If at first you don't succeed...

Amusing anecdote -
My daughter, Coren, asked my wife the other day who was in charge of our family?
Erin said “God is in charge of our family. But He asks Mommy and Daddy to help Him be in charge. And when Daddy isn‘t around, Mommy is in charge and when Mommy isn‘t around, Daddy is in charge. But God is in charge of all of us.”
Coren thought this over and replied “Hmmm, Sometimes I think Daddy thinks he’s God.”
I can't argue with that.  It's true.
　

If at first you don’t succeed…
Wow. A lot has happened since my last post. And I can’t wait to tell you all about it. But first let me tell you what happened when I met with my Oncologist, Dr. Kominsky. A whole lotta nothing. Well, that’s not true, but it sure felt like it. Since numerous tumors were found in my PET scan, my first order of business with Dr. Kominsky was to get a biopsy. That sounds logical enough. I had a tumor under my left collar bone, a couple behind my heart and kidney, and another one in my lower gut. The tumor located under my left collar bone was determined to be the easiest to reach for a surgeon performing a biopsy. So Dr. Kominsky scheduled an appointment at the local hospital for me to have a needle biopsy. The procedure was pretty simple. I went to the hospital, checked in, dressed in the hospital garb, got wheeled into a laboratory office, received an injection of happy juice, felt a couple of pin pricks near my collar bone, and then got dressed and went home to await the results. Simple enough.

Now even before I had this biopsy, Dr. Kominsky was mentioning the possibility of Hodgkin’s Lymphoma. Because of the way the tumors were spread throughout my body and not confined to any specific internal organ, it appeared that they exhibited the patterns most associated with Lymphoma. A simple blood test was administered and immediately ruled out Non-Hodgkin’s which meant that if I did have Lymphoma, it would be the more treatable form of Hodgkin’s Lymphoma.  That's good news.

Well after several days, I heard from Dr. Kominsky and was told that the result of my biopsy was inconclusive or non-diagnostic. It appears the pathologists did not get a good enough sample to determine much of anything. So a second needle biopsy was scheduled, this time with bigger needles. Once again I went to the hospital, got checked in, dressed up in the hospital garb, got wheeled into the same laboratory office, received some more happy juice, felt a couple of bigger pin pricks, and was wheeled back to my hospital room. Now unlike the first time, I wasn’t able to get dressed and go home right away because I had to have a bone marrow biopsy, as well. The doctors came in to my hospital room, had me flip over onto my stomach, and then used some sort of medieval boring tool to screw a hole into my hip and excavate marrow from my bone. Not pleasant. Not pleasant at all. But luckily I still had some residual happy juice in my system so I bared it with relative ease. Once they were finished and I had rested the required time, I got dressed, limped out of the hospital, and went home to wait again. Well, thankfully the bone marrow biopsy came back benign, but wouldn’t you know it - the results from the needle biopsy came back non-diagnostic. Again. Shoot! I guess they were still unable to determine anything from the needle biopsy sample size.

Dr. Kominsky was done fooling around now. He wanted a bigger, substantial sample that would prove once and for all that I have Hodgkin’s Lymphoma. It was decided that a large wedge-shaped section of the affected lymph node would be removed. As I met with the surgeon performing this operation, he told me the reasoning behind acquiring a larger biopsy sample. He said that with a needle biopsy a pathologist doesn’t always get a full assessment of the infected area. He likened it to a slice of pizza. If a person were to blindly grab with their fingers at a piece of pizza, they would likely get some cheese, tomato sauce, and crust. But chances are they would not grab all of the toppings of the pizza so they would not be able to determine what kind of pizza it was. So because he was going to go in and take out a slice of my lymph node, the pathologist would be able to see a whole slice with the cheese, the tomato sauce, the crust; but also the pepperoni and the olives and mushrooms and cancer. Hmmmm, yum. Cancer pizza. I asked a question that seemed logical at the time, “If it is better to get a slice of pizza, why not get the whole pizza? After all, I know a lot of people that get half pepperoni, half cheese on their pizza. What if I have a half benign, half malignant pizza?” Well, I was told that the complete removal of this particular lymph node would be tricky because it lies on top of some pretty major blood pathways. The surgeon did not feel comfortable slicing underneath the lymph node and risk possibly slicing up some things that are not meant to be sliced up. I appreciated his reluctance to needlessly slice me up and accepted that a slice was better than nothing.

