Taking out the Trash

My bad, my bad. I'm so far behind on posting that I'm going to have to do that little thing I call "taking out the trash." It may not be pretty (i.e. not the greatest writing) but hopefully I'll get semi-caught up in Debbie's story.

Ahhh..yes, the check mystery. Well, my sister Tina went to her bank and got copies of the backs of all the checks, and of the dozen or so she got, except for three that looked a little suspect, all the signatures looked to be Deb's. So to be honest, I don't know what the heck to think on that one. Debbie can get a little forgetful from her meds so personally, I'm chalking it up to that.

On the whup ass front, after stewing a bit on the couple of male behinds I'd like to kick, I'm happy to report a couple of guys have restored my faith in the male sex. I was talking to my husband and without my even asking, he told me Debbie could come live with us...I can't tell you how happy that made me. Tina and her husband Luis are getting a spare bedroom ready for Debbie so she can visit them in South Carolina any time she wants, and my brother said she could come and live with him on a moment's notice. As long as I'm running down the list of sibilings, my sister DeAnn opened her house to Debbie as well, so the girl has some options.

As I was trying to call Debbie to tell her all this, I found out Ray's parents were at the house telling Debbie and Ray they could move in with them.

As nice as it is to have a choice, all these options have their disadvantages. I'd love to have Debbie here and try to figure out how to make it work, but we don't have an extra room so while she would have her own space, it wouldn't have a great deal of privacy, plus she really doesn't want my kids to see her in pain or to see her going downhill. I think she'd probably be happier with my brother though there are logistics to work out on getting her to and from her appointments. I think for now she just wants to stay where she is. She realizes Ray has problems, but the good outweighs the bad most of the time and he is a godsend when he's not messed up. Tony realizes Debbie is sick, and at 94 he's not feeling all that great himself, but he cares about her as well and wants everyone to get along.

I did go see Debbie on Saturday, and while she looked pale she seemed to be doing better. She said she'd felt better the last three days than she had in a long while. Seems, thanks to the intervention of Arrington, the patient "navigator" at Piedmont, Debbie's two doctors are now talking and treating her together to manage her pain. They've upped  her pain patch to 75mg and she doesn't have to take as many "fill in" pain pills.  Plus, pigs have flown, and Dr. J. is being much nicer, so says my sister. She's still having some pretty severe side effects to the chemo, which worries me since she has another infusion tomorrow. 

This will be the fourth round of chemo, then they do scans again, then we get the news again from Dr. Jonas. It wasn't the best of news last go round so we're praying this time the chemo is slowing the growth of the tumors or can we dare to dream...shrink them? And please, God, don't let the cancer have spread any further. I so want the chemo to be over so her tired body can start to heal a bit. She asked if I could be there when she gets the results...it's our "thing" as she calls it.

Debbie told me once she's feeling better after this latest infusion (will that happen??? she's had non-stop side effects from the third round) she wants to come stay with me for a few days and talk over some things with me, which I took to mean long term plans. In the short term she has to once again, go deal with the Medicaid people and try to get that reinstated even though she feels like crap six ways from Sunday. Apparently, when you get disability they assume you make too much money to now qualify for Medicaid and expect you to pay for your medicals bills out of your disability payments. If anyone out there can tell me how you can live, pay your bills, pay for your medication and pay for hospital treatments for terminal cancer on $1100 month, will you give me a call....would love to hear how that's supposed to work.

Okay, Sheri, you've bitched and moaned and "taken out the trash." Now what are you going to do? (I'm going to Disney...seriously...I am).

I'll be talking to Debbie via cellphone but siblings will be checking in as well. Should have more to report soon.

Next post: The hardest thing

I'm ready to open a can of "Whup Ass"

I saw a t-shirt the other day that said, "If it's got tires or testicles, it's going to give you trouble." Well, there's a couple of pairs of testicles out there I'm about ready to kick...one I know for sure, and one I have a good guess on.

Last Monday, Debbie had her first infusion with the new chemo drugs prescribed by Dr. Jonas. To get ready for these new drugs Deb had to take B12, folic acid and steroids. The good news is the infusion only lasted an hour and a half instead of eight hours and Dr. Jonas said the side effects should be less with this new regimen. When he came to check on her, Debbie told him she was having a hard time getting her head in the right place after the news he gave her the week before. She felt like she should just go out, smoke a cigarette, have a stiff drink and chase it with a cup of sugar (something she's been avoiding because she tells me "cancer feeds on sugar.")

Well, Dr. Jonas, he of the defeatist attitude (I'm sure he'd call it being realistic) told her that if that made her happy for the time she has left, to go ahead and drink and eat candy bars.

