hospice: the final chapter (no, not me)

Posted on February 23, 2026 by carla

The past couple of posts I have written about someone with a truly awful cancer situation who was in my life for a fairly long season. I use the word “season“ as in that old saying of people are in your life for a reason, season, or lifetime.

We recently learned, and “we” meaning mutual friends and myself, that this capricious and rather complicated woman we have known is now on hospice.

I am really sorry she’s on hospice. For someone of a certain generation who did fight so hard for her version of independence, to have basically had independence removed from her in this very final stage of life is cruel. But cancer is cruel.

I sit here from my cat bird seat as a survivor. I am reminded again that I am one of the lucky ones thus far.

And being a survivor has its own complicated set of emotions. And when the emotions of a survivor get complicated more than just on normal days, it’s when someone else is on hospice.

This time the feelings are complicated not because I feel guilt that this woman is dying and I am still alive. Honestly, it is the simple yet complicated feelings of saying goodbye to someone who has abandoned many people in her life at this stage and before, including me. However, like it or not, that is her choice, and a choice that I am respecting by staying away.

The goodbyes I say will literally be to the air. When people are on hospice you have to honor the fact that your place might not ever be at that person’s bedside, even to say goodbye. I think as human beings, that final stage of life should be as much on the terms of that person experiencing end of life as humanly possible.

She still has two children who are alive, and grandchildren. I’m glad the out of town child came to town, and I will admit as it is close to the end that I did message this one child and tell them to come now and not wait. I figured I could do that because their mother was already mad at me for something I actually didn’t do, so it wouldn’t matter if she found out anyway.

This woman has had a very complicated and often sad life. As much as we try to live our lives on our own terms, sometimes the very DNA we have inherited is a real bugger.

Now that we are reaching the end of her life, I can admit that when I first became friends with her years ago, people warned me to have care being friends with her. Literally, I had people tell me that she could be cruel and mean, and I thought “oh they’re just exaggerating.” But they sadly weren’t, and that is a lesson learned, but I still don’t really regret the time I have known her. If you were on her good list she was interesting to be around.

When you get a cancer diagnosis, it’s a game changer. I do believe this woman has used her cancer diagnosis to manipulate people in her final stage of life and I think she has done that in a lot of regards just out of plain loneliness. I don’t think it’s right, but it is what it is.

Like I said, this woman is a complicated person. She does have many admirable qualities. I will never say she was a bad person. I will say she was a complicated person. I do believe given her age, part of the complicated parts of her personality weren’t just genetics and inherited traits good and bad, but a reaction to the world around us.

She grew up in a time when women weren’t supposed to be independent on any level. So imagine how complicated and difficult that must’ve been for any woman who could not comfortably assimilate? But that also begs the question of are we all truly assimilated? Do we as women, never rail against bullshit?

But I digress.

In my opinion, there have been times during this woman’s life where she made decisions that probably weren’t the best. But to an extent that is merely any of us being human. If we don’t make mistakes, we don’t learn, right? But what happens when you keep making the same mistakes?

This woman lost a daughter to cancer. I met her not long after she buried her daughter. She has never let go of the grief or that loss. And I’m not judging, because I don’t know what it’s like to lose a child before you leave the Earth.

But as our friendship grew, she used to refer to herself to me as being my “other mother “and I was her “other daughter.” Sorry not sorry, I’m a human being and that felt really nice to have someone think that of you and feel that way about you. 

So yes it was hard when she decided I had done something I actually had not, and that was her excuse to cut me out and be angry at imagined transgressions. And then after that, I saw this end of life document she had given to people that referred to someone else again as her “other daughter.” The realist in me now knows is that endearment was merely a form of manipulation. I don’t hate her for that, it has been the way she survived I think.

I will be purely female and note that after she gifted me some vintage napkins that no one else wanted she contacted me after the fact and asked for some of them back to give to this particular woman, the current “other daughter.” I have never met this particular woman, and the person who is dying has always kept certain parts of her life separate and compartmentalized.

I don’t know how long hospice will be for her. She seems to range between she might have another year and even though she’s on hospice and taking hospice meds, she can drive, and she’ll be dead by the end of the week. I don’t know if she will make it to see the redbud tree in her garden bloom again.

I thought of contacting her to say that I knew, and I wished her a peaceful transition, and then I thought better of it. It’s not my place to be there now. And I have heard of the parade of people in and out of her home, and with some I think that’s kind of selfish. I wonder are they there for the right reasons or just to have a looksee?

And I keep thinking of all the germs they will bring into a very small house to a dying old woman who was immunocompromised before the cancer diagnosis. But I also feel she has been so lonely for so many years of her life, that she needs this. It’s like she’s holding court and she’s a queen.

By her own description, her home has very steep and narrow stairs. Soon she won’t be coming down those stairs, so that means people will go up the teeny tiny staircase in the little house and she will be in her bedroom surrounded by the quilts she made. That’s a visual she would like.

This woman who was a longer season of my life, will always be remembered in part fondly and with love. She was supportive of me during my own breast cancer journey, and I will always be appreciative of those people. She was at my wedding. We shared a love of gardening and she taught me a lot, and she taught me that I could can things and gave me a beautiful jam book once.

Now that I am on the outside, looking in, I have realized a lot of her relationships with people were about carefully crafted control. That’s just how she has survived. Sadly, I think I just no longer have a use. Some people are just like that. 

She’s honestly being a cancer/hospice manipulator. She said to someone over the weekend that it’s just wonderful because now she has people coming in and out. She has some people that she lets in and then she crosses them off the list and is obnoxious about it. She has a woman making soup for her that I never even knew she was connected to in any level, and that’s just taking advantage of a vulnerable woman who has problems of her own.

And then there’s someone that she really hadn’t bothered with until she needed things again and called that person this morning demanding pretty much that they go out and pick up something for her at the pharmacy (not a prescription) and this person’s driveway hasn’t been plowed and neither have half of the roads. Of course we all know that you can have things delivered on services through the chain pharmacies and big platforms like Instacart. Or even Amazon. And she actually does have an aide. And if the aide is coming, the aide can bring whatever and she can reimburse the aide. She also has a child who’s not that far away and quasi-local. It’s their mother and they never bothered with their mother it seems, and she makes excuses for this particular one, who is not a child, just seems to act like one.

