Weight-loss weekend

The last three days of the week went so well, I started deluding myself once again that everything was all right and cancer only a bad dream. I ate and digested normally and went to work on Thursday and Friday, not entire days but almost, and while I didn't have the sharpest focus, I was ok to do what I had to do. I went to see the oncologist on Thursday and my family doctor on Friday and ran errands without problem. The doctor said that while my blood values weren't normal yet, they're closer to the normal range than to their lowest values measured four weeks ago. What's not to like?

On Friday afternoon, in keeping with the nutritionist's advice of copious snacking, I ate half a bag of cashews. At night, I all but collapsed again. I can't be absolutely sure it was the cashews but it must have been. Everything else I ate I had already eaten over the course of the past two weeks, and it hadn’t done me no wrong. After the cashews, I spent a night of misery.

I woke up every hour or so, sometimes more frequently, with the need to visit the loo. Diarrhea had struck me hard. My gut was being cleansed as if Gwyneth had provided her detox drinks again. It was all liquid. My gut strained and gurgled, as if liters of water were washing down, though I didn’t drink a thing. By Saturday morning, I was getting a bit concerned but I was too tired to act on it and spent half the day in bed.

By afternoon, things seemed improved. The intervals had lengthened, and I felt up to getting up and going out. It was just in time: a friend had announced his visit for the afternoon. I got to the train station only a couple of minutes late. I felt optimistic again. As a few things before, I’m overcoming this, but when we sat down for dinner later, I could only down plain white rice, and not much of that either.

I spent the next night getting up a few times, with the same symptoms. Diarrhea, an upset digestion, and general fatigue. At one point, out of nowhere and with seemingly no trigger at all, I started vomiting a toxic looking orange liquid. I filled the boy's potty to capacity, and went back to bed.

Today was slightly better, though I spent most of it in bed, too feeble to do much. Whenever I got ambitious, I was taken back down by violent squalls of pain in my gut. This is not something that I experienced after surgery. Where does the pain come from? Right after they removed half my colon and scraped the peritoneum clean, there was soreness inside me and some pain made sense. But now, three weeks later? I’m at a loss.

In my despair I called the hospital, but the emergency triage nurse held me back. The surgeon would be much better placed to help me on Monday, and why don’t I rest the night at home and see how things develop? I’ll call again tomorrow morning, no matter what, because I’m getting slightly concerned here. I’m supposed to start chemotherapy in a week, and I’ve lost most of the weight I’ve put on since the surgery. I’m not exactly at my strongest.

Dead man walking

The consultation started with good news that wasn’t exactly news.  Surgery had been a success.  The primary tumor and all visible metastases are gone.  I am R0.  No residual tumor can be detected.  The oncologist further said that my blood was free of tumor markers.  This was not good news, just an observation.  My blood had been clean even when the tumor was proliferating in my colon.  Yet another sign that my case is a bit unusual.

The oncologist was impressed with my progress after surgery and half surprised that we were talking about chemotherapy a mere two and a half weeks after the operation.  I took this as good news, but it wasn’t.  Or maybe it was good news on a small scale while the outlook overall is still bleak.

In ten days, I will start chemotherapy.  It’s the obvious next step and the only way of getting rid of the cancer, but the oncologist was rather negative.  “Your chances of a cure are slim.  Some might say very slim.  Our primary objective should be extending the good life you have left.”  This is not what I came to hear, and it was quite a whammy to start the consultation with.  But I do appreciate honesty and bluntness.  What’s the point of ambiguity in such a situation?

There is some ambiguity because of the option of doing HIPEC (hyperthermic intraperitoneal chemotherapy).  In this procedure, heated cytostatic drugs are sloshed around the ventral cavity while the patient is anesthetized and cut open.  This can improve the therapeutic outcome in patients with cancers that metastasized directly and exclusively into the abdominal cavity, patients whose bloodstream and organs are clean.

