When It’s Too Late To Fix Leukemia

This week, a local anchorwoman died of complications from leukemia. She was diagnosed on Tuesday and was dead Thursday night. Two days. That was it.  She had been working as scheduled  up until the day she called 911 for a worsening bladder infection, with severe pain and nausea. Then she got the devastating news she had leukemia. The next day she needed emergency brain surgery, and never woke up. She was 29 years old. Vibrant. Professional. Animal lover. Upbeat.

You can search:  Jeannie Hayes, WREX-TV 13, Rockford, IL and get more of the media reports.

Of course my first thoughts were with her family, friends, and coworkers. They had no time to really register what was going on.  One day, she was working, the next day she finds out she has cancer, and on the second day she died.  Scary stuff.  I’m sure they’re still in somewhat of a state of shock. Her viewing was today at a local church.  A week ago, their lives were ‘normal’.  They had no warning.

As a leukemia survivor (also with acute myelocytic leukemia, subtype M3, or acute promyelocytic leukemia), it hits really close to home. I don’t know what subtype Jeannie had.  I found out about mine through a standard CBC (complete blood count) that was part of my annual diabetic assessment. My lab work was BAD. As an RN since 1985, I didn’t necessarily know what flavor of ‘bad’ I had, but I knew it wasn’t good- I had a bit of warning.  I had been scheduled for a bone marrow biopsy, but didn’t make it to that appointment before the shortness of breath led me to a 911 call. I have a history of blood clots in my lungs, and have been told to always get anything ‘funky’ checked out. I knew what my lab work looked like. And I knew that the shortness of breath was likely due to anemia. But I never know…

So, I’m in the ER for hours (crazy night there), and got admitted when the doc told me she didn’t know what was going on, but my labs had dropped by half in a couple of weeks (there wasn’t much room for them to drop). She was really concerned. The next morning I met my oncologist and within 10 minutes they were doing the bone marrow biopsy.  The morning after that, I got the diagnosis, was moved to a room in an area set aside for those who must have as minimal exposure to infection as possible, and started on chemotherapy pills.  I also got a PICC line inserted, even though my platelets were horrible; I had to have vein access for the IV chemo that started the following day.  I soon developed purpura on my legs and abdomen (tiny purple hemorrhages from low platelets)… not a good sign. Thirteen units of packed red blood cells (blood transfusion) and twelve units of platelets were needed during my stay… THANK YOU, blood donors.

Had I not gone for the annual diabetic lab work, I wouldn’t have lived. My oncologist told me that I was in really bad shape.  He called it ‘dead sick’ in his Iranian accent.  And I remember being too sick to care what they were doing. I had some infections set in, and was on vancomycin and gentamycin for about 5 weeks. For those who know what those are, they know that they’re strong antibiotics. I also was given 2 ‘protective’ eye drop antibiotics and steroids.  The ear infection and cellulitis into my neck and jaw were pretty bad.  The ENT doc had to pry my ear open to put in a ‘wick’ for the ear antibiotic drops to seep into- there was no opening in my right ear from the swelling. None…it was ‘slammed’ shut with edema and infection. The ENT also had to suck out the pus from my ear.  My temp was over 103.  For someone with no immune system to speak of, that’s not good.  I got very lucky.

If I hadn’t had that routine CBC, I wouldn’t have gotten any follow up, or known what was going on.  I’m so used to having something go wrong medically, I blow off a lot.  Note to self: don’t blow stuff off.  My ‘vision’ of my demise is me just going to bed, and not waking up.  My dad may have found out I was dead after not hearing from me for a couple of days. I hate to think if he would have come over and used his key to get in, finding me on his own… and my dog wandering around confused (we talk nearly daily as ‘attendance checks’- he’s 80 years old, and I’m a train wreck- we try to keep track of each other).

I’m so grateful I found out in time to get help.  I’m expected to be OK. I went into remission during that first 6 weeks in the hospital (April-part of May, 2010).  In April 2015, pending no relapses, I will be considered cured.  I’m one of the lucky ones. It was hell going through chemotherapy for 19 months, including 50 doses of arsenic infusions (IV), and 11 months of tretinoin, methotrexate, and M6mercaptopurine.  My body went through a lot. But, I got a chance to live.  APL is one of the most curable forms of leukemia, when it’s detected and treatment started immediately.

