Let’s walk, shall we

It was just yesterday that I walked into my oncologist office for a visit. I'll take you with me, not because you've never been to a doctor appt, but because going to see "this" doctor brings about different feelings than any other doctor I see. 

Typically, my monthly oncologists visit would include lab draws and a possible treatment of some sort (phlebotomy or iron infusion) and then every 3 months I will actually see my oncologist to review how "my numbers" are looking. So as I typically do, I walk into the office, check in with the same-always-there receptionist and have a seat in the main waiting room. I look around and begin to pretend what the other patients are there for. I think, I bet she's a new patient. I keep glancing the room and think, I bet they are here for a treatment, maybe chemo. Still glancing around, I wonder if he's here for a follow up visit? I'm making up other people's lives for them as I sit there and wonder if they wonder what I'm there for. And I secretly hope they think 'she doesn't belong here'. But likely what they are thinking, is that they too, should not have to belong here. 

It doesn’t take long before my name is called and I step through the held-open door for me, but this time it was different. I was escorted left instead of right. Odd. I was being called into the business office first this time. This is new. It felt just like going to the principal's office. Little did I know that I had a balance of $792.36 remaining from some treatments I had back in April of this year. Turns out insurance didn’t pay and it was time for me to pay. It’s a little surprising to be told this, but what was more surprising is that I never got a bill nor did they ever send me a bill, according to the billing lady behind the desk. As I sat in the principals office, she begin to review with me the details of this said balance due and was trying to figure it out herself as she went. Let's see she started, what was charged, what insurance paid, and how much I would owe today all while her fingers are flying on her calculator. She asked if I had already paid this and the blank stare on my face said I had no idea. I mean, this was back in April and who knows what happened this past April because 2021 has actually been 3 years rolled up in one. I was watching her from just-above my own self as if looking down on us sitting in this little room talking about 700 and something dollars for a treatment that is trying to help me extend my life . It doesn’t seem like that much money for something that can help save your life. Yet, even as this is a regular thing for me (just trying to extend my life a little over here) and insurance isn’t really all about paying it so this one'll be on me. As the little white room with the door shut seemed so insincere, I wasn’t really thinking about the money, or how the lady was telling me this information very coldly, but I was actually thinking about all the other cancer patients. How much are their treatment(s)? Do they have insurance? Are they all escorted in to the same little office with white walls, a small fake-wood children's sized desk, sitting in an chair whereby my knees hit the front of the desk listening to someone tell you that you must basically pay before you can be seen that day. It makes sense, as those charges have been incurred and should be paid. It just isn’t always the way you want to start a doctor visit that isn't going to be telling you some news good anyway. And do other patient's think that same thing when they are called to go left and not right? Are they able to pay these bills and what if they can’t? I still cannot figure out why I had never gotten a bill or for that matter never sent me a bill, but she did not know why the "the system" did not generate one for me. I realize in that moment that this surprise-visit of being called to the back and going down the hall to the left instead of the hall to the right where I know what’s going to happen, has me thrown off me a bit now. After the billing employee finished with me and I was paid in full, I was then directed to proceed to the lab. Usually, that’s the first thing I always do when I see my oncologist: They call me back to have my labs drawn so the doctor will be able to see "my numbers". My numbers determine my life. My numbers determine my treatment. And my numbers are always the topic of conversation in my visit with my oncologist. Since I had come down the hall from the left instead of from where I would normally travel from, the lab lady was a little confused to see me, and asked me to have a seat and wait a minute.  I did so as asked, as I already felt like I was in trouble. And before long she called me back into the lab room and proceeded to draw all my labs as instructed by the doctor on her computer. This is what she does all day long and she does it very well. They are always very very very nice in the lab. Sometimes I even bring fresh eggs for the ladies there. While drawing blood from a bulging vein, she mentioned how happy she is that I had a vein for her today to draw from and that they had been very busy, as they had been closed the previous Friday and then the Monday for the Christmas holiday. And it seemed every patient was now here on this Tuesday doing the things we all are there to do. I sensed it's been a long day for the lab lady and she was happy to see a patient whose lab draw was easier than others. I was happy to oblige and happy my veins are still cooperating. You're welcome, I'm thinking, like I have something to do with it. The lab lady then sent me to what they called the sub-waiting area. That means that you don’t have to go back out to the official big waiting room out front, and instead you travel down the long hallway to another waiting area more towards the backity-back of the office while they process your labs and get the results after which the doctor will see you. This is where I sit and wait, wondering what’s going to happen. Silly me, I know what’s going to happen. The medical assistant will call my name, and she did. I have all the vital signs taken as usual and my blood pressure was up just a touch although nothing profound. I think to myself it was the billing office fun that jolted my blood pressure up a little. The medical assistant has no idea about that nor do we discuss it. She 'rooms me' (places me in one of the exam rooms) and asks me all the usual questions of 'any medication changes since we last saw you'? 'Are you having any pain'? yet never "how are you today". I remember smiling through my mask at her thinking how she's just done. She's out of gas. Done with her day. Maybe they are short-staffed and very busy, and on this particular day, this wasn’t the usual medical assistant who’s normally with my oncologist. It was just something I noted to myself. I was simply a means to an end for the nice yet distant medical assistant, I was not really a person. I imagine she's seen alot of folks that day and like most all of us at the end of a long day....we just want to go get in our cars and go home. I felt like she was in need of an escape. 

