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MandyL
United States
เข้าร่วมเมื่อ 9 ต.ค. 2011
My life before, during, and (hopefully) after chemotherapy for stage IV Hodgkins lymphoma
Schrodinger's: part 2 of 2 undiagnosed virus in the year of COviD-19 (summary below)
Linked resources for those interested in COviD-19 information:
docs.google.com/document/d/1goseE4TXhbQ2JfnF-W3VCg_iPTLwzA8G4-vhwiA2yX4/edit?usp=sharing
My Schrodinger's symptoms list below
Mask breathing problem incident:
vision blacking incident toward end of shift with dizziness and stuffed up feeling as if holding breath, lasted through evening after going home but have not had problems with mask wearing since
Initial possible symptoms:
mild cough/clearing throat, stabbing gut pain, increasing fatigue in evening and with exercise, single incident of eye pain for 15 minutes, hypoglycemic episodes, single incident of watery sinus drainage when bending forward
Main symptoms (4/27 - 5/27):
mild dry cough, mild fever, rapid and shallow breath, dizziness, chest discomfort/pressure/pain (especially lying on back, debilitating fatigue, transient tachycardia (132 bpm), chills, aches and pain (including jaw and elbow), swollen spleen (without and with pain), sore throat, throat inflammation, immobilization of suckling mechanism, throat constriction, inability to swallow, feeling of drowning/asphyxiation and being strangled, appetite loss, transient headache, dry and pale and sore tongue (burning mouth syndrome), Raynaud’s syndrome (alternately pale, grey, splotchy), poor skin appearance on back of hands, tingling followed by itchy skin, diarrhea (yellow and explosive), panic attacks, suicide ideation, increased ascending numbness in legs and arms, mental confusion/delirium, foot pain and swelling, red marks on insteps
and outside edge of feet, purple legs and increasing severity symptoms when showering, persistent dehydration, weight loss (water weight), rotting smell in sweat/on sheets/urine, loss of smell, hoarseness, skin rash, covid toes/chilblains? septic toes? (pinky toes only during active infection), sneezed out dirty brown old blood/phlegm?, coughing up watery phlegm (5/7 and after), waxy ear canals, transient tinnitus, transient red and burning palms, easily sunburned, crotch irritation (UTI?, probably not)
Recovery/post-viral syndrome symptoms (5/25):
regained appetite, disappearance and/or significant improvement of symptoms, sputum/phlegm, deconditioning (lowered cardiac ejection fraction), mild dyspnea, mild fatigue, chest pain/tightness (pleurisy, bronchoconstriction?), irregular resting heart rate, rashes (hives and cyst-like pox and covid/chilblains? toes and blisters), occasional diarrhea, occasional vomiting, dry and sore tongue, sensitive gums, ongoing throat issues/inflammation, possible strep infection with tonsil stones (trapped lymph fluid but negative strep test), crotch irritation and sensitivity, waking/walking/whatever with transient increased numbness in arms and legs, excess facial sweating, difficulty regulating body temperature, shivering, ongoing decreased sense of smell, some hair loss, persistent dehydration
Current ongoing concerns (October):
Light sensitivity, fatigue, occasional dyspnea, phlegmy, transient numbness in arms and legs, burning mouth syndrome, sore inflamed throat, occasional tight/painful chest, reduced sense of smell, transient diarrhea, irregular and higher than normal body temperature and resting heart rate are starting to approximate normal behavior, transient chills, slowly losing weight, slowly losing hair, sadness, anxiety, dry skin on hands, sore feet, persistent dehydration
Possible diagnoses proposed by doctors: pulmonary hypertension, COviD-19, anxiety, Raynaud's syndrome, RSV, unknown virus
docs.google.com/document/d/1goseE4TXhbQ2JfnF-W3VCg_iPTLwzA8G4-vhwiA2yX4/edit?usp=sharing
My Schrodinger's symptoms list below
Mask breathing problem incident:
vision blacking incident toward end of shift with dizziness and stuffed up feeling as if holding breath, lasted through evening after going home but have not had problems with mask wearing since
Initial possible symptoms:
mild cough/clearing throat, stabbing gut pain, increasing fatigue in evening and with exercise, single incident of eye pain for 15 minutes, hypoglycemic episodes, single incident of watery sinus drainage when bending forward
