Chapter 29: The few remaining Gamma

 Chapter 29: The few remaining Gamma

I wait for a little while. The nurse comes by first. It’s the same nurse I had during the last session. She is kind and asks me how I’m doing and inquires if I need anything. I tell her that I’m doing physically well, and that I don’t need anything else; however, I’ve developed a superficial burning sharp pain at the site of my brain surgery (craniotomy) that is difficult to rest on, and which often wakes me in the early morning. He suggests a hydrocortisone cream and occasional ibuprofen and Tylenol; which, with my ice and heat packs, is helpful. Additionally, the fatigue is greatly increased compared to my first radiation experience. And then I thank her. At that time I’m already receiving fluoxetine (Prozac is the brand name) for depression and anxiety, and I tell her that I think it is helpful, and that I’m looking forward to seeing if it starts to work more effectively. I’m also receiving Ritalin for cancer fatigue, as well as Ativan for nighttime anxiety and sleep. I’m incredibly grateful for these medications. They make me feel as though I can interact normally with the world, even if my fatigue or emotional status attempts to intervene.  

don’t see it as a crutch. I see it as a gateway to normality. Afterwards the resident doctor comes in. He asks me similar questions. I answer them honestly. I try to tell him some extra information about lack of side effects and how my left-sided blindness is doing so that he has more to report to his attending doctor. I’m always rooting for the residents. I tell him that I would like some clarification on the radiation plan. That I want to make sure that the tumor in my right frontal lobe (which threatens to affect my personality or sense of self) is being attacked. He tells me that he will make sure it’s being targeted. Then he leaves the room. I wait a while, supposedly the attending doctor will come soon. After a while the resident comes back and tells me he confirmed the plan, and that the right frontal area is certainly being targeted. I thank him. Then he leaves. I’m sure that he has a tremendous amount of work to complete. Then the attending Doctor, Doctor C comes in. He is the same doctor from last time I did radiation therapy. We talk about how I’m doing. He’s pleased that I haven’t had any side effects, and is somewhat surprised. I ask him again why we don’t do extra therapies. He talks to me again about maximum radiation doses and benefit versus risk. He’s worried that extra radiation may cause a significant amount of brain necrosis (death of healthy brain tissue) that would cause significant neurologic side-effects without making a meaningful difference to the cancer progression. I tell him this seems reasonable, especially given my goal of remaining functional and myself as long as possible. Then he tells me that we’re almost done with radiation sessions. Next week would be the last few. I feel devastated. I ask him if we can extend with some low dose sessions, just for a little bit. He tells me that it probably wouldn’t be possible. All of a sudden I feel as though my safety net is disappearing. Radiation was killing the cancer and keeping it at bay. What would happen when it was over? Would the cancer suddenly return when therapy ended and threaten my well-being like it had before? Shortly after my final radiation session and meeting with Dr. C, I would see my neurooncologist, at which time we attempted to decrease the steroids (for swelling) and he wanted to start me on salt tabs for persistently mildly low sodium.  I did both. The salt tabs were quite possibly the most disgusting thing I ever placed in my mouth. Immediately after, I developed a strong sensation to vomit, and eventually did, which upset me because how was I supposed to get the salt this way? Eventually I order some coated tablets just as large from Amazon, which were much more palatable.

              Following that news, I was filled with anxiety. I sent messages to my neuro-oncologist about potential trials and treatments for afterwards. I desperately wanted a plan that would make me feel safe or stable for the coming months. I was terrified. It felt like a chapter was ending, and that when it ended maybe my story would end shortly after. The depression and anxiety acutely worsened. It became incredibly difficult to get enjoyment out of even the most simple activities. I was constantly worried about what would happen next. Would I be safe? Could I continue like I was currently? Could I continue to see my friends and build our relationships in meaningful ways? Was I on a timer? What was my expiration date? It was a question that I both wanted to know the answer to, and did not.

              Eventually I had a clinic visit with my neuro-oncologist. We didn’t have a complete answer yet for next step; although we could start the Optune device, which is a helmet you wear most of the day that uses oscilating electrical fields in attempt to prevent tumor growth. He was doubtful about any clinic trials, because some of the therapies—pembrolizumab and avastin—would exempt me. It was basically the same issue as before. Meanwhile I reached back out to the institutions that I had been in contact with to see if they had any maintenance trials. They did not. I looked around for others. I found nothing promising. All I wanted was a med or a therapy that would stop growth. It didn’t need to kill the cancer. I just wanted to stay stable. I wanted to live through the next ski season and be able to ski with my friends again. I wanted to celebrate Christmas with my family and friends again. I just needed some sort of medical safety net, but it was not yet available. And so after that visit the depression and anxiety intensified—unsurprisingly. I increased my dose of fluoxetine, hoping it might mitigate the imminent terribleness. One day later I started the higher dose. One week later I feel like maybe it is helping.

