My Husband, My Life, My Love, My Family, My Cancer
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I agree.....no doctor can tell you such a thing. I know many many women that have been told similar things and they are ten years out. Idiots. Why would anyone just throw that out there.?? People infuriate me! Just keep being the strong amazing woman and mother you are. Mother first. Amazing mother! No one can tell you any such thing! 😞😡 dumb asses. Hugs and love to you Keetmom. ~M~
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Chicagoan~ so very good to see you!! Glad you're around! 😊 hope all is well ! Hugs ~M~
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Keetmom,
What the heck? Is your MO clairvoyant or a time-traveler or maybe even God? He or she has absolutely no idea what will happen to any patient during the next two years - not you, not anyone! My MO has told me that he does not have a crystal ball and has no way to predict what will or will not happen to me nor can he predict how quickly or slowly things will change. He can talk stats, but stats are nothing but data points and generalities that cannot accurately be applied to any individual. You are not a statistic. You are a human being filled with unique properties. Your MBC also has unique characteristics. If we were all the same and all had identical disease, researchers would have had a much more focused task, and there would be a cure by now. I could last another twenty years or I could drop dead tomorrow. No one knows, and I like it that way. I know I won't live forever, and I have taken care of what I needed to, but I just go on with my normal routine.
So I think you have several ways to deal with your doctor's statement. 1. You can choose to completely ignore what your MO said. 2. You can believe that your MO has powers to see into the future and throw in the towel. 3. You can have a pity party then continue to live your life. 4. You can consider your MO's statement to be what it is, an opinion, an estimate, a generalization.
I think that there will be more treatments available to us within the next few years, and I suspect that survival rates and lengths will continue to improve. None of us should assume that there is no hope.
I am sorry that you have to go back on steroids. I hope you are off them soon.
Hugs and prayers from, Lynne
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Keetmom, hugs to you! Why do doctors say things like that??? If only they realized how their words affect people..0
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I honestly think he only mentioned it because we have so much going on in our house that he wants us to be prepared for what will eventually happen, hopefully longer then that....im not giving up, I was told 2-3 years typically and we are close to 3 years already
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Keetmom, I think that Lynne (Man) was told 1 1/2 years, and that was 6 years ago. She looked very much alive when I had lunch with her last week.
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Keetmom~ all those things going on involve your precious family. I see a strong willed mother and wife. I agree with Everyone else. Statistics aren’t accurate for shit. Sending you love and hugs ~M~
Lynnwood~ hope You’re doing well also! We all need an island vacation with all the chocolate we want! And fruit. That sounds perfect. Resting, swimming, relaxing.
Our minds are so full. Everyday. That would be so nice. My thoughts is an island vacation lined with different colored umbrellas for each of us and many chairs under each so we may all visit and talk to our sisters. Have a seafood dinner 🥘 🍤 lobster etc. or whatever we want. It would be so nice to get away!!! Far away with our DH’s and friends. Wonderful dreamer I am!
Much love. 😞~M~
MJH~ glad to hear you’re lunching with the Lynne’s. How much fun that sounds
Robin~ hope you're ok. Haven’t seen you! Blueshine. You also! Southern survivor..... Divine.....Magda..... Runor.... Bigbhome ❣️To you strong woman....Holmes.....the Lynne’s.....
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good evening MBC ladies
Mae I’m so glad that’s over for you. Rest easy.
Keetmom I keep trying to measure my time left here on earth. No ones ever said the words to me that your doctor said to you today. Words like that help kill us but also force us to face the reality that we all have tucked away inside. MBC is gloom and doom for all of us. I don’t know if I should call it making pretend but it makes me take a pill to sleep. The anxiety sits on my chest waiting for scan results. What’s the cancer doing now? The creeping beast inside. I asked my ONC how much time and he didn’t answer. Not yet anyway. So for now I’m doing as much as I can amidst protests from DH. I pray God gives you a healing that leaves no ailment behind.
Tanya
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Tanya~ very well said my friend. I hope we all can show those statistics a thing or two! Hugs to you lovely lady and beautiful words! Much love ~M~
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Keetmom- I agree that no one really knows what our futures hold. When I ask my MO about survival rates, etc. , he will say "You want numbers?". He knows all of the statistics and answers my questions, but it is very clear that he believes the numbers are averages and that each patients' situation is unique. I think your MO's statement is sadly obsolete. Best, MJH
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Keet et al, when I was on halaven, it was absolutely the worst on me (until I met Gemzar, that is!) with hallucinations (probably from dehydration), turned my blood to sludge, could never get a port draw without calisthenics and a dozen saline flushes; I would literally lie in bed and pray to die. I asked MO how long I could expect if I stopped treatment completely. He said 4 to 6 months tops. Kinda sobered me up. As it happened, the next scan showed progression, so he switched me to Xeloda, which put me in remission in 6 months. But that's the only time he's said anything about it and only because I asked about quitting entirely. Guess I wasn't as ready as I thought. Now I'm actively engaged in living. Even without DH, I have found a sort of contentment I didn't expect. It's not easy, but it's possible.
