Laughter is the best medicine...

Due to a sore throat and a fever I was forced to wait at home while my mom had the port put in to harvest her cells. I received a text message from Dana letting me know that the procedure to insert the port went well and Dr Schuster’s team would be up to harvest the cells in 20 minutes. The entire process will take 2 hours and then we will be forced to wait another 10 to 14 days as the cells are stimulated in the lab before being . As my sister Kelly has said “the light at the end of the tunnel is very bright,” but the wait is another story! I thought this would be a good opportunity to share a few of our family’s funnier moments and sweeter memories.

Let me begin with one of my favorite stories about my quiet and reserved cousin, Helen, who we are corrupting daily—Just after my mom was admitted to HUP we received the handicap placard that we requested when we thought she’d had a stroke. We have been using the placard to find a good spot near the elevators as we cart food and laundry back and forth for Dan while he stays by my mom’s side. On a day when Dana, Kelly and Helen drove together there was a security guard standing beside the handicap spot chose and Helen spotted him as Dana hung the placard from the rearview mirror. “Oh my God, somebody better limp when we get out of the car!” Dana and Kelly laughed and gathered up their gear to head into the hospital. They had made it as far as the Pearlman Center bridge before Dana realized Helen wasn’t with them. As she looked back she spotted Helen about 20 feet behind them doing some kind of limp that made her look like a handicapped penguin. She nudged Kelly and told her to check out “Gimpy” behind them. Kelly turned to admire Helen’s handicapped penguin impersonation and between her laughter informed her that it would have been easier to fake a heart condition! The guard was gone by now and the three stopped to use the restroom before heading to mom’s room in Rhoads. As they came out, adjusting their gear once again, the guard resumed his post at the desk. Helen resumed her limp.

Next, we will head back up to my mom’s room in the Rhoads building to share a private sporting event. As you know, my mom did end up developing pneumonia and we were forced to use a suction hose to remove any mucus she coughed up. This is a difficult thing because the ability to cough is something my mom is losing because of her illness, but sneezing is another thing. The nurse explained to us that sneezing is a reflex that you really have no control over and therefore, my mom tends to bring up more mucus when she sneezes. All my life it has been a running joke that my mom can never sneeze just once, a minimum of 3 to as many as 15 times in a row. We are just beginning to realize the irony involved with the fact that a strange, repetitive sneezing quirk my mom has had her entire life is now something that is saving her life, we will again chalk it up as fate, regardless of how idiotic it sounds. Now for the fun part, last Friday night left Dana and Dan with my mom during the monster of all sneezing jags. It was around bedtime so my mom was wearing the huge mitten on her hand that stops her from pulling at the feeding tube during the night. As soon as the sneezing started Dan jumped from bed to grab the suction hose and my mom starting swinging that heavyweight mitten as he closed in. Dan took position behind the head of the bed and made small jabs at my mom’s mouth with the suction hose as she landed a few roundhouse punches to his head. After 5 minutes of watching Dan ducking and weaving and cheering my mom on “That was a good one, Bonnie. Got a lot on that one” Dana could stand it no longer. She advised Dan to leave my mom alone and reminded him that there was not a thing wrong with her memory. The idea of future payback had Dan wrapping up the suction hose, “Next time we’ll call the nurse.”

My family is not an extremely religious group. That is not to say that we do not believe in God but you are not going to see any of us at Sunday mass. I have taught my children to believe and to always have faith in God as events occurred that required explanation. I did not sit down with them to teach them things such as God’s will when my mom became ill because I wasn’t sure if was a conversation I could make it through. So the sight of 3-year old Cadence kneeling by her bedside and making a steeple with her hands as I got her ready for bed that night had me surprised and charmed. She tilted her tiny head and closed her eyes and I listened in awe to her sweet voice as she spoke her little prayer. “Hello, God. It is me, Cadence Rae Given. Please make my meemom all better so that she can push me on the swing when I can go outside with no shoes. Thanks, bye!”

Four-year old Connor takes a different approach. When he told me last year that he wanted to be a food scientist when he grew up I stopped thinking along traditional lines when I imagined his future. He believes that if we simply bring Grandmom some hot soup she will be good as new. The key to soup, Connor tells me, is that it must be hot, so I am to “speed like the other cars” when I bring the soup to Grandmom. The funny thing is that he is not so far off the mark with his notion of driving in the city, which brings us to another Helen moment.

Driving home from HUP is a totally different nightmare. The traffic is severely congested and people are just not in the finest of moods. Dana picks her way through potholes, cabdrivers and panhandlers as she gets us to 95. One night we happened to leave at the same time as Kelly and Helen and tailed them for a bit before switching lanes and moving ahead. I am sure that Kelly and Helen do a great deal of talking and smoking during their drive home and this must have been what prevented them from noticing Dana and I leaving them behind at the traffic light. There is one intersection as you are leaving the hospital that always has people in an uproar, 2 lanes go straight and a third lane is to make a right-hand turn but only on the signal. It’s the signal that gets everyone, they all start beeping at the lead car in the turning lane, angry over the fact that they are actually waiting for the light to change from red to green. .This night found Kelly and Helen as the lead car with a silver SUV similar to mine, laying on the horn behind them. Kelly looked back and laughed thinking it was Dana and I being smart-asses and Helen proceeded to hang her entire arm out the window with her middle finger riding high. As the light changed and the silver SUV pulled alongside Helen was rewarded with a view of a woman she had never seen before in her life. “Holy fuck, Kelly, it’s not even them!” Later, Helen would inform us of how she could have been killed pulling a stunt like that, but Dana just believes she should have directed her finger at the panhandler who carries the sign that says SUPPORT A VET FROM 1964, she believes that if he hasn’t found a job since 1964 he is incompetent at best and Helen would be fairly safe flipping him off for blocking traffic!

Panhandling seems to be quite an enterprise in the city and I have to admit I am always a bit surprised at the audacity of some. During a visit to the McDonalds across from the hospital, a few of us had the pleasure of meeting Big Red, as Dana calls him due to an ill-fitting red baseball hat. As I said earlier, my stepfather will start a conversation with anyone and this brings us more knowledge than we care to have. After a lengthy conversation with Big Red, Dan informed us that panhandling outside of HUP can earn you $300 to $400 a day. I am sure this is the thought irritated Kelly when he walked up to her while she ate her meal with Helen and Dana and interrupted her conversation to ask for money. Kelly turned to look at him and her voice was firm and annoyed, “Excuse me. No.” she stated. The word “bitch” could be heard as Big Red walked away, causing the manager of the McDonalds to ask him to leave. After Helen finished eating she went outside ahead of Dana and Kelly to smoke, and after watching her look back and forth a million times, fearing Big Red’s return, Kelly rose from the table and said, “We better go out there and get her before she gives herself whiplash!”

You are loved, Helen. People spend most of their lives looking for the place they belong, please know that you have found yours, and it is right here with us!

We are go for launch...

After a rejection of the protocol and several revisions on Friday, we received word from Dr Schuster Monday night that the hospital review board has approved the T cell therapy. The phone calls went back and forth spreading the news and the excitement was mingled with relief, a little fear and a lot of determination. It is difficult to watch the disease progress and know that you are doing absolutely nothing about it; this approval gives us the opportunity to move passed the feelings of helplessness toward effectiveness. We have pinned all our hopes on this treatment and it has become, for us, the stuff dreams are made of. Our prayers will continue and will most likely be more intense than before, we realize we are not out of the woods, but would like to think we can see the light in the clearing.

