Chemo #13

Ahh...the glories of surgery recoup+chemo+COVID 19+social clampdown...

First, I know that I said I'd post a few days back and then didn't.

The thing about all of this is that I feel like I am constantly checking myself for symptoms. How do you know if you're catching something you've never HAD? How do you know if your Spouse and precious off-spring have become harborers of a slow growing killer or NOT? Why do I want them all just to stay 6 feet away from me (for reasons that have nothing to do with the virus)?

Compound this with recovering from (a still glorious) surgery.

I had some "gas" complications - Seriously, I try not to question the suffering in all of this, but did I have to get all of the embarassing sicknesses? Sunday, I was having pretty bad pains all over my body...

Conclusion #1: I've got the COVID. Elon Musk better be making those ventilators.

Also, I had a tiny temp (not much more than my standard since the surgery)...

Conclusion #2: aches and temperatures are the signs. I haven't been able to smell or taste much since the first 12 rounds of chemo, so that's out as a diagnostic for me.

But...I have been taking hydroxychloroquine (currently freaking out that the rich celebrity people are hoarding my new cancer meds) and I was given amoxicillin after the surgery -- so I was unknowingly taking the drugs being studied as the cure. (score 1 for cancer & what I believe is God's Hand in this, really)

"Spouse had enough alert": Shawn called my GI doctor (the on-call surgeon) who proceeded to tell us that almost no one has surgery complications after their two-week check goes well (which mine did). New symptoms are rare to the point of non-existent. He said, "She should take Colace (stool softener) and Gas-X (pretty self-explanatory). And move around" (shout out to my sister-in-law who said I should try the gassy baby trick of pushing my legs into my stomach - during the family zoom call). The doctor was pretty sure I just wasn't moving around much (uhh...it's a pandemic, doc, and I just had abdominal surgery ... ya' think?)

It's a sad weekend when you are looking forward to chemo so that the medical professionals can check you out because there is no way in God's Green Earth that you are stepping inside a hospital unless you have too.

All of that drama to say that after being checked out for chemo, I had no temp today, my blood work was, "great" (so no infection of any type) and it's probably hard to live with me "olfactorally" speaking. It's a Silent But Deadly way of letting out my aggression.

The two younger boys begin school tomorrow because last week was their spring break.

I apologize to the world because I think God's just making me do-over the terrible job I did homeschooling last year. Our oldest actually said, "Why didn't we homeschool like this last year?" I just stared at him and then said "This year, you have 10-12 professionals working on your 5 hour day...last year, you just had me." (for clarity, our middle school changes classes and so he has a different teacher for each period as well as tech support at the school and a Chaplin and Principal - there are A LOT of people vying for Chromebook time up in here).  I am so impressed with D's school and how they are handling it.

And Chemo went the same as always - except it was lonely, and empty, and I prayed a lot...so that's probably better, honestly.

Doing Nothing - and it's OK

Like everyone in America (and all over the world, it seems) our family is busy doing nothing. Added to this is the fact that it snowed the other day "more than any other day since 2016." Seriously, that was on the news. So, of course, Shawn and our boys had an epic snowball fight after building ice and snow forts. Not for the first time, I was grateful to have a husband who "plays." 

Shawn's offices (here and in Houston) are closed and everyone is working from home. Shawn has definitely been working while the boys fight, work on school, eat, fight again and then complain. I am thankful that we homeschooled last year so it has not come as a giant shock to all of us. The total lockdown we are in has been more difficult. We are a social family. Or, we were. I'm so thankful to have boys old enough to understand. C said, "It's because we don't want you to get sick." I feel badly that the cancer is even causing quarantine to be more difficult for my bubs...but that's just the reality. 

(video is not working! I'll try again tomorrow)

Tonight, we also went outside at 8pm to "make noise" in honor of the health care workers and first responders who are still working so hard to keep people alive and safe. I wish we could list everyone here but we pray the Rosary every night for so many of you...especially: Aunt Sally, Tara Valle, Carrie Heimbecker, all of my doctors, Lt Tim Urban (yeah!!) & also for the other "high risk" people we know: Charlotte, Jeffrey, Jack, my chemo-crowd, Randy S, Xavier Moran.

