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    Our Journey with Yosh

    Our Journey with Yosh

    We received a pre-natal diagnosis at five months into my pregnancy, and then did amniocentesis because I was 40 and we wanted to be prepared. We are Orthodox Jews and there our belief and faith helped us throughout Yosh’s life. There was never a choice or decision to be made. Yosh was ours as soon as we knew I was pregnant. I felt a connection to him before he was born and Down Syndrome was information to get used to. That doesn’t mean we didn’t grieve the baby we expected. There was grief, sadness and fear. But G-d knew what he was doing. We were both special education teachers, me for 20 years and Ken just starting out. I worked with pre-school and kindergarten while his Abba (Hebrew for Dad) worked with teens.

    After his birth, we spent ten weeks in the St. Joseph’s NICU since Yosh had pulmonary hypertension, pneumonia and a hemangioma on his liver, in addition to severely clubbed feet. We could only hold him for 5 minutes at a time because he was intubated and we could put our hand though the opening and touch his arm. Someone in the community, I’m afraid I don’t remember her name, arranged rides for me to the hospital every day. I sat there and sang to him and talked to him. I don’t know why, but I sang The House at Pooh Corner and Adon Olam most of the time and for years he only wanted those songs when he was sick. There is very little harder for new parents than going home without your baby. My husband, came after work and we left together. I spent 10-12 hours a day at the hospital.

    Yosh finally came home with an NG tube. We had to learn how to put the tube in and feed him by tube while trying to get him to use a bottle. He was up every few hours at night from acid reflux. We did Stepping Stones which is a program just for babies with DS. We had feeding therapy at home. Even though all the babies were the same age, Yosh was not learning as fast as the others and that was frightening. We had to learn not to compare Yosh to anyone, even children with Down Syndrome, which wasn’t easy. But we celebrated every little new skill as the major accomplishment it was. He was the happiest baby ever. I had never known I was capable of so much love until Yosh came into our lives.

    We always felt there was something special about Yosh. People were and still are drawn to him. There were some surgeries, to straighten his feet, and to remove a benign tumor on his liver, but Yosh sailed through everything with joy.  Learning was slow.  We did sign language and that helped him communicate but he was still behind even the other kids with DS.   But when he walked into a room, he lit it up. He loved being in temple, and still does, wanting to be right next to the bimah, which is the stand in a temple where we put the torah.

    Yosh continued to have feeding issues and nothing worked until we through the bottles away and he just started eating. A few months later he went to Camp HASC, a Jewish camp for children with special needs, for the first time and came home biting and chewing. The truth is Yosh learned to eat when he and G-d were ready for him to do so. We quickly learned nothing happened in our time. Yosh had his own schedule.

    We always suspected there was more going on than DS, but there were so many other issues and maybe we were afraid to get an official diagnosis but the school sent him to a neurologist when he was 13 and we went on our own to a developmental pediatrician. We got a diagnosis from one of them of autism and the other said ADHD. Yosh loves people and is very affectionate but plays on his own and has certain routines. It finally explained why he was so far behind peers with DS.

    Yosh is also a “rock star”. Counselors at HASC and YACHAD fall in love with him. He brings joy wherever he goes. We believe Yosh talks to the angels. and they talk back. It is a belief in Orthodox Judaism that children with special needs are closer to G-d than other people and we see it in Yosh every day.

    Not everything about having a child with special needs is easy, even when that child spends his days laughing, singing, and giving hugs. It’s hard dealing with bureaucracy and red tape, getting services, having to see specialists, etc. But Yosh is a joy and always has been and I’m grateful G-d chose us to be his parents.

    Neither my husband nor I were born into religious families. He became observant as a teen and I learned faith when I met him. It has made the difficult times with Yosh so much easier to bear. Yosh has been hospitalized more than any young man should be. Five years ago he went into respiratory failure twice and we almost lost him. We spent a month in the hospital. Last year he had a bizarre gastrointestinal problem and again almost died. He came home with a tracheotomy and a g tube. The trache tube is gone, but the g tube is permanent. We learned how to change both tubes, how to suction him and how to use a feeding pump. These are things we never expected to learn, but Yosh is still the happiest young man you will ever meet Ken and I also have this deal between us that when Yosh is sick, only one of us is allowed to fall apart at a time.  And sometimes we say to each other “It’s my turn.  You need to be the strong one right now because I’m going to crash”.  And that works for us.  One is holding it together and the other can cry or scream or sleep.  And then, it’s like, you’ve had your turn, now it’s my turn to fall apart.

