Maybe.... Finally.... Hopefully!

 Well I made it out alive ya'll!  Happy World Pancreatic Cancer Day 2023!  Last time I wrote, I was getting ready for surgery and here we are on the flip side, 3 weeks out of probably the roughest surgery I have had on this lovely cancer journey thus far! And probably the worst hospital experience..... Sorry KU. 

This time of year is always a little rough on me, as every single one of my diagnoses have occurred in October or November.  And each year I am more grateful than the year before, but it still provides a little gut punch as each anniversary date passes, along with the influx of pinktober celebrations in  your face 24/7.  Sometimes it becomes just a little too overwhelming.  As I have always said, I am so grateful for all of the breast cancer awareness, but sure do wish the other cancers would get even 1/4 of the attention that pinktober receives.  

Anyways, enough of my mini soapbox speech LOL.  And time for an update and a little comic relief for all of you who enjoy a great unintentional drugged out story.  At the time it was terrifying, but now I can laugh about it, kind of.   

I checked into KU Med on Tuesday the 24th of October, changed into the ugly freakin' gown and then started the pre-op parade of doctors, anesthesiologist, interns, surgeons, etc.  Then the one guy comes back in to put the epidural line into my spine.  Gaaaahhh, this is just no fun at all.  I'm pretty sure my back is still hurting where the line was inserted and stayed for 3 days.  But I will not complain too much as this was the lifesaver from what I'm sure would have been massive pain without it those first few days.  They took me back for surgery then and that's pretty much all I remember until I woke up in recovery, happily drugged out of my mind LOL.  I kind of remember my son telling me they were leaving to head back home, but not really.  In fact I don't really remember much about the next two days, thanks to my little friend in my back.  

Day 3 arrives and it's time to "ween me off" the epidural concoction. Now let me tell ya'll, I have had enough surgeries and been in the hospital enough times over the last 6 years that I know exactly what I can take and what works on my pain.  In my epidural was a pain med call dilauded.  This is the pain medicine that helped me through (by process of elimination and trial and error) all of my prior surgeries.  When they pulled the epidural line, I was told they would not give me the dilauded via IV and the only drugs available to me was morphine or fentanyl.  HUH?  I can't have dilauded but I can have fentanyl?  No thanks I told them.  And I also informed them that morphine makes me break out in massive hives.  I freakin' know my body right?  Well these little nurses didn't think so and went ahead with the fentanyl.  And here we go.... my adventure begins.... I start to hear some of my family's voices in the hall.  I begged the nurses to let me see them and I couldn't understand why they would not let them in my room.  Just a reminder, I was in Kansas and did not have anyone there with me, but apparently I thought they had come to surprise me....  The nurses kept telling me there was no one there and I didn't believe them. It was making me crazy!  Then for fun let's add some dogs and cats that were floating through the walls, tons of them, just coming at me.  It was insane.  I think after the animal parade, I finally fell asleep for a bit.  When I woke up I thought I was in an escape room game and freaked out and jumped out of my bed (which has an alarm) and ran straight for the door.  Remember now I had a fresh new 12 inch gash across the whole left side of my abdomen.  The nurses were coming at me and I told them they were holding me against my will and I was leaving, as my naked booty flashed in and out of the lovely gown.  They tried to get me back to my bed and I refused and instead I dialed 911 and told the cops I was being held against my will in an abandoned building and I hoped they could ping my phone and find me.  Guess what happened then.....  6 coppers showed up at the nurses station.  I think at that time I kind of snapped out of it for a bit and had a crying mental breakdown.  At some point after this I finally must have went back to sleep.... The next day I was informed I wasn't going to be getting any more pain meds at all of any kind because of the little incident.... which, by the way, was still happening, as I was still hearing my family's voices through the wall.  So now I'm in a hallucinating state and in massive pain from no pain meds and I finally just told them I wanted to go home and for them to figure out how to get me released.   I was released the next day and my sister came to pick me up.  On the way home I proceeded to grab the steering wheel several times attempting to get my sister's popcorn (there was no popcorn).  I also stomped the floorboard like a crazy person  trying to find my package from our shopping trip (no shopping trip).  And continually yelled into the back of the Suburban at my sister's boys to quit hiding from me and that I knew they were in the car (they were not).  My poor sister.... neither one of us see very well in the dark driving and it was raining like crazy to boot.... I'm not sure how the heck she didn't punch me out LOL! I am also not sure how ANYONE enjoys fentanyl.  I am 1,000 percent positive that I will walk out of any institution that ever tries to give that shit to me again!  The craziest part was I "knew" what I was doing but I couldn't stop myself.  Like an out of body experience.  I understand teaching hospitals have to exist for people to learn but at some point they have to also realize that some people know their bodies and know exactly what they can handle, etc. and they need to listen to the patient.  So my public service announcement for today is just say NO to fentanyl! LOL

