Roels Story

January – in a few days Roel will go to the Medical College of Georgia’s new cancer treatment center to prepare for his next consolidation chemo treatment. This is to be the fourth and last. If, after the treatment, tests show he is still in remission, Roel will go home to stay. His physicians will simply monitor his condition. The longer he goes without a relapse of any kind, the greater the likelihood of a complete cure. If he makes it five years without a relapse, he can consider his cure complete.

Roel started treatment months ago in August of 2009 in great physical shape. He lived a healthy lifestyle and was so well for his age that the Leukemia came as more of a shock that it would, perhaps, for someone with a history of the disease in the family. His attitude has been positive, a critical element in  achieving a good outcome, and his level of compliance as a patient could not have been better. Even so, it has been a tough experience.

Initially, the side effects were tolerable. Everyone was confident that Roel was going to breeze through the entire thing. Then it became apparent that each chemo session was taking a toll on Roel’s physical resources. Each time the side effects were more pronounced, each time Roel did not bounce back as well as before.

Now he faces his final session after recovering from a Trans Ischemic Attack (TIA, a mini-stroke) after a routine check-up. Soon, he will have recovered completely following a regimen of antibiotics to rid him of the infection that caused the TIA. Soon he will check into the Medical College of Georgia’s south ward to begin his final chemotherapy session.

His battle with the side effects make one thing apparent; if it is a tough battle for an otherwise healthy individual, how much harder must it be for patients who are not in good shape?

We are constantly bombarded with messages that warn against the dangers of obesity, hypertension, diabetes…and many other conditions that are often the result of a less than healthy lifestyle. While everyone should take these messages seriously, they have special significance for those people who have a history of cancer on their families.

Roel’s experience sends a clear message – no matter how healthy you might be right now – do a health self assessment. The incidence if cancer in the family could mean that you will face the need for chemotherapy at some time in the future. While cancer can and does affect many people without such a history, those who have this foreknowledge should assume they have an even greater need to maintain good health.

Friday, January 8th
It began as a routine check up prior to the next – and last – chemotherapy session. Roel checked into the Medical College of Georgia’s new Cancer Research Center at around 8:00 am. Blood was drawn and Roel, with Marian, waited for the results. I turned up around 9:00 am. Roel appeared fine. The side effects of the last chemo session, his third, had been tough to handle. I knew Roel was unsettled about the next round as each one seemed to drag him down a little further. I decided it was finally time to shave my head to show solidarity. I stand next to Roel, hold up my G10, pull off my skull cap and snap Roel’s astonished expression. He laughs and pulls off his now famous black, skull decorated, skull cap. He has a quarter inch of hair all over his head!

We laugh. Nurse Cheryl comes in to report the test results with Dr. Urstun. They are good. Roel is in remission, his marrow is generated healthy cells and he is ready for his last chemo session. Urstun plans to start on Monday. All that remains is for Roel’s chest ports to be flushed with Heparin before he leaves. This process ensures the ports stay clean and sterile after blood has been drawn for testing. Nurse Kimberley insert a hypodermic into the red port and pushes the Heparin. She then inserts the next needle into the white port and pushes again. Both needles are removed and Roel tucks the two ports inside his vest.

Roel then collapsed back onto the exam table. For a second, both Nurse Kimberly and I thought this a gag, an exaggerated expression of relief the check up was over. Then Roel started to slide toward the floor. Nurses poured into the room as Marian and my own wife, Christine, stepped out. Dr. Urstun and Cancer Center head Dr. Anand Jillella came in. The consensus was that a clot had been released from the VAD and caused a mini stroke.

The VAD is an access port inserted into a patient’s chest in order to make long term delivery of medications easier. They have to be flushed or cleaned on a daily basis to prevent possible clots from forming – usually by coagulated blood. Should a clot actually form, and be released into the bloodstream, it will usually form a “micro-shower” of particles that enter the artery and head for the brain. Here they will cause a Trans Ischemic Attack, or TIA.

Some weeks previously, Roel had been treated for an infection in his VAD. The doctors suspect that residual infection may be the cause.

Roel lies on the floor as medical staff check his vital signs. He appears to be recovering. He sits up and drinks a cup of water. Moments later, after holding Marian’s hand briefly  he collapses again.  Roel struggled on the floor and I move in to hold him. He tries to speak but cannot control his tongue and mouth. Even with my limit knowledge I recognize the stroke-like symptom. Within minutes seven nurses and doctors are in the room.

