Other Side Effects of Cancer

I actually started writing this last week, but I tend to get sidetracked easily. That may or may not be a cancer thing, but we can blame the cancer if it’ll make me look better. Stupid cancer, making me watch a whole season of Suits in a day. This post is actually coming on the heels of my best recovery, so instead of talking about treatment and medical side effects specifically, I’m going to whine about other stuff. I think I’m entitled to whine a little bit.

Worry

My worry has heightened since I landed in the hospital with a neutropenic fever. I have never been a germaphobe, I have never been worried about getting sick before. Now that I pretty much have no immune system most of the time, I have to think differently. I have a thing of hand sanitizer in every bag and every coat pocket that I own. I have a hard time bringing myself to leave the apartment, and that’s only partially because I’m lazy. Every time I see a crowd of people, all I can think about it how germy they are. My desire to avoid winding up in the hospital outweighs my desire to leave, even when I’m stir crazy.

There are also scary side effects that hang overhead. One of the chemo drugs, Bleomycin, causes lung issues in a lot of people. Every time I so much as cough, I wonder if it has anything to do with the Bleomycin. All the drugs cause my blood counts to bottom out so I take Neupogen to raise them. But Neupogen can also cause lung scarring, so I can’t take too much of that. Neupogen also causes (sometimes debilitating) bone pain, which Tylenol doesn’t seem to help. Reading up on lymphoma doesn’t provide any comfort now, it scares me. It annoys me. I was trying to figure out about the odds of getting Bleomycin-related lung issues and learned that many people who have taken Bleomycin are told that they’re never able to SCUBA dive because of the possibility of oxygen toxicity.

I’m getting a PET scan this week because, if all is going according to plan, I’m at the halfway point. I know the lymph nodes are not huge like they once were, but until I hear from the doctor that the scans are clean I’ll be nervous about it. I keep feeling my neck, trying to see if there’s anything there that shouldn’t be and I just can’t tell. I know that’s probably, hopefully, a good sign, but I definitely have a case of scanxiety.

Loneliness

When I’m not on medical leave, I work as a teacher. I have 90 students. That’s a lot of interaction with a lot of people. Guess how many people I regularly see now. Not only did I have to go on medical leave from work, but I had to forgo a lot of other things I enjoy. I can’t commit to pottery class. This is the first year I didn’t even audition for the Shakespeare show at DeBaun because I knew it would be too much of a time commitment. I can’t RSVP yes to a party because I don’t know how I’ll feel ahead of time, even if I try to meticulously plan around treatments. Which I do, I even pull out the calendar. It sucks. At times people plan on seeing me and then get a cold and don’t want to infect me. (Trust me, I do appreciate that.) When I do see people, we mostly talk about me having cancer because it’s the big, bald elephant in the room so what else are we going to talk about?

I know people care about me, probably more people than I even realize. I know friendship is a two-way street, and I don’t do an exceptionally good job of maintaining, let alone starting, those relationships. I know people have their own lives. I know that while I was writing this, my mom called me, and then Hannah called me, and then Zach called me, all of their own volition. But sometimes I just feel so pathetically lonely. (And unfortunately, I don’t have a funny spin for that.)

The Warrior Culture

There is a culture surrounding cancer rooted in surviving and being a warrior. Everyone is rooting you on and, as the patient, you feel like you have to live up to that. It’s not just going to a doctor and getting some medicine every other week. It’s a fight. Of course I don’t want to be seen as a weak person. I wanted to be the trooper at work and in my life who is perceived as a beacon of strength. I pretty much have a guarantee from the doctors that I’m going to walk out treatment in a couple of months cancer-free and never look back. That’s something not every cancer patient gets. I still feel weak. Nothing about this experience makes me feel strong.

Fatigue isn’t constant; it hits suddenly and inexplicably. I had to sit down in the shower one day last week because I suddenly started feeling too weak to stand. Showering is not a strenuous activity, especially now that I barely have to do anything. I’m in that sweet spot where I don’t have to shave my legs (not that I would anyway, let’s be real, it’s January), but I still have my eyebrows. I need to shampoo about as much as Mr. Clean does. And yet, I got winded in the shower.

Walking around IKEA in a mask because I’m worried about germs and another stint in the hospital is not fun. (Still worth it to go to IKEA.) It’s hard not to notice just how many people look at you when you are so conspicuous. Once I get hot from walking around (which is just about as much exercise as I get even when I’m not going through chemo) and take off my hat, all elements of mystery are gone. There goes the cancer patient, picking out new pillow cases for her couch and a pretty box to put all her medications in. I know that no one in that IKEA saw me and thought that I was strong, but I have a feeling that many of them would have told me that I was if they knew me. Maybe I’ll be more into the culture, when I’m officially a survivor. We’ll see.

Everyone is an Oncologist

It turns out that I didn’t need to seek out oncologists that specialize in hematology. Because the oncologists may know a lot of stuff, but everyone else seems to know more. The amount of unsolicited “medical” advice I’ve gotten is astounding, and often conflicting with what my doctors say. I know people are well meaning, but it winds up being overwhelming, and then awkward when I sort of blatantly ignore your advice.

My vegetarian diet stays. It turns out, the doctor doesn’t feel like I need to change a diet that I’ve maintained for a decade just because I have cancer.

Sugar doesn’t feed cancer. If Flavor Ices bring me joy (they do, please buy me some!), then I can eat them to my hearts content.

