POST #8 – Let the Games Begin

Today is Wednesday October 14. Even though this Posting on my blog will appear much later, I wanted to capture my experience before it faded. This Posting is about my first 3 days at Penn State Hershey Medical Center, of my two-week stay, including chemo and transplant.

I was all set for my Monday October 12 trip to Hershey, or so I thought. I woke up at 3am Monday morning with a migraine-level headache of a LIFEtime. My conclusion was, perhaps pent up stress and anxiety had arrived and packaged itself in the form of a headache that included being physically ill, if you get my drift. All I knew was I was in 100% agony on my Important Day. Hershey called with the preferred estimated time of arrival & we agreed on “before noon”. I shared that I was suffering with a wicked headache and was told nicely “well, we have wonderful drugs here that can help”. That was the only smile I managed that morning—I was determined to get to Hershey in record time.

So, there was my sister, driving me to Hershey in her red PT Cruiser, I was sitting in the passenger seat with my red & black scarf pulled over my face to keep the sunlight out. For anyone peering the window as they drove by, it looked like some wacky kidnapping. We arrived, and were told beforehand to walk right upstairs to the unit without need to stop at the main desk. As my sister did the valet parking thing, I waited inside main entrance doors, standing by the beautiful new hospital map, with my head in my hand, obviously in pain & probably downright scary looking. I was now a patient in pain. People were staring at me. I could care less. As we approached the elevator tower, I was losing ground—I HAD to get up to that 6th floor for the DRUGS or I’d know the reason why. Just like in an annoying scene from a movie or TV show, the elevator took forEVER, then finally we entered one of the three that was finally free, and four other people had to re-open the doors to hop on. I tried to say calm, thinking.. “hmm..they too have somewhere to go, to heal the sick.” Then, a final person had to also enter our elevator pushing a huge cart of equipment. I said out loud: “I’m not moving” and if my lip curled, it did then. The cart-pusher did end up wedging it on our elevator though, and we ascended, stopping at every blasted floor. Jesus. Just get me up there, please.

So, on the 6th floor we walked down a long hallway,and around the corner was the Cancer Institute unit behind double doors. We were met outside the doors by a nurse holding a chart and she said “Are you here for room 6127?” I said, ”I’m not sure about that, but I’m Jody Millard, I’m here for the next two weeks – TAKE me.”

As I got acclimated to my room, imitrex was ordered, but was slow coming up from the pharmacy. I had already been ill repeatedly that morning and I was certain that pattern would continue. My physician and others came by shortly after my arrival and we discussed the headache. He ordered dilaudid, an opoid. Yep, not-your-father’s-painkiller shall we say, as it was a bit higher than morphine (or, was that me?) Anyway, I must have really indicated how much pain I was in.. and, he was concerned. As it flowed into my catheter I felt a woozy rush and my headache went away in what seemed like 90 seconds. LOVE IT! Even though it did make me ill, it was not a big deal. I HAD NO PAIN.

So, I began to receive my medications prior to chemo, more anti-nausea meds. I was already in a nice woozy state so I welcomed anything into that catheter, bring it on! Chemo started at 5pm. Thirty minutes prior, I had to chew on crushed ice. This I’m told would decrease the percentage of the severity of mouth sores from 75% to 25% in about a week or so from now. Oh goody. My mouth was numb by the time the chemo started, so, even though the chemo was strong—with all the prior medication– it was manageable. My episodes of illness (aka vomiting) weren’t bad. Actually, it’s unlike being ill from a virus or food poisoning, . It comes upon you rapidly, it “happens”, then, it’s over. So, my day had about a dozen “episodes” pink basin and I were friends by then, but I bid him farewell by evening. Little did I know I’d be marrying that basin, or so it would feel, in the next 13 days.

I didn’t sleep at all on Monday night, but oddly, I felt ok. Having never stayed in a hospital overnight before in my life, this was baptism by fire. Overnight due to cancer, not a broken limb or some other thing. But—the overnighting experience was fine. The sleep loss was probably due to steroids.

While awake, I thought about writing this posting. I thought about changing my furniture around in my home to accommodate my new flat screen TV. I thought about redecorating other peoples houses. I thought about work and was going on. I thought about my cat being tenderly cared for by friends, I thought about how great it was that I was here and everyone knew what was going to happen next. I thought about how lucky I was.

Tuesday (called Day 0 in Transplant Land) was the day that my stem cells would be infused into me. So the troops entered the room at about 11am. The person from the blood bank wheeled in a dry-iced container with my stem cells in 2 bags. A triangle of conversation took place to triple-check the accuracy that my cells matched me, each person read my wristband/label on cells/label on order which was most all reassuring. They were indeed MY cells, the same ones I had spent 10 hours “giving” at Hershey just 3 weeks prior . The nurse practitioner actually did the infusion directly into my catheter with my physician present and a second nurse standing by and my sister as my guard.

The infusion was another weird experience, but again, manageable.

Because my stem cell collection was “good”, I only had two large syringes of stem cells destined for me, about 2 million cells. The team shared that sometimes an infusion requires 15 or 20 syringes for one patient, based in part on how well the collection had gone or if ones’ stem cells were not strong due to prior chemo or other reasons—more vials are needed for the same final count.

Anyway, these were thick sausage-wide syringes. Eeeew. The Nurse Practioner began the process and I was forewarned about experiencing things like nausea, shortness of breath, feeling overheated, etc. As she pressed my cells into my catheter, I instantly felt like a low ember fire was making its way through my body. At first it was heat, then, it was more like a peppery feeling in the back of my throat. It felt like someone put a bit of lite Tabasco sauce or pepper in my throat and I needed to cough for no real reason as nothing was actually there of course. It wasn’t comfortable. The idea of having 20 syringes would be quite a challenge, but of course I’d endure it if that was what was needed. I’m grateful that it was just two. I had been told there’d be an aroma of creamed corn, something I never did end up sensing…but others could. My sister confirmed even hours afterwards that yes, it was in my room wafting around. Never knew it. For about 20 minutes, I had 10 eyeballs (though very friendly eyeballs) staring at me in silence as the NP was infusing me, which added curiously to the experience . In hindsight, the eyes made it more comfortable as they were all focused on me.

The infusion ended. I felt unsettled the rest of the day on Tuesday, no other way to describe it. I needed anti-nausea medication to enable me to sleep and I did so.

Wednesday “Day +1” (the day I’m writing this, Oct. 14) .. has been terrific! I feel super! I can eat (a little) and my sister and I did two 20 minute walking laps around the unit. It felt great to be out and about, even if it wasn’t far from my room, it was great.

My infusion NP stopped by and updated me with detail about “what’s next”. That was a boatload of information that was a bit new. I learned today that about 6 days from now, my white blood count will be dropping and it’ll drop to it’s lowest point. My numbers will be bottoming out , though with my stem cells, they’re fighting for me at the same time. I’ll be most susceptible to infection and from then, all will start to rise. Interventions may include continued need for acid reduction for my esophagus (as chemo weakens cells that reproduce the fastest: mouth, esophagus, mucus membrane areas) , neupogen to build blood cells, and possible blood transfusions. It is expected that I may get some kind of infection and then I’d have chest xrays, maybe a CTscan to find out what’s going on.

This concludes my update on my first 3 days. Chemo and transplant are now officially “history”. More stuff to come behind the remainder of my stay, but I’m game. Life is bettering!

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