How to not freak out while waiting to see a doctor?
March 7, 2014 6:55 AM   Subscribe

I have had some weird blood test results lately. My doctor is not sure what it's from, but said that worst case scenario would be leukemia. She wants me to see a hematologist but the soonest available appointment is till over a week away. I have always suffered from pretty severe hypochondria/health-anxiety/whatever, and the fact that my doctor mentioned the L word, and the uncertainty and waiting, not to mention the absolute worst timing, is killing me. I can barely work or sleep.

When I had a physical last year (and first time ever having a blood count) my WBC was a bit high, but the doctor didn't think anything of it. It's steadily increased though, despite a round of amoxicillin, so now I am just freaking out. I am a severe hypochondriac, and a swollen lymph node a couple months ago, combined with an adverse reaction to Wellbutrin, had me thinking I had lymphoma. I had panic attacks and was in hysterics for days. This time, I'm not having panic attacks, but I think I am spiraling into despair. I'm obsessively researching things that can cause an increased WBC, types of leukemia, etc., and filling my brain with information that is in no way good for me.

The worst part is that I have a thing scheduled this summer out of country, which cost my entire savings, which cannot be rescheduled, and I wouldn't even if it was possible. That means that if the worst case scenario was the actual scenario, I would have to postpone or interrupt treatment, to ensure I was strong enough to travel, do the thing, etc. Ultimately, that would be a decision with...consequences.

I have seriously been planning a funeral already and I haven't even seen the specialist yet. How do I stop!?
posted by polywomp to Health & Fitness (13 answers total) 3 users marked this as a favorite
I am a big fan of being a big baby. Can you binge watch things, read, play games, and otherwise distract yourself?

Can you enlist a friend for an evening of polywomp minding?

You cannot have any new information for at least one week. That's just a fact.

In some ways, you're like an Oscar nominee a week before the event. Perhaps that's an entertaining reframe.

Also, can the doc or the doc who gave you wellbutrin provide a pharmacological assist?

Good luck with the wait and the diagnosis.

Oh, and I should not be adding fuel to your WebMDing fire, but some types of leukemia
are manageable conditions with no charge in life expectancy.
posted by Lesser Shrew at 7:20 AM on March 7, 2014

Did your doctor call for the appointment with the hematologist, or did you? Sometimes you can get squeezed in earlier if the referring doc calls and pushes for it as an emergency situation. Can you call your primary and ask for her help with that?
posted by katemonster at 7:25 AM on March 7, 2014

That's a good idea. I scheduled and asked for the soonest available. Thank you!
posted by polywomp at 7:29 AM on March 7, 2014 [1 favorite]

Call the hematologist's office and plead with the receptionist. Have your doc call as well.
posted by radioamy at 7:29 AM on March 7, 2014

Aw, man. This sucks. There's really no way around that fact. I've spent many, many awful weeks waiting for lab results that "might be nothing, but miiiiiiight be [world-destroyingly awful thing]". If I've learned anything from the sleepless nights and sobbing jags, it is this:

- Treat yourself like you have the flu... except instead of the physical flu, it's the LIFE-flu. Be gentle with yourself. Eat comfort food, drink tea spiked with booze, curl up and watch silly movies, seek and accept sympathy and head-patting from your closest friends. Don't even try to be "business as usual" (except during work/school hours, of course), because that's just delusional.

- Conversely, do not do not DO NOT make things worse by obsessively Googling and/or doing that emotional self-flagellation thing ("Oh god, my mom's face at my funeral will be SO TRAGIC!"). If you feel yourself getting pulled into this, you'll be unlikely to be able to pull yourself out of it MENTALLY, so try to pull yourself out of it PHYSICALLY... run around the block, bounce on the couch, scream into a pillow, take a scalding shower, take a Xanax (as prescribed by a doctor, natch), take a nap, whatever: change what is PHYSICALLY happening to you.

- Know that statistically-speaking, it is SOOOOOO much more likely to be either Nothing or a Manageable Condition than a Worst-Case Scenario. Yeah, we all eventually sicken and die. But most of us live long, relatively-healthy lives BEFORE that occurs. I know it's hard to internalize this fact ("Someone HAS to be the 1% that bad shit happens to!"), but try to meditate on that at LEAST as much as you're meditating on worst-case scenarios.

