Long Past-due Update...

This summer has been filled with much joy for me.  Since the kids have been out of school we have instituted a summer schedule that includes a “kids in charge” time twice a week.  They get to decide together and agree on what activity we do during those afternoons. It has been so much fun to be with them doing what they pick and seeing their joy. We have made tie-dye t-shirts, so many cool crafts including our own lava lamps and ridden the log ride at the zoo dozens of times. It is such a treat for me to just be with them.  School starts next week and I can’t even think about it too much yet…this will be the first year all our kids will be in school at the same time.

My “clear scans” report at the beginning of June was a great way to begin our summertime season. Because of these good scans I was able to get a 6-week break from treatment. It felt like such a gift from God to get this break in connection with my kids being out of school.  To not think about Moffitt and allow my body time to heal was so nice. My thighs (where I receive 7 injections during each treatment) healed quite nicely. I went back on July 17^th and will go back once a month now until September when I get rescanned.  The outcome of these scans will determine next steps. 

Near the end of June, the kids and I took a road trip to Arkansas with my family to be with my grandmother as she celebrates her 90^th birthday.  We got to see family and friends I hadn’t seen in years.  All of her children, grandchildren and great-grandkids were present. A real treat to her, I think. We were only missing a few in-laws. It was great to give them good report of my health and of God’s faithfulness to me in so many ways.  During our trip, we made a pit stop at the U.S.S. Alabama, Battleship State Park in Mobile. My mom and dad had taken us kids there when I was around Miya’s age, in 5^th grade. It was fun to relive old memories and make new ones with my kids.

(The siblings and I recreating a 25 year-old picture on the USS ALABAMA)

We also went to the beach for a week which is a Becton family tradition; Three of my kids got the privilege of doing  an improv camp; And Miya is away at a church camp for the first time ever this week!  Busy, fun summer!

(Family Pic 2012: Ana, Miya, Ezra & Isaiah in standing order.)

As always, thank you for the ways that you remember my family in your prayers.  While living with Melanoma, I have come to the deeper understanding of the importance and the power of prayer and community. Thank you for supplying both of these things for us.

Love,

Jessica

P.S. I’m going to upload a couple blog entries in the next few days that I have been working on this summer but haven’t taken the time to make coherent yet. There is no specific order to these, just some topic I have been mulling over in my mind this summer. 

"Normal" Treatments

These days I find myself striving for a life that is pretty "normal".  OK, maybe "normal" isn;t the right word. I'm not sure many would look at our life as too normal, but uneventful nonetheless. I don't want to live as though I am in a battle for my life. Instead I try to live as if I don't have a life-threatening illness.  Living day to day in the reality that Jesus has my life. It is His. There is no fear of tomorrow. I don't know if this is sweet oblivion or stupid ignorance, but either way life goes on and so do I. There are even some days that I forget I even have cancer until my stiff neck or crooked smile catch my by surprise.

The kids are going hard at life.  We are in the midst of soccer season, school testing, award ceremonies and field trips.  The end of another school year is fun and exciting.  I love sharing the feelings of excitement and anticipation with my kids. There is a surprise field trip for two of them next Monday and I can't wait until they find out they are going!

As life goes on all around me I try to consume myself with the normal things there are abnormal events as well.  The major of those is my treatment which occurs every other Tuesday. I am a part of a clinical trial and yes, I am receiving experimental drugs (Jeremy's favorite thing to tell people). I go in early on the mornings of treatment for blood work then to see my doctor. They check me all over to make sure nothing has changed and that I am healthy enough to receive treatment.  Then I go downstairs.  I get a private room with a bed and a TV! There they start hooking me up to all the machines.  They make me take a variety of oral drugs to lessen the effect of a possible allergic reaction.  One of these is bennedryl which makes me very loopy and so sleepy. Then I wait 30 min before receiving an IV drug that is supposed to boost my immune system.  No allergic reaction so far. Next is shot time.  They place a huge bag of ice on my thigh to numb the injection sites. And after about 30 minutes of icing the nurse comes in with her 7 huge needles. She goes as fast as she can injecting the thick, syrupy liquid into my skin, but it is 7 shots and by the time she reaches the last one, my skin has come back to life and it hurts. There is blood and 7 bruised welts as evidence of her time spent with me. I go back to icing it and generally I have fallen asleep because of the drugs. 6 hours later, after monitoring my blood pressure and temperature I am able to go home. So far i have felt only fatigued, tired and medicated after treatment, but no serious side-effects. I go every other Tuesday for treatment until June 5th when I will get new scans. If all is well I will continue receiving treatments but less frequently.

