A Bazillion Better Days

I find myself sitting in a quiet house here this afternoon – Tim took Alexander climbing, and Thomas went to work.  I figured today would be as good a day as any to fill you in on the shit storm that I/we have been living through.  It’s at least a kind of therapy for me to write it all down.

And then my dear friend Kara called, and I’ve already had my therapy session! ha!

But no, for real.  Things have not been great.  I have been struggling – physically, mentally, emotionally.  I think the last time I wrote was after coming home from Costa Rica – things weren’t great then, and they have not improved.  I have pain; my fatigue is incomprehensible; my appetite is not good and I’ve lost weight.  I’m angry and guilty and heart-broken because I can’t do what I want to do – everything is hard.  I mean simple things, too, like getting Xander ready for bed, or making a quick meal.

And it is so hard to know what is causing what – is it the Lynparza? The cancer? Are the pain meds making me super groggy?  A combination of everything?

Oh, and I started radiation last week.  See, in the beginning of January I had a scan that showed progression, especially in lymph nodes in my abdomen.  Long story short, we are radiating those SOBs.  The goal for radiation is 1) help reduce some back/abdominal pain, and 2) combining radiation with PARP inhibitors (Lynparza) and/or immunotherapy (Opdivo – that’s the infusion I’m getting once a month) could help my immune system recognize that ALL cancer cells are bad…not just the ones in those lymph nodes.  I have four more radiation treatments.  Yesterday and the day before they made me throw up, but today I took ALL of the anti-nausea meds and so far so good. (I’m just waiting for the constipation to kick in now. ha.)

I’m a disaster.  I find myself sobbing every day.  For myself, sure.  For my mom and Tim.  But mostly for Alexander.  I can’t be the mommy I always saw myself being.  I keep trying to find new ways to spend time with him that show him how much I love him.  I just don’t want him to always think of me as “sick mommy” or “tired mommy”.  He has seen me cry and has heard my worries more times than I care to admit.  I wonder if all of this is going to hurt him in the long run.  I wonder how many times a heart can break before it completely stops.  And I wonder if it will ever get better.

Thing is, no matter what the end result, I suppose this is temporary.  But I sure want to have some a bazillion better days here on this earth.  I want to take my kid for a walk and cannon-ball into a pool with him.  I want to cook a meal for my husband without having to sit down to rest.  I want to laugh with my best girlfriends and I want to get a little tipsy drinking wine and I want to read a good book on the beach and I want to dance to Disney music in the kitchen with Xander and I want to take my mom on a fabulous trip.  I want the old Maria back.  I sure do miss her, and I’m pretty sure everyone else around me does, too.

I wish this post could have a little more joy in it, but I don’t have the energy to pretend; also, I’m sure you appreciate the honesty.

People always ask how they can help.  Right now we somehow have an influx of food in the fridge and freezer from wonderful family and friends.  I have recruited a handful of energetic, retired friends to drive my butt to and from radiation and appointments.  So we are good there at the moment.  But if you live near my mom or Liz or Thomas, you can give them a gas card or something to help with all of the traveling back and forth.  You can shoot me a text to figure out a day to come visit – because I still like people.  And you can check out this website about Thea Bowman.  She’s up for becoming a saint, but needs a couple of miracles.  It’s a Catholic thing, but the idea is to pray that God works through her.

I’ll try to post again soon.  xox

11 thoughts on “A Bazillion Better Days

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  1. I am so sorry to hear about your struggles! It really sucks. Even though I don’t comment often, I still read your posts. Maria, you are a very strong woman and I want you to fight this beast with everything you have!!! Do not, DO NOT give in to it mentally or physically. And don’t fret about Xander. Even at his level, he can see that you are being the best mommy, HIS mommy, that you can be. You know that being a mommy is more than doing cannonballs into the pool. Being the mommy you currently are is what is most important right now. And taking care of yourself first is very important in the long run. Although there is much that is not good in your life right now, I am sure, as God is my witness, that you are being a blessing to many people. Remember that.

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  2. Love you and your honesty! Stay strong and remember that Alexander loves you because you are you, his best Mommy! The new Maria as you put it is a stronger, braver version of the old Maria.

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  3. I am so sorry to hear that things aren’t going well right now. I hope that you find more of that old Maria energy after the radiation treatments are over. In the meantime, take care of yourself and cuddle Alexander as much as you can. As always, you’re in my thoughts and prayers.

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  4. Maria,

    I do appreciate the honesty because I love you and want to know your real feelings and how you are honestly doing, so thankful for your honesty, even though I know it was hard for you to do!

    As you know, I’m on the road but would truly appreciate you moms address!

    Stay as strong as you can and rest as much as you can!

    Love you – Andi

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  5. You and your family are always in my prayers Maria. Thank you so much for letting us into your life and letting us know how things are going so we can push that power of prayer and let you know that you are one amazing and beautiful human being. I knew that a long time ago when I met you, and that person is still here now, although a bit exhausted at times. A person can’t appreciate good times if there are no bad times to compare them to, and although you have certainly had more than I can begin to comprehend, know that there are more good times to come. You will be all the things that you wish to be, to all the people you love. Please try to remember in those times of doubt and we will all continue to pray for your strength and healing.

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  6. Maria,

    I feel anything I could say couldn’t truly express my admiration for you. You are an example of strength and determination. Alexander sees it and knows it; and I bet you in his eyes; in my eyes; in everyones eyes YOU are the best mommy EVER. Regardless, of the situation I think we are always second guessing ourselves as mothers; but then we realize how imperfectly-perfect we are. He won’t remember the things you couldn’t do; but your strength,
    determination, your passion for EVERYTHING you do, and most importantly the love that you are always giving. Little boys think very highly of their mommy’s. Every day, every second counts; and you my friend make long lasting impressions and memories; you have touch so many lifes and will continue doing so. Everything you do and your presence moves us. I wish we could all give you some energy, that we could put in a bank for you everything single thing you need to heal & kick this illness butt once and for all! ❤️ You!

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  7. I’m so sorry that you have to go through all these struggles. Praying for God to give you a miracle but in the meantime grace for each day ! You are a wonderful mom and I truly believe that Alexander will grow up to be an even braver , compassionate and wonderful human being b/c of what he is watching you go through ! 🙏☀️💕

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  8. You know I have you in my prayers daily, with the white light of hope, courage and healing surrounding you! ❤️

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  9. Your mom is a high school classmates of mine and we both attended the same church growing up. When I heard of your struggle with cancer, I added you to my prayer list. You have been there for a long time. God has plans for you that you probably don’t even know yet. Have faith in His ultimate design even though you may not understand what it is right now. Your courage and determination are amazing. Hopefully your most recent treatments will eventually help you to heal from this horrible disease. You are a true inspiration.

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