My Husband, My Life, My Love, My Family, My Cancer
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Hello! May I come in?
I posted much of the following this morning elsewhere on this forum.
Several weeks ago, I had a bone scan that confirmed I
have mets in my shoulder, sternum, sacrum, hips, humerus, and a rib,
along with worsening mets in my lungs and arthritis in the rest of my
skeleton. My last bone scan was in January and showed nothing!I am over the considerable initial shock of reading the scan report and
discussed this latest turn of events with my oncologist just two days
ago. She wants me to stay on my latest treatment of daily Affinitor,
Aromasin and Zometa every three months, plus consult with a radiologist
for the worsening pain in my spine.I have been using a walker since I was hospitalized last March with pneumonitis, heart failure and damaged
kidneys from a terrible reaction to Piqray. My balance is off, my left knee needs replacing,
and PT was not helpful.In short, I'm a physical mess. My oncologist is very matter-of-fact, which I mostly appreciate. But it's difficult to hear her say " If you can get yourself dressed and in here,
you're doing well" when I hurt all over and it takes me forever to get
things done.Feeling sorry for myself gets boring very quickly,
so I'll stop here. I just wanted to fill you in on my situation and, in the
process, get some insight into living with bone mets.I also hope to make new friends here, in the living room.
Tina
Tina
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Tina, I am very sorry you have to be here, but yes, welcome to this room. I know lots of ladies will be able to respond and help you. Just know I was diagnosed 7 1/2 years ago with multiple bone and liver mets, and I am still here. There are lots of different treatments available and we all react differently to them. I will be praying your body responds well to the treatment you are currently on, but also know part of the journey is the fact most treatments work for awhile then you need to change because the cancer mutates around them. Ask all your questions, whine, scream, cry… whatever you need to do. We understand and are here for you.
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Tina, welcome, there's a lot of love and support here. That is definitely some hard news to hear, especially after your January scan. Also, if just getting dressed and getting to an appointment means we're doing well...um, hello doctor? I think we could shoot a little higher in defining "well", don't you think?? I'm sorry for the pain you're experiencing, I have pain as well from fracture due to bone mets, and both tramadol and thc help me quite a bit with it.
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Mara~that cat is beautiful!
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Tina~welcome welcome! I’m sorry you’re finding out that news. I e had bone Mets In my spine for almost 8 years. Just gotta find the best treatment. I’m sorry for your pain. We do understand the need for support. That you will find here. We are like a big family. Hugs to you and grab a seat .
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Welcome Tina, I have seen you on other Threads. Mel's Living Room, as we call it here, is the place for you to be. Come vent here anytime. And keep us updated on what is going on with your treatments. And talk about anything else that is on your mind- - cancer-related or something else. We are here for you.
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Tina - so very sorry about your news, which I’m sure was devastating, but this is the place for you. The women here are so supportive and compassionate whether we bring good news or bad news to the table. We are here to listen to whatever you want to share.
Had my annual physical yesterday with my PCP. Was so upset as I have lost more height. I used to be 5’10”. Since the onset of my back issues starting in 2017, I have been shrinking. Last time I had my height measured about a year ago, I was just over 5’7”. Yesterday I discovered I’m now a smidge over 5’6” 😱😱. My weight has remained stable but my Buddha belly continues to get worse as I shrink. I want my old life back for sure. And I won’t even start about how this disease has aged me. Deep wrinkles that weren’t there before, hair that continues to fall out. I wonder who that person is in the mirror. In the real scheme of things, I realize that this is just vanity but this damn disease steals everything.
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Oh, damn, Tina!!! I’m so sorry. Despite this stupid cancer, Mel’s Living Room, as we call it, is the best place to be. The diagnosis of mets is really sucky. I found radiation to my spine/hip/femur really helped. I did kind of freak out when the nurse used the term “palliative radiation” until I realized that she just meant that this was not intended to cure, but rather to help with the pain. And for the record, just because you can get yourself dressed and into your doctor’s appointment does NOT mean you’re doing well. Sheesh! (((hugs)))
(And thank you Word Editor for suggesting my use of the word DAMN may be offensive to some. Get over it! I'm laughing as I write this part. I like to write my comments in a Word document then copy and paste into here. No one here has suggested that I not use the word DAMN. In fact, I think I'll keep using all caps for that word. It's fitting, right?)
