Bolster Removal

Yesterday was one week post skin graft and time for the bolster removal. My blood pressure reading did not reveal the nervousness I felt! Two years ago a bolster removal was so painful I felt faint, so I had them recline my head so I couldn’t watch. There was definitely white-knuckle pain as the staples were removed, but I got through it. Once the wound specialist said the graft looked really good, I asked to sit up so I could see it too. It looked great! The right edge was a bit loose, so a modified bolster dressing (no stitches or staples) was applied and is to stay in place till my appointment next week which will give it more time to heal. Directions are to keep it still and raised till then.

I juiced by myself this week (no veggies escaped the chute!) using nine carrots, three apples and a generous slice of ginger. It made two full pints which I’ve already finished. I liked this better than the first formula. With another five-pound bag of organic carrots in the house, I’ll be making more juice today. I almost crave it and definitely miss having it in the refrigerator!

Moving forward: Today I hope to complete an outline (to do list) to take what I’ve learned so far in the Chris Beat Cancer modules that I’ve just completed, and in the book Brain Maker: The Power of Gut Microbes to Heal and Protect Your Brain – for Life. There is a lot of new information in them and I need to figure out what makes sense for me right now. With another PET/CT scan coming up in November, October is a good time to get started and see if I can at least incorporate changes that reduce inflammation and maybe even help restore more function to my left-side. I have an appointment at the Anticoagulation Clinic on Monday and want to discuss increasing my servings of dark green veggies, Right now I’m only allowed three servings a week and that’s not going to be enough going forward.

I ordered and received Sir Jason Winters teas and have already added them to my daily hydration. I learned that adding lemon to your herbal tea increases absorption! I’d like to keep some cold brewed in the refrigerator so I’ll drink it during the day. I had a cup before bed last night and was up till 2:00am!!

I’m still waiting for clearance to start back at the gym and I can’t wait!

Thanks for all prayers, good thoughts and sprinkles of pixie dust to continue this healing!

Final Countdown to Skin Graft

Today my neurosurgeon reviewed the August 15th brain MRI, and everything looks great! At least one part of my body got a clean bill of health. Of course, the lesion eliminated brain matter, and that’s gone for good so my left-side weakness persists without any change. However, I can get stronger and get an occupational therapist consult to see if there’s any hope for improvement with my left hand. Goal: gym membership after skin graft is sufficiently healed – middle of October?

I also had a wound appointment today. I successfully completed 70 hyperbaric oxygen therapy treatments, and they definitely helped. The wound specialist said I’m ready for a skin graft! She’d like to give the wound another week to continue growing granular tissue, so I think I’ll be scheduled for surgery in two weeks. Two years ago the operation took about an hour and a half, and I had a bolster dressing on for 5 days. I’m so anxious to have this wound from my March 10th surgery finally closed!

I’m encouraged by the newest drug, LN-144, to hit the FDA’s fast-track. However, it looks like a tough one to tolerate with just over half of the patients experiencing serious side effects. Even though they’re still recruiting, I don’t know if I’d be eligible since my tumor burden is low. I’ll definitely be discussing this with my oncologist in two weeks. He has another drug he’s considering as a plan B, so I have to get that name and check it out.

I’ve tightened up my diet a bit and want to visit a holistic doctor to build a better plan. While I know it’s extremely difficult to get into remission when you’re at Stage IV, I also know I’m not doing enough to get myself there. I must lose this steroid weight and get my diet and supplements figured out. I need a plan I can stick to for the long haul. So far I’m down 13 pounds!

Here’s to attainable goals, continued hope, and a lot of fight!

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.

