A super specific prayer.

Ok guys.  God sends me weird signs all the time.  Weird?  Maybe not that weird.  Unexpected?  Yes.

This is what I would call a long shot and I might be missing something….and I can fill you all in later…

But pray that, when I was first diagnosed, they forgot to do a test to see if I am MSI-high or MSS.  And pray that I am MSI-high.  OK?

I know a lot of people read this, and this is the easiest way for me to reach everyone.  I believe in the power of prayer.  Believe with me!

 

EDIT: ok, so I am not MSI high.  It would have been cool because that’s the magical kind of colon cancer that we know responds well to immunotherapy.

On a good note: looks like we got through to insurance (it has been a frustrating week, to say the least) and I should be starting immunotherapy regardless, hopefully tomorrow. I’m taking a lower dose of the Parp inhibitor lynparza (remember that jerk?) and so far, pretty good. Crossing my fingers that the addition of the immunotherapy will double the benefits of that Parp inhibitor!

Cancerversary. And updates.

In five days, I will celebrate my 4th cancerversary.  So good job, me.

Also, I have been MIA for a lot of reasons, and I figured everyone deserved some kind of update.

Since I last wrote, a lot has happened:  Florida, liver biopsy, abdominal/pelvic MRI, CT scan, back MRI, breast ultrasound, a trip to NIH…and a wonderfully well-attended, successful fundraiser at Benigna’s.

I’m going to try to summarize things.  Liver biopsy was done mostly to get some cellular information for some studies at the Mayo Clinic – it was an uncomfortable procedure, and most of the tissue they got was necrotic.  Good and bad, I guess.  Pelvic MRI showed no change in liver tumors as compared with previous CT and PET scans, so that’s good.  Breast ultrasound was normal.  CT scan showed small growth in lung nodules again.  And the back MRI showed a weird 6mm spot in a muscle that connects my spine to my butt – but no one is sure what that is at this point.

Results of the CT were followed by a bunch of phone calls and emails to and from Dr. Joshi at Hershey, Dr. Kasi in Jacksonville, Dr. El Deiry at Fox Chase, and NIH.  And me.

After lots of discussion and decision-making, the plan is to combine a PARP inhibitor (Lynparza – that jerk of a pill that made me feel crappy in the spring…but a lower dose) combined with an immunotherapy infusion that I will get once a month.

I’ve been off chemo for a few weeks while all those drugs are getting approved and what-not…it has been nice to not worry about chemo every two weeks, but honestly, really scary to think of all that could happen during that time without treatment.  I’ve been having some pain, kind of all summer, that I thought was partially fatigue…and the pain (in my back and abdomen) has been increasingly annoying.  So needless to say, I’m anxious.  I’m trying some digestive meds over the weekend to see if they help (because the pain meds could be slowing down my digestion and making everything uncomfortable), and calling the doc on Monday with an update.

I’m supposed to start this new treatment plan next week…what a wonderful way to celebrate my cancerversary! ha.

On a great note, our fundraiser at Benigna’s was fabulous.  Thanks to all of you who were able to come or support us in any way!  xoxo!

 

Busy September!

WHEW!  Why is it already September?!?

Ok, so this month is crazy.  It’s gonna be nuts.  But I hope in all of the wonderful ways imaginable.

We just wrapped up a weekend of family fun – every Labor Day weekend, Grammies and Kathy come visit.  We generally round up the rest of Tim’s family and eat and talk and laugh the days away.  I love this yearly bout of fun!

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Next week (September 10-11-12), Tim and I are headed to see Dr. Kasi in Florida again.  It has been a little crazy organizing things, but it is happening.  Tim found super cheap flights to get to Florida, and an organization called PALS is covering our flight home.  The American Cancer Society hooked us up with a super discounted hotel fee.  And our neighbor works for Enterprise, so she can get us a deal on a rental car.  Xander starts school that same week, but Tim’s brother Thomas is going to be staying with us and helping out a few days a week, starting next week…so between him and the Grandmas, I hope all that is covered.  I hate being away for his first day, but we have to do these appointments.  Dr. Kasi has me scheduled for an abdominal/pelvic MRI, blood work, an appointment with him, and appointment with a research team, AND a biopsy.  All in the course of two days.  Dude knows how to get things done.

