Needle Biopsy Results & HBO

This week we received the needle biopsy results of my left pectoralis muscle – positive for melanoma. This was devastating for about 24 hours and then we got ourselves back into fighting mode. We met with my oncologist yesterday, and the decision was made to wait until after my next PET scan. Because this met is so deep within the muscle, it would be like having a lumpectomy if it was to be removed surgically and would involve a hospital stay. It’s possible to have radiation, and that doctor is also being consulted along with two surgeons by my oncologist. We’re waiting to see if it’s an isolated tumor or if more pop up in the next three months. This way, we’d do the surgery once and get them all. It seems like a logical decision. In the meantime, I’ve already received a call that my radiation doc wants to schedule a consult.

My oncologist also made changes to my prescriptions to help me manage the pain which hasn’t lessened. I now have an extended release drug, something to help my left knee, and am continuing with all of the short-term drugs I’ve been on. Hoping something works!

I had a different experience in the hyperbaric oxygen therapy (HBO) session today. It was my 9th “dive” and as soon as the nurse turned on the pressure I realized that I couldn’t pop my left ear. The pressure was building and I was beginning to feel pain. I tried everything to pop it with no luck. The nurse reversed the pressure and got me out of the chamber as quickly as possible. The doctor was there to check my ear and he announced it as a “T1”. He said there was redness and even a little blood. I had to be sent home with instructions to pick up some Afrin and use it at bedtime. I also have to take it along to treatment tomorrow. I had some congestion last night, but my ears felt fine this morning. Now, my left ear is still closed. If I can’t resolve this, I’ll need to get tubes in my ears. Sigh.

Over the weekend I had to switch to using Dakins (bleach solution) in the dressing because the pseudomonas was back in my wound. Tuesday morning I learned that Dakins kills granular tissue! Last night I stopped the Dakins and went back to using the Mesault (sodium chloride). I’m hoping my dressing change tonight shows that it was the right move. Two steps forward, three back!

Since I’m running out of insurance-covered physical therapy sessions, today was my last session for my left knee. It’s still giving me problems (patellar tendonitis), so I’m going to request a referral to an orthopedic doctor who might be able to recommend a different brace that works better with my knee but still helps with foot drop.

In happy news, Bill and I were able to pull off our daughter’s nursing graduation party! Of course, Bill did 99% of the preparations outside and inside and I did the planning. Our daughter-in-law and my mother were HUGE helps in the kitchen making delicious food and keeping the kitchen in tip top shape! We couldn’t have done it without the extra help!! Our daughter’s friend, Courtney, did the decorations which made it look like a party. Our youngest son brought along his amazing mac and cheese and was part-time grill master. Our oldest son helped get the grill back on the deck, made grocery runs, picked up my parents, kept an eye on the kiddos, and helped behind-the-scenes. Our son-in-law was an amazing lifeguard. I still ended up being on my feet too much, but it was worth it for a really happy, celebratory day!!

Documenting dressings, Beginning HBO

I was thinking about my nine+ years of treatment and the optimism I’ve carried all these years (most of the time). I named my first blog “The Intensive Interferon Experience” because I thought it was the only treatment I’d need to rid the cancer from my body. Granted, I was in remission for a short time after completing that treatment until I had a deep tissue massage. A tumor popped up on my leg less than two months later.

Changing oncology practices and with a new treatment prescribed for me, I started this new blog, once again believing that the Isolated Limb Perfusion would lead me to remission. It obviously didn’t, and I’m a bit wiser and a bit more grounded in reality with each new treatment.

Before I get to the dressing changes, I want to document the week. I had a wound specialist appointment on Tuesday where they photographed and measured the wound. It’s getting a little smaller. She did more debriding and confirmed that my tendon is running through the right side of the wound (she did some debriding there too!). I told her about the continued burning, and she doubled my Gabapentin (Neurontin) dose (take two 300mg capsules every 6 hours). She added a Mesault dressing (sodium chloride).

I saw my wound specialist again on Thursday. She was happy to see some granular tissue popping through and did more debriding. I need to add that before any debriding is done, lidocaine gel is applied and allowed to sit for a good period of time before she starts cutting. Because I have some reddened skin below the wound, she prescribed Cephalexin 500mg because it’s good for soft tissue infections. This could still be pseudomonas.

Also on Thursday I had my needle biopsy of the bulge on my left pectoralis muscle. Bill was allowed to stay in the room. The doctor did three cuts and I left with a bandaid covering the site. The results will come next week. I needed to be off warfarin for 5 days before the procedure and was instructed to begin the following evening.

At physical therapy Monday and Wednesday, I had dynamic tape applied to my weak left leg to help with foot drop and McConnell tape applied to my knee. I haven’t used my brace all week! On Wednesday, I walked .3 mile in 16 minutes with no brace.

I’ve been doing a lot of dressing changes lately, and I want to document them here in case I need to refer back to them later. So, here are the steps for Dressing #1, a wet-to-dry dressing: take a 4×4 gauze and completely unfold it and then fluff it into a ball – I swirl it into my left hand; place fluffed gauze into wound; place 2 4×4 gauze squares on top (I secured these with tape to prevent rubbing); place a combine dressing over that and secure with tape; place elastic stocking over all.

