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.

 

It’s chemo day. We come to chemo to save Ken’s life but we dread the day. It’s a confusing dichotomy.

Today, there’s a very young woman getting treatment. I haven’t seen her before which is surprising since there’s a structure and rhythm to chemo. The same people are usually together week after week. Also, she is DRESSED;  it’s the first time I’ve seen someone dress up for chemo though I frequently read about it on the cancer support sites. Ken found it distressing. Most of the patients are older than Ken, some quite elderly.

Adding to the stress, Ken has a suspicious new spot. We told the nurse, expecting that the doctor would want to see it — he did — but sitting in the exam room was a terrible, anxious time.  The doctor didn’t think it’s a tumor spot (good news, right?) but then he looked at the other tumors. Have you ever gotten “the hairy eyeball” from your doctor? It’s not a pleasing experience. After Ken got dressed, the doctor asked to look at the tumors again. He “hmm’d” and looked at me. Did my face show my thoughts, I wondered. “Are you still bleeding?”  He asked Ken. “Yes, some,” said Ken. “Hmm,” he said again. His decision:  “No change in treatment. PET scan after #6.” (We’re on #4 today.)

It was not reassuring. It’s true, as I told Ken afterward (trying to calm him), that nothing has changed: same treatment, same timeline, same diagnosis. So, why do we both feel unsettled? Ken said that he felt like he’d slipped from “treat to cure” to “palliative.” That’s not what the doctor said but I’m frightened nonetheless. I thought the doctor might stop by later. It seems sometimes like he wants to puzzle about Ken’s case and then stop by to discuss further but we didn’t see him again.

Ken slept for nearly two hours. The pre-meds usually make him drowsy, which is really good on a day like today. When he woke up, I was talking to the oncology social worker, who likes to stop by to check on us each week. She really wants me to take the kids to pet therapy. She’s concerned that Ian might not be able to express his thoughts through direct dialog. I’m not sure I agree; he’s been pretty open with me throughout this. However, I can’t see any downside to puppies so we’re going to do it.

Ken was bonding with the student nurse when I went back to his chemo lounge. Every week, we meet a new student and he talks with them for at least 20 minutes, encouraging them and thanking them for entering the profession. Today’s student nurse was a little older, male and very friendly.

By the time the student nurse left, it was almost 2PM and Ken still hadn’t eaten anything. Two weeks ago, he stopped eating the food here. The chemo has made food taste funny and sometimes the texture also turns his stomach, which is what happened with the poor unassuming turkey sandwich (it was squishy) that caused Ken to swear off cancer center food. I admit that I’m sympathetic. The food has become refrigerated, box lunches. They could not be less appealing, to be honest. On a positive note, Ken found the chicken planks from the hospital cafeteria very palatable!

 

 

 

Hope is alluring. Tumors shrink; pain and discomfort recede. These results offer a glimpse at a longed-for possibility. Cancer patients are told to look beyond the treatment, to envision life after the cure. It’s hard, though, to take that step. Looking into the future, planning like healthy people do all the time, means allowing hope to come along on the journey.

What could be bad about a cancer patient allowing him/herself to believe that the journey might not end with palliative care? Seems like that will help improve outcome, doesn’t it? All sorts of research exists regarding how positive outlook positively impacts cancer treatment.

I remember, years ago, spending 5 hours on a plane to San Francisco with a lovely woman, 20 years older than me, who was fighting round 4 of cancer. She was stuck in the middle seat and kept apologizing for the truly extraordinary amount of stuff she brought on the plane (neck cushion, book, crossword puzzles, water bottle, you name it). I’m a light traveler and held some of her belongings on my lap and at my feet, then handed her stuff as she needed it. Had it been pretty much any other stranger I’ve had to sit next to over the years, I might have pretended to fall asleep but this woman was delightful. It’s more than 10 years since that trip and I still think about her and how very alive she was.  She told me that she “didn’t have cancer.” It was something she didn’t want so she refused to “have” it. Instead, she said that she’d been infected (in a non-medical sense) by cancer and that she was determined to have it removed, to kick it to the curb like an unwanted visitor.

Somehow she overcame the sick dread of spotting a new tumor or having a PET scan that lights up like a Christmas tree. These are the things that cancer patients dread, and why it can be hard to envision the future. Some oncology therapists suggest coming up with near-future goals:  buying tickets to an upcoming play, making plans for a long weekend away. Others suggest actually looking at the future to see what it is going to be like AC (after cancer). Will you continue working at the same job? Are you getting married? Will you stay in the same house, neighborhood, town?

Obviously, it is intended to help patients move beyond the immediate “will I survive?” mindset. In addition, I think this approach might help with embracing the future self (Ken 2.0, if you will) — perhaps he’ll have to live some cancer results (we don’t need to list them but if you are curious I suggest that you Google with caution!) and needs to start to accept that.  All of this is an important part of the grieving process (stage 5 or 7 depending on which grief theory you embrace) but grieving, like cancer itself, is very personal. Ken and his family are all grieving but each of us is traveling that path alone. I grieve with Ken but our grief is separate and different. He worries about how we’ll function without him or with a changed him. I worry about how to help him accept the changes to himself.

To be perfectly honest, I am so afraid of what a future without him would look like that I just won’t consider it. There are places one just should not go and things one should just not contemplate. What is the point of thinking about that right now? If that’s the journey we’re going to travel, I will know it soon enough.  As my mama would say, I’ll cross that bridge if I come to it.

