After a week of intense back and neck pain and other symptoms, on December 10th, 2023, I visited the local ER in desperation (see Part 1 blog entry). I was sent home from the ER still with a level 9.5 pain, and a prescription for Oxycodone and Lorazepam. The drugs I had been given in the ER had kicked in enough for me to get some sleep. I woke up on Monday feeling better. In retrospect, it was probably the steroid that provided some relief.
Tuesday, December 12th I followed up with my primary care physician as instructed by the ER doc. My primary doc seemed to be unconcerned and just told me to follow the instructions that the ER doc gave me: rest, heat, ice and physical therapy. She too passed off the chills, night sweats and body aches saying they could have been from a mild illness. After all, by this time the chills and night sweats seemed to have stopped. The body aches could have just been from the intense pain radiating from this mystery injury.
Since two doctors mentioned physical therapy, I thought I’d go that route. I scheduled an appointment for later that day. I was in so much pain again, I had no time to waste. That was not a good move. I was examined and lightly massaged. That sent my back into a tailspin. Level 10 pain again.
From this point forward I was bedridden. I got out of bed only for the bathroom, to get food and to go to additional doctor appointments. I was not getting better. There was little relief. I was working solely from bed now which was not easy. I was in and out of delirium and sleep because I was on so many pain killers and medications.
I went ahead and scheduled all of my remaining flex days and vacation days and took off from work the last two weeks of December. At the very least, I had already lost two weeks of normal life and felt like I would need some time to recuperate once this terrible pain subsided.
Wednesday, December 13th I was determined to figure out what was going on. I headed to an orthopedic doctor. He again said physical therapy was the way to go. I told him that I just went and it made things worse. He said I needed to go to physical therapy for 4 weeks before he could order an MRI. I was in no shape to do any sort of physical therapy! Doc said that insurance wouldn’t cover an MRI without doing 4 weeks of physical therapy first. I went home feeling completely drained and hopeless.
By this time my 24/7 pain was varying from a level 6-10 ALL DAY LONG. I was not sleeping. I was in too much pain. I was also on round-the-clock meds. Every night I was in and out of the bathtub. Hot epsom salt baths would relieve my pain down to a level 6 for about an hour and I could doze off. Then it was downstairs to fetch some ice packs and heating pads, count down the minutes to my next dose of meds and repeat until the morning.
Thursday, December 14th I was back at my primary’s office. She looked at me as if I was crazy. “What are you doing back here?” I was in excruciating pain. Why else would I be back in her office a 3rd time? I begged her for help, for an alternative. I told her the heavy meds weren’t working and I could only stand to take the Oxy for one day. It made me feel horrible. The Flexeril did nothing. The Lorazepam seemed to help some and at it least relaxed me and got me some sleep. She insisted that I just need to be patient and rest. The muscles were clearly seized and I needed to just wait for them to relax. I was sent home with Diazepam to take instead of the Lorazepam, because she thought that was a better drug.
Then came the weekend. I began to truly dread weekends because doctor’s offices are closed. Friday through Sunday was hell. Why wasn’t I getting any better? Why couldn’t any doctor seem to help me get some relief?
My wife being the ‘trust no one’ type, took matters into her own hands. She spent a good portion of Saturday on the phone with our health insurance company. She got details on our coverage, specifically with regards to an MRI. How would I ever figure out what was wrong without an MRI? Who could I convince to prescribe one for me? After my wife spent at least an hour talking with a human, taking notes, getting CPT codes, getting names and case numbers, asking to speak to supervisors, we were set. Turns out our coverage allowed me an MRI without any barrier of entry, and all I needed was a script. So where did the ortho doc get his information about needing 4 weeks of PT? He made it up! His assumption was passed to me which I passed to my primary doc. Neither of them thought of calling my insurance to verify my coverage nor suggested that I do so! The rest of Saturday was spent making a plan of action and searching for local doctors we would call first thing Monday morning.
Monday morning we set up appointments for later that week and into the next while waiting at a local walk-in back and spine facility. By this point, I couldn’t drive and my wife was taking me everywhere. I could barely sit down because the pain in my lower back was so bad. I had to sit on a portable seat cushion. In the waiting room, I couldn’t relax. The pain was so intense. I had to go to the car to put the seat back and lay down to take some pressure off of my lower back.
