Back in December, Michael had his annual CT/PET scan which revealed a suspicious spot on his liver. For two weeks we lived with dread and fear that it meant his cancer had returned and metastasized. A subsequent scan, however, ruled out cancer, thank goodness. That suspicious spot, it was deduced by his oncologist, was a remnant from the terrible infection he contracted post-surgery way back last Spring.
His doctor decided to take a wait and see approach, but alas, that suspicious spot has grown more troublesome, causing Michael quite a bit of pain and a sporadic fever. Blood work also showed his white cell count elevated, so clearly we’re dealing with some kind of infection, and the “spot” is most likely an abscess. An ultrasound last week showed the same spot on/near his liver, seemingly unchanged from when he had his scan in December. Nonetheless, since it was causing him so much trouble, his doc decided to have him admitted to the hospital this morning on an outpatient basis to have the abscess drained. Not a pleasant procedure, but it was expected that he would be in and out in a couple of hours.
Well, of course – of course! – when they got in there, it was much worse than anticipated. So I got the call from Michael around lunchtime that they were going to keep him overnight while they continue to drain the abscess and pump him full of antibiotics.
Now, please allow me a few moments of foot stamping and fist shaking. I’m tired of this one-thing-after-another. This has been a three-year ordeal now – it’s been almost exactly three years since Michael was diagnosed with cancer, and though he was declared cancer-free two years ago, the saga has still not ended. And here I am, way beyond Spring Chicken, halfway through my sixth pregnancy, and it doesn’t matter – I’m still the one who has to hold it all together, to be strong, to keep on keepin’ on. I’m tired of health problems that never seem to resolve. I’m tired of having to worry about everyone else and having nobody to worry about me – except me. I’m tired of having to tell the kids, “Dad’s in the hospital . . . again.”
Michael is going to be fine. Me? I don’t know.
After two tortuous weeks that have felt more like a year, Michael had another scan this morning – this one a more detailed, high-resolution, diagnostic scan to figure out what it was his initial scan picked up.
We were extremely grateful to get a call from his oncologist within a few hours (we were afraid we might have to wait until tomorrow or even next week to hear anything). The word is, his doctor is convinced it’s not cancer. He looked at the scan and the report, and he consulted with a radiologist and a surgeon, and none of them thinks it’s cancer. It’s most likely scar tissue and/or the residual effects of the terrible post-surgery infection he had in April. Michael asked him what the next step is, and his doctor said, “Enjoy the holidays.” He does want to follow up with more blood work in about six weeks, and possibly another scan in six months just to monitor, but the official word is that Michael remains in remission.
To say we are relieved and thankful doesn’t begin to cover it. It’s like we’ve been holding our breath, living under this dark cloud with terrible possibilities looming before us. It’s felt like life is on hold, and the tension has impacted all of us, including the kids, even though the kids have had no idea that this has been going on (with the exception of Kevin – he’s too old and intuitive to keep many secrets from at this point). It’s been difficult to feel the holiday spirit, and even though my ultrasound last week was such good news, I haven’t even been able to allow myself to get excited about the baby. “My husband might have cancer again,” repeated over and over in my head.
Now we can move on. It’s time to celebrate.
We visited with Michael’s oncologist this morning, the first step in following up on the questionable results of his recent CT/PET scan a couple weeks ago which I wrote about here.
I remember when we got that first phone call almost three years ago from the doctor who discovered and diagnosed Michael’s cancer and would eventually surgically remove it. It’s a phone call that changes you forever – both the patient and the spouse. In a matter of seconds, you lose a certain sense of innocence, a belief that certain terrible things can’t touch you. Suddenly you are reeling, the breath knocked out of you, and you wonder if you’ll ever be able to breathe again. And from then on, the sense of safety you once knew is forever altered, diminished.
The next step was to meet the oncologist for the first time, who would explain to us the staging of Michael’s cancer and a plan of action. I didn’t want to go to that first appointment with Michael. I was terrified of the news he might give us, and a cowardly part of me thought that by not facing the oncologist – who seemed to hold our very lives in his hands – I could insulate myself from whatever terrible truths there might be. My midwife is actually the one who made me go with Michael. “You have to go, Lisa,” she told me. “You can’t let him face that alone.”
So I went, and although the news was bad (stage 3 cancer which would require major surgery and a year of treatment), it wasn’t as bad as it could have been. I instantly fell in love with Michael’s oncologist. He was warm and down to earth and spent lots of time with us, and when he said, “You don’t have a foot in the grave yet, Mike,” in his New York accent, I truly had to stop myself from getting down on the floor and kissing his feet through my tears.
