Oncology. I could have gone easily 10 more years not knowing what this word meant. What it’s code for. What it really means. So far I’ve been saying: my situation, my thing, because of the (you know), but never calling it by its name. I have an oncological problem. Is that thing? Is that what I should be saying? I’m in the oncologist waiting room with everyone easily older than my mom. If it weren’t for the lump and scar on my neck maybe they would think I was here supporting her. But she was there supporting me because the appointment with the oncologist was mine. I’m the one with cancer.

Before you feel that sinking feeling, let me tell you, I’m lucky. I have been given the best medicine someone could possibly receive in this situation: hope (and chemo, lots of chemo). Ready for a timeline and specifics? Here goes.

Fall 2016- Spring 2018: Skin started itching randomly. It started off as a subtle inconvenience, but after being told I had bed bugs, to having peanut allergies, to the final diagnosis of eczema, I was ready to get a subscription membership to lotions and live with eczema. This itch was now persistent and kept me up all day, all night. From about 4am – 9am it would subside and I could get a few hours of sleep in before being woken up by itching. The scratching causing obvious blemishes and gouges into my skin. This was no way to live.

April 2018: While preparing to host RAW: San Diego I was getting dressed buttoning up my collared shirt to the top button as per usual. I noticed that my neck was much larger on one side, a very weird place for a lump. I scheduled an appointment with my doctor (Primary Care Physician). She had me go for a chest X-ray and come back the next day for results.
I still remember sitting there on the cold patient table with the crumbly paper (leaning awkwardly because they don’t even try to make those things comfortable with some sort of back to lean onto). It was one of the most vivid memories I will hold for the rest of my life. She said the words “mass”, “oncologist”, and “I’m sorry”. I saw my mom’s eyes start to water, and there it was again “I’m sorry”. What was she sorry for, I didn’t understand what it was she was telling me. Then it hit me, this could be cancerous. Could be, as in: it was, but she couldn’t legally say without further testing. But she knew. I heard it in her voice. I saw it in my mom’s eyes (my mom is a nurse, she knew what she was hearing). One of the medical assistants came in and got a referral to an oncologist quicker than I’ve ever gotten a referral for anything ever. This was serious.

May 2018: Testing. This was a month of testing, testing, testing. MRI, with contrast, without contrast, neck biopsy, bone marrow biopsy, PET CT scan, regular CT scans, labs, blood draws. So many tests. Each one telling us more of the story of what’s inside my body. What type of cancer, how far along, subtypes etc.. By the end of the month we had our verdict: Classic Hodgkin’s Lymphoma Stage IIIA. (I found out real quick what the heck a lymph node is and what they do for our body. I’ll let you wikipedia that as needed.)

My oncologist is really hip and has a mobile App called FollowMyHealth that I have access to all my test results, clinical summaries, etc. So I can read the report, but many times not sure what I’m reading, but I think it says I have about 13cm (5 inches) of cancerous activity in my mediastinum (chest area). That’s pretty huge. The stages of cancer refer to the spread to different sections of your body. So above shoulders is one area, chest is another area, abdomen and lower is another area, and in your bone marrow is the 4th. So I was classified stage three because there was cancer in my neck (obvi) and my chest, but also a few lymph nodes in my abdomen. I was cleared from stage four because the bone marrow was negative of cancer. This diagnosis was some great news as the prescription of hope was then able to be administered.

Hodgkin’s Lymphoma has a very specific, treatable regimen of chemotherapy drugs that have been proven with high percentage rates to put patients back into remission. (Non-hodgkin’s lymphoma is different, and has multiple subtypes that would have to be analyzed further before being able to know how to fight) With the positive reassurance, and a set plan of 6 doses of ABVD chemotherapy I prepared to fight cancer for the next 6 months. BTW, I still had the itch that was keeping me up at night. I’d come to find out they call this the Hodgkin’s itch, and I was told once I started chemo it would go away. You have never seen someone so EXCITED to start chemo than me.)

June 2018: Chemo starts. (Itch goes away, yay!) There are myriad chemotherapy drugs and cycles and rhythms for various types of cancers and body types. The ABVD regimen was to be administered via IV drip at the oncologist’s office for about 6 hours on one day. Then I would go home to rest for two weeks and come back for the other half of the dose. A full dose would be 2 days a month, one every other week. So this would put me ending the full 6 doses just before the holiday season.

November 30, 2018: My final dose. Had I gotten use to it? No. You never get used to chemo. It is like the worst hangover you will ever have. My bounce back from feeling crappy for about 4 days straight after receiving it started to become quicker. I would pick myself up quicker with the strength of family and close friends’ visits, random texts, prayers. It all works. Trust me, I felt the power of all of it. And after this dose, I would need that just one last time!

December 2018: PET CT Scan to check and see how the chemo worked. Results show a very small blip that the doctors are unsure if that is cancer or an example of why they say things are only 99% effective. Their reaction, let’s cut it open and see.

