Today is Saturday, and it has been such a wild week. This is my last week of rest, and I will return to work on Tuesday. I’ve been notified that I am to work providing supplemental supervision until the oncologist’s office sends in the accommodation forms. This is a whole whirlwind with work, and I genuinely hope I am not asking for too much in asking for a 4.5-day week and to remain remote for the duration of my treatment. My work requires travel, and I am unable to take that action. Lifting things more than 5 pounds is painful, and not to mention, this morning, I moved my left arm across my midline and over to the right, and immense pain started searing over the bottom left of the stitched area. I am nowhere ready for movement and genuinely thought I was prepared to move more. It’s disorienting to have the mobility of my hands and arms but unable to complete actions such as lifting or carrying. I pushed myself too fast, and even now, a couple of hours after, even with pain medication, that area feels like it’s burning.
Today, I am staying home and rotting on the couch, trying to catch up and process everything that has happened this week. It was so busy and exhausting. Part of me is upset because what I did should not have taken such a toll. Again, this is part of that lesson to give myself grace. I can no longer compare myself to a baseline pre-surgery, at least for now. What I am currently experiencing is a baseline for the upcoming treatment I will be undergoing.
As it stands now, chemo was meant to start on Monday, but yesterday, I received word that it would be postponed until the insurance company approves the plan. I am disappointed and frustrated since it does feel like a rush against time to treat this cancer and ensure all the cells have been eradicated. It’s so wild to me that a single cell going berzerk has brought on such a change in my life and my body.
Here is a breakdown of the week, which will help me process and review all the details.
On Monday, I went to a post-op appointment to review the healing of my wounds. The nurse was happy with the results and noted two areas of concern to watch. She gave great advice and announced to stop taking bird baths and go ahead with regular showers. I was so happy to hear that. I also learned that the pain will continue until 6 months from now as the area is still healing and the nerves are attempting to heal, and to expect the stabbing pain to persist. I did get a refill of medication, and I am so thankful. I still need to sleep upright and can’t turn in my sleep. That saddens me as I love to sleep on my side and have honestly had such terrible sleep since the surgery. The post-op nurses will continue to check in on me every two weeks until the 3-month mark, and I will continue to send updates until the 6-month mark. I hope all goes well with healing, especially in the two areas of concern. The area is still unsightly to me, and that body dysmorphia has come into full force already.
After this appointment, we went home and rested for a bit. Then, it was time for a CT scan at another location. The wait was brief, but I saw an incredible sight. A group of 10 family and friends walked in, all wearing white shirts with pink ribbons with the phrase “Support Squad” on them, and the lady of the hour, with her head shaven and dressed comfortably, was elated and exuding happiness all around. I can only assume she was either receiving her last treatment or that she had finally finished with everything, and her test results indicated she was free of cancer. I hope she got to ring the bell and enjoy the rest of her day. Seeing her and her support system show up for her was so beautiful. The nurse called me, and I entered the room, another futuristic-looking space, and was injected with another substance and was moved into the scanner. The liquid felt warm in my body, gave me a metallic taste in my mouth, and made me feel like I was urinating myself. It was incredibly uncomfortable, but the nurses reassured me that this was expected and that I was doing well. The CT scan was over in minutes, and I was given the clear to go home. I was fatigued by the end and spent the evening resting and spending time with loved ones.
