Enhertu #26

 

This week had a quadruple purpose, only one for chemo infusion.

The appointment was at 9:00, and we strolled in almost on time.  

Labs took FOREVER!!!!

However, it gave us extra time on our other endeavors.  

Dana was able to work on her school work and get more than halfway done on her soon-to-be-due paper.  

Next was the party planning for her husband's soon to be here 40th birthday.  While Dana was writing, I was searching themes and supplies and building the invite.  Party planning is a thing we BOTH love to do, but Dana needed help in the form of a planner for this one, with all the October things going on in her house + the momma to younger kids and sports and fall traditions, etc.  That's where I come in, and we FINISHED all plans and purchases during this infusion fusion of creative party minds.    

I wish I had more time to get a bit more ready for the day, but had to do a ride-along with Kyle as he's practicing driving in order to receive his actual license and not just a learner's permit.  No one from early morning swim would take him to school.  He had to notify me to get out of the bath and throw some clothes on.  That's what delayed our arrival to the Cancer Center, but Kyle did a great job of driving to school and not crashing and delaying anything any further!

No matter how many tiny minutes we showed up behind schedule, I was rocking' these pink boot dress shoes with a bit of 1880's and 1900's theme.  They are a mix of when shoes had to be buckled with hooks and when fancy fashionistas wore their jeans down over heels.  

The pharmacy FINALLY approved my infusion--my liver numbers were a little elevated than from last time.  Duh.  I have a couple of new tumors that have been biopsied last week.  Let's move ahead with treatment to try to keep going on a treatment to weed them out.  

We had some snacks and chicken fajitas for lunch, and then it was time to head out and accomplish the 4th goal of the day--dropping off donations that we've been collecting for the month and challenging each other to do more to win a lunch from the losing side.  Dana has BY FAR been the winner for October.  The next infusion is mid-November.  We'll see if I can tie it up!

ps.  The Covid booster I had on Monday really knocked me out yesterday.  Feeling much better today. 

Here Comes the Sun

I actually had a great appointment with Dr. Sun today.  

Dana was able to come and help fill in some holes about my healing process from the times that I was so fatigued and weak and could fall asleep mid-sentence, for which I was truly grateful!

It was time to get real with this young doctor, especially now that I am so much closer to being my normal self than when we last met for a follow-up.  

I asked why it took so long for us to get started on treatment.  That concerned me and actually upset me, as I know my past with cancer and how aggressive it has always been.  My catch phrase for it has been, "It   grows like a weed, but dies like a weed."  When we find the right treatment, or weed killer, it dies off,  sometimes miraculously.  

I was shocked by his response:

"To be honest, I didn't know if I wanted to treat you."  

He further explained, not that I wanted to do nothing, but I wanted to make sure this was the plan that I wanted to take for where you are in your journey.  His honesty was incredible.  He explained how he and Dr. Scranton were hoping that gamma knife radiation would be an option.  He spent quite a bit of time researching and consulting with colleagues and peers for second and tenth opinions.  "Most everyone said to go ahead and treat you."  He still was researching dosing amounts, meds to add or not add, and pretty much everything he could before he made his own decision, also inspired by my desire to proceed.  He knew he needed to do something, but he just wanted to do his due diligence on all he could find before committing to this second whole brain radiation, which doesn't have a high success rate and is not a guarantee.  "There's no magical technologies out there, and I have not had previous experience with a patient like you.  I always reach out to my peers and medical experts in radiation oncology.  There is only so much that can be gained from published papers."

I then ran him through all the side effects after brain radiation (and choosing to have chemo on the same day as the last day.). He asked questions.  Between my memories and Dana's we were able to explain the quick decline for the weeks after the original treatment: super-fatigue, extreme weakness, not able to walk unassisted, collapsing to the floor and needing help to get back to a couch to standing position, night hot sweats and cold sweats, incontinence, needing more steroids, mouth sores, quick weight loss (from 172 to 157) in a matter of a few weeks, dry mouth, not able to complete some sentences without falling asleep mid-conversation, not accurately texting or having ability to use my phone, and a few others.  

Once I got adjusted steroid dosage and other drugs worked out, and was able to keep my body fed and set alarms to keep on a good schedule, all that started to turn around, as the old Sun doc could see today.  

I was grateful for his honesty in discussing this with me.  I explained that if there is a treatment, I want to pursue it.  This is part of my goal in this journey--to help other patients not have to endure the years of metastatic disease that I have and help put information out there, possibly to benefit my own treatments in the future, but for sure for the benefit of others.  I think he responded well to that.  

