Uplifting and Lively Messages. No holds barred..
Comments
-
Day #1, first 24 hours of 50,000 units of vitamin D, yeah me. It makes me tired for about 1 full day. I wonder how many women are tired, like sleeping through the day tired, like me? I wonder why I can't draw more women to talk about uplifting and positive messages during hormonal treatment? Is it an oxymoron? I don't think so. I read so many threads of complaint, after complaint, after complaint. There are good things to say and share about being in the treatment phase of bc.
0 -
Hi Michelle! My days are starting to get better. I'm enjoying most days and planning for travel and summer events, even with my Lymphedema and Tamoxifin. They are part of me....but becoming a.smaller part of my daily worries. Does that make sense?
I am taking 800 units of magnesium each day and I think it's what happens helped with the.hit flashes. My joint pain is tolerable at this point and stretching seems to help. I have to stretch a lot with the Lymphedema anyway.
Movement is.key for me. When I choose to.sit too long on the couch, my body gets pissed!
I'm still on my.mission to see all 50 states! I think the gulf coast might be next? Or Northeast? We haven't decided yet. 🌸🌻🌼
Here comes Monday!
0 -
Hi Michelle!!
I've been reading and keeping up on you and Claire and your busy lives!
You've also inspired me to get up and moving! I have a very sedentary job with long hours - I'm impressed you got up to 10,000 steps daily so quickly.
I take Vit D - 50,000 units 2 / week. I'm just over 4 years out from chemo and when they drew my Vit D level - it was 7. Big ole number 7. I've been on Vit D for a couple of years now and it finally bumped just over the bottom of normal! Yeah for normal! I never felt any different-
I did start taking magnesium (a few times a week) & the odd thing is - after about 3 months I realized I felt different, better. Can't really describe how I feel different but I do & it was about the time I started taking that vitamin.
Love your jewelry, quite pretty. It makes me want to stop working earlier in the day and start the process of creating something. Even if it's not a thing, just the process of stopping my brain & working the other side of it!
Patty
0 -
TS and Sunny Girl, thank you for chiming in! I want to hear about your busy lives too! I love to write about my experience and hear about other's experiences as well. Being like Claire is what I aspire to, being Michelle is where I start. For the first 36 years of my life, I was very athletic and weighed around 120 pounds. After the birth of my youngest, I suffered with post partum depression and was diagnosed with post menopausal progestin levels. I was prescribed an antidepressant and prometrium, which I took for many years. With that came weight gain and an unhealthy eating habit. That all changed last April, when I took myself off of dairy and wheat, because I could tell that the two foods were bothering my digestion. In August of 2016, I was diagnosed with breast cancer. That diagnosis changed my life forever, and not in a bad way. But, in a wake the hell up way..... I began my rise to where I am today. I was doing some form of exercise for a while, but not to any great degree. Then, along came Claire, and pushed me to get up and start walking. My athletic former self kicked in, my ocd for logging goals kicked in, and I was on my way with walking. I walk for at least 50 minutes when I first get up in the day, then add on 20 minutes here, 20 there to reach my goal of 10,000 steps. You could even catch me walking at 11 at night, at home, to get those last 1,000 steps in for the day. Breast cancer is a journey that no one else can walk for you. It is you, only you, taking each step toward better health. Breastcancer.org boards, such as this one, can be here to lift you up and motivate you to do everything possible, to fight back against breast cancer. I hope that you will contribute to this thread.
0 -
Oh my. This really spoke to me today. I need to take complete ownership of my health.
Breast cancer is a journey that no one else can walk for you. It is you, only you, taking each step toward better health.
I will contribute more often, and appreciate the invite to do so!
I have a Fitbit and welcome you as a friend Michelle.
0 -
I love this time of year! Growing up in an Irish household, St. Patrick's Day was equal to celebrating Christmas. My father, first generation from Ireland, in the US, was very proud of the traditions surrounding this day. So much so, that he sent us to St. Patrick's Catholic School, where we had mostly Irish priests who spoke brogue. My family was a non-drinking family, so the day was more about tradition and heritage. I think the Irish have the only Saint's day that has parades and huge celebrations. I absolutely loved living in Chicago where the river was dyed kelly green each year. The Irish are generally very proud of their heritage and love to display their pride on St. Patrick's Day. Immigrants from Ireland had a tough road to walk when coming to America. I can remember my dad showing me pictures of employment signs saying, "no Irish wanted." Saint Patrick's Day, is a day of being able to show pride in heritage, that was denied many years ago.