I am well aware of the obstacles we face, but still hope lives here…

I've missed you, mom...

After worrying through the night and most of the morning Dana and I were able to leave work at lunch today to visit my mom. When I walked through the doorway of my mom’s hospital room I was greeted by a sight I just didn’t expect to see this day. My mom was sitting up in bed watching the bustle of activity in the halls on the seventh floor of the Rhoads Pavillion and she smiled as I walked into the room with Dana and Helen. She looked relaxed and almost content with her surroundings, her hair was clean and shiny and her eyes were lit up like they haven’t been in weeks. I went to her bedside and told her how wonderful she looked and she started to fuss with her right hand. I figured she had it tangled and when I removed the covers I was confronted with the sight of a white mitten about the size of a boxing glove, it looked like a huge q-tip on the end of my mom’s arm. I started to laugh, I couldn’t help myself. “You got yourself a mitten, huh?” My mom smiled and patted the side of her stomach that holds her feeding tube with the big, puffy mitten. “Yeah,” I said “it’s because you pulled that out! So, don’t do it again!” My mom smiled at me again and waved the mitten at me and clearly said the word “off.” My mom hasn’t even tried to say a single word in the past week and the excitement I felt at hearing that one word was indescribable so after I made her promise not to pull at her feeding tube I unhooked the Velcro fasteners on the mitten and removed it from my mom’s hand. She stretched her fingers slowly and then proceeded to reach up and pull the oxygen hose from her nose. “What the hell mom!” I said “Those nurses are going to come in here and put those mittens on me for Christ’s sake!”

She smiled again...

Outta here...

Yesterday my mom ripped apart her IV lines and removed her feeding tube and then proceeded to swing her legs over the side of the bed while pulling her paralyzed left arm across her lap with her right. She informed the nurse of her plans to leave and her nurse told us later that she would most likely have caught my mom doing a belly crawl to the elevator if the pain from the dislodged feeding tube hadn’t caught up with her. Dana and I left work in search of a parking spot at HUP at soon as the news trickled down to us and we arrived to find my mom coherent and extremely pissed off. I asked her if she was causing trouble and she said yes and when I told her to stop it she of course told me no.

She was sent in for surgery around 6pm to have the feeding tube adjusted and will have a CT to make sure nothing leaked from the abdomen. None of this is pretty and it does make me feel mad at the world because I have to experience it, I guess that is selfishness on my part. My mother is going through hell and I have the nerve to say I am mad at having to watch her do it. I know if I were more honest with myself I would admit that I am just trying to hide the fear from myself and others; it is choking me, this welling panic rising through my system. Please God, don’t take her. I stop myself from saying stupid things like “I can’t live without my mom” because I know that isn’t true, of course I would go on with my life, raise my children without her. The fact of the matter is I just don’t want to have to do that. I need her so bad and when I think of our lives without her the ripple of fear shoots through me and I feel like I am suffocating. And that feeling makes me a little angrier with the world and all its trials and tribulations.

Kelly and Helen are the “night crew” of my mom’s visitors so they were the ones waiting with my stepfather during my mom’s second feeding tube surgery. I spoke with Kelly after she saw my mom in recovery and she said mom looked okay but a little pale. Her breathing was labored due to the pneumonia she has developed and it caused enough concern with her surgeon that they gave her medication to reverse the sedation. This is fine except for the horrible understanding that it also reverses the efficacy of the pain medications as well. I went to sleep last night knowing that my mom would spend her night in a good deal of agony.

I have managed to keep my sanity because we have heard from my mom’s doctor that they will be collecting the cells on Friday to begin the T cell therapy. We have only received approval from the hospital review board to allow the cells to be harvested, but not permission to reintroduce them after stimulation. Dr Schuster has assured us that the approval for reintroduction will come; the hospital board doesn’t let you spend $25,000 in grant money to start a procedure that they have no intention of letting you finish. The approval for the overall treatment protocol for the T cell therapy requires the full board be present and that does not happen again until next Monday. The cells take 10 to 14 days to grow, so at least we can have them started while we wait for the full board meeting to commence.

God never gives you more than you can handle—but it sure does feel that way…

Every morning I get up and start the ritual of getting myself out the door. It is the same routine regardless of plans for the day. It doesn’t matter if I am going to work or to visit my mom at the hospital, I still need to shower and brush my teeth and my hair, if I remember. I guess the only part of my routine that is affected by the day’s plans is my shoe choice, I am quite certain you cover a few city blocks traveling from the parking garage at HUP to my mom’s room in the Rhoads building. I use to get up at 5 each morning and take some time to have a coffee before I showered and got ready for the day, it was the perfect amount of “me” time to start your day. Lately, the snooze button on my alarm has been getting quite a workout. I apologize to my husband because he has to listen to it until I decide to drag myself out of bed, but he just shrugs it off and says he knows how exhausted I must be. I don’t bother to tell him that it is not exhaustion that leads my snooze button addiction but the realization that “me” time is just not for me anymore.

My mornings are now jammed into half the time I need to get ready which causes me to rush to accomplish simple tasks like brushing my hair. I usually leave the house without breakfast or even that desperately needed cup of coffee. I can shower in 2 minutes and use about 8 minutes to brush my teeth and hair, put in my contact lenses and get dressed and I am still aware of the fact that I have too much time to think during this process. Thinking is not something I want to do right now, it usually leads to clutching the edge of the vanity to stop myself from going over that edge or vomit in the sink because some thoughts cannot be handled, even by your stomach. I have been told that this is not normal but at this point I have a real issue with what other people think about normal.

I am extremely angry at the progression of this disease. My mom cannot speak to me at all yet she understands everything that is said to her. I cannot imagine the frustration she feels being trapped and alone in her own mind, but I am forced to see it every day when I walk into her hospital room. She now has a feeding tube, at times a catheter and you realize how scary things have become when you start to count the IV lines running into her right arm. It always amazing me that I find all of these things just part of my daily life and they don’t knock the wind out of me on a regular basis. I have always been very aware of the effects of PML and I admit that it is much easier to read than to watch. I still don’t believe in my heart that this horrible disease will beat my mom and anyone who believes it will just really doesn’t know her. I have an extreme dislike for the resident attending who stood at the foot of my mom’s hospital bed and tried to explain to Dana and I that a do not resuscitate order would be in my mom’s best interest. Dana and I did not agree with her and gave her the option of leaving through the door of room 7006 or the window.

My mom is a fighter, stubborn to the core and I am counting on that to carry her through this nightmare. As I watch the way my mom’s condition affects those around her I realize just how much she is loved. My cousin Helen spends a few hours of each day at the hospital just to be near my mom. It brought me to my emotional edge when I watched my mom reach her hand out and Helen took it in her own and said “You have to get better Bonnie because I love you.” My mom and Helen are close and I know they love each other very much; it is just not something they say to one another on a daily basis. Before Helen’s mom passed away my mom stood by her bedside and promised her that she would always take care of Helen. I know that her love for Helen and the promise she made to her mom keep my mom fighting. My stepfather will not leave my mom’s bedside and does not allow anyone to discuss the possibility of losing my mom. I know most people think we are all living in denial of this disease and what it does but I know that our family simply chooses to live on the hopeful side—we owe my mom at least that much.

My mom is an amazing woman and is always there when you need her. All my life she has defended my choices and made sure I knew she was proud to introduce me as her daughter. I know in my heart that I would not be the person I am today without her influence.

