wednesday, june 12, 2013.
Shortly after being canned by Doctor One, I request a copy of my medical file from SCCA and submit my appeal for a new oncologist. I find numerous glaring errors in my file, and discover I am supposed to have had an MRI after my last ultrasound shows a particularly concerning issue. No one orders the test. No one even bothers to tell me. It takes them weeks to inform me they will not give me a new doctor, but Doctor One says he is willing to take me back if I agree to start chemo (worded in such a way so as to indicate that returning to his care would involve no questions, no conversations, and no further tests... not even the previously recommended MRI).
I am not feeling nearly as gracious as he. I am shocked. I am livid! I sob. I fight the urge to numb out. I let my loving husband comfort me. Our wise and compassionate midwife comes over for a visit. We love her dearly and eagerly drink in deep all the life and hope her eyes offer before even a single word escapes her lips. She draws my blood to check my levels. She speaks life to us and leaves.
The Music Man and I pray and are again filled with the sense that no matter how it looks from the outside, we are following where God is leading us and we are where he wants us to be, for now. It makes no sense. It makes perfect sense. It sounds like utter nonsense. We look like fools.
No longer motivated by fear, I spend a solid work week hunting down a doctor who will satisfy three simple criteria: see me before July (this is a tall order, even though July is still three weeks away), accept my medical insurance (this is an even taller order), and treat me like person, not a disease. I find my Doctor Two, and after much effort, I schedule an appointment with him for Wednesday morning, and an MRI for Friday afternoon. We try to convince my insurance to preauthorize the MRI quickly to allow me to get the test before Wednesday's appointment, but are met with much resistance. Doctor Two starts his two week vacation just hours after I first meet him. Without Doctor Two, I cannot get Friday's MRI results. Without Friday's MRI results, we cannot make a decision with all the available information. The prospect of another couple weeks of waiting and wondering makes my stomach turn. A month ago I believe I was healed, but my test results are a roller coaster ride and the days are as years and my heart is weary and chemo starts to look and sound deliciously good.
My dear sister-in-law, who is wonderfully gifted at taking care of others, comes to spend Wednesday with Little Buddy, while The Music Man and I spend nearly eight hours at the hospital. Everyone we encounter is kind and compassionate -- it is a welcome surprise. Doctor Two is in emergency surgery when we arrive so we wander down the block for coffee. It is the closest thing we have had to a date in a year and eight months. We drink in the moment, nerves and all.
More than anything, I just want a decision to be made. Living in the in-between can be crazy-making, and I am ready to stop dwelling in this grey space. I have oft been accused of being all or nothing, black or white. Is that a good thing or a bad thing? We pray for a clear answer, for clear direction. We pray that somehow, we would have an answer today, before Doctor Two leaves town.
My acupuncturist, who was a medical doctor in China before become an acupuncturist there and now here, earlier informs me that in China they automatically treat GTD with two D&C's (this is the surgery in which a doctor empties a womb) back to back. They perform the surgeries roughly two weeks apart, and follow them up with multiple courses of boiled herbs (for lack of a better phrase to describe the stomach turning soup made of 12 wildly varying ingredients from grass to bark to mushrooms to roots to flowers -- the very concoction which I ingested every four hours around the clock, for several weeks). The soup is something akin to natural chemotherapy, if there is such a thing.
We try to discuss such options with Doctor One in early May before I am originally scheduled for chemo, but he is unwilling to even have a conversation about a second surgery, alternative therapies, or adjudicative therapies (therapies which support the chemotherapy, side by side). Doctor Two is much more open. He acknowledges there has only been a minute amount of research done in the US on the back to back approach, but admits the research suggests it could potentially be beneficial.
Although highly unorthodox, Doctor Two agrees to perform another surgery for us, if we want one. The morning's lab results are in and my levels are down dramatically (hCG 3997), which eliminates our sense of urgency. We decide to wait to make a final decision until after our MRI on Friday, but Nurse Nicole works her magic and manages to get us in for an MRI within the hour. We are back in the office before long, images in hand.
