Crafty Lady Sandi: Very sick with allergies

Crafty Lady Sandi: Very sick with allergies: Hi! Crafters! I am sorry I haven’t posted anything. Unfortunately, I have been extremely sick with allergies; the Texas wind has be...

Update on Flat Out Begging For Your Help

Back on Wednesday I begged for your help. Because of your help I have been able to buy some medications  and get food. I rescheduled my visit with the cardiologist as they insist on my paying my Medicare deductible up front at time of visit. That was not happening. Still working on trying to paying the phone and power bills as well as getting the rest of this month’s meds. So, things are not quite the absolute complete disaster they were on Wednesday.  

We still do need your help if at all possible.  Please donate--if you can--buy using the paypal widget to the left.

Thank you!

Sandi Update

Finally back home as they were running way behind. At this point, things seem relatively stabale so they have cut back her dosages on the steroids and a couple of other things. By doing this, it should help with her diabetes numbers so that just maybe--assuming insurance does not cause more issues--she can finally have the much needed PET Scan.

Extra blood was taken from her today so they can run some extra tests to look at various issues. The IVIG infusion went well once it goits started so that was also a good sign.

As it stands right now, we wait to hear on the PET Scan and her next appointment is a month from now on October 17 when she will have another full workup and IVIG infusion.

Sandi also got a real kick out of the fact that all of her hats she donated have again been taken and according to the nurses they were a huge hit.

Sandi and her Diabetes

Well, we are finally back home and the doctor has adjusted her insulin dosage levels as expected. What was not expected was the fact that we had to stay there this morning while they gave her two different insulin injections and monitored her numbers until such time they felt she was safe to leave. That took quite some time.

The doctor may or may not make some additional medications to her depending on the blood work from last Thursday that she asked for Texas Oncology to run that had not come back yet as of this morning. We hope that she won't have to add anything to Sandi's regimen, but kind of expect that she will get something else added.

Assuming no unpleasant surprises Sandi goes back to her endocrinologist the first Monday in August.

Back Home From The Cancer Doctor

It was a zoo out there, but we are finally back home. The 30 minute blood tests all came back with their usual numbers. Now we await news on the ones that take several days even if there isn't a holiday. Everything looks about the same as last time so they went ahead and gave her the last round of childhood immunizations for now. Assuming things work right, her next round of those shots will be at 24 months post stem cell transplant which works out to next May.

In the meantime, we can't do the PET SCAN she needs to asses her cancer situation as her blood sugar numbers are too high. The max for such a test is 200 though they really prefer 180. She is seeing numbers between 300 and 550 which are very bad numbers.

Which is why she has a new endocrinologist and now is on insulin shots. As expected, the shots have made her way worse on her blood sugar numbers than the oral medications, but we are told to wait and be patient as the right dosage has to be found for her so they can work her numbers down.

As it stands now, she is back in bed having been worn out by all this today. We go back down there Monday for the endocrinologist appointment. Then, barring anything else, three weeks from tomorrow she will have another multi hour IVIG infusion.

Update on Things

This has been a hard week for both Sandi and I both physically and mentally. The bills keep piling up, the calls about them keep coming, and we both feel pretty bad. Sandi's ongoing feet issue has been really bugging her and the warmer weather certainly is not helping her ongoing breathing problems. Next month marks a year since she went on oxygen equipment 24/7. What little hope we had that it would be temporary seems to have been nothing more than wishful thinking.

You have not seen much from me these last few days and what little you have seen has been accomplished by my lying stretched out on the floor on my stomach trying to type and click to do whatever. The ongoing back and leg deal has been insane this week. Tomorrow Sandi has a long day infusion deal and how I am going to make it through sitting in their institutional chairs I have no idea.

Despite how bad the week has been and more, one thing happened that is simply wonderful. The good folks of Tapir and Friends Animal Store for whom I do a little freelance writing for as I can have created a page  devoted to some of Sandi's creatures. Through the site they have offered them for sale with the monies made going to help Sandi pay for cancer treatment. They have Sandi's stuff in their warehouse and can ship quickly as well as market her items which takes a burden off of us that is increasingly difficult to accomplish.

Sandi's page is here and I hope you will check it out as well as the other things on the site.

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.

Doctor Day Friday

Today was rather interesting at the hospital as during our visit we and everyone else had to evacuate because the fire alarm triggered. Not sure why it happened. It took them about thirty minutes before they got it turned off, but we were back inside before that. I scared her people so much during all this that they put me in a wheelchair as they thought I was in trouble. Here they have clearly very sick cancer patients with full IV poles walking around in the driveway outside the hospital and the staff are making a fuss over me. Rather embarrassing to say the least.

