Maddy' s Journey dealing with Sarcoidosis, Hodgkins Lymphoma & Fibromyalgia

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Who I'm I- My name is Madeline, 50yrs old, born in NY raised in Puerto Rico. Living in Massachusetts. Single mom of two amazing son's, a 30 yr old and a 23 yr old US Marine.

My illnesses are-Cancer survivor, Hodgkins Lymphoma diagnosed in 1992 while I was pregnant with my now 23 yr old son. After chemo and radiation all the side effects from aggressive treatment started showing up. I must say my hidden illness was depression, having been there most of my life due to abuse. Once you hear the "C" you feel your life is over. Having been diagnosed with cancer in a way also saved me from certain death. I was in a relationship with the father of my unborn baby and when I tried to leave no one helped out of fear. On and off the lymph nodes on my neck would get swollen, back home they would brush that off saying "oh that's nothing you might just be fighting an infection or your going to get a cold. But once I was pregnant and the lymph nodes got swollen again they didn't go away, instead it started getting bigger at an alarming rate. By my 6th month it looked like I had a grapefruit on the right side of my neck. While it was small and I felt it, I went to a prenatal visit and mentioned it to my doctor and she referred me to get a biopsy. Feb 14, 1992 I had the first one, it was scary, it was done with local anesthesia and here I have this surgeon cutting me on the side of my neck and I heard him say, to his assistant, "Make sure you suction well that blood, remember the jugular is there". I went back the 17 to get the results and I was told the results had come up inconclusive, they had to repeat the biopsy. Feb 21, I went to get the results and a female surgeon with the results on her had, asked me If I was having my 1st baby, I said no I have another son. She took me to a room, told me to wait there and she left the results on the table right in front of me. Unbeknownst to her that I could read English. All I remember was reading Hodgkin's and advisable treatment of chemotherapy and radiation. Once the surgeon was back, well he gave me the diagnosis in Spanish. I felt my life was over, here I was a single Mother of a small boy and another on the way, and in a very abusive relationship which turned surprisingly worse once I was diagnosed with cancer. I went to a government agency and asked for help and was threaten to have my son's taken away. Backing up to when I was diagnosed, my baby was supposed to be born in May 92, but doctor said they had to induce labor because the cancer was spreading too fast. I would guess being pregnant and all the hormonal changes had something to do with that. March 10th, they induced labor only to come back and try to stop it to do a Amniocentesis test at the same time and tell me if I moved while they were doing it, myself or my baby could get harmed. So test is done and they tell me I had to wait a couple of days for the results. They put me in an empty wing of the hospital in a room all by myself and there by myself I had my 5 lb baby boy. I had to wait until I saw somebody walk by the door, and yelled "I had my baby! The nurse told me you had him here in a un sanitized room now they will have to keep the baby here a while. I forgot to mention there was only one doctor attending, because the others were on strike. After a battle of almost 6 month in court fighting the father of my oldest son,( his reason I was going to be an unfit mother due to a cancer diagnosis ) I left Puerto Rico, to get the treatment I needed. One year of treatment and very good care at MCV -Richmond, VA. Here I have to add some people offer to help, and once they are in it they realize how much help and care a sick person needs. And they can't deal with it, but that doesn't give that person the right to be abusive to the sick person. This time it was not only me but my son's also, I would be crying on my bed, because I couldn't even move to take care of my son's. During my treatment I would spend three weeks in the hospital or ICU and one week back where we were staying. Knowing what was going on that just 1 week there, I would always be crying in the hospital and threatening to walk out because I knew my son's needed me to protect them. Doctors got a social worker and she helped us move out. In 1997, I moved to South Florida, once again someone made the promise to help me and it turned out to be false. I learned to rely on friends, and moved to Orlando, Florida. I tried to get back into a normal productive life, and went to College and took a certificate course under Criminal Justice for Police, Fire & Medical Dispatcher this was around the same time of 9/11. I worked at a Supermarket Bakery and a Dollar store. After a while the illnesses started stacking up, Hypothyroidism, high