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#21 Tedsey

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Posted 25 March 2011 - 09:13 AM

I so understand about dealing with depression.  I have dealt with it most of my life.  When I was diagnosed, instead of saying "Why me?"  the first thing that rang in my mind was "It figures!"  It is hard to strike a balance between being so into yourself and healing (or just dealing) and not always being able to be available to your family.  Like HeatherZ, I have two young children.  I often wonder how this illness and associated problems, (physical & mental), are effecting them.  I have not plunged into a deep depression in years (even the CML dx didn't push me that far into the deep, dark hole).  However, I lost it yesterday.  It was even before I received the call about my pap smear coming back with a little dysplasia (more or less, abnormal).  But more on that later.  It could be nothing.  And it is nothing until it is something, right?  But after such a bad day, I let out a wail.  I had been holding it back for hours.  I had to bring the kids with me to an oral pathologist and they sat on the floor at the foot of the dentist's chair eating candy while the doctor looked at my gaping mouth sores--I really believe if I wasn't sick, I could do a better job of keeping them away from sweets, but it is often, "If you sit quietly and behave, I will give you a sucker.").  I have had to drag them with me to so many unpleasant things.  They have seen me get shots, give myself shots, get my blood drawn, they pretend they have terrible mouth sores when I am afflicted, they have seen my eye fill with blood, etc.  Many times I can find someone to watch them, but often I have to run last minute (problems that arise from this illness are not always conveniently timed) and I have to bring them.  So, when Heather mentioned her kids and sharing a drink, it got me thinking.  After my son and daughter tried to make me feel better by comedy and forcing me to lie down with a stuffed duck (my 2 year old is always the doctor--but I have to talk to her about her bedside manner), so, when I got under control, about 10 min. later, my son let out a similar wail.  It was different than his usual toddler whining.  The cry seemed so deep and soulful.  And I know this is effecting them, but they are too young to understand at 2 and 4.  I have wondered when I should seek some help for my son.  Perhaps now is the time.  Especially, since there is a bit of static in the air over the biopsy I need to have in April (uggggh, not another cancer!).  It is difficult to hide the tension and sadness.  No.  It is impossible.  I think the reality of the situation is that my kids will have to deal with the cognizance of suffering a little earlier than most children.  As a mother, it is my greatest agony I cannot protect them from that.  But I pray they become better humans as a result.  I grew up in poverty in an extremely abusive household (both verbally and physically--i.e. the police came a couple of times).  I had a parent who was chronically ill most of my childhood and died fairly young.  Although a little depressed, I think I am not such a horrible human despite all that.  I guess I have to just trust whatever will be and let go (now I think I understand why people say, "Let go and let God."  I confess. I always thought it was a goofy phrase, but I think I get it).  As a friend made clear to me, we have very little control over things that happen in our lives.  It has been very hard to embrace this.  Reality is a bitter pill to swallow.  And maybe the kids will be alright.

I wish everyone more relief and more happiness,

Teds



#22 grannyd

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Posted 25 March 2011 - 10:32 AM

Tedsey, I can relate to all you have been thru!! Had to have emergency hysterectomy at age 33 with two boys age 5 & 2!!!! I too had a bad pap smear, all came back good tho, as I am sure yours will!!! Came from a VERY dysfunctional family!! Father an alcoholic, mean & abusive, and a very strick Irish Catholic mother & her whole side of the family living very close!!! enough said.So  I have had depression before the CML, then both my sons enlisted in the navy 2 months apart they left one in Oct. & the other 1 week before Christmas, another bad time, then both overseas in IRAQ, one for one tour & one for 2 tours!!!! Another bad round, never have fully recoverd & so---- Now the CML!!! This road is very bumpy we are on, i pray for less anxiety, depression, & the strength to get thru every day, not just for me, but for all of us on this journey!!!! Prayers to all, grannyd



#23 Tedsey

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Posted 25 March 2011 - 02:44 PM

grannyd,

Thanks for your kind words and sharing your struggles too.  Life can be very tough.  And here we are on the CML discussion board baring our souls and still "hanging in".  I am sorry you had such a rough life too.  I heard once that you work out things in nightmares so you can handle the things you experience in life.  It is kind of like "rehearsing".  So instead, we have had to work things out in "real time" instead of "virtual reality".  Sorry, my BIFs, bad joke again.  I am no PhilB.  But going back to suffering, I hope we are all the better for it.  Hope your sons are home and safe.

