Sandi Update 8/21/17

Having talked to her a couple of times today I was already aware that by noon she had learn that the planned port removal surgery was not happening today as she was not on their schedule. As we had discussed, that might have been a good thing as that would mean she would be on heavy antibiotics for another day to deal with the bacterial blood infection before they again opened her up to do something. It also had become clear that they had to do yet another multi unit blood and platelet transfusion.

When we got home from UTD tonight, less than an hour ago, Scott called her and then after a few minutes I was on the phone with her. Upon further review of the x-rays, it turns out she did break her right rib. It is apparently a hairline fracture and the rib did not displace so it should heal without any intervention. At this time, they do not see any breaks anywhere else.

The plan for tomorrow is for the port to come out. At this point, we do not know when. She has been told that she is probably getting more blood and platelets tomorrow and they will do that by way of fresh needle inserts through each hand. Obviously, when they do that, it pretty much is going to shut down her ability to crochet as it will hurt far too much. Of course, if they do this tomorrow after the port surgery, she will be so heavily pain medicated that she won't be able to crochet or do anything anyway.

"It is what it is" has been her mantra the last few days and that hasn't changed tonight. The fight goes on.

Sandi Update

I have talked to her very briefly and she feels very sick tonight. They did a five hour harvest procedure today where they attached some sort of pump machine to the new three line deal in her chest and cycled her blood through it.

This new three line deal is hurting her a lot and she has weeks more of this thing in her chest. Unfortunately, this new one was put right where the previous port she had a year ago that caused her so much pain was located. If you look closely, you can see some of the scar tissue where the old one was a year ago.


They attach this pump machine,  which she says looks a lot like some sort of dialysis machine, to these three lines and run the blood and saline fluid through it and her. Somehow this pulls out the stem cells. This also works totally different than what I had understood would be done here when the time came. This was how she spent her morning today from around six to almost noon when it was all said and done. Then they had her come back late this afternoon for another injection.

The plan is for them to do this again tomorrow and hopefully that will be enough stem cells. She would have another injection of some type tomorrow afternoon. If they don't have enough to work with at that point she would have to do this again on Thursday.Obviously she does not want that.


After that I am not sure what her schedule will be the next couple of days as she doesn't really know either. It keeps changing based on what her body is doing at a given point. Theoretically she is still on schedule to be admitted Monday morning for the three week quarantine period and receiving her modified stem cells.

Right now she does not care about all that. She just wants to avoid throwing up tonight.

Update

Well, we still don't have Medicaid or Social Security Disability for Sandi, "Lite Up Texas" has lost our application for reduced power and phone bills for the fifth time so we have to apply yet again, and we got over 10k in medical bills delivered here today. Both GREAT LAKES STUDENT LOANS and NELNET have failed to process her forbearance paperwork and continue to harass us multiple times a day with robo calls about payments and worthless form letters. This after SALLIE MAE turned us over to a collection agency earlier this month despite the fact we were supposedly on a forbearance deal and had not heard from them in  months. Not to mention our crummy money situation with rent due this week which we do not have. 

I have talked briefly to Sandi today and I don't know much. I don't think they actually started harvesting stem cells today. The procedure seems to have changed from what I had understood it to be for harvesting. I do know she had the PICC line deal implanted into her chest so now she has another port type deal in there with three lines into it. I also know she was hurting pretty good after this one was done and had a new pain pill prescription to help her.

So, I don't know much. What I do know isn't good. Damn right depressing and I am very fedup on so many levels. It didn't help that I have fallen twice this evening. Do not panic--nothing broke. Just bruised up a bit----again.

Tomorrow we do all this again.....

A Quick Update

Sandi is doing okay. She has been hurting all day, as expected, but there have not been any other issues. So far, so good.

Sandi is Home

Sandi is already home and things went much better than expected. The cardiac surgeon was unable to put the port on her right side due to the damage caused by the last one and what happened to her with the chemotherapy before. So, he inserted it on her left side, along the collar bone, and thinks it may cause less pain than the last one. We certainly hope so.

She is currently in considerable pain and has taken a pain pill that should alleviate that and help her sleep. It also is the final step before she sees the bone marrow transplant doctor next Monday as to what he can do for her. I wish we didn't have to wait another week as that will let her cancer grow still more, but she clearly needs the recovery time.

Needless to say, I am a wreck. So, I will play catchup later on e-mail and all. But, I did want to say thank you for all the messages, prayers, and support. It is much, much appreciated by all of us. Thanks as well to the unnamed donor who made a donation yesterday as things are also once again very bad from a money standpoint. Much, much appreciated.

I will keep you updated.....


Kevin

Tomorrow

Assuming everything goes right, by this time tomorrow Sandi should be back home. At least, we hope so. We have to be at the hospital at 5 am so we shall be up around 4 am to get ready. By 7 am they are supposed to start operating on her to clean out the port site and remove a lot of scar tissue and debris. Once that is done the cardiac surgeon who has operated on her twice in the preceding months including last time when she had at least two bouts of arterial fibrillation will put the new port in place.

The current plan is then for her to have several days housebound at home recovering and then we see the new cancer doctor down in Dallas next Monday. This is the guy who is going to evaluate her for the bone marrow transplant deal. Hopefully Sandi will be a candidate for that, despite the fact that her bone marrow was full of cancer the last time and all her other issues, and that it can be done in conjunction with chemotherapy. If it can't be done, we don't know what plan B will be or even if there is one.