Yes, she has two very different surviving children, whom I think are still both damaged by a some of her life choices.

When she is gone, everything about her life that can be sold, I believe will be sold. Hopefully some of the parts of her familial history that she was so proud of will be maintained by others, but honestly? I worry more about her little dog. I don’t have room to take that little dog, at one time I thought I would, but life changed and I don’t think it would be fair to that dog. I just hope someone gives a damn enough about that animal that she has a nice soft landing for her final senior years.

I know she was not happy when I told her that I wouldn’t be able to take her little dog in the end. But I have a dog going through cancer treatment, and I know I cannot be properly responsible for another creature right now.

I realized recently, that literally for the many years I have known her, I was never once invited inside her home. She was in and out of my home all of the time. However, I do know that a lot of people weren’t ever invited in. I always just took it as that’s her private space and her sanctuary and it never really bothered me to be honest.

Hers is a cute little house on a tiny tight little street. I feel that little house indeed became her sanctuary. I actually understand that feeling, because mine is my sanctuary. I love my house, but I’m lucky because I share it with someone I love beyond measure. She doesn’t have that aspect and has spent a good deal of time in that house alone.

The house has kind of lost its luster as she has aged, basically because there are things she has not been able to keep up with. One of her children, the one I don’t care for, lives closer. There are so many times they could have come to help her, but they didn’t even visit her half of the time. The cross they will bear after their mother is gone, is undoubtedly guilt because they were literally a shitty child who spent their entire life, punishing their mother for things that were beyond her control.

This is a curious position to be in for me. I am kind of watching someone who was once very much in my life for quite a while, die at a distance. In some moments, I am a bit sad, but another moments it’s a weird observational feeling, and I’m almost grateful that I’m not in the mix of this last chapter because I think it’s gotten very complicated and will be even more so after her death.

The one thing I keep coming back to is, if she hadn’t stopped going to a gynecologist years before I even met her, would she necessarily be going through this horrible cancer? I don’t know that we will ever know the answer to that question, but it does more firmly cement in my mind again how even if we get tired of going to the doctor, or we just don’t want to go to the doctor that we have to go to the doctor.

I don’t know how long she will last on hospice and I think I will choose to remember her in my garden when the seedlings of the redbud trees that she gave me bloom and the crazy red daylilies she just decided she didn’t want any longer because they interfered with this clothes drying thing that looks like an inverted umbrella without the umbrella fabric.

When we go, we are remembered by people for similar things and different things. Most people will remember her for going to her local township meetings almost religiously every week. Of course, if they knew her better, they would know part of the reason why she went to those meetings is because she was lonely.

Other people will remember her from doing charity work in Haiti.

Others still will remember her when she went by the diminutive of her name and was in a garden club.

Most of us will remember her for being a fierce defender of women’s rights, and in general human rights. Unwaveringly and almost militantly liberal in her political beliefs if you really knew her, you will also know how it is probably a gift that she won’t see how much deeper this country will fall into despair versus its original reasons for founding.

We all will remember her for her art of storytelling. She’s one of those people who was a child during World War II and her recollections and little verbal vignettes of what life was like was always interesting and then there were the deep roots of her family going back to essentially the very founding of this country. I am a perennial student of history and I love those stories. 

At the end of the day, I will try to remember her fondly, perhaps not with the degree of love I once held, but I will remember her for the most part as being a rather nice long season in my life until the season was over. I will definitely remember our fun gardening trips to Lancaster County, laughing all the way home because the car was so loaded with plants.

I will also remember that the society she was born into and railed against, conversely she also desperately wanted to belong to. Will I go to her funeral? I honestly don’t know, and it could also be a private family affair after she’s gone because that’s what her family can deal with. 

The final moral of the story here is if you’re a woman, please don’t ignore the annual check ups you’re supposed to get.

I have thought about waiting until she’s gone and publishing this posthumously, but I think I will just publish it quietly now. Yes, I did it one time think of her as another mother, but as much as I often chafe with my own, who is very much alive, she can’t replace her. Just like none of the women in her life could replace the loss of her daughter years ago. But do I think after a fashion, that she manipulated me a lot of these years? Perhaps, but I think I can also forgive her for that as much for me as for her. 

Reasons, seasons, lifetimes. Such as the cycle of life and our human interactions.

Thanks for listening.

Posted in breast cancer | Leave a comment

a winter of discontent?

Posted on January 20, 2026 by carla

You know you never want to be critical of people with cancer because we all handle it differently. It’s a disease with a very public face, that is a very private battle. It’s a battle that is painful emotionally and physically.

But I think I have a bit of a cancer manipulator in my life, although they’re really not in my life anymore. So this is reflection and observation.

Almost 20 years ago I became friends with a woman who I thought was wonderful. Older, strong, seemingly so independent. Her kids were grown and were my age and older.

I’m met her before I had my own breast cancer, and she was kind and upbeat when I was going through breast cancer.

The years went by and we actually became what I thought was close friends. To me she was kind of like a bonus mother. She seemed very cool and she got me. We all like people that get us. At the time, I didn’t pay attention to the fact that she had her life segmented and mostly we did not crossover.

But now I wonder did she get me or was I just convenient for a number of years for whatever reason?

Last year at some point, she was talking about her son’s daughter in law by marriage. She had a very aggressive breast cancer. She made some comment about how expensive breast cancer was and that her daughter-in-law would have to help her son. I literally said well she’s done well for herself in her career, of course she will help her child in anyway possible.

I only knew about the career because my then friend had said something. Mind you I can’t remember her daughter-in-law’s name half of the time, and I’m not saying that to be mean or rude or dismissive. It’s just the woman doesn’t mean anything to me. I guess we are close enough in age, but she’s not anybody I’ve ever met so the name doesn’t stick in my head.

