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.

What a difference a month can make!

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!