March 28, 2006 at 7:08 am #12441JAGGYONEMember
I’ve written so many messages and then deleted them before posting. I’m at the point now where I need help coping with my husband’s MDS and don’t know what to do. He was just over 18 months post-transplant when a bone marrow biopsy showed he no longer had 100% donor marrow. His is coming back and what’s there are the defective chromosome cells. His counts have fallen to levels close to what they were during his chemo and his electrolytes have dropped to critically low levels. He is also suffering from severe GVHD and not only feels bad physically every day but he hates the way he looks and won’t go out except to see the doctor. He is literally nothing but skin and bones. It’s so hard for him to be so sad and to feel like he has no quality of life left any more. He can’t do anything that used to make him happy and that includes eating. He is 5’10” and weighs only 120 lbs. With each passing day, he feels more and more like giving up and stopping all treatments. I don’t want to lose him but have reached a point where I can’t stand to see him suffering like this any more. I try so hard to be strong in front of him but it gets harder each day. My heart can’t break into any more pieces. I know that he continues fighting for me (so I won’t be alone) but I told him that he needs to fight for himself (if that’s what he wants) and not for me any longer.
I know I’m rambling and I apologize. If there’s anyone who has some advice on how I can cope better I’d be grateful to hear from you. My head tells me to prepare myself for his letting go but my heart can’t deal with or accept it. I don’t even know what to say to him these days.
Please help if you can.
Everyone of you are in my thoughts and prayers and I wish you strength, courage, laughter and only good things.March 28, 2006 at 7:53 am #12442sdrakeMember
I want you to know I am praying for you and your husband.
Yesterday as my family and I were leaving church I asked my mom what her favorite Bible verse is. She said she has many, but one of her favorites is Proverbs 3:5-7 Trust in the Lord with all your heart,and lean not on your own understanding;In all your ways acknowledge Him, And He shall direct your paths. I found that very comforting – I hope you do too.
sdrakeMarch 28, 2006 at 8:55 am #12443seekayMember
Did you ever consider trying the Gerson therapy? The Gerson Institute is based in San Diego, and is run by Charlotte Gerson (daughter of Max Gerson, MD, the creator of the therapy). They have a fully licensed clinic, called the Baja Nutricare Clinic, in Baja California.
The therapy is completely non-toxic. It consists of detoxification therapy via diet, coffee enemas (also sometimes chamomile and castor oil enemas), a highly nutritious diet including the consumption of freshly-prepared juices (containing the full complement of known anticancer phytochemicals and live enzymes), and certain natural supplements designed to change the body’s chemistry to create an environment in which normal cell metabolism thrives and cancer cell metabolism does not. Two weeks at the clinic, for you and your husband (so you can learn the therapy) costs approximately $10,000. You can also try to do it yourself at home, though you should have lots of input from Charlotte and others experienced in the therapy to have the best chance of success. There are important details that can’t be overlooked (e.g., not bathing in chlorine, fluoride, and/or sodium laden water; not ingesting too much water, which depletes stomach acids needed to digest and to absorb nutrients). The therapy is tailored to the individual’s needs, overseen by MDs who monitor bloodwork and adjust therapy both at the Clinic, and afterwards. There has been discussion about it elsewhere on this site. Also, Marla, Jimbob, and John Hess are doing similar therapies with good results.–CKMarch 28, 2006 at 10:00 am #12444DonnaMember
I certainly feel your pain – it’s so scary, to say the least. I think the best we can do, is one day at a time, get through each day as it comes, no ones knows what tomorrow will bring for any of us. For us that are not the ones suffering from the illness (directly) it’s difficult to know exactly what one is feeling, we have to accept be there to listen and validate their feelings. I wish nothing but strength and courage for you and your husband. Please remember to take care of yourself, your husband needs you, so take time for yourself when you can.
DonnaMarch 28, 2006 at 5:31 pm #12445JAGGYONEMember
THANKS SO MUCH FOR YOUR PRAYERS AND WORDS OF ENCOURAGEMENT. WHEN WE FELT THERE WAS A LIGHT AT THE END OF THE PROVERBIAL TUNNEL, IT WAS A LOT EASIER TO GET THROUGH ONE DAY AT A TIME.
