mother has cancer and I have so many questions

Hi. I'm an MD, and work often and closely with the palliative care team and hospice services. There's some variability in terms of the quality/quantity of care, but there's also a lot of congruency in terms of goals and functions. First, let me say that I'm very sorry your mother and you are going through this. It's a terrible situation, and fraught with emotions of all kinds. Please, at no point, ever feel guilty or shameful of anything you're feeling: be it not having answers, or energy, or time, or strength. Anything. I am very glad that you're able to write your questions and experiences out, and encourage you to do so often, even if it's to yourself. I'll try my best to address your post and answer your questions. It sounds as if her recent hospitalization has resulted in a workup for cancer, and that the results of her testing/imaging have been explained in such a way as to suggest metastatic cancer. This is always bad, no matter the cancer type. I could go on and on in detail about the staging of cancers, but the bottom line is that metastatic cancer is always, always bad. Biopsies often take time. This is normal. They're not computerized lab tests: they're actually prepped and a pathologist actually looks at them and tries to figure out what's going on. There are two key pieces of information that physicians look for: 1) is the sample satisfactory for evaluation (is there enough stuff to look at, and was the stuff prepped in such a way to allow a pathologist to figure out what's going on?), and 2) are malignant (cancerous) cells present? Gross tissue biopsies are almost always satisfactory for evaluation. Be aware that the absence of malignant cells does not mean the absence of cancer. It could be that the sample taken doesn't accurately reflect what's really going on in all the other areas of her body. Be prepared to accept the diagnosis of cancer even with negative biopsies. This may strike some people as wrong, and it might to you as well, but I hope it will make more sense by the end of this response. For it certainly sounds like her health has suffered, and suffers still: whether or not this-or-that test result is positive or negative, low or high, she, as your mother, is suffering: she has masses in her lungs, her kidneys are failing, she's weak and in pain. It's clear to me that you've cared for her and still care for her very much, and I'm glad to read your questions for what they are: not just about her diagnosis, but about her. Not just about her, either, but about you. My mother's health hasn't been great for the majority of my life. She suffers from a number of ailments, but the big two are diminished kidney function and diabetes. Prior to the hospitalization, she had a surgery planned for this Friday to put in a vascular access in her arm for dialysis in the future. She is also moderately disabled, unable to walk or stand for longer then a minute or two at a time. I have lived with her for years as her caretaker, cleaning and providing meals and driving her to doctors appointments. My sister and the doctors seem to be working under the assumption that if this is cancer, it is probably too far advanced and her health in too poor a state to treat. That treatment might make her feel worse and make the end of her life miserable. Dialysis is rough. Apart from the actual procedures that need to be done for access, it's hard on the body and mind. Yes, without dialysis, people who have failing kidneys will die soon. Sometimes sooner. Sometimes soonest. Yes, some people do very well with dialysis over a very long period of time. Some physician, I hope, will address this along with her other medical issues and what her goals of care are, soon. Cancer can be treated with chemotherapy or radiation therapy, or both. Drugs are processed by the liver and/or the kidneys. If either or both are damaged or not working right, chemotherapy might make things worse. Chemotherapeutic drugs sometimes causes damage to organs which have otherwise been healthy. So, too, can radiation therapy cause more harm than good. You can destroy good cells as you're trying to kill the cancerous ones. Radiation therapy is often not an option in the case of metastatic cancer, though sometimes it is used for palliative purposes. I have a lot of questions. The doctor told me that to even find out if fighting the cancer is possible that she will have to be able to leave the hospital and walk into a cancer clinic and see an oncologist. Does this seem normal? She's at the biggest university hospital in my state. They have a huge cancer center. Are they not able to have an oncologist come see her? Essentially, yes, this seems normal. She needs to be able to follow up with an oncologist, and if radiation or chemotherapy is indicated, she needs to be able to make it to the treatment center. It does not sound like radiation is an option based on the what you wrote, but I'm not an oncologist. Chemotherapy is often given in a supervised medical center or outpatient infusion center. An oncologist could conceivably make a visit to her. A question to consider is: would this change anything? If an oncologist visited her, and deemed that yes, chemotherapy is an option, but your mother could not make it to the treatment center, how would that be different from being told that there's no chance of fighting the cancer (and here I'm not implying that there is no difference, but rather suggesting that this point be considered; I understand that there's a mountain of difference in being told that there's a chance, no matter how small, of getting better versus being told that there's no chance). At the same time, consider what it would mean if she were not able to walk into a cancer clinic. What difficulty, physically, psychologically, and spiritually would be involved in her going from place A to place B and back? She is not alone in her suffering, and as anyone who loves another would attest: no one wants to cause discomfort to another, or feel like a burden