Wednesday, November 16, 2016

Guilt

I didn't make it to the store last night. It was 5:30 when I got both boys buckled in from their respective daytime care. Camden seemed in a decent enough mood when I picked him up. Nicholas was happy as well despite reportedly not sleeping well at all during the day and having an irritated bottom. They were fine when I decided, yes - I can make it through errands tonight. It was close to 6 when we made it to Walgreens to pick up meds. 15 minutes later, after waiting in the drive-thru pharmacy line that was 8 cars deep, Camden starts crying because he wanted to go to the store and was sad that we weren't going anymore. Yup. 15 minutes was all it took for me to say F this whole thing - we're going home. Both had suddenly melted down and turned into gremlins in the span of 15 minutes. And I was well on the way to crying myself.

30 minutes to get home. 25 minutes into that drive Mike texts me and asks me how's it going. That was the straw. Tears start flowing and texts start flying. The light takes for freaking ever to process the massive line of cars to get on the two lane "highway" that leads to our neighborhood. I pull in the garage, get the boys inside, take one look at Mike and just breakdown in tears. He scoops up the boys, puts them in the playroom and asks me what's wrong.

What's wrong is this - guilt. As a mother, you love your children immensely. Nothing will change or lessen that. Sometimes however, mothers get tired of their children. They get tired of their tantrums, of their crying, of their neeeeeeeediness. It doesn't mean they don't love them. It just means they are human. But because you admit to yourself that you are just fed-up with them from time to time - that you have secret visions in your head of shipping them off to your mother's or sister's for an extended period of time, and how easy things would be while they're away - you feel guilty (and you know you wouldn't stand an hour without missing them tremendously). "I should have more patience" you say to yourself. "He's only 3. He doesn't even know what he's doing," or "He's just crying because he's tired." You discount your depleted stores of "amazing Mom," take a deep breath, regroup and speak to them again with more patience in your tone and a little more room on your plate.

But that's the kind of guilt a mom in a normal situation feels.

What I feel on top of this "normal-guilt" is "totally-unfair-guilt" for not treasuring every moment with my amazing boys because who knows how many moments I actually get with them. This guilt that I've squandered precious moments with my sons because I wasn't patient enough - strong enough - tolerant enough - understanding enough ... and now I've wasted moments I'll never get back. I feel guilty because I've lost moments and because my plate is full and because I'm not handling things as good as I should be and ... and ... and.

And then Camden sees me crying and asks me what's wrong. He comes to hug me. He tells me he's sorry he made me sad because he wanted to go to the store. I scoop him up and tell him firmly - "NO. You did not make mommy sad. Do you understand? You did not do this." "The why are you sad?" he asks. Oh my darling child if I could explain it to you I would. Instead I tell him sometimes people are sad just because. He accepts that answer and then asks me for Cheerios for dinner. And then I feel guilty for crying where he could find me. And then we pour him a bowl of Cheerios for dinner because - whatever. And then I feel guilty for feeding him cereal for dinner.

(Yes, I was raised Catholic. No, this is not Catholic guilt. Although it's pretty comparable.)

I have an MRI this Friday of my abdomen and of my left hip (again). My PET CT from this past Friday was not as wonderful as we would have hoped it was going to be. Spots that were cooling off on the last scan, are now heating up again. 3 spots in my right lung and it's "indeterminate heterogenous uptake" in my liver (hence the abdomen MRI). There's a spot in the socket where my left femur fits into the pelvis that is also active. This could be from radiation but since I'm going to be on the table, my onc thinks why not, let's add some time to your already long MRI-sesh.

My bones look good however, so that's really great. It doesn't explain the pain I've been having in my right rib cage - but I'll take unexplainable rib pain over PET activity any day. My brain MRI also showed good things. The two spots that remain visible on the scan are each smaller in size by 1 mm.

So for now, we hold. While to me - it seems like this is a bad scan and that things are the forever dreaded progression -- to my oncologist, she doesn't think it's necessarily progression and doesn't want to remove me from a potentially effective therapy too soon. "It's a marathon," she tells me. We need to ride each treatment as long as it's possible and safe. She is OK with us scanning again in 3 months, unless something changes during that time. And of course if nothing worrisome is revealed on this Friday's MRI. There's potential that this flare-up will resolve on the next scan and be nothing. Some women in some of my online support groups indicated they've had this happen. The other quirky thing is my absolute neutrophil count is 3.3. It's double where it's been hovering for the last 8 months. Is it a sign that Ibrance is failing? Since Ibrance usually hits your neutrophils hard and mine have actually rose - I don't know what to make of it. There's the chance that on the next scans this activity progresses further. If that happens, we change treatment. If not, we continue to hold. I hope for holding.

I'm not ready for treatment to change. I'm tolerating this regiment very well. What's on the horizon is unknown - and it's scary. It feeds all the stress and causes all the lack of patience and inability to handle everything - anything.

For now we hold steady and go through the holidays with a known treatment despite an unknown situation. In the new year, we hope for newer and better things - across the board.

Wednesday, November 2, 2016

Walking the line

So it's been like - a whole month and a half since I've written. That's pretty amazing. Even now, it's hard for me to focus on writing. But I know if I don't ... I will "pop" as Mike describes it. So here goes - here's what's been happening.