That was taken as a large affront. I was told I was inappropriate. I remember the time I apologized and said I didn’t mean anything by it other than a comment which wasn’t derisive, it was kind of in my head the natural thing or order: a mother takes care of her child no matter how old the child gets, and that is bad to say?

So I just let it go. She’s older I had noticed her personality was changing as she was aging and I tried to be respectful. After that point, I think that was used as an excuse to start to carve me out of her life. It was also about that time that I wondered if she was sick. Because sometimes when we would have conversations, she grew very repetitive or she wasn’t quite tracking and this is somebody who is an extraordinarily bright human being.

But this all turned into eventual radio silence, including not picking up the phone when I called on Thanksgiving, so I sent a text and got almost an abrupt reply.

Now this is someone I’ve always known who can be almost capricious about her relationships if you’re looking at it as an outsider. But people deal with things differently. I figured I really didn’t know what was going on but out of respect for a friendship that had a longish duration I just sort of was quiet about it.

Then I find out from someone we know mutually somewhere in December that she was sick. That it was cancer and it was bad. And it was also a gynecological-related cancer.

That really resonated with me because I remembered when she told me when I first met her how she was no longer going to a gynecologist because why should she? She was old and not sexually active. Of course I remember when she told me this because it was one of those wince worthy things that you didn’t want to hear from your own mother, let alone an older friend.

So then I started hearing from other people who were all told by her not to tell me. And it wasn’t not to tell me because she didn’t want to upset me or she hadn’t told me yet. It was a control thing. It was a punishment. I’ve kind of seen her behave that way towards other people I just never experienced it.

So I you know, thank the people for telling me and said you know I’m not going to be talking about it because it’s not my story to tell. And that’s the truth. I want to be respectful of this woman’s timetable for telling anyone her news. 

Christmas came and went and so did New Year’s. Recently the phone rang, it was my friend except was she really a friend at this point I didn’t know what I was at this point other than discarded.

I let the call go to voicemail at first because I wanted to see what she said and then be able to decide if I want to call her back. Not being mean I just didn’t feel like being some kind of weird emotional punching bag and that was my initial reaction to getting a phone call after so much time.

And you have to understand that this was someone who for years was in my life almost daily. And while she was in my life for the most part, I enjoyed it. Because she was interesting and bright, and taught me stuff about gardening and other things. And she seemed to have such a generosity of spirit.

The message I was left was rather perfunctory and almost like we had never known each other. You’d have to hear the tone to understand and obviously I’m not going to share that.

I played the message for my husband, and he said well you should call her back. You know something is wrong. He said just rip the Band-Aid off. See how she is.

So I did. I called her back. It was like a three minute conversation first she tells me she has terminal cancer, then she tells me she’s getting a special grant like the pharmaceutical company did it just for her for some kind of immunotherapy. I just listened because I don’t understand hospital systems that throw lots of stuff at a diagnosis that’s already supposedly terminal? It seems almost cruel.

So about a minute and a half, and she decides to dig in to why she was no longer speaking to me. And it went back to that phone call all those months ago. Then she accused me of researching her family and invading her privacy. And I literally said “what?”

No, she was on speakerphone so my husband heard the whole conversation. After she says that, this great pronouncement I said to her, I didn’t do any such thing. And I hadn’t and then she hung up on me.

I could’ve called her back, but I just decided not to.

I said something she didn’t like that was not ill intended, and you know it was just another example of acting irrationally. I also didn’t call her back and I’m not going to because you don’t want to upset someone with a horrible cancer diagnosis. So I’m kind of grateful for the years of friendship and you know she’s taking her journey at the end where she wants to go.

But to me, that is not the end of the story. Since this time she’s been running around telling people about her diagnosis, including the town government , where she lives.

As the news has gotten out and people who know her watch who she’s told and how, it becomes a really sad story. This is a bid for attention. We all know that she’s been lonely, and with every year she’s aged, she’s spoken about well end of life stuff. 

But she’s using her cancer, so people pay attention to her. And to me that’s cancer manipulation. Just my opinion, and I am trying to show empathy and sympathy, but she’s leaving a discarded trail of people who have cared about her for years in her wake.

So she will live out whatever is left of her life, and I hope for her sake the treatment she’s putting herself through gives her viable time. But honestly, I’m just afraid it’s going to wear her out faster. But that’s her choice for her treatment. Of course, the funny thing is I remember having a conversation with her about cancer years ago and her saying if she got a bad diagnosis, she would never put herself through hard treatment.

She wants attention and the lime light and I hope she gets what she needs in this last stage of her life. I mean that most sincerely after she hung up on me, I did send her a letter telling her that I was sorry she had received this diagnosis, because I really am. But I did honestly tell her I didn’t do what she accused me of and that was unfair, but essentially I’m not going to continue to argue with her to change her mind because I don’t wanna upset her while she’s going through cancer treatment. I also said that if she wanted to talk or whatever she just had to let me know.

And that’s where I’m leaving it. You have to respect people’s boundaries when they’re going through cancer, and I am one of the lucky ones, but I do remember what it felt like when people didn’t respect my boundaries as I was going through my surgery and subsequent treatment.

People process things differently and that is just the way it is. I’m glad I knew her for so many years, but if I’m honest this person, I really don’t know.

Given the type of cancer, she has realistically she could just have a few months left. And I hope they go well for her.

But it is a little sad to watch someone manipulate people via a disease. And it makes me wonder if we all do that as we’re going through our cancer battles? Is that a mode of survival or self preservation?

It’s an interesting point to ponder.

But some people get very angry when they get these diagnoses, and they don’t let it out, and it comes out in other ways. Or there was a simmering anger you never realized in the person before and cancer rips a Band-Aid off.

I’m not sure if this is going to be a public post at this point or a private one. I have to think on it.

But I thought I should write about this because it’s like yet another stage in this twisted journey once you’ve gotten your own cancer diagnosis. there is how you react to your own disease, and how you react to someone else’s.

