Alta Bates Nitty Gritty

Day +16 We often refer to John as "John it is always something Sanchez" while he is an inpatient because he often has nagging little things that happen to him. While he is an out patient this is not true. Last night John's blood pressure shot up, 145/104 sometimes a bit less, most of the time a bit higher. His heart rate has steadily stayed pretty high, ~ 100 beats a minute especially since the actual transplant. So Dr. Stein decided it was time to call in the big guns, the cardiologist. At this moment we were waiting for the results of John's Echocardiogram and EKG. In the meantime John is taking 3 cardiac medicines. The nurse has cut them in half and John is trying really hard to take them as requested. By tomorrow he should be able to eat better, take his oral medication and spit less (finally). I doubt we will have the results until Monday, but John's heart has taken a beating before and recovered so I am not too worried about the results of the test.

One of the patients on the unit passed away early this morning. Jim was in his early 60's and finally his liver gave out. I met his wife Carol at the Catholic services held on Sundays for the patients and family members. Jim was 8 weeks post transplant. When I saw Carol last night she let me know that Jim was failing and shutting down. Carol was very stoic and graceful in what has to be a terrible time in a loved ones life. She encouraged me that John should keep fighting, to remember he is young and those young organs recover better than us middle age folks. But what an awful feeling to walk down the hall to see the bio hazard team dressed in their suits cleaning the room. All I could feel was pain for Carol and her son, and sadness that Jim had to die here instead of at home. I know he was peaceful as he had slipped into a restful slumber over the last few days. So tonight I close hoping everyone who reads this will say a little prayer or what ever your belief system allows for Jim, that the next world he is in has no illness, just good.

Day +15 John is boring again! His total white cell have increased to a whopping 1.3 which means if he has the energy he can go outside the unit today. His nurse, however advised him to wait a day or two because of all the smoke from the fires. She feels even with a mask it may be to much of a chance with John's fragile new immune system. If anything with John's long illness we have learned to listen to the nurses, so he will walk the unit instead.

The other good news is John actually swallowed a couple times today! He is drinking small sips of mint tea, his morphine drip is turned way down and they stopped the steroid breathing treatments for the mouth and throat swelling. There is new skin growing in throat as he starts producing cells. They are taking him off of the antiviral, two of the antibiotics, and one of the antifungals. His kidneys have been showing signs of where and tear so they are cutting the cyclosporine (anti-rejection drug) in half to give them a break. His blood pressure is still up and so is the heart rate, but hopefully by tomorrow he will be able to take those medications and get that back to normal.

It began to sprinkle today. Good news for the firefighters trying to put out the fires down here. Watched 'Whale Rider' yesterday. A really sweet movie worth taking the time to watch.

Day +14 It has been two weeks since John's transplant and the cells continue to grow. He is now at .7 which means in a couple days if he feels like it he can leave the unit for a few minutes as long as he is wearing the heavy duty mask. I know these must be donor cells growing because the last few times John was treated with chemo it took weeks to have his cells return and that was with the help of Neupogen (a white cell stimulating drug). This time they are returning without the aid of any drugs and growing quickly. Dr. Stein said if all continues John can leave as an inpatient and begin the long process of finishing out the 100 post transplant days.

John this morning took a small sip of water. It hurt going down, but that is a beginning. Since then he has been dreaming quite vividly this morning. Even woke up long enough to give me a dirty look and said, "I bet you now your going to do yoga." Yoga of all things.

I had a slightly upsetting thing happen yesterday. One of the other patients is from northern California too. In fact when she is released she will be in the capable hands of Dr. Wolf. We were talking BMT talk, what her particulars of her disease, perfect match so and so forth. And just like a person who comes up to you when your 9 plus months pregnant and insists on telling their delivery horror story. She said everything was going great until about day +18, even talk about releasing her like John and then all hell broke loose. She began first with raging GVHD. Then her liver had problems. She was not able to breathe. She had a bout with pneumonia. She is now at day +71 and still an inpatient. Where I was confident yesterday that all was going great since last night I have be fretting that any minute now John could become terribly ill. This BMT experience happened to a person who had a perfect match. John had a mismatch and this makes me afraid that day +18 can bring even a worse experience for John.

I will have to keep being faithful John's story will be different. Two other patients I met have been discharged. They are a little older than John. One woman is the mother of two small children, the youngest not yet a year old. The young woman was diagnosed right after her baby was born. The other thing I keep holding on to is at least she (Day +71) is better. She may have been through an awful time, she is ready to leave. Lucky for her she will have Dr. Wolf's kind brilliance to go home to.

Day + 13 Today finds that John's new immune system continues to make white blood cells. His WBCs increased again a point to .4. The medical staff keeps promising John's health will turn around once the white cells return. In our experience we have found this to be true, but the waiting takes a long time.

Today's word seems to be fatigue. John took a spin around the BMT unit last night and barely made it around once. Believe me this unit isn't that big so John is very tired. By the time we reached his room he was shaking so bad I was afraid he wasn't going to make it. The fatigue may be the result of him needing red blood cells as they are more often giving him RBC transfusions. This morning he has mostly been asleep in between the interruptions for treatment and vital signs. His fatigue also may be resulting from him not sleeping most of the night. I have to admit I was a bit peeved at him last night keeping me awake with his constant spitting into a cup. It is worse than being home on the range with cowboys chewing tobacco. Spitting, however, is better than listening to him use this suction machine they set up to suck the secretions away (you don't want to know where, it is too gross). This sounds awful, much like an old man with coal miners disease and emphysema. If he isn't sucking or spitting then I am treated to the occasional sounds of him unconsiously swallowing, thus triggering his gag reflex and barfing. The world of leukemia...the fun never ends. Well it does it just seems like it takes forever.