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By the way, MJH, did you say you live in Maine? I lived there in the 70’s. It is beautiful. What part are you in?
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hi guys! Maine seems to be a popular place, Dianarose another friend from bco lives there also. I am jealous I can't luncheon with you all. I know you may have found each other anyway.... I'd like to think our thread brought us all together. I am sending hugs and love to Keetmom. Right here with you my friend. Right here 💜💜~M~
Waving hello to Gracie~~ hope you’re well y friend.
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Lynne, Have a great trip. I am sure your entire family will have fun at Disney, in the pool, at the water park (can't remember if they are going to Bizzard Beach or Typhoon Lagoon - I am thinking Blizzard Beach.) I can't wait to see pictures! Maybe we will have real spring weather here when you return
Hugs and prayers from, Lynne
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Micmel, your island retreat imaginings for all of us sounds...well, divine!
keetmom, yeah, it is scary to hear a doctor tell you how they think things are going to unfold. My onc was diplomatic. Upon giving me the stage iv news, she said, “with treatment, you could have years." As my blood chilled to the bone, I am not sure how I had the presence of mind to say very forcefully, “Define years!" Because to one person, 3 years might sound long enough to get your affairs in order and get some things done off a bucket list. Maybe 7 years sounds like a long time. Maybe I could have thought she meant 20 years. It was a very open ended statement on her part. I was in my 50s and prior to diagnosis, expected to live to 100 because I had a grandmother who lived to age 102 and a grandfather who lived to age 95. Longevity was in my genes. To someone else, maybe ten years may have sounded like a good long time. In my mind, I wanted 40 more.
Her answer was to tell me she had a patient who started out with a five years treatment plan, which then became a ten year thing and she was now nearing fifteen years. And it gave me a ray of hope on some level.
Several years later, I had to see a disability doctor that my state retirement plan sent me to. He was a friggin quack. I was already over six years past stage iv diagnosis and he flat out said, “Women live 3 to 5 years with mbc, you probably just have arthritis." Yep. I was turned down for disability, appealed it, got a lawyer and eventually was awarded eligibility. So much for Dr. Denial.
Still, I try not to take days for granted. Things could turn on a moment's notice, we all know that, and it might something other than mbc that lashes out. I want to be mindful about living a meaningful life, I think we all do.
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Divine, I had to read your paragraph about the disability doctor twice because I thought that I had misread it. Arthritis? What on earth did you say to him? I would have been speechless, and I am usually full of questions. You are too kind when you call him a quack.
The Univ of Wisconsin Medical Center is doing research on long term survivors of MBC. While I was browsing information about the study, I saw articles about two women. If I remember correctly,one of them has been living with MBC for 38 years, and the other woman has been living with it for 40 years.They were both originally treated by a doctor for whom the cancer center is named. They have outlived him. They still receive treatment there, and apparently live normal lives. No one really knows why they have survived so long. There seems to be nothing about their MBC that is unique or brings an "AHA" moment into the medical team members' minds. One woman credits her longevity to her active lifestyle. In her early days, she went for her chemo treatments then returned home and went right out to milk the cows. The other woman believes that her attitude helps her live longer. I have no idea what the secrets to their long lives with MBC are, but I hope someone discovers and shares them and is able to use them to find treatments/cures. In the meantime, such stories fascinate me and fill me with hope.
Hugs and prayers from, Lynne
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50sgirl, the disability doctor appointment was a llllong ordeal. Let's say his name was Nashir Agglbair. I went to see him at Agglbair Cancer Center. I googled him before I went and saw he had various medical degrees from Iran, Columbia and Scotland. He was a short, balding man wearing lots of gold jewelry in a place that resembled a neighborhood clinic not a cancer center. He was the only doctor there, and I heard him barking orders up and down the halls when I was there. Extremely self-important. I was there for hours while my husband endured a video about all things “Dr. Agglbair" that repeated every twelve minutes on the big screen tv in the waiting room.
It took me months to get over being shell shocked by the whole thing. I'd been instructed to take DVDs of all my scans, there were six years worth. I could only look at him silently when he brought up the arthritis not mets subject. He had not looked at a single one of my scans on DVD! Nor was he a radiologist! He said I could have the DVDs back! I felt like he was ridiculing my health care choices and belittling me, even tho I go to a well accredited cancer center at a respected Pittsburgh hospital. The clincher was when he said any woman living beyond the average life span of a metser was considered an outlier, and then looked at me as though I surely was not special enough that I could have that distinction.
