What Does Chemo Do To You?
Ok, this one might be a little too much information for you. But if there’s somebody out there that will be going through all this, you should read this. Or maybe you shouldn’t. People ask me on the bad days what chemotherapy is like, and although I consider myself articulate, I have a really difficult time explaining it. Its difficult to describe the forest from the trees, right? But I figure I’ll try to describe it a bit here. Careful reading this.
Chemotherapy side effects are worse than cancer, that’s for sure. With cancer, most of the time you’d hardly know it if some doctor didn’t tell you. I mean, I was pretty hard up by the time they found it in me, but sometimes cancer can go all the way to stage IV and you’d never know it.
Chemo, on the other hand, you can never forget that. Not for a second. There’s no ignoring chemotherapy. It invades every cell by the end of it. You spend months marinating in a stew of toxic wastes that are out to kill you. And I don’t think that’s overly-dramatic. You try it sometime and see if I’m not right.
Well, I’ll tell you what I can about chemo. I’ll go day-by-day.
I’ll start on Sunday, the day before chemo. Remember when you were a kid and you dreaded Sunday night because it meant that you had to go to school early the next morning? And maybe you hadn’t done your homework yet, and basically, your fun was just over? Or maybe its still like that for you, where you get to Sunday night and you start to dread the coming work week, and what hassles are going to happen this time, etc., etc. Well, its a little like that, but I think I can, without hesitation, claim that my Mondays are worse than yours.
The dread of chemotherapy now starts much earlier than Sunday. At first it did start on Sunday, but then I realized how bad it was, so I moved the freaking out back a few days to Friday. Then Wednesday. I knew it was bad when the dreading would start on Friday, 9 days before my chemo treatment – before I’d even recovered from the last one. But now I dread it all the time. I get no rest from the dread of chemo now, because I know it gets worse every time and, save a few surprises, I know just what’s going to happen to me.
And I suppose I should feel good that I only have 2 more treatments. That’s what people keep saying, at least, “Hey – only 2 more, right? That’s gotta feel good.” It doesn’t. And people hate that answer. If I’ve learned anything from the progressive side-effects of chemotherapy treatments, its that the last treatments will be the worst. I don’t look forward to them, and knowing that they are coming doesn’t make me feel any better, even if completing them means its all over.
I try to distract myself on Sundays, and thankfully, I think everyone around me tries to do the same. The only thing you can do is try not to think about it. The doctor gave me anti-anxiety pills to calm down, but I don’t like taking them. So I just try not to let my mind rest on it.
I sleep as late as I can on Mondays. I don’t want to get up any earlier than I have to, because I know if I have time to think, I will. I take a shower and put together a bag of stuff. I usually bring my computer, my iPod, my headphones, maybe a book. I usually never use any of the stuff because the Benedryl knocks me out, but I bring it anyway. It makes me feel better holding onto something.
Chemotherapy is about a 4 hour process. They take your blood and start your IV right away. They fill you with steroids, saline and Benedryl to get your body ready, and they wait for the chemo drugs to be brought up from the pharmacy in the bright green zip-lock bag they come in.
I have a mental reaction to the smell of the alcohol swabs and taste of saline now. They use a lot of alcohol swabs during the whole process. They wipe down your port with alcohol, they swab the ends of the IV before they insert the vial for your blood, or the syringes full of chemicals. I can’t smell or taste the chemo itself, so I guess my mind has just decided that the bad stuff must smell like alcohol and taste like saline. The reality, of course, is that the saline and alcohol are the only things that are good for me in the whole process, but that doesn’t stop me from wincing whenever I smell or taste them. I know what’s coming when they are around. Sometimes when I’m not at chemo I’ll remember the smell of the swabs or the taste of the saline and I’ll jerk my head to the side and try not to puke. I really freak out sometimes.
You don’t really start to feel anything until an hour after you’ve been given the drugs. First you go to the bathroom and pee red. Maybe that’s too personal to tell everybody, but I’m telling you anyway. It freaks me out every time. I always forget its going to happen. It’s from the Andreomyacin, which is a red chemical, and the first drug in the chemo. Some people pee red for days.
