Posted by Steph in
Blog, on Saturday, July 30. 2011 at
I've done my best, this morning, to remove 99% of the photos on this blog. I will not assist anyone in their attempt to defraud people by sharing photos from when Asher had cancer. I may bring the photos back at a later time, if I have time to "watermark" all of them, but as you can imagine, that would take a lot of time. At this point, I don't think the photos are necessary to still share Asher's story and help give hope to other families going through this heartbreaking journey called childhood cancer, although, I do think they helped. Helped to show everyone that children (and families) are tough and still have joy during their battle with cancer!
For those that are giving souls, take a step back, slow down, before you give.
I hold all those who gave us gifts, gift cards, phone calls, money, .. in my heart forever!
Posted by Steph in
Feelings, Four Years Post-Treatment, on Thursday, May 26. 2011 at
Not only is today the 5 year anniversary of finding Asher-B's brain tumor, but today is the one-year anniversary of me seeing a therapist. It was something I finally had to do, and sure wish I had done 5 years ago, instead of only 1 year ago. I saw one on 5/26, but she was kind of far from my house, and then I got approved as a new patient to one closer to my house and started seeing her a month later. To think, my therapist was 15 minutes down the road from me all this time and I didn't know it. I'm still battling depression; my doctors tell me it is because my "chemicals are messed up." I'm still trying different meds. Some days I feel like giving up on the meds because I just don't feel different, and sometimes think I am way worse!! With the support of my therapist, I find it easier to live with less emotion. This is a good thing, for me. The anger is less (actually almost gone entirely). I do still have some irritability (that's the depression). I'm able to love easier, hug more, and take on more tasks. I'm still not finding enjoyment, though, and that's the depression. I had made many of my "feelings" posts private last year when I started therapy, but I have decided it is time to bring some of them back to the public. I have no shame in my emotional journey, and I share it with you. It is also time I take a look back over this past year to see how I have grown.
And, to the doctors, surgeons, and nurses, that saved my Asher-B's life, and gave me these five extra years, thank you! I wish I could thank each and every one of you personally!
Posted by Steph in
Four Years Post-Treatment, Scans, on Thursday, March 17. 2011 at
Posted by Steph in
Feelings, Letters to Asher, Scans, Three Years Post-Treatment, on Thursday, February 10. 2011 at
me: "Your MRI is in two weeks. On a Monday when you don't have school. Its a holiday. Daddy doesn't have to go to work either. Do you know why we do the MRI?"
Asher: While wiggling his fingers by his left temple, "To make sure there are no balls in my head."
me: "Yes, tumors. We are making sure no tumors are growing, in your brain, and your spine. They will scan your spine too," I said while rubbing a few fingers along his spine.
me: "Because the fluid in your brain travels down to your spine, and we need to make sure there aren't any tumors there, too. If your back ever hurts, you need to tell me."
Asher: "My back hurts."
me: "Like hurts and never goes away, or hurts and gets worse each day."
Asher: "Oh." (long pause) While touching the back of his head, at his scar, "Why did they cut back here, cut my head, when I was awake?"
me: "They never cut your head while you were awake."
Asher: "Yes they did."
me: "No, they put you to sleep just like you go to sleep for your MRIs."
Asher: "Yes they did. It really hurt."
me: "I wonder if you are remembering when you had the open wound and they were changing the dressing back there."
Asher: "They did cut back there while I was awake; I was holding a toy and looking this way and it hurt."
me: "That was when a child life person came in and gave you a toy to try to distract you. I wonder if you are remembering when they took the tape off your head. The very first time they did it, you were awake, but sedated with medicine, which didn't work very well. You were crying and holding my hands. I was there with you to make sure you were okay."
Asher: "They did cut my head when I was awake. Were you there to see it?"
me: "No, I couldn't go in with you for surgeries."
Asher: "Why not?"
me: "Because I am not a doctor or a nurse?"
Asher: "Why couldn't you go in and see the surgery."
me: "Like I said, because I am not a doctor or nurse."
Asher: "Well, they hurt my arm, right here," he said while pointing to his arm near his elbow. "And it was all bloody and it really hurt."
me: "Wow. (pause) Sounds like you remember having your Picc Line in your arm. You got an infection in the central line that was in your chest," I said as I touched him over his heart. "And you had to have a new one put in, in your arm. Before you started the last three months of chemo, they took the one in your arm out and put one in your chest," I said as I touched over his sternum. (bit of a pause) "OK, it is time to go to sleep now. Say your prayers. I love you. See you in the morning," I said as I kissed his forehead. I left him, in his dad's bed. (He still sleeps with his dad. When he started 2nd grade in August, I had him sleeping in his own bed. But, it didn't last but a few weeks.)
Asher: "Good night mom," he yelled to me after I was already downstairs.
me: Yelling loudly, "Good night Asher."
