There's absolutely no delicate way to say this... well maybe there is, but I'm too exhausted and heavily medicated to find it. The cancer is back. It's bad. It's just about as bad as it could be. Unless something really shocking comes out in the next 24 hours, I won't be dying in the next few days, but we are talking about my life in terms of how to extend it.
Here's the background. We thought the pain I've been having for months was kidney stones. We had ultrasounds and x-rays and CT scans that confirmed there were a few small pesky stones in my right kidney. There was a lot of waiting and a lot of pain, but finally on August 1st I had surgery to remove the stones. When I woke up I found my surgeon looking over me telling me there was nary a stone to be found. What the hell?? Had I passed it?? Maybe, but probably not. "Come see me in 6 weeks" he says. Uhhhhhh, ok.
Recovery from this surgery did not go well. Please trust me when I say that this is a huge understatement. We ended up in emerg at one point due to the pain. Long story short, there was a huge blot clot, they did blood tests, gave me morphine and sent me on my way. Later that week I have a follow up with my doctor. At this point, I'm in the doctors office once or twice a week for more pain meds. I have built up a very high tolerance to the narcotics and pain management has become somewhat of an issue.
During all these visits I start to talk to the various doctors I'm seeing about my spidey senses. I'm starting to think that this is not about my kidney at all. I have years of experience with kidney pain and it has always been in my back. But the pain I'm having is in my groin/pelvis. I'm told more or less that this is just referred pain from the kidney stones... but I knew. I knew it wasn't. I was tired. I was tired in an odd sort of way. I have never been a good napper. But I needed to sleep and I could have fallen asleep anywhere. I had no energy. I was taking an unusually long time to recover from a very simple surgery. Tingle, tingle, tingle.
Somewhere along the way, I start to get short of breath. Finally I see my regular family who, in an effort to leave no stone unturned, sent me for more tests, this time including a D-dimer test. This test is to figure out if I've got a blood clot somewhere. She calls me back that evening at home (Lyla's 2nd birthday) and says I need to go to emerg, because my numbers were high and I needed to finish the workup. Hours and hours later at emerg they order me a chest CT with contrast. The ER doc comes back and says, good news there's no clot in my lungs. My shortness of breath is probably due to generally feeling shitty after the surgery combined with the ridiculous amount of pain killers I'm on.
And then he says: "I take it you know about these lymph nodes...." Awkward pause.
No. No we didn't. Yes they were there over a year ago at the time of my diagnosis, but as far as I know, chemo got them. Well, these are bigger than they were at the time of your diagnosis, and there's a new one there now as well. "You should follow up on that", he says. No shit Sherlock. Corey and I walk out of the hospital in total silence. We didn't say a word to each other until we hit fresh air in the parking lot and Corey just lets out an angry, "SHIT". I start crying. We knew. We knew something was wrong. I knew it was back. But my rock of a husband immediately goes into protective mode and comforts me with all the other things it could be. Still, we drove home in such shock that it wasn't until we pulled into the drive way that I noticed we left the hopsital with the IV still stuck in my arm. Awesome. We tested my mum's rusty nursing skills... turns out she's the best of them all. She's actually the only one that manages not to leave me with a bruise. It does go to show that there's nothing like a mother's touch.
In the morning I call the cancer agency (a number I sadly still have memorised). I'm crying to the receptionist - I blame my tears on the narcotics - and she gets my new oncologist (my original one is on sabatical) to call me straight away. Once he's seen the report from emerg he orders a PET scan. Now I know people who have waited months to get a PET scan. I got mine in 2 days. Tingle, tingle, tingle.
While I'm waiting for the results I'm in my doctors office again for more pain meds. It's the end of the day last Monday. She's as anxious as I am about the results and decides to leave me in the examining room to go call the cancer agency on my behalf. I'm waiting with Lyla. I'm waitng for too long. She's gone for too long. My spidey senses are no longer tingling, but vibrating throughout my whole body and if I didn't have Lyla there Iwould have fainted just waiting for my doc to finally walk back through the door.
