It’s Always Something 

It’s been a bit since my last update and some things happened. They usually do. So it’s time to get caught up.

I’ve been back on Morphine for the last few months for new pain in my right side. It’s hard to pinpoint exactly where it is so let’s just say it’s in the area of my thoracic/rib region. 

When I saw my Oncologist at Sloan she ordered standard X-rays to see if I might have broken a rib. It didn’t feel like a broken rib and it wasn’t. No surprise there. Her suggestion was that if the pain persisted to move forward with a PET/CT. 

I decided that I would wait until my scheduled time and not do it early for a few reasons. First and foremost, should I have the scan too soon and there is something brewing it may not pick up what we need it to. Active cancer has to be at least 8mm before a PET/CT will detect it. The other reason for holding off is that I’m now on Medicare and I will only be “allowed” so many PET/CT scans before they tell me I’ve reached my max. Once that happens I will have to rely on CT Scans and Bone Scans which aren’t as reliable as PET/CT Scans. I want to be very careful with how and when I get scanned now. So, I will manage the pain and wait until November.

MEANWHILE……

Because I’m me and wacky things always seem to happen to me, September proved to be no exception. Although it began around the end of August. Here’s what happened…

I began to notice that my head felt sore. My actual skull. The left side hurt when I laid down to sleep or if I touched the side of my head. (Yeah, I know, don’t touch it). Every day the pain began to get a little more intense and the left side started to feel “lumpy”. The pain began to wake me up during the night. If I didn’t stay on my right side I would wake up in pain. 

I had my usual appointment with my local Oncologist coming up so I just dealt with it. It was maybe a week. Then the Monday before my appointment, the lymph nodes down my neck, at my hairline and near my clavicle popped out and were very angry. This made the pain in my head feel worse. My head felt super heavy, The left side of my head felt funny. No fever though.

I go to my appointment and casually mention what’s going on. The nurse looks concerned and mentions it could be shingles. (I’m screaming inside). 

Everything changes when my Doc comes in. 
She examines me, I fill her in. And she tells me to “follow her finger with my eyes” Nope. I can’t do that. I try but my eyes want to cross and it hurts my head. That, combined with my angry nodes, sends up red flags for her and the next think I know I have a STAT Brain MRI scheduled, a CT of my neck, I’m put on steroids AND they want me in to see my neurologist immediately. (Well, that escalated quickly).

So, long story short…I love my Doc for giving a shit about my freaky symptoms when I was trying not to make a big deal out it. My brain is still “unremarkable” (which is what cancer patients want their brains to be) and is not (yet) home to cancer. All of the strange symptoms have since disappeared (of course) and I stopped the steroids after 3 days. The CT of my neck was cancelled when my MRI came back negative and no one has any explanations for any of it. Big shocker – they never do.

So, now with all that out of the way, I can concentrate on my upcoming travels. In a few weeks I’m heading to Memphis for a conference with Living Beyond Breast Cancer where I’ll be participating in their advocacy training program Hear My Voice. Then the following week I head to Washington DC for the 3rd Annual Stampede and Die-In.

Stay tuned for updates on my travels/health updates and as always you can head over to The Underbelly where you can also find me. 

Advertisements

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.  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.

image

The Murky Waters Have Become Clear

It’s been a very rocky month.

Since my second breast surgery and learning of progresion in my ribs, I’ve started a new treatment of Ibrance/Faslodex and had another PET Scan.

Going into the PET Scan, we were expecting to find further progression in my lung and liver. I was very relieved to learn that was not the case. However, there was ‘intense uptake’ in my tonsils and in two quadrants of lymph nodes in my neck. I needed to know if this was the beginning of something else so I saw my ENT. I was again relieved to learn that, for now, I’m OK. Having my tonsils out should be considered but as long as it’s not an immediate concern they are staying put.

While all this uncertainty was playing out I had a lot of time to think of how I see my future playing out and how I want things to be. It renewed a belief that I’ve had since my diagnosis and that is I don’t wish to have this disease consume me when my treatment options end. I want to die on my terms and when I determine its time.

Last year I was interviewed by local media about the Death with Dignity when New York State law makers announced they wanted to introduce legislation. It was after that interview that i contacted Compassion & Choices and worked with them on an Opt ed piece that was published in my local newspaper November 2015.

image

This past Wednesday I was interviewed again when Senator Amy Paulin announced she was joining the cause for Death with Dignity legislation after a family member suffered thru a cancer death.

http://http://www.whec.com/article/610/?vid=3128129

I feel like this is a renewed direction I need to go in. Not only for me but for those that also want to have this same choice. And that’s what this is. It’s a choice. It’s not mandatory. Its not something to get talked into. It’s an option. It’s something you can decide NOT to do too. 

Death with Dignity is also NOT sucicide. It’s very important to me to change the stigma. Death with Dignity is choosing to die on your own terms when you don’t have the option to live. Suicide is taking your life when you are otherwise healthy and have more of a mental/emotional issue.

image

Some people that oppose this option do so because of religious reasons or because they fear that the person will somehow be taken advantage of by others. In other words, they’d be ‘talked into’ it because it’s the ‘easy’ option for the caregivers.

Growing up Catholic, I’m very confident and comfortable knowing that MY God doesn’t want me to suffer and more importantly wouldn’t want my Son to watch me suffer and die. MY God wants me to leave my Son with all the best memories I can and non of them include me laying in a bed wasting away or struggling to breathe.

It’s OK if this isn’t right for you. It’s OK if you prefer the biblical, regular way to die. That’s why this is a choice. MY choice. And I am going to fight for this the best I can so this is an option I can choose from.

image