Oh, bartender...one can of whup ass to go, please. God, that makes me so mad...Would a little compassion and optimism be too freakin' much to ask?

I had heard a commercial for Piedmont Hospital that said they had something called "patient navigators," folks that are basically advocates and help you through all this with advice, support, etc. So I called and the nicest woman, Arrington, told me she'd meet with Debbie.

So that happened on Monday as well. I know Debbie had a hard time with some of the aspects of the discussion, especially living wills, hospice, etc. Arrington is supposed to be talking with Debbie's doctors in the hopes that they'll talk to one another, and also working with Debbie to get a different oncologist so we can wave goodbye to Dr. Doom.

The second butt to get kicked, is not so clear cut. Because Debbie hasn't been able to work for a few years, and had not yet been approved for any sort of disability benefits, my three siblings and I agreed to each send her a check every month to help her get by. Deb and I were talking last week and she said my youngest sister had only sent her 3-4 checks in the last two years. While this was incredulous to me, Debbie said she never mentioned it before because it wasn't mandatory that anyone send her money. You'd have to know my youngest sister to know she would not NOT send Debbie money....the woman has a big heart. So, being the big mouth buttinski that I am, I told my sister about it and she said that not only had she been sending checks, but she had cancelled checks for the past two years. She felt awful that this entire time Debbie thought she didn't care enough to help her.

We don't know for certain who took the checks, but when we consider opportunity (who gets the mail) and motive (who needs money to buy drugs) and the fact that for whatever reason my sister had made her checks out to "cash" then something tells me it's someone pretty darn close to Debbie...pretty darn close. Tina wants to just move on now that we know about the situation, but Detective Debbie wants to analyze the handwriting and nail somebody's butt to the wall.

There's a lot more drama to report but it will have to wait until the next post.

Next post: Taking out the Trash

Tears for fears

That last post was getting ridiculously long so I'm going to finish up here. While Debbie and I were waiting in the lounge area for the nurse to give her the B12 shot she had another episode where the pain was so intense she doubled over and tears were streaming out of her eyes. I looked around the room and no one...I mean no one else was in distress, seemed to be in pain or was crying. I saw Dr. Jonas out of the corner of my eye and called to him so he could see what was happening to her and I got a "just a minute," as if I just wanted to ask him the time. Debbie just kept saying "shhh..shhhh...it's okay." Clearly it wasn't okay, but the nurse came for her before the doctor could walk around the partition. After the shot Debbie said she felt really "out of it" and wondered if he had seen her crying and assumed it was because of the news he delivered rather than the pain, and had slipped something in the shot to calm her.

There hasn't been a lot of cancer in my family...it has either come at a very advanced age or in my parent's case, they both died so young, they didn't get the chance to develop cancer. I've never had to deal with seeing someone you love in so much pain and feeling so helpless. I'm ashamed to say, but it's taken this sad turn of events for my sister and I to grow closer. As I've mentioned we were often at odds growing up, and for a good portion of her life, she drank too much and really wasn't that enjoyable to be around. But that's in the past and I'm finding she's really funny and smarter than she gives herself credit for. I'm determined to do whatever I can to help her in this fight..and she wants to fight...and we'll fight for as long and as hard as she wants and then when she gets tired, we'll rest. I can't exactly leave my husband and kids and move in with her, or forsake my job, but short of that I want to be there for her in any way I can.

I helped Debbie out of the office and volunteered to run over to the pharmacy and fill her pain medication while Ray went to get the car and she waited. I knew she couldn't afford the meds at the moment and she needed them immediately. But she wanted to walk over there with me so we headed to the next building while Ray took a copy of her oncology report over to Dr. Katz, who is treating Debbie's RSD. It took about 10 minutes for the prescription to get filled and Debbie wasn't in the system yet for Medicaid and didn't have her approval letter with her. It killed me to hear her in the back of the room whimpering. It was breaking my heart to know she was in that much pain. She said it felt like the same pain she had when she was admitted for pneumonia several weeks back. I gave her a Percocet as soon as I got the prescription and prayed it would go to work soon. She told me she took as many as 6 a day of those and they're the "fill-in" medication when her pain patch isn't doing the job. She saw the bill for the meds attached to the bag and apologized over and over for how much it cost. As if I gave a rat's ass...that's why God made credit cards.

