General Discussion
Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsUPDATE: An update on my sister's cancer diagnosis
First, my great thanks to all for the warmth, prayers, vibes, light and good thoughts that I received through DU. I love my DU family and I know that I can always come here for sensibility, compassion and friendship. Know that I appreciate that.
I had posted about my sister's illness here:
https://www.democraticunderground.com/10029241288
We have now received the diagnosis and results of the PET scan and it is not good, unfortunately. The cancer is Stage IV colon cancer and it has spread to some areas of the chest and some areas of the abdomen. She has already had surgery to remove the actual tumor. The oncologist feels that, with proper treatment, she has some time left. We are grateful for that.
We are beginning the process of trying to figure out how we can afford to get her the treatment that she needs to prolong her life. Know that I, and all members of my family, are tenacious and dedicated and strong. We will go down every rabbit hole, we will call every phone number, we will leave no stones unturned as we try to get my sister the help that she needs.
I find it ironic that the timing of this coincides with the release of the details of Trumpcare. If I wasn't convinced before that Republicans hate poor people, well, I am now. And I was convinced already - that fact was merely clarified again with the release of the details of Trumpcare.
I am going to keep saying this until my last breath - NO PERSON, whether wealthy or poor, whether Black or White, whether male or female, whether young or old, whether good or bad - whatever - should EVER be denied care to sustain their life when care that would sustain that life exists. What in the hell do we have medical research for if not to sustain quality of life?
We need single payer now. We need to stop accepting anything less. We must demand it. We must be the vehicle for change. We must be the force. And we must not stop until we get every single person in America covered for health care. Not access - but actual coverage.
I invite you each to stand with me. I am in Texas and my fight is going to be a hard one. But I will not be silenced. I will be vocal, and I will be insistent.
I know my family is certainly not the only family facing this. I know there are many. It makes me so sad and it hurts a great deal knowing that a whole political party - actual human beings - don't care, hell, don't even acknowledge, that there will be needless suffering and pain. Callous assholes.
But rest assured, as our numbers grow, so shall our voices for change. It will take time. But we will win. We will win because we are never going to stop until we get single payer. Because it is the right thing to do.
And I hope that when those times come that I need a shoulder to cry on, someone to set me straight with factual information, or those times when I just need to know that others understand - that I can come to DU for that. I know I can count on that.
I thank you all for the fact that you care about one another and that you care about humanity. I cannot believe that I live in a world where some people do not care. THAT is what makes us different!
With love and friendship,
Hamsterjill
Timmygoat
(779 posts)My love and prayers go out to you and your family, hopes for a good outcome for your sister.
hamsterjill
(15,220 posts)Hugs!
Tanuki
(14,918 posts)every step of the journey. We will fight for high quality, affordable healthcare for your sister and for all. I don't understand the forces of evil in our government who would not want to give her a fighting chance to be restored to health, but they cannot be permitted to win this. Too many precious lives are at stake.
hamsterjill
(15,220 posts)I'm counting on my fellow Democrats not only standing strong on this issue, but increasing our numbers and making a difference on this issue.
Thank you very much.
Blueplanet
(253 posts)hamsterjill, I am very sorry to hear about your sister's illness.
I just cannot believe there are human beings on this earth that would knowingly deny others health care when it is in their power to provide it. Tell me, if they saw a child who needed to be resuscitated, would they just walk away? I have never met a human being who would not do all that they can to save that child.
hamsterjill
(15,220 posts)I think there are some people who actually would just walk away. I know I couldn't, and knowing our own feelings makes it even harder to believe that someone else could be that cruel.
I am convinced that these Republican thugs have no empathy or compassion. As to Republican voters, it will only be when something like this affects them personally that they even begin to understand. They cannot extrapolate and understand what others go through.
calimary
(81,231 posts)They proved it during bush/cheney. BY cheney in particular. Remember when he sneered and scoffed at the whole idea of empathy? Even the very word "empathy." Laughed at it. Openly. As though empathy somehow means weakness or stupidity or naivete. Empathy is one of the highest emotions one can feel. Empathy means YOU yourself HAVE walked in the other guy's shoes. You know that pain because you've faced it, yourself, personally. It's different from sympathy - where you don't share that loss or that grief (at least not yet) but you still feel compassionate toward those who have to endure it.
