The Cost of My Cure

I've reached my chemo midterms. Not only am I dealing with side effects and the regular sickness, but it's almost comical how there has not been one week of 2013 where the Cooper household has been free from illness and trips to some sort of medical professional or pharmacy. We've had multiple rounds of ear infections--all 3 boys have had single or double ear infections at least once. There has been the occasional upper respiratory problem with each of us, and at least 2 of us have not been able to shake that tell tale cough. Even when all started to seem well in the health department, we've made trips for well-checks/immunizations and one trip to Urgent Care for pink eye! At least nothing is dull around here.

Other than the inconvenience of sickness and trips to doctors and other appointments, the worst thing is all of this is the cost--both the drain financially and the frustration of trying to sort out and organize insurance claims, payments and refunds. I'm sitting here drowning in a sea of receipts and claim forms (55 pages of claims that have been processed so far), attempting to make sense of it all so that I'll have all of my information together to back up proof of the overpayment, in some cases, in order to send payments to cover outstanding balances. I'm also supposed to do all of this in between changing poopy diapers, playing Candyland, fixing mac and cheese, and keeping out of the way of the workers who are replacing cracked floor tiles.

So far this year, I have been to the following appointments and procedures:
1/14--mammogram, Cy Fair
1/16--biopsy, Cy Fair
1/17--follow-up appt. with Dr. Schmidt--diagnosed, Methodist West
1/17--initial appt. with Dr. Pollack, Methodist West
1/18--initial appt. with Dr. Naqvi, Houston
1/22--Pollack pre-surgical appt., M.W.
1/23--CT/PET scans--Excel, Houston
1/24--follow-up with Naqvi, M.W.
1/24--cardiologist--baseline echo, Christus St. Catherine
1/25--port surgery, MW
1/30--first chemo,MW
1/31--shot, MW
2/1--blood work, MW
2/5--chemo, MW
2/6--shot, MW
2/8--blood work, MW
2/12--chemo, MW
2/13--shot, MW
2/15--blood work, MW
2/19--chemo, MW
2/20--shot, MW
2/22--blood work, MW
2/26--chemo-MW
2/27--shot, MW
3/1--blood work, MW
3/5--chemo, MW
3/6--shot, MW
3/8--blood work, MW
3/12--chemo, MW
3/13--shot, MW
3/15--blood work, MW
3/17--appt. with Naqvi for possible blot clot, MW
3/18--ultrasound on arm, MW
3/19--chemo, MW
3/20--shot, MW
3/22--blood work, MW
3/26--chemo, MW
3/27--shot, MW
3/28--cardiologist for midterm echo, CC
3/29--attempted blood work, but closed for Good Friday, MW
4/1--2nd attempt for blood work, MW
4/2--chemo, MW
4/3--shot, MW
4/5---blood work, MW
4/9--chemo, MW
4/10--shot, MW
4/12--blood work, MW
4/16--chemo, MW
4/17--shot, MW
4/19--blood work, MW
4/29--ultrasound, blood work, MW

Summary:
2 trips to Cy Fair--13 miles x 2= 26 miles
2 trips to Christus St. Catherine--16 miles x 2= 32 miles
1 trip to Naqvi's Houston location = 20 miles
1 trip to Excel = 20 miles
45 trips to Methodist West--17 miles x 45= 765 miles

total miles traveled to date: 863
My Tahoe gets about 15 mpg, and gas is, what?...$3.00 per gallon? Add that to the list of expenses.

As you can see, it was a tough first quarter for Cooper & Cooper. The bills are piling up, but the tumor is shrinking. We've met my deductible ($3,000) AND my total out-of-pocket cost for insurance ($6,000) so the good news is that the rest of the year is pretty much care-free, medically speaking. Now I just have to sift through the confusion of what seems like a million appointments and procedures, all filed out of order and at different stages of the insurance company being caught up on facts and figures. We were paying everyone we saw at the beginning of the year, knowing we had a large deductible to meet. What we hadn't counted on were all the costs and specialists working in labs and behind the scenes, still billing. In the confusion, many people were overpaid. For example, we paid one lab over $400, and the actual amount we should've been billed was $19.01. I have the lovely job of now trying to work that all out and to fight to get refunds in order to pay other balances.

