Life does not end with a stage IV diagnosis (really!)
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I love the fall foliage! DH and I went to New England in October the year b4 our daughter was born so we could see it for ourselves. That was our last BIG vacation b4 baby. It was fabulous.
Lita
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Awww, Mrs Divine, I'm so happy you have had a nice October. Glad you liked Gatlinburg/Pigeon Forge. We go there at least 2 to 3 times a year, in fact we will be there this Thursday for a long weekend. We love to be there during Halloween. Two years ago we were there for Halloween, we woke up to over a foot of snow and we were on the top of the mountain, lol
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Kandy, how great that you visit that area of Tennesee so often. We were told Halloween is one of the busiest times there with leaves in fall splendor and bumper to bumper traffic. I really enjoyed the fall decor that was throughout the town, at every venue we attended and in Dollywood. We were also told of the beautiful decorations they have at Christmas time.
I especially loved the many adorable "pumpkin people" displays at Dollywood.
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Seeing it at Christmas time is a must. Plan a trip.
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Oh Divine! I just love Brandywine Falls (and the rest of CVNRA). I went to college in Akron, so that was where I went on many first dates! It was a test...if they couldn't appreciate the beauty of the out-of-doors they were out! I remember going there with one guy in the spring before the snow and ice had completely melted. He insisted on trying to prove that he could cross the river when it was half frozen and then had to walk back to the car with wet feet. He didn't last long.
I've never been to Pigeon Forge, but my aunt and uncle used to live there and raved about there being so much to do. I agree, Dolly Parton is much more complex than her public image lets on. I hear she is very generous and kind as well.
Oh boy...Miles in the pumpkin. Too cute!
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Caryn, what an adorable picture of Miles!
You and your dh look good in front of the falls, as well.
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Just returned from a wonderful nearly three weeks in London and environs. We've been there many times, so we explored places we'd never had the chance to before, visited old friends, and saw a lot of theatre including an brand-new musical, "The Pacifist's Guide to the War on Cancer." The latter still needs some work, but is a brave and inventive piece. Since it was developed collaboratively with input from those who have had and are living with cancer, I found myself nodding, laughing and wincing at many points.
London is undergoing a great deal of construction/destruction/renovation. There are cranes and barriers everywhere, not to mention horrid traffic, but the area can take a bow for its superb public transport. All in all, what tired me most was pounding through the Underground tunnels and up and down the stairs. However, once we entered the cars, younger people (often women) invariably offered us their seats. We also changed hotels four times during our travels, which was necessary, but not ideal. I like to settle into a home base if possible.
I hope this post encourages all who read it and affirms that Stage IV is not "the end," even for slowed-down, aging Boomers with other ailments like arthritis.
Now to do the laundry, which should take me most of the day!
Tina
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Tina: Glad you had a fabulous trip. Hoping to do some traveling myself once we get these mets knocked back a bit.
Lita
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What a nice trip Tina! You definitely encourage me!
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Tina, sounds absolutely delightful. Congratulations on such an endeavor and for enjoying it thoroughly. I am especially thrilled that you have encouraged others to travel regardless of their cancer dx.
Welcome home.
Amy
PS - would love to see photos!
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Celebrated Halloween at AK State Boofest (Brewfest) with my husband, aka...Steve Trevor...Wonder Woman's boyfriend. Felt weird to have hair again after none or very short for the past 3 years. My spirits were down after the scan results, progression and legs/hip pain so it felt good to get out even for a couple hours of normalcy. Happy Halloween!
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In need of encouragement. Next pet scan is not until December 5th with results on the 8th. Already cant sleep at night. Anxiety all day. Cant eat or focus on anything. Very fatigued. Even showering and dressing is a chore. My last ANC was 1 and the next labs to be drawn on November 10th. I feel as though I am living scan to scan. I have heard 2 to 5 years is the usual prognosis and then the nurse practitioner states " we treat this as a chronic condition, kind of like diabetes". (which I also have). Last pet scan this summer showed bone mets had turned to scar tissue and there was no new activity. I don't know why I have this overwhelming fear. I am on an anti depressant and have Xanax as a back up but still feel terrified. What if? What if? what if?....... I applaud those of you who can continue to work and lead a normal life. I guess I am not as strong as some. It doesn't help that I was a geriatric nurse for many years and worked with many hospice agencies. This has made me very aware of the process of death and dying . I know exactly what death looks like and the processes I will go through. So many days I think I should take the easy way out, however, that would only serve to hurt my family and friends (not to mention my life insurance wont pay). I am just entering my second year, I cant imagine what I will feel like after 5. I have lost 45 pounds this year due to stress and no appetite. I am tired of being afraid and lonely. Any encouragement would be appreciated.
