Endometrial Cancer

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    Community Voices

    CURING HUMANITY

    <p>CURING HUMANITY</p>
    CynthiaHayes

    The Art of Letting Go When You Have Cancer

    I was diagnosed with endometrial cancer in September 2015. The news came out of nowhere — I had no symptoms, no family history, just a funky pap smear. I made it through surgery and six months of chemo feeling isolated, scared and overwhelmed, before realizing that I was not alone, that much of what I experienced is typical for cancer patients, and that I had so much to give by sharing. So I volunteer with patients, helping to comfort them through the treatment experience. And I write and try to spread the word that cancer is an emotional diagnosis along with a physical one. Once, when I wandered into the chemo suite at Mount Sinai Cancer Center where (in pre-COVID days), I volunteer once a week, Marika was working with a patient, saying, “You just have to let it go.” It sounded so profound, but this wasn’t some deep psychological conversation I was interrupting, this was a lesson in watercolor painting. Marika comes to the chemo suite a couple of times a week with various arts and crafts projects to help those receiving treatment pass the time. There are beads to be strung and origami to fold, but the most popular pastime is watercolor painting. As I watched, she demonstrated the technique to Zoraida, who was awaiting her infusion. First, she wet the area to be colored. Next, she dipped the brush into a deep magenta and just tapped the brush to release a drop of color on the wet surface. The paint spread within the dampened area, flowing in unexpected ways, leaving some parts saturated with the deep pink, infusing others with a translucent glaze. As she layered on a second color, some areas turned to a brilliant purple, others, overlapping with yellow already on the page, turned muddy and deep. It seemed like the perfect metaphor for being a cancer patient. There is so much we can’t control — the cancer we have, the treatment, the timing, how our bodies will respond — but, we can wet the paper and choose the color, be it ice blue or golden yellow. Sometimes we muddy the waters, sometimes we find surprising beauty and grace. Zoraida knows a little about letting go of control. Not just because of her participation in Marika’s art projects, but because she’s had plenty of opportunity to practice. For more than a year she’s been receiving treatment for her current diagnosis, a recurrence, with cancer in her ovary, colon and appendix. She desperately wants to be done with treatment. She wants to focus on her garden and taking care of others in her community, and most of all, she wants to visit her family in Florida and her home in Puerto Rico to soak in the warmth. But every time she asks her doctor if she can take a few weeks off to travel, the answer is, “Let’s give it a little more time.” While she waits, she’s become a better artist, and a more resilient patient. “I know I’ll get there,” she says. “I feel good, it’s bound to happen.” So, she takes her finished paintings back to her apartment complex in Brooklyn and shares what she’s learned with the kids and housebound elderly in her building. But she has more to share than watercolor skills. Many of us have a hard time letting go of control. It’s just one of numerous insults the diagnosis brings. Having worked for myself for 30 years and raised a family and managed a household, I knew a little bit about control. My life was always tightly scheduled, the days, weeks, months planned out in advance. While I struggled with the existential questions raised by my uterine cancer, I found the need to relinquish control equally challenging. How would I feel on the day of and days after treatment? When would I begin to feel like myself again? Would I be able to receive treatment as scheduled or would delays creep in as my body failed to bounce back? When would I lose my hair and when would it grow back? When would I start to feel like myself again and when could I put this whole ordeal behind me? I couldn’t plan even one day in advance, and life was totally out of control. Now, five years after diagnosis, my doctor tells me there is no evidence of disease, and I no longer feel the same urge to control the uncontrollable. Friend running late for lunch? I’ll have a cup of coffee and catch up on my email. Traffic moving too slowly? I’ll just find some good music to listen to while I wait. Too many items on the To Do list to get done this week? I’ll reprioritize. That doesn’t mean I don’t make plans. And I certainly haven’t changed my list-making habit. But I’ve learned a little about letting go. I recognize when my paper is wet, when I have to just let it flow. And most days, I’m ready to dab on a little color and see what happens. (Note: Art programs at Mount Sinai are provided by The Creative Center, which gives free art programs to patients with cancer and chronic disease in all stages of recovery. In addition to programs on-site at more than 30 medical facilities, it offers free workshops at locations throughout New York City. To learn more and to enroll, go to The Creative Center).

