stressed out in oncology

Today is oncology appointment day. While waiting to see my oncologist a woman comes in. Doesn’t have an appointment but should have an appointment demanding to see her oncologist. Her oncologist is my oncologist.

This woman made a 25 minute scene at the front desk. She has succeeded in completely stressing out the entire waiting room, myself included.

And for what? Lady do you think you are the only cancer patient waiting to see your, OUR, oncologist?

We are all here waiting, and we all made appointments. You did not. The doctor told you when to come back, but he doesn’t schedule the appointments. We have to.

“I’m leaving!” The woman shouts at the top of her lungs.

Please lady, by all means leave. You have ruined the calm and zen of the waiting room which is a little thing every cancer patient wants before they are seen.

I will note in almost 9 years of seeing my oncologist they have never screwed up an appointment.

I feel for this woman because she is obviously so angry. That’s not helpful or healthy for cancer patients. We should all say a prayer for her, no sarcasm intended. She obviously needs to be lifted up.

So now we all continue to wait our turn. It’s never ideal but it is what it is.

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pay it forward

Let us begin with the never ending adventure of becoming middle-aged. Yours truly has popped the meniscus in her left knee.

But last night I braced up my leg iced it all day and hobbled on a cane to my friend’s Christmas market opening. It was all on one level and my friend was nice enough to have chairs strategically placed throughout her barn so I had places to get two to sit down and then I would stand up and start the process all over again.

Hobbling around I ran into someone who is a friend of a particular woman who I’m not friends with, but just underwent a double mastectomy. This woman was speaking to a bunch of people (including a couple if folks I was speaking with) while standing right next to me. It was a very detailed updateabout this woman and her cancer battle.

I am always amazed at how freely people speak about others at times around a bunch of strangers. And that’s fine, it’s not like this other woman who is not a friend of mine is hiding the fact that she has breast cancer. I just found it amusing when I asked her friend if she had gotten through her second operation yet, and she looked at me with like shock and surprise that I knew about it. And like I had two heads.

I mean come on! There is a Go Fund Me That talks about the first surgery not going well. “more surgery is required” was one of the direct quotes.

And then there was the whole thing about lymph node involvement and reading between the lines that she didn’t have clear margins and it’s metastatic.

I’m not psychic that usually means more surgeries. Especially if the margins aren’t clear. And how do I know that? Because I remember the conversation I had with my oncologist and surgeon before my surgery. And I was told in no uncertain terms that if they did not get clear margins there was another surgery at least.

I feel very badly for this woman and I think about her because she’s got two teenage kids and I know how much she loves her life. She might not love me and I definitely do not love her and we’re not friends but I still deeply appreciate what she’s going through, which is why I had made a small donation to her Go Fund Me in the first place.

Sadly, this woman is also in a hospital system I wouldn’t have a hangnail in. And what her friend was saying to everyone last night is she also has to have a full hysterectomy. And I told her friend I had gone that route as well but fortunately for me, I went through my breast cancer treatment before the hysterectomy. I had ample recovery time, which this woman won’t have.

Her friend last night also said that this woman is facing a very daunting and rigorous schedule of both chemotherapy and radiation in addition to additional surgeries.

I said to the woman I’m not going to pretend I am friendly with her but you might want to have her look at a specific nonprofit and I gave her the name. It’s a local nonprofit that deals with helping out patients with metastatic breast cancer and breast cancer and I think they’re wonderful. And they are right out here where we live.

I was trying to be nice and this woman turns and looks at me and says that this other woman knows everyone essentially and knows how fundraising works and all about fundraising and nonprofits so she was sure she had heard of that nonprofit.

OK signed me slack-jawed, cancer know it all. How about just saying thank you for your kindness?

It was really kind of stunning. I was grateful for people to tell me about resources when I was going through the surgery and treatment. I wasn’t telling her to go buy the crazy quack iodine cure that someone tried to sell me over 8 years ago, I was just sharing the name of a nonprofit that really helps women locally.

