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!

Last Combo Infusion & Skin Graft Update

This past Thursday the surgeon checked my skin graft and said that there are islands of the graft that have taken. I still have to redress it daily but can drop the wet-to-dry step. He also said to let it air out as I’m able so it dries a bit. I’ll see him again in almost three weeks.

Thursday was my last Yervoy/Opdivo combo infusion (4th of 4). After this I’ll only get Opdivo every two weeks (easily tolerated and a much shorter infusion). I also got my flu shot. Although the only side effect I had experienced up till now was a slight decrease in appetite, that changed Thursday night with an entire lack of appetite and chills that kept me awake till 1:30am. Yesterday I still had no appetite and added a second dose of omeprazole to try and ease the belly bloat and constant burping (didn’t work). The chills started earlier around 5:30pm and I couldn’t get warm. We finally took my temp – 102.9F. I took two extra strength Tylenol and that helped a bit. This morning was the same story: bloating, burping, no appetite. Then my body added an episode of diarrhea – grrreat. These are all common side effects of Yervoy that I was fortunate to avoid through the previous three treatments.

To make sure I am doing all I should to control side effects, I talked to the on-call doctor. Sounds like I’m doing everything right except I should increase fluids. If I worsen or feel that I cannot manage at home, he suggested I visit the ED for lab work. However, without examining me, his best guess is either the Yervoy catching up with me, or the Opdivo (immunotherapy) ramping up to interact with the flu vaccine. Makes sense.

Tonight I took the Tylenol around 4:30 before I got the chills, and it seems to be helping. I do NOT feel horrible, just slightly under the weather. Chocolate Ensure, hot tea and a daily banana are sustaining me. I have survived much worse than this! 😁

Onward and looking to a better week ahead!

Skin Graft Success!

I had my second appointment with the wound specialist yesterday (post-graft) to remove the modified bolster. The graft has taken! What a long road this was! Cue happy tears!! Now I need to do a daily dressing change: xeroform cut to fit in the wound, damp 4×4 fluffed, dry 4×4 fluffed, ABD pad, gauze wrap, compression sleeve. I need to send her a photo on Friday and then a week later just to be sure nothing funny is happening with the site. Next up will be a visit to the surgeon in two weeks or so. The pain level will continue to drop as the graft heals. I’m allowed to increase my activity level as tolerated which will increase the blood flow to the graft region and continue the healing.

The donor site is completely dry but the dressing has not yet begun curling at the edges. As the skin below scabs, it will push the dressing off. It’s still a bit tender, so I continue to wear baggy shorts.

Yesterday I made more juice from twelve carrots, four apples, one lemon, and a generous slice of ginger which made three pints. I drank half a pint of juice, a fruit smoothie (blueberries, kale, ground flax seed, banana slices, almond milk, and Activia), and a mug of herbal tea. Last night I woke up with severe indigestion! What a night! I’m back on omeprazole and will take it easy on my healthy drinks till my body can adjust gradually. So far today (it’s noon) I’ve only had a cup of coffee and water, and I’m not hungry at all. One step at a time!

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!

Two Days Post Skin Graft

Two days post surgery: Last night I was upstairs preparing for bed when I noticed a spot of blood on the floor. After cleaning that up I needed to find the source – wound or donor site? The wound had some drainage, but no blood, so I dressed it with a clean ABD. Then as I unwound the ace bandage from my thigh I saw that this was definitely the source. The plastic sticky covering was leaking at one side. I needed Bill to check on the post-op instructions for me since they were downstairs. As the most devoted partner in all of this, he left the Penn State game to come to my aid! The instructions said in case of leakage to remove the plastic covering and replace it with Xeroform. Now how many homes have a supply of Xeroform at their disposal?! Uh, that would be us!! It sounded familiar and, after looking it up online, I had Bill check our past leftover surgical supplies to look for a foil packet and there it was! I cleaned up the site with 4x4s, applied the Xeroform, and we wound my thigh back up with the ace bandage. Done!

Pain meds: Yesterday I dropped the Motrin after the morning dose and started back on my “normal” dosage from pre-surgery. That worked out just fine yesterday. Today, whether it’s from bothering the donor site or just typical two days post-surgery happenings, the pain is a bit less tolerable. I will probably add the Motrin back in at my 3:00 dosing time – no need to be a martyr!

