6 month update and repurposed drug info

It's hard to believe that six months have gone by since I received my diagnosis of Stage IV (4) colorectal cancer. Time has gone very quickly and our world has changed completely in such a small amount of time.

I am writing this "recap" for people who might be new to the blog (after Christmas cards) and for people like me who simply cannot or do not read blogs regularly (I feel you).

1. I originally was diagnosed with rectal cancer after a year of thinking "something's kinda wrong" and few months of thinking I had the world's worst hemorrhoids (PSA to get to the doctor if you have any significant change in your bowl movements - gross but serious. Do not ignore your poop!)

2. When diagnosed, I had a significant tumor in my rectum (lowest part of the colon); two lymph nodes were effected; there were two spots of cancer spread in my liver; three spots of spread in my left hip; and "innumerable" spots in my lungs which could not be diagnosed because they were so small.  No one said so, but I have since learned that my cancer was mutating quickly and was very aggressive. A couple of doctors gave dire warnings as to my prognosis.

3. I had surgery to "divert" my colon (ie: my poop) which has left me with a (currently temporary) ostomy bag.  (so far, my least favorite part of this entire thing)

4. A friend from Church sent us this link in the first week of my diagnosis: https://www.mycancerstory.rocks (please click on the link if interested). This site details the story of a man named Joe Tippens who was cured (has been NED for over 2 years) of stage IV lung cancer by taking a dog dewormer. To date, 100's of people have had significant help in fighting their cancers by taking this medicine. Shawn and I researched and decided "what could it hurt?", ordered the med from Amazon and I took it for 24 weeks (until very recently). I do believe that this helped chemo kill my cancer in a positive way that was unexpected by my doctors.

5. I have undergone 11 rounds of every-two-weeks chemotherapy (Oxaliplatin, 5FU and Avastin). God-willing, my 12th and final chemo treatment will be Jan. 9th, 2020. There can be some significant side effects from these (I've since learned) intense drugs. For reference, these are the same drugs given to those suffering with pancreatic cancer (my current chemo "guys-club"). I have constant cold-sensitivity (basically, when I touch anything cold it's like fiberglass scraping my hands and feet); my hair has thinned to baby hair (not bald but not really having hair); and after the last treatment, I have signs of some nerve damage in my legs, feet and fingertips (which I'll discuss with my oncologist Thursday). I will take the one bonus that I've lost over 20 lbs in these 6 months...but it's not a diet plan I'd suggest.

6. There is a healing ministry that meets every Tuesday here in Denver - the Intercessors of the Holy Trinity - and I went even though this isn't entirely my thing (I was feeling very hopeless). We had to choose a random person to pray with and I chose a stranger and started praying quietly next to her (here's where it gets crazy). I closed my eyes and "saw" Jesus standing in front of this woman and rays from His heart pouring into this woman's stomach (like the Divine Mercy image). I bent down to tell this to her (thinking I was insane, honestly) and she stared up at me and said," I had stage 4 colon cancer and Jesus healed me because I prayed the Divine Mercy chaplet every day." I said, "I have stage 4 colon cancer." and she said, "Jesus (the Divine Mercy) must want to heal you too." I said, "I think you might be right." From that moment on, I have believed I will live.

6. **Good news alert** After my first 4 rounds of chemo, my scans showed that the spread to my liver was gone, my rectal tumor had shrunk almost in half and my lungs were not cancer...just "gunk" probably from living in both a steel mill town (college) and Southern California (sorry, Ca friends). The hip spread and lymph nodes were still there...but shrinking. **More Good News** the scan after 8 rounds of treatment (more like 10 as it was late) has shown that my lymph nodes are resolved (not cancer), my liver spread is still gone, and my rectal tumor can not be seen (no cancer activity). The spots in my hip have shrunk considerably and we are assuming it's cancer (but might be healing - it's hard to tell with bone mets - another word for spread). Long story short (too late), the only remaining spots which are probably cancer are three tiny spots in my left hip.

7. I now go into a period known as a "chemo break" where I won't have chemo for an (unclear) amount of time. It's notably a period where I may have surgery to (a) remove the part of my rectum that was cancerous and (b) have the ostomy bag reversed (please, God, let this be so). And then the standard of thought is that I will return to chemo in some form for the rest of my life aka: until the chemo stops working and I die.

8. If you know me, you will know that I research. I read. I fight. I follow my gut. Throughout all of this, my gut has screamed: "There must be another way." Chemotherapy has been used to treat cancer since world war II. At first, mustard gas was used to treat lymphoma (blood cancer). There have been advancements and some additions, but no clear cures. In fact, doctors don't use the phrase "cured of cancer" anymore because the general medical belief is that it will most likely come back (especially for stages 3 and 4). You don't learn that until you or someone you love has cancer (and don't get me started on how much money there is surrounding the cancer treatment world).  When I considered that HIV has basically been brought to the level of a chronic disease (and not death sentence) since the 1980's, I started to question why it is taking so long with cancer (at least some of the cancers). And I started to look for doctors and individuals doing it differently.

9. And so...I found that there have been 15 to 20 years of research going into "repurposed drug use in curing cancer" (slowly going because there's no money in it). If you Google "repurposed drugs for cancer" you will find a lot of information. Basically, repurposed drugs are drugs that are FDA approved to treat a different medical condition but have since been found to also be powerful at fighting cancer or its spread.

