Can we have a forum for "older" people with bc?
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Less than 22 hours from now we meet with Mike's hematologist to learn his myelodysplastic syndrome staging and therefore, how much longer he has to live and depending on the stage, what the next 1-5 years will be like. The last 6 days have been devoted to studying, with a dictionary in my lap to get through some of the technical info. I have my notebook ready, just like I did after my own diagnosis, with dividers, a glossary, and sections for questions. Once I have researched something, it makes me feel more secure to have the information written down and organized. (The retired accountant in me is showing.) Last night I couldn't sleep. It's just like it was before all of my surgeries. I can't turn off the nerves and the endless loops of "what ifs." Even though I know this is ultimately a terminal illness, I am clinging to the hope that he will be in the low category and therefore likely to have another five years. I felt sure of it until this weekend when he most acute symptoms were back and he couldn't get up without becoming so lightheaded he had to sit back down. He says he can feel himself slipping back down close to where he was when he collapsed nearly three weeks ago. I got him some Ensure Plus, which he likes, so he's getting some nutrition. Can't get him to eat more than a small child-size portion of anything. He seems quite depressed and resigned, which is 180 degrees different than last week when we got the news. Perhaps it because he feels worse and knows, therefore, that his hemoglobin is down to critical levels in spite of the blood transfusion. We took him in for a blood draw yesterday and his hematologist will have the results tomorrow. I know from my studying that needing more than 2 units of blood in a month is not a good sign so I'm scared to death.
Once I get the staging and know which chromosomes have mutated, his path will be clear. The literature spells it out but does allow for temporary remissions before the inevitable acute myeloid leukemia takes hold. We will, of course, hope for treatment that will give him a remission. I haven't cried one tear and haven't shown my fear to him, I don't think. I asked him if it bothered him to have me discuss the disease but he said on the contrary, it was comforting to know I had that part of it covered. He didn't have to think about the details because he knew I would be. I don't talk of it much with him, mainly because there's not much news that's good and I see no point in discussion what COULD be until we know the staging.
Know what's harder than waiting for your breast cancer treatment? Waiting to find out how much longer your husband has to live.
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Sandra, my heart goes out to you, sending prayers for you, your hubby and his doctors.
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Sandra- my heart goes out to you. I learned when my oldest daughter gave birth to her first child that it is so much harder watching someone you love in pain than it is to be in pain yourself. And that lesson was confirmed over and over as I watched my husband slowly die from complications of Agent Orange. And I so clearly remember when someone (a doctor, but we had never met her) talked to him on the phone in his hospital room. He just kept saying un- huh, yeah, ok, but very quiet and subdued, then he asked her to repeat it all to me. Bottom line was there was no longer any options for him and he was going to die soon. I was shocked, scared, but most of all totally unable to help him. After that, we were told over and over if he didn't feel well, not to try to get to the VA hospital, to call 911- there would not be enough time to get to the VA. We saw a cardiologist after that, again a one time deal, (not unusual with the VA) and he said he had gone thru all of Bobs records and condensed them into what he felt was critical for any medical person in an emergency. He said we needed to keep it on us at all times. The "condensed" version was 28 pages long! My daughter took it to work, scanned it in to her computer than transferred it to 3 Zip drives- we each put one on our key ring so we would each have a copy.
So I know some of what you are feeling. Just like with your Dx, try not to focus on worst case scenarios. Take it one day and one step at a time. And know, always, that all of us are praying for both of you and sending lots of gentle hugs. And we are always here to listen.
Anne
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Everyone's heart is aching for you Sandra. As Anne mentioned -- we take bad news, pain, upsets of all kinds, and jut mow right over the top of them. As women, we just do because we 'generally' take the brunt of our family and our whole extended families illnesses and issues, while the Dh's are happy ( not really so much of the time knowing exactly how ) to take the lead and take care of all the other things while we do -- relying on our mothering/soothing instincts to make things right.
