Stage IV MBC Fitness
Comments
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z,
Thank you for your kind words. Itruly need support
Right now. So hard to face this alone. Trying to stay strong but it's very overwhelming,
Thanks again , Paula.
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((((Paula)))) It is difficult to stay strong especially when we have no idea how much strength will be required. But you really have mastered so much until now so I think you will find the strength you need again. And we are always here for you.
DG, wish we could twirl around in the dark dancing together. Nkb, You will slowly build up stamina.
Am back from fall break vacation. DD and I were in better shape this time than the last time we biked without e-bikes.
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Paula, we will support you along the way. Progression is scary and you will make it through. I also have two lesions where the tumour was before. I will undergo radiation to those spots are. I will walk my stress away and send you my thoughts. Please know, when I got the news of my own progression, I was extremely scared and cried a lot. Give yourself time to feel it, cry it out, punch a pillow even. Be angry at the cancer. It may help to release some pressure.
I hear you on not having people to tell the scared feelings to but I do talk to my social worker if it feels too much. Once you get through this bump, you will feel physically better which also helps your overall outlook. Hugs
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I have recovered from yesterday’s massive activity. I have noticed with palbo/fulvestrant something similar to when on chemo where I suddenly feel a need for calories. I eat half an energy bar and feel better. I assume it is low blood sugar, but, have no proof.
When only on arimidex r off Meds or before cancer I never had this. Anyone else notice this?
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Paula - How do you feel today?
Z
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Paula, I'm so sorry to hear you have to deal with brain mets now. I agree that your healthy lifestyle will help you as you face WBR. You are not alone, at least not in spirit. You don't even have to be strong all the time, just show up.
That is interesting, Nkb. You are tuned into your body and I think you are wise to listen if it tells you to eat something. Just make sure your energy bar is made of good stuff. I usually carry nuts and dried fruit. I just feel it would be unwise to push myself the way I used to with getting too hungry or too tired, if I can help it.
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Paula-Hate it that you received this news! WBR has been a wonder treatment for many. Being fit will make healing happen more quickly. Is this our reward for success on other treatments? Welcome to the brainclub :-/
DId a LONG hike (five miles) yesterday...missed my turn and definitely used the poles to stay up on the way back Barely moving today. Back at it in the morning!
Gotta keep moving!
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Paula, I'm very sorry to hear the news of the brain lesions. I wish I could be there to give you a hug. Know that we are all supporting you and cheering for you. Keep us updated.
Didn't get much walking in today, but I did do a rather intensive kundaliniyoga practice today which I think was plenty.
DeAnn
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I went for an almost hour long walk around the block today. It was very gray and humid but I still enjoyed myself. Helps me manage my own stress about my new lesions on the old brain tumour location. I don't like it, but I can do this phase of treatment. Still NED from the neck down for which I am grateful.
Thinking of you Paula and illimae as you get ready/undergo your treatment, Z, I am thinking of you too.
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Paula- so sorry to read about your brain Mets. I hope you have a friend who can be with you during treatment. You said you were alone which worries me!
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Thanks Mara, I appreciate it
I've been getting all my steps in this week as next week is full of appointments and I may not have as much walking time. Feeling good though!
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Illimae and Mara, sending positive thoughts as your treatments begin.
Iwrite, using poles is an upper body workout.
Enough resting today for me. I reallly need to get out on my bike...
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Hello ladies
Thank you all for the kind words. Dizzy vision problems, will see dr tomorrow then have mask made and start moving br on Thursday, I hop I can rid if this dizziness and vertigo.
Hugs to you all,
Paula.
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Paula - Thanks for the update. I am thinking of you all the time. It sucks until it is over. Nothing good about it. We're here for you. Keep up a simple gentle and calming exercise routine as best you can. A 20 minute walk has huge benefits.
>Z<
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Z,
Yhanhs for thinking of me. Do most people die of this, I have a lot of lesions so scared
Paula
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Paula, the first word we all zoom in on right after the bad news comes is "incurable"... HOWEVER, COMMA... it is also called "treatable." Try to loosen your grip on that other big bad word and instead grab hold of this one, and don't let go for anything.
Many of us are living with this for a very long time. I have been at this for over a decade now, with innumerable mets in just about every bone of my body (and a few that have popped up elsewhere from time to time just to keep us on our toes), and I'm still living a pretty darn good life.
It is normal and reasonable to be scared. We all know fear intimately. But at some point, you will find your grit and then you will get busy living. You have better days ahead. Be kind to yourself and fight for your joy.
We are all here for you.
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Juliane, I have many lesions on my brain different than bones
Paula.
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It's not a great position to be in. The treatment is not what anyone would choose. Being scared is a frank response to the reality you face. Be scared and angry and depressed and all those things.
People do die of this of this but my expectations is that you will come out of this well with the mental strength of a ninja. Many people do get through it. Many people in the stage IV forum. Unfortunately, there is no way through but through it.
Please keep updating us on treatment, how you feel, everything. And it really can't suck more than this ... so things will get better.
