Worst day - please help

me_and_my_mom

I'm sorry for posting so much, and being so needy. I don't know where to turn. My mom started her chemo yesterday - and is sooo very sick right now. She is in the hospital w/ IV fluids and zofran - unable to even swallow her saliva. Just prior to the chemo, she was nauseous, but was able to eat and drink small amounts (and voic). The nurses at the hospital, one in particular, upset me greatly tonight.
I had a talk w/ her outside my moms room and I broke down crying - saying how hard it was to see my mother sooo uncomfortable, and so nauseous. She told me they took an xray this am because they are keeping an eye on her bowels for a possible obstruction - (The initial x-ray 2 weeks ago did show some bowel involvement - I believe the surgeon used the word entanglement - but she has been able to eat and void). Then the nurse proceeded to sympathize w/ me and ask me if we had thought about hospice. WHAT??????? Nobody, not one md, has suggested this. The surgeon and med oncologist plan is to try the chemo to shrink things, then operate, then more chemo. Why, why, why did this nurse say this to me? Are the doctors not being straight w/ us? We have not yet talked prognosis or statistics w/ the doctors, we have only agreed to try the chemo regimen that they are recommending in hopes of shrinkage and some sort of remission.The nurse was insinuating that the way my mother felt today was due to advancement of her disease rather than the chemo. My mother was sick, and bloated, before she started her chemo, but no where near like this - so, to me, clearly - chemo has knocked her off her feet, so to speak - and we are expecting it to improve over the next few days. Evidently, this nurse has other ideas. She told me it was hard, and God would take my mom when he was ready. Gee, thanks.
I guess I just need to hear others who went into chemo in as rough of shape (very large belly, fluid, 20 cm tumor), and had a hard time w/ nauseous, and got through it all w/ eventual shrinkage of ascites and/or tumor. WAs chemo this hard on others?
Another nurse asked if my mother was going to have more chemo after this. Why would she ask that? Am I just reading way too much into everything?
I need to pull it together - mom just had chemo, feels horrible, but it will get better, right? Anybody? I am, once again, beside myself. Crying so hard today my eyes are almost swollen shut.

Alexandra

Good evening Carol
Doctors are doing the right thing, you mom got into treatment as soon as she could.
She is under observation and hydrated. It takes time for chemo to take effect and it will get better in time. You have to believe.
Being nauseous and vomiting after chemo is common and means that they have to change her anti-nausea meds; talk to the doctor about Emend, Kytril (Granisetron) or Olanzapine.
I would ask the doctor again and again to tap her ascites, it's a 20 min painless procedure that will make her more comfortable. Doctor inserts a needle in her abdomen and then nurse sits and watches bottles fill up. It will make all the difference.
The floor nurse most likely has not read your mom's chart and when she talked to you thought that she was being helpful and compassionate. Forget her. Deal with the doctors. Not everything you hear (including this board) directly applies to your situation.

Take a lorazepam or a glass of wine for anxiety. The only way you can help your mom is to stay strong, calm and think clearly.

email kalner@sympatico.ca or call me 905-960-8043 if you want to talk.

Virtual Hugs,
Alexandra

me_and_my_mom

Alexandra said:

Good evening Carol
Doctors are doing the right thing, you mom got into treatment as soon as she could.
She is under observation and hydrated. It takes time for chemo to take effect and it will get better in time. You have to believe.
Being nauseous and vomiting after chemo is common and means that they have to change her anti-nausea meds; talk to the doctor about Emend, Kytril (Granisetron) or Olanzapine.
I would ask the doctor again and again to tap her ascites, it's a 20 min painless procedure that will make her more comfortable. Doctor inserts a needle in her abdomen and then nurse sits and watches bottles fill up. It will make all the difference.
The floor nurse most likely has not read your mom's chart and when she talked to you thought that she was being helpful and compassionate. Forget her. Deal with the doctors. Not everything you hear (including this board) directly applies to your situation.

Take a lorazepam or a glass of wine for anxiety. The only way you can help your mom is to stay strong, calm and think clearly.

email kalner@sympatico.ca or call me 905-960-8043 if you want to talk.

