In my last post, I had just come home from the hospital with an accordion drain. I was a permanent fixture on the same chair with my leg propped up on a hassock and a pillow. I still had no appetite, very few drinks were palatable (especially water), and things were still unsettled in my abdominal area. I got back on the visiting nurses’ schedule and, besides taking my vitals, all they needed to check was my drain site and my foot. I was still losing skin from my leg and foot, but the foot had some major peeling going on, even at the pressure sore, the tips of each of the toes, and the sole. Vasolex was recommended, and my oncologist gave me a prescription – this ointment seemed to do the trick with helping to peel the dead skin away and also provided some pain relief.
The night after Christmas I moved from the chair to finally sleeping in my bed again, propped up on a mountain of pillows. I had to stay on my back due to the drain, and I needed my head elevated to keep my stomach somewhat settled.
I had the drain in until December 28th, and its removal made the biggest difference in my mobility (Note: having an accordion drain removed is a piece of cake – no pain at all!). I felt like I could be more mobile, and started trying to do a little more each day. I was finally able to take a shower. I was finally able to put on a pair of blue jeans which also made me happy, especially since they had more room in them than before the surgery. I was able to stand a little taller.
I made an appointment with a new primary care physician, just to have someone take a fresh look at ALL of me, instead of just my right leg. To combat my loss of appetite, she prescribed a 30-day trial of an anti-acid reflux medicine, omeprazole, in case I was having silent episodes. I’m near the end of the 30 days and, whether it’s the medicine working or simply more healing has occurred, my appetite has slowly come back. I’ve especially noticed it the last week and a half as I’m craving Indian food, soft pretzels, and chocolate (strange combo, I know!). Luckily, I’ve kept off the 20 pounds I lost. It was one of the worst ways to lose it, and I’m going to make it a positive by keeping it all off.
I went back to the surgical oncologist at U Penn on January 7th for a checkup. Nothing new from that visit. He’d like to see me back in three months.
Work started back up January 2nd, and I worked from home till January 8th. It has taken a while to get back into the swing of things and I feel my motivation building every day. I don’t get quite as tired as I did the first couple of weeks. I can honestly say that I’m happy to be back in the office.
This week I started the leukine therapy of self-administered shots (two weeks on, two weeks off for a year). The first night, Wednesday, I had severe chills and a fever that lasted about five hours. Thursday night I gave myself the shot at 7:15pm, took two Tylenol at 8:15pm, and was in bed with a heating pad at 8:30pm. That went much better. Last night I did the injection right before bed, took two Tylenol, and snuggled up with the heating pad. Either I slept through the side effects, or there weren’t any. One good suggestion I read on a bulletin board is to use an ice cube to ice the area just before injecting. Since the hardest part is the needle stick, I’m going to try the ice cube tonight. I’ll have this all figured out in another day or two.
Starting next Friday I’ll work with an occupational therapist who is a lymphedema expert. I have three visits scheduled with her. I’m hoping that will begin to help relieve some of my leg swelling and pain. Walking is still difficult on uneven ground and uphill, but I’m doing steps and making progress. As the day goes on and my leg swells more, my limp increases. Control the swelling, and strengthen my leg are what I hope to accomplish with therapy.
My oncologist recommends a balanced diet, but I’ve been reading a lot about how diet might help me fight cancer. I’m eating and/or drinking antioxidants every day, and have become a yellow curry (tumeric) fan, and a green tea fan. I’m working on a perfect smoothie recipe to jump start my morning that includes organic baby spinach, yogurt, blueberries, and other assorted fruits. I’ve cut back on sugar. I’m still reading and contemplating more dietary changes, and have a Mediterranean diet book to help with that. I’m also reading Anticancer, A New Way of Life. I’ll figure out something that Bill and I can maintain over time and enjoy. Boosting my immune system is the goal.
So, a little over ten weeks since the isolated limb perfusion, and I’m finally feeling more like myself. I hope I keep feeling good during the leukine treatments (so far, so good). A piece of good advice I read is to treat this as a chronic disease, not a death sentence. I’ll just keep treating it, keeping all of my doctor appointments, scanning and testing, dieting, and hoping. Can’t say enough about a great team of doctors, fabulous family and friend support, and hoping!
Isolated Limb Perfusion: My Experience 