How I wish Jeannie would have had that same chance.  Even ‘just’ a chance to say goodbye, and have some time to do what she needed to do before ‘just’ not being here anymore.  I wish that for everyone.  IF someone ends up with cancer (or anything terminal), I wish them the chance to see their loved ones and for them all to have the opportunity to let go of each other, hard as that is.  I wish them the chance to ‘finish’ things. My understanding via the tribute on her news channel (WREX-TV 13), is that her family got there when she was in a coma after the emergency brain surgery. They came as fast as they could, but the cancer was faster.

I later read that the average time someone lives without treatment after the onset of the disease (with minimal symptoms) is 30 days.  Many people are diagnosed at autopsy.  The biggest ‘tip’ I could give anybody- if you feel something isn’t right, get it checked until you get an answer that makes sense.  Not everybody can be fixed.  But everybody deserves a chance.

For everyone else, it’s probably a good idea to know what you want to say to people, and do it.  Get things put together.  None of us are guaranteed tomorrow.

EDIT- 11/21/2012- Today, WREX gave info about the specific type of leukemia that Jeannie Hayes had. She had acute promyelocytic leukemia (APL).  This is the same type of leukemia I had- and makes it even more sad, since it’s one of the most curable when it’s caught in time.  Like Jeannie,  I had no specific symptoms to suspect cancer. I had routine lab work done.  Jeannie had the bladder infection, and it was ‘caught’ when she went to the ER for that.  I also had some bleeding issues- but was in the hospital, and because I was already being treated, I was able to recover.    My thoughts and prayers go out to Jeannie’s family and friends.  There was no time to say goodbye.  ❤

Exit Stage Vertical

Yesterday , Mary Kay Meeker left this earth from an ICU bed at a hospital in Waukesha, WI (USA).   Mary Kay’s hand was taken by her husband, and placed in the hand of God as she took her last breath after being taken off life support.  In that moment, she saw glory and a complete healing of her recent critical medical issues, and the residual effects of polio that she had as a young child. She was released from the stranglehold of sickness into the absolute freedom and peace of God’s love.  With that new health and perfection of her heavenly body, she saw Jesus for the first time, and began her exploration of eternity.  She saw our Lord !  She has spoken to Jesus face to face, and seen Him as He is !  Mary Kay is now part of eternity.

While people here will miss her presence, there are so many stories about Mary Kay that are surfacing to help soothe the wound of her absence. This is a woman who never met someone she couldn’t encourage or build up in some way.  Whether it be through her work in programming at Timber-lee Christian Center, or Awana groups, her church, or as a neighbor or friend, Mary Kay was all about the glass being half full, if not overflowing.

I often saw her on stage when I first met Mary Kay as a camper.  She was doing skits and ventriloquism acts during week long sessions, that continued all summer long.  She made those skits vehicles for how to live as a Christian. Even for elementary school kids, there was something about her that was ‘real’…and she liked kids. There have been numerous accounts of how she and her husband Greg would interact with kids in a way that let them know that being a kid was good enough.  Kids crave being valued by adults.

Mary Kay was an amazing pianist.  Even with her left arm being weakened by polio, she could crank out just about any song in any key at the drop of a hat.  Her ear for music was amazing.  I never saw her play the piano without a big smile while she simultaneously led 300+ campers in various camp songs from that stage in Cross Timber.  Music was a big part of who Mary Kay was.

It is hard to imagine Timber-lee without Mary Kay.  Oh, I know it will continue to be an amazing Christian camp, with so many activities and options for kids. It will still show the love of Jesus to kids of all ages. It will still be a great place for a winter retreat or group meeting.  But one of its core members is gone.  That will hurt, and yet those who know her know that she would want things to go on as scheduled, and for people to keep reaching past what they think they can do- to spread the love of Jesus to everyone who walks along Timber-lee’s paths.

