Day 15 – Working Harder

This is the last week. I must work harder because the results does not meet my expectations. I have had this stupid headache which (it’s my opinion) induced weakness Thursday and Friday. Those are many precious PT hours where I could have done much better.

Awaking was a bit hard; fatigue I think after fresh air, sun and travel by van/bus. The rash that started yesterday is getting really itchy! I don’t know what started it but MAN! I’d love to have 10 arms and hands to scratch myself…

My IVs fix dealers are here earlier this morning. No wonder; Doctor have to pass by. Actually DoctorS… Three of them; Doctor He and Dr Doctor and her collegue. I will try to get them in pictures and identify them. I have always been bad with names and faces; then they hit me with Chinese; hopeless…

Previous days have been discussed and I made them aware of my feelings. They do not seem to think the same way. They probably want to sell me few more weeks but this is not in my short to middle – term plans.

My plan is drawn since day 1. My last week backup plan is to double the efforts at physical exercise; get botox injected in the ligaments to soften them; Pain killers to let them force on the knees and other ‘jammed’ joints and 200mg of testosterone (20mg Heroine would certainly do too but I doubt they deal it openly, I am not rich enough). Hormones will give me the extra energy I feel I miss during exercising.

They ~really~ don’t seem to like it…It is a bit invasive; it might be painful; it is not in any protocol; we never did that, etc I think I heard that bell’s tone somewhere before… I am at a loss when I see hesitation. I must be at a such desperate level or somehow out of my mind. For my side of the story; I would say I am the free guinea pig (We even pay for it) and it makes sense when you waste most time trying to educate yourself throughout all available means. They probably are scared to slip out of their guidelines; afraid that would somehow influence the flow which they know best… I have no idea and answers to the questions like  “Why wouldn’t you do it?” remain evasive at best; ignored mostly. “We cannot make a blood draw right now because we do not know if the Stem Cells IV are modifying any of the basic values; as we did not panel the needed analyses when you arrive. (sic)”. It really looks like they try to drown the fish, for me, but again; who am I to contradict that. It just seems odd to me that they would not know if their proceeding does influence ‘any’ particle of my body but hey! “Everyone’s different” Hahahaha sure; can’t argue on that.

A dermatologist followed shortly seeing my rashe and decreeting it was the hot day and sweat allergy, nothing serious and gave me cream. At least it itches less, let’s see how it evolves…

I really gave my whole in the PT sessions and even acupuncture was restful this time. The William Tell of Chinese Medecine even introduced few points to me; along with needles-proof.  Four needles in the frontal bone of the skull, more painful this time. Don’t laugh; true: when I bite it feel pain in the middle of the head with those needles, and if I swallow. But well; even getting better ooks like crossing the path of pain.

Nothing compared to my knees anyway. Second session of PT was also intense and I swatted profusely; I was still breathless when back in the room.

I had a good and “oh wow” refreshing shower. Since I cant help much myself in the shower; the caregiver does assist and I was clean head to toes… Felt good.
AND hungry! Damn! I need to eat… Good disease, use to say my Mother when I was a kid. We had ‘doggy bags’ from Sunday and I ate all that was left as beef, beans with chili, spinaches and garlic along with a kind of steam thin pancake you get almost anywhere in Asia.  Thanks Heavens and all the other good beings of this universe, I’ll die with a full belly 😛

Early to bed; but strangely difficult to fall asleep despite the Stilnox sleeping pill… I browsed FB and internet until… Rrrr zzzzz….

Day 13 – Temple of Heaven Re-Visited

Note: I posted earlier with a mistaken name of Summer Palace. My apologies….

Saturday morning; 6:30. I try to raise my head and it feels ok; I dont know for how long tho. Mikalina woke up; Mr.Yang arrived; cleaning Lady passed by and my favorite IVs freaks pointed their noses early: we mentioned everybody that we will re-visit the Temple of Heaven – hopefully – deeper today.