The heat starts about then. The heat comes from inside me, from my chest I guess, and radiates into my face. By Tuesday I’m flush red all over, and my face is puffy and hot. My skin starts to feel softer than usual, I don’t know why.
A heated, sharp indigestion starts about the same time that the hiccups start. My nurse thinks the two are related. I think its all the same thing. The hiccups last for two days. They are double hiccups, where your diaphragm pulses twice most times and really shakes your body.
The nausea sets in immediately, despite all the drugs they give me. It’s a sharp nausea, like someone is stabbing you in the stomach, and trying to pull your throat out by reaching in through your mouth.
But, despite the nausea, and despite the fact that eating just makes it worse, you are ravishingly hungry. You would eat rice cakes willingly, you are so hungry. You eat until the nausea takes you over in a big wave, and you lay down and cry and wait for it to pass, and then you eat again, until the wave of nausea comes again, etc., etc. Its awful.
But the effects of chemo aren’t just in your stomach, chest, or throat, they are all over. Your eyelids droop and the muscles in your thighs twitch, and your abdomen expands with all the food your body won’t digest (go get some ex-lax and fiber bro, its going to be a long week…).
By Wednesday my legs are usually dog meat, but the hiccups are gone. The heat is still around, but its second to the sheer exhaustion. I mean, absolute EXHAUSTION. Not like “I’ve had a long week and I haven’t slept much,” or “I just lifted weights” kind of exhausted. Its much more powerful than that.
Last time, I woke up with three fingers numb on Thursday. The doc says that’s nerve damage from the Vinblastin. I say that’s some really nasty stuff for pianist. He’ll cut out the Vinblastin if it happens again this time.
I don’t really know when it happens. Not right away. But sometime between Wednesday and Friday my mind starts to fall apart. It lasts for 4 or 5 days. I can’t remember people, or conversations, or I’ll stop sentences halfway because I can’t think of the word. It goes away, though. I think.
By Saturday and Sunday I’m recovering, and I’m usually ok by Monday. Then I have one good week to run around like a mostly normal person, but with more dread, until I get hit again. The exhaustion never totally leaves me, and I can’t stand very long, but its not as bad during what I facetiously refer to as my “good” week.
Thank you, I was wondering because I want to know what my mother is feeling but I will never know.
I hope you survive it.
Keep on fighting and never give up.
May God be with you.
Thanks Max – I feel great these days. Click on the “About” page to learn more about me. I’m happy and healthy and living in NYC these days. I’ve been out of chemo for 4 years now!
Thanks Kay, I’m glad I could help you.
Wow! Thank you for being such an inspirational person! It takes someone with a lot of drive and will power to relive all those aweful moments and publish them in the hope to help other people. Why did you do it?
Hi David! I really appreciate this blog and this write up about chemo. I am in the same boat that you were in all those years ago! I am getting my port Wednesday and will get my Chemo Thursday or Friday. I really appreciate your knowledge and you telling it like it is so we getting ready to go through it will know what to expect!! Bless you!! You are an inspiration!!!
you are going to beat this I just sense it
Thanks Eric – but I’m actually very healthy now! I just hit 5 years cancer-free a few months ago. Life is great.
David-
I’m a fellow Hodgkin’s survivor, from IL also! I’m so addicted to cancer blogs, and when I cam across yours, I couldn’t stop reading. It’s like a book I can’t put down. The way you describe everything brings back the exact feelings and emotions I had when I was going through treatment- which is scary as hell, but comforting knowing there are other people out there like me. I think that this blog is amazing, you have a lot of talent. Just wanted to say hi, and let you know you’ve touched my life with your story- and congrats, I know it’s super belated, on kicking cancer’s ass. Survivorship is an amazing thing- and really, hearing stories like yours make me realize that other people out there “get me”, or just get it- thanks for sharing,
Kate
Thanks Kate! That’s a wonderful compliment!
your blog is very well-written and very inspiring. i read all 14 pages in one sitting which made it easy for me to see you shift from being cocky about chemo and dreading it. this is a good glimpse of the psychology of a cancer patient/survivor.
p.s.
i really enjoyed the humor in your writing.