January 2019: I’m technically in remission, pending scheduling this next biopsy. Every day further away from chemo.

February 2019: Testing Part 2. Surgeon goes into the area above my shoulder (lower neck) (opposite side from the first lump) that the scan blipped. He samples the lymph node and the results are negative for cancer. But he tells me “when I was in there, there was a lymph node below that I couldn’t get to because it was close to a main artery, it looked suspicious. I would recommend a needle biopsy.” My oncologist sees results on paper as negative, “you’re in remission, let’s get into the final step of radiation”. And this is where I encourage everyone to be their own best health advocate. I said, look doc, the surgeon saw something, I feel like I should get the needle biopsy (as much as I dreaded the idea of getting invasively poked AGAIN, I knew I needed to be sure, for the long term). Needle biopsy results: Positive. I now had Refractory Lymphoma.

March 2019: There’s a plan for that. I just want to say thank you to all the souls that have fought and died in the name of cancer and have allowed progress, research and technology to get where it’s at. And the medical professionals who have dedicated years to learning and pioneering these tools we have available in 2018/19/and beyond. Because of these heroes I was given another dose of hope. This time the regimen would be called ICE. Heavier? Yes. Side effects? Same and stronger. Rhythm? 4 days straight of chemo for 8 hours. But at least I’d get 3 weeks off this time. And only needed to do this twice.

[Below Updated 6/20/19]

April 2019:  So after 14 rounds of chemotherapy drugs, my hair finally started to fall out. I believe I must have some pretty strong hair cells, although I think the doctor would say that “every body reacts differently”. I think I had been waiting for it to fall out for so long that when it actually did start to fall out I was surprised that it would happen at all. No, my hair did not just fall out overnight. I just woke up with my pillow looking like a barber had come in and done some trimming overnight with enough loose strands that I had to shake it off in the trash. I’d run my fingers over my head, as you do in a normal busy day, and a handful of loose hairs would just follow my hand off my head. This went on for about 5 days until the weekend came and I had made my decision. It was time to rock the cancer look. With my daughter and fiancée with me that weekend, I made them a part of the experience. It was important to do so, not just for me, but for them. It was a family event. It was fun. It was memorable. It was more emotional than I had expected.

Our bootleg family shaving was a success for bonding. But without the proper barber equipment, my scalp was still looking pretty patchy. I went to a barber the next morning for a clean-up and began publically looking like a cancer patient. I have shaved down to a “0” before, but completely bald was shocking. There is absolutely nothing inherently “wrong” or “ugly” with a bald head for any human, but as it wasn’t necessarily a choice to shave my head for aesthetic or style at that time it felt like the look was forced on me as a result of my sickness.

The following Monday, the day the 2nd ICE chemo began, on the way home I told my mom: “Can we stop at a hat store” She agreed and I quickly googled a vintage store because I already knew the look I wanted. We found JoyRide Vintage for Men in Orange, CA at “the circle”. This is where I found and fell in love with my retro style fedora hat that wasn’t going to lose its shape on me. This was also one of the first times I really pulled the cancer card and let my mom get the hat for me as a gift. I really needed that lift in spirits.

May 2019: So ICE twice wasn’t enough. The doctor ordered one more round for May after seeing just a few residual spots left. And by 5/28/2019 I got the best news of the past 12 months. Complete Remission.

The was by far the best DM I’ve ever gotten in my life. I took it with a grain of salt as I’ve heard “we’re done with chemo” before (see November 2018). But if there’s anything I’ve learned through this, it’s to celebrate the wins no matter how big or small. Those celebrations are necessary for keeping a positive mindset. So I did celebrate. My fiancée and I got off work and went straight to Tacos N Miches in Whittier. All you can eat tacos on this Taco Tuesday for $10. Yes please!

June 2019: Of course it felt like I had won the World Series, but the reality was this was the League Championship win. And I knew this since March, but with so many variables back then, it wasn’t worth explaining until now that it’s actually happening. Here’s what that means.

Autologous Stem Cell Transplant. That’s what’s next. The transplant is basically this: they collect your own stem cells (baby blood cells that aren’t white or red or anything yet), they freeze those. Then give you high-dose chemo to wipe out any tiny microscopic cancer cells that might not be detected with the PET CT scan. Then when your body is wiped near to 0 of red/white blood cells the collected stem cells are placed back in your body to bring you back to life. Pretty simple and make sense in theory, and is even crazier to see that it has worked for over 20 years. At the facility I was referred to do the transplant, City of Hope in Duarte, CA, they do about 800 of these per year. The only requirements are that you have to be in complete remission to get it done and have a negative bone marrow biopsy. So essentially they want to make sure all detectable cancer has been killed off and responding to chemotherapy and that there’s none in your bone marrow (which is where the stem cells originate). The transplant is considered “consolidation” to keep me in remission and not have it come back like we saw in December 2018.

This is how I relate it: We’ve removed the malware from my body and now it’s time to wipe the hard drive.

Here’s some fun facts about the transplant.

