Monday, July 2, 2018

Getting Back Into It - to a 'T'

Alright, the title of this post is a little too focused on the topic, but... 

I've been trying to do more exercise in order to recover from the events over the last 6 months. Five to six days per week, I've mostly done exercises that only rely on bodyweight - sit-ups, push-ups, planks, etc. - but, I also have a 20 lb. bar that I use for things like bench press, bent-over row, clean and press, and more. 

In addition to the exercise, I also spend time online trying to earn 'bucks,' points, cash, and bitcoins. One of the sites that I have been using is InboxDollars. Over the years, they have changed how you can earn dollars. Today, I was watching video clips on the site to earn some cash. I saw one video that showed the 'Bent-Over T' exercise. Given that you don't need equipment to do this exercise, I had to try it! I couldn't download the video I saw there... so, I recorded my own (it's not a spectacular video because I had to use my phone):

In my 'test' for the exercise, I did a superset: 20 reps of the bent-over row (not shown in the video) with the 20 lb. bar and followed immediately by 15 reps of the bent-over T. It felt amazing!

Change of Plans...

The original plans for today were for me to start on the PCV chemotherapy for the first cycle. However, those plans changed because of a blood test that I did from the week before. I was told that my results may indicate problems with my kidneys. Therefore, I need to do further testing. I have an appointment coming up on Thursday.

Here's the thing... the doctor that called me re: my blood test told my that the test indicated that my creatinine was high and that indicated that my kidneys may have been affected by the various meds that I had been using. The immediate result of the phone call was that I should stop taking the doxycycline that he had prescribed to me. The upcoming appointment was the only, other result that was generated.

Except for my research...

When I got to view the results, this is what I saw:

Component       Your ValueStandard Range

BUN30 mg/dL8 - 18 mg/dL
Creatinine1.90 mg/dL0.50 - 1.20 mg/dL
Calcium10.3 mg/dL8.8 - 10.2 mg/dL
BUN/Creatinine Ratio15.8  10.0 - 20.0

The line that mattered most to me was the BUN/Creatinine Ratio. Yes, the BUN and creatinine were higher that the norm, but the ratio fell right in the middle of the standard range. So, I looked into what the ratio meant. This is what I found:

BUN stands for blood urea nitrogen. Creatinine is a natural product of muscle breakdown that occurs at a low level in the body. Both BUN and creatinine are filtered by the kidney and excreted in urine. For this reason, BUN and creatinine are used together to measure kidney function.

The problem that I have with the doctor's decision is the fact that the creatinine results were not compared to the BUN and it seems that he didn't take the ratio into his judgement. Also, the 'muscle breakdown' is also a common result from exercise! Maybe, just maybe, the exercises that I have been doing for the last several weeks had an effect of the creatinine results?!?

At things stand, we'll see what the appointment on Thursday shows...

Monday, May 21, 2018

The Peak of the Mountain

It has been two months since my last post because my journey has taken something that seems to be a mountain climb - and not in the best way. I'm still striving to reach the peak.

For most of the month of April, you would have found me camping out in the hospital and it wasn't my focus to update this blog.

To start it all off, I woke up one day with the left side of my head very wet - almost like I was trying to wash my head while I was asleep. It turned out to be leakage from the surgery 'scar.' I washed up and went through the day without any further leakage - until the next morning. Again, I woke up to wetness. It wasn't quite as wet as the day before but, instead of what seemed to be clear water, I was now dealing with brownish pus. We scheduled a doctor's appointment to get this thing examined for Thursday, April 12. Literally, 10 seconds after the doctor met with me, he sent me to the Emergency Room to check in to the hospital and get round 2 of surgery done the next day.

Well, surgery was done around noon on that Friday. This time, they re-opened the original scar and cleaned out the growing bacteria. They couldn't seal up my skull with the bone this time so they used a web of titanium to replace the bone. After the surgery, they started me on two antibiotics to further fight the infection - vancomycin and ceftriaxone. These were administered through the 24/7 IV (intravenous) that I was hooked up with. The vancomycin was the main antibiotic they were focusing on. For this, I got 1500 mg over 1.5 hours every 8 hours. The ceftriaxone was meant to support the fight. I don't remember the dosage, but this was added every 12 hours through the IV. This schedule was intended to go for the next 6 weeks.

For the next couple of days, nothing changed - except they moved me into a private room.

April 16, there was someone standing outside of my room and making a call to my wife to inform her of what was about to happen... In order for me to continue with the IV at home, I was getting a PICC - peripherally inserted central catheter - that ran from my upper arm all the way to the superior vena cava. Also, at this point I was no longer on the IV 24 hours - just when I was getting the antibiotics. Since the install, the PICC was used for all of the IV and all of the blood draw for testing.

Wednesday, April 18, I was scheduled to go home, but a woke to seeing dried blood on the pillow. It turned out that a small area of the stitches was bleeding a little bit. As a result, I got re-stitched... and had to stay another day to make sure this stitch worked.

