Recovery Mode

Earlier this week I met with my surgeon to check on the skin graft’s healing. The “islands” of skin coverage are larger. He wants me to leave it exposed to the air as much as possible so it dries. I’m also supposed to gently wash it with Dove and a washcloth to debride some of the gunk. He’ll check again in a month.

After that appointment I met with the Cancer & Exercise Specialist (exercise physiologist) working with solid tumor patients on a research study, “Exercise in All ChemoTherapy (EnACT)”. The purpose is to learn if one-on-one exercise counseling will help one become more active, resulting in fewer side effects, less cancer related fatigue, improved quality of life, and improved function. She’ll provide a customized exercise prescription to follow and chart at home. The program includes cardiovascular exercise, strength training, balance training, flexibility and range of motion, and relaxation and rest. It was a no-brainer and I signed the informed consent.

Thursday was my PET/CT scan with labs, oncology, and infusion (1st Opdivo only, w/no more Yervoy) also scheduled – a long hospital day. Bill had to wheel me to nuclear medicine because I was too weak to walk that far. I had been feeling ill since my last combination Yervoy-Opdivo infusion 3 weeks prior, so I wasn’t feeling very hopeful about the scan results. Immediately after the scan I scarfed down two granola bars (I actually felt hungry!), and then we checked into the Cancer Institute.

After the scan and check-in to the Cancer Institute, we met with the exercise physiologist. She reviewed my notebook with all of the PT exercises I’ve done, and tried out a few exercises with me. She’d prepare the exercise program and deliver it to me while I was in infusion later that day. She also provided me with some equipment to use at home to do my exercises.

Scan Results: Overall, big picture, the results were fairly better than I expected because there was nothing new. There were two “old” things that need attention. First is the right outer lower breast nodule that was 8mm and mildly FDG avid 3 months ago, and is now 9mm and moderately to intensely avid. It’s still small, but moving in the wrong direction, so it was recommended to follow-up with ultrasound. Second is a new intensely avid linear lucency in the right hip that appears as a fracture. Since the rest of the right hip showed slight metabolic improvement, x-rays were recommended to rule out a fracture.

Right Breast Ultrasound Results: Because it had been 6 months since my mammogram, which was clear, I had a 3-D mammogram and ultrasound. It was confirmed that it’s a small solid tumor, but cannot distinguish between breast cancer or melanoma. I’m scheduled for a quick biopsy on the 14th to help make that determination which will decide treatment options.

Right Hip X-ray Results: “No radiographic correlate for abnormality in the anterior column of the right acetabulum seen on PET/CT.” In other words, no fracture!

Because I was still suffering the side effects of the Yervoy-Opdivo combo infusion from 3 weeks ago, my oncologist withheld my Opdivo infusion – I’ll start in 2 weeks. He prescribed a higher dose (60mg/day) course of prednisone to try and break me out of this sickness cycle and end the diarrhea. Well, my appetite improved a bit during Thursday afternoon. I woke up Friday feeling a bit better and decided to wait and see if I would have another episode of diarrhea before starting the prednisone (I really don’t do well on it!). I’m still waiting for that episode, knock on wood, so I haven’t taken any prednisone yet. I’m certainly not ravenous, but I’m trying to eat a little more and actually feel hungry at times, and I haven’t lost any more weight. I’m also finally starting to get some sleep, which the prednisone would have fully robbed from me. So I think I’ve turned a corner and am improving. The exercise feels good and I think it has helped my mood and ability to sleep. At least I’m not a constant lump on the recliner anymore!

My thyroid function had a bit of a change from low functioning to higher functioning, so my levothyroxine dosage was decreased. Yervoy had effected it 3 years ago.

This coming week we meet with the radiation doctor to review all of these results. There’s no urgency in immediate treatment, so we’re inclined to let my body continue to recover a bit longer. We’ll see what he recommends and go from there.

I finally made the move to begin a melanoma support group at the Cancer Institute. The nurses put me in touch with two other women with a similar interest and they’re both onboard to help. We meet for the first time on the 13th. This is something I’ve been wanting to do for years, and it gives me a great feeling of purpose!

