Help Ronda's Husband Fight his Cancer Battle
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- Hi, I would like to introduce myself. My name is Ronda, and this is the story about my husband's illness. We all know about cancer and how ugly it is. Well, there is a type of cancer that people do not hear about! How do you have cancer and the doctors can't treat you? Because they can't find it? But yet you keep getting the effects from the cancer! My husband has stage 4 lung cancer BUT they can't find the cancer. He started out with 6 spots on his brain, spent 2 weeks in the hospital on IV-steroid treatment to get the swelling down for them to do surgery. They removed the tumor, surgery (craniotomy), and did the biopsy, and it came back lung tissue. Boom - automatically stage 4 lung cancer. After he was discharged, the search began. He had to do radiation treatment for the spots on his brain and the crevices where the tumor had been. Then we proceeded to do PET scans and lung biopsies, which showed absolutely NOTHING. Nothing on the PET scan and after a couple of vigorous lung biopsies, nothing in the results. So, in other words, they can't locate the cancer, so they can't treat the cancer. Stupid me thought that if they can't find it, then it would be a good thing, right? NO! In fact, he keeps getting metastasis on the brain from the cancer. We were told that they are not able to do any chemo treatment because they have to measure the amount of chemo according to the size of the cancer. Since they can't find the cancer, they can't dose any chemo! We even went to MD Anderson in Houston, Texas. We were only offered immunotherapy but no confirmation that it would be able to break the brain barrier or even help. In fact, due to the condition from another source, we were told that it might actually do more harm because it might cause other damages to his body. So, we have been going through life without any treatment for the cancer, but meanwhile, my husband has deteriorated from what he once was to what he is. He used to work hard, play hard, and was always up to try new adventures. When we first got together, he used to climb Motorola cell towers all the way to the top, even where safety gear would not go, and along with that he spent time exploring caves. BUT now, he can't hardly get out of the house. He has had about 16 rounds of radiation to the brain and 3 craniotomies. The last surgery did damage. He has lost the normal function on the left side of his body, and his arm has "seizure"-like spasms on its own, but the body is fine. The arm starts moving around in the air on its own, no movement by my husband. This issue is now for the rest of his life. But all of us in life, we have taken the little things we do each day for granted. Just being able to use the bathroom on your own, getting up to get a drink, walking outside to see the weather. Just being able to get out of the house and see the seasons change. I never realized how blessed we were each and every day for all of the little things we do without thinking about it. We are currently in physical therapy and adding occupational therapy as well. But all of this also comes with a GREAT financial cost! I have been blessed in my life to have some understanding bosses, but unfortunately, without my husband working and the loss of his income for a while now, we are struggling. Insurance has costs, and the deductibles are high, especially when you always meet your deductible for several years in a row, and it was set at a very high amount for an individual. We all know the cost of everything has gone up (just look at the price of eggs). I used to work 2 jobs, but now with my husband's health, I can't. He is not able to even go to the bathroom on his own yet. We have fallen behind on a lot of our bills, not only medical but all types of expenses. We have been behind on rent and on numerous other bills. He doesn't fit in the typical criteria for most cancer patients for help and assistance, especially since there is no chemotherapy. As I was told once, cancer is like a roller coaster; you have a lot of ups and downs. You think one minute all is good, and then the next thing you know, your whole world has been turned into chaos. You literally feel like the final thread that you are holding onto is starting to unravel as well! Lack of sleep for both him and myself even makes life for me hard to function properly some days. Always watching his sugar levels since he has now become a diabetic along with more new health issues. I cannot physically or mentally do 2 jobs and take care of my entire household and take care of him plus provide enough to cover the bills. We both have been proud people and hate to ask for help, but it has come to a time where we need any little help that anyone would want to give. I know that life right now is tough for everyone. But if God puts it in your heart to help, we would greatly appreciate it., if you make a donation or not if you would please pass this along to help us.Thank you, and may God bless you tenfold. My husband is wanting to tell the story about his health and how it came about. The reason is because the first initial problem was his feet, but several doctors had missed it. There is no true guidance for us to look at or expect. No signs or symptoms for what is going on or what stage it might be in. Literally I do not believe any of our doctors have a plan for his health care. We are doing this on a Facebook page we will include the link as soon as we can. My husband wants to tell his story so if some one else is going through something similar it might help them. So I will be adding what he has written:
I want to talk about a funny way that our bodies work. I am going back about 4 years or so. I have worn boots my entire adult life. I always had good well made boots, no cheap ones. My Grandparents taught me to protect my feet so I did. Four years or so ago I started having trouble with my feet and ankles. The only way that I can describe it, was it felt like someone took a 2x4 and beat the bottoms of my feet. When I would wear my boots, my feet felt every eyelet and seam in my boots. I could not walk unless I had some sort of protection on the bottom of my feet. Then it moved up to the side and the ankles. We bought every kind of boot, shoe we could and nothing worked. We went to the doctors, even the specialists (orthopedic) and they said that my feet, ankle and knees were shot. They told me that I needed to do Cortisone shots into the ankles to help with the discomfort and had to buy ankle (supports) braces to wear in my shoes. Well it still did not give relief. Then we started to notice that I was tripping on rugs around the house. My left leg wouldn’t automatically lift up on the rugs instead of tripping on them. I had discovered that in my brain I was telling my leg to lift up an inch to avoid tripping on the rug but my leg was not listening and did not respond. We had several different doctor appointments and the conclusion came back similar, My feet, ankles and knees were in bad shape. I was supposed to get a total knee replacement, but they could not do anything for the ankles/feet. So there I was after having several appointments, still no relief. I would mention my feet to almost every doctor I would see. But no one was able to help find the problem or fix it.
We move to Feb 7, 2022. I had worked all day and I was finishing up at my shop. I walked about 20 feet and I lost control on the right side of my body. I fell, bounced on the floor. Luckily my phone came out of my pocket and I was able to tell Siri to call my wife. She called the emergency folk and everyone showed up. I was still conscious the entire time, but just could not get control of the right side. The ambulance had taken me to the closest hospital.They did a scan and found 6 masses on my brain. They did not have the resources to take care of this so they sent me by ambulance to the University of Tennessee Medical Center. I found out that I had a tumor and 5 other masses on my brain. I had to stay in the hospital on IV Steroids around the clock for about a week and a half before they could do the surgery (to let the swelling go down). After the steroids I started feeling a lot better. They did the surgery and I was informed that the tissue from the tumor was sent to pathology to be tested and it came back lung tissue. We were told that anytime cancer metastasizes it is automatically stage 4. My lung cancer had made it to my brain! We had a couple days stay in the hospital and then home. After they took out the tumor I could walk a lot better, everything seemed to be better except the top of my head hurt. My incision from the surgery was not healing. Where they had removed part of my skull(skull cap) I could feel it move. There was a small spot that was not healing. So about 2 to 3 weeks later my left index finger started to swell up. It ended up getting huge. We set up a telehealth visit with a NP at our PCP office. They seen my finger in the video and said "no we need you to come in to the office" Once I got to the office they had noticed a red line running from my finger all of the way up my arm. They told us to go straight to the ER!. They said the red line was trying to make it to my heart and that it was serious so we needed to go straight to the ER and don't stop anywhere else. Now the fun begins. We went to the ER, they put the IV in the same hand that had the swollen index finger and red line. But I was good! We sat in the ER waiting for a while and a while! They had put IV to help my body out. Hours later the doctor was ready to see us. They took us back to what seemed like a coat closet, then the They did a quick exam and thought that some antibiotics would work on my finger. We were about done with the exam and I had to use the restroom. They helped get me up to use the bathroom and I won the lottery!!! the blood/fluide started to leak and some what squirt. I ended up having blood running down my head. At that time EVERYONE in there started to jump around like little rabbits. Needless to say we ended up with another hospital stay! 2 IV's with antibiotics going constantly. Well now I had a brain infection and we stayed in the hospital again. The doctor took out my skull cap and replaced it with titanium. I am begining to be the bionic man!! lol But honestly throughout my experience with this "Cancer" they can't find, I feel my best on about 6mg of steroids combined with an antibiotic. My body felt good, not weak or lacking. My brain was firing on all 4 cylinders as much as it could. But eventually the antibiotic would run out and my old normal, ran down fatigue self would show up again. I had mentioned this to all my doctors but they told me that the antibiotic has nothing to do with my Cancer / brain Mets....... to be continued.
Organizer
Ronda Symons
Organizer
Knoxville, TN