Thanksgiving comes and goes. Ordinarily it is my favorite celebration. Somehow we don’t feel very festive this year. Our friends Mike and Janine already have family plans off-island, so we are on our own in their beautiful home. Though we have been invited to spend it with some other island friends, we feel the need to be on our own instead.

The quiet time is good for us. I roast an organic chicken with carrots and make mashed potatoes. Even though I don’t eat meat, only fish, I always acquiesce and have turkey on Thanksgiving. This chicken is a fine substitute, as a turkey is too big.

We give thanks for all our blessings and enjoy the meal together.

 

Knowing that Greg’s first radiation and chemo are right around the corner, we are nervous. Fear is part of it too, and not knowing exactly what it will feel like makes Greg apprehensive. Is it going to hurt? Will he have claustrophobia in the mask that he has to wear in the radiation machine? Will the chemo affect him right from the start?

It feels like a gas pedal is stuck and we’re speeding down the highway without brakes. It’s all happening without our control. Not good for a couple of control freaks.

The form-fitted mask is finished, his PET scan has been done, and his chest port and his G-tube are in place. The PET showed “activity” on his thyroid gland, mandating a biopsy. Another little procedure, but it turned out normal/benign. Whew.

This is the mask he wears during radiation.

I love my husband and am a nurturer at heart; I’m not afraid to be a care-giver. I enjoy learning how to use the gastronomy tube (G-Tube): how to clean the tube itself, keep his tummy area clean, tape the dangling part onto his hairy stomach, administer the so-called food (Boost…yuck) via syringe, and how, as an alternative, feed him that yucky stuff using a pump and hanging the bag of Boost on a pole so that it can trickle in. It’s not that difficult, but it’s important to  regulate the pump, and to avoid germs while working through the process.

 

We won’t need to go through this G-Tube feeding rigamarole until he has trouble maintaining nutrition orally, so for now all we do is keep it clean by putting a couple syringes full of water through it daily. It’s not easy for Greg to accept this foreign contraption as a way of life. “It’s gross,” he tells me. Of course he’s right. It’s gross.

The first day of treatment arrives: December 5, 2016.

We rise and shine early to give ourselves plenty of time. Being punctual is of major importance to us all the time, but it is even more important today. Coffee is first on our list. The adrenaline I hate so much is already coursing through my veins. Adding a little caffeine will make it worse, but coffee is our lifeline right now. Neither of us can eat.

As we’re ready to leave we run through our check list: ferry passes, cancer information binder, protein bars, Isabela (our dog), dog leash, water for us and Isabela, coffee, books, yarn and crochet hooks (I’ve got to keep busy), jackets, mittens, hats, and our notebook. We also make sure to bring a special drawing done by a young girl, Lilly, who is the daughter of our friends, Sean and Dori. It’s a lovely illustration of the ocean and has the name of our little pueblo, Pescadero, on it. Greg wants me to take his photo with the drawing while getting his treatment. This way we can show her how much it means that she created it for him.  He considers it his talisman, serving him with power. He’s sweet like that.

The ferry ride today is a blur, but I get out of the car and go up to the passenger deck to get a photo as we travel to “the other side” as we call it. This is the first of 35 daily trips (Monday through Friday) for Greg’s cancer treatment. The first of seven chemo treatments, in addition to radiation, is in two days.

Treatment begins!

 

 

 

 

 

 

Time Between Procedures

 

We head up to Greenbank Farm on Whidbey Island to let Isabela run and to enjoy our “free” time. Greg has appointments for getting his chest port and his gastronomy tube, but we make the most of moments we have beforehand. Being back on Whidbey Island is a lot like being home. You know that sweet feeling that you get from being home? We are taking this as a happy sign. Not enjoying the weather so much, but when there is a break from the rain and snow, we venture out.

 

Having Isabela with us is wonderful. She is devoted to Greg and he to her. Love is happening here. Probably the only thing bothering us now is how unsettled it feels to wait for treatment to start. It’s cold too. And we’ve been away from Whidbey for six and a half years.

It’s fun to see the fir and cedar trees again, but did I mention how cold it is? Brrrr. Greg is borrowing Mike’s jacket and I have some of Janine’s warm clothes too. The thrift store offered some warm things also, and we bought new boots and socks. Both of us had boots when we got here, but the soles came completely off the boots from lack of use. Apparently that is a common problem. Who knew? The sales guy at REI knew. He’s seen it before. We’re bundled up and Janine gave us an electric blanket for the trailer. We snuggle and try to enjoy ourselves. One morning we wake up to snow. It’s pretty, but it’s not what I had in mind.