    Community Voices

    Mind over health

    I'm 34 I was diagnosed with beginning stages of endometrial cancer in my 20s . I did what I was supposed took my megace , and actually my last hyteroscopy / d&c in 2019 I was clear no evidence of cancer. Well 2020 I knew something was wrong the pain was constant , my periods were off, and I just knew to call my oncologist .
    Dr says I don't want you to schedule an appointment just schedule a surgery so we can take some biopsies. Let me say this again I knew
    Doc gives me a call and tells me I had a reoccurance its back it spread and is worse then it ever was . I listened to my options: keep taking the meds so we can have a baby and jeopardize my chances of it getting worse or have a hysterectomy. Husband said what options there isn't any . Forget about trying to have a baby hysterectomy it is, your life is more important.

    I honestly beat myself up and was so upset! Lied to my friends and family saying I'm perfectly fine with the decision, but in all actuality I wasn't ok and I'm still not ok . Knowing we've been pregnant previously, taking all the meds for 7 yrs , going under so many times, and it was all for nothing! For me just to be told that my life is on the line, and no babies. Everyone says you can adopt , I get it yes I can , however I will never be able to feel a baby kick , listen to a heart beat, or have an amazing bond with a child in my womb . What womb !!! I don't have one 😶. Its officially gone my options are over. I still feel empty and it's only been 3 weeks post my hysterectomy.

    I don't feel complete anymore, and honestly I don't know if I ever will . I know I sound completely selfish right now. I honestly so needed to get this off of my chest . Sorry
    .

    1 person is talking about this
    Community Voices

    Getting to Know You

    5 years ago, I was diagnosed with endometrial cancer. I was scared, anxious, sure I would die from this aggressive disease and feeling isolated and alone with my emotions. After surgery and 6 months of chemo, my doctors declared there was no evidence of disease and it was time to go back to living my life. But the process of recovery was far from easy. And the more I talked to other cancer patients the more I realized I was not alone. Turns out, for most of us, cancer is a big ordeal.
    #Cancer
    #MentalHealth
    #Emotions

    5 people are talking about this
    Community Voices

    Getting to Know You

    5 years ago, I was diagnosed with endometrial cancer. I was scared, anxious, sure I would die from this aggressive disease and feeling isolated and alone with my emotions. After surgery and 6 months of chemo, my doctors declared there was no evidence of disease and it was time to go back to living my life. But the process of recovery was far from easy. And the more I talked to other cancer patients the more I realized I was not alone. Turns out, cancer is a big ordeal for lots of us.
    #Cancer # Emotions #MentalHealth

    Community Voices

    I'm new to the community

    Hi, all. I'm new. It told me to let everyone know I'm new and who I am, but I can't find the area to do so. So, I'm just posting then. I , um, hmm, not sure what to say. I have been "frail" by government standards since I was 14. It all started when I woke up one day and was covered from head to toe in a weird rash. It turned out to be psoriasis. I had treatment for weeks before it slowly began to go away and then it went away except for my scalp and knuckles which I still fight to this day. Then my musculoskeletal system began to fight against me. I would fall for no reason, drop things, etc... I had to go to Physical Therapy for a long time. Then I started taking medicine. 14 pills a day (now I take about 30 pills a day). In my 20's, my back began to fail me. They called it disk degenerative disorder. I had a herniated disk and my lower back was crumbling, I had spurs up my entire spine, and cervical stenosis. I also lost 3 babies, which was devastating. In my 30's, I lost two more. When I lost the last one, I was informed that I had endometrial cancer. I fought it, and it went away only to come back in six months so I fought it again and it went away only to be discovered that it was coming from cervical cancer so I had a total hysterectomy and lost my chance to ever have a child which put me into a downward spiral of depression. Then they discovered a small patch of skin cancer and removed that. Then I ended up with thyroid cancer and with some surgery and radiation, was able to get rid of that, This year will be my five year if I come out clean. Only they did a fibroscan of my liver (I'm stage 2 fibrosis NASH) and found severe liver damage and want to do a biopsy because they fear liver cancer. And on top of that, I've had some heart issues here and there (just little valve problems and angina) and they seem to suggest that a part of my heart is not getting oxygen so they want to do a cath, but I've been having uncontrolled seizures and they won't do it until I get a neurologist and he/she okays the cath. Anyway, I'm disabled. I travel by wheelchair = manual and electric - and I'm mostly in bed. When I graduated college, I was able to teach college (English Composition) for 8 years and those were some of the happiest days of my life. When I was doing my Bachelor's in college, it was in theatre and my truly happiest moments were being up on stage and acting. I don't know why I'm blabbing, I'm so sorry. I just never had somewhere where people might understand. I probably just signed my ignore warrant. Thanks for letting me in.