But, the first step is to get the port back in her. Between shuttling Scott back and forth to his classes at UTD tomorrow, I will be at the hospital for the duration. The nurses have seen enough of me, including my crashing to the floor, that they know how I have to lie down and all and work with me on that. Despite their help, this sort of deal does a real number on me anyway. As long as this is going on with Sandi I can't pursue further my own ongoing and worsening medial situation that very well may be MS. Somebody has to be able to drive and I am it in these parts. No other way around it.

I'm going to be radio silent on the lists and groups and out of touch as I am not taking my laptop to the hospital and running the risk of falling and breaking it. Things are bad enough here without that happening. Both Karl and Scott are on Facebook so there may be an update there as I let them know how their Mon is doing once the surgery is over.

As soon as I am back home I will update folks as to how things are......

Sandi Update--- A Change In Plans

The upcoming schedule of events has changed in the last day. We now have a date for her port surgery. It is now scheduled for Monday at 7 am. That means we have to be at the hospital down the street at 5 am Monday morning. They hope to have her done by 8 am. If everything goes perfectly she will be back home by Monday evening.

This means the appoint with the bone marrow transplant doctor who will also handle her chemo therapy is now pushed back a week. Sandi will need the recovery time before they can start anything or do anything more to her.

In the meantime the nightly chills, shakes and sweats, and fevers continue unabated. But, at least, this is a step forward as the surgery for her port is now scheduled.

To, the waiting continues......

A Sandi Update

At this point there is not a lot of new news to report. The post surgery infection seems to have cleared up and her pain levels seem to be a bit lower. She still hurts and gets flashes of intense stabbing pain in her right ribcage from time to time. We are told that will slowly go away over time as she heals from the last surgery to get the pathology samples.

The bigger issue remains the fact she is having cold chills, sweats and low grade fevers each and every night. As i write this, she is sitting up in a chair with five blankets wrapped around her and still shaking. This didn't happen before expect occasionally with the chemo. Now it is a  nightly event  and apparently this is due to the cancer that is doing its thing. Further proof, as if we needed it, that this cancer is different and worse.

We still don't have a date for the port surgery. The doctor that will be doing it is also going to be out of town later this month so that is an added scheduling complication. most likely it won't happen until at least sometime the week of March 4.

We do now have an appointment to see the bone marrow transplant doctor who will also be handling Sandi's chemotherapy. We see him next Monday and that is for a three hour appointment. What all will be done at that initial appointment we do not know. At least the ball will start rolling with that appointment.

So, the waiting continues......

The Day After---Sandi's Port Surgery

Still in pain but not to the level Sandi was yesterday and last night. She is active today and looking forward to having a shower tonight. So far so good. Obviously when we pull the bandages off tonight we have to check for infection and that sort of thing, but at this point everything seems fine.

And so far the severe weather in North Texas has missed us both last night and at this hour. Hopefully that continues......

Update---Sandi's Port Surgery

We are finally home.

Unfortunately, things were not simple at all because Sandi had developed a huge amount of scar tissue around the port. Her body really went to town on it and encapsulated it quite well. Between that and the fact that moving it to get to the underside to clip two sutures holding it into the major artery to her heart was so difficult, it was a much longer procedure than expected.

The good news is they finally got it dug out of her and she is home. She is considerable pain and  resting very uncomfortably. At least it is out of her.

I have to lie down awhile before I try and make dinner. If I can after dinner and right now this is a huge IF as I have fallen hard twice since getting home I am going to sit up and work on e-mail. If I can't, you won't hear anything more from me until tomorrow.

We are home and thank you one and all.


Kevin

Surgery Day--Sandi's Port Surgery

Early this afternoon Sandi is scheduled to have her port surgery to remove the port from her upper right chest at her collarbone. The breast surgeon, who put the port in on the day before Thanksgiving, will finally take the thing out of her. While it did exactly as intended allowing the chemo to go straight into her heart and then out through her body, it has also caused Sandi a tremendous amount of pain on a nearly daily basis.

Assuming all goes well, once it is out Sandi will be one step closer towards her goal of having a normal life again and getting back to work and other things she still can't do now.

I will update later today when we are back as to how things went and how she is.


Kevin

Finally Home

It took three hours plus drive time both ways but Sandi again has clearance to have the port surgery as scheduled on Monday. Told again it should be a very simple easy procedure.

It better be.

Exhausted, hurting really bad and very fed up with people who think they can be on cell phones AND drive at the same time. They can't.

Unexpected Doctor Visit---Sandi's Port Surgery

Unexpectedly we will be going to the offices of the breast surgeon later today as suddenly they want her seen before she has the port removal on Monday. Despite having had the surgery scheduled for more than three weeks apparently they missed the fact that it was their policy that the patient be seen prior to the surgery.

Their phone call was quite the surprise this morning. Hopefully they are not expecting any kind of payment as we have absolutely nothing in the bank. this trip will use up what little gas we have in the car as well.

I hate living like this!

Hopefully any severe storms will hold off here until we get back late this afternoon. We had heavy rain and high winds yesterday as well as last night in multiple waves of storms. That is a possibility again today as we have an upper level low drifting in the area. There has been storm damage across the area along with power outages that continue today. So far we have been okay here and continue to knock on wood.


Kevin