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!)

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.

Solar Powered Florida Adventures

Last week I did something I rarely do but realized I should really do more of – I took a mini vacation. The two days in Albany and the press that followed after took more out of me than I realized. I was exhausted. So, when the opportunity came for me to travel to Florida for a few days I (reluctantly) said yes.

My adventure began with a red-eye flight out of the Niagara Falls airport (yeah, who knew?) via Spirit Airlines to Ft. Lauderdale, FL last Sunday. Apparently, if you pack light enough, something I am NOT known for, you can fly very reasonably on this airline but don’t even THINK of using a legit carry-on bag. Nope. Think small backpack or something half the size of a carry-on suite case and it should also function as your purse ladies or you’ll be paying an extra $50 for luggage. I digress….

I landed in Ft. Lauderdale at 5:30am Monday and it was a glorious 75 degrees!! It already felt like I was going to have a good time. My second wind was waking up and asking about breakfast.

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My early morning breakfast view at The Hilton Doubletree

I should have taken a nap but where was the fun in that? In stead, I decided to take advantage of the glorious weather and get into my (GASP) bathing suit and head straight to the pool for some much-needed Vitamin D. I am extremely deficient after all. It would be very irresponsible of me not to lay out in the sun for a little while, right?? Yes, of course I had sun screen.

After a lovely afternoon of sun and Piña Colada’s, I made plans to see a friend in Key West. The last time I was in Key West was in 2014, which was my first time. It was a difficult trip for me because of all the bone and joint pain. I was also 45 lbs heavier. The heat made moving around that much more painful. I was looking forward to going back not as that person and creating some new memories.

Bright and early on Tuesday, I began the trip to Key West. The drive thru the different Key’s is so nice. About 4 hours later, I rolled into New town Key West and checked into the hotel. I had a bit of time before dinner and meeting up with Monique so that meant I had to check out the pool. It was a bit warmer at 85 degrees but still absolutely lovely. My brain can’t even comprehend leaving anytime soon and returning to cold weather.

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I met Monique for dinner in Old Town Key West at a lovely restaurant where she works part-time. It’s on the water where the cruise ships dock. There is a large crowd that gather for cocktails at the outside bar to watch the sunset. The food was amazing and the dessert was from heaven. Yes, I could have had the Key Lime Pie but when Caramel Crème Brûlée is on the menu you order the Caramel Crème Brûlée. Always. Thems the rules.

We had a LOT of laughs and a crazy adventure after dinner that involved visiting a local dive bar off the beaten path that, if I had to guess, is probably only known to the locals. Probably for good reason. The rest of the night will, as they say, stay in Key West.

I wrapped up my stay with lunch with Monique at the Blue Macaw for Conch Fritters and then a quick picture of the Southernmost Point. A landmark that I didn’t make it to last time I was in Key West because of the extreme heat.

I also have to add that if ever in the area, at Mile Marker 15, you simply MUST stop in at Baby’s Coffee. They roast their own beans and have the most outstanding blends of coffee. There are also sandwiches and snacks if you’re hungry. If you’re a coffee connoisseur but not going to be in Key West, you can order their coffee online.

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Wednesday night, I very begrudgingly made my way back to the airport to begin my way back to the cold tundra of NY. I was already beginning to become sad knowing that I was leaving the lovely sun and warm weather but Adam and my pup Bella were waiting for me to come home. Oh, they are SO lucky I love them so much.

I barely remember getting back home Thursday morning. It was sometime around 3am. I just know Bella came our of Adam’s room to great me and jumped into my bed with me. When it was time to wake Adam up 4 hours later, this is how I woke up…..

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This trip taught me something important. If I’m going to keep doing the things that are important to me. If I’m going to keep trying to make a difference in the world, I need to remember to take time for me too. Not just Dr appointments. I need to remember to take breaks and recharge. I can’t run myself down or I won’t be good to anyone.

It was great to get away. I’m so lucky that I was able to. I had a fantastic time and I am absolutely counting the days until I can do it all over again but God help me, coming home to that furry face is the sweetest thing ever.

On the Road Again

 

Today I’m making my favorite trip again. *eyeroll*  I’m headed down to Sloan-Kettering for another fast and dirty trip for a PET/CT.

The last time I updated regarding my health, I was going to see a GI Oncologist at Sloan on September 28th to see if she could unravel the mystery that is me. I had only planned on being there over night so I booked the train for Tuesday, September 27th and invited my Mom to come along! In past 3 yrs she had never come with me to NYC so I thought this would be a good time for some girl time. Oh, life….it has such a way of throwing irony at you at the worst times.

Our trip to Manhattan was pretty typical. We were delayed. I can’t even get mad any more but I do get a chuckle when I hear the people around me freaking out about it. We ended up being about 3 hrs late getting in and we were pretty tired so, my grand plans of doing some sightseeing were squashed.

The day of my appointment with the GI Doc, we got there early – 9am. I always get to appointments early in the hopes that I can get in early. Nope. We waited almost 2 hrs before I was called back. It was another 90 minutes before I actually saw my Doc. I saw her nurse who took my vitals and I saw her Assistant who did a very intense intake. Then I waited some more. I was getting nervous because we had a train to catch at 3:40pm.

