Saturday, December 29, 2012

Texas Angel

Took my sister back to the airport today. Really hated to see her go. She came up from Austin for the week to help us with the girls and give my wife some relief with the baby. It truly was a blessing to have her here as it was a rough week for me. I've felt like crap off an on all week. Nothing specific, the same old pains have come and gone and been kept at bay with medication but I'll go from feeling fine in the morning, to feeling like crap in the afternoon or vise versa. The feeling can best be described as "ugh". I hope this is still side effects of the Lupron and will be passing soon as I'm getting tired of feeling "ugh" at least half the time. My next oncologist visit is Wednesday, perhaps he'll have some answers. In the meantime, it will be interesting to see how we get along next week without my sister here to help.

Tuesday, December 25, 2012

Timeline

How did I get here in this position, writing this journal? I never really considered myself like Superman, the title just seemed to fit. In terms of super powers, I always felt a little more like Wolverine, sans the claws and metal skeleton. It was his ability to withstand pain and heal from injury that I somewhat identified with.

As a small child, I frequently got tonsillitis and eventually had my tonsils removed. Later, as I got into secondary school, I became a frequent allergy sufferer and had outbreaks of hay fever turn into a sinus infection 2 or 3 times per year. Other than these bi-annual events, I almost never had to go to the doctor and after getting surgery for a deviated septum a few years back, these events have become even less frequent.

I rarely got a cold, though sometimes my allergy outbreaks were difficult to distinguish from a cold, and I've only had the flu a couple of times in my life despite never getting a flu shot.

The only real exception to all of this was a time in 6th grade when I came down with a mystery illness that was never fully diagnosed. The going theory is that it was some form of mono, but I never really had all the standard symptoms of mono. This kept me out of school for the greater amount of a month, then it was gone and I got back to normal never to see any kind of relapse or recurrence.

My point in all of this is that, for the most part, I don't get sick, and when I do, it rarely impacts my ability to function. In my adult life, I've rarely had to take sick days off from work and have never had to use them all to cover an actual illness. I don't contract those illnesses that go around each year and on those rare occasions when I do get sick, I usually recover pretty quickly. I've also never been one to let illness stop me from getting things done. I've never been able to just lie down and relax when sick and unless I've got something potentially contagious, I usually go to work anyway or go ahead and get things done around the house pushing through the illness.

Even when I had the surgery for my deviated septum, the doctor told me to stay home and take it easy for 3 days. That barely lasted through the first afternoon. Working in IT afforded me the ability to get things done from home and, being outpatient surgery, I was home by noon and checking my email by 2:00. I worked most of the next day, staying home only to spare my co-workers from the sight of the drainage tubes that were protruding from my nose, and those came out earlier than they were supposed to.

So, with all of that said, how did I get here? Back in the summer, I had some back pain for a few days after doing some moderate yard work over a weekend. That, in itself, was not unusual, but what was unusual was that it lingered for the better part of a week and the regular tylenol and advil treatement didn't really help, especially overnight. My wife had some left over Vicodin from her gall bladder surgery, so I took those and the problem went away after a few days. I found it odd, but didn't think much about it, especially since it went away. A few weeks later, it happened again. Then I started getting odd random pains, primarly at night when going to bed. One night it would be in my left leg, the next night in my right. One night in my lower back, another in my upper back or neck. It was odd, but over the counter medication would take care of it one way or another and the pain would go away. Eventually, the pain settled in my back and became more chronic. Tylenol and Advil were able to relieve the pain, but it was having to take them regularly, several times per day, every day, so I went to see a Chiropractor.

The Chiropractor started treatment, making adjustments, with a lot of cracking, and some stretching exercises to follow at home. The treatments seemed to help, but the pain would inevitably come back. The pain moved my neck and stay there. I would wake up in the morning with a stiff neck. At one point, it was so stiff I couldn't move it at all without pretty severe pain, so I went to see my family doctor, who gave me some muscle relaxers and sent me to a physical therapist. The physical therapist applied some heat treatments and the same exercises that the Chiropractor had. Between the three, my neck loosened up after about a week, but kept coming back to a lesser degree. The pain started wandering again, and seemed to lodge between my shoulders frequently.

