Get Comfortable

I’ve got a lot to say tonight, so go fill up your coffee cup or something and get comfortable.  The reason so many things have built up and now need to be blurted out in one big message is that my computer quit on me.  One morning last week I turned it on and all I could get was the blue error screen, better known as the blue screen of death.  I could not even boot the computer into safe mode.  I have tried several remedies and nothing is working.  I don’t have any money to take it to a local computer tech, so I keep trying to research options I can attempt myself.  I did get a kind offer from a friend who told me I can mail him the hard drive and he could at least try to recover the files stored in there.  I will probably try removing the drive tomorrow so I can send it off to him.  For now, I am using my old desktop computer.  It feels very restricting to have to work in one place on a desktop.  I have become very comfortable with the freedom of a laptop, and it has been cold the past few days, so going into the chilly basement to sit here alone and type has not been an appealing idea.   Anyway, that is why I have not posted in a few days. 

I wish I had posted about a dream I had last week.  I rarely have dreams when I sleep, at least none that I remember the next day, but either Wednesday or Thursday night of last week I had a very vivid dream that we went to see the doctor on the coming Monday (today) and she told us that the biopsy was inconclusive and they would have to do the procedure again.  That is the exact dream I had…short, simple and to the point.

Today, we were called by the doctors assistant around 10:00 AM and she said the doctor was ready to go over the biopsy results and we should come into the hospital right then, as soon as we could get there.  So we scrambled Dominic into his shoes and jacket and were out the door.  We drove the 40 minutes to the hospital, navigated the giant parking structure, and went to the lab first so they could draw blood for a test (we were instructed to do this before checking in to speak with the doctor).  Then we waited an hour for the doctor to be ready and she finally walked in and although she did not use the word “inconclusive” which was very clearly in my dream, she did tell us that the sample they got from the biopsy was non-diagnostic and they could draw no conclusions from it.  Her recommendation…do another biopsy!  Holy crap! 

I don’t know what was more shocking to me, the fact that treatment of my cancer has been at a go-nowhere standstill for almost two full months, and will now remain that way past the two month mark, or that I accurately dreamed of this exact scenario a few days before.  So, now the plan is to perform a mediastinoscopy, which she described as a more invasive procedure, but one that will take a larger portion of the tumor (which I have recently learned is actually a very enlarged lymph node) and definitely provide them with a diagnostic sample.   If you want to know how a mediastinoscopy is performed, click here.   As of today, the appointment for that procedure has not been determined, but I am hoping it will be this week.  I really want to get this thing moving. 

I have had a lot of up and down emotions about all of this over the past two weeks.  The biggest part is that I continue to have a feeling that I have lost control of my entire life and this fact or perception has been causing me a lot of stress.  I have written about my financial worries, and I don’t want to go down that road again tonight.  But another troublesome thing is that I am very frustrated with the abrupt start and stop way that the process has been unfolding and the lack of any predictability.  It started with my first appointment in Michigan on September 10 when I thought I was going to get radiation to the tumor.   That is what the appointment was for, and the doctor was so sure that we would follow that treatment plan that they got me completely prepped for radiation and calibrated their machine to my body…and then somebody, or some group suggested we consider an alternative.  So we revved up, got ready for radiation and then stopped.  The alternative approach made sense, so we sought out the best doctors available in Georgia to do it and they agreed with the assessment so we hurried to Emory and went right in expecting to have something done, and then they wanted to pause to do this biopsy.  Okay, another slam on the brakes before treating the disease, but again, it made sense.  So now a week has passed since the biopsy and we were so ready to find out who or what the real enemy is and how it needs to be fought, but again, the brakes have to be applied as we go for another biopsy.  And I don’t disagree with any of the theory behind why these things are happening.  At each stage, we seem to be encountering smart doctors who are taking an ever broadening look at the whole spectrum of the disease and developing a more and more comprehensive plan to fight.  I just wish that we could somehow know what kind of life to expect more than two or three days in advance.  When I arrived in Atlanta on October 2, I was mentally bracing to be entering the hospital for a week of body wracking chemotherapy within just a few days.  And with the lack of information on when to expect certain things, I have been living for three weeks with the feeling that I could be called into the hospital for that long treatment literally any day.  So, I am not planning to be anywhere, or making commitments to do anything, or attempting any work projects because they have kept me thinking that I am two or three days away from being attached to an IV drip.  But here I am three weeks later, with little to show for all this time, and still not knowing what to expect.  And it does not just affect me.  Angela has to live this way, and my parents who are all in to help out and support us are stuck dealing with these unknowns.  I feel terrible asking them to be away from their home and their life for these days where I wake up and live that 24 hours as a normal person.  All of last week, we kept wondering if it would be safe to make any plans for the weekend.  It’s a beautiful time of year to be outside and enjoying the fall weather, but I don’t want to get my hopes up with visions of playing outside with Dominic, to just get called into the hospital.  And now I have to go through it all again this week. 

I have more I want to write about but most of it is just more venting and anger and frustration.  And that is no fun.

We did do something important today that was actually very enjoyable.  Angela suggested that we get a family photo done before my chemo starts so that we can preserve a nice image of us all together before I start to look like a sick ravaged person.  But again, we have no money for things like that so she posted a request and told our story on a website called www.wishuponahero.com and a local photographer here in Roswell offered to be her hero by donating his time and work to do our family photo.  His name is Paul Wendl and his website is www.paulwendl.com.   He is a very experienced photography and runs his studio from his home.  The unique thing about his studio at home is that he has spent years heavily landscaping his backyard into a series of pathways, arches, flowing rivers, waterfalls, koi ponds, benches and all kinds of other visual props that not only make his yard look great, but gives him a lot of options for beautiful outdoor photos and that is exactly what we did today.  Dominic was looking super handsome as usual and his Mommy had her prettiest smile on, so I am very anxious to see these pictures.  Thank you very much Paul.

Well, that is it for tonight.  I am going back to my laptop to try one more fix.  If anyone out there has an idea how I can get it back from a state where it does not even boot into safe mode Windows, I would love to hear it.