Cancer Free, Not Free from Cancer – Post 9

I’m relieved and very happy to be cancer free and to begin to feel the fog of chemo lifting from my mind & body.

So why am I upset?

I’m upset at what cancer has taken from my kids, from my wife and from me.

From 2011 to 2019 – three rounds fighting cancer along with the deaths’ of our fathers have bled us dry.

The best way to describe the impact is in the photo below.

I call it the ‘Patient Wave Effect’ of Cancer as it rolls back and forth and back and forth long after that first pebble of breast cancer is dropped in the water.

On The Eve of Good News? – Sixth Chemo Treatment – Post 8

The Taoist story of an old farmer who had worked his crops for many years comes to mind this evening.
One day, the farmer’s horse ran away. Upon hearing the news, his neighbors came to visit. “Such bad luck,” they said sympathetically.
“Maybe,” the farmer replied.
The next morning the horse returned, bringing with it three other wild horses. “How wonderful,” the neighbors exclaimed.
“Maybe,” replied the old man.
The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy for what they called his “misfortune.”
“Maybe,” answered the farmer.
The day after, military officials came to the village to draft young men into the army. Seeing that the son’s leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out.
“Maybe,” said the farmer.

I have many thoughts about this story.
Some people say that the farmer’s bearing is evidence that he does not care what happens.

More conventionally the story is used to help others understand that there’s a whole story to be told and understood and that focusing on any one event in life is at best, fruitless and at most just plain foolish and unwise.

About three weeks ago I had a CT scan just before my fifth round of chemo.
The fellowe came in and told us the results with a sympathetic tone, the cancer is still there. She did say that she was encouraged because the tumor had shrunk significantly. Gina and I were disappointed.

Then Dr. Hamlin came in with a spring in his step. “Great news.” He said. “The tumor has shrunk by 90%. It’s responding very well to the therapy.”
When I said we’d all hoped to have a report of being ‘cancer free’, he mentioned that the 1cm x 4cm tumor may just be residual scar tissue. “It was 9cm x 14cm when we started.” He said. “Nothing to worry about for now. We’ll do a PET scan at your 6th treatment and go from there.” He reassured me.

So here I wait, stewing – the evening before my PET scan.

Hopefully all will be well.

Lymphoma is a systemic disease. So no matter what, I’m in for more follow-up, most likely more treatment, even if the scan is negative.

But I should feel positive and reassured that things could be much worse.

“Maybe.” I say.

McDaddy Shave Party – Post 6

My warmest and most sincere thanks to my friends and family who were able to join me on very short notice for our “McDaddy Shave Party”.

I will never forget how a group of genuine, free-spirited men and women helped me make light of one of the several indignities of cancer treatment.

I hope that you enjoyed yourself, because you truly made my day a great one that will buoy me through the grueling months to come.

Enjoy my photos!!!

Before…with James…
Will the barber…
Andrew working hard…
After…

Chemo Sucks – Post 5

Post 5 – Chemo Sucks

Getting chemo was wiggy.

First I was hit with the sleepies ‘cause of the Benadryl. That was fine. I just did my pap-pap McDade impression and took a snooze in the chair.

Next I was hit with a swirling consciousness. A little like getting a drunken buzz, but without the pleasurable reward.

That’s ok.

I could deal with that.

Between Gina and my awesome friend, Michelle, chemo felt like hanging out around the dining room table without the yummie food and/or wine.

By the end of the chemo day 1 I’d hoped to have a chemo date with G, but I was wiped out. Chemically spent. I just wanted rest.

And that ended up being the high point during the past week.

Days two and three all I could do was sleep and fight the rage that the 100 mg of Prednisone gave me.

I slept most nights, as well as a lot during the day. But I spent 3 nights uncomfortably rotating from bed, to couch, to toilet – all without anything interesting happening. Just basically frustrated and a little scared.

I finally had my last day of the steroids and I totally screwed up by forgetting my Claritin. Forgetting that one little pill caused my lumbar, pelvis and hips to surge with excruciating pain from the Neulasta shot. I could barely walk and suffered another sleepless night. Thank god Gina had leftover Oxy and we were able to tame the dragons.

By morning I could almost walk normally again and today has been ok.

I’m back on the Claritin and am looking forward to ridding myself of the pain completely by Monday.

The enormous bright spot in all of this has been the love and kindness we’ve received from friends in Ramsey. Thank you for every last pastry, ride for the kids, gift card for food and offer of help.

The Ramsey angels have been coming forward one by one helping us just in the nick of time.

The boys are maintaining some semblance of normalcy, but I hate that they see me in pain or loafing on the couch or bed so much. I just keep explaining that it’s only temporary.

