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Cancer & #Chemo Recovery – a peek into the months after

On September 26, I felt odd. All day long like I was forgetting to do something.

Or supposed to be somewhere.

It wasn’t until I was trying to fall asleep that I remembered.

It was Chemo Day.

Only it wasn’t, because I’d had my last treatment for CLL at the end of August. I stopped short at knowing it might never be chemo day again, but the idea that The Chemo Era is over at least for now, was and is greatly comforting.

Although I have to keep at the back of my mind the thought that I have a chronic cancer. So it’s never really gone, it’s just under control until, best case scenario, it comes back many years later.

I tend to be an optimist, so I do hope that given my age and the tales of 20 year remissions that are becoming increasingly common, I may never have to deal with this again.

But I’m also a realist. My prognosis is intermediate. They may come up with a Lymphoma cure before my chemo time comes again, or they might not. The kind of cancer I have has an above 80% survival rate for 5 years, but about a third for ten years.

Although I don’t go by the odds, knowing what they are gives me the motivation to defy them.

How you feel after chemo is not what you might expect

If you or a loved one is going through recovery from chemo, the most pertinent advice I would have is to resist the idea that it will be anything like you expect.

You may not feel the expected surge of celebration.

You may feel like you’re waiting for the other shoe to drop.

You may feel like you’ll be holding your breath until the doctor says the word “remission” to you.

And for most of us, getting back to regular life is a journey, not an occasion.

It’s November now. I’ve been in recovery officially since the end of September.

Instead of being a period of steady increases in strength, mobility, stamina and energy, it’s been a confusing maze of overlapping issues.

That doesn’t mean I have lost my joy. It has just been a harder journey, that I thought I’d be midway through by this time.

But it’s clear that this is just the beginning.

And that the physical recovery is not the only issue I need to deal with in the months to come.

Making it through chemo is emotional in ways you may not anticipate.

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Even though I know it’ll be chemo day again one day, I can’t describe the mixture of emotions about knowing I didn’t have to go any time soon.

That I would not have to go through the days where it seemed  like I have no taste buds, or figure out how to deal with people literally begging me to eat, after a lifetime of people assuming I am still overweight because I still overeat.

Or the pain of feeling like there was something in my bones trying to chew its way out.

But it’s not just relief.

And this is part of the reason why I think we really need to change the way we talk to each other about about cancer.

Because there are so many other issues involved in cancer recovery.

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Um…. Not the least of which are the related issues outside of emotions, but we’ll come back to that.

On the one hand, there’s also a terror.

A mild, background-noise kind of terror.

About half the background level of racism or sexism, but more of a fear than an annoyance, and more of anticipation than anger.

Will it come back?

Will I make it to the one year point?

Will this other thing that they found that’s wrong with me in the course of having cancer get worse or go away with treatment?

Oh my gosh my toe hurts IS THE CANCER COMING BA- oh.

It’s just on fire.

Whew.

Seriously though.

Recovery from cancer is such a terrible time to be thinking about having another major illness.

But having more than once chronic illness has been my reality for so long that this new one is just another weight to carry.

My shoulders have proven that they are up to the task. There really isn’t any other choice.

To make it even more confusing, all the feelings and concerns aren’t in the black or white area of bad or good.

You may feel both happy AND sad about being in cancer recovery.

Not only will you have mixed emotions? You’ll need to be prepared for other people not to understand them, or even understand them yourself.

If you haven’t already planned for handling the emotional and mental aspects of having cancer, now is way past time to find a counselor or therapist and/or a community that understands.

I’ve found that it doesn’t matter if this is online or in person for me. But I’m introverted and highly sensitive. If you’re extroverted or less likely to absorb the emotional climate around you, you may want to find people offline.

Things I didn’t expect

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There’s surprisingly a minor sense of loss.

One minute there’s a team of compassionate people caring for you.

You might be half way through treatment before you see how much they can help and allow them to do so.

It’s one of the times that has become rare in Western medicine, where an attempt is made to care for you as a whole person. I didn’t have to fight for the pain medication I needed for my other ailments.

This overlapped with another issue – my ever-fluctuating weight. Curiously, I did not lose any weight on what I jokingly referred to as the “Lymphoma diet” – I hardly ever desired food. In addition, I was advised not to lose ANY weight by my oncologist, as well as the second and third opinion doctors I initially went to see.