There was a part of me that didn’t want to go to the appointment this morning either, although I knew we weren’t going to get any definite answers. But I was afraid of which way the doctor might lean – would he seem extremely concerned? A little concerned? Not at all concerned? Would I be able to trust whatever he told us and not feel like he was trying to bullshit us or shelter us? Would he take one look at Michael and listen to his symptoms and get a grave look on his face?
But coward or not, I went. And honestly, there’s just not a lot to report. Dr. A took some blood (routine), did a quick physical exam (and didn’t find anything of concern), went over the results of the CT/PET scan (ambiguous), and asked Michael questions about how he’s been feeling.
Here are the questionable/possible issues of concern:
- Recent CT/PET scan revealed an area of concern – specifically, higher than normal metabolic activity – in Michael’s liver. The liver is a location to which the type of cancer he had does often metastasize.
- Michael has been experiencing pain in his upper right side where the liver is located.
Here are the positives:
- All of Michael’s checkups – which happen very regularly – have been good.
- Although his recent scan revealed this area of concern, it’s ambiguous at best, and could be consistent with a number of things besides cancer. The CT portion of the scan did not reveal any obvious lesion.
- Michael’s appetite and weight have remained stable and he generally feels fine.
- He’s not jaundiced, and although he is experiencing pain in his upper right side, there is no abdominal distension, nor could his doctor detect any enlargement of the liver by physical exam.
The bottom line is that we just don’t know anything at this point. His doctor is “underwhelmed” by Michael’s symptoms, but thinks the situation warrants further investigation. So Michael is scheduled for a more detailed, diagnostic scan Thursday morning. With any luck, we’ll have at least some preliminary answers before the weekend.
I’ve lost a lot of sleep and shed a lot of tears over this. Suddenly our whole life seems in a state of upheaval and turmoil again, and we have no answers at the moment. Possible pictures of a future with Michael ill and incapacitated by chemo again, or a future with Michael gone – and me with another baby on the way! – fill me with terror.
But that’s getting ahead of things. One step at a time. Right?
Things are a little surreal around here lately. The holiday season is upon us, and there’s that feeling of cheer and goodwill in the air, but underlying it is a simmering anxiety for me.
Michael had his annual CT/PET scan last Thursday. Last year when he had it, we got the results within a day or two, and it was the best news a cancer patient could hope for: “no evidence of disease,” which in simple terms means remission, no sign of cancer. This year there was a lot less anxiety leading up to his scan; all his checkups have been good, and there’s really been no cause for concern. Not that either of us were taking it lightly this time, but I think we felt pretty confident that the results would be the same as last year: no evidence of disease.
Well, as it turns out, the scan revealed an area of concern. “Uptake” it’s called, and it has to do with certain metabolic activity that could be consistent with any number of things: injury/healing, infection, and yes, cancer. It is, in fact, in an area that was directly hit by infection after his emergency surgery back in April, so it could very well just be that. The CT/PET scan is not diagnostic. It’s really more of a screening, so right now it’s a huge question mark that’s weighing very heavily on my mind. Michael’s oncologist is not treating it as urgent, but he does want to follow up before the end of the year – meaning blood work, very probably a diagnostic scan, and possibly a biopsy. Michael is buried at work right now preparing for a hearing before the U.S. Supreme Court next month, so it’s unlikely he’ll even be able to get in to see his doctor before next week. The waiting, the not knowing, the imagining the worst (though I’m trying so hard not to) is killing me.
Cancer: a friend for life.
I’m also having a lot of anxiety about my pregnancy. Hearing the news about Michelle Duggar losing her baby at 20 weeks last week really threw me for a loop. I’m only a year younger than she is, and all along I’ve been unable to shake the feeling that I have no business being pregnant at my age. Ever since I took that first pregnancy test all those weeks ago, there’s been a part of me that has expected to miscarry, and I’ve had a hard time allowing myself to get excited or attached. And yet . . . when I saw my midwife a couple of days ago, she pulled out her doppler and said, “Let’s see if we can find a heartbeat.” Well, I wasn’t expecting this little gift, as she’s more a fan of the fetoscope, which typically doesn’t pick up a heartbeat until much later. I guess she sensed that I needed some reassurance, though, and she found the baby’s heartbeat with very little trouble.
