Wednesday, June 29, 2016

Brain MRI

Wow, Robert and I are under tremendous pressure these days. We are leaving for a month-long trip to the states, and things are wild and wooly. Neither of us are keeping it together so well, but it's gonna be OK. It has to be, right? We've done harder things. But as my dear friend Ken said earlier today... life is messy.

One of the zillion things I had to worry about this week was doing the brain MRI, and that was this morning. What a thing.

Oh, but I didn't write about how my hip/leg MRI came out from last week... I have the results from that. All-n-all, seems like things are OK around my hip joints. The MRI noted the lymph edema present, which I already know about and try to deal with. Problem with that is that I have to wear the pressure garment more, but it gives my skin grafts and the skin around it a heat rash in the summer months. So that makes me not wear it for a few days until the heat rash gets better, then I have lymph edema swelling again, and round-and-round we go.

There was one other small finding, but I'm completely not worried about it. It's some sort of cyst near the surgical area of my recent right leg surgery (from October).

I'll go back to my orthopedic oncologist after our trip to the states and clarify anything more. I am pretty pleased with the results, though, thank Gd. *No PVNS*. That is what we were praying for, No imminent surgery. Baruch Hashem.

About today's brain MRI... whoa. A whole new experience in MRI'ing. Wayyy not something I ever would want to do again. Please Gd I won't have to. All of you out there who have to do brain MRI's on any regular basis...? So sorry dude. It really is the pits.

Picture lying down in a head rest which encompasses your head until your face, then having a cage device put on your face which clips into the head holder thing. You can smell the cage thing, it is that close. OK, picturing that? Now that you are all snug and can't move your head or shoulders, imagine putting yourself, lying down on a stretcher, into a long, white tube, which is small enough that your feel your outer arms being pushed ever-so-slightly on your sides. You look around and all you see is cage on your face and white tube surrounding you. Claustrophobic? Problem.

Now, with all that happening, the MRI noises start. This time, it's all around your head! (I am used to the multitude of MRI's I've had for my pelvic area, hips, etc. That noise was further away from me, and my head always got to be out of the machine.) Then the machine starts up...LOUD.... zzzing...zing....bang-bang-bang for many minutes, more zingzingzing for another few minutes, clip-clip-clip-clip for another unbearable amount of time, and repeat all those sounds, randomly, for like 15 minutes. Then, you get rolled out of the white tube on your stretcher, and get shot up with contrast dye. Then you get rolled back in and another 10 minutes or so of the chainsaw sounds and jackhammering at your head, but this time with a strange burning sensation in your body from the contrast dye.

Oh, and the bit about the contrast dye? Well, today I had no veins for the first time in my life. The doctor couldn't get an iv into me, and he poked at my arms with needles 5 or 6 times, on both arms, before he gave up. He announced my veins "too scarred". I showed him the vein the other guy used last week for my other MRI (it was still a tiny bit bruised), and he tried it, but the needle bent... too much scar tissue. I've had a lot of iv's recently, in the past few months, with all the visits to the hospital for the migraines. That's, of course, not to mention nine years of manymanymany iv's and blood draws and hospitalizations. I never thought I'd be the one with no veins, though. My friend, who is a cancer patient and on chemo for the second time in as many years, *she* has no veins. Chemo does that. Well, maybe the doctor today just didn't have the "knack" of getting an iv going. I look like a junkie now, though. So how did they get the contrast dye into me? It was lovely, let me tell you. They rolled me out of the white tube, head cage still buckled tight, pulled an arm out, and fiddled again with my veins. "Don't move"... yah, gotcha doc...
They somehow got the dye in (I couldn't see how because my head was locked down), and rolled me on my stretcher back into the tube for more amplified jackhammering and zinging. This time with the weird warming sensation whizzing around my body from the dye.

I used my powers of disassociation as much as possible. I was organizing our trip in my head, making mental lists of calls and errands, thinking about the beaches we'll go to, worrying about my mother, worrying about my father, organizing life. Mainly trying not to get freaked by my encroaching PTSD from the loud noises and feelings of helplessness. I hate loud noises.

One thing happened which I am just "letting go" of, because this is all out of my hands, you know? I'm sure it was just some technical glitch or something, but in all my experience of MRI's, this never happened....