Downstairs I was in a bit of shock over his memories. He even seemed a bit upset while talking, as if he really remembers the pain. Wednesday afternoon I talked to my psychologist about Asher's and my conversation. I told her I hadn't looked at pictures in a very long time and I don't think Asher has seen any. His memories seemed real. Can he really remember? She asked me how old he was then. She said it is possible, that he remembers. Then I had a sudden thought. I wondered if that is why Asher wants the IV in his foot for MRIs instead of in his arm.
Posted by Steph in
Feelings, Letters to Asher, Three Years Post-Treatment, on Monday, January 17. 2011 at
We have been blessed with another year with Asher. He's grown physically, normally. He has remained healthy and not needed any antibiotics or doctor visits for illness. He can coast on a scooter and keep his balance. He is still trying to learn how to ride a bike without training wheels. He is reading better (but has trouble with story re-telling). He's good at math. He continues to be good at video games. He has friends. He is still shy. He tells me, his mama, that he loves me, and hugs me. He tests me, whining like a toddler, to get his way, but does not win. He's a normal kid, with a not-so-normal past.
Sometimes you hear, "Everything happens for a reason."
Sometimes you hear, "You will be happier if you are more grateful."
Sometimes you hear, "Don't fear or worry about things you can not control."
But, rarely do you hear the emotional truth, from a parent of a child who has/had cancer.
The emotional truth is that I am still searching for the reason, or trying to figure out how to live without one.
The emotional truth is that I thought I was plenty grateful. Somewhere, somehow the emotional trauma caught up with me, and no amount of thankfulness has repaired my pain.
The emotional truth is that I feel afraid and I worry.
A friend shared this blog article with me. My friend said, "It is written by an 'autism mom,' but I thought you could possibly relate." I read it and sobbed. Absolutely sobbed. There are no words that will express how I feel when I realize I am not alone.
When I last posted that I needed a break from this blog, I had started weekly therapy with a psychologist (July 1, 2010). By mid-August, after Asher's last MRI and clinic, I was much worse. She said I was in clinical depression and needed to seek help from a psychiatrist. So, I did, in early October. The med (Lexapro) the psychiatrist recommended, and prescribed, and I took, made me worse. By late November I chose to stop taking Lexapro (after my psychiatrist was unreachable (he went out of town for 6 weeks)). Under the advisement of my therapist, I voluntarily went into a mental health hospital in December to withdraw from Lexapro and get on new medications (Wellbutrin SR and Seroquel). I was there 12 days. Now I'm back to weekly therapy with my psychologist, and back to my psychiatrist bi-weekly. (Updated 3/3/11: Seroquel wasn't helping me and it was disturbing my sleep. My psychiatrist gave me Symbyax and instantly I noticed a change in my sleep and I even felt really good the first week I started it. Not so sure right now how the mediations are working for me, but just wanted to update here.)
I have to say, thank goodness for real help.
I have no shame in my emotional journey, and I share it with you.
And, to my beautiful boy, happy birthday!
Posted by Steph in
Blog, Three Years Post-Treatment, on Friday, July 2. 2010 at
Asher is doing well and I need to keep his new healthy life separate from the past sick life.
He currently has MRIs every 6 months, so not often, but I will post scan results under "TREATMENT" (clickable along the top of this frame around the text).
I've gone through and made most of my "feelings" posts from the last two years private so I can read them, if needed, in the future, but I do not want to read them anymore.
The blog will remain up, as a way to reach out to those that may be interested in Head Start clinical trial for a three year old (or those under 6 that do not receive radiation). I am available if you have any questions; just sign the guestbook and I can email you back. I've done this for several people who have emailed me.
Posted by Steph in
Feelings, Three Years Post-Treatment, on Sunday, June 27. 2010 at
But I think that was because I stopped talking, again....
I have found, coming to my own blog, to blog, has become emotionally disastrous for myself....the pictures, the memories....all of it....
I wish I could wish away the memories....the pain....
Found a new doctor, really near my house and her internist is amazing....connected with her right away yesterday....
It is unrealistic to answer What do you want to accomplish in therapy? with, "I want to not remember that time in my life...." Even more, unrealistic, to say, "I wish this wasn't my life."
I thought about this yesterday, after therapy with my new doctor/internist team (and I think I found two wonderful women to work with), that I simply can not answer, honestly, that question What do you want to accomplish in therapy?.
I want to not feel like I'm in a dark hole.
I want to clean the house and not feel like it is too much for me.
I want the memories to not hurt me so deep in my throat and shoulders and chest.
I want to not feel pain when I look at the back of my son's head.
I want to not feel all this anger.
I want to not feel afraid to accept another sunrise because something bad might happen.
I want to be able to read a book about a sick little boy and not have it make me swell up with tears.
I want to be able to go pick my kids up from school, and not look at all the kids there and wonder who will get cancer and who will die.