And tomorrow the hard chemo starts. Like I said, it's never dull around here.

Checkpoint Ultrasound

I'm often asked, "why are you doing chemo before having surgery?" Apparently, this approach to the treatment of breast cancer is fairly new, but it makes sense. By leaving the tumor in while receiving chemo treatments, the doctors are able to have baseline for comparison throughout the process.

Today I had a midway ultrasound to check how my chemo is working and to do a follow-up comparison to my mammogram, previous ultrasound, and other scans. The good news is that the chemo is doing its job!

The radiologist told me today that she will write up an official report for Dr. Naqvi to review with me at my next appointment, but what she told me seemed very positive. The previous mammogram showed my tumor and all the area of calcifications to span about 12 cm. The ultrasound doesn't pick up all of the areas of calcification as well as a mammogram would, but it did show that tumor in my left breast itself is significantly smaller. There still is one fairly large area in my axillary lymph nodes that appears to still be enlarged, but overall, the size of my tumors has decreased.

It's nice to hear some good news and to have more of an assurance that these unpleasant treatments are having positive results!

Tuesdays with Naqvi--12

I've made it to the end of the first milestone in this journey! The 12th of 12 weeks of Paclitaxel are complete! It is only through the support, love, encouragement, service, sacrifices, and blessings from others and The Lord that I've made it to this point with so much strength and have been blessed with a will to be a survivor.
I would never describe this journey as easy. There are more difficult parts to this challenge than I can explain, especially since I'm having to bear this burden while watching my young children experience the pain, sadness, and heartache, too. I was asked at my son's yearly check-up the routine question, "Are there any stressors in the home?" and had to smile and answer, "YES!!" somewhat sarcastically, since the medical staff there, too, knows the cancer struggle we are all currently enduring. It breaks my heart to realize that my children understand that I have to "go to the doctor" too often for so long, and they don't want me to go. I've heard, "I want to hold you," {I want you to hold me} more than usual in the last few weeks from the 3-year-old and more outstretched arms from the baby with his signature, "AHHHHHHHHH....," meaning he wants me to hold or kiss him....or basically just give him whatever he wants at the moment. Someone in the house has been sick at any given time since the beginning of the year. The financial burden is stressing. It's easy to get down from a physical standpoint, to feel tired and to lose the image of self worth and beauty. There is an incredible time commitment to this treatment process. It takes a toll on my ability to go places, to fulfill assignments, to accomplish tasks, and to be and do everything I want to do. I have felt tired, run-down, in pain, sad, frustrated, afraid, confused, and upset. However, in all of this, I have felt so blessed, so uplifted, and have felt almost a lightness, whether in the chemo made easier for me to bear, my body being able to withstand it better than some, or having my path made a little easier. I cannot believe how quickly 12 weeks has passed and how much easier--in many ways---this time has been than I originally expected. In the lightness of this trial, I can feel the light of Christ.

Another of my favorite talks from our church's recent General Conference was called, "The Hope of God's Light," by Dieter F. Utchdorf. I cried when I heard his words and was immediately drawn to the image of light, to his metaphor for God's light in my life at this moment, and in how this light can help anyone, no matter the challenge. His words speak for themselves:

"To me,...darkness and light....are a metaphor for life. It is part of our condition as mortal beings to sometimes feel as though we are surrounded by darkness. We might have lost a loved one; a child might have strayed; we might have received a troubling medical diagnosis; we might have employment challenges and be burdened by doubts or fears; or we might feel alone or unloved. But even though we may feel lost in the midst of our current circumstances, God promises the hope of His light—He promises to illuminate the way before us and show us the way out of darkness."

My darkness now is a troubling medical diagnosis, but this is not the only challenge in the world.  There are so many other hard things people are going through, and each is difficult for the individual experiencing that trial. Everyone has been or will be in darkness from time to time. I'm reminded of a scene from a movie I love to quote, Three Amigos, when one of the Amigos is trying to rally up the troops to stand up and fight their battle: "In a way, all of us has an El Guapo to face. For some, shyness might be their El Guapo. For others, a lack of education might be their El Guapo. For us, El Guapo is a big, dangerous man who wants to kill us. But as sure as my name is Lucky Day, the people of Santa Poco can conquer their own personal El Guapo, who also happens to be *the actual* El Guapo!" We don't always know why trying times come over us, but what we do know is that everyone will experience trials, darkness, or their own "El Guapos," but we all will be able to overcome. There is light at the end of the tunnel, even if we can't always see it!