Now maybe I shouldn’t have said anything but this conversation was not going on in a secret room in hushed tones. It was going on at an event. so if you’re going to discuss your friend in public so that everyone can hear, people are going to speak to you. Duh.

To this woman I will say the following: you don’t know what resources your friend may or may not have heard of. And she is the one going through cancer so if someone gives you the name of a nonprofit that might be helpful, especially when you are in a crisis financially as well, pass it along, even if it comes from someone you both perceive as public enemy number one. Or even check non-profit out yourself before you pass it along but don’t discount it out of hand because of the person who is giving you the information.

It’s crazy that I am seeing so many women facing cancer again. I feel like every day I hear of someone else.

And every day I count my blessings as an eight year survivor. I pay it forward because that’s the right thing to do. That’s the Christian thing to do.

So pay it forward people, even in the face of cancer know it alls.

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no, wouldn’t wish breast cancer on anyone

 

Image result for breast cancer women art

This is probably going to be a strange and meandering post.  First of all, please, please, please do NOT send me any breast cancer awareness month anything. I think Pinktober is bullsheit and I keep saying it…and yet…I get things sent to me. Every damn day during October.

Really? Come on now, anyone who knows me even only through this blog knows I. Hate. Pinktober.

Now for betwixt and between.

Recently I donated to a Go Fund Me of someone I know, who is not a friend. She faces a double mastectomy tomorrow I am told.

I was conflicted about donating at first.  Because this is someone who at one time I thought would be a friend and was a new friend for a while. Then she betrayed that.  I remember that at the time it hurt quite a bit.  I was new to where I currently live and I thought when we met that she was nice and bubbly. Can’t say I wasn’t warned by other friends, because I was.  But I wanted to believe the best in her. But that isn’t how it played out and I walked away. Without regret.

The last time I spoke to her was a few years ago was when she called my cell phone rather randomly to see if she had seen me driving a particular car as she passed me on the main road near my own road.  I told her yes, and that was the end of the conversation.

I have heard dribs and drabs about her since then.  I did not really pay any of it much mind. Until recently. A friend asked me if I knew that she had been diagnosed with breast cancer. Obviously, as she is out of my orbit, I did not.

I then saw the Go Fund Me. Would she do the same for me if I had one? Probably not.  But that is not the point is it? I gave a small donation because I wouldn’t wish breast cancer on anyone. And she has children.  They need their mom. It’s pretty much that simple.

I like to think that paying it forward is just the right way to be.

Older-photos-021A double mastectomy is nothing to joke about. That is serious surgery. She is not the only one going through it, either. Someone else she knows is, and I have a couple of friends dealing with this now. I said years ago when I was first diagnosed that you do not realize how many are struck with this disease, even in your own world, until you are diagnosed.

I lost my friend Mary this past summer.  That was a tough one. She was the most positive person I have ever known who lived with (and died from) metastatic breast cancer.

Another friend, a newer friend, is living with metastatic breast cancer and was married to someone I knew for about 30 years.  I say was because he also passed away this summer.  He was her support system. Not all of it, but come on, much like my sweet man is to me, he was a huge part of it.

I still remember when he called me the day she got her diagnosis. He was terrified and calm on the phone all at the same time.  Because when everyone finds out that a loved one has this diagnosis, it’s like ping pong balls careening off the inside of your head.

I worry about his widow, my friend, but this woman however has amazing  grace. Pure and simple. I am lucky to know her.

And these are all of the people I think about and wondered what they would do if they were in my position.  And I would like to think they would pay it forward, which is why I am. People are hosting a fundraiser for this other woman from the Go Fund Me  in November. I am not going to attend because that I just can’t do.  I also do not think it would be appropriate. She will be a few short weeks out of surgery and should be surrounded by those who truly care for her.  Gawkers and curiosity seekers need not apply.

Truly, I hope her surgery goes well. I hope her recovery goes well. But for the Grace of God go any of us and well, I already have danced with the devil known as breast cancer. I am lucky and I am blessed.