>Z<
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Paula, SusaninSF had a headful of mets approx 2 to 3 years ago. She went through WBR herself. She is doing well and active 3.5 years or so on. You can see her most recent post within the past month or so on the brain mets. It is difficult not to imagine dying when a brain met (or more) show up, much the same as I would imagine a person would react to progression in the body. The best thing you can do for yourself is take one step at a time. There is no way to simply just relax so worry about one step ahead, then you do whatever is next, and so on. No one can say you won't die someday BUT with treatment, you can go for years and years. None of us can predict how long we have but we can hope for the best and be as stubborn as we can. Do not read statistics etc. Be your own patient.
All of us are supporting you now. Try to have hope and ask for help with the dizziness from the onc in the meantime. Hugs out to you and everyone dealing with treatment or progression, including myself.
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Paula- the hope is to change MBC into a chronic disease until we figure out how to use immunologic drugs to hopefully cure.
Walked 6 miles on cobblestone streets today in- Paris! Beautiful day in the 70’s. Carb loading is possible on almost every block!
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Nkb - Way to take advantage of the carb loading opportunities. I am in Japan where the food is so foreign I approach each meal with some trepidation and sometimes leave with very little food. We will take a couple food tours this week and hopefully get some explanation and guidance. However, I have lost some weight which is good.
Paula - thinking of you. How are you feeling.
>Z<
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nkb, that's a lot of well-deserved steps. We are enjoying the same great weather.
Z, yay on the weight loss. Hope you can relate more to the food though as the days pass. Would love to hear more about the food tours.
Lulubee, my fellow 07er, love hearing that you are still living a pretty darn good life. It's the best revenge, isn't it?
Hugs to Paula, Mara and Illimae. Hope you feel our love and support.
Did a short bike ride and some Zumba. I should go for a longer ride today as it's again a gorgeous day.
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Mara, Illimae - you guys sound so well I forgot what you are dealing with. How are you doing? Obviously, very strong mentally.
>Z<
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Thanks ladies! I'm doing well and had a great week for steps 70-80,000/week recently. Tomorrow is the gamma knife, which I expect to be just fine and I've been told I can go back to work Monday and do another 5k next weekend. Plus, I get some extra time with DH (quit his tour and flew home), so that's been nice
scans show me as all good everywhere else.0 -
Illimae - nice work Illimae. You are an inspiration. I'll be thinking of you tomorrow.
>Z<
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Time for me to get started here. Since getting my MBC diagnosis in August, after 9 months of treatment and surgery, it took about two months to get life and family adjusted to the new realities. Now I'm here for as long as I'm here, and I need to get more active. I walked throughout treatment and surgery recovery, but stopped doing anything with real exertion back in March because my heart rate was spiking. I did some yoga and wi gong, but stopped during surgery recovery.
I feel like I don't even know how to get started. I've been increasing my walking, but I feel like my body really wants more rigorous workouts. I belong to a gym, so I am promising myself that in the next three days I won't make it there and do cardio 'tiI I sweat and some light weightlifting. I'm posting this here in the hopes of generating some sense of accountability for myself. Good intentions do not seem to be getting the moving!
Thanks to all of you for being an inspiration and a reminder that even in the face of serious disease my body can continue to function well in many ways. You give me hope!
Rose
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snowfall- good plan. I would go slowly with the weights and do more reps with lower weight at first and see how it goes. Injury takes so long to heal.
Z- definitely can relate to the food in Japan. We took a 10 day walk on the old imperial nakasendo way and stayed in rural ryokans and the food literally turned my stomach. Lived on energy bars until Kyoto ( then Italian) weight loss is orten good however.
Walked 6 miles so far today, but, did a major wimp out at the Eiffel Tower- got in the wrong line and could only buy tickets for the elevator up , the tickets for the stairs were in a totally different area and it was enough of a barrier to not do the stairs. Was 720 stairs! Didn’t feel hydrated enough to do it either. Maybe next time.
Sneezing like crazy- hope it is just allergies. Don’t want to be sick here- so many sick people everywhere we go
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I did it! I actually went to the gym! I did 45 minutes of cardio (15 each on elliptical, recumbent bike, and treadmill) and then a round on the weight circuit. NKB, thanks for the reminder to start slow. I did, mostly focusing all on careful range of motion.
I've never loved exercise, but today felt great. I felt like a regular person, not a cancer patient. I felt like I was working cooperatively with my body rather than separate from it. I am heading to yoga tomorrow!
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Good job Snowfall. Sometimes hard to start but you are always glad when you do it.
Did 45 minute walk around my neighbourhood. Also discovered in a nasty way that I can no longer tolerate peanuts. Was violently ill about an hour after eating just a couple. First the vomiting then intense diarrhea about another hour later. Wish our bodies didn't have to be so dramatic. An upset stomach would have been enough. Too bad, peanuts were my favourite. At least I can still have my almonds.
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Lulubee and Heidihill - I was first diagnosed in 2007 as well! I was only considered stage 3 at that time, but as big as my original tumor was and as many positive nodes as I had, I suspect it had spread at that point but just wasn't detectable yet. Took a few years for that, but I had a few years of blissful ignorance, I guess.
Mara - Isn't if funny how some foods can affect us over time. Sorry you can't have peanut butter anymore. Almond butter is good, but just isn't quite the same, is it.
Snowfall - great workout! It does feel good to take control, doesn't it!
llmae and Paula - Thinking of you both as you head towards brain radiation treatments. Hoping all goes well for you both!
Z - Hope you are feeling OK too.
NkB - Hope you are enjoying Paris!
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