Thursday, July 16, 2009

The final chapter

My beautiful sister, Deborah Jeneane (Taylor) Sticher, passed away this morning at 6 a.m.

My thanks to all those family and friends who embraced us with their love and prayers through this difficult time. A special thanks to the staff at Atlanta Hospice who showered my sister with comfort and care during her final weeks, days and hours. Not only did they do an amazing job, but they came to genuinely love and care for her. May I suggest anyone looking for a worth cause to which to donate, consider this fine group.

I don't know that I'll ever be able to discuss these last few days with anyone but my sisters who were there with me in Debbie's last hours, and although I miss her terribly I have to be comforted by the fact there are no more tubes and pills and pain. She was sweet and stubborn and God better be prepared for some head buttin' when Debbie gets to town.

Sunday, July 12, 2009

Guilt trip to the pity party

I'm feeling awful that I can't be with Debbie today. Jackson is sick so he is sequestered on the couch with medicine, chicken soup, liquids and the remote control.
DeAnn is with her now. Ray never came back last night. His son said Ray fell asleep on the way home (he sounded out of it to me earlier...probably from the xanax) and his son was too sleepy to bring him back and Ray's parents couldn't. We'll see if he shows up today. Debbie's son, Dustin is also supposed to come visit.

Sonny stayed with her last night and DeAnn told me he was an absolute angel. He puts on a tough act, but he's such a big hearted guy. Debbie's getting weaker and she liked having Sonny there because when she needed to get back in bed he could lift her and put her in rather than the laborious and sometimes painful moving and tugging we girls have to do. I can so clearly see the image in my mind of my brother holding her.

Sonny has had to sort of distance himself from all of this thus far, for some very good reasons. But when you need that guy, he is there. We all decided we cannot count on Ray. Sonny is planning on either staying with Debbie and leaving from work from there every morning or finding someone who can stay with her. DeAnn and I will be going by every day after work and staying as late as we can. Tina is already making plans to come back here as soon as possible.

I stop by the chapel every time I enter and leave the hospice. I used to give thanks for another day with Debbie and to selfishly ask for one more day. Now I just ask that she be pain free.
All prayers appreciated.


Saturday, July 11, 2009

Where do I start and don't get me started

Note to self: reintroduce yourself to husband this evening.

Every evening after Glenn gets home, I head over to the hospice, or on the days he's off, I head over directly after work. DeAnn and I talked and realized we can only be there as much as we can (which in our case is every spare moment) but that between the two of us there is simply no way we can be there 24 hours a day, 7 days a week. Of course, that means our new garments are made of guilt, but what can we do?

Tina came up from South Carolina and spent Thursday night with Debbie. I joined her on Friday evening. I will cherish every moment we spent together. Deb's pump now has IV morphine in it. It gives her pain medication continuously and she can also push a button every 8 minutes for a "booster." When I say "she" can push it, I mean we. She's simply too weak. So we are in fact pushing it every 8 minutes and her pain fluctuates between a 7 and a 9 on a scale of 1-10. Which means it still sucks.

Tina and I got our pjs on and settled in for the night. The nurses came in and arranged her pillows and turned her on her side so she could sleep more comfortably. Debbie loved it. Mason, the cute male nurse called us the "yoohoo sisters" because Tina and I were yakking during the pillow arranging session and when he needed our attention he shouted out, "Yoohoo! Sisters!" Tina was exhausted from being up most of Thursday evening and although she made me take the more comfortable of the two recliners, she was able to get some rest Friday evening. I woke up every 60 minutes on cue and quietly got up to give Deb another shot from her pump to help with the pain as she slept.

We had turned in around 11:30 and Debbie woke up at 2:30 needing to go to the restroom. In spite of my previous post, we are still doing this which is a good thing since it gets her up and moving about. After, when she was washing her hands she quietly said to me, "I wish this would just come." Which I took to mean the end. DeAnn had me read this 20 plus page printout the doctor had left called "crossing the creek" which explains the death process and the various stages and what the body will do to make itself comfortable. It made a lot of sense to me and in a wacky way made me realize all this was a natural (albeit sad) progression.

I told Debbie she was in charge of that (when I read the printout it said terminal patients often hold on if they have "unfinished business"), to which Debbie replied she was in charge of nothing. "I'm not in charge of the cancer. I'm not in charge of the pain." I told her how sad I was this horrible disease had ravaged her body but that her mind and soul had not been touched.

She fell asleep again around 4 am and slept until 7. Tina slept another couple of hours and Debbie actually had a good morning (in this world of the new "normal") and had a little coffee as well as some grits. When DeAnn arrived Tina and I headed for High Falls, which is where Debbie lived until she came to DeAnn's, and then the hospital, and then the hospice, and then back to DeAnn's and now back to the hospice. Whew!

Debbie is the shutterbug in our family and she has a bar counter full of photographs at Tony's (the stepfather) at the lake at High Falls. Tina thought she could scan them all into a digital frame for Debbie so she could enjoy her photos at the hospice. Time was something of the essence as the sisters told me that the nurse practitioner at the hospice told them Debbie could pass away this weekend. I may be naive, but after the relatively good morning she had and the fact that she is still getting up and moving (though slowly and with pain) and still eating and drinking (though little) I just don't see that happening.

