Stage IV MBC Fitness
Comments
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Snowfall - I am glad you found us. Probably the most important thing about exercise is the mental benefit. If I am out-walking running or lifting half the people in my gym, as is usually the case, then am I really sick? Not really. It's important to see ourselves as well. Nice work. Keep it up.
I got my 12K steps touring the Tsijuki fish market in the pouring rain this morning. I discover that the waterproof lining of the 20 year old rain jacket I brought with me has largely dis-integrated, turning my raincoat into a large sponge. This is what happens when you live in the desert for 15 years. Lying in the hotel drying out and then off to the department store for an umbrella and a raincoat.
DGHoff - Rashes and diarrhea/constipation present but subsiding. Not interfering with enjoying Japan at this point, anyway.
Mara - reminds me that during both periods when liver mets were growing (pre-diagnosis and again this fall) I developed am extreme skin sensitivity to lotions and sunscreen and detergent.
>Z<
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Been getting in the steps this week with some gorgeous fall weather! I'm sitting outside this evening by the fire table taking advantage of the warmth. I had my herceptin/perjeta treatment yesterday and xgeva shot so I've got the drippy nose thing and slight headache going on, but that's normal for me day after treatment. I did get out for yoga and a walk today and Ialways feel better after moving. It never fails me.
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DGHoff, speaking of yoga, did I miss the poses or instructions you had mentioned before for those of us interested but not actively practicing yet? No rush, if not, I just happened to remember the topic.
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DG, you are so right, moving always feels good afterward.
I walked more than an hour today, feels good myself.
Hope everyone else is able to do what they want to do.
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I went to yoga today for the first time since starting chemo in January. Felt great! Thank you, everyone here, for being such great examples. You inspire me!
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walked through IKEA today
. Hope that counts! My friend of 35 years is here for a week. She went to the neuro onc with me today. He thinks it is neuralgia in the fifth trimenengeal nerve rather than Mets. Hope that is true...Tomorrow is hiking in the mountains, pain or no pain. Only 10 more days in the Rockies
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iIwrie, could use more often positive, I am so ascared and alone don't know what to do, had my maskfittedwill start radiation next week.
Paula.
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Paula - what you are going through is scary, I am proud and impressed that you are showing up for treatment ... getting the mask fitted, arranging everything and executing this daunting task is extremely brave. i don't see any hesitation despite the difficulties. are you eating okay? sleeping okay?
any energy to find a support group locally with actual bodies you can cry on. that would take more bravery than i have. i respect your decision to rely on a virtual support group .... and we're here. but there are some ladies nearby who've been through this and are ready to help you as well. whether that will help is your call ...
whatever you do, you are never alone. i was just thinking of you and so glad to find your post when i logged in.
praying for you and illimae and mara ... that you guys will be embarrassing me with your exercise routines when this is over. Oh. Wait. You already are. You guys are all crazy strong.
Keep moving ladies.
>Z<
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Z,
Tanks for the kinds words, taking a lot of steroids sheep won't be the best have a good appetite yet, but so hard face this DD will be coming home to take me to some of my appointment S. Don't know what else I can do cry a lot, not ready to die, but I know it's coming .
Paula
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Paula, I second what Z has said. A live support group or social worker can help a lot While brain mets suck, treatment is much better than it was. Contrary to a lot of scaremongering out there, WBR is a good option to use with our aggressive cancers and should yield a good qol when done. When you are amped up on steroids, the fear is dialed up. I understand your fear, having been through it. Once you are treated and the steroids are done, sleep should return. If you can take one, I still recommend an antianxiety drug to take the edge off. This phase of treatment will pass too. Once your dizziness is gone, start walking again. It helped me a lot, even when I was on them. Endorphins will be good at this point to modulate the fear. I still recommend to walk while listening to music that makes you happy. That is how I am dealing with my progression.
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Mara,,
What is the dizziness caused? Don't have support group, likve in a a small town; that is the hy I look to you girls for more support.
Big hugs, Paula.
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good morning Paula!
Thinking of you.
Z
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Paula, I am sorry there isn't anyone nearby. Hugs to you. It is hard for me to say specifically why you are dizzy. I am not surprised though since you are dealing with mets that have not yet been treated. If you are to the point of not being able to move, please contact your onc. The steroids are supposed to relieve symptoms of mets until we can be treated. Hopefully when DD gets there, it will help to have someone with you too.
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Paula, Being alone provides a lot of opportunity for internal "chatter" to magnify fears. Addressing them by moving ahead with treatment takes strength that you obviously have!!
Som of the dizziness comes from the drugs we take...it's not all from the disease. To second what others have said, anti anxiety meds help quite a bit. I also read fiction to give my brain a vacation from reality for a while. Focusing on a project or job or exercise are all good coping mechanisms!
Plus, treatments buy time and quality of life. You are alive and have a plan! As one of our Mets sisters said, " Not today cancer...not today!"
