The Power of Support

Chemo is a necessary evil. It is no wonder I was not looking forward to my next session. More specifically, the chemo infusion is not that bad – just a bit boring sitting there for 5-6 hours. It’s what happens in the days and weeks that follow.

I have come to realize the dual nature of cancer treatment.

In one aspect, it is an extremely personal, almost self-absorbed and self-seeking journey that only I am experiencing. This is my burden to bear. I have to endure the chemo. I will undergo the surgery. I have to beat this cancer.

But, in turn, it is also a shared responsibility and activity. It is a journey I can’t travel alone.

I am grateful for my family and friends that distribute the weight of my health challenge.

Just as I seek a cure, each of my family and friends are going through their own journeys…all are equally important, even if the level of effort varies greatly. What my wife and kids have to go through is very different than that of close friends and co-workers and acquaintances, but all is appropriately proportionate and equally felt and appreciated.

Everything that everyone has done for me gives me strength. From a simple text, to a phone call, to a silent prayer or casual thought. Everything is helping me “crush that cancer!”

I need to throw a special call out to my friend Zack, from work, who took out time from leading national security space policy work to spend some time with me during my latest chemo infusion. He didn’t have to. He wanted to show his support. I will be forever grateful for his time and care.

Luckily, we didn’t talk much shop! Catching up on kids and lives…the important stuff!

Though I am often alone in my suffering and healing. I am strengthened in my support network that literally spans the globe, but is always an arms length away.

To all of you, you will always have my eternal friendship and loyalty!

Rested and ready

Today starts a new chemo session. In actuality, I won’t get more chemo until Wednesday. It is a bit of a process until then.

Blood Monday. I have to get a bunch of blood work in preparation for visit with the oncologist on Tuesday. Today’s blood work will be extra special as I will get a bunch of extra blood taken for genetic testing. Given my relative young age and good fitness, I don’t fit the “normal” stomach cancer patient profile.

Being adopted, I don’t have “family history”. Back in the days of my adoption, little-to-nothing was shared. Through the miracles of modern science, I’ll find out everything that is wrong with my genes. Or I’ll find out that I am a mutant with latent super powers!

Me (and Not Me)

Thirty days. For thirty days I have been living with my cancer diagnosis.

While everything in our life has been flipped on its head, for brief moments I think I am pre-cancer Dave with my pre-cancer aware family.

That Dave is not going back-and-forth to the doctor’s for every conceivable test or exam every other day (so it seems). That Dave is going to work, going for a run or bike ride, and looking forward to his family getting back from Italy.

I was supposed to be doing something else right now; what I don’t know. But I was not supposed to be slowly recovering from my first chemo session in preparation for my upcoming sessions and surgery.

Becoming a cancer survivor is what I am meant to do and what I am meant to be.

However, the journey to becoming a survivor is very surreal.

My wife asked the other day what going through chemo feels like. I was at a loss for words (amazing, I know – she relished the moment, too, and reminds me of it often).

Chemo doesn’t feel great (duh!). But, it is not just physical discomfort and pain and side effects. It is as much psychological as it is physical.

Chemo makes me feel like…not-me or other me. Not in a weird Coraline “other-mother” way. Rather, I feel that I am living in an alternate universe…kind of like that Coraline movie. Simple to understand, right?

Like I said, it is hard to put into words. What I do know is that the chemo is making a new-me. Survivor me.

Thirty days down, a lifetime to go. I’m ready!

Macaroni and…better get some more toilet paper

Today is my 1-week chemo celebration 🍰🎉☠️

I feel like I am emerging from the valley of death, but think I foolishly thrust myself over a cliff today – all self imposed.

As I sat hooked up to all the pumps and IV bags during my first chemo session last Wednesday, the resident oncology nutritionist stopped to chat. We talked about how more than the need to keep my mind and spirit strengthened during my treatment -#crushthatcancer. We talked about keeping my body fed and my muscles exercised.

She encouraged that, despite the nausea I will endure and some vomiting, I needed a good calorie dense meal each day. I could offset eating with protein shakes or fruit/veggie smoothies. But the most important thing was to eat…and drink enough water to have to go to the bathroom with the frequency of a five-year old – meaning all the time and at the most inconvenient moments!

I had a craving starting yesterday. Channeling my inner five-year-old again, beyond frequent potty breaks, I really wanted some Kraft Macaroni and Cheese. No “healthy” alternatives. No Velvetta-based disgustingnous – I am ready to fight anyone over this. No trying-to-be-gourmet Panera Mac and Cheese. Only the stuff in the blue box with nuclear, orange-colored, powdered cheese! Delicious!

