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for his monthly appointment and could tell right away that he wasn’t in a good mood – but was, instead, quiet and withdrawn.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

Wednesday, August 22, 2012


I've been living in my own world, going to work (putting on my happy face - most of the time), coming home, going to bed.... and then doing it all over again... and again... Taking a sleeping pill at night to just get a few hours of oblivion.

Last Sunday, I decided to get out and DO something - and I went to listen to a friend's son play an acoustic session at the Cowtown Winery.  I turned my phone to silent for a few hours and spent some time "unglugged"... When I finally checked my phone, I had five missed calls from Tanner's phone - and a text message from his girlfriend, Cearra...

It was along the lines of, "Angela, Tanner was okay and we went outside and all of a sudden his back started hurting. He's been crying and screaming and I don't know what to do." I texted back at once and asked where Tanner was and my phone immediately rang, it was him, and he was crying.  He said, "I'm okay now Mom but it was the worse pain I've ever felt. I've never felt this way before"... He said " My back locked up and I couldn't move for like ten minutes."  He went on, "I'm scared mom. I think the cancer is back."  He said they had tried to call me five times, and I didn't answer.  He's used to me always answering...

I immedately went into "mom" mode.  I reassured him that there was no way this was the cancer coming back.  I told him we had just been to the doctor on Wednesday and that they had assured us that he's still in complete remission. I told him this was damage caused by the cancer - and the chemo.  I asked him if I needed to come get him and take him to the hospital and he said "no", that he was okay now... that it just scared him.  I kept calm - and hung up the phone and started crying... and crying... and crying...

Yesterday morning at 6:00 a.m. I was crawling out of bed to prepare for another work day when I got another text from Cearra saying that Tanner was in terrible pain again and that she was worried and asking that I call him when I had time. Of course, I immediately called him back and he said he was okay... that he goes days where things are all right, and then the pain comes out of the blue... in the blink of an eye...

He didn't want to go to the hospital... He just wanted to talk to me...

I talked to Courtney, at Dr. Berryman's office, and the Pain Specialist they were trying to get Tanner in with doesn't accept his coverage so they are "back to the drawing board".

Every day, every single day, I have to hear from my son.  I just have to have a text or a couple of words.  I need to hear that he's okay.  But deep down, he's never really okay.  He's hurting to some degree or another - and he's afraid.  He's afraid, I'm afraid, his brother, Trevor, is afraid, Cearra is afraid, we are all afraid to varying degrees...  Cancer is there, in the background, all the time.

I'm going to be honest here...  I know how I come across.  So "negative"... always "afraid"... always "whining"... I know how I sound... so I stopped blogging... But, I'm trying to get better and I'm seeing a psychologist.  I realized I needed help the day, a couple of weeks ago, when I got up and walked out of work.  I went home and I curled in a fetal position on my bedroom floor and I screamed and cried for hours.  I lay there on the floor and I realized I was saying, "Help me. Please help me" over and over...

Tanner came over that afternoon without calling first and he found me there... he saw me in that shape and, still, I couldn't stop.  He ended up crying too and he told me, "Mom this isn't normal. No one's nerves should do this to them".  When I calmed, I wondered how I could do that?  How I could collapse into that state and allow my twenty year old son see me that way.  I got up and emailed the psychologist and told her I needed to come in.  That it was an emergency.  I've had appointments the last two weeks and I've been completely honest with her.  She says I'm in a "bad place"... that they need to "stabilize" me... that it's not going to be easy... that's it's going to be a "long process".  She said my "screams" when I broke down that afternoon is called "keening"... and that it's grief...

How I've felt - and have been feeling - for a long time now - it's not something I chose.  I don't want to feel like this.  As I told the doctor yesterday, I'm not "this way" all the time.  I get up, put on my clothes and makeup.  I go to work and do my job.  I smile and laugh and talk... and deep down, I'm just surving.... I'm waiting on the next catastrophe.  Life has taught me that it's one disaster after another since I was the age of 15 when my oldest brother was killed... then my mom, my dad, my youngest brother, my memaw, my aunts and uncles, my young cousin...  I'm just waiting... and I don't want to BE this way.

I didn't know what it meant when the doctor told me I needed to be "stabilized" until I read this article today.... How I've felt, have been feeling for a long time now...  This isn't a choice. 

I've sought help and I'm trying to get better.  The psycholoigst is the first one I've talked to who seems to truly truly understand.  She makes me realize I'm not completely crazy.  I'm not just some weak negative person.  I have a very real problem.

I have to be better for my sons, but none of this has been easy.  Most people have no idea...

I'm not an easy person, I know that... I know it often feels like a one way street...

I'm sure tomorrow is going to be a better day.  I'm trying to find "life" and not just "existence".

Page 1 of 3 22/08/2012 15:11 PM
Sharing experiences with depression can be helpful to others enduring the same thing, says

Kat Kinsman.
Going public with depression -
By Kat Kinsman , CNN

updated 3:06 PM EDT, Wed August 22, 2012

Politicians Jesse Jackson Jr. and Patrick Kennedy have each recently revealed struggles with depression and mental illness. After the death this week of "Top Gun" director Tony Scott in an
apparent suicide (it's unclear whether Scott suffered from mental health issues), CNN's Kat Kinsman writes that talking freely about personal mental health issues and suicidal thoughts, whether you're a public figure or a private person, can help those who share the struggle.