I think being a hard headed, stubborn, Irish girl, has helped me tackle the breast cancer diagnosis. Never one to give up, I push forward hard every single day, to make a difference in my life and the lives of others. Now that you know about my "roots," so tell me about yours!!
0 -
michelle - I have been following this thread, and saw your post about traveling light and asking for ideas. I wanted to give you my strategy - because my husband was stationed at the Pentagon and we lived in northern Virginia and my ailing parents lived in California, I traveled extensively back and forth and developed a way to pack light. I took black, white and khaki basic pieces - like a white blouse, white t-shirt, black long sleeved shirt, khaki capris, black slim pants, and one pair of nice jeans. I took one casual pair of black shoes or sandals, and one dressier pair or high heeled boots if it was winter- they went with all pieces I brought to wear. If I needed a jacket or sweater I wore it on the plane with the jeans and boots. I accessorized with colorful scarves and jewelry (you already have that nailed with the beautiful necklace above!) and they don't take up much space.
On the hormonal therapy front, I am in year 6 of aromatase inhibitors. I have learned what to eat to control my weight and reduce joint pain, it is restrictive but I have learned that I am not someone who can eat everything in moderation - it does not work for me, even with pretty strenuous exercise. I am happy with my choices though because they have allowed me to continue taking medicines that have kept me recurrence free, so far, which is the goal. I am considered high risk for recurrence so my oncologist has asked me to continue taking Femara as long as I can tolerate it, so doing what I can to facilitate that makes me feel good.
0 -
SpecialK, thanks for weighing in on the suitcase issue. I am going to stick with black and white for the trip and carry a Rebecca Minkoff backpack and use a black suitcase for carry on. I decided it would be too hard to get everything in a backpack, and could be heavy to lug around the Denver airport on the way back. My backpack is pictured below. I think I am going to carry that everywhere, even dinner. It is lightweight enough and dressy enough to pull it off.
My sister is also a SpecialK, a nickname she was designated by the family as she is a special needs teacher and her name is Karen. I agree with you that I also cannot eat everything that I want in moderation, because I would not be able to control myself. It is certain things, moderation, and of the others.....nothing. I like cashew chocolate milk which is thick and creamy and satisfies my sweet tooth. I also like cashew ice cream, but once I get started it is hard to stop.
I am currently debating (in my head) whether or not a bmx would be beneficial. My insurance would pay the entire bill this year, not sure about from next year onward. I have dense breasts and have scar tissue lumps from my radiation. I feel the pressure to stay ahead of the curve and ahead of congress. No matter how expensive the insurance policy from here on out, does not mean it will be feature rich and allow me to take care of both my physical/psychological needs when it comes to dealing with breast cancer. I would like to know, from everyone, if you had a do-over, would you have the lumpectomy or mastectomy?
0 -
michelle - I usually take a black 22" carry-on bag and a fabric Vera Bradley tote (fits under the seat in front of me) with a strap that fits over the extended carry-on handle so I can roll the whole thing through the airport. I don't carry a purse when I travel, instead I pack a Maruca bag (fabric foldable purse - I have several in different colors, love them) that is neutral and matches all of the basic clothing I take with me and I take it out and fill it with wallet, phone, lipstick, etc. when I reach my destination. Rolling instead of carrying is also better for lymphedema prevention. On the matter of mastectomy versus lumpectomy, I have no regrets at all about choosing bi-lateral mastectomy. I had aggressive, node positive, Her2+, strongly ER+ cancer, with DCIS that had invaded both ducts and lobules and IDC in the right breast, and it turned out that I had undetected ADH and ALH in the supposedly prophylactic breast, discovered on post-op pathology. I had dense tissue that hid my palpable 2.6cm mass from mammography, and I had multiple simple and complex cysts in both breasts at the time of mastectomy. After many years of cyst aspiration, bi-annual imaging, and close surveillance by a breast surgeon I knew it was time for both breasts to go even though I was initially considered a lumpectomy candidate. Despite many reconstructive challenges and a boatload of additional surgery, I would make the same choice again.
