PET scan #4 today (no results yet!)

I had another PET scan today. It went well (the same as always). I should get some results tomorrow- but most likely on Monday. I'm not worried. It will be nice to see if the repurposed drugs have been working (working would be shrinking of mets in my hip or no change). I am totally ok if I have "a little cancer" for the rest of my life - as long as it doesn't grow. 

Now that I've gotten the scan, Shawn and I will go to Nashville to see Dr Cantrell again (next Friday). Although I'm not sure what would change, it will be nice to see Dr. C again. 

After that, I have scheduled my "bag-be-gone" surgery for March 10th!! 13 days. It's looking to be quite the busy few weeks around here. According to Dr N (my GI specialist), I should be in the hospital for a few days and then home with staples in my side but no bag (yeah!). 

Lastly, I DID hear from the Order of Malta and they have chosen Shawn and I to go to Lourdes! I will have more details soon but it looks like we will head to France at the end of April. I am so focused on the bag-removal surgery, that the emotions around the trip will most likely come spilling out March 12 and onward. I cried when I was accepted. And I trust that Mary is asking Jesus to take away the spots of cancer in my hip. I even pictured entering the water and having the spots washed away (while I was sliding into the PET scan machine). 

There was a lot of info in this post. 

I will post more tomorrow. 

Memento Mori

I'm guessing most people know that today is Ash Wednesday (if only because of a co-worker with "dirt" on his or her head). I won't go into the whole big background on Lent except to say that this is the 40 (plus a few) days that Catholics spend time thinking about our own death and what that means.

I have had a lot of practice in this lately.

And I have to admit that there has been a huge blessing in facing death...it was the gift of getting to the place where I am not afraid to die.

Ten months ago, I couldn't have written that sentence. I don't even think I could have framed the words. I have gone on many silent retreats and one of the talks is always about facing our own death (so I had thought about it before I was ever diagnosed with cancer). After every "death talk," I would enter into a period of quiet reflection and I always came to the same conclusion: I do not want to leave my kids. They will not be ok. I am the one who loves them the best and they will suffer too much if I die, so I refuse. I would look God in the eye (I'm tempted to write "figuratively" - but in my heart - I was really looking at Him) and decide to clutch on to my husband and children.

About 5 months ago, sitting through days of chemotherapy and the subsequent sickness/separation that followed, I watched as my boys rallied and lived and took care of their lives. Even though they are only 14, 11 and 8, my boys found the help they needed and laughed with their dad and with other people about jokes I hadn't heard. Teachers and school staff made sure my boys stayed on track. Friends and neighbors who are more than friends drove the boys places and watched them and offered help and food...the boys were ok. They were more than ok...they were showing me that (although they love me and still need me) they would make it if I was not there. In some instances (especially with our 14 year old), it was better if I didn't interfere.  It's a fitting metaphor that I can not feel my fingers just yet - I needed to loosen my clutch.

And, somewhere after that realization around 5 months, I was able to look at God again and say, "I trust You. I trust that You love me and that it will be ok either way." And I really meant it.

Memento Mori is Latin for "remember your death." It is important to look at our shared inevitable fate. We are going to die. I might die sooner than you, but "it's there" (When Harry Met Sally). It's incredible to me that I am at a place where I am not afraid to cross over into what is unknown. I believe in and trust in the One who is there.

But this begs the question...what next? I am spending this Lent asking what I'm supposed to do now that it looks like I'm staying for awhile.

I am working on "Memento Vivere" - Remembering to live.

So, In case anyone is interested, these are the books I'm reading during Lent:

 Remember Your Death: Memento Mori 

The Way of Trust and Love 

 And these are the pictures I'm using on my Home and Lock Screen of my phone. I think if you click on them you can download them. Or find them here (40 Days of Devotion) - there is also a Lent Spotify playlist on the 40 days site (so cool for prayer):

...Lastly, thanks for reading, Karen. I am so grateful for your prayers. B

Sutura

It turns out that I do not get a scan today. Insurance is resisting my having scans so close (last one was Dec 13). I am deciding that this just gives me more time to heal...so that the next scan will say, "No Evidence of Disease" (NED - the term doctors use now instead of "remission).

I read this beautiful story today in the book, "The Power of Silence" by Robert Cardinal Sarah. I need to hear it especially since Shawn is out of town and I had not one - but TWO boys come home from school after throwing up yesterday (one is still home)!!

