Radiation recovery
Comments
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Big D-been off the boards for a while now, just read your post of July 1. Needless to say, My angel is en route and gathering up all her buddies along the way. I've given her a one way ticket, so she can stay quite a while. Will be offering prayers for you in the form of a novena to Saint Jude--patron saint of those in need. Remember Luke 11:9-10)0 -
Big D, we are anxious to hear from you. We have all learned to multi-task our emotions and are here for you. Yes we are reeling from the shock of losing Kate/Joyce, But whatever you need from us is available. You & your well being is important to us as well. Can u tell I'm thinking of you today?
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BigD - 3rd the comments above...we do want to know how your appointment went. We are here for you...{{{squeeze}}}
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BigD---chiming in here to agree with everyone....we do want to hear about your appt. and blood tests. We want to help any way we can. And listening we certainly can do! Now, if you're off pampering yourself at the day spa, costs be damned, that's an excellent plan and in that case, you don't have to report in until this evening.
Love, Mother Hen
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I have no words as the only thing pouring out is tears. I must be naïve because I really thought she was there and getting better, in my mind she was. I was always hoping to see her post and let us all know she was okay.
The heartache hits hard. Damn this fricken disease, just not fair!
((hugs to all of you))
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Back at you lemon (())
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Joan - We are all reeling from the news about Kate even though we hoped for the best but were braced for the worst. Still we know you are dealing with medical issues that won't wait. Keep us posted. One way or another we are all in this together.
Diane
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You all are the best, have I told you that?? I have been thinking about our Kate. It was just such a shock but I am glad we had people in here who could track her whereabouts down so that we could contact her and tell her how much we cared. And I appreciate your words to me. I am doing okay, not in any pain or anything. The blood results on Thursday were not good. Calcium was up to 11.3 BUN up as well. The most important part of a special chemistry that was run on me was something called an M-Spike. Your M-Spike should ALWAYS be at zero. Any increase in it, even a .1, is abnormal. Mine was .2. It is an indicator of Multiple Myeloma. I had a long talk with my wonderful MO. He offered me the option of the biopsy with radiation to the forehead. He felt he could get the biopsy done without fear of hitting the brain, and then radiate the tumor, which is now pressing on my brain he says. But he said the radiation would leave a dent in my forehead.
I am not a vain person in the least, but he said this is my face we are talking about. He said most people choose to have the tumor removed. Although it will cost more money and put me in the hospital, my gut is telling me to get it out. What do you all think? I would be interested to hear your opinions on this. I am pretty sure at this point that we are dealing with MM, and both the neurosurgeon and my MO are feeling the same way. My MO said I should probably go ahead and have a bone marrow biopsy done while I am in the hospital so we can get it staged. But will definitely wait until we have the path report back. I guess that makes sense. I am not looking forward to having one but certainly they are done often enough. My MO is going on vacation week after next and he said he wants to be there for me after the surgery but I should go ahead and schedule the surgery even if it is during this vacation. I am still thinking that over. I have not heard anything yet from my neuro's office, so I hope they call by Monday or I will be calling them.
I am scared and worried about what it is to happen next, but I am pretty sure this is in an early stage and hopefully available treatments will keep me going for a long time. You know I will not give up the fight. My body may not be treating me very well right now, but sh** happens and you just have to do the best you can until you can no longer fight. None of us will live forever, but when you are faced with your own mortality, you start to really appreciate each day more than before and the people who mean a lot to you, as all of you do.
I have been in an online virtual world since 2009 called Second Life. It is not, as many people think, a virtual game. It is a world just like the one we are in, but it is virtual. You meet and make friends from all over the world, and you can decide what you want to do in there. I decided to try my hand at modeling, something that I could never be in RL but I have always had a love of fashion. I worked for many hours, many months just to learn how to function in SL and learn how to shape my avatar, find the right skin, work on every facet of the face and body, go to modeling schools, enter modeling competitions, including the biggest one of them all, Miss Virtual World. I represented Ireland and lost, but made some amazing life long friends in there, just a few. One is in Venezuela, one in Panama, one in Las Vegas. Those three people are family to me. I have been unable to be in SL much since my diagnosis, as it takes time to style and practice for runway shows, and although I used to teach, that, too, has been too time consuming for me to pursue. But those people have been in my pockets as well, and we Skype and they have let me know that they will never leave me.
