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!

 

After the diagnosis, we started talking about finding our “new normal” and redefining ourselves but that’s a complex, obviously. Ken started saying that he was working on “Ken 2.0,” like this whole thing is a new software release. After a while, though, we decided that it’s more like he’s a refurbished model, a few nicks and scratches but the damaged parts were replaced and he works just fine.

For Ken, the scars are from life’s battles, the norm as we all fight through life.  I like to imagine that our scars are visual memory cues. The scar on my right hand reminds me that my sister and I played girl detective games (a la Nancy Drew) with the neighborhood kids when we were little (while running from (or after?) the bad guy, I fell over a case of beer in our garage and cut my hand open). The scar on my eyelid reminds me of how sick I was with the chickenpox I caught (from my sister) in college. The big one on my left knee takes me back 11 years to a soccer field near Monroeville, when I tore my ACL helping Tristan’s team warm up before the soccer game.

These days, scars remind Ken of cancer and colostomy bags (which sounds like bad poetry or maybe the title of a punk band).  I’ll confess that I’ve been struggling, really struggling, to understand his abhorrence for the colostomy bag. Obviously it’s not desirable but in my narrow focus, it’s way better than death. For him, it’s part of the conversation every cancer patient has:  if, to win the cancer battle, we have to metaphorically burn down the city, what have we won?  The quality of life conversation is a critical part of cancer treatment and we talk frankly about the many scenarios. For now, I will say — loud and proud — that I am emphatically still of the opinion that a colostomy bag can be part of a great LIFE and I’ll bet that most of the half a million people in the US who have a colostomy bag would agree. Nonetheless, I won’t shut down the conversations that he needs to have about death and dying.

There’s a Yevgeny Yevtushenko poem called Colours that I came across in my impressionable youth (oh, yes, I memorized it, as obsessed teens do). Phrases from it keep popping into my mind:

Fear hems me in. I am conscious that these minutes are short and that the colours in my eyes will vanish when your face sets.

Uplifting, right?!  Another poem that won’t leave my head is Separation by WS Merwin. If you are interested, both are easily available on the magical internet (again, yay, google!).

There are many silver linings in this otherwise dark cloud.

One of those silver linings, for me, was discovering just how rich I am in friends and relations.

From the moment of my diagnosis, Deb and I have received a great outpouring of support, sympathy, and offers to help. I am very humbled. I found out that I was rich in relationships I didn’t know I had, or still had.

People I haven’t seen or heard from in decades have reached out to give us comfort. Cousins and other relations whose relationships I’ve sadly neglected have sent us touching electronic missives. My work friends spent time and money to put together a chemo survival basket and have aided in so many other ways. Emails and texts have come from all over the country.

You know I am by nature something of a recluse, not someone who goes out his way to surround himself with people. That’s why it’s simply amazing to me, the number of people who have reached out to us. I had no idea there were that many people out there who even remembered me, to be honest. Again, I am very humbled–and grateful.

There is nothing like a serious illness to remind you what is most important in life–and, turns out, it’s not money, status, fame, or things like that. For me, turns out, the most important thing in life is/are the relationships that you make and keep with family, relatives, and friends.

I have not always been good about maintaining these relationships, so it is with hat in hand that I reach out now to thank you for your very kind, very gracious, messages of comfort and empathy.

For most of you who are reading this, we knew each other some time in our past. For some of us, it is many decades since and we are no doubt very different people now than that which our memories paint. But I have been remembering a lot in recent days, and your messages have made those memories vibrant, so much so that the time between then and now seems to disappear. Photos like these help me remember.

I hope that this note finds you and yours in good health and spirits–or, in the very least, I pray that the burdens placed on your shoulders are light. Take care of yourself and please remember that I hold your memory, and our relationship, precious.

Turtles adapt, too! When I started to tip him back into his clean aquarium today, instead of scrambling to stay at the bottom of the bucket like he’s done in the past, Survive-E walked to the bucket opening and slid into the water. He knows the new routine.

It’s a good thing Ken called about his rash because it’s a fungal infection at one of the tumor sites. According to the doctor, since Ken’s immune system is compromised, these kinds of things will pop up.

