here i go again... on my own

 

It's Time for Chemo #1

Today ended up being the longest day I've ever had in treatment... ever. I started at 8am and finished around 4-4:30pm. LONG day. 

I fully support getting your port ready about 30 minutes before treatment (ignore the 5-15 min suggestion on the Lidocaine box - give yourself 30 minutes to allow for more time and more numbing). So, for me, I apply the Lidocaine over my port and put a small square of Saran Wrap over it right before leaving to go to treatment. It takes me about 30 mins to get to my treatment center, so it gives it time to work. The Lidocaine helps numb the area so the needle will not hurt as much when poked and the Saran Wrap keeps the Lidocaine on your skin and not on your clothes.

When I arrive to the treatment center on chemo days, it starts with a bit of bloodwork in the lab. They have to make sure your bloodwork is good before giving you chemo. I have a port, so they just hook me up with the right type of IV needle, take my blood samples, and send me to wait to be called back to the treatment room. Every treatment room is a bit different, but also a bit the same.  

After finishing labs, I am assigned a treatment area section (there are at least 9 sections). This picture is actually a chair where I get my chemo. My treatment center is pretty big (especially for where I live), so there are multiple sections with rows of around 6 people in each row (3x3), so I will generally be sitting directly across from someone while taking my treatment.

Usually, it's lines of lazy-boy styled chairs (in boring neutral colors) spaced apart with a seat for someone to visit with you. Each chair has curtains to pull around them for privacy (if you want it). Window seats are great (but bright). 

When you get back into the treatment area, they weigh you and get your blood pressure. Then they bring up your first treatment bags and syringes of  anti-nausea medications. You will have to give them your name and birthdate at this point - and  you better be ready to do that again when they bring the other bags of chemo medication. For me, today, it is Keytruda (immunotherapy), Paclitaxel (Taxol chemo), and Carboplatin (chemo).

Now, each of these drugs take a certain amount of time to go. And on the first day, they push it slower than any other day you will be here. So, just be aware each medication has a specific amount of time to run through your IV.

Then there are a few other factors to how long you may be at treatment - mainly if you have any reactions or are nauseated. I did end up getting nauseous which made them slow down the last parts of my treatment which meant I ended up being at the treatment center for closer to 8 hours this day. 

A funny fact - this process has changed from 10 years ago. It is not a big change, but one I did find kind of funny. They now gave me a dose of Benadryl in that first part of the anti-nausea medication. It is given into the IV line by a syringe in liquid form. And it packs a sleeping punch. I think it knocked me out for at least 1 hour. I was in and out of consciousness... in one of the best sleeps I had in a while. I wasn't expecting it at all. 

I came into chemotherapy with a fun and creative plan to use my time. I am an artist - check out my stuff here - and I decided that this time around I am going to draw while in chemo and the week after. So, I am making an art chemo journal. I am incorporating papers, comics, and medical reports/prescriptions/information into my drawings each week. I am making little cancer monsters - and using my creativity to help making something beautiful out of this crazy (and often ugly) journey.

 

I was working on my drawing (finished drawing from day one is on the right) and didn't realize why I was nodding off while trying to work on it. At some point, the nurse said "your about to have a Benadryl high drawing" before I fell asleep. 

I honestly didn't even know it was Benadryl until after I woke up and asked the nurse what happened. I then looked around and saw that almost everyone near me were also napping and sleeping from all the Benadryl they were given. I am not sure how much we need the Benadryl or how much it helps the nurses out - but it does keep us all pretty quiet for a few hours in treatment.

I am not sure if every treatment center gives out Benadryl like this, but 10 years ago it wasn't like this. I never fell asleep like that... instead I remember being awake to spend time hanging out with a friend. Now, I am passed out. On the positive, it is solid sleep, and I still had a lot of time to work on my drawing... kind of... 

I was leading in to another tip for those who may need it - ice therapy for Taxol-based chemotherapy. When I took Taxol 10 years ago, it really messed with my nervous system. Not only during treatment, but permanently. I have been on Lyrica for years to manage the neuropathy damage and pain. So, knowing I am going to be on Taxol again is somewhat worrisome. To try and help prevent more nerve issues, I am doing ice therapy. Yep - that's me on the left in the middle of ice therapy.

If you're curious - it means that when I am taking the Taxol chemo - I sit with my hands and feet emerged in buckets with bags of ice. They put a layer of bagged ice both below and above my feet and hands for between 1 hour and 1.5 hours. I have on a pair of socks and my hands go into a very thin layer of paper (like the gown you wear at a gyno office). So, there is not a thick layer between you and the ice.

As you can imagine, it is not exactly fun. It is slightly painful at first, but then it gets kind of numb. And yes, it is cold. I usually get a few warm blankets beforehand, but sometimes I fall asleep (from the Benadryl) and wake up very cold. I have learned to ask for additional warm blankets after to try and warm me up. The nurses always forget to bring them before I wake up - no matter how many times I have asked. Ideally, it would be nice to have them before I was fully conscious again!

So, this adds a complicated layer to my dreams of drawing in treatment. Now, I generally don't get to draw until after my hands warm up a bit. My plan for drawing in chemo is harder than I expected, but I am still going to find a way to make it work... despite the sleeping and ice numbing. 

Not every treatment is going to be 8 hours long, but for me they will last between 4 - 6 hours depending on if it is my long or short day.

My schedule for the next 3 months is:

Every week I will have

Paclitaxel (Taxol chemo) and Carboplatin (chemo) and every 3rd treatment they will add Keytruda (immunotherapy)

Then for the following 3 months every week I will have

Paclitaxel (Taxol chemo) and Doxorubicin (Adriamycin "Red Devil" chemo) and every 3rd treatment they will add Keytruda (immunotherapy)

Then we will reassess - see if any of these chemos are working.

I will then head into some type of surgery - we don't know which one since I don't have a primary tumor/starting point. But, I will have at least a large section of lymph nodes removed.

Then I will have Radiation for at least 6-7 weeks while simultaneously go back on Keytruda for at least another 6 months (& possibly more chemo if those chemos didn't work).

So, I am in for a very long and challenging year!

Crazy inspiration - time to dance on my car - Whitesnake "Here I Go Again"