The thoracic surgeon told me that my new chemo-regimen would leave me unable to have children.
It hadn’t really crossed my mind with the first chemo-regimen. I had pretty good odds of staying fertile with that one, but apparently, the toxicity is cumulative, and my odds of infertility jumped from 25% to 99%. He said it in a blunt matter-of-fact way, and as soon as I heard the words I had a full-blown panic attack. Thank goodness the nurses jumped in with a paper bag to help me stop hyperventilating. I cried for days. I’ve never cried that much in my whole life. The nurses tried to help. One of them even brought me to a fertility clinic to discuss my options. I have none, and even if it were available, it would be too expensive, but somehow that visit helped me come to terms with my new reality.
One night a few months later, I was suddenly unable to breathe without stabbing pain, and I was rushed for a CT scan.
At this point, the initial shock of the news of infertility had been replaced with a new reality; a terminal diagnosis. My focus was now on living in the moment, trying to make the best of each day, celebrating each part of my body that hadn’t failed yet. My new hope wasn’t to have children but to live long enough to see another spring.
I wasn’t the only one to care about my loss of fertility.
When I was about to go into the CT scanner one night, the technician realized she would have to double back to grab the lead vest, I felt comfortable enough with her to say “don’t worry, just start the scan, I can’t have children anyway.” She paused and looked at me in a way that cut right into my soul, filling the hole of isolation I had felt in the preceding months, as I had come to grips with the grief of infertility all by myself. One could say that it was a tragic moment in a way to have tears in a moment of panic, but it’s a moment that was so real and so raw, that it gives me strength every day knowing I am never truly alone. That night I was faced with an undeniable reality: I was surrounded by so many people, just like the technician, who care deeply and they are all around me. These people aren’t just trying to save my life when they do their jobs, they care about who I am, and the quality of my life, on all levels.
My doctor struggled to find the words to tell me all my chemo treatments had failed.
He was trying to say “we are between a rock and a hard place” but he just got to the word ‘rock’ and then was obviously flustered, desperately trying to remember the analogy… I finished the sentence for him, tried to give him strength with my body language, and didn’t dare to glance over at my mother who was sitting there with me. I knew what this meant, and in a way, I was prepared. It had been a long time coming, and that helped me stay calm in that particular moment… but about 2 minutes later the reality of it hit me. All of a sudden I was clambering to try to think of ways in which I could survive one moment, and asking my team what it would feel like to die the next moment. It was like a Pandora’s box of questions without answers.
When someone sees me on the street, they have no idea I have cancer because I don’t look anything like what pop-culture thinks a cancer patient looks like.
I have short and wispy hair (not a bald head), strong filled-in eyebrows, and a puffed out face rather than a skinny one. I grieve the loss of my body, and not just in its ability to just “exist-without-pain” or “exist without-cancer”, but in this so-called ‘superficial’ way about appearance. The more I think about this, the more I think that we are told looks are ‘just superficial’ (and of course they totally are), but it’s becoming shockingly apparent just how much the people around me seem to value those things. And yet, even though when I go out in public, people stare and some look apprehensive when they see my wispy hair, giant bandages, and yellow-tinged skin, I've come to realize that when I smile and laugh people smile and laugh with me just as they always did. I guess it’s not an either/or situation. I’ve learned that it’s OK to look back on what I had and miss it, and at the same time, I truly am learning about the power and truth of inner-beauty.
There is often a fine line between tragedy and comedy, so I spend my days making jokes, bad jokes, any kinds of jokes.
I’ll laugh with myself, my parents, my friends, and my health care professionals. In more serious times, I use a meditation technique that has yet to fail me. I breathe out “blackness” and negativity and breathe in a “lightness,” joy, hope, and strength. This helps me process what’s stressing me out and hurting me at any given point, but to let go of the bad. It has also helped me tap into my sources of strength, take moments to be grateful for what I have. Most of all humour and meditation give me a sense of control.
I'm in a weird position.
The sicker I feel, and the more care I receive, the more independent I want to be. I feel very lucky. My parents help me out with laundry, food, and rides to the hospital, but they've supported my choice for me to live in my own apartment. They understand that I need to live my own life, no matter how redefined it is right now, and help without overstepping any boundaries. I'm so grateful for them. One of my 'cancer friends' is alone in his apartment, with no external support, while I have another one who is in high school and living with her parents. I know I'm incredibly lucky to be in the situation I'm in. Being grateful for these things helps me get through the days and redefine what a successful life means to me.
