Doctor Stuff

The last several days have been rough and today won't help. Later today we will be going down to Medical City Dallas Hospital and basically wasting our time and money because insurance is being massive stupidly. Aetna and their third party agent Med Solutions have again this month refused to allow Sandi to have her needed PET Scan here.

This is the same PET Scan she was supposed to have late last August down at Mayo on Jacksonville, Florida. That was her 100 day point. It was approved to be done there as it is  part of their standard post stem cell evaluation and treatment plan. Unfortunately, thanks to the blood clot in her neck that they sent her home with as well as the pneumonitis that quickly presented itself here requiring Sandi to be hospitalized last summer, she can't fly. She remains totally dependent on oxygen delivered by machine and portable canisters. Her need for those canisters means she is not cleared by her doctors here or the TSA to fly.

So, since she can't go there, Aetna and Med Solutions won't let her have it here. Instead, they will make her go through a CT scan and await for those results before they will consider the much needed PET Scan. We have zero hope or faith in anything that comes out of the CT Scan as that test has never once shown anything cancer related. She has had several since November 2011 when she was hospitalized most of the month while the doctors tried to figure out what was wrong. While it was later determined, thanks to the PET Scan, that Sandi had cancer everywhere but her eyes, brain, and jawbone, the CT Scans showed nothing.

Not only is the CT Scan worthless, the PET Scan would be happening if she were at Mayo. The reality is that they are not denying the test. They are denying this location which is necessary because of the treatment decisions and complications they previously imposed upon her.

To say this is frustrating does not begin to cover it. It is a horrendous waste of time, money, and equipment in addition to needlessly doing something to her that does nothing to help her in her fragile medical state or assess anything. When the CT scan comes back negative, we all know that we still won't know a damn thing.

Back Home

Just got home. Sandi is a little anemic and a little dehydrated, but other than that all her blood work is the same. Instructions are to continue on as she has been doing and drink a lot more water. Neither is a critical issue at this point, but, they are a little worried. One hopes that if she gets hydrated back to normal that may help the anemia too. If not a transfusion will be in her immediate future.

No word yet on the PET Scan here as she can't fly to Mayo to do it as she is still very much oxygen dependent. Amazing just how heavy those cylinders are when pressurized.

Back down there next Friday.

Doctor Day--Completed

Finally back home and the overall news was good. Everything that is happening with Sandi is perfectly normal at this stage post stem cell transplant. Blood work looks good and they are very pleased.  Long term prognosis and treatment was not discussed as they were really focused on what we need to do the next couple of weeks. The long term stuff has to be coordinated with Mayo staff who uses a different treatment protocol than what her people here do for a stem cell transplant procedure.

The firm belief here is that she still has the blood clot in her neck though it probably shrunk just enough that the neck swelling went down. They believe strongly that, despite what she was told, Sandi was put on a plane and sent home with the clot in there. Needless to say, I am not pleased about that.This also backs up what Sandi has been saying all along regarding the fact that her neck still does not feel right and she has occasional pain in there. For now they are leaving it alone and will not ultrasound the area.

Basically, leave everything alone and just watch her is the mantra for anything and everything right now.

At this point Sandi moves to a once a week blood work deal. Her next time for blood work and a doctor visit is next Wednesday morning.  In between she is supposed to keep eating right, being careful not to overdo things, try to walk a little bit around the complex each day, get plenty of rest, take her 18 daily drugs, and to just be careful "not to rock the boat."

All in all, things seem to be on track in the right way and now we just have to wait and see...

Doctor Day Tomorrow

Sandi's first appointment since she returned from her stem cell transplant is early tomorrow afternoon. It has been awhile since we made our way down to the offices of the cancer doctor at Medical City Dallas for blood work and an office visit, but, that is the plan for tomorrow afternoon. With her car dead in the parking lot, hopefully nothing will go wrong with my car and we can safely get there and back. We also hope the blood work news is good and she won't need any transfusions or infusions.

She continues to tire easily and have the chills and hard shakes after every meal. But, she has started getting a little color back and does not look anywhere as pale as she did when she came home a week ago  Monday. She looks a lot better than she did.

One of the things the folks at Mayo really wanted her to do was walk a little bit each day. Not only does it do something to help strengthen her immune system, walking a little each day will hopefully start to strength her endurance. That should eventually help with future medical treatments assuming she can get back some strength and endurance. Weakness is a huge issue for her and probably plays a role in the post meal chills and shakes.

