*Update June 2015: At the writing of this post, I was starting my third month of chemotherapy. In fact, this was my only my fifth infusion. I was still quite shocked and traumatized by the idea that I had breast cancer and I was trying really hard to keep up a public brave face. I was terrified. And I was exhausted from keeping up the facade that I was doing okay. I was pretty devastated but trying not to show anyone that fear.*
My adventure with Herceptin.
Thursday was my first treatment with Herceptin. I will be taking this medication every week for an entire year (yay... more chemo!). My cancer is HER2 positive -- which has something to do with estrogen fueling my cancer. This medication is supposed to slow and/or stop that growth.
I went to the cancer center expecting to be in and out in about an hour... ended up being there for a few hours. The first dose is 3 times as long as the weekly dose. So, I had to take this IV for 90 minutes. My favorite oncology nurse, Theresa, warned me that Herceptin causes some random side effects -- not for everyone of course, but for some of us. I listened to everything she said and thought that I would probably be one of the folks who didn't have a reaction. I'm typically that girl. Guess my typical days are over because 60 minutes into my drip... I started reacting.
I completely forgot about that this appointment was scheduled for 830 am. (I am really not a morning person) I remembered that I had to be at the cancer center at 1 am. I mentioned it to my mom -- wasn't sure that she heard me or if she was sleeping. I contacted my boyfriend, who was just ending his work night. He said that he would take me if I woke him up.
Interestingly enough, my mother did hear me and she got up in time for us to make it to the doctor. Worked out well because I couldn't get in touch with my boyfriend and by the time I did reach him, my mom was ready to go. Here's the thing... my mom was willing to battle rush hour traffic to get me there on time, but she couldn't bring herself to come into the hospital and upstairs to the cancer center.
I went to the cancer center expecting to be in and out in about an hour... ended up being there for a few hours. The first dose is 3 times as long as the weekly dose. So, I had to take this IV for 90 minutes. My favorite oncology nurse, Theresa, warned me that Herceptin causes some random side effects -- not for everyone of course, but for some of us. I listened to everything she said and thought that I would probably be one of the folks who didn't have a reaction. I'm typically that girl. Guess my typical days are over because 60 minutes into my drip... I started reacting.
Let me put this in perspective for you.
I completely forgot about that this appointment was scheduled for 830 am. (I am really not a morning person) I remembered that I had to be at the cancer center at 1 am. I mentioned it to my mom -- wasn't sure that she heard me or if she was sleeping. I contacted my boyfriend, who was just ending his work night. He said that he would take me if I woke him up.
Interestingly enough, my mother did hear me and she got up in time for us to make it to the doctor. Worked out well because I couldn't get in touch with my boyfriend and by the time I did reach him, my mom was ready to go. Here's the thing... my mom was willing to battle rush hour traffic to get me there on time, but she couldn't bring herself to come into the hospital and upstairs to the cancer center.
When one hour becomes three... welcome to chemo!
So... when it seemed like I would only be upstairs for an hour, she was willing to sit in the car and wait. When I called to tell her it would be more like 2 hours, she still didn't want to come upstairs to the cancer center. I shrugged it off, I sort of knew that she had a problem with watching me take the chemo so I tried not to be upset that she would rather sit in her car (nice car that it is, mind you) than sit with me.
But I wasn't very happy about it. What can I say? I can't force someone (even my sweet loving mother) to deal with something this harsh if she's not capable of it. Its good enough that she was willing to get up so early, on such notice and take me down there. She didn't have to do that -- especially when you add in the misery of rush hour traffic.
Can you feel alone in a crowded room? Yes... you can.
I sat in the cancer center like I said... getting yet another chemo drip, feeling really lonely and scared. I know all the nurses that work there (I see them all the time), I trust them, I know they will look out for me... and yet... I felt so absolutely alone. My mom was really only a phone call away -- she was just a few feet from my side when you think about it but I swear... I felt like I was alone on a deserted island.
Let me add... lots of folks go to the cancer center alone and take their chemo like a champ, all by themselves. I honestly don't get it. I don't know how they do it. Even if my boyfriend and I don't talk at all, his presence by my side comforts me in a way that I cannot put into words. But we do talk, and laugh and generally transport ourselves out of that dreary-trying-to-be-cheery place and the hours just fly by.
So... my mom didn't want to see me hooked up to the IV and she stayed in her car, listening to the radio and probably working on her puzzles. Meanwhile, I read my book and kept stealing glances at the chemo bag trying to wish it to go faster, so I could go back home and get some sleep. And then... an hour into the drip, I started feeling really cold.
Sometimes trying to be strong is not the right choice.
One of the side effects was getting rigors (fancy medical term for the shakes you get when you're really cold). I was dressed warmly and I had one blanket... but I started to feel like the temperature around me was dropping.
