PTSD

So things are going well with Sammy.  His blood counts were good at our last visit, he is becoming more active and his old personality is emerging.  The latter can actually be a little challenging, as he was a feisty fellow with an iron will and the ability to argue like a professional lawyer.... but that also helped him get through his battle.

Jack is okay.  He has some anger issues that he talks openly about to me, and I feel he might need some counseling to resume in order for him to work through his issues.  'Treatment being over' doesn't mean the feelings go away.  In fact, whole new sets of troubles arise.

No one likes to admit to being weak and unable to handle situations.  That is not what I am doing with this post, in fact. However, something new is developing, or rather has been brewing over the last few months.  Basically, my own body has launched an all out attack on me.... it doesn't want to do anything anymore, and it keeps telling me to quit and go to sleep!

Surely now is the time for me to be getting all excited about the future ahead of us, the gratitude for our beautiful son being able to live his life, the thrill of less hospital visits, and the return to normalcy?  But it is not.  We hold our breath every time Sam is tired, gets a pain, or falls badly.... not actually as much as I thought I would, but it is still there.  Yet, now the worst is over, I am sick...sick and tired...ALL the time!

I have gone through many tests.  My body is strong enough to run a marathon!  I am fine!  I am healthy! I am loosing my mind!!!!!   Yep!  I am actually diagnosed with Post Traumatic Stress Disorder...what kind of a frickin' wimp am I??????   There are parents who have been through all of this and lost their children...seven every day to be precise!  45 parents are given the news their child has cancer every day, you don't hear of all of them cracking up and needing to sleep all day once the worst is done!

But that is why I'm telling you about it.  It is not something that is talked about.  And seeing how this blog has basically been a bare my soul, warts and all kind of experience, why stop once treatment is over?

I literally cannot get through a day at work and then function at home.  I am on meds to help and I am actually calm and don't get angry, panicky or 'stressed'.  But, and this is the big but.... I am exhausted to the point of not being able to do anything almost all of the time.  I push and get through what I have to and then, sometimes, collapse in a heap on the couch and ignore the kids and leave my lovely Brian to do it all.  I have no choice.

Going out to enjoy myself has also become a chore.... I have made so many apologies lately for missing functions...because I literally slept through them...I have lost count!  A good friend had a 'talk' with me yesterday and dragged my butt out to a party.  She saw me today and commented on how absolutely wrecked I looked...it took so much out of me.  I did enjoy being out, but payback is a bitch and I didn't even drink too much!!!

So what now?  Therapy again...this time for a more extended period, done properly!  I know I have hit bottom, as I have had to keep my chin up, work with children who deserve nothing less than 100%, look after a sick kid, keep my other son sane, and juggle daily life too!  I managed for two years, it is time I let my body rest.  Impossible...all the above still apply to varying degrees.  But anyone who thinks parents of kids with cancer are okay once treatment is over and their child is on the road to a normal life could not be further from the truth.  Now is the time the parents are collapsing and clinging on for dear life!

I will be fine.... other parents will be fine.... but I am sharing a reality that is such a big elephant in the room.  Life AFTER cancer sucks too!

Electromyography (EMG)

The results from the MRI were good.  No visible damage to the spine - phew!

The next test for Sammy was the EMG (Electromyography, or EMG, involves testing the electrical activity of muscles. Often, EMG testing is performed with another test that measures the conducting function of nerves. This is called a nerve conduction study.)

Sammy was amazing as ever.  The doctor was very gentle with him and proceeded to look at muscle strength and his ability to walk, grip etc.  The "claw" of his fingers was noted (Sam cannot straighten his fingers and they are permanently set in a claw-like shape), and his strange gait was noted. Then it came time for the electric shocks. 

Sam became very angry that the doctor did not wait for him to ask the questions he had about the test.  He was experiencing pain from the shocks, but his gripe was more that fact he had not been allowed to talk about what was going on.  He kept asking, "Why don't doctors ever let me ask them about things, I need to speak before you do this..."  Mummy instinct told me he was right, but at the same time, the test was almost over and I didn't want the pain prolonged.  I tried to explain this to my very determined and angry young man, but he was too upset about being ignored himself.  Once the test was over, Sam sat in my arms, disgruntled, but willing to forgive.  

Unfortunately the news wasn't as good as I had hoped.  The chemo has caused muscle and nerve damage which will be a long-term issue for Sammy.  He may return to his former self, but it will probably  take years.  He will need therapy for a long time and then his walk and grip may not return to normal.  

Sammy's wish is to be able to run with his friends in the playground.  I now have a new mission...to help grant that wish for him! 

On Again, Off Again!

The week has gone by at a snail's pace.  Tensions are high as we are all suffering a basic case of 'sick of it" in this house.  Sammy cried his eyes out when the doctor told him he had to keep his cast on for another three weeks.  You could almost see the band of angst surrounding us all...manifesting in each family member in its own way.

