Wow. It's been awhile since I did an update. Of course a lot of my time is consumed with being with John at the hospital, and I have not had time to do entries as much as I had wanted. Here is a synopsis of how things have been since John entered the hospital.
Friday - John was admitted to the hospital. He was started on chemo. Two different kinds. And some immunosuppressant drugs. If I understand correctly, these are to kill his diseased cells, so when the new stem cells are introduced (when he receives his transplant), eventually he will become disease free. Something like that.
Saturday - John felt sick today. Very nauseous. Headaches. But he was still a real trooper. He sat up in his chair all day, and he also went for walks up and down the unit hall when he was stronger in the morning. He insisted on wearing his jeans and shirt and stayed dressed instead of wearing a hospital gown or pjs. He continued his chemo today.
Sunday - John felt a lot better today. So much so that he helped the nurse decorate the unit for Valentine's Day, lol. She had him out of the room and up and decorating! He hung red hearts and other decorations all around! He was quite the creative one. He continued his chemo today.
Monday - John looked pretty weak, but his attitude continued to be great. He had chemo again. I hated to see him so weak.
Tuesday - John continued chemo today. He was also attached to a pole. He was hooked up from the pole to his chest. The pole has a line (tubing) that runs down it and goes into the chest port in his chest. He has about four bottles of liquids that are dripping into his chest. He has saline solution (or some kind of salt substance, lol) and he has immunosuppresant drugs running through the tubing into his chest port. On Tuesday they hooked him up to the pole 24 hours a day until he leaves the hospital.
John's hair is growing back at an extremely quick rate! We made a joke about how he could donate his hair to the Hair Club For Men!
John was 248 lbs. when he entered the hospital. On Tuesday he weighed 231. That is a loss of 17 lbs. if my math is correct. Sheesh. They told him eat like crazy for nourishment, or he will have to go without regular food, and get hooked up to a glucose IV. He was starting to have trouble eating a lot of food, because he says the food tastes yucky and sometimes bitter (this is a common side effect of chemo).
John got an ulcer on his tongue and a sore throat. Sores on your tongue and sore throats (and even sores in your throat) are common for high doses of chemotherapy. Hopefully it won't get worse.
The psychiatrist came and said John is doing great mentally. His attitude is so good. I am so proud of him.
Today they put up a chart on John's labs. It showed the labwork (blood counts) that they had drawn on him all week. One of the counts was his white blood count. I sat there shocked when I saw it. Normal white blood count is something like 4.8. His was 0.6. That is almost 0. They told him they wanted to get him down to 0.1 or 0 I think. That is why they are giving him the chemo and suppressing his bone marrow. It is killing his disease. I knew it was going to happen, but it is a shocker when you see it happen to your loved one. It will ultimately make himbetter, but they are making him SO weak.
On Tuesday night after visiting John at the hospital I went back to the Hope Lodge and cried. I feel like my body is breaking down some. My muscles hurt. It is so hard seeing him hooked up to that pole with the tubes going into his chest. And with all those bottles of fluid hanging down. I thought I was so strong, but I am not. Crying was all I could do.
Wednesday - Today John had general malaise. He was finally very weakened by the chemo. They did not make him have chemo today, and will not make him have it tomorrow (Thursday). They are giving him two days off of chemo before the transplant on Friday. Even though he was weak, he still showered, got dressed, sat up in his chair, watched TV, and chatted with me. I am proud of him! The doctor said he was still their star patient!
I wish I could say I was the star caregiver today, but I was not. I had to leave John early tonight, because I thought I was going to throw up. I felt so nauseated while visiting him. I also started to get a little down. I was there in the hospital room, looking at him hooked up to the pole (and ill), and waves of nausea overcame me. And waves of sadness. I know this is the thing that will save his life, but it became too much for me to handle right then. I asked him if he minded I go. He said go ahead. I feel extreme guilt about it but there is nothing else I could do. I needed a change of scenery, and I couldn't get sick on their floor. Yes, it was that bad. Now, I must get a grip on myself, and fast. Afterall, I need to be there for him for the next several months. Am I normal, or am I insane?
Bye, and sorry this was so long, all my love,