Our lives revolve around Thursdays. Either we’re preparing for Thursday’s arrival or Ken is recovering from Thursday’s treatment.

This Thursday, we saw the oncologist and, as expected, he ordered the PET scan. (His request:  Get the scan between next week’s Erbitux and the start of treatment 7.) The doctor is going to take the PET scan results to the tumor board so they can discuss next steps in Ken’s treatment. Officially, we don’t have an oncology appointment for another month but he’ll follow up with us during Ken’s chemo to discuss the PET scan results. In essence, it means that chemo will continue for at least another month.

I got a copy of the first PET scan and report to give the colorectal surgeon but of course I also kept and read a copy. (Ken has not read it.)  A good amount of the “usual” colon cancer information does not specifically apply to Ken which makes googling for advice less reliable. The specifics from Ken’s PET scan help, as does having medical professionals in the family (thank you, my dear!).

Chemo makes him cold but Thursday it was so bad we had to cover him with two heated blankets. While he was sleeping, I went down to the cafeteria to see if I could find a treat for him. A couple weeks ago they had pecan-coated tilapia. Thursday, the specials were open face roast beef sandwich (soggy bread, ick!) or spinach and feta calzone (too heavy). Fortunately, they also had chicken rice soup, which he seemed to enjoy.

Ian’s birthday party was last weekend. He and his two besties went bowling, as planned. There were no turkeys but lots of fun with the pins. Then, they played in the arcade and cashed in their tickets for some candy and three pairs of handcuffs (!). They fell asleep watching Avengers and ate pancakes for breakfast. Perfect, low-key party for my double-digit boy!

 

So much kindness, from friends, family, caregivers, and strangers …. hugs from the nurses, cards and care packages in the mail, dinners brought to the door. The unlooked for generosity and kindness has provide a lift to us that is impossible to describe.

Sometimes Ken speculates about the lives of the people we pass on the street. He sees others as being “carefree” because they don’t seem sick. On the other hand, as a person who is not sick, I can’t agree that they are untroubled. Most of the really awful sorrows I have experienced have resulted from outside forces — illness, death, abuse. None of these have been by my hand and I’ve looked pretty healthy (maybe a little tired),  certainly not infirm. Going into “why me/why Ken” territory is worse than useless but sometimes it is hard to shut off the inside voice that wants ANSWERS.

This week is Ian’s birthday. He’ll be 10 years old and wanted a sleepover with the two friends in whom he has confided. Noise and strangers are triggers that we work to avoid right now but two friends should be okay. I’m going to wear them out doing activities away from the house (Ian wants to go bowling at Fun Fest – for non-Pittsburghers, that’s a games & bowling alley with black light, cheesy but also fun). When we get back to the house, I’m going to tuck them into Ian’s room with movies and snacks, no video games, though; they are too noisy.  I wish … but maybe not. Wishing is just making a list of things that will make me sad.

Ian and I have been gardening when the weather is good and stripping wallpaper in the bathroom when it isn’t. We like the gardening more! The bathroom needs to be painted for sure but gardening — spreading mulch, planting flowers, trimming the roses — feels like an oasis of positivity in the desert of our days.  We are all struggling with the relentlessness of cancer treatment. The chemo symptoms are getting continuously more uncomfortable (chemo treatment is cumulative which just means the patient should appreciate how they feel this time because next time they’ll likely feel a little or a lot worse).

The Erbitux rash on Ken’s face is raw, like he spent 6 hours watching a soccer tournament in direct sunlight without sunscreen. The doctor said he can’t use anything on his skin that contains alcohol (we discovered too that it burns like mad crazy on his skin). I have never paid much attention to the ingredients of my skin care regimen but now I know that nearly every popular skin cream contains alcohol. We found one (Bag Balm) that seems like a good possibility but he can only use it at night (it’s really thick and sticky).  We’ve got a Neutrogena face cream and Udderly Smooth skin cream (its packaging is cow-spotted, how great is that) on rotation right now during the day.

Next week is chemo #6 and our monthly doctor appointment. I assume we’ll also schedule the PET scan at that appointment. We can’t tell whether the visible tumors are improving. Some days it feels like they are growing; they don’t seem to be shrinking. Will the PET scan show the cancer responding  to treatment? I guess we’ll know better in two weeks or so.

