When the doctor says, “I have good news.”

Today I had a follow-up appointment from my IVIG infusion treatments. I had been emotionally working myself up to this appointment because I figured we’d talk about Rituxan infusions, which is the chemo option I mentioned in a previous post.

Some more blood work, some more waiting. And then my favorite hematologist walked in, smiling, and he said, “I have good news.”

“Oh, really?” I said. “You never have good news.”

I was skeptical and not shy about it. I waited while he looked through my chart.

“I believe we might be looking at remission here,” he finally said. Not what I was expecting him to say. Today my lab results showed my platelet counts have been in the same general range for the past three draws. This is not how my immune system responded to the first two attempts at IVIG. The first two infusions sent my numbers skyrocketing only to plummet quickly a couple weeks later.

Remission, unfortunately, can’t be determined by a test. It can only be determined by more waiting. So we wait again. But it’s a good wait.

The only downfall is it sounds like I’ll be on prednisone for a long, long time either way.

Personally, I think the optimism comes too soon. I’d like to see a couple more weeks at these numbers. The difficult part of this process is not having a good baseline. What I mean is I’m a rare ITP patient. I was mostly asymptomatic when I was diagnosed. Most ITP patients are diagnosed as a result of dangerously low platelets, bruising, and bleeding. I was diagnosed by accident.

Basically, we can’t compare my progress to other patients. I’m an unusual ITP fighter.

Ironically, I just ordered a more permanent medical ID bracelet. And this preliminary news comes just in time for September, which is ITP Awareness Month. (Wear purple for platelets!) So hopefully I can share more than awareness next month if my immune system holds up.

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Why I Won’t Take Your Advice

I have written or spoken this monologue so many times over the past six months (yes, it’s been six months):

Thank you for thinking of me. I know you mean well, but I’m really not interested in trying [a new doctor, an herbal supplement, natural remedies, a cure-all beverage, etc.]. My doctor and I have a plan. We’re a team. Maybe someday I will explore your suggestion, but for now, this is what we’re doing.

I believe I know what’s happening and why I’m being bombarded with unsolicited advice. People are interpreting my discouragement with recent results as a white flag for the treatment plan altogether. That is not the case.

It’s difficult to explain this kind of exhaustion until you’re embedded in it, whether it’s ITP or some other chronic illness. Driving to the doctor every week, encountering needles every week, waiting for the results every week. Prednisone every day. Feeling fat, overheated, sweaty, agitated. Tired but unable to sleep. Sensitive stomach. Daily headaches. Hourly trips to the restroom. Clothes that don’t fit anymore.

I hate to list out the things that encumber my day, because so many people deal with so much worse. I am cared for and loved well. I am in the presence of gracious, understanding family, friends, and coworkers.

But some days, I just want a break. That doesn’t mean I want to quit. It just means I want to sleep through the night without Benadryl. I want to stand up without breaking into a sweat. I want to stop involuntarily donating blood to the cancer center. I’m not giving up. I just need a change in the routine for the better. So let me answer your question.

Why won’t I take your advice?

Rather, why do I abstain from the alternatives?

  1. A second opinion. I don’t need one right now. More voices means more options, more opinions, and more decisions to be made. The goal is to keep stress low so platelets can be high. My life is not in danger or on a deadline at the moment. I trust and like my current physician. I consider myself fortunate to have a skilled specialist so close to home. Additionally, most physicians probably wouldn’t treat me since my platelets are not quite in the “danger zone.”
  2. Herbal supplements or non-prescription drug solutions. I’m not saying they don’t work. There are a few that have helped ITP patients. And prescription drugs are refined from these early solutions to health problems. So they certainly do work, but what will they do to my blood? If we introduce a new “treatment” for ITP to the current one, we don’t know how they’ll interact, and if my platelet counts are affected, we won’t be able to know what worked–the supplement or the prescription treatment. Also, a lot of unstudied, scary “natural” remedies are floating around out there right now. My doctor would be pretty upset if I undid six months worth of work with some shady supplement I heard about in an online forum.
  3. Slim-plex-nutri-advo-Jenny-diet cure-all shake powder. Listen. I’ll say what I said to the salespeople. If you are struggling with a chronic illness, you already know there is no magic cure. If there was, it wouldn’t be called chronic. In a moment of desperation or discouragement, don’t spend hundreds of dollars on an as-seen-on-Facebook magic elixir. You will only feel worse later when you realize you could have paid off three months of lab bills with that money. Some people are genuinely trying to be helpful, but some are trying to take advantage of fatigued, discouraged chronically ill people like me. Shame on you. That’s all I want to say on that topic.

So, am I ignoring your advice? No. I’m in a support group for ITP patients. You can’t tell me about a treatment I haven’t already researched, witnessed, or experienced. I think I can speak for most patients with chronic illness when I say this: Thank you. We know you mean well, but you don’t always speak well. I’m guilty of it, too. When you don’t know what to say or how to talk to a sick person, sometimes it just comes out as word vomit. You feel like you have to offer something in order to be helpful.

We’ve had plenty of time to learn to be patient and gracious. Don’t worry. There’s some left over for your word vomit.

