As I was driving Brian to our appointment, this song came on the radio. I’ve never heard it before, perhaps just haven’t noticed it before….but it seemed to say exactly what was on my heart. “How many times have you heard me cry out “God please take this”? How many times have you given me strength to just keep breathing? OH! I NEED You! God, I NEED You NOW!”
As we got down the road a ways, I looked over and Brian was totally asleep. He can sleep at the drop of a hat, these days. Which, I suppose is a good thing, considering usually fatigue is also paired with the inability to actually sleep. I’m thankful for the rest he is able to get. But some days it makes the loneliness loom over me like a dark cloud, threatening to overtake me. I feel alone and scared a lot these days. I feel helpless and overwhelmed and at a loss for what to do. Why did God chose me to be Brian’s caregiver? He deserves SO much better.
We waited for over an hour to talk to a doctor today. Brian slept most of the time we waited. I just prayed and prayed. And sat numb. Stared at the floor. Stared at the ceiling. Tried to use telepathy to get a doctor to walk through the door sooner than later. Nearly fell asleep from boredom, from silence, from the numbness of it all. Dr. Ganguly was the doc of the day. You never know who you’re going to get until they walk into the door. A downside of being treated by a team of doctors rather than one primary doctor.
After sharing with Dr. Ganguly what we learned from Dr. Bartlett in St. Louis, and that we both felt that we wanted to do GND as our next treatment, he began to push back by asking what we thought we’d use for treatment after that. GND is typically a “bridge treatment” meaning you’re using it to either go into a transplant or some other follow-up regime. I’m not sure what he expected us to say, since he knows that there really is nothing out there as a maintenance drug. He suggested he talk with his team (which meets on Mondays, meaning it would push everything back for at least another week) and then get back to us with their suggestions. That’s one thing that really ticks me off about KU Med (or perhaps it happens everywhere)…if they knew we were meeting with them today, why didn’t they come up with a plan of action BEFORE our appointment? I was adamant that we wanted to start something soon because Brian’s itching is getting out of control.
He was lucky that he got an emergency phone call that caused him to leave the room. He may not have withstood my glares. I had a minor vent session with Brian while Dr. Ganguly was out of the room. Why wouldn’t they be ready with a plan of action already? Why do they always delay things and push things back? Don’t they understand these things are urgent? Don’t they understand we’re already at a miserable point?
I’m not sure what changed his mind while he was out of the room, but he came back and said “So we’ll get an EKG to make sure your heart is strong enough and then get either GND or Bendamustine lined up to start soon.” Bendamustine is also a chemo drug that we had asked Dr. McGuirk about the last time we were at KU Med. Dr. McGuirk was supposed to be looking into some studies regarding the drug and letting us know if he thought they could get it in, since it is not approved for Hogkin’s use yet. I doubt he’s researched it. Dr. Ganguly will be talking with McGuirk about Bendamustine, will wait to see the results from Brian’s EKG, and then they’ll decide which chemo he will get.
Dr. Ganguly began talking about lining everything up with a possible start of chemo next Monday. After he finished talking, I said “Is Monday the soonest we can do it?” He said no. So like a cat on a mouse, I said “we’ll make it work to do it as soon as possible.” So, he said we could get it started on Thursday of this week. That’s more like it, people.
Brian’s EKG will be tomorrow at 1. Then we will start one of the chemo options at noon on Thursday. It will be an IV chemo. Both chemos have their own sets of side effects, but they are both harder than the last IV chemo he did. They probably won’t be quite as harsh as some of the first-line treatments he had when he was first diagnosed. There’s a chance he could lose his hair, lots of fatigue, nausea, etc. Everyone reacts differently, but those are some of the side effects we have to prepare for.
The GND stands for Gemcitabine, Vinorelbine, Doxorubicin. The Doxorubicin is what can be very hard on a person’s heart. There’s always a possibility that we would just get GN rather than GND.
So that’s what we know for now.
How are we doing? That’s a tough question. I’d say I’m feeling pretty overwhelmed. I can usually tell if I’m overwhelmed if I get really tired after an appointment and just want to crawl under the covers and sleep. I suppose it’s a way my body tries to hide from the fear, pain, anxiety, decisions, etc. After we grabbed dinner on our way home and ate, I fell right to sleep. Brian jumped in the shower to scauld his skin to get temporary relief from the itching and then he jumped into bed as well. He’s been sleeping ever since (5:30pm). I woke up around 7:30 and got up and did some work from home to make up some hours. I’ve been trying not to think about things very much.
Upcoming chemo treatments always have me a bit anxious. There’s the nerves of the actual administering process and the rare “what if’s” that could come with that. But the majority of my anxiety comes from the fear of what comes next. The side effects. Will he lose his hair? If he does, I may just lose every ounce of my sanity and emotional strength. There’s just something about having hair that equates healthy or sick in my head. Will he be extremely exhausted and I’ll need to increase my care even more? I feel like I already suck, how much more can I suck? Will he get sick and be throwing up? How do I care for him? What if I’m not patient enough with him? What if something bad happens?
And let’s not forget that we have the joy of moving in 11 days. Don’t get me wrong, I’m excited to actually be in a rental house, but not really excited about the move itself. Of course, with extra activities comes the stress that somehow Brian will get completely worn down and sick throughout the process. I think we’ll have enough people lined up to help, but I’ve got to get this place all packed up and ready to go before then. It’s like a repeat of last year all over again…chemo starting, moving and packing in every spare moment I’ve got, most weeknights filled with some sort of commitment. Oh Jesus, help us. Oh Starbucks, do you have a benevolence ministry? I think this is going to require more Bible and more espresso.
I’m listening to Christmas music right now to keep me calm. I know, I know…I’m breaking my own rule of not listening to Christmas music before Thanksgiving. But it’s been really helpful. Right now “Breath of Heaven” is playing. It’s one of my favorites. Granted, I am not Mary, the mother of Jesus, but these lines are hauntingly accurate to my life right now:
I am waiting in a silent prayer.
I am frightened by the load I bear.
In a world as cold as stone,
Must I walk this path alone?
Be with me now.
Do you wonder as you watch my face,
If a wiser one should have had my place,
But I offer all I am
For the mercy of your plan.
Help me be strong.
Oh God, Be with me now….Help me be strong.