The Summer of HBOT

The longer I wait to post, the harder it is because so much happens each month! The trouble is that in the cancer world, if you don’t post regularly folks start thinking the worst. Well, we’ve put off “the worst” for a bit longer :-). I’m doing well!

In my last post I mentioned the bulge in my left pectoralis muscle and the discussion over possible treatments. Well, I ended up having radiation at the end of June. The radiation consultation was on my birthday with the planning session a week later. I had five treatments each day for five days (June 27-30, July 3). My left shoulder area still feels heavy as a result which I guess will dissipate over time. In my last PET scan, the “bulge” was getting smaller.

In May I began HyperBaric Oxygen Therapy(HBOT) treatments every weekday. During my ninth dive I experienced ear pain and had to visit an ENT doc to get tubes in my ears. Otherwise it’s been quite uneventful, thank goodness. From the time I leave the house till I get back home again, it’s about four hours. Next Tuesday is my 70th and final treatment. It’s been quite the commitment and the sacrifice of my summer. The good news is that it’s working (VERY slowly) and my wound is filling in. It won’t be completely skin graft ready by next Tuesday, but it’s gotten me a lot closer. I also had outpatient surgery last Friday to complete the debridement in areas that would have been too painful to debride while I was conscious, and to drill small holes in the exposed bone in order to encourage tissue growth in that area. I had this bone drilling procedure two years ago and it was quite successful then. My pain level seems much lower since Friday, and I even decreased my pain meds, going off the long-term pain patch Sunday night. Now my dressing is just wet-to-dry twice a day, which is a bit simpler. I do NOT miss the Mesalt dressing at all!! That bugger hurt!!

I had been on Keytruda infusions every three weeks since May 29, 2015 – over two years! While I’ll say that it kept me alive, it never got me to remission. Every PET scan, every three months, had some new suspicious area, inflammatory spot, and/or metastases. It was always small, but was always something worrisome. My last PET scan was the same way with a very small spot in my right breast and inflammation back in my right hip, so my doctor finally decided to change things up. My last infusion was a combination of Yervoy (ipilimumab) and Opdivo (nivolumab), both still immunotherapies like Keytruda. Yervoy stimulates T cells to fight melanoma and Opdivo allows those T cells to recognize melanoma and attack it. Good combo, right?! It was expected that I would get diarrhea from the change in drugs, but I didn’t. I also expected a full body rash from the Yervoy, which I’ve had by itself before. I didn’t get the rash, but I do get a new itchy red welt every few days. That’s it for side effects so far – very manageable! I’ll get a total of four combo infusions, and then be on Opdivo by itself depending on the next PET scan.

The great news is that my tumor load continues to be small. With new metastases showing up in every PET scan we’re devastated for about 24 hours because we’re always hoping for no evidence of disease. Then we get back in fight mode and remind ourselves of the small tumor load. We’re at least grateful for that! Sometimes I have to look at a ruler and remind myself how small mm and cm are!

So, coming up is my next combo infusion (#2 of 4) and finishing up the tissue growth in my wound so I can get the skin graft to finally close it! Remember, the initial surgery that started this wound was March 10th. It will easily be six months from that surgery till the skin graft is scheduled in late September (I hope!!). I’m hoping that my next post will be about the skin graft!

With the skin graft done, I’ll rejoin the gym and do that regularly to lose steroid weight and get strong. They know me there, so I know I’d be in good hands. I’m hoping that with the wound finally closed, I’ll be able to ditch the brace a few times a week to help strengthen my left side. I’m anxious to be more active, especially outside. This week I’ve had two people tell me that they think I’m moving better already :-).

Think good thoughts for granular tissue growth in the wound!!! I look for it every time I do the dressing change!

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.

Skin Graft – Done!

On Friday, April 3rd, the skin graft finally happened. The surgery lasted about an hour and a half, and I was home before lunchtime. The site on my shin had a Xerform bolster dressing stitched on with extra 4X4 gauze squares, a gauze wrap and an ace bandage from my toes to my knee. The donor site on my thigh had a Xeroform dressing and a clear dressing on top of that. Directions were to keep my leg raised to prevent swelling and to eat lots of protein to encourage cell/tissue growth. I’ve been dining on lots of meat, cheese, nuts, and Greek yogurt.

