Genes, Boobies and Other Accessories

Archive for September, 2012

PMPS – WTH?!

It’s amazing how quickly life can change. Bad to good. Good to bad. Just when you think things can’t change (and change quickly), they do. Over the last 4 or so weeks, I’ve lived, what I have at times called, a nightmare. To be honest, it’s been the most challenging time of my life. I think I’ve said that a few times since I started that blog. Seems like I’ve struggled a lot more than expected and each time is tougher than the last. I’ve had times where I thought there was no way I could handle any more pain than I was experiencing…and then it’d get worse. I wish I was being overly dramatic about it. I wish I was exaggerating and taking some literary license in describing the experience, but I’m not.

Over the last few weeks I’ve had days where I don’t know how I got myself dressed. Every move that I took hurt so bad it took my breath away. Showering was hard. Driving was horrific. You don’t realize how much you use your arms and pec muscles until you’re unable to move them. There were even days when I was completely unable to use my left arm and hand. I cried almost daily. I can’t count the amount of times I called my parents crying, frustrated and at the brink of losing my mind.

Just to catch you up on what’s transpired, that damn pain clinic took 4 weeks to call me to schedule an appointment. My appointment is next Monday. I can’t believe it took this long. During my wait, I continued to try everything just to get comfortable and try to exist. Last week, I finally started getting some relief! My massage therapist has basically saved my life. I have full range of motion in my left arm. My back no longer hurts as bad as it did. My pec muscle moves. It’s a miracle. Literally. I owe her my first born (well, if that was possible I’d be a billionaire, but you get the point). My family doctor started me on Lyrica and Cymbalta for the neuropathy. It’s starting to kick in and the nerve pain has gotten a billion times better. So much better that I scheduled a fill for next Monday!!! I’m going to get back on track! Two fills and then surgery! I can’t even begin to describe how much better I feel. And OMG I can lay flat on my back now! I haven’t done that since before surgery.

Because I’ve spent an unusual amount of time in bed surfing the internet, I have learned that because of the post op hematoma that I had, I was more prone to a condition that’s called Post Mastectomy Pain Syndrome (PMPS). For those of you thinking about surgery or going through it now, please please please learn from this. If you have a hematoma after surgery, keep an eye on your pain early on in the process. Begin seeing a massage therapist regularly (even if you’re not in pain) EARLY in your recovery. Let them help you before it begins to happen. If you begin to notice that your pec muscle is not relaxing. You have shooting pain down your arm and through your back. Don’t wait. Get to a trained massage therapist quickly and speak up to your doctor. Recognize the signs so that you don’t get to the point that I was at. I wish I had known that this could happen.  

So now that I’m getting my life back and no longer living in my bed with ice on my chest and heat on my back….I am working on a blog post that I’ve been slowly writing for a few weeks. It’s about one of the most important topics regarding breast reconstruction….bras. Bras. Friend or foe? I’m compiling a list of bras that I’ve worn over the last few months to showcase not only the ones that were comfortable and functional, but also the ones that I battled with – all in the name of fashion. I hope to post it this week. You’ll see it soon!

Thank you to EVERYONE that’s reached out to me for encouragement over the last few weeks. You’ve had the right words for me at all the right times. You’ve kept me encouraged and comforted. I am still battling this, but so thankful to get a break from the bitch that is expander pain. And I will update you after my fill next week and after my visit to the pain clinic.

700 (cc) club here I come!

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Tying a knot and hanging on

The last few weeks have been weird and frustrating and painful. I keep thinking that there’s a bigger lesson in this for me but there are times when I just want to have a bad attitude and not look for any lesson or silver-lining. Unfortunately for me, a bad attitude never lasts long and ends up being more comical than anything. I just can’t stay fussy. I try. In fact, in the last two weeks no one would blame me if I was irritable. For whatever reason, I try to be fussy and it just doesn’t stick. So the alternative has been to laugh and cry. And I’ve done a lot of both.

