Since my last post, my hubby and I were able to take the most wonderful vacation which we both needed. We began with a stop in Raleigh and then headed to Savannah for two nights. We visited Clearwater and the Phillies training camp, and then spent almost two weeks on Captiva Island, FL. Talk about paradise! The weather, flowers, beach, bird-watching, and shelling were all spectacular! Being able to spend time with friends was so much fun! Heading home, we stopped in St. Augustine for two nights, and then back to Raleigh and finally home. I’ve had fun doing crafts with all of my beautiful seashells. Having a break from being a cancer patient/caretaker was most welcomed!
Reality didn’t waste any time though with infusion on March 9th followed by out-patient surgery on March 10th which finally removed the soft tissue tumor from just below my right knee. The surgeon showed me the tumor, and it looked like a perfectly round brown marble. Good riddance! He was able to fold the skin edges and close the C-shaped incision with stitches. However, because the site had been previously radiated, the skin was still brittle and the blood supply less than ideal. All of the skin died and I was left with a gaping hole with necrotic (dead) tissue. It seems that no one expected that outcome. The wound is a good candidate for the vacuum pump I previously used, but I refuse to go through that horrible ordeal again. Fast forward to today – I have gone through three rounds of antibiotics (two of Keflex/Cephalexin and one of Bactrim), had stitches removed, visited dermatologist who took a culture and suggested Duoderm as an alternate (easier) dressing, had follow-up with surgeon who said “no” to Duoderm because it keeps the wound too wet, and had visit with wound specialist who said hyperbaric oxygen therapy might be an option (she’s asking my surgeon and oncologist). I have to do twice daily wet-to-dry dressing changes which includes removing the dressing, washing the wound, blotting dry, applying Santyl ointment, and redressing. They all agree that this is going to take months to heal. It has been quite painful and has impacted my mobility (limping on both sides now). Finally unable to take the constant pain this week, my surgeon recommended alternating Motrin and Tylenol every three hours which has provided enough relief to make it bearable and allow me to sleep better. I’ll revisit the wound specialist next week when she’ll debride (remove) the dead tissue to promote healing. Fun times!
After our vacation I had two additional physical therapy sessions. The therapist was impressed by how much my exercising in the heated pool at Captiva Island had improved my side-stepping, high steps, and especially walking backwards. Because I was halfway through my insurance-covered visits for the year, we decided to discharge me and I joined their gym. Now I go to the gym at least 2-3 times a week and have already increased weights and reps, and have increased my speed on the treadmill from 1.2 to 1.8 mph. However, I still have a death grip on the handles! I walk 4/10 of a mile, and then do stretching and the various machines. I’ve noticed the biggest difference in the strength of my left arm and shoulder.
Yesterday I had my oncologist check my left knee because of continued and worsening pain with steps and walking. There also appears to be some fluid buildup. I’ve been hyper-flexing it for 9 months now, so it’s no surprise that it’s sore! He suspects patellar tendonitis and suggested a knee support and icing. I think I’ll also try eccentric decline squats at the gym tomorrow and ask about using the stationary bike again. I guess I have to try and do even more to strengthen my quads.
My garden is started and the spinach, carrots, and basil have already sprouted. It takes me forever to do the simplest things, but I’m persisting and will finish planting this weekend (red beets, zucchini, snap peas, lettuce). I still need to buy some tomato plants. I’m not planting any Swiss chard this year (pretty but hated it!), and I still have kale and butternut squash in the freezer.
I’ve been terrible with my diet ever since gaining so much weight on the steroids. My plan is to do a better job with meal planning, eliminate added sugar and carbs, drink more water, and start losing this weight. It will be easier once the carrot cake I baked for Easter is gone! If I can steadily lose 2 pounds a week, I’ll be happy.
My next brain MRI and neurosurgeon follow-up is next week, and then my next PET scan is May 11th. These two visits will build the summer plan to continue the fight.