What’s that saying about people are in your life for a reason, a season, or a lifetime? This is just another season. 

Posted in breast cancer | Leave a comment

pettiness and cancer

Posted on December 28, 2025 by carla

I have an older friend. For years, she was one of my rocks, but eventually, as is the case with most humans, the cracks show and I think she will end up being one of those people who was close to me when she was on the outs with other people.

Why do I say that? Because there are people she was on the outs with that she is now no longer on the outs with, and I am on the outside. Those people on the inside are more advantageous to her at this stage. That happens and that is her choice. It’s also a pattern. It’s just kind of sad and disappointing. 

It’s one of those things where there was no argument or scene or anything. She simply moved away from me and some other people during this past year.

About six months ago, I suspected she was sick. But she’s one of those people that knows better than everyone and nothing happened.

Well now that I am being carved out, I find that I was sadly correct. And it’s cancer, and it’s not nice. It’s cervical cancer that has spread to her bowel which also means it’s may have spread other places.

As I understand it, she will be starting chemotherapy in the new year. Or maybe it’s immunotherapy, I’m not sure. 

She’s been playing whisper down the lane with people and she tells a couple of people. Then she tells mutual friends that she needs to speak with them, but they can’t tell me. I don’t know what the game is, but I’m not playing.

There is one thing I learned from my own breast cancer experience, and that is people choose whom they want to let in. And you have to respect that during someone’s cancer journey, and I will. But the way this woman went from telling me she loved me and I was like another daughter to carving me out is almost cruel. And you feel these things more acutely during the holidays.

But humans are flawed, and I will let it go. There is no point. If she wants to talk, she can contact me.

I did send her a letter before Christmas to tell her I was thinking of her and that I did love her, but she would have to decide what she wanted to do as a path forward and then I suspected she was sick. I said in that letter that I wouldn’t shut the door, but she was going to have to contact me if she wanted communication.

I also did say which she’s wouldn’t like that I thought one of her children, her oldest son, treated her like hell. Because that’s the truth he is the physically closest child to her, and he can never be bothered to put his own issues aside to see his mother. And at some point, we have to stop blaming our parents for things and act like adults. And he’s in his 60s. Instead he behaves like a passive aggressive practitioner of elder abuse.

But this woman is drawn to bad relationships with strife. I think this will make this part of her life journey more acutely difficult than it needs to be and I do feel for her. I hope she can find her positive and her hope and not cling to the false hope that this son will make this anything other than about him.

Cancer is a public facing disease that is a truly private battle for everyone who faces it. I did spend some time this week being angry at different times because this is one of these older women that decided 20 years ago she wasn’t going to a gynecologist anymore. Maybe if she had gone to a gynecologist over the past 20 years she wouldn’t be facing this. This is why it is so important for women to maintain regular healthcare.

Given her age, I hope she outlives at least part of her cancer. Hers is a study of periods of life tragedy. Life can be joyful and it can be painful and cruel.

I don’t wish anyone the journey of cancer. But it’s not the time to be petty with people who care about you, and that’s what she’s doing.

Again, I’m respecting her need for space. But lashing out at people who care pushes them away, which is why we are often faced with life’s conundrums isn’t it?

I am not the one who’s going to insert myself and someone else’s personal cancer journey. I wish her the best outcome. And I hope she does ok.

I had to mull this over for a few days, but I think it is my only choice here.

Please, if you are a woman, don’t ignore your health checks. I hate all of the appointments that seem to keep materializing with each year, but I know that I have to keep that schedule. And I will be honest, it is really hard for postmenopausal women to get regular gynecology appointments. I actually missed the entirety of 2024 because I couldn’t get on the schedule. But I didn’t skip this year. I just kept calling until I got an appointment.

We now live in a country where our healthcare and access to it, are prioritized by our bank account. If money is no option, you can get any appointment you choose, but if you have to play by the rules, use health insurance and live a more moderate and modest life it’s a lot of effort to get things done. It shouldn’t be this hard.

Even as a breast cancer survivor, it was hard for me to get an actual mammogram this year. And that is something I can never, ever skip.

My wish for 2026 is somehow healthcare can be on a better path in this country without the mad men controlling it. I know, I know if wishes were horses then beggars would ride, but a girl can hope.

So these are my thoughts as this year draws to the close. I am grateful that I have completed 14 years cancer free from breast cancer. I still know that I am one of the lucky ones.

Pax.

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it helps with lymphedema, but insurance companies make it cost prohibitive.

Posted on November 2, 2025 by carla
This is Alexa who came from
Tactile Medical for my
demonstration recently.

Yes, it looks like something out of Lost in Space. It’s an at home machine to help with lymphedema. I meant to post this during breast cancer awareness month but honestly? I have a dog going through cancer treatment and it has been almost a full-time thing between surgery and her chemo.

I have lymphedema after 14 years in my left arm where the sentinel node was removed. My case is mild compared to what I have literally seen with my own eyes in others, but as was the case with the lymphedema in my lower left leg, I am treating it early.

In my arm the lymphedema is more tricky and a little worse. My leg is obviously easier to massage to get everything moving. One armed massage is hard.

Yes this is my arm inside the sleeve for the lymphedema machine.

I go to lymphedema physical therapy which is in fact lymphatic massage. It helps with circulation within my lymphatic system which was damaged during breast cancer and knee surgery.

There are not enough lymphedema certified physical therapy practitioners out there in the U.S. which is why I was curious to try this home machine.

The machine is from Tactile Medical. They came to my Penn Medicine Physical Therapy Clinic to give me a demonstration.

Here is their website:

Lymphedema Treatment Solutions

I had many giggles being fitted for what is essentially a lymphadema jacket. It is as close to a space suit as I will ever get! So I got fitted and they hooked me up to the machine and off we went!

Guess what? It works! It actually worked really well. It is the weirdest feeling at first as the air pumps through the “jacket” mimicking the actual human hands version of lymphedema physical therapy. It’s oddly relaxing even if you slightly feel like you are inside a water bed for lack of a better description. It is gentle waves and a very slight sensation of pumping.