0 -
Iron infusion #3, day 1. Went to my MO's office for my third of four iron infusions today and as I sat in my comfy chair, I noticed a familiar face. I knew the face, but not the hair. I was sitting about 20 feet away, so the person's features were not completely clear. It was a former neighbor of mine, that had moved out of state. She was getting chemo. Diagnosed in November, lumpectomy in November, one node positive, and now on Taxotere with five treatments to go. She has moved back to the area, because this is her home base and she has many friends. Do you know what one of her biggest concerns are? Getting radiation treatments. As we endure the segments of treatment, we can build up a negative opinion in our mind of how we will respond to the next treatment. Here she was, enduring chemo and worried about radiation. I told her not to worry, who was the best RX person in town and what I did to prepare and followup after treatment. I think that eased her mind, somewhat. Why is it that we can be in the midst of doing active treatment, but yet lose our confidence about upcoming treatments and tests? I know what my answer is, because I had to deal with it from day one of diagnosis and work with a counselor to have perspective. Has this ever happened to you and how did you get your "groove" back? I will tell you the story of how I regained my confidence and faced a breast cancer diagnosis in my next post.
0 -
If I had to do it all over again? Well, if I hadn't had that once-in-a-lifetime Mediterranean cruise coming up (so important to both of us because Bob nearly died from a botched procedure and mismanaged hospitalization in the months before our diagnosis), I might have opted for a bilateral breast reduction along with the lumpectomy. But I still wouldn't have had a mastectomy—just the lumpectomy and radiation. I have large but not dense breasts, so mammograms are reliable for me. I would have insisted my SNB incision be sutured from the get-go (because the weight of my breast pulled the surgical adhesive open and the seroma leaked all over). I would still have chosen the short targeted external partial breast radiation protocol, and I would still have declined chemo. (My Oncotype score was 16 and my MO agreed chemo was not advisable for me). I would have pushed harder for Prolia rather than Zometa as my first osteopenia treatment (I was finally able to switch to Prolia, as I had argued all along that I met all the criteria for it). And I would have exercised greater dietary discipline—my weight gain from letrozole has taken hold and I am fighting a difficult battle to avoid getting fatter, much less losing any weight. I also would still have opted for letrozole, though—it is the most effective of the AIs. And had I known my treatments would have been this, um, non-onerous, I might not have curtailed my performance activities to the extent I did—I certainly would have remained in the 2015 CBA Show, only perhaps in a less physically-strenuous role.
As for traveling, I too try to go monochromatic for short 2-3 day trips and maybe only a couple of color schemes for longer ones. I generally check one large 29" or 30" suitcase (if gone for more than a week, and on an airline or fare that allows it, a second smaller one, 25", for shoes and other bulky items plus souvenirs). My checked suitcases are Rimowa Salsa Air 4-wheel spinners—ultralight and roll easily while upright without much effort. No fancy compartments or garment carriers; instead they open flat like a clamshell and each half has a full mesh zippered cover. Therefore, if there isn’t room on the hotel room luggage rack to open the case flat, I can store it in an L-shaped configuration without stuff falling out. I never fold my clothes, I roll them. I won’t travel with any clothes I can’t roll without wrinkling. It’s amazing how much you can fit in one suitcase that way.
For carry-on, I used to wear a microfiber theft-proof shoulder-bag purse and stuff it into a large tote when about to board—the combination is my “personal item." Into the overhead goes a 22" Rimowa Salsa Air spinning rollaboard, which doubles as sort of a rolling cane when making my way through long airport corridors. I keep emergency change of underwear, meds, Netbook (MB Air) and jewelry in there as well as things I may need en route. The tote fits on top. Lately, though, I've been using a small leather Coach crossbody dual-zipper purse, which not only takes up less room in my tote but is much more presentable for both business wear and nights on the town. (Also makes it unnecessary to pack a dresswear purse). If traveling for business, I use a leather brief-tote; if on vacation, a padded canvas one I got as a Sierra Club premium.