10. The most recognized individual regarding repurposed drugs is a woman named Jane McClelland. From 1994 until 2004, Jane battled two aggressive cancers with metastatic spread, both were classed as ‘terminal’. Using her medical knowledge and researching heavily, she put together a cancer-starving formula, using natural therapies, exercise and diet. When she developed a second cancer, leukaemia, the result of chemotherapy and radiotherapy for her first cancer, she knew she only had weeks to live. With nothing to lose, she put together a unique cocktail of old drugs. To her enormous relief, joy and surprise, her cancer just ‘melted away’. Her cocktail was more powerful than she had ever hoped.

11. Shawn and I began to research doctors who are having success treating cancer with repurposed drugs. There are a number of places we looked into. Shawn (being an engineer) wanted data - cold, hard facts that this treatment is working.  Eventually, we settled (felt led) to Dr. Stephen Cantrell in Nashville, TN --http://www.neoplas.org - We went to visit doctor Cantrell right before Christmas and we were so impressed and excited with all he has done/is doing. I have been taking his protocol of drugs for three weeks now and will have scans in February to see how it is all working. We will visit Dr. Cantrell again in March and that is when we will make final decisions about surgeries and whether I will continue with chemo (the next step is probably pill-form chemo). My prayer is that repurposed drugs will be all the maintenance I need for the rest of my life.

 Here is a pic of the new drugs I am taking. There will be another added after chemo. 

I have a large number of pills to take (with supplements included), so Dr. Cantrell recommended daily containers to hold it all and keep me on a schedule. 7 large stacks of pills every day. I pray this is my future (because - no side effects and HAIR!). If it is the plan of God, this regimen could keep me healthy and happy and working hard for 20+ years (the longest patient still going strong at 20 years and 7 months!) 

Chemo #10 +1 day!!

All this week, I have been asking God that I would like to have the energy to do daily prayer and just be available for the boys (I missed them in other chemos when I would spend days sleeping/resting).

I can say 100% that He answered this prayer.

I didn't spend all day sleeping yesterday (I slept through all of the chemo, though). I rested a lot but I was able to talk with the boys and hear about their days. I didn't feel totally sick when I was awake and the side-effects are similar to all previous treatments but - somehow - I have energy.

Last night, the boys crowded around Shawn and I on our bed and we read Luke 5 (we are reading 1 chapter from Luke all through Lent. There are 24 chapters, so it will end just in time). It was a grace that it was a shorter, readable chapter and each of the boys offered to read a section.

I was totally struck by verses 12 & 13:

Now there was a man full of leprosy in one of the towns where he was; and when he saw Jesus, he fell prostrate, pleaded with him, and said, "Lord, if you wish, you can make me clean."  Jesus stretched out his hand, touched him, and said, "I do will it. Be made clean." And the leprosy left him immediately.

"Coincidentally", I read about 30 short Bible verses about healing every day. They are printed out on filing cards and I flip through then and hope to memorize them eventually.  It's how I begin my prayer time.  Two of these verses are Luke 5: 13 &14 and I have a note underneath the verses that says, "Jesus has never changed. He is the same Jesus who healed this man. He will heal me too."

I think we start to imagine that Jesus is a story book character, like Peter Pan, Tom Sawyer, or Harry Potter (if we think about Jesus at all). He was this nice guy a long time ago who loved everyone, said some pretty good things and was crucified and then we're just not sure.  Even many Catholics and Christians I know live as though Jesus is a character in their life story...but not that He is a living supernatural being who is still acting powerfully in our world. I know that I had fallen a bit into this thinking. Or, I was just not really thinking about it at all... Doing the best I could, living a busy life, expecting it to just keep going the way it was.

I think Jesus wants much more from me. He wants me to know that He is ALIVE. That my last post was that I would just "lay at the feet of Jesus" and trust and then, the next day the verse was a leper who "fell prostrate" (at the feet of Jesus) and was cured. I can't make this stuff up. It is my lived reality.

Jesus is the same. Always. We are the ones changing, ignoring, choosing not to believe in miracles. But the best part is that Jesus doesn't care about our weaknesses. He keeps after us. He did not cause my cancer (all evil is from the devil or people cooperating with that evil), but I believe Jesus allowed this cancer so that I can proclaim miracles and love and that He wants to live forever with everyone. And as long as I lay at His feet and plead with him, He will grant what I ask out of love.

And I get the bonus of making dinner for my family and energy for things like this.

Thank you for everyone who reached out yesterday. I think that this love and care is as healing to me as everything else.

 I love blog pictures, so here are a few from this last week

Our advent calendars (the middle is marvel pop up figures, which are fun)

 C and Shawn & cousin Brady when to the Bronco/Charger game (W!) with our good friend/neighbors. 

 I celebrated a 2nd Birthday party for one of my closest girlies (who I know reads the blog so this is all love to you, K). 

 We decorated/argued as we put up Christmas decorations. But it was still fun.

He'll hate this pic but needed one of D! 

 Our advent prayer table

 Christmas chaos as we go!! 

12

Chemo #10 tomorrow

Today, I did 5 loads of laundry and totally cleaned out our office (last year's homeschool classroom). There was a time that those activities would have made me tired and irritated. Today, I am just so excited and happy to have that kind of energy. It was a total gift to spend the day working (with an added bonus of running a grammar book to school that was forgotten...that's still a little irritating, honestly).