Thursday, April 19 - I'm home! Due to the time I left the hospital, I only had to do one more dose of the two antibiotics. A major change was with the ceftriaxone - it was administered through the PICC from a large syringe instead of a standard IV. For this, I would simply attach the syringe to the PICC and take the next 10-15 minutes to slowly empty the syringe. The vancomycin was the standard bag - 1500 mg on vancomycin in 250 ml of saline. For the next couple of days, everything seemed to be going alright until late, Saturday evening. I started feeling the flu-like symptoms. It was too much like what I went through so many years ago thanks to Rebif. Things got worse on Sunday. We called the visiting nurse to get checked on. By the time he got here, it was already decided that I would be going back to the hospital.

Sunday night, there I was... the Emergency Room - actually, I should have mentioned earlier that Yale-New Haven does not have an ER; theirs is an Emergency Department or ED. Originally, they put me in a room and started the blood draw, vitals, etc. It also came time for me to get my antibiotics. They, apparently, didn't want to use the PICC for any of my tests, so they had already shot me up with a new IV on my left arm. Immediately, the message was delivered that we would hold on using the ceftriaxone AND the seizure medication that I was using at the time - I would only get the vancomycin until further notice. The next day, they moved me upstairs to room 4830. This room had three beds. Both by the window were occupied - the third became my new location. Fortunately, that didn't last long! The guy next to me got to go home shortly after I arrived and I got to move to the window. That left Joe and I as roommates. He was a great guy and we hit it off right away.
As the meds turned out, I was officially taken off of the ceftriaxone and returned to the seizure medication. The next day, we got another roommate - Anthony. Dealing with the results of a stroke, Anthony actuality liked the bed that I vacated. He wanted the control over the privacy and control over the lights that he couldn't do with daylight from the window. The result was that Anthony, Joe and I formed a great bond. If one of us was sleeping, the other two would carry on a conversation.

Other than getting several doctor visits, no much happened for the rest of the week - except they decided to go back to using the PICC around Wednesday...

On Saturday, the message was delivered that I would stay on the vancomycin - but slow down the input to at least 3 hours per session AND need to use 25 mg of Banophen 15-30 minutes prior to my IV. "Why?" you ask. Well, this was prescribed to help fight off the Red Man Syndrome that the vancomycin was presenting.

Finally, on May 2, I was sent home. Since then, I have used my 3 doses per day of vancomycin - but my appetite has disappeared. Most days, I ate nothing. Others, I couldn't stomach more than 200-300 calories for the whole day. Nothing tastes good!

As of today, May 21 (and my mom's birthday!), I have added some plain, whole yogurt to my diet. If nothing else, my plan is to consume a couple of tablespoons to add the probiotics to my digestive system. Today, I was able to stomach breakfast, lunch, and dinner of 2 tablespoons of yogurt for each 'meal.'

So, while I am hooked up to the IV, I'm posting my experience with my climb of the mountain. Hopefully, I'll reach the peak soon!

Oh, and let me just note that, since the original operation on January 29, I have not experienced any seizures.

Wednesday, March 21, 2018

What Is This All About?

Wow - a LOT ha occurred since my last trip on my journey... On January 29, 2018, I experienced brain surgery on what turned out to be a TUMOR IN MY BRAIN!

While the long-time-ago-diagnosis of Multiple Sclerosis has not been ruled out, what was diagnosed as a MS lesion in my brain was changed to a LOW GRADE GLIOMA tumor! It's kind of amazing what a relatively-new-to-me neurologist will discover after 10 years - and rather upsetting that three other neurologists will just stay with the original diagnosis AND try to prescribe a different MS drug. Although I am still trying to find a local primary care physician, all of my other doctors are located at the Yale-New Haven Hospital - not too far from home, but not too local, either.

So, why am I actually writing this - or, as the title says, what is this all about? Mainly, my focus that I want to share is what I have been trying to do that would only help the matters of my health.

A not-so-long time ago in a galaxy - well, this one... I have found something that is supposedly beneficially to healing cancer. Pau d'arco tea is that thing! Check out this link for the information that is already spelled out - no need for me to copy it here. I've started using the tea daily - 2-3 servings each day. It's how I start my day every day. Recently - well, today before writing this post - I made a 64 oz. bottle of tea to refrigerate. This was actuality a mix of 3 different teas... I used the pau d'arco, added Bigelow's Lemon Ginger tea that gives me the benefit of probiotics, and some green tea that is just all-around beneficial in so many ways.

Another step on my journey is to stick to a low/no carb diet. Sugar is a cancer fertilizer! There are so many recommendations out there that say low/no carb is the way to go. This isn't new to me, but certainly a diet that I haven't done in a while. I had great success with it in the past and actually like where it can take me again - in addition to what it can/might do for me in the tumor situation. Both the positive and negative of the low/no carb diet is the tie to the Atkin's diet. Almost all Atikn's products are poisoned by sucralose - something that I WILL NOT CONSUME IN ANY WAY, SHAPE, OR FORM. It's not like I can't eat what I want to, though. There are plenty of better options than Atkin's products.

What's coming up for me is my journey through chemotherapy. In this case, I'm looking forward (sarcasm, intended) to the course of PCV chemotherapy. From what I've read, it could be a lot worse. This particular series involves 29 days of my life with a 'time-off' of 6-8 weeks between each session. During 2 weeks of that 29 days, my diet will be restricted due to the drug that is used during that time. I won't be able to eat most cheeses, anything fermented, and a number of other things that contain tyramine.
On the positive side is the fact that the doctors do not recommend any radiation treatment!

So, that's where my journey is currently. We'll see how things progress...