Hindsight 20/20—Sanity 50/50…

Our HUP transfer vigil ended late Wednesday evening when the transfer team arrived just minutes after Dana and I left my mom’s room at St Mary Medical Center. We were about a mile from home when Dan called to let us know. He said my mom seemed relaxed with the transfer and as she would not have a private room at HUP, Dana and I decided it would not be worth making the drive that evening. We headed for home to regroup and get ready for the stream of train rides and meals at the HUP cafeteria that the week would bring.

The following morning Dana and I arrived at my mom’s room on the sixth floor of Rhoads to find speech and swallow evaluating her to see if she could be released to eat. From the look of things the release was not going to be any time soon. My mom has a deep, rumbling in her chest, the mucus is thick and wet and she has great difficulty getting rid of it. The speech and swallow specialist was using a suction hose to clear my mom’s mouth and as Dana and I unpacked our computers to work she hit a little too far and my mom began vomiting. She apologized to my mom as she reached for the basin by the bed and once my mom was finished she turned to change her gloves and help clean my mom up. While she had her back to my mom she continued to talk in a high, cheery voice.

“”I am sorry about that Mrs. Pine. You just let me change that gown for you and you will be feeling good as new in a jiffy.”

Dana and I were content to listen to the girl ramble on as our computers booted up, but a movement from the bed brought our attention to my mom. She had her eyes on the back of the speech and swallow specialist and was flipping her off. The gesture brought a smile to our faces and made me see my mom and not the disease. Who would have thought that flipping someone off would bring such joy!

As it turns out my mom is now unable to swallow at all without aspirating despite the thickness of the liquids. The attending physician came into my mom’s room later that afternoon to discuss our options. I am not going to pretend to remember a single medical term used in that conversation, the only words that pounded in my head were “feeding tube.” Yes, it has come to that. After considering the risks involved with the three options spelled out for us we decided that it would be best to allow them to insert a percutaneous endoscopic gastrostomy (PEG) feeding tube. It carries the lowest risk of infection and is a more comfortable and long-term solution.

PEG tubes are placed with the aid of an endoscope, the scope going down the throat to assist in guiding the placement of the tube through the wall of the stomach. The surgery is simple and involves little risk or discomfort at least that is what they tell you. The procedure takes about 20 minutes. The PEG tube extends from the interior of the stomach to outside the body through a small incision only slightly larger than the tube itself in the abdominal wall. The tube is prevented from coming out of the stomach by a very small balloon at the end of the tube which is inflated within the stomach after insertion. About three inches of tubing will protrude from the incision area. Initially, there may be some discomfort while getting used to using the system, from gas or air, or from adjusting to the liquid foods themselves.

That is my basic understanding of the tube and how it works. It is much easier to spell it out here than it was to sit in the waiting room of the surgery unit while it was inserted into my mom’s abdomen. Dana and I left the hospital Thursday night knowing the surgery was scheduled for 10am and we would need to be there well ahead of time. My mom seemed relaxed about the decision to insert the feeding tube as Thursday’s visit came to an end but a phone call from Dan while stuck in traffic on the ride into the city Friday morning told Dana and me a different story.

We arrived at my mom’s room 30 minutes later to find her flushed with agitation, her blood pressure was elevated and through her impaired speech I could make out the words “They killed her.” It took Dana and me 40 minutes and a dose of ativan to calm her enough to even ask her what was the problem. The procedure had been canceled due to her elevated blood pressure and we were left to try and convince her to allow doctors to put her back on the surgery schedule and then needed to keep her calm enough for them to proceed. Much easier said than done, but as I said before, we aren’t quitters and we believed this was best for her.

My grandmother was admitted to St Mary Medical Center in July of 2000 after vomiting blood in the waiting room of her cardiologist’s office. After stabilizing her, doctors decided it was in my grandmother’s best interest for them to perform a biopsy of a mass they had discovered in her stomach. As it turns out, they were wrong. After the biopsy my grandmother’s blood did not clot and she proceeded to bleed out as our family stood around her bed and respected the “Do Not Resuscitate” order she had in place. I was alone in the room with her when the bleeding started, thin and red, it poured from her nose and mouth and is an image I would not soon forget. I remember each second as it ticked by, pushing Dana from the room before she witnessed the scene that haunts me to this day, the pounding of my mom’s footsteps as she came down the hall to be by her mother’s side in her final moments. I know this is the moment my mom replayed when she panicked over the idea of her own “stomach” surgery and it is this nightmarish link between my mom and myself that allowed me to understand her and explain to her doctors what she meant when she repeatedly babbled the words “They killed her” as the ativan took effect.

My mom came through the surgery with flying colors and 2mg of morphine helped her get through the night with those same colors. Dana was at her bedside the next day where she remained the entire day, waiting to speak with her doctor. She made sure my mom was comfortable regardless of whether that meant an adjustment to her pillow or another dose of morphine. I took the day to spend with my children and waited for any news from Dana. A few text messages throughout the day let me know that my mom was doing well and a phone call after 9pm filled me in on the visit from Dr Schuster.

The latest MRI shows that the lesion has worsened but there are no additional lesions at this time. All things considered this is wonderful news. The hospital review board has still not come through with their approval on the T cell therapy and Dr Schuster said he will give them a push but if they do not come through by the end of the upcoming week he would like to start my mom on a malaria drug called mefloquine that has had some success with PML patients. The concern with the mefloquine is that its side effects include severe depression, anxiety, paranoia, aggression, nightmares, insomnia, seizures, birth defects, peripheral motor-sensory neuropathy, vestibular (balance) damage and central nervous system problems. Central nervous system events occur in up to 25% of people taking mefloquine, such as dizziness, headache, insomnia, and vivid dreams. I know what you are thinking; my mom has several of those effects already; that is what leads us to our biggest concern, if my mom’s symptoms worsen while on this drug how can we know if it is because of the treatment or the disease?

Dr Schuster would like to go this route because he said we want to be doing something for my mom and if review board approval comes through for the T cell therapy after the mefloquine is started we will continue with both treatments. I do have a lot of assurance in the fact that Dr Schuster is not a man who jumps the gun in any event. He is impatient with the response from the review board but is not the type to let it cloud his judgment of what is best in caring for my mom. I do have much faith in his abilities and believe him to be a brilliant doctor who has not forgotten that behind all the medicine and procedures is a person and her name is Bonnie Pine. We are truly blessed with a doctor who has both intelligence and compassion; these rarely reside equally in one person.

Tonight, before I fall asleep I will once again whisper to God asking him not to take my mom. I will admit that I am very much afraid of the dark and I will pray for the light.

Déjà vu...

Sunday evening finds us back at the scene of the crime. After a phone call from Dana informing me that my mom was vomiting all day and the last time looked like blood through it, we decided to take her to the emergency room at HUP. We managed to get her dressed warmly and loaded into the minivan but she began vomiting blood again 2 minutes into the journey. Dana and I decided that we were not going to be able to make the 45 minute drive to HUP and would have to settle for our local hospital where she had been misdiagnosed 3 times before being transferred to HUP originally.

