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!

The Big Stick Failed

This past Monday morning was the Nerve Block procedure for what my Neurologist, Dr V said was Occipital Neuralgia.

I was extremely anxious beforehand and debated between taking Xanax or Ativan to relax me and make the procedure more bearable. Xanax won. About 45 minutes before we left I took it and then as I was about to walk out the door took another half because NEEDLES IN MY HEAD.


I didn’t see Dr V this visit. The Neurosurgeon, Dr C was doing the Block. He seemed nice enough and explained how it would all go. He told me that I would have the best luck if he did BOTH sides instead of just the right side. (OH MY GOD, WHAT??). I could feel my blood pressure rise and hear my heart beating in my head. 

I didn’t need to lay down. I just had to sit with my back to him, facing the door and bend my head down as if looking as my lap. He began moving my hair and parting it to find the spot he needed. He had me hold my hair for him as he wiped my scalp with alcohol. He hadn’t even hurt me yet but I could feel the tears coming. Then he said the most horrible thing ever…”Wow! This is a big needle!” He wasn’t being funny or trying to bring levity to the situation. He actually meant it. There was no stopping the tears now.

1…2…3…Poke! I cannot even accurately put into words the intense stabbing, stinging pain of that needle. He pushed it in deeper and then he turned it while it was in my head. All the while injecting the numbing medicine into the nerve. I couldn’t stop myself from yelling out in pain. Then he was done. With just the right side. 

Dr C gave me a few minutes to compose myself while he dabbed my head making sure there wasn’t much bleeding. Then the whole process began on the left side. I’m not sure why but the left side hurt even worse.

Thirty minutes from the time I walked into the Office from when I walked out and it was over. My entire head throbbed. My eyes were puffy from crying. I just wanted to go home.

I slept pretty much the rest of the day.

Wednesday morning the migraines started again and I’ve woken up with one every morning since. Pretty disappointing. 

Quite honestly, I’m not sure what I’m going to do. I don’t want to have my meds changed. None of the options were good and they all needed approval from my Oncologist. I should be thankful this is my biggest problem right now.

Next month, I’m off to Sloan for a check-up and then I help move Adam into his dorm!  

Go Yellowjackets!!

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!)

Proudest Moment Number 6,535 (and counting!)

Last week was a very big week.

It was a big week for me but more importantly, it was a very big week for Adam.  Adam graduated with honors from a school he has attended since the 6th grade: Bishop Kearney.

I don’t mean to take anything away from Adam. I only mention that it was a big week for me because when I was diagnosed back in 2013 no one was sure if I would be alive to see this day. This day was the only goal I had set for myself (and I made it my medical teams goal too). Regardless of what condition I was in, I WAS going to see my son walk the stage and get his diploma. Last week, not only did I accomplish that but I’m doing OK right now. Better than I had envisioned and I’m so blessed. (That reminds me, there will be an update on the Brain MRI I had at the end of May – stay tuned for another post).

Moving on to a more uplifting topic…… OMG ADAM GRADUATED!!!

The Thursday of Graduation Week (June 8th), there was a Baccalaureate Mass at the neighboring Catholic Church. Bishop Matano was on hand to officiate the Mass. The Graduates entered church as a group and then sat with their families, giving a white carnation to their Mothers (ME!). I am proud to say that Adam had so many family members there that we not only filled the reserved pew but we took over the pew in front of us as well! In addition to Adam’s Grandparents, my Mother and Father In-law, Pat & Bill, Sister In-law, Kim and Niece Leah also came.

On Friday (June 9th), Adam had almost a full day of rehearsal for Graduation. As National Honor Society President, Adam was to deliver a speech. He was instructed to arrive before the other students so he could practice on the stage. We were like two ships passing in the night that day. I had an early morning Dr appointment so I didn’t see Adam before he left. I came home to find an envelope that looked like it was from School. When I opened the envelope and realized that it was a handwritten letter from Adam, the tears began flowing. (I made a mental note to ground him when he got home for not warning me this was coming so I could adequately prepare to read it).  This is what he wrote:

Mom,

How can you thank someone who’s given you everything you have?