And THEN…on September 29, we are having another big fundraiser at Benigna’s Creek Winery.  This year’s is called “Be Well at Benigna’s”.  They are so kind to help us out, and we have over 10 vendors participating…I hope it is as fun and successful as last year!!  Here’s the flyer!  Designed by Kristen Good, my amazing creative friend!

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I hope to see a bunch of you readers there!  But if you can’t make it (apparently Penn State decided to schedule a game on the same day…I mean, can you even imagine??), I’m going to post a handful of links that you can use to support our efforts.  Earnings from the fundraiser will help with:

  1. Travel, food, housing, etc. – you know, travel-related costs as we continue to see this doctor in Florida (and for any other specialists I see at NIH, Fox Chase, etc.)
  2. Supplements and treatments not covered by insurance (that might include the chiropractor, my holistic “witch doctor”, wellness massages, etc.)
  3. Continuing to raise money for First Descents, which is a program that benefits young people with cancer.

This link will take you to a Go Fund Me that some friends of mine created to support the winery event (thanks, league of amazing ladies).

Here’s the link for my First Descents page.  Donations will go directly to them, but it benefits me, too.  The more I raise, the more potential life-changing adventures I can go on!  (For example, I’m headed to Costa Rica in November!!!)

And here are some links for vendor shopping!  Some great women who sell great products are holding mini-fundraisers for us if they can’t vend at the actual event.

Erin Roller and her 31 bags!  and Kathy Ferster and Lemon Grass Spa products!

So!  Mark your calendars.  (and we still technically need a DJ if you have any leads or just want to volunteer yourself. haha)

xoxox

Florida

This is going to be a long post; I’m trying to figure out where to start.  A week ago, I was feeling pretty heavy.  Just overwhelmed and worried and mentally drained.  Tim was away for the week, I was trying to figure out an alternative for Xander’s preschool/childcare for this school year, I was prepping for another chemo treatment, and I couldn’t get flights.

Flights?  “Flights for what?” you ask.  Well.  About a month ago, my friend AJ (from First Descents – she’s got the same cancer as me) sent me a text that said, “I just saw a great doctor”.
Who?
Dr. Kasi.
Where?
Jacksonville, Florida.
How? (AJ’s from Nebraska.)
Angel Flight Network.  This is another Mayo Clinic site (AJ had been going to the Mayo Clinic in Minnesota.)
Well, then.  Tweet me the deets.  So she did.  And I told Tim about it.  And Tim said, “I don’t want to go to another specialist.”  And I get it.  It is EXHAUSTING.  The traveling, and the planning, and the finding of child care, and the paying for food…oh, and the actual EMOTIONAL exhaustion of filling out forms, going over my medical history (again. and again. and again), and actually having the appointment.  I didn’t blame him.  So I said I’d just take someone else.

And then I called and made an appointment for August 15th.  And then AJ said she was going to be there on July 31.  And then I emailed this doc in Jacksonville directly and politely asked if he had any availability on or around the 31st so I could see him and AJ at the same time.

And the guy emailed me back within the hour, CCing all the schedulers, and said, “Yes! Override the system and put Maria in for 5:00 pm on the 31st.”  So of course I texted AJ and told her I’d be seeing her on the 31st.  Also, I think Tim realized that I was serious about this whole Florida thing, and he decided he should go, too.

Then I contacted the Angle Flight Network and the Corporate Angel Network to figure out flights (these guys help cover flights for cancer patients or medical appointments/treatment).  And as of Tuesday last week, there was NOTHING available for us.

Shoot.  So again, I contacted AJ, this time with the bad news.  We couldn’t get flights.  I’d have to reschedule.  We’d miss each other.

And you know what she did?  She and her husband gave us their flyer miles so we could get to Florida.  In fact, we just got home this evening.