My dear Italian wife endured wandering the grocery store aisles looking for the Kraft box. I think she wore a wig and sunglasses to protect her identity from the Pasta Cosa Nostra. Luckily, after a quick Google image search and paying in cash so no mafiosi could track the transaction, success!

So today, for lunch, I did something I hadn’t done since college…made a box of Mac and Cheese!

It tasted so good!

Halfway through my second bowl though, “Houston,” we had a problem. My belly started rumbling and then the bathroom beckoned!

Some five hours later, every macarono (the singular form of the famed pasta shape) left my body.

Remember how I was supposed to eat one calorie dense meal a day? Yeah, those should be good calories. Not 1000+ calories of orangey-cheesey pasta-like food.

Sooo, I don’t think I am going to give into any cravings anytime soon. Except, I was watching Diners, Drive-ins, and Dives…stop me before I go to Flavortown bathroom-town again!

The hardest thing so far…

The night my daughter was born, she was under a little duress and needed to be attended to by a neonatal specialist. There was nothing wrong with her, just a slightly below average heartbeat that quickly recovered. While she was getting checked, it meant she did not immediately go to her mother. Rather, I stayed with her as the doctors checked and measured and probed. Before she was put in her mom’s arms, I got to stay with her and offer a calming, loving voice in the pandemonium of the delivery room. I still remember her little hand grabbing onto my finger and not letting go.

I truly believe there is a special bond between father and daughter and then a separate one between mother and son. I have my little princess that can wrap me around her finger in two seconds and ask for (and most likely get) the world, while my son has an influence and talent to make my wife melt with shaping his hands into a heart and saying, “Mommy is beautiful as flowers!”

It was no wonder then that the absolute hardest thing I have had to do with this diagnosis is tell our children that I have cancer.

My daughter’s only reference to the disease is the passing of a father of one of her classmates, last year in Second Grade. Great! Why did her only reference have to be about a father’s death? That was going to make taking about me with cancer that much harder. So with that in mind, my wife and I decided to slowly expose her to the full extent of my sickness, but that, in the end, we would be truthful and not hid anything from her.

My kids have known for the better part of the past six months that I have been having some stomach issues. So, after the initial diagnosis, on the first Saturday morning, I asked my daughter to go for a run with me. It is something we do regularly. I run and she follows along with her bike. We have great chats and talks as we explore our neighborhood on foot and peddle.

Usually, half way through our bike/run, we’ll stop for a water break. This time, though, when we stopped, I had us sit on some benches we found in a small clearing of trees. As I sat down and tried to get the words out of my mouth, waves of emotions broke over me. We still didn’t know the accurate staging of my cancer at this time. So, I simply told her, through misty eyes and a verklempt voice, I have to get surgery on my stomach because I have an soar. She became emotional, but immediately supportive. There were still ten days of school left, so I told her I would let her teacher know in case she got sad in school or wanted to talk to someone about it. Her teacher was great and even surprised her with a small stuffed animal to make her feel better.

About two weeks pasted before we knew for sure what stage of cancer I had and we started talking to more people. Word was eventually going to make it back to my daughter that I had cancer, if I didn’t tell her first.

Taking advantage of a beautiful late spring afternoon, my daughter, my wife, and I went on a bike ride together. My daughter would frequently ask about when I am going to have surgery and how long I would be in the hospital. With half answers up to this point, we once again found some nice benches off a bike path and sat down to talk.

I just came right out and said that I have cancer. I re-assured her that I would be fine, after I went through some treatment and surgery. After I talked, I asked her if she had any questions or what her thoughts were. What a kid! She is amazingly resilient and strong. She just wanted me to get better and hoped and prayed that I wouldn’t have any problems with the surgery. She went on to say how she would pray for me every day and that she would fast for me every Sunday…for at least an hour, no less!

I know her prayers are heard. 

As for my son, what can you expect a 5 year old to understand about cancer? We have told him that I am sick and have to be very careful when we play. But he also knows that I am home almost every day and serve as his Mario Party pal – in fact, today Princess Peach and Rosalina didn’t stand a chance…we crushed them 9 ⭐️s to 3 ⭐️s!

Through his limited understanding, though, he prays for me all the time (or makes sure anyone saying a prayer blesses me to get better). He also, no quite randomly, will just come up to me and say, “Daddy, you are the best dad ever!” And we have perfected the elbow tap as an alternative kiss/hug when his hands aren’t clean or I can’t be touched (due to my chemo pump).

I know his little prayers are also heard.

My kids have been with me every step of the way as I have started out on this new journey. One thing is for sure as I make my way forward, I will always hold on to them and never let go!

