Life does not end with a stage IV diagnosis (really!)
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Kikimoon, Great idea, and Raquel really has some pretty ones .
Colored clip in extensions are another option for trying out the pastels or bright colors.
Chicagoan, I’ve always loved the sound of xylophone. Maybe something to add to my musical bucket list.
Well, I just cleaned out my refrigerator- we can add that to the mundane “Life Goes On at Stage IV” list. Glad I’m still able even though it ain’t my idea of fun!
Sunnidays, hope the thumb heals quickly
NYCYogi, best of luck with chemo and happy hair experimentation to all of us!
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My Brother got all the music genes. I'm just one who enjoys. All my friends were in the band. I went to their concerts and hung out. Believe me, I tried. Flirted with the recorder in elementary school, which is when I found out I couldn't cut it. Some people take art lessons, or did before Covid, the new BC. Some found out they were really good. I enjoy hearing about those of you who have found your instruments again or are trying something new. I read and am pretty good at trivia. If it's not important, I probably know it. You'd want me on your team.
We who have large heads have a tough time with wigs. I found a large cap wig that does the job, low density, great color mix of grey. Didn't need a trim. All good, right? Yeah, except a budget buster. Should last awhile because I don't have to wear it every day since I'm mostly home. I'd better play with fun color soon before those cells decide to divide again and Taxol takes the hair since I've been on it since November. Carpe diem! I had my infusion today and am waiting for the Benadryl to wear off and the steroid to take over. Chores tomorrow. So glad to have joined this thread. I'm gonna live while I'm alive. Um, I think that's Bon Jovi.
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Here’s a funny. DD started with flute in 5 th grade. Moved here, started bagpipes in middle school. Played them all through hs, most of college. Still does. Two years ago, she was in the Macy’s thanksgiving parade. With her flute. Which she had never marched and really didn’t know how. Flute was her concert instrument
I can’t carry a tune in a bucket.
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KikoMoon- My sister collects Lori Mitchell Halloween kids (pic below) and was thinking of making a wooden backdrop for all the trick-or-treaters, but perhaps your Halloween Houses would work? Depends on the scale, colors, etc. Do you sell them on etsy?
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Ah I always thought the bassoon was the coolest instrument and such a great sound! I played the cello for almost 8 years, pinch hit has a violist for a year, and then two years of french horn and trumpet in high school (horn for concerts and marching, trumpet for jazz). I still can't listen to a Gloria Estefan song without automatically wanting to march in place!
Today I learned that non-alcoholic near-beer is the nastiest thing ever. I didn't want to risk a margarita with a first day of new Ibrance cycle, so opted for that fine pale beverage. When cold it was ok but afterwards my tongue felt like it had put on a fur coat. So gross!
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Candy, I love your sisters collection, please post a photo of how you arrange them for Halloween.
I played the Oboe for 6 years and was pretty good. I did not want to pursue music in college so hung it up. Fun fact, in high school I had paid gigs to play my oboe with a friend who played the flute at Renaissance Fairs (in our gunne sax dresses and floral/ribbon wreaths on our heads!
SondraF - I, too started my Ibrance cycle today - pretty sure we started around the same time originally. Sorry about the near-beer, yuck!
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SondraF - the only halfway decent NA beer I've had is Clausthaler
Olma - I'm so glad you posted about Duolingo. I had to look up what it was, lol. I used to read Spanish very well, and speak it a little. We lived in Italy for a few years (many years ago), so I learned enough for basic conversation. Now, when I try to think in either language, I just get a jumble of the two. I'll have to check out the app and see if I can straighten myself out.
Teedoff and Kikomoon - I'm right in there with big heads. I wear a 7 3/8 hat, and I guess that translates to 23 3/8". I haven't needed a wig, yet, but I've suspected size will be a problem. What is a cap wig?
I used to play the organ and recorder (alto & bass) - I tried guitar, but was never very good. Now, I just like to sing for my own entertainment. I made sure my kids learned to play something (they chose clarinet) and learned to read music - it's a life long skill. I've always thought the ability to make music was self-satisfying.
I have a sister that is so artistic: plays classical and folk guitar, banjo, dulcimer, recorder, flute, piano, draws and paints wonderfully, great photographer, seamstress, bakes gourmet cakes, etc. I think she got my share of the talent. Lol
We are about to move 900 miles - and downsizing - so all I'm doing these days is purging and packing. Ugg. I plan to start cross-stitching and maybe some other crafts again once we settle in.
Sorry for the long post - I guess I'm chatty today.
