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

Update - chemo #3/14

"Surrender is true love. The more we surrender, the more we love God and souls...There is no limit to God's love." Mother Teresa

This was the theme of my prayer today. I will say it's been hard to start fighting all over again - tough to take walks (I make it up our street now) - tough to eat when I have no real appetite. I weigh 146 lbs now - a full 20 lbs less than this date last year. I never had a working GI tract during my last 12 rounds of chemo...and I've been surprised at how nauseas I've been after the last 2 chemo treatments. If you know me at all, you know I have a major aversion to vomit. Sadly, I've become a major "vomit-er" and think it might even be my brain rebelling on me.

And it's been equally hard to return to anything like my previous (to the hospital stay) prayer life. I feel as though I am stumbling through a limbo period. I want to hope. I want to trust. I want to believe with my whole heart.

I realized today that this is my challenge to surrender. That it's not some major act of my will. Surrender is accepting that I can't do any of what I listed. It just doesn't come. Not right now.

So I sit through my prayer times and I cry. And I remember that Mother Teresa didn't hear God's voice for many years. But all of those miracles still happened when she asked because she must have just closed her eyes and said, "God will take care of it." And she kept living the life He had asked her to live years before His silence.

I still have a big life even in this ridiculous pandemic.

As life slowly starts to open and our country experiences tragedy after tragedy (God bless the soul of George Floyd and bring peace and justice for his family), I will continue to pray and to cry out that I understand that there truly is no limit to God's love. And that will be enough.

 

Radiation

"I have never heard [God] speak, but I feel that he is in me, that at every moment he is guiding me, inspiring me with what I should say or do. Just when I need it I discover lights that I had not seen before. It is not usually during my prayer that they are most abundant but rather amidst my daily occupations."  St. Therese of Lisieux 

Today I had an appointment with a radiologist. Because of the pain in my hip (the spread), my oncologist recommended I have a consultation with the doctor who would perform the radiation. Shawn and I were able to both meet with her - even in this time of quarantine - which was one of our prayers. The other prayer was that we would know what to do about the radiation. We didn't really understand it or what the point was.

It is interesting to me that radiation is mainly (almost entirely) for pain management. At least, that is the only reason I would be receiving radiation. I do have considerable pain in my hip, but I am hoping (and it happened before) that the chemo will both stop the spread and dull the pain.

What was hopeful for me is that the radiologist agreed with me that I should go through this next treatment of chemo and see what happens. "There is no rush to radiation" was the direct quote. Also, the doctor said, "It's important for me to see the patient and looking at you, I would only plan on one treatment of radiation. Looking at your history of these last few months, I am surprised at how great you look."

Since hearing that my cancer is more aggressive than anyone thought, we have been fighting the only way we know how. We are praying harder than we ever have, I've started all of the repurposed drugs again and I've been walking daily and reaching out to friends. My dear friend, Father Nathan, told me to remember that it's the devil who tries to keep us separate and so I'm trying my best to remember how I'm "surrounded by so great a cloud of witnesses." My sweet boys and Shawn and being wonderful and I'm slowly connecting to people outside our little circle.

It was a light to me to have such a good meeting with the radiologist today. I know God was there. I am also challenging myself every morning to have 15 minutes of silence where I just sit with God. I am live-streaming Adoration to do this, but I think it can work in any context.

Because I want to trust like Therese of Lisieux. I need guidance and inspiration...now more than ever.

Scan and sickness updates and the End of School

Our eldest finishes Elementary school today - last day of classroom instruction for 8th graders at his school. We are all pretty excited about it and especially, D. It is so strange not to know what the fall holds and how the beginning of High School might be for him.

Stupid pandemic. I don't know about you, but I'm done with this whole thing.

Late posting of my last GI scan results: it looks like my GI tract is healing - PRAISE GOD - and I can now eat real foods and use my bottom like regular people. I mean, seriously, PRAISE GOD. I am still on the evening liquid nutrition and an every-8-hour IV which I receive through a pick line. Pick lines are similar to ports and everything that is administered goes straight into my blood stream. Shawn is responsible for connecting all of these things. We pray every night that we are almost done with my extra attachments.

A healthy GI also means I was able to have chemo last Thursday. Sadly, in the time it took to heal, most of my cancer has returned. Not the rectal tumor, ironically and gladly. A girl can only talk about her rectum so much. But that hip met (spread) has become a real problem. Please pray (or send positive thoughts) that my chemo can catch up with the cancer.  The chemo worked powerfully for me the last time, so there is still a lot of hope around here. I have also begun the repurposed medicine again which should work powerfully with the chemo.

Simultaneously, Shawn and I (and often our boys) pray the Rosary daily for my healing. I live-stream the prayer ministry of the Intercessors of the Holy Trinity on Tuesday nights. I have begun the Surrender Novena again because we believe that Jesus can heal me totally. I am not the kind of girl who can say that this means He will, because I know that people die. But He can and I will beg that He Does so that I can stay here with my boys and the Love of my Heart.

In all of this, I am most grateful to be at home and to be in a place that I am loved and cared for so well. I wish we could travel and spend time with the people we miss so much. We miss our extended families. We miss our friends.

We are praying for everyone who reads the blog and I beg you to pray for me and our family. God is Good and Loves us. Jesus, I trust in You.