    This child who has very little language had this specialness about him….we would walk through a store, he was always a very social boy especially with women, he was always a flirt! Yet, every once in while there was somebody that he had to go up and either shake hands with them or put his hand on them….sometimes, he would go up to someone and give them a hug.  I know children with Down Syndrome are famous for hugging but Yosh was never like that – there had to be something going on – and very often the person he went up to (we found out later) was in crisis; cancer or grieving over a lost loved one.  It wasn’t always a Jewish person that he went up to, it mostly was women…but one time we were in the supermarket and we went past this man, not someone we knew…and Yosh really indicated to me that he wanted to stop and he wanted to hug him.  He was about five.  He made the sign for hug and he was trying to get to this man and I was saying, “No, Yosh, we don’t hug strangers…” And the man saw us and he came over.  And he said that he had a brother with Down Syndrome that he hadn’t seen in many years and he missed him terribly….and somehow my son knew this!  So even though, there’s a belief that children with special needs have the soul of a prophet who has very little left to return to the world for…and because they have a simple task, they are given a ‘simple’ life. Part of me is like…When did I become a person who believes in this?  But he just has this other wordliness about him.  He has a blanket which he got in NICU that is his his tallis or prayer shawl….he just puts it over his head. When he has his tallis blanket, he needs a prayer book and he moves like the men in prayer..   He has never once picked up an English book, a children’s book or any other of the hundreds of books that we have.

    I don’t want people to ever feel sorry or to feel afraid if they find out that their child might have Down Syndrome or a diagnosis of autism….because it is not something to fear.  I think we get as much, if not more, joy from Yosh as anyone gets from their typical child.  When things are difficult, when he is in the hospital, when I have to deal with bureaucracy and red tape to get him the services that he needs, I have learned that I am a stronger person than I ever believed I could be!  I was the shyest, most insecure, mousy person before Yosh.  I couldn’t speak up for myself, I could speak up for my students at times.  But being part of a social group, just speaking up for myself terrified me.  I have learned that when it comes to my son there is term that a lot of us use in the special needs world, that we are “Mama Bears”.  That Mama Bear comes out and you better get out of my way because if he needs something, he is getting it!  And I am generally polite about it until I find out that the time has come to not be so polite!

    About two and a half years ago, he had to have a complete evaluation done (every three years they do a full workup).  This new woman was very thorough and she saw that they had never done a neurological exam.  And we decided to follow up on this on our own at St. Joseph’s.  The neurologist found that he was autistic.  The developmental pediatrician felt that it was ADHD.  And I learned that autism was the magic word in NJ!

    Yosh’s needs did not change.  His services, however, went through the roof!  All of a sudden, we were eligible for behavioral therapy at home.  He was allotted 10 hours a week, we decided to go for six.  He was eligible for a case manager to help us with accessing other services.  We were given family support services to help my husband and I with how to deal with our stresses…..if you just have Down Syndrome..you got very little, but if you have autism, everyone is scrambling. We had always kind of known that Yosh had to be autistic…as social as he is, he can play on his own for hours…he doesn’t make eye contact easily, he’s very good with his counselors but in a group full of children his own age, he doesn’t realize that they are there…he only started last year to play a back and forth game with another child in school.  So instead of it being like “Oh my…child has autism”..it was like “Okay, that explains stuff.  We have new information”.

    The developmental pediatrician put him on Adderral and that has worked miracles.  He is able to pay attention, his language has developed….Within months of being on Adderral, I went to his IEP meeting and his therapists and teachers were jumping out of their skins to tell me the how much he has been doing…the difference in one year was more progress than he’d made in the past six!  He is able to tell me how he feels, he is able to tell me what he was Yosh used a combination of words and sign language.  He’ll come over and pull at my arm and I’ll know that he wants something.  One of these cognitive progressions was that Yosh realized that if I didn’t have my glasses on, I couldn’t get up and do stuff.  So, before he’d talk to me, he’d hand me my glasses…and that’s not something he was aware of before.  And he sits there and he does the jabbering that he’s doing now and we say “Use your words” and we lead him though it and he can do with the signs “I want eat” or “I want TV”.  Or he’ll hand me a ball that has lost some air and he’ll (blow) with his hands.  It also used to be that the only thing that Yosh would play with was a ball or a string.  And then, he found some of the toys that I use in my work and he loves MagnaTiles!  And it’s the first thing besides a ball that he ever played with. And I would sit there and try to get him to do a puzzle and it was torture.  (Yosh demonstrates).  One time, he put then all together and he stuck them on his head and he said “Hat!”.  And this was all so new! It was wonderful.

    One of the wonderful things about having a child who is delayed is that when that one thing comes, it is so much more amazing…every Mom waits for the moment when her child first says “Mama”.  Yosh was able to say “Abba” by the time he was two because it was an easy sound for him…so Abba got lucky.  But he couldn’t make “M”’s.  Yosh was seven years old when he first said “Mommy”.  And I remember that moment so clearly!  He was sitting on the floor of the kitchen and he said “Mommy” and even now, talking about, I get what I call my happy tears…because the moment is so special…when you’ve waited seven years for “Mommy”, you never forget that!