Finally a Master of Science in Communication

I stood outside the music hall after graduation for a good five minutes hoping if I stood still long enough, my guests might find me. We were a sea of black gowns, and the only thing identifying me from the other students was a “citron” hood that was as itchy as it was hot. August is not a pleasant month to graduate, but it is always pleasant to have graduated when it is said and done.

I don’t know why, but there’s this song I’ve loved for many years. It plays in my head like a soundtrack at the most opportune moments and seems to apply to every kind of situation I find myself in. It started playing again after the graduation ceremony, when I had a few minutes of reflection unexpectedly available to me.

Here we are
Here we are
Here we are
We’re still here

And what a beautiful mess this is
It’s like taking a guess when the only answer is yes
And through timeless words and priceless pictures
We’ll fly like birds not of this earth
And tides they turn and hearts disfigure but that’s no concern
When we’re wounded together

And we tore our dresses and stained our shirts
But it’s nice today
Oh, the wait was so worth it
(Jason Mraz, “A Beautiful Mess”)

The gentleman who prayed at the ceremony asked us to reflect on who has loved us well during this journey, who helped carry us here. And I started to cry from my seat, even though I was sure I wouldn’t.

I looked back through the pictures (okay, selfies) I took during the processional. The torture hood for Master’s graduates swallowed my neck and really emphasized my prednisone moon face. I thought the puffiness was going away, but these pictures were proving me wrong. They were downright horrifying. So I was hot, itchy, and now mortified at what other people were seeing as they met me for the first time.

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But to be honest, the moon face–it’s a badge of honor. I mean, 8 out of 20 months in this program, I have been dealing with the ITP diagnosis. So, I’ll look back on it and remember how challenging and good it was. And I’ll be continue to be grateful.

In my moment of reflection, the Jason Mraz song played. Here we are, I heard, and first I thought, Here I am, waiting for all seven of my guests to somehow find little me in this huge crowd. But that seemed selfish and impatient as the rest of the song played in my head.

A generous gathering of people who love me have followed me here to this moment. I entered this journey not knowing the changes and hurt we’d endure. I want to say the journey didn’t change me, but my goal was to exit the stage a better me.

If I have gained you or lost you on this journey, I’m sorry. Sorry to you who have joined me for a certainly difficult road ahead. Sorry to have lost some of you. I did change, but I don’t want to go back.

And if you were here for both the beginning and the end, I see you. I appreciate you.

In January 2015, I had no idea I’d be changing jobs or hearing a life-changing diagnosis or burying family members. I didn’t know I’d start blogging again. I didn’t know the Tuesday after graduation I’d be sitting at the cancer center receiving more infusions. I didn’t know I could be as grateful for one day as I was at graduation.

But here we are, here we are. Oh, the wait was so worth it.

 

When Test Results Lie!

Every week I get a CBC (complete blood count) that tells me if my counts are in normal range. In the days leading up to the test, I can sometimes accurately predict what we will see. But sometimes I’m way off in my predictions.

Last week, I was feeling pretty rough. I thought for sure my results would come back ugly. I felt like my body was waging war on itself. Then, all but one test came back in the normal range.

I’m not a medical professional, so I can’t really explain why that happens. My blood, since it’s affected by my autoimmune disease, doesn’t really have a known “normal” right now. When my counts are in mostly normal ranges, I usually feel more tired, have more headaches, and more pain in general. It can be frustrating, because sometimes it feels like bloodwork is the only way to prove to everyone else how you’re really feeling.

Personally, I don’t need bloodwork results to confirm my feelings, but it is nice to get the results back and say, “Oh, that’s why I’m feeling crappy!” And bad results mean my doctor calls to say he’s unhappy, which also gives me some amount of satisfaction knowing we’re going to take action.

If this is you, and your tests don’t always tell the truth about the way you feel, hang in there. And remember you’re the best advocate for your health. Only you know how you’re feeling, so find a healthcare team that will listen despite what the results say.

I graduate with my Master’s degree this weekend. I hope I can manage to feel well enough to enjoy the ceremony and fully appreciate the moment. Either way, I’m walking. I didn’t come this far to stay home. Hail Purdue!

 

Discouragement

When I wrote the last post, it was meant to be for me, to say it’s okay to feel discouraged. Because I certainly was, and I certainly hoped it would wear off by now.

And ten days later, ten days before graduation, I am still not feeling like myself. I am still ready to quit. I can blame it on the prednisone taper for now. I can blame most things on that right now. Like how I was sick all day at work with a mini migraine and a sour stomach. I really needed to sleep, but I toughed it out. Now I’m at home and need to rest, but my heart is doing flip-flops in my chest every time I lie down.

I knew a couple weeks ago that this would be a long, unpleasant process. If you have the choice of taking prednisone or something else, pick the something else. I can’t make a decision about treatment until this is out of my system and I can actually function like a human being who remembers people’s names and doesn’t look like an over-inflated balloon.

While I appreciate advice, most people I talk to don’t understand ITP. But I still hear words of wisdom from the “all natural” people who think a simple food change will make all of this go away. First of all, who can afford to eat that way? Second, that would turn my entire life upside down, as if it didn’t already revolve around ITP, which I am trying to avoid. And stress–let’s avoid that, too.

