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!)