Heading to UCLA for Consult

On March 2-3, 2011, I will be heading to the UCLA Center For Esophageal Disorders - Los Angeles, CA for my first consult.  After the PET/CAT Scan, I was told the tumor in my throat is 10-inches long and not the 5-inches first reported.  My life span is guessed to be 2-4 months, maybe 6 months on the outside.  If the surgeons believe they are able to do surgery on such a large tumor, by removing (resection) of my esophagus, it will not cure the cancer, but it may extend my life to one year or (if very lucky) two years at the outside.  I desperately need that time to make all the arrangements for child care, letters to my son for the important events in his life, caretaking for my 80-year-old father who has dementia, and my own good-byes and final arrangements with my immediate family.  Even though I need and relish the extra time, I also resent having to use it for End Planning.  And then I feel selfish because I resent using it for arrangements because the arrangements are so my family can have an easier time when I am gone.

I’ll be traveling (driving) down to LA for the consult on Wednesday, March 2, along with my oldest son, his wife and my grandson.  The consult is set for early Thursday morning, March 3.  I am so nervous about it.  And the expenses are eating me up.  My husband just started a part-time, on call, job, and cannot leave it or be unavailable for call ins, so he cannot go with me.  The job is so important right now and we cannot do anything to jeopardize it or cause him to lose it or for them to stop calling him in.  We’ve been job hunting for almost two years, and his unemployment runs out in May.  He has to have this job in order to care for our two-year-old grandson, who lives with us. 

I was unable to arrange a reliable sitter for the consult days, so my grandson will go with us.  My son will accompany me to the consult appointment while my daughter-in-law watches our grandson at the motel. The expenses just for this trip, just for the consult to see if they might do the surgery is:  Gas $150 for three tanks; meals $150, estimated at a total of $75 a day cause we will eat cheap; motel room $125, because it’s close to UCLA and we want to establish a place for my support person during the surgery; one insurance Cobra payment paid ahead $384.00, because my insurance is trying real hard to get me kicked off before the surgery; and my co-pay for the visit $50.  That’s $859.00 for just the two day trip for the consult.  If I am selected for surgery, it will be a four day stay at the motel and four days of meals for my same family accompanying me with my grandson toted along for just the first four days while I am in surgery and recovery in ICU.  That part of the trip will cost $1025.00 – conservatively, eating very cheap.  The remainder of the two to four weeks I am recovering and learning to eat again, my husband will come visit me twice, staying overnight once, and then coming to pick me up on the second trip.  We’re figuring his two trips, with one person accompanying him to watch the grandson, will be $475.00 for each, totaling $950.00.  For just this one month, our expenses will be an additional $2834.00 – conservatively.  I don’t know how we are going to make it.  I guess we’ll borrow and beg from everyone in the family – most of which are as broke and unemployed as we are – and pray for the best outcome.

If all goes well, and the doctors say they can and will do the surgery – then the surgery will probably be scheduled right away, with days of the consult.