“How is Trent doing with this round of chemo?” This is undoubtedly the question I answer most these days. I don’t have a problem with anyone asking me this question at all. It’s actually just the opposite. I really appreciate being asked and knowing that people are interested. Nope, the problem actually lies in my answer. How do you answer that question? Like, really?
Even though people ask how he’s doing, most don’t really want to know, even if they think they do, because if I did fill them in with the real deal it would make for a very very uncomfortable conversation, ending in tears. I often play with how to answer according to a few variables
A. who’s asking (some people are just nosy – I’ve decided I’m saving the grossest details for them),
B. if they really want to know (I can tell by the eyes), and
C. how much time we have (asking me during a 5 minute passing period at school probably won’t cut it, unless you want to be late to class or just get a shitty answer).
This whole situation bothers me, and I recently realized it’s because I don’t even know. Not really, and not the way I feel I should. But my husband and so many more out there who are enduring chemotherapy, or radiation, or surgery, or all of the above deserve a better answer than “He’s ok,” or “She’s hanging in there.” So, this is what I decided to do. I asked my husband and his chemotherapy counterparts “What makes chemo suck so bad?” for all of us who care, but just truly have no idea.
For starters, here’s a little chemotherapy info:
1. Chemotherapy drugs are cytotoxic, which means they are toxic to cells. Not just cancer cells, all cells. Especially the cells with high turnover. You know, the ones that are responsible for hair growth and keeping the tummy in order – hence the nausea and the hairloss. That’s how the whole thing works. You get chemo to kill cancer cells and keep them from dividing resulting in larger/more tumors, but therein lies the issue. Chemo kills cells, which make up your body, which in turn kills, well…your body.
2. There are 4 different classifications of chemo drugs, but numerous drugs classified as chemotherapy.
A. The main focus of curative chemo is to completely rid the body of all cancer, see CURE. This is the obvious goal for all cancer treatments. NED. No Evidence of Disease.
B. Adjuvant chemo is usually used as the catch all post-surgery. The focus with adjuvant therapy is to kill the sneaky f-ers that hide after surgery and to keep cancer from coming back.
C. Neoadjuvant chemo is used when a tumor is too big for surgery and need to be shrunk first in order for the surgery to remove the tumor to be less of a bitch. As simple as it sounds, you can’t just go in and remove some ribs here and a lung there and not feel it later. Oh, no. You would feel that big time, so with neoadjuvant therapy the doctors are working to make it hard on the patient with the chemo earlier to make it easier on the patient later.
D. Last, but not least, is the least acknowledged and probably hardest to understand chemotherapy, palliative. All cancer is bad (PSA – Never say, “Oh, that’s the good kind of cancer” to someone with cancer. Rude. Insensitive. You look like an ass. Just don’t. Ever.), but palliative is for those with the bad bad. The sole intent of this chemo is to slow down the tumor growth because there seems to be no way all of the tumors can be removed from the body. Best case scenario this therapy will stop the tumor growth for a time and reduce the side affects of having a whole bunch of cells multiplying uncontrollably in the body. You got it. This is the type of therapy Trent and so many other Stage IV fighters are enduring.
3. There are 3 ways that you can “get chemo” or have it administered:
A. By mouth, in the form of a pill that doesn’t require inpatient stays. Patients would take this chemo pill like you take any other daily medication. Trent was supposed to begin a pill called Votrient prior his last MDA visit. Most of the symptoms with the pill are the same as with iv or injected drugs, and I’ve heard through the chemo-grapevine that the symptoms just kind of settle in and never really get much better.
B. Chemotherapy can also be administered as a shot – I’m going to have to find out more information about the injection as it has never been offered to Trent. (If you know anything about chemotherapy injections please feel to add more information in the comments section.)
C. Lastly, and this is the real crowd pleaser, chemo infusions. Infusions are when the lovely chemo nurses set patients up with an IV to run the selected chemotherapy drug directly into the vein for anywhere from 4 hours as an outpatient (sit in a room full of like-minded individuals receiving the nectar of the underworld) or as an inpatient, where the patient becomes best friends with the hospital staff because they are spending upwards of 6 to 7 days in the hospital hooked to an IV pole, non-stop, often not even being disconnected to bathe. At one point, Trent was up to 7 days in. Tons of fun. Now, with his new chemo drugs, Adriamycin (“The Red Devil” – yes, that’s really what medical professionals call it) and Dacarbazine, Trent is in for a 72 hour straight hook-up and then he’s freed. The last day of his infusion he is a caged animal.
4. Most chemos have a lifetime limit. Meaning, if you’ve had a certain drug once and it doesn’t work the way the doctors expect it to you can never go back to it. Certain chemotherapy drugs work best on certain cancers and some cancers only have a few chemos that are effective. Synovial Sarcoma is allegedly one of those cancers. Yeah, of course it is.
