Radiation recovery
Comments
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Joan, Cole is doing pretty well for the most part. He has learned to transfer himself, which is such a help to my daughter. He was afraid to do that when the fracture was new. He is growing so fast, and lifting him is getting pretty difficult. The one thing that has happened however is that the elevated leg has basically frozen that way and the bent leg has frozen that way, so now PT is having to work out the strictures. That is not easy to do. They worried that he would never be able to walk and stand again. That is not a good thought because that will affect his ability to breath and will cause curvature of his spine. Just to refresh your memory, he has SMA which is a form of muscular dystrophy. He was able to walk and run as a baby but has steadily been losing the muscles in his lower limbs. He is a type III and that type of SMA has a pretty good prognosis. He can live a normal lifespan, but unless they find a cure, he will be in a wheelchair probably from now on, since the fracture. Before the fracture he was able to motivate around with a walker. He fell using the walker however, which caused the fracture in the first place. It has been a tough one dealing with this, because it has clinched the fact that he is going to be in a wheelchair from now on. He has a stander that once they loosen up his knees, he will be able to be strapped into. He kind of loves that because he can reach things and look at everyone eye to eye at school, at least for a couple of hours a day. He has grown to an inch shy of 5 feet this summer. That means he is only 3 inches shorter than me. He is only 10 (almost 11). I think he is going to be a tall guy. They are working on clinical trials for gene therapy that could mean a cure for this awful disease. It strikes 1 in 40 children either as a carrier in the active disease manifestation. It takes two carriers to have a child with SMA. That is probably more than you wanted to know, but one thing led to another.
Dad is having another transfusion today. WE always worry when he has to have those, and it is getting more frequently. However, I have added turmeric to his smoothies, and we were able to add an extra week between his transfusions this time. Turmeric is really a wonder spice. It relieves pain as well, and I use it in my smoothies for fibromyalgia and cancer prevention. Studies have been very positive in its cancer preventative qualities.
Just another thing talking about healthy foods, I made the most wonderful porridge this past weekend. I put wild rice and steel cut oats into the crockpot overnight with the right amounts of water, along with dried cranberries. In the morning I added frozen blueberries, sliced almonds, and toasted diced filberts. I sweetened it a bit with pure maple syrup and served it with half and half cream. It was amazing!! I am going to make up a pot tonight to heat up for breakfast for a few days in a row. My husband has been home for 10 days on vacation. He is back to work now, so it is me on my own. Dad is in his own apartment right now, with my other sister looking after him. We take turns. I have two sisters and sometimes we are all around to pitch in. We do have our tensions when we all have something to do at the same time, but we seem to work it out - usually with me giving up my plans. I am not complaining, because I know time with Dad is precious.
It is a rainy day here in Minnesota. I am hoping to go south for part of the winter. It all depends on Dad, right now.
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Your family really has gone through a lot this year, Gigil, and I know it cannot have been easy for any of you. I hope Cole enjoys the attention he gets from PT, both from the therapist, and his at-home program. Was he not exercising the leg that is bent, or is that just one more issue with his condition? I sure hope he can progress to the stander in record time.
Sending hugs and prayers.
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Hi new2bc thanks for the hint about melatonin. I am going to give that a try. From what I have read, not all oncologists are willing to even look at the estrogen aspect of our situation. There are independent labs who will sell you the test, tell you where to go to have the blood draw and send you the results. You can then take those results to your doctor. The new Suzanne Somers book has a link to one of those labs. I have found a couple of doctors here in the Minneapolis that work with natural hormones and I am sure will be willing to test my estrogen/progesterone situation. I could so use some vaginal estradiole, which is a safe form of topical estrogen. I think it would help my vaginal prolapse situation, but I want to be absolutely sure it will be safe for me. Our goal as survivors is not to give any bc a chance to grow via estrogen. Supposedly estradiole is cancer preventative, and keeps other hormones in check. Having had bc has been such an eye opening experience. It makes one realize how much there still is to learn, and that there is research both for and against everything you look into. It is mind boggling.