Love to all,
Carol
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Wow, I love listening to your Christmas plans going on. I don't celebrate myself anymore but that is a choice though I do enjoy the season and DB will probably take me out for dinner or something. They are refusing gifts from me, his birthday is tomorrow, all he wants is a text. He says they make more money, they don't mind gifts and dinner. I usually watch movies, not always Christmas movies and will order something from M&M meat. They have nice, premade meals that taste really good and that could be nice for a dinner or two.
Laundry on the go, mail check and not sure what else to do besides the tv ads for money, I usually watch cooking videos, little games for money, searching for bit of money in between chores or TV watching.
My brunch consists of 1/4 cup rice, precooked put in frypan first. Hardboiled egg, just one, once cooled put into chopper with /4 cup black beans and lots of wheat bran to allow for the beefless ground texture, add beefless ground to fry pan along with bean/egg mixture. Seasoned with some chicken broth powder, steak seasoning and cooking in a good amount of garlic. Used garlic spread since it is milder, did not take long in pan as eggs and rice were already cooked. We will see how it tastes, probably will be good. Used small amts of ingredients so not to get overful. Tonight, looking at some sort of pancake with eggs and chopped beans, need to use these ingredients before they spoil.
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I hate that my mind is not as sharp as it used to be.
I am a member of a volunteer group, and I was sending emails and talking on the phone today. I feel like I am having to push back the "fog" when I am trying to think clearly. Like, literally, I have to work to think. Good grief. Some may say "well you are getting older",, but I am only 53 years old. I don't think it is all "old age". I think it must be a combination of the stressors of cancer and all that entails, and the drugs we are on. I used to multi-task. Now I have to write notes to myself, and I feel like sometimes it is hard to hold up my end of a conversation.
This is exhausting. I could never hold down a job like I used to. I don't feel like I am a very good volunteer anymore. Sigh…..
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I feel the same way Candy!!!!!! I struggle to recall things, names. We watch jeopardy and I know the answer but it takes time. I’m a rusty old nail now. I am also 53. Sending you hugs. This cancer walk is so difficult
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Oh TINA, that's awful news. I've been wondering where and how you are. Amazing how it can spread like that. I've been on faslodex 6 years and recently asked about taking a med break. Doc said no way. It will come back someday like wildfire. Maybe he's right. Let's hope these latest meds kick in and do the trick for you.
CANDY, I too feel the same way. Don't know to blame the cancer, meds or age.
I also miss my old life. But I'm thinking it has to do with dh retiring more than me and my health. And that was 11 years ago.
Scans tomorrow.
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Yes, Mel!!!! I too watch Jeopardy. I will know the answers, but I go "Um, Um" and cannot come up with the words for the answer until the contestant says it. Then I go "yeah, I knew that".
I don't think it is all my age, as others that are older than me are faster and do not seem to struggle as much as I do. So the difference in me and them is the cancer diagnosis and the cancer drugs. That must be it. I should not struggle as much as I do at only 53. I just feel "foggy" so much of the time.
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Candy, I blame any difference in me the cancer drugs and treatments as well. While my brain is pretty functional, there are times where it takes me longer to get dressed and showered than it should. My patience for anything is gone as well which would not work at a workplace. Have not looked into data entry or something at home either, too late now I think.
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I'm much older than you 53 year olds (70), but I have experienced the same things that you and Mara are talking about. I think it is mostly drug side effects. I too get told that it's aging, etc. and I just don't buy it. We know ourselves and we know when and generally what makes a difference, and I'm pretty convinced that most of the stuff everyone is talking about here is due to the drugs. Ugh!
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Ha! We’ve been watching jeopardy reruns too and I’m having the same problems. It’s like my brain stutters.
Hi to everyone 😁
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@gailmary Best of wishes for your scans tomorrow. @tina2 Welcome to Mel's place. I posted on the other thread in response to your scans. Again, I'm so sorry. I had no idea that bone mets could occur so quickly. Waving hello to all you great ladies. You all are my blessings. In pockets for all your needs.
Mara, you inspired us to watch Chopped Cooking Show. It was fun to see the Chefs cooking ideas from Julia Child's Kitchen. I suspect you could win it all if you were on the show. You truly do inspire me.
DH is scheduled to have his drain and bag removed tomorrow. Hopefully he will get back to being his usual self. He has a great "McCob" dry sense of humor. It's been MIA for over a month now.
