Many of you have been asking for an update on the hubs. I don’t want to make this a regular thing on B&C but I do want to keep everyone updated who is interested. I have (with the help of a friend) created a “Family Matters” tab at the top of the site for family updates. I will try to keep it current while not being in your face all the time with all things cancer. Nobody wants to read that….not even me. In fact, I don’t even like to write about it. But that being said it’s important for our family and friends who are far away to keep up with us. And I simply cannot continue to have the same conversations over and over and over again. So here’s my first installment in the Family Matters category.
We have been in the “eye of the storm” if you will. You see after initial diagnosis life becomes a flurry of appointments, scans, surgeries, and tasks. It is torrential. It is all consuming. But the past few weeks it has all but stopped. We have simply been in a holding pattern waiting for him to heal. And trying to make a decision.
You see he is considered a high risk for recurrent disease. Unfortunately the type of tumor he had was what is called “amelanotic melanoma” which means it was flesh colored. It’s fairly rare and doesn’t come with the hallmark warning signs of the disease. What generally happens in people who have this type of tumor is that it is allowed to get much larger than one normally would. This is exactly what happened to us. His primary tumor was 3.2 mm which in the world of melanoma is actually quite large.
The other issue we have is that it had spread to his lymph nodes. He underwent 2 different surgeries within 3 weeks of each other to remove all of the lymph nodes under his right arm. The first surgery removed 4 nodes and there was evidence of disease in 3 of them. The second surgery removed 19 nodes which all came back cancer free!
However, because of his “high risk” status the standard of care is for him to undergo adjuvant therapy. Adjuvant therapy means treatment in the absence of any measurable disease. Basically, we are fighting what we can’t see. There is no way to know whether there are microscopic melanoma cells circulating through his body just waiting to colonize somewhere. Melanoma is quite a nasty cancer. It likes to come back. It likes to come back in different places (specifically the lungs, liver or brain). In order for anything to be seen on a scan (PET or MRI) it must be at least a 1 cm tumor. Now a 1 cm tumor is pretty freaking huge considering it was only a 3.2 mm tumor that got us into this whole mess.
So our options have been laid out for us and we have agonized (and boy do I mean AGONIZED) over them. Stage 3 melanoma just doesn’t have great options as far as therapy. In fact, there is only one drug approved by the FDA for adjuvant therapy. There is a lot of research going on for stage 3 but sadly we were unable to qualify for any of the current clinical trials.
We met with our oncologist this morning and found out she has been fighting our insurance the past few weeks to try and get an alternate drug approved. Unfortunately she didn’t win that fight. So this left us with pretty much only one option: a one year course of Interferon. This is a tough pill to swallow as this drug has a reputation for being one of the nastiest drugs on the market as far as side effects go. However, we have made the choice to move forward. There are several factors that have gone into this decision. The biggest decider has been our children’s ages. They are 6, 4 and 16 months. He feels (we feel) that if it takes a year of hell to be able to watch them graduate high school then it’s the least he could do. Second, his age. He turns 40 in 2 weeks. He is ridiculously young and has so much left to do in life. Lastly, if years down the road the cancer returned we would be kicking ourselves for not taking every possible measure to prevent it. So that being said we have made our decision.
The interferon begins with a high dose for the first month. This will be 2 hour infusions 5 days a week. He will be treated at our local cancer center. After the first month he will switch to self-administered injections 3 times a week. This treatment will last for 48 weeks.
We are grateful to not have to travel to be able to get his treatment. And we are even more grateful that his step mom is an infusion nurse at the facility. She has handpicked our nurse and our educator and everyone that will be taking care of us. We are grateful his father is retired and will be able to help us with transportation and care. We are extraordinarily grateful for our nanny Ms Betty who has made concerns about the children’s care all but nonexistent.
We have two weeks to breathe before our battle begins and it will be an epic two weeks. We leave this Saturday to take our older children to Disney World for the first time. We will spend 6 days in the parks meeting princesses and mice, riding roller coasters, and making fantastic memories. When we return we have his 40th birthday and party to look forward to. I feel very strongly about making sure we do it up big this year and I am considering an adult-sized bounce house. Although one of my friends is looking into an ice luge to enhance our shenanigans. We will take these two weeks and enjoy the ease, for it will get hard. It will not be impossible but it will be hard.
On Monday October 5 we will begin our journey as he gets his first dose. We are fighting. Thank you all for your support and your concern.