… and more chemo.
Looking like hell and feeling like it. Suffering from fevers, chills, and feeling like death warmed over. Before realizing I was having fevers. Complete with cold sore from chemo #1.
Back to the hard parts before they disappear entirely from my brain. Humans are good at that. Erasing traumatic parts. Making life more palatable.
Remember last time when I mentioned I was cold because I had no hair. Yeah, I was wrong. I was cold because I was having fevers and didn’t realize it. Between round two and three, I had fevers. And I mean FEVERS. Over 40 degrees, for several days, fevers. All the cancer package stuff says “IF YOU HAVE A FEVER CALL YOUR TEAM.” “IF YOU HAVE A FEVER AFTER HOURS GO TO THE HOSPITAL.” Turns out, it can be a sign of sepsis. And do you know who survives sepsis? 1/3 people. You know who probably wouldn’t? A cancer patient.
Bundling up because I was so cold from buzzing my hair… not.
Oops! Turns out I was having super high fevers. That’s why I was so cold. What a dumn dumb.
So lo and behold, I realize I have a high fever on a weekend. That I’d probably had one for a few days. Hell, I probably had one after round one. I guess that’s why they wanted me to check my temperature everyday. Oops. #BadCancerPatient. On the Friday night, I had popsicles, liquids, slept a ton, etc. On the Sunday, I called the on call cancer number on all my pieces of paper. Said on-call thing told me to go to the ER. I got off the phone and thought about it. Do I really want to go to the ER and spend hours sitting there in the middle of a pandemic when I have literally no immune system, or wait until Tuesday when I’m scheduled to see my hematologist? After talking at length with Vanessa, my emergency nurse pal / constant health rep, we decided, no. I’m going to get this fever down. So… I did. Popsicles. Shedding all the blankets and hats and sweaters. Water. Lukewarm bath. All the things. And you know what — it worked. I still called my team on Monday. They said they’d see me on Tuesday.
My doctor agreed with me that I did the right thing. I managed that shit at home and told it who was boss. Then, chemo three.
After chemo 3, I had a CT scan with dye. This was going to show what happened to my lymphoma. If it was still trying to kill me. If chemo was working. For some reason, I had been doing a lot of visualizing over the weeks leading up to chemo. I had read about cases where people’s lymphoma would be clear by round three. I’d hyped myself up to be one of those people.
When my doctor came in he called me the fever queen. Asked if I’d had any that round, I hadn’t. Thanks be to the deities. Then he told me I couldn’t do chemo that week. My white blood cell count was too low. My heart dropped to my stomach. Then he told me about my scan. He had printed it out for me so I could see the difference from the hospital in February to the change after the third chemo. There, in front of me, were two black and white images. One with a tumour that was 8.3x8.2cm. That was trying to kill me. That made my whole body swell. That made it impossible to walk. That made me so tired I knew there was something wrong and wasn’t shocked when given the “C” word. Beside it was the scan from the day before. It was only 9mm. It was almost gone.
It’s weird, because where I should have felt relieved, I felt sad. I wanted it to be all gone. I wanted it to be nowhere. And I hated the idea of my chemo being postponed. I wanted this fucker gone as fast as humanly possible. So when I called my best friend and family to tell them the “good news” they were all overjoyed. Over the moon. I wanted to feel that, too but I felt, disappointed… let down. Not only was it not gone, but since my white blood cell count was so low, I would miss chemo AND have to start Neulasta shots. What the hell is that you non-cancer folk want to know? Well … I’ll tell you.
A week later I came back to see my hematologist, this time hoping to be cleared for round four. I was over my pity party that I still had 9mm of this fucker in my body. And had switched to the side of my family and friends, joy that there was only 9mm left you ungrateful wench. Joy that it almost looked like a normal CT scan. Normal. A word I have always hated, was now the only thing I wanted to be.
CT scans showing my giant tumour above (scan from February 11, 2021) and my teeny tiny tumour below (April 22, 2021) Exactly three months after my diagnosis of Aggressive Non-Hodgkins Lymphoma. There are 60 sub-types of lymphoma. Mine is called Diffuse large B-cell lymphoma, or DLBCL. Also, no, looking back, I have no idea how I was even barely breathing with the size of this monster.
They did my bloodwork, I was cleared for chemo. And a few days after chemo I would inject this little fucking needle into my stomach and it would boost my immune system, and thus my white blood cell count, so I wouldn’t have to postpone another chemo. Good. Because I wanted this mother fucker gone. I get my chemo. I take my cocktail of drugs before, after and during chemo. The ones that stop allergic reactions. The ones they call the red devil (no, I’m not joking, google it). The ones that make it so I don’t barf or shit myself. A few days later I go into the bedroom and say “okay, I’m going to do it.” I had showered so I was clean. I had read the instructions. I could do this. Look at all the shit I’d been through up to this moment. Surely, I could pop a tiny little needle into my stomach. As I sit on the bed, in the nude, I psych myself up. You can do this. You can do this. I start to sweat, a little at first, then a little more, then profusely. When I get to the profusely stage, I call out to Willis. “Willis, I can’t do this.” We had had a previous conversation about how he didn’t want to give me a needle. Maybe he was having flashbacks to the bone marrow sample needle — who knows? He walked into the bedroom, took one look at the needle and said “OH! That’s not bad! That’s nothing like what I thought it would be!” Within a few minutes I had psyched myself sweaty self to get him to do it. I pinched my stomach fat. He jammed the needle in at a 45-degree angle. Then he left me to get dressed and clean off my sweat.
