— I woke up at 4:00 a.m. one morning and couldn’t sleep yet another night, all the thoughts running through my head of what my life had become, I made a list of all the things I had learned from my husband’s brain tumor for any of those out there who have just been diagnosed and are looking for information.
1. Don’t decide your treatment plan out of fear.
2. No two people respond the same with this disease.
3. Don’t let doctors scare you with their statistics and warnings of imminent death. WE had our bad experience with a neurosurgeon that was a huge jerk. They are not GOD. They cannot predict when you are going to die. If a surgeon can’t operate, he has no interest in your well-being. Once the radiologist is done, he is finished with you as well. Your only source of help beyond the protocol treatment is the oncologist if you are not seeing a naturopathic doctor.
4. CAREFULLY decide if you want to do radiation or chemo or both (There ARE other options).
5. Research clinical trials prior to all treatments. Some won’t take new patients, depending on prior treatments received. Clinicaltrials.org is a good source.
6. Chemo causes blood clots, which can give you pulmonary embolisms.
7. Radiation can cause your brain to bleed, be careful if you get clots and then proceed to use blood thinners.
8. Dexamethasone causes muscle atrophy and will severely decrease the muscles in your pelvic, quads, and shoulder areas. Try to keep this drug to a minimum. It is really hard to get off this drug as well. Your own body’s adrenals stop producing when this steroid takes over, and when you withdraw it causes depression, lack of appetite, and mental/physical deficits that are unique to each person. In addition, it reduces your vision.
9. Radiation can kill your good brain cells as well as bad. You may never be the same mentally.
10. This cancer becomes your life. (It becomes the caregiver’s life as well). Doctor appointments, dispensing medication, physical therapy, counseling, and in my case, full help with dressing, eating, and going places).
11. Diet changes DO help.
12. Find a naturopath or holistic doctor to complement your treatment plan, OR use their treatment plan. They can create a cocktail of drugs to help you fight this without chemo to poison the body.
13. Your body can develop the tumor for differing reasons, but whatever the reasons are, your body was weakened, and the cancer cells took over where your good cells could not fight it off. You must support your immune system to naturally fight it off. This is your best defense.
14. Your balance may be affected as was my husband’s and you fall. These falls can cause other complications, which then become painful situations to deal with on a daily basis. Find good support for that person to get around, or make a safe environment for them to get to the bathroom during the night.
15. Rick Simpson GOLD Cannabis paste is amazing and can bring a personality back to life, help with pain, and help fight the cancer cells. You should try to break the brain barrier with this and insert it rectally for the best results; however, my husband could not tolerate that, so we put it under his tongue.
16. Your loved one will most likely no longer be a source of strength to share in the daily struggles of work, chores, and life. You will become the caregiver and lose the support role of your spouse. The dynamic of your relationship changes forever. This is where I suffer grief eventually.
17. As the caregiver, I suffered from these emotions in somewhat order: Fear, sadness, determination, hope, acceptance, anger, guilt, and grief. There is love and happiness in there, too, but these were the main emotions as stuff happened.
18. I found that a housekeeper and organic paleo food delivery service have been invaluable.
19. Depending on the diagnosed person, not all patients are CAPABLE of having a great attitude, willingness to fight, and taking treatment graciously. So for those caregivers out there who are dealing with a sick loved one they are trying to help live, don’t feel bad that you are doing all the fighting. They are probably just not capable of it themselves, and it is one more challenge God has given us to fight. You are not alone.
20. Lastly, always see a neuro SPECIALIST for brain surgery, treatment, and advice. And get the tissue to a pathology treatment place so you can fight your tumor with the drugs that it is least resistant to. Why take a chemo that won’t even work?
