Stage IV MBC Fitness
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What a birthday week ... chemo IV, fasting and, wait for it, surprise cyberknife surgery. I have a 2cm dural lesion deep in the underside of my brain. It is not actually in the brain, it is a lesion that developed in the dura or membrane around the brain. It is pushing up on the underside of the brain. The malignancy is unknown but the pressure on the brain is causing edema (excess fluid/inflammation) in the brain. Malignant or not it was clearly effecting the brain.
I met with the neurosurgeon at Mayo on Monday (yesterday) expecting to evaluate the most recent MRI and do treatment planning in preparation for a treatment in July. Well, the neurosurgeon signed me up for gamma knife surgery today (tuesday). At Mayo it is a one day out patient procedure (not what Dr. Google says, btw).
I can't tell you how many times the nurses looked at my wristband and said Happy Birthday! I am thinking can we just get on with this .... really?
This thing is screwed to my head with actual screws. They use novocain and friends before they screw it in. The only part that hurts is the shot of novocain ... but the pressure when they screw it in is quite something ... for two minutes. After that it is just weird, not painful. They give you a healthy dose of Ativan so you don't feel like doing much and the fact that there is a metal frame on your head is kinda ... sure, that's fine.
Okay, now you can wish me a Happy Birthday ....
I got in about 8K steps today walking to and from the hospital from my airbnb. I've got a whole house to myself with a great tub where I can soak my head wounds where they screwed the frame to my head in epsom salt ... not what they say to do but I am totally tired of taking direction.
Off to Denver and Winter Park tomorrow for 5 days with family in Colorado. My husband and daughter will meet me in Denver. My husband brought my mountain bike under protest. What do you think ladies ... should I mountain bike? ... or not mountain bike???
Not tonight anyway ...
>Z<
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Wow! What a whirlwind experience! So glad the lesion was taken care so quickly and that you have family time planned. As a nurse, and, although I hate to discourage physical activity, I think mountain biking might be pushing it...if you took a tumble and hit your head, it would not be good. It may depend on the terrain?
You look great and I hope you enjoyed your bath.
Happy Birthday!
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KPW3 - I can't see mountain biking at the moment but I've certainly done dumber things in the past. Stay posted for the crazy adventure following my next bad vacationing decision ...
>Z<
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Happy Birthday Z and many returns on this day! Please don't bike....enjoy your family and take it easy for a change...you will have plenty of opportunities to bike when you're stronger...
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Jeez, Z, the hits just keep on coming. Go easy for another two days, things need to settle back into place inside. Thanks for the photos and such, its just so important to get these procedures seen and decribed and talked about. Brain stuff treatment is one of the bigger scary things in MBC, for me, anyway. From what I have read and heard from the forums here, though, its somewhat like other treatments, one step at a time. I am sorry you had to do this, but glad it is over and am eager to hear how things go on your vacation. That is, if you even want to look at bc.org! Hugs.0
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Whoa! Lots happening since I’ve been away! Love the picture of you and lwrite, Zarovka, but not liking the brain mets! I’m so sorry that has happened but you continue to amaze me with your resilience and attitude. Much love to you as you deal with this new situation.
Actually, that is one reason I popped on today. One of my friends that I met on this site back in 2007 when I first went through treatment just learned she has brain mets and is scheduled for cyberknife. Would any of you who have had brain radiation be willing to chat with her about your experience? If so, maybe you can private message me and I can connect you. Thanks, everyone.
Oh, and I should report that I was a lump Monday but since I did 90,000 steps last week, I’m not going to beat myself up about missing a day. Did get a walk in Tuesday, some mild yoga yesterday and today, and a bike ride tonight.
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Z, I hope the head wounds are healing well and keeping fingers crossed in July. Gentle hugs. Sorry to hear about your friend, DGHoff.
Going out for a bike ride/ errand and will do some yoga after.