I even think the Sun is FINALLY starting to truly understand my determination, strength, positivity, and humor in this journey.  I actually made him laugh today.  It might have been more of a quick chuckle than an actual guffaw, but we are getting somewhere.  I told him that he's lucky that I was born a genius and still had most of my memories intact.  

I also told Dr. Sun about my GOAT oncologist.  He looked her up and is planning on getting in touch with her, which is so comforting.  

It was another good day.  

Sunny is making my follow-up brain MRI, which will be in Lubbock, and he will schedule it for a day when he can meet with me that day to review results.  As I come off of steroids, he told me to call if I get super cranky, fatigued, or have frequent headaches or other negative side effects.  

How great it is to finally feel on the same page with this young and somewhat timid and quiet doctor of mine.  Communication is key!

After that, Dana and I went to lunch and I'm home to rest and write.  

Baby steps are becoming Toddler steps now.  I'm on an upward trend and still expecting miracles!

A Fresh Biopsy

It's time for another appointment in Lubbock. Thankfully, it was not for the procedures that were canceled about a month ago.  Dr. Tafur set up for a biopsy of my liver tumors, so we could check for any mutations or new ways to treat my overall cancer.  

I'm so very grateful that my aunt could be my person for the day, and that old friends could house us overnight.  What was not so ideal is that I left my phone at home and felt a bit lost without it.  Alarm? Nope.  Something to keep in touch with people during the day? Forget about it.  Being able to document with photos? It was just a make it work moment.

We got into town a little later than planned, but still with enough time to grab dinner.  My instructions were to come in to the hospital with nothing to eat or drink after midnight, so I wanted something substan.  We went for pasta.  

It was delicious, but did me wrong. As I got into bed, that red sauce acidity started stabbing me with heartburn.  And I take medication for that! 

I was going to just try to suck it up and fall asleep, but it was too bad.  I got up to ask for some Tums or Pepto, but my friends did not have that in the house.  Luckily, their son, a nurse, who lives next door was able to bring some over.  Best of all, they were able to give me a blessing of healing and a restful night's sleep. All those things helped me sleep through the night and be ready for the procedure the next day. 

We arrived early, to draw blood for labs.  My man, Timothy, was there again.  He stuck in the needle without me feeling it at all. Lots of people say they are good.  Few people have the skills to back it up.  He is one that has.  Next, I was rolled up to room 35, my home base for the day.  An IV, not as pain free, was placed, but there was no digging around.  She got it on the first try.  I changed into my lovely gown and hospital socks, was given several warm blankets, and told that it would be my turn soon.  The nurse went through the pre-procedure questions and possible concerns, and left us to wait. 

Soon, transportation came to take me downstairs.  An ultrasound of my liver was taken to determine the spots from which to draw samples.  I was given conscious sedation (not enough, in my opinion or Stephen's), but local was enough to get the job done.  The doctor only had to take three samples, which is so different than my original biopsy from back in 2013, where I ended up crying because it was just so many and took so long that the local wore off and 1/3 of my breast seemed to be biopsied out.  This day was so easy compared to that.  

When I was returned to room 35, it shocked my aunt.  I don't think she had time to get started on any work, we returned so quickly!  That was good because it meant that all had gone according to plan with no problems or complications.  

I then had a chance to eat and drink! A lunch from the hospital's Chick-fil-a was just perfect.  Then, I could rest and wait for the four hours of monitoring  to confirm that there was no internal bleeding in my liver.  

At that four hour mark, transportation wasn't available to take me back downstairs, so my ultrasound girl brought the machine to me.  She scanned me, said that it all looked good to her, so she would confirm with the doctor, and my nurse would be in soon with my discharge instructions.  Then, I would be released to return home.  

I am so grateful for everyone who worked with me today.  It was beyond smooth.  Everyone was so nice and caring and happy to have me as a patient.  I learned a few crazy connections from some nurses, like one who grew up in Midland and was one the swim team and went to the same high school as my mom and her siblings and that her brother probably went there with Stephen's brothers.  Then, another nurse, who was planning on starting school next semester to become a nurse practitioner, even though she didn't want to and was just following a strong prompting from God.  The day went swimmingly, and I was so grateful to have these lovely people to help and assist with my well being.  

Then, it was time to go home, and such an easier drive without rainstorms and darkness from the trip the night before.  

