The endoscopy shows no problem. Back to square one. Now Greg is saying he has a sore throat. Is it from the endoscopy? “Open wide, honey.” I peak in and am shocked by what I see. All those pustules. Is this strep throat? After we share the results of the endoscopy with Dr. Angulo, he examines Greg’s throat and prescribes an antibiotic. “Vuelve dentro de diez días.” (Come back in ten days.) There is clearly a horrible infection in my guy’s throat. And it doesn’t go away. Not even after the whole series of antibiotic are finished in ten days.

Our dear friends, Sean and Dori, are both veterinarians. As you may be able to tell, they are also quite the hilarious couple.

We often discuss medical issues with them. Not just regarding our dog Isabela’s issues. Our medical issues too. They are doctors after all. Most of their patients have at least four legs, but what the heck? When talking with Dori, (she isn’t mincing words) she admonishes us. Apparently we made a big mistake not getting a culture done on Greg’s infected throat. “A culture will tell exactly which antibiotic will work on this particular bacterial infection.”

Of course. Anyone knows this. Even we know this, but somehow the location where this information got stored in each of our brains is malfunctioning. Asleep on the job. Like Dr. Angulo. Why didn’t he take a swab and do a culture? Instead, he only sent the fluid from the endoscopy to the lab (to see if it is acid reflux I’m assuming) and they found nothing significant. And as far as we know, the throat infection is not related to the original problem. But this infection problem can be solved with the correct medication, so we decide to stick closer to home and go to St. Jude’s Hospital/Clinic in Todos Santos to request a throat culture. As it turns out, we never go back to Dr. Angulo.

It takes a couple of days for the throat swab sample to grow, so we wait. For someone who rarely sees a doctor, my husband is visiting many of them now. He’s not a happy camper about it either. “This is going on and on,” he tells me, “and I’m sick of it.” If we only knew what was in store for him.

Things did not progress as we hoped. Now the results of the culture come back tainted from all the antibiotics he’s been taking and he needs to wait a week before they do another culture. Get the antibiotics out of your system and come back. August is turning into September and we are no closer to discovering an answer to our original question. Why is there pain with yawning or opening wide? Greg has seen 4 doctors in a month, had two procedures, and the only thing we know for sure is he has an infection on his left tonsil.

You cannot accuse my husband of having patience. He has not been known for it, even on one of his good days. While he will learn to have a little during the next eight months, he is sorely lacking in this area at this point.

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He’s not one to “reign himself in” about his frustration either. If you have a problem with expletives, you don’t want to be around Greg when he is exasperated. This time I do not blame him for being highly aggravated, but really there is nothing we can do now except follow through with the next culture and do some more waiting.

We agree to take one thing at a time, and the second culture gives us the name of the right antibiotic. A doctor at St. Jude’s in Todos Santos writes up the prescription and none of the pharmacies have it.

The tune by Carole King swims around in my head. “You’ve Got a Friend”

Later I painted the saying so I could remind myself. “Refuse to Sink!”

Just a few of the things I have to use for hydration and feeding.

I am recording things in my notebook to make sure I have something to which I can refer if I can’t remember my care accomplishments. Which medication? When? How much? How much nutrition has he had?  When does the next shipment of hydration packs come? Did I order them? The pharmacy is good about calling when they believe I’m running low on supplies. Where are those syringes? (I have many different ones. Some come already filled. Others I must draw medication into the syringe.) Sanitary practices must be followed. I’m paying a great deal of attention to all of this. I can’t let my emotions join my nursing party. Focus. Focus.

No longer doing any exercise, he lies in the chair trying to sleep, in between trips to the bathroom.

Without my family and friends and the neighbors who are splitting wood and keeping the stove burning, feeding the chickens, and letting them out when I am gone, I’d be unable to function. We had never even met this neighbor before. The care they give us is such a gift. All the people who help, give hugs, their ears that listen. Priceless.

