Jan 18, 2013 - 1:34 am
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.