After the PT appointment where I had scar tissue rip and I saw my life flash before my eyes, I have stayed in horrible pain. I made it through that first weekend by keeping ice on my chest, taking meds and taking it easy. I spent that weekend in Toronto and still got to do everything I wanted to do. It just took me longer to get places and I cabbed-it more than I normally would. By the end of the weekend I was in bad shape and decided to go see my doctor ASAP.

I saw my plastics guy first. He said that my pain was nerve pain and it was out of his scope of skills. He’s referred me to the pain clinic. I just happened to have an appointment with my breast surgeon that same day, and he sent me to an acupuncturist. He also recommended lidoderm patches. In the last two weeks I’ve been to my plastics doctor, breast surgeon, an acupuncturist (2 appointments so far), a naturopath/kinesiologist/chiropractor/witch-doctor-type of guy, physical therapy (still), and my family doctor. The pain clinic is just now reviewing my file and I hope to get in with them next week. I’ve used natural NSAID creams, ice, heat, pain meds, muscle relaxers, Tylenol, blue goo, tens units and lidoderm patches. I’ve cussed a lot. I’ve tried controlled breathing techniques. I’ve prayed. I’ve read about hypnotherapy and the power the mind has to redirect blood flow in areas of our body….yes, I’m that desperate. And I’m still miserable. I’ve been on the phone constantly with my parents. Usually crying and frustrated because every doctor or practitioner says, “I don’t really know how to treat you. I think we might need to …” And if I get any relief at all – its temporary.

I’m two fills away from having surgery. TWO FILLS. I can’t get a fill until we understand what’s going on with the pain in my left expander and get my back/shoulder to stop hurting. Yesterday my family doctor changed my muscle relaxer (to one that won’t make me so sleepy) and started me on steroids. I tried to resist more meds, but I’m desperate. If we can just get me stable so that I can have the fills and get into surgery then everything will be better and this will all be over. Right now, surgery would fix a lot of this.  My doc says that my expanders are actually expanding out and in. Which means my left expander is sitting on my rib cage, with nothing protecting the nerves around my ribs. Hence, the nerve pain. If I had an implant there, it wouldn’t be putting so much pressure on those nerves.

I’m really tired of this and I’m really upset that all my posts lately have been around how uncomfortable I am. In fact, I hate that part most of all. I don’t like feeling like I’m complaining or throwing a pity party. I really try not to do that, but I don’t want to write something and pretend like everything is unicorns and rainbows when it’s not. I’m obviously an extreme case of someone that’s not handling the end of expansion very well but if you saw how tight my expanders are right now…you wouldn’t be surprised and you’d understand that I’m in the minority. Most of the practitioners that I’ve seen in the last few weeks all say, “I’ve never seen anyone this tight. This is going to be a learning opportunity for me.” Thanks. Geez. This is one time that I don’t want to be the guinea pig. I just want someone to say, “Let’s do this. It will fix you and let’s just get you comfortable so you can get those fills done.” At the same time…I’m still not sure where two more fills are going to go, but the bottom part of my expander is where I need it to be.

Thankfully, the last two days have been more manageable. In fact, I found a massage therapist that has treated mastectomy patients and I’m going to see her today. Maybe she can help me with the knots in my back and shoulder. I’d really like to start this weekend out with little-to-no pain. My father keeps telling me just to “hang on,” “stay focused,” “don’t let the pain get to you, Mandy. You’ve gotta power through,” or “hang on to your lifeline and when it gets tough, just tie a knot and hold on tighter.” I’m doing that…but it’s been difficult. I’m thankful to have a little bit of a break right now from it all as I sit at my desk with ice tucked into my shirt (shhhhhh I’m hiding out in my cube so no one sees that I have ice packs on my shoulder and left expander). I’m sure it’d be difficult to explain if someone walked in right now and asked me what I’m covering up with my scarf. I’m kind of comically hostile though so I might have fun explaining to someone, “Yes, I am indeed, icing my boob and if it makes you uncomfortable then email or call me. I have documents to finish and a video storyboard to review. You can just suck on it ‘cuz I’m tying a knot, hanging on and my rope is long enough to wrap around a few more necks.” Of course, all said in my best southern accent with my biggest/brightest smile.

 

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