NOW, WITH THINGS SEEMINGLY GETTING WORSE EACH DAY, IT’S NOT THE SAME. BEFORE, HE WAS WILLING TO UNDERGO ANY TREATMENTS OFFERED, BUT IT’S BECOME A STRUGGLE JUST TO GET HIM OUT OF THE HOUSE TO GO FOR LAB WORK. I CAN’T EVEN IMAGINE WHAT IT MUST BE LIKE TO BE ON THE VERGE OF DECIDING THAT LIFE ISN’T WORTH LIVING.
YOU’RE ALL PART OF SUCH A SPECIAL GROUP AND JUST KNOWING THERE’S SOMEBODY ALWAYS WILLING TO LISTEN MEANS SO MUCH.
THANK YOU FROM THE BOTTOM OF MY HEART.March 29, 2006 at 12:03 pm #12446Zan LIMember
Jaggyone: I can feel your pain because i am now facing the same maybe even worse situation than yours. My mum was diagnosed with AML-M5 last July. After several months of chemo treatment,doctors “noticed” that my mum’s disease may progress from rare type of leukemia “CMML”.From then on, she is getting worse and worse even though she wants so strongly to be cured and spend more days with us. But she can’t stop the aggressive progress. My other family members have already well prepared for letting her go. But i just can’t let her go from my hear although i know i probably will lose her at any moment. So everything I could do is to make each day with her count and don’t think of the numbers of days that she can survive. When the sun rises, our hearts should be full of joy because we get another extra day from God. I wish my experience can help you a little. But your husband’s case might be different from my mum. I mean there is still large possiblity for him to recover if he fights it bravely and cooperate with chemo. My mum never quits treatment but treatments quited her.March 29, 2006 at 1:26 pm #12447sarahMember
I too feel your pain and have been there. My heart goes out to you, I will keep you both in my thoughts and prayers. One day at a time.
SarahMarch 29, 2006 at 4:21 pm #12448EnsneeMember
jaggyone, I’m so sorry your husband and you are going through this very difficult journey. My husband died recently from complications of chemo for AML which had transformed from CMML a year ago. He was to have an SCT (his brother was a perfect match,) but they could not get him into a durable remission. We found out 3 days before Christmas that he had no chance of the SCT, and about a month later he started having a lot more difficulties, though he was not as ill as your husband is. I just want you to know that I understand the terrible despair you are going through, knowing he will probably not get better.
Zan Li, you and your mom and family are included in my prayers for zaggyone & her husband. My husband never gave up, either, though he did know that his fight was going to get the better of him. The bravery of everyone with this horrible disease is amazing to me.
EsmeApril 5, 2006 at 4:30 pm #12449Sandy LMember
I am so sorry for what you are going through. I will continue to hope and pray that something wonderful will happen. Please continue to post and know that there are many of us here that are pulling for you.April 12, 2006 at 10:14 am #12450Member
I am sorry to hear of this and I hope that your husband is feeling better now.
Since my sister is considering transplant, I have one question for you: Did the doctor tell you the reason of the relapse? Is it due to the blast is not killed to 0% level during the transplant or because of the HLA matching is not perfect?
I will pray for you and your husband.April 17, 2006 at 8:33 am #12451CARMember
I reread your post today. April is a tough month for me, especially Easter. My father died of lung cancer easter day. My Mother just died of Lukemia after having MDS for a short time and my father-in-law died in April. We just learned my husband has MDS though it is low risk MDS-RA with low blasts, only low red blood cells and no chromosomal abnormalities. It still scares me and after 32 years of marriage it’s unbearable to think that I might lose him at such a young age. We also just got hit with another diagnosis of COPD whcih is chronic, progressive and often fatal. So we are just learning how to cope with diseases that are chronic and life threatening. I didn’t think I would have to face this in my 50’s, but I guess it is never easy no matter the age.
Your sharing is brave and honest. It must be so difficult right now for both of you. I hope you can feel the prayers and love directed your way.
ChrisApril 17, 2006 at 3:53 pm #12452LuAnnMember
Sorry I did not reply sooner but I’ve been thinking about what to say to help you thru this difficult time. Life is challenging enough without illness but when we add in dealing with MDS it sometimes seems unbearable and overwhelming. I’m the caregiver for my parents and have personally faced 2 life threatening illnesses myself. What gets me thru the difficult days is my faith. I know that God has put me right where I am supposed to be and will give me the strength to deal with whatever comes along. It’s not easy but I find strength in that. My dad is going thru a difficult time with MDS now and knowing this is where we are meant to be helps me be strong for him. Don’t know if this helps but I hope you can find some peace in this. My prayers are with you and your husband.
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