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 suspicios 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

I Interrupt This Blog….

I Interrupt this blog to bring the most amazingly wonderful Proud Momma news!!! 

Buckle up…an entire post sans Cancer!! 

Adam has been accepted to the University of Rochester’s class of 2021 AND awarded a FULL SCHOLARSHIP!!

Yesterday morning, right before Adam left for school, he recieved notification from U of R to check his portal for the financial aid letter. He had found out last week he was accepted but he was waiting to receive the financial aid package. 

When we looked at the letter, me peering over his shoulder in true helicopter form, neither of us said a word. We just read it and re-read it. I asked him if this was correct….they didn’t make a mistake, right? No…we were reading it correctly. 

Words escape me. Adam has worked SO hard for this. This year especially. Senior year is supposed to be fun but Adam has what I would say is his most rigorous course load (4 AP/Honors classes), he enrolled in a two night a week EMT certification class and he works part-time at a Dr. Office as a File Clerk. The boy is BUSY.

This scholarship is such a gift. Adam will be able to enter Medical School with out the added burden of undergrad student loans. 

We meet with representatives from the University of Rochester on Friday to confirm Adam’s acceptance and lock in his spot before he leaves for Italy! 

Yes! Eight days in Italy with his High School! Adam will actually be at the Vatican on Easter Sunday. I know he’s going to have the best time. 

So, this post is for you Son. I am so, so proud of what you have accomplished so far and I know that there are so many great things in your future. You have the ability to achieve whatever goals you set for yourself and I am confident that you will be successful in the Medical specialty you choose for yourself.

I love you Adam. You will always be my Adam Banana, My Lil Pup no matter how old or grown-up you get. You’ll always be my baby boy.

A Funny Thing Happened This Week

 

Actually, not really. It was a little bit scary but I wanted to lead with a positive spin so….

Wednesday I had my monthly Oncologist/Treatment appointments. I see my Doc first, go over what’s been happening the past month, discuss any new symptoms (if any) and what’s the plan for the month ahead. Then I head to the infusion room to get my 3 shots – 2 Faslodex with the ginormous needles in my backside and the Xgeva ‘bee sting’ in my arm.

We talked about the crappy flu I had, the nagging chest pain that won’t seem to go away and the way it feels worse with any kind of physical activity. I’m also feeling a bit more tired lately. She double checked the chest x-ray I had this past Monday (to rule out pneumonia) but based on my symptoms and the fact that the Ibrance I take for the Cancer does come with a risk for developing Pulmonary Embolism, she scheduled a CT Angio to rule out a small clot in my lung. She also added an additional CT w/contrast Abdomen/Pelvis because I have some sensitive spots in my ribs that we have been watching. Since I’ll be in the tube anyway we might as well check it all out and see what, if anything is going on.

(Here’s the “funny” part I promised at the beginning)

After I had my awesomely painful shots, I made my way to the desk to check out and schedule my scans. While standing there and waiting for the tech to figure things out, the whole room seemed to turn to liquid. I began to feel REALLY weak, REALLY fast. It must have shown on my face because the tech asked me if I felt OK. I told her I felt “funny” and I grabbed the counter. The next thing I knew I was in a wheel-chair and people were running. They were running to ME. Someone was taking my blood pressure (it was 159/112), someone else was checking my oxygen level and someone else was giving me juice. I couldn’t speak. Tears were streaming down my face. Next thing I knew I was being whisked into the infusion room where I had my shots. I was being hooked up to oxygen.

My Doc came in to check on me and told me that I was scheduled for my scan in a few hours. She stayed until my numbers were back to normal. I’m so thankful they didn’t call for an ambulance. I definitely don’t want to make ambulance rides a monthly thing and definitely don’t want to be anywhere near an Emergency Room again.

A few hours later, I arrived at the hospital for the scan. I was given a huge plastic bottle of what appeared to be water to drink but tasted like what I imagine liquefied tinfoil to taste like. Then the IV was placed and I continued to drink.The whole process took about 3 hours. I was pretty exhausted when it was over.

