it’s about the lymphedema

Yep. Lymphedema.

That’s my leg in the photo at the bottom of this post. And I tinted everything pink, I don’t actually have bad circulation 🤣 But lymphedema isn’t pretty, and tinting it pink just amused me. Probably because everyone makes everything breast cancer related pink.

Anyway, not all breast cancer patients get lymphedema, some of us like myself, escaped it for years.

When they take out your sentinel node during surgery, they always tell you don’t do anything on that side. No blood pressure cuffs, IVs for future surgeries, bloodwork, etc. I avoided everything on my left side where the sentinel node came out until I had knee surgery on my left knee. Then the swelling started in earnest.

I had bits of swelling in my left arm years ago, right after surgery. But it did not last. Thank goodness. If I fly I have to fly with a sleeve for my arm. Every breast cancer survivor should get fit for a sleeve for the arm where the lymph node came out to fly with.

Lymphedema is obnoxious and I only have it to a lesser degree. I have friends who have this quite badly. They get wraps and other treatment. Mine is almost like massage. It’s manual lymph drainage. It’s fascinating because the movements of the therapist are light and slight, but the results are unbelievable. The fluid just goes away and the swelling dissipates.

With me the lymphedema occurs primarily from my toes to the top of my calf. Sometimes it creeps past my left knee. And it’s funny, I’ve had meniscus surgeries on both knees now and the left knee took longer to heal and longer for the swelling to go down and now I know why. It was lymphedema.

With lymphedema when it’s going on my left leg doesn’t have the same mobility or range of motion as my right leg. It also feels more and more like lead the more it swells. Sometimes the left leg feels warmer than the right. It’s weird.

My doctors at Penn Medicine have been supportive about my trying to get this under control now so it doesn’t get worse. The way I understand it is I will always have this. My physical therapist is awesome. I have a bunch of exercises I do each time and along with the massage/lymph node drainage. And my leg is measured every time.

It used to be kind of difficult to get therapy for lymphedema. As a matter of fact I didn’t know I could have it until it showed up in my left leg over the past couple of years. If you are suffering from lymphedema, talk to your care team. The physical therapy for it is helping. I totally don’t love that breast cancer gave me yet another gift. But I am grateful that I have access to the tools to help make it manageable.

Be well.

What my leg looks like when it’s starting to swell.
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christmas thoughts: year ten draws to a close

Ten long but pretty darn good post breast cancer years is drawing to a close. It somehow seems inconceivable for 10 years have gone by so quickly, and then I have been so lucky. And I have been.

Friday was my last oncology appointment for 2021. And I spent a wee bit of time in the chemo/infusion lounge waiting for my flu shot.

While I was in the chemo lounge waiting for my flu shot there was first of all the lady across the way from me who was talking on her cell phone about some man and all the child support he owed, and how long he was going to have to work.

Next there was this little tiny old lady on a walker who came cruising by and honed in on the snack cart for chemo patients at the edge of my little “room”. She opened her purse and I swear she emptied most of the snacks in the cart into her purse. And then she couldn’t get her mask up because her one hand was full of treats still, so I said to her “Honey put your treats down and then you can pull your mask up” and she turns she looks at me and smiles a big smile and says “Thank you that’s a great idea.”

It was also Christmas sweater day. Even my oncologist had one on! But as I was leaving I saw one of my favorite people who has worked at Penn Radnor oncology as long as I can remember. We stopped and we caught up for a minute and it was so nice. And that’s the thing the weird thing about this disease: you meet people, you make friends, you get through it.

These people have also been part of my story and my journey this past decade. Along with the people I have encountered every visit. For the most part the people have been positive. Some haven’t been. Fortunately they fade into the background and melt away. But that’s the thing about this whole new normal. Life weaves in and out in between and through all of these appointments that have become a big part of my routine.

I ran into someone I know recently who is more recently into this journey. She went through surgery and treatment in the thick of COVID19. I think that must have been hard…and lonely. My friends went with me to radiation. COVID19 took that away from cancer patients. But the good news is she was given her treatment by the radiation oncologist who was also mine, Dr. Marisa Weiss.

