Don't Worry

Matthew 6:34 


Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.


I had treatment number four of the adriamycin and cytoxin on Friday.  People tell me it doesn't get any worse than this.  In two weeks I start weekly taxol, and that is supposed to be a lot easier.  I'm pretty fatigued right now, but based on prior experience, I expect to be at my lowest over the next three days.  While I live in anticipation of that delight, I just continue to try to live as fully as I can.


For the prior treatments, we've had the nanny look after Midori overnight after my infusion.  It's been so helpful, because the infusion process is draining, the drugs they give me to prevent a reaction make me drowsy, and it gives me a day to leach the toxins out as a precaution before being in contact with her again.  This week, Friday also coincided with the nanny's annual July 4th weekend family camping trip.  Rather than disrupt their tradition or try to keep Midori after my chemo, we agreed to send Midori along.  It makes me sad that we're not together on the holiday and that my baby is on her first camping trip without me, but my life has in many ways become an exercise in choosing from among the least ideal options.  I can't wait to see her tomorrow!


On the bright side, Kevin and I got to spend some time together, and I was able to conserve my energy more than had Midori been with us. Perhaps it will help me as I head into the downward slide the next few days.  It was actually a pretty full weekend.  Friday night we went to a movie which might not be something I'd be up for post chemo, but we went to a different kind of theater where you sit in a recliner with a blanket and a pillow, and a waiter comes to you to serve you.  I basically just laid there in the same fashion I would have at home, but since there was a big screen and a waiter involved, I think it qualifies as date night.  Saturday, we got to visit briefly with some friends we haven't seen in a long time on our way to a day long wedding celebration.  The wedding was beautiful.  The couple is made for each other, and I think the message was an uplifting reminder to all married couples.  Sunday, we went to church and sale shopping with family.  Today we went to Kevin's mom's for family dinner to celebrate the fourth.  I was surely limited at each gathering this weekend.  I had to sit more than be active.  I had to cut things short, but I tried as best I could to be present and part of life.


My hope is that by participating in life's gatherings yet conserving my energy, I struck the right balance to be quite productive at work this week even as I slide into the valley.  I have so much on my plate.  In the business world, hope is not a strategy, but if you ask the famous tax collector, he'll tell you to let tomorrow worry about tomorrow.  So that's what I'm going to do.  I'm going to go sleep in peace and let tomorrow worry about itself.  I hope.  

This Might Be the Week I Develop an Eating Disorder

I had treatment number three last Friday.  It was slightly unusual in that they had problems with my port.  The first nurse who tried to insert the I.V. tried and failed twice and apparently saw enough blood to inspire her to give up up and call in reinforcements.  I guess some nurses are just better at it than others.  Thank God I always opt for the lidocaine before they start working the big needle.  (I can't believe I just said always like this is the new norm already.)  Once they got the needle in, they couldn't draw blood from the port.  It's essential that they be able to put things in the port as well as get a blood return from the port.  Something about the circulation and adriamycin not sitting around destroying all of my tissues and what not.  They concluded the port was clogged.  The solution was to inject my port with some enzyme that they compared to Draino (which would not actually surprise me at this point).  Then I sat and marinated for an hour and waited for the clog to dissolve.  I guess the point is don't be in any hurry when you're scheduled for an infusion.  The rest went as expected.

Sometime recently, I saw my physical therapist.  I'm making some good progress with my range of motion in my left arm.  The thing I love best about my PT is that she does not ask me about my mood.  I don't know how many doctors have asked me to rate my mood on a scale from one to ten or indicate my level of distress on a questionnaire according to smiley face, flat face, frowny face, etc.  I recognize there is a reason to ask, but I just find it so exasperating.  I want to ask, "am I in the right place?".  "You do know I have cancer right?"  It makes me want to scream, scratch out the faces, draw a picture of my middle finger, tear the paper to shreds, burn it, and stomp up and down on the ashes until I collapse into a pile of hysterical laughter.  Instead, I reply, "my mood is stable".

I was at church Sunday when a woman asked me if I'm pregnant.  If that doesn't take the cake.  Can't a girl have a little post chemo bloating without her family planning coming into question?  At least we know I'm heeding my oncologist's orders to keep my weight up during treatment.  I continue to eat despite the fact I have no appetite.  I'm also taking twice the recommended daily allowance of both Prilosec and laxatives per my oncologist.  (Sounds like the right foundation for that eating disorder I mentioned.)  In case anyone is wondering, I am under strict orders to not get pregnant.  The radiation oncologist (different from the medical oncologist previously referred to as "oncologist") told me that it makes everyone look bad if I have a baby with two heads.  Then there is the fact that chemo has sent me into menopause.  Assuming I were to come out of menopause after treatment, which is a big maybe, I have to take Tamoxifen for five years after my treatment which is also not compatible with pregnancy.  By then I should be around 46.  So for the record, there should be no reason to EVER ask me if I am pregnant.  For that matter, there should be no reason to ask any woman if she is pregnant unless there is incontrovertible evidence such as the baby is crowning.  On the bright side my mother-in-law put a hex on the woman involving the fleas of a thousand camels, nether regions, and short arms.  That made me feel considerably better, elevating my mood to a double smiley face.  

