My Husband, My Life, My Love, My Family, My Cancer
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So sorry about your broken rib, Micmel, but glad it's not mets! You are one strong woman. Hope you heal quickly. Extra gentle hugs to you, my sweet friend.
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JKL,,I know right? I am sooo thankful for that for sure. I am going to bed soon. Didn't nap today which is rare for me. But I can honestly say that when I don't nap I feel better and more awake. So strange. I don't know how to continue this pattern. I am alway tired. I could sleep on command!My ear isn't behaving, but I got antibiotics and It's finally helping me! Thank you for caring. And being here. 😊💗 ~M~
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My name is Marian and i actually know Pots in person, from last weekend when a group of 12 BC/BC women met in Vancouver. Before I moved to Victoria one and a half years ago I had three potlucks in a row for those of us in British Columbia. I was so glad that a lovely woman in Vancouver organized our lunch. I plan to do a potluck in the spring or the fall in 2019 at the house of a friend in Vancouver.
I also know Runor just briefly from our BC site and I am pretty sure I recognize other names from the last six and a half years. I happened on the site and I immediately felt as though it was a good place for me and I hope that you will accept me into your warm and caring thread. My metastasis started during the summer of 2017. No, it showed up then but was probably a sleeper node from 2012. My tumour is entangled around the neurovascular bundle of my right brachial plexus. I have completely lost the use of my right hand and I am quite afraid at the moment but I've always been pretty strong.
I am wondering what the drink you talk about is pre-scans. I have never had anything like that and have had lots of scans including an MRI on Friday. Am I missing something special? LOL.
Marian
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Marian, of course you are more than welcome to be here with us and we are thrilled to have you. I am sorry about your mets. I know that is a hard pill to swallow. I also have a met located on my right plexus area and I have had a surgery prior to even knowing it was there. It is very painful and my right arm also looses function. You're not alone in this rodeo.... the drink we mentioned was the barium drink before CT contrast scans. It really tastes like hand lotion. Yuck! Welcome to our little family. Hope you'll stay a while. 🌷much love ~M~
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Marian welcome.
The drink is before CT and PET Scans. PET is thick lemonade and MRI has no drinks yay.
Tanya
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With all my CT scans I have always had IV contrast, same as bone scans and for my only PET at the beginning for a baseline it was IV contrast and no movement in a recliner with choice of music for 40 minutes for it to circulate. Am I missing something? I did do a barium swallow after rads when I complained of feeling like I was swallowing over a lump.
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Hi M.E., you will find here an intrepid band of the fiercest women you will ever meet. They live LARGE these people, they live hard and they bolster each other up as they do. This thread is like a warm, comfy bed with room for everyone. Now if only Micmel would stay awake long enough to make popcorn and hot cocoa for everyone it would be perfect but she keeps nodding off! We hope to see much more of you, MarianElizabeth.
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Tanya, you say it so well. I, too am full of admiration for all the things the women in this group do. You help inspire me to keep going. The fact we can raise any subject, and get sensible answers, helps. You make me laugh, you make me cry. Thank you all for being here.
Ps. I am awake now, need to change the sheets, get some on line shopping done, write the Christmas cards, then I can relax. Happy Monday x
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Good morning Ladies~ Hi Runor~ my sweet friend with the gift of such clever humor. Like I said. I smile everyday reading your posts. I got the lawn chairs ready and the Pop corn is a popping. If i nod off, just nudge. Me
Minnie ~ Hope you slept well my sweet. I was online shopping last night too. Eeeekkk. Afraid to look at my account I am. lol ugh. Everything is SO! Expensive!
Tanya~ I never drank the lemonade concoction!! LOL. I'm so glad they are consistent all Over with us! NOT!!
Marian~this thread does have tremendously wonderful people who are loving enough to have taken me into their hearts and accepted my attempt to create an online. Family. The support is needed. I cannot live with out it. As you already know, some become actual friends. People whom you bond so strongly together. It is definitely a sisterhood. So with open arms. Welcome to our little pub!
Mae~ you doing ok? A little dust settled there.
Scwilly~ thinking of you. Worrying about you having to go to the er! Hugs dear friend !
Pots is such a part of this thread for sure. We love all our sisters. Hugs today to you all as we trudge through another week. I'm attempting to start to decorate. The haul begins. Uh! Not ready but Christmas is barreling forward for sure!!! 🎄🎁. When it's all done you feel so good!
Much love ladies. ~M~
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Thank you for your kind condolences. My dad didn't want any services. I'm adjusting to the fact he's gone. He was ready and had pre-planned everything.