Because I work sitting at a computer all day, both my doctor and chiropractor assumed that it was probably caused by repetitive stress and poor posture, so I started taking steps to improve that problem. I purchased an adjustable desk for work that allowed me to alternate between sitting and standing while at the computer. I purchased a lumbar support pillow and made adjustments in my car seat and chair at work. I made an effort to sit with better posture and work with my iPad at eye level by propping it up on a lap pillow. I did the stretches and exercises as directed. All of that seemed to help, but the pain kept coming back or never really went away and I was still taking Tylenol and Advil alternately around the clock.

Finally, on November 8, 2012 two things happened that changed everything. I had an appointment with the Chiropractor the previous morning. Both he and I agreed that something wasn't adding up since the pain was not getting any better, so he ordered an MRI of my lower back to see if I perhaps had a bulged disc. I had the MRI done after work the next day. That same evening, I woke up about an hour or so after going to bed with severe pain in my back, neck and leg. The Tylenol and Advil didn't help at all and I went through the night in pain, with no sleep. The next morning, I asked my wife to take me to the doctor.

I was able to get in to see my doctor for a same day sick visit that morning. While I was there, just as he entered the examination room, a nurse came in and said that there was a call for him from my chiropractor. He took the call and came back into the room. The radiologist who did the MRI had called the chiropractor directly, which was unusual as he would normally just send a report over. The radiologist had called because he saw lesions on my spine that he thought could be an indication of cancer, possibly multiple myeloma. My doctor examined me, and then sent me out for a blood test, urine test, and CT scan. He also referred me to an oncologist for examination. This was the beginning of a dizzying whirlwind that covered the next several weeks.

I went straight from the doctor's office to get the blood test and pick up the supplies for the urine test. Apparently the urine test required me to collect it over a 24 hour period and would determine whether multiple myeloma was present or not. I scheduled my CT scan for first thing on the following Tuesday and got an appointment with the oncologist for later on that same Tuesday. In the meantime, he gave me a prescription for Vicodin to deal with the pain.

Tuesday, November 13, I got up and went to get the CT scan first thing in the morning. My appointment with the oncologist was for 11AM. By the time of my appointment, he had already received the results of my CT scan. He said that it showed that I had an enlarged prostate and that the blood test had shown my PSA level was high. He then referred me to a Urologist. Because my wife was scheduled to have a C section on the following Monday, he was able to get the Urologist to see me that afternoon. The meeting with the urologist was basically a consultation. He explained that a biopsy of my prostate was needed in order to determine whether it was enlarged due to cancer or for some other reason. Because of the time pressure we were under with my wife's scheduled delivery, he was able to schedule the biopsy for Thursday morning. Both doctors seemed fairly sure that the results would come back negative due to my age, the lack of standard symptoms for prostate issues, and the fact that my PSA level was relatively low even though it was elevated.

The next morning I had the biopsy. The urologist said that it would take a few days to get the results back and wanted me to schedule an appointment for Wednesday. I explained that Wednesday wouldn't be possible because that was likely to be the day my wife and baby would be coming home from the hospital. We left it with they would call me when the results were available so and we would coordinate from there.

Monday, November 19, my wife gave birth to a beautiful baby girl. My pain stayed under control during our time at the hospital. It was a welcome uplift after the previous week's events. The next day the Urologist called stating that they had the biopsy results back, however, due to the Thanksgiving holiday, the earliest that I could get in to see him was the following Monday. I went ahead and called the oncologist as set up an appointment with him for the same day.

Monday, November 26, I went to the urologist and he informed me that the biopsy results were positive for stage IV prostate cancer and that it had likely spread to my bones. I was in a bit of shock and disbelief. I didn't have much of a reaction. I wasn't even sure how to react. He explained that because it had spread, surgery was not an option and we would have to treat it with hormone therapy. He then gave me a prescription for some pills to take over the next 2 weeks in preparation for the hormone therapy (Lupron).

That afternoon, I went to see the Oncologist who went over it with me again and then ordered a bone scan to determine how much the cancer had spread. When the scan came back, it showed that it was pretty much everywhere and here we are today. My treatment, for now, consists of monthly injections of Xgeva plus bi-annual injections of Lupron. In the meantime, I have a Fentanyl patch and Vicodin to manage the pain, daily doses of stool softener and Miralax to manage the constipation caused by the Fentanyl and Vicodin, and twice daily calcium supplements to strengthen my bones.