In fact, not only did no one attempt to cop out on my care by telling me to lose weight before they could successfully treat me.

They actually dropped the facade and agreed for once that being able to move around more is the main thing that works with my weight. Instead of my diet, the focus was on my ability to move around, which after treatment, would actually help me begin to get to a healthier weight with minimal effort.

It also is helping me to lose weight faster now that I’m in recovery.

Literally everyone in my health life oriented around helping me be more mobile. And since I was able to do so, despite heavy use of steroids during my treatment, I only gained about 30 pounds, a third of which I have already lost.

They, like my family, pretty much know everything I eat, and thus realized that it’s not an issue of food, it’s an issue of movement. I hurt and so I can’t move.

On the other hand, my oncologist asked that I maintain my weight until recovery. So I had my caregivers running after me to eat, even though I’m a one-meal-a-day type of person.

I add this specific point because most people who make fun of overweight people don’t get the struggle or the science behind weight loss. Indeed much of it is a mystery. I’ve tried every diet there is.

Only when I’m depressed do I have problems with overeating. All the weight that I’ve gained has been from a period of depression, including a year when I was on bed rest for my spinal condition due to bad medical advice, but not lucid enough to interrupt the pattern of only being awake long enough to eat.

At the start of cancer recovery, you’re alone or on your own again.

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So, with cancer, you have all these people trying to help you and figure out how to alleviate the issues from your other chronic conditions one minute.

And the next you’re only seeing a handful of them once a month for a blood check and to get your port flush. You start to miss that feeling of being … figured out. Of your comfort being a priority for not just one but a team of people.

Of having your problems actually treated instead of being told they are a product of your weight when you know that your weight is a product of your health problems.

And you have to go back to the regular doctors who work as individuals and cop out on your care, unless you’re wealthy enough to insist on the out-of-network doctors who can pick up the slack and actually help you.

So first, there’s all the feels.

But then there’s the other issues that come up during the recovery period.

Recovery has a lot of hidden booby traps.

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I realized that the way cancer is – and is not- talked about informed my expectations about being in recovery from cancer. I thought that one day I’d stop having treatments, and then I would be in remission.

It never occurred to me that I couldn’t jump back into life.

This is booby trap number two, after the emotional roller coaster- not knowing how long it will take your life to return to normal.

Or whether you might have to redefine what normal is, for life.

You’d think I would know this intuitively from having other chronic conditions, that I’d apply the idea that my life was forever changed after having a spinal disorder and nerve problems and the chronic pain that stems from them.

Instead, somewhere in my mind was the idea of the cancer being … removed from me, like a surgery.

The kind of cancer I have isn’t about having tumors. Since it’s in your blood, lymph and bone marrow, the cancer circulates through your entire system. It gives you the sensation, if untreated, of your life force slowly being pulled out of your body as if being pulled out by an invisible force continuously pulling on a string.

When that string is cut by the chemo, you have days of near-normalcy that fool you into thinking recovery will be a piece of cake.

Because of the chemo cycles, you might be lulled into a false sense of expectations for how you will feel.

Chemo can take you up during the process. With the steroids in my body, I had more energy than usual, and could rarely sleep a full night. I had less stamina- I tired quickly. But I had a burst of energy first that carried me through things like walking to the car, or preparing simple meals for myself.

After the actual process, you may have a day or so when the steroids leave your system, at the same time the medicine/poison works its way through you. These would be the days when I couldn’t make my bed, and might need my meals brought to me because I couldn’t make it down a flight of stairs to the kitchen.

Later in the month, you have days of feeling better or worse and various symptoms. Then in that last week, though it varies from person to person, you might feel 70% normal, where if you do everything right and don’t strain yourself, you feel like you have a bad flu instead of cancer.

So when you’re not having treatments anymore, you might expect that as soon as you complete the last cycle of ups and downs, you’re going to have slow, steady “ups” until you’re back to yourself again.

But there’s no such thing as a straightforward recovery period from cancer.

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Like the path to success, I would learn that chemo recovery is not straightforward.

But before I could learn that, I had to unlearn my assumptions.

Chemotherapy, in my mind, was akin to slow surgery. Instead of a knife removing the cancer, my mind created the analogy of a kind of internal surgery.

And so I guess the analogy extended to recovery times. Every surgery I’ve had in my life was outpatient. I was back up on my feet and back to life in a few days or weeks.