I went to the surgeon’s office and got knocked out completely this time with some extremely powerful happy juice. An hour and a half later I woke up in a haze suffering from a severe sore throat - the tubes that were inserted into my throat to administer the anesthesia left me raw for a few days. I was asking for water for my throat when I saw Erin by my side talking to the surgeon. I heard a few words, not many, but what I did hear included “went well”, “good sample”, and “he did great”. That’s right! Did you hear that? I did great. I am able to lay motionless on a table for an hour and a half with the best of them.

Feeling confident that I will have answers from my latest biopsy, I looked forward to hearing from Dr. Kominsky. Unfortunately, when I heard from him I was greeted with more uncertain and vague results. The sample slice of the tumor was tested and deemed benign, but still looked highly unusual. It was sent to the NIH, National Institute of Health, for further review and hopefully, more clarity. Well, after three biopsies and three inconclusive results, Dr. Kominsky was a at a loss and decided it would be best if I stopped messing around and saw the big guns of medicine. He referred me to the Mayo Clinic and asked that I see an Oncologist and Neurologist to discuss my illness. I was scheduling the trip to Arizona and getting everything set up when we heard back from the NIH. They said that the sample they received was highly suspicious and they strongly suspected Hodgkin’s Lymphoma, but they wanted another lymph node, a whole one this time, to dissect and examine. Because my trip to the Mayo Clinic was just a couple of weeks away, Dr. Kominsky suggested I see the doctors in Arizona first and if they still didn’t have answers when I returned, then we would go ahead and remove another tumor. As it turns out, I didn’t have to wait to come back before having another tumor removed. I ended up leaving a piece of myself in Arizona. A Cancerous piece. But that will all be told in my next post, when I share the details of my trip to the wonderful land of Arizona and it’s fine medical facility.

We are almost caught up to the present and you have almost been told about my past year which means we can stop toiling over the past and start focusing on the days ahead. I’m looking forward to that.

What the what?!?!

Okay. Where were we when I left off? I think I was going to have another MRI done to verify that I did not have MS, multiple sclerosis. Well, I won’t keep you in suspense any longer. I don’t have MS. Okay then, so what do I have? Interestingly enough, some blood work came back from my last visit with Dr. Mackay, my neurologist. The results showed an increase of a certain antibody within my body and from this result, Dr. Mackay was able to say with confidence that I had a neurological disorder known as Anti-acetyl choline receptors on the autonomic ganglia (not myasthenia gravis). What the what? You may be saying to yourself that this is some sort of made up diagnosis. That this is actually something doctors tell people when they have no idea what ails them. I know because I thought this same exact thought. But no, there is actually something known as anti-acetyl choline receptors on the autonomic ganglia. And I have it. It is extremely rare and there doesn’t appear to be much information concerning this particular disease. Dr. Mackay told me it was very treatable, however, and all I needed was a series of IVIG infusions, a week’s worth, and I would more than likely be fixed. And he said that once this illness is treated, that it doesn’t come back. I couldn’t believe it. I was so excited. I had an answer and it was a treatable one at that. I was told that my insurance company would need to approve treatment as it is very costly, but once that is done, I can come back and start treatment immediately. I went home, told my wife the good news, and waited for the insurance company to respond. Well, the insurance company responded. PAYMENT DENIED. You have to be kidding me! WHAT!?!?! Let me get this straight. I now know what is wrong with me and I have a method of treatment to make me well and the insurance company is denying payment?!?! My doctor’s office wasn’t too worried and they seemed to think this was quite normal. They said that insurance companies tend to deny expensive treatments straight away, but once an appeal with a strongly worded letter from a doctor is made, the insurance companies usually backs down and allows treatment. So a letter was drafted, a second appeal was made, and I sat back hoping for the best. Nope, not this time. PAYMENT DENIED. Again. Well, I am not going to lie to you. I was extremely perturbed. Some would say I was downright pissed off. Now get this - Because the medical system is completely looney, I only have three appeals per calendar year before my insurance company pulls the wool over their eyes and puts their fingers in their ears and starts singing “la la la, I can’t hear you. La la la.” After a denied third appeal, I have to wait until the next calendar year to begin the appeal process again. I was a bit worried that I would be turned down for a third time, so Dr. Mackay suggested that I see some other doctors and see if I can get them to sign off on the recommended treatment. Perhaps my third and last appeal could be made stronger if I had a panel of doctors all recommending the same thing.