(CNN) -- I am 14 years old, it's the middle of the afternoon, and I'm curled into a ball at the bottom of the stairs. I've intended to drag my uncooperative limbs upstairs to my dark disaster of a bedroom and sleep until everything hurts a little less, but my body and brain have simply drained down. I crumple into a bony, frizzy-haired heap on the gold shag rug, convinced that the only thing I have left to offer the world is the removal of my ugly presence from it, but at that moment, I'm too exhausted to do anything about it.

I sink into unconsciousness, mumbling over and over again, "I need help... I need help... I need help." I'm too quiet. No one hears.

Several months, countless medical tests and many slept-through school days later, a diagnosis is dispensed, along with a bottle of thick, chalky pills. There is palpable relief from my physician and parents; nothing is physically wrong with me (thank God, not the cancer they've quietly feared) -- likely just a bout of depression. While it helps a little to have a name for the sensation, I'm less enthralled with the diagnosis, because I know it will return. While this is the first time it's manifested heavily enough for anyone else to see it, I've been slipping in and out of this dull gray sweater for as long as I can remember.

What doesn't help at the time are the pills: clunky mid-1980s tricyclic antidepressants that seize up my bowels, cause my tongue to click from lack of moisture, and upon my return to school cause me to nearly pitch over a third-story railing from dizziness. I flush the rest and, mercifully, no one bothers me about it.

If they do, I probably don't even notice; my brain is too occupied, thrumming with guilt, stupidity and
embarrassment. Nothing is physically wrong. It's all in your head. This ache, this low, this sickness, this sadness -- they are of your making and there is no cure.

Now, 25 years later, I've lost too much time and too many people to feel

any shame about the way my psyche is built.

How from time to time, for no good reason, it drops a thick, dark jar over me to block out air and love and light, and keeps me at arm's length from the people I love most.

The pain and ferocity of the bouts have never eased, but I've lived in my body long enough to know that while I'll never "snap out of it," at some point the glass will crack and I'll be free to walk about in the world again. It happens every time, and I have developed a few tricks to remind myself of that as best I can when I'm buried deepest.

The thing that's always saved me has been regular sessions with an excellent therapist and solidarity with other people battling the same gray monster (medication worked for me for a little while -- I take nothing now, but it's a lifesaver and a necessity for some). When I was diagnosed, it was not in an era of Depression Pride parades on the main street of my small Kentucky town. In 1987, less than one person in 100 was being treated for depression. That had doubled in 1997, and by 2007, the number had increased to slightly less than three.

My friend Dave was part of that tally. We met in our freshman year of college, and he was one of the loudest, funniest, most exuberant humans I'd ever met -- and the most deeply depressed. Not that anyone outside our intimate circle knew; like many of us who live with the condition, he wore a brighter self in public to distract from the darkness that settled over him behind closed doors. Most people don't see depression in others, and that's by design.

We depressives simply spirit ourselves away when we've dimmed so as not to stain those who live in the sun.

Dave saw it in me, though, and I in him; and for the first time in my life, I felt somewhat normal. Like I didn't have to tap dance, sparkle and shine to distract from the fact that I was broken. I could just be me, and that wasn't a half-bad thing in his eyes. I began to tell more people as plainly as I did other facts of my being -- I was born in New Jersey, my real hair color under all this pink dye is very dark brown, and I've suffered from depression as long as I can remember. I'm Kat -- nice to know you.
Dave never made it that far. His cracks were too deep and dark, and he poured so much vodka down into them to dilute the pain. A year after graduation, in the late summer of 1995, I was unsurprised but thoroughly gutted when I got the call -- Dave had tidied his apartment, neatly laid out a note, his accounts and bills, next to checks from his balanced checkbook, and stepped into a closet with a belt.
I see Dave in little flashes all the time, still -- hear his braying OHMYGAAWWWDD laugh around a corner and see his handsome gap-toothed smile in a crowd. I want to smack him full across the face for giving up and leaving us all, and I want to drag him to a computer and sit him down: Look -- we're not alone.
Dave was the first person I ever knew with Internet access. Among a million other things I wish he'd lived to see is the community of souls online, generously baring and sharing their depression struggles with strangers. There's no substitute for quality therapy (in whatever flavor you take it) or medication (if that's your cup of homeopathic tea), but by God, it's hard to get there.