I am grateful for so many things in life these days and this sort of treatment is one of those things.  I am so grateful to be able to life a "normal" life in between treatments.  I do not take this for granted as so many who battle cancer have their lives completely turned up side down. The day after treatments I am back to full-time mom, home-schooling and taxi-driver. It is a blessing.

Thanks for praying. More updates to come. :-)

Learning to See the Unseen

Jeremy and I made the nervous drive to Moffitt yesterday morning.  No matter how much I pray and worship the night before or the morning of, I am always a little bit anxious going back to that place.  I am still in bondage to the fear of receiving bad news. I know that no one there holds the key to death and life, Jesus has all authority in this life, but there is something about the place where I find out information about the disease. Where what was once unknown to me becomes known. As I've said before, I don't like surprises.

I was nervous; Jeremy was trying not to be. We listened to BBC radio report on the Republican Presidential Primary. All the insulting and debating sounds less annoying and much more dignified when it's done in a British accent, I thought.

The friendly valet greeted us and handed our claim ticket, Jeremy took my hand and led me toward the building. Even before entering I am assaulted by the sight, sounds and feeling of cancer. There are people sleeping in wheelchairs, too weak to walk as they are maneuvered outside looking for a breath of fresh air. Then there are those dependent on a tank of oxygen for the breath that gives them life. As we walk inside I see the women with scarves covering their balding heads in Starbucks.  Putting on their brave faces they order their coffee believing the disease of cancer has not stripped them of their humanity and need for daily caffeine. I want to think I don't belong here.

We get off the elevator to find another patient with a bandage covering a wound left after a cancer was gouged out of her face. My mind races again of the hope I know in Jesus contrast with the despairing nature of cancer. Do these people know?  Have they heard of the hope he brings?  How am I supposed to remain hopeful in the midst of all this? I can see the effects of cancer. It is real to me. I see the suffering, the pain, the death. But where do I see this secret hope that lives inside of me? How can I see it?  Again I feel like I don't belong.

Jeremy holds my hand, makes his usual jokes to lighten the mood and we enter the clinic. I am tense by this point. I know the hope that I have and yet the images of suffering and death seem too powerful. I am relieved to see the waiting room is empty. I bury my head in a book.

As I am checking in, the woman who I do not know says that she remembers seeing my name somewhere else in the clinic that morning. She gets up and comes back with a small book called "Puppy Love". As I open it, confused and searching for who could have left this for me I see a note. E, a woman who has been attending our homechurch for only a couple weeks, works at Moffitt and has left that book for me "knowing that I might need an extra smile for the day." I did smile. And I whispered a prayer of thanks to the one who really knows I needed that extra thoughtfulness today. I am seen.

Later, I see a nurse who I've not seen since the day I was told my cancer had returned.  He was the coordinator of the first trial I was in at Moffitt. He remembered me and came to ask how I was doing. I felt cared for and whispered a prayer of thanks to the one who knew I needed to be remembered today. I am remembered.

After a while we signed the consent forms for the clinical trial. We worked out a schedule and even a start date. The staff and my team of doctors and nurses are wonderful. They are so flexible and considerate. I whispered another prayer of thanks to the one who cares intimately for me through such wonderful people. I am loved.

No surprises; we left feeling much relieved and hopeful- a great contrast to the feeling I entered with. God does see me. He is with me. It is evident through E who left a gift for me and through the nurse who remembered me and through my care team who makes me feel so cared for. God is reminding me of his presence in dark places. Even where it seems that cancer is winning among the images that death is real, God is present. His loving kindness surrounds me. If my cancer does return or I do receive bad news somewhere along the journey, I must remember these moments and remember that He is with me.

