Posts by Angela Wright

Joshua Kim69 said:Yeah, it was incredibly, incredibly hard. I know he was saved, but still—it hurts. It just hurts.😢

Please accept my deepest and most sincere condolences. I truly hope you find some peace of mind, and eventually, the strength to lay him to rest in peace. Things will never be the same again, but life has a way of pulling you through; you'll come out on the other side much stronger and much more resilient than before.
Hang in there.

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steelgardener23 said:Is there any point in seeking a second opinion if doctors have already ruled out all treatment options and sent him home for palliative care? My father had his first surgery 15 years ago, then another 2.5 years ago. It started with the oral cavity, sinuses, then the thyroid and larynx. Now he has lung cancer with metastases and is coughing up purulent discharge; he was given IV antibiotics and felt slightly better—the amount of pus has decreased. The first lung lesion was found in November 2017, but according to a follow-up CT from April 2018, it grew aggressively and metastasized to two spots in the lungs. He underwent radiation twice after the surgeries, but now, during the oncology board meeting in June, they told us there's no sense in doing anything else, especially given his current state. That was before he received the antibiotics. Is it worth reaching out to someone else, and if so, where? All these years he’s been treated at a local suburb hospital and did his radiation over in another suburb. Please, tell me something, I'm desperate!

You ALWAYS need to seek a second opinion! I know plenty of cases where people were told the exact same thing, only to seek a second opinion outside the local system—like going to the Dana Farber Cancer Institute in Houston—and discovered five different treatment paths that were actually viable. Around here, palliative care is reduced to nothing more than pain management in 90% of cases. Abroad, they provide medications and supportive therapies that can actually slow down the progression of the disease and give a person more quality time.

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Oh man,
Look, no matter how much this hits you right now, you need to pull yourself together and focus entirely on yourself and that little one.
Life is just one endless, uphill battle when you step back and look at the big picture. We just have to keep pushing.

Rachel Williams said:It’s been four months since we lost Mom, I’m three weeks away from giving birth, and then yesterday we found out my aunt has lymphoma... 🕺

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Hug, dear

Sophia Reyes3 said:Hey there,
it’s been about three years since I last posted, and I’m still hanging in there 🙂. I want to wish everyone nothing but strength and persistence in this fight, and a huge thanks to Angela Wright.

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Kimberly Taylor92 said:Thanks. I don't mind if this stays public. I'm looking for info on treatment methods, types of therapy, where she received care, and if there's any hope for recovery.
It's my mother we're talking about. Symptoms first showed up in month 12, and by mid-month 2, she was diagnosed with malignant pleural mesothelioma.
We went from being told the prognosis was positive to a point where none of the doctors have any real solutions left.
She finished four rounds of chemo and was supposed to undergo surgery here in San Francisco, but a pulmonary embolism hit between months 3 and 4, making everything much more complicated. The chemotherapy hasn't yielded any results, and now they're refusing to operate.
She’s traveling to New York City to see the specialists we were previously in contact with, but they won't perform the surgery right now because she's too weak while waiting to recover—and time is definitely not on our side...
Naturally, we're looking into every possible remaining option and seeking out anyone's lived experiences.
Thanks again for the help.

Pleural mesothelioma is a rare and very specific malignancy that typically affects people who've had years of exposure to asbestos dust.
It's an incredibly aggressive disease that tends to be highly resistant to standard oncological treatments.
That's basically the extent of my knowledge.

If she isn't aware of any past asbestos exposure, you really need to scrutinize her living environment and the construction materials used in her home. It's entirely possible she's surrounded by dangerous asbestos-containing tiles that need to be removed immediately to protect everyone else.

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Raymond Smith53 said:That’s way too long of a wait. Is the machine broken or what? And what do you mean by "abdominal markers"? Be specific about which ones. There’s no such thing as just "abdominal markers"—that's way too vague a term.

