Aol video about my frizzy hair!

Why can't my hot flashes thaw out my frozen shoulder?

I haven't put a health update out there for a while now, so I thought it was time. My last surgery (to remove my right tissue expander) was 6 weeks ago now (Aug. 4th), and I'm recovering nicely. My doctor wants me to "heal" for several months before he puts it back in… so my next scheduled surgery is January 19, 2011 to replace the expander. After that, I will have 8-10 weeks of saline fills, and then (maybe April?) a final surgery to replace the expanders with breast implants.

Meanwhile, I struggle with continuous left shoulder pain which started in June.

Turns out I have FROZEN SHOULDER… I was moving through the stages of it all summer without really realizing what it was. My August 4th surgery had set me back, and my shoulder seemed to get worse... likely from inactivity during recovery.

After weeks of trying alot of different things (herbs, chiropractic, acupuncture, massage, creams, supplements, ice, heat, exercises, etc.), with no improvement, I finally got approved for a CAT Scan which I had on Sept. 3rd. This showed NO tear in the rotator cuff; but a partial separation of the posterior labrum. What do you do for this? Treat it like tendonitis or bursitis, according to my Orthopedic surgeon, which only means Physical Therapy. Sigh...

All of this ultimately led to an official diagnosis from a GOOD Physical Therapist this week - definitely FS. I kept seeking help and found an awesome acupuncturist in Long Beach. I also had an excellent therapeutic massage this week in Culver City which seemed to help.

My Ortho gave me a cortisone shot on my birthday (which was 11 days ago). It didn't seem to help at first, at all. But in the last week, the pain has lessened a bit, or more specifically, I have a little more ROM (range of motion) before the pain starts. I also just started the acupuncture 2 weeks ago, so it's hard to tell exactly what's helping!

I joined a Facebook group, Frozen Shoulder Friends. Lots of experiences there. Have to take with a grain of salt, though. Apparently I fall perfectly into the demographic for FS: women, age 40-60, diabetic, and recent trauma to the body (mastectomy).

All of my medical professionals agree that I should continue dancing. Keeping the shoulder moving is the best thing for it, they say, and I do find that after a good dancing workout when I'm all sweaty and loose, I have more ROM. They said I can't really do anything to hurt it, by dancing, aside from the usual risk of actually injuring it which of course can happen to any other body part any time. I've learned which arm movements I can and can't do, and have trained myself to keep my elbow in front of my body (even during 2-step), or strictly follow my hand with my center, to avoid pain. Even when I occasionally "miss" and create pain, supposedly I can't do any damage which would delay healing; it just hurts alot.

I'm extremely motivated to work on this, as I'm committed to competing at the US Open this year (couples and a team), as well as Worlds (team). Left arm styling and leverage moves are put on hold for now. ;-)

Light at the end of the tunnel.

Friday the 13th. Is it luck? Good or bad? Or do we create our own reality? At 9 days post-surgery, I think I'm finally through the worst of it. Having dug myself out of the trenches, I realize now that a fair amount of my struggles last week were mental. Unexpressed anger, perhaps? One of the grieving phases that I must've missed. Somehow I became angry at the loss of my expander (visibly, the loss of my right breast), and felt terribly guilty for having this little pity party given the fact that I am cancer free. Now that I've had a week to get used to the idea that my initial goal of being done with reconstruction by my birthday is no longer an option, I'm sort of okay with it. I'm also beginning to get used to being a one-boob gal. As long as I can see through my tears all the incredible blessings I have in my life, I can handle anything that comes my way.

The good news - I got my drain out today! Yay! I feel so free without those rubbery chains hanging off me, getting tangled up in my insulin pump tubing. And my energy is returning, which feels great. Dr. Newman said I can dance 2 weeks after surgery, which will be this coming Wednesday. So this weekend I will rest more. And don't worry, I will NOT jump into full speed dancing starting Wednesday, I promise! Maybe I'll eve take an extra week or two, if that's what my body tells me.

A few friends have told me they are of the opinion that the infections may have happened as a result of me pushing too hard too soon after my original surgery. I respect and appreciate those opinions, and have done a tremendous amount of soul searching in this regard. Believe me, I don't want to jeopardize my health in any way. Yet I ask that you trust me. I have had training throughout my life on listening to my body's signals. I know how to bank energy bursts. Unfortunately it's not a perfect science; there's no exact recipe for how much to push it. Laying in bed all the time is unhealthy; a little exercise and light dancing to bring out those powerful healing endorphins is a good thing. OTOH, hours and hours of grueling dance practices is NOT! Knowing when and how much, is the key…the goal is to find the happy medium, and that's not easy. Perhaps I erred on the side of too much. And yet I have no regrets. I may have gotten the infections anyway, according to my doctors. There is truly no known cause. Statistically it's my diabetes. But I am not a statistic; I am me.

