It’s About To Get Real

It’s been almost a month since I’ve updated everyone on our Melanoma journey. That’s because we’ve been mostly blissfully unaware of John’s cancer for the past three weeks as we’ve awaited our appointment with Dr. Byrd, the head of surgery at Seattle Cancer Care Alliance. As I told my son Eli last week, it’s about to get really real again.

As much as we’ve tried to find another solution, the consensus for treatment has been confirmed as a radical (but fairly common) surgery called a combined ilioinguinal lymph node dissection. Basically, they’ll surgically remove all of the remaining lymph nodes in John’s left groin and lower left abdominal area (up to 20 or so). We’ve consulted with both M.D. Anderson in Houston and Huntsman Cancer Center at the University of Utah. All three surgeons with whom we’ve spoken and both oncologists agree that this surgery is John’s best chance for survival. Plus, if he hopes to get into any clinical trial (and that’s our goal), having this surgery will be a prerequisite.

Since two out of two of the lymph nodes they removed during his initial surgery (the one where they found the cancer) contained melanoma, there’s a very good chance that there is more cancer in the remaining nodes. Of course, there’s always a chance that they got it all and that the rest of his nodes are clear, but we’re not willing to take that chance. John’s been given a 50/50 chance of recurrence, so we’re doing everything we can to prevent that.

The side effects of the surgery will be lifelong and not much fun. He’s already got pretty severe swelling (lymphodema) below the knee from the two nodes they removed in October and will have to wear a custom made compression garment on his left leg (all the way up to his thigh) for the rest of his life. But he’s working with a physical therapist and an acupuncturist now and that’s helping. We look at it as a small price to pay for his survival.

The surgery will happen some time in the next few weeks and then he’ll be laid up for at least two weeks after that. It’s a good time of year for convalescing, though, so that’s good. We’re also hopeful that once he’s recovered, there will be a spot for him in one of the clinical trials at either Seattle or Huntsman.

Right now we’re focused on joy. On living our lives every day and looking for all that we’re grateful for in each moment. We are so blessed in so many ways, and I am humbled every day by John’s positive attitude and refusal to complain or look on anything but the bright side. It doesn’t surprise me, but it does humble me, since I don’t do as well as he does all the time.

We’ll update you again after the surgery. We appreciate all of your support and prayers and we don’t take a single one of you for granted.

100%, 50%, 1%…It’s a Game of Percentages

One thing I’ve learned in the past three weeks…with Cancer, things can change really quickly. In the week since my last post, we’ve gotten a lot more information and three important percentages. We’ll start with the best one.

100% clear. That’s what Dr. Ness, John’s local oncologist told us at his appointment on Monday. After almost a week of waiting for the PET scan results, it was the best news I think I’ve ever gotten. No spread to any of his other organs, bones, or blood. No sign of the entry point tumor. This, Dr. Ness said, was a huge relief. To his credit, the week before when we met with him initially before the scan, he had purposefully glossed over what the prognosis would have been had the scan showed the the cancer had spread and we were looking at stage 4 cancer. During this appointment, safely on the other side of that scary bridge, he told us. Stage 4 would have been very bad. Potentially a terminal diagnosis. So 100% clear was better than great. We’ll take Stage 3, thank you very much.

John has a 50% chance of the melanoma spreading or recurring in his body. That’s a lifetime statistic and was a bit of a reality check for us this week when we finally sat down with Dr. Thompson, the specialist from The Seattle Cancer Care Alliance on Wednesday. I’ve played with worse odds before (every time I sit down at the Black Jack or Three Card Poker Table), but it’s still a bit sobering to realize that this threat will be hanging over our heads forever.

He also told us that, once John has a complete resection of the lymphatic system in his left groin area, there is really no further treatment they can do for Melanoma. Interferon is a nasty drug with horrible side effects and it hasn’t been proven to make a significant difference in survivability or lessen the recurrence of melanoma in the several years they’ve been using it. Flu-like symptoms and a brain made so fuzzy he won’t be able to work during the year of the treatment don’t seem worth the less than 10% improvement in the odds, so we’re opting out of that course of treatment. There are a few clinical trials going now with a new drug but they’re all full. So he’ll have the surgery and then hope for the best as he’s monitored.

So where did this Melanoma start? That’s where the 1% comes in. After a thorough exam by Dr. Thompson during which he didn’t find a single suspicious mole or lesion, he told us that in 1% of the diagnosed cases of Melanoma, they never find the entry point for the cancer. John says that makes him special.

I didn’t need any statistic to tell me that.

I’ve Never Been Good At Waiting

Action has always been the keyword in my life. I tend to move through life at a pretty good pace. I’m a planner and super organized, and the more information I have, the better I like it.

Cancer just laughs at me. Every day. The sign in the Cancer waiting room says, “Please have a seat…you’ll be here for a while.” And when I go up to the front desk to ask what’s going on or what’s happening next, Cancer hands me a magazine and invites me to sit back down…and wait.

It’s been two weeks since we first heard the words, “It’s Cancer.” In those two weeks, we’ve seen three doctors and John has had three different tests, including the PET scan he had this past Wednesday. That one should answer all of our questions…where is the Cancer, what stage is it, and what’s our first move.