    6 people are talking about this
    Community Voices

    Worried I will die without accomplish anything

    I am 57 and have had serious health problems all my life. I have always been very health conscious, and yet I've had breast cancer, had endometrial cancer, have severe endocrine problems, and several of my internal organs are starting to fail.

    I was never able to have children, and was never able to get a carrier established. I have done a lot of scientific and nonfiction writing, but have not been able to get much of it published.

    After a recent hospitalization for acute renal failure, I worry that I don't have much time left. I want to find some way to make my remaining time meaningful.

    The idea of dying after a meaningless life full of suffering bothers me much more than the thought that I am running out of time -- I really don't want more time if it will just mean more suffering, no ability to do the things I want, and nothing accomplished.

    I am looking for people in similar situations to talk to -- I really don't know anyone else in this situation. My cancer problems are now under control, and I haven't found support groups for people with my other problems. Please help me connect with others facing similar things!
    #endoflife #lackofmeaning #findinghope #findingmeaning

    5 people are talking about this
    Community Voices

    I have had two cancers in four years. I might get more.

    Four years ago, I was diagnosed with endometrial cancer. I was 36. I’m 40 now. I remember the shock I felt. My gynecologist had just told me a week before she didn’t think it was possible I had endometrial cancer, after all, “I was too young.”

    About four weeks later, I was having a complete hysterectomy that later revealed that my cancer had spread into my cervix, my fallopian tubes, into one ovary, and into my lymphatic tissue. I did three sessions of chemotherapy, then 28 external pelvic radiations and then three more sessions of chemotherapy. I finished treatment March 2016. Now, almost four years post finishing my treatment, things are still great. My last checkup I was told everything looked healthy and good.

    Me shortly after going bald for the first time. Do you see the relief in my face?

    Shortly after treatment ended, I was talked into genetic testing by the physicians assistant for my oncologist. “Don’t you want to figure out why you got cancer?” she said. Reluctantly, I agreed. I thought for sure it would come back negative.

    “Good news! You are not BRCA positive. But you do have Cowden’s Syndrome.”

    Cowden’s Syndrome is also called PTEN Hamartoma Syndrome. It is a mutation of the PTEN gene. The PTEN gene is your tumor inhibitor gene. It causes multiple benign tumors (called hamartomas) all over your body, an enlarged head, goiters in the thyroid, skin tags, and puts you more at risk for certain cancer, like breast, endometrial, colon, rectal, thyroid, and melanoma.

    It was like so many things regarding my medical history that I had wondered about for ages finally made sense. My big head could be explained. The goiter I’ve had for almost twenty years, lodged firmly in my thyroid, explained. The weird bumps and skin tags that never seemed to go away, despite my best efforts? Explained. I was no longer a mystery, things made sense.

    They went through the list of cancer I was at the most risk for. Endometrial was at the top of the list. Next was breast. I was advised I had a 77 percent chance I would have breast cancer before I was 70. Then thyroid, colon, and skin. I asked what all this meant, and they said that I would have to be tested every year. Breasts would be tested twice a year. I would have to rotate every six months between a MRI and a mammogram. I would need to start annual colonoscopies. I would need to see a dermatologist for skin checks.

    I began the annual testing. My life began feeling like I was just waiting for the moment where I would be told I would have to repeat the hardest nine months I’ve ever had to go through. It took me at least two years (two rounds of tests) before I finally accepted that this was just something I was going to have to deal with. This is my new normal. Living, working, breathing — but also doing everything I can to make sure that if cancer wants to pay another visit, it doesn’t stay for long.

    Fast forward to May of 2019. I had been putting off my mammogram/MRI cycle. I had no symptoms to indicate that I had an issue, so instead of going and just getting it over with, I waited. Finally, upon the insistence of my Mother, I went. I thought for sure this would be like the others, that I could go, get my boobs squished, and leave.

    Well, you know what they say about assumptions.

