When a loner feels lonely…

I have always perferred to be alone. Even as a kid even though I had friends I perferred most of the time to play alone in my room. As much as I enjoy spending time with friends, and maybe even one or two of my family members I just enjoy my own company more.

The thing I look most forward to on weekends is not being around people. So, why have I felt so lonely since I started cancer treatment? There is the fact I’m not around people at all when I am home between hospital visits. Most of the time I have to so I don’t catch someones germs. I have always said I could never work from home no matter how much I would love that because I would never see people again. I need that soical interaction to stay sane and keep up my barley there soical skills.

I also think it is because I feel vunerable. I need the support of other people. I need my family and work family. I need to gossip with my girls. I had dinner with some friends from work and I had the best time catching up on the gossip. We had so fun just chatting and I felt so much better then I did earlier in the day. I almost cancelled because I was feeling tired and achy again. But when I got there and spent time with my friends I forgot that I felt like crap.

I went into the office last week twice. The first to visit the next to pick up paperwork. My face hurt from smilling so much. In the three years of working there I’m sure they have never seen me smiling so much. It was just so nice to be out of the house and to talk to someone that wasn’t my dogs.

I even gladly hung out all day with my oldest sister. That is normally something we all try to avoid. But I was so desperate for company I watched her unpack boxes and put up shelf paper.

Cancer has turned me into a social butterfly? No. I’m still akward and uncomfortable around other human beings, but I just don’t want to be alone all the time right now. Maybe it’s just me learning to lean on others for support. I’m sure as soon as all of this is over I will go back to making excuses to not hang out with people again.

Being in the hospital is the place and time I feel the most lonely. I see nurses and nursing assistants all day, but are they really counted as company? We talk and get to know each other. They are very caring. I have made “friends” with them. My Dad tries to visit everyday. My Mom does her best, but has a strangr work schedule. My sisters each came once. The first round of chemo two coworkers came by. My friend Sam who I have known for almost a 11 years came by each time. She even brought hers kids by to visit me at home. Her husband who I’ve known just as long came too. Even though there was a 4 year old and a newborn there it felt like we were in our early 20’s again. The three of us hanging out and talking. The only difference was they weren’t drunk and I wasn’t laughing my ass off at them.

People keep saying they want to visit me in the hospital and I will tell to come on by. To message me and I will give them the room number. It is mostly a thing you say I think, because they never do. It is also hard for people with work and kids. I get that they have a life and sometimes I think would I visit them. Maybe if we went as a group. I don’t like driving.

There have been times in my life I would find myself thinking I wished I had someone to hang out with when I was home alone. Sometimes I would even put in the effort to find someone to hang out with. Mostly my Mom and sister because all my friends are married with kids. But for the first time I’m really lonely. My friend who set up the dinner said she was surprised when I just came out and said it. She asked if there was anything she could do for me. I said spend time with I’m lonely. My boss said to call her when I know I can safely go out to lunch. I jumped at the chance.

Having social anxiety makes you a loner, but when things get really tough even a loner needs to have people around them. I never even realized how many friends I had until I stopped seeing them everyday. When I left work the other day I was thinking to myself how can such anti-social person have so many people that care about her. How did I not know that I made these friends? I got so comfortable there after 3 years that I was just being me and they liked that. Some people broke out in tears when they found out. They follow my Facebook updates religiously.

I guess I’m not really alone, but it sure does feel that way.

How having cancer has changed me…

A lot of people have asked if having cancer has changed me in anyway. Even my Dad asked . Some people have even told me they have seen a change in me. I think it has and it is common I’m sure. I think some people see it as a near death experince and look at their life or themselves differently. For me it wasn’t about the chance I might die. For me it was a wake up call telling me I’m not doing what I wanted to do with my life.

All my life, even as a small child I have wanted to help people. There were times when I didn’t know how and went with a opportunity when it came along. There were people that would come into my life that I felt needed me and my help. I will be honest helping people is hard. Mostly emotionally. I’m a sensitive person and also have my own issues.