The person I am today is the result of everything you’ve done and all of the sacrifices you have made to get me here. Next year, I will be attending one of the highest rated Universities in the entire country and when people tell me that my “hard work is paying off”, I do agree with them, but it’s not even close to half of the full truth.

You’ve done things for me that I would have dreamed impossible if I didn’t know better, for sending me to a private school for just about my entire life, to sending me on a week-and-a-half long vacation to Italy. Now, I am preparing to similarly do the impossible in becoming a doctor. If I’ve learned anything from you, it’s that I can do it, no matter how much I say otherwise.

In a few days I will walk across the stage in a packed auditorium for the first time. Four years later I will do it again, in a much larger room. Eight years from now, the room will be smaller, but the applause will be louder. I said that you taught me I can do anything – but the one thing I cannot do is thank you enough for setting me up for success.

With All My Love,
Adam

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My Special Letter

I am not even lying when I say that it took me damn near 30 minutes to get through the entire letter because of all the tears and ugly crying. (His handwriting didn’t help much either).

This heartfelt letter came from MY KID! The boy, who for the most part, is on the quiet side. The boy, who to have a conversation with, you sometimes have to pull the words out of him. Wow. It’s going to take me a bit to pick out just the right frame for that letter. It needs a very special frame indeed.

I could tell that Adam was nervous and excited Friday night. When I went to say good-night to him, he was carefully picking out his clothes and laying them next to his Graduation cap. It was the most adorable endearing thing. (He’ll kill me if I say adorable).

I hardly slept Friday night. I was so excited. I went thru the memories of Adam’s life, like it was a movie. All of the amazing milestones: his first word, his first steps, his first actual sentence (yes, I remember that specifically because of what he said: “I hung-wee” and trust me, he has yet to feel full!), losing his first tooth, learning to ride a bike, and teaching him how to drive. The trips just he and I took: Hershey Park, the Corning Museum of Glass, Darien Lake, New York City. It’s absolutely astonishing to me to think that his childhood is all but over and he will be beginning this next chapter of his life.

GRADUATION DAY!!!!

June 10th 2017

Somewhere between laying his clothes out and sunrise Adam’s excitement got lost because when I went to wake him up he was none too thrilled. He finally rallied and he even agreed to a pre-Graduation picture! (after the threat of violence).

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Me and The Graduate

The ceremony started at 11am at Roberts Wesleyan College, however the students were told to arrive at 10am. That was fine by me because I wanted to sit in a very specific spot and wanted to secure my place in line. No one was going to stop me from being down front. NO . ONE.  I was going to be in perfect view of the podium so I could capture Adam’s speech on video. I give my husband props for standing with me in line until they opened the auditorium doors. I could rattle off about a thousand other things he’d rather do (watching paint dry) in that hour than standing in a line of people he didn’t know.

As soon as those doors opened, I bee-lined it in. I made my way to the row I wanted and waited for my family to catch up. Third row, stage left (for my non-theater folk, that means the right side of the stage). In perfect position of the podium to see Adam’s speech and to see him get his diploma. I was happy.

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Roberts Wesleyan College

It was a very nice ceremony. Adam gave his speech in between the speeches of the Valedictorian and Salutatorian. He spoke about all the work and fundraising that the National Honor Society did throughout the year. It was especially moving when he mentioned The Scoops Challenge that Adam and the NHS organized to benefit The Cancer Couch Foundation. This was the first year that the school did a fundraiser specifically for Metastatic Breast Cancer. It’s a fundraiser that they will continue to do every year during the month of October.
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Photo by: Bill Rahn

The Commencement speech was given by Patrice Walsh who not only is an Alumni of Bishop Kearney but a very well-known and respected local news reporter. She’s also someone I consider to be a friend and that made the day even more special to me.

To my surprise, Adam received an academic award in Social Studies. It’s a pretty fancy award too! It’s not the paper certificates that he’s gotten in past years. This one is glass and could do some damage.

