No One to Be There for Me

UCLA Plan Disappointments

My family is so spread out, most more than two hours away or several states away.  I have to make a trip to UCLA for March 2-3 for a surgery consult, followed by another trip about week later if I’m approved for surgery.  I had my older son and daughter-in-law lined up for the trip to the UCLA consult, to keep me awake while I drive and be company for me.  But as usual, they turned out to be terribly unreliable.  My son wanted access to my van to run around LA while we are there.  He is a poor driver and also lets his unlicensed wife drive the vehicles when in his possession.  I cannot afford problems that can cause, so I cancelled their accompaniment.  Now, I have to take my grandson with me to the consult, and we will go alone together with me taking him to the appointment in his stroller, because we cannot find day care and my husband cannot afford to miss work or be unavailable for work in his new on-call position. 

I'll be driving myself up and back to UCLA alone with my grandson, staying overnight one night to rest up for the drive back.  The following week for the beginning of my longer stay if the surgery is approved, will be a real nightmare.  I was hoping to take my older son and daughter-in-law with me, and the grandbaby, and have them watch him at the hotel for the first five days, while they alternated checking up on me and spending time with me in the hospital.  My doctor told me that they pretty much demand I have someone there to notify about the surgery outcome and talk to in case of death or complications, and to encourage and help me through the first couple days of recovery.  I counted on my older son for that, but it’s just not going to happen.  So, now we are stuck hoping my husband will be able to go to UCLA with me the following week when and if they schedule the surgery, and be able to stay two or three days, during surgery and after, but it's doubtful.  We cannot afford to jeopardize his brand new on-call job at all in Las Vegas’ bleak unemployment.

I considered, briefly, having my younger son, a new Marine taking Intel school training in Virginia, to leave school, fly to UCLA and spend four to five days with me, and pass on recovery information to the rest of the family.  He’s just 19 and the love of my life next to my husband.  But doing that could make him have to repeat his school, and I don’t want that.  He’s almost finished (April) and getting such good grades.  It’s one of the few things I look forward to without worry – that he will be taken care of for the next few years with no worries of income, medical, or housing.  My only back up for a person in the waiting room for surgery outcome is to have strangers (my son's ombudsman's parents from Miramar Base) sit in the waiting room and notify family of the results of the surgery.  All this really sucks but we do what we have to.  At this point, it is more important that my husband keep his new job and plan for caring for our grandson with it after I'm gone, than to have ready support through the surgery and first days following it – and that my youngest son is well provided for.  No one should have to decide between such things, but we do, and we have to make it work. 

March 2-3 is coming up fast.  Now, I get worry about whether my husband is adequately covering our child care problem for our grandson while I am gone in the hospital.  I get worry about whether lack of child care of some night causes my husband to get fired.  I get to worry about traveling alone without help to drive when I am exhausted.  I get to worry about whether the vehicle will travel well without breakdowns so I can get to the appointments on time.  I get to worry about expenses for these medical trips that we cannot really afford.  And “best of all” *sarcasm intended* I get to go through surgery alone and recovery alone or with complete strangers.  Wow!  I want to ask, “Can it get any worst?”  But I know it can, so I’ll just keep that question to myself.

For the surgery and recovery, I'll spend two weeks in UCLA (hopefully not any longer due to possible complications but I have been told complications can make it as long as six to eight weeks), then return home with a feeding tube and aftercare nurse (hopefully covered by our Cobra insurance).  I'll have the feeding tube for several months.  The surgery is not a cure at all.  It's just a time lengthening for the death date, giving me maybe a year instead of less than six months. 

The burden of all of this just causes me to crumble.  My father does not know about the cancer and cannot know about it, because his dementiated focus on it would literally drive me crazy and kill me off sooner.  So most of the time I have to hide what I do, telephone calls to doctors, chats with people, etc.  Also, I have a home in foreclosure with family members still living in the home.  I had to move to Vegas to take care of my mother and father, and to be closer to medical care, but if the mortgage company knows that, they will foreclose immediately on the my own home, making my son and daughter-in-law homeless.  My daughter-in-law has genetic breathing problems and struggles with bouts of pneumonia and other problems and needs a home right now.  They cannot afford to move and do not have anything lined up for when the house is gone.  More and more things for me to worry about.  They say stress and worry can kill you.  Maybe it has killed me.  I can’t help feeling selfish and wanting to say, “Please take care of me for a while.”  But it’s simply not an option.  So I just suck it up and move on.