I was then seen by a young physician’s assistant. She was thorough. She listened and asked questions. She did not dismiss anything. My wife filled in the blanks as I was on so many meds, so sleep deprived and in so much pain there were a lot of things I just couldn’t remember, like the headaches. My wife mentioned symptoms that I had weeks prior and told the PA of my headaches and the night sweats and chills, which my wife thought must have been a fever. The PA was alarmed that my neck and back were both hurting. She said it didn’t make sense for an injury to present in two places at once. The random body pains in my abdomen, esophagus and legs were also unlikely to be from a back injury. She asked if I had any blood work done yet. I said, “No.” She was perplexed as to why my primary doc and the ER doc did not draw any blood. “Well, I’m going to start there. I’m also going to order you an MRI on your neck and your spine.” She sent me home with a prescription for Diclofenac. My wife and I immediately called around for an MRI appointment. The best we could find was December 26th, 8 days away, at a facility 45 minutes from our house. More waiting. I did however get the bloodwork done the next day.
Wednesday, December 19th I was complaining of intense tooth and jaw pain. My lip was numb as if I had gone to the dentist and had Novocain. I was talking with a slight lisp. My wife insisted I go to the dentist for x-rays. Perhaps I had an infection that was causing all of these issues in my mouth and neck. Maybe it just happened to be an abscess in my mouth at the same time that I mysteriously injured my lower back. We arrived at the dentist’s office and he did x-rays and a full examination. There was nothing wrong with my tooth, my jaw or my tongue from a dental perspective. Whatever was going on seemed to be nerve related.
Thursday, December 20th I had another appointment with a pain management doctor. He was also unsure about what was going on. He too said that having neck and back pain at the same time did not sound like an injury. Night sweats, chills, body aches, etc sounded to him like an infection of some sort or perhaps something rheumatological. I mentioned that the PA from two days ago ordered blood work and two MRI’s. He agreed that we needed to see those results before doing anything further. He strongly disagreed with doing any sort of physical therapy. “You can not do any kind of physical therapy without first knowing what you’re treating. You can really do harm.” Being a pain management specialist, he was not happy with my laundry list of medications. He insisted I chose ONE doctor to prescribe my pain meds so that I could be managed properly and not have the risk of over medicating. I agreed to let him manage my pain meds. He sent me home with a prescription for Tramadol, Gabapentin and Baclofen.
That night the blood results from the previous day were in. They were not good. I have some experience with looking at CBC results and I knew these were alarming. My first thought was cancer, but I was hoping it was not the case.
The next day I made another emergency same-day appointment with my primary care doctor. I wanted her to review these results and I couldn’t get an appointment with the PA at the back and spine facility for another two weeks. It was the middle of December. Everyone was sick. All doctors were booked up weeks in advance.
At first I was seen by a nurse practitioner in my primary’s office. I updated her on the past several weeks of hell and my frustration with not getting any answers. I gave her my blood results that were ordered by the PA. She took one look at them and left the room. She came back to the room with my primary doc. “Vincent, you have Multiple Myeloma.” With calmness and complete confidence, my primary care doctor just diagnosed me with what sounded like a death sentence (although she did say it wasn’t an official diagnosis but she was quite certain). She urged me to immediately see an oncologist and assured me that she would do everything she could to get me an appointment “soon.” My wife blurted out, “I hope you’re wrong.” The doc said she hoped she was too, but didn’t think so. My wife encouraged the doc to do additional blood testing. “Are there more tests you can do to narrow things down? What if it’s not Multiple Myeloma and we spend another week or two waiting to see an oncologist and this is the wrong direction?” The doc wasn’t happy to hear this, but obliged and agreed to do a couple more tests. She ordered about 3 tests that would possibly show her Multiple Myeloma (the nurse said she was “Googling” to figure out what tests to order). She did not test for any other type of disease.
Over the next couple of days, I was barely hanging on. I was now officially off from work and on ‘vacation.’ Every second was spent trying to find the slightest bit of relief from my pain and counting down the minutes to my next dose of meds, my next doc appointment, or my next phone call with a doc who could adjust my meds or give me permission for another dose.
