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Newbie here..mom diagnosed with stage IV Ovarian Cancer

juls336
Posts: 2
Joined: Jan 2013

Hello,  I will apologize upfront for the long post, but since I'm new I'll share all that's happened up to now.  

My mom is 62 years old and was diagnosed with Stage 4 Ovarian cancer 14 days ago.  She went in the hospital 12/29 and wasn't diagnosed until 1/4.   She's had issues with her breathing since this began, in fact that was one of the main issues that finally made her go to the ER,  the other big issue was swelling in her legs and abdomen,  which we now know is  Ascites.  The doctors and nurses keep asking me if she previously had a bipap machine or was ever on Oxygen at home and I keep telling them no.   She is very overweight but the Ascites has made her so big that it's pretty much debilitated her to a bed.   Originally they thought she had Pneumonia (in fact 3 times we've been told Pneumonia, and 3 times we've been told it's not Pneumonia).  The fluid in her lungs is from the cancer, not Pneumonia.  After one of the tests they did with dye, she got acute renal failure.  Her kidneys are working fine again now, but that itself was very scary. 

The first hospital she was in said her cancer is inoperable and that she needs Chemo but can't have it because she is too weak/deconditioned for it.  They said she would need to go to rehab first.   So she was sent to a skilled nursing facility and 4 days later they found her blue and lethargic.  She was rushed to the ER and I stayed all day with her while she was on a bipap machine.  That night they came and said she was being moved to ICU.  Shortly after they allowed us into her room in the ICU, we were surrounded by 2 doctors and a nurse who started asking us about when we wanted to stop trying.  We were caught off guard and didn't know what they were talking about.  They said she had signed a DNR the day prior at the skilled nursing facility and that because of that we should respect her wishes.  I couldn't believe what was happening and reminded them that she had only been diagnosed with cancer 8 days prior!  I refused for them to take her off the bipap and told them to hold off on a breathing tube.  They brought in a chaplain and she said we should each talk to her alone, etc.   We all prayed around her.  We were told she would not make it through the night.  The doctors again brought my brothers and I into a room where they proceeded to say that we should take her off the bipap machine and let her go.  I asked if they could give her morphine to make sure she was comfortable and just keep her on the bipap.  They said if they gave her morphine it would stop her heart.  I insisted that the bipap was helping her and that I would not let them give her an injection that could stop her heart.  I also told them that unless she seemed to be in pain (which she didn't) I was not stopping anything.  I got out of there for a break and by the time I got back her Co2 had started going down and she came back to us!  Thank GOD I did not listen to them.   The first words she said after she came around and said this to the doctor was that she signed the DNR too soon.  She has now made it very clear to all of them to do everything possible.  She wants to fight this disease.  

The hospital she was at didn't really seem to have any interest in helping her fight this and was only treating her symptoms.  I made a call to my own Gyn Oncologist (which I see every 3 months due to previous female Cancer issues/surgery).  He is a specialist and one of the best in St. Louis.  I told him the situation and he agreed to have her moved to Barnes Jewish hospital in St. Louis and to be her attending.  Things moved quickly and he had her moved that day.  This gave my mom a lot of hope and we were all very happy about this.  She was transported by ambulance and I made it down to the hospital shortly after.  Unfortunately, within an hour or so of arriving the nurses told her she couldn't stay on the GYN Oncology floor because her Co2 was high and she had to go to ICU.   They talked to me about intebating her and I told them if they had to do that it was fine with both me and her.  Luckily it didn't come to that.  She had improved so much that I went to see her yesterday I walked in to find her in a recliner smiling and only on Oxygen!  I was so happy and she was doing soooo much better.  They had put in a Pleurx line and that seemed to have made all the difference.  She was moved from ICU back up to the GYN Oncology floor, YAY!   We thought all the breathing issues were solved and now we could move forward to the next step of getting to Chemo.    

Our happiness was shortlived.  When I went in today I found her confused and disoriented.  Her oxygen was down around 90 and alarms kept going off everytime it dropped in the 80's.   By the end of the evening she was back in ICU again.  This is so frustrating!  Although her breathing wasn't as bad this time it's still such a let down.  She never smoked, I don't get it.  

The unknown is so hard...the hope then the letdown.   She is so swollen...her legs are wrapped, her toes are wrapped and her abdomen is huge.  They've done 2 paracenthesis' since last week, removing a total of 6 liters from her abdomen.  1 Thoracentesis of 1 liter removed previously and then 1 liter yesterday...750ml today.  Is this hopeless?  If we get her breathing under control will she even be able to try to build strength walking when her legs are so filled with fluid?  I don't want to give her false hope but I feel like I've been on the sidelines being her cheerleader to keep fighting and hang in there, and that I'm possibly setting her up for the biggest letdown ever if they tell her she will never be strong enough for chemo.  I really don't want to mislead her but I've gotten no plan from the doctor's other than back when this started.  We've had very confusing advice, from different sources.  The worst was the lady at the skilled nursing facility who acted like I was just awful for giving her any hope.  She said instead of me dragging her to try to get Chemo, which would kill her, we should just have her enjoy what time she has left.  Enjoy???  Quality of Life???  There is none now!  I want her to feel better, even if we can't fight the cancer.  Yesterday she was SOOOO much better and more like her old self than I'd seen her in months.  I am just so lost, I don't know what to do.  I feel awful for her and wish I could do something to help her.   

