Cancer Groups- a special message

i was recently contacted by a man who asked to post a message on this blog to get the word out on some information he felt was important.. because all of my past guest bloggers have been family.. i will be honest in saying i put this poor guy through the ringer because i would never endorse certain information.. i finally got around to reading this guest post and some of his personal blog.. and i feel confident in sharing whatever he wants to send out to you all.. he has nothing but postive things to share and this particular message is about fellowship and support via groups...

fyi.. if you would like to guest blog..about cancer and/or loss.. please email me at amberumen@yahoo.com

David Haas is a cancer patient advocate and his blog can be found at haasblaag.blogspot.com/

Have you just found out you have cancer? You may know someone who has survived. Are you in cancer remission? You may be going through chemotherapy or radiation treatment. If any of these things are true in your life, you may feel as though nobody can relate to what you are going to. If you become involved with a cancer survivor group you will have the chance to talk with or write to someone who has been through the same things as you. You can learn how to best treat your disease and get advice from those who have been there, who can teach you how to best fight the negative side effects you may be experiencing.

There are a variety of cancer survivor networks available. The Cancer Hope Network is one such network. Through them you can be matched with someone who has been through cancer treatment, who may be going through something similar to you. This group can match you with people who have gone through anything from a common cancer like breast cancer to a very rare cancer like mesothelioma. You can receive emotional support and encouragement online or over the phone. Actual cancer survivors will tell the stories, will tell you it is possible to live a full live despite having cancer. You will not be talking with someone who is a professional therapist, but with someone who knows just what you are going through.

There is also support provided for caregivers and links to different agencies that might be able to give advice on treatments.

The Cancer Information Network provides links to a variety of support helps to cancer victims, including a letter from a survivor of lung cancer, a link to the Cancer Hope Network, and links to other agencies that provide support. There are also links to sites that give information on treatment, legal issues, financial resources to those with cancer, and support resources for caregivers.

There are numerous other support agencies, including US & Too for those with prostrate cancer at ustoo.com, with links to many support groups, information about the disease, and more.

The American Brain Tumor Organization lists support groups, provides inspiring stories, advice on how to manage fatigue, rehabilitative medicine, speech pathology services, and many other resources.

While having cancer can be devastating, there is help available.

By: David Haas

MIA

this was my brother's birthday cake.. my cousin decided on the picture of him in the bathtub.. no worries..he is hard to embarrass.. and bonus.. the cake was yummy!

so it's been a while since i posted.. a day before his 18th birthday.. a day before i flew out to AZ and surprised him.. not only is he hard to embarrass..he is also hard to surprise... well ok.. he was surprised.. but the reaction was more like "hey what are you doing here?" and not AHHHHH!!! combined with jumping up and down.. and good thing too.. because he is a big guy now.. and i could likely be hurt in the jumping up and down process.. either way i missed him and my family and this trip was exactly what i... or we... needed..

we had a small get together for his day.. my mom hired mariachis and some friends and family came to wish him well.. i have gotten past coming to my mom's house and not seeing my dad there.. i don't look for him anymore.. but as the mariachis sang Un Dia La Ves.. (one day at a time).. my eyes welled up and i frantically looked around.. and expected to see him in one of the patio chairs.. or at the grill.. there was that fresh pain all over again.. the one i pray God eases..memories i gladly accept.. sadness i will take in stride.. but this pain.. this ache in my rib cage and nausea in the deepest pit of me is what i call fresh pain... because that is what i felt when the C word was first used.. that is what i felt again after every dr visit.. that is what i felt on the morning he did not get out of bed and that is what i feel when the ice cold water bucket full of shock is thrown in my face every time i forget he is gone... i am still great.. fantastic even at hiding this pain... i sang and danced to every song the mariachis sang.. when my aunt (during un dia la ves) asked why i wasn't singing.. i calmly leaned over and said "because i'm crying".. instead of crawling into the fetal position at her feet..that was the only down part of the trip.. for the most part we faced this milestone with grace.. and it's never as hard as we expect it to be

