What to Report?

I guess deciding what to make the topic sometimes drives the blog.  Obviously its about my battle with the Cancer and its affect on me and the rest of the family.  I haven't wanted to speak on their behalf as I can only know about how the ups and downs and daily grind that hits me.  Sometimes its not so bad to be the one going through it, at least you can provide a perspective that may have the most clarity.  What I can say is that my immediate family's support has been incredibly reassuring.  And, the communication I receive every day is beyond the scope I every thought could be shared, and it is huge, believe me.  I just wish I had time to personally respond to all of it.  If I haven't posted on the blog, don't assume the worst, there just may not be much to report, a ton of this recovery is waiting.  And, in a lot of cases, the waiting and recovery isn't fun and I don't have a lot of energy for calls to return or emails to write.

Or, if I do have the energy, it can be comical to watch me type on the painkillers or Ativan (better than Xanex Melissa).  Mind wants to say one thing, fingers can't find the keys (last weeks post took 11 hours to write and refine).  That, combined with no sleep, can keep it interesting for all of us.  Got to love the "Edit" features...

So, to answer the biggest question, "yes, I am still in the hospital...  and I'm starting to feel like the veteran around here!"

Amazing to me is that I haven't had solid food in over 4+ weeks.  Sure, I'm getting supplemented, but this is nuts.  It gets to the point that your NOT hungry, you just get cravings for various foods, knowing full well you can't have them and they will probably destroy your insides.  But, it is fun to crave.  You might think that having the Food Network as a "top channel" would make it a tough watch, but the nurses swear that's what we (the BMT patients) all watch the most.  Its not what they cook that gets my attention, its thinking about what I could cook if I had the access to their budgets, help, pantry and cleaning crew...  you crave are the easy things...

Inspiring Taco Video

Note to McDonald's, we don't really believe you created a personal oatmeal for us, not a chance.  No one craves oatmeal, nice try though.

The hospital routine, which has been covered, can become completely mundane or insane, so I have to make the routine have some sort of fun.  Of course there was Helga, who made it easy on me not to like.  Letting the other characters show themselves has been somewhat entertaining.  Known for my patience, ahem, it has been classifying their genre that makes it funny (or annoying).

The "cast" would make Shakespeare proud.  Because I am the youngest on the BMT floor, I think there is a sense that I need some of the mothering that has eluded me for all these years...  the 3rd shift nurses tend to be the older ones who have some identification with the night and how it all works.  The day shift seems to be the younger crew.  Both are driven and confident, but by different motivations.  Any reception shown for the nurturing effect drives it further, eliciting, for example, why Canada (from a Canadian perspective, of course) has better government products that are unique, or TV stations that are better programming, and how time spent in Vancouver, BC is probably superior to Seattle (I got lost somewhere in there).  Somehow, the whole "eh" thing makes it all sound better.  (I am surprised at that there are employees who commute across the border daily, has to be a pain).

The Doctors, with all their credentials, seem to have all the stereotypes covered (as if they adapt withing their own subset):

• The academically superior leader
• The impressed with their bedside manor and dictation skills to their assistant (currently)
• The well rounded
• And last... the "I'm Keith Hernandez"complex (its has to be there in all of them a little)

I'm due for a new Dr. and rounds team Monday so we'll see who that brings into the fray.

When in doubt, people watch, right?  The hospital is starting to look like a top destination for watching, a list that includes:  amusement parks, airports (ATL Hartsfield is the king), and now this?  Combine that the private Karmanos Cancer Center is attached and shares some facilities with the more "city" oriented Harper Hospital, so the mix is quit eclectic.

To answer the "what to report?" the struggle is how often and of the "what."  In fairness, I want to keep the mood on an even keel, but when I go through a few days non posting or tough hospital days, it isn't necesarily alarms out there, because I can't answer all the emails that are asking if everything is OK.  The reality is that its all a new sick adventure and sometimes they are OK and sometimes not, and we'll make sure everyone is in the loop as we do...

Even for some of the recent diagnosis, the protocol is for the Doctor team is to play trial and error with medications and isolate where and what they believe is causing pain, discomfort, etc...  To get where we are today (again, much better that I have been in the last week or so), we went through the CT scans, an X ray, and don't forget to eliminate food AND water (except for taking pills).

GVHD  had taken over and we all believe it is now under some control, but as we've been taught, it can show itself very quickly and change direction.  They feel the GVHD has been reduced to a much lessor stage than seen last week.  We are working to have the Doctors help us understand how they are working with the various issues (diarrhea, additional gut pain, skin rashes, swelling, etc...) and we want to know how to ask the right questions, otherwise our frustration sets in as well.

 (funny note on using the spell check and "GVHD," it wants to suggest "JIHAD"...  not a bad comparison)

We move into this weekend with positive outlook for next, more recovery, but positive, even just getting to drink broth is a step forward.  Keep the thoughts and emails and comments coming, but understand that the energy level is a bitch sometimes and tough to respond quickly, but I'll try when I have the energy, because I do like to do it. We're not counting on heading home next week, just making sure we are in the best shape once I am there.