Slow slide down

So, I am on the edge of chemo nadir: the low point of my blood cell counts and start of many side effects. I can confirm, this is true and is happening to me. Don’t know how much more tired I will become or how much my body will ache.

I feel like I aged 20 years over the past two days. I walk like an old man, with my hip and back joints all out of alignment. But at least I am up and walking. My sweet wife endured a slow stroll around the neighborhood this evening to help me get out of the house.

Being stuck in the house is one of the hardest parts so far. I have never been one to just chill in bed for the day. Always up, always doing something. Now, I am pacing the floors and walking up and down the stairs, just for something to do – there are only so many subreddits to check throughout the day for updates.

My sleep is affected too. I think I’m going to have to chat with the doctor on Monday about insomnia. I can’t sleep at night…very frustrating. On a positive note, I am getting caught up on my binge list from Netflix and Hulu! Go Brooklyn Nine-Nine! Hilarious show and it helps keep my spirits up!

Supposedly, the down days will last for the next 4-5 days. It will be tough, but with the support of my family, I know I’ll pull through…just in time for my second chemo session during the middle of next week. Yeah! Something to look forward to!

And on another positive note, head shaving day is soon upon us! Figured I would get through Father’s Day with a full head of hair before sacrificing my locks to the follicle clipper gods before sending them down the trash.

This is tough, but I will endure!

Pick your poison

Chemotherapy, or chemo for short, is my first big step towards a cure. It is also used for tumor control or palliative purposes. By way reminder, my treatment regime is called perioperative care: chemo-stomach surgery-chemo. It is the most accepted treatment regime for gastric cancer; but that said, no standard of care exists for the treatment of gastric cancer. This is the “best” current approach – and by “best”, I mean it nominally elicits the better results than other care regimes.

But what is chemo exactly? Chemo is the use of any drug to treat any disease, but it is most closely associated with the treatment of cancer. In reality, chemo is the process of introducing poison – masquerading as medicine – into my body to halt the cancer’s growth and prevent metastasis (spreading to other parts of my body). The poison does not discriminate between health cells and cancer cells. This results in a number of side effects including nausea, diarrhea, constipation, hair loss (most susceptible healthy cells to chemo), loss of appetite, fatigue, susceptibility to infections (due to attacks on white blood cells), bleeding (due to attacking red blood cells), mouth sores, and neuropathy. Simple, right?

Not so fast. Each cancer responds to different drugs differently, duh! Oncologists select from ten (currently) separate chemo drugs for gastric cancer. One or more chemo drugs are used based on a number of factors (e.g. age, stage, physical fitness) and generally accepted medical practices.

Winner, winner! Chicken dinner! I hit the demographic and cancer jackpot for a 4 toxin medicinal concoction know as FLOT: Fluorouracil (5FU), Leucovorin (folic acid), Oxaliplatin (Eloxatin), and Docetaxel (Taxotere). But wait, I wrote FLOT and the first letters of all the drugs make FLOD…or if you rearrange them FOLD (not a good letter/tile set for Words with Friends or Scrabble) and no, DOLF is not a real word. Unexplicably, FLOT uses the name brand of docetaxel known at Taxotere; weird considering the other chemo drugs also have name brand alter egos.

On a positive note, I am subject to all the previously explained side effects and more…yeah me! #ChemoCrusader!

Infusion of the chemo drugs into my system occurs every 14 days for 4 cycles at the John P. Murtha Cancer Center at Walter Reed’s National Military Medical Center. Instead of getting an IV each time, I had a port placed. It makes access much easier.

Today: phase 1, day 1, cycle 1. So far, I am battling the verge of mild nausea, tingling lips, tight throat, and ninja chops to the mandibles (when I eat something, especially something crunchy…ouch). The nadir, or lowest point of blood cell counts, happens between days 5-9, with many of the other side effects can happen within hours after. Many of the other side affects begin to taper around days 11-14. But what about the chemo’s affect on my most enviable physical feature?

My hair, oh my hair! My soon-to-be-lost lushes locks! That’s right, I’ll most likely lose most, if not all, my hair. #BaldIsSexy

Luckily, that means its only a few weeks before I transform into Captain Picard – we both exude a profound personal charisma, intelligence, and adaptability which expands our fame throughout the known universe and often leads to our being entrusted with great responsibility accordingly. Ok, that explains Picard, not me. But, when I lose my hair, I think a quick silver Sharpie crown will give me instant credibility and foxy stile.

On another positive note, just about the time my hair starts to grow back, I’ll start my phase 2 post-op chemo regime – the same FLOT protocol.

The goal of my chemo is to shrink the tumor and kill any unobserved cancerous cells. In the end, this treatment protocol is a critical element towards my path to a cure. Bring it on!