I really really don't want to write this post. Don't freak, it's not bad news I haven't already dropped on you. It's just that, well, I have cancer...and it makes me feel sick. Apparently, despite the repeated verification by doctors and general knowledge anyone with cable has about cancer, I need to be reminded that cancer makes you sick. It is still news to me. I need to be reminded that cancer makes you sick, I need to accept that cancer makes you sick, and I need to ADMIT that cancer makes ME sick. I don't want to write this post because I don't want to admit that I'm not able to sail through cancer treatment while I'm just a few weeks postpartum like nothing is happening. I don't want to admit this is hard, but the last few weeks have been so hard.
On a particularly bad night right before Avery came home I was blessed to read this post by Anne over at Modern Mrs. Darcy about the fact that life is hard and we should just admit it. It's a real gem and it has a great sports metaphor so go read it. She said:
"There’s no shame in the struggle: the struggle is what makes it great. The struggle is what makes it glorious."
So...in that spirit...it turns out I have cancer, like, really have it.
Hi, My name is Nella and I have cancer.
HI NELLA.
I realize that of all people I should not be the last one to come to this realization, that I have cancer, that is. After all, I've been typing it and saying it and living it officially for almost 5 months now, more if you count all of the 3 and a half months it took to diagnose me. But honestly? For most of it I felt kind of like a fraud. I felt bad even saying the word cancer in reference to myself. Chemo was hard but manageable when I was pregnant, but my oh my, it is a brand new beast postpartum. These last two treatments since Avery was born have really kicked my butt. Without a doubt these last few weeks have been the hardest of my life so far. The chemo is hitting me so much harder than before. I'm sicker, tireder, and just generally getting my butt handed to me. That is the God's honest truth. I guess it makes sense since it's pretty much general knowledge that having Chemo hands your butt to you and actually, having a newborn hands your butt to you, so it should follow that going through Chemo and having a newborn would throw your butt at you. If we were talking about someone else that would be as plain as the nose on my face but since I'm talking about me I've been a real numbskull.
A big reason that things are worse now is that I have to get Neulasta, which is a synthetically modified protein that stimulates my bone marrow to make more white blood cells. I've been to Chemo twice since Avery was born and the 2nd time around my blood work showed that my white cells were very low. Very scary low. Low enough that I now have to get a shot of Neulasta after every Chemo. Which means another trip to the hospital after every Chemo and another poke with a needle and I've had a DIPE FULL of getting poked with needles. The thing about Neulasta though, is that the inconvenience of the extra trip to the hospital and the discomfort of the extra poke from a needle is NOTHING compared to the total jerk that Neulasta is. If I were to anthropomorphize Neulasta I would say Neulasta is that person who is so very smart and capable but is inordinately aware of how very smart and capable they are and feels the need to lord it over everyone they encounter. Neulasta is that person at a party who could be a great conversationalist because they are very insightful and knowledgeable, but are instead miserable to talk to because they are such arrogant windbags. Neulasta would be that person because Neulasta does a great job of recovering your white cell counts, but won't shut up about it by giving you horrible bone pain and occasional difficulty breathing. Neulasta works. SO WELL. But--Neulasta hurts. SO BAD. Here is where I briefly address the medical community on the behalf of the rest of us:
Dear Medical Community,
I am a patient who has been diagnosed with a life threatening illness. I am currently undergoing treatment for said illness. I am confused about something and I hope you can help. You have completed a great deal of very intensive, very expensive training which means I am supposed to grovel at your feet and hang on to every crumb of wisdom that tumbles from your experienced lips. If you do not want me to google my situation why do you withhold simple information that could save me from suffering needlessly? If you want to be entitled to rolling your eyes at the mention of WebMD, why do you only seem to acknowledge the existence of certain side effects only after they are happening? Do you fear the power of suggestion? That doesn't seem very scientific and from where I'm sitting it seems a bit cruel. Please advise. I await your wisdom.
Sincerely,
The Patient*
*Brief aside to actual Medical Professionals who might happen upon this blog: I realize this is snarky and unfair. It's just that sometimes you drop the ball and it's a day at the office for you but it's a HUGE DEAL to us. You're forgiven, but please take this under advisement. Thank you.