My boyfriend is there for me every day.
We spend time together as though I’m not sick even though I can barely leave the couch, need help up the stairs, as well as to get in and out of bed. People call him my “white knight” but I worry about him. He seems to be in denial about the gravity of my illness, and the more my health deteriorates the stronger his denial seems to be. I don’t want to press the point, but every time we talk about prognosis he acts as though everything is going to be fine. All I know is that I don't want my boyfriend to walk into my bedroom to find me dead one day, and I don't want to die without knowing he'll be OK.
I'm probably the only young adult that my home care nurses see on a regular basis.
They come to my house 3 times a day, and some of them talk to me as though I'm in pre-school, and unable to look after myself. I'm an adult, not a child. I'm sick, not stupid. My body is weak, but my spirit is strong.
I’ve decided to stay at home for the longest time possible.
My home-care nurse keeps on telling me that I’m close and tries to call the ambulance on me to have me admitted to the hospital. I feel as though if it’s coming close I’ll move to hospice care, but that I know my body well enough to try to hold out and stay at home for the longest time possible. I have my bed here, my cat, my books, my piano, and my friends can stop by whenever they want. I worry about being home while my body is shutting down too though, and I fear that someone I love will find my cold body one day. They know how little I like being in a hospital or in any institutional setting, so I tell myself that as long as they’ve accepted it as a possibility and aren’t themselves terrified of it, I’m making the right choice for everyone involved.
I was such a Type A my whole life that I waited until I was too sick to function to stop school and work.
I guess the decision was made for me by my body. The year before, I was working at a temp agency and they were not very accommodating. I had been calling into work sick a lot because I was peeing blood and vomiting often, but the doctors would send me home with antibiotics. My boss at work fired me and told me that they expected me to be at work even if all four of my limbs had been severed. I wish I had fought for my rights there and then, but I was just too sick to do anything about it. When I was finally diagnosed, and as soon as my doctors realized my illness was serious, I stopped working. I had been working at a call-center doing surveys and market research and I was surprised at how nice they were about everything. I was also enrolled in university at the time. They were also very accommodating, even if a little perplexed as to why I was leaving. Nobody knew what it was then, but it helped me to have people give me space to look into what was going on physically without guilt trips. Those little things stick with you.
After my medical team announced that all treatment options had failed, I was offered radiation to potentially extend my life.
At this point I had received numerous surgeries, had a giant open wound on my neck, and was sleeping about 16 hours a day... but I wanted to live to see my cousin get married 7 weeks later. I thought it was a no-brainer, I would do all the radiation they could possibly give me and maybe I would even make it to the May long weekend, my favorite time of the year. This was my new goal. Making it to May. Two weeks into intensive radiation, the skin had started sloughing off all around my neck wound, and peeling off the side of my face. I felt sicker than ever and thought I might die of the side effects of the radiation. Quitting any kind of treatment had never occurred to me before, but in the last few weeks, I had spent so much time reassuring my family and friends, that I had accepted my upcoming mortality. Having tried to convince those around me to not fear death so much, I worried what they would think if they saw me in a casket with half my face covered up. It is really important to me that my funeral serves to reinforce how positive a life that I've had, and the thought of my loved ones cringing as they saw what had become of my body was the final straw. I made the hardest call I've ever had to make to my mother and sobbed as I told her I couldn't go on with the radiation. I have never been so torn in my life, but I'm happy that I trusted my instincts. I lived to see both my cousin's wedding and to go camping for the May long weekend. Even if I hadn't survived this long, the decision was the wise one to make for me. Still, those kinds of decisions and hard conversations stay with you. I got the courage to stand up for myself more and more after that decision, saying 'no' to any and all 'miracle cures' others kept finding for me. I just wanted to live as normally as possible.
I wish my family wasn't so scared of my upcoming death.