Mary Kay was all about showing people possibilities they hadn’t even considered.  She boosted the good in people, and loved those who were going through not such great times- sometimes when she didn’t even know it.  Her influence didn’t require direct conversation (though she did talk with a lot of people about a lot of things, and really listened).  She lived her life in such a way as to show people ways of relating to each other, and to God. Even when I hadn’t seen her for years, I’d remember something about MK and be encouraged. She was a ‘feel good’ person.

Those of us who are Christians will see her again someday, and know the awe and wonder of seeing Jesus for the first time.  In the meantime, Mary Kay is probably setting up various choirs and singing groups, and seeking out those who always wanted to sing but didn’t think they could when they were alive on earth.  Maybe she’s organizing the angels’ choir into soprano, alto, tenor, and bass sections , and using that new left arm to direct them in some camp songs !! She has probably already met George Beverly Shea and the Goodmans, and has them helping with the choirs !

I can see Mary Kay walking through Heaven, gathering orphaned kids and talking to each of them- praising God for each of them.  She’ll have them singing or doing skits before long, to entertain the other folks up in Heaven. 🙂  If nobody stops her, she’ll have them doing something in Swedish (the Swedes up there will LOVE Mary Kay- yah, you betcha !!).   I can see her being welcomed by former Timber-lee folks who have been up there for a while, and them introducing her to people they know.

Mary Kay’s work here is done, at least directly- she planted countless seeds that will continue to grow.  It was God’s will that she be in Heaven with Him… she may not be working here on earth, but I’m guessing she’s keeping plenty busy.  I can’t imagine her having it any other way !

Hold On To Hope, Or Face Possibilities

I’m waiting, along with many others, for news about a dear woman who went into cardiac arrest last week, and is in a coma as a result.  The day they warmed her back up from the induced hypothermia (used to minimize oxygen demands on the brain while healing from CPR), her reflexes were present. The next day, she was following commands to squeeze her husband’s hand, and raise her elbow off of the bed.  That sounded good.  Daily reports were coming in, and while nothing else major was happening, there was a hopeful tone to the reports. Then Sunday, there was no word on her condition. Monday, there was information that she was struggling, and last night, the neurologist had done a test and met with the family early this morning.  When the time is right, information will be shared about what that was about.  As an RN, I can’t think of a lot of ‘good’ since there had been little  positive news for a few days.  I remember working on a neuro floor, and when the docs met with the families, there were major, and permanent decisions to be made. Occasionally, there would be some other treatment option, but not usually.

As I’ve been mulling all of this over for the past week, I’ve had so many emotions. Anybody who was a camper or on staff at Timber-lee Christian Center in East Troy, WI would have been directly or indirectly impacted by this woman. That’s tens of thousands of kids and staff members over the decades she has worked there.  Her talent for developing fun programs to get through entire summers, each one different, is indescribable.  She also has a great sense of humor, and is one of those people who just makes people feel good. Her piano playing ability is remarkable, and even more so, since her left arm is weak- but nobody would ever know that from what she can get a piano to do.  She has been an example of what Christian woman can aspire to. There isn’t an ounce of phoniness in her. She’s the real deal.

As an 8 year old, I first met her. She was in charge of the programming for that first year as a camper. Her talents brought stories from the Bible, and how to live as a Christian to life and made them applicable. I remembered her every year I was there as a camper (7 summers), and then when I was on summer staff, she was someone familiar when I was meeting MANY new people.  I wasn’t always the easiest to have around, but she was always kind and compassionate.

This last July, I got to sit down with her and her husband at a reunion at the camp. I hadn’t been back there for decades, and while it had always been my ‘safe haven’, I hadn’t seen anybody from there since the mid-80s. I’m so glad I had the chance to talk with her, and also to have reconnected on FaceBook several months earlier. She is someone who exudes life.  And now she’s in a coma, and is struggling.  That’s not her.  Oh, she’s had struggles- but she made them work for good.

And yet, I believe in a God who is omniscient.  He knows everything- and His will is perfect for His plan.  Not my plan, or her plan- but His plan.  I don’t know what that is, or why this all has happened.  Physiologically, I understand why her heart stopped and she needed CPR.  That isn’t hard to comprehend. But what is hard to understand is how her being in a coma, and so critically ill, is helpful to God’s plan.  I have to have faith.  I know that one day, I’ll be able to ask God directly, and know His reasoning. I do believe that.  And I have to have faith in the meantime. Sometimes that faith uses a lot of kleenex.  Sometimes that faith can’t see through the tears.  But it’s still faith.  It doesn’t waver, but it also rests inside a very real person with very real feelings.