I put a quick post on Facebook that I've lost my hair (well....that I'm mourning the loss of my hair). To be clear, I still have hair...but it is very thin. You can see my scalp through my hair. The pictures I post here are "Hollywood magic" because I am wearing a hair piece in most of them. My stylist (fancy name for hairdresser) bought, cut and colored a hair piece from a company called "hair U wear"  (click on the name to see what products they have). Julie (my stylist) is a total gem. I promise to do an actual post on the hair piece because it's pretty cool even if you don't have cancer hair loss. I'm totally keeping it so that I can look like a Kardashian post chemo.

Suffice it to say that most of the time, I walk around with a cap of some sort on my head (this is a sleeping cap:

The fake hair lets me look like this (FYI, all of the long darker hair is the hair piece...the thin light strands are mine: 

I love my stylist, Julie, and I am so grateful for her persistence in finding something that would make me feel confident when I want to dress up (or just ditch the cap). Even during cancer, I remain a princess at heart.

Tomorrow I will have my tenth chemo treatment. I have been mentally avoiding it and relishing the extra week off. I don't feel "better" per se, but I have had a lot of energy and drive to get things done (so I've done about 50% of what I planned - ha).

Today in prayer, I held on to these two readings. The first, from Hebrews 10:35 - "Therefore, do not throw away your confidence, which has a great reward..." and then a reading about Christmas from the Catechism (of the Catholic Church which is like our text book of what it means to be Catholic):

526. To become a child in relation to God is the condition for entering the Kingdom. For this, we must humble ourselves and become little. Even more: to become "children of God" we must be "born from above" or "born of God". Only when Christ is formed in us will the mystery of Christmas be fulfilled in us...

I will embrace chemo like a child. I will assume that there will be cartwheels someday and that healing is in my future. In today's Gospel (Matthew 15: 29-37) it says ..."They placed them at His feet and He cured them..." a good precursor for tomorrow. I still believe Jesus is healing people who are placed at His feet. That's me.

St M Faustina told Jesus that she wanted (782) "to worship you with my very weakness..." So, I might cling to my hair, but my weakness will be all for Christ.

(Chapter 4 of Luke and 4 mins of silence...)

Best Advent Ever & Listening

This morning, I am scrambling to get things done. SCRAMBLING. Because I know that I have chemo #10 in 3 days (Thurs.) and I will be out of it for at least 3 days after. It's making Christmas prep & house prep and "just.life." a bit more rushed.

Yes, I know I can just blow it off - that I have a great excuse this year to do way less. Ironically, all I want is to NOT blow everything off. I want to celebrate and love and buy great presents. I want to finish my "to do" list because I love every second I am able to do anything at all.

Because I had an extra week off from chemo, I also have more energy than normal and I am craving time with friends and family (it was so wonderful to spend time chatting with my cousin that I could only cry when she left. I was so grateful).

One quality I love in people is the ability to let other people speak. I have so many close friends who LOVE to chat and share. I love this about them...but something I've also noticed is that so many of them are also careful listeners. They share excitedly, but they also listen with love and know when to wait and just hear. My husband is really great about listening (duh, he married a woman who barely stops talking)...

This all leads to an Advent video I watched this morning. It's from the Best Advent Ever series by Matthew Kelly and it's wonderful. The theme of today is that "You have no idea of what you are capable of." If I could sum up my current spiritual state, it would sound just like this 3 minute video. If you click on the link below, you can watch it. I am really inspired...but peaceful too because I believe I am just where I am supposed to be and doing just what I'm called to do.

Best Advent Ever video


Chapter 2 of Luke today and 2 minutes of silence!!

Thankful and Advent plans

This will be a quick, picture-filled blog. It's very cold here (snowy the last few days) but any chemo side-effects have been calmed with fun and being surrounded by love. It's been so wonderful to have my cousin and her friends. Also, Thanksgiving with Shawn's side of the family (OUR family) was awesome. I have been feeling good (with some "bag" issues) but happy to have a week off from chemo!! 

Tomorrow, Sunday Dec. 1st, Advent begins. I wanted to ask anyone interested to join me (and our family) in reading one chapter from the Gospel of Luke for the month of December. There are 24 chapters, so you'll finish just in time for Christmas. Also, I'm going to have one minute of silence tomorrow and add a minute every day until I'm silent for 24 minutes on Christmas Eve. God speaks silence. This is a good chance to let him show you (and myself) He is there. If you are new to being silent, it's best to be silent in the way you were created. If you are a person who loves action, take a walk (with headphones maybe) and be totally silent while you walk. If you are "chatty" or "verbal", say the name Jesus (or God or Holy Spirit) when you are finding your mind wandering. Begin with asking God to "show me that you are real" and let your mind be as silent as possible. 

This is a quick recap of our past week. 

 Two days of snow and over a foot landed in our yard! 

 My cousin, S, loved us all up with her crazy chatty personality. 

 We had a few days of family togetherness thanks to snow days and Thanksgiving break! 

 S, her friend G and daughter, D came for dinner Wed (with our favorite Fr. Nathan also!) 

 I'll do a post this week on my favorite Christmas gift so far, extra hair (like a hair piece) from my stylist, Julie. Also loved spending time with my oldest boy! 

 Dinner Wed night 

 We also spent the day at the Cheyenne Mountain Zoo - one of our favorite places. 

 Click on this picture to see the Tiger between the boys. 