Empathy is one of the most elevated, most highly-evolved, most sincerely saintly feelings you can have. It is NOTHING to be sneered at. I knew I despised that vile disease of a man when he did that.
Btw, hamsterjill, sending you lots of love and strength from all of us at casa de calimary. Thank you for sharing this journey with us. I wish your family success in your search for help for your sister. A neighbor of ours who suffered a personal loss had a perspective that I've never forgotten. "Any problem above the dirt, you can do something about." I interviewed the late Jonathan Winters once, and he talked about that, too. He called it "the dirt nap."
hamsterjill
(15,220 posts)Empathy is, in my opinion, the very stark contrast between Republicans and Democrats. We have feelings and understand that others have feelings. They don't care about feelings ("feelings" incorporating pain and suffering, too).
I love the quote and perspective and I will be sharing that with my family. Must've been a hoot to get to meet Jonathon Winters!!!
Thank you!!!
democrank
(11,094 posts)and remember people care. I'm sending every bit of positive energy I can gather. My best to you and your family.
hamsterjill
(15,220 posts)Hugs!
furtheradu
(1,865 posts)Yes, You can count on DU. Let us know how/when You need us.
Please remember to take goood Care of YourSelf.
Holding the Light for Y'all.
hamsterjill
(15,220 posts)n/t
Sugarcoated
(7,722 posts)I will hold her in the light....
hamsterjill
(15,220 posts)It's not easy, right?
Thank you.
Sugarcoated
(7,722 posts)I learned a few big life lessons. First, you can't make someone do anything they don't want to do. You can't save someone you love through shear will. Some people are open to advice, some people face these things head on, some don't and it's their journey. Secondly, I learned life is all about love.
renate
(13,776 posts)How upsetting and stressful.
It's terrible enough that you have medical decisions to make and medical concerns to worry about. It's beyond horrific that money has to enter your thoughts AT ALL at a time like this. This cannot be called a civilized country until a person's prognosis is completely unrelated to their socioeconomic situation.
My very best wishes to you both, and to your whole family, at this incredibly difficult time.
hamsterjill
(15,220 posts)Thank you. I agree with every word you said.
LeftInTX
(25,291 posts)It is doubly painful to have to go through this along with gutting healthcare.
There is going to be a Medicare for All Rally on July 29th-July 30th at Hemisfair Park. Yes there are other Texans who want single payer.
We've also been protesting the AHCA including "die ins" in front of Will Hurd's office and a rally in front of Cruz's office.
You are not alone.
hamsterjill
(15,220 posts)Can you send me the details for the rally at Hemisfair? Which group is handling the protests?
Glad to see activism happening!!!!!!!!
MojoWrkn
(139 posts)you'd be surprised how many people will donate! My adult daughter was diagnosed with Systemic Scleroderma (little known disease, but fatal) and her Rheumatologist told her "5 years at most"! She has 3 children, the youngest being 10 at that time. Well, with lots of research (and a bulldog of a sister who is a nurse) we found the best treatment for her at Northwestern Medical Center under the care of Dr. Richard Burt. She had an autologous stem cell transplant (the stem cells were her own) last July and she's doing wonderfully! We set up a page called HelpHope Live and raised about $6,000 for her and did fund raising in our community. Thankfully, her husband's employer sponsored insurance paid for 80% of this $250,000 procedure. She still has some bills but she's very optimistic and also sooo grateful to have some quality of life again. The people in our community also did a Food Train (I'm not sure that's the right term) but women signed up to prepare meals for the family so after her transplant, nobody in her house had to cook. Most of the meals could be frozen and the meals lasted about 5 weeks. Reach out to your community and your church. People are always ready to help! Best of luck to your sister and family and I'll add you to my prayers.
This is the reason my entire family is fighting with everything we have against trumpcare! My daughter now has a pre-existing condition and would never have been approved by her insurance if this bill is passed. There are many others awaiting the same treatment at the same expense and I hope they receive their treatment before this horrid bill goes through.
LeftInTX
(25,291 posts)This is very encouraging.