I got home and settled in and started the healing process and awaited the pathology reports and game plans for proceeding. Thank goodness since I have gotten home things have been pretty uneventful.  Although the pain is pretty wicked at times.  In the past week I have been back to Kansas to see my surgeon, to my oncologist here in Columbia and a telecall with my oncologist in Kansas.  Overall they are all happy with the results and recovery from the surgery.  As most of you know, they took the tail of my pancreas which had the original evil tumor in it.  They also removed my spleen and one adrenal gland, as during surgery it appeared to have been invaded with the tumor as well as the spleen.  The pathology shows that they got clear margins on the pancreas and the spleen nor the adrenal gland did not have any cancer present.  They also took 25 lymph nodes and unfortunately 8 of them were positive for cancer.  Mixed results but definitely not terrible.  The one really good news portion of the results is that my tumor marker went down a lot!  That definitely gives me a glimmer of hope that this risk that I took may have been worth it! 

It looks like my game plan going forward will be to start a new chemo session the first week in December.  I see my oncologist again in 2 weeks to get all of the details of the next steps in my fight against this monster! 

I want to thank everyone who has brought meals, worked in my yard, called, texted, visited, donated to my Venmo, and most of all for all of the prayers!  I know that they are working and I ask that you continue to send them my way as I head into the next chapter of this journey!    

What Would You Do?

 Here we go ya'll!  Mr. Toad's Wild Ride continues!   Three years ago I sat in my oncologist's office and was told that I had stage 4 pancreatic cancer with metastases to the liver.  I was told that I had 3-6 months to live and to get my stuff in order.  I was also told that I would NEVER EVER qualify for surgery to remove the main tumor from my pancreas.  Therefore, I have been living my best life and had accepted that sooner than later I would succumb to this horrible cancer.  That is just the way it was going to be. 

With pancreatic cancer, there are basically two main chemo drugs that work.  Once they no longer are working, the options are few and far between.  There is also now a pill that has been developed for BRCA patients with cancer that seems to be working quite well.  Even though BRCA has been a biach for me, I am grateful for the mutation in this situation, which has given me the opportunity to extend my life with this new pill.  Over the past three years, I have had 24 rounds of chemo. The first 12 rounds, followed by a year and a half of the new chemo pill. Then when my CA-19 tumor marker started rising, it seemed that the pill was no longer working, I had to go back on the chemo, which I finished in September.  With the tumor marker still continually rising, scans were ordered (CT, PET, & MRI). As per the usual, the CT scan still was showing stable.  But there had to be something brewing somewhere.  So then the PET scan was done, and it was found that my main tumor on the tail of my pancreas was alive and growing again.  An MRI was then ordered to confirm the PET scan findings.  The MRI did, indeed find that the main tumor had grown and it also now is showing another growth of unknown origin further into my pancreas.  So it appears that my first line chemo may be failing.  But there is one good thing that came out of these scans however. It is not showing spread anywhere else except the pancreas (even the liver where the original metastasis was located).  You've gotta take some good in every situation or it'll drive you insane! 

So we were going to have to scramble to see what our next step was going to be, as I would possibly be down to my last option as far as chemo goes.  It was in this very timeframe of all of these scans that I received call and subsequently a telehealth appointment with a surgeon who was given my case by the KU doctor I had seen in August.  I had no clue this was coming and it just about knocked me out of my chair that a surgeon would even want to have a discussion at all.  He said he wanted to wait until all of my scans were in then discuss some more.  At the time I had the MRI left to complete.  So I put the surgeon out of my mind, as per my earlier comment, they DO NOT do surgery on stage 4 patients.  

