Ask Me Help Desk - Life without my "MOM"?

We just found out 1/09/2008 that my mom (my best friend) has terminal leukemia... My brain is doing the best to wrap around this but, it can't get past my mom the rock of the family, the one that never shows fear, always knows what to do or how to fix it... I lost my father at age 9 years old (1975) to cancer; and my mom was so unbelievably strong, together & brave. She then meet a wonderful man when I was 13 yrs old & remarried & they have been married since & still as much in love if not more then when they first married. I am 44 and I guess somewhere in the far cob webbed area of my brain I knew that mom would be gone within the next 15 to 25 yrs, dam she is only 64 years old & yes I know death does not care how old or young you are. Please anyone out there just walk me through the next 3 to max 6months of her...

Thanks
jmiller33

Jmiller, I am sorry for the pain your family is suffering. I can't help you with the timeline. But, we have a nurse that gets on daily, hopefuly she will see your post and be able to answer you. Please check back in tomorrow.

Thank-you Bushg for your quick response & I will for sure check 2 or 3 (maybe more) times a day for the nurse or anyone else with words of encouragement or just helpful words to stop the extremely extremely pain in my chest...
Thanks again it meant more than I can ever express!!

jmiller33

I just did not want you to think that the lack of response was typical.
The closet I have come to your situation was a sil of mine was diagnosed with acute leukemia and it was cureable she has been in remission for about 7 years now. I believe after 5 your considered cured. It was incredible how well she did, when they found it she was very close to death. It is truly a miracle that she did not bleed to death, have a heart atttack or stroke because her blood count was so low.

You are not alone! We will give you support here! I can sympathize as to what you are going through because I lost my father to cancer many years ago. I know what it feels like to be in your shoes. I'm going to let others know about your thread who have also suffered and/or agonized and also those who are experts at dealing with these kinds of situations.

Bushg
Well you see 14 & 1/2 months ago my mom palms & bottoms of her hands & feet just started to peel very large layer of skin off, well now it is to the point that in places, like the small finger where they bend you can actually see her tendons, when I say see I mean there is NO skin at all on places of her palms or the bottom of her feet & they bleed all the time. Anyway to make a long story short her doctors thought it was blood related since they ruled out everything else. WQel they have been keeping a close watch on her white blood count, because when this all started it was about 3,00 to 3,700 counts higher than normal. Well as of 01/09/2008 her whit e blood cell count is 127,324, which they say it should run around 5,000 to no more than 9,000. So you see how very fast this has been been? (14 & 1/2 months or less).

Again thanks you defiantly stopped the tears for a moment.

jmiller33

What type of leukemia does she have?
I know how painful it is to watch someone you love suffer my son has a rare kidney condition that has been in remission for some years. He may never relaspe again or tomorrow could be the day. So in that sense I can feel your pain.

jmiller33, I am broken-hearted as I read your post. For one thing, please know you are not alone as you walk this path. No matter our age, I don't think we are ever ready to let one of our loved ones go. You and your mother are young and it seems all the more unfair.

Having just lost my 37 year old nephew, one of my dear friends, my dad and my mother's best friend this past two years and helping my sister-in-law as she is now dealing with thyroid cancer and going through chemo and possible radical surgery to remove carotid artery, rerouted by a vein in her leg, I can honestly say, I do feel some of what you are expressing. I will be here for you. I am usually up late but I do also check mail through the day. I will check as often as possible for posts.

So many others on this site will also be great encouragers to you. I will pray for you and your mother as you live each day. My brother is always telling my sister-in-law, "No where on your body do I see an expiration date!" :) I know we have to face possible realities but I always say where there is breath, there is hope and I hold to that most firmly. Blessings to you.

