I am a mother to 3 amazing human beings. I live in the NW panhandle of Florida. I'm originally from Northeast Texas but I moved to Florida in July 2013. My oldest son lives in North Carolina. He is 30 years old and was in the US Marines for 5 years. He's an amazing father to three awesome little boys, and a baby girl - my grandbabies. He's married to the best lil' mama of those boys who enjoys being outdoors letting their imaginations soar. My daughter recently moved to MD where her husband was just transferred in the Air Force. She is 24 years old. She is a young mama to two more of my adorable grandbabies. And my youngest is 20 years old, he recently moved out and is on his own about 30 minutes away from me. He is a hard worker and figuring out his place in this big ol' world.
The story I want to share with you is one that when I look back, I am amazed that I walked the difficult journey and am living to tell about it. It all began in March 2021 when I went to a Dermatologist about a mole on my chest that changed colors and had begun bleeding. They took a biopsy and called me with results while our family was pulling into Disney World for spring break. They told me that it was confirmed as melanoma and I needed to get back to the Dermatologist as soon as I could. Well, I told them I just pulled into the "Happiest Place On Earth" and they said to enjoy my week and then scheduled me for a follow up when I got back home. "Enjoy myself", they said ..... fear immediately took hold of me and I hoped Dr Google would relieve my fears. NOPE.... don't ever get on Google after getting medical results over the phone. I immediately called my sister, hoping she would calm my fears. She did help some but I heard the fear in her own voice and that was not settling. After spending Spring Break at Disney, pulling out my phone at night to do more "research" on the news I had found out, I was going to prepare myself for my Dermatologist follow up and make sure I had all the questions prepared for my follow up visit. I went back to the Dermatologist for the follow up, they gave me the 3.8 stage news, and all my questions seemed to faint away. I knew 3.8 was not good from what I read the week before at Disney World. I was scared. I wanted to blame someone but the only person to blame was myself. All the stupid decisions I made when I was younger..... laying out with oil, not putting sunscreen on, laying in tanning beds for years, etc..... I wish I had a time capsule that would take me back to those days and tell myself what would lie ahead of me in 20 years.
We didn't have health insurance at the time because we never went to the doctor. Just to get a phone consult with the oncologist that my dermatologist recommended cost me $50,000 out of pocket. So on April 23, 2021 I ended up having to get a WLE (Wide Local Excision) at Moffitt Cancer Center in Tampa, six hours away from our home. We made at least 6 trips there over the next 6-8 weeks before I transferred to a local oncologist.
Post surgery, they recommended Immunotherapy treatments but I was skeptical since it was "just skin cancer" and I had decided I would be smarter out in the sun .. and actually sit in the shade from now on. So I requested that we do a year of PET scans every three months and ultrasounds of the area where my surgery was and the oncologist agreed that if that's what I wanted, he'd respect that.
Let's just say, we got health insurance after that ordeal.
As I said before, we didn't typically go to the doctor unless we were sick, so I hadn't been to the dermatologist in 10 years prior to finding this suspicious mole on my chest (yep stupid I know), so we didn't have a regular family doctor. After this WLE surgery, I decided to get ALL THE THINGS checked for me. I made appointments for general care, and OB/GYN (another doctor I put off for a long time).
Grab your popcorn because it's about to get real.......
Since I was starting routine medical care for myself, I told my husband, Brad, that after all that I had been through I'd like for him to start routine care with a local doctor just to start a file. He currently had diabetes and heart problems ran in his family so I was thinking he should be monitored more for that. He reluctantly agreed and after routine lab work, he gets a phone call from the doctor with shocking news we were not expecting at all. The doctor said the lab work showed that he could have Acute Myeloid Leukemia. WHAT????? He shook his head no and thought it was a mistake at the clinic where he got his blood taken. So we requested another lab draw at a different clinic. After three sets of lab work confirmations, Leukemia was repeated again. We were told to get to MD Anderson in Houston (we live in FL) asap. (You can't make this up .. the only symptoms he had at the time was getting a little tired but don't we all nowadays?)
So August 28th, 2021 we were checking in to MD Anderson where my husband's home would be for the next three months. He went through 4 rounds of chemo, countless bone marrow biopsies, platelet infusions, and blood infusions. We had family come and visit, donate blood, and friends / neighbors back home that did a huge fundraiser for our family. The support we had was overwhelming.
