DAMN IT DAWN! WE ONLY WANT YOU TO BE FUNNY!

The following is a Facebook post written by my amazing friend Dawn Lynn Goo. Dawn is a talented comedian and very well known for her brilliant wit and humor. Just like anyone else, Dawn has real feelings and emotions and sometimes between the jokes and the funny posts she drops some serious reality that needs to be heard. This is absolutely one of those times. This is Dawn’s original post. I am also including the link to her post so readers can see the overwhelming outpouring of love and appreciation that was shown to Dawn because of this post. Boy, was it appreciated. Her post was shared 36 times and was shared beyond that. I encourage you to leave a comment on this blog post with your thoughts. I’m sure that Dawn would appreciate what you think as well. Without further adieu…..

“You can’t be sick, you’re fat. You don’t look like your dying. You still have hair. Oh come on, you’ve been dying for years. It can’t be that bad, it’s not like you’re dying tomorrow. At least you have a few years. Stop complaining. Others have it worse. At least you’ve lived your life.”

This is the crap crowding my (Facebook) news feed. Watching my friends hear well meaning people say insensitive things because they lack the knowledge of what they go through.

So, I ask you, are there different degrees of terminal diagnosis? Is one person who manages to live four years into a diagnosis less allowed to be afraid than someone who doesn’t get diagnosed before their cancer has metastasized to their bones, brain, liver, kidneys or another organ?

Are my friends supposed to be less afraid because they managed to have positive results with certain cocktails of drugs, while others have stopped responding?

I wonder if you truly know what it’s like to suddenly feel as if your friends or family have become numb to your plight, and the fears you face on a daily basis.

Has society really become so desensitized that we view cancer patients that have fought for years as lucky, and they should stop voicing their fears? Is the woman of 30 with young children at home, who has stage four metastatic breast cancer more a tragedy then the 50, or even 70 year old woman with the same diagnosis? And are we truly compassionate if we are distinguishing them that way?

I can not speak for the hundreds of my friends on my two FB pages that are dying, because though we all share a similar diagnosis of terminal cancer, each of our bodies, and our fights are individual. Some are at the beginning of their journeys, some are at the end. All of them fighters, each of them warriors, but I can talk of the one thing they each have in common.

I’m not one to sugar coat things, so I’ll just say it. Death. Imagine for a moment, sitting in your oncologists office, and being told that there is no cure for your cancer. That means that despite what you do, how hard you fight, eventually you will either die from the cancer spreading to your organs, or you will die from the treatments, because your body can’t stand the assault of the medications on your system, or like some, your immune system becomes so weak, that an infection will end your life.

You begin the journey of playing Russian roulette, doctors and specialists preparing cocktails of poisons that you pray kill cancer cells before they kill you. You go from having two doctors, to having a slew of specialists, because suddenly your brain, kidneys, liver, or bones come into play. You develop an extensive vocabulary of medical terms, and learn first hand how damaging side effects can be. One day you look down at your medicine cabinet and realize you have more medications for the adverse reactions of the chemo drugs then you do of anything else.

And you get tired. You get tired of feeling as if you have to always be strong for those around you. You get frustrated with people who just can’t understand because they simply don’t get it. If you complain, you feel like you’re letting everyone down. If you, God forbid, entertain the idea of stopping treatment, some will say you’re giving up. Damned if you do, damned if you don’t. And if you’re me, you sometimes feel alone and isolated.

No matter how strong a person is, for me at least, the thought of dying is terrifying. You can try to put it out of your mind, but it’s always there, lurking behind the laughter, popping out late at night when the world is quiet. Some of my cancer friends, like me, are single. Some have children, some don’t. Some have spouses, some have significant others. What they all have in common is that they will die from cancer.

It breaks my heart to see one of my friends feeling defeated because someone has told them they should feel or act a certain way. It makes me angry to see someone post that they think my friends shouldn’t post photos of their surgery scars, or show the ugly side of cancer. Ugly side? Since when does cancer have a pretty side? You must be thinking of those pink ribbons again that have sadly, done very little to help find a cure.

Cancer isn’t pretty. It’s vile, mean, and ugly. It eats away at your body, zaps your strength, and often kills your dignity. It can make you angry, and it steals control over your life.

