Posted by Steph in
3 Years Post-Treatment, Feelings, on Monday, May 31. 2010 at
This month has been especially hard for me. It might be because I made that video....looking at photos of Asher pre-diagnosis made me relive it all over again and I'm not sure that was the healthiest thing for me to do. Sometimes I think I need to do these things, because it will help heal me, but it makes me feel horrible and so much worse.
I find that, four years after diagnosis, not many people think about Asher or his cancer or his treatment, and no one asks about it anymore. But, I find I need to talk about it, a lot lately, all the time, it is like a daily book that I need to open. It is very painful. I'm in a very tough spot right now in my life and I'm saying it, I'm letting you all know. It sucks. It really really sucks.
I went to my first therapy session last week, on the 4th anniversary of Asher's diagnosis. It was only 40 minutes, and the therapist concluded my marriage was the source of all my problems, and as I was pushed out the door, I felt horrible. I could barely function the day after.
Yes, my marriage isn't strong right now, but it isn't the "source" of this stuff I feel. With a large yard and house and four children to take care of, I feel like I don't have enough time to process when I need to process. I find myself talking (or trying to talk) about the same stuff over and over to my husband, who, from what it feels like, doesn't want to listen to me. This weekend I was even asked by my mother-in-law if I talk with Scott about anything fun. Am I really that depressing of a person? It is especially hard for me, because I would rather talk to someone who has an emotional interest in me, someone who might even love me. Lately I feel like there are very few people that even love me. As well, I feel like really talking about this stuff alienates my relationships. That is why I finally decided to call a therapist. What made me pick up the phone....being alone at home, husband out of town, and crying that I had trouble stopping.
I feel like I need to go away for a week or two and just process and cry.... I refuse to cover this up with Zoloft or any other drug. I am convinced, a therapist can help me. The right therapist.
I'm not going to go back to this first therapist. I found one much closer to my house, and am hoping I can get in to see her early a.m. or in the evenings when Scott can be home, or during the day when my mom can watch my 4 kids. She is even trained on EMDR Therapy, and maybe that, and a little of Cognitive-behavioral therapy, I can be helped, without medication.
Here are some things I feel, at random times:
Re-experiencing the traumatic event
Intrusive, upsetting memories of the event
Flashbacks (acting or feeling like the event is happening again)
Feelings of intense distress when reminded of the trauma
PTSD symptoms of avoidance and emotional numbing
Loss of interest in activities and life in general
Feeling detached from others and emotionally numb
PTSD symptoms of increased arousal
Difficulty falling or staying asleep
Irritability or outbursts of anger
Other common symptoms of post-traumatic stress disorder
Anger and irritability
Guilt, shame, or self-blame
Depression and hopelessness
Suicidal thoughts and feelings
Feeling alienated and alone
Feelings of mistrust and betrayal
Sometimes my anger is very focused, like if I see the words "Praise God," or "everything happens for a reason," I feel like I'm going to explode. I've been waking up at 3am every night this month. This is new. I keep thinking I'm just hot; been pretty warm. But, it is the depression....
I need help.
Posted by Steph in
Childhood Cancer Awareness, on Wednesday, May 26. 2010 at
Collins' law. Prediction of recurrence or cure in childhood medulloblastoma?
Posted by Steph in
3 Years Post-Treatment, Feelings, on Friday, April 23. 2010 at
Yesterday, I had one of my mini-meltdowns. After a few different "medical" things ("symptoms") were showing up with Asher, I just lost it and cried and cried and cried some more. Because, sometimes it is just too much for me to take.
You might think after four years of living with the knowledge that my son had brain cancer, and three years of not having to live with it (meaning not being in treatment), that this would all just be a nightmare from my past. A big bad dream. A traumatic event that I am just supposed to let go of, kind of like crossing the monkey bars, because it is in the past. You might think I could stop thinking about
WHY DID MY SON GET CANCER?
WHEN DID IT START TO GROW?
DID HIS TIGHTLY WRAPPED UMBILICAL CORD CAUSE HIS EYE DAMAGE AND MAKE THE TUMOR GROW?
DOES HE HAVE A SPECIAL GENE THAT MADE HIM GET THIS?
WILL MY OTHER SON GET CANCER?
WHEN IS IT GOING TO COME BACK?
WHEN IS IT MY TURN TO WATCH MY CHILD HAVE A RECURRENCE?
You might think it, and I might think it.