I tell Greg not to try to get up without me or someone to help, but he’s not “with it” enough to remember, or the urgency to get to the bathroom is too much. He’s fallen twice now. His fever is getting too high. I am crazy with fear and worry. I call the nurse and she tells me to take him to emergency.

At this point our sons have gone home to California and Florida with promises to return again soon. So Harold helps me get him in the car and offers to take care of Isabela, so I don’t have to have her stuck in the car for hours. Bless him. (He’s not a dog lover either).

I drive to the ferry and head for the hospital. Good thing I remember to bring a big pan in case he needs it. Which he does. I force myself to concentrate on driving carefully. I’ve got precious cargo to deliver to the hospital.

A note: I started this diary of our journey with cancer quite some time ago. It’s been a long haul, but I think I have what it takes to finish this now. Here we go with Part XII.

Taken at Mike and Marla’s…before the treatment side effects hit.

Christmas is swiftly coming upon us. It is going to be different for sure, but while Greg is feeling okay, we are trying to enjoy our lives with people we love. Visiting with our dear friends, Mike and Marla, whom we haven’t seen in so many years, is good for our hearts.

Being with Marla brings big smiles.

Janine and her daughter, Jordan, love to decorate their home for the holiday. Greg and I haven’t done any decorating since our kids grew up and left home, so this is quite a change. It’s very festive, I have to say, and somehow it cheers us both.

There are decorations up all over town. Even the hospital gets Christmassy. (Yes, that’s really a word).

The view from the Providence Regional Cancer Partnership on the 2nd floor where they give the radiation treatments.

One day leads to another. The rhythm of riding the ferry, driving to the hospital, slipping into a hospital gown, being slid into the radiation machine becomes so familiar he can do it without much thought. Although reality means there are many thoughts and questions swirling around our brains.  Each day of treatment brings a different ugly physical reaction for Greg. He is being fairly stoic, and maintaining a pretty good sense of humor, in spite of the roller coaster ride that is radiation and chemotherapy.

Heading out from Mike and Janine’s driveway to the ferry.

As people who live with a dog, we have to make this daily grind work well for us and help make the new routine as comfortable as possible for Isabela. If she thinks we’re getting in the car to go somewhere to play with her she gets so excited she can’t stop barking and bouncing around from window to window in the car. This behavior consequently drives us crazy. This is a stress we do not need.

As I said before,  every morning as we climb into the car to head for Everett, I tell her, “We’re going to the hospital. We’re taking Daddy to the hospital.”  Repeating this helps her to understand that we are NOT heading to the beach or the park to entertain her. Rather, she soon learns that “going to the hospital” means she is going to be stuck in the car for a considerable amount of time.  When she learns the new routine, sees that we’re heading to the ferry, she gets in the car, lies down, looks dejected, but remains quiet.

In order to have something positive to do while I wait for Greg to finish his treatments, I bring along lime green and royal blue yarn for crocheting hats and scarves for Seahawks fans.

There is a place in the lobby where cancer patients can go for information (there is a lot of it)  and to pick out donated items like the ones I make. In the Seattle area, Friday is the day many people wear their Seahawks’ colors, so my scarves and hats  prove to be popular. They get snatched up as soon as I get them finished. Plus, while I’m crocheting, the yarn keeps me warm and gives me something positive on which to focus, instead of filling my mind with worries. It works pretty well for me, though I have to admit I do a lot of worrying these days. Things are changing rapidly now.

Attempting to get into the holiday spirit, I paint a rock for Jordan.

Our hosts go to celebrate Christmas with Janine’s brother’s family and we have their beautiful home to ourselves for a few days. They left a stocking filled with goodies for Isabela and she has a lot of fun “opening” it.

Christmas comes and goes. It’s getting more and more difficult for Greg, and he has a couple extreme bouts of nausea and vomiting. His color isn’t good. His hair is starting to fall out in the back of his head, in a strange, straight line.

To very little fanfare, on New Year’s Eve, Greg turns 63. He isn’t in the mood to celebrate. Meals are no longer enjoyed. Greg has always been thin, but now his weight drops quickly. Swallowing is impossible, and there is a lot of mucous.

