Not Feeling Good

After I get out of the hospital Saturday night and spend a weekend back at home, I decide to get back to work planning my next steps Monday morning.  I start most mornings the same way these days.  I sit down at my computer in our home office and the first thing I do is listen to Nina Simone sing “Feeling Good”

When I hear this song, I imagine walking on the pretty bike path behind our house, soaking up the sun and the fresh air.  It helps remind me of why I need to keep moving forward somedays, to keep booking appointments, faxing records to doctors and insurance companies, to keep researching and testing in an effort to keep this stupid diagnosis moving forward.  I want to feel better again, like a normal person.  By noon, I know I will basically be back in bed for the day so I really try and make the mornings count. And hearing the song helps.

This Monday morning, I work on getting an appointment to see a local  expert in neuroendocrine tumors (NETs), with the help of one of my very dear soon-to-be in-laws.   I have an in-take interview with the new doctor’s staff on the phone and after providing details on my history, symptoms, and scans, I am reassured when I am asked if I have had a biospy yet (no!).  They are going to get me in quickly – I can come in to see her the following Monday.

By Friday, I also get a voicemail from the office of another doctor, a high-risk cancer expert at the hospital I was discharged from over the weekend.  According to the message, “my doctor” asked for this referral and that although this expert is booked out several months they are going to find a way to get me in soon.  I have no idea who “my doctor” is at this point, but I am glad someone from the hospital appears to be taking my case somewhat seriously there as well.

The rest of the week, I spend resting.  The steroids I am taking at home are definitely helping to keep the carcinoid syndrome under control, but I am completely wiped out.   I have a couple of “active” hours on my computer most mornings but then am back in bed.  I am limiting showers to twice a week and am not even running errands out of the house  anymore.  I don’t have the energy or the breath.  I still can’t see properly.  And I am really limiting what I eat so I can avoid another hypertensive crisis.

As my life continues to get more restricted, I keep feeling more and more frustrated and bitter and overwhelmed.  By the time I sit down to listen to “Feeling Good” on Sunday morning, I have to fight the urge to throw the speaker at the wall.  It is just such bullshit. I am so sick of this shit.  So sick of all of it.  I am sick of not feeling good and I am sick to death of doctors and hospitals and tests.  The closer the next doctor appointment gets, the harder it is to feel anything but frustrated and angry.  After all the dead ends, it is just too hard to believe I am going to get help tomorrow.  I don’t have it in me anymore.

And even in the unlikely event I walk in tomorrow and the doctor tells me they are going to remove my thymus right away, where will that leave me?  What are the aftereffects going to be? What if it has already spread?  The more I read about thymic carcinoids, the more worried I get.  And best case scenario, surgery is soon and successful and they get it all, I will just go back to where I was in November, before all of this carcinoid crap hit in February – still sick.  Getting rid of my thymus is unlikely to be the end of my bone pain and all my digestive problems and severe fatigue and all the other shit that started brewing almost one full year ago.  I still probably have one or two other tumors that are responsible for those symptoms. How long will those diagnoses take and what will those treatments entail? And these are only the problems I suspect at the moment.  What else is going to rear its head in the next few months?  And this is all after the 18 months I had to deal with Cushing’s…. I feel like Mickey Mouse in the Sorcerer’s Apprentice – the more I try to clean up the faster the brooms keep marching in.

Sometimes it is just too much and today is one of those times.  I have a good cry, I hug M for a long time and I try really hard to remind myself that my goal for tomorrow is just to make a little progress.  That’s all.  Tomorrow is not going to fix everything – I need to accept that now.  But this doctor sounds really good and really appropriate and I have to give her a chance and hope she gives me a chance too.  And she may not solve all my problems, but tomorrow has to help in one way or the other.  The NIH trip felt like a bust, but I did get the Octreoscan which very well may end up getting me diagnosed quicker on this next round.  And even though the week in the hospital seemed like a complete waste of time, someone there did get me a consult with a specialist that might actually help me too.

I am not Feeling Good today.  I am not anywhere close to being able to take a walk on the bike path behind my house and enjoy the sun and the fresh air.  But after the next doctor appointment, I will probably be a couple of inches closer.  Probably no more.  But hopefully no less.

3 thoughts on “Not Feeling Good

  1. Oh Shannon your posts make me sad and angry and frustrated for you !!! But through all my reading I also think because you are such a highly intelligent outspoken woman that you also increase your odds tenfold for getting done what need to be in what seems to be a very flawed and fragmented system of help. I have tagged your blog took me awhile to find it again your fb feed show up sparatically on mine for whatever reason…. I will be checking in now through your blog and hoping and praying for posting progress. Hugs my old university pal!!


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