shot day!

Today was the day! Shot 1! The COVID19 shot I have been given is by Moderna.

Finally.

I was a bit emotional getting it. It’s been a year living in a COVID19 world as an immunocompromised person.

It was a complete fluke I got an appointment, but since I am 1A , it was time to do this damn thing.

I feel like I can begin to breathe again.

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loss

I lost another life-long friend yesterday. To cancer. Not breast, but a nasty glioblastoma.

She was a very private person, so although I have known since August, 2019 she was sick, I have kept her peace. She asked me to do this, and I honored her request because it was her life and I respected that. This was a hard secret to keep, however.

I received a message at 9 a.m. January 27,2021 from her younger brother, who is also a friend:

📌 Got a call from Pam’s hospice nurse at 12:30 this AM. Went there with my brother and Pam passed with us at her side at 1:34AM. Along with sadness there was grace and peace. Thanks for your prayers.📌

She told me a couple of months after diagnosis and initial treatment or surgeries. You see, she lived in the same apartment building as my mother, a floor below. My mother adored her and she saw my mother and stepfather in the building this one day and they were understandably upset and she wanted me to hear it from her that glioblastoma had taken up residence in her body.

I told her it was an improvement because she never told me she had breast cancer until she was completely finish treatment and we used the same surgeon. Kind of a weird thing to laugh about but we did laugh about it. Because the one thing you know about her is she has always been fiercely independent and very strong.

The day she told me I told her I was loaning my mother to her and she laughed and said “only if I can give her back.”

Glioblastomas are horrible and relentless and she fought this bravely, all in, and with humor, even.

We connected fairly often during these past couple of years of her life when she was able and we shared many laughs over growing up and the adulthood we didn’t reckon for and the fact that I had given her logistical custody of my mother. We used to giggle and she loved my mother as much as my mother loved her.

But Pam was never one that wanted to sit still and have people feel sorry for her so I respected her privacy and quest for independence at this final stage in her life since I found out. She worked as long as she could and then like many others got shut off from life and people due to COVID-19 .

When she told me what was going on we kept making plans for her to come out and spend some time with us, but then it just never happened. It was either radiation or the effects of the chemo or the MRIs. And then COVID-19 happened and we couldn’t see each other.

She’s been very brave and very stoic and I just can’t believe we’re here. I can’t believe I have to talk about her in the past tense. We had some amazing conversations these last almost two years of her life I feel very lucky and blessed that I had the time.

Pam worked until she couldn’t, her career was very important to her.

I always knew she was on borrowed time because I asked my oncologist to be straight with me about her cancer. He shook his head and said she will be fine for a while, and then it will move fast, that it was very aggressive.

We went to junior high and high school together. I came to our prep school for high school before her and I remember when she decided she wanted to try to come to this school as well. I remember I was talking to her on the phone sitting on my mother’s bed in my parent’s bedroom looking up at the canopy on her Chippendale bed.

She came to our prep school and immediately fit in. She had a gift for making people comfortable and she was also so funny at times.

High school was many adventures and many trips to her parents house in Margate, NJ. There was even the time we were driving down a local road and she was driving her dad’s car and we were almost out of gas. I don’t even remember why we were out that night we had originally been hanging out in her family room. And as far as summer highlights she was the one who introduced me to the Anchorage in Somers Point. I still hate beer but I loved the Anchorage.

I will note like most teenage girls and young adults we did argue at times. I never liked it because I loved Pam. I will also note that she had one of my favorite bedrooms when we were growing up. It wasn’t kid-like and it was so feminine and pretty.

When we all went off to college, I don’t think I would’ve made it through freshman year without a lot of late night phone calls to Pam from Ohio where I was, to Geneva, New York where she was. And I remember going to visit her one weekend with another friend… and losing my turnpike ticket out the car window and having to pay the entire stretch of the highway.

Between college and middle-age, there was a stretch of time where we didn’t really see much of each other except for occasionally bumping into each other at a party or a reunion.

