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Polluting the internet since 2004
I have some very talented co-workers.
First up: a get well soon card hand-crafted by Danielle. Laser cut and signed by a lot of good folks at work. The rest of you are dead to me! Just kidding
Next: Twilio had a Painting Night at Wednesday Night Dinner last week. Look there, in the upper right. See that thing with a halo and wings?
Lets take a closer look at what Nora left me. And artists rendition of good ol’ lefty headed to testicle heaven.
I don’t think I could have asked for anything better than these two gestures… They’re both just simply fantastic.
Honestly, though, I’m really smitten that all of my co-workers are thinking about my testicles.
Got in to see an oncologist yesterday. Not the oncologist that will be administering my chemo, but the first Oncologist that I could get in to see and get more information from.
Stage IIC, which I’ve also seen referred to as “Bulky Stage II”, means:
My largest lymph node is approximately 5.7cm across (almost 2 1/4 inches). They’re normally 1cm in size. My untrained eye (with the help of the oncologist) noticed at least 3 nodes larger than 5cm. More at various other sizes. That certainly explains the dull pain and discomfort in my abdomen.
For reference, while I had multiple small tumors in my testicle, the largest actual cancer tumor size was less than .25cm. Its weird to think how differently the tumors in the testicle and metastasization in the body can be so different.
While I have yet to see the oncologist that will be administering my chemo I’m most likely in for a 4-cycle regimen of a 2-drug cocktail. Each cycle being 3 weeks with the first week being 6 days of drug administration with 2 weeks off. There’s likely to be a mid-term examination at which point we’ll evaluate whether a step up to a 3-drug cocktail is necessary. I want to try and avoid the 3 drug cocktail to begin with due to the increased risk of long-term respiratory side effects.
Not to jinx it, but an RPLND is currently not on the table. If the lymph nodes respond well to the chemo then I’m free and clear of the extra surgery. If not, well, shit…
My plan is to take the full 12 weeks as a leave of absence. Details pending a meeting on Monday with HR. If I’m feeling well enough during the off weeks I may ask work for some small item or bug off the backlog to give me something to feel productive, but that’s not a certainty. The wife is going to, for the most part, do the same.
I guess the reality of this is still setting in. Hence my writing this at 3am while I cannot sleep. I’m glad that I now know what I’m in for, but at the same time I’m now realizing that this is actually happening. Before it was just speculation, now its a reality, and I’m starting to get scared. I know that getting scared doesn’t do me any good. It’s an involuntary reaction that I’d love to do away with.
At the risk of sounding all “woe is me”, there are a couple of things that have particularly bad timing here. I just need to vent a little about:
All that sounds petty considering the larger picture. But the realization that daily life is still happening is a weird thing to take in. Between my ears my world has stopped. But everybody else goes on. That’s tough to think about. And also thinking about how I maintain a connection with that world is tough. I’ve never been one that finds it easy to ask for help or finds it easy to reach out to others, even if just for a little human contact.
I think a crash course in re-learning how to interact with those at work that I consider to be friends, while not being at work, is coming. My family, and my wife’s family, are all in Colorado. I’ve got some family here in California but they’re scattered. My social fears and insecurities are definitely going to be tested here. My parents are talking about coming out and visiting, and I’m looking forward to that, but that’s just 2 of 12 weeks.
This is going to put strain on my marriage. It won’t kill it, I’m confident of that, but it’ll definitely test us both. In our 15 years of marriage we’ve been through some interesting struggles and always come out stronger for it, but nothing on this scale. And nothing that requires one to actually take care of the other. If I get through this without being hit by a frying pan I’ll be amazed
I finally got the pathology back on the removed nugget today. While the mass found within the lil acorn was not cancerous, it was a cyst, there is cancer. Type: seminoma.
So, course of action and diagnosis of the stage of the cancer is still to be determined. I do have enlarged lymph nodes and a small 2mm spot on my lungs, but as of yet nothing has been conveyed to me about what stage this might be at.
If I’m lucky, and I mean really lucky, the lymph nodes reduce in size with the removal of the rotten vegetable and I’m considered stage 1 and thus stay in a monitoring stage. If I’m not lucky the lymph nodes need some convincing and that’s where chemo and/or radiation come in. Worst case scenario is that the lymph nodes require removal. Nobody wants that. That’s an ugly surgery.
So. Still scary ’cause I just don’t have enough information to know what the next 4-6 months of my life are gonna look like. The single spot on the lungs is not a good sign, but at the same time it is inconclusive because of its size. Tomorrow is a meeting with an Oncologist and I’ll hopefully at least get a tentative timeline on what the next steps are.
It also appears that since Kaiser feels that it can adequately provide care here, and I’m sure they can, that a referral to a larger, specialized, cancer center is probably not in the books. Which is a shame with UCSF right here. I’ll be challenging that should this come to surgery as that procedure is not for unskilled hands.
