Monday, October 15, 2012

Six Days in Baylor Hosp

I haven’t updated lately (I’m sorry Aunt Onvie).  As much as the blog has come to mean to me these last few years, I just haven’t been able to make myself sit down and write lately.

 On Monday October 8th, I took Tanner over to see Dr. Berryman in Dallas for his monthly appointment and could tell right away that he wasn’t in a good mood – but was, instead, quiet and withdrawn.  After they drew his blood and we were placed in the back area waiting room, I pulled out my phone to show Tanner a picture of his nephew Beckett in his Halloween costume and he immediately started crying.  The next thing I knew, he was curled into a ball and was hyperventilating and his back started bowing up in spasms.
The nurses brought Dr. Berryman out and they moved him into a back room where he could lie down on a bed.  He calmed briefly but then started back almost immediately – to the point that he was throwing up and seemed disoriented and unsure of where he was.  When Dr. Berryman sat down to try and talk to him, Tanner told him that he was “scared -just scared” - and he shook his fist in the air.  There was so much fear and anger all tied up together inside of him at that moment.
Finally, Dr. Berryman told us that he was going to admit Tanner to the hospital and was going to call in a Pain Specialist – and a Psychiatrist. 

He ended up staying in the hospital for six days and, from what I can gather, they seem to think most of the issues Tanner is experiencing at this time are mental – and that he was experiencing a panic attack there in the doctor’s office.

 He was finally released from Baylor Hospital over in Dallas this Saturday and prescriptions for Klonopin and Cymbalta were added to all the other prescriptions he takes for his cancer treatment.

 With him being 20 years of age now, I am mostly left out of much of the discussions - but I did hear Dr. Berryman talking to his nurses and saying that he thinks the largest part of Tanner’s issues were caused by nerves and stress – which in turn caused me to turn to research online…

 CYMBALTA (Duloxetine):

Why is this medication prescribed?

Duloxetine is used to treat depression and generalized anxiety disorder (GAD; excessive worry and tension that disrupts daily life and lasts for 6 months or longer). Duloxetine is also used to treat pain and tingling caused by diabetic neuropathy (damage to nerves that can develop in people who have diabetes) and fibromyalgia (a long-lasting condition that may cause pain, muscle stiffness and tenderness, tiredness, and difficulty falling asleep or staying asleep). Duloxetine is also used to treat ongoing bone or muscle pain such as lower back pain or osteoarthritis (joint pain or stiffness that may worsen over time). Duloxetine is in a class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs). It works by increasing the amounts of serotonin and norepinephrine, natural substances in the brain that help maintain mental balance and stop the movement of pain signals in the brain

KLONOPIN (Clonazepam):

Why is this medication prescribed?

Clonazepam is used alone or in combination with other medications to control certain types of seizures. It is also used to relieve panic attacks (sudden, unexpected attacks of extreme fear and worry about these attacks). Clonazepam is in a class of medications called benzodiazepines. It works by decreasing abnormal electrical activity in the brain.

 Post-Traumatic Stress Disorder in Childhood Cancer Survivors: How Common Is It?

Several past studies on the psychological impact of childhood cancer have focused on the people around the patient, such as the parents and siblings, or on children during and immediately following their cancers. But what happens to those children when they grow up?

Anne Kazak, Ph.D., professor and director of psychology research at the University of Pennsylvania and director of the Department of Psychology at the Children’s Hospital of Philadelphia, has led a decade-long effort to understand the mental toll of childhood cancer.
Kazak is now leading a randomized study, funded by the National Cancer Institute, to determine whether intervention with use of cognitive behavioral therapy and family therapy can help cancer survivors and their families. She will also develop an intervention program with support from the Lance Armstrong Foundation.

Most recently, her group found that many childhood cancer survivors exhibit signs of post-traumatic stress disorder (PTSD) when they reach young adulthood. PTSD, the malady most famous for lingering, hidden emotional reactions to war in shell-shocked veterans, is now recognized as a syndrome in patients whose feelings about their disease are not resolved. Patients may just want to get on with their lives, but these emotions, often unrecognized, do not always vanish; they can grow stronger and erupt unexpectedly.