It’s time to start hanging the bag of Boost from a pole and have it trickle into the stomach tube for feeding. Doing this kind of feeding is emotionally challenging. We both find it difficult to mentally prepare. But of course it is a lot worse for my husband than it is for me. I can busy myself with the details, go through the motions of programing the pump, filling the bag, keeping track of how much he’s getting, etc. He’s the one that has to sit in a chair hooked up to this contraption as the concoction drips slowly through the tube into his stomach.

It’s hard to look forward to eating, especially if you have to have it dripping into a tube that goes into your stomach and it’s the stuff you vomited up the last time you had it.

He got so horribly dehydrated we had to go to the hospital for hydration. We waited for four hours to be seen in the emergency room. After having to be hydrated at the hospital a few times, the decision to order supplies for at-home hydration seems the only way to go. I will learn another skill to help Greg get through this.

We are now moving from Mike and Janine’s to another friends’ home. For January, we previously made plans to trade houses with Dennis and Joni, who live on Whidbey Island too.

Joni and Dennis trade houses with us.

It’s not too far from where we’ve been living. They will be flying to Baja and staying in our house for seven weeks. Lucky for them!

Greg is so sick now that he can’t help me with the move. He’s lying on the couch just trying not to throw up. He’s so weak. I make several trips with all our stuff to Joni and Dennis’s. How did we manage to get so much? Winter clothes are bulky, but a lot of it is related to feeding and hydrating Greg. I have cases of boost,  all the things related to his feeding and a myriad of hydration equipment. It’s quite a feat making sure everything gets transferred over there and making sure Greg is taken care of. Not to mention what to do with Isabela. In our new home we will have chickens to feed. I will need to let them out for hours at a time too. Isabela and chickens? This is going to be interesting.

The home of Joni and Dennis, our new digs for 7 weeks.

They have a rabbit too.

January 2017. We are moved in.  I’m tired. Greg is so sick and weak. Isabela is unsettled. Where are we now? What’s going to become of us? Life is definitely interesting…but oh, so very tough.

Attention. I need your attention. Especially if you are a parent. Children between the ages of 11 and 12 need the human papilloma virus vaccine.

https://www.nbcnews.com/health/health-news/silent-epidemic-cancer-spreading-among-men-n811466

Who knew? There is an epidemic of head and neck cancer among men. It’s caused by the human papilloma virus (HPV) and anyone who has been sexually active in his or her lifetime may have it. It is very common.  Some doctors believe HPV is as common as the cold virus. This is the virus that was dormant in Greg for years (no symptoms) and why he grew a tumor on his tonsil that was stage 4 squamous cell carcinoma. There are so many men affected by HPV that is causing throat cancer that it is considered an epidemic.

Please, if you have children, read the articles I’ve included with the links. Ask all the pertinent questions of your child’s doctor and seriously consider this vaccine. I know there are many young parents who won’t have their children vaccinated, but think again. Please. You don’t want this cancer for your son or daughter. It can be prevented with the vaccine. But only if you get it early like they recommend as 11 or 12 year olds. Adults cannot be protected with the vaccine. HPV does not just “go away” either.

The American Cancer Society has a lot of information about it, as well as many other reputable organizations. https://www.cancer.org/cancer/cancer-causes/infectious-agents/hpv/hpv-and-hpv-testing.html

Anyone who has ever had sexual relations, even with only one partner, is at risk for HPV. You owe it to yourself and your family to get educated. Please.

Cancer sucks. The treatments suck.

Educating yourself is painless.

https://www.cdc.gov/hpv/parents/questions-answers.html

We are getting snug in our bed in the trailer the night before his first dose of chemo and Greg tells me, “I want to show courage and be a role model for my sons as I go through this cancer treatment.” He is being so brave, and while he has not been reticent to share his feelings thus far, this sentiment still astonishes me. It takes me a minute to recover, and as I hold him close tears run down my cheeks.

