[As originally featured on Huffington Post]
We must savor our lives. Life is precious. We need to value our loved ones and tell them daily how we feel about them. Yes, my sister Ann is my guinea pig, but she says she doesn’t mind. She’s always shocked about the things that I discover about her recovery from leukemia, the lessons we all are learning from each other and how her siblings are dealing with the roller coaster ride we experienced for the past four years. We still go on high alert when Ann gets stung by a wasp (which just happened this week) because we remember when she had swollen up from a bee sting and had to go into the hospital again. Ann says she doesn’t remember these incidents, so we are the gate keepers who remind her to go to the doctor immediately. Or when she forgets to drink her water and she’s suddenly dehydrated and back in the hospital. I think my writing about her helps her reflect on her New Normal. What will her new life look like? Will she ever remember to carry her cane (ha ha)? Will she be able to write her music again? What is her motivation?
Ann usually spends the summer in NY, but she came to Los Angeles in August this year because her mentor, Judy, passed away and she wanted to pay her respects to the family. Judy was a musician, a teacher, a good friend, and a fighter. She had cancer at least four times, maybe five, but the last time was too much for her body. The thing that’s so interesting about Judy is that she recognized her time was nearly over but she never told anyone. I had lunch with Ann and Judy last spring and there was no talk of her life ending soon. The last we heard was that she was going into hospice and then she was gone. It was that fast. Way too sudden. We might have been able to process it better if we were prepared and had a chance to say goodbye and celebrate her when she was alive. But Judy didn’t want the attention. She put up such a good front. But I have to say, it throws the loved ones left on earth in a tail spin. We have to pick up the pieces and carry on. I know Ann was stunned - and so was I.
It makes you feel so fragile when you or a loved one comes that close to the brink of death. We don’t know if they will return or not. We must stay in a state of limbo, never being able to relax totally. That’s what happened to Ann with her Bone Marrow Transplant (BMT). She was taken to the brink of death and we were in shock. We found that someone had to take the lead with Ann. Our sister, Chee, did that. Ann calls Chee her hero. Chee discovered that you can’t depend on the patient to remember anything the doctors tell the patient. We had to go with Ann and write important data in a notebook. If there is an issue, Chee goes to the doctor with Ann when Ann’s in NY, and I go with her when she’s in Los Angeles. It’s difficult for the patient to grasp all the information that is shared in such a short amount of time. It takes at least two! You need to systematize what is being shared, hear it, assimilate the gravity of the situation, and understand that you may die. Finally, you need to listen to the doctor regarding the treatment that is recommended. Then take action - decide what needs to be done and then do it. The culmination of the appointment is the best possible outcome in that moment. As family members, you need to help the patient decide what’s best for them. Afterward, all you can do is love them and treat them normally. How you relate to your loved one and how you react and support them will help everyone involved feel satisfied, no matter what the outcome. We are so fortunate that Ann’s outcome is a positive one.
Sometimes we talk about why Ann is still alive and other patients didn’t make it. One of Ann’s doctors at Roswell Park Cancer Institute in NY told her that his best friend assured the doctor that he could take care of himself after the Bone Marrow Transplant. That’s the procedure for which you need 24/7 care for 90 days. The doctor agreed to let his friend monitor himself, but his friend died. That’s a harsh lesson to learn, and one that Ann’s doctor shared in helping Ann decide to go through with the BMT. You can’t do it all yourself. You need people surrounding you, caring and showing you that you are valued. So it seems the moral of this story is to cultivate friendships and value family. You need to put the big rocks in the jar first or you’ll never get them in. All the little rocks will take over and suddenly you realize that you’ve wasted your time with triviality. The important stuff doesn’t get done. It doesn’t get in the jar. What is important? Is it family, friends, jobs, vacations, school - that’s your job: to decide and start assembling in your jar. I choose family. I will drop everything for them because that’s all that matters. Family brings me joy.
As Maya Angelou said, “Be a rainbow in someone else’s cloud. Be a blessing to somebody. That’s what I think.”