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lissalou,
I just passed the 5 year mark, and I wish I could impart some great wisdom. Since you're already on antidepressants, counseling might be helpful or a "live" support group. For me, stubborn thing that I am, I just decided not to fritter away my time. Whether I have 10 days or 10 years, I want to live well. I did have a few very special things to leave for including the birth of my first grandchild and my younger dd's wedding. I also planned trips and activities to look forward to. This worked for me but I am optimistic by nature. Explore any and all activities, big or small, that bring you joy. The scans? I worry too, but it never changes a darn thing
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First of all, I want to say Shutterbug, how completely cool you know of Brandywine Falls and Cuyahoga Valley Natl Park. I did not know you attended college in Akron! Many kids in my area attend there. My sister and I have been trying to get together in the fall for the past two years to take the scenic train ride that runs a three hour loop through the park, but our schedules have not panned out, so I went for the day drive with dh. Maybe next year I can take the train ride.
Lisalou, sometimes it is a switch in thinking that helps get us on a better track. I have learned to look at it as living with cancer, not dying from it. Like exbrnxgrl, I am 5+ years dealing with stage iv. The first year and a half was rough. I just kept making plans to do things I really wanted to do. Sometimes I would plan for the next week or month, sometimes for the following year. And then learn to live in the moment.
My suggestion is do something completely out of your comfort zone. You need to get your mind off bc, so doing something new means you have to use your thoughts to learn new things. This is sometimes why people zipline or parasail or skydive. You have had the shit scared out of you by the bc diagnosis, now you need to do something equally shocking to your system but in a positive way. Then, after you do that one thing, think of the next thing you are going to do. Some people will train for a marathon, climb a mountain or take a camping trip into the wild outdoors. I know exbrnxgrl went to Sydney Australia and climbed the huge Harbor Bridge.
I have also done more activities closer to home, visiting places of interest within an hour or two from where i live. It is a steady diet of trying new things. Sometimes I might even go into a new grocery store and check out new foods I never ate and buy some new tasty thing to try.
Sometimes retail therapy can help. A new coat or piece of jewelry can lift the mood.
I also love listening to some great tunes on my ipod. Getting out and taking a walk, even if it is 15 minutes every other day. I like listening to my ipod when I walk. A walk can help clear you head.
Journalling also helps. Every morning, write three pages of whatever you are feeling. It helps to sort out your feelings and sometimes you get in touch with feelings you did not recognize were there.
Consider entertainment, too. If you can get to a show with a good stand up comic, do it. I saw Jerry Seinfeld and literally laughed for over an hour straight at his show, as well as seeing several other comics. A rock concert, a good movie, a super good book, binge watching some fabulous shows on Netfix or even a terrific addicting game on the ipad have helped me lift my thoughts away from bc.
And ask yourself what is some thing or some things you really want to do. Then make plans to do that. Add more fun to your life. You are allowed to do that.
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And another problem with implants... They do not press flat so I am having a tough time achieving the conical torso of my Anne Boleyn style Halloween costume. Problems, problems, problems...
Happy Halloween
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Lissalou: If you live in California, you can take a somewhat easier way out thru the "End of Life Options" act that was just signed into law. You do have to jump thru a lot of hoops to get the barbiturate cocktail (2 outside drs have to certify that you are 6 mos away from dying, get a psychiatrist to certify that you aren't doing this because you're crazy, write a letter, wait out the 14-day waiting period, etc.), but my dr assured me that I would NOT LOSE my life insurance - it's part of the law. You're going to die anyway, so you're just accelerating the process and pushing things along a little faster. I live in California, and it gives me great comfort to know I have this option. But I don't know if I'll use it yet. It seems like a lot of work to me. If you refuse food and water, you'll go in about a week or so, and won't have to deal with the 14-day waiting period.
Exbrnxgrl offered up a lot of suggestions, but it's STILL hard to deal with the ups and downs of this disease. For me, I journal, pray, and schedule weekly chats w/my brother who has congestive heart failure and COPD. He's been living with it for years, and should have died three times, but didn't. He offers a lot of insight and support. I'm in God's hands, just like my brother is. It's hard for me to do physical stuff because I have so many mets to my spine, compression fractures, and degenerative arthritis. I have to limit my standing, walking, chores, etc. My life will NEVER be the same.
A few thoughts about treating Mr. Cancer like a chronic illness: Cancer is not like diabetes where you just check your blood a couple times a day, pop a Metformin pill or give yourself an insulin injection before you eat. It's not like AIDS where you swallow a handful of pills and capsules to keep yourself going. Cancer is a different beast altogether. We all know if you have St IV, it's an endless grind of blood draws, dr appts, bone infusions, CT/PET scans, Aromatase Inhibitors, Xgeva shots, and chemo IV drips. A little more complicated, no?