But hang on, things are getting CRAZY! The surgeon in Kansas looked at my last set of scans and he wants to give surgery a try! I received that phone call and sat in a state of shock for, well let's see here, it's been about two weeks now LOL.  For 3 years I've had it ingrained into my head that when the chemo stops working I'm done for, but now I'm being offered a slim, but yes, a chance at a possible longer life.  

Then the panic sets in and the questions start whirling around.  Do I take this, more than likely, once in a lifetime opportunity, and take a chance on this surgery or decline and keep moving forward as I have been.  I needed guidance, second, third, and fourth opinions!  Anyone who could validate my feelings and opinions. I ended up with three very trusted opinions on the matter and two out of the three said to "Do It"!  And while the "I do not recommend this" opinion keeps popping up in my mind, this I do know for sure..... I have been praying non-stop since the day I got this diagnosis for a miracle.  For God to cure me of this cancer and to take it away.  What if this is the way he is going to do that? What if this surgery, that is never offered, that is being offered to me now, is the way that I am going to be healed? What if I have to suffer through this one more trial and since I followed his lead I am going to be rewarded? I feel like all signs are pointing towards accepting this surgery and pray that it goes well. After all, the only other option is to start my last line of chemo and see how long it keeps me alive. So I don't think I have a lot to lose at this point. Right? 

And so the decision has been made.  Surgery will be in Kansas on the 24th.  Yes, that's 1 week from tomorrow.  I will be having the tail of my pancreas and my spleen removed.  I will be in the hospital for probably 5 days and home recovery of 6 weeks.  It is an open surgery, so I will be cut along the bottom of my left rib cage, with staples and probably drains.  The tail of the pancreas controls your insulin so it is possible I could become diabetic after surgery.  There is also the possibility of him opening me up and the cancer has spread to places not shown up on imaging.  At that point they would just close me up and not do anything.  This is also not a fully curative surgery either, as there is another mass showing up in imaging further down in my pancreas head that the surgeon says he cannot take.  The imaging is not clear on what exactly this mass is, but the surgeon is hopeful that if we get the "main" tumor that any others in the pancreas would respond to chemo after the surgery.  So yes, there will be more chemo after surgery for anyone wondering. So my friends, what would you do??  As always, I know ya'll are totally jelly!  LOL! 

I told the surgeon on the call the other day, eh I've had a double mastectomy so I'm kind of familiar with it all.  To that he said and I quote, "oh this will be way worse than that".  Lovely.  After my mastectomy I had my fiancé to help me out.  I was basically not allowed to do anything the first 4 weeks after surgery.  So here I am single and alone this time.... One of my close friends said the other day, "you've got to ask for help and let people help you and quit being stubborn".  So my friends here I am, asking for help and I will be glad to let you help in any way! I've already arranged for a lift chair to be here when I get home from surgery, which will help out sooooo much!!  Thank you Healing Chair!! This will be your third time saving me from massive pain!! 

But for realz, I am totally freaking out, terrified, and nervous, but I am also hopeful.  Hopeful that I get several  more years of family, friends, travel and fun time! I truly believe there is reason I'm still around and I hope to keep on fighting for many years!  Please, please, please keep those prayers coming in hot!  I need as many as you have to give this time!  And I'll see ya on the flip side! 💝

Road Trip Ramblings

Well I took a little road trip on Tuesday over to the great state of Kansas (boo Chickenhawks LOL).  My oncologist here in Columbia wanted me to see one of his colleagues at the University of Kansas Cancer Center, so I obliged him and went.  I forgot how cathartic it is to set the cruise on 80 and crank the tunes up loud and sing like a crazy fool!  Although if I've said it once I'll say it a thousand times, you couldn't pay me enough to drive in that big city traffic after work every day.... no freakin' way! 

It's funny how memories pop into your head when driving a somewhat familiar route from the past.  As I got closer to KC, the signs for Lee's Summit popped up and it took me straight back to the days when I would come to Lee's Summit to see my baby boy. He moved there right after high school to go to college and play soccer.  So many emotions went through my mind.  I will never forget the day I moved him into his first apartment.  We went to the grocery store and I stocked him up on all his favorite foods.  Helped him unpack a little and then I had to leave him there. I cried all the way back to Moberly that day.  Over those next four months, I would go to work on game days and then would change into my MCC blue and drive that road to see my baby boy play college soccer then drive that path back home so I could work the next day.  Those were some long nights but so worth it!  There was also several weekend games and we had some great long weekends spent in the little town of Lee's Summit that fall.  What great memories that came back to me yesterday on my road trip! 