But then we reconnected, and stayed in touch and saw each other. She was at my wedding, and she was one of the people we managed to keep the surprise aspect with. So she walked in thinking it was a Christmas party, seeing me in a wedding dress and marched up to me and laughed, wagged a finger at me, and said “I knew it!”

This past summer when there were the riots in Philadelphia, I hadn’t had the news on so I didn’t know until the next morning what happened in Philadelphia that hellish night when I turned my cell phone on and Pam had texted me “is your mom OK?”.

That was May 30, 2020.

She then messaged me that the city was on fire and that the rioters and looters were in their neighborhood but they were OK and she was pretty scared. She’s the one that told me that 17th and Walnut in Philadelphia was basically burned to the ground. She remarked at the time that it started as a basic protest and then turned bad because other people appeared on the scene. She then admitted to me that she was scared although they were safe, and that this whole thing that was happening then in Philadelphia was insane.

What did Pam do next? She went on her walker with her health companion up to my mother’s apartment to make sure my mother and stepfather were ok. That was quintessential Pam.

Why am I telling you all of these things? Because I want everyone to know and remember her for the awesome woman she was. An outstanding professional career and personally one of the best people a lot of us have ever known. She always kept it real and I am grateful to have known her. I will always hold her in my heart, and I will miss her.

Pam loved to travel so I imagine her on a COVID-19 free trip to Paris or some exotic tropical paradise right now.

May her memory be a blessing and may we always hold her in our hearts. But this is a loss that is really hard for me.

We had breast cancer not that far apart from one and other. We had the same surgeon whom we both adored, Dahlia Sataloff at Penn. I have written about her over the years. I was still a patient but out a couple/few years when Pam had her surgery. And she literally didn’t tell me until like a year after she finished treatment and when she did it was in a blasé “oh by the way” manner. But she didn’t want fuss, she just wanted to git r’ done so to speak.

I have cried when no one is watching for a couple of days. I have also been as angry as hell. I wasn’t going to write about this, then decided I should. I need to process this and set it free.

Here comes all of the survivors’ guilt and mixed emotions. Not only have I lost someone who literally knew me before I had my period or even had breasts, we had the same surgeon, did our treatment, and yet a truly horrible cancer came and took her away.

And I am still here. I thank the good lord above and modern medicine, yet this screws with your head. The cancer coward in every survivor is happy to still be standing, yet a tiny voice sometimes wonders why her, why them, why not me?

And I have to push through these feelings and I know I do, but today I am still tired. 2020 was a brutal year for all of us with the COVID-19 of it all, and 2021 seems to be testing us as well.

This will be my second virtual funeral this month. Right at the New Year we said goodbye to another high school friend, Tiger. To kidney cancer. I feel like methuselah and I am 56.

God never gives us more than we can handle, this is very true. But I am over this empty hole inside me that feels like a giant chasm for a couple of days called grief and loss.

I have been going back to my breast cancer treatment days and have spent the past couple of days being completely and utterly selfish and trying to do things for myself. I ordered a couple of things for my garden. In the old days I might’ve gone to get my hair done or get a manicure but it’s COVID-19 and I haven’t had my shot yet.

I hope my friends are in heaven having a glass of wine together. They both knew each other and both loved Paris, so maybe they are in the heavenly Paris. That’s a nice visual in my mind’s eye so I am going to stick with that.

I apologize for being a Debbie Downer with this post, but for almost 10 years now I have kept it real here.

Don’t squander life. Live it and celebrate the everyday joys and moments.

Pax.

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cancer doesn’t stop for covid19 or the holidays

Today I made the drive down to Penn Medicine in Radnor. Yesterday was my last oncology appointment of 2020 and today I went in for my flu shot in the infusion suites. I have gotten it in the chemo lounge every year since I was diagnosed. Weird place to feel like a safe place for shots for me, but it just is.

