Back Home

Back home and the news was pretty much the usual--some things went up a little and others went down a little. Because Sandi's blood sugars are way to high and she seems to be breathing okay, they have decided that it is time to try again to cut back her steroids a bit. I'm very worried about this as each time it has been done it has massively backfired and she has been forced to go back on steroids to an even higher dose.

Having played this cutback game four or five times now the idea of trying again very much worries me. At the same time, the steroids have massive consequences long term and the blood sugars deal is just one small part of that. We do know the early warning signs of worsening breathing issues from the pneumonitis so if  that starts happening again we will be talking to them asap.

Assuming everything remains stable her next appointment down at Texas Oncology will be in a month and will be for another blood work/ doc/ IVIG infusion.

Back Home---Sandi Update

We are back home and she is now sleeping. Everything seems relatively stable medication wise though they are going back to the original inhaler she was on that insurance denied. That one worked way better than their recommended choice. Her lungs seem about the same though it does seem like she is breathing harder here at home. By leaving her steroid dosage where it is and bringing back the original inhaler the hope is that she will breathe more comfortably. We are too keep a very close eye on the swelling in her lower legs and feet as it seems to be trying to come back.

The plan at this point is to have her see the cancer doctor in three weeks and then assuming everything is okay they will do another IVIG infusion the same day.

Had a very difficult discussion with the financial aid counselor as the amount we owe continues to escalate because of the new deductible this year. They need our monthly payment to go up by at least 35 percent and that is nearly impossible right now. Sandi having her unpaid medical leave terminated and her job along with it at Wal-Mart may or may not allow her to qualify for some things. New paperwork has been filled out and we await another phone call from the MASH program people. The expectation by all is that we don't qualify, but we don't know yet.

Embarrassing as heck not to be able to just take care of your own stuff.

Medical Updates

Just got home with Sandi as sleet mixes in with light rain here. We have metal stair roalinings and already the stuff is starting stick to the metal even though we are supposedly above freezing here. In the 70s yesterday and today we are in the low 30s with high winds.

We did blood work this morning on Sandi down at Texas Oncology and as happens every week, some things went up, other things went down, and so dosage leevls of several drugs were adjusted. The surgical site seems to be healing nicely.

On the negative side of things---Sandi's lungs are not improving at all so she is going back on the main oral steroid in addition to the inhaled steroids. She is now going to be back at the same dosage level of the oral medication as she was when first released from the hospital. Her lungs are not quite as bad as they were when she first came home a couple months back, but very close to it. Clearly, she has has had a major setback. The current plan is to keep her at this dosage level for 60 days and then see where she is at that point.

Needless to say, Sandi is very frustrated with all of this. 

We go back next Tuesday for an INR check and then a week later, again on Tuesday, for the full deal of blood work and doctor visit.  Assuming she does not get any worse in the next few days she should be home here for Thanksgiving.

In other news....yesterday I had a visit with my doctor. Some test results were a little flaky so that will be pursued. He is also lining up new imaging for me--most likely another set of MRI's looking at my spine and brain. He also will be setting up an appointment with a neurosurgeon for me. Since I am the only one that can drive here and things have to be coordinated with Sandi's stuff, this may turn out to be a bit difficult to pull off, but if something can be done to at least slow down what is happening to me that would be a good thing.

Yesterday took a lot out of me as has today so it most likely will be this weekend before I can start playing catchup on the e-mail again.

Sandi Update

We had blood work scheduled this morning as it was, but things went downhill a little bit over the weekend so they had to work her in for an office visit as well.The blood work was mainly for INR and that barely budged so that med has been boosted.

The surgical site is healing and they are very pleased as to how it looks. It continues to weep stuff, but what is coming out is normal. Everything happening with that is a good sign.

What is not a good sign is the fact that, starting late last week and going through the weekend, Sandi's breathing with and without the oxygen sharply worsened. By Sunday it was very clear that something had to be done so I contacted her doctor over Sandi's objections as she didn't want to be a bother and discussed what was going on.

About two weeks ago Sandi was taken the rest of the way off the steroids in order to give her body a rest as long term steroids can do nasty things and to allow her immune system to climb a bit. Steroids can and do suppresses the immune system and with cold/flu season on us with additional risk, it was deemed a good idea to cut her back and then remove the steroids. What is happening now is that the basic condition of pneumonitis is trying to flare up in a new way and creating an asthmatic like situation for Sandi.

Later today, if the prescription gets filled fast enough, she will be start using a steroid inhaler. The hope is that the steroids in the inhaler will help things in her lungs without causing the steroid side effects and risks that the normal steroid pills have.

While this is a definite and significant setback, she is nowhere near as sick as when she had to be hospitalized a couple of months ago when this started.  At this point, she gets to stay home and try the inhaler and see how that works. Hopefully it will work as fast as hoped and Sandi will start doing better again.

Blood work and an office visit remain scheduled for Friday.

Back Home

Just got Sandi safely home before I have to head out to get Scott at UTD.  Fortunately, while the blood work was a bit of a mixed bag today, Sandi does not need to have a blood transfusion. Her cumidin was sky high at 4.6 so medications are being adjusted. The tapering of the steroids is now stopped. She will remain at this level of steroids for months most likely while her lung function is monitored.

So, all in all, everything  is pretty much the same. We do it all again next Friday.

