Initial Surgery

Summary

I had my surgery yesterday in which the surgeons at Kaiser removed some of my earlobe (in order to remove any additional melanoma) and 4 lymph nodes (in order to biopsy to understand if the melanoma spread). The surgery went well and I feel fine. I'm not going to post any photos for the time being, I'll wait on that until I look a bit more presentable.

Before Surgery

I went to Kaiser at 11am. There was a bit of a mixup, I was supposed to get nuclear medicine imaging done first before surgery so everything ended up being delayed by about an hour.

I went to nuclear medicine and they injected my earlobe with some radioactive liquid, a radiotracer. That tracer then percolated from my earlobe into my local lymph system. I then had nuclear medicine imaging where a machine scans you for the gamma radiation coming from those radiotracers. An interesting thing about this is that the process takes a long time. 15 minutes in my case, a giant device slowly moved around my head scanning/detecting.

I then went back to pre-op surgery, got rid of my clothes and got into a gown, got an IV line put in, some leg massage cuffs (prevent blood clots), blood pressure cuff, oxygen level finger light scanner, had a brief chat with the anesthesiologist, my surgeon, facial reconstruction surgeon and one of the operating room physicians (I think) and got wheeled into the operating room.

Surgery

The operating room had a counter with computers, a big display, and the other stuff you'd expect (lights, operating table, etc) as well as Rock With You playing on the radio. The surgeon and his assistant were looking over the nuclear medicine imagery of me on their computers. I got moved onto the operating table. Everyone gathered around me for the "time out" where everyone goes around and says to each other what they're going to be doing. The anesthesiologist had me breathe in some big oxygen breaths in a mask (I imagine to bridge the time between when the general anesthesia hits via IV and when they intubate me).

I was pretty calm, elevated heart rate I imagine but generally fine, not much anxiety.

The whole thing from being wheeled into the operating room and the general anesthesia taking hold must have been a couple minutes, a short time.

I remember having a short dream about some medical procedure (not this surgery, something else) and feeling happy about how well it was going.

Recovery

I woke up in surgery recovery a moment later. Hours had passed (The surgery was planned for 160 minutes) in surgery and I'd apparently been asleep in recovery for 40 minutes.

My memory of the subsequent 20ish minutes finishing up in recovery is pretty good but a bit hazy.

Likely due to a combination of the delay with the nuclear medicine mixup, me being asleep in recovery for 40 minutes and it being 5pm on a Friday, all the doctors had left. Thankfully my surgeon had earlier called Kris and shared some info with her on how everything went.

I got a little urine bottle to pee into (didn't feel up to stumbling to the bathroom). Nurse helped me get unplugged and undone from everything. I got my clothes on somehow, I think I put them on, just slowly. Got out of the bed and into a wheelchair and got rolled out to the curb to meet Kris.

In that I'd been getting IV fluid for hours, I got to the car and then told Kris she'd need to help me walk back in so I pee again. We went back in and I relieved myself. Went back to the car and drove home.

No nausea (sometimes a side effect of general anesthesia) minimal pain (maybe 2 out of 10).

So What Did They Do?

Here's what I've pieced together (because I wasn't conscious during surgery) from what my surgeon told Kris and from looking at myself in the mirror after.

For some reason my surgeon didn't end up taking as much of my ear as he'd planned. The plan was for 1cm around the site but he decided to take less. So all I'm missing at the moment is the lobe and a section distal from the lobe (seemingly all cartilage is still there and intact). The biopsy of what they took will show the margins of the melanoma and either confirm they got it all or that they didn't and will need to take more.

They took 4 lymph nodes out and my surgeon said they looked fine to the naked eye, but we'll only really know what's up after the study is done. Prior to surgery he said it typically takes 7-10 days to get results back.

It appears as if they made a single 4 inch wide horizontal incision in my lower neck to go for the lymph nodes (and a few small ones right up and around the ear). I'm guessing though since I don't know exactly what they did.