after i got home from HOME i lagged.. as i always do.. in unpacking and re-acclimating.. i always allow myself one day to wallow and feel the homesickness.. i had a few job interviews.. in fact..the week before last i was offered a job... so i have a job... well.. technically.. because HR has been just peachy and has left me hanging... it's all good in my hood though.. because this is giving me plenty of time to weigh my priorities and examine myself.. this is not a teaching job but is within the school system and i have had to work out and work on my feelings of bitterness and inadequacy.. i can not go into this job feeling short changed.. it would not be fair to the students i will be working with.. so HR's mishaps are a blessing really... and i has given time to see it that way... in all this mess i have been broken and built up over and over.. i have cried and screamed and let out all kinds of rage i didn't know i had been suppressing.. and you know what? nothing changed..the world didn't bend toward my needs.. and there is a lesson in there too..

and that is what i have been doing since i got home.. examining the things that happen to me and around me.. understanding the lessons it all has to teach me.. what i have learned is this: 1. i need a master's degree and i am seriously considering social work so that i can consult as well as teach... 2. every day is precious time lost with the people i care about the most and i NEED to get home or close to home for good...3. the miles stones we have yet to reach without dad will no doubt be tough.. but we will get through them like we always do..

another milestone

my brother turns 18 tomorrow... and here we are.. another milestone that our dad will not be here for...he got his licence and his first job within this year.. and now.. the big 18..of course that thought leads to everything else he will not be here for.. his graduation.. wedding.. but.. i didn't want this post to be a sad one...

when our dad's dad died i asked him what kind of father he was and if he was any kind of role model for the kind of dad our papa wanted to be.. he said that his dad was more of a provider than a teacher.. and that he wanted to be both.. then he laughed and said.. "heck..if your brother makes it to 18 i will be happy"..and i think.. well.. you did it dad.. you did your job.. and more.. because he may not be there physically tomorrow.. but his legacy will be present in the form of my brother..when i see the man he is becoming i see my dad.. i see everything he instilled in him..i mean..ok..my brother is far from the man he will someday be.. but i see glimmers and hints.. and i don't worry about him the way i would have before.. i see his potential and i see his heart.. and both are beautiful..

so what now brother bear? what's so big about 18? well here is a list of things you can do after tomorrow:

Buy tobacco

Change your name

Get a tattoo

Get a piercing

Work more hours

Sue someone /Be sued

Purchase liquid white out

Pawn something

Get married/Get divorced

Adopt a child

Be on Jerry Springer

Buy a lottery ticket

Get a hotel room

Call some "900" numbers

Go to a night club

Get a Sam's club/Costco membership

Skydive

Sign legal documents

Gamble

Get a loan

Buy insurance

Donate blood

Enlist in the military

Be convicted as an adult

Become a stripper

Vote

Obtain a credit card

Buy a monkey (w/ a license)

ok.. i didn't say you should do these things... but i totally support the monkey thing!

Book Review- A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying

A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying

by Donna M. Authers

A & A Publishing, 2008

This is another book that I read to ready me for volunteer work. I started it a month ago but just recently finished it. It was a tough read. So much of it reminded me of my papa that I had to put it down almost as soon as I picked it up. It was difficult to remove myself from it and I didn't want to read it in that mind set. If i say here that I was able to read it and not cry or not think of my dad, it would be a lie.

In this book Donna gives practical advice for any caretaker, caregiver, friend or family member of a person who is dying.

This advice and wisdom comes in the form of personal stories, scripture and practicality. Donna talks about many of the losses she has been through in her life but the one that resonates throughout the book is the loss of her mother. From the moment when her mom learns that her brain tumor is inoperable Donna and her mom begin a journey. Their honesty with each other is beautiful and raw. They struggle together to find meaning, God and closure. What they find instead is strength.

