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

Mission Accomplished

Several of us were focused on accomplishing one thing done today...getting D. some hair.
She has been stressing over the prospect of her hair falling out and she really, really, REALLY did not want to be walking around completely bald.

D. was concerned because her hair was falling out at a much more rapid pace, and I was concerned because when I called the local American Cancer Society office I was told Tuesdays and Thursdays between 1:30 and 4:30 were the only time to get a free wig. I knew it would be at least two weeks before I had a Thursday off that coincided with D. feeling well enough, post chemo-infusion.

Well, we had a couple of white knights ride in on their horses in the form of my next door neighbor S. (henceforth know as the angel) and her friend P., who volunteers at the Cancer Society. P. graciously offered to take us over this morning around 11 a.m. and S. volunteered to drive. I had told the notoriously late D. and R. to be at my house by 10 a.m. to be sure we were on time.

I was sleeping on the couch due to bedfellow snoring issues, when I heard a knock on the door at 8 a.m. R. and D. had been up since around 4 so they just got ready and headed over. We killed a little time looking at wigs online and after several cups of coffee we headed out to Sugarloaf Parkway in the S.mobile.

The Cancer Society has beautiful offices in a beautiful building with beautiful people who really want to help. We were in a tiny room in the back, piled floor to ceiling with boxes of wigs, turbans and head wraps. There were a half dozen wigs on display and I could tell by D.'s face she wasn't too excited about any of those options, but then again, she wasn't about to look a gift horse in the mouth. D. had had long hair for so long it just wasn't in her genetic makeup to go for a funky little short wig and strangely enough, even wigs that seemed to be of medium length, looked too short when she tried them on.

I was really starting to worry we weren't going to find something that would appeal to her, when P. found one long blond number in a box and it was as if there was an audible "AHHHHHH!" in the room. As soon as she put in on D.s face broke into a big smile. I may have been curious to see what she would look like with shoulder length hair in her natural dark brown, but D. needed to have something long and blond, and the bottom line is if it makes her feel better about this process I'm all for it. She filled a small trashcan with her hair this morning after her shower, so knowing she has something that makes her feel a little more "normal" is a small relief.

D. plans on having R.'s mom shave her head completely and she wants to experiment with the fit and look of the wig, then hopefully in a couple of weeks when she's over the side effects of Monday's chemo treatment, we'll head to the mall and get her a backup wig. In the end, she'll lose one head of hair, but gain two. Small victories.

Next Post: Celebrity sighting: "Farrah" meets a "Jonas"

Everything I thought I knew that I didn't know

D. was here this weekend with R. It was only for Friday night, but I think they felt like they had a mini-vacation. No leaky roof like at home and no half-crazy 95 year-old sort of stepfather screaming at them. My daughter H. was away at a friends so D. and R. got her room with its super comfy bed all to themselves. They said it was the best night's sleep they'd had in a long time.

I learned a lot in 24 hours about what D. has to do to monitor her disease, and as time passes it will probably get more labor intensive in that regard. I also learned I had some things wrong.

It actually wasn't an infection from the biopsy of her adrenal glands that put her in the ICU about a week ago. She did have an infection at the site of her lung biopsy but she also had pneumonia and that was what was causing her difficulty and pain in breathing. The docs told her pneumonia is infamous for "hiding" behind tumors in the lung.

I also learned D. isn't ready emotionally to part with her super long hair. I can relate. I used my long hair as a security blanket of sorts for many years, but got over it in my late 20s. D's hair has already started to fall out a bit and since we weren't able to get an appointment to get a wig fitted this Friday I offered again to take her to get a haircut. I could tell this was painful for her to discuss. No way around it...it sucks that her hair is going to fall out; it's a matter of whether she wants long, long strands of hair to fall out or shoulder length pieces. But bottom line, it's her decision to make.

We're trying again to get her fitted for a wig this Friday or Saturday. Once we have the wig, D. just wants to have her head shaved. Turns out she doesn't want to deal with it falling out at all.

I learned that when D. doesn't feel like eating, the only thing she really wants is white cheddar Cheezits, and that she's mainly drinking Chocolate Boost to keep her caloric intake up. I've also learned WalMart is a good place to get both, if you don't mind your sick sister worrying about how much it's costing you.

D. has to keep a written record of how much medication she takes and when and it looks like a lot and often. She also has a cuff and blood pressure monitor which she uses several times a day. She lost the back somewhere along the way so the batteries have a tendency to fall out but she tells me her doctor said it's an older but very accurate model.

I've learned D. likes hi-test coffee, not decaf like me. She drank two cups Saturday morning and later when she took her blood pressure it was very high and R. felt like he needed to get her home immediately. They were packed and out the door in about 20 minutes. I don't know if the coffee contributed to the high blood pressure or if it was that she got upset talking about her "boys"; her two grown sons and R.'s son she considers one of her own.

My brother S. was headed to her house today to get her set up with a computer, internet access and an email account since she's a technology neophyte. He couldn't get an old computer he had to work correctly so he was going to buy her an inexpensive laptop. Better for her I think because she can use it from bed, but of course it was one more thing for her to worry about how much someone was spending.

The main thing I've learned is D. is going to worry, she's going to feel guilty and she's going to feel sad and the best thing any of us can to is to be there to support her. That last part, I already knew.

Next post: Mission Accomplished

I-75 is the seventh ring of Hell

I was born in this city, raised in this city and except for the decade or so I spent in the D.C./Baltimore area, I've lived in this city. But as hard as I try, I cannot drive in this city.
I don't know where anything is, how to get there or how one road relates to another, and quite frankly at my age I have no desire to learn. I say this as an illustration of how much I must love my sister, D., that this morning, in pouring down rain and rush hour traffic I drove from I-285S to I-20W to (arghhh!) I-75N to make my way to Piedmont Hospital to see her.
Just two nights earlier, unbeknownest to me, she spent 24 hours in the ICU. I just assumed they'd moved her from the ER to a regular room, but she'd only been out of intensive care since yesterday.
I arrived at room 227 with irises and lillies in hand (per the florist's suggestion I didn't bring anything overly fragrant in case the patient had "smell issues"), and I was expecting to see my sister pale and frail with tubes sticking out of her arms, nose and chest. I was pleasantly surprised to see she was up and moving, though understandably slower than usual. Her color was good and she gave me a big hug. About five minutes into the visit the nurse came in to give her more shots than I've had in my entire life, including one in her tummy.
The best news for me was that her sense of humor was intact and she seemed ready and eager to fight this beast.
What landed her in the ER, it seems, was not the cancer, not the RSDS but rather an infection from where she had the biopsy of her adrenal glands. The pain killers she was on weren't effective against the pain from the infection. Don't ask me where my sister (she of the GED) got her medical degree, but she decided at some point that if she took more blood pressure medication perhaps the pain killers would work better. This caused her blood pressure to drop to a dangerously low level and the doctor told her that when she was in the ER she was "circling the drain." I may not be the sharpest knife in the drawer when it comes to metaphors but I know that's not good.
Our visit wasn't long enough since I had reenter traffic purgatory and pick my kids up from school. She seemed happier than I'd seen her in a while, cute in her pink P.J.s and adamant about wanting to get a second opinion and to see if clinical trials were available at Emory. We made plans to get her fitted for a wig next week and then hugged goodbye.

Next post: Everything I thought I knew that I didn't know