Throwing Stones

We all know that saying “those who live in glass houses shouldn’t throw stones” well soome stones were thrown and I’m not even going to bother helping to clean up this mess. It’s rare that I get so angry I yell, I usually just cry and sob hysterically (which is just such a great defense mechanism *said sarcastically*) and it’s even rarer for me to yell “I should just kill myself” and even rarer than that is for me to get so angry that I have a violent outburst (I never end up breaking anything…if anything I am the one who gets injured). Now for the rarest beast of them all, all three of those things happening within the same day. Let us now venture on to the events of Thursday, April 24.

The day started off with me having a follow up with my gynecologist to discuss my lupron injections. Besides me being hot all the time, I haven’t had much endometriosis pain and the best part NO PERIODS!!! There is one potential problem, when I saw my oncologist the previous week, my liver enzymes were elevated and my oncologist was not super concerned but wants repeat labs in 6 weeks. [they asked if I had taken any tylenol or had alcohol recently and I said not within the past month or two, forgetting that I had alcohol at the beginning of April. My mom later corrected me and was kind of upset that I didn’t remember that but I was stressed with finals and packing my stuff that it slipped my memory and still should affect my labs that long after.] I let my Gyn know about those results she also wasn’t super concerned and agreed with the repeat labs in 6 weeks because if they are more elevated it is most likely that my liver is struggling with the injection. She asked if I had taken any tylenol or had any alcohol recently and I hadn’t within the last 2-3 weeks of my labs. We discussed some other things but overall everything is going pretty well for treating my endometriosis. My mom and I went home and then she took my dad to work. When she got back that was when things went downhill. I was in the kitchen trying to decide if I wanted to eat or not and my mom says “just so you know there’s something your dad asked me to do.” And then she pauses and so of course I ask “what?” and I have to ask it multiple times. To which she finally responds “your dad told me to pour out all of the open alcohol (there were only two bottles that really didn’t have much in them) because your liver enzymes were elevated and I didn’t tell him.” To which I yelled “What the hell! So he thinks I’m an alcoholic!” she tried to say something to which I just said “what the actual fuck” and punched a wall screamed and went upstairs, slammed my bedroom door, and cried for about three minutes. I then went back downstairs and told her “neither of you get to know what my next lab results are, I am not going to tell you.” To which she got angry and then I asked “did you even try to defend me” and she said “no, I didn’t get the chance because your dad thinks your I’m cheating and your in kahoots with me.” I then yelled “well then why the hell are you still married to him?” She says “because he’s my husband” and I yell “that is just bullshit.” [WARNING this is where really nasty bitchy me comes out and I am not proud of it but this has literally been bottled up for years.] I then scream “what hell kind of example are you setting for me? If I marry someone abusive or that treats me like shit IT’S YOUR FUCKING FAULT! because that’s the example you are setting.” She stormed off to the kitchen and I yell “I should just kill myself! and I hate my life!” and I stormed back up to my room and slammed the door.

Now you may be wondering if the story stops there. No, no it does not.

While I am angry and sitting on my bed sobbing in rage, my mom screams from the kitchen, and of course me being me, I already knew that she had either done something stupid or was about to. So I angrily go down to the kitchen where I see my mom with a death grip on a chef knife and a butter knife. I immediately grabbed the knife’s, which she fought me on, I got the knives out of her hands and threw them into the dishwasher and told her to go do something else. She refused and told me to leave her alone which of course I didn’t let her. She finished making the tuna salad with me standing in the kitchen watching her. I apologized for how I said what I said to her but I meant what I said to her. I also said “If you’re going to kill yourself, kill me first because I don’t want to be stuck with him.” I then stood in the kitchen until she left to go to work.

I have not spoken to my dad since Easter nor do I really intend to for the foreseeable future. I sick of all of his bullshit, insecurity, the world revolving around him. I haven’t spoken to my mom since thursday and I really don’t want to talk to her either.

