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Charlotte Drainer shares about her Joe:
ReplyDeleteIN MEMORY OF Joe Drainer 40 yrs old Lumberport WV
Joe was diagnosed May 2010 with stage 3 melanoma on his upper right back shoulder blade. He waited way to long to be seen by a doctor one reason was fear and the other was no insurance. His ...melanoma was nodular and it was huge 5cm X 6cm X 10mm deep, it was ulcerated, in 2 lymph nodes basically everything bad.
We NEVER gave up faith or hope that he would beat this monster. He completed 1 year of interferon and things looked good afterwards. He was hunting and fishing and enjoying the kids he had a plan EVERYDAY he wasnt wasting any of his time. Jan 2012 we found out the cancer was in his right lung, 2 spots one was 1cm and the other 4mm. He started a clinical trial March 2012 I guess it was a little late ....the cancer had already exploded, it was throughout his spine, in his liver, his stomach and of course his lungs.
April 19 we thought his back went out it was a tumor bleeding and causing spinal cord compression. He spent 18 days FIGHTING in UPMC hospital where he passed away May 7 2012.
He is terribly missed by me his wife of 20 (10 days short of 21) years, his son Matthew (21) and his wife Kassie Drainer, son Tyler Drainer (17) and princess Kaity (6). We were going to have our first grandbaby (a girl Matty Lynn) next month (July 2012)
and missed by tons of friends and family.
Believe it or not the picture of Joe is only 3 days before he went into the hospital.
Please ....if u have a mole that is changing or new see a dr. right away DON'T WAIT.
Our melanoma story began in Spring in 2009. Most cancer patients know the exact date of their diagnosis but with Eston nothing has ever been clear cut. He had a spot on his right ear that itched a little and looking back that was a clear sign something was wrong but we did not know much about melanoma at all and what did know was black growths meant a cancer. We did not know it was this deadly beast of a cancer either. His spot was a little darker than skin color and honestly he put it off thinking it was a cyst. My best guess is 2 years of putting it off until finally it bled and I was able to convince him it was more than a cyst and if it was a cyst it should come off. First we went to a regular doctor and she did not like the spot at all and sent him to a dermatologist to have it looked at by someone with a little more knowledge than her about skin lesions. The dermatologist said it was more than likely a Spitz Nevus which is benign. It is common in children but could be found on adults as well. He said it could be a skin cancer but we never heard the word melanoma at that visit. They did a biopsy and a week later called and said they were not sure what it was yet. It was either a Spitz Nevus or Spitzoid Melanoma. They were going to schedule a surgery to do a wedge shaped excision of the ear and just take it all off and then hoped to determine exactly what it was. It is not uncommon for some diagnostic troubles between the benign spitz nevus and Spitzoid melanoma. We had a consultation with an ear nose and throat doctor and surgery was scheduled. We kept hearing you’re so young and I'm sure it’s benign. It's unlikely to be melanoma. I know the doctors were just trying to be supportive but now we know age has not one thing to do with Melanoma! Surgery day came and it was not a big deal. Eston had a couple knee surgeries before so we were calm and knew what to expect in general. The doctors said we got it all and now it’s off to the lab to determine what it was exactly. We waited and waited for news but after three weeks nothing. Then the appointment cards started coming in the mail...lots of them. Dermatology, ENT, Radiology, Oncologists...and letters about scans and how to prepare for them. We knew it was cancer then. I went online and did some research about what we were dealing with and I was DEVASTATED, crushed.