    The first time he came home from school – and every day I asked “What did you do in school?”  – and one day he told me that he paid attention to the teacher and he colored…in words and signs.  Mostly the signs help him to say the word.  He’ll do the sign for attention and say “Tention”.  These past few weeks, he’s never had such a long burst of progress since he came home from camp.  I took Yosh to work with me….he just played with the stuff I brought for him and I said “Yosh, you did a good job!”  And one of the things I have had to accept is that Yosh loves his Abba just a tiny bit more than he loves his Mama.  He is Abba’s boy and it’s okay because the relationship between them is so beautiful.  All fathers love their children but the connection between the two of them…I’m okay with being number two.  So when something is really important….because Ken isn’t always there when Yosh has his moments…I tell Yosh we are going to tell Abba what a good job you did.  So I said “Good job” and he said “Job Abba” all on his own.  And I said “Yes, we are going to tell Abba”.  And he said “Yay Yosh”.  He’s also his own biggest fan.  And as we were walking out of the house, to the car, the wheels were turning in his head….and he went “Job Abba ball”…because Yosh’s life revolves around balls…and what he was telling me was “Well, if I did a good job and it’s important enough to tell Abba, then you should buy me a ball!”.  And we went to the nearest dollar store and I bought him that rainbow ball and he knows that he got that for doing a good job!

    Groups of women with children with special needs and groups of parents of children with autism are on Facebook a lot….and children have behaviors.  Yosh might bite himself but his bad moods last two, maybe three minutes, whereas other children have hour-long meltdowns.  We have been to concerts with him…he has gone to rock concerts and symphonies.  NJ has an intergenerational orchestra which has high school students through seniors who play together….it’s free so if he makes some noise….if he’s done he will let us know but he’s not phased by crowds or noise or lights so we don’t have the same difficulties…for most children with autism, the world is a big, bright uncomfortable place.

    The hardest thing with Yosh is that he is next to impossible to punish!   Because you put him in a timeout, and he drums on his lap and he sings.  Usually, he just laughs.  If his Abba is not happy with him, he cannot bear it…it is so devastating and then he cries and he needs Abba to tell him that everything is alright.

    The biggest challenges are the bureaucracy. Yosh is on Medicaid and they say they sent you a letter but they haven’t.  Then, you have to put together all this evidence etc.   So, it’s always jumping through hoops.

    The joys are every morning I wake up to the hugest smile and a hug that nearly strangles me and I start my day with a child who is just so happy and so charging and ready to get out there and start his day….my 18-year-old snuggles and lays his head on my shoulder and he gets as close as he can and he falls asleep on me.  At an age when other teens are like ”Drop me off at the corner so my friends don’t see you” and “Don’t kiss me in front of them!”  Yosh may not be able to tell me what his day was like but other teens aren’t giving their parents anymore information…everything is “Fine”, how are your friends, “Fine” “Dunno” and I have this child who all of a sudden just feels the need to get up and dance or he’s watching TV and he’ll run into the room and he’ll give me a kiss and then he’ll run out of the room.  It’s not that there’s one instance that I can particularly pick out…it’s that our daily life with Yosh is filled this smile that stretches so far…we joke that he’s going to have laugh lines by the time he’s twenty. We have an 18 year old who looks 12 and has the skills of a 4 year old and who makes us happy every minute of every day.

    My best advice to new parents is don’t listen to anyone who tells you anything negative.  You will get more joy from this child than you can ever possibly imagine.  Don’t feel guilty that you are grieving for the child that you expected.  It’s normal to feel sad, it’s normal to feel angry.  We all feel that and it will come back to you at different moments in your child’s life.  But this child will teach you more about love and acceptance…he will teach you to be strong…he will teach that you are a part of G-d’s plan and that this was all meant to be.  And that G-d has put this child here for a reason…and sometimes we don’t know what that reason is….we don’t know what His plan is….and we go through hard things…and we may go through more hardships than other parents but we also go through more joys. Let your child be who he is….don’t worry about what other children are doing.  Don’t even worry about what other children with Down Syndrome are doing.  Your child will do what he is able to do when he is ready for it….and when he does those things, you will be happier than you can possibly imagine.  Take each day with the knowledge that G-d made your child the way He wanted him to be and He gave him to you…and you are on an amazing journey and someday you will look back and see just how incredible this was……Search out other families and make those connections because it always helps to talk to someone who has walked in your shoes.

