She Needed Surgery

I had too great of an induced nap this afternoon; I'm writing this at 2:17 AM.

I was able to erase some crazy anxiety and frustrations about my treatments which I've dealt with ever since arriving in DFW.  I had surgery today to remove my despised and degraded old mediport and replace it with a sparkling new, accepted POWER PORT.  I am now in the club. [Fingers crossed!]

The whole thing went pretty well today. It started off with a good omen: my mom was able to drive me and give support, prayer, and love.  What a blessing.

We did have so wait later than my scheduled time, but that ensured that no one would call "cancelectomy," since I technically ate breakfast and took a pill in the originally scheduled eight-hour window.  It was nice to finally move out of the waiting room, where so many people were eating, lunch AND snacks.

I did have some IV trouble, though.  Since this procedure was to remove my port, using that was, obviously,  not an option in this case.  My assigned nurse, Kim, was mostly sure she'd found a few good veins in me, but after hearing my concerns, she referred me to the "best poker in the place."  I cannot recall her name, as she was twice unsuccessful on my body.  In came Rochelle.  She took her time and got the job done.  I was grateful for the lidocaine, which I question the absence of in so many of my prior IV failed attempts.  Successful stick, CHECK.

Next, my surgeon, Dr. Birdwell, came in to go over the procedure.  We had discussed possibly replacing my port and changing positions from right to left for the new one.  I am fine with each, and he was satisfied with just waiting until investigating possible scar tissue, which might make it difficult to place a new port in the same spot.
Mom was really impressed with his persona.  I wasn't surprised.  After all, he IS an Aggie.  [For those of you who have been here since 2013, my plastic surgeon from Houston, Dr. Boutros is an Aggie.  Two Dr. B's, both Former Students of my school.  Can't got wrong with that.  [There was also a student who I allowed to watch in on my surgery.  She is a Red Raider.  I'll allow it.]

Then came the Family Business.  My anesthesiologist came in to question me.  He promised to let me have a great nap and glossed over my breakfast, since my husband is a CRNA.  He also hooked me up with a Scope Patch, for my nausea.  Versed's on board.  Ready to go!

Suddenly, people were waking me up and asking me to drink cranberry juice.  I wasn't quite ready to give up that deep sleep and warm blankets, but all good things must come to an end.  Dr. Birdwell came to visit Mom in the waiting room, praising me as "healthy."  [HA, except for that cancer and borderline obesity!] He was able to add a new Power Port to my right side, eliminating the need for a different scar.

We made it home quicker than expected, and I recovered fairly well from the whole thing, after some food, of course!  The fresh scar does not seem to be painful today, but the tube placement in my neck is giving me problems.  It feels like a pulled muscle--hard to turn my head from side-to side without discomfort.  Also the Tylenol-3's don't cut it.  Stephen actually questioned what I was thinking, even picking those up from the pharmacy!  And, just when I told my pain doc that I didn't need such a high amount of Hydrocodones!

I'm grateful this is done.  I'm grateful I feel better today.  My voice seems to be returning to normal after what seemed to be a combo of allergies, sore throat, cough, and sneezing.  Perhaps I can cut out much of the chastisement I have received about my old port, and we can all just start getting along! We're going to need to, as we go into another battle in this war.  

 



 

PET Scan Initial Results

I was sitting in a pew at church, head bowed, not feeling well.  Leaving early definitely crossed my mind, as a massive headache began to creep in.  It also seemed as if my youngest son had passed me his cough, scratchy voice, and runny nose, or maybe it was related to changes in weather, thanks to my itchy eyes and multiple sneezes.  I remembered my purse supply of medical masks and put one on, to prevent me sharing possible germs to any others.

Understanding only a few of the symptoms of my newest diagnosis, I did have to chuckle a bit.  My bladder doesn't seem to be as tough as it once was and neither does my intestinal system.  I have felt a lot more blotted and gassy lately, even after giving up Dr. Pepper!  With these *fun* symptoms, perhaps I will be destined to become the 40-year-old, blue-headed lady who farts in church!

Then, I glanced a notification on my phone from MyChart, my medical app, which said "You have a new test result."  I thought about not checking until going home, but couldn't wait.

The news was not good or comforting.  I scanned through the document, and noting some changes from the original scans that caught this new cancer growth.  The PET showed additional growth since November 1st.  I don't want to post the entire exam findings, but this is the summary.  I couldn't hold back the tears, especially as I watched Stephen reading and his head-nod, which confirmed my impressions: it's bad.  