 Always fun having dinner with the Grady family for Thanksgiving. Here's Grandpa! 

 Traditional family picture. We're missing Uncle C, Aunt S and the babes.

 My gorgeous niece, P

 Two C's (they share a name) fooling around. 

 Love. 

S feeding giraffes and loving the animals! 

"We live as we pray" - Jacob's ladder and our hips

*This is long and philosophical - just a head's up*

This song has been a running soundtrack for me lately 

So, every day, the boys and I listen to a podcast on the way to school. It's called "Catholic Sprouts" and it's 8 minutes of really good stuff. I use it as our religion class since they attend a public school now. I'm not sure the boys are getting a lot out of it, but it's been amazing for me personally (and they are actually learning & praying a lot because of it). I wholeheartedly recommend it.  Podcast/website

This week the podcast has featured lessons on the Trinity and the short lessons have perfectly entwined with my personal prayer to the point where I feel like God is more real to me this week than my actual daily activities.  Case in point: Tuesday's lesson was on the immensity of God. Like, how we honestly can't wrap our brains around God (which is my guess as to why people refuse to believe He's real). She (the podcast speaker) used the story of St Augustine where St Gus was trying to figure out the Trinity while walking on a beach. He ran into a little boy who had dug a hole and was using a bucket to fill the hole with water. The boy would run to the water over and over to fill the hole. St Gus asked what he was doing and the boy said, "I'm trying to bring all the sea into this hole." Of course, St Augustine said, "That's impossible. The hole can't contain all that water." And the boy answered, "It is no more impossible than what you are trying to do - comprehend the immensity of the mystery of the Holy Trinity with your small intelligence." Then the boy disappeared. 

The podcast ended with a "challenge" to take 3 quiet minutes and picture the most immense thing we could think of. H and I both pictured the universe (although we can't really picture the reality of its size either). It was an incredibly important 3 minutes to me because I was also able to picture how incredibly small I am compared to anything as large as God. All of these concepts challenge me. I want to understand everything...but they also give me peace because I can accept how truly tiny I am and that my failings are just to be expected. God doesn't expect understanding. He just wants love and trust. And those two things are so hard for this typeA-child-who-can-study-and-understand-everything-just-try-me. Love and trust are challenges. 

Which brings me to Jacob. Jacob was the guy in the Bible who stole his older brother's birthright by tricking his dad (jerk); was tricked into marrying an older sister (Leah) when he wanted the younger sister (kinda' deserved it); he also married the younger sister (because you could in the Old Testament) and basically loved her more (Rachel); Jacob had to run away from his father-in-law (they make up before his families leaves) and journey to try and reconcile with the aforementioned older brother (Esau). The best part in THIS story is that this is the man God chose to call, "Israel" (as in "the people of Isreal" and the current entire nation of). For some reason, every time I pray, God whispers the similarities of my life experience and Jacob's experience (I mean this in all humility that I identify with the bad choices. I'm not setting up a nation or anything).

At the beginning of the Journey (when he's running from his angry older brother), Jacob sleeps out in the open and has a dream that "there was a ladder set up on the earth, and the top of it reached to heaven; and behold, the angels of God were ascending and descending on it! And behold, the Lord stood above it and said, 'I am the Lord, the God of Abraham your father and the God of Isaac; the land on which you lie I will give to you and to your decendants...Behold, I am with you and will keep you wherever you go..."(Gen 28:12-22).  Now, I'm guessing from his past behavior that Jacob had pretty much been living his life and not really thinking about the God of anybody, so he was understandably freaked out by this dream and takes the rock he was lying on and makes it an altar and promises to make this altar God's house and to give God a 10th of everything he has if God's promises come true (always the negotiator).

Being told that I have a disease that I will probably, eventually die from was similar to a nightmare or a giant dream where I was suddenly confronted with whether or not I truly believe in that ladder (for Christians, Jesus fulfilled the promise of and is the ladder see John1:51)  and I do identify with the fact that this has made heaven and God more important topics in my life when I was genuinely living happily with my fun and busyness. Fun and busyness aren't bad, but I truly believe God wants more from me.

Which leads to the next big event for Jacob - While he's waiting to meet with and reconcile with his big brother, Jacob sends his two wives and 11 children and all that he possesses ahead of him (it doesn't really say why). He is then "left alone; and a man wrestled with him until the breaking of the day" (Gen 32:24). Jacob is doing pretty well in the fight, until the man "touched the hollow of his thigh; and Jacob's thigh was put out of joint." The man says he has to go, but Jacob demands a blessing. The man asks Jacob's name and when Jacob answers, the man says, "Your name shall no more be called Jacob, but Israel, for you have striven with God and men, and have prevailed."

I know it really only matters to me, but I think of this story every time the doctors talk about the mysterious place in my hip that could be cancer or could be healing (still no MRI but I don't know why and don't press it yet).

