Stomach Cancer

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    Conflicting Risk & Recommendations

    Yesterday, I had a telehealth appointment with the NIH about my CDH1 gene mutation. The information that I got in those 30 minutes was completely different than what the genetic counselor and surgical oncologist had told me. And now.... I'm at a loss about what to do about my surgery date coming up.

    Basically what I've been told was my risk for diffuse gastric cancer was between 56-85%. But what the doctor from the NIH for the clinical study I entered said since my family history of cancers doesn't include stomach cancer, my risk was more like 30%, and instead, my breast cancer risk was more serious. That is a huuuuuuuuge difference. I have scheduled a Total Gastrectomy under the assumption that my stomach cancer risk was the more pressing issue. Getting it done and over with was how I was tackling this. I came to terms with the fact I was going to have major surgery...

    But now what? Do I cancel my surgery and hope that the endoscopy I'm getting doesn't show any signs of cancer? Wait a bit later on to do the surgery rather than next month? Or should I go thru with it anyways? What am I supposed to trust: information from the military hospital system or the NIH?

    I have no clue. But I have to find one before my surgery date creeps too close. Otherwise, I might be making an unnecessary life-changing decision out of fear that may or may not be accurate.

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    I’m a 19-year-old college advocate hoping to reach the FDA to promote the accelerate of cures/vaccines for incurable diseases. Please help by signing the petition and promoting it to your social media if you agree with my petition. We can start by passing the Promising Pathway Act Bill.

    For more information read my petition…


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    Taking Care of your Dying Parent as a Healthcare Worker

    There is nothing comparable to losing a parent. They are your foundation as an individual, your support and sense of home even if you are grown with your own family.

    There is no “good” way to lose a parent. As meaningful and compassionate friends and family try to be, it does not matter. They don’t understand. Just because I knew my dad was dying, did not make it any easier.

    I will not forget the day after Halloween when my mom called me to come over and talk. She would not say why, and I knew something was wrong. My strong father, who I have never seen cry, wept and apologized as he told me he had gastric cancer and it wasn’t good. He cried and apologized TO ME while HE was DYING of cancer. Only a parent’s love, right?

    Google. You try with every inch of your being not to google. I frantically looked up stages, second opinions, life expectancy. I can tell you gastric cancer is not good. It is one of the bad ones. Just don’t google.

    Once the initial shock wears off, you just cherish the time. My six-year-old daughter, who loved her Papa so much spent the most time over there. They played. They colored. I watched their interactions in a way I never have.

    I would go over my parents’ house at night and talk to my dad alone. I would ask him what he is thinking, what he was scared of and what I could do once he was gone to make him feel okay.

    Every word, every story, every inch of advice you hang onto and memorize. Because you don’t know when you will hear it again. It very well could be the last time.

    The first months were okay, chemo went okay, he was still himself. He still visited me. He still played with my children. He still got up and walked around, he was himself… until one day he didn’t.

    Highlighted advice here: Have the conversation.

    That can mean many different things depending on your relationship, or how you are as a person. But have the conversation. If there is something your questioning whether you want to say or ask. DO IT.

    While I am still not completely sure if there is a God, I do believe in things happening for a reason. And sometimes the timing of things makes it hard to

    question otherwise.

    My dad started getting sicker. The chemo did not work, and the cancer spread. He was told a few months at best. I knew I had to talk to have the conversation.

    There is no way to truly understand the depth of a parents love until you become one. Losing a parent makes you wonder if you were really the worst child.

    There was so many things I wish I appreciated more during my childhood. There are so many words and arguments that were so pointless and molecusle in comparison to life and relationship. And I felt guilty. And angry. And confused.

    I mustered up the courage in tears on my porch at my house with my husband and two children inside and I cried. I told him I felt guilty, I felt like he was not proud of me, I told him I was sad our relationship wasn’t better when I was a teenager. I told him I wish I knew what I know now after becoming a parent and growing up.

    I so badly wished I could have rewinded time to realize things that in hindsight are impossible to comprehend as a teenager.

    After becoming a parent, yourself, everything changes. My dad told me all the things I needed to hear. That was our conversation. Make sure you have it. Things happen so quickly, and you don’t want to miss the chance.

    He was sick but okay for about 8 months from diagnoses, then woke up one day and wasn’t.

    Throughout his journey I asked the questions my mom nor him knew to ask. I knew TPN was the best option, I knew the J tube was not. I asked about the pros and cons for chemo pre vs post-surgery. I asked for his lab results. I asked the nurses about pain management options, & medication options for the nausea. I felt his leg when he complained his calf hurt and told him it could be a PE. I read his discharge papers from the hospital and insisted on being a part of all of that. As a healthcare worker, you know. You learn.

    Having your parent dying and being in healthcare makes things a lot different. It was also a big reason that I am okay.