The toughest parts to get through in this book are the conversations and letters shared with each other. It is hardest to keep the tears at bay when her mom says she feels like she is detaching, like she is here and there and the same time, so she knows it is time. Any book on death and grief will tell you that at some point the patient will detach emotionally but to see/hear the words is heart wrenching. In the end Donna's mom passes with dignity and in the most ideal and beautiful way. Subsequently Donna was left with "good grief". This was a wonderful read simply due to the best of a bad situation experienced by the author. Her lessons are very much worth reading, and learning from!

on God.. and faith part 5

so it's been another time of struggle for me.. i keep praying for patience.. i am seriously lacking.. still no job.. still looking.. still feeling rejected and worrying about student loans and money issues.. and i am trying to have faith that God will provide and will put me where i can be of use.. i read the sermon on the mount for the first time the other day or should i say night.. because i haven't been sleeping.. in it Jesus says "Or what man is there of you, whom if his son ask bread, will he give him a stone?"...

because i am not sleeping i have gotten into this habit in the deepest darkness of the night.. to call up a vision of my dad.. i mean to the very last detail.. i can see every line in his face.. i can see him from the side with his head bent in thought.. i can see him smile and the crinkles in the outer corner of his eyes.. i can smell the mix of dust and leather that clung to him all the time..i see his hands..the callouses and strength within them.. i hear his voice.. his laugh.. i am so terrified of forgetting him that i force myself to do this.. all the while feeling daggers in the pit of my stomach... because i can't hug a vision..when i finally do fall asleep i dream of him... lately my dreams involve goodbyes.. like he is visiting me in Michigan and before i take him to the airport i hang onto his neck and won't let go.. i tell him i love and will miss him and whatever will i do without him.. i tell him how important he is to me.. and i cry and he just holds on to me... i think in my dream i am saying all of the things i should have said to him.. he says it will all be okay.. in this recurring dream i fall asleep instead of taking him to the airport and when i wake up he is gone.. and there is that emptiness i feel when i'm actually awake.. this lost emptiness that comes when my mind remembers he is gone... my mom has shared with me that last week was a tough one for her.. she was feeling it all over again.. grief comes in waves.. we know.. but this was like living through it all over again..it's normal... doesn't make it hurt any less does it?

so because i find myself praying every night and day when i am at my lowest, i think about my dad and his prayers... and today i decided to share something with you all.. what i really want to do is talk to him.. call him and remember the story with him.. maybe talk about faith.. and have those beautiful long philosophical conversations that we used to... i wrote about my dad's faith and what we struggled with when my mom first gave her life to God in this post On God And Faith part 1 some of my favorite conversations with him were while my mom was at one of her bible studies..we talked about prayer and whether it was just collective good "vibes" being sent to someone in need.. and could that healing power be dismissed if we didn't call it prayer.. because sometimes that word scares people.. but somehow "vibes" doesn't...and then there is the dinosaur story that i wasn't going to share here.. but like i said.. this is my way of talking to my dad too..it is my favorite.. and encompasses so many sides of my papa..

one night when my mom was at bible study my dad called me, like he normally would.. sometimes to talk about the weather or just to say hello... at the time he (we) were kind of feeling a little left behind in my mom's new journey.. she wasn't home much.. and my dad was catching glimpses and snippets of conversation.. he attended a few bible studies but this night he said he could never be baptized...i don't hide my worry about religion, denominations and such.. so he knew how i felt.. but proceeded to tell me "they don't believe in dinosaurs!" what? haha "dad, how can they not believe in dinosaurs?" he went on to talk about the evolution controversy and the belief that the earth is not old enough to be dated back to when scientists date dinosaur fossils...and that he just couldn't deny hard proof for faith... NOTE: i have yet to ask anyone within my mom and dad's congregation if they believe in dinosaurs.. this was simply his deduction from things he'd heard..anyway.. we talked for an hour about this dinosaur issue admittedly giggling at the thought of denouncing their existence.. i mean.. seriously?

so, about a year and a half later my dad is baptized and i call to talk to him.. to set my own mind at ease i needed to know.. was he tying up lose ends here? was he scared? what brought him to this decision? (at this time he is sick and not doing well).. he says it was just something he felt he wanted/needed to do.. he had been attending church and bible studies for some time before this.. this was not an abrupt decision..then he cupped his hand over the phone and whispered.."but ana marie.. i still believe in dinosaurs!"... ha! i laughed and cried.. but mostly laughed.. cause that is my dad for ya!

