Sandi Monday Evening

For the first time today since she was admitted, Sandi was able to take a shower this morning because her oxygen numbers were better. She is not back to normal, but the addition of whatever the new drug is that they put into the orange juice  and the antibiotics seems to be working. She managed to take a long shower, get dressed, and sit back in her chair with the sensor numbers still in the mid eighties range. This is a huge improvement.

They still believe it to be pneumonia. As part of all their testing they have tested her for West Nile fever and have cleared her on that. I was concerned this could possibly be at fault with her because we live on a creek here in the complex and there are certainly plenty of mosquitoes around. We take precautions, but still things can happen. The good news is that they have tested more than once for that and are sure it is not present.

Earlier today it was decided to arrange to have oxygen for her at home. Arrangements have been made and the plan is for it to be delivered to her hospital room. They will give her as well as me some sort of training course on this as there is a portable unit for when she has to have a doctor visit or something and some sort of home base unit that will stay here. The belief is that she will need this assistance for just a couple of weeks or so  and then everything can be returned to the equipment dealer. They hope to have it delivered to the hospital tomorrow morning and if so, as we understand it now, they would send her home late tomorrow.

This all assumes they can make their end of things happen and she does all right tonight. Fingers crossed and more as I know it....

Sunday at the Hospital

Just got home a few minutes ago as I and the boys spent the afternoon down at Medical City Dallas with

View Southeast From Her Room

Sandi. The cancer doctor came in and saw her before I got there  and told her the latest CT Scan came back looking like the one from Tuesday. No clots at all in her lungs. Fluid level appears to be about the same. He still believes it is some form of pneumonia and believes it is not getting any worse.

It also does not seem to be getting any better. He added another drug today that opens up the bronchial passages in some way. I don't know what it is or how it works, but they mix it in with orange juice. She drank it and about a half an hour later she had gained five precious points on the oxygen sensor readings. She is going to start this twice a day.

Sandi and Kevin Today

He also brought up the idea of sending her home on oxygen. Like us, he isn't sure how this would work either as they would have to send her home with something for the ride home. It takes about 40 minutes to an hour to get there from where we live and she could not make that ride home  as it stands now. So, his plan is to check into it this coming week and we go from there.

With Karl with us and available to take pictures with his cellphone, I talked her into having a picture done as  it has been quite a while since she would let anyone do one. She wasn't thrilled, but, when I pointed out lots of folks were worried and wanted to see her, she finally relented.  Of course, after getting the first one above, I wasn't about to let the momentum stop. Like a certain potato chip where you can't eat just one that led to the family picture below.

Scott, Karl (with beard) Sandi, and Kevin

My back and leg was hurting pretty bad by the time we made it to her room and the chairs there are just horrible. Since they want her sitting up as much as possible I took the opportunity to lie back in her bed for awhile and get my feet up.


Before we left today I made sure to leave our mark. I have been wanting to do this since Tuesday when they admitted her, but this was my first real opportunity. Usually there are just too many people around. But, the board is there as is the marker and I just could not help myself since the coast was clear for long stretches of time. As you can see, I had a very willing co-conspirator.




In case it is not obvious, I got Karl to take a closeup of just the board. I'm wondering how long it stays up. Make sure you ask for Jenny when you call the Tardis Exchange and remember roaming and long distance charges do apply. Cue the music.....

On behalf of all of us, thank you for your prayers, your support, your donations. We are hoping this soon shall pass and we can get her back home where she belongs. Thank you from all of us!

Sandi Still Hospitalized

Sandi is still in the hospital  and nothing much has changed at all one way or the other. The ecocardigram results are back. According to the cancer doctor, the good news is that it does not show any evidence at all of a blood clot or clots in or around her heart. But, it does show a small change in her heart since the one they did back in late January to see if she was strong enough from a cardiac standpoint to tolerate the stem cell transplant. We don't know what the change in her heart is as the doctor told her repeatedly it was small and "nothing to worry about." Needless to say, neither one of  us particularly reassured about that especially since we don't know what has changed.


About 1:30 or so they took her to radiology and did a CT Scan with contrast. This one today used dye and will be compared with the one without dye they did of her lungs back on Tuesday.  Hopefully it will show that her lungs are clearing though based on what is happening with the oxygen sensor stuff it appears they are not getting better. Those working with her remain convinced this is some type of pneumonia, but without a pathology sample they don't really know.


With a nurse and an aide with her they took her off the oxygen earlier today and had her walk the hall. The floor is shaped in a box pattern so there are four hall segments forming the box with the patient rooms on the outside of the box and the nurses station and other rooms on the inside. Sandi walked one short segment and when they got her to the end of it she was down to 86 on the rolling monitor. They aborted the excursion and returned to her room where she clocked in once seated at 72. Obviously this is not going to work for sending her home unless they send her home on oxygen. One of the nurses told her today that was a real possibility at this point. We don't know how seriously they are considering doing this.