I went to get bloodwork and an ultrasound at the fertility clinic on Tuesday. The plan was to ensure that I was ready to begin the process of fertility preservation. Everything looked healthy to the doctor, except one fibroid, but overall, it was good to start—more poking to take blood to analyze. My left arm has been poked many times this week. Then, I had a therapy session to process everything that had been going on. My therapist has praised me for my coping skills and for maintaining a social life with various activities like journaling, word searches, and reading. She stated that the most significant concerns are isolation and lack of activity and that I should continue to focus on leaning into my social circle. I feel lucky that my therapeutic relationship with her began in 2021, and I feel very comfortable with her guidance. We also discussed how this month has been the time I have TRULY rested. Even on my vacations and trips, there’s so much stress and weight on our activities and worrying about everyone’s enjoyment of the journey, especially with my family. Having this month off has been pleasant, and it’s wild to think I have not adequately rested in years. She also noted that I should let my feelings flow and not hide them. However, I retorted I wasn’t hiding them – it just felt like I wanted to focus on the good things in my life. I am still sad, but those feelings will come and go, and most importantly, I don’t resist their visits. I welcome them and will cry freely. I will see her in two more weeks, and I am happy that my skills and strategies have improved tremendously and helped me navigate this ordeal. In 2021, I started therapy, and that same year, I began transcendental meditation. I don’t know how even more deteriorated my mental health would be without these two strategies. This is not to say I am not sad or impacted by this diagnosis – it simply just means that my sadness comes in waves, and the most random things trigger it and that I am able to greet these feelings in a way that still keeps myself grounded as much as possible. Driving down the road and catching a glimpse of the sun at just the right angle will make me cry at the beauty and sadness that this will all end soon. Or maybe it won’t? It’s the anguish that seeps in at 3 am when I can’t sleep because of the stabbing pain. But it will all be okay, this will all pass soon enough. Just have to take it one day at a time. This is part of the process.
Wednesday, I spent two and a half hours waiting to get my blood drawn, but the time was spent working on my word searches, so I wasn’t too anxious about that process though I was frustrated with the wait. I learned my lesson and will now go to a different clinic. Then, I went to the eye doctor to use my benefits to get an update on my prescription and frames. Afterward, I went to get food and ingredients for a pepper steak. Needless to say, I burned it, but it was well-cooked. I had dear friends over, and we enjoyed spending time together. This was a very tiresome day and noted being up and about to get groceries was intense and really took a lot out of me.
On Thursday, I went to the hospital nuclear med to get my bone scan. The process involved me showing up and getting injected with liquid found in a vile securely housed in a thick blue cylinder retrieved from a room with a nuclear warning sign. The process was easy only because the nurse communicated with me and reassured me that this process was safe. I then was instructed to go home, eat as usual, and return in 3 hours. I did all that, and coming back, I had to wait some more because they had an emergency scan that pushed my appointment back. No worries, I had my word search. Once I was called in, it was, at most, 40 minutes to complete the scans in which I laid still while the machine whirred into action. I asked the nurse if I could take a picture of my skeleton, but I could not. It is so wild to see my body in this way, and she assured me that there was nothing that looked suspicious or that she needed to take extra images of meaning – preliminarily speaking, that my bones were good and that no cancer cells had permeated this system. I breathed a sigh of relief when I went home, ate a salad, and attended the next fertility appointment scheduled for the day.
During this appointment, the nurse explained the process of retrieving the eggs and the steps I needed to take. Should the process start, this would be routine labwork, self-injections in the AM and PM of the medication, and ultrasounds every other day to assess the eggs and the follicles. Then, once it was determined that the eggs were ready, the retrieval process would be scheduled. I’d be placed under anesthesia, and the eggs removed and stored. I would also need an advanced directive for my eggs should anything happen to me – they want me to state what I would like done with my eggs. This was so overwhelming to me, not to mention the process costs around 15k to complete, even with the help of insurance and grants. It seems that fertility preservation is not meant to be for me, and I am still wrestling with what that means for me. Still, I also recognize that I would mentally not be able to maintain this rigid schedule of injections, frequent office visits, frequent poking to get blood, and frequent internal ultrasounds. I do feel backed into a corner with this situation, but I have to remind myself chemo will not make me infertile. It will simply make it a bit harder. It’s also brought up heavy feelings about motherhood and if it’s meant to be for me. Regardless, I will proceed with canceling the process and just making sure that I get the chemo treatment started. This was really overwhelming.
To finish the day, I met with the boudoir photographer who took my photos literally 5 days before my surgery. I highly recommend her, and it’s just the act of having pictures of your body before surgery that is so important. I felt like I had fallen into a trap yet again with my psyche and my perception of my body. When photos are taken of me, I hate how I look in them. Years will pass, and I will look back on them and fall in love with myself and how I looked, and then I get bummed out and upset at myself. This vicious cycle persists and is now even moreso with comparing my body pre and post-surgery. I could not decide on photos – it took us nearly 56 minutes to choose 20 images. I loved how I looked and just how pretty I was. I know I shouldn’t compare, especially in my state – but damn, do I feel like Frankenstein’s monster. It’s all aesthetics, too; my therapist wanted to make sure I wasn’t feeling resentful toward my body. I don’t. I recognize the power of 1 cell and that this happened TO my body, and through no fault of it – I do not resent my body at all. I love my body, but I struggle with aesthetics, especially given that the area affected was truly a cherished part that I wish had received more love, care, and caresses. That aspect of it has led me to cry quite often. That session made me tearful and just grieving what my body looked like. I know this will take time to resolve, but as I type this, I am tearing up and saddened by what has happened to me. And yet I persist.