Hi JP – that’s a great compliment. Thank you for reading!
This was an amazing read- you were on point with everything. I experienced pretty much the same effects especially with nausea. You described it so right. Its a horrible thing to go through.
Hello David, Im inspired to read your blogs about hodgkin’s lymphoma, I am a fellow cancer survivor for more than 10 years to be exact around 14 years ago, got diagnosed of Hodgkin’s Lymphoma on May of 1997 and had recurrence on 2000, underwent chemotherapy and radiation treatment and since then fully recovered from the battle, Im now enjoying a quality of life and life has been favorable again for me, and I thank my family, relatives and friends and the medical team who took care of me and who has been very supportive and most of all their fervent prayers, it was a miracle, I thank God for the gift of life. Im sharing this to inspire everyone that cancer is not the end of the world, there’s still hope and life after the disease. Let me share this that life is too short without living a life of meaning so let’s continue to reach others, touch their lives and make a difference who knows, we just changed a persons life. Just always remember to stay strong and keep fighting…God Loves Us…
God Bless Everyone…Charmion from Cebu City, Philippines
Thanks for your comment Charms, it’s great to hear from a 10 year survivor – congratulations!
Thanks Tres, I’m sorry you had to go through something so similar. I don’t miss those side effects at all!
you’re always welcome and anytime David, we’re all here to share our battle in overcoming the disease and our painful experiences that makes us who we are now…being defiant in our fight…it gives us the opportunity to realize and put things in order to make life even better and more meaningful. Most of all the courage we gained all throughout the ordeal that made us stronger. Also, God Healed Us for a Purpose and so fellow patients and survivors let’s give a shout that indeed we are “OVERCOMERS”. Praise God. Amen.
I have stomach cancer, I start chemo tomorrow and I am terrified!!!! After I read ur blog im still scared but more aware of what to expect, thank you so much..
I have testicular cancer and I’m only 18 years old and am active duty in the marine corps. I start chemotherapy on Monday I had no idea what to expect till know. Thank you alot.
You described it very well. I was searching the web to print something out for my brother to read so he could understand better and I think I found it. I have an uncurable autoimmune disease that they are treating with chemo to give me “extended time”. This is my second round and I am living with my twnety year old brother who just doesn’t quite get it. Thanks for being such an inspiration. God Bless.
i just found out i have breast cancer on June 7, 2010. i will have my surgery soon to put my port in to start chemo. i have seen so many specialists and they have begun to sound like “blah blah blah” to me. i keep asking how is chemo going to make me feel and they keep giving me the side effects but for once after reading your blog i hear it from someone that actually went through it. I am terrified but at least now know what is waiting for me. God help me. Thank you for your courage.
Hi David, You are very brave and I will pray for you. Be Blessed
ive just been diagnosed with follicular limphoma and am due to start chemo in sept …after reading ur blog i now know a little of what to expect …the specialists dont understand your worries and fears properly although they explain the treatments and what happens they dont know the effects the sufferer has to go through so ur being really brave doing this whilst you are suffering yourself …you are an inspiration so thank you and god bless and hope you have a wonderful recovery xx
Hey David, Good to hear you are kicking it cancer free, must be five years going fifty now-2011. My close freind is doing chemo and we could not talk about what he is going thro’ cos he just tells me- ‘don’t go there’, or ‘today is one of the better days’, but now i can actually visualize and empathize, and will hopefully be a more responsive friend. God bless.
This was a great idea. I’m glad you shared this with everyone. I’m sure you’ve helped more people than you’ll ever know by sharing this.
Glad to hear it worked and you’re healthy!