We have done it for so long for ourselves, for others -- but when it is our life mate -- the one who 'chose' us over all others, the one who has meant everything -- it is all different. We don't feel so competent -- we wish we weren't actually. Now we need someone to come along and make it better for us -- but likely it isn't even possible. I would not want to be brave, and strong -- but you will because it is what is needed for now. So, just know that all of your friends here are hoping and praying and lifting you up as high as we can so you can lift Dh up and help him traverse what comes. Some things were never in our hands. Sending large hugs, many, many positive soothing vibes that the path will not be rocky before you and that you will be able to find the way for yourself and your Dh. Sending you love and care.
Jackie
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Sandra - echoing what everyone else send. Prayers & hugs. Just a thought about nutrition, Nestle Health Care makes a product called BeneProtein - an instant protein powder. It has no taste & you can mix it w/anything and it dissolves immediately. I took it through chemo or I would have melted away. I have 3 cans (8oz - 32 servings each) from a new order that a friend's husband took when he had no stomach. I'd be happy to mail them if you think that would be useful down the road. You can mix w/Ensure, coffee, oatmeal, applesauce, etc. I know it's not a high priority but keep it in the back of your mind.
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Sandra, you will be in my thoughts tomorrow
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Sandra, what a nightmare and it all seems to have happened quickly. I am so hoping for a better dx than you're expecting. We will all be keeping both of you in our thoughts.
Anne, your story about your husband was heart wrenching. You do understand what Sandra is experiencing.
I went to the podiatrist today and was relieved to learn that the foot pain I've been experiencing is a common ailment, caused by inflammation. It may hang around for months. The dr. recommended several brands of athletic shoes that are, no doubt, expensive and he wants me to buy two pairs and alternate them. Tomorrow dh and I will go to the athletic shoe store that sells the shoes.
The forecast is for a hard freeze here tomorrow night, low in the 20's. My mother will have to run a slow stream of water in her bathroom and kitchen. Her house is raised on blocks and her pipes aren't heavily insulated. Our house is on a slab and we don't run water except in the kitchen sink when the temp. gets down in the teens. DH protects all the outside faucets and turns on lights to keep the pump from freezing.
Today was a pretty day, sunny and not cold. I had the chance to play golf with some of my golfing buddies but I didn't want to cancel the apptment with the podiatrist.
Rita, enjoy that FL weather!
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sandra you and Mike are always in my thoughts I can't imagine how hard it is trying to take care of yourself and keep your head together to be positive for mike. I am sure that he is so grateful that he has you but please take care of yourself make sure you're eating and taking your medication. We are here for you as much as we possibly can be which we wish we lived closer. Please let us know how everything goes and if there's anything we could do. I myself and a half empty kind of person. Try not to think negative thoughts only positive one step at a time baby steps.
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Sandra, Wear something with big pockets because we will all be with you tomorrow. Hope the news is better than you fear. Hugs for you and Mike. Try to get a little sleep.
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We are with you Sandra.... I just can't imagine. You are doing the very best you know how.... It's like you just don't want Mike to know how really afraid you are... and all of us would do the same. I think you are too numb to cry.... just keep your mind busy... and know that you are strong, for him.
I'm just SURE we will all hear some good news...! Maybe they found this in the early stages, and maybe everything is treatable. Got my fingers crossed.... and thinking of you guys.....
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Honor your being,
Release each and every struggle,
Gather strength from life's storms,
Relax into the arms of spirit.
- Jonathan Lockwood Huie0 -
Sandra, Prayers from Fort Davis, TX
DH went to broom shop today. I got up a 6 and made him an egg mcmuffin and then he took DGD to school. I am going to attempt to work around the house, we will have an adoption home study again at some point. Weather here is to turn nasty later today, high wind and a 20% chance of snow tonight. At least we are not getting the bitter cold. In 1989 we went to Iowa for Christmas and by the time we got to Des Moines at 12 PM the wind chill was 70 below. We could barely stay warm in the car. In early Feb. 2011 we had wind chill of 18 below here, a whole lot of people had their septic systems freeze. We were one of the lucky ones.
