Real Life gets in the way

I know I've been slow to post. I'm thinking most readers don't care too much, but I do feel badly for my mom (who checks daily). I'm back, Mom!! :)

When there is a long space between posts, it's always because real life has gotten in the way. It's been so wonderful to grocery shop, drop off at school, make dinner every night, struggle through homework and sit through practices. I am struggling a bit with the fact that I can't feel my fingertips (practice typing while you're young, kids!); but it's a true miracle that I've been enjoying folding and schlepping laundry through my house.

Update: In exciting news, I was able to see my GI specialist - the doctor who first diagnosed my tumor - and he preformed another exam of my rectum (will never NOT be embarassing). The doctor saw no signs of a tumor. All he saw was scar tissue, so the tumor is totally gone. This led the doctor to say that his "preference is no surgery on my colon or rectum." I can't explain what an answer to prayer this is. There can be a number of issues with rectal surgery...the worst of which is that my sphinctur just wouldn't work anymore and the ostomy bag could become permanent. While the doctor didn't think this would be an issue, I would still prefer to have all of my organs working and intact in my body.

So, when the doctor said that it is a very real possibility that I might have only a surgery to reverse the bag, I definitely cried with joy. I will have a colonoscopy/biopsy Feb 14 (happy Valentine's Day!) to confirm that even the hidden cancer cells are gone, and then I will know for certain if I can move on to only have the bag-reversal surgery.  We are tentatively very excited.

The next update is that I have begun the full protocol of repurposed drugs ordered by Dr. Cantrell. This includes Mon, Wed, and Friday injections of Interferon  (definitely click if interested - but suffice it to say that these are the naturally occurring autoimmune proteins all of our bodies make). I have been warned that the first two weeks are the most difficult, as I experience flu-like symptoms for about 12 hours after each injection. I was a wreck on Thurs (until about 11am) after a night of what felt like a "12 hour flu", but I fully believe it will get better. Dr Cantrell says that he believes that the symptoms are signs that the cancer is being attacked and dying (the way every fever acts in our bodies when fighting off illness).

I am entering the period where every decision is more of an informed guess. I keep thinking of it as the "walking on water" period. We are as informed as we can be (Shawn and I) and are making decisions based on the experience of others and my own "best life" choices. Fear is a liar, so I am not afraid. I am hopeful and waiting...and sometimes "Feverish" like the best of Jane Austen's heroines.

What's next? the biopsy 2/14...most likely another scan of some kind to see how it's all working...I visit Nashville again the last week in February...and we will decide on what surgery will be first. I have weekly blood-draws to monitor my basic health and how all of these new medicines are effecting me. I will also do 100's of dishes and piles of laundry (so you know that the glamour has not left my life). And - of course - I turn 50 on Feb. 11.

Through all of this, I struggle with my personality that is very "Go! Go! Go" while my body demands rest and patience. I am grateful that today is the feast of St Francis de Sales, the patron of writers and journalists. He wrote a beautiful devotional called "Introduction to the Devout Life." I have been focusing on his words that:

"...the practice of devotion must be adopted to the strength, to the occupation and to the duties of each one in particular...if it ever works against...anyone's legitimate station and calling, then it is very definitely false devotion...in whatever situation we happen to be, we can and must aspire to the life of perfection..."

So I rest in the fact that I'm doing my best. And that sometimes it's best to do less. Seems to be working so far. Thank you, God.

On this day of the National March for Life, we rejoice in the choice of our sweet boy's birth mom who is brave and selfless and gave us the most perfect gift of C. What would life be like without you? I'm glad we will never need to know.

It's the Little Things. Even with Cancer.

This morning, I was thinking about how there seems to be such a focus on "changing the world" and "doing something big" in the lives of many people. This was probably on my mind because our oldest is shadowing at another High School and the talk of "where he will go" next year comes up regularly with friends and friends' parents and the general public. How will he "do something big" if he goes to the wrong school? (she says ironically).

