Alta Bates Nitty Gritty

Day + 10 Before I tell you the details of John's long days and nights I have to mention that the four little squirrels have told their friends about the sucker in room 712 because they are currently eating me out of house and home. This morning one was hanging on the bottom of the bird feeder doing one arm pull ups grabbing peanuts and another was on top hoping to snag a few seeds, this in turn was making the birdfeeder swing dropping seed to the friends below. One of the nurses said that once one of the squirrels came up and knocked on the window when there were no peanuts to be found by the last inhabitant of John's room. One of my missions today is to make sure I stop by a non-striking store and buy more peanuts so I don't bring panic to the squirrels today. It also won't make John feel any better combined with all the other noise on the unit if there is persistent knocking at the window.

Yesterday another colleague of Dr. Stein, Dr. Nada (by the way she was great, had a bedside manner much like Dr. Wolf, treated me like I might understand) said John should start really feeling better by day + 12. That is only two days from now. Currently the days seem really long, but that is only 48 hours which I know he can get through. This morning the nurse gave me copies of his labs from the last few days and aside from the expected low platelet and hemoglobin (today red blood cell transfusion) his blood looks great. No indication of kidney failure, heart or liver problems. I am so relieved to know John is holding tough as seeing him lie in his bed in pain is difficult.

Last night just as he was finally in a deep sleep the professional mouth person came by to give him a treatment. The dilemma is do you let John sleep and hope he stays asleep or wake him because you know he will be up in 30 minutes needing the treatment. The decision was to wake him up. Then not even a half hour later for some reason he boots, and the acid washes all the numby medicine from throat. From 4:30 on John was pretty miserable. This morning his dreams are more vivid, from the extra pushes of morphine. I was standing near him and he had his hands in the air in a defensive pose. I put his hands down and asked who was there, his reply: Another football player. I guess he was dreaming he was playing football, I was just relieved it wasn't another monster. So this morning I sit here quiet before Laura, Scott and Bowman arrive from breakfast listening to John's dreams, him asking for the helper monkey to get him things, making sure there is no conversation that indicates someone trying to talk him into coming with them.

Day + 9. Not much new to report about John. He still cannot swallow anything, so taking tylenol for his fever is impossible, and he cannot take the heart medicine so his resting heart rate is around 115. I guess we don't have to worry about his jogging to get his heart in shape he just has to lie around to get his aerobic exercise.

I guess the part of today that makes me want to cry if John's hair is falling out. I kept thinking maybe this time it would be different. No, it is coming out in patches and before his shower at 2:00 I will face the music and shave his head. I know this is such a small thing to be upset about, but it feels like such a defeat when John loses his hair. It makes me face the fact that he has cancer. He had such thick and wonderful hair. Only a hair dresser can appreciate what great hair John used to have. This time it took almost a year to grow back, it had a little bit of grey in it and it was a bit wavy this time. I can only hope his eyelashes and eyebrows are stubborn this time and stay in. I know, I know to bitch about this seems so unreasonable since the drug that is causing him to lose his hair is the same drug that is saving his life. It just hurts for some reason.

The last couple days we have had a really pleasant nurse, Pam. She is a breath of fresh air, but it will probably be the last time we see her since it seems to be the policy to not let the patient have the same nurses. I suppose it is to keep the nurses from getting too attached, which we know is always a problem with John. I have always known how attached the nurses have been to John. It has been one of many reasons John has done so well with this illness. He does feel treasured, therefore he will continue to fight to stay on this earth. It does a Mom's heart good to know how loved her son is by other people, almost like by loving John and Scott they also love me.

There are fires in the area, it is a about 20 degrees cooler as the sun is blocked by the all the smoke. The sun this morning was a bright pink. Of course the gardeners were out in full force adding to the heavy air with their leaf blowers. Not only does this make tremendous amounts of noise, but they blow all the dust into the air. I have a stock tip for everyone reading this: buy Sudifed Non Drying Sinus medicine stock. I have to take it everyday to breathe. I am sure once John is out of the protective air of the hospital he will be on it daily too!

This evening will be the beginning to a great weekend. Scott is driving down with Bowman (Happy Birthday Honey) today bringing my coffee maker with Peets coffee, and Laura is flying in tonight. I am hoping to go to the Getty tomorrow, they have Michelangelo exhibit.

Well first for the bad news. No not John...I didn't when the lottery last night. I was sure by buying my ticket in Azuza at a hole in the wall liquor store I was a shoe in to win.

