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.     

Birthday Appointment

 The day after my birthday, dressed in my finest 'Birthday Queen' shirt and most sparkling crown for travel to the far-away lands of my cancer clinic, to party with oncology friends and strangers.  This follow-up appointment was so close to my actual birthday, that it deserved to be celebrated.  (Side note: I'm now 41.  That's quite an achievement for someone who was told they would never make it to 38!)

 This day was a check-up day, only, NO INFUSION.  Dr. Cole wanted more lab work and more face to face, due to last week's low numbers and concern for my overall health.  

It was also a day that melted my heart and brought tears, as well. Today I received so much more than care and kindness from my team.  As I met with Dr. C, there was a knock on the exam room door.  A crowd of masked, busy nurses stood outside, having taken time out to build a spontaneous surprise donut cake and sing "Happy Birthday" and spread so much love for little ol' me.  What an amazing gift--to know that I am a real person and not just another number on the list of patients for the day.  I have tried to show my love for these essential workers in my life, and I a grateful that that my love was relieved and rebounded in a personal way!  

Lab results were, again, not what Dr. Cole had hoped for.  They were still too low to start back on full dosage. In fact, my body is so worn down, from the bones-out, that she doesn't think I will ever be able to take any chemotherapy at full dose.  Hear that, cancer?  You might think you're winning.  However, when anyone tells me "you probably can't....." it also means, "you most likely will and disprove us all."  

Hopefully, another week of 2 few pills a day from one drug and another week of holding out altogether on the other will help.  

It is not fun to know that there is cancer lurking and growing inside my body.  It feels terrible to have a plan and then have that plan end up hurting me so much that plans have to change.  

I know God knows me and has plans for me.  I don't know what, exactly, those plans are right now, so I continue to search and pray and HOPE that I still have good to give to the world.  Even it is only my world at home, there is great importance in the space.  

I have more to care for in my home world than I ever thought I would.  After seven years of struggles with infertility, miscarriages, sadness, and pain of want for a family, we finally had our first child.   The second little blessing came much sooner and with less struggle and heartbreak.  That unexpected third baby was a total surprise and did not come according to our plans.  Our family was complete, three beautiful boys and 11 years later.  

That pure love and gratitude for blessings was jackhammered with the heartbreak of breast cancer the following year.  What? Had we not ached and bled and pleaded for these miracles in our lives?  Had that storm NOT been enough to teach proper humility and faith.  Had we not learned well enough to appreciate the heartbreak and heartache from this hardship?  Why did this new wretchedness work its way in so soon after receiving three of life's greatest joys?? 

And again, and again, and again, and again.  

What I am not understanding about grace and joy and tragedy and trials?  Do I have to be willing to NOT be healed?  I don't know how to just NOT try at all, but I do know that God knows and that  is the most important thing feeding my hope for now.

Until some new light illuminates some other way around this mess, I will continue to fight for faith and hope and strength and health and miracles so that love and kindness and truth can shine out of me.  It is real.  When doctors can't explain how I made it all the way to 41, the miracles have to be real.  And, I will continue to seek that truth and show that gratitude during sunshine and storm. 

(Surely, the cancer isn't done having the hell beat out of it.  Onward!  FIGHT!) 

  

 

Round 2-ish. Some Adjustments Needed

It was not a piece of cake to leave my Virtual Academy students at  home while I received my 2nd infusion.   I figured that I wouldn't be there too long, as I was going for labs and a 30 minute infusion.  

As with so many other plans made in 2020, the day didn't quite turn out as expected.  

We showed up early. I had blood taken for labs and thought it would be a hop-skip-jump to my infusion room.  As such, I left all my items in the lobby with my friendly driver. There was no time for retrieval and no open infusion rooms, and I was surprised to be taken directly from the labs, through the secret hall, straight to meet with Dr. Cole + her oncology fellow.  It was not straight, though.  What a wait,  especially with no tech to keep me occupied!  (I passed the time with a little observation-room yoga!). A new nurse came in to ask all the questions, and there was another interval of clinic pilates.

