Hi everyone... it's been quite a while since I've been in here but I am at a loss right now. Not only do I have CML (dx Dec. 2006) but now I was informed by my father that my mother has liver cancer... hepatocelluar carcinoma. The news was shocking and surreal to say the least. The more I've researched this illness for myself I just couldn't even finish reading about it. Just took me a while to accpet it enough to even want to talk about it...
I live in VA and my parents are still living in SD so as soon as I found out I took a flight home - love the people at Delta, they got me home fast!!!- - anyway, I've been home now since the 22nd of Oct. We've made a lot of headway in seeing who we need to since then, only to find out that with all of best efforts, there's nothing that can be done except try to make her comfortable. The illness is too far advanced and she will not live to see another Thankgiving or Christmas. We are trying to make the most out of what time we have left with her.
We had made a trip to the Mayo Clinic and they were really good to us (the facilities there are incredible as well as all the people we dealt with) and the hepatologists/gastrointerologists that we saw basically told us what we feared but we needed to hear it from them. My mother just turned 65 this year and it's just too soon for her not to be around to be with us and her grandchildren. She has always been very healthy and this just came too suddenly, as most illnesses seem to do. I have remained here at home helping my parents now, and ironically since having dealt with my own illness it has given me the experience in dealing with appts. and doctors and in knowing what to ask and what to expect as we continue on with this journey. There is a drug therapy that we have her on now called Nexavar, and it's been out for about 3-4 years. It is suppose to help slow and possibly stop the tumors from continuing to grow. Even with this drug the outcomes in the past depending on numerous factors of course...have prolonged life in a matter of months. My mother is so weak from all of this and within 2 weeks of her being dx with this she looks as if she's aged 15 years. It's hard to accept, as it would be for most people to lose someone so close to them... I just hope I will be able to continue to be strong for her and my father.
I have plans to go back home to VA to spend Christmas with my family but then will return afterwards to SD for however long I need to. I'm struggling with having been gone so long from my family but I know being here with my mother and father is where I need to be... its where I want to be right now. I've just never been gone for so long. Any other time I'd only be away for a week or a few days more. I just try to keep my mind clear of all of this and not think about everything but it's easier said than done.
So... aside from feeling overwhelmed, sad, angry and frustrated... I think I'm doing fairly well. It's no surprise that I've also looked into what lies ahead for me in my own mortality as I also have chronic liver disease. I have been in treatment for it since my CML was dx. There were complications with it and when I was seeking to have a BMT they quickly told me no based on my liver disease. Apparently the procedure would be too taxing on my liver and would cause it to fail... I've already had 2 instances where my liver was failing so it does make sense but leaves me even more frustrated because it's bascially taken any choices I had away from me. It's as simple as it's stated.. Cancer sucks and I really am having a great deal of animosity about it even more so than I have before. What gives!
Anyway, thanks for taking the time to read and let me vent. I hope you're all doing as well as can be and I know we're all in this together. It's nice to know that however difficult our journeys may be in this fight that we all can relate in some way to how we're feeling. Thanks.....
I'm really sorry about your mother, it is very hard news. She is too young. Everything you are feeling sounds normal in your situation and yet it's not "normal" to be feeling this way. When somebody you love is terminal you almost start grieving for them straight away, well that was my experience anyway. It is a very hard combination to be grieving for somebody while trying to enjoy the remaining time with them and having cause to reivew your own mortality.... all at the same time. My dx period involved something similar. About six months after I was a bit messed up and ended up having a few sessions with a psychologist. If I had to go through it again I would seek help a lot earlier.
My Dad was dx with lung cancer about 6 weeks before I was dx with CML (4 days before Christmas 2010) and he died 5 wks after my dx. We never told him about the CML, so our time with him was a time with CML tucked firmly in the background (some would say where it belongs) but try as I might I could never quite let it go. I will not lie to you about Christmas, it was hard but I got thought it without breaking and without forgetting it was all about my Dad not about me. I did have some help there too, from somebody outside the family. The support I got from that person at that time was incredibility important as it took some of the load off my husband to be (we were married 8 days after my Dad died).
Being able to watch the journey with my Dad took a lot of the mystery out of it for me. It was a gift but a hard one. There were times that it was so hard I was distant and I wish I could have said more or been more open. My Dad picked up on this but he assumed it was my sadness for him and I'm not sure that it wasn't - when I couldn't tell him about my CML a part of our relationship died then and there. Assuming that your Mother knows about your CML maybe there will be a time when she helps you with your struggle. Maybe it will be overt or maybe it will just be the journey.