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aprilgirl - thanks for the throwback reference to the gunne sax dresses. I loved mine!
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SeeQ,
My first wig was ordered by my hairdresser from a catalogue many years ago. He took measurements and said with an average size wig from Revlon, no longer in the business of wigs, he could make adjustments that would increase the fit and thin and trim to style for me. He did a great job and the wig was comfortable and didn't slide around. I am also cursed with a sensitive scalp and after several hours, I couldn't wait to rip it off my head. After that first chemo, my hair grew back, a tad thinner but okay. Arimidex will do that. I won't drone on. You can tell where I've been on treatments. I've just about run the gamut.
Back to wigs. I researched the internet, read reviews, watched videos. Finally ordered online from Headcovers. They specialize in cancer accessories and are reputable. Great to work with. To finally answer your question, the wig caps come with features intended to make the wig look less wiggy and fit more comfortably. Mine has what they call a lace front and monofilament front that lets me create a natural part. Never done human hair. Too expensive and lots of upkeep. Have fun reading about wigs while you have the luxury of hair. By the way, hats sized as fits most or all just don't. My baseball caps are men's large and so are wide brim men's golf hats.
May it be a very long time before you even need IV chemo. In the meantime, it doesn't hurt to do research. Some wig sites are more reputable than others. Gosh, I've learned so much! Always feel free to ask. I hope other wig wearers weigh in with their experiences but they likely don't share our size issues. I wish my large skull did translate to large intellect. 😂
Kikomoon and Olma, what say you?
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Teedoff- thanks for the info. I hope it's a very long time before I need it, too, but I'm trying to learn a bit beforehand. When you mentioned big head and wig, I knew you were a person to ask.
I pretty much gave up on ladies hats, and finding a motorcycle helmet for my head shape was a trick, so, yeah, I'm a little concerned (but not borrowing trouble).. 0 -
aprilgirl - we did indeed! I always keep an eye out for your posts to see how you are doing
The sad thing about the NA beer is that I am currently in the Milwaukee area and ordering that at the bar specialising in American microbrews was somewhat embarrassing. But Ill take that over a drug interaction any day. I just wish diet soda wasn't so yuck, normal soda didn't have so much sugar, and mocktails didn't all contain a ton of lime or pomegranate! 0 -
Sondra-If you want to give NA beer another shot, try Heineken -0-. It tastes pretty good to me. I don't like most of the other ones that I've tried. I agree with you on mocktails-plus, if I'm going to have all that sugar, I'd rather have a dessert!
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I took piano lessons when I was young and while I was in elementary school, a harpist in the local symphony wanted to go to an elementary school and take kids already playing the piano and teach them how to play the harp. I was selected and I will say that if you can play the piano, you can definitely learn to play the harp. I never took harmonicas lessons but my dad could play it by ear and we would both play together for fun.
Concerning wigs, I purchased two out of the TLC catalogue and it gave good instructions on how to measure and remember that your head size changes from when you have hair to when you don't. The wigs I purchased had some adjustment you could make to tighten or loosen. My hat size is 7 3/8 and the wigs fit me fine. That said, I hated the wigs and only wore them about 4 times. Some people enjoy trying different styles, colors, etc. I hated wearing wigs and pretty much wore various ball caps instead. I did find that some of the head coverings sold for female cancer patients did not work forme because of my big head even without hair.
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SondraF - I felt that way when I was pregnant (oh so many years ago). I would drink cranberry and seltzer, sometimes with a splash of 7up. It's not too sweet or heavy; if needed,, the 7up takes the edge off the tartness. Most bars will have the cranberry juice, but I realize not everyone likes it.
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SeeQ, I've ordered and tried about 10 wigs from various places, some with a restocking fee. I like wigs.com the best. DH and I had a lot of good laughs and most of them were too small or too poofy! I found a Raquel Welch bob that comes just below the ears, ready out of the box. It's adjustable and I think it's got some room in it for expanding. Wear it when I go to the office or out to dinner, which doesn't happen very often now. y only problem is I can't get my widow's peak back. So while it looks natural, it just doesn't look like "me".
Because of my brain radiation, my hair is not growing back on top, so I have a Gargamel (from the Smurfs) look going on. My friends and I had a good hearty laugh about it. I get DH to shave it all and I mostly run around town for errands and evening walks just with a baseball cap. He doesn't mind, reminds him of Ripley in Alien 3 🤣
Cowgal, harp sounds lovely and fun! Such a musical group here, we should start a band.