- Know that we'll be thinking of you and rooting for you.
posted by julthumbscrew at 7:30 AM on March 7, 2014 [5 favorites]

If you do call the office again ask them to keep you in mind in case there is a cancellation. Otherwise I think the advice to keep yourself distracted and treat it like the life-flu is great.
posted by SpaceWarp13 at 8:15 AM on March 7, 2014

I had this exact scenario play out two years ago and it turned out to be complications from weight loss and diabetes. Of course, I didn't find out about that until after I went to the hematologist and had panels drawn and analyzed twice. We never figured out what was the cause of the extremely high WBC but they eliminated leukemia as a cause. Just be warned they may not have an answer as to why. When I asked my PCP what could have caused the high WBC counts he told me, with no hint of irony, this - "well, this is why we call it the practice of medicine. Who knows, but it's nothing serious."

One thing I do want to caution you about is that most hematologist (aka oncologists), at least in my experience, do chemotherapy treatment in their offices. I didn't know this when I saw my hematologist the first time so I got a little nervous when I saw bays of folks hooked up to chemotherapy IVs when I went to get my labs drawn. You might want to check and see if that's the case with your hematologist's office if that's something that may bother you.

Don't sweat this and find something to get your mind off it. Go for a long bike ride, go for a long walk, just do something to remind you life is still here with you and that you're going to do what you have to do to keep it that way.
posted by playertobenamedlater at 8:39 AM on March 7, 2014

Here's the good news. They think you'll live. If they thought you wouldn't, you would be seen now.

This is little consolation when you're scared, I know. It's the biggest thing in your life. Sometimes it does help me though when I'm waiting for treatment that I'm waiting behind those who are actively dying. This may or may not comfort you.

I would look at strategies for managing fear. Suggest a copy of When things fall apart. We all get scared, we all get sick, we all experience discomfort, and it's not within our powers to make fear and discomfort disappear immediately so we can live perpetual comfort. We all suffer. The book shares a story of suffering and gives some ideas of breathing through it.

Breathe. Time will pass and you'll see the doctor. Be gentle with yourself. I hope you will be well.
posted by crazycanuck at 9:12 AM on March 7, 2014 [1 favorite]

I literally just went through this and I have some real gems of advice to lay on you here because it sucks and I am with you. I just had surgery for a potato sized tumor in my neck that ALL of February the doctors were like, "hemm, haww, looks like maybe cancer?" and I had to get lots of tests I didn't want and eventually surgery (not cancer!)

1. You will get through it. One of the things that helped me out was thinking about how part of the definition of being a patient is that my job is passive in nature and literally the only thing I have to do is show up and have things done to me. The doctors have these complex jobs of figuring out what it is and doing things to me and literally all you have to do is show up at the appointment and lie there. That's really hard to do! If you do it qualifies you for being really brave. But showing up, that's it. You can wriggle around and make horrified faces. But you'll come out of your appointments and it will have happened will be in your past.

2. If you have any sort of inner sanctum, you might want to consider letting in some of the most beloved people in your life on what you are going through and how much it is stressing you out. I never felt super duper close to my family but they really really came through for me, as well as a some people who ended up finding out at work. When someone gets sick people really really want to buoy you up and make you lasagna and be really nice to you and that makes a massive difference. If you can finagle someone in to going to Dr.s appointments with you it has the potential to make it so much easier for you.

3. The state of not knowing what it is is the worst part and whatever it is, you will feel better when you know what you are dealing with. I am a nerd and spend more time than I need to reading about stuff like this, but there was a psych study profiling groups of women - 1 group that had received a breast cancer diagnosis, 1 group that received a benign diagnosis and 1 group that was awaiting diagnosis. They did a whole bunch of test to measure their stress level and functioning and basically, the awaiting diagnosis group was through the roof with regard to their stress and the other groups were really okay. In the worst case scenario, you will surprise yourself by how well you manage and how life goes on because it really does. But waiting is the hardest part.