Sandi wants me to pass on that her "CHRISTMAS IN JULY" sale currently underway that she mentioned on her blog earlier in the week will be extended if she needs to stay in the hospital even longer than already planned. For now she says to please feel free to go ahead and order and she will pack and ship once she gets back home. Her blog is at http://lady-sandra.blogspot.com/ or you can just go straight to http://www.sanditipple.ioffer.com/


Sandi wants me to also pass on her thanks for all the prayers, best wishes, thoughts of support that she has been getting all along and especially this last week. It means a lot to all of us and an incredible amount to her. Sandi is a strong believer in faith and positive thoughts and she is convinced this will just be temporary and in the long run a very minor hiccup on her road to recovery. She has every intention of not only beating the cancer, but conquering this latest setback. Even though she is still classified as terminal she is determined she is going to beat this once and fore all. She is an incredibly strong and determined woman and is not about to give up.


We still don't know where we stand with her social security disability case or the rest of it. Everything was supposed to be expedited, but because the first application early in the year was lost, we had to reapply for her and we have yet to receive any paperwork indicating anything. Getting through to a human being that can help, let alone have a clue what is going on, has proved insurmountable so we just don't know. If the cancer does not kill you, dealing with the bureaucracy and the paperwork will.


We just got notification today that we have to reapply for food stamps as our certification apparently ended this month.  The deadline to apply by to receive our food stamps on time next month has already past thanks to things coming late in the mail. Missing the deadline by over a week certainly isn't helpful. Right now we have nothing in the bank with ten days to go to the end of the month and rent being due. Not to mention other bills, many of them medical in nature for one amount or another, piling up on the kitchen table. 


So, I am begging you, if you can please make a donation via the handy dandy widget over to the left. I hate asking, more than you will ever know, but we are truly in a huge bind right now. It is amazing how much insurance does not cover in these deals and how easily they can find a loophole to duck through to not cover what should be covered. Any amount donated is a huge help and goes to pay for our share of her meds, doctor and other medical bills, her monthly insurance premium of $200, the land line phone bill, and what food stamps does not cover such as toilet paper and soap, among other things. None of the monies are wasted and we certainly are not partying with the money.  We certainly aren't faking this nightmare either as a couple of real (insert the profanity of your choice as I am trying to keep it clean) jerks have suggested in the past.

Anything at all helps. It is only because of you that we are still here to ask for your help one more time. We really do appreciate it more than you will ever know.

Sandi Today--More Hospital Time

Just got home a little while ago and it is pretty clear that while the doctors involved keep saying "a couple of days" she is not coming home anytime soon. The cancer doctor came in earlier today and spent some time with her. Sandi was getting blood out of her nose from time to time and the cancer doctor believes that is due to irritation of her sinuses. Despite running the oxygen through the water thing they do to moisten the air, some patients get dried out and start bleeding a little bit from time to time. It is rare and she has managed to do it.

He believes the antibiotics they put her on for the lung fluid are NOT working. He has changed her to another IV antibiotic and is adding an IV steroid to it to help her. he is also ordering some new tests. They did several chest x-rays this morning and spent over an hour doing an echocardigram in her room this afternoon.

From time to time when they take her vitals they have her go off the oxygen to see how far she will drop. Just sitting there doing nothing and saying nothing, she runs about 92 when on oxygen. For somebody who was well with no lung issues, they should run about 99 or 98. So she is already too low before they take her off the oxygen.

Once they take her off, in seconds the numbers start dropping and soon are flashing red as they slide below 85. It less than two minutes she is down to 78. As time continues to pass she fluctuates between 78 and 70. At one point, when she was at 72, they told her to pant hard and the highest she could get back to was 78. Clearly she can't come home with that going on.

I expect at this point she is in for the weekend at the very least and would not be surprised if this goes on into next week quite a bit.  More as I know it.....

UPDATE----

They have done two EKGs tonight. Apparently they were not too sure about the results of the first one so they came back with a different machine and did it again.  Theoretically, she passed as nobody freaked out and did anything about the tests.

Sandi Update

After falling twice yesterday evening and twice this morning it seemed the really smart thing to do was stay home today and out of trouble. Experience has taught me that when I am in as much pain as I have been the last two days I tend to fall more.  Hopefully I will be a little better in the morning and can eventually go back down to Medical City tomorrow to see Sandi.

They got the CT results back and while there is fluid in both lungs, there are no clots. This means she has not created a clot or had a clot get into a lung and then start accumulating fluid around it. Sandi says they decided not to take a chance on causing a new problem and have decided against trying to insert a needle into her lung by way of her ribcage so that they could get a fluid sample. They believe the two intravenous antibiotics are doing what needs to be done. Instead of taking the risk to classify whatever it is she is sick with, they are going to list it as an "unspecified respiratory illness." Most likely it is pneumonia, but without an actual sample they can't call it that.