I understand the importance of not letting it keep you from enjoying your blessings, but you are misguided if you think that cancer isn’t always on our minds. We fear each new scan, because being told a medication is no longer working is heartbreaking. Being told your cancer has spread, is terrifying.

Ask yourself this. What if you went to the bathroom, and when you wiped yourself, you bled because your skin is paper thin and prone to tear? What if your mouth bled and you quivered in pain each morning because putting your dentures in over sores in your mouth that were a result of chemo? What if your skin on your hands was splitting open, and some nights you were in so much pain that there was no comfortable position to get into? What if you everyday you looked at your child and knew you will not see them graduate, or ever hold your future grandchildren? What if you knew the taste of poison or metal in your mouth every time they hooked up your port to run the drugs in, or if you ever had to watch a nurse put on two pair of gloves, and protect herself from the very poisons they were about to infuse into your body, as you stare at the hazardous waste receptacle that everything those drugs came in contact with go into, and suddenly realized that basically they are dumping poisons into your body, well then maybe you’d understand what my friends go through.

Have you ever had a Charlie horse in your face, your inner thighs, between your shoulder blades? I have. Have you ever thrown up blood? I have. Have you ever been so tired and in so much pain that you eye your bottle of pain meds and think, “it would be so easy?” I have.

Nothing pretty or romantic about it. None of us choose to be warriors. If we had a say, we’d certainly not ask to be inspirational as opposed to being cancer free. But we were dealt a hand, and we accept it. We don’t expect you to get it, we only ask that you respect our individual way of handling it. Some of my friends speak out and become advocates for research, some are more quiet. Some share their day to day struggles, and post openly about their pain. All fight in their own way.

It’s wrong to criticize any of my friends for being human. If you don’t agree with what they post, just unfollow, and their posts are not on your news feed, but don’t comment insensitive things just because you think they should behave a certain way.

I have friends on here with terminal cancer, I have friends who have won their battles. I have friends who are planning their end of life care. All warriors, all beautiful people.

I emphasize all the time, be kind. Watch your words, because words can lift a person up, or they can be a weapon with the power to break a person down. Try to understand, that for a lot of us, our pages are a community of support that we simply don’t have anywhere else. You don’t have to agree with what we post, but I think that decency and respect should be a given.

You can’t walk in our shoes, we get that, but please don’t think you have the right to decide our paths. Please stop reporting photos of mastectomy scars as inappropriate, so people’s accounts get suspended, because all you’re doing is keeping a warrior from having support from the people they need.

I have always been honest and open on my page. Some find it redundant, most don’t read my scattered thoughts, that’s ok. It’s cathartic just writing them, just as its cathartic for my friends posting what they do. You can learn a lot about strength from these people.

We are imperfect creatures…yet we’re capable of the most perfect intentions…so be kind. Exercise compassion, even when you don’t understand what the person is going through. Me, I use laughter as a means to make my friends forget for a moment, the thing that rules their lives. I don’t judge a persons choices, or their right to share their thoughts. If I see something I don’t agree with, I simply scroll down. It’s easy.

Isn’t there enough sorrow and heartbreak in the world, that we needn’t add to it by taking offense at something someone posted on line? Is it really necessary to hurt someone just because they think differently or have different beliefs?

I had tears watching one of my friends be attacked because she wanted the right to end her life before being put in hospice. I cried watching one of my friends repeatedly have her account shut down because she posted her photos of her mastectomy scars. And it seems every week I’m in tears because another person has lost their battle, and their account goes silent. We have enough in our lives to deal with, and often, we just want to be heard, to be validated, to know that our struggles mean something.

Now I’m rambling, so I’ll end this rant of mine, and leave you with one last thought, taken from another one of my posts….

Each of us have mountains to climb. The height or difficulty of my mountain, does not lesson the height or difficulty of someone else’s. It’s important that we all remember that, and respect that each of us has struggles, and my pain is no more acute to me, than someone else’s is to them. So I try to practice kindness, understanding, and empathy. There are no bad side effects from that. I really believe, if we were all quicker to listen, slower to speak, and just practiced being kind to one another, we’d all be a little better off.

