Sad News

It is with great sadness that I write and tell you that Gerry passed away tonight. Gerry fought long and hard for life, right up to the last few minutes. He suffered the last few days and while it hurts to lose him, it was a blessing to see him in peace at last. I was alone with him, talking to him and holding his hand when he died. It gave me great comfort to have been with him at that time.

Once again I want to thank all of you for your continued love, support, prayers and comfort as we went through this ordeal. To those of you who knew Gerry, I know you will remember him with fond memories. While he could be trying at times, mostly he was a fun loving, caring, warm guy with a big heart. We shared 8 years together, 8 years that were fun and loving.

Thanks

I want to say a quick "thank you" to all of you who have taken the time to read my blog and those who also left comments, notably: Sarah, Heather, Donna S, Paula, Mo, Elizabeth, Alison and anyone else I may have missed. Your thoughts and soothing words are always helpful.
Jody

Hospice Time

After 10 days Gerry finished the MRSA IV antibiotics last Monday. He was getting them at the office of the doctor for infectious diseases. It took about 1 1/2 hours each day and I got to sit out front and knit.  Gerry was so weak one day that he had me take him in to the office in a wheelchair. That was the day he he suggested that we sign with hospice (we tried twice before but each time he changed his mind). I called while he was getting treatment and the nurse came that afternoon with the necessary papers. The next day an LPN came to assess Gerry and talk to me, and the day after that his assigned RN, Susan, came. Each one of them was so nice. Gerry, on the other hand wasn't... he wasn't nasty, he was just angry and each time he really didn't want to see the nurse but in the end he let them come in and take his vitals. He saw them each for 5 minutes... the rest of the time they spent with me, talking and filling out paperwork. By the afternoon of the second day we had received refills on his medications, oxygen, a wedge and egg crate for the bed, and a shower chair (he doesn't need it yet but it's here for when he does). They are all about making Gerry comfortable, and helping me. As of Tuesday I had decided NOT to leave him unless there was someone to stay with him. Mom came over and I used that as an opportunity to run to Publix. 

Gerry does not sleep a whole lot. He dozes on and off during the day but it's nowhere near the amount of sleeping he had been doing. He is up most of the night too. That wasn't good for me as lately he had been making a lot of noise, leaving the bedroom TV on or putting the living room TV volume up high. Two nights ago he went into the living room and I was able to sleep.

This morning when I woke he complained of shortness of breath. He had started using the O2 the night before so I set him up with it again. He was concerned about his arms - they are SO thin, and then said that maybe he should go to the hospital, as he thought he was going to die. I told him that it wasn't happening today (he was just scared - I think he finally hit the acceptance stage). I called Hospice and the nurse said she would come around 11 AM. In the meantime the social worker AND doctor called asking if they could come to meet us. I of course said yes. The SW came first and Gerry was asleep but he woke and spoke with her - he was like a lamb. She was very honest and open with him and while he doesn't open up his feelings he did share a little of his fears. The doctor was so nice and Gerry seemed to like him, too.  Nurse Susan came and was here for a few hours. She will return 2x week.

I have been pretty good up until now. But each day it gets harder emotionally to see Gerry going downhill. He is very thin (he lost over 10 lbs in the last week, and that was as of Tuesday. He eats next to nothing all day long. He hasn't been up to small talk in a long time. He can't bend down easily as his abdomen is large with tumors, so I have to help with dressing (which pretty much consists of boxers and sometimes a t-shirt). He can still shower, toilet and brush his teeth himself. He lays on the couch for awhile, then decides to go into bed. So I have to move the pillows, fan (he is always hot and/or perspiring), water, and now O2. After an hour he wants to go back on the couch.... time to move it all again. Sometimes I will help him out, go to the other room to begin doing something and I hear, "Honey - can you ____?"  I am not blaming him as I know he can't get comfortable AND needs a change of venue, but it sometimes is exasperating. Then I stop and think, "How selfish... he can't do things and for what I might want to be doing, it can wait. I will be alive to do whatever... and he won't!"

Another sign that he is seeing his fragility and mortality - he authorized me to give up our dogs. We have 4 - a dachshund and 3 maltese. Gerry loves these dogs as much or more than he loves me (it's ok, I love them, too). We really were nuts to take on 4 but now it's too much to deal with. They are wonderful dogs but, being small, they are barkers and bark at every one/thing that moves outside. If Gerry is lucky enough to fall asleep during the day it wakes him up, or just grates on his nerves (which are very thin). He has been yelling at them when they disturb him. He used to love for them to sit on his lap but he is so sick he can't take it and so there is no affection/attention to be given. I am worried, too, that if Gerry gets up and the dogs follow him, that he might trip over them and break something. Once I am on my own I would have had to give them up because I will not be able to afford their care AND I work 26 miles from home and will be gone for 10 or more hours each day. That surely isn't fair to them ( I can't even go two hours without peeing). I called Alison and she is going to help by contacting a maltese rescue organization. I am looking into one for my dachshund, too, with my good friend Melinda helping on that side. I know I will get through this but gee...doesn't life just SUCK sometimes?? 

