Can we have a forum for "older" people with bc?
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We need quiet time to examine our lives openly and honestly -
spending quiet time alone gives your mind an opportunity
to renew itself and create order.
- Susan Taylor0 -
Anne, you are right. When it rains, it pours. Hope this is the last of the thunderstorms you've had in your family.
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Mike has an appointment at M.D. Anderson in Houston on July 25th. We were hoping to get there this week but the scheduler made a mistake. They called us Tuesday morning, gave us the name of the doctor who will handle his case and said they would call back with the date. We were glued to Mike's cell phone all that day and Wednesday but heard nothing. Yesterday morning while Mike was getting his twice a week lab work, M.D. Anderson called and wanted to know why Mike was late for his appointment! We live several hundred miles away! They never called although the woman claims she did and left a message on his cell phone. There was no record of an incoming call or missed call and no message. We were crushed! Our doctor said it would be ok...a few days wouldn't matter, but the next appointment wasn't for 11 more days. That's an eternity when you are dealing with aggressive Acute Myeloid Leukemia. It was so upsetting, especially since we didn't know if the whole thing would be in vain anyway since he might not qualify for any clinical trial. In that case, our hospital was ready to start him on rescue chemo.
I'm happy to say that our doctor here called the doctor at M.D. Anderson and was told that Mike is very likely to be accepted, so when we go to Houston, we are taking enough to last a month rather than a few days. Mike will have to have new tests and another bone marrow biopsy first, then after a day or two of paperwork and approvals, be admitted.
Since we are going out of the military medicine network, the cost is going to be huge. His retiree military insurance, Tricare, will pay for some and Medicare will pay for some, but we will be left with a significant percentage. If they can save Mike, it will all be worth it. If he dies during the treatment, they are going to have to wait a very long time for payment.
Our social worker is trying to find us a place to stay but the few available places for patient families have long waiting lists.
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Sandra, Do you know anyone with a motor home who would loan it to you? My cousin had her BC treated at MD Anderson. They drove their motor home down from Tulsa and stayed at a park a little ways south of the medical center.
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Sandra: I feel sure MDA has given you the info about the group of fully furnished apartments that are owned by various churches - but just in case... It's a great deal for MDA patients. Even if there's no opening today, I'd recommend you get on the list. Snippet below if the link doesn't work
http://www.churchapartmentministry.org/apartment/h...
Apply by telephone by calling the CAM Telephone Volunteer Office at 713-524-2640. Volunteers available in the office Monday through Thursday between 9:30 a.m. - 12:00 p.m. and 1:00 p.m. - 3:30 p.m.
You may apply at other times by leaving a voice message. Please speak slowly and spell your name. A volunteer will call you during regular hours.0 -
"I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do."
-- Edward Everett Hale0 -
When we put people before possessions in our hearts, we are sowing seeds of enduring satisfaction.
Beverly LaHaye
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Just a quick update on my SIL. She was released from the hospital yesterday, but needs to go back to the Dr Tues for blood work. Their best guess right now is that she was taking too much Advil and hat is what caused the bleeding. Since they told my brother he would go home when she got out of the hospital, don't know how he reacted when she went to see him yesterday, because Norren has agreed to stay with hr daughter till she gets her strength back, and isn't sure she will ever be able to bring a Bill home because she knows she cannot take care f him 24/7 without help. He is ok with hospice staff bathing him etc, but will not allow anyone but Noreen to help him at home. I think a nurse comes by every other day to check his vitals, and an aide for a couple of hours each day, but other than that, Noreen is on her own. Her daughter helps every way she can, in fact the poor girl was running to her Mom at the hospital and her Dad at Hospice, trying to be with them both for each meal. They are not very good a accepting help, and since my sister and cousin have both offered many times, all they've been able to do so far is visit and bring lunch once. So I don't see the sense in me rushing up just to be just another person there. We will see how it goes.
Anne
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Anne, My Mom and Dad were like that about accepting help. One day a friend came over and asked Dad if he could borrow his lawn mower. Dad said sure. A little later he looked out the window and the friend was mowing Dad's lawn. If he'd asked if he could mow the lawn, the answer would have been no. Someone really understood my Dad.