With Christmas approaching, I asked his oncologist if there was any chance he could come home for Christmas even if it was for just a few days .. she was very confident that he would be able to as long as his platelets and blood count were all good before flying.
December 23, 2021, after receiving infusions, he was loaded on a private plane (provided by his generous brother) and headed home to see his family after three long months of being gone. Our daughter and her family, including our 12 month old grandson at the time, our 18 yr old son, and my n-laws, who lived just down the street from us, all spent Christmas Eve and Christmas Day together. Towards the end of Christmas Day, Brad was unable to swallow well, making it difficult for him to take his meds ( I think he was taking 24+ meds a day including chemo pills). He wouldn't let me call anyone on Christmas Day but the next morning, I called his oncologist back at MD Anderson and she said to get him to the ER since he was unable to swallow and had shortness of breath still. Brad was very reluctant to go to the ER and just wanted to fly back to MD Anderson. I called his brother and told him of what was going on and he said he would see if his pilot was available to fly down and pick us up. Thankfully, he was available. However, I was skeptical of Brad flying in his condition so his brother spoke to Brad on the phone. To this day, we don't know what was said between the two of them but they do. After Brad got off the phone with his brother, I asked him if he wanted me to call the paramedics. He said yes. Y'all, if you knew Brad, that was HUGE.
Paramedics came and took him to the local hospital. I rode with him and it took them about 45 minutes for them to let me back in the room with him (Room #18, I won't ever go in that room again). Once I got back to his room he was still struggling to breathe/swallow. They were checking his heart because his heart rate was so high but I kept telling them it's because he couldn't breathe and that was escalating his heart rate. They checked his platelets and they were down to a 2.... there is no way he would've survived a flight at that number. Brad kept asking for ice or water and they wouldn't give it to him because they were still running tests on him. He gave me "the look" that if I didn't do something to get him some ice, he was about to cause a scene. So I begged them to give him a little something..... they gave him some ice and he settled down some but still was unable to breathe well. They kept relating it to his heart and I kept telling them it wasn't his heart. It was something else - why can't he swallow?? I felt like I was invisible at that point. I mean what do I know, right? I hated seeing him struggle so much. He was so defeated and weak from all the treatments at MD Anderson. He had to pee and asked me to help him. We got him a pee bucket and I helped him as he stood up to pee. He looked at the blank white wall in front of him and said "I'm not ready to go yet". I told him to just pee when he can..... Looking back to that day, I realize he wasn't talking about peeing.
I got him back into the bed. We are at a couple of hours after arriving at the ER by this time. I was standing next to him trying to help keep him calm, his eyes rolled back into his head and he stopped breathing and began to seize. I yelled and told the nurse so the Dr and nurses came running into his room. They said he was about to code... They laid him back and he continued having seizures and they began CPR. They tried to intubate him and they couldn't get access to his airway. His mother came back with me and we just held each other crying, hoping for a miracle. They asked us to leave the room so we went into the hallway. HIs dad joined us and we all just held each other's hands.... hoping for a Hallmark movie ending. Come to find out, there was a large hematoma around his airway and blood tests showed sepsis. The scariest moment of my life was when the doctor walked out of his room and told me they lost him. I had never had a panic attack in my life until that very moment. I yelled and screamed and hugged the base of the water fountain that was at my legs. A sweet friend of mine is a nurse there and she was working that morning..... she held me and helped guide me to what to do next which was to call someone. She asked about the hospital chaplain and I refused. I wanted the pastor of our church to come. She made the call and what seemed like a few moments, they were there. I remember walking into Brad's hospital room (#18) and seeing my lifeless husband laying there. I felt helpless - I couldn't fix anything. I'm a fixer and I couldn't fix him. How did this happen? It was Christmas.... our favorite holiday. All the traditions we had, was now marked by his death. It wasn't fair! This is stuff you read about happening to other people or on movies.... not to our family. After spending about an hour with Brad, his parents, and our pastor they told me it was time to call the kids. Oh my gosh - THE KIDS!!!!!!! My son was still at home in bed when the paramedics took their father away. My daughter had barely spent anytime with Brad since he went to MD Anderson, and our oldest son........ I can't even begin to describe the overwhelming anxiety I had where I would have to tell him about his father. My father-n-law wanted to be the one to call him and tell him. Watching my daughter and son having to come say goodbye to their dad was the HARDEST thing I've ever had to go through. To this day, that moment brings so many tears to my eyes. Brad died on December 26, 2021 at 1:30 pm.... and the worst part of it all, he didn't die of Leukemia. He died from chemo that caused his body to shut down crippling him from being able to fight the stupid disease. I didn't get to say goodbye.
