And so it begins

 I am definitely feeling the love.

Earlier this week, my sister, Robin, came down for a pre-hospital visit and on Wednesday evening, my friend Michelle took me for an MRI, where we got “Patty-arranged VIP hallway seating” again. On Thursday morning, Sally got up early (yet again), to take me in for my first round of treatment.  Since then, I’ve received lots of phone calls and texts, had a handful of visitors, and was even serenaded from the mountaintop outside my window where some friends were at a show. Shout out to Ian Gillam and the Fire Kings who dedicated their second set to me.  I really appreciate all of the love and attention I’m receiving and am so grateful to be heading into this arduous process surrounded by such a dedicated tribe.

The arrow is pointing to the stage at Carter's Mountain

I am at the hospital and settled in.

Before my hospital admission yesterday (Thursday), I met with my oncologist to get the low-down on what to expect during my first visit. Although my MRI results were not back yet (and still aren’t, in fact), he told me that, because of my adrenal involvement, he wants to go ahead with the extra chemotherapy that is administered directly into the spinal fluid through lumbar puncture. I’ll get that done on Monday and three more times during my six cycles of treatment.

On a positive note, I scored a single-occupancy hospital room in the oncology ward that is spacious and has a fabulous view of not only the mountains but also and a sweet little neighborhood dog park. Many people prepping me for my visit told me to prepare to be bored for my 6-day stay. They advised me to bring comfy clothes and snacks and a few things from home to make the space feel personal. Now, this I could do, but I don’t travel light. Last year, my friend Rebecca gave me the CLAX. Not the CLAP, sillies, the CLAX, a collapsible little trolley system. It was perfect for this mission and had its maiden voyage moving me into my room.

 

The CLAX

In the afternoon, I had a PICC line placed. For those non-med techies out there, this involves feeding a narrow tube through a vein in my upper arm to the top of the superior vena cava (the big vein that delivers blood back to the heart.) It allows multiple meds to be administered and blood to be drawn without multiple IV lines or needle sticks. The process was supposed to be fairly straightforward and painless (0.5 on the 10-point pain scale, I was told), but the nurse feeding the needle that guides the tube accidentally hit a nerve and I experienced a burning stabbing pain all the way down my arm.  After I yelled to alert her and she redirected, I said “definitely not a 0.5.”  The nerve pain was short-lived but because of all of the fiddling around with the second attempt, the injection site remained quite painful all night which made using that arm difficult. It was much better today, but still a bit sore.

My treatment began last night.

The night shift swapped-in around 7pm and my night nurse began constructing the tower of power that I have aptly named, “IVan the Terrible”.  It delivers and monitors the chemo meds. Unfortunately, one of the drugs tends to create tiny bubbles in its line that sounds an alarm and stops the infusion. Needless to say, this has gotten old and earned Ivan his name. The nurse, who comes in to deal with this said that they refer to this particular drug as the “champagne of chemos” for its sparkling-like tendencies.

IVan the Terrible

Despite Ivan’s intermittent beeping, I conked out and slept through the night. That is until about 4am, when my room filled with nurses because my blood pressure dropped to the 70s over 40s. I was groggy and had a hard time waking up, but when two guys, clad in all red and wearing matching sling packs across their backs, entered the room with a sense of urgency, I popped to attention. I asked if they were the “ski patrol” and they laughed said they were the mobile emergency team. The on-call doctor was not responding so the nurses had called in the forces.  I was not feeling dizzy or confused and the stat bloodwork they did while trouble-shooting ruled out major concerns so they treated me with a bolus dose of saline (pushed in rapidly).  When the on-call doctor finally appeared, he agreed with their assessment and treatment plan. My BP has remained on the low side, but not dangerously low. They’re watching it closely and we have a plan for tonight in case it happens again so no need to worry.

I’ve had lots of visitors.

Throughout the day and evening, friends have popped in to check on me, or texted to say they plan to visit in the next day or two. What I’ve learned from these visits is that:

1. I have great friends (but I knew that already);
2. Visiting with people, although not physically tiring, can be mentally tiring;
3. It’s best to focus our conversations on the things going on in your life or talk about things we did or might do together in the near future—we know what’s going on with me;
4. Although writing this blog is helpful to me, and perhaps you, it’s not the best place to ask for immediate help/support from my local peeps, so I plan to create two WhatsApp groups to use for this purpose.
1. Homies in the Hood - for Batesvillians who have offered to help and can easily come calling when needed, give me a ride into town, or help me with something that needs immediate attention.
2. The Cville Circle – for Charlottesvillians who have offered to help and that help can best be done in or from town.

I’ll get these set up tomorrow. If you’ve already expressed a desire to be this type of helper, thank you. I'll add you to the appropriate group and you should get a message through WhatsApp. If you want to be in one of these lists just shoot me a message.

I’m doing well with the treatment.

Aside from the fun little hypotension episode this morning, I’ve not had any negative side effects from the meds yet. The anti-nausea medication is doing its job and the steroids have reduced my abdominal pain so tolerating food better. My friend Sean stopped in on his way home from work and listened to me spout on excitedly for over an hour about this and that, jumping from one topic to another, barely taking a breath. When I noticed him just staring and smiling at me for a while, I said, “I think the prednisone just kicked in.” We had a good laugh.