Scan Results + Dr. Coolio + H#71

 The waiting for results is over, but sometimes getting past the waiting place for one thing doesn't change the overall level of concern.  After a longer than normal wait this morning, I FINALLY learned about my CT scans from last week.  

Today's results were not terrible, but were also less than impressive.  

I had scans on my brain, my chest, and my abdominal/pelvic regions.  In some places, the chemo cocktail I'm currently taking has been keeping the beast at bay.  In others, there are little additions of baby spots or new causes for concern.

Dr. Cole wonders if taking time off to fight infection could have complicated the projected program more than expected.  

Who really knows, especially because this cocktail was only approved THIS YEAR? (We ALL know  about this year.)  There is just not enough information about all the side effects and life expectancy for me to keep moving forward with the pills with absolute faith.  I've also been anxious about all the changes we have had to make in just a few months: the extra pauses, the changes in doses, and what seemed to be more extensive side effects to me than what I read about in the initial reports.  Plus, I think the scan results show that the current plan of pills could not be counted on to kill my kind of cancer in the near future.  

Dr. Cole presented me with another decision to make:  Keep the status quo and stay with the pills, or   switch back to chemotherapy via infusion.  I considered that all the other times I've been given treatment, from the very beginning, up until now,  They  have been in two forms: radiation or infusion.  Up until now, those treatments have killed off my cancer, like weed spray kills off destructive plants.  (I realize that doctors have not been able to sustain these former massacres over the long haul, but these pills can't even conquer the battle of 2020.)

After my appointment, I did have an infusion of Herceptin, number 71.  (For those keeping track, I did not blog about the 70th dose of Herceptin, which happened when I was feeling all the dark feelings.). 

Dr. Cole is double-checking my medical history to confirm that the new chemotherapy she is suggesting I start is one that I have not already received.  No matter which one is chosen, her new plan is to switch to a weekly delivery.  Every three weeks would most likely be too strong for one dose, and my body seems to be less able to handle big doses of this poison.  Having a weaker dose, more often seems to have the better outlook.   

I find myself in another waiting place, one in which I do have more knowledge to work with than I had before today.  Now I'm waiting to find out a new poison projection for my future.  

For now, I am off the pills and back to hoping and moving forward with faith in God's plan for my life.  I know that I am here to reach hearts, lift hopes and teach about my trials.  As long as I am able to fight for this mission, I will keep kicking the cancer back.  

(I also had to obtain a doctor's note to be able to schedule an appointment with my new dentist.  Thanks, insurance.)

Scan Time

 I had another set of CT scans scheduled for Monday.  Then, I received a letter from our new insurance on Friday, announcing that they were denying said scan, giving me no time (weekend only) to work it all out.    

On Monday, I called the clinic at their earliest time to inquire.

Notes were made and nurses would call me back.

My idea of nurses calling back seems to be different than theirs.  

I finally had to call THE NURSES back, after giving them several hours to respond to my request about whether or not I should even waste time coming down to the clinic (because I was NOT going to have scans done on a new insurance, with no promise of any of it being covered.) Monday was not scheduled an appointment with Dr. Cole or any infusions.  It was simply for accessing my port, drawing labs, time for drinking the delicious shake prior to scans, and scans.  The scans that insurance did NOT want me to burden them over.  

Minutes ticked on and on with still no callback.  It was time to either drive to the clinic or skip it all.  I still didn't have a simple, straight answer on whether or not to ac.  I decided to take the leap and go.  At least I could see whether or not it was time for another blood transfusion.

I checked in and no one was exactly clear on my plan for the day.  They had me sit in the waiting room and wait for further instructions.

Within minutes of following orders, my imaging Guardian Angel, Lance, appeared before me.  He works downstairs in a completely different part of the building, but happened to be right where I needed him to be. Instead of passing the buck and relying on someone else to call back or find out my insurance questions, he returned downstairs, gathered information, and gave me clear instructions.  Soon, my port was accessed and I was waiting for a scan, which HAD been approved!  And, Lance did it all with a smile and without me needing to pull any cancer cards at all.  (Good, because I might be running low on stock of those babies!)

