Early this morning I was having “hotline” vibes. A few days has passed since surgery and I feel like I have tuned you in and now left you with dead air.
The days leading up to Thursday were a blur to me. Between blood work, X-rays, an ecg and trying with everything I had in me to get my chest and sinus infection better, there wasn’t much time for anything else. In fact, until Tuesday when I finally was cleared for surgery, I hadn’t really thought about the actual procedure a lot.
Tuesday was a great day. When I was very first diagnosed with my ovarian cancer I was starving for information about it. If you google Adult type granulosa cell tumor you will get definitions of what it is and some research papers written by doctors or pathologists in medical gargon. In searching, I found the granulosa cell research foundation as well as the name Dr David Huntsman. Dr Huntsman is one of the few Canadian doctors who have been given a grant from the foundation for his research into the rare cancer. I learned he does his research at the UBC about 45 minutes from my house.
His title is:
David Huntsman, MD, FRCPC, FCCMG
Dr. Chew Wei Memorial Professor of Gynaecologic Oncology, UBC Professor,
Departments of Pathology and Lab Medicine and Obstetrics and Gynaecology,
UBC Director of OvCaRe, Vancouver General Hospital, BC Cancer Agency and UBC
Distinguished Scientist, Department of Molecular Oncology, BC Cancer Agency
Research Centre Canada Research Chair in Molecular and Genomic Pathologyso… I emailed him. I was quite afraid at the time and desperate for information.Subject: Seeking Help
Dear Dr Huntsman,
(I started by telling him my story, including family history details of the breast cancer and details of both of my recent diagnosis’.)
Then, I typed…
I am emailing you as I am scared and fighting for my health. I am a
healthy, active women with three daughters and three step daughters. Can you direct to me the right place for the next steps? Is there a place in your program for me? Any advice or care you can provide is so very much appreciated.
I sent the note at 4:10pm and at 6pm the same day this note was in my inbox:
Thank you for your email
I would be happy to speak with you and Kuldeep my assistant could set that up.
As you are very worried the following may be of comfort (this is perhaps the only type of ovarian cancer where the news is so comforting)
1- The diagnosis of stage 1 adult type granulosa cell tumor does not change your life expectancy (you are just as likely to live till 90 as before this happened) -nothing radical or urgent is needed but some follow up may be warranted
2- the granulosa cell tumour is not associated with your family history of breast cancer but as granulsoa cell tumours secrete a lot of estrogen it may have either caused or accelerated your breast cancer -your breast cancer should be treated as any stage zero breast cancer and if it is estrogen
receptor positive it is likely not growing much now
I am not a gynaecologist but may be able to help with some advice
easy for me to say but don’t panic
It was such a human response and was so reassuring. Knowing he would take the time to talk to me about it gave me so much comfort.
Knowing that his belief that GCT wouldn’t steal years off my life was, although hard to believe, so good to hear!
Kuldeep scheduled our call for Feb 6th. Both Dr Huntsman and I had many questions. He wanted to know first if my upcoming surgery was necessary. I told him everything I knew and had been told so far. I also told him of the pain and discharge I was still experiencing now 7 weeks after my initial surgery. With certainty, he said “You still have GCT there and you need to have this surgery.” What he explained to me is that my cancer is the only one that is for the most part surgically matched. It doesn’t respond well to chemo or radiation so when you have a tumor(s) they go in and cut it out. This does happen many times to certain patients. What he wanted me to believe going into my surgery was that Dr Brar’s surgical methods on the 8th would be the cure for me. So, that’s what I set my mind to focus on. Dr Huntsman said he would speak to Dr Brar and that he’d like to stay in touch. I have already and will continue to send a sample of all of my tissues to his research program.
Alyx came home on Wednesday night from School. She is in a respiratory therapist program at Thompson Rivers in Kamloops. She had an exam Thursday but believe it or not, her professor’s Mom passed away and so her exam was cancelled at the last minute.
At 5am Paul, Alyx and I headed to UBC’s University Hospital. Johnna was my pre-op nurse. She was really good at her job and moved through the many things she needed to do very efficiently. I had the resident Dr Giesbrecht speak to me first about the chest infection and the risks associated with putting me to sleep. She then got the Sr Dr who came and spoke to us, got a ventolin mask going and waited to see improvement. The gyn oncologist team came as well; Dr Rachael, another Dr and Dr Brar. I let Dr Brar know that I really didn’t want them to do anything with my lymph nodes unless he felt it was absolutely necessary. Many survivors in my GCT FB group suffer from lymphadeama and GCT rarely moves to the lymph nodes so I didn’t want the added risk if it was not necessary. He agreed.
After two doses of the mask, my chest was clear and I hugged and kissed Alyx and Paul and headed into to OR.
I don’t feel fear very often. I’m not a shy person and I have never shyed away from much in my life. Fear feels similar to anger in your chest. Your heart races and you can hear it beating in your ears loudly. What is going on inside your body is much louder than what is going on right around you. The voices were muffled and clanging and banging was distant and muted. You can physically feel fear. Dr Rachael could see it too. Just as they were getting ready to put me to sleep, she stepped forward and reached for my hand. I could see her lips saying “you’ll be okay.” I couldn’t hear her though for the beating of my heart.
If you looked up the definition of disorientation in the dictionary I’m sure it says – the state you are in when you wake up from an anaesthetic. Dr Brar was there talking to me, a nurse too… other than knowing that my lymph nodes were untouched and that all went well I can’t recall a thing he said.
A pre-op call I had with a nurse one week before surgery included some good advice. She told me that the super surgeon would likely feel so good about his work that he’d want to send me right home but that I should listen to the nurses as they knew best. This made me smile when the nurse sitting with me in recovery said “The Dr said you can go home later today, but you are not going home! You’ve got a chest infection and 5 incisions. That’s crazy.” So I spent the night. I’m glad I did. I had lots of pain and my nurses were so good at keeping it all under control.
Dr Brar came back later that evening. No idea when these people sleep. He said that there was some granular tissue on the left side of my abdomen and some scar tissue there as well. My right ovary was red and somewhat swollen. The rest of my tissue was very healthy and pristine. Everything has been sent to pathology and he will call me with results in 2 weeks.
He reminded me that no matter the results we would continue to see one another as close monitoring for reoccurrence is my path now.
I think I am doing really well. I have let others help me. That’s not really my thing, so that’s been good for me to do. Our family is amazing. Paul has been scared and yet so brave. He holds my hand almost always. When I wake up in the night, he is holding my hand. I love him. My girls and my stepdaughters are so kind, caring and thoughtful. My 1st husband and dear friend Al has been there every step of the way and Paul’s 1st wife Alison has been doing everything in her power to help me with comfort and healing. And my tribe!!! Wow, it is overwhelming to feel so loved. Reassuring to know you are strong and positive and that everyone believes in you getting through these challenges.
I am thankful for the meds, notes, calls, flowers and love.
My lady parts may be gone but my heart has proportionately grown in their absence. #igotthis