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Vague Wisdom
Adventures in Gimp-dom
About 9:20 AM this morning, my mother came to the end of her life. It was not unexpected and I think she went as peacefully as possible. I signed the paperwork to have my mother given hospice care on Wednesday. Friday, my sister Cheryl called saying that the doctor didn’t think Mom had much longer. [personal profile] loracs and I went to see her and stayed most of the afternoon. She recognized me when I arrived and immediately asked where [personal profile] loracs was. (She happened to be right in front of Mom but it hadn’t registered for some reason.) As the afternoon wore on she slept more and more. By the time we left late afternoon, she wasn’t interacting with any of us much. The hospital room wasn’t large and there was plenty of family around. My two sisters, my baby sister’s husband, my brother, [personal profile] loracs, my niece and both nephews and even my great-niece. I had felt largely in the way most of the afternoon. I could’ve stayed longer, but I felt like I’d said my goodbyes to her Wednesday and staying didn’t seem helpful to anyone.

I don’t know if my mother was ever really proud of me, but she did love me very much. She loved [personal profile] loracs and I even think she was fond of [personal profile] serene (even though I don’t think she liked the whole arrangement. :-) She was given the impossible task of raising a severely disabled, stubborn child along with three other children and managed as well as she could. She was a keypunch operator, a bus driver, factory worker, and hotel housekeeper. She did what she needed to keep us safe and healthy. She lived through long lectures from her son on his homework or latest interest. I’m sure that many of those conversations she could barely follow or care about. Yet she always seemed genuinely interested in my silly schoolboy theories and passions. I know I put her through several kinds of hell. Hopefully, she's somewhere arguing with her mother and petting lots of dachshunds and Boston Terriers. Drinking hot cocoa, bowling, working on jigsaw puzzles and watching television. I will miss her so much. I love you Mom.

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I’ve had trouble writing the last two posts. I’m a slow correspondent, what can I say? I’m not sure this post gets to what I wanted to talk about, but it’s close. I may work on it some more, but I thought letting people know what’s going on was more important than perfect communication.

On September 5th, I received my last loading dose of Spinraza (Huzzah!). After six tries and four successful injections, it seems that I have learned how to advocate the best circumstances for success. Pain meds help in allowing me to stay on the table longer and the longer I can stay there, the more chances for a successful lumbar puncture. The pain meds also help with recovery. The first few times we tried an LP, successful or not, it took several days for me to stop feeling sore. I also make sure I’m not put on the table until the radiologist and doctor are ready to go. That way they have the most time to get the needle where it’s supposed to go with as little pain as possible. So although the last loading dose took a couple hours before it was successful. It was successful!

Most of the staff were new to me. I started explaining what needed to be done and the staff were paying attention. After a bit my morning worker started taking over just by saying things like, “Wasn’t Guy’s wheelchair parked over there and you brought the lift over here?” Basically, asking questions that clarified my instructions. After a bit it was fascinating to watch. She knew me and she has been through this dance with me several times now. She knew what had worked. So I let her take over the logistics. As usual, the staff followed directions and were concerned with my comfort.

I have been paying attention to any physical changes since the treatments began. I didn’t feel much at first. Except that my breathing is easier. I’m worried that the improvement is just a placebo effect. I want to feel like all this effort amounts to something. Seems like the beneficial effects of the treatment are so subtle. [personal profile] loracs and I will be the only ones to notice.

I’m really looking forward to the next pulmonologist appointment. Then I will have some objective evidence that I’m actually improving. Until then I keep racking up observations. Along with stronger lungs, [personal profile] loracs has noticed the grip strength in my left hand is stronger. I feel some strength in my arms, but it’s not like I can suddenly raise my arm above my head. It seems like I can gesture a little more. I think I have a little bit more motion in my right hand when I use my trackball. Nothing I couldn’t do before, but it seems like I can do it longer and with less fatigue.

After the third dose, I noticed that my neck seems to be stronger. Driving in the car is always a bit of a roller coaster ride for me. I can’t hold my head very well, so it flops around a bit. I try to ride in the car in a reclined position, but that cuts into the sightseeing. I usually alternate between reclining and sitting straight up. Still, my head flops around more than I like. I’m noticing now that I can keep my head up most of the time. I also noticed that I can lift my head off the bed if it is at a little angle. I can’t lift it from completely prone. I don’t think I could lift it at all before the Spinraza.