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DGHoff, I had Gamma knife, not cyber but I wouldn’t mind helping your friend out. Also, there’s a video on page 205 of the brain Mets sisters thread that explains the Mets and different treatments, it’s pretty good 🙂
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Two hikes this morning (2.6 miles) with an opportunity to once again smell the ponderosa pine trees...ahhh. Yesterday I planted a garden at my daughters house. Loving Colorado and my little apt here! I can see Pikes Peak from the kitchen window. Life isn’t like what I planned, but it is amazing :
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DGHoff - I had gamma knife on Tuesday at Mayo. Arrived at Mayo on Monday thinking Cyberknife was the better, easier treatment, left yesterday for Winter Park Colorado praising Mayo and the heavens above for giving me Gamma Knife. Anyone can PM me about my experience. But basically if you have limited lesions under 3cm, go to a facility that has Gamma Knife if you can. You at least want the option ...and if they don't have gamma knife, they won't discuss it. The metal frame looks scary but IMO GK was easier and better, IMO. Mayo has made an institutional decision to offer only GK for brain lesions after a lot of consideration.
Today is two days after Gamma Knife treatment. I had a shaky, nausea moment this morning but since then I feel really good. I can feel pressure on my skull ... an inflamed brain? I declined dexamethadeath. Probably exacerbating/causing the pressure. The pressure is not painful but definitely there. It is keeping me off my bike even for a flat ride or from doing anything mildly strenuous. Sticking to a very very strict anti-inflammatory diet and easy walks.
I also have some inflammation around the eyes. I haven't been lying around with ice on the screw locations on my forehead as much as advised. But I am sitting around the condo while everyone else bikes. Gentle walk planned for later.
Thanks for your support everyone. Keep moving.
>Z<
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Have just returned from 10 glorious days in Montana and Wyoming visiting Glacier National, Yellowstone, and Grand Teton parks as well as Bozeman, Big Sky, and Jackson Hole.
Hikes, walks and white water rafting around stunning beauty was good for the soul and the body. I overdid something though between trying to squeeze into a wet suit and the lift of our heavy bags in and out of cars and cabins. Have had searing head pains for four days that if they happened at home I would have gone to the ER but being in remote Montana was a predicament. There were Tribal Doctors available to me but ibuprofen (a big no no while on blood thinners) took the edge off. MO has ordered an urgent Brain mRI. I wish I could get massage but have been told not to with bone met in spine and MX.
THere was a point during the whitewater rafting and maybe 20 to 30 miles of hiking that I teared up thinking that I was doing this with MBC. I’m stronger than I realized. Brought back to reality a bit with the pain but hope it ends up being muscular skeletal in the end. I need a good stretching routine and need to move like I did while on vacation.
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Cool Jen, how was the rafting? I wanna do that sometime. Hoping for a boring MRI 🙂
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The rafting was so fun! It’s thrilling to go through the rapids. This was only class 2 and 3, and even then the river level was very high so it made them more on the easier side. Not sure with the MX on one side that I’d want to do class 4 or 5 in a kayak anymore0
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Z- Glad you are enjoying a Colorado vacation and relaxing! Hope GK is wildly successful for you
Jen- Your vacation sounds perfect! Being out in nature is good medicine. Hope the MRI shows a Dx of too much fun and a treatment plan of more fun!
Illimae- come to CO- I found an all day raft trip for about $150.
Got in a 2.5 mile hike yesterday, but sat around today...too easy to be lazy ...
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Jen, sounds like an AWESOME outdoors itinerary. I really hope the diagnosis and treatment will be as Iwrite wrote.
Recovering from a bug but today I have no excuse except I need to send my DD off for a school trip to Greece.
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Iwrite, I love your dx hopes. I’m rooting for too much strenuous activity as well. Had the brain MRI this afternoon so I’ll know more on friday.
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I think I only shared about the brain MRI here....initial read looks clear for bleeds and clots. MO was looking at the images reluctantly while on the phone with me and said it looks clear to him overall but we need to review the final report when it comes in. I was most worried about being a ticking time bomb over the holiday week. I'll relax about it and enjoy the all day chess tournament tomorrow that my son is in and his bday party on Sunday.
The best part of this is that I can ride that wave of remembering how strong and capable I am. I had forgottenthat as I babied my left side since mastectomy. I will have to rethink the lifting of 40+ pound stuff as well as cramming myself into a wetsuit, as I believe these to be the culprits!
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Went to an awesome double headliner concert tonight (Weezer/Pixies), 14,747 steps but the stairs to the lawn seating kicked my butt! Whew, goodnight all 🙂
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Jens, hoping the final report shows everything is ok and you just overdid it a bit! Sounds like a beautiful trip! I’ve nevertheless done anything like that!
Mae, lots of steps but sounds like it was worth it!!!