So what now? My PS doesn't want to put in another expander for at least 3 months... let things heal and get stronger. That puts me into mid-November which is the US Open, and then Worlds … so we agreed to wait till January, and I'll wear a prosthesis until then. I have an appointment to get fitted for one on Monday.

As I sit here on Friday night, the 13th of August, watching the live stream to the Palm Springs Summer Dance Camp where Rachel and so many of my friends are this weekend, I am at peace. Dance is my passion. It gets my juices flowing, just seeing my friends through the webcam, and watching the comps. Yet I know that dancing will be there for me when my body has had enough rest and healing time. In the meantime, I am watching. If you're at the event right now, know that I'm watching you and cheering you on!

Well, I still have ONE good breast left.

August 6, 2010 11:00pm

I lost my expander. The infection progressed rapidly. I saw Dr. Rand on Tuesday at 2pm, and he put me right in the hospital again. Then it was confirmed; I will have to have my expander removed on Wed. at 3:00 by Dr. Spenler (because MY surgeon, Dr. Newman, is away on vacation). As the hours passed, it became more red and inflamed, and started hurting. I overheard Dr. Rand say to Dr. Spenler on the phone, "exploding breast". I do believe if we'd waited much longer it would have burst.

The morning of surgery, Wed. 8/4, they aspirated some fluid (ultrasound guided) and it turned out to be fungal! The doctors said this was unusual for a breast infection; not bacterial, but fungal. This meant the antibiotics they'd been giving me were wrong. Now I'm on an oral anti-fungal, thankfully no more infusion center... at least for now.

Surgery went okay, took about an hour, under general anesthesia. My memory of events after that is pretty vague, having been on pain meds. I do remember that just before going into the OR I asked Rachel for red lipstick...

Stayed in the hospital for 2 days post surgery, and was seen by so many different doctors, I could hardly keep them straight. Trying to balance my blood sugar this whole time was so hard, even with my pump & CGM. I was told by Dr. Rand that all those antibiotics wouldn't even work if I didn't keep my blood sugars under control! So I tried very hard up until Wed... but after I realized I'd lost the battle, I thought, why bother. I felt like giving up and just wanted to eat a cupcake. Even though the real reason the antibiotics didn't work this time was because it wasn't a bacterial infection…nothing to do with my diabetes. But we had no way of knowing that.

Today, 4th and final day at the hospital, and I was crying and in pain all morning. I felt abandoned, scared and alone... all my doctors are on vacation so their partners have taken over... and they don't KNOW me at all. In many cases I wonder if the right hand knows what the left is doing. My drain site hurts just like it did last time, those last 2-3 days. I remember being told it's because of my skin, being a redhead, my skin in that area near my ribs is almost transparent, very thin and very sensitive.

At around 11:30am, the nurse came to "hang" my maxipine (antibiotic). She hooked me up to it and it hurt going in, as it did most of the time, but I tried to bite the bullet. As time went on, I noticed it was hurting a lot more… about an hour into this infusion, suddenly I noticed my arm was HARD and swollen and I couldn't bend or straighten it! I panicked and called the nurse in… the IV had infiltrated! The catheter had dislodged from my vein and the fluids had infiltrated the surrounding tissue in my arm. It was horrible! I was given a warm pack and told to elevate it. That was it.

After getting home my arm was still quite swollen and painful. I started reading things on google about the possibility of cellulitis, movement limitation and even possible amputation from IV infiltration. Then Miriam told me to stop it and go watch a movie instead. Thank God for friends like Miriam.

I had plenty to keep my mind off of this distracting complication. The emotional TRAUMA of seeing my right breast for the first time… gone. Really looking at it. I am so disfigured and terribly heartbroken by this sight of myself in the mirror. I keep trying to tell myself it's temporary. But it's so REAL. It's right here, on MY body, and so horrible looking. I'm lopsided and unbalanced. Something is missing, I feel 'wrong' somehow. What will it be like to run and spin on the dance floor now? I'm so scared for the next few months. What will Dr. Newman say about Dr. Spenler's work? He took such pride in his work on me… and now, has it been ruined? Invaded? Will he ever be able to make it right again? I know I need to trust that it will, but right now it's hard.

