On The First Day of Chemo…

My alarm was set for 6:30 a.m. this morning, but I woke before 5 a.m and couldn’t get back to sleep. So I made coffee, got the fire going in the woodstove, let Danny outside (and back in), did a load of laundry in my new washer and dryer (jumping for joy), checked FB, and all that.

I woke my guys up at 6 a.m., we got ready, and off we went to the Cancer Center. We had had some snow, but EJ drives well and it wasn’t a problem. We had to be at the Center at 9 a.m.

We only had to wait a couple minutes before we were taken back to the Infusion Room where JJ would receive his Chemo. Chris, the guy who took us back into the Infusion areas, is very upbeat and likeable.

I was surprised at how tiny the room was. I was expecting something a bit bigger. JJ sat in a comfy recliner. There was barely enough room for another chair–and we had to fit two chairs in for EJ and me. JJ’s nurse, Sue, said that after this they’d try to get us a bigger room.

I was not able to stay in the room while the nurse hooked the tubes up to JJ’s port. Since childhood I have struggled with fainting in doctor’s offices, hospitals, and science classes whenever I heard about, saw, or experienced medical procedures, accidents, or diseases. EJ and I think it’s because my empathy sensitivity is very, very high so I suffer deeply when others suffer. When I was in my mid-20’s I went to a behavioral modification counselor who taught me how to deal with it. Since that time, I have had surgeries, IV’s, blood transfusions, and so forth without a problem. But now this is my son suffering, and so I’m once again struggling with too much empathy as I used to do all those years ago. I stayed out of the room until the port was hooked up, but when I got back into the room, the nurse was explaining what to expect through the day, and I became very hot and clammy and nauseous. I was able–barely–not to faint or vomit, and after going from hot, clammy, and nauseous to cold and shaky, I was finally ok. JJ just looked on with amusement. He doesn’t like all this, but he’s not struggling with it as much as I am. He and EJ have heard me talk about how much I used to struggle with medical stuff when I was young, but they have never seen me like this.

Nurse Sue explained everything she was doing at each step. JJ was given several bags of various things–such as saline solution and anti-nausea medication–one after the other in preparation for the Chemo. It wasn’t until noon that JJ actually started receiving bags of the Chemo. Through the day, he had about three different Chemo medications, as well as more saline and Benadryl and I can’t remember what all else. After awhile the names and information all flow together into one big word. Chemo is so toxic that each time Sue brought in a bag of Chemo, she had to wear a gown to protect her if the bag ripped or anything. Also, each time a bag of Chemo was brought in, JJ had to recite his name and birthday, and Sue read off the information on the bag while another nurse double-checked the forms to make sure he was getting the right meds. It’s pretty serious.

There is a small refreshment area that was located outside JJ’s room today. It had coffee, water, and various juices that we could get whenever we wanted at no charge. The nurse told us it is important that JJ keeps hydrated and eats well. There is also a small fridge so we could bring in food from home, or we could bring in food from the hospital cafeteria or a restaurant or anything. Today EJ brought us food from the cafeteria. We will probably do that during his treatments. I think we will be too tired when we get home each day to worry about fixing meals for the next day. My friend has bought us gift certificates at our local diner. I called ahead and we picked up some food for JJ on the way home from the Cancer Center. The nurse said that some of the meds will make JJ very hungry–and he was hungry today.

Early afternoon EJ left to go to the repair shop to pick up our HHR. He said it drives like a dream now.  EJ is our “go-fer” guy since he can find his way through a maze of hallways and roads without getting lost. I tell JJ that I am the comic relief…because I make him laugh. He thinks it’s funny that I keep almost fainting. Plus I tell him silly things that make him laugh. I also kept my guys supplied with refreshments and I ask the nurse questions.

I think the best part of the day was the visit from Sam the therapy dog. All three of us love animals, and we were delighted to meet Sam and give him lovings. At one point, Sam sat down very serious, and his handler said, “Oh, Sam, aren’t you going to smile for them?” And Sam gave the biggest grin ever. We adore Sam.

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We left the Cancer Center a little after 4:30 p.m. However, our day isn’t really finished. I have to care for JJ while EJ still has to go to work. We got home about a half hour before he had to leave for work. We are thankful that his company is allowing him to work half days while JJ is on Chemo so he can be with us during treatment. JJ has to take anti-nausea pills every eight hours, so I have set my phone alarm clock to remind me when it’s time for him to take another one. Next one is at 2 a.m.

In some ways the Chemo day is’t as bad as what we’ve experienced the last couple of weeks because we don’t have to rush all over keeping appointments. EJ is able to sleep in the chair a bit. However, it is tiring to be at the hospital all day. Tomorrow we have to be at the Cancer Center for five hours. As far as I can tell, we will have to be at the Cancer Center almost every day for the next four months. The schedule is grueling and we are exhausted. However, our spirits are remaining strong.

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16 Comments on “On The First Day of Chemo…

  1. This is so much for all three of you and I’m very proud here on the other side of the world that I can share this with you and praying for you. Love you all really so much ❤

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  2. I am so glad you are there on the other side of the world too, Simone. Sometimes I say to JJ: “You realize that people all over the world are praying for you?” It’s such a comfort. Thank you for being here with us, Simone. I love you too!

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    • Thank you so much, Belmont! It is a difficult time. We are staying positive in spirit, but we are utterly exhausted physically!

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  3. Did they warn you guys about avoiding contact with bodily fluids after chemo? It’s really toxic stuff, and I was told to double flush the toilet with the lid down every time, handle sweat/blood/vomit stained sheets and garments with gloves and boil wash, not to swallow my tears/mucus, whatever, and various other things. Quite a lot to take on board when you’re distracted by concern for a loved one, but it’s a precaution so you stay healthy as a carer. I just worry because you didn’t mention being informed about aftercare, and you might be at risk.

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    • Yes, Katechiconi, they did mention those precautions. I just hadn’t gotten around to writing about them. Thanks for making sure we were aware, though!

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  4. My nephew has just come into the 5 year remission and it has been a rough time for all. Stephen also had the problem of nausea, he has ALL leukemia. I think that positive thinking kept him going as during this time he attended University and got his masters in engineering. so always keep up your spirits and you will prevail.

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  5. I’ve worked as an oncology nurse and now as an infusion nurse, so I have some idea of your experience. Your family will be in my prayers!

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  6. JJ and family. Thoughts and prayers for your healing. Belmont Rooster reblogged your posted. It is very nice to see your Scout troop is with you in this journey. Hang in there JJ !

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  7. Just reading about the precautions you have to take even with regard to bodily fluids is a real eye opener for me! To think that it is so toxic one is not even supposed to touch it is very confronting and I can even see myself feeling a little bit faint with concern. We can’t even touch it, but it is going into the bodies of our loved one *distressing*

    Hang in there. It looks like you have alot of people there with you in prayer and you can myself and my family to the list!

    ML
    xx

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