I have so many thoughts about all of this. But tonight I was thinking of how everything we used to do has been cancelled - non-stop sports and drama and youth group and homework -- that we are all playing RISK and sitting together talking. I know that some families are really struggling, so we worry for them and wish we could help...but this has been a good time for our family in a lot of basic ways.

I do officially have chemo on Tuesday morning. I will definitely post this coming week.

Jesus, we trust in You.

Repurposed drugs for the possible WIN!!

I hope everyone is doing alright during this quarantine. Miraculously, our boys are getting along (for the most part) and we have settled into a semi-peaceful rhythm. All of us are in good health - I mean, aside from the cancer - and I got my staples out from the surgery today along with an "all clear" to eat what I'd like.

With this comes the go ahead to begin chemo again. It looks like I will go in next Tuesday, but obviously things are less certain at this point. I know that there are very strict rules governing the chemotherapy center now...but I will have more on that in a later post.

I wanted to post today with what I think is crazy news! One of the repurposed drugs I take for the cancer is being studied as a possible treatment for COVID 19!! I'm attaching the article if you're interested...but Dr Cantrell says it's a good sign in terms of my personal health.

The name of the drug is Chloroquine - it's an anti-malarial drug. See details below: 

The coronavirus, known as COVID-19, is viewed as a particularly potent threat because there is currently no medical treatment and no preventative vaccine, so any hope of slowing down the spread and death rate could be significant.

What's the treatment? Multiple studies showed that the use of chloroquine to treat the coronavirus can lead to faster recovery and shorter hospital stays for patients.
Chloroquine is normally used as an anti-miliarial drug, used for the prevention and/or treatment of malaria. It's available in the United States by prescription, and can be safely taken by men and women of all ages, including pregnant women.
Doctors in China and South Korea have observed that the coronavirus patients treated with chloroquine show reduced fever and better lung CT images, and so far research has not found any negative effects of the treatment.

From a study done in consultation with Stanford University School of Medicine, UAB School of Medicine, and the National Academy of Sciences:

According to South Korean and China human treatment guidelines, chloroquine is effective in treating COVID-19. Given chloroquine's human safety profile and existence, it can be implemented today in the U.S., Europe and the rest of the world. Medical doctors may be reluctant to prescribe chloroquine to treat COVID-19 since it is not FDA approved for this use. The United States of America and other countries should immediately authorize and indemnify medical doctors for prescribing chloroquine to treat COVID-19. We must explore whether chloroquine can safely serve as a preventative measure prior to infection of COVID-19 to stop further spread of this highly contagious virus.

So very soon, everyone might be taking one of my repurposed drugs.

Thank God that there are people always studying "another way."

 

Update after surgery - and the coronavirus continues

I was tempted to title this post "...it's the end of the world as we know it - and I feel fine." It seemed too cheesy even for me.

But seriously, what a week this has been, right??

Last Monday (I cannot believe it was only 7 days ago), I was unhappily sticking to my "clearing out" diet while we awaited my Tuesday "ostomy-reversal" surgery date.

Tuesday (3/10), I arrived at the hospital at 5:30am for 7:30 am surgery. I was excited to see the last of my "bag" but I was basically hangry-starving after 2 days of not eating. Surgery was totally routine and I was in my room by 9am. What an amazing thing to look down after 8 months to see only staples in my belly. No bag, no poop. It was (and is) very exciting to me.

I had a few visitors, made myself get up and walk like a good patient and vegged out waiting to be released.

Of course, we all know that the world went crazy Wednesday morning(3/11). First, the President declared a National state of emergency. Second, pretty much every business or group that has ever been given my email started sending their coronavirus plans & statements to my inbox. Third, I was told that my boys' school was cancelled (they gave an ending date but it's "indefinitely" and I think we all know it).

I received a number of emails and/or texts where people teased that this is a terrible time to need twice the toilet paper that I had been using for the last 8 months. The irony was not lost on me. But I wouldn't take that bag back for the world.

By the time I was released from the hospital on Thursday morning, nearly everything had been cancelled. The world is reeling.

