During the 19 months I was on chemotherapy for leukemia, I had many, many times when I needed help from someone for something. Sometimes I just wanted help, or wanted someone else to be in the room (I live alone)… but I refused to be a bother for anyone. My dad had taken care of my dog for the first six weeks I was in the hospital, and that was huge. My dog is my kid. I want the best for her at all times. When I’m not with her, there’s only one person here that I trust with her. And she loves her ‘grandpa’.
But I’m also a nurse. Granted, I’m disabled, and have been since 2004, but I keep my license and CEUs current. It’s my license, and I worked for it. I worked with it, and it’s something I never want to have to relinquish. I am a nurse…not I was a nurse. I’m the one who is supposed to take care of other people. I’m not supposed to need someone helping me. Nursing, as a profession, fosters an absolute resistance about self-care. Nurses are punished for taking sick days (‘up to, and including, termination’). We are taught that we don’t matter. We can have worse lab work or tests than the patients we care for, but we have to be on the clock unless we are absolutely physically unable to walk down a hallway, and a doctor will sign off on that. That’s just how it is to be a nurse. And that doesn’t go away.
My dad’s friends came to visit me when I was first admitted for the initial six weeks, and that was really nice of them. I appreciated it then, and now. Because of being on disability, and living somewhere that personifies “out of sight, out of mind” to the hilt, I never saw one of my co-workers after I resigned. I’m in contact now with the folks I worked with 1200 miles away , and it’s never awkward to reconnect. People here are different. I didn’t have a usable computer until a year ago, so that wasn’t an outlet, either. I’m so thankful for it and the ability to write what’s on my mind if I don’t want to bug anybody.
My dad would have driven me to my chemo appointments, but I wanted to seem like I was doing fairly well. I was making the expected progress, but chemotherapy is brutal. I had arsenic fifty times… two 25-dose cycles. Monday through Friday for five weeks, times two. I had to be on telemetry (heart monitor) so couldn’t be at the outpatient chemo clinic, but in a regular hospital bed, and went home after each dose. On the first day of the last week of arsenic, I had shingles, so it had to be postponed for a couple of weeks until the blisters healed up. After that, I had a brief course of IV chemo (had to stop because of issues with my heart functioning after one of the medications) and then oral chemo (three different pills in three different dosing schedules) for eleven months. When I was at my first outpatient IV chemo after the arsenic, there was a tornado. It was several miles from the clinic, but we all still had to hunch in the hallway until the ‘Code Black’ was over. It wasn’t just show up and get on with things.
Chemo is really painful. I didn’t realize that (And what do you do? Hurt for a few months and live, or wimp out and die?). I’d never worked with oncology patients other than when they came in for surgery, or were there for comfort care only. I didn’t know the ins and outs of chemo. My mom had chemo for lung cancer (after both breasts had been removed for cancer, and before her brain cancer surgery and radiation). She never mentioned the pain, and I was living 1200 miles away, so I didn’t see it. Maybe they’re all different. I live with chronic pain, so it wasn’t about being a pain wuss. It’s really intense. But I wanted to seem like I was handling it all OK. I spent a lot of time thinking about the ‘what ifs’. Alone.
Then there were the shots to boost my white cells. Those caused really bad bone pain. As in ‘nothing helps’ kind of bad. I cried a lot after those shots; about 8-10 hours after I got them, the ‘spasms’ inside of my bones started. I cried alone- and that’s on me. I guess there wasn’t anything anybody could do; I’d mentioned the pain to my oncologist, but I guess I didn’t speak up loudly enough. Those shots should come with automatic Schedule II narcotics. Period. I thought my right shoulder was shot; that I’d torn my rotator cuff. It hurt that much. When I’d reach for tissues when in bed at night, I’d hurt just moving my arm towards the box. My tailbone felt like I had a spike going through my skin into my bones.
All of that being said, I still did my own shopping (although I did have some things shipped from Walmart, like paper goods and cleaning supplies), which was very painful. I did my own laundry, and basically kept my apartment up as best I could. I’m limited anyway, but the chemo added a component that I never anticipated. I went to my own appointments on my own. My dad would have helped with anything. I knew that. But for some stupid reason, I had to be all independent about the whole cancer thing. Protect others from how hard it all was.
If I had to do it again, I’d speak up more. I’d ask for ‘better’ pain medication. I needed it for the physical pain. And I got nothing but pain of being isolated from doing this cancer thing on my own. My dad went through his own feelings during all of this, but we didn’t talk about it much- he’d want to know about what I found out at appointments, and did take my trash to the dumpster, which was a huge help; carrying those bags hurt a lot. He’d taken care of my mom (and never complained) for the last 15 years of her life, minimum. She ended up with dementia, and was a handful, but he was so good with her. I wanted him not to have to worry about me (as much as possible…he’s still my dad, and worried just because of that). He was there when I had my Hickman catheter inserted; I needed a ride there, and home the next day. But unless I had to have someone with me, I went alone. And in the end, it just felt lonely. And misunderstood, because I never said what I was really going through. I didn’t let anybody understand. Maybe some of it ties into me hating cancer so much I didn’t want to let anybody into that part of my life. Maybe it’s partly the “nurse thing”, and not ever having it be OK to need help, or support. Or that I’d lived alone for 25 years by the time I was diagnosed. I always managed. I figured I’d manage with the leukemia as well.
SO what is the point to this whole blog entry? A couple of things. First, I needed to get it out there that I really screwed up having cancer. I b-o-m-b-e-d. I’m going to be OK, but I wasn’t OK for over one and a half years. I shouldn’t have kept quiet. Second, what can others do to help someone who is bullheaded? Just do stuff. A hot meal would have been great; granted my taste buds were a bit weird most of the time, but something bland like mac and cheese, or beef stew would have been a five-star dining experience AND not painful to cook. Just drop off some milk and cereal, or frozen microwave dinners that the person can make when they are hungry.
If you know someone well enough not to listen to them say “I’m OK”, just do stuff; you’ll know what is right (but no flowers or plants if they’re on chemo and their white cells are low– the spores can kill them; also no raw fruits and veggies that aren’t peeled; if their absolute neutrophil count is OK, so are living plants and raw fruits and veggies- they will know their ANC if it’s an issue). If they don’t want company, you’ll get ‘the look’. Otherwise, if they let you in, you might be the only person they’ve seen in the flesh, other than doctors and nurses, for weeks. If you have a co-worker that is sick, don’t forget they exist. It hurts to have everything upended, and then not see familiar people.
People want to support diseases and causes. And that’s fine. But don’t forget the daily life of the person you know. Maybe all you can do is call them on the phone- that’s great ! A familiar voice is wonderful! Or touch base on FaceBook if they’re well enough to be on the computer (sitting up can be excruciating, so if they don’t have a laptop, that might not work; I’m still working on getting one donated for a friend of mine near Dallas). That’s easy enough, and who doesn’t like to hear from friends? Just let them know they aren’t alone on a very scary journey.