pain

Adiós Gallbladder

stickit2stage43 Comments

Following up on the previous post The Good News & Everything Else.

As instructed, I completed two more tests that my GI doc scheduled in trying to identify the cause of my abdominal pain and weight loss. The first was an Abdominal Mesenteric Ultrasound w/Doppler. The second was an Upper GI w/Barium. If I never have to swallow barium again, it will be too soon. If you’ve experienced barium, you know what I’m talking about. Nasty.

The following week, I met with a Surgical Oncologist who was going to review the notes, all the tests/imaging (including the results of the new tests) and make his recommendation. I went into this consultation 95% sure those last two tests were “unremarkable” aaannndddd I was right.

However, Dr S determined that based on my complaint of pain, location of pain and weight loss, that removing my gallbladder might solve the problem as my symptoms are all indicative of gallbladder issues. He also said it was entirely possible that removing my gallbladder wouldn’t make any difference at all BUT he recommends removing it anyway.

So, while all the tests said my gallbladder is A-OK, the date was set for July 30th. The Monday after I returned from San Francisco.

My “It’s 6am and haven’t had coffee yet” face

Surgery went fine. I was home by 1pm. Pain from the 4 small incisions was minimal. I didn’t even need so much as an Advil. The only issue so far has been nausea. Horrible, ridiculous nausea. That’s now under control with an adjustment of anti-nausea meds.

On Friday, I received an unexpected note from my Primary Care Doc. She had the pathology report on my gallbladder. Apparently, those little suckers can be sneaky AF and mine definitely was:

Adiós gallbladder, you will NOT be missed.

When “It’s Nothing” Becomes “It’s Something”

stickit2stage43 Comments

If you’ve been following my blog, you’re familiar with my track record of “aches and pains” that turn out to be nothing or have no explanation. It’s become kind of a light-hearted joke between me and my Oncologist. She will ask me how I’m feeling and I usually respond with something like: Does it matter? Because it will end up being nothing anyway. And then we laugh.

At my last appointment she wasn’t laughing. My continued weight loss has now gotten her attention and not in a “you’re gonna rock that bikini this summer” kind of way. When she asked me how I was feeling, I casually mentioned some discomfort I was having on my right side. It’s particularly bad after I eat. It’s not unusual that I go a day or two without eating until the pain subsides. That conversation earned me an appointment at the end of the week with my GI doc.

I like my GI doc. I haven’t seen Dr. C in a while but he listens and doesn’t shrug off symptoms or why you’re there.

He looked concerned from the moment he walked in. He had spoken to my Oncologist. He asked all the typical questions about why I was there; typing all my answers into my chart on the computer. The physical exam was next. He pushed and pressed all over my abdomen. When he pressed on my right side below my ribs I saw stars and the look on my face caused him to nod. He matter of factly told me my gallbladder was inflamed and it needed to come out. Huh?? But it’s always nothing. Now it’s something?

He began writing orders for tests. He wanted to make sure there wouldn’t be any surprises for the surgeon. Swell.

Ultrasound, Upper Endoscopy, HIDA Scan and then surgery. They scheduled the ultrasound later that afternoon -no time like the present. Endoscopy is this coming Wednesday. Doctor C isn’t messing around.

Hopefully, when it’s all over with I’ll be more comfortable and eating won’t be a nightmare anymore. I’m not going to lie, if I start gaining weight again, someone’s going to hear about it.

So this year, instead of a birthday party, I’ll be having a “Going Away Party” for my gallbladder! Everyone’s invited!

It’s Always Something 

stickit2stage43 Comments

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. 

Quick Update

stickit2stage45 Comments

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

stickit2stage410 Comments

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

stickit2stage42 Comments

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.

image

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.

image

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.