Of course, the state retirement board hires these doctors instructing them to turn down as many disability claims as possible. I'm sure the doctors are paid accordingly. It was quite satisfying when my appeal for disability was eventually approved.
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Keetmom-I asked my oncologist what the average was for stage 4. She told me 2 years for those with only bone mets, and 1 1/2 for those that also had organ involvement (I have both lung and liver, as well as lots of bone mets). She then said right afterward, that she had 2 women that were both 10 years out, and one was still working. Only God knows. I'm 6 years out right now, and have plenty of other treatments to try (so my oncologist tells me). I'm sorry to hear about the steroids. I hate them. I have to take them 3 days before chemo, during it, and 2 days after for side effects. I was taking 2 pills twice a day, she lowered to 1 pill twice a day, and luckily, I still don't have the awful side effect I had with the first dose, a year ago. I don't sleep with the steroids, and make my family miserable! I hide in my room a lot, during that week. And yes, as Lynne said, I'm very much alive! Hugs to you!
Lynne-I leave at 9 am tomorrow, for Boston. My mother got sick this week (this happened in July too!). She has COPD and uses oxygen at night. This week she's been using 24 hrs a day, as well as using the nebulizer 4 times a day. She's been wheezy since Sunday. She saw her primary Mon and yesterday, I went with her to the pulmonary dr. Mom decided that she's not going. She didn't want to end up in the hospital in FL. My husband called Delta about her plane ticket. They said she could take the credit and would have to use it by September (we bought the tickets last Sept), or we could change the name on the ticket, and let someone else use it. I called my youngest sister (there are 4 of us, I'm number 1) to see if she wanted to go. She said she was broke, and couldn't come. I then call sister number 3. She said she was taking of Mon and Tues the following week for her birthday (on next Sat). I told her she could do it next week instead. She asked her boss and now she's coming with us! So glad we didn't lose the $550 we paid for the ticket. Mom has decided she's not traveling anymore. Only if we drive and we're not too far from home. We've already booked a week at Newfound Lake for August, and she's suppose to come. Hopefully this doesn't happen again. It happend in July too when we went to Winnipesaukee. My husband says we are not telling her we are going on vacation until the day before so she doesn't get sick the week before we leave. We'll see. My younger daughter, her husband, and the two boys are staying over at my house because we are leaving around 9. I guess they'll have to blow up the air mattress and sleep on the 2 couches. Someone can sleep on the trundle bed in our older daughter's room. Our eldest son is going to meet us here. We have flight line for the kids and grand kids. My husband, sister, and I will go in the limo. Thankfully, it's a direct flight (the only way I'll fly unless they don't have one!). It looks like we will be missing some warmer weather while we are gone (it will still be warmer down there). Hopefully, we aren't back in the lower temps when we get home!
Mae-Happy that your procedure is over. Hope you are feeling good.
Divine-That disability dr was a quack indeed! Arthritis?? Really?? Wow!
Micmel-More surgery? I pray it all goes well. Hugs!
Well I've got to pack for tomorrow (yes, I leave everything until the last minute!). I might get on here on vacation, but don't count on it. I will post pics when I can. Take care, all of you! Hugs!
Lynne
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Magda-I live about 30 miles North of Portland, in a town named Topsham. We are across the river from a town called Brunswick. Where did you live in Maine?
Lynne(Man)-Bon Voyage and best wishes for a fabulous time!
Divine- seriously? I have seen some doozy MD's throughout my career as a lab tech, but this guy sounds like a complete fraud!
Best, MJH
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keetmom, what a thing to say. You prove him wrong!
MJH, full of admiration for your energy for your grandson. I'd be on the floor.
Mae, hope all well.
Love to all x
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Hi all, doing well today. Trying to figure out dinner, DH is preparing to go back out on tour, so I gave him the night off. I’m thinking a parm crusted cod, wild rice or quinoa and broccoli maybe. I started a jigsaw puzzle and am binging Netflix. I’m having occasional twinges of pain/pressure where the frame was and itching at the pin/screw sites, it’s a little annoying but normal.
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Hi guys!!
Exhaustion woman here armed with her pillow and night Medicine, ready to sleep again ohh how I love to sleep. I can still tell I am recovering, because shower time is rotten. My abdomen needs time to recover. Can't be up real long regardless, but I can tell the difference. Not quite there yet. Have to start ibrance again Sunday night. 😞🧟♀️🧟♀️. Lynne be safe. Have a blast. You all amaze me. Mae. Dinner sounds lovely. I'll start driving now, maybe I'll make left overs by Sunday night lol just in time for movie night!
MJH~ love the energy with the grandson. So agree. You ladies are something else. I hope I can re gain my strength after this surgery. I'm not going to get the lift done for a while. It's out patient but I need time to rest! Surgery is like a job.