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Brookside, can you believe that his current PT and everyone involved with his care just overlooked that bent leg?? It only gained notice when they were doing a yearly recheck on Cole and laid him out on a table to measure his height, and the leg would not straighten all of the way. His PT felt terrible. His ortho is still not aware of it. He lives 5 hours from them, and they have to drive to see him. He specializes in SMA patients and he is way too busy.
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Holy crow, Gigil! I'd have imagined he would have whole body range of motion and strength training and all of that, even before his accident. Is he upset?
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Brookside, he takes everything so much in stride. He is amazing that way. My daughter was upset both at herself and the situation. They were so concerned with the fractured leg and protecting it, they completely forgot the other leg, and the healing was very slow which kept postponing weight bearing. At least now PT has figured out what they should be doing, instead of overworking those leg muscles when it is impossible to built muscle there. I always felt they were missing the point. It is such a fine balance between working those muscles enough, but not overworking them, which only speeds up the deterioration. They always seemed to have the goal of building muscle, which to me was a huge disconnect.
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Kate, are you sure you'll have 35 days of rads? That's the protocol for bc, but I think it's not so much for other areas.
GiGil, thinking of cole and your dad, and how lucky both are to have you in their lives. I wish I could have done all the kind things you do for your dad for my mom. Give cole a big hug from me.0 -
Thank you Susannah. It is so interesting in regard to my dad. My mom was always the talker in the family. When she passed, Dad started talking and communicating more than he had in many, many years. As of late, he is talking a lot about the past and what he is going through now. He is teaching me a lot about life and the process of dying. It is a beautiful process in so many ways, which is a comfort to me.
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That's so nice to hear GiGil, and interesting how your dad changed, along with your relationship.
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Just catching up. I have been in a slump and just now starting to read the posts. My stomach has not been cooperating and I am loosing more weight. My gastro suspects a problem with processing fats after GB surgery. That can cause weight loss because of mild malnutrition. So you can est just fine but the body does not handle it right. Oh joy. Can not wait for this scope Wednesday. Scared because when I go under I always am but need to get it done. I am still dealing with the steroid withdrawal and it looks like I may have Secondary Addison's. If so I will be on some form of steroid the rest of my life. More to come when I find out. I am staying at 4.5 till someone tells me I have to go up but I feel like a tired old dish rag.
Kate - you have a lot to decided on here and I can understand about not wanting rads if that is how you feel. That blockage has to be a real painful situation. Hopefully they will find out what is causing it and you can get some relief. I am so sorry about your friend.
Sab - How is the job going? I will probably read the next page and know but curious.
Joan - I always wanted to go to Taos NM. I spent every vacation in Santa Fe for about 5 years and was going there the year they had the big fires. Back in 98 I think so I did not make it. That area is just beautiful I find and miss my trips out there. I still have a ton of artwork I display in my home from there.
Gigil - Glad your dad is with you and doing better. It is hard to see them go down some but at leat you can be there for him. As much as I dislike this old house and Mi sometimes I will never regret coming back home to be with my parents.
RunFree - Finally a biopsy!! I still can not see it being fleas but what do I know. It just feels like a reation to something but what??????
Cindy - What are you doing the accupunture for? I can not remember. Glad your hubby is acting better. They are so stuborn.
Josie - What a scare for you with your son. At least it was fixable and tghe Er could help. I get dehydrated also. Not sure why. Ever since rads it seems. I have been to the ER for fluids several times in the last couple of years.
Brookside - I am spinning again. My dr said the reason the PT for vertigo does not work is because I do not give it enough time. I beg to differ. 3 straight weeks of nausea and spinning was enough for me. If they want to make me that sick they can admit me.
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Bunkie, so sorry you're having all these icky issues. As to the vertigo, your doctor may, of course, be correct about the PT. In my case, as you already know, it took months of keeping my head more or less still before I could begin to do normal activities without vertigo. I still never indulge in repetitive head movements, such as PT would entail. And I doubt anyone else does, in normal activity, so why would I want to train my inner ear to handle that anyway?