First of all, I have to mention how beautiful the whole huge oncology area is. Chemo suites and infusion suites that are new and clean lined and bright even on a dismal dreary day like today.

After I checked in I walked over to my designated waiting area. I met a woman and her sister. They were waiting for a blood transfusion. You see, the woman has metastatic breast cancer and is in treatment but needed a boost from a transfusion. She was scared.

This lovely lady had come to Penn Medicine after a less than stellar experience at another hospital. It gave me pause. Breast cancer doesn’t stop for COVID19 or Christmas. No cancer does.

I smiled at the woman and told her it would be all right today. I felt that it would be. I really hope it was. She’s a lovely woman with the loveliest face. She was peaceful and hopeful and I was struck by how nerve wracking it has to be especially in 2020 to deal with treatment.

Cancer doesn’t stop for anything. So it made me think about all those people bitching about having to wear masks and socially distance because of COVID19. And to them I say get over yourselves. We’re all a long time dead. And if you lived with a compromised immune system YOU WOULD NEVER EVER COMPLAIN.

I live with a compromised immune system. So does my mother and my stepfather. So do many, many of my friends and family.

So to all of you selfish whiners out there I have a simple message: mask up and do your part and quit whining. 2020 has been hard on ALL of us. Emotionally, physically, philosophically, financially.

Recently I lost a growing up friend to a horrible renal cancer. And fortunately his family was able to see him a couple of weeks before he passed but his final months were not fun. Because of COVID19 a lot of his extensive in-patient treatment was 100% isolation from all friends and family. Not even his wife could see him. Because of COVID19 we could call and text him but none of his friends were able to see him at all.

I have another friend whose husband is battling a brain tumor. This year. Now. And had a stroke. No one can see him either. Except his wife, my friend. But because of COVID19, we can only offer support virtually and from afar.

So my perspective is very, very different. I am really sorry you can’t party like it’s 1999, but think of others. Please do your part and don’t be selfish.

#MaskUp and be safe.

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the cost of living…and dealing with healthcare costs

This morning I happened upon a report about women being charged and overcharged for mammograms. It was on CBS News this morning and it’s not a morning program I generally watch. But given my nine year journey with medical bills along with being a cancer survivor it resonated.

If it resonates with you, they are looking for women who have had problems getting mammograms covered and other kinds of charges to email Healthcosts@cbsnews.com

I wrote them to share my thoughts and say thank you. In part, what I said was:

I don’t normally watch CBS News in the morning, but it happened to be on, so I watched it this morning. I’ve watched with great interest you’re a piece about how expensive it is to get testing done that is breast related.

I am a nine year survivor of breast cancer. When I was initially diagnosed I had Aetna HMO. I had to fight for everything. I was exhausted after the surgery and into the treatment, but I had to be my own advocate or the bills would have been even more expensive.

I have an Independence Blue Cross PPO now. But even with good insurance all those tests I have to have as still an active cancer patient can be ridiculously expensive. For now, however, it seems my mammograms are covered. Other tests like MRIs have expensive co-pays.

This year I had a repeat dance twice with a second cancer which is skin cancer. Squamous cell and basal cell both requiring Mohs surgeries. One of the surgeries required a skin graft or I would’ve literally had a hole in my nose. The way insurance is so oddly structured along with hospitals payment systems, this year alone I have had over $5000 in overages that I have to pay off with a monthly payment plan.

I am grateful that both my hospital system and my insurance company are fairly easy to work with. But I know that’s the exception rather than the rule as compared to what a lot of women deal with.

I had knee surgery December 26 last year, as soon as 2020 hit the per visit for physical therapy went from $70 a visit to $100 a visit. I needed physical therapy twice a week. So I spent a lot of money on physical therapy, and that is one thing that I don’t like about my plan is physical therapy is expensive. I sucked it up and paid it because I needed the physical therapy.

When I was initially diagnosed with breast cancer it was pre-Affordable Care Act. I was self-pay on my health insurance because my employer at the time only offered himself health insurance not his employees.