    I was diagnosed with DCIS, or DCIS, early June of 2019. DCIS is an early, non invasive form of breast cancer. Typically DCIS, depending on the stage and grade, requires either a lumpectomy along with radiation or for those that wish it, a mastectomy for treatment. No chemotherapy.

    Now, the thought of radiation again, even on a different body part, made me nauseous. The thought of having a lumpectomy and then potentially, needing to do this all over again with a recurrence made me feel even worse. If I was going to do this, then I was going to go for the most aggressive treatment option. I was going to do this and decrease my chance of recurrence down as low as possible.

    I decided on a bilateral mastectomy, along with sentinel lymph node biopsy. My surgery was seven weeks ago today, on August 7th.

    Now, I’m a fat woman. I had big boobs. I didn’t like them. They sagged. They were in the way. I thought losing them would be fine, because the most important part was that I do everything possible to make sure I did not have to repeat this process again later.

    I remember the first time I looked at my chest after the surgery. I cried. I cried because my boobs had been replaced by a mess of bruising, swelling, staples and drains. It took me a good month before I could shower without crying because I couldn’t stand how I looked. Today, the swelling is mostly gone, the drains and staples took a hike weeks ago, and I am still adjusting to my new body shape. Reconstruction was not an option because my surgeon does not do reconstruction with mastectomies, so I went into this knowing I would be “flat” for awhile, if not permanently.

    Me after getting my drains and staples removed.

    I am back to work post surgery. My risk of recurrence for breast cancer has gone down to less than one percent, so body issues aside, I made the right choice for me regarding my treatment. I go to physical therapy once a week to work on getting my range of motion back to where it was pre-surgery, and it improves every day. I am trying to get back to a place where I feel reasonably okay with how I look. Some days are better than others, but I’ll get there. I beat two cancer in four years, and let me say this here so I can come back to this when I am feeling low — I beat two cancer in four years, so I can do anything.

    My annual Cowden’s Syndrome tests have started, and unfortunately I’ll be going for a biopsy for my thyroid in about two weeks. Three of the nodules in my goiter that I have had for about twenty years now are growing per the ultrasound I had two weeks ago, and my endocrinologist and I both feel a more aggressive approach in monitoring them is needed. So yes, I’m still trying to shut the door on one cancer only to have the possibility of needing to open another door. I am nervous for the possibility, but am choosing to cross that bridge when I get to it.

    Right now I’m just a Kathi who is trying to find her place in a post cancer world while hoping I don’t have to go back to the having cancer world.

