Being diagnosed with cancer can turn your world upside down. Most questions about cancer treatment are answered in sterile, clinical reports. Hopefully this post will help anyone starting cancer treatment to organize their thoughts and prepare for a successful response. If anyone reads this and has some additional tips, please feel free to leave them in the comments!
** Disclaimer — Every cancer treatment is different, these tips are just based on my experience. **
Hope Lodge NYC Room
1. Find a doctor that you truly like and trust.
This is the person to whom you are entrusting your life. Ask around. Get references and credentials from other doctors. Find out what their reputation is and go to the best doctor you can afford. Don’t play around with your life! If the doctor is in another state, don’t think they are automatically out of reach. Look into services like the Hope Lodge, which provides free lodging for cancer patients with the greatest need. There are numerous resources out there for people who are starting cancer treatment, so make sure you are doing everything you can right at the start to ensure that your treatment is a success.
2. Don’t settle for a mediocre nurse.
Every cancer treatment is different, but in my treatment we did daily blood draws and interacted with my nurse 5 days a week. The first nurse we were assigned was rude and rough. We reported her and got switched to a nurse that was very caring, responsive to requests and made sure we knew what was happening, when and why. We were all in it together and it made the entire process run much more smoothly. This is a person you are going to interact with every day for several months, so don’t settle!
3. Be open.
One of the things I did when I was diagnosed with cancer was start this blog. The reason was to keep everyone in my family informed about what was going on. Trust me, that is more useful than you think. It is much easier to post updates in one place and allow people to post comments than to be constantly bombarded with emails and phone calls and have to respond and update everyone over and over again. Another unexpected benefit of keeping this blog is that it spread to family friends and church groups and provided an ever widening support network that helped make this process much easier. Every note you get gives you a little boost when you are feeling the effects of chemo and radiation, so don’t be scared to be open about what is going on and allow people to be supportive. You’ll be surprised how much it can help.
4. Don’t try to do it alone.
First of all, you can’t. Period. You are going to have to have someone who can give you full time care. You need someone who can help you manage the rest of your life as you undergo chemotherapy. Like it or not, your full time job needs to be beating cancer. You need someone who can help you deal with insurance companies, keep doctors bills organized and paid, and even help you with meals. I was fortunate to be able to have my parents move to NYC with me when I was diagnosed with cancer. I know I couldn’t have done this without them and know exactly how lucky I am to have had their support and help every step of the way. (Even when they dragged me to the hospital when I didn’t want to go because I was neutropenic!) You just need someone helping you out and keeping things on track.
5. Take your anti-nausea pills as scheduled!
Zofran, Reglan and Ativan
Even if you are feeling ok, don’t break the rigorous schedule of anti-nausea pills. Chemo is basically poison that is being dumped into your body on a constant basis. Without the rigorous pill schedule you are on your body will start reacting to the poison by making you throw up to get it out of your system. Once you start throwing up you will keep throwing up until your body thinks it has gotten rid of the poison. Best not to start that process! I had 3 levels of nausea meds that I would take. The first was Zofran. I took this every day at morning and night. It provided a blanket protection. If I was still feeling sick 20 minutes after taking the Zofran, or at any point throughout the day I would take a Reglan. If I was still feeling sick 20 minutes after the Reglan then I would take Ativan. I would try to wait and see if that made me feel better, eat some saltine crackers, drink water and hope for the best. Some days nothing is going to help, but even then, having these meds built up in your system will help you be infinitely better than if you had slacked off!
6. When receiving radiation, use the cream they give you!
I will admit, I wasn’t as on top of this as I should have been and it really came back to burn me. When you are receiving radiation treatment, they will give you this thick zinc cream and tell you to apply it to the area that is being treated. Radiation feels like nothing and your skin won’t react right away. It doesn’t seem like you need the cream. And then you slack off and all of a sudden your leg is burnt to a crisp and blistering! Trust me, use the cream right from the start and your radiation treatment will be much smoother than mine!
7. Eat well while you can.
Chemo affects your taste buds in a weird way. Everything you eat starts tasting like cardboard even though the smells from hot food can seem so intense that they make you feel like you are going to throw up. When I had just finished my first 9-day round of chemo I was sitting in the kitchen at the Hope Lodge eating pizza. There was a guy in there who looked at me and said “You must have just started huh? Enjoy it while you can!” He was eating clear broth as he explained to me how the tomato sauce aggravated his mouth sores and was just flat out hard for his stomach to handle. Everyone deals with food differently, so you’ll just have to experiment and see what foods work for you, but be ready for things to start tasting bland. It’s just part of the territory.
8. Don’t pay attention to statistics.
I liked how one of my doctors put it. I asked him what percentage chance I had of my tumor recurring. He said he didn’t like to give numbers like that because for you it is either 0% or 100%. Every person is different and every case is different. Stay positive and do everything you can do to get rid of the cancer in your body. Don’t take half measures. Do what needs to be done with the goal of only having to do it once!
9. Be considerate of others.
As noted earlier, you are going to need help during this process and, believe it or not, this is just as hard on the people who care about you as it is on you. Possibly harder. When you get in the routine of cancer treatment your days are going to be kept very busy. It is easy for you to put your head down and go from appointment to appointment and get things done. This activity, while all geared around your cancer treatment, has a strange way of keeping your mind occupied, which helps you keep it together. Meanwhile your loved ones are doing a lot of sitting around and worrying. This lack of activity and mental engagement has a way of amplifying things and adding stress. Be aware of the strain on them and realize that everything isn’t just about you. This is a stressful time for everyone involved, and you need to be considerate of those in your life who love and care about you.
Me and my sister out at Rockefeller Center in between chemo rounds
10. Don’t stop living!
Just because you are dealing with cancer doesn’t mean you should stop living! In between each round of chemo you have about 2 weeks where you let your body recover and prepare for the next round. Take advantage of these times! When we were in New York we would go to plays, try new restaurants, walk around Central Park or any number of things. The important thing is to take things a day at a time and enjoy life to the utmost. Don’t let cancer end your life before you are done living. Take advantage of every moment and live your life to the absolute fullest. You’ll be glad you did.
This post is merely meant to be informational for people about to start their journey through cancer treatment. As I said at the start, every type of cancer is different and every type of cancer treatment is different. These were things I noticed going through rounds of chemo involving Ifosfamide and a combination of adriamycin/cysplatin. I also had 25 days of radiation in the middle of my chemo treatment. If you have any different experiences or tips for people who are about to start dealing with cancer, please leave a comment!