"...a story taken from the golden legend of the Muslim holy men. One day the good woman Sutura went to find Tierno Bokar, the wise man of Bandiagara -- a village in Mali located on a plateau by the same name...here lived the Dogons, a people famous for its austere art, its complex beliefs about the origins of the universe, and its profound sense of transcendence. Sutura told him: 'Tierno, I am very quick-tempered. The slightest gesture affects me severely. I would like to receive a blessing from you or a prayer that will make me gentle, affable and patient.'  No sooner had she spoken than her son, a three-year-old toddler who was waiting for her in the yard, came in, took up a small board and struck her with it violently between the shoulders.  She looked at the toddler, smiled, and drew him against her and said affectionately while patting him, 'Oh! What a naughty boy, mistreating his mother!' 'Why did you not lose your temper at your son, when you say you are quick-tempered?' Tierno Bokar asked her. But Tierno,'Sutura replied, 'my son is only a child; he does not know what he is doing; one does not get angry with a child of that age.' 'My good Sutura,' Tierno said to her, 'go back home. And when someone irritates you, think of this small board and tell yourself: Despite his age, this person is acting like a three-year-old child! Be indulgent; you can do it, because you just were with your son who struck you so hard. Go, and that way you will no longer get angry. You will live happily, cured of your ailment. The blessings that will then descend on you will be far superior to those that you could obtain from men: they will be blessings from God and from the Prophet himself. Someone who endures and forgives an offense,' he continued, 'is like a large silk-cotton tree that the vultures befoul while resting on its branches. but the disgusting appearance of the tree lasts only part of the year. Every winter, God sends a series of downpours that wash it from top to bottom...Try to spread to God's creatures the love that you have for your child. For God sees creatures the way that a father looks at his children. Then you will be set at the topmost rung of the ladder, where, through love and charity, the soul sees and evaluates the offense only so as to forgive it more wholeheartedly.' ... Sutura corrected herself so perfectly that, in the last days of her life, they used to say: 'Patient as Sutura.' 

This is my resolution for Lent - to treat everyone as a naughty three-year-old. I am not sure how this will translate when it is actually my children that I'm angry with. But I thought that this was a beautiful reflection for today - and I love the image of a toddler whacking his mom with a board! I always tell people who ask about how much things hurt that "It's not as bad as having a toddler wham you in the nose with his head!" That's pain right there and it is always instantly forgiven because the toddler never really knows what he or she is doing and that it hurts so badly. I pray for the grace to love everyone the way I can love toddlers. :)

Colonoscopy #2 update

A very quick post to tell everyone that I'm so excited! My GI specialist (aka Dougie Houser) found no cancer cells left in my rectum/colon. He said it's basically "a regular colon." He was very exited and produced pictures to prove his lack of findings. He even said, "So...bag reversal next Tuesday?" He was dead serious...and I was bummed that I had to put him off because Shawn and I are headed to Nashville next week.

Actually, Shawn will be out of town for work tomorrow (which was the first day I could have had the surgery)...I have a PET scan on Wednesday...then we leave for Nashville next week. It's an eventful week of answers, I hope.

Still, the most incredible news is that THE BAG'S DAYS ARE NUMBERED. I am so grateful to God that I will be able to live without this "friend."  I will most likely schedule the surgery in early March, because there is a bit of recovery involved. Looking forward, I should have my normal stomach and rear end back and working before summer (can you say: "Mexican vacation?").

And I cannot express how grateful we all are that the my main tumor is totally gone. We will see how the PET scan turns out, but it looks as though the cancer might be in a bit of retreat (It's hard to even write this as an Irish-American cynic). But, I am feeling great physically and all of my doctors are feeling very optimistic.

I continue to trust in God. I'm looking forward to Lent (which begins 2/26) and 40+ days of really reflecting on these last 7 or 8 months since everything has changed.

Hope you had a happy Presidents' weekend!!

Valentines' Day

Tomorrow morning (2/14) I go in for a colonoscopy to see if there are any microscopic cancer cells remaining in my rectum (Stop! It's so overwhelmingly romantic!!). If no cancer cells can be found, we're thinking (the GI doctor said) that I will not have to have any major surgery on my colon. What an answer to prayer this would be. For the record, the side effects of colon surgery can be daunting (especially the closer to the sphincter the surgery is). Most worrisome to me is that surgery can effect the use of the muscles (ie: they stop working and so does the sphincter). Also, any removal of parts of the colon reduces the amount of space for poop and its normal "flow." This can lead to leakage and other - even less pleasant - issues.

**PSA get a colonoscopy if you are 45 or older!!**

So, tomorrow will be very important to me in the grand scheme of things. If there are no cancer cells detected, I can look forward to my only necessary surgery being the reversal of the ostomy bag (no timing on that surgery just yet). My imagination jumps ahead to a summer filled with no bag...but there are a few hurdles to clear before we get to that. 