During the times of darkness, the best way to overcome is to find the light. There is something to be said about the power of positive thinking, playing "The Glad Game," and finding the silver linings, the "tender mercies" of life. As President Uchtdorf said, the "best path for healing [is] to understand and accept that darkness exists—but not to dwell there. For...light also exists—and that is where [we should choose] to dwell." Nothing good can come from moving toward darkness or even sitting still in the darkness for long periods of time. If we are not moving forward in life and improving, we are often falling behind and losing strength.

One way to look for the light is in serving others. I know it's a simple thing, but I have felt impressed to write and share my thoughts of this process as a way to be a light for others in conquering their own darkness {El Guapo.} In Elder Uchtdorf's talk, he referenced a woman who became a schoolteacher after overcoming her dark time. He said, "she builds, strengthens, and inspires everyone around her."  I related to the teaching part as well as to the way he phrased his praise of her.  It immediately reminded me of a phrase from of a very special blessing I was given when I was 17 which says, "live so that you can touch the hearts, build the hopes, and teach mankind.....be a light unto mankind through your teachings and goodness."  In the same way as that schoolteacher, I'm hoping that by sharing my journey, I can share "that healing comes when we move away from the darkness and walk toward the hope of a brighter light," as Uchtdorf phrased it. 

The "hope of a brighter light" is always found in Jesus Christ. A scripture I love says, "Behold, I am Jesus Christ, the Son of God. I am the same that came unto mine own, and mine own received me not. I am the light which shineth in darkness, and the darkness comprehendeth it not." {D&C 6:21} When we look toward The Light, we will never be in complete darkness. Elder Uchtdorf explained, "There may be some among you who feel darkness encroaching upon you. You may feel burdened by worry, fear, or doubt. To you and to all of us, I repeat a wonderful and certain truth: God’s light is real. It is available to all! It gives life to all things. It has the power to soften the sting of the deepest wound. It can be a healing balm for the loneliness and sickness of our souls. In the furrows of despair, it can plant the seeds of a brighter hope. It can enlighten the deepest valleys of sorrow. It can illuminate the path before us and lead us through the darkest night into the promise of a new dawn."  Faith in Christ can bring a light to whatever darkness that currently surrounds us. 

This morning as I was getting ready to leave for my final steps to the first checkpoint of what we've called a "marathon," I couldn't help but respond to the tragic events surrounding yesterday's bombing at the Boston Marathon, which was definitely an act of darkness.  Terrible choices and dark acts affect innocent people in this world.  Because we all have agency, the gift to make our choices, we sometimes bring great sorrow and darkness to the lives of others.  God can't force people to choose the light.  As has been said, darkness exists along with the light, and even though I know and many others know that it is best not to dwell in darkness, but to seek the light always, there are many of God's children who actually choose darkness and attempt to spread it.  We cannot legislate the darkness away to bring out the light.  We cannot regulate those who choose darkness to prevent darkness from spreading.  We cannot identify all the sources of darkness before they act or guarantee that there will never be days of darkness.  But, hope is not lost.  As one New York artist illuminated on the Brooklyn Academy of Music, "Darkness cannot drive out darkness; only light can do that." {MLK Jr.}  We don't have to identify all the sources of darkness, for we know The Source of all Light is Christ, and faith in Him allows us to believe that good will win in the end. 

We are not promised a life without heartache, pain, challenges, sorrow, and difficult times, but we are promised that we will never walk alone and that there will be great blessings for walking in the light.  There is plenty of darkness to be found in the world and plenty of promised dark hours and even days ahead.  President Uchtdorf testified, "from time to time our lives may seem to be touched by, or even wrapped in, darkness.  Sometimes the night that surrounds us will appear oppressive, disheartening, and frightening.  My heart grieves for the many sorrows some of you face, for the painful loneliness and wearisome fears you may be experiencing.  Nevertheless, I bear witness that our living hope is in Christ Jesus!...With Christ, darkness cannot succeed. Darkness will not gain victory over the light of Christ."

