So, what's next?? I should be restarting the medication or begining something new that is suppose to help keep the cancer from reoccuring but will most likely make me feel unlike me!
How do you choose pain for yourself?? I guess you blame them for the decisions, hold them responsible for the decisions...! If they say I MUST take this medication then it takes the choice out of my hands. I can blame them when I feel like crap, when the headaches worsen, when I find myself emotionally out of control.
Because HOW can someone choose this for themselves??? But then someone asks you...How can you take the risk by not taking it?? Risk a reoccurance of cancer. But the truth is they really are NOT sure that the medication will do that or that it really has yet!! The studies are uncertain to say the least. But it is the only thing they have to offer. An offer that sometimes seems like NO choice at all! I am not alone in this feeling. I know several breast cancer patients on these medications and most of them feel similar. We all struggle with the choice!
It isn't to say that the doctors want to use scare tactics to make you decide on these drugs... but my doctor tells me that in some cases the patient really does have a choice...he feels I do NOT!
So, again...how do I choose pain!
They will ask if my pain has been better off the drug... I am not really sure... Headaches are pretty constant but not as severe. My diet is, at best, slightly better, but I still eat VERY small amounts and my meals are rarely complete and rarely more the once a day. The vomitting seems to have stopped and I am not dehydrating as much. My weight, while about 10 lbs lighter, seems to have leveled off. But they don't believe the medication was really at fault for most of these symptoms...but this was a trial to see how I felt off of the meds.
So, now we move forward. My next MRI needs to be scheduled for the end of May. Am I ready?? Not really sure. If the cancer has spread, I don't need to take the meds in question... not a GREAT trade off! If it hasn't spread, how do we keep it from truly reoccuring??
My radiation ocologist put it really clearly. He said "Cheryl, welcome to the world of cancer. From here on end you will be on the cancer rollercoaster!" I get it now. No one wants to do the wrong thing, no one wants to MISS something on a film, no one wants to be the one to make the desicion to do NOTHING! Doing nothing doesn't feel right medically. So, everytime you have a test they look deeply at the study to do their best NOT to miss something. Sometimes they OVER read it! I guess they feel this is better then the alternative. But this is the roller coaster Doug Fein was referring to. As a cancer patient you are always waiting for the next drop...then the next hill. One day you are okay, the next they aren't so sure! This is definitly the what we live with. I have been on this roller coaster since my last MRI. Do I or do I NOT have cancer in my brain? No two doctors that have read the films can agree on anything!
So moving forward for me means deciding to go back on a medication because it just MIGHT save my life and having yet another MRI to check my brain to see if we need to worry!
I have made one decision though... Everything they want to test must be completed before the last day of school for Christian!
I am OFFICALLY taking the summer off from CANCER! I am going to enjoy planting my flowers and then sitting and watching them grow! I am going to spend days swimming with my son and making sure he enjoys the summer with his friends. I am going to take short trips with Len and Christian to places we have always wanted to go. I am going to spend time with the friends and family that mean so much to me! I am going to do all I missed out on last summer. I am going to take the summer off from CANCER!
I can only hope the same for my "group"... all the other people in my life that are battling this unfair opponent. I know Aunt Jackie is giving it the fight of her life. They have discontinued her treatment as well because it isn't working. She will be going to Yale New Haven to see another doctor... to see if there is a study or something they may have for her. We will see... maybe she will taking the summer off from cancer!
Lou had his summer off from cancer last year and he lived it his way...to the fullest. He has his summer off from CANCER! I am so glad you had your time off from cancer Lou!!
Every cancer patient deserves and should have time off from cancer.
So, I will go forward, have my MRI, go back on my meds... and then do my best to IGNORE cancer for the rest of the summer. I will continue to reach out to those people battling this unfair opponent and help as many people as we can. Along with the help of those people spending countless hours helping us make this foundation bigger and better everyday!! I send my graditude to you, Agi, Nancy, DonnaLynn, Deana and now Pete, who is going be helping with out website and all the people who reach out by showing up...by offering their help, by being there for fundraisers, by being along side me and being our force that keeps us going! I thank you all! It is with you all that this foundation will continue to be my life and my legacy! I love you, Agi, not just for what you do but for who you are, for being there for me through ALL of this...the cancer, the blood clots, the headaches and all the work you do for this foundation...you are my rock...Day by Day!!
BTW...please feel free to post you comments... they are truly valued! Good night...le