Life does not end with a stage IV diagnosis (really!)
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Mara, am so glad to hear things went well and you are doing good. You are an inspiration. I hope you get news of NED.
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That's such great news Mara you go girl!
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mara - awesome news. What wonderful and amazing woman on this thread!
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how about energy? how is everyone getting that back?
I did 1 1/2 yrs of diffeent chemos after being dx with mets. NED 2 yrs now. on affinitor and another energy drainer-not femara.
my mom called me this morning at 0830. she is hour ahead. I think I have told her I have insomnia before. she asks why can't you sleep. I dont tell her the truth-my sister, your daughter is from crazy town, my husband still has 4 mnths before he can move with us. I'm freaken broke. I have a tooth ache and its going to cost a shit ton. I just say its hard to sleep.
I scored a new dentist appt in am. feels like I have worn one of my back teeth down.
I recently dropped my sister from my life. Its complicated. the final straw was this spring. I was tying to get her to agree to sell something we own together..worked on this for over a year. she finally finds out how much taxes we will pay. she calls me and asks if I can wait three yrs. there tax advisor advised them to wait three yrs so they woud pay less taxes. then hangs up
so she either doesnt care that I'm on a limited time frame here or she doesn't know or both. I called my mom up the next day telling her what her daughter did. It kind of also hurts that my mom didn't say anything to my sister. she just said"I wish youll could get along" Once this deal goes through I'm writing her a nice letter. She called me a bitch too
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ah energy or the lack there of.I have been taking tykerb for 3 years now - one of the se is fatigue. I am still working, about 30 hours a week and still have my two children/young adults living with me Fatigue is a daily occurance. I pace myself - I don't think I will ever be back to where I was pre-cancer. I used to be able to do 6 things at once, not anymore. So I pace myself differently - knowing if I have a busy day or late night, I need to expect less of myself in the day following. Sometimes I just make the decision to be busy - stay out late-plan too much etc and just pay the price
Also I try and get to the gym a couple of times a week. The effort can feel monumental - but it does help. Sounds counter intuitive, but ah yes my onc was right.
I nap more often - but I come from a long line of nappers!
Nel
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As far as sleep issues go I used to be a middle of the night reader always woke at two or three and that was it. Now since I've started with the medical MJ it's all good. I sleep like a five year old again yeah.
Wendy
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I am stage 4 and NED for 3 years. Divorced, retiring in a year. So how do I manage my finances? Not the day to day - but long term? I want to enjoy life, but don't want to leave myself broke if I live longer than the average MBC patient? My onc is currently very positive 3 years , same treatment - but I know it could all change tmrw.
How do others make decisions about spending vs keeping money in the bank.
Am I making sense?
Thanks - any input welcome
Nel
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My answer would be the same about the energy. Not sleeping much myself between the decadron and new brain met DX. I accepted that I would not be in bed 8 hours at a time and probably sleep about 2 hours at a time. I make myself stay in bed til morning since getting up would screw that up. I also use some guided meditation for sleep which is relaxing and use baby sleeping music as well. Helps me avoid thinking about cancer overnight at least and was good when had to be in hospital few days.
I did not want to use anything else to try and sleep yet, wanted to save those things for if things somehow got worse.
Fredntan, I am also so sorry about the family issues on top of everything you are dealing with. I understand our families have lives too but sometimes it can feel like we are pushed by the wayside by times. It is a rough balancing act dealing with family and our situations too. I am hoping it smooths out soon.
Nel, you are right. I am with you about the fatigue and maintaining activity. I credit this for my recovery from craniotomy. I did sleep some this afternoon but did manage some stationary bike too. I even went out grocery shopping since I will be having a TON of appointments coming up, wanted to build some stamina toward those.
Wendy, thanks for your kind words and yeah for the sleeping like a 5 year old. That is awesome.
Lynne, thanks for your encouragement and everyone. Have a good evening.