Then, after dropping him off at the school, I headed to my weekly "blood draw" at my cancer center (which happens to be in a hospital -- some are not). Most hospitals seem to be in a constant state of renovation and this one is no different. Renovation = terrible parking and crowded parking structures.
As I was driving around in a parking structure too small for my Suburban (ugh), another truck reached the top of the structure and had to turn around because there were no spaces. I pulled in to a handicapped spot and waited my turn to turn around after him. As the truck passed me, the driver shrugged is shoulders and basically made the motion of "no luck." I smiled and waved.

There is something about cancer and chronic illness in general that seems to band fellow sufferers together. I know that it is a shared experience. I know that a heart can grow many sizes larger and becomes especially more sensitive to other people suffering.

I think it's because there becomes a sharp focus on the small things.

Things like the fact that not finding a close parking space doesn't matter. Things like the weather being awful but still being able to walk around and feel it.

A friends' baby "talked" all through Mass this morning. It wasn't quiet or reflective. It was beautiful.

I had to run to the grocery store for the third time in three days because we're out of coffee filters and I need efferdent denture cleanser because my new "retainer wearing" child gags on the taste of his retainer every time he lays down to sleep. After months of not having the energy to run errands, I was so happy to wander through a grocery store looking for random things.

I'm happy to stand around at the schools I have barely seen these past 7 months.

I'm excited to talk to school secretaries and teachers who don't know my name (which has been hard and weird for me).

Shawn was out of town for the night, and I was proud that the boys were all asleep in bed by 9pm (which never happens).

When I finally found a parking space on the street and got to the cancer center, it was funny to laugh at myself when they told me I have a note on my chart that "she's always 10 min late." I was 5 minutes early and the front office clapped for me.

My heart broke a little for one of the men I know from chemo who was there for his infusion. He had such a lost, broken look on his face and none of the other regulars were there. I could only mouth the word, "Hi" and he tried to smile. It's little, but I'll think about my "acquaintance -friend" all day now.

But the nurses were there and squealed when they saw me. They said, "You left without your present after your last chemo!" They had this for me:

All of the nurses and office staff signed it.  And I was able to return $6000 worth of chemo-pump apparatus: 

And they told me to "throw away the bag that held all that stuff" (the pouch I would wear) "you won't need it."

None of these things will effect your day today, but there will be a thousand small moments I will cherish throughout the day. It changes my world and I truly believe it's only these small things that matter.

Chemo #12 - DOWN.

It's been six days since my 12th chemo. We are really hoping this is my final full-IV chemo...the chemo where I sat for nearly 5 hours as the drugs were pumped into my veins and then I wore a mini-pump around for 48 more hours. If I never experience that reality again, it will be more than fine by me.

I was pretty physically drained this last infusion. I had mixed reactions each treatment - sometimes I would have fairly good energy and sometimes I would feel very drained. This last treatment I simply could not wake up. I slept almost 3 days straight and felt terrible the entire time.  It was probably fitting that this last infusion seemed to be my worst one. Guaranteed that I'll never "hanker back" to the "good old days of chemo" (I felt a shudder even writing this. You can't take anything for granted with cancer). The good news is that I have decided to be "over it" and I'm just going on with our lives...I am so sick of talking about my cancer.

What's next?

I have been on my new protocol of repurposed drugs and I see Dr Cantrell in Tennessee at the end of February. So far, I feel great and have no pains or issues anywhere.

I have an appointment with my GI doctor (my colon specialist) this week because a week can't go by without something medically embarrassing happening in my life. This will be my first physical exam to triple check that the cancer in my rectum is truly gone (as the scan said). It involves enemas (for an organ that is not currently working, but oh well...) and possibly some tough discussions/decisions regarding surgery on my "lower colon" (ie: my rectum).

Here is where I insert the well-known joke: "rectum? Damn near killed him!"

Suffice it to say that I do not want surgery because the potential side-effects are life-changing; but this is the standard practice when it comes to cancer.

Possibly my favorite news is that my bag can definitely be reversed (but will be effected by the rectal surgery timing). I honestly don't care if it has to be put off until June, if I can have a future without a bag of poop hanging off my stomach, I will consider everything a win.

And on the "future treatment" timeline, the standard of oncology is that I will continue some type of chemo (pill or pump form) indefinitely (no one has ever said how long I'd be "on it"). If you have read any of this blog, you'll know I am committed to using the repurposed drugs INSTEAD of any type of chemo. Obviously, these next few months will tell us a lot about how my future will go.