I don't have the luxury of going into denial about it, and I'm at peace with it. Accepting my prognosis has actually liberated me to focus on the time I have left, and on planning my funeral. I used to think I'd spend my 20s planning a wedding and I laugh at myself often thinking that planning a funeral is in fact quite similar. The funeral planning means a lot to me. I've been giving some of my things away or labeling them for people that might like them when I see something that I know one of my friends will really like... but funeral planning is special. It's an opportunity to share who I am, what my life means to me, and what those around me have meant to me. Given the fact that many of my friends and family have been scared off by the social awkwardness that comes from my prognosis, or that on many days I just don't have enough energy to communicate with anyone beyond my boyfriend and my parents, it's my only chance to share my 'favorite things' with all of those who know me. And this will carry on my legacy for me once I pass. Having this type of control over the future helps me reconcile the fact that I won't be able to make the impact I had hoped to make in the world as an adult.
My vagina hurts.
Is this how 80-year olds feel? If so, how do they have sex? My premature menopause ended a few weeks ago, but now, not only have I lost any sex drive but my vagina hurts too much for sex, and my skin has become too sensitive for lube. I told my symptom-management doctor about this. I know he wasn’t quite set-up or used to having to do gynecology work, but he brought a team in to help figure out what was happening, and we had some laughs together. If they hadn't laughed at my bad jokes and black humour while I had my legs spread out on the examination table, it would have been so awkward. I went home with lube with hormones in it. It didn't help with my sex drive, but it worked well enough that I thought to myself that post-menopausal women must be glad this stuff exists.
By the time I was 26, I had no breasts.
I was in menopause. My biological clock came to a screeching halt. I had to flush the toilet twice after I peed because I was so toxic from chemo. Sex was not a priority. My husband's desire to have sex has changed too between cancer fatigue, appointments, bad news, progression, not wanting to hurt me, and my changed body. We still have a shared intimacy that includes cuddling, kissing, touching, holding hands, but having sex just isn't the priority that it once was.
We’ve talked a lot about this with each other.
It’s not always easy to talk about, but I am not going to be in a relationship that doesn't have good communication. My husband doesn’t really have a choice about that. Especially with being sick and having cancer. I have virtually no sex drive, no desire, but I have a desire to still have intimacy and we needed to talk about that. We've been together for 13 years. I kind of forced him into talking at first, but his communication is better than I could have ever imagined in a partner. He may not always be the one to bring it up, but we have endless conversations, hundreds of conversations about sex and it has really alleviated the guilt I used to feel. It’s so easy to get it all wrong if you don’t talk about it. I would just go into a tailspin if we said nothing and went two months without having sex. I’d be thinking “Oh God, what's he thinking” or “Is he getting it from somewhere else?" And then he’s thinking, “She doesn’t want to, she’s so sick now and I don’t want to hurt her” and meanwhile I do want to. There are so many things that can be misinterpreted by saying nothing.
Although the conversations, especially in the beginning, were brutally difficult, they helped us in the long run.
They took away the guilt and we were able to express how we feel to each other. And then from that, in a weird way, the other aspects of intimacy have been celebrated. It's not to say that sex is off the table, it's just not our priority. It’s not, “Oh, shit, there's something wrong with us because we only had it twice this week.” It's watching a movie, and cuddling, and doing that thing that you only do with a partner. That’s intimacy. There’s often just no actual intercourse.
I have two fractures in my pelvis and a compression fracture in my lower spine because the cancer is all through my bones.
I'm really fun to have sex with! Everything hurts. I'm on so many narcotics. I'm just constantly in pain. I have the spine of an 85-year-old. I am no spring chicken even though I'm in my 30’s. The spontaneity isn't there as much. I can't really have the “Whoa, nice move -- I wasn't expecting that” kind of sex, because I need so much warning. Everything is a little more planned or calculated. I might need to plan around when I take my pain medications, or I might need to take a breakthrough dose. The spontaneity is gone.
I honestly think a geriatric video, some kind of guide, that’s not too graphic would help.
Something where everybody is clothed, but there are demonstrations of geriatric or seniors’ sex. I think that would be very beneficial. It's not like I can just flip from one move to another anymore. I'm flat out – so-geriatric-feeling. I don't even know how to explain it, because it's just so different.
I think the reason for sex is a little different now too.
It's to feel that intimacy and that closeness with my partner instead of, "I'm feeling like a horndog, let's not go out." That expectation and excitement are different. It's not gone. It’s just very different.