Over the last week I have head my mind say, "I need a break, I just need a break." And in the next instant I panicked because I knew something was about to shift.
Yesterday, things shifted. And I get my break. Not what I had in mind.
As Shawn and I were given the results of my recent CT scan I felt calm and I felt a little shake-my- head / incredulous/ "serious God???" crazy-giggle burble inside me... God, you heard my heart's cry for a break and here it is. That tiniest giggle lasted about a millisecond of surprise and was tinged with a moment of [heart sinking in chest]. It wasn't great news.
The CT showed that the current chemo + trial drug have not worked as hoped. My oncologist has presented us with his top three options for treatment (option #1 chemo, option #2 chemo, option #3 a different trial). We trust him. I have prayed, and am praying fervently in this day, for God to give my doctor wisdom, to thank God for my doctor's excellence and experience and knowledge and expertise, and I ask God to give my doctor clear direction in my treatment plan. Also, the #1 option requires that my oncologist apply to the government to please fund the treatment. (This is a treatment used as standard in other cancers and it is used for bladder cancer but is not a "standard" treatment protocol for bladder cancer and so not covered...because bladder cancer is rare and not many people get it (praise God!) it is not worth it financially for drug companies to pay the millions of dollars it costs to complete a trial. Lots of people get lung cancer, so there is money in lung cancer drugs, so drug companies fund research in lung cancer... ah, money does make the world go 'round). Hoops to jump through and pray through.
My oncologist used the word "option" several times and the phrase "several options" and "I felt that you would like to have options" and he was spot on. I have often commented, throughout my adult life, that I like to "keep my options open". My oncologist knowing me so well after only 3 or 4 visits was just exactly the confirmation I needed that this is the right guy for the job, and added to my peace.
I also like that my oncologist isn't waiting around to see if it works. He sees that the current plan isn't the right plan and so we're moving to something else. I like that he is proactive. I like that he is researching. I like that he has a plan B he is keeping in his back pocket. I like the way he thinks and acts on my behalf. That is awesome! "...because you are young and fit..." The "fit" cracks me up, "Um, doc, you do know that I've been laying around on my butt for the better part of a year now, hey?" But 'healthy' isn't a word we use with cancer and hospital visits I suppose. It makes me chuckle every time he says it! Bad news and a chuckle in the same visit... this is such a roller coaster.
Shawn was caught off guard, "But you haven't gotten worse, how is this possible?" My poor, so-very-dear-to-me husband, this poor guy, this stalwart supporter. Please, keep holding him in your prayers. I can't imagine how impossible it is for him to watch his beloved wife go through this and this and more and then some more. His heart is broken for me. He just wants to make it better. He prays so fervently. He hopes so hard. He works so diligently. He tries more and harder and deeper than anyone I know. He is a good good good man. He really is. Hold him in you heart with me? Lord, bless Shawn's day. Please, Lord, bless Shawn's day. I love that man truly, madly, deeply. Thank you, Lord, for Shawn. He is such a good man.
And so, I get a break until next week. Last night, after the crappy job of telling my parents and sisters the update, I actually had a lightness of heart that I haven't had in weeks. I knew, in my gut, that the current chemo+trial was not going to be the winner for me. And so, being taken off of it just feels right. I have hope in the next treatment. I trust the Lord God, maker of Heaven and Earth: He has a plan and I am in it. Ultimately, if nothing works, I will have perfect peace and rest and health in Heaven and I will one day see my loved ones there. A scary and peace-giving thought all at the same time... no one wants to die at 41 with an adoring family and a great life they are happy to be living!!! I do not want to die. At all. Until I am 100 and enjoyed my 100th birthday cake and a good nap in my chair and then will die peacefully in my sleep.
But I am not dying today. Nope. Today I am going shopping. Christmas is coming!
UPDATE: Thursday the phone call came that I have been approved for option #1!!! We prayed that God would clearly open the door (of which option) would be His choice and that door flung open. My oncologist had warned us that the government could say no and that we could be denied the chemo based on budget. The trial nurse seemed pretty happy that we got approval so quickly.
Please pray that the cancer in my lungs will stop. shrink. be gone completely. Please pray that the 'possibly something' on my liver is gone completely. Please continue to pray for my bladder health.
We also really strongly need your prayers for coping and peace and joy in this Christmas season and smiles and happy moments with our kids and some normal. Please, God, bring us normal in each day.
And please, be very careful with what you say about any of this in front of your kids, so that we can continue to protect our kids as best we can and as is age appropriate within our family values and as to what/how Shawn and I share information with the kids. This is just such an insane reality and we are all worn and weary and stretched thin emotionally and just plain done about cancer. Please pray that God will keep soft their hearts.
Thank you for your continued support. I have tears right now just thinking of your pray-ers, and the anonymous gifts that show up at our door, and the meals and the groceries at exactly the right time. We are so blessed and you are just amazing and I just don't know how we could maintain any sanity without God and without the tangible help that you bring. My heart is full. And sick and tired of having cancer and completely ready to celebrate a miracle. All at the same time. [weak smile]
The last two days have been very busy and full with no naps. Today I am very weary and yet have to go traipse around town in search of a B12 shot (apparently there is a shortage and no pharmacy has any???) that I must have today or else I cannot have chemo next week. Ah, another blip in the journey. Going to phone the Cancer Agency pharmacy and see what they've got. God will provide.
Thank you for loving us in all this messiness. I am so grateful. Today I'm just also really really tired.
Writing birthday invites for Miranda's classmates. This time last year I honestly didn't know if I would get another birthday with the kids. I wouldn't even allow myself to think about this year's birthdays until the day before. It even feels like I am "tempting fate" to think "I got another birthday with each of them" when her birthday is still over a week away... but I feel hopeful that I will get this birthday with my daughter. Please realize what a big deal this is to me. I don't look ahead. I have grown to assume that there will be side tracks and blips and dips and side effects that will come between this moment and my plans for even the very near future. It's that loss of innocence that I have spoken of before. But today, as I write these cards, I feel anticipation of spending 12th birthday time with my girl. And anticipation is a rare commodity to me these days, for whatever reason and for a whole bunch of reasons. Once bit, twice shy, right?