Take care,

Teds



#24 Guest_billronm_*

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Posted 25 March 2011 - 09:13 PM

Hi Susan,

We all hate to say this but welcome to our group. I was dx august,4 2007, I was on Gleevac for over 3 years I just switched to Sprycel in Nov. I feel much better on Sprycel. Gleevac just gave me too many GI issues our term for that is shart,all I did for 3 years on G was shart shart shart. Sprycel took care of that right away, i don't shart anymore, now I just Fart a lot. These ones are silent but deadly. If it happens to you when you're around people just stick your nose in the air and give everyone around you a dirty look. Works like a charm.I'ts even better if you have a very elderly gentleman around you. I haven't figured out how to get away with that on an airplane! This is a wonderful group of people. I just found this site in Oct.You can talk about anything and not be embarrased by it because we all have done it at one time or another. Somebody told us last week that french kissing is good for mouth sores. I think everybody tried that one. I haven't heard any results yet. I sure hope they're not peeing on sticks this week.I'm just a tad bit older I tried the kissing, all I got was snoring and the dog trying to push me out of bed. Or maybe my dog was snoring and my husband tried to throw me off the bed. It was dark so I can't be to sure. I haven't been on for a couple days I was just bummed out and so tired.But it sounds like everyone else feels the same way. It is so great just to be able to talk to, that understand what we are going through,and it isn't a temporary thing we have to deal with it the rest of our lives. I don't know how they deal with small children and jobs.My hubby and I are both retired. I am so lucky he really helps me out so much. He tries to understand what it's like. Most people don't even try.

Anyway we are not a depressing group. We discuss issues that we have but we're not morbid or anything like that. And just knowing that others have had the worst thoughts or problems like we do keeps us from feeling alone. Sometimes we start talking and someone will say something funny then of course we all have to chip in.

We started a soap opera called days of our sharts I can't remember the name of who started it he was a new friend. That discussion is still on the board. The man who started it  has a suit of armour beside his discussion. Oh my god I just thought of something his picture is a suit of armour and he is having major problem with the sharts. He is very descriptive,Maybe if he got rid of the suit of armour he wouldn't have so many problems. I could never wear one while I was on Gleevac.

                                                           Welcome to our group we're not sick we're special           Sincerely Billie



#25 Guest_billronm_*

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Posted 25 March 2011 - 09:17 PM

Dear Susan,

His name is augustfirst2010,

He is still on the board.                           Billie



#26 sferrazza

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Posted 26 March 2011 - 08:54 PM

Thanks Billie,

I had the sharts too being on gleevec.  I thought it was just me having sphincter problems with old age and I'm only 44!  I'm on vacation right now for spring break and off all drugs until Monday.  It's so great not worrying about whether I ate or not and what time I need to take a pill.  I wish that I wouldn't have to take any cancer pill again! 



#27 Guest_billronm_*

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Posted 26 March 2011 - 11:47 PM

Dear Granny D,

You must have read my mind.I am in the same rut.Hopefully when we can open our doors and windows we'll feel better.I agree with you if we didn't have this site we would be in worst shape.I'm going on 4 years and I still haven't accepted my cml and I feel so guilty complaining when so many other people are going through much worse. But you know we also have cancer and we have to fight it everyday. There is no cure for what we have.Our lives will never be the same. A lot of cancer patients who are in bad shape pray that their suffering will end. I went through that with my 2 grandmothers and my dad. And when they finally went it was a blessing,they aren't suffering any more.I can see me planting my flower bed put one impation in and take a nap.I figure by August I might have everything planted. I cleaned my bathroom floor yesterday and I had to take 3 breaks.Why do we run out of gas so easy and the dr.s tell us we are doing great? I just wanted to let you know that we are in the same boat for awhile. Did you read yesterdays posts? We're all going crazy. Please take care and remember we all feel like shat just like you do.

               Best wishes Billie                                      A couple days ago I had the worst Panic Attack I have had in years. It just came out of nowhere.



#28 Guest_billronm_*

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Posted 27 March 2011 - 12:55 AM

Hi star,I can't pronouce half the names anyway,

I wish I was with you where are you? We have all found out that a few days off Gleevac or any tkis won't hurt you. You enjoy spring break and maybe we'll meet you next year. My Hubby has 2 sisters on Sanibel and 1 Brother in Ft.Meyers. His Brother is head of maintence at Diamond Head. Boy the stories I could tell but I'm not aloud too

   I guess I have to wait until he retires.

