Yesterday, Luis and I went to our first appointment to meet our oncologist, Dr. Don Stevens. He is one of the founders of the Norton Cancer Institute.

We came away with a better understanding of what we’re dealing with. They had some good news and some not so good news – but more good news. And everyone is extremely optimistic about our chances of beating this.

This is kind of a long update, just because we learned so much…

 

THE TEAM

We really like the people we spoke with. Dr. Stevens came in last to speak with us for about 10 minutes. He gave us a background of Hodgkin’s Lymphoma and his practice. He told us that when he was in medical school that there was a lot of debate as to whether Hodgkin’s is actually a lymphoma (which it is) and that it used to be called Hodgkin’s Disease.

We also met Dale, a nurse practitioner. She spoke with us more at length about this type of cancer and the usual treatment, and she also examined my full body. She told us about the tests we’ll need next, and the usual course of treatment. She also was very optimistic about the prognosis – that this is a very treatable and beatable disease.

 

TUMORS & ORGANS

During Dale’s physical examination, she felt a lot of trouble spots.

Although I had only identified two swollen lymph nodes myself – one of which was taken out during last week’s biopsy – Dale was able to spot many more. It turns out that I have tumors all throughout my neck and shoulders. I lost count once she got to 8-10 tumors, and she didn’t even feel on my left side due to the swelling from last week’s surgery.

She’s not specifically worried about the amount of tumors that have formed. It’s all still treatable, and we really won’t know more until we get this staged with a PET scan.

Slightly more troubling is that she felt that my liver felt large. If the cancer has spread below the diaphragm and/or into organs, then we’re at least into Stage 3 and possibly 4 cancer. But even if we are there, this is still very treatable, they assured me.

On a positive note, they said my lungs sounded great. And it’s very positive that I am not experiencing any other symptoms.

 

NEXT STEPS

Our next steps are to get a PET Scan and a Bone Marrow Biopsy, before we’re able to get a treatment plan formed and begin treatment.

The PET Scan (Positron Emission Tomography Scan) is a rather simply body scan. Basically, I will have to fast before the test. Then, I will be injected with radioactive sugar, which will expose the cancer on the full body scan. Apparently, all cells use sugar – but cancer does so much more greedily as it grows faster and requires more sugar.

The PET Scan will expose where in my body the cancer is, and how much of it there is… At that point, we’ll be able to know what Stage the cancer is in. (Shown to the left – an example of a PET Scan, not my actual one which I haven’t had yet)

The Bone Marrow Biopsy is probably the most terrifying test I’ve ever heard of. They do this test to make sure the cancer has not made its way to the bone marrow. Basically, they will drill into my hip bone to extract marrow and bone fragment to analyze. And although they will give me some sedatives, I will be awake while this happens. I am not looking forward to this test.

This will all begin next Monday/Tuesday.

 

FERTILITY

Luis and I have always agreed that we want kids. Kids are part of our plan.

Possibly the thing that has me the most down after this consultation is that this treatment will render me infertile for the rest of my life. Don’t get me wrong – I’m very happy to have the lifesaving treatment! It’s just a bummer to have this permanent, consequential side effect. Luis and I are going to (quickly) investigate the feasibility and cost of freezing sperm. Quick analysis looks like a few thousand dollars.

We’ve also learned that any cancer diagnosis all but disqualifies applicants for traditional adoption. So our already tricky road to having kids has narrowed considerably. But we still have a lot of research to do.

 

DIET CHANGES

During treatment, I’ll have to make some adjustments to my diet. Mostly, that means not eating raw vegetables or anything which is known for carrying more pathogens… I can still eat veggies, but they need to be either cooked or the type which can be peeled. Also, no grapefruit; not sure why on that one.

 

And also the most consequential diet change: I have to stop drinking! For, like, the whole treatment period.  But – I think I might seek a second opinion on that!! 🙂

 

FINANCIALS

It sucks to have to worry about finances during a health crisis, but I suppose that is a fact of life here.

After consulting with Dr. Stevens, we’ve decided to delay further tests and treatment until the beginning of the year. We’re sure to blow through our Out Of Pocket Maximum and we’d like to sequester that to a single calendar year. With everything resetting on January 1, we’re going to start accruing the bills on January 2.

It’s really fucked up that health insurance gives people a financial incentive to delay lifesaving treatment. Luckily, we are only delaying ours by a few days.  Dr. Stevens says there is zero health risks associated with this short delay.

Heck, had I listened to my soon-to-be-former general practitioner who told me to “wait and see” for months and months, I still wouldn’t even be diagnosed.

 

SUPPORT

All of the support I’ve received from family and friends have been very uplifting during this difficult time. All the love and prayers being sent really helps to keep a positive attitude.

Luis is going to start working on a “Support Map” to show all the states and countries where we have people praying for us and sending positive thoughts.

 

NEXT UPDATE

I’m not sure exactly when I’ll have my next update… All I expect to learn this week is what next weeks’ schedule will look like. But things should start very fast – it’s possible that I may begin chemo as early as late next week. And I will keep this blog updated with everything I know!

 

Much love.

-Merv