So this woman and I talked. And talked. I get where she is, and the feeling of sheer madness I remember experiencing because of all of the questions and sheer emotions. She asked me if I was ever afraid of a reoccurrence. I have written about it that. Sometimes I still have these little thoughts that wrinkle across my brain. Especially now because I have been off Tamoxifen since September, but I was on it for 10 years. And then you just stop taking it. So then it’s a little like walking a tightrope without a net, and it is hard to realize/accept you don’t need that particular net anymore.

And some days I wonder what the future holds. I don’t have a crystal ball. BUT I have to NOT forget my paternal grandmother who was the oldest survivor of breast cancer I have ever known. She had breast cancer at a time when there was no treatment. There was surgery, yes, but that was it. And she lived into her 90s, and it was NOT breast cancer that wrote the final chapter of her life.

I also have a life long dear friend who lives with another metastatic cancer. She’s doing her immunotherapy infusions like a trooper. She got a literal Christmas miracle this week when she received the news that her current treatment was definitively working. The nodules that would not move have shrunk so much they have disappeared!

And we have survived COVID19 thus far. Cancer and treatment and meds no matter what stage of disease/treatment/life after means we are instantly immunocompromised . That news combined with a virus like that is no joke. So those who do not wish to get a shot can spare me their reasoning because they put everyone else at risk. Please get a shot and if someone asks you to wear a mask, it’s not such a big deal .

Readers, we have no guarantees in life with or without breast cancer. We can only do our best and believe.

Have a magical Christmas wherever you are.

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thinking of you

Thinking of you.

You know who you are.

The surgery should be over by now.

I respect your boundaries and your quiet way of being. But I am still thinking of you.

I know you read my blogs, so I just wanted you to know I was out here, sending light and positivity.


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at the end of breast cancer awareness month, a woman continues to target breast cancer survivor (me)

Recently I wrote about the woman whom seems a little obsessed with me, and not in a healthy way. We are now at the end of #PinkTober or #BreastCancerAwarenessMonth and the same woman still is a bit obsessed with me. She posted the item on the left in the collage yesterday. I didn’t personally see it because I blocked her on social media so I just don’t have to see her stuff.

The funniest thing is about what this woman posted is the photo she posted of the woman smoking above isn’t me. I’m a breast cancer survivor, I don’t smoke, after 10 years of tamoxifen and hot flashes I don’t even ever have more than one or two glasses of wine every couple of months. So I’m guessing that’s like some blonde joke on brunettes that we all look alike. The other thing about that photo in particular is I have not been to a public meeting since COVID hit. Truthfully I’ve been very few places since COVID hit, even after having received my third a.k.a. “booster” shot. I don’t go any place that is a large crowd or that I am not sure of the status of the people in attendance. That particular photo was taken at one of these crazy recent school board meetings near where I live in Southeastern Pennsylvania. And they are a mob scene because of all the ant-vaxxer anti-maskers.

I live a permanently immunocompromised life, we all do if we have had or are going through treatment or are newly diagnosed with breast cancer. So for me personally? I support the parents in the school districts who are trying to do the best by their kids. And that means COVID shots and masks. And I support the teachers and educators in all of the school districts who also want the same. I do not respect or support the people fighting them on this, and the woman who keeps posting things about me, is one of those people.

She has made herself a public figure by making herself a public spectacle. She literally flips out at meetings (it has been caught on video). She has been quoted and has given quote to the media. She posts bizarre thing on Facebook publicly. She is lead in litigation against a local school district thus far denied by courts based on what has been published.

Why am I posting this on my breast cancer blog? Because it’s still #PinkTober (which I honestly dislike as mentioned before) and she still targeting me and I am a 10 year breast cancer survivor and I have a right, to my opinion regarding masks and vaccines. Why? Because I live a permanently immunocompromised life. And people like this put anyone who is immunocompromise at risk. It’s not fiction, it’s science. Which of course is why I also don’t get why these people don’t want children protected?

And by going through my archives here I was able to date the photo she used of me in the hospital gown. And you know when that was? When I was getting the needle biopsy and other testing before my breast cancer surgery. She posted it like an FBI most wanted poster. Someone told me yesterday it’s still up. Why she chose that photo is known only to her. But as I said recently, could it be a purely bitchy female move as to embarrass me by posting a photo of a me in a hospital gown? Is it to bully me? Come after me? I still don’t really know her motivation, and I honestly don’t care. But it made me reflect on the past decade, a little more in depth then on my 10th breastcancerversary or the recent date of stopping Tamoxifen.