I have friends who've lived and worked for decades with AIDS. My m-in-law and f-in-law both had diabetes, and it really didn't impact their lives that much once they got the diet and exercise aspect squared away. Cancer is not so easy. We have to deal with the list above AND miserable side effects: Debilitating fatigue, diarrhea, crippling joint and muscle pain, nausea, vomiting, hand/foot syndrome, frustrating neuropathy and neuralgia, dry/itchy/stinging eyes, hot flashes, chills, mood swings, loss of appetite, etc., etc., etc.
Of course, some people have an easier time with St IV and the side effects, but some of us have an awful time. Some women actually have the energy to work while living w/St IV. But some of us have had to file for total disability because we're in pain ALL the time, we can barely move, we no longer have any feeling in our finger tips, we feel like zombies because we're so fatigued (even sleeping is wrought with frustration), and we have to traipse around in Depends because it's hit or miss with Imodium.
For some women living with cancer is no biggy...it is a manageable annoyance, and they've created a "new normal" for themselves. But for others the "new normal" is essentially a "living hell," and death is quickly seen as a welcome release from unmitigated suffering.
Indeed, there is a price to be paid for all the infusions and pills that prolong a St IV cancer patient's life. It takes a tremendous toll on the body, and sometimes the treatments are as deadly as the cancer. Some of the side effects never dissipate, and the neuralgia never goes away. So even tho drs have proclaimed St IV cancer to be a manageable, chronic illness, we must never minimize the pain and suffering that so many men and women have to endure for the rest of their lives.
Lita
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Well said, Lita
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I completely agree with everything you said Lita. Referring to it as a chronic illness does take away from all the awful things we Stage IV people go through. It also removes the threat of death which makes me think less money would be given to research. I am happy for those who can go for years and years, those who are able to work and work out but a lot of us can't and it can be hell. We all do our best, but as Lita says, it is neverending with the drugs, scans, SE etc. Life does not have to end, but we have to be realistic yet hopeful for a long run after diagnosis. It really is a fine balancing act that I am starting to get used to.
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lissalou,
You've been given many points of view on the different ways stage IV touches lives and a few suggestions on how to help with your stress and anxiety. It's clear that your professional experience plays a big part in your perceptions. How are you physically? Your dx line is not visible, so ti's hard to know if your surgeries or tx might be adding to your anxiety.
Yes, I would venture to guess that the majority of stage IV women have to deal,with an impacted and diminished quality of life. But for a small number of us, it's not been too bad and we do lead fairly normal lives. Though not quite like diabetes, it's been quite maneagble for me. If you're physical state is stable then please explore further help for the mental/emotional piece, so you can enjoy life again.
As always, I feel for the sisters who struggle physically through the ravages of this disease and do not discount their suffering
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Lita: We all know we are terminal. This is the place to learn we can still go shopping, travel, love during the time we have left. We may have ten months or ten years but we can live during whatever time we have. I am jealous of the outliers but I am so grateful to them for helping us. I was just diagnosed so I feel your agony, believe me! I am so sorry you have so much pain!
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Shelly, you look fabulous.
Lissalou, I've been in that funk (as I call it) a few times, and have learned to get on the phone. I have several friends and an ex husband who can listen. One of the female ministers at church will pray with me and our favorite prayer is, "fuck cancer. Amen".
Keep breathing, consider meditation. And all the other things that were suggested.
Good for you for reaching out. I'm so happy you did.
Love,
Patti
Ps I haven't yet heard about the results of the brain MRI. Fingers crossed it'stoday! And I am having lunch with a friend.
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Sounds like a great trip Tina. Would love to see some pictures! I've never really been out of the country (except to Canada, and when you live 50 miles from the border, that doesn't really count!)
Sorry to hear of your progression akshelley. You rocked that Wonder woman costume like the Wonder Woman that you are!
Lissalou – I'm sorry you are feeling down and scared. We all find ourselves there from time to time, and it is a very common reaction around scan time. It looks like the ladies before me have given some wonderful advice. What helps me is to remind myself that I may be one of the lucky ones who have been at it for decades…and I want to look back and see that I continued to live and wasn't just waiting to die. I try to focus on the things you love. I find that focusing on the positive leaves less room for the negative to take hold. I always say, let yourself feel what you feel, and then try to move back to a more positive space. Fingers crossed that your scans are good and you will feel better afterward.
Divine – We did the scenic train ride a few years ago and I have to say I thought it was a bit of a let-down. Not much to see except for trees whizzing by. If you do go, try to sit in the car with the bubble on top so you can see ahead and behind and not just what is next to your window.