Main symptoms (4/27 - 5/27):
mild dry cough, mild fever, rapid and shallow breath, dizziness, chest discomfort/pressure/pain (especially lying on back, debilitating fatigue, transient tachycardia (132 bpm), chills, aches and pain (including jaw and elbow), swollen spleen (without and with pain), sore throat, throat inflammation, immobilization of suckling mechanism, throat constriction, inability to swallow, feeling of drowning/asphyxiation and being strangled, appetite loss, transient headache, dry and pale and sore tongue (burning mouth syndrome), Raynaud’s syndrome (alternately pale, grey, splotchy), poor skin appearance on back of hands, tingling followed by itchy skin, diarrhea (yellow and explosive), panic attacks, suicide ideation, increased ascending numbness in legs and arms, mental confusion/delirium, foot pain and swelling, red marks on insteps
and outside edge of feet, purple legs and increasing severity symptoms when showering, persistent dehydration, weight loss (water weight), rotting smell in sweat/on sheets/urine, loss of smell, hoarseness, skin rash, covid toes/chilblains? septic toes? (pinky toes only during active infection), sneezed out dirty brown old blood/phlegm?, coughing up watery phlegm (5/7 and after), waxy ear canals, transient tinnitus, transient red and burning palms, easily sunburned, crotch irritation (UTI?, probably not)
Recovery/post-viral syndrome symptoms (5/25):
regained appetite, disappearance and/or significant improvement of symptoms, sputum/phlegm, deconditioning (lowered cardiac ejection fraction), mild dyspnea, mild fatigue, chest pain/tightness (pleurisy, bronchoconstriction?), irregular resting heart rate, rashes (hives and cyst-like pox and covid/chilblains? toes and blisters), occasional diarrhea, occasional vomiting, dry and sore tongue, sensitive gums, ongoing throat issues/inflammation, possible strep infection with tonsil stones (trapped lymph fluid but negative strep test), crotch irritation and sensitivity, waking/walking/whatever with transient increased numbness in arms and legs, excess facial sweating, difficulty regulating body temperature, shivering, ongoing decreased sense of smell, some hair loss, persistent dehydration
Current ongoing concerns (October):
Light sensitivity, fatigue, occasional dyspnea, phlegmy, transient numbness in arms and legs, burning mouth syndrome, sore inflamed throat, occasional tight/painful chest, reduced sense of smell, transient diarrhea, irregular and higher than normal body temperature and resting heart rate are starting to approximate normal behavior, transient chills, slowly losing weight, slowly losing hair, sadness, anxiety, dry skin on hands, sore feet, persistent dehydration
Possible diagnoses proposed by doctors: pulmonary hypertension, COviD-19, anxiety, Raynaud's syndrome, RSV, unknown virus
มุมมอง: 412
วีดีโอ
Schrodinger's part 1: undiagnosed illness
มุมมอง 574 ปีที่แล้ว
"Schrodinger" refers to the state of both knowing I was sick and medical testing without finding a reason and going undiagnosed for eight years. At my lowest point, I turned down an essential snake oil sales person only to have her invade my home to insist on expensive quack treatment. My high point was finally getting a diagnosis and appropriate treatment. I intended to make this video back in...
COviD-19: false negative? Day 15
มุมมอง 1074 ปีที่แล้ว
It's 4 years and 5 months out from chemo when I lose my sense of smell after regaining it.
Pachima Solo
มุมมอง 2016 ปีที่แล้ว
Middle Eastern dance class improvised solo to PACHIMA by Baltan Beat Box
DCIS breast cancer: healing mastectomy incision
มุมมอง 27K8 ปีที่แล้ว
How long does it take before I get to remove the surgical glue?
DCIS: emptying JP drain
มุมมอง 3708 ปีที่แล้ว
This video contains visuals of post-mastectomy surgical areas for educational purposes, including skin in the process of healing, stitching, surgical tubing with drain, scabbing, bruising, and small amounts of bodily fluid.
DCIS: breast cancer surgery was a success
มุมมอง 1.8K8 ปีที่แล้ว
DCIS: breast cancer surgery was a success
CHEMO: the cost of cancer
มุมมอง 7458 ปีที่แล้ว
How much does cancer and chemotherapy cost? Everyone is different, but these are my totals up until now (just finished six months of ABVD chemotherapy).
