Archive for October, 2008
It was a long trip home , we got a complimentary upgrade from coach to Business Class (on United) from Bejing to Chicago, so it was an extremely comfortable (posh) long trip home. I wasn’t feeling too great when we left, so leaving was bittersweet. I didn’t want to leave feeling as dizzy & off balance as I was. I felt like I really let Deena down, I mean she went into this with all my talk & research of great things happening, and here we were leaving after 25 days with little improvement. I’ve been home for two days now, I still get really tired at like 2:30 – 3:00 p.m., and usually take a 1-2 hour nap.
okay, okay I feel really good. My balance is getting better, I actually visited and did a few errands today withOUT my walker. It wasn’t pretty, but I was solo. I start PT on Monday…I can’t wait. I made an observation on my walking that I’m hoping I can learn to correct…my hips round out with my steps, in other words my steps come from the side, instead of from underneath my torso. My speech has improved greatly, my handwriting is now legible, I can still squat ! Look out – Here I come- FAILURE IS NOT AN OPTION. Can’t knock me down! I’ll update blog 1/week for a little while. Stay tuned….
October 17th, 2008
It’s 6:30 in the morning here, and last night I layed awake thinking about everything that we’ve been through the past month, and was trying to make sense of it all… The questions that kept going through my mind were “Was it worth it?”, “Would you do it again?”, “is it what you expected?”, “Are you better?”. Questions 1&4(and 2&3) really kind of go together. Honestly, I thought I’d be a lot better than I am. I definitely do notice small improvements in my speech, handwriting, balance (being able to correct/catch myself), slowing down and being a little more grossly coordinated). My walking/balance has gone through some changes (bigger strides w/ walker), but by being so careful in a tile and concrete unforgiving(to falls) environment, I actually feel like (close, in-room) walking has gotten worse. I’ve maybe fallen 4-5 times since I’ve been here(the whole time-24 days), while at home, 4-5 times a day is a good day, so that’s an improvement. However, I have not been able to do anything for myself for a month! Deena is truly an Angel in disguise. She does it all! There’s a kitchen here for the patients (and caregivers), and honestly, Deena let me make toast the other day for us.
…it’s now 6:00 p.m. back to the questions above, (I’m a little rotten-biased because I happened to have a REALLY crappy day) Would I do it again? That’s a really loaded question. The staff here talks about a 75 day waiting period (which DOES make sense) where you should/will see improvements, maximum benefits if you are involved in therapy to ‘train’ your new cells. I wasn’t one of those that came in with a walker, and ran to the airport, so, you’ll have to wait for a follow up blog entry at the beginning of next year for the answer to that one!
Was it what I expected? Nothing can really prepare you for the cultural and food differences, but as far as the ‘Stem Cell Rehabilitation Clinic’ goes, I really expected a lot more. The ‘fact sheets’ I received talked about an individualized rehabilitation plan to meet your needs, and it mentioned Speech therapy, occupational therapy, physical therapy, electronic muscle stimulation, ADL (activities daily life), and traditional chinese accupuncture and massage. Well, everyone got accupuncture, one 45-min/day PT session, and electronic muscle stimulation. Each of those three were individualized, but that was it. For some reason(I didn’t read or see it anywhere), I expected a state-of-the-art exercise facility(after all, we’re talking cutting edge medical treatments). I found an abandoned exercise bike in a 30Cdegree room upstairs.
I learned to quickly alter my expectations…we’re here (in China) for the stem cells, and for the successful transplantation, engraftment, and proliferation. We can (and definitely should) get all the other stuff back at home, but let’s dabble in it while we’re here still receiving our treatments.
FYI: In my 25 day stay here in Qingdao, I had 1-IV Stem Cell injection, 4- Spinal Stem Cell Injections, 15 accupuncture sessions, 10 PT sessions, and 10 Electric Wave Therapy sessions.
October 13th, 2008
Not a lot went onto today. I couldn’t get accupuncture or PT ’cause the staff was not here! I stretched for a little while, rode the bike for a little while, and walked the hall (w/o walker) with Deena up &back. I get so frustrated, 1.because It’s so hard for me ,2. 100% of my focus needs to be on walking, and 3. I get so tired so quickly. I’ve exercised my whole life, what’s up with that? Overall, okay-good day today. My ears have been blocking up off and on all day today, I’ve gotta find out why? Another free day tomorrow, full day Monday, Home Tuesday!
October 11th, 2008
It’s 5:30 a.m.- done sleeping. Sick of lying down. Back is sore, I know that’s normal. Can you say “ibuprofen”. Okay, on my schedule, I’ve got SAT/SUN FREE. I’m going to exercise my ‘Cunha’ nature, and at least get accupuncture and some PT in! Boy, are they going to be counting down for when we leave! Ahhh, home. I can’t believe we’re almost done – Thank you everyone for all your blog comments and e-mails, I can’t tell you how much they mean to me. They keep me going!! See you all soon (I leave on the 14th). Stay tuned for the last couple of blogs!
October 11th, 2008
9:30 p.m.
