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┬ámetastasis. 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

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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

The Numbers are Not in My Favor

At my last update there was concern over my rising tumor marker: CA 27.29. I had my labs done on Thursday and the decision was made to schedule a PET/CT for August 2nd. The rising numbers coupled with my continued weight loss (I’m averaging about 10lbs a month) and my over all feeling like crud has my team feeling there is enough concern to warrant the scan. 

I’ve been thinking all morning. I’m working in a visit to Sloan Kettering on August 5th to see my Primary Oncologist while Adam and I tour NYU. I’m going to see if the PET can be done earlier that same morning before my Dr appointment. I haven’t been scanned there in a while and due to the mixed reading I recently had that involved the lymph nodes, I feel it would be best if Sloan could do it. Hopefully, all the stars align and it works out. *fingers crossed*

On a lighter note….I recently returned from a quick advocacy trip to NYC. 

Compassion & Choices asked if I would share my story and why I support Medical Aid In Dying with WABC7’s Ken Rosato for his Weekend Show – Viewpoint. Of course I said yes! It’s important to keep this important topic at the forefront and keep the conversations going. It’s the only way to gain traction and enlighten people about why terminally ill people, like myself, want this legislation. 

The interview took place at the WABC7 studio in Manhattan. The same studio that Kelly Ripa and Rachel Ray call home! In fact, Kelly Ripa was live on the air when we arrived.

Corinne Carey, the Director of the NY Chapter of Compassion & Choices and I sat with Ken Rosato for 10 minutes. Corinne spoke about the facts and statistics of the other states that already have these laws in effect. I shared a shorter version of my story and why I’m in support. I also stressed to Ken that I am in NO way suicidal nor do I WANT to die. I want to live. God, do I want to live. That’s so important for me to have people that don’t know me understand. I so hope I made that clear. I think I did.

The segment, I’ve been told will air on July 27th and again in October. I’ll be sure to post links on my Facebook Blog Page and Twitter.

At least I didn’t look as awful as I felt on the day of the interview. ­čśë

Nope, Not Worried At All

Last I updated, I was headed for a biopsy of my lymph nodes under my left arm and a biopsy of my ribs on the right side where I have had a large hard visible growth that is quite painful.

Both procedures were done on the same day and I was home by 2pm on June 2nd.
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The rib biopsy was by far the most painful. More painful than I remember it being. The “twilight” meds didn’t work and I was awake for the whole thing causing them to have to give me 3 doses of Fentynal because I could feel everything. My tolerance to pain medications is quite ridiculous. But boy did I sleep once I got home!

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I finally met with my Oncologist this past Friday.

The rib biopsy showed that I have a large collection of scar tissue from radiation therapy of my 9th rib from 2yrs ago. Per the Radiation Oncologist, side effects from radiation can continue long after radiation has ended.  There is no active cancer.

The lymph biopsy showed only lymph cells and no metastasis. This was very surprising but also a relief. Because this was something that showed up on the PET scan, I was pretty confident that the biopsy would be positive for cancer. My Oncologist’s exact words to me were: “We are cautiously optimistic but we will be keeping a close eye on this area going forward” Um…Ok. No so reassuring but not much I can do.

I’m still losing weight. Down another 5 lbs and to deal with that we are adjusting the Ibrance down from 125mgs to 100mgs. This should have no effect on the drugs fighting the cancer but more on the side effects of nausea and lack of appetite. 

Today, I received my tumor marker results. The one we watch closely is CA 27.29. Anything under 40 is considered normal. My number has been slightly over 40 for 3 months. This is significant because my number has been under 40 for over a year. Today, it jumped to 51.
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I know some will say that 51 is still pretty low and it is. I know some people that have their numbers jump up 2 or 3 HUNDRED points. But everyone is different and everyone’s numbers are significant to themselves. The fact that mine haven’t ever gone up like this and you add on top of that a suspicious PET (that for now is OK but we’re going to watch). I’m not feeling very good about this at all.

I said this back in May in an interview in Albany and I’ll say it again: “My prognosis is only as good as my next PET Scan”.  I’m very worried about my next PET Scan. A lot can go wrong in 12 months and I’ll be damned if I allow any of it to happen.

I have a graduation to go to.
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Happy Birthday! Your Treatment Failed.

It’s the nature of the beast. The way Metastatic disease works. We begin the best treatment option and hope it works for a long time. If you’re lucky, it does. Sometimes, like this time, your luck runs out sooner than you hoped it would.

I began Faslodex in January of this year and Ibrance in February once Insurance approved it. That’s the shortest run I’ve had because of progression.

The news wasn’t as ‘bad’ as it could have been. (That’s a lie…it’s all shitty when there is cancer showing in a PET scan). The PET scan showed cancer in the lymph nodes under my left arm near my breast as well as that painful spot in my ribs has grown bigger.