Anyhoo, what prompts this correspondence? Well, one morning after days of horrible pain throughout my entire body and breathlessness that was bad enough to make me call the doctor, I googled Neulasta along with the symptoms I was experiencing. I found out that what I was experiencing was extremely common despite the fact that I had been told to expect "flu like" symptoms. I also found out that for many patients, Claritin can make a huge difference. Yes, over the counter Claritin that helps millions of allergy sufferers everyday and is readily available could take away crippling pain and my scary struggle to breathe efficiently. I had Michael take a look at the structures and mechanism of action and blah blah sciencey blah and he felt it was plausible. We decided I would try it next cycle because if it worked that would be awesome, and if it didn't, a few doses of Claritin in my system would be no big deal.
The night before my next Chemo treatment I took a Claritin just like the internet told me to. The next day when I was having a check up with my oncologist and then getting checked in for Chemo I reported my bone pain every single one of the eleventy billion times people asked me for my information and about my symptoms. You know what happened every. single. one. of those eleventy billion times? Before I could even ask about the Claritin? Doctor after doctor after nurse after nurse said "Oh, did you try the Claritin?".
Did I WHAT?!?!?!? Are you freaking kidding me? Did I try the goodness gracious Claritin? NO!!! Not until I had suffered for almost 2 WHOLE WEEKS because you told me to expect "flu like" symptoms and never breathed ONE FREAKING WORD about bone pain or difficulty breathing or Claritin!!!! I had to GOOGLE IT. Ugh. So anyway, I tried it and it helps and thank you Jesus (and Google) because even without the bone pain and difficulty breathing I'm just barely getting by.
You know how people say that addicts have to hit rock bottom in order to admit they are powerless to control their situation? Well, apparently biology deniers have to hit rock bottom before they will admit that cancer makes them sick and that having cancer and a newborn makes them sick and exhausted. This week I hit rock bottom. That's especially pathetic because I have help. My sister was there everyday and night helping out so much, but a lot of the time I would make her sit there holding the baby watching me do stuff she was there to help me with. How ungrateful and prideful is that?
All of my denying that I was sick and needing A LOT more rest and A LOT more help ended up with me having the WORST DAY EVER. You guys, I got a speeding ticket and hit my sister's car with my van. IN THE SAME DAY. You know why? Because I was deliriously exhausted from trying to pretend that going through Chemo and having a newborn weren't draining. I was basically drunk without the drinking. I had no business driving but I did anyway because I wouldn't admit that I couldn't. The next day I ended up back at the hospital with a fever because I didn't take care of myself. To sum it up, I let my stubbornness and pride put me and the general public in danger. I'm so thick that that's what it takes for me to admit that cancer makes me sick.
I didn't want to write this post. I'm glad I did though because it turns out I'm a mental neat freak. Did you read Jennifer Fulwiler's awesome post about mental neat freaks? How does she do it folks? So insightful. Anyway, that's definitely me and writing this out helps me clear out my mental clutter. My actual house will never look like a neat freak lives here, but I definitely have OCD when it comes to my thoughts and emotions. The general mental load of 6 kids and a husband and a dog and a household requires regular mental housekeeping. Add in a kajillion doctor's appointments and a newborn and Chemo brain and now school and homeschool and kids activities starting back up for fall and I feel like I woke up one morning in an episode of Hoarders in my brain. I'm also glad I wrote it because if other cancer patients, especially Moms, ever read this blog I want them to read that cancer makes you sick and it's hard so they'll know it's ok to be struggling.
You hear a lot about "battling cancer" and "fighting cancer" and I understand what people mean, but that can be a lot of pressure on a patient. A lot of the "fighting" and "battling" looks and feels like doing nothing. It's hard to reconcile all that brawling everyone's talking about with laying down and sleeping and watching Downton Abbey reruns and reading blogs but that's really what it is. Sometimes the battle is really just the battle to sit down and let someone else do the dishes or pack the lunches. Sometimes the battle is telling yourself to sit down and accept help graciously.
Finally, I'm glad I wrote this because I needed to out myself because this morning I woke up feeling well enough to write and I started back in on the denying and making plans to do things I cannot afford to do. I have cancer. I am sick. Cancer makes me sick no matter how hard I try to deny it.
