scananxiety

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.

The Good News and Everything Else

stickit2stage42 Comments

The last few months have been busy. Lots of traveling in-between medical appointments and tests.

All the gallbladder testing and imaging did not turn out as expected, which in this case, is good news. There are no plans to remove it. It appears to be working just fine. Unfortunately, not much else has changed, so my GI doc (Dr. D) has put plan B into place. I’ll get into that in a bit.

Last month, I spent a few days in N. Carolina to take part in an advocacy project for METAvivor called The Serenity Project. It has two parts – an interview and an artistic part. The ‘artistic’ involved being in and underwater which was challenging. I sure no one wanted me to drown, but there were some times I was wondering….I’m JOKING. The entire project includes 10 Metastatic patients in all and will be debuted in December at the largest breast cancer conferences of the year, The San Antonio Breast Cancer Symposium (SABCS).

In addition to the “work” of the project, there were some fun things that had been planned, like yoga on horseback – yes, I did yoga on a horse. I also learned how to groom a horse too! Having never been on a horse before or even around them, I was excited to do this. Of course, the horse I ended up with was ‘hangry’ and wanted to do nothing but graze. She finally calmed down after she ate a bit of grass.

Shortly after coming home, I was back on the road to NYC. It was time for my 6 month PET/CT scan and check-up with my Oncologist. More good news, scan still showed no new evidence of disease.

Once my appointment wrapped up, hubs and I were back on the road to take a much-needed break in Florida. There is nothing better than morning walks on the beach, feeling the sand in your toes and finding shells along the way. If there is something better, I don’t want to know about it.

Now, for the ‘other’ or that Plan B I mentioned earlier.

The main issues are that I can’t stop losing weight and I have significant pain every time I eat. I must have another ultrasound of my abdomen and an upper GI with barium (yum). Dr. D also put me back on Omeprazole to make sure it’s not GERD, something my Oncologist at Sloan brought up mainly because I’ve had that issue before.

If all of that is negative, exploratory surgery is next. In anticipation of that happening, I have a consultation with a surgeon. If it were up to me, I would skip the tests, jump right to surgery and get to the bottom of this crap.

Then he hit me with this….sigh…I have about 10lbs wiggle room but that’s about it. If I continue to lose weight and get to or below that 10lbs, we will have to have conversations about a feeding tube or a PICC line for nutrition. (Link included to explain what all that is). That’s a hard pass. Nope. No thanks.

So that’s what’s happening and where things stand.

As for where my travels are taking me next, I’ll just leave this here…..

It’s All Very Bittersweet

stickit2stage48 Comments

It’s been six days since I traveled to New York to have my most recent PET/CT to see if the treatment I’m on is still working.

Six Days.

Six days are an incredibly long time to wait to get results for any scan but especially a PET scan. Waiting for the results of any scan that will tell you if the cancer is active and taking up residence in new parts of your body is just as  anxiety inducing, if not worse, as the time leading up to and the day of the actual scan.

I called Sloan last Friday to see if the report came back but was told that my Oncologist didn’t have it yet and that she would call me as soon as she had it. Great. I had to wait over the weekend.

I couldn’t help but think of my friends who are dealing with progression and treatment changes right now, like Susanne and April.

We all know that this is all part of it but when it does happen it still hits us like a punch in the gut. Each time we know one of us is going for a scan I think we all hold our collective breath  until we hear the news trickle through the interwebs and our circle of friends. It’s like we are all going through it together. We all feel that gut punch when there is shitty news and we all celebrate and throw fist bumps in air when good news is shared.

Then my thoughts go to the friends that are no longer here.

This year has been full of loss. Big loss. For me, it’s a messy combination of sadness, grief, anger and a whole lot of guilt. It may not make sense to some but I do feel guilty for still being somewhat OK. Survivor’s guilt they call it. Believe me, it’s real and it’s no joke. There are day’s that I would trade places Beth or Alexis or Mandi or Jennifer in a heartbeat.

But for now, according to my doctor, I will keep on the current treatment plan I’ve been on for the last (almost) 2 yrs. It appears to be working. Despite the pain in my back. Despite a rising tumor marker. There are no new metastasis that were picked up by last week’s scan.

I made my doctor tell me again. I didn’t believe her.

Then she handed me the report.

“NO SUSPICIOUS MALIGNANCIES”

My shocked, I’m oh, so happy….but it’s very bittersweet.

 

~Happy Thanksgiving Everyone~

I Did A Little Math – The Eve Of My 12th PET Scan

stickit2stage44 Comments

Tomorrow morning I head to Memorial Sloan Kettering for my 12th PET/CT Scan.

Twelve. That number seems low to me.