5. Last, but most certainly not least, chemotherapy can kill you. And in a couple of ways. Yay. One, the side effects can become so severe that the patient can no longer walk the line. Two, chemo can cure your cancer, but it can also give you more cancer. Usually when and where you least expect it. Awesome.
Gavin and Trent sleeping Pre and Post Chemo June 2014 and April 2015Cole and TrentChemos generally have the same side affects, give or take a few differences depending on the drug itself. Here’s a nifty graphic to help you identify why and where cancerites feel and look the way they do.
Now, most of these are side effects that you are kind of familiar with (nausea, vomiting, lethargy, hairloss and are generally depicted in the media and generally horrible movies whose story-lines are based on someone who has cancer ie My Sister’s Keeper or, as much as I love me some Keanu, Sweet November. The Fault In Our Stars does a pretty decent job of capturing what it’s like to be a teenager with cancer, but in my observations I’ve found that it is difficult for someone who hasn’t endured a cancer diagnosis and subsequent treatments to adequately portray the life and mind of someone with cancer. Writing this blog, I ran into the same issue.
I think it’s really important that people understand that the side effects of chemotherapy don’t come simply because a fighter is laying around too much and needs to get out more. Or needs to eat more greens, or drink more water. Nope, that’s not it at all. Chemo sucks so bad because as much medication as the doctors prescribe to offset the side effects when they dig in there isn’t much that can be done to cut through it and the white-knuckling ensues. Here, bite down on this stick until it passes and all I can do is hold his hand and rub his back. Truthfully, the only thing that really helps is illegal (absolutely ridiculous, but I’ll save this subject for another post).
Often times it is a chore for Trent to simply lift his head from his pillow or open his eyes. Some days, getting up to go to the bathroom is overwhelming. But chemo is a tricky sucker, just like cancer, because within the same day as not wanting to move a muscle Trent might be feeling well enough to venture to the store, get together with friends or just throw the boys around for a little while. No, I can’t do the chemo-explanation justice, so I enlisted some of my new friends to help me offer some insight.
“Chemo sucks so bad because it lit.e.ra.lly feels like it’s going to kill you. Like you really might not wake back up if you fall asleep.” ~ Robin
“Chemo sucks so bad because it took my long hair, made my mouth taste like metal, and made my brain foggy for a long time. And, like Robyn, I thought I might die from the chemo instead of the cancer. Sometimes I wished I wouldn’t wake up just to have to do it all again. But, hey, I made it and it worked! Grateful for that!” ~ Belinda
Belinda also says, ” I guess there were some good things… didn’t have to shave my legs for a year…LOL…. made my skin look pretty. My BFF was jealous about that and I told her to go sign up for some chemo and hers would look nice too. And I lost a lot of weight, but [I] would not recommend [it].”
“Chemo sucks so bad because it is the ultimate kill joy. Want to go shopping? Too bad, chemo made you anemic and you can’t walk more than a few steps without getting dizzy. Want to go on a date? Too bad, chemo has your white cell count so low that kissing could give you something that might make you go to the hospital. Want to floss? Think again, your platelets are so low that those bleeding gums may bleed out overnight. Want to enjoy your favorite meal? Not happening with all those sores in your mouth. And the ever present nausea and diarrhea don’t exactly put you in a mood to chow down. Want to simply meet a friend for coffee? Fat chance! Your eyesight is fuzzy from all the prednisone, none of your shirts come close to covering your accessed port, and the missing eyelashes, eyebrows, and hair elicit a lot of pity stares (but that last one honestly never stopped me from doing anything)” ~ Rebecca
“The worst chemo for me was Adriamycin and Cytoxan. I didn’t feel alive anymore. I felt it took the soul from my body, which was still somehow moving around. I also sometimes didn’t want to wake up just so I wouldn’t have to get another dose.” ~ Adrienne
“Chemo sucks so bad because it sucked the life right out of me. My skin,hair & nails. My non existent energy level stays on low & don’t even get me started on my crazy ass mood swings! F*ck you chemo.” ~ Kelley
“Chemo sucks so bad because it chips away at your personality. You don’t have the energy to be the best version of yourself. You want to walk around but you feel blah and sleeping through the hours feels better. You zone out and forget important things that people tell you or invite you to. It sucks because it limits your ability to be a present part of life. You feel like you are watching everyone else live a life.” ~ Elizabeth
“Chemo sucks even after it’s finished because you can have PTSD from it/the whole cancer experience. Little things can trigger a full-blown panic attack. For me, it was a little green light on my ceiling’s smoke detector. It reminded me of the IV pump’s screen glowing on the hospital wall when I received 24-hour long chemo infusions. Counseling has helped a lot now that i’m 6 months post-treatment. So has writing and art therapy.” ~ Elise
“Chemo sucks so bad because you see the toll it takes on the ones who love you the most. I work for my father so I see him daily, and his constant concern and worry and the effect that can have on his health breaks my heart. All a parent wants to do is take your pain for you. But with this, they are helpless. It hurts me worse than any of my treatment issues. And yet, his presence in my life is my greatest blessing. Such a double edged sword.” ~ Sue
“Chemo sucks so bad cause is takes away life. You are left with a vague image of what you used to be. Watching the world continue to happens but yet your stuck being sick and nauseated. Chemo did teach me to appreciate the gift of life and never take for granted the simple pleasures we are given everyday. I wouldn’t trade in my experience for anything.” ~ Lara
“Chemo sucks so bad because it makes your world stop and move in slow motion while everyone buzzes around you because they have to live their lives. It makes people try to guess what you’re going through when the experiences are so intense describing them, let alone trying to express them to someone is literally impossible and exhausting. It makes my wife worry about every single slightest thing happening to me. She is always listening and watching. My body can’t make a noise without her considering and analyzing whether or not it’s something to report or go in for.
