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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And The Verdict Is…….

It’s been some time since I’ve talked about the Brain MRI I had back in May and there was a reason. The biggest reason was that I didn’t want to jump to any conclusions or speculate ‘out loud’ while the two biggest events in my son’s life were happening – his graduation from High School and his 18th Birthday. Both of which have happened. (Happy Birthday Pup!).

I had a Brain MRI because I was having an increase in the number of migraines per week/month than I am used to having since being on a maintenance medication (Topamax) that is supposed to stave off the migraines. I have also been having some issues with the sight in my right eye as well as the hearing in my right ear and some cognitive issues such as some trouble finding words I want to say or just not remembering words at all. Both of my Oncologists agreed that a Brain MRI was the most logical next step with these particular ‘complaints’.

The results of the Brain MRI were a bit surprising. It showed that I have a small 6mm little brain baby in my frontal lobe. Not exactly what I wanted to hear. And here’s why. The good news is that this little guys is does not appear to be Metastatic in nature. My little guy is what’s called a meningioma tumor. Meningioma tumors are mostly benign and if they aren’t causing any issues they can stay put all comfy and cozy forever. In comparison to previous scans, it does appear that my little guy is growing and if he continues to grow, I will eventually need radiation to zap him back into submission.

OK, so there’s that. But it still doesn’t answer the question of why am I having increased migraines and the other issues. So, I was referred to a new Neurologist to see if she could get to the bottom of what was going on.

I spent 2 hours with my new Neurologist, Dr V. She was THROUGH. So much so she was asking my questions about my medical history so far back that I couldn’t remember! Things took an interesting turn when we got to the physical exam portion of the visit. (Relax, that’s not what I mean). Dr V did all the typical neuro tests – touch my finger to my nose, then to her finger. Follow her finger with just my eyes. You get the idea. Then she had my bend over a bit so she could examine my neck and press on various spots asking if this or that hurt. All was fine UNTIL she got to the right side of my neck and head and that’s when the mother off all pain kicked in and I was answering her with a loud YES, STOP! Dr. V seemed quite surprised to find the spots she was pressing on were painful to me and frankly, so was I considering that they didn’t hurt me 20 seconds before she started the whole pressing/poking process. She pressed up on my head as if following a path and each press hurt a little more than the last. EVEN MY HEAD!! What the hell was she doing?? I told her before she started this that I decided I liked her but now I was going to have to re-think my decision. She giggled at my statement, taking it as a joke but I was definitely NOT joking. This woman was hurting me and I wanted it to stop.

Finally, Dr. V told me I could sit back up. She told me she was pretty sure she figured out what was the cause of my complaints and probably the root cause of why I had been suffering from migraines for such a long time. Dr. V said I had something called: Occipital Neuralgia. Holy Hell. I have another damn medical condition??? So, Occipital Neuralgia is when the nerves that run from the top of the spinal cord up through the scalp, (those nerves are called the occipital nerves), are inflamed.

Dr. V tells me there is a procedure that can be done to ‘turn off’ that particular nerve and it will probably solve my issues and get rid of the pain I’ve been in. Um, OK, tell me more….  She tell’s me that the Neurosurgeon can do a procedure called a Nerve Block where he will inject pain medication into various spots along the nerve and in effect ‘block’ the nerve and kill it. Said in an easier way, it’s an epidural for my head but will last longer. I was all for it UNTIL she tells me WHERE the injections go. NEEDLES IN MY NECK AND MY HEAD. (There really needs to be a better way) Oh, yeah, and the best part, Dr. V tells me that yes indeed, there WILL be pain. LOTS OF PAIN. Oh goodie! Where do I sign up???

Regrettably, I am having an Occipital Neuralgia Nerve Block on Monday morning. I did tell Dr. V that I would be taking some Xanax prior to the procedure and she was agreeable. Which is kind of funny because she really didn’t have a vote in the matter. I am ONLY doing this because I am having 3-4 migraines a week, the vision in my right eye is not good and when my head hurts it’s almost impossible to see. When I don’t have a full blown migraine, the right side of my face feels heavy and the hearing in my right ear is strange, like there is water in my ear after I’ve been swimming.

This has all been going on for the last 4.5 months and has gotten progressively worse. It makes being on the computer or my phone very frustrating because I can’t see things very well. Even if I wear those magnifying reading glasses that are supposed to make things appear clearer, well, not so much for me.

So, if you happen to think about it, on Monday, please throw some good juju my way. That this procedure is really not going to be as horrific as I envision it to be and that it gives me some relief.

(Next milestone is in 30 days – Moving Adam into his dorm room!)

Almost Out Of The Woods

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.

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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.

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Bella Rahn