Coming Home

The last few days in the hospital were loaded with anticipation.  I would carry my iphone with me and wait for the calls from the nursing staff because Phil had directed them to call me about all of his medications because he didn't trust himself to make any decisions.  I would run up to the hospital at a moments notice hoping to catch the doctor with his surprise visits.  We never knew when they would come to give us an update.  Will he come home today, this week, next week?  It was always on our minds.  I had tried to wheel hubby outside in a wheelchair just to test the waters the second week of his stay and also had a visit from our little dog Maggie Mae.  Both proved to be too much for him too soon. The third week, we had another visit with Maggie Mae and two trips outside which felt like a trip to the beach for Phil even though it was just a view of the hospital parking lot with Phil wrapped up in blankets and he was still cold.  Phil was able to stay outside for about 20 minutes and Dr. Davis actually found us on our outside adventure one evening and it was the beginning of the signing of our pink slip.  We were both feeling a little more confident about handling the pain if and when it appeared at home without the help of the wonderful family of nurses that we had grown so close to.  Leo was our favorite.  Even when he wasn't assigned to Phil, he came to visit.  His heart was big and he cared.

Maggie Mae going to see Daddy

The decorated entry

21 days after we had taken Phil to the emergency room Phil called me and said, "Come get me!".  But, I hadn't hung the Welcome Home Banner yet and hadn't put the finishing touches on the house!  My daughter Tara and I scrambled to find the perfect place to hang his banner and we tried across the stairs, across the front entrance, and finally ended up putting it on the fireplace.  We were sweating by the time we found a place where the tape would hold knowing all the while Phil would be tapping his foot wondering where we were. I had taken a couple of hours the Sunday before to play in the dirt and plant some flowers and plants and decorate the entry way in preparation for Phil to come home and prepare for all of trick or treaters.  I was excited but so nervous all at the same time.  Phil was ready and he wanted me there now!  I could feel him breathing down my neck and he was several miles away.  I wanted his homecoming to be perfect and I felt like I was getting ready for our first date.  I was almost laugh/crying.

Tara and I got to the hospital and Phil was dressed in his Kentucky gear, baseball cap and all.  The last few days of his stay he had refused to wear his hospital gowns and had worn the pajama pants and t-shirts that I had bought for him.  He had several visits from his buddies like Steve, Kevin and my brother Greg which helped lift his spirits so much.  One of the techs helped us find a cart to load up his stuff.  You would be surprised how much crap you accumulate even in a hospital in three weeks.  The cart was overloaded and we all had our arms full and Phil was rolled out with lap full of stuff too.  Me being the pack rat that I am, I was taking rubber gloves (I could use them to clean) and anything else that I thought might be functional that wasn't tied down that we had paid for.  I know, that is so stupid right?  Well some of those things came in mighty handy, can't say here what things did come in handy but they did!



The first night at home was a good night even though we had scrambled to get his medications filled and some were not available and getting out of the hospital at 7 p.m. made it almost impossible to get in touch with the doctor and get what he needed.  Since pain was what we feared the most, Phil panicked at the thought of not having his meds so we didn't rest until we had the minimum of what we might need to make it through the night.  The pharmacy didn't have the most important pill in the milligrams that we needed so they couldn't fill it and we had to go get another prescription.  It was a mess but he needed his morphine.  It was his lifeline.  Phil was happy to be home but he had a lot of trouble getting in and out of bed.  He was used to the hospital bed and had bars to hold on to.  We had a thick mattress which restricted his movements and he had trouble even rolling out of bed so he used the bed frame and the nightstand for temporary leverage. 

