There's No Place Like Home

I came home from the hospital Thursday (12/19) around dinner time. I was feeling great at the hospital; energetic and a good range of motion in my arms.  I hadn't been using the pain pump much, maybe half as much as allowed, and did well on the oral pain meds. I'd taken a few walks, gone to the bathroom several times and was really ready to go home to my own bed.

Shockingly, I overdid it trying to move around the house on Friday. I do need to get up and move a few times a day to help prevent blood clots in my legs (I had pressure sleeves around my legs and shots of Heperin in my stomach to help with that in the hospital), but I should really stay in bed otherwise and that is hard for me. I want to be up, moving and doing, By Friday night I was really sore, and my drains had increased output, a clear message that I need to park it in bed.

The drains aren't quite as bad as I'd imagined. They are uncomfortable and gross to look at, but not as awkward or painful as I'd thought they'd be. Doug does a great job of milking them and draining them, keeping track of the output for the doctor. The running joke around here is I'm a suicide bomber. The drains look like grenades and I usually button only the few buttons above them so the shirts don't feel too tight.

 

 

Dr. Kays had to cut additional skin because that Spy Elite system showed poor blood flow to the wound site on my right side. Because of this (and my history of smoking) he did not add any saline into the extenders. My chest is now square, hard across the top. I feel a lot of constant pressure across my chest with some shooting pains, particularly when I try to sit up on my own. I also have a strange numb sensation across my entire chest and into my upper arms. If you've ever had Novacaine injections in your cheeks or lips, and touched that area while it was numb, you know the strange sensation I am talking about.

 

It was a bit of a struggle to see the incisions and lack of breasts the first time the nurse came in to change my dressing. I shed a few tears. My body shape is out of balance. At one point, I called to Doug frantically because I thought my belly was bloated, filling up with fluid. It looked so much larger than the rest of me, larger than what I remember it looking like. It's just out of balance. I'm used to having breasts to balance the size on top with the size of my hips, abdomen and butt.

 

 

I'm not sleeping well because of the pain meds. I drift off for 10-20 minutes at a time and usually wake up from a muscle spasm or from the ever-so-slight vibration from the drain suction. I've had a stretch or two of an hour's sleep, but not much more than that.

 

 

My BRCA results came in earlier this week. I'm positive for BRCA2, like my other family members. I'll be consulting with my ob/gyn sometime soon to discuss  Oophorectomy or Hysterectomy. BRCA2 positive indicates a much higher rate of breast and ovarian cancer. Ovarian cancer is much harder to find and treat. I'd rather not take any chances.

 

My Onkatype results also came back. That's the test that looks at the genomics of the cancer and the results indicate likely recurrence rates, among other things.  My results came back at a 29 (intermediate). Dr. Kotz said the highest he's seen is a 39, though the scale goes to 100. A score of 29 on the Onkatype means this cancer has a 19-20% chance of recurrence (and recurrence is not easily/likely curable). Chemotherapy is now a definite. I'll meet Dr. Kotz on Tuesday morning to discuss. From previous discussions, it sounds like chemo will start within the next 3 weeks. 

 

Dr. Weinberg took the remaining lymph nodes on my left side and a sampling from my right side. The nodes and the breast tissue have been sent to pathology. I should have a lot more information by Tuesday.  I also have an apt Monday with Dr.Kays. I'm really hoping he'll take out a drain or two by then.  I have to rest in order to heal. With that in mind, I'll leave you. My comfy bed awaits and maybe some reading for pleasure. I've spent so much time reading student papers, textbooks, journals, etc that reading simply for the pleasure of it hasn't happened in more than a year. I get bored sitting in bed. If you're local, please come visit. Distractions are welcome =)