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My sweet amazing mom now has bone metastases

teenadee
Posts: 86
Joined: Aug 2011

Hello, this is the first time I'm writing on this site to say my story, my mom's story. I may go all over the place but I need to write and hope someone can let me know I'm not going crazy as I feel I am even though it's my mom suffering. My mom was misdiagnosed approximately 5 years ago as having acid reflux when in fact she had stage IV Thyroid Cancer. Her voice was very hoarse and I had contacted her doctor telling him to put the camera to see what's going on but he assured me that he was the specialist and he is sure it's reflux. I would read on the internet that hoarseness comes from either Thyroid or lung cancer. Anyways, to try to make a long story short, we switched doctors, she had her Thyroid removed, did Iodine Therapy and some radiation and we thought that was the end of that since Thyroid cancer apparently is the 'best and easiest' curable cancer. WRONG... my mom went to Europe and came back not being able to walk. She had a bone scan done and her doctor called me at work to tell me that she has bone cancer (bone metastases) to the hip. He called me as he felt I would handle the news better than my mom/parents. WRONG AGAIN... I almost fainted and I did hyperventilate. My mom and my dad are the world to me. They have sacrificed a lot for me that I can't really explain as it would take days. I have 3 amazing little boys and I've had my share of health problems and they have always been there for me and my family & sister. My mom was put on a chemo pill called Sutent that almost killed her 3 times not kidding. She had brain swelling the last time and she was taken off of Sutent and I changed oncologists as he did not want to listen to me when I told him she is too weak for this dosage. She did radiation but that didn't help. She did a hip replacement in May and since then she is not better. She tries to eat and cannot. She has a cough that never leaves and I know she has a lesion on her lung. She was 150 pounds before all this cancer and now she's frail and 100 pounds. At night when I put my kids to sleep I cry, I try to be strong but I can't stand to see her like this. I love her so very much and as supportive as my husband and friens are they tell me I must accept as it's part of life. Like birth there is death BUT I cannot accept death and I am scared if she goes when she goes, I will never recover. I don't want to make this about me but I wanted to know if anyone out there has the same feelings or am I just selfish. I give my mom her Fragmin injections every morning and it breaks my heart seeing her so skinny and cannot eat because she coughs and chokes. Now I booked an appointment with her oncologist on MOnday to see what he can do. She has bad shoulder pain on her left side and I wonder if the cancer has spread there as well. Thank you for any one that will answer and can relate. Like you all, how I wish I could find a cure to help my mom and everyone with cancer. I hate cancer.

nasher
Posts: 507
Joined: Apr 2010

if you need a shoulder to cry on we are here for you and your mom
if you need something explained we are here for you and your mom
if you need to vent... then vent
if you just need to log things down please do.

I was just glancing at these tonight I normally do research on each topic before answering but you post needed a comment tonight.

I normally tell people they need to be there own advocate but in this case you may need to be your mom's advocate.

ask us as many questions as you come up with don't worry if you repeat a question or a topic that has been covered 100 times... ASK..VENT...Complain...whatever you need. that way we can help you in whatever way we can.

in my family I have had a few people die of various cancers (one caused by smoking) my wife's dad died of multiple cancers as a result of agent orange.

at some time you may need to accept death ... but not until you need to. my wife spend the last 8 months of her dad's life by his side all night long (they had a day nurse) it took her a good year+ to get over it and get on with life... she still has issues with it... especially when i got diagnosed with thyroid cancer.

probably 70% of the thyroid cancer patients are in and out and the only issues you ever hear from them is adjusting meds... the other 30% either have recurrence or other medical issues piling on I have many medical issues... and I am sure you will hear from others who have many medical issues...

I put a strong face to the world... but here i can vent.... i cry some nights... my wife knows and understands... but to the rest of the world I WILL BE STRONG.

you may need to see a mental health professional yourself to help deal with the stress.

"I changed oncologists as he did not want to listen to me when I told him she is too weak for this dosage"

OK I am assuming that you have some control on her medical if not you should get a power of attorney for her medical issues then you can speak for her and be strong against the doctors who want to give her something she can not handle.

make it clear to the doctor that YOU are in charge of her medical and you will tell them if a med is to strong or to weak or if they need to change meds for her.

ask questions here we can help to get you up to speed on the areas you need help in.