They respond immediately to every new symptom and soon Roel is hooked up to IVs pushing every from saline to antibiotics. I hold one IV bag until an IV-stand is brought in. Then I hold Roel’s feet to keep his legs in the air to help treat his crashing blood pressure. I ask Urstun to hand me the G10, laying ont he exam table. He puts it in my hand and I shoot pictures as I hold Roel’s leg (they are heavy!) with the other. I am so impressed with the urgent but methodical way in which the medical staff are confidently working Roel’s symptoms. I want to document this activity as the room is filed with nurse-doctor dialog and the sound of beeping Baxters. I look over my shoulder, Nurse Jean Neal is close to Marian, shocked and in tears as she watches everyone work on her husband, prone on the floor. Neal quietly reassures her, explaining what is happening. It occurs to me that the staff are well aware they have to care for Marian as well as Roel.

Roel is now more stable. Surgeon Jim Kruse drops by to discuss removing the VAD. It is decided to do it in the MCG ER. An ambulance is called to transport Roel around the block to the ER. Marian, Christine and I walk through the MCG complex to meet him there. We wait as the VAD is removed. They insert a line into a femoral vein in order to continue administering antibiotics. It’s now around 3:00pm in the afternoon and we get in to see Roel. He looks bushed – but better than he did on the floor back in the Cancer Center.

Roel now recalls that he had some pain in the VAD a few days earlier. Also that he had a ‘dizzy spell’ after flushing the Hickman (VAD) the day before. It seemed insignificant at the time – now we all wish that Roel had mentioned it earlier.

The next day I visit Roel back in MCG South where he gets his chemo. He is exhausted but visibly better. I thank him for putting on a great show the day before. I tell the entire episode is published on flickr.com, and ask if he is okay with that.

“That’s what we agreed, ” he says,”Maybe it will encourage others to make sure they tell their nurses and docs EVERYTHING that is going on with their condition. There is no whining when it comes to this stuff, it’s all important.”

I take a withering look at Roel’s hair, and leave a bottle of Blenheim’s Hot Ginger Ale on his lunch tray. I put on my skull cap and walk into the freezing Augusta air. It seems way colder than before.

I recently reviewed the book “Dying to Live” By John Rogers, a lifelong friend and a fellow journalism apprentice at the Chatham, Rochester and Gillingham News when we were young (it was the 19th century as I recall). I think it makes a great follow up the post on Why Roel’s Story?

You can find the book at:
http://www.amazon.com/Dying-Live-John-Rogers/dp/0754112225/ref=sr_1_1?ie=UTF8&s=books&qid=1262187499&sr=1-1

When John Rogers was first diagnosed with stomach cancer he was told to go home, wrap up his affairs, and prepare to die in three months. That was more than a decade ago. The first lesson here is to understand that doctors are not infallible and that a second opinion is always a good idea. John is alive and well today. His second opinion came from England’s Royal Marsden Hospital. They removed John’s stomach, made a new one, and sent him on his way. Had that been all, John might well be dead by now, albeit with more than the first prediction of three months under his belt. There was something more. John’s wife Marlene, at first stricken with the news, reverted to a fierce determination to see that her husband survived. John quickly adopted the same attitude – and it is the support and the attitude that allows John to live today. Not simply live, but to travel, to enjoy a second home in Tenerife, and to spend time with his son’s family. Doctors admit it. Recovering from cancer is thirty percent treatment and seventy per cent attitude. In the intervening years John has had other bouts of cancer including leukemia. He has survived them all – Making “Dying To Live” a must read for anyone suffering from the disease, or anyone supporting a loved one with cancer. “

Advances in  the treatment of many cancers are offering real hope now to patients who would have faced death as little as ten years ago. Roel is such an example. Had he been diagnosed with Acute Myeloid Leukemia in the 1990s, he might well have died. Today, with research reaching into the very molecular structure of cancer cells, the chances for survival are such that many cancers are now considered fully treatable. So why Roel’s story?

The entire issue of recovering from any cancer involves so much more than  the treatment alone. Initially, Roel and his friends did what most do shortly after the diagnosis. That is, search information sources for help, for broader knowledge and for some clues as to what the ensuing experience is going to be like. There is plenty of medical information about all cancers on the Internet. The need at this point was not so much medical or technical information, but for something more personal. Roel desperately wanted to hear from others who were already suffering from the disease, who were already experiencing the side effects, who were already learning to cope with the initial fears – only these fellow patients could talk to Roel in a truly meaningful way. The sad truth is that there is little or nothing of this type of communication out there. What does exist must be gleaned from Yahoo groups or Facebook pages where most of the content is anguished prayers, pleas and comments.