Post-Traumatic Stress

Kazak’s latest study revealed that 20% of 78 young adults who survived cancer met the full clinical diagnosis of PTSD. Of the remaining patients, 45% to 90% exhibited at least one symptom of PTSD, depending on the type of criteria used.
Many of those symptoms included overwhelming bursts of anxiety and avoidance related to their cancer experience. “The patients worried that their lives remained in danger and events associated with treatment, such as returning to the hospital, or even smells associated with hospitals, are potent reminders strong enough to generate strong physical and emotional responses years, even decades, later,” said Wendy Hobbie, one of the study’s authors.

The rate of PTSD symptoms in these adults, aged 19–40, was four times higher than in a group of cancer survivors aged 9–17 who were studied earlier. The younger survivors’ sense of mortality was not as fully developed. The emotional price to pay for surviving cancer seems to coincide with the normal increased stress of young adulthood, when people are setting out on careers and spouses and children, said Hobbie. “They reach a point where, developmentally, they realize cancer has a far-reaching impact. At 16, you don’t care if you had it. At 30, when you meet the love of your life, you do.”
This most recent study is just one of a series led by Kazak, in collaboration with a team of researchers that includes Margaret Stuber, M.D., of the Neuropsychiatric Institute at the University of California at Los Angeles. Kazak’s ultimate goal is to design intervention strategies that can help patients, parents, and siblings to recognize PTSD symptoms and treat them effectively.

Kazak and Stuber were the first to find an association between ongoing difficulties, concerns, and anxieties in former leukemia patients and trauma seen in PTSD.   They also found, among other discoveries, that mothers of pediatric cancer survivors have significant symptoms of PTSD—much higher rates than PTSD seen in their children, who were only several years past treatment. Their studies revealed a pattern of increasing PTSD as patients aged, but unremitting widespread symptoms of trauma in their parents.

More Survivors

More and more adults are survivors of childhood cancer; it is estimated that by 2010 one in every 250 to 400 adults between the ages of 21 and 44 will be a survivor of childhood or adolescent cancer. But, mostly, the research accurately reflects what has been seen in cancer treatment. Just as many patients experience physical penalties from their initial cancer cure, they also exhibit psychological consequences. “We believe this isn’t something brand new in the 1990s,” said Stuber. “It’s just that no one had asked the right questions before. The advice that had often been given—that patients should go out and celebrate their survivorship and pretend nothing ever happened to them—was not good.”
University of Pennsylvania pediatric oncologist Anna Meadows, M.D., said that she is concerned that adult cancer survivors receive even less psychosocial support than children, and that includes childhood cancer survivors as they age and move into general medical care. She also worries that in the future, as now, money will not be available to implement intervention programs for any of these patients or for the parents, who can be the most traumatized. “Mental health efforts just do not get reimbursed for the effort expended,” she said. “There is more to a cure than just being alive, and it’s time the funders recognize that.”

*       Oxford University Press

I know that my son is experiencing stress – to a degree that not even I have realized.

Posttraumatic stress disorder[note 1] (PTSD) is a severe anxiety disorder that can develop after exposure to any event that results in psychological trauma. This event may involve the threat of death to oneself or to someone else, or to one's own or someone else's physical, sexual, or psychological integrity, overwhelming the individual's ability to cope. As an effect of psychological trauma, PTSD is less frequent and more enduring than the more commonly seen post traumatic stress (also known as acute stress response).Diagnostic symptoms for PTSD include re-experiencing the original trauma(s) through flashbacks or nightmares, avoidance of stimuli associated with the trauma, and increased arousal—such as difficulty falling or staying asleep, anger, and hypervigilance. Formal diagnostic criteria require that the symptoms last more than one month and cause significant impairment in social, occupational, or other important areas of functioning.

After the six days in the hospital and taking his new medications, Tanner seems better, calmer, happier… but basic cancer treatment is not all Tanner will have to deal with the rest of his life.  He’s also going to have to live with this fear for the rest of his life.

He told Cearra the other night at the hospital that as scary and hard as it was, the initial six months of his treatment were the most important days in his life.  He said “As bad as it was, some of the best memories I have with mom were when we were in Arkansas”, and I know what he means.  In Little Rock, when they were giving him daily chemo treatments and his two stem cell transplants, he and I were both totally focused on the “now”.  We were dealing with getting to the hospital every day, handling his illness and weakness every day.  There was no time to think of anything else… Just survival and “beating” the cancer…  Some of the best people we’ve ever met, we met during treatment in Arkansas…  But then you come home and you have to start living your "normal" life - and it's not as easy as it sounds.