The thing that drew me to SL was the fact that you can actually make money in there. I know it sounds crazy but the creators of SL created a currency there called Linden Dollars, and when you make a lot of them (hard to do, but trust me, people have made millions designing and making things to purchase, just like in our world here), you are able to convert them to U.S. Dollars. There are people who make a living in SL, but I am not one. Models make very little money, but they have a heck of a lot of fun! The more you make friends and get to know designers, the more free stuff you wind up getting. I have another dear friend in there who lives in Paris and actually works for one of the major fashion houses there. He understands English better than speaking it, but we have been "room mates" for several years now. I live on his land and he never makes me pay rent, he uses me as a model, and I write copy for his releases. I have been unable to do that as well, but plan on trying to get back in there and spend some time. I really miss it.
So I wanted to share a little video of my avatar's photos. Someone put this together for me and I chose the song "Reach" by Gloria Estefan -- one of my favorites. I just love the message of it. And that is what I am going to do, to reach -- to hope -- and not to give up no matter how rough it gets. I know of no other way to take this journey and finding this little thread and you ladies here just makes my soul soar. I am a supermodel in Second Life, but she is just an alter ego, one that I love dearly, but in the end, all that matters are the friends and the love.
And I love each of you.
And her name is Carilynn OHare - my avatar in SL. Enjoy and please enjoy the rest of your weekend!!
Much love,
Big D/Joan
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Big D! That is simply mezmerizing, Absolutely beautiful. Who knew we had such talent among us. WOW. You do good girl!!
I'm so sorry to hear your news. Sounds like you have a good team & they have a plan in place. Myself. I think I would go with the surgery.
Just know we are here for you, always wear big pocket clothes for appointments etc as it can get quite crowded at times. Big hugs ((((())))).
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Big D, Thank you for sharing your video, she is beautiful. I enjoyed watching it, took me away for a few minutes.
Since you are asking what we would do in your situation I will give you what I would do. There would be no doubt I would have it removed. I think you all know from my DX and TX I don't mess around. Rule #1 always follow your gut, I did for good reason. I also think if you were to do the rads and then later remove it you would have had to go though more than having the surgery. I am in no way telling you what to do, its just what I would do personally. I told you my mom had brain surgery and is 72 and is doing great. In this day and age we are blessed with such wonderful medical technology. Only you can decide what is right for your body. I hope you can come to a decision in your heart you know is right. I am also sorry you even have to be making more choices. I only wish the best for you. xo
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Joan I am a real naturalist when it comes to medical care. However, if I were in your shoes, I would get the tumor removed. I would want them to get it out of there ASAP. If it is already pressing on your brain, it seems to be growing pretty rapidly. Just my opinion.
SL is intriguing! I will take a look. Glad you have found some good friends.
Lemon, hugs to you, dear.
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Joan/BigD. I tried doing a bit of research on multiple myeloma just to gain some insight into your possible disease. I do see that radiation is used if a tumor made up of these myeloma cells. I gather that other treatments are the general course of action though. So...in conjunction with my medical team, I'd follow their advice but probably personally lean toward surgical removal of the tumor. Just my personal preference. I'd rather save radiation as a last resort if necessary. I don't envy you the job of making your decision about treatment, and either option is good. In the long run, you must do what you feel is right for you.
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Ladies, I have been away on vacation without wifi to read BCO on my ipad ... I'm back home now and am catching up. I am numb and very sad to hear of our sweet Kate's passing. I seem to recall her mentioning that her son was going to visit her in CA this summer. I hope that her family was able to be with her at the end. The thought of her alone and frightened breaks my heart. I know she was proud and strong and might not have wanted anyone to see her. But I hope she was able to receive comfort from those who knew and loved her.
BigD, I'm so sorry you're dealing with this. I agree with others that I'd opt for removing the tumor. Big hugs to you.
You are all in my thoughts! All the best to everyone.
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To my sisters here, when one of us hurts, it seems we all hurt...
I did not expect to hear from Kate/Joyce again...but it is so sad and hurtful that she had to go through so much and leave this world too soon. Her entire journey is chronicled on this thread...when I first met her, her biggest concern was just being done with her reconstruction. It failed, and had to be postponed due to infection. Along the way, she developed her second cancer, which overwhelmed her already stressed body. Through it all, she showed strength and dignity. I will miss you, Kate.3rdtimenow, I don't have the experience you are looking for. I hope you find some answers to your questions here or on another thread. Please keep in touch and let us know how you are doing. We are always here to listen and share our thoughts with you. Sending hugs, prayers and positive thoughts your way.
BigD/Joan, I cannot weigh in - I just don't know enough. It is a tough burden you are carrying. I remember that feeling when I was dx'd with BC...all the helpful information as wonderful; but when it came to surgery/treatment, I realized that only I could do it for myself. That said, you will never be alone. There's someone here (like us night owls) for you so stay close. Follow your heart and I think you will know what decision gives you the most peace.
