It has been almost a year since I last
posted here... The biggest reason why I haven't is quite simply Time.
My time this last year seems to have gone by so much faster than than
the years before it.
Well, since the weather has turned cold
and snowy, I have no more excuses not to make a post. This past year
has been exciting in a lot of ways and exhausting in others. I got
married officially to Lori at the beginning of this month. Planning
that, is a credit to her and her cooking skills, since we tried to
keep our expenses under 1K.. We didn't quite make it, but it was
worth it. We planned it as a surprise wedding for my family because
it is so hard to get all my globe trotting siblings in one place.
They were already going to be in town for my cousins wedding, and we
did not want to impose on their day. We also did not want my family
to plan for the added stress of having 2 weddings in 2 days, so we
did not tell anyone. Lori and I planned out the food, Lori cooked it
all summer long, and froze it so all we had to do is re-heat it. It
went off a little later than planned but all in all, it was a great
day. I'm happy I married the most unique person on the planet.
We also have had some good news with
our journey. Lori and I now know more about the relationship between
Lori's pheochromocytoma/paraganglioma and polycythemia. I can't get
specific with the science just yet, as I have been sworn to secrecy.
I can say that Lori's tumors are still stable as opposed to being
aggressive. In terms of treatment, there is none just yet, but with
this type of cancer, you have to know the Why and the How of the
symptoms/tumors before you can know the How and What of the
treatment.
Most of this year has been spent in one
four places; work, home, the car, and lastly, doctor offices.
The first three are pretty normal for most people, the fourth is
not. Last year we put over 7500+ miles on our little Kia Rio5 just in
doctor visits. This year, while we haven't totaled it up yet, has to
be more. More trips to NIH, and more trips to the Cleveland Clinic
means so much less time for all the other important things in life.Lori finally got her surgical hernia and the complex regional pain syndrome taken care of so that was a relief. Both her thumbs now work as they should. Now if we could get Lori's bone pain under control so she can have a better outlook on the day to day grind of being a patient. But we will take that one day at a time just as we have everything else.
My job requires patience, sometimes extreme patience, but in context of dealing with the medical establishment and the lack of overall knowledge about pheo/para within the general population of the medical community; my job is a cakewalk. To say I have generated a mistrust and a bullshit detector for doctors in general, would be an understatement. Not all doctors fit into this, but I have a high standard that very few meet. I have generated my opinion as a result of this journey and my perception is my reality but since this was meant to be a positive post this close to Thanksgiving, I'll stop the negativity here.
I am thankful for another year with my
now new bride, Lori. I'm thankful for my family (hers and mine, and
the few days we were almost all together). I'm also thankful for all
the new people that we have met as a result of this disease.
Especially those on the Facebook group, NIH and now tonight, a local
couple. My job most definitely. The three people I interact with at
work the most have to put up with my “two cents worth” on a daily
basis. That in and of itself is priceless to me.
I wish you all a healthy, happy, safe
holiday season.