I made my way over the Missouri line into Kansas and on to the doctor's office.  Now I'll be honest, I have massive trust issues with doctors in big city universities.  If you have followed my full story you know that I had been misdiagnosed for almost 2 years by one of those guys. But I have full confidence in my doctor here, which is why I agreed to go to this doctor.  I checked into the center and was called back to see the doctor.  He seemed very knowledgeable and we had a great chat, but in the end he said he didn't have anything better than the treatments I was already receiving here in Columbia.  He said he would keep me on the logs and would check in with me if any trials pop up that might be a good fit.  But he also stated he didn't think there would be anything soon. Which I already kind of knew because I learned the hard way that I had to do my own research and be my own advocate.  We discussed some possible future moves I might want to take here at home, so I guess it was not a total waste of a trip.  I find it comforting to know that another doctor validated my treatment protocols here and why I have 100% trust in my current care team.  Plus I now how another top notch oncologist in my arsenal for future possible endeavors, God willing!  

On my way home, as always, I hit up my favorite Taco Johns.  I know, I know, there's one in the mall.... but it is not the same as the one in Odessa.  For me, again, it's about the memories.  The Odessa Taco Johns takes me back to my childhood every time.  In my hometown of Moberly, my sister, our neighbors, and I used to ride our bikes to the end of our very long street, which came to a T at the local Taco Johns.  I cannot begin to tell you how many adventures we had, riding our bikes with probably $2 in change in our pockets for a good ole taco burger and some potatoes on those hot summer afternoons.  Ah sweet memories. 

So after my long memory-filled road trip, this is where I am on this journey..... I will have another CT scan on Monday, the 6th and then scheduled for my 10th of 12 chemos for this round the 7th-10th.  My tumor marker number continues to rise despite the harsh chemo.  Normal is 0-34, I am now at 1,491.  All of my doctor are in agreement that this means the cancer is growing, but still too microscopic to be shown on the CT scans which continue to remain stable.  I am hopeful for the same stable result again on the 6th.  If that is the case, the new doctor in Kansas recommended that I request a PET scan which will, more than likely show where the cancer is growing.  He then said it might be possible to go in and use radiation to zap the microcells.  All of this, of course, is VERY tentative, but praying hard that all will go in a positive direction.  All prayers are welcomed and so very appreciated!  And for now I am so very grateful for every single day on this side of the dirt.  I try to live every day to the fullest and will continue to fight like crazy, travel, hang out with my friends and family and my furbabies as long as I am able to! 

It's Been a Long Winter! TGFSS!

 Thank God for Spring and Summer! 

It's been a long time since I've updated huh?  I guess I was deep into my winter blues and had a little writers block.  I've had some fun and also had some setbacks over the last few months, but I'm still here fighting like crazy! 

December was an amazing month.  I spent a week in Anna Maria Island, Florida with my very best friends. We took a private boat tour to some islands, watched the Christmas parade, walked a million miles on the beaches, but most of all laughed with and loved each other! Christmas was amazing with my family.  We celebrated at my son's house and he learned the ancient family secret of making noodles from my mom.  We played games and just had an amazing time.  I was feeling great and trucking right along on my chemo pills. The trips and gatherings with my friends and family are what keep me motivated and gives me the will to keep fighting! 

Then the new year came in like a lion and hit me with the gut punch I knew was coming. I was just hoping and praying for a little more time.  My tumor marker had continued to rise and was now to a point where my oncologist felt like it was time to start back on chemo. It seemed like the cancer was returning microscopically.  It was decided to attack the little cells before the big cells attacked me.  

