My Husband, My Life, My Love, My Family, My Cancer
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Mel - congrats on the lower tumor markers but sorry to hear about your kid's great grandma.
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Emac, I find wigs are pretty easy for me to deal with. I generally buy them off Paula Young.com and usually the pixie sort. When I first started, I would pick a colour close to mine before swapping to blond wigs with roots. A velvet head band put on your head would prevent any chance of it blowing off, think velvet hangers in a closet. I buy her whisperlite wigs because they are open and stay cool. My picture here is me wearing one of them. Nobody picks up that they are wigs unless I mention it. People can also get toppers instead of a full wig if there is thinning out happening as well.
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Mara,
I love your wig. I would never guess that it is a wig. You chose wisely. I hope you are doing well and that the heat is finally subsiding so you can go on your walks.
Waving hi to Tanya and all the rest.
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I like Mara's wig too and definitely think that she would be a "go-to" person for tips and suggestions on them. Wigs and toppers definitely provide more options.
It seems like going through different obstacles and you start to notice that more people suffer from what you experience than just yourself. When I lost my hair during chemo, I noticed how many women have very thin hair for whatever reason and when I had to get both knees replaced in 2015, I noticed how many people have odd walks because of injuries or joint damage. It reminded me of a skit on Monty Python's Flying Circus when I was a kid and used to watch it with one of my brothers. I am one that does try to find laughter whenever I can and there are a whole lot of us out here in the world that are dealing with something.
Here's that skit that I was reminded of and I hope it brings a bit of laughter to some of you too because we all know that laughter is the best medicine.
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Mara~you're as cute as a button!! My gram used to use that phrase. I love your wig. You could pull anything off. I had one computer generation likeness of my own hair and I wore it twice. It was hot hot and I felt like everyone knew. It looked like. My hair. But it wasn't. I ended up giving it to another friend who had to have chemo and lost her hair, she asked me if I knew where to get a wig for free or low cost. I said sure. You can have mine. It looked lovely on her.
Thanks for the mention of great Grammy. She was important toUs she will dearly missed by my kids. When I was married to my x. I got quite close to her. So I'm very saddened as well. Lots of loss lately. Not liking it much.
Pocket duty for anyone who needs it.
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Mel, for me, I know people know. My hair changes colour every couple of days, same basic style as in the picture as this is one of the cooler ones. Short with little bits that can be brought out in front of the ears or tucked behind. Again, I go for the rooted wigs as those look the most genuine to me, velvet headband underneath, could withstand really strong winds. I always think it would be a good idea if a person had the money, go to a full service wig shop where some helps you try them on and would cut them to your desired style. Then in the future, easy to select a similar style.
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Lovin’ the wig chat. Hated wearing mine 14 yrs ago. We called it Dougal ( magic roundabout). Also I keep seeing Dougal on other women and he looks terrible! Not sure if I’d wear another although Mara looks fab so I checked the site you buy from… no shipping available sadly.
No need for me yet just thinking a ‘head’!
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Karen, you look great!
Laurie, thank you as well.
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one minute sound asleep the next eyes wide open. Insomnia is odd. I hate it. I have an oncology appointment tomorrow and I honestly hate them. I truly have better ways to be spending time than to be talking about the cellular assholes. Too much time is wasted on it. Let’s get a darn cure!
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Movingsoccermom - I think it probably depends on which treatment you are on and which systems are involved.
Mel - I'm so sorry, it seems we have a lot of loss in this group and it never gets easier. Hugs to you.
Cowgal - Thanks. I am trying different products. I think it just is what it is. I like my beanies and I'm getting better relearning to work with what I have.
I got my Pfizer booster on Tuesday and by Wednesday night had the full gammut of side effects. It caught me off guard because I had no reaction to my previous doses. I'm finally coming out of it. I haven't been that sick in a while, kind of scared me a bit. I have a bone scan tomorrow. I am expecting that this fracture in the right hip and the osteonecrosis in my left shin will show up but crossing my fingers that's it. My CT chest/abdomen/pelvis was largely good news. Here's hoping the bones are as well.
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hey gals, I did advocate stuff today in my local health region! There is an issue here that if you have a port you have to have your CT scan done at certain facilities where an RN is avail to access the port. And for me, several times it has meant that the first avail CT scan appt is not open to me, because it's in a facility where there is no RN & instead I get an appointment several weeks later at another facility. I called the Health Authority patient care department last week and today I had a long talk with a rep who took my complaint, and exactly the details... I really liked her. She wanted to know what my "ASK" is? (& I realized I think like this all the time. Let's cut to the chase. What's the ask?)