to them. Your mother may have this on her mind when it comes to your love for and help to her. And there should be no guilt or shame for it, for either of you. Given all of this, if I'm reading things correctly, there seems to be an issue with having an oncologist see her while she's in the hospital. This does not make sense to me: there is no reason not to consult an oncologist if there's concern for cancer. It is well within your rights to demand a consultation with oncology, regardless of what her primary attending is saying. Do not be concerned about upsetting her physician or the medical staff: they're there to serve your mother. They're there to serve, by extension, you. If I'm reading this correctly, and this is truly the case, and you have reservations or feel like your requests might adversely affect your mother's or your relationship with the medical staff, MeMail me for suggestions on different routes you could take. The doctor told me that medicare will cover all costs of hospice care except room and board. Doing research on the internet suggests that a family member who lives at home would be the primary care giver for at home hospice. I.. I don't know if I can do that. My job is part time, I have no leave or vacation time I can use to take care of her. I am sure I could apply for FMLA, but the problem is that I have substantial debt, both student loans and credit card debt. My Mother and I live a very codependent relationship. Our combined income allows us to pay all of our bills, but we need both of our incomes in order to do it. I can't afford to take unpaid FMLA leave. I can't be at home all the time to take care of her, I have to work. What are our options? I tried to google what options a person has if they don't have a family member who can care for them. Unfortunately a lot of the results on the web about hospice care is the same regurgitated information. Who do I talk to about all this? Is there a person at the hospital who can help me navigate this or who I can direct questions to? Would this be her hospital social worker? At least where I practice, what the doctor says is true for home hospice. Hospice would cover medications, show you what to look for and when and how to administer hospice medications, and have a provider available, but that provider would not be present for much of the time. It's possible to arrange for skilled nursing or an aide, but oftentimes people have to pay out of pocket to have any home care coverage for a significant part of the day. The person to ask such questions about would be someone with case management, who would be familiar with such issues and may be able to arrange some combination of services that would allow for your mother's care, with your schedule in mind. My sister is already full time caregiver of her spouse, and won't be able to care for our mother. I feel very lost. Despite the tone of this post, I am having a very difficult time dealing with this. I have been attached to my mother's hip my entire life. Going to visit her in the hospital is rough. She seems under the assumption that I will be able to take care of her. I feel horrible and selfish that while I do want to care for her.. that I don't want the responsibility of wiping her butt after she goes to the bathroom. I feel bad that I have to focus on my future and my financial stability instead of caring for her. I feel like a horrible daughter. I feel like I can't be the daughter she deserves. Prior to this, I was already heading down a dark path toward reoccurrence of depression. I should probably talk to someone, but I don't know if I have the energy to take care of myself while all my thoughts circle trying to worry about caring for her. Who can I talk to who can help me? I've been in a similar situation, and you have my deepest sympathies. It is impossible to deal with such adversity with any measure of ease, but you have my admiration and respect, and I think you should be commended for not only having the heart and mind of asking for help and asking questions for your mother, but for yourself as well, as you are clearly a very strong advocate for her. I hope that you'll be able to tell your mother that you'll need help to take care of her. It's difficult to even admit one needs help, much less ask for it. I encourage you to have this conversation with her, knowing that it, amongst all these other adversities, is another difficult situation. We all have limitations, can shoulder only so much responsibility, and bear only so much for so long. The best care for anyone comes from support from everyone. And I'm telling you: do not feel selfish about your fears or needs for her, your responsibility to her, or what it may entail. It's hard taking care of anyone, especially when they're sick. Especially when they're so weak. You are the last person on the planet who should be getting sick, or tired, or worn out. You are her strongest advocate-- you're her daughter. You must take care of yourself so that you can take care of her, and sometimes that means carving time out of the day for yourself and doing things that might make you feel like you're neglecting her by not being by her side or thinking about her constantly. It's not just that she is hurt and suffering, it's also that I'm certain that she would not want to see you suffer for her. That's not merely shame, or guilt, or pain, or suffering: that's love. At the hospital, turn to the palliative care team for support. Whatever your religious beliefs are, and even if you're agnostic or an atheist, think about calling on the chaplaincy service if there is one: in my experience, they don't judge, and the chaplains I work with are all remarkable, supportive people. Speak with your family and your friends. Write to people. Write to me through MeMail, if you'd like. While you and I might be strangers to each other, know that we are both not strangers to life, or love, or illness, or suffering. You're not alone in this, and you have my strongest regards. I wish the best for you and your mother.