I read a piece from Time Magazine from 2016 again today. It was about the history of breast cancer activism essentially. Very profound.  I will leave you with this excerpt to think about:

Today, activists are pivoting their focus from awareness and early detection towards saving the lives of patients who have progressed to advanced stage IV disease, or metastatic breast cancer. And breast cancer activism has evolved from individual patients voicing their own experiences, to the formation of community support groups for cancer survivors, to political organizing for a cure. It has grown from a small grassroots movement to a widespread network of professional advocacy. Critics point out that, along the way, the struggle against breast cancer has been exploited by companies co-opting the pink ribbon to advertise their own products or bolster their image. But before all of that, it was a movement about giving women the courage to speak openly about their bodies, and the agency to decide their preferred course of treatment when faced with a serious illness.

#ThinkBeforeYouPink  #PayItForward

Related image

Paint for Pink — Where Graffiti Meets Education and Health for Breast Cancer Awareness — in Newark, NJ 2016 

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can you make an actual difference this #pinktober ?

Philadelphia Inquirer: Homeless and cancer-ridden, woman fights to stay alive in Chester County

by Alfred Lubrano, Updated: October 7, 2019

The breast cancer has spread, colonizing Maureen Wall’s body with soulless precision.

It’s bred havoc and poverty in the lives of Wall, 60, and her husband, Don, 59.

The pair are homeless. Currently, she sleeps in a bed at Chester County Hospital, while Don sleeps in the chair next to her. Medicaid covers hospital costs. They survive on $350 a month in food stamps, and whatever cash and gas money for Don’s father’s old car, a 2005 Nissan Altima, that friends, Chester County churches, and charitable strangers can give.

Now part of a little-known population of nomadic homeless people in Chester County….While Maureen has suffered through three years of chemotherapy, radiation, and other treatments, Don — who once earned $53,000 a year selling parts for BMWs — has been laid off twice, and now devotes his time to caring for his wife and looking for a part-time job.

The couple have applied for Supplemental Security Income (SSI) for Maureen, but have been denied by the federal government three times…..Doctors have said Maureen might live a year or less, as cancer has ravaged one breast and lodged in the other. The disease has further metastasized to her lungs and her liver.

“This is a sad case, a sad case,” said Jan Leaf, executive director of the Lord’s Pantry of Downingtown food bank,

I read this yesterday and it resonated with me. Because this could happen to anyone. These are people who have had a devastating run of bad luck. I don’t know them but as a cancer survivor who has at times thought she would lose her mind over medical bills since getting breast cancer eight years ago it falls into the category of: I. Just. Can’t. Even.

This story has in truth resonated with many in the area where I live. I encourage all of you to read this article in its entirety.

It’s freaking #breastcancerawarenessmonth so I am paying it forward for #Pinktober and writing about this in the hopes that somebody will see this that can really step in and help these people get housing and comfort for this couple.

Some ladies locally have started a go fund me:

Husband and wife battling homelessness and cancer

I read Maureen’s story in the Philadelphia Inquirer. I was brought to tears. I picked up the phone, called the hospital and they connected me to Maureen. While talking to her I cried. We cried. I can’t imagine how they are feeling. I watched what Cancer did to my father when I was a child and I can’t think what that would have been like had he been homeless. This shouldn’t be happening. They need love and a village. 

Their story has touched the lives of many people and the word is still spreading that Maureen and Don need all of our help to fight Maureen’s cancer and break the cycle of homelessness. ~ Adrienne B

I know people are very leery of fundraising efforts like this because so many people are afraid they’re not legitimate. If you have a question you can call Chester County Hospital. You can call the reporter from the Philadelphia Inquirer (Alfred Lubrano. alubrano@inquirer.com 215-854-4969.)

Personally I gave a targeted donation to the Lord’s Pantry in Downingtown, PA before the Go Fund Me was established.

This #Pinktober, consider forgoing the purchase of faux pink crap. Helping these people would be a real testament of paying it forward and doing something positive in the face of breast cancer.

Thanks.

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the “pinktober” lament: breast cancer isn’t pink and fluffy

#PinkPower ? #PinkTober ? #IfightTODAY ?

Damn. It’s October 1st.