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    Community Voices

    Medical Nightmare #ChronicPain #Fibromyalgia

    I have been in horrible pain for about a year and a half, mostly in the middle of my back but it is everywhere my muscles, skin, bones, joints, and horrible nerve pain. I have been to several doctors and three have said it "sounds like" I have fibromyalgia. One primary care physician did a blood test and everything was negative. I went to a rheumatologist who specializes in fibromyalgia and he pressed on my trigger points and said it seems like it is fibromyalgia. When the rheumatologist's medications weren't working and they kept trying to get me to buy their expensive topicals and CBD I got fed up. I had to find a new primary doctor, she tried two medications that did not work and told me I need to have a breast reduction but first I need to lose weight and/or I need to go to physical therapy. She was never really helpful and I felt like she didn't take me seriously it was very frustrating. I finally went to a pain management clinic and they were shocked that no other doctor had done more tests. So they ordered imaging. I had a cervical and thoracic MRI done. I recently got the results back. Three 1.5mm herniated thoracic discs beginning to press on my spinal cord, one bulging cervical disc and a 6mm cervical vertebral body hemangioma. My pain is mostly in the middle of my back and I get bad neck pains and headaches so this kind of made sense. But I'm not sure how this would cause the pain everywhere. The doctor recommended physical therapy and/or an epidural steroid injection. The problem is that I am terrified of needles and surgeries, especially anywhere near my back. I had a wisdom tooth removed a year ago and had one of the worst panic attacks of my life, so I cannot even imagine the epidural, just thinking about it makes me want to panic. The pain doctor is not convinced I have fibromyalgia, but she also isn't too worried about the herniated discs and this is the only solution she has provided. Not to mention there's no knowing if or how long it will work, plus all the costs. $300 dollars to do the epidural in the clinic, $600+ to sedate me (optional) at the surgery center, physical therapy is $80 every time I go until I meet my $6000 dollar deductible. I am a full-time college student who cannot afford all these things. I am so sick of being in pain, it interferes with everything in my life and I am at a complete loss of what to do. I am absolutely terrified of the idea of needles in my back or anywhere near my spinal cord. Not sure how to put so much trust in these doctors. Has anyone experienced anything like this? Or have fibromyalgia and has had the epidural? Any ideas or advice?

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    Community Voices

    Fighting the Good Fight: My Chronic Illness Story & my Faith

    Some things I’ve had a hard time coming to terms with. What do you mean I’m stuck with this? How am I supposed to live with it? Why don’t my peers believe me?

    Chronic pain is real and it sucks. I remember the exact moment my life changed. I’ve seen it as a change for the worst, as most people see it as having worsened my life. Heck, how could you not ; it’s made me miserable. But at the same time, if it’s God’s plan, how could it?

    July 21, 2017 after a hot summer day at the pool, I came home early as I’d been feeling nauseated all week. I was watching a movie, The Longest Ride, to be exact, with my dad while enjoying a root beer float when all of a sudden, an immense pain shoots through my lower right quadrant. I had no clue that pain would change my life. It never occurred to me that one day I’d wake up sick and never get better. We figured it would go away but it never resided. My mom was obviously concerned about appendicitis, so I went to urgent care the next morning. I was told it was either appendicitis or a bad ovarian cyst. I was sent to the hospital for an ultrasound only for it to find nothing. This was the very beginning of an endless cycle of tests, doctors, and doubt.

    I was sent to a surgeon who would eventually take my appendix out for no reason other than to rule it out and do an exploratory laparoscopy, which would be inconclusive, of course. I’d have an endoscopy and a colonoscopy. More ultrasounds only finding a liver hemangioma which is no big deal.

    Doctors quit believing me. That hurt. How could you not tell that I’m in real pain. I couldn’t even eat. They began to say I was just anorexic and depressed, my mom began to believe them. I lost my friends. Yet I continued to persevere through the hurt.

    I was at a crossroads spiritually: torn between being mad at God and begging him to help me. I did a mix of both. I’d pray and pray and pray with no results and then I’d become angry. How could a God so just allow me to suffer like this.

    I’d never experienced more pain in my life. My head throbbed, my stomach felt as if it was being stabbed, my chest wouldn’t stop thumping, my heart rate accelerated, my stomach empty as I could not eat, nausea, dizziness. The perfect storm of agony.

    Why me? All I’ve ever been is faithful. Why not some awful person who probably deserves this? But then I’d think, this pain is unimaginable, I’d wish it upon no one. Why me? But why not me?

    Having this disease, you wonder if God is somehow punishing you. He’s not. It’s important to know that your pain has a purpose. I truly believe that God chose me to have this so that I could bless others in some way; to share my testimony and help others. God gives us these obstacles so that we come out stronger, with better faith. You have to see it this way: if we’d never been diagnosed with a Chronic illness, we may not have come to understand our desperate need for the presence of Christ in our lives.

    The night before the meds started to help, I was done. I was in excruciating pain, hysterically crying. I was praying per usual, but this was different. I was shouting for God to heal me. I said,”Lord, I can’t take this. Have mercy. Please Lord, I know this is your will, but I’m hurting. Heal me. Help me. I need You. I can’t do this without you. Heal me.” That went on for quite a while and then I went to bed. When I woke up in the morning I cried tears of joy. God truly is Good. I know this because I was relieved of some of my pain. It wasn’t perfect; it never is, but I was doing better. We serve an amazing God.

    I have gotten even better since then. I’m learning tools to help me. I want to thank my pediatric cardiologist Dr. Raunikar, my pediatric pain management specialist Dr. Windsor, my pediatrician Dr. Donna, and my pediatric physical therapist Sarah Pates for giving me these tools. They’re the few doctors that listened. But more than that, I give God all the glory because he is the one who put all of this in place.