Five months later, our son ended up walking down the football field without his dad at his high school graduation. We had a lot of family and friends there but it was still so hard. It's one of "Life is not fair" moments for sure. We've had several of those moments to this day.
So skip forward to dealing with my new life as a widow.....I am taking Zoloft, Temazepam, Xanax all to help with my grief and sleep, right? In April of 2022, four months after Brad died, I began feeling weird with an unusual brain fog. I wasn't able to comprehend time and my decision making skills were bad. I had to stop driving because I couldn't make a decision about pulling out into oncoming traffic. I would swerve off the side of the road (only the left side). I sold my house in May, moved to a different neighborhood in the same town, survived graduation and a house full of family, flew to Dallas for my nephew's wedding, and then flew to NC to visit my oldest son and newest grandbaby. While I was in NC, my body was acting all kinds of weird. I couldn't think straight, my memory was horrible, I was getting really bad headaches, and the left side of my body began to curl up. I emailed my oncologist and he told me to get to the ER immediately. I complained and told him I was on vacation visiting my family and he insisted I go. We had just sat down at a restaurant for dinner when my son stood up and walked around the table and lifted my arm and said "we're going to the hospital now". (My protector)
A few hours and a CT scan later, I found out there was a golf ball size tumor in the right frontal lobe of my brain. I was shocked but relieved I guess to know I wasn't crazy. Everyone, including my doctors, thought all the symptoms I was having were from the grief and/medication (not the left side of my body issues, just my memory issues and brain fogginess). The next day, June 15th, I was on a flight back to FL and had brain surgery on the 16th. They confirmed after biopsying the tumor that it was Stage 4 Metastatic Melanoma. Everything happened so quickly but I can say I felt like a new person once they removed the mass! Even my 18 yr old son said "I finally have my mom back". That was a scary time for me having to go through all that alone, without Brad.
My oncologist recommended the Immunotherapy treatments again and at the time I was so scared that I agreed to it. In fact, I found I was blaming myself for not choosing the immunotherapy originally and maybe this wouldn't have happened. My kids were scared, I was scared, so I agreed to the treatments even though I had read about the side effects that could happen. It was immunotherapy treatments or possibly having my kids plan a funeral for their mom. Within a few weeks of my brain surgery, I began the immunotherapy treatments and 5 treatments of targeted radiation where they removed the tumor. After 3 immunotherapy treatments, spread out over every 3 weeks, I was confined to my home with horrible side effects. All the top side effects that could happen, I had them all. I developed Colitis, Pneumonitis , body rashes, and severe fatigue. I was put on more steroids and medication to try and help with the Colitis and it took 8+ weeks just to feel somewhat of a difference. My oncologist did say that I needed to stop treatments for a bit and allow my body time to re-coop and re-hydrate. But he wanted me to start back on monthly boosters of immunotherapy soon.
During those 12 weeks, I had alot of time to think about my quality of life, pray to God for answers and healing. I was in a very dark and lonely place, especially having to go through this by myself and take care of myself without Brad. After research and prayer, I decided I had to seek an alternative way of living because this was clearly not working. I was also still following up with my dermatologist and getting biopsies after biopsies done every few weeks. I had a cyst on my back that showed up while Brad was still at MD Anderson and I told my dermatologist and oncologist about it and because it showed up on one my follow up PET Scans. They both agreed it should be biopsied. The results came back as Metastatic Melanoma once again so they removed it as well. After two removals, the margins finally came back clear!!!
Approaching the one-year anniversary of Brad's passing, I told my oncologist I didn't want to continue treatments and instead I wanted to allow my body a break so I can fuel my body with healthy foods and supplements. I reached out to a holistic Doctor in Marbella, Spain that I knew of personally through friends and family that had gone to him with huge success stories and still living and thriving to this day. I sent off my blood work for a cellular analysis test. I received the results back with recommendations of supplements to use, dietary changes I needed to make, and recommendations to visit his clinic for intense treatments over the course of 2 weeks.