 

We spend a fair amount of time inside Mike and Janine’s home. It’s so beautiful and comfortable. They keep bugging us to just move inside, but we are determined to give them (and us) some space. This is going to be a long haul.

Finally the day arrives when Greg has his chest port inserted into his chest. He’s in good spirits and he even gives me an uncharacteristic smile in his pre-surgery way.

 

He looks so good to me in these moments. Even with that stupid hair net. I’m so worried about my guy. I remind myself that visualizing a good outcome is paramount to success. So I see it. I see him healed even before the treatments start.

Too bad I can’t hold on to that image when I need it the most. The future holds a lot of heartache and despair. But right now we don’t know that. Our expectations are that because he is so healthy, he can do this without much trouble. We couldn’t be more wrong.

 

 

Providence Regional Cancer Partnership in Everett, Washington

 

At Greg’s first appointment we are given a red card, lettered in black, “You are on the Red Team.” We have a team! Yes we do. Included on the Red Team are the oncologists and all the people who will assist us including our scheduler, nurses (two of them), the ones who administer the radiation and chemo, as well as the physician assistant (PA). It is going to take a lot of teamwork to cure this cancer.

Dr. Saikaly is the chemo oncologist. He is a soft spoken man with a big smile and kind eyes.

He’s been at this awhile and he exudes confidence. The plan, as he describes it, is aggressive—35 radiation treatments and 7 chemo treatments. Radiation will be scheduled for Monday through Friday and Chemo on Monday after radiation. Dr. Saikaly calls it a double whammy, no holes barred.

Little do we realize how much of a whammy this will be, even though the oncologist describes in detail all the side effects (tons!) and we are overwhelmed. We are given a 3-inch notebook full of information with tabbed sections where we can add things as we go along. Everyone here understands that the complicated verbal information and directions will be lost to us as soon as we walk out the door. The comprehensive notebook contains everything we are being told and more. All the important Red Team names and telephone numbers are listed and we are encouraged to call if we have questions or if there is an emergency.

Greg will have blood tests every week. His first one shows a healthy man. All of the results read how you’d expect for a 20 year-old. Makes it hard to believe he has this life threatening cancer.

Next we meet with Dr. Little, the radiation oncologist. He is the younger of the two oncologists— early to mid 40s I’d guess.

His demeanor is opposite of Dr. Sailkaly’s. Dr. Little is very reserved, almost taciturn, and while he isn’t stand-offish, he isn’t outgoing either. He explains some of the same things that we learned earlier. Nobody is hiding the ugliness of the upcoming treatments. We are given another notebook, almost as huge as the first one, specific to the radiation treatments. We learn that Greg will be fitted for a mask. The mask is molded to his upper body and head, and will be screwed down to the table he will lie on, holding him still as he glides into the radiation machine.  A mask? What? Our hearts pound.

The following is from the Providence Regional Partnership Website:

The radiation is called TomoTherapy and is a new way to deliver radiation treatment for cancer. It delivers a very sophisticated form of intensity-modulated radiotherapy (IMRT), and combines treatment planning, CT image-guided patient positioning, and treatment delivery into one integrated system.

The radiation treatment is delivered similar to the way a CT obtains an image, by continually rotating around a patient. However, it’s not only capturing an image, but delivering a highly focused, intense beam of radiation to the cancer target area from multiple angles. TomoTherapy assists physicians in developing highly precise treatment plans with minimized side effects for patients. The Cancer Partnership’s new TomoTherapy machine is one of only 120 in the world.