In some ways, I feel like everyone else has caught up to how I've been feeling for awhile. I think we all know that most people in the US will not die from this virus, but it's the total uncertainty of what will happen between now and the summer that has everyone on edge. Will the hospitals have enough beds? Enough ventilators for the people who develop pneumonia? It seems like this is a problem in Italy right now - and they are 13 days ahead of the US. I am a little desperate for the health of our friends with compromised immune systems: my God-daughter who just had open-heart surgery, her older brother with cystic fibrosis, our next door neighbor, my chemotherapy friends who are older.

I honestly don't know if I fall into the "compromised immunity" group. Up until now, my white blood cell count has been very high and healthy. Our family has decided to go on total lockdown until I am able to see my doctors. I see Dr N (my GI doc) on Wednesday and he will most likely give me the "all-clear" to begin chemo again. I don't have a chemo schedule yet but this has become infinitely more complicated as the cancer center develops a plan to keep everyone as healthy as possible. I was there having blood drawn this morning, and it seems as though they will only allow cancer patients in to the office, we have to all wear masks and be totally separate from one another the entire process (to recap, my chemo takes around 5 hours to complete). I will update the blog when I know more. Quite frankly, I don't think the office staff was sure about what was going to happen.

What I can say with all certainty is that I am very peaceful about everything. Our entire family is peaceful and enjoying one another. I feel as though God gave me almost a year of prep in trusting that He loves us and that it's all going to be alright. We don't have any anxiety at all. Not because we're crazy, or avoiding the truth, but because we know that this is all in the Hand of God.

I'm praying for everyone and you know where we'll be if you need us!

More tomorrow!

Dr Cantrell visit #2

What a crazy week we had last week and this past weekend was just a continuation.

Shawn and I met with Dr NP on Tuesday and then flew down to Nashville to see Dr Cantrell on Friday - flying in the face of coronavirus fears with two flights (up and back), two uber rides, and a visit to a doctor's office. Just for the sake of clarity, the chemotherapy I take for colon cancer does not affect my immune system the way chemo for breast cancer or leukemia would. I do not have a compromised immune system, so it was not incredibly dangerous for me to fly.

After the "chemo break" scans, it was important to us to get an update on where I stand regarding the cancer. Dr NP was calm but recommended getting back onto to chemo immediately and adding in radiation to my hip. Shawn and I found it interesting that radiation does not "kill" cancer or even get rid of it fully...it is used to slow the growth of cancer.

A few days later in Nashville, Dr. Cantrell explained that "according to the scans, there is not new cancer spreading...all of the places that grew during the chemo break were spots that appeared even in my first scans." Dr. C was very positive about using the repurposed drugs with the chemo. He explained that this is when he has gotten the best results. He has had a number of patience reach "no evidence of disease" with the repurposed drugs and chemo together.  I have not put both things together yet, so this will be a third path - chemo plus the repurposed drugs. Dt C was very positive and explained that "beginning from a very healthy place is the most important thing and you are very healthy right now." Dr C was incredibly positive about moving into the next phase. The one difference is that he definitely did not think I should have radiation because radiation would "make it impossible for you to have future surgeries on your hip." I can't believe that my hip is still the big thing.

Today, I am prepping for tomorrow's surgery where my ostomy bag will be removed/reversed. I should be in the hospital for at least two days and then home. I am incredibly excited about the surgery even as the hip pain is making for a bit of a struggle. A clear liquid diet today and then a 7:30am surgery tomorrow.

The plan is for the doctors to monitor my recovery and then begin chemo ASAP (probably next week). Never a dull moment!!

In wonderful news, D was in an all-day Academic decathlon competition on Saturday and he came in first for his section, religion. His team did very well and came in 2nd place overall (with a first place ini the logic quiz). It was an exciting weekend !

Hearing God's Voice

Sometimes - like today - my boys and I will get into a really good conversation on the way to school. Today was more of a simple day where we were just discussing everyday topics. But, at one point, H says, "When I'm in high school, we can..." I forget what he said because my heart had stopped. H is 8.  He's in third grade. He will be entering high school in 5 school years.

Five years. The boys jumped out of the car at school and all I could think was, "Please let me be here, God. Please." I pray the Rosary on the way home - so I started praying and then I started crying. When we pray the Rosary, we think about (reflect on) different parts of Jesus' life and/or death. Today (because it's Thursday), I was praying what are known as "The Luminous Mysteries." These are five events in Jesus' life as recorded in the Bible: His Baptism, the Wedding Feast at Cana, The Proclamation of the Kingdom of God, the Transfiguration, and the Institution of the Eucharist (the Last Supper).