After getting hurt a lot from helping people and things in my own personal life I started to close myself off. I don’t think I noticed it at first. It started with me saying I’m done helping people who won’t help themselves. There was a guy I worked with that had depression and was away from his family. I also had a crush on him. After everything that went down with him and a huge fight with my best friend I was 100% done.

I think it was three years ago I told my therapist/counsler that I was starting to notice I wasn’t feeling empathy or even sympathy anymore. People at work would tell me about this horrible stuff in their lives and I would know how I should feel, but I didn’t feel it. In the past I would cry along with them and feel their pain. Now nothing. I had been seeing counsler for a couple of years at this point and had shared all the pain I had gone through in my life. She told me I had put up walls to keep all the pain out and that included feeling pain for other people.

Not only was I not helping people anymore I couldn’t even feel bad for them. What had become of me. She also told me that is why I’m not in a realtionship and wouldn’t be able to be in one until I fixed it. At the time I was on the fence about if I wanted to fix that. If I don’t get close to people I will be hurt a lot less.

Not to long before I was diagnosed with cancer I started seeing someone new to prescribe my Lithium and other meds. I was telling her my history. Telling her about my life. We went over our time because of it. At the end she looked at me and asked if I ever thought about writing a book about my experinces to help other people going through it or who have loved ones who are. I told her I had tried, but can’t organize my thoughts well. She is the one who suggested this blog.

I started this blog as a first step into getting back to my calling and true love. Helping people. Soon after I found out I had cancer. I truly believe this is a sign I’m getting back on track with what God wants. People keep asking me if I was afraid I was going to die. No, because God would not have put me on this path if he was going to take my life. He put me in a place where I am needed.

The talks I have had with a few people here at the hospital I talked about in one of my other blogs firmly cemented this belief in my mind. A friend I have known since I was 15 said to me a couple of weeks ago that I seem more open. I told him that I’m not putting up walls anymore. I’m going to let people in again. It’s time to stop hiding. There are people out there that need help and I want to try to help in any way I can. I don’t want to hide from pain I want to help people with theirs.

Having cancer has put me back on my path and no matter what horrible things my body has been subjected to I believe it was worth it. I have learned so much about what people in the USA who have illnesses have to go through. I already knew about how people with mental illness are treated. Now I know it’s not just us. Anyone with any type of illness in this country is treated so unfairly. People are sick and could die and the laws in this country don’t help them. The laws help to save big companies money. Charities do the best they can to help, but they are limited.

This is a stessful time for so many reasons. Sometimes it helps to talk especially if the person has gone through it too. I have even picked up a few things that might help. My Dad works in the HR department at the company he works for, so he has helped me a lot with FMLA, short term disability, and insurance issues. I can pass that along to people who aren’t lucky enough to know someone like that. There are a lot of things about the hospital and treatment I’ve learned.

Cancer has given me new tools to add the the ones I already have to help. Everything I have gone through in the last few months sucks, but I can’t bring myself to wish it never happened.

Being Bipolar with Cancer pt 2…

Sorry this had to be a part two. I had a friend coming over.

A week after the surgery I checked back into the hospital for my first round of chemo. It wasn’t the normal hospital admit I was use to, but we rolled with it. The nurse was nice and went over everything with us. Dr. K wasn’t the doctor I saw when in the hospital. It was Dr. D this time. It’s the oncologist on call at the time. Dr. D came in and went over what I was getting and how we were going to do it. She asked if I had questions. No, the one thing I was most concerned about was side effects. You hear all the time about people having all these horrible side effects from chemo. I am the biggest wimp when it comes to throwing up. She told me with this type of chemo most people don’t have a lot of side effects.