ReplyDeleteENT was the first appointment other than the scans. This was big time stuff. They explained what Spitzoid Melanoma was and they wanted to do a surgery to remove lymph nodes. I thought ok lymph nodes are little, so a few little incisions. That is not how it works. They wanted to cut my handsome hubby from his ear down the side of his neck and across his throat just past the Adams apple. I could only cry and Eston was like always so strong. He said “ok Filet me open". The also wanted to take out the spit gland and re-excise the ear as well. Even though they had gotten it all they wanted to be sure to take more healthy tissue now that it was melanoma and it was deep, 3.3 mm. This all was pending what the scans showed. A week later scans looked good. Nothing was showing up. The tumor board thought the best action was to do the neck dissection and go from there. Surgery day came July 2nd 2009 and it was a long hard day. Eight hours of waiting and hoping. I finally got to see him and it was so shocking to me...I turned around and felt as if I was going to pass out as soon as I saw his necklace of staples and three drains sticking out of him. The nurse was awesome and said he is ok come and see your husband. What was supposed to be a 5 hour surgery was and 8 hour surgery and what was supposed to be a 3 day hospital stay became a 7 day stay. Thank goodness I had my wonderful mother in law to help me through this. We waited together and that made it a little easier. I had no strength through this part of our journey at all....at least not each night when I had to go home to an empty house with no Eston. The results came quicker this time. ENT had the task of telling us the news at his appointment to remove the staples. There was a positive lymph node in the spit gland. So it was good we did not just do the sentintal node because it would have been clear and that melanoma would have been growing away in its new home in Estons spit gland. The ear drained to a lot of different nodes.
ReplyDeleteThis is the point where I realized how bad this situation was. It had invaded the body and that meant it could go anywhere it wanted. Why had I allowed him to put it off? I still carry that guilt every day. I should have pushed him or just made him an appointment myself. Next came the radiology Oncology and consults with oncology about Interferon. Radiation was not too bad for him. He had 6 treatments on his ear face and neck area. Patches of hair did come out and he no longer has facial hair that grows on the right side of his face on the cheek are chin area. No big deal. He had some skin reddening and slightly sloughing of the top layers of skin. Horrible dry mouth and had several weak area in the molars on that side. All fixed up by his dentist. It took us a bit to decide on Interferon because the doctor had no opinion either way if he should do it or not and it was toxic stuff. The one thing we kept coming back to is if it came back would he feel like he had not done everything he could to try to stop it. The answer was yes to Interferon and no to the possible feeling he had let it happen later. Interferon is nothing to take lightly. It was so rough on him. He was still able to get up and work but fever and puke breaks were the norm. He took on a different shift through the high dose. Over nights. He would work at night and get off at 7 am and we would go to the hospital for infusion. That took about 3 hours total. Home to bed. I felt so helpless. The only thing I could do was stay by his side with cool rags, Tylenol and a bucket. He lived on water, juicing and milkshakes for that month. Low dose was better and he could eat in small amounts even though the weight kept coming off and his hair thinned and the puking continued. His joint pain was so bad he would have to wrap his wrists in ace bandages to help. The pressure on them eased the pain. His memory was fading and it was like he was going through the motions just trying to pass 11 months of this torture. I was the one to give the shots and it made me feel horrible. I felt like I causing him this pain and sickness when I only wanted to take it all away from him. Nine months in he was having horrific headaches and weakness on the left side. This added a neurosurgeon to his list of doctors. An MRI was done and there found a cluster of tiny lesions on the brain in the right temporal lobe. They were sure it was melanoma, no question. Stage IV melanoma. " We need to move fast, you are young and it is contained to one area. Whole brain radiation after surgery and there is a good chance you can beat this." Tests and more test and within 2 weeks brain surgery. We took a little get away for three days and came back for surgery on September 2nd 2010. The doctors came out and just said we cannot confirm this until pathology but we could not find any melanoma. They knew they were in the right spot because they were using a stealth technology and it just wasn’t there. They took out the area that had shown the lesions on the MRI. For this surgery I had lots of people there with me waiting and we were all in shock and so happy. I had a lot of Facebook melanoma friends waiting to hear some news as well. I think we were all in shock. I handled seeing him much better this time. He was so cute he said fold me up and put me in your pocket and take me home when it was time for me to leave.
