The first part of this post was written over a year and half ago, and hidden on my private drive until today, when I decided to write a followup. Scroll further down for today's update.
9/9/14
Almost 4 months ago I was diagnosed with Cancer. Yep, the big C!! Scary sounding and very unsettling. But over the last 4 months I have learned as
much as I can, seen a few doctors, gotten lots of tests, (and given a lot of blood!) and here I am. I have Cancer. And the second and now third opinions agree
so there is really no doubting it. But
there is nothing they are going to do about it.
For now. And I feel fine. For now.
I may be fine, it may or may not progress, watch and wait
they say. But I may not be fine. And no one can really tell me for sure. The markers are all fairly good (except that
I have CANCER!!) So I wait. And watch.
And worry. And occasionally freak
out.
I have told some people.
First my immediate family… Greg, kids, Mom, our siblings. Then extended family, cousins and aunts and
uncles and such. And a couple of good
friends. But not too many people at
work, trying to keep it from Management.
I don’t really want anyone but me deciding if they think I am capable of
doing the work or if I will be around. I
don’t want any assumptions to be made on my behalf. If I decide I don’t want to work anymore at
some point (due to medical/physical issues or I’m just ready) then I will let
them know in time for them to plan for my departure.
I’ve read a lot, and I will continue to read a lot. A lot of it is very scientific and over my
head (that’s why I need a good doctor!!), but what I do know is that there are continually
a lot of advances in the treatment of this disease, so there is some hope. But as of yet it is not curable. That doesn’t sound so good. The longer I can go before requiring
treatment, the better chance they will have better treatments available. And maybe even a cure some day. I will continue to have hope!!
The biggest issues for me right now are all the doctor
appointments, calls, insurance issues etc.
A real pain, especially because I can’t really take calls at work very
easily if I don’t want the whole world to hear. The joys of working in “cube land”. I can’t even begin to imagine how anyone who
is more sick, scared, uneducated or unsure can wade through all of this. I already messed up and ended up paying for a
vaccine that should have been covered because I didn’t follow the process correctly. At least I have the resources to pay it, but
what about those that don’t? It sure
brings to light how screwed up the system is.
And how much people have to deal with if they have a chronic illness.
It also makes me realize how much you really don’t know
about what another person may be going through or dealing with in life. Hey, cut people a little slack, maybe they
have Cancer. (Or something equally bad.) Or love someone who does.
Walking around with the C word is bad enough, but not
telling anyone and just carrying it as an emotional burden while pretending
everything is fine is no picnic either.
Even though I am not physically unwell.
And I want to be ok so I am good
with the pretending, but there are some times that I just want to tell people
“look I am having a bad day because I am worried about cancer, and nothing else
really seems that important to me!!” But
I look fine and am not undergoing any kind of treatment and don’t have any
ailments, so who would really understand?
I think any whining would get old pretty quickly. And I really am ok. I am happy, I feel well, I have the best
husband in the world, a great family that loves and supports me, and a good job
that has provided me with financial stability.
There isn’t a whole lot more to ask for.
5/17/16
So here we are 2 years later. Coincidentally, yesterday was my 2 year “cancerversary”,
or 2 years from the day I received my diagnosis, and I didn't even really think of it until today.
Some exciting things are happening. First of all, I still have not needed any treatment or felt unwell with my cancer, so that’s good! There are some things moving in the wrong direction though. My lymph nodes are getting bigger, but not yet concerning. My spleen is enlarged, as it was at diagnosis, but hard to tell if it is bigger or the same. The biggest concern is my platelet count, which has now dropped from being low at around 120 +/- 10, to 85 at my last check. That is heading for a concern area if it continues to drop, and would require treatment of some sort. Not sure whether it is within some normal variability or heading south fast. That has caused me some worry, but not a lot I can do about it, so keep getting it checked, and deal with whatever comes.
Some exciting things are happening. First of all, I still have not needed any treatment or felt unwell with my cancer, so that’s good! There are some things moving in the wrong direction though. My lymph nodes are getting bigger, but not yet concerning. My spleen is enlarged, as it was at diagnosis, but hard to tell if it is bigger or the same. The biggest concern is my platelet count, which has now dropped from being low at around 120 +/- 10, to 85 at my last check. That is heading for a concern area if it continues to drop, and would require treatment of some sort. Not sure whether it is within some normal variability or heading south fast. That has caused me some worry, but not a lot I can do about it, so keep getting it checked, and deal with whatever comes.
I have an appointment with the NIH on Jun 10th to
be screened to be part of the Natural History Study of CLL – for untreated
patients. Hopefully I will get in, but
either way it will be another chance to see how my platelets are doing in
between my normal appointments, and if they are ok I should get in. I would only get denied if I need treatment I
think. If I do get in it will give me another
team of specialists for consult should I ever require treatment, and help
finding an appropriate clinical trial if there is one. It helps research, and it doesn’t cost me anything
at all. We are also planning to turn it
into a nice Washington, DC weekend for our anniversary, so that’s good
regardless of the outcome.
And lastly, for the biggest news of all, I have accepted a
buyout at work and will be “retiring” on Aug 20th! I put
retiring in quotes because I feel more like I am just quitting, like I am not
old enough and have not worked long enough to earn the title of retiree. But I will have completed 27.5 years with Kodak/Kodak
Alaris after having spent 7 years in college and grad school, while raising
children, so it really isn’t too shabby.
And so I will be “Eating Dessert First” as I have now decided to refer
to it, after reading a recent article with that title, written by a fellow CLL
patient.
I am happy! Greg is
retiring too, on July 1. We head to
Sanibel that day for a week long family vacation. Then my last day of work is August 19, and on
August 20 we head to London for 3 nights in England and then a 12 night British
Isles cruise. We have also put a deposit
down on a condo rental in Kauai, Hawaii for 6.5 weeks in Feb/March 2017. So lots of fun to look forward to and
exciting times ahead! But still, I am at
least a little nervous. Nervous about
whether we will really have enough money to do what we want to do, whether
there will be enough to do, whether my health will allow us to do what we want
to do, etc… But what better to do than
to start living it and enjoy life to the fullest while we can. I am hopeful that the $ won’t be an
issue. We have a budget and if we stick
to it we will be fine. If it is looking
like we want to do more, which results in spending more, maybe I will need to
consider working some again. And that is
ok too, as long as it feels right at the time.
We can make it work by the choices we make. I like the idea of seeing how it goes and
dealing with whatever comes up. And
sleeping in more often!!
So there you have it, maybe I will write again before
another 2 years have passed.