Dr. C was happy to meet face to face, but not happy with my lab results.   After my week off of one chemo pill, she expected my blood to have a better bounce back.  However, these old bones aren't doing much bouncing at all these days, thus no assistance to important blood stuff rebounding. Instead of counting on the originally scheduled chemo restart, Dr. Cole gave me another week of rest and decreased the dosage of the second chemo pill. I would then wait until a room to open up and continue to the Herceptin infusion, returning in 5-7 days for more lab work.  

Instead of continuing a pre-chemo workout, I was reunited with my friend and my stuff back in the lobby for another large fraction of the day.  FINALLY, a room opened up, and it took no time to be out and back home, praying my kids were able to stay alive with the extended adult absence.  

I like to joke that cancer has made me "mostly dead," many times over.   As we all know, "Mostly dead IS slightly alive," and it has taken multiple miracle pills to put me back up on my feet to fight.   In this case, I'm hoping that my lower dosage of miracle pills will allow my mostly hollow bones to make enough to keep me going.  

 I'm finding in this mostly disastrous year, there are MORE than just slightly enough reasons to keep on living and looking for all the miracles that the Maker will send my way.       

Round One: Check! (First Three Weeks Complete)

 I was afraid.    

I know I'm not supposed to have fear if my faith is strong enough.  That very thought is repeated in scripture and uplighting messages so often that it should just be easy. 

Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. (Isaiah 41:10)

The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid? (Psalm 27:1)

Be strong and of a good courage, fear not, nor be afraid of them: for the Lord thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee. (Deuteronomy 31:6)

...Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest. (Joshua 1:9)

It just isn't always easy.  Sometimes I DO feel dismayed!!!

 Even with all the reminders, overcoming is often any but simple.  Just reading about turning to the Lord and allowing Him to replace fear or anxiety or concerns and questions with peace doesn't always happen with a thought or a prayer or the snap of the fingers.  For me, it is something that has been cultivated.  With this constant struggle with cancer and all the pain and fear and unknowns, I am finding the process this time even less of an instant feeling of peace.  So many scary thoughts and feelings try to seep into my consciousness: 

Cancer came back so quickly this time.  

 I'm running out of options.  

So far, the approved and possible treatments that I haven't already tried include only the one I'm on.

Soon, I'll be left with only a handful of trials.  

In the meantime, I have a few annoying/painful side effects to put up with.  

This junk feels hopeless.

How would those around me feel if I just decided to give up? 

But........I can't even let myself dwell on the thought of giving up, so I don't give up.  I keep going.  Even when I HATE it!!!  I constantly tell myself: 

Today's fear can become tomorrow's faith.  

  I keep getting my butt out of bed and doing the things and swallowing all the pills and trying to beat this beast back.  

Thankfully, so far my only side effects from those long lists have been a day of constipation; a day of diarrhea (probably brought on from the drugs to stop the constipation.); some sensitivity and pain on my hands; more of that on the soles of my feet; most of that pain and a feeling of burning and constant blisters on my lower lip, of all places. 

Also, I am tired ALL.THE.TIME.

For the hand and foot stuff, I lather up on all the heavy creams and often wear socks on my feet for most of the day and night.  For the lips...I have tried ALL the balms and chaps and glosses and creams and plant extracts I could find.  FINALLY today, the day before starting this madness all over again...my lip is feeling better!   

This at-home stuff has not been as scary as I thought it would be before I got going.  I'm in it now

and don't dwell so much on the bad, especially because the bad is far less that I thought it would be before starting this three weeks ago.  

Tomorrow will be another infusion + restarting the higher-dosed pill, at a smaller dose this time.  I'm feeling far less anxious and much more faith in the Lord's promises to strengthen me through the storm.  (I have a leg up because I come from a long line of strong women, and I got to spend the weekend with two of those!)

One socked foot in front of the other.  

Day One: Xeloda + Tukysa

I was anxious.  My nerves were working at high speeds, making my gut hurt and my brain spin.  I wanted to scream and cry and be mad at the world and punch a pillow and run away or just not go through with it. Could I please go back to sleep, for all the hours it would take to make this year, and all the crap that has come along with it, simply go away? 

Already, the frustrations over acquiring my two oral chemotherapy prescriptions was enough to make me want to quit.  What, you ask?  Couldn't I just wait for a Walgreen's text to tell me this new drug cocktail was ready?  Definitely not.

