Ten Things I Wish My Doctor Told Me About Chemotherapy
What to Bring to Chemo:
- iPod with your favorite music
- Kindle with a variety of books that you enjoy and make you laugh
- Pictures of people that love and support you
- Warm socks
- Favorite magazines
- Lotion for your hands and feet
- Cards and gifts from family and friends to open
- ANYTHING DISTRACTING to prevent boredom
- A good friend for support and to make the time go faster
There is no real way to describe the shock and fear I felt when I learned I had Ovarian Cancer. After a first and second opinion at Yale and Sloan Kettering coupled with my own research, I realized that chemotherapy was the best way for me to proceed (followed by my own comprehensive plan to build a bionic immune system). My doctor gave me little information regarding the side effects of chemotherapy, instead expecting me to formulate my own questions. In my state of shock and fear and with no knowledge whatsoever about chemotherapy I was supposed to think of questions?? Really??
Somehow I found the courage to show up to my first chemotherapy session at Sloan Kettering. It was in the middle of possibly one of the worst snowstorms ever in New York, so I had to stay overnight in New York City. Many people rescheduled so there were more nurses than patients for my first time, which never happened again at Sloan Kettering. The nurse was kind and told me not to be nervous, but the one thing my doctor had told me was that some people can have a negative reaction to the chemo (though she assured me they could handle it). Soon I was hooked up to the IV, desperately hoping I wouldn't have a negative reaction (which I didn't). While I was thinking I could still run and never come back, I was finally handed a pamphlet with a list of all the possible short-term and long-term side effects of my chemotherapy. I don't know how they expected me to process the information at that time! I finally read it over the next few days at home, but found that there weren't any practical tips to get through my treatment.
I managed to get through all six chemo sessions over 3 1/2 months without any permanent side effects, and without missing any scheduled sessions due to short-term issues. However, I spent all this time frantically trying to catch up on my research to minimize the risks and side effects. My focus now is on strengthening my immune system but I would like to share some tips that I hope can help someone else:
1. Avoid raw fish and vegetables. Chemotherapy can decrease your body's ability to fight even everyday bacteria, so avoid raw fish, uncooked vegetables, fruits without a peel. soft cheeses, and undercooked meat or eggs. Cooked vegetables are fine.
2. Be aware of the side effects of steroids. Steroids (usually used to prevent a reaction to the chemotherapy) can make you feel crazy. It took two cycles for me to discover that withdrawal from the steroids was causing me to feel extreme irritability and suicidal depression, sometimes simultaneously. If you feel any crazy emotions, discuss them with your doctor. My doctor lowered my dosage, which reduced some of the withdrawal sympatoms.
3.Use a safe mouthwash. I used Biotene mouthwash many times a day and brushed and flossed regularly. Biotene is specially formulated to reduce "dry mouth". It is important to minimize any bacteria in the mouth to avoid mouth sores, which can be extremely painful and difficult to heal during chemo.
4. Consider fasting. Side effects result when chemotherapy kills healthy cells along with the cancer cells. After my first session, I found a study indicating that fasting before, during, and after chemotherapy can reduce the effects of chemo on healthy cells, without reducing it's effectiveness against cancer cells. The basic idea is that healthy, normal cells listen to your body's instructions to slow down growth due to the fasting, but cancer cells continue growing normally. Even now the results of the study are not yet released, but research is still being conducted at the Mayo Clinic. My doctor advised against fasting, mainly because studies had not been completed, but I did it anyway. I feel like fasting was one of the main reasons I got through my treatment without any serious side effects (other than hair loss). Some more research is discussed here: Benefits of Fasting During Chemotherapy.
5. Avoid public places. Avoid public places as much as possible, especially doctors' offices and places with large crowds. When I did go out in public I brought Purell along as my new best friend. This happened in the middle of one of the worst winters I could recall, and during the cold and flu season. I took this very seriously and stayed home a lot - yes, at times it got extremely boring. The biggest challenge was not getting near the kids when they were sick. Fortunately my husband was able to work at home any time the children needed to be taken care of.
6. Compensate for nutritional deficiencies. Find out what nutritional deficiencies can result from your type of chemotherapy, and research what foods can be used to compensate. For example, my type of chemotherapy resulted in the loss of magnesium so I ate spinach, beans, and nuts to compensate. I also was terrified of neuropathy because a high percentage of people got this on a tempoary or permanent basis. I ate foods rich in Vitamin B and protein such as beans, chicken, and whole grain bread to compensate. I heard nurses giving people bags of magnesium at the end of treatment if their blood tests showed they were depleted, but I always tested fine in my magnesium levels. I never once heard a doctor or a nurse advising the patients to supplement their diet, which I never understood. Why not at least inform people of food choices that might be beneficial and let them decide?
7. Accept help. Don't hesitate to accept help when friends offer, but make sure it is help that will be beneficial for you. I turned down some offers that would have been more of an effort for me than a benefit. This isn't the time to worry about offending people or following society's rules. This is a time to focus on your health and safety, so you can ultimately be there for those that you care about.
8. Exercise! Try to exercise to minimize fatigue. Exercise can be a walk with a friend or yoga at home. Before chemotherapy I was able to bench press more than my body weight and do more pull ups than many guys (not to brag!) but after my surgery and during treatment I could barely do any extercise, and could only work out for 20 minutes. It is important to lower your expectations and accept that some exercise is better than none, rather than having unrealistic goals.
9. Use a cold cap. Consider using Cold Caps to avoid hair loss. They work on a similar philosophy to fasting, basically by slowing down the growth of hair follicles to they don't absorb the chemicals during treatment. They were still very new, and not approved by my doctor at the time I went through treatment. Furthermore, I didn't hear about them until after my first session, so it would have been too late for me to save my hair. But recently I have noticed brochures in the doctors' offices.
10. Buy only one wig. Take a friend or spouse with you when shopping for a wig and buy it before you lose your hair. Buy only one wig so you have time to see if you will use it at all. Don't be manipulated by people who want to make money knowing you are in shock and vulnerable.
I have a law degree, not a medical degree - so always check with your doctor before making any medical decisions (but don't blindly trust your doctor either). Always remember that the doctors, friends, and support system you select to help you through chemotherapy are your team: you are the team leader so ultimately any decisions are yours to make. If you or someone you love is going through chemotherapy my heart goes out to you and I hope this helps. Cheers to good health!!