With his weakened state he was totally exhausted the next morning.  That morning we lined up all of his meds and I took out the pill organizer that I had purchased at Walgreens with a.m. on one side and p.m. on the other and we took out the list that they gave us from the hospital.  This is when I started realizing the huge responsibility of managing meds. I have to admit, I messed up a couple of times maybe three but cancer patients have a lot of medications to take.  Some to remedy other medications.  It's a vicious cycle and what's funny is when you go to a different doctor and they ask you to list the medications and you actually start rambling off big words like Dexamethazone, Thalidomide, etc.  HA!  I've got some of them down but here's the kicker, they've all got a couple of different names and then there's the generic name and then there's the chemo names.  I won't bore you with all of them because it means nothing to you or maybe it does but we got an education and we learn something new all the time.  Now I am not an organized person but you have to stay organized with meds or you are in danger so every Sunday, that's my morning job.  I take the little red Starbucks bag that we store all the pill bottles in that are labeled and take them out one at a time and put it in either slot seven times and then keep out the bottles that need to be refilled that week. 

After a couple of days, we got into a routine but the holidays were right around the corner and I had dread in my heart for the first time ever for both Thanksgiving and Christmas.  I just didn't have it in me.  I was driving home from a quick errand, they were always quick because I couldn't leave him for very long, and all of a sudden a wave of sadness, fear, anger, loss, confusion, loneliness, and basic devastation overcame me while I was driving.  I had not cried.  I pulled over about a block before our home and I just lost it.  I let it go and wept until I was sobbing and was very vocal about it.  It felt good. Sometimes you just need to let out a whopping, loud, crazy cry.  I hope no one saw me.  They would have thought I was nuts but I needed that moment of insanity to clear the path.

The Hospital....

If I had to describe the hospital stay I guess I could sum it up by saying that it was a blur and a nightmare.  Those tippy toes that I had been balancing on soon came slamming down like Frankenstein feet and everyone on the fifth floor of Baylor Grapevine Hospital on the Oncology wing knew when I was there.  It wasn't long after Phil's stay began that I had a nickname.  Boss Lady.  That's right Boss Lady and it was given to me by one of the male nurses that didn't act quite fast enough when hubby was in pain.  There's that word again, PAIN.  He was just a little too nonchalant about getting it done and I was not too happy with his attitude and I had to put a little giddy in his up. 

Everyone that knows Phil knows that he is not afraid to ask for what he wants, he walks into a room and everyone knows he is there.  Many times we have gone to a movie that was sold out and once we got our popcorn and coke and entered the theatre the open seats were scattered so Phil would promptly find a row that had two open seats, one at the end of the row and one about 10 seats down and he would ask for every one's attention in that row and proceed to ask everyone to gather their things and move one way or another whichever direction he felt was better for us.  And guess what?  They did it.  Of course I would be hiding over in the wings hoping that he didn't make me crawl over too many people but if I had to, I would apologize all the way down the row.  Phil was not this way under the influence of drugs in the hospital.  He was very docile and easy going, something I wasn't used to seeing so I had to be large and in charge.  I was very protective and extremely sensitive to his pain. 

First trip to radiation

Radiation started immediately and they sent an ambulance with two men to carry him away to the facility just across the street.  I followed.  They would blast an area that measured about 2 inches on his spine.  They were able to get several lesions that way.  This was part of his daily routine for 9 days in a row.  I decided to use that time to stay home and get some things done and try to work but on about the seventh treatment Phil called me crying, yes crying and hardly able to speak!  I could hardly understand him.  He had collapsed in the bathroom and clung to the sink, his spine pretty much giving way and he was in incredible pain.  That day they had sent a woman paramedic to take him in a wheelchair because he had been doing better.  They managed to get him into a wheelchair and he had to wait for them to send a stretcher with two men from the ambulance company.  He was almost passing out from the excruciating pain.  They got him back in bed and we waited for the doctor to come for his rounds that night. 

They have doctors for EVERYTHING!  They send in a doctor for your kidneys, a doctor for your blood work, a doctor for your spine, a doctor for your cancer, a doctor for your urine analysis, a different doctor for every part of your body and they don't step on each others toes.  One doctor came in our room on accident and charged for it!  Unbelievable!  They scheduled what they call a kyphoplasty on Phil's spine and it was to fill it with cement where they felt the cancer had eaten away at the spine.  They calculated that it was compromised about 20%.  Well, they were wrong, it was more like 50% so they couldn't fill it with as much cement as they expected to because it would compromise the good bone marrow that was left and hoped that it would leave enough room for it to grow back healthy and strong.  After surgery he would be fitted with a brace that was totally useless and cost a lot of money and now sits on a pile of stuff in our garage. 