Bushg
They are saying its "Acute Myelogenous Leukemia", which from what I read into it over the past 24 hrs or so it's a pretty fast moving one.

jmiller33

jrebel7
Thank-you, so much.

jmiller33

Quote:

Originally Posted by jmiller33

jrebel7
Thank-you, so much.

jmiller33

You are more than welcome and I will be here for you. :) Feeling alone is one of the hardest things when going through illnesses with loved ones, plus feeling frustrated because you can't fix it. You aren't alone! Please know and feel that in your heart. :)

Jmiller that is what my sister in law had they called it acute myeloid leukemia. She was in her middle 40's at onset. That may have had something to do with how well she did/outcome. Her symptoms were dizziness at first.. a dcotor was treating her for an inner ear infection. Then she started bruising badly and had small red dots on her skin. I told her I thought she needed to see another doctor that she could have really low iron. I suspected Leukemia... but did not want to scare her. I do a lot of reading and have also learned a few things from spending so much time in the hospital with my son. She went and AML was the diagnoses.

Quote:

Originally Posted by jmiller33

We just found out 1/09/2008 that my mom (my best friend) has terminal leukemia...My brain is doing the best to wrap around this but, it can't get past my mom the rock of the family, the one that never shows fear, always knows what to do or how to fix it...I lost my father at age 9 years old (1975) to cancer; and my mom was so unbelievably strong, together & brave. She then meet a wonderful man when I was 13 yrs old & remarried & they have been married since & still as much in love if not more then when they first married. I am 44 and I guess somewhere in the far cob webbed area of my brain I knew that mom would be gone within the next 15 to 25 yrs, dam she is only 64 years old & yes I know death does not care how old or young you are. Please anyone out there just walk me through the next 3 to max 6months of her...

Thanks
jmiller33

I'm very sorry; and I will keep you and your mom, along with your family in my prayers. =[ It is a very sad thing losing a loved one, but at least you have time to make the best of it, I lost my brother unexpectedly on October 13th, he had heart failure, he went to bed and never woke back up.

Quote:

Originally Posted by skyprincess

I'm very sorry; and I will keep you and your mom, along with your family in my prayers. =[ It is a very sad thing losing a loved one, but at least you have time to make the best of it, I lost my brother unexpectedly on October 13th, he had heart failure, he went to bed and never woke back up.

Sky, I am so sorry for your loss. Goodness, what a blessing it is to have caring people on this thread like yourself, willing to reach out after experiencing a loss so recently.

I am so sorry that you are going through this, but incredibly happy that you feel your mom is your best friend. That bond between you will help you both through the rough times ahead. I sure do hear you when you say that your brain is doing the best to wrap around this. When I found out that my husband had terminal gastric cancer in July, 2002 it devastated me. He had just turned 52 and we had only been married 10 years. He had never been ill in the 16 years I had known him, until the year he was diagnosed. He was given 2 to 6 weeks to live in August, but passed away in January, 2003 – almost 5 months to the day later. My daughter and I actually experienced 5 losses in a little bit more than a year – all people who we were closely bonded to. 4 of those were within 5 months, and 3 of those were within a one month period. My brain is just beginning to wrap around it all 5 years later!

I do know that each loss you experience in life opens up the emotions from your previous losses so I imagine you may be dealing with a lot over the next little while. Please know that you are not alone, as others have indicated on this thread already. We have a great bunch of caring people here, with lots of life experiences, as well as people working in the health field. My guess is that we will all take turns trying to be supportive to you during this time as we are able. I do know this – as long as you post here, someone will respond.

It is also wonderful that your mom has such a strong love with her present husband. I am sure that the three of you will be a source of support and love to each other as well. Do you have any other sources of support? Try to surround yourself with any and all support that you can get!!! Don't be afraid to ask for help when you need it – whether that is practical or emotional.