Freaking #BreastCancerAwarenessMonth is here again in all it’s glorious hues of Pepto Bismol pinkness.

I hate it. I hate the month of October now. Every time you turn on the TV or walk into a grocery store or go anywhere it’s all about pink. I don’t even like pink as a color much anymore.

I’m one of the lucky ones as I am an eight year survivor of breast cancer. But some days it has been a fight. And recently it has been a fight again as I have developed slight lymphedema in my left foot eight years into Tamoxifen and post treatment and surgery.

I also have balance issues which I think can be attributed as well to living post breast cancer and specifically wondering when people will talk about Tamoxifen toxicity?

I also am growing cataracts directly attributable to Tamoxifen. At least when they finally ripen I can have them removed.

And the hot flashes over the past few months? They have been brutal.

Please understand I am not deliberately trying to be negative but I’m just trying to prove that the reality of living with breast cancer or living with having had breast cancer isn’t fairies and rainbows and pink flowers and pink balloons and pink T-shirts and pink plastic bracelets it’s a very real thing.

I do agree, however, with Hoda Kotb from The Today Show that breast cancer can be a new beginning. I have said it since the beginning that having breast cancer freed me to be the person I actually want to be. It freed me to a better life. And that’s for a very simple reason: when you face your own mortality you realize there’s a lot more to life than you have been experiencing. You cease to be afraid to take chances and expand your mind, life, horizons.

But every time PinkTober comes around it triggers something in me. All the constant talk of breast cancer just makes me anxious. And when you see the commercialization of PinkTober it makes me honestly upset as well.

Today is one of those days that I don’t feel pink pretty or light and fluffy for having survived breast cancer for eight years. I feel a little tired, unattractive and unlovely. I look in the mirror and I see uneven breasts that get more pronounced as time goes by because The left breast which had a good chunk of it removed and then was completely irradiated is dead tissue for the most part and it continues to shrink.

Yet I know in my heart of hearts that reconstructive surgery wasn’t for me. I think there are more than enough problems with fake boobs.

I have friends who live with stage four metastatic breast cancer. I don’t think they see it as pink and fluffy either. A woman I know who isn’t even a friend has just been diagnosed with breast cancer and is facing a double mastectomy. She has two children and a family.

This is not something I would literally wish on my worst enemy or even people I don’t care for.

But I think the pink of it all during the month of October isn’t empowering I find it diminishing. And I think it’s because of all the commercialization of PinkTober.

I am all for lifting women up and supporting women dealing with this disease. You get your diagnosis and you are a lifetime member of a sorority you didn’t sign up for. It’s a lot. It can be overwhelming it can make you feel powerless. But I don’t think a pink T-shirt is going to make me take my power back on days when I’m feeling a little down. And I’m someone who is an eight year survivor saying that!

I am all for people being supportive of those of us who are newly diagnosed, going through treatment, about to have surgery, and who are survivors.

But I’m not a goddamn pink powder puff girl. I’m a grown ass woman and so are all of you out there dealing with this disease.

During the month of PinkTober, do something nice for yourself. Pay it forward with legitimate charities and volunteer your time or make a donation to them.

But save your money on things like pink cupcakes, pink T-shirts, pink plastic bracelets, pink hats, and all the pink products that the manufacturers want you to buy in the grocery store during October. If you want to give back do it in a way that is more meaningful and where your money will actually mean something. PinkTober products are a marketing scam for corporate America as much as anything else.

Charities I like are still:

BreastCancer.org

Living Beyond Breast Cancer

Unite for Her

So #IfightTODAY I ask you people to look beyond the PINK. Survivors are all different we are not a homogenous glob of pinkness.

Am I a survivor? Oh hell yes. And I made my choice to be positive throughout my treatment. It has made a huge difference in my life. And I am not being negative now and I don’t want people to think that — I am just being a realist and there are so many of us that dread #PinkTober.

Eight years later I still think we can lift breast cancer patients up without coating them in PINK.

That is all.

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the club no woman wishes on anyone.

Image result for pink breast cancer

Breast Cancer is a club you wish on no woman.  Just heard of someone else who said they have received such a diagnosis.

