Chapter 13: Snail Mail & Blogs

Chapter 13: Snail Mail & Blogs

I know you InfoTechers will be astounded by this, so I'll  speak the words v-e-w-y, v-e-w-y s-l-o-w-l-y.


There are people in this life that DON'T own a computer.  Most of these people also do not own a cell phone and those that fall in between own something that isn't smart but is very gymnastic (i.e., it can do a flip).  They still rely on land lines and the US Postal Service. So, I want to give a shout out to my favorite snail mail followers.
                   

Meet Ed and Betty.  I'm not going to put their full names into into this blog, because invariably it will invite some nefarious actions from unscrupulous people.  In other words, someone may try to scam them.

I've known Ed and Betty for many, many years.  They are grandparents to some of my best friends and great grandparents to even more.  When Connie and I flew north for the wedding in May, they sat in the pew in front of us.  They are just a darling couple in their mid 90's.

Later at the reception,  we were seated at the same table as Ed.  Betty wasn't able to make the trip to the reception, which was kind of in a barn in the middle of nowhere.  Ed made a specific point to get up from his seat and come over so that he and I could chat.  He was very interested in my condition and kept telling me they would pray for me.  I committed to sending him paper versions of my blog posts and any random pictures I would run across (I have like a bajillion digital pictures and a 4x6 photo printer that works pretty darn good).

Well, sometime last week Connie got a phone call from her niece who was visiting her grandparents Ed and Betty, and also had her kids along.  Ed asked to speak to me, and I was flabbergasted at what he said.  He apologized to ME for not doing a better job of communicating.  This loving man who is in his golden years, not terribly mobile but still moving around was apologizing for lack of communication.  He told me that I was very good with words, and he knew the words and their meanings, but didn't have the ability to put them together the way I could.  I thanked him but told him any communication I got from them I cherished.  I told him that I had not been very expedient in posting during the month of July because it frankly was not a good month, and I had suffered a lot of pain and discomfort and anxiety during the month.  He said he was afraid that may have been the issue.

When the phone call was nearly concluded he asked if they could sing a song for me and I said "absolutely" and put my phone on speaker.  I couldn't figure out how to record the audio, but there are versions of these songs being sung by them at many weddings.  The lyrics are:

May God's grace go before you

May His love enfold you

May His mighty arms uphold you, protect you

Til we meet again, go with God

70th Wedding Anniversary Photo

And the final tune was:

May God bless you with His love

Always fill you with His love 

May He hold you in the hollow of His hand

For the Lord is with you in goodness and love 

May His light shine out in your heart

I hope this encourages someone out there to "pay it forward".  Do something nice for someone, maybe someone you don't know or do something anonymously for someone that you do know that has a need.  Meanwhile, you can thank Ed and Betty for the blog post.  They are very inspirational.

Chapter 12 Meds and Side Effects

It's inevitable.  If you take certain classes of drugs for pain medicine, a lot of very odd things happen to your body.  I started this chapter thinking I was going to describe in detail the effects, but quickly realized many of these would not be appropriate for my family-based blog.  Instead, I've decided to play a word-association game in this post, where I will imply what the undesirable side effect is and invite you all to imagine it, realizing some of you may have context and really "get it", whereas others are lucky enough to have not experienced anything like it.

So here we go.

A. Constipation:  Also referred to as "Stuck in the middle with poo."  A very painful condition where your digestive track pretty much turns to concrete.  Can last several days.

B. Diarrhea:  Also referred to as "the breaking of the damn" whereby condition A is alleviated by condition B.  This is a cyclical series of events where one just repeats A, then B, then back to A and B, etc.

C. Incontinence (pronounced in continents).  Unbelievably, this has hardly anything to do with traveling the continent of Europe, staying in youth hostels and hiking around the Swiss country side.

D.  Bertie Go (actually spelled Vertigo but I'm positive this is they're saying) Bertie Go).  I wasn't really sure about this one, but it seems to be related to someone named Bertie who can't tell down from up and falls down a lot, possibly due to extreme dizziness.

E.  Partial hearing loss from whole brain radiation.  (Might explain Item - D Bertie Go).

F.  Extreme fatigue - Sorry.  I fell asleep while writing this.

G. Cold symptoms - stuffy nose, congestion, etc.  If you have allergies you pretty much endure this all the time.  I was on allergy shots before all this happened and had to stop.  So I'm getting this one doubly bad.

H. Back pain - if you've been reading this whole blog, you're likely aware that back pain is where the journey began.

I.  Broken bones - that's right, some of these meds cause bone weakness that makes it a lot easier for a patient to bruise or break a bone.  Couple that with the fact that I have bone damage from the cancer, particularly in my spine, and you'll know why I walk with a cane.  I can't afford to fall down go boom!

J.  Numbness/tingling legs.  This one has caused me to sit on the edge of the bed at night and rub my legs.  I don't think there is anything about numbness that is comfortable, as Pink Floyd would have you believe.

K.  Inability to make strong decisions.  I don't think I've suffered from this particular side effect, but I may have at certain times.  I couldn't really decide whether to even mention it in this posting.  I asked Connie and Mom and both said it was my decision to make, and I agree with that; so I flipped a coin.  Heads for yes, post it; tails for skip it.  It was tails so I went for best of 3 flips.  Tails prevailed again but to ensure I'd considered all aspects of the decision before making it, I drew straws, played some mumbly peg and in the end threw a dart at a paper on the wall that had the words "Post" and "Don't Post" on opposite sides.  It came up post so here it is.  Of course I can't decide what to say about it so I'm just going to let you all figure it out for yourself. Be decisive.  That's my advice; I think.