All my peeps in Imaging were killing it that day: (I truly apologize for not remembering all the names, but......chemo brain?  They all played an important role for me that Monday, as I was starting to lose my mind and my confidence in health care in general.  There was The Manager, who heard about me and my day from Lance, who described what had been going on with insurance and that I wasn't hearing much from the cancer clinic.   I love The Front Desk Angel who used to be a little coarse, but has softened with me, through kindness and care about her day and her story.  She now knows my story and actually understands that my body does NOT need a pregnancy test BECAUSE I HAVE NO OVARIES, among other friendly and understanding comments about prepping for the scans and that she would have me wait a few minutes longer, so Lance could be back from lunch, rather than someone I didn't know.  (It's amazing how kindness can change people,  especially when dealing with different races and the current difficulties of these trying times.)

Add caption

Soon, Lance was back early from lunch and ready to take me back to the scan room.  

His "work wife," Suzie, (another favorite) was also there.  I got settled into the machine, had brain, abdomen/pelvis and chest scans with and without contrast, and a few minutes later, it was time to pull out the needle from my port and head home to finally eat!  

The hardest part of so many things is all of the unknown.  Today, I it was unknown whether or not this appointment would happen.  Now, I have an unknown that I cannot do anything about.  The waiting part.  Waiting for results.  

I know about the waiting part, as I've experienced it MANY times before.  I guess it's not so bad this week because I'm living the break week from one of the chemo pills, the meanest one.  

I plan on sleeping well, getting stuff done, and thinking good thoughts about these scan results.  

P.S. Later in the day, the oncology nurses FINALLY responded to my messages and apologized for not being more on top of things.  I guess I'll forgive them and keep fighting.   

Pink Sunsets

 A few years ago, I spoke with the daughter of a fellow breast cancer support group member about her company's project for breast cancer survivors. It was unlike anything I had ever come across during this battle.  This company, Mei/Co Dance, a dance company, uses their art to bring peace and hope to breast cancer patients and survivors.  

A few years ago, Meggie, the daughter of my friend and the owner of the company, called to record my story and put it together with music and choreography.  Unfortunately, I was unable to attend the performance, due to my health and our moving away from Houston, Texas.  However, Meggie later called to share that several audience members had commented on the strength and powerful messages and feelings they experienced during that dance.  One woman, in particular, was so moved because she felt a great connection to her own life, as she had recently been diagnosed with breast cancer.  Meggie also sent videos of the dancers practicing for the performance and expressing positive messages and prayers to me for being such an inspiration.  That all warmed my heart and made me even more dissapointed that I was unable be there on the actual night.   

A few months ago, I was contacted by Meggie, out of the blue.  She let me know about the company's move to the DFW area, amazingly the area in which I now live!  Meggie also informed me that they were working with a few other local dance companies on a fall performance.  "Can we use your story?" and "Will you be able to attend?," she asked.   Knowing that this performance would be held in my backyard made it so much easier to envision FINALLY being able to see the tribute en vivo.

Before this night, I had only had virtual contact with any other members of the company.  I had never met any of them in person, but had only seen some pictures and videos and heard their voices.  I managed to convince Stephen to accompany me, knowing that Meggie was saving two seats for us.  

We arrived to the address of the event.  Originally, I imagined a venue at some performing arts center, but arrived to a stunning home with an enormous backyard.  (Luckily I checked on the style of dress beforehand!). An impressive stage had been constructed, along with all the fancy lighting and sound equipment.  I met a fellow member of Meggie's company first, and then met Meggie's family.  Finally, we were set up and ready for the performance to begin.  

The heads of all the companies took turns introducing their performances as well as their overall missions.  I hadn't before realized how driven they all were by the power and peace and hope and faith in God.  I was touched by spirit of the Lord that I felt from the start.  I was humbled when Meggie introduced me and explained how honored she was to have me there.  She even summarized my story and how it related to the dance called "Pink Sunsets."

My dance was the second to last one on the program. Right before it began, Meggie and another member of the company moved my chair to the front and center of the stage, so I wouldn't miss a moment.  I felt like a celebrity.    How grateful I am for this company and their work.  

I was moved by my dance.  I saw the theatrical part of my story through their movement and use of the props.  This dance was choreographed, based on my story about telling my children to remember the pink sunsets, especially when I'm gone.  I've reminded them that I would be looking down and watching over them, and the pink sunsets would help them remember.  The dance focused a bit on me learning to dance in the rain during the fight, after a second diagnosis, but Meggie really wanted to focus on my boys and how they know my love through things I've left behind and the signs of my love along the way.