Well I had better get with it. Hugs to all
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Teka
The nail is on the head.
Jackie
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Sandra - My husband and my best wishes and thoughts are with you and Mike. We hope for the very best news from his hematologist.
Yesterday they scoped me top to bottom and found no bleeding, so still have no idea why I'm anemic. Tomorrow we visit the hematologist to see what next steps she wants to see. I'm still on blood thinner shots for the pulmonary embolisms of early December, they haven't yet moved me to Coumadin/warfarin as the shots have a very short half-life, so they can continue to do testing easily without worrying about excessive bleeding. The doctor yesterday suggested that they next do a camera endoscopy. For that you swallow a horse pill sized camera that takes pictures as it travels through your small intestine and wirelessly sends them to a monitor you wear.
In the meantime, hubby has scheduled us for a cruise to Mexico, so I'm looking forward to some warmth (unless the docs nix the trip
MoJim - to start a new topic, go to the menu at the upper left of this page. Select all topics, Then select the major subject you'd like to post in, then select the minor subject. On the top of that page is a button that says something to the effect of "start new topic". Press that button. From that point on I can't remember the exact sequence, but as I recall it wasn't too difficult to suss out.
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GG, My friend did the camera thing. Unfortunately it's the same prep. Warming up in Mexico sounds wonderful.
Sandra, Hope your news is good news. DH and I are keeping you both in our thoughts today.
Teka, You nailed it. Except that here we're having warm weather, huge rain, and flooding. One poor town has 200 people trapped when there were landslides and bridge problems. Nothing where I live, thank goodness.
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Well, it's 2 degrees with a -23 wind chill. Some gusts seem to make the house shake, and sucks the heat right out-even with brand new windows. Goin' nowhere today or tomorrow.
Sandra, I wish there were magical words that would relieve you of all this fear and anguish. We are all available so call on us whenever you need a shoulder..
Tam
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Dear Sandra, I am so sorry for what you and Mike are going through. I don't know what to say. But I do send you warm hugs and positive thoughts.
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Oh Sandra! You have such a heavy load riding on your shoulders right now. It is good that you are becoming educated about your hubby's disease but try to relax a bit as you await the informational appointment. I am praying that there will be a treatment that will control the problem. I'm also sending big hugs and calming vibes your way. Keep us updated because we all really care!
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The news is bad. So much worse than I was prepared for. The hematologist said he has 1.4 years to live. Of the four categories, I never dreamed he would be at the top.
The only cure for myelodysplastic anemia is a bone marrow transplant. Mike does qualify which is a blessing. Only a fraction of patients qualify because of their co-morbidities like diabetes, heart disease, high blood pressure, etc. Mike has none of those and as they said today, for someone with a terminal illness, he's pretty healthy! The doctor said it could happen within 3 months, perhaps sooner. We have to find a match first. He has a sister but hasn't spoken to her in years and while siblings tend to be the best match, in the end only 20% actually will match. He will go on the national transplant registry and the doctors are confident there will be a match. While it's good he qualifies for a transplant, only 50-60% of patients survive it so by trying for the only cure there is, we could be cutting his life expectancy to 3 or 4 months. It's a huge gamble but a big pay-off if it works.
We met with the bone marrow specialist also today and will have a longer appointment with him next week to go over all the details. The doctor will contact Mike's sister and brief her on getting tested. Our children will also be tested although they said it's unlikely one would be a match. Seems the national transplant registry is more likely to find a match since it has lots of Caucasians of European background. Tomorrow we head for the hospital for another blood transfusion since his hemoglobin has fallen to 7.9. He is scheduled to have a port placed next week to help with the blood draws although I'm not so sure that's a good idea. When he has the transplant, they will put a different kind of port which is larger on the other side of his chest anyway, so as long as his veins are holding up and we find a match soon, I'm thinking he should forget the port. He doesn't mind blood draws and says even the ones out of the back of his hand don't hurt.