I just wanted to let everyone know that the last treatment went fine. It was a little more difficult for me because I was ‘awake’ the whole time during the procedure. Don’t cringe, I had the normal amount of valium shot via IV. (I have absolutely no idea why this just went italic- well this will be short- so go with me on this). It was a LONG six hours this time…didn’t sleep much. Really tired now, back “aches” already, thank god no headache, but both ears are blocked (gotta figure this out before sleeping) – I’ll write tomorrow morning,,
October 10th, 2008
“Normal” day today: accupuncture, PT, electrocution. I was tired today. Really starting to miss home and just being ‘active’. Tomorrow is my ‘final spinal’ treatment. My ‘new’ brain should be complete around the first of the year. In the meantime, I can/will be training my multiplying brain cells coordination, balance, and of course walking exercises. The nurse just came in and told me my spinal is at 2:00 tomorrow, that means I can get out of bed around 8:15 p.m. BRING IT ON!
Can’t knock me down
October 9th, 2008
I had a great day today! When the team of doctors that come around on morning rounds came in, I showed them my newly discovered ability! I can squat fully down (like when you’re shopping for shoes and you want to see pair on the bottom shelf before you decide to pull it all the way out & up), and then come back up again, without falling (or rolling) backwards! I also walked a bit (don’t get excited), then turned around kind of pirouette style (now you can get excited- I am). I am still not walking without my walker, however, I pretty much made it clear this morning to the doctors that is my goal. They all were excited (for me & their treatments). They filmed me at this morning’s performance. Apparently, they have a before, during, and after treatment video that they show you. As for the walking, we’ve changed my PT exercises a bit – I still need to improve my balance, then, the walking can be re-learned.
Accupuncture was accupuncture this morning, poor Brandon was inconsolable. Can you blame him??
We went to the market, it was actually peaceful (we’ve been here entirely too long). Well, another first for me today. We were getting a little light on RMB (Chinese $$), but enough to be fine at the market. (We had given an interpreter USD to exchange earlier in the day- but he hadn’t come back yet). Well, when you go to the food market, it’s also a shopping mall. So, Deena and I just started looking around, basically I’m convinced that there are 4 types of stores: 1.Jeans stores 2. Shoe stores 3. bag stores (leather) and 4. Jewelry stores. Well #3 got us this time. We picked out what we wanted, got to the register, and realized we didn’t have enough Chinese money! So, I tried to pay with my VISA card and the girl said it had to be ‘Chinese card’ (wait until I contact VISA). Thank God for my electronic translator. They’re going to hold the bags until 5:00 tomorrow for us.
Wait a minute…I’m not done yet. So, we go into the food market, bought a few souvenirs ( for about 1/3 of the money that I had on me- you have to pay at a different register right away). Get our food items, go to checkout, and I start counting how much RMB I have. I’m watching the register total, and the items left to be scanned, then I had to play charades to get the girl to stop, and put back a few items. I have never had to do that. The cashier smiled and obviously understood, and we got it done. I apologized profusely (in English AND Chinese). And we were off! You’ll be happy to know that the interpreter gave us our RMB (and he got a great rate). So, we’re all set !
PT went well today, stairs, walking over obstacles (not as good as yesterday), and a fun new exercise where I stand feet wide on a rolly, polly board (it’s kinda like a board with 1/2 a ball on the bottom) between PT bars that I can grab onto if I need to, and Tom (my therapist today) threw a large stuffed ball at me to catch it. It was fun, and I was good at it!
Electrocution doesn’t phase me anymore. Sara said they use it at Spa,s to get rid of cellulite. Okay, okay, why can’t they strap it to my *ss!
We ordered dinner tonight, Chicken and Rice (not spicy), we got Fried Rice – Try talking to a chinese delivery man about ordering something different than what you got. We got Chicken and Rice across, Deena just laughed and said,”it’ll be hot (spicy)”. Oh well, there’s always PB&J!
Next (and final) Spinal Treatment is Friday – BRING IT ON!
Can’t knock me down!
October 8th, 2008
Full day today of rehab stuff, starting with accupuncture – I had a little boy, Brandon, next to me today, he’s probably 7-8, having treatment for the first time, scared as heck, and crying with the needles in him. Well, I lied down on the treatment bed next to him and said, “If it means anything to you, I cried the first time too. All I can tell you is it hurts less and less each time you come, You know what helped me? Big deep relaxing breaths,” He took one and I said “Phew, you gotta make sure you brush your teeth before you come” Well, he broke into hysterical laughter, and his Mom took over from there. I don’t know Brandon’s story yet, but he is in a wheelchair… I consider myself lucky – I can use a walker. There are now 7 children on our floor
Went to PT this afternoon, I went up the PT (4) stairs without holding on to the railing, nice and slowly! I can come down the stairs starting always with my left foot and not hold on, but the minute I start with my right, it’s weird, my whole body shifts, and my foot slaps down on the step. The biggest accomplishment for me today was stepping over the obstacles set up..left,right,left,right,left,right. They are in varying degrees of height, so you have to sometimes lift your foot higher. I did up & back 3 times, nice, slow, and controlled, and only had to grab the bars once!- Andy, my therapist even got excited (he never gets excited-and oh, by the way, he loves Deena) My balance still continues to be the same. Some good days, some not so good. I talked to Dr Frank (who understands/speaks pretty good english) to talk to Andy about my wanting to walk. I know there are ways to learn how to walk again. Knees bent, foot position, hip position, arm swing, etc. I’m not a therapist by any stretch of the imagination, and if I need to keep doing these balance exercises first, so be it. BUT I told Dr. Frank, I have 1 treatment left, and we’re leaving in one week…I want to walk! I think he communicated it to Andy so he understood.
