My Mom Passed 28 Feb 13, 6:06 P.M.

[mymomismyhero]

All,
I only joined this forum about 3 weeks ago, wish I had done so much earlier. My wonderful, loving, selfless, mother (and best friend) passed away 28 Feb after only being diagnosed with MDS last summer. She was only 73 years young. The Dacogen ruined her lungs (after 4 rounds) and she was just about to start Vedaza when she passed.

We honestly thought she was going to beat this but she plummeted in a matter of only days. She went from being amazingly fine on Friday (22 Feb) to not being able to hardly breathe on Monday (25 Feb). I took her for a transfusion/platelets to our local hospital on Tuesday and with 12 liters of oxygen she couldn't get beyond 83 percent. Got her admitted and by the next afternoon I begged for some help for her breathing so they put her on a BIPAP (mask) at 15 liters. She got so much relief from the forced oxygen, she asked me to take her picture in the ridiculous mask. I spent that night in the hospital; during that night she got more blood and platelets. By the next morning she began to struggle to breathe again.

Because she was suppose to start Vedaza on Monday, her, my brother and I, decided together to get her a breathing tube put in. Although we knew she would be given morphine, we had no idea she would be sedated to the point she couldn't even communicate with us via paper/pen. They moved her to ICU to put the tube in and she was breathing good by about 0800 or so. About an hour after, we discovered she could still hear us even though she was sedated. Our minister came and asked her if she wanted him to pray; she opened her eyes and shook her head.

We talked to her all day long and we felt she was still going to be okay. By about 4:00 however, she began to feel clammy and her blood pressure and breathing started to decline. She left us at 6:06 P.M. that evening--it was the hardest day of my life!!

There is so much more to the story and, perhaps, when I can take my emotions out of it, I will tell you the rest. The one thing I will say, however, is that her local cancer doctor has no business being in her field. She was called 8 times the day before my mom died to come in, see her, and order her some more blood/platelets. Three of those calls were from me and one of them included me begging and crying for her to return my call. She was also called by our family doctor twice and the hospital nurses 3 times. That doctor did not show up until about 3 in the afternoon and mentioned she was late picking up her daughter and that she had so many more patients to look after. The horrible part is, she could have faxed the blood/transfusion order in first thing that morning.

I don't know if that blood/platelets would have made a difference but the fact is, I will never know.

For those of you out there going through what my mom endured, I certainly hope you have great doctors that actually care about you as a person and not just consider you another name on a piece of paper. It's hard enough to lose someone you love without having to feel so helpless in that you can't get someone to at least help that loved-one feel as comfortable as possible as they are passing.

God bless my mom and god bless all of you who are going through this or supporting someone who is...

Sheri

[Neil Cuadra]

Sheri,

I'm so sorry that your mother lost her battle and that you've lost your mother. Your "mymomismyhero" username already told us the most important thing we needed to know. This must be a very painful time for you and your family and I wish we could take away some of that pain.

It's hard to understand why Dacogen and Vidaza help one patient and hurt another. Someday science will answer these questions and we'll know exactly how to extend lives like your mother's, but for now this disease takes from us very special people who are so loved by their families. It must be even more heartbreaking because you think her care should have been better, but it's clear that the care and attention she got from you was all she could have asked for. I'm glad that your mother didn't seem to be in pain at the end, and that you and your brother were there. I'll bet you were her heroes.

When losses like this occur and we can't answer the "what if" questions, we need to somehow put them aside, along with any undeserved feelings of guilt, so we can concentrate on helping and comforting each other and remembering the best that our loved one's lives gave to us. I know it's not easy, but I hope that writing this has helped you process some of your feelings, that other families will read the advice you posted, and that you find peace despite your loss.

[Momhope]

Im so, sorry..I can imagine your pain , I am currently taking care of my mom and I can not imagine what I would do when I get to this point.. I AM so, so sorry for your lost. God bless you always

[bebop]

I am so so sorry for your loss. I will keep you and your family in my prayers.

[Sally C]

Dear Sheri,
I pray that God bring your family comfort and peace as only He can.
Your Mom was very blessed to have such a loving family and I'm sure it made her last days much easier.
I am so sorry for your loss.
God Bless,
Sally

[KathyM]

Sheri-
My heart is breaking for you - I'm at work and I had to close my door before someone sees me fighting back tears for you-

I hope you can take some small bit of comfort knowing that your mother KNEW how much you loved her - how much you cared for her well-being. You were with her at such a vulnerable time - doing everything in your power to help her. She was a lucky lady to have a daughter like you.

Thank you so much for being brave enough to post your story today - we are strangers across this virutal world - but so many people really do care how you are-

Take good care of yourself - your mother would want you to-

Let us know how you're doing in the difficult weeks ahead.

[Cheryl C]

Deepest sympathy for the loss of your precious mother. I too pray that God will comfort you. You can find peace in the fact that you did your very best for your mum and that you have beautiful memories of your relationship with her.

[mymomismyhero]

All,
I just want to thank you for your kind and comforting words. It was 2 weeks yesterday and I still can't believe she is gone. I finally went back to work Wednesday in an effort to try and get back to normal--whatever that is. My pastor told me it is the "new" normal so I guess I will just take it one day at a time.

Mom taught me so much and hasn't stopped even after her passing. She is so organized that my brothers and I are able to handle her affairs with little problem. She had her obituary draft written (has for years), her funeral music and type of flowers chosen, how/where she wanted the funeral to take place (all at one time; calling hours, service directly following, and no procession to the grave yard), and instructed us to not go over board in regard to money. She had a policy in place that will pretty much cover the funeral, had all her account #'s/user id's/passwords on a spreadsheet so that we could easily close her accounts, and barely had any debt.

We have 60 acres of family property that she already identified on a "transfer on death deed" to my brothers and I. She identified my middle brother as executor of her will but we are all working together to take care of her affairs. We are a very close family and I know we will get through this with no arguing over material things--this is very comforting to me!

Anyhow, I just wanted to share that she has shown me that I really need to get organized for the sake of my two wonderful children so that they, too, would know what to do in the event of my death.

Just wanted to share again what a wonderful mother I have!!

Take care,
Sheri

[Al's Wife]

Sheri,

I too am so sorry for your Mom's passing. But it is truly a tribute to her that she has raised children who can "take care of business" without all the inner fighting that so often happens in families.
After my Mother passed in 2002, I found it comforting to write to her. And at night when I couldn't sleep I would get on the computer and write, write, write. Of course I talk to her even to this day, but I found that writing things back then helped me. So it's just a suggestion.
I'm glad you are trying to resume as much a normal life as possible. And, even though a part of you died when she passed, you will smile and laugh again and the pain will ease with time. You don't ever get over it, you just learn to live with it.
Peace and comfort to you,