Then it was Christmas day. I was in bed and could not participate, but I managed to drag myself downstairs to watch my son open his gifts. I was counting down the minutes to my MRI appointment the next day. Really not a great Christmas for me or the family.
Tuesday, December 26th we headed to the outpatient MRI facility 45 minutes away from our home. It had been 8 days since I got the script for the MRI. Those eight days of waiting were beyond brutal. During the car ride I felt every bump, every turn, every hill in my back. I was sitting on an extra cushion, the seat was all the way back so I was almost lying down. It was just one of the excruciating car rides I would have over the next several weeks.
At the MRI facility my wife explained to the woman at the front desk that I really needed results ‘stat.’ They were not ordered by the PA as STAT, but my wife insisted that a message be sent to the radiologist that these images were needed urgently to get a diagnosis. I had an oncology appointment the next day and we needed those results. The woman at the front assured my wife that she would relay the message. Normally results can take up to 7 business days. This is the standard gibberish they tell you, much like “You need to do physical therapy for 4 weeks before we order an MRI.” Again, my wife wasn’t having it.
Wednesday, December 27th was the highly anticipated appointment with the oncologist. It had been 7 days of hell, days of waiting in agony to see someone who could help me. The oncologist seemed uninterested. She looked at my blood work the PA had ordered and by now she had the few additional blood results that my primary had ordered. Her assessment: “I don’t know what you have, but it’s not Multiple Myeloma. Who told you that?!” She also looked at the MRI results from the previous day. It showed ‘myeloproliferative disorder’ which meant there was something wrong with my bone marrow. She said this could be viral, an infection of some sort or perhaps rheumatological. My lower lip on my right side was now completely numb and the numbness had spread to my chin. My speech was worse too. With her hands in the air the doc said, “That’s not me. I don’t know what that is, but that’s not me.” I had also been suffering the past several days with an excessive amount of phlegm in the back of my throat. Gross, thick mucus that I just could not clear. I would force it up and spit it out and it was bloody. For this she prescribed some Amoxicillin as a courtesy, reminding me that this too was out of her realm. The only thing she could do was order a bone marrow biopsy and go from there. She said she really couldn’t tell much until seeing biopsy results. She ordered a few more blood tests to rule things out. More tests, more waiting.
My wife immediately called to schedule the bone marrow biopsy. We had to go to the hospital that the oncologist was affiliated with. We had no options there. Why, I’m not sure, but when my wife called other facilities, they wouldn’t accept the order. So we were stuck at the local hospital with an appointment for January 10th. That was two weeks away. Two more weeks of horrible pain and zero answers. My wife asked how long the pathology report would take once the biopsy was done. She was told 1-2 weeks.
My decline was accelerating. I was calling one of the many doctors I had seen almost nightly because I was in so much pain at night, I needed to talk to someone to see what my options were for meds. I was asking my doctors if I should just go to the ER. They advised against it. They said the ER was filled with covid and flu and not a safe place to be. They insisted that the ER’s job was to get me out and all they would do is give me more meds, which I already had at home.
Thursday, December 28th I was back at the office of my pain management specialist. I was reviewing all the new tests that were ordered and the results that had come back. I was telling him about the constant numbness in my lip and explaining how it had now spread to my chin. He again mentioned this all being some sort of an infection or rheumatological disease. He said the numbness sounded more like nerve involvement. Something was happening with my cranial nerve. My wife immediately started looking for an infectious disease doc, rheumatologist and neurologist. The meds I was taking were barely helping me. I was at a loss. High dose Advil seemed to be the best. The pain specialist prescribed 600mg of Advil three times a day. Lab tests were showing high liver enzymes and perhaps it was too much Advil. I was probably doing damage, but I needed relief.
