Can we have a forum for "older" people with bc?

Carol, glad you are resting and allowing the foot to heal! Keep reading the books and enjoy your leisure.

Jackie, how nice of those people to just give you those "goodies." It sounds like you got some real treasures. I love yard sales. My grandsons always want to go to them when they visit. I give them a few dollars to spend as they see fit and they are always excited about their "finds." I am especiallly happy when they add a book to their purchases!

Teacher...hoping the ct on your abdomen yields good results! I just hate it when I have to wait and wait for medical services. I know they are busy but that was why I thought you made appointments. My surgeon is very bad this way. You usually wait at least an hour if you are lucky. I have learned to take a book, plan the appointment on a day when I have nothing else to do, and grin and bear it!

Thinking of you mommarch and hoping that you have more good days than bad as you go through this again. Like you, I have been wondering about Sandra, too. Maybe she will post soon.

Hey, Chevy, my mom was a spit-bath queen, too.

Hope everyone is enjoying your weekend. It is too wet to golf today so I got most of my pots planted before the rain hit again. The rest of the day as been a rather lazy one. Guess I should think about what we are going to eat for dinner.

Hi all. I'm still here. My daughter Allison and I have been busy with lots of manual labor for the past couple of weeks. Doesn't leave much time for the computer. Mike's bad attitude continues to be difficult to live with. For the first time in our 45 year marriage, I let myself consider what life would be like if I moved to an apartment. The stress of his continuous negativity is more than I can handle. I stay busy all day and fall asleep exhausted from all the physical labor. That really helps me deal with the stress. I've decided to get a message to his oncologist and ask her to give him some anti-depression meds. I know I should be more patient and understanding. He's never been sick in his life before. His 50th high school reunion is coming up in late July in So. Bend, Indiana and he was so hoping he could go. Now he has lost interest and says he won't go. It's just the depression.

Mike continues to do much better than expected on chemo so it's possible he might make it another four or six months before it fails and he has to have the bone marrow transplant. Allison has been here 3.5 months now and is considering moving back home to Chicago and getting a temp job at Northwestern University where she worked until last January. She will come back when her father goes in for the transplant. There is still much to do in the house but the "clean room" is finished so both of us feel no urgent pressure to get everything else done right this minute anymore. Still, we work like beasts every day. We've taken a detour from the house-proper and cleaned out the garage as well as doing major improvements to the back yard and landscaping. I think it will do Allison good to go back and see some of her Chicago friends as well as have an opportunity to make a little money. Her kitties will stay here while she is gone since we don't know how long that will be and they've settled into life here with my three cats.

When Allison came Feb 3rd, we were still under the impression that Mike would have the transplant by April at the latest and we were panicked to create the clean room he will need for at least three months once he leaves the hospital. He'll be in isolation in the hospital for a month, then quarantined at home until at least day 100. The room could not have had a renovation done to it in the previous 3 months, so we were desperate to finish it ASAP.

A man we know, five years younger than Mike, died of acute myeloid leukemia a few days ago after a protracted battle. He was unable to find a bone marrow donor. This is what Mike's illness (melodysplastic syndrome or MDS) will turn into...he has the beginnings of it already, but the chemo is keeping the percentage of cancer cells in his bone marrow to a level he can still function with and is keeping his body from killing off his red blood cells, white blood cells, and platelets at the rate it was killing them in December and January. That's when things looked dire. He was progressing fast and we had not found a donor yet so chemo was tried in hopes of buying a few more months. We've had four excellent months now and have his donor's stem cells "on ice" so it's all worked out for the best. We want to delay the transplant as long as possible because it is so dangerous and is likely to kill him within the first couple of weeks or months. We have another friend that did well with her transplant at first but started having terrible rejection issues after the 100 day mark and is back and forth to the hospital all the time now. She's quite sick. The rejection is awful. It's called Graft vs. Host Disease and all patients get it to some degree at some point.

Life is on hold right now. I feel like a duck - calm on the surface but paddling like hell under the water. It can all change in a minute. When Mike's weekly labs show trouble - and we know that will happen since there is no cure and MDS always becomes acute myeloid leukemia, we'll have only the 7 days prep in the hospital before the transplant.

Chevy, now that brought back fond memories!

Sandra,

I'm in the line that says how wonderful to hear from you Sandra.  We feel concern ( though I do see you on Face Book ) when we don't hear from you much.  We don't dessert people in a time of need -- no matter whether it is them, their family, their good friends -- whatever it going on, we want to offer mental support and care.  I for one believe you are so right in seeking the possibility of an anti-depressant for Mike.  Maybe even something for yourself. 