Once the Affordable Care Act came in to play, I was one of the millions of people Aetna dumped in Pennsylvania. Fortunately for me the ACA meant I could get better insurance and I could go back to Independence Blue Cross Philadelphia or IBX as we know it around here. But then again, once Obamacare came into play that was pretty much all that was offered if you were self-pay in Pennsylvania.

Not to be political, but since Trump became president my healthcare costs have gone up. And every year I hold my breath and stress out because as someone who literally lives with pre-existing conditions, I am terrified of what will happen in the insurance industry.

In 2020 there have been some months as a self-employed person where I felt like I was working to pay my health insurance. But I know I am lucky because I was able to do it.

I think the problem is there is a big disparity between the hospital systems and the insurance companies. And where it gets broken down in a lot of cases is the hospitals don’t actually make that much money off of the insurance companies, but the insurance companies need to be more consistently regulated or regulated in the first place so that women can get the breast health test they need covered, and doctors get paid. Because this isn’t just 2020 where you have to fight to get stuff done in a lot of cases.

And a lot of people don’t have the luxury of having insurance companies and hospital systems that work with them. I am lucky that I can handle it even if I have to break things down into a payment plan. But it just sometimes is overwhelming to deal with medical costs and insurance.

Women do have to learn to be better advocates for themselves. They have to not be afraid to be pushy and when you’re going through cancer treatment that can be hard because you’re just tired.

When I used to have problems dealing with Aetna I found one of the most effective ways of dealing with Aetna was Twitter. They don’t like negativity on Twitter it seems.

It really shouldn’t be so punitive financially to try to get the health coverage and treatment you need as a woman.

Posted in breast cancer, health insurance | Tagged , , , | 1 Comment

the one good thing about a global pandemic is….

I found the silver lining in COVID19. I haven’t seen much of Pinktober which I hate.

This is the month I really hate because you even see pink pumpkins. Whoever thought a pink pumpkin looked good? It looks like someone spilled Pepto-Bismol on them.

I hope everyone is staying healthy and getting through this weird year of 2020 ok.

I have a few friends fighting different cancers, and my prayers and thoughts and positive hopes are always with them. Just like they are always with the rest of you out there. But I am not going to pretend that I ever like Pinktober because I hate it.

This is my ninth Pinktober as a survivor and it’s the calmest because this year we are thankfully not being inundated with pink plastic crap.

As is the case every October I urge all of you to find legitimate nonprofits that you like that don’t spend all their money on pink plastic crap and pink plastic marketing campaigns, but instead are focused on helping those with breast cancer.

Peace out and remember to vote. If you are a cancer patient, or cancer survivor you are a giant walking pre-existing condition. We cannot afford four more years of that big orange narcissist in the White House.

Have a great day!

#BreastCancerVotes

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skin cancer

It’s official. Again. My second cancer is skin cancer. Basal Cell and Squamous Cell.

Now granted the damage was done decades before breast cancer, but technically still my second cancer.

My skin cancer was discovered because after I had radiation treatment I was advised by my care team to start regular skin checks with a dermatologist going forward if I wasn’t seeing one already. And I hadn’t been because every time I had checked out a dermatologist in the past they seemed more focused on selling me on skin care products and cosmetic treatments for lack of a better description.

So at the time I asked one of my doctors and some of the nurses whom they would go to which is how I got my wonderful dermatologist. He removed some questionable and basal cell loaded moles but about three years ago other things popped up and I was referred to one of his colleagues, a Mohs specialist.

Mohs procedures are day surgeries under local anesthesia. They remove cancerous skin in layers until it’s gone. It can be a long process because each layer is examined in a lab process right there. When the skin cells test clean, you are finished and they stitch you up.

Two years ago I had a Mohs surgery for squamous cell. As of yesterday I have completed two more Mohs surgeries. One for Basal Cell and one for Squamous Cell. And one surgery involved a skin graft.

