I have one week. One week of not being plugged into anything. One week of not being pumped full of anything. One week in between antibiotics pump/drain combo and chemo. Chemo starts 9/3. I have one week.
The day they unplugged the pump, I went jogging. I didn’t warm up. I didn’t stretch. I just went. I could barely walk the next day, but it was so worth it.
I went to physical therapy that first day of being unplugged. My PT couldn’t believe it because my lymphedema swelling magically went away.
“Where did it go?? But where did it go??” she asked. She couldn’t believe the swelling was just gone. I had taken my wedding ring off for fear that I would swell up so much that I wouldn't be able to remove it. By the Friday after they removed the pump, the swelling was gone and I could put my ring back on without any trepidation.
My PT specializes in public health, so she’s trained in massaging scar tissue. When she took me into the private room to do some scar tissue massage, I told her that my left boob is shriveled like a guy’s balls in cold water. If she had been drinking, she would have spit all over me. It looks like an enraged Hulk punched me in the left boob. Chris said it looks like my boob is winking at him. I’ve been telling people that I was deconstructed, reconstructed, and then deconstructed again.
Because of the lymph node removal, I have very limited mobility in my left arm. Every time I have physical therapy, though, I get a little more range of motion. I couldn’t raise my arm in front of me, to my side, or God forbid, up. One of my goals for PT is to be able to shave my armpit. That’s all. Not that I can put away groceries or blow-dry my hair. I want to be able to lift my arm enough to get in there with a razor.
During my one week, I had my PCP appointment. My doctor asked if I was depressed.
“I probably should be. Surprisingly, no, not really.” He asked if I wanted to meet with the psychologist. “Yea, probably. I guess I should.” He also recommended an anti-anxiety medication (which we’ve been playing around with anti-anxiety/anti-depressant meds, but I usually end up quitting them after 9 months to a year because of the side effects). I said I’d try it.
Wednesday of my “one week” was when I started the meds. I didn’t sleep Wednesday night. Like at all. I was a zombie on Thursday and couldn’t jog. I tried it again. I again didn’t sleep on Thursday night and again was a zombie on Friday. I decided I’d give it one more try, but it was really starting to piss me off. Again, I didn’t sleep Friday night and was barely functional Saturday. I decided not to continue, as I’m starting chemo on Tuesday! Those stupid pills robbed me of half of my “one week.” I refused to continue.
Sunday and Monday were my last days of freedom before chemo. I jogged and felt glorious.
My sister took me to chemo on Tuesday. She lives about an hour, an hour and a half away (depending on traffic), so she had to leave her house at the butt crack of dawn to get me to my 9 AM appointment. We were there until 3 PM. It was a long day, to say the least. I was exhausted by the end.
I was instructed to take my anti-nausea meds around the clock. They were needed. After the chemo treatment, they attach an iPOD to my arm like a nicotine patch. Okay, so it’s not an iPOD, but it does play a tune. It’s the Neulasta OnPro, which injects me with medication 27 hours after chemo to stimulate the production of white blood cells. So I can’t take shower while this thing is on me. I’ve really gotten used to the whole no-shower-thing. It’s annoying, but familiar. Had that thing not been on my arm, I think I could have jogged on Wednesday. I felt okay.
Thursday felt like someone had turned gravity WAAAAY up. I felt so heavy. Slow. But I was functional. I can’t say the same for Friday. Friday after chemo was awful. It felt like someone had pummeled me with rocks. I wouldn’t have been surprised if there were bruises all over my body. My mastectomy site felt like someone was tearing it apart. It felt like the Hulk or Thanos had lifted me up under my arms very roughly and squeezed. The whole band around my trunk was in pain. It was an abominable pain. And I flip-flopped all night Thursday night because I couldn’t get comfortable.
Saturday was a little better. Chris took me to the movies. I forgot my mask and was scared of being around crowds, but thankfully the theater was virtually empty. I think there were about 6 others there, so it was okay that I forgot my protection.
The whole next week was okay. I didn’t jog, but I did savor the no-pain. I watched my hair like a hawk, as I’ve heard the first treatment can make it fall out.
I didn’t really see a lot of hair fall out until about 2 days before my next treatment. They’re spacing out these first treatments every two weeks because they pack a wallop. If you search “red devil” chemo, that’s what my first 4 treatments are. When I saw the hair shedding starting to increase, I wanted to save my braids. Anyone who sees me on a daily basis knows that I usually wear my hair in two french braids. It’s so much more comfortable than a ponytail. So when I saw my hair starting to pull out in chunks, I knew it was time to cut the braids.
And that’s exactly what I did. I put my hair into two braids and chopped the braids right off. I don’t think I can donate my hair because there is a little bleach in it, but I wanted to save my braids so that I could pin them to a hat if I so desired. What a freeing moment to chop those braids! I showed my PT the pictures and she said I looked like a toddler left with the scissors!
Somehow I cut my hair into the perfect style. It ended up so cute. I was only able to keep it for a week though. After my second chemo treatment, my head was balding and it wasn’t cute anymore. I had to shave it.
For my second treatment, the nurse practitioner prescribed me a steroid to get through those first couple days. It worked to keep the horrible pain away, but the roids came with their own set of side effects. They made it hard to sleep, and my resting heart rate was like 100. I don’t know if it’s better to have the one and half days of pain, or the four days of no rest. It’s a toss up.
After that second treatment, my twins came home from school with stuffy noses. I caught it too. I was told to call the infusion center with ANY symptoms. Like ANY. Congestion, cough, fever, etc. So Saturday morning when I woke up with congestion, I figured I would need to call. But they’re not open on the weekends, so I waited until Monday morning to call. I spoke to the nurse and she said I’m probably okay as long as I don’t have a fever. Then I got a phone call a little later from the nurse practitioner telling me they needed some clarity about my symptoms. Then the oncologist called and told me I should probably get tested for all the things (flu, covid, RSV, strep, etc).
I took my girls to the doctor on Wednesday, as they weren’t getting better. Turns out they have ear infections. I called my oncologist and she advised that I go get tested, but that I’ll need to go to urgent care. So I made an appointment right away for that same evening. Or so I thought.
When I walked into Urgent Care for my scheduled appointment, the nurse informed me that my appointment is for TOMORROW. But she said she can treat me as a walk-in. So instead of having an appointment that was supposed to start in 15 minutes, I’d need to wait for about 45 minutes. Oh yeah, and it was pouring down rain because this was right before Hurricane Helene.
When I got into the exam room, the nurse had me pull down my mask so she could do the strep and covid test. “Oh my goodness you’re beautiful!” she said. I’ll take it. I’m still a little new at this bald-head thing, but I’ve been trying to wear a little eyeliner and jewelry to make it look like I did it on purpose. When I was 15, I would've given anything to talk my mom into letting me shave my head. Now I’m trying to act like I’m just that much of a badass to be an adult with a Sinead O’Connor -do.
The urgent care was able to check my white blood cell counts, which were (no duh) low. No wonder I felt like I was going to pass out while driving through the rain. It’s rough when your WBC is low because there’s nothing you can do about it. It’s not like you can drink a cup of coffee to pep you up. Or eat a protein-filled burger. You’re just weak for weak’s sake.
Thankfully all of my tests were negative, but I did have fluid in my ear and felt like I had a sinus infection. My oncologist put me on a 5-day round of antibiotics. To be finished just in time for round 3 of chemo. I’m being pummeled. And it really friggin sucks.
Douglasville, Georgia