Hi David -
My dad was diagnosed 2 days ago with Stage 4 lung cancer that has spread and they began cheomo therapy today, so I was looking for information on what to expect. Thank you for the detailed information – its beautifully written. I am glad you have shared your experience.
Nice to hear chemo worked and you are well again. God bless.
I was googling what to say to my brother the night before he starts his first chemo treatment, I am so scared and feel so bad for him. I an touched by your courage and your happiness and to know that there is happiness in my brother’s future after this whole terrible thing is over with. I thank you for being able to read this experience; although, it is almost an “ignorance is bliss” type of situation. I want to know, but I don’t. Congrats and god bless to all that have beaten cancer and remain positive and love life today. It gives me hope and makes me a little less sad for my brother and my family. Thank you.
Hi David
My mother has been diagnosed with breast cancer and I am dead scared especially after I just read your blog–which I found out about after typing in: what is chemo like? especially the part about nausea and getting stabbed and eating and exhaustion. Don’t laugh but I actually punched myself in the stomach a couple of times to try to get a sense of how that feels. I am so scared for her. Is it not better for her to be dead than go through this? I’m her only kid and she is a single mother. Dad passed away recently.
I am prone to panic attacks myself and at worst time a few years ago, I went through a period of two weeks when I had dozens of panic attacks a day and kept feeling nauseous sitting by the toilet and kept crying. Reading the blog just made me have a major panic attack. That whole sense of helplessness and wishing for anything but this, for death, came back to me in a rush.
My mother is a sensitive person, has talked with doctors who assure her the process will not be as horrible as some make it to be and the anti-nausea meds do work and so forth. Yes, that she will get exhausted, somewhat nauseous, etc, but that it is not the worst thing in the world. But reading your description has me dead scared and I’m supposed to be her rock. Big laugh, right? Sensitive guy in his 20s with panic attacks, being her rock!
Is there anything you can tell me about the process being worth it, about life being worth it, about being able to get through it, as one human being to another?
I really really really appreciate it.
God, world is a scary place.
Hi, my mom was recently diagnosed with stage IV cancer and she has finish 10 sessions of radiation but she doesn’t want to do chemo. At first she said she wasn’t afraid and now she says she is in so much pain she doesn’t want to continue like that. I don’t know what to do I am devastated. By the way she is only 42 years old.
I was just diagnosed with Hodgkins and am glad I found your blog. While I am not looking forward to the road ahead, I now have an idea of a few of the obstacles and feel I can better prepare mentally for my journey. Fingers crossed, I will be in a similar place as you in five years. Thank you!
Thank you for telling us this. My Mom just started chemo today. They say she had to be on it for a year or so. She is playing it light with me, but I felt I needed to know. God bless you, and good luck to you.
It was nice to hear and sad to hear what u or anyone has to go thru my mother just found out she has stage 2 lymphoma cancer and got a go thru chemotherapy . I or we don’t know what to expect and were terriified. She always getting news bout her health and she is healthy person but now the bad news has arrived I reall y hope she beats this and i really hope her body can handle it. Thank u for explaining to us about treatments. God bless
Hi David,
I am and 15 year old girl going through Chemotherapy now for Hodgkin’s Lymphoma and I cannot tell you how much this blog relates to me right now. The day before Chemo, I hardly want to do anything. All day long I try to forget that tomorrow is the day the side effects will come back. Your completely right, the sheer smell of saline around the house makes me run for the bathroom to vomit.
I only have one more treatment left, and people keep asking me how excited I am, and I feel terrible to say that I’m actually not excited at all and I am just dreading that last treatment because I can’t go through the side effects again.
The hardest part for me during this whole experience are my “friends” who pass off what I am going through. I know that someone who has never experienced cancer will never truly know how it makes you feel but I can’t help but hate these people who don’t understand. However, this blog explains it perfectly and I can’t thank you enough for putting my feelings into words for me.