I was determined to leave on time. I didn't want to keep my mom waiting and I wanted to go back to bed. I looked at the bag and guessed that I had only 30 more minutes... so I didn't say anything. But dammit if those doggone shakes didn't just fall on me hard within about 5 minutes of me deciding that I wasn't going to say anything. Theresa had also told me that if I did experience any side effects, they would have to slow down the drip and give my body a chance to adjust to it. Unlike with other medications, they weren't likely to stop giving me the medicine just because I reacted -- it was going down, regardless. So, like I said... I weighed my options and figured I could just hang in there for a few more minutes.
I'm always so wrong in my estimation of what works for me now. And I was wrong in this case too. Within 5 minutes I thought my teeth would fall out of my head from the chattering... I finally got the nurse's attention and told her that I needed another blanket.
So afraid, so alone... so many tears. I am terrified and tired of being strong.
It sounds silly to me now... but when she looked at me and saw how cold I was, I just started to cry. It defies reasonable explanation... but I was terrified and I was alone and I was actually too afraid of shouting out loud that I needed help, to even get her attention. I honestly sat there, shaking and shivering like a nut... waiting for someone to move near enough to me that I could catch their eye and let them know I needed help.
The area where we get chemo treatments is a big open area filled with lots of seats. There isn't any real privacy in there. I didn't want to disturb anyone else... especially when I felt that whatever I was going through just couldn't be that serious.
I cried. I was alone and if someone had been sitting there with me, I could have leaned over and asked them to get a nurse. But because I was alone, I could either struggle to get up and walk to their desk, shout out loud... or wait (I chose the latter)... until someone saw me.
I was afraid. Even in that safe space... I was absolutely afraid.
It doesn't make sense -- so if you're thinking to yourself that my actions didn't make sense, you're right. Keep in mind that I was really tired (didn't get much sleep the night before), I was hungry (it was too early to eat so I didn't), and I was disappointed (like a child) that nobody was there with me. So, I guess my reaction could be considered a tantrum. I don't know.
All I know is that without realizing just how scared I was... I was balling my eyes out while my nurse worked on my IV, adding this and that... stopping the other thing, trying to get me balanced out. And I was ashamed of my own tears and fears. That part really makes little to no sense as well. There wasn't one soul in that room who did not understand what I was going through or how I was feeling. But I felt like such a baby for not being able to deal with it alone.
All I know is that without realizing just how scared I was... I was balling my eyes out while my nurse worked on my IV, adding this and that... stopping the other thing, trying to get me balanced out. And I was ashamed of my own tears and fears. That part really makes little to no sense as well. There wasn't one soul in that room who did not understand what I was going through or how I was feeling. But I felt like such a baby for not being able to deal with it alone.
This thing is hard on everyone. I'm not the only one suffering from my breast cancer experience.
I'm getting it together... even thinking about it makes me a little misty-eyed. On the ride home, my mom and I danced around the conversation (in our own way...) and she confessed that it was hard for her to go with me to chemotherapy. I knew that, even without her saying it... and it made me feel worse for having to ask her to take me. And before you even think it, I know she doesn't mind, she told me she doesn't mind... and I get it. But I also know that I don't like asking her to deal with this when I know it breaks her heart the way that it does.
She asked me to give her time to prepare herself mentally to go to the treatments. I will do that. And I might ... just might, mind you... have to ask a couple of you to come and hold my hand from time to time. Just to give her a break. My boyfriend has been such a soldier but it seems like he too just needs a break from my breast cancer.
Consider this my lifeline to call a friend.
If I call... and you can't do it, or you don't think you can handle it, just tell me that upfront. I won't be upset. I truly understand. I don't want to ask someone to do something that is too much for them, and they do it out of a sense of obligation and then have to deal with the emotional aftermath alone.
Just keep praying for me. It seems like it would get easier... but in some ways, its not.
I wanted to add... I'm a really private person. You probably can't tell that from all the personal things I've shared here on this blog. As much as I can't stand being alone in chemo, I know that its going to happen again and again... as I go through this process. It is simply something I'm going to have to get used to. I may have been hormonal, and that's why I cried. Or it could be just as simple as ... I missed my mom. I don't know. What I do know is that it is really hard for me to allow anyone to see me while I'm getting my chemo treatment and yet I absolutely hate going there alone.
Each time I think that I've got this under control, I realize that it is much harder than I thought
It is such a vulnerable position. I can't really explain it. I feel naked there, even though I'm fully dressed. All that to say... If I don't ask you (or take you up on your offer) to sit with me during chemo please don't take it as a personal affront. I don't think I can articulate this well... but what I'm trying to say is that I only feel comfortable with a few people seeing me in my total nakedness. And chemo (while fully dressed) feels really, really exposed.
I hope you understand.
To learn more about Herceptin: http://www.herceptin.com/
