New Year, New Meds, New Procedure

I’ve had a rough couple of months. I literally checked out socially. Absent from most of my social media account; distant from friends.

I felt lost, empty. I wanted to sleep, be alone.

I wasn’t happy. I wasn’t sad. I wasn’t mad.

I wasn’t anything.

I have been living with Metastatic Breast Cancer for 4 years. Going on 5. It’s been one hell of a road. There is nothing, absolutely nothing to prepare you or your psyche for how to live with a diagnosis like this. That’s probably for the best because who in their right mind would scroll thru the “How To” section, stop on that manual and say, “YES! I’ll take THAT one!” I digress.. It shouldn’t be shocking to anyone, in fact it should be expected, that there would be, at some point some depression with a terminal diagnosis but it’s not always discussed between patient and Oncologist.

Anxiety – yes. Anxiety is talked about and widely discussed. It’s almost comical fodder at times. Xanax or Ativan? I’ve even joked about it. Patients joke because if we don’t we’ll cry.

I finally got in to see my Palliative Care Doc and we talked about how I had been feeling. I told her that I felt I needed some help getting out of the deep pit of nothingness I was drowning in.

She agreed. I love this woman so much. Seriously.

I’ve been on her recommended meds for little over a month. I’m feeling better. I’m getting back to a more normal me (I hate that word ‘normal’ by the way – is anyone really normal?).

Shortly after all of that, I went to my dermatologist for what I thought was a fungus that took up residence in my big toe. (I know – TMI)  It’s not unusual to have infections or have odd things pop up when your immune system is compromised and you’re on chemotherapy meds. My doctor gave a concerned look after examining my “rogue toe” and told me it wasn’t an infection at all and it needed to be biopsied – sooner than later. It looked suspicious for Melanoma.

You have GOT to be kidding me. I just wanted an ointment damn it!

The following week I was back in the office for the biopsy of “rogue toe.” I’m absolutely not exaggerating when I say that this was by far the absolute worst procedure I’ve had EVER. My toe was numbed up with lidocaine (awful) and the entire nail was removed. The nail and samples of the nail bed were sent to pathology.

I won’t go into all of the gory details but I will say that I was not prepared for the horror show that “rogue toe” became when I had to change the bandages for the first time.

Recovery took about two weeks total but I did manage to put a shoe on in about five days. Walking wasn’t fun.

Ten very long days later I finally received the biopsy results. Negative. “Rogue toe” isn’t out to get me after all. Hopefully, the nail will grow back in time for Summer and flip-flops. If not, no big deal.

Now that all of that is out of the way, I’m looking forward to the coming months. The Aid In Dying campaign here in New York is going to be big this year. I’ll be on the road as much as I can to help get us closer to having this bill passed. I’ve also been asked to speak on advocacy this spring so stay tuned for that!

Cancer or not – it’s OK to not be OK. Depression isn’t a dirty word. It’s not something to be ashamed of. It happens to the best of us and if or when it does – ask for help. Depression isn’t something you can wish away or wait until it goes away on it’s own. I’m proof that there is light at the end of the tunnel with the right medication. If you have been experiencing any similar feelings as I have described above, you can read more here and then make an appointment with your doctor to discuss your symptoms. You’ll be glad you did. 

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 Game Changer

I’ve been having a relationship with NED for the past 16 months. Things were good. Real good. Good enough that one of my Dr’s suggested I take a break from the Aromatase Inhibitor to see if the side effects subside AND instead of monthly Xgeva injections they would be every 6 months. Things were very good.

Next step was the annual breast MRI.

That’s when the game started to change.

This past Sunday, I received notification that there was a message for me in my online medical chart. My MRI was also back. The note was from my Oncologist. There was a problem with my left breast. There was significant thickening of the skin and tissue on the outside – closer to my arm. My Dr asked me if I  had noticed any changes to my skin.

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I immediately into the bathroom and started looking. I have dense tissue so it’s not unusual for one breast to be bigger than the other.  But as I’m standing in front of the mirror I realize it’s A LOT bigger. I lifted up my arm and turned to the side to inspect the skin. FUCK. There is definitely something going on. The skin has discoloration and it feels bumpy. I immediately replied to my Dr’s email and told her what I found.

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After some emails back and forth and a few phone calls I had a late afternoon appointment to see my Dr.

We talked. She showed me the MRI and the one from last year and how the left breast had significant changes and many “cysts”.  She examined me.  It wasn’t my imagination. The skin was different.  She ordered a mammogram/ultrasound/biopsy for the left breast. This was bad.