  As if my emotions had not been impacted enough by the performance, afterwards, Meggie handed me flowers and a card from the entire company.  Then, each member introduced themself and spoke about what an honor it was to create this dance, and I could not stop the happy tears.  Meggie asked if they could pray over me, and that led to even more happy tears.  It was lovely.

Finally, it was time to go.   As we were saying our goodbyes and heading to the car, we passed a group of dancers from another company as they worked to pack up the stage.  One guy stopped me and added his thoughts and feelings about my dance and how inspired and touched he felt and spoke about wanting to jump into our circle of prayer in order to be lifted up in the spirit and light of what seemed to be around us all.  To that, another member of his company chimed in and agreed.  

It was all so different than any other show Stephen and I have attended in the past.  And that was perfectly fine for today.  I needed this comfort and spiritual/emotional uplift, and I am so grateful to have been a part of this memorable evening.  

The Week After a Three-week Rest

I had gotten too used to not being on chemo.  I didn't appreciate that time enough.  

After finding an infection around my colon at my last regularly-scheduled appointment, Dr. Cole gave me a rest from those hated chemo pills for three weeks, to allow the infection a better chance of healing and to help my bloodwork numbers get as close to normal as possible. 

Those three weeks were happier times.  I had energy.  I was able to make and reach goals, both personally and for my family.  I cleaned the garage. I organized my kitchen.  I worked on clearing clutter from multiple places in my home and tech.   I took naps during the day.  I tried new recipes and had patience to help my son (the one with dyslexia)  to study his spelling words and finish all his other homework.  I felt like a person my own age, instead of one with an additional 40 years of aches and pains and bad eye sight and actually needing my disabled driving pass.  (Not just milking it as one of the few perks of this disease.). 

The previous weeks were so good that they hurt deeply when they ended, too abruptly for my liking.  As soon as those 10 pills reentered my body on the first day back on the chemo horse, I remembered all of the previous anxieties about them.  My skin began to peel again.  My lips began to dry out, nearly beyond what any balm could prevent.  The diarrhea and loose stools came flooding back.  Leg pain and back pain and gut pain and bone pain in my hips became more pronounced and noticeable. A new, sharp and biting pain appeared, but randomly attacking in random areas.   A bit of neuropathy showed up in my fingertips, and my brain seemed less able to function to the highest capacity. I felt like all the *wonders* of 2020 were right back where they were not wanted.  Add to all of that, the worst part of all.  

I got in a fender-bender after making a drug pickup in the Walgreens parking lot. 

This one event plunged me down, nearly into the depths of despair. I began dwelling on all of my mistakes and disabilities and weakness.  I couldn't stop blaming myself for all the bad days and the costs of repairs and the extra fees (or possible drop) from insurance and my body's inability to hold down a job with which to help cover costs.  

All of the times that I legitimately have needed to ask for help and was too sure of myself to actually ask for it made me feel as if I was ready to give up because now I seem to need TOO MUCH help and am beginning to be a burden.  I was angry at myself for this single second of my life and its ripple-effect, not only financially, but emotionally.  This is not an accident that can be fixed with an "I'm sorry." It will cost thousands and waste countless hours of my already stunted time.  I was feeling stupid and worthless and aggravated over a true accident that I just wanted to put behind me, but couldn't on my own.  I realized how much I hate this disease and all the ways it can try to destroy a person , even one who is fighting to overcome.  

Nurses and doctors alike ask me this question at each appointment: "Have you had any feelings of depression or thoughts of suicide since your last appointment?"  

I truly answer NO each time.  

After this last few weeks and all the feelings of anxiety and rage and pity for myself, I might have to answer YES next time.  I do not actually think of ending my life, but with cancer there are thoughts that go right around the issue.

 I ask myself: "Would it be better if I could just quit chemo and be done with it all?" "I cost this family thousands upon thousands of dollars each year in medical/insurance deductibles and out-of-pocket fees, and with what return?"  A mom who barely functions and completes only a portion of what your average stay-at-home mom should.  "If I just stop taking poison and see what happens and how long it will take, at least I would be saving money."

