Never in my wildest dreams did I ever think that I would be diagnosed with a second type of cancer. Having bravely fought the first battle with less than acceptable odds, I survived minus a leg, a healthy head of hair and and terribly depleted ego. But I survived realizing the leg and hair were the trade-offs and my ego would recover.
Twenty five years later and who knows how many cigarettes I smoked between the ages of 15 and 45, lung cancer grabbed a hold of my lung. Took 11 months to diagnose what should be have been found the first time I told my doctor something was wrong. Since smokers are considered losers,not enough money has been spent on finding ways to diagnose lung cancer. Once it is big enough to show up on a chest X-ray it's usually too late. Or in my case it was big enough and should have shown up on an X-ray but it didn't. Due to my self advocacy I was finally able to get an CT Scan done. Low and behold there it was. So it took 9 months longer to get diagnosed. That nine months may be the reason I'm now diagnosed as terminal. Even my doctors believed I would survive after removal of the lower lobe of my right lung, but that 9 extra months only gave the tumor that much more time to ravage my body making recovery impossible. Starting at a Stage 1 A (least deadly stage) dropping instantly to Stage IV (termanl stage) when a new spot was diagnosed on a bone changing the diagnosis to a new and deadlier name, Lung Cancer which has metastasized to the bone.
I can get through this I keep telling myself. There is a l% survival rate after 5 years. Hell I can be that 1% person. After all, I already have lots of experience with cancer, testing, oncologists, chemotherapy, mental therapy, group support and grieving stages. I certainly have all the tools. But they don't seem to be working.
Opting out of chemo as it was only going to add a couple of months time and due to almost dying from side effects after my surgery I opted for pallative care rather than aggressive chemotherapy. Even through the chemo of today is nothing as bad as it was 25 years ago when I went through it, I always said I would never do chemo again unless I had great odds for a cure.
Why would I want to put myself through months of chemo to add on a couple of months of life. I'd rather have good quality time while I'm here and enjoy my life. I do question periodically if I have made the right decision or have asked myself if I gave into the cancer too easily, particularly when I see people ravaged by long term chemo continually putting themselves through it as there lives slip more and more out of their control and into the control of the chemo. I don't know if I'm helping my l% odds but I sure feel better than my chemo friends.
Does the fear of dying grab hold of us so tightly that we truly can not decide what's the best thing to do. I feel better and look better than my chemo friends but will I be sorry later when I'm on my last leg and they still have several months of life ahead of them? Or will it be life or existence.
Over the past 8 months, I have become my own worse client. A counselor by profession who has now become someone emotionally out of control who can't do for herself all the things she tells her clients to do to help themselfs during bad times. I am being forced to look at why I'm so special that having many of the same emotional needs as my clients is so wrong and then add in the out of control state of my feelings...I'm a mess and hate feeling so out of control in all areas of my life.
I loved my old life of being in control of my life and everyone elses; independent, single and loving life on my own. Rarely asking for help and always being unable to work out a solution to all my problems, living from goal to goal helped me build and live a very successful life, but tools that helped me build my life are making it nearly impossible for me to live out my remaining days with any kind of peace.
I'm one of the lucky ones who has wonderful family and friends all of whom have risen to the challenge of helping me get through this latest ordeal. But I don't want to ask help from them for fear I will have burned them out before then end when I will really need them. I spend my days holding in gut renching feelings just so I don't have to tell my family and friends how I'm really doing. I don't want them to feel my pain or to cause them any pain, yet under the circumstances I don't I know that is not being realistic. I've been told I'm taking away their ability to give me their support and emotional gifts and that I'm not responsible for their feeling, they are. When I have given my whole life both personally and professionally to helping others it is not easy to switch overnight to being a full time taker.
Without Hospice I would probably be looking for ways to end things sooner, but that's for another time.
Dying is Hard Work
posted 2 months ago, updated about 8 hours later
Comments
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- 1. 2 months ago IrishRose2007 wrote:
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Very powerful words...you are an incredibly brave person...thank you for sharing your feelings here...you have helped me deal with a family member's diagnosis, so please know that your efforts to put these emotions into words benefited another...and thank you so very much. Peace be with you.
- 2. 2 months ago HoppyLady54 wrote:
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My husband had 2 different types of bladder cancer. First in 1994, second in 2000, then lung tumor found in 2007 which didn't show on xray. Lung scan proved useful in diagnosis. Doctors are sometimes slow in getting all the information! Tried chemo which was sucessful in shrinking at first, but stopped working. He chose no furthur treatment for three months of "living". We all supported the decision.
When we think we know all the answers the questions change. Only experience brings answers for the person, but each person is different which makes it impossible to know for certain the outcome.
