January 5th, 2024 I finally got all my bloodwork, x-rays and MRI’s done.  All that was left was my bone marrow biopsy on January 9th.  Surely there was a light at the end of this tunnel.  I just had to get through the dreaded weekend ahead.  See my blog entry from Part 2 for more backstory.

My bone pain was so intense I couldn’t sit on any hard surface including a toilet. I had to order a cushy toilet seat on Amazon and had my wife install it.   After a day with the cushy toilet seat, I realized that wasn’t enough cushion for my sensitive bones.  I ordered another toilet seat cushion to put on top of the seat I just bought.  Nothing was giving me any relief. Walking was getting very difficult and somewhere in this timeline I pulled the towel bar out of the wall while trying to brace myself in the bathroom.

Saturday, January 6th I did not get out of bed at all.  I couldn’t move.  My wife sat by my bedside and said, “I have to take you somewhere today.  I can’t care for you anymore.  This is serious and I’m afraid that by tomorrow I won’t be able to get you out of bed to take you anywhere.”  

My breath was putrid.  My son came into my room to talk to me and he backed away from me as if I was the most terrifying creature he’d ever seen.  It was my breath making our bedroom smell like death. My mouth was incredibly dry.  I couldn’t drink enough water because I couldn’t swallow properly.  It was difficult to swallow my saliva. The symptoms piled on. My right foot was now numb as was my pelvic area and the pain in my calves was becoming unbearable even when I was laying down, just like my back, neck and jaw.  

Early that evening, my wife came into our room with a plan.  She wanted to take me to the local ER and get me admitted to the hospital.  She knew I couldn’t survive a long car ride to the bigger city hospitals.   I was now at the point where I wasn’t mobile and could barely eat, surely this was serious enough to get me admitted.  My mother-in-law arrived at our house ready to stay as long as needed to take care of our son.  My wife packed a suitcase full of things I would need if/when I got admitted.  She packed snacks and food for herself and made 2 big smoothies for me so that I had something to eat while in the hospital.  We were ready to go.  Her game plan was to sleep as much as possible Saturday night and head to the ER around 5am.  She wanted the best chance of not hitting any traffic on the roads or in the ER.  She knew I wouldn’t be able to sit in a waiting room. 

My wife ‘slept’ next to me Saturday night because she was so afraid to leave me alone.  I was choking on my own saliva and coughing.  My tongue wasn’t functioning either.  She said laying next to me was terrifying because she could hear me choking, gagging, gasping and the smell my putrid breath kept her awake.  We barely made it to 1am.  Neither of us were sleeping and I could not take another minute of the agony.  “I think we need to go now,” I said. 

She had already packed the car earlier.  All she needed to do was load up the cooler with our food and help me get into the car.  Another ‘longest car ride of my life.’  

Sunday, January 7th, 2:00am we arrived at the local ER.  My wife got me in a wheelchair and took me to the check-in desk.  Not one other person was in the waiting room and  I was wheeled back immediately.  

Within minutes they took my vitals and drew blood.  I barely remember all that transpired while in the ER since I was so tired from weeks of not sleeping.  The ER doc wanted to admit me right away and used the first alarming blood test that came back–severe dehydration– as his reason for admittance.  I was hooked up to IV fluids and IV steroids. Within 30 minutes, I felt almost normal again. I finally slept. My wife stayed up all night.  She was speaking for me and making sure the doctor knew my entire story. I had to wait for quite some time to get a room in the hospital, but when I did my wife and I were finally able to breathe. I was feeling better from the steroids.

This was a small hospital so there weren’t many specialists on call.  There was very little action and a lot of waiting.  They took a lot of blood samples and started to rule out many things.  I was given a room on the floor with all the Covid and flu patients (not a good place for someone with cancer).  I was put on “Meningitis Watch,” and anyone entering my room had to be in full hazmat suits. The good news was that my bone marrow biopsy was moved to Monday, January 8th since they wanted spinal fluid to test for meningitis.  I spent Sunday in my room gagging on phlegm and begging for drugs while my wife explained my symptoms to person after person after person who came into my room.  

I was seen by infectious disease, oncology and neurology.  No one knew anything about me when walking in the room and it was clear they did not read my chart.  No one seemed to be worried.  And no one seemed to be in charge of my care, and they had no idea what was wrong with me.  They all put in orders for many different tests, but everything was moving at what felt like a snail’s pace.  My wife finally went home late Sunday night to get some sleep.  I managed to get a little myself.  