Can anyone tell me what they do for inflammation. It's over the top and I can't do anymore IV steroids right now. I'm using Aleve, lots of hydration, Gabapentin 300 mg, Claritin, LDN and Lidocaine gel. I strongly suspect that's the reason for the hearing problems and nerve ending burning.
Watching The Voice and enjoying Reba's singing. Have a good, peaceful, pain free night.
Laurel
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Agree ladies brain is definitely not what it used to be! There is no way I buy the aging thing at 57, Mae said it perfectly my brain is stuttering for sure and it stinks!
Tina Warm welcome in to the living room. I'm sorry to hear about the bone mets it truly can be a merciless disease at times. I am putting faith in your treatment that it's able to hold you stable for a long time. Many of the ladies here can identify with you and have good advice and support here. Hugs.
gailmary In your pocket for a good scan, sending positive vibes…..
Irish So glad to hear DH is getting the drain removed , AMEN to that! I hope you both get a much needed reprieve from these acute situations that keep popping up. Ugh as far as the inflammation goes I can't think of anything at the moment to add to help you. Sorry, I hope someone has a suggestion🤞
Waving hello to all here and wishing everyone a peaceful day.
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Welcome Tina2 the living room ladies are amazing. You can share any of your fears, emotions, and concerns and you will be welcomed and given emotional support that extends beyond these pages.
Take care all.
Tanya
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Hi lovely Livingroom Ladies. I’m going to keep this post short. There is so much going on with everyone I’m sending you all my love.
@tina2 welcome and I’m so sorry you had that scan result.You are in the right place to talk about your struggles and share your good days as well🩵
@goldensrbest I hear you. Same here too. I’ve lost height too. 5’4 all my adult life now 5’3
@threetree yes me too….70’s. When I was in my 40’s &50’s I was riding, and jumping horses at horse shows. Then at 54, a brain hemorrhagic stroke, 2 knee replacement’s and at 58 breast cancer. Now I really feel old and very much miss my old life.😉
@mara51506 Hi girl.
@illimae I totally relate to brain stuttering
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Haahh I lost the rest of my post. I hate when that happens Scans tomorrow morning. i always get nervous about scan. Waiting for the. Other shoe to drop. I hope I’ll remain stable with no surprises 😬.
@gailmary and @candy-678 , I think the cancer, meds and age all combined is what causes the brain fog and physical ache and pains. I’ve had bad arthritis since my 50’s and often the pain was so bad I thought I was developing mets. I met with my Neurologist today who I see for pain management of my cervical stenosis caused by severe degeneration of cervical spine (neck). He helps me so much.when I was first diagnosed with cervical stenosis, my oncologist saw it on my scans and suggested Ted I see a neurological surgeon. He treats me every 6 months with cervical spine injections that keeps me feeling pain free in my neck…
@irishlove Hi dear girl. …. @micmel Hi, …Hey, Jersey @cookie54 and @tanya_djamila @sunshine99 @sf-cakes🩵 👋waving hello to you all♥️
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Candy, yes, yes, yes! I know I was not this slow before! I join with threetree at the age of 70, but only a couple of years ago I could beat Jeopardy at least most of the time. Now, I have trouble thinking of the right words to say here, and how to spell them!
Shanagirl and gailmary, I will be praying for low anxiety and great results for both of your scans tomorrow.
I haven't shrunk but definitely losing strength and endurance.
I saw my MO today and I have another UTI, UGHHH!!! I am so careful and I drink lots of water. I guess it is just my thing. No wonder I am feeling so poorly. I have no fever… just horrible fatigue and dizziness, and gut pain. it is just what it is. Good thing I was scheduled today for my six-week check. Today it was 66* but it will snow on Friday. That is the weather in the Rockies!
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There's no draft folder here? Ugh.
Thanks to all for the well wishes for scans today.
SHANAGIRL I hope things went well for you today too. I was in and out quick. With results already for bone scan. Still stable. Yay. Now to wait a week for the ct scan report. That's when anxiety builds for me.
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Hi all you lovely gals. @shanagirl and @gailmary In pocket for scans. May they show good news.
I'm 67 with a birthday coming up. I use to walk fast. And in heels, too. lol. Now, forget it. Keeping my ability to walk after 22 years of MS has been one of my blessings. Walking is a stretch, let's call it the shuffle.
Went to lunch with DH at the hospital cafeteria and then he had his drain removed! Hurray. He's in much better spirits now. The dogs (girls) haven't had a neighborhood walk in some time. He's gonna start back tomorrow. Bow-wow girls! 48 degrees right now in central FL. Brrr….. Stay warm girls.