The stones have been thrown and this time I am not going to help pick up the pieces. I am so over this bullshit family dynamic and I am so stupid for letting myself get hurt over an over in the process. Going to University is what is supposed to stress me out and be a challenge but instead I get stuck with not only University stress, I get my shitty homelife to go on top of it all. There is really no way for me to escape my parents until I am 100% not reliant on them for anything, which is going to take a while to happen, as my dad likes to sabotage my successes and my mom is so naive pay attention and take action.

I’m tired of fighting and I’m tired of being hurt by the people who are supposed to be my parents. It’s terrible that I dream of the day that I can cut myself off from them. They both think that I am going to be the child that takes care of them when they get old, but I’m not. They have two other children that can do that I’m out. The times when I needed them most they ignored me or blamed me. When I asked them to listen to me, they pushed me to the side. When I told them the truth, they were quick to believe the lies of other people. My story doesn’t matter to them. I am only sick to them when it is convenient. They only care about putting on a good face and lying to everyone about things going well. I am sick of that facade and I have ZERO shits to give anymore. It’s not worth my energy to pretend all is well.

Chronic Pain vs. Narcotics vs. My Parents

I understand that the US is in the middle of an opioid epidemic but why do we keep shaming people that need to use them to manage their pain. I do not use any narcotic medications on a regular basis only as needed and I reserve it for really bad pain days where I am in so much pain I can’t move. For the past 6 months I have been having severe pain in my right leg and more recently pain in my entire spine. I have instability in my cervical spine (neck) and my lumbar spine (low back). The vertebrae in my neck and back show degeneration and possible osteoarthritis. I also have some mildly bulging discs in my lumbar spine and a mild posterior displacement of my L5 vertebrae over my Sacrum. I have very limited motion in my thoracic spine due to very tight spinal muscles and this causes pain in my shoulder blades, ribs, and back. I also have a connective tissue disease that causes joint dislocations and a host of other problems. I am constantly in pain. I am really lucky to have friends that don’t make me feel bad for needing to take a narcotic medication and often will encourage me to do so when they see I am in a lot of pain. But the problem comes with my parents. When I had surgery in 2016 my mom didn’t get my Tylenol #3 prescription filled because she felt I didn’t need to take it. Luckily I was fine and was not in a lot of pain (as I had lost feeling in and around the surgical site due to most likely a nerve being removed or damaged during surgery). My port surgery was brutal and my mom had my Tylenol #3 prescription filled but kept pushing me to get off it as soon as possible. The last surgery I had was in 2018 and I woke up in so much pain from that surgery I was hyperventilating and couldn’t speak or open my eyes and I was sobbing. They prescribed me Hydrocodone which my parents filled but my mom told me multiple times that I needed to get off it as soon as possible. I understand and am completely aware that many people get addicted to pain medications after a surgery, but it’s not helpful when you need to take narcotic pain medications to have people who are taking care of you openly express their discontent with you taking the medication. I used to have really bad period cramps to the point I was missing school, puking, and crying on the floor I was in so much pain (we found out I had ovarian cysts and in 2018 found out I have endometriosis which why I was in so much pain). I had 3 ER trips due to period pain and each time was prescribed Tramadol to take home.  I used to take a lot of tylenol and motrin. For tylenol to even touch the pain I had to take 2,000-2,500mg and for motrin, I had to take 1,000 mg and I would have to cycle between those every 2 to 3 hours. That much medication is not healthy for your liver or kidneys. Naproxen worked for a little while but for me to even be able to go about my daily life on my period (because my parents were against birth control when I was under 18) Tramadol worked best. My dad will make comments about my medication use and state that he “doesn’t have to take all these medications even when he’s injured.” If I mention being in pain to either of my parents I always get the response “what do you want me to do about it?” It’s never: “have you taken anything for it?” “Do you want ice or heat?” “How bad is your pain?” or even “Do you want a hug?”

