Latest results on PET Scan and where we go from here.

Good Morning family and friends.  I would like to apologize for not getting this out sooner and in the right place.  If I am diligent, everything should end up in one area (here) to simplify things for all of us.

I was taken in right away to see the oncologist and he did the standard checking me over for edema and lung sounds.  The doctor gave me a bare rundown on what was discovered and stated that he wanted to discuss the results with a college at the Rochester Mayo Clinic that specializes in lung cancer…which took a lot longer than I had hoped.  Thank God my family is patient and waited by their respective phones for the go ahead to call for all of the details.  In an attempt to save time and energy here I am going to pull a quote from the doctors notes instead of trying to paraphrase it

“I did discuss at length with one of the physicians in Rochester in the lung division potential treatments for Kristen. It was decided to go ahead with Taxotere and have her sent over to Rochester. Given her age and the course of this lung tumor, there is a good possibility that she has a driver mutation, and I think the efforts will be to see if we can identify a mutation for a unique treatment for this young woman. Obviously on her PET scan that was just done, she has progressive disease in the liver, and so the carboplatin and Alimta was not very effective, and we need to press forward to see if we can find effective alternate treatment. I did discuss this at considerable length with Kristen who had her sister present by telephone. She agrees to go ahead as outlined above.” ~ Oncologist Mankato

It looks like there is a strange plan afoot for scheduling the Rochester appointment.  They want to see me after the first 2 Chemo treatments are done but before the 3rd one starts.  This involves math 🙁  So I need to call them back and schedule the appointment when I can figure out what what days fall into their criteria.

We did start the new Chemo on Wednesday and I am feeling pretty darn loopy and understand what they mean by Chemo fog. Thinking has become an olympic sport and I think Webster’s has redefined what exhaustion means.  I received a piece of good news and met a man that manages wheelchairs over at the American Legion, and he was able to drive me over a chair that Is nice and light weight and can use around the house to ease up on the back pain and which seems to be helping.

On that note, a nap is calling me from down under and it’s time..Everyone have a wonderful weekend and much Love!!

Kris

 

August 19th – Test Results Day

Well, god willing, today is the day we get the definitive test results on where my chemo progress or lack thereof sits. Seeing as this has been moving at a snail’s pace for months, the hype has been building up.
Thank you all for seeing me through of this.

Miraculous News ( short and Sweet )

Ahhh, everything has grown so big and intense.

This is a heavy Doctor week for me so I am running on fumes, but wanted to let anyone and everyone know that I had a brain scan yesterday and full blood work.  My chemo was held until we finish the MRI’s on Monday, but what did show on the brain scan was that the tumors in my brain have reduced in slightly in size and the edema surrounding the area has finally left the building 🙂

We are all on the moon.  This is one small unexpected surprise, OK not small…It feels pretty huge right now, but there is still such a long road ahead so I’m trying to stay sensible.

                                    Thank you!!!!!  Your love and prayers, you patience with my ramblings and sending of positives vibes, your indispensable advice and help when I stumble, get tired and there you are with a hand to help me up.

All your messages have become so precious.  They fuel my imagination,  and the positive reinforcement and great feedback encouraging my writing  has lit a fire in me to continue.

More in depth writing later, Family will be here from out of state soon!

Love Kris

 

 

A remarkable kindness and generosity and it’s powerful effects

Good morning family and friends  It will be another beautiful day today and It feels like a perfect time to break open some coffee and do some deep reflection and processing.  This requires me to open up and talk about things that I would avoid almost completely as they are candid and raw and not easily solved.  I have found a work around for this by just keeping the specifics dry and and just informational.

  I know that as we all move deeper into this story, the things I would like to share will have to become uncomfortable as I am challenging myself to see and learn what is real and true, and your love and strength give me the courage needed to face these dark things.  Again, “thank you” and “I love you guys so much” are such horribly ineffective words to use for this gift you give me day in and out.  The ability to speak candidly without fear of judgement with unconditional love.

  July 31st 2015

  My day started off very early.  I had a 7:30 appointment follow-up with my family doctor to recheck the cellulitis that seems to be intent on winning this tug of war game that has been engaged.  I am very happy to announce that I have pulled into the lead and taming that beast to be an ugly bruise instead of the monster intended.  The hero of this story is again, my neighbor Ken and his beautiful wife.

  It has been catch up here at home since I was released from the hospital.  That this is my 6th release gives you some idea of just how much time is going into this necessary function.  I was too late to order a medical ride for last minute appointments and my car alternator has been broken down and unusable since May.  My superman neighbor Ken comes to the rescue.  Again.   We zip up to the doctors and are in and out very quickly by the grace of god, as the last thing I wanted was to leave him waiting.  As I get in the car I realize that it is a Friday and that I am due to get my temporary IV in my arm a good cleaning and flushing and this needs to be done weekly.  I turn to Ken again and now feeling anxious and sad, ask if he would be able to run me up and drop me off at the hospital at the cancer ward.  He smiled and said of course and assured me that he had no pressing plans and is more than happy to help, reminding me again that this is not new ground for him, and that he is enjoying being able to help where he can.  * And of course, I am now a sobbing mess because my emotions are still all over the map while I continue to heal.