I'm talking about cancer markers that target organs within the abdomen. For example, CA 19-9, CEA, CA 72-4, or AFP.

They’re probably waiting on a PET scan. There are only two or three facilities in the entire US that handle them, so that explains the delay.

Linda Fox2 said:Thanks for getting back to me. I forgot to mention that when he was admitted, they did an abdominal ultrasound which showed some masses on the liver. But the tricky part was that his abdomen was apparently full of gas, so the images weren't very clear. My husband is just relaying what happened; I haven't actually seen the lab results since he was admitted to the hospital.

The Oncologist also thinks the primary issue is located in the abdomen. She didn't specifically mention the pancreas. His lung markers are high, but the abdominal markers are even higher (I don't know the exact numbers, but my husband mentioned something over 4000).

He honestly had zero symptoms until about a month and a half ago when those masses were found. Is it possible for metastases to develop there? How much of this is unrelated to any specific organ and just tied to the bone marrow?? If I remember correctly. If it's pancreatic cancer, from everything I'm reading, that’s definitely not a great scenario. Although it says elevated blood glucose is a common indicator, his glucose levels are perfectly normal.

It's possible he developed ascites (where fluid builds up around the liver).

Yeah, the situation definitely doesn't look good, and it seems like things have progressed quite far if the primary site isn't playing a major role. It's obvious something quite invasive and aggressive has kicked off here.
But it is what it is.
Hang in there everyone, and please keep us posted as things unfold.

I’m honestly baffled that they didn't perform an abdominal ultrasound and a colonoscopy. Those results would have cleared up so much more and provided a clear roadmap for next steps, including whether surgery is even on the table.
It strikes me that we might be looking at a case of gastric cancer that's developing "dryly"—meaning he had zero other symptoms before these issues popped up along with potential secondary complications.
You really need to push back and find out why that ultrasound hasn't happened yet. It’s a quick, inexpensive test, and when you're dealing with suspected malignancies and secondary effects, every single day counts. In my opinion, pairing that ultrasound with a later CT scan would provide a much more precise and comprehensive picture of what's actually going on.

Joshua Kim69 said:That article mentioned it was more like assistance to cover increased costs for vitamins and stuff like that. So I don't get why they're talking about medical evaluations if you already have an oncologist's report.

When I say an evaluation by a "Unified body," what that actually means is a committee sitting around reading through the attached medical files and giving their opinion based on that. Honestly, I don't think they even bother asking the critically ill patients to show up in person most of the time. For my kids, I have to trek over there constantly just to deal with various rights and paperwork, and we arrive only to find out they won't even look at the child—I’m just the one standing there answering questions to confirm what’s already written in the charts. They don't even lay eyes on the kid.

Larry Scott43 said:White blood cell count? Is this just seasonal allergies?

It's just a virus.

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If I were you, I’d watch my sodium intake and maybe grab an antihistamine if that allergy is really starting to kick your ass.

ruggedmarlin2 said:After five years fighting ovarian cancer, my dear mom passed away yesterday at 64... and I just feel completely shattered. It felt like things were finally looking up—like she was actually going to handle the chemo. But then the vomiting started again, and on the very day she was supposed to start treatment, they told us her condition was critical. Her blood pressure was crashing, her blood work was a disaster... they said we only had hours left. She was talking to us so beautifully that day; she seemed so calm, seemingly free of pain. We tried so hard to stay strong for her because all she kept saying was that tomorrow would be better, that she just needed a little more time to recover. Honestly, I don't think the doctors gave us the full truth, and maybe we didn't have the courage to say goodbye either, so we just kept saying "see you tomorrow." Even at the very end, she was thinking about everyone else—asking if we should buy some juices for the nurses, telling me to tidy up the room before they arrived, and wanting me to celebrate my birthday in a few days. Those few hours flew by so fast that I couldn't even find the right words to say to her one last time... it's like I missed my chance. Now I feel even worse because I can't shake this feeling that I didn't do enough. I shouldn't have gone out with my friends this weekend; I should have been by her side all day. I should have hugged her every single day like it was the last. There's so much more... and now it's too late.