What’s the catch you ask? Simple. Freaking health insurance. They make it cost prohibitive. For me, not on Medicare with good (and expensive) health insurance, my out of pocket costs would be over $6000! And that is up front money. If I was on Medicare, my cost would be literally a fraction of that amount which seems grossly unfair.

Why is it in 2025 the cost of healthcare things related to breast cancer is still so out of reach? It’s ridiculous. Look how long it took women to get access to Mammogram tomography machines, also known as 3D mammography? And I have first hand experience with that as given the nature of my tumor until tomography was approved in the US, for the first few years post breast cancer I had to pay the co-pays of $250 each time for MRIs with contrasting dye. And we all know as survivors how many mammograms etc. there are the first few years post breast cancer.

I can’t justify the cost of the lymphadema jacket for myself mostly because I know I really don’t need it at this time. But what if I did?

It’s time for politicians and insurance companies to collectively get their heads out of their asses. It’s bad enough that we all have to worry about what will be covered by health insurance in this country come 2026.

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in honor of breast cancer awareness month it’s time to remind you that this disease is neither pink nor fluffy.

Posted on October 8, 2025 by carla

Here we are, another year, another Pinktober.

It has taken 14 years for me to realize the problem is not the fact that it’s October and it’s about breast cancer awareness, it’s still about all the pink crap that manufacturers shove it us saying it’ll do good.

Year after year, I check into the minuscule proportions of profit that manufacturers who try to sell you pink crap during Pinktober donate.

Year after year, I can’t believe people haven’t seen through the various marketing schemes.

Breast cancer is neither pink nor fluffy. I’m sure the pink color as identifier is because more often than not. It’s not just women who get breast cancer, men also get breast cancer.

If you want to support breast cancer awareness, it’s not being done with a cheap pink bracelet. It’s being done with the brave men and women, many of whom you never know existed who are just trying to live their best lives during an after breast cancer. It’s being done by the caring medical professionals and legitimately good nonprofits trying to help people.

If you wish to support a nonprofit look for the local ones or the smaller ones in your community that actually really help. One I think in particular is wonderful in the Philadelphia area is Unite for Her. I was introduced to them a few years ago by a woman who believes in what they do. They offer programming and they get women together in fellowship. They offer practical information and they offer support. I’m not necessarily talking about financial support, I’m talking about that friendly ear or programs that help, or even someone to babysit so you can go to a doctors appointment.

https://uniteforher.org/

https://www.facebook.com/unite4her

This nonprofit was founded right in the county where I call home in Pennsylvania. They have wonderful programs and zoom calls that you can participate in and more.

And of course, another nonprofit that I will always and forever hold dear is breastcancer.org – this was founded by my radiation oncologist, Dr. Marisa Weiss.

https://www.breastcancer.org/

The need for positive education on the topic of breast cancer or cancer at all never wanes. I realized that the other day when I was updating my friends about the state of my dog going through cancer treatment. It was like when I got my diagnosis you had the people that were normal and then you had the people that were negative to the point that one person said that they were sorry they knew it was hard to lose a pet. I was thinking what are you talking about? My dog is very much alive!

It’s funny it really annoyed the crap out of me just like when I was newly diagnosed and there were people that had me 1 foot in the grave 14 years ago or were trying to sell me iodine cures, or other quack based treatment for breast cancer.

It’s that ignorance out there that makes me say every breast cancer awareness month hey it’s not pink. It’s not fluffy. It’s not about pink plastic crap, or some stupid bracelet that has the majority of profits going into the coffers of the manufacturer.

I think it is just as important for people without breast cancer to be educated on what it’s like to have it. I think it’s important for people to be educated on what actually helps.

And I think it’s important for the public in general to be educated about the pink plastic crap and dumb stuff that manufacturers put out during the month of October to say they support breast cancer awareness.

I sign off stating once again I am one of the lucky ones.

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lymphedema encore

Posted on August 4, 2025 by carla

So my lymphedema is back and now it’s in my arm. The lymphedema is in my left arm where the lymph nodes were removed 14 years ago June 1. I had previously had lymphedema in my lower left leg, and it’s still flares up sometimes but it’s much easier to massage your leg than massage your arm with one hand.

I have been fighting with this often on for about a year I think. I thought wearing a sleeve more often, etc. would help. And by sleeve I mean compression sleeve, but it’s not doing the trick, and I discussed it with my oncologist at our now annual visit and he agreed that physical therapy was the right choice.

And I need to inject here that a lot of women do not know after they have had breast cancer surgery that physical therapy for lymphedema is available to them. It should automatically be included with your breast benefits, so to speak, but a lot of women myself included don’t know at first. 

And I had an excellent care team, but I did not show any signs of lymphedema after surgery consistently or when I was doing treatment and seeing my oncologist more frequently than today 14 years later. The lymphedema in my left leg was the lower left leg and it surfaced after I had meniscus surgery on my knee and it goes back to the you’re not supposed to do anything on your left side much if you can avoid it after you’ve had lymph nodes removed. I never have blood pressure on my left arm. I don’t have blood drawn on my left arm or IVs, and I’ve noticed things like simple bug bites take longer to heal on my left side now versus my right and that all has to do with the lymphatic system.

So now I’m back for physical therapy, which in 2025 is significantly more expensive than it would’ve been if I had needed it 14 years ago.

My lymphedema in my left arm is not extreme, so I am hopeful that once again, I will have a good result.

That’s all! Although this is new in this arm, it falls under maintenance Post breast cancer. 

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reflection

Posted on July 5, 2025 by carla

Because of the bizarro world of when insurance allows you to schedule your mammogram and when your hospital system has availability, I didn’t get my annual screening until July 3rd.

It was the same old irritating apprehension a few days leading up to my appointment and a sleepless night. It just happens. Once you have had a diagnosis you are always going to be a little antsy.

Sometimes when you go you are the only one in the dressing room/waiting area. This time it was a few women all different ages. It’s a weird kind of camaraderie.

