Life, Love and Finances.

As I lay down, reflecting on whatever comes to mind, I sit here and think, Christmas is only 4 days away and yet it just doesn’t feel like Christmas.  Part of it is the mild “Winter” we’ve been having and part of it is that days just seem to be flying by and even some part of it is that I’m done with school and being on break just seems to make it “official”.. But another huge part of it is the events of my family lately.

I’ve never been blessed to have a huge family, and the “little” family that I have are fighting their battle against a horrific disease.. During this time of year, or any holidays for that matter, it eats me inside and out.  Sometimes I wish I had more family to be surrounded by them and other times I take solace in the loneliness and quiet.

Today, while at the doctors for Frannie, we received some disheartening news.  Only 2 days ago, I got news about my father’s condition.  Either story isn’t so “warm” and “holiday spirited”….

As most of my friends know (but if you do not, I give you a summary with new information along the way), my Dad is battling his kidney cancer that had come back from a 5 year remission in 2009 (originally diagnosed in 2004).  In 2009 it had come back and ate away so much of his femur bone (thigh) that they had to put a steel “nail” in through the bone for support.  He had done radiation (10 treatments) and chemo (pill form) for quite some time, with little side effects.  However, he was supposed to have a follow up in November/December of 2010 when Frannie was in the ICU at Duke and because I couldn’t take him he missed that appointment.  He didn’t go for that follow up until I got everything caught up with Frannie’s transition to Rochester NY from Raleigh NC, sometime in March or April.  Although you may think, how horrible of me to do that, he was agreeing and telling me that I needed to take care of Frannie first on top of school and whatnot.  When we finally went to that appointment, the doctor had said it looked about the same to what it did the last time and since he hadn’t taken chemo in 4-6 months, maybe he didn’t have to and would be fine.  I shrugged this off because I believed him and figured before the next doctors appointment, I’d request/switch doctors and get another opinion (which would’ve been another few months).  Fast forward to August 25th 2011 (shortly before a scheduled visit) we went to the Emergency Room for my Dad and found out the cancer had done some more damage to Dad’s leg.  He now was getting 10 more radiation treatments while in the hospital and plans to go to a Skilled Nursing Facility for physical therapy were in place.  I had to fight/get him placed for a third time in four years to get him into a Skilled Nursing Facility (SNF), but only this time I knew it’d be harder because I specifically wanted him to get into the same facility Frannie is at.  After moving from one floor to another in the hospital, that was like starting over.  New social worker, new doctors, and the process starts from square one.  How frustrating.  But this was a blessing in disguise (even though I didn’t know it at the time).  So after having been turned down by the SNF of choice on the previous floor, the social worker (new floor) applied my Dad to that same SNF and surprisingly he was accepted into the facility.  Having Fran and Dad at the same place would be both beneficial for the both of them and myself..  Something finally had gone my way, for once!  It was shocking!  A bit of good karma, I’d say!  Well just a couple of weeks ago, a visit with my Dad’s cancer doctor had told us that now, not only is the cancer where it was last known but it was also in 5 other places.  And my Dad was having adverse side effects from the chemo drug that he had never had before (and he’s always been prescribed the same chemotherapy drug).

