Reconstructing The Past

Jack is starting therapy soon to address the post-traumatic stress issues that are causing us all concern. The short term goal is to address the  needle phobia associated with it, which is more accurately described as a “lab-induced panic spiral,” but ultimately he has a LOT of anxiety that controls him and if we could ease that even a little bit, I’ll consider it a WIN.

There are a lot of forms to fill out when you go to any sort of specialist, so I’ve filled out so many pages my hands have gone numb and started aching (seriously). Forms for the IEP evaluation, forms for the neuropsychological evaluation, forms for the ADHD assessment, and now forms for this new therapy.

They are all similar, but different. They all include questions about the past – and this is where I pat myself on the back for keeping records (something I’m less good about with Desmond – arg!) about Jack’s younger years. I have my blog, a baby book, the CaringBridge journal, and many, many pictures. I use all of these things to answer the endless questions and reconstruct the past because my own memory is full of emotion, which can often be difficult to explain in words.

I’ve spoken with the oncology team, the social worker, the child life specialist, several therapists, and all of Jack’s other parents (of course) about the best way to move forward and address this issue. I’m the collector of information and the main distributor. Perhaps this is because I’m a writer, or because I’m a mother, or some combination of things. It’s a little bit odd that it’s me in this role, though, because my memory in general resembles swiss cheese – some memories are perfectly in tact and others are just GONE. Still, it’s up to me and somehow I’m making it work.

This whole Leukemia business started with some general sickness and then a blood test. That blood test was traumatic – for me and Jack. He was 5 and had never had one done. He had never liked needles, but he didn’t spend a lot of time thinking about them…until that day when I had to hold him down and lock my legs around him in order to keep him still for the lab tech to insert the needle (note: always ask for a pediatric phlebotomist for your child!).

I know intellectually that he screamed and cried but I don’t have a specific memory of that part – that part of my inner film is a gaping hole. Holding down my screaming child while he was being hurt was too horrible to remember clearly, so I locked it up and threw away the key.

That night, Jack had his first night terror. I’d never seen one before (in Jack or in anyone) and it scared the crap out of me! I thought it was a seizure. I didn’t connect it to the blood draw at all, even though I knew the blood draw had been traumatizing. I wasn’t thinking very clearly at the time, after all.

But I’m thinking clearly now (mostly). And after filling out a ton of questionnaires and recounting all of the methods we’ve tried and reading over various records of that time when Jack was diagnosed and having witnessed several night terrors (that are pretty much always the same – screaming, thrashing, pleading “No no no no no! Mom! No!”) – all the dots finally connected enough for me to wrap my brain around it.

That initial blood draw, and then the wave of awfulness that followed (more blood draws, an IV, surgery, an MRI, x-rays, platelet infusion, cancer diagnosis – all within the span of 4 days), was the catalyst for this ‘needle phobia.’

Knowing all I know about mental health and having lived with PTSD for decades myself, it still took me this long to wrap my head around what happened to get us to a point where Jack can NOT STAND a blood draw. Stopping to think about it makes it clear to me – OF COURSE he is terrified of blood draws. Every time he sits down and holds his arm out to a white-coated person, he is transported back to that time 3 years ago. The emotions and blurred memories of a terrified 5 year old rush back to him and suddenly he is reliving the collection of medical traumas he’s endured since he first got sick.

Even though he’s 8 now, he is still not much more equipped to handle all of that now than he was then. To him, a needle is not just a needle – it is so much more terrifying that a sharp piece of metal. To Jack, a needle represents a 3-year battle for his life. And that battle has ended, but the winner is still unclear. The cancer is gone, but we don’t know for sure that’s it gone for good and that uncertainty leads to anxiety.

With cancer out of the way, the emotions that were pushed to the background over the last few years have resurfaced and they’re kind of taking over. Jack’s had two night terrors in the last week. His anxiety is at a high again and he has a weird, nervous energy about him that he seems unable to control. He has complained several times of “feeling like he’s going under anesthesia,” which I’ve gleaned is likely some sort of dissociation, and it comes upon him at random times.

Jack brain is reconstructing the past whether he wants it to or not. And my job as his parent is to help him get the tools to understand and resolve it.

To therapy we go.

The Rest of His Life

We had our post-treatment conference with Jack’s oncology team last week. Each family unit was given an Off-Treatment binder.

binder

Right inside the binder is an Old Irish blessing:

May the road rise to meet you
May the wind always be at your back
May the sun shine warm upon your face,
The rains fall soft upon your fields.

