticipating the end and getting to start traveling and visiting friends and family again and physically participating in celebrations of weddings, births, birthdays, anniversaries and all of the many other joyous occurrences in life. For now, I anxiously await the end of work in a few hours and then the arrival of Amit and Alecia who get into town tonight to spend the weekend with us, and Abbey who gets in Sunday morning to spend a few days visiting!
One final note, my friends Caroline and Sabrina and other teammates from Team Elevate are riding in the Cycle For Survival events this weekend in New York! Please support and share the event on social media to raise awareness. One of the featured areas of research benefited by Cycle for Survival is my type of cancer: Diffuse Large B Cell Lymphoma, and Dr. Moskowitz is leading research on treatment that is very similar theory to my clinical trial focusing on reducing the exposure toxicity of chemotherapy to DLBCL patients while providing effective treatment. I am so proud of Team Elevate for their fundraising efforts: they have raised over $40,000 that will help research treatment and cures for rare cancers like mine! You can still donate using the Team Elevate link above. They have also dedicated their rides to me this weekend, so I will be cheering for all of them from afar as they participate in this exciting event, and counting down the days until I can be there for next year’s events!