Gettin’ Real

Sometimes I feel like I need to keep this blog light, while other times I feel like it’s too light and I’m not sticking to my original purpose in starting it. Today is one of those days. I was online searching for pictures of melanoma surgery scars (my scar from April isn’t healing well, presumably due to my low blood counts. These two diseases don’t get along too well) when I stumbled on this blog. Reading through some of her entries reminded me that I set out here to chronicle my journey with PNH. I’d say in general, this blog has been a pretty accurate portrayal of my life with this disease. More often than not I try to make light of things, and I would say I spend more time than not ignoring my health to the best of my abilities. I’m not sure how healthy this is, but it’s what’s working for me right now. It’s easier to joke and laugh the seriousness of everything off. In general, I get bad news every two weeks, along with spending an hour hooked up to an infusion pump and getting 2-3 shots. If I think about it too much, it’s exhausting. So I do my best to not think about it anymore than I can help it, I just do what I need to do. Well, at least that’s what I try to do. I have unpleasant therapies hanging over my head and I live with a constant worry that my already very low blood counts will get too low. It’s a little like living with a storm cloud just behind you. So I deal with what needs to be dealt with immediately. I oh so sweetly convince the cancer center staff to let me have blood transfusions (if/when I need them) in the chemo room so they are a little less intimidating. I show off my port and make jokes about it, all the while trying desperately to not let it, along with the nasty melanoma scar on my leg, make me feel ugly. I cannot look at myself without clothes on without seeing myself as a sick person and I hate that. I discuss cutoff numbers with my hematologist so I know when exactly I need to be really worried about my lab results, instead of just my normal level of worried. I research the drugs that are inevitably in my future and learn as much as I can, because I know that knowledge is power, as well as comforting in a weird way. I would rather know now than wait until it’s time. I struggle with fatigue and pain that manages to frustrate me to no end. I sugarcoat everything with my friends and family because I absolutely cannot deal with anyone else’s worry for me. I can share the facts with anyone, and I am always happy to share my story with anyone who is interested. But I just can’t deal with other people worrying about me. That has been the hardest part I think. I research everything so I know more than anyone around me every possible detail about my disease and my potential future. It can feel lonely sometimes as I do my best to protect those who love me from the pain and fear that some of that knowledge and “maybes” can bring. In fact, that need to protect is part of the reason I struggle to share as much as I want to around here. But I am determined to do better, because I firmly believe that sharing our stories online is beneficial for all us going through this kind of ordeal. Blogging is therapeutic, for the writer as well as the reader out there who feels alone and like the only one going through it. I know because I benefit from others blogs more than I ever thought possible. I am able to maintain alright for the most part, but I don’t have a lot of extra room in my emotional reservoir for much else so at times I get angry easier than I know that I should. I run out of patience with people who are close to me and sometimes don’t have it in me to try in all of my relationships the way that I know that I should. I have zero tolerance for the incessant “FML” comments on facebook because someone has homework or a flat tire. It immediately invokes a bitter thought process in my mind following the line of “you have no idea what a bad day is.” I don’t want to be like that but sometimes it’s a struggle. And the tough thing is, this isn’t going to end. I am not going to be cured, there is no end to this disease for me, only hope that it doesn’t get worse (there is a very low rate of remission within the disease but it is so unlikely that I refuse to spend on ounce of energy considering it). So somehow, it has to become less of a factor in my life. How to do that I am not entirely sure. For now, it fades to the background most of the time, and really only comes to the surface on treatment days. And I do my very best to remember everyday that things could be so much worse, that I have so much more than so many others. I have a husband who loves me, a wonderful family and circle of friends, a warm home and plenty of food to eat. I have the luxury of not working and being able to focus on my health as well as travel with my husband. I have an amazing medical team who work so hard for me. I am far more healthy than my paperwork says I should be. So that’s my reality. This is me, right now, living with PNH.

I wanted to include an excerpt from the blog I mentioned. She wrote a post on how to deal with people with cancer and it is dead on. I may not have cancer (besides what was cut out of my leg and lets pray that’s all there ever is!) but in many ways it is the closest thing that I can relate my experience to, and I couldn’t possibly agree with this post more, especially rule #6. I know people who have never been through something like this before don’t understand. I didn’t understand before either. But “you’ll be fine” is the absolute last thing I want to hear. I can’t really explain why, but it drives me crazy! It may be one of the biggest lessons I’ve learned through this experience. So now, when my friend with cancer tells me her kids are afraid she won’t be here next Christmas, I simply nod my head and listen. And the people who do the same for me are the first people I go to when I need to talk.