Monday morning my wife was back at my side talking for me.  The hospitalist came into my room to talk.  This was the first time I was seeing him and he too had no idea of my situation.  My wife quickly explained things and he stood there and nodded.  He was in and out of my room very quickly.  I was off to get my lumbar puncture to check for meningitis and to have my bone marrow biopsy done at the same time.  That was a very unpleasant experience to say the least. I was not ‘in the best hands.’

Monday afternoon was again spent begging for drugs.  The steroids had worn off and I was in pain again. To add to the problems, now I was having a hard time swallowing pills.  My wife had brought more smoothies for me, but I was unable to drink them due to being very thick.  I was barely eating anything.  What would I do if I couldn’t swallow my pain meds?  I was visited by a speech pathologist who gave me an examination.  She had me stick out my tongue, move it around, suck from a straw and swallow.  Her advice was to drink smoothies that were really thin and break all pills in half.  My wife watched closely and took more mental notes.  “What will happen if he can no longer drink a smoothie?”  The speech therapist said the next step would be a feeding tube if it got to be that bad.  Still, no one had any clue what was happening.

I was also visited by the infectious disease doc on Monday.  She seemed to be the only person interested in my situation.  She told me that some of my bloodwork was coming back and everything was negative so far, but the 24 hour antibiotic drip would remain until all of the outstanding tests were back.  The meningitis test would take another day for results and the sepsis tests take several days for results.  My wife was getting inpatient,  “He doesn’t have meningitis.  He would be dead already. He’s been sick for 6 weeks now and meningitis kills you in two days.  He needs more steroids. Steroids will help with his pain until you have a better option.”  The doc disagreed and said sometimes steroids can make certain conditions worse.  What conditions?  My wife asked, “Do you think my husband has one of those conditions that steroids would make worse?”  Doc, “Well we don’t know what he has.”  Wife, “Well what is worse than not being able to walk, talk, eat, drink or take oral medications?  At this point I think making him feel better so he can eat, drink and sleep would be beneficial.  They gave him steroids in the ER without knowing what he had and he felt the best he’s felt in weeks.  From my perspective, steroids have already shown improvement for his unknown condition.”  My wife was fired up, but I still didn’t get any more steroids.

My wife went home late again Monday night and I was left alone with the nurse from hell. I have no idea why this woman chose to be a nurse and how she got hired, but I was shocked I survived the night in her care.  

Tuesday morning, my wife arrived in a panic.  She had been up most of the night brainstorming and making a new plan of action.  She said she had called the nurses desk around 12:30am to check in on me and to speak directly to my nurse, but she wasn’t available so she left a message to call back and that it was urgent. No one called my wife back. This worried her.  She knew I could barely speak and was having a hard time swallowing my pills.  She was worried that perhaps the nurse didn’t get a full explanation of what was going on with me since it seemed like every person who walked into my room had no clue what was going on. She also was panicking that I might choke on my phlegm or my own tongue. Was all of this information in my chart? Was anyone reading it? Her gut was telling her that she couldn’t trust this hospital with my care and we both knew that things weren’t moving fast enough.  My wife was determined to have me transferred, but she had no idea how to do it. She asked my daytime nurse for help. The nurse agreed that I was not getting enough attention here and I clearly had something of significance going on. She said her hands were tied because she had to wait for approval from the hospitalist for every little thing, such as changing my meds from pills to liquids. Several of her requests were denied or delayed so long that I was left suffering. The nurse said “If I were you, I’d be calling HUP.” My wife called the Hospital of the University of Pennsylvania and with ease got through to a nice human who actually offered a great deal of help. The woman on the line informed my wife that all we needed was a doctor to call and request a transfer. She added the caveat, “Our hospital is full though. You may get approved for a transfer, but you will still have to wait for a bed to be available. That can take days. I just want to warn you. If you think your husband needs a transfer, you need to start the process right away.”    

Another speech pathologist came in to see me.  She examined me again and this time I could not get my tongue out of my mouth.  And I could not move my tongue from side to side.  I could barely suck through a straw.  My wife watched in horror and told her, “That’s a 50% decline since yesterday.  Yesterday his tongue came out of his mouth and he could move it from side to side.  Yesterday he was drinking smoothies and today he’s saying that he can barely get them down.”  The pathologist ordered a swallow test for later in the day.  

I was freezing cold now too.  I could not get warm.  I had lost so much weight, my blood pressure was very low and I was so cold. The smoothies were barely going down.  Even the watered down smoothie my wife brought me that morning was so much work to swallow.  

