Cancer · caregiver · love · Metastatic Cancer · Travel · Trent

Operation Pura Vida

I’ve been trying to write this blog for about a month. I haven’t figured out if I haven’t had any interest or if I’ve been too busy or I just didn’t have anything to say.  I’ve definitely had some trouble getting my thoughts in order enough to write, but I do feel a certain responsibility to myself, to Trent and to you to somewhat maintain this blog.

I won’t bore you with the details of the past few months, I’ll just give you a little synopsis.  After spending way too much time agonizing over the decision to continue to work or not, in February we finally decided that it was best for everyone if I stay home to help with everything.  Mom was spent, Trent’s health needed more attention from me, Lily needed me to be more available and the boys needed their mama, and EVERYBODY needed therapy!  It’s definitely been good for everyone I think and I’ve had a chance to take care of some much needed check-ups and such for those who’ve needed them.  Both Gavin and Trent’s mouths needed some serious attention and both of them ended up having oral surgery the same week in April…OH NURSEMAID!  Recovery went much better for Gavin than for Trent, as you can imagine.  Trent just doesn’t heal anywhere near as quickly as you or I do.  It’s very frustrating for him, but he just tries everyday to keep moving forward.

Sabrinna has come home for a time.  We are so glad to have her back, in spite of the
adjustment period we are currently experiencing.  She is registered for summer classes at ACC that begin at the end of this month. Lily is still fighting very hard to hang on to Lily. We don’t pretend to think that this experience is easy for the kids, no matter how easy-breezy they may come across.  For those of you who see the kids and have relationships with them thank you so much for your support of them regardless of the choices they make. It takes a village.

Gavin and Coley are trucking along.  They keep us moving…all day long. 🙂 Gavin has had some questions lately about why his daddy is tired so much and can’t put him to bed sometimes.  He and I laid in his bed the other night and talked quietly about what it means when someone has an illness.  He asked me if his daddy was sick because he and his brother were bad boys sometimes.  No, honey.  Never that.

Mom has been able to spend more time doing the things that she enjoyed before we moved in, which puts my heart at ease.  We hate the way that we have changed her life, but we are so thankful for her love and support. I hate to think about traveling this rocky-ass road without her.

I’ve filed for long-term disability, which is slow-going.  Manor ISD provided me with 30 days of catastrophic leave pay to help, but most of that went days that I had already missed – as I was out of leave in February.  How we’re making it?  Jesus, SSI Administration and you.  Thank God my landlord is my mother.

I’ve been able to make myself more of a priority.  I’ve lost 25lbs and I feel so much better about myself in this world.  Yoga has come back into my life for good.  I’m a kinesthetic learner and what better way for me to learn about myself than through self-inflicted near torture ;).  I’m eating so much better, cleaner…greener.  I’m not feeling so sad these days. Thank you, prayer.  Thank you, therapy.  Thank you, Lexapro.  I had so many hang-ups about antidepressants, but when on my way to work one morning I randomly gave serious thought to driving my car into a tree I knew that talking wasn’t going to be enough.  If you’re struggling please make yourself and your well-being a priority.  Let a loved one, or friend, or parent, or pastor, or teacher, or bus-driver, or…well, you get it, let someone know. Please.  You’re worth it.  So am I.

Thursday

Trent.  He had his customary CT scan one week ago and the plan was for him to see Dr. Goodgame two weeks later for the results.  We were hoping to have the same results that we had with the last scan, shrinkage.  Trent had an appointment with Dr. Key, his psychiatrist, who is housed in the same office as Dr. Goodgame so the good doctor was aware that Trent was going to be in the office and scheduled an impromptu appointment for him – very unusual.  Trent called me to let me know what was going on and I asked that we be on speakerphone for the appointment (I had a feeling, as did Trent), but that didn’t go well.  What Dr. Goodgame proceeded to tell my husband was that the large tumor appeared to be stable but the smaller metastases that speckle all of Trent’s lungs and range in size from a little less than one centimeter to around three/four centimeters were growing. Near the beginning of all of this when we discussed Trent starting Votrient we were told that the target-therapy would work until it didn’t.  And now it doesn’t. Trent had been experiencing more pain than he’s let on, in association with the tumors. As a result of the pain he is on a daily dose of morphine time-released capsules. He said that it helps a lot so we’ll take it.  Anything that makes him feel more like himself is welcomed.  He doesn’t have any difficulty breathing -that I know of- but he does have a cough that he contributes to morning congestion.  I hope he’s right.  He doesn’t tire too quickly but if we’ve had a full day he will be out for the following day, unable to do much more than nap and watch Pawn Stars. Between still being in pragmatic-Mama mode and my tendency to have delayed reactions to most things I don’t feel much about the growth just yet. I think it’s because I see* (*stalk) him everyday (checking for breath while he sleeps, you know, the usual), I have a PhD in Trent D. Gibson at this point and I knew. I knew things were progressing and I hate that I was able to be there when they told him. I know stronger feelings are coming. Trent’s are already here and they hit him very hard.  It’s incredibly heartbreaking to see your soulmate the ways that I have seen mine, but I wouldn’t be anywhere else.  We’ve talked to the girls and they are understandably upset.  They lost their great-grandmother earlier this year and now their aunt is in ICU battling congestive heart failure.  They’ve seen better days. Please keep them in your thoughts and prayers as they continue to fight the darkside.