I want to not feel this fog....this murkiness around me....
I want to clear my head.
I want to play and run and ride a bike, and play games, and teach my kids all the things I have inside me to teach.
I found it really hard to answer another question Who is your support system? I actually, paused, thought, paused, and then said back to her, "What do you mean by that?"
When asked if I took medication, I answered, "Yes, but I stopped F E E L I N G." Then I was asked, something like, How long did you stuff your feelings with this medicine?
I was trying to think back, wondering if she really asked me this, in this way, because I thought could she really understand what I was saying?!
I have been struggling, deeply, about admitting that I pray....if that makes sense at all....this struggle with prayer, and life and death, etc., has been going on most of my life....there is a lot of loss, illness, death in my mind and heart, and it is a struggle. And, I do not believe, as two people have said to me in the last two months, that my pain and heartache are due to the devil. I believe it is because my mind is just wired a bit different and I need help to find much better coping mechanisms. I believe I just didn't get a chance to cry, grieve, process all that went on when Asher was ill, and unfortunately, I don't think I can when I am taking care of four children, four pets, a house and yard....
BUT, with that said, I believe my loved ones on the other side have shown me the way to this doctor....I'm feeling positive, through my tears this morning, that THIS IS IT. They ARE going to help me. I am going to be able to deal with the overwhelming emotions much better. I'm going to take back control of my emotions and life.
At the end of gathering my info, the doctor and internist sat down with me and said they want to do EMDR (eye movement desensitization and reprocessing) therapy with me for PTSD (post-traumatic stress), saying I was a perfect candidate....we start this week, unfortunately she won't see me on Saturdays, but that was too much to hope for. I hope it "works," but I know if it doesn't, something else will, it is just a matter of time.
I'm Trying to remember how the psychologist explained this to me....let me see if I can type in words what she told me about EMDR.
When the trauma event occurred (when Asher was diagnosed with cancer), my body went into survival mode, trapping "pictures" of memories in the right side of my brain (the emotional side). So, now when memories come up, I go into emotional over drive, and can't process facts or thoughts without emotions. What EMDR does, or hopes to do, is move those pictures over to the "fact side," the left side of the brain.
I hope I explained that correctly.
The doctor says, the hope is, that I can take a phone call to schedule clinic without crying, some day, but today, it didn't go so well. I couldn't stop apologizing to Annie for crying only a minute or so into our conversation....
(Edited to add: I won't be working with the internist, though, I'll be working with only the psychologist, starting July 1st. After the first visit with me, the internist asked the doctor to take me as a client because her husband was currently in treatment for brain cancer (currently doing the radiation part of his treatment)!)
Posted by Steph in
Tests, Three Years Post-Treatment, on Wednesday, June 16. 2010 at
Asher's IQ for three areas was between 92-99, so all fine there.
He's below grade level in a few areas...
One area I remember her saying was hard for him was a shopping list....he was supposed to remember a shopping list, and then even cluster the items in the list into categories (i.e. food, clothes, etc). Then after the first shopping list, he had to remember another one....yeah, that didn't go well.... She said that is a sign that he needs to learn math, take a break, work on reading, take a break, and separate each subject like that in order to process.
Memory even looked good, however, a test that has him look at faces and then asks which faces he remembers seeing was very difficult for him. I asked her if it could be due to vision problems (as she said a similar test that had dots was not as challenging as the faces).
She did notice testing anxiety.
She did not see attention problems.
She noticed he is still shy, but he has matured and had no problem having a different gal in the room performing the tests, even when she left.
She highly recommends I do a 504 plan....even just to address his loss of vision.
Next testing is in two years, I think, and she said she only tests ages 2-5 (she did Asher's as a favor and because she wanted to see how he was doing, she said), so we will be with a different doctor next time.
We should have the full report by the beginning of the school year, early August.
Posted by Steph in
External Articles, on Monday, June 14. 2010 at
New Pyrimidine Compounds May Lead to Improved Treatments for Childhood Brain Cancer
"There is still an urgent need to investigate alternative therapeutic approaches that are more effective and have less toxic side effects."
Modified Measles Virus Shows Potential for Treating Childhood Brain Tumors
"Recurrent medulloblastoma currently has a cure rate of less than 5 percent."
Experimental Targeted Therapy Shows Early Promise Against Medulloblastomas, Type of Childhood Brain Cancer
Posted by Steph in
Feelings, Three Years Post-Treatment, on Saturday, June 12. 2010 at
"They also talked to us as the caregivers about how now is the time that the reality of it all begins to settle in and you begin dealing with your own emotions, etc. I have found that to be very true for myself. It's sorta like being on a crazy roller coaster ride - the ride comes to a stop, but you are left sitting in the front row sorta in shock. You watch others zipping along, but your life just doesn't quite "zip" the way it used to anymore. Sorta hard to put into words .......... "
I wish I was alone, in this, meaning no other mommy had to feel what I have been feeling lately, but I know there are so many. Her email to me tonight, this little piece of knowing that I'm not alone, and I'm normal, means a lot to me.