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I find I have to pace myself to have energy. It's not high energy, just steady. If I'm on the go a lot one day, I try to take it easier the next day. I try to work smarter and not harder.
When it comes to finances, I think it's okay to live sightly out of your comfort zone if there is something you want in your life that costs a bit more than you'd usually spend. The first several years after being diagnosed, my family and I took several big trips. I still budgeted for them but splurged, for example, by booking a balcony room on our cruise which cost a bit more. We went out to eat more often and I bought a few more clothes.
Then after awhile it didn't seem to be as important, and I kind of like watching my money in a smarter way. My husband and I cancelled our expanded cable because there were so many channels we never watched, and are saving 50 dollars a month. I could go out and buy a new car, but the one I have is paid off and I like not having a monthly payment.
So I think stretch yourself and treat yourself for some quality things, yet not to the point that it causes an overt amount of stress. It's nice not having to pay frivolous bills.
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Sleep- Melatonin works well for me as well as expending energy on my grandchildren, and starting tomorrow, 22 brand new first graders!
Energy- Well, not as robust as in my earlier years, but I do well enough. Although teaching is tiring, I also feel that it's energizing. I live alone, so when I get home from work, if I want to be lazy, I can (except when my dogs demand my attention)
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I second Melatonin - it's a natural substance, which isn't always a guarantee of safety, but I start with 3 mg and go up to 5 if needed. Works really well and no side-effects.
Am
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Exbrnxgrl...well said!!
We are here for each other. Good days and bad! Live life ladies! Live life to its fullest!0 -
I saw the endocrinologist today (because I have nothing better to do the day before school starts 😜). He did an ultrasound and said the growth is very tiny and probably nothing. I did, however, have radioactive iodine therapy some 15-20 years ago, so therein lies the concern.Biopsy next Thursday, sigh...
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Summer sunset in Michigan with the whole family. Enjoying every moment:)
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Georgeous photo Kathryn, thank you for transporting me to the shores of Lake Michigan, whenever I desire
Thinking of you today Caryn as you meet your 22 new charges who, within a few short weeks, will be your budding new pupils who've wrapped their little hearts in the palm of your hands.
I've never had a job that lets one "start fresh" but it's exciting to think of the possibilities.
This summer, I met a little girl who turned 10 on Sunday, turns out she's been visiting from Israel and she's got a huge personality who connected with me practically upon introductions. I think life for her at home is troubled and challenging so the care-free days in Minnesota are the respit she's needed. She goes home soon, but not before I can finish celebrating her 10th birthday with her favorite things, like Kosher Sushi with spicy tuna and jewelry. My point is, meeting Bracha, feels a bit like 22 new students full of wonder and hope. I'm sure you will find those couple of "special" personalities never to be forgotten in your classroom, again this year.
Happy first day!
Amy
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Amy,
Thank you so much. That was one of the kindest, most thoughtful posts anyone has ever written to me. I deeply appreciate it.
Yes, it is wonderful to start fresh each school year, especially if you've had a challenging time the year before. Still, regardless of how challenging a school year has been, the memories and satisfaction immeasurable.
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I want to thank all you ladies for being here!
I'm about 4 mos. out from being newly Dx w/ St IV w/mets to all vertebrae in thoracic and lumbar area (with compression fractures and spinal compression) as well as pelvic and hip bones, ribs (w/fratures, too) and tumors on kidneys, adrenals, and bladder. Gees, and I thought it was just arthritis! "You have a long, difficult road ahead of you," said the dr who did my core biopsy as she hugged me when the procedure was over.
Even tho, as I posted in the Bone Mets thread, I've already picked out the music for my memorial (and I'll probably select my own urn, too because I don't want to be in a cardboard box for all eternity, and I don't always trust my DH's taste), I realize that I probably won't drop dead in the next six months - unless I get hit by a bus. But one must be prepared, even while not trying to live too much in the future.
