Quick Update

Friday is my regular appointment with my local Oncologist and for shots. 

Last month I mentioned that I was having some new pain in my ribs/back – right side (cancer side that was previously radiated). At the time I wasn’t all that concerned but brought it up because that’s what we are told to do when we have “new” pain.  My Doc asked if it was bad enough to order a scan and I declined. Not all my blood work was back and I was hopeful this would subside on its own.

The next day the labs showed my CA 27.29 was elevated but not alarmingly so, and I shrugged it off.

In the weeks that followed the pain increased making sleeping difficult. I contacted Palliative Care and asked for a new script for morphine. The same script I was previously on and do take from time to time. In following up with PC, it was decided that an extended release should be added to give me more of a consistent level of pain control. (I feel like I’m going back in time).

Today, my labs came back. My CA 27.29 is up again. For me, it’s the highest it’s been since it came down 3 yrs ago. 

To put it all in perspective, while pain and rising markers can and sometimes do mean there is a progression of Cancer, it can also mean my body is reacting to inflammation of some kind. Markers do go up for reasons other than Cancer.

I’m trying to remain optimistic and not assume that this all equals something bad. (ok, who are we kidding, I’ve already started looking at what my options are if I have to stop Ibrance).

So, I will discuss with my Oncologist Friday, see what she thinks and go from there. 

Happy Hump Day!

A Little Bit Of PTSD

Today, I’m headed to Manhattan ahead of my PET scan and appointment with my Oncologist at Sloan Kettering. I usually enjoy the drive down but this time I’m a little uneasy.

 

Last year at this time I had a scan and was told the Lymph nodes under my left arm (non-cancer side) lit up real pretty. That set off a battery of tests and biopsies to confirm the possible progression and to see if the pathology had changed. I also had my ribs biopsied again as they also looked suspicious on the scan and had been bothering me for some time.

It had all turned out OK. No progression in either the nodes or the rib but it was probably the second most stressful time since my diagnosis AND it all happened right before my birthday, which happens to be this Sunday.

As I sit in the passenger seat of the car writing this and remembering the events of last year at this time, it’s hard not to let my mind go to that place. That place where I imagine my Oncologist saying she’s sorry but the Cancer has spread to (pick an organ of your choice). Don’t get me wrong, I’m not being “negative”. This is fear and the fear is real. At some point this IS going to happen. It COULD be tomorrow.

So, until then, I will put in my ear buds and listen to my favorite music that takes me to my happy place and try to refocus my thoughts. There is Adam’s graduation to look forward to next month and all the festivities leading up to that day so regardless of what happens, I’m not going to let it get im my way.

See y’all on the other side…. xoxo

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.

Just Don’t Think About It

I haven’t written in a while. I’ve been dealing with pain issues and getting thru the holiday season without needing bail money.

First, my pain has been off the charts. I’ve been having horrible pain in my hips/pelvis and back. The morphine I’ve been on isn’t helping and that’s not good. After emailing my Oncologist back and forth she increased my 12 hr pill to 2 pills every 8 hours with a separate 10mg morphine every 2 hours as needed. It helps, but unfortunately, I’m also sleeping. I can’t stay awake with this increase. So I only take the higher dose after Adam is home from school.

Now, on to tonight’s rant. Everyone deals with having a terminal or chronic illness differently. I happen to have a large network of friends on Social Media that I talk to daily. Whether I’m venting and getting support or I’m helping someone else with an issue. Sometimes we don’t even talk about cancer at all. When I bring up my Social media friends some of my family members think I’m doing myself a disservice and actually forcing myself to think about my situation and bring myself down. “Just don’t think about it.” Its what I hear often and it drives me bat shit crazy. I can’t do that. I mean its completely impossible to get thru a day without thinking about cancer in some way, shape or form. Its my life. Its what I know. Its not going away. Its the equivalent to telling a parent to not think about their child. Not thinking about my illness isn’t going to change anything. Its not going to ‘cure’ me. Its not going to extend my life. Its not going to stop the cancer from growing inside me. So, let me be. Let me surround myself with people that understand, that know what its like. Let me talk to people that can make me laugh thru the tears, that understand my morbid sense of humor and don’t judge me.

The only good thing about my cancer is finding these folks, bonding and forming the friendships I have with them. I’ll be honest, cancer isn’t making me a better person, its not making me look at life thru rose colored glasses like you hear from some people. Cancer wasn’t the ‘gift’ some people want you to think it is. Except, for friends like Mia, Lulu, Melissa, Nancy, Annmarie, Andi, Judy, Sandy and many, many more there is nothing good about cancer. Nothing.