Do I have angels surrounding me on this earth?  YES.  Was the trip worth it?  YES.  Did Tim end up going?  YES.  Do I feel lighter than I did a week ago?  YES.  Did God and the universe line things up just perfectly?  YES.

You guys.  This doctor was a wealth of knowledge and had so many NEW ideas for me.  I’m going to try to share them on here so that I don’t have to have this conversation 50 times.  So try to keep up; it’s about to get medical.  (re-cap: I was diagnosed with stage IV colon cancer in October 2014.  At the time, the cancer was in my colon, liver, lymph nodes, and lungs.  I’ve been on various combinations of chemo for 3 years 9 months.  Chemo has worked for me – my tumors are either dead, calcified, or tiny..but they are still in all of those places.  When I met with surgeons years ago, surgery was not a viable option because my liver was like swiss cheese.  e.g., if we can’t remove those liver tumors (even if they ARE dead), it doesn’t make sense to do other crazy surgeries that would force me to be off chemo for a period of time.)

Now then!  New information!  First of all, Dr. Kasi recommended some additional testing.  He said I should have an abdomen/pelvis MRI to really get a good look at what’s going on in my liver (etc.) these days.  I’ve never had one, and he said these are the best “scans” for this area of the body.  He also had me do some blood work to send for additional genetic testing at another location, and he did a special “cheek swab” test that will test my cells to see what drugs I would or would not respond to.

We talked about clinical trials that HE is doing – by the way, this guy spends 3 days seeing patients and 2 days in the lab actually doing the research.  There is a trial opening up soon that involves immunotherapy and a Y-90 procedure, which would focus on aiming my immune system at my liver to get those tumors in there.  There might also be trials that would involve “crioablation” – freezing part of a tumor – and combining THAT with immunotherapy.  Again, another way to “turn on” my immune system so that it recognizes the cancer as an enemy and attacks it.

We talked A LOT about my tumor mutations – I had two mutations to begin with years ago (a BRCA2 mutation and some other one) – but now I have five mutations, including KRAS, which happens when the cancer tries to grow through a different “pathway”.  He focuses quite a bit on BRCA mutations, and here’s the deal:
1) I’m probably alive because of the BRCA mutation I have.  It makes cancers more sensitive to chemo, especially “platinum based” chemos (e.g., “Oxaliplatin”.  A chemo I have been on).  He recommended that I try Cisplatin (another chemo typically used for ovarian or breast cancer), since my body has never seen it.
2) Having this BRCA mutation opens up more trials for me.
3) There is some research that BRCA mutations are more sensitive to immunotherapy.
4) A PARP inhibitor (like Lynparza/that bitch Lynn) is still on the table, either alone or with immunotherapy.  He explained to me why I felt so miserable on Lyn – and it makes total sense.  So, I not only have the BRCA mutation in my tumors; I also have it in my own genes.  BRCA is a gene repair mechanism – so when it is mutated, it can’t repair damaged genes/DNA.  PARPs are also a gene repair mechanism.  So, IDEALLY – if your tumor has a BRCA mutation but your body’s genes DON’T, you could get great results from a PARP inhibitor with few side effects.  In my case, however, since my BRCA is mutated everywhere, my WHOLE BODY couldn’t repair damaged genes/DNA…and so I felt like garbage for two months.  He said it would have been worth it to stay on the Lynparza, but to lower the dose.  In the future, at least we know how this type of med would affect me…so I’d stop working for awhile, etc., knowing that I may feel craptastic.

Also with tumor mutations – they come and go, and you can predict which drugs will or will not work based on some of these mutations.  So Dr. Kasi does frequent liquid biopsies (e.g., blood draws) to check on mutations and help direct treatment.

The coolest thing we discussed, by far, was the fact that he could potentially get a tumor sample from me, grow it in his lab, and try a bunch of different drugs/combos on it in the laboratory.  This would 1) help his research, and 2) directly benefit ME, because we wouldn’t have to “just try” drugs for a couple of months to see if they would work.  We would already have an idea of where to start when treatment needs to be changed.

