Endocrinologist

Endocrinologist felt that Sandi was doing "okay" today. The doctor was somewhat encouraged that Sandi was doing okay despite the increasing number of issues confronting her. She has a couple of tests she would like the cancer folks to run on Thursday when we are in over there, but other than that the doctor left everything alone.

Assuming nothing hideous happens and nothing major turns up on her tests, Sandi is supposed to see her next in the middle of November.

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..

Birthday--Plus 25

As Tropical Storm Andrea works her way northward across Florida this evening, Sandi is finishing up her 25th day since she had her stem cell transplant. She continues to do amazing well all things considered. She still has some pain in her neck in the area of the blood clot, but the swelling seems to have gone away. Hopefully this does mean the cumidin has gotten to a high enough level that the blood clot is finally dissolving.

Tomorrow afternoon she has approximately four different appointments in different labs and back and forth to the cancer doctor office to see how she is. Sandi is still wanting desperately to come back home. The original plan was for late June, but they gave her a little hope last week she might be home sooner. As much as I want her back home too, I want that damn blood clot gone first as I am very worried about her flying with it.

I don't expect any information from her until late tomorrow--possibly early evening--and will update when I know something.

Medical Updates

Yesterday was a bit much for me as both Scott and I had doctor visits. With that doctor office deal, a trip to one store for groceries and a trip to another for a new medication for me, and a couple of more errands, the day was way too much for me. So, I have not been online and have not updated this blog.

First and foremost, Sandi feels great. Considering how dangerous the procedure on Monday was and what we expected IF things went right, neither one of us expected her to do so well. We weren't the only ones as the doctors and staff there are absolutely amazed. She remains on some cardiac telemetry, but all the IVs remain pulled. Her appetite remains up and all the blood work so far looks amazingly good. One gets the feeling nobody can explain what happened or why, but everyone is just keeping fingers crossed that it keeps up.

Sandi's biggest complaint is that she is seriously bored. She feels significantly better than she did last week, or in recent memory, and is now feeling very trapped in the hospital. Sandi feels exceptionally fine and wants out and to get back home. She has told me over and over she feels like she did way back before the cancers and feels like she is completely well. It seems too much to hope for, but, we are hoping this continues.

As much as I have been mad at Wal-Mart for overriding the doctors here, the transplant center, their own insurance company, the doctors at Mayo, and numerous other medical folks who all insisted that Sandi needed to stay here for the transplant, this may have, in fact, been the best thing for her. So far things have worked out wonderfully once she was in the BMT Unit and the results to this point are amazing. I have not heard her sound this good in years.

In other medical news......

The results came back and everything is fine with Scott. We didn't expect anything otherwise, but this is still good news. He has finished the semester at UTD and is awaiting his grades. He is taking the summer off to recharge as the stress of everything here and school has clearly been way too much. The kid needs a break and is taking one while he can.

As to me--for the most part things are what they normally are. A couple of issues did turn up in the blood work which could indicate MS or some other neurological disorder. I'm being referred to a new neurologist for further evaluation and testing to look at what has happened to me and how I am gradually getting worse. At this point it is too early to say definitively that I have MS, but there are indications that it is a definite possibility.

I've never really believed the diagnosis of sciatica I was given three years ago this month. Not just because the two back injections I got failed to do anything (the second one made me worse), but the fact that I have issues with my arms and hands from time to time that do not fit the sciatica profile. Considering my injections came from the same company that has been in the news with all the issues, I do feel very fortunate to not have contracted another problem thanks to the injections.

Hopefully in a few weeks I will have some definitive answers and maybe even a treatment plan to alleviate some of my constant pain and symptoms. If it is some sort of neurological disorder I know that in all likelihood whatever it is can't be cured. More than anything, I would be very happy to be in less pain.  I can deal with the falling, tremors, weakness, etc, but the constant pain is what really gets to me.

Doctor Day in the Land of Tipple

This was one of those days when both Sandi and I had doctor deals going on. Makes for a long day--especially when my old enemy insomnia is back.

Sandi was first up this morning with her foot doctor. Her right angle continues to hurt her a lot and is showing no sign of getting better. While she is still to wear the ankle air cast while at work, he has put her in some sort of heavy strap on boot for the rest of the time. This is the same leg she had knee surgery on last October so I am rather concerned that the boot weight will do something to her knee and cause a new problem. This apparently is a possibility though one hopes not. The sad truth is her ankle is not getting any better so now she has to go into the heavy boot as much as possible so that the ankle has more stability. In two weeks he will see her again.