Spoiler - "I believe that I shall see the goodness of the Lord in the land of living" (Ps 27:13) and that land involves hair and energy and bathing suits...

"...on earth as it is in heaven..."

I am not a person who goes into detail about my prayer life. It seems strange, but I'm actually not a person who discusses intimate details of my life much at all. I am a funny person, a casual person and a person who likes to talk and laugh; but I have always had a very guarded relationship with my heart and how I share it.

That all seems strange considering I have this blog where a lot of personal information is shared. And I've mentioned it before, but it is because I feel like God asked me to share it. It's always hard for me to write about the deeper parts of myself. I think maybe that's why I have rectal cancer, because butt-jokes come easy when you are raised in a house filled with boys and are now running your own house filled with boys.

But all of this does not mean I don't worry. That I don't struggle falling asleep at night with all that is running through my mind. Ironically, I don't worry too much about cancer and/or dying right now. I worry more about our boys - about friends and homework and how (when angry) they default to saying, "I hate you" to both each other and to Shawn and I. I worry about the piles of laundry and a freezer filled with mystery food that would break my heart to throw away. I worry about friends and family and the troubles they've shared. I worry about my baby God-daughter who needs open heart surgery soon. I worry about friends whose kids are struggling with both physical health and mental illness.  I worry about the Australian fires and about Iran and what is happening in our world...just because I have cancer doesn't mean everything else has stopped.

A spiritual friend and prayer-warrior who has been helping me throughout this "battle" with cancer is a man named Deacon Brian Kerby. And he inspired a way to pray that has really brought me peace during all of this, so I wanted to describe it here - in case it can help someone else. Again, a big caveat that I am not pretending to be some guru. This is just my experience and I wanted to share it since I have been having big talks with some people about worry and fear and their trying to Trust in so much chaos.

This is what I do:

I sit (or kneel - I actually have a little stool that allows me to kneel but rest my rear on the stool at the same time).

I close my eyes and just be really quiet for about 2 minutes (if you have kids it helps to hide when you do this or they'll find you. Also, if you have a loud house/family, wearing noise-cancelling head phones is awesome). If total silence is too much, instrumental music is good too.

I picture (in my mind) Jesus on the Cross. This part can be hard if you aren't used to picturing Jesus Crucified. The first time I did this, I felt very sad and found it hard to picture anything but Jesus' feet because the blood bugged me. Don't worry. Just go with your imagination.

I take each worry I have (I actually picture each family member) and I place the worry/person into a wound on Jesus' body. For reference of the wounds - His head (the Crown of Thorns); His hands and feet; and His side where the soldier pierced Jesus' heart with his spear/lance. Here's an important point - Jesus died to take all of that suffering - He's already done it so you're not doing anything mean. Jesus wants and died to take your worry and suffering into Himself because He loves you. He has always loved you. He doesn't want you to hold on to that worry or person with a death grip. The Bible says, "It has been accomplished." Your holding on to people or suffering actually blocks your freedom (and possibly the freedom of the situation).  You let it go to let Jesus take care of it (a note that I do this almost every day, so it's not like you can't repeat the process).

THEN (yes, there is a step after that tough one), picture yourself walking past the Cross into the freedom of the Resurrection. "On earth as it is in heaven" means we shouldn't stop at the Cross - at the worry and suffering - it means that (since Jesus has already taken on all of that pain) - that He wants us to experience the spiritual power of AFTER - the Resurrection power. This step is where you sit in quiet and wait for God. God speaks in silence. If you think about it, all of the most amazing things in the world happen in total silence (shout out to the book the Power of Silence by Cardinal R. Sarah): The growth of trees, the conception of a baby, snow, rain, cell regeneration, whales swimming, the depth of the ocean, the movement of the planets, falling in love...I almost always end up picturing the meadows where we ride our 4-wheelers near the cabin. They are immense and quiet and I feel peaceful here. Lately, I've started to picture the ocean. These quiet moments are where I feel the Resurrection power of Christ. Everything is handled. Everything will be worked to the good. This is the place that I have come to peace that my eventual death will be ok...(whether sooner or later).

It's not magic, it's resting in what has already happened.