There are a lot of unknowns right now. I’ve never had cancer in my nodes before. Not even when I was first diagnosed and this is the “non-cancer” breast. This could be a totally new primary breast cancer with a new pathology. Also, the cancer in the ribs could be different now too.

So…..here is the plan of action:

Next week I will be having a Mammogram/Ultrasound and Sentinel Node Biopsy.  Then I will be having a CT guided biopsy of my ribs (hopefully under some kind of sedation).

Once all the pathology comes back we can figure out what treatment will be best to keep this from getting out of hand. It is of utmost importance to keep this from reaching my organs for as long as possible.

I absolutely MUST be at my Son’s High School graduation next June. I will not accept any other alternative. If that means I get a little more aggressive with this treatment then that’s what I do. Any Doctor not on the same page as I am with this won’t be treating me.

Now, I will take some time for me. I will release the emotions I’ve been holding in all morning and have a good cry so that when Adam comes home he won’t see how scared and sad I am. He deserves to have the appearance of a ‘normal’ Mom for as long as I can give that to him.

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The Murky Waters Have Become Clear

It’s been a very rocky month.

Since my second breast surgery and learning of progresion in my ribs, I’ve started a new treatment of Ibrance/Faslodex and had another PET Scan.

Going into the PET Scan, we were expecting to find further progression in my lung and liver. I was very relieved to learn that was not the case. However, there was ‘intense uptake’ in my tonsils and in two quadrants of lymph nodes in my neck. I needed to know if this was the beginning of something else so I saw my ENT. I was again relieved to learn that, for now, I’m OK. Having my tonsils out should be considered but as long as it’s not an immediate concern they are staying put.

While all this uncertainty was playing out I had a lot of time to think of how I see my future playing out and how I want things to be. It renewed a belief that I’ve had since my diagnosis and that is I don’t wish to have this disease consume me when my treatment options end. I want to die on my terms and when I determine its time.

Last year I was interviewed by local media about the Death with Dignity when New York State law makers announced they wanted to introduce legislation. It was after that interview that i contacted Compassion & Choices and worked with them on an Opt ed piece that was published in my local newspaper November 2015.

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This past Wednesday I was interviewed again when Senator Amy Paulin announced she was joining the cause for Death with Dignity legislation after a family member suffered thru a cancer death.

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I feel like this is a renewed direction I need to go in. Not only for me but for those that also want to have this same choice. And that’s what this is. It’s a choice. It’s not mandatory. Its not something to get talked into. It’s an option. It’s something you can decide NOT to do too. 

Death with Dignity is also NOT sucicide. It’s very important to me to change the stigma. Death with Dignity is choosing to die on your own terms when you don’t have the option to live. Suicide is taking your life when you are otherwise healthy and have more of a mental/emotional issue.

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Some people that oppose this option do so because of religious reasons or because they fear that the person will somehow be taken advantage of by others. In other words, they’d be ‘talked into’ it because it’s the ‘easy’ option for the caregivers.

Growing up Catholic, I’m very confident and comfortable knowing that MY God doesn’t want me to suffer and more importantly wouldn’t want my Son to watch me suffer and die. MY God wants me to leave my Son with all the best memories I can and non of them include me laying in a bed wasting away or struggling to breathe.

It’s OK if this isn’t right for you. It’s OK if you prefer the biblical, regular way to die. That’s why this is a choice. MY choice. And I am going to fight for this the best I can so this is an option I can choose from.

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Pathology Report and Decisions

Almost 2 weeks after my bilateral  lumpectomy the surgeon FINALLY called me.

The left side that had hinkey looking cysts/tissue was not cancerous but definitely needed to come out. She said it was more lobular than ductal.

The right side, the breast that betrayed me from the begining had 2 tumors. One just under the nipple that was now dead. The other that was found on the MRI, that they couldn’t biopsy was 2cm and ACTIVE cancer. Unfortunately, she didn’t get clear enough margins and it looks like I’m headed back to surgery.

I asked about a mastectomy even if just the right side since we are going back but she still isn’t a fan. She would prefer I be a few more years out.

Also, nothing is going to happen until I have my PET/CT on the 30th.  I have what could be (at least it feels like and acts like) a new met on my 5th or 6th rib. Whatever this is, it’s a hard mass that is painful. It feels like it wants to bust out of my skin and makes it difficult to use my right arm.

So, plan right now is PET/CT and decide if I’m still a surgical candidate and whether or not I also have radiation on the right breast. I will also need to decide what new Aromatase Inhibitor I go on now. If I do have a new spot (or spots) it may be a game changer. I want to keep chemo as far away from me as possible for as long as possible.

The moral of this blog is this:  If you feel that something is best for YOU, and everyone disagrees with you, DON’T GIVE UP.  It’s your body. You know it better than anyone else. BE YOUR OWN ADVOCATE.  Keep pushing and asking questions.

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The surgeon validated me by saying I was absolutely correct in having this surgery because the exemestane didn’t kill it and the PET wasn’t picking it up. Everyone was telling me I was NED when really, I wasn’t.

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