Also now that doctors know all the bad side effects chemo has on people they know what could happen. So they give you what they call pre meds. I can see the good in this. I really can, but you just made take an entire pharmacy for side effects I MIGHT have. One of the ones I had to stand up for myself and refuse to take was stool softener. I won’t go into detail. But I wanted to bring up to tell you this. They give it to us because chemo might cause constipation or diarrhea. What if it’s diarrhea and they are giving you stool softeners?

The chemo wasn’t suppose to start until the next day. They give fluids before you start just in case you don’t eat and drink enough. Also an issue that came up later we had to fix. Anyway, the night before the chemo was to start and everything calmed down I was alone in my room. No family. No nurses. Just me. I think it was 10 pm. I picked up the cancer info book they gave me and started to look through it. When I was done I sat it on my tray table and cried. I would like to say this is when it hit me that all this was real, but no. I was crying because I was scared the doctor was wrong and I would throw up. I cried for a few minutes and posted my fears on Facebook. Then I turned out the light and tried to sleep. Anyone who has spent a night in a hospital knows they don’t let you sleep.

For the most part I was a model patient this time. I even made friends with the housekeeping staff. I am mobile and can use the real bathroom with out help. Really I don’t need the nurses for much. I only call them when the alarm on my IV goes off. My chemo meds are in an IV bag. This kind gets a lot of air bubbles. The nurse has to come and flick the line to get them out. It’s really annoying.

There was one thing I was and still am a butt about. You see they like you to get up and move around so you don’t get blood clots or fluid in your lungs. I get up and move around. I promise I do. But they want me to walk the halls. No. I won’t do that. I know this is because of my bipolar disorder. I was very clear with them that I knew that it was. I am a private person. I freak out if people touch my stuff or look through it. I don’t have anything bad they could find, but I get panicked like I do. I don’t have any problem talking to people about what I am going through, but walking down that hall makes me feel so exposed. I feel like my journey is mine and mine alone when I am there. I don’t want to share it with anyone else. As soon as they bring it up my hackles rise and I get ready for a fight. I will not do it. I think I feel more vulnerable at the hospital.

One thing that confuses me is how lonely I feel. Normally when I am not at work I stay home alone. I rarely socialize anymore. When people would ask me what I am doing on the weekend I am happy to say stay at home alone. But since all of this started I feel really lonely. Maybe because before at least I was working and there for around people. Now it’s either all day at home alone or all day at the hospital alone. I have a nurse coming in to do things like check blood return, give me pills, draw labs, and change out my chemo bags. I also have a nurses aid to check my vitals. But that is not the same. My Dad tries to visit as much as he can, but I feel bad because he really is burning the candle at both ends. He works all day and then comes to visit me. He has MS and it is just too much for him. My Mom comes a couple of times when I am there. She bring me stuff if I ask her.

I don’t know if she doesn’t visit much because her work or because this is just so hard for her. I am the baby of the family. When I told my Mom I had cancer she burst into tears. My Mom isn’t an emotional person. She has depression and keeps things bottled up. Her feelings are not for show. When her parents died I don’t remember her crying. I’m her baby.

My sisters were sick the first time I was in there so they didn’t come, but they dropped by the second time. A few friends dropped in the first time. My friend Sam who I have known for almost 11 years came both times. She has been great. Most days I sit by myself trying to keep from being bored. Being lonely is depressing, but still not actual depression.

They were worried about how the chemo would interact with my bipolar meds, but so far I haven’t gotten depressed or manic. I feel like people are watching me waiting for my breakdown. I’m not going to lie I have gotten sad. Having cancer is sad. There have been some tears. Like the day it hit me that this was all real. I had really had cancer. It’s not just some weird dream.

That would be not to long before my second round of chemo. That was when my hair started to fall out. At first it was a little bit. I made a few jokes about it on Facebook. Then it was big handfuls. Brushes full. Then one day in the shower I felt I tickle on my back. It came out a lot in the shower, but this day I reached around and felt all the wet hair sticking to me. I was covered in hair. I had really thick hair to start with, so there was enough hair to make someone else a wig. I blow dried my hair after and when I was done I turned around and looked at my bathroom everything was covered in hair. I looked at how thin my hair now was and I broke down and cried. That is when it hit me that this was really happening to me.