PET Scan Results

I had my 3-month PET scan on October 5th with some encouraging, though mixed, results. The most important is that the “right posterior frontal periventricular white matter hypodensity” in my brain showed no FDG avid lesion or activity. What this means is that it is NOT new tumor growth in the same spot where I had two gamma knife treatments last year, and IS radiation necrosis (dead brain matter resulting from high dose radiation). In Life Over Cancer p. 328, Dr. Block wrote, “…when the radiation damages a cancer, there is collateral damage to normal tissues. The normal tissue responds as it does to any injury, igniting the inflammatory response. Which inflammatory condition results depends on what kind of tissue the radiation hits.” With me the problem is that the necrosis is causing inflammation which is causing edema which is causing my loss of taste and smell and my left-side weakness. We could just wait and see if things gradually improve, but that also runs the risk that they could get worse. Right now we think that most, if not all, of my symptoms are reversible and we want that to continue to be the case. The neurosurgeon still thinks that laser ablation (laser interstitial thermal therapy) is the best option. We did discuss Avastin, Trillin, and Hyperbaric Oxygen Therapy briefly. I asked, “If the tissue is already dead, how can you make it “deader”? It seems that the necrosis is drawing in other tissue and growing. The laser ablation would stop this process, eliminate the inflammation-causing area, and allow the edema to dissipate. So I think we’re all in agreement to move forward with this procedure, but first there is a new development I would like to have resolved over the next few weeks.

The PET also found a “new intensely FDG avid subsolid and subpleural nodule in the left upper lobe measuring 1.1 X 1.2 cm” with “an adjacent focal intensely FDG avid linear opacity in the anterior aspect of the left upper lobe.” Now one thing to remember is that not everything that shows up as FDG avid is necessarily cancer – it could also be inflammation and/or infection. My oncologist isn’t convinced that this is cancer, but he ordered a needle biopsy just to be sure. Our daughter works in that department, and asked a doctor who performs the biopsies to review my scan. He agrees that this does not present as cancer, but more as an infection and recommended a course of antibiotics (Moxifloxacin Hcl 400 mg) followed up with a CT scan in 2-3 weeks. So that’s what is happening, and I’d like to have this resolved before the laser ablation surgery. If I end up needing the needle biopsy and it is cancer, then it’s just time to schedule more radiation to which I’ve responded well in the past.

The scan also showed a new lesion in my right acetabulum (pelvis cavity where hip socket fits); uptake in my right supraspinatus muscle, right arm, forearm, hand muscles, and right anterior leg muscles; and uptake in the right gluteal minimus and medius muscles. This is all likely strain/tendinitis due to me compensating for my left-side weakness. Makes sense, right?! I’ve been going to OT and PT and exercising at home. My right side is definitely over-compensating for my left side!

Finally, the scan showed “interval decrease in size and metabolic activity of mildly FDG avid soft tissue nodule in the lateral right leg measuring 1.2 X 0.6 cm.” Previously this nodule was intensely avid and measured 1.7 X 1.1 cm. This is the area just below my knee that was radiated in July. The right arm tissue lesion also continues to decrease in size, now down from 6mm three months ago to only 3mm (1/8th of an inch). The arm was radiated in February when it measured 1.1 X 1.3 cm – now it’s only millimeters in size instead of centimeters!

With all of this inflammation, I turned to my Life Over Cancer book again, redoubling my efforts to reduce my inflammation. I checked my lab results, and my CReacProt was high both September 14th (1.53mg/dL) and October 5th (2.28mg/dL). (C-reactive protein is a marker of chronic inflammation – Dr. Block likes to see this less than 1.0mg/L.) I’m making sure that I’m getting plenty of omega-3s (canola oil, pumpkin and sesame seeds, deep cold water fish, walnuts, flaxseeds) and omega-6s (olive oil, almonds, Brazil nuts), and adding more of the Healthy Dozen food families to my daily intake (carotenoids, cruciferous veggies, allium, roots and rhizomes, leafy greens, fruits, sprouted seeds and cereal grasses, medicinal mushrooms, probiotics and prebiotics, essential fatty acids, sea veggies and algae, vitamins and minerals). The simple additions are cruciferous veggies, tomatoes, garlic, salmon, turmeric, soy, green tea, flaxseed, and fruit.

My steroids are almost at an end! I’m now taking .5mg/day for a week, and then .5mg every other day for a week. Two weeks and I’ll be steroid free! I hope the “moon face” and extra weight will soon be gone!

