“The scan has shown that you have a new area of metastasis in the brain.”
These are the words I have dreaded from the very beginning. These are the words that were said to me last Wednesday. And I have seen that somehow the world does not stop turning. It continues to move on its axis, the sun still comes up when it is supposed to, little boys still giggle, and there are still moments of laughter and joy in my heart.
I have been doing poorly for the past couple of weeks. My appetite was minimal and my spine pain, both neck and low back, combined with a lack of energy, was keeping me mostly couch or bed bound. I had a scheduled appointment with the nurse practitioner on Tuesday, and we discussed several new strategies and several new drugs to address the problems. I had a renewed hope, though it was tenuous.
We were to leave for the beach the next day, Wednesday morning. However, by Wednesday morning I was having symptoms that I couldn’t control. I had begun vomitting repeatedly for no apparent reason. I was moderately constipated. I had a significant new abdominal pain. I began to worry about a bowel obstruction. The last thing I wanted was to get a few hours down the road to the beach and get in such straights that we were stuck with no good medical options. So I decided to call the doctor early Wednesday morning to see what they recommended.
My description was enough for them to ask me to come in to see them right away. I was keeping nothing down, including water. My last weight had been 104 pounds (I am naturally around 130) and we certainly didn’t want it to decrease any further.
After I arrived, they immediately began fluids and pain meds through my port. The doctor came in to check me and quickly determined that a bowel obstruction was not likely. However, she wanted to do some scans to be sure. I was under the impression the scans were to rule out obstruction. I would later understand she’d been hoping to rule out something else.
She told me that in addition to the normal scans of my abdomen, she planned to add in a CT scan of the head. She said it was probably nothing but she was just being her careful self; “being anal” to use her words. I knew enough to know this could be bad. But I didn’t figure there was a point in asking what she might be looking for when we would find out for sure what it showed within a few hours.
It was around 4:30 on Wednesday afternoon that the verdict was delivered. The head CT had revealed an area of metastasis in my lower brain: the cerebellum. It was one, rather small, rather discreet spot, measuring 19 mm across (which is less than one inch.)
She explained the new plan, her new recommendation. She recommended cyberknife. Cyberknife is not actually “cutting” at all. It is very local, targeted radiation done robotically with a high degree of accuracy. The Sarah Cannon folks have had their machine three years, so they are experienced, but many places do not offer this technology at all. I have been given a very high-tech, aggressive option for treatment, with significantly lowered risks than surgery because it is not invasive at all. It should, over about 8 weeks time, kill most if not all of the cancerous cells in my brain.
She went on to explain the plan would be to take care of this brain lesion with the cyberknife and then quickly move on to another clinical trial drug. In other words, address the brain issue but then we would be back in the same boat - hoping to find a trial drug that will control the growth of the cancer and hopefully keep it from spreading anywhere at all, including back in the brain.
She said that the CT of the abdomen showed mixed results again. Some spots in my liver were reduced, some had grown, and there were some new tumors. She didn’t recall any other new organs or body areas of metastasis.
There was a big “however.” CT scans of the head are not as accurate as an MRI. I would have to undergo an MRI of my head the next day to make sure that there were no other areas of metastasis; to make sure that there were no small spots that had gone undetected. This began the most pleading prayer over the next few hours – “Lord, let them not find anything else.”
I was admitted to the hospital to get the nausea (which was likely caused by the swelling around the brain lesions) under control and to get my bowels moving again. Thursday was to be full with MRI and cyberknife preliminary testing and appointments.
The MRI did reveal another area of metastasis, but only one more discreet area. I have two small spots, very close together, in my cerebellum. The rest of my brain was clear. I am still a candidate for cyberknife. Thank you, Lord.
For those that don’t know, the cerebellum is mostly in charge of posture, balance, and coordination. Thankfully, I have not noticed any deficits in these areas, with one exception. I have noticed some difficulty talking. I have no trouble retrieving words and knowing exactly what I want to say, but the formation of the words doesn’t alway happen as I expect. This is very mild, however, and most folks don’t even notice anything off with my speech. I only notice trouble occasionally.
I have been told it is safest for me not to drive, just because my reaction time may be slightly off. I’ve been told that a short trip to the grocery store, etc, is probably fine, but of course as a doctor they have to tell me no driving. I get that. I plan to avoid it at all costs when I can.
There are supposed to be no real side-effects nor long-term ill-effects of the cyberknife. Most people resume normal activity within a day or two. The most common complaint is a bit of fatigue and occasional nausea. I’ve been told I probably won’t even lose enough hair to be noticeable. I’ve been told there should be no long-term brain function limitations or losses.
My oncologist hopes to begin a new trial as early as the first of July. In the interim weeks, she wants to try a non-trial drug currently on the market just so we are fighting with something until the trial can begin (I can’t remember the name of it). She said that depends on what my insurance will allow.
So that is where we are today. The goal is to have the cyberknife procedures (probably a 35 minute treatment on two back-to-back days) later this week. I am on a steroid to reduce brain swelling but it is also greatly improving my appetite and energy level, which is nice. Overall, I am feeling much better than I have in recent weeks. I am still battling constipation. We got things moving way too much in the hospital, had to take immodium to shut it down, and now I’m having to get aggressive getting things moving again. I have not yet reached the optimum middle ground. This means I am very bloated, which does not help with appetite. Any prayers on this front are appreciated.
I know this is a long post. I wanted to make you as aware as possible, because I know the only information shared so far with some is that it is spread to my brain. This can conjure up all sorts of fears and imaginings.
God’s peace is an amazing thing. I have certainly run the gamut of emotions over the last several days, and still can do so on any given day. I find hope in the fact that the doctors have still not mentioned or speculated on time-frames. They have not mentioned hospice care; they have not spoken of end-of-life issues at all. I am trying not to go there ahead of them. In fact, at one point in the hospital I became very upset and called Brian over to start telling him many of my wishes for death/burial/etc. We got only a few minutes in and were interrupted by a nurse coming in to work with me. We both felt that maybe that wasn’t an accident.
I do continue to pray that if God’s will is to take me home early, that I will go quickly without a lot of deterioration – in weight, in brain function. I do not want my children to remember me like that. So if I go, it may be suddenly. My greatest hope is that again, that no one will say “I lost my battle with cancer.” I hate HATE that phrase. Cancer will not win. Jesus will win. End of story.
Mostly I still have this hope: this hope that God is only adding this brain piece to make my story more interesting. That when He rids me of cancer it will be just that more miraculous. I can’t explain this hope. But it lives and thrives in me.
What to pray? Boy, I can’t tell you that anymore. I still believe He, the great God of the universe, the God of all flesh, is powerful to do anything. I hope you will not turn passive in your prayers for me. That you will not relent to what the world says in its wisdom is likely to happen. I will submit to God’s will, and I continue to believe that His plan is somehow perfect even if death is His plan, but that may be yet to be determined.
My goal now: just take the next step, Sara. Just the next step. All is out of my control. I live the next minute, the next hour. I take one step at a time. I will not let uncontrolled worrying about what MAY happen ruin this day that I’ve been given.
You are good. You are love. I beg you for mercy. I beg you to come with your power that knows no bounds, no limits. I ask for my eyes to be fixed on you, and not the storm clouds around me. Be merciful to my children, to my husband, for I have made promises to be a help-meet and a partner. Be merciful to my family, to my friends. I long to see you face to face and be home, but my work here may not be done and I can’t stand to think of their pain. You are good, you are love. I will remember this.
I ask everything in the powerful name of Jesus. Amen.