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Shanagirl - Wishing you all the best of luck tomorrow with your scans. I had mine yesterday and am waiting on the final one of three scans for results. I totally understand how worried you can be. It is never easy and just such an anxiety producing thing. Wish I could join you and sit in the waiting room and root for you while you go through it all. Please let us know how things go. Fingers crossed!
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Candy - you hit the nail on the head with having to work to think. It seems like a lot of us are feeling the same way. There's no way I could go back to work. My job was to manage policy compliance for our program, which meant I had to know policy backwards and forwards - now, I can't remember what I had for lunch!
I feel a bit guilty because I haven't been posting, but I have been reading along. I just can't keep up with all the responses, and I worry about leaving people out. So, I'm silently rooting for all those who need it, and celebrating with those who don't.
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Oh Seeq - I just want to echo everything you just said above. I am slowly winding up my work life and have just a little bit more to go, until I am totally done. I just can't do it anymore and a large part of it is the "thinking" that I can't do. I too read along, but cannot always keep up and respond and I feel terrible about not responding to so many who are having a rough time. I notice and I think about them, and wish them nothing but the best, but I can't post about it. It makes me feel awful. So I too can sometimes only give these general, collective well wishes to everyone going through a rough time. That old "becoming a mere shell of my former self" sort of thing. How awful!
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threetree, because your comment was the most recent and I don't have to scroll back—I hear you! There are some here who are so good at mentioning each comment. I'm not. I DO care, and like you read through them, sometimes thinking, "Well that sucks!" but then I don't comment on it.
I don't think it's "just aging" either. Sometimes I just want to smack the person who says that our issues are just age related and that they could get hit by a bus, too. It's CANCER, pal!!! That bus is coming straight for me!
On a lighter note, I spoke with a "financial advisor" yesterday from Scripps. She let me know that since I've met all of my out-of-pocket costs for this year (you think???) that my radiation should be covered without the 30% co-pay. Now I'm just praying that I can get my two weeks in starting next Monday. Then I'll be done by Christmas. I'm also hoping that this new drug Truqap won't start until January. I don't want to be dealing with the lovely SEs over Christmas when we're visiting family, or I'm stuck in the car without a bathroom in sight.
Off to get "mapped" today for my esophageal radiation. Love my RO!
Love to all,
Carol
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Sunshine - Well I guess I'm not the only one - thanks for commenting so I don't feel so alone. There are others too up above, but yes, it would require scrolling. It is a terrible feeling indeed when so many others can keep up, but I/we can't, because as you say "I do care!" I'm afraid I can appear on here as if I don't. For me I think it is mostly the anti estrogen drugs (not "aging") that causes most of these problems. The Verzenio causes some too, but I think this estrogen deprivation is pure hell and the main reason for my troubles. There is just the chronic treatments in general and the years that go by of all of this that probably wear us down too.
So glad you will be able to get your radiation covered. These treatments are so crazy expensive, I don't know how younger people especially, manage it. Those of us with Medicare I think get a bit of a better deal.
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Well fuck, thought I was out of the woods with the property owners wanting me out for renoviction. They have not given papers or anything, just wanting to talk to me and offer money to leave. I said it would be a waste of time as I can't afford any of the apartments where you pay electric and I need to be close to the hospital. There are only two of us of 1 left who were original, they want us out because we don't pay electric and pay 500 per month less than money and 1000 less for the other lady. I won't talk to them without DB as he is my POA. If evicted, there will be nowhere for me to go, any extra money I have would be gone in short order. I told her that if I moved, I would not be able to eat. I am firm on not moving. I think it is disgusting that they want to push people out who will have nowhere to go, affordable housing is a 15 year wait. I will continue paying rent as normal and no meetings without DB.
I also need to shut of my panic brain and take this the same as I am with my cancer. Had to learn to go one day at a time with that, already cried to a friend who talked me off the ledge. Apparently I helped her too, talking made her back feel much less painful. One day, one hour and one minute, exercise more and stick songs in my head or ears when thoughts intrude.
I am treating myself to McD's. I slept in til almost 11.00. Will be going out with brother, will not spend whole time talking about this development, just pay rent and go from there, react as things happen. Just let him no basics and that is it.
I will be in anyone's pockets who need me and hope everyone has a good day.
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