IVIG Completed

We have just gotten home as Sandi had a multi hour infusion this morning of IVIG. This is the stuff that supports her immune system and keeps it from collapsing. Sandi did fairly well though there were concerns over her high blood pressure when we first got there. That seemed to resolve on its own so they went ahead with the infusion.

She does not have to be back at Texas Oncology until the 15th of December. At that time they will do blood work and she will have a visit with the doctor. At that time they will also schedule another IVIG deal for the end of the year between Christmas and New Years Day.

Our Medical Update

It was a long morning at the hospital. We got behind at the radiation deal and that cascaded everything backwards. But, we are finally home.

Radiation  went okay once they got things working and going. Sandi has four more treatments and that will be it.

Sandi's blood work seemed to be okay. They are double checking a couple of things as they seem a little too good to be true. But, if the results are confirmed things look amazingly good blood wise.

Doctor was pleased about how she is doing.  The current plan is for her to come back in three weeks and do the usual visit. At that point and after consulting with the radiation doctor they will have an idea as to how we go forward. Indications right now are that an MRI will be done in very late August or early September so they can measure the tumor in her spinal area and see if it has shrunk like it was supposed to do. After that is done what we do next will be determined.

So, all we know for sure is once the radiation is done we should have a couple of weeks break from going down to the hospital and doing anything. That will be nice.

Update On Sandi

She is very anemic, but otherwise her blood work was good today. The biggest concern right now is she may have to have a multi unit transfusion of red blood cells. The hope is that by the time we get back in on Monday her numbers will have climbed and the transfusion won't be necessary.

Whether or not she can have chemo next Thursday and Friday as she should is very up in the air right now.

Sandi Update

Blood work was okay and her kidney function has improved slightly from earlier in the week. Her white blood cell count had suprisingly cliumbed so no shot.

Tuesday will be a very long day. Blood work, doc visit, then pre CT scan hydration, the scan, post CT scan hydration and then chemo.

Wednesday will be almost as long with the second part of the third round of chemo.

Supposed to be sunny and dry next week when this goes on so, if that remains true, it will help things a little bit.

Sandi Update--Finally Home

After a 2 hour drive home (double the normal time) thanks to the snow and traffic signals with issues, we are finally home. Sandi's bloodwork was okay though her blood pressure was high. Medication changes to address that and a couple of other things were made. She also got the usual shot to try to slow down the normal white blood cell freefall after chemo.

We go back Tuesday and Friday of next week to do it all again.

Tuesday we might be dealing with severe thunderstorms too.

No Chemo .....Yet

The plan has changed yet again. Sandi's leg is worse today so chemo is on hold. The new plan is for her to start getting IV steroids in an attempt to cause the leg to stop swelling. Revaluation of things tomorrow. Currently there is no timetable to start the chemo.

Pet Scan Results

Late last night they decide they needed a Pet Scan and insurance approved it as she is in the hospital. It took most of the morning to accomplish.

The scan confirmed the stomach lymph nodes as cancerous and interfering with the return blood flow from the leg. There is also a pocket like structure around the lymph nodes that may be also cancerous. They also see a spot in the middle of her chest in the wall of it that is small and most likely the same cancer. It is not in her lungs or in any way connected to anything with her lungs.

Other than that they don't see any sign of any cancer. The scan was from her face down to her knees and was clean everywhere else. This means that as near as they can tell the cancer has not spread at this point and is isolated in two locations.

She starts chemo tomorrow and he expects it to be a combo of chemo in the hospital as well as outpatient chemo every week when she is not in the hospital. The plan will be firmed up later this evening in consultation with Sandi's main cancer doctor. He remains optimistic that they can shove it back into remission, but clearly he is talking way more chemo than what she has gotten in the past.

So, at this point, I think the news is as good as we could have possibly gotten.

Back Home From The Hospital

We are back home and both of us are very wiped out.

The good news is that they saw a slight uptick on the thing that measures the impact of the IVIG. This means it might be starting to do something and therefore it is wise to keep going with the IVIG infusions. Considering we go on the hook, after insurance, for about 1500 bucks with each multi hour one it better start doing something.

The bad news is that the troubling trend on a couple of her blood work tests has resurfaced. If the same--or worse--happens again next week most likely she will be adding more tests and another speicalist to the treatment deal. One hopes not.

 I'm in tremendous pain and my leg has swelled massively so I have to stay flat on the floor for awhile. If I can sit up this evening, I will try and play catchup on e-mail then.

Thank you all for the thoughts, prayers, and best wishes expressed here and elsewhere. It means a lot to us and we are very grateful.

Not Friday

Today is not Friday and yet, due to scheduling issues, later this morning we are going down to Texas Oncology at Medical City Dallas for Sandi to have blood work and see the cancer doctor. Hopefully there won't be any bad  surprises in any of that. One just never knows.