The pain was higher than I expected in my shin, and the donor site burned as expected. It feels like the worst brush burn ever! It was also leaking out of the clear dressing, so I dug into my leftover surgery supplies and added an additional dressing to keep myself dry. Extra strength Tylenol helped, and I was allowed to alternate it with ibuprofen every 3 hours.

Today, April 8th, I had the bolster dressing removed. For the first time ever, I felt faint and had to lay down till it passed. I decided not to watch after all, especially since it was painful having the stitches removed, and didn’t I look till the bolster was off. The graft looks really good except for a small spot where the skin folded. My skin was bright red around the site, which explains the pain I was having. For most people, the bolster is not painful, and I think it was the irritation around the site that was causing my discomfort. My foot/ankle were not swelled at all. Just to be on the safe side, I was put on a short course of an antibiotic, Bactrim. Daily dressing changes now commence, exactly as the daily dressings I had been doing prior to the graft.

The clear dressing was removed from the donor site, and the top of the Xeroform was blotted dry with gauze (it was slimy). This is to remain, without any other dressing on top, until it dries and the new skin “pushes” it off. I can trim the Xeroform as it dries and curls around the edges. The directions were to go home and use a hair dryer on the cool setting to dry the Xeroform. The more it gets to dry, the better. I worked with my skirt hiked up my right leg all day, and it’s looking a lot better – drier already.

I go back in a week just for a quick eyeball check, and then a week later for a surgeon checkup. And then a week after that I have all-day appointments at the Block Center. I’m so excited to fill in the pieces of the puzzle surrounding nutrition, exercise, etc. I even have an appointment with Dr. Block at the end of the day. I think I’ll take my book for his autograph! Cancer won’t stand a chance after I make the changes that are recommended to me that day!!

First 2015 Update

As I reread my last post from 2014 I didn’t know if I wanted to laugh or cry. How quickly things can change! The first weekend of January I came down with both a stomach virus and a respiratory virus. The latter quickly turned into pneumonia which had me spending the majority of my time on the sofa. After two visits to the doctor and given two different antibiotics, I was still feeling horrible – no energy or motivation, no appetite, dehydrated, and still feeling as though I had been run over by two trucks. I was trying to work, but that was just making it worse. I actually had to cancel my appointment with the integrative medicine doctor because I felt too sick. Too sick to go to the doctor, sheesh.

On January 27th I had my PET/CT scan and oncology appointment. The bloodwork showed a severe adrenal gland imbalance due to the Yervoy treatments, which was causing my “hit by a truck” feeling. Well, that explained the bulk of January! After just a few doses of hydrocortisone, I was feeling more like myself – finally! All month everyone, including me, was wondering why I wasn’t able to bounce back from the viruses/pneumonia, and all it ended up taking was the right medication. I only wish that the dots could have been connected two weeks earlier. January was a bust!

The scan results were alright. The oncologist was more pleased than me – I’m like that sometimes. My lung tumor was smaller and showed less activity. Since I still have the IL2 and Yervoy treatments’ drugs working in me, we’re going to wait and watch. If the tumor doesn’t go away completely, radiation will be used to zap it out of there. There was not much change in my right shin (same size and activity), and the tumor in my right thigh was light gray (as opposed to active black). The decision was made to remove the two tumors in my leg, so an appointment was made with the surgeon. I was able to point to the tumor in my shin, but no one could feel the tumor in my thigh. Since I wasn’t onboard for a large excision with a guess on the location of the thigh tumor, everyone agreed to wait and see till the next scan. Surgery was scheduled for removal of the shin tumor, knowing that a skin graft would be needed.

