Dear Diary

No headaches but a little tired. It's the upper body sort of tired when you exercise more than usual. I am now awaiting stem cells via IV next Monday afternoon.

The construction noise wasn't too loud this morning. It is mostly traffic sounds. At its peak, the construction noise sounds like an angry Godzilla seeking its missing child. Godzilla came back Saturday afternoon and is now calling.

PT was very quiet today. Big Dr. Lee took advantage that most patients chose to pass on PT today (Saturday). Instead I only went for acupuncture.

I had an interesting encounter at OT Friday afternoon. I was wearing a T-shirt that had the Maxwell's Equations and the phrase "and there was light" on it. For the unfamiliar, Maxwell's Equations describe electricity and magnetism in four very concise but mathematically sophisticated equations.

[ I promptly forgot these equations after finishing the final exam for the classes! ]

Back to OT ... I was sitting across from an elderly gentleman in his 70's (?) receiving some treatment. He noticed the writing on my T-shirt and asked Lily, "Is your husband a mathematician? I used to be a chemistry professor and recognized many of the same symbols." It is odd how certain concepts transcend languages.

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Room with a View ... Addendum

After speaking with several other patients in the ward, we've discovered a couple of things about our room. It sits on the noisier side of the hospital nearer to the major street construction. It happens also to be a bit larger. Not only is there room for three beds (but assigned to one patient), but there are also drawers along the wall and separate closet space for each patient's belongings. In contrast, some rooms have accommodations for only two beds and may lack the drawers along the wall.



One other observation is that the toilet, shower and sink are not 100% wheelchair accessible. The shower is blocked by the toilet, which itself is close enough to the bathroom door to require leaving it open if you need to use a wheelchair to get in/out of the toilet. There are ample handrails along the bathroom perimeter. However, due to Kim Poor's experiences in Fall 2006, there is now rubber place matting in the shower area. Be forewarned, the matting is hard on the feet.

The sink area, located outside of the toilet, doesn't allow a wheel chair user to wheel up to the sink. One has to reach over the edge of the sink.

I know, picky, picky, picky!

So Far, So Good

The second lumbar puncture/stem cell is progressing; cross your fingers that it stays that way! At least from an unscientific perspective, my energy level seems a bit better. I was cautioned though not to overtire myself. Is this the stem cells at work? Or is it the very intense physical therapy? Hard to say.

One observation I made may help others avoid the headaches from the lumbar puncture. Of course this is purely anecdotal but you never know. When the hospital administers the lumbar puncture, you are instructed to lie flat on your back for six hours WITHOUT a pillow. Your spine (at least from the shoulders up) is straight.

During the evening when we had asked a nurse for guidance to empty my bladder (I was given a portable urinal for this purpose) she suggested that I could be flipped onto my side (with a pillow supporting my back) but that I should keep my head straight as before.

I took this to mean that it is important to keep the spine from the shoulders through the neck straight. Thus as a preventative measure, I went to bed flat on my back without a pillow. I still turned my head now and then as this doesn't seem to disturb the spine. Again thus far, no headaches.

One other item Lily had mentioned in the comments section of the previous post was that a red swelling has appeared mysteriously on my hand (where the IV was placed) after I emerged from stem cell injection yesterday. There is an update to this.

This photo was taken from Wednesday evening right after the stem cell injection. Since then, the swelling has gone down and the discoloration is less severe and now it is just discolored. There was never any pain or loss of function. The consensus by Doctors Yang (senior), Guo (Beike), Lee (PT) and Ye (OT) was that this was not associated with the stem cell procedures (my knuckle was not affected and it is in between the site of the discoloration and the IV entry point). Instead, the more likely culprit is that this was a delayed reaction to an acupuncture needle that was introduced to my hand just this week. More importantly, it'll probably go away on its own as it seems to be doing.

Pray for no complications with either the lumbar puncture or the hand discoloration. The next scheduled stem cell injection is via IV next Monday afternoon.

The naked man on the floor

The Stem Cell Ward is a busy place. Everyday there are patients leaving to return home and new patients coming in for the first or second time. It frequently resembles a bustling hotel.

My Aunt Lucy visited this morning. I was giving her a tour of the facilities and as we were walking by one of the rooms we heard a voice calling out rather urgently for someone to come in. Aunt Lucy, forever the good samaritan, suggested that we should investigate because she feared that the man behind the door has fallen down and was calling for help. As we gingerly opened the door, we spied a man, totally in the buff, sitting on the floor with his back towards us. After recovering from our shock, I remembered being told that this man was the bete noire of the ward. I quickly led Aunt Lucy out of the room and told her that he was not quite right in the head. Then I went to the office to alert the Beike staff. They apologized profusely and said that Mr. Au Naturel was having emotional problems and that he has had these problems even before his arrival at Nanshan. He was threatening the staff that he was not going to leave after completing his treatment. They were in the process of helping him move out of the ward and into a nearby apartment.

Aside from the price of the treatment, there are other intangible "costs" associated with coming to China. First of all, it is the cultural shock of being thrown into an environment where the climate, language, food and customs are totally jarring even to the most seasoned of travelers. I've been told many times by other patients that the Chinese food here is different from the Chinese food "back home" and that they found some of the local cuisine a bit too exotic for their tastes. In all honesty, Richard and I are doing well with ordering takeouts here, but this is because we grew up eating home cooked Chinese food.

Secondly, the length of the treatment (one month) is very wearing on both the patient and caregiver. I'm use to being able to go where I like and do what I please. Daily rituals like watering my orchids, putzing around the yard or walking to the mailbox to get the mail are gone. These things may seem mundane but they keep me grounded and provide me with a sense of order and regularity. Add to this the close quarters, jet lag, construction and traffic noise, humidity, and lack of proximity to friends and relatives and, after some time, we find ourselves thinking of home.