I have spent about 2-3 hours a day doing medical research since Jan 2010. I have fought with my doctors... I have explained what wrong with some meds and the path I wanted to follow on other meds... I have demanded and gotten special lab tests done.

Yes I listen to the doctors but I make sure that what they are talking about is in MY best interest. I am not always right. I should have been put on anti-depressants months before I did... I just didn't want another med with more side effects.

I look up each med that I am on... if I hear of a med someone else is on for something similar I look it up and determine if I want to present a case to get on that med or how to ask about it and be knowledgeable.

you say she can not eat. How is she getting nutrition.

my wife spent 21 days in the ICU in 2008... I honestly didn't know if I would be able to survive without her.

Please ask more questions and tell more story we are here

Craig

teenadee
Posts: 86
Joined: Aug 2011

I wish you all the best in your health and pray for everyone battling cancer I sincerely do. Every morning I go give my mom Fragmin injections for blood clotting and I look at her thoroughly to make sure she is ok for today. My mom was an outgoing women, walking every where, everyone just loves her as she has a heart of solid gold. Today I made her favorite mash potatoes and just called her and she has eaten that. She takes Boost as my dad buys her weekly. I am like you, I am on the internet as much as I can be trying to find treatments and whatever I can find out to bring to her doctors. Her doctors are somewhat impressed when I go and challenge their ideas etc.. There's nothing impressing, I just want my mom to live like everyone wants their loved ones. I am so sorry about your wife's dad and honestly, I know myself very well and I won't be able to handle her death. She is complaining of back mid back pain, she has lost weight and she had tumor on her lung which I know has grown and is affecting her badly. From her Thyroid it metastisized to her hip bone and lungs. On Monday my dad will take her to Oncologist. I have 3 beautiful children that won't have school and I will need to be home with my family as my husband has to work. I tried seeing a therapist but she tells me what I already know and is not much help. She told me stop ready the internet but it is the internet that saved my mom a couple of years ago when I found her another specialist who told us it's cancer. My dad a great man doesn't know if he's coming or going he does everything for my mom possibly and still manages to come see my children. We encourage her to eat as much as we can, we stay near her until she finishes, we buy her favorite things and she nibbles. It is heart breaking that she is so tiny now. I don't know how to get power of attorney for her medical decisions - I'm assuming I need a lawyer? I will see what my dad thinks about this - she is so frightened on going back to any form of treatment but I know she will need to do Chemo. Her last treatment was a chemo pill called Sutent - it was brutal, she was in and out of the hosptial emergency for all the side effects. I don't know what will happen next week but I pray for her and I ask God to please keep her with us, I ask him not to take her as his angel because we just adore her so very much. Thank you with all my heart for the kind words you wrote to me and I wish you the best. I will keep in touch with this site. I found it yesterday and was nice to get things out and written.

nasher
Posts: 507
Joined: Apr 2010

Health Care Power of Attorney
A Health Care Power of Attorney is a document that allows you to designate a person (an "Agent") who will have the authority to make health care decisions on your behalf if you are unconscious, mentally incompetent, or otherwise unable to make such decisions. In many states you can also express your wishes regarding whether you wish to receive "life-sustaining procedures" if you become permanently comatose or terminally ill, in the Health Care Power of Attorney document. This will help your agent to know your wishes as he or she makes decisions for you. Even if you do include this in the document, you should still discuss the Health Care Power of Attorney with the Agent, expressing your wishes, values and preferences regarding health care.

A Health Care Power of Attorney is different from a Living Will because it allows you to appoint someone to make health care decisions for you. A Living Will only allows you to express your wishes concerning life-sustaining procedures.

Both Living Wills and Health Care Powers of Attorney are considered "Advance Health Care Directives" because you're giving instructions on what you'd want to happen in the event that you become unable to make health care decisions in the future. Some states also have a specific "Advance Health Care Directive" document that combines elements of a Health Care Power of Attorney and a Living Will. (For a more in-depth look at Advance Health Care Directives, Health Care Powers of Attorney and Living Wills, click here.)

Even if you have executed a Health Care Power of Attorney, you still have the right to give medical directions to physicians and other health care providers as long as you are able to do so. This document only becomes effective when you do not have the capacity to give, withdraw or withhold informed consent regarding your health care.