On the possible negative side, I’ve noticed some tension headaches since the fourth dose. They don’t last long and they could just be hay-fever. The pain is similar, but I notice it when I’m being impatient or a little pissed. I am not at all sure if this is related to the drug. That’s about all I’ve noticed at this point. I think I’ll be getting a follow-up appointment in the future. So they can see where I’m at and decide what to do. I may get some physical therapy. (So I can look buff.)

On the reimbursement front, I received one of those “this is not a bill” statements from Medicare. It seems to say that all the hospital stuff is covered, but it doesn’t specifically say anything about whether the Spinraza has been covered. It even says that Connie’s services are covered but nothing about the drug. Connie seems optimistic they will get reimbursed. I’m disconcerted, but I’ll cope. Thanks everyone. I’ll keep you in the loop.

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Second try on the third dose, done!

After last Wednesday’s fail, I talked to Connie about options that had been mentioned. She really didn’t like the idea of the CT assist because of the additional radiation. Since the plan is to continue getting Spinraza regularly; needing a CT assist each time would quickly get me glowing in the dark. :-)

After a couple LP’s, I’d come to realize that some pain medication would help me. When I discussed this with Connie prior to my third dose, she thought, I was trying to treat the pain after the procedure. I am sore for a couple of days afterward. Actually, I’m much more concerned about the pain of being on the fluoroscope table. I thought that pain meds might allow me to stay on the table longer and with more comfort. Thus, giving the doctor as much time as possible to get the furshlinginer needle in my spinal canal.

I don’t do pain medication much at all and with my weak lungs, Connie worried about how pain meds would impact my breathing. She suggested Tylenol. I really didn’t think that was going to touch the pain. So, she offered a small dose of Vicodin. She wrote me the prescription and I picked it up Monday evening. She had suggested I try a dose Monday evening and if it felt okay, to use a dose before the lumbar puncture Tuesday. I ended up taking Vicodin in the waiting room before the LP.

Perhaps it’s a bad sign to go to the hospital often enough to start knowing everyone’s name. One of the nurses who had introduced herself at my last LP attempt asked if I remembered her name. I had forgotten the name, but I tried to play it off by saying that she didn’t look like a Hailey. She asked what name she looked like and I said Sarah. So she asked me whether I remembered her name to see if I would call her Sarah or not. Previously Carol had suggested thinking of Haley’s Comet would help me remember which of course it did. So now Haley is permanently in my memory.

As we walked back to the “staging” area. Basically where I transfer from my wheelchair to a gurney before going into the fluoroscope room. She commented on the blanket I had over my arms. I use it to you stay warm because it’s easy to take on and off. For some reason I hadn’t used it for my first attempt at the third dose. Haley suggested it was my “lucky” blanket and that this time we would be successful since I had remembered to bring it. Perhaps she has a point, because it did work this time.

At first, it seemed I was doomed. I heard too many familiar comments of failed attempts: “We’re almost there…No, that’s bone…Let’s go back to 70, maybe that’s a better approach…That hurt? Sorry sir, did it feel like your back or did it go down your leg?...Bone again”
After almost 2 hours they decided to try a completely new angle and I had just about decided I couldn’t take it anymore when I heard my doctor say, my new favorite words: “I’m in.”

I quickly responded with a “You have to be shitting me!”
“No believe me.”
“Hey, I’m sorry for the language.”
“Oh no need, you just said what we were all thinking.”

After thanking everyone profusely I headed back to get transferred to my wheelchair. Haley brought me some cookies she had made. They were a chocolate chip cookie/s’more mash up that tasted quite good. She told me there were three there. One for me. One for Stacy and one for Carol. She told me I wasn’t allowed to eat all three :-(. Anyway there were lovely cookies and it was very sweet of her.

As I’ve said before and I will continue say, everyone there at Stanford has been so very supportive. I feel like a real champion leaving the building with all the fuss they make.

So now it looks like one more in a month and I will have all of my loading doses. After that I’m not sure what happens with continuing treatment. They don’t know about reimbursements because Medicare is being less than cooperative about committing. Everyone at Stanford seems positive that things will work out. I tend not to be that kind of guy. So I will be cautious until I actually get a real OK.