4. So this was instrumental for me personally, but YMMV: At the beginning of my whole ordeal, I was pretty candid with the doctors that I have serious white coat syndrome and the fact that I hyperventilate whenever I am in a doctor's office, etc. The first Urgent Care guy who was like, "Yeah, we really just need to check and make sure you don't have cancer" I was pretty direct with him and told him I don't handle medical procedures very well and would he be able to give me an anti anxiety prescription for the times I am in doctors offices and things are happening to me. They are pretty good at sniffing out what's drug seeking behavior and what is legitimate and he was like, "Sure" and prescribed me some Lorazepam which I took before appointments. You might want to tell a PCP or psychiatrist or one of your doctors about the fact that you are really freaking out here and you would like something to take the edge off (if you would), because it can really be done and it really does make a difference. When I had the first biopsy I'd taken a double dose and I was looking all around grinning and thinking, "All of these people are so nice, I really like these people! Medicine is so interesting!" which may have disturbed the people who took me to the appointment but it was nice not having it be excruciatingly scary.

Anyway, I'll keep you in my thoughts, Metafilter loves you.
posted by mermily at 11:01 AM on March 7, 2014 [7 favorites]

Don't freak out. I have chronic anemia and they've never figured out what causes it. My doctor didn't TELL me that he thought I had leukemia, he just let me go to the Hemotologist/ONCOLOGIST and figure it out on my own.

Then I went to WebMD (in 1994) and the CDC websites to read up on ALL the scary-assed anemias there are.

I went through untold blood tests, and poo tests and all kinds of crazy shit. Finally, he said, "We've ruled out everything under the sun. You are anemic, we don't know why. Eat more steak."

To this day my WBC count is high, and the shapes are all weird. I'm perfectly healthy...for me. Sometimes that's just the way it is.

So as we enjoy saying, "don't borrow trouble." There's nothing worry and freaking out will not help, and it will rob you of peace of mind until you're told there IS something to worry about.

So, you've now heard a true story from someone with your exact issue, and you've learned that although the blood work is weird, that I'm healthy despite it. There is no reason to believe that you won't have the same outcome.

Also, I have a friend who is a cancer survivor AND she is now undergoing a pretty drastic cure for Hep C. She is living a great life with a family and friends. It wasn't fun, and the treatment she's getting now leaves her tired beyond measure, but she's LIVING!

Nearly EVERYTHING is survivable. Be comforted by that.

Also, try to relax and treat yourself as well as you possibly can while you wait.

Now for the logistics. As for the trip...if you need to do some kind of treatment, you can get a refund of that money, and you'll do it another time. Your health is more important than any "thing out of the country".
posted by Ruthless Bunny at 1:08 PM on March 7, 2014

I also had a similar thing happen a few years ago when I had an otherwise inexplicable high WBC for a few blood tests in a row. I have blood drawn twice a year due to some meds I'm on, so after a few tests where my WBC was elevated my doctor sent me to a hematologist just to rule out leukemia or other issues. It turned out to be nothing, and in fact my WBC is now normal after I lost a bunch of weight and made some changes to my diet. My GP basically said something along the lines of "well, sometimes when you're overweight or otherwise unhealthy your body just goes WTF and elevates the WBC, but we're not really sure why." So that's another "it's probably nothing" anecdote for you.

I also nth asking your docs for some anti-anxiety meds to help you cope. When my dad was going through a whole mess of medical issues, my doctor prescribed me Ativan, and I wasn't even the sick one! It's not ideal for long-term anxiety issues, but great for short-term things like this that cause acute anxiety.
posted by bedhead at 1:10 PM on March 7, 2014

Thanks, I think I will definitely email my psychiatrist about something for the anxiety.

As for the trip, it's not for pleasure, but is also health related, and just as important for my survival as any potential treatments. I only want to make sure everything goes as scheduled.
posted by polywomp at 1:20 PM on March 7, 2014

I'm fine, by the way. I had to eventually get a bone marrow biopsy to be sure (ow), but it's just anomalous apparently, and the hematologist just wants to monitor it in the future.
posted by polywomp at 10:06 AM on April 8, 2014 [3 favorites]

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