Tina ended up shooting the photos with her digital camera while I talked with Tony. He's 95, a little hard of hearing and still has a fairly heavy accent from his native San Salvador. I told him Debbie wasn't coming home and that she was going to die and that she was worried about him. She's worried the "vultures" as she calls them, will try to trick him out of his home and money. I told him not to give any money to Ray and that I would come by and check on him every other week, get him money orders for his bills and take him to the store. The main thing is I can tell he is very, very lonely without Debbie there and would appreciate the company.

It was nice having that time with Tina but it was incredibly painful to go in Debbie's room and see her still unmade bed from when Tina and DeAnn rescued her when she was home alone after being released from the hospital in Macon. It hurt to look at all the photos of Debbie, many when she was younger. She was beautiful and had long, long hair and such a beautiful smile. It hurts to know what this disease has taken from her. Those beautiful blue eyes are still there, though and they will pierce you to your soul.

My brother Sonny came to watch over Deb tonight. He was on a mission to find out her wishes for burial, etc and the sisters and I are praying he exercises some kindness and discretion. We think he will. I called later to see if he was doing okay and Ray and his son Joseph were there. I wanted to know if Ray was planning on showing up any time soon. Debbie doesn't like being alone and the reality is the rest of us have to work on Monday. I was taking to Ray and I know I was being cold and abrupt but when he started in on his problems I just felt as though I would vomit if I heard another word from his mouth so I hung up the phone.

He is an addict. He has addict behaviors. He lies, he steals and he tries to cover his tracks. He is a con artist and though his mother is a sweet woman, I think he cons her most of all. I no longer trust him and I don't think we can depend on him. I will be civil if that is what Debbie wants. If she asks him to be there I'm sure he will. No one can refuse those blue eyes. But my point and the reason I'm so pissed, is that she shouldn't have to ask.

Thursday, July 9, 2009

What do we do now?

Has it really been over a week since I last posted??

So much has happened...good and bad. We watched Debbie for several days and her blood pressure was good and she was responding well to the time release oral morphine. She was using the pain pump infrequently so we thought there was a chance she could go home. Much to our suprise the Doctor agreed, so the wheels were put in motion to make that happen. I spent Friday night with her and got her up and dressed. I held it together pretty well, mainly because we were all so frigging happy she was going "home", but when I saw her sitting in that stretcher to be moved to the ambulance, I just lost it.

Debbie looks like a baby bird right now. She's so frail and she has those little wisps of black hair coming in. She's sleeping a lot but when she opens those blue eyes and gives you a smile, or says something smartass, you feel as though you've won the lottery.

Once we got to DeAnn's they had to bring her in on a chair because the stairs were problematic, but the room was ready and we got her all situated. She fell asleep almost immediately and she just looked so relaxed and peaceful. She was happy to be home and later told Deann how happy she was to be there. In her bedroom is a photo of all five of the siblings going left to right from youngest (Tina) to oldest (me) with DeAnn, Sonny and Debbie in the middle. Debbie was always the prettiest and she had such long hair. She was quite proud of that hair. So sad to see it gone and her light fading.

I don't have the emotional strength at the moment to recount the last four days but it included very little sleep and my sister DeAnn was worn out. I got home from work yesterday around 7:45 pm and DeAnn called me around 8:30 to say Deb was having trouble breathing, was in a great deal of pain and had not taken her 4pm meds because she couldn't swallow them. Debbie wanted to go to the ER, which you can't do once you sign the hospice papers. I called the on-call nurse who agreed to come out and evaluate Debbie and I jumped in the car, breaking several speed limits to get there. Clearly the folks in front of me on Riverdale Road did not know I had a sick sister.

Bottom line is Debbie was transported back to the hospice last night. DeAnn and I were both in tears because we felt like we had let Deb down. We really thought, that between the two of us, with some major support from Ray and some occasional support from other family members and hospice volunteers that we could cover having someone with Debbie 24 hours a day. DeAnn found out rather quickly how totally consuming and exhausting it is, although she never once complained. For a mountain of reasons, I won't go into, DeAnn and I came to the realization we can't depend on Ray. So our dream of a peaceful sister, dying at home, was in shatters.

You need only to look at my baby bird to tell she can't swallow. Her throat actually has an deep inward indentation. The hospice doctor is putting all her meds in her IV line now so Debbie will be sedated most of the time. There won't be anymore watching "Case Case" at 1 am, or 3am bathroom trips, our laughter or silly comments. It will just be quiet waiting. Just waiting for what we know is coming but wish so very much wasn't. Simply not ready for this.

DeAnn just texted me to say Debbie was having a good dream and was smiling. That made me smile too.

Wednesday, July 1, 2009

Two steps forward, three steps back

After the memorial service for my cousin Steve, Tina headed over to the hospice to stay the night with Debbie and I headed home to see my kids and to sleep. I was hopeful Tina would have the same positive experience I had the night before, but unfortunately that was not the case.

Tina said Debbie was up and down all night and neither of them got much rest.
I don't understand the finer points of the tweeking that is going on to get Deb's pain meds at the right level, but I know there's a great deal of back and forth. For example, she was taking the MSContin 3 times a day and using the Dilaudid as her "breakthrough" pain med and that was working pretty well. Then Saturday, when Tina was there they switched the pain meds to 4 times a day and that's when things started to go south. The next modification was to go back to 3 times a day put up the dosage. So far so good on that.

