They say I’m NED (no evidence of disease), they say they got it all, all the margins were clean, it’s going to be ok. So why do I feel like this?
What is this? Like I have cancer everywhere. Like I can’t believe I had to go through this. Like my boobs are gone and maybe it’s setting in. Like my hair is growing back, hooray, but it’s so fucking short and I miss my luxurious locks. Like I am falling through the medical cracks of life.
I just read my last post. It sounds the same as above however with a black cloud over it.
This feeling is just not what I expected. However, to be perfectly honest, I had ZERO thoughts about life after cancer. When you’re diagnosed with cancer, life… stops. My life froze and some days I don’t remember at all because they were so bad I blacked them out. Everything leading up to the day we had a plan were the longest days of my life. I actually don’t know how I functioned. Some days I didn’t. Finally, we got a plan. Okay, there’s a plan, let’s execute it. Each day was, “I can do this, I can make it through, I can make it back to my bed tonight”.
I remember saying, when the first portion of the treatment was over, the AC treatment, I almost didn’t want it to stop. It was like an abusive relationship (I can only speculate). It was helping me survive however hurting me at the same time. I started taxol weekly and it was just another countdown. Side effects not as bad and I was ok. It was the last treatment, and there we were. Time to recover and prep for surgery. Surgery came and went. They cut it out. The cells that were leftover after being murdered by the chemo were removed.
Radiation. Truth of the matter, it’s pretty much nothing. I go in every day (every mother fucking weekday) at 3:30 pm. I go into a room and get perfectly positioned by two people so that the radiation aligns with my tattoos. There are 5 beeps and I am done and I leave. I haven’t had any skin reaction yet which seems pretty good for what they have told me would happen. However, they said the redness and potential peeling of the skin would peak two weeks after the radiation ends. I have to moisture my boob, armpit, neck and back every morning and night. I am very tired from it, fatigue is a big side effect.
So why do I feel like this?
I go to the same place everyday at 3:30 pm, mentally, it hurts me. I’ve had a cough/cold for about a month now. They say it is unrelated to radiation which is true because it started before. It’s only gotten worse each day. I told my oncologist of the cough about a week and a half after it started, thinking I shouldn’t take anything, but she replied “take some cough syrup?”. I am officially no longer a cancer patient and it’s scary. Who am I? Where am I? Who will take care of me now? I do still see my oncologist every 6 weeks during my herceptin treatment, however, it’s very robotic. “You good?” … “yeah?” … “k good”. But what more do I want? I have no clue.
“This” feeling all started to sink in when my original primary care physician didn’t have any openings to see me for an appointment regarding this cough, which had turned into a cold and lack of smell/taste (the true, true horror that is also leading to this feeling). She also didn’t even have an opening for an annual and I was put on a waiting list for a call back. Ok. So, I will try to find another PCP. Took me two doctors to find one and I couldn’t get an appointment until August 29th. I took it because I was desperate. On the eighth day of not being able to smell or taste last week, I called MSK and said “I’ve been sick for weeks, I can’t get an appointment with a doctor and I truly feel like if I walked into an urgent care and tell them my medical history they would not want to touch me”. I don’t think I would want them to touch me either? “I feel like I am falling through the cracks”, my voice cracking as I try to hold in tears at work. That’s really how I feel. I’m not a cancer patient anymore (thank goodness), however I’m still receiving treatment. It’s just, hard.
I got an appointment, same day, this past week on Wednesday, August 17th at MSK. They asked me to come in at 12:30 pm. I’m sorry, I have to work, the same work that I leave early everyday to get radiation (anxiety). Okay, 2 pm? Fine, I’ll make it work. I got there at 2:05 pm, it was a little crazy. I checked in for blood work and started talking to a very nice, older couple (mid 70’s). The man’s wife has a type of nasal cancer. She is getting radiation right now as well. She is doing something called “proton therapy”. This type of therapy is in clinical trials which I could have chosen to do that basically decreases the depth of the radiation and focuses more on the problem. For example, mine wouldn’t go as deep into my lungs, which can eventually cause lung cancer. However, my dad did research and there really isn’t much evidence of this and if there is, it is in people who smoke, have cardiovascular disease, etc. Also, it is 20 more minutes away and takes an hour longer than usual treatment. Sigh. The man brought up how young I was and I explained the BRCA gene.