But, just like the many other things that float around in my brain at any given moment, those questions hover in there and all it takes is hearing, "I have a headache," to bring them right up front. When they are in front of my mind, Asher's cancer might as well be back, because I throw myself into a research mode. I can't stop. I Google, looking for answers. I want answers. I NEED ANSWERS. I look for answers to things I don't really need answers for, at this time. I talk myself into 'these symptoms mean his cancer is back' and then I go looking for proof, or lack of proof. Then the heart (the part heavy in faith) comes in and tells the mind, stop it, his cancer isn't back, he has a cold, get over yourself, pick yourself up, get off the computer, he's cured....but I remain very fragile for hours and even days after....
It is sometimes a battle between science and faith in my own mind. I'm still convinced it is okay to be an engineer and believe in spirits.
So last week with the hand tremor, this week with the headaches, tummy aches, and eye flutters....yeah, I have been stunned and numb and very emotional the last two days. And, I tell myself, it is all for nothing. There is no reason to be panicking, or crying, or thinking what-if, or believing in anything past today, really.
Yet, I want answers. And I often think about gathering all the cases of childhood brain tumors and looking at the data so I can find the cause for my son's cancer.
But, I'm not going to get answers. And, I am trying to learn to not need them.
If Asher didn't get a fever last night, I could get an MRI, and a clear scan could bring me back down. Back down to some normalcy. I'd be back to functioning, but....BUT THOSE QUESTIONS HAVEN'T BEEN ANSWERED.
I am an engineer. I problem solve. I think ahead. I think about what-ifs. I believe in the right and wrong answers. I believe there is a solution to avoid buckling and failure. I believe there ARE answers.
I believe in God. I believe in spiritual connections. I believe in "the other side" (Heaven to some of you). However, I am not religious.
I do believe in medicine. I do believe in clinical trials, chemotherapy, surgery, doctors, nurses, antibiotics (oh do I believe in antibiotics!!)....
I do believe God works through people.
I do not believe death is a bad thing. (That's a tough one to leave as one sentence, without further explaining, but I am going to leave it.)
I do believe in angels and spirits. I do believe my maternal grandmother has sent me messages in my dreams. I do believe my father has visited me at night to comfort me.
I do not believe everything happens for a reason. I do not believe my son got cancer for a reason.
I do not believe in praising God when my son gets a clear MRI; I don't believe God or Jesus had anything to do with it.
I do not believe if I pray for something I will receive that something.
I believe prayers don't have to be spoken.
I believe if I am angry with God, and ignore Him today, He will forgive me when I come back to Him tomorrow.
I believe everyone is allowed their own beliefs.
I do not know what I believe, or what there is to believe in or about, 100% of the time. I know tomorrow I could change my mind. And, I know, sometimes there are no words to express what I believe.
But....tonight I will say this:
As awesome as I think God is, I think people deserve way more praise and credit for what they do, who they are, and what they plan for tomorrow. People matter. People need comfort. People need encouragement, understanding, and hope. People need recognition and appreciation and respect. People deserve the truth; people can handle the truth. People are always growing. People need other people. People should be trusted. People should work together to build something better.
And that is love.
People should love each other before they die....
Posted by Steph in
1 First Grade, 3 Years Post-Treatment, Eyes, on Wednesday, April 21. 2010 at
Asher's first grade teacher called me at 11am, the kids' lunchtime. She said she noticed Asher's eyes fluttering today.... Once I get a hold of my emotions, I will talk to her more about it, probably after school.
Just doing some reading, after my first reaction being - the fluttering is due to his scarred retinas - however I don't know everything and didn't see it happen. Read this on a website: If when he has the eye fluttering he stops his activities and stares, it could represent a seizure. Which is what I mentioned to Annie today when I called her about these things, and of course what put my emotions in instant panic when the teacher called. But, maybe it could just this bad eyesight, especially if he had just come out of the sun and into the classroom (although it a very cool, cloudy day for us today).
I talked with Asher's teacher after school and she said Asher was reading in front of his class. It was his day to share his journal. He was standing in front of the class reading, looking down at his paper and then back up at the class, and then back down at his paper. She said all of a sudden he put one hand to the side of his temple, near his eyes, and then both of his eyes fluttered. She said both her and her student teacher noticed it. The teacher said, "Asher, are you okay?" and then he said, "Yes!" He responded immediately and it doesn't seem like a seizure to me. Sounds like a focusing problem....poor eyes.
Anyway....when we were home an hour or so he said, "Br, I'm cold," and sure enough, he had a 101 fever....so I am sure all this crap is just because he's sick!! What a relief!!!
Posted by Steph in
1 First Grade, 3 Years Post-Treatment, on Thursday, April 15. 2010 at
4/20 - talked to Asher's teacher tonight - she said she hasn't seen anymore tremors - she did tell me it was in one hand, she thinks, as he was holding a book with one hand and pointing to a word with his other hand and the whole book was shaking - I'm thinking I don't need to worry unless I see it happen again....