To see your feelings echoed and normalized in essays like comedian Rob Delaney's much-forwarded "On Depression and Getting Help"; author Stephen Fry's legendary letter to a fan, "It will be sunny one day"; the ongoing, public struggles of widely read bloggers and authors Dooce and The Bloggess; and guests of the no-edges-blunted WTF Podcast from comedian Marc Maron -- all highly successful and public people -- is to dare to let a crack of blue sky into the basement where you've been tucked away. I can barely imagine what it would have meant to my 14-year-old self to read Delaney's words: "The sole reason I've written this is so that someone who is depressed or knows someone who is depressed might see it. ... But after having been through depression and having had the wonderful good fortune to help a couple of people who've been through it, I will say that as hard as it is, IT CAN BE SURVIVED. And after the stabilization process, which can be and often is f**king terrifying, a HAPPY PRODUCTIVE LIFE is possible and statistically likely. Get help. Don't think. Get help."
 Or Fry's:
"Here are some obvious things about the weather:
It's real.
You can't change it by wishing it away.
If it's dark and rainy it really is dark and rainy and you can't alter it.
It might be dark and rainy for two weeks in a row.
It will be sunny one day.
It isn't under one's control as to when the sun comes out, but come out it will.
One day.
It really is the same with one's moods, I think. The wrong approach is to believe that they are illusions. They are real. Depression, anxiety, listlessness -- these are as real as the weather -- AND EQUALLY NOT UNDER ONE'S CONTROL. Not one's fault.
They will pass: they really will."
Dave will never see those words, or these, but someone will -- including the 14-year-old me who still sometimes rides shotgun as I'm driving through a storm. I show her these words, these essays, these poems, these podcasts beamed out by the other souls who glitter out in the darkness. And I take her hand and lead her up the stairs.


Saturday, August 11, 2012


I went this last weekend to Paris with my cousin to see my Uncle Little Boy, Aunt Tincey, and Aunt Onvie and I was scolded for not posting any updates to the blog. I was told that I left them hanging not knowing what happened after the upcoming doctor visits. So, Aunt Onvie-Aunt Tinsey, this is for you...

Tanner has been pretty sick to his stomach. For months there he could barely eat. He would take a couple of bites and that's all he could get down. He lost weight, when he really didn't have much room to lose weight to start with. He got circles under his eyes, his back was hurting and he was having muscle spasms, he became listless and had no energy. He wasn't happy... he was just surviving.

Dr. Berryman told him that it was good that he's maintained remission for so long - but that he needed some quality of life also.  So, they stopped chemo treatments, and they stopped the Revlimid, and Tanner has been pretty much medicine free for around three months now... and he's feeling so much better.

Wednesday we went back to Dallas and his labwork all looks great.  Dr. Berryman told him about a new "velcade" that has just been approved but that it's more for those with active cancer and is an IV treatment that is undergone twice a week. Tanner just waived any thoughts of having twice weekly chemo treatments again away and said "No thank you". Dr. B told him that he agreed that aggressive treatment isn't needed anymore, at this time, but that he "doesn't  want to lose the ground that has been gained" and they have started him back on his Revlimid.

Tanner goes back in a month and they will see how he's done on 25 mg Revlimid.  The doctor said if he has any issues, they could always adjust the dose.

So, at this point, Tanner just has to take his antibiotics, stomach medicines, and Revlimid and go to see Dr. Berryman once a month. He's very relieved that he doesn't have to go to the Oncologist office here in Fort Worth every week anymore. 

They did refer him to a pain specialist in Fort Worth so he'll have to make an appointment there and see if this doctor might be able to assist him with some of the pain in his back and legs.

As for me, let's just say, I'm still here - and that I've found I'm not as strong as I thought.. hoped... I was...  There are things I would like to change, need to change, about me, my life, and how I handle things... but I haven't been able to do a thing to change anything about my own life... I've struggled, to put it mildly. I have an appointment with a psychologist next week and I'm going to try and do what I need to do to follow through helping myself.

So, Tanner is in full remission and doesn't have to take chemo treatments anymore. He just has to take his maintentance medications (Revlimid, stomach medicine, pain medications, etc...) and follow up with the doctor once a month. He and Cearra are still very very much in love. He's going to be okay!

There are four questions of value in life... What is sacred? Of what is the spirit made? What is worth living for, and what is worth dying for? The answer to each is the same. Only love... Johnny Depp

Monday, June 4, 2012

Thank you

I'm going to take a break from the blog for a while... Seek some healing on my own.

Thank you for the support the last three years. I couldn't have made it this far without you all...

We are all broken and wounded in this world. Some choose to grow strong at the broken places...

Friday, June 1, 2012

Two Week Break

Tanner goes to chemo every Friday and then actually see's Dr. Asad Dean (or his PA Mark) once a month at Texas Oncology in Fort Worth.  Today's appointment was the once monthly appointment with the doctor - but we ended up seeing Mark since Dr. Dean is out of town.

Tanner explained to Mark about the progression of his symptoms - the added problem of the muscle spasms in his arms and legs in addition to the back pain - and then he also talked to him about the fact the he's started "jerking" more and more when he's sleeping (and sometimes when he's sitting at rest and doing things like playing video games).  His body will just jerk...  I noticed it myself when I was driving him back and forth to his appointment with the Orthopedic Surgeon over in Dallas last Friday.

Mark told him that he truly feels like the majority of all of these issues are being caused by the chemo medications - most especially the Velcade.

We discussed the fact that Dr. Berryman had said a few months ago that since Tanner is handling the maintenance chemo so "incredibly well", he saw no need to change his treatment at that time... but now that Tanner is having all these issues - back pain, leg and arm muscle spasms, increased stomach acid - he thinks it's time to consider possibly changing things up a little bit.

