My mom passed away and im crushed

[Laurie H]

To all you who read this:
My mom Laurie who’s account this is, Passed away on October 23rd from complications of acute lukiemia that resulted from her MDS. She went into the hospital to fight the lukiemia on september 21st and faught her heart out. On October 7th she was told that the chemo had worked and she would be going hom in 2 weeks. On october 20th, I called her and she sounded great and told me she was going to be taking benedryl as she was getting platelets to get ready for a lung biopsy so that they could make sure she was healthy enough to go home as she had an phnemonia but we thought it had passed. The next day she couldnt hardly breath so I rushed in to see her and a day later her Organs shut down and she passed with me holding her hand. It happend that quick, from absolute joy that she beat cancer to her passing. I am devistated and cant get over it. I still dont get what went wrong. In honor of my Mom I am dedicating my life to her cause and fight against MDS. I think to few of us that live around MDS patients really understand this disease and how serious it is. I feel horrible and full of guilt that I didnt sit down with her at the computer and help find maybe that one letter or posting that would have maybe changed the outcome of her passing. I want you to all know that Im going to fight for you by getting people to give blood and platelets, help gather information for families to better help there loved ones with this disease, and just get the whole MDS disease into the spotlight. I wish you all the love and best. R.I.P. Laurie H. 9-4-1953 to 10-23-09 I love you!

Gary H.

[Mary4Mike]

Dear Gary,
I am sorry to read of the passing of your mom, Laurie. I can’t imagine what you are going through. Please don’t feel guilty about not finding a treatment for your mom on the internet. If she was in the hospital and receiving chemo, it sounds as if she was working with medical people who know what is available for this disease. The fact that she contracted pneumonia is something that can happen when your blood counts are lowered from chemo. Her body was in a weakened condition and had nothing to fight the pneumonia with.

It is wonderful that you are going to enlighten people to the importance of donating blood and platelets. Most people on this forum are recipients of this wonderful gift of life from total strangers.

I pray that by shedding light on this disease and telling people what they can do to help will ease your heavy heart and will leave a wonderful legacy to your mom.

Take care,
Mary

[Esther]

Gary, how very sad this news is, and you must be devastated. Please accept very sincere condolences to yourself and the family and it’s a wonderful aim to bring this dreadful disease and it’s consequences to the attention of a public who seem largely almost unaware of it. I wish you every success in your endeavour and I truly feel for you in your sorrow.

Renée

[Ariana]

Laurie is my mother as well and I too am devastated that she never made it home from the hospital. My heart is broken because I have lost my best friend. I also want to help in any way I can to help fight this because I don’t want anyone else to lose their mom at such a young age. I love her so much!

[katydid]

Ariana and Gary – I am so sad for you both that you have lost your mum. I greatly valued the talks I had with her, both on this site and privately – where she was so supportive of me. I have often felt at odds on this site – a bit of cultural shock because we seem to communicate so differently here in the Antipodes than you do in US of A – But Laurie was a great communicator and went to great lengths to make me feel welcome and share her love and her wisdom with me .
I don’t know how old you guys are but I have a daughter of 34 and step daughters of 22 and 19. I am 51 – so not that much different from your mums’ age – if I die from this bloody thing called MDS – then I hope and pray that my kids honor me as well as you honor Laurie – your mum.
And as a mum ( I think you guys say mom !! ) I have to say 2 things to you – 1. remember the important stuff – the love, the joy, the laughter, the fun, the lessons, the stories, the truth, the games, the holidays, the warmth, the anguish, the hurt, the grief, the journey, the cuddles, ( and of course , the ice cream !! ) 2. move on and live your lives – we do not want to be stones around your necks – you honour us most when you fly – so fly xx

[maggiemag]

Beautifully said, Cathie. What a shock to have things turn so rapidly; I just do not get it. I don’t know what to say, but prayers are on the way to Laurie’s family.