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Anne, I've also talked with others and let them know that by allowing people to do something it makes THEM feel better. I know it's hard; we all think it's imposing on others or we feel guilty, but even now, I'm trying to be better about letting others help as I realize it makes them feel like they are doing something in a situation where they really have no control.
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So in agreement with the previous posts. It is hard to watch others be responsible for those things you always have been. You feel in a strange way like a total slacker, even though you know illness has caused it. Wren -- your dad's "friend" was perfect in how he took care of things. It really is GOOD karma when we can pay back by paying forward --- and it brings a sense of comfort to the person who can lift burdens from friends and loved ones.
Jackie
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Hi to all my oldies friends. I have been reading posts every few days and thinking responses. This morning I am taking time to slow down and relax after days of hurrying off to the nursing home to visit with my mother.
I arrived at New Orleans airport on Tuesday and have been "camping" in our house. No cable TV. Empty refrigerator and freezer. I rolled up the hurricane shutters on some of the windows so it isn't like living in a cave. There's an Anytime Fitness gym nearby so I have gone there a couple of times. Our YMCA membership is on hold for the summer and we use the AF gym in Park Rapid, MN. My sister Linda asked me on the phone last night how it felt to be home. I told her this doesn't feel like home with dh not here and my life not involved with usual activities like playing golf.
I am accomplishing my purpose of giving my youngest sister a break from being daily caregiver to my mother as she makes the difficult adjustment to living in a nursing home. Yesterday I took my mother to church where she got many hugs that she much enjoyed. Then we went to my mother's house and had lunch with some family members. There were seven of us. Unfortunate the subject of politics came up and I felt alienated as though I live in a different reality. That's all I will say about politics.
My mother is doing well and enjoys the social aspect of the nursing home.
Dh is keeping busy and we communicate often. On the 26th I will be catching a plane back to MN.
Blessings to everyone.
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People can learn to study their life force in the same way that a master gardener studies a rosebush. No gardener ever made a rose. When its needs are met a rosebush will make roses. Gardeners collaborate and provide conditions which favor this outcome. And as anyone who has ever pruned a rosebush knows, life flows through every rosebush in a slightly different way. -Rachel Naomi Remen
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Carole, once you get back to MN we'll have to make plans to get together, either here in Fargo or meeting at Detroit Lakes again.
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The whole idea of compassion is based on a keen awareness of the interdependence of all these living beings, which are all part of one another, and all involved in one another.
Thomas Merton0 -
I got my cardiac echo results back, heart function is normal. Guess I'm just getting old and need to slow down and rest more.
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Puffin, isn't it so hard to admit that? In my head I'm still around 42! My mind just hasn't caught up with my body yet :-) At least it's always nice to be told you're normal!
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Glad your heart is behaving, Puffin. It's always a worry when we go in for those check ups, no matter what it is for. Just occurred to me that I haven't followed up with my surgeon in a long time...way over a year. I was supposed to see him at least once a year but have been so wrapped up in Mike, I forgot.
Good idea about the RV, Wren. I have a friend with a 5th wheel but they hardly ever use it. I might need to figure out how to tow one behind Mike's truck. Can't count on Mike being strong enough.
Minus, I took your advice and got on the waiting list for the church apartments. A VERY nice lady helped me over the phone. Every day I'm calling more places and getting on their waiting lists. Something will turn up...or I'll call my friend about the RV.
People do love to help. You are right, it makes us feel better to help someone else. A friend brought us dinner the other night. It's not like I'm laid up and can't cook, but we had such a busy day, it was wonderful to know that a nice hot meal was waiting. Another friend who lives in Chicago is a big shot with lots of travel miles due to business. She surprised us by making a reservation for the Hampton Inn Medical Center for 6 nights - her treat. What a load off my mind! It's only a mile and a half away from M. D. Anderson Cancer Center and they have a shuttle service so we don't have to worry about paying for parking downtown every day. We are going to Houston this Sunday so we can be sure to be on time at the hospital Monday morning at 7:30 a.m. Mike has three appointments that day and will continue for the next few days with more tests. By the end of the week the doctor will check all the reports and make his recommendation. Mike may be admitted right away or we might be given the weekend off before being admitted the next week. The doctor also could tell us that Mike doesn't qualify for any trial in which case, we'll be heading back to San Antonio. Mike will go into our hospital for about a month so they can "throw the kitchen sink" at him to try to keep him going. We'll cross that bridge when we come to it.