So in the spirit of that reflection I’m going to post another collage. It might offend some people because although certain parts are covered up and tinted to be more artistic, they are of my breast of which there is 10 years later less than half left. The last photo is a recent one. My hand has aged 10 years and so has the breast it is very shrunken, and sometimes yes it bothers me, but I know I don’t want fake breasts.

Today, me and my very shrunken left breast are stepping out into the light. I have survived 10 years post breast cancer as of June 1. Or 10 years just recently because it’s the anniversary of finishing my radiation. Or 10 years as of September having finished my Tamoxifen.

So if this woman wants to run around posting photos of me, and ranting and raving that’s on her. If she wants people in her community to start crossing the street when they see her coming, whom am I to interfere?

This is definitely one of the odder things about my journey, but because photos of me are being posted from 10 years ago in a hospital gown as I began my breast cancer journey I consider this part of the journey

The final collage is the very personal various stages of going through this. Just after surgery, well into radiation when your skin feels and looks like raw meat (the photos with what looks like a rash – my skin was raw and burned towards the end ), and 10 years later when everything has shrunken down and you’re 10 years older, the breast is 10 years older, your hand is 10 years older. It’s a very humbling experience.

This disease can be hard on your body and your psyche. But I am not ashamed of my journey with this. So that is my take away from the continued attention of this woman. None of us are perfect, especially after coming through a disease like this. Don’t be ashamed, wear your scars with pride.

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Ten years later, I still #hate #pinktober because there is nothing pink or fluffy about breast cancer. And I don’t like all of the companies which profit from this month because very little of their pink profits goes to charity.

#PinkPower is pure bullsheit. If you want to wear pink because you like the color, wear pink. But don’t wear it for Pinktober.

If you’ve ever had breast cancer, we live with this every day even if we have been cancer clean for years. Pinking it up doesn’t make it better, it just sort of makes it like a cartoon and I find that offensive still 10 years later.

I am all for positivity when dealing with this disease because it’s important, but making everything various shades of Pepto-Bismol pink for a month is not helpful.


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#tbt and thoughts seeing an old photo from my breast cancer journey

Dear Readers: the backstory is that photo was posted on Facebook yesterday like an FBI Wanted Poster in the post office. If you have followed this blog, you know I haven’t even here posted tons of photos of myself. I just haven’t. This photo above is from some part of 2011 and the beginning of my journey with breast cancer. Either before my surgery, or before I started radiation. It may have even appeared on this blog.

The person who posted it undoubtedly is unhappy with my opinions on their craziness about COVID-19 and wearing masks, and masks on kids in our schools. They are literally very public with their feelings speaking at public meetings, etc. Otherwise quite frankly, I wouldn’t know they existed on this planet.

I don’t know why they chose this photo in particular. Could it be a purely bitchy female move as to embarrass me by posting a photo of a me in a hospital gown? Is it to bully me? Come after me? I don’t really know her motivation, and I honestly don’t care. But it made me reflect on the past decade, a little more in depth then on my 10th breastcancerversary or the recent date of stopping Tamoxifen.

I remember the first year dealing with breast cancer very vividly. You had a good days and you had bad days. You tried not to let people see the bad days because sometimes they either couldn’t handle it or they wanted to fix everything for you, and you really have to come through it yourself even if you need support.

Every woman’s breast cancer journey is intensely personal because as I have said over the past decade, breast cancer is a disease with a very public face that is at the same time this odd duality of also being a very personal/private journey. The face in the photo above was not the face of confidence, that was a face of uncertainty because it is all so new the first year.

And that’s O.K. You work your breast cancer 12-step program and take things day by day. You celebrate the little and large victories, your are honest when a day is just crappy.

I am proud of the last decade and grateful to be alive. So this woman? She doesn’t get to take that from me or my first amendment rights. To follow in italics is the post from my regular blog so you have the context.

Thanks for being here with me and here is what I wrote:

📝Hi Alicia! I am guessing you don’t like yesterday’s post? All based on public information and I am actually allowed to express my opinions by virtue of the same First Amendment that allows you to spew hatred at Tredyffrin Easttown School Board meeting, correct?