Lastly, it is inevitable that one suffers setbacks during the course of the treatment. For Richard, it was the initial headaches and the lack of visible improvement that were disappointing. While we understand that it is naive to expect instant results, it is human nature to hope for the best. Because some patients have other health problems that are either direct or indirect sequelae of their major affliction, e.g. poor circulation, high blood pressure, etc., they are more prone to experience unforeseen illnesses during their stay. Fevers are not uncommon. However, these are dealt with swiftly and efficiently by the medical staff. Still, it is miserable to be sick and away from home.

It is not my goal to discourage prospective patients from seeking help in China. I merely hope that by sharing our experience and observations, it would serve as caveat emptor. Know that this stem cell treatment is not for everyone. It takes commitment and a positive outlook to make it a success. Having said that, I must point out that I have met more than one patient who is returning for a second time because of the fantastic results. The folks here, both medical and administrative, have been more than kind in catering to all of our wants and needs. As for Richard and I, we are optimistic that this trip is going to be a fruitful one but still, we are counting the days until we go home.

Room with a View ...

I couldn't help but provide a little color in this post. Ernesto, you asked for them, here they are. This is the view from our window. One thing is that this is a growing urban area. Aside from the din of traffic and "horn rage" (as George Arruda called it), there is the incessant clanging of construction machinery. Expect to be awoken on most days by 7 am by these sounds. Oh well ...

One step forward, two steps back

Richard is still plagued by headaches. I guess we rejoiced too soon Friday night thinking that he has dodged the bullet. We've found that the headaches strike whenever he has to sit up for any extended amount of time and all he has to do is lie down to make the pain go away. Tylenol helps too. By experimenting, we've found that the same triggers for migraines also produce Richard's headaches. These are loud noises, bright light, abrupt lateral movement of the head and being in a stuffy room. When he gets horizontal in a cool, dark and quiet room, he recovers in a fairly short time.

The morning acupuncture session was uneventful. I told big Dr. Lee about Richard's headaches. He said that it is important that Richard not attempt to sit up too quickly which may make him dizzy and lead to dangerous falls. This advice was echoed by "young" Dr. Yang (as opposed to the "old" Dr. Yang who is the supervising doctor who saw Richard last Tuesday) earlier this morning. Dr. Yang explained that the pressure in the spinal fluid has been disturbed by the lumbar puncture and that in turn caused the headaches. He said that it was imperative that Richard get enough rest before the next lumbar punch.

The afternoon PT session went well but the OT session was interrupted when Richard became nauseous and sweaty and had to go back to our room. The doctor on call prescribed a painkiller while the nurse came to take Richard's temperature and BP which was slightly elevated. After resting in bed, his BP went back to normal and his nausea subsided. We're mindful of Kim Poor's advice to stay hydrated but drinking more water means Richard needs to make more trips to the bathroom which can become a problem at night when he's groggy with sleep. At home, he's spoiled because our ADA bathroom can accommodate a wheelchair without a problem. Over here he needs to park his wheelchair outside the bathroom and then lean his head against the wall (we call it the Yukiko maneuver --- thanks to our friend Yukiko who showed Richard how to do it) to steady himself to sit on the toilet.

It's now close to midnight and it has just stopped raining. The air is refreshingly cool and crisp. I left the window open and there's a nice breeze wafting in. Outside the hallway, it is still a little stuffy. I went to the common room a short while ago to fill my water bottle and was surprised to find quite a few people there. I spoke to Sue who is from England. She's waiting to call her two daughters on Skype. Because of the time difference, she has to stay up until this hour to be sure to catch them at home. I found myself missing family, friends and home late at night when all's quiet. I see that I'm not alone. Tomorrow, Richard plans on posting some photos that he has taken of Nanshan.

The American Patient

By posting in the late afternoon Shenzhen time, the datelines on our posts are finally in sync with the events of the day. Richard has decided to leave our Mac on California time so it is forever 15 hours behind Shenzhen.

It has been a difficult day for Richard. He looked pale when he got up this morning and started to sweat profusely. He was wearing a short sleeve t-shirt and light sweatpants. I had put the air-conditioner on overnight so the room was cool. He continued to sweat throughout breakfast while developing a runny nose at the same time. Then he got a bad headache and had to lie down. I gave him some Tylenol. His face had taken on a waxy sallow look and his skin felt clammy to the touch. I went to get the nurse. She verified that Richard did not have a temperature. She asked if Richard had stayed flat on his back for 6 hours after his injection on Friday and I told her that he did. We let him drift off to sleep and he slept for the next few hours and woke up for lunch at one o'clock.

He looked visibly better and had stopped sweating. His color had returned. His face was pinkish in color and the dark circles under his eyes were barely visible and his headache was almost all gone. After lunch, Richard decided to take a short walk around the floor. He has not used his walker since we got here. It took him quite some effort to ambulate the length of the hallway. I should mention that he had fallen in the shower the previous night and scraped his right knee on the hard rubber mat on the floor. He had slipped off the small round stool that he sat on in the shower. Because of the neuropathy in his hands and feet, it did not hurt him much but the knee was visibly bleeding.

I am speculating that because we had so many visitors yesterday, Richard did not have a sufficient amount of rest and this resulted in the set back today. I will make sure when he gets his next lumbar puncture on Wednesday that he gets enough rest the day after the procedure. Right now, he is in bed watching the movie, The English Patient. We get many Chinese channels (both Cantonese and Mandarin) on the TV in our room. There is even a Chinese MTV channel and a channel that's in English. We watched "The Closer" yesterday. So far, we've not seen any American programs that have been dubbed in Chinese. You haven't lived yet until you've seen Bugs Bunny dubbed in Italian as we had in Switzerland!