Honey, I'm hooooome!
They let me out Tuesday night. I should say "us" because my mom stayed in the emergency room with me the whole time and slept in a chair for two nights in a row. I swear I tried to talk her out of it. She wouldn't have it any other way. Starting over: They let US out. I learned a new trick involving q-tips and Vaseline for dealing with the mini nose bleeds. They rescheduled my port placement for next Tuesday. They told me that anyone who comes to visit us at home has to wear a mask to protect me from catching anything new. They checked my vitals. The shot they gave me brought my counts up over 250%. My fever dropped to 100.1, which was low enough for them so they kicked me to the curb, but not before my friend who is a nurse in the same hospital stopped by to say hello before her shift started. I loved seeing a familiar face and talking about not-cancer-stuff. I also love that my mom is getting to meet a lot of my Astoria family. I think (hope?) it puts her more at ease seeing in person how many good people are around me. For instance, my BFBF (Best Friend/Boss Forever) also stopped by to check in on me. She and mom already know each other well (A long time ago, BFBF and I drove down to Sea Isle City, NJ and met my parents there. We all drank and hung out and watched my rockstar sister, LL, play a gig at the O.D. We partied a little more than planned and mom, BFBF, and I ended up sleeping it off at a hotel. We had to make the drive back the next morning hungover and exhausted. Good times AND a great way to get to know someone quickly.) So this time we both got to see a familiar face. I got filled in on all the fun stuff going on at the office. I'll just keep telling you how great my coworkers are and gushing about how lucky I am to work where I do, so I'll move on. I was happy to go home. I'm sure mom was too.
We came home to two nice surprises. 1) containers and containers of good healthy meals and snacks. A mutual friend of David's and mine wanted to help and asked what she could do. I mentioned we could use a meal or two that we could freeze if needed so we'll have something good for us to eat on the nights we're too exhausted to cook. Oh. Em. Gee. We asked the right person. We told her our dietary restrictions and that we'd give her money for groceries. You guys, she made amazing dishes- some for us to share, some individually for each of us, all organic, whole, unprocessed food. There was a whole roasted chicken stuffed with garlic. There were roasted carrots, roasted cauliflower, mashed sweet potatoes, a warm potato & green bean salad with Dijon, a gluten free pasta dish with shallots, olives, tomatoes, & arugula. There was a Brussels sprout, apple, shiitake mushroom dish, and there was turkey chili. Our refrigerator was packed. It was like heaven. She is such a godsend. She's already making things so much easier on David. My mom ended up helping us out the next day by packing everything that was left into smaller portions and freezing a bunch so it will last. 2) a LOT of boxes from Amazon. I spent some time Saturday watching tutorials on YouTube about tying scarves, applying false eyelashes, drawing eyebrows, etc., and ordered all the necessary equipment. It all arrived while I was laid up. Later, my mom, my S.P.O.N.S.O.R. (Spiritual Person Of No Specific Organized Religion), and I sat on my living room floor- all wearing blue surgical masks- and went through all the boxes. It was so awesome getting the woman who gave me life and the woman who saved my life (She'd say it was God, not her, and while I believe that's true, she definitely was a big part of the process) in the same room together (finally). They, of course, totally got along and we had a blast at my "cancer shower." My mom coined that one because I sat there while they handed me boxes and watched me open them. Ha!
I needed some things from CVS, so my mom and I went together. She wanted me to stay in and rest, but I thought moving a little might be good for me. The booster shot they gave me affects the bones because white blood cells are produced in the bone marrow. Because of that my hips are pretty sore. Being in bed inside for 3 days straight probably didn't help either. Walking a couple of blocks outside in fresh air seemed like a good idea. I forgot after insisting to go, that I have to wear that stupid mask if I go out in public too. It was an ordeal for me. I was so self-conscious. My mother wore one too, either in solidarity or so she wouldn't get sick and be unable to help take care of me, or both. But whatever her reason, I was grateful for it. I don't think I would have worn it without her. I had a mantra running through my head the whole time: A cold put you in the hospital for 2 days. Imagine what the flu will do.
And THEN, my hair started coming out. It's not quite time for a full head shave (soon, though), but it was too long to manage so we chopped it. We put it in a braid and cut above it so I can donate it. I'm going with Children With Hairloss. They're non-profit and do not charge for their wigs. If you want to help my hair along on its way to becoming a wig, please make a monetary donation too! Here are some before and after shots:
Only a few people have seen it. I haven't left the house since Tuesday's unfortunate CVS excursion. Everything feels like a threat. I don't know what to take seriously and what I can brush off. I don't know what I'm taking too seriously and what I'm not giving enough attention to. I feel like the boy who cried wolf every time something comes up.
