Chemotherapy: The worst Ride You’ll Ever Take

Went to lunch today with my wife. A fruit cup in the middle of the table held a blueberry. For a moment, I wanted nothing more than to eat that blueberry. But doing so would have felt like shoving a hot poker down my throat.

I’ve been going through chemotherapy since October. Extreme cold sensitivity is one of many side effects that I’ve experienced in that time. I’m writing this not to whine or vent (okay, I’m writing it to whine and vent) but to document what I’m going through, mostly for myself. I do want to say that as horrible as this all feels, I trust and have confidence in my care team and their decisions.

I found out I had colon cancer back in July. It’s stage 3, meaning that it’s likely spread to some nearby lymph nodes (and maybe a nearby blood vessel), but one spot in my large intestine is the only place where there’s an actual tumor. My care team thinks a now-standard regimen of radiation (six weeks), chemotherapy and surgery will get me back to normal.

Radiation started back in August. The actual daily procedure went well, although I had a negative reaction to one of the drugs that accompanied the procedure and ended up spending a week in the hospital (more on that reaction later). Since October, I’ve been going through a standard chemotherapy regimen and I’ll take you through it day-by-day, because now, I’m used to how it goes.

Each round is three days (starting on Monday (except for holiday weekends, because they’re nice and give cancer New Year’s and Martin Luther King Day off)), then I get the next ten days off to recover and start all over again.

Funny thing is, before starting chemo, I figured this would be easy and I could just take it all at once.

I was wrong. Very wrong.

Monday

On Monday morning, I shower for the last time in a few days and go to the hospital. I get my blood checked and my port accessed. My port is a device surgically implanted under my right collarbone that they can hook an IV into. It left a scar and there’s an ugly bulge and it hurts if I stretch my arm too far one way or the other. Accessing the port basically means sticking a needle into it that will be there until Wednesday. Then I meet with my oncology team, go over the blood results and go downstairs for the actual chemotherapy.

The regimen is called FOLFOX, which is standard for colon cancer. They hook me up to an IV containing a medicine (hah!) called oxaliplatin for two hours. Once that’s done, I get the other medicine, 5FU (or as I refer to it, F-me). But I get the 5FU over the course of 46 hours, so I get it in a portable pump that I wear around on a fanny pack and go home.

As soon as I leave the hospital, I can feel the side effects. At first, my throat is sore and my mouth tastes horrible. I also have cramps in my calves and hands. And then there’s the cold sensitivity. Because I live in Ohio, temperatures have been freezing (or lower) since November. I can feel it in my fingers and face as soon as I step outside (and that’s wearing gloves/hat/scarf). The worst part of the cold sensitivity affects my eating/drinking. Anything cold hurts to eat or drink. And it makes the taste in my mouth worse. The intensity of the cold sensitivity decreases slightly every day, but it can linger on until the next week.

The rest of Monday is pretty normal, although I have a lot less energy than usual. But life isn’t comfortable with a pump strapped around your waist (not to mention it also rules out showering for a few days). Hopefully, Monday night I’ll be able to eat a good dinner because I’m going to need it.

(I should note that for the first chemo session, I had very bad hiccups that started Monday night and lasted through Wednesday, hiccups that would last up to eight hours. This was caused by a steroid they prescribed me to help with the symptoms. But it was making things worse instead of better, so I was advised to stop taking it after the first week.)

Tuesday

Tuesday starts off like Monday ended. But my stomach starts to feel a little queasy Tuesday morning, so if I’m lucky I can get in a good lunch and dinner. The queasiness builds up until the late afternoon, when I’m on the verge of vomiting. Additionally, the cramps from the previous day come back and I get very restless. I don’t want to stand or sit. Lying down is okay, but my body cannot stay still. I get very tired and it’s tough to concentrate. Also present from the day before: the bad taste in my mouth.

Despite how tired I am, it’s tough to sleep, especially when it’s time to go to sleep Tuesday night. It takes a while for me to fall asleep and then once I’m asleep it feels like I wake up every thirty minutes.