For one pill, I have to use a mail-out pharmacy, which set up a date and time for drop-off.  I cleared my schedule to be at home for that whole day, which turned out to be a waste.  Only a missed package sticker alerted me they had and gone.  I most likely missed the FedEx delivery while I was in the bathroom, taking a 2020.  Calling the number from the missed package sticker led me only to robots and never to a representative or real answers.  I downloaded the app and tried to communicate with the online assistant, but that binary code did not compute my complicated crisis.   When I sent a message, the app froze.  I gave up on the hassle of it all after an hour, and, I'm sad to say, lost hope. 

Remarkably, five hours later, the truck came back and handed my medication over.  That message, and all other attempts, must have gotten through to someone.

The second drug required me to get a ride to the downtown pharmacy. [Those cannot be delivered because they require refrigeration.]   Before I could leave, a pharmacist enlightened me on ALL of the possible side-effects.  Not much to worry about, really.  

Just the list of regulars:

• diarrhea
• rash, redness, pain, swelling, or blisters on the palms of your hands or soles of your feet
• nausea
• tiredness
• increased liver function blood tests
• vomiting
• mouth sores (stomatitis)
• decreased appetite
• stomach-area (abdomen) pain
• headache
• a low number of red blood cells (anemia)
• rash

The other pill adds, relatively, more of the same:

• severe nausea or vomiting (may be severe),
• stomach pain or upset,
• loss of appetite,
• constipation,
• tiredness,
• weakness,
• back/joint/muscle pain,
• headache,
• dizziness,
• trouble sleeping,
• skin darkening,
• skin rash,
• dry/itchy skin, or
• numbness or tingling in your hands or feet
• hair loss
• nail weakness

What, REALLY, is there to be afraid of???????

So, on the big day, I put on my big girl panties, swallowed my big pile of pills, put on a semi-fancy dress, and prayed that I would be strong enough to survive again, after only a short pause in the struggle.  All of this hopeful thinking didn't stop ALL of the frustrated tears or anxious fears.  My youngest son did notice I was a little scared about my treatment, and insisted I take one of his squishies for support.  

 I was grateful to only have a short infusion [if it hadn't been delayed by a late arrival and a sluggish pharmacy.]  

I was comforted by many compliments on my growing hair, for actually putting on makeup, wearing such a fancy-for-chemo outfit, and the comparison of Princess Aurora to me. [Aurora just happened to be my nurse of the day, as well.]  The infusion visit was working for good.  

Despite the stress of the morning, I felt as if God was throwing a little humor my way.  I noticed that my consent form mistakingly showed my reason for this new drug combo as: "BEAST CANCER." BEAST CANCER???!?  Aurora was mortified!  I thought it was HILARIOUS!! After that priceless gem, there was much laughter, and some of my angst melted away.  

 

I am happy to say that I survived the day.  It was not what I would call joyous. However, I was able to take a long nap..not long enough to erase the crap of the year, but long enough to dream away more anxiety.   I thought back on seeing the viles of my blood [for labwork] against the color of my dress.  I've known for a long time that Aggies Bleed Maroon, but my own blood actually seemed closer to maroon than red today.  Perhaps my vision was playing tricks on me.  OR, perhaps it was just another sign that I need to remember to fight and to BTHOC. I was still nervous and questioning which fun side-effects were headed my way,  but I know of miracles and tender mercies of being saved before, and have hope that those will happen again.  

Guess Who's Back? Back Again.

It was scan results and infusion day.  I would like this post to be about all the joy.  It will not be.  

I will start with the happy thoughts first:

•  got a ride from L.
• passed the Covid screenbladdering with 96.7
• made it on time
• not much wait time
• took the secret passageway from treatment to doctor area
• met a new nurse
• met face-to-face with Dr. Cole
• labs looking great
• no abnormality observed in brain, pancreas, spleen, lungs, adrenals, kidneys, uterus, lymph nodes.  
• no changes observed in spine or pelvic regions.  
• blood clot in gonadal vein no longer identified
• had a short infusion, as I only needed Zometa today

Now, for the not-so-happy thoughts:

• new irregular legion seen in liver (1.6cm)
• another new irregular legion hanging outside the liver in the peritoneal space (1.4cm)
• small focus on enhancement having out in duodenal wall 

There it is.  Cancer is back.  Even if just a little bit and hasn't been much of a rest at all, the fight is raring up again.  

