One is always frightened of the mess when it comes to paperwork, hospitals and insurance providers/Tricare. In my case, the fear is still there, yet with a case manager at Walter Reed facilitating my care and a case manager here at Johns Hopkins, the confusion that sometimes arises from a military to civilian hospital has been somewhat minimized. Here is the key though to making sure that if you have to be admitted to any hospital that you have a plan in place and what I mean by this is, having your own paperwork in place to facilitate paperwork and conversations. I can tell you that without my wife being by my side, handling paperwork, admissions/transplant/insurance offices, I would have already blown my lid.
Power of Attorneys, living wills and advanced directives should be in place before an extended hospital stay and for that matter, if you're a military family where the military member deploys, it should have already been in place. If not, the base legal office provides this service free of charge to military families. Extremely powerful tools that only take a couple of hours to accomplish!
Although we were prepared for an admission, chemotherapy, transplant, the emotional toll didn't quite strike me until the day after admission, my second day. Being awakened every four hours through the night for 'vitals' and then the onslaught of nurses, cancer team, and most of all seeing the other patients with their trees of liquid walking the hall. I have since found out that walking is good for us because of all the liquid that tends to swell ankles and feet. Speaking of liquid, I have never pee'd so much in my life, goodness gracious!
Day 2 (Saturday, 05 Jan)
After three attempts, an IV was started as a temporary fix to my scheduled surgical insertion of a Hickman Device.
If I was not admitted, my family and a few friends were going to go out for some sushi--my wife, son and good friend brought sushi, and my favorite cake, red velvet to celebrate my forthcoming 40th birthday. The fear and worry is settling in once everyone leaves--only my son left here, decided to stay the night in my room. We live over 1.5 hours from Johns Hopkins, so my bride stays across the street and my son and mother-in-law arrive on Friday's to stay the weekend, or at least that is the plan!
Day 3 (Sunday, 06 Jan)
Was informed that I will have the Hickman Device surgery and chemotherapy to begin on 07 Jan (my 40th birthday). Hard to swallow that we are here, anxiety is setting in. Almost feels like another Sunday, except in a hospital.
Day 4 (Monday, 07 Jan)
I was awakened by an extremely wonderful staff of nurses and techs at 0630 with balloons, signs and a wonderful calendar with a hand drawn South Carolina Gamecocks football in honor of my 40th Birthday! I think it was to get me in good spirits for what was to come today. Minutes later a tech came in to let me know that my chariot (stretcher) had arrived for my surgery to install a Hickman device. I was all about that little doohickey because I absolutely abhor needles--this device is surgically implanted in the chest area to eliminate all the needle sticks.
Chemotherapy began around noon with a major dose taking an hour and one that drips for 24 hours--this process will continue until Wednesday. Also, two bags of blood transfused into my body--thank you to whoever donated that blood! Put on a liquid diet! I shed some tears with my bride, held her hand, and she reassured me that we will make it through this. It has definitely rocked our world and ate away at our core, but we remain vigilant and strong as a team and love like we never have before.
Day 5 (Tuesday, 08 Jan)
Day 2 of chemotherapy and my only complaints are that I have to eat liquid food and have this headache that doesn't seem to go away. Nurses suggested that I drink coffee because I may have caffeine withdrawals--I'm from the South where sweet tea and good 'ole cup or three of morning Joe keeps us going, I was all in. It worked! By afternoon, I was beginning to feel sluggish and exhausted, napping most of the afternoon away after the noon time chemotherapy. I have to say that the nurses, techs, doctors, staff are absolutely wonderful! My bride drove back to NOVA for an appointment tomorrow.
Day 6 (Wednesday, 09 Jan)
The headache is still bothering me but a coffee and some Vitamin I worked it out to a level that I could manage. My diet has changed, things don't taste quite the same and my sluggishness has increased a tad. Embedded here at Johns Hopkins is a Navy Social Worker by the name of Patrick, who is completing a portion of his training--absolutely a wonderful asset to the team here and want to thank him for listening to me today.
I have to say, I couldn't be any more happier that my bride made it back and was able to obtain a suite/room across the street at the Hackerman-Patz Patient and Family Pavilion. She comes and goes as she pleases just as if she were walking to a neighbors home. Only a hospital stay can get me to watch Kevin Costner movies back to back, "For Love of the Game," "The Guardian" and "this great movie." I can't believe how much blood (daily) they extract from me... my nurse commented, "we give you two bags of blood only to get them back!" Tomorrow, I go on chemo break for 4 days and Friday I can have some solid food!
The journey thus far has made me reflect on the happiest moments and memories in my life, another tool in helping me get through this so that I can create many more moments and memories. Many props to my wife, who remains strong, by my side, and still wants to talk about the bills. "I don't see my life without her in it."