Wednesday

Starting very early Wednesday morning, the worst of the side effects start. The nausea is at a high. I can try and hold this back with a variety of antacids, but Pepto can only do so much. Not only am I vomiting, but I’m also doing other things at the same time that would impress Dani Rojas.

Along with the nausea and vomiting comes major chest pain. This is from the 5FU and is the same side effect I was hospitalized for in August. Back then, I had been taking 5FU in pill form and after a few days, started feeling this major chest pain (burning, rapid/pounding heart beat, feeling hot, sweating, pain radiating down my left arm) after a few minutes of moderate activity. In the ER, I was told it was like I was having a heart attack but without having a heart attack (because of the lack of some chemical or another in my blood). After many scans and tests, my heart was ruled to be okay and it was decided that the heart pain was a GERD-like reflex to the medication (it’s making my esophagus tight, and my heart is reacting in kind). I was switched to the infusion back then and the heart issue went away.

However, it came back with the chemo regimen. So as I’m having these nausea and vomiting spells, I’ll also get hot and sweaty and feel this debilitating chest pain. This can happen on its own, or if I do any activity more than taking 25 steps. I’ll lay down to get the pain to go away, which works sometimes. But when it doesn’t, I take a nitro pill (but I can’t take more than two a day) and just stop doing everything.

And have I mentioned that I haven’t really eaten anything since Tuesday?

Luckily, sometime on Wednesday, I’ll go to the hospital to get disconnected. These last few times, they’ve given me fluids through IV, which do help me feel a little better. But because the medicine is in my system, even after I get unhooked, I’m still feeling the nausea and chest pains. The cramping and cold sensitivity are there too. A few times I’ve made the mistake of taking a shower after getting home, but the ‘activity’ of standing still for a few minutes for the shower activates my chest thing, so I wait on that.

Thursday

Even without the medicine, the symptoms stick around. The nausea and chest pains happen until midday Thursday. Cold sensitivity is still a thing. And despite not eating for nearly two days, I have no appetite. Maybe I can manage to eat a few bites later on in the day, but I’m not sure it’s because I’ve been nauseous for a few days or because I haven’t eaten at all, but I don’t want to eat at all.

Friday

By Friday, I’m ready to eat. I can walk and do most of my normal activities. Cold sensitivity will still be a thing, but it’s not as bad as it has been. I’m ready to live a normal life again. Although in the back of my head, I’m dreading the Monday after next because it starts all over again.

But not this time, because I’ll be done with it.

(Unless they give me more chemo after my surgery.)

Despite how bad it is, it is going to (or supposed to) help kill this thing inside me. So I guess it’s worth it. But I really don’t want to do it again.

Tracking the Flood, Part xxxiv

1051Hawaii   – v5
1052Gravity   Will Bring You Down – v13
1053How   Many Places 003
1054Pacific   Sunset – v9 more solo guitars
1055I   Won’t Flake On You – v5
1056toby   gad idea 1
1057Anonymous   – v23
1058Untitled5
1059If   You Want Me Tell Me So 2
1060I   Can’t Find The Words 6 high of
1061dictadroid1_2014_6_28_19_54_42
106208   Miss Sweeney 2
1063Don’t   Show Us Your Body – v6
1064something   special 6 broken verse @102
1065Warm   For You
1066Does   Anybody Love Anybody – v8 bridge sped up
106701   Epic Intro
1068E   C# techo riff 2 chorus
1069The   British Are Coming – v10
1070Ever   Again – 2004-02-20
1071Lay   Down
1072When   You’re Alone – Don Slacks
1073Second   Best Hugger In The World – v9
1074Piano   Minor 8-28-2012 10H2M22S
1075Hey   Nonbeliever – v2