The next 48 hours were probably the worst of the worst and I hope we never ever ever have to experience anything like it again.  I got to the hospital early the next morning after Phil's surgery only to find the nurse that relieved the night time nurse upset and vividly shaken.  She had gone into Phil's room and found him naked and the sheets off the bed and soaked in urine.  He was so out of it and was cold.  She immediately shot into action and got him dressed and sheets and blankets on the bed.  The night nurse was sketchy at best when I left him but I thought that he would be sleeping and I could go home.  I stayed all day and never left his side and was extremely upset with the situation.  He was so drugged up.  They had him on four different types of medication including a patch that was on his arm.  I stormed down to the nurses station and asked the charge nurse to come with me and take patch off immediately because my husband was obviously over dosed.  They had him on Valium, Morphine, Dilaudid and the patch.  When the doctor on call made her rounds that evening she asked me if Phil had a problem with alcohol which may be the problem for his reaction.  What?  Does your nursing staff have a problem with alcohol?  Then she asked me about the anti-depressant.  Thought that may have triggered something.  You've got to be kidding me.  You are put on an anti-depressant because you have been told that you have an incurable disease, I think they would have checked that out with the "Pain Management" Doctor that we were being charged for.  Thank goodness Dr. Davis returned a few days later from his vacation (it seemed like an eternity) and he immediately knew it was an overdose situation.  I guess I should practice medicine!

The same doctor that asked me if Phil had an alcohol problem also looked at me and asked me if I would stay with him that night.  She knew that he needed round the clock monitoring and their staff was not equipped to do that.  I of course said that I would.  He was so out of it and so drugged up that we had to put in a catheter and put him on bed alert.  We didn't want him falling.  I pulled the lounge chair up next to his bed and got a couple of pillows and a blanket and I held his hand through the bars all night long.  About every 20 minutes he would wake up and say one of three things: 1. Where am I?  2. Why am I here?  3. Why did I have surgery?  I would reply:  Honey, you are in the hospital.  Honey, you have cancer (he would say, "I do?").  Honey, you had back surgery today.  He would try to get out of bed and I would have to tell him he couldn't get up, "why?", "because you had surgery today", "why?", "because you have cancer", "I do?".  This went on and on.  It was like ground hogs day.  It stabbed me in the heart every time I had to tell him he had cancer.  He would just say "oh" and lay back down like a little boy.  Then I would feel him moving around and he would be trying to take his clothes off and I would have to tell him to leave his clothes on.  It was a VERY long night.  A VERY long night. 

The worst part of his stay after that was the pain.  He would get to a certain point and it was like he would fall off the edge and into the abyss.  He got so scared of the pain that he didn't think he could come home.  So, it became a 21 day stay.  He was scared to get out of bed because he fell short of the toilet one day and crashed down once again in the bathroom.  I had never seen my big man scared of anything before, ever but pain scared him like the devil himself.  It was evil.  It took time to feel safe, safe enough to come home and I honestly didn't want him to come home until I knew that his pain was managed.  I was just as frightened as he was.  But the day came and the staff all gathered around him and bid him farewell.  They had grown to love him.  Most of the staff was wonderful.  I know I just told you the bad part but for the most part, they were great.  We will never forget them and I'm sorry that some of them weren't there for our parting picture.