Today was the first day she felt strong enough to walk a little bit. With Scott at her side she went out for a little while this afternoon for a short walk within  the complex. They were gone a little over a half an hour and kept it close and slow. It wore her down quite a bit, but she said it felt good and that she was glad she had tried to walk.

Her appointment is in the early afternoon tomorrow so with travel time and all that, I have no idea what time late tomorrow afternoon or evening we will be back. I will update sometime late tomorrow when I can.

Sandi Tonight

Sandi is doing okay. She does tire very easily, but says she does not hurt all over like she used to before the transplant. She is incredibly pale and seems pretty weak to me. After every meal she gets body wracking chills just like she did before the transplant.

Quite honestly, she seems to me to be just as weak and sick now as before she left for the transplant and that worries me. A lot.

Her patience for stupidity is pretty low right now and it does not take much to annoy her. Like the stupidity of a certain local medical service company who ignored the reality of our situation and turned her over to a collection agency over a $33 bill we have been making installment payments on. As she pointed out while cussing them to me--if we didn't have the money to pay it it all off in one shot to the original creditor, why in the heck would they think we suddenly would if some worthless collection agency hassles us?

Makes one wonder....

On Track

for Sandi to come back home tomorrow. She says she feels fine and she sounds good on the phone. I think she is tired of me telling her to ask for help and to wear her mask. But, I worry and have to say stuff.  Especially since, overall, things have gone so well. She is coming home approximately two to three weeks earlier than planned because things have gone so well. I hope they are not rushing her out of town.

She flies out late tomorrow morning Florida time.

Sandi Saturday Night

Sandi is easing into her last Saturday evening at The Atria and feeling pretty good. Just about now she is probably playing bingo again and trying to do better than she did earlier today bingo wise. She talked to me a little while ago and said everything was good.

Along with some pictures of her new friends, she sent me some more pictures of her most recent home away from home. To the left is the front driveway and some of the rocking chairs. Sandi loves rocking chairs and has been spending a lot of time out there rocking away while she is crocheting.

A closer view of the front door area to the right and the water feature at the front below.

If everything goes right, in less than 48 hours she will be back in Texas. Our anniversary is the 15th so as far as I am concerned this is an early anniversary present. 28 years and counting.....


Kevin

 (picture taken this evening by Karl using his cellphone)

Sandi Tonight

Sandi had a long afternoon of doctor stuff, but, the news is really good. The main thing is the fact the blood clot is gone. She had an ultrasound to make sure and it is gone. She will need to be on the cumidin awhile longer, but, the clolt is dissolved and the danger has passed.

They did have to give some magnesium today because she was a little low so they put a bag into her. She was borderline needing it and since they are sending her home to Texas on Monday they felt they should go ahead and give her one for the flight.

Yes, you read that right! Sandi is coming home Monday on a direct flight from Jacksonville to Dallas Fort Worth Airport. If everything runs on time she should be here by late afternoon Monday.

She is coming home to quarantine here and will not be able to see anyone or go anywhere excect for the doctor's office at the hospital. Her first appointment with her cancer doctor at Medical City Dallas is for the afternoon of the 19th. They will do blood work on her, check a few other things, and then lay out how the followup care here is going to work. All we know at this point is that in about 70 days she will need to be back at Mayo for a week of tests and doctor visits.

She is finally coming home. I can hardly believe it.

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.

Sandi Wendesday Evening

As Tropical Storm Andrea churns in the Gulf heading on a path predicted to take it just north of Jacksonville, Florida, Sandi is doing okay. Her next doctor stuff is not until Friday afternoon so hopefully the worst of the storm will have passed on by the time she has to get out in it. Kind of hard to wear one of those paper surgical masks they want her wearing at all times when the rain is flying around you.

She seems to be doing okay. Everything feels the same at this point, according to her, and nothing new medically has cropped up. Apparently bingo is a serious business at The Atria and she has been playing a lot of bingo to pass the time. That is when she isn't crocheting or being asked to teach crocheting. I think they ought to put her on staff as a morale director because she is doing what she does best and pumping up all who meet her.

Sandi Tuesday Evening

The patient is not in the best of moods tonight.

 First, she did NOT get yarn yesterday at Target. I apparently totally misunderstood the situation.

Second, they did not do an ultrasound on her blood clot. Her cumidin level is 1.9 and since that was below 2 they did not do the test. Her other blood work continues to show improvement so that is good. They seem happy with where she is, but did not really do anything testing wise she thought would be done today or tell her that things are drawing to a close in Florida. She had the idea that would happen today.

So, the long and the short of it is they will see her Friday and put her through a number of appointments/ blood work to see how she is. She wants to come home NOW, but that is not happening yet.

