Day 5 of the new drug protocol

First, thank you for the posts and the messages. You are all so encouraging and I am beyond grateful to have words of hope from new friend, old friends and complete strangers. Welcome into my world of crazy.

I began the new chemo drugs (orally) on Thursday. The only big complication has been that I get fairly sick after taking all 17 drugs (or more depending on the day), so I have added Zofran (an anti-nausea drug) 30 minutes before I take the drugs with milk.  It's only been 5 days, so there are no big changes.

My best news is that my friend/acquaintance who is also on these meds just let me know that there was "TREMENDOUS improvement" in her scans. I do not have details yet but she was very excited. Literally nothing has worked for her up to this point. Only this drug regimen. So I have hope.

I have been trying very hard to pray. Shawn and I are still saying the Rosary every day, but I struggle to talk to Jesus when I feel so bad. But, today I prayed and this was the Psalm read at Mass today:

PSALMS 34:2-9

1I will bless the LORD at all times; his praise shall continually be in my mouth. 2My soul makes its boast in the LORD; let the afflicted hear and be glad. 3O magnify the LORD with me, and let us exalt his name together! 4I sought the LORD, and he answered me, and delivered me from all my fears. 5Look to him, and be radiant; so your faces shall never be ashamed. 6This poor man cried, and the LORD heard him, and saved him out of all his troubles. 7The angel of the LORD encamps around those who fear him, and delivers them. 8O taste and see that the LORD is good! Happy is the man who takes refuge in him!

...My soul boasts in the Lord; I feel afflicted but I will hear and be glad...I have a message of hope today and I am surrounded by love. 

And to totally change the subject, Just a couple of quick photos of more covid-crazy happening at our house. It's good to laugh sometimes!!

Update a litte late

Thank you for your patience with this update. I've been getting a lot of texts asking how everything is going and so I know that I'm moving a little too slowly with posts.

It's been quite a couple of weeks.

First, I have to let everyone know that my latest scans were "disappointing" (read "not good"). The cancer has grown and spread a bit which means that the chemo that had worked so well all year is no longer working. Sadly, this is what everyone expects when it comes to chemo. But we were still bummed.

Also, a small sadness is that the tiny hole I have in my intestines (hence, the drain) is healing but not healed...so I still have my buddy the drain. Even though it's not draining anything. I have to wait 4 weeks to have it tested again.

So, because of my scan results, Dr. NP (my oncologist) recommended a new type of chemo (there are about 4 lines of chemo total). I didn't have a treatment this week because we've been discussing all of this. Shawn and I immediately started to pray.  I have been praying a novena (9 consecutive days of prayers) to the Sacred Heart of Jesus.

It's another Catholic thing that we believe that Jesus' heart burns with love for the entire world. The image that is used is a heart surrounded by a crown of thorns with flames coming from the top of Jesus' heart. The Sacred Heart has always been incredibly special to me. The idea that Jesus burns with love for me has always given me hope. So, it was natural that I would pray the novena leading up to the Feast of the Sacred Heart (that was celebrated last Friday).

On Friday, Shawn and I talked to Dr Cantrell (my repurposed drug oncologist) and he recommended a completely different protocol of chemo drugs that he's been seeing incredible success with his patients. I have an acquaintance who is also working with Dr Cantrell (I recommended him to her) and she has been on this protocol for 11 weeks. I called her to hear what her experience has been. In that time, her pain (that was debilitating) has completely disappeared. She has scans this coming Friday but she - along with a number of Dr C's other patients - feels like she has her life back after starting this regimen.

We decided that I will try Dr Cantrell's regimen first. A major bonus is that these are oral chemo meds I'll be taking and the side effects are way less. No more 6 days of sickness for these two months as we wait and see how it all works.

And if it doesn't work, we have already met with Dr NP and she will still be working with us and meeting with me every two weeks to see what's happening and how everything is going. Dr NP is so humble and open. She expressed her concerns with us but was and is very open to Dr C's protocol. She's actually going to call him to discuss the plan.

Still, I am stepping into the breach and doing something new and different. There is not a lot of data. There are only a few success stories (not any failures, though). It would be wonderful to feel more like I did in December.

We are choosing to trust. Obviously, the entire situation is scary. But we are praying every day and asking for God's Will and trusting that it will be the best. And I'm hoping that my hair will grow back while I take this different chemo.

One year anniversary of diagnosis

I was first diagnosed with cancer on June 14th of last year. So much has happened in the world lately that I can't even say if it's gone quickly or slowly.

I can say how grateful I am to still be alive.

We went to the cabin Sunday. It was really great. Just sitting in the beauty makes me feel closer to God.

This week is incredibly medically busy. I have a PET scan tomorrow to see how everything is working. Wednesday, I have a check of the drain I've been wearing for a few months. Hopefully, what ever was wrong is totally healed and I'll have the drain removed. Thursday, another round of chemo.

Shawn and I have been reflecting on the changes of this one month with my health. I am still working hard to build my strength, but I am doing much better than even a month ago. This gives me hope. I was able to ride a 4-wheeler today and help do some dishes...
So I go that going for me.

Jesus, I trust in You. Mary, please pray for me.

Chemo #15 + 6 days

Thank you, Thank you for all of your prayers!! Thank you for the texts and emails and flowers and a very special book I am starting to read...and thank you to Michelle for this:

The mystery is solved and chemo is definitely causing my nausea. Woo-ee did it not get better this round. And I am a baby, so I complained about it a lot (and cried like said baby) to my husband. But, true to form, after about 6 days, I am feeling better and ate semi-regularly and was able to take all of my meds and walk up the street (such a warrior).

Here's a recent photo of myself. I post this because I am vain and I am not looking great. But I'm smiling and outside (above ground and eating solid food). Also, I just want to attest that almost everything I valued about my pre-cancer life (that was about myself) has turned out to mean nothing to me. I just want to BE HERE. So, here I am. 

I read the most grammatically awkward (but really beautiful in meaning) quote today on the rc daily mediation: 

God the Father is incapable of not desiring what is truly best for us. God is and will always be love.

God is INCAPABLE of desiring anything but the best for us. It is outside of His nature.
Trust me, as I sit here with wonky bowels and spots of cancer in important places with young sons and a husband who desperately loves me, I can think, "How can this be best?" I know that everyone reading this has suffered something that does not seem best...

...but God is and will always be love. I have had to remind myself of this over and over these past six days.

And then something will happen and a tiny prayer is answered - one I only whisper. I'll see (or speak to) an old friend and they will remind me that I am an incredibly blessed woman. I'll read a post on social media and feel sorry for someone else. Me. the woman with stage 4 cancer. And I'll realize that I have come to desire only what is truly best for these friends and semi-strangers who I barely know.

I'm just glad I don't need to decide what that is.

God is and will always be love.

And now I need to go help discipline my children who continue in the COVID-lockdown crazy,

Back to chemo tomorrow

First, Thank you everyone for the outpouring of love and support and prayers I've been receiving. I am teary eyed every time I read a text or email or IM. I just thank God for the people who surround me even if we don't really know each other.

It helps more than I can say as I prepare for chemo tomorrow.

I will most likely not post for the next 4 or 5 days but I will know that you are praying and that I have a firm hope.

It is such a strange tine right now in our world. But I have experienced a great outpouring of love. Thank you so much and talk soon,

B