I began the dietary changes immediately and added the supplements to my daily regime and within just a week or so, I could tell a HUGE difference in the way that I felt. My energy came back, my stomach began to act normal where I could leave the house, and I scheduled my trip to Spain for treatments in December. My best friend went to Spain with me and was such a monumental rock for me while I was there. We did a lot of research together and found some alternative treatment centers closer to home for us to check out once I got back to Florida.
Christmas came and went, the one year anniversary of Brad's passing came, the new year showed up, and I had to make a choice for my health. During the course of the past year and all that I had gone through alone, I told God I didn't want to be alone anymore. I begged him to bring me peace, comfort, and protection. I pleaded with him to heal my body but NOT in the way he healed Brad's body. I didn't want my kids to have to say goodbye to the only parent they had left. When I thought my prayers were going unanswered, He brought me peace, comfort, and protection in the form of a wonderful man. Not only did this man support my health choices in life, but he joined me on the journey and began implementing the same dietary changes himself. He encouraged me, He held me accountable, He loved me so fiercely. What kind of man would take a risk of being with a woman who's future is not guaranteed? I'll go ahead and answer that question for you.... it's the kind of man that God sends. God didn't create me to be alone or scared..... He created me to be loved and held just as He loves and holds me. This man God sent.... His name is Richard. His name means brave and strong.
In March of 2023, I felt another cyst or something swollen in the right side of my groin. I called my oncologist and he ordered a PET scan. It showed up on the scan and he ordered a biopsy of it immediately. On March 3, it was confirmed that it was Metastatic Melanoma... again. My oncologist encouraged me to start back on immunotherapy treatments and I told him I would not put my body through that again. He assured me it was the only thing that would work to kill this disease that kept moving all throughout my body. I told him that I would seek alternative treatments. Richard held my hand as we walked out of my oncologist's office and we found a treatment center in Tampa, FL. I enrolled in their 6 week program and moved down to that area to begin my treatments. I received Lymphatic Massages, Hot Saunas, Hyperbaric Chambers, Colonics, Vitamin Infusions, Ozone Therapy, Chelation Therapy, and Hyperthermia treatments. A lot of these treatments I received in Spain as well. So to find them in the US was very encouraging. While I was there, I had quite a bit of time to research. I began a workout regimen, and was able to cook healthy, and spent a lot of time in prayer. After the first 4 weeks, I had found that I could get the same treatments back home at different clinics and decided my time at the treatment center was done. I packed up my things and went home. My granddaughter was born that same day after I got home! GOD WINK!!!
Once I returned home, I purchased a hot sauna, I purchased a home gym along with free weights, I booked lymphatic massages, colonics, and infusions. I continued my gluten free, sugar free, alcohol free lifestyle and began to feel amazing. The inflammation that I had been suffering from diminished rapidly, and I got down to a very healthy weight for my age. I dropped 4 pants sizes and 2 shirt sizes.
On June 23, 2023, my sons walked me down the aisle to marry the brave, strong man in my life. He has stood beside me every single day. He has loved my kids and my grandkids like they are his own. He has also lost weight and feels great by doing the same healthy lifestyle changes that I have implemented. He's a firm believer that this health journey we are on is working!
In early September of 2023, I began feeling like I might need to get a PET Scan to see how things were progressing after implementing these alternative treatments. I had the PET Scan done and Richard went with me to review the results with my oncologist. He pulled up the PET Scan from 6 months ago, after I got back from Spain, and the most recent one.... side by side we watched the results of the scan. We saw a miracle before our eyes. The "hot spots" that were there before were either gone or had diminished in size considerably. Richard and I looked at each other with tears in our eyes and high fived each other. We needed that win!!!!! My oncologist told me that whatever I'm doing to , keep it up.... it's working!!!!! PRAISE THE LORD!!!!!
