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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20 thoughts on “Florida

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  1. God is soooo good! Options are amazing, my friend! I’m glad you’re not only feeling lighter, but also having some time to refeed your soul and marriage! Continued prayers for you!

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  2. Wow! Lots of medical stuff that makes so much sense. This doc is the real deal. So glad you went…and Tim too!!! Happy you are feeling lighter! Carry on girl and keep being amazing!

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  3. Wow just wow…lots of very good information. You were to see this doctor the way everything transpired . You are in my prayers and I hope with the docs help new treatments to try good things are to come. You have always loved an adventure…..you are so awesome my dear friend.

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  4. Awesome how things worked out. Praying for you and your friend AJ. Will you go see this doc again? Or will he run things thru your doc here? Wasnt sure if they played well together.

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  5. So grateful for forums like these so that you can share information to all the masses who are behind you! What amazing information! God does provide and send so those angels to give us what we need. Hugs and prayers of gratitude that you are feeling lighter and that there are some amazing possibilities ahead! Wah hoo!

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  6. Incredible news! So glad the stars aligned & you were able to meet with this new Dr. Glad you are feeling lighter & more hopeful! ❤️

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  7. Such great information! So glad you could see this doctor. It sounds like you have some very hopeful options! ❤️

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  8. The coolest thing is absolutely the coolest thing! That is fantastic and truly good, caring, focused doctors and scientist make amazing things happen! I am in awe of the good ones!! So happy to hear you have answers ❤ Love you and your spirit!!!! 🙂

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  9. My heart feels so full for you! Sounds like some amazing opportunities are out there for you. As always, thank you so much for sharing. PS, i love the eyeliner!

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