I’m a bit confused as to why I shouldn’t benefit from HIPEC.  I seem to tick all the boxes.  Clean organs.  Clean blood.  Messy peritoneum.  But there’s more to it.  The oncologist told me my PCI (peritoneal carcinoma index) was only 10-11.  HIPEC has been shown to be beneficial only in patients with a PCI between 12 and 16.  For all others the risk of another major surgical intervention outweighs the benefits.

I haven’t read up on what the PCI is, how it is calculated and what the error bars on the reported numbers are.  It seems to me that I’m not that far away from the range where HIPEC is indicated.  How can the doctors be so confident in excluding this option?  Maybe I need a second opinion.  On the other hand, do I really want to have my gut slit open again?

Instead, we discussed two options for chemotherapy, one milder, the other one harsher.  The milder version makes it easier to undergo therapy.  The harsher one might prolong good life (but probably not total life).  Which one would you choose?

The decision was easy for me.  Prolonging good life is not interesting to me.  Dying gracefully holds no appeal.  I’m here to survive.  When the doctor said that the harsher therapy would marginally increase my slim chance of survival, I quickly chose pain.  Sign me up for half a year of misery!

Now came the delicate business of squaring chemotherapy with my traveling schedule.  I didn’t want to give the impression of wrong priorities, but I needed to squeeze the next four trips in.  I’m looking forward to every single one and will draw strength from them.  Good thing is that they’re all increments of two weeks apart.  A cycle of chemotherapy takes two weeks, with one day of infusions, two days on a portable pump, a few days of side effects, and the second week relatively painless.

The oncologist was accommodating.  He scheduled the first chemotherapy session two weeks before my next trip, with an extra week of recovery to make sure I respond well to the therapy and don’t suffer from debilitating side effects.  The second session would start right after I’m back from that trip, and so it would continue, neatly enclosing trips to Singapore in December and Thailand in January.

Maybe I do have my priorities wrong.  But if I’m a dead man walking, as they claim, I should at least walk where I enjoy it.  And if, against all odds, I do survive, I’ll have more stories to tell.

Oncology questions

Today I will be back at the hospital for the first time in nearly two weeks.  The oncologist will update me on my condition and probably also outline a schedule for chemotherapy.  It's good to talk; I'm quite confused about this cancer.  To get some clarity, I have prepared a number of questions that I'll take with me to stimulate the discussion.

• What caused the colon wall cells to run amok?  Were any mutations found in tumor suppressor genes, kinases, etc.?
  → There are no mutations specific to hereditary colon cancers.  This is good news for the family.  There might be spontaneous mutations in regulatory proteins.  The doctor didn't go into specifics and I didn't press.
• Do I still have colon cancer?  The tumor is gone.  What do I call my condition?
  → I most definitely still have colon cancer.  The metastases were derived from the primary tumor, as are the micrometastases and free cancerous cells that chemotherapy is supposed to kill off.
• What are the chances the tumor has spread beyond what we have seen and ruled out?  What are the chances it will?
  → The oncologist thought only the liver is likely target.
• Will treatment focus on the peritoneum where the metastases were found?  How is the rest of the body kept clean?
  → Chemotherapy is systemic.  The oncologists didn't think the more localized HIPEC treatment was worth the risk as it's unlikely to improve my prognosis.
• I will probably not be strong enough to ask the question of whether we are talking curative or palliative chemotherapy, and in the end it probably doesn't matter.  I'll take everything I have to do as a step on the way to a cure.
  → Here, the doctor helped, if that's the right word.  He spoke of life-prolonging and quality of life-increasing therapy.  The chance of a cure is very slim.
• Will my health insurance cover the treatment?  There had been some doubt about the cost of one of the antibodies.
  → Yes.  This is a civilized country.  Everything is covered beyond the annual deductible and my 10% share.
• During earlier discussions, the surgeons and the oncologists were in agreement that my case (of extensive metastases in the peritoneum but not in organs) was highly unusual.  If I need to lighten the mood, I could ask whether I might be the basis of a case study in a clinical research journal.  I'd even help write the paper if I can have co-authorship.
  → Highly unusual for sure, but no word of a joint paper yet.
• A similarly ridiculous question (because I know the answer) is whether I could be present during the next Tumor Board meeting discussing my case.  I'd even wear a white coat.