MojoWrkn
(139 posts)Chicago to seek treatment from Dr. Burt! The procedure is very time intensive but the actual transplant took seconds. My daughter underwent a weeks' worth of chemo, lost her hair and some weight, prior to getting her stem cells back! We met some wonderful people while there and many of them were being treated for Multiple Sclerosis. Dr. Burt also treats for Lupus, CIDP, Stiff Person Symdrome, Chron's Disease, and others. This is his life's work and he began in KC by treating kids with cancer.
hamsterjill
(15,220 posts)It's amazing what happens when people come together.
We will certainly consider a gofundme request if we aren't successful in some other areas that we are researching right now.
That truly IS encouraging about the stem cell treatment, and I am glad she was able to receive it.
Appreciate your kind thoughts.
elfin
(6,262 posts)If you have a way to explore and get into clinical trials, that may help both with longevity and costs.
My sister-in-law made extensive use of these with a very different form of cancer and extended her joy-filled time on Earth for at least 5 years more than the docs said to expect.
How i hope this is a path for you and yours to make the good times last and last....
hamsterjill
(15,220 posts)Her oncologist is trying to get her into one. The search is underway (we confirmed that the doctor has already made the inquiry) and now we wait.
I am grateful that your sister-in-law benefitted from a trial, and although 5 years certainly is not "enough", I am grateful that she had that time.
Thank you for the kind thoughts!
spanone
(135,830 posts)catrose
(5,065 posts)My son has cancer too--not at the same stage as your sister--but we both are badgering all the representatives we can find.
My two bits of navigating the medical minefield in Texas:
1. While Texas allows medical marijuana only for one form of epilepsy, hemp oil (or cannabadiol) is legal and available in People's Pharmacy. It has CDC but not THC and can be effective for pain and anxiety.
2. My insurance company decided that a certain lab test (which I've seen in my own records for more than a decade) is experimental and refused to pay. The doctor's office suggested calling the lab and asking for a discount. That was hard for me, but I did, explaining the situation and asking if there were any discounts that I would qualify for. They gave me a 20% reduction in the bill for paying right then. It was a small bill; so that was possible. I didn't know they would do that if you just asked.
I'm wishing your sister joy and ease and special times with family for as long as possible.
hamsterjill
(15,220 posts)That's how we help one another!
Thank you for your kind expressions. My best wishes to you and your son!
catrose
(5,065 posts)hamsterjill
(15,220 posts)Hadn't seen you on DU in a while!!! Glad to reconnect.
catrose
(5,065 posts)Sometimes it's just easier to stay gone...but I've been reading!
mrmpa
(4,033 posts)one is able to go on social security disability which then allows the person to be on medicaid. I mention this not knowing what type of insurance your sister has. edit here: read your previous post, you can be on medicare & medicaid at the same time. Medicaid would be her supplemental insurance. See a hospital Social Worker.
My brother was diagnosed with cancer, he received social security disability and medicaid which was a supplemental to his insurance. He is now cancer free and back to work and covered by his employer's insurance.
Also while on SSD, student loans he had signed for his oldest son were written off.
Also what State are you in?
MojoWrkn
(139 posts)My daughter has not been able to work for about a year and a half (she's a nurse, so is her sister). It took about a year to get her qualified for SSDI! Funny how we can all pay into that but have to fight to get it as help!
mrmpa
(4,033 posts)that gets you SSD quickly. My brother's case, 3 weeks.
MojoWrkn
(139 posts)intensive chemo treatments prior to her transplant! There are lots of variables to receiving SSDI - not just the DX.
Hell Hath No Fury
(16,327 posts)Breast cancer returned and has metastasized -- it's terminal, so my cousin is simply living with cancer as long as treatments will allow. She is in North Dakota and got herself on Medicaid. She had to drop her two part-time jobs to qualify and has no assets outside her home, but it worked and she is getting great, aggressive care. If you can get your sister on Medicaid and in with a teaching hospital for treatment, that would be a good scenario.
All the best to you, her, and the family.
hamsterjill
(15,220 posts)Definitely trying for Medicaid. She lives in a rural county without a teaching hospital unfortunately. I'm in San Antonio and checked here but most programs at the teaching hospitals are limited to county residents. We will continue to explore all avenues, including re addressing any doors that close.
My heart goes out to your cousin and your family. Stay strong.
gademocrat7
(10,656 posts)hamsterjill
(15,220 posts)Hugs!