Every time I hear of someone else having it I am instantly transported back 8 years. Every. Damn. Time.

And I am one of the lucky ones.

And being lucky means sometimes feeling guilty. It doesn’t have to make sense, it just is.

It’s September.  Soon it will be October. October means hideous Pinktober will return.  And once again those of us who have had breast cancer or are currently being treated will remind everyone and practically shout from the rooftops that there is nothing freaking pink and fluffy about breast cancer.

Nothing.

But I will tell y’all again that my making the decision to remain as positive as possible saved my life I feel.

When I was diagnosed I discovered at the time I lived in a cancer cluster.  I did not imagine it. But now, 8 years later I can’t find the data on the Internet.  What I have stumbled across are the lovely statistics that made the Commonwealth of Pennsylvania #8 in cancer deaths nationwide in 2016….don’t know what 2019 is like but hey we live in a world where agencies like the Environmental Protection Agency have kind of been gutted.

But we can’t stop living.  Our best defense is being informed.  If you think something is wrong, don’t ignore it. I learned that lesson the hard way.

When I first found my lump, I was busy at work.  I did have a mammogram scheduled but something came up at work and I was unable to keep that appointment. I didn’t get that mammogram until months later.  I should have insisted that I needed to keep my original mammogram date.  I really, really got lucky.

And then there is that annoying emotional component of breast cancer. Some of us are alone when we get our diagnosis, some of us are parents and step parents to young children, and some of us are just embarking on the rest of our lives and quite young. You get a diagnosis and your head spins the first time. You go through surgery, treatment, post-treatment and your head spins more on occasion. Every mammogram and blood test and gynecologist visit the rest of your life will always give you pause, even if you are positive. Because as breast cancer survivors we always live with the secret fear of “will it come back?” We live with medical histories that are now stamped “cancer”.

The ability to write about my breast cancer all these years has been a saving grace. It was and is a comfort. Because I have had the ability to do this, write about my journey with breast cancer, it has been an extremely productive coping mechanism for me. Being able to get it out and write it down kept me moving forward. And when I have a down day, I can still look back to see how far I have come.

I am proud of myself for being able to share this journey on a blog and so are the people who love me.

As a woman who has had breast cancer I can’t read about the disease every day. I can’t even talk about it every day. Still. 8 years later.  I can’t go to funerals and won’t unless I have to. That is where my coping wheels still come off.

I will tell you people are definitely weird when it comes to dishing cancer. Some people are super secret about it, some people are living it out loud. I was, and continue to be open about it. I do that partially out of respect for the kind and caring women I know who were open about the disease when I received my diagnosis. They wanted me to feel less alone and helped demystify the terror that comes with a diagnosis. It is the worst kind of scary unknown. Because of these women who shared with me I was able to get through and remain positive. And I have told you before, some days that positive thing was a very hard goal to keep.

Many of my fellow breast cancer survivors have gone on to experience additional cancers.  I don’t want to term them secondary, because that is not necessarily the case. My additional cancers have come in the for of skin cancers. Basel cell and squamous cell. Again, I count myself lucky.  I am still around to kvetch.

Recently a friend of mine died.  Not of breast cancer.  Just went to sleep one night and that was it.  His wife is a current breast cancer patient. Today is her birthday.  I send her all the love in the world. She lost her rock.  And he was an amazing man.  Such a big heart. And she has an equally big heart.

But for the grace of God go I.

So that is it for me. Just checking in.

 

 

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but for the grace of god go any of us

This is a community member. This could be anyone, and it’s legitimate. This is NOT someone who is faking anything and with all she has faced so bravely I don’t know how she does it.

She’s a real woman and a mom and she can’t catch a break.

Brain tumors, other potential cancer-like growths, and Mitochondrial Disease. (Mitochondrial Disease examples are MS, Parkinsons, and Lou Gehrigs Disease (ALS).)

But for the Grace of God Go any of us. If you can help, every little bit helps. Even just sharing this helps.