So, now the battle is this (at least for me- and I don’t believe I’m alone in this)… do I hold out for hope and God performing a miracle? Or do I get myself ready to face the real possibility that she will end her work here on earth, and join those who have gone before her in Heaven?  I have to rely on my nursing knowledge to look at where she is- and ‘she’ isn’t lying in a bed on life support. That’s the logical angle.  That isn’t how she lives. She is a very vibrant and amazing woman. I believe God can use anybody in any state to speak to others, and yet being in a bed isn’t how she has lived.  When I saw her in July of this year- just 2 1/2 months ago- she was racing around the camp in a golf cart, tending to the visitors on the grounds. Smiling. Serving, encouraging, and active.

I can’t imagine what her husband is going through today after the meeting with the doctor.  He is also a ‘lifer’ on staff at Timber-lee.  He forges iron into custom ironworks and horseshoes. Yes, there are still blacksmiths!  Now, he’s faced with an incomprehensible set of circumstances and potential outcomes to sort through. But he seeks God’s will as well.  He seeks the glory of God, regardless of the loss or changes he may also face.

In the end, those of us who believe the doctrines and Biblical principles that are an integral part of Timber-lee know that we will all see each other again, no matter what happens here in this earthly life. We have that promise and confidence in what Jesus did on the cross. That makes no sense to someone who choses not to believe in Christianity as described in the Bible- and God gives everyone the free will to decide that. He doesn’t force eternity- or Himself- down anybody’s throat. For me, it’s a comfort -though I still feel the loss of people I care about in a very human way; those concepts are not mutually exclusive.  Christianity really isn’t about either/or… it’s about more and more.  I’ll get more time with my friend. I’ll get eternity with her. That doesn’t mean that I wouldn’t miss her until then.

I don’t know what will happen. I don’t know the private matters being discussed. I do know that the woman I know is vibrant, and unstoppable. Yet, now she’s suspended in time, in a very passive state. That’s not her.  I will still pray for healing. I will still pray for God’s will to be done (which might mean He takes her). But no matter what, I will never forget her impact decades ago, or even now as she triggers deeper thought about God, and why things happen the way they do… and in the end, she has once again strengthened my faith.

And those of us ‘watching’ can celebrate her life, no matter what.

Fragility and Resilience

There are just some people in life that ‘stick’ in memories.  Even after decades of no contact, and then with a reconnection on FaceBook, they bring back all of the good stuff that they’re associated with. Not just a fun afternoon, but the totality of the experience they were a part of years ago.  For me, that was an incredible experience as a camper and then a summer staff member for a total of 10 years at Timber-lee Christian Center in East Troy, Wisconsin (USA). Even though I went to a ‘solid’ church as a kid, Timber-lee has always been my spiritual foundation. People there live what they believe. It’s not lip service, and it’s not ‘on’ when people are watching only to be turned off when the kids leave. It’s legit.  It was 24/7 immersion in Christianity that was good.  Not the negative stuff that can be associated with Christians, but an authenticity that is hard to find. I couldn’t get enough of the place, and wanted to live there permanently (they didn’t have any openings for full-time campers…).

One of the people I first met when I was 8 years old became very ill this week, and her heart stopped. She was somewhere that provided her with near immediate CPR, and EMS was called. They got her heart restarted, and the ER she was taken to figured out the problem and opted for induced hypothermia (dropping her body temperature) and a coma to minimize any neurological complications (that nobody hears about with CPR). It’s assumed by most non-medical people that when the heart is restarted, all is well. That is the outcome in a very few cases.  Recovery is a process- not an event.

A couple of things have stood out in the four days since this happened.  First, I have learned an entirely different level of prayer.  I’ve prayed as long as I can remember, but I’m not sure that I’ve ever had someone come to mind as often as this incredible woman has, or that I’ve actually pleaded to God on behalf of someone else. I’ve prayed for healing for other people, but this has been different.   My sincerity in the past has been just as strong, and I’m not sure that I can really describe how this is different. It just is.

