Today Was Rough

Yesterday when I met with one of the PA’s at my oncologists office, I told her about how tired I was last week after my treatment and that I am starting to have muscle weakness, pain in both of my legs, and difficulty walking, and so she explained to me that this may be due to the fatigue but they are going to keep a close eye on it and I am supposed to call if it gets any worse before Tuesday. She also told me that the fatigue is cumulative and that I’m probably going to get more tired. Today when I woke up I felt so tired even though I slept really well and of course I woke up in pain.

I decided to take a shower and while in the shower I just started crying as I was washing my hair. This is going to sound really weird, but I am frustrated with still having the majority of my hair.  I know that some people keep their hair during chemo but it makes me uncomfortable that I still have mine, especially when all of the chemo medications that I get are supposed to cause total hair loss. My hair has only thinned to about half of the thickness it used to be. Also brushing my hair causes me pain because I have tendonitis in my hand and the hair that does fall out makes my hair really tangled. (Hopefully this weekend we are going to either straighten my hair or shave it)

When I got out of the shower I sat on my bed and continued to cry for maybe about half an hour because I realized that I am just going to start feeling worse. And that made me really upset because I hate pitying myself and that’s what I felt like I was doing. But I also hate that I no loner have the energy or the strength to run or really do any exercise, so I no longer have that outlet.

I also had a doctor’s appointment to day with a physical medicine and rehabilitation specialist which was beyond infuriating. I’ve talked before about how I have chronic joint pain since kindergarten and I have seen many since then about it. None of them have come up with an answer of why. I saw this specific doctor about 3 weeks ago and he did an exam, said he had no idea what it could be, and sent me for blood work. One of my friends has a condition called Elhers-Danlos Syndrome and she had told me before that I should ask my PCP about it, so I decided that I would ask him if that could be my problem. He immediately shut that thought down and was like yeah your flexible but that’s probably not it. So I did the blood work and I saw him again today. He went over my results and my vitamin D is low and and sedimentation rate is high. Vitamin D deficiency can cause pain in the joints and he wants me to take a supplement for that believing that it will solve my pain problem. Then he brought up Elhers-Danlos again saying that the only way for him to diagnose me with a skin biopsy and genetic testing. He asked me how much did I want to pursue that because he really didn’t think that it was worth it. I told him that I am tired of not having an answer. Then he asked me about how I’m holding up mentally with having cancer. I just shrugged. I honestly just wanted to leave because it just seemed like he wasn’t willing/had no intentions to actually try to figure out why I have joint pain. He then wanted to tell me that I’m strong and going to get through this and the importance of going into remission blah blah blah…and at that point I didn’t care what he said I just wanted to leave. He finally ended with asking if I had any questions and telling me to come back after I am in remission. I said okay but I have no intentions of going back when I am in remission. So after I left I walked to the lobby of the hospital (his office is in the medical building next to the hospital) to wait for my mom to get off work (she works at the hospital) and I cried. When my mom got off she asked me how I was and I told her I didn’t want to do this anymore. I didn’t want to do treatment and I just wanted to be done with doctors for a while. I told her about what happened at the appointment and that I’m tired of not having a reason of why I’m in pain. I just want a doctor that is actually going to put in an effort instead of telling me to lose weight or take Vitamin d and come up with a diagnosis.

I guess today I realized just how unhappy I am. I thought that my depression was at bay but it’s not, I’ve just done a really good job of suppressing it. I wouldn’t say that earlier I was suicidal but if a car was coming at me, I’m not sure I would move out of the way. For me that feeling sucks because I’m like I’ve come so far and now I’m just getting depressed again.