We arrived to an overflowing emergency department at approximately 7:00 pm and I explained my mom’s condition to the woman at the admissions desk. I told her that we came in that evening because my mom was vomiting blood and having some difficulty breathing. She put a name band on my mom’s wrist and told us to have a seat. This was not the response I was hoping for but we stood off to the side against the wall while I reminded myself that other people were just as sick as my mom and were entitled to care. As we waited a man came in pushing his wife in a wheelchair, she was vomiting and having some sort of seizure. The man explained to the admissions clerk that his wife was having some sort of reaction to a medication she took, she was given a name band and the man parked her wheelchair near my mom. My mom began vomiting again and the admission clerk asked us if we could move her further down the hall where other patients wouldn’t see her, as Dan started to move my mom’s wheelchair further into a hallway alcove the triage nurse called a girl with a sprained ankle and started attending to her.

“I don’t think so.” I told the admission clerk. “My mother is vomiting and can’t breathe and you are taking a patient with a twisted ankle? I don’t think you understand, I need a doctor now before my mother dies in your waiting room!” I pointed to the woman with the drug reaction, she had begun twitching and vomiting again “This woman should already be with a doctor!” The clerk asked me to calm down, but she did get on the phone and within seconds a triage nurse came to speak to my mom and a doctor came through the emergency doors to retrieve the woman with the drug reaction. As the automatic door was closing on their retreating figures the husband turned to me and nodded, his eyes were wild and frightened. I know the feeling that goes with that expression and I pray to God that all went well for him. Maybe my reaction was wrong, I mean, I am not a doctor so what the hell do I know. Every action is on instinct and I just wait for my brain to catch up, sometimes my instinct is correct and other times my brain catches up to tell me what an ass I am.

We spent the remainder of our evening explaining that PML stood for progressive multifocal leukoencephalopathy to the ER doctors and nurses who finally put a call in to Dr Schuster to discuss the case with him. I figure they got all they could from Google and were scrambling. After an extensive conversation with Dr Schuster the ER attending came in to tell us that upon Dr Schuster’s request, my mom would be admitted to our local hospital and transferred back to HUP as soon as a bed became available. A bed was brought in for my stepfather and Dana and I settled into the chairs provided to wait for mom to be moved from the emergency department to the telemetry unit on the 2nd floor.

Eighteen hours later my mom was still in the emergency department, Dana and I had refused to let the doctors perform an endoscopy on Dr Schuster’s advice and this brought us a considerable amount of attitude from the staff at our local hospital. At first I was surprised, I figured they would want her transferred out of their hospital because they were so unsure of how to treat her, but then I came to realize that it is almost like those cop shows where the local authorities get ticked off when the FBI steps in, it’s all a matter of having your toes stepped on. My mom’s nurse even came to inform me that Dr Schuster’s opinion was not the word of God.

“How do you know? When was the last time you spoke to him?” I asked her
“Who—Dr Schuster?” she asked
“No,” I said “God. When was the last time you talked to God?” Being tired and scared puts my sarcasm level at an all time high, that nurse just paid the price of many sleepless nights and days full of worry. Once again, I am truly sorry if I offended her but sometimes you can’t shut your mouth fast enough to keep your foot out of it.

My mom was transferred to the telemetry unit of St Mary Medical Center late Monday afternoon. I actually had to Google the term to find out what a telemetry unit was so that Dana and I could stop referring to it as the “we have no idea what is wrong with you ward” of the hospital. It turns out that a hospital telemetry unit is a unit in a hospital where patients are under continuous electronic monitoring. Telemetry is the practice of sending electronic signals from one place to another; it allows hospital personnel to monitor heart rate, heart rhythm, breathing, and other things both by the patient's bed and at a remote location like a nursing station. I can see where this could be a useful tool for nurses to detect emergent medical issues before they become a problem, the only concern I have is that it takes a nurse at least 45 minutes to respond when my mom accidentally pulls of one of her heart monitor electrodes or when her IV line becomes occluded and the machine starts beeping.

The telemetry unit also means that your mom will be so full of ativan that she is totally unable to communicate with you until it wears off. After experiencing a day like this Dana and I decided that someone needed to be with her at all times and we had to inform the nursing staff that her intake of ativan should be limited. Rooms in the telemetry unit are not private which means Dan is unable to stay with my mom through the night as he has been since the onset of the disease. His absence causes my mom undue stress so Dan has taken to sleeping on the window ledge behind the curtains of my mom’s window, if he is discovered before morning he relents to the nurse and moves himself to the family waiting room down the hall with strict orders for the nurse to call him if my mom becomes agitated during the night. The overnight nurse is very nice and agrees to call Dan if anything occurs but her daytime nurse is another story, Dan has started referring to her as Nurse Ratchett. The patient in the next bed simply calls her lazy. My mom is developing a bad cough and you can hear the mucus in her chest. We were told on Monday that medication was ordered to dry some of that up, but she is yet to receive it.

The wait for a bed at HUP seems to stretch on for an eternity, as of Wednesday we are still watching the clock. We have received news from Dr Schuster that my mom’s tests have come back with the results we needed and the hospital review board should have their approval in by the end of the week. Hope springs eternal…

Welcome to ER number 3...

Saturday morning started off with cold rains and strong winds and meant that something would go wrong for sure; it’s always the cold, rainy days that require you to leave your warm comfy home.

My mom had spent most of the night telling my stepfather that she was going to die before her doctor ever started his experimental therapy and that nightmarish thought carried into her morning too. Dana called me late in the morning and told me that my mom was upset and wanted to return to the hospital because she believed she was dying. I started getting myself ready to go and talk to my mom when the next call came through. An ambulance had been called because my mom had had some difficulty breathing. Everyone was called and we girls met up again in another emergency room while Dan rode with my mom in the ambulance. Upon arrival at the emergency department Dan informed me that during the ambulance ride the paramedic’s knee gave out and he fell across my mom’s chest. Later a bruise could be seen down the left side of her chest and she complained of soreness in the area, just another minor setback.

The sign on the front door of the emergency department says “We Care About Your Health.” Aria Health Systems of Bucks County cares so much about your health that they ask for your driver’s license and insurance card before the ever ask you what brought you to the emergency department. The ER doctor at least knew what PML was so I can’t complain too much, but she did ask me several times if I was sure I wanted my mom to be resuscitated if it came to that. I do understand the outcome for PML patients is not promising, but I believe I should have everything possible done to keep my mother alive until she can receive treatment. We can revisit this issue after that depending on the success of the T cell therapy.

My mom’s airway was cleared and she checked out okay on a chest x-ray and EKG so after receiving a bag of IV fluids we were okay to take her home. I ran out through the pouring rain to start my car and get it warm enough for my mom. As I sat there with the heat blasting and listening to the rain my sister Kelly came out the double doors of the hospital and ran to the car and flung herself into my passenger seat. Before I had the chance to ask her what was wrong she whipped a hospital bed pan out of her coat. “This one is contoured better and is more comfortable than the one we have at home,” she said smiling. Now, I know you what you are all thinking, we could have just asked for that bedpan, right? In all honesty, they probably would have just given us one, but they could have said no and we just can’t take risks like that! I smiled at Kelly, threw the bed pan into the back seat and pulled the car around to the ambulance pick up to wait for my mom to be brought out.

The doctor explained that my mom’s numbers looked good and that she was not really all that dehydrated so I figure we aren’t doing as bad a job as we thought. However, the event did teach me that regardless of the outcome of my mom’s condition the emotional scars will be permanent for Dana, Kelly, Chris and I. As we left the ER the attending physician gave us her condolences and said “It is what it is, right?”

“Not quite, jackass. We still hope, because we call her mom.”

