• legaljen1969's Avatar

    legaljen1969 posted an update

    I suppose the blessing and the curse of any chronic illness is that you know the signs when things aren't right. You know when to push and when you really just can't take "wait and see" as an answer. That's a hard thing to do right now in this world where everything seems to be on the strictest of triage terms. It's not like getting doctors appointments is ever easy but now you pretty much have to swear an oath that you have a completely clean bill of health or are about to keel over.
    I have had low thyroid function since I was a small child. Having problems that young does not seem to the usual way. Most people find out some time later and usually in late 30's or older from what I can tell. My doctors used to tell me it was "impossible" for me to have it in my late teens and early 20's. I kept my pediatrician through college so I knew I always had someone who believed me. Once I was sprung from his care I had to start the battle of self-preservation. Part of the signs for that, if levels get really low, can be hair loss, super dry skin especially things like elbows, moodiness, intolerance for cold or heat.
    I empathize with those of you who have to practically beat your doctors over the head to get them to pay attention. You know your body better than anyone else. Sure there are hypochondriacs in this world, but I have found so far that cancer patients are usually NOT the ones beating down the door to get MORE doctors and more treatments.
    To those who have to fight for your care, or at least be strong and assertive, my thoughts and prayers are with you.

  • legaljen1969's Avatar

    legaljen1969 posted an update

    Surfing The Emotional Waves Of Cancer and Your Angry Raccoon
    By Daniel Malito · May 8, 2020
    Cancer is such a mercurial illness. One day, things could be looking great, and the next, the entire diagnosis could change. It’s like the roller coaster at the county fair – it’s definitely as unsafe as you think, you didn’t want to get on in the first place, and now you’re stuck riding it with a teen mom hopped up on moonshine at the controls. So, you know, good judgment all around. The best you can do is hold on for dear life and do your best to enjoy the ups and make it through the downs and, overall, survive the experience.
    We all know the physical symptoms of cancer. The fatigue that makes you feel like you’ve been chained to a lazy elephant who thinks you got him fired. The nausea that makes you wish you could have just eaten day-old warm fish with mayo instead. The mouth sores that make you feel like you ate a swarm of angry bees who thought your tongue was a whale they needed to harpoon. The list goes on and on, and as anyone who went through cancer and chemo can tell you, they only get weirder from there. Weirder, more annoying, and much more painful and disruptive.
    The emotional toll of cancer
    What gets talked about less is the emotional toll that the ups and downs of cancer take on a person. Imagine not knowing how you were going to feel every day, with the Sword of Damocles hanging over your head, almost literally, every night you laid your head down to sleep. I haven’t had that many sudden changes of emotional fortune since I dated two girls in high school at the same time who were also best friends. I even got away with it for almost a month before I got caught (even I was surprised it took that long). OK, yes, I was a jerk, but in my own defense, I was also really good looking, so, you know… evens out? Of course, I’m kidding, (except for the good looking part) but the emotional shifts when you have cancer are at that level – the raging hormones, everything is the end of the world, O-M-G he is such a jerk, degree of significance.
    Any given day you wake up and things are going well, you feel like you might be finally beating this horrible disease. You go to the store, do a few things, and then the phone rings. You look at your phone and it’s the doctor’s office. Anyone who is ill knows what happens when that phone rings and the doctor’s caller ID pops up – your stomach drops into your feet and you dread picking up. Like not wanting to start the last episode of your favorite show that got canceled, you just assume it’s bad news. After all, why would your doctor take time out of his busy golf game, I mean day, to pick up the phone and call. It’s not like you can even get him or her to call back when you actually need something, you know, like lifesaving medication or to report a new potentially serious symptom, so them calling you must be bad. You pick the phone gingerly like it’s a baby bird with a broken wing that conversely may also bite your face off, and say, “h-hello?? What? Oh no. Really? OK..” and just like that your emotional state that was actually halfway decent for once has been shattered into a million pieces. The tests came back and something might be rearing it’s ugly head once more.
    Your emotions can shift quickly
    That’s how fast emotional wellbeing can shift when you have cancer, and it doesn’t just happen once, it happens many times over the course of a week, a month, a year, XXX, even over the course of a single day! It’s like living with an angry raccoon – when he’s happy and content he leaves you alone and you can almost forget he’s there and sometimes he almost looks cute enough to pet. Unfortunately, as soon as you run out of fish tacos (I have no idea what raccoons eat) he starts hissing and running around being a terror and scaring the pants off you. You do your best not to anger the angry raccoon, but no matter what you do sometimes he just doesn’t want fish tacos. That’s how fast the ups and downs of cancer can affect your mental state. At the speed of angry raccoon.
    Distracting myself when “mind demons” creep in
    What to do when it happens? Well, I can share some of the things I do. First, when I realize that my mental state is slipping and what I call the “mind demons” start creeping in, I instantly run to distractions. Video games, singing, doing my work for Health Union which is always on time and wonderful – it doesn’t matter. Anything that takes my mind off whatever bad news or “what if” spiral is trying to break up my happy. Of course, that’s only a temporary fix, but sometimes it’s just enough to pull out of the skid. If that doesn’t do the trick, then I try to pick something in the future I am looking forward to and think about that – a TV show coming back, a package arriving, the fact that I’m going to be even more Internet famous one day – whatever I can think of. Finally, when I’m lying in my bed that night and things still feel awful, I just tell myself, “you never know what’s around the next corner,” and it’s true. I can’t tell you how many times in my life something has unexpectedly come along and within a week or two I don’t even remember what life was like before. These methods take practice, but they work.
    Cancer and emotional health go hand in hand, it’s been studied ad nauseam. It’s difficult, though, not to fall into those troughs, and you will. It’s true, you’re going to falter, we all do, and it sucks, but you’ll get better at getting back out. After all, you can’t get better at something without practice. Now I have to go buy some fish tacos. Talk soon.