The Emergency Room Oct. 6, 2011

Saturday mornings are my time.  I get up and I make my coffee, turn on the food network channel, feed the three dogs, fire up my computer and immediately check facebook and two of my three emails.  I spend about a mindless hour on facebook while I'm tevo'ing the food network channel hoping to find something inspiring to cook for my family that week.  This morning was cut short when Phil came out of the bedroom about an hour earlier than usual with his eyes barely open.  He headed straight for "his" chair.  He was in pain and in a lot of it.  He couldn't sit still.  He couldn't really pin point where it was coming from, he just knew that he was miserable and it was unbearable.  I immediately went to my purse and pulled out the card from Dr. Davis's office that I had picked up on Thursday afternoon.  I called the answering service with a panic and told them that I needed to speak with Dr. Davis.  About five minutes later, I received a call from the doctor that was on call from the Texas Oncology group and I started trying to explain the best I could what Phil's symptoms were.  He stopped me and said, "it sounds like your husband is in a lot of pain so I suggest you get him to the emergency room right away".  Remember, this was Saturday morning.  I had not combed my hair, brushed my teeth and I was still in my pajamas.  I said, "yes sir" and hung up the phone.  I told Phil what Dr. Anderson, the physician on call had said and he started putting on his clothes the best he could.  I splashed some water on my face, pulled on a pair of jeans and threw on a top, combed my hair, put on some eyeliner, lipstick and slid into a pair of flats and off we went to the Baylor Grapevine Emergency Room. 

There at the Emergency Room, I dropped Phil off at the front and I went and parked.  By the time I got in there Phil was already sitting in the assessment area and they were taking his vitals.  They soon had him in a room where he could lay down.  When Phil is in pain his feet move 90 miles an hour and almost rip through the sheets, his feet were moving.  It seemed like everyone was moving in movie slow motion and it's just never fast enough for my liking.  But you have to smile and be nice and act like everybody is wonderful so they will be nice to you.  I know, I'm showing my human side here.  It's hard to be nice when your husband is in horrible pain and they are taking their sweet time walking at a slow pace in and out of the door.  You want to see them as panicked as you are and running with sweat on their brow.  I'm just sayin!  Anyway within the hour they had him hooked up to some strong pain medication.  He has had so many differnt kinds of pain medications since then I can't remember what he initially had.  It's amazing how quickly his pain is relieved once they put in the i.v. and it drips through his veins.  I am thankful for modern medicine and insurance more than I ever have been in my life.

They came in and took what seemed to be a gallon of blood for testing.  Well, here is where life gets real.  I had a National Sales Meeting that I had to attend the next week in Mesa, AZ.  Now I had emailed my boss and told him of the initial diagnosis and he had told me hands down, that I should do whatever I needed to do and family came first.  Wonderful news, wonderful guy.  Seeing that the following Wednesday was when I really wanted to be with hubby to get the news of the final diagnosis, I was going to try to fly out on Monday and return in time to go to the doctor with him.  So, I had scheduled a hair appointment.  I am 53 and I have gray hair and it grows out in what my girls call my halo.  That's because I am such an angel, NOT! Anyway, my halo was approaching about 1/2 inch around my face and I really needed to go and get my hair done and I had this appointment scheduled for a couple of weeks and you just don't cancel on a Saturday.  I was in a dilemma.  My hubby was now sedated, I knew it was going to be hours of waiting in the emergency room for the test results because NOTHING EVER happens fast in the hospital unless you are dying or bleeding.  I called my sweet daughter Tara and asked if she could come up to the hospital.  I know some of you are thinking, "what was she thinking?".  Well, I'll tell you what I was thinking.  I knew that if I didn't do it then, it wasn't going to get done for a long time and this was a window of opportunity and I have found now that I have to use those every time they come along.  I gathered my purse, made sure hubby was comfy and I passed my sweet daughter in the parking lot and off I went.  I got to the salon and I started telling my hair dresser what was going on and the tears just flowed down my cheeks the entire time I was there.  I didn't boo hoo, I just released.  I hadn't cried yet, just seeped.  I was back within an hour and a half. 

When I got back to the hospital, of course he was still in the emergency room and the doctor came in and said, "we are preparing a room for you".  I seeped again.  I was so relieved.  I had not slept in several nights because Phil had been in pain and had tossed and turned and paced and since the diagnosis, I was on pins and needles.  I wanted him in a place where I knew they could help him with his pain.  Pain is a new word and a new world that we would wrestle with and learn to deal with on a minute to minute basis over the next couple of months.  It rules every thought, every action, every minute and consumes you.  I don't know how people deal with it that don't have medication.  I know it was hard on hubby but it was hard on me too, because watching someone you love be in that much pain is, well, it hurts your heart like nothing else can because you are helpless.