Later that afternoon, I was back at my primary care doc. I was seen by another NP. “Why are you back?” My wife lost it. “We’re back because my husband isn’t getting any better. He’s getting worse. Your office said you’d be here for us and help us every step of the way. The oncologist does not think this is Multiple Myeloma at all. Other doctors have mentioned that he possibly has an infection or rheumatologic disease, but an infectious disease doc will not see him because he doesn’t have a diagnosis. A rheumatologist won’t see him because he doesn’t have any blood work that shows a need to be seen. His bone marrow biopsy is two weeks away and will take another week or two to get results. He is in pain 24/7 and we need to expedite things.” My wife insisted that the nurse order more blood work. The nurse said, “We don’t really do that sort of thing. If we draw blood we are not able to interpret it. That’s really where the specialists come in.” Again, my wife didn’t accept this answer. “What is your job then? You’re his primary doctor. It is absolutely your job to find out what is wrong with him or at the very least decide which direction we should go in. We are not leaving this office until you order more blood tests. You don’t interpret them, the lab does. All we need to know is which specialists we need to be seeing. I want him tested for infectious diseases such as all the tick borne illnesses. I want some rheumatologic tests done. You should be ordering a laundry list of blood work because that is the easiest and fastest thing you can do. We have been here 5 times now. How are you going to help your patient?” A few more tests were ordered.
I was faced with another weekend and holiday to get through. A month of life went by and it felt like one long horrific day. I was still in 24/7 level 7-10 pain, with no breaks. My vacation time from work was up. It was a new year and I was not any closer to an answer. I was down 20 pounds and getting weaker and weaker. My son didn’t understand what was going on and he became afraid of being around me. My wife was exhausted and frustrated and I was just trying to get through each minute. I must have taken at least 4 hot baths a day. I had heating pads or ice packs all over me at all times while in bed. My wife was my caretaker and she started to sleep in another room because my pain and agony was keeping her up all night. She needed sleep so she could take care of our son, the home and me during the day. My mouth was now almost totally numb. I could no longer chew solid food. Saturday I had to chop my food very small. Sunday I had to pretty much puree it into mush and by Monday I was on a smoothie only diet. My speech was slurred. I sounded as if I had a stroke.
Tuesday, January 2nd, 2024 I was back to see the pain specialist. He asked why my primary was so slow in doing blood work. Had I seen an infectious disease doctor? A rheumatologist? I explained that it was almost impossible to get anyone to see me. Living in a small suburban town leaves few options for these doctors. Many are booked up for weeks in advance and only see new patients on certain days which puts the schedule months out. Some just will not consider you as a patient until you have a diagnosis. How do you get a diagnosis when everyone is either unwilling to do tests that might diagnose or unwilling to even see you? The conundrum was both frustrating and appalling. The pain doc did not like my recent blood work and said that I had to get off of the high dose Advil. My liver functions were tanking. He prescribed Celebrex.
Wednesday, January 3rd I had an appointment with a neurologist. I was progressing rapidly. Each day I had a new symptom. That morning I woke up with my lisp now so bad that it was frustrating and exhausting for me to talk. My wife was now my interpreter and doing almost all of my talking. I was pale and yellowish. I looked very sick. I had lost 25 pounds. The neurologist took one look at me and said, “You’ve got something going on. Where is your blood work?” We showed her the few tests we had. “Why hasn’t anyone done an extensive work up on you?” Our question exactly. She ordered every test she could think of because in her words, “Why not?! It’s the fastest and easiest thing we can do. Let’s rule stuff out while you’re waiting for this bone marrow biopsy.” She also reviewed the MRI results and disappointedly said, “These were done without contrast. I really can’t see anything without contrast. I need to order new images with contrast and also get an image of your brain. We need to see what’s going on in your head.” Finally. She listened. She was concerned. She was willing to go outside of her realm and order infectious disease and rheumatological tests. I could barely walk out of her office, my legs had started to hurt so badly that walking was now impaired.
My wife immediately dropped me at Quest to get my bloodwork done while she called around for the MRI appointment. Again, it was weeks out. She made three appointments. The earliest one was for January 23rd. It was January 3rd. I too called around. I found a facility in New Jersey, about an hour away that could see me on January 17th. At least that was sooner.
My wife had already begun to call the hospital daily to see if there was a schedule change or cancellation so I could get my bone marrow biopsy sooner. She said we would also call for MRI cancellations everyday. The 17th would never work. I needed those tests done weeks ago at this point.
