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.
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??
Hi Susan! I can’t find your email anywhere on your blog so I will just post mine here:
Let me know when you’re free to meet up and we will make it happen!!!
I’m sorry that you are going through this, Susan. How you manage to keep it together so well is beyond me, but you do somehow and I am in total awe. It sounds hollow, I know, but please let us know what we can do for you. Prayers are a given, everyday. Not just me. I had 2 meetings this week, WCOP and the MAG. EVERYONE inquired about you and you are on multiple prayer lists. We’re with you! Love, MOM (&DAD) p.s. My Brother, Joe, asked about you today too. He was genuinely shocked when he looked at his birthday cake & learned that he is 65, or will be in a week, and didn’t realize he has been in the nursing home for nearly 4 years, but he remembered you and asked how you are doing? His mind is a mystery.
My name is Amy Schnitzler. I’m 27 years old with metastatic disease (to the lungs), I saw you on the news a while ago discussing the death with dignity act and I want you to know that even though I don’t know you personally, I am inspired by your advocacy and all that you do for those of us with metastatic disease. You are a FORCE, and I am so grateful for all that you do. Your voice has helped me to discover my own, and I am so thankful to you. Sending you love, thoughts and prayers.
Amy, thank you so much for the kind words. I can say the same thing about you too! I saw your story on NBC news regarding exercise during treatment. You give others such pause for not giving in to the some of the pain when we are able to move and maybe feel better. It’s difficult when you feel crappy but seeing you will definitely inspire others. That’s all we can do as patients is try to find our “silver linings” when we can and use our voice for others. Would love to meet up sometime. Email me if you’d like. Hope you’re doing well. Love and good juju…Susan
😊thank you so much! I would absolutely love to meet up! Sending love and good ju ju right back atchya! 💕
I love reading your writing. You really are gifted. I wish it was all just fiction, not really happening to you.
I’m humbled by such an sweet compliment, thank you so much. I wish it was fiction too but instead of a horror story I choose to turn it into a half-assed comedy when I can. 🙂 xox
I also take Xgeva (I get mine in my stomach) and 2 shots of Faslodex monthly. My next scans are in April. I have 9 months of no growth of my bone mets right now and I’m reveling in it. But I’m also terrified. I’ll be thinking of you. Thank you for this. It helps.
You are the second person that’s told me they get their Xgeva in their stomach. I can’t. Too many bad memories of Lovenox belly injections when I had a blood clot. Sending you good juju for your upcoming scan. I hope you continue to get good news. Xoxo
Nights are always the worse! I wrote a blog piece about it for CancerRoadTrip, but it’s so dark, I don’t think I’ll publish it! Anyway, I’m always up at 3am! (PT) Tweet if you want to chat!
You should absolutely publish it. Keep it real – always. You may regret telling me to tweet at you at 3am!! 🙂
Such a tough road….I can wish you painfree days,Susan. And thank you for sharing your journey with us.
Thank you. I appreciate your kind words and your follow. xoxo