Chemo Day 1 – Post 4

Chemo Day 1 has arrived and I’m a little bit drowsy

I’ll be happy to be cured and no longer feel lousy

I sit in the chair with a nice little high

Gina is doting and anxIous, my sweet little bride

I’ll nod off to sleep – The nurses double check the spread

The drugs are infusing as I lay down my head

So thankful for the support from far and near

Glad to be at Sloan Kettering, they are without peer

Friends check in by text making sure I’m alright

When I get home I’ll sleep well tonight

It’s now time to nap and count all my sheep

I’ll lay my head back and begin a healing sleep

I’m Lucky – Post 3

I’m lucky. My fence is broken, but it can be fixed.

My diagnosis is Non-bulky, Stage IE, (IPI: 1), non-germinal center, KI-67 80%, double-expressive, DLBCL.

My understanding of what I have is:

  • Non-bulky – tumor is less than 10 cm
  • Stage 1 – the cancer appears to be in one place in my body (among other positive factors)
  • E – the cancer tumor is extranodal – meaning the tumor grew outside of the nodal area in one place (for me, my left latissimus muscle)
  • IPI:1 – I have a low risk 0-1 (which is good) on the International prognostic index
  • non-germinal center – there are “germinal centers” that are sites within the lymph nodes and spleen. My cancer has cells that originated from outside of these centers
  • KI-67 80% – this means that a protein involved in cell replication (KI-67) has been identified and the tumor is “high grade” with respect to growth. This is not necessarily “bad” because it can mean that the cancer may be very receptive to treatment (chemotherapy) as it is a hungry & greedy son-of-a-bitch
  • double-expressorDEL or dual expression of oncogenes (genes that can turn a cell in to a tumor) MYC/BCL2 means that each of these is expressed by my tumor. 

Not to be confused with Double-Hit (DHL) which may have a somewhat worse prognosis. DHL is when there is chromosomal re-arrangement with MYC/BCL2 and/or BCL6. I am NOT DHL

  • DLBCL – Diffuse Large B-Cell Lymphoma “is a cancer of B cells, a type of white blood cell responsible for producing antibodies”

Every cancer professional I talk to tells me this is the cancer that you want to have.

I believe them. I’m just not excited about having it.

I’m not going to get in to my prognosis – let me just say that we’re going for a cure or complete remission.

A cure is possible as I’m young (for this cancer), the single tumor was found early. (Thank you, Gina.) I also probably have the best medical team in the world for this particular type of cancer, led by Dr. Paul Hamlin. Thank you MSKCC for taking me.

I start R-CHOP on Thursday, May 2nd, 2019. It takes 460 minutes (about 7 hours) to infuse me with the chemo:

R: Rituximab

C: Cyclophosphamide

H: Doxorubicin Hydrochloride (Hydroxydaunomycin)

O: Vincristine Sulfate (Oncovin)

P: Prednisone

  • R Rituximab – is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. When it binds to this protein it triggers cell death.
  • C Cyclophosphamide – is a medication used as chemotherapy and to suppress the immune system. It is in the alkylating agent and nitrogen mustard family of medications. (Don’t be surprised if I ask for hot dogs and hot pretzels.) It is believed to work by interfering with the duplication of DNA and the creation of RNA.
  • H Doxorubicin Hydrochloride – is in the anthracycline and antitumor antibiotic family of medications. It works in part by interfering with the function of DNA.
  • O Vincristine Sulfate – It works by stopping cells from dividing properly.
  • P Prednisone – is a glucocorticoid medication mostly used to suppress the immune system and decrease inflammation. It is used to treat high blood calcium due to cancer and adrenal insufficiency. I hear that it might make me crazy…what’s the baseline on that exactly? Lol

So there you have it. That’s what I have. And that’s what we’re going to do about it.

Four rounds of chemo every 21 days followed by 2 rounds of just the Rituximab.

Then I’ll have a PET scan to see how I’m doing.

It is a chronic disease. It will probably come back – maybe several times in my life. But it can be beaten, each and every time.

I’ll be happy to knock it out of my body on the first blow, but I need to be realistic.

I’m lucky. Lucky to have the love and support of my family and friends. Lucky to have access to phenomenal health care.

I’ll be happy when I can go play hockey with the boys again.

Billy McDaddy in the greenhouse at 136 West Swissvale Ave, posing for hockey.
Billy (me) ready for hockey!

Socialized Medicine Sucks – Post 2

I’m so thankful I live in the United States of America. I used to say this a lot when Gina was first diagnosed with breast cancer. Now I’m chanting it again.

Why am I so happy? I’m happy because we currently have access to the best healthcare system in the world.

I know…this is political territory, but please let me explain.

When it comes to healthcare you can have two out of any three of the following:

  1. Universal Access (immediate access to care regardless of an individual’s “coverage”)
  2. High Quality Care (the latest procedures, best standard of care and newly developed drugs)
  3. Affordability (Low cost, not dependent on an individual’s ability to pay and/or fully governmentally subsidized healthcare)

Unfortunately, you can’t have all three – as a society we must pick two of these and live with them.