Keetmom❤️❤️Enjoy your time with your friends this weekend.
Much love ~M~
Hi Magda
Hi Divine~I love the beach 🏖 idea our own umbrellas and drinks 🍹 It would be so nice !!
Bigbhome, Gracie,Chelle,Nan💔.
Runor hello. Blueshine,Beatmom,Holmes,sunshine,GP, southern survivor....Tanya..hope the port is settling in and healing good! The Lynne's!, Robin. Hope you and Willy are doing good!..Minnie~ I am the same way for sure!
Lynnwood, Chicagoan, hope you have a good weekend
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MJH, I was married to XDH1 at the time, we were actually newlyweds at the time, just after Labor Day 1973, and we found a rental in Camden, with a bay view, and we were there for a year. We bought a small farm, about 6 acres, with a house that had been built as a school house in 1869, then bought by a family, they had a chicken farm, and it stayed in that family until we bought it from the last surviving family member. It was in Warren, right at the top of the hill from the Oyster River. My XDH1 worked for a builder of wooden boats, the real, old fashioned built from scratch 30’-40’ sailboats.
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Magda, your words about peace and contentment, in the face of everything, it made me feel proud of you. I feel your words are very heroic and I respect that. I also feel you hold out realistic hope that we can still find an island of steady and calm even though things aren't perfect.
Hi all. I read. I cheer. I hurt. I commiserate. I need to be here sometimes.
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Runor~ Hello darling!! I woke up fed the dogs went back to bed until ten o'clock, now I am sitting at the dispensary, last time I was here it was ok. The time before that, it was an hour and a half wait to get inside. I'm so hoping the other ones in this area open soon. Really sucks, way to packed. People that come far distances to get product. I live ten mins for ours locally. But I can say. Being there for that long is not easy shifting my seat so my spine doesn't feel the pressure toomuch. Standing then sitting standing then sitting! Being sick really blows the Big ole big one ! Nice to see you! My friend. Much love ~M~
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it was sunny. But freezing winds. Like what the heck. It's april 21 for Christmas sakes. I had my winter coat again with my fur lining, I don't mind wearing it. It's comfotable. But you have to lug it around when you wait. Or you get too warm. The wind is whipping outside even now. The poor flowers are struggling and the birds can even fly because the wind just keeps them in one place. Looks kinda funny but I've had enough of this cold/crap. But I don't want it to get too hot too fast! Hope everyone is well.
Hello Mae~~~Gracie~~Tanya~~The Lynne's~~Bigbhome~~Minnie~~ Holmes~~Grannax~~MJH~~honey badger ~~Divine~~Keetmom~~GP~~Boo!~~Southernsurvivior~~Magda in her new home 🌷🌷🌷🌷~~Robin, hope you’re doing ok....~~Runor~~Lynnwood~~Chicagoan~~I am sure I’ll be resting an another name will Pop Into my mind. Nan💔.. Chelle. Love love you!
Sleep well ladies. ~M~
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Hi Micmel❤️❤️❤️ Cold here too..50’s but we have beautiful, blessed rain!!! We were in a very serious drought and have had prairie fires for weeks!!
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Hi Gracie🌷~ Hope you're doing well this Sunday morning. I would rather sleep personally. But we all must awake sometimes. I just find I don't worry when I am sleeping. So of course, that's why I'd rather sleep. I have to start my ibrance again tonight after a month break. One thing I realized was. It's wasnt like a break at all. The surgery fatigue took right over. So I suppose if anything I won't feel too much difference. All I do is want to sleep.. if I'm tired I'll sleep. I took two naps yesterday, and one was at 430 in the afternoon! Right back asleep at 1100 again. I seem to feel better at night. Odd. They should call it sleep brance. I am just thankful I have something to take! I just hope the anastrazole holds me ok until I get back onthe ibrance. I have scanning and blood work coming up in May. Ugh. 😑 here we goooo again. XGeva shot. Etc... 😔 that this has happened to us. Sometimes I still can't believe it's even happened?. Have a good Sunday! It's still a tad chilly. And breezy! Hope everyone is safe and warm! ~M~
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Oh gosh, I wish I could sleep. Five hours a night right now is average. Sometimes only two. And I’ve found if I sleep during the day I’m up until four or five am!!!! For a while I was sleeping really late but that is gone!!
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It is really crazy. Your body never knows itself any longer. It’s a terrible hell. I think of you everyday my friend.
Somedays I don’t know what I would do without you all. I know the phrase misery loves company. But it’s honestly true. 😔. Much love ~M~.
I’m just depressed because I have to start the medicine again!! 🌷🌷🌷 🌹 🌺 🌸 spring. I’m worried about my allergies now! Ugh!
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