As I looked around at faces of loved ones, tears ran down my cheeks.  I soaked through my masks.  I didn't feel ready for another long and tuff fight.  I wanted to feel sad a frustrated that this was happening again.  I thought, for a moment, that the curse of recurrence in the odd-numbered years might have taken a break.  I was sad when I spied the eyes of my boys, who have mentioned how sad the news of this latest diagnosis has made them.  I had a hard time concentrating on the messages shared from the pulpit.  Even though I have a testimony that God knows me and loves me, watching over all, this news hit me hard.  Even though I still have hope and faith in Christ, I don't know if this is the time for the end of my mortality.  I worry for my husband and child and extended family.  I don't want them to have to suffer the loss of wife, mother, daughter, sister, or friend.  I have not been so emotional over cancer in years.  It was definitely time to go home and rest, looking forward with hope to my meeting with Dr. Cole and review the results and my options.

PET Scan

I finished the third test required before I meet back with Dr. C about my battle plans.

I REALLY miss my PET scan team from College Station.

Again, this place made me pee in a cup.  I must be a busy 40-year-old, since they could not use the results from FIVE DAYS PRIOR!  I am getting REAL busy and MUST prove that no immaculate conception occurred since my CT.  I did insist on the nurse giving me gloves so I wouldn't pee on my hand.  Progress?.

The reward came in another *delicious* vanilla shake.  I hadn't been able to eat or drink anything else for five hours, so at least it kept my mouth from being totally dry.

The whole place was running VERY behind, so I had to wait, and wait, and wait, and wait, AND wait!!!!!  FINALLY I was called back to a room, where I could wait some more, while watched tv.  My nurse came in to introduce himself and ask all the questions.  Then, he prepped me for an IV.  He missed.  He missed again.  He came in with a heating pad to try to get my veins to wake up.  Two more nurses tried, with no success.  They called to have a nurse come access my port.  Guess what?  She gave me the third degree about this port and complained that she hadn't brought the proper stuff with her, but she was FINALLY able to access it.  I FINALLY got the shot of "plutonium," so I could wait another 55 minutes to let it infiltrate my body.

FINALLY, the 12 minute scans were over, and it was almost time to go home.  All that needed to be done was to take the needle out of my port.  The original nurse who accessed it was with another patient, so a different nurse was called in.  She was even more inept than the others.  She basically ripped the plastic off the area, literally ripping my skin away.  Without asking any questions, she assumed I had a Power Port and tried to click the needle and pull it straight out, causing crazy pain and blood on MY FAVORITE WHITE T-SHIRT!!  "Do you take blood thinners?" she asked.  "You're bleeding everywhere!"  [Maybe if you knew what you were doing, that wouldn't have happened, and I DO NOT take blood thinners, Moron.]. When I told her I didn't have a Power Port, then came the standard excuses:  I didn't know it wasn't./What is it?/No one told me./I have never worked with anything else./I don't think I can take it out./All the other times, the needle just pops right out.............etc.  When she hurt me for the last time, I just told her to stop and leave it in.  [Stephen could just take it out later!]. She went into the hall, calling the other nurse for instructions, and FINALLY MANAGED TO DO HER JOB!!!!!!!!!!  I was not happy with the day......tired, hungry, bloody, bruised around all the needle points, tired, and hungry.

FINALLY, it was time to leave that place,



WAY LATER THAN WE SHOULD HAVE.  [Procedure delays, nurse incompetence, and waiting for port access/de-access.] All this led to RUSH HOUR TRAFFIC.

It was not the worst day of my life, but one of the worse in this cancer battle, for sure.  I'm hoping some things will change a bit when I have surgery next week for a new port.  

CT-Guided Biopsy

The second scan is now complete.

I have had plenty of CT scans in my cancer life, and I have had a biopsy that was much worse than I had expected at the very beginning of my breast cancer diagnosis, but I have never had a CT-guided biopsy.

I was not sure what to expect.

Sadly, I expected the worst.

However, the first tech was able to put in an IV on the first try, and with VERY little pain.  Next, a scan was performed, to check for the location in which to take the biopsies.  After the scan, a large, grid-like sticker was placed on my chest, and another scan was taken.  [The grid showed up in the scan.]. After validating the correct entry point, the tech drew with purple marker to show where to collect the tissue samples.

It was then time to officially begin.


I was promised a sedation in which I would not remember the procedure.  That promise what not kept, due to the nurse only giving me the minimum amount of versed and fentanyl. I kept telling them I had been doing this since 2013 and needed more.  They didn't listen, so instead of a quick nap and forgetting it all, I am able to explain the procedure here.

Hopefully, the results will help us understand the best treatment options for moving forward.