While all of my leg tumors had previously been removed via local anesthesia, I wimped out this time and opted for general anesthesia. I just needed to let go of the stress and get a nice nap out of it. The tumor was removed last Friday, but the skin graft was postponed. To be sure that the surgeon got all of the melanoma, the tissue was sent to pathology and the stain test takes 48 hours. In the meantime, I have a temporary gamma graft which still leaves a big hole in my shin. I had to remove the dressing on Sunday. Taking the two wraps off was easy enough, but the gauze stack felt as though it was glued on. That removal took a lot of sweat, but I got it off – totally unprepared for the site’s appearance. Yuck! It’s painful – burning – and I have difficulty walking. The surgeon’s nurse has been very responsive to my inquiries and has helped to figure out pain management. I’m taking extra strength Tylenol alternating with ibuprofen every 3 hours which seems to help take the edge off. The next surgery is scheduled for this Friday with the hopes that the surgeon can finish up with a skin graft.

Since I’m finally out of sick leave, I’m very grateful to have a job that I can do from home temporarily. I felt so far behind from January’s absences, that being able to get caught up certainly relieves some stress. Also relieving stress is my hubby who stays on top of the laundry and dishes, and is expanding his cooking skills. He is so attentive to any need I have and has me spoiled beyond belief. We both miss seeing our grandchildren terribly, so we have the best motivation to get beyond this as quickly as possible, and as healthy as possible. Can’t lie – thoughts of retirement happen a lot more often!

January was a bust; February is looking like a bust too. Come on March! It won’t take much to outshine the first two months of 2015! As always, your prayers, good thoughts/vibes, and pixie dust are so VERY appreciated! Cancer sucks!!!

Surgery and 1st Week Post-op

Surgery day was a longer day than expected. We left the house at 4:15am to be sure we arrived at the hospital by 6:45. I’m glad we got there early, because the presurgery waiting room filled quickly. I was taken back in the 1st group, dressed in my hospital gown, and then joined by Bill. We met the anesthesiologist, and the surgeon who would be assisting my surgeon. Then my surgeon and a nurse practitioner came in to make 1cm marks up my entire leg, and measure the width at each mark – these measurements were used to determine the amount of chemo used in the procedure. Things were running late for me, but I think I was wheeled out after 9:00am. Once I arrived in the OR they got right to business, and I didn’t even realize that I was being given anesthesia until I started drifting away. That’s the last I remember till sometime close to 10:00pm that night. Previously, we had been told that the surgery would take 4-5 hours, but a family waiting room attendant told Bill that she had seen them go 5-7 hours. Since my surgery was done around 6:30pm, I guess I was one of the longer ones. Bill didn’t get to see me till 10:00pm (almost 18 hours since we left home that morning). Because they were out of beds, I stayed in recovery till the next day.

Friday, the first day after surgery, I was finally moved to a room on a vascular floor. I had a great deal of pain in my big toe, and a lack of feeling in my foot (except for pain), which had them concerned. They took an x-ray which showed evidence of rheumatoid arthritis or gout. I had to explain multiple times that I had no history of either. They had another specialist check me (a rheumatologist, I think), who said that it was not gout, and had her perplexed too. Once we got my foot down off the bed, some color, circulation, and feeling returned. My big toe and foot continued to be a source of pain, but no longer the concern it was. My foot was continually checked and showed a strong pulse, and my calf muscle was soft, another good sign. Both incisions were doing well.

Saturday was just another day of meds, vital sign checks, and moving out of the bed into a chair. Sunday included a physical therapist visit and learning how to use a walker. I didn’t really start to take steps till Monday. By then, we had played with the pain meds enough that I was beginning to have periods of relief and good rest. I still had no appetite at all, and some foods had a weird taste (don’t know if that’s a result of the chemo leaking, or side effect of the meds). I was also taking Prilosec and Zofran to help my stomach feel better (just slightly nauseous). At some point, the nurse wrote goals on my board: manage pain, and gain mobility.

On Tuesday, after proving I could empty my bladder and use the walker to move around the room, I was scheduled for discharge. I took a shower, which felt wonderful, though exhausting, and Bill helped me get dressed. We received discharge instructions, and I was wheeled out of the hospital with Bill carrying my new walker.