CHEMO: how to live healthy
มุมมอง 488 ปีที่แล้ว
Tips on ways to prevent cancer and live a healthy life - also, check out more about chemo at my favorite chemotherapy website chemocare.com (recommended to me by my doctor)
CHEMO: 4 ways friends & family can help
มุมมอง 1338 ปีที่แล้ว
Tips on ways you can help somebody going through chemotherapy
CHEMO: Hodgkin's treatment 2 of 2
มุมมอง 1718 ปีที่แล้ว
My experience with side effects of ABVD, minus a couple like insomnia, ear canal and urethra and vaginal and anal irritation, glossing over the pain, probably others - still alive, though
CHEMO: Hodgkin's treatment 1 of 2
มุมมอง 2088 ปีที่แล้ว
Overview and history of treatments for Hodgkin's lymphoma
CHEMO: Managing ABVD Side Effects & Medications
มุมมอง 9498 ปีที่แล้ว
I review techniques to manage medications and side effects of ABVD. I also list my med.s.
CHEMO: nutrition
มุมมอง 2858 ปีที่แล้ว
Stay healthy: hydrate, eat protein, and exercise. P.S. Blended chickpeas with flavor is hummus.
♥️🙏♥️🙏♥️🙏♥️
Can we hear an update on how you’re doing
I have improved greatly, but I am still dealing with a variety of symptoms and have to pace myself throughout the day.
Mine too, Dec 19 through to sept Oct 20, still having bouts of muscle aches, headaches, dizziness,stomach upset and fatigue. The pandemic didn’t start till march so didn’t get tested. Doctors thought I was mad.
It's been very difficult to deal with. My best wishes for your recovery. I am hoping that doctors are finally getting up to speed on what many of us are experiencing. I've been meeting several people in online groups who have the same experiences we have had this year, and our experiences have shown gaps in the healthcare system which need to be attended to. Thank you for sharing.
Your story is a lot like mine 😔
Thanks for making these videos.
You are welcome. When I made them, there was very little information available to me about what I was going through. I'm happy to see there's more out there these days.
Stay brave😁😁
Thanks. It's been almost three years, and I'm working on adjusting to the new normal.
@@mandyl9852Hope you are in good health and spirits!
Thank you!
Forgive me, I’m a man, you didn’t look to concerned about your surgery, and proud to she your scars on UT, do you not feel humiliated after such extreme surgery please?.
My videos are made to provide others with information about my experience. This is particularly important to people who will be going through partial or full mastectomy surgery or those who know someone dealing with a similar situation. Providing information about the appearance of scars during healing helps people to understand the process. I had no idea about what to anticipate going into this process. The surgical team provided very little information on what would happen, and I did not know enough to ask the questions for the answers I found myself wanting later. I am proud of my scar - it shows that I am a survivor. I have no reason to feel humiliation. If I could flaunt it on the regular, I might consider that. It is a physical demonstration that I can do difficult things, that the human body is capable of amazing healing, and of the advancements of modern medicine in helping cancer patients. However, I am sensible that there are others who may feel differently.
Thank you. You are a real inspiration. I loved your solo dance too!
Than you.
Awesome!
How does it feel not have not sensibility there, do you feel less feminine with one breast?. As a man, can never understand how it feels as a women to allow even a double mastectomy without reconstruction?.
Chemo was a much more significant challenge than the mastectomy. I'm missing skin sensation from the surgery, but I am also missing nerve sensation due to chemo-caused neuropathy in my fingers, toes, and scalpl. I also get random bursts of pain because of it. A little of the nerve sensation has come back over the last couple of years - it's a little like having a leg "go to sleep" but without the tingling pins and needles sensation. Breasts are not particularly sensitive in the first place (yes, nipples, but not breasts in general), so the removal is mostly an aberation and inconvenience. I get worried about injury or infection in the area because of the numbness. I feel like my body has been mutilated but not that I'm less feminine. But, having talked with other women, this is not always the case. I don't know that it's the mastectomies, though. Chemo is very isolating and challenging. Some people can pick up where they left off afterward - they are the few. Some people go through radical personality and belief changes due to the process as well. The rest of us are somewhere in the middle of that. It's messy. Reconstruction from breast cancer has varying results, but they are never like the real thing. Realistic nipples and nipple sensation are basically a surgical impossibility. The best results I've seen are done with tattoos. After looking into it, reconstruction was not a good option for me. I'm allergic to silicone and I do athletics and other physically demanding activities. Implants are all made of silicone. Implant placement can cause nerve damage and movement restriction. Autologous reconstructions can take years of sequential surgeries. I know a lady with double reconstruction who still questions her decision to go through the surgeries involved, and I suppose there may come a time when I question mine. But that time isn't now.
