Mom's journey to hospice; second stop--hospital floor

After arriving at the hospital, I ran into the ER where the staff there quickly directed me to the floor where my mom had been transferred. I figured out where I was going quickly and found my mom lying in a hospital bed, semi-conscious. My dad, of course, was at her side. I remember waling into the room forgetting that I was still wearing a dress, heels and jewelry. My makeup must have looked a mess, but I had not even thought for a moment to change my clothes from dinner. I right away asked the nurse some technical questions about mom's lab values, and based on my appearance along with the scope of my questions, she asked if I was a doctor. Ha!

When I first came into the room, my dad looked both relieved and surprised. Probably surprised that I had made the long drive and was still awake. Relief came from someone helping to alleviate his palpable sense of worry. What was going on with my mom? Why was she suddenly doing so poorly?

My mom did not look good. She acknowledged me being present, but I could tell she was too uncomfortable to register any happiness at seeing me. It was a different discomfort than the excruciating pain that had first brought her into the hospital and precipitated the discovery of her cancer diagnosis. It was pain nonetheless. She fidgeted in the bed and moaned occasionally, slowly shaking her head back and forth as if giving a 'no' in response to some invisible question.

The nurse was still in the process of admitting my mom to the floor and she had medications to administer. Whatever it was that she had to give my mom -- I think it was steroids --it made my mom wretch and vomit immediately. The nurse was kind enough to express how terrible she felt about being the one to deliver the distress-causing medications. I explained to the angel nurse my mom's cancer diagnosis and her history of receiving chemotherapy. "She really needs a strong anti-emetic on board," I told the nurse. The nurse rushed out of the room, obtained an order for IV anti-nausea and anti-vomiting medication, and delivered it right away. She also didn't hesitate to ask my mom about her pain and act on my mom's '8 out of 10' answer, giving her something powerful via IV. Mom visibly relaxed.

For 45 minutes, an inordinate amount of time for a floor nurse to spend with one patient, this wonderful woman fussed over and cared for my mom. She finalized the admission, asked for my mom's records from California, and let me know a neurologist would be by in the morning to evaluate my mom's mental status more thoroughly. My mom was back to the expressive aphasia type of speech, plus her blood pressure was unstable.

Somehow in the mentioning of her California records, my dad remembered that they had brought something with them to Chicago -- it was a copy of the CD of the MRI taken when she had her mini-stroke. He told me it was at the house and I could retrieve it.

Once my mom seemed more comfortable, with anti-pain, anti-nausea and whatever else in her system, I finally was able to breathe. Of course the moment I relaxed, I realized how exhausted I truly felt. Everything ached. My back from driving for some many hours, my feet from being in heels and my psyche from once again feeling bewildered. It simply wasn't obvious what was going on with my mom. I realized I needed to go home and rest. Smartly, I didn't bother to ask my dad if he wanted to join me. He would stay with my mom.

I kissed my mom, hugged my dad and promised to be back by 8am. After that I made the short drive home, showered, got into bed and slept for 3 hours. I clearly remember lying down, closing my eyes and waking up without an alarm, still in the same position I first laid down in.

After dressing quickly in comfortable clothes and saying a brief hello to my kids and husband, I prepared to return to the hospital. Looking back, I realize I again wasn't thinking straight. Once again, sleeplessness and shock were taking over and I was reacting to what was happening, unable to reflect or be productively proactive. In my preparation to leave though, I found the CD of the brain MRI my mom had had in relation to her mini-stroke a couple of months beforehand.

I arrived at the hospital before 8am. My dad semi-awake in a chair next to her bed, breakfast had been served and my mom wasn't eating. I found her day shift nurse and asked when we could expect the neurologist. Mom actually seemed a bit more 'with it' that morning. She was more alert than she had been and was ready to talk. I don't remember what we said, but it was obvious she could think more clearly and communicate.

Not too long afterward, the neurologist showed up. I remember trying to engage with him, explain mom's cancer diagnosis and her mini-strokes. He expressed irritation with me and said he needed to hear from Sally if he were to evaluate her properly. In other words, he wanted me to shut up.

Although I felt angered by his comment, I stayed quiet. Inwardly, though, I worried that it was a bad sign and that his dismissive, silencing attitude towards me would lead to further miscommunication in my mom's care plan. Being involved and having a voice to ask questions were all I wanted. At least I could offer him the MRI of her brain from June. He accepted it and said he would look at it but would also order another MRI. He could potentially compare the two results. He also shared that the massive steroids mom was receiving were probably helping her to think better. He didn't know what was going on with her brain exactly but he suspected her fainting and aphasia were brain-related. No other lab values or test results were of concern nor were they pointing to another medical issue.

It occurred to me or maybe my father that we should inform my mom's oncologist of her recent episode and hospitalization. I picked up the phone and called his office right then and there, left a message requesting he call me back.

At some point in the day, I must have called my sisters -- the older one in California and the younger one in Arizona -- to provide an update on mom's condition. I also told them about calling the oncologist.

I don't have an exact accounting of the details of the day, July 18, but I do remember going back to my home to wait for the call from mom's doctor in California. And for some reason that escapes me now, I had my sisters on the line when the oncologist called.

"The CT scan doesn't look good," he told us. "The cancer looks like it's everywhere. I'm sorry."

So there it was, the CT scan details were unimportant. We didn't need to know the locations or size of cancers. The main news was: her cancer, the masses, were back with a vengeance. I went back to the hospital to tell my mom and dad the news and check-in with the doctor to tell him what the oncologist had reported.

Once at the hospital a few minutes later (it really was a short drive), I actually saw the neurologist before walking into my mom's room. "The results of her MRI are in," he told me. His tone was softened and kind -- scary based on his earlier terse attitude. "Here, you are medical, right? Take a look with me."

He showed me the MRI and said it explained everything going on with my mom. There were masses of her cancer that had spread to her brain and were proliferating. There. That was it. The largest mass was impinging on her speech center. He didn't know how she was still functioning based on the tumor's size.

He also told me that he looked at her previous MRI for comparison and felt it was unreadable. "I don't know how they made diagnosis off of it," he said. "The image quality was terrible."

We had never bothered to look at the MRI; nor we would have known what we were looking at. It didn't matter at that point in time. My mom had cancer spread to her brain.

The doctor looked at me and said quietly, "I recommend we bring in hospice. I think your mom has four weeks or less to live."