Fortunately work is still being downright amazing. It’ll be new territory for all of us. I’m the fist employee to need long-term leave so what happens here will help shape company policy. I’m getting constant reassurance and positive feedback from those at work so I’m feeling really good, nay, I’m feeling damn lucky, about being able to tackle this without worry for my job. The wife is getting good support as well and will be able to be there for me should I need her without fear of losing her job either. With all the horror stories you hear about workplace instability at times like this I feel downright lucky about where we are right now.
Something that I’m not quite used to yet is fishing all of the information out of the doctors. My PCP is pretty good about being verbose, but everyone after him has been pretty dry on the information delivery. They’re more than willing to answer questions but I have no fucking clue what questions to ask… that and I’ve typically just been slapped in the face with something new that I don’t like as well as need to write it down so that I don’t forget it. I need a doctor that realizes that while I have this malady that I don’t have the foggiest idea of what is actually going on… and I don’t like that.
My left testicle was trying to kill me. He has since been banished from his sac. I also have swollen lymph nodes around my kidneys. It is still unknown if the cancer has metasticized. We’ll be keeping an eye on the lymph nodes to see if they respond to the removal of the testicle and I have a CT scan scheduled to see if there’s any indication that the cancer has spread further.
This all started last May. I had pain in my sac and in my lower back. The diagnosis was that I had a swollen testicle because of a kidney infection. I got the standard round of antibiotics and genuinely felt better after the treatment. But later the pain came back. Further diagnosis was that I didn’t have a swollen vegetable but a shrinking one. Alas, no better diagnosis was made at this time. At no point did anyone order any kind of radiology or ultrasound to look around inside.
Fast forward a few months of having tried another doctor to no avail and finally picking a new doctor at the newly opened facility near my house. Upon bringing the doctor up to speed his jaw almost hit the floor when he learned that at no point had anyone put me in for an ultrasound. So, I get one. And it sees lumps around the kidneys and on the testicle, but not with enough resolution for a diagnosis. Then an MRI which sees swollen lymph nodes and, fucking hell, a lump on the testicle.
Next step: surgery. That brings us to today. The folks at work have already taken to calling me The Uniballer.
So for now the future of treatment is unknown. Could be radiation, could be chemo, and might involve more surgery, an RPLND, if the lymph nodes are too far gone. We’ll know more this coming Monday after the biopsy, CT scan and pathology results come together. I’m back to work after next week but two weeks after that is when ongoing treatment should begin.
While I’m sure that Kaiser has a fine cancer treatment program I’ll be looking at other centers as a possibility. UCSF is right across the bay and has a good reputation for Cancer research and treatment. There are other good centers in the bay area as well. I’ve also been pointed to MD Anderson but they’re in Texas and will be in consideration if I need to undergo an RPLND.
Right now its just typical surgery recovery. Get help when standing up. Try not to cough. Get plenty of fluids and rest. And get plenty of naps because the pain meds only last long enough for a short sleep before I get woken up again. I’m pretty sure that I have a little phantom pain where my boy used to be.
I’m trying to humor my way through this but that only goes so far. I’ve broken down already both in fear of the surgery and recovery, and in anger that this even happened at all. I hope I’m over it now because its not very productive, but that’s probably wishful thinking.
My wife has been amazing. We’re only a week in to diagnosis and she’s already done so much. I don’t think that there will be enough opportunity to call out her contribution to the recovery effort. She’s talked me down, she’s let me be. She’s helped me up and down. She’s kept me on schedule when I’m too tired to remember. And this is the easy part… The hard part is yet to come. I’ll be leaning on her more than I ever have before and I know that she’ll lean back and support me. Fortunately she’s got good friends to help her as well.
I am also extremely lucky with my work situation. I have a good health insurance plan and Twilio is a truly, fantastically, wonderful group of people. The emotional and professional support that I’ve received so far has just blown me away.
And I am really grateful for the experiences of friends. I have a “wonder-twin” who lost his right testicle last year. He has been very open in sharing details of his ordeal. While he did manage to calm me down about the orchiectomy he has, in fact, scared me shit-less about the possibility of chemo.
I’m turning off comments on this site. I kinda need this to be an outlet where I can write freely, write badly, and not have to necessarily engage in conversation about my feelings. There’s plenty of places on the internet for engagement. I’m sure those will work out just fine.
Survival rates for ball cancer are some of the best out there. It has a well known path of progression and treatments of the various types of cancer are well studied. I doubt that I’ll present anything out of the ordinary or that anyone in the biz hasn’t already seen. Even after metastasization to the lungs and even to the brain the treatment rates are really high. So I have that going for me.
And get yer balls checked. I wouldn’t have found this before having pain. My tumor is within the testicle and I’d not have been able to find it by inspection. It wasn’t until it started hurting and shrinking that I had any indication that anything was wrong.