All the best
Oh, Mark. . .I am so sorry to hear about your mother. She (and your dad) are lucky to have you around to help them out. I agree with you, cancer just really sucks. It is not fair, and why does it always seem to affect the really GOOD people in this world?!
Best of luck as you try to figure out the balance of taking care of yourself and your family, and taking care of your parents.
Hi Mark. I am so very sorry for all you have to deal with and can relate to how you feel. My beloved step-father passed in Feb., and my biological father died when he was 58. Hopefully, the drug your mom is on will help prolong her life. You sound like a wonderful son, not all children are there for their parents. I do believe where there is life there is hope, I do believe in miracles. I think, we just have to keep plugging along and believe that in time things will get better. I'm glad you are able to vent, hopefully that help you. Hang in there, Mark and know that we are all here for you.
Dear Mark, I can feel your pain and frustration. It is healthy to feel. In fact I am glad you are venting, as sometimes I vent and then feel, embarrassed. However everyone on this board is living with cancer of their on and/or family, so we know what it is like to have those feeling. i don’t know if you believe in prayer but I am prayer that whether God decides to heal your mother or take her home to heaven that Jesus will give you peace, comfort and ease your burden. Your are a good son. You would be surprised how many children are not there for their parents or loved in through these difficult times.
Bless you for caring so much. But please remember you can’t help your mother if you don’t take extra good care of your self. You have your own health issue and if your mother knew that you are also dealing with cancer issues, I am sure she would want you to get your rest and not stress. As far as telling your mom about your cancer, well personally I wouldn’t see how that would help her. When my mom had surgery and was very ill, my sister told mom my brother had prostrate cancer, which was actually very treatable. Anyhow mom had major stomach surgery, and she would cry from the depth of her belly that my brother was going thru this, it did not help her one bit.
I am praying for God to carry you and give you rest. What good would it do if you both go down hill, then you can’t help anyone. Praying that God will give your mother the best care ever and help you to not put to much on your plate. Keep Praying, and believing that God hears your prayers. If you are of a christian believe you might want to consult with a minister of your faith, most hospital have clergy. They can be of great help and comfort during these times.
Prayers and hugs xoxo
Thanks everyone for your thoughts and prayers... and also for sharing your own personal experiences with me. To say it's been difficult dealing with everything is an understatement but we're still hanging in there. We had her last doctor's appt. and they have decided to take her off all medications except pain killers. The feeling is that from here on out the additional medications will do more harm than good. It was our last appointment. This took place about a week ago so I've had some time to process this. It's still very surreal... I had pulled the doctor aside after my parents had left the room and I asked him the hard questions that you never want to know and it wasn't good at all. I suppose I had known somehow deep down what the answer was going to be but nothing prepares you for it...especially when it's being validated by a doctor.
My mother is a strong woman, she always has been ever since she came to the US. Oh, she's Korean, born in Mokpo South Korea. She and my father met while he was in the US Army. She came here hardly knowing any english whatsoever and learned most of it from television. I was actually named after her favorite movie later, "Cleopatera & Mark Antony". I always joke around about how I was lucky Sesame Street wasn't her influence as I could have ended up with Elmo or Kermit....
My sister and I are actually a miracle in itself because of how everyone was so against the marriage from the start. Even against all the resounding disapprovals of them being together, they stayed the course. They married while they were still in Korea (at the American Embassy) with no support from either side of their families. He accompanied her back stateside and then had to go back overseas for a time and leave my mother with his familly ( they were awful to her as well-to say the least ) so he could finish his tour. Eventually after my father returned, they were able to get away from his family and start their own life. I'm so amazed at her courage and how she could have left everything she knew behind to have this life with my father in such an unfamiliar place. My parents have been married for 42 years now... I really don't know what my father will do without my mom.
Oh, my parents have always know about my illness since I was dx. We even blood drawn togther at her last appointment. It was sorta "special" in a really weird sort of way because we now had this in common. Does that make any sense??? Anyway, I hadn't have tests done since I've been away from my own oncologist and they really wanted to see what my counts were.