I know some people who have started to do this and it can really help calm anxiety and loneliness. I know that it can completely change the outlook of my day.

Chemo#12 tomorrow. I pray that it will be the last one.
As always, Jesus, I trust in you.

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!) 

A Christmas and New Year's break 2019

I am quickly checking in during the holiday craziness to say that I have not stopped blogging...just living life right now - and it's been wonderful.

Also, I feel really well and I've even been skiing!

Can't believe that the 2010's are over. It still seems like 1980 was a few years ago.

Here's what we've been doing over these 11 days:

 Happy Christmas Day 

 skiing with cousins and my boys in the Colorado mountains. 

 ugly sweater Christmas with our almost 11 year old!! 

 Early "almost Christmas" with cousins from Portland!! 

 "ugly sweater day" at school

 "early Christmas" with Grandma D and Grandpa J.

 Hot chocolate break during the ski trip

 "The Night Before Christmas" with Aunty MA and Uncle S! 

 Grandma and Grandpa eating a feast provided by Sonia M (the best)

Christmas morning in my new favorite head-gear

 Sistas for life

Our kids (and cousins) ruining the glass at a restaurant after we saw the new Star Wars movie. 

Just a few snippets of our holidays. Off to the cabin today to see some Grady family!! (We've missed you!) 

From December 31 last year (2018)- (I have a prayer journal from every year and read the old one to see what was up): 

"The one desire which should move us should be, first of all, that of seeing him face to face who is now hid from us..." and "...why should we rest in the world, when it is the token and promise of another?" (Bible in a Year, pg 134). 

Incredible, that I would live these statements in a real way just months later. 2019 I have tasted real mortality. I have been challenged to accept that I will be leaving the earth sooner than I expected (even if it's 30 years from now) and practice silence so that I can meet the "unknown God" in a real way. So that I can know and trust in Him and experience His love. 

Happy 2020. I'm praying for you to find joy this year. For you to be safe and secure. For your family to be whole. For all of us to "be not afraid." 

PET #3 scan results & Chemo #11 +1

Short one today since it's chemo day +1 and I'm a bit tired...but I've gotten a few messages and know it's time. Thanks for praying and waiting. 

Side note that Nashville visit and doctor were amazing and exactly what I was hoping...but that will get i's own post ASAP. 

Dr Cantrell (in Nashville) was the first of all of my doctors to tell me that I actually have "a very aggressive form of colon cancer". The cells are "non differentiated" which means that they are mutating quickly enough to not be easily diagnosed as colon cancer anymore.  I realize now that this was why I've had a few doctors speak to me as if my death was imminent. I guess from a practical stand-point, they were justified in their negativity. It might seem weird, but I'm really grateful that Dr NP (my oncologist here) has always said that my cancer is "serious" but "people's bodies are different and you can't know how they'll react until they do or don't." She (Dr NP) has always been positive - I knew God brought us to her and I have the scans to prove it. 

So, Dr. Cantrell was going over my results with us while we were in Nashville and Dr. NP went over them with us before chemo yesterday...so these scans are well covered. 

First, my colon is appearing like a totally normal colon. This means that my rectal tumor seems completely gone. There was no activity there and no activity in the lymph node near it. Both doctors said to assume there are micro cancer cells remaining (but just to be clear, I have resigned myself to knowing that I will have micro cancer cells remaining for the rest of my life, which is where Dr. Cantrell comes in - more on that tomorrow). But, the amazing news is that my rectal tumor and cancer activity there are gone. Your prayers have power. 

Next, my liver remains completely clear. Cancer still gone. 

I have one chest lymph node that lit up on the scan but both the radiologists and my two doctors think that this is inflammation, not cancer. They think I might have a little chest cold/winter issues because it didn't react the same as cancer. We'll watch it but Dr. NP was like, "I don't think it's cancer" (and this is her specialty). 

The 3 hip mets (tumors) are still there, but have significantly shrunk. Their slow change was explained as "blood flow - so chemo flow- is slow to bones. It's working, but more slowly." Dr NP is adding a bone med to my next (and hopefully final) chemo (#12) which she said has shown promise with both bone strengthening as well as attacking cancer in the bones. I am totally peaceful that it's all going the way it should. That silly hip (with my spiritual thoughts on it) does not surprise me. 