I was reflecting on Jesus' baptism where God says, "This is my beloved son with whom I am well pleased." I thought how nice it must have been for Jesus to hear the voice of God when He knew that it was going to all end in His death. While I prayed I said (to God), "I just wish I could hear your voice." Even if I am also going to my death, it seems like hearing from God would really help in the motivation department.

When I got home, I decided to read the readings from today's Mass. Just a little background that every day in almost every Catholic Church, there is a church service (we call it "daily Mass") and the structure of the service/Mass is always the same. There is a reading from the Old Testament, a reading from a Psalm and then a Reading from the Gospel (a New Testament reading is added on Sundays).  These readings are (hypothetically) the same in every Catholic Church throughout the entire world. So, if you go into a Mass in Colorado you would hear the same readings that day as at a Mass in California and Canada and France and Hong Kong.

There are a lot of publications and apps that have these readings for anyone to read every day. If I can't make it to Mass, I'll often read these readings for my prayer.

The first reading was from the book of Esther:

"Queen Esther, seized with mortal anguish, had recourse to the Lord. She lay prostrate on the ground...and said: God of Abraham, God of Issac, and God of Jacob, blessed are you. Help me, who am alone and have no help but you...Turn our mourning into gladness and our sorrows into wholeness..." 

The Psalm was 138:

Lord, on the day I called for help, you answered me. "When I called, you answered me; you built up strength within me...Your right hand saves me. The Lord will complete what he has done for me; your kindness, O Lord, endures forever; forsake not the work of your hands..."

The Gospel was Matthew 7:7-12:

The Answer to Prayers.7^e “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.^f8For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks, the door will be opened.^g9Which one of you would hand his son a stone when he asks for a loaf of bread,^*10or a snake when he asks for a fish?11If you then, who are wicked, know how to give good gifts to your children, how much more will your heavenly Father give good things to those who ask him.^h

Maybe I didn't hear a loud voice but I truly believe that God was speaking to me in these readings. That He heard me, that He's "got me" and that everything will be ok.

Shawn and I head to Nashville for just the day tomorrow. We'll be home in the evening. Just in time for the first case of Coronavirus to reach Tennessee. But it's totally worth it to get some time with Dr Cantrell and hear what he thinks about my latest scans.

Scan #4 results - Roadblock

My friend, Tom (a cancer survivor whom I've mentioned before), was very insistent with me that "cancer is a marathon, not a sprint." He told me to be ready for cancer to throw some curveballs and that it never seems to go the way we expect.  Also, this isn't a movie script, it's real life. And if there is one thing I know about real life it's that it can be both beautiful and hard at the same time.

My scan results were disappointing. Not the worst or devastating but you never want your oncologist to text and say, "They weren't good." That's exactly what happened on Monday. Dr NP responded to Shawn's text with, "They aren't good. Let's schedule a meeting."

I have been on a "break" from chemo for the last two months. I have been taking nothing but the repurposed drugs and waiting to see what happens. We knew that this is the period of testing and hoping...and Dr NP scheduled a scan so we could see what is happening.

Well...The little spots in my hip grew a bit and are taking up a lot more sugar (What the PET scan tests). They are "very active" according to Dr. NP. Also, one of the liver spots has "reactivated" and I have two new spots in my lungs. It threw us for a loop -- for sure -- and Dr NP was disappointed because normally a chemo break can be about 6 months with no growth. She explained that my body "responds really well to chemo but it's obviously a very aggressive cancer you have..." (not news, really and definitely not bad news overall).

The very positive information is that my rectal tumor is still 100% gone (which is weird to all of the doctors). The cancer is not growing back there...so I am still able to have surgery to reverse the bag. The surgery is still on for next week and Tuesday I will wake up and it will be a GREAT DAY if that bag is not hanging off of my stomach anymore. Quite honestly, the bag being removed will change my experience of chemotherapy. Taking a quick shower or hopping into the hot tub will be real possibilities. I continue to be totally grateful to God that, inexplicably, the main tumor site did not reveal any cancer and so I will be back to a closer form of myself before I begin another fight.

