Since getting the bad news about the extent of my mother's cancer two weeks ago, things have been rough; which is to be expected, but we've been a little surprised with how positive we've become. We're all far more aware of how valuable every moment is and we're making the most of it. I'm not crying all the time, though I do still unleash the occasional scream of *fuck you cancer!* And for a moment, it feels really good. I think it knows I hate it.
I had to call my mother's best friend last week to tell her the news. That was horrible.
As of yesterday, I was STILL trying to get a hold of my brother, with little success. I ended up calling his girlfriend's mother. That helped. When I got to work I opened this email from him:
Sent: Tuesday, October 26, 2010 5:20 PM
Got a msg today that mom is sick??? Whats up?
So I did what I didn't want to do. I told my brother that his mother is dying via email. Here it is (below) in it's entirety. I feel empty and sad and inadequate. For ease of reading, people mentioned are: Kahney (the girlfriend), Gayle (girlfriend's mom), Chris (my hubby), Helen & Joe (my mom's best friends - like an uncle and aunt to me and my brother).
Anyway, have a read if you're daring. I'm desperate for my brother to feel OK and not completely overwhelmed when he's done reading it. Let me know if you think I did an ok job in trying not to completely blindside my brother, yet be honest. :(
I wanted to tell you on the PHONE.
Yes, mom is sick. She has cancer.
I’ve tried so hard to find a way to reach you. I had to tell Gayle because I was trying to get Kahney’s number at work so I could tell her and she could help me figure out the best way to tell you. I wasn’t expecting for you to get this third hand. I wanted to be able to tell you myself. I’m sorry. Chris was supposed to go to Toronto yesterday and since Gayle gave us your new address last week, he was going to go tell you in person. He got a job here though and his trip was cancelled – literally 3 hours before his plane was to leave. So needless to say, I’ve been rapidly running out of options on how to break this news to you. I just told Helen last week. She even offered to go tell you, so you’d have someone to hug when you got the news. You have no idea how much I’d give to hug you right now.
I decided that if I couldn’t get Kahney, I was going to mail you a letter – with lots of pictures of all of us and maybe even a video on a flash drive so you could feel a little closer… The absolute last thing I wanted to do was tell you in an email. That’s just wrong on so many levels. Yet here I am doing just that. But you need to know. And no matter how I tell you, it still sucks.
Now before I go any further, I want to tell you that mom is ok right now. Aside from being a little tired and some localized discomfort, she’s fine. And probably will be for a while; or until she starts treatment, because I think the side effects from that are shitty.
Alright… now I’ll start at the beginning.
In June, mom called Helen to say she’d be coming for a visit in August. Helen told her that her sister Mo had recently died from colon cancer. I have a feeling something resonated with that conversation because all of a sudden mom tells me she’s going to the doctor to get a spot on the bottom of her foot looked at. She showed me. It was a flat, irregular shaped mark on her left foot, about the size and colour of a kidney bean. It didn’t bother her in anyway, but it had been there a little while and had recently gotten bigger than she remembered.
Right away, the doctor said it looked like a melanoma. She did a biopsy and it came back positive. The strange little mark was officially cancer. It’s a rare form too; Acral Litigious Melanoma. It shows up on the palms of the hands or soles of the feet and is not usually sun related. The immediate plan was to get it removed. Mom got in with a surgeon early July and he cut out the lesion from mom’s foot. It was a simple in office procedure that took about 10 minutes. Mom was on crutches and then a cane for the rest of the summer. We took mom to Toronto as planned in August. She hung out with Helen, Chris and Grace stayed at the house and I went to New York with some girlfriends. I tried getting you to tell you we were visiting, but just figured it wasn’t in the stars… We would have told you about the cancer then of course, but really, we were confident that the removal of the lesion would be the end of it.
When we got back, mom had her follow up appointment with the surgeon and he advised that the pathology showed he got the whole tumor, but not enough radial tissue (basically, they need a certain amount of healthy skin removed around the lesion to be really sure it’s all gone). So, the next step was to get mom into see another surgeon that specializes in melanoma. That doctor, Dr. H, would do another operation to remove the extra tissue and also do a biopsy on the lymph nodes in her leg to make sure the cancer hadn’t spread. By the time mom got into that appointment though, it was September and she had some weird pain and swelling in her groin. Dr. Helyer explained the planned surgery and said she’d send mom for a CT scan to check for signs of cancer elsewhere. Then she felt the swollen node in mom’s groin and took a syringe to extract fluid for biopsy. She said if that came back diseased, the lymph node would need to be removed in a completely separate surgery. Needless to say, that biopsy came back positive. The cancer had spread up mom’s leg.
When we got that news (around the 20th of September), Dr. H cancelled the CT scan and ordered a PET scan instead. The PET is nuclear imaging and is a top level scan and would give the best possible information about how far the melanoma has spread. It made me confident and worried all at the same time.
Mom’s PET scan was on October 6th and Dr. H called mom in on October 12th to discuss the results. I left work and drove mom in to Halifax. I was not feeling good about this at all.
Dr. H told us that the melanoma had spread even further than the lymph node in her groin. It had spread into a large number of lymph nodes in the torso all the way up to her chest. The news was a big blow. Worse though, was finding out that surgery (the best line of defense against melanoma) was no longer an option because it would cause “life limiting complications”. So the news from the surgeon was very grim. Mom has stage IV metastatic melanoma – which means it has spread to distant lymph nodes that cannot be removed. Prognosis is terrible, typically. Survival could be as awful as only 9-12 months. Melanoma is a nasty, ruthless cancer that is not considered a curable cancer. (THIS IS THE WORST OF THE NEWS. It gets better from here, honest. This is also killing me that I can’t hug you right this minute!!!!!)