Lying together, cuddling in the soft, warm sheets and heavy blankets Janine has thoughtfully used to make our bed, I have faith that we will come through this rough patch in our lives better than ever. Already we are seeing things in a new way. Cancer has opened our eyes to so many things we used to take for granted. The little things seem important now; such joy comes from those warm, soft sheets, the stars in the sky, the smell of coffee beans being ground. Thankfulness in the midst of cancer somehow comes easily for both of us. Maybe it’s the outpouring of love and support from our friends that fills all the empty places in our hearts with hope. There are so many blessings.

December 7, 2016. First chemotherapy treatment following third radiation.

Each of us have committed to certain tasks to ready ourselves, and we work in silence to get them done before morning fully breaks. I pack some snacks, our books, the trusty medical notebooks and we load up on warm clothes. We learned from our initiation how patients get very cold during chemo. The drugs have been refrigerated and when they go into the bloodstream he will most likely need a blanket. They keep the blankets in a warmer, so he’ll be nice and toasty, but I bring along his sweatshirt too. We both have on thick socks to ward off the chill. Sometime during his treatment I will take Isabela out for a walk in the hospital neighborhood, so I pack her leash and my gloves, scarf, and hat. The drawing that Lilly made is coming with us too. Deep breath. Ready.

Driving out of Mike and Janine’s driveway, Isabela thinks we are going to take her somewhere for a run, and that’s not what’s happening. Because we are going to the hospital five days a week for seven weeks, I start telling her on day one, “We’re going to take Daddy to the hospital,” thinking that she will get the drift after a few days and stop whining when we drive off everyday. It works after a few days, but not today. Her whining is annoying. Guess we’re both nervous. She settles down as soon as we get into the parking lot to wait for the ferry.

After radiation today we go to the 3rd floor–the chemo floor. The nurses are friendly, yet professional. They make us comfortable with their smiles, assurances and skill. The first treatment will happen in a private room instead of out in the open pod areas, for privacy they explain. Okay, let’s get this going. Greg looks pretty calm, but I imagine his outward demeanor is hiding his anxiety. He usually verbalizes his internal conflicts, thoughts, ideas. Today he is stoic. Neither of us slept very well, which has heightened our feelings of uncertainty. Greg rubs his lips, I keep pushing my glasses up, even when they aren’t sliding down my nose. The unease in my body makes my mind race, and I keep going over and over a check list of today’s possibilities. It isn’t my habit to play What if? That’s always Greg’s job.

Soon he is seated in the recliner and they have taken his vitals and accessed his chest port. Pre-meds have started. These are the medicines that will help his body tolerate the chemo drug, Cisplatin. They are anti-nausea meds, so we cross our fingers they will work.

Sweatshirt courtesy of dear friends from Colorado.

Greg holds Lilly’s drawing to remind us of home, and it provides him with Baja strength.

After an hour, I go back to the car for Isabela. It takes me a minute to don my heavy jacket, gloves, scarf, and hat. She is so excited and happy to finally be getting out, she is pulling on the leash. This is not what she’s supposed to do. Looks like I have some repeat lessons to give. It is difficult and painful for me because my shoulder is in such bad shape. I was supposed to get a complete shoulder replacement next month (January) at the University of Washington; I’ve been waiting for five months already, but both of Greg’s oncologists think I should postpone my surgery, so I have done that. The pain is getting so bad, but I am working on putting it out of my mind. When my dog pulls hard on the leash it’s not easy to “forget” my pain. My issue seems trivial though, and feeling sorry for myself will only give rise to guilt. Wishing to avoid anything negative, I promise myself to stay focused on how I can make things easier for Greg. It’s not always that easy, I’m human after all.

While Isabela and I make a tour of the neighborhood, I am lost in thought. It’s hard not to worry about things. Is our house in Baja okay? No break-ins? How is Greg doing alone up there in that room? How are we ever going to repay our friends for their help? Is the treatment going to work? What if it doesn’t?

