While I realize my goal with this blog is to focus on the emotional and social issues of teenage cancer treatment, I did want to make at least one post about the physical issues. Recently, a good friend of mine was diagnosed with a leukemia relapse, and a late one at that, just as I had been. When I found out, I immediately wanted to help her and decided that the best way to do that would be to come up with a list, a list of the 20 most important things to consider and keep in mind when first diagnosed. Since I think it might be helpful to others, I am sharing it here!
So, here it goes!
- If you don't agree with what your doctors are deciding, or if you have concerns about something, TELL THEM AND DON’T BE AFRAID TO PUSH BACK. You know yourself and your body so much better than they do, and what works for others may not work for you. Don't worry about making them do things differently than they otherwise would.
- If you are struggling with nausea, ask your doctor about Emend. It is a medicine only approved for adults yet, but if you are adult size it is safe. It saved me so many days in the hospital because it enabled me to eat during my chemo stays, so I did not lose intense amounts of weight as I did in the first months of my treatment. It can be used with Zofran, Ativan, etc. if necessary. The entire combination was necessary for me sometimes!
- Make sure you talk with your doctors about fertility. If you don’t feel they are guiding you in the right direction, ask to see a fertility specialist.
- Drink at least one bottle of water before going in for chemo to ensure that your properly hydrated! Many chemos require that you be pre-hydrated since they are unusually toxic and your kidneys will need extra fluids to help flush them out safely. It has been my personal experience that hydrating yourself will speed up the process quite a bit because the nurses have no problem making you wait to get chemo until they have deemed you hydrated enough! So, you’ll get home sooner if you expedite that process!
- Be mindful of allergic reactions to chemo or blood products. I experienced anaphylactic shock multiple times over the course of my treatment, from platelets and from two types of drugs, because my body had developed an intolerance to them. These reactions can be scary, so just be aware that they are possible so you aren’t entirely terrified if they do happen.
- Be wary of spinal taps. I had one done so badly that I ended up with a terrible spinal headache for over thirty days. The pain became so debilitating that I could not stand or even sit up straight without vomiting and feeling excruciating pain in the front of my head. If you de get a spinal headache, just make sure you let your doctor know. If you feel it has been more than a week since it began, ask your doctors about an epidural blood patch, a procedure that instantaneously closes whatever hole was allowing spinal fluid to leak and takes away all the pain.
- Keep careful track of your meds. I had something dosed wrong once, because no checking system is perfect. More importantly, it can be easy to forget what meds you need to take, since there are usually so many and they are all taken at different times or different days.
- This one’s a little weird but I wanted to mention it anyway. With some of the drugs I got, I ended up with a lot of mucus building up in my mouth and throat, which made the nausea worse. If you find yourself with that kind of strange side effect, don’t worry! Let your nurse know and she can get you a suction tube to keep in your mouth.
- Get a TV show on DVD or something you can bring to the hospital to watch. I brought “Friends”, and it is still one of my favorites! There is no doubt that you are going to feel really bad sometimes, and lying there will be one of the only things you can do. In those cases, it's great to have something funny to distract you!
- Eat pop tarts when having trouble eating!! They are dry so do not upset your stomach, but are yummy! Saltine crackers and peanut butter is good too!
- Eat whatever, even if it is not necessarily healthy food, whenever you can during these first months because it is going to be difficult to keep up your weight when not eating much during chemo.
- Your hair will probably come in and out several times! You can see from photos on this blog that my hair definitely did weird things!
- Get lots of cozy hats or scarves. It is nice to be bald in the summer, but come fall and winter, it’s amazing how much heat is lost out of the top of your head when there is no hair there for insulation!
- Go outside when you can, the fresh air can be rejuvenating! Just be careful of mowed grass or dead leaves!
- If you are getting steroids as part of your treatment, be prepared to look like a chipmunk :) They make you insatiably hungry and thirsty. I ate half of a medium pizza when I was on steroids! Needless to say, it made me gain weight too. The most of it is from water weight though, because the steroids cause you to retain more water than normal (hence the swelling of your face). Just roll with it, and try to be aware that you may not actually be hungry for that entire half pizza, your body may just be fooling you!
- Find a hobby, you have to do something with your time! I did crafts and painting!
- If you get constipated from Vincristine or other drugs, eat apricots. I’m serious! I was prescribed all kinds of anti-constipation pills at one point or another, but the only thing that ever really helped was eating apricots! They are much more tasty than pills too!
- Keep a journal. You can include what your emotions and reactions to the different stages of your treatment were, but you can also just record what happened. I kept journals during my treatment, and I am so glad I did because now I can look back at them and remember exactly how I felt!
- Spend time with your family, whether that means hugging your brother, sprawling out on the couch next to your dad, laying on the floor and snuggling with your pets, or curling up and watching a movie with your mom!
- Read more of my blog posts for more information!
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