--- this one may work but looking for others ---

http://www.proforcerealestate.com/flyers/power_attorney.pdf

--- here is another ---

http://www.legalformsbank.biz/sampledocs/medical-power-of-attorney-form.pdf

---

there are specific ones for some states...

you should be able to ask the nurse or receptionist at your hospital about medical powers of attorney I am sure they have someone who you can talk to about them

teenadee
Posts: 86
Joined: Aug 2011

Thank you again. I will inform myself as we live in Canada. Can I ask you a question and I hope I don't sound too crazy, do you think there's life after death? In my religion we are to believe there is and I wish I could find some comfort of thinking there is - I haven't really read on this as I am constantly reading up on cancer. Just crosses my mind in the hopes this is not it. Have a good night and even though I don't take my own advice, enjoy every moment with your family and friends, try not to think of the what if's (it's easier for me to say this to someone than to make it my own motto).

sunnyaz
Posts: 582
Joined: Oct 2010

Hi teenadee,

Welcome to the boards. We are glad to have you here. There is life after death for those that believe. I am a Christian and I firmly believe that Heaven is a beautiful and forever place that surrounds us with love like we will never experience on earth. This is my faith.

By fact, and scientific proof, I can tell you that our bodies empower energy. Energy can not be created nor can it be destroyed. This is the Law of Thermodynamics. You can look it up on Wikipedia and many other sources. So, if science merges with faith we have to conclude that our energy must go somewhere when our bodies become void of life.

There is something I haven't shared with anyone on this board yet, but now it's time as you are the first to bring it up. When I had my second surgery, the surgeon accidentally cut my outer jugular vein, but didn't tell me until two weeks later at my follow up appointment when I asked him for my report and why I had so much blood loss. I also had an extra incision that made no sense and my husband and I wanted answers. The cut was made to insert the drain tube after a right neck dissection to remove 34 lymph nodes. He didn't get to do my third surgery; by the way. My Endocrinologist fired him from my case because he not only cut my jugular but missed the targeted nodes from the biopsy.

When I woke from the surgery and was wheeled into my room, my husband and friend noticed the extreme amounts of what we thought was dried blood or iodine on the back of my head and neck all stuck in my hair. The entire back of my head was encrusted with dried blood. My friend and husband diligently tried to help me clean up the mess with warm wash cloth's because it was really bothering me. I was too weak to help them.

I had never had a dream while under anesthesia until that surgery and I thought it was very strange. Two weeks later when I found out about the accidental cut, it became apparent that I had been to another place and that I was hanging on to life during that time I was gushing blood onto the OR floor. After the surgery I kept rambling on and on to my husband and friend about the beautiful dream I had and that I wanted more of that anesthesia. I wanted to go back! I dreamed that I was in a green field of rolling hills with purple and yellow flowers growing everywhere. But when I stepped on them I did not crush them. My father who had passed away five years prior was there; smiling at me. Then I saw my grandmother who had passed away 15 years prior. Then, one by one, everyone I loved that had died was there emerging from a beautiful and warm light like the sun but it was not blinding like the sun. I could look directly at the light. I was in the most warm and loving place I had ever experienced. No fear, no pain or worry, only love and joy. Then, it all faded away and I woke up in in recovery with horrific pain and calling out for more drugs to kill it. All I could say in recovery was a faint "pain" as I tried to lift my arm to get someone's attention. Then I remember a large man coming to my bedside and injecting something into my IV. He smiled and told me that I made it through the surgery just fine. I slowly began to wake up remembering everything about the "dream."

I had heard of these stories before from other people but I didn't know what to think of them. There is even a TV show on the upper cable channels I have seen that depicts others that have experience something similar.

So, I live my life enjoying my family and friends knowing that my real life begins after death and that someday we will all live together in peace, love and harmony. I don't fear death anymore, I only feel sorrow for those that I leave behind until we meet again. I try to live each day as if it is my last, never saying a harsh word as I don't want anger to be the last thought someone would have of me.

I will keep you, your mom and your family in my prayers. I pray that God will comfort and keep you in your times of need. When you feel afraid just ask Him to hold you in His arms.