This is by far one of the hardest things I've ever had to deal with, made even more difficult because I had to watch my own mother die from metastatic soft tissue sarcoma when I was in high school. There was no palliative care or hospice back in the mid 1970s. You were pretty much on your own. No grief support groups - heck, no internet with forums so you could reach out to others and share war stories. It was brutal. BUT THIS IS NOT MY MOTHER'S CANCER, I keep telling myself. There are better chemo treatments, targeted hormone therapies, bone infusions, etc. Forty years ago, my St IV Dx would indeed have probably been an instant death sentence. Tamoxifen only came out about thirty or so years ago. Xgeva and Zometa weren't around then, either. Vinchristine (sp?) and Methotrexate and a handful of others were all the chemos that were available. Now we have hundreds of chemo drugs out there. If your cancer doesn't respond to Taxol or Xeloda, you can try something else.
But what happens when your cancer becomes completely chemo resistant? DON'T THINK ABOUT THAT NOW! All that pessimistic rumination will give you palpitations (which could lead to a cardiac event). Ah, so so much to be anxious about. So I really try to live day to day, only penciling in my next MO visit, blood draws and upcoming infusions.
The shock hasn't entirely worn off yet, and yes, I'm very pissed. I couldn't even journal about this for weeks. Once I wrote it down, pen to paper, it wasn't surreal any more. It was a fact. Of course I wasn't planning on dying before retirement age, but this is part of God's plan: Romans 8:28 "All things work for good to those who love God and are called according to His purpose." But at times I miss my job (I'm on State Disability) and will transfer to full SS Disability when that runs out because I can't stand or sit for very long w/all the spinal mets. Yes, I'm home every day (minus dr visits and tests) and can spend more time with my husband and my rescue dog. And I can spend time with you all - my new friends and comrades in arms.
The SEs from chemo are no fun (my poor gastrointestinal track keeps crying out, "Why are you doing this to me?" and my daughter says my feet look like those of a leper because of the H & F Syndrome), but it is what it is. We will all get thru our journey, one step at a time, one day at a time until the sand runs out and we get to go on living in our eternal home.
Blessings, L
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Lita57, I am sorry you find yourself here too. I recently joined the Stage 4 club myself with my brain met.
You are entirely correct, we could get hit by a bus before anything else. I do find as you may as well that having everyone here on the various topics living life and getting thru some serious SE may be helpful as well.
I hope your SE can be lessened in time and you can just be for a while. My best to you and yours. Enjoy the dog, my kitty solves my cuddle issues. These forums are amazing.
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Welcome Lita,
Your sense of humor will go along way towards your Quality of Life. Actually I soooo appreciate a wicked, self-deprecating sense of humor, so much so that I think we're going to get along just fine!
I'm terribly sorry you lost your mother and at such a young age. I'm lucky, I still have both my parents who both continue to treat me as their child...good and bad.
Anyway, welcome and good luck with the current poisons coursing through your body. I hope it gets you to NED in no time...We've adopted him as our local pool boy, NED (no evidence of disease...we have decided to give him a dark tan, washboard abs and a killer smile.
Amy
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Lita,
Welcome -tho like all of us -I am sure you would rather belong ot any other club! Hold on to your humor - it is what saves me most days!
You are right -this is not your mother's cancer. There is much support and information here
Best,
Nel
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Lita, I am sorry you found yourself here, but glad that you found this place to learn and find support dealing with mbc.
You are right, do not look so far into the future. It is one way I cope. It helps to get the end of life matters squared away, but then try to move on from that and be in the here and now. I wish you well. We are all here for each other
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Thanks to all of you! You lifted my spirits immensely.
Yes, Mrs. M, I try not to look into the future too much...and not look at the past either. If I focus on who I once was, it just grieves me. Heck, I had my own commercial painting business when I was in college and grad school. I built scaffolding, climbed ladders to paint two-story buildings, and maneuvered industrial airless sprayers. I even maintained my own car by changing the oil, crawling underneath the chassis to hit the grease fittings, and did tune-ups (my dad was a mechanic, so he taught all us kids how to do that - and being the only girl was no exception).