Debbie is sleeping a great deal, but to be honest, I think she may be flat exhausted. When she has a good day, it's as though she has to squeeze every last drop out of it and she ends up wearing herself out. She asked Ray how she could make her lungs stronger and he told her to get up and walk around. As much as she'd like that, she simply doesn't have the energy.

Also, I know she's getting cabin fever, so I emailed Carla, the social worker and ask if she could have a preliminary discussion with the Dr. about when Debbie might be able to go home. Much to my surprise, she said anytime. I'm very happy to report the wheels are in motion and we're hoping to take her "home" to DeAnn's house on Saturday. Debbie's excited but also a little apprehensive because she won't have a cadre of nurses around 24/7 but she will have all of us who have been and will continue to be around all the time. And hopefully, she'll be more relaxed at DeAnn's and will get up and move around, perhaps even go out on the deck. Worse case scenario is she can come back to the hospice if she decides the home care arrangement isn't working.

I can't say enough nice things about the hospice folks. They're ordering a bed, bed tray, oxygen (also portable oxygen) and a wheelchair for Debbie. They have been so encouraging and caring. Knowing they are there as a safety net has really allowed us to keep going and to be there for Debbie. When I got to the hospice today Debbie was sleeping so peacefully. She was reclined in a comfortable position and breathing quietly. She wasn't sitting up fighting the sleep and talking to herself. What a nice change, and she needs the rest. I'm also relieved to know the hospice will be transporting Debbie to my sister's as they said her comfort is the most important thing.

And while I'm handing out warm fuzzies to all the nice folks at the hospice, I have to mention how kind Ms. Andrews at Monroe County DFACS has been in helping me to try and get Debbie's paperwork through on Medicare. Suffice to say, I have homework.

On a sad note, Debbie's next door neighbor at the hospice, B Jay Womack, passed away this evening around 9 p.m. B Jay was only 35 and had non-small cell lung cancer which is very aggressive. When he arrived two weeks ago he walked in on his own power (albeit slowly) but his decline was very swift. He had dozens of friends by to see him on his last day. B Jay was an incredibly nice guy and that's really all I knew about him. I've learned a great deal in the last three hours. For those that are interested, B Jay is the cover story on this week's Creative Loafing here in Atlanta (an alternative newspaper /tabloid). He was a fixture on the Atlanta Music Scene, going by the name Bobby Ubangi. I wish I'd had the time to get to know him better...that's a loss for me. But my focus was on my sister and that's a plus. Godspeed, B Jay.

Saturday, June 27, 2009

A Sister Sleepover

Friday was my first time to actually spend the night at the hospice with Debbie. We sent Ray home on Thursday night and already he's sounding rested and more chipper (via phone conversations).

When I got there around 5 p.m., Debbie's youngest son, Montana, was there as was Mark, my ex-sister-in-law's brother. He's great and actually lives not to far from the hospice. The room seemed totally different when I arrived.

Debbie had opened all the curtains and blinds and natural light was streaming in, plus I could tell she had been in "cleaning" mode....it's just what she does, so I knew right away she was feeling pretty well. She was sitting up holding court. We talked a little about Michael Jackson and Farrah Fawcett and then we found the Farrah / David Letterman interview on the internet and watched that. Montana also found photos on the internet of the VERY nice apartment complex where he'll be living next year when he goes to Georgia Southern.

They both left around six and then it was just me and my girl. Debbie told me she had "the talk" with both her boys (Dustin had been there the night before and most of that day) and we no longer had to walk on eggshells for fear of saying something we weren't supposed to. I ask how they were doing and she just floored me with her wisdom. She knew it was going to be hard on them, so she immediately asked them to go get her a Sprite, so that they would have an "out", to get out of the room and get their heads straight.

She and I had dinner and then she started feeling sick to her stomach. We thought perhaps it was the quiche from dinner but then she realized she wasn't getting any oxygen from her nose cannon and that was the culprit. When the nurse had come to add water to to the container the air runs through, she had not put it back on tight enough. Once that was fixed Deb immediately felt better.

We talked a bit. She told me in no uncertain terms that she wants all four of us sisters to go to see the movie "My sister's keeper" together. I asked if she was sure and she said she really wants to see it but she doesn't want us all looking at her all weepy eyed. We talked some more about logistical stuff, Medicaid, Social Security, Health Directives...stuff no one really wants to discuss.
Then "Farrah's Story" came on TV so we watched that together.

I got in my jammies and pulled out the "recliner bed" and settled in for the night. I made her promise to poke me if she needed to get up during the night. We fell asleep around 11:30 and she poked me awake at 2:30 so she could get up and go to the restroom. Then we stayed up and watched "Cold Case" for a couple of hours before sleeping again from 4-7 am. I actually woke up feeling pretty refreshed. I got her a cup of coffee (they have the coolest FREE starbucks machine in the break room) with french vanilla creamer, of course. DeAnn arrived around 8 with the fresh watermelon Debbie had asked for.

When I left Deb was happily munching on sweet watermelon and I headed home to shower and get ready for the memorial service for my cousin Steve. Made a brief detour to get Krispy Kremes for my boy, Jackson, (who texted me last night "I miss my mommy") and I'm just waiting on sister Tina who is stuck in traffic on 85S. All in all, a rockin' good night. Now we just have to get the girl "home."

Wednesday, June 24, 2009

Best Day EVER!

Today I spent most of the morning in tears while on the phone with Medicaid and Social Security.