blood pressure, diabetes type 2, multiple abdominal hernias, Fibromyalgia, and now Sarcoidosis lungs and uveitis, bring me here. The sarcoid symptoms started right after I came back from my son's US Marines graduation, I thought it was just a bad cold, feverish, and would wake up drenched in sweat. I went to the DR, got prescribed antibiotics. But I kept getting worse I felt so weak, fatigue, wheezing. Went back to the DR, and they did an xray. They told me I had been exposed to TB and they had to do a CT scan. After that the Dr told me I had to do an appointment to see my Oncologist. Once there he told me they were thinking the Hodgkins was back but he was going by what he had read on the CT report. He told me if the Hodgkins is back this is not good. He told me to wait until he took a look at the actual films, and he came back and said forget everything I told you, I think you have something else, it's called Sarcoidosis. The only way to know for sure if it was one or the other, was by doing a biopsy. Like always first biopsy a total fail, I woke up mid biopsy when the surgeon is cutting in my lung area. I was nice enough to stay calm with a tube down my throat, while he was cutting. ( not like I had a choice ). Results are back pathologists said he didn't have enough to write a report. Biopsy had to be done again. This time they were talking about opening my chest, I didn't want that. My doctor found me a very good surgeon that would do it less invasive. She did it going in between my esophagus and breast bone. Finally I knew for sure what was wrong. Doctor told me he wanted to hold off treatment because, it would cause problems with already diabetes 2. But then I got a rash on my face it kept going up on my cheeks until it reached my eyes. Right now I can barely see through my left eye. My eye doctor referred me to see a retina specialists after almost 1 yr of appts back and forth to both of them. He wanted me to see another eye doctor. This time I decided to take control and searched for some one that knows about Uveitis. I was able to get an appointment with Dr Foster, President and Founder, Ocular Immunology and Uveitis Foundation. My first appt will be Feb 18, I'm feeling very positive. About the same time I started having the Sarcoid symptoms I started seeing a Endocrinologist, and for a few yrs they would do needle biopsies on my thyroid and they would tell me everything was good as in negative. I was having this feeling of being choked, I would choke drinking liquids, taking my medications. I developed a cyst in my neck, it would drain on its own, once they drained it with a needle. They told me if it bothered me to much they would remove it. November 2014, had it removed also had made the decision to have thyroid removed nothing would change since I had been taking thyroid medication for many years now. Pathologist checked thyroid and it came back positive for cancer. Doctors say I'm ok now since it was removed, in the process some small glands I think that control the calcium levels were damaged. Now I'm dealing with facial twitching and tingling feeling if calcium gets low. My son finished his 4 yrs in the Marines in Sept 2015. He is back home, between him and his brother they take care of everything. It's so little what I'm able to do. I wish my body was as energetic and restless as my mind. I now days call myself a Holiday cook, those are the only times in which against all pains I cook for my boys. Even while I was going through chemotherapy and radiation, I got up on the boys birthdays and baked and decorated them a cake. That's something I promised myself, because those are the things they will always remember when I'm gone. Little by little I have been losing weight. I don't think about or do diets, what I do is Healthy Eating. Starting 2015 I weighed 270, now I'm down to 220. I did go through a whole year in a program for a Gastric sleeve, I met all the requirements, after 4hrs in surgery I was told when I woke up, it couldn't be done. I have to much internal scarring and adhesions and its dangerous. Also because of that they can't fix the hernias. As a woman it's very depressing remembering how I looked, to what I see now. Physically the illnesses have taken so much of me. I lost all my teeth because of the radiation. Since the chemotherapy I lost my eyebrows and eye lashes. Now days I keep myself occupied, loom knitting, Netflix, my son got me a sewing & embroidery machine. I love it, haven't used it yet. Sometimes I look at it and get sad, thinking I might be losing my eye sight. What I'm I going to be left with, spleen & gallbladder are gone also. Lol If only the extra weight would go away that fast. I have a nurse that comes to the house 3 times a week, that has helped me a lot. Well that's my life. Feel free to message me. ((( hugs ))) God bless M.O.M Mom of a Marine :)