Goodness, what a WEEK, and it’s not even Friday yet.
On Friday, I went to a derm appointment to review the progression of some perioral dermatitis – we gucci, it’s all cleared up now. I got advice on what creams and ingredients to put on my skin, given that chemo can result in rashes and irritated skin. I overheard the whispers, “This patient was recently diagnosed,” it felt like a forbidden secret. I was shocked by how such a simple line made me feel like an outsider. The interactions were okay – and then I went to an information session to review how to navigate the effects of chemotherapy. Wow, it was a lot, and I sweated throughout. It is a random case of symptoms and a random selection of how it could affect me. I am nervous. I reviewed the hair retention – cold capping – and was told because of the process, the hair is going to fall out anyway and to save my money. I got a prescription to get a wig.
They said that depending on how I respond in the first three sessions, it will likely tell them what to expect from my treatment an what precautions to take. I have not yet had my port installed, and they noted the first session would then be intravenous. I toured the space and saw an entire room with over 40 people in chairs hooked up to their IVs receiving chemo. Plenty of snacks were available, and people were engaged in various activities—some with guests and others taking naps. I reviewed the food aspect and expect food to taste different and to be mindful of how much I eat. They want to ensure I maintain the same weight and eat to ensure my blood count is good and healthy to navigate the intense process. Should I stop eating or lose weight? I have to try meal replacement products. They recommended the Mediterranean diet and stated that there are no restrictions on foods. I asked for a referral to work with a nutritionist who works with chemo patients to assist in navigating this new stage and to help with family expectations and for their wanting to restrict my diet. I’ll have bloodwork weekly, and I have to call the office if my daily temperature check is above 100.1 to determine the next steps and how to address it. I was told to refrain from manicures and pedicures at salons to minimize the risk of infection and to be mindful of germs during this time.
Fatigue is a given, and it’s a cumulative component. She said the best way to ensure that I fight against fatigue is walking and remaining active. She said the chemo can affect my nails by making them brittle and changing color; other chemo drugs will affect my kidneys, so I must stay on top of hydration. Additionally, there could also be bone pain associated with the chemo treatment – and to handle this, they recommended Claritin. I was shocked, but somehow, that works against the bone pain. She then reviewed the CT scan results from Monday and reported positive news: no cancer was detected in the upper abdominal area or chest. Overall, this appointment was a gut punch because I was not expecting how random and contradictory these symptoms would be. I could get diarrhea, constipation, or both. I left that meeting tired and agitated.
I then went to get my taxes done, but that process was not done since I was waiting on two documents. The session was fine, and there were no issues. I am thankful it was an easy process compared to other years. That evening, I saw a dear friend with her baby. I am grateful to see her and her baby and spend time together.
This week has been so busy, and I am happy it’s over.
On Tuesday, I return to work, and on Monday, I hope to find out when my chemo treatment will start. I am anxious but also ready to get this over with. What’s been most frustrating has been the limited mobility and the knowledge that it will take me 6 months to get back to my typical function. Not to mention, the upcoming surgery for the port installation will also limit my mobility yet again, with the inability to lift or carry more than 5 pounds and limited range yet again.
Today, I’ve just been occupying the couch watching nature documentaries and trying to enjoy my time with my mom. I am wearing a cozy robe a dear friend gifted me and comfy clothes. So much is up in the air, but today, I am choosing to regurgitate all that happened this weekend in an effort to leave it behind, along with a gnarly jaw tension headache, and of course to update those who are curious. Today I also spent time pruning and throwing away the flowers I received. They are dry, and their time is up. These flower bouquets have really brightened my days. This entry took a long time to write, but it’s done.
Liminal Leisure 
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