The level of frustration that comes with a life limiting illness is amazing. I feel as if my entire life is on hold just waiting for the next episode or event that takes me to the edge of my sanity. I want to lash out at someone, hurt them and make them feel this helpless and lost. Not a single moment goes by where I don’t worry about the regret that will come if I choose to spend my day wrong and “what if” is the beginning of every thought—what if I go to work and something happens, what if I spend time with the kids and something happens, what if I actually have a conversation with my husband and something happens, what if I sit with my mom and something happens, what if I make sure my sisters are dealing and something happens. Some days I feel like I just can’t be bothered with other peoples’ feelings and it takes so much effort to pull myself out of that place where misery reigns supreme. There are just too many sharp turns, jarring stops, and dark tunnels on this roller coaster and I just want to get off back there at “happily ever after.” Of course, beyond all there is always hope, just like when Pandora opened her box, unleashing terrible horrors on mankind, she managed to close the box before hopelessness was released. So, that is basically where we are today, holding down the lid on hopelessness.

Tomorrow will be our first visit from the home care nurse and then Monday is my mom’s appointment with Dr Schuster to discuss our game plan. Let’s play ball!

Homeward bound...

After some serious discussion we decided that once my mom was again released from HUP we would take her home rather than try another rehabilitation facility. We visited the physical therapy center at HUP so that they could teach us a few things about how to care for my mom. We spent the afternoon practicing lifting her from the bed to the wheelchair and back. After a bit my mom told us she was done and I explained to her that we needed to be able to do these things before she would be allowed to go home. In turn, she told me she hated my guts and didn’t want to see me anymore. I understand her words come from fear and frustration and that she doesn’t really mean them, but they are a sucker punch all the same. I left the physical therapy wing to regain my composure and Dana told me later that things didn’t get much better. The physical therapist asked my mom to let them assist her in walking and she told them she wanted Dana.

“Do you want me to help you walk?” Dana asked her.

“No, why don’t you go walk.” My mom told her and went on to inform each of them that they were stupid and that she would not be walking that day.

Physical therapists are rarely deterred so they decided it would be a good time for Dan to practice sitting my mom upright. They proceeded to show him where to hold my mom as he moved her and reminded him to not lift with his back. Dan decided he had a better method and proceeded to climb onto my mom’s gurney and straddle my mom’s legs. “What if I did it this way?” he asked as he started to pull my mom’s upper body toward him in a bear hug. My mom managed an eye roll and told him to get the hell off of her while Dana and Chris started laughing hysterically. I have to give Dan credit; he is most likely one of few people to shock a physical therapist. “No, don’t ever do that.” the physical therapist told him. The stunned look on his face didn’t leave throughout the entire wait for transport to come and bring my mom back to her room.

Another night at the hospital and a clear chest x-ray brought us to discharge papers on Thursday afternoon. The moment Dana walked into the hospital room my mom was asking where her sneakers were. Dana managed to stall her long enough to get her prescriptions filled at the hospital pharmacy and have a wheelchair brought around. There were a few tense moments when Dana realized she had lost her car keys somewhere in the hospital and had to have Dan walk my mom to the car at a snail’s pace while she and my Aunt Deb ran wild through the halls until security called to let them know the keys had been turned in.

I am not sure if my mom was worried that the doctors would change their mind and make her go back or if she was just anxious to be on her way home after the long hospital stay. Whatever the reason, my mom kept telling everyone to hurry as they loaded her into Dana’s truck and Dan returned the wheelchair. During the entire “loading” process Dan repeatedly asked my mom if she was okay and she repeatedly told him yes and demanded he get in the truck. After being asked if she was okay for the millionth time my mom started screaming at the top of her voice. My Aunt Deb swung around to see what was wrong while Dan jumped into the truck to assist with whatever the problem may be. A smile played on Dana’s lips as her eyes met my mom’s in the rearview mirror. “That got him moving, didn’t it?” she said and Dana’s smile broke into laughter. It makes me feel good to realize how well we actually know our mom, some children miss the opportunity to really see their mother and know her personality quirks. Dana got the joke before anyone even realized that is was a joke, now that’s love.

The ride home was a bit horrible for all involved. My mom cried out in pain most of the trip and the sound was agonizing for everyone. Her back was causing her horrible pain most likely from not sitting so straight in weeks and soreness from lumbar punctures, I am sure the bumper to bumper traffic leaving the city wasn’t much help either. They made it home safe and sound and then the fun really began—furniture was moved to accommodate a new hospital bed, a wheelchair and a portable toilet. The hospital bed was too hard and an emergency run was made to Target for a foam topper and dog food, we were out! Sheets were washed, pillows were covered, the bed was made, waterproof pads were stored, medicines were separated and liquids were thickened to “nectar consistency.

My sister Kelly purchased food from the Olive Garden to celebrate my mom’s “homecoming.” I guess to most people looking in on the situation it doesn’t seem like much to celebrate but when you are faced with an illness like PML you learn to find the joy where you wouldn’t have bothered to look before.

That first night was rough and left all of us believing we had made the wrong choice, but we managed to get my mom settled and moved on from there. It took atavan and Percocet to get her settled but that’s not really cheating, is it? Situations like this are scary because you learn as you go and they are filled with the unknown. We are not sure how to give my mom what she needs and we do a lot of guessing and she calls us stupid when we guess wrong. It’s almost like charades meets a very harsh episode of the Gong Show. We all just keep waiting for that big hook to come out and pull us off stage.

Meals for my mom are a problem, she has difficulty sitting because of the back pain and we can’t let her recline too much because of the swallow difficulties. On Friday we tried a roast beef sandwich from Arby’s chopped as small as possible, as we fidgeted around trying to get everything in place to help my mom eat she decided she could wait no more and started grabbing roast beef off the plate and tossing it into her mouth. The fear of her choking left us all standing there like idiots yelling “Chew that, chew that!”

We are managing and hoping…

Good Shepherd...Holy Hell!

Our entire family was so thrilled to find out that my mom was well enough to be transferred to a rehabilitation center while her doctor filed the petition with the hospital review board to allow him to treat my mom with an “experimental” T cell therapy. We honestly believed that this would be a great step forward but it was definitely more along the lines of 2 steps back…

Perhaps it was just coincidence that gave us Dr Stephen Schuster but at this point in my life I am not embarrassed to say that I believe it was fate, divine intervention, call it what you like but this is the man who told my mother he will give her her life back and he is the kind of man you believe in. Because my mom’s presentation of PML is so extremely rare it is not uncommon to find medical professionals who either do not know of the disease or have never witnessed it before, but Dr Schuster has been my mom’s oncologist for almost 10 years and is the only physician to have treated a patient for PML caused by JCV in a patient who was not immune compromised and have that patient not only live but gradually return to the condition they were in before the onset of PML. The T cell therapy he would like to perform consists of removing my mom’s own T cells and stimulating them in a laboratory environment causing them to replicate and then inject them back into her system thus raising the amount of T cells my mom has available to fight the virus. The treatment is considered experimental because it has only been used for1 patient and therefore requires review from the hospital board before her physician can proceed. Dr Schuster is confident the treatment will be approved and has asked for the process to be expedited so we will most likely have an answer in the next week or so. The chances of finding a doctor to do this are a long shot, finding out he has been your doctor all along, before you ever heard of the disease is one in a million, but then so is my mom.