If I am flying to a performance—and in that case I will fly ONLY on Southwest because of their free baggage policy—it's a little different. One checked bag will be that large Salsa Air. The other will be a padded double dulcimer bag that looks like a golf bag (which baggage handlers respect more than they do musical instruments). I put my regular and baritone dulcimers into their respective form-fitting cases and slip those into the double bag. If taking only one dulcimer, I fill the other compartment with soft stuff like socks & underwear to pad it. It's surprisingly firm and well-padded and easily survives being checked. For my carry-ons, one will be a large shoulder bag purse with my meds and other essentials I don't dare put in my checked bags; the other is my folding Voyage-Air guitar. (www.voyageairguitar.com) Its case is a rigid shell with foam padding. One compartment accommodates the guitar with a small zippered slot for small accessories like picks, capos & tuners. The other, which zips off (or can open the case flat like a clamshell for easier fitting into the overhead), is a padded laptop sleeve that also accommodates adapters, a strap and an instrument cable. Both parts of the case have backpack straps. When I get to my room, I zip off the computer compartment and carry around just the guitar compartment. The neck folds for transit; when it comes time to play, I unfold it and tighten the bolt that doubles as a strap button—and nobody can tell it’s not a normal full-size acoustic guitar. (I do occasionally like to freak people out and make them think the airline broke my guitar’s neck).
I used to check a full-size guitar in a heavy fiberglass flight case and bring my dulcimer onboard, but those flight cases weigh a ton and I’ve heard too many horror stories of either thefts from the tarmac or baggage claim area or forklifts piercing or running over & crushing even the sturdiest cases. It’s easier & cheaper to repair or replace a damaged or lost dulcimer than it is a more expensive guitar (in a case that costs nearly as much as the guitar).
0 -
ChiSandy, "girl, you had me at spinner wheels..." in Tom Cruise's voice, of course!!
0 -
So sorry I have been MIA. Just endless work with onboarding a new person. It's before 6:45a and I have already knocked two items off my list if that gives you any idea. I do plan to go into Seattle later today for a bit of shopping as running out of items like hose and I need to use my birthday gift certificate at L'Occitane. I also need a couple of make up items.
The terrific news is that our new person at the nonprofit is exactly the person we need and major fun to work with. But tons going on. The weather was so foul this weekend (not to mention the road being closed much of the time) that I bagged skiing and worked, both for the nonprofit and also taxes.
As for your question, Michelle. I would think twice about "cutting it all off" unless medically necessary or very strong genetic evidence that this would be a good idea. There is such a thing as overtreatment. I wanted a lumpectomy if possible, but because I once repaired high volume reprographic equipment for a living and know all too well how easy it is for something not to turn out as planned. I also wanted to be as done as possible with treatment as soon as possible so I could get on with my life.
There is no survival benefit of mastectomy vs lumpectomy. The big payback one is what you are already doing. EXERCISE!!! The latest meta analysis out of Canada confirms this. (See the BCO recent article on this on the home page.)
The other benefit of exercise can be explained this way. Last night, I ran into my neighbor Nancy as I was returning from my walk. I was still in my work outfit (a lovely vintage Donna Karan 2-piece black knit) but had my reflective yellow parka over. So I opened it to show the knit outfit to Nancy which also showed off my toned profile. Let's just say I made the day (and possibly the FB profile) of another neighbor who appeared about then. In fact, I had to drive him off!!!
My other news is that spring is arriving. The frogs are singing and I have been waking up to bird song. One or two more days of skiing, and then cycling season begins. I will need to train up for the Tulip Pedal next month.
That's my story, and I'm sticking to it. Wondering if the guy got any sleep last night. Yep, my last guy was right: I can be wicked
Happy nearly spring!!!! - Claire
0 -
"Fear: the final frontier. These are the voyages of the breast cancer survivors. Its five-year mission: to explore strange new worlds, to seek out new life and new civilizations, to boldly go where no one has gone before." I do believe that as a breast cancer survivor, fear opens pandora's box. Inside that box rests pretty things, like skis for Claire, a one of a kind guitar strap for Sandy, jewels for me, and also a "hell of a lot of unanswered questions."
Getting IV iron infusions weekly, for the last three weeks, in my MO's treatment center, has my eyes WIDE open. I take in bits of information here, bits there, bits on the radio to and from appointments. I see the others enduring chemo, pondering the what if. With all of this information comes questions: did I do the right thing in having a lumpectomy? should I have done more? how much more will my radiated breast shrink and harden? why did I take mastectomy off of the table?