We were given information on long-term follow-up guidelines, which includes the following:

  • Introduction to Long-term Follow-up
  • Emotional Issues after Childhood Cancer
  • Health Promotion through Diet and Physical Activity
  • Education Issues after Childhood Cancer
  • Male Health Issues After Childhood Cancer
  • Dental Health
  • Kidney/Bladder Health
  • Liver Health
  • Bone Health
  • Avascular Necrosis
  • Skin Health
  • Heart Problems Following Treatment for Childhood Cancer
  • Cataracts/Eye Problems after Childhood Cancer
  • Peripheral Neuropathy
  • Raynaud’s Phenomenon
  • Reducing the Risk of Second Cancers

Jack will continue with post-treatment check-ups for the rest of his life – he’ll be seen every month for the first year, then every 2 months for the second year, every 3 months for the third year, every 6 months for the fourth year, and then yearly after that. He will get blood tests run at every visit. Every 5 years he’ll also get an echocardiogram to monitor his heart for abnormalities that may show up.

Due to both the cancer itself and the treatment for it, Jack is at greater risk for developing all kinds of things, and the oncology team reinforced the fact that any time Jack goes to see a new doctor, that physician needs to be informed about exactly what type of treatment Jack received and how much. We were told that MOST physicians will need to be educated by us or Jack because most will not have ever treated a childhood cancer survivor.

In September (six months post-treatment), Jack will start the process of being re-vaccinated for everything he already received pre-diagnosis.

Kaiser sent a referral for a full neuropsychological evaluation with an outside psychologist. We’ve scheduled appointments for that after the school year ends since the testing takes 6-8 hours. It’s split into four sessions over about a month’s time, and the results will hopefully give us some insight into how Jack’s brain has been affected by cancer treatment and guidance on how to help him in school and life.

Now that treatment is over, a lot of our focus is on dealing with the emotional impacts of the last three years. We have an immediate problem to address, which is to figure out how to get Jack’s lab draws done. We were unable to acquire a blood draw last week because of the extreme anxiety and panic Jack experienced when we went to the lab.

Now, let me be clear: this is beyond fear – it is Post-Traumatic Stress Disorder. Jack went into the lab armed with all kinds of tools to help deal with the pain of the needle (yes, we had the Buzzy!), but once he was in the lab chair and the tech started to prep him, something took over in his brain and he went rigid, started shaking and thrashing, and crying and screaming. He couldn’t hear anything we were trying to say to him, could not process our words, and could not be held still even with two of us trying. I put the Buzzy on his arm, and yet he kept screaming, “I need the Buzzy!” He just couldn’t even feel it – he was somewhere else entirely. The experience was a lot like his night terrors – we were powerless to help him and the lab techs ultimately decided it was not safe to try to stick a needle in his arm.

It’s heartbreaking to see Jack going through this. It’s also necessary to monitor his blood counts because if the cancer was going to come back, it’s prime time for it to do so now that the chemo is leaving his body. (According to the Dana-Farber Institute & Boston Children’s Hospital, between 15 and 20% of children who are treated for ALL and achieve an initial complete remission will have the disease return.) He still has complaints about feeling unwell from time to time and a CBC is the best way to see what is going on with him.

So we’re in search of a therapist who can help us. Unfortunately, this is not covered by our insurance. Kaiser has great mental health classes, but when it comes to long-term or intensive therapy programs, they are sorely lacking (they even have to refer patients outside of the system for the neuropsych eval, something that they do for every childhood cancer patient). Continuity of care only goes so far with them. It’s on us to figure out the best, most expedient way to get help without going broke. (And what if therapy doesn’t work? What then?)

Even aside from the immediate problem of getting Jack to be able to take blood draws, there are clearly emotional scars that need addressing. We’ve tried play therapy with an outside therapist and then short-term CBT within Kaiser and had limited success. Some healing simply takes time, but he will still need professional help to learn how to process his experiences and be less controlled by his anxieties.

So, treatment is over but life after cancer stretches before us. It’s a new journey – a better journey than the previous one, but not without its own challenges. Thankfully, Jack is a fierce and determined survivor.

TigerJack

“He’s watching us all with the eye of the tiger…”

End of Treatment!