Caryn – we need Anne Boleyn photos!
Sattipearl – fingers crossed for good brain MRI results for you!
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Haha Satti, Love the prayer! I may adopt it....best of luck on the scans! Good advice Shutter.
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Brain MRI results: stable abnormal (my favorite phrase in this domain. It's the next best thing to NED)
As a nurse friend said, when she read and interpreted the results for me, kinda boring.
I'll take it!
Thank you for your support and words of encouragement.
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Well, I'm in Maui! Take that cancer ##<<sandy beaches, ocean breezes and family. Not today. Cancer. Shove off
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I am reaching out to one of these threads and this one seemed the most hopeful. I was diagnosed last October 2015. I had two forms of chemo and still get Herceptin, however my cancer does not respond very well to chemo. I had surgery and got blasted with radiation 38 rounds. I had my petscan on Thursday and found out I now have cancer in my right lymph nodes. (Opposite side) so here I am one year later, stage four. I have 2 kids 12 and 10 and Im trying to keep it together. Waiting on biopsy to know what we are looking at. MO said they don't usually operate at stage 4 but usually use drug therapy. I want it cut out or radiated. I'm petrified the drugs won't work. I am desperate for advice on how to get out of this emotional pit. I know nobody is gaurenteed tomorrow but all of a sudden I'm way more aware. I want to be here for my kids. I need hope
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Twirp26: So sad that you find yourself here with us St IV gals. But DO NOT lose hope!!! There are so may women who have been living with St IV for years. Don't go by the stats on other websites that say 3-4 years average. There are better Tx now. Xeloda (capecitabine) has worked wonders for some women, bringing them very quickly to NED.
Yes, they don't usually do surgery because "the toothpaste is already out of the tube," so to speak, and they just use chemo and radiation as needed. Have you had a CT scan yet? They will probably want to do one at some point to see if your bones or any other organs are affected. But be of good cheer. Some of these newer chemos can really shrink the cancer down and give you a fairly decent quality of life.
Prayers are with you,
Lita
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thank you Lita. It's amazing what words of hope can do. I need a ct guided biopsy because they are deep but I had pet scan. I had an opacity on my upper left lobe of lung but radiologist said he believed it was radiation related. Nothing seen on any other organs as of now. My MO said we will keep an eye on lung. Starting with biopsy and will get a plan from there. I'm 44 and have been on an ovarian suppression and AI but for only 2 months. My cancer is 80%estrogen pr- and her2+. I'm a loose canon right now. Cry at the drop of a hat. Didn't this happen to you? Will the tears stop?
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Twirp, Lita is right about the surgery. Once you hit stage IV, it is not usually done. I am so sorry you find yourself with us, great people are here though. The drugs you will get will NOT be as strong as anything you would have got when you were dealing with the first dx. Also, I notice you are Her2+. There are many drugs that can treat you for a long time on that, not all of them are chemo. Lots of great drugs, tykerb, kadcyla etc. The side effects on those are quite doable. As a fellow new stage IV, you will go through cycles of how you feel about your dx. First thing is just breathe, let your onc set up a treatment plan and go from there.
As far as hope, there is always hope. Don't listen to survival stats etc. Throw those out the window. Go day by day. Stage IV does not mean you are dying of cancer, you are living with it. Good luck, talk to us anytime, if there is a lot of anxiety, get counseling or even look for drugs to take the edge off. That can help and nothing wrong with it. Lean on family and friends, let them know how they can help. Good luck.
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Twirp26: I still cry at least a couple of times a day (not for myself, but for my family and dear friends who will eventually have to go on w/out me, and for all the dear women who are suffering from this miserable disease more than I am), and it's been almost 7 mos since my Dx.
Mara51506 has some good advice, too. They had me on valium to cope with the emotions for the first 2 months. I don't take it any more - except for when I go in for scans. Those are always challenging for some of us. I try NOT to be anxious about them....will I have progression or won't I? But it's hard, and that's why I gotta have a "mother's little helper" for that sometimes ;o).
It REALLY sucks that you got Dx'd as the holidays are approaching. Go ahead and FEEL your emotions. You are entitled to them. Find constructive ways to take out your anger, frustration, and grief. Nobody ever wants a recurrence, but it's a sad reality when dealing with Mr. Cancer. Unfortunately, you are not alone. Even some St I and St II women have to deal with a St IV recurrence several years later. It's like having the sword of Damocles hanging over your head.
Well, Damocles' sword has already fallen on me, ha ha. I was Dx'd right from the gate w/St IV. It's a "new reality" that I'm still trying to adjust to. But we have great women here who are helping me navigate thru this mess.
Prayers for comfort,
Lita
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