And we talked about policy, and how to make it more flexible and work in exemptions (or hire more RNs so all CT scan facilities can take pts with a port) & what my suggestions were from a pt pov. By law they will have to reply to me within 40 days with a response. It was a good experience and I was actually coherent & using all the right health system words..... and it felt good to be talking about this stuff - I forget how much I seriously legitimately enjoyed this part of health care (& why I was considering an MPH instead of a BSN degree for a long time).
On the other hand I got really busy with some things today and didn't get a chance to login to the Metastatic Breast Cancer Research Conference. I did see a depressing slide from it (which I posted in the steam room). Is anyone else attending the conference online? I hope to login tomorrow but I also have a busy day with another zoom in the morning so not sure how many sessions I'll catch.
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I have issues who can and cannot access my port as well. I have to have it to scan. We have several hospitals that I hop around to to get it done. It's annoying sometimes. Because, I've been in the wrong location before. They got me in, but still the scheduler scheduled the appointment wrong. Access port in one location? And scan in another ? I don't think that's a good idea. I have oncology appointment today from my blood work. I have low calcium this time. Maybe because I just don't eat. I'm not hungry. But like I said everything else was ok! Markers very good. So hopefully he'll issue calcium pills and I'll be on my way for another six months. But then I'll have to scan in March. Ugh! Scanxiety is real we all know.
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Moth,
I posted a couple of pages back about the tag #metastaticbreastcancer, and I was feeling exactly how you are now. That’s one way to bring awareness. There are many others that I am willing to do so that the researchers, scientists, doctors, CEOs, etc., focus on a CURE for MBC, not a way to just live with it. I completely support what you wrote in the Steam Room.
Oh, and good for you on the advocacy stuff. We need to ask…no other way to receive.
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Hi friends,
So today I attended several zoom sessions from the Metastatic Breast Cancer Research Conference. There were some interesting things but most of the research they were reporting on is nowhere near human trials, it's at the level of gaining better understanding of certain mechanisms of chemo resistance, what allows cells to metastasize etc. There was an interesting thing about brain mets for example where they discovered that often brain mets were not one seeding, they were multiple seedings from slightly different variations of other tumor groups in the body. These are all different things they need to study & understand because it changes how you try to prevent the seedings from happening in the first place... I'm not sure it's a conference I'd prioritize again for me, because while I used to love patho & biochem, at this point I'm more interested in things which are leading to clinically actionable changes in 1-2 years, not 5-10 yrs, kwim?
In between I missed I few conference sessions because I attened my local metastatic support zoom. Several new people and I was glad I went. Although guys, I had to breathe deep & count to 10 so hard because one new person brought up the "breast cancer is chronic" thing and ... well... I did get quite emotional because I was thinking of that slide I posted in the steam room, and no way, there's nothing chronic about a disease with such a short OS. So I unloaded on the poor person about that... oh well.... hopefully they'll come back & I didn't scare them off.
I went for an almost hour walk with Olive & my son because I was sick of sitting all day. Will do another walk tonight but shorter. Can't believe it's the weekend again - I feel like this week has just raced by for me.
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Mel, what a great name for cancer: cellular assholes. I'll have to figure out how to work that phrase in.
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Mel, I love that post!
Me
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I very rarely speak of my personal life, but I'm a bit melancholy. I have a dear brother-in-law (my sister's husband) who is dying from primary liver cancer. He was well and healthy 5 months ago and when I saw him today, he was jaundiced but still had his same sense of humor. He is so desperately trying to keep up with his fluids but everything - and I mean everything - tastes bad. He was admitted to hospice this week and my sister is well supported. His kids & grandkids keep him oriented daily. But, this afternoon, when I visited, he remembered my husband's and my 45th anniversary tomorrow. Twenty years ago September 11, 2001, we were to celebrate our 25th wedding anniversary & sending our oldest off to college. But, that all changed when our world stopped. Today, I don't remember how our dinner reservation with our kids vanished, nor do I remember scrounging around to find what was in the freezer. My husband and daughter were to leave in 3 days to head to her chosen university in San Diego - one of the most fortified naval bases in the continental US. My parents, in Long Beach CA, another naval base reassured me they were close and would be at a moment's notice. But, I thought at that time, the world has truly gone mad. We learned so little. Yet, life went on.
Today, my sweet brother-in-law wished us all good things for our future. All while he has none. We will celebrate with our family again tomorrow. Our daughter is now an ED physician, trying to withstand the horror of her daily work. Keep those who you love close by. We never know what a moment, what a few months or what our wishes will give us. Hold on to today - everyday.