Because the Church teaches (and most Bible scholars, really...I'm not sure about the Jewish teaching on this story but I will study it) that this is "a symbol of prayer as a battle of faith and as the triumph of perseverance (CCC 2573)" which is "marked by trust in God's faithfulness and by certitude in the victory promised...(CCC2592)." And who is this battle with? Against whom? "Against ourselves and the wiles of the tempter who does all he can to turn away people from prayer, away from union with God. We Pray As We Live, because we live as we pray...the 'spiritual battle'... is inseparable from the battle of prayer. (CCC 2725)

So all week (as my hip has felt better than it has in months), God has been telling me that He's Bigger than I can imagine and that He wants me to see Him and trust Him and believe I'll have the victory because I am constantly wrestling and asking for a blessing. He wants me to pray the way I live and live the way I pray. I was not paying close attention to God before all this; but I know He understands because I am so tiny. He's letting me wrestle because I must battle before I can be more than what I was. I think God wants this from everyone. I think He loves us enough to keep trying to get our attention so we can just let go and trust. And that takes prayer. We have to battle. 

Colorado Fall

I think we are really lucky if we end up living in the place we were always supposed to live. I moved 13 times before I graduated from High School (proud to be a military family, Dad!), so I know a thing or two about longing for a permanent home. Who could have known that that the perfect place for me would be Denver, Colorado? (obviously not Shawn and I since we've lived in 5 cities and 2 countries in our 19 years of marriage). 

I have absolutely never been happier with my "Place" as I am with my sweet little family in Denver, Colorado.   I "coincidentally" read an article at my acupuncturists' office about "forest bathing" - that it is healing people to spend time in nature. I am being healed (thank you, God) and I know one of the reasons I am being healed is spending time in spaces like this: 

Our "big tree" (that's our house)

My daily walking path in my neighborhood. Hallmark should seriously think about filming fall movies here. 

            

And one of the best/worst things about Denver? The amazing fall/autumn season can turn in one day to winter. FYI, I took the fall pics yesterday and these pictures this morning: 

Same street, morning snow. 

Drive to school (ugh, snow traffic and people proving they can still be speed racer in the snow).

But the snow is absolutely beautiful, will burn off in the next two days and has the added bonus of cancelling flag football practice so that our evening is less hectic. Good old fall snow...

Finally, for an update on how I'm doing (seems so narcissistic to me - so thanks for reading). I still have some side-effects this week (the cold is reeking havoc on my fingers) and everything tastes like sand (this ruining of the tongue and taste buds seems like a common chemo problem and I've heard it wears off eventually). This "not wanting to eat" leads to a general nausea that I'm positive is linked to basic hunger (but feels like a bad pregnancy mostly). Shawn was on a work trip for a bit (victory for normalcy!) but now he's home to insist I eat regardless of feelings. Also...my big victory this week is the fact that for the past few days I have totally felt "like myself." I'm active and social and making plans and connections and organizing and cleaning and doing dishes and laundry and yelling at kids about homework and swearing and their terrible love of vulgarity (yeah, young boys!) 

And I'm also proud that I'm back to working out (we have a Peleton Bike and love it). I was able to do a class today and my hip didn't hurt at all! This is a big step since we still don't know if it's cancer or healing in my hip socket. Good to get the oxygen either way. And my close friends will know that it's an insane psychological bonus that I weigh exactly 20 lbs less today than I did on this day last year. Cancer is not a diet plan that I'd recommend...but for some reason, I'm still happy about the weight loss (sorry, Dr. NP).  

Here's me with a shirt that was a gift that says, "Kiss My Grits" which is just totally hilarious to me for some reason.

** I plan to write a second post today because I've had some wonderful spiritual experiences this week, but I wanted to get this basic info out there first. 

Jesus, I still trust in you. 

Loving the weather & can't wait to ski, so Thanks for today. 

Melancholy Monday

Mondays after chemo tend to be melancholy around here. I spent the last four days basically asleep (or at a sporting event or Church for an hour or so and then asleep).  If there is one most difficult thing for me, it is feeling sick or tired or "down." It's entirely against my nature and can completely flatten my spirits. I entered prayer today just looking at my prayer-space and saying, "You must be here, God, because that's when my spiritual director says you are closest to me...when I can't feel anything at all and I have to just trust." So, I watched a beautiful video of Dodie Osteen (look up "Healed of Cancer") where she explains her total healing from cancer (when she was given only 3 weeks to live - she was 48 when diagnosed and is now in her 80's). The video was something I wouldn't normally watch...it's a much more dramatic expression of faith than is my norm. A lot of "Texas" with accents and some drama. A lot of clapping. But I needed to hear it all today. I needed to be reminded that miracles still happen. They happen all of the time.

And, of course, I turned to my friend St. Maria Faustina (her feast day was on Saturday; but I was asleep). And I thought about the fact that this real woman was writing down her real experiences in the 1930's  and that I can read them and ask that my experiences of God be as real.

I read:

622. Jesus gives Himself to the soul in a gentle and sweet manner, and in His depths there is peace. He grants the soul many graces and makes it capable of sharing His eternal thoughts. And frequently, He reveals to it His divine plans.  

626. I felt I was in His hand like a little child, and I heard these words in my soul: Do not fear anything, My daughter; all the adversaries will be shattered at My feet. 

And some happy pictures of my boys this weekend. Living life to the full.


D is home from DC; C with a buddy watching the Rockies; H (#4) playing flag football.

Post chemo #6 and Feast of St Francis of Assisi

Yesterday was a quiet one for me. Spent most of the time talking with Shawn and praying during chemo. I was sent to sit on the other side of the room, so I missed my "man-group" buddies. But, they all stopped by to ask, "what are you doing over here?" as they would leave. I met a few nice friends on the "other side," and I was able to pass out more info on the Fenbendazole (yesterday's crazy supplement) to a lady with stage 4 pancreatic (pancreatic is tough). I don't ever tell other cancer patients about the Fenben because we get a lot of crazy recommendations already, but she asked me what supplements I take, so I went with it.