If anyone has been through anything like this themselves or with someone they know, please share your stories.  I feel very alone and uneducated in all this.   

 

wholfmeister's picture
wholfmeister
Posts: 260
Joined: Dec 2012

Wow! You and your mom have been through so much in such a short time.  I'm just 2 years younger than your mom, and I envision you as my daughter's age, so my heart hurts for you.  My journey has been very different, but if you read through the different posts on this board, you will find many great women who have been through tremendous struggles.  Some stories have sad endings; some have good endings!  No one knows, and that is why I feel, if your mom wants to live, you keep fighting with her and for her.  Either way, it won't be easy, but the folks on this discussion board will offer all the support possible.  You are in my thoughts and prayers!

SHANNON1231's picture
SHANNON1231
Posts: 53
Joined: Nov 2012

I am so sorry this is happenening to your mom. I would just keep asking what can we do to get her ready for chemo? The chemo will help with the ascites also which is probably the cause of the breathing problems. She is blessed to have a daughter like you by her side. Just be persistant with the doctors. I wish you all the best and will pray for your mom.

kikz's picture
kikz
Posts: 1275
Joined: Jun 2010

for what your mom is going through and you as her daughter as well.  First I want to adamantly respond to your question about hopelessness.  I believe that hope is the will to fight to the end for what we want.  It doesn't always turn out the way we wish but sometimes it's all we have.  If I didn't have hope, I could not get out of bed each morning.

All the women on this board have gone through the daunting journey of ovarian cancer.  I have never known a braver group of women.  But I feel it is not really bravery.  It is a strong will to live, which people perceive as bravery.  We just take each step as it comes.  Some are harder than others.  Some seem impossible to overcome and sadly there may come a time when we are at the end.

Ask about support groups in your area.  Could you possible speak with a social worker?  Some hospitals have them available.

You are in an overwhelming situation.  I think I handled my illness more easily than I would if it was my mom.  That is a whole other set of emotions.  

My bottom line is not to give up.  As long as your mom wants to fight, be her warrior.  There is no need to rush since as you say she was only diagnosed a couple of weeks ago.

I myself was inoperable until I had chemo.  I had paracentesis twice and a total of seven liters were removed.  That was a wonderful relief.

I am glad you found us even though it is under these circumstances.  Know that we are here for you whenever you need us.  These women have kept my spirits up for 2 1/2 years.  There were times I felt I couldn't go on so I would post my fears, sometimes shedding tears as I typed.  The responses were always heartfelt and comforting.

You and your mom are in my thoughts and prayers.

 

Karen  

lovesanimals's picture
lovesanimals
Posts: 1257
Joined: Sep 2011

If your mom has hope and wants to fight, then she should be allowed to do so with all of the resources that are available.  You're doing all the right things by being at her side and being persistent on her behalf.  Please know that I'm praying for both you and your mom!

Hugs,

Kelly

 

 

juls336
Posts: 2
Joined: Jan 2013

First, I want to say thank you so much to all of you for your words of encouragement and support.   I know I was overwhelmed last night and feeling very frustrated at all of this.  It seems like a roller coaster, up, down, up,down.   We finally got word from the doctor today that he has a plan to start mom on chemo.  We were told maybe today or tomorrow but now maybe Monday.  I am just happy that we were finally given a plan.  I learned how to drain her PleurX catheter today also.  Her breathing was better and I am just looking forward to her getting on the road to recovery.  It's a horrible feeling going day after day knowing the cancer is throughout her body and nothing has been being done to stop it.  She and I both know that the Chemo will be rough but it is what she needs to stop this cancer.   They told me her CA125 is currently 1159.   The doctor is going to start her chemo at a medium dose since she's not super strong right now.   She will be given Taxol and Carboplatin.  Looking forward to the 1st treatment, I know it will be tough, but she knows it will help her and hopefully get rid of her Ascites.  

lovesanimals's picture
lovesanimals
Posts: 1257
Joined: Sep 2011

So glad that your mom is going to be starting her chemo so soon.  Although my journey has been different from your mom's (I'm stage 2b), I too was given Taxol and Carboplatin and I know other women on this board also received that "cocktail".  I was told by my chemo nurse that although each person experiences side effects differently from chemo, everyone tends to feel fatigue.  My chemo was administered every three weeks and I was definitely very fatigued for the first five or so days after each treatment, but after that I felt pretty good.  I also experienced loss of appetite for the first few days and major constipation, which I dealt with by taking Miralax, starting a couple of days before chemo and then for a few days after each treatment. 

You're right - chemo is no picnic but it is doable.  Your mom can do it!  She's lucky to have such a caring daughter at her side.  Please keep us posted and always feel free to come here for information and support.

Hugs,

Kelly

wholfmeister's picture
wholfmeister
Posts: 260
Joined: Dec 2012

It does help to know there is a plan!

Those are the same drugs I started chemo with.  Ask the doc or nurses tomorrow to start your mom on a gentle laxative, like Miralx, in preparation.  Your mom will be given several anti nausea drugs in her IV when she gets the chemo.  And be sure anti nausea drugs have been ordered to be started right afterwards.  You need to be proactive with both the laxatives and the anti nausea meds...don't wait until its too late.  Chemo isn't a piece of cake, but for Many of us, it wasn't terribly awful. You just take it one step at a time. Hoping the best for your mom.

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