Everything is pretty much the same on Sandi at this point. Her cumindin level is back too high so another pill adjustment is being made for that. Her white blood cell count is down and there is some concern about that so she received some sort of injection to try and stabilize things. Sandi's oxygen level remains the same so they continue to slowly cut back her steroids. As they taper back we all anxiously watch to see if her oxygen level stays stable.

So, everything pretty much remains the same at this point. Next doctor deal is Friday.

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!

Food Stamps, Etc.

After my hearing Social Security Disability hearing yesterday,  today we had our recertification interview by phone for our Food Stamps and Medicaid. We think we are still getting those for another 90 day period. Not really sure though nothing has changed on our end. However, we no longer qualify for TANF--Temporary Aide to Needy Families.

Apparently, under Texas law, since Sandi gave birth to Scott (instead of adopting him) and he is now 18 and out of High School because he graduated he no longer qualifies as a dependent child. He is now classified as an adult for their purposes even though he remains special needs, lives at home, and has no job or prospects for one at this time. If he had been adopted we could still have him qualify until age 21.

I don't begin to understand this one. The bottom line is the $275 we received at the first of the month that we used to pay the phone bill, drug stuff,  and tide us over grocery wise till the middle of the month is gone. We also have to somehow pay back the benefits we received for this month as we should not have gotten that. Supposedly they will work with us on that as they understand repayment can be difficult. They stress using a credit card to pay it quickly.

As if we had any credit anywhere.

On one other fun fact after four hours on the phone today. If I am declared disabled by the ALJ then I would be supposedly eligible for some other state aide programs. What those programs/benefits are and whether they would help me, the folks would not explain or discuss. For Texas Food Stamps and medicaid purposes, an official finding of disability would mean I would be classified as Sandi's dependent child.


Kevin

Unexpected Doctor Visit---Sandi's Port Surgery

Unexpectedly we will be going to the offices of the breast surgeon later today as suddenly they want her seen before she has the port removal on Monday. Despite having had the surgery scheduled for more than three weeks apparently they missed the fact that it was their policy that the patient be seen prior to the surgery.

Their phone call was quite the surprise this morning. Hopefully they are not expecting any kind of payment as we have absolutely nothing in the bank. this trip will use up what little gas we have in the car as well.

I hate living like this!

Hopefully any severe storms will hold off here until we get back late this afternoon. We had heavy rain and high winds yesterday as well as last night in multiple waves of storms. That is a possibility again today as we have an upper level low drifting in the area. There has been storm damage across the area along with power outages that continue today. So far we have been okay here and continue to knock on wood.


Kevin

A Sandi Update

I worked retail for more than twenty years and then I subbed for several years before being hired on staff in the local public school system (which in many aspects was just like working retail) so I get that some people are strange.  But, there are limits and the last month has not only made me question a lot of things but to seriously consider walking away from trying to do anything anymore.  Some of that is my worsening health and the strain of things here, but a large part is external.

I have never once written somebody and told the blogger he or she should not write about this or that. It never once crossed my mind to do such a thing. Yet, a number of people in the last month have felt the compulsion to drop me a note privately via e-mail to lecture and castigate me about writing about my Dad and his death,  and, among other things, Sandi and her cancer fight as “folks don’t want to read that” or “shame on you for exploiting your wife to beg for money” and other comments like that. My hands down personal favorite,  “You killed your dad, you are killing your wife, are you going to kill your fu**ed  up retarded ugly sons next?” These are not random folks that just stumbled across my blog. These are actual living breathing people from the various writing/reading lists I am on who have one face in public there and a far different face in private to me.

Really makes me wonder.

On the flip side of things in the last week Sand got two large boxes of yarn from folks who want her to use the yarn to make her chemo hats for donations to her fellow cancer patients.  She was absolutely thrilled to get the boxes of yarn and will do exactly as asked. 

Also appreciated very much were the few donations made by folks this month to hold things together a little bit longer for us. We appreciate it very much. As we do the several folks who e-mailed us over the weekend to ask about her and remind us both that they are praying for us amidst their own very significant troubles. 