    When my dad finally called hospice, on his own, and said it was time for them to take over his care…I KNEW what that meant. My mom sort of knew. That is when I went into this robot healthcare worker like mode I did not come out of until after his death.

    My mom called me after hospice left and told me to manage pain, he will get liquid morphine every hour. That moment for me, is when it hit me. My dad was really dying.

    We know what Roxanol is. That means death. Along with that he could have Haldol every 4 hours (gut punch), and Lorazepam every 2 (and another). Jesus Christ they are snowing him, I thought. Did he really need all that?

    One day. In ONE DAY, my dad went from vacuuming the living room to in bed, finally slowly letting go.

    I walked into my parents’ house and felt the ominous silence that cut through my entire body like a knife. I walked upstairs to my mom sitting in the rocking chair in front of their bed, crutching, as my dad was asleep in bed.

    “Dad, its Brittany” I said. He looked at me. He looked at me with those eyes of someone that will soon leave this earth. They were glossy and looking at me, barely recognizing who I was.

    “Dad, its Brittany. I love you so much.”

    I love you too he said.

    And I leaned on his chest and cried. It was not him anymore. He was skinny, and in pain, and he was ready to stop fighting.

    From that moment on I stayed in that house.

    He peed himself. My strong, powerful, dad, who would never show emotion was covered in his own pee. My mom did not even know how to change the bed with someone in it.

    I knew this is where I step in. This is where I become what my mom and dad needed. I could step up and show appreciation and try to repay them in the slightest, by being the best parents I could have asked for.

    I took all his meds and put them in a single spot for my mom to easily access. I wrote the meds, dosage, times all on a piece of paper taped to their wall. I folded the sheet into a chuck so we could try and reposition as he started becoming restless.

    So, your telling me, it is okay to give my dad Morphine Haldol and Lorazepam every hour? It felt wrong. Working in acute care your working to get people better to send them home.

    “We are helping him move on to the next life, I know it’s different than what your used to.” The hospice nurse would say.

    From day one of diagnoses I dreaded one thing. Him actively dying. I knew the stages, the noises, what he would look like. I knew it all. I am still trying to figure out whether if being absolutely clueless would have been better.

    When he apologized to my mom and I, this is what he was referring to. As a Police Officer he was no stranger to death. He knew what we would witness. I knew too. But my wonderful, caring, mother and wife to my dad of almost 30 years did not. She had no clue.

    And again, this is where I was meant to be. This is how I would cope with his death. Knowing I was there, and I was helping.

    One of the fastest declines I have ever seen. My dad must have waited until he truly could not anymore, to lay in that bed, knowing what was next. I tried to comfort my mom the best I could. She cried in a way I have never heard and I won’t ever forget it.

    Her husband, her everything, was dying in front of her eyes and she had no idea what was going to happen next.

    I did.

    Now, he laid comfortably in the hospital bed in my sister’s old room. I repositioned him, played soothing music, put cool/warm clothes on him, removed blankets and then added some. I put the sheets he had vomited on in the wash. I held his hand and told him how much I loved him, how sorry I was that we had he had to go through this, and that we would be okay.

    In these moments I did these things and did not have emotion. I took care of him like I would a patient in a hospital. And this mindset might have been what made me so strong during these two days.

    I had been there for over a day without a shower. I missed my husband and kids. I needed to see them. I needed a mental break. I needed a nap. So, I came home late that night after dinner time. I laid down and fell asleep and woke up to a text from my mom:

    “He is making that gurgling noise, should I give him the drops?”.

    She sent that at 11:43pm. I got up and rushed over there. And he was there. Making the death gurgle, in his last hours of life. I told my mom this means he doesn’t have long. I don’t think he will make it another day. She didn’t know. She didn’t know even after I told her, that it really meant this was it. He was in his final hours, his final stage of dying. I laid on the couch outside of that room, and listened to the gurgling noises my dad made, and as sickening as it was to hear, it meant he was still alive.

    I wanted to be there. I whispered to him how badly I wanted to be here when he took his last breath. I sat in the rocking chair next to his bed for hours while my

    mom slept. He was barely ever alone. It was just me and my mom.

    I felt his skin cold and sweaty. I had to change the pillows and sheets due to them being soaked with sweat. He stopped urinating. His hands got colder and colder. I would periodically feel his pulse.

    And then, the breathing.

    If you have seen someone pass, the breathing is one of the worst things to watch. I sat there and counted: 40 seconds between breaths. Hours, and my dad would be gone. Still, in the moment “nurse mode” took over. I did everything I could. I really did. I made his as comfortable as I could. I comforted my mom as much as I could.

    I was the strong one.