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Ah Bunkie...:(
So sorry that you are feeling so lousy and can't seem to get a break. Will keep fingers & toes crossed for your scan and scope...no more spinning! Yeah, hanging in there with steroid levels...you're doing so good:)
Accupanture is for LE...it has reduced the pain, heaviness, and along with PT the 3rd girl is shrinking. Encouraged...OPT said arm looks good for a paddle ...so 10/12 will hit the lake with my gaggle of yaks:))) taking a tow line just in case I get winded...My spirit would like a 3 hour paddle, but my arms were tired after 5 minutes on the PT's bike...
TGIF! Happy Dance!!! Shout to all:)
(((Hugs)))
Cindy0 -
Gigil, I will pray for Cole.That poor little guy.Bless his heart.I'm glad your sister had a turn with your Father.Everyone should share the stress and responsibilities.
BUNKIE, do you for sure have Addison' s? I hope not for your sake.We actually had a dog with Addisons.When she got stressed she would go into a crisis and need steroids to treat her Shock/Addisons crisis.We medicated her for as long as we could and st the time I was working at a vet clinic so that helped with the cost.Eventually we just couldn't afford to keep medicating her.I know that's terrible but true.I only met 1 person with Addisons.I wish you the best of luck sweetie.Sounds like you have a good doctor.
Cindy hope you get to go for that paddle.
I kind of woke up on the wrong side of the bed this morning.I had woke up early 4:55 with a charliehorse and then had a hard time getting back to sleep so when the alarm went off at 6:30am I just wanted to turn it off.As my hubby laid there and dosed off .I was resentful of the fact that he never has to get up early.I know he works way more hours than I do but really can't I just sleep in just once.
Andy had a psychologist appt today.That went pretty well.He was nervous but did just fine.I was a little out of my comfort zone too because the office shared space or the office was in a in patient treatment facility.I'm not sure why but that just kind of freaked me out a little.0 -
Josie, I totally understand your stress about being in a treatment facility. It is not a good vibe. And I am sure it doesn't feel great to see a doc there. Very institutional! Do you get to sleep in on the weekend at all? I hope you can and do. One more day of work, I hope?
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Gigil, Cindy, and Joan thanks for your support. Gigil I am opposed to radiation of my pelvic area for many reasons. Cindy I don't think pt will do anything for my partial blockage. I am hoping that the GI doctor I see Oct 14 can figure out what is causing it. I see my MO tomorrow. We are not going to make a decision about radiation or surgery till after I see the GI doctor. I am so much praying he will just agree to the surgery. I am actually feeling a little better right now. My abdomen is not as hard and distended as it has been.
My doctor friend is finally back from her vacations, and I look forward to going out to dinner with her on Sunday. It seems like so much happened while she was gone. Have a great weekend everyone.
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So glad your friend is back, Kate. That was a long trip and she'll have such wonderful escapades to share. After all that Chinese food, she'll sure be looking forward to that margarita!
It sounds as though you are focusing on all the good aspects of surgery and the bad aspects of radiation (I'd be doing the same, by the way), but if some of your docs are kind of negative on surgery, and kind of positive on rads, maybe there wouldn't be any harm in wrapping that princess warrior coat all around you and asking your doc today for some of the reasons they might be thinking that way?
RunFree, hoping your biopsy comes back with nice, clear, innocuous, answers.
Josie, maybe next time you have a chat with your managers, Kate might loan you her princess warrior coat. And a bludgeon!
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Kate - Glad your friend is back. It really helps to have someone to do things with. That is what I miss here. You will have a lot of catching up to do.
Josie - Yup that is the same Addison's. I would have Secondary Addison's caused by use of steroid drugs too long. It wipes out your adrenal glands because it actually replaces them. So they have a drug that will shut down your immune system and your adrenals. Somehow they discovered it does well for anything that has inflammation in the body. Prednisone is a fast acting drug and can be used for what It was intended for. They are using it too much for arthritis, autoimmune disease like mine and lupus. That 5mg a day is called a maintenance dose but what it does is control the disease AND wipe out the adrenals. So if I can get a true test and I indeed have it I will be on some form of steroid for life. It would be really hard for a dog to be on it. My moms dog was on it for arthritis and when we took him off he could no longer walk. It destroyed his bones.