So the photo you posted? Well it is 10 yrs old and I am fairly certain it was either before I had breast cancer surgery, or after I had surgery and was getting ready or just starting radiation treatment. Are you happy now that you posted the photo? Like I am wanted for some crime against humanity? Lots of people know me, dear. Some of those people actually alerted me to your public wanted poster on your Facebook profile.

You might not like what I have had to say about you or your anti-masker, anti-vaxxer amigos, but I am entitled to my opinions like anyone else. You put yourself out there in public forums where you have no expectation of privacy, you don’t really do so well with your privacy settings on social media, and you chose to try a Go Fund Me for your lawsuit for an injunction against Tredyffrin Easttown School District/School Board that was covered by the media. YOU madam, raised your own profile. No one else. I am not breaking new ground here. You have created your own political theater have you not?

That photo illustrates why I live immunocompromised for life… because I had breast cancer and received treatment and just finished up 10 years of breast cancer medication.

So I have zero respect for someone like you who raises hell in school board meetings with your nonsense. Sure you have your first amendment right to your opinions, but no law says I or anyone else has to agree with you and the first amendment is not subjective is it? Or do you think it is?

411: we have been living with a global pandemic. Not the common cold. Masks won’t hurt people for a little while. No one likes to wear them, but if we do our part because that is how this will all get under control and eventually life will return to normal. Of course the flip side is will life return to normal? Ask any cancer survivor and we will tell you we have had to get used to a new normal. Maybe you do too?

Bless your heart, thanks for the photo memory, and the very real and valid reasons people like me think people like you are just wrong.📝

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milestones: the last dose of tamoxifen

It was just a little note in my calendar. But it’s a very big event. The note says “stop taking Tamoxifen after today.”

Ten years ago I started taking Tamoxifen. Prior to this, I took very little medicine. Mostly allergy medicine and ibuprofen or Tylenol. Sometimes antibiotics, and well back in the day, birth control pills. Taking a drug every day for 10 years hasn’t been fun, and there have been times over the course of a decade I seriously wished I didn’t have to take it. But I didn’t want to be one of those people that just suddenly took themselves off a breast cancer drug they were prescribed. And there have been times over the past decade when I have seen women comment in breast cancer chats that they’ve done just that.

I can honestly say that over the course of the past 10 years I was more scared to NOT be on tamoxifen, than to be taking it.

So here we are.

I have survived a decade on this drug and I am cancer free at present. Tamoxifen did it’s job and I’m not going to rehash all the issues I’ve experienced over a decade because this is the last day. The very last day.

I did it! I got through it!

How do I feel about this? I’m not sure is my short answer. I am so glad I am here 10 years later to tell you I can stop taking Tamoxifen, but part of me is also a little nervous. It’s kind of like going forward walking the tight rope without a net isn’t it? But if the drug has done it’s job, and buy all testing and examinations, it has done it’s job. So from my doctors’ lips to God’s ears, I will be fine.

I remember when my oncologist and I had the discussion about stopping Tamoxifen at the 10 year mark, it took me a while to comprehend that I didn’t taper off, I just stopped taking the meds.

I think I deserve a merit badge or at least a nice piece of jewelry for surviving 10 years of the stuff.

Well I am signing off for now. I just wanted to take a moment to also recognize this milestone in my breast cancer journey.

Be well dear readers and thanks for being here all of these years.

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tales of the breast cancer mean girl and other encounters

I have been sitting on this a couple of days and I still feel the same, so it’s time to talk about a breast cancer mean girl.

I must preface this tale with what led up to it.

I used to participate more in one in a particular breast cancer group but a lot of these groups have devolved for lack of a better description. As another friend and survivor said to me people seem to want virtual hugs and phony prayers more than they wanted actual helpful info. And some of what I see posted I just can’t deal with for different reasons, sometimes just gobsmacked.

I had two experiences recently which gave me pause. The first was a woman who is a survivor, proceeding on her journey post surgery who is also single. Peppered me via private message on social media with questions of sex life after breast cancer and other things that were very personal to talk about with a stranger and time consuming. But I took the time because people took the time for me. But then I see this woman crowdsourcing in a group after I gave her lots of information and places to seek information – including her own care team which is something I don’t understand about how women will crowdsource about things as important as breast cancer and treatment and they DON’T go to their care team, the medical professionals caring for them! People wonder why their doctors aren’t helping them? What is it they don’t understand that they have to actually talk to their doctors about what’s going on especially in their heads through this process?

