Tuesday, October 25, 2011

D-Day (Diagnosis Day)

I wrote in a previous post about the last day I ever walked, earlier this year. On that day I didn't actually know what was wrong with me until a couple weeks later when I finally went to the hospital. However, if I would have accepted the diagnosis and advice they gave me on the first day I visited the emergency room....I am quite sure I would not be here even writing this blog today. I had to challenge their initial diagnosis based upon my instinct.

Two events caused me to take the step of going to the emergency room. Aside from latent fear of the cancer returning,  I wasn't enthusiastic to visit the hospital for more pragmatic reasons. First of all, I knew exactly what they would say if I complained about back pain--they would just take my money and then blow me off and send me home with some Motrin. Even though my feet and legs were feeling numb, the real pain was in my back, shooting up my spine. The numbness was just a strange nuisance at that point. I was so busy trying to take care of my kids, run errands, and work somehow in between, that I grew accustomed to being in pain a lot. I would have to be literally disabled before I would stop and take care of myself at that point. And that is what it came down to.

While interviewing a friend of mine who happened to be a nurse, for research on a screenplay, she began watching me with a lot of concern at the way I was moving. I staggered around like I had a wooden peg leg instead of a real one and had to use a cane. She urged me to get it checked out. So I decided to just look up the problem on the internet and see if I could diagnose myself. I was still convinced that if I went to urgent care or anywhere they would just tell me to get rest and take Motrin, like the many, many times before when I sought help. I didn't want to pay money just to hear that again. I've learned time and time again that they simply refuse to do anything for "back pain," and often become suspicious that you are hunting for prescription meds just to get high. However, I noticed online that there was one back pain situation where one should definitely go to the emergency room immediately. That was cauda equina syndrome. If I had that, nerves at the end of my spine were being compressed and if there was not immediate surgical action I could become paralyzed forever. When I looked at the other symptoms for cauda equina, I realized that they matched up with mine. I had just recently had some strange bladder urgency issues. Maybe it was just a UTI, but I wanted to rule out cauda equina at least.


Finally I called up a nurse hotline to try to get a second opinion to justify an emergency room visit. The nurse said that yes, I needed to go directly to the emergency room and I should go to the one in Joshua Tree. Of course I didn't go directly there. I picked up my daughter from ballet class, ran a load of laundry and sent off a couple important emails--just in case by some chance I ended up stuck at the hospital for several hours. Finally I left the kids and drove myself down to the emergency room and checked into triage where I was promptly told to pay a $100 copay.

When the doctor finally examined me, I brought to his attention that I was very concerned that I might have cauda equina compression because of the symptoms I described. I also brought to his attention my history with breast cancer. The last occurence was in 2008, but I had a mastectomy with clean margins and was negative for lymph node involvement. The doctor did a CT scan of my lower body and left leg. He then declared that I just had sciatica pain and that was causing numbness in my leg. He said that it should clear up in 2-3 days and he gave me a small prescription of Vicodin and some antibiotic to treat a possible urinary tract infection. I asked if the CT scan was clear and he replied that there was some little "artifact" showing on my lower spine, but that after consulting with radiology he decided it was too perfectly circular in nature to be anything but an artifact, so don't worry about it. It was the equivalent of a speck of dust on a lens.  I thought he should clarify with an MRI. But he was young and treated me with the dismissal  one gives a hypochondriac who looks up illnesses on the internet and becomes convinced of infection.

I hobbled back home on the crutches they gave me to replace the cheap cane I was using. I was kind of surprised that sciatica could be bad enough to require crutches to walk, but whatever. On one hand I wanted to be relieved. A doctor told me it was nothing serious! So it was NOT the return of cancer and the end of the world! And it wasn't cauda equina.

Oh how I wanted to believe all that! But my mind kept nagging me. Why didn't he give me an MRI? Considering my history, an MRI was in order. Well he didn't because HMOs don't like to pay for those and it's like pulling teeth to get one. I was restless all night, uncomfortable with the way my feet were ice cold to touch and the creepy anesthetic feeling. I just couldn't accept the diagnosis. I've had sciatica issues many times before, and my body was telling me this was not sciatica. I decided to return the next day, to the same emergency room, and just pressure the hell out of them to give me an emergency MRI. I was a little afraid they might turn me away since I had just been discharged the night before. But they were happy to take another $100 from me.

