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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Until We Meet Again

Social Media tends to bond people with similarities. Similar interests, hobbies, music and even illnesses.

Cancer is one of one of those illnesses that bonds people rather quickly. Especially terminal Cancer. We are a group of people that bond over treatments, side effects, helpful hints, advice, support groups and stories of when diagnosis happened.

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Deb Mumma is one of those extraordinary women I was lucky to have met thru Social Media because of our common diagnosis. Right down to the same pathology. We became fast friends and talked quite frequently thanks to our mutual friend – insomnia. There were many 3am conversations when Deb was recuperating from back surgery. If you’ve ever spent time in the hospital you know how difficult it can be to sleep for any length of time.

Deb loved her family. She spoke of her parents and how after as many decades they had been married they were still just as close as in younger days. Her husband, Ron passed after a long illness. It was very clear how much Deb missed him. The way she spoke of their marriage made me a little jealous.

The pride and joy, that always brought a smile into Deb’s voice were her Children and Grandchildren – 12 little ones in all! And of course her pups, Sully and Kiki.

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At Christmas we talked about our kids. Deb worked furiously on two identical doll houses for her Granddaughters. And then there was the trip to Disney World in March. Deb was so excited to tell her Grand kids and witness the expected ‘freak out’.  It was very important to her to make lasting memories as her health began to decline. Although she would never admit it or want to talk about it.

The first weekend in April, Deb helped me with a speech I gave in Buffalo (See previous post dated April 7). She knew how nervous I was and offered to read it and give me the honest criticism I needed. Then on Saturday night we Skyped so she could be my audience and I could practice giving my speech to her. Deb was selfless like that. Even though she had been feeling sicker from chemo and her liver failing she still made time to video chat.

Many of us with Metastatic Breast Cancer are active in some way with advocacy. Deb was no different. Her advocacy was on a local level. It was important for her to raise money for those receiving care at Cumberland Valley Breast Care in PA. Deb even designed a beautiful necklace with the help of a jewelry designer with part of the proceeds going to CVBC and to Breast Cancer Research. “Ribbon of Hope & Tears”. This is one ribbon I can endorse. It doesn’t have to have a pink gem. There are 10 gem options and 3 metal options for the ribbon.

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In the time I’ve gotten to know Deb, we had meaningful conversations and we were there for one another whenever we needed each other without question and regardless of the time of day or night. Deb knew I never muted my phone and that I am a very lite sleeper so the ‘ding’ of my messenger would never go unanswered if she needed to talk. I’m going to miss that. A lot.

“A dragonfly to remind me even though we are apart, Your spirit is always with me forever in my heart”…..Until we meet again Deb. I love you.

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Sharing My Story With Compassion & Choices for the NYS Aid-In-Dying Campaign

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The following is a speech I gave in Buffalo in support of Medical Aid in Dying Laws for New York State

I’m a wife, a mother, a daughter, a sister and an aunt. I’m also a supporter and advocate of Aid-in-Dying laws in NYS and I’d like to tell you why.

In August of 2013, I was diagnosed with Stage 4 Metastatic Breast Cancer. I went to my Doctor for what I thought might have been a kidney infection but an MRI revealed I had a tumor on my spine so large that it was compressing the nerves causing me the constant pain I was feeling. It was 1mm away from my spinal cord. It also showed a tumor in my ribs. It wasn’t until after the PET scan that we learned that the primary tumor was in my right breast. It was shocking, because 9 months earlier I had had a clean mammogram. I was 43 and I had terminal cancer.

There wasn’t a question then or now of how I would treat this cancer. Despite the median lifespan of 36 months, my mind set is that I will do whatever treatment options my Dr’s recommend until I’m physically unable or there just aren’t any more options or clinical trials available.

Having Stage 4 Metastatic Breast Cancer means that I will always be in treatment. I will stay on whatever treatment plan is working until it fails – and by fails I mean that we will see the cancer spreading on a PET scan or I can no longer physically tolerate it. I’m currently on my 4th treatment plan.

To date, I’ve had radiation to my spine and ribs, my Ovaries have been removed and 2 breast surgeries. I receive 3 monthly injections – 1 to increase my bone stability and 2 injections to supress what’s left of the estrogen in my body (estrogen fuels my cancer). I take an oral Chemo pill that affects my blood counts and at times makes me want to sleep for days and I take a few other medications to help with the side effects from the Chemo.