You are a competent, intelligent , brave and wonderful lady. Friends would like to help you and even though they might not understand your depth of suffering, support given you would be beneficial to them for their own sake. You undestand the satisfaction of helping others so, please consider your family and friends when deciding whether to accept help from them. Together, you all will be uplifted.
May God be with you, Dorelle
- 3. 2 months ago caradocs wrote:
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You are a very brave person. It is time to reach out to your friends now.
My husband had prostate cancer that metastasized to his bones. My family and his(our) friends were an incredible source of support and strength. Hospice was also amazing. I could not have managed without Hospice and Richard's friends and brother.
Please do not deny your friends the opportunity to be there for you.
- 4. 2 months ago grammalpn wrote:
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Having been through Cancer (and the family DOES go through such a disease, too) with my sister and a sister-in-law, relating to your situation is easy--you have chosen YOUR WAY, and that has to be accepted by everyone in your life; however, I also agree that you should allow them to help when possible, mainly because that will help them later, knowing that they had done the best they could to help someone they love. Giving up one's independence is difficult, I know, but allowing others the opportunity to "be there" is an act of generosity that will be remembered for a long time.
Hospice helped us through my sister's death (and recently, the death of my Dad); this group is fantastic! I am glad that you have chosen to use them and their wonderful people. The care and love that they showed to my sister and to us will be remembered forever.
You are a brave human being, and I admire you for the strength it takes to follow your heart. Just remember that the hearts of those who love you are hurting, and being there for you does ease their pain.
God bless you!
- 5. 2 months ago ladyt16 wrote:
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Hi I have lung cancer too stage iv no cure and it took them a while to find mine also.In 2006 I was diagnoised went into remission March 07 now
it's back it's not in my lungs anymore it done moved to my adrenal gland.
We are going to fight this thing one more time you can read my blogs to
see just what I'm going through. I will keep you in my prayers
- 6. 2 months ago lizzy55 wrote:
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I've often thought that it's not the dying that most of us are afraid of; it's the process of getting there. If we're lucky, it's the slow deterioration of our faculties-physical and mental. If we're not, it's the pain you now face. If I could lessen your pain, I would. Think of how much those who actually know and love you would want to do the same. Please let them do this one thing for you. It's time for the care-giver to become the recipient of all of the loving help you deserve. I will pray for you every day. May you become one of that lucky 1%. This is my fervent hope for you. Liz
- 7. 2 months ago sueberry66 wrote:
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My mother made a similar choice and left the hospital to "go fishing", one of her favorite pastimes. The extra weeks would have been spent in a hospital and she felt it better to enjoy her life than just lengthen it. You are an inspiration. I hope you find peace.
- 8. 2 months ago Risibility wrote:
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Calm seas and gentle winds!
Blessed be, Merry part and merry meet again,
Lynn
- 9. 2 months ago celtcwoman wrote:
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I am so sad that you must endure this cancer. I have been a nurse for 40 years and currently hook patients up to chemo in their homes. I can honestly say that you have made the right decision to have a better quality of life. I would have made the same choice. I believe today that certain diseases are big business and chemo is not always the answer. As professionals in the healing fields, we never want to burden others with our feelings. It is time for you to cash in the green stamps and let your family know how you are from your heart. That in itself will give you great peace.
You are in my prayers.
- 10. 2 months ago WonDerArt68 wrote:
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My heart goes out to you - I, too am a survivor - of two different cancers - first - lymphoma, which was stage 4 when finally diagnosed - 4 different chemo treatments and 2 years later I was a shadow of my former self, but the cancer was in remission (against all odds). I struggled back to full health, only to have bladder cancer 4 years later. After surgery, it came back a year later - more surgery and mild chemo - it's been 5 years since that. I am grateful for each day and know without God's intervention I would not be here. I hope you can allow your friends and family the opportunity to give you the help and comfort you need. And that you can accept the saving grace of our Lord and Saviour, Jesus Christ - he is the best Comforter and Healer! Knowing your destination after your earthly life is over can bring real strength and power. God bless you.
- 11. 2 months ago Bill5662014 wrote:
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Dorelle
My father fought cancer and gave up on chemo and radiation. He died from a stroke instead. Not too mcuh suffering. He always said he suffered more mentally than physically. I know it is not much but, I will pray for you. It is a road that every one of us will travel. A man once said that death smiles at us all. All we can do is smile back. God's blessings to you.
- 12. 2 months ago whiteprincess wrote:
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girlfriend you dont sat if your in ant groups i recommened cancer group
thry wil reach out to you wp
- 13. 2 months ago womyn430 wrote:
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Please do NOT term yourself a 'taker'. Perhaps we are all meant to 'take turns.?' For over 50 years, my mother 'gave' to me, and then I was able to 'give back' by moving her in with me on home hospice. Since that time, I seem to be obessessed with my own death, which is hopefully premature; but there's the rub: none of us truly know. All are terminal. Words come easily, but the true feeling ofone's own death is so highly personal. I just finished Minot's book entitled EVENING, and thought it was so incredibly expressed. Apparently it is a movie also with Meryl Streep?