I saw my neurologist and he basically gave me the options of seeing a spinal surgeon, a pain management physician for steroid injections, or continuing with PT. I told my mom this and as soon as she heard pain management she immediately says “No, you don’t need any narcotics.” I literally said nothing about narcotics and that it would be for steroid injections around the irritated nerve in my back, but what she assumed was narcotics. I know not to even ask my dad about narcotics because he is just going to tell me all about how I just need to eat better and exercise and that he doesn’t need any medications.

It takes a lot for me to say that I am in a lot of pain. I was in excruciating pain, almost in tears, and instead of helping my body by taking a Tylenol #3, I instead waited 2 hours to see if the pain would get better on its own, I stretched, ate breakfast, attempted some homework, and then asked my friend what I should do when the pain got worse. Of course he told me to take the Tylenol #3, but I should not feel that insecure and guilty about treating my pain. Because of all of the restrictions the US has put into place around narcotic medications I have a very limited supply and access. I have had my doctors and nurses tell me it’s ok to ask if I need pain meds, especially during a flare, but I don’t because if my parents find out, I am shamed for using them.

This stigma and shame surrounding using narcotic medications for pain management is shameful and I honestly believe it does more harm than good. For people who have diagnosed chronic or acute conditions that cause severe pain, they should be able to take the medication that helps them best to continue on with their daily life. I should not feel guilty or have to hide from my parents when I need to take a narcotic medication. You can’t compare your pain to other people’s pain. It’s not healthy to be in high amounts of pain for days at a time. I shouldn’t have to refuse pain medications to satisfy my parents. Chronic Illness sucks as is and it sucks even more when you have parents and/or other people in your life that make you feel like shit for something that is out of your control. My dad likes to tell my mom and I that I am only in pain because I stay in bed so much (because he assumes that if I am in my room I am in my bed. more times than not I am laying or sitting on my floor). He never thinks, maybe she’s in bed because she doesn’t feel well or she is in a lot of pain. According to him my pain and illnesses arise because I am in bed and don’t exercise enough.

The worst part of all of this, is that I cannot voice any of this to my parents because it will be met with resentment and fall on deaf ears. Instead of listening they attack, and in this situation I am the one who suffers and they don’t care enough to realize that.

I Am A Burden

No matter how many times my friends and family tell me that I am not a burden to them, I can’t help but to call bullshit. You see I recognize that I have a lot of health problems and moderate to severe depression and anxiety, and I also recognize their change in body language, they look uncomfortable, or they attempt to change the topic. I almost lost all of my friends in high school because of being so depressed and my parents blamed me for my problems.