Shana
Hi guys Im glad I ran into this blog. Like you all I’m in a similar situation as well. Although I had never fully grasped the extent and pain that cancer brings on into the lives of people such as yourselves, I am finally living through it myself. I knew it instinctively the first time I noticed my swollen inguinal lymph node a year ago after a new years eve bout of partying alcohol consumption brought about the first of what would be a year of many agonizing bone aches, headaches and back pains. Throughout that painful year I was struggling, not only to bear the unbearable pain that increased as time went on and my swollen lymphnodes increased in number with my steadily spreading cancer, but I was also grappling with surviving through life making my rounds from one relatives house to the other working two jobs under the table as a waiter and an underpaid sales man, I had no American identity; I had nothing that showed who I was and I barely had money to get by let alone seek treatment, I was a burden to my family, both the ones here in the US and my actual mom and dad: I am their an only child of two great parents that recently fell on hard times losing both their jobs, my father barely surviving a heartattack that arose as a complication of cholesteol buildup through a miraculous experimental stent procedure he underwent some six months ago. So I waited till about last september
until the pain became over the top and I started getting blackouts due to the inflamed lymphnodes all over my neck and on the back of my head and as the golf sized first Lymphnode that ever appeared
made it impossible for me to stand or walk for long periods of time. I got checked out and the first doc diagnosed me with adenopathy and recommend me to another doc who actually knew what he was doing and immediately ordered a lymphnode biopsy realizing what was going on. At this time I was still in denial, hoping that my illness was a result of some viral or bactirial infection and that the swelling were some sort of auto immune response by my lyPhatic system. Anyways to kinda speed things up a bit iI was diagnosed with stage 4 Hodgkins lymphoma, I finally let my adoptive parents know, they were devastated(the hardest part for me was the telling the parents and friends part), it hurt me more than the two bone marrow biopsies I went through as my doctor couldn’t retrieve any marrow from my dried up cancer infested marrow tissue and telling my actual biological mom was the worst thing ive ever been through. She loves me to death, I’m the only son she has and I was conceived after she had lost so many babies during her pregnancy. I was a child promised to god when my mom knelt at some obscure church on a hill top and prayed and promised to feed his poor once a year on that day if he blessed her with a baby( I kid you not, me n her n dad used to go up there and to various other churches on that day every year to feed the poor and needy with the food my mother made. I can’t tell you or explain to you anguished my mother was but it was so painful and my chemo side effects were relatively so insignificant,the whole thing has been a painful rollercoaster. Even-though im in the middle of this emotional and physical turmoil, i have found solace spiritually. I found myself again, I had strayed from religion, gave away the bible my mom had gifted me on the last days before I left home for the states as I was a science major deeply entrenched in the biology of creation rather than the advents of creationism. I found myself when I really began to see that despite all the pain that surrounds us, even through all the unfairness of life, the crazy desparity of living beings, the many numerous incongruences that bewilder even the best of is; there is more good In this world than evil and wrong. I still have cancer, but I don’t have the burden of pain, nor the want of care; neither do I lack money for my treatment nor courage to face the unknown fear ahead of me. I have nodoubt felt the healing touch of unconditional love from my mother first and foremost and my best friend who both ignorantly offered me their body parts hoping to save me;) I have received forgiveness from my adoptive parents who I was estranged from and who have without hesitation took me back into their protective hold bearing the full burden of my treatment and vowing to do so till I was cured even if they had to sell their house, even if it means using up their laborer savings that they put aside for their autistic daughter, I have been graced with the loving and dotting care of many beautiful nurses and doctors who have given me hope, held my hands, embraced me with love as if I was of their flesh and blood and guided me through the maze of befuddling info. Even more so I think that the one thing that’s really saving me is my faith. I am a tenor Christian orthodox. I kneel before the picture of Mary, Jesus and st. Micheal every night and I pray in simple words, I reach out to the god I had forsaken and I believe he hears me. I know he hears me because ever since I started my chemo treatment, which consists of ABVD every two week, I have yet to feel nausea, I have yet to feel exhaustion, my swollen lymph nodes have dissolved on the very next morning after my first treatment, the pain is all but gone( except some throat and mouth pains that i sustained with four days of prescription Magic mouth wash, I eat ok and I have yet to lose weight, my blood count has yet to decrease and im off my neulasta shots (which are WBC enhancing shots) which did used to cause some soreness relative to a crick workout, and my hair is still growing fully thick, unruly and as black as ever(I actually tug on it half the time, bad habit) anyways the point I’m trying to make is the same as everyone else’s, I thought it was hopeless, I nearly succumbed to defeat and drowned in my sorrow and alcohol and ciraretts and weed, I had no hope what so ever of getting treatment; I was a nobody in the states. I managed to pull through atleast enough to get treatment because of some unexpected events that seemed to have been faithfully destined, even willed to happen. In the short year since I first discovered my painful swollen ailments I got married to my beautiful brstfriend who I had known all my life, had temporarily separated when she moved to us at a young age and reconnected after I moved here as well. Upon my marriage to her I was able to get state and work permut Ida as well as a social security which inturn allowed me to get emoyment(legally and fairly this time) and even better I was able to get
insurance under my adoptive parents by some miracle even though I am 24 years old.