I mean, everyone is as nice as they can be but it's so frustrating...there are so many hoops to go through and no one can tell you anything because of "privacy" issues. I finally told the Medicaid woman that I didn't know why I was even fighting this battle...the hospital can just figure out how to get paid. In truth, I was thinking we might need to transport Debbie by ambulance at some point, and Medicaid needs to be in place for that to happen.

I left to head over to the hospice around 10 a.m. DeAnn and Tina spent the night last night and the plan was DeAnn would stay there until Dustin (Deb's older son) showed up to stay the night and that Tina and I would head to the lake to have a visit with Tony ("stepfather") and to do a couple of errands down there.

When I was about 20 minutes away I got a call from Tina asking me when I thought I'd be there. She whispered, "I didn't tell you this, but Debbie has a surprise for you." I usually come in the front door because I like to stop by the chapel and I like to say hi to all the nurses on duty, but this time I ran into my niece and Ray's parents in the parking lot so we went the "back way"....through the garden so we could enter by the french doors off the patio. Also, I had some clothes for Deb's next door neighbor B.J., and I wanted to see if his door was open.

When I went inside the room, DeAnn and Debbie were sitting on the side of her bed, Deb had her head on DeAnn's shoulder and looked sleepy. Then all of a sudden, she jumped up and said, "want to see me do a little jig?" and she started dancing around. She said she wanted to impress me. Boy, did she ever. Our sister was back....right there in the room. Was she weaker, and tired, and had her hair fallen out? Yes, yes and yes, but she was the funny, bright Debbie I love. I was so happy I could barely contain myself.

We can only attribute it to the change in her medication. The Dilaudid was really knocking her out to the point she was basically non-functioning so they cut back on that dramatically, shifting it from her "main" pain medication to her secondary "break through" pain medication, while starting her on a form of morphine. Now my ex-sister-in-law is on small amounts of morphine for her chronic pain and she tells me it keeps her from sleeping, which may explain why Debbie never slept today...that little energizer bunny was going from 5:30 am and according to DeAnn's text message to me is still awake now (11:30 pm).

She tried to rest and would catnap for 10-15 minutes then those blue eyes would pop open and we would sit and talk about anything and everything. Ray slept practically the whole day (what was THAT about????) so Debbie and I got to just laugh and talk. Hope this doesn't fall into the "too much information" category but today I helped Deb to the rest room (mainly just to steady her...she has it under control but we don't want her to fall) plus there is the oxygen cord and the pain pump that she has to take with her to contend with. On the way to the rest room, I (for about the 10 millionth time) knocked her oxygen line and made it come apart at the connection. Of course I apologized profusely as I was trying to put it back together. Debbie starts coughing and gasping for breath and I yell, "are you okay?" and that little stinker bursts out laughing. "Got ya!"

We were sitting in the dark later while Ray was snoring away, and she started to (lovingly) make fun of Ray: "oh my angel, oh my baby" which is what he says to her all the time. And remember those 11 pills I said she had to painstakingly take the other morning? Tina said she popped a handful in her mouth this morning and washed them down with a slug of apple juice. Look up dumfounded in the dictionary and you'll see my picture! DeAnn (the joykill...kidding sweetheart) gently reminded us that Deb often has a "good day" when her meds are changed.
DeAnn is basically waiting for the other shoe to drop.

Well, I know that shoe is coming for for today, she had me at "want to see me do a jig." It gives me hope that if she can have a few more days in a row like this, we may actually get her out of there and to my sisters. In some ways I think it could work better and not be as tiring on DeAnn as she wouldn't have those long drives back and forth to the hospice.

I won't be back until Friday when I'm planning to spend the night (my first overnighter there) but I'll have to leave fairly early on Saturday morning to get ready for the memorial service. I'm sure I'll be getting loads of text messages tomorrow and I hope they'll tell me Deb had another good day. Fingers, toes and eyes are crossed.

Next post: A sister sleepover

Tuesday, June 23, 2009

Talking to god

There's a chapel at the hospice and I stop by every day on my way in and then again when I leave. I don't linger...mainly I stand at the doors looking out toward the fountain and thank god for having my sister another day. I ask him/her to wrap his/her arms around Debbie and to keep our family strong. There are plenty of other people asking for favors so I like to get to the point and show a little gratitude.

Last night I was at the vending machines getting a little peppermint york patty (70% fat free comfort food) when my sister Tina called on my cell. In addition to worrying about Debbie she was in a tizzy because her daughter's new puppy, who Tina had let out in the yard, had gone missing. Tina had walked from one end of her property to the other, up and down the road, across the road, over the river and through the woods, yelling that dog's name. She was beside herself and asked me if I'd go say a prayer that the dog came back.

Well, I've never been the religious sort. I go to the Unitarian Universalist Church when I go. You can believe whatever you want there....there's no creed, only some general principles for being a good person in the world. I've never felt like I had to have some explanation for why I'm here, what happens when I die, or exactly who god is and what I need to believe. In short, organized religion and I aren't intersecting on a venn diagram. It's enough for me to think there's something bigger than myself and that in this entire beautiful universe there may just be something larger at work and that quite possibly there's something for us after this journey.