Ray showed up and had brought the car around to the front of the building and he and the security guard helped her out. I was trying to hold on and not cry in front of her but I really didn't want to leave her. I asked her if she wanted to go to the ER and she said yes so Ray said he would take her. Ultimately they kept her for a while to monitor her blood pressure, which once again, was dangerously high and always a concern. Before they left, I found out they didn't have a cell phone with them, which scared the bejesus out of me. What if she became unconscious or they had an accident or the car broke down on the way back home? Well, at least this was something I could take care off... so I vowed to go research prepaid cellphones and get her one for emergency use. They left and I called my husband and cried.

Next post: I'm ready to open a can of "Whup Ass"

Celebrity sighting: "Farrah" meets a "Jonas"

Lord, I'm woefully behind on my blogging... has it really been three weeks? Well, some quick catching up is in order. I saw D. two weekends ago. When we got her wig she still had long hair, albeit, thinning out. Now she had only wisps and was wearing her head scarfs which she said she actually preferred from a comfort and maintenance standpoint. At the lake that weekend were also my brother, his son (there to set her up with a computer), my mom's brother and his wife and my mom's sister. R.'s son and his girlfriend were there from Macon and R.'s parents also stopped by right before I left.

I was worried all the company may have worn D. out but she took it all in stride and was happy to see everyone, thrilled with her new phone (with answering machine: a selfish gift on my part because I was so frustrated at not being able to let her know I'd called) and her mp3 player loaded with the theraputic music supplied by my sister-in-law as well as our new anthem "I believe the world should revolve around me" by Little Jackie. All in all, a good visit, although I never saw her eat a thing while I was there.

The dang lights went out while we were there and when they came back up, tried as I might, I couldn't get D. connected to the internet, so still no emails for or from her. Rumor has it my brother is headed back up there this weekend to get it all sorted out.

You know what? I'm sick of all these D.'s and R.'s ...I'm just going to start typing names....I'm not quite sure why I ever started it...perhaps a sense of protecting folk's privacy...but if you know my family and you're reading this, you know who I'm talking about..and if you don't, you probably don't care.

Debbie called me the following week to tell me she was having new PET scans on Friday. These would be reviewed and the following Tuesday her oncologist would let her know if the chemo was doing its job and shrinking or at least slowing down these bad boy tumors. She asked if there was anyway I could be with her at the doctor's office...Well, yeah....of course.
Mercifully I found a new way to get to Piedmont that didn't involve the hell that is I-75 so I actually arrived there before Debbie. When she got there she was dressed in springy colors and wearing her new, long, blonde, shaggy wig. Let's face it folks, it looks like a wig, but she looked cute in it...having said all that I could tell she wasn't feeling well.

She admitted she'd only slept about an hour an half and that she was having a great deal of pain in her chest when she took a breath. Ray was parking the car and she warned me that he was "messed up"...code word, he found some pills (xanax, whatever....) to take.

When Ray finally showed up he kept his sunglasses on so I couldn't see his eyes. We talked while Debbie was getting blood drawn, and having her weight and blood pressure taken, etc. Ray kept feigning taking "dirt" out of his eyes as an explanation for their redness. I told him it seemed Debbie was a little upset with him to which he responded she's always upset with him to which I asked why is that? "Because I'm breathing." Without stating the obvious (you can't take care of her when you're messed up on prescription drugs!) I told him we both knew why she was upset. 'nuff said.

Ray decided to go out to the lobby while Deb and I went in to get the news from Dr. Jonas. While we waited Debbie had even more discomfort and pain breathing and I convinced her to get on the table/bed and she was just situating herself on her stomach when Dr. Jonas walked in. Now if you've read previous posts, you know in the past, her oncologist has not gotten high marks in bedside manner. His first words to her upon meeting her were not, "Hello, I'm Dr. Jonas," but rather, "You have a 50/50 chance of living one year." To be honest, in this meeting he was probably the most engaged I've seen him, but to be equally honest it felt like he was just scanning the report as we were sitting there. He told us the results were mixed, but we left feeling like it was all fairly negative news. The first two chemo treatments didn't have much of an effect. The spots on the adrenal glands and liver had grown and there was, in fact, a new spot on the liver. The only good news, if you can call it that is that the growths on the lower right portion of one lung had diminished but the cancer was now in her neck as well. Debbie has RSD (the chronic pain disease in her neck) and I asked if the cancer was on the same side as the RSD injury. He didn't know and didn't seem all that interested in finding out.

He changed her drugs for the next infusion to something "better and more expensive" and gave her a prescription for folic acid and a shot of B12 both things she needs before taking the new drug. He also gave her a refill on her Percocet (painkiller) which by her face I could tell she really needed to take. As we were walking down the hall to the lobby Dr. Jonas said, "Come on Farrah," to which Debbie replied,"Don't call me that! She's not doing so well at the moment!"

Next post: Tears for fears