Not going to lie, the procedures hurt afterwards. Both were on my face. But if I hadn’t followed my care team’s recommendations after breast cancer surgery and treatment it could be much worse.

So the moral of this story is if you are a breast cancer patient who was told to get regular dermatologist skin checks, please do it.

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nine years.

That screenshot pretty much says it all. And yes a lumpectomy is a partial mastectomy.

I am nine years clear of breast cancer. One more year of Tamoxifen and the countdown starts in October for that.

I cried when I got the news. I know I am really lucky and yes, blessed.

Nine years.

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a breast cancer survivor in a covid19 world

I bet you didn’t know you could get COVID-19 face masks in breast cancer appropriate patterns, right? And no, nothing gets token donated to legitimate breast cancer charities.

Welcome to my breast cancer blog flowing stream of random consciousness. My head feels like a ping pong is going back and forth.

Yes I have been very quiet during this time, and this is the first time I’ve written in a long time on this blog. And if I’m honest with myself since the onset of coronavirus I’ve lived with a hum of anxiety. It’s always there. I don’t want it to be there I’m keeping myself safe and away and following the stay at home orders, even ordering all the groceries. But as a breast cancer survivor who is still technically a breast cancer patient, this thing scares the crap out of me.

Why?

Because every breast cancer patient and survivor lives an immunocompromised life. And I am the person who got the flu twice in a row the year I forgot to get a flu shot.

June 1st marks 9 years since the cancer was removed along with half of my left breast. My life is so much better post- breast cancer, I am very blessed. But this COVID-19 world in which we live is like a giant monkey wrench in the works of life.

We went into self quarantine two weeks ahead of stay at home orders because I attended a horticultural event where the second victim in my county was two weeks before the stay at home orders were issued in Pennsylvania . I never had contact with the person, did not get the virus but the rules are you are exposed or at something or where there was exposure, you report it and contact your doctors. And stay home.

This weird made for bad TV sci fi movie we are living is so surreal. A global pandemic and the last one was what? 1918? It is mind blowing.

A friend of mine posted the following on Facebook today:

March 13, 2020, schools closed in Pennsylvania.

Restaurants and bars closed the night of March 16.

Governor Wolf ordered people in the state to stay at home for thirty days. He then extended it until further notice. Delaware County may move from red to yellow on June 5th.

So we don’t forget…

Today is Sunday May 24, 2020.

– We are at 70 days of social isolation.

– Schools have been closed since mid March and are teaching remotely on-line. This will continue indefinitely. Keystones exams cancelled, AP and SAT exams postponed. Proms and graduations cancelled, postponed, or virtual. High school seniors are making their college choices based on virtual tours. Their orientations will be online, too.

– Employees who can work from home are doing so.

– Non-essential stores are closed since late March.

– There are lines / tapes inside the stores to keep people 6 feet apart.

– Long lines to get into grocery stores. Hard to get a grocery delivery.

– Amazon Prime delivery is no longer same day, next day, or 2 day.

– Bars and restaurants open only for home delivery & pick-up.

– Kentucky Derby has been postponed…1st time since 1945. Parades have been cancelled. Jazz and music festivals from coast to coast cancelled.

– All sports competitions have been cancelled. No baseball.

– All festivals and entertainment events have been banned.

– Weddings, family celebrations and birthdays have been cancelled. Funerals limited to 10 people.

-Zoom, which was a business application, is being widely used by everyone to gather groups of people virtually – socializing, funerals, weddings, workouts, religious activities are being scheduled on Zoom.

– Drive-by has a new meaning. People are doing drive-by parades to celebrate birthdays. People are doing drive-by baby showers by dropping gifts off at end of driveway.

– Young kids can’t understand why they can only see grandparents & other extended family and friends on a screen, or thru a window if someone visits in person.

– Hugs and kisses are not given. Elbows are.

-Airplanes are flying but majority of flights are canceled and only a handful of people per flight. JetBlue requires a mask.