You have all been through so much and it is hard to stay cheerful though negativity.  So easy ( the little voice inside WANTS to make you believe ) to give in, but it isn't you and in reality -- that is a huge reason why we are here.  To continue to strive always upward, even if we only gain the most minute momentum.  Though our NOW can be harsh and extremely difficult --- it is the whole time span ( race ) that will ultimately  tell if we have managed our difficulties with grace.  I know everyone here is mentally lifting you up. 

As for me -- well, rain is likely on the way.  I don't mind so much really.  It has been somewhat easier ( not totally ) this Spring.  It,I guess,seems more appropriate.  Also, each day ( though not as much as I'd like ) the sun has been out so I actually haven't been "deprived" near as much as many of our winter months this yr.  My light is available and ready to be turned on if I feel the slightest little downturn -- which means too much gray while waiting for the sun's return. 

Still so much enjoying  my free time away from Dh.  I'm sure he is having a really good time.  We are great opposites --- he just loves to go, period.  I, on the other hand usually feel more comfort in my well-known surroundings.  I think as well, always having had responsibilities,  some times going somewhere doesn't feel like something that would energize me.  I'm more of a -- just let me veg in front of my own t.v. with my own home-made snacks and call it even.  We manage.  I do insist that every other yr. is my yr. and we do day trips and things that don't take up so much time that I can't fulfill my obligations here.  It works -- not like most people, but it works.

Anyway, I'll be checking in from time to time after I get home from town today.  Hope you are all going to have a fantastic Sunday.

Blessings

Jackie.

Oh Sandra, I'm so glad to see your post and update. I had been really worried about you but can now understand why you weren't posting. Oh my gosh, gal! You have been busy! I can only imagine how stressed you must be and how hard it probably is to keep an upbeat tempo around your house. Hugs to you and to Mike, too, as you continue to work your way through this.

Good to hear from you Sandra.  Prayers for you and Mike & your daughter who is doing so much.  Yes, it certainly does sound like he is suffering from depression and there is no need.  There are good medications out there.  He may have to try several if the first one doesn't work, and it takes patience because they don't work instantly.  May take 3 weeks or so.  Someone who is truly depressed may be hesitant to see a doctor, but I encourage you to encourage him!  It would make a world of difference in both of your daily lives.  I admire you.  You are such a strong, strong person.

Paula

Oh, sweet friends. Your words are a healing balm.

Chevy I loved the link. There were a couple I didn't remember or maybe didn't understand (4 leaf clover or the paper behind it?) My mother used to give me Tonette perms for girls. In later years I had Spoolies instead of pincurls. I think they still make them. What fun to scroll through all the pictures. Thanks for the welcome distraction. To answer your question, Mike's only chance at life is a bone marrow transplant. His disease is 100% fatal. In January they gave him 1.4 years to live. The docs are watching him closely so at the first sign he is getting worse, he will go to into the hospital. The prep takes a week. He will be given heavy duty full body radiation and chemo drugs so strong that he will be taken to the brink of death. These two things are necessary to kill his damaged and cancerous bone marrow and immune system. None of it can be left behind. Some patients die at this point. He will be given a simple IV with his sister's stem cells. Then we wait. They will be giving him extraordinary medical supportive care until those stem cells create bone marrow and establish a fragile immune system, beginning to produce platelets, red, and white blood cells. It's an amazing process. Even the blood type changes to the donors blood type. For the rest of his life, a DNA test will show that he is a woman - his sister. The only thing that doesn't change is his fingerprints. We told his sister that as long as he wears gloves, he can get away with murder and SHE will be arrested. After about 2 weeks we should see the first signs of a healthy immune system.

Sandra, thinking and praying for both you and Mike to get thru this journey.

Mommarch, thinking and praying for you that all goes well

Carole, hope you are feeling better soon.

Cammi, Happy Belated Birthday

I started taking crocheting classes and cake decorating classes. They are fun and gets me out of the house besides for work.

Went shopping for yarn today and was going to look at another store when the lights went dim in the store and the wind really picked up so I came home instead. So far the storm has not hit here yet. It is hot and humid but a great breeze. DH went to his doctor this week he has picked up allergies and his hip has degenerative arthritis. Needs to see an orthopedic dr. next week, We have started to go through everything and get rid of what we have not worn or used in the last few years. Looking at different places to retire to if we ever get too.

I do not get to post everyday but I do check in and read often during the week. So Hi to everyone and hope you are enjoying a beautiful weekend.