John 8:12 says, "Then spake Jesus again unto them, saying, I am the light of the world: he that followeth me shall not walk in darkness, but shall have the light of life."  1 John 1:5 adds to that, "This then is the message which we have heard of him, and declare unto you, that God is light, and in him is no darkness at all."  As difficult as it may seem at times to avoid the darkness--whether that darkness comes from our own personal El Guapo or from the evils of the world--we must choose to not focus on the darkness or dwell in it; for nothing good or praiseworthy comes from the darkness.  Our hope comes from seeking for and moving toward the light.  The wonderful thing, as Uchtdorf explains, is that "We don’t have to wait to cross the finish line to receive God’s blessings. In fact, the heavens begin to part and the blessings of heaven begin to distill upon us with the very first steps we take toward the light."  My marathon isn't complete, but I've made it through a portion of the journey and have been able to experience some of that light.  Some runners in the Boston Marathon weren't able to finish, but their efforts and their experience was not in vain and do not go unnoticed.  Those who were taken too early from this life are not in darkness, although there is plenty of grief in their tragedy.  The light is always there, ready to be found, even if the only way to see it is to close our eyes and pray.  We will never walk in darkness for long when we are looking to The Source of all light, even Jesus Christ.

   

Tuesdays with Naqvi--11

Only ONE MORE to go, and then I get a break!!!

As I sit here hooked up to chemo, I can't help but be reminded of being hooked up to an IV and an epidural exactly three years ago today, anxiously awaiting the birth of our second son. The drugs are much different today than they were in the delivery room back then, and the reason is much less desirable. How much has changed in just three short years!

As I wind down to the end of this first part of the journey, I am having more and more days when I'm just tired. It's not a feeling like being tired from lack of sleep, but simply exhausted physically, mentally, emotionally, and even spiritually. I have to remember to rest, relax, and renew each day, whether in bath time, nap time, letting things go in order to be with my children or family, making plans to go out with Stephen, going to bed early, or taking medicine to help with a list of the interesting side effects of chemo.

This weekend was an especially renewing time. We spent a lot of time with family, we stayed close to home, I got to finish a major decorating project I've been saving for and planning for months, Stephen and I had a great date, and we were all spiritually fed by listening to many, many uplifting and enriching talks in our church's Semi-Annual General Conference. There are many reasons we are reminded over and over to feed our souls and renew our spiritual strength, and one is that building on the Rock of our Redeemer is what helps us survive the storms of life. We can do all things through Christ; all things are possible to those who believe.

As with all General Conferences, there are certain speakers, certain talks that stand out to each individual. One for me this session was a talk by Jeffrey R. Holland. He spoke about a bible story of a father pleading with Jesus to heal his son. Elder Holland summarized the father's plea: "Our whole family is pleading. Our struggle never ceases. We are exhausted....We don't know where else to turn. Can you help us? We will be grateful for anything: a partial blessing, a glimmer of hope, some lifting of the burden...." This modern day expansion on a scripture from Mark 9 really struck me, since I can relate---and probably so can my family. We are starting to get exhausted. There are times when we desperately need a glimmer of hope, a small blessing, or some relief from the stress and pain. I immediately began to relate to the scripture story in a new way.

Mark 9:22-24 {the father speaking to Christ} "If thou canst do anything, have compassion on us, and help us. Jesus said unto him, if thou canst believe, all things are possible to him that believeth. And straightway the father of the child cried out, and said, with tears, Lord, I believe; help thou my unbelief."

I've heard this story many times. Now I'm living a version of it.

There are days when I, like the father of the child, need to ask the Savior to help me--not only with the trial itself, but in my unbelief surrounding this trial. I am not near death or falling in fire, but the fire of chemo still burns. I have had to rely on the help of others and in being blessed with strength from the Lord to go through chemo and still be able to get out of bed and live without getting totally exhausted and losing my identity in life and with my family. Sometimes it is extremely difficult to not be consumed by questions of "why?" or feelings of doubt and fear. I constantly need to focus on the Savior and how He knows how to
"help my unbelief," and there are times when it's important to focus on my strengths and hold fast to to good things, not the limitations. Elder Holland described it in this way: "In moments of fear or doubt or troubling times, hold the ground you have already won, even if that ground is limited. When those moments come, hold fast to what you already know and STAND STRONG."

