Welcome to this CaringBridge website. It is created to help me journal and record my journey as well as keep friends and family updated since I have not traveled this road alone. Please click on "JOURNAL" and visit again to read the latest entries, photo gallery, and if you desire you can leave a note. Writing really helps me to put things in perspective. It also helps me grow.
July 2021 Lymphoma
Since Fall of 2020 until now, I have been hospitalized for Sepsis 6x and recent kidney infection. My platelets continued to drop. In late May I was dx with Lymphoma stage 4 because it is in my bone marrow. It was slow growing. I’ve been responding well to treatments.
When I was diagnosed about 15 years ago after being lifeflighted from Williamsport to Hershey. They did an open lung biopsy that was a very hard surgery to recovery from. They can now go down your throat and into your lungs to get lung tissue, whereas years ago, they needed to use chest tubes and go in through the side of your chest. Hershey sent my pathology two two other schools of medicine, Harvard and John Hopkins, to come to a conclusion. The majority of my involvement was with primarily affection my lungs and heart, but they were trying to discover why it also at a cell level systemically was causing overall fatigue, weakness and an inflammatory and autoimmune response. How this has been explained to me over the years is that a healthy immune system has no trouble telling the difference between its own cells and those that are invading. Autoimmune diseases attack the body by mistake, invading it with unhealthy pathogens. So with Sarcoidosis and other diseases, there is an unhealthy immune system that thinks the organs, skin, joints and even the central nervous system is a foreign intruder and attacks the cells that would normally protect the body from virus and bacteria. It’s like instead of helping the body heal, there is a battalion of cells that wipe out the good cells. In order to try to stop this response, chemo drugs and steroids are used to slow down this process, but sometimes it lowers the white blood cells and have side effects that are part of immunotherapy. Often when immune suppression is stopped for some illnesses (usually when in remission) the body can resume and function correctly.
Like cancer, Sarcoidosis creates granulomas or lumps and bumps, yet unlike cancer, those growth are not malignant but because they are in great number in advanced disease they mess with how a healthy body works. So treatment can be similar but those with autoimmune diseases seek treatment of immunotherapy often for a lifelong. They can taper during better periods but flares can come out of nowhere and affect everyday function, or begin a new course. Malignancy can spread, but with autoimmune conditions like Sarcoidosis, Multiple Sclerosis, Psoriasis, Crohn’s, Sjogren’s and all the 100 or more conditions . Often when someone has advanced organ symptoms, they can fall under more than one disease list. For me I do have multiple conditions that affect me. I call this autoimmune soup, because it’s all mixed up as my condition has advanced. The technical term is Poly (multiple)...Polyneuropathy, polyarthalgia, polymyositis. Poly means many or multiple areas so many nerves (small fiber nerves), many joints and many muscles. https://my.clevelandclinic.org/health/diseases/11863-sarcoidosis-overviewhttps://www.aarda.org/diseaselist/
For me it began in my lungs, then a few years later my lymph nodes and central nervous system. I also had it with skin and my kidneys and neurogenic bladder are where I have struggled.with spasms, numerous kidney stone surgeries and my eyes have been affected more by Sjögren syndrome it seems...more of auto_immune soup with many symptoms. My doctors at Hershey focused more on the neurosarcoid, but after they released me to hospice, I learned after a year that God was going to give me more time.
Recently I felt I was making some progress after this 12 year battle, . Then when I came off of pain medicine, Methodone slowing last year, I started having changes with my heart and my doctors said perhaps the medicine was masking some of my sensations or symptoms . My family doctor even sent me to the ER by ambulance recently when I arrived for my appt, the nurse took my heartrate, pulse and checked if my O2 was correct. They can usually get it down with fluids but I also get confused and have burning sensation and skin gets very warm to touch. I’ve had heart problems in past but my doctors feel it is more from my lungs. I’ve had several congestive heart failures and pericarditis and a heart virus:endocarditis. I had a period of progress last Fall and I attributed it to getting off some of those meds and with physical therapy I am learning to use the walker. My setbacks since the new year are hard to fight back each time though.