– The churches are closed. Online mostly. Some drive-thru.

– We have to stay 6 feet apart.

– Primary voting will be done via mail-in votes.

– Shortage of masks and gloves in hospitals & other medical facilities. Shortage of ventilators.

– People are wearing masks. Grocery store and restaurants even require that you wear them to enter. People are making their own masks for sale or donation.

– Absolutely NO visitors allowed in hospitals, nursing homes, senior living, etc. If you go to the ER, you must enter alone, unless you’re the parent (or guardian) or caregiver.

– Toilet paper, hand sanitizer, antibacterial wipes and anything Lysol or Clorox is in short supply and limited per person…IF you can even find them.

– Flour and yeast are also nearly impossible to find. So are freezers.

– As of today, gas prices range from $1.69-2.29.

– Stores are closing early to disinfect everything. 24 hour stores are closing by 8 or 9pm.

– Store check outs, pharmacies, and even fast food drive thru windows have added plexiglass between employee and customer. Have to reach around or under to pay!

– Only 1 family member per cart in stores.

– You can’t find isopropyl alcohol easily…supply per person is limited.

– Banks only open using drive-thru or ATM transactions.

– Australia, USA and Europe have closed their borders, along with many others.

– Western Australia has been divided into 9 territories & an instant $1,500 fine issued for crossing the border without a valid reason. (Transport workers, Essential services etc)

– No one is travelling for leisure. Airports empty. Tourism is in crisis.

– 7:00pm is “Clappy Hour” in NYC to celebrate our healthcare heroes.

– We hung rainbows in our windows.

– Everyone is binge-watching Netflix and Amazon Prime.

– Remember the Concert from Home, the Disney Family Singalongs, the Some Good News prom and graduation, the Facebook Virtual Commencement…

Why do I post this?

Next year & then every year after, this status will appear in my Facebook memories feed. And it will be an annual reminder that life is precious & that nothing should be taken for granted. We are where we are with what we have. Let’s be grateful.

Thank you to ALL THE ESSENTIAL WORKERS – healthcare, veterinary offices, supermarket/deli/restaurant/coffee shop, delivery, mail, transit, sanitation, firefighters, police, bank, etc….it takes a village of essential workers to keep us going – be grateful they get up and do their job each day!

*copied and pasted

This is our world. Our friends and family memebers are stressed out. My husband is working 14 ++ hour days working from home. So are many others I know. Just as many, many more have lost their jobs or fear they will. Nothing like a global pandemic to rock the economy, huh? Yet do we really get relief from the astronomical health insurance premiums? Not so much.

And then there is the human contact, we miss our friends and family. And with a global pandemic we are seeing the best and worst in people wherever we live. I think there will be a special divine and social retribution for those who have been awful through this.

So here I am on the verge of 9 years since June 1, 2011 and I can’t even get a mammogram until mid June. And I am legit scared. Not so much of what the mammogram will say but bro actually have to go into a hospital setting. Same as today when I return to physical therapy (PT) post knee surgery. It was interrupted because of COVID-19.

And I am scared of that and I need the PT. My knee surgery was on my left leg, and left side is where sentinel node was removed in 2011.

And you know how after you’ve had breast cancer surgery they tell you where the sentinel node was taken out you never have blood drawn, you don’t get shots, you don’t have blood pressure cuffs, you fly with a sleeve? Basically you don’t do anything on the left side? I found out why. Since this knee surgery I have had slight lymphedema from my left knee down to part of my foot. It has lessened a great deal, but it still flares up.

So now as we begin to go back into the world, what does it look like really? Will it be easy to learn to re-navigate? Or fraught with disarray and chaos? Or will it be like this never happened?

I don’t have those answers.

Do you?

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self-serving oncologist or miracle worker?

dr onco

I don’t think I have EVER been negative about an oncologist. But this one I saw on TV recently in an NBC10 Philadelphia news segment just doesn’t sit right with me.

All this  it goes back to when I was newly diagnosed. I probably wrote about it somewhere on this blog.

