Chemo Feet

The other day I was telling a friend about John's feet and the care that he takes with balance especially upon waking. This is another late gift from the colon cancer chemical regimen 5FU. And FU it is! That's the good news/bad news leftover: peripheral neuropathy. 

It's one of those things that people don't like to complain about in CancerLand. I mean, it's kinda bad form: you're alive, you're not on fire, there's no new surgery coming...so you have numb feet. But it's more than that. People with Diabetes understand. They know the consequences if you can't feel your feet--balance is shot, sports are limited and you have to look down to see if you are cut or burned or hurt.

But today I found this great article about Chemo Feet by Susan Gubar who wrote so beautifully about her ovarian cancer last year.

Here's the link. Take a look at what she has to say about neuropathy and losing touch with her feet:

http://well.blogs.nytimes.com/2013/01/03/living-with-cancer-chemo-feet/?smid=pl-share

Read About Rehab After Cancer

We are accustomed to seeing people go to rehab after an injury, after surgery and after all kinds of medical interventions--except cancer. That is until now.  In today's Wall Street Journal there is a very interesting article about rehab after cancer treatment--whether that treatment is surgery or chemo or both.

This makes so much sense. The article talks about rehab especially after chemo and its consequent side effects. Many people--John had this experience--have difficulty with walking, balance and small motor control after some of the nastier chemo concoctions. Most people just live with that or figure out their own adaptations or ways to cope. But why not a program of rehabilitation either in-patient or out-patient?

As cancer becomes more of a chronic illness things like "living with" rather than "dying from" lead us to things like rehab for cancer and chemo.

Take a look at this article--link below--and have this conversation with your doctors and oncology nurses. This may be a place where you have to be a strong advocate for yourself or your loved one. In that case print this article and take it with you!

Here's the link:
http://online.wsj.com/article/SB10001424127887324039504578263914081204892.html

Coaching Cancer

Last night a very moving moment on ESPN. Coach George Karl of the Denver Nuggets spoke passionately about his experience with cancer. First prostate and then throat and neck cancers. He spoke about being a man committed to winning and making a career pushing himself and others to be strong and win every time. He spoke movingly about the kind of winners and fighters he met in cancer treatment rooms and said, “I was not the bravest one in those rooms, many are braver than me facing those treatments for cancer.”

He addressed the live audience and the ESPN viewing audience asking for government commitment to fight cancer. And he asked that the United States government match dollar-for-dollar what is raised by the American Cancer Society and other cancer foundations.

What stood out was how much this big, strong man had suffered in his cancer treatment and was still suffering in his recovery from treatment. We so often forget that part. People with cancer have to survive both the cancer and the sometimes quite brutal treatments for cancer. That second phase can take a very long time.

Flashback

Today I drove to Hudson, New York for a business meeting. I followed the directions and pulled into the parking lot where the meeting was being held. It was an oncology center!

I signed in at the lobby desk and was directed to the conference center on the second floor. I passed through the clinic area and saw the patients and families waiting. Patients were being called in for blood work and to have their ports checked. It came flooding back.

The waiting rooms. Waiting to be called. Patients tired and anxious. Families with their reading bags and knitting and cell phones. The stress on their faces. Greeting each other with careful nods in that small community that a chemo waiting room becomes.

Sights & Smells

We went back to the Oncology Center yesterday for John’s check-up and quarterly tests. So far so good. Basic blood work was OK. But we now wait a few days for the “cancer marker”. What struck me yesterday was the sensory recall we each had at the chemo center. I could feel and taste the rooms and I could feel my body contract and prepare as I did every week we went there. The waiting and eating and waiting and watching. But I was surprised when John said, “I have to get out of here before the smell kills me”. He could smell the old smells. I smelled nothing but he had recall and recognition of the smell of the place—and the smell brought back all of his bad feelings about those months of chemo.

Love After Chemo

Chemo is over and even though some fear remains, and even though there is still a CAT scan and blood work to get through, I don’t want to miss this: Six months of chemotherapy is over. He did this with style and grace. It is true that adversity doesn’t build character, but rather reveals it and in this prolonged adversity his strong character was revealed. He did not miss one day of work. He did not whine or complain. When other people admired his courage he reminded them that he was just doing what was in front of him. He also very graciously and very gallantly said that being the person with cancer is easier than being the caregiver. The person with cancer gets all the sympathy and all the breaks. He is right about that.

He says it feels like he’s out of prison. Chemo ended just yesterday so the side effects of this recent round are still here (fatigue) and still to come (more mouth pain and neuropathy). But it is uphill from here.

Love in the time of cancer: Still love. Still time.

Bubbles

Last chemo yesterday. It hit me that it has been six months of chemo and cancer. At the oncology center the nurses blew bubbles and offered hugs and congratulations. When they were blowing the bubbles, nurse Felicia joked about making John dance, I felt myself shaking and swallowed back the tears that sat just below the surface. His six months yes, but mine too. Six months of short changing work, missing sleep, worrying about everything, scheduling our lives around “chemo weekends” and six months of fear. The fear is not over. Now come the CAT scans and the regular blood work to see if there is still cancer somewhere in his beautiful body.

Everyone asks, “Are you going to celebrate?” And we laugh in reply, “Oh yes, on Saturday when the infusion of FU is completed for the last time.”

Maybe someone who has been through this will understand. We came home from chemo and had a big fight. Out came all of the tension and all of the expectations that were hidden under, “If we can just get thru six months” and that now leave us with much less obvious but scarier medical steps to take. And too we are now left with the relationship, no longer hidden behind, “When chemo is over.” All of that, all that was hoped for, fantasized and deferred has burst on us just like the soap bubbles that came as congratulations.