  • legaljen1969's Avatar

    legaljen1969 posted an update

    "What would you do if you knew you couldn't fail?" That was a question on the wall at my yoga studio. I used to wonder about that one a lot. I could think of a lot of things I would do if I knew I couldn't fail. I also recalled the studio's second location where the students were allowed to write on the walls. I was about a year in to my yoga experience when I wrote "I AM worth it." It has been awhile since I felt that way. Far longer than I care to admit.
    I was who "I" wanted to be until about the age of 40. Then, as many people "outgrow" caring what the world thinks, it became everything to me.
    It has been a long time since I recognized who "I" am. It has been a long time since I didn't let the world tell me who I am. I am working toward getting to know "ME" again, and I think cancer was the thing that finally broke me. Sometimes we cannot grow until we break. I am accepting my brokenness and vowing to grow from it. I hope you all will be here as I continue to discover who I am, whether I always take the "right" turn or things get "left" at loose ends.

    2 Comments
    • beachbum5817's Avatar
      beachbum5817

      We are always here for you. You are not alone.

      19 days ago
    • Bug's Avatar
      Bug

      We're here. Keep talking to us. We're listening.

      18 days ago
  • legaljen1969's Avatar

    legaljen1969 posted an update

    To all who probably think, from my post about feeling "old and left behind", I am the most vain human being on the face of the earth, let me assure that is far from the truth. This mess all started when a clerk at the grocery store had given me the "super senior" discount. Not just the senior one for being over 60, but the one for being over 80 when they deduct some from your sales tax. Dang. I just turned 50. She aged me 30 years. I did find out that one was an innocent mistake. I was picking up some items for my boss's wife at the grocery store. Apparently her birth date information is on her card information so she can get pharmacy benefits as well. The clerk said "I thought you looked awfully young to be 80, but I wasn't going to ask, but you can still have the regular senior discount." I told her she still overestimated my age, but she still gave me the discount since it was ultimately for my boss's wife.

    Anyhow, I know looks aren't everything. I am not one who wears tons of makeup or has perfect hair and I definitely don't have a perfect body. I was looking forward to my birthday in December, turning 50. We had a Christmas cruise with my parents to celebrate my 50th and my father's 80th birthday. I had shirts made for me and my dad. Mine said Vintage 1969 and his said Vintage 1939. I was going to embrace my age and have fun with it. Then, a month before that- I had my mammogram and the suspicions started. About two weeks before the cruise I got my diagnosis. I was in shock. I had to tell my husband. After keeping two previous surgeries (unrelated to my cancer) from my family, and almost dying after the second one, I had promised my parents that if anything serious ever happened again, I needed to let them know, so I did. I suddenly became "damaged goods." I was now "a cancer patient." I had planned to wait until after the cruise, but my husband was worried that one of us would slip up and say something about "treatment" or "surgery" and everything would become a big drama. Either way it was a big drama over something so ridiculous. The whole tone of our cruise for my family changed from celebrating my turning 50 started turning into "the last meal before the death chamber." I had planned some "bucket list" excursions "just in case." I planned a parasailing excursion, and a swim with the dolphins excursion. My mother actually went down and told the excursions people that I was sick and "too weak" to do it. I only found out when I showed up to check in for the excursion and the people told me I had cancelled. I told them there was some mistake and I tried to rebook. I was told I had to have a letter from my doctor that I was medically cleared and there was no way I could get that letter. I asked my mother WHY she did that and she said "You're dying. You have no business parasailing." I told her I wasn't dying. Yes, I had cancer but I wasn't on "death watch" and asked her if she had ever considered that if I were dying, maybe that was a "bucket list" thing for me and maybe I really wanted to do it. She just scoffed and said "You are not able to do it."

