Side effects

In this blog I have not talked about side effects much because I’ve not experienced much of them.  The first rounds of therapy were so easy.  I got my infusions in the hospital, got a bit tired in the process, went home with the bottle pump and fell asleep for a few hours until Flucha and the children got home.  After that, I was largely restored and feeling fine.  This lasted more than a year.

One of the antibodies made spots explode on my face and all over my back and another brought thick calluses to the heels of my feet.  There was the increased sensitivity to the cold caused by oxaliplatin and the neuropathy that developed in my fingers and toes with time.  There might have been more.  It’s all in this blog.  None of this was debilitating.

Things changed when I started taking pills just after Christmas.  The first, Stivarga, massively messed with my stomach and digestion.  I could hardly eat and I didn’t enjoy it one bit when I did.  I was dead tired on quite a few days.  My doctor asked me to reduce the dosage.  The therapy I started on Monday is even more brutal.  The first day was easy enough.  We went to Bern for administrative purposes and had a good day walking around town.  The bears were unfortunately still hibernating.  So were the cafés.

The next few days got progressively worse.  I was not just tired but utterly out of energy, felt pain radiating out to my entire body from the belly region, ate less and less, and had the hardest time finding any sort of comfort.  I walked haltingly because of the pain from my belly.  I couldn’t sit in front of my computer for any length of time doing something as simple as responding to emails.  I felt as if I were to fall off my chair at any moment.  On Thursday and Friday, I didn't even leave the house.  Sometimes even the bed wouldn’t do because my back hurt too much to lie comfortably.  I discovered the power of multiple pillows.  Even so, the nights were marred by frequent waking up, readjusting and hoping my exhaustion would be stronger than the pain.

On Thursday night, I puked dinner out in a number of powerful gushes.  This was like crossing into territory I didn’t want to inhabit for any length of time.  The next morning, after I had bravely or foolhardily taken the next dose of the drug, I called my doctor.  He recommended skipping that evening’s dose.  The drug has a curious schedule of administration.  Five days with pills in the morning and in the evening, then a break of two days, then another five days as at the beginning.  Sixteen days of rest brought the cycle of four weeks to a close.  The dose I was asked to skip marked the end of the first stretch of five days.

“See how you feel after the weekend”, the two-day recovery period, the doctor said.  “If things are back to normal, continue as before.  If you still feel bad, go from three pills to two.”  I’m not happy to reduce the dosage and with it the slim hope of beneficial effects but I don’t really see an alternative.  It is of course utterly unrealistic to recover in two days.  If it took only two days to recover from five days of the drug, there wouldn’t be a break of 16 days after the second period of five days.  I live in apprehension.

Enjoy life

It’s been two weeks since I last wrote.  I’ve already got emails full of concern for my well-being.  Thank you for these.  I’m doing fine.  Things are roughly as they were when I last wrote, after leaving the hospital two weeks ago.  I’m worse than last year but much better than in January.  I eat with sufficient appetite, and I have enough energy to get me through most of the day.

The reason I haven’t written is that not much has happened – and what has happened has kept me from writing.  Five days ago, my mom came over for a visit, just days after the German state she lives in was struck off the Swiss high-risk list.  As soon as she could visit us without having to quarantine for two weeks, she hopped on the train.  The children are crazy with happiness and I enjoy the evenings with her, but it means I have much less time to write.

Last Monday, I went to see my oncologist.  This would normally merit a post, but we didn’t talk about much.  I forgot to ask for what I was really interested in, a detailed discussion of the CT scan taken late in January.  What I asked for, the results of the sequencing of the live metastasis, hadn’t arrived.  Still, I didn’t go home empty-handed.  My doctor gave me a prescription for yet another chemotherapeutic drug.  He had decided Stivarga wasn’t worth the bother.

Trifluridine, the new drug, which is also known by its brand name of Lonsurf, is, depending on how you count, the fourth or fifth drug I’m on.  That I was taken off Stivarga kind of obviates the need to discuss the CT.  Things have gotten worse.  Still, it would be nice to know how bad it is.  Trifluridine is similar in its action to the 5-fluorouracil I took at the beginning, first with great hope, then also with fasting.  The drug didn’t stop the cancer.  What are the chances Lonsurf will be better?

It doesn’t matter.  Lonsurf is the last drug on the list the doctors had compiled for me at the beginning of my battle.  Beyond it lies darkness – unless the sequencing comes back with a glimmer of hope, a mutation that will serve as a target for an untried therapy.  Again, I don’t know how likely this is, but it’s the only thing that keeps me going.

I’m happy to repeat that I’m doing all right – though I’m clearly sick.  I don’t know whether I’ll be able to ride my bicycle to work when it gets warmer.  Maybe my breath will be too short for the gentle climb each morning.  I will surely not be pulling the children along the river in a trailer this spring - unless I buy an electric bicycle.  I cannot run either.  The impact is more than my belly region can take.  Even sledding down a bumpy slope was a little bit too much.  I get tired quickly.  My belly always feels odd.  But I’m alive, and I have enough power inside me to enjoy life.