Let’s start with my parents. Apparently one of the main reasons they are staying together in their shitty marriage is because of me. I get there is/may be more to it but I should not be in the equation of why they should continue is a very emotionally abusive and just overall toxic relationship. And yes, I have told them that they should get a divorce and that I would be totally fine with it, but yet they still think that it’s going to affect me so greatly if they divorced. Another thing is all of my health and mental health. It’s a lot and it’s expensive and time consuming and I 100% understand all of that, but making me feel guilty for, needing insurance, needing money to pay copays of $30 to $100 to take care of my health (because I can’t get a better paying job and they don’t want me working while I’m in college), having to drive myself to my appointments (using their car), and the big one: them having to take off work or interrupting their free time to take me to an appointment or the Emergency Room. I don’t know if they think that I do all of those things just for shits and giggles. If they actually paid attention to me they would realize that I wait until the last bearable possible minute before deciding to go to the doctor or Emergency because I always get an irritated look from my mom because she knows that it’s going to cost money and take time out of her day if she has to be there and my dad pretty much just points the finger at me and is like “your doing this to yourself” and promptly ignoring the whole genetic disease and thinking he knows more than the doctors. I also have to pick and choose what doctors I see if my mom wants to be there for an appointment because if they are out of the hospital closest to us she basically cannot go because my dad thinks she is having an affair with someone (multiple people actually) at that hospital. The last time I needed to get IV fluids (we have to go to ER for it) instead of driving 5 minutes away from my dorm, we drove 30 minutes away to another hospital. And then the day after that my dad wants to say that my dehydration is caused by me not walking around after drinking fluids because if he just sits around after drinking fluids he gets dehydrated, even though it was actually because I had diarrhea and was so nauseous that I couldn’t eat or drink anything without almost vomiting. My dad also knows literally nothing about the body or how it works (he has not studied that at all and is nowhere near getting a degree in anything) and I’m the one who is pre-med and sees a shit ton of doctors. I hate playing the cancer card, but I am going to play it right now. Who the hell makes their child feel bad that they have cancer because it inconveniences them? If you guessed my parents, you’d be right. My oncologist wanted me to do 3 more months of chemotherapy to make sure the cancer was completely gone even though my scans were clean, but the reason I didn’t was because my mom had to take off work every other week because my dad wanted someone with me during my infusions (which took 5 to 8 hours) and I was the reason my mom almost lost her job. I didn’t even want to do chemo at all because of the type and lack of aggressiveness the cancer I had was, and when I wanted to quit after the first round I was told I wasn’t allowed to because of all of the sacrifices they were making for me to get treatment. I didn’t continue chemo because I was made to feel like I was such a burden for something that I didn’t get a say in. Right now I am a burden for my parents because I need a car so I can get a better paying job to help further my opportunities down my chosen career path and also so I can stop having to schedule my appointments at the most inconvenient times or having to miss my class because they need the car to get to work. My mom got really angry at me and said “fine I’ll go back to corporate America so I can pay for you to get a car” and angrily walked off. I told my dad that I can’t even schedule a job interview, let alone get a job, because I have to plan it around their work schedules and instead of encouraging me to try to anyway and we can figure something out, he just said “that’s right” and stopped talking to me. My dad has an ego to big to ask anyone for help and honestly should be in therapy to deal with his own problems but I digress. Another important thing about my dad is that when I was younger, instead of telling me that the whatever I did was disrespectful, rude, inconsiderate, etc., he always would say to me YOU are a disrespectful child, YOU are ungrateful, YOU are inconsiderate, or his favorite one YOU need an attitude adjustment. Do you see how this makes me feel like the ultimate burden? If not, here’s another childhood memory. My parents never listened to me as a child and so I would get angry but I couldn’t say anything to them for fear of being called a “disrespectful child who needs an attitude adjustment” I would write notes and stick them on my door. In this particular note, I said that I wanted to live with my best friend at the time and her parents to adopt me. Well my dad’s response was and I quote “What makes you think that they would want you?” Who the fuck says this to their child? Still not enough to see why I feel like a burden? Here’s another story. I used to get hurt A LOT and would complain about being in pain often. I had hurt my knee and my dad took me to the orthopedic surgeon. We were in the exam room and before the doctor came in my dad said to me, and I quote again, “You better hope they find something wrong.” Both of my parents believed that there was nothing wrong with me and I was faking all of my injuries to get attention so it was a massive inconvenience for them to take off work to take me to the doctor and they made sure that I knew it. I am a burden to my parents. My mom has told me multiple times that I am not a burden (my dad has never told me that) but her words mean nothing compared to their actions.

Now for my friends. Preface: I absolutely love my friends and each of us have our own mental health problems of varying severities and they are not responsible in any way shape or form for my physical or mental health. I am a burden to my friends. I have a really shitty homelife and most of them know this. All of them know that my body sucks and causes me great pain and that I have depression and anxiety. I am a burden to my friends when shit hits the fan in my life. The time in high school when I almost lost all of my friends, I was super depressed and stressed and I was going to kill myself. They freaked out (one of them called the police and that was a terrible experience), I spent a week in a psych unit, and when I started coming back to school none of them talked to me. One of them told me I should’ve just killed myself. I understood why they were mad, upset, sad, scared, frustrated, etc. with me and that things were going to be different. But the worst part was everyone was so scared to say anything because they thought if they said the wrong thing, I might try to kill myself. I knew this and it made me angry because I knew that I was a burden to them. To this day I try not to talk about the shit that is my personal life very much because I don’t want to burden them. I don’t ask them for help because I don’t want to be a burden. I struggle with making friends, not only because of anxiety, but because I’m terrified of being a burden.