Blessings,
Julie-SunnyAZ

teenadee
Posts: 86
Joined: Aug 2011

Thank you for sharing your story. I am typing and crying at the same time and you have comforted me deeply. Before I had my children, I was a super tough girl/women, I didn't let too much bother me and I lived my life day by day. After I had my kids and now I am of course much older, I have never been so scared of life and all the horrible things that are happening in this world. Today I went to see my mom and spent quality time with her, a while back I asked her forgiveness for those times I would yell and just be crazy. Before my mom got sick, I would have Friday's off and we would go every where together. I remember one Friday in the car with her next to me, thinking, man I wish I could have just one Friday to myself to do whatever I want. Be careful what you wish for as they say because the week after is when her doctor called me and told me about her Bone mets. I try to be kind to everyone just like Ellen De generes says at the end of her shows but I have very much anger with family and people who have hurt my mom, my parents deeply. They have taken advantage of her sincerity and it sickens me so much. Then I read things like you wrote and I say I could be better and I should not fear death. I talk to god every single night and he does listen to me I think or my mom would have passed away months ago. I breath relief when I read posts as yourself and others that can help me because I don't want to nag my husband and friends all that much about my mom's condition. Thank you Julie - SunnyAZ. May the sun always shine on you and may you always be well. I am sorry for what you went through and I am glad you had this amazing experience to tell people like me who are so terrified of loosing their parent or anyone they truly love that something is more beautiful and peaceful out there. Good bless you

factfinder
Posts: 6
Joined: Aug 2011

Teenadee just logged on and was touched by your devotion to your mother. What a great daughter you are to be such a support during these trying times. I have also been diagnosed with thyroid papillary cancer. I have gone through two neck dissections (the last being only on June 6 of this year with 48 lymph nodes being removed obviously some were cancerous). On this Tuesday I went through a PET scan and I am now being referred to a thyroid cancer specialist that I will be seeing tomorrow for the results. I feel that things are not going to go very well because I was told by another oncologist that my amount of lymph nodes was not of the norm. Radiation treatment has never stopped the growths in my neck. I have been fighting this since 2007.

I never thought that thyroid cancer could spread as you have stated with your mother's prognosis. I was told by my surgeon that thyroid papillary cancer was the "good" cancer and that it never effects other parts of the body. Well the joke is on me I guess.

I just wanted you to know that I am so sorry for all the pain and suffering your mother has endured and pray that she finds some sort of relief. I also admire you for being such a wonderful daughter as I am sure your mother realizes every day.

Other than your father do you have brothers or sisters who might take some of the pressure off of you? There is nothing more important than family.

Well I am sorry to go on for so long, but just to let you and your mother know that we are thinking about all of you.

Again, best of luck to you and most importantly your mom.

teenadee
Posts: 86
Joined: Aug 2011

Thank you for taking the time to write. I am sorry about your condition as well and maybe my mom's case is a rare one. My mom's cancer was caught late in the game because of a stubborn doctor that would not take the 2 min time to put a camera down her throat to see the tumors or to notice something was wrong. My mom's voice changed the year I had my first son in 2002 and I would tell her to go to doctor but she would say it's probably a cold and things like that. Being a new mom and one that had longed for a baby for many years (now I have 3 that I love more than my life) I would not stress on her not going because I would focus more on my own issues. Finally my mom ended up going and was referred to the worst doctor in history who put her on Nexium pills for acid reflux for 2 years. 2 years!! If she had been diagnosed properly, the cancer could have been removed sooner from the Thyroid and then it would be the 'good cancer to get'. But this is not her story and I'm sorry I'm going on and on but it helps me cope. I am so grateful to my mom for being there for me 150%. I had stomach surgery after my twins were born and I could not take care of my kids. My husband did what he could and it was my mom with the help of my dad who took care of them when I wasn't well. I don't feel like I owe it to her because I so want to do whatever I can to help her and I do as much as I can for her every day. I love her deeply and when I think that she will pass my insides are just destroyed and don't know how I will cope. Therapy is useless but that's another topic :) I have a sister who is divorced and well she blames her problems on the world and she does help somewhat but she has an older son a teenager and anything that goes wrong with him like when he doesn't listen, she calls my parents. I get so mad because they have a ton of problems coping with cancer they have to hear her complaining and yelling. She is a good person deep down but she always makes me feel guilty for having a good family and always tells me shes alone and doing everything herself (not really true as my dad helps her greatly). I have taken up enough of your time and thank you for listently. I wish you the best of luck with your health and fight with all you've got. Also when you feel things aren't right - speak up and be heard no matter what.

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