When I arrived at my mom’s hospital room the day of the transfer I found her very upset and agitated about being moved to the rehabilitation center. She kept asking me to take her home and to not let them send her to the Good Shepherd Rehabilitation Center where a room had been arranged for her. She told me that if we brought her there it would be to die. I spent the entire time with her reassuring her that the week of physical therapy would give her the strength she needed for the treatment and would get her one step closer to coming home. Transport was arranged for 3pm and I watched as the nurses at HUP said their good-byes and wished my mom all the best. Dan was by her side so that he could ride with her in the ambulance to Good Shepherd, my mom cried as they moved down the hall. Although many of my mom’s motor skills are deteriorating rapidly her mental acuity has not been affected. I was concerned that she was starting to lose some of her mental functions and that was the reason for the hysteria, as I look back on the entire episode now I realize that my mom’s mind is fine and in her heart she knew more than I.

We were greeted in the lobby of the fourth floor at Good Shepherd by the administration clerk, Cynthia. She had us sign the necessary paperwork while the nurses and physical therapist assessed my mom. The facility is set up beautifully and boasts acute care for medically complex patients and I have to admit that I was impressed with the set up. I spoke to the nurses and they seemed extremely friendly and well-equipped to deal with my mom’s condition. This experience taught me that the phrase “things aren’t always what they seem” was spoken by a very wise person.

My mom was settled in by 4pm and we asked the nurses if she could get her medication for nausea as she was feeling a bit sick and was extremely agitated. We were told that they would confirm her dosage on her discharge papers from HUP and they would get her medications. At 5pm her dinner tray came but my mom wasn’t feeling well enough to eat so we asked again for her medication and were again told that they were reviewing her discharge paperwork. At 6:30 the first episode of vomiting started and my sister Kelly went out to the nursing station to let them know she was vomiting so that they could tend to her. The nurses stared at her for a few minutes and then her nurse finally got up and came into the room to stand by her door and watch as we cleaned up my mom and stripped and cleaned the bed. He did point my sister Chris in the right direction for clean linens so I guess we should be glad for that much. By 7pm we had my mom cleaned up but had still not received any of her medications and we were starting to realize that no matter how far down we put the thermostat in her room it just stayed around 84 degrees.

At 8:30pm I went out to speak to the nurse at the station and asked her about my mother’s medication. She explained to me that the doctor was on another floor and that she would be up soon to address my mom’s paperwork and get her medications. I tried to explain to her that vomiting is a part of my mom’s condition and that it would continue if she did not have her medication on time. She explained to me that she was an RN and had a medical background that I did not and that she was well aware of my mom’s condition. I am sure that nurses have a tough job and that they deal with patients and their family trying to tell them how to do that job on a regular basis and after watching them come and go during my mom’s 3 weeks of hospital stays I was able to recognize her condescending little speech for what it was, a way to put me in my place. During this time I have also learned that I am my mother’s advocate and it is my responsibility to speak for her when she cannot do it for herself. With that in mind I asked the nurse if she had ever cared for a patient with PML and when she answered “No, but…” I cut her off and asked if she knew what PML was and how it worked and when she again answered in the negative I took the opportunity to put her in her place and said that I would explain it as best I could considering my lack of a medical background. I went on to discuss PML and the rapid deterioration it caused. I told her how my mom’s condition was 10 times worse on that day than it had been just 3 days previous and how she was losing her ability to move her own body and that no amount of physical therapy would give her those abilities back if they couldn’t stop the virus from attacking her brain. I went on to inform her that she may have thought that she was going to sit behind her little desk with her RN name badge and totally ignore the patient in room 4046 but that she had thought wrong. She stood and told me she would go and find the doctor and bring her to my mom’s room. I figured we understood each other, but I guess Dana was right when she said “sometimes you just can’t fix stupid.”

By 9:30 visiting hours had been over for 30 minutes and all 7 of us stood around my mom’s bed fanning her as she pulled at the hospital gown ripping it off and thrashed about complaining of the heat. The temperature in the room had climbed closer to 90 degrees, my mom’s dinner tray sat on the table untouched, she still had not received her medication and there was not a single nurse to be found. My mom told us she thought she was going to be sick again, the vomiting started a few minutes after that and was the beginning of some of the worst images we have seen since the onset of this disease.

I instantly pressed the nurses call button on the side of the bed as I reached for the basin someone handed me to catch the vomit, my sister Chris searched the immediate closets until she found clean towels and linens, Dan and Deb stood on the opposite side of the bed reassuring my mom that she was okay and Dana, Kelly and Helen began stripping soiled sheets from the bed. I pushed the call button again, the vomiting continued and I looked away from my mom and out to the hall and yelled that I needed a nurse and realized as I was turning my head back to her that my mom was too quiet. I looked into her flushed face and her eyes were wide and scared, they darted wildly around the room. It clicked in my brain right away and I said “Mom are you alright, are you choking” as I pulled her further forward. At that moment her eyes locked onto mine and the fear I saw there was clear and I know it is an image I will see in my worst nightmares for many years to come. I know in those moments I did everything wrong but luckily as I pulled her forward her body started to convulse and vomit and mucus came pouring out of her mouth. The intensity of the moment passed slightly but the feeling of urgency didn’t leave and I screamed again for a nurse and again no one came. My mom lay back against the pillows, weak and drained and Dan stood at her side smoothing her hair from her soaked brow. We left Dan and Deb there with my mom as the rest of us ran into the hallways screaming for a nurse, my sister Kelly found a nurse’s assistant and yelled to him that our mom was choking on her own vomit and when he didn’t acknowledge her or show any signs of rushing to our aid Kelly told him she would call 911 to get my mom the help she needed and he told her to “Do what you gotta do” and he moved behind the nursing station desk and sat down. My sister Chris found a nurse further down the hall on the phone and yelled to her that my mom needed help immediately and turned to run back to my mom’s room. As the nurse showed no sign of moving my cousin Helen started yelling “What the fuck are you still doing on the phone?!” Finally, a nurse came from another patient’s room and asked us what was going on; she rushed to my mom as we explained the situation. 20 minutes had gone passed.

After my mom was cleaned and calm the head nurse of the facility came up to offer us a fan to beat the heat in the room (the patient in the next room informed us that the system was broke and it had been that way for over a week by that time) and asked us if everything was okay. My cousin Helen spoke before any of us could regroup enough to answer. “She didn’t even get to eat her fucking dinner! Do you think that is okay? This is bullshit, she was choking on her own vomit!” We all stood in stunned silence after the outburst. Helen is shy and quiet, she gets nervous about the language barrier when she orders Chinese food for goodness sake, but she loves my mom more than anything and she couldn’t keep quiet. Later, she would apologize to each of us explaining that it wasn’t her place to say anything but she was just so upset. Helen is supposed to move upstate soon closer to her brother and his family but my sisters and I realize that my mom and Helen are not just cousins but best friends and with all that we are going through we can’t let her go. We love Helen and need her here with us as much as our mom does. After Helen’s outburst I believe it was Dana that informed the head nurse that she could “shove the fan up her ass and blow her brains out” for all we cared, we wanted transport set up to move my mom back to HUP so that we could have a chest x-ray done to rule out aspiration pneumonia.

11:30pm found us in an exam room in the HUP emergency department. A chest x-ray was done and looked good but doctors wanted to re-admit her as they were still concerned because aspiration pneumonia has a lag time and may not be spotted immediately. By this time my mom was bordering on hysteria and it took repeated doses of atavan, benedryl and finally morphine to bring her down enough to sleep. There are only allowed to be 2 visitors by a patient’s bedside in HUP’s emergency department but we were lucky to get a wonderful nurse named Jeanine who allowed us all to be there. As we received word that my mom was being admitted back to Rhoads as soon as a bed became available Kelly, Chris and Helen headed home to take care of things and Dana, Dan, Deb and I stole a few blankets and made our beds on the emergency room floor around my mom’s gurney to wait for a bed to become available. It was 2:30am.