When you’ve spent the majority of your life feeling/knowing you are a burden to the people around you, you can’t help but to hate yourself and feel like the world would be a better place without you in it. I don’t remember ever feeling like people would miss me if I died, I always felt like they would feel relieved. I used to be able to picture me being in a successful career doing something I love, but now the only thing I picture is me being dead. What do I have to live for? The people who are supposed support me, care for me, teach me, and be parents to me,constantly make me feel like I am a burden and massive inconvenience to them, when they were the ones who decided to have kids. *Side note: my other siblings are not treated this way granted one is in prison and the other two live on their own* My parents come to me and ask me for money (they say they will pay me back) and get mad when I ask for it back. You might ask “why don’t you just say no when they ask you for money?” because they make me feel bad if I don’t. They throw it in my face that they pay for the car, gas, a place for me to live, food, medical insurance, and car insurance, and guilt me into it.

I honestly hate myself and am just a burden to everyone around me. My life is a mess and full of stress and shit has hit the fan and splattered around the room. And I’m just left pondering the question: “Is it worth it to keep living?”

My Daily Struggles

Anger: There are so many things that make me angry but there are a few constants that have continued on for a while. One is the fact that our living room is still filled with the stuff from our storage unit because my dad finds other things to do (mostly watch T.V. and complain about tiredness) instead of taking even half an hour to go through one box. My mom currently works 2 jobs which takes up anywhere from 8 and a half hours of the day to 12 hours a day (sometimes more than that). Her hours are 6 am to 9 am and then 4:30 pm to 12:30 am Monday through Friday (every other weekend is different but she has good reason to be tired). It’s so frustrating because she feels that it’s on her to go through everything in the living room because my dad won’t. You might ask why I am not going through boxes since I am home all day, well it’s because 95% of the stuff is my parents, 1% are things from the kitchen, 1% was stuff from my room, 1% my brothers things, 1% books, and 1% is miscellaneous things that came from our junk drawer. I went through my stuff, the miscellaneous things, my brothers things, and some of the books 3 weeks after we moved everything into our living room. I also help my mom when she is going through things and just ask her what needs to be kept, shredded, and thrown away as we go through boxes. I can’t go through their stuff alone because I don’t want to have to make the decision of what stays or goes for things that aren’t mine and my mom sets asides things that are my dad’s for him to go through. It’s frustrating that the only open space for me to go to other than my room, is the kitchen, the dinning room, and their bedroom (which is where they moved the T.V. to). This has gone on for close to 6 months now and there is work that needs to be done on our apartment that has to be put off because of all of the stuff. Our complex is replacing windows on the all apartments and they are doing it in sections and the manager called because she wanted us to be in the first group of apartments to get windows because she knows that we have problems with 3 windows and all of the windows leak air. Well we aren’t going to be getting that done for a while because there are boxes and our couch blocking access to 2 windows. The next thing that has been making me really upset is the fact that there has been ZERO progress with moving my nephew out of my room. He originally was only supposed to be staying with us for 1 year; well he’s been here for going on 4 years. He’s 12 and I’m going to be 19 in just over a month, it’s not okay. If I was off at University I would not have as much of a problem with him being here still, but I’m still home. Another thing that makes me angry is my oldest sister. She causes and attracts drama and negativity. Everything has to be about her.She has cancer but all she does is complain about how sick she is feeling or how much pain she is in and how she isn’t getting better. Part of the reason she isn’t “getting better” is because she does not make the effort to go to every single one of her treatments. It’s hard to tell with her what is really true because she is manipulative and makes her illnesses worse than they actually are. And then my dad is the one to jump to her defense and be tell me that I need to be nice to her and be understanding, when I get pissed off that all she does when we talk is complain about how “sick she is.” Lastly, the fact that my dad expects me to write letters to my brother who is currently in prison. I am not sure of what he did to get there but he has been in and out of jail for the past 3 years. My dad feels that I should write letters to him simply because I am his sister. I have nothing to say to him. The last memory I have of him is him breaking 3 windows and yelling.