In November of 2023, I was feeling some pain in the left side of my abdomen so I requested another PET scan. When we met with my oncologist to review the results, it showed a jejunal loop within my left mid abdomen. In English, I had a lesion growing around my small intestine. At the time, it measured to be 4 cm without bowel obstruction/perforation. I was devastated. What happened to the good news I had previously received in September? My oncologist ordered a CT to get a closer look at the lesion and again, it was confirmed or assumed as metastatic melanoma. I asked my oncologist if it could be surgically removed and he didn't think I could find a surgeon to perform the complex surgery. So he recommended immunotherapy once again. I got up and walked out of his office. I just didn't understand where God was in all of this. It wasn't fair to continue this journey of medical diagnosis after medical diagnosis. I understand Melanoma, especially metastatic, is a very aggressive cancer but I was hoping everything I had been doing was "curing" this monster of a disease.
Deflated and emotional, Richard and I prayed and prayed for wisdom on what to do next. The next day I woke up thinking about the surgeon at Moffitt Cancer Center that removed my initial melanoma in April of 2021. I reached out to him and he had me come in for a consult the next week. After spending a great deal of time with him, he made me believe that he and his team could completely remove this mass, as they do these surgeries all the time. I asked if they could do a laparoscopic incision/removal instead of an invasive one and he said that there is a team that he works with that can do non-invasive bowel resection surgeries. I felt really good about that so we booked a consult with a surgeon he recommended for December 3.
A week or two later, the surgeon we met with called and recommended the more invasive surgery as he felt the lesion was too big to remove laparoscopically and would risk rupturing the tumor. He said he could get me into the OR on November 29th. As reluctant as I was, we agreed and got the surgery scheduled. After that phone call, we attended church the following Sunday and they prayed over me. Healing was spoken into my body and the pain in my abdomen actually left my body. That week we spent Thanksgiving with our daughter and her family and our son. I was able to eat without nausea and no pain. I was so happy! The day after and through the weekend, the pain in my abdomen returned. I didn't want to tell Richard because I wanted to believe God removed the mass from my body. I was also anxious for the upcoming surgery and was hoping I wouldn't have to go through with it. After I was prayed over, I requested ONE MORE PET Scan to confirm whether the mass was still there. I prayed and believed that it was gone..... but why was the pain still there? As we approached the day before we were to leave for Tampa for my surgery, the pain increased so much that I told Richard. We cried together but knew that the surgery was necessary but we also knew God would show up somewhere.
On the road to Tampa to begin my pre-op procedures, I received the results of my most recent PET Scan..... not only was the mass still there, but it had grown substantially in just three weeks from 4.8 cm x 3.7 cm to 5.8 cm x 5.4 cm! That explained the pain but that didn't explain where God was. We drove onward and checked into our hotel. After arriving at Moffitt Cancer Center to get some pre-op labwork done, we spent the next day together as I prepped my bowels for surgery (not fun, but necessary).
Wednesday, November 29, 2023, we check into the hospital for the unknown. The surgeon had come in to prepare us for all the risks and expectations of how long I would be there recovering after surgery. He said there were risks of leakage, infections, and how it could take up to 5-10 days for my bowels to wake up. I would not be released to go home until my bowels woke up. I remember laying on the hospital bed awaiting to be taken back by the surgical team, Richard held my hand I played my worship music on my phone with tears running down my cheeks. I had a peace that no matter the outcome, God was still in control.
After my bowel resection surgery, I woke up to my Knight in Shining Armor sitting beside me. I was in so much pain but knowing he was right there was a comfort I very much needed. He had tears in his eyes and said the surgery was a success. Over the next few days, I began to get stronger and stronger. I was determined NOT to be there for 10 days. In fact, I was up and walking the very next day. My bowels woke up on day 3 post-op and I was released to go home on December 4th, the day after my birthday! Five days after my surgery, we were driving home so I could continue my recovery. My follow up appointments were all to be continued via Zoom instead of having to make multiple trips back to Tampa. During my hospital recovery, God showed me His mighty work that He was doing behind the scenes while I was undergoing my surgery and this whole process. Through my faith in Him, He ended up answering many personal prayers I had been praying for over the past year. He is SO FAITHFUL!!