    Let’s get one thing straight: just because I’m doing better doesn’t mean I’m cured. This illness isn’t curable, just treatable. People have many misconceptions about this. They think I’m always better or that I’m better than I am. I’m always in some kind of pain every single day. It’s just that sometimes it’s better than others. It comes in waves. It’s like high tide and low tide.

    A verse that comes to mind when thinking about my illness and that I try to live by is Pslams 73:26, which reads,”My flesh and my heart may fail; but God is the strength of my heart and my portion forever.”

    People often wonder how I’m fine one day and not another. The thing is, I’m not fine one day. Not in their terms, at least. One day my pain and symptoms are manageable or functional and other days they aren’t. Pain varies. And sometimes just my tolerance varies. I do things at pain levels that others wouldn’t even consider moving at because if I don’t, I won’t have a life. That doesn’t always mean I’m having a good day. It means that I just managed to be stronger than it for part of the day. When I say “I’m fine” what I really mean is that today I have severe symptoms but they’re manageable. I am not having a flare currently but I’m still suffering. My head feels like I’m above water today but I’m still drowning. Please don’t confuse my definition of “fine” with yours. When a chronically ill person says that they’re tired and you say “ yeah me too I only got 4 hours of sleep last night” please understand that you’re not talking about the same kind of tiredness. I don’t think people understand how stressful it is to explain how sick you feel when you don’t always look sick on the outside. It’s awful and people won’t always believe and it sucks but life goes on.

    Speaking of people not believing me, that’s been a part of this that’s been really tough. I’ve lost a lot of friends over it. I used to be sort of “popular” and now am not, but at least I know who my real friends are. Rumors have been spread about me faking it for attention. Having invisible, Chronic illness is hard enough, being doubted, judged, or dismissed is overwhelmingly heartbreaking. One of my best friends believed this rumour, but through an article she read about Tori Foles, NFL player Nick Foles’ wife(I encourage you all to read it), she apologized. It was like a slap in the face because I thought it had been my fault that we were growing distant, when in reality she thought I was lying and I had no clue until she asked for my forgiveness. It was tough, but I did. It’s the right thing to do. It’s what Jesus wants. I of course prayed about it and we are still best friends. She had courage to admit she was wrong and felt genuinely sorry about it. I do wish people wouldn’t assume anything about Chronic illness until they’ve experienced it. I encourage you all to not judge Chronic illness sufferers. You have no idea what strength it takes to wake up each and every day to battle your own body.

    To the people that stick by me through it all: thank you. The kindness and support you have shown me means the world to me. This fight is a tough one but by showing you care you have taken part of a very heavy burden off of my shoulders.

    To be honest, some days I just don’t have the energy to hide that I am devastated by this illness. It’s ok. It’s good to feel that way. It’s completely normal. Its ok to grieve for the person you once were. I know I have. She died and was replaced with one that can barely function at times. It’s heartbreaking and frustrating but God gets me through it. Most days I do accept the reality of living with my illness, I accept and adapt to my limitations. Some days I grieve for the person I should be. I wonder what she would be like now. Some days I want to give up, but I don’t because thanks to Jesus, most days I’m stronger than that. Wondering who I would’ve been without this illness, though, is one of the most emotionally trying things to come to terms with. I was walking a specific path when I got 150% rerouted. It feels like I’m in this bizarre, alrernate, half-baked version of my real life. As much as I desperately want to get back on the track I was before, even more, I want to know where that path would have led. Who would I have been? What could I have been? We always wonder what we’ll be like when we grow up and I feel like I was robbed of ever finding out. I am constantly torn between “i can’t let this illness ruin my life” and “I have to listen to my body and rest.” I miss my life before I got this illness. I miss being able to actually enjoy things without feeling worse afterwards. I miss being able to do things without being scared of it’s consequences. Though I miss all of that, this is the path God chose for me and I’ve come to accept and embrace that.

    To my fellow spoonies(Chronic illness sufferers): i know you feel as if you’ve been set up to fail. I want you to know that not being able to do as much as others does not make you a failure. It makes you an incredibly strong individual who is trying their best. Never let anyone tell you otherwise. You are going to find out two things: how strong you are and who really cares about you. You will lose people, but it’ll be alright, if they can’t be there for you at your worst, then you didn’t really need them anyways. Forgive. I know it’s hard when people are being ignorant towards your condition, but it’s freeing and is God’s will. A quote that has helped me a lot is,” it has been a beautiful fight. Still is.” To me it means that God had put you through this for a reason and it’s difficult but you’re a fighter and you’ll get through it. You are stronger than you know. There’s strong and there’s Chronic illness strong. Together, let’s stand up to POTS(get the pun?). Keep on fighting.