At almost 1pm, Dr. Ludwig walked in. I loved her almost immediately. She listened. She heard me. She validated me. She promised me she would get to the bottom of what was going on. And then she freaked me out with what she said next: “You need to change your plans because you’re not leaving today. I need to get you into imaging right away. Sit tight I’m going to make some calls right now and get some scans scheduled.”  *Gulp*

Then things seemed to go pretty fast. I had to make 2 calls immediately – one to the hotel and the other to Amtrak. Then a nurse came out – “Dr. Ludwig wants you to do a Colonoscopy and Endoscopy on Friday the 30th” Yeah, no. I had to give a speech at Adam’s school that day. I would have to come back. So, we scheduled that for the following Monday, October 3rd. (Sheesh!)

At 2pm I finally had my appointment time for an abdominal x-ray and a Lumbar/Thoracic Spine MRI. Two different locations. 5pm and 7pm. We could finally leave, go get lunch and relax before we had to go back out make our way to my appointments.

The Imaging office for the MRI was at an affiliate location connected with Sloan and in a very upscale part of Manhattan. While I was filling out the paperwork. My Mom started poking my arm and whispered loudly – “LOOK!”  I looked up and standing at the counter checking in was – and I’m not even kidding – Martha (freaking) Stewart. In all the times I have been to NYC this was the first time I had ever seen a celebrity let alone sat within 2 feet of one. My Mom was literally seconds away from talking to her when someone came out and whisked her away for her x-ray. And just like that she was gone.

While I was waiting for the MRI, I received a call from Dr. Ludwig’s office. The abdominal x-ray I had an hour earlier was OK and I was officially scheduled for the Colonoscopy/Endoscopy for the following Monday. (Joy!)

To make a long story….well, it’s too late to make it short so I’ll just jump to the why I’m going to Sloan today. So, the MRI was negative for any spinal compression or metastasis that would cause my spontaneous GI episodes. The Abdominal x-ray was negative for any obstructions. The Colonoscopy/Endoscopy was OK. The biopsies that were done – there were 4, including a gastric polyp, were negative. She also tested me for C.Diff, H.Pylori, and Colitis. It was noted that my stomach is very inflamed and angry. All of this is GREAT NEWS. The best news. One tiny little problem….I’m still losing weight, I’m still not able to eat all the time, I’m still battling nausea and I’m having GI issues and I just don’t feel good.

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There was a question as to when I would have my next set of scans. Stick to the 3 month plan or wait until February which would be 6 months. I was almost inclined to wait, however when Dr Modi, my Oncologist at Sloan heard that I’m not better and I’m down another 6lbs her office called me and said she wanted me to have the PET now.

I usually have the results the same day – one of the awesome things I love about Sloan – but my scan is late (3:45pm) and it’s a Friday so I’m not anticipating hearing anything until Monday.

*Fingers Crossed* Hoping to keep my ‘unremarkable’ PET scan streak going a little bit longer.

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Before You Post That Meme….

​We’ve barely had time to dip our collective toe into September and the just like the Christmas decorations we see way ahead of schedule, it seems the Pink ooze that is October has already begun.

To be perfectly honest, I feel like asking for my high blood pressure meds back (that I finally got off of) until November arrives.

Breast cancer is the ONLY disease that is sexualized and trivialize. It’s the ONLY illness that is treated like a sorority, where you’re literally welcomed in by others. Do men go around wearing a jock on the outside of their clothes in the name of ‘awareness’ for testicular cancer? Do they wear a strap on to to bring awareness to the CAUSE of penile cancer? Nope…because it’s ridiculous. 

So, why sexualize cancer of the breast? What’s the point of a cryptic Facebook post, really? How is a selfie going to help anyone in actual need? What is going without a bra truly going to do for anyone? And who is going to know you’re doing it unless you either go topless or wear a thin white t-shirt to show your bare breasts – which again is only sexualizing a deadly disease….a disease that kills 113 women in the U.S. every day. A disease that I will die from because we still don’t have a cure for.

Some of these ‘fun and games’ in the name of awareness even hijack the one and only day dedicated to the Breast Cancer that kills – Metastatic Breast Cancer Awareness Day  (October 13th). You’d think that out of 31 days MBC would get more than one day of recognition. After all 40,450 Men and Women will die in 2016 because of Metastatic Breast Cancer. Don’t they deserve more than one day?

I’ve been accused of being angry and insensitive because isn’t any awareness good for the cause? I make no apologies for my strong opinions about my emphatic objections to the way Breast Cancer has been reduced to a cute, sexy marketing campaign and not the serious and potentially deadly disease that kills so many YOUNG women as well as men every day/every year. 

If raising awareness is important to you personally, it would seem to me that actually doing something that would have a direct impact on folks with Breast Cancer or helping to educate those that could benefit from it would be the better option than just choosing to do something that you could do any other day of the week.

The day I stop being angry and pissed off about how the public views and treats Breast Cancer will be the day the landscape changes or more realistically, the day I die from MetastaticBreast Cancer.

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…..

Viewpoint with Ken Rosato

 

Just a quick follow up post.

The interview I did with Compassion & Choices New York a few weeks ago, aired last night. I wanted to share it here for those of you that may not regularly visit Facebook or Twitter.

I’m very pleased with how this turned out. Sometimes after editing, an interview can look very different than how it really happened. Not so this time. There was literally no editing done (that I could see anyway).

I’m very appreciative of the way Ken Rosato handled the interview and questions. He was every bit the professional you’d expect while also very understanding and compassionate about the subject matter.

Ken, if I’m lucky enough to have you read this: Thank you SO much for giving Medical Aid In Dying a platform on Viewpoint. You’ll never know how much it meant to me.

Our segment is the second one once you click on the link.

http://abc7ny.com/society/new-york-viewpoint/32277/