August 27, 2015

This week is not going as planned...

well, for the most part. I take pride in using what I refer to as “book end”– meaning I begin with a positive or something that is going well followed by negative and then looping back to a positive. Right now, book ending – may be challenging. Recently, I have experienced so many shitty, yucky, seriously?, what the fuck, can this really be happening, and how the hell did I win the jackpot of “how much can she take” kind of days.  I freely acknowledge that I am definitely more cranky than usual but not to worry, I am psychoanalyzing the hell out of my feelings and sorting out my a-typical behavioral output. Yes, I am a therapist. 

Here I go… I am itchy as fuck! I have a rash that continues to develop in various places on my body. This delightful rash presented first on my left elbow, migrated to my right elbow, then crossed back over to the left side of my body onto my left knee, then crossed back over to right side of my body where it presented on my right knee. The end…but wait, it really did not stop….it is now presenting on the back of my right hand, and as I glance down at my left hand as I type, I see that this rash is now on the back of my left hand as well! I will describe The Wrath of The Rash as a “what the fuck moment”. 

How does one get the itching to stop? You try everything and let us face it I have plenty of fertile rash areas to test different products; five different types of please stop itching topical concoctions – homemade and purchased. None has provided the desired relief that I am seeking. Not to worry though - there is a positive that can be found within The Wrath of The Rash; when I am itching, it feels SO fabulous it is pure delight – awe, I love to itch, yes itch me more, yes, yes!  

The next situation did not directly happen to me yet I was the main attraction: this experience will fall under “Seriously?” As most know, I have cancer and I am dying – yet I am determined as ever to beat the odds and live because that is how I like to roll. Well, apparently, the local pharmacists believes it is their business to question why I have been prescribed large amounts of pain killers. Then refused to fill one prescription citing it “was too early according to the insurance company” (5 days prior to running out –which may be a policy – who the heck knows). Followed by said pharmacist contacting my oncologists’ office to make a further inquiry into “why” I needed the prescribed pain medications. Saving the best for last – said pharmacist, after acting as though I was somehow drug seeking, writing my own prescriptions, and questioning my diagnosis felt as though it was then appropriate to “share the good news” by emerging out from behind the pharmacy counter into the middle of a large store, to pray for me. While I find it thoughtful to want to offer a prayer for healing – It is beyond offensive to question the prescriptions written by the same doctor, ask what my health condition is, contact the office as though I am drug seeking, and then try to make themselves feel better by offering to pray for me??? Yep, “Seriously” that happened.  

“Shitty” and “Yucky” can be combined – my memory is becoming impacted by the chemotherapy. Just have a conversation with me and you will experience it first-hand. My memory is toast. Sometimes I am surprised I know who I am. Ugh, it sucks to lose your memory – after my last encounter with chemotherapy four years ago, I was just finally starting to feel as though my smarticles were returning. Well, they are actually leaving…it is frustrating for me.

Let me finish this with, “how the hell did I win the jackpot of how much can she take kind of days.” After only three weeks of chemotherapy – my body has decided to say STOP! The easiest way to explain it is to say that my immune system is weak and not able to build itself back enough to take another round of poisoning. It is questionable if it will even be ready next week. I know what kind of weirdo gets frustrated that they will miss a round of chemotherapy? This girl! I am trying to knock these cancer cells back enough to prevent an ulceration – which is looking hopeful at this juncture and to shrink the tumors enough to be able to maybe consider surgical removal of some tumors, if possible.

Some of this stuff sounds awesome and promising – but the reality is that right now, any medical interventions are not lifesaving or curative measures; they are simply quality of life interventions thus I must carefully weigh each option as it presents. For example, I could get a shot, occasionally, post chemotherapy to help build my immune system – however, the side effects are not awesome and pretty much suck. It all comes back to quality of life – without any promise of anything positive. Okay, I am going to stop here with all this negative stuff – I have so much more but it is not helpful to perseverate on negative things but it sure feels sweat to off-load them! It is all about the Real Talk for sure!

Let’s look at some super awesome things! I am going to list them and write more in detail later because many of them are in the works right now.

1. Curtis’ fundraiser has raised enough money to allow us to fly four of our Texas kiddos home for a few days to spend time with their mama!
2. Our family will be interviewed on Monday by a TV station – details to follow after the event
3. I am experiencing less pain due to better pain control
4. The tumors under my arm are less swollen allowing my arm to rest more comfortably by my side 
5. Curtis and I spent and awesome night at the coast which was perfectly timed.

I want to thank everyone that continues to send me letters via snail mail. I love when Curtis comes through the door yelling out “babe, you scored again!” Every letter I receive, I will write back to you.

I love writing letters everyday – typically about 6-10.
I love that I have so many people that care about me and who continue to send letters.
I love to laugh!
I love to read how I have influenced people’s lives!
I love to share how others have influenced my life.

Please keep sharing and staying in contact by sending letters. As this disease progresses, my energy level will continue to fall and communication will need to shift toward letters instead of in person visits. I feel so loved and supported right now from all the letters. 

I too want to give a shout out to the delicious meals from our food Angels Elaine Markley and Kim Ragain, not to forget the extra stuff from others like Lene’. Tell you what; Elaine is the best food sign up person you can ever imagine. She brings toilet paper, paper towels, prune juice, sweet treats, fruit, bread, and a main dish! She is the Bomb! Curtis gets downright giddy when Elaine is about to come over. Thank you Elaine for your generosity and kindness, we love that you care for us deeply.

Support Websites: 

Today, I am hopeful~