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!

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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.”

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Taking it Easy

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My friend emailed me this quote, and it really resonated with me as this pretty much sums up my life lately. Bad habits die hard so I do still make a “to-do” list every morning. Yet I give myself grace these days on whether or not the items on my list are accomplished. I feel tired A LOT, and there seems to be no rhyme or reason as to how much energy I will have in a day. I do my tasks when I feel a burst of energy and rest when it leaves me. Last week a friend came to visit. I was so tired but didn’t want her to leave so she took a nap too. What a gift!

I do not have any appointments until the end of July and I relish this period of time when I can enjoy life without medical interference. Emotionally, I am doing well as I have been visiting with friends and family and have had many events to look forward to doing.  Yesterday was my oldest son’s 20th birthday, and it is hard to believe that I am no longer a mother to a teenager but a young man! I am so proud of who RK is today.  Not only is he dependable, hard-working, and resourceful, but he is caring as well.   His only flaw is that he never cuts his momma a break when playing Settlers of Catan, cribbage, Dutch Blitz, Last Word, Scattegories, etc. (you get the picture!).

This will have to be a short blog as Richard keeps eyeing the clock and then me in my pajamas.  He has given me a departure time for today and I think he is doubting I will be ready in time.  I need to prove him wrong. In leaving, I would ask for continued prayers for healing, the right medical plan, and ease of my discomfort.  So long, Pamela

New Beginnings

Different chapters in my life have closed recently, so I felt the title “New Beginnings” was appropriate.  A successful and proud chapter was parenting my children through their school years. When I was first diagnosed, I prayed that I would be able to see my youngest son graduate from high school.  At that time I had been reading about my type of cancer and it did not seem likely.  I have since learned not to search for answers in science but to trust in God who is the only one who knows the number of my days. So I proudly share these pictures of Drake’s graduation from high school.  As a  past school board member, Richard was able to hand Drake his diploma, which made it even more special.

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Another chapter that has come to an end is my work with Greenville Schools.  It is still hard to process even as I type this.  I submitted the paperwork for a medical retirement and felt as though I had come to terms with it as I removed everything from my classroom.  However, when the person from the retirement system called last week to tell me it was approved, I grieved all over again.  And then again when I submitted my letter of resignation. And then again when I heard another speech pathologist had been hired for my position.  I know many people dream of retiring and can’t wait, but it doesn’t feel that way to me.  I loved my job and being a speech language pathologist has been part of my identify for half of my life. Yet, I know this decision is what is best for my family and I.  I hold to the truth of Eph 3:20 “God can do immeasurably more than we can ask or imagine.”   Who knows what adventures lie ahead?

I also completed my last immunotherapy treatment this week without much fanfare.  I will have a scan in two months to determine its effectiveness.  I will continue the infusions of the bone strengthening medication every four weeks indefinitely. The positives on the medical side are that my thyroid levels are now in the normal range, I am gaining weight, and I am beginning to sleep through the night without medication.

Currently, I have way too much time on my hands.  This was evidenced by the enjoyment I received from “scamming the scammer”.  I frequently get called from a person with an accent who claims he is from Windows and that my computer has a virus.  This time I played along as I pretended to yell to Drake (who was sitting next to me) to bring me the computer.  We pretended to argue that he was using it and needed it.   Then we set the phone down with the speaker on and went about our business.  Oh how we laughed to hear the person on the other end saying “hello?”  “hello?” every so often.   I sucked a good two minutes of his time before he finally hung up.  This is what my life has become so I definitely need to get a hobby. Perhaps you have an idea on how I could more appropriately spend my “retirement.”    Just Pamela

Prov 16:9  The mind of man plans his way, But the LORD directs his steps.”

Chemo Ward

At my Lacks Patient Advisory Board meeting, a fellow patient dubbed the infusion room “the chemo ward”. After completing my third Yervoy treatment today, I agree that the name fits.  My luck ran out on having a private room as it was overcrowded in the infusion room due to the holiday weekend schedule, so I was out in the open among the other patients. While the nurses are kind and I enjoyed the conversation with the people around me, I am still bothered by the lack of privacy for personal information.  My neighbor declared “I am surrounded by spring chickens” after the other patient and I had given our names and birthdates before receiving our treatments. It makes me anxious to hear the issues that the other patients are experiencing as I wonder if I will have to go through it also.

The positive side of the “chemo ward” today was having my son Drake with me.  We watched the TV series Friends and would turn towards each other at all the funny parts.  It felt good to be smiling and laughing in that room where sickness reigns. I also met a man who spends his time painting during treatment.  He let me choose one of his small paintings before I left.  I chose this lighthouse to remind me that God can shine his light through the darkest of storms.

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I have experienced few side effects of the medication besides some fatigue and sun sensitivity requiring me to cover myself from head to toe when outside. I was going to say you may not recognize me with my hat, glasses, gloves, etc, but that may be the exact reason you will recognize me. I may be the only person hoping for rain on my son’s graduation day so the ceremony will be moved inside!

My difficulty is from the cancer itself.  There are tumors growing which are causing discomfort and at times sharp pains. It takes approximately four months before a response is seen with Yervoy; therefore, I am reminded that it may get worse before it gets better.  I try to limit certain activities that I know will cause pain, but I still get surprised by activities I take for granted.  On Monday I bought groceries.  I did fine picking out the groceries, but the pain started when I started putting the heavy bags into the cart.  I cried all the way home, not from the pain but from feeling needy.  I needed someone to help me get the groceries up the steps in my house as my family was gone for the weekend.  It is still hard to be dependent and to  ask for help.  Well, God sent me an angel alongside the road.  My neighbor Janet was walking along, hopped in my car, unloaded my groceries and even did my dishes.  Then we sat and chatted while drinking tea.  It is sort of like God “shined” his light through the darkness of that day.