Cindy- Thanks for the shout out. I am really fighting a loosing battle I think but not ready to throw in the towel.
Brookside - I am doing that steady head thing right now. I have another headache right now so it is hard to remember not to turn my head. I do not agree with the Dr about that PT. I have done it 4 times now.
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Kate, I can certainly understand your hesitation about radiation. I know I would feel the same way. However, if it is the best way to shrink that tumor and something that will be more long lasting and effective without putting you at risk for infection or something unforeseen in regard to the surgery, it might be worth some thought. My father had radiation to his pelvic area when he was about your age. He is now 85 and just now seeing the effects of that radiation. His bone marrow has been affected, but it took this long for it to be a problem. It prolonged his life at least 25 years. At times like this it is good to put both things on a sheet of paper, divide the columns label one benefits and the other risks. Do that for both surgery and radiation. I have learned that process from my husband, who is a very logical man. It may be a way to evaluate this. Maybe take those sheets with you to your doctor's appointment and have them fill them out for you? In the end, it is your body and the decision is yours. Right now you just need all of the facts to work with, right? I'm glad your friend is back and you can look forward to a night out with her.
Bunkie, you are actually doing your very best with the hand you have been dealt. I admire you for that. You just keep trying to maintain, and some days seem to be better than others. I wish I lived closer to you so we could go to some movies together and cook red beans and rice!! I am home alone for a few days. I cooked my breakfast porridge so I would have a good start to each day. I just love it.
What is everyone doing this weekend? I have a feeling I will make a drive down to see my dad. He has been with me two weekends in a row, but I know how much I have the ability to cheer him up, and he deserves that right now. He lives 40 miles from me, through the heart of the city. That on a Friday is a real project. We have threats of severe weather as well, so I might have to wait until morning. I am waiting for the proper time to pass after my meal to be able to do gigong. I am having some troubles with chronic pain and I need to get my exercise program going again. I am working on that! When one is in pain, the last thing you want to do is exercise. My neck, shoulders and tailbone have been chronic pain sites for years. Fibromyalgia is probably the diagnosis. I have never brought it up to a doctor, because I don't want pain meds. I have always just used home remedies like heat, ice and exercise. I go periods of time with no pain. If I eat too much sugar or white flour, it seems to flare up again. I have been pretty good lately, so I suspect I need a new mattress!! Add to that the fact that I have NOT been exercising as much as I need to. Writing this points me in the direction I need to go, right? xoxo0 -
Brookside, Bunkie, and Gigil thank you for the support. I just came home from my appointment with my MO, and I am happy about what he had to say. He said right now we should do neither surgery or radiation. He said I will only need to do it if I have symptoms, and thank God I am not having any. He does want me to just go ahead, and talk to my radiation oncologist, so if I needed to do radiation later on I would know what it would be like. He also wants me to make an appointment with my original oncologist for a follow up. I told him I needed a rest from Dr. appointments and medical procedures, and he agrees. Besides those two doctors I need to see the Gi specialist Oct. 14, Then I don't see my MO till Nov. 15. I think I will at least have from Nov. 15 to the first of the year without any medical appointments. Then right after the first I will have to do CT scans again.0 -
Kate, that is such great news! What a great thing to hear, and on a Friday no less! You really do deserve a break. It sounds as though you really made a lot of progress with your chemo, tough warrior princess! Now you can have fun with your friend and maybe have some retail therapy, or donut therapy. (I ALWAYS think about your donut shop!) And just try to feel normal for a little while, and wear your pretty wig if you need it, and do your nails, and drink margaritas, and do everything fun that you feel like doing. Hooray!!!!
GiGiL how tough to have undiagnosed fibromyalgia that you just have to manage. I think it's great that you're going to see your dad. I am going to copy your oatmeal, maybe not tomorrow but very soon. I adore that whole category of food, and I want to use my slow cooker more. Mine is really large, like 6 quarts--is that too big? How big is yours? It seems weird to think I might want another one, but a lot of recipes seem to call for smaller ones.