Also, in the past 4 years, this guy has done research on a bunch of different compounds and how they affect colon cancer specifically.  For example, vitamins, foods, etc.  He recommended that I take/eat baby aspirin, vitamin D, fish oil, garlic, turmeric, and caffeine.  All of these things help people with colon cancer live longer.

All of these “options” are to be looked at like “bridges” – ways to get from here to the next trial.  Or to the next treatment.  Or to the next huge medical breakthrough.  Exciting times, guys.

I still have a scan on Friday…so, scanxiety.  But I feel more ready to tackle whatever comes my way.

And, besides seeing this doctor in Florida, Tim and I got to spend an hour on the beach on our anniversary.  And I got to spend two whole days with AJ.  Got to meet her hubs, she met Tim…it was good for the soul.  She is currently having an adventure entirely different from mine, but that’s her story to share…and I pray that she goes home feeling as light as I came home feeling today.

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Numbers

437 = the number of mouth sores I had a month ago.  (Exaggeration.  I have no idea how many.  I just know that the number SUCKED.)

2 = the number of mouth sores I had two weeks ago.

0 = the number of mouth sores I currently have (2 days post-treatment).  Hallelujah.  I don’t know what’s working, but I’m going to continue ALLLLL of it.  I’ve been swishing carafate (a prescription liquid for stomach ulcers) proactively and I found a glucosamine-based powder that I mix with water and swish and drink.  Also, we knocked one of my chemos down to 80%.  And I’ve been sucking on ice during the two-hour infusion of the “hard” chemo.

40 = the increase of cancer markers in my blood from January to June.  Not cool.

1 = cancer marker DECREASE!  One point, but I’ll take it.  It’s the first in the right direction in the last 6 months.

4 = the age of Alexander as of today.  I could write a zillion things about this, but you guys get it.  We didn’t know if I’d see his first birthday, and here we are.  Alexander is smart and chatty, but definitely on his own terms.  He doesn’t like to participate in front of groups of people and doesn’t like to be singled out.  He is silly and adventurous.  He would much rather play than eat dinner.  He has two volumes:  loud, or silent.  He tries to delay bed time and sings nonsense songs in the car.  He still loves his taggies.  And he saves my life every day.

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Infinity = the measure of my gratefulness for and contentment with today.

 

 

Wrecked

Ugghhhh, you guys.  My digestive track is WRECKED.  Literally, everything from my lips to my butt is irritated in a magnificent way.  I have mouth sores, my throat is raw, I have indigestion, I’m burp-city-limits, and I’m constipated.

I’m only saying so because I know you guys will put in some special prayers for my gut.  Please and thanks.

I’ve cut out the coffee, been sipping on chamomile and honey, taking Tums and stool softener, adding flax to EVERYTHING, and popping some slippery elm capsules.  Every day has gotten a little better, but still, guys.  Wrecked.

I’m drinking smoothies (with copious amounts of flax oil), sucking on ice, and even eating ice cream (yes, even sugar at this point).  Soft fruits are tolerable, too.  And things like oatmeal and chia seed pudding.  Thank God I’m not on Oxaliplatin, or I’d have cold sensitivity to boot…and cold things are getting me through right now (she says as she eats ice cream AND a popsicle).

Everything else hurts to chew, swallow, and digest.

I’m thinking that Lynn (she’s a bitch) messed up my digestive tract, and chemo on Monday decidedly ripped off whatever was left of my mucosal lining.

Funny thing, here.  My energy is OK.  WAAAAYYYY better than it was.  But the whole digestive problem is, well, a problem.

I’ve been a patient patient, but I’m calling my doc on Monday.  Because this girl likes (and needs) to eat.

Family

I’m sitting here, post chemo-disconnect, pondering the last couple of weeks.  Two weeks ago, I felt like crap – thanks to Lynparza – and was a ball of anxiety with the thought of yet another treatment decision.  One week ago, I was laughing and playing and enjoying some precious moments with my family and friends in the Outer Banks.  And today, I wrapped up another round of chemo.  It was neither great nor horrible.

Life is weird.