Second, I’m realizing how important those years at Timber-lee have been.  I’ve always been so thankful for the experiences I had there- whether the week long  sessions as a camper, or the 3 month sessions on the summer staff for 2 1/2 summers.  The people I met there are entwined with the experience.  They can’t be separated, and that’s  wonderful.  When I think of one, I’m flooded with the memories of the other.  It’s a package deal.  The feelings of safety, love, fellowship, and acceptance have never been replicated. Ever.

The fragility of life smacked me in the face four days ago (as it did much more so for those who are closer- her husband, and friends and family).  The experiences at camp have been my ‘go to’ memories to ferret out good days when I was going through rough times.  This week, there is part of that whole picture that is in trouble.  The reports come in daily, and I can’t get to them fast enough. I spread them to other pages where people are waiting for news. And we’re all praying.  There is hope.

I’m not sure I’m explaining myself all that well.  I’m  a bit overwhelmed, and in some ways I don’t feel entitled to that level of emotion, as we didn’t have contact for so long.  But it’s Timber-lee and one of the handful of people that has had an impact on me since 1972.  I even wrote a ‘report’ about my first week at camp when I was 8 years old, and she is in that ‘report’.  I got to see her in July, and it was so great to be back at the camp and see people who made it what it has been in my life.  And now she’s in a coma.

As a nurse, I know the possible outcomes. I worked in a coma stimulation unit at a brain injury rehab center many years ago. I saw some horribly sad situations. But I also saw some amazing stories and recoveries.  The people I took care of had been in comas for many weeks to months before they started showing signs of improvement, and the injuries were often because of external trauma (accidents). The damage had been more extensive, and intense. They started out in much worse shape, at least structurally; many had parts of their brains or skulls removed because of the damage.   My friend has already been reacting well to commands, and her reflexes are good. That gives me much hope for her outcome. Yet, I also know that there are no guarantees.  SO, while I’m thrilled every day with the updates, I hold back because of what I know and have seen. And yet, to the part of me that is still seeing Timber-lee as only existing with the people I knew there still like they were, I can’t allow myself to accept anything less than a full  recovery.  And that’s what I pray for, as do many, many others.  This woman is cherished.

I guess when I remember Timber-lee, I’m transported in time to the age I was then, and the feelings I remember when I was there.  It’s technically just a ‘place’…but it was much more than that to me.  I saw how Christians live in a way that I wanted to emulate.  When I’ve been in situations that were literally life-threatening, my first thoughts  often go back to something from camp.  That’s my feel-good place. It’s where I felt the most freedom to be who I really was during that time in my life.  And, I learned so much from the people I met there- either as a camper or on staff.  It also played a role in why I became an RN.

My friend who is sick is one of those examples of being a Christian that has been a role model, even in the 30 years we had no contact.  Her life has had an impact on tens of thousands of lives as she’s worked at the camp for decades. When I’ve thought of her over the years, I smiled.  When I hear music that she taught the music groups, or camp songs we sang, I smile.  When we’ve had FaceBook contact, I smile.  She’s a ‘feel good’ person.  That’s a quality I respect and admire so much. And she’s a very solid Christian, in ways that encourage and inspire- not judge or demean.

So, this is a hodgepodge of words that may not make sense.  That’s OK.  I just needed to write this.  I’m praying that her recovery exceeds expectations, and she can resume her life with this being just a blip in the totality of her life.  I can’t express what Timber-lee and the people I associate with it really mean to me. It goes beyond just a ‘place’.  The experiences were  heaven-blessed.  So many times the good I got from there helped  get me through some really lousy stuff. I can’t really explain that either, except to say that I felt that the God I saw in the people I met there was more real to me because of having been there.  Maybe that’s it- they showed me God.  They made Him more real.  I knew about God from the time I was very young, and believed in Jesus as a young elementary school kid…but I met Him at Timber-lee, through people like this friend who now needs Him to surround her with healing and restoration.

This one’s for you, MK.

Mom’s Final Days…Please Excuse Me While I Bawl My Eyes Out

This is still rough.  And yes, it’s long.

