This post is not edited because I do not want to sprinkle over the emotions I had at the time of writing this a few days ago. Sorry for any grammar/spelling errors, but that’s life. 😉
I’m sick of being sick. I’m sick of laying on the couch. I’m sick of having to cancel plans I made months, weeks, or days in advance from grabbing a cup of coffee to going on spring break vacation. I’m sick of feeling good for a day or two, thinking I’m on the mend, only to realize I was being tricked. I’m sick of my doctors and I knowing what my symptoms are, but not knowing why. I’m sick of not knowing when I’ll feel better for a sustained amount of time.
It has been a hard month. Probably one of the most difficult months I have had. I’ve felt comparable to when I had radiation treatments or right after surgery. But at least those times I knew the cause, and I knew it would improve. What has made this past month hard is that I get hit from side to side with unexpected illnesses and no one knows why. Reactions from treatments? Not sure. Coincidences? Maybe.
I returned to Oakland on February 27th after visiting my partner in Washington D.C. and surprising my Mom in Boston for her birthday. The day after I returned, I had my immunotherapy infusion. It was also the first day I was going to combine my current treatment with the targeted therapy I had tried a few months prior.
My infusions always make me tired. The doctors say the drug itself shouldn’t cause fatigue, but regardless of what they say, I always feel fatigued for a day or two post-treatment. The targeted therapy I started is known to cause fatigue when starting treatments, so I knew I would get tired from that.
As expected, (…by me at least), I was knocked off my feet for a couple of days. I’ve learned with fatigue that if you fight it, it will only push back harder. Instead, I lean into it and let the fogginess take its course. The fog cleared away after a couple days, and I felt good for one day. The next morning, I woke up with what felt like strep throat. Since I had recently undergone my treatments, it was important to make sure I did not have strep. I went to urgent care and fortunately my test was negative. Their diagnosis: “unknown respiratory virus.”
I thought I would get better quickly, but over the following week I felt worse. Congested, achy, fatigued…all I felt capable of doing was laying on the couch. The first couple days of forced relaxation and movies were nice, but I soon went stir-crazy.
I finally felt better and was able to get back to school and even sailing as my congestion cleared. But it was only a little over half a week until I woke up in the middle of the night with a fever. I had to go into urgent care because we needed to make sure I did not have the flu since I was supposed to receive my next infusion in two days. The rapid flu test came back negative, but the doctor emphasized the test’s low sensitivity (60%), which means it is susceptible to showing a false negative (a negative result even if it is positive). Her diagnosis: “perhaps the flu, but some virus.”
I thought it could have been my previous respiratory infection lingering around, but I had no congestion, so this was attributed to a completely different virus.
You may be thinking my treatment made me more susceptible to getting sick. That thought crossed my mind too, but all my lab tests were normal and showed my immune system was functioning well.
I spent the next two days on the couch with on and off fevers, achiness, headaches, and fatigue. The decision to move forward with the infusion was going to be made at the last minute.
On the day of my infusion, my friend Ali drove me to UCSF since I was unable to drive myself. I was still feeling sick, but fortunately no fever. Still, I wore a mask mostly for the protection of everyone around me in case I was contagious. When I was escorted in, I did not have my usual San Francisco view and was instead put into a closed off “droplet-protection” (i.e. don’t come in without a mask) room. (…I at least had a bed).
The nurse took my vitals and since my temperature was normal, my doctor gave the approval to move forward with the infusion. To my surprise, I started to feel better over the course of the afternoon and my fatigue wasn’t bad either. My temperature stayed low and I started to feel ecstatic because in just a few days my partner, two friends, and I were going to stay up in Tahoe for the first weekend of spring break to ski! Also, in less than a week I was off to Baja to swim with whale sharks, snorkel with sea lions, kayak around a UNESCO World Heritage chain of islands, and watch the Gray Whale migration. My trip to Baja was going to be the perfect way to step away from all my treatments and recent periods of sickness.
In the middle of the night before we were going to head up to the mountains, I woke up with a splitting headache and dizziness when standing. I thought I was going to pass out if I didn’t lay back down. I went back to sleep and didn’t think much of it perhaps because it was 4:00AM or I wanted to pretend everything was fine. It wasn’t
I woke up a few hours later with the same feeling, but fortunately not as extreme. It was yet again time to go to urgent care. This time, rather than waiting, I was brought straight into the back. I felt a lot better once I was there, but still had lingering dizziness and headaches. I thought I may have been dehydrated, but my blood pressure was fine. I was given IV fluids just in case.
I texted my skiing group to let them know I was in urgent care, but still kept open the possibility of leaving for the mountains in a few hours. That door closed once the lab results revealed my sodium levels dropped significantly. I was hyponatremic.
The reason this is important, and not good, is sodium is one of the primary molecules in your body that determines the flow of fluids not just on a macro level, but on the cellular levels for normal organ function. Fortunately, while my levels were low, they were not emergent enough to necessitate hospitalization. The primary concern was to make sure they didn’t continue to drop.
My neuro-oncologist was informed. She discontinued my targeted therapy, prescribed Gatorade, salty fluids, and no Tahoe. Whether or not I could go to Baja would have to be a game-time decision.