So plans going forward? Best news is that I will take a "chemo break" for sure after #12 (on Jan. 9, 2020). At least a month off of chemo. I will meet with my GI doctor who will run the tests to confirm the positive news about my rectal tumor. Specific prayers are begged that he finds nothing - nada - zip and will let me move forward without any removal of my rectum. I'll talk more about that all later. My goal is that I will have one surgery that will reverse my bag and I'll be back to using my rear for what it's intended (twerking and being patted by my children, obviously). 

These upcoming months (Jan - March) will be BIG in all of this. A quick background that Dr Cantrell is the doctor who has been using repurposed FDA approved drugs to cure his cancer and continue his own life for 19 1/2 years. Dr NP has already committed to continuing my blood work and scans here with her practice regardless of what we choose. As a Standard Care Oncologist, she will be recommending life-long chemo in some sort (we discussed it yesterday), and I will remain open to God's will in all of this (He's been good with making things clear for cloudy-brain me). 

All I know is that GOD IS SO GOOD TO ME. Today's Gospel (read at all Catholic Masses throughout the world today) is the one where Mary tells the angel, "Behold, I am the Handmaid of the Lord, let it be done to me according to your word." I always picture Mary just looking at the angel and basically letting go of control (and she was a well-raised Jewish girl, so control is in her DNA). She was young, unmarried and God was giving her this baby...and she was like, "What?...OK..." Cancer is nowhere near as awesome as a baby, but the subtext is the same. When I first got my diagnosis, I knew God had a reason He allowed it to happen (not caused it - that's the stupid devil who hates us). I told God I'd do what He wanted and believe this was not about my imminent death (because I really didn't think it was or is). I never knew until this week that my cancer was aggressive. That those doctors were really serious when they told me to "get my kids into counseling." They were even probably right in a world-based way. I just keep saying "...ok..." and following my gut and prayer. God led me to Dr NP (who is amazing and open and frazzled b/c she cares) and then Dr Cantrell and maybe my helping to find a new way to fight cancer (a way cheaper- very-low-side-effects way, FYI)

In a nutshell ("look, it's me in a nut shell!") I had amazing scans, an outstanding reaction to chemo over the last 8 weeks and a hopeful visit to Nashville. 

Your prayers are working. They are creating miracles for me and my little family. I am overwhelmed by love and generosity...it's a seriously powerful Christmas time here in Denver. 

Lastly, please pray for 2 babies who are very important to me...my precious God Daugher, Charlotte (17 months) will need to have a second open heart surgery to repair a valve that has given out. 

Me and Char...

Secondly, a wonderful young missionary couple we sponsor had a miraculous (this deserves its own post) adoption happen this last week. Their little baby, Xavier, also needed open heart surgery which Xavier came though safely but he will be in recovery for the next 3 weeks. Please pray for Xavier and his mommy and daddy (I'll need to check with them about posting anything more). 

It's a wonderful work-up to Christmas here. Now to wrap presents until I pass out (literally) and hope these side-effects keep at bay. 

In the Bleak Midwinter Christina Rossetti (written Jan 1872)

A favorite poem of mine is also a classic English Christmas carol. So perfect and quiet right about now.  (No results yet...but waiting is good)

In the bleak midwinter

BY CHRISTINA ROSSETTI

In the bleak midwinter, frosty wind made moan,

Earth stood hard as iron, water like a stone;

Snow had fallen, snow on snow, snow on snow,

In the bleak midwinter, long ago.

Our God, Heaven cannot hold Him, nor earth sustain;

Heaven and earth shall flee away when He comes to reign.

In the bleak midwinter a stable place sufficed

The Lord God Almighty, Jesus Christ.

Enough for Him, whom cherubim, worship night and day,

Breastful of milk, and a mangerful of hay;

Enough for Him, whom angels fall before,

The ox and ass and camel which adore.

Angels and archangels may have gathered there,

Cherubim and seraphim thronged the air;

But His mother only, in her maiden bliss,

Worshipped the beloved with a kiss.

What can I give Him, poor as I am?

