Hey! WordPress! How long has it been?!
Oh, a year and five months…I see you’ve kept track…
Look, I’m sorry about that, okay? It’s just that with everything that’s been going on I haven’t really had the time or motivation to update you! Oh, come on, don’t look at me like that! I’m sorry, WordPress! I tell you what, how about we do something right now, ok?
Here, this’ll make you feel better:
Who’s that, you ask? That is my 9-month-old son! And he’s adorable! And I love him more than I’ve ever loved any other human being on the face of this planet!
What’s that? Oh, no, no, still have a stent in the kidney, doctors are still deciding whether or not it’s worth it for me to have surgery to deal with the scar tissue in my back, still looks like I have a tube in my neck, and I still have a wicked scar on my chest, but life is good.
If you’re reading this, and you’re going through this awful disease, keep your chin up, friend. Keep your chin up.
So, here we are, 365 days (and a little, it’s after midnight, after all) since the day that would change my life forever. And oh what a year it has been.
The doctor says I’m in remission now. It’s an important word, remission. Technically it means ‘cancer free’, but the more I think about it, the more I realize how meaningless that phrase really is.
I mean sure, there may not be any cancer cells remaining in my body, but, really, will I ever truly be ‘cancer free’?
I still have a slight scar on my lower abdomen, I still have a scar on my chest, there’s still a divot on the back of my neck, there remains a small scar and a tube track on the side of my throat, and for chrissakes, I am still missing a testicle and I still have a tube in my left ureter to keep my kidney from closing shut.
There will never be a day in my life, from here on to forever, where I’ll need to be reminded about those three months in 2013 when I had cancer.
The hardest reminder of all to come to terms with, and I’m not sure I’ll fully grasp and accept the concept until that day comes, is the fact that when Emily and I become parents, I won’t actually be biologically related to any of my children. But I will be their dad, they will be my children, and I will love them with all my heart.
I will never feel like I am 100% cancer free. These are side-effects, if you can call them that, that will last forever. Remission? Great. Tumor-free? You got it! Cancer-free? Not quite.
This became a bit of a downer, huh? Don’t get me wrong, I feel great, life is going well, I finally got my iPhone, things are good! Just needed to get this off my chest.
Maybe in June for the Chemoversary we’ll have a party. Ok?
So today was the day that my port got taken out. Another step towards this all being over.
They offered it to me if I wanted to take it home, but I declined. I did get to look at it, though, and it was a lot smaller than I thought it would be. A small purple disc that was vaguely triangle shaped.
Since they had to go in the same place as when they put it in the surgeon basically cut out the original scar as an access so I wouldn’t have two scars next to each other. When he was checking my heart before we started he commented that it sounded like I had a runner’s heart. I was either not nervous or in really good shape. I said that after the past eight months this place doesn’t make me nervous anymore.
The procedure was easy enough, I think I was unconscious for some of it, but it was in and out. Now we go home and recover…probably with some xbox and Doctor Who.
Now we just wait for the next stent checkup and the ongoing scans.
So… Today was supposed to be stent removal day, sadly it became stent replacement day. The mass that’s still there, though it is scar tissue, is still large enough to cause a blockage in my left kidney, so new stent it is.
I have an appointment in a week, I presume it’s to discuss the new stent and what he did, then this one stays in for six months, meaning that just about a year since the first one went in, the second one will come out and we’ll check again.
Also my winky hurts.
I’ll explain the title in a minute, I promise.
Today was Dana Farber day. We got up far too early, yet not early enough, as we were late for our 9am appointment. Not that late, though, as they called my name for vitals just as we got there.
Sadly we had forgotten the disc of images in the car back at the T station, so Dr. Pomerantz only had the reports to go off of. He just asked us to mail the disc to him, and he’d call us if anything stood out that would change his opinion. Still, he said that the best course of action at this point looks to be no action at all. No chemo, no radiation, no surgery, just another PET scan in January or so, and more monitoring after that, probably a scan or two a year.
The biggest point was that from the post-chemo CT scan to the first PET scan the mass had shrunk. Cancer doesn’t shrink, cancer only grows. So while they still can’t say with 100% certainty, it is a very, very, very good chance that the cancer is completely gone. Plus he assured us that it’s very likely that at our next meeting our urologist will be able to remove the stent from my kidney, and he said I can take the port out at any time.
This was just the news we needed today, after some personal issues that happened earlier this week, but that’s neither here nor there in the context of this blog, so we won’t worry about that.
Because of the good news we decided to go out and splurge a bit on a celebratory lunch. Having just watched an episode of Iron Chef America the other night that featured a chef from Boston we decided to check out his restaurant, a tapas place called Toro.
Holy shit, you guys, it was amazing. I think it has ruined normal food for me. Marinated cheese, stuffed dates, tuna crudo, duck bacon, beef cheeks, grilled corn, and Churros for dessert. It was insanely good. Find this place and go there.
Tomorrow we meet with the surgeon at Lahey to tell him that Dana Farber says we don’t need him. Unless he wants to take my port out, that is. But I doubt that.
NOTE: I wrote this two days ago, but didn’t have wifi and didn’t remember to upload it until today.
So, today was the visit to Lahey Burlington to meet with the surgeon. Thankfully he said that he doesn’t think surgery is immediately the way to go, and after we get all the information from all the people we’ll be seeing we’ll make the final decision.
I did learn an interesting thing, though. Surgery, as always, is not without risk, but apparently my surgery would be slightly more risky because when you treat a seminoma with chemotherapy it becomes very sticky in regards to blood vessels. So removing it can be very tricky.
We meet again with the urologist on Monday, and then another trek to Dana-Farber on September 5th, then back to Burlington on the 6th.
Until next time.
