Reflections, on our way home from Delhi…

As I sit here 38,000 feet above Afghanistan winging our way toward Newark, I find it difficult to believe that we were in India for two full months…nearly 17% of 2009.  Words can’t describe…crowded, chaotic, cathartic, joyful, tearful, noisy, odorous, awe-inspiring, heart wrenching, mind expanding, thought provoking, inspiring, defeating,  giving, depleting, supporting, undermining, sensual, hopeful, hopeless, overwhelming, unrelenting, hot, humid, acrid, intimidating, generous, greedy, caring, polluted, misunderstood, underestimated, inefficient, confused, ancient, youthful, beautiful, grotesque, confusing,  mysterious…the list could go on forever and India is all of this rolled into one.  It unfolds itself to you piece by piece and you cannot rush the discovery nor slow it down…it has it’s own pace and it seeps into you in ways you never imagined.  It assaults and enlivens your senses all at once and the only way to really view it is in reflection…the layers overlap and overwhelm and seep into you slowly…slowly…only time will grant perspective.

Now that we are actually here at home, it is already difficult to place myself back in that space.  It all seems surreal and life pours itself  over you in a deluge.  The trip home went smoothly, flights on time, luggage all present, car started right up!  We arrived here to find flowers, welcome home notes, freshly made cookies and a bottle of wine on our doorstep and some groceries and dinner already made in our refrigerator thanks to our wonderful family, friends, and neighbors.  Now the focus must be on going forward with the work that needs to be done to get Bret back on his feet.  Long road ahead…………….

OR nurses bring Bret back to room to rest following final procedure

Bret had a busy day today…he started morning physio early to be ready for the taxi that came at 10am to take us to the imaging center for his “exit” MRI series, then we returned just before noon and ate lunch to prepare for his scheduled 1pm Deep Spinal Muscular procedure…which finally actually took place at 4pm IST (India Stretchable Time).  This, his final procedure for this trip, is an injection of 5 million stem cells into the muscle of the lower spinal area.  He’s resting now on his back for about an hour and then he’ll be good to go.  Tomorrow we’re told we will have a meeting with the doctors to discuss the results of the MRI’s and the suggested course of further treatment.  Then on Thursday there is another group meeting scheduled with all the doctors answering questions (like we had in late September). I expect that it will be as informative as the previous meeting and I’m glad we will still be here to listen in and take part in the discussion.  There are many multiple return patients here now…three from the US and one from Argentina…all on their third visit here to Nutech so I’m looking forward to seeing what direction the discussion will take and how it will differ from last time.

As Corky stated so succinctly in HER blog, our trip is nearly over but the journey has just begun…Bret is coming home loaded with stemcells, armed with exercises to continue to gain strength, leg braces to facilitate movement, and a will to walk again unaided by wheelchairs, scooters or walkers…but much work remains to be done to reach that goal.  A follow up “stem cell booster” trip to India will most likely be part of the recommended course of action since there is no US option along these lines available to us and probably won’t be for many years to come.  It makes me angry that the supposed richest, most advanced nation in the world cannot offer this treatment to its own citizens, but that we instead have to travel at our own expense out of our hard earned retirement funds half way around the world to be part of this research and treatment.  The MRI’s that Bret had today consisted of a series of three…one brain, one cervical spine, and one dorsal spine each at a cost of $125 USD for a total of $375.  These 3 MRI’s done at home in Kirkland in August this year before we left were each at a cost of $2135, totaling $6400 USD…our co-payment alone was $653…same machine!!  At home we had to make an appointment several weeks ahead, here it was made yesterday afternoon.  At home Bret was in the MRI office for nearly 2 and a half hours, here it took about 45 minutes.  Lots of food for thought in regards to the ongoing dialogue on our healthcare crisis in the US….

The chef at work in his India nightshirt

The day was very lazy and our highlight was when Matthew surprised us at about 1pm by bringing fresh, hot pancakes to our room!!  Better than ANY I’ve ever tasted…probably due to the fact that we’re in India and missing all those great, healthy comfort foods from home…I could have kissed him!  His wife brought the mix and syrup with her when she came to visit, Tracy bought an electric frying pan, and I had the cooking oil thanks to Tim and Vicki so the combination brought about the impromptu pancake feed…happy tummies!!!!  And it was such a great Sunday morning aroma wafting through the halls …

The rest of the day was filled with watching a movie, playing cards, visiting with other residents, and another tuk-tuk ride to market for the girls.  Gearing up for those last four busy days!!

Dr. Ashish administering stem cells

Well, the big three day procedure is over and everything went beautifully…no headaches or any other side effects and Bret now has an additional 300 million stem cells bathing his spinal column with their healing qualities.  He sailed right through it and made it look deceptively easy.  This procedure is done at Guatam Nagar, Geeta’s other nearby outpatient hospital, as it is the facility with an elevator large enough to transport the patient, reclined on the gurney, from the O.R. to the floor that their room may be on. 

Signing admittance papers at Guatam Nagar

Following physio on Thursday morning, we packed our “overnight” bag for our stay at our other home away from home  for the next couple days…we arrived there at about 1130am.  We were assisted out of the taxi and Bret was propelled by two men up the VERY steep ramp to access the entry door. (see photos)  He signed some admittance papers and then we were taken via the old cage type elevator to our room on the third floor.  The first hour was a rush of activity with nurses and doctors in and out of the room to prep Bret and get the IV antibiotics administered to him prior to the procedure.  At about 1245 they came to wheel him to the O.R. for the insertion of the catheter (a tube about the size of angel hair pasta) in his lower spine.  It was taped up his back and the port for injection was looped over his shoulder for easy access. 