In many ways, this has been harder than my original mastectomy. I thought I'd won this battle; beat the odds, saved my expander in June with that first infection. I'd done so many 'right' things - alternative methods of boosting my immune system. (At least I never got a cold!) Was I blind or ignorant to think I was different? They had told me MOST of the time these expander infections end in removal. But I was determined to be different, smarter, stronger, more resilient than the rest. Not so much!

It is so incredibly disappointing that now I have to accept the fact that my reconstruction will take several more months. I may not be 'whole' by the US Open or Worlds at the end of the year. Is this the universe telling me I have to accept that, and be grateful for all of this because I'm alive and didn't need chemo?

I think that waking up from my bilateral mastectomy in April with the expanders in place, not having to see a flat chest, was reassuring and nice… but it was also kind of a deception. It made me feel almost normal. I knew they were 'fake', not real breasts, but they still made me feel mostly whole. Now I am truly faced with the brutal reality of my situation. And I feel robbed. No more hiding behind my fake boobs; I have to sit with this reality every day when I come out of the shower, for who knows how long, and it's a frightening proposition. Yet what choice do I have?

I know I will get used to it. I will do affirmations every day and look at my lost breast and learn to be thankful for my life, for medicine's advances that saved my life from a disease that 40,000 women die from each year. I will be grateful and will not take anything for granted! Yet right at this moment, I am crying. The tears just keep flowing....

Next week I will get fitted for a prosthesis and bra. No pool parties for me this summer! But that's ok, I just wanna dance...

I had felt torn about my instinctive need to take pictures the last few days. But now I'm glad I took those pictures; I have a photo journal of what happened to my right breast this last week. It's hard to look at, even for me. But it's gut-real and I must embrace it… somehow.

Next on the agenda: finding a new place on my body to wear my insulin pump.

Another bump in the road. Infection, or not? Part 2.

On Thursday I noticed a very small patch of redness on my right breast, same area as the infection I had last month. On Friday it had spread a little; but I felt fine. Called the doc, went in, and was sent directly to the ER. Stayed overnight and just got home; tired, but okay. They gave me 3 rounds of IV antibiotics in the hospital, and I will need 9 more days of it. Luckily I was able to avoid having a PICC line inserted this time, and they're just using the peripheral line in my arm which has to be switched out every 3 days. I have to go to the infusion center once daily for the next 9 days.

I'll be getting one of the same antibiotics I had last time - Cubicin - which made me extremely fatigued and weak. And the weird thing is, the doctor said it might not even BE an infection! It could just be irritation or a reaction. My white blood cell count is normal, and I have no fever. But they HAVE to treat it agressively just in case it is an infection, because I have these expanders. It appears my body does not like foreign objects! He said the only possible (probable) cause would be manipulation, meaning the saline fill I got last Friday. The blood flow to the area might be compromised. Hard to say. But at least I know I did nothing to cause it. It just happens.

Anyways I'm mostly okay and hoping that in a week it'll be cleared up and then NOTHING will prevent me from getting that implant surgery on Sept. 8th!! NOTHING!! Sigh… Best laid plans, eh?

Task for the day -- setting my mind around dealing with Cubicin side effects -- fatigue, aches & pains, itching, headaches. All part of the process. Chemo would be worse! This will all be over soon enough… bump in the road… I can do this!

When you least expect it.... life is what happens...

Back in the hospital with another breast infection. I started noticing redness yesterday, but a very small area. Today the redness got bigger, so I called the doc, went in, and was sent directly to the ER for another round of IV antibiotics. After 6 hours in the ER, I was admitted to Torrance Memorial where I am right now (room #416).

My doctor is out of town for a month. It's disconcerting to not have him around when this is happening. I hope and pray I can keep my 9/8 surgery date.

Implant Surgery Date Set! Sept. 8, 2010

Just got the news today from my plastic surgeon's office that my surgery date of 9/8 has been approved. I will finally have the tissue expanders removed and replaced with the final implants, on the day after my 54th birthday.

Doc says to expect a 2-week recovery (probably longer for full speed dancing). This might have been scheduled sooner (in Aug.) but he is out of town the whole month of August, thus the Sept. date.

I received my last saline fill on Friday of last week, which evened me up (caught the right side up with the left). I'm still very lopsided though, (right side is much higher) but hopefully that will be fixed. These expanders are very uncomfortable; they feel like large rocks on my chest that don't move.

I'm also still struggling with pain in my left shoulder & arm, which turns out to be radial nerve compression due to the muscles pressing on the nerve.

All in all, I'm doing great, and feeling very hopeful. Soon this will be behind me. My energy is still not up to par, but it's getting better every day (as long as I don't overdo it.)

Love to you all, and thanks for reading my updates!

Rhonda