Before I go to the consultation today at eleven, a quick general update:  Yesterday was a brilliant day.  In the morning, I ripped off the remaining stickers that covered the cut down my belly.  It didn't hurt, and the cut looked nice.  I weighed above 58 kg without any clothes.  I ate (not outrageous amounts but a lot) and felt good about it.  No breakdown like two days earlier.  I didn't even need to rest.  It felt almost normal.  Not eating too much might be an important point.

Gaining weight

I can feel progress.  Sometimes on some days I feel almost 100% normal.  I am full of energy, think clearly, walk around with a purpose.  The bathroom scale shares my optimism.  It’s getting very close to giving me a big 6 in return for my efforts with the calories.  Life is good.

Then there are other times.  I tend to lie down after meals.  My body complains when I skip the rest.  From time to time, about once a day but sometimes more often, a piercing pain burns through my gut.  This must have something to do with digestion, but it feels as if the pieces that were stitched together when the tumor was removed are coming apart.  This can’t be, and the pain doesn’t stay long.  If it did, it would be quite difficult to take.

Yesterday, two weeks after my operation and one week out of hospital, I made another effort at bringing normalcy back to my life.  I took the boy to childcare and then the bus up to work.  The bicycle is still out of the question, much as I’d love to.  At work, I sit or stand at a desk most of the time.  Sometimes I’m in meetings, sometimes I walk around.  My job is far removed from manual labor.  I don’t have to carry anything beyond the limit of 5 kg that the doctor set me when I left the hospital.  Working isn’t much more strenuous than resting at home.  Or is it?

After some catching up on accumulated emails and tasks, I had a big lunch in our cafeteria, chicken saltimbocca with risotto and grilled zucchini, and a front row-seat to our monthly company-wide assembly that followed.  Listening to company news, sales figures, strategy updates, product developments and new technologies might be like sleeping, but I had the uncanny feeling of missing out on my nap.  Something was brewing down there, and it didn’t feel good.

I hobbled back to my desk after the meeting.  I wish I could have called it walking, but I wasn’t.  Holding on to my mouse, I survived another hour or so but eventually had to throw in the towel.  First, I lay down in one of the private rooms my company provides for whatever reason, maybe exactly this one.  I didn’t find peace there.  Half an hour later, I made my painful way back home where I collapsed in bed.

Strange that the bed didn’t provide any solace.  I couldn’t lie on my back.  It felt as if my belly were stretched to ripping.  I couldn’t lie on one side (instantly uncomfortable), and I couldn’t lie on the other one (not quite as bad but not pleasant, either).  All I could do was roll up in the fetal position of those who are near a painful death.  I arrived in this position at four and stayed there, interrupted by frequent and futile tossing searches for comfort, until ten.

At six, when Flucha came home with the children, she was rightfully concerned.  Maybe I should have been as well.  Who knows what the reason was?  I didn’t.  I assumed it was the big lunch and the skipped rest, but I had had big lunches during the weekend without any problems.  With every passing hour, I regretted not having called the hospital for information and reassurance, but I never did.  At about ten o’clock, after I must have slept for half an hour, all pain was suddenly gone.

Did I do too much too early?  Should I work from home?  Should I stay in bed all day?  Or was it just that lunch was too big?  I’m in a bit of a dilemma here.  I need to bulk up to be strong during chemotherapy, but I also want to take it easy on my digestion.  Most of the weight I’ve lost during the hospital stay seems to have come from my legs.  They look like sticks.  I should get back on my bike to get it back, but I’m not allowed.

I have eaten large amounts over the last seven days, but I’ve gained only minimally.  When your body is used to maintaining its weight, it’s not easy to make it suddenly gain weight.  A friend suggested buying a women’s magazine and doing the opposite of what its diet pages recommend.  A valid point, but eating 500 kcal of cream yogurt right before going to bed is probably already close to the worst a dieter could do, and it doesn’t do me much good.