The catheter

All 300 million stem cells were injected through this catheter over the following days.  The first dose of 50 million was injected while in the OR and then he was brought back to our room to recline on his back with legs elevated (the old “bricks under the bed legs” trick) for 4 hours.  He was able then to move about as he wished for about 4 hours and then at 830pm was given another 100 million cells in our room and made to lay on his left side (chosen because it is his weakest side) with legs elevated for two hours.  The following morning he received 50 million cells and laid on his stomach for two hours, had a break for 5  hours and then received another 100 million and laid on his stomach again for two hours.  He actually received the same amount of cells as all three day procedures, but they accelerated it and he was able to complete the procedure in only 2 days instead of the normal 3.  He said that all he really felt during the injections was first a cool sensation which progressed to a very warm sensation as the cells moved along his spine, and a bit of tingling in his extremities, mainly feet and toes.   When all vitals and everything checked out fine at 8pm, we were told our taxi was waiting and we were free to return to home base at Nutech where our dinner would await us.  Neither of us slept very well at Guatam Nagar…especially Bret as it was tough to sleep with a catheter taped tightly to his back and flapping around his neck and shoulder every time he made a move,  and then there was the fact that the bed was proportioned for someone about my height, not Bret’s 6 foot body…his head hit between bars at the top and his feet poked out between bars at the bottom!Not many tall bodies on this side of the world   We both slept in on Saturday morning so felt well rested and ready to head out for a little more exploration.  We went out front and flagged down a tuk-tuk, loaded ourselves and the wheelchair into the cramped space in back, and headed to Sarojini Market to join the throngs of locals shopping there on Saturday.  Another fun adventure capped off with an ice cream cone on the way home and then a rollicking ping pong tourney downstairs last night with Gabe, Monica, Dillon, Matthew, Bret and myself.  We played for several hours and then sat and had a great conversation going until we realized it was nearly 1am!!   Good thing Sunday is a free day with no commitments…I have a feeling our final 4 days here Monday through Thursday will go by very quickly and be very busy.  Dr. Ashish told Bret that if he was feeling well on Monday and all vitals were good that they will probably give him one more Caudal procedure on Tuesday to “top him off” before he heads home, and they also want to send him to the imaging center for a final MRI to see what changes may have taken place during his stay here.  That helps them decide how long he should wait before returning for a follow up visit and more cells…we’re expecting that they’ll say he should come back in 5 or 6 months but we will see.  

Ahley and Gabe playing ping pong!

Last night was great fun in the common room downstairs…Gabe and Ashley, both quadriplegics, had a  ping pong competition going on and Bret, Monica and Raven were “shagging balls” for them…quite a fun sight to behold!  Since they were so occupied, us girls (Tracy, Corky and myself) thought it was a great chance to get out and go shopping unhindered by wheelchairs! 

View from our tuk-tuk to Dilli Haat

So we grabbed a tuk-tuk and headed off to Dilli Haat for a few hours.  Monica actually left her ball shagging position and joined us for the fun (she left her wheelchair behind and walked the entire time in her calipers!!)   We  left about 430 and were there until well after dark.  It was a beautiful evening lit by a full moon…we found some great bargains in clothes, sandals and jewelry and it felt heavenly to just stroll at our leisure and explore all the booths. I spent a total of about $36.00 USD and got 3 hand fashioned shirts, a long skirt, 2 pairs of sandals, 2 necklaces, and 2 pairs of earrings.  Thanks, ladies, for the fun outing!  

We found out today that Bret will be going over to the other hospital, Guatam Nagar, (where he went for his epidural procedure)  for a three day procedure tomorrow morning.  We will be without internet access for a few days as there is no connection there.  Most likely our next post will be Sunday after we return here to “home base”.  Bret has actually had a bit of a tough time these past couple days with extensive periods of spasms in both legs and also some in his back and arms as well.  He’s a little concerned about the hours of laying still on his back, side, and stomach over the next few days of this procedure, but is excited to get such a huge influx of those healing stem cells before heading home next week.  He’ll be receiving  300 million stem cells through the five injections delivered over the three days.  These injections will all be administered through a catheter tube which is inserted into the spine about 5 inches above the waistline and left in place for the entire stay.  The injections and subsequent positions following each are designed to immerse all areas of the spinal cord with the stem cells which will seek out damaged tissue to repair…kind of like continuously”basting” the spinal column.   Please send out all your prayers and positive thoughts that the procedure goes well and there are no ill effects afterwards to deal with.

I’ll be pretty much room bound for the period of this stay as well, so planning to take a good book, some cards, and my yoga mat!  Should have plenty of time to practice the art of meditation………oooooohhhhhhhhmmmmmmm………………

In the morning here at Nutech, Joyti and Rita brought a little birthday cake to Bret and everyone on the staff throughout the day wished him a happy birthday.  In the evening we all gathered downstairs for cake to celebrate. 

Monica's lockable knee braces on Bret

As we were sitting there, Tracy brought up that Bret may benefit from having knee braces made up like Monica has and one thing led to another…next thing you know, Monica is unstrapping her braces and they are being fitted on Bret and then he is being helped to stand up to try them out!  We brought the walker up from the physio room and Matthew followed him around as he made a loop around the lobby. (video on Flickr…click on arrow)  They did seem to be beneficial to secure his knees so we’ll try to get a pair made up here in India before we head home next week…quite a birthday gift!  When we went back up to our room we realized the fireworks were going on so we watched as the sky lit up with brilliant color in celebration of Bret’s birthday and the act of walking!!!