This is the fourth night I’ve been in the hospital and I might be here tomorrow night as well. They won’t let me out until my white blood cells replenish to a number they think is safe enough, and as of today it was even lower than yesterday. It means that getting sick would really suck right now.
All the doctors I’ve had have been nice and super professional and have taken their time explaining everything to me and to Sharon who takes notes for her excel spreadsheets. All the nurses have been excellent and have taken such good care of the CNAs and also the other hospital staff has been so good to me. I have been as comfortable as I can be in a hospital.
I don’t want to be here anymore. I’m not going to run away, but I am already so tired of being in a hospital getting antibiotics pumped into me, shots that stimulate my bone marrow to produce more white blood cells and getting my temperature, blood pressure and pulse checked every couple of hours. I get another antibiotic treatment at 2am and at 4am I get blood drawn so the doctors come to work and see my test results.
I’m so antsy right now. I stare down from my window and see the intersection of 23rd and Lovejoy. I see all the people walking around. I see the people hanging out in front of Nob Hill Bar drinking beer and smoking cigarettes. I see teenagers hanging out next door at Alloto Gelato on dates. I get put into a trance by the blinking red light at 25th and Lovejoy. I pretend I live in one of the giant houses on top of the hill. I want to be out there. I want to be around people laughing and drinking coffee. I want to be in my own bed next to Sharon. I want her to be hanging out with me without her having to wear a mask.
My body has disappointed me so much these last few weeks. It has held up so well under all the abuse I’ve given it. Now it fails me and I have to rely on drugs and a special sealed room to keep me safe from infection. My body gets tired easily and I have to lie down a lot. I used to walk all over Portland going from point A to point B and then C, D, E, F and then G and then back to A.
Now I’m in my head, but my head is foggy. I can’t concentrate or focus on any one thing for a long period of time. I watched the Duck game last night, but I missed whole plays and scores, but I watched the entire game. I couldn’t tell you today one highlight from that game, and I watched the entire game.
I get no escapes. All my escapes fail me now. I can’t read for very long and when I do I read the same line over and over again. Twitter now makes more sense than it did before – ADD reading. Music has been hard to enjoy because some of the sounds have started grating on my nerves that didn’t grate on me before. Anything in the mids and highs get uncomfortable for my ears. I have a really hard time writing or drawing. It takes a lot of energy to watch a TV show or movie and usually I’ll get lost in the middle of the show or movie and be totally lost. I don’t smoke anymore, so a tried and true escape pod is no longer an option for me. I don’t drink or do drugs – I haven’t been on pain meds. There is nothing that takes me out of me.
Even my space outs aren’t escapes. I’m just in my reality, but not paying attention to the world around me. I’m just in my confused and fragmented brain wondering if I’m going to be able to do this.
Hundreds of people are reaching out to me, but I feel so alone. Even when people stop by I feel alone. I feel a little better, but sometimes I don’t know if I’m going to be able to get out of my head and converse. I don’t think no one else has ever been through a similar situation than me, but I’m in a hospital room isolated from the outside world and there is nothing else going on in my life but getting through cancer treatment and hope that my body can start fighting infection again so I don’t have to live in a hospital like it’s a motel. I’ve never felt more alone than I do now.
In fact, I’m just mad at this whole situation. I’m pissed. I hate that I have to go through this. I’m not saying I don’t deserve worst, but I can’t help just being fucking angry at the fact that I’m stuck in a goddamn hospital bed with nothing but a floating brain.
I’m only a 1/3rd of the way through my treatment. When I first heard that I thought that I was already through a third of my treatment, but now it’s just a third and this little bout with infection and a low white blood cell count might have postponed my next chemo cycle by a week or so. If I’m lucky, which lately I’m sure my luck has run out, I’ll be getting out tomorrow or Tuesday and starting my second cycle of chemo on Thursday, but if I have to stay till Wednesday or longer, I won’t start chemo till later, which means I’m doing chemo longer.
Fuck.
My nieces want to visit me, but kids can’t visit me here and kids are little germ sponges. My nieces want to kill me!
I made my niece a comic to explain what is going on.
My sister in law’s godfather gave her dirt to give me. It’s holy dirt from Santuario de Chimayo, New Mexico. I’m supposed to rub it on me. I might ask the nurse to put it into my PICC line.
When Sharon was leaving to go home last night we hugged. I melted into her and realized that because of my body we haven’t been very physically affectionate in a while. Her hug felt so good. It always has felt good.
I know that this little blog was a little more depressed sounding, but I think I just needed to bitch. I am being the best little patient I can be, but sometimes I just want to scream and throw shit at the wall and yell for Dilaudid. Dilaudid would fix everything, right?
I know that I should be grateful. I see all the fucking lists on Facebook. The gratitude challenges. More like the smugness challenge. I am grateful for health care, both the health profession and the insurance. I am grateful for all the people that have reached out and tried to soothe my soul – and some of you have. I am grateful for the love and the organizational skills both in spreadsheets, lists and medical explanations of my girlfriend Sharon who has been my rock through all of this. I would not be getting through this without my entire family who are bending backwards to help me get through this. I’m grateful to all the people that contributed to the go fund me. I’m grateful that I’m going to get through this.
When I do look at the things I’m grateful for I remember that no matter what everything is going to be all right. Some day I won’t have cancer and I’ll be healthy. It sucks today, but I have people who love me, and professionals that are good at what they do treating me, so I’ll get through this.