Hi, my name is Nella and cancer makes me sick.
You hit the nail on the head mama: sometimes the fighting IS sitting back and accepting help. Praying for you daily. xoxo and love to the kiddos and Michael, Katie
ReplyDeletexoxo
DeleteTears for you, Nella. I'm so sorry you're going through this and I hope it gets better so soon. And you totally nailed it with your letter. Seriously. Stop rolling your eyes at our googling if you are not going to look us in the eye and spend more than a flippin' ten minutes with us.
ReplyDeleteI found you from Kendra's blog. Praying for you.
ReplyDeleteAlso, I can't find an email address for you on this site but my email is this - kellyannhalverson (at) gmail dot com and I wanted to ask you something privately.
Nella you are so brave and strong. My heart and prayers go out to you. I wish you a speedy road to remission. You are a wonderful person deserving of love, health and happiness. Thinking of you.
ReplyDeleteI am so sorry that you are having your butt thrown at you. That DOES sound painful. ;-)
ReplyDeleteI am on a committee at our church, and we take meals to those in need...whatever need. But there are many people, like you, who just think they can handle it all, and fell guilty taking a meal. I always say, there are graces in giving AND in receiving. Let people help. They want to help. It's not a burden. Think about how satisfying it is to sweep the carpet when it's all covered with crumbs. Strange analogy, I know, but that's how it is helping someone who really is in need. It's very satisfying! I wish I could bring you a chicken pot pie and do some laundry for you!
I cannot tell you enough how awed I am by you and your strength. I think what shows real strength is your acknowledging that your butt is going to -- nay -- is getting kicked (and handed to you as you so eloquently put it). The real strength lies in recognizing where we are, because without that how can we let God help us?
ReplyDeletePrayers for you, Nella. And keep posting.
Nella, I feel so privileged that you are allowing us to witness your hard fight. Yes, so many people who fight such a nasty enemy keep their heads down, keep to themselves, and sometimes those people don't ever admit to the butt kicking that they must face and overcome. But it's incredible that YOU ARE. You ARE facing the butt kicking. You ARE being brave. Your strength to face the battle that cancer is, to admit that the battle sucks, is so inspiring. I continue to pray for you!
ReplyDeleteI've been feeling a little kicked in the butt lately, just by ordinary life, no cancer, no homeschooling, no newborn, just regular everyday stuff. You are very strong, feel free to de-clutter your brain whenever needed, I'll be reading each word and praying really hard for you. Hugs from far away :)
ReplyDeleteI love hearing your real life updates. I think about you all the time, and your situation is so unique but could happen to any one of us, and until it does we would never know what it's really like. Except that we can catch glimpses now and then with your honest writing. It is so cathartic for you to write about it and feel the prayers and love we have for you. I'm such a whiner now and I'm not even sick!! I don't know how you are keeping up the sense of humor and the strength, but you really are an inspiration. When (God willing) I'm up at night, exhausted from feeding my 6th baby, all I have to do is think of you and it will put my "suffering" right into perspective. You know we all have to suffer before we get to Heaven, right? Better to do it on this Earth than in the next, methinks. You've pretty much got a one way ticket to the Pearly Gates :)
ReplyDeletePraying for you Nella. Please go watch lots of downton abbey and take care of yourself! :)
ReplyDelete"Sometimes the battle is really just the battle to sit down and let someone else do the dishes or pack the lunches. Sometimes the battle is telling yourself to sit down and accept help graciously."
ReplyDeleteSo beautifully stated Nella! This is true no matter what battle someone is going through and will try my hardest to remember. You are in my prayers. Your strength, humility, charity (your letter to doctors), honesty, and faith are an inspiration.
Praying for you, sweet pea! Your grace (and sense of humor!) during this insanely difficult time blows my mind. Thank you so much for sharing your story! You inspire me.
ReplyDeleteTerrific post, Nella. In particular, I thought your observation re: "fighting" cancer was so enlightening. That one's going to stick with me.
ReplyDeleteI'm so sorry for how rough these last few weeks have been on you (not to mention all the rest). So, so sorry. I'll keep praying.
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