I had forgotten that the well-known biblical description of faith as a mustard seed comes directly from this story. A father's desperate plea, his acknowledgement that he had only a desire to believe and needed complete help from The Lord, gave us the story of a tiny seed growing into something much grander, making nothing seem impossible.

I find times--like my current test of faith--when it seems like my faith is too weak to accomplish all I need it to. Elder Holland advises us for such times, "when problems come and questions arise, do not start your quest for faith by saying how much you do not have. Be true to the faith you DO have." What a simple yet complex message!

How often do we start off questioning or complaining, trying to describe the difficulties and focus on the negative? It is so much more uplifting to focus on all the good things we do have and on the positive. Negativity and questions of doubt only worsen difficult situations. Elder Holland continues, "do not let questions stand in the way of faith working its miracle; you have more faith than you think you do!" As we start out wherever we are, trying to be better and do more and become stronger, we do, often in ways far beyond what we could have ever imagined.

But, this work is not done by each of us by our own merit or totally by our own hands. When we start thinking we can do anything on our own, we miss the point of this life, which is to learn to serve others and learn to be served BY others. Elder Holland reminds us: "When doubt or difficulty come, do not be afraid to ask for help.....God will send help from both sides of the veil to strengthen our belief." We have angels, both earthly and heavenly, that are ready, willing, and waiting to offer help when needed, and sometimes all it takes is for us to "straightway" ask for it.

Life is hard. We all go through trials, tribulations, and terrible times because we all have to learn in this life to walk by faith. The more I come to terms with my own unique current trial of being a young-ish wife and mother with cancer, trying to be strong and stand as a witness throughout, I have come closer to understanding how universal trials are. Each of us, at any time, can be pleading with The Lord to "do anything, have compassion on us, and help us." The cancer for one may be the infertility, the loneliness, the abuse, the poor living conditions, the unemployment, the death of a loved one, the addiction, the struggle for identity, the unfulfilled desire for marriage, and so on, for another. No matter what trials we face, our belief--and acting upon that belief--can get us through. As Elder Holland said, "Belief is a precious word and an even more precious act. Christ himself said, 'be not afraid--only believe.'" When we believe that help is there when we ask for it and show our faith in the source of the help, anything is possible.

I love Elder Holland's final thought. He leaves us with a pep talk for our own difficult times. "Hope on..... Journey on, honestly acknowledging your questions and your concerns, but first and forever fan the flame of your faith because all things are possible to them that believe." When the Savior and His servants say ALL things, that includes whatever each of us are striving to conquer, so there are no excuses. All things are possible to them that believe.

Jane

Stephen went out with another woman Friday night--Jane. 

Jane joined the boys all dressed up for Easter. 

We have a red head and a brunette, so I'm thinking the next new woman is going to be blond.  It's going to get harder to keep all the names straight, so it's a good thing the face is the same!  

Tuesdays with Naqvi--10

I'm only 33 years old, and my brain is having a hard time making my hands work.

It took a good part of 30 minutes and pure will to clip the boys' fingernails Saturday night, and I must have performed a Jedi Mind Trick to button shirts and put on their ties for church on Easter Sunday. I am used to having to put forth extra physical effort to compensate for the weakness of my hands as it is, but now there is a disconnect between the messages my brain is sending and the ability of my extremities to accomplish said tasks. Plus, I'm still having a hard time letting go and slowing down. And not slowing down on my own is probably back firing--requiring me to be compelled to slow down. I want to be able to celebrate fun days and do all the "things" because I'm just too young to not be able to control my body! How frustrating it is to feel perfectly capable mentally, yet unavoidably disabled physically.

I've been down this week, both physically and mentally. The combination of sickness--cough, cold, runny nose--and frustration has felt a bit overwhelming. I feel like my body is falling apart, and there isn't much I can do about it. My right arm has also swollen up again, and there is a combination of tingling and numbness as well as pain. I wonder if part of the pain is from my muscles aching from the overcompensation in attempting to force my fingers to fulfill the tasks my mind is straining and screaming they achieve. The stubborn and independent part of me just wants to always be trying to cross items off my to-do list, to be able to work around the house, to take care of my children, and to go about doing my "normal" daily tasks along with some of the fun things, but my body just isn't cooperating. My mind knows what my body should be able to do, but my body isn't working the way it should be. There is a definite disconnect. Other lovely side effects that are beyond my control include a constant twitching/muscle spasms in both eyes, headaches, fatigue, random hot flashes, clumsiness, and frustration. I just want to feel like my normal self again!