As you can imagine a diagnosis like this sends your mind into overdrive. I began thinking of things I thought were decades away like “I’m going to need a will”, “What do I want my funeral to look like”, “I need a Health Care Proxy” and “Who will take care of my son.”  I had a lot of conversations with myself in bed at night. Of all these decisions I’d have to make, I already made up my mind about one very important decision: How I want to die.

I did a lot of research and asked my doctors a lot of questions. The way Metastatic disease works is that once it figures out how to get around a particular treatment, it continues to travel to distant organs. In my case, it began in my bones so the next major organ will either be my lungs, liver or brain. That’s when it gets harder to treat. Ultimately, I could end up suffocating if my lungs become too compromised.  If my liver fails I’ll be unable to eat and be in horrible pain. If the cancer travels to my brain I will suffer seizures, uncontrollable migraines and could lose things like my memory, sight and speech. Quite frankly, none of that is OK with me.

I remember being with my Aunt when she was in hospice. She had pancreatic cancer. Seeing her so medicated that she was unaware of anything and anyone was awful to me. There were times she writhed in pain and was unable to communicate. She lingered for 2 excruciating weeks. That was not how I wanted to die.

As I look back over my life; my greatest accomplishment without a doubt is my Son. He’ll be 17 this summer. No question, my Son is the reason I do and will continue to do whatever I have to in order to stay alive. He’s the reason I take the Chemo pills that cause me the constant fatigue, headaches and nausea. He’s the reason I happily get the injections that make me cry when they stick the two 3 inch long needles into my muscle that I can feel for days after. And he’s the reason I will keep going and never say “I can’t” or “It’s too hard”

Since my diagnosis we’ve gone on some really nice trips and had some great experiences. It’s all about making memories now. The one memory I’m absolutely positive I do not want to leave him with is my painful and lingering death. I don’t want him to look back and see me in a bed, unable to communicate, medicated and waiting for my body to give out. That would cause me unimaginable stress.

You may have heard or read or even feel that Aid-in-Dying is suicide. I’m here to tell you that it’s not suicide at all.. Aid-in-Dying is about having end of life options. I want more than anything to live another 40 yrs but the reality is that I won’t. I will do whatever treatment options are available to me and any clinical trials I qualify for. I will continue to utilize palliative care team for pain and comfort, but when that stops working; that’s when I want another option.. My terminal illness has taken so much from me already and ultimately it’s going to take my life. I want to be able to choose how I will die when my time comes. I don’t want my illness to make that choice for me. I need my representatives in the State Legislature to make sure I have that choice in the end. If you also want to have a choice, I encourage you to contact your State Legislator so you can be heard.

Thank you.

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.

A Very Special Day

Today was a very special day.

As parents we ‘check of’ the various milestones our children reach and make mental notes of those that have yet to come. When you have a terminal illness you find yourself playing a kind of ‘beat the clock’ between yourself and these milestones. Hoping that you’ll still be around to see all of them just as you would if you weren’t sick. Except the milestones become that much more bittersweet. (Will that one be the last? Will I be well enough to see the next one??)

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Today was one of those milestones and not only was I there for it but I felt good. I felt like every Mother should on this day: full of excitement, anticipation and a stomach full of knots.

Today, my Son took his road test to get his Drivers License.

He was SO nervous. He made me wake him extra early so he could get in a few extra parallel parking practices. He didn’t need it but I indulged him.

As I watched him drive away for the test, I flashed back to when I let go of his two-wheeler and he rode his bike without falling. He was doing it and I was here to watch just like before.

The whole test took 7 minutes but it was the longest 7 minutes of my life and I’m betting it felt a whole lot longer for him. While I waited for the DMV Rep to finish the paperwork I caught my Son’s eye and he gave me the ‘nod’ that told me he passed. It was all I could do to hold in the tears.

After all the phone calls and text messages were made telling the good news, I let Adam drop me off home and allowed him to drive to school and work…..alone. He earned this victory drive. I did make him promise me to let me know he made it safely to school since I wasn’t riding shotgun.

Fifteen minutes later I recieved this text message:

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Oh, how I love my sarcastic smarty pants child.