Yesterday I picked up my left lower leg metal brace which inserts into my shoe, extends behind my leg, and attaches via velcro just below the knee. This helps me to kick up my toes, keep my heel down, and decreases the hyper-flexing of my knee (which makes it really sore!). I’ve been wearing it at my PT appointments, but today is my first full day with it. I hope to gain some additional stability with it and increase my distance with less pain.

Big update, but things are still manageable and looking up! Cheers!

Ending 2015 on a Positive Note

The first half of 2015 was a bit of a disaster. I had pneumonia, several surgeries and a skin graft, and a week of radiation. Ugh! I rebounded with two 5Ks, great vacations, birthday celebrations, a wedding, a commitment to my Block Center modified vegan diet, and mixed results on my PET scan (which is better than it could have been and better than many I’ve had). I made it past my 8 year anniversary, December 17th, of my original diagnosis of malignant melanoma. Eight years! That’s saying something! I’ve got some staying power!

So, the update – this is what has happened since my last post:

• 9/16 – labs, clinic, Keytruda infusion
• 9/17 – gamma knife treatment
• 9/18 – travel to NC for grandson’s birthday weekend
• 10/04 – bridal shower
• 10/07 – labs, clinic, Keytruda infusion
• 10/10 – granddaughter’s birthday party
• 10/15 – brain MRI, two dr. appts.
• 10/28 – labs, clinic, Keytruda infusion
• 11/03 – first Pilates class
• 11/10 – Pilates instructor failed to let me (only me) know that class was cancelled – end of Pilates! Really!
• 11/14 – wedding!
• 11/17 – started water aerobics instead of Pilates and love it!
• 11/18 – labs, clinic, Keytruda infusion
• 11/19 – water aerobics
• 11/24 – water aerobics
• 11/26 – I cooked Thanksgiving dinner!
• 12/01 – water aerobics
• 12/03 – grandchildren’s Christmas pageant
• 12/08 – watched grandson’s ice hockey practice
• 12/09 – PET scan, labs, clinic, Keytruda infusion, x-rays of hip
• 12/15 – water aerobics
• 12/21 – Radiation oncology appt.
• 12/22 – Radiation oncology planning session

The 12/09 PET scan showed mixed results again, but the bottom line is that the amount of disease left is small, really small. The oncologist says it would fit in the bottom of a dixie cup :-). My pelvis lymph nodes were clear, my lungs were clear, and my brain was clear. The nodule I’ve had on my lower right leg for months (right anterior pretibia) was still moderately FDG avid and slightly smaller (from 1.2 x 1.0cm to 1.2 x 0.9cm). (FDG is the radioactive tracer in a PET scan and stands for FluoroDeoxyGlucose. No uptake would mean no disease and avid uptake means there is disease.) The left femoral head (hip) lesion that showed up back in August and was mildly FDG avid and ill-defined is now intensely FDG avid and is 1.9 cm. What’s new is a nodule on my right arm (proximal right humerus) that is intensely FDG avid and measures 1.1 x 1.3 cm, a little bigger than the one on my leg. Oh well.

The attack: For the two subcutaneous nodules on my right leg and arm, we’re going to use the new FDA-approved T-VEC injection. This will be injected directly into each tumor every two weeks until they’re gone. SO MUCH BETTER than surgery! I will be one of the first patients to receive this at HMC outside of their clinical trials. Plus I’m going to have a one fraction course of radiotherapy on my hip lesion – that’s what today’s planning session was for. I’ll continue with the Keytruda infusions through all of this, so I’m VERY hopeful for this 3-pronged approach! The melanoma I have does not like the combo of Keytruda and radiation, so adding in the live virus of T-VEC should really give it a hard knock. Combined with diet and exercise, what cancer cells can possibly survive?! Not mine! This is it! These new drugs just keep getting better and better. As my surgeon said, “You just have to live long enough for the next new drug.” That’s what I’m doing and it’s working!

Yes, I have very high hopes, and maybe too high. So what – hope is what keeps me going. If the Keytruda-radiation-TVEC combo doesn’t quite do the trick, at least I’m that much closer to something that will do it. The trick is staying well enough to make it through all this crap, and the second half of 2015 has been stellar. I feel great, I’m happy, and I’m entering 2016 in the best shape I’ve been in for a long time.