Thankfully, I don't have time to be down for long. Part of that is because there are 3 little boys counting on me to be as close to the normal me as I can. Life goes on, even when I'm sick, and I would much rather be a part of it than to avoid it and remain in a state of sadness, complaint, or despair. Whenever I get down, I try to think about something I can do for someone else. I muster up all my will power and get up and stop thinking about myself and get to work. My level of work is slower and less strenuous these days, but it feels great to be able to do even the small things. It also helps to look for the tender mercies and the silver linings. On the positive, I haven't been nauseous much. My steroid-induced weight gain has eased up and maybe even decreased. I was able to attend church on Easter Sunday. I've had many nights of restful sleep, and the boys are happy and healthy. I have to remind myself that this is a marathon, and I need to learn how to not try to do it all, to start off running and quickly get done. It's going to take a long time, and unfortunately, There's no way to outrun this race or to quit early. I have to keep going, even when my body doesn't want to comply.

Last week I wrote about feeling blessed with strength to endure and how there are many ways where the Lord is helping to make weak things in my life become strong. I still believe this to be true, especially since many of these newest symptoms have just shown up in the last hour of this round of chemo. {Only 2 more to go until a break-5/6 complete with the first phase of chemo.} I've been told that it's a good sign that it hasn't been an issue until now that I'm almost done, and my body is just showing a breakdown of this kind, even though the neuropathy is the one symptom that takes the longest to reverse. Since my body has had the strength to endure this long, I have faith it will be strong enough to return to full capacity once I'm a cancer survivor.

Something that kept coming to my mind this week in relation to my communication breakdown between brain and body was a phrase from Matt 26:41 which says, "the spirit indeed is willing, but the flesh is weak." Many times this week as I've struggled to open jars, grip the steering wheel, carry dishes out of the oven, button buttons, or accomplish what have been simple tasks that require the use of my hands, I've thought to myself, "Come on! This is easy. You can do this!" My mind, my soul---myself--that person could do those things a few weeks ago without a second thought. Now my body--my flesh---is holding ME back because of physical weakness. So, that phrase from Matthew has a new meaning to me.

Jesus Christ spoke the words first to his friends as they slept through His agony at Gethsemane, right after He pleaded with the Father to remove the cup from Him, that the burden of suffering for our sins, pains, afflictions, and temptations caused His soul what felt like too great of an agony. Our Savior asked his friends for their support, to stay awake with Him because of the pain and suffering His soul was required to endure, but their eyes became heavy and they slept. When Jesus returned and found them sleeping, he counseled the disciples to "watch and pray, that {they} enter not into temptation" and then made His comment about the spirit being willing but the flesh being weak.

There are so many ways to interpret this counsel--the disciples were right there with Jesus, and He asked them to watch, to look on Him and to pray. Sometimes that is all it takes to solve our weaknesses. I think the Savior was in part speaking of His acknowledgment that the disciples were mortal men and had the weakness of a body that gets physically tired and needs to sleep, even though their souls were willing to do everything to follow Him. And, perhaps, Jesus was even commenting on the weakness of His own flesh in suffering through the Atonement and sacrifice himself, even though His spirit and soul was willing indeed to do such a task.

I find it fitting as we just celebrated Easter to find comfort in Jesus Christ and in His sacrifice for each of us. The Lord, even the greatest of all mankind, still asked for release from the greatest trial any man has ever endured. He acknowledged that weakness of our physical bodies can hold us back from the things that our minds, souls, and spirits are completely willing and capable of doing. He asked for the pain and agony to be removed, all the while realizing that it had to be done, that He had to finish it. And once He finished His mission, His weak, earthly, mortal body was laid to rest, only to be taken up again, perfected.

In some small way, I am comforted in the struggle between body and mind. I know that my flesh will someday soon be stronger again, that my spirit will be strengthened through this trial and that my body will soon heal again, stronger, too. For now, I can just keep trying to look toward the Savior, watching and praying, and hoping someone will be around when I have a jar of pickles that needs opening.