Brain Surgery – Done!

Never a dull moment here! The brain edema (swelling) continued around a lesion left from two rounds of gamma knife surgery back in June and September of 2015. I began noticing the side effects in my left-hand fingers beginning July 4th, 2016, and it continued until it had weakened my entire left side from shoulder to toes. Physical therapy and occupational therapy worked at keeping/gaining strength, learning adaptations, and, generally, keeping me from falling. A partial brace helped with foot-drop and ankle rolls but didn’t do enough to help my hyperextending knee. We had several consultations with my neurosurgeon to discuss options but, with the discovery of something new in my lungs on the October PET scan, I wanted to resolve that before moving forward. One problem at a time!

The suspicious lung lesion responded to a course of antibiotics (Yay!), but was replaced by bilateral PEs (pulmonary embolisms = blood clots = BOO!) in the November 6th CT scan. I had to start twice daily injections of Lovenox for a few weeks before they started me on Coumadin/Wayfarin/Jantoven. So the lungs were treated and we were ready for another neurosurgery consult.

I had another brain MRI on December 9th, 2016, which showed the lesion as slightly larger at 2 x 1.9cm with increased surrounding edema. It wasn’t going to go away by itself, and the steroids had very little effect on it (except I lost my senses of taste and smell, gained 30 lbs., and never slept). Now was the time! I felt great, had no new tumors, and was horribly frustrated by my continued left-side weakness. We met with the neurosurgeon on Thursday, December 15th, fairly certain about the course of action to take. If we were ready, he was really ready! I was scheduled for the next afternoon to have 3 fiducial markers (screws) placed in my skull just under the scalp in preparation for the surgery. With the screws in place, I had a CT scan which the doctor used along with my latest MRI to create the treatment plan. My 3 shaved spots were stitched and I was on my way home – easier and faster than gamma knife!

The surgery – laser interstitial thermal therapy – took place around 3:00pm Wednesday, December 21st. Afterwards, the surgeon showed Bill and Kelly cell phone pictures of the lesion being heated in the MRI machine and destroyed. Bill was able to see me in recovery after 7:00pm, I think. The screws were already gone with only two stitches each, and I had added just one more shaved spot with two stitches for the probe. I needed to stay overnight for observation, but had no problems. I was released early the next day to home. The doctors warned that the swelling would probably get worse before it got better (and there are NO promises on how much left-side function I might be able to regain). It did get worse – my left-hand preferred to be in a tight fist and my toes wanted to curl under. A week of steroids  seemed to keep the swelling in check. I can relax my hand now, though it’s still not much use, and I need to wear shoes for walking to protect my toes. The brace continues to help with foot-drop.

I was so very grateful to be home for Christmas – very tearful, but home! Having our family with us meant everything! We truly missed those whose travel plans couldn’t get us together, but we’ll try to make the rounds in January. My sister-in-law did the cooking, my brother-in-law helped install a longer handrail to get myself upstairs, my brother drove my parents out for a wonderful visit, my hubby lowered the bed to make it easier to get in, and neighbors made us a most delicious Christmas Eve dinner. Our children and grandchildren made the first week after surgery an extra special time full of love and laughter.

Keytruda infusions continue every three weeks. At the next one I’ll have my next PET scan and we’ll see where we are then. I’ll deliver my orders to restart PT and OT tomorrow (Tuesday), and plan to work hard to regain as much function as possible. The difference I’ve noted is that my left arm/hand/leg/foot feel heavy, which isn’t how I would have previously described them. In the meantime, I’m not allowed to drive for a few more weeks which makes me feel as though the last vestiges of my independence have been stripped. I’m normally a strong, independent person, and these last six months have tested me to the core, especially the last two weeks where I’ve become even more dependent. My husband is truly my life partner, through *everything*, and I know I haven’t been easy to keep still in one place, out of trouble. I’ve always reserved my patience for others, not for myself – I’m still learning (and I still hate to ask for help!).

So, if you see my hubby, give him a pat on the back for all he has endured/is enduring, and buy him a beer! You can take him golfing – I’ll just sit in a chair and promise to stay out of trouble (wink, wink!).

Future plans – discuss yoga with my doctors and therapy providers and find the right fit to get started.

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!