The MRI shows that the cancerous growth inside my womb, which we clearly saw with our own eyes in May, is no longer present. What bliss! But the test also shows a growth, about the size of a sugar cube, contained within the uterine wall. The doctor informs us a second surgery will be of no benefit, as the location of the cancer is such that it is not exposed and cannot be cut away from the muscle, nor can it be cut out from inside the muscle. I do not look at The Music Man. I do not pray. I do not think. I respond quickly: okay, chemo. While I resign myself, The Music Man repeatedly protests, attempting to ask questions and buy us more time... but I am done. Done with waiting it out. Done with impossible odds. Done with believing the unbelievable, at least for the time being.
Doctor Two gives us choices: when to start treatment and which drug to take. He isn't in a big hurry and doesn't suggest it is an emergency and I am foolishly putting my very life on the line by taking another week or so. It feels good. It feels like grace. I all but abandoned weaning Little Buddy after cancelling chemo a month prior, and although the foundation for weaning has been laid, I do need a little time. We schedule my first treatment in 10 days on the first day of Summer.
Apparently there are two drugs that are equally as effective for GTD. The drug Doctor One assigned would have been a daily 6am hospital visit for a low-dose injection, with more manageable symptoms but ultimately a greater exposure to chemo. We opt for the other drug: a single, higher dose injection each Friday. We can expect more severe side effects from the higher dose for the first few days after each treatment, but The Music Man will be home on the weekends, and I will receive a lower overall chemo exposure.
We cry no tears. We don't second-guess ourselves. We don't clamor for a way out. We are comforted that not only do we know the end of the story, but we now know the means by which we are to get there. The Lord has repeatedly encouraged us in the weeks prior that I was going to be fine and we couldn't make a wrong decision... "I've got you." I try to comfort myself that if we can't make a wrong decision, then choosing to go to chemo is just as right for us as choosing to wait has been. He's got us. I am relieved to surrender so easily after fighting so hard for months now, since that day in late February when I confess to The Music Man that something feels really wrong with my body, with our baby. I feel a huge sense of relief that we no longer have to make decisions or offer explanations or console upset loved ones. We can now simply ride the wave.
Our friends and family overwhelm us with love and support. They offer us encouragement, prayers. They shower us with baskets of homegrown organic produce, bouquets of fresh herbs, and buckets of farm fresh eggs. They watch Little Buddy while we are away at my many doctor appointments. They remind us of God's promises. We feel rich and marvel at experiencing such great joy and being so filled with gratitude in such a dark hour. We breathe deep and take in the moment, not knowing what the days ahead will hold.
God has given us that glorious gift of time: five-and-a-half amazing weeks between when we are forced to go to chemo and when we choose to go to chemo. That's five-and-a-half weeks of learning to pray without ceasing, learning to trust, learning to listen, learning to wait patiently, learning to hold possibilities and deep desires loosely in an open hand, learning to obey even when other people think we're crazy, and learning to follow where the Lord leads even when it's not where we'd necessarily choose to go.
Before leaving the house this morning, I sit on the couch in the sun in a very cranky mood and Psalm 18 pops into my head. I turn there to read, not knowing what it will say. I am barely there as I read. I am busy telling God, "yeah, yeah... you know what I really need right now? I need you to give me a verse like that verse you gave me that one time about rescuing me because you delight in me." I am referring to a verse God gave me years ago from 2 Samuel (20:19-20): "... but the Lord was my support. He brought me out into a spacious place; he rescued me because he delighted in me." I turn the page and keep on with Psalm 18 only to read:
He reached down from on high and took hold of me;
he drew me out of deep waters.
He rescued me from my powerful enemy, from my foes, who were too strong for me.
They confronted me in the day of my disaster,
but the Lord was my support.
He brought me out into a spacious place; he rescued me because he delighted in me.
As for God, his way is perfect;
the word of the Lord is flawless.
He is a shield for all who take refuge in him.
For who is God besides the Lord?
And who is the Rock except our God?
It is God who arms me with strength and makes my way perfect.
I discover my verse is found in two different passages: 2 Samuel and Psalms -- it's both. Perhaps our right answer can be found in two different places as well: both in waiting and in going. As for God, His way is perfect. He makes my way perfect...