My son Ryan was doing pretty good but has had another bad suicidal depression episode. He called me Monday while I was at our hospital with Mike while he got a blood transfusion. Ryan wanted me to come home and take him to the psych hospital. What a dilemma! I had to keep Ryan on the phone while I calmed him down and convinced him to take a nap until we got home. By the time he woke up, he was feeling better, sober, and decided to wait until today. He's been asleep all day so I may need to take him tonight. I hate it that he'll be an inpatient while we are gone. The detox takes about 5 days. Neither of my daughters can afford to come right now so I'll find a friend to go get Ryan once he gets released. I feel awful. I should be here to support him and make sure he gets back for outpatient therapy each day. BUT, I have to be in Houston with Mike.
I've been frantically trying to get all my ducks in a row but a friend suggested I settle for getting all my ducks in the same pond and worry about what order they are in later.
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Oh my Sandra, I just can't believe what you have on your plate right now. I'm sending prayers and good thoughts to help support you and your whole family! Hugs to you all. Dara
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Sandra - if you haven't yet, see about getting on the list for the Rotary House. You have to be an MDA patient but it's lovely, w/piano music in the lobby every afternoon and a covered, overhead walkway to the hospital so you can do a wheel chair from your room to the hospital. I know it's hard to get reservations, but you could walk over there one day when Mike is having tests.
My cousin did stay at that Hampton Inn with her daughter last year and said it was fine. I've stayed at the Wyndham Medical Center and they too have a shuttle.
Sorry to hear about Ryan. Maybe it's better if he stays in the psych hospital for an extra week while you determine the plan for Mike? That way you'll know he's safe.
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Lots of hugs and prayers. Standing with your soul and you.
Jackie
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If civilization is to survive, we must cultivate the science of human relationships -- the ability of all peoples, of all kinds, to live together, in the world at peace.
Franklin D. Roosevelt
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Minus, I looked into Rotary House. It looks wonderful BUT it is $120-$130 a night. We can't afford that, especially for a month! It is a good rate compared to the rest of the hotels in the area though. I talked to the social worker assigned to us and she gave me a couple more names of places to call that have small apartments are are geared to people staying a minimum of 2 weeks, maximum 2-3 months. They run $32-$52 a night. Of course there is a long waiting list but at least we are on the list.
The sadness is getting pretty overwhelming but I'm hanging on most of the time. This morning at our hospital I had an opportunity to speak to his doctor. He said there is no point telling Mike how bad things are. He said if Mike gives up completely, it could shorten his life even further. The doctor said even if M.D. Anderson gets him into remission, we're looking at a few months at best.
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Sandra, I'm speechless. I'm glad Mike's Dr. was candid with you. Anyone can hope and pray for a really big miracle -- they are not un-heard of, but at least you have solid preparation in case the miracle is not supposed to be. I think you are very level-headed and likely in your heart you could sense that the path has many difficulties. We are with you here, every minute full of hope, care, and prayers for needed strength.
Jackie
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Sandra, I too am so sorry for what you both are having to go through. Loving thoughts sent to you. It's so unfair that on top of everything else you also have to worry about living arrangements. I hope something turns up that will work!
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Sandra - I'll be out of town this weekend but please feel free to call if I can do anything next week. Even if it's just kidnapping you for a quick lunch while Mike is having tests.
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Sending strength to you, Sandra. I like what your friend said about getting all your ducks in the same pond. Sending prayers that your son gets the help he needs and MD Anderson can offer hope/treatment.
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oops just realized I've posted in the over 60 forum... I'll be 54 soon but have an older (or is it tired) soul. Sorry to barge in.
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Love My Family -- please don't apologize. You are welcome here anytime. After all we are all in the same boat and you are sending love and care to someone in need. We are all too old ( or maybe too young ) for this disease and so are our mates and other family. It is only by banding together that we keep pushing hard to help our friends along the road adding not only sympathy and understanding, but lots of strength and prayers for healing and soothing energies too. Come when you wish and share and care with us.
Blessings
Jackie
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I keep the telephone of my mind open to peace, harmony, health, love and abundance.Then, whenever doubts, anxiety, or fear try to call me, they keep getting a busy signal—and soon they'll forget my number. -Edith Armstrong
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