It looks like they'd prepped my right ear (the good one) to take a piece of cartilage in order to "bank" it near my left ear for the purpose of later reconstruction, but they didn't end up doing that. I don't know if this was driven by the fact that they ended up taking less of the left ear than planned or if it'll happen at another time.

Some nerves to the skin around my neck were affected as there are sections that are now numb. The same thing has happened to me in the past from motorcycle accidents. In those cases I got feeling back after a few years to the section of skin that I'd lost feeling for.

So I have stiches on and around my ear and along that neck incision.

Back At Home

I got back last evening after Velle was asleep (Kris's mom was kind enough to cover for us), had some food, hung out with Kris for a bit and then tried to go to sleep. Turns out sleeping under general anesthesia counts just like normal sleeping so it was as if I'd had a 4 hour nap during the day (I didn't get to sleep until midnight).

Pain has remained 1 or 2 out of 10. I don't get to shower until Sunday night/Monday morning but I'll live. Throat is almost entirely recovered from intubation yesterday (some roughness, coughing a bit, nothing big).

Got the adhesive off of one of my eyelids (they tape your eyes shut). Still have some of the gunk they put in your eyes to protect them left over in my left eye. I'll have to see if I can think of how to flush that without a shower.

So now I'll hang out and heal up and wait to hear back about results.

Gene’s Health

This post will go into some personal details about my health. It may be a bit of a bummer or include details that may be gross. Don't feel obligated to read everything, this is only if you'd like to know more.

Backstory

Back on June 2nd, after Kris noticed a new odd mole/aberration on my left earlobe, I contacted Kaiser, my healthcare provider, to ask them what I should do. Kaiser scheduled to have me come in so they could take a photo of the mole. 6 weeks later on July 13th I went in and they took a picture of it to be looked at by a dermatologist. 2 weeks later on July 28th I came in and my dermatologist cut the mole  off in order to biopsy it.

2 weeks after that on August 11th the biopsy results came back as being malignant melanoma, a kind of skin cancer. The skin cancer was of an intermediate risk based on how deep it was. I learned that I would need to have surgery to have my earlobe removed and to have a sentinel lymph node biopsy to determine if the melanoma spread from the initial tumor to the lymph system.

My Initial Response

Learning of this was a very mentally challenging experience. I've not had much mental trauma in my life, haven't had to wrestle with much in the area of losing loved ones. The last bout I can think of would have been relationship trauma (being dumped, that kind of thing) in the late 90's. I feel very fortunate for having been so trauma free.

Upon learning the cancer news I, for some reason, skipped straight ahead to presuming my own death was imminent and struggling to process it. I couldn't focus on anything and just felt like I was in a cyclic state of shock. I wasn't sad, just shocked. I kept thinking about what my dying would mean for Kris and Revelle, what would happen, how they would manage. A minority of the time I found myself both feeling grateful for having had a pretty great 40 years and at the same time feeling very frustrated to get kicked off the ride half way through.

Over the past 2 weeks this mental lock has tempered a bit and my days feel more like when you're driving and the sun is low in the sky and you have to look to the sides of it to not have it blinding you. Part of this looking around it does however prevent any kind of long term thinking. My focus has narrowed to only the things going on right now. I can't really think about anything long term, most likely because I have an underlying sense that I don't have a long term.

Really, I'm just in a waiting state as, until the biopsy of the lymph nodes, I don't really know what situation I'm in.

What Does This Mean

By my understanding there are three categories of outcomes which we'll likely discover in the next week, after the surgery and biopsy. With those results I hope to have some statistics about what I should expect in regards to survivability. My speculation below about survivability is based on generalities that I've read about, not my specific situation. I should have a more accurate sense post biopsy.

Best Case

No cancer is found in the lymph nodes. I lose an earlobe and have it reconstructed through the magic of science. I stay vigilant for a few years to see if I detect any change in the skin or lymph nodes around my ear. This ends up being a bullet dodged and hopefully an inspiration in regards to the fleetingness of life.

Medium Case

Cancer is found in the lymph nodes but through some means it's determined to have stopped there. I have lymph nodes removed  and we see what happens over time. By my understanding, this scenario involves a very real chance that I won't survive.

