Just an update...

Hello...  I thought I'd post a quick update.

Just the facts:

• I still see a dermatologist for a full skin exam every 4 months. I love my doctor... I highly recommend Dr. Beata Rydzik to EVERYONE anywhere near PDX. I started seeing her in July 2013 after deciding I'd like a second set of eyes on my skin and I made a permanent switch.
• I have bloodwork, chest x-rays, and a full body PET scan every 6 months. 
• I visit my surgical oncologist at OHSU every 4 months. I chose to stop seeing my medical oncologist, simply because I am not nor have I ever received medication and it's a superfluous visit (IMO).
• I have had countless biopsies since 2012 and they have all been benign.
• I had mole-mapping photos done at OHSU and it was the most embarrassing experience of my life. But, the pictures are SO helpful. Whenever I think I have a new mole or want to find out if one has changed, I have my photos to refer to.

So, basically... I'm doing great!  Not everyone is so lucky, so I feel very fortunate that all I am dealing with is tedious appointments.  This will continue until I reach 5 years NED... which is technically May 2017.

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Awhile back, I posted the wonderful video Dear 16-Year-Old Me.  If you haven't seen it yet, definitely watch it. I was so saddened to hear that one of the women, Meredith, in the video passed away from ocular melanoma (just 26 years old) this week. May she rest in peace. :(

XOXO,
B

5 months melanoma free!

Just keeping record....

It's been 5 months since my lymphadenectomy.  I haven't been to the oncologist in 4 months!  I go in for follow-ups next week.  I expect them to be quite uneventful.  They will give me a physical exam and try to schedule me for a PET scan.  I won't be having one though (currently pregnant).

Arm update:
Cording is still a non-issue, but I do feel it in my forearm at times -- usually stretching takes care of it.  Numbness continues behind shoulder, upper chest on the right side (site of incision), back of right arm about midway down, & armpit. Hurts to apply deodorant. Range of motion is not perfect and I don't trust my arm with too much body weight or excessive reaching.  I hope that will change someday.

Wide excision update:
Looking good!!!  If I have to have a 4 inch scar across my stomach... this one really isn't that bad!!  It's flat and fades more every month. The area is still semi-numb and sensitive though.

That's all I know today!

B

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