I’ve been thinking a lot about family lately.  I’ve never had a huge family, and yet I’ve always longed for one.  I sometimes get jealous of big families, of my friends having babies that I can never have, of people getting together for extended-family parties and vacations and fun.

But honestly, I have no reason to feel that way.  This sweet little family I have is perfectly imperfect.

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And my extended family – not necessarily always blood-related – is more than I could have ever asked for.  Last week, my heart and mind and body was rejuvinated by conversations with good friends, laughter, yoga, sunshine, and yummy food.  What would I ever do without all of you??  And I love love love that we are raising our babies together.  And coming home from vacation to an entourage of help from my mom and others – gah.  My heart is full.

Also, my “family” has already filled up chemo buddy slots through August.  So, guys – thanks.  Thanks for lightening up this load I carry.  I’ve said it before, and I will say it a million times more – I would be nothing without you.

Back to the Drawing Board

 

I’m so due for a blog post.  If you see me on a regular basis, you know that I have been somewhat of a disaster.  Lynn (Lynparza) has been a bitch.  I have felt fatigue that I haven’t felt in ages – like having-to-sit-down-to-dry-my-hair-in-the-bathroom tired.  I’d be lying if I said it wasn’t affecting my quality of life.  On top of the fatigue, I have been having the strangest aches and pains and digestive discomfort and, in general, I’ve been miserable for weeks.  I requested blood work a couple weeks ago, which showed a rise in my cancer markers; this, in turn led to a PET scan.

I haven’t had a PET scan in probably a year and a half, at least.  We’ve been relying on CT scans for awhile now.  So, this PET scan showed new things – nodules in my lungs (which we knew about), several “active” lymph nodes, and possibly a couple bones in my spine (although my doctor isn’t sure about these).  So, back to the drawing board.  IV chemo, here we come.

Here’s the thing.  I knew I would have to go back.  Clearly, this situation is not ideal, nor is it a picnic, but at least I know WHEN I’m going to feel tired and crappy, and I can work my life around that.  Also, this chemo has worked every time in the past, so we just pray that it works again.

My mind is in a better place than it was a week ago.  Sometimes it is a relief just to have a plan and feel some kind of control.  For awhile there, I felt like everything was spiraling completely out of my reins and I had absolutely no energy to manage it all.  Moving forward, though.

We are headed to the Outer Banks on Saturday with my best girls from high school and our families.  10 kids, 9 adults (thanks Janine, for tipping the scale!).  It is going to be NUTS but I am so looking forward to it.  We planned this a year ago, knowing full well that I might not even be around for it (although no one said it out loud!).  But here I am, and I’m freakin’ going to enjoy the sand and the sun and the kids and the company and I am going to let nature and love work some healing magic on my body, mind and soul.  And I already know that it is going to clear out all of the stress and junk that has been festering inside me so I am ready to accept that chemo and let it work its magic.

Senokot, Miralax, and DulcoEase

mmm-kay.

So I started taking Lynparza (Lynn) 10 days ago.  Days 1, 2, 3 – fine.  Days 4, 5, 6 – not so fine.  Every. side. effect. in. the. book.  Including nausea, headache, chills, body aches, extreme fatgiue, constipation.  Mom even came down on Tuesday with food and to play with Xander (Tim was away) so I could sleep.  On Wednesday, I went for blood work and a chest x-ray to make sure there were no weird infections going on, and my nurse coordinator called and said, “Maria, your blood work is better than mine.”  Since then, I have been fine again.  Well, maybe a little tired.  But also, I am always a little tired.  Oh yeah, and my digestion is all messed up.

Like, today I took Senokot, Miralax, and DulcoEase.

Um. I have colon cancer, and I have NEVER had a problem with my colon (says no person ever).

I have noticed that Lynn gives me a little bit of nausea, so I’ve been taking Zofran (anti-nausea), which causes constipation.  I only took one yesterday, and none today, just to see if that helps.  I’m not COMPLETELY movement-less, but my belly feels crampy and bloated.  And of course, then I worry about the bloating and crampiness being the cancer growing (when the most likely scenario is compacted stool).