Tracking the flood, part xxxiii

1026The   Beach Boys 3 @85
1027You’re   Beautiful To me 7
1028Message   Board
1029Superfan 17
1030Anonymous   – v3
1031MAYBE   ALL THE WAY – ROUGH 1 – DEC 27
1032puzzle   rip
1033Ideas   10-16-2013 11h3m20s
1034Congratulations
1035I   See Colors 4 @97 -2
1036Ideas   10-3-2013 15h36m49s
1037Bone   On Bone – 2013-2-28 sketch 2
1038Any   Friend Of Diane’s 2 AJ @89
1039Whatever,   Dude
1040The   Waste Land – v3
1041You   Were Right here All Along 4
1042as   hot as it gets 4 @126
1043Do   You Want To Get High – v14 alt cho
1044Fake   Smiles – v4
1045affair
1046Ideas   3-28-2013 17h12m23s
104702   Getchoo
1048Take   Your Life – v1
1049Something’s   Missing – 2013-2-1 sketch 2
1050The   British Are Coming – v33

Tracking the flood, part xxxii

1001Untitled12_2014_2_20_13_9_31
1002Hendrix
1003Untitled2
1004Ideas   1-3-2013 14h46m27s
100502   Galactus
1006Work   6-17-2013 21h40m24s
1007The   Band We Loved The Most 3
1008Money   Makes Me Happy – SFTV
1009Guiding   Light 6 swear to god bridge @131 -1
1010Why   Won’t You Love Me – v5 same chord
101173   sing a melody
1012Intro. (also Always, Forever) – 2004 Unchained   Melody
1013Almost   Beautiful 2 Happy Now @125
1014@80._2015_3_4_10_8_48
1015work   3-13-2013 1h0m52s
1016Nadeshiko   – 2013-1-3 Brief Vocal Note
1017The   Best Of Me – v1
1018myBrain-oasis-intro-mp3
1019Work   7-16-2013 17h4m49s
1020You   Got To Mow
1021tense   desperate piano 2
1022Cleopatra   – v25
1023Teenage   Victory Song
102442   042a
1025Beatle   That We Loved The Most 21

Tracking the flood, part XXXI

97602   Track 02
977Fool’s   Gold
978Something’s   Missing – 2013-2-1 sketch 5
979Negativland   – Don Slacks
980You Lied To   Us
981Work   10-15-2013 10h33m59s
982You’re   Beautiful To me 14
98321   Suck My Hot Poker
984Higher   Power – 2003 Demos
985Untitled3   (1)
986suki   yaki cuomo Ideas 2-15-2013 10h2
987Sports   Team 3
988Second   Best Hugger in the World – 2013-2-13 sketch 1
989Unknown   Song F – 2012-12-13 sketch 2
99048   i’m gonna write_
991ring   around rock bridge 1
992Working   Man – v3
993Somebody   Tell Me Why – 2
994Binoculars 5
995summer_Elaine_and_drunk_Dori   1
99601   Where Is My Protector – Rough 2
997Simple   Fisherman (Bgv In Bridge) – 2004-02-13
998St.   George – 2012-10-23 acoustic sketch new chorus
999Work   10-27-2012 11h59m20s
100011   11 11 11 A11

Tracking the Flood, part xxx

951I ii piano
952Stop, Drop 019
953Untitled2 foolish father
95401 Autopilot 2
955Second Best Hugger in the World – 2013-2-14 sketch 2
956Untitled10 1
957I Can’t Find The Words 6 verse vo
958Sports Team 2
959128 Peas in the Basement
960dictadroid6_2017_9_12_9_46_48
961Slave
962ideas 11-27-2011 20h0m26s
963Apples And Oranges 1 AN @59
964Working Man – 2013-3-26-13 pro sketch
965Anonymous – v25
96602 Funky Hr-16 plus Bass Jam
967I’m A Robot – 2004-07-20
968Destination Take Me Home 060
969Almost Beautiful 3 Happy Now @125
970Rest In Peace – v21
971Work 2-12-2013 10h44m30s
972Tell Me What you Want
973why_won’t_you_love_me_4_@135
974Let’s Go To The 33rd Dimension – v3
975140 D D C G (A22 late night jam) (c