                                                                    Have a Margarita on me and remember it's always 5:00 P.M. somewhere\

                                                                                              LOL Billie



#29 grannyd

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Posted 27 March 2011 - 08:59 AM

Thanks for the reply Billie!! It does seem like this boat is getting VERY FULL!!! Tired & depressed seems to be the normal, maybe it's the weather too, Ohio is very cold &gloomy, I always looked forward to spring, flowers & warmer weather. This year is a different thing, don't really look forward to anything. My husband is so good, always wants to know if there is anything I want to do, always the same answer, too tired to do anything. And, sleeping at night is really off. Short naps in the afternoon, in bed by 9 P.M. awake by one and toss and turn so up by 4!!! I decided to start taking my Tasigna at 1A.M. & 1 P.M. That is working really good for me, since I am awake at 1 A.M. anyway. Eat breakfast early, snack late morning, fast from 11, take Tasigna at 1 P.M. able to eat regular evening time about 7, light snack before bed.Oh well, guess I just need to vent about being depressed, sorry to everyone reading this. All my blood work was good agin this week, that is good news. I don't know what I will have done in April at the Cleveland Clinic since it will be my 3 month check up there. Dr. Advanti started me on Tasigna when I went to Cleveland, said my wbc was 38 so I should respond well to Tasigna, since then all numbers have been good on weekly blood work, seems like I am just waiting for the other shoe to fall, what an outlook I have:`(  I know I should be happy, and I want  to soooo bad, I just can't seem get excited about anything. Thanks for listening, hope everyone has a good Sunday, prayers to all, grannyd



#30 lala

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Posted 27 March 2011 - 12:24 PM

hi, Grannyd, i think how you feel is normal--------it takes a long while to adjust and to reach your new normal and to become settled at that new normal!  five years ago this month, i was diagnosed after being absolutely exhausted for 2 years.  thank god a new doctor finally listened and didn't tell me all working moms were tired!!!  :-)  cuz they are!!!!!!  my best friend had to convince me that my exhaustion was really off the charts!  two weeks before diagnosis, i was sick and on the couch....then diagnosis and still on the couch ----I WAS ON THE COUCH FROM JANUARY TO NOVEMBER!  yikes...that is a very long time.  in sept., i did go back to work for 2+ hours a day and then back on the couch for the rest of the day.  5 years later, i still work a few hours a day and am so glad to get home where i can tinker around and sit when needed.  i don't even cook anymore.....soooooo you see, my new normal is very different.  i used to teach all day, and we moved and danced to learn our lessons---no more.  during the first 6 months, i was too tired to care about anything---i followed my docs advice and didn't even know what to expect and when!!!!!!!   sometimes i think it was better to not know what was ahead----i was very lucky and responded beautifully to gleevec lab-wise----side effects-like fatigue are not so good---that is why i had to change my life.  when diagnosed, the docs threw out the 7 year mark-----my youngest was a freshman in high school---all i wanted was to hope to see him hit 21........now i know----i will see many more years!  i just have to settle for this new normal.  some days it makes me sad----i used to have sssooo much energy......so, give yourself time and remember, good days will come back after the bad days cycle through.......happy sunday to you!



#31 Guest_billronm_*

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Posted 27 March 2011 - 11:38 PM

Dear Grannyd,

You never have to apologize for going through a rough time. Thats why we're all here.We all know how it is.There are pills for every thing else, why not something for just us. Nerve pills and Antidepressants help but we need more I don't know what.

Maybe some kind of a stabilizer so we would'nt have all these ups and downs. It's so frustrating when we have 1 or 2 good days and then we overdo it and we have 3 bad days. Friday I cleaned my bathroom floor and I had to take 3 breaks I just have a small bathroom. Last week I vacuumed my entire house I had to take a nap before I could finish it. My legs don't want to hold me up and I get so short of breath. Then I'm worthless for the next 2 days.

              Oh well as long as we have each other we'll be okay.I'm in Pa along Lake Erie so I know what you mean about the weather.

                   I hope you have a better day tomorrow   LOL Billie



#32 dee145

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Posted 28 March 2011 - 08:11 AM

March 6th was mine and Thank God we both left that other oncologist behind.  He shouldn't even have a office.  I found out he was "dismissed" from a previous drs. office, that's why when I looked him up on here he had 2 office locations but the other one sent him packing.

The last 3 weeks I think I have cried so much that my tear ducts have to be messed up and I can't even tell you why I am crying.  I will just start for no reason at all.  I am on a anti-depressant but the water works have been flowing like crazy, my husband will say "what can I do for you" and I don't know cause I don't know why I am crying to begin with.  I told all my friends I would probaly end up in the psychiatric ward so i would let them know my room number so they can visit.  I am going to talk to some one on Thursday but will see if it helps but i am tired of it.  Hope it gets better for you too.

                                               Dee

March 6th was my 2 yr date but the first year I don't count cause of the idiot dr. I had.  He almost killed me and now I am PCRU since July of this year.



#33 jrsboo

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Posted 28 March 2011 - 11:31 AM

@ Dee,

Me too!  I have been crying AND having what might be panic attacks.  I am not sure.  I ws in the grocery store and became overwhelmed by the huge amount of choices I had for a loaf of bread.  And just got scared.  Husband asked how to help, and I just said let's get out of here, and hold my hand.  Two days later he was at work and I panicked at home, just went to bed and stayed under the covers for a couple of hours. 

Strange.

Today seems fine so far. 

