It's been way too long

It's the first day of spring 2015 and I can't believe that Nov. 10th was my last post.  So much has happened that I can't even begin to remember everything.  After making it back from Salt Lake, I was getting ready for the tests and things that they wanted me to have on day 100 - which would have been about January 26th +/-.  I was pretty weak for a little while and wasn't much help around the house for the first few weeks, I had been let out and sent home before they really wanted to, but in their words, they would rather I be down here being with family, friends and caregivers for Patty, rather than being alone in a hotel room in Salt Lake - they were probably right about that.

Anyway, we had a pretty quiet Thanksgiving, I think we had "Bobby" sandwiches patterned after Capriotti's which is a turkey dinner in a roll.  I was still fighting some nausea, so I wasn't able to really enjoy a lot of my pumpkin pies, but I struggled through and ate them anyway.  As December came on, I was doing a little better all the time and we were looking forward to Christmas, it was Holden's second one, but it would be his first one to have a little clue about what was going on.  We had a very good time with the family during the holidays and we enjoyed it very much.  The New Year came without much celebration, I think we made it until about 10:00 and caught a live shot of somewhere on one of the Spanish stations and then went to bed.

I had seen Dr. Te a couple of times and had given some more blood to check on how everything was going after the transplant.  The blood tests all looked pretty good and Dr. Te was pleased.  So January 26th came and went, it wasn't until near the end of February that I got the 100 day tests - at about 125+/- - I had extensive blood tests, a pulmonary test to see about my lung capacity and a bunch of xrays of chest and full body.  The results were all good, So after the tests I started on my Pomalyst again for maintenance, I'm on the 4mg dose, the same one as before the transplant,  I guess the drug is new enough that there really isn't a "maintenance" protocol in place, So I started with the 4mg, but hopeful that after a few months we can drop to a lower mg doseage to hopefully minimize the side effects.

Unfortunately during the past 2-3 months, the Squeama Cell Carsonoma (spelling?) on my head has come back and I am scheduled for a CT Scan and PET Scan next Tuesday to see the extents of where it is and make sure it hasn't migrated to other parts of my body.  More to come on this after I know more.

Now to address the Elephant in the room - in other words the condition of my dear wife Patty.  We had arranged for 24/7 coverage for her while I was in Salt Lake, I am very thankful for family, friends and her caregivers, especially Cora during that time.  When I got home everyone helped out a lot because it was several weeks before I was able to be much help at all.  For Patty, living with MSA (Multiple Systems Atrophy) is a terrible, terrible thing.  It's not a lot of fun for her caregivers either, but for her it is really terrible, sometimes we joke about the "box of chocolates" from Forrest Gump, because none of us, including Patty really know what to expect each day and sometimes each hour or two.  Her blood pressure is a constantly changing challenge for all of us, it can be 160/90 and then 20-30 minutes later it can be 90/60 and she is passing out on us regularly.  She tries very hard to be as independent as she can be, but it's getting harder for her.  Just imagine how it would be to be in a full body cast down to your fingers, with some joints, but with weights attached pulling against your normal movements.  Then imagine a small line in your mouth dripping a small but steady stream of liquid into your mouth, then imagine your insides rebelling and refusing to perform normal body functions that the rest of us take for granted.  And all the while being under some level of sedation - not on purpose.  It is not fun to be her.  She is the strongest person that I know, but this rotten stuff is more than anyone should have to endure.  We try to make her as comfortable as possible, but it is usually a moving target.  Just when we think we are addressing her needs, they change.

I will post again soon, Thank you all for your prayers, concerns and help.  Until next time.