Mags

[katydid]

Hey – its been a while since I was here. Still makes me cry to remember how sad I was when Laurie passed – and how much that made me have to face my own death. I hope you are all as well as can be – maybe I will start a new forum – and be a bit wild and contentious – make people react and be angry with me – you americans are so tame and polite it drives me nuts !!!
Cathie

[katydid]

Hey – I have not been here for so long that I have forgotten how to start a new thread – but never mind – I think I will stay with this one in honour of Laurie – so………
how are all of you going out there ??? how is it facing your own mortality, facing the fact that people get on with their lives whilst you look in the mirror and think ‘ I might die this year’ ,
I have this notion of being a sick old antelope – you know , when you start lagging behind the herd and the lions are just out there waiting to bring you down – and you try and be strong and keep up, and you try and have others believe it is ok – but you start to realise that they are looking forward and not back to where you are – and you start to know how alone really feels – thses are my thoughts guys – I am interested in yours
C xx

[Kenneth_In_Va]

Hey Katydid,

I know how you feel. It’s only been 5 months since I got this life sentence (MDS) and I have been "all over the map" with my emotions ever since.

Like some on this forum, I was in good shape physically up to that September day that I couldn’t keep up with my family on a Sunday morning hike in the Blue Ridge Mountains. Apparently I had been anemic for some time but my body just worked around it somehow. I mean I was playing six to 10 sets of competitive tennis a week and doing ok for a 62 year old guy.
Then, three days later, I couldn’t walk 30 yards without gasping for air and having my calves on fire.

A few weeks later, after the BMB, I had THAT talk with the Oncologist. You know, the one where they say a whole lot of "we’re not sure" and "don’t go by the statistics"…then you have the other talks with your minister and finally the hardest one…the one where you try to explain to your 10 and 7 year olds that Dad is very ill and that it’s nothing they’ve done that’s caused it.

Today, almost 8 weeks after starting Revlimid (10 mg. daily for as long as it works), I had a CBC that showed my RBC has actually gone up above the maximum level I have had even following my three transfusions every 6 weeks in the past! My WBC has dropped about 25% from when I began Revlimid (3.2 down from 4.3) and my platelets have fallen from 400 to 157 but that’s still in the normal range. So here goes the roller-coaster ride. Today I celebrate. This afternoon I delude myself into believing that I’m going to be the one who beats this Monster of a disease…Tonight before bed, I will go in and check on the boys as they sleep and I will start to cry and go to sleep that way wondering how old the oldest will be when I die from this disease.

Whew, probably shouldn’t post that much at one time but it’s cathartic to some degree. I guess the best we all have is the moment. Tomorrow isn’t guaranteed to any of us. In a way I wish I was still ignorant about my diagnosis. But I’m glad that I have time to get my affairs and relationships in order more than the pre-MDS me would have. That guy was such a procrastinator.

Kenneth in Virginia

[katydid]

Thanks for responding Kenneth – and don’t apologise for the length of your response – I think there are very few places where we can say stuff honestly without having to deal with all of the reactions that we get from friends and family. My sister is not talking to me any more because I yelled at her during one of my many meltdowns – she says that we should go to therapy together to work out our relationship so she feels able to support me !!! that kind of reaction is not what I need. I have given up smoking ( of course because I had to because I am booked in for a bone marrow transplant ) so I feel like rubbish. My husband has also given up in support but in the process has undegone a major personality change and I don’t even feel like I know who he is anymore. Of course he is really stressed out because soon he will be the sole bread winner and have to take care of me – I think he is real angry but feels like he has no right to be so he has just distanced himself from me.
My daughter is due to give birth to my second grandson in a few days – my first grandson has just turned 13. And like you I look at him and grieve that I may never see the man he will become. This condition is like living in a grief vacume where it is impossible to move anywhere – you can’t go back because you know now that you are sick, and you can’t go forward because you have no idea if you even have a future. And people get so so tired with you – I am impossible to deal with – angry, anxious, sad – and people are increasingly keeping their distance – maybe that is what I am trying to create !!! and tired – oh so tired – people say – oh you look really well, oh you don’t LOOK sick, oh you are still working so it can’t be so bad. And all you can say is – I am just so tired
Sorry – I don’t mean to sound so maudlin – but feeling that way at the moment

Cathie

[lindajo]

Dear Arian and Gary, Don’t feel guilty about not helping your Mom more. She knew that you loved her. She will be honored by your new dedication to educating others about the disease.