But we won’t have those results until we sit down with his Oncologist on Monday. Two days of waiting down, three more days to go. It feels to me like being suspended in mid-air, straining my toes toward the ground to try to regain my footing but not quite being able to reach. It’s tiring. Of course we’re focused on the outcome we want, which is Stage 3 and not Stage 4, a localized tumor that can be removed surgically and hasn’t spread. Most of the time, we’re focused on that. But, try as I might, it’s inevitable that the “what ifs” start creeping in now and then.

I want to DO something, take action, make a plan, know EXACTLY what’s next.

And Cancer just laughs at me. Not this time, Missy. You have no control here. Please have a seat.

And wait.

Stage 3 Is Actually Good

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We’ve been back and forth to the Tri-Cities so often in the past few weeks it’s beginning to feel like a routine. It’s only about an hour drive and it gives us some one-on-one time to chat. On Friday we made the drive to Kennewick to meet with an Oncologist. John’s identical twin brother Tony drove from Spokane to be there with us and I was grateful for his analytical brain. Sometimes he asks the question I didn’t even know I wanted the answer to.

Here’s the reader’s digest version of what we learned during the 45 minute long appointment:

  • His Melanoma is most likely stage 3 and not stage 4, and that’s what we wanted to hear. While we won’t know for sure until after he has his PET scan this week, the doctor said there’s no indication that he has the more invasive (as in, has already spread to his other major organs, bones, etc.) stage 4. He’s super healthy and has no other symptoms at present so we’re focusing on it being stage 3.
  • The initial treatment for this stage is surgery at the site to remove the entire lymphatic system there as well as the cancer tumor itself if they can find it. They still can’t find the lesion on his skin (and the doctor said there is always an outward lesion with Melanoma, but it can be very small), but he’s confident it’s somewhere in his left leg/thigh/hip in the region where the original lump was found.
  • Sometime late this week or, more likely, early next week, we’ll get the call from The Seattle Cancer Care Alliance and head over there. That’s where they’ll do the surgery and their team of experts will let us know what the next course of treatment should be.
  • The Oncologist said the most recommend course of treatment for this stage of Melanoma is to get into a good clinical trial. It’s such an aggressive cancer that he said you want to be on the cutting edge of researched treatment and a clinical study is the best way to do that.
  • He also mentioned a controversial treatment called Interferon for malignant Melanoma. He said some Melanoma Oncologists love it and some hate it (guess that’s why it’s controversial).This is what Google told me about Interferon:

    “Interferons are a family of naturally-occurring proteins that are made and secreted by cells of the immune system (for example, white blood cells, natural killer cells, fibroblasts, and epithelial cells). The mechanism of action of interferon is complex and is not well understood. Interferons modulate the response of the immune system to viruses, bacteria, cancer, and other foreign substances that invade the body. 

    Interferons do not directly kill viral or cancerous cells; they boost the immune system response and reduce the growth of cancer cells by regulating the action of several genes that control the secretion of numerous cellular proteins that affect growth. Flu-like symptoms following each injection (fever, chills, headaches, muscle aches and pains, malaise) occur with all of the interferons. These symptoms vary from mild to severe and occur in up to half of all patients. The symptoms tend to diminish with repeated injections.”

That’s basically it. So we don’t really know a whole lot more, but we feel very optimistic that this is stage 3 and beatable. The doctor looked John dead in the eye and said, “If it’s stage 3, you are not going to die.”

Right now we’re working on staying present with what we know and not speculating about anything based on what we don’t know. We’ve heard great things about The Seattle Cancer Care Alliance. They are aligned with The Fred Hutchinson Cancer Research Center, The University of Washington, and Swedish Medical Center in Seattle and we feel we’ll be in great hands. We’re also looking into some diet-based treatments to augment whatever medical treatments John gets.

I’ll update the blog again this week once he’s had the Pet Scan and we know more about exactly where we stand.

Three Words Can Change Your Life

John has cancer.

Sitting with the reality of that on Monday (before I even knew it was the badass, angry Melanoma), it just wouldn’t sink in. Not my healthy, happy, never-sick husband. There’s no way he has cancer. But apparently, even healthy, happy, never-sick guys get cancer.

I’m so sorry.

His surgeon, who just 10 minutes before had left us concerned but with no diagnosis and then come back looking somber and uncomfortable after his phone conversation with the pathologist, opened with these words. In that moment, I knew our lives would change, at least for a while.

It’s Malignant Melanoma.

The phone call on Tuesday from John’s surgeon, after further testing of the 3 golf-ball sized lymph nodes they removed from his groin the day before, hit me like a ton of bricks. Hadn’t he been relieved when I had told him that John had had a full body exam in August (at my urging) and been given a clean bill of health? Hadn’t he said yesterday that this was the most aggressive form of cancer?

Here we go.

Today it’s only Wednesday. We’ve had just over 24 hours to process this information and John has already had a brain MRI (which was negative) and we’re set up with the oncologist on Friday for a PET scan. As we walked into the hospital today, I couldn’t help but feel as though we were getting onto a roller coaster with no emergency exit and heading up the first big hill before the scary drop off. Hang on baby. It’s going to be a bumpy ride.

Let me help.

I knew we had amazing family and friends. I’m not surprised by the outpouring of love, support, and offers of “let me know if there’s anything at all you need.” But I just have to say, we are truly blessed and I’m grateful every day for our close knit support community. We will lean on you, I am positive.

We’ll be fine.

This is rapidly becoming our mantra and we keep saying it to each other. I’m working hard to believe it. I am creating a vision of this journey being fast and easy and being on the other side wiser, healthier, and more connected.