So upon my return the next day I got an older  doctor. He sat down with me as I explained all my symptoms and outlined why I felt an MRI was in order. I was ready for a fight, but he couldn't agree with me more. He was even surprised I had not been given one before, considering my history. So I got my MRI, and then laid on the gurney to wait 2-3 hours for results. Part of me was not happy that I had gone and done this. I felt like bolting from the room and driving home and pretending I had sciatica for a little longer.

The doctor opened the curtain to my cubicle, sat down next to me and told me I had "lesions" on my spine, lumbar area. He didn't have to explain to me that those "lesions" were most certainly cancerous tumors and that meant I had just catapulted to Stage 4 of the disease and that I was likely terminal now. He looked at me and we both knew that I knew what the deal was. I would have to be immediately transferred to the nearest Kaiser facility that had a neurosurgery unit, which meant Fontana.
I said "Ok, I understand. May I please have a Valium?"

"How many milligrams?" was his reply.

All I could think about was my children, and that I hated myself and my stupid body for letting them down. This was the last thing they needed after all they had overcome and dealt with in the last year.  There was a tidal wave of agony inside that would be so easy to give in to and cry for hours. Instead, I reined in all emotion immediately. But there would be no way to function if I fell apart. I told myself I would grieve about it another day, when there was time. (That day still hasn't been fit into my schedule)

I did have one small hope about my condition at that time. From what I understood, the lesions on my spine were small. It was located very low in the lumbar region (and I was right about it being a cauda equina related issue as well). It might be possible to deal with it surgically. I would still be at Stage 4, but perhaps my life could be extended longer that way and maybe more sensation would come back into my legs. With that in mind I made a number of phone calls to arrange for care for my children as the ambulance came to remove me to Fontana. For some reason I only anticipated being gone for maybe a week or two. I had no idea it would be months before I could return home, and that I would returning under hospice care. And just in case everything wasn't bad enough, another set of bad news was coming my way soon...

Fontana turned out to be a waste of time. It was a very old, overcrowded hospital and I wanted out as soon as possible. I was supposed to receive a more extensive emergency MRI while there, but they did not perform that, even after I had an accident due to the clutter of equipment jammed into that tiny room. Three days passed without the "emergency" MRI, and I could feel the paralysis starting to crawl up my legs and set in further, which frightened me. I insisted they send me to their Irvine hospital, so that I would be near my Orange County family, and also where I knew I could get an MRI quickly. Irvine had a beautiful brand new facility that I had stayed in before. But that idea got shot down because I found out that there were only three locations in the entire system that had neurosurgery units. And each one was at the oldest, most primitive facilities they had - Fontana, Sunset Blvd, and Anaheim. I voted for Anaheim, although I had very bad memories of going to chemo in the basement there and hated that location.

Upon arrival there I got my MRI, and then I received the next set of bad news. I didn't realize the first MRI I had out in Joshua Tree didn't even cover my whole spine. As it turned out, those lesions on my lumbar region were child's play compared to what had grown up in the middle of my back in the thoracic area. Those were much larger and developed, and we still didn't know if I had developed a secondary bone cancer or if it was the original breast cancer metastasized into my spine.

It seemed like they should have operated right away, because the paralysis was crawling further up my body by the day. But they messed around for days upon days upon days waiting for various other tests and scans (each with a backlog of patients ahead of me) and then accommodating strange insurance loopholes, such as the one that said I could NOT have a PET scan if I was an inpatient of the facility. I would have to be discharged first and made into an outpatient and then I could come back in a week for my appointment to have my PET scan at the hospital. It was the most insane thing I'd ever heard of. And it resulted in me being discharged in a bad state, dumped into a filthy nursing home where I promptly had an accident again soon after. I was returned back to the hospital via ambulance, with a severe pressure ulcer on my tailbone and they finally magically waived that outpatient requirement and graciously allowed me to stay in the hospital for the next days until my name came up on the PET scan waiting list.

By the time they did operate on me to try to remove or "debulk" the tumors in my upper spine, and perform a laminectomy, I was already fully paralyzed--which means the chances of ever regaining sensation after the surgery are pretty much shot. The surgery only gave my family, or my father in particular, the false hope that it would fix me somehow and I would walk again as soon as they did that. He did not understand that the surgery was merely for palliative reasons at that point.

That surgery was the worst I've had in my entire life (and I have had many surgeries). The pain afterward was so unbearable that I could hear myself screaming at times, but didn't realize I was the one making the noise. The ICU nurses were horrible and without the slightest bit of mercy. They under-medicated me by a long shot and did not understand my tolerance was already high despite constant referral to my charts. I heard all the other people in that ward suffering terribly also for several nights and it was like a scene from the movie Jacob's Ladder. Even when I was finally sent downstairs to the regular ward again, I was so weak that I couldn't even pick up my iPhone. The worst part was that I went through all that for seemingly no reason.