Cancer Doc Friday--We Try Again

Assuming the disaster caused by switching Sandi to COBRA at $900 bucks a month to maintain her coverage has been fixed this week and her insurance coverage has been fully restored in all the computer systems, we have a very long day planned tomorrow at the hospital. She will have blood work and an evaluation by the cancer doctor. Assuming permission is granted, they then will move her to the infusion room for the multi-hour IVIG infusion.

Apparently my long standing idea to cut the top of the bag and have Sandi drink it straight is not an approved medical technique. It would save considerable time though.

Since moving her over to infusion and starting her anti nausea meds and saline drip through the port may not happen until around noon tomorrow it means that what normally gets started around 10 most likely will be starting at least two if not three hours later. One hopes it goes well and there are no complications.

Hopefully, if all goes well, by sunset we can go back to UTD and pick up Scott who will have been out since noon from his classes. Once we have picked him up we can finally come home.

Sandi and Wal-Mart

Sandi is done at Wal-Mart. They notified her via certified mail just now that they will NOT be extending her unpaid medical leave. Not surprised. Her leave ended March 20th and that will probably be her termination date. No idea yet how much COBRA will be.

Infusion Friday

Tomorrow is another infusion Friday down at Texas Oncology at Medical City Dallas for Sandi. On the agenda tomorrow are pre-meds and then one thing of IVIG. This stuff is supposed to help stabilize her slumping immune system and costs 6900 bucks a thing.

The new year is kicking our tail with the medical bills. Fortunately, most are working with us---for now--but all are making noises about needing bigger payments and faster ones. We would if we could.

Immune System Infusion Completed

Minutes ago we arrived back home and Sandi is already back to sleep as today has not been an easy one. After blood work this morning, they gave her the first dose of IVIG. This is supposed to stabilize her immune system and will be given monthly until the summer. At that point, a session will be skipped and her numbers checked. She tolerated the infusion fairly well and those in charge seemed happy about that.

What was not good news was the fact that her kidney function seems to have taken another major nose dive along with a troubling trend with her protein levels. Both are dropping and that does not help with her worsening swelling in her feet and lower legs. Water and protein shakes are advised for now though if this does not get better more tests will have to be planned to check various major organs.

One hopes that does not become necessary. In the meantime, we are to watch for any sort of allergic reason or anything out of the ordinary. 

Back Home

Back home and Sandi's kidney function has vastly improved which is a huge relief. Other blood work looked okay. Plan is for blood work next Friday with a doctor visit as well as the six hour plus IVIG infusion to hopefully stabalize her immune system.

Doctor Day Tomorrow

Sandi has blood work in the morning for sure. Depending on how her kidneys are doing, or not doing as the case may be, we could be there several hours while they do some IV stuff.  I am hoping not for her sake as well as my own as I have been feeling really bad the last couple of days.

Nothing that I can point to specifically, I just feel way worse than normal. It is absolutely exhausting to do much of anything and tomorrow is going to be one of those days. I hate being a grown up....life was not supposed to be this way.

Medical Stuff

Sandi reminded me as she headed off to bed early tonight a couple of hours ago that I had not done this in a few days. Pretty much everything is the same with her. The only news is the trainer came today to show us how to use her new INR monitoring machine. It works pretty much like the one does for her diabetes so training did not take long at all. Her first reading today on it was a 2.1 so that made the folks at the doctor office very happy.

The real benefit to this is it will allow her to monitor her cumidin level here at home without the hour trip each way down to Medical City Dallas Hospital. That is a huge help for her as well as me. It also allows for a quicker reaction for a medication adjustment as we can do it here at home as much as they want us to test each week. She goes in next Friday for bloodwork as well as an office vist and taht will allow us to double check the machine here as she will need to do a blood test here before we leave for the hospital.

As to me, I had a doctor appointment with a neurosurgeon a couple of days ago. He reviewed the MRI that was done of my lower back last month and discussed my issues. Long story very short--he believes there is nothing he can do to assist me. He will be referring me to two other doctors, possibly a third, as the hunt for help for me continues.

So, that is where we are at in this new year with our same old medical problems.

Back Home

We are back home and everything is pretty much the same. We do it all again in two weeks on that Friday. For now Sandi remains "medically fragile--relatively stable" and that is as good as it gets these days.

Doctor Day Tomorrow

It is a new year, but for us nothing has changed. Tomorrow is another morning and maybe more down at the hospital for Sandi to have blood work and a doctor visit. Everything as far as we can tell is the same so hopefully no surprises tomorrow.

Doctor Update

We are back home. Everything is pretty much the same so they are letting her skip coming down next week. Our next visit and blood work deal is on the morning of January 2, 2014.

I fell twice yesterday evening and once this morning spectacularly in the parking lot at the hospital so the rest of today I am staying flat on the floor and moving as little as possible. FFB for Friday has been setup for a couple of weeks now so you may not see anything new here until then.

Doctor Day Tomorrow

Blood work and the usual down at the Oncologist's office for Sandi. Going to be a long morning with, hopefully, no surprises.