Posted by Steph in
3 Years Post-Treatment, Feet, on Saturday, April 3. 2010 at
He had also fallen twice, two days in a row, at school during recess, and scuffed his knees and elbows to bleeding, both days. One day he had jeans on, and still bled through, the next day shorts. When he got home, the first day, he said to me, "But I didn't fall on my face!" Yes! This must be a very good sign....that he can catch himself now on a fall....he has ALWAYS landed on his face/head during his falls (following treatment).
He has continued to walk on his tip toes A LOT, even while wearing shoes, not just bare foot. It used to be that I really only noticed after he was tired, after a full day of school or something, but I seem to notice it whenever now....going to try to keep a better record of it....
Oncology and PT has never addressed this, no matter how many times I have told them or asked about it.
Now I am wonder if he has Neuropathy....
Just started reading about it....esp. this link:
I may take him to a foot doctor I went to for my flat feet / pain....
4/15 - first thing in the morning, sitting at the kitchen table, Asher says, "My ankle hurts."
4/17 - doing some reading on the toe walking....have I not looked this up on the internet before? Wow there is a load of info, most of which is not very promising, in that the toe walking may be permanent....torticollis....cerebral palsy....Sensory Integration Disorder....idiopathic toe walking....
Interesting though, in my reading, from a toe walker herself, regarding her ankles, "My parents tell me that I've been walking on my toes since I was a baby, way back when I used a walker. I am now fifteen....I sometimes experience sore ankles, but those can be relieved with ankle tensor bandages. I did experience a "clicking" in my ankles when I was eleven, but the doctor said that it was just a tendon clicking against a bone. I am actually faster when I am walking on my toes, and I feel this is my natural way of walking."
In all my reading, I did not find anyone's child with a past brain tumor, chemotherapy, and toe walking....
In my opinion, and I'm not sure I'm allowed an opinion since I'm not a doctor, but I'm still thinking his toe walking is related to his control of his balance. He wore those foot braces back when he was in the hospital and not walking much, and since I wasn't there when he got them (Scott was) I really have no idea WHY he got them, or if they knew he had a tendon problem or what.... Anyway....it reminds me of playing basketball....bend my knees, stick my butt out, stand on the balls of my feet, shoulders wide, elbows out, fingers spread apart some, hands facing inward....defensive stance....balance....
Anyway, sounds like I could take him to a pediatric orthopedist....where they could diagnose him....and then most likely discuss braces, exercises, casts, surgery, or outgrow on his own....
Or I could take him to PT....
I think I'll see what his pediatrician thinks and go from there.
Posted by Steph in
3 Years Post-Treatment, Teeth, on Thursday, April 1. 2010 at
Back in January, radiology at PCH said it was no big deal....they have kids with dental appliances all the time....
But, a friend told me this:
"Most of these appliances have at least some stainless steel in them, and although they don't pose a problem in terms of being magnetic, there are still 2 issues: (1) some hospitals won't tolerate any stainless steel to go into the MRI at all, if they make you pass through a metal detector stainless steel will be detected, and (2) stainless steel causes artifacts that will obscure certain areas of the brain."
Now to figure out if I have to have the space maintainer taken off and put back on for each MRI....not sure what that will cost us, but at least we are on 6 month MRIs now. And, apparently the hospital radiology team has a website that has all sorts of appliances listed and how they affect the MRIs....so getting brand and other info to them next week....
Talked to the dentist and the lab team today. This is called a Nance Holding Arch Appliance (NHAA). It is made out of stainless steel and nickel and acrylic. Even if we had another appliance made, they can not make the bands out of titanium, only the wire. I've sent this information to radiology/oncology. The dentist will remove the appliance before the MRI (like a day or two) and then put it back on after the MRI (Monday in case of a Friday MRI) for no charge, if that is what we decide to do.
Posted by Steph in
1 First Grade, 3 Years Post-Treatment, Fine Motor Skills, on Friday, March 12. 2010 at
Posted by Steph in
3 Years Post-Treatment, Clinic Visits, Scans, Tests, on Thursday, February 25. 2010 at
Posted by Steph in
3 Years Post-Treatment, Clinic Visits, Counts, on Saturday, February 13. 2010 at
RBC=4.45 (norm 4.3-6)
Segmented neutrophils=34 (40-85)
Protein, total=7.1 (6-8)
Bilirubin, total=0.3 (0.2-1.3)
BUN/CREAT ratio=25.9 (10-28)
Posted by Steph in
2 Years Post-Treatment, Letters to Asher, on Sunday, January 17. 2010 at
Took some pictures real quick before he headed to the arcade with his dad....couldn't go as a family because the little ones are too sick....so I'm a bit sad, as I had planned to take him to Disneyland....oh well....this will do....I know he's going to have fun with his dad today.