I was in the tube, and the noises were happening for about five minutes, then machine just stopped. OK, that does happen a lot, they do their techie thing. But this was a really long time, inordinately long, that I was just lying there, head in the cage, with no pictures being taken. Then I hear the outer door, the technician's room door open. I hear more footsteps into that room. Door closes. I am in the tube thinking "seems like another person just came in". There is a little rear-view mirror thing attached to the head cage thing, where I could see an angle into the technician's place. I think it is there to help the claustrophobic people to see out of the tube. So indeed, I noticed there were three people there instead of just two. They were all looking at the computer screen. Was a new guy brought in to see something unusual? The worry takes root in my harnessed down little head. Honestly it felt like forever, but it was probably just 3 or 4 minutes, then dude number three walks out, and the MRI starts up again. What was *that* about?

At the end, I was happy not to hear what my little brain feared: "you have an aneurysm, you need immediate surgery". Read again- I did *not* hear that from the technicians. But my mind went there. Tricky little things, these minds we have, even when buckled down in a cage. *Especially* when buckled down in a cage.

At the end of the whole thing, I asked the technician if that big break was anything to worry about. They said that they are not allowed to say anything to the patient about the test. They are just the technicians, I need to wait for my evaluation to be ready in 7-10 days. I then said I am flying overseas in a few days, and I asked if there is anything I need to know about. Again, the mantra: you will get your results in 7-10 days. "Have a good trip". Okee Dokee, techie man, thanks! I'll go do that!

And now my friends, I am exhausted. I have so much more to document, but not enough time in the day. I honestly don't know if I will find any more time before we leave on Sunday morning. I stole this time from myself; it could have been my resting time. But I needed to write.

And with all this? Just the tip of the iceberg. It's been a crazy time period. I have let important people down because there is just too much on my mind and heart. I hope those people really forgive me.

My mom is not doing well, over the last few weeks there has been a drastic deterioration. She's not the same mom I left last summer. She isn't communicating much anymore. Sleeps a lot. Very sad for my kids that they haven't seen her in 2 and 1/2 years (at least that's true for the boys. Shifra and I were there last summer.)

What happens if I get a mega migraine in New York? Or any other destination? I pray. I wait it out. Maybe I go to the local ER if I just can't take the pain any more. It's out of my hands. I'll have the evaluation of my MRI from today in 7-10 days. I have access to it on-line.
The rest of it, it's out of my hands.

We did an awesome thing, though... we rented a house on a lake in Connecticut. Just for the 6 of us Kleins. You see, during the year, my older boys learn out of town in Yeshivas, we only are together Shabbats, and not even every Shabbat, at that. We have not spent quiet time together as a family in a long, long time. This house we are renting is right on a lake, and there are canoes and boats for us to freely use. It's called chill time for the Kleins. I am so looking forward to that, you can't imagine. I NEED it desperately. I want to coast on the gentle waves in a canoe, and just listen. Heaven. Quiet, clear, water. It is what is saving my sanity on this trip. I pray for that. I live for the water. I live for Torah, and I live for Hashem. And my family. Especially my family.

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ps- I had to totally go off the medicine that my neurologist gave me which was meant to be protection against the migraines. It gave me awful tremors in my hands, shortness of breath, weight gain, and other undesireable effects. I now have no medicine at all for the migraines. Hashem, please protect me and hold me in Your hands.

8 comments :

  1. Sending you extra prayers for a smooth ecit to the US and a brilliant vacation. Love you!

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  2. I can teach you how to fall asleep during brain MRIs. I do it consistently. Have fun chilling in the USA.

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    1. You were the one I was thinking of when I wrote that I felt sorry for the people who have to do that on a consistent basis. Fall asleep? Not in my loud head world.... not even with the pelvic MRI's. I just have to concentrate on disassociating, that's all I can manage.

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  3. wow, sare, you do have a lot on your mind! your Connecticut oasis sounds like a wonderful opportunity to reconnect as a family. We look forward to your visit here in NJ. Please call me when you arrive and text me your cell phone. XXXOOO hugs

    Dev from NJ

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    1. I'm looking forward, too, my dear friend! Can't believe we've been together since 7th grade, lab partners dissecting our fetal pig... poor little Phredda, gave her life to science. :)
      See you all soon!!!

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  4. I pray you have the best trip ever...you deserve it and more.Time with family and a change will bring you new energy.Be well

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  5. I pray you have the best trip ever...you deserve it and more.Time with family and a change will bring you new energy.Be well

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  6. Going for an MRI can be a scary and stressful thing, depending on why you need to have one done. It’s good to hear that the results from the one that you had done on your hip and leg came back good. The whole process of having to go through the MRI itself is also very claustrophobic and difficult.

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