Janis, I never get tired of hearing about your celebration. You know I just love Colorado and will want the play-by-play of your trip. And then that special birthday party after the family gathering...what fun! After a tough year(s), you deserve it all.
Bunkie, I am glad to hear you focusing on reclaiming your life. I hope that having your friend come to stay will lighten your spirit and your workload!
Josie, that's strange that your trainee has gone back to her desk....were they checking on how well you know your job...or (hard to believe) training her just in case....in any even, try to focus on what you have to do and not on what may or may not happen. Keep looking for that better opportunity.
We had a rainout on the 4th (rain bands from hurricane Arthur meets line of thunderstorms over NY/Long Island)...so we had a Happy 5th. I had 4 grandkids at the beach today and just loved it all. Fabulous fireworks in our village tonight...kids leave tomorrow (sigh).
Fireworks aside, what a sky show tonight with a quarter moon and Mars sitting right above...hurricane took all the haze and humidity away so huge numbers of stars are visible.
July is mammo and MO month. My MO left the cancer center...will have a fill-in...doesn't matter.
Vacation ... Monday... first day with no plans...
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BigD/Joan, if I understand correctly, surgery will remove the entire tumor and a metal plate will leave your forehead looking just as before, with rads an option later on, if necessary. Biopsy plus radiation will leave you with a dent in your forehead, with future rads rather problematic. is that right? To me, it sure sounds like surgery is the way I'd go. It is certainly a bummer that you have another cancer to deal with, but thank goodness for today's tests and treatments! As Joan811 says, you are not alone. Between the night owls and the early birds(that's mostly me, I think), someone is here. You make an awesome stylist and model, you fashionista, you.
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BigD/Joan i have to agree with Brookside. If it were me, I would save the radiation for the future if needed. They have some amazing surgical techniques these days, and also imaging! Hope you are doing okay. I remember during diagnosis and treatment, I began to cherish the normal moments in my life. When things felt out of my control, I found comfort in doing the things we always take for granted, and my entire focus went there. It helped me to cope.
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Big D/Joan, I'm so sorry about your diagnosis, as you may or may not know.My dear FIL has multiple myeloma.He had a tumor( which is really an overgrowth of cells) on his spine area.They were able to shrink it first with radiation, then gave him Chemo. He was in remission until just recently.His protein levels in his urine kept getting higher and that's how they knew it was back.He is now eligible for a stem cell transplant.He is back on chemo which is given twice a week every 3 weeks I think.He will start the really strong chemo in Sept after his stem cells are harvested.They will keep him for 3 weeks in the hospital.They usually harvest enough stem cells for 2 transplant s.Because it is not uncommon for them to have to do this twice6 months apart.The chemo is so strong in order to kill all his bone marrow cells or plasma cells.It makes you very ill but after about 3-4 weeks at home you get feeling better.A friend of his went through it and said he couldn't eat or had no appetite for quite a while and lost a lot of weight.Remember ever one is different.This doesn't necessarily mean it will be your course of treatment.
I am not telling you this to scare you but prepare you if you do choose or have to have that treatment.I hope they are able to remove the tumor first.I would do that if I were you.Please forgive me if this was totally inappropriate or out of line to go into such detail.I should of maybe only saved that for if you asked.But can always delete it if necessary.
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BigD/Joan, so sorry you are dealing with this lousy hand in the card game of life since you already have been dealt this crap. With that being said, I would definitely choose the surgery if it were me. If you are early in the MM stages, this may be the entire cure, at least for a good length of time. What could be better than that? I am still hoping that your numbers are wonky for another reason and that MM is not your ultimate diagnosis and that can still happen. The ONLY way to know is when it is in the dish as they say. Huge hugs and know we are here no matter what you decide to do. It is most definitely your decision only and whatever you and your doctors decide is the way you should go. We love ya chica and we know just how strong a person you are! xoxo
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Gemini, so good to see you. Big smile when I saw your name. Hope you enjoyed your vacation. ((hugs))
Big D, I hope you are able to relax and get though the weekend, we are all here for you.
April I am so sorry you keep having to deal with someone loss lately. Reminds me how blessed we all are.
Cindy same to you, hope your DH is doing well.
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Thanks, everyone, for your opinions and information. And no, Josie, I am not the least bit offended. I know about the stem cell transplant and if and when I would have to deal with something like that, well, we will just have to see. I am fairly confident that this is in early stage, but we will not know anything until it is removed. And I am glad you all thought surgery is the best course of action, because in my mind, it is too. Josie, I am sorry that you FIL is going through this terrible disease, and I hope that he will do well and have many more years of life. I know that when they kill all of your plasma, you must feel close to death, but each person has to decide whether or not the risk is worth it. I would probably go for it, if I had to make that choice.