Just like everyone can’t live in a world where everyone gets everything that they want all the time for free – that’s called a fantasy.

But why is it that we can’t have all three and must choose only two you may ask?

Economics. The basics of Supply and Demand along with human nature and our desire for excellent health and also remuneration for investment risk (investment of time and/or money) and services provided.

We have currently decided in the US which two we’ll take. We have 1 and 2.

In the US there is Universal Access to Healthcare, and it is of the highest quality on the planet.

If you don’t believe me then point me to another system anywhere in the world where poor people regardless of their ability to pay can walk in to Memorial Sloan Kettering Cancer Center and receive world class treatment immediately, while other poor people can go on Medicaid and receive world class gender re-assignment therapy (nearly immediately) at institutions like UCSF Medical center – all while we can pick our own gynecologists, orthopedists, internists and receive breast implants as long as we pay in cash or sign on the dotted line for the plastic surgery.

Is this a perfect system?

No. It is costly as hell. That’s one of the reasons why we keep spending more and more on healthcare every year at the federal level and why private health insurance premiums keep going up.

But it does work.

At least it works far better than foregoing number 1 and choosing 2 and 3 (like Canada).

Let’s look to our neighbor to the north where they have chosen 2 and 3.

But you say, “Bill. Canada has Universal Healthcare. Doesn’t that mean that they also have Universal Access?”

No. It does not.

In Canada you have to wait in line while your cancer goes from Stage I to III and beyond before you can actually be treated.

Just ask this young, 33-year-old mother with anal cancer.

If Canada’s system, choosing numbers 2 and 3 isn’t the right choice, then how about picking numbers 1 and 3?

That’s what places like Cuba have.

In Cuba there is absolute Universal Access to healthcare. But the solution for many people’s illnesses like cancer in Cuba is Ibuprofen and morphine. They’re not interested at that point in curing you. That is expensive. They can’t afford to use high quality (and high cost) drugs like we have in the US.

Instead, in Cuba they make you comfortable while you die.

Options 1 & 3 and 2 & 3 really end up being a life and death choice (the choice of death for any serious illness) over the choice of 1 & 2 (what we have in the good ‘ol US of A).

I thank God that I live in the US every day, and now more than ever.

The cost of our healthcare will mean that Gina and I may lose our home.

We already have lost our savings. But…that’s ok.

Gina and I CAN LIVE with that outcome.

What we can’t do without is Immediate Access to High Quality healthcare.

Without that she and I would be leaving Will, Andrew and James all alone.

Tomorrow’s blog post will pick up the story from here.

 

Diagnosis 4/10/2019 – Post 1

I’m 48 years old, and I have cancer – non-Hodgkins, Diffuse large B-cell lymphoma (DLBCL).

It’s aggressive, but localized. It hurts. (I thought that cancer wasn’t supposed to hurt?) We’re going for a cure. Four rounds of R-CHOP chemo, followed by two rounds of rituximab on its own – each given three weeks apart over the course of one day, outpatient at Memorial Sloan Kettering Cancer Center (MSKCC).

I’m familiar with MSKCC. Gina has had nearly all her surgeries and chemo done there. For those of you who know my wife, she’s healthy. No new recurrences. All is well. She kicked triple-negative breast cancer’s butt twice.

I plan to do the same with my cancer.

I quit drinking from Thanksgiving until just recently. People asked me in December how it felt to be sober. Most were surprised when I said, “I feel like shit”. I was surprised. I thought that if you drank regularly and then quit you’d begin to have more energy and feel more alive after a few months.

In February Gina noticed a lump on my back. Since I’d had a sebaceous cyst (similar to a lipoma) removed from my back more than fifteen years ago, I figured it was the same or a similar thing.

So did the dermatologist. And so did the plastic surgeon.

When the surgeon went in to remove it under local, she was surprised to find the mass growing in my latissimus muscle all the way through to my rib. For those of you that aren’t surgeons, a local works great for cutting through skin and fascia without pain. Once you have to try and numb up a large muscle group for cutting, a local is no longer effective. The blood in the muscle washes away the anesthesia too quickly to allow any serious cutting.

But the surgeon needed to get a dungeons-and-dragons dice-sized chunk of this mass out for pathology. So in she went, and out I screamed.

That was on Tuesday before Will and I flew to USA Hockey Nationals. His team came in third in the country at Notre Dame. (The videos of the games can all be found here on my YouTube channel.)

When Will and I got back from Indiana a week later, the pathology was still incomplete. Then on over-the-hump day, the first day of the 2019-2020 hockey tryouts, I got the call. The surgeon said that the pathologist called her right away even though the report won’t be done for about another week. There was a slide full of large B-cell lymphoma. It was unmistakable.

Unfortunately, Gina overheard the call and Will came home to his mother crying. Then he and I went to the rink.

Tomorrow’s blog Post 2 will pick up the story from here.