              I must share, as I did a bit before, that the most difficult piece of this is knowing what to do with each day. I don’t wake up with a strong desire or want with what to do each day, which makes it difficult to decide on an activity. And of course, by the end of the day or beginning of the next day, I’m faced with this crippling anxiety that maybe I did not spend the previous day in a meaningful way. It’s a terrible feeling, thinking you’ve wasted one of your few remaining days. I will say that this usually does not happen if I spend time with other people, or I’ve done some writing, although that doesn’t really offer any escape. At one point Ariana calls me and tells me she talked to Elizabeth. Two of my best friends from medical school. They tell me that they think I just need someone to make decisions for me. I completely agree, they’ve always known me well. I’m thankful that they have thought about my situation, and seem to understand what I truly need. Afterwards I have some conversations with nearby friends and explain this new realization to them. They agree to help, and I’m grateful for that. The next few days activities are planned for me and I finally start to feel relaxed. Thank you, friends, for taking care of me in the way that you have. 

    It's another day of radiation. They ask me about music. I tell them the same as usual, but for next session I’ll have an actual playlist prepared. Then they tell me that they loved the kombucha, and that they should be done and be able to return the bottle my next session. I make a mental note to bring a new bottle for the next session. They told me that the last flavor I brought was lemon-ginger. I decide I’ll bring a blueberry-ginger for next time. Then I’m led to the room. They give me two blankets without asking, and I finish my radiation session. Afterwards, there’s a sign on the desk that says “doctor.” One of the techs leads me to a patient waiting room. A nurse comes by and takes my vitals. They tell me I need labs. After the vitals, a phlebotomist comes by to draw my blood. I offer my left arm, which has been poked less overall. They try the AC of my left arm, it’s painful and I’m worried they hit tendon. They’re unable to draw blood. A different phlebotomist comes over and they try my right AC. Another failure. My AC regions on both arms are covered in little caruncles. Scar tissue that resembles small mosquito bites from multiple phlebotomy sticks. It’s incredibly painful if they try to go through these scars, so I usually ask them to avoid them. The two phlebotomists say that they’re surprised because I look like an easy stick, but tell me they’re going to get their colleague who they explain is an expert. I thank them. The last phlebotomist comes in. She goes for my left thumb and is able to draw blood. The hand is also a painful place to have blood drawn from, but I’m glad that they’re finished. After applying bandages, the nurse who took my vitals leads me to a room where the doctor will see me. I sit down and try to get comfortable. The resident enters first. He asks me a few simple questions about how treatment is going. I answer them honestly and tell him that I do not believe I’m having any side-effects. No new neurological symptoms, no headaches, maybe a tiny bit of scalp irritation, but my hair has started falling out yet. Then I ask him if we can confirm that the radiation therapy is targeting the non-surgical cancer legion in my right frontal lobe, because I am very worried about that particular lesion. He tells me that he is fairly certain that it is, but he will confer with the attending and make sure. The resident does a quick physical exam. His exam skills seem good to me. Then he leaves the room and tells me the attending will be in soon. A few minutes later the resident comes back in with the attending. The attending doctor greets me, and summarizes quickly what the resident told him from our conversation. I quickly confirm. Then he tells me that the right frontal lesion is being targeted, and he brings up the therapy map on the computer to show me. I’m glad to see this. I ask him if there is any reason we can’t do a larger total dose of radiation than we’re doing. I figure that the harm from inadequate treatment is much worse from extra radiation damage. He tells me in short, no.

                           He tells me that the risk of radiation necrosis (where healthy parts of the brain die) is increased significantly, but the additional treatment benefit is quite minimal.  I know that we have been over this before. But it makes me feel like I am advocating for myself to ask again. As such, the potential for harm far exceeds any potential benefit. He then reassures me by telling me that I am already receiving the maximum dose for repeat treatment. I thank him and tell him I understand. He then informs me that I’m already halfway through my final treatment week. This terrifies me, since the act of getting treatments gives me such a sense of comfort. I tell him as such. He understands, and tries to reassure me by telling me I’ll still be getting the immunotherapy afterwards. It is a small comfort. I thank him for his time and our visit is over, then I leave for home.