Ladies, you are near and dear to me. I am okay. I cry sometimes, but I have been going back into my Second Life and enjoying that a bit and I have kept a little busy and tonight I will watch Big Brother and get a laugh -- why I love reality TV, I do not know but ever since Survivor started all those years ago, I just love certain of the reality shows.
I will let you all know how my blood work goes on Tuesday. I have had NO DAIRY and it has been hard, but have been drinking a lot of water and eating fruit and veggies. Tonight will make some chicken and steam some broccoli and maybe some mashed potatoes with no butter
Thank you for being here for me. And yes, Redheaded, need that Angel of yours badddddddddddddddd!!
Love and hugs to you all,
Big D/Joan
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Do not stand at my grave and weep,
I am not there, I do not sleep.
I am a thousand winds that blow.
I am the diamond glint on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you wake in the morning hush,
I am the swift, uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and weep.
I am not there, I do not sleep.
Do not stand at my grave and cry.
I am not there, I did not die!Mary Frye (1932)
"Ha'makom yenahem etkhem betokh she'ar avelei Tziyonvi'Yerushalayim"
Comfort to all who are mourning our Kate.
Susan
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Thanks Susan
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That was perfect, thank you Susan.
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beautiful Susan.....thanks.
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SAB, thanks that poem was beautiful.Very touching and sounds like it would have been written by "kate" herself if I didnt know better.
Gemini , how was your vacation?Big D/Joan, Thanks for keeping us informed.And thanks for letting me know if I was giving you too much info on MM.I just wasnt sure if It was the right thing to do or not.Thanks for letting me know how sorry you are about my FIL.He is a special man that would give you his last dime, even if he didnt know you.He has worked hard all of his adult life to support his family.Sometimes or most times 7 days a week.You just never know what cards are going to be dealed to you.We should live everyday like its your last.We hope he is able to go through this treatment and it buys him more time.I dont know what would happen if we lost him.I have been praying for you daily.
We had a quiet 4th of July.My husband has been working since Tuesday night.He brings the tow truck home and runs calls from the house when he can.We came over for the parade to his parents house and swam afterwards.and then we set off our own fireworks at the tow yard after dinner and you can see the local display just yards from us too.It was nice.Sat my youngest DD wanted to go bowling.So I convinced my hubby to come with the tow truck and bowl with us.Well he did and we had the best time.Andy bowled so good and really enjoyed it.What a great family memory.My family had given us gift certificates for the local bowling alley when they found out Andy enjoyed that at Christmas and we never had used them.The games were only $1.50 each and $3 for shoe rental.Only 1 other person was bowling so they actually gave us 2 lanes for the price of 1.So the kids could use the bumper.I bowled a 99 one game and 102 the next.Andy bowled like a 78 which wasnt bad for him.My mother turned 79 yrs old today and we had a big birthday celebration at their house.It was fun .Too bad hubby couldnt come .Too busy.He has been busy all day.Oh and I and forgot to tell you.Claire got a cell phone last night.Thank God we worked as a team DH and I and she didnt get the contract phone she wanted but a go phone.Its still really nice and she can work her way up to a contract phone.It was still $99 but that s better than $600 for a 11 yr old child.
Sorry so long.
Josie
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Thank You SAB ...just what Kate would say...beautiful
BigD - you will know what is right for you...rads is a serious consideration...your pockets are full...wow, what a fashion model:)
Josie - wise move with cell phone for Clair...fun time bowling...strike!
I'm wresting with flying home just hours after Zometa infusion on Friday...will I really be that sick?...or asking to switch to tamoxifen ...my MO was so adamant on tami and uterine cancer...strokes...decided to not take my pill for a few days...with micromets not really an option so I'm making my flow charts...and flipping a coins:(
(((Hugs)))
Cindy
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Cindy, smart move to go off meds prior to flying.Not sure of the side effects of Aromasin but I know tamoxifen can cause blood clots. .
How long of a flight Is it?
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Cindy, I don't know about zometa infusion, but the Prolia ones given to me we're like nothing. Sit for 5 minutes after the infusion which only took a couple of minutes and all done. No effect at all. I think they're both the same class of drug? Good luck with yours.
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Thanks Josie. It's 1 hour flight with time on ground than 3 flight and a 1 shuttle drive home. Up to the bone scan Aromasin has been a none event, but bone loss and elevated cholesterol makes me wondering. MO was opposed to tamoxifen strokes on both sides
Thanks Sew. Good to new know:). Zometa is a 45 min drip and MO said I would feel like flu for 3-5 days
but oral pill would be heart burn reflux daily...grrOk going to keep flipping the coin...
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Cindy are you not a candidate for Prolia?
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