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.
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