I also think that these groups even if they are offering support have to be careful they are not crossing the line and giving pseudo-medical advice because a lot of them do. I just feel like every case of breast cancer is truly individualistic, so is the treatment. People can share their experiences, but they should correctly encourage people to go back to their own doctors and nurses and even therapists.

So the next thing that occurred is a woman who rolled up with this bold statement: that she had to get a complete hysterectomy two weeks after starting Tamoxifen. Add a minimum I found that to be an irresponsible statement, going past that wondering how it’s even medically possible? Two weeks into a drug you take for years and your body is barely starting to process it. And yes, there are things that happen like people have allergic reactions to the drug, or in my case I had an allergic reaction to some of the binders and fillers and what not in one form of the generic. Although the drug itself is the same what holds it together can vary from manufacturer to manufacturer.

So anyway, I did tell this woman to get a grip and go back to her care team and if she was uncomfortable about being told she had to have a complete hysterectomy, or to find a second medical opinion. However I also said that two weeks into a use of a drug you stay on for years isn’t going to cause you to have to have a complete hysterectomy, there must be other things going on. The only reason I know that is because I did have to have a complete hysterectomy two years after my breast cancer surgery and two years into Tamoxifen. And with me there totally was a whole medical history. From the time I was a teenager I was growing little uterine tumors, ovarian cysts, fibroids, etc. that’s why I knew before my 21st birthday I would probably never be able to bear my own children. By that time I had so much scarring and everything else.

Two years after breast cancer treatment, surgery, and two years into Tamoxifen technically I was in menopause. But my body being my body started growing these things again. And that’s why I had to have a complete hysterectomy. Because what I was growing wasn’t just staying like a cyst or benign tumor or a fibroid, it was growing differently and septating, so had I not done that I probably would have popped ovarian or uterine cancer without a doubt —- not just my opinion, but medical opinion. They did pathology on everything they removed for me, and it was all cancer free at that point thank the good Lord. But I do not regret at all the decision I came to with the help of my care team to do that. And I am not less of a woman because I got spayed.

Although I talked about having to get a hysterectomy at that time I didn’t go crowdsourcing or off on a tangent of essentially facts not in evidence. And I listened to people at the time who told me not to go off on tangents or anything else, but to stay calm and centered because that was the best way to get through it. People also said to me yeah you’re going to have the occasional bad day but take it day by day. I was also told to make sure my care team knew what I was thinking and feeling even if I felt it was silly.

Well for basically telling this woman that I thought she needed more help and wasn’t processing things well, I was pounced on by other women. It wasn’t warm and fuzzy enough, apparently. And that was fine as those women are entitled to their opinions , but what happened next wasn’t fine.

What happened next is a woman that I avoid in the real world because she’s a mean and crass and snarly tough bitch, has become a part of this group. I don’t know when, I hadn’t noticed her before. But up she popped in a full-on attack at me. The reason she did that was simple: she doesn’t like me in the real world. And I have blocked her everywhere I can on social media, and I go out of my way to just avoid her because she has attacked me before. She is one of those women that no matter what the topic is she knows better than everyone else.

I said to this woman, that although nobody else knew the backstory I know full well the only reason she was commenting and coming after me is because she doesn’t like me. And I said that isn’t really acceptable anywhere, let alone a breast cancer group. And then I blocked her again, because apparently somewhere along the line something must’ve been undone and she was no longer blocked to me. Literally this woman will go on full attack mode every time she encounters me. She is one of those whom I feel dislikes people who aren’t like her. She’s not someone I would ever want to be like and would never trust as a friend, so she is the kind of person I avoid.

For this exchange, I did go to the group administrator, which I’ve rarely done before in all the years I’ve been part of it. But I wanted to let her know that this person was attacking me not necessarily for my opinion in a breast cancer group, but because she didn’t like me out there in the real world, and that to be honest she had done this before. The reaction I got in return was kind of a blame the victim scenario. I should’ve said what I said to the woman with the Tamoxifen issues in a kinder, gentler manner. Sorry not sorry, that doesn’t address how this woman attacked me. So I thanked her for her time, apologized for bothering her, and I’ve been thinking about this for a couple of days now.