I still find seeing an oncologist a very surreal experience. It just doesn’t seem real that I have cancer, and I wonder if the other patients feel that same way. Then sure enough, my labs must have completed processing and showed up in the computer because the oncologist walks in the room and we greet each other happily. Sometimes I think he feels sorry for me, yet I may just be projecting that on him. His demeanor is always one of care and concern. We do "my numbers" dance as we always do and he tells me my numbers are high, which we both find not unexpected. He had given me a reprieve from phlebotomies while I was training for my most recent Ironman triathlon, and now I have to get back to treatments. He asks me when my next race(s) are. He writes it down. He cares. I know that he really wants to help me accomplish my running and triathlon goals. He and I are a team because I can't do this without him. My body will not allow it - unless he makes these special considerations to help me. And he does. I tell him when my next race(s) is/are and that I hope to do another Ironman triathlon in the fall instead of the spring - to give myself a little longer training time. He begins to tell me what I knew was coming: I will need a phlebotomy, and in particular, I need one every two months for at least the next six months and that he knows this is not going to make me feel very well, which will make it hard for me to train for the race. But he says he will make a special consideration (as he's done before as well) to provide me with a series of iron infusions before my race to help me feel better around race time. He's just as fanatical about helping me get to the start line as I am about wanting to get to the start line. He’s literally helping me actualize my dreams. He does remind me that I am not his 'usual PV patient' (whatever that means) and that typically iron infusions are counterproductive for my condition, but due to the endurance racing that I enjoy, he will do it for me because he knows how important it is to live my life and pursue my dreams. As I look him in the eye, it’s almost as if I see his pain. I pause. I ask him what it’s like to see cancer patients all day long. Is it hard on you? I ask him. Without breaking eye contact, he looks past my eyes and into my soul and says yeah it’s hard. And he just keeps looking at me. And he says again, like he's confirming it: yeah, it’s hard. And then he catches himself and says thanks for asking, and continues to say that the hard part for him right now is that Covid has postponed many patients from getting the scans and the much needed health care that they need. He continues by saying that he's seeing many patients whose cancer has worsened without the follow up care that cancer patients need to be getting. And that Covid has made that hard for many cancer patients for many reasons. I feel bad for him.  I get the feeling that he feels sad for me too. But I’m not sure, because I'm still watching him as he searches for his words carefully. What I know for sure is that he wants to help me, and everyone else. We review "my numbers" and we review the last year of my numbers and the changes that have occurred and talk about the progression of my blood cancer. Everyone’s progression is different and since there is no cure he reminds me what numbers and values he would look at in my lab results to determine that progression. He comforts me by saying that he's on the lookout for changes that I would "need to know about". We then talk about the few other polycythemia vera patients that he has in his practice, not in detail mind you, and he lightly comments that he wishes they would exercise. I thought that held some irony in it because fatigue is the #1 side effect of this particular blood cancer. Exercise seems unlikely to be on the top of a PV'ers To Do List. 

I’m very fortunate that I have found somebody who helps me realize my dreams by providing cancer treatments that cater to me. I think about how he does this for all his patients and how wonderfully blessed we are to have him as our doctor. As my oncologist and I talk about this blood cancer, its progression and living life, I think about how many times a day he has these types of discussions to try and help people with their life. I watch him carefully, as if I'm an observer and not the patient. We quietly look at each other and sometimes I think I feel bad for him and that he feels bad for me. And at the same time he’s trying desperately to help me and I’m desperate for his help. Desperate is a strong word, but I'm going to leave it there because if I didn't have him as my oncologist, I would be desperate for someone to help me manage this condition so that I could do all my favorite things I like to do. Or at least try to do them. These office visits remind me of the fragility of life. Sometimes I get so busy living my life that it takes an appointment with my oncologist to bring my reality rushing back like a wave slapping the sand on the beach. I think that’s why I don’t like going to these appointments all that much because of the heavy reminder of it all. It’s easy for me to forget I have this blood cancer when I’m not there, in the exam room looking at the computer screen that my oncologist has swung around for me to see, showing me things I'd rather not see. But I can never un-see it. I can't un-know it. It's like a shirt that's inside out with all the stitching and rough edges showing. That's what my oncology visits feel like. The imperfect side of life showing up like I'm wearing my shirt inside out with all my rough edges in full view. 

2022 will include life saving blood drains. Not that 2021 or 2020 didn't, because they did as well. Here's hoping that that will bring my numbers into a range that is satisfactory, and then because doing that makes me feel so lousy that the possibility of five weeks of iron infusions later this year might help perk me up. Seems kind of like a nightmare dressed up as a daydream, right? Because since iron is what encourages the body to create more blood, it typically does not make sense to give iron to someone with my condition. Yet, the inability to store - and have enough iron - is a piece of the puzzle that makes the puzzle impossible to solve. This crazy circle just keeps spinning round and round, like a gerbil on its exercise wheel. Lucky for me, my oncologist is willing to practice the art of non-conformity for a non-conformist such as myself. He creates options and treatment plans catered to me that continues to allow me to be me. If I'm not me, who will be me. I appreciate him more than he will ever know. 

Turns out, the Infusion Room was full to the brim and therefore I was scheduled to come back for my phlebotomy treatment next Tuesday. As I glanced in the Infusion Room as I walked by, my mind still tries to trick me into thinking I'm not them. Yet, I AM them. They are me. We are fighting a fight many will lose. All of life's blessing must be returned in the end. I just want to walk in that room and talk to every gaud damn one of them. How are you? I want to hear all their stories, their pain and their joys. They, like cancer patients are often perceived, are "the bad thing". Oh, that's Joan. She has cancer. Uncle Joe? Yeah, he's got cancer. I want to tell them they are not the bad thing. To not skip to the end. I want to tell them to turn on the Hallmark channel and start checking off all the movies in the Hallmark App one by one. Surround themselves with all kinds of happy. You are not the bad thing.

Thanks for coming along to my visit,

Cyndi