Call from eldest 46 yr old son

Sending prayers and pvs!

Thanks deborahg.

My best friend's husband is now celebrating his 3rd "birthday" after undergoing a complete bone marrow-stem cell transplant. He was doing so well, they have held off on the repeat that was the new protocol. It was a rough year, but the outlook is great now. His doctors are are Hackensack Medical and supposedly the best in the state. Keep us informed. We're behind you!

Oh thanks musicmz. That is great news! My son assures me he has contacts through his wife of ALL of the best drs and procedures in the US. I believe him. He is in Brooklyn NY. My baby sister Clare has been emailing me information as well. This disease is much more hopeful for a successful outcome even as recent as 20 years ago. She swears he should see a nutritionalist. Just to have the nutrients to booster his immune system against cancer. Also an acupuncturist to keep his energy unblocked. I am going to wait to share this info until he calls me again. Tomorrow he gets his full body scan and he told my daughter he may start on chemo. It's hard with a large family to keep all of the info flowing between us. Yet my son is such a confident handler of drama that I have full confidence in his decision making and resource of all available possibilities. He is a Libra after all. The weigher of the scales. I will take his lead in how he best chooses to treat himself. Thanks again for such good hopeful news if he chooses bone marrow-stem cell transplant.

I think alternative medicine has its place, but that place is NOT in front of traditional medicine in a situation like this. I'm glad you aren't planning to push your sister's suggestions, because at this stage it would most likely be a distraction more than anything truly helpful. Perhaps later he might be interested in knowing about her ideas, when he has gone farther with whatever medical treatment he chooses and has had more time to process what's happening.

Hang in there. It sounds like he is getting good advice and is on the right track for a positive outcome.

Thanks Peggyc. Yeah, Clare is a bit of a flower child. With this sibling in particular, she just wants to fix things and make the pain and hurt go away. You and I know this isn't how life is. We have to take time to analyze the whole nature of what is going on. My son is this mature as well even though 5 years younger than she. There will be a time and place for her advice, just not now.

I understand that impulse and realize she is trying to be helpful. But I'm glad you are there to "manage the message."

oneofthegirls, I am glad your son has a strong mother and that you have a strong family supporting both of you. Good luck with the scan tomorrow, breathe deeply, let the sun warm you, and stay in the moment. The leaps and bounds being made with some cancers, such as this, are very heartening. And every story of survival is so important.

When I was dealing with my own health issues, I would feel strong when I remembered certain comments people made. One of them was a very quick remark told to me by the wife of a colon cancer survivor. She heard that one of my lymph nodes (out of 12) tested positive, and she said, 'One lymph node? She'll be fine.' And my PCP got annoyed with my dithering about whether I should do chemo because maybe, just maybe, that one lymph node wasn't really positive. He said, quite impatiently, 'Just do the chemo. Get it over with. You'll be fine.' Whenever I got worried, I would hear their dismissive or impatient voices saying, 'She'll be fine.'

So I say to you, if he does what the docs tell him to do, 'He'll be fine.' But treatment of course can be rough and with 4 kids under 12, the family may need the extra tender loving care that makes the difference. I benefited greatly from having friend visit, or send notes the old fashioned way, and my extended family gave us quite a few dinners. There was only one thing that I'd wish we'd had help with and that was cleaning. I was too tired from the chemo to do much, and really wished the house could be cleaner. Only vacuumed twice in 8 months because the vacuum was heavy. And I didn't tell anyone I needed help because I didn't want to be a baby or cause any more trouble than I already had. So I would just suggested asking the family what help they need and perhaps listing the things you (meaning extended family and friends) would be willing to do.

Sending good wishes for tomorrow.

LisaT, you couldn't be a baby, in that sense of the word, if you tried. You are one of the bravest women I know.

PeggyC, I don't think so, but I'm glad you think so!

If you aren't, you sure do "write" a good game.

I emailed her back that we are just all hurting from the shocking news that it will probably be days before I will share this with him.

It's surprising in a way that all of us siblings have the same experiences and yet at such different ages ranging a 20 year span. Baby Clare seems so detached and educationally focused; methodical. Other sisters are empathetic and supportive. I just got an email from darling sister Marilyn saying she has been praying all night not only for her beloved nephew Sean who she calls a teacher to her, but also for his wife and myself. My sister Karen and her husband are the same, with all of the support from their little church where we have been out in Orient Point. Beautiful wonderful paster and people. The older siblings seem to take care of souls first. Baby Clare still doesn't seem to have that empathetic gene the rest of us inherited. Maybe being the 11th child of us made a difference. I don't know.