I write...I’m going to have up get back to walking after this radiation. I think I would feel brtter
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Four mile hike near Vernal, Utah this morning with my Airbnb hostess and her friend who works for the bureau of land management. I've met the nicest people on my adventures! Hardly have time to remember to take all my drugs and vitamins
. Going back to the Ute Pow wow this afternoon. Like stepping back in time to hear the drums and see the Native American dancers from tribes all over the continent. Have a good weekend everyone!! 0 -
Has anyone been in contact with Zarovka? Hopefully, she is just living her life and having some normality. Still worried a little bit.
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I see she has at least logged in. Hoping she is just relaxing this week for your July 4th.
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Chores are my exercise today.
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Wow, illimae! Great way to get exercise and so much to show for it!
Better than my walking in circles here in the house, lol. It's too hot to go outside though.
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Go Jen!!! I relate. Recently I was hiking up a 12K peak 6 days after Gamma Knife half impressed with myself, half wondering WTF I was doing. We made it. Really glad you got a brain MRI. I don't feel the brain is being monitored well in Stage IV breast cancer. Metastasis of MBC to brain is common but also treatable.
lwrite - I love your life. Can I have your life?
Illimae - Nice mowing job. Go Girl.
Mara - Hi. Thanks for thinking of me. You are always in my thoughts.
Dealing with GK and chemo, I have ups and downs which restrict my BCO time. With the energy I have I have to prioritize moving and self care.. I have been moving. I wore right through the heals of my hiking boots without realizing it.
I've been soaking in a magnesium bath every day for at least an hour for the last month. I started because I needed to get lesions and cuts on my skin to heal. Abraxane is interfering with the would healing process. Bathing in a magnesium bath tips the balance in favor of healing so I don't turn into a leper.
As an added bonus, leg cramping stopped almost entirely. Not sure it was the magnesium. I restarted high doses of Alpha Lipoic Acid at the same time. ALA is an approved treatment in Europe for leg cramping related to chemo.
Epsom salts were effective, but when I switched to Magnesium Chloride there was a noticeable difference in the wound healing. Cramps went from infrequent to none. Magnesium Chloride is known to be better absorbed. Winning the battle rather than just holding things in check now.
At first bathing an hour a day seemed unsustainable, but I've organized things to use that time to read things I need to read. It's been pretty efficient. Need rest these days anyway.
But this forum is not about soaking a tub. Keep moving ladies!!! And tell us about it.
>Z<
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Hi fitness friends!
First and foremost, thank you Z for all your encouragement and wise posts. I follow a lot and don’t post too often. I am sending lots of gentle healing thoughts to you and everyone
Curious to know if people are experiencing any difficulties after a workout? I did a cardio kickboxing class on Thursday and on Friday I felt incredibly sore. By Friday night I had a slight fever, and today I’m just laid out in bed. I’m trying to make sense of a pattern here...also had my Lupron shot yesterday...
I seem to have this happen maybe once every couple months where I end up feeling worse after exercising. But for the most part, exercise makes me feel amazing! And the immediate after-effect of the exercise has me whistling while I am walking down the streets. But the next day and day after I have had this slight fever spike and aches.
I am wondering if I’m losing too many electrolytes or something?
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Illimae, that is a lot of grass mowed! Z, way to wear out your boots. Those daily baths sound amazing!
LovefromPhilly, we have to give ourselves time to recover from exercise or give our bodies an assist to get there faster. I used to take ibuprofen or aspririn either before, after or before and after intense exercise. I often do just half a class of Body Combat when I don't want to be in pain.
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Philly, thus happens to me sometimes when I do a long hard swim. I’ll just be wiped out and get nothing else done the rest of the day. I’ve usually thought that I just over did it.
Those Lupron shots mess me up. I can’t say that I have a fever but extra fatigue and soreness for sure
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Yep...hiked 3.5 miles at 8,500 elevation this morning in Florissant CO. Drove home and took a two hour nap. Exhaustion after a workout “high” feels real. I take B12 to boost energy. Recently met a BC hiking buddy here in CO and am getting out to try new trails more often. Being retired makes this possible.
Hats off to you who are working and raising families while dealing with MBC!!! You are warriors!
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thanks for the responses!
I am investigating more deeply into this and it’s prob about time I keep a little health journal so I can track my patterns better.
I def think the Lupron shots take a toll. That plus perhaps overdoing it. Which is a fine balance because it feels so darn good to punch and kick that punching bag!!
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