Welcome, Marian.
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Hey Yall! (yes I'm a southerner
)I have a really strange situation that I want to see if anyone has ever experienced..... Short history first....took Xgeva monthly for over 3 years. Had a tooth extracted during that time frame. About 4 or 5 months ago, I started developing symptoms of what I thought was ONJ. I even have a small area of exposed bone over the area where the tooth was extracted. My normal scan in September indicated "complete opacification of left maxillary sinus". I didn't have a clue what this meant and apparently neither did my onc as she didn't really recommend any further testing. I finally went to see an oral surgeon last week about the possibility of ONJ and he is very concerned about the opacification of the sinus! He referred to it as a mass that has completely filled the sinus area! He mentioned sinus disease, absessed tooth, ONJ or cancer spread! Needless to say, I am terrified of just about all of these possibilities. I will have a dedicated scan of the area this Thursday night and will be scheduled for a biopsy, sooner rather than later, I hope. Have any of you ever had anything similar to this; especially any that may have had ONJ?
I would so appreciate any feedback and your prayers. Will follow up once I know something for sure.
God bless you all and have a wonderful day!
MM
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Sorry for you loss muddling but I gotta say I admire your fathers handling of it, pre-planned, no fuss, sounds like my kinda people.
I’ve never had a PET or the lotion drink but I do get CT’s, for those, I have it mixed with OJ and drink it an hour before the scan, I never taste anything odd.
Welcome Marian 😀
The Christmas party was fun and the pomegranate ginger margarita’s were dangerously delicious, I had many, maybe 6-8 but the were served in wine glasses, about 4 oz each. The food was excellent again.
Off to run some errands now, I’ll check back later.
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Muddling~I am thinking of you. A lot of people don’t want to have services these days anymore. It does cost so much money. But relatives feel the need for closure I believe. I am hugging you tight. I hope each day you find a little memory tucked away from him that will pop into your mind and make you smile. I will be facing the same thing very soon. 🤲~M~
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Masons~I would just google that exact phrase and see what comes up, to give you a blanket idea. Don't go wild on what it says because a lot is inaccurate or old. But I feel that some where in the middle with guidances through your doctors. Call and ask as many questions as you need to feel informed. I know XGeva does a number on the jaw. I suffer from jaw pain as well. I also have terrible gum side effects. I Am sending you positivity and strength! Much love ~M~
Mae~. Hi there! You amaze me!! I could never even drink that many when I wasn’t Ill with cancer. Now food. That I can master for sure. Made me hungry. Glad you enjoyed yourself! Always good to see you!
Hugs to all
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Muddling-I'm so sorry you lost your Dad. Big hugs!!! I lost mine, almost 14 years ago, and still miss him everyday. I also have preplanned my cremation. I did not want to leave it for my husband and kids. No wake (my mother-in-law was shocked at that), just a funeral service at my church. We have bought our plot (right next to Dad, and Mom when she goes), and have designed our headstone (still not done yet). I will write my own obituary (haven't started it). I told my husband to have a big party, with the money he saved. When my Dad died, my Mom, my 3 sisters and I sat there for an hour, deciding on cremation or not. My Mom said she wanted to be cremated, but my father only said that it would take days for him because of all the alcohol in his body. She finally decided on showing him at the wake (in a rental casket), then having him cremated. He was driven to the church in the casket. Then they brought him back to the funeral parlor. It cost her, for just the wake, funeral and cremation, over $8000! It cost me $1,300 for the cremation only. I got her to preplan her's too. She is doing the cremation, but is also having 2 hours at the funeral home. She found out that if we have a priest come from our church for a service, it will cost her $500 extra. She said in that case. We will take her ashes and have the funeral at the church. We'll just pay the church instead.
Pots-My grandkids make me feel the same way! I love it when I see them! Even though they wear me out!
Minnie-I had rads 13 1/2 years ago, when I was first diagnosed, and last year for spine pain, which didn't help. I'm hesitant on this next rads. I see him tomorrow. I don't think it is just my shoulder blade causing the pain. I know my ribs hurt a lot, as does my spine. I also have muscle pain. So I don't even think I want to bother. I'll see what he says though.
Marian-Welcome! I drink the barium, for the abdominal CT scans. I have a chest and abdominal CT scans (with iv contrast also) and also a bone scan (which they inject nuclear dye in 4 hrs before), every 3 months.
Tanya-Sorry you missed your plane! I'm sure that was a very long day for you in the airport. We had to sleep in an airport (in wheelchairs), after they closed the customs area in Toronto at 9pm. There were hundreds of us stuck there. My Mom and sister were in front of us, and got through, right before they closed the door on us. Love the pictures you took. We are planning on going to the Grand Canyon in the late spring.