Virtual Hugs,
Alexandra

thank u Alexandra. I have
thank u Alexandra. I have mentioned tapping her, but it is the weekend and the nurses seem clueless - have not spoken to a doctor today. I keep asking for better nausea meds, and they just keep giving her zofran. I will advocate more for her tomorrow. Your reply means more to me than you can imagine. It is always so hard for me to keep perspective. Already taken 3 klonopin today - thank God for anxiety meds. Right now, I am strong and I am calm.

Thank u, thank u, thank u,

Carol

Alexandra

me_and_my_mom said:

thank u Alexandra. I have
thank u Alexandra. I have mentioned tapping her, but it is the weekend and the nurses seem clueless - have not spoken to a doctor today. I keep asking for better nausea meds, and they just keep giving her zofran. I will advocate more for her tomorrow. Your reply means more to me than you can imagine. It is always so hard for me to keep perspective. Already taken 3 klonopin today - thank God for anxiety meds. Right now, I am strong and I am calm.

Thank u, thank u, thank u,

Carol

You're very welcome
In my experience hospital nurses are reluctant to ask doctors to change anything without multiple reminders.
When I was hospitalized in surgical oncology in September after debulking surgery I literally followed nurses around, pushing IV stand and dragging catheter and stood there hunched over at their station until they paged the doctor. And then came back 20 times and demanded answers. They hated my guts but most of the time I got what I wanted.
If you're not getting answers from the floor nurse, ask for the charge nurse or her manager.
I don't know about your hospital, but usually doctors are making rounds early in the morning and someone from your family should be there tomorrow to talk to them.
Good luck Carol!

lovesanimals

Alexandra said:

You're very welcome
In my experience hospital nurses are reluctant to ask doctors to change anything without multiple reminders.
When I was hospitalized in surgical oncology in September after debulking surgery I literally followed nurses around, pushing IV stand and dragging catheter and stood there hunched over at their station until they paged the doctor. And then came back 20 times and demanded answers. They hated my guts but most of the time I got what I wanted.
If you're not getting answers from the floor nurse, ask for the charge nurse or her manager.
I don't know about your hospital, but usually doctors are making rounds early in the morning and someone from your family should be there tomorrow to talk to them.
Good luck Carol!

Dear Carol
It's so tough for children to see their parents suffer and I know you are anxious and scared for your mom. I'm hoping and praying that she feels more comfortable soon.

Hugs,

Kelly

MJensen

Obstruction
Hi Carol,
Glad you are doing better. It sounds like you were able to see your mom even though you are sick. Hopefully you are wearing a mask. I can tell you first hand that I just spent a week in the hospital a month ago with an obstruction. It actually was a partial obstruction that turned into a full blown obstruction because I wasn't drinking my Miralax like I should have been. It is important she drink Miralax, take a stool softener, drink a shot of flaxseed oil or whatever does it for her to keep her bowels moving. It was horrible though and caused me a lot of pain...cramping, gas, throwing up etc. One night they had to put a tube down my nose into my stomach to drain fluid. I was having X-rays all day so they could look for movement of the blockage or the gas. I wasn't allowed to eat at all or drink water. Just ice chips. I also had 5 enemas a day in the hospital. Things started to move in 5 days but it was pure agony for five days...so this may be part of her pain. The other thing is if they give her any narcotics for pain this will cause constipation as well as the chemo will so make sure things are moving for sure. Even if it is the weekend there is always a DR on call and you can ask the head nurse to get the dr to call you to asap. I like Alexandra, could only take Emend for my nausea. This won't help though if she does have a partial or full bowel obstruction. They need to get that moving and she should be tapped to drain abdominal fluid. I can tell you that there were several days that I thought I wasn't going to make it...so it happens. The important part is to talk with the dr and not the nurses. As I recall your mom is being treated in a pretty state of the art hospital in Boston. If they had seen a full obstruction on the X-ray today I am pretty sure they would send in a surgeon for a bowel resection. You don't sit and do nothing. Try to get in touch with your oncologist and get all these answers you need. You can be assertive even on the weekend. If she has some obstruction or impaction ask them what they are doing about it! Good luck. Please keep us posted. Take care of yourself! . Michele

me_and_my_mom

MJensen said:

Obstruction
Hi Carol,
Glad you are doing better. It sounds like you were able to see your mom even though you are sick. Hopefully you are wearing a mask. I can tell you first hand that I just spent a week in the hospital a month ago with an obstruction. It actually was a partial obstruction that turned into a full blown obstruction because I wasn't drinking my Miralax like I should have been. It is important she drink Miralax, take a stool softener, drink a shot of flaxseed oil or whatever does it for her to keep her bowels moving. It was horrible though and caused me a lot of pain...cramping, gas, throwing up etc. One night they had to put a tube down my nose into my stomach to drain fluid. I was having X-rays all day so they could look for movement of the blockage or the gas. I wasn't allowed to eat at all or drink water. Just ice chips. I also had 5 enemas a day in the hospital. Things started to move in 5 days but it was pure agony for five days...so this may be part of her pain. The other thing is if they give her any narcotics for pain this will cause constipation as well as the chemo will so make sure things are moving for sure. Even if it is the weekend there is always a DR on call and you can ask the head nurse to get the dr to call you to asap. I like Alexandra, could only take Emend for my nausea. This won't help though if she does have a partial or full bowel obstruction. They need to get that moving and she should be tapped to drain abdominal fluid. I can tell you that there were several days that I thought I wasn't going to make it...so it happens. The important part is to talk with the dr and not the nurses. As I recall your mom is being treated in a pretty state of the art hospital in Boston. If they had seen a full obstruction on the X-ray today I am pretty sure they would send in a surgeon for a bowel resection. You don't sit and do nothing. Try to get in touch with your oncologist and get all these answers you need. You can be assertive even on the weekend. If she has some obstruction or impaction ask them what they are doing about it! Good luck. Please keep us posted. Take care of yourself! . Michele</p>

thank u. I am not sick. I
thank u. I am not sick. I thought I was coming down w/ a cold because of a scratchy throat for an hour or so, but am positive it was due to the dry air and the heat in the house. I have not had another symptoms since, and I did not hug or touch my mother. I work in the medical field - I really am super germ conscious.
My mother has been moving her bowels, though not much to move, as she isn't consuming much. I thought they meant the tumor was obstructing, or strangling her bowel, not stool. My mother was at the Brigham in Boston, and her surgical oncologist is from Dana Farber, but she is rec'ing her chemo closer to home, on Cape Cod, in a local hospital. The doctors in Boston are overseeing everything, and when it comes time for consults and surgery, she will go back up to Boston. She prefers to be closer to home now anyhow, so my father can be there everyday - he is 80 yo and wouldn't drive to Boston everyday.
There has been good news - I actually spoke to mom on the phone today, and she is a little better - not a lot, but definately going in the right direction - she is now sipping on ginger ale and liquids, and keeping it down. This is a huge improvement from yesterday. She says the nauseous is a little better. THank You God. I cried tears of relief after hanging up the phone.
Thank u all for your responses. I have especially appreciated the recommendations for anti nausea drugs besides zofran, and have written them all down and will be insisting something other than (or in addtion to?) zofran be tried next time (especially Emend), because I do not want my mother to suffer each tx like she has this one.
FYI - when I had my chemo in 93, I did not vomit one time. I felt sick a lot, but it was much more tolerable. My chemo drugs were different - I had cisplatin, etoposide and bleomycin - and tolerated it fairly well with the zofran.

Lisa13Q

So glad things are better
Chemo after surgery is tough....I think everyone handles it differently. My mother was hospitalized twice after cisplatin..both times for 10 days. She couldn't have anymore after that. Her big issue was balancing the sodium, potassium, and magnesium. It was just horrible. Dana Farber is a great place. We almost went there, but my Mom opted for Sloane in NY. You are in good hands at Dana Farber. The best there are. One day at a time, sometimes one hour at a time. Please keep us posted. Try not to panic. There really is hope and if your Mom is anything like you, I am sure she is a major fighter!!!