Cold heart

I have often been accused of being emotionally challenged, of having no feelings or at least not knowing how to show them.  These accusations didn’t exactly miss their mark.  I’m not one for excessive enthusiasm or despair, and I don’t like to get carried away.  I don’t worry about what’s outside my control.  The only time I get nervous is when I speak without good preparation in front of an audience.  This is why I asked few questions during scientific talks.

Sometimes I wish I were more in touch with my feelings, more emotionally alert.  There can be no doubt that I’ve messed up many interactions and missed out on a few good relationships because of my insensitivity.  Some encounters resolved themselves years later to have been much more than I had perceived in them.  I’ve often wondered if there was anything I could do to develop emotional skills.  What does it take to become less robotic and more empathetic?

This question is now moot.  In this Tour de Cancer, the tables seem to have turned.  I’m cool when no one expects me to, and that’s a good thing.  I think I cope better than average because of how I am.  During the initial diagnosis, the medic asked me if I needed emotional support.  She wasn’t talking about those docile animals that go viral when they try to board a plane but trained professionals, available to me at any time I might feel fate too heavy and needed to talk.  Thank you, I said, but I’m fine.

At the end of the consultation before the surgery, the surgeon asked me if I was nervous.  She emphasized that it wasn’t clear what would be done to me nor how my body might react to it.  I said no, not at all.  Instead of leaving it at this, I should have asked back if the surgeon was nervous.  After all, she’d have to perform an operation under conditions of uncertainty.  All I had to do was lie on the table, drugged, anesthetized, unable to notice or feel a thing.  When I’d wake up it would all be over and I’d know the result with a clarity that my imagination could never provide.  Why would I be nervous?

During chemotherapy, the questions and sincere offers will come again, but what’s there to talk about, really?  I have cancer.  That’s a fact.  In this I’m not special.  I’m one of millions.  A large number of doctors is taking care of me.  This reassures me.  I know the next months or even years are not going to be easy, and maybe not even successful, but this is no reason to get worked up, worried or freaked out about.  I cannot influence the outcome much except, I believe, by a positive outlook and placeboic optimism.  Worries have no place in my life.

In many ways, Flucha is the exact opposite of me.  She empathizes, sees herself in my situation, worries about what might come, afraid of what might I have to endure.  In addition, she has to shoulder most of the weight of taking care of household and children.  I haven’t been of much help during the last few weeks.  Now that my mom has returned back home, it’s all her, and it shows.

Flucha is frazzled, anxious and tense.  She takes care of everything, shopping, cooking, cleaning, feeding the children.  At the same time, her mind runs in circles, creating, analyzing and dismissing different worst-case scenarios.  She obsesses and frets.  I tell her to relax, take it easy, worry about what is (nothing much - surgery was successful, chemo hasn’t started yet) rather than what might be, but it’s of no use.  People don’t control their feelings like a machine.  It’s time I get better enough to at least help her in the house and give her some moments to herself, for her to find peace.  We will need all our strength.

Best wishes

So far, very few people know what I’m going through.  With this blog, I might have revealed my battle with cancer to the world, but I have told hardly anyone about it, and the link is not obvious.  The blog hasn’t gone viral.  Readership is probably limited to those few close friends going back years and decades with whom I have shared the news and the blog’s URL.  They deserve to know and to have a chance to follow my journey – as closely as they choose.

At work, only my boss and HR know.  As my prolonged absence due to ill health is already causing concern and probably also speculation, I will let my colleagues know during group meeting next week.  I want to reassure them that I will try to be the same person at work that I’ve always been, doing my job with the same enthusiasm (though possibly not quite as much energy) as before.  I don’t want any special treatment.  For this, I go to the hospital.