Ligyron
(7,632 posts)and I'm not at all convinced they can, it will be years before most of it goes into effect.
Many who are sick now will be in a better place by then.
mvd
(65,173 posts)Wishing your sister a full recovery.
My dad has stage IV colon cancer and is still alive after 4 years. It is a hard road, but there is hope. Although he recently had news that the cancer spread to a bone, he is getting radiation for that and will continue afterward getting treatment for the other cancer. Overall he is still doing pretty well. Don't give up - it can be beaten!
hamsterjill
(15,220 posts)I appreciate the hope!
And I wish your family all the best!
mvd
(65,173 posts)Hope to hear good updates from you in the future.
Nay
(12,051 posts)been on experimental immunotherapy and somehow has already lived past the date when 100% of victims die. The cancer has been beaten back enough that she is actually able to enjoy a bit of travel. That's unheard of for her type of cancer. There is always hope for at least a longer timeline for your sister!
hamsterjill
(15,220 posts)Appreciate the info and my best to your friend's continued quality of life.
Different Drummer
(7,614 posts)hamsterjill
(15,220 posts)Thank you.
B Stieg
(2,410 posts)mgardener
(1,816 posts)How can the Republicans care more about a fetus then a living breathing human being?
They can't and they don't.
They should be called the party of death.
dflprincess
(28,075 posts)They care about controlling women, it's never been about the "sanctity of life" for them.
smirkymonkey
(63,221 posts)I wish the best for your you, your sister and your family.
hamsterjill
(15,220 posts)Hugs!!
Marthe48
(16,949 posts)Be sure to call (or have her caretaker call) your sister's doctor if her meds aren't working, just for any questions at all.
My daughter sent me information about PAN foundation. My husband had good insurance, so I didn't explore this option. They might offer some help for some costs for your sister's care.
https://panfoundation.org/index.php/en/patients/assistance-programs
Anderson is in TX. and maybe worth looking at:
https://www.mdanderson.org/research/departments-labs-institutes/departments-divisions/experimental-therapeutics.html
Here is a link to National Cancer Institute:
https://www.cancer.gov/about-cancer/treatment/research
I wish your family the best.
hamsterjill
(15,220 posts)We are trying every avenue. I appreciate you taking the time to put that information together for us!
Marthe48
(16,949 posts)totodeinhere
(13,058 posts)hamsterjill
(15,220 posts)N/t
irisblue
(32,969 posts)hamsterjill
(15,220 posts)And my entire family appreciates it. Thank you.
Ms. Toad
(34,069 posts)I would encourage you, though, to leave space for the possibility that what is best might be to make the most of the time that remains.
Stage IV colon cancer is often aggressive & the treatment more so. Your sister could spend most of what time is left more ill from the treatment than the cancer, without gaining any quality time. Get a doctor who will be honest with her (doctors hate to tell you that there is little go do, hate to lose patients, and in their desire to fix what's wrong often overestimate the amount of quality time gained by treatment and underestimate
My brother died 13 months ago, after a stage IV diagnosis approximately a year earlier. He had relatively aggressive treatment - with perhaps 2 months of quality time between diagnosis and death and several months of feeling worse from the treatment than the cancer itself. Other friends and acquaintances have died more quickly, but enjoyed relatively more quality time by choosing palliative care. Everyone has to make their own choices, but Stage IV colon cancer is not something you generally recover from, no matter what kind of care you have. Make sure she has the space to make a reality-based decsion. That may be fighting tooth and nail - or perhaps not. But the choice ought to be based on a realistic assessment of what is likely to follow each choice.
hamsterjill
(15,220 posts)She is still digesting all of this, of course. And we need a little time to get all the facts, etc., go back and forth with the doctors. As you indicate, it is each person's choice and I will support any decision she makes.
My aunt developed lung cancer at the age of 84, had one chemo treatment which gave her horrible hives. She said "no more" and I fully supported her choice. Suffering sucks.
YCHDT
(962 posts)TrishaJ
(798 posts)CaptainTruth
(6,589 posts)Stuart G
(38,421 posts)niyad
(113,282 posts)family is here for you.
lunamagica
(9,967 posts)Solly Mack
(90,764 posts)I wish it were more.