He asked Tanner on a scale from 1 - 10 (with ten being severe, almost intolerable pain, and one being minimal) how he would rate his "average" daily pain.  Tanner told him around a 6-7.  Mark told him that was a high enough pain threshold that he thought it was time to consider some other treatment alternatives.

He told him that "maintenance" treatment is usally a lower dose of velcade every two weeks - but instead Tanner has been taking a full dose every week for 2-1/2 years.  He said that the doctors might consider lessening the dose, moving the appointment to every two weeks instead of every week, or that they could even consider stopping the velcade all together and just treating Tanner with the Revlimid (which he has been taking in addition to the chemo).  He explained that there are no proven "protocols" verifying that the continued maintenance chemo results in a longer remission period than just the maintenance drugs by themselves but that they are treating many many people with the chemo - revlimid combination to see if it results in a longer cancer free period. 

Tanner said something about being an "experiment" and Mark told him that, yes he was "to a degree" along with "many other Multiple Myeloma patients" around the world.

He went ahead and cancelled the chemo treatment that was scheduled for today and told Tanner to come back next Friday for his chemo appointment like usual - and we will also see Dr. Dean that day and discuss what has been happening. He told Tanner to pay special attention this next week to determine how he feels and see if he notices any difference in his pain level and discomfort after skipping this week's chemo treatment.

He has an appointment with Dr. Berryman, his main Oncologist, in Dallas next Wednesday, so we'll also discuss all of this to him at that time and get his input.

Tanner was quite relieved to have a break.  He has chemo every Friday and then doesn't feel very well for a few day following the appointment.  Then he starts feeling a little better, only to have the next week's treatment and the whole process starts over again.  The idea of a two week break really appealed to him - though I could tell he was concerned when Mark mentioned the possibility of stopping chemo treatments all together.  Tanner told him the idea of stopping chemo "wasn't completely insane" but that he wants to do what the doctors feel will be best.

He, Cearra, and Trevor all plan to go out to Hurricane Harbor this weekend and have a day playing on the water slides.  Hopefully, after skipping this week's chemo, he will  have a fun day soaking up some Vitamin D and just having fun!

Me, myself, I'm hanging in there...  I worry about my boys all the time, but I've had my personal life under control for a while now and I'm truly living in the moment. How can you enjoy today if you're always worrying about tomorrow? That's saying a lot for me...

Keep love in your heart. A life without it is like a sunless garden where the flowers are dead. The consciousness of loving and being loved brings a warmth and richness to life that nothing else can bring... Oscar Wilde 

Monday, May 28, 2012

Struggling A Little

So... Tanner has been struggling for a few weeks now...

We went out to eat Saturday evening with Granny Jane and Pop Jerry and he could only get down a few bites of his food - and he ended up in tears.  Granny could hardly stand it and was asking him what was wrong... feeling to see if he had fever... asking if he's been eating... and you could tell she just wanted to "fix" what was wrong with him. The thing is, there's nothing we can all really do but support and love him, try to take care of him to the best of our ability, and pursue some help from the doctors.  He finally admitted to her that he is "worried"...

I can only imagine what it's like to be twenty years old and have Multiple Myeloma... To have bones that ache on a daily basis. To have the specter of dealing with this for the rest of his life.

I can't help but feel that a large part of what is happening to Tanner (back pain, arm and leg muscle spasms, and nausea) are side effects of the chemo treatment that he's been receiving for three years now.  When he was in Arkansas, Dr. Barlogie would give him "chemo breaks" every once in a while - whether it was a few days or, occasionally, a couple of weeks.  Since he's been under the supervision of Texas Oncology (and not MIRT), he hasn't had any kind of break in well over a year now...

I reached out to him yesterday to see if he was feeling any better and he told me "not really"... His body hurts, he's nauseous, and he's worried...  Today he texted me that his collarbone is feeling "weird" and he wanted to know when his next appointment with Dr. Gilbert (the Orthopedic Surgeon who put the rod in this left tibia and his right hip) is and I told him that it's tomorrow afternoon. He said, "Good, I have some questions for him".  In addition to that appointment, he sees Dr. Dean at the Fort Worth Texas Oncology this coming Friday - and then Dr. Berryman in Dallas the next Wednesday.  We both have some questions for all of these doctors.

After going out Saturday evening and sitting across the table from him and observing as he tried to get down a few bites of food - and then watching as he finally just sat there next to his Granny and cried... my heart just aches.

Like Granny, I want to "fix" him... to take the hurt... the worry... away...

I came home and crawled into bed and the thoughts just swirled around and around in my head... and sleep was almost non-existent... 

The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him...Pablo Casals

Wednesday, May 23, 2012

Side Effects

I kept trying to contact Tanner yesterday and finally ended up texting Cearra's mom last night and asked what was up.  Tanner knows that I need to hear from him by afternoon each day or the mom panic starts to set in (this is a side effect of not only the cancer - but years of raising young boys).

