A Health Update

I figured I would add a short health update here this evening.  

I'm still waiting on some of the results from the bone marrow biopsy to come back but I think most of the results have come back at this point.  One pathology report is actually hidden from me and has been hidden from me for the past week which likely means there is something in that particular report that needs to be discussed (ie, not the best of news).  I meet with my oncologist again in three weeks, I think...  maybe in two weeks.  For some reason, the 18th of April is standing out in my mind though so it is probably in three weeks.  Naturally, until I meet with my oncologist, I will have no definitive answers.  Actually, I still may not get any definitive answers when I meet with her since we're (well, really our health professionals) still learning about this crappy illness.  

That being said, there are some concerning test results that have come back since my biopsy.  Some of my numbers are worse than when I went into the hospital in January so that isn't good.  The good news is that all the pathology reports that I have seen thus far are reporting that my cell morphology is normal.  If the cell morphology was not normal that would have been the absolute worst, devastating news so seeing that my cell shape in my bone marrow where cells are formed is normal was a bit of a relief.  That, however, does not tell the whole story.  It is simply a spot of good news since it likely eliminates the absolute worst news I could get after a bone marrow biopsy.  

In the meantime, I am trying to cut back on my extra high dosages of medications that I have been taking since my hospital visit in January but that isn't going well.  Every time I try to cut back, my health becomes unstable again.  By unstable I mean that I'm again experiencing difficulty breathing, flushing, and the fatigue is brutal.  My bone pain seems to worsen too.  I've also been experiencing some gastro-intestinal issues every now and then.  Considering some of the test results that I have seen in the past few weeks, this isn't much of a surprise though.  I should be feeling miserable.  I am needing a lot of extra medications to keep myself out of the hospital again though so I'm quickly depleting my current supply of prescription medications.

Assuming they did not find any leukemias nor cancers and we are still only dealing with my incurable rare disease (Systemic Mastocytosis), we might be able to adjust my medications a bit to help relieve some of my problems.  I have done some additional research and have adjusted my medications on my own again with some positive results.  Unfortunately, I am now beginning to get low on some of these medications since I have been taking higher doses for so long.  I need to get the approval of my oncologist and have her change my prescription a bit.  I'm hoping this will stabilize my health a bit and be a more positive long term treatment.  Again, this is assuming they didn't find something more dire in my bone marrow biopsy.  

On the positive side, the site of the bone marrow biopsy is finally feeling tolerable.  We're at the three week point since my biopsy so that isn't too bad of a recovery period.  Actually, I probably would have been feeling significantly better a week or so ago but I fell on my biopsy site while walking the snowblower backwards.  That really set me back quite a bit as far as the pain is concerned.  The biopsy site is feeling pretty close to normal now other than occasional twinges of pain.  These twinges are deep and painful though when they do occur!

This ongoing furnace problem is definitely negatively impacting my health too.  Any physical stressors are a problem (extreme temperatures, having to push my body to accomplish something, etc)...  any emotional stressors are a problem (constantly listening closely to the sound of the malfunctioning furnace, waking up to a freezing cold house knowing the furnace failed again, etc)...  diesel fuel fumes are a big problem...  losing sleep is a big problem...  so this furnace issue has not been doing my exceptionally lousy health any favors.  I can't wait until they finally fix this old furnace so I can get some much needed rest and calm my nerves and frustration level a bit.  I feel like this furnace problem is making my health far worse than it should be.

I'll close this blog entry with a photo that I had processed yesterday morning.  I shot this photo a few weeks ago when I was testing each of my cameras for sensitivity in the infrared wavelengths.  I shot it using my Fuji S100FS and I shot it in color.  I usually convert all infrared imagery to monochrome but this one was different and still had some visible light mixed in with all the infrared light.  Since I shot it in color and in a wavelength that actually is in the "near-infrared" range, I captured a little bit of visible light too.  This makes for a distinctive infrared look.  I'm not sure it is my preferred way to image in infrared but it is interesting.  

Hopefully our furnace will be fixed tomorrow.  I'm not going to be too happy if we have to wait another day or two for more parts....  yet again...