To all of you out there with uteruses who go through IVF, I am in awe of you. I know how many needles you have to inject. How many hormones you have to endure. How many awful, difficult, painful moments you go through and let me say, I don’t know how you do it, because this one stupid little needle that I only had to have a total of THREE times, had me sweating like that time I was in Italy during a heat wave where there were literal fires.
So, Neulasta, is the name of this shot I had to take. It costs $3,000 here in Canada for the generic name brand (which yes, is the one I got). 3,000 fucking dollars. Because of OHIP + medical coverage we only paid $12. On my Lymphoma Facebook Group some of the Americans on there have to pay $12,000!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! OR MORE!! !!!! Sometimes they have health coverage that covers a portion, but it’s never as low as $12. How in the hell anyone with cancer is alive down there, I will never understand.
These are the possible side effects of Neulasta:
bone pain,
pain in your arms or legs, or
injection site reactions (bruising, swelling, pain, redness, or a hard lump).
aortitis, which is inflammation in your aorta (the main heart artery)
capillary leak syndrome, which is a condition that involves tiny blood vessels leaking
leukocytosis, which is an increased level of a type of white blood cell called leukocytes
allergic reaction
acute respiratory distress syndrome
glomerulonephritis
ruptured spleen
So… that’s fun. I was lucky and only got one side effect: bone pain. And here’s what I’d like to tell you about that. A few days after my first Neulasta shot, I called my team, because I was in so much pain I was on the verge of tears and as a person with a very high threshold for pain (hello vaginally delivering twins at 38 weeks + 1 day and not getting an epidural until almost ~8cm) this was quite disconcerting to me.
Nurse: “Hi Danielle”
Me: “Hi, this pain is brutal. My bones hurt and I have aches and pains and I can’t get comfortable and and and and… Is there anything I can take?” (Sidenote, I could only take Tylenol because anti-inflammatories + ibuprofen can cause your platelets to drop, which is exactly not what you want when you’re going through chemo.)
Nurse: “Yeah, that’s a very common side effect. You can take Tylenol.”
My inner monologue: LIKE A WHOLE FUCKING BOTTLE?
Nurse: “Sometimes the dr will prescribe codeine. Let me check and call you back.”
Me (writhing in pain on my bed): “Okay.”
Ten excruciating minutes later, the nurse called me back to say that no, my doctor won’t prescribe it, so take two Tylenol.
Cool cool cool cool cool cool cool.
I would learn through my cancer forums that the trick with this fucking drug is to take Clairitin. But you have to take it three days BEFORE the shot. For some reason this decreases the bone pain. To ensure I’d never miss a chemo again, for the following three rounds, Willis would have to inject sweaty me with a needle as I winced and inched away from him because, sorry Willis, but you’re no nurse. This guy doesn’t know how to nicely jam a person with a needle and it hurt. Which I didn’t want to tell him, because this guy was jamming me with a needle, all to get through chemo, while caring for me, our children and ALL OF THE THINGS, all in an effort to make sure I didn’t die.
The following two Neulasta shots, which while horrible, didn’t have as painful side effects when I was taking the Clairitin. By weren’t as painful, I still mean they were painful. Walking up the stairs hurt. I had a hard time sleeping because my whole body felt tender. Especially on one hip. It just HURT. The best way I can describe it is I could feel a literal buzzing in my bones. Like I could actually FEEL my bones. And it was weird and gross and uncomfortable and we are not supposed to feel that. It was worse in my joints, where bones met other bones. And I hated every minute of it. Though, I did recover faster from the following chemos and didn’t feel like shit for as long, so that was worth it.
The rest of my chemo cycles were a blur. I remember four being particularly awful. I remember it being so bad that I dreaded five and teared up the night before because I was afraid of what was waiting for me on the other side. Up until number four, I looked forward to chemo day. I was blasting that bastard out of my body and after round three, I knew she was almost gone, which made the whole ordeal a lot easier mentally.
I remember that after chemo four my period was gone. They told me after I finished chemo that it could be a year before we’d know whether it was going to come back at all or if I was menopausal. 72 days. I had a grand total of 72 without my period because in this family, we menstruate, we procreate and we’re in menopause by 40. Holy hell. That was the best thing about cancer in the end, no periods for a while.
And why yes, my first period DID return on a camping trip when I had nothing with me. And we did have to go to a random general store and buy Israeli pads for $8.99 (for a tiny pack) because they were literally the only pads they had.
Oh and yes, my second period came 8 days late at an amusement park, on another camping trip and went through my underwear and onto my leggings. And yes, I had to send my 6-year-old out to daddy to grab pads from the backpack because there was so much blood I couldn’t do it myself. At least this time, I HAD some fucking pads.
I remember after round five we went to my sister’s to go swimming. Usually I’d make my bed a cave for a week after chemo, but this time, the weather was super nice, the kids really wanted to go and it was our wedding anniversary, so I wanted to do SOMETHING resembling fun. My brother-in-law looked at me at one point and said “poor you.” And I was like, oh no, it’s okay, I’m fine. My sister and brother-in-law kept asking if I needed anything. I said I was fine. Maybe a water. I remember thinking “geez, why are they so concerned? I’m totally okay.” Eventually we left because I needed to go home and nap. We all had fun. But looking back, I get it. I didn’t look well. No hair. No eyebrows. No eyelashes. And in general, my skin was the wrong colour. There was no light in my eyes. No pep in my step. Poor me, indeed. I would’ve felt the same.
As I mentioned a few posts ago, I’m on the other side of this now. I’m 3.5 months remission and hoping remission is the only word I’ll ever hear for the rest of my life. Soon, I’m hoping to start writing about the after parts. The whole “so now you’re a cancer survivor” portion. I’ll get there eventually. I hope if you’re following along, you’ll stick it out for the rest of it. To find out what happens when you’re lucky enough to make it to the other side…