Jane
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Thank you Jane, I needed that reminder. Wishing you and your family peace.
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Thank you Rosie!
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Oh, Jane, there are no words. Thank you for sharing your story.
Carol
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Jane- Hugs. I understand.
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Jane, I too thank you for your words.
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jhl♥️💐. So very true
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Well, having a lazy day here today. Waiting for another stepbench to arrive, using it to lift my washer up in the tub during use to avoid water in the motor and having to lift during the laundry cycles. Hopefully arrives soon.
Playing with a couple of copper coloured wigs my friend gifted me. Did not like the curls so using the cooler temp on a hair dryer, holding the dryer further away and a brush. Got one looking more like my pixie ones and it started out with some strange curls. Will work on the other two as well with the same method.
Hope everyone is doing well, thinking of those who are not as well. Remembering all those who were lost today in 2001 and those heroes who ran toward it to get out as many people as possible.
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Mara, I always enjoy lazy days!
Yesterday was a good friends birthday, so we’re having him and a few friends (5 including me and DH) over for BBQ. DH got a new smoker and cooked a brisket yesterday. Unfortunately, while the internal temp was good and well monitored, the flames below were too hot and I dried out, a lot. DH tossed it and I just hit the local bbq for take out. We’ve got pulled pork, beans, slaw and beer, so my day is looking good.
Hard to believe it’s been 20 years, like many, I remember the moment well. DH and I were traveling back from California and had been watching the news for traffic before getting back on the road. I told DH a plane hit the WTC, “how does that even happen?”, he said “they’ll probably says it’s terrorists”. The 2nd plane hit as we watched and we looked at each other and knew this was a huge before/after life changing moment. As we drove back to Texas, it was so odd to not see planes anywhere. It’s still hard to hear/see actual footage of the event, I feel the terror in voices and on faces so much, it gets exhausting.
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I also can’t believe it’s been twenty years. I remember where I was as well. Right in front of my television I was watching the today show and we saw it happen live the second plane hit the second tower. We knew that second nothing would be the same. The eerie feeling of not hearing any air traffic is something that I can’t explain. Like the calm before the storm. Think about it. 4 planes stolen purposely flown into buildings one into a field because of those heroes on that flight. What a day. A day I’ll never forget.
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I remember so well - I was working in downtown Detroit on the 40th floor of the Penobscot building. I had the radio on and the local dj mentioned a plane hitting the WTC. Then the reports started that it was a large airliner. Staff all gathered in the conference room to watch TV. With horror, we saw the second plane hit. At that point there was some degree of panic for our office, especially as more news was received about the Pentagon. We were 2 blocks from the Detroit River which divides the US from Canada. We were 4 blocks from the Renaissance Center, home to GM. And across the street was the Federal Courthouse. And a short time later, our messenger/errand person came in saying there were military personnel with weapons surrounding the Federal building. Our senior parter was starting to hear about other offices closing, and let us go as well. I grabbed my things and hustled the 2 blocks to the parking garage to try and beat the whole downtown area as it emptied. As I crossed the first street, I glanced to the side and saw the military and their guns. Then I went home, watched TV and practically cried all day.
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I can relate to crying all day. My kids were five and four . I felt so vulnerable planes flying over Pennsylvania where I live. So surreal and terrible.
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People always talk about remembering how blue the sky was that day and its true - the day before as well. And I was on the west coast!
At the time I was in grad school living in a shared house with a roommate and his father called very early, must have been about 545, before 6am at least, just after the first plane hit. Our rooms were next to each other and I heard the phone ring, him get up and go into the living room to turn on the tv and tell his dad he would call him back. Then he came to my door and said in the strangest, flattest voice I have ever heard "you need to get up. you need to see this." So I got up and went the twenty feet down the hall where he was standing in front of the big screen tv and oh, to see the first tower burning and talk about how a plane crashed into it. We must have had the Today show on, maybe CNN? I couldnt comprehend it at first thinking how an airliner would have flown into a building like that - Im a big aviation nerd and know more than most people about airspace restrictions and aircraft capabilities. Logically there was no sense to how a crash could have occurred and yet there it was on tv. And then the second plane hit and it was pretty clear that this was no accident.
I remember seeing the people jumping in real time, before the cameramen realized what was happening and cut away. We sat together for hours watching as the towers fell and the other planes crashed and it seemed like all that bad news was never going to stop. Felt so sick to the stomach but you couldn't look away.
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