It’s hard to come to terms with the fact that recovery for me, post-chemo, will be months, years or never.

Most likely it could take longer than the average recovery time for me to feel some semblance of normal, since I have the other chronic conditions compounding my recovery issues.

Some symptoms I have could persist for years – I’m still anemic and feel tired literally all the time, though it doesn’t compare to the exhaustion I had before being treated.

The bone pain may never completely go away. I may never be cured, and may have to live in a cycle of being treated, and then better, over and over.

Compounding the issue is that on an average day, I have hours sometimes, of feeling back to myself.

That is, until I over-exert myself.

Financial preparation is also paramount.

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Another expectation I had was that I’d be better able to address my financial issues. Luckily, Obamacare helped save both my life and hundreds of thousands, possibly even a couple of million dollars for my treatment.

Before it came along I literally could not buy health insurance, due to what was called a pre-existing health condition. Once I had a gap in my health coverage from losing my job in 2002, I was doomed. I could not get coverage except through one incredibly expensive loophole that I could not afford.

Therefore I went into business for myself and had to forgo insurance until I could pay cash.

At one point I would have to come up with $4000 every month, just to be healthy enough to work. It was a nightmare.

Then Obamacare came alone and I was eligible just in time to get covered before a series of events came along that would have literally killed me, had I not been able to buy health insurance.

For personal reasons, I choose not to share that story on this blog.

The system, like many government programs needs improvements. A lot of people are suffering who should not. But the reason for that suffering is not the program itself. It’s that the companies in the program still have us over a barrel in several ways, such as increasing rates, just as they did before Obamacare.

I’m one of many millions of people who can prove they would be dead without it though? What’s more important than the millions of lives saved, when the program has not been proven to have caused the death of a single person, to date?

We could lose Obamacare.

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So these financial concerns are more pressing than ever. It is much better to be over-prepared than unprepared, financially.

The minute you find out you have cancer is when you should start financially preparing for

  • possibly not being able to work
  • extra components to your care that may not be covered by insurance
  • the consequences of not being able to work
  • any programs that will help you make up the difference or delay paying your bills until you can work again
  • starting fundraisers to close the gaps between what you’ll be able to afford and what you need to live, continue to run your business or work part time during recovery

Start getting your coins in order at your first opportunity. It is never too soon or too late to reduce your bills, cut down luxuries, invest your savings or borrow against them.

Being financially prepared is not a choice. It’s required.

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Some days I can make steak on the stove, or write a 3000 word essay, or create an outline for a new product.

Others it’s a struggle to heat something in the microwave or sit up in bed to type on my laptop.

In the morning I might be able to ride my stationary bike for 15 minutes. I can’t manage it even every other day. And if I do, by afternoon I’ll need a nap.

I can’t go back to work full time, so thank God for the fundraiser my friends are having for me. Otherwise I’d be financially destitute as well. There are new bills I have because I have cancer, and old bills I couldn’t pay because I couldn’t work.

As an entrepreneur, it meant pausing my writing career and company, as well as my product line, and focusing on services that I could hire people to do the labor portion of, while I did the intellectual work necessary to determine what and how to accomplish a client’s goal.

Luckily my business was already set up this way. Unluckily it eats most of my margins. So I’m operating on a budget about 25% less than the bare minimum my family needs to function.

Recovery, however, is finite.

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The most frustrating thing about the recovery period after cancer is that there’s no way to predict when it will be over.

Some people in relatively good health will only need three months to go back to a somewhat normal life.

I’ve heard of people in recovery a year before they realized that however far they were in the process was their new upward limit. And of course there are some whose cancer comes back and never goes away again.

But people do recover. And even people who will have to be in treatment for the rest of their lives reach a new normal, whatever that normal is.

If you are lucky enough to reach a recovery period, remember that you get to feel however you feel. No one – even if they have had cancer- can tell you how to have cancer or how to recover from it. They may give you advice, and you may even take it.

But you’re the only one who knows what your situation is, how much you can take or how fast or slow you should go.

Plan for what you think is the worst recovery situation. Hope for whatever the best scenario is and strive for it as a goal.

There are no guarantees about how it will work out. But you do have control over your own actions, feelings, thoughts and responses. I focus on that.

The rest will have to take care of itself.

 

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