Cancer. It’s not a word that you want in your life. You hope “cancer” will stay as a peripheral experience: others get cancer, but never you or your closest loved ones.
And then one day there is a doctor sitting in front of you saying that dreaded word.
Recently it happened to me. I now have a cancer story. It’s only beginning. I’m praying for a happy ending.
The last time I blogged was on the dawn of my scoliosis surgery. We knew that this year was going to be a big year for me healthwise. We had no idea how big. There’s been a few curveballs.
So here is the story. I had the back surgery. It hurt. A lot.
I spent four days in intensive care before moving onto the ward. I spent another week in the ward. When I was in ICU they took an x-ray of my chest to check for pneumonia. It’s a routine thing. I didn’t feel like I had anything wrong, so I wasn’t worried. I was just excited to see what my new back looked like! It was impressive. The nurse glanced over at the X-ray, froze, then let out an awed, “Woah. That is awesome!” It always amuses me what turns on medical people. He then send with great reverence, “You are totally Optimus Spine now.” Thanks nurse! I am! I totally own that. I’m proud of my straight spine, it hasn’t been easy to get and the large scar down my back now is a badge of honour.
While I was celebrating my straight back that could be seen in the x-ray, I didn’t notice a cloud looming. The cloud was in the X-ray. A cloudy white mass on my lungs. Once I was on the ward, I learned about it from a lung specialist. He came to visit me and told me what they had seen on the X-ray that my untrained eye had not noticed. They thought it was a collapsed lung, which sounded scary but with his explanation I was quickly comforted. It didn’t sound like it would make a big difference in my life, unless I wanted to run a marathon. Which I certainly did not. No drama.
On his way out the door, he paused and said that he and my surgeon are both confident it’s nothing too serious and it wouldn’t be cancer or anything like that. He walked out the door as I froze. Cancer? Huh, what? I hadn’t once thought of that, he’d immediately said collapsed lung and that is what I instantly presumed, not another scenario entering my mind. I quickly became annoyed that he would even mention the word cancer if he didn’t think it was cancer and shrugged it off.
Later that day I was wheeled in my bed down to X-ray and had a CT scan of my chest and also had a full spinal X-ray to confirm my Optimus Spine status.
The next morning I was visited by a cardiothoracic surgeon. He asked me if my ears were burning? Apparently he had just come from a meeting of surgeons and oncologists where I had been discussed at length. I had become, or rather the cloudy mass behind my sternum, had become an enigma. The CT scan showed it wasn’t a collapsed lung but the question was how to diagnose the enigma. This new surgeon informed me that they decided on a biopsy and a PET scan. He told me it was going to be a big day, but the good news is that tomorrow we would have answers.
Later in the day my bed was wheeled down again to the X ray department. I knew how much it had hurt the day before getting onto the table for the CT scan. (Remember I still was recovering from major spinal surgery and had about 200 staples down my spine. No exaggeration.) I asked for something to help me through. A nurse was very obliging and injected me with morphine before I left. Which turned out to be very handy because there was a delay and my bed was in a parking bay, (for real, hospitals have parking bays for beds), for three hours so the morphine gave me a great sleep while I waited. (Morphine completely knocks me out.) After the biopsy, which was quite quick and not as painful as I expected (once again grateful for morphine) I was in the parking bay for another two hours waiting to go to the PET scan. This time I was given a gourmet food magazine, which was good because I like food mags and I was coming a little bit more lucid, although not enough to stay awake for long, It turned out that the food magazine may not have been the best selection. I hadn’t eaten much lunch and I was starting to get hungry. My taste buds were salivating as I read an article about fancy doughnuts. It took me over an hour to read the article because I kept falling asleep and then waking up and examine the picture once again and then fall asleep dreaming of fancy doughnuts.
When I was finally wheeled in for the PET scan it was evening and as the shadows started to fall in the hallways of the hospital they also started to form in my mind as I was pushed through giant doors marked with radiation symbols. As I said, cancer has only been a peripheral experience of mine. No one I have been really close to has ever had cancer. I hadn’t realised the PET scan was solely checking for cancer, which I should have because the possibility of lymphoma had been mentioned to me. My heart rate began to increase, my hands started shaking. I was put in a dark room alone I closed my eyes and decided that I was not going to focus on the what ifs. So I shut my eyes and thought about my kids. Which made me start crying. So instead I shut my eyes and thought about fancy doughnuts and all the exotic locations I could eat gourmet doughnuts in.
Because the surgeon had said we would have answers the next day, Alex drove down and hung out with me in my room. You never know when doctors are going to appear when you are in hospital. It’s a bit of a lottery. By 6pm we realised that it seemed our number was not going to be called. A nurse rang and talked to the surgeon who appeared to have no recollection telling me that I would receive results today. Alex went home to Toowoomba and I had another doughnut dream.