God i miss that man... today and every day.. i wish more than anything he was here to help guide me in my struggle with faith.. and my search for a relationship with God.. i think he would understand me.. i know he would..

forget everything you THINK you know

i spent most of my evening yesterday feeling angry, frustrated, rejected, and sorry for myself.. i am doing all that i can to find a full time job.. i have student loans breathing down my neck.. my husbands truck is falling apart quite literally.. subbing is just not going to cut it this year... and after countless resumes and applications being sent out.. i have heard nothing.. if you have ever looked for a job to no avail then you know the frustration and ultimate feelings of "what is wrong with me?"..and i don't know why but i keep feeling like if i could just talk to my dad then i would be okay.. silly i know.. cause really and honestly i wouldn't even tell him how i was feeling.. but if i could just hear his voice i might know that it's all going to be okay.. that's what dad's do.. they make everything okay.. even when they don't know they are doing it...

so i prayed.. and cried.. and resolved to "keep the faith" and know somewhere in the depths of myself.. that we will be okay in the end.. that something will happen.. something will come up.. some employer somewhere will realize how amazing i am at my job and hire me.. somewhere there is a classroom of really lucky kids that will have me! ok.. so i don't know this.. and today i am not this confident.. but.. fake it till you make it right? i read in this book i have been reading that if you just pretend to have faith..then God will take care of the rest.. He will take your doubts, fear and anger... in the same book i read that when we are at our lowest and struggling with our own pain, focusing on someone else would help... so i was blessed with a wonderful distraction/ message a few weeks ago (ok like months ago)..and it deserves attention...as do you all dealing with loss.. for this woman in particular and her family.. this loss happens to be a diagnosis..

there is a loss/grief that comes with diagnosis.. you see in our lives we tend to looks ahead.. we have visions of perfect futures...and a cancer diagnosis throws that whole thing off the track.. so not only do we deal with the reality of mortality but we also begin to mourn that life we thought we'd have.. even when a person survives cancer..the future is not the same.. sometimes is it even more amazing.. but not the same.. and we certainly can not see that even more amazing future when struggling with mortality...

so this particular message sent to my facebook inbox started with "i am not a creepy stalker" and who can resist reading a message that starts like that? anyway turns out that her husband was diagnosed with stage 4 kidney cancer earlier this year and she looked to the web for information and blogs that would help in some way.. she asked for any words of wisdom/comfort and spoke of her kids (adult children) who seem to all be dealing with this in their own way..and struggling in different ways..

this got me thinking of my own family.. truth be told we were not all on the same page in dealing with papa's diagnosis and deterioration...i struggled to be the strong one.. the logical one.. the one who needed to see scans and find any and all information i could.. my brother refused to hear anything unless it was positive.. i won't ever call it denial.. it was what he needed.. to know that there were possibilities and hope.. my mom controlled what she could.. she forbade the hospice workers to talk about death in any way.. and they sure did hear from her when she was defied..she tried to control his diet and anything else that she could.. because everything else was out of her hands... others in our extended family were angry.. other's avoided.. other's urged him to fight until his very last breath..and my dad.. well he took it all in stride and in faith.. i am sure.. i am positive he was scared, angry, and just as bewildered as we all were.. but he truly held us together with something as simple as a smile..

so i compiled some things that i want this woman and her family to know..

1. first and foremost find God..accept the strength that He has instilled in all of us.. it's there you know.. we just aren't always aware of it until we need it.. when you find the strength to get out of bed and do it all over again.. when you find the clarity to listen to the doctors.. that's God..

2. forget everything you think you know.. no amount of books.. no amount of advice.. nothing. can prepare you..

3. respect each other's differences.. understand that we all do what we need to do..it may not be what you feel is the "right" or "best" way.. but you will all get through it.in your own way.. no matter the outcome..

4. be positive.. understand that this is actually a gift of sorts.. it's one we would all like to return.. i know.. but it's a gift none the less.. all of us will face the end at some point.. but we don't always know when that will be.. God is sending you a message.. listen, He says... i may not take him today or tomorrow.. or for another 40 or 50 years.. but some day i will.. and this is your wake up call.. head that warning.. and cherish every moment you have with each other.. even if you have another 50 years together!

5. reach out.. find someone, anyone you trust to listen to you.. there are so many things you may not want to say out loud.. write it down.. get it out... and know that friends, real friends, can take whatever you give them..this is a stressful time for you all and holding it in can and will lead to physiological issues.. i lost my voice.. literally.. from holding it all in.. i could barely squeek and croak for a week!

