My name is Jerri Warburton. I am 44 years old and I have two wonderful children, a boxer, and a yorkiepom mix. I have wonderful friends and family, also. I have a lot of things to be thankful for. It just so happens that I also have melanoma. In April of 2020 I had a suspicious mole removed from the left side of my face. The original biopsy came back as melanoma and so I had to have a wide local excision and sentinel lymph node biopsy performed. I had a full body PET scan and brain MRI ( with and without contrast) in May of 2020 and they came back clear. So, my surgeon was comfortable just doing the WLE and SNLB instead of a full neck dissection (removing all lymph nodes on the left side of my neck) or a superficial parotidectomy (they remove the top of the parotid glad which is the main salivary gland in your face). On May 26 I had my surgery performed in Roanoke, VA. I took two weeks vacation from work and my sister drove me to Roanoke where we stayed in a motel for surgery the next day. I ended up having a purse stitch closure with a small skin graft to cover the hole that was left open. The graft was taken from the skin of my neck where I had the node biopsy so it worked out well. It was an outpatient procedure, so my sister and I went back to the motel and stayed one more night so we would be close if anything happened. The next day we went home and I rested and healed. On June 3,2020 I went back to my surgeon to have the staples and compression bandage removed, and to get the results of my biopsies. My surgeon advised me that the skin and tissue he had removed from around the primary site all came back clean (clear margins yay!) BUT there was a 3mm x 4mm tumor found in my sentinel lymph node. This gave me a stage 3C malignant metastatic melanoma diagnosis. My surgeon recommended targeted radiation to the head and neck because the node involved was a parotid node and melanoma likes to hide out in the basin and grow undetected. He also told me my oncologist would have a recommendation for treatment once he saw all the reports. I met with my medical oncologist and a radiation oncologist and began treatment the last week of June. I did 26 rounds of targeted radiation and simultaneously began once monthly Opdivo (immunotherapy) infusions. I worked full time during radiation and immunotherapy treatments. I was determined not to allow this beast to take over my life. Radiation ended in August and I did take two weeks work off then due to radiation burns and the fear of infection. I continued my once monthly Opdivo infusions and working full time. In September, after my 4th infusion, I began to notice that the left side of my face at my surgery site was swelling. It would come and go, some days worse than others, and it was unpredictable. Around the same time I started experiencing pain in my right shoulder. At first I thought I had slept on my arm wrong and it would fix itself. However, the shoulder pain continued to get worse. In October when I went in for my monthly infusion I brought these issues up to my oncologists and they thought the facial swelling could be lymphedema and would set up a consult with PT. I had my infusion in October and left waiting to get a call to set up an appointment for physical therapy to help with the lymphedema in my face. By the end of October I was in so much physical pain that I was waking myself up at night whimpering like a dog. I could not sit, stand, or lie down for more than 30 minutes without being in agony. raising my arms to apply deodorant or get dressed caused literal tears. On Nov 3, 2020 i had an appointment with my doctor and she sent me for X rays and put me out of work. The next day she called and said the X rays were clear so she was scheduling a PET scan and we would go from there. The scan was scheduled fairly quickly and it came back no evidence of disease just some brown fat activity that they said meant nothing. I was still in excruciating pain and so they then turned to lab work. My doctor checked my creatine kinase level and found that it was extremely high. This is a sign that my immune system was attacking my muscles and it needed to be stopped. On November 13, 2020 I was put on high dose steroids (70mg prednisone a day) and taken off immunotherapy. It took until January of 2021 for me to wean down the steroids enough to get a treatment. I was at 10mg a day of prednisone and resumed treatment in Jan of 2021. I was feeling better and so I joined my gym back and started slowly working out to begin building my strength and endurance up so I could return to work. I was on FMLA until Jan 25, 2021 and then requested a one month leave of absence when that expired. On Feb 2, 2021 I asked my doctor to release me to go back to work. I was still experiencing major fatigue and still had muscle and joint pain, but I was feeling so much better than I had been in November and decided it was time. He released me to work on day shift with frequent breaks as needed. I met with my employers and told them that I was trying to build back my strength and ready to come back to work. They did not have enough management duties to fill my full time hours on day shift, and 10 hour days at work with a one hour commute seemed like a very daunting task. So, we compromised and I decided to go back part time and work my way back to full time. My first day back to work was May 5, 2021. During the months of March and April I went to the gym daily and got to the point that i could walk 3 miles on the treadmill in an hour without being out of breath. i was using all the weight machines daily and consistently going up in weights. I felt great. After the first part time day at work my face began to swell. After the first week, i woke up and my face was so swollen my eye was almost shut. I was exhausted daily. i would get home form work and immediately sleep for 3 or 4 hours before waking up again. I thought work was really taking its toll on me. Memorial Day weekend it finally got very hot here and I decided to clean out my window unit AC in my bedroom. I pulled the vents and filter and it was disgusting. It was black with mildew or mold or yuck! I made a sink of dish water with bleach and soaked and washed everything and put it back together. That night I ran my AC unit. Within a couple of days I woke up in the middle of the night gasping for air. The only way I can describe it is like breathing like a gold fish out of water. I thought maybe I had breathed in some mold and it would run its course. After a couple days of that, on June 1, 2021< I called my oncologist and told them I couldn't breathe and asked if I could just go to urgent care. They said that was fine. The urgent care doctor listened to my lungs and could not hear anything. He said since he could hear nothing it probably was not