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Sandi Update 6/26/17

Back home from spending time at the hospital with Sandi. The last several days she has been sleeping a lot and very confused and out of it when she was awake for very brief periods. Sunday was very scary as it seemed like something irreversible had happened and would be devastating for her. I deliberately did not say anything publicly as I feared the worst and wanted to know for sure before I said anything. Based on the doctor who is a bit more optimistic than he has been the last few days, I think I can safely say something now with the understanding things could easily change.

Tests have been run and more tests are planned for today.

At this point, they have ruled out a stroke and do not believe this is a cancer related issue or an infection. There is a possibility she had a seizure of some type late last week and she is on anti seizure meds as a proactive measure. The main working theory is that her kidneys and her high blood pressure are causing the mental confusion. I don't really understand how this works so I can only repeat what I was told. In some cancer patients, when the blood pressure is elevated and resisting control and the kidneys are not functioning as well as they should, this syndrome sets up in the patient. Takes about a week to ten days to run its course as they medicate for blood pressure and kidney function.

That is being done and she was somewhat more present this morning. She does know what year it is, where she is at, that sort of thing. But, right now she is very confused as to various family things and is extremely repetitive in her questions and statements. She gets agitated very easily and at times for apparently no reason. As bad and out of touch as she is, today was a slight improvement over the weekend.

A brain wave scan as well as an MRI are planned as soon as possible. If those tests back up what the doctor currently believes, she hopefully will be better by the end of the week.

MRI Results

This morning Sandi was scheduled to have blood work and a doctor visit. It was a total cluster you know what today. Staff shortages coupled with equipment on the fritz meant they were running over an hour behind. Then, because her blood pressure was significantly elevated they made us stay an extra 30 minutes after we were done to see if it would come down.

MRI shows the tumor has shrunk and is losing its definition which means the edges are dissolving. It also shows significant scar tissue in the area from the radiation as well as a very large area extending outside the radiation area that is swollen and inflamed. The belief is that the severe pain she is feeling is from that as well as the nerves in the area that are regenerating. If the pain remains severe they will have her on some sort of steroid regimen to help things.

While her red blood cell count remains stable, her white blood cell count has slipped significantly again so she starts IVIG infusions again on the 30th. It would have been next Wednesday, but they decided to back it up a week and not force her in. It is not surprising that they have to do this, but it is an indication that her blood work is no longer stable.

MRI

MRI is done and we just got home. She is in severe back pain as the table made things way worse for her. Cancer doc in the morning.

Tony Romo's MRI reveals broken bone in back, could miss 6-10 weeks for Cowboys (CBS SPORTS)

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Tony Romo's MRI reveals broken bone in back, could miss 6-10 weeks for Cowboys (CBS SPORTS)

Update

While there are power outages across the area and there is tornado damage to our north, we are fine. As the squall line hit here it had weakened a bit so all we got was a lot of rain and lightening with a little wind. Just a normal Texas thunderstorm and nothing more here. We are very glad about that.

I have not made it down the stairs to look at the car yet, but from looking down into the lot everything appears normal. That is a very good thing as we have a trip to the hospital today. Sandi has her IVIG deal and we should learn the MRI results.

I'm exhausted, but that is my normal state of being these days. Between the stress of  the situation here and my worsening health, things are very hard. But, it could be way worse this morning and I am well aware.

MRI Done

MRI completed and back home. Sandi is in tremendous pain in her back from being on the table too long as there were various issues caused solely by employee stupidity. I'm exhausted and hurting.

One Too Many Straws

I know there are folks way worse off, but I am so fed up. Hospital just called, and according to the voice mail from some pre registration clerk, we have to pay at least $175 Wednesday for them to allow Sandi to have the MRI. Money we don't have.

Medical News

After multiple issues with the company the cancer folks were referring Sandi to for the MRI it is now cancelled. They were appallingly rude and downright abusive over multiple phone calls. We now will be doing it via actual hospital staff and not some vendor renting a location at the hospital. Date to be determined.

I saw my cardiologist today who is pleased with my relatively stable status. I am to lose weight and relax as he is very concerned about the stress I am under. Well, no kidding.

MRI Scheduled

The MRI is now scheduled for very early Wednesday morning. It is a MRI of the pelvic and stomach area with and without contrast. So, we shall be there quite awhile.

She is very sick today so hopefully she will be better by Wednesday to do this.

MRI Planned

After further review it has been determined that Sandi has to have an MRI to check out a couple of the new spots that turned up on the Pet Scan. That should be scheduled in the next couple of days.

MRI--Completed

Yesterday wiped me out pretty good so Sandi told me to stay home while she would go by herself to do the MRI. It was supposed to be simple and fast as there was not any need for contrast or anything to be done to her. I just talked to her and, like the PET SCAN yesterday, this took way longer than expected. But, now the MRI is finally done.

The MRI results are supposed to be in Friday morning when we see that doctor.


Kevin

Medical Update-- The Lastest on Sandi's Feet/Legs

Sandi had another therapy appointment today with the physical therapist and the news was not good at all. The therapist has now stopped all therapy at this point because he believes it is doing absolutely zero good for her. Nothing at all has changed for the better. She remains in nearly constant pain except for the occasional periods of numbness that seem to be happening from time to time. She is still experiencing swelling at odd intervals that, so far, none of us have been able to relate to anything.

Going forward the therapist believes that both feet need to be fully booted as soon as possible, not just her right, and that she needs an MRI to determine the extent of the injuries and damage in both feet and both. He is going to stress all of this in his report for the foot doctor.

Sandi is supposed to see the foot doctor Friday morning.  She is also supposed to have her PET SCAN and blood work on Monday to determine if she is still in remission.

How long they have to wait after her PET SCAN to do an MRI I have no idea, but I would think there has to be some time because they use some sort of dye deal with the PET SCAN. Seems to me they would need that to flush out of her system before they could do an MRI.

Obviously, things could easily be worse and we know that. But, not knowing exactly what is wrong and if it can be fixed is frustrating her quite a bit. You would think after all we have gone through over me the last two plus years, and everything with her as well from heart attacks and strokes to cancer, she could catch a break on this.

More on Tom Piccirilli

Tom made it through the brain surgery okay, but based on what his wife Michelle wrote on Facebook yesterday, the road ahead is going to be much harder than they anticipated.  Beyond what I already mentioned on here, Brian Keene has additional ways you can help Tom and his family at http://www.briankeene.com/?p=12584

For those on Facebook, Tom's page is at http://www.facebook.com/tompiccirilli?ref=ts&fref=ts

Please help if you can.


Kevin