So, I cried and then I called my Dad to tell him it was time to shave it. Hair was getting everywhere and it was getting on my nerves. My Dad came and picked me up. We went to a place that he found that sold wigs for cancers patients. He paid for it. It looks very real. Then we went to his house and he shaved my head. I picked myself up and brushed that hair off. Alright now that this is out of the way it is time to check back into the hospital and I had stuff to do.

People keep telling me they are inspired by how well I’m handling it. In my mind, a bipolar mind  how else am I suppose to handle it. Am I suppose to wallow in self pity? Am I suppose to get all depressed? Fuck that! I am a fighter. I always have been. If I can fight my own mind every day I can fight cancer. I having been fighting to survive my whole life. This time it’s my body not my mind.

Being bipolar has prepared for this. It had taught me to be strong. It has taught to fight for my life. It has taught me to pick myself up and keep going. ‘My story isn’t over yet’ has a new meaning. I’m not going down with out a fight.

I don’t know if you believe in God, but I do. I’m not here to preach. I am here to share my story. I believe God has a purpose for me. He always has. It is to help people. There has been a lot of ways I have done this in my life. I got hurt a lot trying to help people. So I stopped and put up emotional walls. I had just started trying again with this blog when I got diagnosed with cancer. I believe this is God’s purpose for me. Not only can I help people with mental illness, now I can people with cancer. Sharing my own personal experience. Talking to someone who has never been through it is helpful, but talking to someone who has gone through it is better. To try to explain how you feel to someone who has never felt it. I always think about the time I tried to explain to my psychologist what a manic episode felt like and compare it to the time I talked someone bipolar about what it felt like. Big difference! There have already been a few people I feel like I have been a able to help in at least a small way.

One of my nurses was telling me her daughter is bipolar. She was telling something her daughter was trying to explain to her about how she feels. The nurse said her daughter had too many voice talking to her at once. I said do you mean thoughts or voices. Big difference it what this poor girl has. It did turn out she meant racing thoughts. I explained that when you are manic that sometimes you have so many different thoughts at one time you can’t pick one train of thought. They are all going so fast and you can’t make them stop. I asked if her daughter ever talked so fast she thought she might pass out. She said all the time when she was a teenager. I told her she was manic. We talk so fast because we are trying to talk as fast as these thoughts are coming. We can’t keep up with them, but we feel we have to try. We talked about a few other things and she walked away understanding her daughter better. That is what I want to do with my life. That is my purpose.

I am a warrior. I am a survivor. If I can I’m not letting bipolar disorder take me down, then I’m sure not letting cancer.

1st Bald  2nd W/ the wig

 

Life a bitch…

So, it has been a long time since I posted. The last post I told you about having to go to the hospital and finding out I had a heart problem. The lining of my heart was collecting too much fluid. It’s been a rough few months and I want to share it with you.

I have been feeling exhausted for a while now. I mean I barely made it through work and then slept as soon as I got home tired. I slept all weekend as well. I started coughing in August and by October it had not stopped. On October 22nd (2 days after my birthday) I coughed up blood. I went to the doctor and he sent me for a chest X-ray. In the X-ray it looked like my heart was enlarged. So, he sent for an echocardiogram.

I went for my echo and the tech had me wait while he showed the doctor. I thought that he was just being nice. It turns out he has been doing this for 25 years and saw something the doctor needed to see right away. The cardiologist called my doctor and they told the tech to tell me to go to the ER right away. As you can imagine they freaked me the Hell out. I called my boss and my Dad on the way to the ER.

After the ER doctors got my results from the test a cardiologist came down and told me my heart looked enlarged because there was a build up of fluid in the sack around my heart. It was a lot of fluid and they were very concerned it would put pressure on my heart. If they didn’t remove it then it could stop my heart.