Caroline



#34 Guest_billronm_*

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Posted 28 March 2011 - 10:26 PM

Hi Dee,

I have suffered from clinical depression for 30 years. Believe me I know how you feel. My dx comes from heredity, my mom, granmother just about everyone on my moms side has had some kind of problem. I have had many ups and downs through the years. I seem to have my worst times during the change of seasons. I am having trouble right now with spring coming I should start feeling better. And Summer seems to be the worst for me. I used to love summer. I think that the reason is during spring and summer we feel like we should be spring housecleaning and planting flowers get out of the house more. And we're just to damn tired to do all those things between Depression and cml I'ts hard to get out of bed. But we feel like it's expected of us, and we don't want to do it. Unless someone is going through what we are they don't understand. We look healthy we laugh and nobody sees blood so they think we are normal! Ha. My husband loves being outside and planting a garden or painting the house he never stops. And he is so wonderful helping me with everything right now. He thinks I will feel better when I can get outside and do things.He's already getting my flowerbed ready. I don't want no xoxoxoxo flower bed. Every day he takes our dog for a walk around the block it's one half mile. Everyday he wants me to go. I probably won't make it to the corner.I am on 2 antidepressants and I have Xanax for panic attacks. I have had a really good psychiatrist

and good therapists, so I am very lucky. It sounds like you are doing the right thing.I probablly have been on every antidepressant they make. It takes a good 8 weeks for an antidepressant to fully get in your system. They don't solve your problems but they make it easier to cope with them. And a good therapist will help you a lot. No pity party there if you say something negative they point out the positive part of the problem and It does get your thinking in a different perspective. If you don't like your dr or therapist get another one.I went to a few that were in worst shape than me. What I'm getting at is keep getting help with the depression and you can cope much better with the cml. And always try to keep your sense of humor. I'm Irish so I can't help myself.   If all else fails I'll see you in the looney bin. I was hospitalized twice for depression, you get no stress lots of good therapy talk to people who understand and get to be monitored on a new med they have you on. It is a totally separate wing of the hospital. I met doctors lawyers ceo's I even ran into the dean of the college my daughter was going to.depression doesn't discriminate. It is about time people realize that. Plus getting away from all stress I had a ball. I learned how to basket weave and make leather belts.

I know I always write to much, but I am older and I have been through all these things so if I can help one person I feel better about myself.

                                                            lol Billie                     ps I flunked basket weaving. I'ts hard.



#35 Guest_billronm_*

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Posted 28 March 2011 - 11:07 PM

Dear Caroline,

I feel like Dr Phil,

My first panic attacks started 30 years ago. Please don't give in to them. Talk to your dr. I got so bad I couldn't leave my home or be alone my husband worked for the railroad so he traveled a lot.He had to call his mom in Fla to stay with me. Back then all everyone saidd was pull yourself together I couldn't. My pcp sent me to a psychiatrist who put me on an antidepressant right away and set me up with a good therapist. After spending 3 mos with my mother-in -law I knew I had to get my act together. I made myself drive to the store just for a loaf of bread. I was terrified but I did it. Then I would drive to town to see my mom I was so scared I couldn't see straight. I would turn around and head back home then I turned arouned again and went in to my moms. That went on for a while. But I made myself do it. I just kept telling myself they are just feelings and feelings can't hurt you. I always kept a candy bar in my glove box. Just doing anything would help take my mind of it. I even carried smelling salts with me. Sometimes I would lay awake in a panic all night holding the smelling salts.Now we all have cell phones call anybody and talk to them

that takes your mind off of it. My sister and I both get them and when we do we call each other and talk each other through it. We babble about anything,until we calm down. There are a lot of cd's out now to help.My mother gave into a panic attack and she could'nt be left alone for 25 years.up until she died. So if you think you are starting to get them now nip it in the bud. And don't panic if you get another symptom. Check with your doc but just when you think nerves have done all they can do along comes another symptom.You wouldn't believe what they can do to you but they are only feelings and feelings can't hurt you. I won't tell you all the crazy things I had because I don't want to plant a seed. But always check with your pcp to make sure the feeling or symptom isn't physical.

I know I misspelled half this message but when I read yours I felt so bad I know how awful they can be I'm so tired but I had to let you know my experiance

                           LOL Billie



#36 lala

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Posted 29 March 2011 - 01:37 PM

hi, Billie!  YOU are funny...i don't want a ********** flower garden! :-)  tooooo funny------i think we all know that feeling.  YOU are so nice to have such an open heart....and to talk about depression.  my older brother at 46 suffered immense pain from it----people do not understand -----today, OPRAH had Marie Osmond on talking about her son and his depression.  i would recommend watching it to EVERYONE.  also, flunking basket weaving made me laugh out loud!!!!!!!!!!!  you seem to have a wonderful spirit!  thanks for sharing!  ~Lala






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