Suddenly, Things Are Different

I haven't been posting very actively on this blog or on Twitter, and this is because I am processing some news I got last week. 

My life partner had a nodule on her back. At first, it looked like a shiny papule and I thought it was a basal cell carcinoma so I didn't call the dermatologist right away.  Within six weeks, it had doubled in size, and then it took another five weeks to get an appointment. Our dermatologist took one look at the nodule, which was now quite large and melanotic, and did an excisional biopsy. He thought it was probably a squamous cell carcinoma, but the pathology told a different story:  melanoma.

Pathology from the biopsy revealed a 10mm tumor with evidence of microscopic ulceration, two poor prognostic signs. Right now, we're in the process of arranging for a sentinel lymph node mapping and a wide excision. After that, there will have to be an oncology consultation to see if there is any role for adjuvant therapy with interferon-alfa or radiotherapy.

We've been through some health issues in the past, but nothing life-threatening. Now suddenly we are facing a vast, malignant uncertainty. In an effort to ground my understanding of what is happening to us, I've been researching melanoma and its prognosis. This tumor is at least IIC and perhaps IIIB, depending on the outcome of the sentinel node mapping. Apparently there is a five-year survival rate of 45-67% for IIC, and 29-65% for IIIB. It is hard to grasp wide ranges like that, but what I take away from these data is that there is a 1-in-2 or 1-in-3 chance that her life may end in the next five years.

All the other information--about cell morphologies, lymphatic spread, most common metastatic sites--tends to blur around the edges, even to my medically-trained mind. Because in this situation, I am not a doctor, I am family, I am an individual person who is as terrified about the development of a terrible disease in someone I love as any person in the same situation. And terror is not an exaggeration. I haven't been afraid of anything in many years, and now I am.

So I have been doing what I do when I am afraid and anxious: a little retail therapy, a little reality TV, and some fearsome rearranging of furniture. Eventually this stage will evaporate and I'll need to find some long-term coping strategy. Recently I have reaffirmed my identity as a writer, so--with my partner's permission--I have decided to write about our journey on this blog, or--to be specific--about my journey as a family member of a person with a serious disease, a family member who just happens to be a doctor. I anticipate a lot of growth and challenge during this journey, and I believe this is the kind of experience doctors--people--need to share. So look for a new category called The Melanoma Chronicles on this blog. And don't worry--I don't plan to let it take this blog over completely.

Image in the public domain.

Comments

[geena]

Very sorry to read this news, and I'm sending you and your partner good thoughts.

This post encouraged me to do something I've been meaning to do for a long time.

[The Happy Hospitalist]

Find comfort in those around you.

Happy

[CountryMidwife]

Many prayers for you both along this hard journey.

[Liana]

I'm so sorry to hear this. Sending you and your family all of my positive thoughts and wishes.

[Heather]

Lurker here sending out good thoughts to your partner and you.

[Patricia]

I'm thinking of you both. This gives us all a healthy reminder what Thanksgiving is all about. Somehow your karma must help you, all that you have done for others... my thoughts and prayers are with you both. Patricia

[dragonfly]

Sorry to hear that. Will be praying for and thinking of you and your partner.

[Shiri]

Thank you for being so brave as to tell us all about this. I'm so sorry to hear this news. Wishing you all the best in luck and please do keep telling us the news. (Yes, I'm a random used to be lurker, but I thought I had to comment at this point.)

[chantel]

I'm so sorry. :( I think I need to make an appt to have a suspicious spot checked. This post really gave me the kick in the rear I needed. Blessings to you both.

[Peggikaye]

My prayers are with you both!

[spynster57]

I'm so sorry to hear this! I work with 2 melanoma survivors, one diagnosed 25 years ago and one 12 months. I'm glad you recognized the seriousness and didn't wait any longer to be seen. Best wishes to you both!

[buckeye surgeon]

Damn. Hang in there. Hope everything works out.

[Kelly]

So sorry Theresa. Don't know what else to say.

[Medstudentitis]

I am so sorry to hear your bad news. I'll be thinking of you both. I love your blog and, although I would hate to see this happen to anyone, I especially hate to see it happen to you.

[Cy]

So sorry to hear this.

There's a deep normalizing effect, for me, in talking about treatment with others who are in it. When I meet somebody who is on the same chemo I'm on, or who had the same surgeries, has the same port-catheter, has it worse than I do or has it easier than I do, it puts half of IT on another shoulder. Sits just right for a minute, maybe an hour. Even the phlebotomist doing my blood draw, who is doing vitamin C treatment instead of chemo - even this sharing helps. I highly recommend other cancerous shoulders, in addition to those given in non-cancerous love and support.

[Gillian Chan]

News like this really shakes the foundation of one's world. You both are very much in our thoughts and you know if there is anything we can do, just ask.

[enrico]

Theresa, I'm so sorry for this devastating news for your partner and you. I don't have much to add that hasn't already been said; just know my thoughts and prayers are with you both. You are no stranger to sharing intimate details of yourself online, but this is understandably different. I'm glad you have decided to share, because we're here and want to support.

[Bruce]

Wishing you strength and plenty of good news in the future. Take care.

[doctorjen]

Wanted to add my well wishes and support for you and your partner as you go through this scary situation. I'm glad you'll be writing about it as you go along - both because I hope it will be therapeutic for you and because those of us who love your writing will get a glimpse into your journey.
If there is ever something a random stranger in blog land can do for you, don't hesitate to ask . . . In the meantime, I hope you can feel concern and support and love through the screen!

[Another Kim]

Best wishes to you and yours in this scary situation. :(

[Bianca Castafiore]

Thank you for being willing to blog the experience -- you will be helping lots of people, more than you will ever know. May you and your partner find comfort, peace, health.

[Robin]

Theresa, I am sorry to hear this. I wanted to share a good outcome. My father had melanoma 7 years ago on his right, upper arm and so far has beaten the odds. I went with him (along with my mother) for all of his testing, surgery, etc. His was a IIIB. It sounds like your loved one is in a similar stage. My dad is 71 now, and out-working most 40 y.o.'s.

You and your partner are in my prayers. I care.

Robin

[DrCris]

Sucks, Theresa. You are in my thoughts and prayers. Make sure you let me know if I can help in any way. And make sure you start buying the full fat extra butter microwave popcorn to watch with the reality TV shows, ok?

Cris

[Doctor Anonymous]

Thoughts and prayers with you both during this difficult time.

[Medstudent]

I'm sorry to hear your bad news. I will be thinking of your and your partner and hoping for the best.