Thursday was our “short” treatment at the cancer center. Ken received an infusion of Erbitux (which is a monoclonal antibody, not chemo). Unfortunately, the nurse couldn’t draw blood from his port and had to give him a clot-buster (the nurse called it “Drano for your bloodstream”), which takes about 30 minutes to loosen things up. Once she drew the blood, we had about an hour wait for the lab results. After that, of course, the pre-meds were started; and finally, the actual treatment began. Overall, life being what it is, our short day was a mere hour shorter than our long day.

We learned on Wednesday that Ken has 4 more chemo treatments before the next PET scan. If you’re looking at a calendar, that means it will be May before we know how much more chemo he’ll get before the surgery.

Ken says that life is a series of learning experiences and in this case, his diploma is a colostomy bag.  At some point, we might even find that funny. Right now, however, colostomy bags are not very humorous, though we’re occasionally able to laugh about cancer and chemo. Most of the cancer “humor” that I’ve read is just terrible. However, Ken did discover a great website, cancerowl.com. It’s a funny, honest portrayal of life after a cancer diagnosis.

We cut Ken’s hair — though not his beard yet — this afternoon since it’s starting to fall out in patches. I had been planning to shave my head too but Haley and Ken both said it would be too sad, a constant reminder of Ken’s cancer. Not that we ever forget.

Ken is deeply concerned about the impact of his illness on his family. He asks me sometimes to reassure him that the battle is worth fighting, not because he’s depressed (we are all grieving) but because the battle itself takes an enormous toll physically and emotionally on everyone. Being Ken, he feels responsible for the well-being of all his friends and family. And so I remind him that it would be much, much more painful — physically and emotionally devastating — if we lost him.

I know the statistics and prognosis for people with stage 4 colon cancer, having done way more research than anyone should without knowing specific details about condition and treatment (in all seriousness, although I’m a passionate advocate for being an educated patient, if you have ever been tempted to look into the treatments, side effects, blogs, support groups, etc, be wary. You will find things you won’t ever be able to forget.) Medical research without context is not useful, unless you are TRYING to scare the bejesus out of yourself.

Statistics are just data points. We focus, instead, on each day’s battle; admittedly, some days are less an organized battle and much more a series of skirmishes, as untidy and chaotic as they could be.

Tomorrow, we have an unexpected check-in with the doctor because Ken is sporting a rash on the skin around one of the tumor sites. The oncology nurse assures Ken that rashes are good news because they are generally a sign that the chemo is working. I love that we can actually laugh when the cancer team tells us stuff like that. “Ken, you may get acne on your cheeks like a teenager; we hope you do because, statistically, people who get acne after chemo have a higher rate of success with this medication.”

Today was better than many recently. Although Ken was exhausted as he is every day, we were able to have a quick family dinner (pork burgers and veggies) before he fell asleep. We even got a little library time with Ian and Haley. That might sound odd as a treat but we all find the library very peaceful, almost a sanctuary. Ian picked out a handful of comics to read before bed. (I’m trying to encourage Calvin and Hobbes but he’s currently more a fan of FoxTrot.)

I could wish for peaceful sleeping but the zombie apocalypse dreams continue. Zombie movies are the worst (except those fantastic Jiangshi movies … and maybe Sean of the Dead … and Warm Bodies … but NOT I Am Legend).  And suddenly I see why I’m dreaming of zombies instead of failed college courses. No more zombie movies.

I’ve had probably close to a dozen ultrasounds over the years (one a really miserable internal and that’s as detailed as I’ll ever get about it!). Ken had his very first ultrasound Monday. We debated over the weekend whether it would be internal; it was. The doctor described the procedure in advance — there’s a balloon inserted and a little camera.

It seems likely that most people would NOT consider a rectal ultrasound a repeatable experience; but congratulations to Ken, his next one will occur in May to allow the doctor to monitor progression of the tumor.  I’ll leave the details about the ultrasound to the imagination; suffice to say they had to apply a topical anesthesia for the procedure to continue past the initial stage.

The whole process took no more than 10 minutes. We all met up again in the doctor’s office to review the pictures (sadly no DVD to share!). The colorectal doctor was very congenial (his office staff is not). He spent more time talking with us than actually doing the procedure. It’s likely that the original surgical plan will remain; basically, the surgeon will remove the entire rectum/ sphincter and create a stoma for Ken’s permanent colostomy bag.