Cancer Girl’s first Rule:This is a bad time to be emotionally needy.”
         As much as I want to be a good friend to everyone, sometimes my own fears are literally the only things I can handle. I am polite, and I try to offer as much emotional support as I possibly can, but I will admit that I will not be winning Best Friend of the Year anytime soon. I realize that hearing about my cancer is scary to some people, especially those closest to me, but when you shut down and start acting all weird to me, well, it ticks me off. I understand that you’re scared, but this is my life in jeopardy, not yours. Please don’t ask me to sugarcoat things because you don’t like what you are hearing. Cancer Girl shares her experience with needy folks: “That’s why the relative who called me after my initial diagnosis to insist, “Tell me you’re going to get better. I need you to say you’ll get better,” is the person whose calls now go straight to voice mail.I


Cancer Girl’s Second Rule: It’s a very bad time to disappear.
     I have been lucky that this has not really happened to me. Like I’ve mentioned a time (or 10000) I have an amazing support system. However, I do want to share a piece of Cancer Girl’s advice. “It doesn’t take big gestures. It takes less than a minute to send an email or a text or pick up the phone or walk over to someone in the supermarket and say, “How are you?” That’s all it takes to let someone know you’re still on her team. And that minute can be the difference between a miserable, scary day and feeling supported and reassured.”

Cancer Girl’s Fifth Rule:Similarly, don’t tell them how to fix this.”
      I appreciate all advice. Really, I do. I have learned more about melanoma and how I want to fight my fight because of the advice of others. However, especially in the beginning or when things get really scary, I just want someone to listen to what I want to do instead of telling me how I should do it. I do not like it when people get too pushy with me. Cancer Girl explains a great way to approach this subject: “If you’ve read of a promising trial or know the best specialist in the field, you can ask if they’d like the info. But don’t tell them that they have to move to the country or go macrobiotic, Helpy Helperton.”

Cancer Girl’s Sixth Rule: Don’t be hasty with the best-case scenarios.
       I try to be a very upbeat and positive person 95% of the time. Having said that, constantly hearing “You are going to be fine!” piss me off to the 10th degree. Of course I want to believe I am going to be A-OK. I want to be the 90 year old woman flirting with my hot doctor. However, I know the seriousness of this disease. I am the one the doctor is speaking about at my appointments. Please don’t push “Everything is going to be OK” down my throat too often. Sometimes it forces me to feel like I cannot admit my true fears. 
     Cancer Girl’s Tenth Rule: And this is the most crucial – be guided by the person’s cues.
     If you ask me how my treatment is going and I quickly change the subject, please do not force me to talk about it. Sometimes I enjoy sharing my story with someone else because it allows me time to vent and educate. Other times I want to be a normal 24 year old girl, at the bar, with her friends. Listen to Cancer Girl on this one, “Respect their limits — it’s their cancer party, and they get to call the cancer shots. You don’t have to cure anybody. You don’t have to cheerlead. You don’t have to do very much at all. Just be a friend. Just stick around. Just let them know they are not forgotten even if they’re not around as much lately. They are not scary because they look different. And that if they can handle this, you love them enough to handle this too.”


6 thoughts on “Gettin’ Real

  1. Thanks for sharing what you are going through and tips on how we can understand and support you. I honestly have no idea what PNH really is, and while I get a good idea from your blog on what you are going through, I can also tell that you don’t want it to control your life (even though it probably does). And I haven’t looked it up because I don’t want to define you with this disease either. I like you just the way you are, and I don’t even have PNH but you’ve helped me so much on my own journey as well. I’m grateful you are here. Thanks for sharing the hard stuff.

  2. You are loved by so many because of WHO you are not what you are. We all have our journeys in life, but it is what we take from them that matters. Yes there are somedays where you just need to tell everyone to “disappear,” it is your life and your PNH. Girl one of these times I see you we are going to have to compare scars! I think I may have you trumped on that one! They are part of you, the you that is so loved.

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