Before I know it we are back at the car. Isabela jumps in and I pour her some water, but she isn’t interested. Apparently it’s not easy to work up a thirst in this cold weather and merely being walked on a leash. I leave the bowl full and return to my guy.

He’s got his eyes closed. Good. He’s relaxing. One chemo almost done; six more to go. Soon we will ride the ferry back to Whidbey Island with a contented feeling of accomplishment. One day at a time. One foot in front of the other.

The ferry on a nice day with Mt. Baker in the background.

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.

The Kangaroo Pump

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!

The technician holds Lilly’s drawing for me. I return to the waiting room and they guide Greg into the radiation machine.

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.

October 30, 2016.

The miles tick by. California, Oregon, and finally Washington. It’s all a blur. But it is crystal clear that we are being loved and supported by our family and friends. So many offers of help and places to stay while we find out what’s going to happen. I dub all “our people” members of Team Farrar. Our hearts are full of gratitude and humility.

Our final destination is close. I’m driving past the intersection that would take us to Kamiak High School where I used to teach English. Seems so long ago. We are in Mukilteo, WA headed for the ferry that will get us to Mike and Janine’s on Whidbey Island where their friend, Tyler, has generously loaned us his trailer. The trailer is all set up and ready for us on M & J’s property. Tyler says we can have it as long as we need it. Mike and Janine say we can stay as long as necessary. How kind. How loving.

It is at this point in the drive when Dr. Adams calls on our cell. I turn right onto 92nd St and park so Greg can talk to him without the distraction of road noise. I will never forget these moments. The call. What we learn.

The tumor is 4cm. The biopsy shows what the doctor thought–stage IV squamous cell carcinoma. All the surgeons who have looked at the reports concur that the tumor is inoperable.  Greg will need to meet with a radiation oncologist and a chemo oncologist right away.

So there it is. Definitive.