And then it was time for the Graduates to walk across the stage! Thank GOD his last name is near the front of the alphabet because the waiting seemed to take FOREVER!!

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IT’S OFFICIAL!!

And just like that it was over. My Son had Graduated High School and I saw every single second of it. I have the memories, the pictures, the video of his speech and it was better than I could have ever imagined it.

Now, I reset the clock. I set the clock for new goals and new milestones to be around for. If I did it once, I can do it again and maybe again. At least that’s what I’m going to keep telling myself. Maybe, just maybe, my body and I will listen.

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The Proudest Mom Ever & My Handsome Graduate

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

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

Trying To Catch A Break

I should have listened to my gut and stayed in sunny Florida but you know, Adam and Bella needed me.

Spring break was uneventful (for the most part) until Wednesday the 22nd. I had my monthly Oncology and treatment appointment and was also looking forward to seeing a friend and fellow Stage 4 patient. Our appointments finally lined up on the same day. It was going to be nice to see a friend there for a change.

When I arrived, of course the nurse called me immediately and I didn’t have time to chat with Melissa for very long but we met up again in the infusion room. We eventually had some time to chat before we went our separate ways and that’s when my day went sideways or I should say “fell apart”.

I went to pick up lunch for Adam and as I walked into the restaurant I tripped on the sidewalk and fell HARD onto my right knee. I’m still not sure how I didn’t smash my face into the concrete but I didn’t. I literally couldn’t move for a few minutes because of the incredible pain. Thankfully,  a few very nice people came to my aid. The way my leg/knee looked and felt, the decision was made to call an ambulance and have me checked out. I’ll be honest, smashing my knee sure took the pain from those injections right away. Forgot all about them!

Big props to the Ambulance company and EMT’s that helped me. They were very nice. Unfortunately, the double dose of Fentynal they gave me while enroute to Strong Memorial didn’t touch the pain. I told Neil, the EMT who was stuck in back with me, that I have a high tolerance to narcotic pain meds and it would probably take a horse Tranquilizer to take the edge off. It was adorable that he thought I was joking. (See that bag in the picture? Because I ordered ahead of time I STILL managed to get Adam’s lunch thanks to the Manager at Panera’s!)

I was extremely lucky I didn’t break anything. After x-rays to my knee, hip and femur, it ended up being a very bad bruise to my knee cap. I was sent home with a brace, crutches and muscle relaxers. Not a fashion statement I recommend.

I was glad February was over. I was ready to start fresh with a new month. March had to be better, right??? Eh, not quite…..

Wednesday March 8th, I woke up with a fever of 102°. This was not good. Rule of thumb is that when you are on a medication that affects your white blood cells, any time you run a fever of 100.5° or higher you must call your Oncologist. Most of the time you end up in the ED.

I called. They ordered labs and based on those would make further decisions. At the time I had no other symptoms other than a wicked headache.

Next day, my chest began to burn. Still had that fever. Labs were fine. I was told to “keep in touch”. Um, OK? I debated much of Friday about seeing my GP and ultimately decided against it because I was afraid I would end up in the hospital.

By Monday, I was a wreck. I was weak, my chest felt like all my ribs were broken and I had trouble catching my breath. I saw my GP. She ran some tests and when she called me the next day and told me I tested positive for the flu, I couldn’t believe it.

This is why I have to be very careful about who I’m around, making sure I wash my hands all the time and staying away from people that are sick or getting over being sick. I did have the flu shot but because my immune system is weakened and because of the medications I take comprise it even further, I’m at a high risk for, well, everything.

It’s also going to take me longer to get over this. I’m told I’m going to feel sick and generally crappy for another 2 weeks. It also means I had to stop my chemo meds. I need to give my body a chance to bounce back. That may not sound like a big deal…missing a few pills, but when 21 chemo pills cost $10,950/month and I can’t take 6 of them, that’s a loss of $3,128.58.

If all this wasn’t bad enough, thanks to my craptastic immune system and catching the flu, Adam ended up with it too. At least I was able to get him Tamiflu so he’s managing. But the guilt is there nonetheless.