Anyway, it was my mom who came out to live with us for 4 months while I was at my worst with all of what my body was going through. She was there for me till was better able to take care of myself as well as my boys. I have a hard time with my not being able to help her like she helped me to get better. The outcome isn't like it was for me. I can't see her through to getting stronger and it's not fair. I remember waking up at all hours of the night... she'd get up with me and we would go for walks to try and get my strength up. Literally it was like taking baby steps because I was so incredibly weak, but she stood by me and always walked with me. It was January so it was also very cold out too. She hates the cold! lol
So, now the question is do I dare try to go home for Christmas or do I stay? I know for some it may be a very simple decision but I've never been away from my family (away from my boys they're 6 &10) durning the holidays. I also know I take a chance that I won't be with my parents if something did happen. I talk to them every night to say goodnight and tell them I love and miss them. They always ask me if I'll be home or not. I just don't know..... My plan was to fly home and drive right back right after Christmas but even with my being gone a week it worries me. They both want me to go home and be with my family and she has been doing fairly well so far but things can change in an instant. I'm very torn about this and am still not sure...
Well, thanks again for everything... this has helped immensely being able to share all of this...
I am so sorry to hear of your mothers untimely cancer. My heart goes out to you & your family. Being from a very close knit IRISH family, our family all lived in the same neighborhood. My uncle, my mothers brother, passed away Christmas morning from cancer & my dad passed away 4 months later, the day after Easter. Your parents are so very lucky to have you--a very kind loving son to be able to help them thru this. Please know everyone here will be praying for your mother & all the family-----please take care of yourself!!!!!! Keep us posted as we are all here for you. Prayers, grannyd
Thank you grannyd... We lost mom last Tueday morning... I think my father and I are still in a state of "this is just a bad dream" but each day it does seem to be a little easier. Thanks for your kind words and prayers... now we are just trying to get things in order and take care of the things that are hard to do. Nothing could ever prepare us for this and we know that time will eventually heal but for right now its just very difficult.
When she passed away she was not alone and we know that she knew this too. I feel so fortunate to have had the time with my mom during this whole ordeal and although it was killing me inside to see her taken a piece at a time by this disease I was still so happy that I was able to have the time I had with her. I just miss her so much...
Mark, I am so sorry for your loss. As a teacher of 25 years, I have seen all manner of parents, and it sounds like just one day with your mother was worth a lifetime of days with many of the parents that I have encountered. You are so lucky to have been been born to your wonderful mother and father. I wish all the best for you, and especially to your father, as you adjust to the hole in your lives. Let the happy memories that you have honor her life.
Dear Mark: So sorry to hear about your Mom, and they do say that time heals all wounds. It will take time, but it will get easier for you and your father. Find comfort in the fact that you were able to be with her before she passed on, and just the fact that she is no more pain should bring you and your father relief.
I will pray for you both to find peace in all of this.
I am so sad to read about you and your family's struggles. I caught on to this thread a little late. I am so sorry about your mom.
There is something to being realistic, but I pray for a miracle for you. Life is beautiful, but can also be so cruel. My heart aches for you. Cancer does indeed suck. All chronic and devistating disease does. I wish for you to beat all the odds. You are a strong person. I wish you peace and continued strength.
All the best,
Hello everyone... it's been a month since my mother's service and I have come back home the month of January to spend more time with my father. I did go home for a week to spend Christmas but left on New Years day to come back. It's still very surreal to think my mother isn't here. My father and I are still having a pretty hard time of it...but we do try to stay busy and take comfort in just each other's company. I can't believe it's already about time for me to head back home again. The month is almost over and I don't know where the time went. I am very worried about leaving my dad alone and even though he's been back to work I can still see him struggling so much. I'd stay longer if I could but I'm also feeling pressure from family to get back already. I don't agree with their feelings or thoughts about everything... I keep hearing "it's time to move on" and "dad will be fine, he's moving on,,, he's back working"... that doen'st mean anything to me. I see how he is and I feel like I'm being forced to just ignore how i feel in losing my mother. To say it makes me angry is an understatement... Needless to say I have discovered how to see people for who they really are in all of this. My eyes are very much open now and I can't believe what I'm seeing. This whole experience has changed me in ways I can't even describe. It's also made me wonder even more about my own health. My mother died of liver cancer...and I have both Chronic Hep B and CML. It was approx. 2 months from the time we found out to when we lost her... it all happened so fast... I know it's different, but I can't help but still wonder about it.
Anyway... Thank you all again for all your thoughts and kind words of support and encouragement through this whole ordeal... I really appreciate it.