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The good news: I do not have a Pulmonary Embolism and ribs are OK. Also, I do NOT have Metastatic disease in my liver. Wait…WHAT?? You see, when I read my report last night, line #4 literally said I had “known Metastatic hepatic lesions”. I might have freaked out a tiny bit. After a quick conversation with my Oncologist this morning, she confirmed I did not and there was a second report that had not been released to my online chart that explained the radiologist had viewed some benign liver cysts that I have had all along. WHEW!! This is why we should NOT read our scan reports – at night – alone – before discussing with our doctors. (I should write this down and stick it on my mirror so I see it every day and don’t forget that I said it)

The not so awesome news: the spot in my lungs that was ‘too small to characterize’ on my last PET Scan is now a 3mm lesion in my upper left lung. It’s very small and if it stays that small it still may not show up on the next PET Scan. But as we all know, this finding in someone like me, with Metastatic disease, most likely means that I could be in the beginning phases of progression to an organ – my lungs. If it does turn out to be progression, this will mean another treatment change. To what? I don’t know. I do know, I have very few if any non IV-chemo options left.

In the meantime, my GP has prescribed an inhaler for me to use before any physical activity to help with my chest pain and breathing. She is thinking it’s residual bronchial inflammation from the flu and hoping this will help until I’m 100% back to normal (what ever ‘normal’ means, right??).

So, until my next Scan at Sloan in May, I will be getting Adam ready for his trip to Italy with his High School, which happens in April – SEVENTEEN DAYS to be exact. That should keep my mind occupied enough so I won’t give much thought to my lungs or scans or unhappy crap. HAHAHAHA – who am I kidding? That’s what bedtime is for, am I right??

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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.

Patients at Pluta Have a Guardian Angel

It’s very expensive to have cancer. There are scans, monthly labs, Doctor appointments, drugs to fight the cancer and more drugs to help with side effects. It can be very overwhelming and if you’re like most people, it can be financially devastating.

There are some organizations, such as The Pink Fund, that are available to early stage breast cancer patients that offer financial help with non-medical related bills (rent, utilities, etc.). There are very few organizations that offer immediate financial help to Metastatic Breast Cancer patients.

This is often a big problem to women that need child care in order to go to appointments or having to choose between groceries, rent or chemo. I mean, seriously, the basic living necessities will always win, am I right?

Enter Rebecca Timlin-Scalera, founder of The Cancer Couch. In addition to raising money for the treatment of Metastatic Breast Cancer, Rebecca has begun establishing “Angel Funds” in the communities of some of the women that have been fierce advocates and educators of Metastatic Breast Cancer and who have also supported The Cancer Couch Foundation.

A portion of the funds raised from fundraising events in their respective communities will go to the local Metastatic fund.

The local fund is administered by the honoree’s local Cancer Center or Hospital. Metastatic men and women can inquire about receiving immediate help to cover rent, groceries, a utility bill, child care or transportation to a doctor appointment. The money does not need to be paid back. Everyone needs help from time to time. It’s OK to ask for help and with this fund now Metastatic Breast Cancer patients can get financial assistance.

I am very proud and humbled to announce that there is now The Susan Rahn Fund for Metastatic Breast Cancer Patients at The Pluta Cancer Center in Rochester, NY.

On October 28th, Rebecca and I met with Jamie Bishop, Executive Director and Judy Zeeman-Golden, Oncology Social Worker of The Pluta Cancer Center. Pluta, is where I receive my monthly treatment. Rebecca presented Jamie and Judy with a check for $2,000 to establish the this new fund.

Every fundraising event that is held in Rochester for The Cancer Couch Foundation, 10% will go directly into the Susan Rahn Fund at Pluta. Additionally, donations may be made directly to that fund via The Cancer Couch website using this link. Just scroll down until you see my name and picture and click the donation button.

The Susan Rahn Fund

As the holiday season approaches, I ask that you consider making a donation to this fund (if you live in the Rochester or surrounding area), or any of the funds listed on The Cancer Couch site, so that those seeking treatment for Metastatic Breast Cancer can have one less thing to worry. What better way to give thanks for your good health and spread some holiday cheer in the process?