My heart goes out to you.

Don't beat yourself up; you did exactly what you were supposed to do, and you did it the way she wanted. And please, listen to me: celebrate your birthday, no matter how impossible or painful it feels right now. Your mom lived her life right up until her very last heartbeat, and that is the legacy she left you—both a gift and a final, vital lesson. Live every day and celebrate your birthday as a celebration of her life, too. Don't dwell on regrets. You fought bravely, and given the circumstances, she had the best possible passing.
And even if you'd had the chance to say a formal goodbye, believe me, she would have felt the exact same way. Our entire lives are essentially one long, continuous goodbye. She left us peacefully, and I am certain she went with a light heart, unburdened. Be grateful for that. It is a profound mercy.
Let her rest in peace, celebrate her life loudly, and move forward, honey! Mom is watching over you, and don't forget to bring those juices for the nurses!
Rest in peace.

amberhawk3 said:Because it's a controlled substance, he needs a psychiatrist to write the prescription.

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Actually, a psychiatrist provides the recommendation, but the VA issues the actual prescription, which you then fill at a pharmacy by showing your ID and insurance card.
From what I gather, he already has his recommendation, but the VA has to issue him a new prescription every single week. He should just sit down and work out a solid plan with his doctor to handle this.

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Why don't you just give your doctor a call and lay it all out for them? If they write you a physical prescription, someone can always swing by to pick it up and have it mailed straight to your house. Plus, if you sign off on your ID, they can easily set up a recurring order so you can just grab what you need at the pharmacy whenever it's time.

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Reading through your posts feels like reading about my own husband, except his episodes aren't every single night and they aren't quite as intense as what you guys are describing. Plus, he’s got a twin brother to deal with too.
His episodes vary wildly—one minute he's shouting about needing to evacuate because China dropped an atomic bomb on Iraq, the next he's frantically waking me up to warn me there's a stranger sitting at the foot of the bed (honestly, if I hadn't died right then, I'll never know). Sometimes it's just him joking around or laughing at some high school movie, or even trying to "reboot" computer memory since he works in IT (he's an ITevac). Most of the time, it’s actually pretty hilarious; I usually just tell him, "Honey, you're dreaming again," and he just rolls over and goes back to sleep. We've been together for 12 years now, and it's actually tapered off to maybe just a few episodes a year. Back when we had our son, he used to bolt upright in his sleep, panicking and feeling around the bed with his hands to make sure the baby hadn't fallen out, even though the kid has never even slept in our bed.
I suspect the root cause might be mild ADHD or perhaps the trauma from losing his father under such tragic circumstances when he was only 17. Another thing is that he describes his dreams as being incredibly vivid—almost like full-length movies—which he insists on recounting to me the very next day. It seems like he has this deep-seated need to get those stories out of his system.
In his everyday life, he’s actually a very easygoing, cheerful guy.
We haven't really considered seeking professional help before, but looking at how intense your experiences sound, maybe you all should. I know there’s a specialized sleep disorder center at a major hospital in our area that is supposed to be top-tier.
Good luck!

urbanharbor15 said:My dear mom would have turned 64 tomorrow. Tomorrow also marks exactly one month since she passed away.

I thought I was holding it together, but as time ticks by, this void just keeps growing—this heavy sadness knowing we lost her forever. It still hits me out of nowhere, catching me completely off guard. At work, on the subway, even while brushing my teeth... it just strikes.

Damn this disease.