As I was praying, yesterday, I was asking God to cover my T-cells (the good ones) with the blood of Jesus and picturing that the chemo was rushing through my body washing the bad cancer cells away into my ostomy bag (it's really important to picture the cancer cells leaving or they decide to squat somewhere else and that's bad). I have learned a good deal about visualization (I have brothers who are basketball coaches and use a lot of visualization) and that the body often can't tell the difference between what is "real" and what "we visualize as happening." So, I was visualizing God putting teflon around my good cells (to keep away side effects) and the chemo rushing away with the cancer to this ridiculous bag at my abdomen. The funny visual that came to me through all of this was that Jesus was standing next to me using "Dr Strange" (from the Marvel movie) powers.  Jesus would use his hands to "lift" the spots of cancer out of me and wad them all into a ball and set them into my ostomy bag to be flushed out.

Bottom line is that I feel really good today. Much better than last week already (although Fri & Sat can be good days because of steroid lingering). I had a bit of the arthritis in my forearms and hands, but it's not overwhelming like last week. I'm going with Jesus as Dr Strange on this one.

I wanted to also give a quick shout out to St. Francis of Assisi (whose feast is today). I think we have/had a lot in common (only the first part and the sickness...but I'm trying!):

"No one loved pleasure more than Francis; he had a ready wit, sang merrily, delighted in fine clothes and showy display. Hansdome, gallant, fun and courteous, he soon became a favorite of the young nobles of Assisi...the very king of the frolic. But even at this time Francis showed an instinctive sympathy for the poor." Francis went to war and then struggled with illness, where he seems to have had a conversion of heart. He decided he wanted to be married to "Lady Poverty" and had beautiful visions and messages from God.  He had many amazing things happen, then notably traded clothes with a poor beggar and began preaching love, penance and peace in Assisi and the area around Assisi while begging for simple food, rocks to rebuild churches that were falling apart and for things to give to the poor. He lived in a little hut near Assisi in a town named "Porziuncola" and soon had a number of followers who would go into the town square and give away all of their earthly possession (and get robes of beggar's cloth like Francis). They would then build huts and follow Francis. These followers were eventually called the "Friars Minor" (The littlest Friars)." 

It's all such a beautiful story, it's better to read the long version here: St Francis Story I have loved St Francis for a long time, but mainly after college at the Franciscan University and then when I spent a semester in Europe (Austria) where we took a 10 day trip to Assisi and I was able to see the actual places of his life and St Clare (his cousin who followed him and began an order of sisters in Assisi).

I always feel as though this sickness and the practical sides of it have brought me to such a deeper place, that I can only hope that I can come through the other side (I'm assuming now) and begin to do even more to help others. I don't think I'll lose my love for "fine clothes" or "The frolic" but I would like to find ways to help the poor and desperate and lonely even more.

And maybe after "Dr Strange Jesus" gets rid of this cancer, he'll be able to show me where to start. This blog is just the first thing :)

Healing Bible verse of the day:
Deuteronomy 30:19 "I call heaven and earth to witness against you this day, that I have set before you life and death, blessing and curse; therefore choose life, that you and your descendants may live."

Yeah, I choose life.
Jesus, I trust in you (Dr Strange or classic version)
Salve Regina.

A View in to my supplements

I'm just getting ready for chemo #6 - I feel great this morning and I've already helped C with his homework, ordered groceries on-line for Shawn to pick up and had a text conversation with D (who is on a week-long class trip to Washington DC). Life totally goes on.

It's been a busy week with life, so I have been posting much less. Here's to life, my friends. It's messy and tough sometimes, but it's awesome.

I have wanted to write a post on the supplements and alternative meds I'm taking for a while. I saw a meme that said that "your journey can turn in to someone else's roadmap" and I like knowing what other survivors did, so I will quickly document what I am doing now to help beat this cancer. This is really for research/scientific types:

I'm going to start with the craziest one first. A friend of mine who had her own brush with cancer was researching alternative treatments and came across this blog from a man named Joe Tippens  https://www.mycancerstory.rocks. I would encourage anyone interested (or who knows someone with cancer) to read Joe's blog and do your own research. Shawn and I read this when I was first diagnosed and we spent 3 days researching and then ordering products. Long story short-- Joe was given 3 months to live (terminal lung cancer) and then was connected with a vet product researcher at Merck. The researcher had found that when they de-wormed mice (used for cancer studies ) using this product, injected tumors wouldn't "stick." Joe had nothing to lose and started using it. Within three months, they could find no evidence of disease in Joe's body (NED). He has been totally cancer free for 3 years. Joe put all of his information out there and it's free and accessible to everyone. If you're questioning, you really need to read the blog (click on the link above). There are many people who have documented total cures while taking this product. It's a very long story and detailed, so reach out to me if you'd like to chat about it. The chemical is actually called "Fenbendazole" and it is generic (so no Pharma company will test it as it would be a waste of money for them). There is a sister drug known as "menbendazole" being tested at MD Anderson and other major cancer centers.

I've been taking this dog dewormer for 13 weeks now (so I don't have any worms) but I do believe that it's helping and aiding the chemo with the removal of my cancer. There are no side-effects so it's really a case of "what could it hurt?" My oncologist knows I'm taking it and she's actually excited to see how it might help (she's great).

