April 12, Saturday

Johnny and I spent the beginning of each day in our AZ room, (screened in patio)
drinking coffee and talking, and since we were early risers we always watched the sun come up.

On this morning Johnny said to me, "I didn’t sleep much last night, I have a sore toe and it kept me awake." I asked why his toe was sore and he said it was an ingrown toenail. I thought no more about it other than to tell him I had some medicine that would take the soreness away and got it out for him to use.

April 13, Sunday

Again we sat drinking coffee in the AZ room and Johnny said he toe had kept him up again the night before. I said, "Johnny, take off your shoe and let me see that toe."

His whole big toe was dark purple and I was so shocked at the sight of it I said, "That’s not an ingrown toenail! You need to see the doctor!" I had no idea what it was but it sure looked ugly.

April 14, Monday

We went to Johnny’s doctor who said it looked like a vascular problem and made an appointment for the next morning for Johnny to see a vascular surgeon.

April 15,

Johnny saw the vascular surgeon and was admitted to the hospital that day. After numerous tests they discovered a huge blockage just above his groin area. He was scheduled for surgery the next morning.

April 16,

They took Johnny to surgery but were unable to open the blockage for some reason and scheduled him again for the next day. They told me if they were unable to open it this time they would have to do a bypass in his groin. By this time the discoloration of his toe had begun to spread up his foot.

April 17

Again Johnny was taken to surgery and this time they were able to put a stint in to open the block in his artery. We were so happy! The pain in his foot had become so excruciating that he was on some really heavy pain medication.

April 18

Johnny develops pneumonia and is intensive care. To make matters worse because of the surgery two days in a row, the iodine contrast dye they use has damaged his kidneys and they are telling us that he may have to undergo dialysis just to get them started again.

Eventually after a few days his kidney function improves without dialysis and his pneumonia seems to be gone. After 8 days in the hospital he is able to come home.

We are so happy to be home at last and to have this crisis behind us!

After a few days Johnny complains about pain in both feet, and indeed the discoloration
is there again, and this time both feet are affected. I immediately call the doctor and
he thinks it is just tiny pieces of emboli that have broken loose during the surgery and that they may take up to a month for the body to absorb. He sends out pain medication.

After one week at home Johnny gets up in the morning and I notice he is pale and he says he isn’t feeling well. He has a temperature so I take him back to the hospital.

More tests….. they discover the stint they put into his artery has collapsed and he has the pneumonia back. If that isn’t enough on the second day they tell us that only one kidney is working and the other has shrank to half its size because of a blockage there. The kidney that is working is only working at a small percent because of the damage from the dye. At this point Johnny doesn’t care about the kidneys or the pneumonia, he is consumed by the incredible pain in his feet and legs.

Because the pneumonia came back so quickly the pulmonary specialist decided to do a lung biopsy and other tests. Finally the bad news…. Johnny has lung cancer, it has spread already to his esophagus, bronchi, and lymph nodes.

Johnny is unconcerned with the cancer and is only worried about the pain in his feet and legs, he can think of nothing else. They give him some powerful pain medication and it causes him to have hallucinations and to be a bit confused at times but it is better than the suffering he was going through.

They give us this prognosis: With radiation, (he cannot have chemo because of his kidneys, etc.) he may live as long as a year. Without it 3 to 6 months. I am shattered by this news and not sure at all if Johnny understands.

The doctors ease back on the pain medication in order for Johnny to be lucid enough he can understand what is happening to him and to make his decision. At first Johnny opts for the radiation. But then he questions the quality of what his life would be and inquires whether or not they can do surgery for the blockages that is now in both legs.

When he is told he cannot have surgery because of his lungs and kidneys, and that he may possibly in the near future lose both feet and possibly his legs, he makes his decision.

No radiation or treatment. He wants only to have enough pain medication to be comfortable and he places his future in God’s hands. At first I beg him to at least try the radiation because I am selfish and can’t bear the thought of losing him. He asks me to call each of his four sisters and ask them their opinion. He asks that I also ask my family their opinions. They all support his decision and finally, although my heart was breaking I have to do the same. I am devastated and cannot believe what has happened to us in such a few short weeks.

Finally Johnny is released to what was supposed to be a rehab center, where he was to stay for a few days to make the transition to home easier. (I never did quite understand this) The rehab center turned out to be nothing but a nursing home and one of the worst I have ever seen. I will skip the horrors of this place except to say that on his fourth day there his agony was so intense I had them call an ambulance and I had him taken back to the hospital.

Through blood work and tests we learn that the cancer is spreading faster than they had thought it would and I am advised by the doctors to seek help through Hospice.

The Hospice lady comes in and tells me that they will have Johnny taken that afternoon to their Hospice center. He will stay for 48 hours so that they can access his pain level and give him the right dosage of pain medication and then I can take him home and care for him. This is what Johnny and I both want, he wants to come home so badly and I want him where I can take care of him and be with him every minute of the time we have left together.

As soon as he arrives at the Hospice center, which is a beautiful and caring place, they begin immediately to give him pain medication. After an hour his pain returns and he thrashes from side to side in his bed and they increase the dosage. Before the day is finished they have increased the dosage 4 times. He is basically comatose from the morphine and can no longer communicate with us. His sister Liz is there with me and we lean heavily on each other for comfort and support.

She is the strong one and and I would have been lost without her.

His other 3 sisters live in different states but through emails, and phone calls they help us as much as they can. His sister, RoseMarie sends me bible passages to read to him and I do this quietly and just hope he hears. Liz whispers in his ear and asks him, "Johnny, do you know Jesus loves you?" To her surprise he nods his head yes.

From that we know that at least sometimes he can hear us talking to him and this brings us great joy.

On his second day and what was supposed to be his last day in the hospice center I wrap my arms around him and kiss his face. I tell him, "Johnny, Johnny, I love you so much!"

He answers me with what is to be the last words he ever speaks, "I love you too."

I tell him thank you for the many wonderful and happy years we spent together and I tell him, "Hang on honey, you are coming home tomorrow!"

Late in the day I have to go home for the hospice people are to bring a hospital bed and other equipment I will need to care for him. They are supposed to be there at 7 p.m.

but they don’t arrive until 10:30. I call them several times because I am frantic to get back to Johnny. Finally I return to his side at 11:15 p.m. I talk to him and tell him how I love him. I kneel beside his bed and pray that God will watch over him.

At one a.m. the nurse suggests I go home and try to sleep a little because with Johnny coming home in a few hours I will be busy and need to be rested. So I go home and shower and lay down. A little after 3 a.m. the nurse calls to tell me Johnny has passed away. I am heartsick and I call Liz and we both race out there. He is gone. My love, my Johnny, gone. And the worst part is my own thoughts, he died alone. I am so upset about this that I am just beside myself with guilt. But then someone and I cannot remember who said to me, "Maybe that’s the way he wanted it. Maybe he wanted to spare you from hearing the last breath he took." I am comforted by that because that sounds so much like him to want to spare me any pain.

It seems like everything happened so quickly! It seems like it was just yesterday that we sat together in the AZ room on our glider sipping coffee, talking, laughing, and sometimes holding hands. We had a wonderful life together and I am thankful for all the wonderful memories I have but it doesn’t help the pain of losing him. I ask myself, "How can I go on without him?" But of course I must and I will. I will weep for him and long for him for a long long time I am sure. I have blessed with so many people that care about me and are doing their best to help me through this most difficult time in my life and for them I am so grateful.

And to my Johnny….

I love you…. And I always will, forever and ever.

XO Charlotte

"mama"