We are both shaking. We just sit there in our car in an unfamiliar neighborhood off 92nd St. What is there to say to one another?

~~~

Starting now, the day before Halloween 2016, we begin our time in what we’ve come to refer to as our parallel universe.

The love we receive from our team will sustain us for months of doctor visits, hospital stays, radiation, chemo, times of great despair and pain. In the next few months we will come to feel that the Providence Cancer Partnership is our home.  Our new mantra is, “We’ve got this!” We think we’re ready.

As we move forward with treatment, there will sometimes be more than we can handle; many surprises, tests of our resolve, but for now we repeat our watchword many times a day. Let us begin the next chapter in our journey holding on to each other in our parallel universe.

Our trailer home at Mike and Janine’s.

WE’VE GOT THIS!!!

Feeling no control of my own body, my own thoughts, I continue to pace the floor, going room to room without a clear purpose. I keep finding myself wondering, “What am I doing here?”

I find solace in petting my dog, cuddling with her. I keep telling Isabela how much I love her. My body is listless and I’m certain the blood has drained from it. I cannot focus on any one thing. So I sit on the steps outside with my dog and I pet her and tell her over and over again, “Mommy loves you. Daddy’s going to be fine.”

After talking to Greg this morning before he left the island for his appointment at The Everett Clinic, I realize I was confused about the events of yesterday. Greg did not see Dr. Jeffrey Adams. He saw an ARNP, Amy Williams. She is the one who called him yesterday while he was in the ferry line and told him Dr. Adams would see him and do the biopsy today. She was the one who ordered the blood work up, the chest x-ray and the CT scan. She is the one who pushed other patients aside to make room for him instantly from the walk-in clinic. In these moments of panic, dread, and fear, I imagine myself hugging her, thanking her for taking care of my guy, and being so kind, making things happen for him so quickly.

Waiting again. What will we learn today? Can I expect any good news? Are they sure they just can’t operate to remove this tumor? What if there is cancer somewhere else in his body? What are we going to do? Now I’m angry with myself for not going with him to Washington. He shouldn’t have to do this alone. What was I thinking? It would be easier for me to be there to know what is going on anyway. Why did I stay home? I’m choking on my fear. My stomach is empty, but I feel like I’m going to throw up. It must be the adrenaline coursing through my body. I’ve always hated adrenaline. That’s why I don’t do roller coasters, and yet that’s what I’m on right now. Again, I have to remind myself to breathe. In and out. Calm down.

I busy myself with chores. Nothing like the mindless jobs of cleaning house and doing laundry. And then the phone rings.

There is no good news. Dr. Adams takes a sample for a biopsy, but says he is sure the tumor is cancerous (he’s seen a lot of these) and it is too big and close to the bone to remove it with surgery. Even when he does surgery to remove a tumor he recommends chemo and radiation afterward. The results of the biopsy will take at least a week, and he strongly recommends that Greg go home, pack up his clothes, his wife and dog, and drive up to Washington right away. There is no time to spare. My husband has cancer.

I change Greg’s return flight and he comes home three days sooner than planned. He left on Wednesday the 19th of October, got a work up on Thursday, a biopsy on Friday, and he’s back in my arms on Saturday. We have a lot to do to be ready for our 1900 mile drive from the tip of Baja to the Seattle area in Washington.

The night before we leave for Washington

I don’t know how we did it, but we manage to drive away from our beautiful home on Tuesday October 24, 2016 knowing only that our future will include treatment for cancer. We have barely a small inkling of the hell we are going to experience.

On the 7th of October we celebrated my 70th birthday in style with ten of our dearest friends in Baja. It was a magical evening of fun, food, and friends.

Little did we know while blowing out that candle, that we would be plummeting into the darkest time of our lives eight days later.

On the 15th of October we learned Greg had a 4cm. tumor on his tonsil and needed medical intervention of some kind. True to his personality, he wouldn’t leave for the states right away. “I have too many things to do first.” What a stubborn man. I managed to get him on a plane to Seattle four days later on Wednesday October 19, 2016. At least this way we had a few days to make a plan of action for this important trip. What is the first thing you do in a case like this? Google “tumor on the tonsil,” of course. Pretty scary business; the information did nothing to assuage our fears.

Here is a guy who is so healthy he doesn’t take any medication. Not even vitamins. He’s never had troubles with any of the usual medical issues, like excess weight, high cholesterol or high blood pressure. His health couldn’t be better. Except for this tumor on his tonsil. This made going up to Washington to see a doctor a bit tricky, because Greg didn’t have a doctor up there.

I had been a patient with The Everett Clinic, and satisfied with their organization and care. I told him he should go to the walk-in clinic in Everett and explain to whomever he saw what was going on. He was worried that they would put him off and he’d have to be there for a long time trying to get help. But based on the fact that I had looked in and seen the tumor for myself, I told him not to worry. I assured him they would get right to it once he opened his mouth and said, “Ahhhh.” He continued to voice his concerns, but I was confident enough for both of us. “Just go,” I told him.