L. Blurred vision - I hope Robin Thicke and Pharell don't read this; or Marvin Gaye for that matter.

M. Insomnia - this is quite possibly the bane of my existence.  If I can't sleep, I can't function the next day.  If I take too many sleep aids, I can't wake up all the way the next day.  So between the fatigue and the insomnia, it's a tough row to hoe.  I had an employee in Ohio who asked me once "what's a rode-a-ho?"

Sometimes these can happen more than one at a time, and if it does it is very difficult to deal with.  Especially if it involves any part of the digestive tract.  Planning is essential in these times as you can't ever tell when a situation might become urgent, if you know what I mean...  All in all I find it better to stay close to home as much as possible.

There are many other potential side effects.  These are only the most common.

In my next post, I'll be talking about the cyber-knife experience from December of 2016.  I'm catching up to real time, slowly but surely.  If I had started blogging from the beginning, I think I'd be current, but at that time it just seemed too daunting of a task and I wasn't comfortable sharing a lot of this information.  Now, as intended, I'm finding it helps me keep a good attitude, and also like the fact that I may be helping other people struggling with this (or any) disease to cope and see the good side whenever possible.  Please feel free to share the link with anyone you think might benefit from the content.

Take Care,

JenMc

Chapter 11 - Happy Seizureversary to Me!

Yesterday, August 8, 2017 was a very important holiday.  It was my first Seizureversary.  It was also my sister's 60th birthday. (Happy Birthday, Nanny Goat).  AND, it was  

NATIONAL SNEAK SOME ZUCCHINI INTO YOUR NEIGHBOR’S PORCH DAY

Sorry I didn't give you a heads up so you could do your zuchinni Sneaking, but it just got by me.  

Please note in September, we need to be aware that the 22nd, in addition to being the beginning of Fall, more importantly it is Elephant Appreciation Day.  Be nice to elephants.... They won't forget it.

Chapter 10 Breaking News

Well, it was an adventurous July of 2017.  I know I'm not to that point in my story, but as I decided earlier if something happened that I couldn't wait to tell you all, then I'd use a "breaking news" format to leap ahead to today, then the next posts I'll revert to the timeline I was following, which I believe is the last quarter or so of 2016.

One of the hardest parts of writing a blog is keeping track of what I've already told you and trying not to repeat content.  Sometimes it is necessary to give context to these breaking news formatted posts.  Ideally, if I had been up to writing the blog from the beginning of the story last August 2016, then it would have been much easier if I had told it as I went along.  But I was not in the frame of mind and didn't think I could really talk about it at the time; nor did I think I would ever want to publicly discuss my disease.  I realized after meeting many, many other cancer patients that I could have an impact on them and their friends and families; in a very positive way by bucking up and pretending to be brave.  That's right; this is all an act.  I'll tell you the truth now; I've been scared a lot; I've been depressed a lot; I worry frequently, and I cry quite a bit.  The only thing I actually like about this phase of my life is I finally have curly hair!

So, here's the "news scoop"; I had a full body PET scan toward the end of June.  It showed a lot of what I'd like to refer to as remission; most of the lungs were cleared up, as well as the lymph nodes, a lesion in my liver, and bones in my back as well.  These were taken care of by the immunotherapy drug called Xalkori which I had been on for I think 6 months.  I think I was ecstatic at the time, and I may have referred to this result somewhere in this blog.  On June 28, 2017 we did an MRI on my brain and read the results on the 29th.  My radiology oncologist, Dr. W, came into the room with a not very happy face.  I said "is it bad?" and she said "it's not good".  The first full-brain radiation in Oct./Nov of '16 had done a  good job erasing lots of the original growths.  Unfortunately, it didn't stop the creation of new growths; they were popping up in exponential fashion; very tiny, some less than a millimeter but still dangerous.  So the two docs came up with a new plan.  They needed to find a new med that had more  promising results penetrating to my brain.  They found the perfect drug, which should have garnered an easy approval from my insurance company.  But as usual, they balked.  They said I needed to try a similar drug first, even though Dr. P assured them he thought I was a perfect candidate for this study.  The situation is they need candidates for the study who have the exact type of cancer and mutations, etc. that I have.  No other candidates except those who are like me will do.  They're trying to get a fast FDA approval but they need to expedite the the study.  The copay on the Alecensa is really high, like $23,500 per month.  But the drug companies in cases like this are sometimes willing to offer assistance with the bill since they're trying to expedite approval.

Long story short;  I took the other, cheaper drug Zykadia at the insistence of my insurance plan.  I took it for only 3 days,  5  caps in the morning every day. I only took it for 3 days since that's how long I could tolerate it .  Friday afternoon I started talking and not making any sense.  I was afraid I was having a stroke.  Connie called the Doctor's office and asked what we should do and they said "discontinue immediately.  We'll submit it as a fail and try to get approval for the Alecansa again."  It was Friday, so I had 2 days without treatment; they called on Monday and said "the insurance wants you to try a reduced dosage first."  Five days later, same result.  Yesterday the Doctor's office called and said "We have great news for you!  You've been approved for the study that we were trying for all month!"

The meds arrived this morning by UPS from a Specialty pharmacy.  I take 4 tablets 2 times daily and I really hope they live up to our expectations.  I have a pretty good feeling about it.

If anything else changes that I need to report outside of the timeline, I'll do another breaking news post.

Look for some humor in my next post; just because it's been a while!