 

Along with the Fenben, there is a protocol of supplements that I take (Joe's protocol). CBD oil; excellent e (basically all the vitamin e's in one) and curcumin (the chemical in turmeric). There are many anti-cancer properties in each of these. There is a great resource to Joe's protocol on Facebook. If you research his blog above, there is a link to the FB group (it's a closed group so you have to ask to be included).

After diving into the alternative treatments, I read this book:

This book is written by a woman who was also given a terminal diagnosis in her 30's. Because she was a researcher, she began researching why the cancer (that everyone has in their bodies) was somehow being "fed" by her cells. She has found "pathways" of the many types of cancer and gives recommendations as to how to block those pathways. Mainly, this is through diet but also "repurposed drugs" - drugs that are not known as cancer fighters but are patented for other things. She has been cancer free for 20 years. It's a fascinating book and I've included some supplements from her recommendations. This is a pretty technical book at the end. I'm still parsing through a lot of it. Some of the drugs need prescriptions and that will be something I look into after my next scans.

 

These are things I take because of Jane's recommendations: 1) baby aspirin. Did you know that there are extensive studies that taking a daily aspirin can actually prevent cancer? (2) berberine - which has been found to block all cancer pathways and starve them, similar to a recently developed chemo addition known as Avastin (3) grapeseed extract - grapes are one of the most potent cancer-fighters. This is also why a glass of red wine is perfectly healthy (a glass, not a bottle - though it's my preference :) Not sugary blends but high-quality reds are pretty good for you (but so are all natural grape juices & plain grapes, so go with what you prefer)

My oncologist recommended three natural supplements (B 12 not pictured). Lots of
evidence that these help with chemo side effects and energy. Alpha Lipoic is also a blocker (but oncologists can't say that because they can be sued for recommending something that "doesn't work" - also the FDA regulates every single thing they prescribe.) These were recommendations from my doctor and I think help me bounce back well after chemo.

My acupuncturist (I'm totally down with the ancient Chinese medical practices) recommended the above supplements. Evening Primrose to keep the moisture in my body (chemo dries out extremities really quickly). It has totally worked for me. Also, she supplies me with a blend of Chinese herbs that help during chemo &/or radiation. I have the list of what's in it, but unless you can read and understand Chinese, I'm guessing it won't help you - Sally, maybe your mom and help us!!) I also use a Chinese herbal mouthwash to help keep away mouth sores (complimented by daily Lourdes water, of course!)

Last 2 things: the IP- 6 that cleans out dead cells (gotta get them out once they're dead) and a book that is completely diet based.

Take-away tip - EAT A RAINBOW. GET PLANTS ON YOUR PLATE! Diet-wise I am 90%/10% eating a plant-based diet (with occasional - like once a week - wild-caught fish or organic chicken). I eat A LOT of carrots (these are another major cancer fighter) and dark berries (same). Green tea is the #1 cancer-fighting drink, so I always have a glass of this on hand. Pretty good with steamed almond milk. The one thing I cannot seem to quit is cheese. Cheese and a glass of wine are from heaven, I think....so that's my huge splurge. Hoping the dog de-wormer can help with any bad side effects from that.

We are all focused on eating only "Whole Foods"ie: less than 5 ingredients (so not really processed).

I'm a little late right now, so I have to run!
Pray for my chemo today.
I am fighting as hard as I can with my brain, my heart and my soul.
I still think Jesus is doing most of the work.

*post was edited to "clean it up" and add some detail after yesterday's rush.

The Importance of the phrase: "Tumor Lode"

First, I have to say that we have cried a great deal in simple gratitude for the overwhelming outpouring of love from my announcement of my diagnosis. The sheer number of people who are praying and have who expressed concern and support doesn't seem possible to me. Shawn and I have read every message and all I want to do is respond and call and reach out. I promise. But there is a lot coming up next week and being with the boys and spending happy, healthy time with them remains my top priority. Know that I am so grateful and I do plan on using my recuperation moments to reach out. Thank you to everyone....so much.

Truthfully, until Wednesday of last week, I didn't know anything real about cancer. Everyone knows that I deflect with humor. I make jokes to fill spaces. I don't ask the tough questions. I find it easier to make people laugh than to talk through the pain. It might not be my best trait, but I am not sure that I'm called to change it just yet. I have the dearest of friends who do ask the questions - who do go to depths with others. And I love you all for it. But, whenever it came to cancer and the realities of living with cancer, I was not your girl who was going to "find out all she could" about ailments...

So, I usually defaulted to the idea that "cancer means you're basically going to die sooner rather than later after losing a ton of weight and all of your hair." Someone would say they had cancer and I was looking for the immediate head scarf, soft voice and total lack of appetite.

Shawn told me that a lot of people share this view and that I should maybe explain where I'm at in the diagnosis and demonstrate that my situation can be seen as pretty hopeful, relatively.

It all hinges on the phrase "tumor lode" or "tumor burden." While it is true that the docs are labeling my cancer as stage 4, this is because it has most likely spread to my lungs and liver. This is still undetermined. Undetermined, because the spots are all too small (and too few) to diagnose. It is in my best treatment options to be classified as Stage 4 because this will allow them to prescribe the most potent dose of Chemotherapy. As a comparison, a person with large tumors in multiple areas spread throughout his or her body would also be categorized as Stage 4. This person would have a much greater "tumor lode or burden" than myself.  It is hopeful news for myself that, "my tumor burden appears to be very small," which brought us a lot of comfort yesterday.