Dawn Lynn Goo

Dawn’s Original Facebook Post

posted with permission

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As The Stomach Turns

So, I’ve been dealing with nausea, weight-loss, lack of appetite and change in bowel habits (diarrhea) since maybe March. No one has been able to figure it out. No one wants to take ownership of it. Not my Oncologist and not my GP. We’ve just been monitoring it.

Nothing stands out in my labs, my Oncologist adjusted the dose of my Ibrance. Palliative Care gave me a stronger anti-nausea medication and now I have Reglan. But nothing changes.

Except that now I have fun things happening that required me to make an appointment with my OBGYN. I just assumed that all the estrogen suppressing meds have finally taken its toll. Not so much.

When I caught my Dr up on the shit show (pun intended) of the last 6 months she took it all in. She asked me questions. Then she did her exam. Boy I had NOT missed that. Ladies you know what I mean. I was a bit confused when she told me she was going to do an internal exam but why not? Let’s go for the full treatment. When she went to the left side of my abdomen and pressed I let out a sound I didn’t know I could make and I’m quite sure broke windows. My Dr looked at me with a very grim face. She said (and I’m quoting her), “I’m very concerned about you. That area is your colon. Given your medical history you need a complete GI work up as soon as possible. This has gone on far too long”

Well, shit. I’m torn between feeling satisfaction that SOMEONE finally heard me and on the other hand being totally freaked out that there is something really very wrong and has been wrong for a long time.
I’m very anxious to get to Sloan Kettering now. I’m curious to get Dr Modi’s opinion and input on this whole GI thing. I know she can’t do much for me that day but she can order the tests and I can have them done when I get back home. I am hoping that if there is extra blood work she can request that she does so I can get a peek into what may be going on. One thing about Sloan, the labs turn the blood work around with lightning speed.

Unfortunately, I have been on the Google and I know I shouldn’t have but I need to know as much as I can so there are absolutely no surprises. I’d rather know all the worst case scenarios now and have it be something minor than bank on it being minor and being smacked in the head with something horrible.

The count down starts…..

The Numbers are Not in My Favor

At my last update there was concern over my rising tumor marker: CA 27.29. I had my labs done on Thursday and the decision was made to schedule a PET/CT for August 2nd. The rising numbers coupled with my continued weight loss (I’m averaging about 10lbs a month) and my over all feeling like crud has my team feeling there is enough concern to warrant the scan. 

I’ve been thinking all morning. I’m working in a visit to Sloan Kettering on August 5th to see my Primary Oncologist while Adam and I tour NYU. I’m going to see if the PET can be done earlier that same morning before my Dr appointment. I haven’t been scanned there in a while and due to the mixed reading I recently had that involved the lymph nodes, I feel it would be best if Sloan could do it. Hopefully, all the stars align and it works out. *fingers crossed*

On a lighter note….I recently returned from a quick advocacy trip to NYC. 

Compassion & Choices asked if I would share my story and why I support Medical Aid In Dying with WABC7’s Ken Rosato for his Weekend Show – Viewpoint. Of course I said yes! It’s important to keep this important topic at the forefront and keep the conversations going. It’s the only way to gain traction and enlighten people about why terminally ill people, like myself, want this legislation. 

The interview took place at the WABC7 studio in Manhattan. The same studio that Kelly Ripa and Rachel Ray call home! In fact, Kelly Ripa was live on the air when we arrived.

Corinne Carey, the Director of the NY Chapter of Compassion & Choices and I sat with Ken Rosato for 10 minutes. Corinne spoke about the facts and statistics of the other states that already have these laws in effect. I shared a shorter version of my story and why I’m in support. I also stressed to Ken that I am in NO way suicidal nor do I WANT to die. I want to live. God, do I want to live. That’s so important for me to have people that don’t know me understand. I so hope I made that clear. I think I did.

The segment, I’ve been told will air on July 27th and again in October. I’ll be sure to post links on my Facebook Blog Page and Twitter.

At least I didn’t look as awful as I felt on the day of the interview. šŸ˜‰

Nope, Not Worried At All

Last I updated, I was headed for a biopsy of my lymph nodes under my left arm and a biopsy of my ribs on the right side where I have had a large hard visible growth that is quite painful.