Lynne-My TMs jumped from 715 to 760 in one week, after jumping form 250 to 500, in 2 weeks, then 715 the next week. Yes, 2000 tm goal, is probably unusual! Pats brought the team out yesterday. They played a lot better than last week, for sure! Always have to wait until the final quarter to get things done though! Glad you had a wonderful Thanksgiving with the 5 sons and their families who came. I'm sorry that one son (who lives in the same town as you!!) decided not to come. Maybe he'll come around soon! Love that the "just underwear and socks" threat worked on your grands! LOL
Boston called me this morning. The earliest they can get me in (she's away on a conference this week) is Dec 18th. I called my oncologist's office and let them know she wants to see me a week after. Of course we are away (only 1 hr) from the 21st to the 28th. Of course, my oncologist will not be there on the 28th (she's only there on Fri). The scheduler said that maybe she can schedule me for the 21st. I told her we are not checking in until 4pm, so as long as she did it early afternoon or morning, that would be fine. Then she says I could see a PA on the 28th. I said as long as it's in the afternoon (since we would be leaving in the morning). She says that I would be getting treatment that day. I said how would you know how long my treatment will be, if we don't even know yet what the treatment will be. She said she'd talk to my oncologist, and get back to me. That was at 10 am, it is now 2:45pm, she hasn't called. I know my onc is there today doing paperwork. Just talk to her and get back to me! Crazy!
Our younger daughter called me today and asked if we could watch the boys tonight (not sure if it's overnight, I can't drive them to school in the morning, they leave too far away). I asked her what was going on. She said that her and her husband are going to talk about divorce tonight, and she didn't want the boys there. She was crying. They will have been married 8 years in February. She tried to make it work after his infidelities, for the kids (that would have been it for me!), right after their younger son was born (he's now 6), but he seemed to be growing further an further away and refused to go to therapy. Not sure what is going to happen. She could pay for her monthly fees, where she lives, as well as her car, so the boys could still go to the same school. Hopefully, she sticks to her guns on that one. Or find another place in that town, for at least the end of this school year. She has a dog and a cat too though. A lot of change for her and the boys. I'm so sad for her.
Sunny and warm (48) here. I think I will go outside, and try to rake up some of those leaves, that aren't covered in snow. I'll make sure to bring the phone too, just in case the dr's office decides to call back
Hugs!
Lynne
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Hi all - big congratulations to everyone with great results. Big special hugs to those going through hard times (Thinking of you Sheila) - I did a big update in the liver mets thread if you would like more details, but my Liver is not behaving and I seem to have taken a step downwards.
I compare my life to a spiral staircas. Sometimes we go through locked gates we definitely can't come back up on (eg on mets dx), sometimes we slip down a level and can be medicated back to our last position or better (oh how we want that for everyone) but the journey is ours and my experience won't change yours, unless I have some good info for you from my experiences. Mostly we go for the next treatment after treatment. Right now I seem to be in the position of moving a bit fast through chemos as I would like. Now my liver is making me ill. I'm nit giving up, but am facing reality that maybe what I always knew could be is just round the corner. Who knows, I might react well and have a few more months but my body is not looking like it will behave, especially that darn liver! I am not without hope, and with you your own strong hope as you go through this life of treatments, scans results and news
Thankyou to everyone on this thread for their inspiring support.
Love to you all.
Sarah
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Lynne(Man)~December 18 seems far away! I want that knocked back now!! I am sorry about your daughter. I went through it myself at age 35, it was extremely stressful. The kids were the focus as it always seems to be. I hope it goes as smoothly for her as possible. And am sending her family and yours good wishes. Especially since it's Christmas time. Never easy to live life no matter who you are at some point.
Scwilly~That liver needs a HuGe talking too! I am hopeful that your staircase is very long. We can get our carpenter husbands to build you a longer one ! I know you ladies never give up. That's why I sit in awe of all of you.
Loving hugs.
Sheila??
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Lynne, I am sorry that your daughter is going through such a difficult time. As you know, one of my sons is in the middle of a difficult divorce. He found out last year that is wife had been having an affair (with a man who was also married) for over a year. She is still seeing him. My grandchildren don't know about the affair, of course. They are 12 and 13, and they have had trouble adjusting. I have seen some improvement lately, but let's face it. All children want their parents to stay together forever. My son just closed on a house and will be moving in this week. He has joint custody. The kids requested that, and the court and attorney felt that they were old enough to speak for themselves. Their mother wanted full custody so was less than pleased, but she does want them to be happy, so she will be okay. Your daughter is lucky to have her family close by to support her in the days ahead. Boy, you can't get a break when it comes to appointments. Is your oncologist okay with the wait? Where will you be spending Christmas? You probably already told us, but my memory is like a sieve lately. I am lucky I remember my own name sometimes.
