Slow Progress

Patience seems to be the name of the game!

I had a PET scan January 19th which showed less inflammation overall than the prior scan, and also showed that the brain edema is down to October’s level (I need to get to May’s level of no edema!). It also still showed a lesion in my right hip that has remained at 8 mm for a number of scans but had more intense avidity this time, so I’ve already had one fraction of radiation (February 10th) to treat it which was successful in treating the same thing in my left hip over a year ago. Done! The only other thing to be treated is the bothersome soft tissue tumor just below my right knee. It has decided to grow again after two T-VEC injections last May/June and radiation in July. It will be gone by mid-March after some quick out-patient surgery under local anesthesia.

I’ve had five weeks of physical therapy (PT) – 10 sessions total – and have made some progress. For example, my left-hand grip strength improved from 7 to 15. In comparison, my right hand’s grip strength is 40. That’s improvement but I still have a long way to go. It continues to be frustrating to tear open envelopes, deal with ziplock bags, read anywhere other than a table, and open cereal/cracker/pretzel bags, etc. In the big picture, minor stuff.

I have some muscles firing in my foot though foot-drop is still a major issue which affects walking. My balance is improving, but any uneven surface presents a challenge. I’m still using a cane when I leave the house to provide some extra stability, and I still need a railing on both sides of a stairwell to feel safe navigating the steps. My shoulder has a lot more movement now and I even found myself swinging my left arm while walking – that was a good day! I’ve been driving myself short distances since mid-January.

The neurosurgeon (January 26th) said that as the edema goes down, my brain must re-establish the neural connections that were temporarily lost. He ordered a brain MRI for April when I see him again. In the meantime, I’m building my strength, working my muscles, and moving the body parts that won’t seem to move on their own. I ride a stationary bike for 10 minutes at each PT visit and have increased the resistance from 0 to 5 (out of 20) and maintain a speed at or over 60 mph. I also walk on a treadmill for 15 minutes at the same visit and have increased the speed from 0.8 to 1.2 mph (but still have a death grip on the handle). Even with that, the therapists see the improvements I’ve made better than I.

I also started weekly personal healing yoga sessions January 16th which complement physical therapy perfectly. I’ve learned different deep breathing exercises, meditation, spinal flexes, and more – all from a chair. I’ve used some deep breathing and visualization at PT just before doing a difficult exercise (high marches) with success. I silently chant a mantra when I have trouble falling asleep. It’s good stuff!

So, I’m making slow progress, but that’s better than no progress at all! I’ve come to understand that when the doctors say months for recovery, they really mean months and it’s only been one and a half months since the surgery. I’ll continue to work hard at getting my left side functioning closer to normal and come out of this more fit than I’ve been in a long time. My goal of a 5K might not happen this summer, but I’m ready to sign up for next summer!

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.