Roel and I both saw a need. I write, he draws, and we decided to use both skills to begin to assemble a coordinated source of information from the patient perspective that might answer more questions in the form of a narrative account of Roel’s own treatment.

Now four months into the project, we have learned something else. The doctors at the Medical College of Georgia tell us that recovery from cancer is only 30% treatment – the other 70% is attitude. Roel began treatment with a determination to survive, to do what was needed, and more. He has done extraordinarily well and so we have discovered yet another purpose for the narrative – to encourage and to give hope. If Roel’s story does as much for just one other patient, the hours of drawing and of writing and of photography will all have been worthwhile.

The early results looked good. Would it continue? Roel completed a second round of what is called ‘consolidation therapy.’ It was another week of in-hospital chemotherapy that would again devastate his immune system while at the same time eradicating cancerous blood cells. Throughout the week, Roel remained positive. He continued to draw. He continued to walk the hallways of the fifth floor of MCG south. Doctors and nurses were pleased to see him out of the bed. “They could see that I was doing what I could to work with them, to stay as healthy as I could despite the effects of the chemotherapy. They told me to tell other patients, and I did.” More patients begin to walk the hallways, seeming to understand that their illness is not as devasting as many of us are led to believe. Most importantly, some begin to realize that treating cancer is not a matter of lying in bed day after day waiting for the medical staff to pull off a cure.

Once the first round of consolidation therapy was over, Roel was sent home. He handled the chemotherapy well. He lost his hair, but other than that, he felt good. Tired, but good. Marian crocheted the hat. It gives Roel a certain look. I bet he continues to wear it long after the hair is back. The moment of truth arrived when Roel was called in to meet with Dr. Urstun. The results of the first round are in. Urstun details the results of the biopsy in concise language, and then states it simply; Roel’s bone marrow is producing healthy cells. There will be no need for a bone marrow transplant. There will need to be three more consolidation sessions, but it appears that Roel is on the road to recovery. Roel’s brother, Fred, drove from Norfolk Virginia to test as a donor for the his brother. “You don’t need Fred right, now, ” Urstun tells Roel, ” but take really good care of him anyway.”

Fred still got a good meal at Ryan’s, he may even have paid the bill!

It had been a sleepless night. Both Roel and Marian agonized over the coming test results. Roel had even seriously discussed how Marian should handle his death should the news be bad. There are some discussions two people hope never to have. The reality is that those last words and wishes can give a survivor peace and closure. Better to have that discussion, than to leave a loved one agonizing over unspoken last words. It was a grim experience for them both. The next morning they left their home on the edge of placid Clark Hill Lake and drove the thirty miles into Augusta to meet with Dr.  Celalettin Ustun at the Medical College of Georgia. Ustun is the hematologist and oncologist who is directing Roel’s treatment.  He’s young, with a full head of black hair, angular face and an intensity in his expression that lends weight to his words. He has a strong Turkish accent, but he speaks clearly and precisely, an important skill when your words are spelling out the future for the person he is addressing. He explains to Roel and Marian that patients fall into three general categories after their first chemo session. On a simple scale of 1 to 7, patients are either under 5, between 5 and seven, or over 7. Under five means the chemotherapy has failed. Over 7 means it was an almost complete success.

Roel is between 5 and 7. He has responded to treatment, but there is more to do. The news is good. It means that the chemotherapy treatment is moving him in the right direction. The next step is called “consolidation therapy.” This is another round of chemotherapy that builds on the results of the first. In simple terms, chemotherapy is a process designed to kill cancerous blood cells in the leukemia patient. A combination of drugs target the DNA of each of the leukemia cells, preventing them from reproducing. The cells then die. Testing after the treatment reveals how effective it was. In Roel’s case, the treatment was deemed successful, but some cancer cells remained.  The consolidation therapy will tell Ustun if chemotherapy alone can clear his patient’s body of cancer cells, or if another major step such as a bone marrow transplant will be needed.  Ustun and Roel schedule the consolidation therapy. At the same time, Ustun tells his patient to start the search for a bone marrow donor. If the next round of chemotherapy is not successful, the transplant will have to be completed in December.