I'm not sure if it's obvious that cancer re-growth/reoccurrence is the main issue with Stage 4 cancers (this is really true of all cancers - they come back and it doesn't help to deny it). Because my diagnosis was stage 4 rectal cancer, all of my doctors are focused on how to keep it from returning (except for the three small hip spots, I have no detectable cancer left). Standard thought is that the cancer will first return in my rectum in the location of my original tumor (hence the colonoscopy tomorrow). My GI specialist examined the area (yes, "ouch") and could only see scar tissue. This is amazing. He could not see any visible cancer. "It looks like a normal rectum," is his exact quote. My GI specialist is a great doctor, and he said he would prefer not to do any surgery on my rectum, so this colonoscopy is him being very thorough. 

Also, there is the added issue that I prefer not to return to chemo to "keep away" cancer regrowth. The standard of care is that (after this break for surgery) I will take some form of chemo for the rest of my life (the time-line has never really been discussed in detail). My oncologist said that I would most likely have the choice of going back to the 5FU pump every 2 weeks (which I would wear around for 2 days) or take 6 pills a day of a slightly different chemo drug. Neither of these options appeals to me if there is a reliable alternative. 

This is where the repurposed drugs come in. For clarity, I have been taking the repurposed drug protocol for about 7/8 weeks with the more intense drug (interferon) added for these last 3 weeks. I will have another PET scan next Wednesday that should give us some info on how this protocol is working (which is very similar to immunotherapy if you are familiar with that term). I am so grateful to my oncologist who is the doctor ordering the scans and weekly blood draws here at my local cancer center. My oncologist has been very interested and supportive through all of this. She is a gift from God to me because she double checks drug interactions and has been supportive of my desire to leave chemo behind. 

This week and a 1/2 of testing should give us some very valuable information. I will be sure to update these posts and keep everyone informed as Shawn and I travel to Nashville again to see Dr Cantrell the last week of February. Please say a quick prayer that God's will is done. 

And, as always, I cling to the prayers of St. Maria Faustina: 

Eternal God, in whom mercy is endless and the treasury of compassion -- inexhaustible, look kindly upon us and increase your mercy in us, that in difficult moments we might not despair nor become despondent, but with great confidence submit ourselves to Your holy will, which is Love and Mercy itself. Amen. 

(and a small update that my Goddaughter is home and in good health after her surgery! Also, our friend's eyesight is saved and he's doing well.  Sadly, my uncle, Leo, passed away last week. Please say a prayer for him. )

50!

I firmly intend to spend this entire year acting out this SNL skit:

I turned 50 yesterday.

On her 50th last year, one of my closest friends told me  - "Half-way to Glory!" So I will also be saying this for the next year. It's bittersweet to think that I might be more than half-way to glory but I console myself with promising I will never have hair like Sally O'Mally.

Instead of trying out for the Rockettes, the boys and I went skiing in Steamboat Springs over a very  snowy weekend (which was awesome). We skiied for 2 days, saw a Guinness world record giant firework and enjoyed each other's company (mostly).

Shawn spoiled us with a ski-in-ski-out condo. This is the boys sitting by our patio area. 

"The Ster" (H) and I enjoying a lift. The boys have become great skiers and it's good to have time alone where they are captured on a chairlift with just me! 

 This is us waiting for the giant firework on the streets of Steamboat. I didn't take a picture because I wanted to actually witness it. Notice C's little smirk as he pretends to be too cool to watch. He actually loved it. 

Yesterday, I was incredibly blessed with birthday flowers and a balloon and an ice cream cake. It was a very special day. Thank you for all of the love!! 

     
Lastly, I will admit that I am still struggling a bit with fatigue, so the birthday was much more calm than I had always planned (full disclosure that I slept through a lot of the day). But Shawn and I are are hoping to throw a party in the summer which will also coincide with our 20th wedding anniversary. We're just working through this "waiting" portion of my recovery/life. I have a colonoscopy for Valentines' day (romantic, non?) and a PET scan next Wednesday. These tests should help shape next steps and set the stage for the spring.

I am just incredibly grateful to still be here and to have these days and months and (God-willing) years to be alive.

50 came so fast (right, Bets?)

The trudge of January and February

"The Rich person has a lot of things, but he is smothered by them" Mother Teresa

I have been amazed at how quickly I can go from "frightened panic about dying" to "totally bored out of my mind with daily responsibilities."

In this calm (thank you, God) period of waiting - when there is nothing to do but take my medications and have weekly blood drawn (all signs look good) - my laundry and dishes pile up, routine medical appointments, school assignments and sporting events fill the calendar - snow days and late starts send my children into fits of excitement and then valleys of despair - I find myself lonely and bored many days.

I call it "the trudge." Real life is filled with trudge. Just a month ago, I was heart-achingly grateful to live daily life. It was a joy to do real things with the people I love. Oh, how fickle I am. It is not that I am ungrateful for these days...it's just that dishes are gross. They're boring. Laundry does not feel heroic compared to fighting for my life. Even though the threat of cancer re-growing is not gone, someone still needs to sign up kids for sports and cancel what is not working and order t-shirts for academic decathlon. The trudge is real. The trudge is as hard as fighting cancer somedays because no one is going to pat you on the back for just doing what moms and dads have done for hundreds of thousands of years.

