Spinraza dose three, part two.

We got up on time, but took longer than we should have getting out of the house. We got to Stanford a little later than we planned. Scheduling my doses is odd at Stanford. They have some computer difficulties that doesn’t allow the scheduling computer to reflect reality. So we do this weird phone/email dance where my appointment reminders are all over the place.

My appointment was rescheduled to yesterday at 10 AM. The staff want me to be at radiology an hour ahead of time. So for me, that means 9 AM. When the automated reminder system kicks in, I get 10 to 15 reminders. None of which are 9 AM. I get 8:30 AM 9:30 AM and 10 AM, but no consistency. Consequently, I just go by what Connie tells me and I’m usually fine. It is amusing though to get all these reminders that don’t really help much.

We got there at 9. Without much of a wait, they got me into radiology, transferred me to a gurney and I started waiting for the doctor. There was the usual confirming what medications I’m on, and making sure I hadn’t eaten before the puncture. The doctor showed up about 15 minutes after and we did the legal dance of her telling me the possible effects of the puncture. It always makes me smile when they inform me that I might bleed. Really? You’re sticking a sharp object into my body and I might bleed. I’m boggled, are you sure?

The staff, with loracs’s help got me transferred to the gurney and then to the florescope. I insisted that they leave me on the gurney until the doctor was ready and the staff made sure everything was set to do the procedure before the got me on the florescope table. The hard, cold, florescope table. It didn’t take too long to get me positioned properly except for dealing with my arms. They need them up above my head which is a position that my body is decidedly not designed for, but using tape, they can get me where I need to be.

I had been assured that the doctors had looked at my CT pictures from my previous doses and were ready to deal with my unique anatomy. They are always very aware of avoiding the pain of the needle going into my body, but that’s never really the problem for me. The needle and all the probing to find the magic spot isn’t ever really painful. Uncomfortable, on occasion, and I do occasionally get a jolt that isn’t exactly pain but isn’t fun. None of this is a problem for me. The issue for me has always been the position I have to be in for the procedure. The hardness of the table I have to lie on and how very long I have to be on the table. Both of my previous doses succeeded after I was long past my ability to cope with the pain. Both times I was on the verge of quitting when they finally got in. This time was no different except that I endured the 2+ hours on the table and they didn’t manage to get the Spinraza into me yesterday. This is the third time that the procedure didn’t accomplish what we all intended.

I feel like I need to say again and again how wonderful the staff has been at Stanford. The doctors and nurses and orderlies have just been fantastic. They all understand this is difficult for me. I understand that the one reliable entry point into my spine is a very small and complicated target. The doctor doesn’t just need to get the needle to the hole, with all of the calcification because of a long life in a wheelchair, the angle and approach has to be just right. I can’t tell you how many times I heard them say, "we’re almost there just another second..." And they still couldn’t manage to get to the spot. Everyone did what they could do to make this whole thing successful. I’m just a really hard “stick”.

I felt like a failure as I often do. I know this is not a rational response. It’s not like I could do anything to make it easier for them to succeed except to do the best I can and stay in a painful position as long as I can. However, it is always me that says I can’t do this anymore. I feel like I’m calling it off and if I could just hang on a little longer it would be successful. Everyone at Stanford says I do as much as could be expected and I try to hang onto that. This does not prevent the reality that I’ve got to go back to try and do this *again*.

I will say that some of the stress has been eased after talking to Dr Day. He has been involved in Stanford’s Spinraza injections, but we had never met until today. Connie was usually the one giving me the Spinraza, but she was on vacation. Imagine that, going on vacation when I need her. The nerve of the woman. :-) Anyway, I had always worried about maintaining the schedule of injections. I had been told they had to be two weeks apart to the day with a day or two latitude. Dr Day says that the operating procedure is every two weeks for the first three shots and then a month for the final loading dose. However that doesn’t mean there’s a problem if a dose is delayed a little. After not succeeding this time, all the doctors working on me yesterday have suggested I get Spinraza with the assistance of CT. Now I’m waiting to reschedule the third dose as soon as they can get me an appointment.

My family has a family belief. That goes something like this. Thomas’s always get what they need, but they very often have to go the long way around to get it. I feel like I’m holding my end of our belief system. I do think I will get all the loading doses eventually. I’m also not surprised that my journey is the longer way around.

I’m recovering now. It will probably be another day before I start feeling normal. I’ll let you know when I’m scheduled for my third dose. Meanwhile, I hope everyone is having a better time or at least as good a time as is possible for you. *Sigh*