Juicing: The idea is to increase my servings of organic fruits and veggies without chewing all day. Today Bill and I used the Breville Juice Fountain Plus for the first time. I used a juice formula from https://www.chrisbeatcancer.com/ ( all organic): 5 carrots, 2 celery stalks, 1 small red beet and its greens, slice ginger root, 1/2 lemon (or lime), 1 apple (calls for Granny Smith but the store didn’t have any organic). It made just over a pint of juice. Two ingredients I was missing were turmeric root and a clove of garlic, but it was a good start. I tasted the beet and celery most strongly, so I think I’ll add more carrots and apples next time. Also, since I have to peel the lemon for this juicer, I might use a whole one next time. The juicer was easy to clean up, but it’s definitely a two-person operation since I can only use my right hand. I put handfuls of the fruits/veggies in the chute and Bill put the chute cover on ( after we blasted a red beet chunk into the air!!). I’ll double or triple the recipe next time (tomorrow?) so I have juice for a few more servings (days?).

Another juicing recipe I’d like to try is the Gerson Carrot Apple Juice: equal parts carrots and apples. Three large carrots equals one apple. I’ll need to find organic, or at least no-spray, Granny Smith apples since the tarter fruit is best.

I did a lot of standing for the whole juicing process, so I’m back to sitting mode with my leg raised to prevent swelling that could negatively affect the graft. Bill is outside being a lawn warrior and I wish we could be working side-by-side. I absolutely love working outside in my flower beds! Hopefully next year will have me back doing more of the things I love! Dare I hope for long walks, swimming and gardening? I’m trying my very best!

Skin Graft Done!

Yesterday we had to be at the outpatient surgery center by 7am. We had to wait over two hours till they wheeled me back to the OR. The surgery took about an hour, as expected, and the surgeon was very happy with the result. The donor site was my right thigh again, 3rd donation from that same area. It’s wrapped in an ace bandage till Monday, and I’ll leave the dressing underneath it in place as it dries. Normally this is the area with the most pain – feels like the worst brush burn ever. However, I have no feeling at the surface from the middle of knee on up due to the lymph node dissection years ago. The surgeon said he took a very thin slice of skin and I guess that’s why it’s pain-free so far. What an unexpected blessing!

The wound/skin graft is painful and I’m keeping it tolerable with alternating Tylenol and Motrin every 3 hours while I continue my normal pain meds. When I woke up in recovery, the wound had the bolster dressing and nothing else on it – just a yellow dressing stapled around the wound! We were concerned with potential bumps or scrapes, especially getting in/out of the car and getting dressed/undressed, so the surgeon added an ABD and ace bandage for protection. I took the ace off this morning and taped the ABD in place. I must keep my leg elevated and still till the bolster removal on Friday. I’m on an antibiotic, Keflex, for a few weeks as added insurance that nothing interferes with the graft taking hold.

This morning I have a few windows open to enjoy the fresh air until it gets too warm. The birds at the feeders are entertaining me, as well as our resident chipmunk and squirrels. Murphy the cat is keeping me company till Bill gets home from work.

I made a healthy organic butternut squash soup with onions, carrots, and apples the night before surgery so I’d have lunch ready for the week. There was a lot of chopping and slicing involved, so I was very thankful for Bill’s offer of help! He took over the cutting board and went to town! The cinnamon makes it taste like Fall, and the cayenne gives it a bit of a kick. Yum! Tomorrow we’ll try juicing with our new (used) Breville juicer!

Even though I don’t feel like reading or watching TV, I guess that’s what I have to keep me entertained this week. I might try doing cross stitch or painting more rocks for the Cancer Institute’s walkway. I can do upper body exercises and figure out a seated yoga routine to do daily. Lots of possibilities to keep me seated and my leg elevated!

Onward to a successful graft 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!

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!

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!!

Hello Tissue!

I had to post right away with my great news! I just did my dressing change, and the bone is COMPLETELY covered with tissue! Woo-hoo!! I can still see the drill holes, but there’s tissue all around them. It has some distance to grow to reach skin level, but I can live with a divot in my shin :-). I wish I could post a picture, but then you wouldn’t be able to eat your lunch! Ha! Thanks once again for ALL of your positive energy, prayers, and pixie dust!