Rough Days

The last two days have definitely been a mixed bag. First, the good news. I received a call yesterday from the genetics counselor who told me that I tested negative for the the BRCA1 and BRCA2 genes. Great news! This doesn't mean that my cancer doesn't have a genetic link, it just means that if it genetic, they have yet to discover the gene that is responsible for the breast cancer in my family. This in no way changes my treatment decision of a double mastectomy. I am forging ahead with that. It does mean that I won't need to have my ovaries removed.

This past weekend several of mom's cousins rented a few houses in town and had a get together here in North Beach so they could see and spend some time with her. My mom's Aunt Nell and Aunt Doris also came. It was so good to see family and although it really took it out of mom, she loved catching up with everyone. Aunt Nell is a retired nurse and worked her entire career as a nurse. As she told us early on, she doesn't have much, but she has wheels and time so we had arranged for her to come take care of mom while I was in the hospital recovering. On Sunday before the group left, Aunt Nell pulled me aside and told me that since she was returning in 10 days to help care from mom, she was offering to stay and help us out. I felt as though the clouds had parted, the sun shone through, and she (the angel) emerged. Mom, Gary and I whole-heartedly welcomed her help, even early!!

So I had my pre-op appointment yesterday morning. All systems go and countdown has begun. Towards the end of my appointment, I received a call from Gary. He and Aunt Nell had taken my mom to have a CT and bone scan. I was concerned that she would have a lot of difficulty getting the contrast down, but she actually did better than any of us expected. They had to lay mom flat to do the CT and because her lungs were pretty full, she had quite a bit of difficulty breathing. Gary was by her side the entire time and helped her work through it (that and bumping her oxygen to 8 liters!) He called me to let me know and we decided that she needed to go the ER.

It ended up being a wise choice. Her right lung was nearly completely full and the lower 2 of her 3 lobes were completely deflated. The pulmonologist who saw her in the ER felt that even though she was scheduled the next day to have the fluid drained, it was such a dire situation that he recommended to drain at least some of the fluid off. So he drained about 3/4 of a liter of fluid off. She was much more comfortable, but was still dehydrated. By this time is was 8pm and we'd been in the ER since about 11:30. We had been told they were going to admit mom to the hospital, but the ER doctor came in to tell us that the oncologist covering for mom's doctor was NOT going to admit her. Never-mind she was incredibly weak, hadn't had anything to eat all day, and had not gotten any IV fluids either. So here is was 8pm, by the time they get us discharged it will be 9pm (if we're lucky) and by the time we get home it would be close to 10pm. AND mom's not supposed to have anything to eat after midnight and we have to be up at 4am to get her back in time for the procedure. I explained all this ad nauseum to the ER doctor who was NOT happy the doctor wasn't going to admit her. So we got her home around 10. She was so pooped that we set her up to sleep on the couch; she just couldn't tolerate going up the stairs. We paged the surgeon who was going to drain her lung and do the procedure to keep her lung from filling again. The last information he had was that she was being admitted, so we wanted to let him know that the plan had reverted back to her coming in as an outpatient. We didn't request a call back, but he called us back almost immediately. Needless to say, he was pretty ticked off they hadn't admitted her. He told us that we wouldn't need to have her there at 6am, but to come around 7:30.

She slept very well (we have a comfy couch.) We arrived with plenty of time to spare and they let us wait with her before they took her back. The plan was to draw any remaining fluid off the right lung and insert the talc to help hold the lung to the pleural lining.They were able to finish in about an hour, but when they finished, her lung did not re-expand the way they expected. The drew off an additional liter from the right lung. After the procedure, her oxygen levels in her blood dropped very low and very rapidly. They put an oxygen mask on her. When that didn't work, they put in what can best be described in layman's terms is a breathing tube "lite" (or a LMA tube for you medical types.) They planned to let her lung reinflate and removed the tube. Again, things didn't workout as planned. She had some more distress and they had to intubate her and put her on a ventilator. Her blood pressure dropped very low also. All of this was in the recovery room. They asked Gary and I to come back and then they put us in a little room for the doctor to come talk to us. At this point I got a little nervous. When he came in, he explained what was going on and asked what her wishes were in regards to life support. Wait. WHAT??? Talk about a direct hit at the water line. We totally weren't expecting that. We had to give him an answer right then and there. Mom and I have talked about it, but she just had the procedure done and I felt we needed to give her body a chance to heal itself. Because of her debilitated state, it is going to take more time to heal. We were able to spend a little time with mom, but they were putting in a central line (a "major" IV) pretty quickly, so we couldn't visit very long. She did squeeze my hand and responded to my questions so that was a little encouraging. One of the doctors showed us her chest x-ray. You didn't have to have medical training to truly recognize the extent of her pnuemothorax.

After we left the recovery area, it really started to hit me. Gary and I were able to further discuss her wishes for her code status. We decided to ask the doctor to make her a "chemical code." This means that if her heart beats erratically they can use drugs to try to correct it, but we don't want them to do compressions if her heart stops. She is so frail and weak that it would do much more harm than good.

It was a rough afternoon, but they got her into the ICU around 2:30. They had been able to stabilize her blood pressure and her blood oxygenation was doing well also. We were allowed to see her around 3pm. She was still responding to me; squeezing my hand. She snoozed for a time while we gave the nurse information. One of the chaplains came by and we spoke for a while. She is also a music therapist. She had her harp in tow and came into mom's room and played a while. It was really nice! After she left, mom woke up. I asked her if her backside hurt and she indicated yes. They were able to turn her and gave her some pain medication. She was much more comfortable. I explained what had happened to her and what the plan was. She was very lucid and was able to nod responses to 'yes' and 'no' questions.

She will stay in the ICU for a few days. The hope is that her lung will slowly re-inflate and she'll be able to ween off the ventilator. Time will tell.

I'm certain I've rambled away with this entry. I'm pretty exhausted and it has taken me two hours to get this done. Pardon any grammatical, spelling, or math errors... I'll try to keep the blog up-to-date so you can all be kept appraised of changes or improvements.