So over the next few months I saw a whole slew of doctors and had a whole bunch of tests done. Some tests I had had before, but some were new. I told them all my sob story. And I answered all their questions. One Urologist I saw at Virginia Mason in Seattle wanted me to have a Urodynamics test. “Sure” I say, “Bring it“. I don’t know what this test is but I figure if it helps me get answers and gets my treatment then I am all for it. However, I now know that I really should look into what a test is before I arrogantly say “Bring it“. Lesson learned. For this test, the nurse inserts a catheter up the penis and drains you of all your urine. They push down on your abdomen and sensitive areas to ensure that every last drop is out of your bladder and then insert a couple of other tubes up the penis. One tube being a monitoring device and the other being a tube used to force liquid into the bladder. That’s right - INTO the bladder. You see, the purpose of this test is to fill your bladder with a known amount of liquid and then once full capacity is met, the patient is required to urinate the fluid back out while the muscles are monitored for functionality. All of this while being X-rayed. Well, if you recall, throughout this whole experience, my bladder has stretched to hold an insane amount of urine. So they took one bag of saline and injected it into my bladder.
“Okay, do you have to pee now?” they asked.
“Nope.” I said.
“Interesting.”
Bag number 2 comes out and more saline is injected.
“How about now?”
“Still nope.”
“Hmmph, well do you think you could urinate if we let you try a little longer. You see, we don’t want to put too much fluid into your bladder.”
“I appreciate that. I’ll try.”
So there I am. Standing naked in front of an x-ray technician, two nurses, and my doctor trying to urinate when I know I can’t. I physically can’t. Some time passes and I am obviously frustrating them as they slowly begin leaving the room one by one until I am standing there all alone. With tubes coming out of my penis - standing over a urine receptacle. Occasionally, the nurse pokes her head in the room. “Any luck?’ “Nope. I’m afraid not.” “Okay. Just keep trying.” Oh you mean I should be trying to pee. So that is what I am doing wrong. I haven’t been trying. Interesting. I’ll give that a shot. I’ll try now…

Sorry. I don’t mean to sound pouty, but I was extremely frustrated. I wanted out of there. I wanted to be done with that test and in my car heading north on I-5. Heading home. Finally. Thankfully. Something opens up and I am able to void my bladder completely. The x-ray technician is long gone by now so none of this was recorded by the x-ray machine. But I didn’t really care. And truth be told, I don’t think the doctor cared either. He could clearly see something was wrong and tells me as much. I let him know what Dr. Mackay found and asked him if he thought that sounded like a reasonable diagnosis. He said it sounded reasonable and then said he would add his name onto the insurance appeal. Yes!!! Success! One more doctor to add to the list. I thank him for his time and leave.

During this time I also saw a Neuro-Urologist at Virginia Mason. What a waste of time that was. After getting a physical and answering all the standard questions, I was told that I should try and drink more water and see if that helps. Thanks for the advice Mister Neuro-Urologist. Next!

I found my way to the University of Washington’s Neurology Department and met the nicest old man named Dr. Philip Swanson. This guy rocks. He found out I was a stay at home dad and told me to read his friend’s book, “The Kitchen Sink Papers”, which is about his friend’s experience as a stay at home dad. He asked about my kids and told me amusing anecdotes of his own grandkids. After our chit chat he administered his own examination. I told him about my diagnosis and wondered if he thought that might be a likely cause of my problems. He said it might be and ordered some blood work to verify the results obtained from Dr. Mackay several weeks before. I went down to the lab, drew some blood and went home. I came back a week later to meet with Dr. Swanson. He asked if I had a chance to read his friend’s book yet. I hadn’t and he looked a bit disappointed. I need to look up that book. He asked after my kids and told me to bring them next time as he would like to meet them. I told him I would. I won’t though. I don’t want to drag my kids through a hospital for half a day and have to worry about taking them to the potty when I am trying to meet with the doctors. But it was sweet of him to suggest it. Anyway, my blood work results confirmed the previous findings. However, instead of recommending IVIG treatment, Dr. Swanson suggested I have a PET scan administered. You see, our bodies do interesting things when fighting cancer and producing irregular volumes of antibodies is one such thing. Dr. Swanson wasn’t expecting to find cancer from the PET scan, but he said it’s better to be safe than sorry. So I had a PET Scan two weeks later and heard from Dr. Swanson a couple days after that.
“Well, hello there Nathan. How are the kids? “
“Fine, thank you.”
“Have you had a chance to look at that book yet.”
Dang!
“No, not yet I’m afraid.” I really have to look up that book.
“Well, I’m calling because we found some interesting results from your PET Scan.”
“Really? Interesting how?”
“Well, the scan revealed several tumor like growths throughout your body.”
“Wow. Really?”
“Yes, I’m afraid so. I think it’s best if you and Dr. Mackay contact the oncology department in Bellingham and get these growths looked at.”
“Ok. I will. Thank you.”

Enter Dr. Kominsky. My newest doctor. My oncologist.