Chemo Brain, What's in a Name, and Other Random Thoughts

I was warned about "chemo brain", but so far it's not what I had expected. I was thinking perhaps I would misplace my keys or not be able to recall someone's name.  Since these are things I do already, my plan was to live happily in denial and simply not notice any cognitive impairment.  My keys are in my purse, my name is Paula, and I find myself forgetting things I would not have thought possible to forget.  For example, last night I had to check three different cupboards to find my drinking glasses (which have been in the same place since we bought this house last October).  One of my friends suggested the next time this happens, I forget the glass and go straight for the bottle.  I think this is sound advice.

I was thinking about the names Adriamycin and Cytoxan.  Adriamycin, Adria for short, sounds like a pretty name for an interesting woman you might meet somewhere like hot yoga.  It doesn't sound like something that causes you to cry red tears or that may cause heart failure and/or leukemia.  Cytoxan sounds like something out of a season of 24. Former CTU agent, Jack Bauer, is closing in on a terrorist plot to release a lethal dose of the biologic agent Cytoxan in the NY subway system.  I wonder how it is they come up with these drug names.

I went to see my Psycho-oncologist yesterday.  He's probably an Onco-psychiatrist actually, but I think the other has a nicer ring.  Basically, he's a guy with multiple advanced degrees who is supposed to help me manage my fatigue.  He has instructed me to do moderate exercise each day and apart from that to employ energy conserving strategies such as organizing the things I need on one floor of my home or sitting to do things if possible.  He recommends doing the same exercise for the same amount of time at the same time each day (even if it requires scraping myself off the floor to do so). Because he has multiple advanced degrees, he says things such as "stimulating a biochemical pathway to create a vector."  Yesterday he told me that there is a subset of patients who after treatment continue to experience fatigue permenantly.  He said it's because they continue to "push themselves beyond their biologic capacity".  He said because of the downward spiral of fatigue they get in, they may push themselves beyond their biologic capacity simply by resuming their daily activities.  INSERT SCREECHING TIRE SOUND HERE.  What??!  Resuming their daily activities?  Oh my gosh, I forgot to set aside some of my daily activities.  I immediately thought, so far no one has given me permission to set aside any of my daily activities.  I also immediately realized that no one is going to.  I need to give myself that permission and figure out how to better orchestrate the setting aside where possible.  The goal is that I will recover from treatment more quickly.  My hope is that I will spend less time on the floor during treatment. 

Round Two

My hair started falling out in droves June 1, twelve days after my first treatment.  Kevin shaved my head June 2.  It's better to just shave it.  There's just something very disturbing about watching it fall out.  We did it with Midori there in the hopes that she would see the transition and be more understanding of the change.  She asked me for a couple of days, "is mama a boy now?".  "Is mama pretending to be a boy now?".  Other than some gender assignment questions she seems unphased.  I've received a lot of compliments on both my bald head and my wig.  I feel like I'm gradually turning into a plastic person.  Fake breast.  Fake hair.  My lashes are getting patchy.  Perhaps, I'll go for false lashes as a tribute to my silicon self. 

The Tuesday after my second treatment, I spent the morning on the bathroom floor in the fetal position.  I called the oncologist's service (from the floor).  When he called me back, I explained that my stomach was cramping/burning.  It literally felt like a five alarm fire in my stomach.  He told me to take some Prilosec which helped tremendously.  I spent most of the day laying in bed or partially propped up in bed.  Other than Tuesday, I've spent a good portion of each day up and about. 

I spent most of last night awake.  One of the anti-nausea meds that I take at bedtime for several days following the infusion is also a sleeping pill.  It wasn't in the regimen for last night.  I wonder if I'm developing a dependency.  I could call the oncologist, and I'm sure he would tell me about some more pills I can take to combat the side effects of the pills that combat the side effects.  I have become a walking pharmacy.  The worst of round two seems to be over although the very thought of another treatment makes me queasy.

In other news, I've lost my taste for chocolate and coffee.  Talk about adding insult to injury.  I find myself craving raw fruits and vegetables.  I have never craved a carrot stick in my life.  Let's revisit.  Fake hair, fake breast, fake lashes, subsisting on carrots.  Sounds more like a model than a cancer patient.  Ha!

Muslin

I think if anyone who is 40 were to sit down and think objectively about it, they would recognize that life on earth has a beginning, a middle, and an end.  Being realistic, they would agree that their life is likely closer to the middle or the end than the beginning.  Having stage 3 cancer certainly brings this fact into focus.  I was always aware that life can end at any hour, but being handed the garment of mortality and asked to try it on, I can see that it looks much different up close.  On the rack, it barely captures your notice.  It's more like a dress maker's cheap muslin that they use to fashion a pattern out of before they cut the expensive fabric.  When you try it on, it's something else.  It's costly and delicate and too rare and exquisite to replace.  Well, I've tried it on, and I've decided to leave it for another day.  I like my muslin.  It's quick, and it's light.  It doesn't hide my flaws, and it doesn't matter if I step on the hem while I'm dancing with Midori.  It's a good week.  I'm feeling well.  I'm hoping the off treatment weeks will continue to be kind to me.