I Don’t Know How Much More I Can Take

This past week has been rough. Actually this past month has been rough and somehow I managed to keep it all together until last night. Usually when I fall apart I come here and I write about it and process it, but I was so upset that I couldn’t. I sobbed for a solid hour and then cried myself to sleep. My mom came in when I first started crying asking me if I had eaten or if I wanted her to make me something. Hunger was the last thing on my mind. She realized I was crying and came and sat next to me on my bed. She asked me what was wrong and to be honest I really didn’t know. I just told her that I was frustrated that it was becoming harder for me to walk up the stairs. And of course she went to well you need to do leg lifts because it sounds like your losing muscle. Well no Fucking duh I’m losing muscle. I spent almost 2 days in bed because I was so nauseous and tired from my treatment and I haven’t really been able to eat. So I told her that if she was just going to tell me that I need to do leg lifts, to leave because she doesn’t get it. She asked me to tell her what she doesn’t “get.” I told her that she doesn’t get that I’m not supposed to be here. I was supposed to be at University not living at home sick with cancer. I have to see all of my friends out living their lives, having fun at university, or just simply, not sick. That was supposed to be me. And that was the end of our conversation. I continued to sob and she just sat there and hugged me.

Me not going to University this year is mostly what I am upset about but there is more to it. For instance, my mom is more attached to my hair than I am. Today I was talking about just going ahead and getting it shaved and she asks “are you sure?” I know my hair is just so far has just been thinning, but because of the fatigue it affects my muscles and joints so brushing out my hair is a painful, tiring, and long task. And IT WILL FUCKING GROW BACK!!! I don’t understand why she cares so much about me keeping my hair. The only reason I haven’t shaved my head is because I’m going to have to just go with my dad because she said that she’s going to cry. If anyone should cry it should be me because it’s my hair!! But I’m okay with losing it because it’s not like it defines me as a person or is going to change me in any way other than my appearance.

Another thing is that in July my dad decided that we needed to get rid of our storage unit in order to save money and that we would move everything into the downstairs of our townhouse. The original plan was that we would go through the stuff and get rid of things and it wouldn’t just sit. Well I went through my boxes (the one’s that were labeled as mine from my room) and I got rid of most of the stuff because I had no use for it. As for my parents, my mom has tried to go through stuff herself but she works 3 jobs (Monday through Friday) and is up from 5am to 10pm (sometimes later) most days. But she is just one person and cannot go through all of it by herself. My dad on the other hand I have only seen him going through things once. All he does is talk about how he’s going to go through “X” number of boxes but he never does it. The vast majority of the stuff is from their old bedroom and I can’t go through it because I don’t know what they want to keep or throw away and most of the time I am not feeling well enough to. So I am stuck in my room (because downstairs isn’t an option and I don’t have a purpose for being in their room) all because my dad can’t peal himself away from the damn TV for 2 hours to go through his crap. I would love to be able to have my friends come over and keep me company but there’s no where for us to be. My room is too small and has barely enough space for me, my nephew, and our stuff. My nephew (who is now 12) still shares a room with me. He was supposed to be moving downstairs to the living room but he can’t because there’s a bunch of boxes.

Next up, my treatments. They make me feel like crap and I feel like it’s completely pointless and are just making me sicker. There is a slight possibility that I have Bleomycin lung toxicity. I doubt it and my oncologist doubts it but the slight decrease in my lung volume is slightly concerning, so I have to do another round of PFT’s in a week and a half. On the bright side my cough has gone away for the most part but the nausea is still strong as every. After my first two treatments I had to take anti-nausea medications every 3 hours for the first 3 days after treatment and then days 4 and 5 I could get away with only taking 1 or 2 anti-nausea pills. After this past treatment I am on Day 4 and so far I have had to take 4 and I am still nauseous. My friend pointed out to me that I have just been getting sicker. So on Tuesday when I see a PA I’m actually going to ask them about stopping treatment. Part of me want’s to just stick it out because I only have two more and I’m almost done, but the other part of me is like I’m probably just going to start feeling worse and I’m not sure that I can handle that.

Overall I am really frustrated with the loss of control. The only thing that I really feel like I have control over is keeping a smile on my face and pretending like everything is okay.

