Tuesday, July 9, 2013

"Kiss the day [and my hip?] goodbye..."

I have now officially been up and on my feet for 15 hours today, after sleeping only five last night. I'm resting in bed after a long bath and some straightening up, and after I finish writing, I am going to read this amazing book I am into, then...ZZZZZzzzzzzzzz.......

This morning we got our two older boys off to summer camp! Three weeks in the north of Israel (near Nahariya), on the Mediterranean sea. It is a gorgeous site. But man, it has been a long haul to get to this point. Lots of shopping for clothing, glasses, shoes, finding things, labeling everything, sewing lots of stuff (a good trick with my bum right hand), and busyness getting ready. It is a *lot* more work to get two kids ready to go to sleep-away camp than it does one. Exponentially it's lots more than double, it seems. It is Dov's third summer, and Ya'akov's first. My guys. :)

So we all got up at 5:30 to bring them to the 6:40 train.
I rode the train with them because I had to be in Tel Aviv for my appointment in Ichilov hospital.

LONG day at the hospital!

I thought my appointment was for 9:00, but it turns out I made a mistake and it was scheduled for 11:00! I got on that 6:40 train with the boys, and I didn't have to.
No, the secretary didn't try too hard to get me in early, even though I was there from 8:45. I got in a little early, but it wasn't such a huge favor. I sat, and when the plastic chairs were uncomfortable (like after 10 minutes), I paced. I listened to podcasts and story-telling open-mic sessions, which I love. I listened to Garrison Keillor, who I also love (thanks, Lee). Drank coffee, sat, paced, texted with friends, podcasts, sat, stood, talked to a nice woman at one point, and so it went, until my number *finally* came up.

This was the orthopedic oncologist. It used to be Prof Meller, but I learned today that he retired! They never tell patients here when your doctors retire. You just get there one day and find out. Has happened to me twice.

No matter, though, because the ortho-onco team is small, and I am familiar with all of them.
I thought they were familiar with me and my unusual case, also... until this doctor recommended a treatment for the after-PVNS hip joint. This treatment, a certain type of radiation injections, is one that I learned years back that it isn't a possible treatment for me, because of the skin grafts. When he suggested this treatment, I told him that I thought I wasn't a candidate for the radiation treatment because of the soft tissue problems, lymph node problems in the thigh, and skin grafts. He then looked at me and said "oh, you're the one with the grafts! Right, I remember now. OK, right, that treatment isn't an option, you're right". Ummm, hello? What if I hadn't spoken up, like so many patients don't? Really, you didn't know which patient was walking in the door? Really, you made a suggestion which is detrimental to the patient's health? Ya. Moving right along now....

Turns out that I haven't had an MRI on the left leg in almost two years. That's not great- it slipped through the cracks. I am supposed to have one every six months for the rest of my life because of the nature of PVNS. In the past few months, although both hips hurt me, the left one has been acting up, on average, more. So of course I'll get an MRI ASAP. That will take time. Then I have to get them the disk, then I have to wait for another three or four weeks for the next appointment after they have seen and discussed the disk. Only then will we know if the PVNS came back or not. That could take a long time, in my experience. But again, only God tells us when things happen in this world.

We talked about treatment options.
He, like most doctors, wants to improve quality of life for their patients. I told him how much Fentanyl I take (the patches), and he said "not a small dose, is it." Truth be told, even though the dose got raised a few weeks ago, there has not been improvement in pain this time. NOT happy about that.

So, he said, if we can assume that there is no sign of PVNS, what are our options...
(if there is PVNS, we must operate and remove the synovium, like the first time).

Basically, we are out of options, except total hip replacement. There are too many issues getting in the way of other treatments for the degeneration of my hip.

One good piece of news is that he told me with 100% surety that it is not a problem to do a hip replacement with the grafts (AKA gapey). Isn't that so interesting in light of the last two blog posts about the whole issue of reconstruction? (The issue is officially off the table, for better or for worse. No reconstruction of gapey. I am at peace with it.)

Again, though, he said that I am a bit too young to get a total hip replacement. They have a life of about 12 years or so, then it needs a modification surgery. There is a limit to how many times modification can be done. If it has been done twice already for someone starting early like me, the person wouldn't be able to walk at a relatively young age (for me, 70 or so?), as opposed to waiting until the person is older and doesn't need all those years of walking.

Although I know all this, and he knows the issues involved, he still said it may be our only road for possible improvement. Of course, the longer I wait on this decision, the older I get. :) In years down the road, the prosthetic hips will be that much more developed and better. As it is now, though, they have some amazing things they can do with artificial hips. It could be that by the time I may need a revision surgery, new materials may promise more longevity of the usage of the hip.

Here we are, stuck between that rock and that hard place.
Well, one step (so to speak), one decision at a time.
Next step is to schedule an MRI. (oh, and a CT scan for my bum wrist).

I pray that my decision process is led by Hashem, and that the right decision will be revealed to me. Kind of like how it worked out with gapey recently. Was that the "dry run" for seeing clearly about this very big decision? I trust that Hashem is leading me in the right direction. *Always*.

I just saw the Broadway musical "Chorus line" on TV last night (while I was sewing the boys' name labels into clothes). I love that show! I saw it on Broadway way back when. I was dazzled. Then, when I played in an orchestra in Disney World, I got to personally work with the song writer, Marvin Hamlisch. OK, enough bragging. Why am I adding this? Because it is fresh on my mind, and I will now say...

"Kiss today goodbye,
...And point me t'ward tomorrow."

(I just had a heart-to-heart with Shifra about some hard things on her mind, and after an hour, I sang these two lines to her, and she went off to bed with a tired smile on her face. She told me she is the luckiest girl in the world to have me for an ima. I thanked her for teaching me how to be a good ima. *I* am the lucky one here.)

Anyway, about the song- truth is that most of the song isn't at all about my feelings about life, or love. But, using only these two lines pretty much sums up how I'm feeling at this moment.

If you want to hear the whole song, in original form, here it is (pictures aren't modest). If you haven't seen Chorus Line, download it and *see it!* The Broadway show is so much better than the movie, though.


  1. You're welcome! (BTW, the comment on Dec. 4 was, indeed, from me -- sorry I somehow missed your reply until now.)

  2. A big question I would have is how long is the recovery time from a hip replacement? Hopefully we can talk about this over Shabbat lunch?

  3. Sarah: I feel like I missed something. You've referenced the reconstruction of gapey is off the table forever, but I don't know why? Is that something you've chosen not to share or did I miss it?

    I'm glad you had the train trip with your boys, even if it wasn't necessary. They may remember that extra time with you fondly. I hope they have a blast!
    Hugs, Jackie