With many thanks to those friends and family who have stayed the course with me! This fight occupies a lot of my time and thoughts, but your prayers, positive thoughts, and pixie dust do a lot to help me keep going. Having a loving and supportive hubby by my side helps a lot! Bill and I appreciate it all!!

Best wishes for a wonderful Christmas and for a very happy and HEALTHY new year!!

Last update for 2014

It’s been two months since I last posted. When I’m feeling well, I don’t like to post to the blog because I don’t want to think about infusions, doctor appointments, scans, etc. However, I also don’t like to post when I’m not feeling well, because I don’t like admitting that’s the case. I had a bit of both going on the last two months, so I kept putting off the next post. Enough procrastination! I want to start 2015 anew and put all of the 2014 cancer stuff behind me, so here’s the update.

I finished my 4th and final Yervoy infusion on December 2nd. At my oncology appointment that day, I learned that my thyroid was functioning a bit on the low side and got a prescription of levothyroxine to take care of that. I had only started feeling tired, so this was a quick and easy fix. My doctor had previously said that this might be a side effect I would experience, and had actually seen it as a positive thing since other patients who had the thyroid effected seemed to also have the best results from the Yervoy. So YAY! However, I started with a headache during my 3rd infusion on November 11th, and it never went away. He ordered a brain MRI right away since melanoma can be so darn tricky. Fortunately, the scan was clear but did show that my pituitary gland was enlarged and that is what was causing the constant headache. I was put back on prednisone, and had relief within hours! How wonderful to be headache free!! Of course the prednisone also helped with the rash I had been fighting since the 1st infusion. (Side note for those suffering from the rash: My dermatologist recommended “soak and smear” for treating the whole body rash. Soak in plain water for 20 minutes, get out of the tub, don’t dry off at all, and immediately smear steroid cream over your body. Put on an old pair of PJs. Repeat nightly as often as needed. I saw relief in 4 days.) The prednisone made me ravenous and full of energy, so I gained back the pounds I lost after being on prednisone the last time but also accomplished a lot every day being the energizer bunny. Four or five hours of sleep a night was about the max. Now I’m down to only 1 prednisone a day for another week, so my appetite and sleep have finally normalized. All in all, the side effects were doable and I was able to function throughout. When I say function, I mean travel, babysit the grandkids, go out to eat, take long walks, etc. We didn’t sit very much!

I’ve made some big changes to my diet, moving away from most meat and really amping up the vegetable intake and using mostly organics. It hasn’t been a difficult change at all, and I’ve been surprised at how little I’ve missed meat. I also think eating more veggies makes me feel better. I make my own green smoothie in the morning, and I’ve found that’s really a great way to start the day. I love Indian and Thai cuisine, so I often have that for lunch. I’ve tried some new recipes (mostly soups so far – mushroom barley and tomato basil), and want to start the new year trying some more new dishes. I enjoy cooking when I feel well and am not exhausted after work. I’m planning to start the new year with Whole Living’s diet recommended by Ann. It looks like the perfect way to reset after the crazy holiday eating.

Next week I have my second appointment with the only integrative medicine doctor in the Hershey Medical Center system. We’ll review the blood work he requested and see what recommendations he has for me. I also contacted the Block Center for Integrative Cancer Treatment, and am gathering up the information they have requested so I can schedule a visit there in a few months. Their book, Life Over Cancer, has been a great resource for me. My oncologist and his nurse are on board!

My next scan is scheduled for January 27th. If I’m finally in remission, I’ll be shocked. I’m actually not expecting to hear that – maybe I’m just trying to protect myself from being disappointed. It’s been two years since I’ve been in remission and it hasn’t been all doom and gloom. Except for the hospital stays for the IL2 treatments and recovery, life has been really fantastic! My plan is to treat my melanoma as a chronic disease and keep working to prevent it from spreading. It’s what I’d have to do even if my scan is clear. I need to make my body inhospitable to cancer, which means I still have more changes to make to be the healthiest I can be. That’s my New Year’s resolution! Here’s to the healthiest you can be too! Thanks for all of your support during the past year – we couldn’t have done it without you!!

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!