As PT rooms are close; I had the Super G-suite which massage feet and legs for an hour until 11:00. Then our Needle Geek (acupuncture Doctor) came too; seemingly happy to pierce here and there and even in the plain top of my head “for the headaches” as he said… All went just Ok; I felt something was wrong…

We ate, I tried to start sorting some pictures; as we were waiting 3:00PM to leave; a bit after the sun peaks in the sky. And … Boom! Headache… I had to ask to be put to rest an hour in my bed; took a pain killer and fell asleep almost right away…

At 3:10 I had an emergency; emptied the full length of my intestines and right away felt ways better. The headache was still there but I decided it will not bare us from seeing the Temple of Heaven which is now hanging like a challenge.

Mr.Yang pushed me all the way. He has been on that day a real charm, very willing to show me every corner, even considering carrying me up the stairs of the temple.

Kathy (the coordinator) also planned to meet us and we went four of us around this beautiful place; amazement from amazement in architecture, gardens, a pine trees liitle forest, a hallway in white marble.. But I’ll make a post separated when I have time.

It was about time we came back; around 6:30PM; my head started again to be pretty painful and again I was desperate to be be in good shape for the Sunday trip at the Great Wall.

To be sure to be in shape I went directly to bed; swallowed pain killers and lots of water and put my head to rest.

Fresh air and the sun put me into Morpheus Kingdom faster than I thought it would.

Day 12 – Second Friday

The 14th of July: “Allons Enfants  de la Patrie!” – French National Day. As a native French speaker and being born 1 hour from the French border; those are dates I can’t miss.

Another reason I won’t forget for a while is the persistence of the headache that already occupied all my attention yesterday Thursday. I woke up ok; but a bit battled by yesterday evening.

Nevertheless; because I was awake and wanted to have my day as well as I could; I used the darn same protocol and decided that I’ll sit in the wheelchair instead of staying in the bed not really knowing if the headache will restart; since it is triggered by me raising my head.

Breakfast, IVs were ok, but not brilliants. First PT session was hard; painful and I don’t know if it is related and apparently no one know for sure. I went back to bed because I really wanted to get over that headache as we wanted to go to visit more thoroughly the Summer Palace tomorrow Saturday. It still close to here and this time we persuaded the caregiver to come and help.

Acupuncture, and afternoon session of PT; again harder, I am a bit pissed since I follow all predicaments of the Doctors and Nurses and it does not really pay. We met a Russian Gentleman who came also to be Stemcelled’ but my Russian being as poor as his English; we made acquaintance via an Armenian in Chinese hahahaha – Don’t try to follow; I’m lost myself…

So in bed early, lots of water, pain killers, sleep early. I must be OK for the week-end! We want to see the Great Wall too; it is very close (75Kms) and the van/bus is really a delight, cumfort and price and facility.

Day 11 – The Bad Day

I suppose every journey has its bad moment. My bad day was Today (I hope there wont be any other similar or even worse) so get through it.

I woke up normally; nothing abnormal nor any complain I could make. I had the usual; coffee, IVs Cocktails.
The first bad news arrived: PT Doctors have talked to Osteopath Doctor and Neurologists and arrived to the conclusion at mid-term that there is very little chance they can re-align my knees; legs and feet within the allocated 3 weeks; it would need much more time and efforts; unless a miracle. The other option is surgery on both knees to reduce the encumbering growth of cartilage and possibly bones. It is difficult to judge without an XRay but we cant do that as there is a risk the rays might kill the stem cells freshly injected.

Furthermore; surgery would certainly cost quite an amount of money that I suppose would far out-weight my allocation. Thus; head to the PT and pray…

…and we went to the Morning Physical Therapy session.

It is after that session that I got a beginning of headache. Not too strong yet; but persistent in plain middle of the head. I suspected the day before lumbar puncture but needed more time to assert that.

The TCM Acupuncture session went through and it was still acceptable. I was about to call the nurses but finally decided not to and went to take some fresh air instead before going to the afternoon PT session.

I went to the PT session and there it hit like a truck… I finished with a massive headache and the first thing I did when it finishes was to ask to be put in bed; call the nurses and the Doctor.

Doctor He confirmed that the PTs sessions must be at the origins; too hard too soon after the lumbar injection.