    Chronic illness has taught me so much, but one of the lessons I’m holding close lately is that healing is never as immediate as we hope. It takes time. It’s unpredictable, up and down, all around, backwards, forward, and inside out. But it comes in time. It’s a process. But you will heal in time. Second Kings 20:5 says “ I have heard your prayers and seen your tears; I will heal you.” Hold closely to that.

    God has purpose for us all. Why mine is seemingly more painful that that of others is for him to know and me to discover, but I know in my heart of hearts that I’m here doing his will because of this illness. All it’s taken is a little change in perspective to see that this could be a blessing in disguise. If I can bless one person, it’s worth all the pain. That’s the mindset we all need to have. I thank the Lord for all he’s given me and for the opportunity to share my story. Shout out to all of you like me, fighting a battle that most people don’t understand. Keep fighting the good fight my loves.

    POTS

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    Heather Stoker

    Lessons Learned While Coping With Stage 4 Colon Cancer

    I wake up to rocking. I catch my breath, rise and look around. I am on a boat, surrounded by water on all sides. I can see the dock of the port we just left behind me. “Hey! Hey! I didn’t mean to get on! Can we please go back? I need to get off!” But the boat keeps moving. I realize that I am trapped. Just three months ago, I was sitting at home with what I thought was a nasty stomach bug. At the time, the word “cancer” was about as far from my brain as humanly possible. Instead, I sat on the couch (feeling guilty about missing work) and watched Outlander through severe abdominal pain. Pain which eventually turned into frequent, severe vomiting. I’m not going to provide you all of the details (and you also don’t want to hear them), but I found my way to an ER and got admitted. I felt terrible, but figured they would solve it and I would be able to get back to life as usual. They did a CT scan the next day. My husband brought the kids to visit, and the nurses said the on-call doctor wanted to speak with me on the phone. The news floored me. They had found a mass in my colon that was too big to be benign, and it would require surgery to remove it. As shocking as this was, I didn’t fall apart. This was all still very surreal. The surgeon who visited me the next day was like a “folksy” version of an older Dick Van Dyke. His tone was optimistic and confident. He told me that there would most likely be chemo afterward to prevent recurrence. OK. This is scary, but I’ve got this. I’m young! And the doctor smiles a lot. This is going to suck, but I’ve got this. Two weeks ago I was canoeing with my family and friends. Tomorrow I am getting surgery. A couple of weeks from now I will be back at work. A couple of months from now, I will be done with cancer. A wave hits the boat and knocks me over. Lesson #1 about cancer. You can’t count on doctors to explain everything to you. Especially when the news is bad. There had been a spot on my liver, but it was probably a hemangioma. The surgeon told me that he had a good look around when he had me open. He bragged about how he had cleared all of the margins, and how he had found a tiny nodule in the peritoneum (abdominal cavity) but had removed it. He was sure that the spot on my liver was a hemangioma. What I heard was, “Everything is clear! On to some mop-up chemo then I should be fine!” When my biopsy report was handed to me, the surgeon ran his finger over some of the paragraphs. “It’s a long report, but you want to pay attention to the sections on this page,” he said. There was no alarm in his voice, no indication that this report was dire. I nodded. Honestly, at the time I was more frustrated by being in the hospital and entirely focused on getting out of there. I find my bearings and start to rise, but another wave hits. I lurch over the rails and the wind is knocked out of my body. Alone in my house, and surrounded by quiet, I started googling my biopsy report. I focused on the technical details associated with the colon tumor. Eleven of 18 lymph nodes positive means Stage IIIC, which has a 53% 5-year survival rate. Wait. That can’t be true. There was nothing said or indicated to me when this report was handed to me that indicated that I had a 50/50 shot of living. I must be misunderstanding this. For the first time, something cracked and now the panic was seeping in. Even if I was wrong and my staging was slightly better, I was still looking at maybe a 70% shot at best. Hey, those are good odds…right? Great, here are dice. I’ll let you roll them on your life and then you can tell me how positive you feel. I can’t breathe. My head is spinning. How the fuck did I get here again? Lesson #2 about cancer. You don’t find out about everything right away. You wait for an appointment. You wait for a scan. It’s possible to be three months into a diagnosis and still not know the full extent of your initial diagnosis. I didn’t see an oncologist until two weeks after leaving the hospital, and a full month after my diagnosis. Yes, you read that right. My oncologist came into the room in a rush. He assumed that someone had explained my biopsy report. “We can possibly cure some stage three and four cancers,” he said. Wait, what? Well, I guess that confirms stage three, but why is he talking about stage four? “Well, of course there was that spot on your liver that needs to be taken a look at,” he said. You mean the hemangioma? “Well, I know that’s what he put in his report, but we’ll need to do a PET Scan to be sure,” he said. I puke down the sides of the rails. Going into the PET I had a sense of foreboding. There was something about the oncologist’s demeanor. He didn’t believe that the liver spot was a hemangioma. I found out later after getting the hospital CT reports that it had indicated that there were more masses found which were noted to be “suspicious for carcinoma.” My husband and I spent the weekend after the scan exchanging looks of fear. We parked the car in the parking lot, listening to a feed of the band Chvrches playing a music festival…“I know that there is a lot of bad shit going on in the world right now. So everybody — at the count of three — scream the word “fuck” at the top of your lungs! 1, 2, 3…” We both screamed, but it wasn’t nearly as cathartic as we wanted it to be. The boat is still rocking. When is this going to end? Can this really be happening? I want off now. Nobody is listening. “The PET did show activity in the liver.” Six masses, including my hemangioma, lit up like a Christmas tree. I couldn’t even get to the car. I sat on a bench outside the office, stared into the distance and repeated flatly over and over. What do I do now? How do I just go home? Go to the store? How do I even breathe? Of course, I had read the statistics on stage four colon cancer. They were really bad. Really, really bad. The boat continues it’s steady, plodding thrust forward. I look behind me. We’ve traveled too far now to see signs of the land that I left. I run to the front. Is that land? Or are my eyes just tricking me. My head says “no,” but my heart still clings to hope. Lesson #3 about cancer. You pass many islands on this journey. Hope and despair are only as far as the next scan, the next doctor’s visit. Uncertainty is your new normal. You have to find ways to cope or you will go “insane.” I processed it by writing about it, and then posting what I had read to Facebook. I know that sounds strange, but writing about it was the only way I could process…to continue breathing…to make your arms and limbs go through the motions of coming home to kids and the minutia of daily routine. My thoughts are racing, formless and so are my feelings. Writing them out forced structure. Other than family, it was the one thing I found to grasp onto as a means of dealing with this. I also searched for hope online. And got suckered in. Hope started to buoy me despite myself. There were so many stories of people making it many years with stage four. Perhaps I can beat this after all! Don’t get me wrong, I was still very scared but that thread of hope still crept in anyway. I had seen a surgeon locally who thought that I was resectable, but first he wanted an MRI. And then there was the matter of that nodule in the peritoneum. Remember that? “Well, we aren’t certain that’s all there was. The first surgery was an urgent situation and he might not have gotten to see it all,” I was told. I’m holding on tight, waiting for the ocean to settle down; for signs of hope on the horizon. Nothing settles. The waves keep hitting like sucker punches. The cumulative effect grinds away at me until I fall back down again. The next month brought several more setbacks: Genomic testing confirmed that I was resistant to certain medications that could help down the line. Second opinion oncologist tells me that I should see someone to help me deal with my own mortality. Second opinion surgeon is the first to explain MRI. Six spots are now 10-11. One stop surgical solution is no longer an option. We return to the initial surgeon who ordered it and he confirms and backtracks on all of his previous confidence about a one-stop surgical solution. Words heard from both surgeons were that “chances of long term survival are very small,” and “I was able to get similar cases an extra two years. I did have one last eight, but that was an exception.” Third opinion oncologist said, “Considering the peritoneal involvement and your number of positive lymph nodes, data doesn’t support a cure.” God damn it. Stop! You win, OK? I get it now. It’s finally gotten through to me. I’m never going back again, and the shore ahead? It’s not one that I want to reach. I am not getting out of this alive. So now what? I do chemo. I get an MRI on my abdomen. I meet with some surgeons at the Cleveland Clinic. I consider heading out to MSK. I do whatever the hell I can to stay here as long as I can. And I write about it. I write, to keep me sane. To cement the sadness and fear into structure. To spin despair into hope. To find meaning in all of this. To figure out how to live when doctors tell you that you are dying.