Eating: I have been consciously restricting my eating and blaming it entirely on the chemo that I had. The chemo has reduced my appetite, but I still know that I need to eat and I just don’t. I need control over something right now and that’s what I eat, the amount I exercise, and what I drink.

Pain: I am still having chronic joint pain (just got a new doctor about a month ago so we will see if she tries to figure out why) and I still have the bilateral tibia pain. My doctor decided that we would treat it like shin splints and if the pain does not go away or improve in a few weeks then we would do further imaging studies. So she has sent me to physical therapy for 3 weeks to see if it will help (so far it hasn’t) and the Physical Therapy Student I saw for 3 days didn’t feel that it is shin splints. So I am just going through it and just hoping that it gets better so I will stop having pain in my shins or that if it doesn’t get better that something will show up in the scans.

Anxiety: Because being at home is boring and I am not doing anymore chemo treatments or radiation I have been trying to get a job. I had an interview for one and didn’t get it because I will be leaving for University in less than a year and there were applicants that were planning to stay there longer. Another job didn’t want to hire me because my mom worked there and she didn’t want us working together (even though we would be working different shifts). The other ones I am waiting to hear back from I have called to follow up but did not receive a phone call back even though I left a message. Applying for jobs, waiting to hear back, follow up calls, and interviewing, all give me really bad anxiety so it’s a conflicting thing to do. It took me 2 weeks to call my oncologist to tell him I was not going to do the extra rounds of chemo because I was so anxious.

Thankful

Thanksgiving has always been one of my favorite holidays along with Christmas and New Years. It’s a great reminder for all of the things to be thankful for.

This year I am thankful for:

Going 2 years without self harming

No psychiatric hospitalizations for 2 years

My adorable baby cousin (and her 2 other siblings)

My therapist

My parents (even though they piss me off)

My extended family

My 2 very different friend groups (that I don’t dare to mix together)

TFCBT, even though it makes me VERY uncomfortable

My church and the people that I have met through church

Graduating from High School

Being accepted into University (even though I had to defer everything because of cancer)

Having this blog

 

2 years ago, the week before thanksgiving, I spent it in a psychiatric hospital. I was so angry with the world and felt so ignored by my parents. I was set on taking my life. If it weren’t for my friend who called the police, I would probably be dead. Looking at all of the things I would have missed out on, makes me want to cry. That following year I got a new therapist and we have made so much progress. I did make a lot of progress with my other therapist and we had just started TFCBT and before that I had never gave any details or really even talked about my trauma with any of my therapists. I also never texted any of my therapists before her. With my current therapist we have made progress on being more specific of details that happened in my trauma (which makes me really uncomfortable and I hate it) but it is slowly helping. For a lot of people Thanksgiving is just a time to be thankful and spend time with family, but for me it’s a reminder that I have friends and family that want/need me around and that there is so much more for me to experience.

So this year and every year my one big thing I am thankful for is my life.

I would love to hear what you are thankful for this year.

Cancer Free! (Well Sort of)

So two weeks ago I was told by my oncologist that I was NED (No Evidence of Disease) and technically in remission. So what this means is that my scan showed that my body had a full response to the chemotherapy. As I talked about in my last post I talked about how I had to make a decision on if I was going to do 3 more cycles (basically 3 months) more of chemo or if I was going to take my chances and see if I stay in remission. Well I made a a decision and I decided that I am done with chemo.

It was not an easy decision to come to at all and I’m not sure I am entirely okay with my decision but I am not sure my body can take anymore right now. Part of the reason I decided against doing more treatments was because the extra rounds of chemo were simply protocol measures. If I would have been told that I hadn’t had a full response to the first 3 cycles I would have gone ahead with the 3 more cycles. Also, because I got my chemo through my port (an artificial vein that goes into my heart to protect my real veins) every time I had to get it flushed and locked with heparinized saline, which has a taste that makes me want to puke even when I think about it. Unfortunately, my oncologist wants me to keep my port until my follow up with him in 3 months, if I can tolerate it, and I am supposed to have my port flushed every 4 weeks when it is not in use. Another reason is for the amount of weight I have lost/am losing. Since the start of my treatment, I have lost about 20 pounds and still counting. I still have not regained my appetite so often I forget to eat and from that I become hypoglycemic (low blood sugar) and that makes me really dizzy and almost pass out.