The current plan is to try and wean her off the oxygen and see how she does. If she can breathe on her own they intended to send her back home as soon as they can. This rather concerns me as they have not checked her again off of oxygen and are getting 92 on the sensor when she is sitting up with the tubes in her nose. My understanding is she should be closer to 98 or 99 in those conditions. I would like them to see what happens, for example, when she goes off the oxygen to use the bathroom and see if she is still  in the 60s afterwards like yesterday.

So, overall, I am a little bit encouraged. No clots and they are now confident this does not signal a return of her cancer. Of course, they really don't know what it is in there or how we can avoid this happening again. Hopefully, the antibiotics are working and whatever it is is being destroyed.

This is where we are tonight and more to come as I know it...

Sandi and the Hospital

Sandi remains at Medical City Dallas and is not a happy patient. She has completed a CT scan of her lungs (not the full body one I thought she was getting) and has had a blood transfusion. They did a nasal swab yesterday and that has comeback as negative for MSRA and Staph. They are awaiting more test results that they hope to have tomorrow as they try to determine if it is truly pneumonia. In the meantime they are using two very powerful antibiotics on her in the hopes they will either stop whatever is happening or slow it down long enough they can get a handle on things.

They intend either tonight or tomorrow to get a sample one way or another of the actual lung fluid. Not only do they want to culture it, they want to examine it in some way. When I directly asked if the nightmare scenario that I thought of at 3am this morning was possible that the lung fluid was a sign that her original cancer was back, the only answer I got was "we are exploring all options and possibilities." To me that indicates that, just like it turned out to be in November 2011, the lung fluid could be a sign of cancer.

I also did not know before today that one had to have a white blood count above a certain threshold before one would show symptoms with pneumonia. The coughing, fever, etc that one thinks of with pneumonia all require a white blood cell count above a certain point before there are obvious symptoms. Sandi has a white blood cell count that while slightly higher than last week, is down significantly from two weeks ago and is below that threshold line that triggers an immune system response. Despite that fact, Sandi is coughing now a bit and coughing quite hard at times which seems to indicate additional fluid in the lungs.

She is on a high level of oxygen all the time and it is now being run through some sort of cylinder full of water to moisten the air before it goes into her. The only time she goes off of it is when she goes to the bathroom. On several occasions she has come out of the bathroom to find a nurse waiting for her with the oxygen sensor to check her once she gets back in the bed. Each time she was 69 or less. The worst I saw while there was a 62. Whether this means she is getting worse I do not know and those I asked were very noncommittal.

The bottom line is nothing positive is going on except MSRA and Staph have been ruled out. We await more test results. The original timetable had her getting out tomorrow which every nurse said flatly today would not be happening until her numbers off of oxygen would be above 90 and hold. I had figured that much out without being told. Clearly, when she drops to 69 or worse during the few minutes it takes her to get to the bathroom with her IV stand and back, there is no way she is coming home anytime soon.

So, she is down there and very unhappy. When I left her late today she had started coughing more and more from time to time. Since she has a deviated septum they would prefer she wear a mask for the oxygen. Since the mask is of a size that she would have to take her glasses off and lay there blind to the world, she is adamant that she won't wear the mask. So, she has the tubes up her nose, her crochet needles in her hands and is working away on her chemo hats.

More as I know it....


10 PM UPDATE----
Late this evening they tried to make her cough up some stuff so it could be analyzed. That did not work and instead caused issues for her including a rise in her blood pressure and a severe headache. They gave up that attempt and will re-asses in the morning. At this point, the only other option that I know of is they could try to stick a needle through her ribcage into the base of a lung to get a sample. That is not a good option considering the permanent scar tissue damage she already has in her lungs from everything back in November 2011. Even when on full oxygen and reclining in the bed, the best number they are getting tonight is 92. That is way too low for that situation from what we understand..

Sandi's Doctor Day--Update

This has been a long day and Sandi has had a serious setback. How major a setback this will be, we don't know yet. Sandi has been admitted to Medical City Dallas so they can run tests. The belief is she has pneumonia at an early stage. Her oxygen saturation level in the cancer doctor's office was 77 on one machine and 72 on another. They did an x-ray of her chest and there is what appears to be fluid in the base of both lungs. Lots of tests are planned to determine what is going on including a full body CT scan. She also will be getting a blood transfusion as well as additional antibiotics.


Of course, for us, this fluid in the lungs deal is very scary as this is how her cancer first presented in November 2011. That fluid in the lungs got so bad she was hospitalized, the right lung collapsed, and there were all sort of complications. That also led them to start looking for what was causing the fluid and that ultimately led them to discover and diagnose her two forms of non hodgkins lymphomas.


So, we have been down this road before and are not happy this has happened. Assuming it does turn out to be pneumonia they will have to determine what type it is and how best to treat it with everything else she is dealing with post stem cell transplant wise. While her blood work showed slight improvement, that has been far overshadowed by this new problem.


More as I know it.....