I was just diagnosed and we were laying out my plan for surgery and treatment after and all the different tests and it was scary and overwhelming. It was terrifying if I am honest, but I just kept pushing through with the end game of being cancer free.

All of a sudden there were a couple of people who appeared out of nowhere that sold “cures”. It was super awkward in one instance because it was somebody I knew pretty well and when I turned their “cure” down I literally never heard from them again.  But did they really think I was going to forgo surgery and treatment and be treated with iodine to cure my cancer?

I forget what the other “cures” were but it’s like they came out of the woodwork at a time when my head was SO full.   If I had had a less strong personality some of these people probably would’ve taken advantage of me, and these kinds of people take advantage of people all the time. Not the people I encountered specifically, but there are people like this out there. So this report, right or wrong, sends up red flags for me personally.

Also I must note that two very important people on my care team at that time were also both survivors of breast cancer. And although they were physicians they did not heal themselves.  They also had their own treatment plans with their own doctors, and they did not impose their treatment plans on me because every cancer is DIFFERENT. And well, also wouldn’t that be ethically and morally wonky?

What they did do was share their knowledge with me of how certain things would go or say for example what the tattooing looked like if I had to have nipples removed as part of my surgery. They were knowledgeable so it made me like super comfortable because I knew if I had a question no matter how dumb, they were there for me.

All of my doctors did not (and still don’t have) have a problem with certain alternative things being added to my life post-surgery and post-treatment in the form of supplements and alternative therapies like bio energy as part of what I was doing but NOT in place of. The deal was I had to tell them about everything and it had to NOT interact with any of the drugs or radiation etc.

And I will note that they had me on zero supplements during radiation because they didn’t want things that fight free radicals fighting the radiation.

My care team has remained open to alternative therapies combined with traditional therapies, but they were very resolute that my cancer would be best served with traditional medicine.

So when a doctor comes along and wants to throw all of that out of the window it doesn’t sit right. And I listened to the interview and she was talking about what she was treated for and how she felt about her body. I. Me. My. I.Me. My. 

And while I respect that degree of self-focus in conjunction with her OWN cancer, and while I will respect different strokes for different folks, if she was TREATING me as my physician I would change physicians because I would wonder if she was foisting her personal beliefs on me as a patient at the risk of my life?

I will not she is NOT wrong about correlations between weight and cancer and I struggle with that thanks to tamoxifen.  But I am taking steps to deal with that.  I will not go straight vegan although some plants foods are super foods truly for breast cancer survivors and patients. I know women who have gone straight vegan who have ended up with other health problems.

I have my list of super foods my radiation oncologist Dr. Marisa Weiss (check out a recent interview here) teaches her patients about.  Because of her I got off commercial brand name antiperspirants and went for organic deodorants.  Now it took a while for my body to adjust, but it’s about reducing the chemicals. And I honestly don’t miss what I used to use. I have gone that route with lotions and shampoos and conditioners too when possible. Because of her I read labels and go more for organically grown food whenever possible. (Check out her non-profit Breastcancer.org )

I thought it was questionable of this television station to air this particular report. The doctor must have a publicist making the rounds? To me it was not much better than fake news. It was a fluffy piece, in my humble opinion, about a very selfish self-focused woman whom on camera gave off a vibe of having a serious screw loose. I felt like I was watching an infomercial and you would have a toll-free number at the end where you can sign up and pay her for whatever. As a survivor that really didn’t sit right with me.

I keep wanting to believe this doctor is different yet good,  but I keep getting snake oil saleswoman vibes. And no, I don’t have a problem with functional wellness. Or supplements as I take them. But I look at the good doctor’s website and then her interviews and wonder although she says as part of her mantra patients are heard, can they be heard above her talking about herself and her journey? We all have a journey, not trying to diminish hers but is it the most important one in the room when she’s the doctor and you are the patient?