February 1st - Back to the chemo room and the routine I had pretty much gotten used to two years before.  Six hours in the chemo chair and then I wear a 48 hour pump home with chemo.  This first round back went well and after about 5 days I was feeling "okay" again.  On my bounce back week, we celebrated my son's 30th birthday at CC's.  I'm still in disbelief that he can really be 30 years old.  Time flies so fast these days!  I got to watch the Chiefs win the SuperBowl with a bunch of my friends I hadn't seen in forever! That was a fun day!!  I went out to the "Burg" and saw a favorite band play and also celebrated my best friend Auggie Doggie's 5th birthday with a big cookie and some toys.  

February 15 - Chemo #2.  No go.  My white count and neutrophils were tanked.  At this point, we agreed to change my chemo rounds to every 3rd week instead of every other week, in hopes that it will still bring my numbers down and give me a little more quality of life.  I am definitely ALL IN for two good weeks instead of one as long as the chemo does the job! 

February 22nd - Chemo #3.  My numbers were still questionable and barely made it in the chair, but thank goodness I did!  And then the shit show began with my last bag of chemo called oxaliplatin.  I started turning red, which means an allergic reaction to the medicine was occurring.  The amazing nurses at MCA got the reaction reversed and consulted my oncologist on how to proceed.  This particular chemo is known to be the one that really does a number on BRCA related cancers, so it is very important that I somehow can continue to receive this one.  It was then that I learned a new word to add to my ever growing cancer treatment dictionary - desensitization.  This would be the fun new procedure we would try at my next chemo session in 3 weeks.  I bounced back again from this round and had dinner with my besties and watched the Moberly Greyhounds win their Region 16 championship game in Jeff City with my daddy.  National Championship tournament bound.  It reminded me of the good ole days when the Hounds would make it to Hutch and our parents took us out of school so we could go and watch them play.  The best time was when I was in high school.  There was a whole group of avid followers of the team and most of them had kids our age, so we were the "special" ones who got to get out of school to go watch basketball and, of course, sneak out of our hotel rooms to go party with the team. You know who you are - LOL  That was a fun year in Hutch! 

March 14 - Chemo #4.  Desensitization.  This adds another day to my already long chemo week.  On day one, desensitization day, I arrived at 8:00 in the morning, got my labs drawn, saw the oncologist, and then off to the chemo room for a VERY long ass day.  Desensitization is where they drip a bag of chemo which would normally take two hours to complete, over 6-8 hours instead.  The chemo is set to drip at an extremely slow speed in hopes that my body will not have an allergic reaction to it.  And although this made for a very long day, it worked thank God!  The next day I headed back for day number two and got my other bags of chemo, then home with the 48 hour pump.  On Friday, I woke up feeling like I could not move a muscle.  I was due back at the clinic for the pump removal and fluids, but really didn't think I would make it.  I pulled myself up out of bed and got dressed and drove to the clinic.  Slept most of the two hours of fluid intake and drove back home when it was over.  I sunk into my bed and drifted off into a fitful 24 hours of sleep and feeling like I was going to croak! Thankfully by Monday I was finally feeling alive again, just in time to get back to work.  This was by far one of the roughest chemo sessions in my 5 year fight I have experienced.  I'm not sure if it was the extra added day or the fact that my mom wasn't here to take care of me.  But I do know that I will not go at this alone again if she is not able to be here.  Miss Independence needs to learn how to ask for help!  

Which brings me to tomorrow.  Chemo #5.  Same schedule as the last one.  I would be lying if I said I wasn't dreading it terribly!  But the alternative is not an option, so suck it up buttercup and into hell week I shall go like a warrior, fighting all the way!  I am so very thankful for the weekend, as I was able to keep busy and keep my heart full.  I got to see my nephew's band concert on Saturday, have dinner with my family, and visit my 99 1/2 year old grandpa, who is still as sharp as ever.  Again, why couldn't I have gotten those genes?? #FUBRCA2!  And yesterday was nothing short of amazing.  The weather was perfection and my new Jeep club gathered and paraded past a new breast cancer fighter's house who belongs to the Jeep club. We brought flowers and gifts to her as we drove by.  This made my heart so full and happy. How supported she has to feel! We then went over to Logboat to socialize a little, even Auggie Doggie got to come along and got to enjoy lots of lovin.  💕

So I'm back in the thick of it and as always, asking for tons of prayers for the chemo to once again kill the cancer cells and help to get me back to a place of being able to add some years onto to this crazy, beautiful, awful, fabulous life of mine!