When you’re diagnosed with Metastatic Breast Cancer and you still have your breasts intact most do not favor a bilateral mastectomy.  No one knows if removing the primary tumor will extend life expectancy. It’s the metastasis that are the concern. I had actually asked twice, most recently in November for a bilateral mastectomy but I was shut down. The surgeon didn’t want to upset my ‘apple cart’ (my relationship with NED. No one thinks about the possibility of another primary breast cancer. They should.

Next Thursday I go for the biopsy and Friday I go back to the surgeon. The plan, for now, is if all is well I move forward with the bilateral mastectomy and remove any possibility of being in this position again. If the biopsy is positive for Inflamatory Breast Cancer I will jump into chemo for possibly 4-6 months. Then surgery and radiation after that.

For those that don’t know, Inflamatory Breast Cancer is the rarest breast cancer.  It accounts for only 6% of those with a breast cancer diagnosis. It’s also agressive.

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The standard treatment plan is 4-6 months of chemo, bilateral mastectomy and radiation.

This type of breast cancer is usually diagnosed late and staged at IIIB or IIIC. This is because there is no ‘lump’ to find. I’m hoping that if this is what I’m dealing with that we caught it early because of the regular scans I get.

How this may impact my overall prognosis is anyone’s guess right now. I just have to hope for the best and pray this week goes by fast. The not knowing is awful.  I’ve been mentally preparing for the worst.

If you’ve had a diagnosis of Metastatic Breast Cancer and you still have your breasts, please, PLEASE get regular MRI’S and make sure you really look at your breasts. Look for any changes. If you notice anything, notify your Dr right away. Don’t wait.

Let my story serve as an example that you CAN get another primary breast cancer even after you’re StageIV.

To be continued………..

Meta-WHAT??

I have Breast Cancer. These 4 words become my mantra. I say them all the time. I try them on like they are a new coat I must now wear. I have Breast Cancer and its in my bones. Well, they THINK it’s the same cancer but they won’t be sure until I have biopsies to confirm it all. There is a small chance that I have two different cancers but I know in my gut it’s all the same beast.

September 4th 2013 is my son’s first day of High School – his Freshman year. It’s also the same day I must have my breast biopsy. Little did I know this would be a 5 hour grueling process.

First, I would need a new mammogram and not just a regular painful one. THIS one requires what seems like too many images but I keep my mouth shut and go with it. Then I’m moved to the ultrasound room. This tech is very meticulous. It’s like she’s hunting for gold or something. She snaps a lot of images. Just when I think she’s run out of jelly to use on me she tells me she’s done and I head to an exam room. And I wait…….and wait……and wait.

After 2 hrs a nurse comes in and has me sign the consent paperwork. She tells me that not only will they biopsy the right breast where the PET scan showed the cancer but they want to biopsy the left too. There is tissue that they cannot properly identify and want to know for sure it’s not cancer. Fan-freakin-tastic.  This day just keeps getting better.

After another hour, needles and what sounds like a staple gun and a lot of tears (mine), I’m told to stay still until the bleeding slows. You see, I’m on blood thinners because before my PET scan I had knee surgery that resulted in a blood clot in my calf. (Another great side effect of cancer). I’m given ice packs and wrapped up with an ace bandage and off I go to pick up my son.

The next afternoon I get a call from the radiologist. She confirms that I have Invasive Ductal Carcinoma. I start writing everything she says furiously. I need to be tuned in now. She says I’m Estrogen and Progesterone positive and HER2 negative. She tells me that based on my other tests that she is confident that the cancer in my spine and rib is metastasized breast cancer but that my Oncologist may want me to have the rib biopsied just to be sure.  Meta-WHAT?  I’m not a stupid person, I know I’ve heard that word before and I knew it was bad but I didn’t understand the magnitude.

That night I did something I shouldn’t have done and would continue to do.  I Googled.  I was told not to but as one does when one needs to get more information we Google.  Bad, bad idea.  I had a very bad evening and the next few days after were just as bad.  There is a lot of old information out there and also not enough information out there.  The first search I did was “Breast Cancer metastasized to bone”.  Do you know what Google pops up as an option??  PROGNOSIS.  (I will not click it, I will NOT click it….DAMN IT!)  The first two options to click are from the Komen website. One would think that with a reputation that Susan G. Koman has that the information would be up to date and informative.  Think again.  Komen told me that the average  length of survival for women with metastatic breast cancer is in the range of 2-3 years.  TWO – THREE YEARS????  DAFAQU???  I did not accept that then and I don’t accept it now.

I would show that Komen bitch a thing or two. She would not dictate to me how long I would live. I have things to do. I have a son to finish raising.  I have a husband I just married.  I have stepson’s I was getting to know.  No how, no way.  I had to find a doctor that would treat me for the long-term and keep me alive.  I could not have a doctor that had this same thought process.

The hunt began the next day.