I was taken in and had my mammogram and the tech as always was so nice. When I came back into the dressing room/waiting area there was a woman younger than all of us who was just beginning the journey of she didn’t know what her diagnosis was yet. Up until that point I think I had been the only actual breast cancer/cancer survivor/patient.

My heart went out to this woman because she was having a hard time getting things scheduled and getting the doctors she needed because of all the overcrowding in the area and shortage of doctors and technicians.

Southeastern Pennsylvania has seen many hospital closures. So every area of healthcare is affected. And government officials talk a good game yet somehow magically no new hospitals open. And healthcare costs are skyrocketing again. People should be able to get access to the healthcare that they need. I periodically think what if I couldn’t wait for my appointment? 

This country just seems to make everything harder these days. And I’m saying that as someone who pays for my healthcare who has always paid for my healthcare. I’m not looking for handouts. I’m looking for reasonable costs and to be able to meet reasonable expectations.

As women we learned far too quickly that we have to be our own best advocates. After my appointment, I went upstairs to my gynecologist’s office suite to make an appointment. I realized I had never a regular gyno annual in 2024 because I couldn’t get an appointment. I’m in menopause and I’ve had a full hysterectomy so I’m not a child bearing years or having babies , which means that I will stand back and wait because there are so many women that need to be seen more immediately.

Well I will still be waiting for an appointment because it’s that busy. I’m not complaining because I know I will be seen, but again what if I was someone that needed to be seen more immediately? 

There are a few things I find as exhausting as the healthcare system. I get tired of making appointments and going to appointments and I will be going back to physical therapy because the lymphedema is manageable in my left leg but now it has appeared a bit in my left arm. I made the appointment more than a month ago at this point and I’m still not getting in until August to start again. Again, at this stage of my life right now, I can wait. But what if I couldn’t?

I feel like unless you’re in like the top 1% or 2% economic percentile, you are a second class citizen in this country. it shouldn’t be so goddamn hard to have access to care, especially if you’re dealing with something like breast cancer or even if you just want to see your doctor. 

I don’t pretend to have solutions, because I think this country needs among other things a complete political overhaul so things like healthcare and women’s health aren’t constantly politicized and WEAPONIZED.

And the fact that Social Security sent out something so Pravda on July 4 about the big shitty bill passing was something I never thought I would see in this country. That bill is going cause people to lose benefits, and the politicians in this country obviously don’t give a shit because otherwise it would not have passed. I don’t know about you. I am tired of politicians playing politics with our lives, while we pay for their healthcare as elected officials.

But I don’t think I have much fight left in me right now. So we’re keeping our heads down and trying to survive. I will leave you with the news that my 14 years being breast cancer free is official with the report coming back from my mammogram.

Take the life blessings as they come.

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fourteen years.

Posted on May 30, 2025 by carla

June 1 it is an amazing 14 years since my breast cancer surgery. I am one of the lucky ones, and I have always known that. I have lost friends over the years to breast and other cancers.

Today was oncology as in my oncology appointment. Because of the musical chairs and circus that is health insurance, I can’t have my mammogram for the official all clear for a few more weeks.

I still find the health insurance circus maddening. You are paying for service yet somehow it always seems to be made as difficult as humanly possible.

I still have the same oncologist and I’m still as fond of him as always. And remarkably, it’s still nerve-racking going to the appointment.

Minus the actual mammogram, I’m still all clear. I do however, have to go back to physical therapy because now I have lymphedema in my left arm officially. I’ve been dancing with it for months but now it’s official so I will do physical therapy again because it really is helpful. It’s just expensive. Everything with breast cancer is expensive.

Everything with health insurance and healthcare today is expensive. But at least I have health insurance and good doctors. I am well aware that not everybody has that. It’s almost a luxury.

I am now 61. I was 47 when this all began.

Today is a happy almost anniversary to me.

Anyway, here I am, still standing. Please get your mammograms. 

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compassion about cancer. it’s lacking in the u.s.a.

Posted on May 22, 2025 by carla

I unfriended someone on Facebook the other day, an older man as a matter of fact, for his obnoxious commentary about the former president’s prostate cancer diagnosis.

My late father eventually died of prostate cancer that metastasized elsewhere after initially only being some cells, and I want to think that people should be able to be better humans about anyone’s cancer diagnosis.

Leave your goddamn politics at the door because cancer doesn’t recognize gender, politics, socioeconomic level, or anything much other than it ravages your body.

One of the comments I saw about Joe Biden was something along the lines of well they guess if they could’ve hidden the diagnosis they would have. It’s cancer and cancer is very personal. It has a public face as a disease but when it’s happening to you, trust me because I know personally that you don’t know how it feels and you should not tell anyone how they are supposed to handle it or go through it.

If as human beings, we can’t show respect and compassion then that is pretty freaking pathetic.

I had stage two invasive lobular breast cancer almost at stage three given size of tumor. It was 14 years ago in March 2011, that the tumor was formally diagnosed and discovered, and because the US back the was dragging their heels on newer mammography machines as far as approving them because mammogram with tomography, also known as 3D mammography or digital breast tomosynthesis (DBT) was NOT yet approved in US at that time. My cancer was discovered using a bilateral MRI.

I had felt something before that, but the regular mammogram then didn’t show the invasive lobular tumor. Neither did an ultrasound. I had Aetna then and they initially didn’t want to pay for an MRI. But my endocrinologist and gynecologist at the time was also a breast cancer survivor and basically said to me back then that I was going in for these tests and stuff because she wouldn’t forgive herself if something was missed. So somehow the billing wizards at Penn Medicine got Aetna to approve it and then to subsequently approve a needle biopsy.

And this was after having first thought I felt then imagined something in my left breast that previous October, but was told by the Securities and Exchange Commission that I couldn’t put off meeting with them as a the compliance officer as part of their then burgeoning war with my old boss by ONE DAY. And yes, that really did happen. The firm lawyers asked if we could put off my interview by one day and they refused so by the time I was able to go back and get that mammogram it was March in the then NEXT year.