Jack’s been off treatment for over a month! I’ve been terribly remiss in posting about it here. We took a few pictures, though. The first is his last day of chemotherapy in the clinic. The second marks the last day of oral chemotherapy altogether!

We’ve already seen a big difference in Jack. He is full of so much energy now! He has a huge (it seems to us, anyway) appetite! He’s waking up on his own a lot in the mornings rather than needing to be dragged out of bed. It’s AWESOME!

His Broviac catheter has been removed from his chest, as well. That is both good and bad. Good because we don’t have to go to the ER for a fever anymore and we don’t have to worry about dressing changes! Bad because it means now Jack needs to get blood draws with a needle from now on…

And he is deathly afraid of needles.

We tried to get labs drawn this week and it was a miserable failure. We are now looking at finding a therapist who specializes in EMDR (a therapy used for PTSD) in kids to deal with the trauma issues he has developed. We need to get this done soon and quickly! We can also try a finger prick approach, but I am not convinced that will work any better than a needle in the arm. Even if it does, he needs more therapy – his fears and nightmares (and NIGHT TERRORS) are still terrible.

So, that’s where we’re at with that. We are celebrating the end of treatment tomorrow by hosting a party in Tilden Park. Jack has come up with some cancer-themed games he wants to play and we’ll eat, drink, and toast to the fact that we survived the last 3+ years!!

Fuck cancer, y’all.

Yet Again, I’m Blogging About Mental Health

Today is Mental Health Month Blog Day. Mental health – and illness – is a topic of great importance to me and something I’ve written about before. It’s importance has only grown as I’ve gotten older. My experiences with mental illness have led me to get involved in helping others through sites like Band Back Together and I try to speak about my experiences openly and honestly whenever possible.

Did you know that a quarter of Americans experience a diagnosable mental health disorder every year? It’s highly likely that you or someone you know (or SEVERAL someones you know!) is dealing with mental illness. And yet, “research published in the Journal of Health and Social Behavior (Vol. 41, No. 2) finds that 68% of Americans do not want someone with a mental illness marrying into their family and 58% do not want people with mental illness in their workplaces.”

Whaaaat??

This is why it’s important to talk about mental health!

I'm Blogging for Mental Health.

I was diagnosed at age 15 with depression after I read an article in a magazine. Mental illness runs in my family – my dad, my mom, my brother, my grandmother, and cousins have been diagnosed with various problems – but I was one of the first to receive a diagnosis and treatment. Once I was diagnosed, a number of my family members realized they struggled with the same issues as I did and sought help. Our family life improved drastically after we got help.

Getting help was the best thing I ever did – for me and for my whole family.

I thought I knew everything I needed to know about depression by the time Jack was born, over 10 years after I was initially diagnosed, but then I experienced Postpartum Depression and PTSD reared its ugly head. I threw myself into therapy once again, this time taking a multi-pronged approach with group therapy, skills building classes, and individual therapy along with medication. I went through a variety of these intense therapies for about four years before I felt like I could take a break.

Treatment has been tremendously helpful. In many ways, I am a different person than I was before that very intense therapy. I grew up with so much trauma and while that is common, it’s not easy to cope with. I came up with some very creative ways of coping but the coping didn’t end when the traumas did. And because I was so busy coping, I wasn’t living.

But treatment alone would not have done it for me. I needed community. I needed friends and family. And as difficult as it was to reach out, I did. And my friends and family kept me going throughout my treatment.

Now my son struggles to cope with the challenges in his young life, partly due to genetics and partly due to his experiences with cancer. I am especially thankful these days that I took the time to help myself! I am strong enough now to help him. I can tell him that it’s okay to be sad and that he doesn’t have to just CHEER UP and GET OVER IT. I can help him grieve and move on so that his feelings won’t haunt him for years and years. And I can show him how to ask for help from family and the medical community.

He doesn’t have to be alone.

It is my hope that – eventually – no one will have to go through mental illness alone. Mental illness was something I struggled with by myself for a long time and it wasn’t until I got help from others that I truly started to find healing. It was 100% worth it.

I encourage you all to share your experiences and to reach out to others – whether you are the one struggling or you know someone else who is. Even if the results are small, they make a difference and can change a life.

Getting Lost With Ghosts

I wish I had better things to say. I wish I could say I’m doing a great job of handling everything that is going on right now. I do have good days and bad days – the bad days are taken over by anxiety attacks and depression, while my good days are still filled with weariness and worry. I’ve been burying myself in television and books to escape err, cope.

