this and that, and what’s gone wrong, and on, and on, and on

  1. The dark and rainy weather matches my mood. I woke up in a major PsA flare. Everything hurts. It even hurts to type this. I have an appointment with my rheumatologist on Wednesday morning, and I’m hoping he will allow me to try the new drug that was just approved by the FDA: Otezla. It works differently from the biologics that I’m no longer allowed to take. I’m really hopeful.  If my hopes are crushed on Wednesday, I’m probably going to start bawling right in his office. I can’t even with this shit anymore. 
  2. I’m exhausted, and have been since yesterday, which I think is because I overdid it this weekend. I spent a few hours on Friday, and almost all day Saturday, spring cleaning.  I am quite proud of what I have accomplished. Everything is clean and organized. I got rid of a bunch of junk, and was even able to donate several bags of clothes and boxes of old toys. I’m paying for it now though.
  3. Friday night was lovely. Jax and I met up with Danielle for shopping and dinner. The two of them get along so well, and it’s so sweet to see them having fun together. She’s going to be an excellent mother someday.  She’s already an excellent friend. I love her and appreciate her friendship so much.  She just gets me. 
  4. On Sunday I woke up with the beginning of this horrible PsA flare. I still managed to finish up some household projects.  Then I spent the afternoon with Jax and Freya. We watched movies and played a lot of hide and seek (somehow I was always the one seeking).  It’s fun watching them play together, and I’m happy that they get along so well. It helps that they are adorable.
  5. I was kind of sad that I didn’t run the half-marathon yesterday, but under the circumstances it was the right decision for me. Dave and I are talking about running the 4th of July 10k that we did last year. This time I won’t be going through radiation, so I plan to set a new personal record. I have to figure out what my time was for that. I think it was like 1 hour, 10 minutes or something. Not too shabby for a girl recovering from chemo with a burnt boob. 
  6. I try to give myself credit where credit is due. I’m bad at that. Being down on myself all the time is fucking exhausting. I’m over it.
  7. I think Dave and I have found the perfect place for our summer vacation.  With this in mind, we have decided to get into better shape. After my surgery, I intend to join Urban Breath, which is a yoga studio in The Grove. It’s so close I could walk there (City living ftw).  Danielle and Ross go and love it so I’m sold.  Dave and I are going to start riding bikes, which I’m crazy excited about.  Of course, I still have running and personal training to throw into the mix.  With all of that, I should see some results. I think I have to wait 3 to 4 weeks after surgery before I can begin “rigorous” exercise, but I figure K and I can still do our lunch walks in the meantime. (I seriously love those walks with her. They make me so happy.)  I’m feeling good about this plan.  Now if the weather would just cooperate. *sigh*
  8. You know what? I’m in a better mood after writing this all out. I love blogging.  It could also be the fact that the Percocet just kicked in. Whatevs…no complaints. ❤

i didn’t miss you

I had to visit the Siteman Cancer Center today for a follow-up with my oncologist. I hadn’t been there since August, and I was filled with dread (plus a touch of nausea) as I walked in the doors. Labs first.  Doctor second. It felt kind of weird to have a blood draw there without having a port, though I certainly didn’t miss the horrible taste and smell associated with flushing the port.

Good news:

My blood work is perfect. There are no signs of recurrence. My doc said we won’t be doing any scans unless the blood work indicates a problem.  I was a bit concerned about this at first, but he stated that regular blood work is a much more reliable indicator of a possible recurrence. If my blood work shows abnormalities, then we scan. 

He told me I can keep my Mirena IUD, even though my gyno wants it out.  He believes it isn’t doing any harm, and may be actually doing some good.

He’s pleased that I don’t have any significant Tamoxifen side effects. He felt my new boobs, which he says look great (haha), and gave me the all clear.

All of the nurses made a huge deal about how much they love my hair and claim that I should have short hair forever and ever.  Apparently I have a “pixie face.”

Bad news:

He changed his mind about Enbrel. He doesn’t want me on it unless the circumstances are dire.  Since I am still able to function normally most of the time, he wants me to suck it up.  He says taking it will most likely increase the risk of recurrence, though he cannot say by how much. This made me unhappy, but I get it. I really do.  I’m just disappointed because I’m so tired of being in pain EVERY SINGLE FUCKING DAY.

Overall, it was a good visit. I go back in three months.  All of them want to put me in permanent menopause, but I keep saying no, and will continue to refuse it. I did appreciate that he told me he understands, that he knows I’ve had a lot taken from me this last year, and he doesn’t blame me at all.

I can deal with hot flashes. I can deal with warm weather. But dealing with both totally sucks. I turned on the air conditioning tonight. Saving money just isn’t worth it.

I’m trying to maintain a good attitude. It’s hard today. Chronic pain sucks. I’ve been living like this for 10 years and it hasn’t gotten any easier. The middle finger on my right hand is so swollen that I can hardly use that hand. Jax brushed against it earlier and I screamed. My right knee is so swollen that it’s hard to walk. The right side of my body hates me a little more than the left. Ha ha.

But ya know what? Marijuana and oxycodone…they help a bit. Psoriatic arthritis and breast cancer? I think I’m entitled.

Of course, it feels stupid to complain about the arthritis after dealing with the cancer, but it still hurts like hell so whatever. Life is weird.

But…at least I’m alive. There’s that.