Thank you

From her Go Fund Me months ago:

*updated*  Beth has always worked two jobs – however – in early December 2018 one of the attorneys at the lawfirm she worked at told her “if you’re having seizures I can’t have you here”… two weeks later she was let go – the Friday before Christmas.  She was not told why.  She was told only that she had 5 minutes to gather her things and leave and and never come back.   She rarely ever took a sick day even with the diagnosis of a brain tumor and lesion, which causes her to have severe vertigo and balance issues, seizures, headaches and fatigue…. 

In 2012 she even donated one of her kidneys to someone who needed it!  To hear her say it, “it was the right thing to do.  And, I had an extra one anyway.”   She’s always one to make people laugh…..She has been battling migraines since age six and was diagnosed with epilepsy a few years ago.  Now she is facing a recent diagnosis of a CORTICAL DYSPLASIA LESION and a LOW GRADE GLIOMA (brain tumor).  Which was actually discovered in 2014 on an MRI taken when she had a stroke.  However it was not disclosed to her until  June 2018 when she began having serious issues.  Someone dropped the ball big time!

Help Beth McNulty Battle Mitochondrial Disease

From her Go Fund Me this August:

AUGUST UPDATE – Beth’s is now being treated by a Neurologist at Einstein for Mitochondrial Disease. Mitochondrial Disease examples are MS, Parkinsons, and Lou Gehrigs Disease (ALS). She has an illness you cannot see and if she had been treated correctly years ago may have been able to avoid this stage. THERE IS NO CURE. THERE IS NO MAGIC MEDICATION. Mito is controlled through diet and nutrition and overall management. The hardest part for her and for us is the effects of the cognitive decline. She can’t do many of the things she used to even just around the house and its devastating to see and devastating to her.

At this point she has been using a cane to walk since November. She has dementia like symptoms more often but she still has more of a “good day” than not so that is what we hang onto. The right side of her body is weak and her hand tremors which is also starting to happen in her right leg. She cannot hold a cup, and her right hand remains closed and is painful to open so we bought a small toy football for her to hold to keep it open.

She is incredibly effected by sound – too many “noise sources” are very confusing for her and can be overwhelming and even physically painful – she says it makes her ears burn – which also triggers seizures (before a seizure she usually touches her ears and face and that’s how I know she’s about to have an issue). She also gets very confused at these tmes and often has trouble finding her words or remember the conversation she is in. I think this may be part of why she stays in alot.

Her body cannot produce the energy it needs as fast as it is being used. Some days she cannot even move to reach for something because her body just wont cooperate and she is exhausted but when she CAN do something even if it is for a short time she does.

She cannot eat many solid foods at this point because she cannot digest them well (Gastroparesis) and chewing physically makes her Jaw tired.

We focus on key nutrients like Magnesium, Vitamin D, Iodine and B to keep her energy levels up. Her medications are on a schedule – Thyroid, Seizure, Migraine, and the foods we make sure she has every day are Avocado, Mango, Banana, Chicken and FlaxSeed.

In June she had and EEG and ENG, in July she had another w/wo contrast so her Nuero can compare with all the other scans dating back to 2014 when they discovered the tumor and lesion (but forgot to tell her about) but ALSO discover her Gastroparesis, and Thyroid Disease – 3 effected Organ systems = Mitochondrial Disease) – but 5 years later here we are…

The ENG was a very painful test of electrical conduction done in two parts – the first was topical electrode shocking her muscles and the second was long needles that shocked her muscles once they were inserted – I had to leave the room – it was like watching her be tortured for two hours.

This disease is robbing her and us. It’s painful for her to have and painful for us to watch her go through knowing nothing can be done. Alot of people seem to be google doctors which is very frustrating – we know what we are dealing with because WE are dealing with it although we do appreciate the well intended suggestions of trying this or that or maybe its “just…” we finally have a have a very educated team of medical professionals that are experts in their field.

Beth thought she had unemployment funds until December and in May was tricked into signing a release not to sue her former employer for an ADA claim in exchange for them not to contest it. and her last payment was in June. She has applied for disability but in the meantime we could really use some healp.

Help spread the word!

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