I would like to suggest that you contact your local hospice and ask them what types of support you might be able to get within your community. They were absolutely wonderful with me when Terry was ill, as well as afterwards. I don't know how I would have made it through without them. They even provided me with a wonderful volunteer to spend time with our adopted daughter with special needs who was only 11 when he died. I poured so much of my time into trying to make him as happy and comfortable as possible that I needed someone to just be with her and be silly with a bit of homework help. The woman who befriended her stayed with her through her grieving period, gradually reducing her time in a healing, caring way… tuned in so well to the fact that she had experienced so much loss in her short life that it needed to be a well thought out process.

Anyhow, I just wanted to let you know that I will be here for you as often as I able. It is a bit of bad time for me right now, as the anniversary of my husband's death nears, so there might be times that I am not able to be as supportive as some others, but I will read and post as often as I am able. I WILL walk beside you.

Warm hugs,
Didi

Honey, first of all, so sorry that this tragic episode is happening to a family with a lot of love and respect for each other.

I too am going to pass on through adenocarcinoma (lungs) and have between 9 to 12 months left, although my cancer seems to be in a hurry according to the last tests.

My family is going through the same torture as well and I wish there were something I could do to eleviate the pain you and my family are going through. But the only thing we (your mom and myself) can do at this point is to take each day as it comes and continue to love and be grateful that our loved ones are with us.

You see, none of us wants to suffer painfully, or be on drugs so strong that we no longer recognize those around us, and that - in my opinion and at this state - is our greatest concern. Also it hurts us to see our loved ones try and cope with something that neither of us has power over. The inability to control and helplessness is the worst of our current symptoms.
I'm sure that your mom went through the depresssed stage, denial stage, and has within herself started to accept her fate - Once the acceptance is there, there is still sadness, but the crucial issue is that we have the opportunity to share valuable and quality time with you (our family) as much as possible. It took me a while to get there too, but one thing I always think about is that as soon as this is over, I will no longer be in pain, go through excruciating doctor's visits, lay in bed thinking of things that I still wanted to do in my life and no longer have the power or energy to do.

I do realize that this is more painful for those I will leave behind right now - but also important is the fact that I will soon be no longer in pain and have final peace. I'm sure, that if you talk to your mom about this, she may feel the same way - after all, what choice do we have..
There will still be times when she will be angry at her body for letting her down like this, and might take it out on whoever is around, but believe me, it is just anger at ones own body and not our loved ones.
To support her and love her - and make her as comfortable as possible right now is the only thing you can do, and it will mean more to her than you'll ever know.
Since I cannot leave home much, and my eyesight is getting worse, my friends and family got a larger television for me because they know how much I like certain shows. My neighbor even ordered pay TV for me so that I can see my favorite Science Fiction Series.. This gesture alone brought tears to my eyes and made me feel loved, respected, cared for - and not alone. Gestures like these or the like will also mean a lot to your mom. If she is too weak to take to dinner, order her favorite meal and have it brought to the house.. let her do and eat anything and everything she has a taste for. If she has hobbies or favorite family events help her do them, or ask her to teach them to you.
She might want to start sharing things with you that don't mean much to you, but mean a lot to her - let her do this also - it's important to her or she would not initiate.
I joined a group of people with the same fate as myself, and asked them: 'If you had the opportunity to be a ghost and spook around, who would you spook and why?' - or, who would you most want to be 'Guardian Angel' for? If your mom is open for conversations of this sort, get her to tell you what her ideas on this subject are.

It is a reality, but we don't have to make it dismal each time it has to be talked about.

I have a 15 month old grandson and I plan on being his Guardian Angel - and I have told my daughter this. The only thing she said then was to please watch over her too as she still needs her mom - no matter where I am.

