sunday synopsis

  1. My new compression sleeve arrived. It is so much nicer than the other one.  It’s more comfortable, and by far cuter. I think I will order another one. image
  2. I stumbled upon this entry earlier, and it made me all teary. 
  3. Starting tomorrow, I am committing to getting into better shape. I’m hoping to squeeze in a run during my lunch break.  It’s supposed to be 72 degrees and sunny. The Forest Park running trail is calling my name.
  4. I read an amazing book yesterday called Speak, about a freshman girl’s struggle after being raped.  I highly recommend it. I cried, of course. (#17!)
  5. I scheduled my fat grafting surgery for 4/16. That makes me feel a little less guilty about all the crap I’ve eaten this weekend. My doctor needs the fat! I’m actually doing her a favor. 🙂
  6. My nose piercing isn’t healing very well and I am bummed. I’m hoping that tea tree oil, emu oil, and sea salt soaks will be effective. Scar tissue is building up, and I’m worried I’m going to have to remove it.
  7. My Sunday night anxiety has surfaced. I took some Xanax and now I shall read until I fall asleep.  Next up: The Martian by Andy Weir.

friday five

  1. I saw my rheumatologist the other day, and he wants me to start on the injectable Methotrexate to see if that works better than the pills.  If not, then I’ll go back on Enbrel at my follow up appointment in six weeks. 
  2. My lymphedema has been acting up, so I ordered a replacement compression sleeve today.  It’s super cute.  It has stars on it.  Here.
  3. I’m taking my bestie to go see Tegan & Sara (for her birthday) on 5/6 in Columbia. I’m so excited to see them again.  Plus, I love the venue.  I went to a ton of shows at The Blue Note when I was in college. 
  4. I’m seeing the other bestie tonight to go swim suit and lingerie shopping. I can’t believe she’s finally getting married in a few weeks.  I’m looking forward to a girls night with her. I haven’t seen her in a while.
  5. I’m almost finished with my 13th book of the year.  I’m currently reading The Waiting by Joe Hart.   

lymphedema blues

On Friday morning, I went to get fitted for a compression sleeve, because my left arm has been bothering me the past couple of months during runs.  The further I run, the stranger my left arm feels.  After a couple of miles, it feels heavy and tingly, with occasional shooting pains.  That feeling lasts for a few hours post-run.  I knew this was a warning sign for stage 1 lymphedema, because I went to a lymphedema seminar a few months ago, due to my increased risk.

For those that don’t know, lymphedema is caused by a blockage in your lymphatic system.  The system becomes unable to properly channel lymph fluid, which results in swelling of the limb. In my case, it affects my left arm, because I had 13 lymph nodes removed from my left axilla thanks to breast cancer. 

My surgeon performed a sentinel node biopsy during my bilateral mastectomy, and determined that all three sentinel nodes contained cancer cells.  Therefore, she recommended an axillary node dissection in which she would remove additional lymph nodes to look for cancer.  This would let them know if the cancer had potentially spread to other areas.  I was hesitant to let her do it because of the risk of lymphedema.   Some studies suggest that the axillary node dissection, while helpful for staging purposes, does not have any positive effect on survival.  Ultimately, I decided to do it, because i knew I would beat myself up if I didn’t.  It seems my fears have become a reality, and I have a (so far) very mild (running induced) case of lymphedema. 

I think the most frustrating part is how the doctors react.  None of mine seem to take lymphedema very seriously.  When discussing the possibility of it, all of them blew it off.  It’s very much an attitude of, “Who cares about that? Be glad to be alive. Suck it up, sweetheart." 

I purchased the compression sleeve, which is ugly and beige, and cost around $74.00.  I wore it yesterday for the first time, during a 7 mile run/walk.  It’s somewhat uncomfortable, since it has to be tight in order to do it’s job.  However, it worked well, and confirmed my fears that I do have lymphedema.  I know it’s not the worst thing in the world, but it’s just another gift from cancer, which seems to be the gift that keeps on giving. 

Now that I know I really do need to wear a compression sleeve while running, I’m going to go online and purchase some cuter sleeves.  I run a lot nowadays, and so I need a few.  If you find yourself needing a compression sleeve, I recommend you check out LympheDIVAs, which has a super cute selection.

  • I have tickets to go see The Neighbourhood in June. I am so excited. 
  • Speaking of music, the new Yeah Yeah Yeahs album is really good. I like it a lot.  If they end up coming to St. Louis this year, then I will end up seeing all of my favorite bands in 2013 (the nbhd, tegan & sara, dave matthews band, and YYY).  That would be very exciting. 
  • My new bed and mattress are here, and I’m so happy.  I put it together myself, and fucked it up, but didn’t realize it until it started falling apart this morning while Dave and I were in it.  Oops.  Luckily, Dave saw the problem right away and was able to fix it.   I guess I should let him handle such things in the future.  He offered to put it together for me, and I was like ‘oh i’ve got this.’ Ha.  The teasing may never end.   Now that it’s assembled properly, I love it, and am very happy with my purchase. 
  • It totally figures that now that chemo is finally over my body is like ‘oh hey, let’s do this arthritis thing again. It’s been a while.’ My right knee is swollen and it hurts a lot. I need to ask my rads onc when I can start Enbrel again.
  • I’m signed up to go to a lymphedema seminar on May 10th. It’s all about prevention, early detection, and massage techniques. I’m looking forward to it, because it makes me feel like I have some control over whether I get it even though I don’t.
  • I think I had other stuff to say, but chemo brain strikes again. I wonder when the chemo induced brain fog will lift. Oh well. I’m going to get into my comfy new bed and read. 

I had a dream last night that I had recovered enough to resume running.  In the dream, I was happily running along, and then I looked down and my left arm was huge and swollen.  I had gotten lymphedema during the run.  I woke up with a gasp (because I’m always dramatic, even while sleeping), and was quite relieved that it was only a dream.

Cancer is now taking over my dreams.  This is bullshit.

As happy as I am that all of the nodes she removed were negative, I’m more than a little annoyed that I had an unnecessary surgery.  My gut told me not to do it, and I questioned my surgeon about it, but she told me that in my situation she recommended it 100%.  So I did it. For nothing.  On the other hand, if I hadn’t done it, I would be sitting here right now wondering if the cancer was slowly spreading around while I wait for chemo to kill it off.  So…it’s a no win situation. 

Fuck it.  I’m just going to be happy about it.  I am going to beat this shit. Some people aren’t that lucky.