Both procedures were done on the same day and I was home by 2pm on June 2nd.
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The rib biopsy was by far the most painful. More painful than I remember it being. The “twilight” meds didn’t work and I was awake for the whole thing causing them to have to give me 3 doses of Fentynal because I could feel everything. My tolerance to pain medications is quite ridiculous. But boy did I sleep once I got home!

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I finally met with my Oncologist this past Friday.

The rib biopsy showed that I have a large collection of scar tissue from radiation therapy of my 9th rib from 2yrs ago. Per the Radiation Oncologist, side effects from radiation can continue long after radiation has ended.  There is no active cancer.

The lymph biopsy showed only lymph cells and no metastasis. This was very surprising but also a relief. Because this was something that showed up on the PET scan, I was pretty confident that the biopsy would be positive for cancer. My Oncologist’s exact words to me were: “We are cautiously optimistic but we will be keeping a close eye on this area going forward” Um…Ok. No so reassuring but not much I can do.

I’m still losing weight. Down another 5 lbs and to deal with that we are adjusting the Ibrance down from 125mgs to 100mgs. This should have no effect on the drugs fighting the cancer but more on the side effects of nausea and lack of appetite. 

Today, I received my tumor marker results. The one we watch closely is CA 27.29. Anything under 40 is considered normal. My number has been slightly over 40 for 3 months. This is significant because my number has been under 40 for over a year. Today, it jumped to 51.
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I know some will say that 51 is still pretty low and it is. I know some people that have their numbers jump up 2 or 3 HUNDRED points. But everyone is different and everyone’s numbers are significant to themselves. The fact that mine haven’t ever gone up like this and you add on top of that a suspicious PET (that for now is OK but we’re going to watch). I’m not feeling very good about this at all.

I said this back in May in an interview in Albany and I’ll say it again: “My prognosis is only as good as my next PET Scan”.  I’m very worried about my next PET Scan. A lot can go wrong in 12 months and I’ll be damned if I allow any of it to happen.

I have a graduation to go to.
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Happy Birthday! Your Treatment Failed.

It’s the nature of the beast. The way Metastatic disease works. We begin the best treatment option and hope it works for a long time. If you’re lucky, it does. Sometimes, like this time, your luck runs out sooner than you hoped it would.

I began Faslodex in January of this year and Ibrance in February once Insurance approved it. That’s the shortest run I’ve had because of progression.

The news wasn’t as ‘bad’ as it could have been. (That’s a lie…it’s all shitty when there is cancer showing in a PET scan). The PET scan showed cancer in the lymph nodes under my left arm near my breast as well as that painful spot in my ribs has grown bigger.

There are a lot of unknowns right now. I’ve never had cancer in my nodes before. Not even when I was first diagnosed and this is the “non-cancer” breast. This could be a totally new primary breast cancer with a new pathology. Also, the cancer in the ribs could be different now too.

So…..here is the plan of action:

Next week I will be having a Mammogram/Ultrasound and Sentinel Node Biopsy.Ā  Then I will be having a CT guided biopsy of my ribs (hopefully under some kind of sedation).

Once all the pathology comes back we can figure out what treatment will be best to keep this from getting out of hand. It is of utmost importance to keep this from reaching my organs for as long as possible.

I absolutely MUST be at my Son’s High School graduation next June. I will not accept any other alternative. If that means I get a little more aggressive with this treatment then that’s what I do. Any Doctor not on the same page as I am with this won’t be treating me.

Now, I will take some time for me. I will release the emotions I’ve been holding in all morning and have a good cry so that when Adam comes home he won’t see how scared and sad I am. He deserves to have the appearance of a ‘normal’ Mom for as long as I can give that to him.

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I’m A Fraud

I’ve been holding out on writing anything lately. There’s so much rattling around in my brain and it’s taken me a while to sort it out.

It’s kind of like when you open up a jigsaw puzzle and all those pieces fall out in a big pile. None of it makes sense. Some of the pieces are even stuck together in the wrong way. You know once you sort it out it will be the pretty picture you saw on the cover of the box and you’re excited to see how it all comes together. However, right now I need to get the end pieced and the middle pieces separated so I can work on the frame.

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That’s what I’m trying to do now. I’m trying to get the pieces in my head separated so I can start to work on the frame.

