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
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.
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.
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."
"Here are some obvious things about the weather:
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 - CNN.com
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."
http://www.cnn.com/2012/08/22/living/going-public-with-depression/index.html?hpt=hp_c2
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.
BUT
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.
BUT
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.
.
dear angie, i am so very sorry for what you are going through and wish with all my heart i could say something to comfort you. but i know there just are no words...
ReplyDeletethe good thing is that you have a therapist who is knowlegable, compassionate, and is moving you toward positive steps to give you some relief. and you should be really proud of yourself that you asked for help. those articles say some powerful words, and i hope they at least make you feel you are not alone, and that there is real hope to help you. and you are right - no one who has not walked in your shoes can ever truly understand what you are feeling, being the mom of a child with cancer. you are living every parent's nightmare, and i know it must be complicated with always feeling you might be on the edge of the ultimate parent's nightmare.
the losses you have suffered, layer upon layer, are cumulative in the pain and fear they leave in their wake. and yet, there you are - a true survivor, doing the best you have been able to do for tanner all this time.
now it's your turn for other's to do their very best by you. you have taken the first step, and my hope is that it will bring you comfort and hope.
as to the professionals who will not accept tanner's insurance, perhaps there are other avenues to pursue. most major newspapers have medical journalists on staff. they may be a resource, first to tell tanner's story in their newspaper, with the emphasis on how young he was when he was diagnosed, then with what he is now suffering, physically as well as financially. other local media, like TV news channels may also be a resource to get tanner's story out there. i would also recommend contacting public television (your biggest city nearby's PBS (PUBLIC BROADCASTING STATION). the idea being, that maybe someone will be moved to provide financial support, further referrals to entities that would help tanner free of charge, or be able to glean info about his case which would spark interest in trying to help get him connected to better treatment, more effective diagnostics, and pain relief. it also might help when seeking out journalists and other media sources to have your blog printed out in it's entirety to present to them. also, there is a site on line called, "being cancer network", with lists of blogs - look for lists such as mothers of children with cancer and see if there is anyone who has reached out and received help from outside resources. the name of the person who started "being cancer network" is dennis, and i recall that there is a way to contact him if you click on his name on the left side of the site. you might ask to be a guest blogger to write about tanner's and your current status, and find help that way. i hope that others who read your current post will have additional, even more effective ideas. having help with some of the financial as well as emotional and physical issues could bring enormous relief. i realize that you are struggling every day just getting through the basic routines of life. but maybe you have friends or contacts who can help you do whatever you decide to do to raise awareness of tanner's (and your's) plight.
both my husband and i have cancer. our mantra is one word - "BELIEVE". we will be believing for you and tanner, and keep you close to our hearts believing that soon things will be better. love and hugs, karen sutherland
I can't tell you how much your kind comments mean to me. I can only imagine what you and your husband deal with every day with both of you having cancer. You humble me. I send loving thoughts your way.
DeleteKaren: You always know just the right words to say!!
DeleteHope you're doing okay.....
Dear Angie, What an awesome post by Karen. I don't think there is anything any better than what she has expressed. You and your family are in our thoughts and prayers to find some relief through all of this. My husband has MM also - some days are ok and others not so good. I have learned so much from you this last couple of years. I didn't know what MM was little alone what a rush of emotions that went with it. I thought something was wrong with me. Why wasn't I handling it better. Was I not good enough, was I not learning enough on how to find the best medical treatment, fixing the right foods he would eat, getting the meds all straight, paying the bills, and keeping the house up, and working full time. I was so tired. But I knew what you were going through also. I thank you so much for your blog. I could relate in my own way. I thought if she could do it -- so could I.
ReplyDeleteI pray that you find healing for yourself. You are a good woman and a good mom. You will make it.
Another thought go to the American Cancer Society web page. Patients that qualify with MM can get up to $10,000 a year from what I have read. That might be an avenue you didn't know about.
Again thank you for being you.
Terri, thank you so much for your comments.. I sometimes forget that others besides my family and close friends read the blog. It touches my heart to know that youve been reading my words for a couple of years now.. MM is a journey that none of us could have ever prepared for. Again, thank you... Your words touched my heart..
DeleteDear Angie - Both Karen and Terri have said much of what I might have done, except I will add that I am intending you are finding the combination of therapeutic support and friend support that gets you through these exceedingly tough times, and also that you are finding the financial solutions needed for Tanner's care, and this IS for the highest and best good of all concerned, so be it and so it is!
ReplyDeleteThank you Sandy for your kind comments.. You've often taken the time to reach out and have been a comfort to me... Knowing that others care makes a big difference in the times of darkness..
ReplyDeletehello Angie,
ReplyDeletei wanted to let you know about an organization called, "Imerman's Angels", which pairs a cancer survivor to be a mentor to a cancer patient for
1-on-1 support. they also pair cgs, family members, and friends touched by a cancer patient. Jonny Imerman started the organization after having a devastating cancer as a young adult, and noticing there were so many other young adults that were isolated and without support they needed; they were also the most under-insured patients. Jonny has been recognized as a CNN hero, and you can read his story and more about the "Angels" group on their website - www.imermansangels.org there is a blog, and current news about their benefits given to raise awareness and raise money for their federally registered non-profit organization. they provide pairing for individuals all over the world. take a peak, and see what you think. warm hugs and good luck to you, Tanner, and your family.
Karen Sutherland
Angie,
ReplyDeleteI know what it's like to have a life marked by hard times, though yours has been much tougher. Having a child that is sick though, and feeling so helpless, is something that NOONE should have to go through. I think you have to be gentle on yourself and not beat yourself up for feeling as you do. Getting help and guidance is a good idea, but this is normal for someone whose son has cancer. Please don't think you are not being "normal"
or doing a good enough job of hiding it. We all put on the game face BUT WE ALL have our breaking points. There is only so much grief one person can take without the steam valve releasing some of it. I hope things improve soon. And, every back pain is not MM. My husband had a back issue 2 years ago that literally had him crawling on the floor. He could not bear any weight on his spine. He was in agony. Tested him like crazy, it had nothing to do with the MM. Tanner's situation is most likely from prior damage. Hope you can find a pain specialist that you can work with soon. Prayers and support to you all coming from Jersey.
Thank you so much for taking the time to reach out to me. The kindness of others these last several years have never failed to touch my heart.
DeleteAngie: Oh honey, so many of us identify with you and what you are experiencing.....it's just that our loved one isn't our young son.
ReplyDeleteI also have down days (I call them my "pity me" days), those days when my honey doesn't feel good, or is in pain (even though he's in CR).
Thank you for sharing your innermost feelings with us. And thank you for looking for assistance, for yourself.
Karen has given you some great ideas. I certainly hope Tanner can get to a PMS (Pain Mgmt Spec).....it will help loads.
Hugs.....
Thank you Sarah... I think of you and your husband every day...
ReplyDelete