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!

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.

More Surgeries

I can’t even remember if it was 24 or 48 hours after my last post that I learned all margins from the tissue removed on February 6th were positive. Let’s just say that I lost it. Thirty minutes of feeling like I couldn’t do this anymore finally rolled into a request for chocolate marshmallow ice cream to give me the resolve I needed to keep fighting. Yup, that’s all it took – some snuggling with my hubby and a bowl of ice cream. I’m back in fight mode!

In an absolute whirlwind of planning February 12th, I had surgery scheduled for the next day to have a wider and deeper excision made. Because of all the scar tissue in that area, the surgeon had difficulty determining where the tumor ended, hence positive margins. This surgery would try to get all of it, and it DID. He excised down to the bone and tendon, even shaving some of the bone where the tumor stopped, just in case. He used a vacuum dressing that applied negative pressure to the wound and drained it, encouraging tissue growth needed for an eventual skin graft.

The vacuum dressing supposedly creates tissue growth at 400% faster than without. I had to carry around a battery pack that also captured the drainage attached by a long tube that I threaded up through my jeans. It was noisy constantly. All of that was minor at the first dressing change. A visiting nurse came to change the dressing every M-W-F for almost 4 weeks, but the first one I will never forget. Let’s just suffice it to say that it was way more painful than either of us expected. Even the surgeon was surprised at the level of pain I experienced. The nurse believes that the burning/stings were from nerve endings, and that the major pain came from the exposed tendon and bone (tibia). In hindsight, the surgeon could have prescribed a numbing agent to be added to the foam prior to removal. You can imagine my anxiety and stress as I anticipated each new dressing change. Fortunately, the tissue did regenerate, the nurse added a barrier to my tendon and bone and, after the first week, the dressing changes became more bearable, but never pain-free. Whew! Glad to have survived that! Once again, Nurse Bill was wonderful!

I revisited the surgeon on March 10th. While he was pleased with the tissue growth, I still needed tissue to grow over the bone. He scheduled more surgery for March 13th to drill holes in my tibia to encourage that tissue growth. I asked if it would be painful (it sounds painful, right?!). He looked at me as though I had asked a silly question, and said of course not – it’s just like a dentist’s drill, very fine, very small. He listened to my experience with the vacuum dressing, including the continued pain after the dressing change when the pump was turned back on, put the vacuum on hold, and switched to a wet/dry dressing instead. Relief finally! No battery pack, no tubing, no noise. The silence was most wonderful!

In the meantime, I found a new, very small tumor in my right thigh, as I often do. Really, there have been times my leg is like a popcorn machine! The surgeon made time in the OR schedule to also remove that at the same time he did the drilling on March 13th. Done.

This week the tissue is growing over the bone and my thigh incision is healing well (not a big deal). The visiting nurse now comes on Mondays and Thursdays, and I do the dressing change myself all other days. I actually like doing it, probably because I have complete control over the entire process. The other good news is that I can finally take showers again. So wonderful! I’m not taking any narcotics as of Saturday, and the pain level is manageable – no problem. I’m not supposed to walk much more than what is required of normal daily living (bathroom, meals, etc.). I really try to avoid any kind of bump or movement other than a normal step – I really take my time and watch where I’m placing my foot. Level surfaces are the best. I’m not driving yet because I’m not sure that I could move quickly enough in an emergency, like slamming on the brakes.

My next appointment with the surgeon is March 31st, with the skin graft finally scheduled for April 3rd. Two weeks off my foot will be needed to be sure that the graft takes. Then I’ll be ready to go crazy!! I’m sad that I’ll miss Easter with my family, but realize the importance of making this graft work after waiting 7 weeks for it.

I’m feeling great and started back to work on Monday. There’s so much to do and it was starting to stress me out. One month of FMLA no pay was enough to give me the stress-free time I needed to concentrate on healing. And I’m off the chocolate marshmallow ice cream diet!

Thanks to all who have sent cards, visited, phoned, got me out of the house, brightened my home with flowers and wonderful scents, and have continued keeping me in their thoughts and prayers. It all makes a difference in my day and keeps my spirits high. I appreciate you all SO much!

Surgery and 1st Week Post-op

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

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

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

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

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

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

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