A Change of Pace; Round 2

My current plan is to drop almost all of my vitamin supplement intake for multiple reasons:

1. For at least a week, prior to surgery, I am not supposed to be using ANY supplements. After 6 surgeries, I'm still not sure why I can't use vitamin supplements.
2. The cost of buying supplements.
3. The waste (given my minimal disabilty income) of purchasing single vitamins (A, C, D, E, etc.) and a multivitamin is a little much.

Well, my first reason is probably my least impactful. back in March, when Surgery 7 was originally scheduled, I stopped my vitamin intake. When the surgery was canceled, I went back on my use of supplements. The main reason that I'm thinking of this is that I will eventually have to stop using the supplements prior to the surgery - whenever it finally happens.

The second reason is a little more impactful. With the current situation, income is very limited. The last thing that I need to spend it on is my supplement intake. 

The third reason is just by my own choice. I found a good multivitamin through Vitacost. It uses 2 capsules per day, according to nutritional info. My goal was, and still remains, to use one per day just to insure the intake of the vitamins. It also increases the number of days that one bottle wil last.

So, after I run out of my current stock on hand, my plan is to stick to the multivitamin and the vitamin D until the week before my surgery final occurs. After that, I will re-evaluate how things are going...

Comedy or Tragedy

I think that I had a dream where I was performing on stage... No, wait... I DID perform on stage for many years of my life. 

What I have recently been thinking, though, is that maybe it would be a good thing to do to return to the stage. However, to do so as a stand-up comic! I mean, I have a LOT to talk about. As well, I could react to my experiences with either comedy or tragedy... The way things currently stand, I'll be going back in for surgery - the current planned date is Wednesday, May 13. The result will be having a dent in my head. Given previous experience with this, said "dent" will be a sizable concave in my head as seen is the following picture:

I am only guessing that the result from the upcoming surgery is going to mimic this appearance.

I could definitely be depressed from the results of my health. I could blame the things that happened to me during my life. I could be sequestered and isolate myself at home.

...Or

I could enjoy the good things in my life. I could share the experiences with others and, maybe, encourage people.

I actually looked in to visiting the hospital after my own recovery to visit the patients. I would share my story and/or get their stories... Basically, just to let them know that they are in the best hands.

While this is still a possibility, I'm not sure if is the best thing for me to do.

Laughter is the best medicine...

The other side of the coin is that stand-up comedy can be a very healing tool to use - not just for the comedian, but also for the audience. I mean, if I can go on stage and just get a laugh from the hole in my head - well, why not? Further, if I can encourage others by relaying my story through humor, I think that would be a great thing. Granted, I have a lot of work ahead of me. I need to revisit my past and construct my comedy bits. While I have worked with comedians - from follow-spot for Jay Leno to security guard for Joan Rivers - and have performed comedy skits and plays on stage with others, I have never been a comedian. So... Why not now?

Seventh Inning Stretch...

May not be the best title for this post due to the fact that the MLB is currently on hold due to the Coronavirus that is going around. This is, however, my own stretch...

I was scheduled for the 7th surgery for my skull to remove the implant on 3/11. It didn't happen because the surgeon, himself, was sick. (Hmmm... Coronavirus?) The surgery has been rescheduled for 4/15. Today, I got the call that ALL surgeries are being delayed even further. Instead of 4/15, I'm looking at 5/13 for the planned surgery.

The good news? I was finally given the permission to WASH MY HAIR! Due to the most recent surgery - and the resulting stitches - I have not been allowed to even get my head wet. I was starting to develop cradle cap! I'm still limited to using baby shampoo to wash my head - but, at least I finally can! As of this writing, I have been able to "clean up" the cradle cap. It didn't happen entirely with the first shampoo but, as of today, I'm all back to normal - well, MY normal at least!

Further, other thoughts have come to mind...
...but, I'll update you on that in another post!

Busy Day...

Today, I had 2 different doctor visits and stopped for a blood test between them.

The first was wth Dr. Baehring. With this, we verified that I have at least two more cycles of Temodar chemotherapy followed by another MRI to judge the progress.
My next cycle will start about 10 days from now and after I get another blood test next week to make sure things are doing well. Also, I'm taking a mini vacation next weekend, so I want to be back home before I start the chemo.
After these next two cycles and the MRI, it is expected that I will be done with chemo!