Mom’s next step was to get set up with a medical oncologist and radiation oncology. Since surgery was out, focus was being placed on ensuring mom has a chance at tumor reduction and ensuring quality of life and hopefully extension of life.
We met with mom’s new doctor yesterday (Dr. D <-- I LOVE her, she’s amazing!). It was a long appointment and a little rough at times, but we both left feeling really good! Mom has LOTS of decisions to make about treatment and even though she’s got a rough fight ahead of her, all hope is not lost. Though melanoma wins many times, people CAN beat melanoma; even metastatic melanoma. We heard several stories of people in worse shape than mom (cancer was spread to vital organs etc… - mom’s organs are ALL clear for now) and these people had done so well with treatment that the cancer completely went away. There are even cases of melanoma that just spontaneously clears up. That being said, melanoma is most often really resistant to any treatment, which is why it’s so deadly and one of the worst cancers to have. We need to stay focused on the positive and put some faith in the hope that is there, but we should also prepare ourselves for the worst. We need to make the most of every moment we have with mom… I want you to see mom as much as you can over the next little while (more on that later…) For now, know that we’re coming to Toronto for Christmas for about 11 days. We need to make this the best Christmas ever ok? I can’t wait to see you and neither can mom.
Here’s the rundown of treatment options available to mom right now. It’s point form and lists basic pros / cons. Like I said, the appointment was LONG and there are LOTS of hard decisions to make:
- Chemo therapy: Mom can start right away, it has helped some people and in some it has completely killed the cancer. The downside? Yucky side effects (google: Dacarbazine) and on average it is poor at really doing anything positive. It has a track record of having result in only 10% of patients (mom could be in that 10% though…)
- Trial: There is a study running comparing Dacarbazine vs. Interleukin 21 (an immuno therapy). Basically, chemo kills good and bad cells and Interleukin (already made by your body) boosts the immune system to help you fight the cancer. Interleukin also has a poor track record with melanoma, helping only about 10-25% of patients, there’s yucky side effects also. The trial is randomized. Mom would be selected at random to receive either dacarbazine or interleukin. She has 21 days to get a huge amount of CT scans, MRI’s and blood tests done before she can be part of the study. If the system is backed up and she can’t get the tests done, she’d be unable to participate. She also needs follow up scans and tests every 6 weeks. All that for a 10-25% chance that it will help. I fear this would exhaust her. Also, if she’s picked for the Dacarbazine, she’d have delayed treatment up to 3 weeks. Mom’s really anxious to do something now. She’s feels she’s waited long enough.
- Radiation: This can help shrink the nodes in her groin and make her more comfortable. She can get this done in combination with medical therapy. She hasn’t had an appointment with radiation oncology yet. (Possible in a week or so.)
- Princess Margaret: Mom can be referred to oncology in Toronto. This excites me because they are likely to be running trials on two very interesting treatments that AREN’T running here: PLK4032 (I researched a LOT and this one is my favorite and I asked about it yesterday. That’s when Dr. D brought up Toronto.) PLK4032 is in stage III of trial and has shown huge benefit in 80% of patients. Mom’s cancer needs to have a BRAF mutation for it to work though. Most melanomas have the mutation though. Dr. Davis can have it tested. The other treatment is Ipilimumab. It is a riskier treatment, but is very close to being licensed and has also shown to be more reliable than Dacarbazine and Interleukin for treating melanoma. Since we’re going to be in Toronto for Christmas, Dr. Davis suggested setting up and appointment at Princess Margaret maybe the week before. We can always try to do that sooner too.
- Another option is a trial (in Halifax) on another inhibitor similar to PLK4032, but it isn’t opening until mid December.
So this is what mom and I have been thinking since yesterday… Chemo is something she can start right away, but the side effects and effectiveness of the treatment are unsavory. Mom feels like she’d be doing something, but also feels like if she picked that, she’d be doing just for the sake of doing something. The trial is not that attractive because of all the tests and scans and the 50/50 chance that she’d end up with the chemo anyway.
What we’d like to propose to Dr. D (today or tomorrow) is that she try to get mom in to Toronto ASAP. The other treatment trials are more attractive, plus she’d be able to see you sooner. In the meantime, mom wants to get some radiation on the nodes in the groin to increase her comfort level and decrease the swelling. If she can’t get into Toronto until December, she’d then consider a round of chemo, depending on how she feels.
Michael, I know this is a lot to take in all at once, but I know you’ll have lots of questions and I don’t want you to have to wait for answers. If you need to call me or mom collect from a payphone DO IT. I’m really so very sorry we’re not closer so we can all deal with this together, but we will all see you very, very soon. I’ve booked my vacation (Dec. 23-Jan. 3) and we’re booking flights this week (maybe today!). Mom may be there sooner and for far longer. We’ll know more next week.
We’re all being very positive and we’re very hopeful that mom will be one of those amazing recovery stories – it’s important for you to try to focus on that too! Remember, mom is in the BEST possible position considering her diagnosis – none of her organs are affected and also, as a woman, she’s statistically more likely to do better.
I copied mom and Helen on this email to you. If you need to call Helen and Joe for anything, their number is XXX-XXX-XXXX. As I said before you can call us collect anytime day or nightXXX-XXX-XXXX.
We love you and miss you terribly. I’m sorry I can’t be with you as you digest this tough news. But remember to stay positive! Our mom is a tough cookie! She’s going to kick cancer’s ass!!
I love you,