Wow, there’s really a baby in there!
There’s really nothing like it, hearing that sound for the first time. I just started crying, I couldn’t help myself.
It was reassuring, and tomorrow we’ll get our first glimpse of this little muffin, as I’m having the long-awaited ultrasound to date the pregnancy.
And yet, even with this little piece of reassurance, I know there are no guarantees. I feel like I’m never going to be able to rest easy with this one.
Tomorrow, October 1, officially launches Breast Cancer Awareness Month. October is also Down Syndrome Awareness Month, and I will be doing my part to raise awareness about Down syndrome by taking part in the annual 31 for 21 Blog Challenge. I did want to take a moment to talk a little bit about Breast Cancer Awareness, however.
I have a confession: I have become a little resentful about all the pink. Pink ribbons, pink labels, pink apparel, pink everything. And the catchy slogans and taglines: “Save the Tatas!” and “I Love Boobs!” All in the name of raising awareness about breast cancer. It’s a good and worthy cause, and the people behind the marketing of breast cancer awareness have done an excellent job of, well, raising awareness. We’re all aware. I mean, seriously – do you know anyone who isn’t aware of breast cancer? Who doesn’t know somebody who’s had breast cancer?
So what’s my problem? Why am I resentful? I’ll tell you why:
~ Because on some level, I think that all the slogans and pink products have somehow cheapened breast cancer. It’s popular, trendy almost, and somehow portrays breast cancer as cute or even sexy. There is nothing cute or sexy about breast cancer – or any cancer. Cancer in any form is devastating. It kills people, it unhinges families, it leaves people motherless, fatherless, daughterless, sonless, siblingless, friendless. It alters bodies and it alters lives. It’s serious, serious shit.
~ Somehow, it feels as though, for those of us who have been impacted by a different kind of cancer, that the wild popularity of breast cancer awareness somehow leaves other cancers in the dust. Everybody talks about breast cancer – it’s been totally destigmatized, and that’s a good, wonderful thing. But people still have a hard time talking about other cancers, like, say, colorectal cancer, which is just as deadly and devastating as breast cancer.
~ The pink products have gone too far. Everybody wants to support a worthy cause, and that’s noble. And going out and buying products that flaunt their pinkness in honor of Breast Cancer Awareness is a pretty easy way for the average consumer to feel like they are making a small difference in their own way. The truth is, however, that for the most part, that sea of pink in the grocery store and at the mall? It’s really a brilliant marketing ploy by companies and corporations. They are exploiting breast cancer and people’s emotions, and the result is an improvement in their bottom lines. Relatively speaking, very little of that money goes towards breast cancer research; most of it goes towards the companys’ profits because they are increasing their sales by marketing to people’s sympathies and fears. I know that sounds harsh, but it’s true. Check this out: Think Before You Pink.
If you really want to be supportive of cancer awareness, here are some suggestions:
- Live a healthy lifestyle! Show by example.
- Ladies, get a mammogram. Go with a friend to her mammogram.
- Get a colonoscopy if you’re due for one. Go with a loved one to get theirs.
- Pay attention to your health. Report any strange symptoms to your doctor – even if those symptoms are embarrassing.
- If you want to support cancer research monetarily, donate directly to the American Cancer Society.
- If someone you care about is diagnosed with cancer, don’t disappear on them. It’s scary and terrible to watch someone suffer from cancer treatment and/or wither away, but they need you now more than ever. What if it were you?
- If someone you care about is diagnosed with cancer, don’t do stupid things like tell them about your uncle or neighbor who died from cancer, or that this is all part of God’s plan. Totally not helpful. Bring meals. Hold their hand. Be a good listener. And understand that, should they pull through, it’s never really over for them. Ever.
We’re all in this together.
I submitted my last post to Yahoo Associated Content, and it was chosen for publication: Blindsided: Navigating a Post-Cancer Life.
I waffled about submitting it. On the one hand, would it be selling out, exploiting a very personal issue for the sake of benefitting my dreams of being recognized as a writer? On the other hand, it could help someone out there – someone dealing with similar issues and possibly feeling very alone. The latter won out; I really want to do my small part to raise awareness about the other side of cancer.
With advances in technology and medicine, more and more people are surviving cancer nowadays. That’s a very, very good thing. However, with the increasing survival rate, a sector of people is growing with unique issues that just aren’t talked about much. How to go on from cancer? How to pick up the pieces of a broken existence? How to mend hearts and psyches and families who have been bulldozed by cancer and cancer treatment?