Sandi Today

Just talked to her and she enjoyed her trip out to Target today. Said it was nice to go poke around like a normal person. Apparently she was able to get some yarn too so that made her happy.

More importantly she reports that her neck is better today. Less pain and less swelling in the area. Sandi says the neck is not as stiff as it has been in recent days either. Still not right, but better which might be a good sign. This was the first night in a week that she hasn't sounded very raspy. Hopefully the cumidin level is now high enough that the clot has begun dissolving.

She has five appointments tomorrow starting just after nine with various doctors and testing folks. Hopefully, by the late afternoon all the news will be in and it will be good.

Sandi Tonight

Nothing new to report as everything is pretty much the same with her. She does not see the doctors until Tuesday so she has signed up to go on the hospital shuttle to a local Target store tomorrow to get out a bit.

Her room is nice and all, but I think it is getting to her.

 

Despite the blood clot in her neck, they cleared her to go last Friday and she is looking forward to getting out somewhere normal for the first time in weeks. I think she wants to pick up a few things to make her stay a little bit easier as, for one thing,  she is out of yarn.



Sandi without yarn is not a pretty sight. I mean there is that whole green Hulk rage thing.......

Birthday--Plus 19

Sandi continues to do the same as her fourth evening in the extended stay facility winds down. She had another doctor appointment today with her cancer doctors who remain pleased with her progress. Her various blood counts continue to trend upward which is a good sign.

A not so good sign is the fact that her cumidin numbers remain very low. It had been my understanding they had given her a shot of this the other day and it was a one time occurrence. I was wrong. In addition to some sort of injection she has been giving herself twice a day of blood thinner, apparently she has been taking cumidin several times a day as well. Because her numbers are so low they have upped the dosage as well as the frequency of the dosage. Until she gets to somewhere between 2 and 3 as they measure it, they will not ultrasound her neck again and check the status of the blood clot.

I really wish they would as Sandi tells me her neck remains swollen, painful and stiff in the area. Her voice becomes very raspy if we talk for any length of time at all. That is caused by the blood clot pressing through the artery and up against her vocal cords. Then there is the fact that her energy level seems to be markedly down the last couple of days and she is very cranky. Of course, she is now expected to do far more for herself than she was while in the hospital and that no doubt is taking a toll on her. It may also be the constant toll of being poked and prodded as well as trying to placate a husband who isn't there and is now very worried because of the blood clot.

I do not know what is going on with her. All I know is that she sounds very weak and sick again and nothing like she has in recent weeks that gave me so much hope that maybe she was going to beat this damn thing. I am hoping that nothing bad is happening to her and the damn blood clot dissolves quickly.

All this just has to work.....

Sandi on Facebook

While amazingly quick to needlessly block my wife, Sandi Tipple, from Facebook today they now will take up to 24 hours to restore her access. Considering what she has been through recently all you can do is laugh at the Facebook stupidity. Health wise she is still doing okay and will see the cancer docs tomorrow for more blood work. I am hoping they will also check the blood clot and see how it is doing, but, I don't know that they will actually do that.

Birthday--Plus 17

This on and off stormy evening here in North Texas finds us dodging the worst of the weather--so far. Hopefully that will continue as things are hard enough in so many ways without weather damage compounding things. I'd whine about a few things, but I am pretty much sick of myself at this point and you folks don't need to hear it.

Sandi continues to do well and is spending her second night in the extended stay facility. Earlier today she had a doctor appointment where they pulled blood and checked her vitals. Unfortunately, they did not further evaluate the blood clot in the right side of her neck. They seem confident, according to Sandi, that it should dissolve in a matter of days and will not catastrophically break free and do damage. I hope they are right about that as I remain very worried.

They did run more blood work today and the numbers continue to trend upwards. This includes her white blood cell count which is rapidly approaching pre stem cell transplant levels. Normally, this does not happen like this at all. The folks involved remain exceptionally pleased at how well she is doing. Because she is doing so well they are giving her tomorrow off from medical stuff for teh first time since the week before she was admitted into the hospital there. Her next appointment is on Friday.

I've asked her not to party too hard tonight and tomorrow.....

Sandi Update

It took far longer than planned today, but Sandi is moved from the hospital over to "The Atria" for the next phase of things. This is where she will be for the next two to three weeks while they monitor her and make sure things are staying on track.

