A New Plan

purpose for pain

While I knew the Yervoy treatment had not worked due to the growing tumors in the groin, I did not know that it had also metastasized further in the bone as well as new small spots in the liver and lungs until receiving the CT scan results yesterday at my appointment.  I am starting a new immunotherapy treatment called Keytruda this Wednesday, August 19th at Lacks in Grand Rapids.  From now on both of my infusions,  Keytruda and Zometa (bone strengthening medicine) will occur together every three weeks indefinitely.

While the oncologist reminded me that mucosal melanoma is more aggressive than the regular type of melanoma and that there is not targeted treatment for my type of cancer due to it not being caused by the typical mutations, I still feel hopeful for this treatment.  In fact, I have always felt this was the treatment I needed but was unable to have it until I first tried the Yervoy (according to the FDA guidelines).  Recently, I came across an article about a man who was diagnosed with mucosal melanoma of the nasal cavity in 2008 whose cancer had spread throughout his body.  Yervoy failed and he had to stop Keytruda due to the side effects.  However, a month after discontinuing, his tumors shrank and he has no evidence of cancer today.  This is the type of story that I need to hear to give me a boost and help me to remain hopeful.

The other recommendation from my appointment is to meet with a palliative care doctor to develop of plan of care to control the pain.  Please also pray for this meeting as it is important for me to have the best medicine to help the pain but also allow me to function as normally as possible.

Even though I knew the stakes going into the appointment, it is still tough information to hear.  I felt strong until thinking about telling my sons this new information.  That is when I crumbled.  Isn’t it every momma’s desire to protect her children no matter how old they are?  I also let myself wallow a bit in self-pity yesterday, feeling more sloth-like than ever.  But today is a new day, and I am keeping my eyes and ears open to all that God has in store for me.  I ask for continued prayers for my family that we hold strong in faith and hope.

 Hebrews 1:11 “To have faith is to be sure of the things we hope for, to be certain of the things we cannot see.”

Powerful Words

This morning I was soothed by the powerful words of today’s Jesus Calling devotion.  It was exactly what I needed to hear. Here is a portion of it “Do not compare yourself with others, who seem to skip along their life-paths with ease.  Their journeys have been different from yours, and I have gifted them with abundant energy.  I have gifted you with fragility, providing opportunities for your spirit to blossom in My Presence.  Accept this gift as a sacred treasure: delicate, yet glowing with brilliant Light. Rather than struggling to disguise or deny your weakness, allow Me to bless you richly through it.”

I still struggle at times with my lack of energy which causes me to miss out on certain events.  I continue to work on knowing it is okay if I do not accomplish as much as I desire in a day.  I needed to read these words as a reminder that even in my fatigue-laden state, that I can be used by God and can be considered a gift.  Of course, I also plan to throw these words back at the guys in my family.  Perhaps tonight when no one is preparing dinner, I will remind them how they have been gifted “with abundant energy” and that I need to let my “spirit blossom”  while resting on the couch!

Last week I had what I deemed my “lazy woman’s sale” to rid myself of my years accumulation of school materials.  I did not price anything, put the items in the garage, and left a donation jar.  The best part is I played with an adorable ten month old baby inside while my teacher friends shopped and then they came in afterwards to visit.  It was a lovely day and less emotional than I thought it would be.  I am able to listen to them talk about the upcoming  school year without sadness. God has healed me of the grief I felt at the loss of my speech language pathology work and has given me an idea for a new passion.  I will reveal this idea if it comes to fruition.

I am needing to take the pain medicine more regularly now. Being a teetotaler for many years, this is quite a new experience for me to not be in complete control of my thinking.  Last night after taking the meds I was determined to become a brunette to hide the roots and lessen the need for highlights. I was ready to make the purchase when a kind friend talked me out of it.  My family knows to not let me make any decisions in the first hour after taking these meds.

Surprisingly, I have remained peaceful while waiting for the results of the CT scan. Today my friend Jen is coming from Lansing and we are going to make zucchini bread and then sit on my Amish neighbor Fanny’s porch and visit with her.  Sounds like a lovely, “spirit blossoming” day!