I haven’t been sleeping well. I look at the calendar several times each day to remind myself what day of the week it is. I forget to drink my coffee. Most nights I skip dinner. Last night I ate peanut butter cups.

My house is a disaster. And it smells. My cats ran out of food last night but I got home too late to get to the pet store for more. They are surely pissed off today. I need to fix the flat tire on my car, too. Oh, and go grocery shopping…

I took a day off last week sometime. I stayed in bed all day. I knew I had to move my car or risk getting a ticket. I went back to sleep instead. When I woke up, I peeked out the window and saw a ticket on my car, but I still couldn’t find it in myself to care. The idea of getting a second ticket didn’t even push me out the door…not until I realized David would be upset about it (we’d JUST talked about our expired parking permits a few days prior).

Things are a little better when Jack is with me. It gets me out of my head, I suppose. When he’s not here, I think about his treatment. It’s a few weeks until he starts the phase with eight different meds…it’s been a while since he’s spent time with kids his age…he needs to go to the dentist…we need to draw blood on XYZ days…I need to take a day off for his next treatment…when will he lose his hair…how will he handle it…is he doing too much activity…when will he end up back in the hospital…

It’s only been three months since his diagnosis – how long can I do this? I’ve been trying to think of ways to destress. Obviously this all has lit a fire under my PTSD. Usually when I’m stressed I take a trip, get away…but now I’m terrified to be away from Jack. Every time I try to make plans I just think about all the uncertainty ahead and how I’d rather just sit on the couch watching movies with him and snuggling under a blanket. I need to be here in case something happens.

I’m mad at myself for feeling this way. Jack’s been doing great. There have been no set-backs. Side-effects are few. In so many ways he is a normal kid. There will be an end to all of this. The end is three years away, though, and there will likely never be an end to my worry…

I need to keep going. There is so much that needs doing. I just need to stop getting lost in all of it and leave my ghosts behind.

Delayed Reactions

Jack’s out of the hospital. Thank goodness. Today he is at his first Cancer Clinic appointment getting an infusion of chemo. I’m looking forward to him coming home, and hope he isn’t too sick afterward.

I keep trying to tell myself the worst has past – that the prognosis is good, that so many cancer cells have already been zapped by the chemo, that the disease won’t progress. I know these things in my head. Still, my heart aches. I struggle to get out of bed in the morning, to eat, to do anything to take care of myself. When Jack isn’t here I don’t know what to do. What was life like before this diagnosis? What did I think about when cancer didn’t fill my every waking moment? What if Jack isn’t one of the 90% of kids cured?

I keep thinking about how all of this almost went undetected. I almost didn’t take Jack to the doctor. We almost didn’t opt for a blood test to “confirm” anemia. It would have been so easy to dismiss all of his symptoms as a combination of fighting off a cold and returning to school after a long break. It serves no purpose to think about these things but they are invading my mind nonetheless.

I am very much shell shocked. I got through the crisis period without completely freaking out, but I didn’t escape the freak-out – it’s just happening after the fact. My brain and body are not cooperating. I can’t think straight and I feel tired and/or sick to my stomach all the time. I started getting angry at the piles of boxes in our house – not that I don’t appreciate everyone’s thoughts and generosity but I just want to go BACK. I want to NOT need any of this stuff. I’d much rather have someone take this nightmare away. So when I look at the boxes and think about what they are for, I have this irrational anger…and then I get angry at myself. :P

I can keep myself busy some of the time. My friend Kurstan ventured out to Target with me this weekend and I bought storage for medical supplies and cleaning products. I came home and organized a bunch of the house, put away the laundry my friend Katie graciously washed while we were away, and started washing items we brought home from the hospital. I’m back to work this week, as well, but I’m having trouble focusing on the simplest of tasks. Maybe I need more coffee.

All of our friends and family (and even strangers!) are being so awesome and loving and kind to us. I really do appreciate it, despite this cloud over my head. I haven’t once felt alone since this all started – I feel a community of support behind our family. I just wish the occasion hadn’t arrived where we need this support…

I am blogging for mental health

May is Mental Health Month and today in particular is Mental Health Blogging Day.  I am a longtime sufferer of mentalMental Health Blog Party Badge illness and an advocate for awareness and support through the community support website Band Back Together.