    Community Voices

    I don't know how to want the future that's available to me #

    I have ulcerative colitis, PCOS, and psoriatic arthritis, diagnosed in that order between the ages of 12 and 32. The onset of psoriatic arthritis came right when I was about to try fertility treatments. I ended up losing my job because I couldn't manage the workload. I went back to school, graduated, got a different job, and still planned to try for a baby when things "settled down."

    Over the past year, I've had multiple complications related to my illnesses and treatments. In July, I was hospitalized for a kidney infection, and when I had a CT scan to check for kidney stones, they found a spot on my liver.

    In the last week, I lost another job due to my many absences, and one day later, discovered from a follow-up CT scan that the spot on my liver has grown. I have to get more tests, but the doctor suspects a hemangioma. While it is most likely harmless, pregnancy can cause it to grow and become symptomatic.

    I'm 39 now. I have known for all this time that getting pregnant was possibly a long shot, and that there would be risks involved with the medications I take. I have known that my time to make this happen was growing short. This was the final nail in the coffin. I made the difficult decision that I will no longer pursue trying to get pregnant.

    A part of me is relieved to end the limbo, but I have always wanted kids. I can withstand chronic pain and illness. I can withstand financial insecurity. I don't know how to live with this. I wouldn't say I'm suicidal, necessarily - I don't want to harm myself - but it's hard to make myself get up in the morning. Nietzsche said (I'm paraphrasing) that you can survive almost any "how" as long as you have a "why" to live. I just gave up on the "why" that has sustained me up to this point.