I am a doctor at a major medical center. They will consult the inpatient oncology service, that is usually done when the diagnosis comes back from a biopsy. They can't give you your treatment options until they know what they are treating. The pancreatitis treatment is not palliative - pain medication and IV fluids are the treatment for pancreatitis no matter who you are (and nothing or only clear liquids by mouth). I will warn you, the oncologist will often give you the option for chemo and radiation even when it is unlikely to improve her quality of life or her health. Please talk to the palliative care service too regardless of what is said by the oncologist. Your mom has many health issues and you will need to discuss goals of care. Not all hospice is home hospice. Ask social work about residential hospice. I'll be back with more thoughts later!

If the process isn't going to be long, now is the time to ask extended family* for financial help. Then you take fmla and care for her as she dies. An oncologists prognosis will be useful in determining the time scale.so yes indeed push for it if it is unclear how long she has. * this may include family that you hate or that hate you, etc - estranged family etc. The end of life can shake mercy and altruism out of many a stone. I am so sorry for you both in this awful situation.

Your post is really heartbreaking, and I really hope this all goes as smoothly as possible. I recently left the hospital following surgery for colon cancer. That's all the expertise I've got, here. Not a doctor, not a lawyer, not a person with a dying parent, knock wood. All I can offer is hunches, encouragement, and the perspective of somebody who was talking about palliative care for myself, not so long ago. The first thing that leaps out at me is, you should not feel guilty about the maelstrom of emotions you're feeling now. You are in a horrible position, and you are doing everything you can to do right by your mom. You have been her primary caretaker for many years. Most people never go that far for their parents, or anywhere near it. It seems to me that physically transporting her to see an oncologist should not be such a huge hurdle. Is she able to sit in a wheelchair? I haven't been very mobile since my surgery and every time I visit the hospital they put me in a wheelchair and wheel me around. Maybe there are reasons why this can't be done for your mom, but I haven't heard them yet. In any case, the grim truth is that she might not live long enough for some of these things you're worried about to really become issues. For now, maybe it makes sense to just put on a brave front and be kind of vague about what's going to happen. You really don't know what's ahead, so maybe you should just try to keep smiling and tell her you'll take care of her. Even if you can't take care of her as much as you want to, I think it's obvious you'll take care of her as much as you can. Tell her you'll be there for her, and you'll do everything you can. And: the wiping the butt thing. Isn't it awful, how our minds seem to go there, when we think of caring for our dying parents? Everybody worries about wiping mom's butt. I think it's just such a gross, vivid image, it seems to capture so much about the horror and the loss and the reversal of the parent-child role. I've never done it, and I pray I never have to. But I've done some heartbreaking, disgusting things in this life, and I'm still here. You can get used to awful things, bored by them, even. Sometimes, things happen and they seem unbearable. The bad stuff is crashing down on you and it's just too much and you cannot bear it. But then the bad stuff keeps happening, and even if your life feels like a nightmare that won't end, you get up every day and you deal with it. You feel like you're gonna go crazy, and maybe sometimes you kind of do, but there's always another phone call to make or another meal to cook and you just keep bearing the unbearable stuff. Eventually the unbearable stuff stops, and you probably go back to something like a normal life. You can be changed, you can be scarred, you can be kind of broken. But you beared the unbearable, and life goes on. Try not to judge yourself. You'll bear this, and you'll do the best you can. And that will be enough.

Oh - and starting right now - take notes. Get a composition book if you can and write down everything you're told, get the names of doctors you talk to, get the names/doses of drugs they mention, write it down. It's very easy to forget or get confused about the timeline when you've being given so much information.

I'm so sorry for your loss, royalsong. You're in my thoughts.

I'm so, so sorry to hear that. You must be exhausted; take care of yourself and let other people help if possible. Sending you good wishes.

Oh royalsong I'm sorry. Hope you are doing as ok as can be under the circumstances!

One last thing, because I haven't bloviated all over the place enough yet: try to treat yourself a bit. Don't start drinking like a sailor or eating chocolates until you get diabetes, and don't collect shiny things until you go broke. But baby yourself a little. Do things you enjoy. Find ways to escape, for a while. My god, you've earned it.