Result was one more huge IV with Sodium Chloride Glucose and a dose of pain killers. And I had to stay in bed the remaining of the day…

Not much fun but I had a great dinner made by Mikalina; my Angel… and went to bed early

Day 10 – 2nd Lumbar MSCT Transplant

Lumbar MSCT

I am not sure it is on purpose that I get this after the MSCT by IV of yesterday but I prefer to think they must have a reason. My question was left without answer but I am not sure they understood or wonder why the heck it would be of interest to me…

Fact is: this time I negotiated a late injection in order to be able to have my PT of 11:00 in the morning. They moan a bit (for their lunch time I guess) but I really am desperate to regain strength and my best hope is that morning session with the tormentor of the morning PT’s session.

Since they already flex my way I kept the advantage and pushed to have  pictures of the procedure but they back off and only allow 1 taken by themselves and handed to me… Well; I will push again at the first opportunity.

This time was a bit more felt (not really pain) than the first one. The procedure lasted roughly the same amount of time – plus the picture taking – and was headed back to the room… Lay down for 6 hours and watch the ceiling while nurses come regularly to take records to populate their data charts.

It lasted until 19:00 and since our caregiver have to leave before 20:00 I stayed in bed; had dinner in bed.

Mikalina prepared a bolognese sauce that we ate with butterfly noodles. I could set the table to type few lines before bed but my knees are very painful in that position…

Day 9 – MSCT through IV

The Morning schedule has been chopped at the break part…

10:30 I was shown the tube with Stem Cells; I was given an introductory perfusion of saline water followed by the mentioned MSC. 3 minutes later a following and tube cleaning of saline water was fed.

I was then temperature/blood pressure/heart beat taken and allowed to attend my PT session under the condition that I will alert immediately the nurses if I feel any uncomfortable or else.

It all went smoothe and even I dare to only have water ’til the dinner I am pretty sure I could have eaten something.

Doctor He (one of the neurologist explained to me the different types and cultures of stem cells and their role by migrating in place of action but you will forgive me if I can not really recall all that; and also dont want to give false information.

As it is Tuesday, Mikalina was able to go to the supermarket and bought us food for the week; as well as few more needed accessories.

She made us a steak pepper garlic. Succulent – and I gulped a full cup of white grape, much better than what I use in Taipei. The food is incredibly cheap if you can stay out of hi-quoted restaurants or delicatessen shops. I will try to make a post of the living cost here.

Tomorrow; second MSCT via Lumbar Puncture; I feel lucky that I do have side effects until now…

Day 8 – Back to Earth

Monday. For the morning schedule; if you are not following it is exactly the same since day 2.

  1. 6:30 Wake up
  2. 7:15 Cleaning Lady pass
  3. 7:20 Mikalina wakes up
  4. 7:40~7:55 Mr Yang (caregiver) arrive
  5. 8:00 Coffee and Breakfast
  6. 8:30 1st part of IV (with 60mg Gangliosides)
  7. 9:30 2nd part of IV (with 10ml Dang Shen Chuan Xiong – for whatever it is)
  8. 10:30 Break and a snack (sniker, chocolate bar, doritos, ham salami…)
  9. 11:30 – 13:00 Physical therapy

The caregiver come back after his lunch at ~14:15.
Afternoon schedule is a bit laxer as to know:

  1. 14:30~15:30 Acupuncture & Chinese Medicine
  2. 16:00~17:00 Physical therapy
  3. 17:00 meeying with Doctor(s)
  4. 17:30 meeting with Nurses at their Shift changing

It may vary a bit but ‘normal day (as Today) are like that.

I also received the dates of the next 4 Stem Cells shots: 11th (Intravenous), 12th (Lumbar Puncture), 18th (Intravenous), 19th (Lumbar Puncture). Therefore Tomorrow will be the first IV with Mesenchymal Stem Cells of another type).

I must also precise that the morning IVs are seasoned with Glucose and Sodium Chlorate (saline water).

After 18:00 we usually take a walk outside the building, having a Coke or Coffee, then back to the room where I try to keep up with messages and blog. Meanwhile Mikalina prepare or go to fetch our dinner and before 20:00 I have to be put in bed because Mr.Yang leaves.

I also try to massage and exercice my arm, legs, joints at each opportunity because the most work is there I am convinced.

Day 6 – Saturday and Closer to Heaven

Tiantan; the area where the hospital is located; means Temple of Heaven. After looking at the Google map of the area we knew we were close to Tiantan Park and the said Temple.