A Busy week of medical action

I can't believe that it's already Tuesday. Time flies quickly When you're sitting around in your pajamas and not eating :)

But this week is ramping up. I had a tele-appointment with my GI doctor on Monday. Shawn says that he was very positive, but it's hard for me to interpret anything at this point. My home health nurse came today to take blood and vitals. She is wonderful and chatty and I really appreciate when she is here. Of course, I love my full-time nurse, Shawn, even more.

Tomorrow (Wed) I have yet another CT (ie: CAT) scan. This scan will hopefully say that I do not have any more internal "leaking" and will perhaps be able to eat a liquid diet. Worst case, I will get a third drain if there are any pockets of fluid where they aren't supposed to be.

In either case, I have chemo on Thursday. I'm honestly not sure how my body will do with all of these tests and treatments.

I totally appreciate the prayers and everyone who has reached out with encouragement.

This entire experience has opened my heart so much more to people who are struggling/suffering and who also find it hard to trust God. That has been my only prayer, that I can trust God and believe that His love is bigger than all of this. It's scary and sometimes painful...but I am choosing Trust.

Thank you for your prayers in advance (TIA, like the kids say).

Home

I am not sure too many people are still reading this blog and the seeming saga of my hospitalizations. Thank you for checking and for reading what seems to be a broken record of health issues.

I was finally released from the hospital this last time on Friday, the 24th. I haven't counted and reviewed but I think I was in the hospital for 15 days total. The pandemic went on around me but I haven't been too much a part of it. Or my boys' homeschooling, or cooking or baking. It has been the strangest time of my entire life.

I have been assured that my body is having what are considered "normal" complications. These complications would be "waited out" and "watched" until they were better in most healthy people. Sadly, because I have cancer, I am not considered healthy and the doctors are working quickly to enable me to get back to chemo. So I have a strange existence right now.

I cannot eat any food so that my digestive system rests. This means that I have large bags of liquid nutrition connected through an IV (pic line) that are my nutrition for the day. I am only connected to the bag for 12 hours at night (Nurse Shawn takes care of all of this, by the way) and I am starving but the rumor is that this decreases as my body gets used to not eating. The last timeline for how long this will go is 6 weeks...but I'm not sure.

I have an IV antibiotic that I take once a day. I have two drains placed inside my body to get rid of anything that could cause a blockage or abscess. There is a chance I will get a third drain next week. This is all to make sure I don't have to go back to the hospital for more surgery.

And I have to walk 40-50 minutes a day to make sure everything is working properly.

I go back to chemo next Thursday - most likely 1/2 strength chemo as they test my body's resilience.

Right now, our lives are telemedicine appointments, a few returns to the hospital (for tests) or my GI doctor's office and negotiating our boys' behavior as they grow slowly more and more sick of each other.

Through it all, it has been Shawn who is our rock in this situation. He leads our prayers every morning. He remains so incredibly positive through every appointment and change. He does everything. I am so grateful for him and can't believe what a gift he is.

Staying a bit longer

I will be staying in the hospital for a few more days. The doctor had me get another CT scan this morning to make sure that everything is working correctly. It’s going a bit more slowly than the doctor wants. So, I’ll be here at least another day.

Please pray. I miss Shawn and the boys so much it hurts.

More tomorrow if I hear more.

Jesus I trust in you.

Still here - Courage!!

I think that could be the name of a song for BOTH this pandemic and my stay in the hospital - “still here.” Go ahead, rock stars, write a song that we can listen to after all of this.

So, I’m still in the hospital, still blogging from my little phone. But rest assured that I feel 100% better if I’m communicating at all! This third surgery (I’ve heard a lot of “third times the charm!”- this surgery recovery has been  totally different from the last two. I feel like myself. I’m strong in my (painful) walks and things are “coming on line” a bit faster. I’ll still be here until Monday, but that’s better than all week! And mainly because my doctor wants me on solid foods before I leave.

The nurses and I were already friendly...now I’m like their “hospital mother” and they come in to chat about life. It’s all the same nurses and I’m on the same general surgery floor, so it’s a bit deja vu-y.  I am still trying to figure out what to send them all after I’m out. They work so hard on “the non-covid” patients, they deserve a lot.

Thank you all for your prayers during this. I really can tell I’ve got some heavy-hitting prayers going up this time. It’s a totally different experience physically even as it’s exactly the same in every other aspect. I trust that this is it. I trust I’ll get back to my boys and my life.

Maybe just in time for the governor to reinstate play dates. My boys could REALLY use a play date that doesn’t involve a game on a screen.

Back in the hospital (surgery 3)

Well...I’m Back in the hospital until-at least, Monday. I’m typin on my small phone, so please bear with me. This week had another ramping up of weird symptoms, so Dr Nandi had to go back in to see what was wrong.

Part of me thinks I’m going to spend more than 1/2 of this quarantine in th hospital! How I miss my friends and family.  But especially Shawn and my boys.

I think we’re all praying/hoping this will all be  over soon. My prayer is no different-that I start to feel normal ASAP.

Jesus, I trust in you. Your will is always best, even when I don’t understand.

Ps be happy to be with your kids and that you can eat Easter candy and pantry food. I haven’t been able to eat regular food for almost a month.