We were placed in a room directly across from the nurses station and they immediately started him on chemo.  I was shocked to see a big yellow sign on the door that said, "DANGER TOXIC CHEMICALS" meaning that chemo was being administered.  Holy Toledo!  Danger?  This stuff was being put in my husbands body?  And I'm in here with him?  We are toxic?  What is this?  Why are we here and how did we get to this place and so darn fast?  I just didn't get it and I was so so so tired.  If I was tired, I know hubby was tired.  We had a chatty nurse, nice but very chatty and while she was getting Phil as hooked up and ready for the night, I was making my bed as comfy as I could.  The lights couldn't go off fast enough for me.  I kissed hubby goodnight and my head hit the semi-soft foam'ish couch/bed and I was out!  People came and went all night long but I didn't wake up once until 7:30 the next morning.  Hubby said I even snored.  Now that's tired! 

Sunday morning Phil was feeling pretty good with the morphine and the attention he was getting.  For those of you that know him, you know he loves a good conversation and loves to find out what your background is, what your family history is, where the origin of your last name is from, etc.  Me, not so much.  I was ready to go home, get showered and cleaned up because remember, I had to leave Saturday morning without showering so I was living in a two day skin suit that had not been bathed.  I had my hair washed but I don't do well when I don't have a chance to shower.  So off I went.
Before I could get back, I had friends calling me telling me that they were waiting at the hospital but didn't want to go in the room because Phil was asleep.  Wow, friends Stephanie and Todd from Ft. Worth had driven all the way over with the most beautiful flowers (that lasted almost the length of his stay by the way) and were there before anyone else.  That meant the world to me.  I got there and we tip toed into the room and woke Phil up.  He was pretty worn out.  Later that evening we had more friends, Steve and Debbie, Tim, our daughters Erin, Aubrie & Tara and that just about did him in.  After a couple of hours of visiting it was time to tuck away for the night. 

Phil was so jealous of my bed semi-foam couch/bed from the night before that he asked if he could sleep there, so I made it up for him and I kissed him goodnight and he sent me home.  After I left he took his i.v. pole and rolled it to the other side of the room and went to sleep on the couch.  He neglected to tell the nurses of his plan and when they came to check on him during the night, they got very upset at first because they thought he was MIA.  They couldn't see him but turned on the lights and found him sleeping soundly on the couch.  There was only one problem.  Phil is what I call a thrasher.  He does not move timidly he has large moves so he inadvertently pulled his i.v. out in the middle of the night and there was blood everywhere when he woke up the next morning.  This was the beginning of a very long and very interesting hospital stay.

Reflecting

Looking back.....The pain, when did it start?  Phil had been in between opportunities so it was a good time to make some home improvements.  Phil loved working outside and several winters ago our patio covering had given way to the weight of the snow and smashed smack dab in the center of the beautiful granite slab that Phil had single hand idly laid the summer before.  I was tired of feeling naked in our back yard and lovingly suggested that he build one of his famous patio coverings.  He was strong and like Popeye in my mind so why couldn't he do it by himself?  He never complained.  But the pain was starting then.  Up and down on the ladder he went. 

Later into the summer, each time Phil would try to do yard work he would begin to give out just after a couple of hours.  This was not like Phil at all.  He used to spend two days in the heat of the Texas summer and loved every sweaty drip of it.  I just kept the water coming and made sure he ate.  He was terrible about heading out into the scorching heat without food in his belly and then working until he was almost to the point of pure exhaustion and depleted of every morsel of nutrition.  He was a beast in the yard and I would quietly follow him inside the house and watch him through the slats of the blinds to make sure that he was still upright and not laid out from a heat stroke because I felt like I was always in charge of monitoring his limits because he didn't seem to know them because he was such a manly man, if you know what I mean. 

