I will try and give as many detail as I can. I AM NOT ASKING FOR MEDICAL ADVICE. Only on how to handle this situation. Here goes...
One year ago, my grandmother was diagnosed with Pancreatic Cancer (Yikes!!) She went through chemo and radiation (surgery was not an option due to her badly diseased liver) This February her CT showed that her tumor shrunk. Since then she hasn't done chemo or radiation. Earlier this month, we rushed her to the ER with severe abdominal pain and extreme fatigue. Turn out her hgb was at a 7 and needed a blood transfusion. An endoscopy was done. Esophogeal varices was discovered but there was "no evidence of an active or prior bleeding" She was discharged with meds for portal hypertension. Well she's back in the hospital (admitted 6/28) with a hgb of 5 . They gave her more blood. They were going to perform an endoscopy and a colonoscopy but cancelled it. AND I DON'T KNOW WHY! Instead we got, "we suspect she's bleeding from her tumor" (btw the tumor is in the pancreatic duct not necessarily in the pancreas) and there is nothing they can do. They SUSPECT. I'm sorry but their hunch/theory is just not good enough!! I don't need them to tell me she's terminal, I'm fully aware of that. But do they just discharge patients from just suspecting that the tumor is where the bleeding is coming from?? I'm angry because they do nothing to definitively find the source of her bleeding. Do we just stop searching because she's eventually going to die? By discharging her they are telling me, "hey, she's gonna die anyway, why look for an answer" It's breaking my heart. I just want to know how I can get these doctors to not give up on my grandmother. The cancer has not metastasized and I assure you she's not ready do go. But sending her home with internal bleeding is going to kill her. Please anyone that could advise me on how to handle this situation. I'm beyond desperate
P/S...my grandmother only has medicare which means she's responsible for 20% of her bills. Her chemo,radiation, CT's, blood work etc.. is very expensive and we try paying as much as we can. As you can imagine we owe lots of money. Could that be the reason they cancelled the endoscopy and colonoscopy?? Can they stop treatment when someone isn't able to pay even though she's clearly has internal bleeding? This isn't an broken finger where she can just go follow up with an orthopedist after discharge. SHE'S BLEEDING INTERNALLY FROM SOMEWHERE AND THEY'RE NOT FINDING THE SOURCE!!!
I'm sorry that you are going through this but I can see why the dr's would not want to investigate further. Obtaining an answer through unpleasant means when the answer isn't going to change the outcome in anyway seems a bit futile. The risks outweigh the benefits (or so it sounds by the brief history you have given us) in this case.
I am sorry about your grandmother. This topic gets me choked up every time. Your grandmother is lucky that she has someone like you to advocate for her and not take "NO" for an answer. At the same time, I hate to say it, sometimes "no" is the answer. It's a sad part of the life cycle. My children are young, but I hope to have everything in order (which I plan to do, but keep putting off bc I'm young and will live forever) so they won't feel like they have so much weight in my matters. Like I said, this chokes me up because I know I'd love to be around forever for my kids and eventual grandkids. I know they (especially my daughter who is glued to my heart) will NOT want to let me go. I think now would be the time to have a serious, heartfelt talk with your grandmother and start preparing yourself emotionally for what is bound to happen sooner or later. I think I might give my own children a "three strikes and you're out" rule so they don't feel like I'm giving up and abandoning them when/if faced with this type of situation OR that they're giving up on me, but if more than one (or two) doctors says the outlook is grim then so be it. Trust me, at the age your grandmother must be, you are the reason she is living. I'm seriously tearing up thinking of my daughter not being ready to let me go when it's my time. Mama's and grandmothers live to protect their young so leaving them heartbroken would be a sad, sad way to go. I hope you can find peace because when you can so will she, and what better way to go?
Trust me, at the age your grandmother must be, you are the reason she is living. I'm seriously tearing up thinking of my daughter not being ready to let me go when it's my time. Mama's and grandmothers live to protect their young so leaving them heartbroken would be a sad, sad way to go. I hope you can find peace because when you can so will she, and what better way to go?
While you are certainly welcome to discuss your own feelings about growing older and how you might approach a life-threatening health crisis, I think it is presumptuous for any of us to assume how OP's grandmother might feel.
OP's profile lists her age as 28 ... grandma could be anywhere from 68 to 98 ... and I think there's a big difference between the two.
And while we may assume that there is great love and attachment in OP's family ... I find it unsettling to have it stated that the OP is "the reason she (grandma) is living". This statement precludes grandma having her own life. Maybe she still works. Maybe she has interests beyond her family. For goodness sake ... she is a person in her own right, beyond her role as OP's grandmother!
And that is why choices about treatment need to be made by the patient in consultation with her medical team.
It does sound like you might need to discuss this with the physician (if allowed by your grandmother). If her hgb is that low, I would suspect there would be signs if it was a GI bleed - if there is no signs of bleeding and / or they have performed an OB stool on her that was negative, the chances that there is a severe bleed in the GI tract seems very minimal, making a colonoscopy an unnecessary, uncomfortable procedure your loved one would have to go through.