6. never accept.. "i know how you feel" because no one does.. not your siblings.. not your mom.. no one knows how YOU feel... you each have individual relationships with your dad/husband.. don't feel alone in this.. relish in it.. own it.. but find those who simply listen.. not commiserate

7. SLEEP!

8. did i say sleep? get your rest.. you need each other at your bests.. so pop a benadryl or see your dr for something if you need to.. just get your sleep!

9. one day at a time.. that was my dad's favorite song to sing in church.. and it's the most we can do.. take it one day at a time..

10. and finally some thing for the man at the center of this all: in the face of surgery.. you swallowed hard and did it.. in the face of a very difficult treatment.. you balled your fists and resolved to do it.. continue to fight.. God will meet you in the middle.. you are still Dad.. so continue being Dad.. you are still a partner.. so continue giving the same support that she gives to you.. and do what you need to do for you..you are in charge.. you hold the cards...not even a monster as terrible as cancer can take that from you!

the easy way out?

last week my cousin committed suicide...i didn't know him well.. he was on my dad's side of the family and if you are a repeat reader then you know i am not as close to his side of the family and struggle with some feelings in regards to that topic... in fact the last time i spoke to him he didn't know who i was... it was after our grandfather's funeral and he was standing alone in the corner.. he felt bad that he knew my brother (who doesn't know my brother) but didn't know me.. he asked "do you know anyone else here?" which was funny because in truth i didn't and neither did we... we knew my aunts and uncles.. and a few cousins..we made snide comments about how people use funerals for family reunions and it was sad that many of the people there would not see each other till the next one (turned out to be my dad's).. this was in direct reference to my brother's speech (mini eulogy) during our grandfather's funeral.. you see my brother had gotten close to the family as he accompanied our dad while he cared for first his mother then his father before their deaths.. which is where the sense of abandonment and anger came from latter.. but i digress.. this is about our cousin...not us..

so my mom called to tell me last week and there was shock.. no i didn't know him well but i have always understood him to be a solid man..one who fought for our country..i called my uncle to give condolences and by chance spoke to a grief counselor who opened my eyes to this whole subject.. i needed help wrapping my mind around it all.. i felt so bad for the pain that his family must be feeling.. as well as the confusion and subsequent anger and guilt associated with being a surviving family member...i tossed and turned one night because i just keep thinking about what kind of inner pain and turmoil he was feeling in order to have taken this step.. i mean.. we all know what it's like to want to throw up our hands or not get out of bed.. so imagine that pain multiplied..

this weekend i also found out that another person, in the same city as my cousin, took his life as well.. this man barricaded himself in his house and called the police.. the swat team was sent out to no avail... the man shot himself.. at the end of the news story people left comments.. most were to the effect of "suicide is selfish" or "he just wanted attention" or "he took the easy way out"...hurtful terrible comments... it turns out this man fought for our country as well..the comments made no sense to me.. didn't the people saying this hurtful things have any amount of empathy to consider the victim and what a painful decision this must have been?

so in thinking about this and talking to the counselor that i ran into i learned that there are so many myths out there and general feelings about suicide..

Suicide Myth

People who are suicidal definitely want to die.

Suicide Fact

The vast majority of people who are suicidal do not want to die. They are in pain, and they want to stop the pain.

Suicide Myth

People who are suicidal do not seek help.

Suicide Fact

Many people who are suicidal reach out for help.

Suicide Myth

People who attempt suicide are weak.

Suicide Fact

They are in pain. Many people who are very "strong" die by suicide. (www.suicide.org)

so are we seriously going to judge people based on a last desperate action? are we going to consider them weak? my cousin and the other man who died in the same week fought for our freedom..they both saw and experienced things we will never understand... they more than likely did not come to this decision lightly and sought help in some way.. they did not want to die.. they just wanted the pain to stop.. and not being able to understand it ourselves does not give us the right to give them any less respect..and families should not have to hide in shame.. and guilt.. simply because society condemns them as well.. maybe instead of judging we should be trying to better understand why..we are busy finding cures for cancer..but this is just as serious an epidemic..

just some thoughts in respect and memory of Travis Berumen