So far, I'm feeling a bit weak, and I am not so happy about not being able to take a bath for two days, but I'll deal.  I'm thankful that all worked out with very few problems and no cancelectomies! 

 

The GOAT + Dr. Tafur + PET Scan Results + Fluids

 In these weeks of waiting and healing and baby stepping my way back into the real world of life, I had an amazing experience.  My favorite oncologist of all time, the GOAT, as far as I'm concerned, had me on her mind.  This amazing human, Dr. Fleener, from my cancer past, reached out to me to give me some of her thoughts.  We spoke on the phone for nearly an hour, something that helped me greatly in my recovery.

Dr. Fleener gave me so much joy on being able to share my experiences with whole brain radiation and give this other patient (one with a very similar diagnosis to mine) the courage to move forward.  She is now doing well, where before talking with me, she was so unsure and wanting to avoid it.  One of my main goals in this journey is to continue to live for information for future patients like me.  

This HER2+ is still fairly new.  In 2006-2007 days, this diagnosis was a death sentence because there were no treatment options.  If you pay attention to adds promoting drugs that extend the lives of metastatic breast cancer patients these days, all of them say "for HER2- patients."  It's important to me to be a patient that lives and leaves information for the future care of patients like me.  

This news about helping another patient now was a great blessing to me. It gave me so much joy that I teared up.  

Dr. Fleener asked questions and gave me her thoughts:

I should have an updated biopsy on my tumors to check for new genetic mutations which might open up possible new treatments.  I could also go back to a former treatment that I never finished because I hated it, but lower the dosage and add Herceptin again.  

The call was uplifting, strengthening, and secured her always and even more as The GOAT oncologist.  

Today was a follow-up with Dr. Tafur.  

The last time we met, I was stunned with his demeanor.  When I asked about the brain treatments and what was taking so long, he seemed to be a bit off-put and stoically mentioned that my brain was Dr. Sun's department, and he didn't have territory of that.  It cancerned me a bit.  

Today was different.  He came in as his old self and pulled his chair up close to me to discuss the PET scan results.  There are two new tumors in my liver and some spots that lit up on the scan, but he didn't spend a lot of time talking about those.  

He had already scheduled a new biopsy to be done in Lubbock on Monday, and was looking forward to discovering any new genetic mutations or other ways that we could treat my disease.  

I specifically asked about what was going on with his demeanor in the last appointment.  He just explained that he was not going to step on Dr. Sun's toes.  

He also mentioned that he is still my overall oncologist and was in charge of helping me make the major decisions in that area.  He was NOT going to put me through shooting chemo into my spine or brain because IT DOES NOT WORK.  He's had former patients that have done it.  Why would he want to put any woman through that pain and agony when it does not work?  Plus, he knows that I don't have LMD (Leptomeningeal disease) because, "If you did, you wouldn't be here today talking to me like you are." 

It was such a positive appointment for me today.  Not only did I not have to ask about a fresh and updated biopsy, he'd already made the appointments!  He was right on track with my favorite oncologist of all time, and it felt like a God thing.  I'm so grateful for my team again and feel like things are falling into place for more positive momentum.   

My BP and heart rate had been quite a bit off today, so I did have an infusion of fluids, and I'm feeling so grateful for answers to prayers and so many positive plans on my behalf.  

I'm so ready to keep taking the baby steps to get to the next thing in this journey!

Enhertu #25 + Zometa #20 + ECHO

 

Thankfully, I am feeling SO much better!! Not quite cleared to drive, but was able to find a great driver!  

One of Stephen's friends from growing up here was free to hang out with me for the morning.  How fun it was to chat and get to know him better and have him help me with the wheelchair and getting back and forth from the clinic to the hospital.  

Got there a little early, and had my port accessed and blood drawn for labs.  Then, my nurse had an amazing idea!  Why don't we send you over now for your ECHO, so that will get done with we are waiting for the pharmacy to release your infusions?  A BRIGHT IDEA!!!  I LOVE THAT!!! 

Onto the wheelchair we went.  This time, the tech was so caring and lovely.  She was thoughtful and kind and soft and willing to talk and answer questions or be silent when needed.  It was nearly perfect.  

My friend for the day, Uncle Jeffro, and I laughed and chatted, and before we knew it, it was time to head home.  How great grateful I am for good people here who make good decisions for my care and give of their time to help me be here and continue in this journey!!!