The second appointment was with Dr. Alperovich. He's the surgeon that has been closing me up after the last 3 surgeries - trying to fix the skin on my skull. In this meeting, we discussed when and where we will be going for the next 6 or so months...
Three weeks from now, I am going in for a CAT scan. This will start the next process. I will have a balloon installed under the skin on my skull. After that, the balloon will be inflated every week for several months to stretch my skin. Depending how it all goes, the plan is to reopen my skull, remove the balloon, and replace the missing bone of my skull with an inactive compound - an internal 'helmet' - that fits the hole in my skull.
The weekly pump of the balloon is expected to start in October, proceed until January or February, and have the rebuilding of my skull after that.
This is not a speedy process!

Wishes, Dreams, ... Life

Here it is. I've been writing this 'poem' for a couple of months - really, it has been since surgery #3. I wasn't too focused on it, but just writing down some thoughts as they crossed my mind. Last night was when I really focused on it and decided to make the video behind it, too.

So, here it is... Let me know what you think?

Wishes, Dreams, ... Life

A Busy Two Weeks!

OK, so... LOTS of unexpected events in my life over the last two weeks!  ...and, not for the best.

Today, I returned home from my surgery (round 4) and hospital trip, but here is where it all began...

Monday, January 28 - 

This was day 21 of my PCV chemotherapy - the last day of taking "P" (Procarbazine) during this cycle. Everything had been going just fine - until this point.

Later that day, I started to break out in HIVES! In addition to that, I got extremely dizzy when I stood up. Twice, I had to let Ginger out to take care of her business. She made it out the door....I made to the floor! I didn't pass out, but I totally lost my balance. Fortunately on both occasions, I didn't hit anything but the floor on my back.  No major pain, but we did call 911 the second time and I ended up at Middlesex Hospital. All they did while I was there was to measure my blood pressure in 3 different positions - lying, sitting, and standing. Due to the major drop in blood pressure while I was standing - 61/40!!! - they determined orthostatic hypotension being the cause. They basically just told me to keep hydrated to compete with the results.

Tuesday, January 29 -

After returning home, things went fine - but only for the next day. This time, when the dizziness kicked in, I didn't land as well! As a result, we drove to Yale-New Haven Hospital. They came up with the same diagnosis, but the hives had also really blown up! My arms and feet got really swollen! I was admitted to the hospital, but had to wait for a room. While I was in the emergency, they took a biopsy from one of the hives and started me on Claritin. Things progressed in my visit, got better, and I went home a couple of days later.

Monday, February 4 -

This time, I noticed that the stitched seam in my head had reopened in two places - again! Off to the hospital - again! Once again, I had to camp out in emergency until a room opened up, but surgery was planned for Wednesday. Rae, not having to work on Tuesday, stayed with me hoping to see some progress...

Tuesday, February 5 -

I WAS scheduled for the IV of the "V" (Vincristine) on this day - day 29 of PCV - but that had been cancelled due to the breakout of the hives the previous week. The MRI that was also planned didn't happen (and, I hadn't gotten the results from the biopsy!) Without any other progress, Rae had to go home to get some real sleep before her job on Wednesday.

I got the visit from most of the surgery team. The plan was to have the neurosurgeon present, but only would jump into action if there were problems that he needed to work on. Otherwise, the plan was to have the plastic surgeon to remove the titanium mesh that replaced the section of bone and restitch the seam.

Wednesday, February 6 -

Well, they moved me out of the emergency division into a room. About an hour later, I was headed to surgery...

...a couple hours later, I was back in the room and had a major headache (I wonder why!?!). Recovery began. Considerably uneventful. I had two IV imports, but never had either of them used after surgery. My only negative issues that I experienced during my stay had to do with the seeming miscommunication between the doctors and nurses. Depending on who I talked to, there were different rules for me. No major problems, though.

Friday, February 8 -

As I type this, I am back home. I now have the pleasure (please read the sarcasm) of wearing a helmet any time that I go outside! Considering that my skull is no longer complete, serious damage to my brain could happen with any trip, fall, or other hit to my head. Otherwise, everything should return to normalcy. We'll see how things go over the next couple of days.

MRI?

PCV round 3?

As Chicago would sing, "Where Do We Go From Here?"

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.

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...