She replied that he'd been sick in bed most of the day and she would have him contact me.  He texted that he was vomiting stomach acid and had spent the majority of the day in bed. We went back and forth about taking his nausea medicine and then he said that he's experiencing muscle spasms in his arms and legs now.

I'm beginning to believe that the majority of Tanner's pains are a side effect of the chemo medications that he's been on for three years now.  I Googled velcade today and muscle spasms, back pain, and pain in the extremeties are common side effects (not to mention the nausea).

Tanner has chemo this Friday, an appointment with the Orthopedic Surgeon who did the surgeries on his legs next Tuesday, an appointment with Dr. Asad Dean (the Fort Worth Oncologist) Friday June 1st, and then his monthly appointment with Dr. Berryman in Dallas on Wednesday June 6th. 

Hopefully, between all these physicians, someone will have some suggestions about how to get his discomfort under control.

Up to this point, no one has responded to any of my messages...  Discouraging, to say the least.  So, my plans are to have this addressed by next week.  I'm actually really looking forward to seeing Dr. Gilbert on Tuesday (even though he's all the way on the other side of Dallas and that drive is NO fun). I'm hoping he can give us some insight about Tanner's back.

I'm afraid all these years of chemo are beginning to catch up with Tanner's body.

Last night, I was going through the closet moving stuff around preparing a space to put some shelves in there and ended up sitting on the floor going through the boy's photo albums.  I was looking at their sweet faces and considering all the twists and turns our lives have taken.  I looked at the innocent smile on Tanner's face on so many of the photos and couldn't help but think none of us had any idea what life had in store..

If we can get Tanner's pain and discomfort addressed, things seem to be going well for everyone right now.  He's still very much in love with Cearra - and she with him, Trevor seems to be finding some mental peace, and my life is going well.  I've been able to just settle down for the last couple of months and live in the happiness of the moments... to put aside worry of the future... of the "what if's" and just live for now. I've gained a level of contentment I haven't felt in a long time. I'll face tomorrow... tomorrow... Today is good.

I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - HOPE always triumphs over experience - laughter is the cure for grief - and love is stronger than death... Robert Fulghum

Friday, May 18, 2012

Treatment Evolution

I still haven't heard back from any of the doctors... so still no pain management... I actually think I'm going to reach out to Dr. Albritton (from Cook Childrens) today and ask her if she has any suggestions.  She told me to let her know if there was ever anything she could do for us. Hopefully she knows of some back doctors who take Medicaid here in the Fort Worth area.

Tanner is hanging in there and, other than the back spasms, seems to be doing well... Still very much in love with Cearra and just living life.

I receive the MMRF newsletter and thought I would share a couple of the abstracts from the one I received this past week:

Novel therapeutics in multiple myeloma:
Most myeloma patients still experience recurrent relapse and eventually become resistant and/or intolerant of effective agents such as corticosteroids, alkylating agents, immune modulators (lenalidomide and thalidomide) or proteasome inhibitors such as bortezomib. Once this happens average survivals are less than one year. Progress has been made for such patients, however, with the demonstration of clinical benefit of novel proteasome inhibitors (carfilzomib) and immune modulators (pomalidomide). Pomalidomide when used with dexamethasone has activity in 30-60% of patients depending on disease stage. Carfilzomib is an irreversible proteasome inhibitor with favorable toxicity profile (minimal neuropathy) and response rates of 17-54% depending on the disease stage treated. Novel targets are also being explored. Histone deacetylase inhibitors such as vorinostat and panobinostat are in phase II testing although results from a randomized trial combining vorinostat with bortezomib were disappointing. Other small molecules or monoclonal antibodies with novel targets such as kinase inhibitors(AKT, CDK5) and cell surface receptors (e.g. elotuzumab) are undergoing active investigation.

Every time we go and see Dr. Berryman in Dallas, he talks to us about how MM is a "relapsing" cancer and that he doesn't know how long they are going to keep Tanner on "maintenance" treatment.  He explains that as long as he is tolerating treatment so well, they see no reason to stop chemo any time in the near future and he goes on to explain that new medications are going to be available by the end of the year - which will be beneficial if Tan ever becomes resistant to the maintenance he's been on for the last 2-1/2 years.

Multiple myeloma: treatment evolution:
Melphalan-prednisone (MP) was introduced for the treatment of MM in late 1960s. In the subsequent 30 years, the treatment improvements remained stagnant, since more complex chemotherapy combinations, such as vincristine, doxorubicin, and dexamethasone (VAD), or with the addition of BCNU (VBAD) or melphalan and cyclophosphamide (VCMP), only led to small increases in the overall response rate but without differences in survival, as assessed in a large meta-analysis that included over 6000 patients. The next step forward was the use of high-dose melphalan followed by stem cell support (autologous stem cell transplant - ASCT) for young myeloma patients, which resulted in a significant improvement in disease free survival and overall survival. However, for elderly patients MP remained as the standard of care. From year 2000, a revolution in the treatment armamentarium of MM has emerged with the availability of new agents with singular mechanism of action such as thalidomide and lenalidomide (Revlimid®), both immunomodulatory drugs and the proteasome inhibitor bortezomib (Velcade®).