The Hardest Part Of Having Cancer

Lately I have been M.I.A. from Facebook, Instagram, and Snapchat because a lot of my “friends” and “followers” don’t know about it. When I have a really good day and I’m feeling and looking great and I want to post a picture saying “I’m so happy to know what not being nauseous 24/7 feels like” or “3 poisons down hopefully 3 more to go…and then radiation!” I decided not to because my parent’s don’t want me to post anything about me having cancer on social media. I’m 18 and my parents still try to control the content that I want to post (my parents don’t know about this blog still because they would probably kill me and my dad would lecture me on how I shouldn’t post about this stuff online for XY&Z reasons). Lately I haven’t been able to make decisions for myself and I don’t have control.

I can’t control how people treat me. The only people that haven’t treated me differently are my friends who I told if they treated me differently I wasn’t going to talk to them or that I don’t want or need their pity. Other than that everyone else has treated me differently in some way. I’m okay with the question of “How are you?” here and there but I’m not okay with when I’m asked “How are you really doing?” Because if I wanted to tell you how I was really doing I would’ve told you or for that day I might really just be doing good or okay or fine or that’s what I want to believe. I don’t need people to be my therapist because I see one weekly and we talk about how I’m really doing and if between sessions something changes or I have her cell phone number and I can text or call her.

I can’t control conversation topics. I understand that other people have had friends and family members that have gone through chemotherapy and radiation but that’s not what I want to talk about. Most of the time I don’t want to talk about the fact that I have cancer or anything related to it. If I’m out, that means I’m having a pretty good day, because I could be at home in my bed. I’m totally fine with advice for nausea because that’s pretty killer but other than that I don’t really want unsolicited advice.

I don’t have control over my body. First, I am kinda a science experiment for my doctor because the type of Hodgkin’s Lymphoma I have is REALLY REALLY RARE!!! as I’ve been told maybe about 50 times since being diagnosed. So this means he kinda gets to figure things out treatment wise as we go. Next, because of treatment I have become anemic and that has caused some serious muscle fatigue in my legs. I can’t stand for long periods of time, I can’t walk far distances, or do really any strenuous activities. For example, I just had a doctor’s appointment with a doctor who might be able to come up with a diagnosis for the chronic joint pain that I have had for years, and he was on the fourth floor of the building. Walking up four flights of stairs has never been a problem for me. I would run up the stairs like it was no big deal and barely be out of breath by the time I got to the fourth floor, but this time I was out of breath at floor two, and struggling to lift my legs on flight four. My body is getting weaker and there’s really nothing I can do about it. And I do not want to use a wheelchair.

I can’t control Jealousy. My sister also has cancer but a completely different type and she also is an attention whore. Once we found out that I had cancer, we didn’t tell her because we knew that she was going to try to find a way to make it about her because the attention was going to shift to me. My sister and I are polar opposites. She likes the attention she gets from being sick, she likes everything to be about her, and she like sabotaging things. I hate getting attention just because I’m sick, I don’t like everything to be about me all the time, and when things are going great for me or anyone else, I like to keep it that way. My sister is jealous of me because I still have my hair. If you had never felt my hair before I started treatment you wouldn’t know that it has become a lot thinner. My sisters hair fell out within her first few treatments. I was actually looking forward to my hair falling out because most days I just don’t want to be bothered with it and I bleached and dyed it purple so it’s really damaged and purple…I kinda want it gone. She’s also jealous that our mom has taken off work to take me to my treatments and that they are giving me all of this attention. The only reason my mom takes me to my treatments is because my dad wants her to.

The hardest thing about having cancer is the loss of control.

Cancelled Treatment

So it would of course be just my luck to get a sinus infection and pink eye right now. On the bright side my blood counts (specifically my white blood cell count) is still within a normal range meaning that I don’t have to be admitted to the hospital for antibiotics! So a week of Augmentin for me and another week of a break from treatment. My treatment was also cancelled because I have had a progressive worsening cough and they aren’t sure if it is one of the chemo meds damaging my lungs or if it might be something else. They did have me repeat my PFT (pulmonary function test) and it showed a decrease in lung volume but it was still above 80%. I see my oncologist next Monday so lets hope that the sinus infection, pink eye, and cough go away and that my blood counts don’t plummet.