The Big Eraser

It’s chemo weekend and his fatigue is kicking in. When they talk about fatigue as a side effect of chemotherapy they don’t really explain what it’s like. If you haven’t had chemo or haven’t seen someone on chemo you might think this means they get really tired. It’s so much more than that. It is as if a big eraser comes and starts to rub the person away. They get sleepy, yes and dull, yes. But they also fade and their edges get blurred. It’s not like this is a tired person but more like the person is gradually disappearing. It’s lonely and a little scary. There is a body here but not really a person.

FU

It’s chemo weekend. The infusion pump returns and the nasty drug called 5-FU. Yesterday to the oncology center for several hours then home to the visiting chemo nurse who hooks John up to the pump. These two days the chemo pet we call FU lives on John and dominates our lives. It is tiring. Tiring for him, yes and tiring for me. I am running. To work, then to the oncology center, then home, back to work, then to my night class. Groceries? Dry cleaner? Postage?

Today I feel resentful and then guilty for feeling resentful. I want to take a breath. I want to shop for shoes. I miss my life and I am afraid of losing myself. I want to be able to rest or be spontaneous; I want to call a friend. All I am aware of is what is not done: laundry, groceries. He cannot go to the grocery store or open the fridge because of the reaction to cold. I don’t want to eat and I don’t want to cook but he needs to eat.

What is hard is to sort out what is really him and what is really me versus what is cancer and chemo. Maybe he’d be this selfish anyway? Maybe I’d be this pissed anyway? It’s so hard to step back and see the good. I’m trying to remember who he was before cancer. Was he a nicer person then? Was I?

All I can think of today is FU.

My Moon is in Cancer

The problem is cancer. Stage three colon cancer and so instead of romantic dates and lunches and vacations we have surgery and doctors offices and learning about chemo. I am lover and caregiver, but I am also a writer and fierce about what is happening to him and to me and to us. I am writing this blog to tell my side of this story. I am not objective. I am not unbiased and at times I am not a very nice person. But then, cancer is not very nice either.

I am also writing this because I hope at least one person can have their sanity confirmed by this blog. Most of the official cancer resources have tried to be helpful but there have been so many gaps and so many platitudes and so very much condescension. I am also writing this because as Mark Twain said, “I don’t want to hear about the moon from a man who has not been there.” Loving a man with cancer is my moon. Take the next step with me.

Everything Works (plus recipe)

Yesterday I got my hair cut. I have gone to the same lovely spa and salon for many years. Jean, The owner, is French is wonderful at connecting with his customers. When we learned about John’s cancer and chemo I told Jean and asked if he could do something for John—thinking he’d need a much shorter hair to get ready for losing it. The day John came for his special spa haircut all the stylists and their assistants were checking him out. He is very handsome, but it turns out that they all wanted to watch because the gal cutting his hair was giving her first haircut! So there was plenty of audience to cheer her on and to cheer John up.

Because of that Regine, the woman who cuts my hair, knows the story and the situation. When I see her we always talk first about John—his hair, his chemo and how he feels. So yesterday as she’s running her hands thru my hair and we are talking about the color and whether I need highlights again—she is telling me, “You won’t believe this…” Her best friend has just started dating a man with Colon Cancer. Her friend is in her 50’s and the new man is in his 50’s and he has colon cancer and has just completed his chemo. He is happy and they are happy etc. etc.

Then Regine leans closer to me and says in a soft voice, “My friend says everything works.” Pause. Then “You know what I mean? Everything works.” I pause. And then I get it. Her friend told her that sexually—with the new boyfriend with cancer—“everything works.” I laugh. She adds quickly, “Not that it’s everything but it matters, no?”

Yes it matters, I’m glad too that “everything works”.

Recipe:

Regine suggested this recipe for cooking salmon. I made this last night and it too works supremely well:

Marinade salmon filets for one hour in a mixture of half maple syrup and half teriyaki sauce. Bake at 375 skin side up for ten minutes. Turn them over and pour remaining marinade on top. Bake five more minutes at 400. The maple will caramelize on the salmon. Serve with mashed potatoes and asparagus or broccoli.

Chemo is Coming

Tomorrow is Chemo Day again. John will spend four hours at the oncology center then wear the infusion pump for the next 48 hours. I am nervous each time. What will the blood work say? He has been more tired and his mouth is sore more often now. The pain and tingling in his hands is more frequent so I think that means that the chemo is digging in. Does that mean it’s “working”? Killing cancer cells or just killing all of his fast reproducing cells?

I am recognizing my own unsettledness on this day before chemo. I have the logistics down: I pack the bag: we take books and magazines to read, I take extra magazines to leave at the chemo center (they have terrible magazines there—all about cancer) I also pack our I Pods and snacks for both of us, and take the Blue notebook for taking notes when we meet with the doctor. In this day before chemo I am also bracing myself. I lose him during these chemo weekends and the loss gets longer each time.

He’ll be distracted on Friday, and annoyed by the pump and side effects on Friday and Saturday. The tiredness will begin Saturday so he’ll take more naps and be more drowsy. It’s hard to feel connected in those days. I get needy and so I have learned to make plans for the weekend now.

Being at home watching him sleep on the couch or being aware that he has more pain makes me feel lonely and afraid. Each time I lose a bit more of him and each time I am reminded of how serious this is. I have to watch my own anger too. A couple of sessions ago I realized that in the pre-chemo days I get stirred up and angry. I’m mad at chemo and mad at cancer but it’s so easy to forget that cancer is the problem and instead think that John is being unkind or inattentive or to start to make a case that he is not committed to this relationship. My fears stir and I flail inside. My head starts to tell me that he doesn’t love me, that he will leave me. My heart knows that cancer and chemo are taking him away.