The high dose melphalan followed by stem cell transplant with subsequent thalidomide - Revlimid treatment discussed in the abstract above is the treatment that Tanner received in Arkansas...the treatment that his insurance company denied coverage for stating that it was "not standard".  Thank goodness Dr. Barlogie proceeded with care for Tanner with this cutting edge treatment - even knowing that payment was being denied. He never hesitated and never delayed in his care of Tanner no matter what the insurance company said. He had to have known that there was very little chance they would ever be able to collect the hundreds of thousands of dollars in bills that were being built up... even if I make payments the rest of my life... but he never ever hesitated...

He is truly one of mine and Tanner's heroes...

Love knows no limit to its endurance, no end to its trust, no fading of its hope, it can outlast anything. Love still stands when all else has fallen...

Thursday, May 10, 2012

Pain Management

Do you have any idea how hard it is to know your child is hurting and you can't ease that pain? I want to just take it away... take it all away... and I can't.  I can't do anything but call doctors and try to push them to get him in with a pain specialist.  All I can do is research on the internet and try to find someone to help him...

Dr. Berryman referred us to a Back and Spine Orthopedic Surgeon in Dallas (who works specifically with cancer patients) whom I've called several times this past week.  I finally got through to someone yesterday, only to learn that they don't accept Medicaid patients.  She said the only Oncology Orthopedic surgeon she knows of in Dallas is Dr. Gilbert (and his partner in the practice).  I explained to her that Dr. Gilbert is the doctor who performed the surgeries on Tanner's legs, but that Dr. Berryman said he wanted Tanner to see someone who deals specifically with back issues.  She just kept apologizing.

I emailed Dr. Berryman and his assistant, Courtney, yesterday to let them know what's going on - and in the meantime I've started searching the web trying to just find someone over here in Fort Worth.  I started thinking about Dr. Maymie Richie-Gillespie (who diagnosed Tanner three years ago) and it came to me that she's a Musculoskeletal Specialist who deals with cancer patients all the time - and she works with young people (through Cook Children's Oncology Department).  I called her adult practice yesterday and asked if they accept Medicaid patients and the receptionst told me that she did only through her JPS office.

I've called that office and left a message on their answering machine explaining that Dr. Richie-Gillespie is the one who diagnosed Tanner three years ago and that he now has a compression fracture in his back and that we need to see if we could get him an appointment.

Today, I've received a text from Tanner telling me, "My backs hurting quite more today for some reason. It's just a lot spasms".

If you have a child, then I'm sure you realize how that makes me feel.  It doesn't matter that he's 20 years old... He's my baby and he's hurting and I can't "fix" it... So, I called the JPS office again and left another message. I told her "You know how us mothers are. My son is hurting and I need to find someone who can help him."  Now I just wait for someone to answer me.

Three years ago, when he first broke his leg (and the tumor was discovered in his tibia), it took three weeks to get into Dr. Richie-Gillespie's office.  I can only imagine how long it will take to get him into their JPS office.

I know that Tanner has cancer.  I know that he's going to have to deal with that fact - and the pain - for the rest of his life.  I just want this addressed.  I want them to do everything they can to give him as much relief as is possible.

I love Dr. Berryman.  When we are in his office, you can tell he really cares.  He will sit and talk with us and he takes Tanner seriously and he wants to give him the care he needs.  When we were there over a month ago and talked about Tanner's pain problems, he told us he's going to look for a Pain Management Specialist - and was going to try and find someone who works with young people.  Then after Tanner had the MRI and we went to find out the results (and learned of the compression fracture), I asked him if he had looked for a pain specialist for Tanner and he looked sheepish and said "no".

I know these doctors are busy.  You sit in the waiting room and see dozens upon dozens of cancer patients sitting all around you and you realize that Tanner is just one of many... but he's my son... and I see his pain... and I don't want him ignored.

I texted one of my cousins yesterday and told him I was fighting depression, and I didn't know why.  I asked how can I be fine one day and fight despair the next?  There's no reason for me to be feeling depressed... everything is fine in my own personal life... I guess it was just a bad day.

It's ok... this is our life... I just want my son to be as comfortable as possible.  I'm sure we'll get an appointment with someone and they'll be able to help Tanner, and it will all be okay.  I'm just a mother.

The greatest happiness of life is the conviciton that we are loved; loved for ourselves, or rather, loved in spite of ourselves... Victor Hugo

Friday, May 4, 2012

Compression Fracture

I took Tanner to see Dr. Berryman in Dallas on Wednesday and we got the results of his MRI. 

He has a compression fracture of one of his vertebrae with 10% height loss. 
Dr. Berryman said that he’s sure it’s contributing to Tanner’s pain, but that he doesn’t think surgical correction will be necessary.  He also said that because the pain Tanner feels in his back isn’t limited to strictly the spine area, he doesn’t think the pain is caused entirely by the fracture.

He’s recommended that Tanner see another Orthopedic Surgeon, Devish Ramnath, in Dallas to get his opinion for treatment – and thinks that, possibly, some nerve stimulation, back exercises, and physical therapy could be beneficial.  I’ve left a message for Dr. Ramnath and, hopefully, we will be able to get Tanner in to see him in the near future.

