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. 

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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!

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 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.

How Loud Do I Need to Get Before Someone Hears Me??

The last month has been very frustrating.
It started out with me doing something to my side/rib area while making my bed. I felt a ‘snap’ and it immediately brought me to my knees. I honestly didn’t know if it was a pulled muscle or worse. I had plans to have lunch with my Mom and after she insisted I go to Immediate Care and get checked out. I was having a difficult time breathing. Long story short the verdict was I fractured the rib I had previously radiated. I was a disc. This was on a Thursday.

I managed to get thru the weekend with some breakthrough morphine. Tuesday morning something changed. I woke up in even more pain and was unable to take a full breath. Around 3am Wednesday morning I woke up feeling as if I couldn’t breathe. I was scared. I finally woke up my husband and he took me to the ER. One thing about having Stage IV cancer is that you get taken right in when you go to the ER. I told the intake nurse I had fractured my rib and now I couldn’t breathe and was in horrible pain. My BP was 159/105.  I had an EKG, more X-Rays and a CT w/contrast. The CT was horrible. I was sure I would pass out before it was over. I could NOT breathe. When I finally got back to my triage room, still fighting to breathe, I pushed my call button for help. The nurses couldn’t care less. There was no sense of urgency, they spoke to me in a condescending tone and asked me what I wanted them to do. Um, gee, maybe HELP ME?!?  Finally, the Dr came in and said the tests showed no clot in my lungs and I was fine. FINE?!?  I was NOT FINE. What was going on? I was truly confused.

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Thursday I had a regularly scheduled appointment with my GP. I went thru my whole story about the rib and the ER. She goes thru my tests, looks at the images and then says “Who told you fractured your rib?” I told her Immediate Care and I gave her the disc. She said…”Well, according to what you had done at the ER, there’s no fracture “. Then it hit me: the reason I was treated the way I was is because they thought I wanted drugs. I was pissed. I even told them I didn’t want narcotics because that wouldn’t fix the problem!  The good news was my cholesterol went down 16 points.

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Still living with the pain, I begin to feel a rattling in my right lung. I have no fever, no cough. The following Tuesday I see my Palliative Care doctor. Again, I tell her what’s been going on with my not really broken rib and horrible pain. She takes a listen to my chest and tells me I definitely have fluid building. She tries contacting my Oncologist. I told her it wasn’t a big deal, I was seeing her in 2 days.

Thursday, I see my local Oncologist and get my Xgeva injection. My local Oncologist tells me she believes I DID fracture my rib. Now I’m really confused. She examines me and checks my oxygen saturation a few ways. Laying down, sitting up and walking around the office. Laying down and walking around causes my levels to drop below 90. She makes a few calls and get a me scheduled for an MRI of my chest wall for later that day. She also suggests that I cancel my trip to Memorial Sloan Kettering. She doesn’t feel I should be traveling. When your Oncologist tells you not to travel, your brain begins to think about all the ‘worst case scenarios’. Chest wall mets, lung mets….cancer progressing.

I knew this would happen eventually. Just because I’m NED doesn’t mean the cancer is gone. Its still there. Its just too small to be detected. I was just hoping it wouldn’t happen until after my son graduates from High School.

The MRI was 60 minutes. There was no way I could have gotten thru it without Xanax. God bless Xanax.

With the MRI done we decided to make the trip to Kettering anyway. I wanted to update my Dr and I had a bunch of films to bring her too. For the 4th time I tell my rib/ER/lung fluid story. Basically, my Dr tells me there are only 2 scenarios. Fractured rib is the problem and pain is causing shallow breathing that’s causing fluid OR Cancer progression and we tweak my treatment. She discusses how there are still hormone treatments to try and other meds to add to what I’m currently talking. We dont necessarily need to jump to infusion chemo.  That alone makes me feel much better. So, the plan is if it is cancer I come back in a week for a biopsy and get a new treatment plan.

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At 5pm my phone rings. Its my local Oncologist from home. No new lesions, no progression, small pleural effusion on right side. Did I hear that right? No cancer?? No cancer.

I was so sure. I was positive. Seems like so many of my friends have been getting bad news or have died in recent weeks it just made sense to me that it was my turn. How is it not? I was numb. I should be happy. I should be jumping up and down but I just sat on my hotel bed and tried to process it. Its difficult for me to trust these tests. I’ve had so many that were read wrong when there was a problem, not to mention the rib – broken, not broken. How do I know this test is really right? My biggest fear is that the cancer is progressing but everyone is missing it. The same way I had a mammogram and my cancer was missed. The same way I had a lumbar/thoracic MRI and my spinal lesion was missed. My fear isn’t irrational. Its happened before.

I guess I just have to wait and see if the fluid keeps collecting. Wait and see if the pain eventually subsides. Until then I’ll just keep going on and try not to think about it.

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