Right now, the plan is that I recover from surgery for a few weeks and then begin full-strength chemo for another 12 (-ish) rounds. I will be seeing a radiologist next week and I will have 10 planned rounds of radiation on my hip so that the bone doesn't break or disintegrate. I will have more info on the radiation after meeting with this new doctor. I will be having radiation during the chemo and I'll be sure to detail this process as it begins.

My only request is that everyone would pray. I am still in both great spirits and I feel pretty good. The only pain I have is in my hip (bone pain is no joke) but my cancer remains very small and not widespread. Please pray that my body continues to respond to the chemo well and can be "wiped out" again with the help of the radiation.

If you remember, I am praying for the intercession of Bridgey Sullivan for my healing and the anniversary of her passing is March 11. Her aunt (who is a religious sister) sent me this novena prayer and we will be and have been praying it for nine days. If you'd like to join us, I'm attaching it here:

Almighty Father, 

You have given the saints in heaven eternal happiness and they now live in the fullness of your glory. Because of their holy love for you, they also care about me and my family and friends. Thank you for the gift of their love, friendship and the witness of their holy lives. In particular, thank you for the gift of our little Bridget.  

Bridge, I ask you, who loved us so well during your earthly life, to intercede for Bridgette Grady and her complete healing.  

Father, we pray that You bless Bridgette with Your loving care, renew her strength, and heal her in the loving name of Your Son Our Lord Jesus Christ through Bridgey’s intercession.  Amen.

O Mary, conceived without sin, pray for us who have recourse to thee.

- Continuing to run my race. 

More tomorrow. 

St Therese and my crazy

No PET scan results yet. I thought I'd start with that - even though the results are actually far from my mind. Do you know what IS on my mind? 

My absolute insanity. Like, how sometimes I think I am certifiably nuts. 

I mean, I've lived this entire (almost) a year dealing with cancer and praying and changing and watching my entire family be changed - but still I freak out about being over scheduled and play dates and sleep overs and the fact that I want to "Marie Kondo" my entire house and pretend we're moving so that I can give away 95% of what I own (or just throw it away).  Also, I am taking "cancer" trips to Nashville,  France and - hopefully soon but I have no plans - California. And I want to shove in a summer trip to Europe as long as the coronavirus isn't ravaging everywhere because it is bad enough to die of cancer, I don't want the flu on top of it. 

If you read that last paragraph really quickly and without breathing or stopping, you will have an idea of what it is currently like to live in my brain. 

So, it has clearly gotten more sunny since the "trudge" has been replaced with sketchy drug-addict mania. 

And somehow this is happening during Lent, when I am meditating on my impending death, and all I can think is "What the...?" 

But, still, I pray. And the Holy Spirit must have been directing my prayer/reading choices because I'm praying through a retreat about St Therese of Lisieux and today I read her words: 

"I must put up with myself as I am..." 

You have no idea how hard this is for me. With a brain that speeds at 1000 words/second and a heart that is constantly triple and quadruple-guessing my every move...how do I stop (picture an animated Wiley-E Coytoe) and just accept myself when every thought rattling through my brain says, "You are not good enough. There is more to do. Work harder. Be more calm, more gentle, more kind...be more spiritual and sweet and humble..."

Yeah - whoever that person is (the sweet, humble, gentle one?) it's not really me.

And St Therese was a spoiled brat for awhile (like, her entire childhood), but she wanted to be a Saint. She wanted to love God with her entire being. He healed her self-centeredness but she still worried that she would never reach the heights she was hoping. I love this about her. She is my neurotic-Saint friend. And her meditations bring peace to my heart:

God could not inspire us with desires that were unrealizable, so despite my littleness I can aspire to holiness. It is impossible for me to grow up, I must put up with myself as I am, with all my imperfections; but I want to find how to get to Heaven by a little way that is quite straight, quite short: a completely new little way...I too would like to find an elevator to lift me to Jesus...

Even though I am certifiably nuts right now, I am encouraged to "put up with myself" this Lent and to remember that God loves me. Fr Philippe says (commenting on St T):

So here is the elevator: Jesus' arms -- the mercy of God who gives himself through Christ - are going to lift up Therese to what seemed totally inaccessible: real holiness. 

Let's hear it for the crazy people just riding in Jesus' arms.
You've got a friend in me (too much Toy Story early on)

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. )