I did everything for everybody...landscaping, reconditioned furniture, helped friends move. Now I have to depend on others to do almost everything. I can't even grocery shop by myself because I can't carry the bags from the car into the house without hurting my back. I can't be angry; this is the new normal, and I have to accept it.
Toilet Matters: If you HAVE to be married to the toilet, you better get at Toto Washlet with remote control. It washes you front to back and has a dryer, too. You don't even have to touch yourself - hands free! And no more raw butt even when you have to go more than a dozen times a day. Oh, and Depends aren't just for bladder control. I've been wearing them for "wet fart" and sudden accident control during chemo. (I actually use Safeway's brand because it offers full protection in the booty area.) You don't have to be afraid to wear white pants anymore.
L
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Wendy3 - The photo you posted caught my attention right away as I was just in Victoria about two weeks ago! My family and I just got home last weekend from a kayaking trip in Johnstone Strait, and my son absolutely loved the time we spend in Victoria. Such a pretty city! The kayaking followed hiking in the Olympics and on the coast of Washington.
And it was such a great feeling to be able to be doing all the things I love - kayaking and backpacking - and being able to handle it all physically. When I was first diagnosed, I just didn't know what I was going to be capable of, but it turns out life really does not end with a stage IV diagnosis. I'm thankful for this thread for reminding me of that back when things looked bleak. Here's me atop Blue Mountain in Olympic National Park.
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Keep those stories of LIVING with stage IV bc coming! You all inspire me and give me great hope.
My first few days of school have been great. I hesitated to post this, but my last year's class was unusually challenging. So far, this year promises to be much less so. Not that I don't love a good challenge, but it would have worn down even those without bc. I also freshened up my classroom decor, changed the desk arrangement and plunged into our new adopted math materials. And, because it wasn't enough to pilot math materials last year, I will be piloting English language arts materials this year. Lots of work, but great joy and satisfaction at the same time
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DGHoff - great shot of you! I hope they can do something for my spinal mets so I can get back to hiking, too. We have numerous places here in the Bay Area that are great for short to long hikes.
L
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Dghoff yes Victoria is beautiful but a very difficult harbour to do dragon boat racing. Had another regatta yesterday helping out the men's prostate cancer team . Was so fun and at the end of the day we had won another gold medal so happy for them it was their first regatta and they were so excited. I will be sad when things wind down for the winter but I have to say it's been an amazing experience I've met so many wonderful people and made some great friends. So next is outriggers for me they go all winter, as I don't know how much time I have for this sport I need to keep it going
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Wow DG, look at you! What a beautiful picture, and it must have felt great to be there doing all the things you love. I find that Iappreciate my body and how it works and what it does for me so much more than I ever did before.
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The one year anniversary of my de novo diagnosis came and went a few weeks ago. Everyone told me in the beginning that the first year was really hard, but I would start to adjust. The last few weeks have been incredible. I turned 40, which in itself I was afraid wouldn't happen. My husband and kids did a "40 reasons we love you" performance, sharing things they feel about me that I didn't know I would ever hear. Last year I was so debilitated with spinal fractures I couldn't roll over in bed or lift my leg to get into the car. This weekend I drove alone from Philadelphia to northern New Hampshire to show my kids their heritage dating back to the 1600s, including the one room schoolhouse my grandmother and great grandmother attended. And yesterday I hiked for hours. Life is so different with this diagnosis, but some days are just so sweet.
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DG and Bluefrog, your photos are breathtaking.
Caryn, good luck with the new school year, your students and their parents are lucky to have you
Bluefrog, you say it so well, life is so different with this diagnosis but some days are so sweet. What a wonderful 40 th birthday for you.
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Bluefrog- your post put a big smile on my face! Happy birthday! What a lovely gesture from your husband and children. I'm glad you were able to get away and to enjoy all the things you love. I feel much the same way, having just celebrated my 2 year metaversary and feeling confident that there will be a 3rd. May we all be blessed with sweet days!
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