A few weeks ago I was at a birthday party for a classmate of one of my sons. The kids were all playing and having a blast. I started talking to another mom of a different classmate. I struck up a general conversation like I am fairly comfortable doing, asking her polite questions about her kids, where she lived, how she liked the school. But then I asked her where she worked.  I was surprised and actually a little glad when she replied, "Moffitt".  Yes! Instant connection. I told her I was a patient there and we talked a bit about what was going on with me.  Then, I asked her what area she worked in. She told me that she used to work in patient care, but just recently she transfered to research. In particular, she is working with "Phase I vaccine and immune-response trials".  My jaw dropped and a smile escaped my lips as I told her, "I am going to soon be one of your guinea pigs." What are the odds that a mom of my kid's classmate would be working on the trial I'm starting?  I smile as I recognize God's fingerprints all over this new relationship, excited about the possibilities of doing his work. This is seen hope.

Last week I was pretty sick with side effects of the radiation. My throat was ulcerated. Swallowing was extremely painful, so much so that I preferred to spit in a cup rather than swallow my own saliva. The pain medication they gave me made me sick to my stomach also. I decided I would just rather not swallow or eat than have that feeling. But in the midst of a week of sickness I also found out that a new donor added to our support team. (Jeremy raises support, like a missionary, for his work for the Underground.) This donor had decided to give in the exact amount that we need to cover our yearly medical deductible! When I found out I was floored. God sees again. He provides again. He continually reaches down and places good gifts in my lap.  Again and again. His mercies never cease.

A community that constantly checks up on us and loves us through gifts and by loving on our kids; Strangers who have heard of our situation and send me notes from out of state saying they are praying on my behalf;  Old friends from college who organized and supplied a surprise trip to NYC for Jeremy and I next weekend; Meals, encouraging conversations, life lived with people who care. In the midst of suffering, there is a peace and a joy that comes to me through all these things. I must, I simply must allow myself to connect these gifts to the one who gives all good things.

For the one, who like me who is known by my Father in heaven it is true:

"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 

(2 Corinthians 4:17-18)

God, help me to fix my eyes on the unseen eternal things of your kingdom. Help me to learn to see the unseen.

monuments for remembering

A couple weeks ago I returned to the dermatologist's office where all this began. Four months ago I had walked in as a better-than-average healthy woman to get an "annoying" mole removed without the least bit of worry or concern. I remember they had called me to come in earlier than expected to get the results of the biopsy. Even if it was some type of cancer I never thought it would be life-threatening. As I sat in the chair waiting for the news I whispered the prayer, "Whatever this is, whatever they say, I know that You and I can handle this together." But when the news came, the sweet peace of trust in my God vanished and panic set in. I remember sitting there in total shock, my mouth went completely dry. I couldn't move. All I could think of was telling Jeremy and my kids that I was going to die.

Now, I went in to that same office as a cancer patient having undergone two surgeries, too many scans and blood draws to count, one dose of a crazy drug, radiation on the upcoming schedule and a newly developed education of cancer. What a difference four months makes.

I couldn't help but remember the last time I was there.  Retracing the steps of the day my whole life took a dramatic turn.  This time, sitting in that same chair, I stared at that same wall and prayed, "Thank you, Jesus, for being with me during these past months. I am so glad we have been through this together.  You have never left me, nor forsaken me.  You have given me good gifts time and time again. I trust you more today than I did four months ago. I wouldn't trade this experience for the world."  What a difference four months makes.

I am grateful for all the things I have learned about myself, my faith and my God in these past four months.

I write this today to remember.

Becoming Darth Vader?

No, I am not becoming a scary, evil, ego-maniac. And I am not turning to the dark side. But I do have a mask now that will immobilize my head and neck during radiation treatments.  My kids and Jeremy think this is quite fun.

Jeremy finds great humor in making light of the situation. Humor has always been his coping mechanism for tense or stressful situations. I remember getting so mad at him in the early years of our marriage especially because in the middle of a fight or an argument he would just start laughing! He told me it was because he would think about the futility of our current prediciment, have the confidence that we would move past this as well and want to ease the tense moments.  A chuckle or smile would often sneak out at an inopportune moment for me, usually right at the climax of what I was saying, the most important point of my side of the conflict, of course, usually filled with great emotion on my part, he would smile at me and start laughing!  It would make me sooo mad mostly because I was insecure and thought he was laughing at me.  Now, many years later, I can appreciate his humor during our conflicts a little bit more. (Yes, he still does it at times.) I am also a little more secure in our relationship and in his commitment to me. And now, facing this trial, I'm actually beginning to love it.