    I ran home, just again to see my kids for a short minute and take a nap. I told my mom, in the room with my dad that I would be back once my Uncle Scott left, who was supposed to be there in less than an hour. My Uncle (his brother) was who he knew would be there for my mom, sister and I. He found comfort leaving, knowing my uncle would be there for us.

    My phone rang after being home for a half hour, I almost did not answer I was so mentally drained.

    “He died, get here now”.

    I am not mad, as I know they were in shock. But what a horrible way to hear it. I ran every red light and got there so fast to my uncles, grandmother and mom all crying. Phone calls being made. I just ran up to the room and hugged his cold body and cried. I stroked his head. I stared at him knowing it would be the last time.

    Now it’s been a week and a day. It does not feel real. I still imagine him walking through my door, or my phone will soon ring from him calling me to ask me when my daughter will be heading over.

    It is scary to not have my dad here. It is scary my six-year-old daughter has to learn about death, especially with whom someone she loved so much. It is sad to me that my dad will not see me graduate and become a nurse. He will not see my 11-month-old son grow up. It is an indescribable feeling knowing I won’t see him again. I won’t hug him. I won’t call him over stupid things. All the small things that you never think twice about, until you hear the news that your dad is dying of cancer.

    I am only 26. My dad only 61. I had a lot more growing up, and a lot more goals to obtain that I would have loved my father to see. I know he would be proud of me for taking care of him and my mom. He knows I will continue to do so.

    The death of my dad has brought a different outlook on a lot of things. It has brought my mom and I closer. It has brought some parts of my family closer and brought other negative things to light that should have been adressed a long time ago.

    The waves of the strongest sadness do creep over me. And I cry. I cry with the deepest sadness I have ever felt. Then it goes away. And I try to be happy. I try to be strong for everyone, including myself.

    In the meantime, I will continue to take it day by day.

    I love and miss you so much dad.

    June 25 1958- May 31 2020.

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    First week of Adult Partial Program: Oi #Depression #Anxiety

    I’ve been absent from the app for several days because I just started my virtual Adult Partial Hospitalization Program. In all, it’s been going well, partly because I’ve done DBT before in 2009, so it’s a familiar concept for me. It is nice to have the reminders, though.

    Plus, since it’s all virtual, I’m not in a room with other people and can’t pick up on their emotions or energies, so I’m just dealing with my own (Highly Sensitive Person here, and I have a knack for reading people- Sherlock/ House style, not psychically). Plus, the two subluxations in my neck came back, and besides the fact that I’m still recovering from my hysterectomy and salpingo-unilateral-oophorectomy (fancy terms for I had my uterus, tubes, and 1 ovary removed), I’ve been pretty much exhausted and overstimulated. A lot. Like every day.

    My new depression meds seem to be helping, though it’s not even been a week so that could be psychosomatic. Still, I’ve had a couple okay to good days. And some really bad days, but that’s to be expected.

    I have two more weeks of the program left. Kinda feeling like I don’t want it to end right now which is weird but that could change tomorrow.

    Also, my old puppy Wilson is not doing well. The vet said he only has a few months left. I’m trying to process it.

    And to add to the fire of (my dog dying, my mental health breaking, my body going through a major change *see mental health breaking, and pain from Ehlers Danlos, etc.) one of our family friends is dying from stomach cancer. His wife seems to be handling it well, but I’m worried about 2 of his kids. This year has sucked for everyone. It’s obviously The Last Days.

    #Depression #Anxiety #PTSD #EhlersDanlosSyndrome #Pain #MentalHealth


    Being mindful of food choices

    I usually make uncomplicated food choices mostly because I have less stomach issues afterwards. Have had a few nausea free days so added hummus and a smidgein of olive oil to my spaghetti and veg and ended up with stomach pain and nausea again. Made me realise I did the right thing seeing the Dr who has arranged for me to have blood tests at home. I mostly manage my health without the Dr's intervention but after 2mths I've run out of ideas. She is testing me for everything but is also concerned as I haven't had tests for bowel cancer and have lost some weight which she is focusing on more than the dietary fat intolerance. Since she said that it's been stressing me a little as my father died from stomach cancer. I'm leaning more towards it being POTS symptoms presenting itself differently as my allergic reactions have gotten worse over the last 2yrs. I would just like to be able to have more food choices. Hopefully I will have an answer soon and just need to take care of myself in the meantime.


    why have I become so numb lately? I have #BipolarDisorder

    I hate that I’ve become so numb lately and I can’t cry at all. My grandma who recently has been diagnosed with stomach cancer is doing chemo therapy and she has said she does not want me to see her for six months because she doesn’t want me to see her in such a weak state. She has raised me my whole life and I always considered her to be my mom. It’s been a month and I’ve had moments of pure anger and severe depression but mostly I’m numb and I wanna cry but can’t.
    I have bipolar disorder and anxiety disorder