    I sometimes feel like I am overly optimistic and I am missing something. Like I am still okay with the woman in the mirror every day. I walk out the front door thinking I look okay and I am so lucky to be alive. Then some moron tells me how wrong I am. Then I have my mother cancelling excursions telling me I am dying, despite what I am hearing from my doctors and she tells me I am not paying attention to what my doctors say. I have had conversations with them after the fact and none of them have ever said I am unable to do any of those things. I feel like I am being gaslighted. It can't be "chemo brain" because I haven't done chemo. I just feel like I am going crazy. It has gotten me thinking I really am not able. Maybe I am fragile. I don't know. I don't feel fragile. I don't feel unable. But I start reflecting on the divergence of my understanding of my condition and the way others react and I spiral out of control like I did last night.

    After a good night's sleep, I do feel a lot more confident and less like a "nobody."

    2 Comments
    • MarcieB's Avatar
      MarcieB

      You know...having had cancer can also give you an opportunity to *re-invent* yourself. I would venture to say most of us used some of our down time to access what is working for us and what isn't? I decided that once I was through this I would only agree to take on or help someone with a project if I really wanted to. In other words, I pep-talked myself into being a person who could say no and not feel guilty. I also decided not to take so many things seriously and try to see the humor that is really all around us. I can't say I have always been successful, but I am mindful that I am different - not a lot, but a little bit.

      19 days ago
    • omaalyce's Avatar
      omaalyce

      Your post hurt my heart. We go through so much physically and mentally dealing with all of this that it just boggles my mind. Maybe you should have your mother go with you on one of your appointments so she can hear first hand what the doctor says. She is not helping you, your family, your dad or herself by saying these things to you. I believe she is acting out of fear but her mindset and words are not helpful. If she cannot go with you ask your doctor if you can record what he is telling you so you can share with your mother. I have friends who do this.

      I am almost 72 and was diagnosed with Stage 3 IDC and DCIS in 2016. This is my second major cancer-not the same cells as my Renal Cell (lost my right kidney in 1993). I have had 6 other major surgeries throughout the years and still do not consider myself fragile or incapable of having a productive life. I was recently diagnosed with Rheumatoid Arthritis and if anything it has restricted me far more than my cancers.

      Since my treatment I have seen myself physically change several times. My hair has changed at least 3-4 times since it grew in after chemo. My eyes changed and I had cataract surgery and no longer wear glasses-that really changes one's appearance. My weight fluctuates-still does. Different meds caused swelling. I am finally at a place where my family and friends look at me and tell me how wonderful it is to see me looking healthy. We change, we've been through a lot but it doesn't have to stop us from enjoying life and having fun. A month after finishing chemo I went on a cruise we had scheduled, bald head and all. I had a blast, I was careful to cover up in the sun, watched what I ate and drank and enjoyed myself. I had cancer but cancer does not define who I am, it's just a part of my journey.

      As far as your neighbor he sounds like a rude person-I had other words but decided to be nice. He sounds extremely insensitive as well as offensive. Do not let his ugly words get in your head. Words hurt, I know they do but the fact that you shared so much with all of us shows me you are a strong woman. Ignore them, you are here and alive and beaten many odds. So what if your looks have changed, you are still you. We age, we change, sickness and medications can add to this but it doesn't change the warriors that we are.

      Make that bucket list and go for it. Keep that optimistic attitude and remember you can always come here and will not be judged by what you wrote. There is so much understanding here along with love and compassion. We are always here for you!