~The palm tree project~

Later that summer, I would go out after a couple of hours and find him sitting on the back porch and he was so perplexed.  He would say, "I just can't do it".  I asked him if he felt like he had a heat stroke or something because this was just not like my Hercules.  I would bring him towels soaked in cold water to put on his neck.  Heck, he planted an 8ft. palm tree a few months earlier all by himself.  What was going on?  The yard was finally at a point to where he felt complete so he rested.

The Journey Begins....Tippy Toes

It had been about two or three weeks in September of constant back pain. Phil had been sleeping on the floor in the den and had been rather grumpy. Thank goodness we had installed new fluffy carpeting the Christmas before. Phil had a grand opening at his new job where he had been employed for a whopping 2 months and he asked me to come and pick him up instead of walking to his car because he felt he just couldn't make the walk of the length of about two parking lots to get to his car. Phil was swallowing about 12 ibuprofen a day just to make it through. After a lot of prompting, he finally went to our general practitioner for a quick diagnosis of a possible kidney stone. Well, the next day the pain was so bad, he ended up in the emergency room where they promptly sent him home after running tests, giving him some pain meds through an i.v. and said they couldn't find anything wrong with him. They gave him a list of some doctors that they recommended he check out like a Urologist and a Spine doctor. Off we went.

Phil a week before diagnosis

The Urologist checked him out thoroughly and said that he couldn't find anything wrong but wanted him to come back for some more tests. Off to the Spine Doctor. We went and had an MRI done and and then rushed to the spine doctor but the office was already closed for the night so we slid the large packets of xrays under the door so they would find them early the next morning. Phil got the call to come in and visit with the doctor instead of just telling him that everything was fine and nothing to worry about. I didn't go with him but was waiting to hear from him and was getting ready in my usual way but it got later and later. I started to pace and panic just a little and started calling, then texting. After about an hour, I heard the front door open and then hubby Phil appeared in the bedroom and sat down on the bed. My first words were, "I've been trying to call you!". Phil was kind of quiet and he said, "well, I wanted to come home to tell you what the doctor said". Gulp. There was a spot on his spine, a large spot, and the doctor had scheduled an appointment with an Oncologist that afternoon. That afternoon! I have to admit, I didn't know what an Oncologist was.

While holding my breath and in my cute little flats, I tippy toed into the doctors office. Dr. Randall Davis was a very kind man, a soft spoken man with a serious undertone. I was unaware of the seriousness of what I was about to hear. The long and big words came out like a swarm of bees that engulfed my head and made me so dizzy that I almost passed out. Multiple Myeloma. "Wait a minute, are you telling me that my husband may have bone marrow cancer?". YES. The words were so final, so cold, so emphatic so awful! I knew bone, I knew marrow, and I knew cancer. I could comprehend that. While I was trying to find something to hold on to and the tears were burning through the back of my eyes and the trembling came from my very core, Phil was catapulted into another world of denial. The jokes, the light hearted gestures and comments seemed to flow and I was struggling to breathe. I was about to crash and Phil was doing his best to bury his head in the sand. Phil was immediately laid on the table and had a bone marrow plug taken out to confirm the initial diagnosis. We would know for sure the following Wednesday. This was Thursday. Dr. Randall had said, "I'm going to put all my eggs in one basket and say that what I think we have here is Multiple Myeloma and we are going to proceed immediately and begin treating it as such". I waited out in the hallway while Phil got a portion of his marrow ripped from his lower spine and still, he came out smiling and jovial. I was still trying to breathe and on my tippy toes.

We immediately went to the hospital across the street to get a full body scan. This scan was to find other lesions. Other lesions? What? Yes, Multiple Myeloma means, multiple lesions. Oh my gosh! How much more can we take in one day. The next day, Friday, we headed to the Oncologist office across town where Phil got his first dose of bone strengthener in the chemo lab, yes with the other cancer patients. Cancer patients! That is not us! This is ridiculous, so why are we even here? Well, we were there and we stopped and looked at the chairs that were all lined up along the wall with all the little bags hanging beside them. Some patients had hats on, some were sleeping, some snoring, some had hospital blankets on. It was a sobering sight. We held hands took a deep breath and tippy toed in to our first of many visits to the "chemo chair".