The Whole Truth

presenting
I don’t want to write this.

I’ve been avoiding writing this. Mostly that’s because I can’t sit with one thought or one emotion long enough to form a coherent thought. The only consistency in my life right now is the fight in me. I’m fighting for his life. For our life. And I’m sorry for those of you who have been caught in the crossfire. You see when fighting this hard everything looks like a potential threat. Yes, even you. My mind is wild and the adrenalin never stops pumping. Hours after my normal bedtime I lie awake and I can feel it coursing through my veins. I am in a constant state of “flight or fight”. I am hyper-attuned to every sound, every movement, every breath.

And so here I am. I feel the need to let everyone know just exactly what is going on. I do it with reservations as all we want right now is to be normal. To be treated normal. And so that being said here it is.

Many of you read my post a few weeks ago about our “brush” with cancer. If you missed it here is the link. Well it seems that our “brush” has turned into a full blown collision. Although the scans looked great, the surgery went well, and we thought we were in the clear we are not. We received a phone call from the surgeon as we were enjoying a family vacation at the beach. We were told that in fact the cancer had spread to 3 out of the 4 lymph nodes that had been removed.

This means we are stage 3a melanoma.

This means we have spent countless more days in waiting rooms and exam rooms. This means we have traveled over 670 miles in the last 3 days visiting 2 different specialists at 2 different major facilities. It means there will be another surgery this week to completely remove all of the lymph nodes in the effected area. And lastly it means some sort of chemotherapy.

The problem is that the stage we are at does not have a good option for chemo. If we have just one more cancerous node then we will qualify for a clinical trial with some very promising drugs. But if we have just one more cancerous node we are put into a 40-50% survival bracket over the next 5-10 years.

If we stick with the current standard of care we will endure a year of chemo therapy with brutal side effects and not much of a reduced risk. Or we could do nothing and play the odds. There is no way to know if there is still cancer in his body. The surgery may remove it all. But that’s just it. There is no way to know. No way to measure.

We are gambling with the highest stakes possible. And I hate gambling. I like numbers, spreadsheets, statistics, and clear answers. With melanoma there just simply aren’t any answers. Our physician told us yesterday that “the only predictable thing about melanoma is that it is unpredictable”. 

There is no way to wrap this up nicely and put a bow on it. There is no resolution at this point. I am left hanging. Unanswered and unfinished. This is where we are.

It’s an uncomfortable place to live in but it’s what we have. I find myself constantly being reminded that things could always be worse and that we have so much to be grateful for right now. My extended family suffered a sudden and untimely death yesterday and it made me realize that however bad it is for me it is not the end. There’s so much more fight to go and I am ready for it (most of the time). 

So this is the truth. The real. It’s not funny (as I prefer to be) and it’s not heartwarming. But it is life in all it’s vulnerability and honesty.

19 thoughts on “The Whole Truth

  1. Merck’s Keytruda is a drug to explore. It’s very new, indicated for late stage melanoma if I remember correctly. Clinical trial results were so strong the FDA gave early approval. I’m not a doc and I have no relationship to Merck.

    1. Yep we are looking at Keytruda, Opdivo, and Yervoy. But they are all approved for stage IV right now and so we probably can’t get them covered by insurance. However, there are several clinical trials going on that we may be able to take part in to gain access to one or all of these drugs.

  2. This is David’s mom Cheryl. Bruce and I are keeping you and your family in our thoughts and prayers. Del sent me this and I hope I did this correctly. I’m only so so when it comes to computers. God Bless you all.

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