Apologies for the utter silence: as much as I wanted to write, it was a tough week and my resilience bucket was more empty than not. Since the intent of this blog is to communicate, not to depress, silence was the better option.

Today, however, my resilience bucket has thankfully refilled itself and I can tell you a little more about life in cancer city.

As I’ve said before, when you have cancer, you are hyper-aware of body nuances that most of us disregard. Little crick in your neck? I’d think I slept wrong and unless it was sore enough to require Tylenol, I’d just stretch and move on. That crick in the neck for a cancer patient means worry over a possible new symptom, the spread of cancer. Don’t believe me? A little Google action is all you need to see how common it is. Because chemo causes a wide variety of symptoms, there are regular adrenaline rushes and crashes as pains, bumps, rashes, etc come and then go. It’s exhausting to be continually in the midst of a fight or flight event.

Today, the port worked well; unfortunately the syringe failed. That unhappy combination resulted in blood splattered on everything —  the nurse (thankfully wearing protective gear), the lounge chair, Ken, the floor. We laughed about the port choosing today of all days to work smoothly. Every single other day, if the syringe had failed, there would have been no repercussions since the initial blood draw attempts have all been empty of blood.

Ken has re-gained about 6 pounds, due in large part to the support of his community (Thank you!). At his weigh-in, we joked that he’s wearing his heavy lounge pants today but the tech was having none of our nonsense. Last week, she weighed him twice. His weight loss was so significant that she didn’t believe the initial result. This week, she gave a nod of approval at his weigh-in. Efforts validated!

Last Saturday was pet therapy. We were given the impression that there would be several dogs but in fact, there was one small charmer named Brodie. We enjoyed his company very much. There were only 3 families in attendance and we spent a significant portion of the hour and a half looking at each other awkwardly. We’re still deciding if we’re going to keep attending for the next 8 months. More to come on that, I guess!

I had a terrible call with Highmark customer service this week, the first ever. In all the years I was a Highmark employee, I never had any trouble. In the almost 4 months since I moved to the COBRA group numbers, I have had at least a dozen claims denied in error and lost dental benefits (I had to call twice before we had our dental benefits back).

Anyway, I won’t disclose the CSR’s name (oh, yes, I remember it) but here’s a brief paraphrased synopsis to show you how the discussion went. I called due to yet another claim denial, this one for radiology services.

Deb: My husband, stage 4 colon cancer, has a denied radiology claim associated with his PET/CT. Can you tell me why it denied?

CSR: I can’t answer that question without disclosing PHI which would be a violation of HIPAA.

Deb: As I said, I know the diagnosis and second, all I want to know is why this denied.

CSR: I can’t answer that question without disclosing PHI which would be a violation of HIPAA.

Deb: Is the treatment covered by his benefits?

CSR: I can’t answer that question without disclosing PHI which would be a violation of HIPAA.

Deb: Can you submit for re-processing? I’m pretty sure this denied in error.

CSR: I can’t answer that question without disclosing PHI which would be a violation of HIPAA.

Deb: Thanks for your help.

This encounter was a test of my ability to remain courteous and when I look back, I am pretty sure I failed. And that makes me sad.

It’s a slow cancer treatment day; the nurse said I can sit in the cancer lounge next to Ken because the whole row is empty. I tried it out (confirmed comfy!) but couldn’t stay in it. Sitting in the cancer lounge feels oddly like I’m tempting fate. (I know how weird that sounds; I’m pretty confident, in my rational mind, that I could not get cancer from sitting in a chair!)

Today is Scholastic Book Fair set-up day at my son’s school. I’ve been the book fair chair for 5 years (did I just validate all your suspicions of my nerditude?!) and will be going to help with setup after chemo. Ian’s going to stay after school to help. He’s still having a rough time with “friends” at school. I think his resilience is low and that’s making it hard for him to handle nonsense that he would normally ignore. Also, Ian hasn’t told anyone except his bestie about his dad’s cancer. Maybe if he did, the kids would be a little kinder. I don’t know.