You see, many people see me as a strong person. A strong advocate and voice for the Metastatic Breast Cancer and Aid-in-Dying Community. And while that’s true, that’s just a small part of who I am. Others see me as a fierce and loving Mom of a smart almost Senior in High School Son. That’s also true. Still others see me as a loyal, “I have your back friend”. Another true statement.

What many people don’t know, what they don’t see because I hide it so well is that I’m actually a very scared, paranoid, anxiety consumed ball of nerves with an unhealthy load of guilt that I carry every day that gets heavier with each friend that died prematurely.

And that makes me a Fraud.

I push those emotions down. Stomp them down until they are all jumbled together like those puzzle pieces in the box so I don’t have to see them. Or deal with the how that finished picture will look.

So, I keep pushing the pieces around, because I havent been willing or ready yet to start working on what needs to be done. But that’s about to change.

I’m tired of being a Fraud.

I’m tired of ignoring my feelings because it makes others more comfortable. I’m done not being true to myself. I’m done not speaking up or backing down from a fight because others don’t fight fair and it’s easier to just take the high road. I’m done being bullied and letting people use my illness as an excuse to push their own adjenda.

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I’m going to dig deep and find the person I was before Cancer. I know she’s there. I know I don’t have to let that part of me go just because some people want me to believe she’s gone. Those are the people I need to ignore because they don’t believe in me nor do they have my back. Those people are the real Cancer in my life.

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Be patient with me as I go thru this process. I will still update on my medical stuff, upcoming PET Scan, which is May 16th. We will get to see how the Ibrance/Faslodex has been working.

You can follow the day to day updates on http://facebook.com/stickit2stage4

The Mind F*ck

Ask anyone. Living with Cancer is a total mind fuck and if you’re living with Metastatic (terminal) Cancer like I am it’s a never ending mind fuck roller coaster.

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Monthly blood work to see if the cancer is waking up and planning a move. Regular scans to see if your insides are glowing. You stay on top of your treatment plan to make sure the blood work and the scans stay ‘normal’ but when it comes time to do these things that’s when it becomes a Mind Fuck.

You worry before the tests, you worry during the tests and you worry after. What will they show? Will I glow? Is my treatment working? Can I exhale until next time? I don’t feel new pain. I bet my headaches mean bad news.

See what I mean? Total Mind Fuck.

I’m in deep, deep Mind Fuck territory right now. It’s a scary place to be in. It’s a different place than what I described above but could toss me up there if I make that call. If I tell. I don’t know if I want to. I’m pretending it’s not real, that the pain is not real. In my head, it going to go away. In my head, if I go for imaging it’s going to be negative. I’ll be just fine. So there’s no reason to tell. No reason to make that call. Or is there?

Mind Fuck

The Cancer is in my bones. The pain is in my lower back – my spine, my bones. The pain is real. It’s not going away. It’s getting worse. There’s a small lump. When I lay down or sit down it feels like I’m against a rock. There’s no rock to remove. I pretend the pain isn’t there. So, I put on a band-aid of pain meds and ignore what I know I need to do. I stare at my phone. Mind Fuck

I don’t want to be the “Girl Who Cried Wolf.” I don’t want to run to my Oncologist with every new ache and pain paranoid it’s more cancer and for the most part, I don’t. Mind Fuck.

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I’ve not had good experiences with imaging. I’ve had tumors missed, fractured ribs called ‘inflammation’ and PET scans not pick up active cancer.  Mind Fuck

The scenario plays out in my head. I pick up the phone. I call my Oncologist. She examines me. I go for a CT or MRI. She tells me it’s nothing. The painful rock in my back and the shooting electric tingling down my leg to my foot is “nothing.” Complete and Total Mind Fuck.

The next appointment on the books is April 22nd. In my heart I know that’s too long away. I also know no matter how bad the pain gets I won’t go to the Emergency Room. I stare at my phone. Mind Fuck.

This can’t possibly be new metastasis. I JUST started a new treatment plan in February. Ok, yes, my tumor marker did go up a little bit this last time. But that doesn’t mean anything definite. Most people have progression after MONTHS of being on a particular treatment. Not two months. Right? Mind Fuck.

I stare at my phone. Maybe I should wait for my next labs? If my markers go down then maybe it’s nothing. Or maybe it’s still something. If I wait, those little bastards could travel anywhere. Mind Fuck.

Sigh, I’m making the damn call.