Two sides

After eight days away, I slept in my own bed for the first time again last night.  I didn’t sleep too well.  I woke up a few times and struggled to find a position that was comfortable, but it was so much better than in the hospital.  No tubing connected to my chest, no nurses coming in at ungodly hours to connect an antibiotic infusion or take vitals before anyone is ready to get up.  I’m happy to be back home.

I left the hospital shortly before lunchtime yesterday.  Lunch had in fact already been served, but I sent it back because I preferred to eat at home.  I didn’t feel too great when I left.  I was weak, far from energetic and wondering how the journey home would turn out.  I hadn’t moved too much over the last eight days.

A bus brought me to the center of town where I filled two prescriptions that I’d need later that day.  One was for an oral antibiotic that would extend by another three days the therapy I had started in the hospital.  The pills are as large as candies but go down without problems, as I learned in the morning when I took the first one in the hospital.  The second drug acts against nausea.

I’ve never suffered from nausea during my fight against cancer.  The nurse who gave me the pills couldn’t quite explain why I needed to take them.  I took the pill a few times, out of trust in the medical profession but then started to discard them like a rebellious inmate of a mental institution.  On the second to last day of my stay, the doctor explained that the drug acts by stimulating gut activity.  This might give my stretched belly some relief.  Now I’m back to taking it again.

In the puffy jacket I had put on when I got the chills last Thursday and had worn to the hospital, I was now walking home, slowly but steadily.  With the temperature in double digits and the sun shining, the jacket was quite a few puffs too warm.  Walking didn’t seem the right thing to do, but I had to press on.  Every step I took was an effort.  And yet, I could feel my energy returning, bit by bit, with every step.  Being outside felt good, breathing fresh air, having the sun pull sweat from my skin.  I arrived home exhausted but revitalized, a different person than had left the hospital.

This is when I realized the main predicament of hospitals.  They’re great places to help patients get better.  The nurses and carers are more than just professionally alert to the patients.  Most work passionately.  The doctors do their best, never mind the hour.  I got the treatments I needed, quickly and expertly.  The nurses continued the care and made sure to meet all my needs.  “Is there anything else I can do for you?”, was the question I heard more often.  This is why most people leave the hospital in a better shape than they enter it in.

At the same time, staying in the hospital is bad for patients.  Germs, especially of the antibiotic-resistant kind, make infections a serious danger.  Patients lie in their beds, restricted to their rooms, for days.  The air is stale, the sun distant.  Patients don’t move much.  They slowly enter a resting state of lethargy and tiredness.  Muscles shrivel.  Stay in hospital beyond what’s medically necessary, and you’re bound to get worse.

I tried to keep myself alive while in hospital.  I walked up and down the long corridor down the building.  One lap added up to slightly more than 400 steps.  Making this add up to a respectable number takes more stamina than I had.  Even so, my sluggish shuffling, IV pole in hand, wouldn’t exactly have amounted to exercise.  The last two days, when the procedures were done and I had finished my book, I spent my time counting the hours and dreading the arrival of the next meal.  With soup, salad, main course and dessert, the food was quite good, but my stomach couldn’t take it, and it seemed as if my digestion had also entered a resting state.

Yesterday morning, when the doctor gave me the option of leaving or staying for another day to exclude anything bad related to the slightly elevated temperature I had had the night before, there was one obviously correct choice.  Today, I can already feel the difference.  I might not be much more active than before, but my body has woken up.  Eating is still a bit of a struggle, but much less so, and I don’t dread it anymore.  I don’t sleep during the day.  I climb stairs.  I go outside.  I’ve risen from the hospital.

Three more days

Three days is a lot, especially if you have to spend them in a hospital.  When the doctors told me yesterday that I wouldn’t be home until Friday,  I wasn't too happy at first.  I understood their point.  The antibiotics treatment has to run its seven-day course before I can leave.  But three days is a lot.  On the other hand, having a relatively certain release date is much better than living day to day, anxiously asking every morning, “May I leave today?”

It won’t be three days of complete inaction.  Yesterday morning, the doctors agreed to drain the liquid from my abdomen.  This is a procedure not unlike what was done to my lung, and I’m afraid the result will be the same.  The liquid will go but quickly return.  Even so, it should give me temporary relief and the chance to eat as much as I need to keep my weight.  And maybe the liquid will stay away.

Right after the procedure, I could feel that my belly was much less tense than before.  This is what I had hoped for, and it filled me with joy.  This procedure had been the right thing to do.  At dinnertime, much of my joy had already dissipated.  I had similar problems eating as before.  I didn’t want to eat and couldn’t fit much in.  The mere thought of eating now puts me in a bad mood.  I don’t feel good when I eat.  I’d prefer not to eat.

