Getting Scared and flipping out.

So, I have been home from my BMT since 2/28/11, the transplant date was 2/2/11. Aside from some moderate GVHD in the form a rash everything seems to be going fine. My peripheral blood is all normal except for some reasons my platelets keep trending down, on discharge they were 80, last check they were 50 and today's were 30. The nurse called me yesterday and said the actual slides look fine, nothing abnormal. Then, as I'm on the phone with my mom telling her my progress the nurse calls again and wants me to reduce my prednisone from 120 mg a day to 80mg a day and go Sat or Sund. to get some labs drawn to see why my platelets keep trending down.
I know logically it could be any number of things, most likely the steroids but I automatically go right into panic mode and don't know why. My first and biggest fear is that my AML has come back and that this is way to soon. I start hyperventilating and totally loosing my cool. This reaction is not like me. I have to go in the other room because I don't want to scare the baby with my hysterics. I don't know why I automatically jump off a cliff when presented with news that really may or may not be bad. I don't' know if it is the medication or the fact that when I first got sick I felt like I knew deep down I had Leukemia and it turned out I did, even though my family and friends tried to placate me at fist. So I wonder if now I am somehow mentally set up to expect the worst.
Most days I try to not be like that, it's actually not so bad, I feel tired but happy and thrilled to be home with my partner and baby. But one ounce of potentially bad news and I suddenly am out of optimism and strength and sink into a black hole.
Sorry for the vent, I know my partner cares but even he admits that as much as he loves me there is no way for him to know exactly what I'm feeling. Hopefully someone here does.
Please wish me luck with my platelets and bone marrow biopsy Monday.
Thanks for listening. :(


  • 7 Comments sorted by Votes Date Added
  • For one don't apologize for venting that is what this place is for! (((HUGS))))! I'm not a Dr. nor do I know anything about what you are writing about medically...honest here...but I feel for you so much. Anxiety is caused by so many different things. Are you taking any anti anxiety meds or caN you? I'm not a pill pusher but Ben my husband was automatically put on anti depressants and anti anxiety meds right away after his DX. For one the stress this C word brings! And his meds that he has to take for seizures cause much anxiety on top of seizures I know anxiety all too well...and the fears!

    Do whatever you can to reach out/talk/get support!!! Tell your Dr. you are experiencing high anxiety. I think we all can relate to the roller coaster of emotions one minute you feel the gratitude of living, the next fear of death, the next fear of struggling through another tough road. I am thinking good thoughts on your results...and when I start thinking scary bad thoughts I try to stop them right off! Just try to stop them and think of anything else! Turn music up...whatever to wipe it from your mind! Or do whatever you can to get it out! Like here writing helps me tons. I can get it out and try to move on.
    It definitely is a struggle to pretend like everything is ok all the time, when underneath all this crap lies...but it's a life right.

    This is our life and we have to make the best of a horrilbe situation!

    On another note I love your pic it makes me smile...very sweet! :)
  • We've definitely all been there!! Autumn is right though, you just have to whatever you have to do to get it out of the forefront of your mind. Even doing dishes can be enough of a distraction for me. The fact is that the fear is always right there...right under the surface...right behind whatever you're doing to keep yourself occupied. Looking back, there are whole weeks that I don't REALLY remember because it was everything I could do to keep myself from sobbing and rocking in a corner. I'm definitely sending prayers and good thoughts your way that everything is fine. If they said everything looks good under the microscope, I'm sure your in the clear.
  • Thank you guys for listening. I will stop apologizing for venting. Looking back now I actually think I may have had a bit of Post Traumatic Stress Disorder reaction, I've never had an actual panic attack before, except for freaking out when I was first diagnosed. Not that I need an excuse to freak out once in a while but at least I can let the Dr. know I may need some anti - anxiety pills. I am still anxious about tomorrow and Monday but am not letting it mess up my time home with my family.
    Thanks again for listening.
  • Any time! We've all been there...its a crappy place to be, but at least you're in great company.
  • Big Hugs Alison!! We are here for you!
  • CareyCarey Community Member
    There isn't much we can do about our blood counts. I'm not sure what your prep chemo was, but mine had slot of residual effects on my counts, to the point where they trended down for about 2 or 3 months after. The prep chemo is Nash stuff and is designed to kill your old bone marrow and immune system. Between the time you get your cells and your new marrow starts to do it's job, there's a big gap when the old marrow is dying off and the new marrow hasn't grown enough to produce much. It's like having a factory that's just been built, and it's hiring, but there's not enough workers to produce much. But as you get further out, your counts will recover. The immunosupressants don't help your counts any and it's very important to get off of them as quickly as possible, but you have to balance that with managing the GVH. My doctor put it well when he told me the balance of medicines isn't really science, it's more art. Don't get down about fluctuations in your counts. Getting uptight or worried about your counts so close to transplant is counterproductive and can drive them down. That's not to say dont pay attention to them. Right before I crashed out last year, I was running all normal in my counts, then I had a major GVH flare and my counts bottomed out. It took about 6 months for them to recover. But they were the first indication that something major was wrong. I went from a WBC of 6 to 2 and platlets from 90ish to 30 in the course of a week. All of the aftereffects of a BMT are scary and they are contradictory too. Keep your doctor informed of everything, especially the emotional aspect. We're always here to help out too.
  • bpojb03bpojb03 Community Member
    instead of starting a new post with the same title i figured id tack on to your post alison. hope you dont mind.

    but i am scared and flipping out. teary eyed, chest pain, and i feel like i need to run. literally want to get a hamster wheel for my room...

    like you i am easily losing control and having to excuse myself from the room. ive been like this before though. hormones are usually the culprit but it feels different this time. i even for a second considered asking about going back on bipolar meds until i remembered how terrified i am of meds and how much they work opposite on me. i usually control it by keeping a very regimented schedule of sleeping, eating, and exercising. life had a different plan for me this month though so right now it feels like it is controlling me. my stress level is through the roof.

    just venting. took some benadryl. going to bed. guess i should start a blog or something. whenever i try to write a full blog post my head completely empties of all the intelligent thoughts i had planned.