I am the Socrates of breast cancer. There it is.
- Did I make the right choice of having a lumpectomy? Yes, I did and had an amazing surgeon.
- Should I have done more? I have done everything possible at this time and do not want overtreatment (as Claire reminds me).
- How much will my breast harden or shrink? Not sure, and will deal with that issue as it arises or collapses, as in the shape of my breast.
I think we have questioned ourselves about what could have and should have been in decision making. And, hopefully, in the future, other women will read this thread and use it to ask themselves questions and to comfort them that they are not alone with their questions. Everyone has questions and it is okay to ask them out loud or on a thread. Everyone has fear and has to learn coping mechanisms so that they can get the most out of life, explore strange new worlds including new ski slopes, new music venues, or new ways to create a bezel for a stone. Fear helps us tear down and rebuild both mentally and physically. Fear helps us get to those new areas of our life where no one (we) have not gone before.
We are lucky to have such smart, educated and witty women contribute to this online community. Having reached out to others, has made me introspective. I really appreciate everyone's contributions and know that you have been a balance to my checks (questions) ..............."Okay, Pandora, I am ready now. Go ahead and bring your box!"
0 -
Day #3, after Iron infusion. There is no rest for the wicked, as the saying goes. I have insomnia and it is made worse by the iron infusions. No sleep on day #2. I listened to ocean waves hitting the shore, something random on television, old mystery radio shows on my phone, laid in silence, and nothing worked.
I went out of town yesterday just for a little while. My friend drove as I slept in the backseat of my car. I guess that is the trick. Just like a baby, I fell asleep on a car ride. Did anyone else have insomnia after radiation? I have had sleep problems since October 25th, and I finished treatments on November 2nd. I have spoken with my doctor, and she gave me paperwork and studies on insomnia. I slept fine after the lumpectomy, so I hypothesize that this insomnia is related to radiation. What do other women use for a sleep aid?
0 -
So, what did everyone do this weekend? I have been working around the house, grocery shopping and walking. Took my mega vitamin D today which makes me a little tired. No iron this week or the following week, until I come back from Vegas. Looking forward to getting my life back on track.
0 -
My husband and I spent the weekend in Astoria, WA. It was sunny beautiful all weekend and a whopping 54 degrees. Pretty drive, good food, time alone with the husband and the hotel is on the water so we listened to a whole group of sea lions - day & night. Funny, it's so quiet at my house - I miss those noisy boys!!!
0 -
Plus, after taking Vit D - 50,000 units twice a week for 2+ years - I just had my level checked and it was 43!!! WIN!!!! I'm not sure when I'll stop taking it - but I bet when it gets up to 50-60 range we will have that conversation. Had to share with people that understand!
Patt
0 -
Sunny_Girl, definitely understand. What most people don't know that is a lack of vitamin d has been speculated to attribute to breast cancer and other cancers. It is very important to have a stable dose of vitamin d. I don't lay in the sun or eat many foods that are fortified, as I am a whole foods and raw foods person. I am trying to get used to insomnia the day that I take the weekly dose. Hoping that side effect will dissipate with each added dose.
I also understand the quiet at your house. My son moved to a dorm this semester, after having studied in Switzerland in the fall. My 18 year old daughter was house sitting this weekend, so it was really quiet. I see my son more than my daughter, as he says the dorm is boring. He loves staying busy and on top of his grades. He builds with my husband, goes to the university full time, and has become a repo man for a bank. At 20 years old, he is getting quite the education. One year left until cpa exam. My daughter is less than interested in hanging out with me. She makes me laugh and thinks I was born a century ago. At 18, you would think she was a 30 year old attorney or business executive. Both of them make me laugh, because at their age I was much more mischievous.
0 -
Well, my Vegas flight got switched to a red-eye, which is fine by me. It is the return flight, and we were going to have to travel 12 hours for a 3 hour and 9 minute flight, otherwise. Since I have insomnia, I thought this might be a good use of my night time hours. My friend also has insomnia, so we should be fine and might get a couple of minutes of rest on the plane. We also got better seats at no additional cost. Woo-hoo, midnight express here I come!!!