Thankfully at 6am the next morning the surgeon arrived in my room with the results. It was a thymoma and the biopsy showed it was benign. Phew. But it was still dangerous. It meant another major surgery as soon as I had healed sufficiently from the surgery I was currently recovering from. A thymoma is a rare tumour (that explained why it was such an enigma) that was located just behind my sternum. My thymoma was a particularly large one and had potential to continue growing, with potential for rapid erratic growth and was dangerously close to my heart and major arteries. I would need a sternoctomy (sliced down the breastbone and ribs pulled apart) to remove it. I couldn’t help but feel a little fear as he had previously told me that lymphoma would be easier to treat than operating on a lump in this area. However now that the task was at hand the doctor was sounding positive so I decided to be positive too and breath a sigh of relief that it wasn’t cancer.
Fast forward to the days after the chest surgery. The thymoma was removed. I had survived the most pain I’d ever felt in my life when I woke up from that surgery, and after that was under control, was relieved that the ICU experience wasn’t as bad this time as when I had the back surgery. The 2nd morning I was in ICU my surgeon came and sat by my bed. Not a good sign. He started with, “This thing is not at all what any of us has expected.” Also not a good sign.
When the tumour was sent for analysis at a lab, it was discovered that in fact there was only a small portion of the tumour that was benign. The biopsy was just a fluke that saved me from a little less worry for 6 weeks. Which I am semi-grateful for because my worrying about the chest surgery was quite sufficient. The majority of the tumour was B2 cells that are pre-cancerous. 10% of the tumour were B3 cells, a rare aggressive cancer called thymic carcinoma.
When the tumour had been removed it was a about 10cm in length and diameter and rock hard. It had pressed against and become entangled with a whole heap of arteries and was difficult to remove. Some of the tumour was stuck on the sides of one of my major arteries into the heart. The surgeon made the decision to leave small spots of the tumour there rather than risking a major bleed. The tumour had also started growing into my lungs. He had sliced the tumour away from this and took a bit of my lungs with it, but he had assured me that I would not really notice this. We hope the cancer was only there and is now removed, but now there was a possibility of microscopic cancer cells within my lungs.
Chemotherapy and radiation are needed. Once again I’ve been playing the waiting game before starting another round. My body needed to heal sufficiently before we start the next round because the radiation will slow down or halt the healing process. I’ve now got the all clear and am waiting for my first round of treatment next week.
For the first week I was fine if we talked about the medical side of things. If I thought about my children or Alex, I would be a puddle of tears. It’s not nice to speculate about your children growing up without you.
As I said, I’m praying for a happy ending and we have every reason to believe there will be one. We are so fortunate that it has been caught early. In fact it may be that there is no cancer there at all, that the spots left are benign and the cancer cells haven’t spread. It’s not a risk I’m willing to take. The thymoma was slow growing, we can see it on x-rays dating back to 2014, and I can recall side effects that would suggest it was around as far back as 2012.
I have prayed that I will see my children get married, my grandchildren and even great-grandchildren. And also a gourmet doughnut. I still haven’t encountered one.
Whatever the outcome, I have full trust in God that he cares for me and His will is going to be accomplished in my life.
OMG Caitlin. I had no idea you had been battling this. Our prayers are with you darling girl and with your family. I pray for strength as you face your first treatment. Sending love, prayers and faith for full healing your way. xx
I’m feeling all the feels with you Caitlin. I’m sorry.
I’ve been through Breast Cancer , Sarcoma and early melanoma (only required surgery X2) in the last 5 years. June 2012 by world turned upside down each time.
I love the last line you wrote.
“I have full trust in God that he cares for me and His will is going to be accomplished in my life.”
I had chemotherapy with Breast cancer , then radiation with the sarcoma in my thigh. It was never as bad as I feared it would be.
I will pray for you. As many did for me.
Dear Lord, Please give Caitlin “peace” at this time. Cover her in your hedge of protection and send her and her family the support they need on this journey.
Fill her with your strength so that she may get through each day, knowing You are there with her every step of the way. I pray for her comfort in knowing You are in control. Amen.
PS I am a mother of an almost 24yr old and 10 (almost 11yr) twin boys.
Thanks so much for your comment, (and sorry for my slow reply). It’s nice to hear from other people surviving cancer. You sound like you have been on an enormous’journey’, (I know some people hate that term, but I haven’t worked out a good substitute yet.) Appreciate your prayers and encouragement. xxx
What a journey you’ve been through. This diagnosis is enigmatic. Your account of it heartrendingly poignant. You may not yet realise it yourself, but are the strongest person I know. Sending all my love and prayers your way.
Hi Caitlin, gosh I can’t believe it. What a rough trot you have had, as if a big cut down your spine wasn’t enough then to have the pain of cutting through your chest and ribs (I hear that is terribly painful). You poor thing. I am sending big hugs. Stay strong and hang in there. It is all a bit much really. sending all my love. xxxx
Oh Caitlin….I am so, so sorry. *Hugs* I can’t even imagine what you and your family are feeling and thinking. Praying with you that the doctors got everything, and that whatever they missed is nothing. So many prayers for you all.
Hi Caitlin, I will be praying that you see grandchildren and great grandchildren.
God bless you and your family with total healing and abundant life.
Wow Caitlin, this is just incredible.
I haven’t seen you since I was in school, but I’ll remember you in my prayers. All the best for the next few months, praying God does a wonderful work in your life and body in that time!
Thanks Jess. (Now I’m trying to work out who you are! I need a pic in that little profile box!)