Update for December 24, 2016

I want to sincerely thank you all for the texts/calls/cards/fb messages/etc. Please know that I feel your love each time you reach out. You have made my day many times over these last few weeks with all the loving and praying and caring and giving. I’m a blessed girl to have friends and family like you in my life and every gesture of love from you feeds my soul.

I do not like to go this long without posting an update. I kept waiting for more definitive information to share, but if I wait until I have all the answers, I will never update, so I decided to try to concisely catch you up today. (Keep in mind though, concise is not one of my gifts. Words are. Lots and lots of words.) 🙂

Side effects from the oral meds started going to a new level right before Thanksgiving and the mayhem continued into this week, despite the fact that I haven’t taken any of the medication in almost two weeks.

Those of you who have walked this road with me from the beginning won’t be surprised to hear many of the symptoms I experienced are classified as rare side effects. I know, you’re shocked. When trying to determine what to expect when taking a new medication, I should know by now to just skip over to the last page where it lists “rare and unusual side effects”. One thing for sure, I teach my doctors something new with every visit.

The last few weeks have been full of scans, tests, labs, multiple doctor visits, and a short hospital stay. With all of the diagnostic assessment I’ve received, one would think I would have some very concrete results to share, but unfortunately, that is not the case.

Here’s what we do know, the oral medication, although it wreaked havoc, did what we hoped it would do and the two lymph nodes in my chest wall are not showing any metabolic activity. (The cancer is no longer there.)

While we were grateful to hear that, we were disheartened (sort of) to learn that I cannot continue taking those meds, as I obviously did not tolerate the toxicity very well. (It made me miserable with all of the debilitating side effects.)

Many people are able to stay on this medication for a couple of years or more, with no issues. I was hoping to be one of those people so I would not have to so quickly jump to another treatment. Can’t say I’m going to miss it, but I would have liked to have been able to stay on it awhile longer (without the side effects).

Recent assessment has shown a few areas of concern that have popped up here and there, but there is no consistency among the MRI, CAT, and PET scans and labs. Although several doctors have studied each test, they cannot say with any certainty exactly what is going on, especially when they consider all of the odd side effects I’ve experienced with the medication.

Some of those symptoms caused a short hospital stay this week (NOT where I wanted to spend my time right before Christmas), but I am home now and feeling much better. Actually, yesterday and so far today, I’ve felt better than I have in several weeks. Oh how I treasure these good days. All I want for Christmas is lots more of these good days!

Although the cancer is no longer in my chest wall, I am not at a place where it is advisable to stop treatment, so we are moving forward with an immunotherapy clinical trial. This is the same trial that I wanted to participate in back in August when I went to Boston, but was unable to at that time because all of the slots were full.

We have since learned that clinical trial is also available in Dallas. The trial in Boston is for the treatment of inflammatory breast cancer. The trial in Dallas is for the treatment of triple negative breast cancer. I’m one in a million and have both, so I qualify for the study in Dallas as well. Same drug. Same dosage. Closer to home. I’ll take it!

Medical records have been sent to the oncologist overseeing the trial and we should find out next week when I get to meet with her. Although I do qualify for the trial, she will have to decide if it will be beneficial for me, and my insurance has to decide if they’ll allow me to participate. Hopefully all of those details will be finalized at my first appointment and we can quickly move forward.

Immunotherapy is not the same as chemotherapy. Simply put, chemotherapy treats cancer by killing both good and bad cells. Immunotherapy treats cancer by ramping up the immune system and allowing the body to fight  cancer on its own. It is not without side effects, but they are fewer and not as severe.

Just since August, when I first learned of Keytruda (the immunotherapy drug that is being tested in the clinical trial), it has been FDA approved for the treatment of seven different cancers. That is remarkable!

Many of you often ask me what I need you to pray for specifically. I have an answer for that. Our immediate request is that I can get in to see the oncologist overseeing the trial quickly, all of the decisions that have to be made by various entities to participate in the trial will be made in my favor, and I will be able to start this very promising regimen soon.

It is so hard for me not to scratch and claw trying to find the right treatment or the right doctor to forever rid me of this disease. I scour the internet and question every doctor I see in search of information that will lead to a cure. I find myself thinking if I just look hard enough, research long enough, travel far enough, I can find the magic treatment that will take this all away.

Then I remember,

“But now, Lord, what do I look for? My hope is in you.” (Psalm 39:7)

On the eve of this most sacred of holidays, as we celebrate the birth of the one who came to live among us, only so He could die for us, we would do well to remember that our only hope is in Christ alone.

It doesn’t matter what type of situation is heavy on your heart right now, you can only do so much in your own strength to fix it. 

You can’t work your way to peace and resolution. If it were that easy, I’d be thinking about something other than getting into that clinical trial on this Christmas Eve.

Busyness gives us false security. We erroneously believe that the more we do, the more control we have. Life doesn’t work that way. God doesn’t work that way.

Ultimately, whether or not we choose to believe and accept it, the answer to all the heartaches of life is in the hands of the One who controls it all.

When and why did we start believing that if only we try more, work more, do more, we can fix what is broken in our lives?

“Some trust in chariots and some in horses, but we trust in the name of the Lord our God.” (Psalm 20:7)

It’s not about finding the right doctor, or the right treatment. Those chariots and horses alone do not have the power to heal, redeem, and restore. I have to remind myself (sometimes several times a day) that my trust is not in what man can do, it is what God can do.

This season, please join me as I try to do less and trust more.

I wish I could hug each of you today and thank you in person for the prayers and support you’ve given our family over the last few months. I so much want you to know that each of you have deeply touched our hearts by your encouragement and love.

Wishing you all a wonderful Christmas celebrating the birth of our Savior; the One who brings us hope and sets our world right. Slow down and rest in His peace today friends.

Love,

Tina