Dressing #2, still wet-to-dry, but with the addition of Dakins (bleach solution) to fight pseudomonas: wet a 4×4 with a few drops of Dakins; squeeze out any excess liquid; fluff and place on wound; place Adaptic dressing; place 2 4x4s; finish as usual. Since I was having SO much trouble with the gauze sticking at the same place where I have exposed nerves, the Adaptic dressing that has vaseline on it should help.

Dressing #3: Unfold Mesault (sodium chloride dressing); cut one of the squares into a circle to fit inside my wound; place Mesault dressing into wound; fluff one 4×4 and place on top; proceed as usual. I’m adding a little extra vaseline on one edge of the Adaptic to stop the little bit of sticking that’s still happening.

My skin is very red and irritated around the wound, so it was suggested to thinly apply Calmoseptine Ointment (available over-the-counter). I can’t tell if it’s helping yet.

This week I had hyperbaric oxygen therapy treatments (HBO) on Monday, Wednesday, and Friday. There was no doctor available Tuesday or Thursday so those treatments had to be cancelled. I wasn’t nervous to begin until I got there – what if I couldn’t pop my ears! The nurse calmed me down reassuring that they would stop the treatment if that happened (and send me to an ENT doc to have tubes placed in my ears!).

I needed to completely undress, including all jewelry, lotions, etc., and put on two cotton hospital gowns and foot coverings. Then I sat on a hospital gurney for the nurse to take my vital signs and the doctor to check my ears and lungs. Then I laid back and tried to get comfy enough for the next two hours. the nurse gave me a bottle of water in case I needed it to swallow and help pop my ears. She also gave me a mask so I could breathe “room air” for 10 minutes in the middle of treatment. She slipped a band around my arm and asked me to press a big silver button that told us whether I was grounded. My foot covers were slipped off, I was covered up, and asked what I wanted to watch – choices are Direct TV, a movie from their library or yours, or your music. Although I took in several CDs of music, the nurse recommended something more distracting for my first time. I decided on “My Best Friend’s Wedding.”  The gurney is raised, slid into the HBO chamber, the chamber is closed and secured. You can hear the air blowing in and the 10-minute dive begins.

I started popping my ears every other second, too worried to allow the pressure to build. Pop…pop…pop…pop…pop…I experimented with ways to pop my ears and became quite efficient. No pain!

After the dive I breathed100% oxygen for 45 minutes, then put the mask on for 10 minutes, then back to the oxygen for the last 45 minutes. It ended by bringing me back up from the dive which lasted 10 minutes and involved more popping of ears. Vital signs were taken – blood pressure goes up during treatment (I was at 177!) and lowers back down to your baseline within an hour after treatment. Then the doctor checks your ears and lungs again. That’s it! You can get dressed and leave.

Busy week to say the least! Next week I’ll have HBO M-F, a wound care visit, physical therapy, and an INR check. I should also learn the results of the needle biopsy.


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!!

Wound & MRI Update

On Wednesday I revisited the wound specialist, and I was in tears most of the time due to pain and my anticipation of more pain during her debridement of the dead tissue from the wound. She applied a numbing cream and was able to debride some, but not nearly all of the dead tissue. I told her that the color of the drainage on the gauze had changed over the last two days to a greenish color. She said that it was liked caused by a pseudomonas infection (common), and switched me from using Santyl to using a bleach solution for the next two weeks. I need to continue the twice-a-day dressing changes. In the meantime, she received approval from my oncologist and neurosurgeon to pursue hyperbaric oxygen therapy. I’ll be setting up a consult appointment tomorrow, but probably won’t begin until after my PET scan in two weeks. I just want to be sure that there’s no progression with my cancer and want to discuss it with my oncologist in person. I’m actually considering the vacuum dressing again since the current dressing changes aren’t pain-free and I was avoiding the vacuum because of pain (used in February-March 2015). I could use the vacuum with the hyperbaric oxygen therapy. My wound isn’t ready for the vacuum yet, so I have time to reconsider.

On Thursday I finally made a plea for stronger pain meds. The constant pain was wearing me down. I was prescribed Tramadol Hcl 50mg to take every six hours and can still alternate Motrim and Tylenol every 3 hours, which I’ve had to do. Unfortunately, the Tramadol isn’t effective for the entire 6 hours. I’ll be calling again to see if I can switch to every 4 hours, if needed.

The visit with the neurosurgeon went well. The edema is gone and all that you can see is a white outline of the border. The lesion is dead and will eventually become empty space. He doesn’t expect me to regain 100% of my left-side function, but can’t say how much further I’ll be able to progress. It’s usually 6 months out when they can make a better prediction based on the progress made to that point, and I’m out 4 months from surgery. The problem is that my right shin wound is really hampering my physical activities. I’m hoping that if I can reduce the pain, I’ll be able to be more active. I’m still increasing weights and reps at the gym, and the neurosurgeon said that’s a good sign that I haven’t plateaued yet. I’m trying to alternate days with my left leg brace on and off to strengthen different muscles in my knee and ankle. The other good news from the MRI is that there were no new mets. Having the edema gone and my brain cancer-free is certainly wonderful and I’m very grateful! Now if I could only regain my mobility!!

With the left knee pain I’ve been having, I finally got a “jumper’s knee strap” which is supposed to help with patellar tracking and relieve pain. So far it seems to be helping.

Next up is a hyperbaric oxygen therapy consult, and then another wound specialist visit and a PET scan. I only went to the gym once last week and need to try to get back to three times this week. It’s really hard to motivate myself when everything is hurting, but I don’t want to plateau too soon. Gotta keep moving!!

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.

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.