Thanks for listening, I feel better.
Dave. Keep writing. Keep doing the deal that the docs have you on. Keep Sharon and best friends close to you. You will get thru this. Myles
Thanks for your post. I read every word. I can’t say that I know what it’s like going through cancer but I can identify with you a lot. I used to have epic panic attacks daily. All day long, every single day. They were debilitating and terrifying. I would have constant anxiety like my heart was failing and my lungs were collapsing. I would have to check my pulse all day long, sometimes for hours on end. I can remember hooking up a baby heart monitor to my chest with an attached pair of headphones and I listened for 8 hours straight to the rhythm of my heart. Almost sure that if I quit listening, it may stop. Somehow, by listening I knew I was still alive. I had to breath into a paper bag, spit, pull my eyelashes to allow air to enter into the back of my eyelids and somehow into my sinus cavity to balance out the pressure that was causing my air constriction…. on and on.
I was in and out of the hospital and ambulances day in and day out. I could not quite using drugs but using would make it worse. I got onto benzos to subside the attacks but I would feel better and then use and it would be worse than before. I would quit using and they would still persist. Nothing worked. The mind state I would be in when having these was terrifying. It was a constant experience of my own death. Granted I did not die, I was as terrified as if I had a mortal wound and knew my fate was sealed.
Dying would have been easier because it would have come and gone quickly. This was an all day everyday experience. All my involuntary functions were overridden by my panic. Breathing became a chore that I had to spend tremendous effort to keep up with. I couldn’t do it right. It was all wrong, and it was all killing me. My digestion would shut down. I would get terrible spasms in my chest that I was sure was my heart shutting down. I couldn’t leave the house or be social because I could’t function. It got so bad that I would be released from the emergency room and I would just go sleep on a bench somewhere else in the hospital because I knew I was going to have another attack and I felt safe close by. I would make up stories about an aunt or uncle in surgery when confronted by security.
I was sure that these were all close calls and that the next one might kill me. People would try to talk to me and tell me I was okay and I just needed to relax. It couldn’t be done. Doctors would tell me I was okay and it was just severe panic attacks. I was not convinced.
I can remember being so disconnected from everyone and the world. I couldn’t think straight because my thoughts were captured by panic and fear. When I was under attack I had very linear thoughts focused only inward. My thoughts could not penetrate the bubble of fear I lived in. I remember one time it was so bad I had nearly passed out, I lost control of my bladder and pissed myself. From an observer’s point of view I must have looked like a shot animal acting out my last moments. There were a few times I recall that my desperation would subside in the midst of the panic and I would just mentally give up and ask God to just please take me. Let it be this time that I die. I am ready. I don’t want to suffer any longer.
I know it’s not the same but that was from the time that I was 18 to 29. It even lasted 2 years into my sobriety. I now have an occasional mild attack once every 2 years or so. The point is that I can identify with some of the things you are going through and no matter how much you talk to anyone or how much anyone tries to identify with you they will never know just exactly how you feel. While I write all of this my panic seems silly in comparison with cancer. But what I went through for all those years was only experience by me, alone. I have learned from it somewhat I guess and I can say it has carved its inscription into my spirit. Some of it good, and some of it not so good but the experience is mine and mine alone.
Through all of that the only thing that kept me sane was writing. I used to write a lot. I have boxes of writings from those times. I often reflect. Writing helps. I’m glad you have taken the time to write about your experience Dave. I can’t reach all the way within to where you are in your moments and know, but I have a glimpse of what it is like to be Dave right now and I appreciate your struggle and your spirit.
No matter how alone you feel…you are. We are all alone when we are in our head. It’s hard to leave that place when we are going through something like this. That’s why you feel alone. But you are surrounded by people who love and care about you. It’s when you reach outward beyond yourself that you are not alone. It may take some time to gain some ground but it will happen. Dave, I respect you and I believe you will be okay. I believe it will be hard, and I believe you will have the strength to overcome your struggle no matter how hard it gets.
Please keep writing as your strength allows. BTW, you seem very lucid to me still. You may feel spaced out but your detail and composition is hitting on all cylinders, or so it appears. It may be that you are so smart your spaciness is our average level of intelligence. Haha. The comic you drew was better than I could do even on my best day.
Thanks for this – that comic is everything. I hope you’re counts are up and you can get out and enjoy this lovely transitioning weather!
I really can’t tell you what your writing means as someone who works in oncology research – you have given me an opportunity to remember why I do the work I do and impacted the way I interact with my patients – by giving us this window you’re doing more than just letting people in. So thank you.
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Fuck YOUR not you’re.
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Loved your cartoons for Phoebe and she loves them too, I am sure. It was amazingly wonderful of you to make that for her when you feel so terrible. Thinking of you daily. Better days are coming. hugs from Dana’s Aunt Lucy.
Dave!
Oh crap. You lovely man, I’m floored by the blow to your body, humbled by your grace, and looking forward to when I can see you again somewhere out and about – and give you a hug. You add so much muchness and wonderfulness to this odd little planet. Sonja talked to your nurses (visiting you and one of your bunkmates) and they say you’re the best – I fear they may trump this all up to keep you in their clutches … I’m sure they’re good people and all but you know when they fall under Dave Fischer’s spell who knows maybe all reason and good manners leave them.
Much much much love to you from Sonja and me
Robert
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