Have u felt any pain at all? I just hit 4 weeks of my surgery and am now starting to feel pain. Do u have that? Did u have physical therapy or message therapy after?
I am a Latvian of course I'm interested in anything (good) that can help with my current situation.
I am a Latvian trust me I understand. Ivventura@yahoo.com
I am a Latvian ok.
I've been dealing with chronic pain since I was fifteen. I was diagnosed with very late stage cancer. The pain included difficulty breathing - frequent coughing wheezing fits, pain throughout all my joints, etc. Chemotherapy helped with some of the pains and made others worse. I have permanent neuropathy which also causes pain, sometimes unexpectedly it just shoots through the nerves - SO, take everything I say with a grain of salt from here on out because I'm not sure which pain is from where. After surgery, there was pain with the swelling and scar tissue. I had to use a device to learn to breathe again as well. My arm atrophied a little bit because of post-surgery stuff. I started to do physical therapy exercises after that to regain mobilization. I've heard some people struggle with the exercises because of the pain and give up on them. I have trained in a couple of different sports, so I had experience judging on whether to lean into the pain or back off. Regaining and maintaining mobility was very important to me, and it is still somewhat painful - sometimes I get the shooting pains with tingling numb aching from fingertip, across the chest, and down to the heel when I exercise, and then it takes time for that to heal. Since I'm involved in sports, I keep at it, but it's tolerable although somewhat problematic. So, in short, I'd recommend physical therapy. I wouldn't do massage unless you've got somebody with the extra training to deal with surgical issues - they could do damage if they don't know what they're doing. Best wishes to you with your recovery.
Thank you for the info & God bless
Hope things improve for you!
Loved the guitar
Thank you. I am working on it.
Brave woman
Thank you, but I'm just a person - bravery and cowardice, all in the same person.
I've enjoyed your blogs. Your guitar song was sweet and brought back a memory where that song was played as a duet between a cello and a computer. Thought I'd share it with you. th-cam.com/video/fc8yjOrGUhQ/w-d-xo.html
Thank you. That's a fun video.
May God be with you
Thank you. God be with you as well.
God bless, hope you're still well
There are ups and downs, but I'm doing pretty well - the surgery healed up well and with self-therapy exercises, I have full use of my arm again. There is occasional discomfort, but the present is a good place for me.
Thank you for sharing!i had stage 4 as well, nodular sclerosing, massive golfball size tumors everywhere. I was also dealing with lower back pan due to a tumor pressing on a nerve, painkillers didn't touch it. I also suffered from most of the side effects, you listed in addition to bleomycin toxicity, resulting in fibrosis of the lungs--they made a major -mistake last chemo( they gave me too much bleo)I had a horrible, experience with my Oncologist at a world renowned medical center; UCSF. It was ROUGH! They even did a bone marrow and bone biopsy with no local or pain killers, not even lidocain! I was screaming, so painful. IN addition close family thought the treatment would be light because Hodgkins is in many ways considered curable. I am much better now. but it was just awful. I do hope you are done with your cycles and are in a CR!
It's difficult for anyone who doesn't go through chemo to understand what it really does and the toll it takes on a person's life. I'm currently in recovery and trying to move forward with my life, but I hit a bump with my DCIS diagnosis and mastectomy. It sucks that they didn't use any painkillers for the biopsy - if we've got access to modern medicine, we should be able to benefit from it's use. I am glad you are doing better. I'm still fighting the fear that it will come back or that I'll be diagnosed with another cancer - stage IV, bleh. Good luck to you as well.
That's the challenge isn't it? To live each day to the fullest with the unknown of when and if a recurrence will occur. Transcending this state and owning i, so it doesn't own you, cancer can't take that from you. *totally agree on the chemo.
Thank you for putting this information out. Women need videos like yours from other women who have the courage to share. It seems that some doctors are contemplating paring down treatments: "When less is more: Paring Down Treatment for Hodgkin Lymphoma May Reduce The Risk of Long Term Side Effects" Wishing you the best.
Thank you. I was diagnosed with Stage IVB Hodgkin's Lymphoma. It took a combination of various doctors a long time to figure out what was going on - for a long time all my medical test results came back normal and some tests resulted in false positives. My oncologist was surprised when I got my DCIS diagnosis, but she was also the one encouraging me to get the medical tests I'd been putting off because of chemo. I count myself fortunate to have caught the breast cancer early.