To my beautiful boy, happy birthday!
Posted by Steph in
2 Years Post-Treatment, Clinic Visits, Feelings, on Thursday, October 29. 2009 at
But, when I look back, as we are now just past Asher doubling the age he was when he was diagnosed with cancer, I question how everything happened in front of me. Around me. As if I was just a bystander. When I think back now, it is as if I am watching a movie of myself, .... and I judge myself, now.
Why is that mom just sitting there, not talking, numb, not having an opinion, not fighting, not asking questions, not doing research, not trying to understand technical terms? Why is that mom crying? Why isn't that mom crying? Why is she crying, ALL THE TIME? Why is she angry, losing patience, and not down on her knees praying? Why did it take almost five months for that mom to stand up, learn some medical terms, learn some medical procedures, and fight for her son's healing?
Why, now, do I start to lose my breath at just a second of a memory of that time? Why do my eyes swell up with tears, as I gasp for breath, and hold my breath, and then tell myself to let my breath out s-l-o-w-l-y, as the tears slowly drop off my cheeks?
I'm still struggling, with the thoughts and feelings....mostly quietly, alone, and not sure where to go with all that I feel....
To be honest, I don't write much here anymore, because I feel so damn bad. So many kids have died. NOTHING I feel matters, because Regina died, Charlie died, Alexa died, Henry died, Michael died, Jace, Stash, Coleman, .....
So, I carry on.
I nod my head, just ever so slightly when the doctors look at me and say, "He looks sooooo good."
I remember when he looked so good, when he was 1, and 2, and then three, and then, I guess he wasn't. BUT WHEN WAS THAT? When did he start to not look so good? When did this cancer start growing?
That is weird that I wonder this? But I do. I don't want to get too comfortable . I want to be the FIRST to SEE the monster IF it comes back.... But last April and May his left eye turned inwards and I wasn't the first to acknowledge it. So, either I won't be the first because I see him every day and won't see the obvious, or IT will be too small to see an effect, so the MRI will be the first to see it....
That's why we go, to the MRI as often as we do. They (the doctors?) figure if IT comes back, we need to catch is early, because recurrence is often deadly, deadlier than initial diagnosis....
I wasn't reminded of these facts today, at clinic. Dr. Etzl wasn't there. It was a group of all women, today. Asher was looking forward to seeing Dr. Etzl, though, and I saw the disappointment, in his face, that he wasn't there today. But, he participated pretty well, and was proud to show off his balance and strength. It was also the first time he had his glasses, at clinic. Apparently, the full report of his damaged retinas hadn't made it to the whole team before today.
So, I guess I wasn't reminded, verbally, today, that cancer can remain invisible and cancer can do what IT wants WHEN it wants to, but I know it, in my heart, and in my mind. And, that is what is hard about going to clinic. Because I have to hold my breath, and try not to remember, to keep the tears from falling, because, it doesn't matter. IT is the past, and IT isn't coming back, and I can give myself a break, because I did the best I could, back then. No one is going to write a movie about me, and I won't have to watch it any time soon, so I need to turn my mind off and go to bed and pretend it didn't happen so I can FEEL happier tomorrow....
Asher-B was born 1/03
Asher-B was diagnosed with cancer on 5/06, at 3 1/4 years old
Asher-B is the strongest he has ever been on 10/09, at 6 1/2 years old
And, today, I still struggle to say, "THANK YOU GOD," because of something in me, about that, and my faith, makes it weird. Thinking about it though, I do whisper it, "Thank you...."
Someone asked me, in a private guestbook entry to this blog, about my faith, and how my beliefs got me through.... Have you ever tried to WRITE what you believe? Share your faith? I'm working on it, and maybe I can share, some day....
Asher does look remarkably well. I was told today, by the neurosurgeon's assistant (OK, I really need to know what to call her....I'll just call her Katie), that THIS is the best she has ever seen Asher. She also said, "It is almost like you can't tell we were even in there," while looking at the brain MRI. Apparently the brain is healing itself, well, ....?
Oh, and one last thing, they highly recommend the H1N1 vaccination, for Asher, for our whole family....
So, that's it, until four months from now....we carry on....we try to find REAL MEANING in life as we carry on....it can't really be as simple as simple is, can it?