If her H&H is that low they aren't going to want to do any invasive procedures that may cause more bleeding. I assume her platelets are probably low too.
i adored my grandmother and hoped she would live longer, too, and told her i was po'd she wouldn't be around to see my (then very small) children get to know her, and she said, "well, that's just too bad, isn't it?" and we laughed, because, really, what else was there to say? at that point most of the family did not know her terminal diagnosis, and i was the only one who did who was able to talk to her about it. she had hospice care at home, and we had good times together until she died. she outlived her doctor, refused chemo and surgery and rads, and was at home. i would have killed myself rather than make her suffer from all that stuff when it wouldn't have made a bit of difference in the outcome, and actually would have shortened her life as well as made her more miserable in it. what did she not get? she didn't get nausea from having extra fluids, so her gut emptied and she didn't vomit. likewise, her chest was dry so she didn't cough or feel short of breath. her kidneys gradually shut down, so she didn't have to get on and off a bedpan, suffer a catheter, or have skin breakdown from urine. she didn't suffer hunger or thirst, as the normal chemical changes that happen with body shutdown suppressed those. she didn't have pain, we made sure of that. what she did have was cigarettes-- you think i was going to tell her no to that? she'd have spit in my eye. god, i loved that woman.
the night before she died as she was slipping away, i laid down beside her and held her hand over her heart, and told her i would never forget her, i would tell my children about her, and goodbye, goodbye, goodbye. she closed her eyes and died early the next day without ever waking again. i think i let her go in peace and hope to god someone does that for me. you can do the same for your grandmother. you can.
you know what? at some point, the word "futile" comes into play. consider what would happen if they did, in fact, identify a source of bleeding in your grandmother (and there is by no means a certain way to do that, considering all the other reasons she has for dropping her h&h). what would you have them do? surgery? cut her open with certain risks of anesthesia, no chance that she has enough serum proteins to heal, no decent liver to metabolize pain medication, no place to drop her diaphragm to breathe easily so she'll be intubated, an ng tube so her esophageal varices will really be at risk for a huge bleed? that's nothing you want to remember as your last images of her.
dear heart, death is not the worst thing that can happen to your grandmother, and i suspect she knows this. remember, she has seen her grandmother die, and her parents, and maybe siblings and contemporaries, and she is not having a good time now. it is very possible that she is putting on a brave face for you, knowing that you are decompensating daily as she is making her final journey, but has told her caregivers not to further decrease the quality of life she has left. i know you are in agony about losing her. try not to make it all about you. it's all about her now. talk to her honestly. you won't scare her, she knows already. these are your last days with her-- do you want them built on frantic futility? is that how you want to remember things? do you want things to go unsaid? no, of course not.
get hospice in place immediately. not only will she be better off and suffer less, they will help you, too. really. you know enough to know it's the right thing to do; let someone care for you, too, as you experience what may be your first significant death, but will surely, surely, surely not be your last. keep your heart open; even pain passes, and you have a golden chance to have a better memory to hold there when it does.
She went through chemo and radiation (surgery was not an option due to her badly diseased liver) This February her CT showed that her tumor shrunk. Since then she hasn't done chemo or radiation. Earlier this month, we rushed her to the ER with severe abdominal pain and extreme fatigue. Turn out her hgb was at a 7 
and needed a blood transfusion. An endoscopy was done. Esophogeal varices was discovered but there was "no evidence of an active or prior bleeding" She was discharged with meds for portal hypertension. Well she's back in the hospital (admitted 6/28) with a hgb of 5 
. They gave her more blood. They were going to perform an endoscopy and a colonoscopy but cancelled it. AND I DON'T KNOW WHY! Instead we got, "we suspect she's bleeding from her tumor" (btw the tumor is in the pancreatic duct not necessarily in the pancreas) and there is nothing they can do. They SUSPECT. 
I'm sorry but their hunch/theory is just not good enough!! I don't need them to tell me she's terminal, I'm fully aware of that. But do they just discharge patients from just suspecting that the tumor is where the bleeding is coming from?? I'm angry because they do nothing to definitively find the source of her bleeding. Do we just stop searching because she's eventually going to die? By discharging her they are telling me, "hey, she's gonna die anyway, why look for an answer" It's breaking my heart. I just want to know how I can get these doctors to not give up on my grandmother. The cancer has not metastasized and I assure you she's not ready do go. But sending her home with internal bleeding is going to kill her. Please anyone that could advise me on how to handle this situation. I'm beyond desperate 
Kiwidanni
55 Posts
I'm sorry that you are going through this but I can see why the dr's would not want to investigate further. Obtaining an answer through unpleasant means when the answer isn't going to change the outcome in anyway seems a bit futile. The risks outweigh the benefits (or so it sounds by the brief history you have given us) in this case.