If I were a shepherd, I would bring a lamb;

If I were a Wise Man, I would do my part;

Yet what I can I give Him: give my heart.

PET Scan #3 (no results yet) & our plans to see a specialist in Tennessee

11 days until Christmas and it's been non-stop around here!

First, Shawn worked his sharp-focused magic and got the lines untangled so that I was finally able to get that third PET scan yesterday!! We should get some results by tomorrow (definitely Monday) which is perfect timing because I have an appointment with the re-purposed drug specialist in Nashville on Monday and Tuesday.

Just to recap, Repurposed drugs are standard medicines that are already used to treat different health concerns than cancer. Example: I am currently taking 600mg of Tagamet (cimetidine) a day. Tagamet is used to treat serious heart burn and it's over-the-counter.

The specialist I'm seeing has also discovered a lot of research that this drug blocks cancer from spreading (metastases).  He has been doing serious research and working with patients for many years who are using repurposed drugs to keep cancer from growing or spreading even in Stage IV and aggressive cancers. Shawn asked our "favorite cancer doctor question" of "how many of your patients are still alive and for how long?" and this doctor has a number of patients who have lived for over 10 or 20 years using these repurposed drugs and treating cancer as a chronic disease similar to diabetes or HIV. This was very exciting to us considering that my only other major option seems to be life-long chemo, which is not my first (or 100th) choice. And my one goal is keeping cancer away or controlled for the rest of my life. 

At this point most people ask, "Why have we never heard about these other drugs?" And the only answers I can come up with are that (1) it's amazing what you learn when your life depends on it, and (2) follow the money. These drugs are far cheaper than the $48,000 that my current chemo is costing our insurance. I am not cynical by nature but there is not a lot of money in treating cancer with repurposed drugs. I will understand a lot more practical things after we go see the doctor next week, which is also why I'm not posting his name or info yet. We're pretty confident I will work with him, but need to see and speak to him first-hand to know we're sure. 

So, Shawn and I are off to Nashville, TN from Mon-Wed. I will try and blog from there because I think this is all so interesting and you might be interested in the alternative cancer treatment as well. I've never been to Nashville, so I'm also excited to have 3 days alone with Shawn in such a fun city. 

As far as the rest of our lives, my parents are here to help and visit before Christmas (yeah! family) and Shawn had his colonoscopy and will be writing a guest blog/PSA about it soon. We are participating in the "adopt a family" program where you give another family their Christmas (presents and groceries) and everything is due today. We hosted an amazing "Date Night with Fr Nate (Nathan)" with our dear priest friend and a good amount of couple-friends and it was a fun "cocktail and encouragement" evening (Whew)! It has been figuratively "raining and pouring" with events and God's grace. A true miracle is that I feel better than I felt a year ago at this time (chemo side-effects excepted). I have energy to stay up past 9:00pm - even until 1am one night!  (which is new this December) and I am busy making plans for what 2020 will look like for us. I literally don't have time for cancer anymore, so I'm excited to see if this doctor can help me get back to my new "girl on a mission" life. I trust Jesus has healed me and I'm just waiting to see the results of that trust. I know "hope does not disappoint" (Romans 5:5)...but, sadly, hope still doesn't wrap Christmas gifts, go to chemo for me or make Christmas dinner, so I'm as busy as you for the next 11 days ;)

More tomorrow! 

Our Lady of Guadalupe

Today is a very important Catholic Feast Day for the Americas (All the way from Alaska, through Northern Canada and down to the Águila Islet of the Diego Ramirez Islands - which are Islands below South America - That is because today is the Feast day of Our Lady of the Americas aka: 
Our Lady of Guadalupe. 

Now, your idea of Our Lady of Guadalupe may look something like this: 

...basically, pretty pictures of a lady plastered all over the size of someone's truck or van (most likely someone of Hispanic origin). Maybe you've never thought about these pictures before...but they are important enough to learn a little bit. 

First, a tiny bit of background (from the blog get fed - click on the name to get more details): 

The Blessed Virgin Mary appeared to St. Juan Diego in the 16th century in present day Mexico City, Mexico. Juan Diego saw an apparition of the Blessed Virgin on the Hill of Tepeyac on December 9, 1531, which happened to be the feast day of the Immaculate Conception in that time. Our Lady requested that a church be built on that site, which Juan Diego dutifully relayed to the bishop.