pneumonia and since inflammatory issues are common side effects with my immunotherapy treatments he told me to start high dose steroids. So that day I took 60mg prednisone and called my oncologist and cancelled the treatment I had scheduled for the next day. The steroids seemed to help a little and so i took them and waited for them to do their job. on Monday June 7, 2021 I was back breathing like a goldfish and I just could not take it anymore. I drove myself to the emergency room and told them I was short of breath. They couldn't find any reason for me not to be able to breathe ( lungs sounded clear no nasal congestion etc etc) so they decided to do a CT scan of my chest. The CT scan revealed a massive mediastinal tumor that wraps around by airway and extends bilaterally to both lungs. It mainly extends to the right, and is pulling my right lung especially away from my chest wall and allowing fluid to build up. I had what is called a pleural effusion. That day they drained approximately 3 pounds of fluid from my right lung. They admitted me into the hospital because they wanted to run pathology on the fluid they drew off me. On Wednesday it was confirmed stage 4 melanoma. When I switched from full time to part time work on may 5 it cancelled my health insurance. I contacted the COBRA department at the end of May to look into getting COBRA started and sent all the required paperwork back by mail on May 26. There is a subsidy available for people like me that will cover my COBRA until September 30, 2021. However, there is a lot of paperwork involved and unless I send them $1900.00 (my monthly cobra premium) I have to wait until they process all the paperwork for my COBRA to go into effect. Now, it will be retroactive until June 1 which is great, but in the mean time no one will see me or treat me. I qualify for SSDI and I receive a total of $925 a month. Which almost exactly pays my monthly house bills. Which is why working part time was a necessity for me. I am asking for quite a bit of a starting goal but I know beginning October 1, 2021 COBRA is going to want $1900.00 and I do not plan on being dead by then. I also am planning on contacting ever cancer center that believes they can give me a shot. I see no reason why I can't beat this thing back into submission, but I am going to need A LOT OF HELP! I will need money to help me travel to cancer centers far away and have food and lodging, to pay deductibles and co pays because the $1900.00 a month is just for the insurance. Anything that does not go towards direct medical funding will go towards household items or getting my children back and forth from Arizona where they live to see me.
Hello everyone! I hope you all enjoyed a happy Fourth of July! I spent the weekend at home. It was way too peopley out, and I still am dealing with swelling in my legs and feet that makes it hard to be out for long periods of time. I had an appointment with my oncologist on June 30. It was a little underwhelming to say the least. He said since the swelling in my face had went down that we were going to assume that the rest of my tumors were just melting away. My issue with this is that up until three weeks ago he didn't think there was any cancer in my face. I was first told it was lymphedema ( and then was sent to massage that swollen lymph node to drain into the rest of my lymph system!) and when that did not work I was told it was side effects from my immunotherapy. it wasn't until I got out of the hospital that he said oh that is definitely a swollen lymph node, and we will watch it to see how this new treatment is working. So, we are assuming that it was cancer in my face AND we are assuming that because that swelling has went down that the rest of my tumors are shrinking, too. Now to be fair, I did not expect him to schedule a scan 2 weeks after starting the new meds. I did, however, expect him to have some sort of plan of action. This man told me to "live my life" and that I would stay on these meds until they stopped working. Once they stopped working we would decide what to do next. Then he said to call them if anything changed and he would see me in a month. I DID ask for a brain scan. I told him that I had not had one in over a year and that while I did not think it was in my brain because I wasn't having symptoms that I wasn't having symptoms that it had came back until I was half dead, either. He gave me a referral for a brain MRI. That is scheduled for July 21 (first available). I scheduled an appointment with my PCP for July 1 to ask my PCP to send my records and a referral to UVA. My PCP refused. He told me to have my oncologist do it after my brain MRI at my next appointment. I don't want to wait that long for one, and I didn't want to ask my oncologist as I am afraid to make him mad. That said, I just emailed my oncologist and requested he send my records to UVA for a second opinion since UVA is listed as a melanoma specialist. I have also contacted MD Anderson ( who does not require a referral!) and am waiting to hear from them. I am going to see what kind of programs they offer for people who are out of state. I need a better plan than just "assuming" and "we will cross that bridge when we get there" and I don't know how to tell this oncologist that without pissing him off. Worst case scenario I will fire him and find someone closer to home (I drive an hour to see him). Other than that, things are going well. I went three full days between home health nurse visits which was good. They did get 900ml of fluid off me this time, but they haad only been getting between 350-400ml when they were coming every 2 days. Also, I sat up this time so the fluid could reach the catheter instead of settling on the opposite side of my chest. Once I get to less than 50ml every 3 days (3 times in a row) then I can have this catheter removed. I have a ways to go BUT we are headed in the right direction. I want to thanks everyone who has reached out and messaged. You guys mean the world to me. Right now we are in kind of a holding pattern until I can get some concrete answers regarding this treatment and exact size and location of all my tumors. From what I am reading, malignant pleural effusion from melanoma is pretty rare (between 2-5% of cases) so I am hoping one of these research hospitals will be interested in my case. I did stop reading there, though, because the rest of the information just sucks and is outdated. Ha Ha Positive information only! Also, none of what I read mentioned any sort of treatment so I don't know how treatments would have effected those outcomes. I will ask that you guys keep me in your prayers, and keep sharing my Caring Bridge and GoFundMe pages. I hope everyone is happy and well! Love to all!!!
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