Keeping Hope, Staying Realistic

MissChris85

Hello all, I am a new member and already reading these posts has been so healing. It's nice to know that there are people who are experiencing something similar to myself. I have a great support system, but it seems like people don't really understand unless cancer has happened to someone they love.

My mom was diagnosed with Acute Myeloid Leukemia last May. No problem, the doctors said, if you have to get diagnosed with cancer, this one is great to get! High survival rate, we just need to do a month of chemo, bada-bing, cured.

Well, you guessed it, my mom went through that month of chemo, got herself into remission, and 8 months later the leukemia came back.

No problem, they said, we'll just do more chemo and get her a bone marrow transplant. That is THE CURE!

Another month later, you guessed it, no cure. They could not get her into remission, so no transplant for mom.

Don't worry, they said. We have this experimental treatment plan. Boy, are you at the right hospital at the right time! We will extract Natural Killer cells (very new, very exciting) from a child, incubate, put it into mom, give her some chemo, bada-boom, no sweat! Remission is right around the corner! She's a great candidate!

I gave my natural killer cells and watched as the small, precious bag dripped down into my mom's pic line. We were so hopeful! "A positive attitude can really impact how well this goes" we told ourselves. We spoke about remission and talked about how THIS TIME would be it. We could win this!

One week ago we got the results, and you know this story. The natural killer cells did not work and my mom's leukemia had actually spread. What the hell! 

My question to the group is: how do you keep hope when you know the statistics? My mom is going to start another trial in September, so new they don't even have any statistics available. I want to be hopeful, I do, but at the same time, I was really crushed by this last go around. I really believed, REALLY believed, that this would be her cure, her miracle, and... it wasn't. How should I think about this new experimental treatment plan?

Thank you, I really appreciate any input.

-Chris

 

Catholic

From reading your post, you

From reading your post, you seem or seemed fairly positive thus far.  I would continue what your doing.  Most comments/questions posted on the caregiver forum are 'my spouse/parent/friend is constantly angry how can get them to be more positive because Im at my wits end taking care of them'.  And it doesnt sound like you the caregiver are at your wits end (at least not yet).  You seemed optimistic enough to keep trying and I would stay the course and keep trying.  And I would keep a positive attitude because when the person going through cancer has a negative attitude, everyone around them is miserable.  Im a big believer that a negative attitude can impact how well cancer treatment goes.   

travisc

Speaking from experience.

MissChris . . Keep a positive attitude and help your mom keep hers.  I was disgnosed at 3 years old and given 6 months.  I just turned 44 years old.  I was diagnosed in 1976-77 when research into leukemia was only beginning and a lot of advances have been made since then.  The doctors were amazed at my determination and my parents attitude . . . Won't tell you it'll be easy but the support will make a world of difference to your mom. . and to your mom's recovery.  Hang in there and keep strong! 

DiamondInTheRough

Always move forwardand always give your mum hope just move on t

Hi MissChris,

Sorry you're going through this but from what I read you are a great caregiver and sticking by your mum like an awesome daughter! I think there are two things to consider. One is how you feel and one is how she feels. I would say, as a caregiver, especially a daughter, you should always remain positive (my wife has stage four lung cancer and I've had to learn to deal with ups and downs) while interacting with her. She needs your strength and faith in any treatment option. Positive thoughts and attitude will help. For you, however, a positive outlook may be difficult. i think you should talk about your frustration with your so or other close friend. It will help you vent and give you time to regroup emotionally so that you can be positive with your mum. She needs  your help and keeping the faith will help her. It's tough when it seems futile but just keep going. Best of luck toYou both. Also, get a second opinion. Q

JerzyGrrl

Hope and the other good stuff

One thing for sure, future patients will be grateful for patients who were in previous trials. It's not just a hope but a for-sure that your mom will be making a difference in someone's life. 

I'm sure there are other hopes that you have or can have. Hope that you have a good visit with your mom, hope that you encounter beauty in your day, hope that you recognize those moments of peace and blessing in each of your encounters with others. That doesn't negate having hope for a cure. It adds to hope. Others will be making a difference in your life, and you in theirs. 

When days and nights seem as though you - or someone you love - are running yet another ultra marathon, darn it if the sun doesn't rise again and start this thing all over again. I'm always amazed at how, when I'm running really low on hope, the Universe seems to be doing some hoping of its own... Which adds to and strengthens my own. Or, when I'm worn so low that I can't even think about hope or much else, the Universe chugs on, hopefully, as if to say, I'm with you on this, we've got this. 

We're in it for the long haul - blessings on you and yours on this crazy journey through this thing called life. Keep us posted as you're able.