So what I’m trying to say is the best thing I ever did in my situation was to turn to family, friends and god. I believe that the tears of all the people that love me and the salvation and forgiveness I prayed for are the healing,soothing touches that have allowed me to withstand the sideeffects you guys describe In this blog. I have felt nothing and it’s a miracle, even my doctors dumbfounded, after all it is stage four I had everywhere, even on my head, behind my ear every part of my neck on my back near my groin, it all disappeared after my first chemo, I don’t know about the ones in my abdomen or the cancer in my marrow yet I still have one cycle before I get scanned, but I can feel the healing already, I know I’ll be alright. And when I’ve overcame this mountain on my path I shall stand tall at the very peak and look on to the next obstacle, I will survive.
My best friend is having the same symptoms. I am taking her to treatment #2. I dread the next week for her. I hate this sh#$!!! It makes no sense. My heart goes out to you, anyone that has cancer, or anyone that loves someone that is going through this. Lord bless us all with your healing strength! Send your Angels to guard & protect.
Thanx for this info, we have someone in our family who recently got diagnosed with cancer. Even though we try to stay positive things really look bad now. I saw her after the chemo and now I have a idea what she suffers trough. We are visiting her tomorrow at the clinic to say high but a lot of people says we are saying goodbye. I will keep on praying for her and wish you all the best for the future.
Dear David,
Thanks for writing down your feelings about the Chemotherapy treatment it was very helpful to both my wife and I.
Jan was diagnosed with breast cancer last October 2011, to say it came as a shock to us all, we have two daughters, was an understatement! My description of the whole process to date is like we have all been placed in a large jam jar and have been shook violently, only now are things beginning to slow down.
As her carer I have felt very helpless when she is made ill by both the Chemo and the side effects. It is very upsetting to see her so low and suffering the symptoms you so accurately described in your blog. I did not hold up very well in fact I was signed off with stress by my doctor. I was also given counselling from a local cancer charity “Jane Scarff House in Romsey, UK. They are brilliant and have helped both Jan and I deal with situation. I’m now back at work.
Jan now has a Hickman line fitted and the delivery of the Chemo is less stressful. I must say thank you to Winchester Hospital, the staff and Jan’s colleagues who are all absolutely fantastic!
Jan has just completed her third Chemo, she has had some awful side effects: Cellulitus, Gastritis and collapsed veins. Our Oncologist said Jan has had a bad introduction to Chemo. The third session was really bad and knocked the stuffing out of her. She was looking on the web and found your blog she said you had really captured the feelings she was experiencing. It also helped me to understand what she is going through.
Thanks keep up the great work.
Baz and Jan Reilly
Andover, Hampshire, UK.
Hi Baz – I’m so sorry to hear that you and Jan have to go through this mess, but I’m so glad if I’ve been able to help you in any way. Thanks for writing.