An orderly came into my room to get me ready to go for my swallow test.  At the same time the hospitalist came into the room.  He was upbeat and again seemed totally unaware of my situation. He greeted my wife and rattled off how I was doing good and everything looks fine so far.  The tests coming back were all negative. I didn’t have meningitis! My wife asked sternly, “What is your plan?” The doctor was caught off guard and said, “My plan? What do you mean my plan?” Wife, “For his care. For treating him. What is your plan to make him feel better get a diagnosis?” Doc said, “We have to wait. The plan is to wait until we get more test results. He just had his bone marrow biopsy and those results take some time. Maybe a week, sometimes two.” My wife stated, “Your plan is to wait! A week? Two weeks? My husband doesn’t have a day!” The doctor replied, “Your husband is fine. I can see you’re getting excited. You just need to calm down. He’s fine here. These things take time.” Words he probably regretted immediately.  My wife took that opportunity to make things happen.  “He is not fine.  Don’t you dare say he’s fine. You saw him for 30 seconds yesterday and the only reason you’re staying in his room longer today is because I’m yelling at you.  How can you say he’s fine?  You haven’t seen him decline for the past 4 weeks.  You don’t even know what his symptoms are!”  As he was telling her to ‘calm down,’ she continued, “Do not tell me to calm down.  You have no idea what is wrong with him.  I am watching my husband die in front of me and you’re telling me your plan is to wait. Here? Should he wait here? Do you know that he can no longer swallow today?  He has a 50% decline from yesterday. Now he can’t eat. He can’t take pills orally and you denied the nurses request for liquid meds.” The doctor said, “We can’t treat him without knowing what he has.  Your husband is a very tricky case.  He’s a medical mystery right now and we need to wait until more tests come back. We also still haven’t received his MRI results from the outside imaging center that you used.”  My wife flipped out, “You have them! They were here at 2pm yesterday.  How do you not know that? I personally called the other facility yesterday morning to get the results here.  I had the receptionist at Jefferson on the phone while Vince’s nurse was on the phone with the hospital neurologist.  The four of us made sure the files were transferred and able to be read in your system.”  The doc was stunned.  He said he ‘had to check on that.’  Now my wife could follow through with the plan,  “I want to know by 5pm today if this hospital is the right place for him. If your team can’t come up with a plan for treatment, today, I have a car outside that will be warm in 5 minutes and I have no problem unplugging equipment.  I expect to see you in this room at least 3 more times today with constant updates from all teams involved.  We did not see oncology yesterday.  We did not see neurology yesterday.  I expect both teams to be in this room when my husband gets back from his swallow test.  If by 5pm you all haven’t come up with a plan for treatment, I will be moving him to another facility.”   

He left the room with a game plan courtesy of my wife.  The orderly and I had an awkward trip down the hallway for my swallow test.  

Sure enough, I failed my swallow test.  I was put on a strict ‘clear liquids only’ diet.  I could no longer swallow pills.  How would I get my pain med?

The hospitalist did come back into the room a few times.  He finally connected with the oncology and neurology teams and was brought up to speed on the results from Friday’s MRIs of my neck, spine and head.  The results again showed myeloproliferative disorder.  Both the oncology and neurology teams also visited my room, neither of them had much to say, but both agreed that my condition was worsening too fast to wait for any more results.  My wife expressed her desire to have me transferred.  She pulled on the heartstrings of both women. “If this were your husband, what would you do?”

By the late afternoon, I could no longer drink water through a straw.

I was in so much pain now since I could no longer take my pain meds orally and I had given up asking for anything in liquid form.  I’m not sure exactly what went down, but my wife left the room for a while.  Apparently she talked to the neurology NP privately and asked her to ‘step on toes’ and go above the hospitalist’s head to get me transferred.  My wife told her, “His plan is to wait. He said my husband’s case is a medical mystery and his plan was to wait for test results. This morning my husband was sucking water through a straw for his swallow test. He is now unable to do that. His decline is too rapid. I need you to step on toes here and get him transferred.” The NP agreed that I needed to be moved and she assured my wife that she was going to closely review everything with the oncology team immediately.      

Within 30 minutes the oncology NP came running into my room and said, “Mr. Paton, with your permission, I’d like to have you transferred to Penn as soon as possible.”  My wife without hesitation, “Yes. We agree.”  The NP said, “I’m going to go make that call now.  We can discuss things further when I have the details.”  She immediately left.  There was finally a sense of urgency in someone.  It felt like only a few minutes went by and she came running back into the room.  “You have been accepted to HUP with the highest level of priority.  You already have a bed and transfer is on the way.”  

Take away:  You need to be your own advocate and you need to have someone advocate for you. Only you know your body and what is normal and often your spouse knows you better.  

——————————

Continue reading ‘Part 4:” https://vincepaton.com/2024/03/09/cancer-journey-diagnosis-and-1st-round-chemo/