I already had another (very small) scare this week. I've had high blood pressure since I was 20. Up until 30, I refused meds, insisting I could bring it down naturally. I could not. Mine seems to be mostly due to genetics. At 30 my doctor explained to me that since I wasn't overweight, and was relatively healthy, my hypertension would not cause a heart attack in me. Unfortunately, a stroke was much more probable, and while it was not likely to kill me, it could cause permanent damage like slurring, drooping, loss of coordination, etc. And I, a just-turned-30-year-old woman on birth control with high blood pressure and a history of smoking moved into that non-life-threatening-stroke-that-could-permanently-disfigure-and-or-debilitate-me category. Checkmate, Doc. I'll take your g-damn medication. So I've been on that for 7 years.
For some reason or another, chemo lowers blood pressure. (Oh wait! I know why. It's because f**k me.) While in the hospital, I was getting low readings. Like 105/60. Medicated, I'm usually around 125/75. So that's pretty low for me. In fact they almost didn't let me leave because Tuesday morning's reading was 92/58, but they let me take a minute and try again so I could pass the 100 mark and go home. They advised me to stop taking my hypertension meds and keep an eye on my numbers. I listened to the first part, but not the latter.
Thursday, I woke up shaking and with a bad headache. I took an OTC sinus congestion pill, stayed in bed all day, sent out a few work emails, and took it easy. By 3:30, the headache let up, but I was still shaking- kinda like a tremor in my hands. I remembered the "keep an eye on my numbers" thing, and also that decongestants raise BP. So I pulled out my electronic cuff and got a reading. It seemed really high so I tried the other arm and got a similar number. It was 160/103. I found my meds, took one as originally prescribed, and sat down to meditated for 25 minutes to calm my heart down.
David talked me into calling the doctor's office. I spoke with her, felt better, and then broke down. Again. And my sweet, strong, amazing fiancé lifted me up. Again.
This so far has been the hardest part for me. The loss of self-reliance, self-sufficiency. I've been on my own for a long time. I moved to NYC 5 months after I turned 18 and have been taking care of myself since then. I'm not saying I did a great job. (Sara once discovered a half eaten moldy birthday cake -not a slice; one half of a whole cake- in the microwave...approximately 3 months after my birthday. Don't ask because I don't know. Maybe I tried to hide it. Maybe I tried to heat it up. I'm also not sure why the microwave sat unused for three months. I have a lot of questions too.) But the point is I was fiercely independent. I did everything myself. This new way of living; asking for help; crying on shoulders; wondering who to call for the latest crisis or favor; this feels needy. It feels dramatic. I feel like a burden. I feel weak.
I hate having to call Nurse Nicole almost every day because now everything scares me. Is a fever normal? How high is too high blood pressure? What about a resting heart rate of 97? Didn't you say the chemo drugs can damage my heart? And then feeling unsure about whether I should be scared or validated when the answer is no, that's not normal.
But we knew it'd be like this. We didn't know what exactly but we knew there'd be twists and turns. And I thought I was ready. I was at a point where I almost would have been disappointed if my hair didn't fall out. Like I was ready for the challenge. I got this. But it was an incredibly optimistic, conditional "Bring it!" More like, "Bring it, if you promise I'll live through it. Bring it, as long as my hair grows back. Bring it, and please let me keep my breast. Bring it, because you'll take it away after it's all over too, right?" But then it gets real. A common cold puts me in the hospital for two days or I run my fingers through my "super cute" new haircut and come out with fistfuls of hair. I back pedal. My confidence wanes a bit. Now I'm afraid to wash what's left of my hair because I'm afraid I'll lose it all, or at least enough that'll require that final shave. And I know. I know it's going to happen soon anyway, but just not yet, please. I'm not going to be ready. I change my mind. That roller coaster rhythm comes chugging back...no no no no no no no no.
People keep telling me I'm brave, but I don't have a choice. I have to scream, "Come at me!" and ignore the what ifs because I don't know what the alternative is. What else is there to do but keep moving forward? Curl up? Mope around sad and droopy? I can't afford to cry that much. Hydration is very important these days. The other day, I called cancer "a bump in the road." An older, much wiser friend replied, "It's a big bump. Don't minimize it." Lesson learned, Week 3. I'm taking it all seriously. I get it. I don't get to call the shots. This isn't going to happen on my terms. So you just bring whatever I have coming. I'll call Nurse Nicole as they pop up, and I'll wear the damn mask. 😷
Three final things:
- I set up a twitter account so I can shout out when a new post is up. There's a link on my contact page.
*I found another great place to send hair called Matter of Trust. These guys are good because they'll take ANY hair- no specific length; grey is fine; processed is fine. They weave it to make a mat or a broom and use those to soak up oil spills and to clean contaminated water. So if you've been wondering what to do with all that unnecessary back hair...just saying...
No one would dare call me out for not washing my hair for 4 days.