This past week, the surgeon called me with the pathology results of the mass. It was confirmed as metastatic melanoma - again. He said the mass had grown to 9 cm! Y'all, had I not had this removed, I would have landed myself a much worse outcome. The medical oncology team held a Zoom call with Richard and I to discuss future treatments on extending my quality of life by utilizing what's called BRAF mutation targeted systemic therapy. The BRAF mutation are protein cells found in the cancer itself and is found in 50% of melanoma patients. It's very aggressive and is what causes the cancer to spread to various cells in my body. They do not recommend immunotherapy as they have admitted it did not help keep the melanoma at bay since it came back in less than a year. The systemic therapy treatments do have side effects but not near as severe as the immunotherapy I was receiving. I believe that combining the systemic therapy along with my alternative treatments will give me a much better chance at receiving the quality of life that I am praying and hoping for.
I know my journey isn't over..... but I can continue to share the highlights of what is working as I try to help others that may be looking for guidance and/or answers for their own health journey. My priority today is to share the love of Jesus through my testimony. I have overcome everything that was set out to destroy me. There are days when I have felt like a modern day Job from the Bible, and days I have felt like David standing in front of my giant with a stone and slingshot. There are alot of unanswered questions I have on this side of eternity, but one thing that will always hold true is the Love of our Heavenly Father. Even when we feel all alone and abandoned, that's actually when you can feel Him most near.
On New Years' Eve, 2023, I began the systemic therapy pills (12 pills/day). Within 10 days, I stopped taking them as I had lost my vision (I was having black halo spots everywhere, my feet got swollen and I could barely walk, my chest/breathing got bad again like when I was on the immunotherapy treatments, and my nausea returned.) After following up with my oncologist on January 8th, we were told that these systemic therapy pills were in fact chemotherapy pills. WHAT!!!!! We were not told that initially from the medical oncology team at Moffitt. We asked several times if they were chemo pills and were told that they were not. If you read my story above, you'll know that I am not about to put chemo in my body after seeing firsthand what it can do to your quality of life. I'M ALL ABOUT LIVING LIFE TO THE FULLESET and living healthy, not toxic. God created us to live whole healthy lives and He's given us the tools to do so.
On April 8, 2024 I met with my Radiation Oncologist to go over the results of my most recent Brain MRI which I get every 3 months to monitor the swelling that developed around my surgery site. They say it's common when you've had brain surgery and radiation to develop what is called Radiation Necrosis, swelling of the brain due to radiation. She had seen the swelling develop last year and put me on 400 units of Vitamin E each day in hopes it would reduce the swelling naturally. Then she switched me to take Trental, a medication known to help reduce swelling. I was on that medication for 90 days. On April 8, 2024, she sat us down and told me that the swelling is nearly twice the size. If we don't get it reduced, I will begin having some of the same symptoms I was having when I had my brain tumor. She recommended Avastin immunotherapy treatments every 3 weeks for up to 6 months. She assured me that these side effects are not nearly as bad as the immunotherapy treatments I was on originally that caused me to be so sick (she even admitted that those immunotherapy combination was way too strong for what my body and I should have never been put on it).
After much prayer and research, we decided that we needed to go this route. So, on April 17, 2024 I began my first Avastin immunotherapy infusion in Pensacola. The side effects I had for the first two days following were migraines and high blood pressure. On May 15, 2024, I went for my second Avastin immunotherapy infusion and the side effects this time were not bad at all, praise the Lord! I continue to update this story of mine and I am in the process of continuing this treatment and I feel as though I'm on the path God has intended me to travel. I continue to trust Him as He is ultimately in control of everything anyway.
***UPDATE - on November 8, 2024 I had my last Avastin Immunotherapy treatment and on November 14th I received the amazing news that the Radiation Necrosis has significantly improved! My next full body PET Scan is set for January 15, 2025. I will continue to do what I know is working and I expect to update you with continued positive news!***
So as I continue to make healthy smart choices with the foods that go into my body and the supplements I take, I will not go down without a fight. I fight everyday to feel good and to love those people that choose to be in my life. LIVE EACH DAY TO IT'S FULLEST! WE ARE NOT GUARANTEED TOMORROW!
If you want to continue to follow my journey, I have a blog that I update regularly, click here to access my blog. Feel free to travel this road with me.
Never say, "that won't happen to me"....... you don't know what lies ahead. None of us do - but we can all do our part in keeping our temples that the Good Lord gave us holy and healthy. He designed our bodies to heal themselves - from within..... not from the outside. But God is also a great Physician and He works in ways we may never understand.
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