Liver Function Progress

I’m getting closer! Last week my liver function number was 67, and this week it’s down to 36! Normal is between 0 and 33, so I’m almost there. This week’s number is good enough to drop my prednisone dose to 10mg, and it puts me on track for infusion next week. The only changes I’ve made are taking 2 doses of Aleve each day to manage low-level pain, and I’ve been a complete teetotaler for the past few weeks instead of having an occasional glass of red wine or dark beer. I do miss my nightly glass of red wine! Oh well, small sacrifice if it’s making a difference. I’m hoping the lower prednisone dose will let me lose my steroid “moon face,” get my tastebuds back, and decrease the sensitivity in my teeth.

I started with a new physical therapy practice last week, and my exercise regimen has doubled. The therapist is hooking me up with a hand specialist for a consult to see if they think any improvement can be made with my left hand function. She’s also given me contact information to have my left foot/calf brace re-evaluated for one that might allow for more ankle movement. All of this exercise has me feeling good!

I also had my first acupuncture appointment last week and go again today. It went really well! She used 15 needles, including 4 in my right ear for PTSD, for the trauma she said I’ve been through with cancer treatments – interesting. She put needles around both elbows and ankles, and I think there might have been one on my left shin. I was very comfortable and relaxed throughout the appointment. I had been having terrible cramping in my right foot and ankle almost nightly that would wake me up and get me out of bed to do stretches and massage. The last time that happened was the night before my first acupuncture. I haven’t had any of those episodes since! The other change I’ve noticed is that I’m dreaming a lot more. I’m anxious to discuss those changes with her today.

We hosted a Super Bowl party with friends and family. The planning and preparations were fun, keeping me busy with games, a points pool, and Philly food (cheesesteaks with Amoroso rolls and whiz, soft pretzels, and Tastykakes). Everyone seemed to have a good time, and the Eagles won!!!

The first ever Melanoma Support Group meeting is in the books! Patients and caregivers came, and our program was well-received. We’re on our way! This makes me SO happy!

This week I’m on the dreaded PET scan diet for 3 days – low carb/low sugar. I’m always sick of eggs and strawberries (only fruit allowed and limited to 10/day) after these 3 days! However, I seem to have a better attitude about it this time around because I know I needed a diet reset. My weight has been slowly creeping up since Christmas, and this will start the decline that I hope to continue. Once I lose the 8 pounds I’ve gained since Christmas (already halfway there), my goal is to lose at least 14 more.

The PET scan and brain MRI are both scheduled for this week, and our fingers are crossed for no new surprises. As long as my tumor load stays low, we’ll continue to have hope and wait for the next research breakthrough that might finally get me into remission. Cheers!!

 

PET Scan Results & New Treatment

I’ve had lots of appointments in planning for healing my surgical wound, which they’re now calling a radiation wound since the radiation I had for the tumor back in July is the reason for the tissue damage and the reason it won’t heal.

I visited my family doctor (ended up being a physician’s assistant, but he was great!) for my left knee pain since it’s no better and is really impacting my mobility. After a thorough exam, he recommended an x-ray and prescribed additional physical therapy just for the knee and Meloxicam to reduce inflammation. The xray results: Findings: “There is mild narrowing of the medial joint compartment and tricompartmental marginal osteophyte formation. No joint effusion. No fracture. No lytic lesion.” Impression: “Moderate degenerative change of the left knee” I’ve already begun the physical therapy sessions to strengthen my quads, something I’ve been trying to do for months. I’m even going without my brace every other day to try to strengthen my ankle and knee. Next step will be to see an orthopedic doctor.

I had a consult at the Center for Wound Care at the Rehab Hospital for hyperbaric oxygen therapy (HBO). Apparently my wound is a perfect candidate for HBO since this kind of wound has the most success with that treatment. I needed a CT scan of my lungs and a current echocardiogram to be approved.  My echocardiogram was clear with little change from 3 years ago. My lungs were clear in the PET/CT scan I had yesterday. My wound care specialist prescribed Ciprofloxacin Hcl 500mg for 10 days to combat the pseudomonas infection. She also prescribed Neurontin (Gabapentin 300mg), starting me on the lowest dose for the nerve pain I have in my right lower leg.

I’m scheduled to begin HBO on Monday morning. I need to arrive 30 minutes prior to my treatment to prepare. That means changing into a 100% cotton gown. I’ll also be checked by a doctor for clear lungs, temperature, and blood pressure. Then the hospital bed is rolled into the chamber for treatment to start. First the pressure is increased gradually for 10 minutes as though I’m scuba diving 45 feet down (they call it a dive). I’ll need to pop my ears. Then I’ll breath 100% oxygen for 45 minutes. I get a 10 minute break by wearing a mask to breath “regular” air for 10 minutes to avoid oxygen toxicity. Then I’m back to the 100% oxygen for a final 45 minutes. The process is completed by decreasing the pressure over 10 minutes and I’ll need to pop my ears again. I’ll be checked by the doctor once more, and that’s it. There are a lot of things to avoid prior to each treatment: no lotions, makeup, hair products, deodorant, jewelry, perfume, etc. New nail polish needs to be applied the Friday before a Monday treatment so all fumes are dispersed. It’s very specific! I can watch Direct TV (no HGTV though), listen to music or watch movies with CDs I bring along, etc. I think I’d like to listen to books on CD. If anyone has any good ones, let me know. I need to visit my local libraries to check out their selections.

The HBO requires quite a time commitment! They have recommended 40 treatments (insurance approved 30). I will go 5 days a week (Monday-Friday) for 8 weeks, hopefully. Initially I may feel more energized and the therapy may even reduce my pain. We’re hanging a lot of hope on this!!

The PET scan was good overall. The only thing that needs to be investigated is a small bulge on my left pectoralis muscle. It’s suspected that it’s a result from my arm exercises, but we’re going to be cautious and check it out. I have a needle biopsy scheduled for next Thursday under local anesthesia to learn whether it’s melanoma or not. If it is melanoma, it will get radiated and I’ll be done with that. If it’s not melanoma, then I will have No Evidence of Disease (NED) for the first time in years!!! It would almost be a miracle!!! All fingers and toes crossed!

Pain management and exercise are at the top of my to do list. Thank goodness for my wonderful hubby – I could not do this without his constant support and love! He is my rock and, with him, we can do this!! I also greatly appreciate the encouragement I receive from my blog readers! There are days when it’s your motivational messages that keeps me going! Many thanks and love!!

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.