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. )

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!