Slow Progress Continues

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.

PET Scan Results

I had my 3-month PET scan on October 5th with some encouraging, though mixed, results. The most important is that the “right posterior frontal periventricular white matter hypodensity” in my brain showed no FDG avid lesion or activity. What this means is that it is NOT new tumor growth in the same spot where I had two gamma knife treatments last year, and IS radiation necrosis (dead brain matter resulting from high dose radiation). In Life Over Cancer p. 328, Dr. Block wrote, “…when the radiation damages a cancer, there is collateral damage to normal tissues. The normal tissue responds as it does to any injury, igniting the inflammatory response. Which inflammatory condition results depends on what kind of tissue the radiation hits.” With me the problem is that the necrosis is causing inflammation which is causing edema which is causing my loss of taste and smell and my left-side weakness. We could just wait and see if things gradually improve, but that also runs the risk that they could get worse. Right now we think that most, if not all, of my symptoms are reversible and we want that to continue to be the case. The neurosurgeon still thinks that laser ablation (laser interstitial thermal therapy) is the best option. We did discuss Avastin, Trillin, and Hyperbaric Oxygen Therapy briefly. I asked, “If the tissue is already dead, how can you make it “deader”? It seems that the necrosis is drawing in other tissue and growing. The laser ablation would stop this process, eliminate the inflammation-causing area, and allow the edema to dissipate. So I think we’re all in agreement to move forward with this procedure, but first there is a new development I would like to have resolved over the next few weeks.

The PET also found a “new intensely FDG avid subsolid and subpleural nodule in the left upper lobe measuring 1.1 X 1.2 cm” with “an adjacent focal intensely FDG avid linear opacity in the anterior aspect of the left upper lobe.” Now one thing to remember is that not everything that shows up as FDG avid is necessarily cancer – it could also be inflammation and/or infection. My oncologist isn’t convinced that this is cancer, but he ordered a needle biopsy just to be sure. Our daughter works in that department, and asked a doctor who performs the biopsies to review my scan. He agrees that this does not present as cancer, but more as an infection and recommended a course of antibiotics (Moxifloxacin Hcl 400 mg) followed up with a CT scan in 2-3 weeks. So that’s what is happening, and I’d like to have this resolved before the laser ablation surgery. If I end up needing the needle biopsy and it is cancer, then it’s just time to schedule more radiation to which I’ve responded well in the past.

The scan also showed a new lesion in my right acetabulum (pelvis cavity where hip socket fits); uptake in my right supraspinatus muscle, right arm, forearm, hand muscles, and right anterior leg muscles; and uptake in the right gluteal minimus and medius muscles. This is all likely strain/tendinitis due to me compensating for my left-side weakness. Makes sense, right?! I’ve been going to OT and PT and exercising at home. My right side is definitely over-compensating for my left side!

Finally, the scan showed “interval decrease in size and metabolic activity of mildly FDG avid soft tissue nodule in the lateral right leg measuring 1.2 X 0.6 cm.” Previously this nodule was intensely avid and measured 1.7 X 1.1 cm. This is the area just below my knee that was radiated in July. The right arm tissue lesion also continues to decrease in size, now down from 6mm three months ago to only 3mm (1/8th of an inch). The arm was radiated in February when it measured 1.1 X 1.3 cm – now it’s only millimeters in size instead of centimeters!

With all of this inflammation, I turned to my Life Over Cancer book again, redoubling my efforts to reduce my inflammation. I checked my lab results, and my CReacProt was high both September 14th (1.53mg/dL) and October 5th (2.28mg/dL). (C-reactive protein is a marker of chronic inflammation – Dr. Block likes to see this less than 1.0mg/L.) I’m making sure that I’m getting plenty of omega-3s (canola oil, pumpkin and sesame seeds, deep cold water fish, walnuts, flaxseeds) and omega-6s (olive oil, almonds, Brazil nuts), and adding more of the Healthy Dozen food families to my daily intake (carotenoids, cruciferous veggies, allium, roots and rhizomes, leafy greens, fruits, sprouted seeds and cereal grasses, medicinal mushrooms, probiotics and prebiotics, essential fatty acids, sea veggies and algae, vitamins and minerals). The simple additions are cruciferous veggies, tomatoes, garlic, salmon, turmeric, soy, green tea, flaxseed, and fruit.

My steroids are almost at an end! I’m now taking .5mg/day for a week, and then .5mg every other day for a week. Two weeks and I’ll be steroid free! I hope the “moon face” and extra weight will soon be gone!

Yesterday I picked up my left lower leg metal brace which inserts into my shoe, extends behind my leg, and attaches via velcro just below the knee. This helps me to kick up my toes, keep my heel down, and decreases the hyper-flexing of my knee (which makes it really sore!). I’ve been wearing it at my PT appointments, but today is my first full day with it. I hope to gain some additional stability with it and increase my distance with less pain.

Big update, but things are still manageable and looking up! Cheers!