Feelings Suck Sometimes

I’ve talked before about this guy that I like and since telling him about me having cancer we really haven’t talked. We Snapchat occasionally and we have texted once. I get that people really don’t know how to react to that information and were shocked by my nonchalant attitude about it, I am still the same person. I really miss the conversations we would have. When I saw him this past weekend it was weird. It was like he wanted to ask how I was doing but didn’t. He also gave me what I call the “sad puppy dog eyes.” It’s the look people gave me a lot when I told them I have cancer. They tilt their head to one side, open their eyes a little bit wider, and in most cases, are completely speechless. Usually when I like a guy and they do something like this, I would lose interest and not like them in any other way than a friend and that didn’t happen. My therapist pointed out today that I’ve never told him that I hate when people pity me or give me the “sad puppy dog eyes” so I can’t be frustrated that he didn’t know that. I talked to one of my friends about my confusion of why I still like him and she told me that I need to talk to him. Here’s where my anxiety comes into play a lot. I can’t bring myself to text him. I’ve been told by multiple friends to just text hi. But the problem is what am I supposed to say after that. He could just reply back with a hi and nothing to continue the conversation. I also suck at keeping conversations going which is why I prefer to talk to people in person than over text. If I had it my way I would want us to sit on the floor and talk. When conversations didn’t happen just sitting in silence with him was fine. I really miss that.

Why I Don’t Always Tell Doctors About My History of Severe Depression

So a little less than 3 weeks ago I went to see a Radiation Oncologist because that’s what my oncologist wanted me to do. That appointment ranks very high like in the top 5 worst doctor visits I’ve ever had. First off it took her an HOUR to come into the exam room and when she finally did show up it was obvious that she had probably just looked at my chart. Then she blabbed on and on about how rare the cancer I have it and all of the things that I have already been told about it multiple times. When she finally shut her mouth about that she wanted to do an exam. I got up onto the table and then she sees my arms (which are covered in scars from 3 years worth of self harm) and says “looks like someones been scratching ya.” Who in their right fucking mind says something like this. If I hadn’t been clean from self harm for almost 2 years now and/or if I was going throw a bout of severe depression this for sure would’ve set me off. But I took a deep breath and said “I used to self harm, but I will be 2 years clean in November.” Instead of saying something like “that’s great” and moving on she says “Well I bet your glad to be done with that.” I guess she didn’t realize that I’m not done with that. Anytime I have a rough day or start to get depressed it’s a struggle not to go back to that form of coping.

So fast forward to this Tuesday. I met with my oncologist and told him what happened when I met with the radiation oncologist. He seemed kinda shocked when I told him about it, but then he realized that he didn’t even know about it. The reason he didn’t know about it is because on the intake form there are 3 yes or no questions. 1. Are you generally satisfied with your life? Yes. 2. Do you feel severely depressed? No. 3. Have you ever considered suicide. Yes. Because of how I answered the questions it doesn’t raise any red flags because 2 of them were for the here and now and if I ever considered suicide it could’ve been yesterday or 5 years ago but the when is not what’s being asked. The next reason of why he didn’t know is because I don’t just say oh by the way I have been severely depressed resulting in 4 psychiatric hospitalizations. I don’t say this because it’s a mood killer and when doctors learn of this information they make it a point to try to become my therapist and ask me how I’m doing and they give me the sympathetic puppy dog eyes. The reason I haven’t been severely depressed in the past year and a half is because I don’t let myself dwell on the shitty stuff for a long time. I give myself 5-10 minutes to feel crappy about myself but then I force myself to move on and find something positive to do. Of course after my oncologist found out this he told me that it’s important to tell doctors about my past history with mental illness because they need to know for different medications. And then of course he took on the role of trying to be my therapist to which I said “I see my therapist on a weekly basis.” But the way his brain works is that we may have moved on from a subject but he is still processing it in his head and will randomly bring it up again. Which is kinda frustrating but I get it.

It’s not only doctors that I don’t tell about my history with mental illness, it’s friends and family to. I hate when people feel the need to treat me differently because I have the label of depressed. I see a therapist for a reason and there’s a good chance that I will continue to see one for a while. But it’s not any of my doctors jobs to be my therapist.