So 6 hospital stays, and maybe if I round off, I have spent a cumulative time of 25 days at actual home.  In this time, I have applied for disability ( and approved! ), and county services, our gas was disconnected and my electric only a few days behind. My county worker was invaluable in this department and was able to set it up with the Salvation Army to get our gas/electric back on.  It took a week and we were pretty stinky but what an exciting wondrous thing when it was on and heat became not a utility but a good old fashioned miracle!!!  My children are clueless when it comes to opening mail and looking inside and they don’t pay bills per sae as they just gave me a lump sum every month or I would hand them a bill and tell them to pay it.  The learning curve here is steep, and I cannot recommend enough that everyone teach their children well how to manage a finance! During my 3rd hospital stay, my son blew out a tire and totaled his car. His brother and he worked with the landlord to replace the roof on our house in exchange for rent for 3 months to get us some real relief while waiting for medical results and paperwork that moves at a snail’s pace through the system to fix cars and provide every other thing that is required in order to keep your head above water.

Adding one small piece, which I really wasn’t going to do yet is the mental effects this has had on my family and I.  I do this now because Josh and I finally had a very productive talk about it and I feel I understand it a bit more.  To put it very simply, I went from being a lazy, procrastinating slob to ADHD 10 second Tom that gets sidetracked by squirrels.  I go room to room cleaning and organizing and starting projects that I forget as soon as I move to a new room where I start a new project and forget as I remember the last project and change rooms again.  I find a tremendous amount of comfort in routine, relish doing dishes and have discovered the joys of laundry.  ALL the laundry….every day.  While I am mostly having a great time, and moving constantly to keep those clots at bay, I am straight up freaking my kids out as they basically have to keep an eye on everywhere I go to be sure I haven’t or left the water running and flooded something or started cooking and forgot… .which lastly brings up the subject near and dear to my heart (lol) :  Food.  I have discovered to my joy AND dismay, that cancer makes you starving.  One cup at a time you are either ready to eat your arm off or so full and nauseous you are sure you will never eat again. So this kind of spells out what the actual in and out of life has been like for us in between just trying to relax and regain my strength.

*Now to the amazing, fun, mind blowing, profoundly heart wrenching part that stars the angels that are hiding in plain site next door.*

Ken and I start heading out of the parking lot and over to the hospital and he stops and says ” Oh, I have something for you”.  He reaches into his bag and pulls out 2 pieces of paper.  On one is a $50 gift certificate to Hyvee , a local grocery store, and the other a $50 gift certificate for kwik trip, a local gas station.  All I could do was stare.  And then poor Ken, I started sobbing. Or maybe hysterically crying, runny nose and  all.  Ken explained to me that he had been talking with his church about my family and situation and the problems we were having with my car and had wanted to see if he could work with the church to help us replace the alternator  so it  would take some of the stress and worry off of my shoulders and be able to dedicate more time to healing and less time focused on trying to solve every problem.  *Still shooting water all over his passengers side*  He then told me that they also discussed my gas and electrical situation and that I had applied for every program available and that though approved for everything, the question of when it will actually arrive is a completely mystery which I hope will one day soon be solved.  Anyway,  it looks like they will be able pay off the outstanding disconnects given I get the bills to them.  I am struggling to stop crying and be able to speak and while composing myself Ken tells me that his church pays out a lot of money to help people that don’t really fit into the criteria that defines a life altering event in which the aid offered will actually make a huge, momentous positive change.  He stated that they look for and love to have the opportunity to be in a position  to be able to do this.

Now, I am finally under emotional control…ok, almost under and take the gift cards with my hands shaking.  I have been nursing this stress for so long I eat sleep and drink it and finally felt a moment where I could breathe, and put the burden down.  I thank Ken and wife again remarking that the amount of work and time and selfless generosity to help us is so far above and beyond anything I have ever known I feel horrible I can’t put it into words.  God Bless that man and his humbleness we finally get on the road to the hospital with his last words on the subject which were ” This has been no effort at all for me.  I am the lucky one that gets to be the one that is able to give this to you.  I just talk to people and ask questions, and it helps try to make your life a little easier so that you can focus on actually healing instead of hurting yourself more.”

A remarkable kindness and generosity and it’s powerful effects.  Just saying I have been nursing this stress does not nearly describe the actuality.  I sleep 2 hours a night and if very lucky, I might get the same in the afternoon.  My ADHD dance starts at 2:30 in the morning and I stay as busy as I can so I don’t think about how bad things went so fast, how I’m going to cover us until my financials come in, and the biggest fear, that my mental facilities won’t return and I will stay in a mental/verbal limbo where communicating with the people in my life at best is challenging and at worst, filled with fighting and misunderstandings, tears, hurt feelings and the silence that follows.

A remarkable kindness and generosity and it’s powerful effects.  I slept for close to 12 hours over the course of yesterday.  My foot did not look like it was about to fall off.  The pain in my groin and back and hips stayed sleeping longer than the rest of me did.  I found myself spending a wonderful evening with a very good friend,  being silly and laughing with every fiber of my being because I am once again present and mindful of what a gift life is and no matter how low the lows there is beauty and kindness in the world and a wonderful couple of people that live across the street from me who realize that change is possible and it starts with a conversation.