Count Your Blessings + Labs + Dr. Cole + Last Herceptin + Zometa

So amid the conflict, whether great or small, do not be discouraged; God is over all.   Count your many blessings; angels will attend. Help and comfort give you to your journey’s end.

Count your blessings; name them one by one.

Count your blessings; see what God hath done.

We are in the season of thanksgiving.  I have much for which to be grateful.  

After a particularly difficult Friday, I got back on the horse and headed down to have labs taken Monday morning. I had a smile on my face, being with people who know my face and my name and that my port is not something to complain about.  I also shared the story of my annoyance with having to pee on my hand in a cup in order to prove that my signature stating that I am not pregnant, complete with verifiable proof, was not valid enough for "hospital policy."  

She laughed along with me, but also made me feel validated.   And, when she noticed that the ordered tests on the blood she had just drawn (from that very port that had been declared unusable 3 days prior) included one for pregnancy, she instantly became one of my advocates by asking me if I actually wanted this test done.  When I told her to make a note that I would only allow this test to be performed if it was accompanied by a million dollar bet beforehand, in my favor, she laughed and added a "patient refusal" to the orders.  "When people are giving you a difficult time, know that you have other people in your corner," she promised me.  

Fueled by the love from my oncology home base, I had an incredible rest of the day, having the energy and ability to accomplish almost all of the 17 items on my to-do list. (Still haven't gotten around to making that banana bread!). It was a small victory and one that was truly needed after a rough weekend.  

Fast forward to Tuesday and my regularly scheduled appointment.  (I had to make the trip for just labs the day before because the pharmacy is currently in renovation mode.  That means that my clinic cannot mix drugs on the same day as infusions because they have to be mixed and delivered downtown, often with specific stats in mind.) Before I could even get into an infusion room, I met with my doctor.  

 I had a list of questions for Dr. Cole.  First, was:  "Do you have the results from my scans?"

"Yes.  And, they're not good." 

There came the sinking feeling I've experienced a handful of times before.  

Cancer is back.  

The good news is that my brain is still clear.  My chest is clear.  My bones are still stable.  The pain in my sternum and under my left breast did not even register in the scans as anything new, and are probably just areas that have been agitated by my sleeping positions or clothing choices.  

The new, concerning spots are in my abdomen and bowels.  The few I could truly make out on the images of the scans are 1) a spot just outside my liver in the peritoneal space, and 2) several suspicious lymph nodes.  For those of you who are actually trained to see these as sections of my body and not black screens colored over with a white paintbrush or erased in certain places, here are the photos from my phone from the computer screen in the doctor's office.  

I asked Dr. C how concerned she is.  is this terrible?  It is an easy treatment?  Is it my death sentence?  

As if often happens when I get this news.....those answers couldn't be given right away.  There are at least three things that must be done before she can make a plan.  

1. Receive results from a blood biopsy that she ordered to be taken before my infusion.  (This test will hopefully identify markers/receptors on this new outbreak of cancer.  There is a possibility that I may no longer be her2+, as several of her patients who were previously labeled that way now show up negative.  Perhaps, after so many treatments of Herceptin, the cancer got smart and mutated, making it useless to treat with Herceptin at all.  
2. Schedule a PET scan.  This will give more information as to the size and frequency of irregular areas, letting us know if the CT and bone scan missed anything.
3. Schedule a CT-directed biopsy, I'm assuming of the irregular lymph nodes.  

The results of these tests will give me treatment options.  

1. If I am still her2+, there is a trial for a new partner drug for Herceptin that looks quite promising.  (It seems that everyone I have told about this new diagnosis immediately cursed BCBS for denying the partner drug, Perjeta, which I had been taking up until this June.  I didn't even register that fact amongst all the talk and explanations from the scans, etc., but it was a hot topic among my warriors.  The first reaction, in fact, which led me to recall that my last scans, which were clear, were taken in July, after which I had four more doses of Herceptin without the sister drug before Friday's discoveries.  The good thing about this option is that I am familiar with the side effects of Herceptin and am assuming that the additional trial drug will pretty much follow suit. The bad thing about this trial is that is would all have to be done downtown, requiring someone to drive me for everything.  
2. The other options are more vague.  There are several more powerful chemotherapies that I have not used before.  We would consider those options after receiving more information from the tests.  The good thing about this is I could most likely continue my treatment at Dr. Cole's office.  The bad thing is I would be much more sick and lose my hair, yet again.  But, how many people can truly say that they have grown their FIFTH first ponytails?  

I complained about all the small fires that I always seemed to have to put out in this battle, tired of fighting all the things, all the time, with my last post.  However, after a Saturday Pity Party, I was reminded in church on Sunday that I needed to remember that I am not fighting alone.  The words from our opening hymn (the top of this post) filled me with comfort and hope, reminding me to be strong and be grateful for God and His loving care over my life.  This is not only my battle, but one in which I have an entire army of warriors--both earthly and heavenly angels--supporting my cause.  