Sandra: Thinking of you always. I do hope you're trying to do some things just for you. Even an hour here or there. You'll no doubt feel guilty, but hey, the care giver has to be in shape to do the care. MomMom and everyone else is right about the meds for depression, but you're dealing with a "m-a-n", and who knows what they'll accept. So maybe something for you?

Carole -- hope you are doing ok today.  I think ??  by now you have had your Dr.'s appt.  Hope it all went well and that pain - wise you are doing all right. 

Chevy -- lymphedema.  Well, I do know that if you get it can come at "odd" times.  Right away or never and anything or everything in-between.   I've got my fingers crossed since it has been almost a full eight yrs. for me.  Guess "real" compression stockings only last so long and then need replacement.  Sounds reasonable when you think about it.  Still, they are normally so tight and hard to get on --- it likely wouldn't have occurred to me that they had lost elasticity.  Glad you found the reason and the FIX.

Humid here today cooler tomorrow when Denny will get back home.  He is having a good time.  I've talked to him once ( this morning in fact ) and likely won't hear from him again until they are on the road tomorrow.  He will be back just in time to sort of take some of the pressure off from me as I will be feeding my friend's cats for three or four days while she is gone to Fla.  Will be nice to not have such a huge amt. of work then.  I also will be going to work taking care of my lady on Tues. and Thurs. 

Hope you are all doing fine.  Talk to you later.

Blessings

Jackie

The trip to the dr. this morning went well.  My foot was unwrapped and looks almost normal size.  Still a little swelling.  I have a compression sock on the foot and a new better-fitting sandal.  I am now able to put a little weight on the foot and hobble around but must still do a lot of sitting with the foot elevated.

I have another dr. appointment in two weeks.  At that time I should be able to begin wearing shoes. 

Thanks so much for the moral support.

Carole, your feet & ankles look great! I wish I had your pretty toe-nails....

Jackie, I think whether it is or isn't, the same cure works.... I just needed tighter stockings.... I ordered 3 pair from Amazon, and they just felt too tight, but I tried them again, and it feels just right.... Right now I have only one on....

Then to see in that article, what it said about Tamoxifen, plus me breaking my leg, just all attributed to the problem I think....

My Doc just kept dismissing my complaining about my leg every time I went for a physical.... And I wear them 24 hours a day.... doesn't seem to hurt anything.... Put lots of cream on them after showering, then the stockings.

Teacher.... glad someone has sun.... Ha! Got my tomatoes covered again.... cold rain, and low temps....

Chevy, I had a pedicure several weeks ago. I thought the foot dr. Would want the polish off but he didn't seem to care. I have trouble applying polish on my toe nails now so I have a pedicure. Lasts a couple of months if you don't wash your feet. LOL

Chevy and Carole, I always say the older you get , the farther away your feet are! I get a pedi too, too hard to reach myself. I now have nail fungus that hasn't grown out in 10 years, on my big toe, 2 crooked toe nails and a bunion, but I do enjoy nail polish on those little stinkers ans still wear sandals. Had a small bunion, since my tripping/fall it has grown bigger too! Knee is worse than before the fall. Ortho says it's all arthritis.

Have you trued the compression hose that zip, might be easier to put on. I rarely struggle into pantihose anymore. I tried compression hose since I had the PE in dec, but can't find them for short heavy bodies! end up having a tourniquet below my knees, figure that's not good for me, so gave up. They didn't find anything in my leg, My ankes swell when we travel. Dr gave me a diuretic to take when they do. Don't know why they swell either.

Chevy: Lots of good LE info on several BCO threads. Let me know if you want links. Below is the link that the gals here usually recommend. http://www.stepup-speakout.org/ Unfortunately most docs don't believe or don't understand or don't have any idea about the problem and they don't even like to give references for licensed PT for treatment or so you can learn how to do self-massage. The 'manual lymph drainage' techniques do help so push your doc for a referral. They seem more receptive if the cause of LE is diabetes and not surgery - I guess because everybody's figured out you can lose your legs. Glad you found some "socks" that work. I'm told that sleeves (so I guess stocking too) need to be replaced every 3-6 months depending on how much you wear them. Yes Wren is right, many of us have to wear compression 24 hours.

Carole - gorgeous toes. Hope the two weeks go quickly.

Saw my GYN for the last time today. Bittersweet visit since I'm happy for her that she's retiring to spend more time w/her 92 year old mother and her two grands, but I will sure miss her. She has been pretty much my only regular doc for 25 years. We always talked about the necessary med stuff, but also books & recipes & family. Since my MO retired last fall, I'm feeling deserted. It's hard to relate to new people at my age.