We went today to Dr. Asad Dean’s office and his PA, Mark Davis, was asking about the MRI.   He seems to feel that the majority of the pain Tanner is experiencing in his back is most likely caused by all the chemo medications and explained that Velcade causes muscle damage (which Tan has been on for almost three years now).

Tanner has shown so much patience through all these years of treatment, but you can tell, sometimes, that this persistent pain is wearing on him – as are all of these treatments – and he starts to lose some of that patience. 

I texted my boss this morning to tell him we were running late at the doctor’s office, and he replied that we have “been on this journey for such a long time”.  My response was that this was what Tanner was going to have to deal with for the rest of his life.  Thankfully, all of this treatment has kept him in remission for 2-1/2 years… but eventually, all of these drugs start to catch up with your body.  None of this has been easy…

On a personal note, I started yoga a month ago and have been meeting my friend, Donna, in Burleson on Monday and Wednesday evenings.  It has been wonderful!  My body and mind feel so much better!! 

The stress builds and builds and manifests itself in my muscles and after an hour of yoga, I can feel the difference in the tension in my body.  I’m learning to relax and stretch all areas of my body… and also my mind. 

These last few years I’ve allowed myself to stress and become absolutely miserable over things I have NO CONTROL of…  I’m learning to let go and live in the moment… and I’ve had good moments this week.  That’s a start…

He who has a why can endure any how…
Friedrich Nietzsche

Friday, April 27, 2012

The More Things Change

I know that I must sound like the most miserable sad person... and I'm really not. I just struggle with the burdens sometimes.

There's so much positive in my life. For every "burden" or "negative" - there's also something wonderful and good.

Even though my sons sometimes struggle and make mistakes, the love I feel for them and they feel for me is unending and without hesitation. For all the times I feel alone in this world because of the family and loved ones I've lost, I have friends who have become the best family anyone could ever wish for.  I have loved without reservation.  I have two of the most beautiful grandchildren in the world and simply looking upon their faces fills my heart with happiness.  I have much to be grateful for.

No matter what tomorrow brings, I've had a depth of love in my life that many people in this world will never experience.

My world was knocked off it's axis and any level of stability was taken away from me and I've been on a path that's gone in circles for a few years now.  Like a merry go round... you think you're making progress and you look up and you're back where you started.  I've seen what I need to do and have tried to change directions... incorporate more people and options into my world... to find another purpose and reason for my life... It's just hard... sometimes....

Ah, is it just me or does anybody see
The new improved tomorrow isn't what it used to be
Yesterday keeps comin' 'round, it's just reality
It's the same damn song with a different melody...

The more things change the more they stay the same

You know the more things change the more they stay the same
The same sunrise, it's just another day
If you hang in long enough they say you're comin' back
Just take a look, we're living proof and baby that's a fact
You know the more things change the more they stay the same
Never and forever just keep comin' back again
Don't hold out for tomorrow or hold onto yesterday
The more things change the more they stay the same...

Jon Bon Jovi-Richard Sambora

Sunday, April 22, 2012

I Got a Little Bit Stronger

Tanner had his MRI last Wednesday and now we just wait to talk to the doctor and see what they have to say.  His next appointment in Dallas is May 2nd.

He, Cearra, and Trevor stayed with me Thursday and Friday night and we had quiet family time.  Those days are few and far between these days so I enjoy them when I can. When I had those boys I had no idea what was in front of me. The type of person I am, the worry I feel can be overwhelming. You never ever consider when you have those sweet babies that they are going to have to face their own demons, and you will be right there beside them - facing your own demons.... but this weekend was a good weekend with my boys. One that can sustain me for a while...

I continue to search for a "life" for myself as my boys move on with their own lives... I went to my friend Sandy and James' house for dinner Saturday night. They've been my close friends for around thirty five years now... We had dinner, a walk to the park, and wine on the patio. What a beautiful night...

Today I went to church, came home and worked in my flower bed (with the butterflies all around me), and then dinner in Burleson with my friends Donna (another best friend for nearly 35 years now) and Paul.

Isn't it amazing how when others walk away, it's the family of your heart, those that you chose & that chose you, that's always there no matter what? 

I thought it was going to be a bad weekend... I had bad moments Friday... Sometimes, it's more than I can stand and I don't know how I'm going to make it to the next day... but I always do... I always make it to tomorrow.  All in all it was a good weekend. I think I'm going to be okay.

Woke up late today and I still feel the sting of pain.
But I brushed my teeth anyway.
I got dressed through the mess and put a smile on my face.
I got a little bit stronger.

Tuesday, April 17, 2012

When Life is Hard, You Have to Change

The pain in Tanner's back continues... and now he's having numbness in his fingers.  Three years of chemo, I'm sure, is beginning to catch up with my boy.  We head to Dallas tomorrow for an MRI of his spine and I guess we'll see what they say.

When you feel your life ain't worth living
you've got to stand up and
take a look around you then a look way up to the sky.
And when your deepest thoughts are broken,
keep on dreaming boy, cause when you stop dreamin' it's time to die.

