I barely slept last night because I was so nervous about my medical appointment this morning, but it ended up going really well. I met with my rheumatologist for the first time in three years (I know! Yikes!) and she agreed to put me on a new med that is now available for my condition. So I’ll hopefully be starting that soon, assuming my labs and x-rays look okay. She also gave me a cortisone injection in my problem knee (ouch!) which should provide a few months of relief in the meantime. I’ve had good results with these previously.
The new drug sounds a little scary, but nothing is without the potential for side effects. I’m just grateful there is no cancer risk. Plus, one of the big side effects is weight loss. Um…count me in, please!
I’m icing my knee, per doctor’s orders, for what will hopefully be the last time for quite a while.
I’m so fucking relieved. I can’t even begin to describe it.
Last night was weird. I was in a ridiculous amount of pain and nothing was helping. A list of remedies I tried:
- elevated leg
- prescription pain meds (tramadol)
- prescription anti-inflammatory (celebrex)
- over the count pain & anti-inflammatory
- soaking in hot bath
- wrapping & icy hot rub
There were actual moments where I was screaming because the pain was so intense. I have a very high pain tolerance and this shit was no joke. It was scary because my condition appears to be getting worse (again), and I’m worried that my rheumatologist isn’t going to want me to start the only therapy that actually works to put me into remission (because of cancer issues). Oh and she can’t see me until fucking August, so…
Maybe I need to find a new doc? Sigh.
Anyway, I was feeling like shit so I decided to add booze and weed into the remedy mix. This actually helped. The pain was still there, but it felt far away and didn’t bother me as much. I was finally able to relax. Unfortunately, it also made me nauseous and dizzy. I ended up crawling around at one point. I hadn’t eaten much yesterday, so D came home and made me a filet and baked potato. (I’m totes spoiled). I’m so lucky to have him.
I woke up this morning feeling a lot better. The pain is still there, but it is much more manageable. Good thing too because I am in charge of getting and feeding the kids tonight, which means no drugs for me.
I’m going to try to enjoy spending this rainy/dreary day in bed. D is home writing the final exam for the class he taught this semester. I like having him around.
**notes to self
Alt therapies to ask about: cortisone injection in knee, prednisone – could do that until I get past the breast cancer five year remission mark and then go back on biologicals. Maybe Otezla instead of Enbrel? Is there a difference in the way it works? Investigate cancer risk.
Trying not to cry. Also, considering cutting off my leg.
I took a couple of Tramadol and some Benadryl because I’m in a fuck ton of pain and I don’t want to be conscious anymore. It’s 9:47 am. Fuck it.
I’m in a lot of pain today, and it sucks. I’m pretty much bedridden.
I have my favorite blanket. Pain pills. A good book. HBO Go. A cuddly cat. And an interesting view from the bedroom window.
So things could definitely be worse.
I think I may stop taking Tamoxifen. I’m at least going to be taking a break.
It has come to my attention this last week that Tamoxifen (along with Methotrexate) is making my hair fall out. It has gotten extremely thin. You can see way more scalp than I’m comfortable with. A Google search revealed that this is a very common side effect. (It would have been nice to have been warned about it.) This is the last straw for me. I’ve been putting up with the other side effects, such as depression, dental problems, skin issues, mood swings, and fatigue. I would have continued to suffer through these side effects, but the hair loss is too much. I can’t do that again. Call me vain. Call me crazy. Call me stupid. I don’t care. Cancer has taken so much from me, and I have to put a stop to it at some point. I didn’t take it last night, and I don’t plan on taking it tonight. I see my oncologist on Wednesday. I’m expecting him to throw an epic fit when I tell him. He’s going to shove the statistics down my throat, but I’ve read the studies and the benefit is not nearly as great as he wants me to believe.
I was talking to two of my friends about this and they both said the same thing: you can’t stop taking it. My response to that was: my body, my choice. I’ll be telling the same thing to my oncologist.
I stopped my Methotrexate last week. I initially blamed the hair loss solely on that drug, since it too is known for causing hair loss, and I was warned this could happen. Its job is to kill rapidly dividing cells, which includes hair, so it’s not terribly surprising that I would see some hair loss. However, I’m not going to continue to poison myself with this shit when it doesn’t even work. My joints are still fucked like 50% of the time. There was no difference in my condition during the time I was off the medication for over a month. Still…my rheumatologist is going to flip her shit when she finds out. **zero fucks**
So that is what I’ve been dealing with this week. It has been a hard week. Plus, my social media has been full of shit about the St. Louis Komen walk, which was this morning. I decided not to participate this year. I’m way over breast cancer. I don’t want to think about it anymore.