Things are on track, but there has been a definite wobble of the train. Apparently yesterday afternoon she started having a little soreness in the right side of her neck. The area was also slightly puffy. While she didn't tell me because she knew I would worry, she brought it to the attention of the nurses. By this morning it was clear it was a little worse in both regards. Before they pulled the three line deal out of her, they did a quick ultrasound of her neck

Sandi has a small blood clot in the main artery that runs up the right side of the neck between the heart and the brain. After they explained this happens to about 90 percent of patients who go through what she has gone through the last several weeks, they then told her that her particular clot is very small as compared to what they normally see. They believe it will soon dissolve. They gave her some cumidin today and sent her over to the extended stay facility with a box of shots that she is to administer to herself twice a day into her stomach.

Blood clots are bad news and while I am rather freaked out about this, she is taking the attitude that it is no bog deal and will go away quickly. Hopefully, it will. Her first appointment back at the hospital is tomorrow and she has a schedule for the next week where on most days she will go over for a doctor visit and/or blood work as they monitor things.

Birthday--Plus 15

Sandi continues to stun doctors and staff who say she is doing amazingly well. Every blood category they measure has shot way up and that includes her white blood count. Without question her modified stem cells have definitely grafted to her system and have started replicating things. Unless something goes absolutely horribly wrong overnight tonight they are going to cancel her third week in the hospital and move her to the extended stay facility sometime tomorrow afternoon. 

A couple of doctors not directly involved with her care have come by to pick up some more chemo hats for their patients. All the hats she had made are now gone though she still has the small lap blanket she made while in the hospital. I think she is going to take that as well as what little is left of her yarn over to the extended stay facility tomorrow. She will move over there unless her blood work tonight and/or tomorrow morning shows a sudden dip. Obviously,we hope not.

The current plan is for her to be in the extended stay facility at least two weeks and then move back to the hotel on her own where she would be for around two weeks while they did some outpatient monitoring everyday. They want to make sure she is strong enough to function on her own in that kid of setting before setting up they nurse who will fly home with her and turn her back over to me for care here. At least that was the plan a month ago when they said she would be in the hospital at least three weeks.

So, all we can do is wait, keep our fingers crossed for good things, and see what happens....

Sandi is Fourteen Days In .....

Today marks fourteen days for Sandi since she was admitted and they did the Stem Cell Transplant. Overall, things have gone way better than anyone expected or thought possible considering how sick she was when she left here. Despite feeling pretty sick at times, she has made over 20 chemo hats.

The hats seem to be a major rage there because a number of doctors, including ones not treating her, as well as other staff members have made the pilgrimage to her room to see them. Some of the doctors have taken a few to their patients to help them which is really cool and the rest have gone to the donation box in the infusion room on another floor of the hospital.

During her stay, from time to time, she has done a little teaching showing others how to make them. Hopefully, some of those folks will keep doing them after she leaves as the hats very popular. Unfortunately, there is quite the demand for them. 

She also made a small lap quilt too with some of the yarn she had left.

I hesitated to say this as I didn’t want to jinx things, but since she went and announced it on Facebook yesterday I guess it is safe to blab here. Sandi was originally supposed to be in the hospital for three weeks and then go to the extended care facility for at least two weeks. The third week of the hospital stay has now been canceled because her blood work is trending up so rapidly and she seems to be doing so well. At this point they plan on moving her over to the extended care facility that is located on the hospital grounds sometime Tuesday afternoon.

She will still be rather restricted in the extended stay facility but will have a little more freedom outside of her room--with extensive precautions---than she currently does in the hospital. Just another step on the road to coming back home where she belongs.

Birthday--Plus Twelve (The Good News Edition)

The good news of yesterday has now been confirmed and we now officially have a trend. The numbers of yesterday have gone up more. Several things they look at more than quadrupled in 24 hours. Not just that, but, Sandi actually now has a white blood count. This means that her modified stem cells have fully grafted with her body and her immune system is definitely starting up. How strong it will ultimately get we won't know for months as she will have to do the entire childhood immunization schedule at the normal intervals to support her immune system as well as take a number of precautions that most folks don't have to do to avoid a routine illness that could easily kill her.

But, we do now know that everything immune system related has activated and is producing all the various markers at different levels. The doctors involved at Mayo as well as the nurses working with Sandi are absolutely ecstatic. A number of them have been doing this for many, many years and Sandi says that they have never seen a patient doing what she is doing. They are simply amazed. Once again, she is not a normal case at all. This time not being a normal case is a very good thing.

It will be months before we know if this will succeed in holding this particular cancer at bay. But, we do know that things have triggered and a system reboot of her immune system is slowly powering up. All in all, this is the best possible news we could have gotten at this point.