1.27.2020

Cancer ... Where Are We Now?



It has almost four months since we came home from the hospital and I haven’t really updated you on all the things happening. As you may recall the first four weeks were a lot to deal with and then the second four weeks were better as the bigger drain came out and he was released to go back to work. He continues to heal from surgery and, although the major issues are all gone and he is so much stronger, there is still some recovery happening. I can recall when he first came home and could barely walk on his own and didn’t eat but a tiny bit thinking it would take months to see him strong again and now almost four months later he is that strong. God is so faithful and so good. There is no other words I can say. He is a miracle.


When he was diagnosed with cancer we were told by our oncologist that we would take the chemo for about 9 to 12 months and wait until the tumor stopped shrinking, have surgery, and then see if he needed more chemo after. It was discussed it was most likely but I am a girl who always hopes and I hoped he would not need it. Our original oncologist moved six months into treatment and our new oncologist shared with us that the protocol for the size of his tumor plus the kind of cancer is chemo for a certain amount of time, no matter what the outcome of surgery. When his surgeon was so excited about his clear margins and the condition of his tumor I held out such hope we would be done. My mind kept thinking about all he had endured, all his body went through and I just felt that chemo for any length of time after recovery was just not a good idea. I still feel that way, but I’m not a specialist and the doctor is sure this is the best plan.

So, he is back on chemo. He takes a daily pill which wreaks havoc on his body. He’s tired, he aches, he can get nauseous, among some other issues. Yes, it isn’t infusion chemotherapy and it’s an incredible blessing it is just a pill, but it’s still hard to take and hard to manage. Simply put, it is hard. He started taking it the evening of my birthday and within a few hours felt bad all over again and I was crushed. I hate it for him. I wish I could take the pills for him and have his body be protected.

I wish all the things ... it’s not reality.

So far with the exception of the physical side effects his blood draws have been fantastic. His white and red blood cell counts are holding, his kidneys, heart and liver are well. From the time we watched his numbers like the stock market this feels magical. He is protected and I am very aware of Gods presence with both of us daily. This isn’t the way I wanted it to play out ... but it is still good.

I know I have mentioned it before but I will share again. He had a soft cell sarcoma tumor ... a GIST ... that was very large in size attached to his stomach. The tumor was made of mutated gastrointestinal cells and his cell was called a wild cell, an even more rare kind. During surgery they removed the much smaller tumor plus 40 percent of his stomach and reattached his remaining stomach to his small intestine, so things work different than they did before. I think part of his issues now stem from his body being different. He weighs a lot less, his stomach is much smaller and his gut functions differently. It is all part of the puzzle.

The plan is to take the chemo for a total of three years and his initial round was about 14 months so the math leaves us with 22 months left. We are three weeks in so we are currently at 21 months and 1 week, and yes I will count every single day til he is clear of it all.

He is strong. He is the strongest person I know and the most focused. He is working full time and more hours than he did when he left. His new office (new project) is further from home than his last one so he now has a train ride to factor in. He never complains. I am, as always, in awe of his commitment to it all.

How am I? All in all I’m good. It’s a journey with my therapist as I recover from all the trauma and the emotions. The anxiety is still really high, but I am aware of how to better take care of me. It is a daily focus and I am doing the hard work. It isn’t easy and I so wish it was different ... but I will be thankful for all the help for ever. I have learned a lot about expectations (don’t have them) and grace (we all need so much more) and I will continue to work to get back to a new normal. Last week was hard and dark and I struggled more than I have. But it was also last week and this week I am feeling better and aware of why it is hard. I am choosing to talk about it to give it no power over me and it is helping. Watching him be sick and work so hard worries me. Worry feels like something will go wrong which feels like trauma and it is a circle back to all the emotions I am trying to manage. I don’t need to be worried I need to just take care of me, pray for both of us and let it happen. He will he safe and I will trust.

Thank you for your never ending support of both of us. It’s been a journey and it clearly isn’t over. What I love most is seeing him smile at me when he is home and having all of us together to do daily life. I am so aware of what a true gift it is. I am thankful to have a protocol to help him be cancer free. I am thankful there is a targeted drug for his cancer cell. I am so thankful he has recovered from surgery and that is behind us. I am thankful he is healing and will be done with this in a matter of time. I am thankful we don’t do it alone.

The rest is just the middle part and that I turn over to Jesus to manage. ❤

8 comments:

  1. Sweet Paige, Thank you for sharing this very raw look at the recovery process. Sending love and hugs your way as well as continued prayers for strength and healing.

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  2. I hope he continues to heal and that the medicine does its job. Hang in there, girl. You are stronger than you think.

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  3. Love reading about your faithfulness, real-life emotions, and hope. You have a small army praying love and healing over all of you.

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  4. GOD is good and he has his arms wrapped around all of you! Continue to be his rock. we all will be your rock and continue to pray for you and your family! Much Love

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  5. Thank you for sharing your heart and your journey. Prayers for you and your husband. I'm caring for my dad who has pancreatic cancer and lives in our home...it's refreshing to read how others are handling this cancer journey, as well. So many of your experiences are similar to ours. Blessings to you and yours.

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  6. Thank you for sharing so honestly. Praying you all see (and hear and feel) all the new mercies each morning.

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  7. Your determination is inspiring. Bless you.

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  8. Wishing you and your husband all good things during his recovery and the many, love filled years ahead.

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