Now as far as whether the Spinraza is doing me much good. There is very little objective evidence. I will be getting my lungs tested by the pulmonologist after the loading doses. If there is as much improvement as it feels like I have made. It will be documented with the test. [personal profile] loracs tells me she thinks my grip is a little stronger. I do feel like my arms are a bit stronger, but it’s hard to prove. I think I’m making more small gestures with my hands as I talk. Many more gestures than I remember doing in a while. This could all be wishful thinking on my part. I’m looking forward to some third party corroboration.

I’m sorry this took so long to post. I just couldn’t make it work and I’m still not sure I like it, but here is. Now onto September 5 for the fourth and final loading dose. Hoo boy!

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10:3710:37 by Jacqueline Druga

My rating: 2 of 5 stars


I'm guessing this book was self-produced. I'm getting a little tired of this, mainly because things like spelling and punctuation get missed. Some copyediting by a skilled editor would be nice. I didn't buy the explanation of why the world lost so many people. I didn't like the sorta kinda zombie stand-in in the story. I thought the loss of a character was not given enough background to make it important. So the death seems arbitrary. It was a quick read however and I like the subject matter well enough to finish the book. I just wished it was better.



View all my reviews

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I have been trying to write about my second attempt at the third dose of Spinraza and haven't been satisfied with the results yet. I realize there may be some of you that are worried (or maybe I elevate the concern people might have). So, I should let you know that the third dose was successfully done. I have one more to do and the loading doses are done. I will eventually post in more detail. When I can.

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Looks like tomorrow I go back to Stanford to try again for the lumbar puncture. After last week's attempt there was talk about using the CT to do my lumbar puncture, but that takes a lot of radiation. Using the CT on a regular basis doesn't sound like a good solution. Connie recommended that we try again with a doctor who successfully did my puncture before (actually my first lumbar puncture). So I will be in Stanford tomorrow at 11:30 AM for a second attempt on my third dose. Then I have a month before I have to take the final loading dose.

We did ask Connie about how the delay in getting my third dose will affect the effectiveness of the treatment and they just don't have data for that. She and Dr Day are optimistic that this won't be a problem. We also talk to her about getting pain meds to help with the pain of laying on the table for so long. She's concerned with how the pain meds will affect my breathing. On her suggestion, I'm trying Vicodin tonight to see how I feel. If it goes well I'll take another Vicodin before the procedure. If it doesn't, I'll do what I have been doing and gut it out.

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At this point it's difficult to tell whether I'm getting better or worse. I think on the whole things are improving, but never long enough to be sure. Tapering off of prednisone, I called the on-call doctor yesterday to talk some things through. I'll start using my nebulizer more frequently. Somehow I had the impression it was a bad idea to use the albuterol (for the nebulizer) with prednisone. She assures me I'm mistaken. So I'm using it about every four hours on a schedule. My breathing isn't as deep as I'd like, but it's a fairly easy breath. My breathing is a bit noisier than I would prefer. :-) People should feel free to ignore these emails. I think better out loud and since I use voice recognition some of this writing is me thinking out loud.

I should let folks know that I was off-line most of yesterday because of a technical glitch that has been resolved. Being sick with no Internet is not my idea of a good time! I hope everyone else is having a much better New Year. Thanks to all who are thinking about me. I know that I am not the best blogger/correspondent. I tend to "go silent" when I'm not feeling well. These posts are also an attempt at correcting that tendency.

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With a lot of three steps forward, two steps back, I seem to be improving. Doctor put me on prednisone for my wheezing and it seems to help. Talked to the doctor about my use of Xanax for panic attacks and she seemed to think I was using them well and as intended. I went without Xanax at all yesterday, but found myself using one about an hour ago. It's hard to tell if the breathing is getting better today or not. I am able to breathe pretty well, but still wheezing more than I'd like. Actually went out for dinner yesterday. So, I'm still kicking. I hope everyone else is doing well.

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I often write in this thing when I feel depressed or anxious. Please feel free to skip this post if you have had your fill of self-indulgent whining. I've been in relatively good health this year, but just got a cold a few days ago. So far it's been pretty mild and I hope I'm on the getting better side of it all. The cold isn't that bad, but it really brings back my panic attacks. I cough up anything and my head is telling me I'm going to choke. I'm going to die. Now I'm pretty sure that I'm overreacting, but it still feels real. I do have Xanax, which helps me get to sleep. I guess I just want to tell someone that I am worried. Don't anyone feel they need to do anything about this. Often just saying things out loud or writing them in public helps to get them in perspective. I hate being so afraid.

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I voted for Nader. I'm a Green and I will vote for Hillary Clinton​.

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