Not eating is obviously not an option.  I need to keep my weight.  If I waste away, the result is obvious.  This morning, a nutritionist stopped by to discuss ways of supplementing my meals to get enough calories even when I don’t eat much.  One option are energy-rich shakes that can be consumed between and after meals.  I’m already doing something similar at home with protein-rich milk drinks from the grocery store.  The nutritionist signed me up to something even richer, to be delivered to my door once a month.

This was only the second most exciting thing to happen today.  Yesterday when I discussed various aspects of my disease with my oncologist, we got to the topic of comprehensive mutational analysis.  I know the main mutation of my cancer, G13D in KRAS, but it’s entirely possible that additional mutations have accumulated during the billions of cell divisions that the cancer cells have undergone in their relentless proliferation.  To identify them, one takes a bit of cancerous tissue, extracts the DNA and sequences a large number of cancer-related genes.  The identified mutations might indicate new avenues for treatment.  As a side note:  Among those new avenues won’t be the injection of mitomycin C straight into the liver, which I had floated after Flucha’s discussion.  The oncologist didn’t think this was in any way sensible.

Getting the tissue for sequencing takes a biopsy.  In my case, the liver with its plentiful metastases was an obvious candidate.  The procedure took place this morning, after I had received, once again and much to my surprise, no breakfast.  A few hours later, I was wheeled down to the ultrasound department on the first floor.

I was a bit afraid the doctor would just take tissue from the liver, but he had things under control.  With the ultrasound, he mapped the area and identified a place with few blood vessels and good access to a metastasis.  Then everything was made sterile, including the ultrasound head and the cable, which were slipped into what looked like a condom fit for a horse.  Thus prepared, the procedure began.

An assistant held the ultrasound head to guide the doctor’s needle.  The doctor turned towards me, a syringe with a 8-cm-long needle in his hand.  For the local anesthetics, he said.  I almost jumped off the bed, but in the end it wasn’t half as bad.  He anesthetized the skin and then the protective layer surrounding the liver.  There was no pain beyond the initial injection.  The doctor took another needle, even longer and thicker, inserted it into my numb skin and further into the liver and, with a loud snap, extracted tissue exactly from where he had planned.  He repeated the procedure and then showed me two little worms 1 mm in diameter and 2 cm in length floating in a small plastic vial.  Enough for a few sequencing runs.

None of what I’ve undergone during this stay in the hospital has been painful.  But it wasn’t pleasant, and the unpleasantness adds up.  This afternoon, I lay on my bed in a rather sad shape.  I tried to write at the table for a while, but the bed was the more appealing proposition.  Good thing that there are no procedures scheduled for tomorrow, and that I can go home on Friday.

Slipping downward

My previous stays in the hospital were relatively pleasant.  I read, I wrote, I worked a little.  I could feel how I was getting better every day.  It was always a positive experience.  This time is different.  I’m lethargic.  I lounge on my bed with nothing to do.  It seems I felt better on Saturday than I feel today.  My overall state is poor.  Not even the nice two-bed room with private shower can make up for that.

This is weighing on me.  I’m not sure how long I can keep my optimism.  How long will I be in this fight with the conviction that I’m standing an honest chance?  Even the most stubborn stubbornness runs out eventually.  How long can I keep fighting when I’m letting myself slip as I’m doing right now at the hospital?  I don’t want to give up.  There’s no point in this.  But if everything that’s happening to me points into the same direction, it might be time to accept the inevitable.

I haven’t read any scientific papers on cancer in many months.  I haven’t explored or suggested to my doctor alternative, maybe experimental or unproven, therapies.  I’ve become passive like a sheep on the way to the slaughter.  This is also how I feel.  I need a boost of energy, something to push me back into gear.

Flucha has stepped into this void with some vigor.  She has always made little suggestions, but the liquid in the abdomen theory was what really pulled her in.  Today she was all but proven right.  I had an ultrasound that showed liquid around the intestines.  The doctor didn’t speculate, but I can see how this would restrict the amount of food my stomach can handle.

Encouraged by this success, Flucha started digging in the medical literature (or rather databases thereof) and found a paper that describes the application of mitomycin C straight into the liver.  This is not an accepted or approved therapy but, according to the paper, is something that has worked when nothing else seems to work.  As the liver seems to be my biggest problem now, this might be worth a shot.

What I’m much more concerned with is that I haven’t taken my regular chemo pills in four days.  I don’t want to let the cancer loose.  It does enough damage already when it is contained by drugs.  But there is still no word on my infection and on how long I will need to keep taking antibiotics, currently infused at eight-hour intervals.  The antibiotics preclude chemotherapy.  You can imagine that I really want to get out of this hospital.