Mason, I am surprised that your oncologist didn't refer you to someone for further tests when the scan report included comments about opacification of your sinus. I admit that I had know idea what that was, but I would expect a physician to be concerned. It is a good thing that you took it upon yourself to go to an oral surgeon. I am praying for you, and I will be thinking of you on Thursday.
Marian, it is wonderful that you met with 12 other women in Vancouver. I have had the honor of having lunch with three people on these boards, and it means so much to me.
Hugs and prayers from, Lynne
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Hi Marianelizabeth, before ct scan with contrast, I have to drink 20ml of liquid 8 hours before, then another 20ml mixed up to 200ml 2 hours before. It isn't thick or nasty tasting, slightly minty. Welcome to this group. My daughter lives in Victoria BC
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Muddlingthrough, very sorry to hear of the loss of your father. Losing a parent is very difficult. I lost my Dad 8 years ago and the loss is still raw. You have my condolences.
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Lynnwood~Hello honey... hope the funk has cleared. I sincerely do. I am going to visit my father tomorrow, he called me and asked to see me and my Daughter since she has the day off. My son won’t though. He told Me point blank “It won’t be long please come spend time with me”. I knew one day i might hear those words. But One never really can prepare for something like this. Even estrangement can’t change the look in their eyes of history. It is a very a distant feeling. But so familiar.
Minnie~sounds like you have been to a heck of a lot of places. I am so envious. The only place I can say I have really been is..... Hawaii and Bermuda... and Chinqoteague virgina on the hook alone with our bronco and no just our family for miles. Brought home 25 full conk shells and felt like I was the only family on earth. Saw wild pony’s and birds and turtle eggs hatching. That is living. That is what life is about. My sweet DH took us to NC and rented a magnificent house with its own pool and hot tub, porch with grill and lovely kitchen area. It was heaven. I loved the beach. Loved it. So very much. It was one of the best vacations we took as a new family together, my son brought his BF and we love him so it was a blast. I have such fond memories. Of everything. Christmas and love.
Lynne(50’s)~Hello beautiful... I’m sorry that your one son chose not to attend dinner. No one knows why people do what they do. I am learning this now dealing with my step Monster, who all of a sudden wants to be extremely helpful. But yet has me banned, a few years ago, when the first heart attack happened I saw him one morning in ICU. The next day when I arrived the nurse asked me for a password that was set up by the “family” since I didn’t know the password I wasn’t allowed in My heart crashed that second not knowing if he would live. I can forgive a lot Of things But not that No way! Hope your DH is well and I think of you everyday!
Bigbhome ~ thinking of you as well sweetheart!
Love to all! GP hope you’re ok honey!
Footprints if you see this..... ??????
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Micmel, Mae, JKL, 50s, Minnie, Lynne, Pots, Tanya, Scwilly... thank each and everyone of you for not only understanding, but making me feel less alone!
Lynne, it would make me happy for you to start a new treatment sooner than later. I hope they can figure out how to make that happen. And I’m so sorry about your daughter.
Muddling, sorry to hear about your dad, too. Please accept my deepest condolences.
Runor, I often forget you’re an “early stager”, you’re just one of “the girls”... you don’t drive me crazy, but if I’m honest I wish there was a way to take your fears away and allow you to live happy cancer free years! Of course, selfishly, we’d miss you around here!
I’m beginning to feel better. Definitely went through a dark patch there for a minute. My Rad Onc prescribes abilify, so I’ll be starting that soon.