I think days like this are important to let others know that they are not alone in their struggles with mental health issues.  Whether you are a sufferer, a friend, a family member, or an acquaintance of someone with a mental health issue, you can educate yourself and others and help make the world a more compassionate and supportive place.

My name is Crystal and I deal with mental illness on a regular basis.

Sometimes I don’t act like ME because I suffer from chronic Depression (diagnosed at age 14), Anxiety, and Post Traumatic Stress Disorder (DES-NOS, specifically).  I attend weekly therapy and take medication to help me manage these issues.  I have difficulties managing my response to stressful situations and memories due to the way that my brain processes information/stimuli – multiple traumas throughout my life have impacted the way I view and experience the world around me.

Despite dealing with these issues for so much of my life, I can still live a normal life – I am not ‘crazy.’  I have a wonderful relationship with my husband and son.  I have a great job at a place I’ve worked for the past 3.5 years.  I have friends and hobbies and many of the same worries that others out there have.

Most days I am a very high functioning individual.  Sometimes I need to step back from my responsibilities a little bit and focus on taking extra care of myself.  There are those days when I can’t get out of bed – on those days I need help from my support network of family and friends.  I have fantastic people in my life who have helped me even when they don’t know it.

*****

I have heard various awful things said about those who suffer from mental illness over the years, even from people I love.  The stigma of mental illness still leads people to state that they wouldn’t vote for a politician who was known to have a mental disorder, or that those with a mental illness should not have children.  It’s disheartening to hear these things and I’m hopeful that as we speak out, the stigma will lift more and more.

If you or someone you know suffers from a mental illness, please take the time to educate yourself about the symptoms and effects on their life.  If you would like to reach out to a community for support please visit Band Back Together.

Enhanced by Zemanta

Truthiness Day 26: Giving Up

Day 26 → Have you ever thought about giving up on life? If so, when and why?

Yes, I’ve thought about giving up on life a lot over the nearly 30 years I’ve been alive.  I doubt there is a month that goes by when it hasn’t crossed my mind.  I’ve called the mental health help line.  I’ve been taken to the emergency room.  I’ve taken too many sleeping pills after an argument.  I’ve asked people to keep an eye on me because I didn’t trust myself.

Why?  I have Major Depression and Post-Traumatic Stress Disorder.  I have been on and off meds since the age of 14 (I’ve been on for the past two and a half years now).  I’ve had many instances of my mental illness flaring up.  Sometimes there seems to be no reason at all.  Sometimes there is a reason – like a miscarriage or painful memories from childhood that feel too overwhelming.

So yeah, I think about it.  But I also think about my family when I think about giving up.  I appeal to the part of myself that can’t help but take care of others.  I remind myself that giving up would be the opposite of taking care of Jack or David.  Sometimes I can’t care about myself, but I can *always* care about others and the people I care about are my lifeline.

Enhanced by Zemanta

Mental Health Month

May is Mental Health Month.  I attended a WEGO webinar earlier this week to learn how to participate in spreading awareness, so you will likely be seeing some informational posts and/or tweets from me throughout the month.  I’d also like to let you all know that if you have any questions about mental health, particularly in relation to the things I am intimately familiar (Depression, Anxiety, Dissociative Disorder, Post-Traumatic Stress, Post-Partum Depression), please feel free to ask.  I have been dealing with these issues for over 15 years and have no problem sharing the wealth of information and resources I’ve collected in the mean time.  It’s important to continue talking about mental health issues to battle stigmas.  [Note: I do have a post written up about a lot of these issues but it is password protected for my family's sake.  If you would like the information to access it, please send me an email.]

While I plan to be involved in the activities to spread awareness throughout May, I am (appropriately?) enmeshed in a depressive episode and my posting may be sporatic.  Depression often creates some brutal writer’s block for me, which is…depressing.  :P   I’m trying to pull back from commitments where I can to focus on getting back on track mentally.  In the mean time, I appreciate your patience and hope that you continue to engage when I *am* around.

If you are looking for mental health resources, the National Institute of Mental Health and WEGO Health Mental Health Community are two great places to start.  In addition, a dear friend of mine Sarahndipitea is a community health educator with WEGO and also writes a weekly column on Savings.com called Balanced that focuses on simple and inexpensive ways to maintain your overall health.

Now, if you wouldn’t mind sharing – how have mental health issues touched your life?  What is your perspective on helping others who suffer from mental health disorders?