Our choices. Gemzar and Taxotere – more chemotherapy, at the infusion center, not in hospital, three weeks on, one week off, terrible, black nails. Eribulin – chemotherapy, usually used in breast cancer, one week on one week off, not in hospital, sucks as well.  Clinical trials – mixed bag, none in Austin, would have to travel, may not do much, might do something. Ending treatment all together is also an option.  Sarcomas are notoriously resistant to chemotherapy.  If I sound anti-chemo, it’s because I am. If Trent’s diagnosis/staging were different and I hadn’t lived through the past year of my life fighting with the disease and the medicine, both of them trying to steal my husband, I would probably feel differently. But I have and I don’t. We have until next Thursday to make a decision.

The good news!  Because we have some. We’ve struggled for awhile with whether or not to share this with everyone, but in light of our present situation we hope that you’ll be happy for us, and it doesn’t matter to us if you’re not #NOTSORRY. We took some of our tax return money and booked the honeymoon we never had a chance to take. Costa. Rica. We rented a little house via Airbnb and we plan on doing things our way.  Rest, relaxation, cooking and us. Simple. We have plans to take everyone to LegoLand this summer thanks to a great organization called Great Community. But this trip is for us. They have a saying in Costa Rica. Pura Vida, simple English translation is “pure life” but it truly means so much more to those who have experienced the country.

Pura vida! Means that no matter what your current situation is, life for someone else can always be less fortunate than your own. So you need to consider that maybe…just maybe, your situation isn’t all that bad and that no matter how little or how much you have in life, we are all here together and life is short…so start living it “pura vida style.”

This is our tenth year together and I don’t need to tell you that we have been through so much as husband and wife.  We deserve to celebrate our relationship and each other.  Is it a financial hardship for us to pay for such a trip? Absolutely. That’s why we’ve had so much apprehension about sharing this with those of you who have participated in supporting us emotionally and financially.  We would hate for you to think that we haven’t needed the support or have been poor stewards. Some months you and faith are the only ways GP7 has made it.  We have chosen to make our love and the work we have put into our relationship a priority and something to celebrate. Trent has never been out of the country and what better time. Yes, it’s a little bucket-listy. We hope you understand. We leave for Manuel Antonio two weeks from today – for eight days (June 4 – 13) and we are treating it like a real honeymoon…weave, wax and all. Two weeks. We just have to make it two weeks.

Mom will be caring for the little guys while we are away, so if you want to lend a hand let us know what you can do.  A grocery run, a playdate, a trip to the movies or park, a walk around the block, wash a load of boy laundry, help Lily with the dishes. All of these things are more than welcomed.  The big girls will be here for most of the week, too.  Come hang out.

Well, that about sums it up.  Hopefully this has given a little context to some of Trent’s more recent posts on Facebook.  I’m hoping that he’ll be able to blog himself sometime soon because no one can explain how he’s feeling but him and there is a whole lot of grace and wisdom in that man of mine.

***UPDATE*** Here’s Trent’s latest post from Facebook:  So, the growth inhibiting drug that I am taking now is no longer working. Even though it seemed to provide the 1st time ever of decreased size in tumors since diagnosis. Now oncologist is recommending an IV chemo or a trial drug. Also to go back to MD Anderson. IDK what the right choice is. I am in a state of mourning because I was really thinking about a longer future since my last scan result of shrinkage and now it is progressing more than others ever has been. I haven’t changed any thing as far as life style change. I’m not the source of blame. There never has been a source of blame. The cancer has never had a consistent pattern that could be used for any kind of conclusions let alone any kind of personal choices or lifestyle habits etc. I worry about these things so that I can ensure I am not contributing to the disease and its progression.
So, after feeling really emotionally for almost 1.5 years I had a way to think about other things and when I did think about the cancer and my short life expectancy I was at ease and less worried. Now, though, I am probably more concerned than I ever have been. I feel guilty and foolish for letting my guard down. I know that has little influence on it but that’s how it feels. Right now. But I also know that at this rate I potentially only have a few years at best. Ugh!!!!!
So, I feel highly led to move to Colorado and pursue cannabinoid therapy legally. I don’t want to take any more chemicals. I want to live as free as possible. The federal government need to let cannabis to be a schedule 2 drug so I and solo many other people can live and be cured with a non-sythetic approach.
Thanks for reading if you made it this far. This is what makes my life heavy right now…on top of all the normal stuff.
God bless. T

Thank you to everyone who spearheaded the garage sale event (Jennifer & Tony, Allicen & Paul, Adrianne & Ice, Betty & Mike, Erin & Sebastian and Marisol & Eric for the use of their home to keep a whole bunch of stuff).  It was great and we can call this month “We Made It May” because of you.  All of you who continually bless us, Amanda & Family, Chris & Family, Steven & Co., Andrea & Family, Dee…Thank you.  All of you who pray, visit, text and think about us…Thank you. Do good. Don’t quit.

xoxo,

A

 

4 thoughts on “Operation Pura Vida

  1. I’m so happy to hear that you and Trent are taking time to celebrate the “us”. Much love, I admire your spirit and willingness to share. ❤

    Liked by 1 person

  2. I’m always checking to get the latest scoop & when I dont, you post…I gotta do better, teeheehee!!! I’m elated that you two are taking time for you…way to go for that…I’m jealous! That weight lose tho…sexy pics only for that update 😉, teeheehee. All jokes aside, your entire family is in my prayers & enjoy life, one day at a time! Continue to be Great A!!!

    Like

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