I'm sure this is a dream. I'm not ready for what comes next.
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Dear Sandra, This news is staggering, but Mike is not a statistic. How many times have we read on these BCO boards where the experts gave a limiting prognosis and the patient is still kicking years later? His good health will sustain him until the marrow donor is found. Thank you for keeping us posted on such a traumatic day. I have been waiting all day to hear from you and I hear your pain. You and your family are in my thoughts and prayers.
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Sandra.... I know this just makes us all sick..... But all we can do now is hope for a call for the bone-marrow match transplant.... I think I would even call his Sister.... maybe without him knowing it? Then if she doesn't want to, at least he won't have to hear it.
You know, I don't even know what is involved when we give bone marrow.... but I'm sure it happens all the time, with no bad results.... it's just possibly saving someone's life!
I wish you could just go to sleep, and wake up, and it IS all just a dream....
Oh wait.... I just read where you said the DOCTOR will contact his Sister! Good! That is the best way! He can explain it all to her! She wouldn't DARE say no.... I would do this for MY Brother if I had to! But I know how families sometimes are not on speaking terms sometimes. But to save a life????
He has a shot at it anyway! And it sounds like you are still going ahead with "After the transplant......." thinking!!! That's good.... hold onto that thought Sandra! xoxoxoxoxo
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Donors now only have to give blood. They don't have to go through a procedure to have their bone marrow taken. The docs today said that the donor takes a growth factor that speeds up production of stem cells and tells the marrow to release them into the bloodstream. The donor gives the blood and it can be frozen and sent here so they don't even have to be present. Apparently it's better if it's "fresh" but not a deal breaker by any means.
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I've been away since Christmas and was suddenly drawn to this group tonight. After scanning all the pages about news from Sandra I now see I logged on at almost the exact moment you, dear Sandra, were updating us on Mike's health. And now I see that the news is hard to read and hard for Sandra and Mike. It is a tiny blessing that you have a safe place here to cry out or scream if you need to. It really is a wonderful thing to have friends here that you know cannot possibly betray your confidence. If there is anything we can do to help speak up. I can't imagine what that would be, but am a willing listener even in the middle of the night. You probably still have my cell # from our lovely lunch time in December.
There are some funny things in the previous pages, but it just doesn't seem the time to joke right now. Best to all.
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Awful news, Sandra. You and Mike must both be in a state of shock. Now we all have to concentrate our healing energies on the transplant. Hugs.
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Hugs for both of you. What a jolt that must have been. You're right about Caucasian having the best chance of finding a match. I signed up years ago because I don't have siblings. I hope his sister is a match and willing. Hope the transfusion ups his energy level and he feels better soon.
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Sandra - So sorry for this news. Sending more hugs for you and for Mike. And echoing that we're all here when you need us.
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Oh God, Sandra. I cannot tell you how sorry I am to hear this news. You are and will continue to be Mike's rock. Whenever you need support, we will be here for you.
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Good Morning Sandra... gals... The donors only have to give blood? Okay, let us know what that actually means... like if they DO have blood stored in a blood bank, or if his Sister will be there for him, or what type of blood he needs? Is that all it takes, is the right match for his blood?
I gave blood once when I worked for the phone company in 1956... I think any one of us would give our blood to help you out.... unless it's somcthing like 2 or 3 quarts... and mine is half Starbucks....so whatever works!
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Chevy - your remodel of the sweater really is "genius". Of course, talent played a big part. If I tried to do that I'm not sure it would have fit any better. I tried to sew a blouse one time and stitched together the wrong seams. Therefore the sleeve was coming directly out of the back. I did improve enough to sew things, but never anything beautiful. I was one of those people that would have the same outfit in many colors with and without collars.
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