So yes, my tumor would have possibly been discovered in 2010 had I been able to keep my appointment, so I was really lucky it was discovered confirmed and successfully excised in 2011 with clear margins.

Not everyone is so lucky. As a blogger I have had some of these types now saying garbage about Biden’s cancer who literally have written it’s a shame my breast cancer didn’t do me in back then so I really feel their nastiness again here.

I can’t believe this is the world we live in. It’s pathetic.

Then another person is a fairly well-known realtor who also had horrible things to say about Biden’s cancer diagnosis.

Compassion costs nothing. Kindness costs nothing.

Americans need to get their heads out of their asses.

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sometimes you read something and say “this.”

Posted on February 20, 2025 by carla
Screenshot of a painting
by Beth Gainer

A friend of mine writes on sub stack. She used to be an oncology nurse. She’s also an artist so she shared this post from a fellow artist and it so resonated with me.

💄

Spin

My 100th post discusses a media opportunity.

BETH L. GAINER

FEB 14, 2025

About a month ago, I was approached by someone with extensive media connections. We had a nice conversation about my developing art series: Breast Cancer, Female and Young.

Would I want a coveted chance at media exposure for the series?

For those new to my Substack publication, I am a breast cancer survivor and artist, whose aforementioned series depicts tasteful, nude female figures oil painted on canvas. These figures represent women who have been diagnosed with breast cancer on the younger side. The methodology for how I came to create this series can be found here.

The nudes will hopefully resonate with women who’ve been diagnosed and treated for breast cancer, as well as their loved ones. And I hope that Breast Cancer, Female and Young will educate people about how emotionally and physically devastating breast cancer is.

My contact envisioned “selling” the paintings to the press in the following way: the series would start with sadness, but my painting Unfinished Business (shown later in this essay) should exude joyful positivity as a finale to my series.

Breast cancer all tidied up. And someone trying to control how viewers perceive my art.

I found both rather distasteful.

My art series is deliberately non-linear, offering various depictions of the breast cancer experience in no particular order. I do not envision a beginning and an end because cancer is not tidy. For those like me who have survived cancer thus far, there may be a beginning, but often there is no end.

While we are grateful to be alive, we are never quite the same physically and emotionally after experiencing cancer. Collateral damage from treatment wreaks havoc on our bodies and spirits. And PTSD and other types of psychological damage do not give survivors the honeyed lives that some in the press enjoy showcasing.

💄

This post continues. I just shared an excerpt. This is a great blog as a matter of fact, and I’m going to read it going forward because it’s real.

On my own blog here over the past 14 years, I have had a similar conversation over the years ever since my own diagnosis and treatment. People want to say oh it’s so great you survived and this and that, and yes it is and it gives you a lot of new appreciation on things in life and it frees you in a lot of ways, but you are forever changed. When I read this, I thought I have to share this on my own breast cancer blog because it’s just so true and so real.

The writer and artist goes on to comment about people with metastatic breast cancer, etc. It’s a fabulous piece of writing IMHO and I’ve now subscribed.

It’s reminds me of when I say during breast cancer awareness month that breast cancer is neither pink nor fluffy.

There’s no other way around it, breast cancer is just a lot.

There is the whole thing of getting through the treatment and the meds and then there’s the whole self body image, which once you have had breast cancer is irrevocably changed. Some women get tattoos, some women get new breasts. I’ve done neither and now I’m 60, and when you look at me straight on, the half of breast I have left on the left side that I said 14 years ago looked like a donut peach is now a shrunken donut peach because it was irradiated. It actually shrinks a little more every year. If you look at that just to look at that fact, it’s fascinating, but still sometimes it gives you pause looking in the mirror.

Sometimes I look and I say to myself look at that now, and I used to have pretty nice breasts. But you’re a long time dead, and I’d rather be alive with crooked lopsided breasts. I also chose not to get a replacement breast, etc. because that plastic surgery just wasn’t for me, although I did post- skin cancer reconstructive surgery on the back of my head. As I discussed on this blog before I decided at the time I could deal with half a breast, but I couldn’t deal with a giant bald patch on the back of my head after skin cancer.

So artist Beth Gainer’s post and her particular painting opening her post resonates with me. I look at that painting and I see myself or a part of myself. Now I still have half a breast on the left, which is more than you see in the painting, but that’s how you feel. And I’m not saying that because it’s good or it’s bad because it’s neither, it just is.

I still remember standing in the mirror almost 14 years ago before my breast cancer surgery, wondering what it would look like and feel like. It helped me come to terms with what was happening to me and my body but living it is a different thing …and I’m not saying it’s bad or horrible every day because it’s not.

And people are so obnoxious in general with middle-aged women that you add breast cancer to it and it really is an interesting study in life. I’m a blogger I have been since forever. As I have written here before I have had experiences where people took photographs related to my breast cancer journey, and used them for their own selfish means.

One of the first times it happened it was this kook of a woman who posted the photo I had posted on this blog almost 14 years ago now, when I was just beginning the journey, I posted a photo of me in a hospital gown standing in a mirror. The photo was posted like a most wanted poster in a post office. Who is this woman she asked? Not because she wanted to meet me because I was a breast cancer survivor. It was because I had somehow outraged her with something I had written. Oh, and she did it during breast cancer awareness month. And she used that particular photo as an attempt to shame or embarrass me. Only I wasn’t shamed or embarrassed, I was outraged that you could take a photo like that out of context and try to use it for your own unrelated bullshit.

Then in the fall of 2024, I had another woman do a similar thing. Oh, and the added bonus of she decided to fat shame me. And to tell me how I was supposed to be. Did I mention this is one of those women who claims to empower and lift up other women? Yup.

Back then I wrote that breast cancer is a club no one asks to join, a sorority you didn’t choose, but it does teach you that you are stronger than you think. And facing your own mortality frees you from all sorts of things, and teaches you much.

I continued that here I am and you don’t have to like me or agree with me. But you don’t get to just come after me continually because I do not share your views.