It was a lot to deal with in a short amount of time, but I am grateful that my health coverage allowed things to move that fast without having to deal with a bunch of bureaucratic referrals and pre-approvals. I feel fortunate that I was able to go from diagnosis to treatment so quickly. I know there are other plans out there where that would not have been the case. For now, we just endure and see what the future brings.


Christmas Day

Christmas Day was a little rough. It started with a 4AM wake up and never really getting back to sleep. The girls were up at 6:30 to see what Santa had brought them. Pain level seemed a little elevated as I had to take a Vicodin roughly every 3 hours with a couple of windows of 5 hours, probably due, in part, to the fact that a new Fentanyl patch was due today. It seems like I'm pretty good for the first 48 hours on these patches, but the last 24 seems less effective. Whether it was the medicine, lack of sleep, general holiday madness, or something else, I found my self nodding off several times throughout the day. Finally ended things at 10PM, going to bed because I couldn't hold my head up any longer and now here I am, awaken at 1AM with hip pain, writing this post.

Friday, December 21, 2012

Day Trip

Today started out pretty well. I slept through the night, for the most part, and only had to take two Vicodin between 8AM and 3PM.

My sister flew up from Austin today to help us out over the holidays. With my double dosage of pain medication I didn't feel comfortable driving to the airport to pick her up so my wife drove, but wanted me to go along so that she wasn't making the trek alone with the baby. A perfect storm ensued along the way there and back. Despite taking a pill before leaving, I developed some pain, especially in my legs, on the way there and had to take another on arrival. I also hit my afternoon sleepy zone. And, to make things worse, the laxative that I've been taking to counteract the Vicodin and Fentanyl induced constipation finally started working. All of this made for a rather long and unpleasant 3 hour trip. Clearly I'm not yet ready for travel of any kind more than about an hour in length.

At least my sister made it here safely and even though I can't travel back to Texas this year, I still get to have some of my family here with me for the holidays.

Thursday, December 20, 2012

Double Double

Today went pretty well for the most part. Only slept in 2 hour increments last night. Fell asleep in the recliner only to be awakened by the 3 yr old at 2AM who came out wanting to konw where her sister was (sister was asleep in the top bunk as always). Put her to bed and went and got into my own bed. Baby woke us up at 4:30. Went back to sleep a while later only to be woke up by the girls at the standard 7AM time. Managed to go back to sleep once more, then woke up at 9:00 realizing that I needed to start work.

Didn't have to take pills constantly today, though I did take the fairly regularly. I think it was a good thing that I stayed home as even though I felt fine, I'm not so sure that driving would have been a good idea. Had several bouts of drowsiness throughout the day.

The Doctor's office called back about my prescription refill and advised me that they could fax the Vicodin to the pharmacy, but that I would have to come by and pick up the Fentanyl scrip. The pharmacy called a short time later to tell me that they didn't have that particular dosage of Vicodin in stock until after 2 tomorrow, so we opted to pick everything up tomorrow. I hope this doesn't turn into a holiday mess.

Sister is flying in tomorrow, so we'll have to figure out how we are going to go about retrieving her from the airport..

Wednesday, December 19, 2012

Double Down

Went to the Urologist on Friday and got my first shot of Lupron which is the actual treatment for the prostate cancer. In reading the pamphlet that came with it, it was mentioned that side effects included increased symptoms for the first few weeks after taking it. I was fine over the weekend. Monday was a Monday. I didn't feel so great and had to take Vicodin with a little more frequency than recent days, but otherwise wasn't that bad. Tuesday was a little worse. Had to take the Vicodin every 4 hours and was a little uncomfortable all day. Took my last one before going to bed and managed to sleep through til the baby woke up at 4:30. I had a little pain at that time, but figured that I could manage a couple more hours sleep without taking another Vicodin.

Woke up at 7:00 in a fair amount of pain. Even after taking a Vicodin, it seemed to grow through the morning as if I hadn't taken any. I called the Oncologist for advice. The nurse answered and told me to take an extra Vicodin and she'd call me back after consulting with the doctor. 10 minutes later, I felt fine which is weird because usually these Vicodin take at least a half hour to kick in. She called me back a few hours later and said that the doctor suspects I'm having a flare up from the Lupron and to double up on my pain medication, both the Fentanyl and Vicodin, for a few days. We'll see how that goes. Hopefully it won't make me a zombie, but I probably shouldn't do any driving until I'm back to standard dosage.