Oh Lisat, you are a darling to share those care taking stories. My son's family has a darling nanny that has been taking care of the kids and house for the last 5 years. It is always spotless when I get there and the kids love her as well. We think of her as part of the family. Although this news must be distressing her as well, she loves Sean. I'll keep an ear out to see if she might need some support as well as the rest of the family. Thanks for making me realize sometimes the care taker needs care taking.

hoping for positive news, always PV's out to you AND your family. Chin up, stay strong.

Thank you Wolfy. Always knew you were in my corner. Such strange news from a least expected place. For all of us. Sean is the most health conscious, physically active and happiest person I know and always has been. Why his life has to be knocked down to his knees, none of us can figure out and it pains us so. Especially at such a young age. Well anyways, we and hundreds of others are rooting for him. If anyone can beat this, he can.

While Sean is younger than most multiple myeloma patients, the fact that he is in such terrific physical shape bodes very well for him. Add in the fact that it was caught very early, and his prognosis improves even more. Great strides have been made in treating MM, with a wide variety of treatments available and more clinical trials going on, like this one:
http://www.clinicaltrials.gov/ct2/show/NCT01850524?term=MLN9708&rank=10

My best wishes are with you, and with him.

It always amazes me how tragic illness can strike anyone, even people who are "doing everything right." It doesn't make sense, which makes it even more difficult to bear and impossible to understand. But I am greatly encouraged by the strides that have been made in treating MM, and I am pulling for the best possible outcome for Sean.

Since the devastating loss of our son, 49, a few weeks ago from a heart attack, we struggle with the fact that there was no warning or symptoms beforehand which might have saved his life.

OOTG, your son has an excellent chance to beat this -- with so much support from his close, loving family, along with medical science. God bless.

Thanks meta, Peggyc and im80 for your words of wisdom. We will hopefully see his success.

IM80--so sorry for your tragic loss.

Not sure if prayers work, OOTG, but they cannot hurt, so I will pray for your son and hope for a speedy and full recovery. He is young enough and caught this early enough that his prospects for recovery are good.

IM80, there are no words. I am so sorry.

OOTG- I will keep Sean in my thoughts. I am so sorry to hear of his news.

While I am sure there are some connections to poor eating, exercise, etc-it seems that maybe they aren't as highly connected as we'd like to believe. And that just sucks when you live your life trying to do the right thing. Sometimes life just isn't fair.

mfpark said:

IM80--so sorry for your tragic loss.

Not sure if prayers work, OOTG, but they cannot hurt, so I will pray for your son and hope for a speedy and full recovery. He is young enough and caught this early enough that his prospects for recovery are good.

Thanks mfpark. My feeling is prayer works to help our souls deal with God's will. I am certain the medical, physical path he is on will do wonders for his body. My family and I rely on the support of prayer to keep drama at bay, emotions healthy and love flowing between us all as we experience this new to us experience. So thanks for your helpful prayers. It puts life in perspective for us. :X

I just prayed that my mother in heaven be at her first grand child's side to love and comfort him and offer her special comforting Irish wisdom of how to get through the tough times. As I was praying, I felt her smiling face in front of mine. "Uch, pay no attention." This is life. Some how I found that comforting. What will be will be.

conandrob240 said:

IM80, there are no words. I am so sorry.

OOTG- I will keep Sean in my thoughts. I am so sorry to hear of his news.

While I am sure there are some connections to poor eating, exercise, etc-it seems that maybe they aren't as highly connected as we'd like to believe. And that just sucks when you live your life trying to do the right thing. Sometimes life just isn't fair.

Yeah. In my prayers to my mom, she just told me that very same thing.

IM80 you have my deepest sympathy.

@IM80 - how awful for you! Sincere condolences.

@IM80 - your son was only a few years older than mine. You have my deepest sympathy as well.

Just got a text from my DIL. Sean starts chemo next Thursday. He will be here twice a week for three weeks then one week off to rest then three weeks again for chemo. This will last a few years. At present Sean will live with mm for the rest of his life. We pray they will find a cure before then. He is getting another bone marrow biopsy right now. He is in such amazing spirits.

DIL says he is amazing. I think she is too. :X

What does living with it entail at this point?

Well I imagine the chemo might be exhausting. It will drain some of his energy. Otherwise it's a normal life with his normal activities. I know with my brother bill it was at the end just being careful,of his brittle bones. One sis took brother out for some ice. Cream. She expected him to stay in the car and he was trying to get out. She accidentally shut the door on him and it broke his collar bone. Off to the hospital they went.