So, stop telling me to ‘just stop thinking about it’ because I’d have to stop talking to my friends and I need them like they sometimes need me. Respect that I know what’s good for me. Respect my feelings like I respect yours.

Friday, January 9th is scan day. By the end of the day I’ll know if the pain is the cancer spreading. I’ll know if the treatment I’m on has to change. I’ll know if its just my hips or other bones or organs. I will go thru this week with a smile on my face and I will act like everything is OK. I will also be thinking about it. I will talk to my network of friends like I always do. I will also be thinking about it. I will have their support and they will make me feel better in a way only they can do.

And I will also be thinking about it.

The Numbers Game

This past Valentine’s Day I spent the entire day at Memorial Sloan Kettering in NYC (my home away from home) and had a battery of tests, scans and doctor appointments. It was my 6 month cancerversary and it was time to see if the hormone therapy I was on was working. My Doctor was pretty sure it was since my labs were looking good and the tumor marker numbers had been consistently been going down. To say it was a high stress day was putting it mildly. I wouldn’t know the results of all the tests and scans until the end of the day and I wanted to know now.

First I had a Mammogram and ultrasound to see if the tumors in my breasts had changed. I was not impressed with my tech. She had zero bedside manner. I understand she sees a lot of women but is it too much to ask that she at least be NICE?? My PET/CT scan was next. I couldn’t help but have flash backs to my first PET. Knowing you have cancer but unsure what kind of where it was coming from was the worst. Those feelings of terror and helplessness came flooding back. I tried to stay positive and concentrate on the fact that my numbers were good. This had to be a good sign.

After the PET/CT we had a break and my husband and I had lunch at the restaurant on the corner. We kept our conversation light and positive knowing that in a few hours we would be meeting with my Oncologist.

Blood work was next and then we were in the room waiting for Dr. Modi. When she finally came in I wanted to jump out of my skin. Part of me didn’t want to know but she had the paperwork in her hand and she began telling us although the final report wasn’t back she had a partial read:  No Evidence of Disease. I immediately broke down in tears. I couldn’t believe the meds worked. My doctor was very pleased and we talked about how the hormone therapy would be what I would stay on for now. My husband was so happy. He told me he wasn’t surprised I had good news but I could see the relief in his face.

After my emotions calmed down the questions began: How long will this medicine work? What happens when it stops working? Will chemo be next? As happy as I was I still felt as though I had a cloud over my head. After all, at some point the cancer will figure out how to get around the meds and will start invading my bones again or worse. It’s like telling someone getting a cast off their leg that they can run and jump again but sooner or later their leg will break again. It’s a strange limbo to be in. My Oncologist explained that they would monitor me by the blood work. If at any point the blood work changed they would move on to scans. So now, it’s all about the numbers.

In April I began experiencing severe pain in my ribs and chest. I spent 5 days in the Wilmont Cancer Center where they ran test after test to figure out where the pain was coming from. I was on massive doses of dilauded that I pumped every 30 minutes. Their first thought was that I had new metastases but all the tests were normal. I was referred to Pallitive care for pain management.

I have my blood drawn every month where I live so my doctors can monitor my numbers and also when I’m in NYC. In May one of the tests came back higher than the previous months. It threw me for a loop. Did my meds stop working already?  Was the cancer coming back? Although I wasn’t out of range yet I was a the tippy top of it. Any higher and I’m outside the normal range.  I’d have to wait another month to know for sure. When I told my Oncologist about the blood work at my next appointment she had me schedule a PET scan for July. Great.

Much to my dismay the pain I had in April returned and it hasn’t gone away. I’m on a different pain med but no matter what I take it’s still there. Monday I go for my monthly blood work. I’m very anxious about it because I’m sure of what the results will show. It’s a gut feeling I wish wasn’t there. Along with the constant pain that fluctuates between manageable and wanting to hurt someone most of the side effects of the hormone drug I’m on are gone. This is another reason I’m sure there is a problem. At least when I had the side effects I knew the meds were working. Now I’m not so sure anymore.

My hope right now is that the numbers aren’t as high as I fear they will be. And when I get back from our family vacation I’ll have the PET scan and find what I’m facing. Until then I’m going to do my best to stay positive, enjoy our upcoming vacation and make as many memories as I can with my family.