Mom had been through so much, and survived.  She had been through breast cancer, pre-cancerous tumors in the other breast (so bilateral mastectomies when all was said and done), reconstruction, metastasis to her right lung (so part of her lung removed), and then metastasis to her brain (so removal of a right frontal brain tumor, roughly the size of a golf ball). In the mix, she’d also had a hysterectomy, gallbladder removal,  and ankle surgery (she fell and broke it in the bathroom).   There were countless hospitalizations, radiation, chemotherapy, rehab, and progressive decline.

By March 2003, mom had been cancer free for 17 years.  Considering the number of sites  where she’d had it , that’s pretty amazing.  But the radiation for the brain cancer had left her with dementia.  Bottom line- she was goofy. Her memory was horrible.  She could still answer simple questions, and liked going out on rides in the car. She still had some things she enjoyed (if it came in the form of a candy bar, so much the better).  The day before she ended up in the emergency room in Sun City West, AZ, she had been to an art opening and visited with friends.  She may have had no memory of it later that day, but for the moment, she was happy.

Dad called me one afternoon to tell me something was wrong. She just wasn’t  right. Something had ‘dulled’.  I told him she may have had a seizure and to keep an eye on her. If he saw a seizure, dial 911.  I got a call not long after that from him; they were in the ER at Sun City West Hospital.  She’d had a seizure, vomited, and then been out cold when 911 got there.  He sounded scared, and he never sounded scared with all she’d been through before this.  I told him to call me with any updates.  I was near Chicago, so really depending on his reports.  I felt helpless.  I’m an RN.  I want to help ‘fix’ things when family and friends are sick.

He called me  a while later saying that they couldn’t get blood from her to do tests. Huh? This made no sense; they’d gotten an IV in her and had fluids going. Her urine test showed an infection. With the change in her normal behavior and the positive urine test, that told me she was septic. That is basic, BASIC knowledge in the medical field, especially with older patients.  I told him to tell them that they needed to restrain her, and get the blood. They refused to use restraints even briefly- so did an incomplete workup for their convenience.   We exchanged a few more phone calls (me getting more and more angry), and the bottom line was they were sending her HOME with him on oral antibiotics (well, their rental home).  A partially conscious woman with a urinary tract infection bad enough to make her lose consciousness and seize, and she was being sent home.  I was beyond livid.  Dad was terrified.  It took three people to get her into the car (a clue?), and he had to get help from friends on the other end to get her to bed.  Somewhere along the line, they got the antibiotic pills.

I’ll never believe that the ER people did what they needed to do because mom had dementia and was a ‘no-code’ (but she wasn’t actively dying yet; the no-code was not in effect).  And the hospital was full (like they couldn’t move her to another hospital; she NEEDED IV antibiotics and fluids).  The doctor signed off that she was safe to fly later on… that’s nuts, but she’d be out of his hair.  I’ll never know if it would have made a difference.  I just wanted her to have a chance. As it ended up, dad and I have to look at the one positive: she didn’t end up curled up in a nursing home, not knowing anybody or anything.

Over the next few days, dad came up with various ideas on how to get her home. She was taking the crushed pills in applesauce, and when I’d talked to her, she sounded exhausted but was answering the usual basic questions. She was doing better- but not great.  I didn’t know exactly how badly her body was doing, but I knew I supported dad’s plan to get her home.  Except the plan to drive her home.  I had visions of her dying en route, him being arrested for transporting a body, and mom left in the car in some car impound area…. sometimes an imagination is a bad thing.  I made him  promise me NO DRIVING HOME. He promised.  The final option was for her to fly to O’Hare where a friend of dad’s would drive me in with his van so we could let mom lie down in the back while he drove us back home. Dad would then drive on his own, and be back in about three days.  When I talked to her, I was satisfied that she was ‘back’ enough to be near her baseline.

Well, part of that worked out.  Dad got to Sky Harbor Airport in Phoenix, and the folks at American Airlines said she could fly, but only if he was with her.  He left everything but what he was wearing and got on the plane with her.  A few hours later, they were in Chicago.  I was allowed past the security gates to help get her off of the plane. The folks at American Airlines were wonderful. Her wheelchair was waiting (as were a few others- must have been handicapped day for flying), and the flight attendants said “Oh, you must be J”…. Uh, yeah?  Mom  smiled when she saw me, and we got her into her chair, and headed for the van.

