Axillary Cording Update

I am thrilled to report that I can lift my arm straight above my head. For those who stumble upon this blog from a keyword search... I just wanted to share how I got through the worst of my axillary cording.

Physical therapy:  I really have no idea if it helped or not... leaning toward not. I went twice and each time was quite painful and left me with an incredible toxin headache. My physical therapist was not familiar with cording though, so she just massaged the site and tried some manual lymphatic drainage techniques. After two sessions, I was over it.

Stretching:  THIS is your ticket out of cording hell!  Just do it. Allow yourself to reach for things. I thought stretching in the shower was helpful, because the water helps loosen your muscles.  Do the exercises from your doctor... every day!

Time:  Yep, frankly... it's not going to fix itself overnight.  My surgery was 5 weeks ago yesterday... I am just now feeling like I can start to pick up the intensity in my daily life. I'm finally ready to start working out again and carry laundry baskets and put away dishes on the top shelf!

It was a very humbling experience.  And I'm ready to move on now... I know I am emotionally stronger. I'm ready to make it a physical thing, too.

Cording

I knew that lymphedema was a possible complication of my surgery... but nobody told me about THIS.

Based on my own research, I think I am experiencing axillary web syndrome or "cording" in my armpit. My range of motion is completely shot. From my armpit on down to my elbow, it feels like there is a rubber band inside. If I lift or reach even the slightest bit, it stops me & I'm afraid it's going to snap. I can see & feel the "cord" too -- it looks like a random tendon in my armpit. Stretching is very painful and my shoulder is super stiff. Of course, it's Saturday. I don't expect to hear back from my doctor until Monday.

I've read just about every article on this complication that I can get my hands on... and it sounds like I really need to see a physical therapist. They might be able to "pop" (SO NASTY) or break the cord, which is supposed to give some immediate relief. The "cord" then absorbs back into the body.

I'd gladly take back my drain to be rid of this... it's the worst physical pain/problem I've ever experienced in my life. I feel really alone, too... as I don't know a SINGLE person who has had this happen to them and it's hard for family & friends to fully grasp.  I have been getting a bit of support on the message boards at Melanoma Research Foundation, though. 

I just want to get on with my life already.

B

Post-op

I had my drain removed today!!  It was quick & relatively painless. I am so excited to have the bloody thing (no pun intended) gone. I am feeling better... out & about again. You wouldn't know anything was wrong if you looked at me and didn't know! However, the pain can be excruciating -- especially at night. The drain greatly contributed to that, but I'm mainly having trouble with the nerve pain. The back of my arm is always throbbing (worse when cold) and if I forget to take Advil, it hurts down to my fingertips. It doesn't seem out of the ordinary though -- I had very similar pains on my stomach after my wide-excision in Feb. Those pains eventually subsided, so I have hope for my arm, too!

Next steps...  My surgical oncologist scheduled me to meet with a new doctor -- a medical oncologist -- to discuss Interferon. I am already dead set against it, but I literally have to have the discussion for my chart. It's just the standard of care.

I also have appointments for a skin check and another post-op... I feel so lucky that my last results were good and I am just going back for preventative care now.

B

Great News!

Just got the call from my doctor... DAYS ahead of schedule... My pathology report is clean!  He took 11 nodes and not one of them contained tumor cells.

After 6 months of uncertainty, I am officially NED (no evidence of disease).

I'll know more about my preventative care plan after my post-op appointment next week.  I'm likely looking at skin checks every 3 months for the next few years, along w/ annual scans. Much better than the alternative!!

Happy day. :D

B

JP Drain

Just a couple of mirror-image photos to share what I'm dealing with right now. Everything is VERY tender and it's hard to get comfortable.  I am anxious to get back to work and normal life, but it's important that I don't push myself.

This photo shows my lymph incision under my arm and where the drain is connected below.  The other scars are from my previous surgery.  The bulb is pinned to my shirt and had just been emptied when I took this photo.

The drain is full in this one.  Stevie (Drain Master) empties it for me every 12 hours. It makes me gag, so I am very thankful for his help!

My post-op is on Tuesday, May 29th... so I have one more week with this thing, at the very least!

Hard things:

Getting dressed.

Can't wear a bra until drain comes out.

Washing my hair.

SLEEPING.

Can't open anything with right hand (no strength).

Can't lift my arm above chest level.

Pins & needles all the way to my elbow.

Can't feel my armpit or back of arm at all.

Could be a LONG time before I can shave again.

Could be even longer before I can actually raise my arm. 

Good things:

NO NAUSEA! Never got sick after anesthesia... amazing.

NO SWELLING or signs of lymphedema.

Pain is now manageable with ibuprofen, so I have a clear head.

Ollie is only 4 pounds, so I can still snuggle him on my left side! :)

B