My mother was 68 years and just one week last Monday. She lost her battle with cancer - we all lost her battle - when she passed away Monday the 26th.

I am filled with anger, saddness, dispair and regret. I have experienced moments of joy and light, as I have felt her presence since her passing. But moments of sadness keep returning and I am drawn to this forum to share with others with similar experiences.

My mother was diagnosed summer of 2008 after many weeks of painful swallowing and weight loss. She was on this board: scaredinvirginia. Cancer of the tongue, classic squamous cell carcinoma. She completed induction chemo and then chemo/radiation at Johns Hopkins in Baltimore. She was feat of strength and courage as she lost weight, lost her hair, her voice became hoarse and scratchy; she supplemented nutrition with a peg tube and took chemo through a picc. We rented an apartment in Baltimore during her therapy and she forced us to work puzzles with her and watch tv - a testament to her endurance and 'let's life life' attitude. She had an artificial mitral valve in her heart from years prior and during the treatment her heart gave her some trouble. There were 2 hospitalizations during treatment, but she persisted.
After completing therapy, her prognosis was good but her body was weak. My brother and I (her two only children) announced at Thanksgiving that she was going to be a grandmother. (Interesting and uncoordinated timing.) She was thrilled and spoke of (and bought things for) many years with the 'grands.'
Christmas came and she was weakened physically and spiritually. From the loss in weight, she was constantly cold. She wasn't eating much by mouth and admittedly should have done more tube feedings. We enjoyed time together but it was clear she was not better.
By spring, her strength and weight zapped, she began to obsess that her cancer had returned. Her doctors had been advising her that recovery is a slow process, but by spring were cautious to keep with this. May 30th she was given a clean PET scan, so she told family and friends her cancer was gone. However, her mouth had practically closed and she was often too weak (orally) to speak over the phone. Thank goodness for the world wide web; we communicated via email much of the spring.
My nephew - her grandson - was born in early June and I was due to have my daughter the next month. My mother visited her grandson in Atlanta and shocked my brother at how weakened she was... but Mom enjoyed her visit immensely and my brother seemed to appreciate her being part.
July approached - my due date came and went - and my daughter was born healthy 2 weeks late (sheesh!) and my mother came up to see me in the hospital. (I have since learned that she didn't drive herself. She was so heavily medicated, she wasn't driving at all. She never told me that.) Shortly after both 'grands' were born, Mom was given a new diagnosis: cancer returned (or never left) and options were 1) low chemo 2) surgery or 3) do nothing.
My mother was never one to sit idly by; she chose to have surgery to remove the tumor, which involved a 10 hour surgery at Johns Hopkins, removal of the tongue but fortunately, not of the voice box. I believe she surprised the medical team by pulling through it so well. I visited her many times in the hospital, then rehab facility, then hospital (when she had a diverticulitus scare and was told she may have surgery again... until her belly calmed down and all was okay again), then rehab facility, until 7 weeks past. She was anxious that her mouth was still tight and couldn't open well; her voice was hoarse and articulation poor, but her speech improved quite a bit during those 7 weeks, to the point where I could hold a reasonable conversation with her on the phone. One concern in the rehab facility was to remove her trach tube. Toward the end of the 7 weeks, it was removed a few more hours each day, until it came out permanantly and she was told she was safe to return home in a few days. The day after that, she had an episode in rehab where mucous formed and created a vacuum; she couldn't breathe and had several nurses and staff help her through it. That was a Friday night, the morning before she was to be released. Her doctor suggested she stay another night to be safe... she did and we arranged for me to take her home Sunday morning.
After much prodding from her family (her son, her sister and I) she assured us she would happily stay in rehab if there was a concern, but that she was given a load of meds, instructions and doctor's appointments and was released to go home.
My husband, 3 month daughter and I picked my mom up and returned her home (2 hr drive from Johns Hopkins) Sunday the 25th. I was cautious for Mom to hold my daugther (new mom fears of grimey germs in the hospital) but we enjoyed almost an entire day of visiting. She was anxious and happy to be home, after having been away 7 weeks. I have a picture of her standing in front of the Hopkins Bayview rehab center with a big smile on her face. Even at a weakened state - more weak than I could have known - she was poised and smiling.
Left her home alone - by her request - and returned home. Spoke with her Sunday night and she was well; got 2 emails from her Sunday night and she viewed some photos online of her grandson.
Monday morning, it seems she did 2 tube feeings, took some perscribed Morphine for pain and did not answer the phone - not entirely unusual.
I got a call that she had missed an appt - unlike her - and began calling around. Her neighbor, a friend, found her in her kitchen, slumped in her chair. They will not perform an autopsy, but according to the doctors, was likely a cardiac arrest, and would have sudden. I can only hope she went mercifully quick.