But, back to Tina's dilemna. Since I had a chapel right around the corner I told  her I'd go in there and say a little prayer. Sort of hard just asking for something but I did it. "Please let that poor little puppy come back home so he'll be safe and Tina won't worry." Can I get an "amen?" Tina called me 15 minutes later to tell me she found the puppy. He had gotten trapped under the house and she heard his cries. Of course, she thought I had a direct line to upstairs or something. How I wish that was true...I'd be calling in the MF of favors if it were.

Tina and her husband Luis came to visit Debbie today. Luis headed back but Tina is staying for several days (we have a memorial service on Saturday for our cousin, Steve, but that's another sad story). She's spending the night with Deb tonight and I'll go pick her up in the morning and we'll head to the lake to check on Tony and Montana. Sadly, Luis lost his mother two months ago to cancer. She was a sweet, sweet woman. Luis comes from a rather large Colombian family and to say it was hard on them all to lose their matriarch is an understatement. Debbie dozed off and on while we were all there and I know for folks who haven't seen her since she lost her hair and got weaker (like Luis) it was probably a shock. Every once in a while, though, she'd open those beautiful blue eyes as wide as you please and want to talk. "Is anyone listening to me?" she asked once. Guess how high all us frogs jumped! I didn't hear this, but Tina told me that when Ray went to wake Debbie to take her meds, she asked why he woke her up...god had been talking to her and Ray interrupted the conversation.

When it was time for Luis to leave he went to Debbie's bedside to tell her goodbye. She took his hand and told him how sorry she was about his mother. The she told him his mother was waiting for her, and that his mom was happy. She had told me earlier in the day that she was tired of taking all those pills, that she knew she was dying and why delay the inevitable. In her own way, she's showing us how to get ready to let her go. It's like jumping off a cliff. We're going to all have to hold hands and just do it.

Next post: Best day EVER!

Monday, June 22, 2009

Just Damn

Ray talked to the doctor today. He was going to try and persuade her to switch Debbie to Oxycontin so she could be more alert, because her mind is SO still there. He was also going to push to get her back to Piedmont for a scan to see how far the cancer had progressed.

Not only did that not happen, but the doctor is switching Debbie to morphine, because her organs are beginning to shut down. So she'll be out of it even more, and sadly, our time with her is slipping away.

Next post: Talking to god

Sunday, June 21, 2009

It's all relative(s)

Funny how your idea of what is "good" and what is "normal" can change from day to day and from hour to hour when you're dealing with cancer.

Because of my schedule, I'm typically at the hospice later in the afternoon and evening when Debbie is pretty much down for the count. However, today I was there at 7a.m. and actually got to see the process - the painstaking process - of waking her up, getting her to sit and talk and to take the myriad of oral medications prescribed for her. I can barely swallow those horse pill sized vitamins you buy and heaven forbid if I take it on an empty stomach...I'll feel ill immediately.

Imagine being in pain (10 on a scale of 1-10), your body won't do what your mind is telling it to, and you have to swallow eleven pills first thing in the morning. You're already nauseous, you haven't eaten any food in days and you have to get down pills for blood pressure, anxiety and nausea in addition to a host of other medications.

It's killing me because I feel our girl is slipping away, but in those 45 minutes to an hour or so, when she's not sitting there with her eyes closed and in a fog, she is 1000% lucid, has her sense of humor and can tell you exactly what she wants. For the life of us we can't figure out how she could have been running around that place with her grandkids  two weeks ago and now she can barely stand. Is the cancer really spreading that fast, or in an attempt to find "comfort" is she being overmedicated? I know she hates being in a fog but sometimes the pain is just too great.

On another front, I've had a big change of heart concerning Ray. I've always deeply appreciated all he's done for my sister, despite his inconsistencies. But I've seen his actions over the past week and there is no doubt in my mind he is totally devoted to her. He has been at the hospice non-stop for 5 days and we finally convinced him to let his parents take him home for the weekend so he could catch up on his rest. In his mind my sister needs someone there 24/7 and that person was him. We had a schedule set up where between myself, my sister, my brother and Debbie's oldest son, someone would be with her from Friday evening through Sunday evening; enough time for Ray to recharge his batteries.

Friday morning, Ray spoke with the doctor at the hospice. Now Ray has been a fireman for 20 years and has been dealing with my sister and her medications for the past 8 so he has a good basic knowledge of things medical. He calls himself a "ditch doctor."

The doctor decided to changed Debbie's medications around, the hope being the new ones would help her to be more alert. Coincidentally, the hospice was changing their computer system and there was a lot of confusion. All things considered the doctor (who seems to trust Ray a great deal) said it would be best for Ray to stay with Debbie over the weekend. Couple that with the fact that she pleaded with him not to leave her, and there was no way he was going home to rest. We kept our schedule intact for the weekend so that someone was always with Ray so at least he had more opportunities for rest, even though he wasn't leaving.

My sister, DeAnn, brought Ray a little light weekend reading: the Physician's Desk Reference.
Ray was looking up Debbie's meds and cross checking them against one another for side effects and he was not happy with some of the results he found. He's got many, many questions for the doctor tomorrow. We talked and both agreed it would be best to be very tactful.

Our goal is still to get our sweet girl to my sister's, despite one of the nurses telling us the hospice might be "home." Debbie keeps asking if she is going to die there...and she emphatically does not want to. She's pretty fragile, medically, at this point so we're praying and hoping we can get her strong enough to get to DeAnn's so when she's ready to give up this fight she can go peacefully at home.