Thank you for posting, I have been wondering how you are doing. I cannot say I know how you feel, because I do not, but I can say I know the loss of loosing my mother, she also died of cancer. This may sound odd to some, but after taking grief classes when my mother died (my father in law was killed in a motorcycle accident just a few weeks after my mother died), I have a very different perspective on grief. I was one of those people who said it was time to move on, time to get back to life, time to regain routine, I say this no longer. I learned no one should tell you it is time to be finished with grieving, no one should tell you to 'get over it', and no one should be saying it's time to move on. Everyone experiences grief in a different manner, I met people who are still grieving over the loss of a loved one twenty some years later. They are functioning in society, have went back to their lives, but they still grieve. When the grief becomes dangerous is when it takes over a person's life, daily routines are interrupted, functioning at home and work stops, this is when it is time to seek professional help to overcome the first stage of grief. There is no time limit for grief, there is no rule that states you have to be better by this day, there is no person who has the right to tell you your grieving is complete. Your dad is moving forward after your mom's passing, but he is also struggling and you can see it, his life partner is gone and he is lost. We do change when a death occurs, we are never the same, our routines, lives, and existance are rearranged and yours has turned upside down at the loss of your mother. You feel closer to her because you are closer to the things she held dear, including your father. You also feel as if your father is abandoned when you leave, you go back home to your family and your dad is alone. (I am basing the feelings on personal experience, so if I am incorrect, I do not mean any disrespect) To continue the process of grieving, you are going to have to do what it takes to make you feel comfortable, if you do not, you will be miserable where ever you are. My only advice is not to judge too harshly the thoughts of others, they do not understand how you are feeling, even if they have lost a parent in the past. Please take a deep breath, and consider your options, is it possible for you to go back and forth for a while between your home and your parent's home and balance your family, work, and personal relationship, is this an option until both your dad and you are feeling more comfortable? I was told countless times my mother would not have wanted me to be miserable, well my answer to that was a bit crass, 'She isn't here to tell me that." The initial gut punch you receive every time you think of the fact you lost your mother will fade, I promise you it will, but the loss stays with you forever, that will not change. Noting your last comment before I finish this post, the death of another does bring forward all the feelings we have, especially as a cancer patient ourselves. Recently I attended the funeral of a woman I never met, she lived in California, but her sister is a dear and we are good friends. This woman died of lung cancer, and her battle was long and sad, I had difficulty functioning after the funeral, for days I kept thinking will this be me, will this be my family, looking through photos, trying to figure out which ones to add to the pile to show at my funeral, will they be sitting in front of the church, looking at remembrances of me........ I darn near drove myself crazy, again I took a different action than perhaps many would. I started to get photos together, I wrote down music I wanted played at my funeral, I made sure my requests are in writing so there is no confusion concerning how and what I want done, I have even started to give my niece many things of my mothers, she is the only girl and she may as well enjoy them now, with the stories behind them, instead of being handed a bunch of stuff from the past 100 years of relatives and wondering what it was and why someone kept it. All of these things made me feel better, even if some would think they were morbid. You have been in my thoughts since reading your original post, I wish you peace, take care Mark.
Wow... thanks Pam, that really means a lot. And yes.. you hit it on the nose in how I'm feeling about leaving my dad alone. I wish it were that easy to come back from time to time but as I live in VA and he's in SD... it's not easy. Initially I had flown out here late Oct. to help take care of mom and just be with them both. After my mother passed I did go home for Christmas (in VA) and then drove back to SD. It was a hard decision to drive as I haven't been able to drive long distances due to how tired I become but I was very determined to make the trip. I took my time and stopped (a lot) when I became tired. Anyway.. I felt by driving, I can decide when to leave .. to a certain extent. I did partially convince my dad to come out and stay with me for a while to just get out of the house. He is back to work but his ambition to save for himself and my mom to take a vacation is no longer there. He's seriously considering retirement earlier than initially planned. He's been in law enforcement for 37 years now and sheriff for the last 13 of them. I'm very proud of my father and he's always been very good at his job. He really is trying to find a new routine in his life but as you can imagine it's not an easy thing to do. As with everything, time will tell eventually...
I do think a lot of not living a long life...and of course the dying part isn't at the top of my list but I am reminded of how fast things can change. I will keep in mind your idea to put things together. It makes sense in a morbid sorta way.. LOL
Well, thank you again for your post and for keeping me in your thoughts... I really do appreciate it...