Sometimes I have to think that having had breast cancer taught me to stand up for myself more. After all, you learn early on you have to be your own advocate, while navigating so much that is quite literally out of your control, including your body.

Recently, I had this happen again and it wasn’t even breast cancer awareness month. It’s just this individual who fashions themselves as a public figure and an influencer. Oh and on the side they play at being some sort of a mental health professional and how’s that for rich? Even better? Can it be said that their wife is in the business of caring for other women as a medical professional?

Anyway, this one decided to take a photo from a publication that someone I know puts out. The writer who took the photo is an accomplished writer and journalist. She was actually with me the day I rang the bell after finishing treatment.

So a few years ago when I hit the 10 year mark, I invited friends to join me on a special garden tour to quietly celebrate that moment. It was literally the day of my surgery at the 10 year mark. So I was at year 10 post breast cancer and just starting my 10th year of Tamoxifen.

As I have written so many times before Tamoxifen is not for sissies. It’s also one of those drugs where you basically can go through it with no side effects, or you experience a combination of most of the side effects.

I had the full tour of side effects. The insane joint pain, cataracts, general bloating, occasional inexplicable depression, and terrible weight gain. Would I do it all over again? Yes I would because I’m alive, but it was not a fun drug and it was hard on my body. It was in fact, exhausting. And I live with the after effects of the side effects.

On this June 1 in the 10th year of my surgery when the photo was taken, I was at my heaviest that I have ever been in my entire life. And literally everything about me was bloated even my head, and I have a big head to begin with.

So it wasn’t an ideal photo of myself, but it was me in that moment, and it was honest. I appreciated the photo because I was there to have the photo taken.

Since I began this journey with breast cancer, I have lost quite a few people to breast cancer and other cancers. That weird survivors guilt is one of the things you live with, but it’s a little nagging pain inside your heart.

So this particular photo taken by a woman who was also with me on the day I rang the bell and then wrote about the garden tour, was used without permission by this other person. There’s that of course, and people don’t understand that if you’re going to use or borrow someone’s photo, you should give it proper attribution at a minimum. (I will ask you to note the screenshot above from the artists post that inspired this piece of writing in me.)

In addition to using the photo, this person completely gaslit me. Literally made up a fantastical story as it were and who does that? Well they do when you disagree with them. This whole fantasy was posted in their closed Facebook group. I am not a part of it. I was however, sent the screenshots.

The other thing that was so amazing is how other people became part of what can only be described as a pack mentality. Sociologically and psychologically as messed as it was, it was fascinating. It really was adult on adult bullying and to read hundreds of comments about yourself from people that for the most part didn’t know you, had never met or had a conversation with you, to people that actually did know you and other others that you had helped was really amazing.

One of the people who had a lot to say and likes to tell tall tales to make every situation about them was actually another breast cancer survivor. I just marveled at that.

And of course, in all of these comments came the fat and appearance shaming. And then there was the one woman who actually contacted me to let me know on one hand what a terrible person I was, and on the other hand how she was contacting my friends to do a mental health intervention. (By the way, she never contacted anyone.)

All of that was again supposed to upset me, but the weird thing is after going through breast cancer, you look at people with their silly little nonsense like this and you simply marvel.

As women we have this whole idea of self that is almost societally put upon us. After you’ve had breast cancer, it becomes something and entirely different.

We are living with our bodies that in essence have turned against us. We go through treatment and we’re either called warriors or we’re pink gentle flowers. In fact we’re just women. And we are women who survived something that’s a pretty big deal. So when this other bullshit finds its way to your door, you look at that like another science project.

Another post from this artist’s sub stack that has resonated with me is excerpted below.

Anyway, that’s all I’ve got. I just figured I would share this because when you read someone else’s writing that makes you think, you share it so maybe other people will get it or in this case because she is also a breast cancer survivor, maybe my sharing what she writes will help someone else.

Ladies don’t let any of the bastards in this world get you down. Keep on keeping on. We all have good days. We all have bad days. The point is we’re still alive. Try to celebrate that fact every day. 

Thanks for stopping by.

💄

Finding My Voice

Being heard through my new art series

BETH L. GAINER

JAN 03, 2025

Some time ago, I wrote about how my vocal chords were adversely affected by more than 20 years of teaching. After I eventually retired from teaching, I went through physical therapy sessions for my voice, which helped. But I’ve come to accept that it is forever compromised.

I’ve been thinking about voicelessness lately. Time and time again, I’ve been silenced – either by having my voice ignored or receiving abuse for voicing my opinion. In either case, I paid a heavy price.

Then came a breast cancer diagnosis that placed me face to face with mortality, terror, and loss of control. I was scared out-of-my-mind shitless that I was going to die young. I luckily had doctors, nurses, and other medical professionals who nurtured me through radiation, chemotherapy, and whatever other nasty medical happenings were awaiting me.

These treatments might have saved my life, and for this I am always grateful.

But being a cancer patient made me feel like I was losing control over my autonomy and my voice.

Because I was.

Before the first chemotherapy session began, my oncology nurse gave me a calendar of when I’d be coming in for treatments and bloodwork, as well as when I’d be seeing my oncologist. When I tried to bargain for a date that would be more convenient for me, she made it clear that I had no choice. I went to radiation treatment at the same time each day, as dictated by my radiation oncologist.

I felt my control over my own life ebbing away.

Granted, these medical professionals were all motivated by the same goal: to save my life. To this day, I am awestruck by a kind miracle: medical staff became part of my family.

And another kind miracle: years after treatment and a preventive double mastectomy and reconstruction, I have found my voice through art. As many of my readers know, I am working on a new oil paint series titled Breast Cancer, Female and Young, which displays tasteful nudes that tell a story on coping with this disease. The collection lends voice to the breast cancer experience. And through this collection – and through art in general – I have found healing and comfort.

This week I’ve been working diligently on the newest addition to this collection, titled Unfinished Business. As always, I like viewers to interpret the artwork as they see fit.

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