I felt horrible being the reason my group couldn’t go to Tahoe. My partner and housemates kept me company watching movies and T.V. while I felt crummy and laid on the couch. There were moments I started to feel better and hopeful, but it was met with yet another decline. When I woke up Sunday morning feeling dizzy and nauseous, I took another trip to urgent care with my partner. Before I even had a chance to sit in the waiting room chair after checking-in electronically, the nurse who had been caring for me over the past several visits saw me and brought me back without any hesitation. Oddly, my sodium was higher than before, but still below normal. I grew frustrated since I continued to feel bad and none of my doctors knew what was causing my low sodium levels.
The next day (…one day before I was supposed to depart for Baja), I woke up feeling the best I had felt so far. I was able to drive myself to get my blood tests, and I even went to get a new haircut in case I could make it to the Baja beaches. Again, I was hopeful, but that hope disappeared as I started feeling dizzy again. Sure enough, my sodium levels had dropped to where it was before.
I canceled my departure flight for the next day but held onto my hotel reservation and return flight with impractical wishful thinking that I could feel better and go a couple days later than expected.
My doctors had a theory the low sodium levels could be due to low cortisol (a steroid in my body), but when that came back normal everyone was stumped. Fortunately, I canceled my flight at an opportune time because on the day of my departure, I felt worse than I had ever been. I was nauseous, had no appetite, and anything I consumed immediately went in one end and out the other (…there’s no way not to be gross about stomach stuff). As this progressed throughout the day, I grew increasingly impatient that there was no plan of any sorts from my doctors. My neurooncologist at UCSF was out for the whole week. She had instructed me to use the on-call doctor for any concerns, but I defaulted to my doctor in Boston given my long partnership and trust in him. He, however, was being unusually unresponsive.
In my state of being sick as well as frustration about whether I would make it to my respite in Baja, I had forgotten about what I had discussed time and time again with my Boston doctors about being treated at UCSF. While my doctors in Boston could advise on larger treatment decisions, day-to-day treatment needed to be in the hands of UCSF. Doctoring is a local task. At about 10pm EST both my primary care physician and my Boston neuro-oncologist reminded me to do what my UCSF doctor had already instructed: Call the on-call physician.
Within a minute of calling UCSF, I received a callback from the on-call doctor. She gave me a set of instructions, told me the parameters for when/if I should go to the emergency department, and reassured me that we would reconnect after the test results. Having a plan in place took a weight off my shoulders. This breathe of fresh air brought clarity that perhaps going to Baja, even if I felt better, was not the best idea. Laying out in the sun, swimming in the ocean under the sun, riding on a boat for hours under the sun, were all activities I had been looking forward to, but were the last thing I should do if my sodium levels were topsy-turvy.
My sodium went back up to where it was before, but below normal. Physically, I felt better, but I still canceled my trip. There was some relief in making a decision rather than consistently ponder whether I could go, but I was sad. All my plans to separate myself from my illness had crumbled.
I had the idea to write this blog post for a while but felt too sick to do it. That’s kind of funny, too sick to write about feeling ‘sick of being sick.’ For a long time, I have written about my strong belief in the physical-mental interconnection of health. Due to my physical sickness, I’ve been feeling down, which I think in turn has made my physical symptoms, particularly fatigue, even worse.
Two days before writing this, I felt better than ever, and that feeling remained for the next day too! With the new energy I had, I didn’t want to write this post about being sick, so I added it to my list of posts to write later (…of which there are more than thirty). I walked a few blocks to the nearby café and worked on a keynote speech I am doing for Dana Farber’s Young Adult Conference in a week. I had already been working on a speech idea, but the process of being sick all month gave me another idea that you’ll get to hear/read soon. Even though walking a block felt like a mile and working a few hours led me to needing to lay on the couch for a while, I was on the mend.
Or so I thought. I write this post after a whole day of feeling (…excuse my writing) ‘shitty’ all day. And I’m glad I took this off the list of posts that usually never end up getting written because these emotions are real. It has been my life for an entire month, and I have no idea how I’ll keep feeling because I don’t even have my next sodium levels back.
I’m not writing this to draw sympathy from others. It’s simply a means to let out my pent-up frustration and stay true to my promises that I’ll be vulnerable and honest in my writing. We still don’t know if all this is due to my treatments; past viruses; combining treatments; doing treatment while having a virus; or merely complete coincidence. I went into my treatment plan knowing what I’m doing is experimental and before what even a stage one (i.e. testing for toxicity stage) clinical trial would be. I can withstand feeling sick, but the repetitiveness of it has been purely exhausting.
Fortunately, I am going home soon to see my family, my partner, but most importantly join other young adults with cancer at Dana Farber’s conference. Even if I’m still feeling sick, I always find it rejuvenating to be in spaces with other young adults who ‘get it’.
I hope my next post will be chipper with a dash of higher sodium levels, but for now, this is how it is.
As of posting this, my sodium levels are finally back to normal and I have been feeling much better than before! I still need to hydrate with electrolytes and monitor how I’m feeling, but hopefully when I return from Boston my labs will remain stable and I can go back on the targeted therapy.