We asked his older brother and sister for advice about the latest experiences. Tristan told his brother that Ian owns whether or not other kids can talk to him and that he has the right to say “I’m done with you” to anyone. (Good advice for all of us, I think.) Haley said she planned to cut class to go to his school and punch the kids who are messing with him. (Violence may not be the answer but the mental picture of Haley storming the 4th grade classroom made me laugh.)  I am proud of them for having each other’s back so thoroughly.

Today’s movie quote:  “I’m just one stomach flu from my goal weight.” (From The Devil Wears Prada!)  Ken’s down 11 pounds since last Thursday. Caregiver FAIL. The nurse gave us some suggestions, some options to tempt a chemo palate (Ensure in a milk shake, peanut butter on apples, meals every 3 hours). If his weight isn’t better next week, we’ll be getting a call from the dietitian but at least for this week, the doctor approved continuing treatment.

We managed to get Ken’s blood flowing through his port this morning for his blood work. The nurse was having trouble with it but relaxation techniques worked.  Odd, right? It doesn’t seem like tension should be able to prevent blood draws. I guess stress effects are subtle as well as obvious.

Ken’s colorectal surgeon wants a copy of the PET/CT scan. This should be a common request and an easy process, right?  The lady I talked to at the hospital was super nice but “oh, oh, you need the scan AND the report?!” “Yes, I need the actual scan and the report.” “Wow,” she responds. “I hope you don’t need it soon. That’s going to take some time.” Aaaand, I’m picking it up in a week. Good thing it wasn’t urgent because pitching a fit is stressful.

Did you know that stress can cause dry skin? I have alligator hands, seriously! It doesn’t seem to matter how much cream I slather on them. I finally did some research because right now my skin is in worse shape than it is in the middle of winter. Sure enough, it’s another subtle effect of the stress cancer places on a family. Ken also has very dry skin but his is a side effect of the medication to treat the rash caused by chemo. Yep, that’s right; the medicine to help combat the chemo causes severe dry skin. Someone warned me that we would spend a lot of energy fighting the effects of chemo and we do, we really do.

The medical team took Ken’s weight loss seriously. We now have some recipes, three samples of Ensure, some over the counter medications and a prescription. I also got a recommendation for a website that offers tips for managing chemo symptoms (such as food disinterest).

 

 

 

 

Ken often says that no one cares for the caregivers. He’s concerned about me but I have to disagree. The notes, texts, care packages, dinners, and treats that Ken receives from his friends and family — all the love that his community expresses for him — provide such comfort to me as caregiver.

It’s very stressful some days, especially “chemo pump weekend,” when Ken is exhausted and nauseous. Ken uses music to relax as much as possible and has a sweet setup in the bedroom to stream his choice of the moment. The treadmill and the yoga mat are my (mostly) daily crutches. If you are looking for a non-public yoga option, YouTube is a great source for free Yoga videos (Yoga with Adriene!). In addition, we’ve all played around with coloring — adult coloring books and coloring apps for our phones. Lately, I’ve been carrying yarn to our doctor appointments and crocheting granny squares. It’s great for my fidgety fingers and at the end of the work, I will have a chemo blanket!  I actually saw (honestly, with some horror) a recommendation online to choose the granny square color according to the crafter’s mood. Imagine what that afghan would look like for us — lots of stress and grieving colors, I think!

Ken continues to struggle with food options. Some days, a banana smoothie appeals to him (Here’s our recipe, sized for the Ninja single serve cup: 1 cup plain greek yogurt, 1/3 cup orange juice, and 1-2 bananas. I also have a “protein” version, a peanut butter/banana smoothie:  1 cup greek yogurt, 1/3 cup apple juice, 1-2 bananas, and 1 tablespoon smooth peanut butter (we use organic for this because it’s a little runny, perfect for smoothies).

It’s hard to predict when something will taste wrong to him: sometimes a suggestion will sound good but the smell will bother him (sugar snap peas, which he usually loves) and sometimes he’ll start eating (ham and potato soup, scrambled eggs) and “nope,” suddenly he feels sick. We have good anti-nausea medicine but once a food turns his stomach, it’s doomed. I totally understand that. While tortilla chips no longer make me sick, there was about a two-year period after a particularly bad experience on a road trip, when I couldn’t even stand the smell of them.