Who would have ever thought that Tanner would have cancer?  How many moms have asked themselves that about their children? How many people ask that question about themselves or their loved ones every day? 
He may not always make the "right" decisions... Who does?  But until you've walked in his shoes, you have no idea how scared this boy is...
There is no guide book to getting through this... We just do the best we can.
The one who loves you will make you weep... Argentine Proverb


  1. dear angie,

    thanks so much for the update. i think tanner's emotional breakdown intersecting with the doctor's appt. was truly meant to be. often, PTSD is not recognized early enough for patients to receive the care and support they need. young adults want desperately to lead normal lives, fit it, and plan for the future. your darling tanner was trying so hard, but he has had such a rough road of horrific pain, both physical, and now, as the savvy and caring doctor realized, emotional pain. PTSD has a strong element of grief, and most cancer patient's with diseases like myeloma, are at some time going to feel that grief, mostly from a complex list of losses. when having flashbacks, it's like a huge wave washes over one, suddenly and with no warning - just like we experience when we've lost a loved one to death. in tanner's case he lost the person whom he knew as HIM, and also many aspects of his life before being diagnosed with MM. but with treatment and suppport he has the chance to meet the new tanner, stronger in many ways, with an enhanced ability to love, feel compassion, and treasure moments of great joy. physical pain has robbed tanner of the ability to move forward, to make a new life, and to have the chance to pick and choose what he wishes to discard from his old life and keep in the new one. some refer to this as "the new normal", but having gone through much of what tanner has, we chose to call it "life re-invented", which to us feels less clinical, less "imposed", and more chosen - alluding to life lived on personal terms, and not defined by cancer.

    now, with treatment to address tanner's physical and emotional pain, i hope you can breathe just a little sigh of relief. i know your mother's heart must ache for him, but also, from the excellent research you have done, i hope you see better days for your dear son on the horizon. and it's sure to follow - what make's tanner happy will make tanner's mom happy. do keep us posted on how you both are doing; their are legions of people cheering tanner, you and your family on.

    love, xoxo

    karen sutherland

    love, xoxo

    please know that their are legions of people cheering tanner, you and your family on to healing and finding new ways to cope with the raviges of MM so that life re-invented can be healthy and happy.

    much love, xoxo

    karen sutherland

  2. I cannot even imagine what you have gone thru with your son , except I went thru a SCT transplant in 2006. But I was 53 not 19. I think the stress and depression is real for Tanner. I hope he is better and can com e to terms with this awful deal that we've been dealt , no matter what our age.
    What helps me, is its one day at a time. This moment is all there is. My thoughts go out to you and Tanner! .

  3. :-( wow. Cancer just keeps 'giving..' doesn't it? So much that adult cancer survivors have to deal with that unaware infants don't. After reading so much, there is no better age-little ones don't understand why they are being tortured, but the older ones have different questions and fears.Cancer stinks.

  4. Angie: I can't begin to imagine the fear that Tanner must experience.

    I'm so glad he was referred to a Pain Mgmt Specialist. That doc is one of the most important members of my honey's medical team.

    We'll be in Arlington for a month in Nov/Dec ....and I would love to be able to get together with you for dinner, one nite.

    Hugs from MS.....

  5. Thinking of you and Tanner and the rest of the family as you begin the holiday season...

  6. Thinking of you and Tanner and your family during the holidays and intending this is a time of great family connections for you all...

  7. dear angie,

    i have thought of tanner and you so often - just thought i would leave a little note for you to say that i hope things are improving.

    still cheering you both on to better days,


    karen, TC (sutherland)

  8. How is Tanner doing now?

  9. Dear Angie,

    Hi, my name is Mark Barnas. I know exactly what Tanner is going thru for the most part. I have been trying for a month to get in touch with one of you guys thru facebook and he finally added me about a week ago. I am a fellow survivor of MM and was DX at age 19 and am now 26. I have been thru surgeries, radiation, chemo and all the side effects. The one thing i have not dealt with is a SCT which i am looking at within the next couple months/years. If you could please pass my information along to your son Id love to communicate with him being that he and I are the only ones i know that are below 35-40 years old. The feeling of loneliness is something ive felt for a long time due to my age difference from most of the MM community. my email is tried sending both of you guys a message on facebook but we have to be friends first so you might have my friendship request still there. Please let me know how we can proceed since Id love to talk to him and get his perspective.

    Be Well

  10. I hope you are all doing well.

  11. Hi,

    You're incredible, I wish you well.