    I don't want to die, but I also don't want this future. I don't feel like I CAN want it. My grief for the babies I'll never have is crushing. I never imagined a future where I wouldn't be a mom.

    2 people are talking about this
    Amy Van Duyn

    'What's That on Your Leg?' Life With Dermal Hemangiomas

    Dermal hemangiomas are caused by a buildup in the blood vessels under the skin, causing them to raise through the surface.  They’re more commonly referred to as “strawberry marks” due to their appearance.  This makes it sound charming, but for someone that has them as badly as I do, they’re anything but. These are just my own experiences with the condition. If you suspect that you or your child has this condition, you should speak to your doctor to be sure the hemangiomas are benign.  Dermal hemangiomas can also sometimes be located under the skin and go further down into the body, which can also cause problems. My doctor told me dermal hemangiomas are most likely genetic but that otherwise there’s no real known cause. They’re most common in infants and small children, but mine developed later into my adulthood. Not only did mine appear as an adult, but they worsened with age. I’ve been fortunate to not have many on my face, but I’ve had a few. A few small ones have taken up residence on my back, upper arms and shoulders. There are some small red dots over my upper thighs, but the largest ones I have very obviously appear on the inside of the lower part of my left leg. There’s a constellation of red dots there ranging in size from that of a pea to a small marble. There are about nine of them, and they’re noticeable. This keeps me from wearing shorts, capris or skirts unless they go down to my ankles. The few times I felt brave enough to try, exposing my legs, I experienced obvious stares as well as outright questioning, “What’s that on your leg?” I don’t think the people who ask this realize this is a permanent condition. Maybe they think I just cut myself shaving (which, by the way, is a considerable challenge) and that I’m unaware. Or maybe they’re just genuinely concerned because they think I’ve injured myself.  But it is embarrassing, and it makes me self-conscious. Plus, I just don’t have the time to stop and educate everyone about the condition. I’m afraid my annoyance is going to come across as rude. I’ve resigned myself to covering them, but I’m limited to what I can wear because of their location. In the winter I rely on boots to be able to wear shorter skirts. In the summer, the maxi skirt is my best friend. Once during a pedicure, the individual performing the service hesitated when she saw the red dot cluster on my lower leg. I explained what they were (for about the thousandth time in my life) and that it didn’t hurt to touch them and that they weren’t contagious. I wanted her to feel comfortable continuing with the service. Plus, I wanted the full lower leg massage! Her response was “Well, I’ll just avoid it” an that, she did! I paid full-price for a pedicure with half the massage — and that’s the best part! I once visited a dermatologist about having my hemangiomas removed. They informed me they have a specialist with a laser who comes in for scheduled 10-minute intervals and could remove them. The price was $200 per 10-minute session, but they told me it just took a few seconds per hemangioma. I was optimistic they could remove at least the cluster on my lower left leg. This was early spring, and I had dreams of sporting some cute capris or sun dresses that coming season. I left disappointed. A few of the very tiny ones came off, but they told me (after the fact) that the larger ones would take several treatments, if they came off at all.  That was $200 I could have spent on maxi dresses and boots to hide them! I was left with the leg cluster. Sometimes, the ones on my leg hurt. But I realize how fortunate I am that, for me, this condition is benign (which they typically are) and has caused no real health problems. I’m very thankful mine are no worse than they are. It does affect my day-to-day life, however. I’m forced with the decision to either wear what I want and deal with the stares and questions or to go out of my way to dress to cover them.  It’s more than a nuisance; it’s a lifestyle.

    Tyler McCarthy

    Teen Invents Snap-On Underwear for People With Leg Braces

    When Charlotte Robinson learned she needed to wear a leg brace for more than a year, she vowed to not let it affect the way she viewed herself and her sense of style. Now, she’s passing that confidence on to others. The 17-year-old was born with hemangioma, a disorder that grew vascular tumors in her right tibia, according to ABC News. This condition created holes in her bones, which damaged her joints and affected her leg’s ability to grow properly. By the time she was 13, there was a 2.5-inch deficit between her left and right leg, she wrote on her blog. To correct the problem, she underwent a surgery to install a Taylor Spatial Frame, which helped her leg grow properly. It went on her leg just before she began her first year of high school. Robinson learned that, due to the cumbersome brace, her wardrobe would be limited to breakaway pants that basketball players wear and velcro underwear. Deeming that unacceptable for a young woman just starting high school, she began making her own clothes and underwear with easy-to-use snaps on the sides. This allowed her to remain stylish for the 13 months she had to wear her brace. Now, she’s started a website called “No Guts, No Glory,” where women in similar situations can maintain their confidence by purchasing three different types of snap-on underwear. “Having a frame on has its own challenges that one should not have to worry about the difficulty of clothes,” Robinson wrote on her website. “That is why I have started my own clothing line that makes changing easy.” Live Mighty. Like us on Facebook .