      19 days ago
  • legaljen1969's Avatar

    legaljen1969 posted an update

    I hate these nights. The nights I start having a pity party. The nights I mourn the friends and family who have fallen away. It's the strangest feeling. I want to know I am NOT alone, but I hope I am alone. I hope I am alone because I hope no-one feels the loneliness and isolation I feel.
    I am ashamed that I feel so lonely and I constantly put the blame on myself. Why can't anyone love me? Why doesn't anyone care enough to call and check on me? If I were a better person, better friend, better daughter someone might care.
    I just watched a Celebrity IOU where Viola Davis gave her friend a house makeover. I thought "It's really sad that no-one would care about me like that." Then I thought "You moron, not everyone has a friend like Viola Davis who is a superstar and can arrange something like that." LOL But then I thought again, if I did have an opportunity like that, I don't have a friend who would love me enough to even know what I would want or like. There is not a soul in this entire world, including my husband, who would even care.
    I am the smallest nobody ever. The girl in the corner who turns her back to the world so she won't be seen. The girl who hides her smile so the world doesn't have to see my ugly teeth. The girl who does everything she can to be invisible.
    Then I wonder why no-one sees me. Why no one cares?
    I hate being such a stupid paradox. I really do.
    I hate being the girl who gets to survive and have a short course of treatment when people who matter in this world die and suffer terribly with their cancer. I hate that a no-one like me is spared and that some beautiful person who has an amazing family and lots of friends gets cancer that returns over and over again and they have to go through this pain.
    It was only today that I actually admitted to myself that part of the reason I have been so slack about trying to protect myself from Coronavirus was the subconscious hope that I was immunocompromised enough that I might contract it and die that way.
    I know I talk a big game about fighting to the bitter end and not giving up. But that's not the talk I give myself. That talk is for people that matter. That talk is for people who would be missed if they vanished from this earth. That talk is for people who have purpose. That talk is not for me.

    3 Comments
    • Lindy's Avatar
      Lindy

      I am a 22 year widow, I really am home alone. Maybe work on the positives in your life and not be so hard on yourself. We are what we think, reach out, find a cause into which to invest your skills/interests. Right now I am with a group making pillow dolls for the children at the border, it makes my heart a little happier knowing my best efforts can give a child a token of love.

      21 days ago
    • Bengal's Avatar
      Bengal

      Obviouly, you are in a really bad place right now. First, take a deep breath. Now, what do you need to do to get yourself out of this hole and it is something that you have to be proactive about if you want to move forward. After reading what you have written here I was at a loss for words. This may be way more than a few comments from WhatNexters can fix. I strongly urge that you seek counselling. When I was at my lower I was pushed to seek help. I resisted at first (I didn't need mental health counselling!) but I did take the recommendation and realize now it was one of the smartest things I ever did.

      21 days ago
    • legaljen1969's Avatar
      legaljen1969

      I am waiting for my referral to counselor. I appreciate all that you WhatNexters have answered for me. I think this may well be the fastest I’ve ever gotten myself booted from a support source. Knowing that others feel despair and doubt and the feeling of burden, I felt like I could say my things and get it off my heart.
      I will be praying for all of you that you all get rid of cancer and have NED for years or forever. I pray that those who continue to get bombarded with more cancer news find some great treatment and have the least pain possible in your cancer journey.
      My survivor guilt just feels more guilt than survivor.

      20 days ago
  • legaljen1969's Avatar

    legaljen1969 posted an update

    In light of the number of stories I have seen and experienced lately regarding people who say really insensitive things, I wanted to share this story. Often the things said to us as cancer patients are not said in anger, but they still leave behind damage.

    On the other side of the coin, I have been thinking a lot about this story when I am tempted to respond back in a snarky way, or to treat someone unkindly out of frustration.


    Nails In The Fence
    Author Unknown

    There once was a little boy who had a bad temper. His father gave him a bag of nails and told him that every time he lost his temper, he must hammer a nail into the back of the fence.

    The first day the boy had driven 37 nails into the fence. Over the next few weeks, as he learned to control his anger, the number of nails hammered daily gradually dwindled down. He discovered it was easier to hold his temper than to drive those nails into the fence.

    Finally the day came when the boy didn't lose his temper at all. He told his father about it and the father suggested that the boy now pull out one nail for each day that he was able to hold his temper. The days passed and the young boy was finally able to tell his father that all the nails were gone.

    The father took his son by the hand and led him to the fence. He said, "You have done well, my son, but look at the holes in the fence. The fence will never be the same. When you say things in anger, they leave a scar just like this one. You can put a knife in a man and draw it out. It won't matter how many times you say I'm sorry, the wound is still there."