The plan is to try a cocktail of three drugs, which was just approved this year.  I don't know yet when it will begin....we must wait for the approval of the insurance.  

Here we go again...........

Today's Curse is Tomorrow's Blessing (Wednesday Scans)

Who among us can say, "I have glided through life with no worries or pain or confrontations or problems of any kind."?  Is there ever a year with perfect weather and purely radiant days, free from health issues or heartache?  Of course, the answer is NO.  

This life is filled with a plethora of triumphs and trials, sunshine and storms,  along with time for celebration, as well as for sorrows.  The trick is to learn to survive as well as to thrive, no matter where this adventure leads and what lies along the tracks.  To 'bear the journeying without murmuring' is not easy or natural to human nature, but the attempt at it is one way I continue to fight cancer and feel strength.  

acceptance

sorrow

humility

faith

gratitude 

hope

kindess

humor

communication

learning

sharing

grit

optimism 

forgiveness

empathy + sympathy

charity

knowledge

understanding

prayer

work

family + friends

grace

love

These are only a few traits I have been working on cultivating in my mind and heart, my ammunition against sorrow in this lifelong battle against the curse of cancer........and any other challenge I meet.  The objective is happiness, yet not JUST happiness.  I aim to see the light amidst the darkness.  My drive is for my family and to lift others.  I strive to remain meek and loving and concerned for my fellow humans, while working to remain grateful for all that surrounds me.  Being physically and spiritually healthy is a great blessing, but it is not just a gift, landing on those who simply stand in the right place on at a certain time.  It takes a growth-mindset, work, and hopeful steadfastness.  And, with all this action, there must be the understanding that the point might not be to overcome it all. In my case, I have learned to prepare and accept that there may come a day when the answer is "no."  I have been healed so many times since 2013.  I have to continue to have love and. understanding that there might be a time when I won't be. 

 

I had scans today.  Similar thoughts seem to accompany this procedure: Will cancer stay away?  Will I have to battle again?  Where will these cells attack my body, and how will I force them away? Do I have the energy and strength to fight again?  How will another battle affect all the people in my life?  Focusing on the negative has taken my mind down a wormhole to the dark side before.  Today, I try to Baby Yoda my way out.  

Then, the joy trickles in.  Joy #1: My dear friend drives me, we catch up a bit because we can't be together as much as we would like in this doo-doo year, but we arrive early. Once there, I approach the front desk with a smile behind my mask.  "Good morning!  I'm here to order my delicious, vanilla + Barium shake!"  

Joy #2: Due to the CORONAS, they are not doing that right now,  Two big glasses of cold water would due.  Hurray!  (Yet, if water works now, why does it not work every time?  And, what evidence of cancer could be missed with just icy agua? [Focus on the joy, Mel.  Focus on the JOY!!!]  

Joy#3: I don't feel a thing when my port is accessed.  

Joy#4: Out comes my favorite scan tech, Lance, who remembers me, gets my jokes, is tall, dark, and handsome---for someone else, of course!, and likes me as a person (or at least pretends to,). This means that the scans will be a breeze!   

Joy#5: I about die laughing when, after multiple reminders to return upstairs to have my port de-accessed, I pack up and start heading out the door!  Only placing my bad down to search for sunglasses reminds me of my airhead action and triggers a chuckle-fest with myself on the way upstairs and with my nurse, who had been wondering what was taking me so long! 

Joy#6: I felt zero pain when the needle was pulled out, which is a far cry from the grief many nurses gave me with my previous port.  

Joy#7: We drive-thru to order a healthy lunch, which was much needed after my morning of fasting, except for pills and delicious H2O.  

It's important to remember that this life is for joy.  Sometimes circumstances leads to sorrow.  It takes work, but we can choose to see the good within it all.  That is how the battle with today's curse can lead to tomorrow's blessings.