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.

13 comments:

  1. You are in prayers! You write so eloquently. I understand the guilt as a mommy. You are strong and inspiring! Big hugs and lots of love to you!

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  2. God bless you and your babies...I'm praying for healing in Jesus name.

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  3. I am still holding on to that miraculous and healing prayers at all time. Hang in there, we love you, your boys need you..

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  4. Always prayers for you! Sending love and hugs!!!

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  5. Promising to send prayers your way, Melissa. You're INCREDIBLY strong. Your family is so lucky to have you. You and your three boys remain in my thoughts and prayers.

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  7. I stumbled on your blog while looking up some meds. I am sorry that you are going through this. I am going through very nearly the same thing. I was diagnosed with stage 3 BC in 12/2003 after the birth of my daughter, then in 10/2013, we found it in my bones. At this point, I too have active lesions in my left femur and pelvis. But they are healing in other parts of my body.
    As your Dr mentioned, its is unfortunately a marathon with bone disease and not a sprint. I am taking ibrance now after having 'broken through' Faslodex.
    Im praying for you

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  8. May this new year bring you a new hope and strength. I think and pray for you and your family each day.

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  9. Melissa, we are praying for you and your beautiful family. Stay strong, my friend.

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  10. Hi Melissa. I have only read a bit of your blog so far. Found you on the mbc site. Just so weird, other than the fact i only have 1 son, i feel like i am reading a blog i wrote myself! I am sorry you are going thru this but thankyou for writing this blog as i feel a little less .... different? and also comforted and strengthened your words. So .... thank you xxx

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    1. I don't know who you are, as you posted as Anonymous, but I wanted to let you know that your comment was received - that it didn't float into the internet abyss. I read it. I'm sorry you're going through this too. Hugs and prayers for you. Light and love to you.

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