It makes me feel so distant from my teenagers. Even more than usual I don’t get them. I miss them. I don’t get to watch them play volleyball…ever. I’m not sure I could make it through a tournament without being exposed to something or regretting it because I’m so tired I could die.
I can’t work…so, I don’t make money. I can’t even buy flowers for my wife.
I can’t stay home by myself or with the boys without someone worrying about us.
I never go anywhere alone anymore because “they” worry about me.
Chemo sucks because I can’t drink a beer. Oh, how I love beer. It’s not the alcohol. It’s not even the amazing flavors that totally excite my pallet and challenge it. Ya, that stuff is a big part of it but I’m talking about having a beer because…I CAN. Because I deserve it. Because I worked my ass off all day and fed hundreds of happy people in the heat, away from my family. Or maybe, drink a glass of wine while I’m cooking.
I don’t hardly cook anymore. I miss using my knife.
How about TMI…chemo sucks so bad because I can’t kiss my wife for fear of my saliva being toxic to her skin.
Chemo may save my life though. Chemo might make this all worth it. Cancer sucks. It doesn’t make sense. I still can’t believe I have it.
I thank God for my life and every breath I have. My family and friends are amazing. Thank you to my friends for putting their lives aside to support me.
Without Adrienne life would be a lot different. Thank God for my wife.” ~ Trent
I only experience cancer and chemotherapy as a caregiver. While I don’t want to cheapen or disregard the deep and intense feelings I have as a result of the change that has happened in our lives because of Trent’s sarcoma diagnosis, I do want you to try to wrap your mind around what it is that the people who have been diagnosed with cancer, who are fighting cancer, and who have passed on as a result of cancer live every single day. They are brave beyond measure. My husband and countless others have my eternal respect, and I’ll tell you a little secret.
The secret is that as much as I know my husband is putting himself through hell because he wants to live, I also know that he is making the ultimate sacrifice. He is not doing this for himself, not really. He’s poisoning himself every three weeks so that he can be a friend to our friends’. So that his wife won’t be alone. So that his daughters’ might have the blessed memory of him walking them down the aisle at their weddings. So that his sons’ won’t have a hole the shape of their dad in their hearts. So that his brother and sisters’ don’t have to tell their babies what Uncle Trent was like. In the hopes that our parents’ won’t have the heart-wrenching experience of losing a child. So that he can hold on for a cure, so that he can hold on for us.
And I know in my heart that he is not alone, and his story is not a singular one. Chemo sucks so bad because it’s the only choice that we have to survive this wretched disease and it is taking so much from him, but could give him everything. Simultaneously.
If you’re in the fight, please, don’t try to do it alone. As much as I’m a hypocrite for what I’m about to say, it is true that you will have friends and family who want to help. Let them, but they aren’t mind-readers. You have to ask (HA!), and be specific – it makes it easier on them. There are also many groups online and on Facebook that can ease the lonely feeling – Young and Strong FIGHT Club and Sarcoma Alliance on FB are great for us. There are numerous cancer subgroup groups online as well. As a caregiver Synovial Sarcoma – Online Support Group is a great resource for up-to-date, word of mouth information caregiver to caregiver, patient to patient. The LIVESTRONG Foundation offers free counseling, both group and one-on-one via The Flatwater Foundation. And I can’t say enough about what a local support group here in Austin, Wonders and Worries does to support kids with parents who have a major disease.
Thank you so much to those of you who participated in my little survey. I think that you are doing a incredible service to caregivers, and those who just care, by sharing a little bit of your life. I also think you are doing an even greater service for yourselves. People have no idea what it’s like to be you, and by giving outsiders some insight you are in turn creating empathy, which is so valuable in fighting this badness. My hope for you is that somebody in your life can love you better than they did before. Share this with someone who needs it.
Thank you to National Cancer Institute and American Cancer Society, both of which are great resources for all things cancer.
Stupid Cancer meet up Stupid Cancer meet up last week with a portion of the GP6 CrewAnd I can’t say enough about what the people at Stupid Cancer are doing to bring awareness to the young cancer population. They have subgroups all over the country.