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.

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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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 affects 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………..

The Meaning of it All and Other Questions

My heart is so heavy right now. Several women I know, that I have corresponded with are having such a rough time and there isn’t anything I can do about it.

Two are struggling with the treatments they are enduring. They are not able to walk or do simple day to day things we take for granted. Its difficult to read updates because normally these women are so vibrant and active.

Most of the time, the treatments that are meant to help actually make things worse for a period of time before they get better. Its not like taking an antibiotic for a sore throat and 24 hrs later you feel relief.

Another woman has been moved to hospice and the end for her is imminent. She has two young children that want their Mom with them but instead have to say goodbye.

Its just all so overwhelming. We form special bonds with women in similar circumstances over Social Media. We give advice, offer support, joke around, discuss treatments, side effects. Sometimes we are lucky and get to meet face to face. All the while, knowing one day it might be us that needs the prayers. Its just not fucking fair!

Some people think I should be thanking God it’s not me, but I can’t. I can’t do that because I don’t want ANYONE to be going thru this and one day, this WILL be me, and I can’t hide from it. I can’t hide when I have reminders like this week when I woke up having trouble breathing and in so much pain. It was very difficult to wake my husband and let him know I needed help. I had such feeling of guilt. I felt guilty for not ‘sucking it up’ and waiting until morning. I felt guilty for waking him up knowing how hard he works during the day. I knew by waking him up it was guaranteeing a trip to the Emergency Room.

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Why is this my life now? Why is this any of our lives? Why are some of us being robbed of just living our lives? Being robbed of watching our kids grow up? These are wonderful people that have things to offer. It just isn’t fair. None of it.

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On Monday, a large group of us (women living with Metastatic Breast Cancer and others) took over Twitter and Facebook in order to give a face and a voice to metastatic breast cancer. The purpose was to trend certain hashtags and educate people of the breast cancer truths many are never told. The Twitter goal wasn’t realized as it had been intended to but we did on Facebook (at least I think we did). Every time I posted or sent a tweet I did so with these women in mind. In fact some even included their picture. Bottom line, on Monday we made an impact and let our presence known.

I don’t have the answers to my questions and I probably never will but one thing is true: We will never be forgotten. None of the women that have passed from this disease will be forgotten and those left to scream and shout about MBC awareness won’t be forgotten either when its our time.
Even though this disease is a son of a bitch twatgoblin, I couldn’t be in a better group of company. I love these women and I’m proud to stand beside them.