ReplyDeleteThe next morning we learned that he could not walk or even stand on his own. This was scary to see the love of my life that was always so strong this way. After 3 days they let him come home with a walker and strap to wear around his waist so I could hold him up. Anti-seizure meds and anti-swelling meds and within two weeks he was back on his feet with a cane for a little bit. They wanted him to go to a rehab facility but he said no. He wanted to go home and a physical therapist trained me how to help him safely. He did great!!! So proud of him. The results came back negative for melanoma, negative. The only thing found was a bit of swelling on the brain which must have come from the radiation. They decided he had enough of the evil Interferon and was reprieved of going back on it after the surgery. Eston has had lots of other false alarms along the way everything from swollen lymph nodes, two lumps in his back and a swollen leg. Thankfully these all have been tested and cleared of any melanoma. He is so strong and sure that he has beaten his melanoma. He likes to say Melanoma is too scared of him to ever show its ugly face again. He is my hero. I would have never made it through half of what he has had to endure. Melanoma is serious business and I more than he struggle with that fact every day. In general he is a take it as it comes person...I however have a nasty habit of borrowing trouble and tend to think we are just sitting on a ticking time bomb. We both have moments of weaknesses but together we are finding our way through our new life with Melanoma. It may always be there but it will never when no matter what happens. So for now Eston is still stage III A and we live, pray, wait and help out in the melanoma community when we can. He wears his scars for the world to see every day and I could not be more proud of him being a champ for the looks he gets once in a while and for telling people what happened to him. I am so grateful for our support system of fellow melanoma families. Cancer can be a lonely place but together we get through each test, treatment unknown spot or lump.
ReplyDeleteShannon Watton shares: 35 years old. Stage 4 Melanoma.
ReplyDeleteIn 2010 I had a mole on my left forearm that was changing. It had been changing for about 6 months or so but I ignored it. Mom kept nagging at me to get it removed, but I still put it off. Since my family doctor had retired 4 years earlier, I had to sit in our local ER waiting to be seen by a doctor. This was Nov. 2, 2010. After a 6 hour wait the doctor looked at my mole which had started bleeding a few weeks prior. She told me it was really angry looking and she would remove it there and then. When she had it all cut out she said it didn't look too serious but she was sending it to be biopsied as a precaution and she would only call me if it was bad news. Nov. 10 I was just getting into my truck to go to work and my cell rang. It was her. She proceeded to tell me that it was melanoma and that I would be seeing a plastic surgeon to have more tissue removed.
The next week my mother and I met with him and he explained everything to me. He said that 1-2mm was bad, 2-4mm was really bad, and then there was mine... 6mm. He told me he was bumping surgeries and putting me at the top of the list that I was priority. Within 2 weeks I was in my first surgery. A large area of tissue was removed and a skin graft done. They also did the sentinel node biopsy at the same time. This was Dec. 8, 2010. He called the first week of January and told me it was positive. He had sent a requisition to Halifax for me to see another surgeon. I was in her office within 2 weeks. She also put me on a priority list and I had my second surgery Feb. 7 where she removed all the lymphnodes from my armpit. I was also scheduled to meet with an oncologist and a dermatologist.
My oncologist (who is the most amazing, kind lady I have ever met) sent me for a PET scan. When I returned to see her for the results she also had my lymphnode results. 2 out of 29 were positive. She was that was pretty good odds for me. And my PET scan showed a tiny spot in my lower left lung. So I would be starting interferon. IV for 4 weeks and injections for 11 months.
Interferon didn't like me. The first week my liver enzymes were through the roof and my kidneys were spilling protein. We had to wait 2 weeks for my levels to return to normal and we tried again at half dosage. After 3 treatments my enzymes for up again so we couldn't continue. She told me that we would keep watching and there were new drugs coming that we could look at.
In September 2010 my CT scan showed several "spots" in my lungs. I was now officially labelled metastatic melanoma. In January 2011 my tissue was tested to see if I was eligible for BRAF which was now available here. I, of course, did not match. So then I had another meltdown. But I got over it, and kept my positive attitude just the same. I had a CT in February and my oncologist called me as soon as she got the results. Several of the "spots" had just disappeared. She couldn't explain the real "how" or "why" but that it was very good news. Since then I have had another CT and there are no changes to the remaining nodules. My oncologist is very pleased with me. She told me to keep doing what I am doing, and unless I start to get sick or these nodules change we will sit tight and wait. I see her every 2 months, my dermatologist every 4 months. I have CTs every few months as well. But so far so good. We do have another treatment that became available here in April, so we will look at that if we need to, but for now we both agreed to wait.
Since I am not a "sun worshiper" it appears that my over exposure was from my arm hanging out the window while I drive. Who would have thought.
So for now I am living my life to the fullest. Doing all the things that I love, being thankful for all that I have, and trying to educate people on Melanoma. AND planning my wedding to the most amazing guy in the world who stood by me after I was diagnosed and through all the ups and downs. We had only been dating 2 months when I was diagnosed.