I’m not going to start taking any vitamins or supplements unless cleared by my doctors. The amount of drugs I’m given is not random. Supplements can affect the toxicity of the chemo drugs. More toxic is bad. Less toxic is also bad.

It’s a sweet gesture to give me candies because sometimes I get a bad taste in my mouth. It’s helpful to recommend things that I might like eating because sometimes I have nausea and nothing seems appealing. Telling me that I need to do XYZ because it’ll help cure my cancer seems like an overstep (and probably not true). And I know I’m being candid with the details and inviting people to read about what’s going on here, but that’s not because I’m seeking a second opinion from people without a medical degree. Even my ENT doctor wouldn’t give me medical advice related to the lymphoma once he diagnosed me because he’s not an oncologist.

Here’s a short and sweet one to end on.

My “Good” Fortune

Sometimes I’m surprised when even the doctors get in on this. “If you had to get cancer, this is the one you want.”

Remember that sentence, and then remember not to say it to me.

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I totally underestimated how much chemo would suck

Plenty of people have been telling me to keep positive, and to a large extent I have, but I have been truly having a difficult time. I thought I would spend 4 months feeling run down, but well enough to work. The doctors told me that many people continue to work. How can that even be true?! I’ve only had 3 out of 8 treatments. I’ve been in the hospital for four years days because I got a neutropenic fever. The other day I officially requested to be put on medical leave because I’m spending more time recovering from treatments than I am at work. And it’s supposed to get worse???

On Wednesday I got a port-a-cath placed in my chest so I don’t have to get treatment through an IV in my arm anymore. I will say that it made the treatment on Friday easier and a bit faster. The nurse of the day said I would love the port, but I think the best I can muster up is a begrudging acceptance of the port. I guess it’s good to be able to use both my arms on treatment days and the medicine didn’t burn going in, but I wouldn’t call it love. Jack certainly shouldn’t be worried.

On New Year’s Eve, I wanted to go through with plans to go to my cousins’ house and while I was there, I was pleasantly surprised with my ability to eat a normal dinner instead of picking at it like a little bird. Then I crashed on their couch for the rest of the night and woke up in time to ring in the new year.

We spent the early part of January 1st hanging out at my parents’ house before my mom drove us back to Hoboken with a cooler stocked with lentil soup, vegetable soup, and potato soup. That day I wasn’t really able to eat anything. I picked at some lentils and rice and ate two small pancakes (no syrup because sweet things have been turning my stomach). At some point, back in the apartment, I started really not feeling well. I asked Jack to make me a smoothie, but I only could manage a few sips. I took my temperature and it was 99.5, which is not considered a oncologic fever (which is 100.5 at my cancer center). I fell asleep on the couch and woke up with the chills. A neutropenic fever is considered a medical emergency and this time my temperature was 101.5, which resulted in us taking an Uber to the ER.

We got there at 5:30 pm and I was immediately admitted. My parents made it to Hoboken shortly after and met us in the small isolation room in the ER. They took my blood for blood cultures and started running tests to try to find a possible cause of infection. While in the ER my fever spiked to 102.8 before it finally broke. I didn’t get put in a room until after 1 am.

The one tiny perk about a neutropenic fever is that you’re given a room to yourself. The nurse showed Jack how he could put two chairs together to make a sort of bed (did she even notice how tall he is?) and he lasted like that approximately 1 second before he moved himself to the empty bed in the room.

This was my first overnight hospital stay and I seriously thought that it would be more restful. They wake you up at like 5 in the morning to take your vitals and draw your blood. The nurse tried to draw blood out of my port and for some reason it wasn’t flowing well, so she had to call in a lab tech who drew it from my hand (because he couldn’t get a good vein in my elbow, which is why I need the port in the first place).

No doubt you want a play-by-play of all the fun I’m having at the hospital, but for my own sanity I’m going to breeze through the details. These past four days have dragged by. They were filled with a lot of antibiotics, IV fluids, and Psych (which is thankfully on Amazon Prime video). My family was kind enough to endure my moodiness in the interest of keeping me company and from going insane.

I’m screaming on the inside.

They apparently didn’t start testing for the blood cultures until the morning after I arrived and they would take 48 hours to get a final result. One doctor said I’d possibly be here until Friday. It’s Friday. I’m ready to be sprung.

At least my shackles help prevent blood clots.

On Wednesday I was told I was no longer neutropenic. That means that my visitors, doctors, and nurses no longer needed to wear masks around me, but I was able to get a roommate. (Jack got kicked out at like 11, and I’m sure he was secretly relieved to not feel obligated to sleep at the hospital for the third night in a row.) She was there when I woke up on Thursday. She had a cell phone with actual buttons and she kept the volume on her phone all the way up so I could hear the tone of the buttons every time she texted someone, which was a lot. She was thankfully released later that day. If it couldn’t be me, I sure was glad it could be her.

Everyone kept telling me I was better off not getting released on Thursday because of the snowstorm, but I would have walked home in my hospital gown if they would have released me. Jack worked from the hospital so he could keep me company and played Gorogoa with me when I could not watch any more tv. He got kicked out that night too because of the sudden rule that female patients can’t have overnight “male watchers.” Jack, gem that he is, came back the next morning until he had to leave for work. My parents came to watch me write this and hopefully take me home. I got the all clear from 3 different doctors, I’m just waiting to be released.

Side note: Rebecca painted my nails on New Year’s Eve and they still look really good. I’ve spent a lot of time looking at my hands. I was really bored.