Tuesday, February 26, 2019

Recent Update Re: MY Life, the Universe, and Everything...

42

Thank you, Douglas Adams. I couldn't resist using a quote from "The Hitchhiker's Guide to the Galaxy" series in the title of this post.

So, on Sunday, I had an MRI to check on the progress from the PCV chemotherapy with an appointment on Monday to review the results... Well, there wasn't any growth from the tumor. The downside is that there was also no reduction in the size on the tumor. The discussion that we had kind of still supported PCV. Basically, it seems to be too soon to really see any positive results.

However, due to the other things that I had experienced from PCV led my neurologist to switch me off of it and onto Temodar chemotherapy. First off, it seems that Temodar is even more simple than PCV. With this, there is a 28 day cycle, but only 5 of those 28 days involve orally taking the Temodar. 23 day later, I'll repeat the cycle. Of course, during the 28 day cycle, I'll need to get blood tests to monitor the results/recovery from the side effects of the Temodar. Otherwise, there is no IV involved like there is with PCV. As well, there are no diet restrictions like the two weeks of the "P" during the PCV. The only similarity is to take the oral meds on an empty stomach.

No Rush to Chemotherapy

Due to the recent (round 4) surgery, we are also not rushing into Temodar. We are going to wait until the stitches are removed before we move forward. Currently, the plan is to have a follow up on 03/15 with the surgeon to do that very thing - to remove the stitches. If it is a go, then I will meet again with the neurologist to plan the schedule for Temodar. Hopefully, once I restart on chemo, I won't experience similar issues with the side effects!

Saturday, February 23, 2019

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?

Saturday, February 9, 2019

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?"