Sunday, December 16, 2012

Christmas Party

Went to the company Christmas party last night. First one I've been to in a couple of years. Had a great time and was touched by all of the Executive staff who came by to offer their sincere concern for my condition which got me to thinking about how fortunate I am to have such a great employer. I'm fortunate to be in a position where my condition does not cause me to be unable to work and that my employer gives me the flexibility to work from home on occasion. My boss has been great through all of this telling me to do what I need to do to get healthy and don't worry about having to adjust my schedule accordingly. He constantly asks me if there is anything that he can do for me. Last night at the party, he walked my wife and I down to the lobby on our way out just to make sure that everything was alright. I am so blessed.

Saturday, December 15, 2012

Back to the Grind

First week back at work after taking three off for Paternity leave. I must say that it was a much needed change of pace, much quieter than the chaos of home. Overall, things have gone pretty well. I've found that I get a case of medicine head everyday in the 3-5PM range regardless of my medication schedule. Around 5 it promptly clears up and I'm fine again until bedtime..

Wednesday morning I woke up with pain in my right leg. It started down in the shin and under the knee and worked its way up to my sciatic area. I decided to work from home that day as I didn't think I could handle the hour drive into work with my leg hurting the way that it did. By 11:00AM, the pain was gone and I felt fine for the rest of the day.

I had a little breakdown that evening as I contacted my sister to take her up on the offer to come help out over Christmas break. For some reason, communicating with her got me a little emotional. Shortly after, I was playing on the floor with my 3yr old. Watching her smile and laugh got to me as I had a momentary realization of just how much I love that little girl. I managed to hold back until we got the kids to bed, but then I lost it for a while. The potential loss of them is what gets me the most with all of this cancer business. It was good to have that cycle through my system.

I'm not sure what's going on, but I seem to have developed an inability to sleep for long periods. I tend to wake up with pain of one kind or another after several hours sleep. My theory is that is has to do with laying in one position for too long as I can only comfortably sleep either on my back or on my stomach so there's no real option to roll and adjust.

Friday I went to the Urologist for my first shot of Lupron. I stayed home from work as I didn't have any idea what effect it would have on my. Turned out to be a non-event. I go back in 6 months for the next dosage.

Saturday, December 8, 2012

Fentanyl day 2

Day 2 on the Fentanyl. I guess it's doing something because in the last 24 hours I've only taken about a third as many Vicodin as I normally would. I've had a few waves of drowsiness which, surprisingly, came in between doses of Vicodin rather than during them. Mostly I just feel blah and the pain seems to have shifted mostly into my hips for now.

I went to bed at about 9:30 or so during one of those drowsy spells but am now awake at 11:30 waiting for the Vicodin that I just took to kick in.

My oldest daughter has been acting up lately. I don't know if that's just adjustment to having the baby in the house, or if it's somehow related to me, either the fact that I've been under the weather, that I've been home for 3 weeks, or both. Maybe it's just the general disruption to her normal routine. Hopefully, she'll adjust soon, especially with me going back to work on Monday.

Friday, December 7, 2012

Fentanyl

My doctor prescribed Fentanyl for my pain management so that I don't have to keep taking Vicodin every 4 hours. The Fentanyl is a dermal patch that is supposed to be good for 72 hours. So far, I'm not too impressed. I put it on at 1:00pm today and ended up having to take a Vicodin at 6:00. Hopefully there is an adjustment period or something. I like the idea of not having to keep popping the pills, but other than generally feeling like crap today, it's tough to say how effective it is so far. Time will tell.

Dubstep

Today I had a detailed MRI done of my spine. My doctor wants to find out if any of the lesions in my vertebrae are such that they could pose a danger to my spinal cord. If so, then I may need radiation treatment of those spots.

It was long as MRIs go, took about an hour and a half, which is a very long time to lie still in a tube. Lying there, I came to realize that an MRI machine must be the origin of the "musical" style called Dubstep. It sounds like a combination of a 4yr old playing on an out of tune synthesizer, a broken floppy drive and the Sesame Street aliens throwing in the vocals. All that was needed was a dance beat and you'd have something dubstep.