Yesterday I ran into someone who told me a tale of this same woman who attacked me verbally in a breast cancer group. Not to get into the nitty-gritty but apparently I’m not imagining things this is the way that person behaves and they were pretty mean to somebody else who is a breast cancer survivor.

Of course the other thing I found amusing or the tales of this person going to retreats and what not to find their inner Zen. Well I think her inner Zen is lost and they should get a refund. I don’t do menopausal mean girls in general, and certainly not in breast cancer groups.

What bothers me the most however, is this woman violated a decade old safe space for me. Sadly, although I might stay, I won’t be feeling like it’s a safe space for me to share in. It puts me back to my initial issues with support groups when I began this journey. There will always be these women who feel they have to dominate, and it’s not a contest. And I get there should be an accent on positive versus negative because this is not necessarily an uncomplicated journey, but I also think we have to be honest and acknowledge it’s not all fuzzy bunnies and hugs. And I really resent women who are bullies going along under the guise of fake caring.

It could be I have reached the end of the road with support groups like this, but I don’t know. Only time will tell. Life is a journey and we can only do our best and speak our truth.

Peace out.

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meeting new survivors

Today it was time to visit the pleasant vampires and have blood work done. The results actually came back but because I don’t know what I’m looking at so I am waiting until somebody calls me because I me and I know I start to freak out. Yes I know it’s completely unrealistic and silly but blood work makes me antsy.

I also met a really awesome lady today. She is just beginning her survivor journey and was waiting for bloodwork like me. These waiting rooms are lonely places these days because you have to come in by yourself, and if you’re not attached to an oncologist there’s certain locations at Penn Medicine where you can’t just walk in to get blood drawn anymore.

It’s always so crazy to meet somebody who’s in a place that you remember. With the questions like will the hot flashes get better. And after you’ve dealt with hot flashes for a few years you could pass on the tips of things that are triggers like caffeine, sugar, alcohol, stressful situations.

And because no one ever told me after radiation I should keep an eye on my thyroid I also suggest that anyone else coming out of treatment.

I really like this woman and I referred her to the only breast cancer group I’ve consistently been a part of over the course of 10 years.

One thing we talked about is something I remember pretty well. When you’re first finished with treatment you are relieved. It’s like a giant weight off your shoulders. But I swear sometimes it’s the people around you who are more excited you are finished with treatment than the actual patient. And it’s not because we aren’t happy that we finished this part of the journey, I think it’s simply because we have been in this uphill race to git r’ done for lack of a better description. I remember back then that it was equal parts relief that I was finally finished, mixed with my gosh I’m finally finished and I know that doesn’t sound like it makes sense but in a weird way it does…your head has to catch up with everything. After all, one thing that breast cancer can do is crowd your head with just so much stuff.

Anyway it did me good to meet this woman and I hope I was helpful to her. She was so nice.

OK people I am going to keep on keeping on with my day.

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ten years of clear mammograms

So it’s official. 10 complete years of clear mammograms.

I can’t even begin to explain the relief I feel. I mean I know I reached my 10 year anniversary a couple of weeks ago, but I hadn’t had the mammogram yet.

I didn’t exactly have a good nights sleep last night. It doesn’t matter how many years go by, once you get the diagnosis you are antsy before your next mammogram.

I spent most of the day doing nothing except puttering around in the garden because I couldn’t concentrate. My husband was so sweet and drove me. He has been with me every step of the way.

“You will be fine” he said as he dropped me off. And our post Covid apocalyptic world they still don’t have visitors in the waiting room, so he waited in the car.

What was weird about the waiting room as there are still no magazines or newspapers or anything like the good old days before Covid. When I got signed in I got taken back to the dressing room where we have to put our clothes in those day surgery plastic clothing bags, because thanks to Covid you can’t use the little lockers.

I had the mammogram and so different from a decade ago because when I started this journey the 3-D tomography mammogram wasn’t available to us in the US. It wasn’t approved yet. So back when I started this process I had to get a regular mammogram and then go get a bilateral breast MRI.

Penn Medicine has terrific mammogram technicians. Today’s mammogram was once again over at Chester County Hospital’s Fern Hill.

Today was a diagnostic for my 10 year. And the diagnosis was all clear.

And I cried. Yep. Not a lot. Just a little.

I am one of the lucky ones.

Then I went home and put on deodorant.

Next up? Being finished with Tamoxifen in a few months.

What a long strange trip it’s been.

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