This year started off a little rough.
My last blog explained that I went to the oncologist and he ordered a CT scan. Shortly after that my whole family and I came down with the flu. After recovering, my back started to ache. I blamed it on shoveling snow and just tried to stretch it and rest it as best I could.
But the pain started to get worse. It moved to my sides and my abdomen. I figured it was something more than just pulled muscles, but I tried to power through. Eventually it got bad enough where I had to leave work early and couldn’t make it downtown anymore.
So, I decided to call and schedule that CT scan.
Well, the results show cancer is growing again. This time the tumors are in the lymph nodes, with the majority being in the abdomen area. The tumor cluster is causing a number of issues including intense pain, digestion discomfort and a partial blood clot in an abdominal vein.
This is Stage IV cancer.
I say that because It’s like I’m always prepared for this to happen. I’m never expecting it, but I’m prepared. It’s a tough mindset to explain. Unfortunately, I have to understand that once cancer reaches this stage, it’s tough to stay on top of it.
So… why is it growing?
That’s the million dollar question isn’t it?
The obvious answer is it never really left, but why in the past 60-90 days did my labs go from great to troublesome and over the last month my pain go from non-existent to needing narcotics to control it?
If I’m being honest, it’s because I let my foot off the gas.
Not intentionally obviously. But when everyday life and an anti-cancer routine collide, sometimes everyday life wins.
I was declared cancer free in July of 2016. I went back to work in September of 2016 after being off for nearly 18 months. I was back feeling useful, alive and like I was providing for my family again. It felt good.
Also, parenthood and life outside of work started up again. I didn’t have to go to Chicago every 2 weeks. I could relax and be a husband and father again. We could have fun, plan trips and think about the future. Life felt normal again.
Fast forward to April of 2017… I had a scan that showed a little lymph node growth but nothing major. My CEA jumped a bit and the oncologist in Chicago wanted me to start chemo immediately, but I just didn’t see the need for it right then. I decided to watch and wait and start really focusing on building the immune system. I don’t think this was the wrong decision, but there’s really no way to know.
We had a fundraiser and I started weekly acupuncture, IV Vitamin C and Alpha Lipoic Acid at this time. I also had an army of supplements as well as monthly blood draws set up. I felt great and for about 5-6 months I saw positive results on my labs. Maybe this is all I needed to do?
Unfortunately, it’s nearly impossible to keep that pace of treatment going forever. Weekly infusions started to become bi-weekly. I’d run out of some supplements and wouldn’t be able to order them again. HSA funds would get low so I’d go an extra week between infusions. Work projects started picking up so I’d have to miss some acupuncture appointments and treatments. I figured because I was still getting treatments every other week, I was still okay.
This cancer was growing slowly since I was declared cancer free. However, I do think everything I was doing so religiously was helping slow it down drastically.
This is the hardest thing about cancer… it takes over everything. Your life becomes healing cancer. It’s exhausting. And the routine of it can become depressing. So many times I wish for us to have a simple life. It’s definitely not easy.
So, long story short… I’m in the thick of healing cancer again… and while we’re still hopeful, we are scared too.
What’s the Game Plan?
As I mentioned above, I’m in a lot of pain. Before this past Thursday, I hadn’t slept well in about 4-5 days. I was miserable. Well, that’s due to the tumor load pressing on my abdominal area. The oncologist prescribed me some low dose narcotics and thankfully they’re doing the job. I actually have to break them in half because I’m way to sensitive to pain medicine.
So we have two pressing issues, enlarged lymph nodes and a clot. I’ve been prescribed a blood thinner for the clot as the doc said no surgeon will go in an remove the clot in my current state. So hopefully it does it’s job and helps blood keep moving. This partially clotted vein is part of my small intestine, so I need it functioning well.
But what about the lymph nodes? Well, I’ve been prescribed Stivarga, which is a targeted therapy that won’t kill healthy cells but should shrink the tumors in the lymph nodes. The good news is the pain will reduce if the nodes start shrinking, so I’ll know if it’s working. The bad news is this medicine costs literally and arm and a leg. I’m working on getting co-pay assistance and hopefully they’ll cover it all. More bad news is my insurance company says it’ll take about 15 days for prior authorization to go through. Hopefully the drug company can send me out some samples in the meantime.
I consulted with my naturopath after my oncology appointment and we’re all in agreement here. We need to shrink the lymph nodes quickly. I’m in quite a bit of discomfort and it’s only going to get worse if I don’t address this now. I’m hesitant to take this drug, but I’m nervous to wait and try something else.
I’ll still be doing IV Vitamin C as well as trying IV mistletoe now to try to boost the immune system. I’m also getting back on my supplement doses religiously.
The Hardest Part…
Heather and I had two appointments on Thursday. The first was with my new oncologist at Beaumont and the second was with my Naturopath at Emcura. The oncologist took his time to explain everything to us and go over all the options available to us. When he left the room I looked at Heather and she was crying.
“This is it. He says you’ll be on this until you aren’t. He said it’ll only get you maybe two more years.”
You see, the oncologist told us a story about a guy who had great success on this drug. He lived for almost two more years on it before he had an “unrelated” heart attack.
THIS is cancer. This is the mindset. Buying more time. It’s not smiling faces without hair you see in ads. Or people ringing the bells declaring they’re cancer free. The face of cancer is treatments leading to side effects leading to heart attacks and other complications.
After we made it back home, we talked and cried some more on the couch. Fears about not being able to raise our kids without me, especially Milo, came to the forefront of her head. Then we started to talk about living wills and how exactly she would be able to provide for her and the kids should I die sooner than later.
If you’ve never had to talk to your spouse about these things, consider yourself rich beyond your wildest dreams.
The Best Part…
Having the naturopath appointment second was exactly what we needed. Fear is to oncology as Hope is to Jen Green. While we all agree that the conventional treatment is the best idea at this time, there’s no mandate that says we can’t take a break from the medicine if we see an amazing result. Lets say best case scenario happens and in three months my CEA is 0 and the lymph nodes are gone. I can stop the medicine and focus again on the immune system and see what happens. I could find remission again for another year or two.
But if I do find remission, recurrence is likely to happen again. It’s stage IV after all.
How am I feeling?
Honestly, I’m really frustrated right now. Can you believe I’ve never had pain (other than surgical) in three years with cancer? I’ve never felt like I’ve had cancer. Now I know what it feels like to FEEL cancer. I know what it feels like to be scared of my own body. I don’t know if I trust it right now. But I do believe what I’m doing is what needs to be done.
I don’t want to die from this.
I won’t give up.
I know I can still be a Radical Remission case.
I’m still greater than cancer.
And I am wonderfully made.
As I’m sitting here thinking about this, I’ve realized that for the past three years I’ve been trying to control cancer. And for three years I haven’t found a way to do that. So I’m giving up control.
Please keep both Heather and I in your thoughts and prayers.