This is my week off Xeloda and I didn’t throw up today so all in all I feel good
If the vomiting continues, I will contact MO. I really think I’ve only called 2 (maybe 3) times since my dx so I shouldn’t procrastinate if I need it. I’m just hoping to feel better this week. My daughter got engaged two weeks and we’re going to look at dresses Thursday. I’m so excited! I hope you all are finding things that make you happy every day. ~ xox
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Sheila~ congrats that your beautiful daughter has gotten engaged! That's such a special time. I just went through it all. It happens fast. The wedding came quick and I had a total blast planing it and spending time with her. My daughter wore my dress on her wedding day. It fit her like a glove and was so unexpected... it was wonderful to see her in it. I'm happy you're not throwing up today, and are feeling better. A day that we can feel better.... is a day to enjoy. Missed you around. Hugs to you and your daughter my sweet friend ! ~M~
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Thanks everyone for the welcome! I don't know how so many of you can remember each other especially at the of busy days and when not all is well (a little joke there) to post. So even though I am already in bed at 8 PM, I am writing a short post. My oldest son and partner dropped me at my hospital this afternoon after a 2 night visit from up island where they live right now. Being Monday it was a long wait plus longer because of port access. No worries, talked to a couple of others then walked 3,7 km home thus a reason for exhaustion. Tomorrow is nerve block in AM and chemo teach in PM~~it has been over 5 years since IV chemo. Thursday I have my first weekly Paclitaxel. Lynne I am so sorry about your daughter and husband with 2 little ones as well. I hope it can work out as easily as possible but it has to be gut wrenching for you. MicMel, so much appreciation for you. Minnie, are you Canadian? Wondering as your daughter lives here.
This is it~~my eyes are shutting.
Marian
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Marian~I hope you slept like an angel. We will all be In your pocket for support. We do tend to get a little noisy so just throw us some food ! As our beauty Parry says we are a team for sure. Wow walking Is good for you! Sleep well my friend. You will be in my mind today. Hope it's quickly over! But why the nerve block?I've had that as well! Hugs to you!
Parry??? Gracie?? You guys ok in there ?
Much love my sisters ~M~
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It’s the strangest thing. Over the summer I had radiation to a large tumor in my subpectoral lymph nodes that had started impinging in my brachial plexus and pectoral muscle causing me ALOT of pain and limited use of my arm due to pain. Radiation was amazing. I mean, it was awful to get through (positioning was HORRIBLE!), but within a couple of weeks the pain was gone and I was able to fully use my arm again. Off and on this area aches, but it’s not been a problem. But as the weather changes the achiness is turning into an uncomfortable pain. Not severe, and I pray it doesn’t get back to that! But on colder days, or rainy days, it acts up - kinda like arthritis would. Is this as weird as I feel it is? Anyone else have weather related pain that isn’t due to arthritis but rather tumor??
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Sheila~I’ve actually had brachial plexus surgery and the weather does totally make a difference for me. Also, where my tumor used to be, I have ghost pains. A lot of them. They come and go and sometimes last all day. The colder weather definitely makes a difference to me. I always began to freak out. Today I am feeling the same thing! Love to you friend ~M~0 -
Sheila/micmel, it may not be the same but the left breast/underarm where I had surgery and rads seems tighter during the cooler months and I still have some angry nerves giving me quick sharp pains.
On a sweeter note, DH is so great. I have a cup that I use for water and keep it in the same place on my table every day. This morning I found a hidden love note, awww....
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Micmel, I am quite interested in your story specially to do with the brachial plexus surgery. My nerve blocks (this is number three) are should try to help with the pain caused by the tumour that is entangled around the neurovascular bundle all of the brachial plexus. When it was diagnosed in the summer of 2017, I was told that there's no way for surgery due to the location of the tumour. I had radiation to that area almost immediately but it was considered palliative to try to help with the pain which at that time started at my right scapula and came around down my shoulder my hand. The radiation did release the scapula but did nothing else. Wow, I did not realize that writing this right now brings back the memories that shocked me at the time. I always felt that I would metastasize, but never in a place but no surgery could be done. For now I am wondering if you can tell me about your diagnosis in the brachioplexus area and how it is that you could have surgery. I have to be out the door in half an hour for my nerve block and I am still in bed. I have had coffee and breakfast in bed thanks to my husband who returned from a trip to a wedding at the Burning Man festival site. He went on a road trip with my daughter~~ the Middle daughter of good friends of ours from Vancouver got married there on Saturday night~~ fun eh?
Anyway, must go but will be back this afternoon.
Marian
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A young man in North Carolina is devoting his spare time to support the cure for Stage IV Metastatic Breast Cancer. He is custom making these key chains and donating to Metavivors. He is the youngest son of our dear BCO sister, Lula73. He is also growing his hair to donate for wigs.
I ordered four of these key chains. I am showing two of them above. I was so pleasantly surprised to see that they come with a card plus an envelope explaining Tavin’s cause, plus they come in a pink nylon gift bag. This makes gift giving so easy and it is done so well. The card inscription says:
“This keychain has nails of steel at its core that represents your strength, the wire that wraps around them represents your faith and courage.” Thank you for helping me support Stage IV Cancer research! Tavin
The keychains are $12 each and shipping is $3 for up to ten keychains. They are easy to order through Lula73. You can private message her
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