In my case this afternoon was the calcium screening test. I had been told last week that there would be some sort of injection. That was not done as there is no injection for this deal. The test consisted of me being moved back and forth on the table while the machine spun above me and I was told to breathe and not breathe. The hard part was being on the table with my hands above my head. Fortunately, after about ten minutes, I was done. Results will take a few days and they will call me when they have them.



Kevin

Sandi’s Thyroid---Here We Go Again

Back last Friday I was very happy to report that Sandi was declared by her cancer doctor to be in remission. I said then there were some issues that needed to be looked at and some more tests would need to be done. Over the course of this nightmare that started back last November, I have learned that when the doctors and hospital staff expedite things there is serious concern no matter how much they tell you not to worry.  The faster they move the more you need to worry.

We knew the cancer doctor had some concern about several things and one of the issues was/is Sandi’s thyroid. The last PET SCAN back in February showed three nodules on the right side and it was believed to be no cancer activity. The latest PET SCAN still showed those nodules and also showed some activity so he wanted her seen by an endocrinologist at the hospital.

 That was last Friday. By Monday at noon she already had doctor appointments and the first was with the endocrinologist. That happened yesterday morning with Sandi suddenly being the first patient of the day. By noon Sandi suddenly had another thyroid ultrasound scheduled for tomorrow morning. 

As we understand it from the endocrinologist, her right thyroid is definitely very active. The chemo did not kill it as expected and believed back in February. The endocrinologist believes the thyroid was the starting point for both of the two types of Non- Hodgkin’s Lymphomas she developed that did their damn level best to kill her. The fact that it has reactivated itself and seems to be building strength is not a good sign. His concern is that some patients during chemo can have those cancers killed and then have the thyroid develop a new totally different type of cancer that runs rampant very quickly because of the chemo and its aftereffects.

In short, she could be in remission from what they were treating for and rapidly become ill with a totally new and very different cancer.

So, tomorrow morning she will have an ultrasound of her thyroid. The plan, as we understand it and the information has been a bit conflicting from the hospital today, is that there will be a surgeon on standby to do a needle biopsy of her thyroid if necessary.  That biopsy will be done only if the doctor thinks it is a necessary risk based on what he sees on the ultrasound tomorrow morning.

Theoretically everything is okay and most patients don’t have this sort of nightmare scenario develop but everything that has happened with Sandi on this has not fit the expected pattern at all.

If that wasn’t enough tomorrow, Sandi will be seen by the skin cancer doctor tomorrow afternoon. Not only has a mole suddenly gone very strange looking but she has developed one for sure and maybe a couple more very strange spots on her face. In each case it is a dark circle, almost the size of what a black magic marker would make and black. They look like what you would get if you through a marker at somebody and it hit the person straight on in the side of the face. What they are we have no idea and neither did the cancer doc who thought that whatever they were they needed to be checked immediately.

Apparently another possible wonderful side effect of the chemo is that some patients develop melanomas because of the destruction of the immune system. While the chemo cured one of her cataract she had since birth it may have also set the stage for skin cancer. The theory here is that whatever these strange skin marks are they can’t be too extensive or extend any distance at all downwards into her skin tissue or the PET SCAN would have showed that and it didn’t.

At this point we have not heard from the staff of the cardiologist about scheduling another echo cardiogram to check and see how much, if any, damage the chemo did to her heart. With Sandi’s cardiac history we knew there was major risk to her heart to have any chemo done. But, as Sandi put it at the time, it wasn’t like she had any choice at all. It was chemo and hope ….or certain death.  So, you roll the dice and hope the stuff works and doesn’t kill you in the bargain.

One hopes it did not damage her heart. We are pretty sure it has made her diabetes worse and for now she is still able to control that to a certain point. What that will mean in the months to come we don’t know just yet. Sandi remains convinced that everything is fine and she will be back at work this summer.  As I write this she is out with Karl taking a short after dinner walk as she works to get her strength back up. She still tires very easily, her blood pressure still swings wildly at times, and the headaches come that worry me because of her history of strokes.

But, she believes all is fine and she is still here.  More than anything that is what matters.

Kevin