At my most recent Moffitt appointment I had a radiology simulation.  They ran me through the CT scan machine again to get some good pictures of the area to be treated.  The doctor will use these pictures to make the treatment plan for my radiation. They also made me a mask. It looked kinda like a flat bust of white plastic mesh.  Then they put it in some kind of warm, watery solution and it became mold-able. They put it over my face and shoulders, attached it to the table I was lying on and molded it to my face and neck.  As it cooled, it hardened creating a 3D replica of my face. Kinda scary, and a lot like Darth Vader. They did the markings on this mask too, which I am grateful for so they didn't have to tattoo my face and neck :-) Now we are just waiting for the Radiologist to get that treatment plan done so we can get started.  I'm hoping to hear from them this week.

Treatments should only last 15-20 min and I should be in and out of there in no time at all really.  They are talking about doing an every-other-day high dose treatment for 2 weeks.  With radiation completed I will go back to see my medical oncologist (Dr. K) and we will get re-scanned and started on some new drug therapy.

Yes, of course Jeremy asked them if I get to keep it when we are done and they said, "yes".  What we will do with it then I do not know.  Maybe if I were more creative I could make it into some really cool art deco piece...

Thank you for praying and laughing with us along the way.
Jessica

Itchy

Itchy. That's how I describe my state of being when Jeremy comes home every day and asks me that predictable question: "How are you?". "Itchy", I say.  It's true. Since the day after surgery, I have been so.  And it's been spreading. Down my back, across my chest, around to my belly, my thighs and the backs of my knees too.  I thought it was an allergic reaction to anesthesia or pain medicine, but having been off both of those for over a week now they're not a likely culprit.

Ippy is though.  Ippy is a drug.  It was the first (& the only so far) drug they gave me as a part of the research study I was a part. It is an FDA approved treatment for people who have Stage IV disease, meaning the cancer has metastasized to a distant location in the body. In some people, the drug has been shown to shrink and even get rid of these distant tumors.  The study I signed up for was designed to test if Ippy would have the same effect on people that may or may not still have cancer cells, attacking them before they show up in that other location. 

I was excited to get the drug through that study.  It was also free since it was for research.  But since my cancer came back, I am disqualified.  I only received one dose, in early December. No one knows how many doses a person really needs to kick their immune system into hyper-drive (essentially what Ippy does).

Anyway, now I've broken out in this non-relenting itchy rash, one of the side effects of the Ippy.  Is it working?  I don't know.  I guess it's good news that my immune system is doing something.  Going crazy.  Hopefully learning to recognize and destroy any stray, rouge cancer cells that may remain in my body.

This has become a constant reminder of a deep work inside me, taking place where I cannot see.  I can't help but think, what other work does Jesus want to do, deep in my soul, where I cannot see?  What rouge remnants of my flesh given over to sin does he want to destroy?  What is hidden to my eyes yet visible to his Spirit working in me as I ask him to refine me, renew my mind, and heal my body of the cancer of sin that eats away at my being and destroys my intimacy with God. As I hope to even handle this suffering in a way that honors him and bring glory to his awesomeness, I must allow for and desire his work in my spirit too- not just in my physical being. Molding me, shaping me inside and out to reflect his Kingdom.

I was asking Jeremy last night, wondering how long I will wake up in the night itching myself involuntarily.  He said, "I hope for a long time."  Maybe it's working, maybe it's not. Regardless, I'm itchy. And I'm not sure I want it to go away.

Healing Waters

Thank you again for your prayers and concern for me. I am sorry to be so long in updating you in this fast-paced adventure. I am recovering well from surgery. Unlike the majority of cancer patients that I see and meet, I have youth and a strong body on my side. I am bouncing back quickly; feeling stronger and more like myself every day. Jeremy and the kids are doing an amazing job caring for me. Papaya is managing the kitchen and dishes for me; Banana has done the laundry; The Boy likes to bring me food, and then asks if he can share it; Fez likes me to send him on small missions where he can quickly accomplish small things for me. Jeremy is very attune to my needs. He wants to help and even anticipate anything that may cause me stress and preemptively take it off my plate.  That leaves him spinning many oddly shaped and patterned and mismatched plates himself.  I hope to be well enough soon to take back some of the extra he has taken on.  I'm looking forward to returning to the world of driving adults this weekend. Our wonderful community of family and friends has supplied us with meals, kid-care, rides and gift cards that make day to day life easier to manage for a lame mom. I'm pretty sure the kids ate better last week while I was in the hospital than they usually do. And it is such a treat for them to get to spend extra time with Grandparents and friends.  I am truely grateful for the care of the Father that is manifest in so many who surround us in this trial.