For those who have asked in private or just flat out wondered the above is why I have not written much about her the last couple of weeks.  This latest round of chemo has worked her over pretty good. She has had the flu like symptoms nearly the entire time with only brief respites of a day here and there since she had chemo back early in the month. Beyond that, she has been incredibly cold nearly every day. Even on the days when we were nearly 80 here and I could sit outside in the sun while wearing shorts, Sandi was out on the porch in long sleeved outfits with her hat on and several heavy blankets. Several days, Karl and I took turns running blankets through the dryer to warm them up before putting them on her because she was shaking she was so cold.

Whether or not she has been so cold is a sign she is too anemic and will have to have a major blood transfusion tomorrow we don’t know. Round Five of chemo is scheduled tomorrow and Wednesday but I expect she will have to have a blood transfusion and the chemo will be pushed back a week to ten days.  Hopefully not. Hopefully the fact that everything was worse this time around is nothing more than what one expects as the rounds of chemo take a toll on her.

We will find out tomorrow morning…..

Kevin

I Am Begging For Your Help

I am begging for your help so that we don’t have to go to a homeless shelter in Downtown Dallas. I'm terrified of being homeless. It is something I have always feared. With my health, as well as Sandi's, I fear it even more.  

 

 

We are on food stamps and eating only because of that. We don't qualify for Medicaid. This is because we have over $200 in assets in furniture, clothes, etc. and that disqualifies us under Texas Medicaid rules. We “might” qualify once we were in a homeless shelter, but I really don’t want to find out if that is true. Sandi is still on unpaid medical leave and has not been terminated yet, so she still has her insurance as long as we pay the $120 bucks a month for her premium. The lack of Medicaid does not help my deal at all. A deal that is, without a doubt, getting worse.

 

 

Sandi is hoping to go back to work by the end of November, but that is up her bosses as, per their rules, she has to be 100 percent before she can go back to work. Mentally, she is still having some issues and these look to be permanent. The bigger issue is her knee. As it stands now, she will be doing physical therapy at the cost of 60 bucks a week for the foreseeable future. She is still on crutches and will be until she sees the doctor again right before Thanksgiving

 

 

So, that is where we stand at this point. That is also why I am asking for your help. I am not just asking----I am begging for your help. As you can see from the widget to your left, we are way short of what we need to stay here. We have nothing in the bank. Literally. What is in the Chip In widget is it.

Please know that I am asking for the bare minimum…not to get our car fixed or anything like that. This is just for the rent, keep the local phone service on so I have access to the internet, and pay for Sandi’s physical therapy, meds, etc. Most of the sixteen drugs she is on are generic and that helps, but between her drugs, my drugs, the many medications the boys are on because they both are special needs, it all adds up.

I know some folks hate Amazon and will not buy from them in favor of independent bookstores. I’m not asking you to change or do things differently. But, please, if, you are going to buy from Amazon anyway, please consider going through me as I get a referral fee of a few pennies on each purchase. It takes about three months after the end of the month for it to appear in my account and does not cost you a thing.

From a mental standpoint, Sand is still having various mental issues, but she is able to once again make some things again. This has been strongly encouraged by her doctors and me as it can help her recovery. She has been making things for years and it is nice to see her able to do things again as there were serious questions she would be able to do so. Sandi has some of her stuff at http://www.ioffer.com/users/sanditipple she has holiday as well as everyday items like quilts, baby blankets, stuffed animals, etc.

Last fall our son, Karl, set up a couple of deals for selling things under his online moniker of THUNDERCATSNYY. Karl is still doing this. One is at Amazon where he has had decent success moving video games, movies, my old books¸ and other items. His store on Amazon is at: www.amazon.com/shops/thundercatsnyy and changes almost daily because he adds things to replace stuff he has sold. He also set up a deal on iOffer to help move some of his Mom’s stuff and other items such as comic books he can’t sell/list at Amazon via www.thundercatsnyy.ioffer.com

 

 

By the way, my good friend and occasional reviewer here, Barry Ergang has quite a few neat books over at his deal located at http://barryergangbooksforsale.yolasite.com/ He sells a few and adds a few a couple of times a week so even if you looked before and did not find anything that strikes your fancy, surf over and take a look. He'll contribute 20% of the purchase price of the books to our fund, so please have a look at his lists.

Barry is also now up with some of his older published stuff available on Smashwords. You can search under his name or go directly to his stuff by clicking http://www.smashwords.com/profile/view/cassidy20

 

That is where we are. Please know that we are doing our best and are not just asking for help we don’t need. This is why I am asking for your help. I am not just asking----I am begging for your help. We truly do need your help desperately. Feel free to spread the word.

On behalf of Barry and my own family, I thank you.

Kevin