• Autologous – like “auto-mobile” means its self giving. So my own blood stem cells. This is in contrast to an allogeneic transplant where the patient’s bone marrow has cancer and needs a donor with matching blood type to give stem cells for transplant. Be the match.
• My immune system (white blood cells) are wiped out so much that I literally have a brand new immune system after transplant. This means I have to get ALL my immunizations all over again. My 10 year old daughter will have more up to date vaccines than I will.
• 7 days before transplant I am given high dose chemotherapy even stronger than the previous regimens called BEAM.
• On the 8th day when the stem cells blood are infused back into the body, that is considered a patient’s new “birthday”
• Stem cell collection is done by injecting a drug called Neupogen. It’s 4 days of 2 shots self-administered (or by any of the strong women in my household) and it stimulates the growth of stem cells. Stem cells are made in the bone marrow. So the shots cause the bones to work like crazy, and results in this excruciating bone pain which is oddly countered by Claritin.
• Then you are hooked up to an apheresis machine for 5 hours straight. (Yes, I had to pee in a bottle) The machine connects to a Hickman catheter (getting that put in was an interesting experience you can ask me about personally) where it pulls a small amount of blood. Then, it separates the stem cells and gives you back what’s left.
• I was told that the apheresis machine was originally designed by scientists that grew up on dairy farms in the MidWest US. The same idea behind separating dairy for milk and curds for yogurt and butter, etc by spinning it really fast to get them to separate was used for the technology behind the machine. The stem cells, red blood cells, and platelets all have different weights or consistencies and separate similarly in this machine. Makes sense right?

My goal was collecting 4 million stem cells and on the first day after 4 days of Neupogen I collected 0.74 million. Luckily, to speed up collection, they had a shot that can be administered no earlier than 6:30pm the day after first collection that would work with the Neupogen and boost the stem cell creation into full throttle.

I took the shot called Mozobil and collected 3 million stems cells the following day. Why they didn’t give me that to begin with, I don’t know. But I had to wait 30 minutes after they gave it to me to make sure I didn’t have a crazy reaction to it and then they let me go home. This truly is weird science.

With 3.74 million stem cells being enough, they said I was done collecting and could go home and rest. I am scheduled to be admitted to the hospital on 6/25 for a 3+ week stay. My new birthday is scheduled to be 7/3. My independence from cancer day! (Yes, I’m cheesy like that)

[Below Updated 1/5/20]

July 2019: So I had the transplant. It was not fun. It was not easy. It was not anything I would want to do again. But shortly after I started to hear the word remission more and more. I was officially CANCER FREE!

Note: For some reason, my phone isn’t transferring photos over to this post quite easily, so I’ll continue with the bare bones update sans pics.

August 2019: I was successfully discharged from the hospital and started wearing a mask and staying out of public places. My immune system and body as a whole is very susceptible to infection and even a tiny infection could mean a visit to the ER for me. I had regular weekly check-ups with my oncologist at City of Hope to monitor my recovery. I started to get my immunizations again (yes, the same ones babies get).

September 2019: I was then told about a “Maintenance Therapy” that was recently approved by the FDA to prevent the recurrence of Hodgkin’s Lymphoma (HL) in patients that had a risk of recurrence (me!). The maintenance therapy is a lab created anti-body that is designed to attack the known protein of HL and it has a little bit of chemo attached to it. (I’m a scientist now, lol). Find out more about Brentuximab vedotin. This was the first time I was really given the option to do something that the result of inaction wasn’t imminent death. The main side effect I was worried about was the neuropathy. This is the tingling of fingers and toes and extremities. In many patients it occurs while taking the doses and goes away after stopping. In a percentage, it is permanent. Basically, I could wait until the cancer came back (if it did), and then do this and more chemo. Or I could take it now and lower my risk of any recurrence. The deciding factor came down to the opinion of both my oncologists saying if they were in my shoes they would take it. It would be a lot easier to do now than however older I would be.

October 2019: I began the “Brentux” maintenance therapy and have had similar side effects from the first chemo, but now it seems like I know how to manage it. I get mild neuropathy from time to time, but we will wait until June 2020 when I get the last dose. Currently I am getting a dose every 3 weeks.

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This post will most likely be updated like a live feed as I find things out myself, so yes there will be updates and changes ad hoc. My creative thoughts are still compiling as I go through this. There is a journal of entries that I hope to share with you one day, but I would like to keep them to myself right now as they give me strength being with me. (I’m an introvert at heart, so I get energy from my own thoughts and feelings.) I hope you can respect that and when I’m ready to share, this will be the place.

In the meantime here is one entry which describes how I view my diagnosis and this process, and my hope for the future:

From 4/30/18: “Even winning boxers need to take the boxing gloves off in between rounds. Head to their corner and drink the water, get the medicine put on, patches taped up, pep talk, still courageous, take a breather and then get right back in gloves on and continue on to win.”

We’re all dying, I’m just trying a little harder to live.