I got checked in. They told me I had to have a procedure to remove the fluid. There are two ways of doing that depending on your condition. Most common way from the outside of your body put a needle through to the sack and drain it. Then a little more invasive cut you open and put the needle through the sack. To know which one they needed to do they sent me for a CT scan.

After the CT scan I got a visit from three different specialist. First my cardiologist who got to give me the news. Then a pulmonary specialist. Then a thoracic surgeon. When they looked at my CT scan they saw a mass in the chambers of my lungs. The cardiologist said he only knows heart stuff. The pulmonologist said that is might be that the lymph nodes are infected or enflamed. The thoracic surgeon asked me they same questions they did, but two or three times like my answer would change. He talked to me about different types of autoimmune diseases. Then he brought up cancer and told me not to worry they partner with a hospital that is great with cancer treatments. He was they only one to bring up cancer. They all agreed I need a biopsy. So after draining my heart sack the hard painful way I got to go home for a few days before my biopsy. By the way they drained two Coke cans worth of fluid from that sack. I saw it when I woke up in the OR. It looked like a pitcher of beer.

To do this biopsy the put me under and put a special tool down my throat. It had a cutting tool and camera. They took just a little piece of it. The doctor told me it would take a week for the results. They all were hoping by testing the fluid and this biopsy they would find out why my pericardial sack was building up so much fluid.

It didn’t take a week before one important test came back. In fact it was the next day when the doctor called to tell me it was Lymphoma. After that everything just felt like I was on a speeding train. I had no control and it felt like no say in what was happening. I got a call telling me I had an appointment at another hospital with an oncologist.

Then I got a call that I also had an appointment with another doctor also at the cancer center the same day, but an hour before. Then I got a call saying early that same day I had a PET scan scheduled. My Dad looked up the other doctor after I told him they didn’t tell why I was seeing him or what his specialty was. Turns out he is a thoracic surgeon that specializes in doing lung biopsies. His name is Dr. W for this.

Dr. W told me I was going to get a Port put in. You see I have horrible veins. My stay at the first hospital was torture. My arms were covered in bruises. A port is something they put in your chest under the skin. It is connected to veins in your body. For me my juggler vein. They can just poke a needle in the port through your skin. Then they can either get blood or medicine can go through it. So, it’s a less painful IV that is always with you.  He  told me the oncologist I had not seen yet night want another biopsy that was more invasive. He would cut into my side and go up into my chest. Dr. W also informed me I might also get a bone marrow biopsy.

Next was the oncologist Dr. K. She told me I have Non-Hodgkin’s Lymphoma. There are different kinds and to know which treatment to give me they need to know which one it is. So, I did get a bone marrow biopsy that day. Fun surprise! Also a lesson this whole thing has taught me is when a doctor says it will only be a little pressure they mean excruciating pain. I ended up also getting the other biopsy as well. All the bone marrow told us was it had not spread to the bone marrow. With the big biopsy they will be able to break it down and get it’s DNA. Which is what Dr. K was trying to get. The DNA of the cancer will tell them what type in is. Also when they were doing the big biopsy Dr. W had to cut open the pericardial sack to empty the fluid again because he couldn’t get to the mass. When he did he found more tiny tumors in the pericardial sack. Yeah more cancer!

Primary mediastinal large B-cell lymphoma is what I have.Or PMBCL for short. Stage 1 if it wasn’t for the tumors in my pericardial. That makes it stage 4. PMBCL is a rare type of non-Hodgkin lymphoma (NHL). It mainly effects young adults and is more common in women. If caught early chemo will knock it right out Dr. K told me. If it’s not caught early there is nothing that can be done. But yeah they caught mine early!

On January 16th I will be going back into the hospital for my third round of chemo. I will be getting six rounds of chemo. I have to be in the hospital for five days each time. My next blog will be about the emotional side of all of this. ‘Being Bipolar with cancer.’