The surgeon could not remove the tumor because it was wrapped right around my spinal cord, and thus impossible to mess with at all. I was now fully paraplegic, and it was determined that I could not receive any more radiation treatment due to the placement of the tumor. It was at this point, when the pathology reports started coming in that the Oncologist visited me and dropped the news that he anticipated I had about 60 days left to live. We were both pretty matter of fact about it. I said, "6o days?? Damn, that's not enough time. You really think that's what I'm looking at?" He nodded, and urged me to wrap up my affairs promptly. We shook hands and he took off to go hand out some more death sentences before his shift was up I imagine.

In the days after, the next epic meeting would come, in which my entire medical team and the social worker came into my room to discuss how I wanted to handle the remainder of my life. I wanted to have that meeting alone with them, as I have always faced all of my medical decisions and announcements alone, without family members that might become emotional and distract me. But I was strongly urged by the social worker to include at least one family member, so I went ahead and allowed my Dad to come. That turned out to be a torture session for my father to listen to, and he had to leave the room a time or two because the news was so upsetting. I don't think he really thought I was terminal. I still hadn't shed a tear over my fate and I was businesslike as usual, taking notes.

I think in the end, perhaps it was good for him to hear the news from the whole medical team so that it would be believable.  Just coming from me he might just think I was pessimistic. To this day he still sends me articles about possible miracle cures. If someone's cousin's maid's friend's stepbrother had any type of Stage 4 cancer and then lived on ten years, I'll be told about it. I don't mean to always shoot him down by pointing out details like the fact that it's a different type of cancer or that nothing about their cases match mine.

As far as death discussions go, that is where it really becomes difficult to speak frankly. I believe that if you know you are like 99.9% likely to die soon due to an illness, it is better to be able to spend quality time with those you love, to be able to say your goodbyes in a fun and peaceful way, and work on overcoming all of the fear related to how things will go down in the end game. Other people consider that to be a negative attitude, and think it is better to deny that outcome completely and seek that miracle cure that must be out there somewhere. There is a lot of burden placed on cancer patients to have a "positive attitude," and though I am all for positive attitude in general, it also implies to many cancer patients that they are failing if they can't keep it up. We often say that people "lost their battle" with cancer if they are die, and I find that rather disturbing. We didn't choose this disease. We are not LOSERS because our bodies eventually give out. The constant denial of reality can stress a person out and have an even worse effect in some cases. It is also a front that we put on to help keep other people from experiencing stress. But why should the cancer patient have to expend so much energy always pleasing other people. THEY are the healthier ones.

I believe that there is strength in facing reality, and then planning your demise on your own terms as best you can. And hey, if a miracle happens and we beat the odds, that is only a bonus. Facing reality doesn't mean denying a possible happy outcome. Look at my case for instance--I have surpassed 60 days, and I am not dead yet. I haven't counted how many days I am past my expiration date, but one could say that each day is a miracle now.

How I actually feel about facing the idea of my own death is probably not at all what you would imagine. There are many layers of feeling surrounding that issue, that are constantly taking shape. I recall long ago before I was diagnosed with this disease asking myself and others a macabre question that I think many have considered at least once in their lives. If you could choose which way you wanted to die, would you choose a long, drawn out (and possibly very painful) death through illness, or would you prefer to die quickly with no warning through a car accident or something similar? Of course the quick death seems much easier. But if you knew you had say six months to live, you could say goodbye to everyone, you could wrap up affairs and make sure family is taken care of, maybe even do a few things you always meant to do before dying. However, you may experience months of massive physical pain, lose all "dignity" (usually meaning loss of bodily functions), and maybe you would not even know who your relatives are by the end of it.

So which is better? Quick death by accident or the long, drawn out one? I'll tell you what my choice would be in an upcoming entry. I'd be interested to know if anyone else has ever considered that, and what their answers may be.

5 comments:

  1. I think I would like to die in my sleep the likely answer right. But the problem with that is that now sleeping bothers me. Funny the crazy things on puts themselves thru. At night I have a hard time falling asleep as the weight of the universe sits directly on my chest. I often go into thinking "Where did God come from..." yeah and then I have to unwrap myself from that blanket of darkness. When I wake up I usually feel a wave of gratitude wash over me.

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