It will be good to have your DD there! You can do this!
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I got major stair steps and miles going to the Sacré-Coeur Basilica in Montmartre today. It is quite a climb up to get there. The Parisians who take the subway are getting a major workout with the stairs. Below is the mosaic above the alter- of Christ exposing his sacred heart burning with love and compassion for humanity. It is an emotionally extreme feeling to see regardless of your faith.
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llmae- I have started pulling the sequence together and a going to try to have to it finished tomorrow. Just been busy with life and I haven't had the opportunity to record yet.
Paula - I agree that anti-anxiety meds may get be helpful. Also,meditation is a huge component of my life now. There are so many great guided meditations on YouTube. Look up healing meditations and you'll find a lot. There is a great free phone app "Insight Timer"for meditation that gives hundreds and hundreds of guided mediatations or music meditations. Solfeggio frequencies are also great for listening to. It can really help.
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I am seconding the anti-anxiety meds and mediation suggestion strongly. If there was a ever a situation where a little help was needed ... this is it. Oddly there are anti-anxiety meds with anti cancer and other benefits. Not an expert. I go with the old stand bys when having a melt down ... scratching scabs, biting my nails and screaming at my kids. My daughter is so used to it she just rolls her eyes and gives me a hug. But anti-anxiety meds are something that a sensible person like yourself would likely do ... worth some research.
I woke up 2 hours outside of Tokyo with a class 4 hurricane bearing down on southern Japan. It arrives in Tokyo bay at 6am on Monday. My appointment is at noon. They tell me that everything will be running as normal but it will certainly be an exciting commute to the clinic Monday for me. Raining cats and dogs here in Mitake, a small village in the mountains, but no wind yet. Getting a ride to the funicular from the ryokan owner in 30 minutes.
Z
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Take care in all that weather Z. May it be a gentle journey to your appointment.
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Z- good luck with the weather. Sounds like it will be very crowded underground!
When will the cells be re-infused
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almost warrior poses from Degas.
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LOL on the warrior poses, Nkb.
Z, good luck tomorrow on the commute and the appointment.
Hope everyone else is moving. I got caught in the rain today on my bike to get to a mountain on the other side of town. The hiking trail I chose was not marked and had a lot of fallen trees, broken bridges and narrow paths. At some point I heard other people and walked in their direction as opposed to heading for the peak. Sure enough they were on a proper trail and I just followed them down the mountain as it looked like it was going to rain again. It did and I was soaked by the time I got home.
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Glad you made it home safely Heidi!
Hoping you could get to your treatment Z. It had to be a typhoon...of course, because cancer and treatment overseas isn't enough stress.
Take care!
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Thanks lwrite. Windy in the aftermath as I walked to my appointment but not a big deal. The typhoon came through quickly in the night. I was bummed to find that we missed it entirely. 15K steps today, about half looking for an ancient Japanese probiotic to cure my amazing constipation/diarrhea combo ... a magic elixir handed down from ninja doctors.
There is a body of ninja literature on the treatment of stomach ailments because ... you can't be sneaking around stealing stuff if you don't have control of your bowels.
This is a bag of natural killer cells with some gamma delta T cells thrown in ... the T cells are not the main show of this part of the treatment ... they are a freebie that you get when you expand NKC cells. Also killers but not quite as strong. 4th infusion of 6 NKC/T Cell infusions was today. I get dendritic cell vaccine at the same time as a shot into the lymph nodes in my arm. The vaccine triggers the cytotoxic T-cells (alpha beta T Cells) and drives the T-Cell side of the treatment. The alpha beta T-cells are the real killers. They are not infused but rather activated by the dendritic cells.
They heated my liver up to 110 degrees prior to treatment with hyperthermia. The intent is to improve circulation in the tumors and get these bad boys into the tumors. The hyperthermia is really hard and makes me feeling like I am fighting cancer. Otherwise, I might feel I was getting a spa treatment which doesn't address my deeply held believe that I must suffer in order to succeed.
Z
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You are brave, Z! What a treatment combo. Sounds like no stone has been left unturned.
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Z- sounds amazing. Do you feel anything after the infusions? How do they monitor your response?
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I went to exercise class and yoga this morning. It feels good to be more active!
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Paula you are on my mind as I believe WBR starts today. Will light a candle just for you at the temple I visit today.
Nice job snowfall!
Nkb - It's tricky to monitor the response as it can take up to 6 months. Since I need to be on a standard of care treatment during that time, if I do see a response over the next 6 months, there are many scenarios where I won't know if it was the immunotherapy or the standard of care. The response can be partial, the treatment may need to be repeated. Not a magic bullet, but it should improve the odds without toxicity. Not many treatments in that category.
>Z<
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Thanks Z ,
Yes soon to go for my 1st treatment
Paula.
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so scared for today
Paula.
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Wishing you were to give me a hug to
Paul
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