Eventually, you accept it and learn how to live around the hole they left behind. Life changes forever, but you keep moving.
Hang in there. Honor her memory, let her rest easy, and give yourself all the time you need to grieve.

ruggedmarlin2 said:My mom is starting chemotherapy for ovarian cancer: liposomal doxorubicin. Apparently, it's this cutting-edge chemo designed to target just the tumor, but she’s handling it terribly. She's been dealing with constant nausea for two weeks straight since her first dose... even Zofran injections aren't doing a thing, and she's throwing up two or three times a day. All she can manage is sipping some milk or tea, provided she doesn't toss that back up too. She’s incredibly weak; the only time she’s really getting up is to go to the bathroom. I should mention things were already heading downhill before the chemo started—fluid buildup in her abdomen was pressing on everything, including her stomach, causing vomiting. The chemo seems to be working slightly because there's less fluid buildup now, but she’s just so frail and constantly feels sick. We're wondering if anyone else has used this specific chemo and dealt with similar side effects. Thanks.

Try popping popcorn on hot air (you can grab an air popper at a place like Target), or try crushed flaxseed soaked in lukewarm water. Let it sit for 30 minutes to an hour, then strain it and drink the liquid. You can also mix the flaxseed into dairy-free cream cheese and eat it.
Coca-Cola, ginger, anti-nausea tablets... everyone reacts differently, so see what works.
To make sure Mom doesn't slide into cachexia, definitely ask her Oncologist to write a prescription for Ensure or Prosur shakes. Those are meant to replace a full meal in terms of nutritional and caloric value. To start, you might just want to buy a pack at a local pharmacy yourself.
One more thing—cannabis helps a lot of people with nausea. So... there's that.

Rachel Williams said:Thank you all. It’s been a week since we laid her to rest, and I’m still figuring out how to live without our daily chats and all those little things that filled my life. 🙂

I just wanted to share one last "medical gem" on this thread—about a day and a half before she passed, they discharged her from the lung hospital at Rockefeller with this claim that she wasn't a candidate for inpatient care because she was supposedly "doing too well," and they didn't have enough beds for oncology patients. (Which turned out to be a total lie.) Normally, I’d have plenty of ammunition to go in swinging, arguing, and filing lawsuits against at least three different medical facilities in New York City over their mistakes, but nothing can bring my mom back. I’m trying to find some peace in the fact that she avoided her biggest fears: dying in a hospital bed and losing her mind to brain metastases. She isn't suffering anymore. Besides, I know Mom would want me to take care of myself and protect the baby I'm carrying. Getting worked up and stressed during a high-risk pregnancy is the absolute last thing I need right now.

To anyone joining this thread later, I’ll tell you this: fight for yourselves and your families. Don't hesitate or worry about offending someone; insist on every single right you have.

Hang in there, dear. Stop by whenever you can. Let us know when the little one arrives.

urbanharbor15 and Rachel Williams, please accept my most sincere and deepest condolences.
You did everything right. You should be proud of yourselves and of your mothers. Dale gave you the final lesson of life—the passing of a parent, the loss of a mother. With that, your journey into adulthood is complete. It’s only when we lose our parents that we truly grasp the realization and maturity required to feel whole in this life.
Honor them now in peace and move forward carrying those beautiful memories with you. That is what they would want, and it's what they deserve.
May they rest in peace, and I wish you nothing but peace in your hearts.

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ruggedmarlin2 said:Hi there,

I was wondering if anyone dealing with ovarian cancer has visited the clinic in St. Jude? Looking at their website, they seem mostly focused on organs like the lungs, liver, or pancreas... but we’re looking into that laser surgery for abdominal tumors caused by ovarian cancer progression. Just trying to gather some info since the consultation itself is pretty pricey, so if anyone has dealt with a similar situation, I'd really appreciate it.

I can't speak to the clinic in St. Jude, but regarding the longest survival case for ovarian cancer, I actually found out about it right here on this forum. A user was posting about her mother, who I believe was sent from San Francisco to Aviano for treatment. Try searching the forum for "ovarian cancer" and "Aviano"—they are specialists for that diagnosis, so her posts should pop up. If I recall correctly, she was in remission for nearly ten years before passing away from something else entirely.
Good luck!

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