And as we all play parts of tomorrow,
some ways will work and other ways we'll play.
But I know we all can't stay here forever,
so I want to write my words on the face of today.
and then they'll paint it

And oh as I fade away,
they'll all look at me and they'll say,
Hey look at him and where he is these days.
When life is hard, you have to change.

Wednesday, April 11, 2012

A Milestone Approaches

Tanner is going to be twenty this Saturday.  It's hard to believe... Twenty years old...

It's also hard to believe that it's been nearly three years since we discovered he has Multiple Myeloma. On one hand the time has flown and on the other, it's seems like forever.

So much has happened. Good and bad - for him and I both.  He's gotten a girlfriend, moved out, gotten engaged... and I still have to hear from him every day.  At least a text, if not a call.  If I don't hear from him by 1 - 2 p.m., I send a text, "Are you okay today?"  He was telling the doctor about that daily text just the other day.

It's not easy to be a mother... but the love, more than anything, is so overwhelming.

He and I both leaned on each other so heavily while we were in Arkansas those first six months after his diagnosis.  Then we came home back to Texas, only to find that the lives of those we counted on had progressed on without us...  The girl he had started dating right before his diagnosis, loved ones, family, friends... Things change... Life continues...

We are all finding our way.  I'm ready to be happy... I'm tired of being sad... So very tired...

The manner in which one endures is more important than the thing that must be endured... Dean Acheson

Sunday, April 8, 2012

Happy Easter

I'm listening to the sound of rain outside my window and am going to try and sit down and write for a few minutes, though I'm still not much in the mood right now...  My Aunt Onvie told me when I was last in Paris that I needed to post more often, so here goes.

I took Tanner to Dallas last Wednesday and we saw Dr. Berryman, Tanner's main Oncologist. Tanner was the last patient of the day and the doctor spent over an hour and a half just sitting and talking with us.  He told Tanner that he knows he's had "issues" in the past and he told him that he didn't care, and then he backtracked and said that wasn't true, he cares - but he's not going to judge.  He went on to explain that on the other hand he wants to have an honest open relationship based on truth and trust.

What Tanner has run into is the fact that he has exhibited addiction to the pain medications in the past few years so everyone is hesitant to "go there" with him at this point in time.

I explained to Dr. Berryman that I might be the "gullible mother" but that I've been watching Tanner for months now and I see things when Tan isn't even aware that I'm watching and that I truly believe there is something going on with my son's back.  He gives in to the pain and I hear him groan when he gets up and down from a sitting position.  When he's at my house he's gotten cushions off the couch for support when he's sitting at the kitchen table, and he went out and bought a support pillow to put behind his back when he's watching television - or is just sitting around the house.  I've seen him cry - and Cearra has told me about him being reduced to tears from the pain in his back when they've been out shopping and they've had to come home.

I just don't think Tanner could carry on such a long standing act simply to seek pain medications - and Dr. Berryman said that he agreed with me... that he could tell simply by Tanner's body language that he was in discomfort. 

He had Tanner stand and he ran his hand up his back and Tanner flinched and told him that where the doctor was touching was where the majority of the pain is originating from.  Dr. Berryman told him it could be from the ongoing Velcade treatment he's been undergoing for three years that's now causing the pain - or it could be "something" in the bones caused by the Multiple Myeloma.  He explained to us that where Tanner seems to be experiencing the pain is along the spinal column and if "something" is going on, it could cause paralysis and he's going to schedule an MRI so that he can see exactly what is happening in the bones.

In the meantime, he's going to take over the "pain management" for Tanner himself until he can find a real pain management doctor who is familiar with pain, multiple myeloma, and young patients - and we are going to have to start going to Dallas once a month to see Dr. Berryman himself instead of seeing a regular Oncologist in Fort Worth.

He prescribed Fentanyl patches again that Tanner is to wear for three days at a time.  I am keeping the patches in my posession and am giving them to Tanner when it's time to change them out - and we are putting the used patches in a bag to be taken back to Dr. Berryman in Dallas when we go back to see him once a month. In this way, Dr. Berryman hopes to build a relationship of trust and can give Tanner the relief that he needs from the ongoing pain he seems to be experiencing.

Tanner put the first patch on Wednesday night after the doctor's appointment and I saw him again on Friday when I took him to his weekly chemo appointment and the difference was like night and day from the way he has been for weeks now.  He was in a good mood and said the pain was down to a "dull ache".

So... at this point we are waiting to hear when the MRI is scheduled and Tanner seems to be more comfortable... 

We were also told that Trevor is NOT a stem cell match so, if Tanner ever relapses, a sibling donation will not be an option.  Tanner cried when he was given that information and I had to remind him that he has thousands of his own "clean" stem cells stored in Arkansas at UAMS.

It's been an emotional week seeking the help that Tanner seems to need for the pain - while on the other hand dealing with the issues caused from the fact that he has become addicted to pain medications over the last few years.  We just have to have faith that it will all work out in the long run.

I went to the lakehouse this weekend for a few days of rest, relaxation, and contemplation.  It was a much needed break.  Happy Easter.

The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope... Barbara Kingsolver