Posted by Steph in
Feelings, Thank Yous, Three Years Post-Treatment, on Friday, June 4. 2010 at
Iím not sure I was doing it for her; I needed to thank someone.
I FELT LIKE I WAS NEVER THANKFUL ENOUGH.
Today I feel like I am not thankful enough.
My son is ALIVE and THRIVING. He is amazing and beautiful and growing and learning and doing so wonderful.
Iím not thankful ENOUGH for this....
Iím in tears....
I feel like I need to give up my life.... Like OK, he survived, now take me....
I never made a deal with God, not that I remember, but the way I feel now, it is sort of like I did, subconsciously.
So, I made a paper-bag card. Front was a picture of Asher from the week of diagnosis, May 2006, and inside a picture from now, May 2010. Then a photo from each year in between were on sheets you could slide out of the inside of the bag. Inside, next to the picture from May 2010, I thanked the doctor for being the very first doctor in our lives to save my son. I thanked her for ordering the urgent MRI after only one 45 minute sick checkup. I thanked her for giving me these extra years with Asher-B. I told her there really is nothing in words that can express what I truly feel in my heart (because there aren't).
I gave it to the gal at the front desk, asked her to put it on the doctor's desk (I didn't want to disrupt our well-checkups with emotion), and as the kids were getting weighed, she came out and gave me a hug and said, "You're going to make me cry at work." And then she said, "I went to 1000 years of school for that one day."
Posted by Steph in
Feelings, Three Years Post-Treatment, on Thursday, June 3. 2010 at
And, when he lost his hair in chemo, I came to LOVE THAT BALD HEAD OF HIS.
But after a year or two, after treatment was over, it became difficult to look at any photo of Asher bald. The big website one, at the top left here, isn't too bad as he has a hat on, but even Asher says, "I look weird" when he sees that picture (I'm sure because no eyelashes or eyebrows).
Last year, after kindergarten was out, I thought I would like his hair being short, so I buzzed it off right when school ended.
Then his left eye started drifting inward, and I had that major scare that his cancer was back....
But it wasn't.
But after his hair grew again, in first grade, I kept the top much longer for him. He liked it that way. A few weeks ago I left it even longer, as he always wanted to comb his hair straight down and close to his eyebrows. So, I actually thought this was my best haircut for him.
Well, today I buzzed off my baby's hair, with a #2 clipper. His hair is naturally curly and just looks ratty in the back after he lays on it, leans on it, sits in his car seat, etc. I was going to keep the top longer but then it was just easier to shave it all. Then I took pictures. He has those same gorgeous blue eyes that Asher and Aubree have. He looks much more blonde with less hair. His head is round. And, he's almost three. And, looking at his picture today reminded me of sick Asher. Not Asher. Sick Asher. Asher has the same chin as the girls, from my genes. Andrew's face is so much like his daddy (comparing age wise), so in that way, he doesn't look that much like Asher to me, but the hair....
"I want a summer haircut, too" Asher says tonight after brushing his teeth. "Just like Andrew's." "Oh, you don't want it longer like this? I thought you liked this longer?" "No, I want it shaved off." "OK, well, maybe I can buzz it off with a #7 then, so it isn't too short and your scar doesn't show as much." "No, I want it just like Andrew's, I like my scar" he says. "Okay, I'll do that after the two birthday parties you have to go to on Saturday and after your two neuropsych test days next week then." "OK," he said.
I guess I'm just going to have to deal with this short hair issue and what it does to my mental craziness.
Speaking of mental craziness, I had a therapy session on May 26th. The first one as an adult (I'm almost 37), on the 4th anniversary of Asher's cancer diagnosis (I actually didn't pick the date, I noticed it after the lady scheduled it for me). It was an extremely emotional 40 minutes. The lady was very nice, however, she is just too far for me to drive. I see I need to go more, and maybe for months, and probably include my husband, so I'm going to find someone closer. I'm in the process of this....as well as the social worker that works with the oncology team is guiding me a bit.... I also bought, from Amazon, a book: "Writing For Emotional Balance: A Guided Journal To Help You Manage Overwhelming Emotions." It should be delivered tomorrow. I can't wait to journal and work with this guide.
Posted by Steph in
External Articles, on Wednesday, June 2. 2010 at
....Patients with cancer of the bladder who were treated with HAMLET (Human Alpha-lactalbumin Made LEthal to Tumour cells), excreted dead cancer cells in their urine after each treatment, which has given rise to hopes that it can be developed into medication for cancer care in the future....
Posted by Steph in
Feelings, Three Years Post-Treatment, on Sunday, May 30. 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.