0 -
Next week is the big week....yeah... No iron tomorrow or next week and just one treatment when I return. Did my 4th 50,000 units of Vitamin D on Sunday and am debating whether I will take one this weekend or wait until I return on 4/3. It really knocks me out for at least 24 to 48 hours. I will have to ask my MO what her thoughts are on this topic. Flowers are up in central Illinois and I am shocked. Last year, glads and tulips bloomed more towards the end of April, not in March. I also had pretty flowers for the backgrounds of prom pics. Yesterday, I saw kids on bicycles and I became a little teary eyed. Those days are gone and I think I miss them.
A friend of mine, whom I have not told about the bc, posted a photo showing an MRI with dye on facebook. I wrote her privately and told her what I had been through. She felt bad for me. I don't even feel bad for me. It is still surreal to think that I have bc, had lumpectomy, radiation, hysterectomy/oopherectomy and now am on Tamoxifen. It is a blur. I am just taking each day at a time and making the most of my life. I really appreciate hearing about how others are doing, as it makes me feel more normal.
0 -
I'm returning to work next week, for 3 weeks until I start radiotherapy. I'm choosing not to work through the radio as I average about 48-55 hrs a week, they won't make allowences for me being 'under the weather' so am going to take the time out.
In the meantime, while I'm home, I'm trying to increase my exercise (walking). Am using my fit bit to raise my steps each day, which lifts me emotionally as well as physically. And I do my nails, every day, I've never followed any beauty regimes, not had time for that 😆 However, since I've been home, I've been doing nail stamping and forehand nail art, which is challenging a single I'm not an artistic person 😆😆. BUt it keeps me happy and busy, even if it's just researching my next design 😆😆😆
My tulips all blew over in the horrific weather that we had yesterday, have to try to rescue them today, as I love my tulips and can't wait for them to bloom 😆😆
Thanks for alerting me to this thread Michelle_in_cornland 👍
0 -
Today's mani, I do this to raise my spirits, and make me feel happy 😆0 -
I love your nail art. Keep it up and educate us on what is cool and hip
0 -
and teach us how! Do they apply like jamburry? How do you design?! So very pretty!
Today's a good day. 🌼🌻🌸
0 -
Michelle _in_cornland...I'm not sure that I can be described as cool and hip 😆😆, I just watch you tube videos, and try to replicate what I see, as I've no artistic talent 😆😆
Tsoebbin....I'm very new to doing it myself, so I'm still learning, but can probably offer some hints and tips that I've picked up along the way 😆😆.
Here's today's effort, in honour of us all...
0 -
Shaz, love the nails. Very cute. I think that being creative allows us to find passion for actively doing something. ChiSandy is a musician and plays the guitar. Claire is a chef with a keen eye towards wine selection. I am a designer, both in jewelry and residential construction. Shaz you are a nail artist. Everyone has different skills to drive their passions.
Being actively creative, especially when in bc treatment, is important. It takes the focus off of bc diagnosis and centers our thoughts. Here is a little lighthearted research between being creative and feeling positive.
"Not a singer, writer, or dancer? No problem. Experts say absolutely anyone can be creative, though different people may have different talents. "It really has to do with open-mindedness," says Dr. Carrie Barron, co-author of "The Creativity Cure," who says creativity applies to everything from making a meal to generating a business plan."
''But whether creativity means whipping up a spinach soufflé or tap-dancing for a Broadway audience, experts say there's a strong connection between creative expression and overall wellbeing. Key components of the creative personality, like novelty-seeking and perseverance, are also good predictors of life satisfaction. And it works both ways: People also tend to be most creative when they're in a good mood, possibly because they don't fixate on individual pieces of information and are able to think more broadly . And according to creativity researcher Dr. Shelley Carson, "Increases in positive mood broaden attention and allow us to see more possible solutions to creative problems."
0 -
I'm going to be a grandma in June.💙💜💚💛! I designed the baby shower invites. Feels great to be creative. We're having a tailgate shower for my son and two of his friends who will also be new Dad's around the same time.
I'll try to post a picture of the invitations... I made them resemble tickets to the game.
0 -
Here are the tailgate shower invites. Felt good to be creative!
0 -
Hey, that's really good 👍
0