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!

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.

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!

The Trifecta

The trifecta refers to my treatment over these past months: Keytruda infusions every 3 weeks, radiation treatments to my hip and right arm, and now T-vec.

I decided to write an update tonight because I just received the Med Center’s first out-of-trial T-vec injections in the tumor on my right leg. It’s a big deal! T-vec (IMLYGIC, talimogene laherparepvec) is a weakened form of the Herpes Simplex Virus Type 1 (commonly called the cold sore virus) that is injected directly into a melanoma tumor. I didn’t receive the 100% virus today, but a lower dose till they see how I react. If all goes well, I’ll receive the full dose in 3 weeks and then every 2 weeks afterwards. The first needle wasn’t too bad although the doctor had to move it around to fill the tumor with the drug. The second needle was a bit more uncomfortable in that it felt more like a flu shot and the drug started to feel like a burn. The burning feeling didn’t last more than 5 minutes, if that. It was all bearable, thank goodness. I’m supposed to wear a clear dressing for 1 week. So far, so good – no fever, no pain. When I got home, I did feel like I needed a nap but I think that was just from the stress of knowing it was coming all day and not knowing how much it would hurt. A quick cat nap and I was fine.

I’ve been reflecting on sharing my positive, upbeat attitude in this blog because maybe that isn’t attainable by everyone. Am I setting the bar too high for myself and anyone who reads this? It’s so very different for every cancer patient, and you really cannot compare one to another. Yes, I’ve gone through hell with some of my treatments over the years, but I recover. Not everyone gets to recover. Not everyone has the support system I’m so very fortunate to have. Not everyone has the research capabilities I’ve been fortunate to learn. Some have all the resources and still don’t make it. I’ve been feeling guilty for being a survivor – why me and not the others? It just pushes me more to make a difference in patient care and education. There’s a lot of work to be done and maybe that’s why I’m still here.

I continue to lament the lack of integration within the Cancer Institute. Treating only the cancer and not the entire person is a serious shortcoming everywhere within the medical system. Using only conventional research science and not considering the incorporation of plants/supplements, meditation, yoga, exercise, diet, and so much more is a huge gap in fixing the internal environment that allowed cancer to grow in the first place. I’m finally getting ahead of my cancer, but I’ve also made huge changes to my life – the Block Center’s modified vegan (and organic) diet, exercise, and retirement. There’s more I want to do, and I’ll get there step-by-step. I’m hoping to be part of starting a melanoma support group so we can share what we’re doing to feel better outside of clinic. I want everyone to have access to the same information I’ve been using to build my health.

Now, because I use this part of my blog often, here’s my calendar of treatment since my December post:

12/30 – labs, infusion (I had my internal medicine doctor add some blood tests to my labs and all were within the normal range
1/15 – brain MRI and radiation oncology appt
1/20 – labs, doctor, infusion
2/01 – radiation planning for upper right arm
2/02 – dermatologist
2/09 – electron radiation
2/10 – labs, doctor, infusion
2/15 – electron radiation
2/22 – electron radiation
2/29 – electron radiation
3/02 – labs, doctor, infusion
3/23 – PET scan, labs, doctor, infusion (stable)
3/28 – mammogram (no evidence of breast cancer)
3/31 – Retirement Day!
4/04 – internal medicine doctor appt
4/07 – dermatologist
4/14 – labs, doctor, infusion
4/18 – brain MRI and radiation oncology appt (all clear)
5/05 – labs, doctor, infusion
5/12 – T-vec injections (next injections 6/1)

Results of March 23rd PET scan: Brain clear with January lesion gone. Lungs had no FDG avidity. Abdomen is mostly clear with no FDG avidity. The tumor on my right lateral proximal tibia increased in size (from 1.2 x 0.9 cm to 1.4 x 1.0 cm) and avidity, hence the T-vec injections today. The tumor in my right arm (humeral diaphysis) decreased in avidity and became less well-defined due to the radiation treatments in February. I think my next PET scan will be in August/September.

My thoughts and prayers are with those fighting the fight and with those for whom the fight is over.

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!!

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!!!