Right now it is just a waiting game to see what happens. There’s a possibility that I will stay in remission or I will relapse (potentially more aggressively) or I will get another cancer because of the damage the chemo did. We just don’t know. We didn’t know if the extra cycles of chemo would better my chance of staying in remission because the form of Hodgkin’s Lymphoma I had is so rare and hard to study. No matter what choice I made I would still have to get yearly scans (which are expensive), have follow ups with my oncologist (also really expensive), and do self checks on lymph nodes to make sure they aren’t enlarged (which is scary because if I get a cold and they are enlarged they are going to get scans just to be sure). I am going to keep my port in for as much of the 3 month period as I can (because having it put in was the most painful surgery I’ve had and I don’t want to go through it again if it comes back in 3 months).

It’s scary to think that the cancer I had may come back, especially if it comes back more aggressively. It’s also scary to think about the possibility of the more dangerous side effects that could onset later on in my life, there’s one that could cause damage to my heart muscle which would affect my hearts ability to pump blood throughout my body. But, I am going to try my best to remain optimistic about staying in remission and just take it one day and one step at a time.

I Hate Being an Adult (sometimes)

I have not been this stressed out since the beginning of Junior year in high school. One thing that tends to happen when I get really stressed is I become suicidal and anxious, which really clouds my judgement and impairs my decision making greatly. Last week I went to Emergency, met with a Radiation Oncologist, and met with my Oncologist. As I talked about in my last post Emergency was basically a waste of time and energy which was just frustrating. Wednesday I saw a Radiation Oncologist and she told me that she could not recommend radiation due to the likely outcomes of infertility and secondary cancers. She was very honest about it and had thoroughly researched the cancer and reached out to other top doctors in the field who did not feel radiation was a good option. I am fine with her decision. Thursday I saw my Oncologist and we discussed what the radiation oncologist said. He was not entirely thrilled with it because that changes what he originally laid out as my treatment plan. Originally it was 3 cycles (3 months) of chemo and then two and a half weeks of radiation. Now that radiation is not really an option, he wants to follow the standard protocol for Hodgkin’s Lymphoma which consists of 6 cycles (6 months) of chemo. I can’t even stand the thought of doing even one more cycle of chemo. I openly voiced not wanting to do anymore chemo because I thought I was done. He then tried to compromise saying that we would only do 2 more cycles and that he would like to start it the following week (so this week). I guess he could tell by the look on my face I was not down for making that decision. So he gave me the weekend to think about it and then told me to call him. Well I haven’t made a decision…It’s stressing me out and making me want to hide from all adult decision making. I’m not going to lie but I have been slightly suicidal. I’m not planning on doing anything but the thought has crossed my mind.

I have made a list of the pros and cons of each option and the options of continuing or stopping chemo, are both equally as bad. My parents aren’t being much help in making this decision because they want to pull the “you’re an adult” crap and the “pray about it” speech. Here’s the problem, I realize I am an adult and I don’t feel that I am going to make a rational decision so I am doing what I feel the responsible adult would do and ask for help.. Then the praying about it thing really isn’t working for me because I have and I don’t have an answer. I have silence and that’s about it. So I am probably not going to call my Oncologist today and I might just go M.I.A. from that and hide from being an adult.

Pain Unsolved

Today, at the recommendation of a nurse, I was told that I needed to get the pain in my lower legs evaluated ASAP. So my mom took me to Emergency where I spent a total of 5 hours today. My oncologist wanted to be kept in the loop of what was going on so after the doctor came in and evaluated me (and made the decision that an X-Ray was unneeded and it was just a side effect from the chemotherapy) she called my oncologist to see what he wanted her to do. He wanted to rule out a DVT (Deep Vein Thrombosis *blood clot*) so they had me get an ultrasound of both of my legs. The doctor came back and just said that this is Neuropathy and that there’s nothing she could do.