There's this line that exists - between blissful ignorance and daunting knowledge. It's on this line that I live lately. Sometimes - most times - living on this line is anxiety provoking. You might as well name this line "Anxiety." (I hereby dub theeeeee anxietyyyyyy). I've never had an issue with anxiety until this year. I am one of the most even-keeled, steady personalities you will ever meet. I even list it on my resume as a "Key Strength." It's one thing that has always been reliable about me. I come to the table with a consistent personality, with few exceptions. It's one of the things I'm sure Mike loves about me too. We even talk about how we were expecting waaaaayyyyy worse from my personality post-ovary removal. Instead - it's been OK. Not very different. Which I'm (and my loved ones are haha) super thankful for.

So needless to say, I am weak in identifying what anxiety feels like in my body. For a few weeks around and after my last blog post, so late September, I was having a very consistent pain in my chest - same spot, each time, near the "mediastinum" area of my right lung where the scans noted activity. It would come and go throughout the day, but when it would come, it was enough to draw my focus to it and evoke verbal complaints. Add to this my last lab work showed a small increase in the CA27-29 tumor marker. Note - since we started monitoring this marker (Stanford never monitored this. My onc here does. They can be unreliable to a degree.) it has steadily decreased from 171 down to 80ish. The increase was up to 101. Combine this marker and the pain - I went in to see my doc. I was supposed to have a full 4 weeks without a doctor's appointment. It would have been the first time this year. Instead - I made it 2 weeks. I went in - but I was disappointed I didn't get the full 4 weeks off. I met with the nurse practitioner - she told me not to worry about the marker, that 20 points isn't a big deal and could very well be a calibration issue. "Hundreds of points" she says, in her Russian (I think?) accent, is a concern, not "this small change." She says she believes it's anxiety, but that she's willing to order a scan for me. I decline the scan. I want to trust her that it is anxiety and that I can get through this until my next PET. I go home. A few days later, I email her and ask for the scan. I couldn't do it. I needed to know because the pain was still there.

And this - right here - this is the line. This is the line that I try to walk every day. I try to figure out how I am supposed to balance on a knife's edge between knowing and not knowing and accepting and rejecting.  It's no wonder I've now had at least 5 panic attacks this year when before I've only had one my entire life, which happened to have been during chemo in 2010.

So I go in for a CT of my chest. I get the radiologist's read later that same day. All looks good - no crazy, out of control, mass growing and compressing my lung, causing the pain. Of the two lung nodules, one is stable and consistent with the last scan, and the other is smaller. Great-freaking-news. I breathe. The radiologist also notes a slight thickening of my esophagus behind my sternum, but states it could be esophagitis. (I'll come back to this side-bar in a moment.) So - it's anxiety. But why?! We were at a point of freaking calm! We got past all those appointments with the neuro onc and we weren't supposed to come back for 4 weeks and scans were in 8 weeks. I started back to work and things were slowly getting on a rail. And then I talk with my friend and she tells me about "delayed stress response." Essentially, now that we were in a period of less-stress, my body was finally processing all the high-stress from before. There was finally room for it.

Two weeks after the CT, I was due to go in again for my monthly visit to the onc. We do labs. We meet with my onc. She goes through her regular set of questions - assessing my current status. All is well. I feel well. I'm not having the pain any more and I'm happy the CT was good. But then she goes into her guarded tone of voice and begins to discuss the CT results. She says the radiologist noted the thickening of my esophagus. Have I had any difficulty swallowing, have I noticed anything at all ... ?Shit. Seriously? I read that "esophagitis" and took it as such since everyone in the household has been battling a cold-bug thanks to school and daycare. Is it something I need to be concerned about? Fuck dude. But when she talks in her guarded tone of voice - it puts me on alert. I will rant for a moment however - because she has yet to go through my images with me - and I don't know that she looks at the PET or CT images herself at all and instead I think she just reads the radiologist's written report - and that irks me to an endless degree. End rant. However - a rant to say - I'm not sure whether or not to be on alert because it very well could be a cold as much as it could be something else.

And again - I'm there. On the knife edge - walking the line between thinking I knew what I knew about a "good" CT scan and not knowing "what else" might be there. It freaking sucks.

The appointment wraps up with her concluding we'll watch it and she orders my next interval PET CT scan for November. My neutrophil counts come back above 1 so I am good to start cycle 8 of Ibrance. A few days later I also get word that my CA27-29 marker is down to 60ish.

So here we are today - I'm back at work full-time and have been for a month and a half now. My next PET CT and brain MRI is scheduled for 11/11. The anxiety over the upcoming scans is already ramping up. I was full of worry about it the other day until Mike reminded me to enjoy the position we're in right now - enjoy not knowing for now. I try. I turn my nervous energy to other things - like essential oils and landscaping and researching house plants that can survive in a super sunny window with lots of direct sunlight. (FYI - peace lilies are NOT suitable for this location.) Oh and Nicholas came down with an ear infection, which has recently cleared with the help of antibiotics, only for us to find out at his follow-up appointment to make sure that his ears were clear, that he now has hand-foot-mouth disease, not to be confused with the livestock version of the virus. Yeah - I thought it was just a drool rash and diaper rash. Evidently it's crazy contagious so that has me freaking out as well. My hands are super dry from all the hand-washing trying to make sure I don't get sick. But thankfully his ears responded well, and the ear infection is gone.

So for the next week and a half, I will try to enjoy sitting on the knife-edge of where we're at today - between a good scan, a questionable spot and the weight of the next scan pressing down on us - while trying not to catch hand-foot-mouth and working full-time again and preparing for the holidays and Nicholas' first birthday. Oh and trying to teach Camden NOT to ask for EVERY toy that is advertised on TV.