It has been just over a week and I am replaying every moment of our last day together, our last 7 weeks and just now beginning to revisit the last year and a half.
I'm not sure where along the way I was so naive or so optimistic to believe that she was kick cancer, but I really did not expect this outcome. My brother says, 'not surprising, but unexpected,' but I would have to say it came unexpectedly to me.
Maybe it's that I was in the battle with her so closely that I couldn't see what was happening before my eyes.

Many have suggested that Mom hung on to spend time with her grandkids. I am grateful for that, no doubt.
I am also feeling the greatest loss I have known.

Not sure what to end with, but I want to return to this board and share. I appreciate you taking the time to read my message.

I want to express my sincere sympathies to you and your family. It is a great loss and she sure sounded like a fighter!

Thank you for sharing your story with the forum. I lost my brother to tongue cancer in 2006, he was 47 and it seems like yesterday, I am struggling everyday and reliving our last moments as well.

You and your brother were such great support for her and I am sure she is smiling on you both. It is wonderful to hear that she did get a chance to see her grandchildren tht must have brought her so much joy and happiness.

She sounded like such a strong woman, fighting every minute, much like my brother did as well. He did not want to give up for a second, he would go for surgery after surgery, chemo, radation, clinical trials, he lost his tongue as well not to surgery, but he fell apart after so much radiation to the tongue. But to see his desire to live, gave me strength as well. My life changed in an instant the day he was diagnosed. I know now what life is really about and the little things don't matter as much.

I cant say you won't struggle with this for a while, it is a great loss, but know you were there for her every minute. YOu were her strength, you gave her love and that is all we can do sometimes. It is the saddest and most frustrating thing to watch someone you love be in pain and you can't do anything to ease it. I wanted to scream, and most of the time I did! But I know I was there for my brother until the day he passed, and I told him I loved him everyday. This helped me alot knowing he knew we all loved him so much. I have regrets too, maybe I should have spent more time with him before he got sick? But I was there when he needed me the most, that is what you did as well.

You were there for your mom when she needed you the most, and that should be a little comforting to you.

You do need to grieve and that is expected, just take care of yourself and your new baby!

All my best,

Susan

THANK YOU for sharing your feelings. She was indeed a fortunate woman to have such a loving family and two healthy beautiful grandchildren. I am glad you are aware of her presence. She will continue to guide you as you hold her in your heart.

I am very sorry for your loss, and hope that in time all your happy memories of time with your mom will overtake these feelings of sadness. Rejoice in her life. She sounds such a strong, vibrant, determined woman. She has truly left her mark on this world through raising such great children.

Donna

Please except my condolances on your loss!!! Semper-Fi Bob

So sorry for your loss.

My condolences. Your Mom fought her cancer with all she had, unfortunately that is not always enough. Take comfort that you and your brother did everything you could to support your Mom showing your love in so many ways. She was fortunate to have you by her side and no doubt she knew that. There will be difficult days ahead dealing with your loss, perhaps you could make a book of memories of your mother to share with your daughter when she is older.

Please accept my sincere condolences and thank you for sharing your story. I'm sure your mom knew how lucky she was to have such caring and loving children.

I wish you the strength to get through this time of grieving.

So sorry for your loss. Thank you for sharing your story with us. You guys did a great job supporting her through a tough time. My prayer are with you.

Hi Daughter in VA,

Your post is very moving and I'm sorry for what you are going through. Thank you for sharing with us and I hope you know you can talk to us here.

Also, I don't think it is naive to think she may make it through. That's the way you have to think and she was strong to the end so you had reason to think the best.

My uncle passed away from Pancreatic cancer 2 years ago and it is very sad and hard to lose someone so close, especially for you losing your mother.

You will be in my thoughts and prayers and I hope you continue to post here and let us know how you are doing.

So sorry for your loss!