 

When I was a little girl, my mama would say that God sometimes put words in her mouth so that she’d say just the right thing. While God and I have a somewhat more complicated relationship, I think frequently about what mom said. Having cancer conversations with my youngest are eggshell events, tiptoeing gingerly across the fragile surface, hoping I don’t misstep.

Ian wants to know what’s happening to his dad but he needs to be able to control when and how he receives information. Today, after school, he wanted to talk. He told me that he thinks his dad’s cancer didn’t really “sink in” initially but that it has now. Also, though he was really troubled about it, he confessed that he doesn’t like how it has changed our lives. I don’t like it either and so I told him!

We have a deal: he’s allowed to say or ask anything.  No matter what, I’ll answer him honestly. So, when he asked me what stage his dad’s cancer was, I said, “Stage 4.” He said, “That’s really bad, isn’t it?” Then, we talked about what stage 4 means and that cancer affects everyone differently, and that treatments change all the time as new drugs are developed. “Could dad die?” He asked. “Yes,” I said. “But not right now.”

Any one of us could die “right now.” Cancer makes death more — possible? — and makes people want to know the future. “How long do I have?” “Am I going to die?” Ken says that most people envision a peaceful death for themselves but the cancer diagnosis makes him think that his death is more likely to be messy and painful. I tell him that he’s going to live into his 80s and die peacefully under a tree on a warm summer day, just like his dad.

Ken has become very anxious about my health so I went to the doctor yesterday for a check-up. I’m healthy as a horse, she told me after the exam. My blood work also came back great.  If that’s not throwing down the gauntlet with the Fates, I don’t know what is!

My definition of Hell: being forced to watch Let’s Make a Deal for all eternity while sitting in a physician waiting room.  That’s where I am right now (a physician office, not actual Hell).  Ken is meeting with the oncology social worker, learning some mindfulness techniques to help with the agitation and anxiety.

Taking the pump home is always stressful, with its audible reminder literally every minute that Ken has cancer. (Want to know what it’s like? Set a repeating reminder on your phone to go off every minute and see how many minutes it takes before you focus primarily on the alarm you know is about to go off.) On top of that, his side effects — the rash, nausea, exhaustion, and chemo brain — are increasing.

The visiting nurse came over Saturday afternoon to check his vitals and remove his pump, which helps reduce the agitation.  Picture this, though:  to visit Ken requires a walk up 34 steps to the master bedroom on the third floor. We’ve seen 3 different nurses and each has said, “You walk up these stairs every day?!”

On Sunday, Ken had enough energy to take a short walk on the treadmill (it was too chilly to walk outside) AND shop with me at Costco. After tasting a few samples, though, he was exhausted. In addition, we didn’t account for the noise and congestion, which, with Ken’s agitation, was hard to take.  Ultimately, he went to the car to rest quietly while I finished up the shopping.

Exhaustion took its toll again today and Ken went upstairs to rest when he got home. Hopefully, he’ll be a little better tomorrow. A decent night’s rest would be awesome too but I’m not sure it’s a possibility for either of us.

Chemo day has started with port problems. Our nurse did a needle stick just to get the lab work started but also gave him port “drano” again. This time, the drano didn’t work so the nurses sent us on a walk. That didn’t work either.  When Ken sat back down in his chemo lounge (he says it’s very comfy), the nurse started chattering to him about stress reduction.  Ken said “I’m not really stressed.” She was trying again to draw blood through the port and she said, sternly, “Relax!” We both laughed at that and then the blood came flowing out of the port. The success of her scolding just made us laugh harder.

Every week, now, we get copies of Ken’s lab work. We look at his creatinine level first since kidney function is always a worry for us. Then, I look at the flags, though he doesn’t like to know about them. This week, he’s got flags on white and red blood cells, hemoglobin, hematocrit, monocytes, red blood cell volume (MCV), and of course creatinine. What does all that mean? Well, except for the creatinine level, it means he has cancer.  Right now, they aren’t telling us they want to address any of the flags but at some point, I suspect that doctor will be ordering iron or a white blood cell enhancer (something like  Neulasta). We’ve heard some stories about both of these!

The oncologist stopped by. He wants me to text him a picture of one of the tumors. Ken half jokingly asked for a copy of the article if it gets published and the doctor promised to give us one. Then he said, “That’s my wife over there.” For a minute, I thought he was joking. “Your wife?” One of us asked. “Yes, she needed iron.” After he left, we looked at each other in stunned silence. I can’t explain it but somehow knowing that his wife is going through her own fight shook us both. One of the other patients said, “She’s lucky!” We all laughed, even Mrs. Oncologist.

A young man came in this morning and I mistook him for a patient support person like me. He’s actually a 6-month survivor who came in to get his port flushed. Ken says getting cancer later in life means he’s lucky too and when I see someone like that young man, I think maybe he’s right. Most of the time, I think cancer and luck don’t belong in the same sentence together. There’s nothing “fair” or “lucky” about a cancer diagnosis. There are, however, many silver linings. For example, as Ken noted recently, when they remove part of his colon, he’ll get the benefit of  weight reduction without dieting.  How much does a partial colon weigh? Don’t tell him that, even with the tumor, he’s only losing about two pounds in body parts!