I saw a new Cardiologist and a fellow dr yesterday and they ordered quite a few tests and they mentioned cardiac sarcoidosis. They also said that it may just be palpitations that may need medication or inappropriate sinus tachycardia. They did see changes in my heart within the past 4 months when it put me in the hospital or ER. I’m hoping there is a simple explanation .
I am trying not to worry and rely on the faith that things may unfold as related to another problem. How are we suppose to keep fighting when it feels like the odds can be against.
As a single mom of 4 special needs adopted adults who live with me. 3 of them, siblings,were diagnosed with Myotonic Muscular Dystrophy in the past few years. It has an adult onset. They began being dx in late teens and are all in 20’s. They are amazing and sometimes I see how much more horrible this disease is for them. My oldest recently had a pacemaker deflibulator placed and I had her sleep in a recliner by me or with me because it was the only way I could care for her initially. I’m so scared they will lose more strength and I won’t be able to care for them. God has miraculously kept us together and I want to be there for them, like they have helped me over the years and struggled through with me.
I do have attendant care, aide, and nursing so that helps me but this setback with breathing and heart rate is difficult to fight against.
Jan 2011. Please see JOURNAL to see where I am at on this journey at the present time. Four years ago (June 2007) I began a precarious journey with my health that has weakened my body but strengthened my faith. My lungs, muscles and lymph nodes is where I was first dx. with Sarcoidosis. I have also had heart related concerns as well. My spinal cord and brain are now where the disease has advanced. I am currently undergoing treatment for Neurosarcoidosis and neuro-muscular involvement affecting my central nervous system and motor function. The nature of this is a combination of nerve/ auto-immune diseases called Sarcoidosis (clustered immune cells forming in lungs and muscle fibers) and Myositis (body attacking many muscles). Because my lungs began to decline so rapidly it caused pulmonary fibroisis and interstitial lung disease and some heart related concerns. I have had pneumonia over a dozen times in the past few years and I have needed to be hospitalized too many times to count. I have been scared as I have been life-flighted and whisked away in screeching ambulances and have needed the help of different specialties and medical centers. My weakness profoundly affects my mobility. My muscles fatigue quickly. The muscles in my chest are also affected so breathing is very difficult and I currently use oxygen around the clock. I need higher levels at night or when sleeping. During more difficult flare-ups I have trouble swallowing, holding my head up, and controlling my neck muscles. I experience pain, tremors, spasm and muscles contracting. Another current health concern is the follow-up for two forms of thyroid cancer that were discovered in 2008. I have undergone surgery, tests and treatment. As a single mother of 4 teenagers with some special needs of their own, we have had to get help from others to overcome some difficult times of separation and crisis. One hospitalization lasted 10 weeks and this was so painfullly hard for the children and I. We recently moved closer to the hospital treating me and to be near family support.After numerous biopsies such as open lung, deep tissue muscle, lymph nodes and skin... my pathology has been sent to other hospitals and they have begun developing more of a treatment plan rather than treating it blindly. I have been treated with high doses of immune suppression and steroids. I made some remarkable progress, but then had the disease return with more complexities and complications. Because some of the medications used to try to stabalize are immunosuppressants they work against my ability to fight infection so I have battled back to back infections and I have to take extra precautions. I need to conserve my energy for daily living. So far my declines have been of a progressive nature but I continue to hope that with treatment I can improve. Because this disease is symptomatic, chronic and a limiting process, I am thankful that I have help to still fight the good fight and that I can continue to navigate the storms and embrace life to it's fullest. At the end of each day I have been able to look back and see God's help and faithfulness. He is choosing to sustain me and I sense His intervention and hand in healing. My life has been enriched with so many meaningful relationships and experiences. http://www.royalfree.nhs.uk/neuro.aspx?top_nav_id=1&tab_id=795http://www.facesofsarcoidosis.org/Home.html
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