Next post: Just damn

Saturday, June 13, 2009

I Hate Roller Coasters

Ask my family. I was a big chicken and didn't ride the Rock 'n' Roller Coaster at Disney when we were there two weeks ago. And lucky for me, Space Mountain was closed for renovations. But apparently I have no say so on whether I want to ride the roller coaster I'm on at the moment.

I told Debbie when we took her to hospice that we might be in for some bumps in the road as they tried to get her medications stabilized. I think I forget to tell myself. The first two days it was as though I had my sister back. She seemed great when I saw her and she got to visit with her grandkids and was excited that she was going to teach a crocheting class at the hospice. She was eating...real food!

But the last three days have been a hell of pain, nausea, and a mental fog that has her talking to herself and twitching. It's breaking my heart because not only is it hard to see, but I know she can't stand being doped up like that.

I got up today at 6:30 am to get ready for my first 5K; this one to raise money for the touchdown club at Harper's new high school. I had my number and chip and was just standing around waiting when the phone rang. It was Ray. Debbie had agreed to let him come visit and he's been checking in with the nurses' station every morning (as have I) to see what kind of night she'd had. And of late, they've all been bad. Apparently, last night she was up out of bed roaming the halls in pain. She fell in the bathroom and now has swelling under her left eye. 
Ray decided she was on a downward spiral toward "the end", but to his credit he quickly packed  his bag and had his dad drive him to Debbie so he could keep an eye on  her "24/7" (his words). The thing about Debbie is she's so freakin' worried about being a burden on someone that she says she doesn't want someone there 24/7. The nurse did tell Ray while Debbie was in this state she would need someone with her or they would have to put some sort of alarm on her to keep track of her.

After the race, I got to Debbie as quickly as I could. Ray was there and DeAnn and her husband Jim followed soon after. We quickly tried to access her condition, asking if she'd eaten, what her lastest vitals were, etc. I was so happy that the nurse watching Debbie actually listened to me. When I had called this morning complaining about this foggy state my sister was in and asked if it was the medications, the nurse on duty replied it was probably because the cancer had spread to her brain. Say what????  I told him that was the first we'd heard of that and that the last scan didn't show that and I'd really like to know if that was the case. I just love Belulah who was there today. It was her first day and she really listened when we told her Debbie was remarkably clear headed on Sunday and Monday and even has moments of extreme clarity before she's given her meds again. They called the doctor (on call) and adjusted her meds several times today not only to try to better relieve her pain but to  increase her lucidity.
About 20 minutes ago DeAnn called me to say after the latest adjustment Debbie just got right out of bed as pretty as you please and headed out to the patio. It was all DeAnn could do to catch up to her. I got to talk to Debbie for a minute...she was hoarse but definitely in the moment instead of the "mumbling to herself" zombie she'd been the last few days. That good news was short lived as she wanted to go back to bed fairly quickly and now seems to be resting comfortably, as least in the short term. She agreed to let Ray spend the night but only on the promise he's leaving in the morning. I'll get up at 6:30 again, get a breakfast biscuit for Ray and head over there. I think God might have been a little busy the last time I asked this so I'm going to try again...."Please let the is be the start of some good days for our sweet girl."

Sunday, June 7, 2009

"Right now, I don't feel like there's anything wrong with me."

I met a bunch of angels today. Mere mortals may not be able to see their wings but if you have a loved one with cancer you can see them.

My brother and sister and I went to get Debbie from Piedmont today and take her over to Atlanta Hospice. She's going to my sister's in a couple of days but wanted to go there and get her pain medication under control. After what the doctor told her we looked around for a great hospice and the word of mouth on this place was wonderful. Debbie had to sign a ton of paperwork, but basically, now she has no more chemo, no more doctor's appointments, no more scans, her medication is dispensed by hospice and they are responsible for her pain management and her care. 

Every time I talk to someone there on the phone I burst into tears because they are so understanding and compassionate, telling me how they will take good care of my sister, and of us. When we went to pick Debbie up at the hospital she cracked me up. She was up, dressed, totally packed and ready to get the hell out of there. I wouldn't let her ride with my brother because he smokes and the smell of the car makes her sick, but since he's great at directions (and I'm not) he led the convoy. From the moment we pulled in and Doug came to get Debbie with a wheelchair, we knew we were in the right place. She and Doug made each other laugh and he said he could tell they were going to get along great. The facililty was unbelievably beautiful and felt like a home. There is a living room, a chapel, a library and a beautiful garden you can walk around in or just sit and think.

Debbie's room looked like something in a gorgeous hotel with tv/vcr/dvd, recliner, table and some french doors that opened to a private patio facing the gardens. She immediately went out and sat in the sun and said how good it felt on her face. A pair of ducks came up and she fed them crackers, explaining how if two ducks are in love the male lets the female eat first (which he did). Then we walked around the garden and sat (again in the sun) on some stone benches, and Debbie said at that moment she felt as though nothing was wrong with her. You have no idea how hard it was for my sister, brother and I not to burst into tears.

My 15 year-0ld daughter, my sister-in-law Joanne and I spent the weekend doing a rush extreme makeover on the room Debbie will be staying in at my sister's. (Glenn, honey, if you're reading this I WILL pay back AMX!) We worked from 10 am until 8 pm (not counting the time running around hunting and gathering stuff for the "redo") but it was the happiest kind of tired you can imagine. When I called Debbie to ask her what color she'd like me to paint the room she said I should ask DeAnn, because it's her house and I said, I'm asking you because it's your room. I felt strongly, rightly or wrongly, that Debbie shouldn't feel she was a guest staying in her niece's old bedroom; that it should be a fresh place for her. That funny girl, said she'd like the room to be light blue...and then she added, "with tan or brown sheets."