After a request by the bishop to prove her identity, Our Lady asked Juan Diego to gather roses that were growing on the hill (which were neither native to the area nor in season) and take them to the bishop. Juan Diego obeyed and placed the roses in his tilma (or cloak) to carry back to the bishop as evidence of Our Lady's appearance.

Upon opening the tilma to reveal the miraculous roses to the bishop, there was something even more miraculous present in the tilma—a striking image of the Blessed Virgin Mary. 

In the image Our Lady wears the traditional garments of an Aztec princess.  A black sash around her waist was a cultural tradition among the Aztec women that indicated pregnancy.  All the elements of the image point to Our Lady as being above the gods the Aztecs worshiped, while at the same time showing that she herself was submissive to the true Creator God while being pregnant with the Divine God-man that grew in her womb.

By using only cultural symbols and no words, which the Aztec people could read as a codex, the miraculous image on the tilma spoke the truth of the Christian faith that the Spanish Catholic missionaries proclaimed. A mass conversion of millions upon millions of Aztecs to the Catholic faith soon followed—ending the human sacrifices, especially child sacrifices, that they practiced...

The Tilma (what Juan Diego was wearing) is still available for viewing at the Cathedral in Mexico City even 500+ years later. It has been studied many times (by non-Catholic scientists) and the image has proven to be almost like a nuclear blast that was projected onto the fabric. Shawn, D and I were able to visit the Cathedral & image right after learning we would adopt C.  We have always believed that Mary's prayers to Jesus were answered for us with our second son.

Here is the actual image and the explanations of what each symbol means:

Almost wants to make me put the supernatural image on my car. I might just go do that.

Chemo #10 +5 & some Luke healing verses

Contrary to my past post (bummer), I had a lot of energy for the day after chemo but was sidelined with fatigue as Saturday and Sunday moved in. I have that pump of 5FU that I wear until Saturday afternoon and - somehow - after Shawn disconnects it, I have waves of fatigue and just need to sit and sleep. I saw a number of people at church as we made a quick retreat toward the door - so I apologize if we ran out. I needed to sleep (and was very hot in my winter hat that I wore during Mass).

But it's Tuesday and so I've bounced back (as much as I'll bounce with the side-effects of super cold sensitivity).

Our family has still been reading a chapter of the book of Luke every night (full disclosure that we doubled up one weekend night because we all needed sleep). I have been completely struck by the amount of healing Jesus did. Seriously, if Jesus isn't telling everyone to love one another and work to demonstrate love (charity), He's basically healing people. It's somewhat of His identity in Luke (side note that Luke was a doctor, so he probably focused on the healing because it was so incredible to him personally). And these healings are not the often "poo-pooed" miracles that "modern medicine can heal now" (like that mattered to the people who were healed)...these are some "raising people from the dead" and "curing everyone in one fell swoop" whoppers.

All of this detail matters when you have cancer. Because I know that Jesus is the same "yesterday, today and forever"- so these healings from the ancient past I claim as my present and future.

Here's a list FYI:

Luke 4:38-39 - Jesus heals Simon's mother in law of a fever

Luke 5: 12-16 & 17-26 - heals a leper; heals someone paralyzed

Luke 6: 6 & 17-19 - heals a man's withered hand; "...power came forth from Him and healed them all"

Luke 7: 1-10 & 11-17 - heals the centurion's slave (from far away b/c the centurion said "only say the word and he shall be healed"...familiar?); and raises a widow's son from the dead.

Luke 8: 26-39 - heals someone possessed by a demon (sends them into pigs)

Luke 9: 37-43 - heals a boy possessed

We're only on book 10 today...and so I plan to read about healings until Christmas. And I will continue to be amazed by things I just skimmed over before. And the truth is that whatever you need to be healed from, Jesus wants to do that too. You don't need to have cancer, obviously.  Jesus only wants us to have faith and trust (no pixie dust required, Tinkerbell).

Once again, I'm back to St Faustina's diary: 822. ... my part is to love Him to folly...

Trust and "loving to folly" that's my current cancer plan. And we're going to keep reading Luke, of course.

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...)