Okay , so I am probably not totally looking like cancer is hard work in this photo. At first glance, one might think, it’s Fathers Day weekend, the sun is shining, he’s lounging in a hammock with his little boy, what worries does he have. Okay, first thing out of place is that my signature super thick mop top is gone. It was making a disgusting mess and just had to go, even after cutting it really short, it was still gross just falling out and getting in my mouth and eyes all the time, so before I left the hospital last week, out came the razor and off went the stubble. Next thing out of place, part of the reason we are outside is that the A/C went out in our house this weekend and it often felt cooler in the shade out in the yard than it did in the stuffiness of the house. Don’t worry, all is fixed now, and the very first ‘Home Improvement’ category blog post has been inspired. Stay tuned. Third problem, I felt like shit at this moment. There is really no other phrase that can so quickly and accurately sum up the collection of ick and blah that was going through me. But, that is what this post is about, so only stick around if you want to read the gory details. Remember, I write for two groups here, one is the people who know me and are concerned about what is happening to me throughout this treatment. That group is probably not as interested in the details that are about to follow. The other group I write for is the collective group of people who will find this blog tomorrow, next month or five years from now as they are panicking over a weekend having just learned they have Lymphoma and trying to get some sort of reality check of what they are in for in the coming months of treatment. Here it is readers.
I checked into Emory on Monday morning June 14. My counts were good, so they processed me right through to the hospital where I would stay inpatient for three days to get ICE chemotherapy. I was in my room and unpacked by 11:00 AM, so naturally the chemo got started flowing right away at…8:30 PM. Don’t worry though, there was plenty of protocol to go through in those nine and a half hours. I went for a walk on the Emory campus, checked my email a lot, met Dr. Kaufman who would be in charge of the floor all week, had a conversation with the nurses station crew about what I do for a living, watched some CNN, got weighed, went to dinner with my Mom, Dad and Dominic and probably had my blood pressure checked three times (it should have been rising with all the delay, but I don’t sweat little stuff like that). Anyway, you get the point. Nothing really happened, it just took the pharmacy that long to get the drugs mixed. And I was only getting one bag that night! Etoposide comes in, gets hung on the pump and away we go. 10:30 promptly, it’s all over. There was a little excitement that night around 2AM when the night nurse came in to do a blood draw from my port for their ultra important middle of the night blood cell counts and she could not get blood out out of the port.
Okay, I will intentionally digress here for a moment, again for the sake of those who just got a port or are about to get one, or better yet, are considering getting one. Let’s explain how a port works. It is a two way valve completely embedded under the skin. Most of the time, I don’t even notice it there (takes a direct punch from my three year old to remind me that I have it, and even that barely hurts anymore). The oncology nurses (be very cautious allowing anyone but an oncology nurse access you), access the port by sticking it with a device that has a needle on one end – that goes in the port, and a clear medical tube with a threaded valve on the other end. That threaded valve comes with all kinds of snap-on tools the nurses will find. They can attach it to the chemo bag, or to a syringe of saline to flush the port, or to a syringe of other medication ordered for you, or even draw blood out of it. They refer to this as blood return and it’s very important in the world of medical ports. The nurses are always checking for return. This is their way of knowing that fluids are flowing in AND out of your vein at their beck and call. If you are newly diagnosed and considering the decision to get one, I highly recommend it. I was against it at first, not wanting to implant a DEVICE in myself, but it makes things so much easier.
But not on this night. Not at 2 AM after I have been soundly sleeping for several hours. Normally, she could have come in, drawn that blood and I would not have even noticed, but she could not get blood return because the port had clogged. Like at home, plumbing only backs up in the middle of the night when you need to call the $200 per hour emergency plumber right. So she pumps away on this thing for about 15 minutes. More and more lights are being turned on as she is growing more frustrated and mumbling things to herself. This is my least favorite nurse I have met at Emory so far. She is not friendly and only works midnights. There is a theory among oncology nurses that they can physically coax a clogged port into working my making the patient move around, but it has never worked on me, but I think I was to sleepy to mention that. She is asking me to put my arms above my head, to roll over, to cough really hard, to do a Tarzan scream…then she goes to get another nurse who goes through the same steps to no effect. And finally, they bring out the equivalent of human drano. The cause of a clogged port is usually a small amount of blood stuck and dried in the plastic tubing portion, which is why they think they can shake it loose, but I must have extra sticky dried blood because it never works. They shoot a syringe full of this stuff that dissolves and thins blood and leave me for fifteen minutes to let it work. Just enough time to drift back into a sound sleep………….BANG then they are back again, lights on, hands on and working the syringe. This time there is good blood return and my sample is successfully collected for the lab.
Tuesday, nothing happened.
Tuesday night, again around 8:30, they bring in more drugs. From here on, things get more serious. The Etoposide drips again, then the Carboplatin, and then the 24 hours of Ifosfomide. And by Wednesday morning, I am feeling drowsy and my sense of taste is quickly leaving the building. The feeling is strange. I sense that something is happening in my chest because sometimes I feel that there is an icy (no pun intended to the ICE chemo) presence in my chest during chemo. I felt that even last year when it was called ABVD. For the most part, my stay in the hospital was pretty simple. Mom, Dad and Dominic came to visit again on Wednesday afternoon and I got to spend a little time with them in the lobby of the hospital because children are not allowed on the cancer floors. And I got discharged by noon on Thursday. All was uneventful, but I was feeling really tired. I napped a bit on Thursday afternoon, but I am pretty sure I ate a decent dinner Thursday night.
Friday is when my troubles began. I woke up at 6:15AM with a horrible headache. A splitting, aching monster of a headache I have never experienced before. I had an appointment at the hospital for my Neulasta shot which Dad drove me to and we rode in silence. I was also feeling very nauseous and focuses all my energies on not throwing up during the 40 minute ride to the hospital. Somehow, the infusion room was more empty than I have ever seen it and I was in and out of there in about 10 minutes and back into the car for another 40 minute ride. I was not so lucky this time and had the throw up about 5 minutes into the ride. And that was pretty much how the rest of the day would go. The doctors prescribed OxyCodone for the headache because I can’t have any regular pain medication that could mask a fever, and they also claimed I might be dehydrated. Probably, chemo does make you pee a lot, like every hour for four or five hours straight. So, I spent the rest of the day trying to get the oxycodone and water to stick to my system, but I could not stop throwing up. It just kept coming and coming and coming. I don’t know how, because I definitely was expelling far more than I could take in. I mostly tried to sleep through this misery. The headache never subsided and I actually had it straight through to Saturday morning. That was the first time the oxycodone did its thing on my pain and let me get some relief.
Honestly, most of the weekend is a blur. Between the vomiting, the headache that made me not even want to open my eyes, the aches and pains that kept me in bed and the nausea threatening vomit anytime I had a thought about food, I didn’t eat, I could barely drink and just existed for 48 hours. Saturday, I was starting to feel a little better and offered to the family that on Sunday my goal was to appear more like a normal person than a sick person. I might have succeeded, but the AC went out, the internet went out and some weird sewer gas smell started coming out of one of our bathrooms and all three of those things were putting everyone on edge.
Today, was a much better today. I ate three normal meals, I am hydrating as much as possible. Angela even made a delicious iced tea from steeped green tea, fresh lemons, mint grown in our garden and sweetened it with Agave Nectar. She is a good lady for me. I worked today, got a new lead, got the AC fixed, internet fixed and I think the sewer gas fixed itself.
Well, there is probably nobody left reading. I can tell this isn’t terribly interesting and I know I just want to finish it because I am hammering away at the keys trying to reach the end of the report. Oh…there it is.