John 1:5 “The light shines in the darkness, and the darkness can never extinguish it.”

Enjoying Each Day

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I have been doing really well these past few weeks.  The side effects from Yervoy do not usually happen for the first two to three weeks and then it becomes a cumulative effect with each treatment.   Therefore, I have felt the urge to do as many things as possible while I am feeling well.  I have a greater appreciation for each day.  I know I am suppose to be thankful in every situation but it sure is a lot easier when I am feeling better!

Last weekend I checked off another bucket list item – prom dress shopping! I love watching Say Yes to the Dress, Project Runway, and seeing the Best Dressed at the Oscars, so this filled my need for sequins, lace, and bling.  Penny, my son’s girlfriend, was very accommodating and tried on around fifty dresses.  (There could have been fifty-one dresses but I vetoed one on the rack and never showed it to her.  I figured my son’s hand has to set somewhere for the pictures and I want it to be on cloth!)  After many hours of zipping, snapping, and turning around in the mirror, she found a classy and elegant dress that fits her perfectly.

Punctuated between dress shopping, track meets, planning my son’s graduation festivities, and  end of the school year tasks, I have been trying to make some important decisions about work and my son’s college.  When I came across the saying at the top of the page, it resonated with me. Whenever I felt myself become stressed these past few days, I reminded myself that God is control, He knows best, and He will direct me.  (But the old me wants My answers and NOW, so again I grow as a person and a christian).

My next two infusions (Zometa and Yervoy) are May 1st and 4th.  It is easier now that I know what to expect, but I am still grateful to have a friends with me for them.

Is 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand. 

Making Memories

My family and I are so grateful for the opportunity provided by so many people to take a cruise to the Bahamas.  It came together in such a short time and everything that was needed to make it happen was provided, from borrowed luggage to a complete wardrobe.  While I may not have been able to participate in the shore excursions, I was a well-dressed lounger of the beach and cruise ship!  We had an amazing time, laughed until our stomachs hurt, and made wonderful memories together as a family.

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I am quite happy in this picture because I have my entire family with me (Richard is taking the picture) in the Miami airport. There was an issue in Detroit in which Drake and Richard did not get seats on the flight to Miami as the plane was overbooked and they were told they would need to take the next flight five hours later.  Fortunately, two other people gave up their seats for them (and $1,000 in airline credit) and I was overjoyed when they walked on the plane.  Take notice of that bright pink suitcase in the picture.  It went missing on the ship and I did not see it again until day 2 of the trip.   We had a rough start but the rest of the trip was smooth sailing:

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Here is our ship, the Norwegian Sky, in which we had the pleasure of staying in two balcony rooms.  Upon leaving Miami, I looked out from my balcony to see this double rainbow – a definite sign of good things to come.

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We spent our first full day snorkeling and at a private Lucayan beach on Grand Bahama island.  The boys played basketball and volleyball, while Richard and I sipped virgin pina coladas on a beautiful beach.

sub adventure

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Our second stop was Nassau where the boys were taken aback at the strong selling approach of the vendors.  Every few steps someone was offering them scooters and mopeds to rent, RayBan sunglasses, cigars, and “samples of party favors”.  (For the record, they declined all offers!) Most of Richard’s and the boys’ afternoon was spent on an underwater sub adventure while I spent the afternoon at the spa having a keratin treatment on my hair and a facial.  My guys grumbled about getting dressed up for the French restaurant Le Bistro but later claimed it was their favorite meal of the whole trip.

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Our last full day was spent at Norwegian’s private island, Great Stirrup Cay.  Richard and the boys had a blast on a jet ski tour while I enjoyed reading and doing crossword puzzles in a private cabana as waiters brought me food and drinks.  Check out the gorgeous view from our cabana.  There were some great reefs for snorkeling too!

Please accept our heartfelt thanks to all who made this experience happen.  I am overwhelmed by the generosity and eternally thankful to have made these wonderful memories with my family. Additionally, I came home feeling rested, relaxed, and ready to tackle the next step in this journey.

Today I began the immunotherapy treatment Yervoy. I naively thought I would go to work after the treatment was finished. However, I somehow missed during the education lesson that I was SUPPOSE to have someone drive me as I needed to take two Benadryl pills to prevent a reaction during the infusion.  My friend Laurie, who met me at Lacks for the treatment, ended up taking me back to her home afterwards so I could sleep off the Benadryl and safely drive myself home.  I will be better prepared next time now that I know all that it entails.

Psalm 18:32 “It is God who arms me with strength and makes my way perfect.”

Simply Obey

I was telling my friend that I had made a decision to start immunotherapy treatment as I felt God was pointing me in that direction but that I did not “feel” like doing it.  Sometimes you can know something is the right thing to do even though your “heart” is not into it.  I was quite ornery about this decision (for days).  My friend said her dad would tell her when she was a young girl to “simply obey”.  So I am going to “simply obey” the plan I believe God has for me, which involves four infusions of an immunotherapy drug over a twelve week period.  I will begin the treatments in mid-April at the Lacks Cancer Center.

Please pray that I would be able to handle the side effects of this drug.  It seems like right when I get feeling “sort of” normal again and I have adjusted to the changes in my body that it is time for another procedure. I now understand why they say “battling cancer”.