Worst Case

Cancer is found in the lymph nodes and through some means determined to have moved elsewhere in my body. I undergo immunotherapy (an alternative to chemotherapy) to try to fight it. By my understanding, this scenario is one where I only have a slim chance of survival.

What's Next

I'm going to talk about some details about surgery so feel free to skip if this kind of thing grosses you out.

Day after tomorrow on  August 27th I'll have surgery in which the surgeons will

  • remove my earlobe and lower ear in order to remove any potentially cancerous flesh
  • remove a few lymph nodes for purposes of biopsying

It's possible that in this process they will find indicators of cancer in my neck in which case they may remove more lymph nodes.

If things go well and all they take are the earlobe and sentinel lymph nodes, the facial reconstruction surgeon will also take a small piece of cartilage from my right ear (the good one) and implant it near where my left ear lobe was. He'll do this to get blood vessels to perfuse into the cartilage over the next 6 weeks while I heal. This piece of cartilage will then be used in a subsequent surgery as a framework to rebuild a faux ear lobe using tiny skin grafts from nearby combined with the piece of cartilage.

If things don't go well, they may need to reconstruct an earlobe without cartilage or defer reconstructing it for a month.

I'll then come home and recover from surgery. Then some time after that I'll get word on what they found in the sentinel lymph nodes.

I'll meet with a therapist next week to potentially get some help with the mental side of all of this.

What Do You, The Reader, Do

I imagine people who know me will, upon reading this, be unsure what they should do. I would if I were reading this from a friend of mine. In short, you don't need to do anything. I know my family and friends support me. It's all good. You're welcome to share this news with whoever you wish.

I'll endeavor to post updates on my blog so that folks who are interested can keep abreast of what's going on without me push notifying people through email. If you'd like to get emailed when there are new posts, it looks like you can sign up for a https://blogtrottr.com/ account and configure it to watch the feed for this blog which is https://cs.cementhorizon.com/feed/

Equitable Partners and the CCPA

October 20th, I got a text message from an unknown number.

Gene, this is Daniel Greenfield with Equitable Advisors. We are a small wealth management firm in SF, reaching out to Mozilla employees to schedule a 10-15 min virtual meeting sometime next week where we can introduce ourselves, and see if there is any value we can bring regarding individual wealth accumulation/ retirement/ or college savings plans/ tax efficient saving/ or just overall financial planning. Please let me know if there is a date and time that works best for you! Have a great day

I felt like I was in Glengarry Glen Ross, it was exciting. At the same time I was bummed out that of the many channels for spam to reach me, text messages were now one (I previously have very rarely if ever gotten text message spam).

I searched for the guy's name and company and found that he was a newly minted stock broker as of October and was apparently cold calling (cold texting?) people, maybe everyone at Mozilla.

I went to his financial companies website and found that, now with the California Consumer Privacy Act in place, Equitable had to tell me where they got my information from, what they had, who they'd sold it to, etc.

I contacted their customer privacy department and asked for this information. I mentioned I was especially surprised to get a commercial cold call from a company I've never dealt with given that my number is on the National Do Not Call Registry and that sending this kind of text message violates the Do-Not-Call Implementation Act of 2003.

A few months later and after some back and forth I got this reply today

After analysis we determined the information was collected from a service called Zoom Info which is a data aggregator firm. You can send a request to them to delete your information from future use.

Data that we had about you:
Category:

  • Identifiers
    Elements:
  • Name
  • Address
  • Phone Number
  • Email Address

We have reviewed our processes and confirmed that the Financial Professional should not have texted you to the number you have listed on the Do Not Call Registry.

We have taken the following actions as a result:

  • Removed your information from that Financial Professional
  • Provided additional training to the Financial Professional to ensure no re-occurrence of this type of contact
  • We are providing a communication to ALL Sales, Financial Professionals to ensure that they understand and adhere to the DNCR exclusion process

We apologize for any concerns or issues this may have caused you.

I went and had zoominfo remove my information and, assuming this works, am glad that the CCPA exists as without it I imagine this process would not have been as straight forward.