John is still suffering through the mouth sores, swollen throat, chapped lips and fever. It is continuing to spike up to around 102, but all the blood cultures are coming back negative which most likely means the fever is from not having white cells and his body fighting the pain. The nurses come it and ask him each time if they should turn up the morphine drip, but John doesn't like the long term effect of the drug. After a while he begins to hallucinate that other people are in the room and the withdrawal is pretty miserable. It really makes it clear that John will never become a drug addict in the future. Hopefully we have seen the worse of it and he will begin to get better. This morning even with his very swollen face he still looks like a sweetie wrapped in his red velvet blanket and 3 red pillows. I would take a picture except John would really not like anyone to see him like this.

I finally came to the realization why southern Californians are different than Northern Californians: They drink their coffee out of Styrofoam cups! I was getting my daily cup of java after being here for two weeks and I realized the cup did not have one of those don't burn your hand sleeves. Then I realized the cup was not made out of recycled paper. Maybe drinking coffee out of a styrofoam cup is the reason I have started to think that Arnold might just be what all of California needs (just kidding for those who are afraid my slightly to the left political views might be swayed while we are down here, even though we did get to watch a nifty car chase brought live to us on the afternoon news).

I thought those reading this might be intererested instead of me moaning about how I miss the Alta Bates doctors and nurses that I would let you know what Durate is like. Right now all of So Cal is going through an extremely hot heat wave, over 100 yesterday, but I decided to walk to Blockbuster any way. I noticed in the lovely town of Durate, everyone has green neatly trimmed lawns. One house had several bushes that they are currently trying to shape into little sitting elephants (not Gnish). It is charming since Duarte grew I am sure from the hospital being here. Mostly it is a nice working class Mexican neighborhood, where I believe most of the homes are owned instead of rented, so the houses are well kept, the decorations on the porches remind me of Mexico. The rest of Durate is one strip mall after the other, fast food on the old Route 66 and car dealers. Duarte probably has more car dealers per square foot than Colma has graveyards.

Now down to the nitty gritty at COH. John is still in pain. The morphine drip is helping with the mouth pain and the fever is in control or at least not going up. It has settled at about 101.5. Dr. Stein believes this should the end to the worse days from the chemo effect, we just have to wait for the stem cells to grow. John did give Dr. Stein the pleasure of barfing in his presence today instead of just me. The doctor did ask for mouth specialist to come 4 times a day to professionally rinse John's mouth and spray a special steroid to help reduce the swelling. The nurses for some reason are reluctant to giving me the details of his blood test and today I didn't have the energy to go through why I wanted to know the information. In fact, at the nurses request Dr. Stein had to "write an order" to give me permission not to wear a mask in John's room. He reasoned since I am in here so many hours a day that eventually John and I will share the same air masked or not. The ironic thing is the staff leaves his door open when they come in the room letting all the hospital air in AND they use the same blood pressure cuff and thermometer on all the patients. To me that is a much bigger conduit to germs than me sitting here, healthy, breathing the same air as John. So today I would like to report John is boring again.

Well, back to watching Adam's Family Values. If you haven't seen it is worth a rent.

Day +6 and John isn't boring anymore. Last night he went from a low grade fever to an official fever of 101.8. The protocol here at City of Hope is to wait to give tylenol until they are burning up with fever. I am not sure why, but he wasn't given tylenol until his fever was over 101.5, I am thinking they want the natural action of the fever to burn up the bug, or if they want it to grow enough to culture it and figure out what it is. The point here is they never really explain the reason it is just "the way they do it here". All I know is John had to wait a couple extra hours, uncomfortable until his fever got high enough to treat. This morning it is still high.

John's mouth sores are still pretty bad, but yesterday his throat became the problem. At least it took his attention from the leg cramps so only one terrible thing at a time. His throat is very raw. They are going to start him on a morphine drip this morning. I wonder if it is so raw from all the vomiting in combination with the chemo he has had. Dr. Stein says because they are still giving him methotrexate (not spelled correctly) a low dose chemo that will help fight the graft vs host disease (GVHD). The sores may last until he begins making white cells which will be at least a week. No one seems surprised by the severity of it, but I asked about prevention last week because John had terrible mouth sores last transplant and they said they were giving him IV drugs to help prevent it, I can only imagine how bad it would of been if that didn't happen.