    Bruce Ballard

    How to Cope With an Injury When You Have Parkinson's Disease

    You’d think that once you’re stricken with a devastating illness like Parkinson’s, you’d get a free pass on other medical calamities. But that’s not how life works. Fellow blogger Allison Smith (The Perky Parkie) has had to deal with Parkinson’s as well as colon cancer. Sheryl Jedlinski, another fellow blogger (Living Well With Parkinson’s Disease), not only has PD but underwent two knee replacements, followed by surgery and 18 chemo treatments for stage 4 endometrial cancer that had spread beyond her uterus. In light of their experiences, I feel lucky that my second medical condition, while it sounds gruesome, is relatively… well, I was about to say “is relatively a walk in the park,” but in fact, I can’t walk at all. Over the summer, I injured the Achilles tendon on my left foot; eventually, it tore entirely free from the bone. About two weeks ago, a surgeon sliced open the back of my ankle, reached in and grabbed the end of the tendon, pulled it back down to where it belongs and screwed it directly into the bone. Now I have to stay entirely off that foot for about six weeks. No walking allowed. Here’s my foot about two weeks after the operation when the doctor removed the cast and the staples and stuck bandages over the wound. Now I wear the clunky black boot that you see in the screen’s top photo. I keep it on even when I sleep at night. To get around at home, I crawl on my hands and knees. When I’m at work, I use a wheelchair, and someone needs to help me get in and out of the car. No walking allowed! (I learned empirically what “no walking allowed” meant when I absent-mindedly put all my weight on my left foot as I was climbing into bed.  A searing pain shot up my leg like a lightning bolt. Ouch!) So… Why am I writing about this? Because I see it as a conceptual metaphor for having Parkinson’s disease. My torn Achilles tendon is an unexpected medical condition that puts me at a fork in the road, meaning I can choose how I’ll respond to it. If I were to choose the grumpy route, what would infuriate me? Let the bullets fly: My injury has caused me to experience Parkinson’s symptoms that I never had before. For example, I can’t turn over in bed at night while wearing that bulky boot. Similarly, when the hospital’s physical therapist tried to teach me to use crutches, I became dizzy and kept falling to one side or the other. The therapist and her assistant kept catching me as I fell. The same happened when I tried to use the crutches at home: my husband needed to stand next to me and pull me upright whenever I lost my balance. I never fell with Parkinson’s disease before this. I had good balance up until now. Falling is such a downer! For the first few days after the operation, my foot hurt a lot, yet the powerful drug the doctor gave me provided no relief. I had to withdraw from competing in the world’s first table tennis tournament for Parkies: 60 ping pong enthusiasts (including a former Olympian) from a dozen countries converged at a large table-tennis hall near my house last weekend and duked it out in doubles and singles matches. Talk about drama, fun and excitement! I really wanted to do this! Damn! It hurts when I have to crawl on my hands and knees at home. I don’t understand how babies manage it! My knees are scratched and scabby from crawling on the carpet, and it’s just plain painful to crawl on the tiled floor in the bathroom. I can’t go to the gym to exercise, nor can I swim laps in the town pool. I miss my workouts! They’re what keep me sane! But enough with the downers. Let’s choose another route. Can we view my foot operation and recovery as an unusual life experience with a set of challenges that I would never have imagined otherwise? Let’s see… When I leave home to go to work, I have to descend a flight of stairs on our front stoop. I could sit on my bottom and work my way down step by step, but this isn’t practical if I’m wearing work clothes, nor is it dignified(!). So what do I do? I hold myself up with my hands on opposite railings and work my way down by landing on each step with my right foot. This is an enjoyable physical challenge for me — a little scary because the two railings are so far apart, but also a thrill. When I look at the bottom half of my body in the picture below, I imagine that I’m levitating. Here’s a situation that might exasperate some people, but I found amusing. My husband and I recently ate in a restaurant, and at one point, I needed to use the toilet. The restaurant had a large handicapped-accessible restroom. I wheeled myself up to the toilet, grabbed one of the silver handrails on the wall with my right hand, stood up on my good foot (the right foot) and proceeded to pee in the toilet bowl, using my left hand to guide the stream dead center. Everything was going smoothly (or should I say flowing smoothly?) until the wheelchair started rolling away from me because the floor wasn’t level. Panic in the restroom! Fortunately, I was able to stretch out my left leg and hold the wheelchair in place with the toe of the boot until I finished the job. I thought, “This is amazing — all four of my limbs are working productively on independent tasks, and I’m just overseeing everything like a manager. Great teamwork!” I work at a public charter school in the Bronx which is known for its relaxed, friendly atmosphere and for offering children challenges they willingly work hard at. We’re an elementary school, and we try to set up as many unusual situations for the kids to experience as possible. My desk is at a cubicle in a room that’s been divided up into eight smaller spaces. If I have to attend a meeting in another part of the building, the school’s founding director, whose cubicle is next to mine, wheels me out into the hallway. As soon as he sees a student walking alone in the hall, he waylays the child and says, “Please wheel Dr. Ballard to his meeting in Room X.” The child usually smiles in disbelief and seems thrilled by this unexpected opportunity. In addition, it gives the two of us a chance to chitchat, and if we have to round sharp corners or maneuver between tables and chairs, the whole thing turns into a learning experience as the child backs up the wheelchair, tries to reposition it and proceeds forward again. In the photo below we’re just about to make a sharp left turn into the school’s main office. It’s marvelous. In this way, I live for the moment, in the present, finding fun and doable challenges along the way. And that’s how I view having Parkinson’s, too. Sure, there may be rough times ahead withmy foot and with PD. After all, remember that Achilles’ mother held him aloft by his left ankle and dunked the rest of him into the river Styx (“Styx was primarily a feature in the afterworld of classical Greek mythology, similar to the Christian area of Hell… The ferryman Charon often is described as having transported the souls of the newly dead across this river into the underworld” – Wikipedia). But why let that hamper how I live now? P.S. I mentioned two other bloggers who have had to deal with multiple medical maladies. Here are links to their blog posts that I particularly like and are relevant to my own here. Allison Smith, the Perky Parky: I Am Allison’s Parkinson’s. Sheryl Jedlinski, Living Well with Parkinson’s Disease: Throw Open the Doors!