Arrangements had been made by the hospital to have a visiting nurse and physical therapist, and both visited on Wednesday. Vitals were checked, instructions on doing steps were given (step up with good foot; step down with bad foot), and it was suggested to drink cranberry juice to try to lower the potential for a bladder infection (due to hospital catheter). I was reminded to try to increase my activity each day, as able, to pump my foot to push circulation to my calf, and wiggle/circle my foot. Because of the holiday week, they won’t be back till Monday.

Thursday (Thanksgiving), I managed to sit in the kitchen to eat breakfast. On Friday, I made it to the 2nd floor to shower, and, in an attempt to start weaning myself off the narcotics, tried a 6-hour cycle instead of 4-hour cycle, and added extra strength Tylenol. Well, every night was miserable due to pain, even though the daytime was manageable. So, Saturday I went back to a 4-hour cycle, and my activity wasn’t more than the walker from the family room chair to the powder room. That night was good, so we pushed back the cycle to 5 hours, and that worked well for Sunday. While my entire leg continued to be swollen, the skin redness and dryness increased, so we applied Lubriderm which provided some relief. On Sunday, I started walking without the walker, and ate all three meals in the kitchen. I was finally able to read a magazine, and coffee is tasting closer to normal.

Now it’s Monday. I made it back up the steps last night for another shower (still exhausting), and then spent the night in our bedroom, though I was in the love seat rather than the bed –  easier to get in and out. The physical therapist has been here already, and I have a list of 8 exercises to build strength and try to reduce leg swelling. The nurse will be here this afternoon, and I’m anxious for her to check the groin incision since it’s been a little leaky (really not bad, though). The calf incision is healing well. I feel more alert today, and might even try reading a book. I never thought it would take me this long to post, but my mind just wasn’t capable of finding all the words and putting them together. Progress!

Preparing for the procedure

My melanoma journey began on December 5th, 2007 with a mole removal on my lower right leg. You can read about that, including my intensive interferon experience, here http://intensiveinterferon.blogspot.com/. This new site is my blog to capture my personal experience with isolated limb perfusion to treat my in transit metastases.

The date for the isolated limb perfusion (ILP) at the University of Pennsylvania (http://www.uphs.upenn.edu/surgery/Clinical/EOS/isolated_limb_perfusion.html) is quickly approaching. I’ve been making and freezing meals, stocking up on pantry items, cleaning, ordering Christmas gifts online, and trying to get caught up at work so my life feels as though as much is in order as it can be prior to the surgery on Thursday, November 15th. I won’t know the surgery’s scheduled time until I receive a phone call between 3 and 6pm on Wednesday. I won’t be able to have anything by mouth after midnight on Wednesday, and we’ll have to make the two-hour drive to the hospital Thursday morning. Hopefully, we won’t have to deal with rush hour morning traffic – that could add another hour or more to our travel time, and make it more stressful.

I know that I’ll be in the hospital for 4-5 days, and that I should expect a 6-week recuperation. I’ve made arrangements with my job to be able to work from home as needed in December. My husband has arranged to be home with me the first two weeks.

Things I don’t know include having no idea how I’ll feel my first week home. How mobile will I be? Will I want a quiet house so I can rest, or will I be looking forward to visitors? (It will be Thanksgiving week, after all.) Will I be able to concentrate enough to read and write? What will wound care be like – will I be able to do it myself, or will I need assistance? How will my leg’s skin react to the chemo (how much burning and blistering)? How severe will the lymphedema be? How difficult will it be to get a compression stocking on my leg, and how soon will I need to start that (should I bring one to the hospital)? My next appointment with my oncologist in Hershey is five weeks after the operation, so how often will we need to travel to U Penn to followup after surgery? How comfortable will I be traveling two hours home from the hospital and making round trips afterward?

Really, that’s a lot of questions. I’m not even sure what to pack for the hospital visit since I don’t know if I’ll want clothing touching my leg. I also don’t know whether I’ll feel like reading, so do I pack simple magazines or a couple of books? We were given a hospital brochure for day surgeries, but not all of the information applies since I’ll be there for several days. I’ll know all, or at least most, of the answers soon enough, but it is a bit exasperating to have so many unknowns this close to the surgery.

I appreciate all of the support I’m receiving from family and friends. I know that all I have to do is ask, and I’ll have whatever I need. That is a comfort!