An hour later Jeanine woke us to let us know that a room was available in the transition unit (kind of an extended emergency) and my mom would be there until a bed was available in Rhoads. We filled out the necessary paperwork and left my mom sound asleep in their care and went home to get a few hours rest of our own. It was 6:15am.

We got back to my mom’s room in the transition unit a little before noon to find her extremely upset and crying hysterically. When she saw me she kept saying “Jodey, I was calling you and calling you and you never heard me.” The guilt of not being there sooner is difficult to swallow some days but I carry it with me nonetheless. My mom was disoriented and believed that we had left her in the room at Good Shepherd. Once we made her realize that we were again in HUP she relaxed enough to be evaluated by the speech and swallow specialist so that they could release her to eat. She received thickened juice, applesauce and a graham cracker which she ate before demanding that we take her home. Dana told her she would take her home but I was afraid and said that we should think about it first. My mom was angry with that and told me she hated my guts and didn’t want me there anymore. I left the room so I didn’t upset her anymore and went to the cafeteria to deal with my own emotions. I know she didn’t mean it but it is a sucker punch all the same. I love my mom dearly and only want the very best for her, sometimes I just don’t know what that is and in those moments I am relieved to have 3 wonderful sisters to share my worry. We talked it through and voted on it. Of course the choice of sending her back to Good Shepherd received a unanimous response, “Can I get a hell no?!”

Elvis has left the building...

The weekend has been long and rough. Dana and I spent the majority of our time by the side of my mom’s hospital bed. Her emotions are raw and she cries to go home most of the day. Saturday was quite horrifying in this respect. She cried to go home while she pulled bandaging from her hand where they had recently drawn more blood. I understand the reasoning behind all these blood draws but it doesn’t make it easier when I look at my mom’s frail hand. It is completely black and blue from her wrist to her fingertips and it turns my stomach each time I see it. I pray each day that the doctors and nurses continue to realize that she is not just a number in a clinical trial. This is the woman who gave me strength and taught me determination, who showed me that a little common sense can go a long way and that life’s most difficult moments should always be handled with honesty, integrity and a little bit of pride, this is my mom. She has always made sacrifices for me in the past and will continue to do so in my future, I’m sorry God, she is just not yours for the taking right now.

Some days it feels like the only way our family is able to function is by being dysfunctional. As things become more difficult and a great deal more serious our sense of humor seems to step up a notch and become a bit more twisted and I guess some would say they were in bad taste, but this is how we survive the unimaginable. Dana and I arrived at the hospital early Sunday morning , we actually beat my mom’s breakfast tray and were glad we had come bearing danish. After she devoured a lemon-filled pastry she informed us that she had had a “spill” that morning and proceeded to tell us the story. My mom’s one bit of dignity throughout this entire illness has been that she has continued to use the bathroom, although most days she needed my stepfather’s assistance it was better than a bed pan. In the very early hours of Sunday morning my mom’s nurse managed to convince her to use the portable toilet kept in her room and she and my stepfather helped her to it. As my stepfather stepped away to get toilet tissue the nurse did not keep a hand on my mom’s shoulder and she leaned to far forward and fell. She hit her face on the hospital floor and then came down on her knees as well. Of course, the doctors were called in to assess and have decided that no harm was done but they have also decided it is too dangerous for my mom to leave her bed and she is forced to resort to the bed pan. My mom insists that she is fine and told me that her doctors are severely lacking in the sense of humor department. She informed me that the fall was not a big deal and it was simply her attempt at an “Elvis Presley impersonation.” I let her know that Dana and I got the joke and that she was a damn good impressionist but doctors just don’t seem to have that “Death by Commode” humor thing going for them.

The nurse assisting when my mom fell came in to explain to us how to help mom use the bed pan and explained to us that it would be safer and easier on my mom and all of us. Dana laughed, “It may be safer, but she is sure as hell not going to make it easy for you.” I know my mom well enough to agree with Dana and besides none of us are looking for the easy way out, just the happy dance at the end of this fucked up roller coaster ride. Dana and I left around noon when Chris arrived as the second shift visitor. We received the update phone call a few hours later telling us that the nurses had to set up a catheter as my mom had a full bladder and refused to use the bed pan. I am not sure if her condition has deteriorated to the point of her not realizing she has to use the bathroom or if she is stubbornly holding to her bluff because it is her only bit of control. I am leaning toward the latter and thus have added the Rhoads nursing staff to my prayer list.

All aboard...NOT!

Dana and I decided to catch the 4:55pm train from Woodbourne Station for a visit with my mom after work. The train didn’t actually arrive at the station until 5:30pm and we should have heeded the warning but instead we boarded and purchased our tickets to University City Station from the conductor. The train moved slower than usual and sometimes stopped completely on the tracks, about 5 stops into the journey the announcement was made that our train would not continue to the airport but would make the 30th Street Station its final stop. Dana and I looked at each other in annoyance, 30th Street is the stop right before University City, we could walk to the hospital from there but we had left our heavier coats in our cars so that we didn’t have to carry them on the train. Upon arrival at 30th Street we asked at the Passenger Services desk for the next train to University City and were told one was arriving late on Track 6 and we could still make it. We ran to Track 6 as the train pulled in and asked the conductor if they were stopping at UC and grabbed a seat when she said yes, by this time it was 6:45 and fairly dark outside.

Lesson number one: Don’t believe a Septa conductor. The train skipped the UC stop and Dana and I were forced to go along for the ride.

Lesson number two: Don’t ever get off at the Darby Station.

Dana and I arrived at the Darby Station at 7:00pm and explained to the conductor that they had skipped our stop. She apologized and explained to us that we needed to go to the other side of the tracks to get the next Northbound train back to UC and then the train was gone. Dana and I looked around and realized that this was surely not an ideal situation. In order to get to the other side of the tracks to catch a Northbound train we had to climb 100 steps up to street level (I’m exaggerating, there were only 98 steps) go across the highway and down the steps on the other side. We would have just cut across the tracks and saved the steps but a beat up chain link fence separates the two sets of tracks.

As we approached the tiny cubicle shelter to wait for the next train we realized there wasn’t a single person around. It was extremely dark and cold, half the street lights were broken out and the terminal shelter smelled suspiciously of urine. I used my cell phone to call my sister Chris and had her find out when the next train came to Darby. Our conversation went along the lines of “Hello Chris, its cold, dark, not a good neighborhood and I am freaking out. Please find the next train.” Chris called back a few minutes later to tell us that the next train would come through at 7:24pm. Wonderful!—It was 7:16pm by then so we would most likely not die of hypothermia before the next train! As we were waiting we listened to the sounds in the distance; people fighting, bottles breaking, rap music and police sirens.

7:19pm: A person started making their way down the steps to the platform and I asked Dana if it was a man or a woman. She said she couldn’t tell but if it were a man he looked pretty small and she was sure we could take him. It turned out to be a girl of about 20 and Dana said it couldn’t be such a bad area if this young girl felt safe coming to catch the train alone (my sister, forever the optimist). I was thinking the girl was most likely a prostitute judging from the way she was dressed—welcome to the world of suburban mentality, Jodey! Please forgive me.

