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."

Next post: Two steps forward, three steps back

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

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!

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

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

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."

Next post: It's all relative(s)

"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.

Next post: I Hate Roller Coasters

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.

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