The first, and perhaps most important step, I think, is to acknowledge it and talk about it.
Obviously, as I alluded to in that post, my own family is going through a very difficult time. It’s all rooted in the cancer Michael had two years ago, and the havoc it wreaked on our life long after the cancer was driven out of his body. For a long time, we just kept hoping that things would get better, that the pieces would fall back into place. But things continued to grow more and more difficult until we finally reached a breaking point. Things aren’t going to get better by themselves. There is help out there, but it requires a humbling of oneself, and reaching out. We are trying to pick up the pieces now, but it’s not easy.
If you or someone you care about is facing cancer, please be aware of the emotional impact of cancer, and the utter devastation it can inflict, not only on the cancer patient, but on everyone around them. There is help available, but you have to ask for it.
It’s been two and a half years since my husband was diagnosed with stage III colorectal cancer. After a year of aggressive treatment that included weeks of daily radiation, months of often debilitating chemo, and major surgery, a routine follow-up scan deemed him cancer free. You would think there would have been boundless rejoicing, a new lease on life. But two and a half years later, we are still dealing with the fallout.
It’s true that we rejoiced at his post-cancer treatment clean bill of health. And in hindsight, it appears that we even went into a post-cancer euphoria for a time. For me personally, the spouse who watched her husband face down death, everything good about our life together suddenly seemed more vivid, and I was filled with a gratitude I could hardly find the words to describe. I know now that it was a sort of honeymoon period following the hell – the absolute hell – of cancer treatment. And honeymoons are notoriously short-lived.
Towards the end of last year, things began to unravel. A young woman on a cancer support message board my husband frequented died very suddenly and unexpectedly from complications of the same cancer my husband had. This coincided with his upcoming annual scan – this would be the first scan he would undergo after a year of no cancer treatment. These two events served to stir him up into such a frenzy of agitation and anxiety that he could barely function. His scan showed “no evidence of disease” – the best news we could ask for. And still the anxiety didn’t abate. I began to think he was suffering from some form of PTSD – a delayed reaction to all the trauma he went through, physically and emotionally, during The Year of Cancer.
Since then, our life has been like riding a roller coaster, to borrow an old cliché. There have been just enough good times to keep us hopeful that things will return to “normal,” but some really low lows, and an almost constant pall of sadness and anxiety cast over our life together. There have been health setbacks for my husband – the cancer is gone, but the cancer treatment itself left him with complications we weren’t prepared for – complications which have landed him in the hospital more than once, and close to death again. There have been some horrible moments when everything has culminated in destructive rages, and our whole family is left trembling, in tears, frightened, angry, and terribly afraid that this is just how it is from here on out – goodbye happiness, goodbye dreams, goodbye safety and stability. It’s as if my husband – my kids’ father – didn’t really survive cancer – it managed to steal the best parts of him and of our life together.
Although I’m not a doctor, I still believe that my husband has been dealing with some form of PTSD. It’s also dawned on both of us of late that he is dealing with depression. Depression that is chronic at this point, and insidious.
We’ve been completely blindsided by all of this. People don’t talk about this – about what happens after you get through cancer treatment. Everyone on the outside just heaves a huge sigh of relief for you – thank god you got through that! And I think everyone just kind of hopes and assumes that life then goes on for you, pretty much back to normal, but hopefully even better. What you tend to see and read about people who face down cancer is that they either (a) die from it, or (b) survive it and then become very vocal cancer awareness advocates, participating in marches and walks, doing 5- and 10Ks to bask in their good health. I wonder, though, how many of those cancer survivors, in the privacy of their own homes, have crying jags, or sleepless nights, or bad tempers, or anxiety attacks. I wonder how many of them secretly feel like outsiders, like cancer changed them for good and they’ll never get their “old self” back again. I wonder how many of them are grieving for their old life, for their innocence that disappeared with a cancer diagnosis. I wonder how many of them find their previously stable, dependable marriages in crisis. I wonder how many of them privately swallow a dose of Prozac or Lexapro or Ativan every morning, or spend time crying and talking it out in a therapist’s office.
I’m betting more than people realize. Way more.
