It’s been over a month since my last blog post because there haven’t been many medical updates. I finished my 7th Taxol treatment yesterday (5 more to go) and I have my next surgical consultation on September 26th. The first couple of weeks after my last post I was doing really well. I was able to go out with friends, my chemopause symptoms lessened up (I have only cried twice since my last post, thank you very much), and cancer wasn’t something I thought about or talked about daily. Since then, things have changed a bit but I’ll get to that a little later.
I don’t remember if I spoke about Taxol chemotherapy in the last blog, but it’s usually referred to as “chemo light”. This name is spot on if you’re comparing it to my last chemo, A/C, but it’s a crock of crap if you’re thinking this stuff is anywhere close to the word “light”. The loss of appetite, nausea, and dizziness that were associated with the A/C are mostly gone but Taxol has come with it’s own fun side effects. The cumulative exhaustion and pain are the worst part. Every week I feel weaker and my whole body aches. Sometimes it’s bone pain in my joints (mainly my knees and hips), similar to Neulasta, and other times it feels like most of the muscles in my body are cramping up. I have scouted all of the breast cancer blogs, forums, and websites to come to the conclusion that I am the minority when it comes to people suffering through Taxol. Most people say it’s a walk in the park and I envy them. It has been very frustrating and hard coming to terms with the fact that just because my body is reacting differently to chemo, it is not my fault. It does not make me weak. It does not mean I am broken. It does not mean I am lazy.
That last one is the kicker. Because I lied earlier when I said the pain is the worst part right now, the worst part is being stuck at home. I didn’t work last week and this week I made it until 3:00 on Monday because my hips were absolutely killing me. When you’re working, two weeks at home sounds like a vacation. No freakin’ way. The first week I cleaned the house a little bit each day, I paid a medical bill, I slept a lot, and I was able to see my friends for lunch one day. This week? This week I have barely gotten out of bed because I have nothing to do. The house is clean, the bills are paid, the dog is alive. I threw on a bra (you’re welcome fellow motorists) grabbed my keys and I drove for an hour last night. I drove and I cried and I had no idea where I was going I just knew I couldn’t lay in bed anymore and I couldn’t watch more Netflix or fold more laundry.
The first thing I did today was google things to do when you’re on bed rest. I realize I am not on bed rest but I really am restricted on things I am able to do by myself during the day. One day last week I tried to go get 6 things at the grocery store because I thought working my legs out may help with muscle aches. I got there, was frustrated with myself because I couldn’t remember where anything was and then out of nowhere my knees felt like they had exploded. I leaned against the cart and turned the aisle to find the most random bench in the middle of a grocery store. That bench was made for me. I sat down and immediately was able to get a hold of someone to come and get me. Luckily it was after 5 or I may have been stranded a bit longer. Which would have sucked, by the way, because people hardcore stare at you when you’re sitting on a bench in Walmart. All of this to say- I have restrictions. People have told me to go on walks, go to the pool, go grocery shopping, take the dog to the park but I don’t think they understand that I have to be really mindful of how long I am on my feet and how hot I get. I’m not saying I can’t leave the house by myself. I try to run small errands I just have to let Nick know where I am going in case he can’t get in touch with me or I need to be picked up. Yeah- it’s really fun when you have to check in with your husband like you’re 15 years old. I’m just grateful he is so supportive and encourages me to do the things I want to but also reminds me to be very careful.
So, let me tell you my top three favorite suggestions of things to do while you’re on bed rest that I gathered from websites (one of them called itself a “fun guide”). Ready for this?
- Plan your funeral
- Shop online
- Write Yelp reviews
I read those and I laugh every.single.time. Maybe it is just me but the only thing that sounds anywhere near fun to me is online shopping. Let me tell you my beef with each one.
- Maybe it’s because I have cancer but funeral planning does not sound fun. Funeral planning sounds like possibly THE worst idea to give to someone who is alone and cannot leave their bed and/or home. My only guess is that maybe if you’re on cloud 9 from that pregnancy glow that this somehow wouldn’t depress you? I’m going out on a limb and saying no.
- As a former social worker on the oncology floor, I’ll say that I am an absolutely huge advocate for future planning when it comes to end of life arrangements. It was always heartbreaking to watch families try and guess what their loved one would have wanted after they had passed. Do them a favor and have this stuff in writing, whether you’re healthy or not. Just DO NOT suggest someone do this alone, for fun, while they’re stuck in bed or in their home.
- Shopping online is fun. I prefer it over real life shopping and I’m really really good at it. Unfortunately I have not been able to go to work lately which means we are living on one social work salary, paying two sets of student loans, and paying medical bills. I won’t say we’re struggling because we aren’t at this point, but I will say that I am still having guilty feelings about using money when I’m not really bringing any in. I’m getting over this and trying to remind myself that this is temporary but it still sucks. I want to feel like I am in some way contributing to the family. Other than my mad baking skills which I’ll touch on later.
- This explains SO much. Every really overly dramatic and completely over the top Yelp review you have ever read was probably written by some hormonal pregnant woman (or hormonal cancer patient in my case) trapped in her bed being told by a “fun guide” to do so. This is a terrible idea. Do not encourage bored people to review the flautas they had at Chuy’s three weeks ago because chances are that they aren’t going to remember them as delicious when they’re pissed off and stuck on a couch, they’re going to remember that the waiter took too long to refill their creamy jalapeño dip. So I ask for all business owners- do not write a series of Yelp reviews because you are bored.
So, friends. I have read, cooked, cleaned, folded, played, researched, watched. I even made bath salts (not the kind that get you high and make you eat peoples faces), home made face masks, and several baked goods. The problem with that is that I then just have a ton of baked goods that Nick and I don’t need to be eating. Can anyone say “brown butter blondie with a salted caramel buttercream frosting”? My thighs can, because I ate like 5 last week.
All I am saying is that when you have cancer and you can’t work, you’re worried about finances, and you’re bored- Breaking Bad isn’t as insane as you thought it was when you watched it. I’m not making meth anytime soon but instead of being like “Oh my gosh what is he doing?!” you’re more like “Walt, I feel you man”.
Lastly, I’m doing research for a blog post to talk about breast cancer awareness month and where your money actually goes when you buy something with a pink ribbon on it. This research has led to some great stuff but nothing greater than these absolutely cringe worthy photos I found online last night and had to share:
Mammies? What the hell are mammies? I don’t want to google it because when you’re googling stuff for breast cancer, one wrong slip of the finger and you are NOT googling breast cancer anymore, if you catch my drift.
P.S. I forgot to mention that I have spoken to my doctor about my pain and they have ruled out any serious complications. I have narcotics to treat the pain but I try not to take them when I don’t absolutely have to because they have side effects of their own.