There are days when I want to just stay in bed, which requires my husband to be home early from work to pick up our boys from school and be the one to shuttle them all to their various practices or performances.  They then all return home to find NO meal and an absent mother-figure, who is still in bed and will continue to be the next morning when they are ready to get to school.  Would it not be easier to understand that these things CANNOT be done when I am ACTUALLY not there, rather than wonder why this woman of only 41years old does not get out of bed to do the things a non-working mom should be able to accomplish?  

Fighting cancer is hard.  

It is hard to continue to live when your body is receiving infusions of small doses of poison and you are constantly in pain or weakened and fatigued.  It is hard to hear about a cancer diagnosis, then beat that cancer, then hear another diagnosis, and another, and another, and then just wait around to discover where this beast will pop up next.  The physical is hard, the emotional is hard, the financial burdens are hard, AND the ups and downs of daily life are hard. Somedays I wonder why I do it and why (and HOW) am I still here and ABLE to do it.  It is hard feeling less than other, healthy moms and getting to the point where many of the things I used to love and enjoy bring much less joy than just staying in bed does.  

Then, I realize that I don't need to know all of the answers.  Plus, there is no way for me to discover all the reasons all this is happening to me (and us.). The time spent worrying about how much time (or how little time) and getting down about how long all the formerly simple things now take hours or days to cross off the list, just waste time from my overall total.  

 After several days of allowing myself to be down and able to feel the sadness, I realized the sum total of these wallowing days is minuscule, compared with my life's little joys.  I get a sweet tuck-in from my youngest son, who wasn't even aware that I was just resting my eyes and that I was aware of his simple act of kindness. Another son lovingly wakes me up in the mornings and always checks on the condition in which I find myself each day.  My oldest has begun to see beyond just his own needs and will often see from my aura what I am needing.  I feel all the love and care and selfless service and prayers from life long friends or short time acquaintances.  I am reminded of people I have known in many places I've lived.  A friend from 13 years ago made it possible to meet up with me to share some of our personal connections and help me remember the love and connections and how so many fellow humans always re-member me and ask how I'm doing.  "It's because of who you are, Mel, and how you treat people." she explained.  

And once I let these grateful thoughts and joyful memories flood in, I start to tear off the funk and move back. up our of the despair.  And that process is not an instant or easy one.  Parts of it can change instantly, but some deep scars take what feel like forever to heal.    

I don't know all of the answers.  I don't know all of the why's. 

I do know that I am known and loved-on earth and from above.  I know that I can truly keep practicing how to dance and find joy, even when this storm probably will only end at the end of my life.  I know that I just need to get back up from bad days and take one day at a time, even when most of that one day is spent in bed or soaking in a warm tub.  

There ARE days when all is not right in the world, and particularly in MY little piece of it.  But, there is always light to be found in the darkness.  I may not be fit to drive my big, MOM-mobile anymore, thanks to cancer and chemo and simply being a terrible driver.  I might have to rely on others and give up some of my own daily or weekly joys of wandering around certain stores for crafting or gifting or dining or decorating ideas.  It's difficult to realize that chunks of my former life seem to be winding  down so soon. 

Then I remember....I LOVE taking baths.  I LOVE resting in my comfortable bed and catching up on favorite (and new) shows.  And, most importantly of all.......I never liked to drive, anyway.  So, chin up and find more of those happy thoughts, even during some of the saddest of all the sad things that can be.  It can always be worse, but I'm hoping that it won't have to be.  

 

Three Weeks Off the Poison

 It's amazing what three weeks with no chemo will do to boost spirits! 

After discovering an infection around my colon at my last appointment, Dr. Cole thought it would be best if I just focused on fighting that mess with antibiotics and rest and healthy lifestyle choices .  I did really well at following my doctor's advice on resting and fighting that infection, but could have been more diligent with the healthy stuff.  I definitely needed to drink less Dr. Pepper and more water, snack less,  and be more active.  Should-a, would-a, could-a, though.  Am I right?  I did experience some negative consequences, though, some that are still biting me in the butt, three weeks later.  

Partly from some less-than-stellar choices and partly from an upset in the former balance of drugs in my system, I paid for that lack of wisdom in the end.  I forgot to  counterbalance the previously *normal* balance of drugs, with all chemo being removed from one side of the scale.  Some chemo (and other medication I take to stay upright and alive) can cause diarrhea + some drugs cause me constipation. Since I was only had one side of the scale for three weeks, a change that actually took me to the point of NO balance, I experienced several days of serious constipation.  