The train headlights could be seen approaching the station at 7:24pm on the dot and the relief was immense as we stepped away from the cold terminal shelter that smelled more like an outhouse and boarded a nice, warm passenger car. I asked if the train would be stopping at UC and didn’t really care what the conductor said because I would be damned if I was getting back off!

We arrived at the hospital by 8:00pm to allow my sister Kelly and cousin Helen to finally leave for the night. Kelly let us know that my mom had been agitated most of the day and had not eaten lunch or dinner; she seemed to calm down when Dana and I arrived. I think she was exhausted by that time, I know Dana and I were! We talked with my mom for an hour, she cried for a few minutes about all the blood they kept taking but we were able to calm her down and she finally fell deep asleep by 9:15pm. Dana and I left our number with the nurse with instructions to call if my mom had a rough night and then made a run for the 9:38pm train back to Woodbourne.

The train was on time and we boarded, purchased our tickets and settled in for the hour long journey home. We discussed my mom’s condition and focused on some of her improvements now that the doctors had stopped the sedatives. We reveled in the fact that she was smiling and alert during most of our conversations before she finally drifted off to sleep. The conductor announced the Neshaminy Falls station and we watched some passengers disembark before the train started moving again. A few feet after the station the train slowed and inched back to the station and stopped. Now what?!

We stood for 10 minutes and the train started to the Langhorne Station where we were greeted by dozens of police lights cutting through the darkness. The train was forced to stop 5 feet from the platform due to the fact that some drunken fool had decided to drive his car on the tracks. Police chased after him on foot and finally got the vehicle stopped but the problem now was getting the little car off the track. Dana and I sat there thinking “This can’t be happening” as we watched the tow truck arrive. We discussed getting something to eat while the tow truck driver hooked up the car and decided the diner would be our best choice as he pulled the car from the tracks.

We made it to the diner around 11:30 and received the welcome you can only get from a diner waitress, “You wanna sit down?” We were seated in a booth on the far side of the diner and ordered two cheese steak deluxe plates and drained our water glasses while we waited for our order. The “happy” waitress seated a family in the booth across from us and we sat in silence while they placed their orders. We should have known what we were in for when one of the daughters ordered low-fat chocolate milk but our dork-family alert was a little off.

Our cheese steaks arrived a few minutes later, they were a little light on the “deluxe” but the fries were hot, crispy and piled high so it made up for the fact that the sandwiches looked like they split one wafer thin minute steak between two rolls. We ate in silence and listened to the conversation of our neighbors. The daughters were in their early twenties and mostly talked to their parents about the college experience until dad pulled out his I Phone and things went from bad to worse. He had actually scanned in his daughters art work from when they were in elementary school and the family went through each picture admiring the show of artwork. Now, I know you are all thinking how sweet that is and maybe I am just a cold-hearted bitch looking for the front row seat in hell but I have to say it, “Who fucking does that?!”

I got home well after midnight, agreeing wholeheartedly with Dana when she said we would be driving the next day!

I Can Ride Like the Wind Blows...

To really see the humor in this story you have to know my stepfather. Dan is not a big guy and he always seems to take offense when you point it out. Keep that little tidbit in mind as our story unfolds…

Dana and I went back to work Monday morning and dropped Dan off at the train station so that he could catch the 6:15 am train back to the hospital after spending his first night at home since my mom was admitted to HUP. We were running a bit late and Dan had to make a run for the departing train carrying his overnight bag.

Later on that day, Dana and I walked into my mom’s room to find her asleep and Dan perched in the armchair by her bed watching CNN on the tiny TV that was costing us $8 a day. He smiled when he saw us and said “Boy, that was a close one this morning, wasn’t it?” We agreed and started to talk about the train ride. Dan never goes anywhere without making a new friend, he’ll talk to just about anyone. Dana and I knew that he would have a story for us, and he certainly didn’t let us down.

“Some woman on the train this morning asked me if I was a jockey, do you think it was because I was carrying a duffel bag?” Dan asked, looking perplexed. Dana laughed and made a squishing gesture with her hands and said “No, it’s ‘cuz you small” I agreed with Dana as I started to laugh and we went on to tell Dan about how jockey’s are always little, short guys and that is most likely why the woman made the comparison.

“Hey, she was makin’ fun of me!” Dan said, clearly indignant now

“She figured you could ride like the wind blows.” I said and this got Dana laughing harder. I in turn started laughing and then the stupid cold I have took over and I ended up with a horrible barking cough in the middle of my laughter. Dan was clearly annoyed by this time and made some excuse for having to leave the room although we knew he just wanted to escape our braying laughter.

As he cleared the doorway into the hall I saw my mom’s head peek up over the bed rail, her face bright with laughter, “Definitely a burr under his saddle”

The laughter went on…

HUP pups...

Dana and Chris brought my mom’s yellow lab 1-year old pups, Woodrow and Wilson, to the hospital for a visit. The boys had to wait in the parking garage while Chris brought my mom down in a wheelchair. As she wheeled by with my mom all the nurses were smiling and asking if the puppies were here for their visit, mom had told everyone. Dana said later she wasn’t sure who was more excited, mom or the dogs and Chris said she turned her back to my mom’s bed to put the brakes on the wheelchair and my mom grabbed onto her and pulled herself out of bed!
As soon as the boys saw her the “wiggle worm” dance commenced, they wagged their entire bodies not just tails. They licked her face and hand and danced around her, they missed her. My mom smiled and all was right with the world for those moments.

After my mom returned to her room the nausea took over and she spent the next 30 minutes vomiting. She said it was worth it and I believe she meant it. For us, it was a harsh, painful reminder of her illness and a warning of the fight we have on our hands. It is a tough reality to live with but the only other option would be to quit and we just aren’t built that way.

How we roll...

I went to the hospital to see my mom today with my sisters, Dana and Chris. As we passed through the glass corridor to my mom’s building we saw a man fall to the sidewalk, having a seizure. People looked at him but kept walking and even the man he was talking to actually stepped away from him and acted as if he didn’t notice him. In those moments I became numbly aware of everything around me, the people starting to stop in the hall, the color of the man’s sneakers, and the blue scrubs of the HUP nurse who finally noticed the man and flagged down a passing ambulance for assistance. As the events unfolded Chris banged on the glass of the corridor and yelled “Isn’t somebody going to do something? What is wrong with people?” As they loaded the injured man onto a gurney Dana turned and said “Lucky for him it happened in front of the hospital.” This event made me realize how differently my sisters and I react in difficult moments.

Dana sees the positive in any situation. She hears what the doctors’ say about my mom’s illness and of the 50 horrible consequences she holds on to the one positive outcome and carries it with her always. Her hope and faith are unwavering and I truly envy her and need her with me.

Chris, on the other hand, lashes out and gets angry. She doesn’t really mean it but everyone knows how to express anger, it’s an easy emotion. Worry is something different altogether, there is no release for worry, it just stays with you and eats at you until you turn it to something else. I like Chris’s anger; it makes me think and keeps me from quitting.

My sister Kelly is always strong, quick and efficient; she gets things done and has no time for the grey area. Her emotions are quickly felt and filed away where they belong before she moves to the next problem at hand. I find her rather amazing in her abilities and am so relieved when I see her come through my mom’s hospital door.

I am the one who puts myself in an emotional shut down while things are happening. I process events and pull out the information I need to make decisions and then save the emotional impact for late at night when I lay in bed and torture myself with the images of the day. Each night before my brain collapses from the exhaustion I whisper into the darkness, “Please God, don’t take my mom.”