Be Proactive

*Here's a picture of me on my laptop with my last bag of chemo during Round 4. Thankfully I have internet connection at the hospital. I keep myself busy by answering emails, posting journal entries, coordinating bone marrow drives and reading the motivating messages you have sent to me. Time flies. Thank you!

It is easy to take the backseat when you are receiving your treatment because you think there are plenty of doctors and nurses to take care of you. However, these people have many other patients and may only get to see you for about 10 minutes a day. I've learned that it is extremely important to stay on top of your treatment because you are the one that is dealing with everything all of the time. Who knows your body better than yourself?? Here are a few things that I try to do:

1. When you get admitted into the hospital, ask the nurse/doctor to give you a print out of all of the medication you will be taking. That way you can have a checklist to make sure you are taking the correct meds and dosages. Don't take medicines blindly without understanding what each one is for. There have been a few times when I was given the wrong dosage or wrong medicine. Once I took a medicine that I had never taken before because the nurse said I should take it. I should have declined, but I took it and it gave me the worst stomachache - I have learned my lesson!

2. Memorize all of the medications you are allergic to. Doctors and nurses will frequently ask you about this, so it is helpful to know them offhand or have a list in your wallet/purse that you can quickly refer to.

3. If you know that you occasionally get specific symptoms that require certain medication ask your doctor to add the medication on your chart as "PRN" a.k.a. "take as needed." That way, if the symptom arises (e.g. stomachache, headache, mouth sores, etc.), you don't have to wait for your doctor to prescribe the medicine or for the pharmacy to prepare it. This can take hours before you finally get the medicine. As a "PRN" medication, the nurse can give you the medicine as soon as you request it.

4. Make notes about your different nurses. Each nurse does things a little differently, so feel free to ask them to do things a certain way if it makes you more comfortable. Also, if you EVER feel uncomfortable with a nurse do not hesitate to ask to switch. This is your life on the line. Plus all of the nurses I have talked to say that you should feel comfortable to do this. Personally I am horrible at confrontations, but there are times that you need to stand up for yourself.

5. Feel free to ask any questions that are on your mind. I like to make a list of questions so when my doctor comes in for his daily visit I can write down his answers. It is easy to forget things when you have chemo brain.

6. Keep all of your medical receipts for your records. Also, you may be able to get some financial aid and reimbursement for some of your medical costs. Visit the Leukemia & Lymphoma Society website for more details.

7. Get a daily screenshot of your blood results. This makes it easy to track your counts on your own.

8. On the day you are getting admitted into the hospital, call 30 minutes before you are suppose to arrive to see if your room is ready. Even if Hospital Admissions tells you to come at a certain time, it is good to double check especially because it is hard to predict exactly when the patient before you will get discharged.

9. When you an outpatient receiving blood transfusions, it is also good to call the infusion clinic ahead of time to make sure the blood has arrived from the blood bank. A quick call can save you a couple of hours waiting for the blood to arrive.

10. The most important thing I've learned is that as a patient you can actively participate in your own treatment. My doctors and nurses let me help make important decisions like what medications I should take, whether I should receive blood transfusions, when I should get discharged from the hospital, etc. This is very empowering because my medical team really takes my feelings into consideration. Patients should feel completely comfortable expressing their opinion/thoughts to their medical team.