I actually went thru my online charts and counted all my scans since I was diagnosed. I’ll be having my 12th PET/CT in 4 yrs. While it didn’t actually work out like this over the last 4 yrs, it averages out to be a scan every 3 months. (Thank God for easy elementary school math!). However, if I were to include all the MRI’s, CT’s and other tests, I shudder to think what the average would look like then.

Recently, I met with a filmmaker that’s working with the Compassion & Choices NY Aid in Dying Campaign. The opportunity also afforded me to see the lovely Amanda Cavanaugh, Outreach Coordinator for C & C. We spent some time in a few locations around Rochester. During the filming I shared why I’m in support of Aid in Dying Laws in New York State and why this is issue should be a bipartisan, non-religious, HUMAN issue between the patient and his/her doctor.  One of the locations happened to be The University of Rochester, where my Son is a freshman this year. It was very surreal. I couldn’t help but acknowledging how ironic it all was. Here I was talking about Aid in Dying at the University my son attends shortly before I find out if my treatment has failed. How’s that for tempting fate???

The anxiety hasn’t kicked in yet. But it will. It always does. Eventually.

Everyone has a different way of dealing with an upcoming scan. There is no right or wrong way to handle the anxiety and PTSD that comes with scans like these. Coping mechanisms may even change over time. What worked for us in the beginning may not always work for us every time.

Here’s mine….because I’m a realist.

I always set myself up to expect bad news. I do this because I never want to be caught off guard by bad news ever again. I will never forget how it felt to hear my doctor tell me I had cancer as that conversation came out of left field. It sucked all the air out of me and I never want that feeling again. I would rather be completely relieved by good news than be kicked in the gut by a bad report.  I also don’t ever want to be cocky enough to assume that I won’t get bad news; because sooner or later I will. It’s inevitable. This time I even prepared Adam.  I would like to come home and tell him that I dodged another bullet, but until I hear those words myself, I’ll be mentally preparing myself for the “I’m sorry’ look in my Oncologist eyes or that tone in her voice if I get “THE” call as she gives me the news.

I’ll have my answers soon enough.

 

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. 

Almost Out Of The Woods

stickit2stage412 Comments

I’m THREE days away from turning 47 yrs old. According to the statistics (and my Oncologists back in 2013) I shouldn’t be here to celebrate this birthday. But for those that know me in real life (or know me well enough ‘virtually’) know that I HATE being told what to do. In fact, I will go out of my way to do the exact opposite of what is being forced on me if I don’t like it or don’t want to do it. So, here I am! Suck it Cancer!

Yesterday, was a glorious day in Manhattan. The sun was shining down and warming everyone and everything. It was a perfect day to walk the streets and enjoy the day. Which I did. Between the PET Scan and seeing my Oncologist. They were in two different buildings a few blocks away! It was also a perfect day to meet my friend and Underbelly partner, Rebecca Scheinkman. We both had scans at Sloan Kettering and were able to meet after our appointments to chat and hang out for a bit.

18489706_863341377152854_1187025503110193828_o
Susan Rahn & Rebecca Scheinkman

OK, so without further adieu, here is the update: I received a call today from Sloan and my PET scan showed that I AM STILL STABLE. The nodule in my lung on my last PET scan did not light up as active cancer. This is the BEST possible news and quite frankly I am surprised and happy all at the same time. When your Doctor calls you and the message left is “When you call me back, have me paged”, well, you tend to think, “Oh, Shit, here we go”

However – I am still not out of the woods just yet. Both of my Oncologists have agreed that I need to have a Brain MRI and that will be happening within the week. There are some symptoms I have been having that they are both concerned with and want to rule out any metastasis. I haven’t spoken about these symptoms on Social Media because I didn’t want to make too much out of it and I figured I would wait and run it by my Doc’s before I started to push the panic button. I’m still not, but when they both agree that they want to look at your brain (thankfully, they actually feel I have one!) you can’t put the Xanax away just yet. They also want me to re-visit my Cardiologist due to some palpitations (or fluttering as I call it) that have been happening that cause me to cough. I do have two minor leaky valves that everyone knows about so they are erring on the side of caution and having him check this out.

So, there you have it. Over all, good news. So far. I just need to get through these last few tests and appointments and THEN maybe I can relax until the next scan in November. Wait, did I say relax?? Silly me, there won’t be any of that just yet with Adam’s Graduation next month, Adam’s Graduation party, Adam’s 18th Birthday (Holy Crap! Where did 18 years go??), getting him ready for College and moving Adam into his dorm.

Thank you for following along on this roller-coaster with me. I leave you today with a picture of Bella because she’s so darn cute.

20170518_072451
Bella Rahn