I think there is a stigma surrounding the mental health of cancer survivors that goes beyond the garden-variety stigma surrounding mental health in general. I think for outsiders, there is an expectation that cancer survivors live up to some ideal to show the world how to make the most of life after such an ordeal. We look up to cancer survivors – they are heroes and role models to us ordinary folks. Look at Lance Armstrong! Live Strong. Don’t let anything get you down – not even cancer. And for the cancer survivor himself, there is the perhaps self-imposed pressure to just be grateful. And to have some great answer to the mystery of life’s meaning. So we don’t talk about the depression and anxiety and in some cases, the PTSD that wreaks havoc on families, following a pronouncement of “cancer free.”
But the truth is, cancer survivors have been through something akin to war on the front lines. Active combat. Through cancer treatment, they have been subjected to systemic, long-term poisoning. They have been made to face the indignities of a weakening and diminishing body, a changing appearance, and often, physical disfigurement. They often have parts of their bodies removed, forever changing the functionality of their bodies. They are forced to rely on the help of others. For some, their medical issues create financial hardship. And through this all, they are faced constantly with the threat of death, and all that might entail: pain, suffering, leaving children unraised, bills unpaid, loved ones bereft, and a life unlived. How can anyone come out of this with his or her psyche unscathed?
More than raising cancer awareness, I would like to raise awareness about the mental health of cancer survivors. It’s not all roses and sunshine and 5K runs after cancer. The aftermath of cancer can be a longer, more painful journey than cancer treatment itself. I remember being mired in the darkness and difficulty of the year my husband was going through cancer treatment – myself suffering from depression at the time – having a hard time seeing a light at the end of the tunnel, thinking this was the hardest thing we could ever face. I lived, during that year, with an almost palpable wish for the year to just be over so we could have our life back. I look back on that time now and think, “That was the easy part.”
There is a lot of hand-holding going on during cancer treatment: doctors and professionals always present, taking care of the patient, implementing a plan of action, constantly looking after the patient’s wellbeing. When cancer treatment ends, even with the best of results – a clean bill of health – it’s a sudden free-fall. You’re on your own now. Find your way back. Assimilate back into the land of the living. Make the most of it. But how to do this if nobody talks about it, if nobody acknowledges how goddamn hard it is?
That’s why I’m talking about it now. I believe that in sharing our experiences as human beings, we help each other, by asking to be heard, and by touching someone else who needs to be heard.
Michael was discharged from the hospital yesterday morning, eight and a half days after being admitted. That’s longer than he was in when he had his initial cancer surgery, and the incision he has rivals that first one – a vertical slice about eight inches long running up the middle of his abdomen. He lost quite a bit of weight in the hospital and looks gaunt. He’s weak and sore and has quite a recovery ahead of him. But he still went to Joey’s baseball game last night. He’s determined not to miss a game. Probably not the best thing for him to have done physically, but clearly what he needed mentally.
To say it’s wonderful to have him home sounds empty and inadequate. All I know is that I feel complete with him here, and when he was gone there was a void. When you’re faced with losing someone, it’s funny how all the little grievances you have fall away, and all that’s left is how much they mean to you.
Today, though, I feel a lethargy settling on me. It’s as if the euphoria of getting him back yesterday has worn off and now I’m decompressing, processing what happened. When he was in the hospital, it was survival mode, and I was running on adrenaline. Just put one foot in front of the other and deal, because that’s just what you have to do. It was hard, and I was scared, and seeing him all hooked up to machines and in pain was awful, but I don’t think I really let myself think about how bad it might be. The truth, though, is that he could have died. He was septic and his body was shutting down. The doctor told him yesterday before he was discharged that had he not been young, he wouldn’t have made it. So why did he languish in a hospital bed in no-man’s land all day on Sunday without seeing a doctor, while they just kept upping his pain meds? He could have died. A few more hours, and he might have died. The reality of that, the gravity of it, it’s doing a number on me.
But he’s here. I don’t want to be one of those people who sits around wringing their hands thinking their life is so hard. There will always be worse circumstances, people who are faced with harsher things. And yet, I can’t help thinking . . . how much more? We’ve been though so much. How much more?
I made an executive decision last night that, sick or not sick, I was going to see Michael in the hospital this morning. It’s been awful to stay away, and going did me a world of good (and hopefully it did him some good, too). I curled up on his bed with him for a while, we walked the halls, talked and even shared a few giggles. Ahhhh, just what the doctor ordered.
Michael is making steps towards recovery and coming home, but it’s slow going. While I was there, some of his medical trappings were removed. This is progress. I also got to see his incision, which was also the first time he’s seen it, and it’s pretty significant – quite a bit longer than I had expected. It’s all put back together by I don’t know how many sutures and eight shiny staples.