Fair warning, this post is long, but I did try to sum it up and keep on point because I just need to get it out and move on as I am simply done. It's a good thing I waited until now to update everyone that has been asking where I've been, because if I had typed this last week it would be very colorful.
First let me say our Sedona celebration that we had a couple weeks ago was beautiful, memorable and beyond expectations - despite the irony. I'll be posting more about our awesome trip and many pictures soon.
I should have known something was up when 3 different dragonflies hung around us at lunch while in Sedona. More about them, with pictures, in another post.
We'll start with the irony part. If you haven't read the post below of why we went to Sedona, in short it was to celebrate my 1 year of being cancer-free. On we go... I must mention here that Sedona's elevation is 4500 feet, but further up it is around 4800 feet. While we were on a tour traveling further up the mountain, suddenly my entire right arm from shoulder to hand felt like it was being squeezed, as if my blood pressure was being taken and wouldn't stop. Needless to say it was rather painful. Since that moment, I continue to have the pressure sensation in varying degrees, along with other symptoms, every single day.
Mark and I did a little research and everything pointed to Lymphedema (no, that is not cancer), but I didn't have all the swelling we read about, only a little under my arm pit area - which is the same arm that 3 sentinel nodes were removed at time of my surgery. I certainly did NOT want it to be that! We figured that I better make an appointment to see what the heck was going on. When we got home I called my now former breast care doc/surgeon. What a joke.
After a super quickie exam I was told, and I quote: "typically it's just fat women who get lymphedema and you're skinny. Besides, I only removed 3 nodes and that is not enough to cause lymphedema." Excuse me? This, we found out, is incorrect as once the lymphatic system has been damaged you're at risk. I was basically told it is residual pain from the surgery of 1 year ago. There is so much more to what I was and wasn't told from my very first visit that I'm going to zip it here and move on to the next phase.
Because the symptoms continued, and they didn't start until Sedona, Mark thought it best for me to see a Lymphedema specialist. He found CORAL (Center for Oncological Rehabilitation and Lymphedema) and so I called. After going through the initial phone questions with the therapist, I was told I needed to make an evaluation appointment asap as it sounded like lymphedema that was triggered due to high elevation and without wearing a compression sleeve. Nope, didn't know I needed to do that, among other risk factors that we've recently discovered on own. I also needed a referral slip from my doc before I could be seen. Short version here... the doc's office was NOT going to give me the referral and I honestly had to fight to get it, which they made stipulations on it. This was beyond frustrating.
Jump to the appointment day at CORAL, which was a 2 hour appointment that included a several tests. End result, 3 diagnosis: I have early stage Lymphedema, along with Axillary Web Syndrome (Cording) and decreased Range of Motion. While I didn't want it to be Lymphedema at all, I'm thankful that at least it is early stage. The therapist said while there is no cure, early diagnosis and treatment is essential to prevent complications - plus that it could take years for the next stage to develop, but that sometimes things just happen. Yeah, I know that one.
What does this involve? Therapy 3x per week for 3-4 weeks (ka-ching) wearing a compression sleeve as directed and following the lengthy list of precautions and preventions (Lymphedema People has this list) - life long management - and I have to adjust my workload, etc. I have a lot to learn about this crap.
You know, it's not the diagnoses that upset me, it's the whole of it, which some I didn't even explain here and I'm not going to. I'm beyond tired of "one more thing" being added onto my long list of crud and spending money on medical. This completely drained me both mentally and physically. This is why I've been absent from the social sites. I had to step back into solitude and find my peace as I was being consumed by way too much negative. I'm still trying to work it all out, but for now... stick a fork in me, I'm done. I'm movin' on - in a positive way that is.
Next up, our awesome Sedona trip. Irony or not, it was perfect.
Peace,
Rocki
I didn't go into what Lymphedema is, but you can Google or here are some links:
2 comments:
I have a lot of thoughts here about your EX-doctor. B ut mostly about you. Sometimes I wonder why some people seem to have more than their share of physical pain. (I wonder this about Terry all the time.)
That said, this was yet another informative post. I have an acquaintance that wore a sleeve after he had breast cancer. I didn't want to ask what it was for.
Rocki, you are one of the most sincere and positive people I know, even if only in cyber world. I know that your will rest and re-energize and come back stronger than ever.
And Mark, you are a gem.
xx, Carol
Carol, we're probably on the same page with my EX-doc.
I so much appreciate you and your friendship. Even though we haven't met in person in all these years, you never know when it might happen :)
Thanks so much and Mark got a big smile out of your comment too :)
♥Rocki
Post a Comment