How I evicted the worst uninvited overnight guest and took back my life
REPOCH. See my links page for articles on REPOCH. 100% remission rate. Enough said.
Follow the protocol! Read the REPOCH protocol published in Blood, commit it to memory and discuss it with your treating oncologist. Make sure your oncologist knows it and commits to following the protocol.
Be smart. Research and read every article you can find on PMBL and any other issues that come up in your treatment and care. If you don’t have the energy to do this, then ask a close friend or relative or someone you know in the medical profession for help. Knowledge is power.
Ask questions. As soon as you think of a question write it down and create lists for your doctor. You will forget your questions over time and they will wake you in the middle of the night. Keep asking your question until you get a straight answer and one you understand.
Create a cancer dossier. In it, put copies of all of your lab results, radiology and pathology reports, physician notes, treatment plans, personal notes, and copies of CDs of all your scans. Having all of this information at your finger tips is not only helpful, but empowering. Ask a loved one to create one and keep it organized if you are too sick to do it.
Get a bone marrow biopsy and lumbar puncture. You’ll want to make sure you there is no lymphoma in these areas of your body so that your treatment is property targeted.
Wear gloves and a mask. Wearing gloves and a mask can really help to prevent against colds and infections while your immune system is knocked out during chemotherapy. Regardless of whether my white blood count was low, I wore gloves every time I was out in public and a mask when I was in enclosed spaces. While the gloves kept my hands clean they more importantly reminded me not touch my face and to frequently wash and sanitize my hands. Wearing gloves and a mask is critical when in the hospital and your doctor’s office.
Get a second and even third opinion. PMBL is rare and many oncologists at smaller hospitals and non-research institutions are not familiar with literature or the protocol so it really helps to have other oncologists weigh in on your treatment.
Hydrate, hydrate, hydrate. Drink a lot water and when you think you drank enough, drink three more glasses. When you can’t drink get IV fluids. I had one liter of IV fluids every day for four or five days after each cycle and it really helped ease and sometimes eliminate all of the side effects.
Get your hair cut short early. Don’t wait too long after your first chemo cycle because your hair will fall out quickly. Cut it short early on so it is not as shocking when it falls out.
Look into your local Look Good…Feel Better program. Once you find one, sign up and go! You’ll meet one time with a group of other woman. The group is led by a local aesthetician and you’ll be given a big bag of new make-up, brushes, and lotions all donated by companies. Think Clinique, Chanel, Bobby Brown, etc. The aesthetician will give you a crash course of make-up application and give you tips on caring for your skin during your treatment. They also have wigs that you can try on. It’s a fun way to take your mind off things and meet other women who are going through the same things you are.
Get help. Get help from your family, friends, and community and hire help if you need more. Don’t think you can get through this alone. You will need help with cooking, cleaning, shopping, child care, general organization of bills and other health care related tasks, transportation to and from the hospital and your appointments.
Get connected. Stay connected with your friends and family. Send emails or blog updates. It will help you feel less isolated.
Get drugs. Can’t sleep? Get Ambien. Feel anxious? Get Ativan. Don’t worry about taking too many pharmaceuticals or creating addictions. You need all the help you can get to ease you through treatment.
Rest and sleep. Save your energy for healing. Stay in bed and don’t over do it. There will be times during treatment when you feel well and so take advantage and go out for a meal or for a walk. For all the other times, rest.
Go to physical therapy. After spending so many months in bed and after all the chemo, your muscles will be pretty weak. Get back on your feet safely by doing physical therapy to rebuild your strength. Go slow. Your strength will return.
See a therapist. Dealing with cancer is a crazy emotional roller coaster ride with severe twists and turns. Therapy can really help you understand your feelings and it will help you to release them. Don’t ignore the importance of this aspect of your “get well” program and allow the emotional side of cancer to linger.