When we got to the van, it’s like mom knew she was near home, and partially collapsed. She didn’t have to fight. I was getting nervous that we wouldn’t make it back home to the hospital where her doctor practiced. (why do they call it ‘practice’?  Shouldn’t they ‘know’ at that point?) I’d brought a blanket to use as a sling to ‘arrange her’ in the back of the van- which dad’s friend helped me do while dad put the wheelchair in the way back part of the van.  Dad was muttering about getting her home to bed, and after a good night’s sleep, she’d be fine.  I looked at dad’s friend, and shook my head no.  We weren’t going home. We were going to the ER.  If I had to get out at some toll booth area, and do some psycho dance, we were NOT going home.

Mom moaned most of the way back to our home town. Somewhere along the way, dad knew that we needed to go to the ER (thank God).  We got her there, moved to a stretcher from the parking lot, and thus began the end.  The ER people knew by looking at her that she was going to be admitted, and when they started an IV, they got blood.  Hear that, Sun City West ‘Hospital’???  It was BAD.  She was septic (duh) and her kidneys were failing. She also had a high blood sugar (she wasn’t diabetic and not on steroids).  She did know the name of her doctor when he came in to see her.  Dad and I stepped out into the hall with him and one of his first questions was about resuscitation measures that we wanted.   We’d discussed this before. If it got to this point, comfort was the primary issue.  It was fine to do fluids and antibiotics in this situation since she was in and out of lucidity, and she theoretically could get better…but her kidneys had never looked this cruddy. She was dying. The blood sugar issue wasn’t helping anything. Her white blood count wasn’t good.  We decided to get her admitted, see her through that and then go home to bed since she was relatively stable.

I’ve seen so many people die I’ve lost count.  That sounds rather cold, but as an RN of 18 years at that point, it just wasn’t possible to remember them all.  I knew the signs. I was seeing some of them, but I was still in and out of denial.  I felt OK going home that night though.  Dad and I told the nurses to call us if anything changed; we lived about 5 minutes away. We went home. She was awake, and tired, but looked ‘settled’.

The next morning, mom was getting the last part of her bath when we first got there, so we waited in the hall for a few minutes.  When we went in, she was awake, and recognized us. She was even drinking some nutritional juice-type drink (not the milky based stuff). She’d had a seizure during the night, and got some IV medication for that, but was doing a bit better. The nurses were wonderful about letting me see her lab work, and her white count was down, mostly from being diluted somewhat from the IV fluids. It was still in the septic range, and her kidney function was still in the ‘not-going-to-get-better’ range.  But she looked a bit perkier.  That was nice for the moment.

At lunch, dad’s friend (who did the van driving the day before) had offered to fly to Phoenix, and get the stuff from the rental house. He then offered to drive the car back to the Chicago area.  Wow.  We all went to the hospital cafeteria to talk about the plans.

We got back to mom’s room about an hour after we’d gone to the cafeteria, and there had been a huge change.  She was beginning to mottle, and was groggy. I’d seen that  mottling SO many times, and that is one of the things that people don’t come back from.  It’s when the circulation starts to shut down, and blotchy dark purplish-blue areas are visible.  Hers had reached her knees.  I ‘knew’.  I told dad that if he wanted to tell her anything he needed to get after it; she was dying. He figured she’d be fine (after all, she always got better, right?), but must have sensed something about my reaction. He asked me to step out for a few minutes. I did.   She was quickly going into a coma, and even at that point, I’m not sure how much she was hearing.  But it wasn’t just for her. I wanted HIM to have closure.  Then I took my turn.

During that afternoon, she went deeper into the coma, and I’d let her nearby brother know earlier that if he wanted to come, it was probably better to do so sooner rather than later; he and my aunt and cousin came.  I was also in contact with mom’s other brother, and only sister.  Mom’s mother was on her way back from  the winter in Florida and with the brother in Tennessee.  They were making plans to drive up here (near Grandma’s home also).  Her sister was looking for a flight ASAP.  A very few family friends also came; we didn’t make it broadly known what was going on.

