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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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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How Loud Do I Need to Get Before Someone Hears Me??

The last month has been very frustrating.
It started out with me doing something to my side/rib area while making my bed. I felt a ‘snap’ and it immediately brought me to my knees. I honestly didn’t know if it was a pulled muscle or worse. I had plans to have lunch with my Mom and after she insisted I go to Immediate Care and get checked out. I was having a difficult time breathing. Long story short the verdict was I fractured the rib I had previously radiated. I was a disc. This was on a Thursday.

I managed to get thru the weekend with some breakthrough morphine. Tuesday morning something changed. I woke up in even more pain and was unable to take a full breath. Around 3am Wednesday morning I woke up feeling as if I couldn’t breathe. I was scared. I finally woke up my husband and he took me to the ER. One thing about having Stage IV cancer is that you get taken right in when you go to the ER. I told the intake nurse I had fractured my rib and now I couldn’t breathe and was in horrible pain. My BP was 159/105.  I had an EKG, more X-Rays and a CT w/contrast. The CT was horrible. I was sure I would pass out before it was over. I could NOT breathe. When I finally got back to my triage room, still fighting to breathe, I pushed my call button for help. The nurses couldn’t care less. There was no sense of urgency, they spoke to me in a condescending tone and asked me what I wanted them to do. Um, gee, maybe HELP ME?!?  Finally, the Dr came in and said the tests showed no clot in my lungs and I was fine. FINE?!?  I was NOT FINE. What was going on? I was truly confused.

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Thursday I had a regularly scheduled appointment with my GP. I went thru my whole story about the rib and the ER. She goes thru my tests, looks at the images and then says “Who told you fractured your rib?” I told her Immediate Care and I gave her the disc. She said…”Well, according to what you had done at the ER, there’s no fracture “. Then it hit me: the reason I was treated the way I was is because they thought I wanted drugs. I was pissed. I even told them I didn’t want narcotics because that wouldn’t fix the problem!  The good news was my cholesterol went down 16 points.

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Still living with the pain, I begin to feel a rattling in my right lung. I have no fever, no cough. The following Tuesday I see my Palliative Care doctor. Again, I tell her what’s been going on with my not really broken rib and horrible pain. She takes a listen to my chest and tells me I definitely have fluid building. She tries contacting my Oncologist. I told her it wasn’t a big deal, I was seeing her in 2 days.

Thursday, I see my local Oncologist and get my Xgeva injection. My local Oncologist tells me she believes I DID fracture my rib. Now I’m really confused. She examines me and checks my oxygen saturation a few ways. Laying down, sitting up and walking around the office. Laying down and walking around causes my levels to drop below 90. She makes a few calls and get a me scheduled for an MRI of my chest wall for later that day. She also suggests that I cancel my trip to Memorial Sloan Kettering. She doesn’t feel I should be traveling. When your Oncologist tells you not to travel, your brain begins to think about all the ‘worst case scenarios’. Chest wall mets, lung mets….cancer progressing.

I knew this would happen eventually. Just because I’m NED doesn’t mean the cancer is gone. Its still there. Its just too small to be detected. I was just hoping it wouldn’t happen until after my son graduates from High School.

The MRI was 60 minutes. There was no way I could have gotten thru it without Xanax. God bless Xanax.

With the MRI done we decided to make the trip to Kettering anyway. I wanted to update my Dr and I had a bunch of films to bring her too. For the 4th time I tell my rib/ER/lung fluid story. Basically, my Dr tells me there are only 2 scenarios. Fractured rib is the problem and pain is causing shallow breathing that’s causing fluid OR Cancer progression and we tweak my treatment. She discusses how there are still hormone treatments to try and other meds to add to what I’m currently talking. We dont necessarily need to jump to infusion chemo.  That alone makes me feel much better. So, the plan is if it is cancer I come back in a week for a biopsy and get a new treatment plan.

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At 5pm my phone rings. Its my local Oncologist from home. No new lesions, no progression, small pleural effusion on right side. Did I hear that right? No cancer?? No cancer.

I was so sure. I was positive. Seems like so many of my friends have been getting bad news or have died in recent weeks it just made sense to me that it was my turn. How is it not? I was numb. I should be happy. I should be jumping up and down but I just sat on my hotel bed and tried to process it. Its difficult for me to trust these tests. I’ve had so many that were read wrong when there was a problem, not to mention the rib – broken, not broken. How do I know this test is really right? My biggest fear is that the cancer is progressing but everyone is missing it. The same way I had a mammogram and my cancer was missed. The same way I had a lumbar/thoracic MRI and my spinal lesion was missed. My fear isn’t irrational. Its happened before.

I guess I just have to wait and see if the fluid keeps collecting. Wait and see if the pain eventually subsides. Until then I’ll just keep going on and try not to think about it.

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