The Spirit is Willing, but the Flesh is Weak

I had my first round of chemo on Friday which involves being infused with a bunch of stuff over several  hours.  There are a bunch of drugs they give you so you can tolerate the chemo.  The actual chemo drugs for the first four rounds are Adriamycin and Cytoxan which my oncologist describes as the "boot camp of chemo".  The Adriamycin is the more intimidating of the two.  Rather than let it drip like all of the other stuff, they bring it in a giant syringe and sit with you while they push it to make sure you don't have a heart attack.  It's red, and it makes your urine/sweat/tears red. The nurse didn't find a MUGA (?) heart scan in my  records so she was reluctant to give it to me.  We had to wait until she got hold of my doctor and received his confidence that my heart could handle it.  The anti-nausea drugs they give you post chemo work well so I only felt a general queasiness and was able to keep eating each day (though I have no appetite).  The biggest side effect so far is that everything, including breathing, is simply exhausting.

I went back to work yesterday.  It was not easy.  I tried to  go today.  I got up and laid around the shower floor long enough to wash myself.  I tried for 2 hours total to get ready between several rest breaks until I gave up.  I slept until 5pm.  I had a bunch of weird nightmares.  I'm feeling quite a bit better at the moment (able to sit upright in bed and type) so I expect tomorrow to go better.  Kevin is at rehearsal for  the Faure Requiem. His  school is doing it with orchestra and combined choruses the evening after round two of chemo.  It's been in the plan since before the cancer.  He said, it's too bad, because I've done it before and had mentioned I wanted to sing it.  It seems funny the things people think about who are able to do the things that people do.  It's funny how quickly you become someone who doesn't know what you'll be able to do tomorrow.

Crazy is the New Normal

Monday morning about 2am Kevin gets me out of bed with severe chest pain, can hardly breathe, move, talk.  I call 911.  The parmamedics come and take Kevin to Overlake ER with me following behind.  Thank God Shelley is there to stay with Midori while we take off in wee hours.  It turns out Kevin has gall stones.  They admit him and get him on the surgery schedule for Monday afternoon.  They expect him to go home that evening or more likely Tuesday morning.  Once he's got his pain under control and is in a room, I decide to drive home (before I fall asleep) and pack a bag.  The surgery went fine.  The doctor said his gall bladder was massively inflamed so they want to keep him overnight on antibiotics and monitor his liver function.

Later blood tests reveal his bilirubin is high which indicates an issue with his liver most likely, because a stone was left behind and is interfering with the entrance to the liver.  He will need another procedure to go in and see what the problem is and hopefully remove the obstruction which is hopefully a gall stone.  The earliest they can get him on the schedule is 3:30 Wednesday.  They say he might be able to go home the same day.  Being familiar with the number of hours in a day, again I am skeptical that given the start time that will actually happen.  The procedure involves putting a scope down his esophagus.  They described it like a colonoscopy but in reverse.

On the heels of getting this news, we get a call from Kevin's brother that his mother is in an ambulance on her way to Overlake with chest pain.  I was able to take Kevin downstairs in a wheel chair to sit with her.  Long story short, after several hours of testing, they determine it's most likely not a heart attack.  There are a couple of things the doctor suspects it might be so they and release her with instructions to follow up with the cardiologist and gastroenterologist.

I leave Kevin (who is now yellow) to take Kevin's mom to her car.  In the time I'm away they realize the I.V. has been displaced and the fluid has just been collecting in his right arm.  The I.V. tech is on the way to move the I.V.  

Reasons I am starting to wonder if I am caught in an M. Night Shyamalan movie: 

Kevin is yellow.

Two nurses come to Kevin's room today and say they are going to every room in the hospital doing a skin study and would it be okay for them to "look at his bottom".  They look for like three seconds.  After they leave, I say I think the study is really to determine how many people will consent to showing their bottoms.

Kevin's mom rides the ambulance all the way from work to the hospital.  When they are nearing the entrance, some lady is honking.  It turns out her purse rode the bumper of the ambulance and survived all the way from work, on the freeway, to the hospital.

When I get back to the hospital, because of the fluid collection, it looks like Kevin's right bicep is twice the size of his left bicep.  (Remember that guy in Lady of the Lake that only works out one side of his body?)

I've been going around since Monday wee hours without my prosthetic.  Retail price is $330.  I need to be careful with it, because insurance will not cover a replacement.  Need to store it in a special case when I'm not wearing it.  Didn't have enough space in the wheeled suitcase for the storage case, and I don't have enough strength to tote around several bags.  I did leave it in the car just in case. (Just in case of what I'm not sure).  It's amazing what level of bizarre becomes normal in a short time.