Thursday, January 4th I had an appointment with a rheumatologist. My wife remembered that she had taken a dance class with a woman who was a local rheumatologist and had her own practice. She called in a favor and we were seen immediately. She was extremely thorough and ordered pages of bloodwork. She was also very honest, something we were desperately needing by now. She mentioned that one of my blood results specifically pointed to cancer. It was an odd sense of relief to hear someone finally say something more definitive, while simultaneously realizing a brutal road is ahead. I had been hoping for this to be Lyme Disease or a rheumatologic condition, both far less deadly and terrifying than cancer.
Friday, January 5th the rheumatologist called me first thing in the morning. She had already called the hospital and urged them to move my bone marrow biopsy up. At this point it was only 5 days away, but she insisted that my case was urgent and was somehow able to get the hospital to move my biopsy to the 9th. One day sooner was better than nothing. That morning I was off to get the bloodwork done that she had ordered for me as well as a chest x-ray that the neurologist ordered, but I couldn’t walk. I could not bear any weight on my legs because my calves hurt so badly. But it wasn’t my calves really, it was my bones. I could barely take a step. My wife had to help me to the car. As we were driving to the hospital, my wife told me to start calling the MRI facilities to see if there were any cancellations. I dialed, she talked. As luck would have it, there was an opening at 12pm at the facility that did my previous MRIs. It was 10am. I had to get a plethora of blood work done as well as a chest x-ray and needed 45 minutes to get to the MRI facility. I also needed Lorazepam, which was at home. There was no way I could endure the MRI without Lorazepam. Not only am I claustrophobic, but I would have to lay flat for 20-30 minutes and the pain of laying on a hard flat surface for that long required me to be drugged. We excitedly accepted the 12pm opening and felt another sense of relief.
We pulled into the hospital and my wife put me in a wheelchair. She raced me into the waiting area for blood work and x-rays. She hurriedly explained our situation to the women at the front desk and they all rallied for me. I was passed off to a nurse who did her best to keep me comfortable. Another nurse assured my wife that they would get my blood drawn and finish my x-ray in 45 minutes, enough time for my wife to go home, grab my meds and come back to get me.
The nurses had me waiting comfortably when my wife came back. We raced off to the MRI facility. Another ‘longest car ride of my life.’ I again felt every bump, every turn, every hill. Only this time the pain was way worse. I was in complete agony. Unbearable pain in my entire body. I think my wife was crying. We had to pull over so she could rip the car seat out from the back seat so I could almost fully lay down across the back bench. It’s amazing how even a slight turn can toss you around when you are not secured in a seat. I should have been in an ambulance at this point.
At the MRI facility, again, I was wheeled in. Ten days prior, I had walked in. The same tech was doing my images and by the look on her face, I surely looked a lot worse. My wife was pacing while making phone calls and trying to figure out next steps. How would I make it home? At least I took the Lorazepam and could maybe sleep.
As I was finishing up, my wife again went to the front desk and asked that my images be marked ‘stat.’ A different staff member said quite firmly, “We can’t do that. That has to be ordered by the doctor. It will take 5-7 business days.” Again, luckily, I had someone to advocate for me. My wife said, “You can’t? Or you won’t? You absolutely can make a call, send an email or write a note to the radiologist and say that this is urgent. You can see in your system that my husband was here 10 days ago getting similar images. Your co-worker knows that he walked in here before and now he’s in a wheelchair. We urgently need a diagnosis and these tests will help to get him one. My husband is dying in front of my eyes and now you get to see it too. You can choose to follow protocol or follow intuition. I need your help. You absolutely have the power to help him.” Or something similar to this. I didn’t hear it, but I believe my wife when she tells me what transpired. When I was finished and being wheeled out to the waiting room, the front desk woman quietly said to my wife, “I marked his file as urgent and sent a note to the radiologist to read his images immediately.”
It was now Friday and I wasn’t able to eat solid foods, I could barely talk and couldn’t walk. I had another dreaded weekend ahead.
Take away: Don’t accept what you’re told just because you think someone knows what they are doing. Keep asking questions. Push to get the care you know you need. Seek 2nd and 3rd opinions.
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Continue reading ‘Part 3:’ https://vincepaton.com/2024/04/10/cancer-journey-part-3-er-again-and-hosptial-admission/
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