This new technology is adaptive, and allows physicians to adjust and customize the size, shape, and intensity of the radiation beam to target the radiation to the size, shape, and location of the patient’s tumor. This benefits the patient by minimizing radiation exposure to healthy tissue. New images are also created every time the patient is treated to help guide treatment based on patient anatomy for that day, rather than for last week or last month.

~~~

Both oncologists recommend that Greg get a chest port for administering the chemo and other meds, plus the port can be accessed for the weekly blood work. Rather than get intravenous pokes for seven weeks, making him appear to be a drug user, the port will handle everything like a breeze. It’s a quick surgical procedure. Also, both doctors strongly suggest that Greg get a stomach tube for feeding once his radiation treatments make it difficult to impossible to accept nutrition orally. Gross. Just gross. This doesn’t sound good at all, and Greg is skeptical.

Gastronomy Tube (G-Tube)

This is how they place it.

 

But it is important to keep up with nutrition to help fight the effects of the radiation and the chemo. Greg only weighs 174 pounds. At 5’ 11” that isn’t much weight. He’ll need all of it to stay strong. There are so many tests and procedures for Greg. He is taking it in stride–so calm. I’m usually the calm one, and now the roles have reversed.

The first thing Greg will have is the positron emission tomography, also called PET, and computed tomography (CT) which are diagnostic imaging methods used to find and assess tumors inside the body, and evaluate how a patient is responding to treatment.

From the website:

“The GE Discovery PET/CT scanner blends both into one—a single, full-body scan generates two sets of images, which are fused to show a patient’s anatomy and any hot spots of suspected cancer. A PET scan can be used to detect cancerous tissues and cells in the body that may not always be found through computed tomography (CT) or magnetic resonance imaging (MRI).”

A PET/CT scanner can produce 3-D multidimensional, color images of the inside workings of the human body. It shows not only what an organ looks like, but how it is functioning.They use a special dye (tracer) that shows cancerous activity if any, and we will know if cancer has gone somewhere besides his tonsil (metastasized). Greg is encouraged by this, because he says, right then and there, that he will forego treatment if they find it elsewhere. “Just like my father did when they found more cancer in his body,” he tells us.

Here’s what it looks like:

 

At this point, I’m visualizing a clean PET scan with all my heart, using whatever positive energy I can muster and I’m beseeching the Universe to make it so. It’s not so much that I don’t believe in God, I accept there is a higher power, I try to live like a good person, but I do not pray to God. Neither of us do. Many of our dear friends will pray for Greg (and me) throughout this journey, and this gives me hope. I admit it seems contradictory, but I do believe in the power of prayer, and I am grateful that others will be praying.

Next we go on a tour. Chemo is administered on the 3rd floor and there are many beige recliners scattered into pod-like areas. There are a few private and semi-private rooms as well, all outfitted with recliners. In one small area is a community refrigerator and coffee and some granola bars for the patients to enjoy. If you bring food or drinks that need to be chilled, you can use the refrigerator.

The large room is flanked on one wall with windows that have expansive views of snow covered mountains beyond the parking lot below. Every recliner is occupied. Lots of people getting treatment for cancer. More than you might imagine. Lots of people are knitting, crocheting, reading, talking, or just staring into space as the poison goes drip, drip, drip into their veins. We avoid their eyes because it makes us feel we’d be invading their privacy. There are nurses everywhere tending to the needs of the patients. They move with grace and purpose. They look you in the eyes, not with pity, but with empathy and understanding. Handshakes and smiles abound.

Our last appointments are with the financial adviser and the insurance guru. Providence is a non-profit and they have resources to offer patients with financial needs. We are offered help too, though we don’t accept, knowing that others need it more. This long day has been exhausting, but we are touched by the professionalism, respect, and kindness demonstrated by everyone we meet.

The scheduler, Abby, will call us about dates and times for the PET scan, chest x-ray, as well as the chest port and stomach tube procedures. We’re moving pretty fast, but the first radiation and chemo won’t be till Dec. 5th. We’re going to have some down time on our hands.

We’re suspending almost everything our lives are about in order to deal with Greg’s cancer. We’ve left our beautiful home by the beach and driven from the bottom of Baja to almost the tip of Washington state. In the process we have become vulnerable in ways we never dreamed possible. In the midst of fear and anxiety, small things, like a smile or a nice gesture, have the power to cause tears to well, not just in my eyes. In Greg’s as well.

We are more grateful than ever to our friends and family and our Red Team. We feel it is important to give back to everyone, including to those at Providence Regional Cancer Partnership. As the weeks go by we bring freshly baked cinnamon rolls to the women at the front desk and Starbucks cards to others we’ve encountered. Everyone has gone above and beyond to answer our questions, make us feel comfortable, and treat us with respect. “Thank you,” escapes from our lips constantly.

More than one million people in the United States get cancer each year. Whether you have cancer or are close to someone who does, understanding the facts can help you cope. We are getting the facts.

I cannot begin to speak for anyone who has cancer. Not even my husband. I can only share from the partner side of things, but I do have first-hand knowledge of the dedication demonstrated by the health care workers where Greg is treated. They are phenomenal people. Angels, every one of them.