With all the ups and downs I've taken over the years, my body has done a great job of keeping my bowels *normal* by evening-out the scales, for the most part.  This month, however, one side of this fragile balance was erased from existence. That change upset the delicate nature of what my body had been doing on its own. I had not given that process enough respect.    

This is probably TMI, but having dealt with hemorrhoids from at least one of my pregnancies and then days of aggravating that area without success makes thinking about anything else just as aggravating as the basic experience.  When I need to poop, but can't poop without pain and struggle, I just want to go back to bed or sit in the tub all day.  Those options were not completely plausible, but I could not think about anything else.  I even dreamed about a smooth poop experience. Reality was anything but.  

 In the past, my pain tolerance has been stellar.  My mastectomy was the first major part of this cancer journey that humbled me and brought me back down to realizing my fragility and that pain can be a good reminder to pay attention to the body's signs of warning and to stop bragging that I didn't feel much pain most of the time.  I am not immune to pain. Especially from the events of the last few days.  That pain had been anything butt* fun or manageable.  Something had to give.  It was time to get out of bed. (or the bath.)  

We made plans for some fun things while I was off the poison.  I have also been so grateful for many of those days full of fall weather, for feeling strong enough to work on a few major home/garage cleaning and organizing projects, to create some fun holiday crafts and decor for my own home and for a friend's, to be allowed to eat lunch with my elementary kids at school again, to see my oldest son's 1st band concert of 2020, to be able to get out and vote in the greatest country in the world, to get back to in-person (not just virtual) church, to take me out to the ball game and watch our baseball team ALMOST make it to the World Series, to have the kids back in school and staying healthy, and for Stephen's job allowing him to feel, overall, less stressed than before.  I'm also so grateful for the outpouring of  love and support from family and friends.  

As always, I have high hopes.  I am continuing to BTHO cancer.  I refuse to die during a pandemic.  I do not want my fight to end with no fanfare and celebration for all of those who have made the fight worth fighting.  

And, for the first time in my life, I have had to get prescription  glasses!  I'm in my forties and need them for driving.  I never thought I would live this long to need this change in life, so it is a small testament to God's miracles in my survival, allowing me to live long enough to require glasses.  Small and simple things bring about great examples of tender mercies, if you have eyes willing to see!  (I'm hoping this new spectacles bring me closer to that truth!)

Another Infusion Day.....Or, Is It?

 This week's chemo already started out a little different than usual.  My aunt came into town to be my driver and fellow mischief-maker, while my regular friend was recovering from surgery.  

We had an early start (8:30) and got going right back to the lab, where my port was accessed and viles of blood taken.  So far, so good.  

With no wait at all, I was escorted to Dr. Cole's side of the office, and Mike the Nurse went to the waiting area to collect Auntie Deb,  so she could help me remember all the advice for the following week's instructions. 

Over the weekend, I had really developed a sharp AND dull pain in my lower-left abdomen. The pain had been dull all the time and sharp when I moved in certain ways.  Basically, I was in pain all the time.  In my mind, this felt like I expected appendicitis to feel like, but the major source of discomfort was on the wrong side for that.  Stephen suspected that the cause was of adhesions along my DEIP Flap surgical scar. 

Dr. Cole came in with happy reflections on my most recent lab results, with ALMOST everything back into normal ranges.  I was a bit anemic, but not enough to need another blood transfusion yet.  When she asked how I was feeling, I talked about this strange pain, and she did an examination.  As she pushed and prodded around my lower abdomen, she expressed that she was "not happy with how sensitive those areas are." 

Dr. Cole called to her nurses, who called down to the scanning center downstairs to fit me in for an emergency CT.  "If they don't have an opening, I'm sending you to the ER.  We need to know what's gong on."  

Just like that, the first MAJOR divergence from the day's  plan had begun.  Instead of reaching my infusion room and starting on Herceptin, I was headed downstairs.  

My last CT was also performed during these trying times, but that one only required two, large glasses of water.  Now that there was been more time to contemplate 

Once enough time had passed, I was escorted down the hall and into the scanning area.  The actual test did not take more than fifteen minutes, but the entire process of set up and waiting took a couple of hours.  What was supposed to get us out before lunch was anything but.  (And, I was especially feeling it because I only had a banana early in the morning, planning on a short day.)