I called her a couple of hours ago and she sounded wonderful. As opposed to the drug regimen she'd been on in the hospital, the only drugs she'd had were her pain patch, a percocet and half a blood pressure pill. She'd even eaten!!!  She'd taken a shower in her fabulous bathroom and was all settled in looking for a movie to watch before she fell asleep. Dear God, please let this be the start of some "good days" for our sweet girl.


Thursday, June 4, 2009

The hardest thing

So much has happened since my last post...both good and bad and I'll get to it all soon.
But it's almost 11 p.m. and I was at Piedmont Hospital for 10 hours with my sister (and let me tell you, it was an honor to be there).

I was there when the doctor (not her regular oncologist...he was on vacation) came in to tell her she had bad news about the cancer. The chemo isn't working, the cancer has grown and there is nothing else they can do. They've recommended hospice. They're trying to get Debbie's pain under control which of late seems like an impossible task... she's way beyond the chart they have hanging in the hospital room. She has a lot to think about in the next few days so we can begin to get the hospice set up and get her somewhere she'll be happy and safe and, I pray, pain-free for at least a while.

Watching her suffer and knowing how this is going to end is the hardest thing I've ever done.
Harder than us being taken away from our parents; harder than having both our parents die. I'm able to keep it together while I'm in the room with her, but if I walk out in the hall, I just fall apart. I'm so freakin' stupid, that I actually believed after all the crap we put up with in our youth, that we were somehow untouchable...it would simply be too unfair. Well, I couldn't have been more wrong.


Monday, May 25, 2009

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.



Thursday, May 7, 2009

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.




Saturday, May 2, 2009

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.

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

Friday, April 10, 2009

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"

Sunday, April 5, 2009

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

Friday, March 27, 2009

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.

Wednesday, March 25, 2009

A missed call and the riot act is read

While I was at the office today I noticed I'd missed a call from D., but fortunately she had left a voice mail. She had received the recent letter I'd sent; I'd included a small white gold band for her to wear while she was going through treatment so she would know I was with her in spirit. She also laughed and told me to cancel the hair appointments I'd made for the two of us for next weekend. The nurse had told her all her hair would be falling out in about 14 days. Damn! I thought I had longer than that to get her to a salon. Bless D.'s heart, but she is in dire need of a haircut. When there's no money that's not exactly something high on one's list of priorities. Her hair is really too long for a 52 year old woman and it's been colored and is basically dry as hay. Nina at the salon had told me they had an excellent conditioning treatment and I'd hoped to talk D. into a shoulder length cut and a color closer to her natural color. Oh well, guess I'll talk to her and see if she wants to go the wig route.
I tried to call her back a couple of times with no luck, but fortunately R. called me back late in the afternoon. Ohhhhh! He was in a state.
Seems Debbie was in a tremendous amount of pain. What's tricky about her pain managment is that she also suffers from Reflex Sympathetic Dystrophy Syndrome (RSDS) which can cause her to have an episode which results in her blood pressure going through the roof. RSDS is what's known as an "invisible disease" with no outward symptoms. From what I've learned the body experiences some sort of, often minor, injury but has a pain response that is disproportional to the injury...meaning a pulled muscle could feel like you're being boiled in oil. Stress is one of the things that can trigger an episode, which is why D. hasn't worked in three years. She pulled a nerve in her neck several years ago when she couldn't catch her breath. Of course, now with the lung cancer diagnosis, we all wonder if that was the reason she couldn't breathe.
R. said she has three different doctors (one treating her for the RSDS and two from the hospital in Macon where she's had testing done) who all said she should be on Fentanyl for pain and would be happy to talk with Dr. J. Well, apparently Dr. J. did not concur and that set R. off.
R. is a good ol' Southern boy and he basically told the doctor, right there in front of every one in the office, since he was such a know-it-all, R. was going to take her to the ER and get her admitted and Dr. J. could just deal with that! Suffice to say R. didn't use the most genteel of language with Dr. J. and jaws were dropping to the floor.
R. did just as he said...they have D. on some heavy drugs for pain and are getting ready to move her to a room and keep her for observation. I could hear her in the background sleepily saying "Hey, Sheri. Hey Sheri."
Bless you, R.

Next post: I-75 is the seventh ring of Hell

Monday, March 23, 2009

Kindness all around me

Becoming the de facto advocate for my sister has put a crimp in my political activism. I'm sure the White House and Congress aren't missing my kvetching one little bit.
D. had her first chemo session today. I haven't spoken with her but her boyfriend R. called me around 7:30 p.m. to say they were back home after having spent the entire day at the infusion center. He warned me that we have to be careful not to bring germs/infections around D., as her immune system is severely compromised.
R. is a good guy. He has his own issues, but he's taking on the responsibility of caring for D., making sure she gets to all her appointments, takes her medication, etc. In my book, that makes him eligible for sainthood.
Found out today that the company that makes Oxycontin does have an assistance program, that if D. qualifies, she'll be able to get a month's supply of meds for around $25. That would be such a help.
The last few days I've been overwhelmed by the kindness of folks that don't even know my sister. When trying to write on my friend V.'s facebook wall, I somehow announced to the world that my sister was sick and have been showered with concern and prayers.
My neighbor S. told me of a place where D. and R. can stay for free during treatments if they don't feel like driving the hour and a half to get home, and S.'s friend, P. knows where D. can get a wig for free if she wants to go that route, when her hair falls out, as Dr. J. has told her it will.
(Doctor's don't know everything, right???) And when I walked out of work today, my boss pressed a wad on money in my hand, to help my sister pay for her meds. What an angel!
I also got a touching email from my best friend today. She and her daughter have had to deal with the recent death of both a beloved family member and a friend.
They've come up with some strategies for dealing with grief that are so wonderful they need to be out there in the blogosphere. They said I could share:

We've been talking about how we aren't given time to be sad in our world. Someone dies, loses a job, gets sick, gets divorced and we say suck it up! move on! get a grip! They used to wear black for a year when someone died, now we take a day and head back in, and if we're sad, we get a prescription to make us happy again. People used to go to bed early, stay in bed all day, drink lots of liquids when they got sick. Now we say, take a pill and hand in that report first thing in the morning. E. and I say: bullshit!
Your sister is dying...of course you're broken hearted! We expect you to be devastated: no excuses, no apologies.
Here's our strategy for dealing with modern day sadness; feel free to use it.
Wear p.j.'s as often as possible. Slipper socks, too. Drink gallons of tea: hot or cold, sweet or unsweet. Avoid everyone you don't really like. No being polite just to have company. Eat chocolate. Find a cat to sit on your lap. Buy yourself flowers. Lots of them. Avoid any sappy, sad movie that might come your way. Watch a lot of "Friends." Sleep as much as you like. The idea that sleep is an escape is true, but we believe escapes are o.k. If someone asks how you feel, say: sad. And tell them why. No apologies, no excuses. I love someone and they are hurt/gone/leaving soon is nothing to apologize for. It's the reason we're here.
And take your time. Ask yourself why you're here, is there a god, who am I, where is more chocolate. They're slow questions that flow naturally from loss, and they give our life meaning. They help us heal and grow and make us strong, even if we don't like the answers.
Finally, wrap yourself in a warm blanket of blessings. Look out the window and see the buds springing, the dog taking a drink from the pond, your little boy hanging from a tree. Listen very carefully to the end of the day. Build a bonfire and sit silently until it dies. Hold your almost grown daughter in your lap and stroke her hair. Wake your husband up in the middle of the night just to talk. Take it easy on yourself. Let the phone ring, forget to wash the dishes, don't bring home any work, tell the kids you're not taking them to Disney, because you're sad, and it's o.k. to be sad. They need to hear it from you, because no one else is going to say it. And then when they say something absolutely silly, laugh. That way they'll now they're a comfort.
One day you will feel better, though 5-10 pounds heavier that when you first found your sadness. And the next sadness that comes your way will remind you of this one and it will comfort you to remember the times spent in p.j.'s, drinking tea, sitting with the cat, sleeping.

Next post: A missed call and the riot act is read



Pardon our mess

Because of the way blogs display posts (from newest to oldest) my husband has attempted to teach me how to link you, dear reader, from the first post to the next, should you desire to have a read.
Let's begin.

First post: The light bulb moment

Sunday, March 22, 2009

The Backstory

I'm the oldest of five kids so, yes, I suffer a bit from the "oldest child must take care of everyone" syndrome. When I was thirteen and my youngest sister was only 6, we were taken from our parents and parceled out to relatives, foster homes and group homes. Needless to say, it was hard to maintain the sibling connection but as we've gotten older and theoretically more in charge of our lives, we've tried to strengthen that connection. So while I'm a big sister to many, for purposes of this blog, I'll focus on D., because this is her story.
Growing up D. was always the "cute one" while I was the "smart one." D. got attention from boys, I got attention from teachers.
While I was growing up, I got good grades, went to college on a scholarship, worked on my career, married a great man when I was in my mid-30s and had two kids a couple of years after that.
Like most people I was selfish with my life in my 20s and 30s, trying to find my way and rationalizing that my siblings all had lives of their own.
But D.'s life was very different.
Our mom died when D. was 15. D. was pregnant at the time and went to a home for unwed mothers.
She didn't finish high school (though to her credit, later got her GED), married early and had another baby. The marriage was abusive and she eventually got out. She later had, at least for a while, a seemingly happy second marriage and another baby. But she smoked too much and drank too much, possibly to deal with things in her life she kept only to herself. I do know when I got married in 1990, all my siblings made it to Baltimore for the wedding and she brought vodka and orange juice along for the drive and the glass never left her hand.
So to put it mildly, she's had a lot of crap in her life and just seems to never catch a break.
So this cancer diagnosis?
One more crappy thing she has to bear.

The light bulb moment

I've been thinking for some time I might like to start a blog, but I had a hard time nailing down what would be fun to write about.
Well, I know what I want to blog about now, but it's not going to be fun.
My sister, D., was just diagnosed with incurable lung cancer. We're all still in the shock stage at the moment but gearing up to help her however we can.
I'll be using this space to chronicle her journey for her. I'll try to keep the "woe is she" stuff to a minimum and concentrate on keeping her pain free and enjoying life for as long as possible. cheers.

Next post: The Backstory