Today in Durate it is cloudy. The fires are still raging, but I believe the fire fighters have gotten a handle on them. When I turn on the computer and go online to my Yahoo page it gives me Albany's temperature. I cannot believe it is still in the 80's. I am thinking they are measuring the temperature during 15 minutes when the fog finally rolls out of Solano Avenue only to return a few minutes later.

This afternoon should be low key. I walked to Blockbuster and rented The Hulk and Whale Rider. John has so many medicines to be given to him his nurse doesn't think he will have a minute to be unhooked from his IV to give him a shower.

Day +12 The news today is John is showing the beginning of production of white cells. This morning his white blood count went from .2 to .3 which means over the next few days he should be feeling better. Once his white cells return his immune system should help heal the mouth sores and start controlling the swelling he is experiencing. The mouth care specialist this morning added a steroid treatment to help decrease the swelling of John's face, inside cheeks and throat. This should quickly make him more comfortable. His potassium was low this morning which could be an indication that John needs to be able to get to the point of swallowing as he has gone several days without his heart medication. As long as the doctors are on top of it, it should be okay. Today along with his 4 anti-biotics, 2 anti-fungals, 1 antiviral, IV nutrition, lipids, MMF (anti-rejection drug), Cyclosporin (another anti-rejection drug), fluids they have added potassium. I know it is just a bit of over micro management since you and I probably often have low potassium. We just don't know it because we don't have our blood looked at each day.

The fire is still affecting many in this area. This morning John's primary doctor could not get back from the east coast because of the closure of the local airports. Laura, my sister was suppose to leave Burbank at 1:30 yesterday afternoon. At 3:00 she called me to say her plane had yet to arrive and they announced it would be at least another 3 hours before a possible departure. Luckily Scott and Bowman had not left to drive home so they picked Laura up at the airport and drove her home.

One of our friends, Cathy Mashey who is doing the Honolulu marathon for the Leukemia/Lymphoma Society to raise funds for leukemia research lives in Simi Valley which is in the middle of the fire storm. Please keep her in your prayers that her house is spared from this destruction. It is so maddening when one thinks these fires were set by someone for their own entertainment. The smoke is quite thick, I went for a walk this morning and had a fairly sizable headache when I returned. The nurses were pretty upset with me saying they do not want me to get sick, that they need me here for John. I will have to be a little more thoughtful before I take a walk. Really I should be happy for this event as the nurses are finally beginning to acknowledge to me how helpful I am to making their job easier and John's recovery faster.

Day +11 John seems to have turned a corner. He still isn't swallowing, but is finally sleeping soundly. Auntie Laura and Scott were visiting and they said he slept most of the day while Bowman and I went to the Getty yesterday. When they reported that I thought I would be in for another sleepless night, but John slept most of the night. The exception was when he got up to use the bathroom his IV some how sprang a leak which caused him to have a "back flow" problem. This is when instead of having the flow of the fluids going in, the flow was going out. It is hard to describe, but the end result is blood was flowing from John going back to the IV bags. Problem is the IV lines are not made to go both ways, so at the joints of the lines (try to picture this: John has two main lines sewn into him that up to 8 IV machines pump anywhere up to I think 10 medicines at one time, currently at this writing John has 8 bags flowing into him, so into these two lines there are several interconnecting pieces) the blood was flowing out of them. Blood was dripping everywhere. Luckily his nurse was just outside the door and clamped the line to stop the carnage. The nurses assistant next comes in a moon suit to clean up the "bio hazard". I just took the towel's and cleaned it up myself since John should never be a bio hazard for me. Beside this bit of excitement it was a pretty low key night where everyone had a good nights sleep.

The weekend doctor, Dr. Parker came by to see John this morning. I mentioned that I was envisioning John out of the unit and in the village by Nov 5 at day +21. I thought he would look at me like the rest and think "she's insane" but he said instead, "that is a real possibility." He is doing that well. Just have to get him back swallowing again. If John can tolerate all his pills he can leave the unit. So please keep that in mind as another new mantra...cure...no GVHD...swallow pills.

Speaking of bio hazards, one of John's anti rejection medicines is called "MMF". I really like that it comes in a bag with a large red sticker on it: BIOHAZARD. The staff cannot even throw it away in the regular garbage, it has to be thrown away in large red containers with the little automatic lids. I guess one can reason that since they are pumping this into John perhaps he has become a bio hazard. Just hard for me to believe that my sweet baldy would ever be harmful to another person.

I know some may be concerned about all the fires surrounding us. The smoke is making impossible to see the San Gabriel mountains, but both fires on either side are at least 50 miles away. Some of the staff are being evacuated from their homes. Everyone is managing well given the stress level this adds to an already stressful work environment.

Last note, for those a bit concerned (as I am) the last few days John has had much friendlier nurses which makes it much more bearable to be here.