A Sandi Update

I wasn't in the best of shape yesterday afternoon or evening so I didn't update as to how Sandi is doing these days. Breathing remains about the same. The new, bigger tanks run slightly more than two hours at her flow rate so that is a little bit better for going back and forth down to the doctor at Medical City Hospital Dallas. With it taking about 45 minutes one way, the time adds up. Because I can't move them Scott is now going with us each time to move the tanks as we have to take spares with us. I am not sure how we shall make this work once Scott is back in classes at UTD at the end of the month, but the obvious solution is to start taking Karl with us. He won't be thrilled, but the choices we have on this, like nearly everything else, are very limited.


We went down yesterday morning as scheduled to go get her cumindin level checked. It was high at 5.1. That means it climbed from 2.7 to 5.1 in four days. They want her to range between 2 and 3. Thanks to the scare with the produce she has not been eating salads, broccoli or anything that could have caused this to happen. With it being so high she is off those pills through the weekend and they will reevaluate based on the blood test Monday. Sandi does the full blood workup then and also has a doctor appointment.


The picture below is from this morning. They have finished, at least for now, working on our porch to fix the leak and drainage problem. So, our stuff is moved back where it belongs. We discovered today that her air umbilical cord can reach from the machine plugged inside to the rocker out on the porch. So, we sat out there until the sun cleared the buildings and it got too hot.

As you can see if you look closely, much to her relief, her hair has started coming back. I have never cared one way or another, but to her this is a huge deal and I get that. She had about given up hope that it would come back this time. I suspect the powerful steroids she is on now have caused this to start, but I can't prove it.

Thanks to a couple of last minute donations we have just barely made our rent--even with the price increase due to the new lease. Moving was not an option and so we had to take the increase offered back a couple of months ago. I really didn't think we would make it this time, but we did.

And we thank you. The only reason we are still here is because of you that have chosen to help us. We are very grateful and appreciative.

Saturday Evening Update

Things are pretty much the same here. Sandi is making continuous heavy use of the oxygen concentrator and we see her numbers drop rapidly when she is off of it to go to the bathroom. The little $35 oxygen sensor I bought at the store was proven to be very accurate in the doctor's office so we have been checking her  a lot to see where she is at. She has a little more energy today, thanks to the powerful steroids she is now on, so she has been sitting with her computer in her lap and doing e-mail.

Sad to say she discovered she has had zero sales again this month despite her "Christmas In July" sale announced on her blog before she went into the hospital. Since she is virtually giving away stuff she thought she would get a couple of sales and instead got nada. Even the daily drive by looks she gets at her store at iOffer have dropped considerably. Maybe it is because everybody is doing some sale somewhere, I don't know. But, it is pretty discouraging.

We still don't know what her status is regarding social security disability and the rest of it. Supposedly, having a stem cell transplant is an automatic qualifier as well as the cancer she had and her hideous prognosis. No word yet.


I mentioned last week how we just got the paperwork to renew our food stamps. We filled that out this morning and mailed it today and again asked for Medicaid assistance along with the food stamps. Hopefully, something is in the system we don't know about and her approval is in the pipeline. Considering the food stamp renewal letter was dated July 3, 2013 and we just got it last week, it seems to me like there could have been a decision one way or the other and we just don't know it yet.

In the meantime, things continue to be very grim from a money standpoint. So, if you can, please make a donation via the handy dandy widget over to the left. Any amount helps. The monies raised go to the rent, utilities, food, gas for the car, parking at the hospital, medical bill payments (despite an installment plan both TEXAS RADIOLOGY and MEDICAL CITY DALLAS HOSPITAL --among others-- have turned some of the mountain of debt over to collection agencies--as if that changes our situation at all), Sandi's biweekly insurance premium of $95, her drugs, etc. The monies are not wasted and are very much appreciated.

I hate asking and I wouldn't if things were not desperate.  Feel free to share the news of our situation through social media or other venues if you would care to do so as we truly do need the help.

Kevin

Back Home

We are back home and the news is very much a mixed deal. On the good news front---they have ruled out TB, fungal infections, pneumonia and several other lung issues. While they don't have the lung pathology results back yet so cancer is not ruled out, what they do have on Sandi is good as it does not show anything.

As to the bad news---they now believe it is pneumonitis which is basically a serious irritation of the lungs. The bronchial sacs in the lungs get massively inflamed, loose elasticity, and you can't breathe. You can read about here at Mayo http://www.mayoclinic.com/health/pneumonitis/DS00962  and there are other sites to look at if you are interested. It is caused by chemotherapy, radiation, and in other ways. While Sandi did not have radiation, she has had chemotherapy and lots of it. The theory is that the heavy chemo she got at Mayo to set things up for her stem cell transplant is what caused this now.

Going forward, she is on some new drugs as of today and is in isolation lock down to protect her. Not that she has the strength to go anywhere anyway she is now forbidden in no uncertain terms from going anywhere except for the hospital to see the doctors. The blood count numbers look a little better than they did on Wednesday when they sent her home from the hospital, but they are nowhere near to where she needs to be. She is to stay on 5 liters of air per minute and stay away from everyone. On Monday around noon we go back for more blood work and a doctor's visit. They are hoping the new meds, which they started by injection and she will continue in pill form, along with everything else she is doing medicine wise will help her. Considering she is now up to 23 drugs per day, not counting the vitamin supplements she has to take, one hopes the pills are doing something right.

Long term is the big unknown right now. The current belief is that it will be months before her lungs will recover enough that they can begin to wean her off the oxygen. This assumes this even happens and this assumes that her ongoing diabetes does not prevent the lungs from healing. The damage could be permanent and if so she would be oxygen dependent the rest of her life. We just won't know for a very long time.

It is one very scary deal....