Once she heard that I had cancer, that’s all she focused on. When I tried to tell her that something is wrong because I’m here in Emergency for pain! I have only gone to Emergency one other time in the past 9 years for pain. I am not one to cry when I am in pain unless it is really bad. My pain tolerance has increased over my life because I am in constant pain and for the most part the pain that I experience daily I have just gotten used to. So for me to go to Emergency for pain (also refusing to get narcotics while was there) says something. If she would have bothered to ask normal triage questions such as “When was your last menstrual cycle?” She would’ve known that I have not had my period for the past 3 months. One thing that often happens with Amenorrhea (the absence of menstruation) is a depletion of calcium in the bones making them weaker. There is a possibility that I have stress fractures in my tibia and fibula. But she was too focused on the side effects of the chemotherapy that could directly cause pain and over looked Amenorrhea.

My mom kept telling me to stop diagnosing myself, but the only reason I do that is because I know too much about different diseases and side effects of medications because I like to learn new things and challenge myself. I don’t want to be a doctor just because they get to wear a lab coat and scrubs, I want to be a doctor because I like medicine and I like problem solving. So of course I am going to try to figure out what is wrong with me because I am sick of doctors overlooking things because they zone in on what they want it to be and will only do things that prove what they want to prove. For her to walk in, not even bother doing a full exam or even talking to me, ruling needing an X-Ray within 2 minutes of meeting me, is not a good doctor. Now I have to wait 3 days to see my oncologist, only to have him most likely order more tests, and then wait for the results of those. But on the bright side he actually listens to me and my concerns and knows that I am not one to complain about pain. My mom called him and told him about what the doctor diagnosis was and he does feel that it is just Neuropathy. Also, I have to say that nurses are for sure my favorite people to interact with. The nurse that I had tonight stopped in and talked with me after the doctor left. I was really frustrated (when I get frustrated I cry) and she came in and listened to my concerns and told me that she doesn’t agree with the doctor’s diagnosis and felt that it was something else. She also explained that because they ruled out a DVT so I didn’t have anything life threatening, my insurance wouldn’t pay for any other procedures through Emergency. If the doctor would have said that there was a possibility that the pain is not caused by neuropathy and that she was not going to run anymore test because my insurance wouldn’t pay for it, then I know that I would not have been as upset. Yeah that would’ve sucked to hear, but not as much as a doctor not even considering any other options and essentially just not caring, really sucks.

So a big thank you to nurses who clean up doctor’s messes, put up with the anger from patients and their families, doing the “dirty” work, and working long hours even when instead of thank you they get an ‘f-you.’ Also a big thank you to the doctors that listen to their patients concerns and treat their patients the way that they would want a doctor to treat the person they care about most. To the doctors that dismiss or don’t care about patient care, thank you for teaching me to get a second opinion and not to stop looking for a doctor that is going to care and try their best to figure out what’s wrong with me.

*Sorry to my therapist for the mini heart attack that she is going to have when she gets to work tomorrow and sees that I was in ER…oops*

Update

So I have officially finished Chemotherapy!!!!!! I still feel like crap but on the bright side it’s over. Now I am just waiting to get another scan and then I will most likely be doing radiation.

Next thing, I am yet again having problems with my computer. There is something wrong with the battery and I do not currently have $140 to fix it as I have not worked in the past 3 months. So I have to use my moms laptop which I don’t have to use all of the time so I will do my best to post.

I shaved all of my hair off and I feel amazing! I did not really lose my hair from the chemo it just thinned out and became really dry and it took a lot of energy (that I don’t have) to do my hair everyday. I am really happy with my decision and I will be getting a wig because my mom thinks that I will have days where I don’t want to be bald.

Things have been pretty rough for me emotionally in the past two weeks, but I am trying to get through it and I will probably make another post detailing what has been going on.