Cure-ious, I would sell on Etsy if I could get my act together. At this rate I'll have to move on to Christmas. They are probably too small in scale for that cute collection. I'm going to attempt attaching a photo of unpainted prototypes, matchbox car for scale.
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Those of us with large heads have limited wig options. I decided to splurge on Ellen Wille’s Smart Mono Large. If you google the wig on the internet you will find reviews and videos. It is expensive but looks very natural as it is low density and doesn’t have poofy permatease. Ellen Wille is a German wig company. Her collection is gorgeous but way too small for me. She only makes 3 large cap wigs. Drat! I have also heard good things about wigs.com. I have been happy with headcovers.com
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KikoMoon- The houses are probably a bit small but we could put them up on some kind of pedestal, or can they be scaled to be a big larger? or to have a bottom level that is attached separately (so that it could get painted & detailed as well) The figures tend to be about 6-7 inches, some larger and some smaller- BTW, Lori Mitchell also sells a Christmas collection...
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Teedoff - I liked the Ellen Wille wigs too in terms of style but just too dang small!
Cure-ious - will PM you about houses.
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Large Heads. Any help with hats ? Often very hard to find one that fits,is comfortable, and stays on, especially baseball hats. I finally found a swim cap, designed for those with afros/braids etc. I do not have the hair, but the stretchier material and room, makes it more comfortable than the standard cap. Often it is the "depth" of the hat vs circumference.
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BGRS - there are some ball caps that are made in hat sizes now, instead of S,M, L, XL. My husband - who also has a big head- has better luck with those - I don't wear ball caps much. Most hats don't look good on me. When needed, I've always preferred hoods to hats in cold weather.
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I try not to put too much cancer/medical stuff on this thread but I need to get this out. I had a biopsy of my thyroid a week ago. I am usually quite good about not fretting over biopsies because fretting doesn’t change things. I should also add that I have had issues and treatments with thyroid nodules going back many years, including radioactive iodine therapy. The reason I’m even posting about it is because I haven’t heard a thing and this worries me. I belong to Kaiser Permanente, an all inclusive HMO, so there is no issue regarding communication between labs, doctors, etc, and the patient portal is always current . I am not given to health anxiety nor worrying about what I can’t control so I think I will wait for tomorrow to call if nothing appears on my patient portal. This seems reasonable, right
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Somebody forgot to do a procedural sign off. Always a good idea to call and give a nudge. Think horses, not Zebras
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Thanks, teedoff! As I said, I am not anxious or a worrier by nature, and even if it is thyroid cancer, that is usually easily treated but I just want to know!
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Sending good vibes, exbrnxgirl.
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also sending good thoughts for you special lady
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Hi exbrnxgrl, some test results aren't released via the patient portal - most everything is released immediately due to the Cures Act (mandates patient electronic access to health care info), but sometimes things like biopsies are not. I work for Kaiser and we had lots of conversations about this last year when the new changes took effect. Also, my bone biopsy back in January was not automatically released to my kp.org account, yet every one of my CT, MRI, and bone scan results seem to show up the same day/next day! Hopefully it's just a procedural thing and you will hear from your doctor soon. Sending you good thoughts!
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Hi exbrnxgrl, I know it's frustrating not knowing as you say all you can do is wait and get in touch with them.
I am off to a spa hotel for one night my two girls got it for me, spa treatments dont do anything for me but I will use the sauna and jacuzzies, they are having a mud wrap treatment I can't imagine how anyone would think being wrapped in warm mud is fun.
It will be nice to spend time with them, girl power road trip we have a music playlist ready it will be fun.
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sunnidays, I’d love to try a mud wrap treatment just for the experience! I am totally on board with the sauna and jacuzzi part tho, too.
Exbrnxgrl, as good as your medical care group has always been, I think it’s possible a delay in results or notification could be caused by a random issue such as technical problem or short staff. Definitely call if you haven’t heard from them.
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Thank you all for the good wishes and thoughts. I couldn't wait until morning and messaged my doctor last night. Happy to find a response this morning…benign! Big sigh of relief. I guess the left side of my thyroid just likes to form nodules .
Susan, both my younger daughter and my oldest granddaughter were born at Kaiser SF. All of my cancer care has been delivered by Kaiser Santa Clara. I know some people don't like being “restricted “ to using only Kaiser doctors, facilities, etc. But I have always been very pleased and the fact that communication between practitioners is seamless and there is no fighting for insurance approvals makes dealing with bc much easier. Just switched to Kaiser Medicare as I turned 65.
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Phew! Relieved it is benign.
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