Blood day is tomorrow. Followed by eight more weeks of blood day at least, and probably more. One more dosage change. Ten more days to graduation. Twenty-four days until grad school is officially finished.

And how many days until autumn? Seriously, this weather is for normal people.

It’s okay to feel [___].

Some days it’s difficult to match words to what I’m feeling. This week has been plenty of that: shrugs and blinking cursors and feeling unbelievably tired. You know, those weeks when all you can think is, I want off this train.

I don’t think a train is the right analogy for this journey. Trains seem benevolent, smooth, and generally reassuring considering the only decision you have to make is to get on or get off. It’s not that easy here. You get on, and then you never get off. But you never decided to get on in the first place. Now, the only decision you can make is whether or not to be friends with the people next to you. And if you will keep your window blinds open. And how much junk food you will order.

I don’t know what train you’re on. I’m on chronic illness. Maybe you’re in a family situation, a marriage complication, a job predicament, a spiritual struggle, or something else entirely. You didn’t ask for this, but here you are. What now?

Bad news: you can’t just jump off. That’s not fair to you or to others or to your story. But I’ll share a perspective change that has helped, even though it didn’t solve every problem I have.

You can see everything as a coincidence (thus an obstacle) or you can see everything as a gift.

I went from saying, what a crappy day filled with all kinds of setbacks to if it wasn’t this, it would be something else, so I’m thankful.

A coworker spilled coffee on her shirt on her second day on the job. She was stressing about it since she was about to head into a meeting (I would be, too, for the record). I offered her a Tide pen and gave her the best advice I knew: “It could be much worse than coffee.”

Seriously, I can think of at least three things more embarrassing than coffee. I don’t think I was very reassuring, but you have to be a creative thinker to subscribe to my perspective. Being able to imagine worst case scenarios is one of my few talents. (Hey, it has its good and bad sides.)

But there’s more to the worst-case-scenario perspective than knowing it could be worse. You can’t stop there, because then you just live in the Stephen King world of what-ifs, and that, my friends, is a horror story.

Once you acknowledge all that could have been, move on to appreciation. It’s a good train, one where you get to be alive and enjoy some things, even if they’re seemingly small things. Because really, even the big things aren’t that big when time keeps pushing you forward.

So feel what you’re feeling. Struggle some, feel sad, take some time to yourself. Forgive yourself. You’ll still be on the train when you’re ready to come back, and so will we.

Take care.

P.S. Here’s a movie suggestion for times like this: Elizabethtown.

Prepping for Round Two

Well, tomorrow is round two of IVIG infusions. The good news is my insurance approved it this time without a fight. Thankfully the fight wasn’t mine, or it would’ve never happened.

We did have the talk about chemotherapy last week. It’s the next viable option, according to my hematologist, for reaching remission. I have some things to think about if I am refractory to IVIG. We can try it as many times as we like (though I saw the bill for round one, and it wasn’t pretty). Since they are antibodies from other people, the infusion is different each time. Sometimes you get just the right antibody, but sometimes you search forever and find nothing.

So at what point do I cry uncle? That decision is getting closer. It has been exactly six months today since we first discovered the problem with my blood. And I started treatments two and half months ago. This is a pretty optimistic thought for an ITP patient, but maybe tomorrow’s IVIG will be the solution, and maybe the next six months will be monitoring the beginning of remission.

Maybe it won’t be. The reality is I’m probably looking at a lifetime of this. My doctor doesn’t want that, which is why we’re pursuing remission so aggressively.

I’m also in my third week of the new job. Telling strangers about ITP is one of the most awkward things I’ve ever done. I don’t feel awkward about my story, but people have no idea what to say. No one has heard of ITP. Most people don’t even know what platelets do. And then there’s the catch-all reply: “Oh, I’m sorry. I hope you get better soon.”

I realize it’s hard to know what to say. I’m not sure I know what I’d say to me. It sounds like a terminal diagnosis for my life’s remaining freedoms. It’s not, but it probably is interpreted that way. If I could give you pointers on talking to people with chronic illness, know this:

  • It’s not a virus you can ride out or an infection cured by a good antibiotic. People don’t just get well, but they also aren’t really “sick” in the way most people understand the word. My immune system is confused. The wires are crossed. I have to figure out how to switch it back or live with it.
  • Instead, how about, “Take care of yourself.” Or, “I hope you get more answers.” Or even offer to help. I have plenty of house projects that will never be started simply because they’d go on for days if I tried to do them alone at this energy level. People with chronic illness want to feel normal, so they won’t always ask for help. But small tasks for some are grueling tasks for others. Not me necessarily, but not everyone feels as well as I do.
  • Be interested. Be supportive. Be understanding and patient. But don’t stop being you around your friend. Normalcy is just as good as understanding and support.
  • Let us sleep! No explanation needed here.

Speaking of sleep, it’s time. Thanks to you if you have been reading along this journey. I’ll let you know how round two fares.

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Therapy cattle dog provides cuddles after long days at work.