Saturday and Sunday; the PT room is close for machines cleaning, maintenance etc… I suppose some can also rest as I swear this is a hard job to do from 08:30 to 17:30 – Very Physical.

Thus we had the good ol’IVs in their plastic pints and suddenly all seems empty.. As an alternative I had hyperbaric treatment. It is not a kind of couffin where I could lay down and rest but…

I’ll try to describe. They fit a kind of inflatable suit on your legs ankle feet (each side separated with 4 cushions) and it inflate; deflate sequentially and alternatively roughly 3 times a minute.. Pretty strange sensation and due to the very bad shape of those parts in my body it was actually painful (I could not stand it on my right foot). It stays an hour and it seems like forever as you have to lay down.

But it finishes and as I’m not the kind to go back from adventure; I suggested we try a walk to the close Temple of Heaven.

First “Clash” with the caregiver: “too hot sunshine too far too dangerous too…”. Mmmhh.. Ok; I let him know he can get an extended lunch since afternoon was free of activities. It is the first (and maybe the last) time I see Beijing I will see as much as I possibly can of it.

We then pretend to the nurses we’d like to eat something outside (tough job but she finally believe ~or~ gave up) and out the gates we are… Mikalina must have that envy to see or experience things like me because we were accomplice in that ignominious crime of disobedience with the “well-thought-for-you-system” that characterize pretty well the beautiful country we are journeying in.

On the road (about 20 minutes pushing a wheelchair in the sununder the trees) the avenue is quiet; very few peoples, some bicycles, mopped, taxi-cabs and other vehicles I’d hardly describe but that fits in a cyclist-only lane. Beautiful trees border it and the road outside is not busy, there are cars; but nothing like I have seen on the TV about Beijing. But I haven’t seen much, so I can’t really say; just describing as honestly as I can.

There we arrived. It is big; huge. I will try to upload some pictures but it seems going  for as long as the eyes can see. It looks really nice and well maintained. Unfortunately; we tricked the nurses for a lunch and as this is a “trial escape” we don’t want them to get suspicious. Therefore; we slowly retreat to the safe environment of the PuHua North Ward Room 17.

A bit later; our guardian came back and no one noticed. We bragged of course; letting him understand he’s chicken when a 20 years old girl can make what he said was “foolish”.

I rest my case but I believe he will have to adapt or spend his duty time alone sleeping in the room…

 

More later….

 

Day 5 – Friday and all is Fine

All is fine so far.  I have got my fix of IVs, my PT and TCH acupuncture as usual.

I had a heart echography to reassure the Doctor that his ear-piece was really worn out. In fact I had a heart pounding chest in the morning but I blame the week-long constipation for it.

All results cleared the engine.

Real result of that complain was a purge given by the nurses to empty my intestines. I can not stay sit on the toilets therefore you may imagine the rest…

We had a short promenade and dinner after that, then sleep.

Day 4 – First MSCT

Morning was as usual; except I had to miss the PT session of 11:30 because it is my first MSCT.

It is very short and very long… Procedure to inject the stem cells lasted roughly 20 minutes; they picked me in the room at 11:00 and I was brought back a bit before 11:30.
Now the long part is that I have to stay supine completely horizontal for 6 hours…

They transfered me from my bed to a litter and we went to the Operating Room. No one else is admitted and pictures are strictly forbidden, so I can’t tell much of the equipments and of the way they proceeded. As for me; I had to bend forward, knees to chin (well; toward the chin). I just felt a subtle sting in the middle of my back for the local anesthesia and the rest was entirely sensation-less. Back to the room I watched the ceiling until 18:00 and then gradually sit back. I had the acupuncture session tho since it can be done either sitting or laying down.

I felt absolutely nothing like headache, nausea or other inconvenience already reported by other patients. As a side note; they said it could be different each time so I just consider this one ‘lucky’.

Just a 20 minutes walk later the evening; we ordered some Korean food which was pretty good from a small restaurant in the neighborhood.

And bed early 20:00 because our caregiver has to go home and to put me in it before. I try then to communicate but my handling of a mobile in the bed tend to force me reading e-books instead. When Mikalina call it a day; she turns off the lights and I rest in Morpheus’ arms quickly…