Eventually they left, this was around 2:35 pm, I was still waiting for blood. I asked what was up. She said I was giving blood at 2:30 pm and seeing the NP at 3 pm. Ummmm no, that wasn’t the plan, and I left work early. Ok, breathe Caitlin, breathe. Got in for blood at 2:55 pm and they said I just needed vitals taken, no blood. Ummmmm no, they need to check my white bloods cells. “Oh yeah, you’re right”. This is where the tears started. “I’m just so tired”, aka, you’re all pissing me off so much and I am having trouble digesting it as a normal human. Remember I used to say how tired I was all the time? Welp it’s back. The girl taking my blood was very nice. She said this will all pass and it will be ok and got up and gave me a hug. I went upstairs to see the NP at 3:05 pm and 15 minutes later they told me to go downstairs to get a chest x-ray. Sigh. Ok. I went back up at 3:30 pm and asked them to call down to radiation to tell them I would clearly be late for my 3:30 pm appointment. I sat until 4 pm until a girl came up to me asking me to go downstairs for radiation before seeing the NP. I picked my stuff up, looked at her and said, “this is getting a little ridiculous”. It just came out and I regretted it right away. I shot the messenger.
I waited for radiation for about 5 minutes. I was all lined up. Radiation started. About two beeps in the girl came in to adjust something and I was crying. “What’s wrong honey???” … “I just, I, I am having so many thoughts”. I had to sit up and it became harder and harder to breathe. I was having an anxiety attack and I truly had no idea why. They kept asking me what’s wrong. “I am just having so many thoughts. I feel like I am laying here doing radiation and getting cancer everywhere”. Oh, that’s why. They asked if I wanted them to call the nurse or doctor. No. Eventually, one girl said, “listen, I know how you feel, I’ve been there, I am a survivor too”. I said I was sorry and told them I can do it again. I finished, with tears continuing to fall down the side of my face. When I was walking out, I spoke with the girl again and she kept reminding me to talk to my doctor and be sure to express my feelings. I agreed.
I saw the radiation oncologist. I see her once a week, of course it was today. She walked in and said, “so you still have this cough, oh, and your eyes are red”. Yes ma’am. Tears. I asked her about the lung cancer, just to confirm. She said there is 1% chance. Phew. I felt like I made the wrong decision of not doing the proton therapy. Maybe I still have, however, it’s done.
I finally went back up to see the NP. I was called in immediately. It was 5:30 pm at this time. She walked in apologizing, it was so crazy and they had to send someone to the hospital. I said it was 100% okay, I was so thankful they took me same day. Long story short, she thinks I have something viral going on however she gave me a Z-pack to make sure no infection occurs. I told her how I have been feeling. She suggests I talk to the psychiatrist. Okay, not foreign to this girl. She said they would call me, perfect.
I was walking out of the office at 6 pm and I wanted to look for the girl who I said, “this is getting ridiculous”, to. She was gone, there was only one girl left. I walked up to her and asked her about the girl who was wearing a beige sweater, she knew who I was talking about. I asked her if she could apologize to her for me, tell her I am so sorry, I had a bad day which is not an excuse however she didn’t deserve that and I truly shot the messenger. She said she would and she will e-mail her right now and smiled.
I left feeling, a little better. My eyes HURT. My forehead was sore from crying for probably 3 hours. Kim and his parents were at the golf club and he wanted me to come and ride around in the golf cart. Thank goodness. The weather was beautiful, I needed to get out and I needed to breathe.
Life after cancer is … different. It’s a new world and big transition. MSK called me to make an appointment with the psychiatrist and she only goes to basking ridge once a week so the next appointment is…. October 16. That’s not ok. I told Kim and he said, “well they have a lot of patients” … right, so invest in more psychiatrists. We clearly are all going through some major shit, help us. I am going to look into someone else in the meantime of course but, sigh.
I know I will get through this. I will become the new Caitlin O’Neill. I will help others get through it as well.