Going public with tragic news means turning personal drama into everyone’s story. What the audience does with it is up to them.  I have no expectations.  The Guardian had an opinion piece today about the questionable merits of sadfishing, a term I hadn’t encountered before that is defined as “the posting of an emotional message on social media in an apparent attempt to attract sympathy or hook an audience”.  This is not what this is about.  The point of this blog is not to solicit pity or write a gripping narrative that makes you thirst for the next post.  Neither is it to elevate my ego with the number of page views or comments under a post.  The topic is too serious for this.

This blog has two main objectives.  The first, as with everything I write, is to keep a memory of things too precious to forget.  I try to be honest and unfiltered, with medical facts as well as my reactions, physical and emotional.  Writing the first ten posts or so gave me something to do after surgery.  It might be similarly useful during upcoming chemotherapeutic infusions.  The second is to share news and developments with friends without having to write the same email a dozen times.

This second point is behind today’s post.  From my friends, I got a dozen email replies to the initial news, each warmer and more heartfelt than the one before.  How do I respond to these emails?  What do I say to a dozen offers of support, to promised visits and the most unexpected advice?

Thank you, my friends!  As you’re thinking of me, I’m thinking of you.

Hitting a low

I had spent the weekend in great and possibly misguided optimism.  The last two days in the hospital were relaxing, pleasant and painless.  I was fed, rested in bed, read, and walked around the gardens.  I was thinking of returning to work and traveling.  There was no indication anywhere for any negativity.

The exit interview, if that’s what it’s called, with one of the surgeons took my spirits down a notch already.  She shook her head in pity when I asked about working and gave me a two-week sick note.  Then she grounded me for six weeks.  No air travel until November.  On the subject of sutures, stitches and tape, she was more positive.  No need for questions.  You don’t need this anymore, she said, ripping everything off.  The stitches will dissolve in due time.

Before the doctor came, a nutritionist stopped by.  No banned food, nothing wrong with a glass of wine every now and then, but you need to get your weight back, she said and handed me a brochure about foods rich in energy and protein.  This looked fair enough, eat lots, eat rich, but I should have seen the warning lights.  What she was proposing was very far from my regular diet.

Today, I was suffering.  The first full day at home was hard.  Though my mom took care of me, I had to do more than at the hospital, and at night I played with the children when they came home.  I also went to work for three meetings, which probably wasn’t the smartest move.  But the worst was eating.

I spent all day eating.  Well, that’s what I should have done.  What I did was spent all day trying to eat, but after a big breakfast I couldn’t fit much more.  My colon is only half as long as it used to be, my gallbladder is gone, and I’ve just been brought back up to a normal diet over the past four days.  Now suddenly I’m expected to stuff myself with six meals a day, with cream and sugar and chocolate and snacks, snacks, snacks.

I was stuffed all day.  My stomach was full, my gut confused.  Where’s this coming from all of a sudden?  I need to gain a good 10 kg before starting chemo.  How do you gain 10 kg?  This sounds absurd.  I sat at the table looking askance at a half-full plate of pasta and cream sauce.  I lie in bed feeling sorry for myself.  Whatever I did, wherever I hid, my mom came with little bowls of more, chocolate-covered nuts, biscuits, dried fruits.  I should be healing and recovering.  Instead, I spent all day digesting hard at the limit of my abilities.  I’m a wreck, stuffed, bulging, immobile, dispirited.

After one day only, I already feel like giving up.  What’s the point in all this?  Do I really need to stuff my face with crap to get healthy?  This just doesn’t sound right.  And what about my stomach?  It led a happy life, I think.  Then it was starved over nearly four days and carefully nursed back to the living.  Now it’s being assaulted as it never has.  This cannot be right.

I’ll give it another chance tomorrow.  The reading on the bathroom scale was so low this morning that even I got scared a little.  I need to put on weight.  But I need to do it in a way that’s compatible with who I am.  My body cannot change engrained habits from one moment to the next, or get used to nutritional chaos.  Tomorrow I’ll go for walks and try to get some motion in my system.  That should help with digestion and also with my mood.  The food will follow.