Mom never regained consciousness, and I decided to spend the night at the hospital. She couldn’t tell anybody what was going on, and I wanted to keep track of how hard her breathing was (or wasn’t), and if she showed any signs of pain.  It was a long night. She did start having some respiratory patterns and sounds that indicated she was having a bit of trouble. I asked for some medication to be ordered, and the nurses were great about contacting the doctor (at about 3:00 a.m.) and getting her something. That helped her breathing ease up.

That was the same night Elizabeth Smart was found alive in Utah.  I’ll never forget that. One family was welcoming someone back home, and I was watching someone leave this earth.  I still remember that so clearly. CNN was all over it.  Mom would moan occasionally, so I’d move the chair closer to the bed and hold her hand and talk to her. I also let her know (whatever she could hear and  understand) that dad and I would be OK. If she wanted to keep fighting and come home, that was great!  We wanted her with us- but if she was just so tired of fighting all of the medical stuff she’d had go on over 20+ years, it was OK to stop, and  let go.  I also let her know that whatever had gone on in our relationship, everything was OK.  We were good.  It’s important to let folks know that the living will be OK, and give them ‘permission’ to be free.

She made it through the night, and remained in a coma.  Dad came back up in the morning, and we both stayed during the day.  Another couple of friends came by, but mostly we answered the phone calls, and just talked to each other.  Mom would only respond to discomfort, so we let her be.  I did agree to the air mattress the night before to make her skin less likely to break down- nobody knew how long this was going to go on (though the mottling is not generally something that happens until near the very end).  By that morning, her blood pressure was so low they needed an ultrasound gizmo to check it- so we didn’t bother with that other than once a shift.  The blood sugar wasn’t going to get fixed- so no point in making her wince and groan with each fingerstick and insulin shot; they weren’t doing much good anyway.  Had she shown signs that she was going to get better, I would have agreed to those things. At that point, it was just pain. She had no periods of even being remotely awake, and the mottling was getting darker.  She needed peace and comfort.

Dad’s friend had made it to Phoenix, and found the obituary mom had written for herself many years earlier, and left in her address book. He faxed it to his wife, who brought it to the hospital for us to have handy.  That was a huge help.

I was so torn about what to do that night. I didn’t want her to be alone, and dad wasn’t up for pulling an all-nighter (understandably at age 70).  I needed to get some rest if I was going to work the next night at 7 p.m.  But I really didn’t want her to be alone. The nurses were great, but it’s not the same as having someone next to the bed, watching.  I finally had to make the decision that I’d have to go home that night so I’d be OK to work the following night.  I hated that.  Dad knew I was struggling with that, but we knew that we could both be at her bedside within 10 minutes of getting a call from her nurse.  And we told the nurses to call for anything.  Anything.

Around 8:30 p.m. or so, her breathing got funky.  Like ‘here it comes’ kind of funky, but also somewhat labored, so I asked for the medication for her breathing to be more comfortable.  The nurse gave it, and it did help. Her breathing became less gravelly. (She didn’t have the ‘rattle’; it was different). At about 8:55 p.m., her breathing became sporadic, and I told dad this was the last pattern I usually saw ‘at the end’.  He was still hanging on to the idea that his partner of 46 years was just going through a rough patch and would recover.     I told him no. This was it.  And it was fast. Really fast when it finally happened.

At 9:00 p.m. my mom took her last breath. She was gone.  Dad and I were on either side of the bed, holding her hands. She wasn’t alone. She didn’t have any more pain or confinement to a body and mind that had been ravaged by disease and the effects of radiation.  She was free.  There was a brief moment a couple of seconds after she died when she looked like she had 30 years earlier.  I don’t know if my fatigue was making my vision wacky, or what- but I saw my mom. The one I’d known before anything was medically wrong with her.  She was at peace. I’d like to think that’s when she saw Heaven, and the Lord she loved so much.  She finally got to see the two baby boys that had each died soon after being born, that she’d never seen in life.  She wasn’t held back by anything.

On March 13, 2003, she was healed.