Also, since we do have the urge to make plans for the future - my brother promised me that my urn will have it's place of rest in his house because he knows how much it means to me to be back in the USA and not here in Germany.
As as been said here on AMHD, you and yours are not alone - and there will always be someone here to help you through rough parts.
The Irish and Scotts celebrate with their passed away loved ones because they know that the pain, worry, sadness and worldly 'crap' is gone and we can rest in peace.. and that our love will still be there, always. I think they know what they are talking about, don't you? My daughter tries to be 'strong' when she's around me, and I let her, but know that it will hurt her. I also made her promise that she will talk to a therapist or someone else she trusts because the time will come when she will break down - that is normal, and it is OK... just know that there are people there for those left behind too.
I don't know what else to say at this point, but to send you blessing and many virtual hugs. Also greetings to your mom and to tell her it is OK to be angry any time she feels like it, because she has the right to keep her dignity at all costs. So don't let the doctors forbid things she wants to do... what have we really got to loose if we do what we want to do now...

Conveying my best wishes to you and yours with all my heart.

Time does heal, and as long as you keep your good memories, you'll always have her with you!

http://smileys.smileycentral.com/cat/16/16_7_209.gif

I was just checking in. Chery, it was so gracious of you to share so much of your thoughts and feelings. Jmiller33, you and your mother are still on my mind. This time in life is so difficult for both sides. My sis-n-law is struggling also with cancer and still has young grandchildren. We do all try to hold strong in front of each other but our hearts break when we return home or to our normal actiivities. Just wanting you to know I will be asking God to give each of you provision of strength, energy for each day, peace in your hearts.

Jmiller,

I suppose I am the nurse that they are referring to... LOL, sorry it took so long for me to read you post.

You are a truly brave person with such a wonderful relationship with your mother. Be lucky that you can be near her in her time of need. I lost my father this summer, and although I was with him during his last few days on this earth, I was 600 miles away during most of his suffering as I could not take time off nursing school to go be with him. He was my hero.

You have had some wonderful advice here... I would like to help you with the medical, if you don't mind.

Her numbers are high, and high enough to be concerned about leukemia. The average WBC is 5,000 - 10,000. Anything higher, aside from in pregnancy, is cause for concern regarding infection. Her numbers, being 125,000 or so, does indicate AML. Has she had a bone marrow sample taken to confirm this diagnosis?

Again, I am so sorry you and her are going through this. Losing a loved one is painful, and the decisions that come along with it are no less painful.

Take this time to tell her often how much you love her and what she has meant to you throughout your life. Also, be her rock... She was your rock when you lost your father at such a tender age, she needs you more than ever now.

Make the most of every hour, and be diligent about telling her how much you love her and appreciate the time that you still have together.

All three of the deaths that have come close to me have been sudden and unexpected, without the chance to say goodbyes or resolve misunderstandings. That has been hard to bear at times. Give thanks always.

My mother had been in ill health for many years but my best friend who was the same age as I who had lupis died within 2 weeks of each other. I knew my mom was going but I didn't know my best friend was going to die that quickly. My friend had given me, about a week before she died, a little white bear with gold angel wings that when squeezed said "I'm your guardian angel, I'm your special friend." She thought the little bear was hilarious and we would laugh and laugh and squeeze the bear together. That was over 10 years ago. I still keep that bear and from time to time I squeeze him to hear him tell me that. At first I would cry and could not bear even to look at him. I don't cry anymore but kind of chuckle and remember her as she was the day she gave me him, squeeze him and think of her and me laughing. We spent a lot of time together also.

My mom and I were best friends for many years also. May I suggest that you do something that I did? I got a tape recorder and lots of audio tapes. We talked for hours on end taping the conversations of her telling about her early childhood, her adventures (she was a private pilot, R.N. real estate agent and a few other avocations thrown in there for good measure), her parents. She talked about the depression and how times were then. This was her legacy so her grandchildren could be closer to her even though she was no longer here.

It was so ironic. My mother could hardly wait to die as she was in a lot of physical pain due to her illnesses and infirmaties. My best friend so desperately wanted to live. I mourned my best friend more as I had plenty of time to reconcile myself to my mother's passing.

Spend every possible minute with your mother as you will have your memories of this wonderful time together to get you through the really tough times that lay ahead.