 

 

We waited to STAT results, expecting another doctor visit.  Instead of another in-room explanation, we got a hallway step-out, a break in another patient's appointment to tell me the news.  

Good news first: The cancer spots HAVE ALREAD STARTED TO GO DOWN!  

(Dr. Cole wanted to jump up and down and hug me, but elbow bumps had to do.  

Bad news next: The pain was being caused by an infection around my colon.  

Not-so-terrible news: It should be cured with an antibiotic infusion and some steroids, plus a 10-day treatment of antibiotic pills.  

*BEST NEWS: The pain was only a colon infection, and NOT more cancer! 

We FINALLY made it to the infusion rooms!  

I FINALLY got to get back on track, but not really.  

I am staying off the chemo for another three weeks, hoping to rise out of anemia and allow my body to tally heal this infection.  

Even with all the changes and unknowns and questions and never-ending fighting, I'm still fighting.  

I had the opportunity to bring smiles and hoy to my fellow patients and to my nurses and doctors with a little gift of gratitude and love.  I was able to get some lunch and a rest and not have to focus on what to write, as I assumed today would be so quick that no writing would be able to take place.  

 

So, instead of thinking of how to describe my concerns of the day, I was able to focus on the good.  Again, I'd been given small miracles to let me know that I am known.  There are reasons why I continue to fight.  Even when my plans don't turn out as expected or I am unable to continue down the predicted treatment plan, I am not forgotten.  My life is meaningful.  I have things for which to be grateful, and prayers have been answered.  I am still fighting, but I AM STILL FIGHTING!

Chemo Day: Let's try this again (H#69)

For the past few weeks, my chemo pill dose has been cut down from 8 of one kind + 4 of the other, to 0 of one kind + 2 of the other.  The side effect differences have been negligible.  However, my labs showed vast improvement in my blood counts.  In fact, every result was in the NORMAL RANGE!!!! That means that we should automatically throw more poison in, right?  

I guess you can't truly have a powerful and successful battle if you don't have the ammo to back it all up.  With that. in mind, I am restarting the full doses of the chemo pills TONIGHT and hoping that my body will be able to keep up.  

My appointment today was so great.  Of course, good lab results trump everything, but in addition to that unexpected news,  I was able to slide through the whole schedule! I had prepared myself for a long, drawn out day, the waiting time being much longer than the actual treatment time. My last treatment day seemed to last all day, and today had that added possibility of extra delays with it being the day after the Labor Day holiday.  A day off at the cancer clinic usually means squeezing more and more patients into the time slots of the next business day.  However, there were no other patients in the waiting area.  I barely sat down, only to be called for lab work.  Then,  I was immediately taken to the appointment side of the clinic. I was shocked with the great news about my labs, but was swept off to my infusion room soon after!  Things were flowing so smoothly!  It was as if they were all reading my mind about being in a bit of a hurry to get home

Herceptin was ready to go. Only thirty minutes later, I was outta there! I barely had time to take selfies, to show that I was actually there before I was no longer there!   What a difference from the last appointment, which seemed to be so crammed with patients that each station slowed down the process to be at least three times as long as it should have been.  Long days have been my normal at the cancer clinic, which is why today's accelerated time table was such a miracle to add to my gratitude about my strong lab results.

This quicker-than-usual return of my 'beast cancer' in 2020, has added to the troubles of these trying times.  There have been many mornings when I don't want to get out of bed and have lost hope of ever having hair again and had thoughts of wanting to stop the battles and stop the fighting and remove the long appointments and side effects of chemotherapy and simply let nature take its course.  Then, I am reminded that I am not alone on this journey.  I have support from inside the walls of my home and far beyond.  I feel a pull to be an example and a light.  Cancer does not seem to ever give up, but neither do I, with the hope that God is on my side and will provide a way for all involved to feel the my husband and my children to also remain strong.  

I hope for more good days like today.  I hope for strength to keep fighting.  I hope for the ability to see the light and the blessings, even when the daily troubles seem to be especially heavy.  I will continue to fight.  

It's ALWAYS something, but it will NEVER be more of something than I will be able to handle.