Ok first of all, I want to give you a couple excerpts from my discharge papers from yesterday because they are ridiculous.
“Avoid close physical contact with family and friends on the day of your study, especially infants and children as they are more sensitive to radiation exposure.”
“If you breast-feed your infant or child, you should wait until 24 hours after your PET scan before breast-feeding or expressing your milk for use.”
My favorite section is the “General Health Information” because it has nothing to do with the PET scan at all:
There is no doubt that seatbelts save lives. Every day people not wearing seatbelts are more severely hurt in crashes. Buckle up to reduce your chances of severe injury.
If you smoke, this is your greatest health risk! This is a risk that you can control. The facts are clear that cigarette cooking will shorten your life. Smoking can cause many illnesses along the way. If you need help to quit smoking, talk to our nurse or doctor.
Tobacco is probably the single most dangerous thing you can do to your health. Nicotine robs the heart of oxygen and contracts the blood vessels, which raises heart rate and blood pressure. If you smoke or use tobacco products, discuss alternatives with your doctor. The most important thing is that you continue to try and quit until you are successful.”
And then, on the third page, all by itself…
“If you do not smoke, or if you quit, CONGRATULATIONS! Keep up the good work!”
Seriously, emphasis not mine.
ANYWAY, emphasis all mine there, there is news, as promised.
The radiation oncologist called me this morning to inform me that my PET scan was completely negative. Not a trace of anything.
I called him back a little later, just to confirm, and asked “Does that mean I’m cancer free?”
He replied “That’s the implication.”
I’ll take implied freedom!
So, after just under five months of this thing, after surgeries and chemos and hospital bills and fevers and room service and cebaceous cysts and throwing up so hard I pulled every muscle in my torso it’s almost over.
We still have the appointment with the surgeon next week, but with the scan being negative it’s likely all I’ll need is just occasional monitoring of the situation. The radiation oncologist even said that the mass had shrunk a bit just since the CT scan a few weeks ago.
Then it’s just getting the port out and the stent out (really not looking forward to that bit) and we’re in the clear.
Hopefully for good.
So I got a voice mail from my urologist yesterday, he apparently had a long conversation with the laparascopic surgeon we were going to visit next week, and the surgeon thinks that, because of where the mass is, he thinks the better route is not laparoscopy, but full on open back (i assume) surgery.
Not exactly the news I was looking for, because I really don’t feel like getting cut open…again.
So, hopefully the PET scan I had this morning well come out in my favor and we can avoid this completely! I really don’t care if it’s scar tissue in my back, as long as it’s not cancer it can stay.
Also, since the doctor I’m seeing changed, the time of the appointment changed as well, so next Tuesday my day is completely free. Next Friday, though, is now going to be a bitch.
Speaking of the PET scan that was a fun little experience this morning. The hospital apparently doesn’t have the equipment, so this trailer comes by once a week that has the imaging stuff in it. They brought me out to the trailer, took my blood sugar, and then dosed me with flouridated glucose. Radioactive blood sugar. I then had to sit in a chair and move as little as possible for about half an hour while it circulated through my body.
I took a nap.
They then took me to the special radioactive bathroom. I swear to god I’m not making that up, there was a sign on the door and everything. I went pee, since the isotope is flushed out through my kidneys, and then it was back to the trailer to lie on a…I don’t even know what to call it…a slab with my arms above my head and my pants around my ankles, under blankets mind you, for another good 25 minutes while this machine slowly scanned the path of the isotopic blood sugar through my system.
Then I got to go home, where I watched RiffTrax Reefer Madness, ate a small lunch, and got ready for work, which is where I am now.
The discharge paperwork for a PET scan is awesome because it basically says “LOOK OUT! You may still be radioactive!” There are lines about not getting too close or intimate with friends or loved ones, and a line about not breastfeeding for 24 hours.
So, yeah, HUGS FOR ALL MY ENEMIES!
So I realize I forgot to update after the last couple appointments, and now I’ve got another to add to the list, so lets do this.
Since the chemo is finished we’ve been put back in the ever-capable hands of my urologist. Since there’s still a mass in my back he decided a couple things. First, he wanted us to see a radiation oncologist, since radiation therapy would make sure that if there was any cancer left in the mass it would be gone for good.
Well today we saw that radiation oncologist, and he said that since I was so young and there was such a good chance that it’s not cancer anyway, that he didn’t want to put me through that, and put me at greater risk for more cancer later on down the line.
So, I’m getting a PET scan. They’re gonna shoot my blood full of stuff that, when scanned, will show up brighter in areas where there’s some kind of activity that means cancer. Yeah, I was really tired this morning, I can’t remember all the details. Fluorescent blood sugar or something.
So, yeah, there is still a chance that I an avoid surgery. More on that next week after we visit the laparoscopic surgeon, and a very very good chance that I don’t have to be shot full of nuclear radiation.
The good news is that the bad news isn’t really that bad, it’s just news.
Imagine a vertical roll of bubble wrap. When you take some off the roll, it gets thinner but maintains the same height. This is basically what happened to my tumor. It reduced in width from 8cm to 2cm, but it is still about 8cm long. It could just be scar tissue, but it could still be cancer, or it could be something called a teratoma. Which is a bizarre kind of tumor that has been known to grow teeth and hair in people’s backs.
So there’s that.
So, we have an appointment with a radiologist that will probably lead to a dose of radiation. If it shrinks after that then it was still seminoma and we’re good. If it doesn’t then we meet a laparoscopic surgeon who decides if he wants to go in there or not. If not we have two options depending on why not. Either we wait a few months and scan again or we go to an even more experienced laparoscopic surgeon in Indiana.
So there’s that.
Are we happy about this? Not really. Is there anything we can do? Nope!
It’s the disease that never ends
Yes it goes on and on my friends…