This brings us to my sister, Fran.  She’s a fighter and since Day 1, I’ve had faith that she can beat the odds..  I have hope but still don’t forget to be realistic.  It’s tough to swallow sometimes when I really think about her, but I try to think, “just maybe she’ll be the one that will be used as an example.”  Having been diagnosed with Stage 4 brain cancer last year, and undergoing surgery just days after Thanksgiving 2010, she’s had a tough road and one that I don’t wish upon anyone.  Although I’d like to think that part of the reason her journey has been made just a tad “easier” is because of me and my advocacy for her, but I won’t take any credit that isn’t due.  She’s the real hero in this journey, not me.  And I often wonder these days, what my Mom would think of Frannie and the fight she’s put up against it, considering my Mom was the strongest woman and best mother anyone could’ve asked for.  Just a recap: after Thanksgiving, Frannie had surgery and was in the ICU for I’d say 3 or 4 weeks.  Then was transferred from Duke to DRI for rehab but had a setback upon arrival it was discovered that she had a blood clot and would need to have that treated before she underwent physical therapy.  On December 30th, she was transported to Rochester NY via a medical flight and went through a rigorous brain rehab program for a few months, and began her 30 radiation treatments and chemotherapy (pill form).  She was then dumped to an ER on a Friday, and after having being told that she was dying of a blood infection I arrived to find that the doctors were unsure why she was discharged and sent when nothing was really wrong..  So instead she was admitted rather than returned to previous facility and spent a good month or so in the hospital.  I then had to fight some nursing facilities which at the time were told to me as the ONLY option she had to go to, but those fights ended in hitting a dead end.  And randomly she had been accepted by one, which is the same one she’s still at today.  She was in their PT, ST, OT program for a brief period of time but then was removed after showing no more signs of progress.  A lot of people have fallen in love with Frannie and her wonderful personality she still has through all of this, her ability to smile and laugh and still be the Frannie that I know.  Shortly after my birthday in August, she then lost the ability to speak and seemed to be having a rapid decline.  Nurses at the SNF were giving her “a matter of time” and had suggested to me to consider Palliative Care.. I didn’t want to accept that as an option, it seemed too early.  It seemed too rushed.  Either I wasn’t ready to let God have Frannie or I didn’t think Frannie was ready to give up just yet..  So after spending all day that day with her, crying/wondering what life would be like without my sister, I asked to have her sent to the hospital.  What made that decision justified was in just two hours, from 3-5pm, I was gone to eat with Meghan and bring my Dad up to the SNF to see Frannie, in that time period Fran lost the use of her right arm.  It seemed like symptoms of a stroke but it wasn’t.  It was merely swelling of the brain from the tumor..  After arriving in the Trauma unit of the ER and given a massive dose of steroids and a dose of Manitol, all to reduce the swelling, and spending a week in the ICU, Fran was actually the best she’s ever been through this whole journey.  She was talking, saying words she never have said, then upon moving to a normal floor, actually had walked for the first time in MONTHS!!  There was hope.  I was actually thinking things were starting to look up.  As best as they could be considering the situation.  She was calling me twice a day.  I felt like I had my sister “back” and maybe I’d be able to begin bringing her home again for visits on the weekend and we’d get that time together.  After going back to the SNF, things went back to the “norm”.  She couldn’t walk because the SNF wasn’t so pushy like the hospital was to get her walking..  And although she was still talking like she had been, I was wishing she’d be walking more and continuing on that but I knew it was unsafe to have her walk without the help and guidance of a therapist.  Months went by and the SNF still wouldn’t do anything because she wasn’t a PT patient anymore.  Then we had a MRI a few months ago.  There was great news, the chemo IV drug was actually decreasing the tumor in her brain and there was a significant change.  She went back in the PT program, but didn’t succeed according to health insurance “progress” and was booted.  I gave the SNF “hell” for booting her out of the PT (physical therapy) program too soon and then she got moved from the therapy floor to the “long term” side..  Although she was on the therapy floor from admit date until this point, NOW all of a sudden it was a problem.. Seemed sketchy to me, if you ask me.  But I can’t question it.  I can’t change it.  Just have to go with it and hope for the best.

Then came the news just today.. Frannie’s doctor came in to the room not as exuberant as usual.  It seemed something was up.  Asked us how she was, how I was, etc..  Then started with the results of the MRI.  It seems as though the tumor has “increased in size”.  This time he wouldn’t show me the MRI though.  Not sure if that’s bad or just because he had a busy day of appointments lined up.  His recommendation is to do 3 more treatments (including the one scheduled right after this conversation) and then do another MRI and if there is still more progression/increase of the tumor, to cease treatments.

It seemed as though my hope going into the appointment was gone, fizzled out through the door when the doctor shut it when he came in.  A pit in my stomach just grew, almost to the point I felt like I was going to get sick..  But I still had to hold it together because I had to take her over to her treatment at the Infusion Center.  It’s only 4 days till Christmas, and this is the news I get?!

This brings me to my reflection.. My reflection of the recent events of my family and their health and well-being and the holidays…  This Christmas, I can be thankful for one thing: family.

It’s going to be difficult to keep my head up, as anyone who has lost someone close to them, the holidays are always tough to maintain strength but I will for the both of them.  Christmas dinner will be at my house, which is when I will be surrounded by great people with Meghan and her family and then I will duck out to bring dinner and presents to my Dad and Sister at the SNF and hope that they enjoy the time together too on Christmas day.

It’s tough to swallow the news of today received from Frannie’s doctor with Christmas just around the corner but it does help to put things in perspective of what’s really important this time of year.  Our friends, family and loved ones.  And if you’re luckier than myself to have those around you that you care about, make sure you tell them.  If you don’t do it for yourself, do it for me.  Reach out to a friend you haven’t talked to to tell them you are thinking about them and wish them a Merry Christmas (or Happy Holidays).  You never know when you won’t be able to get that chance and wish you would’ve said more when you had the chance.  If your family member asks you to go have fun or join them on an errand or spending time, get off your xbox/computer/couch and go spend that time with them.  As I get older, I just wish that my sister hadn’t moved away or we would have that chance now to go out or talk about our adult lives and now it makes me feel like I had missed opportunities with her when I was younger.  And that, will haunt me forever..

No matter how “small” of a family I’ve had through my life, I’m glad I have the family I have.  It’s made me who I am and for that I would never want that to change.  I look forward to the family I will have and although my future child(ren) will never get to meet their Grandma (my Mom) or their Aunt (my sister) and they may or may not get to meet their Grandpa (my Dad), I hope that the stories I share when they’re older about those people will show them the kind of people they were.  How each one of them taught me something different about myself and life in general.  I know that this could be my last Christmas with my sister (I always have hope for more, but there may not be) and I will cherish these moments that I get with her for the rest of my life..