In she comes, as sad as I've ever seen her and she knows that I know. I can honestlly say that my doctor loves me. We're hugging and I'm crying out in her office yelling I can't die, I can't leave Lyla, she needs me, she needs me, she needs me. Somehow in the middle of my hysteria I actually manage to listen to the information my doc is trying to share with me. There is spread in the lymph nodes at the original site as well as a large mass in my pelvis. There's significant spread throughout my lymphs nodes down through my belly and back. It's in my bones. At least in 2 vertebrae, my illiac bones, the top of my leg bones. The mass in my pelvis may or may not be in my ovaries. My uterus is also involved. So the pain I've been having in my groin that refferes up to my kidney is actually a huge cancer mass that's pressing on my bladder and uereter. That's now caused some nephrosis of my kidney. Some of this info I gathered later, but I thought I'd just mention it all in one go.
Because I'm not suffering enough at this time, I choose to break my heart and my doctor's even further by sobbing out, "Am I going to die???". She looks at me and says, "Maybe". We're holding hands at this point and I swear her grasp is the only thing that is keeping me tethered to sanity. "Is cancer going to be the thing that kills me?". "It looks that way".
I am up and down pacing around this tiny examining room wavering between breaking down and steeling my nerves and yelling I'm never going to leave my daughter. I JUST WON'T. Meanwhile Lyla is all, "You need a hug mommy?, You ok mommy?" She's turning on the charm, clearly aware something is going very wrong and is doing her best to make me happy. She's pulling out all her tricks in an attempt to get praise and see me smile. "I love you mommy".
My doctor has now called my mum and Corey. Both are out of their minds with worry and although they don't know what i know yet, they've gone to worst place possbile. My mum's closer to the office so she gets there first. We have the hug no monther and daughter are ever supposed to have. Her worst nightmare has come true and i feel like it's all my fault. After she finishes telling me I'm never to appologize to her again about this, we make a plan to get home. We spend a very sombre night at home with family and waver between crying and sharing I love you's, to gathering our strength and making a plan to outwit, outplay, outlast cancer.
We are seen by my new oncoligt the next day. Dr V. walks us through the PET scan and it's bad. Worse than we had imagined. There's cancer in so many different places, presenting in such unusual ways that he can't confidently tell us what kind of cancer I've got. He tells us about all the tests that stand in our way of starting chemo asap. In the end, he decides the best thing to do is admit me to the hospital in the cancer agency in order to expedite all the tests and scans to come. That's where I've been since last Wednesday.
Throughout the last week we find that there are 3 options the cancer could be.
1: Recurrence of my breast cancer. This would be the worst. There would be no cure. The small hope we have is that the cancer activity shown on the PET scan is unusual for breast cancer. Fingers crossed.
2: Lymphoma. It would be stage 4 as it has spread to my bones, but this is what we are hoping for. Chemo has the best chance of melting this away.
3. Ovarian: this is a long shot, because it doesn't seem to be behaving like an ovarian cancer, but we have to consider it due to the location of the mass in my pelvis and the fact that the uterus was involved.
I've had a bronchoscopy, a uteran biopsy, a bone scan and a small surgery to insert a stent in my kidney. And I've waited. I haven't had a second alone. I've been surrounded by my family and best friends from sun up to sun down. And yesterday I finally heard.
It's option #1. My breast cancer is back and it's incurrable. I start chemo today. The plan is that I stay on chemo for as long as it continues to work. Once it stops working I'll switch to a new chemo. I'll keep doing this until there are no more chemo's left to try. We are hoping that one of these chemo's will put me into remission. Any remission I have will be temporary. The cancer will come back.
I don't have the words to explain what i'm going through. The truth is, I bounce back and forth between my emotions so fast that it gives me nausea. I'm hoping for 3 years. The average is 2. Some only get 6 months. At this very moment i'm feeling numb. It could be the drugs.
I can't believe I'm writing this. I can't believe that this is happening to me. Unfair doesn't even begin to get at the unjustness of what I'm feeling. Good god, I can't believe i won't get to see my daughter grow up!!!!! My Lyla..... I have no fucking idea how to face this.....
I have no intention of going quietly. I will not be one of those people who refuse treatment. I want the book thrown at me. I will get a second opinion. A third if I have to. I have so many people offering to help. Everyone's heard of the people who are told 2 years, but then get 10. I am going to do absolutely everything I can to be one of those people.
I need to stop writing now. It's taken me days to get this all down. I chose to write a fairly detailed account of my last few weeks so that I wouldn't have to tell the story over and over again. With the help of my bestest friends I have set up a facebook group, Ashlyn's Angels, in order to share information more effectively. The group is open to anyone.
And my chemo just showed up. Here goes round one.
Please forgive the typos. I don't have time to proofread, and I've done this whole thing on the ipad.
I don't know how to end this post, so I'll just say I love you all.