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Just Wanted To Share Some Encouragement, Especially For Moms


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Hi everyone, I'm not a mom myself (trying, but no luck yet :) ). But I wanted to share a quick bit about how we can still help other people while we are going through serious illness.

I've shared before about my mom. She's had carcinoid syndrome for nearly 30 years. She had her first flushing/panick episode when she was my age (late 30's) although she feels she was ill before then but didn't know what it was. As her flushings got worse, along with diarrhea, fatigue, mood swings, etc, she began going to her doctor. She went to him for 8 years and was told that she was early menopausal, depressed, crazy. It wasn't til she saw a really persistent endo who ran a 5HIAA and diagnosed her. She everything happened really fast as she had a scan and was taken to surgery and had 1/3 of her colon and small intestine removed. The surgeon found metastases in her liver and gave her a year to live. She quit her job and tried to adjust to her new prognosis. She was also underweight and the surgeon told her to drink milkshakes and eat lots of cheese.

After surgery, she kept having more abdominal pain and lost more weight. The surgeon kept telling her to drink milkshakes but she got sicker. Finally, 6 months after surgery she saw a GI doc who told her it was obvious she was lactose intolerant. The surgeon cut out the part of her gut that digests milk! She cut out dairy and, voila, started gaining weight. She even felt good enough a year after surgery to return to work! She never had thought this was possible, and she and my dad assumed she was "cured" and started telling everyone so.

Seven years later, my mom and dad were on a vacation in Hawaii when she had her first flushing episode since surgery. She immediately knew what it meant. This time, she researched and found a local carcinoid support group and a surgeon who actually knew carcinoid. She had another surgery, laparoscopically, and the doc said it looked like a pepper shaker was dumped in her abdomen, little spots of tumor everywhere. She was put on octreotide and told to follow up every few months. She left her job again, permanently this time.

I was quite devastated at hearing her cancer came back as I'd been told that she was cured 7 years before. I was working as a nurse, and I knew what life was like for people with cancer. I knew what my mom would have to face as time went on. Carcinoid syndrome is the slowest growing cancer you can have, but I didn't find that consoling, knowing that her suffering would just be prolonged. I cried myself to sleep for 6 months. But I also started really talking with my mom, trying to help her get the best treatment, most knowledgeable doctors, and we started getting really close. After 6 months, I decided my mom wouldn't want me living as though she was already gone, but would want me to embrace every moment of this life we've been given!

I've watched my mom get sicker over the past 4 years. She can't eat much, but has to supplement her diet by drinking tube feeding in order to keep her weight on :wub: . Ugh! She's the first patient in Oregon to get a pump for her octreotide. She takes about 80mg a month. She greets everyday with a smile. She calls me every day to check on me. You wouldn't know by looking at her how ill she is! She is beautiful, but mostly she wears a smile so believeably. She often talks with regret about not being able to help me more :( . She doesn't know how much she has helped me already, though! I've gotten to watch my mom go through disability, pain, uncertainty and grief and come out the other side with so much peace and grace! What a gift!

For those of you who regret not being able to do more for your loved ones, please know that your example of perseverance and inner contentment is so much more of a gift than tangible things! Your loved ones are going to go through hard times sometime in the future, and they will remember your example. You are giving them courage to face hardship, strength for adversity and joy for times of grief. Don't give up!

I will always try to live my life with thankfulness because of my mom.

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Janie,

I am in tears crying! What a beautiful story. I can see where you get you kindness and compassion for other people. I can see how close you and your mother are. What a positive attitude you both have. Your mother and you will be in my prayers. Some truly wonderful people come out of some of the most difficult situations. I can see that has happened here. Thank you for sharing this encouraging story.

(((((HUGS)))))))

Suzy

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Crying in Orlando too! Thank you so much for your story.

I feel guilty all the time as my kids have seen me very ill now two times in their young lives. After my first bout with illness I thought I would never have to go thru anything like that again...and altho I can walk this time (albeit not far) I am sick again with POTS.

My kids always tell me that it counts so much that I still try so hard for them.....I still feel like a failure many days. But they tell me that I show them the true meaning of perseverance and determination. I mostly don't believe them....but then there is your story with your mom....Thank you. Erika

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Thanks guys, we're crying all around now! Your replies are so sweet, and it's evident how each of you care for your friends and family and wish your bodies would let you do more. I just wanted you to know that the most important memory is the character we leave behind. I'm so blessed to have my mom!

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