Having your dad visit is a grand idea! And early retirement means more time he can spend with your family. Sometimes it's hard to find a positive, among so much negative. If he wants to work part time, perhaps he could work at some form of law enforcement in your neck of the woods during the summer months when your area is busy, and still maintain his home. Best of luck, make sure you take that extra time to get back home also, that trip will also be hard on the body and mind.
I ditto everything that Pam said, she said it so well! When I finish an estate plan for a client I always include a notebook with some of the following information. I really add it to the plan as a help for those that have to implement the estate plan so some of the language is about becoming widowed, but I think it applies to all types of loss. I hope some of it helps:
Losing a loved one — whether through unexpected or anticipated circumstances — is always traumatic. It is one of life's most profound losses. The transition is a very real, painful, and personal phenomenon. The trauma of trying to adjust to this new identity while being besieged with a multitude of urgent questions and decisions can be overwhelming.
Here are several things to remember when faced with the death of your loved one. While they may seem simple, they are very important points to remember:
Grief differs based on who we are, whom we have lost, and how much our day-to-day life is altered by the death. A normal reaction to loss, grief is unique in its impact, course and meaning to each of us. Experiencing the loss of a partner, a parent or sibling, or a lifelong friend, with whom we share history, often have special meaning to us.
Thinking about reactions to the loss of a loved one, we tend to think only of the emotional reactions. Yet, people also experience physical and behavioral reactions. The intensity of grief changes over time and through personal growth. Some of the most typical emotional, physical, and behavioral reactions include the following:
Immediate Reactions—The first few weeks following death:
Later Reactions—After the shock wears off, you begin to feel your feelings once again:
Adjustment—A time when you think you are going to "make it":
Remember everyone's reactions and grief are different. The above lists are guides and should not be considered all-inclusive. If you are in doubt about some of your reactions or those of a loved one, consult your physician or mental health practitioner. If outside help is needed, don't be afraid to ask for it.
For weeks after a death, most caring families and friends do all that they can to comfort us, making life as comfortable as possible. Many times, we are still in shock, accepting this support in a daze. Gradually, those around us return to their normal lives, but we do not. The reality of the situation may lead you to think "I am alone," but you are not. Others who have felt what you are feeling now stand ready to help.
Hello Caroline... thank you for sharing this... Just reading through it all really helped immensely... and this may sound weird but it made more sense of how I was feeling as well as showed me I wasn't feeling "wrong" about my reactions to certain things that had taken place through the whole ordeal. I sent it to my dad also in hopes that it would help him too.
I've been back home now for about a week. Things seem very ....hmm, well just not right I guess. I can't seem to put it into words but I'm just not myself in any way. I feel out of place or out of "touch" with things, if that makes any sense and I'm just having a hard time being back and adjusting to the routine of things or the way it use to be. I hate feeling like this...
I am so glad that my posting helped. I have always liked the "counselor" part of Counselor of Law (attorney).
I have been traveling the CML road since late 2010, and all I can say is that time helps. The feeling of being disconnected is real. And in some ways you are disconnected. You have lost a key person in your life. Your family back "home" while supportive, has not been with you every moment of the day, and it is a shock to the system to return back to a life that doesn't seem changed on the outside, and yet, on the inside, everything has changed. Most people will not understand that, and some will say hurtful things without meaning to.
I am in the middle of reading a great book called "The Survivors Club" by Ben Sherwood. If you like non-fiction, it is a fascinating look at what elements are common among survivors and what are not. The biggest message I have taken away from the book so far is that there is no one right way to survive. But that human beings are remarkable at it. That there is something about surviving a bad situation that changes the chemistry in our brain and makes us stronger.
I am so glad that you have found this site and our little group, we are all here to help in any way we can.
That was a great post!! I think that we could all use that. After all, being diagnosed with cancer, we lose our 'normal' life and many of us go through the same thoughts and feelings of grief. I am also very surprised, because I just posted on my facebook page "Do you believe that what doesn't kill you make you stronger"? Then I come here and see your post that says the chemistry in our brain changes with survival of bad situations. I may just pick up that book and read it. Thanks for sharing!
My mom had been diagnosed with pancreatic cancer in Nov 2010 and passed 6 months later, in May 2011. It was so fast and so devastating. I know how you feel, and I am sorry. I think the last line in the document Caroline posted is so true: "Gradually, those around us return to their normal lives, but we do not." That's where I am right now. Hang in there!