Once Again The Hits Just Keep On Coming

I went to the oncologist with Gerry for his usual appointment on Monday. He hates when I inform the dr of any issues he is having. As we spoke about transfusions, I told the dr that Gerry's urine showed blood in it (orange spots on the porcelain). Gerry got VERY upset with me (even sat with that little boy angry pout). We got into a heated discussion, which upset me as I hate confrontation AND I knew he was wrong - the dr. needs to know all that is going on. The dr. was very supportive of me while being patient with Gerry. I also told the dr that Gerry's ankles have gotten swollen. When the dr checked he agreed and prescribed two diuretics. As Gerry's pissyness continued I walked out. He must have bitched to the nurse about me because she suggested that since he disagreed with me about the blood in his urine, he should just do a urine test. So, he did! I called several days later for the results and lo and behold, he did have a trace of blood in his urine. More important, tho... he had a urinary tract infection... and it was MRSA! Gerry had his blood transfusion (one unit) on Thursday and I had gotten the results as we arrived home, so we had to go into the dr's office a little later for a bloodtest to see if MRSA was in his bloodstream. In the meantime the nurse said she would call a prescription in to the pharmacy. We went to the dr's office about 4 PM and the nurse took his blood. As we left I called the pharmacy to see if the prescription was ready (as it was 2 hrs after the call went in). I was told that they were waiting for authorization from the insurance company, and the insurance company was waiting for a call from the dr telling them why Gerry needed this antibiotic. We turned around and went right back to the dr's office, which was now closed. Thank goodness they were still there and let me in. I explained what had happened and the nurse said 1. she had called in the prescription at 2 PM 2. she never did get a fax regarding authorization needed. I called the pharmacy and went through the whole thing with the pharmacist. He said he would send another fax to the doctor but that it would take several days for the insurance company to process the information and give authorization. I felt like Shirley McClaine in Terms of Endearment, fighting for my loved one's comfort. The pharmacist told me he could give me enough pills to get Gerry through the holiday weekend, until the insurance company gave authorization ,but that we would have to pay out of pocket with no reimbursement. "Sure," I said, knowing it was only 8 pills. The pharmacist told me it would cost $659!!! The price for the full prescription, 20 pills, is over $2200! CAN YOU BELIEVE IT? I hate to put a price on Gerry's health but REALLY!!! $659? I told the pharmacist that I would call him back. I went into the back to see the nurse, Joan. She was floored. She had also called the pharmacy and just then two identical faxes came in - regarding Gerry's prescription. Joan got right on the phone with the insurance company. The doctor then walked in (thank goodness he was still there) and waited to see the outcome. Then Gerry walked in (he had been in the car). As Joan finished with the insurance company, she looked shocked...the co-pay for the full prescription, after the insurance paid their part, was $1200! OUCH! Gerry and I looked at each other. Yes, it's for his health but it's a lot of money. Then the doctor, God bless him, said, "If you went to the ER and were admitted they would give you the antibiotic as part of your treatment. You will be seen by the infectious disease doctor." Gerry agreed and then mumbled that he was dreading sitting in the ER waiting room for a few hours. Again, doc to the rescue: he had Joan call the admitting office in the hospital - they were still there and did the admission over the phone - YEA! We went right over and Gerry was brought right up to his room. They did blood work, too, and he was seen by the infectious disease dr and Gerry's other oncologist (partner of the first one). The ID doctor told me that I didn't have to be tested for MRSA, even tho it's contagious. My immune system is good, I just need to use a separate toilet and do lots of hand washing. Gerry was in the hospital overnight, had the antibiotic by IV before he was discharged, and now gets the same as an outpatient in the ID doctor's office. He has the first one today. I am not sure how many days he has to go, probably for 10 - 14 days.

But that's not all: One of my best friends, Cheryl, just became a grandma again, to a beautiful baby girl - Payton Elaina. Sadly, 3 weeks before Payton was due they did an ultrasound and found that she had fluid and a blood clot in the left hemisphere of her brain. They delivered her early by C-section. Four hours after her birth she had a seizure. They took her to the neo-natal ICU of All Children's Hospital in Tampa. The doctor's put in a reservoir to hopefully drain the fluids. Please say a prayer for Payton and her family who is going through this with her.

But that's not all: On Friday I got word that Gerry's oldest brother Pat (77) was just diagnosed with advanced cancer in his stomach, liver and bladder. It's metastisized and it's not good. Out of 5 sibings, 4 had cancer. They lost their brother Donny, second oldest, a few years ago to liver cancer. The youngest, their sister Carol, had breast cancer. Gerry has end-stage melanoma and now Pat! My heart breaks for Eddie, the brother just above Gerry, who now has to live in fear that he might get cancer too, but worse than that, he will watch his two brothers die within a short space of time.