But I will.

I want to encourage you through your trudge. Your trudge is where you show your strength - your grit. Your trudge is where you show that love really does conquer everything. Because your trudge is your service to the people you love. It's the boring moments where you fold one more shirt because he loves it. It's the trip to the grocery store for her favorite breakfast food or milk for the baby. It's two round trips to school because they forgot their folder and won't have anything for the day without it. It's listening to your lonely college student longing for friendship and struggling with his future. It's sitting with your adult child as they worry that they'll never find a partner in life. It's longing for grandchildren that do not come.

Right now, we have loving friends & family members who are dealing with their own very real health concerns. Their trudge is long days holding a baby at the hospital, another possibly losing vital functions of their eyes, an older family member beginning the frightening days of hospice. There are quiet, radical changes in lives that stop people dead in their tracks but no one notices because it looks like more trudge.

But everyone has the trudge and it seems to peak in January and February. You don't have to be dying to die to yourself. Every morning when I pray, I pray for the grace to face the trudge...because I hate it...but I love the ones I have been given to love, so I pray to remember that I chose them and I love them. And soon, it will be warm and I'll have shorts on again. (And hopefully the bag of poop will be a not-so-fond memory!)

Actually Living It

It's been over a full week since my last post. I do understand if you've left/stopped reading as things have really slowed down here. I am recommitting to posting as I move into a more "normal life" with the repurposed drugs. Because normal life is important too. 

As a quick update, I am taking a number of drugs (all listed in a previous post) with the addition of interferon (an antiviral protein) that I take as a shot three days/week. I haven't noticed too many side effects to any of the drugs (although I am struggling with the continued side effects from the chemo). I have started "oncology rehab" to try and regain feeling in my fingers and the soles of my feet. Rehab also requires 20-30 minuets of exercise a day as this will move oxygen and blood throughout my body more quickly and hopefully allow the myelin sheathes around my nerves to repair so that everything I touch and eat does not send an obnoxious tingling sensation throughout my body. I have a positive praise report that the cold sensitivity is gone so ice cream is keeping me sane once again! 

The posts have slowed down lately because life has picked up. We're back to "normal busy" around here and I'm loving it. I will admit to the one difficult side effect of the interferon - I am told that for the first two weeks - it increases fatigue and depression. I can attest to a hazy sadness that has made  daily life difficult. I mean, does anyone want to do laundry and dishes every day? Does anyone want to clean out a pantry or a fridge while trying to decipher what's for dinner? I have noticed that the interferon has set up an emotional "wall" against some of what used to be automatic actions...I just hate them...but I know that many stay-at-home parents and grandparents struggle with these feelings and I try to offer up the struggle in order to help everyone else who is struggling. 

No...you are not the only one who wants to throw school lunches into the trash because your kids are whining about them...you are not the only one who only takes a shower before a school function because "people will talk." I stand in solidarity with you if you are currently ignoring 300+ emails and at least 5 important text messages. We should go find a beach (at least for this next week) and a pitcher of margaritas (I've found that I really like margaritas on the rocks now). 

I want to encourage everyone that January and early February are bleak for almost everyone. That mental illness, depression and sadness (ennui if you're posh) can be just as real suffering as cancer. Don't tell yourself, "It's not cancer, just get over it" (unless that actually helps you). I have both ailments right now and the sadness (whether drug-induced or not) is harder for me at this point than the actual cancer. What helps me is sharing it with my husband (don't roll your eyes...your spouse wants to love you). Shawn has told me to go easy on myself. He got the boys to do the laundry and made dinner during the Super Bowl (nachos...a favorite). Remember that God loves you and is there to listen - and so are the people who love you. And the days are getting longer now, so get some sun. 

Photos of our day-to-day:

 H had a class poetry presentation and then a presentation on the solar system. He and his friend, M, presented on Neptune (the first planet found by using math). This was our first family planet report not on Uranus. I guess we've had enough anuses this year (ha). 

 D and his good friend (also M) and M's little sister auditioned for parts in a local play. D will be "Papa Bear" in Shrek Jr the spring! So exciting!

And C's basketball team had their first win on Saturday with a last minute buzzer-beater. It was exciting and the boys improve every game.

As many of you know (from Facebook), my little God daughter had open heart surgery this last week. C is doing well and we're still praying that her heart beats become regular so that she will not need a pacemaker ti be implanted. She is just a gift to the world...she is a big fighter. If you have a moment to offer a prayer (or a thought), please do! 

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!)