Bad, bad, bad day yesterday. I called Daddy last night before I left work to talk about what he wanted for dinner. He told me that he thought that Dr O’Rourke was right – that he “might be off by a month or so, but he’s not wrong.” Told me that he and Linda have been discussing Hospice, and he’s thinking about starting the process without Mama’s knowledge. And he was at Walgreens picking up some heavy-duty anti-nausea medication that Linda called in. Linda told Daddy that the vomiting is caused by the degeneration of her liver. So I left work, screaming out of the parking lot, and called Bobby and completely had a meltdown – cussed his mom and everything and everyone that is just accepting that this is the end. Scared the snot out of Bobby because in the 6 years we’ve known each other, he’s never seen me act that way. Went to Townville, and tried to act normal – Mama was up sitting in her recliner. She’s still very weak, but she didn’t vomit yesterday. There’s a colony of fire ants that moved into the kitchen, and Sue and I spent all evening spraying and cleaning.
I’ve been on the phone all morning – with Mama, Daddy, Duke, the G-ville Cancer Ctr, Bobby. Dr Marcom called M&D – apparently my continual harassment during the last couple of days prompted a phone conversation. He talked to both Mama and Daddy, which is good – they have very different perspectives. He got very solemn when Mama told him about O’Rourke’s Hospice recommendation, and suddenly decided that he would work us in for next week after all. So we’re going Tuesday, Sept 21st – they’re going to call and give us a firm appt time. Daddy was very clear when he talked to me on the phone afterward that Marcom didn’t say anything to contradict O’Rourke, and was completely in line with him – it’s almost like Daddy’s way of preparing himself is to assure himself that, yep, it’s true, she’s going to die – and unfortunately, he feels led to share that with me almost every time he talks to me. It scares me that Marcom didn’t want to wait for our appt on Sept 20th – the urgency that he’s feeling is nice because he’s actually doing something, but its implications are terrifying.
I lay in bed this morning until 7:45 and cried. I just can’t understand how this could be happening to us. I can’t picture my future without Mama. I can’t picture our family without her.
The Eastside office just faxed me the CT scan dictation. The fax machine is almost out of toner – of course it is, it hasn’t been out of the toner since I’ve been here, but on the day that I really, really need it, it’s out of toner – so I can’t read all of it. But I can read enough…. It’s not good.
Axial 5 mm thick section was obtained from the domes of the diaphragm through the iliac crests after injection of 150 cc. Images demonstrate innumerable new nodules within both lung bases and three on the liver. Most in the liver are hyper-enhancing target-type lesions suspicious of metastatic disease. The index lesion on the right lobe in the prior study measured 1.8 cm, now measures over 2.3 cm in size. The nodule in the right lung base is 1.1 cm in size on image 6. No pleural effusion is noted. The kidneys and spleen are essentially unremarkable. Pancreas and gallbladder appear to be within normal limits.
Evidence of extensive progression of metastatic disease involving the lungs, liver, and bones diffusely
Talked to Bobby – I sent him this report. He’s actually encouraged by it because the increase in the liver lesion doesn’t seem to warrant the “liver’s breaking down” diagnosis. However, I just looked up the symptoms of liver failure: nausea, loss of appetite, fatigue, weakness, and diarrhea. This is scarily similar to what I’m seeing in Mama. Last night, she couldn’t stand up for more than a few minutes at a time – when I asked him about it, she said that she was “just tired” and she needed to work on her stamina. She only ate a little turkey & cheese sandwich – she’s lost 7 pounds since Monday.
How can this be? How can I be motherless at age 30? I feel like I’m in a nightmare, except I know I’m never going to wake up from this. It feels so surreal – like I’m almost detached. Dr Marcom knows that it’s not much longer – and honestly, I’m not sure that taking more chemo is the right thing to do. Maybe it’s not. Maybe we need to just accept the inevitable. Or am I just losing hope? How can I believe in a just and fair God when this is happening to my family? I’ve always felt so lucky to have the family unit that I have – and this will change it forever. I don’t know if I’ll be the same person if Mama dies. I don’t know if I’ll ever feel like a kid again. I can’t picture, conceptualize, understand, imagine, wrap my brain around my life without Mama in it. How can this be? My children will never know my mother. Is this true? I talk to her every day. I love her. I can’t lose her. I can’t be alive without her here. Why would God take her? Why didn’t I know this was coming? How can you live your life every day like everything’s normal, never even sensing that things are going to go horribly wrong just around the corner? She’s 50 years old. She’s not 60 or 70 or 80. She’s 50 – which means that she’s supposed to have at least 20 more years with her children and grandchildren. I feel the bile rising in my throat when I think about it. I feel like vomiting, like putting my head down and just throwing up. Since she was rediagnosed in Dec, after the initial shock, I comforted myself that at least cancer’s a slow disease. At least we would have several more years with Mama – time to adjust to the idea of losing her, time to accept that it’s coming, time to have a baby and let her meet him, time to forget what “normal” life felt like before our little family unit was dropped into this black hole. But now…. I was deluding myself? I was giving myself false comfort, telling myself that we had more time, when really the initial prognosis was right all along? The shabby shack was our last family vacation? This will be our last Christmas? This will be my last birthday with the entire family? She’ll never meet my children? This will be our last Thanksgiving, and 2008 is the last year she’ll ever see? How is this true? How can this be the right plan? How can this be anything but a horrible, horrible mistake? 18 months to 3 years is starting to sound really, really good. Looks like Mama’s going to prove Dr O’Rourke wrong after all – just not the way that we thought.
And here’s the horrible, truly incredibly terrible thing that I thought the other day. I had a thought, right before I fell asleep last night after taking 2 Oxycotin, that I wish that life would just feel normal again. Followed by the realization that life won’t be normal as long as Mama’s alive. I DON’T wish that life would feel normal again. I DON’T want normalcy if it means that Mama won’t be here. I will spend the rest of life chasing my tail and running from one frantic emergency to the next if it means that we can keep Mama here. What I really want is for things to be like they used to be. I want things to be like they were this time last year. I talked to Mama every day on the phone never realizing that I needed to be mentally recording the conversations, to be remembered later with the caption “When things were normal.” Or “before everything went to hell.” Or “when my mother was alive.”
Daddy just called. Mama’s having a good day – she, Daddy, Jennifer and Linda went to Cracker Barrel for breakfast, and now she’s at Jennifer’s apt. He picked up the CT dictation and Aug 13th blood work from Seneca. Her LDH level was 2085 on Aug 6th – as of Aug 13th, it was 3015.