Breaking the taboo of being a nut job, I admit to my first real anxiety attack.  Not pleasant, and a big wake-up call to how this whole thing is getting me down now.  Hopefully, having been to my internist to explain that my coping skills have got up and went, and are now becoming physical issues such as fevers, headaches, the feeling of shaking inside my body, and the never-ending exhaustion, I will find someone who can help me more.  Yes, I have been to a therapist, but I think I need to try someone else.

Sammy had his Day One of the cycle on Thursday, meaning steroids and heavy chemo.  We brace ourselves for the onslaught to come!  On a happier note, the doc at Montefiore took his cast off....yippee!  Long story about all of that, but this doctor actually x-rayed Sam and checked his foot without the cast before declaring him fine to hobble along without it.  Pool, here we come....after the baseball is over!

Jack has had baseball, either a game or a practice, almost every night for the last two weeks...talk about taking it seriously!  We have somehow managed to get him to each one and even watched every game.  Jack is in his element, he needs this, and we are determined to give it to him.  We even had him blow off homework one day...great teachers we are!

This weekend is steroids, baseball, and the theatre.  Jack has early morning baseball.  We are going to see the middle school production of Alice in Wonderland...they are donating a percentage of each ticket to Sammy's LLS fundraiser.  I am actually 'performing' on Sunday so I have the dress rehearsal on Saturday, performance Sunday....hide in embarrassment and shame the rest of the week!  We are hoping Sammy's steroids don't throw a spanner in the works...gulp!  The good thing about this crazy weekend is that I will be too busy to have another panic attack..I hope!

Cancer moms/dads, here me now....I am at the 'easiest' stage in Sammy's treatment....it is the hardest stage for me.  I know everyone is different, but I know of other cancer moms/dads who have had this experience.  I am not conquering my anxiety yet, but I do know I can't try to do it alone.  I urge anyone who is feeling this way, no matter where your child is in treatment, to seek help, do things for yourself, make YOU better so you can help your family.  I will journal my personal hell to help others see they are not alone.  I am not looking for pity...it will pass!

Un-cancer moms/dads, know that when you ask a parent who is years into treatment of their child's cancer how things are, you will not get an honest reply.  We say, "Going well," or "Everything is as planned"...what we mean is "Help me I am drowning in this, and I don't know what to do to get myself out!"

Have a safe and happy weekend....I will be dancing my little heart out...great therapy :)

Therapy

So many have been asking why I haven't been posting.  I am not really sure why, except that I have been having what I am calling 'delayed anxiety' over all that has happened over the past year and a half.  Basically, anxiety about our situation has set in and I finally dragged my butt to see someone to help me cope.

Sammy has been doing very well, steroid pulses aside, and has not been neutropenic or hospitalized for a long time, (watch me jinx it now)!  Yet I have been panicking, often in the middle of regular activities, about Sam, Jack, the house, school, putting on weight, which direction to turn in my life, and of course, the big one...relapse.

Finding myself unwilling, almost unable to make it through the day, to get off the couch or become motivated and excited at work, wishing night would come so the kids would be in bed and I could just be alone in my own thoughts...not healthy!!!!

"Well, you have been through so much, I'm not surprised you are feeling it!" so many have said.  But that is not good enough for me....I can cope with anything....I know I can.  The reason I know this is because I am willing to seek help, find support, get my butt into gear again and start living life.

So help is what I sought, and it was amazing to spill out all my angst at a total stranger....REALLY.  I had never been to any form of counseling before, I didn't ever think I would.  However, I strongly recommend it to anyone dealing with a child with a serious illness.

Strangely, the first session was okay and I left feeling like I was on to  something....then spent an hour parked at Binny Park, crying bawling by eyes out.   I was miserable for the whole week, almost debilitated with the feeling of absolute failure and depression.  I did not move, I did not speak, I just went to work, did my thing, came home and crumbled.  Brian was unbelievable in helping me through this stage by just doing everything!  The next session was a little easier, I was sad for a couple of days, not the whole week.

Now I am feeling a release from so much anger and panic.  Well, actually that is not quite true...the anger and panic is till there, but I can push it out again and cope...most of the time.

Today the sunshine was a happy thing...I played outside with the boys for hours.  We sang to Alice in Chains, The Ramones, and the Black Eyed Peas as we made lunch together, and I enjoyed being with my boys again.

Sam still battles cancer, Jack is about to get therapy to help him with his situation, Brian has a broken toe...but I am able to cope with it all again.  We all need help at times, my time is now...just as life was becoming more normal.  Perhaps that is why I began to crumble, I am not in the 'shocked to my bones' stage anymore.

Why am I sharing all of this?  Because I'm acutely aware of the audience this blog has attracted....many people view the posts from sites such as www.cancerkids.org and I know how hard this whole experience can be.  Seeking help is part of the journey...I realize that now.  Sometimes a total stranger is the person who can make you feel better because they are totally detached from your situation.  They are paid to listen, there is no need to sugar coat or be guarded so you don't overburden wonderful friends.

Today is a good wonderful day!