I made his plane reservations and arrangements for him to rent a car. Peggy, our dear friend in Seattle, opened her home to him for as long as he would need it. Our pup, Isabela, and I took him to the airport. I gave him reassurance, huge hugs, and many kisses. Now my job would be to practice the art of patience and wait to hear what he would learn. The anxiety I felt gave way to tears. I cried for the first part of my trip driving home. My churning stomach and the heavy feeling of dread–thinking of the worst case scenarios, filled me the rest of the way. Once home, I paced from room to room. I had to remind myself to breathe.

Greg followed our care plan for the next day. Peggy tried to get him to eat breakfast and sent him off with coffee, a lunch, hugs, and good wishes. His drive from Seattle on the early morning of the 20th got him to the Everett Clinic, The Gunderson Building, when the walk-in clinic opened. Checking-in was a breeze. The first doctor to examine him took action immediately. She went to the ear, nose, and throat specialist’s office across the hall and convinced the receptionist to have Dr. Adams see him straightaway. This heightened Greg’s fears, but it also gave him a calming sense of confidence. By noon he had been examined thoroughly, given a chest x-ray, a CT scan, and was waiting in a ferry line to get to Whidbey Island in order to spend time with our friends, Mike and Janine and their daughter Jordan. While he waited to board the ferry, Dr. Adams’s office called him with a time for a biopsy scheduled for the next day. The speed with which they worked demonstrated an urgency I wished to deny.

It was 2:00PM my time (an hour later than his time) when he finally called me with all this news. I was coming out of my skin with worry, and I was angry that he’d waited so long to call me. All day I’d been overwhelmed with panic–a mental numbness–not having an inkling of what was happening to my husband of 38 years.

Hearing his satisfaction with the treatment he was receiving calmed me a little, but he said it didn’t look good. I think he told me the tumor was too big for a straightforward surgery. It would not be an option. I kept asking questions, babbling, and I’m sure I was doing a fair amount of stammering.

I remember thinking, he seems almost happy talking about how he’s going to spend the night with Mike and Janine on the island where we had lived for 32 years. But when he says, “They are doing a biopsy in the morning,” I find I can’t breathe.

I don’t remember ending the phone call. I have no recollection of how I spent the rest of the day and night. At the time all I could think was, “Cancer. It’s probably cancer.”

The endoscopy shows no problem. Back to square one. Now Greg is saying he has a sore throat. Is it from the endoscopy? “Open wide, honey.” I peak in and am shocked by what I see. All those pustules. Is this strep throat? After we share the results of the endoscopy with Dr. Angulo, he examines Greg’s throat and prescribes an antibiotic. “Vuelve dentro de diez días.” (Come back in ten days.) There is clearly a horrible infection in my guy’s throat. And it doesn’t go away. Not even after the whole series of antibiotic are finished in ten days.

Our dear friends, Sean and Dori, are both veterinarians. As you may be able to tell, they are also quite the hilarious couple.

We often discuss medical issues with them. Not just regarding our dog Isabela’s issues. Our medical issues too. They are doctors after all. Most of their patients have at least four legs, but what the heck? When talking with Dori, (she isn’t mincing words) she admonishes us. Apparently we made a big mistake not getting a culture done on Greg’s infected throat. “A culture will tell exactly which antibiotic will work on this particular bacterial infection.”

Of course. Anyone knows this. Even we know this, but somehow the location where this information got stored in each of our brains is malfunctioning. Asleep on the job. Like Dr. Angulo. Why didn’t he take a swab and do a culture? Instead, he only sent the fluid from the endoscopy to the lab (to see if it is acid reflux I’m assuming) and they found nothing significant. And as far as we know, the throat infection is not related to the original problem. But this infection problem can be solved with the correct medication, so we decide to stick closer to home and go to St. Jude’s Hospital/Clinic in Todos Santos to request a throat culture. As it turns out, we never go back to Dr. Angulo.

It takes a couple of days for the throat swab sample to grow, so we wait. For someone who rarely sees a doctor, my husband is visiting many of them now. He’s not a happy camper about it either. “This is going on and on,” he tells me, “and I’m sick of it.” If we only knew what was in store for him.

Things did not progress as we hoped. Now the results of the culture come back tainted from all the antibiotics he’s been taking and he needs to wait a week before they do another culture. Get the antibiotics out of your system and come back. August is turning into September and we are no closer to discovering an answer to our original question. Why is there pain with yawning or opening wide? Greg has seen 4 doctors in a month, had two procedures, and the only thing we know for sure is he has an infection on his left tonsil.

You cannot accuse my husband of having patience. He has not been known for it, even on one of his good days. While he will learn to have a little during the next eight months, he is sorely lacking in this area at this point.

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He’s not one to “reign himself in” about his frustration either. If you have a problem with expletives, you don’t want to be around Greg when he is exasperated. This time I do not blame him for being highly aggravated, but really there is nothing we can do now except follow through with the next culture and do some more waiting.

We agree to take one thing at a time, and the second culture gives us the name of the right antibiotic. A doctor at St. Jude’s in Todos Santos writes up the prescription and none of the pharmacies have it.