Onto electrocution. On the table next to me is Luke. Luke is 7 months old! He is the cutest, most mild mannered baby I’ve had the pleasure of meeting. Electrocution is getting easier, they hook you up, thighs and calfs, jack up the waves until you say stop, and about 20 minutes later, you beep, and you’re done. Luke almost fell asleep working his binky…
Deena had another accupuncture session on her knees today (#2) (yesterday I told Jason, the accupuncturist here, that she has arthritis in her knees) He’s going to try and help.
To sum up today, okay day, back ache (from spinal – ibuprofen helped a lot), could (and will) be a lot better…I’ve gotta do a lot more on my own (I get tired so quick). Oh, Deena and I found some walking paths on the side of the hospital. We’ve been doing them whenever we can! FAILURE IS NOT AN OPTION
Dad, Can’t Knock Me Down!
Uncle Eddie – Happy Birthday!
October 7th, 2008
It’s almost 12:00 midnight here. I had my third spinal today. I haven’t figured out what they think of me here yet. Let’s see if I can explain: On treatment days, they put your IV in your hand around 12:00 ( it doesn’t matter what time your treatment is, everyone who’s having a treatment that day, gets their IV (port) at 12:00. Let me tell you, I am a baby when it comes to IV’s, so, I brought (borrowed from Morgan) lidocaine, which is numbing cream. I am proud to say that I have been toughing it out without the numbing cream (okay, okay – not by choice, I’ve pretty much handed it over to two of the children’s parent’s here to share-call me a softee, but I can’t imagine…), the nurses here are very good, they haven’t missed yet…until today. The nurse felt so bad, she kept apologizing. She got it the second time, and was still apologizing about the first! The whole time I’m thinking, hell, I’ve had stitches/novacaine in my head/face 3 times, broke/lacerated my nose bridge, cut two arteries in my leg, along with stitches in two other places in my leg….all in the past couple of years. This is nothing!
Then, at about 1-1:30, they hook up your IV to a glucosa bag (sugar water). When I got here I kept talking about Saline, well, they don’t know what that is…Dr. Bing and I finally figured out, here, glucosa = saline)
I should mention that gloves are not used here. (I think I might have seen the doctors in the OR -spinal room, but I can’t be positive) Call me neurotic, but I have alcohol swabs and anti-bacterial handi-wipes right on my nightstand, and the nurses know what to do with them before they touch my hand (all it took was one charades game at the beginning of our stay).
Then, at your scheduled time, they wheel you off upstairs to the OR. Sometimes they have to queue 1 person up right outside the OR in the hallway, but you are never left alone. Well, I sit up and chat with the staff member assigned. The topic of conversation is always the picture of Morgan & Collin I have with me. Today, Lucy, one of the translators said to me,”You are not at all nervous.” I told her ,”This is what I’m here for, to me, the rest is fluff!” (I still think she’s trying to figure that one out – ha ha)
Thanks to my friend Liz, and my Auntie(s) Ruth and Missy, (and to go without saying, my god sent Angel-Deena), I’m back! I’ve got 1 week , and 1 treatment left to blow the lid off this place. I have a card sitting on my desk at work that has a shark fin strapped to a goldfish in a little fishtank, and it says “Attitude is Everything”. Ain’t it the truth!
Hey Dad, if you’re out there “Can’t Knock Me Down!”
October 7th, 2008
Last Free, LAZY, feel sorry for myself, terrible balance day! Deana got me outside- it was a beautiful day! We walked around some walking paths on the hospital grounds. It was really nice (and relaxing). Then we sat outside on the bench in the rear entrance until it started to rain. We sat in the common room and talked with all the new people that have come in. Or should I say ‘parents’ who have come to give their children some type of an ‘edge’ to grow up as normal as they can. We now have 7 children (ages 7 mos – 5/6 years). Boy, it really puts things in perspective.
Deana must have put some magic in the hot dogs (we actually found HORMEL hot dogs) we had for dinner tonight. At about 7:00 p.m. tonight, the dizziness that’s been in my head all day disappeared! I’m back, and boy do I feel good. My head is clear, my steps are deliberate, my legs are not shaky. I’m actually going to do some balance exercises now. Tomorrow I have accupuncture in the morning, and my 4th treatment (spinal #3) in the early afternoon. Gotta keep my head down for 6 hours after treatment. I’m not sure if I’ll have a chance to blog…BRING IT ON!
October 5th, 2008
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