Tracking the flood, part xxix

926You Could   Take Me Anywhere 9
9274 1 2 2 ACE   OF SPADES drum stem (timpani) @ 94
928Binoculars –   2013-6-26-12 rough sketch
929366
930ecwcrk   9-20-2012 12h38m38s
931something   special 4 I thought I lay @102
932Work   10-28-2013 13h50m5s
933Ghost @125
934I Won’t   Flake On You – v6
935Show   Me Who You Are (8th Melo) – 2004-05-18
936wild_animals_5_verse   1
937No   Contact – 2004-05-18
938Womack   Church – v2 Instrumental
939Supergirl   – v2
940Happy   to See You Together
941I’m   Just Being Honest – 2012-12-14 early piano sketch 2
942Ideas   10-3-2013 15h20m3s
943You   Were A Man – SFTBH
944The   Flowers In Your Hair
945dictadroid2_2014_9_4_8_12_52
946Living   In Harmony 2b @118
947Medicine 7
948Shining   Stars 8
949The   Ivory Telephone – v4
950See   You, Feel You – v2

Tracking the flood, part xxviii

901Dead Man’s   Float – 2003 Demos
902Cleopatra –   v22
903ideas 10-18-2012 18h12m51s
904guiding   light – dictadroid1_2015_1_2
905I Want You   To Notice Me – v3 sketch
90609 You’re   lovely_ and a haunting cho
907Everyone   Knows 8
908Resurgum   Fidei – v2
909Movies 2 Tight Black Dress
910Elaine- v7   be my steady sketch
911Subjective 4
912clean riffs   with hecksher
913Stay
914Cleopatra –   v18
915Kick Ass   Minor C115
916QB   Blitz 3 drums @99
91710 My Day is   Coming
9181998 Riff 1   (Heavy Metal)
919Unknown Song   C – 2012-11-16-12
920Still   Dreaming 3 @66.6667 -6 to -3
921Et Tu Brute   – 2003 Demos
922out_the_door_2@168
923Sick Of All   The Effort
924The British   Are Coming – v47
925Expatriates   In Paris 10

Tracking the flood, part xxxvii

877June Bride 15
878355
879Susanne – Don Slacks
880Untitled4 2
881Nothing Like It 7 @128
882Drama Queen – 2003 Demos
883I Wish I Could Autotune My Face – 2013-1-19 sketch 3
8843 doors down minor shuffle
885You’re Prettier Than You Think You Are
886I Won’t Let You Down – v8 1
887Anonymous – v2
888The Rules Of Life – v46
889Fall Together – v2 alt riff
890Scotty’s Pullover (tennis ball)
891East Coast or West Coast – East VocUp
892Untitled2
893Inspired 10
894Break Me – 2004-05-18
895To Infect
896Untitled8
897heart_6_love_of_life
898QB Blitz 11 music box @102
899Anonymous – v19
900Why Am I Getting So Upset 10 ozma

Tracking the flood, part xxxvi

851Hide Into   The Sun – 2
852Ideas   7-14-2013 14h28m47s
853All Around   Me, Everywhere
85410 Scat
855Does Anybody   Love Anybody – v11 meet
856The British   Are Coming – v13
857Over The   Mountain – 2004-05-18
858@120_2015_3_2_11_48_12
859Unknown Song   C – 2012-11-5 3
860Heart of   Hearts 5 @128
861The Rules Of   Life – v26
86212 Pig 2
863Groovy Piano   Melody Ii V    I Vi
864212 I Wish   You Luck
865Make Some   Noise For That 3 –1 6 3 b6 5 piano    @64
86611 Woolly   Mammoth (heavy major riff)
867I Swear It’s   True – Don Slacks
868three
869Any Friend   of Diane’s 8 welcome verse @89
870VI iv   VII v    i aku pluck
871Ideas   12-16-2012 10h7m31s
872Summer Love   Examp
873Bone On Bone   – 2013-2-28 sketch 6
874Thief You’ve   Taken All That Was Me
87501 i must   have dranken a lot more th