About yesterday and what's up next:  Tuesday (6/25), I will have a colostomy surgery (click if you're interested). It's laparoscopic, will be generally life-changing, but is widely done and relatively safe. I will also have a port put in under my collar bone for my future chemo infusions. I will hopefully meet with my oncologist (chemo/cancer doc described as my "quarterback") and I will have a PET scan which will hopefully allow my docs to fully diagnose the spot in my liver and/or lungs. I will be in the hospital until Thursday and will need to recover for 2 or 3 weeks before I can begin my chemo. I'm planning to use those weeks for connection, praying my heart out and fun (and let's be serious, I'll still have to do a lot of laundry, swim team and baseball :) If you're local (or crazy) and want to come visit in the hospital, email us and we'll let you know where I am (Safety first!) 

Today, because PRAISE GOD, life goes on, we are heading to Shawn's parents home because they are having a giant family party to celebrate 50 years of marriage. So grateful, so happy, so excited to celebrate something so wonderful. And Shawn and I will be planning ours as well (or at least our 40th in 21 years) because (Romans 5:1-5) "Hope does not disappoint"

Blessings on your weekend. Happy Feast of Corpus Christi tomorrow. B

How we spent 7am - 11am this morning, at a rainy, crazy swim meet!

"You have a mass..." Cancer Begins

First, I apologize that for many people, this impersonal, public blog will be the only way I can effectively communicate this sudden journey with my unexpected cancer. I am blessed to have so many people to tell while sad that I don't have any time to speak personally with everyone. Know that I am eternally grateful that you care. I can feel those of you praying and I will try and answer emails and comments when I can.

The beginning of my story (keeping it "short and sweet" for Liz ;). This may be gross or graphic for some (warning, it is rectal cancer and it will not be pretty. Thank you, Jesus, for this humility) -

Around September of 2018, I starting having blood in my stools. It's gross and embarrassing so I only discussed it with a few people. I was still working out, eating well and felt great, so I thought it was early menopause. I went to see my GP doctor in November and she diagnosed hemorrhoids. I went to see a hemorrhoid doctor, and he treated them and I thought all was well. In December, I began feeling very constipated (see? still gross) and this wasn't ever a problem I'd had before, so I ignored it and decided to change my diet a bit.  In January, I did the diet Whole30, which is basically just eating meat and vegetables for 30 days. No dairy, sugar or anything processed. I felt a bit better and got rid of the more "gassy" symptoms I'd also been experiencing. I still didn't feel 100%, but my overall health was good. In February, I started eating regularly and the pain returned. By March, I was pretty sure something was really wrong with my tail end. I went back to my GP (my main doctor) and she ran blood tests. They were fine (except I'm about 20 lbs overweight, which actually directed us away from cancer as "significant weight loss" is usually an early sign. Hooray for fat!! ha.ha.). I also returned to the hemorrhoid doctor and he gave me a second treatment. Because I had never had hemorrhoids (even pregnant), I had no idea that the extreme pain I was experiencing was not just a symptom of those little buggers.

My third trip to the hemorrhoid doc was the first week of June 2019 and I finally said, "I never feel ok. I can barely stand after 5:00pm." He was surprised by this and gave a more significant (ouch!) exam. And, he found a mass in my rectum.

The next day, I saw a colon specialist (yeah, Dr. N!) and he took about 5 minutes to examine me. He knew right away and sat Shawn and I down and said, "There is no easy way to tell you both, but this is definitely cancer. You have a tumor and we will need to run some tests to see if it has spread."

I have spent the last week having those tests.  Specifically, a CT scan and my first colonoscopy (really the best way to diagnose colorectal cancer and not recommended until 50 - I'm 49). The results are a strange limbo where I have a tiny (1cm) spot in the middle of my liver and "numerous" tiny (2mm-7mm) spots on my lungs. None of these can be biopsied. I will have an MRI to diagnose the liver spot (they suspect it is a blood clot and not cancer) and my doctors are now in big discussions about how to diagnose the lung "nodules" as they can be cancer or nothing, and that will make a big difference for my prognosis.

Regardless, they must treat my cancer as Stage 4 until proven otherwise and we have a meeting with my doctor(s) today to finalize a treatment plan. The rough outline is that I will have a major colon surgery next week (an iliostomy - please look it up if interested) and begin chemotherapy a week or two later.

I will not philosophize in this post because it's intended to be "just the facts, ma'am." But we are in good spirits overall. I believe, trust, hope in and love God and will continue to believe whether it's inconvenient or people think I'm crazy. I would ask that you reach out through email or through Shawn. I do not process well discussing things too much (I'm sorry) and I still have 3 young boys to raise and rejoice in. And baseball and swim team are full time jobs. Lastly, the only time I breakdown is experiencing the overwhelming kindness that is already being lavished on us.

I will commit to updating anytime there is news (because I know you worry) and I will update this afternoon as we meet with the doctors at 3:00 to confirm the plan of treatment.

If you are a person of prayer (and are ok with asking people in heaven to pray for me), please ask for the intercession of Bl. Pier Giorgio Frassati, Bl Julia Greely and Bridgette Kelly Sullivan. I'll try to update about that in the coming weeks.

Thanks for reading. Talk later. Bridge