Things are moving along quickly in the cancer world as well. I saw the surgeon yesterday who removed all bandages, stitches and that horrible drain. I promise that thing was causing me more discomfort that the incisions. I am feeling so much better now that I am free from all that excess; I'm even off all the pain meds.  The pathology from the hospital said there were 4 nodes affected by the cancer this time, the largest of which, the one I felt, was 4.2cm. Quite large to have grown in just a little over a month. One of the nodes was on top of a part of a nerve to my shoulder. He cut out a part of that nerve. Time will tell how the movement in my left arm will return.  I can already lift my elbow to shoulder height and touch my head.  I can live with that. But he is not optimistic, rather realistic, saying this is an aggressive cancer and the prognosis is not good.  But we already knew that. I know it is a part of his job to give us the facts so we thank him kindly and go on trusting that Jesus holds all things in his hands...no cancer is more powerful than He.

They are recommending that I do a few weeks of radiation therapy this time as soon as I am healed enough.  I will meet the radiologist on Tuesday to see what he recommends and find out more about what this new treatment entails. After that there will be another drug therapy of sorts that they are working on getting me signed up for.  I believe it is another clinical trial.  They are hopeful.

Before surgery, everything was so rushed. The shock of finding out it had some back so quickly, getting to this place and that, waiting impatiently for results and anxious to get this cancer cut out of me, praying for miracle after miracle.  Now, I feel very relaxed.  I still want to move things along at a high speed (I would begin radiation this week if they would let me, and Jeremy will not let them dilly-dally), but I feel content, peaceful.  Because surgery requires rest to achieve intended health and healing, I am allowing myself more time to sit, reflect, worship and pray.  Every time I pray I see this image of Jesus smiling at me.  And there is overwhelming joy that I cannot contain.  Smiles in the midst of tears. I think he is telling me again and again that he is pleased with me and that we are right where he wants us to be.  He has not forgotten us. I am overwhelmed with his presence, getting small glimpses of his eternal perspective of my life and this trial. It's all I can do to just smile, cry and immerse myself in the deep waters of his healing love.  It is so calming and hopeful. I am blessed to have the time to wade around and soak up all of the goodness. An old hymn I used to sing in my parent's church as a kid and recently heard again has been rolling my mind today.  I leave it with you as a picture of His love and how I am drowning in it with joy.

"O the deep, deep love of Jesus, vast, unmeasured, boundless, free!
Rolling as a mighty ocean in its fullness over me!
Underneath me, all around me, is the current of Thy love
Leading onward, leading homeward to Thy glorious rest above!"






  

God Provides

I am in awe.  God is mighty and powerful.

The cancer in the lymph nodes of my neck is aggressive and strong. The doctors are surprised it is back so soon and is already so large. But my God is stronger and He is not surprised.

We prayed for an earlier appointment with the surgeon; we were given an appointment a week earlier.

We asked for a surgery date for next week even though we were told that some people wait for a month; I am scheduled for Tuesday.

We need to get a certain scan before surgery is preformed, we were told everything is booked til next Thursday; I am going in tomorrow for that scan.

I am ecstatic.  We have asked Him for these good gifts and he has heard our prayers. It reaffirms my knowledge that God is in this whole situation.  That he sees small, little me with my cancer. He hears my cries for mercy and for his help and he answers. I feel like a kid on Christmas morning who has just been given the best gift EVER.   There are so many problems in the world, so many people crying out to him, why me, O God?  Why have you chosen to answer my cry? Your grace is indescribable.

I am grateful.  Grateful to be known by the Creator.  Grateful to be known by so many who are also his children.  Grateful to be at peace in this place that he has brought me to today.  He is good.

I will go for that scan tomorrow.  They will be rechecking the right side of my neck. We are praying and are hopeful there will be no sign of cancer.  They will also be looking at my liver.  There may be a small abnormality there.  That is fine as long as it is not cancerous. We are praying for mercy again from our Provider.

My faith is strong.  My peace is real.  My foundation is secure.  The one who hears will sustain us through this trial.  He is in this.  He sees.  He answers prayer.  Thank you, Mighty One. My life is yours.