I have to follow the nurses and doctors lead and try not to be too concerned. They feel this is well within reason for a person who has just had a transplant. I know the reader of this journal will probably tire with my comparisons between City of Hope and Alta Bates, but they are so much more secretive here. I feel like I have to ask about everything instead of being told what the program is. I think that I have a much broader imagination and it is better to know what to expect than be surprised by it. As I said I will have to follow their lead and if they are not terribly upset then I shouldn't be either. One last thing (well at least today) a lot of the employees where perfume. I smell it all the time (thankfully not the nurses). Not that in Berkeley that doesn't happen, but Aud and I were running the parking lots yesterday and a woman drove by with her window down and it permeated perfume. I can not imagine working next to someone who has perfume on so strong that one can smell it driving by.

John was given platelets and the way it looks he should begin receiving Red Blood tomorrow or Thursday. I am planning to walk to the video store and rent a few DVD's for John. We have already gone through the 50 or so DVD's we brought. I would run, but if I don't go before 8:00 it is too hot and smoggy and this morning John needed me around. Pop is here, but it turns out he has to work the day shift for a while. This means the plan of him giving me some afternoon relief is pretty well shot. I don't really mind, I get out enough, I am reading, not learning Spanish as I promised myself. I feel more comfortable being around John and knowing he feels better when I am here with him. I have to admit, not working while John is an inpatient is so much easier. Once he is out of the hospital and living in the village I will try to find a little work. I have been looking on the website and I think I will qualify for a temporary job working in the lab or doing registration type work. Until tomorrow...

Well the dreaded mouth sores have arrived. John even if he wanted to eat won't because of the mouth sores. This is a common complication of chemo and John has had them worse, since he has been diligent with his mouth care routine they are not as bad as they can be. Imagine when you have one little mouth sore how much it hurts. Well John has about 25 of them where some even interconnect with another on the inside of his cheeks, under his tongue and the back of his throat. He is trying to avoid still the morphine, but he may give into it today. He just hates the "spider webs" he sees when he is on the drug.

Last night he had a really good nurse, I think some the IV pump problem may of been the nurse John had for three nights before. He was up a bunch, but at least the IV machine wasn't the problem. I guess there will be other complaints and comparisons with his care here and Alta Bates, but there can be 4 other nurses standing around and if John's nurse is busy, it is oh well, no one helps with another's patient. Sometimes it can be 20 minutes before the nurse who is assigned comes by to help or give medicine or turn off the stupid IV alarm!

He is beginning to run a low grade fever which is common with being neutropenic (no white cells). Still getting platelets every day and his RBC count is still steady. John did go around the ward two times yesterday and considering how crummy he feels that is pretty good.

Audrey left this morning (pout), but Pop arrived safe and sound. He will begin working tonight. He transferred his employment for 3 months to be closer to John. I am looking forward to having so sort of routine where I can get a little breather from the room, and not feel bad when I leave John alone.

Our mantra right now with each expected complication is: This is the last time you have to go through chemo.

I don't think there is anything else to report, pretty much John is still boring medically speaking (Thank God).

Things are still progressing well with John. He is beginning to swell as the anti-rejection drugs do the their job. His tongue is especially swollen, and he still is not eating. Dr. Stein said for him not to bother trying because it will just prolong the throwing up. I know even when he isn't eating he still boots now and again. The hiccups are what are driving him crazy at the moment. He gets them off and on all day long, 24 hours a day.

A typical night with John is sleeping in between the IV machine beeping up to 20 times a night, his hiccup sessions, and dry heaves. To say the least I go to sleep around 9 p.m. and get up for a run around 7 a.m., but only get about 3 hours of sleep a night. I realize this is only going to be for a short time in the grand spectrum of things. When he is an out patient it will be much like being at home, going to the clinic several times a week, but no interruptions from nurses a night. I suddenly realized, however, that we are one day short of being here two weeks. Yesterday I nearly cried, I was sure I'd been here longer and was closer to going home, but no, less than two weeks. Do you think it is the smoggy air that creates that illusion? I did count exactly what day it is to 100 days post transplant and much to my disappointment it is not leaving here Christmas day, but January 24th!! I am sure John will be discharged earlier. He is tough.

So far on the medical front he is still doing well. Retaining water, so they give him a medicine called lasik which makes for several trips to the bathroom. His WBC is gone and he is beginning to receive platelets on a regular basis. I figure next Sunday he should be grafting the news cells, and I hope then he will be released from the hospital to the village, where John can begin to cook again. Cooking always makes him heal faster.

Audrey, my sister is visiting this weekend, and next weekend Laura, Scott and Bowman will be here for a few days. Pop was suppose to arrive yesterday. Perhaps he will arrive Monday. Always a mystery what time clock Jim is going by when "I will be here Saturday" ends up being right before he reports to work on Monday.