As a woman in a breast cancer group I belong to said : “cancer is so multi factorial and complicated that while those may play a factor for some different types, it’s not a one size fits all, not even close.”

Another woman noted (and I agree 100%): “Ditching traditional treatment and replacing it with holistic? I believe it’s a death sentence. But combining traditional with holistic is fabulous and gives you a way more powerful tool for more effective treatment and a better quality of life as you go through treatment and recover.”

Yet another woman said something else that also so deeply resonated with me: “I wish people would understand that medicines come from natural sources – and have been shown to work to eradicate the cancer. Everyone I know that went the holistic route is dead, too. It makes me beyond sad.  Immunotherapy boosts the body’s natural healing. It is still a catalyst with something outside the body to make it happen. If the body, alone, was capable of healing itself from cancer, it would not have allowed it to happen to begin with.”

I can’t say oh my I wanted to take Tamoxifen for a decade and I wanted weeks of intense radiation treatment, but I knew I had to do it.  Tamoxifen has been an obnoxious journey as I have noted here, but I am NOT one of those women who is going to ditch traditional treatment with a good prognosis for a maybe trendy vibe. Will I be glad when Tamoxifen is over? Hell, yes. I have experienced a bunch of the side effects but I am here to complain about them.

I am a 9 year survivor soon. There are many worse off than me, and again every cancer is different. I am blessed and I know it.

Here are the links to media coverage on this doctor.  Start with the TV interview:

NBC10 Philadelphia January 31, 2020 Philly Oncologist Has Holistic Approach to Preventing Cancer

Philly Voice NOVEMBER 01, 2018 Einstein breast surgeon always has her head in the game

Main Line Today: Meet MLT’s December Cover Doc
Functional Medicine Specialist Dr. Jennifer Simmons Reveals Her “Magic Six” Keys to Health. BY MELISSA JACOBS

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and the beat goes on

It’s 2020. It’s one month tomorrow since I had knee surgery on my left knee. The healing is happening but it feels slow. Part of the problem is my left side is where sentinel node was removed when I had my breast cancer surgery 8 1/2 years ago.

In 2019 we discovered I did not escape lymphedema entirely and I was getting a touch in my left lower leg and foot. Not my right leg, just the left. Which means I think a lot of the post surgical swelling I am experiencing is in part due to my left side doesn’t like to be messed with.

But I am still on this planet to bitch about life’s minutia, so I will be fine!

Others are not so lucky. I am blessed I do not have to live with metastatic breast cancer. I know three women who are and they are each so different.

One woman who is an awesome human being is doing pretty darn well. She has her ups and downs and is brutally honest with how she feels. I respect that. No sugar coating, just real. She goes for her treatment and does her best to live her life.

The other two are very different.

One who is newer to this whole thing seems to post lots of warrior and other photos on her social media. She seems focused more on the stuff people are leaving at her door, which means poor thing is living in denial. By all reports her cancer is a nasty case and she has had infections and other stuff. I feel badly for her and I am glad her friends are lifting her up. But when the whole concept of cancer really hits her, I hope she can cope.

The last is in the end game stage of metastatic breast cancer. She is delaminating. She has a world of troubles. She is talking about dying now. She is posting photos of her body now on Facebook to show swelling. People must have gotten upset at her posting photos of her reconstructed breasts because she commented on the fact that what you see aren’t real breasts at this point. She has one child who seems estranged now. This woman lived for this child and personally I think the child needs to grow the hell up because this woman probably doesn’t have much time left.

I know of other women lately who have finished their treatment and rung their bells. I don’t even know them and it makes me fill up with tears when I hear of other women ringing the bell. It sounds silly, but it IS such a big deal. It’s a little thing that means the world.

Maybe that is why I like bells so much? I didn’t think about that until now. I had actually written about this elsewhere- how I like old bells and I have them in the garden and in my home and I love to hear them ring. Maybe when I ring my little bells I am ringing them for all of us?

Prayers up to those dealing with breast cancer.

That is all.

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