There are several other posts I was going to respond to, but I'm running out of steam. I'm thinking about all of you lovely people for sure.0 -
Run, I use the smaller crockpot for this, one cup of steel cut oats, one half cup of wild rice, 5 1/2 cups of water. I throw in a couple of handfuls of dried cranberries. I cook that on low all night. In the morning I stir in maple syrup to taste, some frozen blueberries ( but next time I will try frozen cherries) chopped or sliced nuts- any kind you like. I have mine with coconut milk. It is so good. I had some for breakfast and more for lunch.
Kate so glad you get a break right now. I agree enjoy the heck out of the weekend! Do just as you please. Forget about medical stuff for a bit. You deserve some fun!0 -
Gigi, your porridge has everything I love! And I have a new (small) crock pot...will try it soon.
What a nice thought to visit your Dad even when it isn't your turn...I heard you could get snow with the severe weather patterns. Are you ready?
So sad to hear that Cole may be reaching a difficult crossroads. He is a big guy for 10. I hope that he can find creative ways for mobility- there are technological advances for disabilities. I hope he regains flexibility and motion in his good leg. Cole is a person that everyone should learn something from...but how difficult it is for you to watch him struggle with the disease.
I know your plans are uncertain...maybe you will get away for awhile.
Bunkie, I keep thinking a change of scenery and someplace warm would do you good. Are you getting outside at all? Please don't give up...believe in the power of your body to heal the parts that can mend.
Kate, I hope you do get to go out and enjoy some fun times. You deserve it. You must have had enough medical appointments for a long time. well, I am up in the middle of the night but the good news is that I have no week end plans for a change and I plan to lie in bed and read for an hour or so when I wake up.
DH is going fishing and I will probably get my clothes in order (put away summer) and clean up a bit. Did some retail therapy today...a new bag for work (I carry a lot of stuff); and some new sunglasses. And a starbucks treat.
Hugs to all...
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Joan--hope you're still in bed as I write this at 7 am!--what kind of bag did you get for work? I carry a lot of stuff too, and I have to be careful of my back. I'm about to be in the market for a new one. I can get deeply into this quest, which I mostly do online.0 -
Run, I got this bag at the outlets...50% off outlet price and a nice person gave me a 25% off coupon (Breast Cancer fund raiser) plus I had a return
-- it comes in 2 sizes and I got the big one. It is very light weight leather and about 16" x 5" at the bottom. Drawback? no divider inside, 2 pockets and zipper pocket. But outer pocket is great for phone etc. And optional cross-body strap is great.0 -
gil and Joan thanks so much for the support. Joan I love your new bag. My friend and I are going to try a restaurant we've never been to before in Marina Del Rey called "Killer Shrimp". I am so much looking forward to it.
Bunkie I hope you are feeling well today.0 -
The first part of my post got deleted. it was supposed to read Runfree, Gigil and Joan0 -
Kate - that sounds like a great plan. You deserve a fun night out. I hope you are feeling well today.
Did anyone else notice the "new" icons? They are no longer in color. The photo link now allows us to browse and upload our photos directly from our computers instead of uploading them to a website first. You can also select "link" for posting a web photo.
I just tried it - no luck - a large file did not upload and a small file did not either.
Let me know if anyone has success. It would be so easy.
PS - I do not see emoticons either...is my page different? Maybe this is still in a trial mode.0 -
Joan, thanks for the picture! I would definitely need the cross-body strap. I like LOTS of pockets and usually a flap. Light weight is important because it will certainly get full of heavy stuff fast! No divider inside would make me hesitate too, but it does look like a good one and it's great that you got such a deal too! On leather even! You're right--the icons are different, not in color, and it does seem as though some options are gone. Wonder why?
Kate I'm so glad you're going to Killer Shrimp. What a great name for a restaurant! I hope you have a lovely time.0 -
Joan I just tried to upload a photo and I couldn't either0 -
Joan love your new bag! Kate Killer Shrimp might do that to me. I am a little allergic to it. Have fun ! I'm sure you will enjoy the outing. Run I got a great brown leather purse with a cross body strap at TJ Maxx. I am with you. Gotta have the cross body strap.0