Pnemonia can sneek up on anyone at any age. She did her best and fought as hard as she could. She was often an inspiration to others. Remember her and be proud of her for that. We will remember her here.

[mikeirbyusa]

Arian and Gary, so very sorry for the loss of your mom. Wish I could tell you that time will pass and the pain won’t be as strong but that would be a lie. My mom passed @ age 62 21 years ago and I still miss her like crazy! May sound funny coming from a 61 year old who was never a "mamas boy" but it’s true.

GREAT that you are joining the fight against MDS! Two years ago I was diagnosed with a very rare, very aggressive Thyroid Cancer. Insular Carcinoma is the proper name for it. After 7 weeks of radiation, 5 days a week it seemed I was gaining ground. Just had a scan last week and I’m still cancer free! That’s the good news.

Bad news is, that somehow along the way I got MDS, 5q-. They aren’t sure if it was from the radiation or the I131 treatment I got but at any rate I got it!

Like others have said, hard to talk with family and friends about it, they don’t want to hear that this monster is going to kill me. I’ll do my very best to help others thru this as long as I can and God Bless folk like you two who are willing to help!

We all in this thing together, I read this in a book at the Cancer Center one day.

"An individual doesn’t have Cancer………………a FAMILY does!"

[maggiemag]

Cathie, so glad to see you post! I know what you mean about those who say that you look just fine, or you don’t look sick, or some kind of thing like that. I just want to slap them, really. I don’t know if you remember, but I have a host of other serious issues, some of which the doctors haven’t figured out yet. I have early MDS with chromosomal change and mild myelofibrosis, but am still not needing transfusions. I finally said to one well meaning person (I suppose she is anyway), that when she says *well you look fine*, that it makes me feel like I am making it up and exaggerating my conditions. If anything, I am minimizng it! I am an RN and DO know what I am talking about! I am lucky to be here. She was embarrassed but I don’t think she still *gets it*. I am tempted to go without makeup someday and people will see how bad I really look! Haven’t been able to bring myself to do that yet…..

I am sorry you are having a difficult time. Keep us posted on the BMT.
Mags

[mikeirbyusa]

Glad I’m not the only one who has a real problem with folk who ask "how are you, you look just fine".

[katydid]

So good to hear from you Mags – and good for you for standing up to her – thats why I say this is the worse kind of alone – because if we were all underweight and swooning palely on our pillows people would bring us chicken soup and grapes and wipe our fevered brow and put their own lives on hold to tend to us – but most of us – well we look ok , we work, we cope, and so they think we are ok – well, over exaggerating, and then they say such bloody innappropriate things !!!When I punched back ( metaphorically ) at my sister – she told me I was using my illness to manipulate my ‘nearest and dearest’ so we can’t win !!! sometimes I wish I hadn’t told anyone what the diagnosis was – then at least sometimes I could feel normal – instead of like the "nearly but not quite – so you still have to deal with her – deceased "!!!!
Sorry for raving !!! welcome mikeir – good to have you on the thread – how many times have people said that ah!!!! and like Mags says – you end up feeling like a fraud , while inside for me I just want to scream at them – don’t you know I’m dying here ( actually I want to scream much worse than that but when I swear on here it deletes my post !! ) but I will share a secret with you – nothing was worse for me than when – in the early days of this, both my sister – and a few days later my best friend, both couldn’t cope with my meltdowns and both said – Cath – you have to undestand, I have a life to live and I can’t spend all my time dealing with your angry phone calls – ‘ I think that was the worse thing I have ever heard – they couldnt deal with me because they have a life to lead – I wanted to say – I didn’t but I wanted to – lucky old you – you have a life to lead –

Cathie x

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