    The little boy then understood how powerful his words were. He looked up at his father and said "I hope you can forgive me father for the holes I put in you."

    "Of course I can," said the father.

    2 Comments
    • beachbum5817's Avatar
      beachbum5817

      I have never seen this before now. It is very powerful. Words said in anger can never be unsaid or unheard. It is better to think before you speak, but I don't always do it. I have been left with situations that can never be explained or corrected. It isn't a good place to be.

      21 days ago
    • MarcieB's Avatar
      MarcieB

      Thank you for sharing this story. It is a powerful way to illustrate a truth.

      21 days ago
  • legaljen1969's Avatar

    legaljen1969 posted an update

    A couple of days ago, I was knocked way backward. But then I remembered that I had been quite fortunate and need to share that story of hope.

    I have relatively small breasts and no family history of breast cancer, at least not on my mother' s side. At least not that I know about right now. My mother was adopted, and as far as she is concerned- her adoptive family is her family and has never wanted to look into her biology even if it means not knowing about some "family history" that might make a difference. I respect her wishes and have not gone digging. Quite honestly, I am not really up for digging up old ghosts either after watching it turn out badly for a close friend. Anyhow, back to my story.

    November 8, I had a mammogram after two years of delay. I wasn't afraid to have it, quite the contrary. I figured I had small breasts and I would know right away because I would feel something. It just wasn't "convenient" to pop in for a mammogram. I had a new primary care doctor and he insisted. So... I went. I "knew" it would be the same old story. I would get the post card telling me to come back next year- same time, same place. Only this time it wasn't. I was called back to have follow-up images taken. They saw calcifications in the images. Small dots, like pepper flakes spread throughtout a few areas of my breast. Nothing I could feel. It might have taken a few more years before I could feel it. It was concerning enough to refer me for "breast care."

    I don't think I really heard anything else for the next four months. I remember only these words- cancer, biopsy, DCIS (ductual carcinoma in situ), lumpectomy, radiation, hormone therapy, really not good, can't get clear margins, mastectomy, no radiation after mastectomy, PET Scan, MRI, sentinel lymph node biopsy, got it all, low Oncotype DX score, low risk of recurrence within nine years, no real benefit to chemotherapy, start medication."

    Everything else was just filler. Maybe it was important stuff, but it was just there. Words floating in the air, like someone far away from me was saying something in a garbled way. It sounded like Charlie Brown's teacher on the intercom in the next room. That far away sound like you sort of hear when you are partying too much in college and you know you are going to have a horrible hangover the next morning.

    So, how to figure out what Charlie Brown's teacher said? Get someone or a few people on your team right now. If there is a "nurse navigator" for your care team, utilize her/him and make sure you feel comfortable asking questions. Ask lots of questions. Have someone else with you to help you write down the answers, and to hear what you miss when you feel like you are in a haze.

    The one thing I realized early on in my diagnosis. They caught this cancer EARLY, by imaging, way earlier than I would have caught it if I had waited for it to grow to a size I could have felt. I was Stage 0- almost in "wait and see", except that there were a few areas of calcifications seen. I realized I was lucky to have a primary care manager who insisted I go ahead despite having eight previous "normal" mammograms. I realized I was lucky to have proactive doctors who started my referrals right away. I had a great surgeon, a great oncologist. None of them, despite my early stage of disease, wanted to play the waiting game.

    There IS hope on the other side of that "C" word, when all time stops for you for a moment, and the words fade away. And the one word they may never even utter is the only word your mind and heart may hear, "dying."

    Please don't go there if you are told you have a very early stage of cancer. Listen when they tell you that there are a few things you may have to do, but you have a good chance and they believe you have a good prognosis. Listen to them.

    Never once was "dying" on the menu for me in terms of prognosis. As I have said before, LIFE is terminal. The moment we take our first breath, we are on a path to death. Some of us live a few months, some over 100 years. It is NOT the days in your life, but the life in your days.

    I was most certainly given a second chance at life to tell people LIVE. Live large. Live with hope. Get those boobs checked whether you feel anything or have had 20 years of mammograms. I hope you have many more. But if you are on this site, chances are that you had all normal mammograms until you didn't.

    Just remember not to hear things your doctor didn't say. And try to have someone come along to help you remember what he or she DID say.

    1 Comment
    • JustGrateful's Avatar
      JustGrateful

      Very well said, I can relate to everything so much.

      about 1 month ago