Beyond that, and most importantly of all.....it is not I who has the strength on my own to fight, GOD IS OVER ALL and it is in His strength that I will be able to fight and face this new challenge.  (And, it's boot season, so.....time to get on boots and get to kicking cancer to the curb!)      

  

 

Last Quarter Scans

I'm tired.


I'm actually tired because of leaving early for scans today and not sleeping well after an AMAZING Halloween, but I'm also just tired of always having to fight for medical care.

First, I am BEYOND tired of dealing with the amount of time I spend on the phone trying to fight for my health or put out fires.  Whether it's insurance on covering scans or treatment and the on-going *discussion* of how they seem to understand more perfectly from reading paperwork what my body needs or does not need better than my own doctor(s).  There's time spent trying to reschedule appointments which were scheduled without consulting me on my availability, like my entire life simply involves waiting around, counting the minutes until I get to go downtown again and see medical staff!  I have other responsibilities and more on my calendar than just cancer treatments.  I'm tired of not being consulted by the doctor's office beforehand, which means I have to spend hours and hours as a patient trying to correct those mistakes, if there are even appointments available by the time I find out for rescheduling to be possible at all!  It's exhausting.

I'm tired of having to remember everything about this fight for reference to my nurses or techs.  Have you had a bone scan/CT/MRI/PET scan/ECHO before?  When was your last scan?  Where was it?  Isn't this why this hospital system is connected and all my past scans/images have been uploaded?  Can't you access that information because I'm your patient today?  My brain is full of information and memories about cancer treatments, but there's been so much that often the wires seem to have been crossed.  My brain is exhausted.

I'm tired of having to pee in a cup to prove that I'm not pregnant because I'm a female who is under FIFTY.  I've had a tubal ligation.  I've had an oophorcetomy.  My cancer treatment has put me into early menopause.  I have NO OVARIES and have been FIGHTING CANCER SINCE 2013!  Yet, I STILL have to pee in the cup.  Why?  Again, I have to defend my case over and over, but because it's "hospital policy," I can't be taken on my word about MY OWN BODY.  I'm tired of it all.

Then, there's the *lovely* conversations about my port.

What's wrong with your port?
You don't have a POWER PORT????  How could you not have one?
Is it a mediport?
I don't know if we can access that for this test.
What needle do nurses use to access this THING?
You must have a double port.
Your port is weird.
This is the first time in my whole career I've even NOT been able to access a port!
We are not going to be able to use THAT port.

I even have an x-ray in my phone to show inquiring minds who want to know.  They don't believe me that I've been accessed before for scans like this.  WITH THIS PORT!  Beyond that, isn't it THEIR job to know the type or the needle and where and for which procedures it has been accessed? Is there only ONE BRAND of port in the world?  We live in DALLAS, TEXAS, for heaven's sakes.  Shouldn't these people be trained on more than one type of equipment, not just for my treatments, but for anything else that might come up on the job?  When they don't have any nurse available who can access ports, or don't want to call anyone, or don't want to access it, or don't understand why ivs are such a big deal for me, it's even more frustrating.  I have been fighting cancer for nearly seven years, before that, I seem to have iv issues with every procedure, and now I have something like IVPTSD.  It's a thing; trust me.  And, it's beyond exhausting!

As if *simply* fighting cancer wasn't tiring enough!

I know positivity does wonders in both mental and physical health and healing, but there are some days that I just don't even want to deal with it all.  I'm tired of have to try to handle all the extras and I just don't even want to get out of bed, unless it's into a hot bath.  

I feel fine. I'm fine, fine, everything's FINE!  (For the most part.)  The pain is manageable. The treatments are manageable, especially now that I have fewer infusions that the drug company will pay for.  The whole fight is fine, and even somewhat monotonous, until something new comes up, or I have to do something extra, or any of the above situations come into the picture.  I'm exhausted, but I'm fine.



I had a bone scan and a CT today.  I vomited before I even took a sip of the *delicious* vanilla shake.    It's fine.  The office manager is THE SAME WOMAN I've had every time I have been to this place, the one who needed ME to explain to HER that an oophorectomy is the surgical removal of the ovaries, but that's not good enough---pee in the cup.  FINE.  I had a few very kind nurses and other medical staff today and also some who were real pills.  Now, I get to wait for results and wonder if the scans found out what this weird and painful new thing in my chest could possibly be.

I'm done with today.  I'm tired, but its fine.