Robin Roberts' Journey: Inside Her Courageous Fight Against MDS

Robin Roberts Surrounded by Loved Ones After Treatment
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Robin Roberts' return to "Good Morning America" Wednesday marked the end of a long road that began with her announcement she had a rare blood disorder called myelodysplastic syndrome or MDS and would take medical leave from morning TV to undergo a bone marrow transplant.

As the anchor left to take care of her health, cameras followed her journey. The personal and candid look at her fight against MDS, filled with laughter and tears, will air on a special "20/20" tonight at 10 p.m. ET. Roberts tells her story of the toughest fight of her life in her own words -- from sharing her diagnosis to viewers on "GMA," to finding the perfect match for a bone marrow donor in her sister Sally-Ann, to dealing with the loss of her beloved mother, and the highs and lows of the treatment and recovery.

Physical exams, blood and painful bone marrow tests and chemotherapy quickly became Roberts' "new normal."

The day before she entered the hospital, her longtime hairdresser, Petula Skeete, shaved her head. It was a decision Roberts made to take control in her life, she said.

"It was so traumatic last time and I wanted to be in control," she said. "I am in control. I am deciding when my hair goes. I'm not waiting in that hospital bed for it to fall out. I'm not waiting. I made this decision. And it was the right decision."

Watch "20/20" TONIGHT at 10 p.m. ET for a behind-the-scenes look at Roberts' journey.

To learn more about bone marrow donation with Be the Match, CLICK HERE.

Roberts underwent 10 consecutive days of intensive chemotherapy, which decimated her marrow and immune system, to prepare her for the transplant. Her constant companion was an IV pole.

"When I started, there was just like something for hydration, and then they would add another bag. … they would put chemo, and … all of a sudden I couldn't even see the pole for all the bags that were hanging off of it," she said. "Some of it was nutrition and there was this white bag called, 'lipids.' And it would come in the room, and I could just smell it. And it looked like... white-out. That's how it was. But it was giving me life, it was keeping me alive."

She grew so attached to the pole, Roberts said, that she decided to name it.

"A friend went online and saw that the disco name for Robin is Roshanda, so Roshanda was the name of my IV pole," said Roberts, who used it as a disco poll to dance with when her spirits were high.

RELATED: 'You'll Die in 1-2 Years' to 'You'll Interview Obama': Robin Roberts' Fateful Day

It was small moments like these, the anchor said, that helped her get into the right frame of mind before her transplant in late September.

The morning of the transplant on Sept. 20, Roberts was surrounded by her sisters, Dorothy Roberts McEwen and Sally-Ann Roberts, her bone marrow donor, and close friends. The day began with quiet prayer and soulful song. Roberts said it was all a blur.

"I've seen the video, and I've seen the people that were in the room and everything that happened. I don't remember," she said. "I was in another place. … I had gone through ten consecutive days of chemotherapy. I had nothing left."

Using a syringe, Dr. Sergio Giralt of New York's Memorial Sloan-Kettering Cancer Center injected millions of Sally Ann's stem cells slowly and steadily into Roberts' system.

WATCH: Robin Roberts Talks Beating MDS With Diane Sawyer

CLICK HERE to Follow Robin's Journey

Robin Roberts Reflects on Transplant Day, Isolation

"The one thing I do remember about transplant day is when Dr. Giralt is standing over me and … I'm looking up at Dr. Giralt, and he's looking down at me, and we're the only two in the room. I don't hear anybody else, I don't see anybody else. I just see Dr. Giralt. And he starts inserting the syringe into a port I have in my chest. And I remember... seeing tears. He has his mask on, but I remember seeing tears in Dr. Giralt's eyes. And I can see that his mouth is moving, and he's saying something," Roberts recalled.

He was praying. "Let God do his work and it will work,'" Giralt explained. "To me, it does capture the real sense of the moment ….The way this finally evolves is a whole joint of events that may be beyond our control, and is in the control of a power above us. And our role is to do the best we can, with the instruments that we have."

While the procedure took just five minutes, Roberts' road to recovery had just begun. As the new cells began to set up shop and get ready to regenerate, Roberts was in complete isolation.

"There was something that was very... isolating about being in isolation," she said with a laugh. "That it's just you. But it's also a way of really... my grandma used to always say, she loved the mornings. And she loved quiet time. Boy, did I have a lot of quiet time. And I learned to appreciate it, because I've always been just going non-stop."

The first 30 days when the bone marrow takes hold is a tough time in treatment, according to Dr. Gail Roboz, the New York-Presbyterian Hospital/Weill Cornell Medical Center oncologist who is treating Roberts. There are mouth sores, weight loss, diarrhea, hair loss and food doesn't taste good.

"There was a time after the transplant that the back of my throat, I was told, looked like I had swallowed a blow torch. That's how raw, that's how red, that's how painful my throat was. I couldn't swallow, I couldn't eat. It was very difficult to, to even drink," she said.

Roberts slowly began to regain her strength. After a month, she was eating solid food again, and then 30 days of isolation, she took her first breath of fresh air and was able to return home. That marked a major milestone in her recovery and she continued to will her body to match her fighting spirit.

READ MORE: Next Steps in Robin's Recovery

Watch the full story on "A Special Edition of 20/20: Robin Roberts' Journey" TONIGHT at 10 p.m. ET

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