Everyday, something changes
It is now February 1st, and although it hasn’t been long since my first post, it feels like weeks.
I was originally scheduled to meet my gyn/onc on Jan 26th, which was a bummer because Paul and I had a trip planned to go the Manulife Elite conference in San Francisco for a year now and this past Summer our good friends Chris and Claire invited us to go to Napa after for some private wine touring. This appointment meant cancelling the trip, at least for me. Then on Jan 16th they called and moved it to the 23rd! Which was awesome. It would mean I would miss the Manulife conference portion, but would catch up with Chris and Claire and the gang to head to Napa for 3 days. Then, they called me on the 19th to come in that morning… so Paul changed my flight for the third time and donated $1250 to Air Canada to book the exact seat I had in the first place on Jan 20th. Not important details.. but really!? WTF
Companies like Air Canada should have a special department called the “Compassion Dept”. I’d love to work there. People could get transferred over and you could decide how you could help them. People have to fly all the time for reasons that are out of their control and it would be awesome if there was some human element to the cost of it all.
Dr. Lee, the Gyn/Onc that I met on Jan 19th at BC Cancer Care was lovely. She had two resident doctors meet me first and review EVERYTHING. They they both physically examined EVERYTHING. The young female doctor, whose name I didn’t get, was really awesome. She was actually using some of the lingo associated with Granulosa Cell Tumor that I have been staying up nights reading about. They did a biopsy of the lining of my uterus. Dr Lee came in afterwards.
The one thing that is really special about the care you get at this facility is that they treat the whole person. Questions like, “How are YOU doing?” and “Do you have lots of support?” almost always come up at my appointments. Dr Lee seemed quite confident that all I would need at this time was surgery – the invasive surgery that I already described. I talked to her about sex, sex drive and even ability to have an orgasm. Will these things be possible after this surgery? Think about it, 6 weeks later they are lopping my breasts off. Like, will I even feel female in a few months time? She assured me that all of these questions were important and she was glad that I was asking them. They take this seriously and want you to feel the same drive and femininity that you felt before surgery. With hormone replacement therapy and the help of experts at the facility, she is confident that all of these concerns would be fine.
I will warn you however, if you are scheduled for a hysterectomy – do NOT watch youtube! Every woman who has had a bad experience and lives with depression, no sex drive and a really dry vagina has done a youtube tutorial about it. Note to self – no more research on youtube.
I left feeling good about meeting my surgeon who was compassionate, kind and although she did seem a bit vague when I asked her if she had ever had a patient with Granulosa Cell Tumor Ovarian Cancer before, I felt at ease.
The only part of the apt that really stuck to me like gum on my shoe, was when she explained that with this type of cancer you don’t go into remission but rather are monitored for pretty much the rest of my life as it can reoccur up to 30 years for now. They call you NED between scans and apts. NED means no evidence of disease. People have asked what I hope for on my 50th birthday which is this summer in July. Well, now I know.
Our week in California was different. When you have the “c” word, people hug you differently. Just a little bit firmer and definitely a bit longer. Everyone is kind and helpful. I am going to treat everyone from now on as if they have this dreadful disease. The world would be a better place if we all did.
I found a facebook group called GCT Survivor Sisters that has 745 ladies in it from all over the world. There is also a Canadian group with 29 women in it. This type is so rare that finding people who can talk about it and share their experience is like finding gold! I got accepted into the facebook group on Monday night when we were in San Fran and I stayed up all night reading the posts. I learned SO much and had so many questions.
The next day, Dr Lee called me on my cell phone to let me know that my biopsy was negative. Awesome. I pulled over my notes from my nighttime of reading and asked her some more questions. I also let her know if the symptoms that I was having; abdominal pain where my ovary still is and where my left ovary was as well as discharge which seemed very odd considering that my surgery was now a month ago. She agreed to see me the following week when I returned home. About 45 mins later I got a call from someone, hard to keep it all straight, to let me know that I had been now assigned to Dr Brar and my surgery would be Feb 8th, not late March.
I tried to enjoy my time away. We have the best friends. So fun, so full of life and so we laughed so much and we even cried a little. The wine was amazing. The company better.
I have no desire to put sugar in my body. cancer apparently has an appetite for it and I’m trying to starve mine into oblivion so drinking wine was a bit of a conflict for me. Part of me is thinking – this is your life, live it! Drink the good stuff. Savour every wonderful moment here with Paul and these wonderful friends in this beautiful place. This is YOUR amazing life! And, then these is this voice saying, “no sugar.’ That phrase “Stand up, Sit Down, Fight, Fight, Fight”… well, I understand completely the Stand up, Sit Down part.
Back home now to Vancouver and the cough and cold I was fighting since my December hospital visit has not cleared and in fact has taken a turn for the worse. I am also having more frequent abdominal pain which is worrying me. Is it there? Is it growing? What is going on? I want it out. In fact, those are the thoughts that wake me each night about 2:30am.
Monday, Jan 29th was another visit to cancercare for bloodwork, ECG, xrays so I went to area where I had visited Dr Lee just a week or so prior and asked who I should now see about the symptoms I was having. The most lovely lady snuck me in to see Dr. Brar who happened to me there for clinic that day. Within 10 mins I was sitting with a resident doctor who again, needed to know EVERYTHING.
Upon examination, Dr Brar assured me that everything seemed okay and that either way surgery was just over a week away and he would be taking it all out at that time so I just needed to rest and get healthy for that surgery.
I visited my GP, Dr Hasinoff for antibiotics, puffers and sleeping pills and promptly when home to bed. She said that I had been so worried about the big stuff that I hadn’t really taken the cough seriously. Bronchitis and a sinus infection had set in and now I have to focus on getting better promptly. In fact I have until Tuesday, Feb 7th to make good improvement or they will postpone my surgery.
Please pray for this infection to work it’s way out of me. I have bigger things to deal with.