My favorite verse this week:  Isaiah 42:3  “A bruised reed he will not break, and a smoldering wick he will not snuff out. In faithfulness he will bring forth justice.”

Family Camp XVI

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I am a week out from being at our 16th family camp at Camp Crystal in Frankfort.  There are not words to adequately explain the feeling of love, fellowship, and God-connections that occur at this place.  I think the most telling sign is perhaps that our largest age group for class (besides adults of course) is our young adults.  Yep, that means high school / college graduates still desire to return to this christian camp.

I had to approach camp a little differently this year as my physical limitations made getting to the dining hall and to the lake a challenge as both require climbing numerous steps.  However, it all worked out thanks to my niece Janel, who not only brought me a golf cart but decorated it princess style!

golf cart

Please note the amazing ladies in the cart who accompanied me to the many events around camp.  Phyllis, Gladys, and Alene are 80+ years old, so they were deemed my “Golden Girls”. I envy these ladies and their zeal for life.  Phyllis is 87 and recently returned from one of her frequent mission trips to Romania.  She happened to mention that if her knee wasn’t bothering her she would be horseback riding through the woods the following week. Glady’s “special friend” was arriving from California the following Monday and she was picking him up from the airport at MIDNIGHT.  I found this out after complimenting her on her beautiful manicure.  Alene is a socializer, and she was the one we usually were waiting for as she would lose track of time talking and loving on someone every place we went.  She rode in the back of the cart and would frequently see someone as we were pulling away and begin a conversation.  I learned to just keep the cart rolling for fear we would miss our next event!  Alene learned how to play the ukulele and a new dance step while at camp.

Before camp, I was feeling embarrassed about having to ride in the cart and even contemplated trying to manage the steps.  I am so glad I overcame my pride as I would have missed out on the fellowship of these three beautiful ladies.  Plus, when I gave a ride to three-year old Emmy, she proclaimed “only grammys and princesses get to ride on this”.  Guess which one I am.

I crossed off another bucket list item – random travel.  My friend Kim, four teens, and I were game to try it when stumped on what to do one afternoon.  It involved flipping a coin at each major road to determine whether to turn left or right.  It was a fun afternoon with some unique places we had never been to before.  They (not I) handled a very large pet rat, picked berries, and visited a native store (??) that was beyond explanation.

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One evening our teens planned and conducted the vesper service.  Three teens gave powerful testimonies about how their communities came together to show God’s love.  Hayden, a 17 year old young lady, who will be a senior at Lowell High School spoke about her schools’ Pink Arrow Pride.  Their goal is to raise funds and awareness for the treatment and cure of cancer.  Their motto is “we are a community fighting cancer”.  Hayden presented me with her pink arrow shirt that she wore last year in support of me.  The waterworks began.

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Typically there is sadness at the end of camp but this year I had a gift waiting for me at home.  While I was feasting on three hearty and delicious meals, relaxing on swings, and enjoying the fellowship at camp, my dedicated friends were slaving away at home turning my tragic bedroom into a crisp palette of grey (the “in” color,  you know) and white. This is my Summer / Fall project to turn my bedroom into the sanctuary it deserves to be, instead of the room that acquires all the leftover and hammy down belongings.  A big thank you to Lori, Laurie, Kevin and Nick for a beautiful gift. (No pictures yet as things are not complete for the final reveal – still need to get rid of the emerald green carpet).

My CT scan looms ahead on August 10th.  Ugh, I am annoyed by this test as I deem it pointless as I already know the tumors in the groin / thigh are growing as I can feel them.  I don’t want to know if cancer has spread to other places beyond here and the bone. Apparently, the scan is needed as a baseline measure before another treatment may be tried. I remind myself to be strong and to focus on what is immediately in front of me for the day. My discomfort from the tumors is unrelenting and evenings tend to be the hardest time for me as I am tired of dealing with it by the end of the day.   I know it could be worse.  Last night when I felt discouraged I was reminded of all I had already been through.  I began to thank the Lord for not having any drains, having a voice, walking without a walker, and being able to sleep on my side and stomach.  I need to remember to focus on the positives.

1 Thess: 5:8 “Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.”