I am relatively new to eons and do not know my way around here. Do you have an actual blog?
Seize the day!! Deb
- 14. 2 months ago ayla1711 wrote:
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You are indeed a very brave humanbeing. My brother is, was very very brave. Never allowing me the full picture of his condition. He had cancer and went through all of the hard treatments including chemo and radiation..still telling me only afterward. He did not want me to see him, it was not agood time. he didn't want to worry me. We were intouch by phone and spoke often about when he felt better I could visit or he would visit.
He was told he had something on the other side of his throat that had to be removed. He didn't even want his wife there. I insisted that she go the 200 miles away to the Vet hospital and she did. He was told he had a blood clot and a 75% block in his heart. The throat thing was not cancer.
He opted to leave the hospital rather than stay the week (his wife would not be able to stay because they had adopted two little girls)he said "I can take the meds to get rid of the clot and then go for surgery.
He went fishing a week later on this past Sat. He got in his truck to leave and slowly hit a tree and died of a massive heart attach.
I loved my brother so very much and the only comfort I gave was on the phone with listening only. Would that I could have been with him and shared his fears or cares. He sheltered all of his loved ones until the end.
I am left knowing Jim is in need of nothing now, and what is left is my pain for not being there for him.
Please love yourself enough to allow the love from your caring friends and family now, while they can love you. Please do not waite until you have no need of anything from your earthly friends. I know my beautiful brother Jim is in a glorious place and I can not go.
Your letter is so very touching and real I am feeling how much you are loved and need to reach out. You have much to share what ever time you have left. I treasure the long phone conversations I had with my beloved brother. How I wish I could have shared and held his hand.
God Bless you brave lady flamingo, you are indeed aprecious human spirit as my wise all to brave and caring brother.
I shall keep you in my prayors.
Thank you for sharing this with me. It helps me to understand my brothers wishes.
nameste
- 15. 2 months ago goodsitstay wrote:
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The journey is long and I hope you reach out to your friends and family--people want to be there for you-really, really. Bet they will beg to go the whole distance, you won't burn them out. Know you are in many prayers as we read this. Maybe one person will think about their smoking and this is not a blame thing in anyway. It appears the medical community has little compassion for this disease. Not so in the outside world. You are a strong woman.
- 16. 2 months ago kpasa111 wrote:
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I think I will have to disagree with some of the advice you have been getting about "allowing your friends and family to help, etc". Hey, you do what YOU want to do.
- 17. 2 months ago hsweetface wrote:
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You have are going through a lot right now and decisions are difficult to make regarding how to treat this terrible disease, but you can do it!
I have had cancer more than a couple times, the worst types were a brain tumor diagnosed in 2000 and esophageal cancer in 1998 (leiyomyosarcoma). They gave me radiation and cut both tumors out and both were long drawn out processes but I survived.
The leiyomyo was a rare cancer which they said attacks 1,000 in about 10 million people and chemo did not work on it. The only thing that seemed to help was cutting it out according to my doctor. Anyway, it took over 4 years to find out why I was so sick with the leiyomyo even though signs were there.
I was told I was allergic to Dallas air and then that I was neurotic before the tumor grew so large I couldn't breathe or eat....and they had wasted 1,000's of dollars trying to find it.
The brain tumor was found accidentally while I was having one of my 3month CT scans done.....my oncologist found mention of a large lump in my brain in a report (evidently growing there several years). All I knew was I was having blackouts, couldn't put words together properly or make competent decisions. I also could not remember names or information about people I had known for years....that sucked.
The reason I am telling you this is, do what you need to do to take care of you, both physically and mentally. We don't know what is going to happen and you are correct that you could very well beat this horrible disease; a lot of my friends have and I have several times.
It has taken the doctors several years to diagnose and treat every cancer I have had except the melanomas’ (which they can see - duh), but you know what, I keep after them no matter how crazy or neurotic they try to make me feel and everyone should. Our health is really our business not theirs....don't let up; keep searching for anything that will help you win this fight.
STAY TUFF!!!
- 18. 2 months ago GypsySmiles wrote:
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You are so brave and will need the help of friends and family. Let them help even if you don't want to at times. It not only helps you but, it helps them for the coming years to know they helped all they could with what they had to help with. I know this from going through it myself. No not in the same seat you are in but, beside a few in my family. My Da passed a year ago with two kinds of cancer, and this year my oldest son has had Melonoma cancer along with my X husbands father who also has two kinds of cancer. So I know how it must feel for your loved ones that want to help when you need it. This world has many woes but, we must all try to keep each other strong while we are here, and knowing you are so strong, helps others go on and be strong too. Thank you for opening up your life to us.