Ah yes.  Blogs about poop.

Also, I have a scan and more blood work this Thursday.  I am not overly freaked out about this scan, since my last scan was less than two months ago.  We already know that the CEA tumor markers were rising…so if there is something new or a little bigger, I have to be OK with that.

But what if the scan is BETTER?  Like, what if this pill does some crazy wonderful things?  I mean, now that I’m feeling OK, I feel like I can write something like that. Those first few days – I was really REALLY worried that I was going to feel like crap for months and I was already making the decision in my head to go back to chemo.  At least with chemo I feel crappy for 4 days, but get 10 good ones.  But now I feel like at least we have a shot!

Oh yeah, I also had an infected ingrown toenail clipped out on Tuesday.  yeeouch.  No pain meds, ya’ll, ’cause there could be drug interactions.

Life at its finest, guys.  I’ll work on the poop.

 

A very fine specimen, indeed

 

 

About two weeks ago, Tim and I drove down to NIH in Bethesda, Maryland to discuss a clinical trial (I will refer to this as CT-1, because it may get confusing from here on out).  I kind of already knew I did not want to participate in CT-1, but we went anyway.  I figured we could get to know the place, meet some people, and have them meet ME.  You know, just in case something perfect for me crops up in the future.  Then they have a face to a name, you know?

It was an interesting experience.  We had to go through security, and Tim had to leave his pocket knife outside of the facility in a hole in the ground.  They went through the bags of toys that I keep in my car for when I do evaluations.  So that was cool.  Once we got inside, I was shuffled around from one room to the next, from one interview to the next, ALL DAY.  Everyone had an accent, and the phlebotomist had the most epic ear hair I have ever seen.  People were nice, and I felt like a very fine specimen, indeed.

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Long story short, I qualified for CT-1, but the team there decided it was not my best choice (since, thank God, I am blessed with choices). That trial is working on figuring out the doses of its drugs, and they are currently at “dose level 2”, which they don’t think would do the trick for me.  I thank them for their honesty.

But, they DID put me in touch with a nice Irish doctor to discuss other possible trials (CT-2 and CT-3 [I’m starting to feel like I’m describing Star Wars characters]).  She called us as we were driving home to discuss CT-2 and CT-3.

I liked CT-2.  It involved a single-agent PARP inhibitor, which Dr. Joshi at Hershey was working on getting for me, anyway.  They already have the dosing. They already know it works on BRCA mutants who have breast or ovarian cancer. They just want to see if it works on other BRCA mutants.  Like me.  So, I kind of decided to do the trial.

Then I got the call from Hershey saying my PARP inhibitor had not only been approved…it was a $0 copay (we were expecting thousands $$$$$$$$$).  So I had a decision to make.  CT-2 or off-label PARP inhibitor from Joshi?  I had so many pros/cons lists going on in my head and on paper.  I discussed it with friends and family.  I prayed. And I still didn’t know which was best.  I called and emailed NIH and asked every possible question about the trial.  Finally, here was their response:  “If you have the PARP inhibitor approved and ready to go with your doctor, do that.  In that case, you won’t have to wait 4 weeks to start our drug.  Plus, the off-label PARP inhibitor is already FDA approved.”

So I took my PARP inhibitor tonight.  It’s called Olaparib or Lynparza.  I feel like we should call her Lynn.  So, my first dose of Lynn is down.  So far so good!  I’m not sure what I’m expecting – immediate nausea?  pain?  exhaustion?  fluorescent beams shooting out of my eyes and ears?

The expected side-effects are the usual trouble-makers:  low blood counts, fatigue, nausea.  1% of people get leukemia (but we will constantly be checking my bloodwork, guys).  I did read up on this drug, and people seem to tolerate it well.  Also, it is not really a chemo…so regardless of whether it works or not, I will have a break from poison.  I’m also pretty stoked that it is a pill, so no infusions and fewer trips to Hershey. I am feeling pretty good about the decision, and I have learned a long time ago to listen to my gut.  My gut feels OK about this.  Do your thing, Lynn; do your thaaannngg.

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